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Special Educational Needs: ‘My Battle To Get An Equal Education’

August 6, 2021

The number of placements given to students with special educational needs (SEN) in London was significantly lower for those aged 16 and over compared to younger pupils, the BBC has found.

Data shows that more than 13,000 SEN placements were offered to under-16s between 2019-2021. However, only 2,508 placements were given to 16-25 year olds in the same time period.

Claude, 23, from Richmond-upon-Thames, has been out of education since 2017 after he was not granted an appropriate placement by his local education authority.

Following years of tribunals and emails to the Department for Education, he has created a petition to try to stop other young people across the UK going through what he has.

 

Rett Syndrome: My Sister And I Have Never Spoken

August 5, 2021

Siblings often enjoy an unbreakable bond having grown up together and shared the same experiences. That’s the case for author Victoria Scott and her sister Clare. Clare can’t speak, write or sign due to Rett syndrome so they have been communicating for more than four decades without words. Victoria explains.

It’s 1989 or thereabouts and I’m being bullied at school. I don’t want to talk to my parents about it because I’m ashamed, but I know Clare won’t judge me.

After lights-out, I clamber into bed with her. We lie nose-to-nose, and she listens as I unload my worries and, when I’m finished, her shallow, rhythmic breathing lulls me to sleep.

We had many nights like this during childhood. They were entirely one-sided, because Clare can’t talk.

She has Rett syndrome, a complex neurological disorder that has left her profoundly disabled. There was no sign of her condition at birth, but a faulty gene stole the skills she had developed as a toddler and she now needs round-the-clock care.

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What is Rett syndrome?

  • It is a rare genetic disorder that affects brain development and results in severe mental and physical disability.
  • It mainly affects girls and impacts about 1 in 12,000 births each year
  • It is present from conception but usually remains undetected until the child – often from the age of one – starts to regress

Source: NHS

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Diagnosed in the 1980s, Clare was one of the first children in the UK to be given that label by doctors who didn’t have much experience to go on. This meant my parents were given two vague and frightening pieces of information.

Firstly, they were told to take Clare home and “keep her happy,” inferring that she would surely die soon. That prophecy has not come to pass, thank heavens. Clare is now 41 and lives in a friendly residential care bungalow run by a charity. Our mum, Yvonne, gave up her career to care for her, but as Clare got older and her needs became more complex, even that wasn’t enough. Caring for Clare takes a village.

The other thing my parents were told was that, most likely, Clare would forever have the understanding of a baby.

I have always doubted that assumption.

Clare’s eyes are wise, warm and expressive. They light up when she listens to her favourite music – Kylie – and she is moved when she listens to The Snowman. Her eyes dance when she sees her niece and nephew and sparkle when she sees a man she fancies (including my husband, who I don’t mind sharing). They also sharpen when she’s in pain, narrow when she’s frightened and dull when she’s tired.

Then there are her hands, which Rett syndrome has characteristically made her wring daily since babyhood. They are bellwethers for her mood – frantic when she’s excited, languid when she’s relaxed, rigid when she’s uncomfortable.

Despite her inability to communicate by the spoken or written word, these involuntary movements tell us a great deal.

In recent years, the development of eye-gaze technology – where a person can build words and sentences by focusing on a computer screen – has transformed the lives of many people with Rett, giving access to an internal world once thought to be lost forever.

Families have found that their children understand more than those doctors had originally surmised, bringing about profound change for everyone concerned. One father, whose daughter has Rett syndrome, told me her first words via eye-gaze were: “I love you”.

Sadly, Clare hasn’t mastered the technology, primarily because her healthcare needs have been all-consuming in recent years. She was hospitalised with pneumonia and sepsis in 2019 and Covid-19 has meant she was forcibly withdrawn from the outside world to shield.

We’re not giving up hope, though, because hope is the engine that keeps driving us forwards.

There’s something else spurring us on. Nearly four decades after Clare’s diagnosis, we now know which gene causes Rett – MECP2 – and American scientists are expected to launch the first human trial of gene therapy to treat the condition next year.

This involves injecting a modified virus into the recipient which carries a correct version of the faulty gene.

Trials of the therapy on mice have demonstrated that a complete reversal of Rett may be possible. It’s an extraordinary prospect – absolutely dumbfounding that Clare’s condition could, potentially, be reversed in adulthood.

It feels like science fiction, even though it could soon become science fact.

I do have some significant concerns, however. I worry how Clare might feel about it, and whether she would be frightened. Furthermore, gene therapy is new and risky. What if it goes wrong?

We’ve also discussed the possibility of gene therapy as a family, but we are yet to reach any conclusions. Making a decision as enormous as this on my sister’s behalf, without being able to consult her, is a huge responsibility.

Although research points to potentially incredible gains, gene therapy also carries some significant risks, including the possibility of developing cancer, or an immune system problem, and even the risk of death. What right do we have to make this choice for her? But also, do we have the right to deny her this chance?

It was these questions that inspired me to write my first novel, Patience, which explores how a family deal with the decision to enter their daughter into an experimental gene therapy trial. I wanted to examine the ethics and emotions that surround such a decision.

The novel is told from the perspective of Patience’s mother, father, sister and, crucially, from Patience herself. She is unable to communicate, and her family are unaware that she understands.

Clare herself has had a lifetime of people making decisions about her life and her health without anyone consulting her, and I wanted to put that experience front and centre.

Back once more to those childhood nights. In those moments, when it was just the two of us, I swear I’ve experienced telepathy. Our faces cheek-to-cheek, I have felt words cascade into me, warm and wise.

You might suggest that it was wish fulfilment, that I was projecting my own words onto her, and that’s the most likely explanation. But I also believe in the power of human love to cross barriers, to influence things beyond the realms of scientific understanding.

Maybe Clare is “speaking” to me, maybe she’s not, but some evidence is irrefutable. I know from her smiles and her laughter that she knows who I am, that she remembers our bond and that she enjoys my company.

Recently, I saw Clare in person for the first time in 18 months – the longest we’ve ever been apart.

Once I’d wiped away a few tears, I held her hand and gave her a hug and we both reassured each other that we were still living and breathing.

Then I showed her a proof copy of the novel, which she knew I’d been writing – but probably, like pretty much everyone (including me) – never believed she’d see in print. We exchanged a meaningful look and a smile, and it meant the world to me.

Patience by Victoria Scott is published on 5 August

Anthony Hewson Obituary

August 5, 2021

Anthony Hewson, who has died aged 73 of heart-related problems, was a campaigner for disabled people, and especially for children, who brought much-needed change and modernisation to a wide range of charities and public bodies.

His involvement in services for disabled children began after his son, Toby, was born in 1981 with cerebral palsy.

Anthony, an engineer, began to devote his time to the school where Toby was a student, Ingfield Manor, in West Sussex, becoming chair of its governing body. He later joined the board and, in 1993, became chair of what was then called the Spastics Society, which owned Ingfield Manor.

The charity, where I worked at the time, had experienced a period of turmoil in the early 1990s, losing its chief executive and finance director. Its coffers had been hit hard by recession, jobs and services had been cut, and there was a need for real leadership and direction. At the same time, many believed it needed to become more inclusive. There was at that time limited involvement and input from disabled people in the development and running of services, or in influencing the direction of the charity.

Anthony helped develop a financial plan to avoid further cuts and closures. He brought a fresh perspective, recognising the need to involve disabled people in decision-making and in service design and development.

Education was always Anthony’s passion, rooted in his experience as a parent. He was driven and persuasive. Colleagues at the charity found his approach heartening: he did not want the status quo – he wanted things to be better. And he made a real point of listening carefully to others’ opinions and concerns. He was determined that disabled people should have better lives and that the charity – the biggest and most influential disability charity in the UK at the time – should lead the way.

He also took a central role in championing a change in the charity’s name, which most disabled people found outdated and offensive. Through a vote of the membership, in 1994 the Spastics Society became Scope.

Under his guidance, Scope developed a closer relationship with the Peto Institute in Hungary, which had pioneered conductive education, an educational technique that helps people with motor disorders, such as cerebral palsy, to improve their motor function and become more independent. The charity was the first to arrange for a group of candidates to undertake the gruelling training to become teachers, or “conductors”, in Hungary, and return to the UK to practise the technique. Before this, children wanting to benefit from conductive education had to travel to Budapest. Today the technique is much more widely available in the UK, and the teaching of it can be studied at degree level.

Born in Findern, Derby, Anthony was the son of Eric Hewson, an engineer, and his wife, Celia (nee Pritchard). After Chard school, Somerset, he began an apprenticeship with Beagle Aircraft in Shoreham, West Sussex. He met Liz Pope in the 1960s and they married in 1971. In 1970 he became an engineer for British Leyland and then, in 1976, for the Citroën/Peugeot group. In 1982 he returned to Sussex to work in the family firm.

After selling the family business in 1996 and stepping down as chair of Scope in 1997, he began to use his skills to support other organisations across the private, voluntary and public sectors. He took up public appointments, including as deputy chair of the Commission for Health Improvement, one of the forerunners of the Care Quality Commission.

In 2000 he became the first chair of the new Children and Family Court Advisory and Support Service, an amalgamation of a number of organisations responsible for the welfare of children and families involved in family court proceedings. The establishment of the new organisation was fraught with difficulties, and Anthony felt the merger should have been better planned and resourced. He left in 2003, frustrated that he had not been able to achieve what he had hoped. He then became a lecturer at the National School of Government, training senior civil servants.

He continued to work as an adviser and consultant across different sectors, from charities to care home groups. His work included three years supporting management changes at what is now St George’s University hospital NHS foundation trust, one of the largest NHS trusts in the UK.

Anthony returned for a second stint as chair of the board of governors at Ingfield Manor school and chaired the board of Connect, a charity that supports disabled people with communication difficulties. He was chair of the Hornsey Centre for children with cerebral palsy and a trustee at the National Council of Voluntary Organisations (NCVO). In 1998 he was appointed OBE for services to disabled people. The Peto Institute made him an honorary conductor in 2001.

In 2009 Anthony came full circle to the things that mattered to him most, working with Toby to set up a charity called Just Different. The charity goes into schools and runs workshops by disabled people, including Toby, to raise awareness and understanding among children and young people of disability and difference. To date Just Different has worked with more than 200,000 children and young people, and has expanded its work to provide visits to businesses.

In the weeks before his death he was discussing with friends the potential for launching a campaign to improve educational provision for disabled children. He was deeply concerned that services and conditions for children and their families were becoming worse now than they had been when Toby was young.

Anthony is survived by Liz, Toby, his sister, Elizabeth, and his mother.

Mikey Poulli: The Young Blind Footballer Backed By Star Players

August 4, 2021

An 11-year-old boy from north London, who lost his sight due to a rare degenerative condition, is able to play the sport he loves thanks to a football that makes a sound.

Mikey Poulli was devastated when he could no longer play after losing his sight to rod-cone dystrophy.

BBC London first spoke to Mikey in April 2019 when, at just eight years old, he had been scouted by the FA.

Now Mikey has met and trained with a host of football stars and hopes to one day play for the England blind team.

Disability: Paralysed Woman To Swim English Channel

August 3, 2021

A former police officer who was paralysed in a bike crash 20 years ago is aiming to swim the English Channel.

Paula Craig, from Pembrokeshire, is hoping to become the first person with a complete spinal cord injury to swim the Channel without a wetsuit.

Ms Craig, 58, will swim the Channel as part of a relay team of six, who will take turns to swim for an hour each.

“If you’re going to do a challenge then you may as well make it tough,” she said.

At the time of her accident in 2001, when she was hit by a car while on her bike, Ms Craig was working for the Metropolitan Police in London, as well as being a sub-three hour marathon runner and triathlete.

She said: “I woke up on the roadside and I’ve always said that that was a huge thing really, because I think I began to deal with it from that moment.”

She continued to work for the police, rising to the rank of detective inspector, as well as competing as a wheelchair athlete internationally.

To train for her latest challenge which is set to take place on 16 August, Ms Craig, who now lives in London, has been swimming off the coast of Fishguard, Pembrokeshire.

Her regime has involved swimming for 90 minutes, before a break and another hour’s swimming, all in water under 16C.

She said: “I’m hoping that the preparation is tougher than the actual swim, because the preparation has been tough.”

Each of the team of six will swim for an hour each at a time.

She added: “Obviously you’re there on the boat for five hours, potentially being sick, potentially feeling really bad, with the possibility of being woken up in the middle of the night to be told you’re in next.

“So it is going to be really, really tough, but if you’re going to do a challenge then you may as well make it tough, I guess.

“Open water swimming is just fantastic. It’s fantastic for everybody, but I think as a wheelchair user… to be completely out in the water with nothing around you is just this amazing feeling as well.”

Her sister Sue Evans said Ms Craig was “very resilient and determined”.

She said: “She never gives up on anything at all. Anything she does, she’s got to do really well at. I wouldn’t get in the sea at this time of year anyway, but for her to swim the Channel is pretty amazing.”

Blind Ambition Review – A Candid, Charming Take On Sight And Artistry

August 2, 2021

Blind Ambition (BBC Two) takes the tried and trusted format of putting two grumpy men together and sending them off on an exploratory adventure. The twist here is that Jamie O’Leary, a TV director, is partially sighted, and Jamie MacDonald, a standup comedian, is blind. O’Leary, who directed the series I’m Spazticus, explains that his passion projects cast disabilities in a different light. The idea here is to meet blind or partially sighted creatives, to see how their vision changes, well, their vision.

Blind Ambition is part travelogue, part documentary, part art project, and it is a bit of a shambles, at times, but a charming one. O’Leary has myopia, and at the beginning the producers send him off to an appointment at the eye doctor: “I always get a ‘wow’.” On cue, his optician greets him with one, before asking MacDonald what he would say to O’Leary, if he were to lose his sight completely. Should he prepare himself for it, or act as if it will never happen? O’Leary says, frankly, that he is in denial and can’t even let himself go there.Advertisementhttps://754b4e97e32ac375fac9184868eeb2be.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

The candour of this documentary feels important. In Southend, after the first of many slightly tetchy car journeys together, the two Jamies meet Ian, a professional photographer who is 95% blind and has tunnel vision. In the car, MacDonald tries to work out how much he can, essentially, take the piss out of Ian; O’Leary tells him to go easy. But after Ian talks about his earlier depression and thoughts of suicide, he is the one who impresses the need for jokes. “You’ve got to have a sense of humour to get through blindness,” he says, before photographing the presenters in front of shops called Blind Corner and I Heart Blinds.

There is a series of stunts contained within this hour-long programme, each more absurd than the last. The Jamies try to take their own photographs in Southend, to varying degrees of success. They dress up as mice for more pictures (it took me a second to realise that the concept was “two blind mice”). Both appear entirely unimpressed at what the producer is asking them to do, even more so when they realise that doing the shoot at a train station on a Saturday night might attract a bit more attention than planned. “Is this a weird porno?” heckles one passerby.

Next, they go to Reading to meet a rapper, Stoner, who lost his sight five years after contracting meningitis at the age of 11. It is the most enjoyable section by far, in part because O’Leary attempting to impress Stoner with his hip-hop knowledge and questions about weed is very funny indeed. Denial rears its head again, as Stoner talks about his refusal to have a white stick or a guide dog, although he does say that, if he could train up an American bulldog, he might consider it. The Jamies then put themselves through the excruciating ordeal of a rap battle. To the enormous credit of Stoner, he gamely nods along.

In Derby, the pair meet Chris, a blind woodturner. Inspired by Chris’s confidence, the Jamies give it a go on the lathe, until Chris has to interject: “Right, careful!” In London, they meet Lizzie, a soprano who has no peripheral vision, but after they dress up as cartoonish opera singers and try to sing on stage, O’Leary has had enough of the stunts. Instead, he decides to put together and direct a rap-opera-western, with Lizzie and Stoner, and a cameo from MacDonald. It starts to go off on a tangent here. There is an art show, which features Chris’s woodwork, Ian’s photography and paintings and collages by various artists with limited or no vision. Then Apple from the Black Eyed Peas does a cameo on a new track by Stoner. I wondered if this was conceived of as a series, rather than the one-off it has ended up being. It certainly packs a lot in.

As a travelogue, though, it is very funny, and I thoroughly enjoyed O’Leary and MacDonald’s bickering. For all of its ramshackle, self-deprecating humour, it offers an illuminating take on blindness and creativity, as well as a candid look at the psychological effects of being visually impaired. O’Leary cites a New York Times piece from 2017, which reported that most Americans regard a loss of sight as the worst thing that could possibly happen to them. Again and again, they meet creative people who are dealing with that “worst thing” and making music and art regardless.

What to do if you are being discriminated for disability at work

July 30, 2021

 

Neha Thethi, employment law expert at leading law firm Lime Solicitors explains what work-place discrimination is and what to do if you’ve experienced it.

It might sound strange, coming from a lawyer, but my key advice would always be to try and resolve any problems with your employer informally in the first instance.  Wherever possible, employment tribunals should be a last resort; they can be highly stressful and often avoided through informal and/or formal grievance procedures.

What is discrimination at work?

The Equality Act 2010 protects you from discrimination. It is unlawful for employers to discriminate against employees because of one of the nine protected characteristics, which include : age, gender reassignment, marriage or civil partnership, pregnancy and maternity, race, religion or belief, sex, sexual orientation, and disability. All workers (irrespective of their employment status) and job applicants are protected against discrimination during the course of their employment.

There are different types of discrimination such as direct (including by association and by perception); indirect; harassment and victimisation. If you are a disabled person, your employer must not treat you unfavourably because of something connected to your disability where they cannot demonstrate what they are doing is objectively justified. This is called discrimination arising from disability. However, this will only apply if your employer knows or could reasonably have been expected to know that you are a disabled person.

Even though you are not obliged to tell your employer that you are disabled, it is highly advisable that you do, otherwise an employer may have a defence against a claim of discrimination if they were genuinely unaware of your disability. For example, your employer cannot make reasonable adjustments if they do not have constructive knowledge of your disability. If you want your employer to make reasonable adjustments at work then you must inform them of your disability in order to ensure that they know they have a legal duty to put the adjustments in place. Where possible, ask your employer for a referral to occupational health in order to support you at work.

What are reasonable adjustments?

The Equality Act says there’s a duty to make reasonable adjustments if you’re placed at a substantial disadvantage because of your disability compared with non-disabled people or people who don’t share your disability. There are lots of reasonable adjustments that employers can make, but adjustments only have to be made if it’s reasonable to do so. What’s a reasonable thing depends on your disability; how practicable the changes are; the size of the organisation, how much money and resources are available and the cost of making the changes. Examples of reasonable adjustments include providing flexible working hours; modifying work performance targets; providing special equipment or extra assistance to help you in work; providing ramps for wheelchair access; providing designated car parking spaces etc.

In addition to this, employers can help prevent discrimination in the workplace in other ways, including: having an up-to-date equality policy; providing regular anti-discrimination training to staff; making it clear how staff can complain if discrimination happens; regular one to one catch ups between employees and their line managers to help build positive working relationships.

What do I do if I’m being discriminated at work?

No one should ever be discriminated against at work. It is your employer’s responsibility to manage the behaviour of their staff. If a manager, peer or colleague is treating your unfairly, you should try to sort the problem informally first, with the person directly, or if you are not comfortable with this then through your manager, HR department or trade union representative.

What do I do if my employer won’t make adjustments or I’m still being discriminated?

When you are still working with an employer it is good practice to try and resolve any problems with your employer informally in the first instance. You could arrange a meeting with your employer, inform them of the problems you are experiencing and ask them to take appropriate action to resolve these problems, for example, by making a reasonable adjustment as recommended by occupational health. It is often the case that an informal discussion is all that is needed to get matters resolved.

If, however, this does not help your situation then you should raise a formal complaint through your company’s grievance procedure. Raising a grievance usually involves writing a letter with details of the discrimination. Your employer’s policy should explain what you need to do. It will also tell you how long each stage of the procedure should take. If you are unfairly treated for raising a grievance, this is also discrimination.

If raising a grievance does not help, then you may want to negotiate an exit package, or settlement compensation for the discrimination you have received.

If matters still remain unresolved, then you may wish to speak to a solicitor about taking legal action and making a claim for disability discrimination.  

Communication

Communication is key. Your employer can not help you if you do not explain your situation.

Being discriminated against, for any reason, can be highly stressful and unsettling. However, it is important to keep notes of any conversations and copies of any emails so you can show that you tried to follow your employers procedures and find a solution.  – if you find that you cannot settle the issue through informal/formal procedures or mediation, then it’s crucial you have a trusted legal advisor fighting your corner, to get the adjustments, apology, recognition and compensation you deserve..

Covid: Deaf Woman Wins Claim Over Lack Of Sign Language At Briefings

July 29, 2021

A deaf woman has won a claim against the government after a judge found a lack of sign language at two Covid briefings “served to disempower, to frustrate and to marginalise”.

Katie Rowley, 36, from Leeds, started court action after the sessions went ahead without interpreters on screen.

The government denied breaching its legal obligation to make broadcasts accessible to deaf people.

In his ruling, a judge said the lack of provision constituted discrimination.

Katie Rowley, 36, from Leeds, launched the court action against Cabinet Office Minister Michael Gove in relation to the “data briefings” on 21 September and 12 October 2020.

She had argued that being unable to access the official information had caused her stress and affected her wellbeing.

Finding in her favour, Mr Justice Fordham said: “The lack of provision – the provision of subtitles only – was a failure of inclusion, suggestive of not being thought about, which served to disempower, to frustrate and to marginalise.”

Though he agreed with Ms Rowley’s claim in respect of both, the judge said subsequent briefings were not in breach of equality legislation.

The level of damages awarded to the claimant would be assessed by a county court judge, he added.

After the ruling, Ms Rowley thanked the judge and her legal team and said she was “very happy with the outcome”.

She said she was “emotional that we have achieved what we needed to be equal but sad at the same time that we had to fight for our rights”.

Similar briefings in Wales, Scotland and Northern Ireland included British Sign Language interpreters on screen.

A Cabinet Office spokesman said after the ruling: “We are pleased that the court ruled our policy of using on-screen British Sign Language interpreters was lawful during the pandemic.

“Our priority has always been to reach the largest possible audience with important public information, and we will continue to ensure that British sign language interpretation is made available during Covid-19 briefings.”

Officials said there had been more than 170 Covid briefings and “only two” had been found to be unlawful because British sign language was not provided on screen.

Ms Rowley, who was 25 weeks’ pregnant when she launched the judicial review claim, previously said the stress caused by being unable to access information at the briefing impacted upon her wellbeing.

Many who use BSL as their first language say they cannot rely on subtitles because the average reading age for deaf people is nine years.

“I have dyslexia myself – I am a slow reader – so that means when I was reading the subtitles, I would miss so much information and [it] would just mess up my head. It would be so difficult – it became impossible,” Ms Rowley previously told the BBC through an interpreter.

I Struggled With Office Life. Now Others Are Alive To Benefits Of Remote Working

July 28, 2021

I struggle with a mild form of face blindness, or prosopagnosia. The condition, usually associated with autism, makes it difficult to remember people’s faces. This means that, in high-stress situations, I am often unable to match someone’s face to their name or even remember if I’ve met them before. When I worked at an office, I inadvertently offended colleagues who did not understand why I struggled to place who they were.

This is just one way that the daily office environment made my career difficult to navigate. Working from home, as I have for the past three years, has made a positive difference in my ability to be a successful, confident journalist, and a happier person overall.

For years, people with invisible disabilities – including neurodevelopmental disorders like autism and attention deficit hyperactivity disorder (ADHD) – have campaigned for accommodations that would allow us to do our jobs well. Chief among these is the flexibility to work from home. For many of us, the remote work era facilitated by Covid-19 has changed our lives for the better, despite the grief and anxiety of the pandemic.

Now, as the world begins to reopen and offices throw open their doors, many are afraid the era of working from home – where they feel more comfortable, productive and safe – is coming to an end.

A culture of workplace inflexibility

“In our research, what we found was that working from home was amongst the most required accommodations or support that people with all types of disabilities reported needing,” says Arif Jetha, part of a team of researchers who study workplace accessibility issues at the University of Toronto’s Institute for Work and Health. This essential accommodation request “was also one of the most unmet needs” by employers, Jetha says.

“Employers would often say that this is not in our policy. We just don’t do that.”

Paula*, a social worker in Liverpool, England (who requested that the Guardian change her name to protect her privacy), is autistic. In an office, she struggles with processing information and concentrating. Though she is easily able to complete her job’s administrative tasks without going into an office, before the pandemic, her direct manager required her to put in a new request every time she wanted to work from home. Eventually, she says, she gave up.

When the whole company transitioned to remote work during the pandemic, it threw into sharp relief the absurdity of having to make frequent requests to work from home – requests that were often denied.

“It is frustrating to hear [co-workers] complain about their needs not being met because they’re now working from home,” Paula says. “I really have to bite my tongue to stop from asking them, ‘Yeah, how’s that feel?’”

Becca*, a journalist in London who requested that only her first name be used because she hasn’t gone public with her autism and ADHD diagnoses, says she has “absolutely” faced hurdles climbing the career ladder because of her disabilities.

“I personally really struggle with processing different sounds at the same time. I always found it really difficult to work in an office with music playing and then listening to someone talk,” Becca says. “Brainstorming in a team of extroverts was also awful. I don’t like shouting over people and process written language so much better [than spoken conversation].”Advertisement

As a result, Becca says that employers and co-workers would assume she didn’t have any of her own ideas. This, and her discomfort with social situations and networking activities, made it difficult for her to get recognition for her work and the value she brought to her teams.

Becca has worked from home for years now, which she prefers to working in the office. “So much flexibility, lots of movement, many, many showers per day! A fan on me at all times,” she says. “Office spaces feel geared towards mentally well people and neurotypical people.” At home, she can orient her work situation, more or less, how she wants it.

Opportunity for reassessment

A 2020 analysis of job market data shows that, although people with physical or mental impairments can benefit greatly from workplaces with flexible remote work policies, we’re more likely to be denied such jobs, and instead find employment in precarious, inflexible service work and other blue-collar jobs. But even in white-collar office positions, the disability disclosures that many employers require for even the most basic accommodations can present roadblocks.

“Providing documentation [of diagnoses] can be extremely difficult, traumatic and personal for people,” says Jalyn Radziminski, the communication manager for the Bazelon Center for Mental Health Law. “Everyone does not have the same access to healthcare, funds and insurance to afford to be able to see someone consistently to provide paperwork.”

That’s not all. “People who disclose mental illness or other invisible disabilities such as autism often experience stigma after disclosure,” says Simon Bury, a postdoctoral research fellow at the Olga Tennison Autism Research Center at LaTrobe University in Melbourne, Australia. “This has led to reports of being overlooked for promotions, being discriminated against in task allocation that could lead to promotion, or simply being fired.”

With the requirement of disclosure, many of us are stuck between a rock and a hard place: disclose, and face significant stigma for our diagnosis. Refrain from disclosure, and struggle to explain why we have trouble with situations that other workers navigate with ease.

But there’s a way forward. Jetha, the Institute of Work and Health researcher, says that by implementing universal accessibility principles, like remote work options for all employees, employers help eliminate the need for individuals to disclose private diagnoses.

Remote work options benefit everyone. Parents can easily stay home with sick kids. Someone who’s feeling down for personal reasons can take the space they need without missing work. A commuter who lives far from the office can stay home when traffic is bad, or simply when they don’t have the energy for a long commute.Advertisement

Even as pandemic restrictions recede, there’s reason to hope that employers will allow their workers the flexibility they want or require.

“Many workers who might have previously been denied remote work alternatives, part- or full-time in the past, may now have a renewed opportunity to negotiate flex-place and flex-time working alternatives that make them far more productive, and lower stress and anxiety,” says Susanne Marie Bruyere, the director of the Yang-Tan Institute on Employment and Disability at Cornell University.

“This is hopefully one positive outcome from the pandemic – that organizations realize that there are many ways to work, and among them is working from home [or] remotely.”

Most critically, a flexible workplace allows people to take care of their needs as they arise, without judgment.

The pandemic made clear that for people who work in an office setting, most of our jobs can be done just fine from home. Companies that want to support all employees, not just those who fit a narrow mold, may realize that remote work policies have the capacity to make a happier, more productive workforce.

Just A Third Of Deaf Students Achieve Two A-Levels Compared To More Than Half Of Hearing Students

July 27, 2021

A press release:

 

 

  • Just 34% of deaf students achieve two A-levels or equivalent.
  • Gap in results between deaf and hearing students increases.
  • The National Deaf Children’s Society calls on the Government to act swiftly and “end the injustice ingrained in the education system.”

Just a third of deaf students received two A-levels or equivalent last year compared to more than half of hearing students, the National Deaf Children’s Society has revealed.

New analysis of 2020’s exam results reveals that just 34% of deaf students across England gained two A-levels or equivalent vocational qualifications, compared to 55% of hearing students.

The National Deaf Children’s Society says that deafness is not a learning disability and the gulf between deaf and hearing students is “an injustice now ingrained in the educational system.”

As a result, the charity is calling on the Government to urgently address the issue in the upcoming SEND review by investing in more support for deaf students throughout their education, pointing to the difference in results as clear evidence that what’s currently being provided falls woefully short.

The exam data, which includes all students aged 18 across England, also shows that the number of deaf students reaching two A-levels or equivalent fell for the first time in four years, dropping by 2%. Meanwhile, hearing students saw their first increase in seven years with a 1% rise, widening the gap between the two groups.

The National Deaf Children’s Society says this is a huge concern and pointed to inaccessible remote learning as a possible cause, with its own research showing that two thirds of deaf students (63%) found lessons difficult to understand during lockdown.

Given they have all spent even more time learning from home this academic year, there are fears that the gap between deaf and hearing students could widen even further in 2021.

Consequently, the charity says that from September schools and colleges need to make sure deaf students aren’t disadvantaged by face coverings, which restrict lip-reading, and prioritise them for any catch-up support being offered.

Martin McLean, Post-16 Lead at the National Deaf Children’s Society, said:

“Despite year after year of evidence, major advances in technology and constant Government promises of a superb education, the fact remains that two thirds of deaf students still fall short of what they set out to achieve. There’s a gulf in results between deaf and hearing students and it’s an injustice now ingrained in the education system.

“The Government has the opportunity to create real change in the upcoming SEND review and close this gap, but only if it gives every deaf student the tailored support they need and the education they’ve been promised.

“Deafness isn’t a learning disability and there’s no reason why deaf students can’t achieve the same results as their hearing classmates. No one involved in their education should rest until they do.”

‘You’d Walk Out If Your Husband Hit You – You Can’t When It’s Your Child’

July 26, 2021

Most parents never have to worry about being attacked by a violent child, but if it happens, they face a dilemma. They can’t just walk out – and they may fear that seeking help will have repercussions for their child. Research suggests the problem is often hidden, and far more common than we imagine.

Last summer, 10-year-old Aidan decided he was going to kill the family dog. He lured her behind the sofa with a sausage before putting his hands over her muzzle and around her neck.

“The crazy thing is that he actually loves the dog and me the most out of anyone,” says Aidan’s mother, Hazel. “But we are the two that he will target and sometimes he will hurt her to get a reaction out of me.”

Aidan kicks and hits, and he used to bite. He tells Hazel that he hates her and wants her to die, that he’s going to get a gun and shoot her. He’s tried to push her down the stairs, and now that he’s worked out where her blind spots are – she has a visual impairment – he throws things at her that she can’t see coming. Recently it was a kettle, which fortunately hadn’t just been boiled – but Aidan didn’t know it was cold when he picked it up and launched it.

“It looks like abusive, bullying behaviour,” Hazel says. “I feel like I’m in a domestic violence relationship. You say the first time your husband hits you you’ll walk out the door, but you’re not going to do that with your child are you? Because you’re the child’s protector, as well as his victim.”

All of the knives in the house have been locked out of reach since Aidan armed himself from the cutlery drawer and went for another member of the family. But he’ll use anything sharp – scissors, even nail clippers.

“Everything leads to violence,” Hazel says. “He is drawn to violence and will see the violence in any situation. We can’t even watch simple children’s programmes because if there’s the slightest bit of violence he will re-enact it, re-enact it, re-enact it.”

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Aidan was four when Hazel and her husband adopted him and it was immediately clear he had much more complex needs than they’d been led to believe.

“We knew from day one there were serious problems,” Hazel says. “But we thought, ‘Well, he’s in a very strange environment, his foster placement wasn’t healthy… Let’s see how it goes.'”

But things didn’t go well. Right from the off, Aidan punched, pulled hair and spat.

Hazel and her husband hoped that the violence might abate over time, but it only got worse. Twice by the age of five Aidan had hospitalised the teaching assistant at the specialist unit where he went to school – the first time by kicking her full in the face as she bent down to pick up something he’d thrown on the floor in a rage. I know how violent he was – I saw the bruises all over the teaching assistantsHazel
Aidan’s mum

School staff were given specialist training to learn how to hold Aidan safely when he was being violent. She remembers the first occasion she saw Aidan after an “extended hold” – up to 50 minutes long.

“He was sitting on a little sofa in his classroom stripped down to his vest because he was sweating, with a teaching assistant beside him, and he was just shaking and quivering – it was awful,” she says. “I sat down and he just curled up on my knee, foetal style. It was really distressing.”

Looking back, Hazel wonders whether she should have allowed the school staff to restrain Aidan like this, although how else they could have contained him she’s not really sure.

“It must have traumatised him, but I know how violent he was,” she says. “I saw the bruises all over the teaching assistants and I don’t know what else they could do to keep themselves safe.”

The school then built a padded room, a soft, safe space for Aidan to go when he was a danger to himself and others.

“But he was in there every day,” Hazel says, “and he’d be so angry that he smashed the reinforced glass on the door three times.”

It was at that point the school told Hazel that they couldn’t manage her son any longer.

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In 2010, researchers at the University of Oxford carried out the first ever analysis of police data on child-to-parent violence, finding 1,900 offences recorded in London over a 12 month period.

Criminology professor Rachel Condry, who led the project, estimates that nationwide there are tens of thousands of cases each year, most of which go unrecorded.

“It’s such a hidden problem – there are just so many parents that don’t feel like they can report it to the police or don’t get any help or don’t find services,” she says.

Parents have often told her they experience years of violence before reporting their children, and only make the call when they are really in fear.

“They’re quite rightly really worried about criminalising the child and what the consequences might be,” she says.

Before Condry’s study there had been very little research on child-to-parent violence, and in fact little awareness that it existed.

“It wasn’t on any official website, in any government policy – there was no mention of it anywhere,” she says. “And yet when I spoke to people who worked with children and families, in all sorts of different areas, they talked about coming across these cases all the time, so it was this really interesting silence.”

Families may not even tell their friends what is going on.

“There’s terrible shame in this,” says Helen Bonnick, a former social worker who has written a book about child-to-parent violence.

“If you’re a parent, your role is to bring up your child to be a responsible member of society and a loving, caring, human being, and if that’s all gone wrong, people feel that they’ve failed. They really don’t want to talk about it. And because no-one talks about it you think perhaps you’re the only person that’s experiencing it.”

Like domestic abuse and intimate partner violence, child-to-parent violence affects people from all walks of life, rich and poor, and it would be wrong to assume that it only occurs when children have been in care. In fact, Michelle John, from child-to-parent violence charity Parental Education Growth Support says her organisation helps more birth families than adoptive ones.

As is the case in Hazel’s family, mothers are most likely to be the targets.

“Women are much more likely to be victims of domestic violence of all kinds, and that is the case here too,” Rachel Condry says. “Although it does happen to fathers, son-to-mother violence is the most common form.”

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Now no local school will have Aidan – all of the specialist units have turned him down or thrown him out. The nearest one that will is half an hour’s drive away, and it’s also unable to meet his complex needs.

“They’re containing him, but nothing’s getting resolved,” Hazel says. “The kid is still struggling.”

Academically he’s already about three or four years behind other children of his age, although his handwriting is beautiful.

Hazel has paid for training sessions to learn techniques that she can use to de-escalate Aidan’s violent behaviour, to avoid getting harmed.

One tactic is to hold up a large sofa cushion to prevent Aidan being able to hurt her.

“The first time he grabbed it off me and hit me with it,” Hazel says, “So I thought, ‘OK, got to hold it tighter.’ The second time it worked quite well – I managed to get it between us and he was punching and kicking and trying to get around it, but not managing.”

Hazel stresses that her son isn’t evil, he is the way he is because of trauma that happened in his past – and that’s not his fault.

“Even though it feels like he’s an abuser, he’s not really – he can’t help it,” she says. “He’s actually such a sweet-natured boy – he’s adorable and funny, and we do love each other.”

But the strain of all this has forced her to give up her job. Her health has gone through the floor – she’s had shingles repeatedly and pneumonia more than once in the past year, and now takes antidepressants. Her relationship with her husband has also suffered.

“When we first realised there were issues and things were so difficult, we basically both felt we’d made a mistake and couldn’t cope,” she says. “But saying that out loud means you have to do something, so neither of us said it out loud. We basically didn’t speak to each other for about six months.”

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When is there a problem?

The Who’s in Charge? programme says that when a child’s behaviour becomes controlling, threatening, intimidating or unsafe it stops being normal. It provides signs to look out for:

  • You change your behaviour to avoid confrontation with your child
  • You are fearful for your safety or the safety of other family members
  • The child is stealing or damaging other family members’ possessions
  • The child threatens you or others
  • The child threatens to harm themselves or engage in risky behaviour – always take threats of self-harm seriously
  • The child is cruel to pets

Click here for a longer list

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A couple of years ago, after much soul searching, Hazel was on the brink of taking drastic action.

“I found the effect it was having on the family as a whole very distressing, and so I made the decision that I was going to take Aidan and go,” she says.

Hazel’s husband persuaded her not to, and although she now acknowledges that was probably the right decision it doesn’t assuage the guilt she feels about the other children in their family.

“It’s their childhoods that we’ve put at risk,” she says.

Hazel’s family had given up visiting other people’s houses long before the pandemic. They don’t hold or go to any big family occasions; Hazel only sees her own parents while Aidan is at school because they can’t cope being around him. And Hazel doesn’t meet her own friends with Aidan in tow if any other children will also be there. She and her husband never get a night out or a weekend away – there’s no-one they can leave Aidan with who’d be able to manage him.

“It is incredibly isolating,” Hazel says.

But she has found great comfort in an online community of parents like her, in forums where people share stories and coping mechanisms, and offer moral support. Discovering so many people in a similar situation was a real eye-opener.

“There are many, many, many families like this,” she says.

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Where to get help

If you or someone you know is in immediate danger always call 999 and ask for the police. Other sources of support include:

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Hazel keeps spreadsheets and is constantly chasing the different agencies involved with Aidan to find out what decisions have been made – or not made. She is always trying to keep the momentum going to find him the help he needs.

“Child-to-parent violence is nobody’s business but everybody’s business, in the sense that it’s no single service or organisation’s primary responsibility – I think that’s a real problem,” says Rachel Condry.

The family’s big hope is to get Aidan into a residential school that aims to completely rehabilitate children like him within three years, allowing them to move back home, live with their families and attend normal day schools.

“I really want him in a therapeutic school, one that is actually going to help him,” Hazel says.

But the entrance criteria are strict and complicated so it’s a long shot.

If Aidan isn’t accepted Hazel worries about how things might turn out for him. “He’s going to be an abusive partner and he’s going to be in trouble with the police,” she says. “He will lose it and get in a fight – I see prison.”

For now, she continues trying to keep a lid on things. While Aidan is at school she walks the dog and does a bit of mindfulness to prepare herself for his return. He might decide to tear the place apart, throw the contents of the fruit bowl at her and jump off the bannisters. Or, if it’s a peaceful night, Aidan will listen to his audio books – the same stories, over and over, following the words on the page. And when it is time for bed the doors downstairs will be locked so that if he gets up in the night he can’t bother the dog.

This story uses false names to protect Aidan’s privacy

Hollyoaks Star Tylan Grant Opens Up Over “Emotional” Storyline For Brooke Hathaway

July 26, 2021

Hollyoaks star Tylan Grant has opened up about Brooke Hathaway‘s latest storyline, which has seen the teenager come to terms with their gender identity.

In yesterday’s (July 22) first-look episode of the Channel 4 soap, viewers saw Brooke struggle with the announcement that they had been voted prom queen of Hollyoaks High, before explaining why to their friends.

“I don’t think I identify as a boy or a girl,” Brooke told Juliet Nightingale and Imran Maalik, who were only too happy to support them no matter what.

The sensitive but ultimately uplifting plot has meant a lot to Tylan, who also identifies as non-binary. Speaking about their connection to the ‘Oaks storyline, Tylan told followers on Instagram that they hope it encourages any viewers in a similar situation.

“This storyline in particular means a lot to me, being non binary myself, seeing the progression of Brooke’s self growth and self discovery has been emotional and empowering for me,” they wrote alongside a series of behind-the-scenes pics.

“I hope anyone out there who is coming to terms (or confused) with their identity can feel heard, encouraged or that I can be the representation that I so needed when I was younger,” Tylan added, before thanking fans “for the love”.

Hollyoaks airs weeknights at 6.30pm on Channel 4, with first-look screenings at 7pm on E4.

