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YouTuber Adalia Rose Dies Aged 15 From Genetic Condition

January 17, 2022

YouTuber Adalia Rose has died at the age of 15 from a rare genetic condition.

The US teenager was diagnosed with Hutchinson-Gilford progeria, also known as Benjamin Button disease, when she was three months old.

It’s a rare fatal condition which causes problems with growth and features which resemble early ageing.

In an Instagram post Adalia’s family said she “touched millions of people and left the biggest imprint”.

Adalia, from Texas, had almost three million YouTube subscribers and shared different tutorials, as well what it was like to live with the condition.

“She came into it quietly and left quietly, but her life was far from it,” said her family in the post.

“She is no longer in pain and is now dancing away to all the music she loves. I really wish this wasn’t our reality but unfortunately it is.

“We want to say thank you to everyone that loved and supported her. Thank you to all her doctors and nurses that worked for YEARS to keep her healthy.”

About 500 children around the world are affected by Hutchinson-Gilford progeria. People with the condition have an average life expectancy of 13 years.

In a 2018 interview her mum Natalia Pallante said: “When Adalia was born, I think it was she was like a month old and [the doctors] weren’t happy with her growth,”.

“My favourite thing about being her mom is just watching her grow and seeing just how different she is from everyone.

“Adalia has changed my life completely,” she added. “It’s not like I was hateful but I wasn’t nice to myself. I wasn’t thankful. I didn’t realise what life was until she was born.”

Paralympian Will Perry Praises ‘Fantastic’ Support After Dwarfism Abuse

January 17, 2022

A Paralympic swimmer said he had had a “fantastic” reaction since speaking out about public abuse he receives because of his dwarfism.

Will Perry, who swam for ParalympicsGB in the S6 100m freestyle at Tokyo 2020, said he was “sick to death” of being laughed at because of his disability.

Speaking on BBC Breakfast, he said the reaction to his comments had shown “how many people are standing by me”.

“It is a really good reminder this is a minority of the public,” he said.

Perry, from Northamptonshire, has a common form of dwarfism called achondroplasia.

He had called for people to challenge those who filmed him or laughed at him in the street.

On Friday he said: “The really fantastic thing is the reaction I got, knowing how people are standing by me.”

The 21-year-old said, outside of the Paralympic Games, disabled people were “pretty irrelevant,” so it had been “great to see so many people backing my cause, messaging me in support, saying they will call others out”.

He said he had been contacted by parents of children with the same condition, concerned they would receive similar abuse.

“All I can say at the moment is there is nothing we can do,” he said. “I’m trying my hardest to fight it, but we’ve got to stand together.

“I’ve been brought up to take it on the chin; that you can’t change it, you’ve got to be strong.

“I want to be strong, but I shouldn’t have to be.

“When the whole public gets behind this people will realise it is just not acceptable.”

MPs To Go Ahead With Publishing Secret Report

January 17, 2022

With many thanks to Benefits And Work.

 

The commons work and pensions committee has confirmed it is going ahead with its plan to obtain a copy of a secret disability benefits report and publish it.

Regular readers will know that the DWP is fighting to keep secret a report entitled ‘The uses of health and disability benefits’ which deals in part with the unmet needs of benefits claimants.

The work and pensions committee had given the DWP a deadline of 11 January to publish the report themselves.

However, on 10 January the committee received yet another blunt refusal from Therese Coffey, secretary of state for work and pensions:

“As I have written to the Committee before and re-stated at the Committee hearing last month, my Department is currently considering a range of policy options, drawing on wide evidence, research and analysis, and protecting a private space for policy development is important. I have no intention to publish this research at present.”

The committee have now written to the authors of the report, NatCen, ordering it to provide a copy of the report to the committee by Thursday 27 January, for publication.

Rt Hon Stephen Timms MP, Chair of the Work and Pensions Committee, said:

“After repeated obstruction from the Secretary of State to keep from public view a piece of work that falls within the Government’s own protocol for publication, we have reached the end of the road. We would have much rather the DWP had done the right thing and published the report itself, so it is with regret that we must now take the highly unusual step of using our parliamentary powers to obtain a copy from NatCen and publish it ourselves. We have been forced to do this to ensure that the reality of disabled people’s experiences of the benefits system can see the light of day.”

However, the DWP has admitted that the report was altered before publication and a whistle blower has said that this was in order to reduce the number of references to claimants’ unmet needs. The final report is, therefore, unlikely to fully reflect the reality of disabled people’s experiences of the benefits system.

Benefits and Work is continuing with our Freedom of Information request for a copy of the unaltered report.

You can read the full account from the work and pensions committee on the parliament website.

Letter To My MP About No 10 Drinks Party

January 14, 2022

Following on from Rory Kinnear’s heartbreaking article published in the post above, I thought I would share the letter I recently wrote to my MP about ‘that’ drinks party.

I am a physically disabled woman. When Corona hit in 2020, I locked down completely. I lost five months of physiotherapy between April 2020 and January 2021 across two lockdowns as the committed, caring health professionals who have provided me with lifesaving physiotherapy since birth also locked down completely, putting the health of their patients above everything else. I believe I lost physical abilities as a direct result of this, which are only now slowly returning, thankfully, after a year of continuous appointments.

On a personal level, I stopped visiting my father who is a pensioner and also locked down completely, requesting me not to even enter his home, in which he lives alone, for the first three months of lockdown for our mutual protection. I will never get that time back in either area of my life.

I kept the rules made by Mr Johnson for the protection of myself and those around me. For the same reasons, I would do so again but the least I expect is that the person who creates the rules and repeatedly asks me to keep them will lead by example.

Sadly Mr Johnson forgot the sacrifices made by the ordinary people in the country he leads. His moment of madness on the evening of May 20th, 2020 leaves me heartbroken at the thought of the sacrifices I made over lockdown.

I thought Mr Johnson did his best in a difficult situation for the safety of the country and so over lockdown, I positively changed my opinion of him. Now, however, it is time for him to make a public apology in an 8pm news conference, similar to the one in which he announced the very rules he went on to break, closely followed by an announcement of his resignation.

Readers, you can write to yours using contact details listed here.

Rory Kinnear: On The Day Of No 10’s Lockdown Party, I Buried My Sister

January 14, 2022

Without wishing to sound like an episode of Poirot, I remember well what I was doing on the evening of 20 May 2020, when more than 100 people were invited to a BYOB party in the prime minister’s garden, “to make the most of the lovely weather”. While they recovered from an “exceptionally busy period” with, it might be presumed, laughter, companionship and their own bottles of wine, I was at my house. Like them, I, too, had a glass of wine, although I had drunk it by myself. I had then gone for a walk around my block where I had bumped into a friend out on his “daily permitted exercise”. We spoke a little, at a distance of more than two metres. He offered his condolences. I thanked him and returned home, alone. 20 May 2020 was the day I buried my sister.

Like those assembled with their bottles in Downing Street, I, too, had broken the government’s existing guidelines, implemented to mitigate the spread of Covid-19, in a familiar garden. After my sister Karina’s funeral, I had gone to my mother’s house. It was a baking hot day and, while the circumstances didn’t really allow me to “make the most of the lovely weather”, the sunshine did permit me and my other sister, Kirsty, to sit in our mum’s garden, at the state-appointed distance from each other, and recall the many joys, as well as strains, that Karina’s life had brought. There were three of us in the garden, from three separate households, one more than was permitted. It might not have been exactly to the letter of the law, but we reckoned it was the least our grief would permit.https://d15d91a70a495baf0e37df64cd6cc748.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Luckily we could remain physically, if not emotionally, distanced from each other. Karina had died of Covid and we felt we should take the best precautions possible to prevent the disease’s spread. We sat at three different points in the garden, on familiar garden furniture in the most unfamiliar of circumstances. We didn’t hug, didn’t allow ourselves any of the consolation of physical touch: we thought it would be safer that way. Physical contact was, after all, what they had instructed us to avoid. For 48 years my mother had fought to keep her disabled daughter happy and alive. For 48 years, whenever Karina had been ill, my mother had slept in hospital chairs for weeks on end, gone days without sleep, sacrificed her own health for Karina’s wellbeing, driven by a love that only a parent can know. And now Karina was dead. And we couldn’t hug each other. It was bleak, yes, but then it was a time of incomparable global uncertainty. An unparalleled, unifying swathe of sadness had devoured us all. Pain like ours was tearing through families the world over. So, in some ways, it felt like we were all in it together.My sister died of coronavirus. She needed care, but her life was not disposableRory Kinnear

A couple of hours earlier, we had driven in separate cars to the cemetery in which my father is buried. Two gravediggers stood by a fence as we watched six strangers, wearing masks and latex gloves, lower Karina’s coffin into a freshly dug plot adjacent to his. A priest, somewhat concealed behind another gravestone, invited me to speak. I attempted to hold back tears as I gave thanks for the extraordinary role Karina had played in our family. A tinny speaker played Abba’s Thank You for the Music, the lyrics a little drowned out by the rustle of the willow tree above. We threw some earth on her coffin, got back in our separate cars and went back to my mum’s for a slice of chocolate cake on disposable plates. I had brought my own. Our story was just one of thousands similar happening up and down the country. We were, we consoled ourselves again, all in it together.Advertisement

That evening, as I walked alone, the streets were piercingly quiet. How sad it all is, I thought, how devastatingly sad. And yet, what consolation there is in seeing and hearing these manifest absences; silences that speak of self-denial and mutual respect. The sepulchral pallor that my corner of London had been bathed in was the result of a shared commitment to rules, designed by them,to keep us, our loved ones and our wider society safe. I walked past my neighbours’ houses; friends numbed by screentime and family dynamics, unsure how long this would all last, no access to society beyond their phones, windows open to mitigate against that lovely, lovely weather. I couldn’t help but feel grateful that my community was taking the deaths of people such as my sister as seriously and profoundly as I was. Their confinement spoke of a silent but wholehearted sympathy for families such as mine. They knew, they felt too, that we were all in it together.

Well, not all of us, it turns out. Not them.

Just under two miles separates my corner of London from the garden of Downing Street. I am, today, haunted by the tinkling of those glasses there on that sun-drenched night, the echoing of their thin laughter, the stifled chuckles as they practised their imagined denials and, most perniciously, the leadership that encouraged it to happen. Their actions feel like direct assaults in the face of my family’s, and all of our shared national, tragedy. To me, and I’m sure many others, the revelations of the manifest and repeated failures of those in power to understand, empathise or show solidarity with what the people of this country experienced during that time have released from the body politic a stench so toxic that I can’t see how they will be able to put it back in the bottle, no matter how desperately they try. They can’t point the finger anywhere else this time, can they? After all, they brought the bottle themselves.

Lennie James: Walking Dead Star Demands Debate Over Gay And Disability Roles

January 13, 2022

The Walking Dead star Lennie James has said there needs to be much more of a “conversation” about the casting of roles.

Amid a growing clamour for actors to have lived experience of the characters they are playing, he called for debate especially “in areas where the authenticity has been underserved”.

The Line of Duty actor is currently in rehearsals for A Number, a psychological thriller at the Old Vic theatre in London, opposite I May Destroy You’s Paapa Essiedu.

James told the BBC: “Where gay actors have not been given the opportunity to play gay parts, or disabled actors have not even been considered for the opportunity to play disabled parts, in that situation then I would 100% be part of the conversation of saying, why not? That absolutely should change.”

But he insisted he would “challenge” the idea that certain roles must be reserved for particular actors to ensure their performance is authentic.

The Save Me actor and writer said the casting of any role had to be “on a case by case basis. I don’t believe in blanket statements… because then the role of the actor slightly changes and is slightly different to the one I hope and pray that it is”.

His comments come after Dame Maureen Lipman questioned the casting of the non-Jewish actor Dame Helen Mirren as the former Israeli Prime Minister Golda Meir in an forthcoming film.

“The Jewishness of the character is so integral,” Dame Maureen told The Jewish Chronicle.

Last year the Bafta-winning writer Russell T Davies, talking about his Channel 4 Aids drama It’s a Sin, which only featured gay actors in gay roles, told the Radio Times: “You wouldn’t cast someone able-bodied and put them in a wheelchair, you wouldn’t black someone up. Authenticity is leading us to joyous places.”

Marlee Matlin, the only deaf actor to win an Oscar for the 1986 drama Children of a Lesser God, has also spoken out on behalf of deaf actors.

“Enough is enough,” she told The Guardian last year. “Deaf is not a costume. It’s not authentic and insults the community that you’re portraying. Because we exist, we deaf actors.”

But other actors have called for a more nuanced approach, believing it is part of the actor’s job to inhabit a totally different character.

The multi-award winning actress Cate Blanchett has said: “I will fight to the death for the right to suspend disbelief and play roles beyond my experience.”

And speaking to Radio 4’s World at One following her comments about Dame Helen’s casting, Dame Maureen herself also acknowledged it was a “complex” argument.

“You simply would rule out the whole skill and craft of acting if you cast narrowly,” she said, before adding: “I am not someone who believes Shrek should be green.”

James, 56, admitted he was “scared witless” by his latest role in A Number, a play about the ethics of human cloning.

He is returning to the stage after a 16-year absence.

Appearing alongside him will be Essiedu, 31, who was the first black actor to play Hamlet for the Royal Shakespeare Company in 2016.

The pair have known each other since Essiedu was chosen as one of Bafta’s Breakthrough Brits in 2018. Recipients are given mentors in the industry.

“They ask you, ‘Who do you want to meet?’ You can meet Steven Spielberg. I was like, ‘I’ll meet Lennie James,'” laughs Essiedu, who cites James as an early career inspiration.

With James based in Austin, Texas, filming Fear the Walking Dead, and Essiedu in London, the pair kept in touch online, via email and Zoom.

“The first time we actually met in person was on the first day of rehearsals (for A Number),” says Essiedu.

Unfortunately, the experience was “profoundly underwhelming” thanks to Covid, he explains.

“I think we bumped fists or even elbows.”

In A Number, James plays a father, with Essiedu playing his three sons, two of whom are clones of the first.

Caryl Churchill wrote the play in 2002. The first production, at the Royal Court Theatre in London, starred Michael Gambon and Daniel Craig, well before he went on to play James Bond.

The Guardian’s Lyn Gardner described it as an “engrossing spectacle”, adding: “The success of a disturbing evening lies in Churchill’s ability to raise big moral issues through the interstices of close human encounters.”

But, she noted, “Although the play is in part an attack on patriarchy, it doesn’t supply enough hard information to resolve the issue of whether character is determined by genetic or social factors.”

In 1996, scientists had made history by creating Dolly the Sheep, the world’s first mammal cloned from an adult cell.

Researchers hoped the scientific experiment would help to treat debilitating diseases, but critics were worried it opened the door to human cloning, designer babies and a dystopian future.

“The version we are doing is set in the here and now, where cloning is a possibility, a bit like it is now,” explains James.

After Dolly’s birth, countries across the globe began to adopt their own laws regarding human cloning. Although the UK allows the use of cloned human embryos for therapeutic purposes, it has banned reproductive cloning which would aim to create a new-born baby that is genetically identical to another human being.

Secret revealed?

“If they hadn’t put the restrictions on the process that they put on when Dolly the Sheep was done, who knows what situation we would be in 20 years later?” asks James.

“And this play supposes a future on from that and that’s where we’ve set it. So we’re not going to be dressed in white space suits and be talking to the walls.”

Essiedu adds: “It’s not a sci-fi play about Paapa Essiedu trying to copy himself and Lennie James watching that. It’s about personal relationships.”

James says while cloning is the “springboard” for the play, A Number is primarily about “the relationship between fathers and sons.”

His return to the UK stage also means an opportunity to catch up with old colleagues.

James, who played Gates, the embattled DCI Tony Gates from the first series of Line of Duty, says when he comes home, he and his former co-stars Adrian Dunbar, Martin Compson and Vicky McClure will “all go and grab a curry together.”

He is also still in touch with the show’s creator Jed Mercurio, too. The sixth series was billed as the final one, but could the show return?

“I think there’s another season to come,” says James. “But if I’ve just let out a secret, I’ll own it.”

A Number is at the Old Vic from 24 January until 19 March.

Strictly: Sign Language Interpreter To Be Projected On To Big Screens At Live Shows

January 12, 2022

She was the first deaf contestant and winner of Strictly Come Dancing, and now Rose Ayling-Ellis is set to make history again by taking part in the UK’s first arena touring show that will have a British Sign Language interpreter at every performance.

For each of the 33 shows of the forthcoming Strictly Live UK tour, producers are providing a registered interpreter who will appear on two large screens either side of the stage, meaning deaf people can sit almost anywhere in the venues to enjoy the event.

After winning the Strictly glitterball trophy, EastEnders actor Ayling-Ellis said she hoped her achievement would help with “breaking the barriers” for deaf people.Advertisementhttps://d69107e3e3ccf5534442a6f15e9b744d.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Her appearance on the BBC One dancing competition helped increase awareness of the deaf community and sign language. After her partially silent dance with Giovanni Pernice last autumn, searches for information about sign language rose by almost 500% and the BSL Courses website reported an increase of almost 3,000% in sign-ups for its free training programmes.

Ayling-Ellis, who stars in Strictly Live UK along with fellow former contestants including Sara Davies and Tilly Ramsay, said: ”I’m delighted that every performance of the Strictly Live Tour will be signed by a BSL interpreter and put on to the screens so the whole audience will be able to see it.

“With 33 shows across the country, I really hope this news encourages more deaf people of all ages to come and enjoy the show.”

Camilla Arnold, series producer for the BBC’s long-running deaf community show See Hear, told the Guardian: “To have BSL access at every performance on the Strictly tour is a huge milestone for the deaf community, as we have, up to now, been restricted to very few dates with BSL access for performances and shows.

“This is such an exciting period for the deaf community, with See Hear celebrating its 40th birthday last year, the possibility of the BSL bill (England) being passed at some [time] in the near future and, of course, Rose … shining the torch for the deaf community.”

Although many theatres and arenas, such as the O2, can provide sign language interpretation to make shows more accessible, the producers behind the Strictly Live UK tour said their show is the first national British tour to feature a BSL signing at every performance.

Strictly Live UK begins in Birmingham on 20 January before going to other major cities including Manchester, Glasgow, Newcastle and London.

Paralympic Swimmer Will Perry ‘Sick To Death’ Of Dwarfism Abuse

January 12, 2022

A swimmer who represented Great Britain at the last Paralympic Games says he is “sick to death” of being laughed at because of his dwarfism.

Will Perry, from Northamptonshire, said there was a “big party” after Tokyo 2020, but once the celebrations ended the abuse started again.

He has a common form of dwarfism called achondroplasia and said people like him were often filmed or laughed at in the street. The 21-year-old has called on people to challenge those doing it.

He said: “With dwarfism, I face a lot of public abuse. I believe it happens because in so many films and on social media, we’re depicted in a comical way, we’re described as funny characters.”

Severely Ill Claimant Died After DWP Forced Him To Leave Hospital To Make Claim

January 11, 2022

With many thanks to Benefits And Work.

A coroner has issued a Prevention of Future Deaths (PFD) report after the DWP forced a severely ill claimant to leave hospital to make a claim, rather than allowing him to do so electronically. The claimant, who was very vulnerable to infection, subsequently died.

Terence Talbot, who had Bipolar Affective Disorder, was being detained under the Mental Health Act when he had a rare reaction to the medication he was being prescribed.

This left him very vulnerable to infection.

However, the DWP refused to let Mr Talbot make a claim for benefits electronically, instead insisting he had to make the claim in person.

In her report, the Coroner says that health professionals had never experienced such an ill patient being forced to make a claim in person before:

“I heard from all the doctors and a senior nurse in this case who have a considerable experience across a range of specialties and across several different NHS Trusts that they have never experienced nor heard of a case where a severely ill inpatient was required by the Department of Work & Pensions to leave hospital to attend its offices in person to make a claim for welfare benefits.

“Terence Talbot was suffering with a mental disorder and an exceptionally rare and complex disease with a risk of death and suffering severe exfoliative dermatitis that rendered him very vulnerable to infection.”

The secretary of state for Work and Pensions has until 28 January to say how the DWP will make sure that nothing like this happens again.

You can read the full story on the Disability News Service website and download a copy of the Prevention of Future Deaths report from the Judiciary website.

Room 5 With Helena Merriman

January 11, 2022

Helena Merriman was on Woman’s Hour yesterday discussing her new radio programme Room 5:

Three years ago, BBC radio broadcaster Helena Merriman received a shock diagnosis related to hearing loss after giving birth to her son. This prompted her to explore how people handle life-changing news about their health in a new radio series called Room 5 that airs on Radio 4 this week. Helena joins Emma to discuss the power of resilience.

The first episode of Room 5 airs today at 8am on Radio 4:

‘He was interested in why I was so attached to this penguin’
Bex is at university when she starts feeling anxious and overwhelmed. As Bex deteriorates, doctors are in a race against time to diagnose her. And that’s where the penguin comes in.

In Room 5, Helena Merriman interviews people who – like her – were changed by a diagnosis.

 

Dementia Cases Expected To Almost Triple Across The World By 2050

January 10, 2022

By 2050, more than 153 million people could have dementia, up from 57 million in 2019, experts are warning.

The predicted rise is largely down to ageing and growing populations.

But unhealthy lifestyles contribute too, the researchers say in The Lancet Public Health journal.

Risk factors that urgently need addressing and account for more than six million of the projected increase include high rates of smoking, obesity and diabetes, they say.

The study, which looks at 195 countries, aims to give governments an idea of what resources and support may be needed and what action might help.

Dementia is already the seventh leading cause of death worldwide and one of the major causes of disability and dependency among older people.

But it is not an inevitability. The researchers point to the importance of improvements in access to education in countries around the world and say that their projected figure for 2050 has already been adjusted downwards by 6.2 million based on what is expected to happen in this area.

They are less optimistic about the effects of obesity, high blood sugar and smoking and have already factored in an extra seven million cases in 2050 linked to those causes.

Quitting smoking

Lead author Emma Nichols, from the Institute for Health Metrics and Evaluation, at the University of Washington, in the US, said: “We need to focus more on prevention and control of risk factors before they result in dementia.

“Even modest advances in preventing dementia or delaying its progression would pay remarkable dividends.

“To have the greatest impact, we need to reduce exposure to the leading risk factors in each country.

“For most, this means scaling up locally appropriate, low-cost programmes that support healthier diets, more exercise, quitting smoking and better access to education.”

The study predicts cases will rise:

  • in eastern sub-Saharan Africa, from nearly 660,000 to more than three million – mainly driven by population growth
  • in North Africa and the Middle East, from almost three million to nearly 14 million
  • in the higher-income Asia Pacific region, from 4·8 million to 7·4 million
  • in Western Europe, from almost eight million to nearly 14 million
  • in the UK, from just over 907,000 to almost 1.6 million

Devon Training Café Helps 30 People Further Their Careers

January 7, 2022

A training café in south Devon that opened in 2020 has helped 30 people with additional needs get into jobs or further education, managers have said.

The No Limits Café in Newton Abbot is helping people make the transition into paid work through training and support.

Government research said fewer than 10% of adults with learning disabilities were in paid employment.  

Staff at the project said their example could show other potential employers the “benefits of a diverse workforce”.

Sarah Thorp, director of the café, which is a community interest company (CIC), said one of the motivations was because she “found it really difficult to understand” why there was a lack of employment for those with learning difficulties.

She said: “Supported in the right way, they are capable of accessing employment in all sorts of roles.”

Tom, 24, is one of the success stories of the project, which saw the café open in March 2020.

Ms Thorp said he had changed from being someone who “didn’t want to approach customers” to becoming “an amazing barista”.

Tom said he was inspired by the project and “got really good at making the patterns on the coffees”.

He then got a job through the government’s Kickstart scheme, which provides businesses with funding to take on unemployed 16 to 24 year olds.

He said the help from No Limits to get his new post at a dessert kitchen in Torquay was “really good”.

Ms Thorp said: “What we’re hoping to do is enable other organisations to realise what reasonable accommodations are [to allow people to work], and how easy they are to implement, so that they can reap the benefits of a diverse workforce.

“It’s hugely rewarding just to provide them [people the cafe supports] with that outlet and make the world more accessible.”

Dr Lin Berwick On Woman’s Hour

January 6, 2022

Dr Lin Berwick, author with CP, is on Woman’s Hour today on BBC Radio 4 at 10am:

Dr Lin Berwick MBE has cerebral palsy quadriplegia and became totally blind at the age of 15. She also has partial hearing loss and is a permanent wheelchair user. She wasn’t expected to live past her teens and has needed care 24/7 all her life. Now in her seventies, she has been a fierce advocate and ambassador for people with disabilities and their carers, and has written a new book On A Count of Three all about what it’s like having a carer – and what she thinks carers should know.

 

Guardian Letter On Masks In Classrooms

January 6, 2022

From today’s Guardian:

 

In light of the reintroduction of face coverings to secondary school classrooms this week, it is of course true to say teenagers are resilient, demonstrating endless adaptability. But spare a thought for deaf schoolchildren who can’t lip-read or understand facial expressions when face masks are being worn.

They have faced challenge upon challenge since the start of the pandemic, isolating during everyday life, facing cancelled exams and enduring online lessons without subtitles. Thousands of deaf secondary-aged pupils will be filled with a sense of dread about the reintroduction of face coverings in class as they return to school.

Public health should always be prioritised, but deaf children’s inclusion in society matters too. We cannot continue to see deaf children falling behind their classmates and their mental health suffering where a few simple adjustments and more sensitivity from the public would make all the difference.
Jo Campion
Deputy director of advocacy, National Deaf Children’s Society

Deaf Footballer Claire Stancliffe: ‘My Hearing Doesn’t Affect Me On The Pitch’

January 5, 2022

An England deaf team footballer says when she plays she “just feels normal” and is treated equally on the pitch to those who can hear.

Claire Stancliffe, 32, has won medals at the Deaflympics, World and European Championships during her career and currently plays for Corby Town in Northamptonshire.

She said football had given her life skills such as self-confidence and thinks there has never been so many routes into the game for disabled players.

“The most important thing I love about the game is that I just feel normal when I play,” she said.

“My hearing doesn’t affect me when I’m with a hearing team. On that pitch I’m treated the same as everyone else.”

Family Of Autistic Man Plan Legal Challenge Over Care Conditions

January 4, 2022

The family of an autistic man confined to an apartment and fed through a hatch are planning a legal challenge against his conditions, in a case that will increase pressure on the government to end the practice of keeping people with severe learning disabilities in “modern-day asylums”.

Nicola, whose 24-year-old son has been detained under the Mental Health Act since September 2017 at Cheadle Royal hospital in Cheshire, said his care is “worse than being in prison” and “people wouldn’t treat an animal” as badly.

She has appointed lawyers at Irwin Mitchell to explore a legal challenge to his circumstances which include constant monitoring by CCTV and outdoor access into a fenced-off garden at the facility which is run by the private Priory Group.Advertisementhttps://a7a9e580e1c4a94f2459f28c4a0516c9.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

“We fully appreciate that my son has complex needs but he’s being treated terribly,” she said. “He’s locked away from the world and has no physical contact with anyone.”

He also has a learning disability and Tourette syndrome and has been treated for aggression and anxiety. “I can’t even hold his hand or hug him because of the conditions he’s kept in,” his mother said. “Every time I see him it breaks my heart. He has no quality of life, he just exists.”

Campaigners are calling for greater efforts to provide care in the community for people like Nicola’s son and say about 2,000 people are held in such “assessment and treatment units (ATUs)” in hospitals, with about half of them having been there for at least two years. The placements are expensive partly because they require so many staff.

Mencap, a learning disability charity, said many of the people in inpatient units ended up there because of the lack of funding for social care and not because they have a genuine need for inpatient mental health care.

“The government ​must treat this scandal with the urgency that’s needed,” said Dan Scorer, head of policy at the charity. He said ministers had “broken promise after promise to ​close beds and support people in the ​community”.

The standard of some care homes for people with learning disabilities is also under growing scrutiny. In October, the Guardian revealed how conditions at Berkeley House, a care home in Kent run by a private chain, Achieve Together, declined so badly families were given less than a day’s notice of its closure.

Inspectors from the Care Quality Commission found residents “living in inhumane conditions”, according to a recently completed inspection report. There was no toilet roll and “faeces was found on two people’s bedding, pillows and another person’s chair”.

One resident had no bedding at all and staff had damaged residents’ furniture. Inspectors “observed a staff member pushing and forcing a person to sit in their wheelchair against their will” and others using derogatory language. There were not enough qualified staff, one bedroom stank of urine and safeguarding incidents went unreported.

“Staff spoke with people in a harsh tone and were focused on tasks rather than engaging with people to meet their emotional needs,” the inspectors reported, before labelling the facility “inadequate” and triggering its closure.

A spokesperson for Achieve Together, which is ultimately owned by an international investment fund, said: “We unreservedly apologise for the unacceptable shortcomings … We are clear that the provision fell way below the high standards that the people we support rightly expect and deserve, and that we know we can provide.”

The cases come a decade after the Winterbourne View scandal, in which BBC Panorama exposed the abuse of people with learning disabilities in a private hospital in Gloucestershire.

Kirsty Stuart, a public law and human rights lawyer at Irwin Mitchell representing Nicola and her son, known as patient A, said she was now representing 25 other families whose loved ones are in ATUs.

“They feel they have no option but to seek legal advice in order for their loved ones to receive the care they deserve,” she said. “We call on the Priory, the CCG and local authority to work with ourselves and Patient A’s family to reach an agreement over his care, which the family believe should be in the community as this would give him the best quality of life.”

Liverpool city council said it could not comment on individual cases.

A spokesperson for the Priory Group said it was committed to “ensuring well-planned transfers to the most appropriate community settings whenever they become available” but said: “Some individuals with highly complex behaviours, and detained under the Mental Health Act, can be difficult to place despite all parties working very hard over a long period of time to find the right setting.” It said care was continually reviewed to ensure the “least restrictive setting possible”.

A spokesperson for the Department for Health and Social Care said: “We are determined to continue reducing the number of autistic people and people with a learning disability in mental health hospitals as well as the reliance on inpatient care. That’s why we are investing in community services and supporting discharges with £90m of additional funding this financial year.”

NHS Liverpool clinical commissioning group has been contacted for comment.

George Alagiah: Cancer Will Probably Get Me In The End

January 4, 2022

BBC newsreader George Alagiah has said he thinks the cancer he has had since 2014 will “probably get me in the end”, but that he still feels “very lucky”.

“I don’t think I’m going to be able to get rid of this thing. I’ve got the cancer still. It’s growing very slowly,” he said on the podcast Desperately Seeking Wisdom.

Alagiah was first diagnosed with stage four bowel cancer in April 2014.

But he said he was able to look back at the “great good fortune” in his life.

Speaking on the podcast with ex-Downing Street director of communications Craig Oliver, Alagiah said that when his cancer was first diagnosed, it took a while for him to understand what he “needed to do”.

“I had to stop and say, ‘Hang on a minute. If the full stop came now, would my life have been a failure?’

“And actually, when I look back and I looked at my journey… the family I had, the opportunities my family had, the great good fortune to bump into (Frances Robathan), who’s now been my wife and lover for all these years, the kids that we brought up… it didn’t feel like a failure.”

He also spoke about his treatment, saying: “My doctor’s very good at every now and again hitting me with a big red bus full of drugs, because the whole point about cancer is it finds a way through and it gets you in the end.

“Probably… it will get me in the end. I’m hoping it’s a long time from now, but I’m very lucky.”

Alagiah has also worked as a BBC News foreign correspondent and specialist on Africa and the developing world, covering events including the Rwandan genocide and interviewing Nelson Mandela and Archbishop Desmond Tutu.

‘Recognise the humanity’

In October, the journalist said he was taking a break from TV to have treatment after “a further spread of cancer” was discovered. He said in June 2020 that the cancer had spread to his lungs, liver and lymph nodes.

When asked what piece of wisdom he would give, he spoke about the need for people to think more collectively.

“I think it would be to constantly ask the question, ‘What is it we can do together?'” he said.

“I spent a lot of my time in Africa, and in South Africa they have a word: Ubuntu. It’s the idea that I’m only human if I recognise the humanity in you.

“There’s this collective notion of life which I think we have lost.”

Daughter Had To Tell Deaf Father He Was Dying

January 3, 2022

When Francesca Bussey’s deaf father was admitted to hospital in 2019, she dropped everything to be available to sign for him. But is it always appropriate for relatives to interpret for their loved ones? And are we taking advantage of goodwill to cover for a shortfall in professional interpreting services?

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Francesca Bussey was at her elderly father’s bedside when a doctor arrived with terrible news.

Her profoundly deaf dad had been in hospital for a month, and although Francesca had repeatedly asked nurses to book an interpreter for him, he had received just two hours of British Sign Language (BSL) interpreting support.

“When he was well my dad could lip read,” Francesca says, “but by this point he could barely see. They put up a sign behind his bed – a picture of an ear with a cross through it – and they’d come round and shout at him, and he’d be frightened and confused and not know what was going on.”

So 42-year-old Francesca – like tens of thousands of others across the UK who routinely lend their ears and signing skills to their deaf parents to help them navigate a world built for the hearing – stepped in. And without missing a beat, Francesca interpreted the news for her father that day.

“There was no time lag,” she says, “I was told it. I interpreted it.

“I had to tell him he was dying.”

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Francesca grew up as a hearing child with two deaf parents in the 1980s – a time before mobiles and texting – and started signing at just seven months old.

“My first language is British Sign Language (BSL),” she says. “It’s a huge part of me – I love my language.”

Francesca took on a lot of responsibility from a very young age – her parents had little choice but to rely on her to get things done that the rest of us take for granted. By the age of four she was making phone calls on their behalf, and by eight was dealing with the bank.

“They were always very aware of not wanting to burden me,” she says, “but it was just easier for me to do it. I felt very grown-up, I was different and important.”

Looking back though, Francesca says it was hard having to constantly help her parents. “I was on call all the time,” she says. “I never had a time when I didn’t feel responsible for communication.

“As a child you aren’t able to say, ‘I can’t do it anymore,’ [because] you don’t know where your boundaries are.”

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Being the child of deaf parents is no ordinary upbringing. Thirty-one-year-old Glaswegian comedian Ray Bradshaw has carved out a stand-up career mining a rich seam of stories from his childhood.

“If I swore as a kid while signing, my parents would take me into the kitchen and wash my hands with soap,” he jokes.

 

Ray’s material is witty, light-touch activism, often hinging on the scarce availability of BSL interpreters in schools, hospitals, and businesses. When the interpreter is a no-show, family members often jump in to fill the gap – like the time Ray mischievously stepped up to “mistranslate” his school parents’ evening to his own advantage.

But Ray says something is wrong when people have had to translate terminal illness diagnoses to their own parents.

Prof Jemina Napier, a specialist in sign language and communication at Heriot-Watt University, says hearing children of the deaf are talented linguists. But they are also equipped with a whole slew of cognitive and emotional skills that come from being keyed into the adult world from an early age, deciphering the subtle registers of adult speech, and solving complex problems.

