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Working From Home Helps Disabled People Contribute More Says Sophie, 24

September 1, 2020

For Sophie Washington, who’s been shielding in rural Wales since March, you might have thought the coronavirus pandemic has been overwhelmingly frustrating.

But Sophie, 24, a wheelchair-user, says lockdown has actually allowed her to “contribute more” to her role at a London-based charity.

A Unison survey of more than 4,000 disabled people across the UK found many felt working from home during the coronavirus pandemic improved their wellbeing and more than half felt they’d benefit from doing so in the future.

The union has now called for disabled people to be given the right to work from home after the Covid-19 crisis, with penalties for employers who refuse.

The Department for Work and Pensions said disabled workers could benefit from financial support to work from home due to an extension to its Access to Work scheme.

Sophie, from Llandeilo, Carmarthenshire, has several chronic conditions which forced her to isolate along with her family at their campsite until shielding was paused in Wales on 16 August.

While Sophie’s health prevents her from working in a full-time job, and mobility makes it difficult for her to get out and about, she values her position at Rays of Sunshine – a charity for seriously ill children.

‘Travelling can be painful’

She is an ambassador and is involved in voluntary work, making journeys to the charity’s London office when necessary for meetings.

“Before lockdown I would try and travel down to the meetings, which is not ideal when travelling can be very painful for me and it’s a very long way to go,” she said.

“People say that places are disabled-friendly but until you are actually there in the wheelchair, it’s a completely different story.”

But, Sophie believes “one of the positives” to come out of lockdown is the attitude towards working from home has changed.

“Since lockdown we have had several meetings online and it’s been really great to be involved. I’ve been more well in myself as I haven’t had to make that long journey, and I’ve been able to contribute more, which is a great thing.”

While shielding has been tough, with contact with friends restricted and considerable anxiety around Covid-19, Sophie thinks the possibility of lasting change has helped her see the upside of the pandemic.

“Hopefully, going forward – for myself and a lot of others with mobility issues that can’t reach a traditional work environment as easily – we’ll get some benefits and work from home more now.”

Having the ability to work flexibly, to take short breaks to manage health issues, and having easier access to toilets were among the reasons highlighted for enhancing productivity and wellbeing in the Unison survey.

‘No excuse to turn home working down’

The responses suggested people were less likely to be exhausted and in pain from long commutes.

Half of those who completed the survey had worked from home during the pandemic and almost three-quarters felt they were more productive or as productive working from home compared to their pre-lockdown place of work.

And 54% felt they would benefit from working from home in the future.

Unison assistant general secretary Christina McAnea said: “The pandemic’s demonstrated that there’s no longer any excuse for employers to turn disabled workers down if they request to work from home.”

Disability equality charity Scope said the pandemic had “forced businesses to adapt to flexible home working” and urged employers to embrace change once the pandemic was over.

James Taylor from the charity said: “For many disabled people, flexible home working is something they have been requesting for years with varying degrees of success depending on the employer.

“In the UK there are one million disabled people who want to work but are being denied the opportunity. Done right, inclusive policies such as flexible and remote working can be hugely beneficial for many employees, by allowing them to work in the most effective way for them.”

The UK government said disabled people could now benefit from financial support to work from home due to an extension to its Access to Work scheme.

Those working from home or in the workplace would benefit from extra help including support for special equipment, travel costs and mental health.

Minister for Disabled People, Health and Work, Justin Tomlinson said: “This extension of funding and support will help to protect thousands of jobs, which provide vital independence allowing disabled people to reach their full potential.”

Caden Thompson: Fundraiser With CP Climbs Ben Nevis

September 1, 2020

A seven-year-old boy with cerebral palsy whose parents were told he would never walk has climbed the highest mountain in the British Isles.

The parents of Caeden Thomson, from Corby, Northamptonshire, were also told he would never sit or talk.

He climbed Ben Nevis on Saturday to raise money for the charity Scope.

Caeden’s mother Lisa Thomson said the challenge was “much harder than any of us really expected” but called her son “an absolute legend”.

She said they began climbing at 09:00 BST and reached the top at 17:30, before making their way to the bottom again at 22:30.

Ms Thomson said: “From three quarters up the pathway is just massive piles of boulders and very hard to climb, and even at the top we didn’t think he would make it down.

“There were danger areas where carrying was really difficult, so he did have to walk down a lot of it too. Bless him. We are all super proud of him.”

As of Sunday morning, the family reached their £8,000 target for the disability equality charity.

The family were due to be climbing the 4,413ft (1.3km) Scottish mountain in May but it had to be postponed due to coronavirus.

Before their latest trip Ms Thomson said he decided to take on the challenge as “he wants to give back”.

She said he had undertaken physiotherapy, speech and language therapy and hydrotherapy since he was born.

“Caeden’s life began with huge struggle, stress and a feeling of the unknown and he was very lucky to have had all the help and support he got,” she said.

“He is a very happy boy who tries his very best not to let his disability stop him from keeping up with his two older siblings and his friends.”

London Marathon: Daniel Romanchuk And Manuela Schar Head Wheelchair Fields

September 1, 2020

Defending champions Daniel Romanchuk and Manuela Schar lead the wheelchair fields for the rescheduled London Marathon on Sunday, 4 October.

Last year, American Romanchuk, 22, won the Boston, London, Chicago and New York Marathons.

The only man to beat him in the past 18 months, Switzerland’s Marcel Hug, is among the field, along with eight-time London champion David Weir.

Switzerland’s Schar, 35, is also the world record holder.

She had won nine major marathon races in a row before missing March’s 2020 Tokyo Marathon.

Two-time London Marathon champion, British record holder and 2012 Paralympic silver medallist Shelly Woods makes her first return to the event in four years following the birth of her son, Leo.

The wheelchair races, along with the men’s and women’s elite-only races, will take place on a bio-secure closed course amid the coronavirus pandemic.

The route will consist of laps of about 1.5 miles, taking in The Mall, Horse Guards Parade, Birdcage Walk and Buckingham Palace.

Just one in three deaf children would be in school if facemasks were worn in classrooms, new survey shows

September 1, 2020

A press release:

 

  • Just 36% of parents plan to send their deaf child to school if face masks are introduced, new survey shows.
  • The National Deaf Children’s Society says the Government has placed parents in an impossible position and must take action now.
  • “Every child the same right to a world class education and this does not change just because you are deaf”, the charity says.
  • Case study: “I won’t be able to understand what my teacher is saying.”

Just one in three deaf children across the UK are likely to be in school if facemasks are introduced, a new survey shows.

The research, carried out by the National Deaf Children’s Society among 800 parents of deaf children, shows that just 36% were likely to send their child to school if teachers were asked to wear face masks. A further one in five (19%) were uncertain about what they would do.

Governments across the UK now require face coverings in communal areas in secondary schools or colleges, or will allow schools and colleges to make them compulsory. Whilst face coverings are not currently recommended in classrooms, teachers can choose to wear them.

After dramatic changes in Government policy across the nations, the charity, parents and deaf pupils across the country are now extremely concerned about the lack of clarity and feel this is a slippery slope towards face masks in classrooms – a move some schools have already made.

The National Deaf Children’s Society says that the UK Government has an immediate responsibility to put in place steps for the thousands of deaf children who will be affected by this policy change so that no deaf child is left behind.

The charity also warned that schools and colleges have a legal duty to make sure every child can access their education, meaning they must make every reasonable adjustment necessary to make sure face masks don’t exclude or isolate deaf students.

Ian Noon, Chief Policy Advisor at the National Deaf Children’s Society, said:

“In the decades I’ve worked in education policy, I’ve never seen a policy roll-out that’s happened so quickly and caused so much fear, worry and anguish for deaf students and their families.

“Safety must be the number one priority, but parents will have an agonising choice if face masks are worn in classrooms. Either they send their child to school to face isolation, loneliness and a daily battle to understand their teacher, or they get fined for keeping them at home.

“Every child has the same right to a world class education, so the Government must buy and distribute clear face masks to schools with deaf pupils. We also need more investment in transformational technology to make sure every individual child is getting the tailored support they need to succeed.

“Deaf children are already facing the challenge of their educational lifetimes to catch-up after lockdown and school closures. They cannot be let down yet again.”

Polly, 15, from London, is severely to profoundly deaf.

“As I’m going into Year 11 in September, I’m especially concerned about face masks in schools. I’ve already missed most of my first year of GCSEs because of COVID-19 and I worry lots of my learning next year will be missed because of face masks.

“I use a radio aid in lessons, but I still rely on lip reading and speech clarity to learn effectively. Face masks remove both of these options and it means I won’t be able to understand what my teacher is saying.

“There’s also a possibility that pupils will be asked to wear face masks in communal areas, which is an even bigger issue because the levels of background noise already make it extremely difficult for me, or any deaf person, to have a conversation. It will mean I can’t lip read and can’t follow what my friends are saying, which could lead to me feeling isolated, something no young person needs after months of lockdown.

“I understand why teaching unions are standing up for teachers’ rights and campaigning for face masks in schools. I just want people to understand the impact on deaf young people before any decisions are made.”

James Partridge Obituary

August 28, 2020

James Partridge, who has died aged 67 from cancer, did much to help people with facial disfigurements live with pride and to transform public attitudes. As a burns survivor himself from a car fire, he pioneered the movement for face equality by founding the organisations Changing Faces and Face Equality International.

In December 1970 he had just accepted a place at Oxford University after studying at Clifton college, Bristol. But severe burns to his face and much of his body necessitated five months in hospital and a further five years of complex surgeries.

From despair in the aftermath of the accident, James gradually rediscovered hope and the beginnings of a way forward. He took his degree in philosophy, politics and economics at University College, Oxford, graduating in 1975. Friends there were very supportive, and he learned techniques for coping with intrusive attention: “Keep your eyes looking forward, do not let your chin drop, sanction the staring without reacting to it.”

Then he took an MSc in medical demography, relating disease and mortality to the structures of populations, at the London School of Hygiene and Tropical Medicine. In parallel came his first job, as a research assistant in health economics at St Thomas’ hospital in London. At his interview, one of the panel said: “I see you have had a lot of plastic surgery. Do you think you will be needing some more?” James quickly replied: “Why – do you think I need more?”

In 1978 he married Carrie (Caroline) Schofield. After a spell as a research fellow at Guy’s hospital, in 1979 he moved to Carrie’s native Guernsey to run a farm with her, and later also worked as an economics teacher at the Ladies college, St Peter Port. In 1990 his book Changing Faces: The Challenge of Facial Disfigurement appeared, and two years later he founded Changing Faces, which became the UK’s leading charity for anyone with a scar, mark or condition that affects their appearance; this is more than 500,000 people in the UK alone.

Its approach depends on providing specialist psychosocial support and to lead the way in campaigning for face equality – the fair and equal treatment of all, irrespective of appearance. James’s campaigns led to ensuring that facial disfigurement was included in the Disability Discrimination Act 1995 and more recently in the 2010 Equality Act.

An influential figure in the disability sector, he co-created a unique awareness course called Dining With a Difference, introducing corporate chief executives and their boards to disability opinion formers.

James believed that professionals played a key role in helping people adjust to their changed appearance; whether it was surgeons, doctors, teachers or HR departments, they all needed to become skilled in creating a society where face equality was at its heart.

He led Changing Faces for 25 years, building up a germ of an idea to an organisation with far-reaching international impact. As a former treasurer of Changing Faces and a friend, I found James generous, demanding and loyal.

Persistent in asking for what was needed, he deployed an irresistible charm. When the TV series Downton Abbey ran a storyline about a first world war burns victim that jarred, James immediately got in touch. He did so with such grace that the cast all offered their unqualified support and hosted two wonderful fund-raising evenings.

He enabled many people whose inclination might have been to hide from the world to find confidence and to be visible. In 2009, he read the lunchtime television news bulletin on Channel 5 for a week as part of the charity’s campaign work. “I live with my very distinctive face with pride,” he said. His ambition was for all those with some sort of facial difference to feel the same.

Born in Chipping Sodbury, Wiltshire, and brought up in Flax Bourton, near Bristol, James was the son of Sir John Partridge, a chairman of the Imperial Tobacco Group, and his wife Johnnie (Joan, nee Johnson). Family life was vitally important to James, and he imbued his three children with his own drive and can-do philosophy.

As farmers, he and Carrie started with organic vegetables, then gradually built up a dairy herd of pedigree Guernsey cows. James brought his customary passion to the boards of many island organisations, including the Business Disability Forum.

The media round that accompanied the Changing Faces book brought James into contact with Nicola Rumsey of the University of the West of England, Bristol, when they were both guests on Gloria Hunniford’s programme on Radio 2. They found that they had similar ideas, and James developed programmes with the NHS, businesses and the government. From these came the development of the charity, and James’s family moved to Redland, Bristol.

A Changing Faces research unit was established at UWE Bristol in 1992, and it led to the creation six years later of the Centre for Appearance Research. James received honorary doctorates from UWE Bristol in 1999 and Bristol University in 2005. In 2002 he was appointed OBE.

His understanding of the power of collective action led him in 2018 to launch Face Equality International, and it now has 38 member organisations around the world. By this time he was undergoing cancer treatment, but still hosted its first conference. This year he published his second book, Face It: Facial Disfigurement and My Fight For Face Equality – part memoir, part manual and part manifesto for change.

James is survived by Carrie, their children, Simon, Charlotte and Harriet, six grandchildren and his sisters, Alison and Clare.

• James Richard John Partridge, disability rights campaigner and organiser, born 30 October 1952; died 16 August 2020

BREAKING: Japanese PM Shinzo Abe Resigns Due To Ulcerative Colitis

August 28, 2020

Japanese PM Shinzo Abe has announced his resignation for health reasons.

He said he did not want his illness to get in the way of decision making, and apologised to the Japanese people for failing to complete his term in office.

The 65 year old has suffered for many years from ulcerative colitis, an inflammatory bowel disease, but he said his condition had worsened recently.

Last year, he became Japan’s longest serving prime minister. His current period in office began in 2012.

In 2007 he resigned abruptly from an earlier term as prime minister because of his struggles with ulcerative colitis, a chronic condition that he has lived with since he was a teenager.

Mr Abe has a reputation as a staunch conservative and nationalist, and for stimulating growth with his aggressive economic policy known as “Abenomics”.

 

He has strengthened Japan’s defences and boosted military spending, but has been unable to revise the constitution’s pacifist Article 9, which bans a standing army for anything other than self-defence.

What did Mr Abe say?

The prime minister said his health started to decline as his ulcerative colitis made a resurgence around the middle of July.

He was now receiving a new treatment for the condition which had to be administered on a regular basis and would not give him enough time to carry out his prime ministerial functions, he added.

He said he could not make any mistakes in terms of important decision making, and therefore had decided to step down.

“I made a judgement I should not continue my job as a prime minister,” he said.

“I would like to sincerely apologise to the people of Japan for leaving my post with one year left in my term of office, and amid the coronavirus woes, while various policies are still in the process of being implemented,” he added, making a bow.

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Stability and scandal

By Yuko Kato, Digital editor, BBC News Japan

Prime Minister Abe has long suffered from chronic ulcerative colitis. The disease forced him to resign in 2007 – the first time he headed the government.

Now, after weeks of speculation about him being absent from the public eye despite a worrying uptick in Japan’s coronavirus cases, he is resigning yet again due to the same illness.

As the longest-serving Japanese prime minister, he leaves behind a legacy of stability and a strong centralised power base that allowed forceful stimulus policies to revive the economy. He also improved relations with the US by courting President Donald Trump, often on the golf course.

Yet his government was also mired in scandal, including talk of favouritism and wilful destruction of public records. When the pandemic struck, his responses were often criticised as being slow, ineffective, and out of touch.

And perhaps importantly for Mr Abe, his cherished – and highly controversial – wish to revise Japan’s pacifist constitution under his watch, has come to naught, at least for now.

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What happens now?

It is not clear whether Mr Abe’s resignation is immediate, or whether he will remain in post until a successor is chosen.

Under Japanese law, an acting prime minister would step in temporarily if Mr Abe were unable to perform his role, with no limits on how long they can stay in post.

Deputy Prime Minister Taro Aso, who is also finance minister, is first in line, followed by Chief Cabinet Secretary Yoshihide Suga.

An acting prime minister cannot call a snap election but they lead on other matters such as treaties and budgets until a new party leader and premier is chosen.

Whether or not Mr Abe remains in post for now, his announcement will have automatically triggered a vote within his party to replace him as president.

This election would be followed by a parliamentary vote to elect a new prime minister.

The winner would hold the post until the end of Mr Abe’s term in September 2021.

Rising Phoenix Review

August 28, 2020

Presumably, the makers of this documentary about Paralympic athletes were expecting its release to coincide with the Tokyo games this year, only for them to be postponed because of Covid-19. Hopefully, this partly makes up for the postponement, given that it celebrates the Paralympics and the fortitude and determination of these differently abled athletes, each of whom has a compelling story to tell.

At one point, the charismatic Italian fencing champion Bebe Vio observes that when you see athletes at the Olympics waiting to compete, it often looks as if they all have the same kind of body. Paralympics athletes, on the other hand, each look dramatically different from each other: some have one leg, some have no legs, some have all their limbs but can’t walk, and so on. That range and variety is reflected in the personal histories recounted here.

Some of the athletes were born this way, while others lost limbs due to childhood disease, accidents or even, in the case of runner and long-jumper Jean Baptise Alaize, from injuries caused by machetes during the Burundi civil war. Only the most callous could resist welling up as Alaize describes seeing his own mother killed in front of him when he was three years old, and how he coped with the trauma by learning to run. British runner Jonnie Peacock is a more jovial figure but just as impressive. Indeed, they are all very impressive.

That said, the film would have been more effective if its relentlessly uplifting score didn’t keep figuratively prodding the viewer in the chest, telling us to feel moved, dammit. Likewise, the editing is annoyingly frenetic at times, and you long for a more measured approach that would allow you to appreciate the athletes’ skills, instead of seeing their prowess chopped up into tiny snippets of footage.

Man With CP Attacked In Scotland After Night Out

August 27, 2020

A disabled man was knocked out of his wheelchair and left unconscious in a “scary” attack during a night out.

Karl Dean, who has cerebral palsy, was on his way home from The Bank pub when he was assaulted on Holderness Road in Hull, at about 23:30 on Sunday.

His sister Karen Carroll said he was left concussed with a “nasty gash on his head” after he was “pulled out of the wheelchair from behind”.

A 20-year-old man from Hull was arrested on Wednesday evening.

Mr Dean said the attack “won’t stop me from going out”.

Ms Carroll said her brother had seen the perpetrator run off before two friends helped him back in his wheelchair and took him home.

“I was just shocked,” she said. “He can’t defend himself, why would you pick on him? He was really shook up, he’s scared.”

She said the attack had also left her brother without a voice as the talking device installed on his wheelchair had been damaged, leaving him unable to communicate.

“He’s got to get someone to speak for him because he’s kind of lost his voice.”

She said the head injury also prevented him from using a “head-pointer”, which allows him to use the computer.

Mr Dean said the attack will not prevent him going out to see his friends at the pub on Sunday evenings.

He appealed to the man who carried out the attack to hand himself in.

“Why did he do it to me? It could be worse next time.”

Humberside Police said a man had been arrested in connection with the assault of a vulnerable disabled man.

Supt Matthew Peach said: “The man will be questioned in relation to the incident where the victim was pushed out of his wheelchair causing not only facial injuries but severe distress to him.

“Officers continue to support the victim who is being very supportive of our investigation and we also want to thank the public for their messages of support and well wishes for the victim.”

Sean Dilley Catches Disablist Abuse On BodyCam

August 27, 2020

Zoom Socials And Specialist Tech: Starting Uni Online As A Disabled Student

August 27, 2020

While not all students are happy about the shift to online learning this year, it’s widely seen as good news for the nearly 100,000 disabled students studying at English unis. “We’ve been asking universities for years to study online,” says Aleksandra Mroczek, a disabled second-year journalist student at Newcastle University.

Sana Ali, wellbeing officer at the University of Leicester’s students’ union, says that although the opportunity to study online will be welcomed, this means that students will be more reliant on tech than before. Universities will need to provide access to reliable hardware for those who can’t afford it. Mroczek, who uses specialist software such as Adobe Premiere, has already invested in a new laptop that can run the programs, but this won’t be possible for all students.

If you have a disability, rest assured that all universities will put a support plan in place. This will include letting the relevant school know about requirements that need to be met to ensure you’re given the same tuition. This includes establishing deadlines for assessed work, and the possibility of extensions based on your needs. The uni will also check in regularly with you to make sure you’re being given all the support you need.

At Ali’s university, Leicester, there’s a specialist accessibility centre, which runs meetings with new students to identify their needs, whether that includes a support worker, or extra programs installed on their computers such as screen readers. At Newcastle, Mroczek received an email before arriving on campus from a student disability adviser. Some unis will contact you first, but if you don’t hear from them make sure you reach out.

“Disabled students should do the best they can to understand the support that they require and be clear to institutions on this,” advises a spokesperson for the National Union of Students. “We would advise any disabled student who doesn’t feel that they are getting the support they require to contact their students’ union.”

When it comes to socialising during the pandemic, there are silver linings for disabled students. Despite big advances in recent years, a lot of traditional student activities haven’t always been as inclusive as they should be. The move online may allow students to participate more frequently and readily in events and socials held over Zoom or Teams. “It’s important, now we’ve explored the digital realm, we should continue for our disabled students,” says Ali. “When we get back on to campus, people will forget that it’s a necessity for some.”

LTA Wheelchair Tennis Series: BBC To Stream Warm-Up Tournament To US Open

August 27, 2020

Britain’s US Open hopefuls will return to the match court for the first time since before the coronavirus pandemic at the LTA Wheelchair Tennis Series.

Paralympic medallists Alfie Hewett, Gordon Reid, Jordanne Whiley and Lucy Shuker will be among those competing on 1-2 September.

The tournament at the National Tennis Centre has been developed as a warm-up to the New York Grand Slam.

It will be streamed live on the BBC iPlayer and BBC Sport website and app.

The BBC Red Button will also show most of the action across both days.

“I can’t wait to get back out playing matches again after what has been a really challenging time for so many of us the last few months,” said defending US Open singles and doubles champion Hewett.

Scott Lloyd, chief executive of the LTA, added: “Great Britain has had tremendous success in wheelchair tennis in recent years and the LTA Wheelchair Tennis Series will be vital in helping our players prepare for their return to international competition, including at the US Open next month.”

Also featuring in the men’s and women’s draws at the behind-closed-doors tournament will be Dermot Bailey and Louise Hunt as they also prepare for the return of the Wheelchair Tennis World Tour on 16 September.

The US Open wheelchair tennis tournament will take place from 10 to 13 September at Flushing Meadows.

Girls Aloud’s Sarah Harding Has Breast Cancer

August 26, 2020

I was a bit of a fan of Girls Aloud in my teenage years. I wish her well.

https://twitter.com/SarahNHarding/status/1298561582167982082

Access Rating- An App To Rate Disability Access

August 26, 2020

Same Difference has been asked to publicise Access Rating. This new app lets users rate and discuss disability access in bars, hotels and restaurants across the UK.

With lockdown ending, disabled people need more support than ever to leave their homes and enjoy themselves. An app that rates accessibility seems more important than ever to us now.

Access Rating is available at all appstores.

LOCAL THEATRE COMPANY THAT MAKES SHOWS FOR DISABLED AUDIENCES AIMS TO RAISE CASH TO CREATE A PERMANENT HOME AFTER LOCKDOWN HELPED THEM TO REACH A WORLDWIDE AUDIENCE.

August 26, 2020

A press release:

 

Head2Head Sensory Theatre, a specialist theatre charity from Ashtead in Surrey have discovered that the current lockdown has actually enabled them to connect with a much wider audience. The charity, which normally spends the majority of the year developing and touring shows for disabled people of all ages, has had to rethink how to reach its core audience during lockdown. After much thought they decided to put their latest show online as it was impossible to take it on the road. The decision has paid off as their specially tailored shows have now been viewed by families not only across the UK but around the world. With this in mind, the charity has decided that now is the perfect time to focus on raising funds in order to create a purpose-built hub from which to reach even more families.

Since its inception in 2006, it has been the dream of the charity and its founders to one day develop a permanent, uniquely designed base from which to produce their ground-breaking work. Head2Head are about to launch a fund raising campaign to realise this dream. A permanent base will enable the company to reach even more disabled young people who have never had the opportunity to experience the wonder of theatre in its many forms. The vision of the charity is to be able to provide an innovative, educational, arts-focussed space that will include a sensory garden, dance studio, theatre space and life skills arena (for people transitioning from special school education) as part of its remit.

 

“As part of our on-line performances  viewers are encouraged to go on a treasure hunt to find household items that will make the show interactive and sensory.  In addition, we have launched sessions hosted on Zoom that are linked to past productions and presented by familiar characters. These have been very popular with families and children have been able to explore the beach, organise a tea party and share the adventures of Mr Toad – all from the comfort and safety of their own homes. The sessions allow the children to enjoy messy multi-sensory play, songs, and chants. Activities have been supported by advance packs, so that families and children can prepare for these immersive experiences and get the most from them.

As one parent said, “We’ve been shielding since March and haven’t been outside in 20 weeks. Things are ‘going back to normal’ (apparently) but we just don’t feel it’s safe enough for our special family and we just can’t risk it. We’ve been feeling very left behind and alone. We are so grateful for an exciting accessible activity to look forward to, thanks to our favourite people at Head2Head!”

We are continually looking at ways to adapt our work and provide more for the families that depend upon us.”

Head2Head CEO Kevin Robins

 

 

www.h2hsensorytheatre.com    |    head2headtheatre    |    @h2htheatre

NDCS Raises Serious Concerns Over Face Masks In Schools

August 26, 2020

A press release:

The National Deaf Children’s Society has responded to the idea of face masks being used in schools and colleges.

Ian Noon, Chief Policy Advisor at the National Deaf Children’s Society, said:
“Face masks in education would have serious consequences for the UK’s 50,000 deaf children. For many, there may be little benefit in even attending school or college because they won’t understand their teachers and classmates, with loneliness and isolation a tragic result.
“Public health must always be the priority, so if face masks are introduced, schools and colleges must be ready to meet deaf pupils’ needs by investing in clear face masks, making every reasonable adjustment possible and urgently discussing the best way forward with specialist teachers, parents and deaf pupils themselves.
“Education is a right, not a privilege, and this does not change because you’re deaf.”

Dylan Freeman: Murder Accused Mum ‘Admitted Killing’

August 25, 2020

A woman admitted killing her severely disabled 10-year-old son in a call to her friend, an inquest has heard.

Police discovered the body of Dylan Freeman, who had autism and Cohen syndrome at his home in Cumberland Park, Acton, on 16 August.

West London Coroner’s Court on Tuesday heard Dylan died after his airways had been restricted by a sponge.

His mother and primary carer, Olga Freeman, appeared at the Old Bailey last week accused of his murder.

Senior coroner Chinyere Inyama said doctors had recently prescribed Ms Freeman antidepressant tablets.

Mr Inyama said: “His mother called a friend in the early hours to state to the friend that she killed her son.”

He said the mother and her friend went to Acton police station in west London and told them what had happened.

The coroner said it appeared Dylan had been administered a sleeping aid.

A sponge was then placed in his mouth, tied with a strap.

Dylan had autism, Cohen syndrome – which is linked to abnormalities on many parts of the body – and other issues.

Dylan’s father, celebrity photographer Dean Freeman, last week described his son as “a beautiful, bright, inquisitive and artistic child who loved to travel, visit art galleries and swim”.

His body was identified four days later by his headteacher.

Mr Inyama gave restriction of the airways as the preliminary cause of death.

There was no other evidence of injuries caused by assault or restraint.

Mr Inyama adjourned the inquest until March 2021, pending the outcome of any legal proceedings.

Ms Freeman is due to appear for a plea and trial preparation hearing at the Old Bailey on 4 November.

Lincolnshire Wheelchair User Says She Was Denied Job Interview

August 25, 2020

A trainee barrister claims she had a job interview cancelled when a law firm found out she used a wheelchair.

Holly Girven, 23, had applied for a job in Sheffield working for a company which provides legal services for BT.

Ms Girven, from North Lincolnshire, asked about wheelchair access but says her online interview was then cancelled as the office was not accessible.

BT said it was “conducting a full investigation”, although the law firm has not yet commented.

Ms Girven said she also had a request to work remotely turned down and described her experience as “upsetting”.

“They had seen my CV,” she said.

“They said… we would like to interview you and then to be rejected for something completely out of my control just seemed really unfair.”

‘People really shocked’

Ms Girven is now calling for a requirement that job adverts should include information such as wheelchair access and whether remote and flexible working is possible.

In a statement BT said: “We take these allegations, and our equal opportunity policies, very seriously, and we expect everyone working with BT to comply with these policies. We’re concerned to hear any allegations where this may not have been the case.”

“We’re conducting a full investigation and will ensure that Holly is kept updated on the progress of that investigation.”

Ms Girven said she was speaking out to raise awareness about the issue.

“When I spoke to people about it a lot of people were really shocked that that still happens,” she said.

“But then speaking to other wheelchair users it’s not a completely uncommon experience.”

The BBC has contacted the law firm involved.

Africa Declared Polio Free

August 25, 2020

Some brilliant news and a brilliant piece of progress that deserves to be celebrated!

Africa is to be declared free from wild polio by the independent body, the Africa Regional Certification Commission.

Polio usually affects children under five, sometimes leading to irreversible paralysis. Death can occur when breathing muscles are affected by the paralysis.

There is no cure but the polio vaccine protects children for life.

The disease is now only found in Afghanistan and Pakistan.

Nigeria is the last African country to be declared free from wild polio, having accounted for more than half of all global cases less than a decade ago.

What is polio and has it now been eradicated in Africa?

Polio is a virus which spreads from person to person, usually through contaminated water. It can lead to paralysis by attacking the nervous system.

Two out of three strains of wild polio virus have been eradicated worldwide. On Tuesday, Africa is to be declared free of the last remaining strain of wild poliovirus.

More than 95% of Africa’s population has now been immunised. This was one of the conditions that the Africa Regional Certification Commission set before declaring the continent free from wild polio.

Now only the vaccine-derived polio virus remains in Africa.

This is a rare form of the virus that mutates from the oral polio vaccine and can then spread to under-immunised communities.

The World Health Organization (WHO) has identified a number of these cases in Nigeria, the Democratic Republic of the Congo, Central African Republic and Angola.

How did Africa eliminate wild polio?

Without a cure a vaccine developed in 1952 by Dr Jonas Salk gave hope that children could be protected from the disease. In 1961, Albert Sabin pioneered the oral polio vaccine which has been used in most national immunisation programmes around the world.

In 1996 poliovirus paralysed more than 75,000 children across the continent – every country was affected.

That year Nelson Mandela launched the “Kick Polio Out of Africa” programme, mobilising millions of health workers who went village-to-village to hand-deliver vaccines.

Since 1996 nine billion oral polio vaccines have been provided, averting an estimated 1.8 million cases of wild poliovirus.

What have the challenges been?

The last communities at risk of polio live in some of the most complicated places to deliver immunisation campaigns.

Nigeria is the last country in Africa to have reported a case of wild polio – in Borno state in Nigeria’s remote north-east, and the epicentre of the Boko Haram insurrection, in 2016.