Belfast GP Surgery Pays Out Over Sign Language Interpreter Failure

July 23, 2021

The daughter of a deaf woman has been paid more than £4,000 by a Belfast GP surgery over a failure to offer a sign language interpreter in appointments.

Ida Curlett, who died in 2019, relied on her daughter Carole to interpret for her during appointments at the Parkside Surgery.

Ms Curlett and her mother were unaware they were entitled to an interpreter until told by a taxi driver in 2018.

The surgery made the £4,250 payment without admission of liability.

The disability discrimination case was brought by Carole Curlett on behalf of her mother with support from the Equality Commission.

‘It was a strain on both of us’

Ida Curlett, who was a British Sign Language user, was never offered a sign language interpreter at any of her many GP appointments despite being a patient for more than 30 years, the commission said.

Carole Curlett said her mother found the lack of privacy “difficult”.

“It was a strain on both of us,” she added.

“I’m glad it is settled now, but I can’t help feeling aggrieved that we went through all those years not even knowing she was entitled to an interpreter.”

Anne McKernan, director of legal services for the Equality Commission, said it was “disappointing” the commission was still dealing with the failure to provide access to everyday services.

“Not having a professional interpreter in place in a medical setting could give rise to problems not just for the patient, but also the practice – problems such as misdiagnosis, misunderstanding of how to follow a treatment plan or inadequate informed consent,” she said.

Ms McKernan said it had put an “unfair burden on the unofficial interpreter”.

The Parkside Surgery has agreed to use the services of sign language interpreters in future when dealing with deaf patients and to advertise this facility clearly within the surgery.

Green Paper Proposes Severe Disability Group – No Assessments Or Detailed Application Forms

July 22, 2021

With many thanks to Benefits And Work.

 

The long awaited health and disability green paper Shaping Future Support was finally released yesterday. The 99 page document contains surprisingly few concrete proposals and comes close to admitting PIP was rushed and badly designed. It does, however, suggest creating a Severe Disability Group who would “never need to complete a detailed application form or go through an assessment”.

Amongst the issues Shaping Future Support does look at, those most relevant to Benefits and Work readers include:

  • Ruling out a single assessment system
  • Increasing the number of paper-based decisions
  • Continuing the use of telephone and video assessments
  • Testing a Severe Disability Group
  • Increasing holistic decision making
  • Changing the Special Rules for Terminal Illness

Ruling out a single assessment system
A single assessment for PIP and the WCA has now been ruled out. The DWP say that both initial claims and reviews for benefits take place at different times:

“only 4% of initial WCA and PIP assessments took place within 3 months of a claim for the other benefit”

“only 1% of PIP Award Reviews and ESA WCA reassessments occurred within 3 months of each other”

The DWP also say that the PIP assessment and WCA are looking at different things, so combining them would lead to a longer and more complex assessment.

However, the department is still working towards introducing an integrated health assessment service which will bring the assessments for PIP and UC/ESA onto a single, digital system. This will mean that, for example, medical evidence collected for one assessment can be used for the other.

Increasing the number of paper-based decisions
The DWP want to make more paper-based decisions. They say:

“To make more decisions quickly and simply, and reduce the need for face-to-face assessments, we want to maximise the use of paper-based assessments and make greater use of triaging. We would like to explore whether we can make decisions in straightforward cases without the need for an assessment. . .”

Where only a small amount of additional information is needed, assessors may be able to simply make a telephone call to a claimant instead of carrying out a full assessment.

Continuing the use of telephone and video assessments
The DWP claim that “In a recent survey, the majority of people who had a telephone assessment for PIP or for their WCA were ‘satisfied’ or ‘very satisfied’”

They now wish to fully evaluate telephone assessments to decide what role they will have in the future.

The department also claims that in the same survey, 56% of people said they would feel ‘comfortable’ or ‘very comfortable’ having their WCA or PIP assessment by video call.

Over 750 people have gone through a video assessment as part of a test which ran until the end of March 2021. The DWP now plans to increase the number of video assessments as part of a pilot.

Testing a Severe Disability Group
The DWP have decided not to introduce a minimum award duration for PIP. Instead, the number of repeat assessments may be cut by the introduction of a ‘Severe Disability Group’ (SDG).

The DWP say: “People who do not come within the special rules for terminal illness may still have severe and lifelong conditions that will not improve. These people are unlikely ever to work again and will always need extra financial support to live independently.”

The intention is to place people in this position into the SDG so that they “can benefit from a simplified process without ever needing to complete a detailed application form or go through an assessment.”

The DWP say they are “working with a group of health and social care professionals to help us develop the criteria for the SDG and identify the evidence that would be required to meet them. We will consult with charities and disabled people’s organisations on the criteria.”

Increasing holistic decision making
The DWP say they introduced ‘holistic’ decision making at the PIP mandatory reconsideration stage in 2019. Since doing so the percentage of decision changed at MR stage has nearly doubled and there has been a decrease in the percentage of appeals lodged.

Holistic decision making has since been introduced at MR for ESA and UC and the DWP are now also using it to make the first decision about entitlement following a health assessment on ESA, PIP and UC.

Essentially holistic decision making simply seems to mean staff spending more time making decisions, collecting more evidence and speaking directly to the claimant.

Changing the Special Rules for Terminal Illness
The period in which a person can claim under the Special Rules for Terminal Illness is to be extended from within six months of their expected death to 12 months.

However, legislation will be needed to introduce this change and so far no date has been given for the new laws to be put in place.

PIP was rushed and badly designed
The DWP have come as close as they are ever likely to come to admitting that PIP was rushed and badly designed. Looking at the frequent successful legal challenges to PIP, the Green paper says:

“While it is normal for the courts to test new legislation, the extent of challenge and the success rate suggest that some aspects of the PIP assessment criteria would have benefitted from further testing before PIP was introduced.”

When PIP was brought in, the stated intention was that it would cut the benefits bill by 20% compared to DLA. In fact, it is costing between £1-2bn more than DLA would have cost.

The DWP say that “Implementing the required changes following successful legal cases is one of many reasons why the cost of PIP has increased.”

Have your say
You can download a copy of Shaping Future Support from this link You can also download a response form from the same page if you wish to take part in the consultation.

Alternatively, you can complete an online consultation form.

The closing date is 11 October, with a White Paper due to be published in mid 2022.

Colour Blindness In Football: Will Serie A’s Green Kit Ban Make A Difference?

July 21, 2021

“It was because of the stripes; black and white against red and white. I struggled to tell the difference.”

Former Newcastle United defender James Perch is describing what it was like to play against Sunderland in the Tyne-Wear derby as a colour blind person.

“When you have a split second to look up and pass the ball, it can be quite a challenge,” he tells BBC Sport. “That game was definitely the toughest.”

Colour blindness, or colour vision deficiency (CVD), affects men disproportionately more than women. One in every 12 males have it, compared to just one in every 200 females. For football players, coaches and fans, it can compromise and even ruin an experience they dearly love.

Rather than an inability to see colour completely, it is difficulty distinguishing colours and is also known as ‘red-green’ deficiency. Those two colours in particular prove the most problematic in many cases, but not exclusively.

Serie A clubs will be banned from wearing green kits next season, with the exception of teams who already wear home shirts in that colour, on the request of TV companies. They claim the contrast with the pitch makes games tough to watch for the viewer.

‘There are occasions the games can be unwatchable’

“Generally, kits are different enough so I have no problem,” says Tom Harrison, a Preston North End fan from Ealing, London. “But there are occasions where the games can be unwatchable; red vs green is the worst. I do wonder when it happens: ‘Why wasn’t that dubbed a kit clash?'”

Kieran Maguire is a football finance expert, and he has been vocal about his struggles watching games as a CVD fan. He doesn’t agree that Serie A’s decision will tackle the problem, because kit clashes remain the most prevalent issue.

“As a colour blind person it has never been a major issue with green kits on a grass background. Players are moving objects on a static background that aren’t green, like skin tones, hair and shorts. Green-red is the most common form of the condition, it can cause problems with other kit clashes, too. In Euro 2020, it was difficult to tell the difference between Italy’s blue shirt and the referees’ pink one.

“I managed to be one of the Arsenal fans in the stadium for the first post-Covid game against Rapid Vienna in November,” Chris Towers recalls. “Arsenal weren’t in great form, so it wasn’t overly surprising to see Rapid make a decent start. ‘This lot are doing well’, I thought; then they lashed one into the top corner from 30 yards.

“I stayed seated and appreciated what I’d seen but the Arsenal fans around me leapt to their feet and cheered. It was only then that I realised we were wearing our away kit for the match and Rapid were in green shirts with white sleeves. I spent 10 minutes thinking they were Arsenal!”

‘You don’t feel like colour blindness is a disability’

For Perch, training was where he faced problems most, because of the similarities in two colours of bibs. Naturally, in a boisterous dressing room setting, his team-mates were always going to make light of the situation.

“I’d have to ask to change bibs, because it was often yellow and green. I’d ask for a blue one,” he says. “People took the mickey a bit but it was all in good fun; you’d get the usual ‘oh, what colour is the sky? What colour is the grass?’ When you look into it deeply, it can affect you. It can affect you quite badly, to be honest.”

Voicing concerns can be a real problem for CVD people, as Harrison attests.

“You don’t feel like colour blindness is a disability that needs to be taken seriously. It is something people take quite lightly. You think if you asked for a kit change because you’re colour blind, it would get laughed off.”

‘Just talking about this is important’

There isn’t a general consensus for what should happen next. But the conversation is gaining prominence, especially since fans complained about a clash when Liverpool, in their traditional red, met a Manchester United side wearing a green away kit back in January. But will Serie A’s move make a difference?

“It is progressive,” says Arsenal fan and CVD person Steve Jefferys. “It is good that broadcasters are starting to get ahead of the issue. Colour blindness often gets dismissed as people see the impact as minimal, but just talking about this is important.”

BBC Sport reported on the issue in September 2020, and the steps being taken.

The FA is aiming to raise awareness of the issue and how it affects the sport – it released this video

on Colour Blind Awareness Day (6 September) three years ago, to help educate people about the condition.

Towers, though, doesn’t believe the Premier League should introduce a similar ban.

“All the Premier League clubs and kit manufacturers need to do is ensure they have second and third-choice kits that will contrast with the teams they are visiting to make it more accessible. Not just for colour blind fans, but players too.”

Disabled UK Teenager Mounts Legal Challenge After Benefits Cut Off

July 20, 2021

A severely disabled teenager is to mount a legal challenge after his benefits were cut off while he was in hospital receiving treatment for a life-threatening infection, leaving him thousands of pounds out of pocket.

Cameron Mitchell, 19, and his mother and carer, Nicola Clulow, are seeking to overturn a Department for Work and Pensions (DWP) regulation that suspends disability benefits for adults after they have spent 28 days in hospital, on the grounds the NHS is meeting the costs of care.

They argue the DWP rule is irrational because it breaches Cameron’s human rights and cuts against the purpose of the personal independence payment (PIP), which is a non-means-tested benefit to provide support for disability-related costs, including care and assistance.

Disability campaigners have long argued PIP payments should continue while a person is in hospital as their disability does not go away, and the costs incurred by family carers can be higher at this time. The DWP argues the rule prevents so-called “double provision” – the taxpayer paying twice for the same thing.

Cameron has had a neurological condition since birth that has left him unable to speak or walk and requiring 24-hour care. He also has epilepsy, muscle disorders, and suffers from frequent chest infections.

He was taken to hospital in Newcastle, 60 miles from his Carlisle home, in late December, suffering from septic shock. He spent the next six months receiving treatment in a high dependency unit, initially in the paediatric section of the hospital and subsequently on the adult ward.

His mother and father were in daily attendance and, as his full-time carers, were on call at the request of NHS staff. When his condition stabilised they took him on daily trips outdoors, and provided essential care such as suctioning his chest, looking after his stoma bag, and checking for hard-to-detect signs of distress and pain.

“Cameron has been hospitalised many times during his life and we have always stayed by his bedside day and night because he needs us to communicate for him and to help the medical staff identify and treat his complicated seizures. He can deteriorate very quickly unless you know what to look for,” said Clulow.Advertisementhttps://07f9668f4a6c4debce9ab428c8b7442e.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

However, Cameron’s £151-a-week PIP payment – and his mother’s £67-a-week carer’s allowance – were stopped in May, several weeks after Clulow wrote to the DWP in March explaining the change in Cameron’s circumstances. They were also told they must repay hundreds of pounds in benefits dating back to the end of January.

“To suddenly be hit with the realisation that I was going to have to meet considerable extra costs and then find that I would have to do this on even less money caused me massive worry and stress when my only focus should have been on Cameron and his younger brother at home,” she said.

Carolin Ott, a solicitor with Leigh Day, which is acting on behalf of Cameron, said:“Cameron’s care needs are not and cannot be met by the NHS alone without the input of known carers, and those care needs do not suddenly cease to exist after Cameron has spent 28 days in hospital.

“Our client is arguing that the rule requiring suspension of PIP discriminates between disabled adults who require hospitalisation for more than 28 days, whose care needs cannot be met other than with the input of a known carer, as compared to those who are hospitalised for less than 28 days.”

A complicating factor has been Cameron’s age – even though he was 19 he was regarded as still a child by the education system because he attended a special school and therefore his mother received child benefit. Children are not subject to the 28-day hospital rule, yet DWP regulations treat him as an adult.

Until 2015, children were subject to a regulation that suspended their disability benefits after they had stayed more than 84 days in hospital. This was overturned after the supreme court ruled it was “grossly unfair” and in breach of human rights.

The case was brought by the family of severely disabled five-year-old Cameron Mathieson, whose benefits were withdrawn after 12 weeks of what turned out to be a two-year stay in hospital. Cameron, from Warrington, died in 2012.

A DWP spokesperson said:“We are looking at Mr Mitchell’s claim and will respond as soon as possible.”

Tokyo Olympics: Composer Keigo Oyamada Resigns Over Bullying At School

July 20, 2021

A composer has quit the team creating the Tokyo Olympics opening ceremony after it emerged he had bullied classmates with disabilities at school.

Old magazine articles resurfaced in which Keigo Oyamada, 52, boasted of the bullying and said he had no regrets.

After the scandal broke, the performer apologised. But the outrage in Japan has now led to his resignation.

It is the latest setback for the games, which are opening on Friday under the shadow of the coronavirus outbreak.

“I have become painfully aware that accepting the offer of my musical participation in the Tokyo 2020 Olympics and Paralympics lacked consideration to a lot of people,” said Mr Oyamada, who is widely known as Cornelius.

In a statement, the Tokyo 2020 organising committee said Mr Oyamada’s actions were “absolutely unacceptable”.

“In light of his sincere apology, we expressed a willingness to allow Mr Oyamada to continue his work on preparations in the short time remaining before the opening ceremony,” it said.

However, the committee later decided to accept his resignation and apologised for the “offence and confusion caused”.

The organisers of the Tokyo games have had to deal with several high-profile resignations.

In March, creative chief Hiroshi Sasaki quit after suggesting that a female comedian could appear as an “Olympig”.

Mr Sasaki said plus-size entertainer Naomi Watanabe could wear pig ears at the opening ceremony. He later apologised.

In February, Yoshiro Mori was forced to step down as the head of the organising committee after he made remarks about women that were criticised as “inappropriate”.

Mr Mori was quoted as saying women talked too much and that meetings with many female board directors would “take a lot of time”.

People With Learning Disabilities In England ‘Have Eight Times Covid Death Rate’

July 19, 2021

People with learning disabilities in England are eight times more likely to die from Covid than the general population, according to research that highlights a “hidden calamity” of the coronavirus crisis.

The study from the London School of Hygiene & Tropical Medicine, Oxford University and Public Health England found risks were particularly high for those with profound learning disabilities linked to Down’s syndrome and cerebral palsy. Among Covid patients with Down’s syndrome, for example, the risk of dying from the infection was 36 times higher than in the general population.

“This is really stark. I was shocked at the increased death rates for people with learning disabilities and particularly for people with Down’s syndrome,” said Prof Hannah Kuper, director of the International Centre for Evidence in Disability at the LSHTM.Advertisement

Previous studies have highlighted the increased threat that Covid poses to people with learning disabilities but the latest study published in the British Medical Journal is the first to analyse hospitalisation and death rates among people on the GP learning disability register through both major waves of infection in England. It shows that people with learning disabilities are five times more likely to end up in hospital after infection.

The findings are based on more than 17m NHS electronic health records analysed through Oxford University’s OpenSafely platform. Of 90,307 adults on the learning disability register, 538 (0.6%) were admitted to hospital with Covid, and 222 (0.25%) were recorded as Covid-related deaths.

Why people with learning disabilities are at such greater risk is not fully understood but major factors appear to be poorer treatment and access to healthcare throughout their lives. On average, people with learning disabilities die more than 20 years younger than the general population.

Kuper said discrimination, exclusion and living in residential care homes probably added to the risk for those with learning disabilities, while people who have Down’s syndrome may have additional biological risks such as underlying heart conditions and immune system dysfunction.

The results highlight the importance of ensuring that people on the learning disability register are prioritised for vaccines, but Kuper said more measures are needed, including better disease prevention in care homes, more training for carers and supporters, and clearer information on Covid for people with learning disabilities.

Few studies have looked at the increased risk that Covid poses to people with other disabilities, in part because comprehensive registers like the one for learning disabilities do not exist. “It’s shocking what we find for learning disabilities and it shows that people with learning disabilities should be prioritised for Covid vaccination, but it highlights that we don’t know much about people with disabilities more broadly who may be just as vulnerable,” said Kuper.

“With the arrival of Covid-19, families and specialist services knew people with learning disabilities were particularly vulnerable but were uncertain how to protect them,” wrote Ken Courtenay at the Royal College of Psychiatrists and Vivien Cooper at the Challenging Behaviour Foundation in an accompanying editorial. “While the focus was on older adults, whose mortality rates shocked the nation, a hidden calamity was also taking place among people with learning disabilities.”Advertisement

They added that it is essential to understand the risks faced by people with learning disabilities and how best to protect them, writing: “People with learning disabilities have the same rights as everyone else, including the right to good health and to be safe from harm.”

A spokesperson for the Down’s Syndrome Association said the organisation has worked closely with researchers in the UK and globally to swiftly share information that will keep people safe, including “easy read” resources.

“We are currently pressing the Joint Committee on Vaccination and Immunisation to recommend that young people aged 12 to 15 who have Down’s syndrome will also be vaccinated and await any announcement with anticipation,” they added.

Jarred McGinnis: ‘You Don’t Have To Be Disabled To Write About Disability, But You’d Better Get It Right’

July 19, 2021

As an author with a visible and physical disability, it was inevitable that I would be asked to write about disability in literature – I’m a paraplegic and full-time manual wheelchair user, for those keeping score. When I had my spinal cord injury more than 20 years ago, I didn’t wake up to a PhD in disability studies, but I was introduced to a menagerie of annoyances and prejudices from people and architecture, which has definitely been an education. It should also be noted that disability is a catholic church, of which we will all be a member at some point in our lives.

One of the hardest and most surprising lessons I learned is that as a disabled person you don’t get the final say in your identity. That is up to those around you. It’s galling to deal with on a daily basis and far more difficult than the lack of accessible toilets. This is one of the themes of my novel The Coward, in which a young man’s life is changed by a car accident. How do you resolve the dissonance between how you are perceived and how you perceive yourself? It’s something that 2016’s Seeing Red by the Chilean writer Lina Meruane, about a woman losing her sight, does incredibly well.

The poet Raymond Antrobus explores similar themes to my work – masculinity, disability, family – in his 2018 collection, The Perseverance, but achieves his impact without all the extra faff and narrative a prose writer is compelled to include.

I don’t choose to read a book because it has a disabled character: at best, that tells me nothing about the story and at worst, I know exactly what kind of story I’m going to read. However, I appreciate that representation is important, and one of the impetuses for The Coward came from not seeing anything resembling my understanding of the disabled experience in fiction. Writing it, I sought to undercut the trite “triumph over adversity” trope with humour and honesty.The Coward by Jarred McGinnis review – the road to redemptionRead more

I grew up in Florida and Texas, and the southern literary tradition is replete with stories of the marginalised. In a 1960 essay, “Some Aspects of the Grotesque in Southern Fiction”, Flannery O’Connor explained that this was because the literary orthodoxy leaned heavily on stories of “men in grey flannel suits”, while the southern writer knows that those men are the true grotesques. In O’Connor’s 1955 story “Good Country People, Hulga lost her leg in a hunting accident when she was 10. I don’t see a problem with Hulga’s vulnerability at the hands of a prosthetic-snatching preacher; the tussle of power and family dynamics in the story never made me question O’Connor’s depiction of disability. Hulga is a fully realised character drawn by the hand of a 20th-century master.Advertisement

I also adore Carson McCullers’s 1940 novel The Heart Is a Lonely Hunter. Her protagonist John Singer is the deaf mute on to whom the other characters project what they need – if there’s a perfect metaphor for disability among the able, it’s that. This novel captures the sadness and isolation of marginalisation like nothing else I’ve read.

Though not by a southern writer, and not exactly about disability, Katherine Dunn’s Geek Love (1983), features main characters whose rejection of normality as desirable, resonated both before and after my life in a wheelchair. There are definitely no “men in grey flannel suits” at the heart of this book. It is the story of Oly, a hunchback albino dwarf, who tries to thwart the devious Arturo, a boy with flippers for hands and feet, who starts a cult where devotees amputate their own limbs. At one point, Arturo is quoted as saying: “I get glimpses of the horror of normalcy. Each of these innocents on the street is engulfed by a terror of their own ordinariness. They would do anything to be unique.”Advertisementhttps://8f883bc5112975d42050b357a6a2da1d.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Life threw me quite literally under the bus,but I got up and thrived. Those without disabilities seem like children to me, innocent but inexperienced. They worry. They fear life with a disability, and are unsure if they have the strength for it. I no longer doubt it, and it has given me courage to do things I might not have if I hadn’t faced life from a wheelchair. I’ve always been surprised at the vehemence of the response whenever I say this, and I think it gets at the heart of people’s insecurities. They’ve taken for granted that they are better than the disabled, and it gets up their noses when you suggest otherwise.

For example, our family recently left the UK for Marseille. Why not move with your wife and two small children to a country where you don’t speak the language during a pandemic? Well, Brexit, the rise of home working, property prices, sun and sea, to name a few reasons, but mostly, because it didn’t frighten me. Compared to a traumatic spinal cord injury, it was going to be easy. After we moved, I came across a cultural tour of the city that included works by Claude McKay, the Harlem Renaissance writer. His novel Romance in Marseille was written in the early 1930s and left unfinished. It has only recently been published. It’s about an African man, Lafala, who is awarded a settlement due to a shipping company’s negligence that results in the amputation of his lower legs. That his disability is less of an impediment than his blackness points to a more nuanced and intersectional understanding of disability, race, class, gender and sexuality than many recent books overtly bound by their identity politics.

My family is limited by my disability. There are still a shocking number of places that I cannot go. Two contemporary books that give an honest portrayal of a family with a disabled member are Owl Song at Dawn (2015) by Emma Claire Sweeney, which looks at how the perception and care of individuals has changed over time while telling a beautiful story about sisters, and The Old King in His Exile (2017) by Arno Geiger, which is a memoir about the author’s father developing Alzheimer’s. As I said, at some point we will all have to deal with disability. The truth born out in these novels is – and it seems ridiculous to have to write this – that most families will do anything to ensure their loved ones are well and included.Advertisement

Pilcrow (2008), the first book in a trilogy by Adam Mars-Jones, follows in exquisitely rich detail a young boy, John Cromer, who has Still’s disease, a severe type of juvenile arthritis. For the first third of the book, he is in bed and dependent on his parents. Yet he is full of agency. Mars-Jones has done a masterful job of creating a classic coming-of-age story through the force of voice alone. There is a point in the book where he describes a banana so perfectly that I realised I hadn’t really noticed a banana before. It’s also full of wicked humour – in particular one scene, where the young boy, who is gay, hears the facts of life from his mother and is horrified at what he is told.

You don’t have to be disabled to write about disability, but you’d better get it right. As far as I know, Mars-Jones is able-bodied, but through his art he has created a lived character full of insights about himself and possessing a disabled body in a world that is overtly hostile to such bodies. The same goes for nonfiction works such as 2005’s The Lives of Dwarfs by Betty M Adelson, a tender and comprehensive social history of the subject, or the more recent Tell Me the Planets by Ben Platts-Mills, in which an able-bodied author sensitively portrays the challenges facing individuals with brain injuries during the UK’s austerity programme, which feels designed to harm the most vulnerable in society.

When I was in hospital, David Foster Wallace’s 1,000-page plus tome, Infinite Jest, which had just come out in paperback, appeared on my nightstand one morning. Someone had very thoughtfully understood I was going to be in bed a lot. The book’s adjacency of melancholy with humour still resonates for me, as does its understanding of the complexity of depression and addiction. I suspect Foster Wallace had a less nuanced understanding of physical disability, but I enjoyed his Quebecois radicals, les Assassins des Fauteuils Rollents or the Wheelchair Assassins, who terrorised the main characters. In the hospital, completely dependent on others, it was hopeful to consider an all-powerful shadowy cabal of wheelchaired men.

Disabled characters can be angry, pitiable, depressed, a problem for someone else or desiring of a cure. The problem comes when that is all they are. It’s vital to have access to stories where characters with disability reflect the experiences we have rather than the experiences we are assumed to be limited to.

Euro 2020: Met Chief Denies Policing Of Final Failed As Disabled Fans Tell Of Terror

July 19, 2021

A London police chief has revealed that Sunday’s Euro 2020 final could have been abandoned after ticketless fans “overwhelmed” perimeter security at Wembley stadium.

Jane Connors, deputy assistant commissioner of the Metropolitan police, said the force was committed to identifying those responsible and rejected claims that the policing operation had failed.

Connors said the Met commanders realised before the match on Sunday that a “high number of fans were arriving without tickets”, despite warnings to ticketless fans to stay away.

She said: “Soon after gates opened, the stewarding and outer security perimeter became overwhelmed and fans began pushing through security checks.”

She claimed that only the quick response of police commanders and “brave officers” at the scene prevented the stadium becoming overrun. “Without their immediate intervention, it is possible that this game could have been abandoned,” she said.

So far, 51 people have been arrested across London, including 26 who were detained at Wembley.

Connors added: “I do not accept that the policing operation failed and I stand by the difficult decisions made by police officers and the Met’s public order commanders.”

But she confirmed the policing operation would be reviewed by the Met and the Football Association. She said: “Where lessons can be learned, we will work with partners to ensure that future matches are not disrupted by a group of hooligans who are fuelled on alcohol.”England fan who stormed Euro 2020 final at Wembley defends his actionsRead more

Meanwhile, disabled fans have spoken of the terror of being caught up in the events on Sunday, as campaigners called for the review to include disability access at the stadium.

Ticketless fans have admitted targeting disabled entrances. Now disabled fans and their carers have described their fear as they became embroiled in battles between fans and stewards.

Scott Furlong, 39, said the scenes were shocking as he tried to get into the stadium with his 15-year-old son Kian, who has cerebral palsy. First they had to struggle to negotiate Wembley Way because it was so “mobbed with drunk people”.

Furlong said: “The smell of urine was stinging my eyes and pushing Kian’s wheelchair was like a snowplough – there were that many cans, bags and bottles.”

More serious problems began when it came to scanning their tickets at a separate disabled entrance in block N. Furlong said the door was twice kicked in by stewards trying to eject ticketless fans. “The door smacked against my son’s legs. He was shocked and I was furious.”

Furlong, who runs a sports equipment business in Coventry, said: “The stewards were probably in a tizz and didn’t know what to do, but kicking down a disabled entrance was just shocking – it could have hit someone on the head.”

Furlong is also angry with ticketless fans who were hanging around the disabled door to try to gain entry.

“Targeting disabled entrances just shows no compassion whatsoever. I don’t know what the stewards are paid, but I’m sure it wasn’t enough to deal with this lot.”

Kian said: “I was a bit scared when they came through the door. Daddy was shouting at them because the door hit my legs. I think they are idiots.”

Furlong said he managed to get a ticket for his son only after being repeatedly told by Uefa that the disabled allocation was full.

He said the organisation only relented when he emailed photographs of empty disabled seating areas at previous matches. “We’re hearing lots in the news about racism, but the discrimination in general was awful,” he said.

Tim Hiley, 29, an actor from Southampton, went to the game with fellow wheelchair-user Joe McIndoe and also witnessed ticketless fans being ejected by stewards via disabled entrances. “I was horrified by what I saw,” he said.

One ticketless fan posing as a steward in a hi-vis vest tried in vain to grab Joe’s wheelchair to blag his way through the disabled entrance.

Later, Hiley said, “all hell broke loose” when there was delay scanning their tickets. He said up to six stewards tried to hold back dozens of ticketless fans at a disabled entrance at Gate K where it has been claimed hundreds breached security.

Hiley said: “Eventually they were overcome with the sheer size of the crowd and people started running in. It was almost like a scene from Game of Thrones.

“A poor young lad with his leg strapped up and on crutches was floored by the crowd, and then a steward got flattened while trying to prevent people both getting into the ground but getting near me and my friend.”

He added: “The security was abysmal. It was the first time I’ve ever felt unsafe at an event and Wembley has some serious questions to answers.”

Level Playing Field, a charity for disabled supporters, has written to Wembley Stadium and the Met calling for an investigation on the impact on disabled fans.

The charity’s chair, Tony Taylor, said: “We must get some urgent answers about what happened, because the reports I’ve heard have been absolutely horrific. A lot of disabled fans are now really frightened about the level of security provided for them.

“People only got minor injuries, but it could have been much worse. We can’t just single out stewards, many of whom may not have been trained, it needs to be looked in the whole.”

Kamran Mallick, chief executive of Disability Rights UK, said: “It is deeply disturbing that disabled fans were subjected to injurious physical assault at a national sporting venue.

“We will be seeking urgent clarification from Wembley about how this was allowed to happen.”

A spokesperson for the FA confirmed that a full investigation will be carried out.

He added: We also apologise to anyone at the match whose experience was affected by this unprecedented level of public disorder.”

DisAbled Scientist Claire Malone’s TED Talk

July 16, 2021

Is this the female Stephen Hawking? Watch this talk and then watch this space!

Five Ways For Firms To Reach Customers With Disabilities

July 16, 2021

Increasingly for businesses, factoring in the needs of disabled customers from the start is becoming a crucial part of product development. Yet this huge market – the so-called “Purple pound” – remains largely untapped as many firms are failing to successfully adapt for customers with disabilities.

The purple pound refers to the spending power of disabled households and is now worth some £274bn a year to UK businesses, according to the advocacy group Purple.

As one in five of us is likely to experience some sort of disability in our lifetime – how can firms successfully access the purple pound market and improve their bottom line?

Emma Vogelmann, from disability equality charity Scope, hopes that the easing of Covid restrictions will be a turning point – ushering in a “new normal”, reducing some of the barriers faced by disabled people when accessing businesses and services.

1. Smart products will appeal across the board

Sam Latif, Proctor and Gamble’s (P&G) accessibility leader, realised many of its products were “not as inclusive or accessible as they could be” when she took up her role.

One example was its Herbal Essences shampoo and conditioner bottles, which felt “identical”, making it difficult for people with impaired sight to tell them apart, she says.

P&G has since added “tactical markings” to the bottles, so people can tell them apart. “We have four stripes for shampoo and we have circles for conditioner that are embossed on the bottle,” says Ms Latif, who describes herself as 97% blind.

Ms Latif says her own experiences have given her “insights that the company would need to understand things that we need to improve in our products”.

This shampoo and conditioner bottle redesign not only benefits the visually impaired, but also helps people with soap in their eyes or who are not wearing glasses or contact lenses to ensure they use the right product.

“The business case is clear. If we intentionally serve 20% of the population that previously maybe we hadn’t thought about, it just makes business sense,” says Ms Latif.

P&G has also remodelled its Olay skin care jar to make it easier to open for people with dexterity problems, she adds.

Emma Vogelmann at Scope says that with our lives moving more online as a result of Covid, firms need to be aware that some customers with disabilities may face barriers using certain websites and apps.

“One of the biggest things businesses could do is to make sure they are testing their websites and apps with a wide range of disabled people.

“It’s only through user-testing that you are able to pick up barriers faced by a specific group of people – you wouldn’t be aware of those areas unless [you yourself are] faced with them,” she says.

2. Ditch the boring

Robin Sheppard, co-founder of Bespoke Hotels, says that staying in some hotel rooms designed for customers with disabilities amounts to a form of “punishment”.

Mr Sheppard, who has Gillian-Barré syndrome – a rare and serious condition that affects the nerves – says rooms often have very limited views and “humdrum décor and no sense of style”.

His company has been trying “to put some style and some swagger into the look and feel of the bedrooms, and a much more joyous sense of colour and verve”.

The idea is that there is no perceptible difference between rooms designed for visitors with disabilities and the rest.

“Ultimately the aim has to be to have all hotels with a new level that it’s become a non-issue – it’s just normal, it’s just the way it is,” he says.

His work is paying off, with disabled-friendly rooms at one of his hotels each generating over £7,000 more revenue than other bedrooms.

3. Improve customer service and train your staff

Equal access to shop floors and places such hotels, restaurants and bars is vital.

“If you have the most accessible building in the world and then the security guard says, ‘No mate, you can’t bring a dog in here’, then you are not getting inside that building,” says Gavin Neate, the founder of Neatebox which has developed a training app to improve customer service.

“The truth is that unless staff understand how to interact with disabled people and the needs of disabled people, then all of these services and products are going to be absolutely useless.”

His top tips to improve access is to employ more people with disabilities in the first place, and then train all of the staff better.

“Ask your staff members about disability and what they know. Then constantly ask them…because you can’t just train somebody, tick a box saying you’ve trained and then expect that they are going to remember it forever.”

Some firms make a “great effort” to consider the needs of their customers with disabilities, but some could “certainly be doing more”, says Emma Vogelmann.

Businesses with a large number of disabled workers “do particularly well because their disabled employees are able to influences policies and decision which are made in that organisation and come from a place of lived experiences,” she says.

“Other businesses that chose to engage with their disabled customers also really benefit from that. They understand the value of the purple pound and are not going to ignore the huge spending potential of disabled people.

“When they take those steps to be inclusive, they really encourage loyalty from disabled customers to continue to use their brand because they feel valued,” she says.

Ms Vogelmann says she hopes businesses will retain some Covid restrictions, such as reducing the number of customers in a shop at the same time, to make it a “less overwhelming process” for some those with disabilities.

4. Build in change from the start

Redesigning existing products or services to make them appeal to a disabled clientele is much more expensive than thinking about disability from the start, says Sam Latif.

“If you try to bolt it on at the end, of course there is going to be a cost,” she says.

Proctor and Gamble has incorporated audio description into its TV and video advertising, at a cost of 0.001% of the marketing budget for the brand. “It’s nothing, yet you can reach 2.2 million people in the UK alone with that investment,” Ms Latif adds.https://emp.bbc.co.uk/emp/SMPj/2.43.6/iframe.htmlmedia captionThe power of the “purple pound” explained

5. Win the internal battle

One of Ms Latif’s tasks in her role has been in opening “the hearts and minds” of senior managers at P&G.

She made the executives experience things first-hand – by getting them to wear glasses simulating sight loss, using a wheelchair or wearing gloves that restrict hand movement.

“Then we’d get them to open a pack of Pampers or tell us the difference between shampoo and conditioner. At that point, really the penny drops,” she says.

But does there have to be a “light bulb” moment for businesses to access the untapped purple pound market? Do firms not have a moral duty rather than just being encouraged by potential profits?

“That’s a really interesting question,” responds Scope’s Emma Vogelmann. She says the purple pound “is just another argument to be made for why disabled people need to be included and why it is so important to have an inclusive offer”.

Ruth Madeley: Actress Says Taxi Driver Took Her Wheelchair Away

July 16, 2021

Actress Ruth Madeley has told of how a taxi driver took her wheelchair away following an argument outside London’s Euston station last month.

The Bafta nominee said the driver told her it was “too difficult” to drop her at an accessible entrance and it wasn’t his problem if she couldn’t use stairs.

After a dispute over payment, she said he then took her wheelchair, put it in his boot and refused to give it back.

Transport for London has apologised for the “utterly appalling” incident.

Graham Robinson, TfL’s general manager for taxi and private hire, said: “We have contacted Ruth for more details so we can carry out a full and urgent investigation.”

The actress, from Bolton, was nominated for a Bafta for her breakthrough role in the BBC’s Don’t Take My Baby before starring in 2019’s Years and Years.

She wrote on Instagram that the driver of the private hire taxi told her it was “too difficult” to drop her at the station’s accessible entrance because of heavy traffic, and that he “had seen me stand & so ‘knew I could walk'”.

‘My problem not his’

“When I told [the driver] that I can’t manage stairs, he proceeded to tell me that it was MY problem not his,” she explained.

“As if this wasn’t traumatic enough, he demanded his fare even though the journey had been prepaid.

“When I tried explaining this on the street, he became very agitated &, in sheer frustration, HE TOOK MY WHEELCHAIR from behind me without warning & carried it away to put in the boot of his taxi, leaving me on the side of the road.”

The actress’s mother managed to grab the wheelchair, although the driver “tried his best to stop her”, Madeley said.

Taxis and designated wheelchair-accessible private hire vehicles have a legal duty to carry wheelchair users in accordance with the Equality Act 2010. This includes a duty to provide mobility assistance without additional charge.

Madeley said that when she tried to report the incident to the Metropolitan Police, she was told it was not a hate crime and that no criminal act had taken place.

She added: “I was shut down and made to feel as though I was making a fuss over nothing.

“After more fighting & asking for support, the police told me that nothing can be done. No warning to the taxi driver or the firm, no accountability, no consequences…”

A Met spokesperson confirmed to the BBC that, while appreciating the upset caused, the force would not investigate because the incident is “not a criminal matter”.

The incident took place at the end of June on the day that it was announced Madeley is to star in BBC Two’s forthcoming factual drama Independence Day? How Disabled Rights Were Won.

Marking the passing of the Disability Discrimination Act, the film is based on the true story of the people behind a campaign of direct action that lead to significant steps forward in the battle for disabled civil rights in Britain.

Madeley said her experience reflected the discrimination experienced by disabled people “every single day” and was “clear proof that the fight for disability rights is far from over”.

DWP Policy Of Cold-Calling Disabled People Over Benefit Claims To End

July 15, 2021

The Department for Work and Pensions has agreed to change its controversial policy of cold-calling vulnerable and disabled people and trying to persuade them to accept lower benefit claims than they are legally entitled to.

The Guardian revealed last year that scores of disabled people who had appealed against a DWP decision on their benefit claim were called by officials and offered “decide right now” offers to abandon the appeal before it reached tribunal.

Having resisted calls to change their practice for more than a year, the DWP backed down the day before a judicial review challenge at the high court this week brought by a disabled claimant who said she was unfairly pressured into accepting a lower benefit offer.

The claimant, known as “K”, had argued that the DWP’s practice was unlawful and discriminatory. People had felt under pressure to accept the offer, sometimes worth thousands of pounds a year less than they were entitled to, were not told about their appeal rights, or given the opportunity to discuss the offer with representatives.

K had made a claim for the personal independence payment benefit in 2017 but was refused. She applied again in 2019 and was awarded only a small amount. She appealed against the decision after her GP advised her that her serious mobility problems meant she was entitled to the highest levels of benefit.

After the appeal process started, she was called by the DWP, without warning, from a “withheld” number and told she had an hour to accept a deal that was higher than her award but less than she was entitled to. She was told “tribunals are not very nice to go to” and asked if she wanted to risk losing all her benefit.

K, who has fibromyalgia and epilepsy, and needs help with daily washing, accepted the offer but said afterwards she felt pressured into making the decision. She said she was “haunted” by her choice and decided to challenge the DWP after seeing press reports exposing the practice.

She said: “I wasn’t given the time I needed to speak to my mum or seek any advice. They didn’t give me the information that I needed to work out if it was what I was entitled to, and they didn’t tell me I could accept the offer and still appeal the decision if I wanted.”

She added: “It feels as though the DWP has been picking on extremely vulnerable people and using the fear of going to a tribunal or losing an award to pressure people into accepting less than they should be getting.”

K was offered a deal that amounted to £1,500 a year less than she would have been entitled to if she had successfully pursued the tribunal.

Disability benefit decisions are notoriously unreliable, and the process of appealing against them is long and stressful. The vast majority of benefit appeals cases that reach tribunal find in favour of the claimants.

Sara Lomri, K’s solicitor at the Public Law Project, said: “Unfortunately, a practice has developed over the last few years at the DWP whereby benefits decision-makers have been putting pressure on eligible disabled benefits claimants to accept less than their statutory entitlement. Most people would be outraged if they knew that a friend or vulnerable relative was treated this way.

“Judicial review is always a last resort, and this case shows why there must be an accessible legal route for people to hold public authorities to account. The law is there for us all to follow, and when the state makes a mistake, acts unlawfully, and will not change itself, there must be a way to correct it.”

The Law for Life charity, which collected many of the cases, was also involved in the case.