Like Francesca and Ray, Prof Napier is hearing but grew up in a deaf household. She rails against the notion of deafness as a deficit, seeing it instead as a cultural identity to celebrate, and is similarly positive about interpreting. She calls it “brokering”, to encompass a sense of the emotional negotiation involved.

But there’s a vast difference between dealing with a pizza delivery at the front door and interpreting in challenging situations as Francesca had to in hospital with her father, she says.

“Kids feel out of their depth. The emotional impact of those very high stakes settings is not appropriate.”

  • There are around 11 million people in the UK who are deaf or hard of hearing
  • There are 151,000 British Sign Language users in the UK

Thirty-year-old Pearl Clinton also had to break life-changing medical news. When she was 12 her father died, and it fell to Pearl to tell her mum. Then at the age of 28 Pearl had to explain to her grandmother that she was dying.

Now she is campaigning to put an end to family members interpreting at medical appointments, not only because of the difficulties they face relaying complex medical information, but also because of the potential impact that having to break bad news might have on mental health.

“Since launching the petition, I’ve heard so many stories,” Pearl says. “It is still happening.”

Under the 2010 Equality Act, deaf people should have access to sign language interpreting in hospital, but in reality interpreters are thin on the ground. Hospital staff are under pressure and don’t always recognise that it’s an issue to rely on relatives.

“It’s absolutely not their fault,” Francesca says. “They’re ridiculously busy, they’re overwhelmed, and sometimes they don’t know how to do it.”

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The world has moved on since Francesca’s profoundly deaf mum was a child. She was sent to boarding school in 1952 when she was four years old. Francesca says the aim was to produce deaf people who could, “function in mainstream society” – but she simmers with anger as she describes the dreadful treatment her mother experienced there.

“My mum was put in a straitjacket basically – they tied her arms to the bed and put her hands in gloves. Another time she was locked in an air-raid shelter,” Francesca says.

“Imagine being a small child, punished for trying to talk to your friends and use sign language, when you can’t hear anything and your family isn’t there.”

Francesca says her mother is a smart woman, but she left school at 16 with no qualifications and a reading age of about nine. She says the treatment her mother endured at boarding school affected her mental health well into adulthood.

“There is a whole generation of deaf people for whom similar things happened,” Francesca says.

There are still many frustrations for deaf people today. When activist and deaf parent Rubbena Aurangzeb-Tariq was employed as an accessibility consultant for a train company, she advised them that their ticket office window glass was too reflective for lip-readers. It was easily remedied with a change of lighting or non-reflective glass, but nothing was done.

For Rubbena, this isn’t just annoying, but also belittling as her 12-year-old daughter has to come along to buy her train tickets.

But there have been many positive changes. Growing deaf awareness is making a difference. Deaf parents have access to better education, and information technology means that they are much less reliant on their hearing children.

There are organisations for the children of deaf adults (CODAs), where people can share their experiences and celebrate their heritage, and a historic lack of representation in the mainstream media is also being challenged.

When 27-year-old Rose Ayling-Ellis, who plays Frankie Lewis, a deaf EastEnders’ character who left Walford in November, became the first deaf contestant on Strictly Come Dancing this year, there were reports of record numbers of people searching for signing courses online.

Ella Depledge, aged 21, is one of the younger generation of hearing children who feel less pressure about interpreting for their deaf parents than others perhaps have in the past.

“It’s stressful,” Ella says, “I used to feel very heavily responsible and it wasn’t good for me. I made a decision a while ago to just say ‘no’.”

Ella’s parents support her decision, but she appreciates the linguistic insights her early interpreting has given her and has just finished a degree in English at King’s College, London.

“If you can sign, it gives you a really cool understanding of language,” she says.

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Francesca’s lifelong responsibility for interpreting on behalf of her parents has shaped her, too. She has a successful career subtitling for a TV network and laughs as she describes herself as very good at “adulting” and never being late for anything.

But being a daughter and an interpreter all at once – and finding out that her father was dying one moment and having to relay that information the next – was difficult.

“I’ve done a lot of hard things in my life,” she says, “but that was the hardest.”

Carol In Sign Language Spreads Festive Cheer

December 23, 2021

A school for children who are deaf or who are visually impaired have recorded a special Christmas carol video.

It features pupils from Jordanstown school using sign language alongside the classic Christmas song “O Holy Night”.

A well-known singer has also lent her vocals to the piece.

Former winner of BBC’s The Voice, Andrea Begley who is also visually impaired, sings the lyrics featured in the video.

She said: “There’s just such a huge wealth of talent at the school.

“Music really does embody that hope and accessibility for everybody.”

This seems a very appropriate ‘note’ on which to end our posting for 2021. With one of our favourite singers singing us a Christmas carol.

Season’s Greetings, readers. There will be no further posts until January 3rd.

Tony Hickmott: Autistic Man Was ‘Loneliest Man In The Hospital’

December 22, 2021

A whistle-blower in the case of an autistic man who has been detained in hospital since 2001 says he feels complicit in his “neglect and abuse”.

A BBC investigation found 100 people with learning disabilities have been held in specialist hospitals for 20 years or more, including Tony Hickmott.

His parents are fighting to get him rehoused in the community.

A support worker at a hospital where Mr Hickmott has been detained said he was the “loneliest man in the hospital”.

The company that ran the hospital until 2020 no longer exists and former directors, who the BBC contacted, declined to comment.

Mr Hickmott was sectioned under the Mental Health Act in 2001. His parents, Pam and Roy Hickmott, were told he would be treated for nine months, and then he would be able to return home.

He is now 44 – and although he was declared “fit for discharge” by psychiatrists in 2013, he is still waiting for authorities to find him a suitable home with the right level of care for his needs.

Last month, the BBC overturned a court order allowing the reporting of his story – one that is now in the hands of the Court of Protection.

‘Locked up with criminals’

Following the report, Phil Devine came forward to talk about conditions at the hospital, which we are not naming for Mr Hickmott’s care and wellbeing.

Mr Devine said he worked in the private, low-secure hospital as a cleaner and a support worker between 2015 and 2017.

It was run by a company that at the time was called the Huntercombe Group, until it was sold last year.

Some of the patients there had committed crimes, while others, like Mr Hickmott, were detained under the Mental Health Act.

Mr Devine said only Mr Hickmott’s basic needs were met. “Almost like an animal, he was fed, watered and cleaned. If anything happened beyond that, wonderful, but if it didn’t, then it was still okay.”

“The management at the hospital said to us: ‘Here’s a care plan. At so and so time get breakfast, at so and so time get him dressed’. That’s just a schedule – that’s not a care plan,” he said. “It was strict, it was rigid. But that was all Tony had.”

Mr Devine said unlike many other patients in the hospital, Mr Hickmott had very little freedom. He spent all of his time in segregation.

Mr Devine believes this was primarily down to the risk of other patients in the hospital. He said: “He had never committed a crime, but here he was, living in solitary confinement.”

He has now met Mr Hickmott’s parents to give them an account of how he felt the system had failed their son.

In 2020, the hospital was put into special measures because it did not always “meet the needs of complex patients”. A report highlighted high levels of restraint and overuse of medication, a lack of qualified and competent staff and an increase of violence on many wards.

The hospital has now been taken out of special measures but still “requires improvement”, according to the Care Quality Commission.

‘Homes not hospitals’

Mr Hickmott is not alone in his detention. There are currently 2,070 patients held in hospitals and other secure settings across England. Some 100 of those have been detained for more than 20 years.

In 2015, the government promised “homes not hospitals” when it launched its Transforming Care programme in the wake of the abuse and neglect scandal uncovered by the BBC at Winterbourne View specialist hospital, near Bristol.

It has repeatedly missed its targets to close beds and move people close to home, back in their community with the right care and independence.

The Huntercombe Group, which ran the hospital, was sold in late 2020 by its parent company, Four Seasons, which is currently in administration.

While the name still exists, the previous company is no longer in existence.

In a statement, the group said: “The Huntercombe Group that ran this hospital up to the end of 2020 are a different legal entity to the current Huntercombe Group, who were not established at the time and therefore not involved in providing services.

“All patient records from the hospital are held by the previous owners of the former group, and as such the current Huntercombe Group hold no records of patients.”

A spokesperson for the NHS said it was working closely with Tony, his family and local commissioners to meet his complex care needs.

It said the number of people with a learning disability or autism who were in a mental health inpatient setting had reduced by 28% since March 2015.

Paul Marsh Jailed For Killing Jessica Dalgleish After She Refused To Eat Lunch

December 21, 2021

A man who killed his girlfriend’s three-year-old disabled daughter after she refused to eat her lunch has been jailed for 11 years.

Paul Marsh, 27, of Folkestone, Kent, inflicted catastrophic injuries on Jessica Dalgleish after he became angry and frustrated, a court heard.

He then tried to cover up the attack, claiming she’d fallen down the stairs.

Marsh was convicted of child cruelty and manslaughter at a previous hearing at Maidstone Crown Court.

Jessica died in hospital on Christmas Eve in 2019.

The court heard Marsh, a care worker, had thrown her very roughly and with considerable force, so her head hit a hard surface, which may have been the wooden bars of her cot, the floor, or the banister.

‘Pain and suffering’

Jessica’s mother called Marsh an “animal” and a “monster” in her victim impact statement.

“I beg that the monster who took her suffers every day of his miserable life,” she said.

“I will never recover from losing my baby, Jessica was a light in the world.”

Sentencing Marsh, the honourable Mr Justice Cavanagh said: “The whole family mourns the life that Jessica will not now have, and suffers from the trauma of knowing how she died.

“It is clear that the death of this lovely small child has caused great pain and suffering to a large number of people.”

Marsh was sentenced to nine years in jail for manslaughter and a further two years for child cruelty, to run consecutively.

After Marsh was jailed, Det Ch Insp Neil Kimber, from Kent Police, said: “This is a tragic case in which a young girl has been robbed of her life before it had really begun.

“Marsh was reluctant to get medical attention for Jessica on the day he inflicted these injuries and he has since sought to evade justice by changing his account and lying about what actually happened on that day.”

The court heard Marsh had worked as a support assistant in a home for adults with profound learning difficulties.

But jurors were told that instead of calling 999, Marsh immediately tried to cover up what he had done.

Marsh, who was first-aid trained, had also moved her when he knew he shouldn’t, to help his false story that Jessica had fallen down the stairs, the judge said.

Following the hearing, a Kent County Council spokesman said the circumstances surrounding Jessica’s death were the subject of a multi-disciplinary review in January 2020 by the Kent Safeguarding Children Multiagency Partnership.

He said the learning from the review had already been fed into professional training, and a further report was expected early next year.

Teen Says Strictly Come Dancing Shows Deaf People ‘Not On Side-Lines’

December 21, 2021

A teenage actor has said the first deaf winner of Strictly Come Dancing has shown that those who cannot hear are “not just on the side-lines”.

EastEnders actor Rose Ayling-Ellis, the first deaf contestant in the BBC programme’s history, won the 2021 competition on Saturday.

Paris Thompson, 17, from Norfolk, who was born deaf, wants to follow in her footsteps.

“I’m here, I’m ready for anything,” she said.

“Just be aware that there are deaf people that need roles and that there are deaf people in the arts community that want to be involved and they shouldn’t have to be separated from it,” she said.

Paris, is part of the theatre company at The Garage in Norwich, which provides performing arts programming, participation and education for all ages, but particularly focuses on young people in challenging circumstances.

She started acting in nursery school in the role of Mary in the Nativity and has made a short film called Coda.

“I just love acting, it’s hard to pinpoint why, I just really enjoy being a character,” she said.

Ayling-Ellis and her professional dance partner Giovanni Pernice were praised throughout the BBC series but the production paid particular tribute to the deaf community, while dancing to music by Clean Bandit and Zara Larsson.

Halfway through, the music cut out as the pair danced on, in order to show people what a deaf person’s world was like.

“I actually loved watching Strictly, it was so exciting,” Paris said.

“I think Rose has really just opened [things] up more for the hearing world, for everyone to see that deaf people are not just there on the side-lines.

“We are here and we do need opportunities and we can do the same things that any hearing person can do.”

Strictly: Rose Ayling-Ellis On Her Historic Strictly Win

December 21, 2021

EastEnders star Rose Ayling-Ellis has become the first deaf contestant to win BBC One’s Strictly Come Dancing.

She told BBC Breakfast she wants to “inspire the hearing people to change their perception of the deaf community”.

We Want Your Reactions To Rose Ayling Ellis’ Strictly Win

December 20, 2021

This news made our day on Saturday evening and from what we saw online, many others shared our excitement. So please consider this an open thread of celebration, to share what the Strictly result means to you.

Rose Ayling-Ellis: Strictly Star Inspires Sign Language Lessons Surge

December 17, 2021

The first deaf contestant on Strictly Come Dancing has inspired a surge in people learning British Sign Language.

The director of one firm offering BSL courses told Radio 1 Newsbeat enrolments have gone up by more than 2,000% since Rose Ayling-Ellis has been on the show.

Google Trends, which analyses online search data, also suggests more and more people are interested in learning.

Rose, 26, is best known for playing Frankie Lewis in EastEnders.

But she’s made headlines throughout this year’s Strictly competition as she repeatedly brings attitudes towards disability into the spotlight.

Russell Fowler, director of the website BSL Courses, says there are always “spikes” in people signing up to learn sign language following new episodes of Strictly.

“On one Saturday we had over 1,000 and another time we received 778,” he says.

“In August we were averaging around 20 to 30 enrolments a day, but by November, we were receiving an average of 400.”

These stats are backed up by digital PR researchers Molly Jordan, 21, and Maddie Peacey, 23.

The pair, who are both from Oxford and describe themselves as Strictly super fans, have been monitoring Google Trends since the series began.

“When I was first watching it, I thought I’d love to learn sign language myself and I wondered if other people were thinking the same thing,” Molly says.

She found that search for the terms “learn sign language” and “sign language course” had increased by 300% and 222% since November 2020, respectively.

Molly and Maddie both decided to sign up for lessons.

‘I feel so proud’

“With people wearing masks it’s an even better time to start learning,” says Maddie.

“We’ve learnt the basics and how to say ‘good luck, Rose’.”

Molly adds: “It’s exciting and you feel so proud when you’ve achieved something and you’re able to communicate it.

“We’re also trying to teach it to friends and colleagues, so it spreads.”

Sixth form student Daisy Bennett, 16, says her sign language lessons will help her goal to become a child psychologist.

“I’ve always been intrigued by BSL and how deaf people communicate and after watching Rose on Strictly, I felt like it was time to take it up,” says Daisy, who lives in Essex.

“So far I’ve learnt the whole alphabet and some basic communication, so like ‘hello, goodbye, my name is’, as well as basic objects around the house.”

The college student says sign language is different to other languages she’s had lessons on in the past because “a lot of the signs are similar and you don’t include every word like you do when you speak”.

Eventually, Daisy wants to be able to “have a full conversation with someone who uses sign language”.

‘It’s crazy’

Jason Tennant, 29, is a BSL teacher, in Margate, Kent.

He is profoundly deaf and has used BSL to communicate all of his life.

During lockdown, Jason noticed he was getting more sign-ups, with people wanting to “be better allies to the deaf community”.https://emp.bbc.co.uk/emp/SMPj/2.44.10/iframe.htmlMedia caption, Strictly finalists: ‘We all represent something’

But he says Rose’s Strictly appearance has accelerated things further.

“We’re getting enquiries for courses beginning in September 2022. That’s crazy because we usually start new classes in September or January, but that might change with all the new demand.”

Learning sign language isn’t as difficult as people might think, Jason says, adding that most of his students “achieve the basics” within about 20 weeks.

“You’d be amazed with how much you already employ BSL by yourself. There are universal signs out there that we use already in our everyday life.”

Jason has known Rose for a few years and says “she’s a lovely presence to be around”.

He says he’s loved watching her throughout the series, and was particularly moved by hers and Giovanni’s Couple’s Choice dance which featured a “silent moment” in tribute to the deaf community.

“When the music cut, it felt like our world was on show for a brief moment,” Jason says.

“I was sat on the floor, tears streaming down my face. I tried to talk to my partner but my emotions got the better of me, so he just came and hugged me and we just watched Rose be herself.”

“I’m still bowled over that someone like me could be on [Strictly], such a massive institution.”

Billie Eilish Says Porn Exposure While Young Caused Nightmares

December 16, 2021

Singer Billie Eilish has described how she suffered nightmares after being exposed to “abusive” pornography from the age of 11.

Speaking on SiriusXM, the 19-year-old said she is now “devastated” to reflect on her exposure to the content.

Eilish said the experience led her to “not say no to things that were not good” when she began having sex.

“It was because I thought that’s what I was supposed to be attracted to,” the Grammy Award-winner said.

Eilish, who is about to turn 20, has spent much of her teenage life in the public eye. She forged a reputation for wearing a baggy style of dress and has regularly spoken about body image and being sexualised while growing up.

The topic of pornography came up in the interview as it is referenced in a song, Male Fantasy, on her album Happier Than Ever.

She told interviewer Howard Stern that she now thinks porn “is a disgrace” after watching content she described as “violent” and “abusive” while growing up.

Eilish particularly criticised the way pornography can depict women’s bodies and sexual experiences.

“I didn’t understand why that was a bad thing – I thought it was how you learned how to have sex,” Eilish said about watching, adding her mother was “horrified” when she told her.

“I was an advocate and I thought I was one of the guys and would talk about it and think I was really cool for not having a problem with it and not seeing why it was bad.”

The singer-songwriter said she believed viewing the content while so young had “destroyed” her brain and caused her to suffer nightmares.

Eilish said it is a “real problem” that porn could skewer wider understandings of what is normal during sex, including around consent.

The view is echoed by experts focusing on child welfare, including Unicef, who say exposure to pornography at a young age can be harmful. They say pornography that portrays abusive and misogynistic acts can lead to normalisation, as well as poor mental health and other negative outcomes in children.

Eilish also discussed a range of other issues in her interview, including dating in the public eye and contracting Covid-19 earlier this year despite being vaccinated.

“I didn’t die, and I wasn’t gonna die, but that does not take away from how miserable it was. It was terrible,” she said, adding she was unwell for almost two months.

Sex And Cancer: ‘I Was Ashamed To Ask For Help’

December 16, 2021

When Cait Wilde was diagnosed with cancer at the age of 17, her sex life was way down the list of things to worry about. But after treatment, when she was ready to get intimate again, she was met with pain, discomfort, shame – and didn’t know how to get help.

Warning: This article contains adult themes.

Cait, from Manchester, had a type of blood cancer called acute myeloid leukaemia.

She describes her sex life before cancer as “pretty wild”, but during chemotherapy doctors told her sex could actually be dangerous.

Some 46% of younger people with cancer say it negatively affects their sex life, compared with an average across all age groups of 37%, according to research by Macmillan Cancer Support.

Almost 2,400 people aged 15-24 are diagnosed with cancer every year in the UK, according to the latest available data from Cancer Research UK.

‘A hypothetical chastity belt’

Treatment had left Cait with a low platelet count. Not enough platelets means if you get even a small cut or skin tear, as can happen quite often during sex, your blood won’t clot and you’ll just keep bleeding.

“It was kind of like having a hypothetical chastity belt put on me,” Cait tells Newsbeat.

As she “jealously” watched her friends from college head out on dates, Cait battled various side effects of her illness and treatment – including hair loss, weight fluctuations and excruciating bone pain.

She lost interest in sex during chemo but after a successful bone marrow transplant, “certain feelings started coming back” and Cait wanted to have sex again.

But when she tried to masturbate one night, she experienced “discomfort and pain”.

‘I felt broken’

Cait didn’t know at the time, but her chemotherapy and radiotherapy treatment had caused her body to go into chemical menopause.

One of the many possible symptoms of menopause is vaginal atrophy, where the vagina gets thinner and drier – making sex uncomfortable.

But no-one had warned Cait this might happen so she felt “left in the dark”.

“I thought: ‘This isn’t as fun as I remember it to be,'” Cait says.

She had just begun to feel ready to try dating again but the bad experience meant she lost confidence, as she started to imagine having to explain to anyone she wanted a relationship with that she couldn’t have sex.

“I felt, in a way, kind of broken. It brought on quite a bit of shame,” she says.

Cait was so ashamed she didn’t speak to anyone about what had happened for months.

But eventually she found out “by chance” that a nurse at her transplant clinic had set up a clinic for women’s health – where Cait finally managed to get support and advice.

“By the end of that appointment I walked out a lot more confident,” she says.

“I had to rediscover everything, but I was able to do that educated and much more safely.”

‘I felt so ugly’

Jack Fielding found it too “embarrassing and awkward” to ask his healthcare team for advice about sex after he was diagnosed with a type of sarcoma known as MPNST.

When Jack, from Bolton, lost weight and his hair during treatment in 2019, he felt “a part of who I was” had disappeared too.

“My self-esteem was knocked so much,” the 26-year-old tells Newsbeat.

“It made me feel almost alien-like. I’d just look in the mirror and I wouldn’t see myself anymore.

“Getting naked in front of somebody at the time was such a scary thought to me because I felt so ugly.”

Macmillan Cancer Support says cancer can affect someone’s sex life in loads of ways, including:

  • Emotional impact of diagnosis, leading to a loss of interest in sex
  • Short-term impact of treatment such as fatigue
  • Body image issues from hair loss, weight loss/gain, and scarring
  • Long-term impacts such as reduced mobility or physical changes in how your body works sexually

Psychosexual therapy is “under-resourced” in the NHS so most people have to pay for private care if they want help, according to Caroline Lovett, who’s one of a “small group” of such therapists employed by the health service with specialist cancer training.

“Going through puberty and thinking about your sexual wellbeing is difficult enough, but if you’re a teenager living with cancer it can feel even more lonely,” she says.

Dr Richard Simcock agrees the availability of specialist therapy is “very patchy” across the UK.

The consultant cancer specialist and clinical advisor for Macmillan Cancer Support says the NHS would benefit from more specialists because problems faced by people like Cait and Jack aren’t always being addressed.

“We need to make sure that healthcare professionals are trained to deal with those questions sensitively, but also trained to make sure that they answer those questions,” he says.

Cait’s now campaigning to improve sex advice and information for people with cancer and has worked with other young cancer survivors to write a magazine about their sex stories.

“Even if it’s bit TMI, it’s our experiences, and we want to encourage people to be more honest,” she says.

“I don’t want people to feel left in the dark like I did.”

Disabled Woman Highlights Disability Microaggressions With Photos

December 15, 2021

A woman who has a very rare and progressive muscle-wasting condition is hoping to initiate conversations around prejudice towards disabled people.

Louise Halling, from Poole, has taken a series of photographs highlighting some of the comments she has received that she describes as “microaggressions” towards her.

Louise has worked with the charity Muscular Dystrophy UK to release the photographs on her social media accounts.

The Great Subtitles Fiasco: Channel 4 Must Be Punished For Failing Deaf Viewers

December 14, 2021

Let’s abandon the misconception that only deaf and disabled people benefit from subtitled television. If you were one of the 5.7 million viewers in the UK who watched the Korean drama Squid Game last month and opted for subtitles, you’ll know what I mean.

Everyone who watches content with subtitles does so to engage with a show and process information in a way they otherwise couldn’t. In every situation, subtitles are an accessibility feature.

Channel 4’s subtitles outage in September affected huge numbers of viewers. Damage to hard drives caused by the triggering of the fire suppression system at the London base of Red Bee Media – which provides access services to large broadcasters – left Channel 4 viewers without subtitles for weeks, with casualties including the latest series of The Great British Bake Off.Advertisementhttps://af35494d408150a14e6d27aadacaf571.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Accidents happen, and sometimes there’s no one to blame. But Channel 4’s response to the incident was lacklustre. It was not the only broadcaster affected – Channel 5 and the BBC also experienced loss of subtitles. Yet months later, it is the only channel yet to resume normal service across both its live programming and catch-up service. It has only sorted the former. The broadcaster took nearly a month to fix the subtitles on their broadcast output, although this was quicker than the mid-November date they’d initially predicted, due to having “to build a completely new system”.

As well as that, Red Bee and Channel 4 failed to provide detailed and consistent updates on the situation. Over a fortnight after the initial outage, the Royal National Institute for Deaf People published a statement on their website in which they singled out Channel 4 for criticism. It stated: “We do not believe that they have communicated effectively with the deaf community.” They had to resort to writing to the broadcaster to ask them to provide the deaf community with updates on – among other things – how long the situation would continue. Granted, Channel 4 did issue a series of press releases with updates on the situation, but they came far too late – making deaf and disabled viewers like me feel completely disrespected.

Also, returning subtitles to live programming does not mean the issue is over and done with – and we cannot give Channel 4 an easy ride on the matter. There is still a huge problem with catchup services. I approached Channel 4 for a comment as part of my reporting on the issue, and a spokesperson told me the subtitling backlog for this won’t be resolved until the second week of December. That’s two and a half months after the initial incident – which is shameful.

Deaf and disabled people should not be waiting for access, and yet they are. In some instances, we miss out on programmes completely, with them disappearing from our screens and streaming services before they have a chance to be subtitled. This is especially the case for US programmes licensed by Channel 4, which have a limited shelf life on All 4 due to rights reasons.It has already caused issues for those looking to watch series five, episode one of the US legal drama The Good Fight, which was taken off All 4 at the end of November before it could be captioned. Deaf and disabled users have now been cut out of a conversation they were entitled to enjoy at the same time as everyone else.

It’s outrageous, though unsurprising. Deaf people often find themselves left behind the zeitgeist. The state of UK cinemas is so dire in terms of accessibility that I have to wait weeks for a subtitled screening. Provided the captions file doesn’t encounter any technical difficulties – as happened when I finally got to see No Time to Die last month and a big cinema chain ended up running a version without subtitles instead – I can join the conversation around the latest blockbuster release several weeks late. In that time, friends and family members may well have moved on to the next big thing.

Another prominent example of failure to serve deaf viewers is the UK government’s coronavirus briefings. Having rejected a petition signed by over 26,000 people, the government’s refusal to provide a British Sign Language (BSL) interpreter is forcing deaf people to receive public health information from unofficial channels or via word of mouth.

As for All 4, what does it say when a service that could help us deaf and disabled viewers “catch up” on content we missed the first time (because it wasn’t subtitled) isn’t accessible, either? It’s a damning stain on the reputation of a broadcaster that has long put diversity and inclusion at the forefront of its branding.

Eventually, captions will come back to All 4, but the trust Channel 4 has built up with deaf and disabled subtitles users will take much longer to rebuild. The National Deaf Children’s Society has estimated that the broadcaster will fail to meet the annual 90% target for subtitled content it is legally obligated to provide by the Communications Act 2003. This is unacceptable. Ofcom has suggested that they intend to take enforcement action if this happens, and they must not take this infringement lightly, if so. Ofcom needs to make sure that any action taken is to the greatest extent possible. Channel 4 must take its responsibilities to deaf and disabled viewers far more seriously – and the regulator needs to send a strong message to the broadcaster to ensure this happens.

Even if this were to be the case, it would not necessarily solve the situation with All 4, which could still justifiably fail to provide access under current regulation. Unlike TV channels, streaming services have no legal obligation to provide access services. The Digital Economy Act 2017 allows the culture secretary to impose requirements on providers, but we’ve yet to see this done.

This has to change. A failure to start regulating catch-up services on their access provision would mean broadcasters can fail to give sufficient priority to subtitling on these platforms, without consequences. When TV channels fall foul of accessibility requirements, they risk Ofcom breathing down their neck, ready to take regulatory action. It’s time the government recognises the contribution catch-up services make to the world of entertainment, and legislates to ensure that every viewer’s experience is accessible.

It’s a move that is long overdue. Only when this happens, together with strong action against Channel 4 from Ofcom, will the public be able to have any confidence that we can prevent such a dire case of inaccessibility from happening again.

‘It Was Magical’ – Meet The First Disabled Crew To Fly In Zero-Gravity

December 13, 2021

Becoming an astronaut is out of reach for most people. But could the tough selection process be doing more harm than good? New space firm, Mission Astro Access, wants to challenge the perception that space travel is only for those who meet specific physical criteria, and has sent its first disabled crew on a zero-gravity flight.

“It was magical,” says Sina Bahram of his first experience of weightlessness. “I’ve wanted to do this since I was four years old, but the underlying assumption was ‘that’s totally impossible’.”

The blind computer scientist, from North Carolina, was one of 12 disabled ambassadors selected by Mission Astro Access in America to experience a zero-gravity flight while conducting experiments looking at inclusive space travel.

In the future, this could mean incorporating tactile pathways in and around shuttles or utilising sound or vibrations to convey information.

“It can benefit the entire aerospace community,” Sina says, explaining that when adjustments are made for disabled people it makes everyone’s lives easier. The curb-cut to lower pavements, for instance, was created for wheelchair-users, but is welcomed by parents with prams.

Nasa astronaut Chris Hadfield might be keen to hear that. He made headlines in 2001 when cleaning fluid leaked inside his visor and irritated his eyes so he was unable to see mid-spacewalk.

Had tactile and audio information been available to him, not only would it have benefitted a blind crew but Hadfield might have felt safer too.

In October, the Mission Astro Access crew travelled to Long Beach, California and boarded a Boeing 727 for a parabolic flight. Sometimes referred to as the Vomit Comet, the plane flies in large arcs. As the plane tips over the arc it goes into free-fall creating weightlessness for about 20 seconds.

“The moment it actually sunk in was when they closed the cargo door,” says ambassador Mary Cooper who has always dreamed of space travel but thought it impossible.

The aerospace engineering and computer science student at Stanford University was born with fibular hemimelia, where part or all of the leg bone is missing. Mary had her left leg amputated below the knee as a baby and uses a prosthetic. “It’s one of my favourite things about me now,” she says.

As the plane went over the top of the arc and gravity disappeared the crew felt weightless for the first time – an extraordinary sensation.

“It’s not that you’re floating up, it’s that you’re no longer getting pulled down,” Sina says excitedly. “You’re sitting on the ground, you push off so much as with one finger and you’re floating.”

Sina had wondered what floating blind would be like when his constant point of reference – gravity – disappeared.

“I was expecting disorientation,” he says, “[but] once I started getting used to zero-g I immediately found it comfortable and easy for me to push off with less force and to use a little more finesse.”

Each crew member worked with MIT on specific experiments in-line with their disability to see how the industry could move forward, inclusively.

Sina tried using audio beacons to navigate by sound.

“Guess what? We couldn’t hear them,” he says, saying it is far louder than a commercial flight. “That’s a learning.”

But something unexpected happened.

When the command “feet down” was yelled – signalling the end of the parabola – “many of us in the blind and low vision crew were able to find our mats,” he says.

“That was just really a testament, both to our internal working memory and all the solutions we’ve had to come up with on earth.”

The failure of the audio beacons has opened up other conversations.

Could bone-conducting headphones be used? Or maybe vibrotactile feedback – the sensation of vibration – by having a device placed on someone’s skin where the noise could be felt?

Mary’s experiment gave her permission to cartwheel.

She wanted to prove she could station keep – manoeuvre around the cabin safely – with and without her prosthetic leg.

“I was able to let my leg go, just let it fly. I had this moment of flipping around, doing cartwheels. And that was such an amazing experience,” she says, proving prosthetic limbs don’t hold anyone back.

While Mary and Sina are part of the first disabled crew to go on a parabolic flight, they are not the first individuals.

In 2007 Stephen Hawking described the experience as “true freedom” and this September Hayley Arceneaux was one of four civilian astronauts to fly aboard SpaceX’s Inspiration4. She has a titanium thigh bone having survived childhood bone cancer.

Another astronaut, Rich Clifford, was diagnosed with Parkinson’s shortly before his third space flight – but it was not widely disclosed.

Mary says: “Nasa, and from a government standpoint, have never picked anyone with a disability. They always have had these very strict standards.”

“And these standards aren’t safe,” Sina adds. “Nasa is doing a disservice to humanity and also to astronauts themselves by not considering inclusion upfront. When you get a group of people with diverse abilities together the sum is greater than the parts.”

It is something Nasa utilised in the 1950s, when it recruited 11 men from Washington’s Gallaudet University – for the deaf and hard of hearing.

Most had acquired their deafness through meningitis, which damaged the vestibular system of their inner ear making them “immune” to motion sickness.

They took part in a variety of experiments to report their physiological and psychological experiences of movement including weightlessness.

One experiment took them to the choppy Nova Scotian seas. While the scientists became violently ill, the Gallaudet Eleven played cards.

Sina believes “ableism” is what is holding the industry back.

“There’s this built-in belief that persons with disabilities are somehow less than and therefore all of the other considerations aren’t brought to the table,” he says, saying that needs to stop.

Mary says there are simple ways to increase inclusion. Astronauts speak several languages, so why not make American Sign Language (ASL) one of those?

Some of the crew signed during the mission, but interpreting the words was difficult when people were floating upside down.

Solutions are already being bandied about – perhaps a drone could detect signs and display them the right way up for the receiver?

It’s food for thought.

Next time, Sina personally wants to explore “the sonification of a gyroscope,” where sound and vibration could give him a sense of movement in a particular direction.

He says flight suits could have these features built-in, benefiting everyone, not just blind astronauts.

“Mary will be looking at something and doesn’t need to glance up to know that she’s actually experiencing a little bit of spin, because her left hip is vibrating.

“We need to get away from thinking of this as that which is done in excess. These are necessary considerations that we simply haven’t been making yet.”

Mission Astro Access isn’t alone in this space race. The European Space Agency called for six para-astronauts earlier this year and disability advocate Eddie Ndopu has signed several NDA’s about space travel.

Having returned to earth, Mission Astro Access’ 12 ambassadors will now also “rethink life on earth” and encourage greater inclusivity within the science, technology, engineering, and mathematics (STEM) sectors.

“The thing that resonates with me the most is that we really don’t need many accommodations,” Mary says, whose mind often drifts back to October.

“Every single night I lay in bed and I just try and remember that feeling of complete weightlessness. It’s a feeling I know I’ll be chasing for a long time.”

London Bus Driver Refused To Take My Disabled Daughter

December 10, 2021

A woman says she was left feeling “ridiculed and belittled” by a bus driver who refused to let her young disabled daughter board.

Mother-of-five Tameika Pieternella often travels by bus in Abbey Wood, south-east London, with two-year-old D’Naiyah, who has brain damage.

She says the driver would not get out a ramp for her daughter’s buggy-style wheelchair, while another simply drove off, leaving them at the bus stop.

Transport for London has apologised.

Louise Cheeseman, TfL’s director of bus operations, said: “We are very sorry that Ms Pieternella and her daughter have experienced this.

“We would like to reassure her that making travel easier for Londoners with reduced mobility is one of our top priorities. We have one of the most accessible bus networks in the world and all bus routes are served by low-floor vehicles with an access ramp and dedicated space for wheelchair users.