At the time it was a frustrating set-back as the country had made huge progress and had gone two years without any cases being identified.

Outside Nigeria, the last place to have seen a case of polio was in the Puntland region of Somalia in 2014.

Conflict with the Islamist militant group Boko Haram has made parts of Nigeria particularly difficult to reach, Borno state in particular.

More than two million people have been displaced by the fighting. Frontline workers, 95% of whom are women, managed to navigate areas of conflict like Lake Chad by boat and deliver vaccines to remote communities.

Widespread rumours and misinformation about the vaccine have also slowed down immunisation efforts.

In 2003, Kano and a number of other northern states suspended immunisations following reports by Muslim religious leaders that the vaccine was contaminated with an anti-fertility agent as part of an American plot to make Muslim women infertile. Laboratory tests by Nigerian scientists dismissed the accusations.

Vaccine campaigns resumed the following year, but the rumours persisted. In 2013 nine female polio vaccinators were killed in two shootings thought to be carried out by Boko Haram at health centres in Kano.

It has taken decades to achieve eradication and overcome suspicion around the vaccine.

How polio survivors made a difference

Winning the trust of communities has been key.

Misbahu Lawan Didi, president of the Nigerian Polio Survivors Association, says that the role of survivors has been crucial in persuading people to accept the campaign.

Image caption Misbahu Lawan Didi has worked hard to persuade sceptical parents to allow their children to have the vaccine

“Many rejected the polio vaccine, but they see how much we struggle to reach them, sometimes crawling large distances, to speak to them. We ask them: ‘Don’t you think it is important for you to protect you child not to be like us?'”

From polio survivors, to traditional and religious leaders, school teachers, parents, volunteers and health workers, a huge coalition developed to defeat polio. Working together they travelled to remote communities to immunise children.

How serious is polio?

Polio, or poliomyelitis, mainly affects children aged under five.

Initial symptoms include fever, fatigue, headache, vomiting, stiffness of the neck and pains in the limbs. It also invades the nervous system and can cause total paralysis in a matter of hours.

One in 200 infections leads to irreversible paralysis. Among those paralysed, 5% to 10% of people die when their breathing muscles become immobilised.

Could wild polio return?

Polio can be easily imported into a country that is polio free and from there it can spread rapidly among under-immunised populations.

This happened in Angola, which despite decades of civil war, defeated polio in 2001.

The country remained free from polio for four years until 2005 when a number of cases were thought to have been brought in from outside the country.

The WHO says that it is important countries remain vigilant and avoid complacency until there is global eradication.

If they let down their defence by failing to vaccinate, then wild polio could once again begin to spread quickly.

For all types of polio to be eliminated, including vaccine-derived polio, vaccination efforts will need to continue alongside surveillance, to protect children from being paralysed by the disease in the future.

Locked Down And Shut Out

August 25, 2020

Lockdown confined everyone to their homes but for some disabled people it has continued even as the country opens up.

Vicky Haylott lives near Edinburgh with her husband and three children.

She says her life was pretty normal before lockdown with the “slight complication” that she is blind, as is her husband and eldest son.

Vicky says the family, including seven-year-old twins Blake and Freya, who are fully-sighted, never let their disabilities hold them back.

“It was never a case of ‘we can’t go there because we can’t see’ because if the kids needed to be somewhere we found a way to get there,” she says.

‘We can’t social distance’

However, Vicky says the new public health rules and physical distancing, where the layout of familiar places has fundamentally changed, have caused her problems she has never faced before.

“Coming out of lockdown has been much harder than being in full lockdown,” she says.

“For those of us with no vision, we can’t social distance, so the measures put in place now are impossible for us to adhere to.

“It traps us because the constant nerves and worrying about whether you’re going to accidentally walk into someone or get run over by a bicycle, or not be able to find the queue for a shop.

“I’d have to rely heavily on the children which I’ve never done. They’re my children, I look after them, and I never want them to be my eyes, that’s not their job in life at all.”

She says people with disabilities have learned their own methods to navigate their way through the world.

“If those strategies are taken away very suddenly, that person can then be faced with an unmanageable situation,” she says.

“It’s not just difficult for a blind person to social distance, it is actually not possible if you are completely blind.”

‘I feel like I’m on a different planet’

Post-lockdown life has raised many questions for Vicky, including questioning her place in the world.

She says she has never felt so blind before and has less confidence as a result of the lockdown changes.

Vicky says she had never really been “fussed” about not being able to see.

“It never made me feel too far behind everyone else,” she says. “But now I feel as if I’m not only behind everyone else but I’m on a different planet.

“Whilst social distancing continues I would never advise any of my blind friends to have children. Whereas before, I was very much an advocate for it.”

Katy Orr is 14 and lives in Ayrshire.

Her sight is limited to some peripheral vision in her left eye.

She too led an active life before lockdown.

Katy loved being outside, walking the dog, helping her gran in the garden, grooming and riding horses. The lockdown world has impacted on Katy’s self-confidence.

“I’m actually terrified now to go out,” she says. “Now I don’t know where I’m going, whether people are going to get into my two metres or I’m going to get in theirs and if I do I don’t know how they are going to react.

“So I’m absolutely terrified now going to the shops.”

‘It’s wiped out her independence’

Mum Lindsay says Katy was enthusiastic about being independent before lockdown and would be roaming around a shop on her own. Now Katy barely leaves her side.

“It’s wiped out her independence,” her mum says. “The mental impact of losing that is crippling to her. And you can really see it in her behaviour. It’s sad to see.”

Sally Witcher, chief executive of Inclusion Scotland, says not enough consideration was given to disabled people and their complex needs when lockdown came into effect, and this is having a continued impact now we are coming out of it.

“Clearly this has not been an easy time for everyone, but the situation that very many disabled people have found themselves in has been in a whole other league of awfulness,” she says.

“Disabled people have been abandoned. They feel forgotten and the responses that have sometimes been developed to support people haven’t helped, or haven’t been adequate, and haven’t recognised the needs that disabled people have.”

IPC Decision ‘Violates Rights’ Of Wheelchair Basketball Players, Says Global Athlete

August 24, 2020

The International Paralympic Committee’s decision to declare some wheelchair basketball players ineligible for the Tokyo Paralympics “grossly violates the athletes’ rights”, says Global Athlete.

The international athlete-led movement has called on the IPC to allow all team members who qualified for Tokyo 2020 to play at next year’s rescheduled Games.

It comes after the sport’s governing body was told it needed to change its classification regulations to comply with the IPC’s code.

In doing so, the IPC required the International Wheelchair Basketball Federation (IWBF) to reclassify players and, as a result, exclude some who no longer met the new criteria.

The IPC warned that failure by the IWBF to act could result in the sport being removed from future Paralympics, including next year’s rescheduled Tokyo Games.

“Athlete groups have taken notice of the IPC’s decision to change athlete classification rules at the end of a Paralympic cycle, resulting in a direct and drastic impact on athletes,” Global Athlete said in an open letter.

“These athletes have sacrificed and worked tirelessly for years to qualify for the 2020 Tokyo Games.

“The unilateral decision made by the IPC to remove players from their teams who rightfully qualified for the Tokyo 2020 Paralympics is illegal and violates the athletes’ fundamental rights.

“A broad consensus exists among athletes and legal advisors internationally that the belated reassessment of certain players is unlawful and grossly violates the athletes’ rights. Thus, the IPC’s attempts need to be vigorously opposed, and the issue must be resolved expeditiously.”

In July, Great Britain’s George Bates told BBC Sport how he may have to consider having his leg amputated to continue his international career as he would be deemed ineligible to play by the IPC’s classification code.

It is a decision also being considered by GB Academy player Oscar Knight, who has the same condition – complex regional pain syndrome (CRPS) – as Bates.

Athletes who have a lower limb amputation are among those eligible to compete.

International players are classified between 1.0 (most impaired) and 4.5 (least impaired), and the IPC required all 4.0 and 4.5 players to go through reclassification before Tokyo. Bates was originally classified as a 4.5 player.

In a statement to BBC Sport, the IPC said: “Since the Code was approved in 2015, the IPC has been working with all International Federations to ensure compliance with the Code by the deadline of 1 January 2018.

“Despite our best efforts and continued offers of support, the IWBF has been reluctant to align with the IPC Athlete Classification Code or propose acceptable solutions to the matter.

“No sport is above the rules and in January 2020 the IPC’s frustration with the IWBF reached breaking point. The IPC Governing Board, half of which is made up of former Para athletes, acted with the whole athlete community’s best interests at heart.”

It added that it wanted to “protect the rights of all eligible wheelchair basketball players”.

What is the background?

The IWBF defines eligible impairments differently to those agreed by the IPC general assembly in 2015 and defined in the IPC athlete classification code.

The IPC believes this has led to athletes competing who have impairments which are not covered by the IPC code. It wants all athletes due to compete in Tokyo in the 4.0 and 4.5 classes – for the least-impaired athletes – to have their eligibility reassessed to decide whether they can play at the Games.

Those whose impairments are not eligible under the IPC code will not be allowed to compete.

The IPC says if the requested action plan is not being complied with, the sport could be excluded from the Tokyo Games. It has also been excluded from the Paris 2024 Games and will only be brought back in if the IWBF becomes fully compliant with the IPC’s regulations by no later than the end of August 2021.

Wheelchair basketball has been part of the Paralympic movement since the first Games in Rome in 1960. It is the third-biggest at the Games, with 264 athletes due to compete in Tokyo across male and female competitions.

Paralympians Have Been Hit Hard – Cockroft

August 24, 2020

Five-time Paralympic champion wheelchair racer Hannah Cockroft talks to BBC Breakfast’s Sally Nugent about the Tokyo Paralympic Games being rescheduled and the impact of the coronavirus pandemic on her and her sport.

Many Are Still Shielding With No End In Sight

August 24, 2020

Some households are still in unofficial lockdown because they just don’t feel safe enough to go out, says BBC disability correspondent Nikki Fox.

During lockdown, a very good friend of mine called me out of the blue. We were talking about this strange new world and the sadness we felt about all the lives lost to this hideous virus.

Then she said something that threw me at first, although now it makes complete sense.

My friend deals with anxiety on a daily basis and she explained to me how lockdown was doing wonders for her. She felt much less anxious. She liked being told what she could and couldn’t do. My friend felt safe at home with her family, happy to play by someone else’s rules for a time… it made the pressures of her everyday life disappear.

Now most people I spoke to at the time were thrown by the sudden change to our everyday lives. Lockdown piled on the pressure for most people I know and for many deaf and disabled people, there were some very pressing, immediate concerns that needed addressing.

How do we do the things we need to do, to get through each day? Will our personal assistants, who help disabled people with everyday tasks, want to work through lockdown? Do we want them to work? How do we get hold of some personal protective equipment (PPE) for those helping us? How do blind people nip to the shops to get food when they’re unable to socially distance and not all online shopping websites are fully accessible? What about deaf people… how do you lip-read when everyone is wearing a face mask?

These problems impacted many disabled people whether they were told to shield or not.

That brings me on to the not-so-catchy, controversially titled, Extremely Clinically Vulnerable list, made up of more than 2.2 million people. Not all have a disability – this group also included people going through certain cancer treatments, those on immunosuppressants and people with severe asthma, for example.

Everyone on the list was told stay put at home, to not go out, not even for exercise.

You only have to do a quick internet search to get your head around the fact that this list was not without its problems. Many believed they should have been on it. Some were on it when they shouldn’t.

My sister Rachel and I are the perfect example of this. As far as we know we have the same disability, muscular dystrophy. I wasn’t sent an official letter but Rachel was. We think it’s probably because she works too hard, doesn’t take her vitamins and has a habit of letting colds turn into chest infections, whereas I am practically Gwyneth Paltrow.

Despite its well-documented challenges, to put it mildly, the shielding list did bring comfort to many.

But on 1 August, the national shielding schemes ended in England and Scotland, and on 16 August in Wales. And with that went most of the protections the shielding scheme offered.

Despite this, thousands are still in unofficial lockdown because they just don’t feel safe enough to go out.

Carolyn Brathwaite has been isolating with her daughter Azaria and the rest of the family since mid-March because Azaria has an ultra-rare genetic condition called NAA10 syndrome. It’s so rare only a handful of people in the world have it and as a result, very little is known about it.

Azaria has complex disabilities and struggles to understand the world around her. There was no way the family were taking any chances with Covid-19. In fact, the moment Carolyn heard about coronavirus she took both her daughters straight out of school and bulk-ordered all of Azaria’s medication.

Now I know Carolyn, she’s my best mate’s cousin. I’d love to have met up with her in person to talk about shielding – but only immediate family and Azaria’s carer have entered their house since the start of lockdown.

She tells me two of Azaria’s hospital consultants advised Carolyn to shield her daughter until there’s a vaccine.

When I ask her to explain what that’s like – to carry on in isolation, albeit unofficially, with bare minimum support, whilst others enjoy greater freedoms – she says: “I think everyone has these worries about this virus but the extra step and intensity that we have to protect her is really hard. Nothing comes into the house until we have cleaned it or quarantined some things we don’t need to use straight away.”

I’ve seen what Carolyn does. She sent us home videos of her spending hours scrubbing her food shop on her doorstep. She won’t allow a box of cereal to enter her home until every inch of it has been sanitised.

What makes life so tough now is the family are without all the support and therapies Azaria needs and the pressures of constant care, coupled with the inability to explain to your daughter what’s going on in the world, why it’s suddenly changed, why she’s no longer going to school, to the park for a swing. Why her therapists are all on a computer…

Carolyn tells me it was “without a doubt one of the hardest periods they’ve been through as a family”.

And there’s no real end in sight. As the world starts to open up, they remain isolated. And that’s hard.

Like many people who were told to shield, the food parcels were a huge help, especially in the early days when there was more chance of me running a marathon than of getting an online food slot.

But what really made a difference to Carolyn and her family was that being an official shielder, meant that her hubby was able stop going to work and for a short time, Carolyn felt safe.

Now shielding’s over, however, the family have to make their own decisions on how best to stay safe. That support has gone. Carolyn’s husband has returned to work, but there is still a choice to be made about whether the girls should go back to school.

And they’re not alone…

I also meet a brilliantly positive young man called Ross Lannon. He kept himself thoroughly entertained during lockdown by creating a coronavirus parody of Vanessa Carlton’s hit song A Thousand Miles. It’s a lot of fun. As is he.

Ross has spinal muscular atrophy and was sent an official shielding letter. Even though shielding has ended, he still doesn’t feel safe enough to start venturing out. The self-confessed “foodie” would love to go to a restaurant, but the fluctuating infection rates don’t fill him with enough confidence to eat out.

The end of shielding, however, brought about bigger problems for Ross. He was forced to make a difficult decision – go back to work and risk his health, or leave his job and stay safe.

He tells me: “It’s the worst position I think anyone could be in because as a disabled person I pride myself on being employed for the past eight years…. Without any protection now with shielding stopping I don’t really have a leg to stand on, it was either you go back to work or you leave.” In the end he felt he had no choice other than to leave.

The former chairman of the Equality and Human Rights Commission, David Isaac, felt so strongly about this that he spoke to me just before he stood down.

‘I am anxious that the shielding provisions came to an end very abruptly,” he said.

“There’s not enough info about the future, the food parcels have stopped and we urgently need to address that because we can’t leave that group of people isolated and high and dry.”

The UK government has defended its decision to pause shielding. It told us average infection rates remain sufficiently low and that its response has been proportionate.

It brings me back to what my friend with anxiety told me -in extraordinarily difficult times, for some, there’s a comfort in being told what you can and can’t do. Disabled people are used to risk-assessing their everyday lives but with something as terrifying as a virus that could end your life, many would welcome some more guidance and a system in place to help. To keep you fed, to back you up if you can’t work.

For the many thousands still self-isolating, the only thing they can rely on is their instincts. As Carolyn says, “It’s a really hard balance you know you find yourself weighing up quality of life versus risk to life.”

She’s not alone in thinking this and like many others, until there’s a vaccine, there’s no end in sight.

 

Rachel Clare, Writer With CP, Releases Second Novel

August 24, 2020

A press release:

 

The Woodcarver of Krakow 

Writer with Cerebral Palsy, Rachel Clare, releases second beautifully written novel charting the journeys of two brothers who are bound by a promise but torn apart by war!

Tadeusz and Jacek Lewandowski are the closest of brothers. After the tragedy of losing their mother and with their father in the Polish army, they are raised by their grandfather, a skilled woodcraftsman. They enjoy an idyllic childhood in the Tatra Mountains.

Relying on each other for everything, Tad and Jacek have never been apart. That is, until, the Nazi and Russian armies close in on Poland in September 1939, forcing Tad to leave behind his degree course and everyone he loves to escape across occupied Europe.

Tad’s journey is fraught with danger, but he battles on using the life-skills Jacek taught him growing up. Eventually reaching Blackpool, he joins the Polish Air Force. The war against the Nazis is just beginning and the aftermath of war has a huge impact on the lives of both brothers in more ways than one…

Rachel Clare lives in Lancaster, has a BA (Hons) in English and French, a MA in Modern Languages Research and a Postgraduate Diploma in Newspaper Journalism. She teaches French in a Primary School and has always enjoyed writing. Roses of Marrakech (2018) was her debut novel, inspired by her travels and family history.

Rachel says, “I have been on many holidays to Poland and have wanted to write a novel set there for many years. My mother, who grew up in Blackpool, told me of the strong links between the Polish Air Force in World War II and the town. From my research of that period, I found a lot of interesting facts and places in Blackpool with connections to the airmen and have therefore used them as a basis for this novel.”

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Second Wheelchair Basketballer Considers Leg Amputation After Rule Change

August 21, 2020

It seems this is a big story that should be shared and covered widely. This is the second such story we’ve covered in less than four weeks. We note that Oscar Knight is awaiting the outcome of the first case, George Bates.

A wheelchair basketball player deemed ineligible to play after a rule change says he is considering having his legs amputated.

GB Academy player Oscar Knight, 17, from Plymouth, suffers from complex regional pain syndrome (CRPS).

He said new participation measures did not recognise his “poorly understood” condition and have made him “not the right kind of disabled” to compete.

The International Paralympics Committee (IPC) has been approached for comment.

In January, the committee told wheelchair basketball’s governing body, the IWBF, it needed to change its classification regulations in order to comply with the new code.

Under the IPC’s criteria, pain or hypermobility of joints are not eligible impairments for athletes, but amputated lower limbs are.

Oscar, who has played in three international games for the GB Academy in the last two years, said the “heartbreaking” change meant he was ineligible to play the sport at a senior level.

‘Want to chop my legs off’

He said wheelchair basketball had helped him to come to terms with his condition, which causes persistent severe pain, since he was diagnosed at the age of nine.

“It has brought such great things to my life, and a potential career, but now that’s been taken away,” Oscar said.

Mr Knight said he was “not surprised” by the decision because his condition was so poorly understood.

“I shouldn’t have to amputate my legs to continue in a sport just so I’m the right kind of disabled”, he said.

“It just makes no sense.

“My mental health has been pretty terrible and has made me want to chop them off”.

The teenager said his decision would depend on the outcome of GB player George Bates, who has initiated an appeal against the IPC and is also considering amputation.

“This sport has brought me such happiness and mental stability”, Oscar said.

“Being able to go to a high level in wheelchair basketball was such a driver for me, and to potentially have that taken away is heartbreaking”.

Lego- In Braille

August 21, 2020

A big thanks from everyone at Same Difference to Lego for launching Braille bricks. This will allow children who need them to feel wanted and included by the rest of the world while they are being used, and other children to learn from an early age that there is nothing wrong with needing to read Braille.

Lego is launching a new version of its plastic bricks featuring braille in seven countries.

The new bricks are the same shape as the regular ones, but the studs on top have been rearranged.

“The bricks are moulded so that the studs on top reflect individual letters and numbers in the braille alphabet while remaining fully compatible with the Lego system,” a statement from the Danish toymaker said.

The bricks also feature a printed version of the symbol or letter.

Lego said it wanted to encourage blind and visually impaired children to explore new ways of learning to read and write.

“With thousands of audio books and computer programmes on the market today, fewer young people are learning braille. Yet individuals with blindness or impaired vision all over the world rely on braille to work, study and enjoy their daily lives to the fullest,” the company said.

The new bricks will be sold first in Brazil, Britain, Denmark, France, Germany, Norway and the US, before being extended to another 13 countries in early 2021.

In 2019, Lego allocated 25% of its earnings to the Lego Foundation, which helps disadvantaged children.

I’m Deaf. When Mask-Wearing Came Along, I Had To Rebuild My World

August 21, 2020

Since mask-wearing began, my world has disappeared. I was born partially deaf, and masks prevent me from lipreading and using facial cues to communicate.

I’m not alone. Over 460 million people worldwide have disabling hearing loss according to the World Health Organization. So how are people who are d/Deaf (lower case refers to the physical condition of deafness, capital D refers to the Deaf community) or hard of hearing surviving mask mandates?

It also makes me wonder, is my mask less safe because of my disability?

The most common mask on the market right now is the ear band, with loops to slip over ears. But not everyone has two ears and some people who are hard of hearing also have difficulty wearing these masks. “They get tangled up in the tubes of my hearing aid,” said Jannie Marshall in Ohio, retired from providing services to developmentally disabled adults. “It’s hell to put masks on, wear them, take them off with hearing aids,” said Meg Day, a poet and assistant professor at Franklin Marshall College in Pennsylvania. “Your hearing aids go flying if you’re not careful … The [mask] elastic has to sit perfectly to not interfere with the hearing aid’s microphone.”

You can attach masks with paperclips or even plastic toys in the back of the head. But ear band masks are not designed to be worn this way, and the fit is very tight, creating tension and headaches. When I tried them, the paperclips got caught in my hair.

The best solution I found are “ear-savers,” strips with toggles to attach mask loops, originally designed for essential workers. It’s not a perfect solution, or a fast one. I have to look in a mirror to ensure the best fit. I have to delegate all door-answering – anything that requires a mask quickly – to my partner, who is hearing. Most of us already panic at unannounced visits during the pandemic, but for people who are hard of hearing, the extra stress is a considerable burden.

The likelihood of me not understanding a masked stranger is high. Callie Adair, a graduate student in social work, told me that “masks make everyone sound more muffled, so even my good hearing days become bad hearing days if I have to go out”.

Evan Adair, an MBA student and Callie’s spouse, says that masks “turned my life around 180 degrees”. Both Callie and Evan use smartphone notepad features to help communicate with strangers, but not everyone has this technology – or the patience to use it.

“People get frustrated because they’re unprepared to communicate via text or paper and pen, so they remove their mask. It’s scary,” Day said. “Every encounter is charged.”

A common occurrence in my experience is that people don’t assume a young-looking person could be hard of hearing. And when I don’t respond, they respond in anger.

“Maintaining social distancing in stores is hard when we can’t hear you coming up behind us,” Callie Adair said. Hearing strangers can mistake a d/Deaf or hard of hearing person’s silence for permission to enter their space.

To get a head start on those situations, I purchased buttons on Etsy with messages such as: Your mask prevents me from reading your lips. Please be patient. But I do worry about issues of safety and vulnerability in announcing my disability to strangers, including the potential for mistreatment, even abuse. d/Deaf and hard of hearing people are more likely than hearing people to be sexually assaulted or experience other violence.

Along with buttons, there is now a market on Etsy for “hearing aid masks” that wrap or tie around the head. One seller, when I reached out to her, told me: “You are the exact reason I have been custom-making masks.”

There are also several kinds and brands of masks with see-through centers, designed to assist in lipreading and American Sign Language (ASL utilizes more than just the hands but the entire body, including facial expressions).

These masks are not without issues. “They fogged up immediately and stuck to your lips and looked, well, kind of scary,” Day said about a vinyl mask. Day prefers ClearMask, a deaf-cofounded company, whose masks are entirely clear, have straps, and a foam seal.

And although some workers are taking the initiative on their own to wear masks with clear centers to assist people, they’re in the minority. I’ve never seen a mask like that in real life – not on retail workers in my neighborhood, not on medical personnel.

“It’s kind of pointless that I have an entire box of these [clear masks] when I’m not the one who needs to be wearing them,” Day said. “My dentist needs a box and my colleagues need a box. Other folks need to play a part in providing access.”

“One thing I really wish the hearing society would know and understand is that communication difficulty increased during the pandemic, and there is nothing we can do to fix it,” Evan Adair said.

As a hard of hearing person, I have never felt more lonely than during mask-mandates. At the same time, I believe hearing people are realizing how much we all rely on facial, physical and other cues to get by. “My heart goes out to everyone who is restricted now and is suffering in isolation. I’m accustomed to it,” Marshall said.

A good reminder for hearing people at all times, not only during a pandemic, is don’t just use your voice to announce your presence – wave, make eye contact. Be open to communicating in different ways with strangers. Realize that not everyone may be exactly like you. And maybe ask your doctors, teachers or co-workers to utilize clear masks or similar products.

When the pandemic is controlled, and the masks come off, I hope hearing people remember how much of the world revolves around community and communicating. I hope they still consider us, who deserve to be heard.

Whitley Bay Mask-Exempt Woman Urges ‘More Understanding’

August 20, 2020

A woman who is exempt from wearing a mask said the abuse she has received while shopping without one has left her afraid to leave the house.

Louise Sharp said she needs to stay uncovered so she can communicate with her daughter who is autistic and would otherwise get distressed.

However, after negative comments from another shopper sparked a panic attack two weeks ago, she can no longer shop.

She said people should be more understanding of those with exemptions.

Ms Sharp told BBC Newcastle she was accosted at her local supermarket in Whitley Bay and when she tried to explain that she was exempt due to both her panic and anxiety disorder as well her daughter’s autism, the person still said she was “selfish”.

She ended up suffering from a panic attack and had to leave.

‘Understand exemptions’

“I haven’t been to any shop since, not once, I don’t have the confidence”, she said.

“It’s not right, I now feel under lockdown more than before.

“People feel they’ve got the authority to question anyone, and I feel more should be done to address the issue of exemption and to give people respect.

“Please understand there are exemptions and respect those exemptions.”

Face coverings must be worn in any enclosed public space in England, although there are exemptions including:

  • Children under the age of 11.
  • Those unable to put on or wear a face covering because of a physical or mental illness or disability.
  • People for whom wearing or removing a face covering will cause severe distress.
  • Anyone assisting someone who relies on lip reading to communicate.

Her pleas are being echoed by charities including the National Autistic Society, Asthma UK and the Alzheimer’s Society.

Dylan Freeman, Son Of Dean Freeman, Died Of Restricted Airways

August 19, 2020

The 10-year-old son of a celebrity photographer allegedly killed by his mother died from restriction of his airways, a court has heard.

Dylan Freeman’s body was discovered in Cumberland Park, Acton, west London, on Sunday.

His mother, 40-year-old Russian national Olga Freeman, has been charged with murder and appeared at the Old Bailey earlier.

At the hearing, Dylan’s cause of death was revealed by prosecutor Joel Smith.

Judge Mark Lucraft QC remanded Mrs Freeman in custody to appear at the Old Bailey again on 4 November.

Dylan’s father Dean Freeman, who was in Spain when his ex-wife allegedly killed their son, paid tribute to him earlier this week.

Mr Freeman, whose work includes campaigns with Bollywood star Deepika Padukone and Hollywood actor Bradley Cooper, said in a statement on Monday: “Dylan was a beautiful, bright, inquisitive and artistic child who loved to travel, visit art galleries and swim.

“We travelled extensively over the years together, spending such memorable time in places including Brazil, France and Spain.

“I can’t begin to comprehend his loss.”

Girl, Two, With Down’s Syndrome Models For JoJo Maman Bébé

August 19, 2020

A two-year-old girl with Down’s syndrome who has thrived while under lockdown has been chosen to model for children’s wear brand JoJo Maman Bébé.

Eleanor Manton, from Leamington Spa, Warwickshire, has been shielding with her mother Helen and father Craig since the beginning of the pandemic.

In May, a video of Eleanor walking unaided for the first time received thousands of likes on Facebook.

Pictures of the toddler have appeared in the autumn/winter 2020 catalogue.

Mrs Manton said Eleanor had “really progressed” during lockdown. Her husband was furloughed and she said that helped.

“That’s the reason why Eleanor is progressing so much, she has interaction with us both all the time,” she said.

Mrs Manton said she was “screaming and jumping for joy” when the retailer approached her about the modelling opportunity.

“Hopefully more companies are going to be more inclusive,” Mrs Manton said.

Due to the lockdown restrictions, JoJo Maman Bébé had to cancel photo shoots and instead posted out clothing and shoes for Eleanor to model.

Mrs Manton said she spent a couple of days taking pictures of her daughter for the company.

“If children like Eleanor are seen in the fashion industry, it’s going to keep raising awareness… and when people see children like Eleanor it’s not a shock to them,” she said.

Mrs Manton said Eleanor recognises herself in the photos and says “that’s me”.

“I just want to raise awareness, that she is just like any other little girl and that having a child with Down’s syndrome is a positive thing, not a negative,” she added.

Parkinsons- From The Age Of 7

August 19, 2020

A man who has lived with Parkinson’s since he was a child has been nominated for national award.

Matt Eagles, from Cheshire, was first diagnosed with the condition at the age of seven and has dedicated his life to encouraging people to be positive.

He said he is “absolutely made up” to be shortlisted for the Positive Role Model Award at the National Diversity Awards.

“I just try and be the best version of me that I possibly can,” he said.

Artificial intelligence set to transform the lives of 2 million people with sight loss

August 18, 2020

A press release:

 

17 AUG 2020 – With more than two million people living with sight loss in the UK today, the demand for voice-activated technology has never been greater. The RNIB expects that over four million people will be living with sight loss in the UK by the year 2050, with those affected more likely to experience reduced wellbeing and independence compared to the rest of the population.

 

A technology to improve accessibility for two million is the UK’s first fully voice-activated smart phone, media player and personal assistant for people with sight loss – RealSAM In Your Pocket (www.inyourpocket.net/). Developed with input from the blind community, RealSAM In Your Pocket features a simple accessible voice interface, where users can ask ‘SAM’ for help in everyday life. This includes turning on its inbuilt video magnifier when reading labels while shopping, or its custom-built navigation software that allows users to bookmark landmarks when travelling alone and be guided back with direction and distance. SAM also connects directly to Be My Eyes, an online community of over two million volunteers who help people with sight loss through a live video call.

 

Roger Wilson-Hinds has both sight and hearing loss and volunteered as part of the development team for RealSAM In Your Pocket. Commenting on the features that have helped him most during recent months, Roger said “There’s no doubt that RealSAM In Your Pocket was an essential companion to me during the recent lockdown. My wife and I were able to enjoy daily walks, continue to shop for ourselves and stay connected to our grandchildren, without relying on the help of carers”.

 

Roger believes that the possibilities are endless for how artificial intelligence will transform the lives of people with disabilities.  “What I love about the advances we’re seeing with artificial intelligence is that everything is focused on making the user experience simpler. And for people with a disability who want to live independently, this simplicity really is the most important thing”.

 

RealSAM In Your Pocket is the result of a two-year collaboration between the RNIB, O2 and Australian Artificial Intelligence developers, RealThing AI, that identified the need for a portable device, specifically for the visually impaired, that combines technologies to aid safety and independence.