The DWP, which was ordered to pay 90% of the costs of the case, has agreed to issue guidance to officials making it clear they should not make so-called “partial lapse” awards similar to that made to K. Staff involved in these cases will be given mandatory retraining.

The DWP has been approached for comment.

Compulsory Vaccinations For Care Home Staff In England Backed By MPs

July 14, 2021

MPs have approved compulsory vaccinations for care home staff in England, but a number of Conservatives rebels voiced anger at the plans.

From October, anyone working in a Care Quality Commission-registered care home in England must have two vaccine doses unless they have a medical exemption.

The House of Commons approved the regulations by 319 votes to 246.

But Tory MPs criticised the government for not publishing an impact assessment of the policy before the vote.

Health minister Helen Whately told MPs the “impact assessment is being worked on”.

Almost 30,000 more care home residents in England and Wales died during the coronavirus outbreak than during the same period in 2019, ONS figures released this month showed.

Ministers have previously expressed concern about the low take-up of the vaccine among some care home staff.

Conservative former minister Mark Harper, who chairs the lockdown sceptic Covid Recovery Group, said: “If there’s uncertainty, share the uncertainty with the House.

“It isn’t good enough to expect us to vote on something that is difficult and controversial and complicated, and not share the information with the House that the minister has at her disposal. It is an abuse. It’s not good enough.”

Conservative MP William Wragg said he was “in despair”, adding: “The government is treating this House with utter contempt. Ninety minutes on a statutory instrument to fundamentally change the balance of human rights in this country is nothing short of a disgrace.”

Mr Wragg went on to raise the case of a care worker who fears losing her job as a result of the policy, asking: “Is that what we’re prepared to do to our fellow citizens as a Conservative government?

Labour’s Rachael Maskell added: “We’re having to make a decision in the House this evening on the balance of risk and therefore we haven’t been given the data because the impact assessment hasn’t come forward.”

Deputy Speaker Nigel Evans said it was a “totally unsatisfactory” situation and he would raise the issue with the Speaker, Sir Lindsay Hoyle.

‘Totally unsatisfactory’

Care minister Ms Whately said guidance would be forthcoming, but suggested managers could discuss the vaccine with staff or look at an alternative role for those who did not want to be vaccinated.

But she acknowledged there were not “that many roles” that did not involve being in the care home.

She said in that situation, if a staff member did not want to be vaccinated, then a notice period could follow with a “fair process”.

Care organisations have previously warned that compulsory vaccinations could cause significant difficulties in a sector that already struggles to recruit enough people.

The British Medical Association, which represents doctors, warned compulsion was “a blunt instrument that carries its own risks”.

Governments in Scotland, Wales and Northern Ireland have said they have no plans to make Covid jabs mandatory for care home staff.

The move to mandatory vaccinations for care home staff in England follows a consultation by the Department of Health and Social Care, launched in April, two months after the government said it had met its target of offering all front-line care workers a first dose of a vaccine by mid-February.

At the time, it said 47% of English care homes for older people had more than a fifth of staff yet to take up the vaccine, despite staff at all eligible care homes having been offered vaccines, with the vast majority of homes having had repeat visits by vaccine teams.

End To Covid Rules For England ‘Leaves 3.8m Vulnerable People Feeling Abandoned’

July 14, 2021

Cancer patients, disabled people and other clinically extremely vulnerable groups say they will feel unsafe stepping the house after hearing that mask and social distancing requirements are to be abandoned, charities have warned.

Campaigners estimate that 3.8 million people have been left feeling abandoned by the government’s shift towards promoting “personal responsibility” as the sole means of navigating the surging Covid-19 infection rates in England.

It means many people wary of coming into close contact with others who are infected will have to resort to self-imposed shielding.

The new government guidance for England advises those most at risk from the virus to continue to be cautious, meeting friends and family outside where possible and wearing face coverings on public transport.

Many vulnerable groups, such as those with underlying conditions or elderly people who shielded last year, were prioritised for vaccination. Roughly half of the UK is now fully vaccinated but Covid-19 cases are once again surging, driven by the highly transmissible Delta variant and the lifting of some restrictions.

Certain people with underlying conditions have weak immune systems that render the vaccines less effective, leaving these groups anxious about their fate.

“Macmillan Cancer Support is hearing huge anxiety about the removal of restrictions at the same time as cases are rising very fast,” said Steven McIntosh, Macmillan’s executive director of advocacy and communications. “Cancer patients feel they’re at risk of just going backwards, and feel unsafe stepping outside the house.”

It was “very frustrating”, McIntosh added, as the government had publicly confirmed its plans to discard almost all Covid social restrictions on 19 July but then released guidance for clinically vulnerable people only later in the evening, without consultation with the groups representing and supporting those individuals.

He said: “The government hasn’t learned the lessons of the past where big announcements for the whole of the country about … changes to restrictions weren’t accompanied by advice for those people who are most at risk and most anxious about those changes.”

Clinically extremely vulnerable people also include those with Down’s syndrome, cystic fibrosis and severe chronic obstructive pulmonary disease.

Louise Rubin, the head of policy and campaigns at the disability equality charity Scope, said: “Throughout the pandemic clinically extremely vulnerable people have felt forgotten and that their lives are seen as expendable. This guidance will make many clinically extremely vulnerable people feel they are on their own, having to rely on others taking responsibility, and without the support to keep themselves safe.”

Elizabeth Cleaver, a solicitor at the London-based law firm Bindmans LLP, said her firm had had a number of inquiries from concerned parents who had been shielding their clinically vulnerable children and were keen to have them vaccinated against Covid.

Although the Medicines and Healthcare products Regulatory Agency has given the green light for the use of the Pfizer/BioNTech vaccine for children over the age of 12, the Joint Committee on Vaccination and Immunisation (JCVI) has not yet issued a recommendation for vaccinating under-18s.

Cleaver said: “We haven’t issued proceedings because we are awaiting confirmation as to whether there is going to be some JCVI guidance published this week … we’re giving the government the last opportunity this week to actually issue that. Obviously the opening up [of society] on 19 July has really increased anxiety for these families because their clinically vulnerable children are even more vulnerable.”

Other organisations have raised the alarm about the confusion the new measures will bring to workplaces. Businesses say they do not have the full picture they need to properly plan for unlocking.

Claire Walker, a co-executive director of the British Chambers of Commerce, said: “Business leaders aren’t public health experts and cannot be expected to know how best to operate when confusing and sometimes contradictory advice is coming from official sources. This could lead to an inconsistent approach with different businesses reopening at different times and with different requirements, which could damage public confidence, give firms a huge logistical headache, and create a real risk of the economic recovery splintering.”

Kevin Rowan, of the TUC, said the effective, enforceable health and safety guidance now being removed made things very difficult for employers. He said: “It’s going to be a situation where individuals may or may not wear face masks. Some employers may require it, others won’t. But none of those issues are going to be legally enforceable. So if you’re in the Health and Safety Executive or in a local authority’s environmental health [section], there’s nothing for you to enforce.”

Have The DWP Ended LEAP Awards?

July 13, 2021

With many thanks to Benefits And Work.

 

Letters seen by Benefits and Work suggest that the DWP may have reached the end of awarding back-payments under the LEAP review and are now simply writing to claimants to tell them they do not have any conditions that are relevant – even though this may be wrong. We are still anxious to hear from claimants via a brief survey if you have received a LEAP letter in the last three months.

In a decision known as MH, it was found that the DWP had been misapplying the law in relation to overwhelming psychological distress and following the route of a journey.

Claimants should be awarded the standard rate of PIP mobility if, because of overwhelming psychological distress, they need someone with them to follow the route of an unfamiliar journey.

And they should be awarded the enhanced rate if they cannot follow the route of a familiar journey without having someone with them, for the same reason.

The LEAP review was set up to identify claimants who had missed out on awards because the DWP had got the law wrong.

However, doubts about the genuineness of the review have increased because of the tiny number of claimants who have received arrears of PIP, compared with the number the DWP originally said would be entitled.

MH Case Payments Bar Chart Final Draft

Previous letters seen by Benefits and Work told claimants that the DWP had looked at their claim again and decided that their award would not change. These were decision letters which could be challenged.

However, most of the letters claimants are sending us copies of now state that:

“The main health conditions we have for you on our system indicate your PIP claim(s) are not affected by these changes.”

The DWP said that they would look first at claimants they thought were most likely to be eligible for arrears. The fact that they are now contacting claimants they do not think are affected suggests that they have finished contacting those they view as potentially eligible.

The text of the letter also suggests that these claims are not being looked at individually by decision makers with copies of a claimant’s previous PIP application in front of them.

Instead, it is possible that the DWP is relying on the main and secondary conditions that are entered into the records ‘system’ the DWP keep on each claimant.

However, if a claimant’s mental health was not considered to be a major factor in their claim then it is unlikely to have been recorded on the system.

So, for example, if a claimant had a heart condition and COPD, then it is very unlikely that the DWP would have chosen anxiety and depression as one of their two main disabling conditions, even if it was severe.

This is particularly the case as the DWP were getting the law wrong and taking very little account of anxiety in relation to mobility.

Certainly, claimants we are hearing from who have received these letters are telling us that they do have conditions such as PTSD, anxiety and depression and they do consider that they should be covered by the LEAP review.

But, once again, the way the letter is written is unlikely to make claimants want to contact the DWP, particularly if they have not been following this story via Benefits and Work. In particular, nothing in the letter tells claimants that their award will only go up, not down, if they are affected by LEAP.

These letters do not appear to be decision letters, they do not carry a right of appeal. They are simply informing claimants that the DWP doesn’t think they are due any arrears and if the claimant thinks differently they need to contact the DWP.

Claimants are invited to ‘talk to your carer, family and friends or your support worker’ if they need some help to find out if they might be affected. The letter doesn’t reveal why these people might have expertise in benefits law that the claimant lacks.

Benefits and Work members who receive one of these letters but consider that the LEAP review does apply to them can download our guide to PIP claims and reviews, which has nine pages solely on the subject of ‘Planning and following journeys’. Members can also view the 2 hour webinar on ‘Claiming the PIP mobility component on mental health grounds’ on the PIP page.

We are still anxious to hear from claimants who have received a LEAP letter in the last three months, whatever sort of letter it might be.

We have a brief survey, just 9 questions, that you can complete here.

The full text of the letters we are seeing follow this pattern, and are signed by an unnamed ‘Office Manager’, although there may be variations.

FULL LETTER TEXT

Personal independence Payment
Changes in PIP law

Dear [claimant],

There have been some changes in Personal independence Payment law that affect how the Department for Work and Pensions decides PIP claims.

The main health conditions we have for you on our system indicate your PIP claim(s) are not affected by these changes.

The changes are to do with:

  • how overwhelming psychological distress is considered when assessing someone’s ability to follow a journey. Overwhelming psychological distress is distress related to a severe mental health condition, intellectual or cognitive impairment. It may result in a person being unable to complete a journey.
  • How we decide whether someone can carry out an activity safely and if they need supervision. We now consider the seriousness of any harm that might happen, as well as the likelihood of it happening.

Who is likely to be affected

The people affected by these changes will most likely have a severe:

  • cognitive impairment
  • intellectual impairment
  • developmental impairment
  • mental health condition

Or a condition affecting the brain or nervous system with symptoms such as:

  • blackouts
  • fits, or
  • faints with loss of consciousness

If you think your PIP claim(s) could be affected by these changes please phone or write to us using the details on the front page of this letter. If we need more information from you, we will contact you to request this. If you do not currently have a PIP claim or award and your circumstances have changed you may need to make a new claim.

If you need some help to talk about whether you might be affected you can also talk to your carer, family and friends or your support worker. Local support organisations can also provide independent help and support. You can find their details online, at your local library or in the telephone directory.

There is more­­ information about these changes on http://www.gov.uk/dwp/pip-changes

Yours sincerely,

Office Manager

PIP Disability Benefit Claims ‘Misrepresented’ By Assessors

July 12, 2021

A man seeking disability benefits has claimed he was misrepresented in a report made by Capita, the firm which assesses benefit claimants.

A Nolan Show investigation found that he was first assessed by Capita and scored zero points – meaning he was classed as not needing benefits.

The Department for Communities looked at his case again and also scored zero.

The Nolan Show knows the testimony given by the man to both Capita and the department.

It shows how his answers appear to have been misreported in the final assessments.

It comes after a scathing report from the Northern Ireland’s public services ombudsman, Margaret Kelly, on the system for Personal Independence Payments (PIP) assessments.

Capita provide the assessment service on behalf of the Department for Communities.

Communities Minister Deirdre Hargey has committed to bringing the service in-house and has said people have the opportunity to appeal to an independent tribunal.

Significant debt problems

Mark, which is not the man’s real name, is a vulnerable adult with a history of mental health issues, including depression and anxiety.

He told disability assessors that he was not able to leave the house on many occasions due to the extent of his anxiety.

The Capita assessor asked him: “And would you look at the internet? eBay, Amazon, YouTube?”

Mark responded that he would go on YouTube but for “the likes of Amazon, I just don’t have the money to buy anything”.

However, Capita’s official report claimed Mark said “he will surf the internet and shop online”.

Mark also told Capita he had significant debt problems after being asked whether he pays his bills.

He added that the Citizens Advice Bureau had set up a debt management plan to help him.

However, Capita wrote in its assessment: “He states he can make simple purchases and understands the value of money. He states he will pay his own bills and has good memory and cognition.”

The Department for Communities heard a “mandatory reassessment” of the scoring and Mark also told the department he had “a debt management plan with the Citizens Advice Bureau Lisburn for £55,000 worth of debt”.

However, the department gave him zero points for his ability to manage complex budgetary decisions.

‘Difficulty washing and walking’

After getting no points from Capita for incontinence, Mark told the department’s appeals service of instances of severe incontinence. He was awarded no points on reassessment.

He also reported not washing himself for up to 10 days at time, how his son would help him shower and that he had difficulty walking. Again, he received no points.

The Department for Communities said the minister is committed to ending privatisation of the service and bringing it “in-house” in partnership with the Department of Health but that such a partnership was “not currently feasible”.

“A number of improvements to the assessment process have already been introduced, including the completion of PIP award reviews in-house, where sufficient evidence is available,” they added.

“This has reduced referrals to the PIP assessment provider by 25%.”

In a statement, Capita told the BBC “all our assessors are qualified healthcare professionals including former NHS nurses, physiotherapists, occupational therapists or paramedics”.

It said the assessors have been “specially trained in assessing disability needs” and are supervised by the firm’s clinical governance team, which also consists of current and former NHS staff.

“A sample of claimants are surveyed monthly following their PIP assessment by an independent research company. Over the last 12 months, more than 98% of those surveyed have said they were satisfied or very satisfied with our service.”

Hollyoaks’ Rhiannon Clements On The Soap’s Disability Representation

July 12, 2021

Hollyoaks star Rhiannon Clements has opened up about playing Summer Ranger on the Channel 4 soap, praising the series for its on-screen representation of disability.

Summer first appeared in the village back in 2020, with the daughter of the evil Cormac Ranger soon carving out her own villainous path – something Rhiannon is proud of in more than one way.

Speaking to Enable Magazine, Rhiannon opened up about being an actress with an upper limb difference, explaining why Hollyoaks‘ on-screen portrayal of disability has been “important”.

Sharing the reaction she’s received from viewers, Rhiannon said: “My favourite part is when I get messages from people who have seen me on Hollyoaks and they have an upper limb difference, or a member in their family does, and seeing me has made them more confident. Even showing the representation has been important.”

It’s not just the visibility of Rhiannon’s limb difference that has helped, the ‘Oaks star added – it’s also the show’s decision to cast her character as a baddie.

“What is brilliant about being in Hollyoaks and playing Summer, she is a villain and that is part of the character and she’s not someone to look after,” she explained. “Just because of your physical attributes, that doesn’t dictate the type of person you are.

“Actually, this character is a nasty piece of work and it has nothing to do with her physical attributes.”

Reflecting on the impact of her role, Rhiannon added that she would continue to “give back” thanks to her new-found following from Hollyoaks.

“It is great to be able to work with Superhero Series and give back and show that we’re all in this together, and we’re battling against the lack of representation and everything that is wrong with disability representation,” she said.

Benefits Rules To Be Eased For Terminally Ill Claimants

July 9, 2021

Terminally ill people with less than a year to live will get fast-tracked for benefits after ministers said they will expand the timeframe for those eligible for special consideration.

Previously patients had to prove they had less than six months to live and charities say many died without their cases being resolved.

It is two years since a government review was launched into the issue.

Campaigners say it is a “significant step forward”.

They have been seeking a change to how terminally ill people access benefit support, known as Personal Independence Payments (PIP).

Under the current rules, patients in England and Wales must provide medical proof that they have six months or less to live to access benefits quickly and at a higher rate.

And if they live longer than three years after benefits are awarded, they have to be reassessed.

Charities and some MPs say people have endured distress trying to wade through red tape, filling in forms and attending interviews with benefits advisers.

And some patients have died waiting for the welfare benefits they need.

2px presentational grey line

Do I only have six months to live?

Helen Nicell, who has stage 4 cancer, told the BBC her payment was reduced initially when she was moved from disability allowance to PIP because a doctor could not say she was likely to die within six months.https://emp.bbc.co.uk/emp/SMPj/2.43.6/iframe.htmlmedia captionPersonal Independence Payments: ‘Have I less than six months to live?’

She said: “To have to ask your consultant – do you think I may only have six months to live – when really they can’t answer that, it’s a very, very difficult question and very difficult to live with.

“The consultant said it was actually impossible to put a prognosis on how long it would take.

“The cancer is in my spine and at any point it could spread in to one of my organs” she said.

She added: “When you have retired from work and you have a budget and you have no other income” the uncertainty of waiting for an assessment to come through is very hard.

2px presentational grey line

In a written statement to MPs, Minister for Disabled People, Justin Tomlinson, said the changes will “increase much needed support for people who are nearing the end of their lives”.

He said the new 12-month approach “will ensure people get the financial help they need as quickly as possible in the most challenging of times.”

“Under the updated rules, clinicians still have discretion and will be supported by a realistic and straightforward definition” he added.

In an interview with BBC News, Mr Tomlinson said under the special rules, payments can be made within four to five days rather than 16 weeks.

He said the changes will bring the benefits system in line with the NHS definition of terminal illness, which is having less than twelve months to live.

“What clinicians were telling us was about removing duplication”, he said.

“The GP and the patient would have this devastating awful conversation at 12 months as part of the NHS role and then they would have to come and have it a second time with us to get the GPs the [benefits] form at six months”.

Matthew Reed, Chief Executive of Marie Curie welcomed the announcement as a “significant step forward”, and a “tribute to all those who bravely shared their experiences of the benefits system”.

“This will help ensure that more dying people can concentrate on making the most of the limited time they have left, rather than worrying about their finances.

“There is more to be done, but this is important progress and we look forward to working with the UK Government to bring in this change as quickly as possible”, he said.

Sally Light, CEO of the Motor Neurone Disease Association said the recommendations “must be implemented quickly”.

“No more people already facing the most difficult time of their life [should] have to wait to claim the support they not only desperately need but are entitled to”.

The changes will not happen immediately – ministers say the law will be changed within 12 months “when parliamentary time allows”.

The reforms in England and Wales follow similar pledges in the devolved administrations in Northern Ireland and Scotland.

Last week the Stormont Assembly signalled it intended to scrap the six month rule for those with terminal illnesses.

And in 2019, Holyrood said it intended to do the same, with guidelines for clinicians due to be published this summer.

‘Down’s Syndrome Abortion Law Doesn’t Respect My Life’

July 8, 2021

A woman with Down’s syndrome who is challenging abortion law’s stance on babies with the condition says the legislation “doesn’t respect my life”.

Heidi Carter, 26, from Coventry, is one of three claimants whose case against the UK government at the High Court began on Tuesday.

As law stands, foetuses with Down’s syndrome may be terminated up to birth.

Jason Coppal QC, the claimants’ barrister, told the High Court the current law “stereotypes and demeans”.

He told Lord Justice Singh and Mrs Justice Lieven that claimant Máire Lea-Wilson “believes it is morally and ethically wrong to destroy a life on the grounds of a disability.

“But what we will try and establish is that it is legally wrong”.

Lawyers argued at the two-day hearing that the law is incompatible with the European Convention on Human Rights and therefore unlawfully discriminatory.

“Two of the claimants are in the minority of foetuses who were diagnosed with the condition and not aborted and they live happy and fulfilling lives, as evidence shows the majority of people with Down’s syndrome do,” Mr Coppal told the court.image copyrightPA Mediaimage captionMáire Lea-Wilson, 33, said she was offered a termination two days before her son Aidan was born

In England, Scotland and Wales, there is a general 24-week time limit to have an abortion.

But law states terminations can be performed well beyond that window if there is “a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”, which includes Down’s syndrome.

Mrs Carter, who campaigns under her maiden name of Crowter, said: “I am someone who has Down’s syndrome and I find it extremely offensive that a law doesn’t respect my life, and I won’t stand for it.

“I want to change the law and I want to challenge people’s perception of Down’s syndrome. I want them to look at me and say ‘this is just a normal person’.”media captionDown’s syndrome: Abortion case heads to High Court

Ms Lea-Wilson, of west London, said she was bringing the legal challenge because she wanted her son Aidan “to grow up knowing he’s not someone people have to cope with, he’s not a burden to society, he is a wonderful human being in his own right”.

“I have two sons who I love and I value equally and I can’t understand why the law doesn’t.”

She said: “I was 34 weeks pregnant when I discovered Aidan had Down’s syndrome and I was asked if I wanted to terminate the pregnancy in the context of a lot of medically-biased information, and my own grief, three times.

“The last time I was asked to terminate the pregnancy was two days before he was born.”image copyrightReutersimage captionProtesters gathered outside the High Court ahead of the case

The challengers, supported by campaign group Don’t Screen Us Out, held a demonstration outside the Royal Courts of Justice in London earlier.

Mrs Carter said the legal bid was not about challenging women’s right to choose, which she respected.

But she said of expectant mothers whose unborn babies had been diagnosed with Down’s syndrome: “I just want them to get the right information, and just meet someone who has [the condition].”

Clare Murphy, from the British Pregnancy Advisory Service, told BBC Breakfast: “We’re talking about a relatively small number of abortions every year that take place after 24 weeks.

“These are incredibly challenging, heartbreaking circumstances involving often very, very much wanted pregnancies, where women have to make really tough decisions.”

Disability Benefits And Cohabitation

July 7, 2021

Benefits exist to support people in times of need. But for some disabled people, household means-testing has led to benefits being taken away making them uncomfortably reliant on their partner and in debt due to the extra living expenses disabled people incur. Rachel Charlton-Dailey finds some people have vowed never to marry or cohabit again.

Short presentational grey line

“I knew he wasn’t going to support me,” says Emma*, from Essex, who had early anxieties about her relationship.

The 32-year-old and her boyfriend had been together for two years when they decided to take their relationship to the next level.

Emma moved out of her home and into his. She was excited but living together meant that her income-related Employment and Support Allowance (ESA) was immediately stopped.

ESA is granted to adults who struggle to find work because of illness or disability.

Emma, who has fibromyalgia, ulcerative colitis, and a visual impairment, is unable to work and received £114.10 a week when she lived alone. But when she moved in with her boyfriend, their income and savings were taken into consideration jointly, meaning Emma no longer qualified.

From that point onwards, she was expected to rely financially on her partner.

“I never wanted him to support me but being ineligible for benefits put me in a vulnerable position,” she says.

They agreed to split the cost of living – Emma would pay a third, using her savings to do so, while her partner would pay two-thirds, but this soon changed the dynamics of their relationship.

“He earned five times more than I did and he held it over me. I was still scraping pennies together,” she says.

“I relied on him for daily tasks a lot so it was a toxic addition to our relationship because he was only interested in caring for me under his terms. He’d only buy food he liked. Whatever worked for him had to work for me.”

Emma says the relationship became physically and sexually abusive and, looking back, he had used coercive control to isolate her from friends and family.

But with no income, she was unable to leave. And if she did leave it could take several weeks for her to be re-assessed and paid ESA once more and she wouldn’t have a roof over her head.

“When I felt the relationship was over, my second thought was ‘you can’t afford to lose this relationship, you have nowhere to go’.”

According to SafeLives, a domestic abuse organisation, disabled people typically experience abuse for an average of 3.3 years before seeking support, compared with 2.3 years for non-disabled people. After receiving support, disabled victims are 8% more likely to continue to experience abuse.

While means-testing is a widely used tool to determine how much money people should get from the benefits system, the impact of benefit reductions can be greater on disabled people because of the additional daily living expenses they have.

Extra costs like specialist equipment, powered wheelchairs, or taxi rides can set disabled people back £583 per month on average, according to the charity Scope.

This is true for Billie*, 29, from Carlisle, who has ME and Ehlers-Danlos syndrome, which affects connective tissue and can cause pain and fatigue. She relies on taxis to get to her regular hospital appointments.

Covid-19 saw her lose her financial independence when she was furloughed from a local entertainment venue. She qualified for ESA to top-up her payments, but when her household’s income was taken into account, she lost money every time her partner was rewarded at work.

“If he so much as earns £50 more for doing a tiny bit of extra work or getting his petrol covered then my payments decrease,” she says. “It got cut down even more in December when he got a brief ‘pay rise’ also known as a £100 Christmas bonus.

“This can be infantilising for disabled people, as though we can’t have our own money,” Billie says. “It also means disabled people can’t live with or marry their partners for fear of losing their only income source.”

As well as ESA, Billie received £490.20 per month through another benefit, Personal Independence Payment (PIP), which is given to people with long-term health conditions in order to cover extra living costs. It is not means-tested or affected by any other benefits you might qualify for, but Billie says they were still “scraping by” and sometimes struggled to buy food.

“The system sets us up to fail. I don’t want to be dependent on my boyfriend. I should be able to give my half, not being subbed like a child,” she says. “If you hit a bad patch and can’t work as much you’re kind of screwed.”

The current system has left some disabled people feeling they have to choose between relationships and financial security.

The Disability Benefits Consortium (DBC), a strong network of over 100 charities and disabled people’s organisations, wants this changed.

Geoff Fimister, its policy co-chair, says means-tested benefits can result in a disabled person being “forced to be dependent on a non-disabled partner”.

He says Covid-19 has likely made the situation worse and the pandemic is a “sharp reminder that there are unresolved equality issues”.

The DBC says it wants to see disaggregation – where means-testing would be taken out of the assessment and be based solely on the individual’s need.

It is this current inequality that Kelly*, 26, from Leeds, says she faced when her marriage meant gaining a husband, but losing her income.

“Nobody told me I’d lose my money when we got married and moved in together,” she says.

Kelly has EDS, Endometriosis, ADHD and uses a wheelchair. She relied on ESA as she is unable to work and didn’t live with her now-husband before they married.

Due to illness and a mix-up with appointments, she didn’t report her marriage for a month and assumed everything was fine.

Then, a dreaded brown envelope from the Department for Work and Pensions (DWP) landed on her doormat.

“I got a letter claiming I hadn’t reported my marriage, they’d overpaid me and I had to pay them a month’s worth of ESA back and they’d decided to add a £50 fine on top. They were asking for about £350 while at the same time telling me I had no claim to ESA because my husband worked.”

Kelly had no idea her benefit payments would stop because of her husband’s income and was at a loss when they did.

She was moved on to another means-tested benefit – Universal Credit – which disabled people are advised to apply for if they don’t qualify for ESA. But she says that doesn’t feel stable because their household income fluctuates each month and affects her payments.

Kelly has had the benefit stopped twice already, due to her husband’s wages coming in early at Christmas.

“We are punished simply for getting married and it feels so unfair that if I was abled and working it wouldn’t matter.”

The couple have struggled to pay bills and relied on Kelly’s parents for loans.

The DWP said: “Universal Credit and ESA provide a welfare safety net for those in most need, and as such it’s right that household income and savings are taken into account when assessing eligibility for these benefits.”

Emma managed to escape her situation when her partner ended the relationship.

But it has left her wary.

“I had become partially financially reliant on him purely because the government had stripped my right to benefits for daring to cohabit with a partner. It felt humiliating once I finally realised how vulnerable I’d been.

“In the future, I don’t plan on ever living with a partner again, to protect myself.”

*All names have been changed and those receiving ESA in this article are in receipt of income-based ESA which, although widely still in-use, can no longer be applied for by new applicants.

Long-Covid Benefits Timebomb

July 6, 2021

With many thanks to Benefits And Work.

The DWP is sitting on a Long-Covid benefits timebomb which may be about to explode, if statistics from the ONS and the DWP’s own figures are to be believed. Hundreds of thousands of people are now potentially eligible for PIP and other benefits, as a result of developing the condition.

Figures released by the ONS last week stated that:

962,000 people were experiencing symptoms of Long-Covid that had lasted more than four weeks.

385,000 people who were still experiencing symptoms first had (or suspected they had) COVID-19 at least one year previously.

Symptoms adversely affected the day-to-day activities of 634,000 people (65.9% of those with self-reported Long-Covid), with 178,000 (18.5%) reporting that their ability to undertake their day-to-day activities had been “limited a lot”.

Fatigue was the most common symptom reported as part of individuals’ experience of Long-Covid (535,000 people), followed by shortness of breath (397,000), muscle ache (309,000), and difficulty concentrating (295,000).

Anyone familiar with PIP qualifying criteria will recognise that may of these symptoms are extremely common grounds for eligibility for PIP.

Someone experiencing fatigue, shortness of breath and muscle ache may have difficulties with many PIP point scoring activities, such as washing and bathing, dressing and undressing and moving around.

Difficulty concentrating may well affect activities including preparing food, reading, making budgeting decisions and planning and following journeys.

The fact that 178,000 people are still experiencing symptoms after a year suggests that it is now clear that Long-Covid is a condition which will often meet the 3 month qualifying period and the 9 month prospective test for PIP.

According to a recent article in Nature, scientists do not yet know whether vaccines prevent Long-Covid and whether vaccinations for people who already have the condition will make it better or worse.

The article also suggested that there is no link between how severe the initial episode of Covid is and the severity of Long-Covid, in those who go on to develop the condition.

It also highlights the similarities between Long-Covid and ME/CFS, which is often linked to viral infections and is the basis of many, often bitterly contested, PIP claims.

Scientists cited by Nature found an even wider range of symptoms than the ONS study, including physical impairments, mental-health difficulties such as anxiety, and cognitive impairments in areas such as memory and language.

All this means that the current rapid increase in infection rates could lead to many thousands more people suffering a debilitating and long-term condition that could give rise to entitlement to benefits.

It will not just be PIP that people with these symptoms may be eligible for, income replacement benefits such as employment and support allowance and universal credit are also relevant.

But it is PIP, which is not means-tested, that will be concerning the DWP the most.

According to the most recent PIP statistics, released last month and covering the quarter to April 2021, new PIP claims have reached an all-time record high.

Reports of changes of circumstances are also at a record high. It is likely that Long-Covid will exacerbate some symptoms for people who already have another health condition, leading them to report a change of circumstances.

This rise is unlikely to simply be the result of things getting back to normal as the country opens up again. PIP claims were already running 5% higher than the previous year by January of this year and changes of circumstances were 18% higher.

So, the continued rise is likely to be due to other factors. The lack of availability of many planned and routine treatments, meaning that people’s conditions worsen, is probably one.

But the appearance of Long-Covid and people’s realisation that they may not get well for a very long time, if at all, is undoubtedly an important part of the picture.

And with infection rates on the rise again, the number of people who develop Long-Covid is likely to be rapidly increasing too.

Expect to see a new PIP battleground opening up if, as seems quite possible, the DWP try to refuse claims on the grounds that the condition does not meet the 9 months prospective test, in spite of all the evidence that for hundreds of people it will.

Tokyo Paralympics: Most Of Channel 4’s TV Hosts Will Be Disabled

July 6, 2021

More than 70% of Channel 4’s presenting team for the Paralympic Games will be disabled, the broadcaster has pledged.

Presenters for the event, which takes place in Tokyo in August and September, will include TV host and former basketball player Ade Adepitan.

He’ll be joined by disability advocate Sophie Morgan, ex-rugby player Ed Jackson and Strictly star JJ Chalmers.

Channel 4 said it would be the largest number of disabled presenters ever seen on UK TV.

Director of programmes Ian Katz said the broadcaster had a long track record of “bringing a global audience to the Paralympic Games and for shifting perceptions of disabled people”.

Non-disabled presenters Lee McKenzie and Vick Hope will also report from Japan, while Clare Balding will present live coverage from a studio in Leeds, and Steph McGovern will head a daily breakfast show alongside Paralympic cyclist and former Royal Marine Arthur Williams.

Elsewhere, Adam Hills, Alex Brooker and Josh Widdicombe will host The Last Leg daily and will be joined by comedian Rosie Jones, who has cerebral palsy, reporting from Tokyo. The coverage will also feature pundits including 11-time Paralympic gold medal winner Dame Tanni Grey-Thompson.

Audible Review – American Football Film Makes A Noise About Deaf Culture

July 5, 2021

Ten years ago, director Matt Ogens was shooting an ad campaign involving high school football teams. One of them was from Maryland School for the Deaf. Ogens was already aware of the school – he grew up within 30 miles of the place and had had a deaf best friend since he was eight years old – and he stayed in touch in his directorial capacity for the next decade, feeling that “there was a bigger story to tell”.

The result was shot last year, pre-pandemic, and arrives on Netflix in the form of Audible, a 38-minute documentary about the team’s final semester. It starts with the brutal loss of a game that breaks a 16-season winning streak, taking in the ordinary trials and tribulations of adolescence, plus some of the particular challenges of preparing to step out of the deaf community to face adult life in the hearing world. The soundtrack fades in and out, blurring and unblurring to reflect what the players themselves hear of it, and keeps in all the advertent and inadvertent noises the students make as they communicate in American Sign Language (ASL). It is also set against the backdrop of grief for teammate Teddy Webster, lost to suicide. It finishes with the homecoming game, where the team meet with either triumph or disaster – I shall not spoil the ending for you.Advertisementhttps://7cfcc059735d1f81710abd5788920612.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

It is a lot of ground to cover in under 40 minutes, and there are many points at which you wonder whether Ogens might have been better off waiting another few years in order to make a longer, weightier film that had time to give all aspects of the team’s complicated story their due. At its current length, it skims so lightly over so much that it feels more like an extended commercial than a piece of factual programming – especially given its numerous glossy sequences out on the field, following the games that bookend the show and the training sessions at dusk and dawn, interspersed with moody pre- and post-match locker-room moments, and jazzily shot pep talks. Such elements are pleasant enough, but unspecific and unworthy of the amount of time they take up.

However, viewed as a small-scale, aurally immersive introduction to a world largely unknown to the general public , it works beautifully. The nuanced physicality of ASL – generally flattened into mere hand gestures when we see it in film and television dramas – is conveyed, evoking much more strongly and accurately than usual the sense of deaf culture as one that stands alongside any other, rather than as the subsection of the “disabled community” it is often thought to be. (Please let us reconvene to discuss the term “disabled community” at a later date. A mere TV review cannot, alas, parse everything as fully as I would like.)

Audible centres largely around one player, Amaree McKenstry-Hall, who lost his hearing as a toddler after contracting meningitis. “I can’t hear anything,” he explains to camera in his bedroom. “Cheering, fans yelling … I feel their vibrations. I feel their footsteps when they run – the boom, boom, boom.” He is the only deaf member of his family, and has a cochlear implant that he only uses to listen to music, though he doesn’t hear the lyrics. His father left the family at the same time as Amaree lost his hearing. His father says now that he was terrified. “I walked out … immaturely, very foolishly, and later regretted it.” Now he has found God, and is working hard to rebuild his relationship with Amaree. The scenes where they cultivate the tender new shoots of affection between them are some of the most touching in the film.

You do long, however, to hear more about what life is like growing up in a family not fluent in your language, and to have some wider context regarding the impact of deprivation on individuals and families already not competing on – if you’ll pardon the pun – a level playing field. The film could also have more closely considered the heightened meaning sport has for deaf students. Above all, you wish for more time to have been spent on the causes and effects (especially on his boyfriend, Jalen, who gets a sparse few scenes) of Teddy’s suicide.

Ogens has said that he hopes the film will be a springboard to bigger things, and by the end of this rather slight but moving and evocative film, you can only hope that it will be so. I look forward to it.

How A US Teen Developed An App To Help His Sister Talk

July 5, 2021

Della has a rare genetic condition called Bainbridge-Ropers Syndrome which affects her ability to speak.

Her brother, Archer, wanted to help his sister communicate – and didn’t think it was fair to rely on expensive communication apps.

Aged just 16, Archer decided to develop one himself, for free and accessible to all.

Disabled Woman Begins Legal Action Over Hampstead Ponds Fees

July 2, 2021

A woman who swims regularly in the Hampstead ponds is taking legal action against the City of London Corporation, claiming that the new charging regime discriminates against disabled people.

Christina Efthimiou, who is disabled and receives disability-related benefits, has swum at the ladies’ pond for four years. She is a member of the Kenwood Ladies’ Pond Association (KLPA), which is supporting her in seeking a judicial review against the Corporation.

Efthimiou, 59, says that access to the ponds is an essential part of managing disability for her and many others, and that the value of cold-water swimming for physical and mental health is widely recognised.

“The benefits to me are immense,” she said. “If I have to stop using the ponds for my regular exercise I don’t know what I will be able to do instead. I and many others will be priced out by the charges, which will change the ponds to a privilege for the better off.”

Mary Powell, vice-chair of the KLPA, said the ladies’ pond had historically provided a sanctuary for women and girls, including those with disabilities, victims of violence and abuse, and those from faith groups that demand modesty, but the new charging system was proving exclusionary for many people. While the legal case deals expressly with the disproportionate effects on disabled people, Powell said access had also been affected for other groups.Advertisementhttps://36990ca60df06c1790dabce0e42c7299.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

“There are limitations to the free swims offered for over-60s before 9.30am, for example, particularly for elderly members or those with fluctuating health conditions who can’t get to the ponds that early or need to be accompanied,” she said. “The times also clash with when Oyster 60+ or freedom passes can be used, which cancels out the benefit of a free swim.”

Up until 2005 it was free to swim in the Hampstead Heath bathing ponds. Despite fierce opposition from the local community, the City of London Corporation (CoLC), which has run the world-famous ponds since 1989, implemented a charging regime, though this was self-policed, so people who couldn’t afford to pay still had access.

After a review in January last year, the CoLC introduced mandatory fees for the first time in the ponds’ history. The KLPA said this was in spite of strong support from the swimming associations for adopting a system where income could be increased without excluding anyone unable to pay.

But the Corporation opted for increased mandatory charges, which included a doubling of prices for adults and a 140% rise for concessions, which it insists was necessary to sustainably fund upkeep of the ponds.

In February 2021, the CoLC increased rates again. While non-concessionary rates were increased in line with inflation at 1.3%, the cost of a six-month pass for those eligible for concessions, including disabled people on benefits, was bumped by 21.5% to £40.11 and a 12-month pass by 15.1% to £75.97.

The CoLC’s refusal to allow for payment in instalments and make it easier to pay cash were further barriers for disadvantaged swimmers, Powell said.

In the legal case, Efthimiou argues that the new charging regime, which took effect on 1 April, disproportionately affects people with disabilities and that the City of London has breached its duty to make reasonable adjustments; has discriminated against her and other disabled people contrary to section 19 of the Equality Act; and has breached its duties under article 14 of the European convention on human rights read with article 8.

She’s asking the court to repeal the Corporation’s decision to implement the increased charges on the grounds that the regime amounts to unlawful discrimination in respect of disabled people.

Kate Egerton, a solicitor at the law firm Leigh Day, said: “In our view, the City of London has failed to engage with the impact its charging regime is having on disabled swimmers and to comply with its equality duties to disabled swimmers who rely on the ponds to manage their health.

“The current charging regime demonstrates a total lack of understanding of the financial position of those who survive on benefits and the significant physical and psychological benefits to disabled people of swimming at the ponds.”

A spokesperson for the CoLC said: “The Hampstead Heath charity offers a 40% swimming discount to disabled people, and a season ticket at the bathing ponds brings the cost of swimming down to as little as £1.46 per week.

“We subsidised swimming at the bathing ponds by nearly £600,000 in 2020/21 and we offer a comprehensive support scheme, including free morning swims for under-16s and over-60s. Concessions apply to disabled people and those in receipt of state benefits.

“Swimming charges are reinvested to ensure that affordable, safe and sustainable access to outdoor swimming is available to as many people as possible for generations to come.”

Disabled People Forgotten During Covid, BBC Research Reveals

July 1, 2021

Thousands of deaf and disabled people across the UK have told the BBC of the devastating impact the pandemic has had on their lives.

Most said their disability had worsened and more than 2,400 said routine, often vital, medical appointments had been cancelled.

More than 3,300 people took part in the research carried out by the BBC.

Disability charity Scope said the findings confirmed that disabled people’s needs “had been forgotten”.

The findings paint, for the first time, a comprehensive picture of a hidden fallout of Covid-19.

Nearly 100 more disabled people also contacted the BBC wanting to share their stories. Many of them had experienced huge physical and mental decline since March 2020. Impact of Covid on disabled people

  • 2,604 said mental health had got worse
  • 2,427disability had deteriorated
  • 683had seen all of their appointments cancelled/unable to attend
  • 241had not left house at all

BBC research: 3,351 disabled people questioned

There were young people with autism who had attempted suicide because they could no longer cope with drastic changes, others were isolated and alone, their support networks gone or hours of care cut.