“Bus drivers have received accessibility training and these incidents should not have happened.”

‘Better training needed’

Ms Pieternella says she had to explain her daughter’s condition to one driver before he agreed to get out a ramp for them to board.

D’Naiyah is not able to walk or talk, is registered blind and needs her buggy to get around, said Ms Pieternella, who is offering to help TfL retrain bus drivers to better understand the difficulties of caring for disabled children.

“I’m willing to be a part of a retraining process where I could take my daughter in her chair so drivers can become familiar with different types of wheelchairs,” she said.

“The drivers I’ve dealt with clearly only consider wheelchairs to be the ones with the big wheels at the side. [The experience] made me feel ridiculed and belittled.”

On one occasion, she said, a driver refused to get out a ramp for the buggy as he believed “it was not needed”.

“Instead of letting the ramp out, he shut the bus door and just left us there. I was so hurt because I don’t understand why these drivers are so mean,” Ms Pieternella said.

“I said to one driver: ‘If I was a white mother with a white child would you still be treating us like this?’ And that’s when he finally let the ramp down.”

Ms Pieternella said these experiences had upset her other daughter, who is nine.

“My daughter asks me: ‘Why do they treat us this way, why don’t they want to let my sister on the bus?'”

Due to the difficulties she has experienced, Ms Pieternella says she now has serious anxiety attacks whenever she has to use the bus.

“I don’t know what kind of driver I’m going to come in contact with,” she said. “Don’t get me wrong, some drivers are really nice but they should all be because they’re dealing with the public.

“My daughter’s disabilities do not give anyone the right to discriminate against her. It needs to stop.”

TfL said it was raising the matter with bus operator, Arriva.

“We will invite Ms Pieternella to a meeting with Arriva where we will be ensuring everything is being done to prevent this from happening again,” TfL said.

“We will also help Ms Pieternella access our Mobility Aid Recognition Scheme card, which helps to signal to bus drivers that the customer is using a mobility aid and the ramp should be lowered.”

Autism: ‘Free Nursery Care Not Available To My Son’

December 9, 2021

A woman whose son has autism has said children with additional needs are being discriminated against as they cannot all access free nursery care.

Rebecca put three-year-old Jack in a private creche as mainstream nurseries could not cater to his needs.

Bridgend council offered her 12.5 hours of funded private childcare, but she has to top up more than £200 a month.

It said full-time education or special packages were offered for children with extra needs in mainstream schools.

Rebecca said she waited 15 months for Jack’s diagnosis after noticing something was different.

He struggles with loud noises, can be triggered by flashing lights and has “meltdowns” which sometimes have no trigger, said Rebecca.

In Bridgend, children are eligible for free nursery education from the age of three.

If working parents wish to put them in private nurseries, they can apply for the Welsh government’s Childcare Offer, which provides 30 hours of free early education and childcare a week.

Rebecca, who is currently training as a teacher, does not qualify for the full amount and said the current system was unfair on families with children with additional needs as public-run nurseries cannot cater for all disabilities.

‘Disability discrimination’

Rebecca said it “doesn’t seem fair” that Jack will not be entitled to full childcare support in a creche that meets his needs just because the free nurseries available to him cannot support him.

She said: “If he wasn’t autistic and didn’t have the needs that he has then he would have a full-time place in the school and we wouldn’t have to pay any additional fees to top up, but Jack needs to go there to progress.

“It feels like disability discrimination as it’s not Jack’s fault.”

Rebecca added that was part of a wider problem with education and support around autism.

“Jack is such a happy boy and his differences make him such an interesting character so I’m excited for his future, but I am worried more about society and what society needs to learn to make life better for Jack too,” she said.

“It can be extremely challenging when Jack has a meltdown and it limits what we can do as a family and the places we can go because a lot of places aren’t equipped for children with autism.

“It has left us feeling frustrated and still lost.”

‘Fighting for support’

Rebecca said they had longed for a diagnosis to finally have something to help get the support Jack needs.

But she added the most frustrating part was that even with the diagnosis, they were still no further forward in getting the help they were “desperate for”.

She said while she has been offered online support, it was “extremely difficult” for Jack.

“It is very hard to get him to engage as he needs to be in a room with someone, so although he has had some support it hasn’t made an ounce of difference,” she said, adding that she is “fighting for face to face support”.

Rebecca said she and her husband had been forced to do their own research and reach out to other families to make sure Jack gets the support he needs as early as possible.

“It makes you feel less alone but I have learnt more from them than I have [from] the professionals because you just don’t get that from them,” she said.

‘Even harder during pandemic’

Chris Haines from the National Autistic Society said: “Unfortunately, stories like Rebecca and Jack’s remain all too common in Wales.

“Parents across the country often tell us they have struggled for many years to get the right support in place to meet their child’s needs.

“This has become even harder during the pandemic which has had a disproportionate impact on autistic people and left many families feeling completely stranded.

“It is vital that autistic children receive timely early-years support, so councils must ensure their needs are prioritised and properly addressed in recovery plans.”

A Bridgend County Borough Council spokesman said: “The local authority offers full-time education for some nursery pupils with additional learning needs in mainstream classes or in specialist provisions attached to mainstream schools.

“However, full-time nursery education is not suitable for all nursery pupils with complex, additional learning needs and therefore, specialist packages, tailored to meet individual needs are offered.

“All specialist packages are monitored on a regular basis to ensure they meet each child’s needs.”

A Welsh government spokesperson said: “In addition to the Childcare Offer, funding of around £1.5m is made available to local authorities each year through the Childcare Offer for Wales Additional Support Grant to help fund additional childcare costs and ensure eligible children with additional needs are able to access the childcare element in the same way as other eligible children.”

Strictly Come Dancing: Deafness ‘Not A Barrier’ To The Arts

December 9, 2021

The success of actor Rose Ayling-Ellis in this season’s Strictly Come Dancing is shining a spotlight on an “invisible disability”. Two teenagers are hoping to follow in her footsteps.

Strictly star Rose Ayling-Ellis is inspiring more deaf young people to pursue careers in the arts.

The EastEnders actor, 26, is the first deaf contestant in the show’s history.

Her popularity has also sparked a surge of interest in sign language courses.

And as she dances her way into the quarter finals, Ms Ayling-Ellis is showing young deaf people that “deafness is not a barrier”.

Student Ella, 16, from Burnham-on-Crouch, Essex, said Ms Ayling-Ellis had “changed perspectives about deaf people”.

“Deafness is an invisible disability,” she said.

“People are seeing her every Saturday night, a deaf person being amazing. It’s so positive – it’s not scripted.

Ella, who has ambitions to work in theatre, directing and writing, lost her hearing when it began to deteriorate at the age of 11. She also wants to become the first deaf fight scene co-ordinator.

“I grew up with that hearing experience – now I’m profoundly deaf I feel I have two perspectives on this.

“It’s the first time I’ve seen a deaf person in that kind of reality show. She’s not playing a character, she is showing herself as a deaf person and it’s beautiful.”

Scarlet, 15, from Borehamwood, Hertfordshire, who wants to become a teacher, turned to dance during lockdown as a “way to escape and take the stress away”.

She said the Strictly moment where Ms Ayling-Ellis and her partner Giovanni Pernice danced in silence “had real impact”.

“I always say that when I take my hearing aids off there’s silence and nothing else – and that dance made people realise what it can go from,” she said.

Scarlet was born without outer ears – a condition called bilateral microtia.

“Rose has inspired me in many ways, you can be who you are – even because you have a hearing loss – you can be yourself,” she said.

‘It doesn’t have to be a barrier’

Martin McLean, of the National Deaf Children’s Society, said being deaf “doesn’t have to be a barrier”.

“For deaf young people it’s really important to see someone who’s deaf like them doing well,” he added.

“Being deaf hasn’t held Rose back, she’s out-performing her hearing peers.

“Often deaf children are the only person in their family, or school or college, who’s deaf. There’s a lack of role models. It’s inspiring to for them to see Rose talk so positively about being deaf.

“It doesn’t have to be a barrier – they can achieve whatever they want to.”

Mental Health: Deaf People Frustrated Over Access To Help

December 8, 2021

Deaf people are twice as likely to suffer mental health problems than those with hearing, a report has found.

The All Wales Deaf Mental Health and Wellbeing Group said help in Wales was behind the rest of the UK and it wants to see significant improvements.

It also described the inequalities faced by deaf people trying to access mental health support as “really frustrating”.

The Welsh government said it would consider the findings of the report.

Ffion Griffiths, 23, from Neath, has been deaf since birth, and accessing child and adolescent mental health services in Wales has been a problem over the years. She had to travel to England to get the support she needed.

“It’s really frustrating because deaf people in England have more opportunities,” she said.

“It means they can be treated and get better quicker but for us, how can we do that?

“How can we expect to recover if we don’t have access to the services or any pathways for us to follow to get the treatment that we need in Wales?”

The All Wales Deaf Mental Health and Wellbeing Group has compiled a report of deaf people’s experiences of trying to access mental health support.

Julia Terry, a former mental health nurse and associate professor at Swansea University, has helped put together the report, which calls on the Welsh government to take action.

‘Loneliness and isolation’

“We know people who are deaf often have fewer educational qualifications, lower employment rates, and increased levels of loneliness and isolation, and that’s why they’re more likely to develop mental health problems than hearing people,” she said.

“What we’ve had in the past has been a few satellite service where staff from Manchester, London and Birmingham have come into Wales for a short period, but a lot of those services have dissolved.

“So people who needed hospital care have had to travel many miles away from their families and friends and have effectively been somewhere with limited support.

“We need to be doing far more in terms of supporting people who are deaf, in terms of promoting positive mental health but also a service that is accessible, run by staff who have increased deaf awareness in order to provide a supportive and safe service for deaf people in Wales.”

According to the British Society for Mental Health and Deafness, Wales is the only UK country which does not provide a clear service to meet the needs of deaf people experiencing poor mental health.

Members of Wales’ deaf community say they want to see primary care staff have an increased knowledge of available mental health services for deaf patients, basic training around deaf issues for all health and care workers, and an accessible helpline and signposting service.

As well as being deaf herself, Cathie Roberts-Talbot provides mental health training to the deaf community.

“Deaf people living in Wales should have the support in Wales – not having to go over the border to England,” she said.

“You should have equality and access to information but at the moment, as a member of the deaf community, I don’t feel that.”Media caption, Social isolation, anxiety and stress are some of the most prevalent issues facing the deaf community, according to the survey

She added: “Our biggest concern going forward is that people need more mental health services and if there isn’t that provision in Wales longer term, it’s going to be more difficult and problematic for the deaf community because that early intervention isn’t going to happen.”

A Welsh government spokeswoman said: “We will consider the findings of this report as we implement our Together for Mental Health strategy and framework of care and support for people who are deaf or living with hearing loss.”

Disabled Dumfriesshire Driver Makes Electric Charging Point Plea

December 8, 2021

A man with a rare muscle-wasting condition says poor electric vehicle infrastructure risks seeing disabled people being “left behind”.

David Gale, 38, from Templand near Lockerbie, has Becker muscular dystrophy.

He said he would like to make his next car an electric one but said too many charging points were unsuitable.

Transport Scotland said ensuring accessibility for all was a “core part” of the Scottish government’s approach.

Mr Gale said some charger bays were too small to allow him to open a door to get into a wheelchair.

He also cited the lack of dropped kerbs and the chargers, charging sockets and cables being too high or too heavy as other issues.

Mr Gale’s condition causes muscles to weaken and waste over time, leading to increasing and often severe disability.

He requires assistance with mobility and currently drives an adapted Vauxhall Astra.

He is due a new vehicle next year under the Motability scheme and would like it to be an electric one but has concerns about infrastructure.

“I don’t want to be desperately needing to charge my car only to reach a charging point that I can’t use because it hasn’t been designed with disabled people in mind,” he said.

“It feels like I’m being discriminated against.

“All charging points should be accessible in the first place, otherwise decades down the line more money will have to be spent to correct them.

“As the 2030 ban on the sale of new petrol and diesel cars approaches, it is imperative that disabled people aren’t left behind.”

Robert Burley, of Muscular Dystrophy UK, said Mr Gale’s situation highlighted how often disabled people were treated as an “afterthought”.

‘More accessible’

Transport Scotland said all chargers supported by the Scottish government had to meet the requirements of its good practice guide.

It said that meant that installations should take account of duties set out in the Equalities Act including issues such as markings and dropped kerbs.

Transport Scotland added that it was working in partnership with Scottish Enterprise to improve the design of electric vehicle charge points to make them “even more accessible”.

It is also working with the Department for Transport, Motability and the British Standards Institution on the development of accessible vehicle charge point standards.

A set of advisory standards is due to be developed by summer next year providing specifications for installers and operators in Scotland and across the UK.

Secret Algorithm Unfairly Targets Disabled Claimants For Fraud Investigation

December 7, 2021

With many thanks to Benefits And Work.

Greater Manchester Coalition of Disabled People (GMCDP) says disabled claimants are being unfairly targeted for fraud investigations by a secret algorithm and forced to fill in forms over 80 pages long.

The group, supported by tech action organisation Foxglove has issued a letter before action to the DWP asking how the algorithm works and what is done to eliminate bias so that disabled claimants are not unfairly investigated.

GMCDP say that a huge percentage of their group has been hit by the investigations make long and frustrating calls to call centres, dealing with confusing phone menus and unhelpful operators with no training to assist disabled and vulnerable people.

Others must fill in forms of over 80 pages that ask the same questions again and again.

The group says that disabled claimants are forced to repeatedly explain why they need payments in an aggressive and humiliating process that can last up to a year.

The Manchester coalition have so far crowdfunded just over £4,000 of a £5,000 target using the Crowdjustice platform to help them meet the legal costs of challenging the DWP. There is a deadline of 31 December to raise the rest of the funds.

 

 

 

Rachel Gadsden: ‘What I Lost In Sight I Gained In Imagination’

December 7, 2021

An artist whose career has thrived despite dealing with major sight loss has encouraged others with serious eye conditions to pursue their passion.

Rachel Gadsden, from Loughborough, was diagnosed with retinoschisis – a disorder that splits the layers of the retina – 15 years ago.

Now she hopes to use her profile to provide encouragement to other people dealing with a visual impairment.

She said what she had lost in sight, she had gained in imagination.

“I remember the first moment I was told I had quite a serious eye problem and that it was going to have to be seriously investigated,” she said.

“It was like I’d been punched in the chest, it was quite terrifying.

“I came home and made a sculpture in my studio with my eyes closed because I was thinking ‘how’s all this creativity going to come out in another way?’

“Then one day I realised you get on with this or you give up – and I was not going to give up.”

Since then she has exhibited internationally across the mainstream and disability art sectors, winning multiple awards along the way.

“People ask how do I see,” she said.

“I think it’s like swimming under water – sometimes you can see a little bit and sometimes you can’t see anything at all.

“But what’s interesting is although I might see less and it’s all blurred, my imagination has completely gone through the roof.

“So I feel like I see the world in a far more beautiful way and that’s what I hold on to.”

Now she is working with healthcare firm Roche on a campaign, which aims to raise public awareness about sight loss and help to encourage those who have experienced it.

Ballet Dancer Joe Powell-Main Seen As ‘Wrong Type’

December 6, 2021

“Coming back to [dance] with a disability, a lot of people… see me probably as the wrong type of dancer doing ballet.”

Despite being Wales’ first professional ballet dancer with a disability, Joe Powell-Main has faced some judgements.

The 23-year-old has returned to dance from injury and uses his wheelchair and crutches to perform.

He said it should be easier for others like him to enter the profession in future.

Joe, who is from Newtown in Powys, has danced since he was a child.

But while he was training at the Royal Ballet as a teenager he suffered a series of injuries, leaving him with long-term damage to his left leg.

The injuries left him depressed as dancing had been his world since he was a child.

After three years he wanted to start dancing again, but found it difficult to be accepted in the ballet world.

‘I’ve had people making snap judgements’

“I’ve had people making snap judgements and be like: ‘You’re in a wheelchair, you use crutches, so how are you going to be able to do dance?’,” he said.

“It can be quite difficult to navigate.”

He said his movements don’t necessarily conform to the strict rules of what people should expect, but that does not mean it is not ballet.

‘What I’m still doing is ballet’

“Sometimes it doesn’t look like conventional ballet – people in point shoes, legs up by their ears… but there needs to be a willingness to look beyond that and see that its different,” he said.

“What I’m still doing is ballet, I’m just sitting down or I’m using my chair or I’m using my crutches to assist me to be able to do things, just in a different way.

“I think if people can look beyond that and see that there’s something there that you know, that can be taken forward and hopefully there will be more dancers like me.”

‘I need to crack this for others’

The 23-year-old refers to himself as “differently abled” rather than disabled because he said it “adds a stigma that people think: ‘Oh, well you can only do this'”.

Joe believes he is the first such dancer to have a professional contract with a ballet company.

But he said it has been a difficult journey and he wants opportunities widened for others.

“For me to be able to get the balletic movement again, even though it was in my wheelchair, spurred me on – I was like right there’s no one else like me so I need to crack this for other people as well.

“Even now it can be quite difficult to navigate, but I think unfortunately that comes with the territory and if change is to happen, that is something I need to go through, for me and everyone coming after me as well.”

He’s twice been UK para-dance champion performing with his sister, and also performed with the Royal Ballet at the homecoming event for the Paralympics in September.

‘Beautiful and diverse’

Joe has also just completed a UK tour of Giselle with Ballet Cymru, a Newport based company which wants to change perceptions of ballet.

Its artistic director, Darius James, said the ballet world needs to change and see it as a “beautiful diverse ballet” as the dance was 80 years ago.

“I would ask [people] to come and see Joe on stage and our entire company on stage and look at the diversity and see that it actually is ballet that if you take it back to the roots of ballet,” he said.

Ballet Cymru also has a programme to encourage young people from more diverse backgrounds into ballet.

Amy Doughty, who organises the project, said it is so those with different levels of physical ability, less affluent backgrounds and different body shapes all feel ballet is for them.

“It’s about talent and we know that talent is everywhere and we only see such a small proportion of that talent because historically its only been accessed by a small group of people,” she said.

Gavin Clifton: Author With CP

December 6, 2021

An author with cerebral palsy who fulfilled his dream of writing a children’s book said he hoped it could help young people “be themselves”.

Gavin Clifton, 39, from Caerphilly County, wrote Max and the Magic Wish about a boy with cerebral palsy who wishes to be like other children before starting school.

Mr Clifton wanted the message that it is OK for children to be different.

He said he hoped it could go against the negativity on social media.

Mr Clifton, who lives in Pentwynmawr near Newbridge, was was expected to never walk, talk or go to mainstream school due to his condition.

The severity of symptoms can vary significantly with cerebral palsy, from minor issues to severe disability.

Mr Clifton now walks and drives and can speak through a specialist machine.

He said he wanted to show others what people with disabilities can do: “As I have gotten older I thought to myself ‘what would my life be like if I wasn’t disabled’ but I can in all honesty say at this moment in time I wouldn’t change a thing.

“The person you become is the most important thing and not your disabilities because you learn to adapt your life in your own way and I want to show children and others with disabilities that being yourself is always the best way to be and never stop following your dreams.

“It has always been a dream of mine to write children’s books and if I can educate more people and inspire them whilst making a difference to their lives I would be so happy. It would be my biggest achievement yet.”

Mr Clifton said he wants it to go against “keyboard warriors” trolling people with disabilities on Twitter and Facebook.

He said: “The good side of these platforms is that they allow us to showcase the different types of disabilities and how disabled people can prosper and make a difference in our society but there is also an ugly side in the online abuse disabled people get.

“I have suffered abuse from keyboard warriors myself but the best advice I can give is to never bite back and let go of all the horrible comments and let them go over your head.

“This is the reason that I wrote Max And The Magic Wish – never let people try to tell you any different.”

The author’s father Martin Clifton said: “The doctor said he would never walk, probably never talk because of his cerebral palsy that affects one side of his body.

“As parents you have got to adapt as there was not the facilities that are about today. I am just so proud of him.”

Illustrator and publisher of Mr Clifton’s books, Clare Thomas, said working with him was “an absolute honour”.

She said: “He doesn’t let anything stand in his way.”

Mr Clifton released his second book, Paddy the Polar Bear, on Friday and said he had no plans to stop any time soon.

THE BENEFITS OF OUTDOOR MUSIC FOR PEOPLE WITH DISABILITIES 

December 3, 2021

A press release:

To celebrate International Day of People with Disabilities on December 3rd, Percussion Play is highlighting the benefits of music, particularly outdoor music, for people with both physical and mental disabilities.

Outdoor musical instruments are helping people with physical disabilities to create music without limits and by locating these instruments in an accessible, open, outdoor setting, this helps to reduce the many obstacles people with physical disabilities face in their daily lives.

As well as improving access, playing outdoor musical instruments has been proven to induce multiple responses – physiological, movement, mood, emotional, cognitive and behavioural and there are very few other stimuli that have such a profound positive impact on such a wide range of human functions and emotions.

Playing outdoor musical instruments enables children to improve their gross motor skills because they are encouraged to use full-body movements. 

When playing larger instruments there is a positive impact on core stability.  The right side of our brain controls the muscles on the left side of our bodies and the left side of the brain controls the muscles on the right side of our bodies. When we cross our midline with our arms or legs, we boost communication between the two hemispheres of our brains. For children to become confident with movements that cross the midline, we need to encourage the brain’s two hemispheres to work together.

Playing outdoor musical instruments also encourages the use of fine motor skills and improves hand-eye coordination as the child has to hold a beater or mallet and hit the instrument in a specific place to make a sound.

Children who have a disability that impact their education, often find it difficult to engage in a classroom setting but being able to create music outside can help children with learning difficulties engage and enjoy lessons. 

Having large, brightly coloured outdoor instruments which vary in shape and are visually varied can encourage children with learning difficulties to engage and explore whilst promoting imagination. 

Percussion Play is the world-leading manufacturer of outdoor musical instruments and is seeing an ever-increasing interest in their inclusive outdoor instruments, with record sales this year.  

Percussion Play has created a range of beautiful outdoor musical instruments which are played across the world’s schools, libraries, parks, hospitals and senior living communities.  From the popular Calypso Chimes to the Harmony Flowers., Percussion Play’s instruments are designed to bring people together to create uplifting music.

Jody Ashfield, Founder and CEO of Percussion Play said: “We are proud to recognize and support this year’s International Day of People with Disabilities. Percussion Play support the 2021 campaign of ‘Fighting for rights in the post-COVID era’ and hope to encourage everyone to be able to create music without limits.  We hope our accessible outdoor instruments can help remove barriers for people who live with disabilities and help encourage more people to create and enjoy music in the great outdoors”.

You can read more research on the benefits of music for those with disabilities here.

Youth Parliament: How Seth Burke Is An Unwitting Political Pioneer

December 2, 2021

He has already learned to ride a trike after his parents were told he wouldn’t – and now Seth Burke is preparing to be an unintentional political pioneer.

The 13-year-old will become the first person to use a wheelchair to be sworn into the Senedd as one of 60 elected into the Welsh Youth Parliament.

Seth suffers from rare muscle wasting condition Duchenne Muscular Dystrophy and will meet fellow members next year.

He wants to use his position to help shape future Welsh policies.

“I think I’m the first in the Senedd with and I want to set an example to other children in Wales to follow their dreams,” said Seth from the Vale of Glamorgan.

“I think that sometimes because it’s been difficult for me, I want to make it easier for everyone.”

Seth has never allowed his lifelong progressive condition hold him back and now the scout from Dinas Powys wants to inspire other people with disabilities to help shape their county.

A few years ago he performed a duet with his singing idol Dolly Parton on her famous song Jolene on a Caribbean cruise with his family, now he’s using his voice to a different effect.

“I want to do stuff like work with mental health and I also want to help the environment, because the climate struggle is getting bad,” said Seth, a student at St Cyres in Penarth, the former school of paralympic legend and House of Lords peer Baroness Tanni Grey-Thompson.

Seth is already trying to make a difference to people’s lives and has taken part in medical trials, in the hope of helping others with his condition.

And as a member of the council for his school year, he helped come up with ‘Wellness Wednesdays’ and had ideas about how to make online learning less intense for pupils at the height of the pandemic.

“He’s not shy in coming forward with an idea,” said head teacher of St Cyres Simon Morris.

“They are very mature ideas and they are wonderful and he will sit and listen to the views of others, and is respectful, but he’s not shy in saying if he thinks things can be done better.”

Seth will be the first wheelchair user to have a voice at the Senedd and discussions are being held there about possible rules to ensure political parties select a certain number of diverse candidates at future elections.

That’s so people with disabilities and people of different races, backgrounds, genders and age groups are represented.

“We need to work harder as a Senedd to make sure we are fully representative of the people of Wales and the youth parliament is showing us the way to do that,” said Senedd presiding officer Elin Jones.

The latest cohort of Welsh youth parliamentarians will formally take their seats in the new year when they meet each other in person for the first time at the Senedd and begin their time representing 11-17 year olds.

Nearly 300 candidates stood for 60 Welsh Youth Parliament seats and thousands of votes were cast by young people during a three-week campaigning period.

Some 40 constituency seats were decided by the online ballot with 20 members selected by organisations as the Welsh Parliament wanted representation from diverse groups of young people – and Seth’s name was put forward by Ty Hafan children’s hospice, where he receives care.

“No one goes out of their way to be obstructive or not support these families,” said chief executive Maria Timon Samra.

“But often that lack of understanding is there and we advocate very heavily on their behalf, but I think it will be very powerful for Seth to be able to do that from a lived experience.”

During their term until 2023, the members will focus on their main priority issues raised by candidates and young people around Wales.

The idea is that by meeting regularly, consulting with young people and conducting inquiries, members of the youth parliament will discuss the issues that matter most to young people and lobby elected politicians in the full Welsh Parliament.

Treasure Island Review – BSL Production A Sign Of Progress

December 2, 2021

While this is a sometimes flawed production, with an occasionally uneven pace and a script that could do with more depth, its importance should not be underestimated.

Derby theatre artistic director Sarah Brigham is at the helm of this ship, stuck in the harbour last Christmas, finally setting sail this festive season.

What makes the production quietly revolutionary is its integration of British Sign Language and captioning. Brigham is a hands-on in-the-community kind of leader and staging this production in a city that, she says in her programme notes, has one of the largest deaf populations in the country outside London, is an excellent flag planted. That there were a number of people communicating via sign language in the auditorium seats is a testament to the vision.

The story itself is largely well served. Jim Hawkins becomes a young woman, Gem Hawkins, as in Bryony Lavery’s National Theatre adaptation, one of a number of roles played by two actors on stage together. It is an intriguing decision to have some characters double like this; the soul of Oraine Johnson’s Captain Flint is manifest on stage by Becky Barry, but the script never gets under the skin of why.

The question doesn’t get in the way of a joyous production and having two Gems for the price of one when they are as engaging as the two actors here – deaf dancer and actor Raffie Julien and April Nerissa Hudson – is a bargain. Both have the ineffable quality of connection with the audience that is vital for all shows, but especially at Christmas. Capturing a wide-eyed innocence and joy of adventure as they set off aboard the Hispaniola (the BSL for which is beautiful) as the avatars of the young audience members, they are both perfectly cast.

The show is almost stolen by Nadeem Islam who, as Trelawney, gives an irresistible comic turn and Alex Nowak as Ben Gunn is amusingly surreal.

This production will tighten over the run, ironing out one of the flaws, but half the applause here belongs to a greater cause.

What It’s Really Like To Work In TV As A Disabled Person

December 1, 2021

While there has been improvement in disability representation in recent years, it’s still common to switch on the TV and only see non-disabled people. In the UK, 22% of people have a disability, yet disabled talent makes up just 7.8% of the people we see on screen and 5.2% behind the camera.

The Guardian has spoken to a number of disabled professionals to hear what it’s really like to be disabled in British TV. Some are famous faces; others work behind the scenes. Here, five disabled people tell all.

The presenter

When you’re being used for entertainment as a disabled person, you feel no better than a freak in a circus show. When I started out in television, as a person with a visible disability, I was asked so many invasive questions. One director asked me if I had sex with my mobility aid.

I have gone without food and water on location for fear of an accident when there are no disabled facilities. I have guzzled painkillers to keep up with the long hours and run myself into the ground with call times that never take into account that my body isn’t the same as everyone else’s.

I was once passed up for a job, and when I was told about it, the executive said: “Not to worry, we will always need ‘wheelchairs’ on TV.” In the past, I’ve been asked to work for free, and yet the crew around me – all non-disabled men – weren’t. There’s no one to turn to when you feel discrimination; it is considered part of the job.

It’s no secret that people like me are used to tick boxes. If someone has a meeting with us, even if that meeting doesn’t go anywhere, it counts towards a diversity and inclusion quota. Tokenism is rife. It’s very hard for your mental health. I see other minority groups being given air time and creating cutting-edge content, but disability is still poorly represented.

I have only recently started to notice disabled people working around me, but rarely in roles of authority. TV has a responsibility to educate the wider public. But how can it when the people at the top have little to no lived experience of being disabled themselves?

The producer

I’ve had moments of despair in my job – the hundreds of times I’ve not been able to go to the toilet because I can’t find an accessible loo. It’s basic but it is never thought about.

Often, when I meet someone for the first time they make snap judgments, from assuming I’m on work experience to never directly addressing questions at me. It’s not their fault, but it takes its toll and is exhausting. I have to work harder and faster than my non-disabled peers just to be considered an equal. I’m pretty sure I’m the only person with a visible disability working in my role in my industry.

People rarely ask what support I may need, perhaps because they’re embarrassed or feel awkward. I have lost out on jobs because they are not accessible. The offices are upstairs with no lift, and they are not able or willing to move them downstairs.

But I’ve also been offered opportunities that as a child I could never have dreamed of, and that is mainly down to getting to work with some brilliant people. People who will do whatever is needed to make my environment as accessible as it can be.

The actor

I’ve been acting in television for 25 years. I remember early in my career I was on an ITV series’ read-through that included a wheelchair-using actor, but it was on the third floor of an inaccessible building. No one mentioned it. When I tried to ask an assistant producer how he was going to attend, the wheelchair-user told me to be quiet. He didn’t want to be known as a troublemaker. It was a reflection of a cruel time.

There have been great moments, too. In 2011, I got six weeks on a big Irish soap. I was equal, had respect, no one questioned anything about my impairment. I did the first ever kiss between a non-disabled and disabled character on Irish telly, and the whole thing was an oasis. Around the same time, some people I know had a meeting to pitch a Christmas drama about a wheelchair-user and their family. The TV exec turned it down. “No wheelchairs at Christmas,” they said.

But we’re not treated like special aliens any more, or as if people are doing us a favour by putting us in their work. The advent of disability storylines actually written by disabled writers has inevitably meant great improvements. These days it genuinely feels that we belong there as much as anyone else.

The performer

Midway through my career, I got a coveted place on one of the main broadcaster’s diversity schemes. I was there as a disabled person and a gay person – a double whammy for the tick boxes. The “prize” was a paid entry-level job at a prestigious production company. My first placement was in the development team, comprising five young guys and one older bloke closer to my age. On my first day, after a reluctant “hello”, communication was kept to a minimum. That continued for the entire time. We were in an open-plan office, all sitting face to face along a two-metre desk. There was no ignoring me, the only wheelchair-using woman at the table. But they did ignore me. They rendered me invisible. I was never invited out for lunch or to the pub. I’d eat alone or with my PA, and my anxiety shot through the roof. The manager who’d placed me there suggested it was my responsibility to fit in better. After my year with that company, I urgently needed mental health treatment. It was the worst year of my life.

Later, I found out why I was treated so badly. I had been allocated a place at the communal desk because it had easier access for my wheelchair. That space had belonged to the older bloke in the team, who wasn’t happy he’d had to give up “his” desk for a disabled newbie. He encouraged the others to shun me.I decided never to work in an office again.

The director

One of the reasons I started in television was because I never saw people like me. Little did I know I was setting myself up for a lifetime of frustration. I’ve worked in telly for more than 20 years and have seen my non-disabled peers surpass me at every turn.

I spent my early years crisscrossing between disabled and mainstream television, often in tokenistic roles. In mainstream TV, I have to fight for every reasonable adjustment I need – and frequently lose. Once, I was given a desk space removed from the rest of the team, which meant I was often out of the loop. I asked why I wasn’t invited to senior external meetings and was told it was because there wasn’t room to house me. One well-meaning colleague asked if she could send my medical history round the team so they’d have a better understanding of how to work with me.

We’ve had a senior-level person say the only reason we got a commission was because our programme was a public service and therefore it was their “duty”. Whenever disabled talent is mentioned they’re always too niche, too boring or don’t look “disabled enough”/look “too disabled”. There’s sexist and racial bias, too. Time and time again I’ve been passed up for jobs in favour of a white disabled male – often someone “less” disabled than me. It’s worse for disabled women of colour.

For every television bully I meet, there are 20 others who will one day champion me and other disabled people up to senior levels. But I won’t lie: the waiting is hard and it erodes your self-worth.

Over the past couple of years I’ve seen change coming, but it’s incessantly slow. Disabled people are starting to push back and say this isn’t good enough, and it feels like broadcasters are starting to listen. We need disabled people visible at every level: directing, commissioning, running, balancing the budgets and dazzling onscreen. When that happens, it will be magical.

Oscar Pistorius: Reeva Steenkamp’s Parents To Meet Her Killer

November 30, 2021

Reeva Steenkamp’s parents are preparing to meet her murderer, the former Paralympics star Oscar Pistorius.

It is part of a process that could lead to his eventual release on parole.

The South African athlete has been moved to a prison closer to Barry and June Steenkamp to enable the meeting to go ahead.

Pistorius has served half his 13 years and five months sentence, handed to him for the 2013 Valentine’s Day killing.

The Steenkamp family lawyer has previously said the announcement he was being considered for release came as a shock, but that they were willing to participate in what the South African authorities describe as “restorative justice”.

As part of this, offenders are expected to speak to their victims or their relatives. They must also acknowledge the harm they have caused, the department of correctional services said.

He has been moved from a prison in the capital, Pretoria to one in the port city of Gqeberha, previously known as Port Elizabeth, in the Eastern Cape.

Pistorius shot his girlfriend Ms Steenkamp dead in 2013, saying he mistook her for a burglar at his Pretoria home.

He fired four times through a locked toilet door.

In 2014, at the conclusion of a trial that was followed around the world, he was given a five-year term for manslaughter. But Pistorius was found guilty of murder on appeal in 2015 and the sentence was later increased to 13 years and five months.

When the possibility of Pistorius’ release first came up earlier this month, the Steenkamps’ lawyer, Tania Koen, told national broadcaster SABC that they “would like to participate in the victim-offender dialogue”.

“June [Steenkamp, Reeva’s mother] has always said that she has forgiven Oscar, however that doesn’t mean that he mustn’t pay for what he has done… Barry [Steenkamp, Reeva’s father] battles with that a bit, but that is something he will have to voice at the appropriate time,” Ms Koen added.