 

To find out more about the RealSAM In Your Pocket please visit www.inyourpocket.net or call 0333 772 7708.

 

Deaf pupils failed by education system for 5th consecutive year

August 18, 2020
A press release:
• Deaf pupils are yet again being let down by a badly-designed, inaccessible education system that does not deliver for them, charity warns.
• On average, deaf children have achieved an entire grade less than their hearing classmates at GCSE for at least the last five years, new analysis of 2019’s figures has revealed.
• The average Attainment 8 score for deaf children in 2019 was 38.6, compared to 49.9 for hearing children.
• The National Deaf Children’s Society says deafness isn’t a learning disability and the results show that education policy is failing deaf children.
• The Government now has a “golden opportunity to right generations of injustices” by providing accessible learning and better support immediately.
Deaf children in England have been failed by the education system for the fifth consecutive year, new analysis has revealed.
The National Deaf Children’s Society says that 2019’s GCSE results show deaf pupils have again achieved an entire grade less than their hearing classmates, with the gap between them now getting wider.
According to the figures, the average Attainment 8 score for deaf children last year was 38.6, compared to 49.9 for hearing children.
In 2018, it was 39.2 for deaf children and 49.8 among hearing children.
The figures, which go back to the introduction of Attainment 8 in 2015, show a gap of an entire grade every year. The charity has also calculated that the current rate of improvement, it will take at least 24 years for deaf and hearing children to achieve the same results.
The charity says that deafness is not a learning disability, so the gap in results is down to ineffective education policy and the Government’s failure to tackle the key challenges affecting deaf children’s education.
Worse still, as deaf pupils anxiously await their grades in 2020, the charity also fears that because coronavirus has severely affected the support available during a crucial period of their education, the gap could grow wider still.
The new data also shows a significant difference in achievement for English and Maths, with less than half of deaf pupils (48.2%) achieving at least a grade 4, compared to almost three quarters of hearing pupils (71%).
The National Deaf Children’s Society says that the problem runs right through the heart of education, with many deaf children finding themselves behind before they even reach secondary school.
Last year less than half (44%) reached the expected standard for reading, writing and maths at Key Stage 2, compared to three quarters (74%) of hearing children.
The charity says deaf children have been seriously disadvantaged because the coronavirus pandemic made it much more difficult for them to get support from the key staff they rely on. In addition, despite the best efforts of schools, many resources offered for learning at home were simply not accessible to deaf pupils due to a lack of subtitles and translation into British Sign Language.
As a result, the charity is calling on the Government to urgently re-examine how it’s providing for deaf children and make sure that any tuition or catch-up lessons are fully accessible.
It also wants the Department for Education to introduce a bursary to train hundreds more specialist teachers to provide crucial one-on-one support for deaf children.
Susan Daniels OBE, Chief Executive of the National Deaf Children’s Society, said:
“This year every child in the country has experienced what it’s like to be excluded from education. For many deaf children, this is the daily reality in a system that is badly designed and consistently lets them down.
“As we build back better, we cannot and must not accept a second rate system for deaf children. No one should be denied a high quality education, but despite successive Governments repeatedly claiming to have the same ambition for every child, deaf children’s GCSE results show that these promises just aren’t being delivered.
“We need our education system to be less combative for parents and more supportive for all, particularly those from low income families, whilst making sure that high quality education is never undermined by the basic challenges deaf children face each and every day, like inaccessible lessons and inadequate communication support.
“This is a golden opportunity to right the injustices deaf children have been facing for generations. The Government must now show it has the guts to take on the challenge and deliver for every deaf child in every corner of the country.”

Mother Charged With Murder Of Dylan Freeman, 10 As His Real Parent Pays Tribute

August 17, 2020

The father of a 10-year-old boy found dead in west London has paid tribute to his “beautiful, bright, inquisitive and artistic child”.

Dean Freeman, a celebrity photographer, said he could not “begin to comprehend” the loss of Dylan Freeman, who was discovered at a property in Cumberland Park, Acton, on Sunday.

The boy’s mother Olga Freeman, 40, appeared before magistrates in Uxbridge on Monday charged with Dylan’s murder.

Mr Freeman’s representative said Mr Freeman was in “Spain when he heard the shocking and heart-breaking news, and is beyond devastated”.

They added: “He was a loving and caring father and even though divorced for a number of years, he cherished all the quality time spent with his son.”

In a statement, Mr Freeman said: “Dylan was a beautiful, bright, inquisitive and artistic child who loved to travel, visit art galleries and swim. We travelled extensively over the years together spending such memorable time in places including Brazil, France and Spain. I can’t begin to comprehend his loss.”

The representative added: “Dean has been touched by the messages of support he’s received from friends and asks that the media respects his and his family’s privacy at this awful time.”

Dylan’s body was discovered at the home after a woman walked into a police station to speak to police officers in the early hours of Sunday. 

Neighbours described how Dylan was disabled and struggled with his speech.

Reverend Nick Jones, 61, the rector of Acton, who lives in Cumberland Park, said on Sunday that news of the boy’s death was “shattering”.

He said: “I’m still shaking a bit, it’s hugely upsetting.”

On Monday, the defendant was escorted into the dock by three female security guards. 

When asked to confirm her name, she stood, answered “yes” and hung her head.

During the five-minute hearing, Freeman was told her offence can only be heard at the crown court.

No plea was taken and she did not ask for bail. She will next appear at the Old Bailey on Wednesday.

Digital campaign gets 50,000 Brits learning Sign Language

August 17, 2020

A press release:

13 August 2020: Over 50,000 people have started learning British Sign Language (BSL) thanks to the phenomenal success of a new digital engagement campaign by the disability charity Sense.

‘Sense Sign School’, which launched in May this year, during the UK lockdown, invites the public to sign up for free online classes, taught by Tyrese Dibba, a Deaf and partially sighted 15-year-old student from Birmingham.

The campaign has been promoted on Facebook and Instagram, and everyone that signs-up is taken on an email journey and receives a new BSL video lesson every day, for five days. The initial target was 7k sign-ups over the course of three months, and this was beaten in its first week with 8k sign-ups. The incredible popularity generated national headlines, with Tyrese interviewed on national television, including Sky News.

Sense worked with the creative Agency GOOD to develop the campaign, which aims to break down communication barriers, promote understanding and tackle social isolation amongst disabled people. Loneliness is disproportionately high amongst disabled people, with one in two experiencing it every day. Sense research also shows that one in four Brits avoid conversation with disabled people, because they worry about saying the wrong thing.

Tyrese Dibba’s charismatic performance is credited for the popularity of the campaign.  Tyrese has CHARGE Syndrome, and he and his family have been supported by Sense since he was 6 months old. He receives support from specialist support workers, attends events and participates in Sense Holidays.

Tyrese Dibba, said:

“I want more people to learn to sign, so Deaf people don’t get excluded. You should be able to chat to someone, whatever their disability might be. After all, no one likes feeling left out.”

Sense Director of Engagement, Chris Jarrett, said:

“Hundreds of thousands of people who are Deaf use BSL as their first language, and if more people are able to use it, we can ensure that less people are left out, which is our charity’s mission.

Everyone at Sense is tremendously excited about the campaign and believe it will help us acquire new supporters which will be vital for achieving our ambition of supporting more families and disabled people in future”

GOOD Agency Client Services Director Nilesha Chauvet, said:

“We wanted to create a campaign for Sense that helped people authentically engage with those with disabilities; stepping into their world and experiencing a value exchange that worked both ways.  We wanted to challenge preconceptions and stereotypes. To celebrate our differences rather than hone in on limitations. Tyrese is a star, and he proves that people with disabilities can and should be at the front of campaigns like these.”

Woman, 40, Charged With Murder Of 10-Year-Old Disabled Boy In West London

August 17, 2020

A  woman has been charged with the murder of a 10-year-old boy who was believed to have been severely disabled.

The child’s body was discovered at a home in Cumberland Park, Acton, west London, after a woman walked into a police station in the early hours of Sunday. 

Olga Freeman, 40, has been charged with murder and will appear at Uxbridge Magistrates’ Court on Monday, Scotland Yard said. 

Police believe they know the identity of the boy, who was known to Freeman, according to the force. 

No-one else is being sought in connection with the death.

Reverend Nick Jones, 61, the rector of Acton, who lives in Cumberland Park, said on Sunday that news of the boy’s death was “shattering”.

He said: “I’m still shaking a bit, it’s hugely upsetting.”

Neighbours described how the boy was “wheelchair bound” and struggled with his speech.

Watching The World Open Up For Disabled People

August 17, 2020

When lockdown began, chronic illness meant I’d already been stuck at home for a couple of years. It was my own self-isolation before self-isolation was in the lexicon, except with less sourdough. I won’t say I was used to missing the world outside my bedroom because it is never a thing you truly get used to. House plants are not great conversationalists. A glass of wine in a restaurant is a thing of beauty to long for. But you adapt, because circumstances are demanding like that.

If the pandemic created one shared experience, it was this sense of missing out. Fomo went global and the world got creative to cope. Theatres went online. Museums hosted virtual tours. Work held meetings over Zoom. Musicians streamed gigs live to fans. As a disabled person, the weeks that followed lockdown were like going through Alice’s looking glass.

Overnight, parts of every day living –work, the arts, education, socializing – that had disappeared from disabled people’s lives due to a mix of poor access or health conditions were available again. At a time in which the general population – including disabled people – had never been more restricted, there was a paradoxical sense of freedom. Suddenly, everyone was a little housebound and life opened up because of it.

Lying in bed, YouTube glowing on the screen, I watched the first play I had in years, transported in a flash to New Orleans and King George’s court. Friends and family launched quiz nights; if I wasn’t going out on a Friday night, no one else was either. Art galleries with multiple steps – and no ramp – opened their doors through the laptop. Anyone who has ever been deprived of normal life knows regaining it is about more than simply being able to see a play or gig. It is akin to finding something you’ve lost, as if a part of you comes back with it.

I began to speak to other disabled people experiencing similar things: bosses that had turned them down when they got ill now let employees work from home, universities that banned virtual learning were putting their degrees online. It was frustrating and joyful, obvious and revelatory. The secret was out: the world could be accessible. Inequality was actually a choice.

I’m not sure that realization was my own personal pandemic epiphany – perhaps it would be more accurate to say it was the world’s. Disabled people, after all, always knew life could become accessible with just a few changes. It just took a global pandemic for everyone else to notice.

As bars, the office and museums are slowly reopening across the world, it would be easy to go back to business as usual – to forget what society has learnt, to abandon the minority now that the majority are catered for. Major theatres have already stopped their online showings. Employees working from home are starting to feel insecure about losing their jobs. But if we all have to go through this crisis, society may as well make some gains along the way. The new normal could be more accessible than the old.

Jacob Thomas: Former Paralympian Boccia Player Dies Aged 25

August 17, 2020

Former Paralympic boccia player Jacob Thomas has died at the age of 25.

Welshman Thomas featured in the team and individual events at the 2012 Paralympic Games in London.

He was British champion four times in boccia’s BC3 classification, and won silver and bronze medals at the 2014 World Championship.

In a post on social media, Sport Wales described Thomas as an “inspirational sportsperson who will be hugely missed”.

Disability Sport Wales also paid tribute on social media, saying: “Jacob Thomas was a totally inspirational young man and Paralympic boccia player.

“So many in the DSW (Disability Sport Wales) family were saddened to hear of his passing yesterday.”

Thomas, from Bethesda in Pembrokeshire, was flanked when competing by his father Michael, who was his performance assistant.

He retired from boccia in 2016, when he was the reigning British champion in his classification.

I’m Disabled But Was Told I Won’t Receive Critical Care If I Get Covid. It’s Terrifying

August 14, 2020

Towards the end of last year, I’d just got my life back on track after a long stay in hospital. I was discharged with round-the-clock care that transformed my life.

I am disabled and the care package I was on before I was admitted to hospital didn’t provide enough support; I was admitted to a ward with problems associated with a lack of care, including malnutrition and serious pressure sores. But then I was given a personal health budget from my local authority, with responsibility for employing care workers, rotas, management, training and everything else you can think of.

As a result I got off benefits and into employment – but then Covid struck.

By February I was alert to the threat that coronavirus posed to me. I’m in a wheelchair. I use a ventilation machine at night and by early March, I could see that if I were to catch Covid-19, I’d be in serious trouble.

I had to furlough one valued care worker because she also worked in a busy shop. I felt the risk was too high. Another went abroad and unfortunately got coronavirus there, though she returned safe and well. I had to make it clear to the other four members of my team that if they had the slightest hint of symptoms, they weren’t to come in. This was difficult because I can only pay statutory sick pay, which isn’t enough to live on. I have a really supportive team so was relieved when they accepted this.

At the end of March, I discussed the risks with my GP, who made it clear I was in a very difficult situation, where the factors that made me extremely vulnerable to coronavirus would also put me at low priority for critical care if services were overwhelmed, and that, if necessary, ventilators would be prioritised for people most likely to survive.

I was left feeling devastated. I did as much research as I could around how to treat people with coronavirus. I did everything I could to set up intensive care-level treatment in my flat, for fear that I would catch it at a time when services were too overwhelmed to treat me. It was a terrifying and frenzied period.

Some of my care workers fell ill with suspected coronavirus and I found my rota couldn’t manage if someone was off sick for three weeks. I requested that for every shift someone worked, they do another on call in order to ensure I had cover when people were off. This ate into people’s weeks and risked them overworking if others went off sick.

As a result, I was without care for a number of hours on several occasions. It’s a really significant risk for me to be on my own.

I struggled to get personal protective equipment (PPE) for my staff. I spoke to the council, which had very limited PPE. I was lucky that my girlfriend managed to source some. I made shifts 24-hours long instead of the usual 10-15 hours in order to minimise handover and potential exposure, and everyone had to change into clothes I provided on entering the flat.

I really struggled. I felt resentful because after I was in hospital last year, I got out and had a short period of having a care plan that worked for me and let me live a normal life for the first time ever. Coronavirus hit and I was inside for three months.

Now I feel as if I no longer know what’s safe. I don’t know if things are getting better. The world is opening up but when is the next wave of the virus coming? I’ve started going out late at night, since shielding ended. I’ve tried to develop a new normal but it’s really stressful.

I’m terrified – if I catch Covid-19, will any of my care workers come in? They’ve all got people in their lives that they won’t want to infect. I honestly don’t know what I would do in their situation.

I am so appreciative of my team. Some of them worked incredibly long shifts when another person called in sick. This pandemic has shown the absolute dedication of so many people who work in care but I feel let down by support services, the local authority and the government because of the lack of preparation, support, and information.

There’s been a network of disabled people swapping tips and we all feel the same. There’s a lot of misinformation and panic going around. We’re not being given accurate and honest information, or the resources we need to protect ourselves.

The media and wider society never talk about how many deaths of disabled people there have been from coronavirus. The disabled people’s movement has been highlighting for years about how care homes are used as a way of warehousing people until they die. This pandemic has underlined how afraid I am of being put in a care home – something I have been threatened with, due to the cost of my care package. In a care home I may not have survived this. In my own home, so far I’ve stayed safe.

Rising Phoenix

August 14, 2020

An exclusive first look at the Paralympics documentary Rising Phoenix, which will be launching on Netflix on 26 August. The film focuses on the history of the movement and the unbelievable stories of its athletes, featuring interviews with elite competitors.

Elite Sportswomen Survey: ‘The Most I’ve Ever Won Is A Leg Of Ham’ – Gallagher On Gender Pay Disparity

August 13, 2020

Winter Paralympic gold medallist Kelly Gallagher says the difference in financial remuneration and sponsorship between men and women in sport is “ridiculous”.

The visually-impaired Northern Ireland skier, who won Britain’s first-ever Winter Paralympics gold at Sochi in 2014, was responding to the findings from a major BBC survey of women’s sport.

The UK-wide BBC Elite British Sportswomen’s Survey was sent to 1,068 women in 39 different sports and received 537 responses.

In the survey, women speak out about “horrific abuse” on social media, constant comments on their appearance and sexist remarks questioning their right to play sport.

Gallagher, 35, won gold in the super-G category in Sochi and is also a multiple World Championship medallist, but says getting fair financial reward for her efforts has been impossible.

“Charlotte [Evans, her guide] and I won a race in Andorra and we got our medals,” Gallagher told BBC Radio Ulster’s Sportsound Extra Time.

“It was early in the day so it was decided to have another race and we won again – the local butcher sponsored it so we won a leg of ham.

“It’s the most I’ve ever won and it was wonderful to win something that had a value to it. Someone said it was worth a lot of euros but we couldn’t take it out of the country so gave it away.

“Able-bodied women’s and men’s ski racing are the same in terms of remuneration – that’s what we should be having and I just feel its ridiculous that we don’t win the same, especially in disabled sport, there’s no real prize money and there’s a real lack of sponsorship.”

Gallagher added: “It might be socially and corporately responsible to sponsor an impaired athlete but what are the companies and businesses going to get – they may as well sponsor of local children’s football team because the reach they are going to get is so much bigger.

“That puts a lot of pressure on us as women to raise our profile and do all these social media things – when actually what we want to do is concentrate on our sport and then for that to be covered.

“Not from a features point of view, in terms of what we’re up to in our personal life or what brand of clothes we are wearing, but about our actual sport.”

Gallagher also highlighted the lack of media coverage and body image issues impacting women’s sport while drawing from her own personal experience after giving birth to her first child in March.

“You can’t schedule having a baby between Winter Games as it’s too dangerous in my sport,” she said.

“I put off having a child until I reached certain goals and that was competing in the 2018 Games – it’s just something men don’t have to schedule in in that way.

“Although it’s difficult to leave your children for sport and be away quite a lot, it’s not the physically detrimental thing to your sport like whenever you are carrying a baby.

“I haven’t been on snow in over a year and going from a C-section to recovery is difficult but maybe now is the time to gently get back into the sport and back on snow.”

Click here to hear the full Kelly Gallagher interview on Sportsound Extra Time.

Google Lookout: App Reads Grocery Labels For Blind People

August 13, 2020

Google’s AI can now identify food in the supermarket, in a move designed to help the visually impaired.

It is part of Google’s Lookout app, which aims to help those with low or no vision identify things around them.

A new update has added the ability for a computer voice to say aloud what food it thinks a person is holding based on its visual appearance.

One UK blindness charity welcomed the move, saying it could help boost blind people’s independence.

Google says the feature will “be able to distinguish between a can of corn and a can of green beans”.

Eye-catching, not easy

Many apps, such as calorie trackers, have long used product barcodes to identify what you’re eating. Google says Lookout is also using image recognition to identify the product from its packaging.

The app, for Android phones, has some two million “popular products” in a database it stores on the phone – and this catalogue changes depending on where the user is in the world, a post on Google’s AI blog said.

In a kitchen cupboard test by a BBC reporter, the app had no difficulty in recognising a popular brand of American hot sauce, or another similar product from Thailand. It could also correctly read spices, jars and tins from British supermarkets – as well as imported Australian favourite Vegemite.

But it fared less well on fresh produce or containers with irregular shapes, such as onions, potatoes, tubes of tomato paste and bags of flour.

If it had trouble, the app’s voice asked the user to twist the package to another angle – but still failed on several items.

The UK’s Royal National Institute of Blind People (RNIB) gave a cautious welcome to the new feature.

“Food labels can be challenging for anyone with a visual impairment, as they are often designed to be eye-catching rather than easy to read,” said Robin Spinks from the charity.

“Ideally, we would like to see accessibility built into the design process for labels so that they are easier to navigate for partially sighted people.”

But along with other similar apps – such as Be My Eyes and NaviLens, which are also available on iPhones – it “can help boost independence for people with sight loss by identifying products quickly and easily”.

Lookout uses similar technology to Google Lens, the app that can identify what a smartphone camera is looking at and show the user more information. It already had a mode that would read any text it was pointed at, and an “explore mode” that identifies objects and text.

Launching the app last year, Google recommended placing a smartphone in a front shirt pocket or on a lanyard around the neck so the camera could identify things directly in front of it.

Another new function added in the update is a scan document feature, which takes a photo of letters and other documents and sends it to a screen reader to be read aloud.

Google also says it has made improvements to the app based on feedback from visually impaired users.

The Schoolgirl Who Broke Her Neck And Became A Racing Driver

August 13, 2020

Nathalie McGloin is the world’s only female tetraplegic racing driver.

But as a teenager she had no interest in cars or racing and had plans to become a lawyer.

Then, two weeks into her A levels, a car crash changed everything. She broke her neck and lost the full use of her arms and legs.

Nathalie spent 11 months in hospital, which she describes as similar to 2020’s lockdown.

Although it was far from easy, she says the time enabled her to figure out her passions and what she really wanted to do which eventually led her to a professional racing career.

If you, or someone you know, has received exam results or is about to make big life decisions, this is the perfect podcast to listen to with plenty of tips on managing a future when plans are turned upside down.

Lockdown Has Brought Families Of Learning Disabled People To Their Knees

August 12, 2020

As Britain comes slowly out of lockdown, many of us are enjoying getting back to doing the things we’ve missed so much over the past few months: spending more time with loved ones, barbecues in the garden, hitting the shops, perhaps even taking a trip to the coast.

But for many families of people with a learning disability, cuts to their social care support mean lockdown is a continuing, gruelling reality, with no end in sight.

The social care sector was already fragile and overstretched long before the pandemic hit, but new data released by Mencap shows that further cuts during the coronavirus crisis have had a disastrous impact on people with a learning disability and their families, leaving many feeling forgotten and abandoned.

We surveyed more than 1,000 family members and carers of people with a learning disability in the UK; 69% reported further cuts to their social care support during lockdown, with more than half saying they have struggled to cope. Many are feeling isolated and let down by the system. They’ve told us about the devastating impact of lockdown on their loved ones as they watch them losing some life skills, which impacts negatively on the independence they have worked so hard to gain. In extreme cases, we have heard about people with learning disabilities shutting down completely and refusing to communicate.

One mother told us that her son can’t be left alone for even two minutes for her to visit the toilet. In an effort to keep him safe, she has resorted to urinating on the floor. Another said she spends more than 100 hours a week caring for her son who is physically very strong and can display challenging behaviour. She has no support. She is sleep-deprived and exhausted, having been left to cope completely on her own.

The provision of vital social care allows many people with a learning disability to live independent lives. It gives family carers the support they desperately need. For some people, this may mean receiving round-the-clock personal care in their home.

But for many, it is about providing a lifeline to take part in meaningful activities. Day services are run locally across the country to provide social opportunities for people with a learning disability. They combat loneliness, help develop important life skills, hone talents and offer friendship in a safe and trusted environment. Importantly, they give people a chance to do the things they enjoy – something we all missed during lockdown.

Families providing round-the-clock care and buckling under the pressure also rely on this support for much-needed respite from their caring duties.

Inevitably, some services have had to close to keep people safe. We at Mencap worked closely with local authorities and activity groups to move as many as possible online at the height of the crisis: virtual quizzes, digital discos – you name it, we’ve done it.

Slowly, face to face options are beginning to reopen, but provision will not be anywhere near what it was at the beginning of the year.

There is personal protective equipment (PPE) to consider, extra cleaning of premises, the requirement for more frequent activities with smaller groups. The government has offered detailed guidance for pubs, hairdressers and nail salons, but omitted these settings completely, so it’s a struggle to work out the safest way to operate.

When I listen to the heartbreaking stories of families who have been left on their knees by this crisis, I ask myself what sort of society we want to live in.

It shouldn’t have taken a worldwide pandemic to bring the UK’s social care crisis to national attention – but it has. If the system was struggling before, it is truly broken now. This crisis has resulted in some people’s needs increasing exponentially, while costs soar due to increased safety measures such as the provision of PPE – and yet the cuts keep coming.

We have waited a long time to hear about the prime minister’s promised social care reform. As important as the issues are relating to older people are and how as a society we provide for better care in old age, almost half of the social care budget in the UK is spent on people of working age, a fair proportion of whom have a learning disability.

The social care sector needs significant investment and a bold plan for reform to help prepare for the months and years to come.

The people and communities we serve and our colleagues who have been the heroes throughout this crisis deserve better.

A Shielder’s Story Of Cautious Freedom

August 12, 2020

I am one of those people who were told that from 1 August we no longer needed to shield to protect ourselves from the coronavirus.

While you might assume that, having been trapped inside our homes for the past 18 weeks, we would embrace our newfound freedom with enthusiasm, the reality remains far from it.

I have only ventured out three times in the first week and remain cautious. The guidance almost suggests that we should open our doors, simply forget the rhetoric we’ve had drilled into us over the past few months and get back to “real life”. But for those of us whose pre-existing medical conditions greatly increase the risk from Covid-19, we are naturally a little hesitant to embrace this sweeping change. If I lived in Wales, I’d still be shielding until 16 August.

But on the first official day of freedom in England and Scotland, I, my husband and our dog ventured to Cambridgeshire to see my parents and siblings. One of my sisters and both my parent work with the NHS. It was the first time all of us had been together since our wedding in December. It has been incredibly hard not to see each other for such a long time. While admittedly it was initially a little strange ensuring we all remained socially distanced, we were in the garden throughout and, thankfully, for once the British weather cooperated. It felt, dare I say, in many ways almost normal.

My second trip was a visit to our local open-air garden centre late on a Sunday. Having not experienced a shopping environment for months I was surprised at how few people were wearing masks. While the streets and garden centre were quiet, allowing me and my husband to keep our distance from anyone, sadly the trip confirmed to us that, unless essential, we won’t be making any further visits to shops for now while we can’t rely on others to play their part and comply.

Lastly, I saw a friend. Meeting in the park, we sat safely distanced from each other and anyone else. I drove there and back to avoid passing people on the walk, and as many people are starting to return to the office, the park was quiet. It was a welcome change from the early morning and late-at-night dog walks we have been doing throughout lockdown out of necessity, but also to preserve our sanity these last few months.

Speaking to other high-risk shielders it seems experiences have been mixed. While a few have felt safe sitting outside cafes and restaurants or popping into shops, the majority are yet to take these steps.

Some have had outings to normally quiet coastal locations, now crowded as people holiday in the UK, where social distancing seems completely non-existent. Others, during essential trips to a car mechanic, have found they needed to make several requests for staff to comply with putting on masks and gloves.

Unlike at the start of lockdown, when most people seemed very willing to support those who were shielding, the reality is that many seem to have virtually forgotten the last three months; hugging for pictures on social media, crammed into bars, flouting the use of masks and ignoring ongoing guidance around distancing. They seem oblivious, or indifferent, not only to the risks to themselves, but potentially to those who are more vulnerable around them.

Thankfully, neither myself nor my husband are under pressure to return to the office. I work from home and his employer has been hugely supportive. But many aren’t so lucky. With the guidance now that people should return if their workplaces are deemed “Covid-safe”, vulnerable individuals are, shockingly, having to choose between their work and job security, or their health.

While we all crave some level of normality, for shielders this desire is often overridden by a sense of nervousness. We feara lack of information and support, contradictions between the government guidelines and scientist concerns, and the carte blanche approach to the shielding community who have a whole range of individual vulnerabilities. Throughout the pandemic, in government letters and in the advice online, individuals were told to contact their specialist health teams and independent organisations for advice and support. Yet the reality wasthey could not provide the level of guidance individuals needed or were looking for.

Evidence suggesting that meeting outside is the safest option has encouraged some to try and push themselves to relax a little during what is left of summer but most arechoosing to set their own rules. We are also well aware that the “pause” on shielding may be stopped if infection rates rise, as has already happened in local lockdowns in Leicester, north-west England and Aberdeen.

When shielding was initiated, I discussed with others what we would do once we got our freedom back. We talked about jumping on a plane to somewhere hot, having a big meal out with all our friends and trips to coffee shops. Realistically though, these ideas remain pipe dreams.

The knowledge that, while Covid remains a risk, it is up to us as individuals to remain safe, is in some ways more of a barrier than any official guidance to shield ever could be. While officially the pause button has been hit, for me at least it simply isn’t as easy as pressing the off switch.

• Pippa Kent has cystic fibrosis. She runs Now What Can I Eat on Instagram based on her post-lung transplant journey and the food limitations of immune suppression

SEND back to school: New study to help ease school return for children with special educational needs

August 11, 2020
A press release:
University of Sussex academics have launched a new study to help schools prepare for the return of children with special educational needs under Covid-19 restrictions in the autumn.
Academics in the University’s Department of Education are surveying parents and carers of children with SEND to find out about their experiences of having children out of school during lockdown and their feelings about returning to school in September.
Responses from the survey will be used to draw up recommendations for schools on how to help ease the transition back into school for pupils with SEND.
Dr Christina Hancock, Lecturer In Primary Education at the University of Sussex, said: “The aim of this research is to better understand the experiences of parents and carers of children with SEND across the Covid-19 pandemic. We are seeking parents and carers recommendations regarding the upcoming academic year so that we can share their viewpoints with schools and special educational needs co-ordinators.”
Parents and carers are being asked to respond to a 20 minute survey on their experiences of their children both in and out of school during the past months of pandemic disrupted schooling.
The results of the research study will be used to produce a report with recommendations to inform teachers about good practice in supporting children with SEND not only for the transition back into school but also for future and ongoing support.
The academics are also making plans for follow-up research later in the autumn term to understand how children adapted to the gradual transition back to school.
Dr Jacqui Shepherd, Lecturer in Education at the University of Sussex, said: “Parents and carers have the opportunity to be involved in a really important piece of research that will inform schools and other SEND-related organisations about the experiences of children with SEND during the Covid crisis and the lessons that we have learned. Parents and carers will have the chance to share their views and have an impact on improving practice for children with SEND which, in turn, could improve the education experience for all.

“Many children with SEND face significant challenges with understanding the Covid restrictions, understanding social distancing and making sense of the complete disruption to routine. Other children will have missed out on regular therapies such as physiotherapy, speech therapy, occupational therapy and most families have gone without any respite at all during this time. Returning to school after such a long period of hiatus will be challenging but it can also be used as an opportunity to identify new ways forward for managing and supporting special educational needs in our schools.”

Parents interested in participating in the study can fill out an anonymous, online questionnaire here.

There is also the option for parents to participate by giving their answers over the phone or via an online video link. This can be arranged by contacting J.Shepherd@sussex.ac.uk or C.L.Hancock@sussex.ac.uk.

Meet The Model Agency Fighting Body Fascism

August 11, 2020

“In a world where the mainstream concept of what is and isn’t beautiful becomes increasingly narrow, you have to be young, you have to be thin, you should preferably be blonde, and of course, pale skinned,” lamented Alexander McQueen in his 1998 guest-edited issue of Dazed & Confused. On the cover, model Aimee Mullins stood defiantly in prosthetic legs beside the headline “Fashion-Able?” The question mark was left hanging – challenging readers to recognise a vision of beauty that was unlike anything that had been seen before.

Within the issue, a 14-page fashion editorial was dedicated to models with disabilities. However, despite newspaper reports that the disability diverse photoshoot had broken down “one of the last bastions of body fascism”, very little changed. Two decades after McQueen’s groundbreaking recognition, is the fashion industry finally taking notice?

The ugly myth “diversity doesn’t sell” is being increasingly challenged. Earlier this summer, Gucci unveiled its latest mascara campaign, starring Ellie Goldstein, an 18-year-old model with Down’s syndrome. The response was euphoric. Set against the able-bodied ideals of beauty, the Instagram post racked up 850k likes – tenfold the number on Gucci’s average post.