Access to healthcare was a huge issue – one woman was told not to go to hospital if she contracted Covid as this might put her more at risk.

A family told how care had been almost stopped for their disabled daughter, while her father, who had had Covid, was offered a range of treatments.

Fourteen-year-old Josselin has a rare genetic condition, which means she has hearing loss, a vision impairment, can’t walk or talk and is fed through a tube.

Her family, who live in Wiltshire, have a vital network of services they rely on to keep her well – physiotherapy, speech and language therapy, occupational therapy, respite care. All of that stopped in March 2020.

“Josselin really struggled. She just shutdown,” says her mother Karen Tilley. “I never thought [she] would suffer from depression like that.

“After about a month she started pulling her hair out and picking at her skin, she had cuts all over her arms.”

‘Lack of support’

Josselin was prescribed anti-depressants and anti-psychotic medication. She was also given prescription drugs like diazepam to cope with the pain she was having in her hips and her spine because of a lack of physiotherapy.

“Suddenly she was put on all these new medications. There was just no support for us at all – it was horrendous.”

At the beginning of this year, Josselin’s dad Lee, 43, caught Covid-19. He spent five weeks on a ventilator in intensive care.

Lee is back home making small and slow steps to, the family hope, a full recovery. But the difference between the support he is offered and the treatment his daughter receives is stark.

His calendar is full of medical appointments. He has an occupational therapist, a physiotherapist, and he has been sent equipment to help him regain his mobility.

But for Josselin, her cochlear implant, which needs retuning every few months, has not been checked for nearly two years. Her last eye test was over the phone, she’s not had any face-to-face physiotherapy since March 2020, and her walking frame no longer fits.

“It feels like it’s because she’s disabled so it’s not worth bothering with,” says Karen. “She’s not ever going to walk and talk so they just don’t bother with her.”

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Analysis box by Nikki Fox, disability correspondent

All the people we have spent time with over the past few months have shared their own, heart-breaking stories. Considering everything they have had thrown at them this past year, they have managed to get through it the best they can, almost entirely on their own.

But what really hit me is that none of them kept a “who had it worse during Covid” scorecard.

Yes, they all pretty much described themselves in one way or another as “the forgotten ones”, but they were all incredibly measured and understanding of the fact that the pandemic has touched us all in very different ways, disabled or not.

Freelance journalist Raya Al Jadir, 43, uses a ventilator. She was told by her specialist doctors that if she caught Covid-19, she should not go to hospital because the level of care she would need could not be guaranteed.

She was also warned that it was unlikely that she would be considered for life support.

“It made me feel alone and isolated. If I did end up in hospital and I was really sick – who was going to fight for me?”

Raya was one of the hundreds of disabled people who told the BBC that they would avoid going to hospital during the pandemic.

From March 2020 to May 2021, Raya did not leave her house for fear of catching Covid.

Shielding may have officially ended but there are still many disabled people living an isolated existence. Nearly 2,000 told the BBC that they had left their house on only a few occasions since the start of the pandemic, with almost 250 saying they had not ventured outside since March 2020.

At the end of May, Raya finally left her London flat.

“Breathing the air, seeing the clouds made me feel part of the world again.

“As a disabled person, I feel like the weakest link in society. And now, because of Covid-19, no-one knows what to do with the weakest link.

“I don’t think my life will ever return to what it was before March 2020.”

‘Never happen again’

One of the biggest disability charities in the UK, Scope, has said the BBC’s findings “confirm the government’s failure to provide support for disabled people throughout the pandemic.”

“Millions spent months shielding, having to battle for basic support like healthcare, supermarket deliveries, financial support and social care,” said James Taylor, executive director at disability equality charity Scope. “Horrifying reports of DNRs [do-not-resuscitate orders] being placed on people without their consent left many fearing they’d not get treatment if they caught the virus.

The government “must take bold action now to put disabled people at the heart of the recovery, and end the growing inequality”.

The Department of Health and Social Care said it recognised the pandemic has been “incredibly difficult” for disabled people.

“Among other support, we have invested £2.4m to help charities offer vital projects to improve disabled people’s physical and mental wellbeing.

“The government has provided a range of help for disabled people throughout this period and through our forthcoming National Disability Strategy we are going to go even further in addressing issues that disabled people say affect them the most.”

Information and support: If you or someone you know needs support for issues about emotional distress, these organisations may be able to help.

Hollyoaks Star Amy Conachan On Courtney Campbell’s Exit And Future Career Plans

June 30, 2021

 

Hollyoaks spoilers follow from Tuesday’s E4 first look episode (June 29).

Hollyoaks star Amy Conachan has left the soap after a five-year stint as Courtney Campbell.

Fans saw Courtney’s final scenes in Tuesday’s E4 episode, as she departed the village to accept her dream job as a headteacher in a school in Scotland.

Digital Spy recently caught up with Amy for an exclusive chat about her departure from Hollyoaks.

How are you feeling now that your time on Hollyoaks has come to an end?

“It’s such a strange one, because everything gradually calmed down. When I was filming, I’d think: ‘Okay, I’ve got two weeks left. I’ve got one week left. I’ve got two days left…’ Then it was my last day, so it gradually just went away.

“Then when you’re out of it, you’re still on screen, so it comes in stages. Coming to the end of filming, I was a bit of a woman on the edge – so emotional about it!

“I’ve been fine since then because I’m on screen, but now I feel a bit emotional again. I was catching up on episodes last night and thought: ‘My God, this is it. She’s only going to be on a couple more episodes and that’s it.’

“It’s strange when it’s such a big part of your life for five years and then it’s just gone. It’s a funny one to get your head around.”

Was it your choice to leave?

“I suppose it was my choice to leave, but it was more that I wanted to go out on a high. I’d been on the show for five years and it felt like a nice, round number. Advertisement – Continue Reading Below

“I hadn’t done a whole lot before I was on Hollyoaks. I was only at drama school for a year and there’s loads of things that I want to do. The training that I got at Hollyoaks was probably the best job that I could have done so early in my career.

“Even though it was me that said it was maybe the right time to do something else, it was still very much a hard decision for me because Hollyoaks was just the best job ever.

“It’s a one-of-a-kind opportunity when you’re an actor, to go to the same place every day, see the same people and play the same character. But it just felt like the right time for me to leave… although I’ll let you know in about six weeks’ time if I still feel the same way!”

How long has Courtney’s exit been in the pipeline for? Was it something you spoke to Bryan Kirkwood about before he left as producer last year?

“It has been talked about for a while. I’d discussed it with Bryan and we wanted it to be a nice ending for Courtney, but the exact details of how that would happen all came at a later date.

“Obviously a lot has happened in the past year. When I was first thinking about this, there was no pandemic! So things did change along the way, but it’s definitely been in the pipeline for a while.”

Did you have any input into Courtney’s exit storyline or did you leave it to the writers?

“I definitely left it to them, but I was quite adamant that I didn’t want Courtney to be running away from anything. When I first got the scripts through for the storyline with Courtney and Sid, I didn’t really want her to be leaving because something bad had happened with them.

“That wasn’t only because I didn’t want Courtney to leave on a bad note, but I also really loved that relationship between Courtney and Sid and I didn’t want them to end things on a sour note either. I just wanted Courtney to leave the village to further herself, rather than running away from anything. Advertisement – Continue Reading Below

“Also, I really wanted the door to be left open. I didn’t want Courtney to die! It’s such a nice thing to have that door open and maybe one day she might come back.”

We saw Sid develop inappropriate feelings for Courtney. Was that storyline a challenge?

“When you do a storyline like that, it’s hard to know where to pitch it. I had a lot of personal feelings around it, not only over the character but also my relationship with Billy [Price, who plays Sid] as two actors and two friends.

“Sometimes the writing can go in a different direction than you want it to as the actor, just because you want everything to be lovely and to go to plan, like I’m sure the fans do. I saw a lot of comments saying: ‘No, don’t do it!’

“But I think once me and Billy realised where the storyline was going, we relaxed into it a bit more. At first I thought: ‘Oh my God, Courtney, don’t do it. Stick to your true self and be that sensible person that you’ve always been.’

“It was actually so lovely that so many of my final scenes were with Billy. It was that tightrope of the teacher wanting to be there for someone but not too much, because she knew where it could go.

“It was a challenge for me to know where to place that, but I think we got there in the end and I enjoyed playing that.”

What was your final day on set like? Had the rules changed by that point, allowing you to spend some time with the cast?

“Things had changed a little bit on the outside. At work we still had all of our restrictions, which was a wee bit of a shame, because it meant that my entire final year on the show was restricted by COVID protocols. But outside in the world, I was able to see friends here and there in small groups.

“That was so nice, because there are amazing people at Hollyoaks who are going to be my friends for the rest of my life. To just end it and go back to Glasgow without seeing anybody would have been such a shame.”

Who do you see yourself keeping in touch with?

“Definitely Jessamy [Stoddart, who plays Liberty]. She’ll be one of my best friends forever. We still talk most days, so I’m not going anywhere and she’s stuck with me, unfortunately!

“Nadine [Mulkerrin, who plays Cleo] and Rory [Douglas-Speed, who plays Joel] are my go-to when I need somewhere to stay in Liverpool, they’re the best.

“I’m also still very much in touch with Luke [Jerdy, who played Jesse] and Daisy [Wood-Davis, who played Kim]. They’re my really good friends.”

What are your future plans for your career?

“I just hope that it carries on with the trajectory that it’s on. I’ve been so lucky. Even before I’d left drama school, I’d worked in theatre in Scotland and done some amazing projects.

“I look at my friends who I went to drama school with and it’s not necessarily worked out as well for them, just because that’s the industry. So I realise how lucky I am after doing this show for five years.

“I do have a few projects that I’ve done already and that are coming up, so it seems like it’s all going to be okay. I’m a hard worker and very passionate about it, so I’m ready to do the work.”

Are you proud of what Courtney’s role in Hollyoaks meant for disability representation? The character never seemed to be defined by her disability.

“I think that is just incredible. Hats off to Hollyoaks for doing that. Coming into the show, I was adamant that this was the type of character I wanted to play.

“I was at the point where I’d played a lot of parts where they’d been looking for someone in a wheelchair, or wanted to tell a story with someone about them being in a wheelchair.

“I didn’t really want to do that anymore because I had seen that. I think we’ve all seen that over and over again. It’s a bit boring and not representative of what it’s like to live with a disability.

“I wasn’t faced with any argument. Hollyoaks were on board with that and it was never in their mind that they wanted to tell a story about a girl in a wheelchair. Courtney just happened to be in a wheelchair, but she was going to do the same fun, soapy stuff as everybody else.

“Other productions, writers and directors could learn from Hollyoaks in that manner. It’s been a privilege for me to be able to champion that.”

Were you sad that Leela wasn’t around for Courtney’s exit?

“Yeah, when Kirsty left I already knew that I was going. She said to me: ‘Oh my God, this is the last scene that we’ll ever do together.’ It was so far in advance that it didn’t feel real.

“Kirsty messaged me when I finished. I thought it was such a shame because Leela was a massive part of why Courtney was there in the first place, but obviously there was an incredible reason why Kirsty wasn’t there and I’m so happy for her.

“Courtney’s final scenes were with Ste and Peri at the Lomaxes’, so it has still come full circle. Leela was very much there in spirit.”

What were your Hollyoaks highlights?

“It has to be when we went to Spain. It was the most fun week ever and the storyline was just incredible. I never thought I’d do a storyline where I was smuggling drugs in my wheelchair and trying to get them through an international border! Getting to go to Spain to do it was the cherry on the cake.”

How do you hope fans remember Courtney?

“I want them to remember Courtney as someone who added a lot to the show and I hope they remember some of the storylines in years to come.

“Courtney was a fierce, feisty Scottish girl who came in and ruffled a few feathers and also supported some of their favourite characters.”

Hollyoaks airs weeknights at 6.30pm on Channel 4, with first look screenings at 7pm on E4.

 

UK Government partners with disability charity to set standards for electric vehicle chargepoints

June 30, 2021

A press release:

  • Standards will provide industry with guidance on how to make individual chargepoints more accessible by summer 2022
  • Guidance will consider aspects such as kerb height, adequate space between bollards and chargepoints being of a height suitable for wheelchair users
  • Partnership with British Standards Institute (BSI) and Motability will see chargepoints that are accessible for all as we accelerate towards a zero-emission future

The UK is accelerating towards a more inclusive, reliable electric vehicle (EV) charging network, as the Government and charity sector come together to set accessibility standards, Transport Minister Rachel Maclean has announced today (30 June).

In partnership with national disability charity Motability, the Department for Transport has commissioned the British Standards Institute (BSI) to develop accessibility standards for EV chargepoints across the country. These standards will provide industry with guidance and drivers with a new clear definition of ‘fully accessible’, ‘partially accessible’ and ‘not accessible’ public EV chargepoints.

The design of public chargepoints is already carefully considered by operators, however consistent standards are crucial for drivers to easily identify which chargepoints are suitable for their needs. This could range from adequate space between bollards, charging units being of a height suitable for wheelchair users, size of the parking bay and the kerb height.

Transport Minister Rachel Maclean said:

“With sales of EVs increasing and the Government’s net zero ambitions accelerating, I want to make it as easy as possible for EV drivers to charge up their vehicles at public chargepoints right across the UK, regardless of their mobility.

“We are taking action to provide accessibility guidance to both operators and drivers, to make sure that the transition to zero-emission driving will benefit everyone in society as we build back better.”

Minister for Disabled People Justin Tomlinson said:

“As we Build Back Greener this Government is ensuring disabled people are at the heart of our plans.

“As electric vehicles become more popular it is imperative that disabled people have the same opportunities to access them as everyone else. The new accessibility standards for chargepoints will help make this a reality.”

The Office for Zero Emission Vehicles (OZEV), Motability and BSI will be working with industry stakeholders including EV chargepoint operators, disability charities and innovators to ensure that the consumer can find the right chargepoints for their needs.

Barry Le Grys MBE, Chief Executive Officer at Motability, said:

“There is a risk that disabled people are left behind as the UK’s transition to electric vehicles approaches, and Motability wants to ensure that this does not happen. We welcome the interest from Government in our research on electric vehicle charging and accessibility and we are excited about our partnership with the Office of Zero Emissions Vehicles (OZEV) to further this work. We look forward to working together to create world-leading accessibility standards and to support the UK’s commitment to achieving zero emissions. Motability looks forward to a future where electric vehicle charging is inclusive for all.”

Motability is also working with Designability, a charity which creates products to enable disabled people to live with greater independence, to engage with disabled drivers and identify their requirements for accessible charging.

Catharine Brown, Chief Executive at Designability, said: 

“Accessible electric vehicle charging is an exciting area of innovation for government, industry, and the charity sector. Designability welcomes this important drive towards standards that will make sure the needs of disabled people are taken into account as this new technology becomes mainstream. We are delighted to be working with Motability to create cutting-edge design solutions. Our expertise in working with disabled people makes us perfectly placed to find solutions to these every day challenges – which will only increase as more people want to drive electric cars. To date over 1,000 disabled drivers have volunteered to feedback to Motability and Designability on how we can make electric vehicle charging accessible for all.”

Matthew Campbell-Hill, a former Team GB Wheelchair Athlete and member of the Electric Vehicle Association (EVA) England, said:

“As an EV owner and motor vehicle enthusiast who knows how transformative inclusive infrastructure can be, I’m excited to learn of this cross-sector partnership between charity and government. I’ve experienced first-hand just how challenging it can be to use a chargepoint that hasn’t been built with disabled people in mind, and this work will ensure electric vehicle charging is accessible for all. I can’t wait to see innovation and change in this space.”

To ensure all interested stakeholders have the opportunity to come together and inform the standards, Motability will be holding a series of workshops on accessibility and electric vehicle charging in August. If you are a charity working with disabled people, or people with long-term health conditions and would like to know more about participating, contact innovation@motability.co.uk.

Campaigners Fight To Save Human Rights Act

June 29, 2021

If anyone had told me that my family would ever need disability benefits, legal aid or the Human Rights Act, I wouldn’t have believed them. I am sharing my story because my fear is that when the next family comes to need these same things, they will not be there.

Cameron was the youngest of our four wonderful children. He was born in 2007, and it quickly became clear he was very ill. He had to be rushed to Alder Hey children’s hospital for emergency surgery when he was only three days old. He was diagnosed with cystic fibrosis, then at 18 months we learned that he had Duchenne muscular dystrophy too. I remember the consultant telling us with tears in his eyes that Duchenne was a severely life-limiting condition and my wife and I replying in unison that it would not limit Cameron’s life.

You see, we had already begged him to fight when he was three days old and promised him that if he could not live long, then we would do all we could to help him live fast. He took us at our word, and lived a life of love and laughter, pedal to the metal and without fear, for five and a quarter magical years, despite all that was thrown at him.

This coming Saturday would have been his 14th birthday, a day we celebrate his life and the happiness of his childhood despite extraordinary challenges. Two years after Cameron’s death, we won a landmark appeal that allowed us, and other parents in our position, to continue claiming disability living allowance while caring for Cameron in hospital – after those benefits were taken away from us. This year is also one that brings me a great deal of trepidation about the direction of travel for justice, rights and protections in this country.I am saddened that the government now appears to be seeking to further reduce protections for all of us by watering down the Human Rights Act – the legislation on which we based our case – via the current review being conducted by a former judge. The Human Rights Act is not just one of the ways for UK citizens to challenge government decisions we deem to be unfair: it is really the only way.That should scare everyone in this country. Of course, I hope no one else finds themselves in the position my family and I found ourselves in, but it could be any one of us.
The interplay between Cameron’s conditions and a blood-clotting disorder they caused was devastating, and my wife and I had to give up work to care for him during long, repeated stays in hospital, through surgery after surgery, struggling to get him home again with his sister and brothers.Advertisement

We did not claim any benefits for Cameron until we had spent all of our savings and sold every last asset. Then, we reluctantly accepted that we had reached the end of the line and had to ask the state for help. We count ourselves lucky to this day that we live in a country that allowed us to effectively retire during Cameron’s life to do our best for him and his siblings. A country where generations of us selflessly pay in to help others, without thought for what and when we may ever get back.

In July 2010 Cameron was again rushed to Alder Hey with an intestinal blockage and this time he lost all but about 90cm of his intestines, well below the “magic metre” needed for normal nutrition. From that day he had to be fed intravenously and get used to having twin stomas and a stoma bag, a central line and gastric tube. In total, we spent 62 weeks in Alder Hey, still far less than many other families, but our costs effectively doubled as we tried to maintain our home and a home-away-from-home for Cam in hospital.

It came as a very unpleasant shock to have Cam’s benefits stopped after three months on the basis that “he had had long enough to get used to being in hospital and the state could no longer afford to pay for the same thing twice”. This, the “84-day rule”, had been introduced to the disability living allowance regulations in 1991. This was an unimaginable blow. We were being cut off just when we needed support most, and it was so obviously wrong. Despite everything else we had going on, my wife and I decided we had to fight the decision. Not only for ourselves, but for other families we had come to know intimately; families who, like us, spent long days, nights, weeks and months caring for their child in hospital.

Thanks to legal aid and the Human Rights Act we were finally able, after four and a half long years, to explain to the supreme court why the government had been wrong: that there was no overlapping provision between disability living allowance and NHS care; that the NHS has never provided for “all children’s disability needs in hospital” and indeed that parents faced being reported for neglect if they did not accompany their children in hospital at all times without exceptional reasons, and that this had all been true since the Platt report of 1959.

In 2012 the government passed the Legal Aid, Sentencing and Punishment of Offenders Act that made it impossible for anyone to bring a case like Cam’s again (the public interest test for legal aid is effectively insurmountable where the Human Rights Act is engaged), as well as the current assault on the act that is under way. There’s every reason for all of us to want to make sure the Human Rights Act doesn’t lose any of its power – and every reason to worry about powerful people who want it to.

 

Ryan Zaman

June 28, 2021

When he was five years old, Ryan Zaman walked in a fashion show at his primary school. The catwalk was made from gym mats laid out in a T, and the front row was populated not by Wintours and Kardashians but by rapt parents on tiny chairs. Zaman’s mum shot a video and it should be issued with an “extreme cuteness” advisory. At the end, a teacher with a microphone buttonholes Zaman and asks, “Are you famous?”

“Yeah,” he replies.

The audience laughs. “I thought you were,” says the teacher. “Everybody went ‘wit-woo’ when you came out. Do you like modelling?”

“Yeah,” Zaman says, chewing on his thumb nervily, but also clearly not totally unhappy with being the centre of attention.

The fact that Zaman, now 25, is a star model, appearing in postbox-red lipstick and a gold laurel wreath on the front of the first issue of Perfect magazine – one of the other covers is Kate Moss – could be seen as predestined then. But the truth is that Zaman never really believed he would make it in fashion, and he still pinches himself that it seems to be happening for him. He was too short: 5ft 7in. He wasn’t ripped. His legs were skinny. He didn’t consider himself especially attractive. Until January this year, Zaman still worked nine-to-five in the civil service, writing briefs for ministers on international trade policy.

But more than anything, he didn’t see anyone like him becoming a model. Zaman has cerebral palsy: he was born three months premature and his first weeks of life were spent hooked up to an incubator. Doctors weren’t sure if he would ever walk and, when he was 15, both of his knees were broken in surgery in order to relieve the tension in his hamstrings. Moreover, the fashion world, with its strict edicts on human beauty, has not exactly been progressive when it comes to disability. Despite making up 22% of the UK population, disabled people have rarely appeared in fashion magazines or in advertising campaigns. Clothes are not designed with them in mind. Zaman wryly notes that there are more clothing ranges for dogs than for disabled people.

 

Now that he has got his foot in the door, he wants to change that. Not so long ago, models were enigmatic: they were seen but rarely heard. Zaman feels he has a responsibility to make it easier for those who follow him. Alongside modelling, he hosts a podcast, The Right Foot Forward, where he speaks to a guest about disability and inclusion in the fashion industry. An early conversation was with Jillian Mercado, who has muscular dystrophy and was one of the first people with a physical disability to be the face of a global fashion campaign, when Diesel selected her in 2014. The Right Foot Forward is also a website, and Zaman has begun producing shoots with disabled people in front of and behind the camera.

Zaman is in many ways an unlikely activist. Until very recently – even the middle of last year – he was deeply uncomfortable talking about his disability. When he first met his current boyfriend a couple of years ago, he didn’t tell him about his condition for a month (his boyfriend had a friend with cerebral palsy, so knew already). But Zaman has been quick to find a powerful and inspiring voice.

“The word ‘diversity’ gets thrown around quite a lot to the point where it’s now meaningless,” says Zaman. “I see it as quite a face-value word, or a face-value ideology. Like, ‘Let’s throw a black or brown person in there, let’s throw an Asian person, let’s throw a person in a wheelchair in there and then we’re diverse.’ Which is quite tokenistic and we all know how tokenism is problematic.

“So part of what I’m doing with the podcast and the website is building my own networks to also try to help other people with the connections I have,” he goes on. “And that’s where it moves from being a diverse thing to an inclusion thing.”

I meet Zaman in Highbury Fields, not far from where he lives in north London, and we walk round the neighbourhood for an hour and a half, as he explains how someone jumps from a desk job on Whitehall to the covers of edgy magazines. It’s true, he’s not that tall, and he’s dressed inconspicuously in a blue T-shirt and skater shoes, but it’s not hard to see why he’s in demand as a model. He has full lips and ash-blonde hair; his blue eyes are pale and soulful, and when he smiles it’s so joyous, like getting an injection of vitamin D and serotonin. Fashion editors have told Zaman they like him because he’s “versatile”, though he’s not totally sure what that means.

He grew up in Stockport, just down from Manchester. His parents only knew he had cerebral palsy when he was three, after they took him to doctors because he was struggling to walk. Their marriage broke up when Zaman was 10 and, soon after, his mum was diagnosed with breast cancer. He became her primary carer, and only when she had the all-clear did he have the surgery he needed on his hamstrings. Then it was straight into learning to walk again – twice, first with locked-in splints, then without – and GCSEs. “I didn’t have time to think about being a dickhead, really,” says Zaman. “So then I became an idiot in my early 20s and I think a lot of that built-up frustration came out when I went to uni.”

His degree at Leicester University was in American studies, and Zaman also had his first experience of modelling. A friend roped him into a shoot with his cousin, who was a photographer. Later, they went to Romania to do a fashion story for 10 Magazine. “I got to wear some nice clothes and get some dodgy haircuts,” Zaman recalls. “Me and my mate were just like, ‘Oh, this is a bit of a jolly during the Easter holidays before we do our exams.’”

Zaman thought no more about fashion until the first lockdown. His work for the civil service continued remotely, but his partner, photographer Conor Clinch, found that the jobs dried up instantly. The weather was unseasonably warm and, desperate for an escape from their one-bed flat, Clinch convinced Zaman to go to a local park to take some pictures. They borrowed some clothes from a friend who works for Hugo Boss and, with some clever post-production, Clinch managed to make “a grotty pond in a park” look like the desert, complete with cacti. The fashion magazine Wonderland liked the photographs and ran them.

Then last summer, Zaman and Clinch moved to a new flat and – in a not very high-fashion detail – they had to vacate it for two weeks when they found the kitchen had damp. Deciding they might as well go away, they picked Italy, and Clinch pitched the idea of a short film to Love, the influential fashion magazine. At first, Clinch imagined a three-minute short, showing Zaman driving around Puglia in a 1980 Maserati, but it quickly became something more personal. The final cut was just over nine minutes, with a voiceover from Zaman about his experiences with cerebral palsy, intercut with home videos from his youth, such as the fashion show mentioned above and heartbreaking footage of him as a baby on a ventilator in the hospital, his tiny chest heaving violently up and down, desperate for air.

Clinch’s film is beautiful and is an ideal showcase for Zaman as a model and as a compelling personality. It also led to an introduction to Katie Grand, the stylist and editor who had not long left Love, which she founded in 2009, to start new venture Perfect. As a tastemaker to have in your corner, Grand is as good as it gets and she has fully embraced Zaman as a model and advocate, both in the new magazine and on social media.

“Ryan, it goes without saying, is an exceptional human,” says Grand. “He’s smart, articulate, thoughtful and beautiful. He has a way of discussing his cerebral palsy that puts able-bodied people at ease: there is no stigma or discomfort attached in the discussion. The fact that it even becomes an open and easy discussion is seismic.”

It’s frequently hilarious to hear Zaman talk about his experiences as a model. When Grand asked him to shoot the Perfect cover, he said he would, but only after 5pm, when his civil service job finished for the day. On the call sheet, he saw “KM” and had to ask Clinch what it stood for: “Whoa, like, Kate Moss, OK, fine,” says Zaman. “I was sat in the [makeup] chair next to her and I think I was reeling for about a week. I was like, ‘What just happened?’ Katie likes to introduce people and she finds it funny to make people starstruck. Then it’s all just gone from there.”

 

Grand explains her rationale slightly differently. “The first time I worked with Ryan I felt we hadn’t got him right,” she says. “We were shooting Kate Moss and Gwendoline Christie on an additional day for the same story so I asked Ryan to come back. It was a logistical call but I suppose in the back of my mind I knew the combination of Kate and Gwen would be loud and fun and to have Ryan in the mix created a very special group of people.”

The history of disability in fashion is brief and not that edifying. In the mid-1950s Levi’s made a pair of jeans, from stretch denim and with full-length zippers in the side seams, designed for disabled people. In 1997, Alexander McQueen put out a call to recruit disabled people to wear his designs, which led to “Access-Able”, a 14-page feature shot by Nick Knight in the style magazine Dazed & Confused. Then double-amputee Aimee Mullins, an American athlete, opened McQueen’s spring/summer 1999 runway show in an extraordinary pair of carved wooden prosthetic boots. In recent times, Tommy Hilfiger and Nike, whose Go FlyEase trainers can be put on hands-free, have both dabbled in “adaptive fashion”.

Giles Duley, who was a fashion photographer before becoming a triple amputee while embedded with the US army in Afghanistan in 2011, believes progress is being made, but slowly. “The issue has always been that there’s a sense of it being a novelty at times,” he says. “Whether it be Alexander McQueen wanting an amputee or Nick Knight doing something – which obviously is progress, and it’s good that that’s represented – it’s still always been they wanted an amputee or they wanted somebody with a disability in that image, as opposed to, ‘We want a model that looks great. We picked this guy and oh, it happens that he has a disability.’ That’s a subtle difference for me.”

For Duley, Zaman is indicative of a shift in fashion where we are less interested now in models who are untouchable; instead, we want characters with personality, to whom we can relate. “Ryan’s obviously a really good-looking guy, but he feels very approachable,” says Duley. “So when you see him in his photographs, it feels like somebody you could know: he’d be your really good-looking mate, as opposed to being this David Gandy-type, perfect model that you can’t imagine even meeting. Ryan represents what is exciting about modelling at the moment, which is that the people are cool, but they also have their own style. They have a sense of who they are and that comes across in the pictures.”

Zaman agrees with Duley: in the past, models have sometimes felt “disposable” but that’s changing. “Hopefully, a lot of people aren’t looking for just a model any more,” he says. “They want people to say things, which I think is great.” As for how long that will last, he’s not sure, but right now he’s having a blast. Zaman was especially pleased to be booked for a shoot to advertise the 70th anniversary of Fred Perry. The tennis player also came from Stockport, and the images are set to be used in a new flagship store in Manchester’s Northern Quarter.

“It’s like, ‘Whoa, people from my home town are going to maybe see me in windows in a shop,” says Zaman, his eyes wide. “And also for all those kids and people who never thought I was going to amount to anything…” He laughs and coyly raises his middle finger: “I do get some satisfaction in that.”

therightfootforward.com

The Experience Of A Blind Foster Parent

June 28, 2021

For a long time I have had problems with my sight: macular degeneration meant that I had no central vision in one eye. Then, one morning in 2013, my other eye – the good one – haemorrhaged. I was told it was permanently damaged and nothing would make it better. I became officially registered as severely sight impaired or blind.

It was a big shock. Little things became so much harder, such as making a cup of tea, as I would get boiling water everywhere. People I know would stop to have a conversation in the street and I wouldn’t know who they were.

I was able to get by, but my biggest fear was that, because I was blind, the local council would stop me being a foster carer. I began fostering children 30 years ago when I was newly divorced and a single mother of three, after spotting an advertisement in the Oldham Chronicle. At the time, I was looking after friends’ children when they were at work, but I liked the idea of helping children who really needed it. I didn’t think the council would want me because I was single, but they didn’t seem to mind.Advertisementhttps://cc27bc9bdea028c579d7787a61c0a16d.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

It was an arduous application process, but less than an hour after being approved to foster, I had a phone call asking if I would take a five-week-old baby boy. He stayed with us until just before his first birthday, and since then I’ve fostered more than 150 children.

Councils and foster agencies rarely let people with disabilities become foster parents. When I got back home from the eye hospital, I thought they would say I could no longer do it and would take away the children I was looking after. The only foster carer I know who has a disability has MS, but they have a partner to help. I thought they wouldn’t want someone who was both disabled and single, and I was absolutely heartbroken at the thought. I couldn’t stop thinking about what would happen to the children. But someone from the council came to see me and, after asking a lot of questions and carrying out new risk assessments, they said they wanted me to continue.

I’ve lost count of how many children I have fostered since then. Right now, I have a three-week-old baby and a 15-year-old girl. The teenager tries to show me things on her phone, which I can’t see at all, and I have to remind her not to leave things like shoes in the middle of the floor, because when I look down I can’t see anything. Luckily, I haven’t had a bad fall at home yet, but I have tripped when out of the house. I fell over badly in the street a few weeks ago because I didn’t see the kerb. It’s easier with the baby, as long as the clothes don’t have fiddly buttons. I get my twin daughters to come to look at things like rashes to see if I need to go to the doctor.

For safety reasons, I’ve stopped taking children between two and five because they are more likely to run off in the park, and I can’t do things like cutting babies’ fingernails. Fortunately, both of my daughters are now foster carers as well, and all my children live within a 10-minute walk, so I have a lot of support. My adopted son, who is 24 and has Asperger’s, still lives with me.

The biggest problem is that I can no longer drive, so if the children have contact days with their families, they have to live close by so I can easily get there. Even without foster caring, that was the most difficult thing for me because it meant losing my independence. I know my eyes won’t get better, but I also know I will get better at dealing with it.

The hardest part of fostering hasn’t changed since I lost my sight: it’s still saying goodbye. I don’t think you can be a good foster carer if you don’t get attached. It breaks your heart when they go, but I always think, if I had kept that first one, where would all the other 150 children have gone?

I’m 63 now and don’t know when I’ll stop doing this. I don’t think there is any better job in the world. I love to see a childless couple come into my house and meet their child for the first time. Or when a parent turns things around and gets their child back. When all of a sudden a parent sees the light, it’s an unbelievable feeling for the child, but also for me.

#MyAccessiblePandemic

June 28, 2021

Whether it’s a dance class, a work meeting or a doctor’s appointment, technology has allowed many of us to do more from home during lockdown, but is this “digital connectedness” here to stay?

As office spaces started to open up and people began socialising earlier this summer, Ruby Jones thought about the elements of her life that had improved when the world slowed down.

The disability activist, who works for the University of Exeter’s Student Union, lives with Ehlers-Danlos syndrome. The connective tissue disorder sometimes requires Ruby to use a wheelchair or crutches, and can also cause fatigue.

But she found that elements of lockdown benefited her lifestyle and helped her to manage her condition.

Wondering if other people had also spotted silver linings in the months stuck at home, Ruby created the hashtag #MyAccessiblePandemic on Twitter.

She tweeted: “I’m starting a hashtag to highlight how the pandemic has improved accessibility for disabled people. I’ll start: Working from home means I am able to work a full-time job without exhausting myself to the point of hospitalisation.

She told the BBC: “I’ve done meetings from my bed with members of university senior management and I wouldn’t have been in that room if it wasn’t for the digital access.

“I just wanted to highlight the things that we’ve learned that have really benefited accessibility, to show employers and organisations how important it is to keep these things as an option.”

Accessibility means that people can complete an activity in a similar amount of time and effort as someone who does not have a disability, and they are therefore not excluded from it and can stay independent.

This could include replacing a reception desk at work with one that is at a lower height, so that a wheelchair user can see over the top of it.

Ruby says being able to work from home is the only thing that has allowed her to keep her first full-time job.

She says she has been “overwhelmed” by the response to her hashtag.

On the whole, some of the gains made from lockdown – such as home-working – have been welcomed by disabled people.

One Twitter user calling themselves Ghost Toast said their grades had “never been better” because they were able to attend all their university classes, which had moved online. Technology has also enabled them to rewatch classes.

“Online classes meant I was able to attend all my university classes and actually take things in and learn, instead of my disabilities getting in the way. And if I needed to, I could rewatch them, and my grades have never been better.”

Hazel felt that live-streamed events and social distancing helped her to manage her agoraphobia.

She said: “Events being on Zoom mean that I can actually attend despite my agoraphobia and social anxiety. Social distancing on buses means I can use them without fear of strangers sitting next to me. Outdoor seating at cafes means I can eat at them without having a panic attack.”

Several other people said they had managed to expand their circle of friends and their social life during the pandemic.

Purple Giraffe tweeted: “I have gained more friends through online events than I did before the pandemic. I have a bigger social life. I have a working-from-home job which means no more fatigue and stress from a London commute.”

Disability charities such as Leonard Cheshire have said it should not have taken a pandemic for employers to allow and enable remote and flexible working.

The charity said it’s important this “doesn’t go backwards” in the future.

Ruby is also hoping that employers and other organisations will continue to offer a mixture of digital and in-person activities. One of her biggest takeaways is that remote working is not suitable for all, including those with a disability.

Twitter user Julie said she had become more ill while working from home due to hyper-sensitivity to blue light, and constantly being in front of a screen. She describes her job as “unsustainable”.

“I think a combination of what works for people is really important,” says Ruby, “because one thing is not going to benefit everyone”.

Many employers say they would be willing to embrace a mix of home and office working in the future.

Ruby believes it is going to become even more important for employers and educational establishments to offer a combination of ways for people to engage with a workplace or a course, in order to attract talent.

She thinks there will be consequences for anyone who is not offering this flexible or hybrid way of working in the future, in terms of diversity.

“You’re excluding a whole group of people that could bring so much value to your life, organisation or institution.

“The last 12 months has just normalised digital access, despite it being quite frustrating that these provisions have only been put in place when it benefits the mass population – despite many disabled people asking for these things for years.

“It has been really beneficial and I think we’ve got this now – we’ve proved it works, let’s carry it on.”

PIP Claims: Too Many Northern Ireland People ‘Unfairly Rejected’

June 25, 2021

Too many people in Northern Ireland have had claims for their Personal Independence Payment (PIP) “unfairly rejected”, an investigation has found.

The damning report conducted by the Public Services Ombudsman Margaret Kelly was published on Thursday.

It found that applicants were kept “in the dark” by the Department for Communities and Capita, which carries out PIP assessments.

The communities minister said she was “committed” to “positive change”.

Capita said it will review the findings of the report.

PIP replaced Disability Living Allowance (DLA) in 2016.

Ms Kelly’s office carried out a 20-month investigation into complaints about the new system, which provides benefits to some of the most vulnerable in society. https://emp.bbc.co.uk/emp/SMPj/2.43.3/iframe.htmlmedia captionPIP claims: ‘It was a humiliating process’

In her report, she stated that “repeated opportunities were missed to make the right payment as early as possible in the process”.

It found that both the department and Capita often failed to seek and use further evidence, including that from medical professionals, in its assessments.

This meant claimants had to “continually challenge the decision, often all the way to appeal, before the correct decision was made”, the report stated.

It said the repeated nature of these failings constituted “systemic maladministration”.

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‘Intrusive, cold and calculated’

Londonderry woman Sinead Quinn, who lives with both physical and mental health conditions, said she was not surprised by the findings of the report.

She first applied for PIP in 2018 at a time when her health was “particularly fragile”.

In the years since, her experience of the system has been “absolutely horrific”.

“Every step of the way it is, in my opinion, set up to put people off,” she told BBC Radio Foyle.

It is a process that is “distressing and terrifying”, she said.

Three years ago she was awarded PIP after being assessed twice – after assessors lost her first assessment, she was called back three weeks later to undergo the process again.

Earlier this year, she was reassessed during a one-hour phone call. It led to her payment being slashed.

It was “intrusive, cold and calculated”, she said.

Ms Quinn added: “To be able to go on the telephone with someone you don’t know, as someone who struggles with mental health problems, is a massive challenge.”

She said that the process involved “very personal questions about how your disabilities affect you” and that the people were “not actually taking into consideration what you are saying”.

She recalled breaking down three times during the assessment.

“But my mental health was absolutely fine according to the assessor,” Ms Quinn said.

“How the decision was reached was completely inadequate.

“They didn’t even ask for any medical history from my GP. I have no idea how a one-hour conversation can give you a window into someone’s health for the last three years, or into the next three years,” she said.

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The ombudsman advised Capita and the department to “shift their focus to ensure that they get more of the PIP benefit decisions right the first time, so that the most vulnerable people in our society get access to the support that they need, when they need it”.

Ms Kelly said this would also safeguard public resources by reducing both the time and costs associated with examining the same claim on multiple occasions.

Among the investigation’s findings were:

  • Many PIP claimants received correspondence from Capita that said all health professionals listed had been contacted, when in fact this was not the case
  • Only one of the 96 cases considered included a request for further evidence after the initial review
  • The most common reason for not requesting further evidence was that “it was unlikely to be obtained within the timescale required”, despite the fact that there were six weeks available to gain evidence
  • Capita used information on the number of assessment reports completed and submission times to decide on salary bonuses for disability assessors; these had the potential to inhibit the appropriate use of further evidence in making assessments
  • Despite Capita and the department’s contention that further evidence has a key role in the PIP process, it was often only following the submission of an appeal to the tribunal that the role of further evidence was elevated
  • Too many vulnerable claimants may not have been identified for additional support at the start of the PIP process because of the department’s narrow interpretation of its own guidance

‘Not fit for purpose’

Foyle MLA Mark H Durkan, of the SDLP, described the report as “unequivocal proof of systemic maladministration”.

A persistent critic of the PIP system, Mr Durkan said the “the system is plagued by a litany of failures, inherent deficiencies and is not fit for purpose”.

“The report is scathing on Capita’s performance and questions really now need to be asked of Minister [Deidre] Hargey as to why she has extended their contract for a further two years,” Mr Durkan said.

“Ultimately, people are not getting the support or dignity they deserve,” he added.

In a statement, Communities Minister Deirdre Hargey said she was “firmly committed to enacting positive change in PIP delivery”.

Ms Hargey said her department has “consistently demonstrated that commitment by taking forward recommendations from statutory reviews previously carried out by Walter Rader and Marie Cavanagh”.

“I remain open to scrutiny and welcome the opportunity to drive further improvements in the service to ensure it is delivered in a compassionate and empathetic manner,” she added.