“The wound, even though so much time has passed, is still very raw.”

The lawyer also told the UK’s Daily Mirror newspaper that the Steenkamps had received a letter from Pistorius which she described as being “emotionally distressing” for them.

According to AFP, social workers are expected to speak to the family before the meeting goes ahead.

The authorities have not said when the meeting will take place, simply saying “the timeframe… will be guided by the level of preparedness by all participants”.

The department of correctional services asked people not to put pressure on those taking part to reveal what was said.

Prior to the murder, Pistorius was well known as a Paralympic gold medallist. In 2012, he made history by becoming the first amputee sprinter to compete at the Olympics running on prosthetic “blades”.

His legs were amputated below the knee when he was 11 months old because he was born without fibula bones.

Online PIP2 Form Offered To All New Claimants From 6 December 2021

November 30, 2021

With many thanks to Benefits And Work.

 

Benefits and Work understands that the online version of the PIP2 How your disability affects you’ claim form is scheduled to be made available to all new claimants from 6 December, if everything goes to plan.

The digital PIP2 claim form is currently being offered to around 500 claimants a day.

However, all DWP staff dealing with new PIP claims are currently being trained on how to explain the online claims process to claimants. The training is expected to be completed by the end of this week, with the form being offered to all new claimants from 6 December.

Benefits and Work understands that take-up will be optional. You can still choose to be sent a paper form instead. The DWP have estimated that around 1,000 people a day will opt to use the online form.

Members can download a guide to the online PIP2 form from the PIP resources page. However, we don’t know what changes might have been made to the form since we last saw it. So if anyone does take up the offer and can email us screenshots of each page before you complete it, that would be extremely helpful. All help will be on a strictly confidential basis and you can contact us for suggestions if you are not sure how to take screenshots or how to forward them by email.

£2 Billion Bonanza For PIP And ESA Assessors And DWP Will Decide Percentage Of Phone And Face-To-Face Assessments

November 30, 2021

With many thanks to Benefits And Work.

The first details of the new assessment contracts for PIP, ESA and UC have been announced. The contracts split the UK into five regions, hand over £2 billion to the private sector over five years and allow the DWP to decide what proportion of assessments will be telephone or face-to-face, regardless of actual claimant needs.

Under the new claimant Functional Assessment Services (FAS) system, the UK will be divided into five regions from 1 August 2023:

Lot 1 – Northern England and Scotland 647,600,000

Lot 2 – Midlands and Wales 473,400,000

Lot 3 – South West England 338,000,000

Lot 4 – London, South East & East Anglia 396,800,000

Lot 5- Northern Ireland 105,100,000

In each region, a single company will carry out all the PIP, ESA and UC assessments.

The total value of the contracts is £2 billion, rising to £2.8 billion if the DWP chooses to extend the contract for an additional two years.

The Scottish government will be taking over PIP assessments itself in advance of August 2023, but there will be a few claims that are already underway which will still be dealt with by private sector assessors.

The bid winners will be paid for a 10 month ‘implementation phase’ during which they will have to get all their staff recruited and trained, acquire premises and set up IT systems before going live.

The DWP will provide one IT system for supporting PIP and a separate system for all other benefits.

However, bidders are warned that various changes may take place throughout the life of the contract.

These changes include alterations in the ‘channel mix’ as the DWP term it. 

What this makes clear is that it is the DWP, not assessment providers who will decide what proportion of claimants receive a telephone or face-to-face assessment.The document gives the example: “change in proportional requirements relating to virtual assessments and face to face assessments. For example, the requirement may change from 60% face-to-face to 20%’.

This means that assessment providers will be working to meet targets for types of assessment, regardless of whether that means that some claimants are obliged to have an inappropriate method of assessment.

You can read more details of the contract on the Find A Tender website.

Sir Frank Williams Obituary

November 29, 2021

Before the road accident that changed his life at the age of 43, Frank Williams typified the breed of fast-living, almost pathologically competitive alpha males who had graduated from the mostly amateur world of postwar British motor racing to dominate the sport at its highest level.

When Williams, who has died aged 79, lost the use of all four limbs after crashing a rental car while speeding from a circuit in southern France to a nearby airport one evening in the spring of 1986, his career as the driving force of a championship-winning Formula One team appeared to be over.

For several days he hovered on the brink of death. But tetraplegia was to prove no match for the will of a man devoted to winning, often against the odds. Thirteen years later, having added seven more constructors’ world championships and five more drivers’ titles to the pair of each secured by his team before the accident, he was knighted for his services to motor sport. The men who won the world title at the wheel of his cars were Alan Jones, Keke Rosberg, Nelson Piquet, Nigel Mansell, Alain Prost, Damon Hill and Jacques Villeneuve.

By that time his wheelchair, pushed by a carer, had become a familiar sight at the world’s racing circuits. Williams sat in the pits during the races and qualifying sessions, watching the computer screens that monitored his cars’ progress, his once expressive features now a largely inscrutable mask. The view of his rival team bosses was summed up in a remark attributed to one of them, Ron Dennis of McLaren, when it was announced that Williams would be returning to action despite the loss of physical functions: “Now he’s even more dangerous. All he can do with his time is think.”

Like Enzo Ferrari, Williams designed not a single nut or bolt of the cars that bore his name. Instead he functioned as a motivator, a strategist and a hustler who enjoyed making a good deal for his team almost as much as he loved seeing them triumph on the track. Eventually, in 2012, after the last of their 114 grand prix victories, he stepped back, handing over the frontline duties to his daughter, Claire, who had studied her father’s style and methods at close quarters for many years.

Williams was born in South Shields, now in Tyne and Wear, to Clare (nee McGrath), a teacher of children with special needs, and Owen Williams, who flew Wellington bombers in the RAF and left the family before his son was a year old. While his mother struggled to earn a living, much of the young Frank’s upbringing was consigned to his grandparents.

He was enrolled at St Joseph’s college, a Roman Catholic boarding school in Dumfries, where he was good at languages but spent most of his time studying motoring magazines. His mother had taken a job as a headteacher at a school outside Nottingham, and during his holidays Frank would often stay with a schoolfriend in Newcastle whose father was a car dealer. He learned to drive in the grounds of his mother’s school, taking the wheel of her Morris Minor before he was old enough for a provisional licence.

Earning a mere £3 10s a week in his first job, as a trainee with a vehicle distribution centre in Nottingham, he persuaded his mother to give him £80 to buy a hotted-up Austin A35 saloon with which, as a teenager, he entered his first races. It was while sitting on a trackside bank after rolling the car at Mallory Park that he struck up a conversation with Jonathan Williams, another young driver who had crashed at the same spot. Back in the paddock Jonathan introduced his new acquaintance to his friend Piers Courage, the Old Etonian son of the chairman of the Courage brewery.

After hitting a lamp-post and writing off the car on the way to the next event, at Oulton Park, Frank fitted some of the undamaged components into another Austin, an A40, and carried on racing. Dismissed from his day job after failing to attend a course, he worked briefly as a filling station attendant and as a trainee sales rep for Campbell’s Soup, which required him to wear a bowler hat when visiting clients.

His friendship with Courage and Williams drew him into a circle of ambitious young racers. Before long he was living at 283 Pinner Road in Harrow, north-west London, a house that had become a centre for their activities, where his penniless state meant that he frequently slept on a couch.

The group, who included Courage, Charles Lucas, Anthony “Bubbles” Horsley and Charles Crichton-Stuart, the grandson of the 5th Marquess of Bute, spent their summers hauling their racing cars from one continental circuit to another behind a variety of dilapidated vehicles and surviving on the starting money picked up from race organisers.

It was a picaresque apprenticeship in international motor sport, but Williams’s enthusiastic participation in the hedonistic life of the mid-1960s was balanced by an asceticism that encompassed his growing obsession with long-distance running and a lifelong avoidance of alcohol and tobacco.

A gift for deal-making enabled him to earn a living from buying and selling components for racing cars, and eventually complete cars. The proceeds subsidised not only his racing activities but also the Curzon Street haircuts, cashmere sweaters and Dougie Hayward jackets that belied his general impecuniousness. In 1966 he drove a Brabham in European Formula Three races, without great success, while Courage, competing in the same category, finished the season with 12 wins.

By the end of 1967 Williams’s business activities were turning a profit. Courage’s promising career, however, had stalled, and he was happy to accept his friend’s offer of a race at Brands Hatch in a prototype F3 Brabham. A win in their heat gave Williams his first victory as an entrant and established a partnership with Courage. The combination achieved respectable results the following year, although it was Jonathan Williams, taking over at Monza in Courage’s absence, who gave the team owner his first international win.

In 1969 the team moved up to Formula One, running a Brabham with financial support from Dunlop and Castrol. Early in the season a second place behind Graham Hill’s Lotus in the Monaco Grand Prix earned them both prestige and $20,000 in prize money. That would be the season’s best performance, but by the end of the year Williams had made a deal to run Courage in a car built by the Argentinian wheeler-dealer Alejandro de Tomaso.

After the car had performed poorly in the early races, Courage was in seventh place in the Dutch Grand Prix at Zandvoort when he ran wide in a fast bend and hit a bank. The car overturned and caught fire, trapping the driver, who died in the blaze. Badly affected by the death of a friend in a car that he had entered, Williams considered giving up the sport, but instead finished the season with other drivers. The next four years were a story of struggle and failure with a variety of cars, drivers and backers, the only bright note sounded when Jacques Laffite finished second in the 1975 German Grand Prix.

To keep the team going, at a time when his telephone line was regularly cut off, Williams borrowed money from many sources, from Bernie Ecclestone – then the owner of the rival Brabham team – to his girlfriend, the former Virginia Berry, who had left her husband, another racing driver, to be with him. When Frank and Ginny were married at a register office in 1974, both were skint and a friend stumped up £8 for the licence. The loans from Ecclestone cemented a relationship that would prove useful to both men in later years.

At the end of 1975 Williams entered into two partnerships. The shorter of them was with Walter Wolf, a Canadian with a fortune from the oil industry. The other, which would last several decades, was with Patrick Head, a young engineer. The new Wolf-Williams car, a modified Hesketh, was a disappointment, and Williams was humiliatingly eased aside.

He decided to leave completely, taking Head with him to start afresh under the name Williams Grand Prix Engineering. So allergic to bankers that he hid when a man from Barclays came with what turned out to be the offer of a £30,000 loan and an overdraft, he raised similar funding from a representative of Saudi Arabia’s national airline; the slogan “Fly Saudia” on the rear wing of their March car represented the first significant incursion of Arab oil money into sport.

Poor results did not deter the Saudis, and in 1978 the first Head-designed Williams, the FW06, made its debut in the hands of the team’s new driver, a pugnacious Australian named Alan Jones. The following year, renamed Albilad-Saudia, the team won five grands prix: the first at Silverstone, where the victorious FW07 was driven by Clay Regazzoni, followed by four for Jones.

Starting the 1980 season with a win from pole position in Buenos Aires, Jones took four more victories in the FW08 on the way to becoming world champion, the team taking its first constructors’ title barely a couple of years after Williams had been dodging bank managers. A further constructors’ title came the following year, and in 1982 Rosberg became Williams’s second world champion driver.

Once Williams had returned from his accident, Head and his assistants produced a stream of world-beating cars bristling with technical innovations. The active suspension, traction control and automated manual transmission of the Renault-engined FW14B – designed by Adrian Newey, a new addition to the technical team – allowed Mansell to become the first driver to win nine races in a single season on his way to the 1992 title.

Williams was now the team every driver wanted to join. In 1994, having watched his great rival Prost cruise to the previous year’s title in the FW15, the triple champion Ayrton Senna switched over from McLaren. The Brazilian was leading his third race in the FW16, at Imola, when he left the track, hit a wall, and was killed. It would be several years, and a journey through the Italian legal system, before Williams and Head were cleared of blame for an accident that forced F1 to reconsider its attitude to safety.

Williams and Head shared a view of drivers best summarised in the former’s words to the author Gerald Donaldson: “The best of them are driven, motivated, pushy, won’t-accept-second-best, immensely competitive people. This is what makes them good – because they’re bastards.” The no-nonsense Jones was their beau idéal, but their judgment was far from flawless. They gave Damon Hill, who had steadied the team after Senna’s death, his notice midway through 1996, the season in which he became champion, in order to replace him with the lacklustre Heinz-Harald Frentzen.

Jacques Villeneuve’s 1997 title, won the year after the team moved to new headquarters in the Oxfordshire village of Grove, would prove to be their last. The rejection of Newey’s request for the technical director’s role and a stake in the company led to the departure of a brilliant man who went on to design title-winning cars for McLaren and Red Bull. That decision prefaced the team’s gradual competitive decline, although engineering collaborations with Renault, BMW and others bolstered the company’s finances. In August 2020 he bowed to the inevitable and sold the team to a US investment firm, Dorilton Capital, for $152m, effectively severing the family’s connection with the sport.

Ginny died of cancer in 2013. While recovering from his accident, her husband had told her: “As I see it, Ginny, I’ve had 40 fantastic years of life. Now I shall have another 40 years of a different kind of life.”

Williams is survived by their three children, Jonathan, Claire and Jamie, and two grandchildren, Ralph and Nathaniel.

Man With Down’s Syndrome Marks 30 Years In Job

November 29, 2021

A man with Down’s Syndrome is marking 30 years of working at the same family-run tyre fitters.

Andrew Williams initially started working at Heath Tyres in Cardiff on a work placement and is still there at the age of 49.

The Welsh government is being urged by Learning Disability Wales (LDW) to create a national job coaching service to support people into paid jobs.

Andrew Evans, the manager of Heath Tyres, said they “found the right man for the right job” in Andrew.

About 54,000 people in Wales have a learning disability, but only 6%, UK-wide, are in employment.

One Disabled Rape Survivor’s Story

November 26, 2021

I have been a wheelchair user for a number of years, due to a progressive condition. I have been a rape survivor for four. These things are more connected than you might think.

I first met Alex (not his real name) four years ago. We were at a house party. He was drunk and I was sober; this would become a running theme.

I remember thinking how gorgeous he was. Months passed and we fell out of touch, apart from the odd message, until one night, quite unexpectedly, he came to my apartment. I had messaged him earlier in the day, hoping to catch up in the coming weeks over a coffee. Hours later, he messaged me saying he was out and wanted to talk. I had already taken my makeup off and was in my pyjamas, so I said he could come over for a bit instead. He was very drunk; I was sober. Even so, I was in my own home, in my pyjamas; I don’t remember feeling unsafe. We were friends.

Alex was intriguing and intelligent, but I can honestly say that I wanted and expected no more than a chat that night. He had other things on his mind. After we had chatted for a while, he picked me up from my wheelchair, carried me to my room and put me on my bed. I joked about getting an early night. He took his clothes off and straddled me, his arms either side of me. I froze. “Come on, it’s just a bit of fun,” he said, adding: “We’re both adults; it doesn’t have to mean anything,” as he urged me to let him go down on me. I can’t remember how many objections I put up, but when they didn’t work, I gave up, fearing violence if I persisted, and resigned myself to what was to happen: my “friend” was going to have sex with me without my consent – to rape me.

Afterwards he had me weighed down under an arm and a leg, so when he passed out, I couldn’t move. I lay there until he rolled over and fell back asleep. I wriggled to the side of the bed, slid to the floor and crawled to the kitchen to get my wheelchair. I didn’t sleep, instead focusing on how dry and chapped my lips were. Since then, I haven’t been able to sleep without applying lip balm.

The next day, I was confused. I texted my friends. Half of them encouraged me to be happy; I used to have a crush on him, after all. The other half pointed out the red flags I had been so willing to ignore when he showed up to my apartment stinking of wine.

I messaged him and we met to talk about it in person a few days later. He cried, worried about how this was going to affect his career prospects. I felt bad for him, so I decided to protect him by not reporting it. I thought that, if I tried to forget about it, in a week or so it would be over. I tried to find a way to soothe the feelings I had that somehow I was guilty for what had happened. In my mind, sexual assaults were things that happened between strangers in dark alleyways, not between two friends at home. I didn’t fit the black-and-white image of a sexual assault survivor – I use a wheelchair, after all – and this only added to my confusion.Advertisement

A week later, I was still sad and confused and experiencing pain and tenderness between my legs, so I went to the emergency room. There, the nurse referred me to the sexual assault treatment unit, where I finally realised that I had been sexually assaulted. The doctors used a mirror to show me what I couldn’t see. My vulva and my inner thighs were bruised black and blue. I wince just thinking about it now. It finally dawned on me that he had always meant to force himself on me.

Outside of this small, white hospital room, the whole world was talking about sexual assault. The #MeToo movement was at its peak. Women were being praised and encouraged to come forward with their stories. But those who did were Hollywood actors who had suffered assault at the hands of their directors or co-stars, or employees who had endured countless advances by their bosses. There was never any mention of people with disabilities.

Yet disabled women are almost twice as likely to have experienced sexual assault as non-disabled women. They are also more than five times as likely to have experienced sexual assault as disabled men. I know that my story is not the only one of its kind out there, even if it feels as if it is.

But I didn’t think my ego could stand another blow by admitting I was more of a victim than I wanted to be. My disability automatically made me a victim; how could I be a sexual assault victim, too?

The fear of not being believed deters reporting in many cases of sexual assault. But I was preoccupied with the idea that my case would be questioned because of my disability. More than one person I considered to be a friend asked about my sexual ability when I confided in them about the assault, as though this was the most important question. If my friends reacted this way, how could I expect others to be compassionate?

Some days I feel determined to share my story, and report it, for all the disabled women who can’t. Some days I just want to forget the whole thing and continue with my life. But forgetting seems impossible. I wonder if he is as haunted by it as I am.

The Everyday Assault Of Disabled Women: ‘It’s Inappropriate Sexual Touching At Least Once A Month’

November 26, 2021

Amy Kavanagh is as happy as anyone else that the world is opening up – but there is one thing she is not thrilled to be experiencing again. “As much as I’m excited to be getting out and socialising again, it comes at a cost,” she says. Kavanagh is blind and sexual harassment is as frequent in her everyday life as it is disturbing. “I get harassed in public, on the street, in shops, on public transport, in cabs and even in professional environments. Pre-pandemic, I experienced inappropriate sexual touching at least once a month,” she says.

While there has been a renewed focus on women’s safety since the deaths of Sarah Everard and Sabina Nessa, little attention has been paid to the harassment and violence faced by disabled women. Yet women with a disability are almost twice as likely to have experienced sexual assault (5%) as women without a disability (2.8%), according to ONS data for the two years to March 2020. This is not an anomaly; in the previous three years, the figure was 5.7%. In 2021, a survey of more than 1,000 disabled women carried out by the Trades Union Congress found that 68% had experienced sexual harassment at work. The figures constitute a hidden blight on disabled women’s lives.

Kavanagh says men often target her under the guise of assistance. “A typical experience is that someone offers to help me cross a road and, whether or not I accept, they grab me by the arm and refuse to let go. Often they will use this opportunity to touch my breasts, make inappropriate comments about my sexuality or physical appearance, or ask me personal questions about my body,” she says. She is certain that men target her because she is blind. “I can’t easily identify them, I can’t see them coming or know if they are following me or watching me.”

In response, Kavanagh started a Twitter campaign under the hashtag #JustAskDontGrab. There were hundreds of responses – including deaf people sharing how people “get their attention” with inappropriate touching and wheelchair users being moved without their consent. Ruth Murran, a wheelchair user, shared an experience of a man pushing her, without warning, during a trip to a shopping centre. When another woman intervened, he claimed he was just trying to help.

While the campaign’s message seems clear, Kavanagh says “disabled people often face hostility if they don’t accept help”. This could be verbal abuse, physical violence or even sexual assault. “This is why it’s so important to listen to disabled people when you offer help, as we don’t know whether your intentions are good or if you are the next person who might hurt or assault us.”

Katie, a wheelchair user, has also faced harassment and assault in public. She has a six-month-old daughter, so hasn’t been clubbing for a while, but when she did it lurked on every dancefloor: “Pretty much every time I went out, you’d have someone grab your breasts. That was quite common.” She says the groping was “people walking past, taking an opportunity … Because I’m sat down, I think it is more anonymous.”

If she went for a date in a bar, being seated in a booth came with risks, too. “People put their hands under my clothes, things that I have not consented to. And, obviously, I am marginally more vulnerable than other women. I can’t just quickly get up.” If, in a busy venue, she transferred out of her wheelchair into another chair, it created an extra level of vulnerability, as she couldn’t get away. “When you protest, it feels dangerous; you never know how they’re going to react. So you feel like you can’t say no.”

Both women say the problem is reinforced by the ableist narrative that disabled women are not attractive – and therefore won’t be on the receiving end of sexual harassment or violence. Kavanagh says this means that, when she talks about harassment, “the first reaction I always get is disbelief. People simply can’t believe that a blind woman gets groped. Disabled women are desexualised and infantilised, so people don’t think we experience anything sexual, including unwanted negative sexual experiences.”

Katie says she would now report any harassment, but “back then I would say: ‘Well, this is just what happens.’ Part of the reason for that was that people would say: ‘Well, why are they doing that to you? Because who’s going to see you as a sexual being? Anyway, you’ve probably misinterpreted their behaviour,’ or: ‘You should be grateful.’ I’ve had both those things said to me before – by friends.”

Also, perceived vulnerability runs through the stories of all the disabled women I speak to. Sarah (not her real name) is autistic and works as a journalist. Asked to describe her experience of sexual harassment, she says: “Where do I even begin? Creepy propositions, overly sexualised comments, being invited into hotel rooms … It is very disheartening,” she says.

Sarah says the problems can start when people disclose that she is autistic to others without her consent. “People take this as: ‘Oh look – they are vulnerable,’” she says. Predators can see autistic and other disabled people as not quite people, which makes it easier to justify harassment (if only to themselves). There is often an implicit assumption that these women don’t have the intellectual capacity to recognise harassment – or to stop it. Sometimes women find their disabilities are actively used against them, such as hypersensitivity to noise being used to justify a meeting in a hotel room, rather than the lobby.https://589ec0d862bdf50686b1128d3ba1315b.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

“I also find reading intentions from faces very difficult,” Sarah says. Many people, she says, are aware that this is a common feature of autism and manipulate their facial expressions in a deliberate attempt to confuse disabled women about their intentions. When an autistic woman finds she has been misled, she can be made to feel this is her fault. “I take safety extremely seriously for this reason,” Sarah says. It has made her suspicious and sometimes fearful.

For the Paralympian Anne Wafula Strike, it is hard to tell if harassers who make lewd comments about her body target her because she is a wheelchair user, a woman of colour or both. Her experience, she says, differs “depending on how I’m wearing my hair – if I want to look very African in the way I do my hair; stuff like that. And I think that, being a woman of colour, people push boundaries more, definitely.” Disabled women of colour are seen as “easy targets”, she says. While Wafula Strike is confident that she can tell the difference between “a man who is genuinely interested in me, with good intentions, and others that take advantage”, she worries that less outgoing or younger women may not.

Despite the statistics and testimonies from women such as Wafula Strike, Kavanagh and Sarah, none of the major women’s organisations I speak to say they can comment on the particular problems faced by disabled women. Instead, I speak to Dr Hannah Morgan, a senior lecturer at Lancaster University’s Centre for Disability Research. Disabled women face “neglect” by mainstream women’s services and anti-harassment efforts, she says.

“The impact and legacy of overprotective services” prevent disabled women from exploring their sexuality on their own terms, and separate them from the peer networks that build the confidence and knowledge to challenge inappropriate behaviour. There is also “strong evidence that disabled women have been less likely to be believed or seen as credible witnesses in a prosecution, and the false assumption that disabled women are ‘safe’ from forms of sexual harassment … because they may deviate from socially constructed norms about beauty and sexual attractiveness”.

Often, she explains, disabled women have to choose between freedom from harassment and freedom in general. What do you do if you are groped by the taxi driver who represents your only access to the high street, or the barman who puts out a pub’s portable ramp for you to meet your friends? Morgan agrees with all the other women to whom I speak: disabled women are subject to “assumptions about their ‘inherent vulnerability’ and a greater assumption that the perpetrator will get away with it”.

It can become unbearable – and has real social effects, too. “The psycho-emotional impact, or emotional toll, can lead some disabled women to reduce their potential exposure by limiting their social activities or participation in work or education,” Morgan says. In a world where inaccessibility and ableist attitudes keep disabled people out of society, sexual harassment is one more horrible reason to just stay at home.

With attitudes to disability so entrenched in society, the hope for change can seem minimal. But as we have seen this year, sharing stories can start new conversations and spark change. If we are truly to take on harassment culture, it is time to place disabled women’s experiences front and centre.

Hackney Man First To Receive 3D-Printed Prosthetic Eye

November 26, 2021

A hospital patient will become the first person in the world to have a 3D-printed prosthetic eye.

Steve Verze, from Hackney, east London, will receive the eye on Thursday at Moorfields Eye Hospital in London.

It is hoped the eye will be more realistic than a traditional acrylic prosthetic eye.

It will also cut the time it takes for patients to be fitted with their prosthetics in half, from six weeks to three.

“I’ve needed a prosthetic since I was 20, and I’ve always felt self-conscious about it,” said Mr Verze, who is in his 40s.

‘Looks fantastic’

“When I leave my home I often take a second glance in the mirror, and I’ve not liked what I’ve seen.

“This new eye looks fantastic and, being based on 3D digital printing technology, it’s only going to be better and better.”

For a traditional prosthetic a patient has to undergo a two-hour session to mould their eye socket, before the prosthesis is fitted and then painted.

The 3D printed prosthetic should reduce the manufacturing process to two to three weeks, with the initial appointment taking just half an hour, according to the hospital.

Professor Mandeep Sagoo, consultant ophthalmologist at Moorfields Eye Hospital, said the staff were “excited” at the potential of a fully digital prosthetic eye.

“We hope the forthcoming clinical trial will provide us with robust evidence about the value of this new technology, showing what a difference it makes for patients.

“It clearly has the potential to reduce waiting lists.”

100 People Held More Than 20 Years In ‘Institutions’

November 25, 2021

One hundred people with learning disabilities and autism in England have been held in specialist hospitals for at least 20 years, the BBC has learned.

The finding was made during an investigation into the case of an autistic man detained since 2001.

Tony Hickmott’s parents are fighting to get him housed in the community near them.

BBC News overturned a court order which had prevented reporting of the case.

Mr Hickmott’s case is being heard at the Court of Protection – which makes decisions on financial or welfare matters for people who “lack mental capacity”.

Senior Judge Carolyn Hilder has described “egregious” delays and “glacial” progress in finding him the right care package which would enable him to live in the community. He lives in a secure Assessment and Treatment Unit (ATU) – designed to be a short-term safe space used in a crisis. It is a two-hours’ drive from his family.

This week, Judge Hilder lifted the anonymity order on Mr Hickmott’s case – ruling it was in the public interest to let details be reported. She said he had been “detained for so long” partly down to a “lack of resources”.

Like many young autistic people with a learning disability, Mr Hickmott struggled as he grew into an adult. In 2001, he was sectioned under the Mental Health Act. He is now 44.

“Nine months we were told he’d be away, until they found him a suitable place in the Brighton area,” says his father, 78-year-old Roy.

Mr Hickmott was finally declared “fit for discharge” by psychiatrists in 2013, but he is still waiting for the authorities to find him a suitable home with the right level of care for his needs.

“If he’d murdered someone he’d be out now. He’s lost his family, he’s lost his home,” says his mother Pam, who is 81. “He’s just a shadow of the human he used to be. There are so many families like us – crying and screaming. We are our children’s voices.”

His Assessment and Treatment Unit care is paid for by the NHS – but the cost of housing and caring for him in the community with trained staff would fall to Pam and Roy’s local authority, Brighton and Hove, and local NHS commissioners. That process has been bogged down in delays and wrangles. Pam believes the delays are over funding.

“We’ve got judges telling them to get on with it but they’re still not doing it, they’re still fighting over the money.”

Finding suitable housing with skilled support staff can be a complicated process. But Mr Hickmott’s family argue it should have been put in place a long time ago.

Pam and Roy’s home is full of photographs showing their son in happier times. Birthday parties, smiling with his two sisters, holidaying with his mum and dad. The couple used to visit him twice a week – although, now they are that bit older, they just travel up on a Thursday.

“I’ve gone through three cars traveling to and fro,” says Roy. “Sometimes Pam and I travel back and pull in at the side of the road and we just cry.”

Six evenings a week – at 17:00 – they speak to their son on the phone.

“He describes all the rooms in our house. His memory of his home is all he’s got,” says Pam.

During past visits to the ATU, Pam says they drew pictures of a house with a garden by the sea. She would tell her son he would be home soon.

“He doesn’t believe us any more. He doesn’t believe he’s coming home.”

In addition to the 100 patients, including Mr Hickmott, who have been held for more than 20 years – there are currently nearly 2,000 other people with learning difficulties and/or autism detained in specialist hospitals across England.

In 2015, the Government promised “homes not hospitals” when it launched its Transforming Care programme in the wake of the abuse and neglect scandal uncovered by the BBC at Winterbourne View specialist hospital near Bristol. But data shows the programme has had minimal impact.

Ministers pledged to reduce the number of patients in such hospital settings by 35% by March 2020, with the aim of people being back in their communities with tailored support packages. But, by March last year, there were only 300 fewer patients detained – a reduction of just 13%.

The 35% target has now slipped to 2023/24.

It was further BBC News analysis of this official data which revealed that of 350 people detained for more than a decade, 100 of them have been in hospital settings for more than two decades.

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Numbers of people with learning disabilities and/or autism in inpatient units in England:

  • March 2015 – 2,395
  • March 2020 – 2,095
  • October 2021 – 2,070

Source: NHS Digital

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Last month, crossbench peer Baroness Hollins – who has been reviewing long-term segregated care – told the House of Lords it was time to “end the scandals” and give people back their lives. But she also spoke of another man – Mr W – held largely in solitary confinement for 20 years but who, for the past three years, had lived around the corner from his parents.

“Despite still recovering from the trauma, he is now happy,” she said.

This is what Roy and Pam Hickmott want.

The author of the Serious Case Review into what happened at Winterbourne View, Dr Margaret Flynn told us the “institutions” detaining people like Tony should not exist.

“It’s appalling. These people are not criminals. They are stuck, just as people used to be stuck in long-stay institutions.”

She says there is so much testimony from people with a learning disability and/or autism – and their families – about “harmful experiences” when they are removed from “all that is familiar to them”.

Judge Hilder – who has allowed Tony Hickmott’s case to be reported following an application by the BBC and Sky News – has ordered the authorities involved in his care to work together to move him back to Brighton by May.

In a statement, Brighton and Hove Council said: “Tony has extremely complex needs. We’ve tried on a number of occasions to find a sustainable solution nearer to Brighton… these were not successful.” The council says it is working with the NHS and Mr Hickmott’s family to find other options.

NHS England in the South East says it is continuing to work with partner organisations – and Roy and Pam Hickmott – to ensure “appropriate care and support is in place”.

Grace Dent Comfort Eating With Rosie Jones

November 25, 2021

Grace’s Comfort Eating guest is comedian Rosie Jones. She and Grace sit down to talk family, friends and the comfort foods that have seen them through. Rosie tells Grace about orgies, sausage rolls, and what it’s like to be disabled – and constantly hungover – at university.

Kevin Sinfield: Leeds Rhinos Legend Raises £800,000 After Completing 24-hour 101-Mile MND Run

November 24, 2021

Rugby league legend Kevin Sinfield has completed a run of 101 miles in 24 hours in aid of motor neurone disease research and raised more than £800,000.

He set off on Monday from Welford Road, where he is a Leicester Tigers coach.

The route ended at Headingley, home of rugby league club Leeds Rhinos, where he played for 18 years.

Sinfield raised £2.7m last year by running seven marathons in seven days and was a team-mate of Rob Burrow, who was diagnosed with MND in 2019.

“It’s been a real team effort from all the crew and I wouldn’t have got it done without them,” Sinfield told BBC Breakfast after finishing at Headingley.

“The support along the route has been incredible right from the start. It was certainly a battle – we wanted a battle and we certainly got one.

“I’m broken – I don’t know when I’ll be able to run again.

“Rob knows how much we love and care about him. For those really dark moments you have to think of Rob.”

The 41-year-old initially set a fundraising target of £100,000 for the Extra Mile Challenge, but he had already exceeded that total before he started the run at 08:40 GMT on Monday.

At the conclusion of the challenge, the total raised had soared to well over £500,000 and has continued to rise, with the fundraising site collecting donations crashing as Sinfield completed the feat.

His gruelling route from the East Midlands to West Yorkshire was split into 7km sections, with each one having to be completed within 60 minutes.

Sinfield, who was awarded an OBE in the Queen’s Birthday Honours in June for fundraising and services to rugby league, was cheered on throughout the challenge and was greeted by hundreds of fans, as well as Burrow and his family, inside Headingley.

“Thanks so much to all involved with this amazing event. The money raised will help people to get great facilities for a new care centre and to help find a cure for MND,” Burrow told BBC Breakfast.

“Today is a an amazing day for the whole community and will benefit every sufferer.

“Lastly, to my amazing friend Kev, you don’t realise the impact you have had on me and the whole MND community.”

MND affects the brain and nerves and eventually stops muscles functioning.

The government has pledged to put at least £50m into MND research over the next five years.

Lizzie Emeh Obituary

November 23, 2021

My friend Lizzie Emeh, who has died aged 44 after a short illness, was a pioneering artist and songwriter who championed the rights of people with learning disabilities in the UK. In 2009 she made history with her debut album, Loud and Proud, becoming the first person with a learning disability to release an album of original songs in the UK.

Born and brought up in west London, Lizzie was of Irish and Nigerian heritage. Her parents, Kathleen (nee O’Neill) and Jonathan Emeh, were told she would never walk or talk due to severe medical complications. However, at four years old she proved the doctors wrong, and throughout her life she continued to defy the odds.

Music was a key part of Lizzie’s childhood, and she started singing aged 10. From the age of 11, Lizzie boarded at Parkwood Hall cooperative academy, a school for children with learning disabilities, in Swanley, Kent.Advertisementhttps://87897dc7b5beff75976e37bfdc461ed6.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Her career really started to develop in 1999 when she was discovered by Heart n Soul, a creative arts community based in south-east London. From 1999 to 2007 Lizzie toured with the Heart n Soul Experience across Europe, performed for three consecutive years at Glastonbury festival, and took Heart n Soul Unplugged to Asia.

In 2009, she released her debut album, Loud and Proud. It charted her key life experiences and she described it as “eclectic, wide-ranging and with lots of soul”. The album was a rallying call for people with learning disabilities. Lizzie won two national awards for her contribution to music, and she actively encouraged a number of learning-disabled artists to develop careers in the music industry.