The sight of Goldstein with a raven flick of Gucci Mascara L’Obscur, offset by this season’s turquoise-encrusted 70s-style dress, became more than an advert for enviable lashes. It was a fresh rallying cry against archaic aesthetic ideals. Dispelling all arguments against inclusivity with aplomb – it was, in the words of the Italian brand, their “biggest liked post EVER”.

Photographer David PD Hyde was chosen to shoot Goldstein, who is signed with the UK-based Zebedee Management, which represents models with disabilities and visual differences. “The project is about embracing beauty in diversity,” Hyde says. As a photographer with a physical disability, he confirms that half the people on the shoot also had disabilities. As a result, the published images achieve a level of sensitive representation that is rare and authentic.

The campaign comes at a time when disabled models are more visible than ever before. Jillian Mercado, for example, has recently featured in the pages of British Vogue.

Research has shown, though, that less than 20% of UK adverts feature minority groups. When it comes to disability representation, the exclusion is even more stark – a fifth of the UK population is recorded as disabled, yet only 0.06% of adverts feature disabled people.

“We hope the Gucci campaign is the tipping point for an inclusion revolution across luxury fashion,” says Laura Johnson, director of Zebedee Management who, as a qualified social worker, has experience working with vulnerable adults and children. She founded the agency with her sister-in-law, Zoe Proctor, with the aim of creating more opportunities for disabled people.

Since launching in 2017, Zebedee has amassed an impressive client base. From high-street stores such as H&M to the luxury womenswear brand Teatum Jones, they are proving that diverse casting is the future. “That said, we move from feelings of fantastic optimism, to disappointment and frustration when we don’t see further bookings pouring in. Often progress feels painfully slow,” says Johnson.

Fashion month is proving hardest to conquer. In the past, Zebedee has not secured any bookings for London fashion week, despite continually making calls to designers, brands and casting teams. “This is very disappointing,” admits Johnson. “Maybe they are worried about practicalities. I really don’t know.”

Every season The Fashion Spot’s Runway Diversity Report tracks inclusivity at fashion week. Whilst it has recorded an overall increase in racial, size, age and gender diversity in recent years, disability is never mentioned. Put simply, there is little to report. It is indicative of the endemic lack of disabled models on the catwalk.

“Twenty-six years ago, there were no disabled models to be seen in mainstream media,” says Louise Dyson. As the founder of an established modelling agency, Dyson was first approached by a wheelchair manufacturer who needed a disabled model for its adverts. But in 1994, there were no professional disabled models, and it sparked a nationwide competition to find suitable candidates. Judged by a panel of fashion editors, photographers and celebrities, the Sunrise Model in a Million contest saw 16 finalists vie for a modelling contract. Overnight, the models became a global news headline – opening up conversations about the underrepresentation of disability in fashion for the first time.

Building on this momentum, Dyson went on to found VisABLE, a pioneering talent agency for disabled models, actors and presenters. Initially, it proved difficult to translate the buzz into work: “When I met with my industry contacts to promote VisABLE models – despite having a friendly reception from everyone and they agreed it was an important idea to embrace diversity – they didn’t offer any bookings.”

One of the barriers facing disability casting is the misconception that models won’t be able to participate in photoshoots. In reality, this isn’t the case. “Booking a disabled model is like booking any model,” says Dyson. “Where required, our highly professional models will take their own assistant and the photographer can get on with their own job without having to worry.”

“Clients only need to make minor changes to ensure that the working environment is suitable,” agrees Johnson. However, casting venues are not always accessible for wheelchair users, and with organisers refusing to offer alternatives, their models automatically lose work. “In time, the industry will be more inclusive, and there’ll be less need for us, but currently, it’s really hard to encourage brands to book disabled models.”

But do agencies such as Zebedee risk segregating disabled models? “I feel like disability is the only minority group where you could get away with that kind of segregation,” says Kelly Knox, who is signed to MiLK Model Management. Born without her lower left arm, Knox is one of a handful of disabled or visually different models signed to a mainstream agency – others include Jillian Mercado and Aaron Philip.

Although Knox praises the inclusive spirit of her current agency, starting out in modelling required huge resilience: “I was told I’d get more work if I wore a prosthetic arm. How hurtful and ableist … basically saying I’ll only be accepted into this industry if I look ‘normal’.” In principal, a disability-friendly agency provides protection from this discrimination.

“Standard agencies have historically shown a woeful duty of care to their models,” says Caryn Franklin, a fashion commentator. “An agency that prioritises body difference is in a better place to advocate for their members with specialised needs.”

Although progress has been made, the fashion industry is still facing criticism about its underrepresentation of marginalised perspectives. Disability is the next frontier. As the Gucci campaign has shown, when fashion opens itself up, everyone takes notice.

Stoke Mandeville Maulers Wheelchair Rugby Club strikes sponsorship deal with leading London law firm Bolt Burdon Kemp to grow club and change lives in local community 

August 11, 2020

A press release:

Stoke Mandeville Maulers Wheelchair Rugby team and law firm Bolt Burdon Kemp are thrilled to announce they have teamed up to provide more equipment and support to current and aspiring wheelchair rugby players in Buckinghamshire – an initiative that improves the lives of people living with a spinal cord injury. 

The law firm will be sponsoring The Maulers this year to introduce initiatives that will further encourage disabled people to lead active and healthy lifestyles in a fun and competitive environment. 

The sponsorship funds will go towards updating their team kit, training venue costs & competition entry fees. 

The Maulers are headed up by twice Paralympian, Bob O’Shea and experienced wheelchair rugby competitor, Ian Hosking. They have a combined experience of 44 years within the sport of wheelchair rugby. The Maulers are based at the Birthplace of the Paralympic Movement, next door to the National Spinal Injury Centre (NSIC) where they continue to support current members, attract new members and work closely with the NSIC encouraging newly injured people into sport.  

Bob and Ian have a longstanding relationship with the Spinal Injury team at Bolt Burdon Kemp, who work hard, campaigning and raising awareness, to ensure an improved quality of life for clients and those affected after a spinal cord injury caused by an accident or medical negligence. The firm has held a number of accessible and inclusive events over the years through Bob and Ian’s company the ‘Wheelchair Rugby Experience’. These events have raised awareness amongst able-bodied people of the experience of using a wheelchair and playing a disability sport.  The experience also raises awareness amongst lawyers who represent those with spinal cord injury. The Spinal Injury team is passionate about clients taking up leisure activities post-injury, as they’ve seen the huge benefits it can have for an individual’s recovery, both for their physical and mental health.  

Bob O’Shea / Ian Hosking at The Maulers said: “The Maulers are hugely thankful to Bolt Burdon Kemp for helping them to be able to continue and grow within the sport of wheelchair rugby. Together we are confident that lives will be positively changed through this partnership. We are looking forward to keep working together with the Spinal Injury Team at Bolt Burdon Kemp to spread the positives that come hand in hand with a healthy and active lifestyle after spinal cord injury.  

Victoria Oliver, associate solicitor at Bolt Burdon Kemp said: ‘We are excited to embark on this new adventure. It is so important that we show people there is life after injury. This partnership will help the club continue their excellent work for people with disabilities in Buckinghamshire. Through our clients, we have seen the direct impact the Club has had on transforming people’s lives, which is why this partnership is so important to the firm. Our work helps get people back into normal life after an accident or injury, and knowing that there are support networks like The Maulers available is invaluable.” 

Surviving Coronavirus- But Living A Nightmare

August 10, 2020

When Jennifer Duddy was admitted to hospital with coronavirus, she said goodbye to her young family wondering if she would ever see them again.

The 32-year-old accountant, who has asthma, first experienced symptoms of the virus in March, but says she was refused tests on several occasions.

Initially, most people with symptoms were told to stay at home and self-isolate.

Her husband, Jamie, also had symptoms, but while his symptoms slowly started to lessen, Jennifer’s got worse and eventually she was admitted to Belfast’s Mater Hospital with breathing difficulties.

She spent seven days there being treated for coronavirus.

When she was discharged, she knew it would take time to recover fully, but was optimistic and excited to again cuddle her eight-year-old daughter, Chloe, and one-year-old son Ryan.

“A lot of tears were shed in those first two months,” Jennifer told BBC News NI.

“I was on so much medication when I was in hospital that you start to feel a lot better but whenever you get out, you obviously can’t have that level of medication home with you, so you just crash back down.”

Months later, she is still experiencing heart palpitations, breathlessness, brain fog, dizziness and extreme fatigue.

“You’re not living a life, you’re just existing,” she said.

“It goes from one day to another and nothing happens, you just want to go to bed.”

Thankfully, Jamie’s mother had moved in to help but Jennifer says that it is “awful, knowing that you are potentially putting someone else’s life at risk”.

“I went two months without even holding Chloe or Ryan and it broke my heart, but then I didn’t even have the energy to talk to them.

“I was so sick I couldn’t even listen to them, I was just exhausted.

“We were one of those families who rarely had a free Saturday and now I don’t even have the energy for a conversation.”

‘An actual living nightmare’

Aside from her other symptoms, Jennifer has continued to lose weight due to regular waves of sickness and loss of appetite.

Doctors suspect she has developed ME, also known as chronic fatigue syndrome, as a result of the virus.

“It has been an actual living nightmare,” said Jennifer.

She has joined online support groups and met many people who are experiencing similar after effects.

“Our lives are completely on hold – we can’t do anything.

“If I’m able to go to the park with the children alone for 15 minutes then it’s been an outstanding day.

“My husband has essentially become a single parent. He does everything. It’s so much stress, mentally and physically.”

As for the future, Jennifer admits that she is worried, especially if people refuse to wear face coverings to try to limit the spread of Covid-19.

On Thursday, the NI Executive announced that face masks would become mandatory in shops and other enclosed spaces from August 10.

She said: “We can’t afford to get coronavirus again.

“It has already caused so much upset to our family, but if people aren’t going to wear masks then we can’t go out.

“I’m asthmatic and my breathing is still not great and I can wear a mask – so for the majority of people, they can too.

“I wish people would see that coronavirus is still out there. Everyone can’t just forget about it and relax.

“If you have the side effects that I have had, your life will be completely on hold.”

‘A lot to learn’

Dr Michael Head, senior research fellow in global health at the University of Southampton, told the BBC that while little is known at this stage about long-term effects of the virus, stories like Jennifer’s are becoming increasingly common.

He said that “a lot of people have reported feeling terrible even months later, so it is going to be a big problem for policy makers and the health service going forward”.

“There is evidence emerging that there are lots of longer side effects,” said Dr Head.

“It can pretty much affect every organ in the body, it is a nasty virus and there is still a lot to learn about it.”

Chemo, Cancer And Coronavirus- And Sex, Dating And Romance

August 10, 2020

Keiligh Baker was diagnosed with chronic leukaemia three years ago and became single just before the pandemic hit – now she’s decided to give internet dating a go, but how does that work when cancer’s involved?

Emily Frost and Kirsty Hopgood join her from their childhood bedrooms to discuss the anxieties around treatment and how that has changed their appearance, the surprising messages they’ve received and whether to upload pictures to dating apps with or without hair.

Neil MacVictor was diagnosed with a brain tumour at 25 and, after experiencing low confidence as a result, started taking dating classes with Shine Cancer Support. He found them so useful he now teaches the workshops himself.

Quadruple Amputee’s Shock At Three-Month Disability Payment Wait

August 7, 2020

A woman who had a quadruple amputation has said “it makes no sense” she will have to wait three months before being paid disability allowance.

Caroline Coster, 58, caught coronavirus in March but had her hands and feet amputated after getting sepsis.

She questioned whether the wait to get her Personal Independence Payment (PIP) was “just in case they grow back”.

A government spokesman said PIP claims could be made as soon as someone’s “needs arise or change”.

After recovering from Covid-19, Mrs Coster, from Bedford, developed sepsis, an extreme reaction to infection that causes vital organs to shut down.

She almost died twice while in a medically induced coma at Bedford Hospital.

The mother-of-two recovered but her hands and feet had been deprived of blood and had to be amputated.

Mrs Coster has since been undergoing rehabilitation while applying for PIP, a benefit to help people with long-term disabilities meet extra costs.

She became concerned when she read on the Department of Works & Pensions (DWP) website that to “get PIP” people must have “a health condition or disability where you have had difficulties with daily living or getting around (or both) for three months”.

“It makes no sense to me at all,” she said. “It is pretty obvious I’m going to need some help.”

Mrs Coster said she was worried the delay would mean she could not process applications for adjustments to her home.

She said she feared being “tied to a manual wheelchair” while waiting for essential modifications such as a stairlift and a ramp to allow her to go in and out of the house.

“Until we have a ramp, I can’t even take the dog out for a walk,” she said.

Work on the bathroom will also be needed for Mrs Coster to carry out basic tasks such as showering, using the toilet and having a wash.

“My husband would have to be my carer,” she said. “I don’t want that. I want to be independent.”

Mrs Coster said she also had “a recurring nightmare they will say I am fit to work”.

The DWP said: “Anyone can make a claim to PIP as soon as their needs arise or change, with successful claims being back paid.”

It said while people could claim immediately, claimants would need to meet the three-month minimum period before being eligible to be paid.

 

London’s pop-Up Cycle Lanes ‘Stopping Disabled Travel’

August 7, 2020

New cycle lanes are making it difficult for wheelchair users to hail taxis in London, according to campaigners.

Pop-up cycle lanes have been introduced across London as part of a £5bn package to encourage greener modes of transport, but the lanes mean taxis are often unable to pull up to the pavement.

Disability equality consultant Mik Scarlet told the BBC he was happy for cycling to be encouraged but he wanted travel to be made more accessible in the capital.

Coronavirus: University Life May ‘Pose Further Risk’ To Young Shielders

August 6, 2020
A lack of clarity from universities about how they will protect students who had to shield during lockdown “will pose further risk” to lives, the National Union of Students has warned.
It said a shortage of information about safe study, accommodation and support was “concerning” so close to term.
The government says universities should convey any plans “clearly” to students.
But some students fear they may have to shield in bedrooms and have called for more detail on safety measures.
Beth, who asked us not to use her surname, has been shielding due to Crohn’s Disease and a hormone deficiency and says she is concerned about the safety of accommodation and the possibility of a second wave.
“What if I get back to university and then four weeks in I’m asked to shield again and I can no longer access my kitchen or leave my room? My little box room will be all I have to ensure that I’m safe.”

‘Further risk to lives’

It is a fear echoed by many students among the 2.2 million people asked to shield by the UK government at the start of lockdown, which ended on 1 August.
But with just weeks before term begins, vulnerable students have said there has been little communication about what they can expect, in part, because universities themselves are grappling with an unprecedented situation.
The University of Surrey said it plans to “contact all new students” to see what support it can offer, and will try to meet specific accommodation requirements. But it said it doesn’t actually have any plans in place yet.
The NUS said a “lack of clarity” from many universities about coronavirus measures was “concerning”.
Sara Khan, who looks after student equality for the NUS, said: “Clear support pathways must be outlined for students moving into accommodation safely and accessing mental health services physically or remotely.
“A failure to put these plans into action will pose further risk to the lives of students, particularly shielding students.”
The lack of specific information is something that worries Jennifer who has been shielding for five months due to having the blood disorder Thalysemia, which can lead to complications in the body’s organs.
She is about to start a master’s degree in terrorism and politics at the University of St Andrews.
Rather than risk living in university accommodation she has decided to pay more for private housing, which she says gives her “security and certainty”.
“I’m hoping that the student body will receive regular Covid-19 tests so that people can go safely and without worry to university.”
She said her university life was already impacted by coronavirus before the summer break.
“I worked twice as hard as I used too, because I couldn’t see my lecturers. I think what impacted me most was also not being able to see my friends. I love their presence, their ideas and thoughts.”
Like Jennifer, Emma, a student at the University of Sussex, wants tangible safety measures put in place. She shielded following a kidney transplant.
“I am hoping the university as a whole will enforce mask-wearing as I know this is something that will make myself and others feel safer. I am sure the university has put lots of things in place, but it would be nice to know exactly what’s going on.”
The University of Sussex said its student support team would work with students who have long-term health conditions and those “anxious about returning to campus” to find “reasonable adjustments” for them.
But for those students who are on work placements as part of their degree, the worry around safety is just as acute.
Laura has Behçet’s disease, which causes inflammation of the blood vessels and tissues.
As a final year student of paramedic sciences at the University of Surrey her hospital placement was cancelled at the start of lockdown to protect her health, but she is worried this will impact the completion of her degree.
“I am having to choose between my health and my career which is an awful decision to have to make. It feels almost impossible to plan going forward.”
With just a few weeks to go before students leave the safety of their family homes there still remains a lot of uncertainty.
The Department for Education said universities are “autonomous institutions and we expect them to make judgements based on the latest public health guidance and communicate these clearly to students.”
It said this includes carrying out risk assessments and it had “already seen a host of innovative measures being adopted, such as limiting travel times and student number rotas,” although it did not say where these had been implemented.
While students anxiously await information that will ensure their safety, what has become clear is that post-lockdown learning is about far more than fine-tuning online lectures, it has also become a key lesson in health management.

Parents, Carers And Disabled People In UK Twice As Likely To Lose Job’

August 6, 2020

Parents, carers, disabled people and those who previously shielded are at least twice as likely to face redundancy as the rest of the working population, according to research.

The report, An Unequal Crisis, found that one in four disabled people who are in work are currently facing redundancy. This rose to 37% of those who said their disability has a large impact on their day-to-day life.

The research of 6,000 workers by Citizens Advice also found that half of those shielding because of extreme vulnerability to the coronavirus are currently at risk of redundancy. Two in five parents or carers also face losing their job.

“Although the new research shows the risk of redundancy is widespread, with one in six (17%) of the working age population facing redundancy, it indicated that those in more vulnerable circumstances are likely to bear the brunt,” said Dame Gillian Guy, chief executive of Citizens Advice.

Demand for advice from Citizens Advice on redundancy selection has increased almost seven-fold since February. The charity’s frontline advisers are currently dealing with a redundancy issue every two minutes.

“Employers face difficult choices but there are worrying signs that disabled workers, people who shielded, parents and carers are being pushed to the front of the queue when it comes to redundancy,” said Guy.

“As tough as these times are, they cannot be used as an excuse to break the rules,” she added. “If someone is facing an unfair redundancy, the odds of getting redress under the current system are stacked against them. Workers need a watchdog that will be a one-stop shop to protect their employment rights.”

The charity also warned that it was seeing troubling signs that workers’ rights were being ignored during the redundancy process. “A large wave of redundancies is coming,” said Guy. “But while workers have the right to a fair redundancy process, we are seeing troubling evidence that this is being ignored.”

The charity, which says the findings could be the “tip of an iceberg”, is retraining advisors on workers’ rights in preparation for a wave of redundancies. Last week the National Institute of Economic and Social Research warned that closing the government furlough scheme could push unemployment to 10% this year.

Prior to the pandemic, retail worker Natalie had always been given shifts around her childcare. She was told she would be made redundant after returning from furlough because she wasn’t able to work more flexible hours.

She told her employer this was unfair and was then asked to take a test along with other employees, after which she was made redundant.

She said: “I’ve been so worried that I could lose my house as I don’t know how long it will be until I find another job. I’ve always worked and never been unemployed. This is quite a scary scenario. The thought of losing my home scares me. It would destroy me.”

Jamie McGlynn, contact centre anager at Citizens Advice Manchester, said: “People are absolutely wracked with worry. One lady with underlying health conditions told her employer she felt unsafe about returning to work as another worker had Covid symptoms but wasn’t isolating. The next week she had her redundancy notice through.”

The Department for Work and Pensions has been contacted for comment.

Parents Of Disabled Children Concerned Over Face Masks

August 6, 2020

A mum who runs an autism support group is appealing for more understanding for young people who cannot wear face masks.

Danielle Smith says parents have been publicly criticised because their disabled children did not have the coverings.

She says families who have been denied access to shops and public transport have inundated her with messages.

Autism In Children: ‘Many Families Face Council Discrimination’

August 5, 2020

More than a quarter of English councils are acting unlawfully by discriminating against children with autism, according to a report by disability law experts.

Forty-one out of 149 local authorities have policies that denied families social care assessments, the Disability Law Service said.

Acting Lib Dem leader Sir Ed Davey, a patron of the service, said some cases were “discriminatory and unacceptable”.

The Local Government Association said councils were “doing all they can”.

Judith Blake, chair of the LGA’s children and young people board, said: “Councils are under huge strain as a result of the rising demand for support – seeing an increase of 10% in education, health and care plans in the last 12 months alone.”

Children with autism have the right to be treated the same as other disabled children under the Equality Act.

Local councils are legally required to assess disabled children to deliver the social care support they and their families would need – such as respite care and clubs.

The report found councils were blocking assessments and would only allow them if the child had an additional disability, showed a level of challenging behaviour or had been given an official diagnosis of autism.

Desperate for a break

Natalie Fawcett, from Scarborough, said she was desperate for a break from caring for her 14-year-old son Jordan, who has been diagnosed with autism, a moderate learning disability and severe anxiety.

“It’s a constant battle to get the help and support,” she said.

“We’re absolutely not coping at all. Jordan doesn’t sleep well and some nights I don’t go to bed. Very recently I’ve been up for 50 hours.”

Ms Fawcett said she had requested help over the past six years for Jordan to attend a suitable out-of-school club.

“I don’t feel the support offered by the council is adequate or appropriate, I don’t feel it’s meeting my needs and it certainly isn’t meeting Jordan’s.”

The report has not named the 41 councils, but the BBC knows the county council in North Yorkshire, where the Fawcett family lives, was one of them.

The council said its policies were neither unlawful nor discriminatory. Stuart Carlton, corporate director of children and young people’s services, said: “We ensure families whose children have been diagnosed with autism receive a social care assessment if requested by the family, or another professional with the family’s consent.

“These assessments identify any additional support we can provide, including respite.

“For those children who don’t have a formal autism diagnosis and don’t meet the criteria for the Disabled Children Service, we do all we can to support them in schools and other education settings”.

Sir Ed Davey said the way some families of autistic children were being treated was “unlawful, discriminatory and unacceptable”.

“These children have only one crack at childhood and if the law and the local authorities don’t support them then those precious moments will be wasted,” he said.

“It’s vital those in charge of social care in every local authority step up to the plate, review their policies and make sure children are getting the social care needs assessments and support the law says they should.”

The Liberal Democrat MP has written an open letter to councils highlighting “systemic and widespread discrimination against autistic children” and, without naming the councils, has urged them to put things right.

The government said it was increasing high-needs funding for local authorities by £780m this year and a further £730m in 2021-22, boosting the total budget for supporting those with the most complex needs to more than £8bn that year.

Parents ‘humiliated’

Prof Luke Clements from the University of Leeds’ school of law, who led the research, concluded parents were being “let down and damaged”.

His team analysed Freedom of Information responses and searched the council websites for their policies.

He warned some parents were being “humiliated by their local authority” and “treated very badly”.

“I’ve been a lawyer for 40 years and I couldn’t find some of these policies,” he said.

“What a family with a disabled child with a myriad of other problems could possibly do I just don’t know – they would have to give up.”

The National Autistic Society said: “Families of autistic children up and down the country are being failed by the councils that are supposed to help them.”

Head of policy and public affairs Tim Nicholls said the report was “damning evidence that far too many families have to fight too hard and wait far too long for the support their children need.”

“What we hear too often is the families bumping along from crisis to crisis and, in the worst cases, children end up needing intensive support, end up in care or in mental health hospitals and that’s exactly what we need to avoid.”

How the BBC researched the story

The BBC launched its investigation in 2019 after families of autistic children and charities supporting them, namely the Disability Law Service and Cerebra, said there were serious problems in accessing assessments.

The Disability Law Service carried out some of its own research in 2017, which found some councils’ policies to be unlawful. The BBC decided to contact every English council to find out if the discrimination was widespread.

Between April and September 2019 the BBC submitted Freedom of Information requests to all local authorities in England, requesting their policies for dealing with assessments of disabled children.

The University of Leeds joined the investigation towards the end of 2019 and provided a team of legal experts to analyse the policies and responses from the Freedom of Information requests.

They concluded 41 of the 149 English councils were breaking the law and discriminating against children with autism under the Equality Act 2010, meaning children with autism were not being given social care assessments and support for them and their families.

The joint report was due to be published earlier this year but was delayed because of coronavirus.

India Coronavirus: Helping Deaf People Get Crucial Covid Information

August 5, 2020

India has a large community of deaf people, but very little digital content exists in sign-language.

The problem has become worse during the coronavirus pandemic as the community doesn’t have instant access to crucial information and announcements.

As a result, it misses out on important news, such as televised addresses by Prime Minister Narendra Modi or press conferences announcing emergency economic measures.

But that is changing now. A group of volunteers have come together to translate important coronavirus information for the community.

Will Young’s Twin Brother Rupert Dies Aged 41

August 4, 2020

Rupert Young, the twin brother of UK singer and Pop Idol winner Will, has died at the age of 41.

A spokesperson for the singer confirmed the death and requested privacy for the star and his family “during this very difficult and sad time”.

The singer had spoken in the past about his sibling’s mental health issues and battles with alcohol.

“It’s very tough having a family member who is an addict,” he told the Daily Record in 2008.

Rupert Young, who set up a mental health charity called The Mood Foundation in the late 2000s, also spoke openly about his struggles with depression.

In 2008 he talked about seeing his brother perform on morning television when he had himself spent the previous night drinking and self-harming.

“It seemed bizarre to me that two people who are genetically the same could behave in such different ways,” he said.

In 2015 Will Young spoke about having post-traumatic stress disorder (PTSD), which he attributed partly to being separated from his twin at birth.

The singer was crowned the first Pop Idol in 2001 and has since released seven albums, written two books and has acted on film and stage.

When he set up The Mood Foundation, Rupert Young said he had been “badly affected by depressive conditions” and had “suffered from addiction, self-harm and major depression”.

“It took years for me to first realise there was something wrong and then to find the right treatment,” he wrote.

According to information from the Charity Commission, the organisation operated from 2008 to 2010.

Tokyo Paralympics: 2021 Games May Require Specific Coronavirus Measures

August 4, 2020

Organisers of the Tokyo Paralympics say the Games may require specific Covid-19 measures to keep athletes safe.

It was confirmed on Monday that the schedule for next year’s rearranged Games would remain largely the same.

The opening ceremony will take place on 24 August 2021 with 539 events across 22 sports.

“There might be some specific measures that are needed, depending on what type of sport or competition it is,” said Games director Hidemasa Nakamura.

“We are having discussions with the International Paralympic Committee, international federations and others to provide a safe and secure environment.

“It’s true that the coronavirus situation is not clear, but this is a big step in our preparation.”

The Games were due to start on 25 August 2020, but the coronavirus pandemic forced a 12-month delay.

The first Paralympic medal of the 2021 event will be now be awarded on 25 August in the women’s C1-3 3000m individual pursuit race in track cycling while Britain’s Sarah Storey could add to her 14 Paralympic golds on the same day in the C5 3000m pursuit.

Medals will also be decided on day one of competition in swimming and wheelchair fencing.

Sunday, 29 August has been dubbed ‘Golden Sunday’ with 63 gold medals up for grabs, including in wheelchair rugby where the hosts Japan are tipped for glory.

Dame Barbara Windsor Moves To Care Home As Alzheimer’s Worsens

August 4, 2020

Dame Barbara Windsor has moved to a care home in London due to her advancing dementia.

Her husband Scott Mitchell told The Sun the former EastEnders star has been there since mid-July.

He said: “I feel I’m on an emotional rollercoaster. I walk around, trying to keep busy, then burst in to tears. It feels like a bereavement.”

Dame Barbara, 82, was diagnosed with Alzheimer’s in 2014 and her condition has worsened during lockdown.

Scott added: “It’s always been my biggest fear, that one day I would have to take her somewhere and she’d be thinking, ‘Why would he do this to me?’

“That fear has become a reality. It’s something I never wanted.”

Speaking about the day he left Dame Barbara at the home, Mitchell said: “I’ll never forget the feeling of emptiness. I felt sick in the pit of my stomach that I’d left her. I still feel like that.

“By the time I got home and went to bed, I just felt desperately sad. It’s been 27 years since we met and we spent so much of that time in each other’s company. It feels like another chapter has gone.”

The couple have been married for 20 years.

Scott said he had tried to make her room look homely with family and showbiz pictures, including one of the actress receiving her damehood from the Queen.

The veteran of film and TV was made an MBE in 2000 and a dame in 2015 for services to drama.

Dame Barbara appeared in nine Carry On films and played the pub landlord Peggy Mitchell in EastEnders.

The actress first appeared on stage at the age of 13 in a pantomime and was soon performing in the West End musical Love From Judy.

In 1964 she worked on her first Carry On film – Carry on Spying.

She was also in sitcoms including Dad’s Army and One Foot in the Grave.

Both Dame Barbara and her husband have campaigned to raise awareness of dementia, which is most common in people over the age of 65.

Although the former Carry On star was diagnosed in 2014, the couple did not go public with the news until 2018 after her condition worsened.

Last year, Dame Barbara and her husband presented Prime Minister Boris Johnson with a petition, organised in collaboration with Alzheimer’s Society, highlighting concerns over dementia care.

Is dementia the same as Alzheimer’s?

No – dementia is a symptom found in many diseases of the brain.

Memory loss is the most common feature of dementia, particularly the struggle to remember recent events.

Other symptoms can include changes to behaviour, mood and personality, becoming lost in familiar places or being unable to find the right word in a conversation.

It can reach the point where people don’t know they need to eat or drink.

Alzheimer’s disease is by far the most common of the diseases that cause dementia.

Others include vascular dementia, dementia with Lewy bodies, fronto-temporal dementia, Parkinson’s disease dementia, amyotrophic lateral sclerosis and the newly discovered Late.

A Tribute Post For Chris Ledger

August 3, 2020

I was very sad to wake up yesterday to the news of the passing of Chris Ledger- a campaigner mainly for disability arts. We shared many Facebook friends and were Facebook friends for six years.

Her organisation, University of Atypical, posted this wonderful tribute on Facebook yesterday:

It is with great sadness that the Trustees of University of Atypical announce the passing of our beloved CEO, colleague, mentor and friend Chris Ledger.
Our thoughts and prayers are with her wife Louise, her family, and her many friends who will miss her presence in their lives. Chris fought her illness with the same energy she invested in the arts. She was a tireless ambassador for D/deaf and disabled artists and her influence is manifest in the position that D/deaf and disabled arts have achieved in our community.
We will organise a suitable acknowledgement of Chris – her vast contribution to the arts and her legacy that is UofA – and will share these details with you when we can. Her influence is reflected in our messages today going to her colleagues and friends – locally, nationally and internationally.
Chris was an amazon, a wonder woman and the queen of lipstick. We will miss her humour, her energy, her cynicism, her passion and her friendship. All who knew her have been touched by her and she leaves behind many, many friends. We will miss her.
‘Chris’s contributions to the Arts & Disability Forum/University of Atypical resonate far beyond the confines of the physical walls of the organisation. They are visible in the innumerable smiles on faces of artists, their families and the public. During Chris’s stewardship as CEO, D/deaf and disabled arts and culture was mainstreamed to a degree never seen before on these shores or elsewhere. The general public and government here in NI are now aware of the contributions of so many disabled people, thanks to Chris’s tireless championing. Her underlining emphasis on Disability Culture and Rights was and continues to be revolutionary.
I am privileged to call her a friend, colleague and mentor. Her passing is a terrible loss for us all.’
Seán Fitzsimons (Chair, University of Atypical)
Please send us your comments, messages, anecdotes and condolences to pass on to Louise.