In a statement, Capita said: “We strive to continuously improve the PIP assessment process that we deliver on behalf of the department.

“We are committed to delivering a professional, efficient and kind service for every PIP applicant we assess.”

‘Beggar’s belief’

Samantha Gallagher, who helps claimants with PIP issues, said she was not shocked by the report’s findings as she finds the claims process very difficult.

Ms Gallagher, who works at Community Advice in Fermanagh, said medical evidence was being “disregarded by assessors” and she cited an example of one claimant whose PIP award was substantially increased on appeal.

“It beggars belief that weight wasn’t given to letters coming from consultants and neurologists and GPs – there are no words at times,” she told the BBC’s Good Morning Ulster programme.

Ms Gallagher said she believed the claims process was designed to be difficult to discourage fraudulent claims, but added that the majority of claimants were in genuine need and were suffering as a result.

“What we need to remember here is this is a health-related benefit – so it’s about people who have ill health. They need respect, they need to be treated with dignity,” she said.

“So far from what we can see, especially from the outcomes of this report, that has not been happening. We just need to remember we’re dealing with people, not numbers.”

PIP Mobility Awards Appear Manipulated.

June 24, 2021

The poor side of life

Thousands of claimants claiming PIP for mental health conditions are missing out on PIP payments because their reports appear to be manipulated.

Research conducted by Benefits And Work has shown that although the award rates rose for a year they’ve now dropped down to their previous levels which have started to rise again.

This is appalling because award rates should not have been shown to fall, they should have continued to rise and staying at a higher level.

Benefits And Work have also looked at the award rates for all conditions that the DWP consider would be affected by mental health and surprise, surprise they’re the same.

According to the DWP’s own estimates regarding mental health conditions approximately 6% of the entire PIP caseload should have moved from no award of the mobility component to enhanced.

Indeed a further 6% should have been moved from no award to a standard award.

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The Blind Couple Fundraising To Give Others Guide Dogs

June 24, 2021

A blind couple who say their guide dogs have been instrumental in the freedom they have experienced during lockdown now want to help others.

Mel Griffiths, of Nottingham and a dog health advisor for Guide Line, the Guide Dogs’ national helpline, walked the equivalent of 53 miles (85km) in a single week with her companion Elsa to raise money for the charity.

She is now aiming to raise £90,000 to mark the charity’s 90th year.

Mel, whose husband Gavin is also blind, said: “To be able to just get out there and walk for miles and miles, and just have that freedom to get out of the house every day has really kept me going through lockdown.”

Love Island’s First Physically Disabled Contestant

June 23, 2021

Progress? Of sorts.

For a show that’s long faced criticisms over a lack of diversity in its cast, the inclusion of Hugo Hammond as Love Island’s first physically disabled contestant feels a progressive move years in the making.

But it’s a step rather than a leap.

Hugo was born with clubfoot – which makes the foot twist downwards and inwards – but after numerous operations as a child, he says people can “only really tell when I walk barefoot. I’ve got a really short Achilles… I walk slightly on my tip toes.”

This will still no doubt spark conversation both inside the villa and among viewers at home, which will ultimately help raise awareness.

Of course Hugo’s disability doesn’t define him – he’s there as a dashing PE teacher and former cricketer for England’s physical disabilities side, and that’s before we get to know his personality.

But have producers done enough to accurately reflect disability in the modern dating world? Bosses previously told The Mirror in 2019 that the villa had not been adapted for people with disabilities due to insurance costs and “budget constraints”.

The nature of Hugo’s disability allows them to keep disability inclusion, and the social stigma surrounding dating someone with a disability, within convenient limits.

A toned Paralympic athlete who uses a wheelchair? Maybe next year.

DNA Kidderminster Hospital

June 22, 2021

Same Difference has received the following shocking and scary story by email:

A well-known activist against Assisted Suicide visited Kidderminster Hospital for a routine pre assessment for an operation to remove a cataract.

Albeit because of Covid and the fact that clinics have been moved to various hospitals around the region i.e. everyone in the Worcestershire Area goes to Kidderminster Hospital for Pre-operative eye screening. They then go to other hospitals for the actual operation which will be confirmed in due course.

The Activist was asked to sign a consent form for the operation and also given a document to “hand to the receptionist” albeit the activist had had eye drops administered and could hardly see the “hand to the receptionist” form it had DNA in several boxes with the option to tick boxes.

The writing was so small approximately 6 to 8 point font.

It was difficult to focus on also beside the DNA it said on some tick boxes end of life path or DNA refer back to GP and various other options with DNA at the beginning of each sentence.

Unfortunately the activist didn’t have a chance to take a picture of the document before it was taken off her by a member of staff being helpful said I will deal with that for you.

The majority of the staff were supportive and helpful however the activist considered the DNA form was a “catch all” document to be used in several areas in the hospital.

Considering the procedure is under local anaesthetic why is the form even used.

The activist was fortunate to have the skill to read the document and will be writing a letter dated and signed before the procedure and will ensure it is on her records before any invasive procedure can be done.

This is to protect her human right to live!

Triumph Trailer- Starring RJ Mitte

June 22, 2021

The Coward By Jarred McGinnis

June 22, 2021

Jarred McGinnis’s debut novel draws on his own experience of living with a disability, and his protagonist shares his name. “The distance between fiction and memoir is measured in self-delusion,” McGinnis writes, gnomically, at the start.

However close or not to the author’s life, the fictionalised Jarred certainly has no shortage of material: when he’s left unable to walk following a car crash at 26, it’s the latest trauma in a life full of them. Jarred’s mother died when he was 10, causing his father’s alcoholism to spiral and Jarred to turn into a self-destructive teenage runaway. When he rings his father, Jack, to ask him to collect him from hospital in Austin, Texas, it’s the first time they’ve spoken in a decade.Advertisementhttps://83940d1398757cce8572d039166aa2b6.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

The Coward moves between a present-day narrative of father and son trying to repair their relationship and a gradual, if rather heavily foreshadowed, revealing of all Jarred has been through. The author, himself a wheelchair-user, writes with pitch-black humour about the disabled experience, offering an utterly unsentimentalised perspective. Jarred can be self-pitying, but he scorchingly refuses anyone else’s pity; he makes a T-shirt emblazoned with the words “I am not your good deed for the day”.

Happily, Jack matches him in wise-cracking and piss-taking, and their cynical repartee gives The Coward real energy. But this is a book of two tones, and when things get serious, the story gets bogged down in melodramatic pronouncements and accusations (“you think you’re the only one with shame and guilt?”, and so on).

McGinnis writes about physical pain with much more distinctive vividness, however, and his reflections on addiction cut through. A scene where the teenage Jarred goes to his father’s AA meeting and resists “the selfishness of recovery” is particularly potent. And if the eventual redemption never really seems in doubt, the reader is still sure to feel invested in Jarred, and Jack, finding it.

Contaminated Blood Inquiry: The School Where Dozens Of Pupils Died

June 21, 2021

A public inquiry will this week hear from students and parents after more than 120 pupils at a school for disabled children were caught up in what has been called the worst treatment disaster in NHS history.

From 1974 to 1987, those children were offered treatment for haemophilia at Treloar’s College.

At least 72 died after being given a drug contaminated with HIV and viral hepatitis.

“We’ve lost so many friends from Treloar’s and it’s absolutely heartbreaking,” said Richard Warwick, a pupil at the Hampshire school in the late 1970s who was later diagnosed with HIV.

The inquiry into the use of infected blood began taking evidence from people connected to the school on Monday.

Former headmaster, Alec Macpherson, is one of those due to answer questions. “It caused those boys a lot of anxiety and a lot of upset,” he told the BBC ahead of the hearing.

“It put a rage inside them – why me, why has this happened to me, why have I got this dreadful disease?”

Lord Mayor’s Treloar’s College was a boarding school for physically disabled children with a specialist NHS haemophilia centre on site, run by a dedicated medical team.

By the mid 1970s, a new treatment for haemophilia, known as factor VIII/IX, became available for the first time.

It meant those with a serious form of the blood disorder could live a normal life without the risk of a bleed.

The NHS was not self-sufficient in the blood plasma used to make the drug so it was imported from overseas, most notably the US.

Batches were widely contaminated with hepatitis A, B, C and later HIV, infecting thousands of haemophiliacs across the UK.

Ade Goodyear joined Treloar’s in 1980 at the age of 10. He described life as “wonderful” with supportive teachers, nurses and good friends.

Like dozens of other boys at the school, he was given factor VIII to help control his bleeding.

“With one of my very first shots, I got hepatitis and was placed in isolation for two weeks,” he said.

In 1985 he was taken into a small office with a group of boys to be told he had tested positive for HIV – then a newly discovered virus with no known treatment and a short life expectancy.

“The doctor was upset and pointed at us and said, you have it, and you haven’t. And I was back in science by 1.50pm. I didn’t even get the afternoon off,” he said.

“A friend of mine picked up a pot plant and threw it against the wall of the haemophilia centre. It was a beautiful summer’s day and I remember thinking, how many more sunrises like this am I going to see?”

Ade’s two older brothers died after treatment with factor VIII – Jason from Aids in 1997 and Gary from health problems linked to hepatitis C in 2015.

For pupils like Ade and Richard it meant living with the stigma of what was then a little-known disease.

Students were followed by newspaper reporters outside the school gates and shouted questions about their HIV status.

Just 32 of the 122 haemophiliacs who attended the school from 1974 to 1987 are still alive today. Most died after contracting HIV or viral hepatitis.

It’s hoped the public inquiry will be able to answer questions about what happened at Treloar’s and the NHS haemophiliac centre run from the site.

Families want to know why they were not told about the potential risks of Factor VIII earlier and why it took many years until the drug was heat treated to kill viruses and other contaminants.

“What happened at the school comes back to haunt us every day,” said Stephen Nicholls, a former pupil who was infected with hepatitis C after his treatment.

“We will never forget the Treloar’s story and those memories of what happened here.”

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What is haemophilia?

It is a rare genetic condition in which the blood does not clot properly. It mostly affects men.

People with the condition produce lower amounts of the essential blood-clotting protein known as factor VIII and IX.

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Former students will give evidence this week, some anonymously, along with the parents of children who lost their lives.

The haemophilia centre on the site was run by NHS doctors and nurses and not staff directly employed by the school, which still cares for physically disabled children today.

“Although no-one has at any point suggested that Treloar’s was at fault, it is a tragic part of our past,” the school said in a statement.

“It was, and still is, a very difficult time for our affected alumni, their families and staff who were here at the point.”

Cola Boyy: Prosthetic Boombox Review – A Joyously Defiant Sugar Rush

June 21, 2021

On the cover of his superb debut, Cola Boyy sits strumming a guitar surrounded by various cartoon versions of himself, a jukebox in the corner of the room and his prosthetic leg on a table, next to a gun. “I wanted to take my disability and put it on blast,” the southern California musician, real name Matthew Urango, who was born with spina bifida and scoliosis, has said. His music has a similar playfulness – it’s hard to beat his publicity team’s apt description of it as “a time-travelling Delorean with Prince in the passenger seat” – though fuelling it all are prescient themes of unity and kicking back against the system.

Opener Don’t Forget Your Neighbourhood, with guest production from sampladelic team the Avalanches, is a deliriously upbeat paean to fighting for your town and belonging. Song for the Mister, dedicated to struggling single fathers, channels late-night minicab pop and pulls off the tricky balance of being irresistibly catchy and yet wonderfully moving. Air’s Nicolas Godin, MGMT and LA keysman-to-watch John Carroll Kirby crop up too amid the sugar rushes of disco, funk, house and psychedelia.

The giddy ride ends with Kid Born in Space, referencing people who have mocked him, though Cola Boyy is having the last laugh: Prosthetic Boombox is a slick pop rocket firing off towards exciting new dimensions.

Fourteen Years Of Same Difference!!!

June 21, 2021

It’s hard to believe but it’s true. Same Difference started fourteen whole years ago today!

In that time it has grown beyond my wildest dreams.

But, readers, I have never once forgotten that I wouldn’t be here without you. This is my annual post of thanks, and my reminder to you all that I still read every comment and appreciate every hit.

I wish every single one of you the very best, always.

Samedifference1

Guardian Interview With Jo Whiley

June 18, 2021

The Guardian have interviewed Jo Whiley on her campaign to change the vaccine priority list and her work as a DJ and presenter.

Disabilitease: The Disabled Performers Owning The Stage

June 17, 2021

What connects burlesque, body confidence, and people with hidden disabilities? Emma Donohoe meets the performers owning their sexuality and challenging perceptions as part of a new documentary for BBC iPlayer.

Through cabaret and burlesque they’re trying to put together a show called DisabiliTease… but it’ll be touch and go whether they can they sell enough tickets to make it succeed.

“I feel like I’m flying, don’t feel my pain anymore…a lot of people don’t think we’re sexual or have sex… it’s seen as shameful and should be hidden, [but] it’s nothing to be ashamed of,” says Dottie May, one of the performers.

Every cast member in DisabiliTease has a disability. In coming together for the first time their goal is to create a platform for people with disabilities both visible and invisible – where they can showcase their talents and find their performances empowering and liberating.

Covid: Deaf Campaigner Takes Legal Action Over No 10 Briefings

June 17, 2021

A deaf campaigner is taking legal action against the government, after complaining that it failed to provide in-person British Sign Language (BSL) interpreters at No 10 Covid briefings.

Katherine Rowley, 36, from Leeds, says the government breached its obligations under the Equality Act to make broadcasts accessible to deaf people.

She says the failure to convey vital facts led to “stress and frustration”.

The government said it was “committed to supporting disabled people”.

A spokesperson said BSL interpretation of the No 10 coronavirus briefings was available on the BBC News Channel and BBC iPlayer, which could be accessed via Freeview.

“We continue to work across government to ensure that information and guidance is fully accessible,” he added.https://emp.bbc.co.uk/emp/SMPj/2.43.2/iframe.htmlmedia captionVicky Foxcroft MP asks the PM why there is no sign language interpreter in his briefing room

Ms Rowley was 25 weeks pregnant when she started the claim for a Judicial Review, which will focus upon two Covid briefings in September and October 2020.

During those two briefings there was no sign language interpreter at all, either in person or superimposed by broadcasters.

She says the stress she suffered in being unable to access government information during the briefing, impacted on her pregnancy and her wellbeing.

Speaking to the BBC through an interpreter, Ms Rowley said: “It was frustrating. Why wasn’t there an interpreter on the television?

“It’s important to get that information – the world should know – and for me, on my own, where is that information?

“I feel ashamed – I’m deaf, I can’t access information – but really it isn’t my fault, not at all.”

At the High Court on Wednesday, Ms Rowley’s barrister Catherine Casserley argued there has not been a BSL interpreter present in the room with the speakers at any of the UK government Covid briefings in England, unlike in Scotland and Wales.

She said providing “on-platform” interpretation would have been more inclusive than broadcasters superimposing an interpreter, because it means the sign language is visible wherever and whenever footage of the briefing is shown.

‘It became impossible’

The government was failing to meet the obligations of equality legislation and it should be ordered to provide on-platform legislation, Ms Rowley’s barrister said. She is also seeking compensation for injury to feelings, the barrister added.

Zoe Leventhal, the barrister representing the Cabinet Office, said the claim should be dismissed.

She said “damages for injury to feelings” were “not merited here”.

Mr Justice Fordham, who oversaw the online trial with sign language interpreters, said he would deliver a ruling at date to be determined later.

The High Court heard that there are 70,000 deaf people in England who use British Sign Language.

Ms Rowley’s solicitor Chris Fry said he is also representing 350 other deaf people who have made similar claims to Ms Rowley, but their cases are on hold until this one is decided.

Many who use BSL as their first language say they cannot rely on subtitles because the average reading age for deaf people is nine years – much lower than those in the hearing population.

“I have dyslexia myself – I am a slow reader – so that means when I was reading the subtitles, I would miss so much information and [it] would just mess up my head. It would be so difficult – it became impossible,” Ms Rowley told the BBC.

Lynn Stewart-Taylor started the #WherestheInterpreter campaign after the first Covid briefing in March 2020.

Despite watching it, she said she came away with nothing of what had been said, as there was no interpreter.

“Lots and lots of other countries have managed to get the interpreter in the same room. It’s accepted that members of the deaf community get the information at the same time as the hearing members of the community.

“We seem to be the only country that haven’t been able to make that happen and we feel very separated and segregated.

“We don’t feel accepted, we don’t feel that our language is respected and recognised. It’s almost as if we don’t exist.”

Mr Fry, the solicitor representing hundreds of deaf people in their claims, said: “Ensuring that information is provided in an accessible format can rarely be more important than in the midst of a pandemic.

“This case has brought deaf people together in the most remarkable way to challenge the government to do better, and to fulfil what we say are its obligations under the Equality Act.”

‘Unsafe and scared’

Amanda Casson-Webb, joint chief executive of the Royal Association for Deaf People, said this was the first time the deaf community had joined forces to litigate a Judicial Review on the provision of sign language interpreters.

A government spokesperson said: “We are committed to supporting disabled people through every stage of this pandemic and have established BSL interpretation at the No 10 press conferences via the BBC News Channel and iPlayer, available on all TV packages as part of Freeview.

“The BBC has also made their video feed for the BSL interpreter available to all other broadcasters and for use on No 10 social channels.”

But deaf people supporting the Judicial Review say having an in-person interpreter at briefings avoids any technical issues and ensures that a BSL-interpreted version is available on any channel.

Covid Vaccine To Be Required For England Care Home Staff

June 16, 2021

This is good news, and a victory for common sense and for the protection of the most vulnerable.

Vaccinations are to be made compulsory for care home staff working with older people in England, the BBC understands.

The move, first reported in the Guardian, is expected to be announced by the government in the next few days.

Care staff are expected to be given 16 weeks to have the jab – or face being redeployed away from frontline care, or lose their jobs.

The government is also set to begin consultations on compulsory vaccination for other health and care staff.

Care organisations have warned that compulsory vaccinations could cause significant difficulties in a sector which already struggles to recruit.

The government, however, is believed to have considerable concerns about low take-up of the vaccine in some areas, including London.

Workers who can prove they are medically exempt from getting the vaccine will not be affected by the measure.

The move follows a consultation by the Department of Health and Social Care.

A department spokeswoman said: “Vaccines are our way out of this pandemic and have already saved thousands of lives – with millions of health and care staff vaccinated.

“Our priority is to make sure people in care homes are protected, and we launched the consultation to get views on whether and how the government might take forward a new requirement for adult care home providers, looking after older people, to only deploy staff who have had a Covid-19 vaccination or have an appropriate exemption.”

She added that the department’s response to the consultation would be published “in due course”.

DWP Resort To Dirty Tricks To Try To Prevent Second Inquest For Jodey Whiting

June 16, 2021

With many thanks to Benefits And Work.

 

Joy Dove, the mother of Jodey Whiting has condemned the ‘abominable’ behaviour of the DWP as they resort to dirty tricks to prevent a second inquest into Jodey’s death, with even the High Court judge criticising their callous behaviour.

Jodey died in February 2017. Her ESA had been stopped after she failed to attend a work capability assessment.

Jodey had been seriously ill with pneumonia, had been receiving treatment for a cyst on the brain and was taking strong painkillers. Nonetheless, she had been refused a home assessment for her ESA and failed to open the appointment letter for a WCA at an assessment centre.

As a result, her benefits were stopped.

An inquest into Jodey’s death lasted less than an hour and failed to even look at the part the DWP played in the tragedy.

Her family have since been fighting for a new inquest to properly examine the part played by the DWP.

The DWP have known since December that a hearing was due to take place on 22 June.

Yet with just three weeks to go, the DWP suddenly applied to be made a party in the case and to have permission to address the court orally on three separate matters.

This would have made the case last much longer, probably meaning it would have to be relisted for a later date. It would also have greatly increased the costs for Jodey’s family and massively increased the distress her mother is experiencing as she takes on the coroner’s court system and the DWP.

The judge in the case was very critical of the DWP’s late intervention.

Instead of allowing three oral submissions, they are only allowing written submissions on one point.

This still means the case will last for one and a half days, instead of just one day

Joy Dove said:

“I am appalled by the behaviour of the DWP. I believe they caused my daughter’s death by their callous disregard for the anguish they caused her and now, with the same abominable attitude towards ordinary people, they are causing me more distress. They have known about my application for a second inquest since December and only now, just 10 days before the hearing is due to take place, have they got around to addressing Jodey’s case.”

Leigh Day partner Merry Varney said:

“We are pleased that the judge recognised that the Secretary of State’s behaviour towards Joy Dove has been woeful and that at this stage he has only allowed her lawyers a limited narrow role in the hearing in her application for a second inquest into the death of her daughter.

“The conduct of the Secretary of State has caused significant additional and wholly avoidable, distress for our client. No adequate reason has ever been provided for the delay and now, at this very late stage, because the hearing will now take longer, she has put our client to extra expense and inconvenience, as well as worry and distress. We welcome the Court’s recognition of the lack of apology or regard for our client by the Secretary of State and our client and her family hope the High Court will recognise the ongoing need for justice for Jodey and to allow her daughter the inquest that her case clearly merits.”

Medical Treatment Was Withheld From People With Learning Disabilities During Pandemic

June 15, 2021

Medical treatment was withheld from people with learning disabilities during the pandemic, The Telegraph can disclose.

Patients admitted to hospital with Covid-19 were not given potentially life-saving treatment because of their conditions.

The learning disability charity Mencap said they were aware of cases where “treatment was withheld” and this led to the patient “dying prematurely”.

The disclosure will fuel concerns about how patients with learning disabilities were treated during the pandemic and raise questions about how medics view individuals with such conditions.

Office for National Statistics figures from last year show that nearly six out of every 10 people who died with coronavirus in England were disabled.

Last week, the Telegraph revealed how patients with mental illness and learning disabilities were given “do not attempt resuscitation” (DNR) orders in England during the pandemic.

Matt Hancock pledged to investigate orders that were “inappropriately” given and said that he wanted to “know” about any cases where people may have been “disobeying the guidance”.

The Telegraph has been told about cases where people with learning disabilities did not receive some treatments during the pandemic.

Edel Harris, chief executive of the organisation, told The Telegraph that “during Covid some people did not receive the level of care they deserved when they were admitted to hospital”.

“We are aware of cases where families believe treatment was withheld because their loved one had a learning disability and, in some cases, this led to them dying prematurely”, he said.

A woman whose sister caught Covid-19 in a care home in the south of England has also alleged that her relative was denied treatment because of her disability.

Sherin Ratcliffe’s sister – who was in her 50s and had down syndrome – caught Covid-19 in the care home where she lived.  

Once in hospital, Ms Ratcliffe’s sister – whom Ms Ratcliffe has asked The Telegraph not to name – struggled to breathe.  

Ms Ratcliffe said her sister was “a jolly soul”, but had the mental age of an 18-month old and was non-verbal. She moved into the care home after her parents became too elderly to care for her.

When her sister was being treated, Ms Ratcliffe asked about use of a CPAP mask – a machine used during the pandemic to help patients breathe more easily – and a doctor said “‘it would be too distressing’ for my sister to administer more intensive treatment because they couldn’t sedate her to apply this kind of treatment, she had to be conscious for it”, she said.

A couple of days later, the hospital said that her sister’s oxygen levels had dropped further and the next step would be palliative care.

Ms Ratcliffe’s sister died on April 26.

Ms Ratcliffe said that although the hospital did their best for her sister, she was “concerned that given the pressures that they were under… it just becomes a de facto thing that for people with learning disabilities, the treatment only goes up to a certain point and then will not continue”, she said.  

‘The 80s Song That Brought My Lost Memory Back After 10 Years’

June 15, 2021

A drumbeat comes in, then the keyboard. A sequence of notes marches towards the singer.

“I pictured a rainbow

You held it in your hands

I had flashes

But you saw the plan”

The music reached somewhere deep in Thomas’s brain.

And as the lyrics of The Waterboys’ 1980s hit, The Whole of the Moon, came through Thomas’s earphones, he experienced six flashbacks – each triggered by the one before.

For the 30-year-old, this was an extraordinary moment. One he had craved for 10 long years – ever since his entire memory had been wiped when he was hit by a car. “It was the most magical thing ever,” he says of the memory-chain.

“I was sitting on this weird blue floor and I could see this silver radio. Then, I was in another place and I was holding this man’s giant hand… and then there was another memory.”

He recalled a Christmas tree, towering over him. “There was a woman standing, and she was young and she was smiling and she didn’t have grey hair. It was my mum and I was her little boy. And it was real.”

Thomas immediately wrote the memories down.

He needed to be sure they were real, and it wasn’t his brain playing tricks on him. Could it simply be another manifestation of his brain injury, like the personality change and face-blindness he had contended with?

But if the flashbacks were real, how had his brain, finally, managed to unlock his memory?

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It was evening and still busy in central London when Thomas Leeds headed to Green Park station to pick up a lift from his father. The 19-year-old was on a gap year before starting university and had been to meet a friend.

At 21:00 GMT, he crossed the road and was hit by a car.

The officer who witnessed the accident was visibly traumatised when he later recounted what had happened.

Thomas had been thrown over the roof of the taxi and landed on his head. The front of the vehicle had been dented, the bonnet wrecked, the windscreen smashed and the roof concaved by the impact of his body.

Thomas’s father, Dr Anthony Leeds, rushed to St Thomas’ Hospital after the police called telling him there had been an accident.

But Thomas, it seemed, had been extraordinarily lucky and escaped with a minor head injury. “There was very little evidence of injury other than scratches and bruises,” Anthony remembers. The next morning, Thomas was discharged from hospital.

Over the next couple of days Thomas complained of nausea, a terrible headache and back pain. When the police officer phoned for an update he was shocked to learn Thomas had been discharged. This unsettled Thomas’s mother, Jacqueline. “The officer’s feeling was no-one could walk away from that,” she says.

After hearing this, she took Thomas to A&E and demanded a scan. It revealed the “utterly shocking” truth – a blood clot had formed in his brain.

“He was 24 hours away from death,” Anthony says.

Thomas underwent surgery to remove the clot. And when he came around in the intensive care unit, he was said to be docile.

“I have vague memories of being very confused, but oddly enough I wasn’t afraid. I didn’t know to be afraid,” he says. “I was like a baby.”

He describes being in an “emotional bubble” – something brain injury charity Headway says is common after a head trauma because of the chemical imbalance caused. It can leave the patient feeling, surprisingly, content.

Thomas enjoyed seeing the people who came to visit him as he recovered. Though they seemed familiar, when they told him they were his parents and his five siblings, he couldn’t recall them.

Everyone put this early confusion down to the effects of the morphine.

“He walked and talked and that to us was fine,” Jacqueline says. “That’s the most we could have hoped for, so we didn’t go probing. We all assumed Thomas was okay.”

But when he returned home, Thomas didn’t remember the house – even though he’d lived there since childhood.

People tried to jog his memory about what he had been doing in the months before the crash by mentioning friends and the interests he had.

“I really tried to fit in with everybody when they told me these stories,” he says, but he remembered nothing.

Realisation slowly dawned on the family – Thomas had lost all of his pre-crash memories.

Initially this didn’t faze him. The first few years drifted past as he recovered from three back fractures also sustained in the accident. He says the “emotional bubble” continued to cocoon him.

“I suppose it’s how most people remember their childhood summers. Everything was wonderful, so big and unlimited, and I sort of remember – it sounds so silly – just sitting in the park under trees.”

Thomas was fortunate because, although he couldn’t remember his school days, he had retained basic levels of reading, writing and maths. What had gone was his cultural knowledge and references – the things at the heart of conversations and relationships.

And while he was able to make new memories, his personality had changed, too. This is something a traumatic brain injury can do. Previously, he’d been cooler and more reserved, but now he was affectionate and excitable.

“My brother wasn’t glad that I’d had this accident but he was like, ‘You’re much nicer’,” Thomas jokes. His mum Jacqueline noticed it too. “He is very emotional. He’s very open. There’s something of the child that isn’t in the others.”

As Thomas recovered he began to wonder about his future.

He thought about the university place he’d been due to take up before the crash. He had planned to study design, but when he looked at his drawings they no longer interested him.

“That boy that I was, just feels no more real than an ancestor. You know they existed and maybe you’ve seen pictures but they don’t feel real,” he says. “The first few years it didn’t bother me. We were all so young so everything was about ‘tomorrow’. But as our 20s ticked by, everything became about ‘yesterday’.”

Thomas’s future had stalled. Meanwhile, his siblings and friends were now in their mid-20s and had moved on with careers, houses and children.

“I still felt very lucky to have all that I did and just be alive, but having to face the hard facts of the future without a beginning started to feel really unfair.”

And there was something else missing in his life too – love.

Internet dating was starting to get a better reputation by 2010, so Thomas signed up. He met a few girls but nothing came of it. Christmas was approaching when he arranged to meet Sophie. She was also a Londoner, and also had five siblings.

After telling her about his unique situation, they met for dinner and went for a wander through the West End. They hit it off and planned to meet the next day. As they parted, Thomas said: “I’m sorry, but I won’t recognise you tomorrow.”

There was another complication from the crash. Thomas had developed prosopagnosia – face blindness. It meant he couldn’t recognise anyone out of context, not even his parents, let alone a girl he had just met.

With face blindness, the brain is unable to recognise the variations in faces – the arch of an eyebrow, the angle of a tooth, all of which help us identify people.

Many of the 1.5 million people in the UK who have it are born with it, but Thomas’s accident had damaged a small area at the back of his brain responsible for vision, recognition and co-ordination.

He learned strategies to recognise people using location, context and dropping pins in mobile phone maps, and he can place someone on hearing their voice. But there was something different about Sophie. “The week before we met, she’d dyed her hair bright red, that sort of crazy red. She was like a beacon.”

For the first time in years, Thomas was able to recognise someone in a crowd, and their love story began.

They dated and two years later they married. Soon after, one daughter came along, then another. Sophie never stopped dying her hair and is still the only person Thomas can recognise.

“She’s amazing. She always makes me feel that she’s lucky to have me. It made me feel a lot better about the future.”

Ten years on from the accident, although Thomas had re-visited locations from his past and interrogated family and friends, none of his memories had returned.

And then came the remarkable breakthrough. Thomas had curated an ’80s playlist for his 30th birthday – music he, apparently, grew up with. The night before his party, he went to bed and put his earphones in. He listened to the playlist track-by-track and knew all the songs by heart.

He pressed skip one more time. Somehow, the track The Whole of the Moon, which peaked at number 3 in the UK charts, located Thomas’s past.

“It really changed everything for me,” he says of the series of flashbacks.

“It was so short, nothing was said, but knowing that it was real and I’ve got it in my head and it’s not just a story, and it’s not just a grainy photograph … it was a little bit of my beginning.”

To explain the science behind the flashbacks, neurologist Dr Colin Shieff says memories are made up of “packets of chemicals” involving various dimensions including smell, taste and touch.

“It just needs little memory chemicals floating around to trigger a slightly bigger picture,” he says. “That causes a cascade that he translated into a vision.” After years of miss-firing, the packets of chemicals in Thomas’s brain had collided and unearthed memory.

So were they always there?

Dr Shieff says Thomas’s long-term memory is probably still there but remains out of reach in an “absolutely terrible filing system”.

“You can have a manuscript of a book, and when you read it it’s wonderful. But if you drop those sheets and someone picks it up, then they’re faced with pages with lots of content that doesn’t follow. Some of the pages have got a bit screwed up and crumpled.”

A second burst of memories happened years later when Thomas came across The Snowman on YouTube while he was trying to learn about the childhood references he had lost. The unique images and soundtrack triggered another memory – lunchtime in the school canteen.

“It was enough to make me feel like I have an education,” he says.

Dr Shieff says “recovery can continue indefinitely”, so there is scope for Thomas to unearth more memories but no certainty.

As a stay-at-home Dad to his two young daughters, Thomas says “some days are better than others”, but little things like running around the park after his children can be difficult because face blindness makes it harder for him to recognise them.

He says the “empty years” sometimes get him down, but his daughters play in the same parks he once did, and he is creating new memories with them.

Another legacy of the crash is epilepsy, and on “bad head days” he can’t leave the house.

“The scar tissue of my brain interferes with the signals and is what causes me to have seizures. And that seems to be affecting my memory more and more.

“Knowing I might lose control of my consciousness can be quite terrifying.”

After a tonic-clonic seizure – where he loses consciousness – he temporarily loses about 10 years of memory. The last time it happened, he came round thinking it was 2008.

“I didn’t know who my wife was, didn’t know who the kids were. Sophie showed me the Amazon Echo smart speaker and it blew my mind.” He sees the humour in it now, and the family writes down these funny episodes so they’re there in black and white for Thomas to remember. Always.

He’s also become passionate about creative writing, an interest he apparently shares with his childhood self, and has written a fantasy-adventure for 8-to-12-year-olds.

His protagonist, Jayben, has epilepsy and wakes up with no memory in a world of elves – he’s a hero being hunted and must recover his memory before he is found.

He preferred writing a children’s book rather than a memoir because this way he wouldn’t be reliving his own story. He says it is therapeutic to turn the pain and difficulty into “something new and exciting”.

The book is the first in a series and has been signed by The Good Literary Agency. Thomas says he’s excited about the next chapter in his life. And while his writing moves forward, he is still trying to piece together his history.

“It’s been 18 years now and I am this person. It’s lovely knowing a little bit of who I was before, but I’ve had such a life now.” And he still treasures that flashback of his Mum at Christmas.

“Just knowing that I’ve got something real from before, from the beginning of my story, really helps me face the future.”

Call For Urgent Action To Prevent Learning Disability Deaths

June 14, 2021

People with learning disabilities are still dying 25 years earlier than the rest of the population, a report has said.

The Learning Disabilities Mortality Review (LeDeR) calls for urgent action to prevent more avoidable deaths.

A quarter of learning disability deaths were caused by Covid in 2020, compared to 13% of other deaths.

NHS England said improving the health of people with a learning disability was a priority.

The LeDeR was established in 2015 to try to understand why so many people with learning disabilities were dying from avoidable causes, and to try and improve their access to healthcare.

The latest report compares data from the deaths of 9,110 people with learning disabilities who died over the past three years.

It found that while there had been some small improvements – life expectancy had increased by one year – people were still experiencing huge inequalities.

Pandemic highlighted disparity

In 2020, 24% of learning disability deaths were caused by Covid-19 compared to just 13% of deaths in the general population.

The peak month for deaths from Covid-19 was April 2020, when 59% of all deaths were from the virus.

It was the leading cause of death in men over 35 and women over 20 with learning disabilities throughout the past year.

Reviewers found that poor testing provision, a lack of support from specialist services and difficulties using the NHS 111 service played a part in many of the deaths.

In nearly a third of ‘do not attempt cardio-pulmonary resuscitation’ (DNACPR) orders made in relation to people who had died from Covid-19, the correct procedure was not properly followed.

In some cases, the reason given for a ‘do not resuscitate’ order was because the person had a learning disability.

One example cited in the report was because the person was “wheelchair-bound, needs to be hoisted, care home resident, learning disability.”

They also found many examples of poor care – in 42% of the deaths in 2020, reviewers felt that the person’s care had not met good practice standards.

‘Son denied use of ventilator’

Steven Baskin’s family feared that he could have become one of those statistics. The 43-year-old, who has Down’s Syndrome, was treated in hospital for Covid-19 at the beginning of the outbreak, in March 2020.

His father, John, was told that his son would not be given access to a ventilator should he need one, because of his “underlying health conditions”.

He said: “I received a call from a doctor who told me that a decision had been taken – should Steven require the use of a ventilator, then this would be denied.

“I was exercising in the park at the time of the call and had to find a bench to sit down – I was really taken aback.”

He discussed Steven’s condition with other senior doctors who intervened, and the decision not to give him a ventilator was reversed.

He said: “Steven had undergone treatment which affected his immune system, but other than this, he was perfectly healthy, and his treatment was going well.”

Steven recovered from Covid-19, but his family felt they had had to fight to get him the access to healthcare they felt he needed.

‘Not enough progress’

Report author Pauline Heslop, who is based at the University of Bristol, said: “This year, for the first time, we have been able to compare data based on the year of a person’s death.

“There are some small signs of progress being made, but this is not sufficient, nor sufficiently well distributed across people with learning disabilities from different ethnic groups.

“Actions taken to date, while welcome, have clearly not been enough to make the progress we should expect to see.”

Claire Murdoch, mental health director for NHS England, said: “Every year, people with a learning disability die sooner than they should and many from potentially avoidable conditions, such as constipation or aspiration pneumonia.

“Despite the pandemic, the NHS has ensured that three-quarters of people over the age of 14 with a learning disability have received their annual health check, two years ahead of the Long Term Plan target,” she said.

“It is vital we use this report to make real and lasting change to help close the health inequality gap seen throughout society.”

E-Scooters In Three Cities To ‘Hum’ After Safety Concerns Raised

June 14, 2021

E-scooters in three cities will be modified to make an engine-like hum to alert people to their presence.

Provider Voi said 20 scooters in each of Birmingham, Bristol and Liverpool would be adapted as part of a trial to assess the impact on blind and partially sighted pedestrians.

It will also work with the Royal National Institute of Blind People.

It follows criticism from some quarters about the impact of the quiet e-scooters in trials across the country.

All Voi e-scooters are equipped with a bell, but Voi hopes the humming noise will now automatically alert other road users that an e-scooter is approaching.

However, Sarah Gayton, of the National Federation of the Blind of the UK (NFBUK), said it would be “terrifying” and would not protect blind people.

“It will be terrifying, this being emitted all over the pavement.”

She said if a visually-impaired person heard the noise, they “would probably freeze and stand still but wouldn’t be able to get out of the way”.

Andy Street, West Midlands mayor, welcomed the latest trial in Birmingham, the Local Democracy Reporting Service said.

“It is great to see Voi once again learning from people’s experiences on the road to adapt and change their scheme,” he said.

“The whole point of trialling e-scooters in the West Midlands is to see how best to integrate them into our towns and cities.”

The three-month pilot will run alongside a formal consultation on the use of artificial vehicle alert systems with visual impairment organisations, local authorities and police, Voi said.

But Ms Gayton said: “It’s gone past any mitigation – the trial just needs to end. The riders are literally out of control in Birmingham. It’s just not safe in that city any more.”

Earlier this week, West Midlands Police said it was starting a month-long operation to “tackle riders who break the law and put others at risk”.

The force said the move followed complaints about inappropriate use of e-scooters. Those caught face having it seized or having their accounts to hire one suspended.

Jack Samler, general manager at Voi UK and Ireland, said: “Electric engines on e-scooters, like those on electric cars and buses, are extremely quiet, which can be unnerving to other road users.

“By adding an appropriate sound we can hopefully improve the safety of our operations for all road users, including those who are vulnerable because of sight loss.”

After A Year At Home, Children With Disabilities Deserve Priority Vaccination

June 11, 2021

They disappeared more than a year ago and many are still out of sight. When the pandemic hit, 53,000 under-18s in England with disabilities that made them vulnerable to coronavirus began to shield away at home.

Kept off school long after their classmates went back, and away from friends, they have found their childhoods put on hold. And while the vaccine rollout gave high-risk adults some reprieve in the new year, those aged under 16, who have not been eligible for any vaccine, are still living in limbo.

Yet we have barely heard a thing about disabled children’s plight through the coronavirus crisis – a silence that has not been helped by the faux-reassuring narrative that “no healthy child” has died from the virus. And now that the UK regulator has at last approved the Pfizer vaccine for 12- to 15-year-olds, this blind spot is becoming even more glaring.Advertisementhttps://a55a4e2610d50bee315ac7fe10ceddc1.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

The debate about immunising young people is centred almost exclusively on whether every teenager should be vaccinated in order to ease transmission. Clinically extremely vulnerable (CEV) children, meanwhile – who are desperate for protection themselves – are barely being mentioned.

I’ve spoken to many families with disabled children who have been living in fear over the last year. Parents going to work terrified they will bring the virus home to their child, or even quitting their jobs to protect them. Children who are shielding 24/7 at home, missing classes, socialising and routine activities. Some have had to choose between their education and their health, while others have had no say in it. I’ve heard from parents whose children have effectively been banned from classrooms because their disability means they’re unable to socially distance.

At the same time as missing school, children with disabilities have also had respite care and community schemes pulled; a survey by the Disabled Children’s Partnership found three-quarters of families with special needs had lost out on care and support services during lockdown.

It is hard to imagine politicians and the media greeting this with a similar lack of interest if it was happening to “normal” children. There is much concern about the impact on pupils of missing months of school, and rightly so – but there’s almost no recognition that some disabled pupils have missed an entire year, with no plan as to when they can return.

Disabled pupils are already less likely to get A* to C grades than their non-disabled peers owing to multiple structural barriers. The special educational needs and disabilities (Send) system was “in crisis”, according to the Ombudsman, before the pandemic threatened to push their life chances further back. This is only exacerbated by the fact that families with a disabled child are more likely to be in poverty, so often can’t afford a laptop or broadband for home schooling, let alone the complex disability support their child needs.

Ministers appear to be doing little to help bring disabled pupils back to classes. Even as the Delta variant of Covid spreads in schools, the government has dropped its requirement for secondary pupils to wear masks in class – much to the ire of teaching unions – – while the number of coronavirus tests being done in secondary schools is reportedly decreasing.