Lizzie was a charismatic, engaging force of nature on a mission to effect change. She used her success to share her inspiring life story with thousands of people across the UK. She was also part of a groundbreaking research project at the Wellcome Collection in London, called Heart n Soul at the Hub, exploring learning disability, love and human value.

A major highlight was performing with Beverley Knight at the opening ceremony of the London 2012 Paralympic Games in front of 80,000 people. Lizzie was a fearless performer, and audiences loved her authenticity, her direct lyrics and the soulful power of her voice. Over the past few years, she had collaborated with the London Symphony Orchestra and released a further three EPs.

Lizzie met Eddie Goodman 18 years ago via a mutual friend at the LeeGrove Club, also known as the Tuesday Club, for people with learning disabilities, based in Grove Park, south-east London. They were friends for a long time, got together around 2010, and were married in 2016.

Lizzie is survived by Eddie, her sister, Monica, and her brothers, Chris and Eddie.

DWP Urged To Reveal Algorithm That ‘Targets’ Disabled For Benefit Fraud

November 23, 2021

Disabled people are being subjected to stressful checks and months of frustrating bureaucracy after being identified as potential benefit fraudsters by an algorithm the government is refusing to disclose, according to a new legal challenge.

A group in Manchester has launched the action after mounting testimony from disabled people in the area that they were being disproportionately targeted for benefit fraud investigations. Some said they were living in “fear of the brown envelope” showing their case was being investigated. Others said they had received a phone call, without explanation as to why they had been flagged.

The Department for Work and Pensions (DWP) has previously conceded that it uses “cutting-edge artificial intelligence” to track possible fraud but has so far rebuffed attempts to explain how the algorithm behind the system was compiled. Campaigners say that once flagged, those being examined can face an invasive and humiliating investigation lasting up to a year.Advertisementhttps://572bf69b7786a55f7aff47c7806f8708.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

A legal letter has been sent to the DWP demanding details of the automated process that triggers the investigations. Greater Manchester Coalition of Disabled People (GMCDP), which sent the letter with the help of campaign group Foxglove, said a “huge percentage” of the group has been affected by the system. The group believes the government has a legal duty to be transparent about how the algorithm works.

Concerns were raised by the charity Privacy International, which first found references in a DWP report to its use of “cutting-edge artificial intelligence to crack down on organised criminal gangs committing large-scale benefit fraud”. A 2019 UN report into the “digital welfare state” said algorithms were “highly likely” to repeat biases reflected in existing data and make them even worse. It added: “Inbuilt forms of discrimination can fatally undermine the right to social protection for key groups and individuals.”

The government has until Friday to respond to the legal letter.

“We’re tired of the fear of the brown envelope and tired of being repeatedly forced by DWP officials just to justify who we are,” said Rick Burgess of the GMCDP. “It’s time for the DWP to come clean about how this algorithm works and explain why so many disabled people are flagged for investigation. Disabled people need support – not being ground down by a brutal system that assumes we are fraudulent until proven innocent.”

Foxglove said: “The DWP algorithm seems to send poor and disabled people to the call centre from hell. The DWP needs to explain exactly how its algorithm works and what is done to eliminate bias – or be taken to court.”

Officials stressed that specialist staff were involved in any cases of suspected fraud and error and support was offered to those who needed it. A DWP spokesperson said: “The DWP will be responding to the letter written by the representatives of the GMCDP in due course.”

Strictly Come Dancing Inspires Deaf Signing Course For Teens

November 23, 2021

A charity that supports deaf people is to run a sign language course for teenagers after this year’s Strictly Come Dancing series sparked lots of interest.

EastEnders actor Rose Ayling-Ellis is the first deaf contestant in the BBC programme’s history.

Deafconnect in Northampton said interest in how the actor communicates had led to lots of inquiries.

It said it had given them the impetus to put on a course for young people.

Chief executive officer, Jenny Dawkins, said the casting of deaf actor Lauren Ridloff as superhero Makkari in Marvel Studios’ Eternals film had also raised awareness.

“We have wanted to do [this course] for a long time but this has kind of pushed us,” she said.

“Now is the time because it’s what everyone is talking about.”

Ayling-Ellis and her professional dance partner Giovanni Pernice have been praised throughout the series but last week, they paid particular tribute to the deaf community, while dancing to music by Clean Bandit and Zara Larsson.

Halfway through, the music cut out as the pair danced on, in order to show people what a deaf person’s world was like.

The charity said Ayling-Ellis had given people an “amazing insight into life as a deaf person”.

Ms Dawkins said it was “fantastic proof that a deaf person can do anything they want to do”.

“Not all deaf people can now dance, but our aim is to give all deaf people a chance to be fully included if they want to do something,” she said.

She said they had wanted to run a course for teenagers for a while, as affiliated British Sign Language (BSL) courses are not really aimed at young people.

Plus, deaf children were now encouraged to go to mainstream schools and the pupils want to communicate with each other.

The charity’s six-week after school course for 11 to 18-year-olds covers a lot of the basics and, while it was not a qualification, it acted as a taster for the affiliated sessions.

Ms Dawkins said there was a lot of interest in the class, which starts in January, and there they would have to start a waiting list or put on another class.

‘Diagnosis Is Rebirth’: Women Who Found Out They Were Autistic As Adults

November 22, 2021

Less than 20 hours after asking women who had received a late diagnosis of autism, we received 139 replies from around the world.

There were women whose lives had been scarred by victimisation, from bullying to rape, because without a diagnosis they did not know they were highly vulnerable to manipulation and abuse.

There were women who were diagnosed in their 70s, who had known there was something different about them for 60 years. There were those who described the decades-long struggle to fit in as a trauma that pushed them to mental collapse, sometimes to the point of attempted suicide.

Others had wasted decades being misdiagnosed, prescribed unnecessary drugs and forced to remain in mental health wards while experts failed to diagnose their condition – or refused to listen to the women’s accurate self-diagnosis because, the experts insisted, the woman did not “look” or “act” autistic.

Women of colour and non-binary women seemed to find it particularly hard to get diagnosed.

“I was around 20 when I started to question whether I could be autistic but quickly dismissed this possibility because as a young Black woman, I did not fit the stereotypical autistic presentation of a young, white boy,” said one 35-year-old woman who asked to remain anonymous.

 

Almost every woman said they had known almost all their lives there was something different about them. As one put it: “I searched for 45 years for who I was. I had no identity – it was like looking in a looking glass with no reflection.”

Finally getting the diagnosis was life-changing for many. “I am so utterly relieved to finally have an answer,” said Sarah Martin, 52, who was diagnosed last month. “I had no idea life could feel this good. Diagnosis is rebirth.”

Sophie Meredith, 31, from Shropshire agreed. “Being told that there isn’t something inherently wrong with you and your brain is just wired differently is life-affirming,” she said.

Erica Evans said her diagnosis at 50 unleashed “a wild mix of both positive and negative emotions”. “It was validation, confirmation, empowerment,” she said. “I no longer feel like a ‘broken’ neurotypical.”

Many women felt conflicted by their diagnosis: they spoke of mourning the years they had spent misunderstanding themselves and being misunderstood by others.

Kirsty Stonell Walker, 48, from Southampton, said she felt “utter relief that the way I am is not my fault – but a sense of depression that I will never be better at being a person than I am now”.

Others spoke of the often crippling impact on their mental health of decades spent “masking” – pretending to be neurotypical. For others, a late diagnosis was devastating.

A 61-year-old woman from Yorkshire, who asked to remain anonymous, said: “Learning I was autistic later in life made me feel I wasn’t a whole person. I felt disbelief, despair, sadness, loss and pain.”

“Why tell me now? I can do nothing about it. What help is there for me? Nothing. Society doesn’t understand us. Government doesn’t help us,” she said. “And there is nothing I could do to improve that diagnosis.”Advertisementhttps://a08c1b6ff974e33dbb983c45a49dca92.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Even for those women who go through the process of diagnosis, the NHS wait can be devastating: between four and nine years.

But even once a diagnosis is secured, many women still struggle. Amber Affleck, 28, was relieved to finally get her diagnosis five years ago but also “confused as there was no help available to help me to deal with it”.

She said: “I have been left to pick up the pieces and figure it out myself, with no help at all.”

For some women, other people’s reaction to the diagnosis they craved has been a fresh trauma: relatives have ignored the diagnosis or viewed it as attention-seeking, friends have become wary, others have dropped contact.

Most women, however, spoke ecstatically about the result of their diagnosis. “My life has been completely transformed,” said one. “It’s like realising that not everyone lives in a cage, like you; some people really just do find life easier, and that doesn’t make you a failure.

“I’m finally living as an authentic version of myself, and it’s indescribably empowering. I am free.”

Felix Klieser: Playing The Horn Using My Left Foot

November 22, 2021

The Bournemouth Symphony Orchestra has begun its autumn season with musician Felix Klieser as its artist in residence.

The 30-year-old German professional hornist will tour with the orchestra for the next two years. Felix was born without arms and plays the keys with his left foot.

Disabled People And Partners Not Welcome At Travelodge Hotels

November 19, 2021

After arriving at a Travelodge hotel with my partner who is a wheelchair user, we were faced with an issue. According to the staff at Travelodge, all accessible Travelodge rooms across the country are only fitted with single beds. After explaining that we were partners who booked a double room, they replied that Travelodge don’t offer this as to quote ‘disabled people mainly travel with their carers so need single beds’. 

Myself and my partner were horrified that Travelodge don’t think or believe that disabled people could possibly have a partner they would want to sleep in a bed with. We were also stumped how staff could possibly know who a disabled person was traveling with. It’s fairly obvious that the staff are making assumptions that if you’re disabled and traveling, it must be with a carer. That disabled people couldn’t possibly be in relationships and want to share a bed with them. 

When talking to staff members at Travelodge, we were also upset and disgusted in the manner my partner was treated. The staff would only speak to myself (an able bodied person) and would not ask questions about my partner, to my partner. Making another assumption that my partner was incapable of speaking for themself.

I want Travelodge to hold accountability as a huge UK chain hotel company that offers accessible rooms to offer rooms with double AND single beds to cater for disabled people traveling with partners. This is the bare minimum expected at a hotel that offer a variety of double and single rooms for people not requiring an accessible room. I would also like Travelodge to commit to taking accessibility and disability awareness more seriously within their staff members and take the relevant, regular training for staff working at Travelodge hotels. 

Michael Shamash Obituary

November 19, 2021

Although small in stature, my friend Michael Shamash, who has died aged 63, had a very big presence in the lives of many who knew him. Michael had an aptitude for building lasting friendships, whether through chairing the Restricted Growth Association (2003-07), lecturing on critical disability studies at the University of Middlesex, his directorship of the disability advocacy organisation Shaping Our Lives (2018-21), or through his work in social care and his wide range of interests.

I met Mike in London in the early 1980s, when we both worked for Camden social services department. Later, we joined forces as shop stewards for the local branch of the public sector union Nalgo (now incorporated into Unison). Mike was passionate about social justice and worked hard to represent the interests of staff in need of help. In the 1990s he served as a trustee to the British Association of Social Workers.Advertisementhttps://ee1522f49983ebbbd072df830668c7d6.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

On visiting Mike’s flat for the first time, I was struck by the huge, framed wall prints of Russian communist iconography, depicting strong, proud images of Russian industrial workers. These works reflected Mike’s overlapping interests in art, fashion, politics and travel; he regularly travelled, often alone, to non-tourist destinations, such as (then) eastern bloc countries, to enquire for himself about life under different regimes.

Also in Mike’s flat were his display of model buses, a form of transport he regularly used and one about whose regional history he had an almost encyclopedic knowledge. Mike could also wax lyrical on the merits of the Trabant car and, eventually, he journeyed to Germany in one with his childhood friend Will Self, the subject of a BBC Radio 4 series, Self Drives: The Trabant, broadcast in 2016.

One of four children of Charles Shamash, a dentist, and Arabella (also Shamash by birth), Mike grew up and lived all his life in north-west London. He went to University College school in Hampstead, and studied sociology and politics at the University of Warwick before joining Camden council as a social work assistant. Later he completed an MA in criminology at the University of Middlesex.

He loved the city of his birth, despite the demise of some landmarks that were personally significant to him. He and other contributors memorialised these on a website he and an old college friend initiated, called London RIP. As someone with restricted growth, Mike was noticeable when out in public and too often experienced being stared at or even ridiculed. Although never lost for the right expletive, Mike was rarely downhearted and his positive outlook was one of his many strengths, along with warmth, interest in others, and sense of fun.

Ten years ago Mike met Helen Tonge and together they had a daughter, Lydia. Mike rejoiced in fatherhood and adored Lydia, who is now two years old and is proving to be as sociable as her dad.

Mike is survived by Helen and Lydia, his mother, his sister, Adele, and brothers, Jack and Philip.

Catterick Veteran Named World’s Strongest Disabled Man

November 18, 2021

A veteran who was injured in an explosion in Afghanistan has won the title of World’s Strongest Disabled Man.

Mark Tonner, who lost the use of his right arm in 2010, took part in the contest in Iceland and broke the world record by lifting 280kg (44 stone) with one arm.

The 38-year-old, from Catterick, trains in Darlington and said weightlifting is “like therapy”, as it has helped him recover from PTSD after the explosion.

Wheelchair User ‘Pushed From Brighton’s Legends Club Dancefloor’

November 18, 2021

A wheelchair user has expressed anger after claiming his chair was pushed off a dancefloor by nightclub staff.

Tyler Paul, 29, was on a basement dancefloor at Legends in Brighton when he said he was asked to leave.

A video on social media appears to show a bouncer grabbing his wheelchair to escort him off the dancefloor.

Legends apologised, but said the video only showed a “snapshot”. It also said its basement was not wheelchair-accessible due to fire regulations.

Mr Paul, from Worthing, has cerebral palsy. He uses a wheelchair, but can walk with support.

‘Unacceptable’

He visited the nightclub on Saturday, and walked downstairs to the basement dancefloor with the help of friends during the evening.

He said he was initially asked to sign a document saying he was happy to be downstairs.

But ten minutes later, Mr Paul said another bouncer asked him to leave.

He said when he questioned why, the bouncer started pushing his chair to make him leave the dancefloor.

He explained: “That’s the same as someone coming up to an able-bodied person and touching their body and pushing them along.

“I just found that unacceptable.”

Fazilet Hadi, head of policy at Disability Rights UK, said inaccessible venues are an “everyday occurrence” for disabled people.

She said: “The burden of challenging venues always falls on us as disabled people. That’s really, really hard.”

Mik Scarlet, an accessibility consultant who has advised venues like the Ministry of Sound, says staff at venues need better training.

“You don’t put your hands on people and just grab them. You don’t talk down to them,” he told the BBC.

“I’m afraid most nightclub security staff do not have that level of training.”

The Security Industry Authority, which regulates bouncers in the UK, said staff with its licenses were “trained in aspects of the differing needs of customers with disabilities”.

Legends said in a statement its bouncers had acted “with full professionalism”.

The nightclub also said the video only showed a “snapshot” of what happened.

It said fire regulations prevented wheelchair-users from accessing the basement, and when Mr Paul was asked to go back upstairs he refused.

However, it said that it was “sorry” that Mr Paul wasn’t able to enjoy his night.

Mr Paul said he hopes sharing his experience would encourage venues to be more accessible.

Frida Kahlo Art Fetches Record $34.9m At Auction

November 18, 2021

A painting by Mexican artist Frida Kahlo has sold at Sotheby’s auction house in New York for a record $34.9m (£25m).

It is the highest price paid at auction for a Latin American artwork.

The record had previously been set by a work by Diego Rivera, with whom Kahlo had a decades-long tumultuous relationship. His piece sold for $9.76m in 2018.

Kahlo’s painting “Diego y Yo” was one of her final self-portraits.

The work depicts a tearful Kahlo with her husband Rivera painted above her eyes.

It was described by Sotheby’s at the auction on Tuesday as “one of the most important works by Kahlo ever to come to auction”.

The buyer has been identified as Eduardo F. Cosantini, who founded a museum in Argentina, according to the New York Times.

The painting was last auctioned in 1990 for $1.4 million.

Kahlo, widely regarded as one of the greatest painters of the 20th Century, was famed for her intimate self-portraits reflecting pain and isolation.

She lived from 1907 to 1954 and proudly promoted indigenous Mexican culture through her art.

Her work also chronicled her painful relationship with her body, disabled through childhood polio and severe injuries following a bus accident.

Is TikTok Giving Young Women Tourettes?

November 17, 2021

Michelle Wacek was a TikTok fan years ago, back when the video-sharing app was called Musical.ly. “I went on it for a laugh,” she says. “And then I got sucked into the vortex.” She took part in lip-syncing challenges, and followed the influencer Evie Meg, who raises awareness about Tourette syndrome among her 14 million followers.

In April 2020, Wacek was messing around in the kitchen when her husband accidentally clipped her in the face. The then 25-year-old chef had a panic attack. “It triggered a PTSD response from a previous abusive relationship I was in,” she says.

Over the next few weeks, Wacek noticed that she was having tics. “They were just little noises,” she says. “Nothing to write home about.” She would scrunch up her nose, or huff. The tics escalated from sounds into words and phrases. Then the motor tics kicked in. “I started punching walls and throwing myself at things,” she says. By July, Wacek was having seizures. She had to stop work. “Being a chef with seizures is not safe at all,” she says.Advertisementhttps://8f8b01111fe4957d32b8adbfcc016c36.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Her GP referred her to a neurologist, who diagnosed her with functional neurological syndrome (FND). People with FND have a neurological condition that cannot be medically explained, but can be extremely debilitating. “In a general neurological clinic, around 30% of the conditions we see are not fully explainable,” says Dr Jeremy Stern, a neurologist with the charity Tourettes Action. In Wacek’s case, FND manifested in verbal and motor tics, not dissimilar from how Tourette syndrome appears to lay people, although the two conditions are distinct.

Wacek has up to 20 seizures a day and currently has to use a wheelchair. Like Meg, she is now a TikTok influencer, using her platform to raise awareness of FND. “Knowing that I am going through the same crap as other people out there makes me feel better,” Wacek says. “Without all these platforms, I would be quite isolated.”

This month, Wacek’s Facebook groups and online communities lit up. The source: a Wall Street Journal report about the rise in young women developing sudden-onset tics that doctors thought could be linked to TikTok. The article prompted a swift backlash from many in the Tourette’s and FND community. “I read the article and thought it was a load of crap,” says Wacek. “TikTok is not giving people Tourette’s.” The fact that she followed Meg before developing tics herself, says Wacek, is a “coincidence”.https://8f8b01111fe4957d32b8adbfcc016c36.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

But there isa rise in young women presenting with unexplained tics that come on suddenly, far later in life than the usual presentation for Tourette syndrome. Some of these young people are social media users, some are not. What on earth is going on?

The neurological journal Brain isn’t typically the locus of international controversy. But times are changing. “Journals are more open-access than ever before,” says Dr Seonaid Anderson, a research psychologist and neurodiversity consultant who specialises in Tourette syndrome. “People with neurodiverse conditions can access what is being written about them far more freely. Webinars often feature patients in the audience.”

In August, Brain published a paper with the incendiary headline:“Stop that! It’s not Tourette’s but a new type of mass sociogenic illness”. In it, clinicians from Hannover Medical School in Germany speculated that a mass sociogenic illness (MSI) that resembled Tourette’s but was not Tourette’s, was spreading among German teenagers. A sociogenic illness, explains researcher Dr Kirsten Müller-Vahl, “is when people who are in close contact develop similar symptoms, but without any underlying cause”.

A mass MSI outbreak was seen in the UK at a Lancashire school in 2015, where 40 pupils received medical treatment for dizziness thought to be brought on by anxiety after a handful of children fainted during an Armistice Day service in a warm assembly hall. MSI is currently in the news as a possible cause for the mysterious Havana syndrome, which is affecting diplomats at US bases across the world. But experts did not believe MSI could be spread via social media – until the Hannover team’s research.

MSI ripples outwards from a “patient zero”, infecting the people around that person in waves of anxiety-induced illness. “People now use social media so intensively that it more or less replaces our normal context,” says Müller-Vahl. “You can be in close contact with someone via social media, it can be very emotional, and you can identify with that influencer. We believe that spread can happen solely via social media.” In this case, Müller-Vahl identifies this patient zero as a German YouTuber, Jan Zimmerman, who has Tourette syndrome and runs a channel with 2.2 million subscribers.

In 2019, Müller-Vahl says, teenagers began to present at her clinic with functional Tourette’s-like symptoms, a subset of FND. Typically, Tourette’s starts during childhood, with six the average age of onset. But the mean onset age of Müller-Vahl’s patients was 19. Their symptoms also escalated more quickly than typical Tourette’s. In all, since 2019 Müller-Vahl has seen nearly 50 young people; all of them confirmed that they watched Zimmerman’s channel. She believes FND was spread via social media contagion, in much the same way that a fainting fit ripples through a packed school hall.Advertisement

Müller-Vahl is not accusing young people of faking illness. “I know no expert who feels this is malingering,” she says. But the title of her paper – Stop That! – was interpreted that way. “People criticised our title because it was a bit provocative,” says Müller-Vahl, sounding exasperated. “But we are not saying to the patients: ‘Stop that.’ It’s addressed to medical doctors. Stop diagnosing this as Tourette’s, when it’s FND.”

Be that as it may, says Anderson, “It’s easy for the public to think people are saying that you should stop your tics. We want people to get away from that view, which is linked to the dark days of previous years.”

The phenomenon Müller-Vahl’s team observed – young people with sudden-onset tics, thought to be FND and possibly linked to social media exposure – has been observed by clinicians globally. With the exception of Müller-Vahl’s own study, most of those with the symptoms are female. “We’ve seen groups of teenage girls from the same school who develop almost identical tics,” says Dr Tammy Hedderly, a paediatric neurologist at Guy’s and St Thomas’ NHS trust. Stern has likewise heard of outbreaks in UK schools.

“They shout ‘Baked beans!’ or hit their parents on the head,” says Hedderly. “When a 15-year-old girl walks into my clinic shouting ‘Baked beans!’, my first question is: ‘Have you been watching this influencer? Because I know all the names of the influencers. So it’s important to recognise that social media does play a role and the scale of the problem is wide, across the UK.”

In the US, Dr Caroline Olvera, a neurologist, has also seen an increasing number of young people, mostly girls, presenting with sudden-onset tics. She wrote a research paper based on her study of more than 3,000 videos of TikTok Tourette’s influencers, observing: “Despite our study cohort spanning different countries, 67.9% of the cohort mentioned their TikTok tics were from other content creators, and the majority had the same vocal tic.”Advertisement

Olvera’s research has not gone down well in some quarters. “I’m frustrated,” she says. “I’ve tried to stop reading a lot of what is written out there.” She’s received “lots” of angry emails. “My colleagues have had a positive response to my research,” she says, “but I don’t know if it’s been perceived appropriately by the public. The last thing I would want is for my patients to walk away from this thinking that their disorder is fake or not worthwhile.”

Much of the controversy arises from the misapprehension that doctors are accusing young people of faking Tourette’s for attention, or arguing that TikTok is givingpeople Tourette’s. Neither claim is true. “What the media has boiled it down to,” says Olvera, “is that if it’s not Tourette syndrome, it’s fake. But just because it’s not Tourette syndrome doesn’t mean it’s fake. This is a real condition. Even though it’s not typical Tourette’s, it’s very disruptive and stressful.”

Meg Jones, 17, began experiencing tics in February this year. “I was really stressed out,” she says. Her puppy was sick, and Meg was behind at school. “I had teachers phoning me non-stop, asking me where my work was,” she says. “At one point I broke down.” The tics started with neck jerks and escalated within weeks. Meg would hit her friends and head-butt things. By May, she was having seizures.

Meg was recently diagnosed provisionally with Tourette’s – over the phone. “The call was less than five minutes long,” she says. “The neurologist didn’t say much. He just said, ‘I believe you have Tourette’s.’” (A diagnosis of Tourette syndrome requires a person to have had verbal and motor tics for at least one year.) She is on the children and adolescent mental health services (Camhs) waiting list. “If I was to look at my life and think of all the things I can’t do at this point, and how uncertain the future is,” says Meg, “I would become extremely depressed.”

After she developed tics, Meg started to follow TikTok influencers with Tourette’s. She is a fan of @UncleTics, a New Zealand influencer with 3.2 million followers. “Finding people who are going through the same thing helps a lot,” she says. “But I also noticed that watching other people tic made me tic.” She picked up specific vocal tics from these TikTok accounts, such as blurting out the word “lesbian”.

It is widely accepted by experts that tics are “suggestible”, meaning that people with tics often trigger new tics in each other. “We know that when people with Tourette’s get together in support groups,” says Anderson, “they may pick up each other’s tics, although it’s usually for only a few hours.” It is not that TikTok is givingpeople tics; rather, it may be triggering tics in people who are searching social media for information about their condition. “Social media can’t create tics,” Anderson argues. “What it might do is trigger someone who is already susceptible.”Advertisement

“The safety and wellbeing of our community is our priority,” a TikTok spokesperson says. “We’re consulting with industry experts to better understand this specific experience. We’re proud that people living with Tourette syndrome have found a home on TikTok where they can fight stigma, find community and express themselves authentically.”

Meg, meanwhile, isn’t consciously imitating the influencers she sees on TikTok. “I’ve had people at my school tell me that I’m an attention seeker,” she says. “But if they were put in my shoes, they’d know that’s not true … Imagine straining your neck for hours a day and not being able to move. As much as I find myself hilarious and laugh about it with my friends, I would 1,000% choose not to have this over having the attention, any day.”

Suggestibility can trigger tics even in the classroom. Chloe (not her real name), 14, received a diagnosis of Tourette syndrome in July. “The tics started 18 months ago,” says her mother, Jill (also not her real name). “But she’d been suppressing them, until everything came out in September last year. The stress of the pandemic made it too difficult to hold them in.” Chloe had to take time off school this year. “During the time she was off,” says Jill, “another girl in her class developed tics.” Now both girls are in the same classroom, which poses a problem. “They set each other off,” Jill explains.

It should not be surprising that the stress of the pandemic is causing young people to present with tics, which are often exacerbated by stress and anxiety. It should also not be surprising that social media use may worsen tics in people with an underlying predisposition, in the same way that social media is known to correlate with other negative mental health outcomes. Stern advises patients to limit social media exposure for this reason.

What is surprising, and dispiriting, is the extent to which stigma persists around little-known conditions such as FND, and the lack of support available to people with tics. “Regardless of why these tics are happening,” says Jess Thom of the blog Tourette’s Hero, “whether they are functional (FND) or Tourette’s, the symptoms are real and not the fault of these young people who are in need of support that doesn’t really exist.”

NHS mental health services are at breaking point due to a post-pandemic backlog. “I’ve heard of families waiting between two and four years to be seen by Camhs,” says Anderson. Chloe is on a two-year waiting list to see a neurologist. Wacek is waiting to see a neurotherapist; in desperation, she called 111 recently, only to speak to a brusque and unsympathetic doctor. “He said I was doing it to myself,” she recalls. “Which made me feel worse, which made me have more seizures.”

In Wales, there is currently no paediatric neurologist who specialises in Tourette syndrome. “It’s shocking,” says Helen Reeves, 42, from Pembrokeshire. Her 13-year-old daughter developed sudden-onset tics in August. “You go to the paediatrician with symptoms and they ask me what I think it might be.” Reeves is campaigning for better provision: a petition she started has more than 7,000 signatures. It is a similar story in much of the UK. “There are hardly any pathways through to consultants,” says Paul Stevenson, 58, of Berwick-upon-Tweed. His son developed sudden-onset tics last year. “All these people are going through this traumatic period, and doctors are not fully understanding what is going on.”

In the absence of specialist support, young people can only hope their tics become more manageable with time. A couple of weekends ago, Meg went away with friends to Cardiff. It was the first ordinary thing she has managed since her tics came on. “That was a major thing,” she says. “To be a normal independent teenager.” Next year, her friends will apply to university. She wants to apply too, but is worried. “What if I had a seizure and no one knew what was going on?” says Meg. “The unknown is scary. But I don’t want to be afraid of my life.”

Many Tens Of Thousands Missing Out On PIP For Long Covid

November 16, 2021

With many thanks to Benefits And Work.

 

Many tens of thousands of people are missing out on PIP awards for Long Covid if official statistics are to be believed, Benefits and Work can reveal.

DWP figures show that it dealt with an average of just one claim for PIP a day where the main disabling condition was Long Covid, between March and July 2021.

Yet, according to the Office for National Statistics (ONS), 1.2 million people have Long Covid in the UK, 426,000 have had it for at least a year and 233,000 report that their ability to undertake daily activities has been “limited a lot” as a result.

Benefits and Work looks at the mystery of the missing claimants.

Records began
Whenever a claim for PIP is assessed the DWP decide which condition, where there is more than one, is the claimant’s main disabling condition. It is that condition which is recorded in the stats as the grounds of the claim. Secondary conditions are not recorded.

The DWP began recording claims where Long Covid was the main disabling condition from March 2021. Before that cases were just recorded according to the main symptom, such as fatigue or respiratory illness.

Between March and July, the DWP say there have been just 143 claims for PIP based on Long Covid, an average of fewer than one a day.

(Please note, the DWP say: Statistical disclosure control has been applied to this table to avoid the release of confidential data. Totals may not sum due to the disclosure control applied).

  • March 6 claims
  • April 27 claims
  • May 37 claims
  • June 31 claims
  • July 40 claims

108 of those claimants got an award.  This is a success rate of 76%, much higher than the average success rate for PIP, which is only around 42% for new PIP claims.

  • 35 got enhanced daily living
  • 63 got standard daily living
  • 8 got no daily living

  • 64 got enhanced mobility
  • 32 got standard mobility
  • 8 got no mobility

29 claimants got the enhanced rate of both components.

It is clear then, that where the DWP assesses an award as being based on a main disabling condition of Long Covid, there is a strong possibility of a PIP award and a good chance of getting the enhanced rate of at least one component.

So why have there been so few claims for PIP based on Long Covid?

Number of Long Covid cases.
The remarkably small number of claims is definitely not due to there being very few Long Covid cases that have lasted three months and are likely to last for at least another nine months.

According to figures released by the Office for National Statistics on 4 November, an estimated 1.2 million people in the UK have Long Covid, where symptoms have lasted for more than four weeks, as of 2 October. This is up from 1.1 million as of 5 September.

Of people with self-reported Long Covid:

  • 240,000 (20%) first had COVID-19 less than 12 weeks previously,
  • 849,000 (71%) first had COVID-19 at least 12 weeks previously,
  • 426,000 (35%) first had COVID-19 at least one year previously.

Long Covid has adversely affected the ability to carry out daily activities of 780,00 people, 65% of all those who have the condition.

233,000 (19%) report that their ability to undertake daily activities has been “limited a lot”

Fatigue is the most common symptom – experienced by 55% of those with self-reported long Covid – followed by shortness of breath (39%), loss of smell (33%) and difficulty concentrating (30%).

Aside from loss of smell, these are all symptoms that would be extremely relevant to both the daily living and mobility components of PIP.

Long Covid is most common in people aged 35-69 years old, but it is increasing amongst 12 to 16 years and 17 to 24 years, with the latter now comparable to people aged 35 to 69 years

So the majority of people with Long Covid would fit within the age range for a claim for PIP.

It’s worth noting that according to DWP statistics there were just six people getting attendance allowance for Long Covid and we couldn’t find any awards of disability living allowance for Long Covid at all.

According to a report by Imperial College London, the proportion of people with COVID-19 symptoms rapidly declines after the first four weeks, followed by a small drop by 12 weeks. However, there was little change after 12 weeks, even at a 150 day (5 months) follow-up.

Professor Paul Elliott, director of the REACT programme from Imperial’s School of Public Health, said: “Our findings do paint a concerning picture of the longer-term health consequences of COVID-19, which need to be accounted for in policy and planning”.

What this suggests is that anyone with Long Covid that has lasted more than 12 weeks with no signs of improvement, and which affects their mobility or ability to carry out the PIP daily living activities, should meet the PIP test that requires it to be likely that the effects of their condition will last for at least another nine months.

Based on these figures there should have been many tens of thousands of claims for PIP by now and the majority should have been successful.

More than one condition
One partial explanation for the very low numbers is that many people with Long Covid may also have other serious health conditions

According to ONS, Long Covid is more common in certain groups of people. These include

  • females,
  • people living in more deprived areas,
  • those working in health or social care,
  • those with another activity-limiting health condition or disability

So some people with Long Covid may already have a health condition that means they are in receipt of the highest rates of PIP and not eligible for a higher award because of Long Covid.

Or they may have received a higher award because of Long Covid but the DWP still classify their original health condition as their main disabling one.

But there is no suggestion by ONS that all, or even most, people with Long Covid have another serious health condition.

On its own, this cannot explain the DWP statistics.

Fiddling the figures
Having many tens of thousands of people awarded PIP for Long Covid would not be in the interests of the government. It would call into question whether the only measures of success in dealing with the pandemic are how many people die and whether the health service is overwhelmed.

Instead, it would suggest that how many people are infected is vitally important in measuring the long-term effects on individuals and on society.

In which case it would be in the interests of the government to ensure that the DWP classify awards that are in reality due to Long Covid as being based on any other health condition the claimant has, regardless of how severe that other condition really is.

So where, Long Covid was mentioned in a claim or a change of circumstances, careful checks would need to be made to ensure that wherever possible it wasn’t listed as the main disabling condition.

DWP staff are told in guidance obtained by Benefits and Work that in every case where a claimant reports that they have Long Covid, they must be referred to an assessment provider even if it could make no difference to their award..

“Even if a customer is already on enhanced and enhanced and has now reported Post/Long COVID syndrome as a condition you should still refer these cases to an AP – In-house decisions must not be made on any case where Post/Long COVID syndrome is stated as a disability.”

Is the reason for this that the DWP want to ensure that cases are not listed as being based on Long Covid wherever it is possible to avoid it?

Lack of awareness
There may be many people with Long covid who either don’t know about PIP or don’t think that they can claim PIP for Long Covid, so reducing the number of claims.

So, for example, people may wrongly think that they have to have had a positive test for COVID-19 before they can claim PIP for Long Covid.

They may think that they have to have been diagnosed with Long Covid to claim PIP on those grounds. This isn’t the case.

They may mistakenly think that you have to prove that you had a severe case of COVID-19 to make a claim. Again, this is incorrect.

They may think they have to have had it for at least a year, before they can make a claim. This isn’t right either.

Or they may just think that there is no chance of getting an award for Long Covid, so it isn’t worth trying. In fact, as we have seen, your chances of an award are a great deal higher than for most other conditions.

What we can do
It is entirely possible that the reason for the astonishingly low level of PIP awards for Long Covid is a combination of all these factors.

It will probably be impossible to prove whether the DWP is cooking the books. To do so, we would need to know, at the very least, how many claimants mentioned COVID-19 in their claim. And you can be certain that the DWP will say that they don’t record this data and it would be too expensive to attempt to create it.