500,000 Disabled Young People Face ‘Double Disadvantage’ In Job Hunt

August 3, 2020

A press release:

•  Discrimination and more competition for jobs in the post-COVID-19 world will leave the UK’s 500,000-plus disabled young people struggling to access jobs.
•  A group of disability organisations has written to ministers calling for changes to the Government’s Plan for Jobs.
•  Disabled people face “years of being left behind” if their needs aren’t met, but minor changes could “unlock a generation of potential”.

More than half a million disabled young people will be hit by a double disadvantage as they try to move from education to employment unless urgent action is taken, disability groups have warned.

In a joint letter to Government ministers, a coalition of nine organisations led by the National Deaf Children’s Society has asked for changes to the Government’s Plan for Jobs to avoid a looming employment crisis among disabled young people aged 16-25.

Without the amendments, the group says that the double disadvantage of disability discrimination and a huge increase in competition for jobs caused by COVID-19 will leave disabled young people at a significant risk of long-term unemployment.

The organisations signing the letter include Thomas Pocklington Trust, Disability Rights UK, Genius Within, Leonard Cheshire, the National Development Team for Inclusion, Natspec, the Institute for Employment Studies and the Council for Disabled Children.

Among eight suggested changes, they want to see the Kickstarter Scheme expanded, Careers Advisors trained to work with disabled people and online job searching made more accessible.

They are also calling for the number of Disability Employment Advisors to be doubled and the £1,000 incentive for businesses taking on apprentices to be extended to all disabled young people, rather than just those with Education, Health and Care plans.

There are more than 500,000 disabled young people in the UK and the changes would unlock a generation of potential and give them all the chance to succeed, the organisations say.

Government figures from last year showed a 28.6% gap between the employment rates of disabled and non-disabled people.

Research by the National Deaf Children’s Society’s Youth Advisory Board showed a lack of tailored advice for deaf young people and little support available when entering work.

Steve Haines, Director of Policy and Campaigns at the National Deaf Children’s Society, said:

“The Government’s efforts to get young people into work are very promising, but we’re extremely concerned that those who are disabled will still struggle to access jobs.

“There’s a generation of potential available and the Government has the chance to unlock it, but unless changes are made to the Plan for Jobs, hundreds of thousands of disabled young people will face years of being left behind.

“They already battle discrimination throughout their lives and often find it harder to gain employment, so we cannot risk the gap getting any wider.

“The changes we’re proposing will mean the Government can build on the progress it has already made and give every disabled young person the chance to show what they can do.”

India Atkinson: Using TikTok To Talk About Rare Condition

August 3, 2020

India Atkinson has become a social media sensation for educating people about her disability.

The 20-year-old from Belfast has Symbrachydactyly, a rare condition meaning she was born without fingers on her left hand.

She says there is often a stigma attached to having a disability and she wants to make others feel comfortable by showing it off.

She started making TikTok videos to address common misconceptions about her disability using humour.

Growing up, India often heard the word “weird” being used to describe her hand. Had there been someone with a disability she could have looked up to on social media, she says, it would have given her more confidence.

Shielding Ended On August 1st

August 3, 2020

How do you feel about shielding being paused? Did you go out this weekend? What was the first thing you did?

 

More than two million people shielding against coronavirus in most of England, Scotland and Northern Ireland can now leave their home and return to work.

Vulnerable people were advised in March to stay at home, or shield, to avoid contracting Covid-19. In Wales the advice stays in place until 16 August.

But Macmillan Cancer Support said people in the shielded group do not feel safe enough to leave their homes.

It comes after the PM applied the brakes to easing restrictions further.

Meanwhile, Graham Medley, a member of the Scientific Advisory Group for Emergencies (Sage), which advises the government, has said England could have to consider closing pubs in order to reopen schools in September.

And businesses that have furloughed staff during the coronavirus pandemic must now start contributing to the government’s job retention scheme.

Those who have been shielding since March include people in high-risk categories, such as those who have had an organ transplant, are receiving immunosuppressant drugs, undergoing chemotherapy and radiotherapy, or have severe respiratory conditions.

Now, they can return to work if they cannot work from home and as long as their workplace is Covid-secure. It is still advised they maintain social distancing when outside.

From Saturday, those who were shielding in England, Scotland and Northern Ireland will no longer receive food boxes and medicine deliveries from the government.

But shielding advice remains in place for Blackburn with Darwen in the north-west of England, Leicester and Luton, and the most vulnerable will continue to shield in Wales for another two weeks.

Eve Byrne from Macmillan Cancer Support said the organisation had written to the government over concerns shielders are having to “make the impossible choice” between their health and their job.

“People in the shielded group are telling us that they are just not feeling safe,” she told the BBC, adding that the government needs to ensure the necessary protections are in place for people returning to work.

‘I’m excited to see my mum’

Michelle Teale, from Leicester, saw her mum on Saturday for the first time in 22 weeks. Michelle has been shielding because she has secondary breast cancer.

“I can’t get into words just how excited I feel today and how tough it’s been, not being able to physically see her,” she said.

She took a bottle of champagne for them both to enjoy as well as some flowers for her mum.

“It feels strange, like going on holiday for the day. I feel excited but I’m also nervous”.

However, other people who have been shielding say they will continue to do so.

Norah Grant, who has chronic lymphocytic leukaemia and leads a support group for people under 60 with the condition, says the decision to end shielding was “very odd just considering everything that is happening in Manchester and all around”.

“I don’t think I will be changing my habits,” she told BBC Radio 4’s Today programme, adding that she will be able to work from home in one of her two jobs.

“A lot of people in our [support] group are very nervous about going back to work,” she said.

Sara Swanson, who has an immune deficiency which means she cannot produce antibodies, said she would also continue to shield. “I really don’t think it is safe,” she said. “There are a lot of people not following the rules.”

On Friday, Prime Minister Boris Johnson announced that the further easing of lockdown restrictions in England – due to come in this weekend – would be postponed for at least a fortnight.

It means that the following will not be able to take place until 15 August, at the earliest:

Labour’s shadow health secretary, Jonathan Ashworth, said he supported the government’s decisions on shielding and the lockdown restrictions.

But he told BBC Breakfast the “way in which the [lockdown] announcement was communicated” on Thursday night, “sort of dribbling out” without all the detail, “has caused a degree of confusion and anxiety”.

The rethink on easing England’s lockdown follows new restrictions for people in areas including Greater Manchester, east Lancashire, and parts of West Yorkshire after a spike in virus cases. The rules include a ban on separate households meeting each other inside their homes and private gardens.

 

Rishi Sunak’s Planned Online Sales Tax Is A Tax On Disability

July 31, 2020

The Tories have adopted a “your country needs you” approach to Britain’s pandemic. It is our civic duty to get back to normal – to go shopping, eat out, use public transport and go out to work. Now the chancellor, Rishi Sunak, is floating the idea of an online sales tax in England to nudge the public to get out to the high street. The British Retail Consortium says consumers will inevitably face higher prices online if such a tax is launched.

Against a backdrop of mass retail job losses and store closures triggered by coronavirus, the high street is in desperate need of support, but this is not the way to do it. Large chunks of the population moved to online deliveries during lockdown but there are many who have no choice but to rely on them. Millions of people who are at high risk from coronavirus owing to underlying health problems need online shopping to stay safe in the coming months. In addition, there are people with health conditions who are physically unable to get out of the house, and others who can’t use the high street because it’s not accessible: almost a quarter of all fashion retailers have no step-free access for wheelchair users, while only 10% have a hearing loop available for shoppers with hearing aids. An online sales tax is essentially a tax on disability.

This is all the more unfair considering that this is a group largely already below the breadline. Disabled people have long been more likely to be in poverty – as well as unemployed or on low wages – and this has only been exacerbated by the pandemic, which has left many struggling to afford the basics while being isolated at home.

“I already pay more for my goods,” one disabled person told me. “I pay postage or delivery charges on top of what I spend. Often I have to spend over a certain amount even to obtain an online supermarket delivery slot (usually £25-35). I simply cannot afford an additional fee.” “I’m housebound. I rely on online shopping for food, supplements and medication,” another said. “My husband and I live on his minimum wage, and Sunak wants to punish us just that little bit more.”

This isn’t the first time the government has pitched an economic recovery package that discriminates against disabled consumers. We saw it with the “eat out to help out” scheme last month, which gave a £10 coupon to diners in a bid to help ailing restaurants. As a shielder, I would love to support local pubs and cafes that are doing deliveries of meals, but this wasn’t included in the policy. (I’ve tried to do this anyway but many can’t afford to without the discount.)

Effectively, disabled people are being financially penalised for having bad health, as if this is somehow a choice we are making that we should be taxed for. It is more proof, as if it were needed, that the politicians proposing these policies have never lived with disability or struggled to pay the week’s shopping bill.

The government’s habit of blaming individuals for structural problems has been growing during the coronavirus crisis. Look at the recent obesity initiative, whose underlying message is that it is lazy, fat people – rather than years of underfunding – who are putting a strain on the NHS. Or the health minister who this week blamed the high death rate of people in poverty from coronavirus on the decisions they make. And here with the high street, the issue apparently isn’t longstanding changes in consumer habits or the risk of “vulnerable people” becoming ill, but stubborn families refusing to go out.

There has been good news for shops this week – new CBI figures show UK retailers enjoyed their best sales in more than a year after many stores reopened in June – but ignoring the real fears of the public and pushing the burden on to those who can least afford it must not be the next step. Economic recovery in a pandemic has to be balanced with public safety, just as the needs of cash-strapped families have to be acknowledged alongside struggling businesses. Our high streets need support – but not at the expense of some of the poorest and most ill people in the country.

Welsh Mother Barbara MacArthur, 93, Talks About Being A Carer After Her Guardian Letter Goes Viral

July 30, 2020

For more than half a century, Barbara MacArthur, one of the first female police officers in south Wales, has worked countless, long, unpaid hours as a carer.

In the 1960s she began looking after her ailing parents in her small terraced house in Cardiff and now, aged 93 and frail herself, she continues to care for her 66-year-old disabled son, Howard. The pair live on the cramped ground floor of the house because neither can make it up the stairs.

MacArthur has always approached her caring duties with stoicism and good humour – until this week. The coronavirus crisis prompted her to write a heartbreaking letter to the Guardian in which she spelled out her fight for survival, argued that the care system was broken and said she wished she had the time to feel lonely.

Speaking on the doorstep of her home on Thursday, with Howard occasionally putting his arms around her, MacArthur told of her surprise that her cry for help had gone viral on social media. “It’s just our story,” she said. “I didn’t expect it to get such a response.

“We feel a little forgotten about sometimes. Most of our relatives and friends have died or moved away. I used to be able to struggle out to the shops on my walker but can’t even do that now. We’ve been pretty much stuck here on our own throughout the coronavirus.”

The last time MacArthur made headlines was when she helped bring to justice two burglars who had been posing as window cleaners. She recognised the pair from an appeal in a local paper and called the police. Once a police officer, always a police officer.

But in her letter to the Guardian, MacArthur launched a withering attack on the care system. “Our broken care system has been decimated by coronavirus,” she said.

As well as being a police officer, MacArthur spent time working as a hotel housekeeper and a court clerk. She raised Howard by herself after her husband left.

In the 1960s and 70s she looked after her parents, Ruth and Thomas, who died aged 90 and 93. “They couldn’t bear to be in a council home so I took them in. It was hard work, unpaid work.”

Today MacArthur is partially sighted, hard of hearing, has arthritis (the rare form ankylosing spondylitis) with partial paralysis in her left hand and a heart murmur. She has had a heart attack and two mild strokes.

Howard has learning difficulties and physical disabilities and in 2018 he had sepsis. At the time he was still sleeping on the first floor and MacArthur had to crawl upstairs to tend to him while she waited for the paramedics.

MacArthur believes cutbacks before coronavirus made it more difficult for them to get help. “I love Howard very much but it’s very hard. I sometimes wish there was a bit more help,” she says.

Another problem is the street in Cathays where they live. “It’s become a transient area here. It’s very popular area for students and most of the houses are empty at the moment. There are not that many local people around here to help.”

While the Guardian spoke to the MacArthurs, a friend, Jason Morrow, did arrive to deliver milk and the papers. “I do what I can to help – they’re lovely people,” he said. And at lunchtime, Cardiff council’s meals on wheels service arrived with hot lunches.

At the start of the pandemic mother and son struggled to get supermarket deliveries. The MacArthurs’ local Senedd member stepped in. Jenny Rathbone said she admired MacArthur hugely – “She’s an extraordinary woman ”– but disagreed with her on some points. “I don’t think our current system is broken though it is under strain and needs more money.”

Rathbone said she was sure that, if MacArthur gave her permission, social services would assess the pair and potentially provide more support.

They have been receiving council food parcels during the crisis and Howard has a social worker, who was in touch hours after MacArthur’s letter was published.

MacArthur signed off the letter with the puzzled: “Why my son and I have not been added to the ‘vulnerable’ list is beyond my comprehension.” She is not clear if she or Howard are on the Welsh government’s shielded list but she accepts that she has turned down offers of help from the council, which carries out regular assessments of their needs. “It’s partly because I’m stubborn. I don’t like to ask for anything.”

Now she and Howard live day to day and worry about how a second wave may affect their lives. Howard does his best to help. “I used to be the carer,” said his mother, “now I’m not sure which of us is the carer and which is the one being cared for.”

Panorama: The Forgotten Frontline

July 30, 2020

Tonight, BBC One, 9pm:

Panorama follows the unfolding tragedy in care homes as they struggle to protect residents against the killer virus. Over several months, cameras were allowed into two very different care homes, revealing the dedication of care staff, the frustration of managers and the heartache as more and more lives were lost.

Across the country, more than 20,000 residents and care workers have died with Covid-19. Reporter Alison Holt asks if care homes were abandoned to fight the virus alone.

Teenager’s Posts Show Stoma Bag ‘Not End Of The World’

July 30, 2020

A 16-year-old started posting on social media about life with a stoma bag to show “it’s not the end of the world”.

Oliver Kaye, from Watford, was diagnosed with ulcerative colitis in January and had his colon removed last month.

“There are not many people my age who speak out about this and a lot of people judge others,” he said.

“So if someone is going through this I wanted to give them the confidence that it’s not the end of the world.”

A stoma is an opening on the abdomen which connects to the digestive or urinary system and allows waste to be diverted out of the body and into a bag.

Oliver was initially given medication to treat the inflammatory bowel disease but after he fell more seriously ill, he underwent surgery at St Mark’s Hospital in London five weeks ago.

“There is quite a lot of stigma around stoma bags so I want to reassure others going through it,” he said.

Oliver said when he found out he would have to undergo surgery, he “was pretty scared as it was the last resort”.

But when he looked online for other people who had been through a similar procedure, he “was reassured they were doing well and living life”.

That inspired to him to post about his own experiences.

Oliver posts on Instagram and Facebook as “thekidwithabag” and has gained about 2,000 followers in under a month, with a video explaining his condition viewed more than 6,000 times.

He said the reaction to his posts was “amazing”.

“So many people have been giving me messages of support and hopefully it’ll inspire more people,” he said.

“Whatever happens in life, just face it.”

Oliver’s mum Tracy said: “It’s horrible to see your son so poorly.”

She said because of the pandemic the surgery had been delayed and the family “had to fight for everything” so Oliver could go into hospital.

However, she said since then it had made a big difference to his life.

“Now he’s coming out with us. He walked for 15 minutes to a cafe for lunch. He would have never have done that six weeks ago.”

Sophie Bassil, from charity Crohn’s & Colitis UK, said: “We fully support Oliver and everything he is doing to raise awareness of Crohn’s disease, colitis and stomas.

“Having a stoma is a big change but inspirational people like Oliver show every day that there are many positives to be found.

“It takes guts to talk about stomas and we’re proud of every one of our supporters who share their stories.”

George Bates: GB Wheelchair Basketball Player Says He May Consider Amputation Option

July 30, 2020

Great Britain wheelchair basketball player George Bates says he may have to consider having his leg amputated to continue his international career.

The 26-year-old has been told that his particular disability makes him ineligible to play the sport.

Bates was injured playing football aged 11 and has complex regional pain syndrome – a condition that causes persistent severe pain.

“I have been deemed to be the ‘wrong kind’ of disabled,” he said.

Bates made his senior debut in 2017 after a successful junior career and has gone on to win European and world gold with the GB team.

Wheelchair basketball’s governing body, the IWBF, was told earlier this year by the International Paralympic Committee (IPC) that it needed to change its classification regulations in order to comply with the IPC’s classification code.

The IPC warned that failure by the IWBF to act could result in the sport being removed from future Paralympics, including next year’s rescheduled Tokyo Games.

International players are classified between 1.0 (most impaired) and 4.5 (least impaired), and the IPC required all 4.0 and 4.5 players to go through reclassification before Tokyo.

Leicester player Bates was originally classified as a 4.5 player.

“This condition has left me in constant pain for the past 15 years, as well as with reduced limb movement and muscle deterioration,” he posted on social media.

“I will live with this for the rest of my life.”

Bates said he chose not to have an amputation as a teenager, hoping for an improvement in his condition, but that has never happened.

Athletes who have a lower limb amputation are among those eligible to compete.

“Due to the decision of the IPC, I may now be forced to revisit this heart-breaking option,” he said. “It will be a big thing for me to consider.”

The Briton said he was considering appealing against the decision.

“It is ironic that the IPC – which attempts to base its brand around equality and inclusivity – is deliberately discriminating against athletes who don’t meet its narrow-minded view of what it actually means to be disabled,” he added.

In response, the IPC said in a statement that it had sympathy with Bates’ situation but added its classification code states that complex regional pain syndrome is a health condition that does not lead to an eligible impairment to participate in Paralympic sport.

“All Paralympic sport is governed by the code, which was approved by the IPC’s 200-plus member organisations in 2015,” it said.

“Since its approval we have been working with all international federations to ensure they fully implement and abide by the rules of the code.

“This includes only allowing athletes from 10 different impairment groups to be eligible to compete in the Paralympic Games and international competitions. These 10 impairment groups were decided by the IPC membership in the lead-up to the approval of the code.

“The decision to find George non-eligible was taken by the IWBF, which was asked to reassess all 4.0 and 4.5 players by the IPC ahead of Tokyo 2020 to ensure it was aligned and compliant with the code.”

Last month, Canada’s two-time Paralympic gold medallist David Eng was told that his impairment meant he was ineligible to compete in the future.

Liverpool Will Not Host 2022 Special Olympics

July 29, 2020

Liverpool City Council has announced the city will not be able to stage the Special Olympics in 2022.

The event was originally due to take place from 4-7 August 2021 but was postponed in May due to Covid-19.

Continuing concerns over the pandemic, a congested schedule including the 2022 World Gymnastics and uncertainties over finances led to the latest decision.

The Special Games, first held in 1968, would have seen over 2,000 athletes with learning disabilities compete.

Mayor of Liverpool Joe Anderson said: “I am both personally and professionally devastated that Liverpool will not be able to host the rearranged 2021 Special Olympics National Summer Games.

“Liverpool produced an ambitious and innovative bid for the 2021 Games that promised athletes would have the time of their lives and we were wholeheartedly committed to doing just that.

“None of us could have foreseen a global pandemic that has derailed the plans on such an unprecedented scale and while our values have not deviated, it is inevitable that plans have had to be reassessed.”

Paul Richardson, chairman of Special Olympics GB’s board of trustees, said: “Covid-19 has had, and continues to have, a huge impact both mentally and physically on our athletes, and this decision will be felt deeply.

“The work now begins on our next steps and what realistically can be achieved under these unprecedented and challenging times. We would like to thank everyone involved for their hard work and dedication as part of this journey and we very much hope our paths will cross again in the future.”

Ed Sheeran On Bulimia And Addictive Personality

July 29, 2020

Ed Sheeran has revealed how his “very addictive personality” led him to binge on food and alcohol during the early days of his success.

Speaking at an online summit on anxiety and wellbeing, the star said he had suffered panic attacks and hated the way he looked after becoming famous.

He hit a particularly rough patch during his 2014-15 world tour.

“I felt, ‘What was the point?’ In a dark way, like, ‘Why am I around? What is the point?'” he said.

The star credited his wife, Cherry, and a more healthy lifestyle for helping him turn his life around.

“She exercises a lot, so I started going on runs with her. She eats quite healthily so I started eating quite healthily. She doesn’t drink that much so I wasn’t drinking,” he said. “I think that all changed things.”

In a wide-ranging interview with documentary maker James Sebastiano, Jr, Sheeran also explained his current hiatus from music, and why he has taken up painting.

How touring affected his health

Sheeran said the 180-date world tour to promote his 2014 album X, was his lowest point.

“I would stay up and drink all night and then sleep on the bus,” he said. “The buses would park underneath the arenas and I’d sleep on the bus all day, then wake up and then come out, do the show, drink, get back on the bus and I didn’t see sunlight for maybe four months.

“It’s all fun and games at the start. it’s all rock and roll, and then like it starts getting sad. That was probably like the lowest that I’ve been and I kind of ballooned in weight.”

On his addictive personality

“I’m covered in tattoos and I don’t do things by half,” the star admitted, “so if I’m gonna drink… I see no point in having a glass of wine. I’d rather have two bottles”.

“Having a glass of wine is having something in moderation and probably isn’t going to affect your day the next day. But two bottles of wine probably might make you quite sad.”

But alcohol wasn’t the only problem.

“They used to call me two-dinner Teddy because I used to order two meals and eat that,” he said. “Then you start putting on loads of weight and hating the way you look.

“I think things like sugar, sweet stuff, junk food, cocaine, alcohol, it feels good the more you do, but it’s the worst thing for you.”

How Elton John delivered a few home truths

Sheeran was signed to Elton John’s management company at the start of his career – and he said that reading his mentor’s autobiography had prompted a few realisations about his own lifestyle.

“There are so many things that he did that I do,” the star explained.

“He would be like, ‘I would just go on an ice cream binge and eat four desserts until I threw up’, and I was like, ‘I’ve done that before’.

“Or his martini binges, where he sees how many martinis he can drink. And I’m like, ‘I’ve done that before too’.

“With addiction, its very hard to moderate but moderation is the key.”

Taking a break from music

Sheeran had a number one album last year, with his No. 6 Collaborations Project, but he indicated he’d be stepping back from music for the rest of 2020.

“You can sense when the public are like, ‘We’ve had enough now,'” he said of the album’s reception. “One of the important things in the industry is to know when not only to give yourself a break, but to give the public a break.”

In the meantime, he’s taken up art.

“I was like, ‘I should probably try and find something else to give me happiness,'” he explained. “There’s only so many movies you can watch and packets of Monster Munch you can eat.

“So I basically bought 30 canvases and I painted a canvas a day for 30 days and it was really fun.”

He said his creations were in the style of abstract impressionist Jackson Pollock – “I just bought house paint and then I would just layer it up by flicking it” – but the public would never get to see them.

“I don’t sell my art. I just love doing it. No one else needs to judge.”

On the perils of fame – and how people ‘stole’ his money

One of the star’s more surprising admissions was that he felt very little sense of achievement after his record-breaking run of shows at Wembley Stadium in 2015.

“It sounds weird saying it but you don’t really feel anything,” he said. “You’d think it would be like, ‘A-ha! This is it. I’ve made it. Oh my God!’ [but] you finish it and you’re like… ‘Well, what do I do now?'”

The star says he cherished the early days of his career, playing open mic nights and sleeping on friends’ sofas, more than the big-scale stadium shows and festivals he’s become accustomed to.

“I started at the bottom and I loved every part of it,” he said. “I learned more playing in a room to one person in Exeter when no-one came to my gig in 2009 that I did playing Wembley Stadium for four nights. It’s a weird one.”

He added that fame had come at a cost.

“When you have success and you find money… you get people getting weird with you. I had family members turn weird and friends fall out with me and people stealing. It’s not the key to happiness.

“Fame is an enhancer [of] everyone else’s insecurities,” he added wearily. “The number of people I don’t speak to anymore just because it just turned weird.”

His success has also triggered panic attacks, he said, often when he’s surrounded by large groups of people.

“I would get it on the tube and planes, supermarkets… It’s a weird paranoia in me of assuming that everyone’s going to be horrible, when usually people are nice.”

Why he no longer needs social media

Despite taking a sabbatical from releasing music, Sheeran says he’s working on new music – treating his studio sessions as a “nine to five” job, in an effort to maintain a healthy work-life balance and spend more time with his wife.

He’s also quit social media, as he did in 2016 while working on the follow-up to the multi-million selling X album.

“I was on my phone probably 19 hours of the day in 2015 and before that, just constantly just flicking, posting, flicking and posting. And it wasn’t till the tour ended in 2015 where I was like, ‘Oh I’m just gonna try and live without my phone for a bit’.

“I had 1,500 contacts on my phone and people were texting the whole time and it just felt a lot of responsibility to either reply or meet up with them.

“For the first month I felt like a massive weight had been lifted.”

After returning to social media to promote his third album, Divide, he found himself falling back into bad habits, so he announced he’d be “taking a breather” again on Christmas Eve 2019.

He now says he’s “of an age where I’m beyond” needing to be on social media.

“I don’t think I’m going to get the youth [audience] back – because I’m getting into my 30s,” he explained. “It’s not like 16-year-old people are going to relate to me next time I release an album. So it’s not like I need to be on it any more. I can just have someone post it [for me].”

Pain, Humiliation And Failed Claims Caused By Being Forced Into Wrong PIP Assessment

July 28, 2020

With many thanks to Benefits And Work.

PIP claimants are suffering physical and emotional pain, humiliation and failed claims by being forced to endure the wrong sort of PIP assessment, a survey of over 3,000 Benefits and Work users has shown. The DWP must respond to calls to let claimants choose between telephone and face-to-face assessments, as soon as the latter become available again.

Meanwhile, we are updating our guides to help members challenge the result of inappropriate assessment.

Survey results

Last month, we asked readers which you would prefer if given a choice, a telephone assessment or a face-to-face one.

We deliberately didn’t include an assessment on paper as we consider that the chances of the DWP offering this as a choice for claimants to make, rather than solely an option the DWP can select, are currently extremely slim.

A total of 3069 people completed the survey.

Of these 29% had a physical health condition, 14% a mental health issue and 57% both.

At first, the telephone assessment was a very clear leader, but as more results came in, the numbers began to even up.

The final result was 55% would choose a telephone assessment and 45% face-to-face.

But this can be broken down further.

A majority of claimants with a mental health condition favoured a telephone assessment. The results were: telephone 60%, face-to-face 40%

Conversely, there was a small majority of claimants with a physical health condition in favour of face-to-face. The votes were telephone 48%, face-to-face 52%

For claimants with both a physical health and a mental health condition, the results were a clear majority for telephone assessments. The results were: telephone 57%, face-to-face 43%

But this doesn’t tell the full story, by any means. Because within each group there are claimants who would be strongly disadvantaged by an assessment method that others would prefer, as respondents comments made clear.

Your comments

Almost 1,500 people left a comment as well as voting.

We have included a limited selection below, though it still runs to well over 4,000 words.

Some of the comments are harrowing. The degree of shame and humiliation that many claimants experience, especially during face-to-face assessments, makes difficult reading

What was absolutely clear was that for many respondents, the type of assessment can make a dramatic difference to their chances of giving accurate evidence.

For some people, the physical pain or psychological trauma of attending an assessment centre leaves them too exhausted or distressed to give accurate evidence. They will not give a clear account of their condition and the assessment will be flawed as a result.

For others, the effect of the additional medication they have to take to manage the journey means that they present very differently to how they would on an average day.

For these claimants, a telephone assessment is likely to produce more accurate results.

Some claimants with mental health conditions, however, struggle to deal with telephone calls. They may become terse and uncommunicative, saying whatever it takes to end the call as quickly as possible. But their anxiety and distress will be invisible to the assessor, who will fail to assess them accurately.

Some will simply not answer the phone and are likely to have their claim stopped altogether.

And some claimants have physical health conditions whose effects are much more easy to see than they are to explain over the phone. Again, the wrong sort of assessment will lead to inaccurate scoring.

Offer choice

Individual claimants are best placed to know what sort of assessment will allow them to give detailed and accurate evidence, so offering a choice will lead to better reports and fewer appeals.

And it’s no good simply assuming that all claimants with a particular type of condition will favour the same assessment method.

People with the same condition may have very different requirements.

This was made especially apparent by the large number of claimants on the autism spectrum who left comments. We have reproduced a selection of these at the end of this article because they show how varied the response to assessments is.

A campaign is currently being run by Mind asking people to contact their MP to ask for claimants to be given a choice in how they are assessed. We would recommend joining the campaign.

Clearly, at present face-to-face is not an option. But as time passes, the likelihood of this method being reintroduced grows. When it is, it will probably be done without consultation or warning. So, it is best to take action now.

Updating our guides

Which is why, over the next week, we will be updating our members only guide to Ways To Challenge a PIP Medical Report to include challenges based on the inappropriateness of the type of assessment. We will include sample texts to help you to challenge a report on this basis

We will also be updating the PIP claims guide with sample texts you can include in your PIP2 ‘How your disability affects you’ form, specifying the type of assessment that would be most appropriate for you.

Again, this will become more important if face-to-face assessments are reintroduced without warning, possibly after you return your form but before an assessment has been booked.

The main advantages of a telephone assessment

From amongst the many comments we received, we have tried to identify some themes for why people preferred one form of assessment over another. We have edited the comments only to correct obvious spelling errors, where we felt leaving them in would distract from the content.

Warning: some of the contributions may be distressing for some readers.

There is no long and exhausting journey with possibly a lengthy wait at the assessment centre.
Because just getting there is so stressful and painful, you feel exhausted before you even begin, and that hampers your ability to answer the questions clearly and accurately.

Telephone would be my choice as I have fairly severe mobility issues and find traveling to, and waiting around at assessments challenging, difficult and very painful.

I am in so much pain to travel the distance and to be sat around waiting for ages where I could wet myself if not near to the toilet or the toilet is in use. Also the pain I’m in is terrible and to be somewhere unfamiliar where I’m unable to sit and try to get comfortable

The difficulty for me to even get to a centre to undertake the assessment, is in itself the greatest challenge of all. The action of the agencies the DWP use, to turn the whole process against you for even getting there in the first place and the negation of how difficult it was & the negative impact on your welfare and disregard for it, is utterly criminal.

Avoiding the exhaustion and stress of attending the assessment centre and waiting around in their crowded dingy uncomfortable waiting room where you have to ask to use a toilet

The stress of dealing with these things is for me, completely overwhelming and leads to an sharp increase in all my conditions. Multiple arthritis sites all get more painful, I don’t sleep, IBS becomes uncontrollable etc. Constant panic. I had an ESA telephone assessment and although I got in a bit of a state- not having to go through the added physical pain and mental anguish of travel just to get bombarded with questions is a no brainer. I have lots of medical evidence of my degenerative disease so an assessment is pointless, especially a face to face one.