It is striking that Britain still has no plans for inoculating high-risk children, while other countries such as the US and parts of Europe have already made significant gains in vaccinating all teenagers. Contact, the UK charity for disabled children and their parents, tells me it is “surprised” that the Joint Committee on Vaccination and Immunisation (JCVI) thinks that “even CEV children are low risk, after they have been asked to shield for many months”. Data from the US shows that nearly a third of teenagers hospitalised with Covid this year required intensive care, and 5% required mechanical ventilation, while children with conditions ranging from congenital heart disease, diabetes, asthma, to sickle cell disease, could be at increased risk for severe illness from the virus.

There has long been concern that Britain’s “age-based” rollout has failed to fully recognise the risk facing disabled young people; at the beginning of the rollout, many younger disabled adults had to wait for a jab while healthy older people were given priority.

The JCVI is currently considering whether to include teenagers in the vaccine rollout, but in doing so it must prioritise the needs of those with disabilities. If it is decided that teenagers aren’t eligible for a vaccine, an exception should be made for any who are clinically vulnerable. If all teenagers are included in the rollout, CEV pupils should be at the front of the queue, just as CEV adults were. There is no reason this cannot be done alongside other priorities, such as giving jabs to children in variant hot spots such as Greater Manchester and urgently donating vaccines to adults in developing nations.

After the hardest of years, children with disabilities and their parents deserve action as soon as possible. Every day treading water is another day where teenagers are struggling at home away from friends and teachers, anxious about how to stay safe. There is one lesson that should not have to be taught: disabled children’s lives are worth just as much as anyone else.

E-Scooters ‘Not Safe’ Without Audible Signals

June 10, 2021

A visually impaired woman from London says e-scooters are not safe enough to be used across the city as they do not have audible signals.

The signals, which alert pedestrians to the silent e-scooters, will not be installed for at least two months.

Transport for London (TfL) said in May the e-scooters would have audible warning systems that could be used without riders adjusting their grip.

It now says that all e-scooters on the rental scheme are fitted with bells.

The RNIB (Royal National Institute of Blind People) said e-scooters posed potential risks to blind and partially sighted people because “they are fast-moving, difficult to detect, and are often ridden on the pavement despite this being illegal”.

London’s walking and cycling commissioner, Will Norman, said the trial could not be stopped to fit them.

He said: “We can’t stop the trial before everything is brought in because we need to continue to learn and continue to make improvements.

“New features will probably come in over time if and when concerns are raised.”

But Karishma Shah said it was a “massive risk”.

“I don’t think they should have been released without the audible signals or any form of inclusivity because we want to make them as safe as possible, not just for the riders but for every user group – people who use pavements, disabled people, older people, non-disabled people.”

London has become the latest UK city to launch a year-long trial in which e-scooters are available to rent. Riders can rent them in Canary Wharf, Ealing, Hammersmith and Fulham, Kensington and Chelsea and Richmond.

The scooters cannot be ridden on pavements and have been programmed to have a top speed of 12.5mph (20 km/h).

It is illegal to use privately owned e-scooters on public roads, pavements and cycle routes.

Ms Shah, who is from Croydon in south London, said she feared e-scooters as she has almost banged into them in the past.

“I fear things that I cannot hear but that I know are coming really fast and I fear that I have to consciously make so much effort to hear all these things just to carry on living like how a non-disabled person would,” she said.

Transport for London said it would be at least the end of July before audible sensors were installed on the e-scooters.

E-scooter operators, Lime, TIER and Dott – which are involved in the trial – said they could not provide exact dates for audible sensor installation, but that a shortlist of sounds was being tested.

Dott said it would have its first sound file tested in defined laboratory conditions by representatives of RNIB by the end of July but added signalling would not be rolled out immediately as the balance between audible detectability and noise pollution needed to be tested.

The RNIB said: “While having a properly researched and designed safety sound would help with detectability, we also need robust enforcement against pavement riding and parking, adequate off-pavement parking to be provided and the appropriate street infrastructure in place to keep pedestrians safe.”

Disabled People Miss Out On Almost £10M Of ESA

June 10, 2021

Predatory Marriage: Families Back Marriage Law Change Demand

June 9, 2021

Families whose elderly relatives fell prey to so-called predatory marriages have backed calls for a change in the law.

The practice involves vulnerable adults being led into a marriage which financially benefits their new spouse.

Leeds North East MP Fabian Hamilton says hundreds of families have contacted him since he first raised the issue in Parliament in 2018.

He brought it up once again at Prime Minister’s Questions this week.

Prime Minister Boris Johnson thanked him for highlighting the “injustice” and said he would secure a meeting with the justice department as soon as possible.

‘Secret marriage’

Daphne Franks said her 91-year-old mum Joan Blass, who had dementia, was a victim.

Mrs Blass met Colman Folan, a man 24 years her junior, in 2011, the same year she was diagnosed with dementia.

He moved into her home a month later, but Ms Franks, from Gledhow, Leeds, said it was only when her mother died in 2016 that the family learned they had married.

“None of mum’s friends or family knew about the marriage. It was done in secret,” she said.

While the registrar believed Mrs Blass had the mental capacity to make the decision, Ms Franks said her mother’s dementia was too advanced for this to be the case.

“Mum struggled to remember her date of birth. She had no idea how old she was at her 90th birthday party 18 months earlier and she couldn’t remember her address,” she said.

“Who knows where she thought she was or what she thought she was doing when she got married.”

When Mrs Blass died, Mr Folan inherited all her property and possessions.

Under English law, the marriage revoked her previous will which left everything to her children.

“The secret marriage just destroyed that will as if it had never existed,” Ms Franks said.

“All the personal belongings in the house now belonged to him, including my wedding dress and my grandad’s letters from the first world war.

“It was just heartbreaking.’

The BBC has attempted to contact Mr Folan.

In a previous statement he said: “Mrs Blass wanted to marry me and I believed at the time, and still do, that she has capacity to make that decision for herself.”

Another family said their father was targeted by a “predator whose aim was solely to gain financial benefit”.

Kate, whose name has been changed, said her father, a widower, was vulnerable and taken advantage of when he remarried at the age 77.

She said her father died in 2018 and his wife went on to strip his bank accounts of £200,000.

Both families are backing Labour’s Mr Hamilton in his call for a clamp down on predatory marriages.

In 2018, the MP presented a private members’ bill on the issue to the House of Commons but has yet to meet the Registrar General to discuss changes.

He said: “It’s shocking that someone can be married without knowing the contract they’ve entered into or that they’ve married at all because of the dementia they’re suffering from.

“It’s about time we updated our marriage laws that date back to the 19th century and make sure that vulnerable individuals don’t find themselves in that position ever again.”

Edinburgh author Lesley Kelly’s alternative Edinburgh pandemic series launched in braille for blind and partially sighted readers

June 9, 2021

A press release:

 

 

Edinburgh author Lesley Kelly’s pandemic crime thriller series has been launched in braille for blind and partially sighted readers. 

The ‘Health of Strangers’ crime fiction series, set in an alternative Edinburgh struck by a deadly virus, was penned  in 2016-2020 prior to the Covid-19 pandemic. 

The four novels follow the investigations of the North Edinburgh Health Enforcement Team as they fight to contain a spreading virus, encountering mystery, murder and corruption along the way. 

Partnering with the Scottish Braille Press, based in Edinburgh, to produce all the ‘Health of Strangers’ titles in braille, Lesley is delighted that the series will now be even more accessible for blind and partially sighted crime fiction fans who read braille.  

Lesley, who is based in Edinburgh and whose first novel, A Fine House in Trinity, was longlisted for the William McIlvanney Prize, said: “I am thrilled that my books are being published in braille for blind and partially sighted readers. 

“The series is based on my work experiences in emergency planning, and accurately predicted a number of pandemic issues, including vaccine passports, hoarding, and debates about civil liberties. It also deals with isolation, which may reflect some of the experiences of blind and partially sighted people during lockdown.   

“Reading has been a comfort to many people during Covid, and we’ve seen a huge interest in books with contagion themes, from Camus’s The Plague, to Scotland’s own Louise Welsh with her trilogy of virus novels.  I hope braille readers enjoy my contribution to pandemic literature.”    

The real-life Covid-19 pandemic has further highlighted and compounded the challenges many blind and partially sighted people face in the community, with many experiencing additional challenges such as difficulties with being able to adhere to social distancing and increased social isolation.   

Easy and reliable access to accessible formats, including more literature and information available in braille, audio and large print, is essential to ensure blind and partially sighted people have equal access to important information, as well as the joy of reading for pleasure. 

The Scottish Braille Press, which is run by sight loss charity Sight Scotland, is a leading provider of accessible media for businesses and individuals and has been producing accessible formats for over 125 years.  

Mark O’Donnell, Chief Executive of Sight Scotland, said: “We are so grateful to Lesley Kelly and Sandstone Press for allowing the Scottish Braille Press to transcribe and publish Lesley’s Health of Strangers series in braille, enabling us to give braille readers access to Lesley’s fantastic crime thriller series. It is extremely important for equality, inclusion and personal security that accessible formats, including braille, are easily and readily available to people who require them.” 

The Health of Strangers series braille editions are available to buy online at Sightscotland.org.uk through Sight Scotland’s Braille Bookshop, or call 0131 662 4445 to order. 

US Approves First New Alzheimer’s Drug In 20 Years

June 8, 2021

The first new treatment for Alzheimer’s disease for nearly 20 years has been approved by regulators in the United States, paving the way for its use in the UK.

Aducanumab targets the underlying cause of Alzheimer’s, the most common form of dementia, rather than its symptoms.

Charities have welcomed the news of a new therapy for the condition.

But scientists are divided over its potential impact because of uncertainty over the trial results.

At least 100,000 people in the UK with a mild form of the disease could be suitable for the drug if it were to be approved by the UK regulator.

The US Food and Drug Administration (FDA) said there was “substantial evidence that aducanumab reduces amyloid beta plaques in the brain” and that this “is reasonably likely to predict important benefits to patients”.

Controversial trial

In March 2019, late-stage international trials of aducanumab, involving about 3,000 patients, were halted when analysis showed the drug, given as a monthly infusion, was not better at slowing the deterioration of memory and thinking problems than a dummy drug.

But later that year, the US manufacturer Biogen analysed more data and concluded the drug did work, as long as it was given in higher doses. The company also said it significantly slowed cognitive decline.

Aducanumab targets amyloid, a protein that forms abnormal clumps in the brains of people with Alzheimer’s that can damage cells and trigger dementia, including:

  • memory and thinking problems
  • communication issues
  • confusion

‘Heading in right direction’

Aldo Ceresa, who took part in the trial, first noticed problems differentiating between left and right 10 years ago.

After his diagnosis, the 68-year-old, who is originally from Glasgow and now lives in Oxfordshire, close to his family, had to give up his job as a surgeon.

Mr Ceresa took aducanumab for two years before the trial was halted – and then had to wait almost as long for another trial, at the National Hospital for Neurology and Neurosurgery, in London, to begin.

“I’m quite happy to volunteer,” he says.

“I really, really enjoy this journey that I’m going through – and obviously the benefits I’m getting from it, which I’m very, very grateful for.”

He is convinced the drug has helped him.

“I feel like I’m not quite as confused. Although it’s still there, it’s not quite as bad.

“And I’m just getting that bit more confident now.”

Mr Ceresa says his family has noticed improvements too.

“Before, if I was going to get something, I couldn’t remember, you know, where to find things in the kitchen.

“That has become less of a problem,” he says.

“I haven’t caught up to the level that I was before – but I’m heading in the right direction.”

More than 30 million people around the world are thought to have Alzheimer’s, with most aged over 65.

For around 500,000 people affected in the UK, those eligible for aducanumab will be mostly in their 60s or 70s and at an early stage of the disease.

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‘Very cautious celebration’

Analysis box by Fergus Walsh, medical editor

We need to keep our feet on the ground.

This is not a miracle drug, nor a cure for Alzheimer’s but it is the first treatment which tackles the destructive mechanism in the brain that drives the destruction of neurons.

And that makes this a landmark moment.

But scientific opinion both here and the United States is divided. While some have welcomed approval, calling it a milestone for millions living with Alzheimer’s, others believe the drug will only have marginal benefits.

Alzheimer’s charities say they will be pressing for an early decision in the UK – but that could take another year.

Lastly, we don’t know how much aducanumab will cost – it could be tens of thousands of pounds per patient each year. And if approved, access will be limited to those who’ve had specialist brain scans to confirm their diagnosis.

Despite all the caveats, this is moment for very cautious celebration.

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Prof Bart De Strooper, director of the UK Dementia Research Institute, said the decision to approve aducanumab marked “a hugely significant milestone” in the search for treatments for Alzheimer’s disease.

In the past decade, more than 100 potential Alzheimer’s treatments have flopped.

But while he hoped it would prove a turning point for millions of people with the condition, he said there were “still many barriers to overcome”.

Prof John Hardy, professor of neuroscience at University College London, said: “We have to be clear that, at best, this is a drug with marginal benefit which will help only very carefully selected patients.”

‘Grave error’

And Prof Robert Howard, professor of old age psychiatry at UCL, went further calling the drug’s approval “a grave error” that could derail the ongoing search for meaningful dementia treatments “for a decade”.

He said the FDA had ignored data from the trial which showed no slowing of decline in cognition or function.

However, Alzheimer’s Society said the drug was “promising” but added it was “just the beginning of the road to new treatments for Alzheimer’s disease”.

Another charity, Alzheimer’s Research UK, said it had written to the Health Secretary Matt Hancock asking the government to prioritise the fast-track approval process for the drug in the UK.

Chief executive Hilary Evans, said: “People with dementia and their families have been waiting far too long for life-changing new treatments.

“It is now essential that regulatory authorities assess the evidence to decide whether they believe the drug is safe and effective for use in the UK.”

Although many doctors are doubtful of aducanumab’s benefits, its US approval could be a huge boost to dementia research, which is traditionally underfunded compared with cancer or heart disease.

Valentina Petrillo: ‘Better To Be A Slow Happy Woman Than A Fast Unhappy Man’

June 8, 2021

Valentina Petrillo could this year become the first openly transgender woman to compete at the Paralympics. For the visually impaired Italian, selection for the national squad would be a dream come true – but she says she understands why other athletes may have doubts and questions about racing against her.

“I’m happy as a woman and running as a woman is all I want. I couldn’t ask for more,” says Valentina Petrillo.

“I’ve got a fire inside me, that pushes me. An emotional strength. Obviously, my body’s not what it was at 20 when I was at my peak, but my happiness pushes me to go further, to go beyond my limits.”

Passionate about running from an early age, Petrillo’s aspirations were seemingly dashed at the age of 14, when she was diagnosed with Stargardt disease, a degenerative eye condition, for which there is no cure.

After finishing school in her hometown of Naples, she moved to Bologna at the age of 20 to study computer science at the Institute for the Blind. Here she took up sport again, becoming a member of Italy’s national five-a-side football team for people with sight loss.

It was only at the age of 41 that she finally started running again, winning 11 national titles in three years in the male T12 category for athletes with visual impairment.

She is now 47, and recognises that this is her last chance to compete at the Paralympics, but she wants to keep running whether she gets to Tokyo or not.

In fact, it was only last September that she ran her first official race as a female para-athlete – at the Italian Paralympics Championship, where she won gold in the 100m, 200m and 400m T12 events.

Growing up in Naples in the 1970s, Petrillo says she was a “streetwise kid” who often got into fist fights.

“I defended my brother who’s three years older than me! Until four years ago, if you’d talked to Fabrizio (the name Petrillo was given at birth), Fabrizio would have given you the idea he was sexist. He was a tough guy who’d speak dismissively of women and then be a woman in his private space.”

She clearly remembers the day when, aged nine, she put on her mother’s skirt for the first time, “It was an incredible emotion. It was like touching heaven with your finger tip,” she says.

But she knew better than to tell anyone; by coincidence, she had a transgender cousin, whom her uncle had thrown out of the house.

And so Valentina continued life, as she puts it, “dressing up as a man”.

She achieved everything society expected of her – good grades at school, a stable job, a wife, a son – but still she wasn’t happy.

There was no triggering event but on 14 July 2017, she realised she could no longer suppress her secret.

“I hadn’t planned it. I was in bed with my wife, about to fall asleep, and I said ‘Remember I told you I once dressed up as a woman?’ She said yes. I said, ‘In reality it wasn’t once, I do it every day.'”

With her wife’s support – after the initial shock – Valentina started living as a woman in 2018, and in January 2019 she began hormone therapy, which affected her physically and emotionally.

“My metabolism has changed. I’m not the energetic person I was. In the first months of transition I put on 10kg, I can’t eat the way I did before, I became anaemic, my haemoglobin is low, I’m always cold, I don’t have the same physical strength, my sleep isn’t what it was, I have mood swings,” she says.

“I’m not the same as before. Fabrizio no longer exists.”

Hormone therapy for trans women is designed to lower testosterone levels and raise oestrogen levels to the typical values in women.

Quantities of both hormones are measured in a unit called a mole. Before starting therapy, Petrillo would have had about 20 nanomoles of testosterone in a litre of her blood (20 billionths of a mole). Since 2015, the International Olympic Committee (IOC) has required female athletes to have less than five nanomoles of testosterone per litre of blood, while most women have fewer than two nanomoles per litre. Petrillo is now consistently well below the two-nanomoles-per-litre level.

Six months after starting treatment she had lost about 11 seconds in the 400m and 2.5 seconds in her speciality, the 200m. But it was a sacrifice she embraced.

“As a sportsperson, to accept that you won’t go as fast as before is difficult. I had to accept this compromise, because it is a compromise, for my happiness.”

It has become Petrillo’s motto: “Better to be a slow happy woman than a fast unhappy man.”

In reality, she is not slow, just slower, as her gold medals in last September’s Italian Paralympics championships attest.

She has also fared well in competition against non-disabled women, some of whom have protested that a trans woman has a major advantage.https://emp.bbc.co.uk/emp/SMPj/2.43.0/iframe.htmlmedia captionValentina Petrillo’s first competition with able-bodied women, in Arezzo, October 2020 ©Ethnos

Fausta Quilleri, a lawyer from Brescia and a runner in the over-35s “Master” category, last month sent a petition to the president of the Italian Athletics Federation and the ministries for Equal Opportunities and Sport challenging Petrillo’s right to compete in women’s races.

“Her physical superiority is so evident as to make competition unfair,” she says, arguing that the IOC’s exclusive focus on testosterone “makes no sense” when physique is also a factor.

More than 30 female Master athletes signed the petition.

“If she wants to run with us we would be happy for her to do so. We will always welcome her but we don’t want her to compete with us for titles,” Quilleri says.

Petrillo was hurt that some of the women at one event refused to be photographed with her, but says she understands their reaction.

“I asked myself, ‘Valentina, if you were a biological woman and had a Valentina, a trans, racing against you, how would you feel?’ And I gave myself answers – astonishment, confusion and doubt. I would have those things as a woman. So I believe these doubts and questions are legitimate.”

However, she defends her right to compete in the women’s category.

“I respect and comply with the IOC and World Athletics rules, I do the tests. I don’t feel like I’m stealing anything from anyone.”

presentational grey line

Running with limited vision

  • Until recently Petrillo was running in the Paralympic T12 category, where T stands for Track and 12 is one of three groups of visual impairment
  • In April she was reclassified as T13 – the group for runners with the least serious visual impairment – and has been competing this week at the European Para Athletics championship in the T13 400m event
  • Petrillo sometimes finds it hard to see painted lines on the track, especially after rain – her preference is for white lines on a blue track
  • When running against non-disabled runners, it’s a disadvantage being unable to see the finishing line, she says, as she doesn’t know when to make a final lunge

presentational grey line

Petrillo is taking part in studies led by Joanna Harper, at the School of Sport, Exercise and Health Sciences at the University of Loughborough in the UK, on the precise effects of hormone therapy on trans women athletes.

A transgender runner herself, Harper has been in the unique position of studying the effects of hormone therapy on athletic performance first hand.

“Transgender women are on average taller, bigger and stronger than cisgender women (women who identify with the sex and gender they were assigned at birth) even after hormone therapy, and those are advantages in many sports,” she says.

But there is another side to it, she points out.

“Transgender women are now powering their larger frames with reduced muscle mass and reduced aerobic capacity and that can lead to disadvantages in terms of things like quickness, recovery and endurance.”

It will take at least 10 more years of research to fully understand the effect of hormone therapy, Harper says. In some sports trans women will need a handicap, she suggests, but how much handicap isn’t yet clear.

“Hormone therapy won’t turn trans women into cis women but the goal, in terms of sports, is to mitigate the advantages that trans women gain by virtue of going through male puberty, to the point where you can have meaningful competition between trans women and cis women.”

Meaningful competition is the key to defining all sporting categories, starting with the division of men and women, says Harper, author of the book Sporting Gender. From tall basketball players to left-handed fencers, acceptable advantage exists in sports all the time. “What we don’t allow is overwhelming advantage, so we don’t let heavyweight boxers get in the ring with flyweight boxers,” she says.

“There are many people who don’t think that trans women should be allowed to compete at all, and then there are many other people who think that trans women should be allowed to compete simply based on gender identity. And I believe in a middle-ground policy, where we allow for inclusion of trans women but have restrictions that are based on the physiology of sport and the biology of sex.”

No openly transgender athlete has yet competed at the Olympics or Paralympics, but this year that looks likely to change. Weightlifter Laurel Hubbard, a trans woman like Petrillo, is in contention for a place in New Zealand’s Olympic squad. Canadian Ness Murby, who competed in discus throw at the 2016 Paralympics, also recently came out as a trans man, and has been selected for the Tokyo games.

An article by Outsports names other trans women hoping to compete at the Olympics, but Petrillo is the only potential trans woman Paralympian mentioned.

She describes her life today as a visually impaired transgender athlete as an arduous journey that is far from over, but she is keen to share her story.

“I think my example is positive, of a trans person who does a sport they love,” she says. “Maybe if I’d seen a Valentina on TV when I was an adolescent, my choices would have been different.”

This is why she agreed to have her story fully documented on film – 5 Nanomoles: The Olympic dream of a trans woman will be released next year. She says making the documentary has helped her to get through some of the darkest moments of her journey, and surprised her too.

“Valentina is enjoying making this film! She really is and I’d never have imagined it. This is another thing that Fabrizio would never have done: Fabrizio would never have spoken on TV, or given interviews, or put himself out there. But Valentina does.”

Parkinsons, AI And Rory Cellan-Jones

June 8, 2021

For two weeks recently I got into a steady routine. At 10:30 each morning, I would sit at my kitchen table, strap three devices containing sensors to my right arm, and switch on a tablet computer. Then I would spend 20 minutes going through a series of exercises monitored by a man who popped up in a window on the screen.

The results of my endeavours will, I hope, help millions of people like me dealing with Parkinson’s disease.

My daily routine was part of a medical trial run by engineers from Imperial College and a start-up company they have founded, in collaboration with a consultant neurologist at London’s Charing Cross Hospital. Its aim – to use artificial intelligence techniques to develop a wearable device that could monitor the symptoms of Parkinson’s disease and even perhaps help to treat it.

For me that is an exciting prospect. I was diagnosed with Parkinson’s in January 2019 and the first thing I was told was that there is no cure for this disease which afflicts something like 10 million people and is the world’s fastest growing neurological condition.

‘Notoriously difficult’

There is medication to treat the symptoms but it is notoriously difficult to prescribe exactly the right dose of Sinemet and other drugs which act to replace the missing dopamine that makes someone with Parkinson’s shake or drag their foot. In my case, it was not clear to me that the drugs were working.

That is how I ended up being sent by my own consultant at St Mary’s Hospital Paddington for a second opinion from Dr Yen Tai, the neurologist at Charing Cross working with Imperial College. After he had prescribed me a new drug, we got talking about technology and how it might help in the battle against Parkinson’s. When he offered to enrol me in the Imperial trial, I leaped at the chance.

The exercises I did each morning – twisting my hand from side to side, holding it out in front of me, moving my arm up and down – were similar to what my consultant makes me do on my visits every four months. The idea is that the data recorded by the sensors and the video of the session will gradually teach the AI system how to grade symptoms in the way a human doctor does.

Neurologists use what’s called the UPDRS – the Unified Parkinson’s Disease Rating Score – to calibrate the severity of a patient’s symptoms. Earlier in the trial, other patients of Dr Tai had been assessed by him at his clinic, and his UPDRS ratings were then fed into the AI system as part of its learning data.

Ravi Vaidyanathan, reader in biomechanics at Imperial College and principal investigator for this research programme, laughed when I said the aim seemed to be to take Dr Tai’s brain and put it in the AI. “We are a few light years from being able to take what Yen’s brain can do,” he said.” But we are trying to take his diagnostic capacity into the automated system. And that’s how machine learning works.”

The Imperial team is not alone in exploring how wearable devices could be used to diagnose and monitor Parkinson’s. “Wearable sensors are quite a popular hot topic in Parkinson’s research for a number of years now,” says Dr Tai. A team at Apple, working with medical specialists, showed how the Apple Watch could be used to monitor symptoms and measure their response to medication.

But the Imperial team believes their trial goes further than any other in collecting data about all of the main Parkinson’s symptoms – stiffness of the limbs, tremor and slowness of movement.

What is exciting is what comes next. Later this year, SERG Technologies, the spinout from Imperial working to commercialise this research, hopes to have something much less clunky – “a nice, lean simple device,” says Ravi Vaidyanathan.

‘Tailored treatment’

“At first this could be used once more to put patients through various exercises to assess their symptoms but later the idea is that it could just collect data as people went about their daily lives.

“So when you just pick up a cup of coffee, when you pick up a pencil, when you pick up a pen, we would have something that you could wear unobtrusively all day that would keep recording what you are doing.”

Coupled with data about when a patient takes their medicine, the smart device could then provide continuous monitoring of how a patient responded. “Hopefully this will provide a more personalised, more tailored treatment to an individual patient,” says Dr Tai.

Further ahead, the wearable device could actually provide treatment. A new project supported by a £1m grant from the National Institute of Health Research, will explore shooting tiny amounts of current into the patient’s muscle to control tremors.

For all the work being done here and around the world to improve the monitoring and treatment of Parkinson’s, there is still no cure on the horizon.

“Ultimately we still need to have something that can slow down the brain degeneration process,” Dr Tai says. “But it doesn’t mean we can’t optimise treatment at the same time while we are trying to find a cure for Parkinson’s.”

I hope to continue on this journey seeking a better understanding and improved treatment of Parkinson’s. I will report back on any progress.

 

BBC Radio 3 – My Deaf World series of radio Essays (14 to 18 June)

June 7, 2021

A press release:

 

Produced by Camilla Arnold and Sophie Allen for Flashing Lights Media

Executive Producer- Mark Rickards

A five-part series of essays that explores what it is like to be deaf in 21st century Britain. Each essayist has their own personal experience and take on what being part of the deaf community means to them. Some share the little-known divisions and politics of the deaf community and others share what makes the community so special and unique to the point where some deaf people consider themselves as a linguistic minority rather than disabled.

In a special approach to the usual format of the Essays on BBC Radio 3, three of the episodes are voiced by actors, while two of them are written and read in first person.

This series of essays is produced by Flashing Lights Media, a deaf-led television production company that aims to bridge the gap between the deaf community and the mainstream to break down cultural stereotypes and encourages new perspectives on the world around us.

Monday 14 June

Written by Abigail Gorman

Voiced by Natalia Campbell

Proud  activist, Abigail Gorman, takes a personal look at what it means to be deaf when most of society would prefer you not to be. She shares what it was like growing up in a deaf family who were proud of their deaf identity but why she struggled to embrace her deafness for a long time. Abigail tells us of the arguments she had with her Mum when she first decided to get a cochlear implant- her Mum saw getting a cochlear implant as a rejection of the deaf community- and how she has finally come to terms with her deaf identity while learning more about a concept called audism- which explores the different approaches in the deaf community between people who strive to hear language and use speech and those who are deaf and use sign language. Abigail ends the essay on why she is now proud to be deaf and how the deaf community is a linguistic minority. She affirms her new-found belief that deafness is not a disability but a cultural identity. 

Tuesday 15 June

Written by Robert Adam

Voiced by Ian Drysdale

Australian born academic Robert Adam takes us on a nostalgic journey through his early childhood and shares what it was like growing up in a family with deaf parents and siblings.   He explores the dichotomy of writing an essay for a medium that he’s never had access to- radio. Within this exploration, Robert also considers what his voice might sound like if he could hear and speak. Robert takes us on a trip down memory lane as he shares his childhood memories of realising that not everyone in the world were deaf, the mystery of how telephones work and his fond memories of the ‘Deaf Club’ that was the centre of the deaf community. He ends the essay on the thought that when people think of  being deaf as an isolating disability, they are not taking into account the rich, diverse and rounded cultural life that Robert and other members of the deaf community experience. .

Wednesday 16 June

Written and read by Teresa Garratty

Filmmaker Teresa Garratty gives us a frank and honest insight into what it was like to lose her hearing at the age of 18 and how she had to learn “how to be deaf”. There was no manual that she could read, no tutorial on You Tube with tips on how to cope with hearing loss. She discusses how her family and friends would express concerns about her getting involved in “that deaf world” as they saw the deaf community and its culture as alien.  Teresa decided to learn sign language so that she could join the deaf community,however, she  reveals how then she realised that sign language can be perceived differently within the  deaf community. Sign Language can be like currency- sometimes it’s the case of the more fluency you have the wealthier and more respected you become.

Thursday 17 June

Written by Sannah Gulamani

Voiced by Kaajel Patel

Sannah Gulamani, a Research Assistant at University College London, shares with us how the existence of deafness can actually be seen as a positive, and not a negative because of inventions such as subtitles and video calls. Sannah, because of navigating through a world of ‘can’ts’, decided to study music at university. But her love of music is often questioned by those who believe that music is preserved for those with a ‘good ear’. Sannah delves in deeper to discuss how her intersectional identities are often misunderstood, and what identity means in terms of belonging. Within this exploration, she examines her interest in the linguists of British Sign Language and what propelled the career shift from music to sign language linguistics. Finally, Sannah explores  whether it can be claimed that the deaf community is a space that is welcoming and safe for all deaf individuals? She looks into how racist and offensive signs are still being used as a result of white fragility and privilege.

Friday 18 June

Written and read by Sandy Deo

Sign Language Interpreter Sandy Deo brings a different experience to the Essay series, as she looks back at her cultural heritage and considers the realities, privileges and responsibilities of growing up as a child of a deaf adult – while not being deaf herself. She talks frankly about how she knew council and banking details from a young age because she had to interpret for her Mum but how this was an advantage as it meant that she was reading Matilda at the age of six.  Sandy tells us of funny anecdotes where she and her siblings would take advantage of having a deaf Mum but also talks honestly about the realities of having to interpret for her Mum at family events as other members didn’t know how to sign and how being her Mum’s ears means she now can’t sleep deeply because of years of training to listen out for any odd noises in the house. But Sandy ends the essay on how being a child of a deaf parent is an identity that she’ll proudly own as the experience has instilled in her a drive to fight for, and to stand up for those who perhaps need a louder voice.

For Carers Week, Revitalise highlight the importance of the nation’s carers as they transition out of pandemic

June 7, 2021

 

A press release:

 

 

This Monday 7th June marks the start of Carers Week 2021, a week dedicated to raising awareness of the extraordinary efforts and many challenges facing carers every day around the United Kingdom. Respite care providers Revitalise would like to highlight the fantastic work they do looking after the nation’s most vulnerable people.

There were 9.1m family carers in the UK at the start of lockdown, and it is estimated that a further 4.5 million have taken on caring responsibilities since the COVID-19 pandemic. Many are solely responsible for the wellbeing of a loved one who may rely on them completely, sometimes 24/7, without any form of break. During lockdown, Revitalise received calls from carers in desperate situations, some talking of self-harm, an inability to cope, and even suicide.

Revitalise CEO Jan Tregelles said: “The nation’s carers perform such a vital role in keeping the country running, saving the NHS millions every year and go far beyond the call of duty to provide for some of the country’s most vulnerable people. We owe them a debt of gratitude.

“We would like the carers of this country to know that Revitalise are here to give you a warm welcome at our centre, should you need a break or change of scenery.”    

Whilst caring can be a hugely rewarding experience, many carers often find it challenging to find time to look after themselves. Hilary cares for her son, Shaun, who is brain damaged after an accident in Ibiza when he was 19:

There’s no let up, no way forward, no support. It’s just…everything. I really need a break, for my mental health. It just feels like hotels and restaurants are opening up, but disabled people are left to the last, at the bottom of the pile.

I’m never, ever, going to give up on my son. Life is too short you know; you need to keep fighting.”

Tracy, cares for her son, Conor, who was born with Cerebral Palsy Quadriplegia with learning difficulties. She said:

“I am just drained physically. It’s a terrible feeling waking up and being tired. I’d like to see the Government live in my shoes for a week. I’m older now and I need a break, and Conor needs a break from me also, he doesn’t want to be wrapped round me. But also I’m no good when I’m exhausted.”

One recent Revitalise guest, Lani, stayed at Sandpipers during lockdown and described her time at the centre.

Lani said:

“Thank you so much for saving me. At home, I was lonely, stressed and depressed. I thought Sandpipers would be just what I needed and it was. The beautiful surroundings, late night talks, laughing until I cried all just about made lockdown bearable.”

During the pandemic, Revitalise launched their ‘Care for Carers’ campaign, with a fundraising initiative to raise £1 million to build a support fund for disabled people and their carers as they transition out of lockdown. The charity succeeded with help from members of the public and actors Rory Kinnear and Joanna Lumley.

Revitalise would like the nation’s disabled people and carers to know that the charity are able to offer specialised, round the clock care from their Sandpipers centre in Southport, Merseyside, for anyone who feels that they need a break.

To enquire about respite care support, please visit revitalise.org.uk To show your support for Revitalise and help them to provide subsidised care breaks during the pandemic, please go to: revitalise.org.uk/donate  

Remote Working Has Been Life-Changing For Disabled People, Don’t Take It Away Now

June 4, 2021

Tables blocking the road. Chairs over flat curbs. Gazebos built on accessible parking. The surge in street dining since lockdown eased in England has been great for businesses, but not so much for wheelchair users and people with mobility conditions, who report being unable to get around their home towns due to the new blockages.

Many of these people have been stuck indoors for up to a year shielding, and on their first taste of freedom are now being blocked from getting to the shops or pub. “All I want to do is go and meet my friends and have a pint,” said Katie Pennick, a campaigner and wheelchair user, recently on BBC Radio 4. It’s not your typical civil rights slogan but it characterises the crunch of so much disability politics: disabled people deserve the right to have a life like everyone else.

This sort of thoughtless planningwould be frustrating at any time, but it is all the more so as we come out of a period when disability inclusion was finally given attention. At the start of the first lockdown, I reported that society was opening up to millions of disabled and chronically ill people as “virtual living” became the norm – from Zoom job interviews and streamed gigs and theatre to NHS phone appointments. But just as it took the non-disabled public to experience a dose of what disabled people have for years before access was improved, the fear is that any gains made during the pandemic will be discarded now that the wider public no longer need them themselves.

Take work for example. The shift to working at home over the past year brought new opportunities to those previously excluded from the workforce. As one woman with agoraphobia told me: “Lockdown has opened my world” – it allowed her to get a job from her front room. But as ministers and some employers push for a return to the office, many disabled workers are worried their hard-won progress will go backwards.A research scientist with endometriosis and IBS told me her employer has already stopped letting her work from home full-time, even though her job can be done remotely. “The office is ‘going back to normal’ and they don’t want us at home even though I can do a better job [here],” she said.Advertisement

The disability employment gap in the UK is vast – in 2020, the employment rate for disabled people was just 53.7%, compared with 82% for non-disabled people – and has been largely stagnant for years. Retaining flexible working is one way to address it.Such working patterns will help many others beyond disabled workers, from working parents to carers of elderly parents. Rather than being reduced in coming months, these schemes should be extended; a survey by the Chartered Institute of Personnel and Development found that almost half of workers currently don’t have flexible working arrangements such as flexitime, part-time hours or job shares.

Or look at socialising. The Zoom pub quiz became a cliche of lockdown, but what many of us did informally with friends was also replicated by companies, with art exhibitions streaming online or bars running virtual club nights. As venues open back up, I’m hearing from scores of disabled people losing out: from the parishioner whose church’s Zoom coffee morning allowed her to speak to people from her congregation for the first time in 15 years but which has now been stopped, to the person who “went” to an LGBTQ+ club night for the first time in their life when it went online during lockdown but has now watched it close.Covid made politicians look at our miserly benefits. But is £20 the best they can do?

 

Too often, cultural prejudice around disability assumes disabled people don’t need the same pleasures as everyone else, but health doesn’t change who you are. As one music-loving young housebound woman shared on Twitter: “Magically, over the past year I’ve seen countless live gigs and the thought of that being taken away is devastating.”

It doesn’t have to be this way. The Young Vic theatre in London announced in May that it plans to livestream all of its future productions, and gym companies say online workouts are here to stay, despite the popular return of “in person” classes. This doesn’t mean good access is about moving everything online: many disabled people want face-to-face settings, and besides, the surge in virtual experiences shouldn’t let businesses off the hook from adapting physical spaces which are still too often inaccessible. It simply means that it is right to keep the option, and that we need a culture in which companies think about disabled people – and our cash – as valuable.

As we rightly celebrate a return to normal, it should be remembered that, for disabled people, “normal” too often means being excluded from everyday life. Anyone who has felt the pang of missing nights with mates in the pub over the past year can empathise and support disabled people being restricted and isolated now. If you spot a restaurant blocking a wheelchair entrance, tweet a photo and tag your local council. If your employer is rolling back flexible working rights, talk to your union (or join one).

Attempts to gain access for disabled people are often met with pushback: it’s too much trouble, too expensive or simply unnecessary. And yet lockdown showed that sweeping changes can be made practically overnight with little fuss. The question is, if it was done for non-disabled people then, why not disabled people now?

Face-To-Face Assessments To Be The Norm Again For PIP And WCA

June 3, 2021

With many thanks to Benefits And Work.

 

A DWP minister has indicated that face-to-face assessments will once again become the norm for both PIP and the WCA, though there will continue to be some telephone and video and assessments.

Justin Tomlinson, minister for disability, health and work told the commons work and pensions committee earlier this month that the pandemic had a severe effect on assessments, beginning with the closure of assessment centres.

First of all, we had to close down all our assessment centres. We then had to scale up telephone and video assessments, which we have never done before and, but for Covid, would have only been looking to discuss them in the Green Paper, let alone do a pilot. We then had to roll this out nationwide, literally in days. Again, we were using our stakeholders to let us know whether it was working. So far there has been very positive feedback.

A large number of assessors then moved on to COVID related jobs.

We also lost our health professionals. They all have at least two years’ health professional background so were at the front of the queue for the NHS’s rallying of secondment for Test and Trace, the vaccination roll-out and the immediate support in hospitals when there were the high levels of Covid infections in hospitals. That impacted massively on our capacity.

However, Tomlinson says that the system is now returning to normality, with WCA assessments resuming and face to face assessments returning for both the WCA and PIP.

As issues like this came up, we were able to respond and we are returning to normality on capacity issues. The WCA assessments will begin shortly and start to be scaled back up, as in face to face, and PIP will follow a few weeks later. However, we will keep video and telephone assessments. Through the health and disability Green Paper, we will explore to what extent and where they are best to be used.

It is not clear what proportion of assessments will continue to be by telephone and how many will be face to face, though we have yet to hear from anyone who has had a video assessment, so it is likely that these are likely to form a very small proportion of assessments at this stage.

 

 

Tetraplegic Steven Webb Is Elected Mayor Of Truro

June 2, 2021

One night when he was 18, Steven Webb dived into an open air swimming pool and his life changed forever. He hit his head on the bottom of the pool and was paralysed from the neck down. Now aged 48, he has been elected mayor of his home city. This is his journey from rock bottom to a place where he hopes to help others, as told to Miles Davis.

It was a Sunday night, 1 September 1991. I know it was 10:31 because I looked at my watch just before I dived into the pool.

It was an open air pool at Truro School. We were trespassing but we’d done it lots of times before.

I dived in off the top of the wall at the deep end like I had done many times. This time I hit the bottom with my head and a massive shock went through my body.

I tried to swim to the surface but I couldn’t move my arms. I couldn’t swim anywhere. I started to run out of breath and panicked then my friends swam down and pulled me to the surface.

‘I’ll never walk again’

I had broken my fifth cervical bone and it went right through my spinal cord. I spent 12 months in hospital.

I had to have a tube in my throat but it went badly and meant I couldn’t speak for several months.

I could only communicate through tapping – once for yes, twice for no.

I knew I was paralysed but still thought I would walk out of there.

Then the doctors came and said I would probably never walk again. They were telling me how complicated my life was going to become.

I came home to a different life. It ages you, I suppose, spiritually.

Much of my life I subconsciously had so much shame about my accident.

I was a dumb-ass who dived off a wall – I created my disability.

People said I was a hero and an inspiration but I felt like an idiot.

Now I realise what’s important is not what happens to you, it’s what you do with it.