But we can do something about the possible lack of awareness of the right to claim PIP for Long Covid, by simply spreading the word to anyone you know with the condition and by publicising the fact on social media and elsewhere.

People need to know that you can claim PIP for Long Covid and your chances of getting an award are high.

Because, if the ONS and DWP’s figures are correct, there are tens of thousands of people in the UK struggling to manage daily living activities who are missing out on financial help that would make it easier for them to do so.

Benefits and Work members can download a 7-page, Long Covid PIP supplement, to be used in conjunction with our Guide to PIP Claims and Reviews.

Strictly: Rose Ayling-Ellis Praised For Deaf Tribute Dance

November 16, 2021

Strictly star Rose Ayling-Ellis and her dance partner have been praised for paying tribute to the deaf community during their performance on Saturday.

The EastEnders actress, the first deaf contestant in the show’s history, danced alongside Giovanni Pernice to music by Clean Bandit and Zara Larsson.

But halfway through, the music turned to muffled noise and silence, as the pair danced on.

Anton Du Beke said it was “the greatest thing I’ve ever seen on the show.”

Former Strictly contestant JJ Chalmers said Ayling-Ellis was greatly helping “get us to where we want to be” with regards to attitudes around disability.

Du Beke and his fellow judges awarded a near-perfect 39 out of 40 combined score.

Head judge Shirley Ballas rose to her feet to salute the performance, saying: “This is a number that will be etched in my heart for a long time. It was absolutely beautiful.

“I’m sure the deaf community will be absolutely so proud of you,” she said.

Motsi Mabuse thanked Ayling-Ellis for including them and the viewers “in your world”. “Sometimes it’s more than scores and marks and dancing, sometimes it’s just a moment, and we just had that, and thank you so much.”

Craig Revel Horwood described the dance as “fabulous”.

‘Such a joy to be deaf’

The actress, 26, paid tribute to her dance partner Pernice live on the show after the performance for having helped her to deliver her powerful personal message.

“I feel very thankful for your determination to make this dance the most positive, happy dance, it can be, because you know that being deaf, there’s nothing wrong, it’s such a joy to be deaf, and I think that says a lot about you as a person,” she said.https://emp.bbc.co.uk/emp/SMPj/2.44.3/iframe.htmlMedia caption, Watch: Actor Rose Ayling-Ellis and her dance partner Giovanni Pernice prepare for their first live performance

The pair were also sent a video message from Hamilton Lodge School and College, a school for deaf children, whose pupils thanked them for using sign language. “You are great role models for us because you show that deaf and hearing people can work together to achieve anything,” they signed.

“And like you, we want more people to learn how to sign.”

Changing attitudes around deafness

Speaking on Radio 4’s Today programme on Monday, percussionist Dame Evelyn Glennie, who has been deaf since the age of 12, described Ayling-Ellis as being “a wonderful role model – in that she has so well integrated her situation with the general public and her fellow colleagues.”

She added: “I think probably the biggest impact has been the surge in the awareness of sign language,” she said, noting how it can also be used by non-deaf people who have trouble communicating vocally.

However, she did say she was “slightly concerned” about the silence in the performance, as many deaf people “do not live in a world of silence”.

“I think it’s the simplifying of things that becomes a problem and becomes quite confusing for the general public,” she added.

Former Strictly contestant and Invictus Games medallist JJ Chalmers told Today that Ayling-Ellis had been an “absolute triumph” on Strictly.

“We are making massive improvements and in-roads to where we need to be in society and where we need to be within broadcast, and that is absolutely wonderful,” said Chalmers, who was injured in a bomb blast in Afghanistan while serving as a Royal Marine.

“But again we’re speaking [about] it as a moment, as almost a shock. Whereas actually I would hope it would be slightly further down the road at this point.

“But it’s people like Rose that will get us to where we want to be.”

He added that it’s been “nice to see people talking about her disability, yes, but also being able to look beyond it.”

Chalmers, who felt his disability was hardly mentioned when he appeared on Strictly last year, complimented the producers for having “made adaptations to her [Ayling-Ellis]” rather than “her having to make adaptations to the programme”.

“That’s what society needs to do,” he said. “Society needs to realise that actually we need to be the ones that change that way we are set up and that we function in order that everyone is included.”

Members of the public also reacted positively to Ayling-Ellis’s performance, with one describing it as “beyond beautiful”.

Australian Welfare To Work Company Carrying Out Combined PIP And WCA Pilot

November 15, 2021

With many thanks to Benefits And Work.

 

The UK branch of an Australian company heavily involved in the welfare to work industry is carrying out a combined PIP and WCA pilot with almost 1,500 PIP claimants in the DWP’s ‘Health Transformation Area’, the government has revealed.

As we highlighted in September, the DWP are to introduce a major change to the assessment system for PIP and the work capability assessment for ESA and UC, with just one company carrying out both assessments for any given claimant from August 2023.

The DWP say that are not planning to have a single assessment for both PIP and the WCA. But the same company will carry out both assessments using the same software platform and sharing information between the two assessments where possible.

In a written answer to a parliamentary question, minister for disabled people Chloe Smith revealed that Advanced Personnel Management Group (UK) Limited employs the health professionals currently working in the DWP’s Health Transformation area. This is a pilot area in which the new assessment system is being trialled.

According to Companies House, Advanced Personnel Management Group (UK) started out with the bizarre name of ‘Macbeth 22’ in 2003, before becoming Pertemps People Development Group (PPDG), which was a contractor on the Work Programme.

PPDG was bought out by the Australian company Advanced Personnel Management (APM) in 2015 and its name was changed to make it part of the APM group. APM appointed the late Alan Cave, a former DWP employee who ran the Work Programme, as the chief executive of its UK arm.

In Australia APM are one of the main providers of Jobactive, which aims to move welfare benefits claimants back into work.

In 2019 APM bought out another leading a leading UK government Work and Health Programme provider, Ingeus. At the time, APM Chief Executive Michael Anghie said:

“Around the world, governments are facing many challenges such as ageing populations, increasing mental health issues, pressured health budgets, migration and integration, and technology that is changing job opportunities. Some important solutions to these challenges relate to work, health and behaviour change, which is what Ingeus and APM both do really well.”

The DWP say that they intend to recruit their own healthcare professionals for the Health Transformation Area, but have given no timetable for when this might happen.

You can read Smith’s full written answer on the Health transformation Programme here

America Sues Uber For Overcharging Disabled People

November 12, 2021

The US Justice Department (DoJ) is suing ride-hailing app Uber over allegations it has been overcharging disabled people.

The DoJ claims Uber’s “wait time” fees are discriminating against disabled passengers who need more than two minutes to get into a car.

It says Uber needs to comply with the Americans with Disabilities Act (ADA).

But Uber said wait time fees were not intended to apply to disabled riders and that it had been refunding fees.

Kristen Clarke, assistance attorney general for the DoJ’s civil rights division said the lawsuit aimed to send a “powerful message that Uber cannot penalise passengers with disabilities simply because they need more time to get into a car”.

Uber and other companies that provide transportation services “must ensure equal access for all people, including those with disabilities,” she added.

However, Uber said it disagreed that its policies were in violation of the the ADA.

A spokesman said the company had been in talks with the DoJ before the “surprising and disappointing” lawsuit.

Wait time fees were “never intended for riders who are ready at their designated pickup location but need more time to get into the car”, he said.

Uber had a policy of refunding wait time fees for disabled riders whenever they alerted the firm that they had been charged, the spokesman said.

“After a recent change last week, now any rider who certifies they are disabled will have fees automatically waived,” he added.

Uber’s disability issues

Uber began charging passengers for driver waiting times in 2016.

The firm says riders are charged on average less than 60 cents, and that wheelchair-accessible trips or Uber Assist trips do not have any wait time fees by default.

It is not the first time that Uber has found itself in hot water over disability issues.

In April, it was ordered to pay a blind woman in San Francisco $1.1m after she was refused rides on 14 occasions. In the UK, Paralympic medallist Jack Hunter-Spivey said in September that Uber and other taxi drivers regularly drove off when they saw that he was a wheelchair user.

A 2020 study by the University of Tennessee found that it takes 28% more income for a disabled person in the US to achieve the same standard of living as a non-disabled person.

Maria Town, president and chief executive of the American Association of People with Disabilities (AAPD), who has cerebral palsy, told the BBC that disabled people often face a “disproportionate economic burden, often as a result of realities they cannot change nor control”.

In addition to higher costs for health care, medical supplies and accessibility tools, the practice of applying extra fees for services, such as grocery delivery or rideshare wait times, adds an additional “tax” for disabled consumers, she said.

Ending the practice of charging wait-time fees for disabled riders would be a “step in the right direction toward economic equality and dignity”, Ms Town added.

The AAPD said it had seen many cases where Uber drivers had driven away when they saw that the passenger was using a wheelchair, crutches, a walker or a service dog.

“The presence of disability alone sometimes is enough, it’s a huge issue,” Ms Town said, recalling an incident from 2017 concerning a man in Texas who had a genetic disorder that affected his appearance.

She also said that it was unfair of Uber to expect disabled people to use only its wheelchair-accessible services or Uber Assist.

“It’s not fair on a number of fronts – there’s a limited supply of these cars on the road, but also people with disabilities may not want assistance,” she stressed.

Forcing someone to take an assist ride could cause “some tense driver-rider interactions that are completely unnecessary,” Ms Town said.

Claimant Commitment Sanctions Reintroduced For New Style ESA And JSA

November 11, 2021

With many thanks to Benefits And Work.

Claimant commitment sanctions have been reintroduced for new style ESA and JSA, the latest edition of the DWP newsletter Touchbase has revealed.

Sanctions relating to the claimant commitment had been suspended due to the pandemic. However, it is clear that it is now back to business as usual for the DWP, including sanctioning sick and disabled claimants.

According to Touchbase:

“This week a change was made to bring the obligations in new style JSA and ESA benefits in line with those in Universal Credit

“This will mean that, as is the case for Universal Credit claimants, if someone in receipt of new style JSA and ESA fails to do what they have agreed to in their Claimant Commitment without good reason – such as having or caring for a child, or a change to a health condition – their payments may be reduced for a set period. This is known as a sanction.

“All Claimant Commitments are tailored to a person’s personal circumstances and local jobs market, and claimants affected by this change are being informed of the introduction of the new process. Sanctions are only applied as a last resort when a claimant is not engaging with the commitment they have made. If someone disagrees with a decision they can ask for it to be looked at again.”

Rose Ayling Ellis On Strictly Inspires People To Learn BSL

November 10, 2021

Sir Ed Davey Explains His Reason For Having A Second Job

November 10, 2021

Hundred People Die Fighting For Terminal Illness Benefits

November 9, 2021

Around 100 people denied fast-tracked disability benefits for terminal illness died challenging the decision.

Currently, patients can access benefits more quickly if their clinician says they have six months or less to live.

In July the government promised to extend that to 12 months. Critics said it did not go far enough.

“Our priority is dealing with people’s claims quickly and compassionately,” the Department for Work and Pensions (DWP) said.

End-of-life charity Marie Curie said it had “serious concerns about the DWP’s ability to recognise when a claimant was approaching the end of life and was in desperate need of support”.

Dr Sam Royston, its director of policy and research, said if people died before their appeals were decided it was “highly likely they were living with a long-term or terminal illness”.

“Many of these people should have received fast-track access to support [originally],” he added.

Patients can currently access fast-tracked benefits at a higher rate by applying under the Special Rules for Terminal Illness (SRTI).

They need to submit a form signed by their clinician, saying it is probable they will die within six months.

The DWP said of those who applied “the majority received the highest possible award and were paid within three days of making a claim”.

But charities said the system was flawed.

The Motor Neurone Disease (MND) Association said the unpredictability of the speed with which a person with MND might deteriorate, meant it was difficult for neurologists to give accurate prognoses.

Susie Rabin, head of policy and campaigns at the MND Association, said that made it difficult for people to access benefits through the special rules.

Dr Catherine Millington-Sanders, the clinical lead for palliative and end of life care for the Royal College of GPs, added doctors “still faced uncertainty when determining exactly how long someone has got to live”.

“It makes little sense to have a rigidly set time cap to be a determining factor,” she said.

Affected families and charities said the current process was “overly complex and stressful” and it remained unclear when reforms would happen.

They have also called for the government to go further and scrap the requirement for people on terminal illness benefits to be reassessed every three years.

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‘We’ve been forgotten’

Helena Reynolds, from Essex, who is terminally ill with intestinal failure, said the current six-month rule was “pointless” because “terminal meant terminal”.

“It’s like we’ve been forgotten. All we’re asking for is a little dignity; we shouldn’t have to beg for our benefits when we get ill,” she said.

Mrs Reynolds was aged 14 when she was diagnosed with Crohn’s disease and had 23 operations on her abdomen before she was awarded Disability Living Allowance (DLA) for life in 1991.

When Personal Independence Payment (PIP) replaced DLA in 2019, her benefits were initially cut, but later reinstated on appeal.

This year, although her doctor said her condition would “almost certainly…prove fatal at some point”, they could not say she had less than six months to live.

Instead, she had to re-apply for PIP under the standard route and was given a 10-year PIP award. The longest possible award under special rules would have been for three years.

Paul Alexander, policy manager at disability equality charity Scope, said: “This is a clear example of the system being overly complex, stressful and inconsistent.”

“It doesn’t make sense that someone would go from getting a ‘lifetime’ award, to being refused support from its successor benefit, despite being terminally ill,” he added.

Dr Royston from Marie Curie said few people awarded benefits under special rules lived beyond three years but for the small number who did it was “inappropriate and insensitive” they had to make a new application or risk losing support.

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‘It was degrading’

Christine McCluskey, from Dundee, Scotland, had a history of illnesses including Crohn’s Disease, osteoporosis, and suffering a stroke in 2005.

She was told her PIP would be stopped and that DWP would try to recoup an overpayment of Employment Support Allowance after a physical assessment, which described her as having a “slim build” and being a “pleasant lady to assess”.

She weighed around 5st 6lbs (34.4kg) at the time and was being fed by a drip, her daughter Michelle said.

Then she received a terminal lung cancer diagnosis in July 2018.

She submitted a form from her doctor to the DWP about her separate terminal diagnosis but a letter came back in September 2018, a month later, to say that information – the form – required her to start a fresh claim. She died the same day aged 61.

Michelle believes the application process needs to change so fast-tracked support can be paid automatically to people with a terminal diagnosis.

It was “degrading” for a person to need to submit a form putting a time frame on their own death, she said.

Michelle, who previously shared pictures of her mother with national newspapers to highlight her experience, said: “You just have to look at her to see she wasn’t well and that was before she had cancer.”

In February 2019, a tribunal ruled Christine’s PIP should not have been cut. The DWP paid the arrears owed.

A new benefit called Adult Disability Payment was due to replace PIP in Scotland from spring 2022, which would use a clinician’s prognosis of their patient rather than any time limit.

Income-based benefits still administered by the DWP, such as Universal Credit, would however still use the DWP’s end-of-life definition, which has led to concerns of a developing two-tier system for people applying for benefits in Scotland.

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What happens next?

Madeleine Moon, former Labour MP for Bridgend, previously sponsored a Private Members’ Bill in 2018 which proposed to remove the six-month time limit and replace it with a clinical judgment made by an appropriate health professional.

Parliamentary time ran out to discuss the bill beyond its first reading in the House of Commons and then Mrs Moon lost her seat. Jessica Morden, Labour MP for Newport East, has now taken up the bill again.

Mrs Moon, whose husband Steve died from motor neurone disease in 2015, said: “The cruelty, if not the inhumanity, of the current system is shocking.https://emp.bbc.co.uk/emp/SMPj/2.44.3/iframe.htmlMedia caption, Madeleine Moon gave an emotional speech in the House of Commons

“I’m glad the government has accepted the current rules are wrong.

“Most people in the initial shock [of receiving a terminal diagnosis] aren’t thinking about benefits, they are thinking what have I got to do to live whatever time I have left.

“You need to plan for the new future and you need to stabilise the family’s finances. What you can’t do is spend the time going through the long time to access PIP.”

Northern Ireland’s communities minister Deirdre Hargey has committed to bring forward legislation to widen the eligibility to people with less than a year to live, before the next assembly election is due in May 2022.

In July, then-minister for disabled people Justin Tomlinson said Westminster would make the same change for Universal Credit and Employment and Support Allowance (ESA) next year and Attendance Allowance, Disability Living Allowance and PIP “when Parliamentary time allowed”.

The DWP reiterated it would make those changes “so more people could get the vital support they needed”.

University of York Professor of Law Charlotte O’Brien, a specialist in welfare law, said it was a different process to change the rules for universal credit and ESA because those rules were in secondary legislation regulations, whereas DLA, PIP and Attendance Allowance were set out in the Welfare Reform Act 2012, so a new Act of Parliament could be required.

“The chances of the government proposing a bill specifically for this are quite slight, as are the chances of them having the time and the Parliamentary bandwidth,” Prof O’Brien said.

Philippa Day’s Sister Writes For The Guardian

November 9, 2021

In the grounds of a mental health hospital my sister, Philippa Day, looked at me with tear-filled eyes and told me that the Department for Work and Pensions (DWP)’s actions would kill her, and that when they did she wanted me to advocate for her so that it would never happen again. I looked at her gravely and made a solemn promise that if anyone took her from me I would do exactly that.

Philippa had emotionally unstable personality disorder, agoraphobia, anxiety, depression and type 1 diabetes. In November 2018 Philippa was advised by her community psychiatric nurse (CPN) that she may have been entitled to more benefits than she was receiving and was asked to consider applying for personal independence payments (Pip).Advertisement

I accompanied Philippa to an organisation called Framework in Nottingham to receive advice around applying for Pip and to start the application. Philippa completed the application with the assistance of her mental health and diabetic teams and posted the form herself, feeling a great sense of achievement that she had walked to the postbox unaccompanied.

In March 2019, Philippa discovered that her disability benefits had been stopped in January that year and she was only receiving the standard allowance – at this time about £60 a week. What transpired after was a downward spiral hastened by poverty and the difficulty of having her benefits reinstated. Despite numerous phone calls from both professionals and Philippa, there continued to be mistakes in the handling of her claim. Philippa called the DWP herself, sobbing while discussing her issues – recordings of these calls were included as evidence in our claim. She informed them that she was “starving and cold” and that she “literally needed a reason to live”. When she ended the call, my sister still said thank you.

Notably, in July-August 2019 my sister received a letter instructing her to attend an assessment in the next city in the early morning. Her CPN appealed against this decision, highlighting that Philippa would not be able to engage in a face-to-face assessment outside her home due to her agoraphobia and complex mental health issues and that to do so would place her at significant risk of harm. Her community mental health team and her family worked tirelessly to mitigate the effects of this trip, however we were unsuccessful and in the early hours of 8 August 2019 my sister took an overdose that she would not survive.

In the following pre-inquest reviews and the inquest itself, we continued to suffer from the cold and unyielding walls of the DWP and Capita, the private firm that carries out some benefits assessments. In a pre-inquest review it had been heavily implied by a Capita lawyer that I had written my sister’s suicide note, which directly implicates the DWP, for political gain. This was easily disproven with time stamps, however the outrage I felt remained. In the inquest itself, my mother, who had not been called to give evidence, felt the need to submit an oral statement detailing that she loved her daughter. My sister’s CPN, who was highly commended by the coroner for her work, gave evidence for two days on the medical interventions offered to Philippa and the impact that having her disability benefits removed had on her mental state. In a rare move, on the last day of the inquest the coroner, Gordon Clow, chose to read his conclusions in full. Hour after hour we listened to how 28 individual mistakes made by both the DWP and Capita led to Philippa’s death.

In Clow’s conclusion, he states “the failure to administer the claim in such a way to avoid exacerbating Philippa Day’s pre-existing mental health problems was the predominant factor” in my sister taking an overdose. We are the first family to have received compensation regarding a benefit-related death, but we are not the only family that has suffered. Organisations and individuals are trying to hold politicians to account over these failures. I recently took part in Rethink’s campaign Stop Benefit Deaths, where individuals are invited to email the secretary of state urging them to meet with bereaved families, and calling for a public inquiry.

In my campaigning against benefit deaths, I have had the privilege to meet others who lost their loved ones in similar circumstances. This included meeting at the Museum of Austerity, a VR piece that recently premiered at the London film festival featuring holograms of 10 people who lost their lives, with their stories told by family members. There was the power of shared experience in that room as we were led family by family to experience the piece alone.

While going through the processes of applying for disability benefits, which could be described as arduous, disabled people feel alone and scared that the lifeline of their payments will be removed. My sister’s case and others like it have highlighted longstanding and systemic issues with the benefits system in the UK and have further damaged the public’s confidence in the DWP. This can only be rectified by a public inquiry, meaningful change and transparency about how benefits applications affect disabled people.

Capita Pay Substantial Compensation To Family Of Philippa Day

November 8, 2021

With many thanks to Benefits And Work.

Capita have paid ‘substantial’ compensation to the family of Philippa Day, a single parent who took her own life after she was told that she had to attend a face-to-face PIP assessment in spite of her anxiety, depression and agoraphobia and in defiance of pleas by her CPN. It is believed to be the first such payment made by a DWP health assessment provider.

Ever since her death in 2019, Philippa’s family have been fighting to make the DWP and Capita admit their role in her death and to change the way vulnerable claimants are dealt with.

In a call the DWP tried to prevent the coroner making public, a clearly very distressed, sometimes crying, Philippa told a DWP call handler she was “literally starving and cold”, “genuinely can’t survive like this for much longer”, was “in so much debt”, “literally cannot leave the house”, and needed “a reason to live”.

However, the call handler simply asked her if there was anyone in her family or a local charity who could help her and told her that she needed to talk to Capita about when she would have her assessment.

No note was made on Philippa’s file of the level of distress she was in and the DWP’s six-point plan to be used when claimants express suicidal intent was not used.

The call handler told the inquest that she had heard many claimants crying and saying similar things.

Philippa’s family sued both the DWP and Capita for negligence.

Capita have now settled out of court, paying a sum that will provide for Philippa’s son’s upbringing.

Following the settlement, Imogen Day, Philippa’s sister said:

“Our family have always maintained that my sister’s treatment by the Capita, on behalf of the DWP directly impacted her mental state and in the end is the reason for her death.

“Capita’s wall of bureaucracy, with no consideration for Philippa’s mental state, exacerbated her despair at her debt and poverty. She was met with cold, uncaring call operators who would not listen to her cries for help. However we welcome the opportunity to meet with Capita to discuss improvements to their service.”

“This settlement will in some measure provide for Philippa’s family and a materially stable upbringing for Philippa’s son, but he has lost his mother, and there is nothing Capita can do to put right the wrong that contributed to Philippa’s death.”

Leigh Day partner Merry Varney, who represented the family, said:

“Through this settlement, and the public investigation into how the DWP and its agents treated Philippa, a young mother with physical and mental health conditions which led to damning findings by the Coroner, the law has delivered some accountability for and recognition of the wrongs Philippa suffered and the devastating impact on her family.

“Capita has shown acceptance of their failures and a willingness to ensure their mistakes are not repeated, however there remain too many examples of the DWP, which controls the financial circumstances of the majority of people too sick to work, acting inhumanely to those receiving benefits and a continued resistance by the DWP to transparent investigations into benefit related deaths.

“Until the DWP changes its attitude, people like Philippa and her family remain at risk of gross human rights violations and ‘benefit related deaths’ are just another example of preventable deaths of people with disabilities occurring without any proper investigation or scrutiny.”

The DWP have refused to comment on the court case, which is now believed to be closed, but a Capita spokesperson told the Guardian:

We are very sorry for the mistakes we made in processing Philippa’s personal independence payment (PIP) claim and the additional stress this caused her. In partnership with the DWP, we have considered and reviewed the coroner’s report and we are implementing all the recommendations that are relevant to us.

“Following this incident, we have strengthened our processes and we are working to continuously improve and deliver a professional, efficient and kind service for every PIP applicant we assess.”

The compensation payment is the first of its kind by a health assessment company to a claimant’s family and will no doubt cause major concern both to the DWP and to the assessment providers in case it is the first of many.

You can read the full story on the Leigh Day website and in the Guardian

Tailoring Up

November 5, 2021

With many thanks to Benefits And Work.

 

The DWP are experimenting with a “Tailoring Up” approach to sanctions for disabled claimants which will allow job coaches to make activities either voluntary or mandatory on a personal whim. The DWP are doing no monitoring of the programme whatsoever to ensure that particular groups of claimants are not discriminated against.

The Tailoring Up programme claims to focus on “what a claimant can do, rather than what

they can’t”. It allows job coaches to make employment support activities such as training or work experience voluntary, so that the claimant is not at risk of being sanctioned.

However, job coaches are free to make the activities mandatory and therefore subject to sanctions for any claimant “where appropriate”.

Attending meetings with job coaches will continue to be a mandatory activity.

According to a response by minister for disabled people Chloe Smith to questions by the Commons work and pensions committee:

“Tailoring Up is a new way to deliver our existing conditionality policy for people with health conditions. The approach focuses on what a claimant can do, rather than what they can’t, and commitments are built up and tailored to the individual’s situation. Tailoring Up encourages a voluntary first approach to allow a claimant to test out employment support activities without risk of a sanction while they are still building their knowledge and understanding of the impacts of their health condition.

“The Tailoring Up approach does not remove the option to apply mandatory conditionality. The approach is tailored to each individual dependent on their personal circumstances. Many people will have a blend of commitments, some voluntary and some mandatory, and we retain the mandatory requirement for claimants to attend any interviews set.

“All commitments are agreed in advance with the claimant and Tailoring Up reduces the likelihood of any sanction referrals by applying a voluntary first approach where applicable. However, claimants may still be set mandatory commitments if the work coach feels it is appropriate; and should the claimants fail to comply without a good cause, they could be subject to a sanction.”

There are many objections to this approach.

The most obvious is that if you want to make claimants feel safe to try out work-related activities then the only sensible thing to do is remove the threat of sanctions altogether. The rates of benefits like ESA, JSA and UC are now so low that the idea that a significant number of claimants would prefer to remain in poverty on benefits rather than work if they could is far-fetched.

The Tailoring Up approach applies not just to claimants “found to have Limited Capability to Work following their WCA, on both New Style ESA and Universal Credit”. It also applies to “everyone on the health journey providing medical evidence before their WCA”. In other words, claimants who will eventually be placed in the support group can still face an arbitrary risk of sanctions at the whim of a job coach, whilst they are waiting to have their WCA.

It’s also clear that this new approach makes discrimination, both at the institutional level and at the individual job coach level, even more likely and virtually impossible to expose.

Under Tailoring Up, job coaches have the power to choose how many sanctions threats they choose to load on any individual claimant. Where a job coach is sceptical about, for example, ME/CFS, Long Covid or mental health issues they will have the power to make more activities mandatory for claimants with those conditions.

Smith was unable to answer a whole range of questions about the scheme from the work and pensions committee because:

“We do not collect data which identifies how many claimants are in receipt of voluntary as opposed to mandatory commitments.”

This means the department will have no way of checking whether the sanctions regime is being applied in a discriminatory way, with claimants with particular conditions or from particular ethnic backgrounds, for example, being more likely to be subject to sanctions.

So far, no guidance has been published on how job coaches should decide who will be subject to mandatory activities. This means that claimants will have no way of measuring whether they are being treated fairly and according to DWP policies.

Benefits and Work has requested copies of any such guidance, but the DWP often ignores the rules when it comes to Freedom of Information requests.

The Tailoring Up approach is initially being trialled in 11 Health Model Offices, with a view to rolling it out nationally. The 11 offices are:

Aberdare, Croydon, Fraserburgh, Gosport, Grantham, Leeds Eastgate, Paisley, Slough, Stourbridge,

Sunderland, Wigan.

Benefits and Work members concerned about facing sanctions can download a copy of our 35 page guide to Ways to prevent and overturn ESA and UC sanctions from the ESA and UC resources page.

You can read the correspondence on Tailoring Up here.

Climate Change: Why Are Disabled People So Affected By The Climate Crisis?

November 5, 2021

Israeli minister Karine Elharrar made headlines around the world when it emerged she couldn’t attend the COP26 summit on Monday because it wasn’t wheelchair-accessible.

For many disabled people, it was a reflection of the way they often feel ignored or left out of conversations about climate change.

Yet disabled people are among those most “adversely affected in an emergency”, according to the United Nations Human Rights Council. And those emergencies – from wildfires to flooding – are likely to become more frequent because of the climate crisis.

So why are disabled people so affected by climate change and what can we do about it?

Heatstroke and dehydration

In July 2018, a heatwave hit Montreal, Canada. Temperatures soared to 35.5C (95.9F) for days. Hospitals became busy with those experiencing the effects of heat and 61 people died. A quarter of those had schizophrenia.

“That’s 500 times their share of the population,” says Prof Sébastien Jodoin, a climate change specialist from McGill University, who has multiple sclerosis and studies the relationship between human rights, disability and the climate crisis.

Many people with schizophrenia take anti-psychotic medication to treat their symptoms. It can make patients less tolerant to heat, increasing the risk of heatstroke and severe dehydration, which can prove fatal. 

Professor Jodoin says it’s the lack of communication between authorities and at-risk communities that exacerbates these situations.

“People who live with schizophrenia tend to have less of a social network, they tend to be more poor,” he says. “These are the underlying effects of how disability will increase vulnerability or engender vulnerability, to climate change.”

Climate change increases the risk of the hot, dry weather, which is likely to lead to more heatwaves and fuel wildfires. A warming atmosphere also makes extreme rainfall and flooding more likely.

Professor Jodoin says what happened in Montreal is a snapshot of what is to come.

In 2019, California was hit with a series of outages as companies shut down power to prevent wildfires spreading. Gerald Niimi, from Santa Rosa in North California, had managed a chronic lung disease for years and relied on an oxygen ventilator to help him breathe.

But when the power-outage hit, his ventilator stopped. He and his wife fled their home and desperately searched for a working vent, but failed. Gerald died two days later.

Energy supplier Pacific Gas & Electric later admitted it had failed to notify thousands of customers, including hundreds with medical conditions, before shutting off their power.

During the wildfires, some disabled Californians had difficulty fleeing their homes. Those who were able to escape found many of the emergency centres providing water, bathrooms and a safe space, were not accessible.

Floods and rubber dinghies

This summer, 12 disabled care home residents in the town of Sinzig, in Germany, died when sudden flooding hit – they had been unable to evacuate. The floods have been linked to climate change by scientists and politicians.

Dr Charles Williams, a climate scientist and research fellow at the University of Bristol, has spinal muscular atrophy (SMA). “As a wheelchair-user, I would not be able to get into a rubber dinghy to be evacuated,” he says.

Similar stories emerged after Hurricane Katrina hit New Orleans in 2005, causing serious flooding. A report, by the US-based National Council on Disabilities, found disabled people struggled to access support.

Most evacuation busses did not have wheelchair lifts, many of the emergency shelters were inaccessible and people with visual and hearing impairments were unable to obtain local safety information.

Weather-related disasters, such as Hurricane Katrina, have increased five-fold over the past 50 years. So what needs to happen to better support disabled people?

Andy Greene, from Disabled People Against Cuts (DPAC), believes disabled people need to be more involved in climate change discussions – particularly when new laws are brought in.

He says governments often overlook the impact of legislation on those who are disabled, pointing to the crackdown on plastic straws as one example.

After a Sir David Attenborough documentary highlighted how take-away containers were littering the seas, a public outcry led to legislation banning single-use plastic straws.

The new law included an exemption for those who need to use plastic straws for medical reasons, but Mr Greene says many disabled people were still adversely affected as they rely on the availability of plastic straws to drink independently.

Replacements like metal or pasta straws are hard and can cause damage if, for instance, the person using them were to slip or spasm while drinking. And paper straws tend to collapse. That’s why bendable plastic is important for those who can’t pick up a cup.

“Disabled people [who use straws] are a very small group, but this ban has a real impact on them – while having a minimal actual real impact on the structural effects of climate change and global warming,” he says.

He believes it’s another example of disabled people being forgotten and left behind.

The term “eco-ableism” is now being used to describe this sort of discrimination. It refers to the failure of decision-makers and activists to consider that some environmental actions make life more difficult for disabled people – such as removing disabled parking bays to make way for cycle lanes.

What next?

At COP26, some side events will specifically explore disability and climate change. One event will look at inclusive designs for climate resilient cities, while another will highlight the impact of climate change on the health of disabled people.

Prof Jodoin says governments often do not think of the “specific requirements of people with disabilities”. But he sees COP26 as “an opportunity to push disability rights”.

Dr Williams says “there are reasons to be hopeful” about tackling climate change. He says the problem so far has been the “apparent lack of motivation and willpower” to make changes on an individual and political level.

“Only time will tell if these attitudes will change. There has been a dramatic shift in the last 10 years, but this needs to continue.”

 

Cancer Patients With Learning Disabilities Sought

November 4, 2021

Charities are seeking volunteers for a research project looking into the experiences of people living with learning disabilities and cancer.

Macmillan Cancer Support and Midland Mencap have launched the joint project in Birmingham and North Warwickshire.

The project, due to conclude next spring, hopes to better understand patients’ experiences and find out how services can be improved.

Researchers are looking to speak to patients as well as families and carers who would be happy to share their experiences for the project.Quote Message: This project will give us an invaluable insight into the experiences of people with learning disabilities and cancer, and ultimately help us achieve better experiences for them, and help us improve the personalised care and support we offer.” from Hannah Sanderson Macmillan Cancer Support

This project will give us an invaluable insight into the experiences of people with learning disabilities and cancer, and ultimately help us achieve better experiences for them, and help us improve the personalised care and support we offer.”Hannah SandersonMacmillan Cancer Support.

Ecopunk: Dungeons And Dragons Versus The Environment

November 3, 2021

When Liam Hevey started to experience climate anxiety he wanted a way to make other people care for the environment as much as he did. So the autistic designer created a role-play game to save the planet in the hope players might continue the battle in the real world.

With players gathered round the table, a session of Ecopunk is under way, a role-playing game set in 2044. It’s like Dungeons and Dragons but with more politics and environmental collapse.

To play, all you need is the game book and some character sheets to keep track of your energy, skills and inventory. You also need a lot of dice.

Its designer is Liam Hevey from Nunhead in south-east London. He is autistic and grew up to think with a large degree of what he calls “political dissidence”. He didn’t like or understand the way the world runs, with its “irrational” norms and ideas that everyone else seems to accept.

This is a familiar feeling to many autistic people – if something in the world doesn’t make sense then it needs to be corrected and smoothed out.

It has led Liam to have a passion for environmentalism, and frustration at the lack of coordinated action to save the planet.

He refers to the present climate emergency as “the defining moment” of his life and in a dark mood he adds it could well be the thing that will “end it”.

Your imagination, and the rules, are the only limits in Ecopunk but the story is dark, dystopian and perhaps a little too familiar.