Less stress planning and going out. Organising someone to go with me. Expense of travel. Having to get ready having to interact with people.

the thought of going out and travelling for a face to face is what causes me to have panic attack and have suicidal thoughts etc .

I have problems leaving my home and my daughter has to accompany me to assessments which is not always possible- I can’t always make myself go to appointments and risk being sanctioned so telephone assessments would make my life much easier but before lock down I couldn’t opt for this

Face-to-face causes anxiety when it a familiar place with familiar people. Face-to-face with a stranger in a new place gives me a panic attack. You wouldn’t be as insensitive to ask someone who can’t walk to meet you at the running track for a job interview for example. This is the same as asking someone who has panic attacks in pressured and unfamiliar environments to attend one for assessment

everyone should be offered the chance of a phone assessment. they could be someone like me who suffers side effects from their medication and left with a very ‘high’ feeling which when travelling on a bus makes you feel worse and leaves you at risk in the outside world as you are not fully aware of your body movements and could end up under a bus etc. or your illness causes such pain you just cannot get out of bed on the day of assessment but have no choice but to travel and then suffer in pain from walking to the assessment. they just don’t think of people properly and i know from experience it isn’t nice to be in vast pain , get to the assessment centre, struggling with every step you take and nearly getting hit by a car cos you staggered into the road, ( and got called a drunk and disgrace cos its only 8 30 am) and then when you arrive get told your appointment is cancelled!! yes it happened to me and i had to return later that same day, so that made me even worse health-wise having to do everything twice.. make phone assessments a first choice for everyone

The assessor cannot make assumptions about you based on your appearance.
I look very well & I’m fed up of the assessor making me go to tribunal on their “informal observations”!

It makes bizarre assessments of whether I am ‘well groomed’ obsolete. Given that PIP is available in work, I’m not sure how relevant a question it is. Especially when I wasn’t well groomed at all!

I’d just feel more comfortable. Also (this was at an appeal, but I was obviously marked down because my hair looked as though I’d combed it!) The awfulness of not knowing if you’re supposed to turn up looking miserable in scruffy clothes to be believed, when your instincts for any day, but especially for a formal meeting, are to look as nice/well groomed as possible…

It’s very draining going to face-to-face assessments. Also it’s horrible waiting in the waiting room, as well as the fact that the assessors and people in reception are monitoring your every move, and will use that in their assessment. How well do you walk? How do you hold yourself? Do you look sufficiently upset? It makes you much more self-conscious and paranoid. Easier and less stressful to do over the phone. Also can rest much more easily during the assessment.

When people see me they assume I am a healthy looking able bodied person. My disability is hidden, so I get judged straight away eg when displaying g my blue badge. Hence, I’d prefer telephone assessment.

The assessor cannot claim that they observed you doing things that you did not, in reality, do.
When I had my last face to face assessment the assessor made up things that I’d said I couldn’t do , saying I did them. She said I’d dragged to chair around to find a better position. I didn’t, I couldn’t, I just sat in it where it was. That is one example that would be unable to be said if it was over the telephone.

I find Face to Face assessments intimidating, they sent a man to my house to ask personal questions and I hated answering toilet problems to his face, then he went a lied about things he has ‘observed’ that he didn’t observe, such as picking my cup of tea up with ease with my right arm, when my arm was in a sling the whole time.

Limits the use of unreliable observational evidence on mobility etc. Makes covert recording far easier.

My PIP was refused and apart from the usual tripe they put in the reports they stated that i was able to open a bottle of water (i carry a small twister thing that loosens tops they assumed i did it by hand) they also stated whilst i was waiting that i was able to read a magazine and do a crossword, what they didn’t mention was that i had to hold the magazine right up to my eyes to read it. Also they stated i could walk with a stick 17 metres to the interview room, and surmised i could walk 50 metres, also when i got there i was told there would be a 2 hour wait i also had a long wait when i went for a WCA same reason short of staff, i believe this is done on purpose so they can watch what you do while waiting. If the assessment is done on the phone none of this will be taken into account which i think will make the assessment fairer

A telephone assessment may feel less demeaning.
I am able to provide clear paper based evidence of my disability and feel a telephone interview would be sufficient for a decision to be made. I have had to be physically examined by many strangers since childhood and the experience has become increasingly difficult for me, triggers many memories and now I find myself feeling emotional distress at the prospect of exposing my deformed body. Crying in front of a stranger feels humiliating and makes it hard for me to admit the extent of my disability which I can see would be a barrier to an accurate assessment.

As appointee for my daughter, I conducted her telephone assessment in her place. Although we are still awaiting the results, it was far less stressful than any f2f assessments either of us have ever had. Plus it lacked the feeling of being glared at throughout and ‘judged’ (as I’m sure many fellow claimants can relate to).

A face to face assessment would be the best because a number of symptoms of my MS would be visible as would probably symptoms of my my depression and anxiety. However because of previous experience of a face to face for pip I would choose telephone. The so called health professional, an ambulance lady assessing my MS, had no knowledge of my condition, no understanding of the symptoms or variability of them and ignored what I had previously sent in to her. Her report was shocking which I challenged and won but at the expense of my health. My mobility continues to worsen as well making it increasingly difficult for me to visit their centres. In addition I do not wish to visit these centres that have DWP centre all over the front with massive signs. It’s as if they are trying to shame you for claiming. Their is no privacy in walking in to such marked centres. That is why I would probably choose the telephone option.

A telephone assessment is less intimidating and not as humiliating when you don’t have to look your interrogator in the face.

It is so daunting walking into the centre and I feel they are judging me

Because it is far more dignified approach to claimants. And no travelling required …..PERFECT

Face-to-face is exhausting, intimidating and humiliating.

A telephone assessment may be less stressful and damaging
I suffered a total breakdown after the lead up to my face-to-face assessment. That was before I got the result. I was given an award but by then I was so ill and I still (15 years later) suffer a panic attack if a brown envelope comes through the door. Cannot do face to face as I’m too full of anxiety and can’t respond appropriately when I take more meds when I tried I was too drowsy

I’ve begged them to do a telephone assessment in the past, as the face to face ones make me self-harm and there’s nothing to actually look at since all my problems are mental health- related. They’re basically choosing to torture me just so they can see me suffer and then lie about it on the report.

It’s so scary to me attending these face to face assessments as my mental health makes me very unpredictable and violent at times. I can always hang up the phone when stressed, rather than shout at or attack someone who is just doing their job. Telephone would be much more helpful for me.

I ticked the telephone option. This was based on my recent experience. I became overwhelmed with extreme debilitating trauma when facing my up coming face to face assessment. I was left too unwell to attend. I felt totally unable to leave my house, so I didnt go. The telephone assessment I was recently offered, as a replacement, needed me to do alot of work to be able to take the call, but it was the only option I had left. It did go ahead and was a better experience for me, by the fact I was able to be assessed. Ironically I feel my ability to take the call will no doubt impact on my Pip award result, which I havent had yet.

An assessment is extremely stressful and my carer/partner has to get me psyched up for it. The one telephone assessment (PIP) I had was less stressful than the 2 face-to-face assessments (1 ESA, 1 PIP) I have had in the past.

You may find it easier to talk about difficult issues over the phone rather than in person.
I ticked the telephone option. This was based on my recent experience. I became overwhelmed with extreme debilitating trauma when facing my up-coming face to face assessment. I was left too unwell to attend. I felt totally unable to leave my house, so I didnt go. The telephone assessment I was recently offered, as a replacement, needed me to do alot of work to be able to take the call, but it was the only option I had left. It did go ahead and was a better experience for me, by the fact I was able to be assessed. Ironically I feel my ability to take the call will no doubt impact on my Pip award result, which I havent had yet.

I get very self-conscious in such situations and my appearance ‘presents’ well, so people seem to find it difficult to believe I am struggling. I feel it is fairer to be heard rather than judged on my appearance. Also I have ADHD and am very likely to get timings wrong for appointments so it’s better if they ring me rather than me forgetting to turn up for an appointment. Also it can be a traumatic experience having to intimately discuss my condition in detail so I prefer the security of my own home.

Face to face I put on a persona as if I’m fine when I’m dying inside. I didn’t get any points for my mental health for this reason and I think a phone call would help me better be myself.

The main advantages of a face-to-face assessment.

These are some of the reasons that some respondents said that they would choose to have a face-to-face assessment.

The assessor can see the difficulty that you experience with physical activities.
There’s just no way to tell on the phone how bad a physical disability is. I need them to see how I move to understand the problems I face every day.

As it is physical health condition i would like them to see how bad i am at moving about. I could not show then how i am at that time if it was telephone assessment.

I’ve gone through a few face to face with no problems, first telephone interview, shambles! Benefits cut, possible payback because they may have paid me too much etc, etc. I feel like a complete fraud after reading the result. Face to face, by a professional, was so much easier. And reliable. I’m now quite literally, stuck at home all the time. I did have a car but now it is going and I can’t get anywhere.

Just had a phone assessment and they left out vital parts of my mental health along with mobility I got the standard rate £58 pw, going to appeal against this. (stroke)

The HCP at Face to Face gives you a physical examination Blood pressure cardio Aural and sight tests mobility etc ..by phone does not…So Face to face is my choice.

The assessor can see if you are anxious and struggling to communicate.
Body language was vital to my successful appeal. It was remarked upon (nervousness, anxiety). This would in no way be possible over the telephone

I’ve just had a telephone assessment and have lost my enhanced mobility, just 18 months after getting it. I’m sure if they saw me at a face to face they would see what state I get in whilst outside. Now have to go through this horrible process of MR and Appeal.

I was awarded standard PIP on mental health grounds. One of the points made by the assessor in support of my claim was that I had poor eye contact. Obviously this kind of issue would not be obvious in a telephone conversation.

In a face to face assessment the assessor would be able to see the anxiety this caused somebody. My son hardly ever goes out and this is a large part of his claim. On a telephone assessment my son would say anything to get off the line as quickly as possible since he doesn’t handle telephone calls well at all.

I am relatively articulate and this seems to work against me. If they can see my shaking and my anxiety then it helps to convey the difficulties I have, which include communicating when stressed. On the phone it would probably just be a silence and a non-score for some questions.

I am not confident talking to strangers on the telephone and would probably agree with everything they say and let them put words into my mouth that are incorrect.

I ‘freeze up’ get ‘tongue tied’ and cannot think straight when using telephones. Without realising, i speak to loudly to people on phone calls, those who don’t know me think i am being belligerent or angry. I am not but I struggle to hear clearly and always automatically assume others can’t hear me, so I try to compensate by raising my voice which unfortunately gives the wrong impression to those who don’t know me.

Because I had a telephone assessment and the nurse was not able to see me physically struggling and my mental health psychotic panic attacks and I had to put in a MR last week

I wasn’t able to adequately display my physical issues over the phone and as stated in my Capita telephone assessment, ‘the client showed no symptoms of anxiety or socialisation issues whilst speaking with the assessor. Therefore, we assume that the client does not require help in this section’ I suffer with anxiety and panic attacks, not only brought on by my epilepsy but by agoraphobia, being in crowds and the thought of speaking on the phone. My Capita telephone assessment did not correlate at all to what my life troubles are.

Several people I know have had phone assessments and scored very low. One was told ‘you Managed the call without support’, even they were self-isolating and had phone support to prepare, but no access to support during the call. I can take an advocate to a face to face assessment.

It’s a difficult one. I struggle to be around people and to be in the same room as a complete stranger does severe damage to my mental health for days to come, but I feel like they have to see that in me, or they’ll just dismiss it.

You can see how the assessor is responding to what you say and be sure that they are paying attention.
Although I hate having face to face assessments, I’d rather that the assessor saw me and saw the problems I have. It’s also good to see the assessor too. Watching their body language is useful for clues as to whether they have taken all that I’ve told them, onboard. It’s also good to be able to check that they are checking and reading the evidence I’ve submitted.

Although face-to-face assessments are an ordeal, I think eye contact and body language are essential, both for the claimant to express fully how their conditions impact on their daily life and to gauge the ‘response’ or understanding of the assessor.

A telephone assessment would be too impersonal for me to get my point of view across as it would feel like I was talking to a machine.

Assessors can’t see any non-verbal communication + you can’t see theirs especially if they are indicating in body language they don’t believe you. You cannot see if they are listening properly or understand what you are saying. It is harder for a support person to contribute by phone. Phone lines can be poor especially if on mobile. They might claim they have phoned when they haven’t + you can’t prove it.

I like to look the HP in the eyes. See their reaction and how they conduct themself s. I ask them to look at me when asking me a question. These things you cannot do over the Phone.

I would prefer a face to face assessment because I feel I cannot express myself over the phone, I tend to get flustered, Also you cannot tell if the assessor fully understand you.

You can assess the situation better when in face to face meeting by body language etc

I feel the need to see the interviewers’ reactions, to question and if necessary challenge their statements and to read their body language. I would find a telephone assessment much easier to manage but all in all I trust my own judgement in a face to face situation.

I think body language of the assessor is an important part of the assessment. Making sure they have looked at the evidence submitted and actually read the application form is more difficult by phone

For claimants who are deaf or hearing impaired communication face-to-face may be the only option.
I am deaf and use hearing aids. I struggle on the phone, as I cannot distinguish consonants. I need face-face to enable me to hear and lip read together.

I am extremely deaf but with speech. A telephone assessment would be ridiculous as I cannot lip read over the telephone!

If you are like myself Profoundly Deaf and has a serious problem with Hearing and needs to Lip Read you cannot use Telephone Assessments. There must be Hundreds or even Thousands of Disabled People who are in this same position.

A face-to-face assessment cannot be sprung upon you like a telephone assessment may be.
Can stay at home, and chances are it would be at allocated time. I have Asperger’s and also visually impaired.

Can’t cope with the uncertainty of when they are going to call, and my support person would have to be waiting on hand too. Much prefer to have a set appointment time, no matter how stressful that is.

In a face to face assessment you have more time to prepare. Whereas by telephone we heard accounts of DWP just phoning people out of the blue and expecting claimants to answer questions unprepared

You can be reasonably certain of the confidentiality of the interview, which is not always the case where an assessor is working from home.
Privacy. Who knows who is listening to a telephone conversation, especially if it’s in the assessors home.

I don’t like the thought of the telephone assessments because I have heard reports that they work from home and people have heard back room noises which tell me there is other people listening in

Just had mine today! Was fairly painless, though the girl at the end of the phone had hay fever and was interrupted briefly by someone entering the room! Will know better when I get the DWP decision!

I would want to be able to see who was listening to my private information after hearing stories about people working from home having family members in the room during telephone Assessments

I would not trust the assessor to be in a confidential place on a telephone. How would I know. who else was in the room?

Autism spectrum

Finally, we have included some of the many responses we received from people on the autism spectrum, to show how having the same broad diagnosis does not mean you have the same preference when it comes to being assessed.

I had a telephone assessment a couple of months ago. I am autistic with learning and communication difficulties, I live alone and have no support. All this was on my forms yet I had no notice of the call and was clearly out of my depth. Because of this some of my answers were led by the assessor because I couldn’t explain which affected the results. One of the criteria for a diagnosis of ASD is communication difficulties yet I was awarded 0 points on this. A face to face assessment (or at least prior notice) would have given me a chance so they get to see how I behave and react to the situation instead of guessing. I also think that they need to employ assessors who know about the conditions of the people they are assessing. i have autism and I do not always understand what I am being asked.

[Telephone assessment] Gave time to think what I wanted to say. Felt less pressured as an autistic person despite thinking I would find it more stressful as I don’t like using the phone.

Autism makes it difficult to understand and explain things. Need someone with me in this.

Due to anxiety I am unable to answer the phone, this relates to my autism condition

Social interaction is a major factor of my Autism, a face to face assessment would be an obvious indication of my disability.

I cannot use a phone, cannot think quick enough, often don’t get meaning of question correct. Lady who came to assess me for pip at my house was kind and could see I got confused and found words hard to find and say – telephone can’t see that. Am autistic

Because of my autistic spectrum disorder and mental health issues I would not have to fight for a home assessment so having a telephone assessment would take the pressure off me.

Cannot use a telephone due to being autistic AND i need a social worker or CPN with me. Telephone would be no good at all.

Part of my disability (autism) is that I can’t cope with the phone. The idea of the combined horror of a PIP assessment and a phone call is beyond imagining.

I am the appointee for my Autistic daughter. I also work. For my convenience and the sake of her mental health, telephony is better. Have had a home visit where the write up by the so called professional was a fabrication of falsehoods. We have also had experience of medical boarding centre, which reduced my daughter to a quivering mess, however the HCP was so much more understanding and made a more reasoned report. I personally think it is who does the assessment, rather where or how (in my daughter’s case). For your information I am a decision maker with DWP (not PIP or ESA PCA) and find the whole process from claim completion to medical unbelievably stressful and confusing, so how on earth anyone else manages to copy with the system is beyond me.

I have Aspergers as well as many other health conditions and find both face to face and telephone very difficult but telephone more so as I cannot bear talking on the phone to people I do not know.

 

4 Wheel City- Black Disabled Rappers

July 27, 2020
Black New Yorkers Ricardo Velasquez and Namel Norris were shot and paralysed when they were teenagers. As rap duo 4 Wheel City they have received global acclaim and raised the prominence of Krip-Hop – a sub-genre of Hip-Hop which puts disabled matters front and centre and lets them express the “double drama” of being in two minority groups
Rick headed home from high school. It was the summer of 1996. The holidays were approaching and his sweetheart was pregnant. But in a single moment everything changed.
A gun was fired nearby and he was hit by a stray bullet.
“I don’t know who shot me, but I ended up in a wheelchair,” he says.
In the same Bronx neighbourhood was 17-year-old Namel. He was at home with his cousin.
“We grew up in the street so we were involved with guns and one day he was playing around with one,” Namel says. “It went off and the bullet struck me in my neck.”
Both teenagers, wounded at different times, were paralysed and became wheelchair-users.
They now had to come to terms with being part of TWO minority groups – black and disabled.
“It’s like you’re doing a double life sentence,” Namel says.
“Imagine that, being black and disabled,” Rick echoes. “That’s a double drama. It’s like your voice is not heard in a double way. You’ve got all these barriers.”
In 2020s language, having two ‘protected characteristics’ like this is referred to as intersectionality and could lead to double celebration – or double the discrimination.
It was Namel’s mum who first met Rick. He gave her his number and said Namel could call him.
But after Namel was discharged he simply wanted to get back to what he’d always done. He met up with his old friends, but it wasn’t the same and all the dynamics had changed now he couldn’t walk.
“One of my friends I used to rap with, wasn’t hanging out with me as much,” he says.
Namel contacted Rick who said he had experienced the same kind of thing with friends and family who no longer knew how to talk to him because he was in a wheelchair.
He began to hang out at Rick’s recording studio because it was a place he felt he would “be understood, be heard”.
The pair wrote Hip Hop tracks together as Rickfire and Tapwaterz but the rap market was so saturated that it was difficult to stand out.
At the same time, Namel was getting fed-up with the constant questions people kept asking him about his injury – “questions like, ‘Are you going to walk again?’ and, ‘Does this work?’. I was tired of people asking.”
He took his frustrations out on the page and wrote In My Shoes – a track which dealt with those personal questions.
“It felt good to be able to express myself like that,” he says.
Getting more political, the duo penned another song – The Movement – about the inaccessibility of shops in New York.
It made an impact. When they returned to the street where they had filmed their music video, the stores had ramps.
“That’s the song that really put us on the map,” Namel says. “Music has always been a form of protest.”
Their music falls within the little-known sub-genre Krip-Hop – a movement which gives disabled hip-hop artists a platform to educate and deal with ableism alongside racism and sexism.
Krip-Hop was founded by Leroy F. Moore Jr. an African American writer and activist with cerebral palsy who wanted to use rap culture as a way to reclaim negative language associated with disability.
The latest album from 4 Wheel City, Quarantine Music Volume 1 – released during lockdown – dives into the double minority identity of being both black and disabled
 
The track Crazy World and its accompanying video reflects upon the police killing of George Floyd in Minneapolis and the Black Lives Matter (BLM) protests which followed.
Namel says: “The song is about how crazy the world is right now and being able to deal with it as a person with a disability.”
The video flits between Namel in an ambulance wearing a facemask on his way to hospital, George Floyd’s death and the protests.
The pair say the death of Mr Floyd and the subsequent BLM protests has helped them explain to others how they felt when their lives altered through disability.
“When your life gets changed or flipped upside down it makes you think differently,” Namel says. “I think that’s why a lot of people out there are protesting right now because I feel like they had a wake-up call.”
Namel and Rick channelled their wake-up calls through lyrics which often have a political edge as they put into words what being black, disabled and American means to them.
4 Wheel City say there is a lot to be done to reach equality and while they want change on a global scale they also want to affect change in their local community.
Mount Sinai Hospital commissioned them to rap about pressure sores – a serious problem for people with spinal cord injuries who may sit in their wheelchair for long periods of time – and a local organisation, Being First, recruited them to talk about the perils of gun violence to school students.
But there are obstacles within that.
“I don’t want to be racist,” Rick says, but the fact is “white people run most of the organisations” and yet, “if you come to the black community most of us are in wheelchairs due to injuries like gunshots”.
Namel adds: “Our talent could be used to make a difference”.
 
4 Wheel City have previously rapped at the UN and want this month’s 30th anniversary of the Americans with Disabilities Act, which prohibits discrimination based on disability, to be marked with meaningful movement forward.
Namel says: “I know it can be discouraging and it’s easy to say, ‘well I’m black and they don’t want to listen’, but what Rick and I did, we tried to remove that barrier [through music].”
Rick adds: “Don’t be afraid to be different and go out there and put your voice out there and embrace the struggle.”
The rap duo last performed in the UK in 2012 at the London Paralympics, a unifying and positive event for disabled people around the world. But they say the summer of 2020 with Covid-19 and BLM protests has, in some ways, made them feel the same.
“It was being black and American and disabled,” Namel says. “I felt that sense of pride. Just knowing that our music matters on the world stage.”

DWP Change Guidance On Stopping Benefits As They Face Court Action From Graham Family

July 27, 2020

With many thanks to Benefits And Work.

The DWP have been forced to change the guidance on safeguarding claimants as they scramble to avoid being savaged in court by the family of Errol Graham. Claimants with mental health conditions should now be much less likely to have their benefits stopped if they miss a work capability assessment (WCA).

Errol Graham was 57 when he starved to death in June 2018. His ESA and housing benefit were stopped after he failed to attend a work capability assessment. This was done without checking on his mental or physical health wellbeing, even though he was known to have serious mental health issues.

In February of this year, Errol’s family began the process of launching a judicial review challenging the legality of the current safeguarding policies and the failure of the DWP to revise those policies.

Just this week we reported that the family had now been granted a two day hearing in the High Court.

Suddenly, without any prior consultation or discussion, the DWP have announced that they have changed the safeguarding procedure for vulnerable claimants so that a case conference will take place to try to avoid stopping benefits in the way they were in Errol Graham’s case.

In addition, having insisted that meetings of the Serious Case Panel (SCP) were secret and not subject to the Freedom of Information Act, the DWP have now published the minutes of the panel online.

The SCP, which was set up to look at claimant deaths, has met only twice so far according to the minutes.

In March, immediately after Graham’s family began their legal proceedings, the committee discussed the issue of stopping payments and, in a flurry of jargon, decided that:

“The Customer Experience Directorate will start a cross-government dialogue in the adult safeguarding space and suggest that government departments and agencies co-develop a way to join up to support vulnerable citizens where there is no clear lead department to provide that support.”

At the Work and Pensions Select Committee meeting on 22 July, the DWP said that in future, if they are unable to contact a claimant who has missed their WCA:

“ . . . we would then take that back and have a case conference about the individual and particularly, obviously if it’s someone with vulnerabilities that we know about, then we would seek to involve other organisations that might have a different way of knowing about that individual. …And then we would seek to understand what do they know about that individual and how can we support them.

“And if that fails that could then be escalated to the safeguarding leads. And in that way basically what we’d seek to do is provide support not removal of benefits.”

Solicitors Leigh Day, who are acting on behalf of Graham’s family, expressed their surprise at the announcement and made it clear that they want to see the guidance issued to decision makers on this subject:

“In her legal case our client has been calling for urgent changes to be made to the DWP’s safeguarding procedures on the basis that the current policies are unlawful as they fail to adequately protect vulnerable claimants like Errol, but the DWP has repeatedly refused to revise those policies.

“Today’s announcement that the procedures have changed is news to us and news to our client. Whilst we cautiously welcome the announcement, it is imperative that the Secretary of State publishes the relevant guidance immediately so that our client and the public can see whether it actually requires decision makers to liaise with different agencies in cases like Errol’s and whether enough has been done to ensure that the vulnerable are adequately protected.”

We will keep readers informed as more information, and hopefully guidance, becomes available.

 

Mandatory Reconsiderations Ruled Unlawful For ESA, Benefits And Work Members Thanked

July 27, 2020

With many thanks to Benefits And Work.

A claimant thanked Benefits and Work members after his victory in the High Court, which ruled it is unlawful for the DWP to force Income Related Employment and Support Allowance (ESA) claimants to have a mandatory reconsideration before they can lodge an appeal.

Last November we asked readers to help fund an attempt by a claimant Michael Connor, who was also a law graduate, to have the mandatory reconsideration process ruled unlawful.

Our members responded with great generosity, to the extent that the original target of £3,000 was smashed. Over £7,500 was raised in the end.

Connor had been forced to wait 18 weeks by the DWP whilst they carried out a mandatory reconsideration of his ESA decision. During this time he had no right to claim ESA at a rate paid to claimants once they have successfully lodged their appeal.

The court found that forcing a claimant to wait until until an appeal is lodged to be able to receive ESA again was in breach of their right to a fair trial.

Judge Swift ruled:

“It is anomalous that the payment pending appeal arrangements for ESA under regulation 30(3) of the ESA Regulations do not extend to ESA claimants who are required by regulation 3ZA to request the Secretary of State to revise a decision and await her decision on that request before initiating an appeal.

“My conclusion is that regulation 3ZA of the Decisions and Appeals Regulations is a disproportionate interference with the right of access to court, so far as it applies to claimants to ESA who, once an appeal is initiated, meet the conditions for payment pending appeal under regulation 30(3) of the ESA Regulations.”

Sadly, the ruling does not apply to other benefits such as PIP or DLA.

Nonetheless, it is an important victory and it means that ESA claimants, who are often faced with the prospect of many weeks without funds if they wish to appeal, are now in a much better position when challenging a decision.

Connor had particularly warm words for Benefits and Work readers after receiving the decision:

“The judicial review was only made possible by the support of Benefits and Work members. Without this support ESA claimants would still have to endure the draconian mandatory reconsideration process without any appeal pending benefit. Benefits and Work is the leader in grassroots support for benefit claimants and I am honoured to have their support”

You can read the full decision here.

Karolina Pakenaite Faces Disablism On Train For Removing Mask

July 26, 2020

We’re shocked by the video and press release below. Disability exemptions from wearing face coverings have never been a secret. This should go viral so that it never happens again.

https://www.dailymotion.com/video/x7v7t68

Video Credit: Sense

Press release:

A shocking video has highlighted the abuse disabled people are experiencing in the wake of new rules about wearing face masks in public.

Karolina Pakenaite (24), from Southport, has Usher Syndrome (which affects sight and hearing), and was travelling with her sister, Saule (16), and guide dog, on the Merseyrail train, from Liverpool Central to Southport, on Thursday 16th July, when they were challenged by a member of the public for having temporarily removed their face covering.

Saule, had temporarily lifted her face covering so her sister, Karolina, who is deafblind (deaf and severely sight impaired, registered blind) could read her lips.

Government guidance states that disabled people who cannot safely wear face coverings are exempt, as are people who are providing support to disabled people who may rely on lip reading, facial expressions and clear sound for communication.

In the video, the passenger doesn’t accept the pair’s explanation and then challenges them on the description of Karolina being ‘deafblind’, which causes a heated argument, before a member of the public intervenes.

–

From today, face coverings have been made compulsory in all shops and supermarkets in England and Scotland – as well as on public transport.

A rise in reports of hostility from members of the public towards disabled people for not wearing face coverings, has led to the government issuing an “exemption card” which disabled people can wear to show they don’t need to cover up.

Charities have called on the Government to do more to promote public awareness on who is exempt from the new ruling, to protect vulnerable groups.

Karolina Pakenaite said:

 

“I can no longer stay silent about this as I keep experiencing attacks and hearing similar experiences from others too. It’s taking an effect on my mental health.

Not enough people are taking this pandemic seriously but this behaviour is never acceptable. Please, respect people individually, ask us, listen, discuss and I am always happy to hear ideas for alternative solutions, but harassment, name calling or any type of abuse or aggression will never be ok.”

 

Richard Kramer, Chief Executive, of disability charity, Sense, said:

“Sadly, this isn’t an isolated incident. We are hearing lots of reports of disabled people, and those supporting them, being challenged for not covering up.

These experiences cause distress and anxiety, and lead many disabled people to feel they have to stay at home, where they become isolated.

We welcome the government’s introduction of ‘exemption cards’, but more must be done to raise public awareness of who is exempt from wearing face coverings, so the public are on board and disabled people feel supported.”

Pete Osborne, Director of Operations at Guide Dogs, said:

“We are so sorry that Karolina and her sister had to go through this distressing incident. No one with a disability should have to experience this kind of abuse.

The new environment is difficult enough for people with sight loss and other disabilities to negotiate, so we really need everyone  to understand the challenges people are facing every day.

Such distressing incidents can result in people feeling they can’t go out at all, adding to the real isolation people with disabilities experience.”

Southport MP Damien Moore said:

‘I was extremely disappointed to see the very unpleasant incident unfold on board this train.

‘The rules on wearing face coverings on public transport have been in place for some time now, and have also become mandatory in shops and supermarkets from today.

‘I have been pleased to see the vast majority of people locally have been happy to comply with the requirements, which are designed to keep ourselves and others safe from the transmission of Coronavirus.

‘However, it is important that people know that there are exemptions to the wearing of masks, and these are in place for very good medical reasons. Finding these exemptions is easy to do through the Gov.uk website as well as through other sources.

‘Since the start of the Coronavirus outbreak, we have all had to get used to new ways of life and new ways of doing things. As we do so I would urge everyone to show kindness, tolerance, patience and understanding towards others.’

Culture Abuse Split Up After Sexual Abuse Allegations Against David Kelling

July 24, 2020
San Francisco punks Culture Abuse have decided “to no longer continue with this band” following allegations of sexual misconduct regarding frontman David Kelling.

Culture Abuse have announced that they are calling it a day after frontman David Kelling publicly addressed sexual misconduct allegations.

In a statement posted to his personal Instagram account, the singer/guitarist said that as stories have come to light about “how toxic the music scene has been”, David has to recognise where he has “been guilty of similar behaviours”.

“Ten years ago I was 22 and slept with a 17-year-old,” he writes. “I led her on and pressured her and over time left the relationship without checking in on her feelings. Now come to find out it caused pain that she has had to deal with all the time. She did not deserve that in any way. We spoke on the phone today with both of our partners present and she said she accepted my apology, though she didn’t have to.