People often say to me: “Imagine what you would have achieved if you hadn’t broken your neck.”

The question makes me laugh. I broke my neck and there is no alternative.

I wouldn’t spend any time thinking of a rose-tinted version of a better life.

‘Single and paralysed’

I met my then partner Emma in my late 20s and she moved in with her four-year-old daughter, Kember.

We were together for about 10 years and after we ended I met someone else.

But that went wrong suddenly, without warning, just before I turned 40.

I ended up sitting in a shop doorway with my wheelchair broken down and I realised my life was on a downward spiral.

There I was – single, no money and paralysed.

I was drinking every night to get to sleep because my brain just wouldn’t stop.

I could see where I was headed to and it wasn’t a place I wanted to go.

‘Then I started to read’


When I was at rock bottom I had a dark night of the soul and realised I was just existing.

People think being paralysed is the worst thing in life but there is nothing worse than having nothing to live for. Being asleep was the only time when I wasn’t suffering.

One night I started to read. I read ‘As a Man Thinketh’ by James Allen. Then instead of the drink I fell asleep reading.

I started meditating and saw my thoughts as transient, non-permanent and not me. That was the beginning of the end of my suffering.

I realised I needed to help others not to suffer and I started doing Facebook live sessions to help people to meditate.

‘That gave me the courage’

I have always had an interest in politics and had been a Liberal Democrat since I was a teenager.

In 2017 the party asked me if I would stand for Truro City Council and I got elected.

A few weeks ago I was unanimously voted in as mayor and that gave me the courage to say ‘I can do this.’

So here I am, mayor – it’s an incredible honour and an amazing opportunity.

I chose Kember as mayoress as she has always been hugely supportive of me and I’m very proud of her.

We’re very, very close and she took my surname about 10 years ago.

‘Rebuild together’

I’m trying to work out how to use my platform to help others to suffer less.

In a time where clinically vulnerable people have had to isolate for so long, I see it as an opportunity to make sure there are no groups left behind and we rebuild from the pandemic together.

There are so many people who have self-isolated and have hardly left their flats.

We’ve got to make sure everybody is included – that will help businesses, that will help Truro and that will reduce suffering.

It’s time we had a vision to keep the amazing heritage of cobbled streets and granite pavements but make it open to everybody.

I’m now able to contribute to that as the mayor. Boy, do I feel alive right now.

If you are looking for advice about disability, the BBC’s Action Line has a few pages to start you on your journey.

Man With Speech Aid Uses New Yorkshire Accent After Appeal

June 2, 2021

A man who appealed for Yorkshire voices to replace his American-sounding speech aid has spoken with his new accent.

Richie Cottingham, who has cerebral palsy, asked people to come forward to add their voices to his computer.

More than 35 people recorded their voices for the 26-year-old, who lives near Howden, East Yorkshire, with three chosen accents being blended together.

Speaking in his new accent, he said he had cried when he first used the voice, adding: “Now I am a Yorkshireman”.

Mr Cottingham launched his appeal earlier this year, hoping to find men in their early-20s with a subtle East Yorkshire accent.

He said he wanted to have his own voice after his speech aid “sounded American”. He said: “A generic voice is not my identity.”

Using his new accent, he added: “It feels awesome and I love it.

“Everyone has been really excited. I think it will take people time to get used to hearing the new me.”

‘Happy tears’

Jake Thompson, who recorded his voice for Mr Cottingham to consider, said he wanted to help out because it would be “a lovely thing to do”.

He added: “It’s something we all take for granted to speak and all have our own accents and voices.”

Mr Cottingham thanked the dozens of people who came forward to volunteer their voices before using a mix of three people to create his own, unique accent.

“It made me cry on Tuesday when I heard it for the first time. Many happy tears,” he added.

Gene Therapy Is A Game Changer For SMA

June 1, 2021

Baby Arthur is just five months old. He has no way of knowing the treatment he is receiving in his right arm is the world’s most costly medicine.

He has a devastating progressive disorder that causes loss of muscle control – but has become one of the first patients to be treated on the NHS with Zolgensma, a gene therapy.

Around 40 children are born with the most severe form of Spinal Muscular Atrophy (SMA) every year.

Untreated, they rarely live beyond two.

Zolgensma, manufactured by Novartis Gene Therapies, has a list price of £1.795m.

But the NHS has negotiated a confidential discount which means dozens of infants can be treated each year.

Arthur, from south-east London, finds it difficult to move his arms and legs and cannot lift his head, so some permanent damage has already been done.

The hope is the one-off treatment will stabilise his condition and prevent further deterioration.

His father, Reece Morgan, says there have been many ups and downs.

“Our hope is that he can have the best possible life in terms of his movement,” he says. “We don’t know, but we’re just going to try as best as we can to give him everything he possibly needs.”

So how does Zolgensma work ?

The drug contains a healthy copy of a missing or faulty gene called SMN1.

This is inserted into a harmless virus.

In the body, the virus delivers the replacement gene into the nucleus of motor neuron cells.

This is essential to prevent the cells from gradually dying.

The now healthy motor neuron cells start producing the missing SMN protein which is vital for muscle function.

‘Hugely important step’

Evelina Children’s Hospital, where Arthur is being treated, is one of a handful of centres which will be offering Zolgensma.

Dr Elizabeth Wraige, a consultant paediatric neurologist at the hospital, explains that this treatment can really alter the outlook for these children.

“Twenty years ago a baby born with SMA would have a very shortened life expectancy, ” she tells the BBC.

“Now, we have the potential to enable children to acquire motor skills such as rolling and sitting and even standing walking, that would have been impossible without treatment for SMA.”

NHS England chief executive Sir Simon Stevens says it is “fantastic news that this revolutionary treatment is now available for babies and children like Arthur on the NHS”.

He adds that Zolgensma is among the “life-changing therapies” being “routinely” used by the health service.

Sally-Anne Tsangarides, general manager at Novartis Gene Therapies in the UK, calls it a “hugely important step for babies in England”.

“We thank all those who have been involved in the landmark agreement that has made it possible,” she says.

Despite the high list price, both NICE and the Scottish Medicines Consortium recommended the NHS fund the treatment.

Trials have shown it produces lasting benefits, which endure at least five years, and perhaps will prove to be permanent.

The only other treatment for SMA involves costly spinal infusions which need to be given at least three times a year.

‘It saved her life’

Tora, from south-west London, first displayed symptoms when she was around three months old – struggling to lift her head when lying on her tummy.

By the time Tora began treatment with Zolgensma in the US when she was 10 months old, her mum, Taisya Usova, says she was floppy and didn’t have any mobility.

“She couldn’t do the basic things. She couldn’t reach for a toy, which was five centimetres away. We couldn’t leave her alone, Even on the sofa, where she was all surrounded by cushions and pillows because everything was too dangerous,” she says. “We couldn’t relax for a second, and she couldn’t enjoy her life.”

Now aged two years and eight months, Tora is an inquisitive little girl who speaks three languages and can walk a little with the help of her parents.

“If she’s just sitting on the sofa you would never notice that something is not quite right,” Taisya explains.

“It saved her life, and basically she now has a chance to enjoy her life and to do things that are so basic and simple for any other child but for her it would be absolutely impossible. To go to the playground, to go on a swing, or to hold and read a book.”

Rajdeep Patgiri, Tora’s Dad, says the family now feels positive.

“Before we were afraid of what the next day would bring,” he says. “We were always afraid that she would lose some skills – deteriorate in her swallowing, in her breathing. Now we look forward with optimism that tomorrow something good will happen.”

How common is SMA?

Around one in 50 people carry the faulty gene for SMA, and the condition affects approximately one in every 10,000 births.

It is the most common genetic cause of death in childhood.

SMA is a condition where the clock is ticking from the moment a baby is born. Every week that passes where they are untreated, risks further damage to the nerve fibres and can make the difference between a child being able to walk or run or sit unaided.

It is usually spotted when babies are around three months old and they start failing to meet the usual milestones like kicking their legs or holding their heads up.

But by then, permanent damage will have been done to motor neuron cells.

For families who have already had an affected child, prenatal screening is offered.

This has enabled babies to be given Zolgensma within a few days of birth, long before symptoms appear.

This can mean their muscles develop normally and they suffer no movement problems.

UK must ‘catch up’

Patient groups and doctors treating SMA want the condition to be added to the newborn screening programme. All babies are given a heel prick blood test which can pick up nine conditions like sickle cell disease and cystic fibrosis.

“We need newborn screening for SMA to be introduced in the UK so that our children have this opportunity for their futures,” charity SMA UK tells the BBC.

“The earlier Zolgensma is given for SMA the better, with pre-symptomatic treatment shown to give the very best possible outcomes. Early diagnosis and treatment is vital.”

Nickie Aiken, Conservative MP for the Cities of London and Westminster says the UK is lagging behind many of our European neighbours and the world.

“It’s a disgrace. Our newborn screening programme needs to expand and catch up urgently with the likes of Poland, Hungary and America so that we can identify diseases early and our children get the treatment they need. We have the means to test for these conditions and we have the treatments – by not screening for them we are doing wrong by our children, and they risk becoming the sick children of Europe.”

Fewer Disability Assessments, More Recordings, More Free Advocacy On The Way, Minister Claims

June 1, 2021

With many thanks to Benefits And Work.

A government minister has claimed that in the future there will be fewer and shorter assessments for disability benefits, more access to specialist assessors, audio recording of all assessments, more mandatory reconsideration success for claimants and more access to free advocacy services.

DWP minister Justin Tomlinson, gave evidence to the Commons Work and Pensions committee earlier this month.

Fewer assessments
He told them that “as part of the health and disability Green Paper, we want to explore the principle of removing unnecessary assessments.”

One way of doing this, he explained, would be to ensure that where a claimant gets an award from a tribunal, the length of their award should be extended to take into account the fact that the tribunal had access to recent evidence. At present, it can take so long to get to a hearing that claimants can find themselves filling out a review form shortly after a tribunal victory.

In addition, Tomlinson talked about ‘triaging’ as a way of reducing the number of full assessments that some claimants have to endure.

There is also the principle of triaging. Pre-Covid, if I had received your written evidence at the beginning, then I could be 95% certain of what award I am going to give you or what level of support, but because I am missing 5% the only option to me was to trigger a full assessment. During Covid, because we had such limited capacity, we then started doing triaging where we said, “We know 95%, so let us now have a telephone assessment, or even just a telephone conversation, to get that final 5%.” In my preconsultation, triaging is very popular with stakeholders. It is also very popular with assessors, who say, “There is nothing more soul destroying than knowing I have to ask 55 questions, which I already know the answers to, to get to the very last question at the end of this one-hour assessment.”

Telephone and video assessments to stay
Tomlinson said that telephone and video assessment are likely to be here to stay.

We then rolled forward the telephone and video assessments. We are very encouraged by how they have been received by claimants and we will be exploring further in the Green Paper how they can become a permanent part of the mix of assessment options. Certainly, they will continue as we return to normality.

Specialist assessors
He claimed that one advantage of being able to have telephone and video assessments as well as face-to-face is that it would be possible to have specialist assessors carry out the assessment for people with some conditions:

“. . . by having a menu of telephone and video assessments, we can explore, for the first time, having more specialist assessors. If you are not physically restricted to your nearby physical assessment centre, then we may be able to explore, for some conditions, a more specialist type of assessment.”

Mandatory reconsideration successes
The minister claimed that phone calls to claimants at the mandatory reconsideration stage had led to an increase in the number of decisions being changed in favour of claimants from 21% up to 44%.

We have also brought in holistic decision making at the monetary consideration stage, where for the first time—and again this goes to the core of trust—we will phone a claimant and say, “Tell us in your own words why you think we have made the wrong decision.” Sometimes that is enough, and sometimes that identifies what will ultimately be the additional evidence that is needed and we then help them gather that. To put this into context, making these changes about six months before Covid, 21% of decisions were overturned at appeal at the monetary consideration stage. That had moved up to around 44%. With Covid—we are not in normal circumstances—as we return to normality, I expect that to go higher yet.

Free advocacy
In spite of the massive cuts to support for the voluntary sector and to legal aid, Tomlinson claims to be in favour of more access to free advocacy. He points out that some people already have friends, family or charities that can advocate for them, but goes on to say:

There is also a “other” cohort of people who may not have advocacy support. It could be somebody with health or disability but, for example, if you are an ex-offender, if you are a care leaver into a new community, you do not necessarily have established advocate support. Can we evolve the help-to-claim scheme? We currently provide about £42 million a year to Citizens Advice as a trusted independent agency. Can we evolve that scheme so that they can provide that advocacy support? That can help in the application processes, explaining the system.

Recording assessments
The idea that all assessments should be recorded as a matter of course appears to be gaining ground, if the minister is to be believed.

We are committed to providing audio recording, as a given. At the moment you can get it but you have to bring your own equipment and provide a copy for somebody else. We also had a stakeholder request for video recording. We piloted that and it transpired that almost nobody wanted it. It is likely that it will be audio. We have also, because of the telephone and video assessments, started to do some audio recording on that. Our plan is that audio recording will become a given because, you are absolutely right, when you are reviewing a decision, to have that to go back to is helpful for claimants and the people doing the review

Too good to be true
If everything the minister is promising comes to pass then it should lead to at least a small level of improvement for claimants of disability benefits.

But we have heard talk like this before. So, we suspect many claimants will wait to see what the green paper says and, much more importantly, what the government actually does, before they start throwing their hats in the air.

Model’s Call For Bowel Illnesses To Be NHS Priority

May 28, 2021

A woman who nearly died when her Crohn’s disease was misdiagnosed as anorexia is calling for bowel illnesses to be made an NHS priority as cases rise.

Natalie-Amber Freegard, 29, said her GP was convinced her weight loss was due to an eating disorder until she collapsed in 2017.

Her parents were told to prepare for the worst as she went blind, had sepsis and kidney failure.

NHS England has been asked to comment.

A recent report by IBD UK suggests a lack of resources and late diagnosis is putting patients at risk and costing the NHS millions.

Ms Freegard, from Swindon, said: “If doctors even suspect it, they need to give us that colonoscopy straight away because it can be the difference between life and death.

“The fact that they’re still managing to misdiagnose people is not okay.”

The model said she had requested to be tested for Crohn’s as her cousin also has the disease.

It was only after being admitted to Great Western Hospital in Swindon in 2017 and undergoing two emergency surgeries in two days that she was diagnosed.

“My parents were told I wasn’t going to make it,” she recalled.

She ended up with a stoma, which was removed a year later.

Now she is joining calls from 17 national medical associations for faster diagnosis of the chronic illness.

Professor Bhupinder Sandhu, a consultant paediatrician and gastroenterologist at Bristol Children’s Hospital, told the BBC cases of inflammatory bowel disease in children have tripled in 20 years in the South West.

She said: “It’s a big burden for young people particularly and if they’re not caught early they can suffer.”

Half a million people in Britain live with Crohn’s disease or ulcerative colitis, life-long autoimmune diseases which affect the colon.

The national research from IBD UK, a coalition of leading health specialists in Crohn’s and colitis care, showed many patients are waiting more than a year for their diagnosis.

Ms Freegard now raises awareness of people living with IBD, modelling her scars with pride with an agency celebrating people with visible differences and on her own Instagram page.

“It’s nothing to be ashamed of”, she said.

“A lot of young people are so embarrassed because it’s poo.

“But we all poo, it shouldn’t be a taboo subject. We need to break that stigma of thinking it’s something to be embarrassed about.”

Sarah Sleet, CEO at Crohn’s and Colitis UK and chairwoman of IBD UK, said: “Crohn’s and colitis are serious conditions which aren’t taken seriously.

“They cost the NHS as much as cancer and heart disease for each patient, and can be as devastating, but they lag behind in the recognition and support needed to improve lives.”

Rising case numbers

Prof Sandhu, who is a co-founder of the British Society of Paediatric Gastroenterology, Hepatology and Nutrition, said more resources are urgently needed to keep up with the rising case numbers.

She said: “It needs to be centrally funded so there’s allocated money.

“It’s an increasing problem and there’s no allowance made for that so centres are having to cope with the extra numbers without any extra funding.”

Ms Freegard said the situation had been exacerbated by the coronavirus pandemic.

Many IBD patients take immunosuppressant medication and have had to shield for the past 18 months.

“Flare-ups can be (brought on) through stress and we’re being told as IBD patients we can’t do this, we can’t do that. The pandemic has made it a lot worse,” she said.

“We have two nurses and one in training for the whole of however many people in Wiltshire have IBD. It’s just not enough.”

Housing Black, Asian And Disabled Tenants ‘More Likely To Face Housing Discrimination’

May 28, 2021

Black, Asian and disabled tenants are disproportionately likely to face discrimination looking for a home, and to end up inhabiting shoddy, unsafe and unsuitable accommodation, according to the housing charity Shelter.

Its survey of 13,000 people’s housing experiences suggests that overall 17.5 million people are affected by what the charity calls the “housing emergency” – meaning they live in housing that is substandard or hazardous, unaffordable, or unfit for their needs.

High housing costs – and the failure of housing allowances to keep pace with rents – meant that for a fifth of people housing was a source of stress, while 14% admitted they cut back on food or fuel to prioritise paying the rent or mortgage.

Shelter said the pandemic had shone a stark light on the state of Britain’s housing, with poverty and poor and overcrowded accommodation recognised as a key factor in many areas where Covid infections and deaths were highest.https://interactive.guim.co.uk/charts/embed/may/2021-05-25T16:54:19/embed.html

Structural racism and discrimination mean black, Asian, and disabled people, gay people, people on low incomes and single parents are overwhelmingly more likely to experience poor and inadequate housing, the charity said.

As well as being more likely to be on low incomes, racial minorities were more likely to be offered poorer homes or “steered” into certain neighbourhoods, Shelter said. So-called “No DSS” discrimination and the ineligibility of some migrant workers for housing support further diminished the housing chances of marginalised groups.

Shelter’s survey found:

  • Black and Asian people were almost five times more likely to experience discrimination when looking for a safe, secure and affordable home than white people (14% versus 3%). More than one in 10 disabled people, and 7% of those earning under £20,000 a year, found it hard to find a safe and secure home.
  • Twelve per cent of black people and 14% of Asian people reported safety hazards in their homes, such as faulty wiring and fire risks – compared with 6% of white people. Fourteen per cent of black people and 16% of Asian people reported living in a property with significant defects with walls or roof, compared with 8% of white people.
  • Overall, 56% of black people were affected by the housing emergency, compared with 49% of Asian people and 33% of white people. More than half (54%) of disabled people were affected (compared with 30% of non-disabled people) and 58% of single parents.

Polly Neate, the chief executive of Shelter, said: “Decades of neglect have left Britain’s housing system on its knees. A safe home is everything, yet millions don’t have one. Lives are being ruined by benefit cuts, blatant discrimination and the total failure to build social homes.”Advertisementhttps://d4a80180f272b5ac94a9163294a40bf0.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Despite big changes in the housing market in recent decades – 11 million people now rent in the private rented sector, twice as many as 20 years ago – housing laws have changed little since the 1980s, trapping many in a series of short-term private lets and creating a “permanent state of stress and instability” for many tenants, Shelter said.

Not only were an estimated 1.5 million people bringing up children in the private rented sector – twice as many as 15 years ago – but hundreds of thousands of older people were likely to be renting privately in years to come, “facing unaffordable rent increases at a time when most owner-occupiers are starting to be mortgage-free”.

Shelter is calling for 90,000 social homes to be built every year to stem the crisis of affordability and to cut the estimated 1 million people on council waiting lists.

A Ministry of Housing, Communities and Local Government spokesperson said: “We’re providing over £750m this year alone to tackle homelessness and rough sleeping and are investing over £12bn in affordable housing.”

Winterbourne View: Families Demand Overhaul Of ‘Broken’ Care System

May 27, 2021

Families of patients held in the Winterbourne View Hospital have written to the prime minister demanding better care for adults with learning disabilities.

The abuse of patients at the assessment and treatment unit near Hambrook, Bristol, was exposed by BBC Panorama 10 years ago this month.

The families said “countless” others have suffered “trauma” in the system.

Mencap said the lack of change in the last decade was “deplorable”.

Eleven of the hospital’s staff were prosecuted, but seven relatives of people who were housed there claim abuse in similar facilities continues.

Research by Mencap and the Challenging Behaviour Foundation (CBF) shows 2,040 people with autism or learning disabilities are being held in assessment and treatment units.

The units are meant for short-term treatment but patients are held for an average of more than five-and-a-half years.

The charities said 355 people were in assessment and treatment units for more than 10 years.

In their letter to Boris Johnson, the families said: “Not even the exposure in the media of their torture has been sufficient motivation for government and the NHS to change a broken system.”

The families said they want to see the number of units cut and money ploughed into social services and residential care to allow people to live semi-independently.

“For the sake of our family members, and all others facing this system today, the change must happen,” they said.

Ann Earley, mother to Simon, now 47, who was at the hospital between 2010 and 2011, said: “The dangers have been exposed, the failures noted, the appalling damage catalogued, but still decision-makers and commissioners condemn our loved ones to a life of misery.”

Edel Harris, Mencap’s chief executive, said: “For people and their families to have been through such horrors and for so little to have changed is deplorable.

“We cannot tolerate a situation where more people are locked up simply because they cannot access appropriate support in their community.”

Vivien Cooper OBE, chief executive of the CBF, said: “Think what can be achieved in 10 years – then consider how little has changed for so many people with learning disabilities and autistic people.”

The Department for Health and Social Care has been approached for comment.

Stephen Hawking’s Papers To Be Saved For The Nation

May 27, 2021

Prof Stephen Hawking’s scientific papers and personal possessions are to be saved for the nation.

The objects include childhood letters, scripts from his TV appearances and Prof Hawking’s ground-breaking research into black holes.

The 10,000-page archive will be kept in perpetuity at Cambridge University library.

His office will be reconstructed in the Science Museum next year and selected highlights will go on display.

Prof Hawking’s son, Tim, said that the family was delighted that his body of work and memories of his life were being safeguarded for future generations.

“Our father would be really pleased,” he said. “It was really important during his lifetime that science be opened up to the widest possible number of people and be democratized and not be the preserve of the elite few.”

The early years

The collection encompasses Prof Hawking’s personal and professional life. Particularly touching is a letter by Hawking to his father on family-headed notepaper that was written when the future professor was six years old.

In child-like lettering, with several crossings out, the young Stephen tells his father a story about pirates loading treasure. He signs off with hugs and kisses.

Tim Hawking saw the note for the first time only recently.

“I would write my dad letters along those lines,” he reminisces fondly. “It was quite nice to see it being passed along the generations and appreciating that he had a loving relationship with his dad, as I did when I was (that) age. It shows a tenderness in his relationship with his father which I hadn’t fully understood until now.”

Prof Hawking was a prolific letter writer. He communicated with popes, US presidents and Nobel laureates.

The letters, however, show his handwriting deteriorating after a diagnosis of motor neurone disease in 1963. Its progression is captured by the increasingly misshapen letters and inkblots on the page.

TV scripts

Prof Hawking made an immense contribution to science. But his status as the world’s most famous scientist was partly because of his appearances on popular TV programmes such as Star Trek and Big Bang Theory. Among the archive is Hawking’s personal script from his first appearance on the Simpsons, in 1999.

In the episode, Prof Hawking and Homer Simpson go to Moe’s Tavern for a drink. Prof Hawking becomes intrigued by Homer’s theory of a “doughnut-shaped Universe” and wonders if he can steal it. Homer imitates him, in an attempt to make him pay the bar bill and gets punched by a boxing glove on a spring, concealed in Prof Hawking’s wheelchair.

Dr Jessica Gardner, who is Cambridge University’s director of library services said the scripts reflect an important aspect of Prof Hawking’s contribution to the communication of science.

“He had an enormous sense of humour. He was willing to be in the Simpsons, to let fun be taken, if what that did was to help communicate science and help people get excited about it,” she explained.

To have these scripts shows the celebrity part of his life, but also that he was determined to break down the barriers to science.”

Scientific papers

The star attraction for historians will be Prof Hawking’s research papers and correspondence with his collaborators. They are a record of how his unique mind worked, cataloguing corrections and changes in his ideas over time.

Prof Paul Shellard, who worked with him at Cambridge University, said that the collection of papers had a profound influence on our understanding of space-time and the Universe.

“It’s a wonderful thing that historians of science can get an idea of how Stephen thought about these problems,” Prof Shellard explained. “He saw further than others and I hope that (his) intuition and way of thinking will come through in the archive and be remembered in perpetuity.”

The collection contains a glowing letter, from Prof Hawking’s PhD supervisor, to the 22-year-old budding researcher’s dad, Frank.

“It is such a pleasure to supervise him,” writes Prof Denis Sciama, a noted physicist at the time who is credited as a father of modern cosmology. “Indeed, I’m at a stage… that I am learning from him”.

Accompanying a seminal 1974 scientific paper, on how black holes are not completely black, is a cover letter to the editor of one of the world’s leading scientific journals, Nature. In it we see a confident, if not downright cocky young man, in little doubt about the importance of his research paper.

Hawking’s office

The contents of Prof Hawking’s office, including his custom-built wheelchairs, communications equipment, and office furniture, will be transferred to the Science Museum. According to the museum’s director, Sir Ian Blatchford, although rooms of decorative or artistic interest are often kept for posterity, spaces relevant to scientific discovery are rarely saved.

“By preserving Hawking’s office, future generations will be able to delve deep into the world of a leading theoretical physicist who defied the laws of medicine to rewrite the laws of physics and touch the heart of millions,” Sir Ian said.

“These remarkable items might even inspire the next Hawking to wonder about the world around us.”

Ryan O’Connell: ‘I Was Born Into An Ableist Hellhole’

May 27, 2021

The frank, fizzy comedy Special, which has just landed on Netflix, is a tale of two Ryans. There is Ryan Hayes, the main character, a gay intern with cerebral palsy who lives in Los Angeles with his mollycoddling mother. Then there is Ryan O’Connell, the show’s star and creator, who is also a gay Angelino with cerebral palsy. But there the similarities end. Moments from O’Connell’s life resurface on screen, such as the time he was hit by a car then pretended to his new college friends that his limp was a result of the accident. (Season one ends with Ryan coming out as disabled.) But whereas Ryan is gauche and apologetic, his 34-year-old creator is almost intimidatingly sassy and self-possessed.

Talking over Zoom from his home, O’Connell speaks at the speed, and in the style, of Twitter. Anyone who read the tell-all blogs he wrote in his 20s, or his memoir I’m Special: And Other Lies We Tell Ourselves (from which Special is adapted), will recognise the exuberant voice. Song lyrics and invisible exclamation marks litter his conversation, while acronyms and punctuation are verbalised: “LOL”, “Dot-dot-dot.” He’s like the internet personified, but with none of the spite.Advertisementhttps://641e2f37e98ed72d1fe64587b2742656.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

“Ryan still lives with his mum, has no friends and no boyfriend,” O’Connell explains. “He has Norman-Bates-from-Psycho vibes. And that was not my experience. I had a lot of friends. I moved out to go to college when I was 18. I had sex at 17. Not to brag!” Despite these disavowals, he concedes to some kinship. “Like Ryan, I have struggled with feeling like I’m enough … We were both born in an ableist hellhole, but he is more undercooked than I ever was. I never felt I had the luxury to be socially awk. My role was to disarm anyone I encountered because they were going to be so confused by …” He gestures to himself. “This presentation. It became my job to put them at ease. Ryan worries about whether people around him are comfortable that he never asks, ‘Am I comfortable?’ That’s an epiphany I’ve had.”

Special provides numerous insights into the daily slights doled out by the able-bodied world, such as the gym bunny who congratulates Ryan merely for exercising. “Oh my God, the gym is a nightmare,” gasps O’Connell. “I’m like a celebrity there. ‘Go you! Look at you, gettin’ it!’ I’m like, ‘Oh-kaaay.’” Elsewhere, Ryan finds himself with an able-bodied partner who has a disability fetish. “I have not personally been fetishised,” O’Connell says. Then, with a poker face: “I’m still looking for the right one.”

 

Upgraded to half-hour episodes from the first season’s 15-minute nibbles, the new series is far richer dramatically. There is space now not only for Ryan to pursue his needs but for his friend Kim (Punam Patel), a plus-size woman of colour, and his timid mother Karen (Jessica Hecht), to find fulfilment. “It’s the three of them saying, ‘I wanna be the girl with the most cake.’” He is also proud to have kept his promise that Special would become “gayer and gimpier”. Ryan previously rejected a deaf suitor on a blind date, but now he embraces the disabled and neuro-diverse community.

It’s refreshing to see authentic casting in Special, especially after the controversy over Sia hiring a neuro-typical actor to play a person with autism in her film Music. “Ableism is sosystemic and ingrained in our culture,” says O’Connell. “I don’t think Hollywood is like Mr Burns cackling behind a desk, going ‘Keep those disabled people out!’ It’s more that no one considers disabled people in general, which is very dark and very sad. We’re usually only there for ‘inspiration porn’ or to serve an able-bodied character’s personal growth.”

How can that change? “More disabled creators. We need to stop putting disabled characters in the hands of able-bodied people because that doesn’t give us money or opportunities, and they don’t fully get what it’s like.”

He is no less militant about LGBT casting. “People freak out when you talk about authenticity,” he says, then slips into a parody of shrill straight-splaining: “‘It’s called acting! It’s literally their job!’” This is followed by a gentle wave of the hand, as though placating a petulant child. “‘Honey, baby, sweetie, I understand what acting is. I’m Emmy-nominated!’ But the reality is that if you’re a straight actor, you already have more opportunities than an out gay actor. Why would I take another role from them and give it to someone straight?” Not only are the gay characters in Special played by gay actors, but several of the straight ones are, too. “Can you believe it? It’s possible!”

An explicit approach to gay sex was a deal-breaker from the moment O’Connell started pitching Special. Backed by its executive producer, the Big Bang Theory star Jim Parsons, the show has never shied away from what gay men do in bed, and the new series gets even more down and dirty. One sex scene in particular serves a radical function: Ryan behaves cruelly to his partner, and is cast as the shamer rather than the shamed. “I never wanted him to be this amazing virtuous figure. As marginalised people, we’re allowed to exist within very narrow slots, and I always like to challenge that. I set out to make the viewer feel annoyed at this gay guy with cerebral palsy. He doesn’t have to be perfect so that you can feel good about yourself. He doesn’t need to be your inspiration, honey. He can be a source of your ire.”Advertisement

For all his elation over Special, he admits to feeling “disappointed” when Netflix told him the second season would be its last, but he feels ready to let it go. “This show has given me so much, but it’s never been easy. It has always been limping its way along, holding on for one more day by Wilson Phillips.” O’Connell, on the other hand, is speeding ahead. HBO Max is mulling over Accessible, a pilot he has written set at a disabled boarding school, while his first novel, Just By Looking At Him, is published next year. “The lead is a gay disabled television writer,” he says with a disarming grin. “Whaaat? Who’s that?

If able-bodied people are permitted to plough the same furrow, why can’t he? “Sofia Coppola has wealthy malaise cornered. Sally Rooney writes the same book – they’re good but I’m sorry! – and no one’s like, ‘This again?’ As soon as the characters are marginalised people, they’re only allowed to exist thiiis much.” Perhaps there will come a time when he isn’t writing about cerebral palsy. “But as a writer, I’m naturally attracted to things that aren’t discussed or understood, or which are stigmatised. Unfortunately, disability checks all three boxes. It’s a giant well of interesting stories that we’ve never seen before.” Another big grin. “Why would I throw that out of bed?”

Special season two is on Netflix now.

DWP Stonewalls Freedom Of Information Requests About LEAP

May 26, 2021

With many thanks to Benefits And Work.

 

The DWP have failed to give an answer to any Freedom of Information Act requests relating to the LEAP review made by Benefits and Work, fuelling the suspicion that they have something to hide.

LEAP is a review of 1.6 million PIP claims set up because the DWP had been interpreting the law incorrectly. So far, the review is on course to pay out to only around 7,000 claimants in relation to one case, known as MH, when the original DWP estimate was that 164,000 would benefit.

Algorithms
As reported earlier this month, Benefits and Work asked the DWP for details of any algorithms being used to carry out the LEAP review.

The DWP’s response was to simply direct us to an unconnected parliamentary answer which denied that any algorithms were ever used by the department, but they did admit to using automated ‘business rules’.

We have now made a separate request for details of the business rules used in connection with MH and LEAP, because to us they sound very similar to algorithms.

Letters
In its most recent progress report the DWP claimed that 890,000 cases had been cleared against MH. We made a request to ask how many of those claimants had received a letter from the DWP giving them the results of their review.

The DWP once again pointed us to a parliamentary answer which appeared to say that all of these claimants had received a decision letter. But the answer also included a link to a previous answer which stated that:

“Through continuous monitoring of the exercise, we have been identifying claimants most likely to benefit, so that we can focus on paying these claimants backdated payments more quickly. We are writing to other claimants, explaining how we apply the Upper Tribunal decisions and letting them know they can get in touch with us if they think they are affected, and we will review their claim.”

This has left us uncertain how many of the 890,000 claimants have been written to with the result of a review and how many have simply been written to and told they can ask for a review. This is particularly the case as fewer than 4,000 of the 890,000 have actually been given a payment.

We asked for a review of the DWP’s answer but it remained unchanged. The matter is now with the Information Commissioner’s Office.

Expert advice
We also made a Freedom of Information request for copies of the expert advice and small scale case study which had been used by the DWP to come up with the original estimate that 164,000 claimants would be eligible for a back-payment in connection with MH.

But the DWP refused our request on the grounds that it would take one person more than 3.5 days to collect this information because it is “contained across multiple systems, from a significant time

past, and would require searching through a significant number of archived documents” and that it was therefore above the cost limit.

We don’t believe this to be true. The estimate was created for a document presented to MPs and ministers to persuade them of a need to change the law.

It isn’t credible to argue that the information for the report was never collected and collated but instead is scattered far and wide across the DWP.

We have asked for the decision to be reviewed and will, once again, take the case to the ICO if necessary.

What’s the secret?
There is a massive difference between the 164,000 people the DWP estimated would receive between £3,000 and £12,000 each in back-payments and the 7,000 people the DWP are on course to actually make a payment to.

The DWP have not addressed this issue in any way in their reports on the LEAP review. They very much do not want attention drawing to it.

Which is why we will carry on asking questions until we get some answers.

Covid: Deaf Campaigner Calls For Clear Mask Research

May 26, 2021

More research needs to be done into effective clear masks to help deaf people communicate during the pandemic, according to a campaigner.

Melissa Julings, 35, from Norwich, said the wearing of masks had left deaf people feeling “isolated” and “lost” throughout the past year.

The government is due to review face coverings before 21 June, but Ms Julings said more work was needed to find better clear masks.

A spokesman for the Department of Health and Social Care said: “Transparent face coverings may be worn by those who communicate through lip-reading or facial expressions.

“However, their effectiveness is not supported by evidence so the government does not recommend their use by the wider public at this time.”

Nadia Whittome MP: I’m Taking Time Off With PTSD

May 26, 2021

A Labour MP has said she has decided to take a “step back” from her work because she is suffering from post-traumatic stress disorder (PTSD).

Nadia Whittome said she has been advised by her doctor to take several weeks off for her health to improve.

The Nottingham East MP said the decision was “incredibly difficult” and one she feels “very sad” about.

Labour leader Sir Keir Starmer wished Ms Whittome “all the best” in her recovery and praised her “bravery”.

‘Creating greater acceptance’

In a statement, Ms Whittome, 24, said she has been battling “some persistent health issues” over recent months.

“Until now, I have been attempting to manage them alongside continuing with my full-time work as an MP,” she said.

“Unfortunately, it has become clear that this is not feasible and I have been advised by my doctor that I need to take several weeks off in order for my health to improve.

“I feel it is important for me to be honest that it is mental ill-health I am suffering from – specifically post-traumatic stress disorder (PTSD).

“Through being open about my own mental health struggle, I hope that others will also feel able to talk about theirs, and that I can play a small role in creating greater acceptance and facilitating healthier discussions around this issue.”

Presentational grey line

What is PTSD?

Post-traumatic stress disorder (PTSD) is described as an anxiety disorder caused by very stressful, frightening or distressing events.

Someone with PTSD often relives the traumatic event and may have problems sleeping and find concentrating difficult.

PTSD can develop straight after someone experiences a disturbing event, or it can occur weeks, months or years later.

It is thought to affect about one in every three people who have a traumatic experience.

Source: NHS

Presentational grey line

Ms Whittome said her constituents should continue to contact her office as normal.

“My decision to take time off has been an incredibly difficult one to make. Representing Nottingham East is the greatest honour of my life and I am very sad to have to step back for a little while,” she said.

Ms Whittome became the House of Commons’ youngest MP when she topped the poll at the snap general election in 2019.

During the coronavirus pandemic, she took on a part-time job at a care home but said she was “effectively sacked” after speaking out about personal protective equipment (PPE).

Earlier this month Ms Whittome spoke about a “mental health crisis” in a column published by Nottingham magazine LeftLion.

She said the pandemic has made it worse and that young people have been most affected.

Algae Proteins Partially Restore Man’s Sight

May 25, 2021

The vision of a completely blind man has been partially restored using light-sensing proteins first found in algae.

The man was treated with a type of therapy called optogenetics, which uses the proteins to control cells at the back of his eye.

He first knew it was working when he realised he could see the painted stripes of a pedestrian crossing.

He can now grab and count objects on a table, Nature Medicine reports.

The man, whose identity has not been revealed, lives in Brittany, France, and was treated in Paris.

He was diagnosed with retinitis pigmentosa – which leads to the death of light-sensing cells on the surface of the retina – 40 years ago.

It affects more than two million people worldwide, and although complete blindness is rare, the man has had no vision for the past two decades.

He was treated with optogenetics – a field new to medicine, but one that has long been a staple of fundamental neuroscience.

It uses light to control precisely the activity of brain cells and was used by the scientists to restore the ability of one of his eyes to detect light.

The technique is based on proteins, produced in algae, called channelrhodopsins, which change their behaviour in response to light. The microbes use them to move towards the light.

The first step in the treatment was gene therapy. The genetic instructions for making the rhodopsins were taken from algae and given to cells in the deep surviving layers of the retina at the back of his eye.

Now when they were hit with light they would send an electrical signal to the brain.

However, they would respond only to amber light, so the patient wore a pair of goggles with a video camera on the front and a projector on the back, to capture what was happening in the real world and project a version in the right wavelength onto the back of the eye.

It took months for high enough levels of the rhodopsins to build up in the eye and for the brain essentially to learn a new language to be able to see again.

‘We were all excited’

The first sign it was working was when the patient was out on a walk and suddenly, the stripes of a pedestrian crossing appeared.

Dr José-Alain Sahel, from the Institute of Vision, in Paris, said: “This patient initially was a bit frustrated because it took a long time between the injection and the time he started to see something.

“But when he started to report spontaneously he was able to see the white stripes to come across the street you can imagine he was very excited. We were all excited.”

The man does not have perfect sight, but the difference between no vision and even limited vision can be life-changing.

Prof Botond Roska, from the University of Basel, said: “The findings provide proof-of-concept that using optogenetic therapy to partially restore vision is possible.”

There are several other approaches being used to try to restore sight.

One includes repairing the genetic defects that cause disease, but retinitis pigmentosa can be down to mutations in more than 71 different genes, making that more of a challenge.

Another involves connecting a camera to electrodes implanted in the back of the eye.

Optogenetics itself is also being researched in conditions such as Parkinson’s disease, and to see whether it can enhance recovery from a stroke.

James Bainbridge, a professor of retinal studies at the UK’s UCL, said the study was high-quality, but on just one patient.

“This exciting new technology might help people whose eyesight is very severely impaired,” he said.

Follow James on Twitter

Parents Fear For Pupils’ Mental State At £53,000 Fee School

May 25, 2021

A private special needs school, whose directors include businessmen associated with the Winterbourne View care home scandal, has been accused of putting profit ahead of pupils’ needs.

Annual fees paid by councils to send pupils to Leaways School in east London are £53,000 – higher than Eton.

One parent told a BBC investigation she is pulling out her son as she fears for his mental state if he stays there.

However, Leaways denied the claims that it put money ahead of welfare.

In a statement, the school said: “We strongly refute the suggestion profit is ever put ahead of the needs of children.

“The vast majority of families are happy with our school and they see their children doing very well here.”

The school says it was “deeply saddened to hear the opinions of a small minority… of our parent and staff community”.

‘Sold a dream’

One is Donna, who fought to get her 10-year-old son Javon into Leaways almost two years ago, believing the school would provide state-of-the-art support for an autistic child.

Now she says: “I was sold a dream. They actually have no idea… I feel like if my son stays there any longer, it will be detrimental to his mental state.”

Being there makes him anxious, she says, often he becomes mute, not speaking all day, or isolating himself for hours in the school’s sensory room.

‘Chaotic environment’

Lee Boyce, a former assistant head at Leaways, describes “a kind of systemic failure at a leadership level to… understand the complexity of those children’s needs and to put in place provision that met them”.

When she left in 2019, she says working conditions were stressful and a high staff turnover and absence rates contributed to a “chaotic environment” for pupils who were often already volatile.