After failing to act in the early 21st century, the climate is in fast decline, and the human race is in a death spiral. You could find yourself playing the part of a disillusioned hacker with a love for tofu, a bitter soldier with a cybernetic arm, or a botanist with a knack for brewing. They are Punks, they’re out-of-step with society and they are fighting to keep humanity alive.

Liam explains that the story starts with the crisis going into full swing.

“Politics has broken down and reformed and restructured around a new reality. We no longer live in this period of capitalism … and America has kind of fallen apart.”

Liam has imagined three new superpowers have risen to the top: The Central African Socialist Union, the Chinese Empire and the European Commune.

Each offers their own ideological response to the world’s problems: imperialism, neo-Marxist collectivism, or eco-fascism respectively.

You want complex world building? You’ve got complex world building.

The players, or Punks, exist at the edges of these nations, and, as their name suggests, they do not participate in the politics but still have to engage with them to survive.

Like fellow autistic campaigner Greta Thunberg, Liam has suffered from climate anxiety which is now being talked about more, especially amongst younger people. And, like Greta, he too experienced panic attacks when he was younger.

Creating the game has helped give him some control back over the situation.

Months of writing and play-testing have culminated in hundreds of pages of rules, missions, mechanics and lore.

Liam realises that a numbers-obsessed man who enjoys socialising with people over dice and scoresheets is a bit of an autistic stereotype. It’s this aspect of role-play games which he thinks gives it that nerdy image.

But Liam says much of his interest is in the role-playing part of the game where you don another personality. It’s not mathematical, it’s more about slipping into the shoes of a character, to think how they think and interact in this fantasy world.

He found that role-playing as characters who were, for example, charismatic or confident, helped him apply this to himself.

I put it to him that this sounds like masking, where autistic people adopt neurotypical behaviours to fit in, which can be very tiring and often means suppressing your natural autistic traits.

Liam says it’s not the same for him, but recognises the similarities and says role-playing provides a “safe space” for other people to practice masking

During October, Liam ran a successful Kickstarter campaign to fundraise just under £15,000 for Ecopunk. Kickstarter is a website which, as the name suggests, helps people gather funding to start projects the community believes in. He was helped by Arts Council England, Shape Arts and a team of artists.

A basic version of the game is already available for free as a PDF download – the fundraising will go towards a “professionally produced” release with extensive artwork, and a physical version which he is keen to say will be carbon neutral.

Liam wants the game to make people think more about environmental issues and hopes players will leave the game and “fight for the future” like they did when they played.

COP26: Boris Johnson Apologises To Minister Over Wheelchair Access

November 2, 2021

Boris Johnson has apologised to an Israeli minister who was unable to access COP26 in her wheelchair.

Karine Elharrar was forced to return to her hotel 50 miles away on Monday after waiting outside for two hours.

The UK prime minister told her he was sorry for the “confusion” when the energy minister joined a meeting with him and Israel’s PM, Naftali Bennett.

Mr Bennett thanked his British counterpart for his “quick intervention on this unfortunate incident”.

And he called it a “learning opportunity for all of us in the importance of accessibility for all”, a statement backed by Mr Johnson.

Ms Elharrar – who has muscular dystrophy – told BBC News she had gone into the climate summit on Tuesday “very easily” and it was “quite a different experience”.

But she said Monday’s incident had been “a good experience to make sure the next UN conference will be accessible”.

The minister added: “We can talk about accessibility and the rights of people with disabilities, but in life we need to implement all the conventions and all the regulations and that was an experience that showed that we need to pay attention to all the details everywhere.

“I am sure it will be different in the future.”

Earlier, the UK’s Environment Secretary, George Eustice, said the incident involving Ms Elharrar was “deeply regrettable” and that the UK government had apologised.

But disability charity Scope said it was “inexcusable” and the organisers “should have seen this coming”.https://emp.bbc.co.uk/emp/SMPj/2.44.0/iframe.htmlMedia caption, Israeli minister Karine Elharrar hopes for better wheelchair access at conferences

Mr Eustice appeared to blame the Israeli delegation for the fact Ms Elharrar could not get into the venue, telling BBC Radio 4’s Today programme: “What would normally happen in this situation is that Israel would have communicated that they had that particular need for their minister.

“There was obviously something that went wrong in this instance and they weren’t aware of that so they hadn’t made the right provisions at that particular entrance she was coming too.”

He added: “I know that at most of the other entrances there [is] wheelchair access there. It was because she obviously came to an entrance that didn’t have that provision.”

But a spokesman from the Israeli Embassy in London said the country’s delegation to the summit had “communicated over the past several weeks all the details about the minister’s requirements”.

Mr Eustice faced some criticism for the remarks, with Lib Dem peer Lady Ludford tweeting: “Not the most gracious of responses for the COP26 host to blame the guest.”https://emp.bbc.co.uk/emp/SMPj/2.44.0/iframe.htmlMedia caption, Environment Secretary George Eustice: COP26 wheelchair access problems “deeply regrettable”

On Monday, Ms Elharrar told Israel’s Channel 12 that she could not get onto the grounds of the conference because the only options were to either walk or take a shuttle that was not suitable for a wheelchair.

Her office told the Times of Israel she waited outside the venue in Glasgow for two hours, and she was eventually forced to return to her hotel in the Scottish capital Edinburgh 80km (50 miles) away.

On Monday, she tweeted that it was “sad” the UN “does not provide accessibility to its events”.

And an official in Israeli Prime Minister Naftali Bennett’s delegation said they had formally complained to organisers.

‘Genuine mistake’

Reacting to the incident, Alison Kerry of Scope said: “It is inexcusable that the organisers of COP26 haven’t made all of their venue accessible for disabled people.

“No one should be excluded from participating in an event that is addressing one of the biggest issues of our time.”

She added: “The organisers should have seen this coming. With one in five of us being disabled, it should come as no surprise that a venue hosting tens of thousands of delegates will need to make a significant number of reasonable adjustments.

“It’s high time accessibility is built in from the start and not an afterthought.”

The organisers of COP26 told the BBC that the permanent structures for the conference were fully wheelchair accessible.

A COP26 spokeswoman said: “This was a genuine mistake and we have apologised to Minister Elharrar -we look forward to her attendance at COP26 today [Tuesday].

“We remain committed to an inclusive event accessible to all and the venue was designed to facilitate that.”

COP26: Wheelchair-Using Minister Karine Elharrar Unable To Attend Summit

November 2, 2021

An Israeli minister has said she could not attend the COP26 summit on Monday because it was not wheelchair accessible.

Karine Elharrar tweeted that it was “sad” the UN “does not provide accessibility to its events”.

An official in Israeli Prime Minister Naftali Bennett’s delegation said they had formally complained to organisers.

And Mr Bennett said he would not attend on Tuesday if Ms Elharrar could not access the summit, the official added.

The UK’s Environment Secretary, George Eustice, said the incident was “deeply regrettable” and the government had apologised to Ms Elharrar – who has muscular dystrophy.

But he also appeared to blame the Israeli delegation, telling BBC Radio 4’s Today programme: “What would normally happen in this situation is that Israel would have communicated that they had that particular need for their minister.

“There was obviously something that went wrong in this instance and they weren’t aware of that so they hadn’t made the right provisions at that particular entrance she was coming too.”

Mr Eustice added: “I know that at most of the other entrances there [is] wheelchair access there. It was because she obviously came to an entrance that didn’t have that provision.”

He faced some criticism for the remarks, with Lib Dem peer Lady Ludford tweeting: “Not the most gracious of responses for the COP26 host to blame the guest.”

Ms Elharrar reportedly told Israel’s Channel 12 that she could not get onto the grounds of the conference because the only options were to either walk or take a shuttle that was not suitable for a wheelchair.

Her office told the Times of Israel she waited outside the venue in Glasgow for two hours, and she was eventually forced to return to her hotel in the Scottish capital Edinburgh 80km (50 miles) away.

An official in the Israeli PM’s delegation said Mr Bennett had told UK Prime Minister Boris Johnson about the incident, and Mr Johnson had invited Ms Elharrar to join a meeting between the two prime ministers on Tuesday.

On Monday, UK Foreign Office Minister James Cleverly said he was “deeply disappointed and frustrated” Ms Elharrar could not access the summit.

“The COP venue is designed to be accessible for all. I have spoken to the minister about this and I look forward to meeting her [on Tuesday],” he tweeted.

No One Should Ever Have The Power To Choose When Discrimination Is OK

November 2, 2021

As the Tokyo Paralympic Games drew to a close, Australian prime minister Scott Morrison announced the federal government would facilitate equal prize money for Olympic and Paralympic medallists. My performances, and those of my teammates, were to be valued equally, through a gesture that acknowledged our years of toil in pursuit of sporting excellence. After 61 years of Australian participation at the Paralympic Games, were our lawmakers finally recognising the contributions people with disability make in this country?

Perhaps, but I’m not so sure. Heartbreakingly, our nation’s laws still fail to protect the most fundamental human rights of my community, with some laws existing solely to perpetuate such violations. This failure to protect my community has persisted since federation, and until the government takes action to resolve it, any declaration of equality serves merely as a glimpse of how things should be for all people with disabilities – not just Paralympians.

Since 1901, Australia has insisted on calculating the ‘burden’ of disability without considering the contributions people with disabilities can make to society. One of our nation’s first laws not only implemented the infamous White Australia Policy, but also an ‘able-bodied Australia policy’ prohibiting people with disabilities or mental health conditions from entering the country. This policy persisted during the refugee intake in the aftermath of the Second World War. Under the pretence of humanitarianism, Australia categorically excluded people with disabilities, including children, from qualifying for our protection. Cruelly, this intent to discriminate against disability tore families apart, with some parents pressured into leaving such children behind.Advertisement

Our history is shocking, but these principles of discrimination remain entrenched in the actions of our government. The migration policy makes it clear: our government does not want people with disabilities. Lawmakers were so intent on holding onto this discrimination that when legislating the Disability Discrimination Act, they made sure to exempt the Migration Act. This exemption allows our government to exclude people solely on the basis of their disability. It is astounding that laws seeking to prevent discrimination can also grant permission for that discrimination to continue against the very people it’s supposed to protect. No one should ever have the power to choose when discrimination is OK.

The consequences of this facade have already played out in the most tragic circumstances. Pakistani refugee, Shiraz Kiane, applied three time in four years to have his family join him in Australia. The only problem was, his daughter had cerebral palsy. In breach of human rights principles, applications for his family were rejected due to the estimated financial burden his daughter posed for Australia. He could never return home for fear of religious persecution and the Australian government could not muster the compassion to unite him with his family. In 2001, while suffering from depression, Mr Kiane set himself on fire outside Parliament House in Canberra. Several weeks later, he died from the burns he sustained.

This should never have happened, and yet nothing changed. Recently, the issuing of deportation notices to families on the basis that their child’s disability was a national burden is, in my opinion, one of the most shameful policies pursued in this country. Some of these children were born in Australia, for others it’s all they know, but still, we won’t help them.

We did not want to help Kayaan Katyal, a six-year-old born with cerebral palsy years after his parents moved to Australia. We did not want to help Kayban Jamshaad, a child who acquired both a brain injury and haemophilia shortly after being born in a Bunbury hospital. We did not want to help the families of children with autism, even though their parents promised to cover all associated costs. And we did not want to help the family who had called Australia home for a decade because their daughter was diagnosed with cystic fibrosis.

When they issue these deportation notices, the government not only refuses to ignore the great contributions children with disabilities can make in this country, but they also dismiss the contributions of their families, who include doctors, teachers, and SES volunteers. For non-citizens, this means an accident or the decision to have children could end in deportation. Fortunately, public outrage has secured ministerial interventions for some but not all according to disability advocates – a hollow victory for those permitted to stay in a country that openly admitted it did not want them.

I don’t have to make the case that my community contributes to this country. The government acknowledged this by granting my Paralympic teammates Vanessa Low and Michal Burian with Australian citizenship, despite their disabilities. As Paralympic medallists, I only wonder if the government included their prize money as they include lung transplants or speech therapy in calculating the financial burden their disabilities might pose?

As another teammate of mine, Madison de Rozario, says: “People with disabilities shouldn’t have to be exceptional in order to be accepted”.

The 17-Year-Old Making Films Fun For Deaf Children

November 1, 2021

“Seeing my son be able to sit and understand the movie and see things he’s not seen before in eight years, it’s amazing.”

For eight-year-old Toby, who is deaf, watching films or TV on streaming platforms can sometimes be a bit pointless – because so many of them don’t have sign language versions.

“We have captions but they don’t really do anything for him because it goes quite fast. He would just watch and not get much from it,” his dad Jarod Mills tells Radio 1 Newsbeat.

But now, Toby has some help thanks to an app developed by a 17-year-old A-level student.

Mariella Satow, who has dual UK-US citizenship, lives in the UK but has been stuck in New York since summer 2020 because of Covid travel restrictions.

In that do-something-new phase of lockdown, Mariella created a signing app called SignUp.

She got the idea when she was teaching herself American Sign Language (ASL) – one of hundreds of sign languages used across the world.

Mariella wanted to watch TV shows to help her learn, so was disappointed to discover how few had signed versions.

According to research from The Big Hack by disability charity Scope, many streaming platforms offer closed captions and audio description, but not sign language.

It’s taken a year for Mariella to develop the technology, with lots of help from ASL teachers and the deaf community.

The app is available in the US as a Google Chrome extension – with an interpreter appearing in a box once the film starts playing.

It only works on Disney Plus films at the moment, because that’s where Mariella thought she could help the most children.

“Me and my sister were avid movie watchers when we were younger, and I couldn’t imagine that not being a part of our childhood,” she tells Newsbeat from New York.

‘Level playing field’

Jarod, who works in Kentucky at a school for deaf children, says it was “exciting” watching Toby use Mariella’s invention.

“The app creates a level playing field,” he says.

“Kids are getting that understanding and information like any hearing child does – they learn a language even before they go to school.”

Deaf people in the UK face many of the same barriers when it comes to cinema and TV.

“A hearing person can spontaneously go to the cinema. Whereas people who rely on subtitles have to make sure there’s a suitable viewing at a time we’re free,” says 27-year-old Stacey Worboys from Cardiff.

“I’d like to be able to go anytime without having to change my plans or book time off work.”

Stacey says she hasn’t previously come across any signing services “which will allow for an interpreter to be added to interpret the whole film”.

She has learned British Sign Language (BSL), and is comfortable using subtitles when watching TV shows and films.

But she feels having an interpreter would make things “more inclusive”, especially for someone who might struggle with subtitles.

Stacey and Toby aren’t the only people to be welcoming Mariella’s app. It’s now got thousands of users, and she’s working long days to juggle it with her A-level studies.

The time difference from New York to her school in Rugby, Warwickshire, means she sets her alarm for 5am.

She admits it’s “a bit tough” – but the silver lining is it gives her time to work on SignUp once lessons are over.

The positive reaction from teachers and parents has kept Mariella motivated to face the early starts.

“The most meaningful comments are when it’s the first time a child has had full access to a movie. The numbers don’t really matter, it’s the messages,” she says.

Stacey says a UK version of an app like SignUp would make film and TV “more accessible” for the deaf community, especially as sign language is often deaf people’s first language.

Mariella is up for the challenge – and hopes to make a British Sign Language version of her app for other streaming platforms such as Netflix and Amazon Prime.

“There are more than 300 sign languages used worldwide, so it’ll take a long time to get all of those versions out,” she says.

Disney hits such as Frozen, Moana and The Incredibles – Mariella’s favourite film – have all now been signed for SignUp, and Mariella’s had requests to do hundreds more films.

“I can’t believe how big it’s become,” she says.

“I had no idea what I was launching into the universe.”

Coventry Woman With Down’s To Fight High Court Abortion Ruling

November 1, 2021

A woman with Down’s syndrome says she will continue to fight to change the law that allows abortion up to birth for a foetus with the condition.

Heidi Crowter brought a case against the government in July saying the legislation did not respect her life, but she lost in the High Court last month.

Ms Crowter, 26, from Coventry, told BBC News she initially “lost the strength in herself” after the result.

But she said she planned to appeal.

Ms Crowter’s legal team had argued rules on abortion were unlawfully discriminatory.

Under legislation for England, Wales and Scotland, there is a 24-week time limit for abortion, unless “there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”, which includes Down’s syndrome.

The government maintained there was no evidence the law discriminated against Down’s and the case was dismissed, with judges finding the section of the Abortion Act pertaining to the condition to not be unlawful. They said it aimed to strike a balance between the rights of the unborn child and of women.

Ms Crowter said the outcome had made her feel “like people didn’t want me in the world”.

Ms Crowter, who explained previously she had not been campaigning against women’s right to choose, said: “I do feel discriminated against and the law doesn’t change how I feel.

“We’re going to ask the Court of Appeal to see if we can appeal and we’ll go from there – let’s do this.”

Liz Crowter, Heidi’s mother, said she was not surprised by the High Court decision but welcomed her daughter’s plans to challenge it.

“To hear that somebody thinks there’s no discrimination when the rule of the land is 24 weeks for one baby and full terms for a disabled baby – it’s clearly discrimination,” she said.

She added parenting was hard “whatever your children are like” and people’s feelings and the “great support that there is out there” needed to be taken into account when making law.

Ms Crowter’s husband, James Carter, said he would support his wife in her latest legal battle.

“I want Heidi’s voice to be heard and I’ll try my best [to] support [her] in this court case, to be the best husband.. who would love her and support her.”

Speaking in July when the case was brought, British Pregnancy Advisory Service told the BBC there was “a relatively small number of abortions every year” taking place after 24 weeks.

Guardian Letters On Step Free Access

October 29, 2021

From the most recent Guardian letters page.

Timothy Garton Ash writes that it “should be a pleasure to take the train” (Why we need a new golden age of European rail, 27 October). Given that more than two years have passed since parliament declared an environment and climate emergency, one might imagine that the Department for Transport would prioritise initiatives which would let everyone access a platform.

Hundreds of our stations still lack any step-free access, and the DfT’s current policy of allocating funds over five-year periods means that progress towards full accessibility of the railways remains pitifully slow.

The announcement that city regions will receive billions for sustainable transport cash is very welcome, but it would make even more sense if, at the same time, “Access for All” funding was reappraised in order to enhance these developments.Advertisementhttps://03d865e69b45f6e072ecd5678777c7fe.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

After all, families struggling with pushchairs, and people with mobility issues would just love to be able to get on to a station platform.
Paul Tattam
Chinley, Derbyshire

Timothy Garton Ash is quite right. My husband and I, now in our 80s, have not flown since 2006 and have had many wonderful rail holidays, travelling round Germany and Italy, staying in interesting cities for a few days at a time. The journey to Sicily using the overnight train from Rome, and the journey to Albania using the ferry from Bari to Durrësstand out as special. We have missed our regular fixes of train travel these last two years and can’t wait to resume our journeys.
Andrea Ives
Pateley Bridge, North Yorkshire

Reading Timothy Garton Ash’s article makes me think the government has got air passenger duty the wrong way round. If you need to go to Australia, it’s by air, but all domestic and many European destinations are easily reached by rail. It’s short-haul that should be penalised.
David Simpson
Datchet, Berkshire

Bobbie Goulding In Group Of Ex-Rugby League Internationals To Sue Over Brain Damage

October 28, 2021

Ten former rugby league players, including ex-Great Britain scrum-half Bobbie Goulding, are claiming the sport has left them with brain damage.

Lawyers say the players are all suffering from “neurological complications”.

And they are now planning a legal claim against the Rugby Football League for negligence.

It follows similar action by rugby union players including England’s World Cup winner Steve Thompson.

Goulding, who has recently been diagnosed with early-onset dementia, said there was not enough protection for players who had suffered head injuries.

The 49-year-old, who won the Super League and Challenge Cup double in 1996 as St Helens captain, said he had played again within days of being knocked unconscious at least three times in his career.

Former Wales international Michael Edwards, 48, and Scotland internationals Jason Roach, 50, and Ryan MacDonald, 43, are also part of a test group of 10 players, all under the age of 60, bringing the legal action. All three have also been diagnosed with early-onset dementia.

Their lawyer, Richard Boardman, said he was representing a total of 50 former professional rugby league players in their 20s to 50s, all of whom are showing symptoms associated with neurological complications.

He is also representing 175 former rugby union players, including Thompson, in a separate lawsuit.

Boardman said the legal claim was not just about financial compensation, but making the game safer and getting tested and diagnosed to undertake urgent clinical support.

He said there were potentially hundreds of former rugby league players who, as they reached their 40s and 50s, were developing various neurological issues, such as early-onset dementia, CTE (chronic traumatic encephalopathy), epilepsy, Parkinson’s disease and motor neurone disease.

“The vast majority of the former players we represent love the game and don’t want to see it harmed in any way,” Boardman said.

“They just want to make it safer so current and future generations don’t end up like them. We’re asking the RFL to make a number of immediate, relatively low-cost changes to save the sport, such as limiting contact in training and extending the return to play following a concussion.”

Given the significant risk of serious or permanent brain damage caused by concussions, the former players allege the RFL owed them – as individual professional players – a duty to take reasonable care for their safety.

Boardman added the group also felt the RFL should have established and implemented rules on the assessment, diagnosis and treatment of actual or suspected concussive injuries.

In a statement the RFL said: “The Rugby Football League has recently been contacted by solicitors representing a number of former players.

“The RFL takes player safety and welfare extremely seriously and has been saddened to hear about some of the former players’ difficulties.

“Rugby league is a contact sport and, while there is an element of risk to playing any sport, player welfare is always of paramount importance.

“As a result of scientific knowledge, the sport of rugby league continues to improve and develop its approach to concussion, head injury assessment, education, management and prevention across the whole game. We will continue to use medical evidence and research to reinforce and enhance our approach.”

‘I didn’t have one doctor check on me after knockout’

Goulding played for sides including Wigan, Leeds, Widnes and St Helens as well as earning 17 caps for Great Britain. He played for England five times, including the World Cup final in 1995, and the following year was named in the Super League team of the season.

Since retiring, first in 2005 and then nine years later after a brief comeback with Barrow Raiders, he has spoken about his battles with alcohol and drug addiction.

Talking about his dementia diagnosis, Goulding said: “For something like this to come out of the blue, and hit me like a bus, is hard to take.

“I didn’t think about dementia at all, I just thought it was the way life was.

“I played within days of serious knockouts on at least three occasions. I remember playing on a Sunday for Leigh at Huddersfield towards the end of my career [in 2002].

“I was in Huddersfield Royal Infirmary on the Sunday night after being seriously knocked out and played the following Saturday against Batley. I didn’t have one doctor check on me during that week.”

What is CTE & how can it be diagnosed?

Many of the former rugby league players who form part of the legal case have been diagnosed with early-onset dementia and probable CTE.

CTE is the disease discovered by Dr Bennet Omalu in American football player Mike Webster, and the subject of the film Concussion starring Will Smith. In 2011, a group of former American footballers started a class action against the NFL and won a settlement worth about $1bn (£700m).

CTE can develop when the brain is subjected to numerous small blows or rapid movements – sometimes known as sub-concussions – and is associated with symptoms such as memory loss, depression and progressive dementia.

The disease can only be diagnosed in a brain after death.

It has been found in the brains of dozens of former NFL players, as well as a handful of deceased footballers, including former West Bromwich Albion and England striker Jeff Astle. A re-examination of his brain in 2014 found he had died from CTE.

The issue of concussion in sport has been debated extensively over the past few years and the links between heading a football and degenerative brain disease have even forced rule changes at youth level.

In England, Scotland and Northern Ireland, children aged 11 and under are no longer allowed to head a ball in training, while there are also limits to heading frequency at higher age group levels.

At senior level, former professionals have called for more research and better player welfare after the death of England World Cup winner Nobby Stiles a year ago, and news that his 1966 team-mate and Manchester United legend Sir Bobby Charlton is also suffering from the disease.

More information about dementia and details of organisations that can help can be found here.

Why Women May Wait Decades For An ADHD Diagnosis

October 28, 2021

Gender bias is leaving many women with attention deficit hyperactivity disorder undiagnosed, leading psychologists are warning.

The prevailing stereotype ADHD affects only “naughty boys” means at least tens of thousands in the UK, it is estimated, are unaware they have the condition and not receiving the help they need.

“I used to tell doctors and therapists all the time, ‘You’ve got to make this constant noise in my head stop. I can’t think. I can’t sleep. I can’t get any peace,’ but this was always dismissed as anxiety or women’s problems,” Hester says.

Diagnosed with depression at 16, she spent much of her 20s unsuccessfully battling to be referred to a psychiatrist.

And she constantly felt she was not reaching her true potential.

Make mistakes

“I studied history at university and could write an essay on an academic subject – but when I worked as a sales assistant, I couldn’t fill out an order form,” Hester says.

“My mind would wander off and I would make mistakes.

“I would get a lot of criticism for that.

“I was always thinking, ‘Why am I not able to manage things that other people can do so easily – like keep their house tidy or remember deadlines?'”

Nervous breakdown

The anti-depressants and anti-anxiety pills Hester was encouraged to take were not helping but she learned to hide her struggle.

“You suppress who you are, so you can look like a normal person – but it’s exhausting,” she says.

“Then, I had a baby – suddenly, that extra pressure, the sleep deprivation, all the wheels fell off.

“When he was three-years-old, I had a nervous breakdown.”

Doctor’s radar

Hester was finally diagnosed with ADHD in 2015, aged 34, and only, she says, because her husband had discovered he had the condition, a year earlier.

His diagnosis took 12 months.

“At no point did anyone say to Chris, ‘This sounds like anxiety,’ or ‘Have some tablets,'” Hester says.

“He was taken seriously.

“Whereas with me, I was on the doctor’s radar from the age of 16.

“Bluntly, it took so long for me to be diagnosed because I’m a woman.”

Disruptive behaviours

A late diagnosis can have a negative impact on relationships and careers, as well as increase the risk of mental-health problems such as anxiety, depression and eating disorders.

Clinical and forensic psychologist Dr Susan Young says childhood is where the bias starts – with boys three to four times more likely to be diagnosed.

Research suggests boys tend to display more disruptive behaviours, such as rule-breaking or fighting, while girls’ symptoms are likely to be more subtle.

“It’s the boisterous boys who are causing problems in the classroom who are going to be referred for help, not the quieter girls who are criticised for daydreaming or not paying attention – but those girls are also struggling,” Dr Young says.

“Women haven’t just woken up with ADHD – there have been signposts all the way along their life.”https://emp.bbc.co.uk/emp/SMPj/2.44.0/iframe.htmlMedia caption, Twiggy: “My ADHD is part of who I am”

Twiggy, 27, says the signs she had ADHD were clear at school.

“I loved English and drama,” she says.

“If we were learning about Shakespeare, oh my gosh, I was on fire.

“But if it was anything else, like maths, I just wasn’t interested.

“If I was a boy, I think my behaviour would have been looked into – but I was just labelled a disruption.”

Cried tears

Twiggy’s struggles with focus often left her feeling “stupid”.

But, with the support of her family and friends, she went on to study law at university and become a beauty journalist for a prominent magazine.

Twiggy first heard about ADHD in women on social media but then had to persuade her GP to refer her to a psychiatrist.

When her diagnosis was confirmed, last August, she cried tears of happiness.

“It was a huge relief knowing I’m not hyperactive because I’m annoying, I don’t daydream because I don’t care about what the person is saying, it is just the way my brain works,” she says.

Blame myself

ADHD is a neurodevelopmental condition that comes in three types: inattentive, hyperactive/impulsive, or a combination of both, which is what Twiggy has.

All the women say their ADHD diagnosis has improved their lives.

For some, medication and therapy has helped.

For others, including Twiggy, all they needed were answers.

“My ADHD is part of who I am – but now, I’m able to manage it, I don’t blame myself anymore,” she says.

Underlying difficulties

Experts say females often learn to “camouflage” their symptoms.

They may be viewed as having anxiety or depression.

They may have another condition alongside their ADHD, such as autism.

And this can lead to an incomplete or incorrect diagnosis that masks their underlying difficulties.

Car crashes

Leading experts say the diagnosis gap between males and females shrinks in adulthood.

But while NHS Digital data suggests diagnoses have been on the rise for both genders in recent years in England, in 2019-20, 33,000 women were diagnosed compared with more than 100,000 men.

As a teenager, Sheelagh battled suicidal thoughts.

As an adult, she exhibited risky behaviour – including being involved in six car crashes.

And her life was “chaos”, the 66-year-old says, until her ADHD was confirmed, three years ago.

“I do think about what it would have been like if I had been told earlier,” she says.

“My kids have turned out amazingly well – but I’m sad they’ve done it in spite of me not because of me.

“I could have had a career – I trained as a dispensing optician but I never managed to hold down a job long enough to progress.

“I would just walk out because I would get frustrated with people not understanding me.

“I’m quite fond of who I am now.

“Before, I was like a volcano, ready to go off.

“Now I’m like a mountain – gentler, quieter, smoother.”

Mental-health services

A Department of Health and Social Care official for England says guidance has been updated.to make it easier for doctors to diagnose ADHD in women and girls.

There are currently no dedicated services for adults with ADHD in Northern Ireland, according to a departmental official. Patients’ needs are met via “generic mental-health services”.

The Scottish government says it is carrying out a pilot project to improve the diagnoses of adults with neurodevelopmental disorders.

A review by the Welsh government of all-age neurodevelopmental services is due to be completed by March.

For more information, psychologists advise completing online ADHD questionnaires and speaking to a GP.

Spend a day in Shakespeare’s Theatre as stars of stage and study come together to launch online learning platform

October 27, 2021

A press release:

 


A Bit Lit

#ABitLit #ShakespeareDayOut | @a_bit_lit| https://abitlit.co/ | Images and Video | Link to Trailer

A brand-new digital learning platform is set to launch with the aim of making the latest academic research available to anyone, anywhere, in a fun and interactive format. A Bit Lit’s debut event will take place on Saturday 15 January and will be the first in a series of events and courses drawing on historical and cultural research and performance expertise.

Theatre lovers and history buffs are invited to experience A Day Out in Shakespeare’s Theatre, an opportunity to imagine a trip to the theatre in the 1600s, diving into the decisions and dilemmas they might have faced while taking in the sights, sounds and even smells of the day in a two-hour experience that will test the limits of Zoom. There will be fireworks, there will be bears – who knows, the theatre may even burn down – they often did.

A Day Out in Shakespeare’s Theatre draws together talents from the worlds of theatre and academia including Sir Simon Russell Beale and This is Shakespeare author Professor Emma Smith, who will introduce the event. Audience members will have a chance to create their own Shakespearean-era production with performers fromimprov troupe The Pantaloons, taking learning about Shakespeare’s theatre to a new, more immersive level.

To help build the atmosphere and provide clues as the audience creates the show, early modern theatre specialists Dolphin’s Back will perform a scene from the era, theatre and performance artist Emma Frankland and Scottish-Thai actor, theatre-maker, writer and drag queen Bea Webster will deliver traffic and weather reports for the day. The audience will then be joined by some of the most cutting-edge academics who will reveal surprising and unknown research about the period, including the Museum of London Archaeology’s Heather Knight on forgotten performance venues and Before Shakespeare’s Callan Davies on the women who ran Shakespearean theatre and Holly Dugan on the smells of early modern London. 

Aimed at those aged 14 and up, audiences will be able to enjoy the experience alone, or as a party, perhaps dressing up to meet friends online. Those who’d like to learn more after taking part are invited to join a follow-on course, called How to Make an Elizabethan Theatre to take place online in the weeks following the event, exploring the same ideas in greater depth. As part of A Bit Lit’s commitment to bringing performance and research to communities often underserved by theatre and universities, all events will be translated into British Sign Language, live captioned and audio described. A programme of further interactive events and follow-on courses will soon be announced soon, including topics such as Black Romance Fiction, The History of Dragons and Queer Urban Histories.

A Bit Lit was born on the first day of the UK lockdown, the brainchild of theatre historian Andy Kesson. During the past year and a half, A Bit Lit has posted almost 150 open-access, free videos celebrating research and creative work from Ghostbusters to coconuts, professional wrestling to reading in outer space. Andy is now joined by the Royal Shakespeare Company associate artist and performer Jimmy Tucker to make A Bit Lit a digital platform bringing research and creativity to new audiences.

Speaking about A Day Out in Shakespeare’s Theatre, Professor Emma Smith, Professor of Shakespeare Studies, University of Oxford, said ‘I’m excited to be part of the launch for A Bit Lit. I look forward to seeing how it’ll shake up what we expect from the online learning space and mash up the insights of research and scholarship with the energies of live theatre and improv.”

Emma Frankland said “Andy brings so much fresh energy and insight to theatre history, which in turn, informs theatre present!”

Bea Wilson said ” I’m really excited to be joining A Bit Lit’s new platform, bringing a sense of play, fun and experiment to the world of learning and performance. I’m especially excited by the way they’ve foregrounded d/Deaf and disabled academics and performers in their patrons, performers and audience.”

Sir Simon Russell Beale said “I’ve known the team behind A Bit Lit for a few years now having worked with Jimmy at the RSC. I know they’re as passionate as I am about opening up the plays of Shakespeare’s era to people everywhere so I’m delighted to be able to be a part of their first event.”

A Bit Lit Founders Andy Kesson and Jimmy Tucker said “We are really excited to launch this new venture, creating a new space for learning together and connecting wide audience to the latest ideas and creative work. ‘A Day Out at Shakespeare’s Theatre’ will launch our new platform perfectly with its blend of archaeological, archival and performance-based discoveries and a real sense of anarchic fun. The theatres of Shakespeare’s time were brand-new experiments in public entertainment and the communication of innovative ideas, and we hope to create something similar online.” 

Andy Kesson is a theatre historian and award-winning teacher, with over twenty years’ experience working across the theatre and university sectors. He is the author of John Lyly and Early Modern Authorship, has edited essay collections on print popularity and the early English theatre, and is a regular advisor and collaborator in the theatre, from mainstream companies such as the Royal Shakespeare Company and Shakespeare’s Globe to newer, fringe and experimental companies such as Dolphin’s Back and The Pantaloons. His research and performance work have generated over one and a quarter million pounds of funding and includes the Before Shakespeare and Box Office Bears research projects and the first large-scale professional production of John Lyly’s queer and trans-positive play, Galatea, directed by Emma Frankland.

Jimmy Tucker has over 30 years’ experience working in the theatre, including collaborations with Michael Grandage, Edward Hall and Roxana Silbert. He is an Associate Artist at the Royal Shakespeare Company, performing in Stratford-upon-Avon, London and New York, including Michael Boyd’s Histories which won three Olivier awards. He is a founder member of the Propeller Theatre Company, and has taught Shakespeare in performance at London’s Globe Theatre.