“But this is not the only instance where someone deserves an apology and this has not been the only time where I have acted without considering others emotions. The guilt I have felt has been overwhelming and I didn’t know how to open up or go back and fix it on my own. Or to tell people I do not want to be put on a pedestal because I have been a fuck up that’s trying to work on myself.

“Three years ago I met my girlfriend and she’s been pivotal in showing me the ways my behaviours are wrong and how to be a better partner and person. I’ve tried to grow as a person and love myself and treat the people in my life with empathy. I’m far from perfect, but I have been trying. And I’ve reflected and grappled with the angry younger person I was. I know this doesn’t fix the past mistakes or excuse me from the work I know that I need to continue to do. I recognise that it is time that I find the help I need and do my best to right my wrongs. I am so sorry to anyone I have hurt. Nothing makes it better but I promise to try and do my part. If anyone wants to reach out please do. I want to be better and I want to be fully accountable.”

He finishes his statement by writing: “How can I preach about peace, love and equality when my past has caused people pain?”

As the news came to light, the remaining members of Culture Abuse wrote in a joint statement of their experience with David that they took his “erratic behaviour” as “an immense passion for this band and David’s ultimate goals in the music. Some people can say that this was our way of allowing David’s behaviour to continue but we looked at it as a support system to help a person change.”

They add that, “We are well aware that this does not fix the pain caused but we are hoping it’s a first step. There are no excuses for this behaviour and it cannot be allowed,” encouraging that David seek therapy while also confirming that they will “no longer openly associate” with the frontman.

“This [social media] account name will be changed to extract the word abuse and will no longer be used to promote what this band was,” Culture Abuse continue. “We will use this platform to educate and share information and important articles for abusers and victims. This is a mens issue, and we are aware of how many men follow this account specifically, and it is our duty to hold each other accountable and in hopes create a safe community for all.”

Coronavirus: Will People Be Rushing Back To The Gym?

July 24, 2020

On Saturday gyms in England will be opening their doors for the first time in four months. But with the rise of online workouts and outdoor exercise during lockdown, will people be rushing to go back?

For Lee Chambers keeping fit without the gym has been a struggle.

The 35-year-old from Preston has an autoimmune condition which weakened his joints and just six years ago left him unable to walk. He says access to the specialist equipment at gyms has been crucial to his recovery – both mentally and physically.

Normally he would go three times a week and can’t wait to return.

While he’s tried home workouts – his wife’s handbag weighed down with cans has doubled up as a kettlebell and his children’s swing frame has been used for pull-ups – it hasn’t quite been the same.

As well as being able to use adjustable weights equipment to strengthen the muscles around his joints, Lee says the gym also helps him switch off from the stresses of his work and home life.

“I don’t take my phone in – the only inputs and stimulus I have are training my body,” he says. “It’s almost cathartic because it’s just me on my own, pushing my own boundaries. There’s no other distractions.”

Others have missed the social aspect of exercising together.

Two years ago, Karen Webber set herself the goal of getting fit before she turned 40. She had never been a sporty person before but after joining her local gym in Stockport she enjoyed being part of a community and meeting new people.

“Being able to exercise with people who share your motivations and encourage you, there’s something really powerful in that,” she says.

When lockdown started, like many others, Karen’s gym immediately switched to online classes, putting on several sessions a day and loaning equipment to members. There were also monthly challenges, virtual family sports days and even workouts in the gym’s car park.

However, Karen says she still missed the atmosphere of the gym and the motivation it gave her.

“It’s very easy when you’re slightly off screen or you’re not doing a live class to just not go as hard as you would normally,” she says.

“When you’re in the gym you can’t get away with just leaving the class when you’re tired. “

Karen admits she is still a little apprehensive about returning – she hasn’t been indoors with anyone except her family since March.

She’ll be easing herself in with a weightlifting class on Monday and will stick to online cardio sessions for now, worried about the virus spreading through heavy breathing.

Many gyms and personal trainers – including Karen’s – are continuing to offer online classes for those who don’t yet feel ready to return.

But this hasn’t been enough to stop some people cancelling their memberships.

The Gym Group, one of the UK’s biggest companies in this sector, says it has lost about a fifth of its members during lockdown, despite halting payments.

Lisa Collins, who used to go to the gym four or five times a week, is one of those who won’t be renewing her subscription. Fees had been suspended during lockdown but when her gym emailed to say they would restart in August, she felt it was just too soon.

“Suddenly going into a gym with hundreds of people going in and out feels a bit terrifying,” the 49-year-old says.

But even without the safety concerns, Lisa isn’t sure she can still justify the monthly membership fee.

“My life has changed so much since lockdown,” she says. “Before I would drop the kids off at school, go to the gym, shower and go out to work.

“But now I’m not out and about as much it just feels so much easier to roll out of bed, put my gym kit on and join a Zoom yoga session instead.”

Lisa has enjoyed the flexibility of online classes, where she can pay per session rather than through a monthly subscription. There’s also no longer the risk of classes being booked up. Even before lockdown she says it was difficult to get a slot at her local gym but now, with many centres reducing class sizes, it will be even harder.

For Lee, however, the new requirement to book before visiting his gym is appealing – and it’s one of the reasons why he’s reassured enough to return, along with the extra cleaning measures in place.

The limits on numbers will mean the equipment he wants to use is more likely to be available, as well as enabling social distancing.

“It’s going to be more hygienic than it’s ever been before,” he says.

“So it’s got to the point for me now where the benefits just about outweigh the risks.”

Disabled Benefit Claimants Issue Claim For Lost Income Under Universal Credit System

July 23, 2020

More than 300 severely disabled people have issued a claim in the High Court for lost income under the universal credit system.

The group, represented by Leigh Day solicitors, say they have each missed out on at least £170 a month since they were moved on to universal credit as the new benefits system has been rolled out across the UK.
 
All of the group were moved on to the system before January, 2019 and lost the severe disability premium which they had previously claimed, which left them worse off.
 
However, severely disabled people who have been moved on to universal credit since January 2019 have not missed out on the severe disability premium.
 
Instead, their universal credit claims have been managed by the Severe Disability premium Gateway system which has been put in place to ensure that severely disabled benefits claimants do not end up worse off under the universal credit system.
 
The claimants argue that they have suffered because of the unlawful implementation of the Universal Credit  (Transitional Provisions) 2014, the SDP Gateway Regulations, January 2019, and the Managed Migrations Regulations 2019.
They claim they have suffered discrimination under Article 14 of the European Convention on Human Rights.
 
The claim has been issued after Secretary of State for Work and Pensions, Therese Coffey, failed to substantively respond to a Pre Action Protocol letter sent on the claimants’ behalf by Leigh Day solicitors.
 
They believe that up to 13,000 disabled people in the UK have been affected by the change and may be entitled to make a claim to retrieve lost benefit payments.
 
Leigh Day solicitor Ryan Bradshaw said:
 
“Our clients believe that it clearly cannot be right that they find themselves £170 a month worse off under the universal credit system when other claimants have the assurance that they will not be worse off on universal credit.”
 
The claimants are asking the SSWP for compensation equal to the amount of money they have lost following their transfer to universal credit, for their previous level of benefits to be restored and maintained until a lawful migration scheme is established, and for compensation for the stress they have been caused.

Kim Kardashian West Addresses Kanye West’s Bipolar

July 22, 2020

Kim Kardashian West has publicly addressed her husband Kanye’s mental health issues following a series of erratic statements in recent days.

She wrote on Instagram: “As many of you know, Kanye has bi-polar disorder.

“Anyone who has this or has a loved one in their life who does, knows how incredibly complicated and painful it is to understand.”

He is a “brilliant but complicated person” whose “words sometimes do not align with his intentions”, she said.

The rapper is one of America’s biggest music stars, and is currently attempting to run for US president. But his first campaign rally and a number of recent Twitter messages have sparked confusion and concern.

Kim and Kanye married in 2014 and have four children together.

In her message on Wednesday, the TV personality and model said she had not previously spoken publicly about how his mental health had affected the family “because I am very protective of our children and Kanye’s right to privacy when it comes to his health”.

She wrote: “But today, I feel like I should comment on it because of the stigma and misconceptions about mental health.

“Those that understand mental illness or even compulsive behaviour know that the family is powerless unless the member is a minor.

“People who are unaware or far removed from this experience can be judgemental and not understand that the individual themselves have to engage in the process of getting help no matter how hard family and friends try.”

Kardashian West went on to say her husband was “subject to criticism because he is a public figure and his actions at times can cause strong opinions and emotions”, but asked for greater empathy and understanding.

“He is a brilliant but complicated person who on top of the pressures of being an artist and a black man, who experienced the painful loss of his mother, and has to deal with the pressure and isolation that is heightened by his bi-polar disorder,” she added.

“Those who are close with Kanye know his heart and understand his words sometimes do not align with his intentions.

“Living with bi-polar disorder does not diminish or invalidate his dreams and his creative ideas, no matter how big or unobtainable they may feel to some.

“That is part of his genius and as we have all witnessed, many of his big dreams have come true.

“We as a society talk about giving grace to the issue of mental health as a whole, however we should also give it to the individuals who are living with it in times when they need it the most.

“I kindly ask that the media and public give us the compassion and empathy that is needed so that we can get through this.”

Coronavirus: Care Home Visits To Resume In England

July 22, 2020

Families and friends can start to be reunited with their loved ones in care homes in England, the government has said, as it publishes new guidance.

Visits will resume in specific care homes once local authorities and local public health directors say it is safe.

However, the guidance says visits should be limited to one consistent person per resident, where possible.

Until now, visits were limited and dependent on local infection rates and the individual care home.

Health Secretary Matt Hancock said: “I know how painful it has been for those in care homes not being able to receive visits from their loved ones throughout this period.

“We are now able to carefully and safely allow visits to care homes, which will be based on local knowledge and circumstances for each care home.”

The government said visits could resume after the rate of community transmission of coronavirus had fallen, but staff, residents and visitors should observe its guidance to minimise the risk of spreading the virus.

It says care providers should consider whether visits could take place outside, without people having to go through a shared building, and visitors should stick to social distancing guidance while avoiding hugs or handshakes.

Ad hoc visits should be discouraged and providers should collect contact details of visitors to support NHS Test and Trace, the guidance says.

Visitors should also be encouraged to wear a face covering and to wash their hands thoroughly before putting it on and after taking it off.

Gifts for residents should be easy to clean by care home staff. “It is unlikely that they will be able to bring flowers but a box of chocolates that could be sanitised with wipes would be allowed,” the guidance says.

Some care homes in England have been allowing socially-distanced visits in outdoor areas since June, in the absence of government guidance.

Care England, the country’s largest representative body for independent providers of adult social care, said it was “disappointed” the guidance had come so late.

Chief executive Professor Martin Green said: “This guidance should have been with care providers last month.

“We are at a loss to understand why the Department of Health and Social Care cannot act quickly in a crisis or why it is deaf to the comments and input from the sector.”

Risk assessments will happen before homes reopen, the government said.

Funny Peculiar- Cast Announcement

July 22, 2020

Funny Peculiar is the latest lockdown production from Little Cog as part of the Staging Our Futures programme. Written and directed by Vici Wreford-Sinnott, the piece also stars Liz Carr of Silent Witness fame, Mandy Colleran, a comedian and activist, and Bea Webster who is currently an associate of both the Royal Shakespeare Company and The Playwright’s Studio of Scotland.

Vici said, “We are absolutely thrilled to be working with such an amazing cast to tell the stories of disabled women. It feels more important now than ever that we ensure we are visible”. Vici is referring to the figures recently released showing that disabled women are 11.9 times more likely to die in the current pandemic than other people. Vici continued, “Terms like ‘vulnerable’ and ‘underlying health conditions’ have led to thinking that the deaths of certain groups of people are inevitable. Expected and accepted”.

Little Cog decided to challenge that belief and develop work that celebrated disabled women in their rich and complex glory. “We are so excited to be working with Liz, Mandy and Bea. Vici has spent time discussing disabled women’s experiences with all cast members and is writing bespoke work for the actors.”

Liz Carr is known to millions for playing Clarissa Mullery in the BBC’s Silent Witness for 8 years but Liz is many things. She is an actor, comedian and disability rights activist. Others will know her from the Disabled/Deaf women’s comedy group, Nasty Girls or the BBC Ouch! podcast with Mat Fraser or her stand up with Abnormally Funny People, her Criptease routines or her passionate opposition to legalising assisted suicide through both campaigning and her creation of the show, Assisted Suicide – The Musical.

Liz said, “I’m thrilled to have this chance to give voice to and highlight the fears, dark humour and incredible resilience of Disabled women as together we fight for our very existence not just during this pandemic – but always.”

Just what is Funny Peculiar and when can you see it?

Zsa Zsa, Raquelle, Blanche and Cuba are in quarantine – four disabled women locked down, locked in, shut up and shouted down. While the rest of the nation is in meltdown, it takes a lot to phase this quartet. The new terrain is worrying and frustrating but these women are prepared – perhaps they have waited for a moment like this their whole lives. In a sequence of four original, cross-cutting, witty and wise monologues, broadcasting from their own homes during quarantine, these women are myth-busters giving their all to expose the lie of vulnerability.

“Writing and rehearsals are under way – this piece is particularly of this moment and we don’t expect to see any of our broadcasters making work like this, although we’d love their support, so we just thought, okay then, let’s make it ourselves and the response and interest has been phenomenal”, says Vici. “There is a danger with a period of potentially prolonged isolation that we could disappear from view, and we were in unanimous agreement that none of us is prepared to let that happen. So here we are making glorious work together.”

Mandy Colleran has been involved in Disability Arts since the 1980s. She was a founder member of the comedy trio No Excuses which produced the legendary piece Know My Place, still available to view on youtube. Mandy was also a founder of North West Disability Arts Forum, later becoming it’s director. She won a Lifetime Achievement Award from Dadafest in 2007. She starred in Kaite O’Reilly’s In Water I’m Weightless for National Theatre of Wales and has had a long career as a speaker, feminist and campaigner for disability rights.

Bea Webster is a deaf actor who trained at the Royal Conservatoire of Scotland. She is an actor, drag artist, writer and speaker on Deaf equality. She is currently in rehearsals with the Royal Shakespeare Company for The Winter’s Tale, and starred in Red Ladder’s Mother Courage and Her Children, and Kaite O’Reilly’s Peeling which toured in the UK last year. Bea is passionate about classical and contemporary texts in English and BSL, has contributed to BBC Social, has hosted several events, and has published a poem in both BSL and English titled Long Lost Lover, about her birthplace of Thailand.

Vici is Artistic Director of Little Cog, writing and touring nationally a number of pieces of work including, Butterfly which was named Best One Person Play by the British Theatre Guide, Another England, Lighthouse and her recent commissions The Wrong Woman Discussions and Siege for ARC Stockton and Home Manchester can still be seen online as part of the Homemaker’s commissions. She is a lifelong feminist and activist, regularly speaking and campaigning on disability rights matters and the role of culture and the arts in equality. She is a founding member of both Disconsortia and We Shall Not Be Removed.

We can’t wait to tell you more about the production – please watch out for regular updates and support us by sharing information about it. Funny Peculiar is a Staging Our Futures Commission supported by Arts Council England, ARC Stockton and will be shared as an internet broadcast at the end of August.

Love Letters To Theatres

July 22, 2020

Kerry Godliman, Genevieve Barr, James Graham and more share memories of the theatres that changed their lives

‘Me and Dad met there!’

Kerry Godliman
Kerry Godliman

Kerry Godliman: If I had to pick just one theatre then it’s the White Bear in Kennington. For the purely romantic reason it’s where I met my husband. We were doing a play called A Picture of Voices and I played his psychiatric doctor. We used to have illicit snogs backstage. It’s a small, black painted backroom of a pub that seats about 50 people. I did a lot of fringe plays in venues like that between leaving drama school and building up paid work. These small venues are crucial to the development of skills and ideas. I’d love a tube map of all the venues I’ve performed at across London. Every car journey passes one of these places filled with memories. But whenever we go past the White Bear in Kennington Park Road I say to our kids: “Me and Dad met there,” and they roll their eyes and say: ‘We know, you tell us every time we pass it!”

‘The plays set my heart racing’

Hannah Khalil.
Hannah Khalil. Photograph: Richard Saker

Hannah Khalil: I was 14 and my best mate Catherine and I were on the hunt for a Saturday job. She lived in Leatherhead and I stayed with her most weekends, so we approached the Thorndike theatre (now Leatherhead theatre) and begged our way into roles as ushers. Every Saturday we would don white shirts and black skirts and my palms would get sweaty at the prospect of instant mental arithmetic for ice cream and programme sales. The plays, however, set my heart racing in a good way. None of the other ushers was interested, instead playing cards during the show. But one person had to sit in and I always volunteered. I saw Hamlet, The Cabinet of Dr Caligari, and Peter Bowles in Present Laughter about a dozen times each. It was fascinating to witness how actors settled into their characters and varied their performances – also how the play changed night after night depending on the audience’s reaction. It was my first job and I probably only had it for a year, but it was in that dark auditorium that I fell in love with theatre.

  • Hannah Khalil is under commission to Shakespeare’s Globe and Chichester Festival theatre. Her plays, A Museum in Baghdad and Sleepwalking, were due to open in London this spring. Read more about Leatherhead theatre.
Theatre Royal Plymouth and its Messenger sculpture, wrapped for the #MissingLiveTheatre campaign.

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Theatre Royal Plymouth and its Messenger sculpture, wrapped for the #MissingLiveTheatre campaign. Photograph: Steven Haywwod/PR

‘I wept and I slept there’

Genevieve Barr.
Genevieve Barr. Photograph: Valéry Hache/AFP via Getty Images

Genevieve Barr: Disability theatre can struggle to find its place. But Theatre Royal Plymouth welcomed it with open arms. More so – they relished it with confidence, graciousness and warm humour. Jack Thorne and Graeae’s The Solid Life of Sugar Water found its home in Plymouth before it went to the Edinburgh festival and won awards, and before the National Theatre deemed it good enough to grace its vaunted stages. In Plymouth, there was a platform laid bare – with a bed, a pair of pyjamas – and subtitles superimposed on the wall. I wept and I slept in my six weeks there. Theatre is about transcending boundaries but it’s also about giving an audience its heart – which epitomises why I fell in love with Plymouth and with this job.

‘Pie-and-a-pint kind of theatre’

James Graham.
James Graham. Photograph: Linda Nylind/The Guardian

James Graham: I didn’t realise how lucky I was, studying drama in Hull, to have Hull Truck on my doorstep. This was the old Spring Street venue – a teeny-tiny former church hall in a bombed-out part of town, which felt more like a bingo hall or working men’s club than a playhouse. Populist, punchy, pie-and-a-pint kind of theatre with local crowds pissing themselves on a Friday night at a play by John Godber or Amanda Whittington. For me, it was a lifetime ambition to have something I wrote on here. I got to perform my monologue, The Man, in the studio space of its spankier new home around the corner, which the City of Culture 2017 properly bedded in. I remember it filled to the rafters for the RSC’s collaboration and mini-residency with (Hull-born) Richard Bean’s raucous The Hypocrite. And its unpretentious populist spirit has mutated to exciting younger companies in the city, from Middle Child to The Roaring Girls. I can’t wait to be back, pint in hand.

‘The start of everything’

Laura Pick
Laura Pick

Laura Pick: I have been fortunate to perform in many theatres. But Theatre Royal Wakefield is special, as I wouldn’t be where I am without its youth programme, Wakefield Youth Music Theatre. When I was 12, my mum sent me along with a friend to audition for the programme. It’s run by a professional team who are able to deliver amazing productions in just a week or two. The theatre trains young people in singing, dancing and acting every week. The pantomime is a special highlight and people travel from afar for it, not least due to the comedy musings of Chris Hannon’s Dame. I was so happy to have my second professional role in Wakefield for Jack and the Beanstalk in 2013. Returning to the place which had provided me with a launchpad felt like a homecoming. Theatre Royal Wakefield is the start of something for many young performers. It was the start of everything for me.

‘Intimate and enchanting’

Jeanefer Jean-Charles
Jeanefer Jean-Charles

Jeanefer Jean-Charles: Before I knew that I would be lucky enough to have a career in theatre, I dreamed of performing on a stage. When my teacher told me about a drama group at the Cockpit theatre in London I instantly joined the intriguingly named Donkey Down Drama Group (why did they call it that?). Rehearsing at the intimate and enchanting Cockpit after school was the highlight of every week, even though the teacher said modern plays would be better for me, as I struggled with my role in a Brontë classic. A bit old-fashioned for me I thought, but how I adored those costumes. Since then I have remained a sucker for a good old costume drama. Now, when lockdown finally finishes, I will have the chance to have black dancers moving in unnatural, 19th-century costumes as they bring to life recently discovered photographs of black Victorians.

Coronavirus: Social Distancing For The Visually Impaired In Italy

July 21, 2020

Italian photographer Stefano Sbrulli documented the difficulties of blind and visually impaired people as they adapt to a world of social distancing.

Italy faced one of the strictest and longest-running Covid-19 lockdowns in Europe.

Those with visual disabilities often need companions or assistance services to go about their day-to-day lives, which can make social distancing a challenge.

Here are some of Sbrulli’s portraits and stories, gathered between March and June.

Changing Places Toilets For Disabled People To Be Compulsory

July 20, 2020

Large accessible toilets for severely disabled people – known as Changing Places – will be made compulsory for new buildings in England from 2021.

Shopping centres, supermarkets, sports and arts venues will be required to include at least one Changing Place, a government spokesman said.

The facilities include hoists, changing benches and space for carers.

Campaigner Zack Kerr said the announcement was “nothing short of life changing”.

A government spokesman said there were more than 1,400 Changing Places toilets in the UK, compared with 140 in 2007, but more were needed to support about 250,000 severely disabled people.

Many disabled people have spoken about restricting their drinking to avoid needing the toilet when they were out, risking dehydration and urinary tract infections.

Other issues include sitting in soiled clothing or dirty nappies until they find a suitable toilet or returned home, and carers having to change a disabled person on a dirty toilet floor.

Helen Whately, Minister for Care, said: “Compulsory Changing Places in new public buildings is a major step in reducing the health inequalities.

“All public spaces should cater for people with disabilities so they don’t have to suffer discomfort, embarrassment, or even injury without access to a Changing Place.”

The government’s announcement will be a major change for building rules in England which now require Changing Places, which are at about 12 sq m, to be designed for new public buildings.

A £30m fund to install Changing Places in existing premises was also announced in March’s Budget.

On Sunday, the Department for Transport and Muscular Dystrophy UK announced a £1.27m fund to install 37 more Changing Places at service stations across England.

It means 87 of England’s 118 service stations will have the facilities in the next few years.

Zack Kerr, who has cerebral palsy, launched a campaign for more Changing Places after a “distressing” journey from his Lancashire home to south Wales three years ago.

“We stopped at three service stations on route along the M62, M6 and M5 but none of them had an accessible changing facility,” he said.

Mr Kerr said when he started his service stations campaign “there were about 10 [Changing Places] in the whole country and none of them were north of Birmingham”.

He said he was “especially pleased” there would be more facilities in northern England.

Zach Anner- CP Comedian

July 20, 2020

 

We found his tips very funny!

Increase In Epilepsy Seizures In Young People During Lockdown

July 20, 2020

A press release:

More seizures, more stress and appointments being cancelled are among the challenges faced by young people with epilepsy during the pandemic, the charity Young Epilepsy has found.

A new study from the charity underlines the difficulties posed by lockdown to the 112,700 young people with epilepsy in the UK – and the charity’s boss fears the impending recession could hit this group hard as they look to enter the job market.

Young people with epilepsy, and their families, have also told the charity that the opportunity to attend appointments remotely is helpful – and Young Epilepsy is urging the NHS to ensure virtual appointments remain an option wherever possible in the future.

Key findings from the study of nearly 300 young people with epilepsy and their parents and carers are:

  • 30% of respondents reported an increase in seizures during lockdown – this may be related to a change in routine and lack of the usual support mechanisms
  • The majority of young people with epilepsy report deteriorations in sleep (72%) and mood (63%) in lockdown – young people with epilepsy are four times more likely than their peers to suffer from mental health issues. Their parents and carers themselves also reported increased stress and anxiety
  • Nearly a quarter (23%) also say that they’ve had clinical procedures or investigations cancelled during lockdown – in addition, 61% are more reluctant to go to hospital, with both issues likely to increase stress if it means a young person’s epilepsy going unmanaged
  • Nearly a quarter (23%) say that they have had trouble getting medication during lockdown – respondents mentioned pharmacies not stocking their regular medication, having to drive further to get the medication or switch between brands or types of medication, while others were frustrated that existing difficulties in obtaining medicines had been exacerbated
  • Most respondents (82%) say they worry that catching coronavirus would impact negatively on the frequency and severity of seizures – fever is a known trigger of seizures in some epilepsies, and one respondent said they had their first seizure in five years while suffering from Covid-19

As Young Epilepsy is aware from its work with young people with epilepsy and their families, this group already felt isolated and faced significant challenges even before the pandemic, including a higher likelihood of unemployment and mental health issues compared with the general population.

Mark Devlin, CEO of Young Epilepsy, said: “Lockdown has exacerbated the complex challenges which children and young people with epilepsy already face, and the pandemic is very likely to entrench some of those disadvantages. For example, just 34% of working-age people with epilepsy are employed, and many have co-existing conditions such as autism which create further barriers to work, meaning that the recession we’re already experiencing is a particularly bleak prospect for the young people we work with.

“We are keen that in the lifting of lockdown and recovery from the pandemic, that the NHS and wider society learns lessons in how to provide the support to help these young people lead the life they want to live. Wider access to remote health appointments is one specific measure, as is the urgent rescheduling of any treatment or appointment postponed due to Covid-19 pressures”.

Susanna Fantoni, who is aged 24, has autism and epilepsy, and is one of Young Epilepsy’s Young Reps, said: “Throughout this time I’ve had to postpone several appointments, and missed blood tests that I’m supposed to get every three months to make sure my phenytoin levels (my main antiepileptic drug) don’t get too high and potentially put me in a coma. My meds, which were finally being ordered automatically by my pharmacy at the right time each month after a year of dose changes which confused everyone but me, are now messed up again with them giving me two months of some and not others.

“It’s these small uncertainties and frustrations that add up and amount to the kind of stress that can cause a sudden peak in seizures. My seizure control has already dropped in the last month and the fear that it could continue to get worse with this ongoing stress is concerning – nobody wants to end up in A&E during a pandemic.”

New resource

In April, Young Epilepsy launched its ground-breaking digital platform, The Channel. This platform, co-produced with young people, was launched because the charity recognised that young people with epilepsy have complex and often poorly met needs – even outside of lockdown – and that there was an appetite for reliable, specialist information provided remotely. Content on The Channel, which has already been accessed by thousands of users, includes advice and guidance on a range of topics from health and wellbeing to the personal and social lives of young people with epilepsy – including staying healthy in lockdown, and issues around Covid-19.

58% Of Disabled People Feel Anxious About The Easing Of Lockdown Rules

July 20, 2020

A press release:

A survey conducted by Disability Horizons has found that nearly 60% of disabled and chronically ill people feel really anxious about the easing of lockdown restrictions, and 49% feel the same about the changes to the shielding guidelines.

We spoke to 267 disabled people and those with health conditions, as well as people living with someone who is disabled or chronically unwell.

  • 58% feel really anxious about the easing of lockdown restrictions

  • 49% feel really anxious about the changes to shielding guidelines.

83% of people who participated in the survey live in England, where the highest number of restrictions have been lifted in the UK so far.

One respondent commented: “I don’t understand how the advice has changed when the situation has not been resolved. No vaccine has yet been found, there is no medication to deal with the virus and the fact that we are having local flare-ups is a sign that it has not gone away.”

Specific concerns included:

  • the changes being “too much too soon”

  • people who have been shielding being forced back to work

  • the Government stopping its help with medication and food

  • other people not adhering to social distancing rules.

One participant said: “It feels like the support is being removed too quickly without a proper structure. It will become very tricky for some people to cope with day-to-day life without having to go out.”

Some more optimistic results

  • 37% and 44% of people say they feel fairly happy but a little apprehensive about the changes to lockdown and shielding

  • Just 3% (9 people) and 6% (17 people) said they are happy with the changes to lockdown and shielding.

Read the full results, additional comments and real-life stories from people affected by the pandemic.

Disability Horizons Shop

In response to the pandemic, we have created two useful products to help disabled people through this difficult time.

For those unable to wear a face mask due to their health condition or disability, our face mask exception card, which comes on a lanyard or badge clip, will help them to avoid being wrongly fined.

With the Government having announced today that face coverings will be compulsory in shops in England from 24th July, and face masks already being mandatory on transport in England and Scotland, this card will be vital for many.

People who fail to comply with the rules could be fined £100. Our card gives people who are genuinely exempt the confidence to shop and travel without fear of retribution.

Our social distancing sash is an immediate, striking signal to help others understand the importance of keeping socially distant from someone who has a disability or health condition, something that can be difficult to communicate from afar.


Large, bold lettering states “KEEP 2M DISTANCE” and it is available in two colours – red with white text, or yellow with black text.

Our sash could be particularly useful if someone is unable to easily or quickly move away from someone who has come too close, and for anyone with a hidden disability or condition that makes them at greater risk if you catch Covid-19 but has no other way to convey that.

YouTuber Helps Deaf People Communicate In Pandemic

July 17, 2020

A YouTuber is teaching people basic sign language to help those with hearing impairments communicate while wearing a face mask during the coronavirus pandemic.

Currently anyone using public transport in England must wear a face covering and from 24 July this will become mandatory in shops and supermarkets.

A new campaign called Please Speak Up has been launched by Hidden Hearing to raise awareness of the difficulties wearing face masks pose for people who rely on lip-reading.

YouTuber Charlie Raine, from Sunderland, has teamed up with the campaign to teach essential sign language online.

Come As You Are Review – Disability Rights And Sexual Needs

July 17, 2020

This is a US remake of a 2013 Belgian comedy, itself based on a BBC documentary about disability rights activist Asta Philpot. Both features transform his true story into a refreshingly non-judgmental road movie in which three young men ditch their families and set off to a brothel in Montreal, hoping to get their “special” needs met.

Come As You Are would have been a worthwhile project even if it had been a shot-for-shot remake, repackaged for the subtitle-averse US market: the more people who get to see three-dimensional representation of people with disabilities, the better. But Erik Linthorst’s script makes improvements, too, including giving juvenile horndog Scotty (Grant Rosenmeyer) a talent for writing raps (sample lyric: “Half-man, half-machine / Not talking ’bout the chair / But what’s in-between / my legs”), and a delayed reveal of one crucial plot point. You may consider yourself the most pitiable speck in the universe, we’re reminded, but there’s always someone out there who’s got it worse.

While the general mood is uplifting, “the right to sex” is an unavoidably fraught topic. Happily any incel-shading-into-misogynist arguments are mostly quashed by the trio’s no-nonsense van driver, Sam (Gabourey Sidibe). She turns up just in time to instil some respect for women, while the dignity of sex workers is also affirmed, albeit only in passing, by Scotty’s mother, Liz (Janeane Garofalo).

All the performances confidently handle the material’s sometimes breakneck tonal shifts, yet still, you couldn’t call Come As You Are perfectly cast, exactly: none of the three main actors has disabilities in real life. The film-makers have explained this as a consequence of their limited time and resources, but it feels like a missed opportunity all the same.