Lee, now a principal inclusion advisor for a London borough, specialises in keeping such pupils in mainstream schools and says the £53,000 could be better spent.

“If you had even half of what you get for a child at Leaways… you could do amazing things,” she says.

Reward and responsibility

Leaways is part of Kedleston Group, which runs 13 schools and homes in England.

Kedleston’s directors include Denis and Paul Brosnan. In 2011, they were directors of Castlebeck, which owned the Winterbourne View private hospital near Bristol, where serious abuse was uncovered by a BBC Panorama investigation.

An inquiry the following year found Castlebeck “took financial reward without the responsibility”.

Some current Leaways staff believe profit is paramount at the school.

“It’s a business that happens to be a school,” one support worker told the BBC.

In 2019, Kedleston Group, which is owned by a Jersey-based holding company, had:

  • a £5.3m operating profit, up from £4m in 2018
  • a turnover of £32.7m, up nearly £4m on 2018
  • operating profit on its London schools of £740,000

‘Failing him’

Donna says Javon’s Education and Health Care Plan (EHCP) – a legal document which details a child’s special educational needs and the support required – was not reviewed for nearly two years.

By law, these documents must be reviewed annually and this timescale remained in place during the pandemic.

Donna claims the amount of speech and language therapy and emotional literacy coaching provided by the school fell below the levels specified in his plan.

“How do you explain to a child with autism, that in actual fact mum got it totally wrong?”https://emp.bbc.co.uk/emp/SMPj/2.43.0/iframe.htmlmedia captionDonna: “How do I explain to him I got it wrong?”

Donna is not the only parent wanting to remove her child.

Another, who asked not to be named, also told of delays to educational reviews and inadequate therapy.

At first sight Leaways “appears to be a super specialist school, glory and glitter. It ignites hopefulness and it’s just not that”, she said.

‘No teacher’

In 2016, when Brenda’s son Ethan started at Leaways, she says: “Everything was perfect.”

But in 2017 the head teacher left, followed by Ethan’s teacher, and the class was led by a teaching assistant for most of the next school year, Brenda adds.

Leaways says the use of teaching assistants to lead classes is “kept to an absolute minimum” and only when the alternative is “not to have the children in school at all”.

“Where possible we ensure that the teaching assistant is experienced, has an aptitude for leading the class and has a higher-level qualification,” it said.

“The school does not have a materially different staff turnover rate to the industry norm.”

But without a class teacher, Brenda says Ethan became anxious and aggressive and started having seizures.

When he was checked out for epilepsy at Great Ormond Street hospital, the consultant said: “It’s not epilepsy. It’s anxiety,” she remembers.

Eventually the school appointed a new teacher, “a godsend”, according to Brenda, and Ethan’s mental state improved,

But in the summer of 2019, she also left and Brenda decided it was time to remove Ethan.

The family felt there was no-one to hear why they were taking out their son: “There was nobody to tell. We just weren’t confident any more,” says Brenda.

‘Little training’

Lucy, who asked not to use her full name, was Ethan’s teacher in his last year at Leaways.

She was hoping to gain experience as a specialist autism teacher, an area where she had no formal training, but within weeks of starting in the school’s specialist unit, says she was asked to lead it.

She declined, saying: “It wasn’t what I was expecting… It became clear quite quickly that the school were making a profit from not meeting the needs of children.”

Some of the teachers were unqualified, she says, and support staff often had very limited experience and training.

“When you start working there, you’re just kind of thrown in,” she says, adding: “It’s harder to teach children with complex needs than it is to teach typically developing children.”

She says during her time at Leaways, access to therapies was limited. For example, there was one part-time counsellor to support some 50 children with social, emotional and mental health needs.

She says children in the mainstream school where she now works “have better access to therapy”.

“This very high fee-paying school is just not meeting the need.”

‘Consistent standards’

Leaways emphasises that Ofsted’s latest report, published in March, says the school’s leaders “ensure standards are met consistently”, that children are “well supervised” and staff supervision is “proportionate and appropriate”.

“We are also regularly visited for quality assurance by the local authorities who place children with us, who have also raised no concerns of any kind.

“No school is perfect and all have faced challenges as a result of Covid-19.

“Leaways has faced the dual challenges of both the pandemic and an industrial dispute.

“Where improvements are required, we are actively working with parents, our colleagues and all parties to make positive changes and progress wherever they are needed.”

A long-running dispute over pay and conditions ended recently with a deal between Leaways and the National Education Union.

Hollyoaks Star Amy Conachan Reveals More On Courtney And Sid Storyline

May 24, 2021

Hollyoaks‘ Courtney Campbell and Sid Sumner’s relationship has taken a rather different turn over the past few weeks, with Sid coming to harbour feelings for his teacher as she has supported him through his partial leg amputation.

Caring Courtney (Amy Conachan) has been encouraging Sid (Billy Price) to pursue his career goal of joining the police and Sid recently misread the signals and kissed his teacher. Despite Courtney telling Sid that his behaviour had been inappropriate, Sid continues to harbour feelings for Courtney and the situation takes another turn next week when Sid lies about the nature of their relationship.

Actress Amy Conachan, who plays Hollyoaks High teacher Courtney, has revealed to Inside Soap that Courtney definitely has no romantic feelings toward her student.

“She had no idea Sid had feelings for her,” she said. “So she was shocked and embarrassed, and aware Sid probably felt the same. Courtney works in a school, so she knows teens do silly things, and just shrugs it off.”

In upcoming scenes, Sid will snap a photo of himself and Courtney while they chat and share it online. This leads to Courtney facing trouble at work as she is questioned over her relationship with Sid during her interview for the deputy headteacher job.

But Amy revealed that Courtney won’t be condemning Sid for his behaviour, explaining that her character is understanding of the teen’s confused feelings.

“I feel bad for Sid! And I think Courtney does too, she’s emotionally aware and mature,” the actress explained. “Her job is to work with kids, so she realises why Sid spreads the rumours and takes the photo. So while she’s angry, she understands and loves him anyway.”

She continued: “I think Sid’s problem at the moment is that he can’t distinguish between caring for someone and having a crush on them. But Sid’s been through a lot in a short amount of time, and all while being a teenager – it’s a lot to deal with.”

Hollyoaks has portrayed student-teacher relationships before, most notably in the case of Becca Dean and Justin Burton’s troubled romance in 2006. But could Courtney and Sid be heading toward a two-way romantic relationship?

“It would be a real shame if it got to that stage,” Amy said. “And it would be strange if anything else developed, as Courtney has been a maternal figure towards Sid. But you never know what’s around the corner…”

Will Sid’s infatuation get Courtney into serious trouble?

Hollyoaks airs weeknights at 6.30pm on Channel 4, with first look screenings at 7pm on E4.

‘SMART’ wheelchair wheel design wins Bolt Burdon Kemp design competition 

May 24, 2021

A press release:

An innovative wheelchair wheel design has won Bolt Burdon Kemp’s Design the Change Competition. The competition, in its second year, is intended to raise awareness of the day-to-day challenges facing people with spinal cord injuries and how innovative designs can make a real difference.  

The competition invites UK-based university students to design a product aimed at improving the lives of people with a spinal cord injury. Law firm Bolt Burdon Kemp, which supports people with spinal cord injuries, was looking for a design which was both unique and practical.  

Winner Thomas Salkeld, 23, a third year Product Design BSc student from Cardiff Metropolitan University, designed the ‘Smart Wheel’, a motorised wheel which can be added to most wheelchairs and provides users with assistance on uneven ground, elevation and on long journeys. The wheel can be controlled from the user’s phone. 

Thomas wins £3,000, with an additional £2,000 being awarded to Cardiff Metropolitan University.  

Design the Change is supported by Bolt Burdon Kemp’s charity partner Cerebra which works to improve the lives of children with neurological conditions.  Part of the charity’s work is to design bespoke equipment to meet families’ needs at their innovation centre and as part of his prize, Thomas will have a week’s placement at the centre in Wales next year.  

Thomas really impressed the judges by researching his design thoroughly and taking into account the challenges facing those with a spinal cord injury who use a wheelchair. He bought a wheelchair himself and found travelling in it exhausting, especially uphill. He spoke to several people who had sustained a spinal cord injury and who were also wheelchairs users and ran his prototypes by them for feedback. 

Highly commended in the competition and also offered a week’s placement at Cerebra is Anna Lis, 21, a third year Product Design student at the University for the Creative Arts. Anna’s Superhuman Shoe and Ankle Foot Orthosis design provides support for people with drop foot, a common side-effect of a spinal cord injury. The judging panel were impressed with Anna’s detailed research and the fact her shoe celebrates the support it offers, rather than disguising its specialist features. 

Victoria Oliver, head of the spinal injury team at Bolt Burdon Kemp, said: “We were blown away by the quality of the entries this year and it’s fantastic to see how much research went into everyone’s designs. A spinal cord injury is a life changing event that makes even the most mundane of tasks time-consuming, and innovative designs and products can really help make the world more accessible to the 50,000 people living with a spinal cord injury in the UK.   

“Thomas’s design showed real awareness of the challenges facing those with a spinal cord injury who use a wheelchair and he went to great lengths to make sure his Smart Wheel design was practical, comfortable, and aesthetically pleasing.” 

Winner Thomas Salkeld said: “I am ecstatic about winning the competition as designing to help people is my passion and what I wish to pursue in the future. The aim of my design was to really take into consideration what the users want and the problems they face every day in regards to their mobility in a wheelchair, then applying my engineering, design, prototyping and technology skills that were necessary. The aesthetics were designed to be functional but also pleasing to the eye, allowing the users to be proud of the product on their wheelchairs. I want to say a huge thank you to a number of people but first to Bolt Burdon Kemp and the judges for giving me the opportunity to participate in such an interesting brief and subject. I would like to thank James Dwyer, Louise Evans and Darren Povey for giving me feedback and a glimpse into some of the struggles they have in wheelchairs which really drove my project forward. Lastly I would like to thank my tutors Joe Venables and Clara Watkins for supporting me throughout the project.” 

Thomas’s design was judged by a panel of experts including Christa Dyson, trustee for the Spinal Injuries Association, Dr Ross Head, Product Design Manager for the Cerebra Innovation Centre, Ian Hoskings, club chairman, vice coach and player for Stoke Mandeville Wheelchair rugby club, Lady-Marie Dawson-Malcolm, Support Network Officer for the Spinal Injuries Association and Doug Nevill, the Head of Mechanical Design at Williams F1. 

Jeremy Paxman Receiving Treatment For Parkinson’s Disease

May 24, 2021

Broadcaster Jeremy Paxman has revealed he has been diagnosed with Parkinson’s disease.

The former Newsnight presenter said he was receiving “excellent” treatment and that his symptoms are “currently mild”.

“I plan to continue broadcasting and writing for as long as they’ll have me,” he said.

The 71-year-old has hosted University Challenge since 1994 and is renowned for his fiercely inquisitorial interviewing style.

Born in Leeds in 1950, the presenter joined Newsnight in 1989 and remained with BBC Two’s nightly bulletin until June 2014.

In recent years he has presented documentaries about the British Empire and Winston Churchill.

Paxman said he would be making no further comment and had written about his diagnosis for the June edition of Saga magazine.

Can TIX And His Tourette’s Win Eurovision For Norway?

May 21, 2021

This year’s Eurovision entry from Norway, TIX, has arrived with more than just music on his agenda.

“To me Eurovision is not much about the contest, especially this year. It’s the biggest arena to talk about diversity, acceptance and inclusion.”

TIX – real name Andreas Haukeland – takes his name from the tics he has due to his Tourette’s Syndrome.

During the semi-final on Tuesday, TIX showed his tics live on stage by removing his sunglasses.

He describes that moment as “one of the most difficult things I could ever do” as his tics “just go bananas”.

These tics usually present as twitching in his facial muscles, and blinking.

He adds: “The song is about feeling inadequate. It’s about feeling out of place in this world.

“But the point of that moment is to show people this angel. What is he hiding? What’s his weakness? Why is he being held back by these demons? What is he afraid of?”

Fallen angel

TIX got to the final by winning a public vote in Norway, and then qualifying in the top ten of the semi-final in Rotterdam on Tuesday.

The themes behind the song, Fallen Angel, come from TIX’s personal experience with bullying and mental health, themes which he shared in an interview with NRK ahead of his selection for Norway.

“I think this year more than ever, it’s important to talk about it because of the current situation in the world.

“People have been having a miserable year, and a lot of people are suffering right now from mental illness and loneliness.”

Ewan Spence, Editor of Eurovision website ESC Insight, says TIX isn’t the first disabled artist to feature prominently at Eurovision.

“In 2015 you have the Finnish punk band PKN, who won through their national final and went on stage in Austria.

“There have been a number of blind performers and a couple of wheelchair users, such as Monika Kuszyńska for Poland in 2015.

“There’s also Bianca Nicholas, who sang for the UK with Electro Velvet in 2015. She is not visibly disabled, but has cystic fibrosis.”

TIX is hoping his music will have an impact across Europe, and for one fan in the UK, his position in the contest means a lot.

Jess Short, 24, from Cornwall, has Tourette’s and volunteers with the charity Tourette’s Action. She has been a Eurovision fan for more than a decade.

She says it’s “brilliant” to have someone like TIX on stage at Eurovision.

‘Embrace yourself’

“It shows that despite having something like Tourette’s, which can be so debilitating, you can live your dream and you could do anything that you put your mind to.”

TIX’s message to people like Jess across Europe is: “Don’t just be yourself, embrace yourself.”

He adds: “Once you embrace yourself, that’s when the happiness starts. Tourette’s is both a blessing and a curse, but try to focus on the blessing”.

The Eurovision Song Contest is being broadcast on Saturday 22 May on BBC One at 20:00 BST.

An Avenue To Other Worlds: Auditorial, A New Idea For Accessible Storytelling

May 21, 2021

The Guardian have come up with a really great new project, Auditorial.

 

Audio storytelling is an avenue into other worlds. So when the Guardian was approached to take part in an experimental project to make journalism more accessible to low-vision and blind users, it felt like an opportunity we couldn’t turn down. Audio has always been about making stories more accessible, and this was an opportunity to push that even further.

The result is a storytelling website called Auditorial, created to showcase the possibilities of accessible stories for blind and low-vision audiences. The story is our own, paired with Google technology and the invaluable accessibility user-testing and expert advice provided by the Royal National Institute of Blind People (RNIB) – an example of what can be done when inclusive design and thinking are at the forefront from the start.

The website, which was created over a seven-month period, was born out of an episode of our Science Weekly podcast from 2018. And the story, similar to the original podcast, is based on Bernie Krause, one of the founders of a field known as soundscape ecology. Over 15 or so minutes, we use his story to explore the devastating effects of the climate crisis and other human-induced environmental destruction on the sounds of the natural world, from coral reefs to Costa Rican rainforests.

The Auditorial platform uses an assortment of accessibility features and tools to tell the story, including multimodal films with video and audio speed control, high contrast, text-only mode, and scale and focus controls. Users can press play to start the story and adjust the audio, visual and written settings as they are taken through the story.

The final product is something we are really proud of. There have been many lessons learned along the way, and our ideas of what we would end up with have changed as the project progressed; we were trying to do something that had never been done before. The hope is that we can go on to apply some of its key tenets to more of our journalism – and encourage others to do the same.

 

Enrich your storytelling with sound

Many low-vision and blind users currently access journalism online through screenreading software, which converts text into audio. This is often done in a synthetic voice and doesn’t always discriminate between essential text and other aspects, meaning the experience can be jarring.

But, as with podcasts, when a story is presented in audio, the result is a more immersive experience, where sound design and intonation can add emphasis and emotion, and characters are able to tell their story in their own words. While this won’t be possible for all of our online journalism, it’s something we should consider when thinking about things such as how we label images using something called “alt tags”.

The team worked to create more narrative alt tags to improve the story experience, such as this one describing the scene of Bernie Krause recording.

Write narrative visual descriptions

For those using screenreading software, alt tags are essential for letting users know what an image shows. And while most websites – including the Guardian’s – do provide these, they are often written as succinct labels. This can lead to quite a disjointed narrative experience.

So a big lesson for our team was how to make alt tags more descriptive and more in line with the narrative. They should feel part of the reader experience and, if done correctly, should play a role in telling the story to a person using assistive technologies.https://interactive.guim.co.uk/embed/from-tool/looping-video/index.html?poster-image=https%3A%2F%2Fuploads.guim.co.uk%2F2021%2F05%2F19%2FKeyViusal_500.mp4&mp4-video=https%3A%2F%2Fuploads.guim.co.uk%2F2021%2F05%2F19%2FKeyViusal_500.mp4An abstract red and blue illustration shows a howler monkey playfully hanging from a tree with a yellow leaf in its mouth. Behind the monkey, the forest trees part to show a sunset over the ocean. The image switches between a light and dark colour mode.

Offer alternative colour schemes

An important part of the project was providing visuals to enhance the story for users with low vision, such as light or colour sensitivities.

We addressed this by giving users the opportunity to choose between black and white, yellow and black, and blue and white, which are popular combinations. But Google was also able to introduce light and dark modes – a real game-changer for people who struggle with bright screens.

Accessible journalism

The Guardian has always been dedicated to digital innovation. When new storytelling formats and platforms emerge, we try to consider how these technologies will work for our audiences, and experiment with them to bring Guardian journalism to life. Auditorial is just the latest iteration of that.

While we continue to try to make our journalism as accessible as possible, there are always going to be things we can improve on. Throughout this project, we have learned so much from our partners at Google and the RNIB about accessibility and inclusive product design – findings we are really excited to be able to share with our readers everywhere.

Subnormal: The Black Children Wrongly Sent To Special Schools

May 20, 2021

In 1960s and 70s Britain, hundreds of black children were labelled as “educationally subnormal”, and wrongly sent to schools for pupils who were deemed to have low intelligence. For the first time, some former pupils have spoken about their experiences for a new BBC documentary.

In the 1970s, at the age of six, Noel Gordon was sent to what was known at the time as an “educationally subnormal” (ESN) boarding school, 15 miles (24km) from his home.

“That school was hell,” says Noel. “I spent 10 years there, and when I left at 16, I couldn’t even get a job because I couldn’t spell or fill out a job application.”

About a year before joining the ESN school, Noel went into hospital to have a tooth removed. He was given an anaesthetic, but it transpired that Noel had undiagnosed sickle cell anaemia, and the anaesthetic triggered a serious reaction.

Noel says the resulting health issues led to him being perceived as having learning disabilities and being recommended for a “special school”. Yet no evidence or explanation of his disability was ever given to him or his parents.

“Someone came and said they’d found “a special boarding school with a matron where they’d take care of my medical needs”, says Noel.

During that conversation they also said Noel was “a dunce. Stupid.”

But Noel’s parents were not made aware that his new school was for the so-called educationally subnormal. They had moved to England from Jamaica in the early ’60s and had high expectations for their son’s education.

During his first night at the boarding school, six-year-old Noel lay alone in bed, crying for his mum. The school felt cold and institutional.

“I can still smell the old wooden flip desks. Oh, and being racially abused on my first day,” he says.

A student hurled racial slurs at him in the classroom but wasn’t reprimanded – the teacher simply told him to sit down.

The school didn’t teach a curriculum. Although Noel was given a book to write in by a teacher, he was never taught basic grammar or how to spell. He did some basic addition and subtraction but during classes, he mainly did crafts and played games.

His parents only realised what kind of school it was when Noel, then seven, was punched by a 15-year-old boy, and his father visited for the first time.

Noel recalls his father saying to the headmaster, “This is a school for handicapped children” – using an outdated term. He says the headmaster replied, “Yeah, but we don’t like to use that word, we call them slow learners.”

The realisation was devastating, but Noel’s father felt powerless to change things.

Noel wasn’t given the chance to take exams and get qualifications. On reflection, he says being labelled educationally subnormal made him feel inferior for the rest of his life, and gave him a lot of psychological problems.

“Leaving school without any qualifications is one thing, but leaving school thinking you’re stupid is a different ball game altogether. It knocks your confidence,” he says.

Short presentational grey line

A new BBC documentary tells the story of how black parents, teachers and activists banded together to force the education system to change.

 

Short presentational grey line

The term “educationally subnormal” derived from the 1944 Education Act and was used to define those thought to have limited intellectual ability.

“That label made children feel inferior,” says education campaigner Prof Gus John, who came to the UK from Grenada in 1964 as a student, and soon became aware of the issue.

“Students from ESN schools wouldn’t go on to college or university. If they were lucky, they’d become a labourer. The term was paralysing and killed any sense of self-confidence and ambition.”

Primary and secondary ESN schools categorised children as having moderate learning disabilities, severe learning disabilities or being “un-teachable”.

These categories were broad and when students were recommended for ESN schools, robust reasons weren’t always given by teachers and psychologists.

While some ESN schools did have good examples of teaching, for many pupils, their needs were overlooked.

Black students were sent to these schools in significantly higher proportions. The documentary makers have seen a 1967 report from the now-defunct Inner London Education Authority (ILEA), which showed that the proportion of black immigrant children in ESN schools (28%) was double that of those in mainstream schools (15%).

“The percentage of black children in ESN schools relative to black students in normal schools was scandalous,” says Gus John.

But why were so many black children defined as subnormal?

Figures from the 1960s and 70s show that on average, the academic performance of black children was lower than their white counterparts. This fuelled a widespread belief that black children were intellectually inferior to white people.

A leaked local authority report in 1969, written by a head teacher called Alfred Doulton, argued that West Indian children in general had lower IQs. This claim was based on the results of IQ tests that were commonly taken by primary school children at the time.

One of the key proponents of such theories was Hans Eysenck, a former professor at the Institute of Psychiatry at Kings College London. He believed intelligence was genetically determined and cited a US study that seemed to show that the IQ of black children fell, on average, 12 points below white children.

As Gus John says in the documentary: “When people like Eysenck wrote about race and intelligence, what they were actually doing was justifying all those tropes that had been floating around throughout the period of enslavement, where people believed that not only were black people sub-human… but they can’t be expected to perform or to be as intelligent as white people.”

Many teachers saw black children as intellectually inferior, and feared that too many black pupils in a class would depress the attainment of white pupils.

Following a protest by white parents in Southall, in June 1965 the government issued guidance which underlined the social, language and possible medical needs of immigrant children, and suggested maintaining a limit of about 30% of immigrants in any one school.

As a consequence, many local authorities adopted the policy of bussing – sending immigrant children to schools outside their local area in an attempt to limit the number of ethnic minorities in schools. The practice finally ended in 1980.

“The education system fuelled and legitimised the idea that black Caribbean children were less intelligent than other children. This was why so many of them ended up at ESN schools. It was rampant racism,” says Gus John.

Many wrongly equated race with intellectual ability. But as the late educational psychologist Mollie Hunte argued, the generally poor attainment of black students wasn’t because of their intellectual ability. Instead, the tests used to assess pupils at the time were culturally biased. https://emp.bbc.co.uk/emp/SMPj/2.42.4/iframe.htmlmedia captionA new documentary examines one of the biggest scandals in the history of British education

As Gus John explains, the tests used references and vocabulary that newly-arrived Caribbean children were unfamiliar with.

“A key element was language,” says Gus John. “If you grew up in a Jamaican household, you’d use Jamaican English – patois or creole. The problem most Caribbean students had was that because it was a derivative of standard English, nobody believed that black students needed language support.”

As a result, they were not given the extra help other immigrant children, who spoke no English before they arrived, received.

According to Gus John, teachers didn’t try to understand the cultural barriers black children faced, and the assessments didn’t consider their domestic and socioeconomic circumstances – or the impact of migration. Many children would travel to the UK only once their parents had settled in. They arrived in an unfamiliar country to live with virtual strangers, who they had not seen for years.

“This displacement and movement caused a lot of trauma,” says Gus John. “There was grief and bereavement. Those children would often not see their grandparents again.”

According to the education campaigner, there was a culture of low expectations among teachers. Learning difficulties were mistaken as learning disabilities and black children were simply “written off” and sent to ESN schools.

That is what happened to Maisie Barrett from Leeds, who was sent to an ESN school at the age of seven in the 1960s.

“I initially went to a mainstream school. There, a teacher told my mother that I was ‘backwards’ and couldn’t learn. We were told that I’d be better off at a special school.”

Maisie says that the decision to send her to an ESN school was a mistake that ruined her life chances. Like Noel, she wasn’t taught a curriculum.

“We played games, had discos… I call it a ‘free school’ because the education was so basic and we played a lot more than we worked,” she says.

It was only in her 30s, decades after being sent to the ESN school, that Maisie was diagnosed with dyslexia.

“Rather than help me with my learning difficulties, I was simply dismissed as stupid. Teachers never took the time to find out why I struggled with learning. That messed up my confidence,” she says.

“I was slow, but a teacher should have taken the time to help me learn.”

According to Maisie, the lack of learning and support was only part of the problem.

“I went to a school that was a racist institution,” she says.

Both Noel and Maisie were eventually offered the chance to attend mainstream schools. By then however, it was too little too late.

In Noel’s case, he went to a local secondary school on a part-time basis from the age of 12 and spent the rest of the week at the ESN school.

“At the part-time secondary school, I would truant because of the intimidation of not having friends and not being able to read,” says Noel.

Maisie left her ESN school at the age of 13 and started at mainstream secondary school.

“My mum put me in touch with a black social worker who, after assessing me, said that I was intelligent and suggested that I was placed in the ESN school because of racism,” says Maisie.

By then, however, unable to read or write, Maisie found secondary school extremely challenging and she left with no qualifications.

Initially, many Caribbeans who migrated to the UK during the 1960s and 70s, had a favourable view of ESN schools. Often referred to as “special schools” by teachers, Caribbean parents, with little understanding of the British education system, thought these schools would provide better support and learning for their children.

“When my mother was told that I’d been recommended for a special school, I remember her smiling. She thought that a special school meant a better school,” says Maisie.

This presumption about “special” schools was also informed by Caribbeans’ experiences of schools back home.

“British education was seen as a route to social mobility and the aspirations of parents were very high,” says Gus John. “Teachers had a high profile in Caribbean communities, and parents initially trusted British teachers. It was a shock to find out that their children were being defined as subnormal.”

However, concerns soon developed among Caribbean parents. As they witnessed their children struggle with the basics of reading and writing, parent and action groups emerged.

For example in 1970, after discovering that there was a disproportionately high number of black children in ESN schools in north London, a group called the North London West Indian Association formally complained to the Race Relations Board – alleging discrimination under the 1968 Race Relations Act.

In 1971, a book called “How the West Indian Child is Made Educationally Subnormal in the British School System”, proved instrumental in shifting the opinion of black parents. The author, Grenadan writer and teacher Bernard Coard, taught in an ESN school and had noticed the high number of Caribbean children there. When a group of concerned parents asked him to look into the issue, he wrote the book in record time.

He argued that ESN schools were being used by the education authorities as a “dumping ground” for black children, and that teachers were mistaking the trauma caused by immigration for a lack of intelligence.

Bernard Coard’s seminal work led to positive action, and a sharp rise in black supplementary schools. These were Saturday schools set up by black parents with the aim of raising the educational attainment of black children. They would teach curriculum subjects alongside black history, to raise the self-esteem of children, to help them gain qualifications and prepare them for employment.

Following years of pressure and campaigning, the 1981 Education Act enshrined inclusivity in law and the term “educationally subnormal” was abolished as a defining category.

A government enquiry into the education of children from ethnic minority groups published in 1985 found that the low average IQ scores of West Indian children were not a significant factor in their low academic performance. Instead, racial prejudice in society at large was found to play a crucial role in their academic underachievement.

But for both Noel and Maisie, the impact from their time at ESN schools remains.

“The ESN label crippled my confidence. I could have been anybody – but I was never given the tools to be the person I was born to be,” says Maisie.

Despite writing two books and gaining four degrees after leaving school – including in Caribbean studies and creative writing – Maisie has struggled to find work over the years. Currently unemployed with two adult children, she did work as a dyslexic support worker but was made redundant a few years ago.

Maisie feels as if she has spent her life “catching up”, ever since leaving the ESN school.

Noel discovered he actually likes learning and has accumulated a number of impressive qualifications as an adult, including a degree in computing. His wall at home in Tottenham is covered in certificates. Nevertheless, he still struggles with his reading and writing.

“That ESN school has messed me up,” says Noel.

And despite significant progress since then, disparities in the education of black children remain. “The concerns we used to have about ESN are still very much with us now in terms of the number of black children being put into pupil referral units,” says Gus John.

Pupil referral units were set up in 1993 to teach children excluded from mainstream school. But black pupils are disproportionately hit with fixed-term exclusions in England – by three times as many in some places.

As Gus John considers the long-term impact of ESN schools, his biggest regret is that “a whole generation were dissuaded from dreaming big”.

  • You can watch Subnormal: A British Scandal on BBC1 on Thursday 20 May at 21:00 or watch on iPlayer
  • The documentary follows on from Steve McQueen’s film Education, part of his critically acclaimed mini-series Small Axe

Dean Du Plessis: The First Visually Impaired Commentator To Cover International Cricket

May 20, 2021

The grunt of a bowler’s delivery, the shuffle of the batsman’s feet and the crunch of willow striking leather.

These sounds – which often go unnoticed by cricket fans – are all that are needed for commentator Dean du Plessis to relay what is happening to his audience.

The 44-year-old Zimbabwean, who was born with tumours behind both retinas, is the first visually impaired commentator to cover international cricket.

“Commentating by sound is nothing spectacular,” he modestly says.

“I have a feed from the stump microphone, no other technology, and just listen very, very carefully; as much as sighted people pay close attention to what they’re seeing, that’s what I do.”

Speaking to BBC Sport, Du Plessis explains the origins of his love for cricket, his journey into the commentary box and the techniques he uses when calling the action.

Falling in love through the sound of cricket

Du Plessis is true cricket aficionado, whose commentary is often complemented with the most obscure statistics from years gone by.

But he was not always a fan of the sport.

“My brother Gary was a very, very good cricketer but I didn’t understand the game when I was young,” he says.

“Nobody really took time out to explain cricket to me and I actually hated and loathed that with a passion.”

Born in Harare, Du Plessis later went to study at boarding school in South Africa which is where his attachment to cricket first surfaced.

In 1991, South Africa travelled to India in what was their readmission to international cricket with the country’s apartheid regime coming to an end.

“I was listening to the third match of the series on Radio 2000, South Africa’s equivalent to Test Match Special,” Du Plessis says.

“All I heard was noise, that’s all I can describe, it was just a sound of about 60 or 70,000 Indian fanatics cheering and also continuously letting off fireworks.

“And vaguely through the noise of cheering and fireworks far away, you could hear a commentator trying to tell you what was going on and I didn’t understand what he was saying.

“It was something like ‘in comes Donald to Tendulkar, through square leg, past the umpire, down to backward square leg, the fielder picks up and they run through for a single’.

“I knew little bits about cricket but I didn’t know about backward square leg and things like that.

“But I started to listen and really enjoy it. I don’t know why because I didn’t understand what they were saying, but every time it went for four or a six, I could feel the excitement building.”

Phoning cricket stars and ‘being a pest’

As Du Plessis’ affection for the game grew, he set off on a mission to reach out to his new-found heroes.

While the modern sports fan may direct message Ben Stokes or tag Jofra Archer, Du Plessis would quite simply search for Zimbabwe cricketers in the local telephone directory.

“I would then have their number and phone using a call box from school, hoping my money wouldn’t run out and just wanting to talk cricket with these players,” he says.

“I was a real pest and the main poor victim was bowler Eddo Brandes, he was a chicken farmer and sometimes I would call him after I had finished school at 8pm and he had to literally be up with the chickens at three or four o’clock in the morning.

“He’d be a bit grumpy at first but once he was up and awake he was very, very willing to chat. I also used to phone Alastair Campbell who was very kind to me as were both the Flower brothers, Grant and Andy.”

But it was former Zimbabwe batsman David Houghton – now head coach at Derbyshire – who Du Plessis really struck up a friendship with.

“Dave was just a fountain of information, but what I really appreciate was he didn’t just answer my questions but he would ask all about me too,” adds Du Plessis.

“Once my money was about to run out and he asked for my number to call me back, and we spoke for a good 20 minutes.”

From fan to commentator

Having finished his studies, Du Plessis returned to Zimbabwe with a network of superstar cricket friends.

“It was the cricketers – the Flower brothers, Houghton, Campbell, Brandes – that made me feel very, very welcome and would invite me to come watch them play,” he says.

Du Plessis soon became a regular at national grounds and, having been given the freedom to walk around the media centres, was rubbing shoulders with broadcasters and cricket press.

During an international triangular series between Zimbabwe, India and West Indies in 2001, he was invited to join journalist Neil Manthorp, who was on old school friend, and former India batsman Ravi Shastri for a 15 minute chat on the Cricinfo website’s online radio broadcast.

Du Plessis’ knowledge and enthusiasm impressed both the broadcast team and those back at headquarters.

“It was meant to just be a short conversation on my enjoyment of cricket but Neil received an email from the office halfway through,” he says.

“The producers wanted to keep me on for the full 30 minutes and make sure I was a part of the rest of the series.

“And that’s pretty much how my commentary started. I then got my first television gig two years.”

How does he do it?

Du Plessis is often asked how he manages to identify what is happening on the field.

“Well, I don’t have any extra technology or extra stump mic or anybody telling me what’s going on,” he answers.

“I can tell you who the different bowlers are by the way they approach the crease.

“With Stuart Broad, for example, there’s a bit of a dragging sound as the ball is delivered he gives an explosive grunt as he gets to the wicket.

“Some approach the crease very quietly, like Freddie Flintoff who hardly made a sound, whereas Shane Warne, as a leg-spinner, had a huge grunt.”

Du Plessis can also determine which batter is on strike through the sound of their voice, and the direction in which the ball is hit by the noise it makes off the bat.

“In terms of batting you just listen very carefully to how the batters communicate with each other,” he says.

“When Andrew Strauss and Marcus Trescothick used to bat together, Trescothick would always just say “run” when he hit the ball whereas Strauss would say “Yeah come on, come on, come on”.

“And when the ball is hit through the off side, it has a very sharp, crack sound, as opposed to the ball being played through the leg side.

“I can also tell when sweep shots are being played because you can hear the bat hitting the ground with a scraping sound.”

‘I think I have found my niche’

A lifetime of listening to cricket coupled with the ability to recognise people by sound, touch and smell has enabled to Du Plessis to forge a successful career as a broadcaster.

A presenter of his own cricket podcast, he says his commentary work may need to take a back seat due to health reasons.

“I think I will have to do less of the commentary and that’s mainly due to the fact that I’ve lost quite a bit of my hearing, especially in my left ear,” he explains.

“Apparently that’s a common thing with blind people because we use our ears so enthusiastically.

“But I think I have found my niche in hosting, presenting and doing podcasts. I would love to progress my broadcasting career and perhaps emigrate from Zimbabwe, ideally to a cricket-playing nation.”

Covid: Are City Centres Less Accessible As Lockdown Eases?

May 19, 2021

As our town and city centres reopen following Covid restrictions, changes are being made to accommodate new rules.

But are they making these places less accessible?

Disability rights campaigner Emily Nicole Roberts gives her experiences around Swansea.

Concussion: Calls For Rugby To ‘Follow NFL’ On Brain Injury Risk

May 18, 2021

Rugby bosses need to follow the NHL’s example in reducing risk of brain injury, according to former players.

In December, former Welsh international Alix Popham and a small group of former players announced they were suing World Rugby, the RFU and the Welsh Rugby Union over brain damage.

Popham was diagnosed with early onset dementia, which has been attributed to concussions sustained during his rugby-playing days.

He and other players are now asking rugby bosses to follow American football’s example in reducing the amount of contact in training sessions.

Popham has the framed jersey from his last Wales game – a win against England in 2008 – and has been shown pictures of him celebrating afterwards.

But says he cannot remember the game.

DWP Issues Long Covid Guidance For Child DLA, But Where Is PIP And UC Information?

May 17, 2021

With many thanks to Benefits And Work.

 

The DWP has issued guidance to DLA decision makers on how to deal with awards for Long Covid in children, but there is no evidence that similar guidance has been issued for PIP or for the work capability assessment for ESA and UC.

The DWP has updated its 950 page Medical guidance for DLA and AA decision makers (child cases) to take account of Long Covid, or post-COVID as it is referred to in the guide.

Decision makers are told that children who remain unwell at 12 weeks after the onset of COVID-19 with a wide variety of symptoms, and whose long term prognosis is unknown, meet the diagnostic criteria for post-COVID syndrome.

Decision makers are told:

“Some may recover in a few more months and some may recover over a longer time period. Others may remain unwell or become more unwell over time. Fluctuating functional impairment and wide ranging symptoms that change over time, seem to be a feature of the condition.

“It is those children who have significant functional impairment at 12 weeks and do not seem to be recovering, who may have entitlement to DLA Child.

“Always consider the qualifying period and prospective test when assessing needs in a claim for DLA Child.

“A child does not have to have had a positive test result to be diagnosed with the syndrome. Testing has not always been easily available.”

The guidance includes symptoms of post-COVID.

Decision makers are told they must refer all cases where post-COVID is stated as a disability to the on site health professional before they make a decision on the claim, but that where an award is made, 12 months is appropriate.

What we don’t know yet is what guidance has been issued to assessors and decision makers relating to post-COVID in connection with PIP or the work capability assessment.

Benefits and Work has made a freedom of information request for any such guidance. We’ll let you know what we find out.

Paralysed Man Uses ‘Mindwriting’ Brain Computer To Compose Sentences

May 14, 2021

A man who was paralysed from the neck down in an accident more than a decade ago has written sentences using a computer system that turns imagined handwriting into words.

It is the first time scientists have created sentences from brain activity linked to handwriting and paves the way for more sophisticated devices to help paralysed people communicate faster and more clearly.

The man, known as T5, who is in his 60s and lost practically all movement below his neck after a spinal cord injury in 2007, was able to write 18 words a minute when connected to the system. On individual letters, his “mindwriting” was more than 94% accurate.Advertisementhttps://a835f98c50ad0aa11fed546d096364b8.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Frank Willett, a research scientist on the project at Stanford University in California, said the approach opened the door to decoding other imagined actions, such as 10-finger touch typing and attempted speech for patients who had permanently lost their voices. “Instead of detecting letters, the algorithm would be detecting syllables, or rather phonemes, the fundamental unit of speech,” he said.

Amy Orsborn, an expert in neural engineering at the University of Washington in Seattle, who was not involved in the work, called it “a remarkable advance” in the field.

Scientists have developed numerous software packages and devices to help paralysed people communicate, ranging from speech recognition programs to the muscle-driven cursor system created for the late Cambridge cosmologist Stephen Hawking, who used a screen on which a cursor automatically moved over the letters of the alphabet. To select one, and to build up words, he simply tensed his cheek.

Hawking’s system was a big improvement on the painstaking process used by Jean-Dominique Bauby, the late editor-in-chief of French Elle, to write his 1997 memoir, The Diving Bell and the Butterfly. Bauby had a massive stroke in 1995 that left him “locked-in”, able to blink only his left eyelid. He dictated the entire book by having the freelance editor Claude Mendibil read the alphabet aloud and blinking when she reached the next letter he wanted. For all the progress made since then, researchers have long dreamed of more efficient systems that tapped directly into the brain.

In the case of T5, nine years after his accident he enrolled on a clinical trial called BrainGate2 to investigate the safety of brain-computer interfaces (BCIs). These are small, implantable computer chips that read electrical activity straight from the brain. The man had two computer chips, each the size of a baby aspirin and bearing 100 electrodes, placed on the left side of his brain where neurons send signals to control the right hand.

Willett and his colleagues asked T5 to imagine he was holding a pen above a pad of paper and then to try to write individual letters of the alphabet, even though he could not move his arm or hand. As he tried, they recorded activity from the brain region that would have controlled his movements.

The scientists found that more than 10 years after the accident, the man’s brain still produced distinct patterns of neural activity for each letter and various punctuation marks.

These recordings, and others taken as T5 tried to write out example sentences, were used to train an artificial intelligence algorithm. Many sessions later, the algorithm could predict in real time which letter the man was trying to write with 94.1% accuracy. When the scientists added autocorrect the accuracy rose to 99%.

 

During the sessions, T5 often felt that the imaginary pen in his hand was moving across the page and tracing out letters, and that he could “write” faster if he kept letters small, Willetts said.

Some letters were harder to distinguish than others, according to the study in Nature. The letters r, h and n, for example, require similar movements and so similar brain activity.

One unknown is how well the algorithm might work for languages not based on the Roman alphabet. For example, Tamil has 247 letters, many of which look similar, which could confuse the algorithm.

It will be some time before such brain-reading systems are ready for wider use. In an accompanying commentary, Orsborn and Pavithra Rajeswaran, also at the University of Washington, write that implantable BCIs “will need to provide tremendous performance and usability benefits to justify the expense and risks associated with implanting electrodes into the brain”.

Orsborn said: “This study is a remarkable advance for intracortical brain-computer interfaces because it achieves a huge leap in typing speed and accuracy.

“While this gives us many reasons to be optimistic about the future of BCIs, challenges remain to develop systems that we can use for daily life. For instance, they demonstrated their algorithms in one person for a brief time. How we extend this work to assure the algorithms work well every day and for everyone is an exciting new challenge.”