Listings information

A Day Out in Shakespeare’s Theatre

Saturday 15 January
4-6pm GMT
Tickets £15: https://www.eventbrite.com/e/a-day-out-at-shakespeares-theatre-tickets-194451829657

How to Make an Elizabethan Theatre Course
Monday 14 February -18 March (Four video lectures posted at the start of each week, available to watch in your own time)
Tickets £35

In this course, we consider the theatre of Shakespeare’s time from four unique perspectives: the people making the theatre, the people writing plays for it, the people acting and watching it and the characters brought to life onstage.

The course will be delivered by a series of 4 video lectures, and participants will be offered an additional Q&A online session each week. A reading list will also be made available.

For more information visit https://abitlit.co/events/how-to-make-an-elizabethan-theatre/ 

Dandy- The Cycle

October 27, 2021

Dandy, a 28-year-old alternative pop musician from Shropshire, has every reason to be angry. An abusive relationship in her early 20s left her powerless, she says, while the deaths of thousands of fellow disabled people under the benefits system have filled her with pain and rage.

In Their Shoes, the lead single from her self-recorded, self-produced debut album, The Cycle, excoriates this “broken system that’s rigged to lose” with portraits of characters such as Mary: “When she’s at the assessment / She holds her pride / As they ask why she hasn’t / Pursued suicide.”

Despite her incisive lyrics, writing this unsparingly didn’t come naturally, Dandy says over a Zoom call. “Anger is an emotion that I had to learn how to feel, and I had to learn how to channel artistically or productively. I think that’s a huge problem for a lot of people, and I think particularly disabled people.”

Discovering her voice has earned her a staunch following. She has 15,000 followers on Instagram, where she shares her own candid and comedic illustrations on comments that she’s tired of seeing and hearing as a queer, disabled young person. Her attitude is the same in person, as she laughs at her own frankness.https://www.youtube-nocookie.com/embed/He-rgGhnpqQ?wmode=opaque&feature=oembedDandy: In Their Shoes – video

“We feel we don’t have a right to be as angry as we should be, that we need to sit back and be the good disabled people who are really thankful for the handouts,” she adds. “I feel so much frustration about that, because all of the disabled people I know are fantastic, incredible people. We need them: they add so much vibrancy to the world, and we’re so often reduced to being a so-called ‘burden’.”

Dandy’s haunting piano melodies, inspired by her “lifelong hero” Kate Bush, recently caught the attention of BBC Introducing. She’s hoping her music travels further – energised by the striking fact that there are no popular musicians signed to a major label who use a wheelchair.

Even among working disabled musicians, a survey by arts access charity Attitude Is Everything (AIE) found that two-thirds had compromised their health or wellbeing to perform live; 70% said they had withheld information about their health condition due to stigma and concerns over working relationships. Those who have disclosed access requirements said they were often ignored or not taken seriously.

“Artists and musicians with chronic illnesses are frequently met with attitudinal barriers, which stem from a lack of understanding about what it is actually like to manage a health condition day in, day out,” says AIE artist development manager Rich Legate. “They do not see the planning, the rest, the wellbeing tactics.”

Diagnosed in 2018 with myalgic encephalomyelitis (ME), life suddenly slowed down for Dandy. It led to the once-reserved artist developing a renewed sense of determination. “I would honestly say that I probably would have gone through the rest of my life really struggling with my confidence if I hadn’t become disabled,” she admits. “I had to become confident in a wheelchair, with people staring at me and interrogating me when I’m trying to buy bog roll.”

After spending 18 months in bed, she says, she stopped caring about what other people thought. “When everything is stripped away, you go, ‘OK, what is fundamentally important to me?’ And that was art and music.”https://open.spotify.com/embed/album/72uiYKWsqVpfiPG4SZM9XK

Diving into songwriting after her diagnosis, Dandy took inspiration from Bush, Tori Amos and Pink Floyd’s The Wall. “It’s so politicised,” she says of the latter. “There’s so much reflection on society and the ills in our society, and it’s done in such a clever way that people can sort of interpret it in all sorts of different ways.”

Creating The Cycle presented its own set of challenges. “Rather than focusing on one song at a time, I did a lot of flitting between,” says Dandy. “Another thing my ME has caused is I’ve lost my rhythm, and I didn’t believe that that was a thing that you could lose. I thought that was an innate thing that either you had or you didn’t, but mine is just terrible.” She meticulously tapped out drum patterns on GarageBand, as part of a creative process that she shared on her Instagram.

Dandy says she tried gaining attention for her music by emailing industry professionals, only to be met with what she describes as a “wall of nothingness”. It ended up being beneficial, she says, leading her to create work that is wholly authentic to her voice. I ask her what’s stopped past musicians from finding mainstream success. “Firstly, it’s accessibility,” she says.

A 2019 AIE survey found that concert venues were frequently failing to provide adequate access and facilities. After the lifting of Covid-19 restrictions allowed live music and theatre to return, disabled and chronically ill musicians have said they remain shut out of gigs and festivals. “We can’t get into studios, we can’t get into venues, we can’t get into all of these places that we need to to produce our music,” she adds.

Secondly, she continues, “I think labels perceive it as a risk – and again, there’s no other examples of it.” Yet with her “angry album”, Dandy isn’t standing down. “I realised how incredibly useful [anger] is, and how many people need to hear that. I hope people listen to [the album], and realise that those are emotions they’re allowed to have when terrible things happen to them.”

Dandy’s debut album The Cycle is out now.

Claimant Died Underweight, ‘Unkempt And Dirty’ After ESA And PIP Wrongly Stopped

October 26, 2021

With many thanks to Benefits And Work.

A disabled claimant died underweight, ‘unkempt and dirty’ after the DWP wrongly stopped both his ESA and PIP. The DWP left the destitute claimant to be supported by their elderly, disabled parent who themselves needed daily carers and meals delivered. £14,000 in backdated PIP was eventually paid to the claimant’s next-of-kin, the Independent Case Examiner (ICE) has reported.

According to ICE, the claimant had severe depression and physical health problems and was classed as vulnerable by the DWP.

For a long time, their elderly parent was their appointee for benefits purposes. But the parent became too ill to continue and informed the DWP.

At this point the DWP should have found another appointee for the claimant themselves, as their guidance requires, but they did not do so.

Over the following months the claimant’s ESA and PIP were repeatedly stopped due to failure to attend assessments and then restarted following interventions. However, the DWP seem to have lost the evidence showing why the claims had been restarted

Sometimes letters were sent to the claimant’s address and sometimes to his former appointee’s, making it even harder for the claimant to meet their obligations.

The DWP repeatedly failed to follow their own safeguarding procedures throughout this period, even though they knew the claimant was vulnerable.

At one point the claimant’s sibling even contacted the DWP to say that the claimant’s GP had sent them for psychiatric assessment due to a deterioration in their mental health.

The sibling explained that they had been to the claimant’s house and found unopened post and said they weren’t fit for a PIP assessment.

Nonetheless, another PIP assessment was arranged by letter, the claimant didn’t answer the door and their PIP was stopped.

The same thing had also happened in relation to their ESA claim.

At the time of their death the claimant had been without ESA for 3 months and PIP for three weeks.

The claimant’s sibling told ICE that when they had last seen the claimant they had lost weight and were unkempt and dirty. Their elderly parent had been giving the claimant money for food, providing support even though they themselves had a care package, meals prepared and carers attending daily.

Following a complaint by the claimant’s sibling, the DWP made a payment of ESA arrears and £3,000 of backdated PIP.

The sibling then took the case to ICE, resulting in a further payment of £10,700 in PIP to the claimant’s estate and a consolatory payment of £2,500 to the family.

The ICE report doesn’t give the claimant’s cause of death.

But there can be no doubt that the continual stopping and starting of their benefits will have exacerbated the claimant’s mental health issues as well as causing considerable distress to their family.

It’s worth noting that even when ICE drew the DWP’s attention to their own guidance, which said they were responsible for ensuring the claimant had an appointee, the DWP continued to dispute this.

Had the DWP provided an appointee and not ignored their own safeguarding procedures on multiple occasions, it is entirely possible that this story would have had a very different ending.

As it is, we can only hope that the Court of Appeal in the Jodey Whiting case will take note that ICE is once again identifying failures by the DWP to follow its own safeguarding procedures. How many more times does this need to happen before it is accepted that it is an entire system that is failing and not just isolated incidents?

You can read the full account in the ICE annual report (See: case study 3)

Long Covid: What Are You Entitled To If You Can’t Work In The UK?

October 25, 2021

Since falling ill with Covid-19 in March 2020, Sara Hawthorn, 38, has been experiencing extreme fatigue and other problems, such as trouble concentrating and brain fog.

“I can’t work or focus,” says Hawthorn, who lives in Leeds and runs her own PR agency. “I’m constantly forgetting. I can’t trust my brain.”

Hawthorn at first tried to conserve her energy by reducing her working hours, then in August this year she closed her business. “I didn’t trust myself to do the best work that I could. My occupational therapist said: ‘We always tell people to stop everything but you have not literally stopped; you have worked throughout the pandemic.’ There’s been no recuperation time. I need to listen my body.”Advertisementhttps://d5d191e7435a91d1e495bc543fcac90a.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Hawthorn, who was referred to a long Covid clinic in August after nine months on the waiting list, adds: “I was active, ran a business, danced a lot, walked, baked; all that is gone. Life is dull, small and boring. It’s hard to compare yourself with who you were before. The work guilt was horrific but continuing was at the cost of my health.”

In May the Office for National Statistics estimated that 1 million people in the UK were experiencing self-reported long Covid – a term used to describe symptoms that persist four weeks after having the virus. The NHS recognises symptoms as including extreme tiredness, problems with memory and concentration (“brain fog”), difficulty sleeping and shortness of breath.

Experiencing fatigue after contracting Covid-19 in December 2020, David Reynolds*, 33, could only work 50% of the time when he returned the following month. Reynolds, the head of resource recovery at a product design company, worked several hours a day over five days but he struggled. “It exhausted me,” he says. “And I didn’t recover. Work were really sympathetic and accommodating and said the ball was in my court. I kept going as we were busy but I kept experiencing cycles of feeling wiped out.”

He continued for five months until he told his employer that he was finding it difficult to recover. In May he volunteered to reduce his hours to three days a week, resulting in the loss of two-fifths of his pay. He says he has been able to cope because of the savings he had amassed during the pandemic. “I managed to save up quite a bit of money during lockdown, which I would never usually be able to do. But now I’m eating into them. Thankfully, I’m on a reasonable salary, so I can get by without changing my lifestyle, but it’s not sustainable long term. I plan to go back to four days as soon as I can.”

His company arranged an occupational health assessment, where it was agreed that reducing his hours by a specific time and taking rest periods would hopefully aid his recovery. When he told his employer that he was finding it difficult to live on three days’ salary, it offered to pay statutory sick pay pro rata, which he says comes to about £40-£50 a week.

If an employee needs to reduce hours or workload, sometimes adjustments will be suggested by a GP when they issue a statement of fitness for work – a note needed if you are off work for more than seven days.

“If a GP suggests certain workplace adjustments within a fit note then an employer is obliged to consider whether it is possible and reasonable to implement them,” says Charlotte Geesin, the head of employment law at Howarths. “While an employer is obliged to consider any suggested adjustments, they are not obliged to implement them if they cannot reasonably be accommodated, for example, on the basis of cost.”

If an employer is unable to accommodate the suggested adjustments then the employee is entitled to remain off sick from work until they feel well enough to go back, she says.

An employee who is absent under a fit note and who meets the eligibility criteria will be entitled to statutory sick pay, which is £96.35 a week, for up to 28 weeks. “When SSP ends or, if an employee is not able to obtain a fit note to validate the absence, then any unpaid absence would be something that the employee would have to discuss with their employer,” Geesin says.

She adds that if an employer has a company sick pay scheme in place, an employee might also be entitled to additional pay during any absence. “If an employee does not have a contractual right to company sick pay or if the entitlement to extra company pay is described as discretionary, then the employee would have no automatic right to pay. Any payment would need to be agreed between an employer and an employee.”

Geesin says that it is possible for a person with long Covid to be classed as disabled and to qualify for any workplace help related to that. It is worth checking the conciliation service Acas’s website for guidance on the growing impact of long Covid in the workplace.

A Department for Work and Pensions spokesperson says: “For anyone with a disability or long-term health condition, including long Covid, there is a strong financial safety net, including statutory sick pay and universal credit. Personal independence payment (Pip) is also available for those who have a daily living and/or mobility needs for three months, and are expected to have these for at least another nine months.”

Wendy Alcock, the communications manager at Entitledto, an online benefit calculator, says that those over pension age might be allowed to claim pension credit, while all age groups and work types may be eligible for help in paying council tax.

“Contributory benefits (new style employment and support allowance and new style jobseeker’s allowance) are available to help people who have paid enough national insurance contributions over a certain period of time,” she says.

They are not means-tested so there are no income and savings rules that need to be met.

If an employee needs to reduce hours or workload, sometimes adjustments will be suggested by a GP when they issue a statement of fitness for work. Photograph: Fiona Jackson-Downes/Getty Images/Cultura RF

“Some of these benefits, including universal credit, require you to agree to a claimant commitment to continue to receive your payments,” she says. “If you don’t meet the rules you will be sanctioned and your payment will stop. Your work coach should take into consideration your long Covid when agreeing your commitments and they have the discretion to change things, so ask if you’re struggling to meet them.” The benefits calculator at entitledto.co.uk will help you work out what you may be able to claim based on your own circumstances.

Those with long-term health conditions as a result of long Covid can also apply for Pip if they have had daily living or mobility needs for three months and are expected to have needs for at least a further nine months.

Another option could be claiming on your insurance if you have it. “If you can’t work you can claim through your income protection cover,” says Kevin Carr, an insurance consultant. “Insurers will want evidence and will write to your GP. With hundreds of thousands of people having long Covid, the industry is bracing itself for a large number of claims.”

Hawthorn has not looked into whether she could claim benefits, but she fears for the future financially says she is likely to struggle. “I haven’t been able to plan for this,” she says.

“It’s been blow after blow … I had reserves in the bank but I had to use them because of the economic situation.”

* Name has been changed

Peers Urged To Reject Bill To Legalise Assisted Dying

October 22, 2021

Medical professionals and religious leaders have warned peers against backing a fresh attempt to relax the law on assisted dying.

A new bill to enable terminally ill adults to legally seek assistance to end their lives will be debated by the House of Lords on Friday.

Campaigners say a change in the law would give them greater control over how and when they die.

But opponents argue a change in the law would threaten vulnerable people.

The bill, proposed by independent peer Baroness Meacher, would amend legislation in England and Wales from 1961 that bans assisted dying.

Currently, those who judged to have assisted the suicide or attempted suicide of another person can be jailed for up to 14 years.

The proposed new law would enable adults who are of sound mind and have six months or less to live to be provided with life-ending medication.

The person wanting to end their life would have to sign a declaration approved by two doctors, which is signed off by the High Court.

Baroness Meacher has said her bill would help a “small but significant number of dying people avoid unwanted suffering at the end of life”.

However, a group of 1,689 current and retired doctors, pharmacists and medical students has urged peers to reject it.

In an open letter to Health Secretary Sajid Javid, they said a change in the law would “threaten society’s ability to safeguard vulnerable patients from abuse,” and “undermine the trust the public places in physicians”.

“It would send a clear message to our frail, elderly and disabled patients about the value that society places on them as people,” they added.

The proposed law change has also attracted criticism from Archbishop of Canterbury Justin Welby, Roman Catholic Cardinal Vincent Nichols, and Chief Rabbi Ephraim Mirvis.

In a letter of their own addressed to peers, the religious figures registered their “profound disquiet” at the bill, arguing its proposed safeguards contained “practical inadequacies”.

They wrote: “We acknowledge that Baroness Meacher is seeking the alleviation of suffering.

“This motivation we share wholeheartedly, but we disagree on the means advanced to address this very real concern.

“The aim of a compassionate society should be assisted living rather than an acceptance of assisted suicide,” they added.

Previous failed bills

Baroness Meacher’s proposed law is the latest in a series of bills suggested by parliamentarians to try and change the law on assisted dying in recent years.

The peer revealed that the death of a family member had left “an indelible mark”, as she reflected on how a relative with liver cancer took their life more than 40 years ago.

She said: “I just thought, how lonely is that? How awful. And she can’t have been certain that it would work. In fact, it did work. That left an indelible mark on me.”

The proposal follows similar bills by Labour peer Lord Falconer and former Labour MP Rob Marris, both of which failed to become law.

As a private member’s bill starting in the Lords, Baroness Meacher’s bill is also unlikely to succeed because it has no priority to be debated in the Commons.

The Ministry of Justice says a change in the law “in an area of such sensitivity” should be a matter for MPs, not the government, to take a view on.

A similar bill aiming to legalise assisted dying in Scotland has also been tabled by the Liberal Democrat MSP Liam McArthur.

Disabled Man Hopes To Challenge Benefit ‘Hospital Rule’

October 21, 2021

A disabled man who had his welfare benefits paused when he spent more than 28 days in hospital, is hoping to challenge the rule in court.

Cameron Mitchell, 20, from Carlisle, cannot walk or speak, and has seizures. He spent 128 days at the Royal Victoria Infirmary.

Current rules mean he lost his payments while still needing carers, and he has applied for a judicial review.

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

‘Needs don’t change’

Mr Mitchell receives Personal Independence Payment (PIP) and his mother and carer – Nicola Clulow – receives a Carer’s Allowance.

Under current regulations, known as the “hospitalisation rule”, a person’s entitlement to their benefits is suspended if they have received care in hospital for more than 28 days.

Legal firm, Leigh Day, has applied for a judicial review – where a judge considers the lawfulness of a decision or action by a public body – to challenge the current regulations.

Ms Clulow – who is communicating on her son’s behalf in this case – said the payments were stopped even though the hospital relied on her for her son’s care.

She said staff asked her to spot when Mr Mitchell was about to have a seizure, to interpret his pain and to be available at all hours to assist with his care when asked.

The family said they lost more than £5,000 in benefit payments while spending about £100 a week on food and transport.

Mr Mitchell argues the DWP’s failure to provide an exception to the rule for disabled people, whose needs do not change, discriminates against them and breaches their human rights.

Ms Clulow said: “Cameron requires the constant care and knowledge of his needs from a known carer whenever he is in hospital.

“This doesn’t change on day 29, but the financial means to enable us to provide this support does.”

Channel 4 Subtitles And Other Services Not Likely To Return Until Mid-November

October 20, 2021

Channel 4 subtitles, signing and audio description are not likely to return on TV until mid-November, almost two months after a catastrophic fault.

The outage, which has already lasted more than three weeks, has angered deaf, hard of hearing and visually impaired viewers.

More than 500 people have complained to broadcasting regulator Ofcom.

The fault happened on 25 September when a fire suppressant system destroyed hard discs at a broadcast centre.

An emergency back-up subtitling system also failed. The channel is building a new system from scratch, and said it will fix the problem more quickly than its current prediction of mid-November if it can.

The incident at the broadcast centre owned by Red Bee Media also affected other broadcasters like the BBC and Channel 5, although their services have now been restored.

‘Complex process’

“Channel 4 would like to apologise to viewers for not currently being able to provide access services,” a statement said. “We realise how frustrating this is for our viewers.”

The broadcaster will begin to offer subtitles for its biggest shows like The Great British Bake Off and Gogglebox on its online catch-up service All4 from this week.

However, the channel cannot provide audio description or sign language services at all. “These services were irretrievably lost during the incident and we won’t be able to restore them until we move to the new system we are building,” it said in an update published on Tuesday.

It added: “We cannot rush this and run the risk of something going wrong. Something like this needs to be installed slowly to ensure our channels don’t come off air and to prevent something like this happening again.

“That means that full access services might not be available until the middle of November. Clearly, if we can do anything to speed up this process, we will.”

Mark Atkinson, chief executive at hearing loss charity RNID, said: “For more than three weeks, the 12 million people in the UK who are deaf or have hearing loss have felt excluded and increasingly angry, because the system to provide subtitles and signed content is broken.

“It’s impossible to imagine a failure that affected the hearing community being allowed to go on for so long.

‘Unacceptable’

“The BBC and Channel 5 are now offering a near-normal service, but it is unacceptable that the system could have failed so spectacularly, and that Channel 4 have still not fixed the problem. Further, there was a failure across the board to communicate to deaf people regularly and – most importantly – accessibly.

“We’re pleased that Channel 4 have started providing updates in British Sign Language to the deaf community. They must ensure deaf people and people with hearing loss are kept informed about what steps they are taking until the problem is fixed.”

An Ofcom spokesperson said: “We remain extremely concerned by the impact on people who rely on these services. Channel 4 did not have strong backup measures in place, and it should not have taken several weeks to provide a clear, public plan and timeline for fixing the problems.

“We now expect Channel 4 to meet the timings it has set for restoring these vital services.”

Adam Hills on Channel 4's The Last Leg holding up a sign reading "Sorry there's still no subtitles"
Image caption, The Last Leg host Adam Hills addressed the ongoing problems on 8 October

A spokesman for Red Bee Media said: “Things are improving every day and we are able to deliver more and more accessible programmes, but we are unfortunately still experiencing issues with receiving the media for which our access teams create pre-recorded subtitles, audio descriptions and signing.

“As soon as there are any more updates, we will share these.”

The original fault temporarily took Channel 4, Channel 5 and S4C off air completely, and led to transmission problems in the subsequent days, such as E4 being forced to delay the Married At First Sight series finale.

On 8 October, presenter Adam Hills addressed the problems on Channel 4’s The Last Leg, holding up a hand-written sign reading “Sorry there’s still no subtitles”, followed by another saying “Sort it out”.

The Times reported that the fire suppression system at Red Bee’s headquarters sucked all the oxygen out of a room, causing a “sonic wave” that shut down the transmission servers.

A spokesperson for the London Fire Brigade said: “Firefighters were called to reports a gas suppression system had activated at a building on Wood Lane in White City on Saturday 25th September.

“The suppression system had activated in a server room and on site engineers worked to ventilate the room. Firefighters carried out a search of the building and a sweep of the room but found no fire apparent.”

DWP Accused Of Copying ‘Kidnappers’ To Verify UC Claims

October 19, 2021

With many thanks to Benefits And Work.

 

The DWP stand accused of having taken a lesson from ‘kidnappers’ in order to verify universal credit claimants’ addresses, by requiring them to take multiple photos of themselves, including one with them holding a copy of the current day’s local paper.

The Public Interest Law Centre have tweeted an extract from a claimant’s UC online account and suggested that ‘Point 5 is what kidnappers do, which seems appropriate’ .

The extract itself is a list of 5 demands the claimant must meet in order to have their UC claim considered:

Further to today’s phone call. I now require you to provide the following information. If you don’t provide all of the information that we’ve requested your claim will be closed.

1. A photo of your ID card or passport open on the photo page.

2. . A photo of your ID card or passport open on the photo page held next to your face.

3. A photo of you stood outside the front door (open behind you) of the property you live at. Ask someone to take this from the street so that the whole property can be seen.

4. A photo of you stood next to your street sign with you [sic] right hand holding it. Ask someone to take this photo from a few metres away so that the background can be clearly seen.

5. A photo of you holding your local newspaper for the area you live (not a national tabloid newspaper). This should be dated the same day you upload the photo.

As other posters point out there are numerous problems with this approach including: many areas don’t have a local paper anymore, you can’t put your hand on a street sign if it’s halfway up a building, you can’t take a photo of yourself in the front door of your property from the street if you live halfway up a block of flats, you may not know anyone who could take a photo of you and may be unwilling to hand your phone over to strangers.

The bizarre series of instruction appears to be a way of trying to verify a claimant’s identity and address without having them attend an interview.

But many would argue that copies of items such as utility bills and tenancy agreements are as reliable as a series of images that could quite possibly be photoshopped.

Theatre Became More Accessible During Covid. Will It Last?

October 19, 2021

Going to the theatre in a pre-pandemic world, my first question was always whether I could use the toilets. With so many of the UK’s theatres dating back decades, or centuries, even the disabled toilets are often tucked into tiny, pokey spaces that could be fine for a small manual wheelchair, but not my assistant and bulky powerchair. Even disabled loos can be inaccessible for disabled people.

Like going anywhere with a wheelchair, a trip to the theatre requires ridiculous planning. Just booking a seat is often a challenge. Most theatres still don’t allow you to buy wheelchair tickets online, and good luck trying to find out if an assistant goes free. But what has stopped me – and many other disabled or chronically ill people – from regularly going to the theatre is simply a lack of energy. By the end of a working day, I was often too exhausted and sore to spend more hours in my chair.

“Journeys out are too tiring, require planning, and often have to be cancelled,” John Maidment, an avid theatre fan who is disabled, told me. “Most theatre seating is too uncomfortable, and I can’t move about, shift position or exercise a limb as it annoys and distracts others.”

All of which made the pandemic-induced shift to online performances a welcome change: suddenly, theatre was newly accessible, and not just for those with mobility impairments. For deaf, hard-of-hearing and visually impaired audiences, online performances suddenly came with captions, British Sign Language and audio-description as standard. And the option to watch from home helped some autistic and learning-disabled people to enjoy the theatre free from strict expectations around silence and stillness.

Some of the UK’s biggest theatres are committed to maintaining an online theatre programme after Covid. The Barbican in London is keeping some shows as purely online experiences, while the Young Vic has committed tois streaming all of its main-stage shows. Sadler’s Wells launched its Digital Stage last year, and will keep it into 2022. But others are reducing their streamed performances, perhaps in the hope of getting people inside theatres again. The Birmingham Hippodrome and the Royal Exchange in Manchester do not list any online performances at all. And in the rush back to full houses, captioned, BSL-interpreted and relaxed performances are once again becoming rare, with most theatres providing only one or two accessible showings of each play.

Andrew Miller, who was the UK government’s disability champion for arts and culture before setting up of the Disability Arts Alliance, says the lack of social distancing is keeping him out of his own sector. He used to attend roughly 100 shows a year, but now describes himself as “part of the socially excluded”. When he declines invitations with concerns about Covid, the response from theatres, he says, is “we hope to see you when you feel comfortable” – as if there’s nothing that could be done. In reality, theatres know – because they’ve been told – how they could do to help: simple measures like mandating masks, checking vaccine status, requiring proof of a negative test, and keeping a small section for social distancing would all go a long way. Such measures have been proven to work on Broadway. But the UK theatres are turning a blind eye.

“We are determined that deaf, disabled and neurodivergent audiences are not left behind, as was so often the case pre-pandemic,” says Nickie Miles-Wildin, the associate director of Graeae, a theatre company for deaf and disabled creatives. She hopes that more theatres will enforce social distancing at their performances to allow clinically vulnerable people to return, as well as offering online shows. (Graeae’s current production, 10 Nights, is available as a download.)

And then there’s still the stairs, the narrow seating and, of course, the toilets. That theatres have remained pokey is especially galling when many venues had put off making such improvements before the pandemic as they would have to close for renovations. Historically, some theatres have hired “access consultants”, who advise on how to improve accessibility but may not necessarily be disabled themselves. Hiring disabled professionals would take the burden off disabled fans who often end up advising theatres for free; people such as Shona Louise, a theatre photographer and wheelchair user who campaigns for better access. It is “frustrating” that theatres have not used their time in lockdown to improve accessibility, she says. “We had such an opportunity to increase accessibility across the board – and we just decided not to take that up.” Advertisementhttps://1de64f88bf2aa1994dfca5af61f29784.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

London’s Old Vic has used the pandemic to install more accessible loos and create a lowered section of its bar that will enable wheelchair users to more easily order drinks (always a bonus, in my book). But there has been some regression, too. Shona and other activists recently complained when it emerged that the extremely popular Henry VIII musical, Six, would be moving from the Lyric to the Vaudeville theatre, which does not have an accessible loo. The Vaudeville’s stairlift (the only way wheelchair users can access the stalls) is unable to handle powerchairs. Conversations with the Vaudeville had been “constructive”, she says – but ultimately they should never have been necessary in the first place.

The answer to all these issues is to have more disabled people working in theatre. “There is no one fighting for us on the inside,” Shona says. As theatres reopen their doors, the back-to-normal narrative is, as John says, “nothing less than a betrayal. We know they can do it when it suits them.”

Liverpool Teacher Shortlisted For $1m Global Teacher Prize

October 18, 2021

A UK PE teacher who has pioneered new ways of teaching sports to visually impaired children at a special needs school in Liverpool has been shortlisted for this year’s prestigious global teacher prize.

David Swanston, a teacher at St Vincent’s school, is in the final 10 out of 8,000 nominations and applications for this year’s $1m (£730,000) award, which is intended to showcase the work teachers do preparing young people for their future. It is funded by the Varkey Foundation and endorsed by Unesco.

He is joined by Elliott Lancaster, a 24-year-old postgraduate student at Keele University, who is shortlisted for the first Chegg.org global student prize, a sister award that rewards exceptional achievements in learning and extracurricular activity, with a $100,000 prize.

Swanston has taught children with visual impairments for more than a decade at St Vincent’s, which is a specialist school for children with sensory impairments. In 2020 he was appointed deputy principal.

Swanston specialises in PE but teaches a range of subjects including geography and art. He pioneered techniques to enable students with visual impairments to participate in sports, since they on average accumulate less than half the recommended 60 minutes of moderate daily activity. Several of his students have gone on to become Paralympians.

His work has included modelling techniques and examples to enable blind students to understand how sports pitches are laid out. He is developing a version of rugby specifically for blind children, which uses textures and electronics to model game play and create ball prototypes.

If he wins the global teacher prize, Swanston plans to use the funds to support physical activity, horticulture and wellbeing programmes at the neighbouring Alder Hey children’s hospital, as well as to develop inclusive and blind ice hockey across the UK. He will also use the funds to support his charity, Sightbox, which aims to improve access to adapted sport for visually impaired students in developing countries.

Lancaster is a postgraduate student at Keele University and a sustainability campaigner. In 2016 he established a social enterprise app in Newcastle-under-Lyme called Utter Rubbish, which updates local residents on recycling policies in their local area. There are now plans to roll out the service in other local councils. He has also set up a network of sustainability volunteers, who lobby for organisations to become carbon neutral.

In his academic work, Elliott has published two award-winning studies looking at interdisciplinary learning and the impact of coronavirus on blended learning.

Sunny Varkey, the founder of the Varkey Foundation, said Swanston and Lancaster’s nominations “highlight the importance of education in tackling the great challenges ahead from climate change to growing inequality to global pandemics”.

The education secretary, Nadhim Zahawi, congratulated Swanston and Lancaster on their nominations. He said that after a recent meeting with Lancaster he had been “so impressed by his passion and commitment to issues like sustainability”, and he praised Swanston for his “innovation” and “inspirational work”.

The winners of both prizes will be announced on 10 November in a virtual ceremony hosted at Unesco’s headquarters in Paris.

Four Hour Telephone Assessment Slots Misery

October 18, 2021

With many thanks to Benefits And Work.

 

Homelessness charity Groundswell have contacted us to warn that the DWP appear to be introducing a four hour slot system for telephone assessments, instead of giving a fixed-time appointment for a call.

Staff from the charity came across the practice in connection with a work capability assessment (WCA) for a universal credit applicant.

The 4 hour window raises huge problems for organisations who wish to provide a support worker to assist with giving evidence at the assessment, because few charities can afford to have a staff member sitting at a claimant’s home for up to four hours waiting for a call.

In addition, the protracted wait is likely to cause enormous distress to some claimants, especially those who experience anxiety.

The DWP’s explanation for the four hour window is that sometimes assessments overrun, so it is difficult to give a precise time when an assessor will be available.

The only concession that appears to be being made is that claimants can ask for a 9am or 1pm appointment in order to be first on the list for the morning or the afternoon. But clearly these slots will be in short supply.

We don’t yet know if this practice is now widespread and whether it also applies to WCAs for ESA and for PIP assessments.

If you have had a similar experience we’d be grateful to hear from you either with a comment below the line or by using our feedback form.

FA Aims To Be ‘Beacon For Society’ As It Reveals First Disability Football Plan

October 15, 2021

The Football Association has pledged to increase the number of people playing disability football in England by 50% in three years, as it announced its first plan to support the game.

Currently 4.5% of people with disabilities play football, fewer than the 5.9% who play golf. The FA’s Football Your Way plan intends to create 2,800 new opportunities to engage in the game – from greater provision at schools to a new “recreational football offer” for adults. It also has broader ambitions to change the culture around football and disability.

The FA’s director of women’s football, Baroness Sue Campbell, has developed the plan, alongside the director of equality, diversity and inclusion, Edleen John. Campbell says it represents an organisation “looking to drive change”.

“There’s a lot of good work gone on in the past but very much on the back of pioneers,” she added. “This is the first time as a Football Association that we have had a coordinated plan which covers all of our divisions. It’s about focusing our energy on getting more disabled people to play our game to enjoy our game and to stay in our game.”

Campbell said he plan was born out of recognition that there had not been enough work on disability inclusion, but also that the quality of the work could be improved. “It reminded me very much of where the women’s game was five or six years ago,” she said.

The FA intends to expand the pathway for players looking to reach the top and will create women’s national teams for blind players and those with cerebral palsy. A target of 1,000 new disability football coaches has also been set, with current players set to be fast-tracked into the roles. The percentage of people with disabilities on the FA’s payroll is targeted to grow from 3.3% to 10%.

Disabled people are twice as likely to be inactive as non-disabled people, figures further affected by the pandemic. Campbell says that information and instilling confidence are the most important factors in making the plan work but that football has an ability to drive change more broadly in society.Quick Guide

“Information is key, but my experience is that at starter level it’s about confidence,” Campbell said. “That’s why we want to say it isn’t all about heavy competition. If you just want to come and play for fun we’re going to create opportunities for you where you [don’t] feel you’re going to be measured or that you might be hurt. That might sound overprotective but I think the reality is we’ve got to get people back in playing and enjoying being active again.

“I passionately believe that football is a powerful way to get messages into society. If we can demonstrate our commitment and really make a difference to people’s lives, maybe we can be a beacon for other people in society to recognise that we should and could do more.”

Birmingham Teenager Receives Award For Sign Language Lessons

October 15, 2021

A teenager who has helped more than 80,000 people learn British Sign Language (BSL) has received an award.

Tyrese Dibba, 16, who has Charge Syndrome and is deaf and partially sighted, created a series of videos teaching BSL during lockdown.

The videos were released with charity Sense in a bid to tackle isolation among people with disabilities.

He received a Points of Light award from the prime minister and said he was “a bit surprised” to be recognised.

The charity said Tyrese was star of of its Sense Sign School which taught tens of thousands of people BSL via free online classes.

The Points of Light awards recognise an individual each day who has made an outstanding contribution to volunteering in their community.

Tyrese, from Birmingham, said: “I’m happy so many people wanted to learn some basic sign language. I’m a bit surprised to be recognised for my work by the prime minister.”

Richard Kramer, chief executive of Sense, added: “He’s an inspirational young man who has overcome challenges to get tens of thousands of people learning sign language.

“We can’t think of anyone more deserving of winning this award.”