• Come As You Are is available on digital platforms from 17 July.

Coronavirus: The Transparent Masks That Help Deaf People

July 16, 2020

A woman from North Yorkshire has been making transparent face masks to help people who have hearing problems and rely on lip reading to communicate.

Joanne Roberts, from Harrogate, is deaf and said she “struggled” to communicate with people who were wearing masks.

She said: “The [transparent] masks are not just for hard of hearing, they’re for everybody.

“I feel that everybody should be having these masks due to the importance of communication within the human race.”

Sepsis: Amputation ‘Will Not Change Woman’ Who Beat Coronavirus

July 16, 2020

A woman who had a quadruple amputation has said losing her hands and feet does “not change the person I am”.

Caroline Coster caught coronavirus in March but, after initially recovering, quickly ended up in Bedford Hospital with sepsis.

The 58-year-old, from Bedford, almost died twice after being put in a medically-induced coma.

“Being in a coma can best be described as it felt like I was trapped in a video game,” she said.

Her daughter, Hannah, said expecting to say goodbye to her mother had been “unimaginable”.

After recovering from “two horrible weeks” of Covid-19, Mrs Coster was diagnosed with a chest infection and told to go to hospital by her GP.

It was discovered she had developed sepsis, an extreme reaction to infection which causes vital organs to shut down.

Mrs Coster was in the coma for almost a month and doctors twice almost turned off her life-support machine.

Writing on her blog about being in a coma, she said: “When the game was switched off, so was I.

“When the game was switched on, my experience was disembodied white heads coming towards me and telling me ‘Caroline, Caroline, wake up’.”

The mother-of-two eventually began to recover but because doctors had redirected her blood flow to vital organs, her hands and feet had been deprived of blood and turned black.

She told the BBC her hands looked liked those of an “Egyptian mummy”.

“They were black and shrivelled,” she said. “I was so grateful to have my life that it wasn’t a huge jolt to lose those.”

On her blog, she added: “Losing my legs did not change the person that I am.”

Mrs Coster, who is due to start rehabilitation, is hoping to use hand and leg prosthetics but will have to raise money for specialised equipment, including a phone with facial recognition, a bathroom she can use independently and mobility aids.

She has also made plans to register her dog, Duke, as a therapy dog and wants to go back to the hospital with her so people can “see me as a recovered amputee”.

“I’ve never felt ‘why me?’, she said. “I’m just so aware of how fortunate I am.”

 

Isle Of Wight Hospital Emergency Staff Learn Sign Language

July 16, 2020

Emergency department staff at St Mary’s Hospital on the Isle of Wight have been learning sign language to better communicate with a deaf team member.

Emergency department assistant Pippa Abbott usually relies on lip reading and had been having difficulty communicating with colleagues since they began wearing masks.

She said the support of her co-workers had meant she was able to continue doing her job.

Hollyoaks Star Talia Grant Says Black People Treated As ‘Disposable’ On TV

July 16, 2020

Hollyoaks actress Talia Grant has spoken about how the TV industry, “like life in general”, treats black people as being “disposable”.

She told the soap’s Don’t Filter Your Feelings podcast that the media “can capitalise off of us without actually doing the real work behind the scenes”.

Grant, 18, was discussing racism alongside co-stars Trevor A Toussaint and Richard Blackwood.

It comes a month after Rachel Adedeji said she witnessed racism on the soap.

Grant, who plays Brooke on the Channel 4 soap, told the podcast: “It’s amazing that there is a black cast, and there’s all of us, and there is that diversity.

“But I can’t help but feel that sometimes in the industry, and in life in general, they treat black people like we’re disposable.”

She said she had “dealt with difficult situations and micro aggressions” on the soap.

The actress added: “It’s great for us to be in a high up position, but we’re still going to experience it.

“The revolution will not be changed by diversity training, or racism training. It is changed by people changing their attitude and the way that the structural system works.”

Toussaint, who plays Walter, pointed out that there were no senior black staff on the Liverpool set of the soap, which is made by Lime Pictures.

The actor said: “There’s racism in society… TV is no exception to this. There is not one person of colour… who has a position of authority within Lime Pictures. Why is that?

“I think I’ve seen two black directors in all the time I’ve been there and definitely no black producers. Why?”

Lime Pictures said Toussaint’s comments did not apply to its London operation, but acknowledged it needed to do better.

“Hollyoaks celebrates inclusivity on screen and off,” a statement said. “Whilst we believe that is evident on screen, we recognise that we need to do more to increase and support inclusivity behind the camera, especially for black writers, directors and crew.

“We have significantly increased the number of writers of colour working on Hollyoaks, but we need to do more to support black writers in particular.”

‘Extremely grateful’

The company said it had various initiatives in place to increase diversity, including a new writing award and internships.

Grant also said she was “extremely grateful” for the way the soap had dealt with her autism.

“They really made an effort, they all went on training, I felt just accepted and understood. People didn’t view me as the problem,” she said.

The trio also discussed racism and micro-aggressions beyond the broadcasting industry.

‘I’m not scared of losing my job’

Recounting a recurring experience, Toussaint said: “I’m sitting on the Tube and it’s a white person and they look around and there’s only one seat left and it’s the seat next to me and they will look directly at me and they choose to stand.

“If you say to a white person, ‘That is a micro aggression’, they will discount it because they haven’t lived through that time and time and time again.

“Even at this point in my life, someone will say to me, ‘You’re really eloquent, aren’t you?’ And then there’s a pause.”

Toussaint also said: “I have lost jobs because I’ve spoken out and I’m not scared of losing my job. I have been vilified because I’ve spoken out about racism within companies. I’ve been beaten up because I’ve spoken out, I’ve been arrested because I’ve spoken out.”

The podcast was the first in a series of special episodes in which Hollyoaks cast members will discuss racism and their personal experiences in light of the Black Lives Matter movement.

Special Needs Pupils ‘Took Own Lives’ In Kent Amid Covid-19 Pandemic

July 15, 2020

Five children with special educational needs have taken their own lives in Kent since the Covid-19 pandemic began, the county council has confirmed.

It said the deaths should be considered among the “wider health implications” of coronavirus.

The “break in routine” caused by the pandemic “will have had an impact”, said cabinet member for children’s services Sue Chandler.

She said each death was a “tragedy,” but the “numbers are thankfully low”.

Children with special needs plans were among those invited to continue attending school throughout lockdown.

Sarah Hammond, the council’s director of children’s services, told the Guardian: “We worked really, really hard to get parents to send their children in, but we never got above 10%”

She said two or three deaths would normally be expected each year.

‘Disruption to care’

The National Child Mortality Database said there were 25 likely child suicides during the first 56 days of lockdown.

It said the causes were not clear but “restriction to education and other activities, disruption to care and support services, tensions at home and isolation appeared to be contributing factors”.

The children who died in Kent were aged between 13 and 17 and had special needs including autism spectrum disorder and attention deficit hyperactivity disorder.

Tania Tirraoro, a mother of two boys with autism, said lockdown had meant services disabled children relied on had been “stripped away for many, if not most”.

Ms Tirraoro, co-founder of the Special Needs Jungle website, said schools must be given the resources come September to support mental health and that during the summer “local areas must ensure easy access to mental health youth counsellors is urgently ramped up”.

Ms Chandler said the council always focussed on mental health and there had been “intense intervention” to make sure children with “similar characteristics” were being helped.

‘No DSS’ Ruled Unlawful After Mother Rejected By Lettings Agency

July 15, 2020

A disabled single mother who became homeless after being refused the chance to move into a private rented property because she was on benefits has won a landmark court case that ruled she was unlawfully discriminated against.

The case was the first time a court has ruled that the so-called No DSS rule operated by many private landlords – thought to have prevented hundreds of thousands of people from renting homes over the years – breached equality laws.

The court heard that the mother-of-two – referred to in the ruling as Jane – was turned down for several properties by the letting agency because of its long-standing blanket policy of not renting to people in receipt of universal credit or other social security benefits.

In her ruling, Judge Victoria Elizabeth Mark said that “rejecting tenancy applications because the applicant is in receipt of housing benefit was unlawfully indirectly discriminatory on the grounds of sex and disability, contrary to […] the Equality Act 2010”.

The ruling was welcomed by the housing charity Shelter as a “nail in the coffin” of the No DSS rule – an archaic reference to the former Department for Social Security – used by some landlords to describe the vetting of a class of tenants they regard as unsuitable.

Rose Arnall, the Shelter solicitor who fought the case, said: “It finally clarifies that discriminating against people in need of housing benefits is not just morally wrong, it is against the law.”

Although the ruling, made in a virtual hearing on 1 July, does not set a legal precedent, Shelter said it sent a warning to landlords and letting agents that they should end the practice. Five similar cases brought by the charity in recent years were settled out of court in Shelter’s favour.

Jane – who works part-time and is now living in a social home – told the court she was shocked when she was turned down by the letting agent because she had nine years of excellent references from previous landlords and had always paid her rent on time.

She said: “I felt very offended that after all those years, when I have prided myself on paying my rent, paying my bills, being a good tenant, it just meant nothing. When I realised we were going to be homeless because I couldn’t find anywhere, I felt sick to my stomach.”

Rebecca Hilsenrath, the chief executive of the Equality and Human Rights Commission, which helped support the case, said: “No DSS policies by landlords and estate agents clearly discriminate against many women and disabled people, as we saw in Jane’s case. We should never see it in a letting advert again.”

Chris Norris, policy director for the National Residential Landlords Association, said: “No landlord should discriminate against tenants because they are in receipt of benefits. Every tenant’s circumstance is different and so they should be treated on a case-by-case basis based on their ability to sustain a tenancy.”

 

 

 

 

 

How PIP Claimants Are Cheated Out Of Mobility Component Awards For Mental Health

July 14, 2020

With many thanks to Benefits And Work.

PIP claimants with mental health conditions are being cheated out of awards of the mobility component by assessors and decision makers failing to collect evidence and misapplying the law, Benefits and Work can reveal.

The shocking evidence for these tactics comes from our survey of over 1,000 claimants who have applied for the PIP mobility component because of mental health.

A fortnight ago, we published information from the survey which looked at ‘Claiming PIP mobility component on mental health grounds – who gets an award?’

In this article, drawing on the same survey, we cover what PIP claimants get asked about mobility on mental health grounds at their assessment and why they are turned down.

As a result of the information we have gathered, we have updated our guide to PIP claims and reviews. It now contains 8 pages just on this one ‘Going out’ activity.

We have included links to upper tribunal decisions, extracts from DWP guidance and sample answers to ensure that, despite the DWP’s best efforts, Benefits and Work members are able to give the kind of detailed evidence that helps to get the correct award.

There’s also a free, members only, webinar dealing with claiming the PIP mobility component on mental health grounds on 20 July.

Just don’t ask
One way that assessors undermine claims is by simply not asking claimants questions about how their mental health affects their mobility.

I was asked if I could walk 100m unaided. How I had travelled to the assessment centre. I was not asked any question relating to mental health, only physical mobility questions.

How far I could physically walk, how long I could sit. The mental health issues were completely ignored.

This is one of the reasons why Benefits and Work believes it is so important to put as much detail as possible in your PIP2 ‘How your disability affects you’ claim form. Even if the decision maker fails to take it into account, you will have very strong evidence to take to a tribunal showing that you raised the issue of mobility from the outset and that the assessor and decision maker failed to do their jobs properly.

Just don’t listen
Even if relevant questions were asked, there is no guarantee that the answers will actually be reproduced in the medical report.

He asked why I think I need mobility? Asked me if I get breathless or lost I explained I had social anxiety and never use public transport, how I fear germs and any confrontation. Also severe panic attacks. I said I only travel in a car to work with my mum (whom I work with) he didn’t document any of it, his only comment was that she works in a shop with her mum. No comment at all about mobility.

‘Can you plan and navigate a journey?’ No, my son does this. ‘Do you use an app to plan your journey?’ My son does this. (I told him I always use a taxi, always the same company, always with my son, only ever go to doctor and hospital appts usually. None of this appeared in the report).

If I drive and how often, if I have a blue badge and if I use public transport, plan and follow a route. I was not allowed to elaborate on my answers

Said that I can drive a car. I explained that I CAN but I DON’T, but she didn’t listen, and it was reported that I can drive, so I must be mentally ok.

Once again, if you have included the relevant evidence in your claim form then the tribunal will be much more ready to accept that you told the assessor about the difficulties you face, but your answers were not written down.

Say there’s no point
Some claimants were untruthfully told that it was a waste of time hoping to get an award of the mobility component.

When I asked the assessor to consider my mental health, they said unless I was cowering in the corner and unable to speak I wouldn’t get any consideration for mobility on mental health grounds.

If I could order a taxi and meet carer at theatre I didn’t qualify, she said

i was told because i drive a automatic car i wouldnt be allowed the mobility part of my pip claim

This is simply a tactic for discouraging claimants from giving relevant evidence in the first place. Again, if it is already in your PIP2 form and if you understand the criteria for an award, it is a ploy that is unlikely to succeed.

Main grounds for refusal
The main areas our respondents told us were used to undermine their claims were:

  • Driving
  • Using a taxi
  • Getting to the shops, attending GP and hospital appointments
  • Getting to the assessment
  • Walking the dog

In fact, none of these activities are sufficient grounds on their own for lawfully refusing the mobility component.

Driving
The upper tribunal has ruled that a claimant being able to drive is not sufficient grounds for deciding that they are not entitled to the mobility component on mental health grounds.

The decision maker must look at your ability to walk, use public transport and drive and then come to a conclusion about whether you can reasonably be said to be able to follow a route.

In addition, there are many other issues that should be considered in relation to driving, such as whether you can reliably follow unfamiliar routes and whether you need someone else in the car with you.

But, some assessors – supported by decision makers – choose to unlawfully regard the possession of a driving licence as enough to rule out an award.

Said I had a driving license that I had used as ID

Has a driving licence

Drives a car.

Drives car to go shopping

asked if I had a car? I said yes and she said if you can drive you wont be awarded the mobilty part !!

because I drove a car. My ptsd was dismissed completely even though I had supporting letters

yes – they said that “I could drive a car if I wanted to” (real lawful answer is “no, I can’t drive at all because my driving license was revoked under medical grounds.. Road Traffic Act )

Apparently if I can drive a car then nothing else is impaired as it takes concentration to drive even though I only drive local

My demeanour was observed in the waiting area & in the assessment room, I did not appear overly anxious (due to the effects of the temporary essential medication which made me feel euphoric & uninhibited). Can drive independently locally, within 2 miles, to my mum’s or my friend’s house, as I cannot go shopping without a companion. Assessor said driving requires lots of cognitive skills so I was ok!!

Because I can drive a car even tho I can’t now as my health has deteriorated

Said i drive myself and work full time ,neither is true .what is true is i own a car that unable to use most of time and have lifts from husband or use taxi. not been to work for almost a year.

was asked had I passed my driving test. I have but it was back in1988 when I was young and healthy.

Taxis
Being able to use a taxi should not disqualify anyone from an award of the mobility component on its own, especially if the reason you travel by taxi is that you cannot plan or follow a route alone. Without asking about this, the evidence is largely worthless.

But that doesn’t stop the DWP relying on it.

She can plan a journey and can get to the shops with her friend using a taxi and is able to attend her psychiatric appointments by taxi without being accompanied (I had said I do this and used the same taxi for years and the same driver – all was disregarded)

Claimed I used taxis to go to appointments/classes so could ‘plan and make a journey unaided’. I didn’t say this and said carers took me everywhere.

Assessor kept saying I could get in a taxi. I was adamant, not with a male driver.

Getting to the shops, attending GP and hospital appointments
A common method of refusing an award is to look at whether the claimant can get to vital appointments, such as GP and hospital, or whether you ever manage to get to the shops and refuse on those grounds.

Any other regular or occasional journeys will also be pounced upon.

This is clearly unlawful as it takes no account of unfamiliar journeys, reliability, or a range of other issues.

Reason given for no mobility PIP award was ‘is able to travel by self to college‘, This reason failed to take into account that the claimant had been travel trained to do this journey over a long period of time and with the support of parents who remained on call should a problem exist on the journey. Also, what was said at the assessment was not recorded on paper that the claimant could not do journeys to new places by herself because of all the difficulties she has.

because i could go to doctors appointments when accompanied they said i could go out if necessary even though they agreed i find it very stressful and do not go out any other time.

Drives. Goes to GP

I can attend drs and hospital app

Yes said i was able to go to my hairdressers who I have known for over 25 years.

Assessor and DWP said I was able to go out of my home 3 times a week. They failed to mention what I had told them, and my carer told them (who was also present at the assessment) that I have to be prompted to go out, and picked up by car from my home and always supported when out and about also, by my relative carer, due to my autism, anxiety etc. causing me significant communication problems, so much so that the police and social services had been involved and I had to move home because of bullying.

was asked if I could attend drs or hospital app. Wasnt given a chance to explain how I would be in the bed for the following few days recovering.

Getting to the assessment
Being able to attend a face-to-face assessment – back in the days when they still happened – or your behaviour when you are there is sufficient for some assessors to decide that you do not have any problems with planning and following a route.

In one case, the claimant’s demeanour during a telephone assessment was sufficient to rule out the mobility component.

In fact, such a judgement is simply a snapshot of the claimant on the day. Unless it is supported by evidence of your being able to plan and follow routes on other occasions and in other circumstances, it should be of very limited weight.

He got here today. Even though I needed a lift from my brother as I’m unable to use public transport due to my mental health.

Stated attendance at face to face was evidence enough to say no difficulties with mobilising and coping with travel plans etc

I was ‘observed’ to have left the assessment centre without any mobility issue, and showed no discomfort during the assessment

Although she was tense and withdrawn, she was able to complete the assessment and there was no evidence of overwhelming psychological distress observed. Also the anxiety symptoms reported are not so severe as to be overwhelming in nature. Furthermore she does not have a cognitive or sensory condition that would restrict her from undertaking this activity.

did not show any signs of significant anxiety or distress. No issues with memory or concentration no verbal support from relative I therefore decide you can plan and follow route unaided

only that i could walk from the waiting room to the assessment room unaided and that i was alone, no companion and i could boil a kettle without being supervised

On majority of days felt that I did not need any help as did not show signs of distress,depression, anxiety or fatigue during telephone assessment, and was able to answer all relevant questions.

Walking the dog
Being able to walk a dog was a surprisingly common reason for refusing an award.

But it was clear from the responses that many claimants walked their dog at a time when they wouldn’t encounter other people. Guidance to health assessors explains that if you can only start a journey at night this should not count as being able to undertake a journey.

As with other reasons for refusal, simply being able to walk a dog is entirely inadequate. Walking a dog is unlikely, for example, to involve unfamiliar routes or planning.

Initially I was told that I go out every day using public transport, which could not be further from the truth. I requested the assessment report which clearly stated that I could not do this. After asking for a mandatory reconsideration I was then told that because I take my dog out around my home at 4 o’clock in the mornings, this constitutes planning and following a journey, even though this was the case at my previous assessment when I was awarded lower rate mobility.

I was asked if I go out at all, so said I walk the dog at 11pm when there is no one around and it is quiet. Because I could do this, I wasn’t given mobility.

Can drive and walk the dog when I’m not suffering from depression

I was able to walk round the block with my dog every day which i dont and did not say i did.

Be prepared
Your right to an award of the mobility component on mental health grounds is based on legal criteria.

The job of the assessor is to collect detailed evidence that relates to those criteria.

The job of the decision maker is to apply the criteria to all the evidence.

Clearly in many cases this isn’t what happens. The assessor collects insufficient evidence and the decision maker then makes an unlawful decision based on that evidence.

We hope that this article, and our PIP guide if you are a Benefits and Work member, will help you give the kind of evidence that will lead to the correct award – even if you have to appeal to a tribunal to get it.

Glove To Translate Sign Language Into Speech Developed By UCLA

July 14, 2020

Harvey Price Is In Intensive Care

July 13, 2020

Same Difference wishes Harvey and Katie Price all the very best, now more than ever.

Coronavirus: Disabled Job Hunters ‘Should Not Be Forgotten’

July 13, 2020

Although lockdown restrictions are beginning to ease, its effects, particularly on employment could be felt for years to come.

The number of workers on UK payrolls dropped by more than 600,000 between March and May, meaning more people looking for work, while the number of job vacancies fell by 342,000.

And for people who have disabilities, finding a job can already be tough.

Sherron Chambers, 52, from Handsworth, Birmingham, worked as a nurse and midwife for 27 years.

After being diagnosed with multiple sclerosis (MS) in 2002, she was able to keep working until 2010, before moving into desk-based jobs until 2015, when she said a lack of support made it difficult to continue.

“People would phone up, not reading my CV that says I need a desk-based role, but they were looking at my qualifications,” Ms Chambers said.

“They automatically assume I want to work in a hospital.

“As soon as I say MS, the call went dead.”

She said job hunting during the pandemic had been “difficult”, but has now secured three interviews while being supported by the BID Services charity, who she was referred to by the job centre.

“We have weekly zoom meetings [with BID], talk through our problems and talk about what we need,” she said.

“They help us with our Curriculum Vitaes, give advice regarding literature, podcasts and YouTube and do mock interviews.”

Government figures show before the coronavirus outbreak 4.4 million disabled people were in employment, but were more than twice as likely to be unemployed as non-disabled people, according to disability charity Scope.

It said it feared the so-called disability employment gap could get worse.

Following the Chancellor’s announcement of measures to protect jobs, Scope said it was “disappointing” Rishi Sunak did not directly address the needs of disabled people

“Disabled people have been amongst the hardest hit during the coronavirus crisis and life looks set to get even harder, with a looming recession and rising unemployment,” said Head of Policy and Campaigns, Ceri Smith.

The Organisation for Economic Co-operation and Development estimates UK unemployment will reach “record highs” of up to 11.7% by the end of 2020.

“Many disabled people are already locked out of work or struggle to stay in work because of inflexible working practices,” Ms Smith said.

“Government must not forget disabled people. The initiatives announced need to work and be accessible for disabled people.”

Charity BID Services, which supports disabled people in Birmingham, said with job centres and libraries closed during the pandemic, and some support systems unavailable, people with disabilities have faced multiple barriers in finding employment, education or training.

Its support project called Pure, delivered with Birmingham City Council and part-funded by the European Social Fund, has so far helped 150 people seeking employment.

One of them is Robert Barton, from Birmingham, who previously worked as a primary school teacher.

In 2014 he suffered a traumatic brain injury when he was hit by falling rocks while walking with a friend on holiday in Corsica.

As well as losing hearing in one ear and suffering issues with his speech, he has prosopagnosia, or face blindness, and can no longer recognise people’s faces, not even those of his parents or girlfriend.

He has been volunteering since he had to give up his job, currently as a tutor, although this has also been put on hold during lockdown.

“I love teaching and I was really good at it, I still am, I just can’t recognise the children,” he said.

“I volunteer with small groups of two, sometimes three, pupils and when I am with them, I can keep track on who is who.”

He has been looking for paid employment and has applied for work as a teaching assistant and has also been looking at roles in waste management.

But the pandemic has had an unexpected benefit for Robert while job hunting.

“I have dysphasia in my speech and find it quite hard sometimes to find the appropriate words to use,” he said.

“I find it useful having an interview through the computer because, in the background off screen, I can have key words written up and make sure to say them.”

He also paid tribute to the BID charity for helped him find and apply for jobs, although he has so far been unsuccessful.

“I’m not great at doing things quickly, everything takes me longer now,” he said.

“We found these jobs and as soon as we had finished our meeting I started applying.”

Despite the challenges, he said he was positive about his future.

“I feel it is the right time for me to find a job. I can do this. Unfortunately the pandemic got in the way, but I am very optimistic.

“It will be more difficult for me to find a job, but I very much feel I can.”

Casualty: Writing Jade’s Story

July 13, 2020

In this week’s episode of Casualty (Saturday 11th July) nurse Jade Lovall (played by Gabriella Leon) meets her birth mother and finally uncovers the truth behind her past. Co-writers Charlie Swinbourne and Sophie Woolley were both part of our first Writers’ Access Group. We spoke to them to find out more about how being part of the group led to the opportunity to write the episode, and how it was created to authentically tell the story of the show’s first regular deaf character.

What was the journey to the point of being given the chance to write this episode of Casualty? 

Charlie: I’d spent over a decade creating dramas, comedies and documentaries with deaf actors and contributors, in sign language, having a lot of different experiences of telling different types of stories, always with deaf people at their heart.

Becoming part of the BBC Writersroom’s Writers’ Access Group gave me the chance to meet mainstream producers for the first time, share my work with them and take steps into making programmes for a wider audience.

It was through the group that both Sophie Woolley and I met Loretta Preece, who worked for Doctors at the time. She later moved to Casualty and contacted us about discussing an episode about the character of Jade. We went down to Cardiff and spent a day discussing the character and potential stories, including having a tour of the set! It was a really positive, encouraging day, and we were delighted to be commissioned to co-write the episode.

Sophie: I’ve written for stage and BBC radio drama and sitcom. I took part in the BBC Writersroom’s Writers’ Access Group. I wrote a pitch for another show which led to being asked to pitch and then write for Casualty with Charlie. We went to Cardiff for the first two meetings and had a set visit.

Once the opportunity to write for Casualty came about, what was the process of devising and pitching this episode? Who did you work with? How long was that process?

Charlie: During the initial day we spent in Cardiff, we started sketching out stories, sharing a lot of ideas and thoughts. We then went away and wrote a treatment for the episode, before then going on to write a scene by scene document.

Along the way a lot of things changed as we got feedback from the team and made changes, big and small. It was a very collaborative process. I remember we went back to Cardiff again a couple of months later for another meeting and our sign language interpreter commented that the stories seemed completely different than the first time! We were tweaking the stories all the time as we went through different drafts and moved on to writing the scripts.

Sophie: I worked with Charlie and the script editor, the medical editor, and the producers. We also met with the wider production team including the people designing the sound, because the sound will be from Jades POV. When we got notes from the medical editor, it was from all of the medical experts employed by the show. So each section of medicine in the show, is checked. The medical aspect of the writing was as creative and exciting as the emotional and character storylines.

What help are you given in terms of story documents, character profiles etc? Do you work with a Story Producer, Script Editor? Who supports you?

We were sent documents with all the storylines for the episodes around ours, so we had a sense of what came before our episode and what was going to come after it. We also had a series bible, character biographies and a floorplan of the set!

We were directly working with our Script Editor, who’d collate the responses from the team so that we would get one set of notes for each draft, which we’d then usually talk about and discuss before working on our next draft. We also had a lot of input from the producer, Dafydd Llewelyn, throughout the process.

Is there a structure to a Casualty episode in terms of A, B and C storylines, guest stories and serial stories for the show’s permanent cast? Was this new to you?

Charlie: When you’re writing a Casualty episode, it is a mixture of continuing stories about the show’s permanent cast which are combined with your own guest stories and characters to create your episode.

There are A, B and C storylines, as well as other story beats that writers will need to include! I was aware of this way of working through my previous experiences, but each show is different – the team gave us great guidance and support with this.

Sophie: I hadn’t used A B and C story lines in my previous theatre and radio work so that was all new and very exciting!

Can you set the scene in terms of Jade’s story to this point for anyone who hasn’t been watching?

Jade was in foster care at a young age and has put off meeting her birth mother. She doesn’t know why she was given up as a child and is scared of being rejected. This episode shows her meeting her birth mother, who she knows very little about.

Recently, she’s read a short letter from her birth mother and met her social worker, and this has led her to make the decision to meet her. When she does meet her, the situation is different to what she’d thought…

This episode takes Jade into new territory in terms of dealing with her history, her sense of her self, and her deafness. From now on the audience will know her in a deeper way than ever before.

At what point in the development of the script did you include elements like the audio giving the audience a sense of Jade’s hearing loss and her world, how it changes with and without hearing aids and in different environments? Are these written into the script?

Sophie: I thought about it from the start. Yes it was in the script. We spoke to the actor Gabriella Leon at the start as well, to get her experience. We all have different types of deafness. I have acquired deafness. I went totally deaf slowly, over 20 years, I used captioners and BSL interpreters to access my work and a few years ago I got a cochlear implant. This means I have experienced many types of deafness. Each time I lost more hearing, The world was suddenly changed again. 

Charlie: This was a part of the script from the earliest stages. We were always including what Jade’s soundscape might be like as she went through her journey in the episode, drawing upon our conversations in Cardiff, which Gabriella Leon, who plays Jade, was a big part of.

We also made it clear which words Jade might miss, as people spoke to her. And of course, there are points when she’s not wearing her hearing aids at all, so that was included.

The descriptions of the sound became a bigger part of our thinking once the team started planning how the audio would be recorded and would play out on screen, giving the audience a true sense of what Jade hears.

How important was it to show Jade’s mother being Deaf (ie using sign language) and the distinction with Jade’s use of hearing aids?

Sophie: Deaf people are all different. And we are all brought up differently. This impacts the way we communicate and our confidence in the world and in life.

Charlie: We wanted to explore deafness within a family dynamic, to show that the thing people take for granted – that you can talk to your mother, or daughter – might be a bit more complicated. This went beyond just Jade and her mother, but also reached her grandmother too. We see three generations of a family in this episode and how deafness has touched each of their lives in different ways.

What challenges did this bring for production? Did you work with the sound department to explain your intentions?

Charlie: We did quite a lot of thinking about how the sound would work as the process went on, and we had a meeting in Cardiff where we all decided that the audience would hear what Jade hears.

We talked with the sound team that day, got a sense of what they could do, and gave them a sense of our vision. A lot more work went into it as the director John Maidens (who is also deaf) became involved and started planning his vision for the episode.

Having John as director was brilliant because he completely got the story, knew from experience what we were getting at. With two deaf actors as well, the episode was made with deaf people in many of the key creative positions, which I believe is a real first and something I hope the industry sees as a real example to follow.

What do you hope people will take away from the episode?

Sophie: A deeper understandng of how brilliant Nurse Jade is. I hope people will take away understanding about the complexity of the different deaf experiences. We are all different.

Charlie: I hope the audience really enjoy it, that they’re moved by the story, and get to know Jade in a different way to before. I also hope that long after they’ve watched it, a sense of deaf people’s lives and experiences stay with them.

For many deaf people, difficulties with communicating with their own families, and sometimes the feeling of their deafness not being fully accepted by those close to them, is a big part of their lives. Knowing that from real-life experience definitely helped to inspire elements of this story. Hopefully deaf people will feel their lives are reflected in this episode, and non-deaf people get to see a side of life they might never have thought about before.

What have you got coming up next?

Sophie: I’ve been doing some more TV writing (under wraps for now!). I also have a writer bursary at Wellcome Collection, a medical archive to research there this summer.

Charlie: The Eastenders storyline I pitched is still on screen, I’ve also written a script for a new CBBC series, and I’m currently writing a 45 minute drama for BBC One. As well as that, I’m writing a short lockdown comedy featuring two grumpy old deaf men who are trying to talk to one another on Facetime! The current situation has delayed some of my work but I’m still writing every day and I’m hoping to keep learning and developing as time goes on. The last year has been really transformative for me and I’m really excited about what the future holds.

Watch Jade’s story on Casualty on BBC One on Saturday 11th July at 8.25pm and on BBC iPlayer