On the cover of his superb debut, Cola Boyy sits strumming a guitar surrounded by various cartoon versions of himself, a jukebox in the corner of the room and his prosthetic leg on a table, next to a gun. “I wanted to take my disability and put it on blast,” the southern California musician, real name Matthew Urango, who was born with spina bifida and scoliosis, has said. His music has a similar playfulness – it’s hard to beat his publicity team’s apt description of it as “a time-travelling Delorean with Prince in the passenger seat” – though fuelling it all are prescient themes of unity and kicking back against the system.
Opener Don’t Forget Your Neighbourhood, with guest production from sampladelic team the Avalanches, is a deliriously upbeat paean to fighting for your town and belonging. Song for the Mister, dedicated to struggling single fathers, channels late-night minicab pop and pulls off the tricky balance of being irresistibly catchy and yet wonderfully moving. Air’s Nicolas Godin, MGMT and LA keysman-to-watch John Carroll Kirby crop up too amid the sugar rushes of disco, funk, house and psychedelia.
The giddy ride ends with Kid Born in Space, referencing people who have mocked him, though Cola Boyy is having the last laugh: Prosthetic Boombox is a slick pop rocket firing off towards exciting new dimensions.
Fourteen Years Of Same Difference!!!
It’s hard to believe but it’s true. Same Difference started fourteen whole years ago today!
In that time it has grown beyond my wildest dreams.
But, readers, I have never once forgotten that I wouldn’t be here without you. This is my annual post of thanks, and my reminder to you all that I still read every comment and appreciate every hit.
I wish every single one of you the very best, always.
Samedifference1
Guardian Interview With Jo Whiley
The Guardian have interviewed Jo Whiley on her campaign to change the vaccine priority list and her work as a DJ and presenter.
Disabilitease: The Disabled Performers Owning The Stage
What connects burlesque, body confidence, and people with hidden disabilities? Emma Donohoe meets the performers owning their sexuality and challenging perceptions as part of a new documentary for BBC iPlayer.
Through cabaret and burlesque they’re trying to put together a show called DisabiliTease… but it’ll be touch and go whether they can they sell enough tickets to make it succeed.
“I feel like I’m flying, don’t feel my pain anymore…a lot of people don’t think we’re sexual or have sex… it’s seen as shameful and should be hidden, [but] it’s nothing to be ashamed of,” says Dottie May, one of the performers.
Every cast member in DisabiliTease has a disability. In coming together for the first time their goal is to create a platform for people with disabilities both visible and invisible – where they can showcase their talents and find their performances empowering and liberating.
A deaf campaigner is taking legal action against the government, after complaining that it failed to provide in-person British Sign Language (BSL) interpreters at No 10 Covid briefings.
Katherine Rowley, 36, from Leeds, says the government breached its obligations under the Equality Act to make broadcasts accessible to deaf people.
She says the failure to convey vital facts led to “stress and frustration”.
The government said it was “committed to supporting disabled people”.
A spokesperson said BSL interpretation of the No 10 coronavirus briefings was available on the BBC News Channel and BBC iPlayer, which could be accessed via Freeview.
“We continue to work across government to ensure that information and guidance is fully accessible,” he added.https://emp.bbc.co.uk/emp/SMPj/2.43.2/iframe.htmlmedia captionVicky Foxcroft MP asks the PM why there is no sign language interpreter in his briefing room
Ms Rowley was 25 weeks pregnant when she started the claim for a Judicial Review, which will focus upon two Covid briefings in September and October 2020.
During those two briefings there was no sign language interpreter at all, either in person or superimposed by broadcasters.
She says the stress she suffered in being unable to access government information during the briefing, impacted on her pregnancy and her wellbeing.
Speaking to the BBC through an interpreter, Ms Rowley said: “It was frustrating. Why wasn’t there an interpreter on the television?
“It’s important to get that information – the world should know – and for me, on my own, where is that information?
“I feel ashamed – I’m deaf, I can’t access information – but really it isn’t my fault, not at all.”
At the High Court on Wednesday, Ms Rowley’s barrister Catherine Casserley argued there has not been a BSL interpreter present in the room with the speakers at any of the UK government Covid briefings in England, unlike in Scotland and Wales.
She said providing “on-platform” interpretation would have been more inclusive than broadcasters superimposing an interpreter, because it means the sign language is visible wherever and whenever footage of the briefing is shown.
‘It became impossible’
The government was failing to meet the obligations of equality legislation and it should be ordered to provide on-platform legislation, Ms Rowley’s barrister said. She is also seeking compensation for injury to feelings, the barrister added.
Zoe Leventhal, the barrister representing the Cabinet Office, said the claim should be dismissed.
She said “damages for injury to feelings” were “not merited here”.
Mr Justice Fordham, who oversaw the online trial with sign language interpreters, said he would deliver a ruling at date to be determined later.
The High Court heard that there are 70,000 deaf people in England who use British Sign Language.
Ms Rowley’s solicitor Chris Fry said he is also representing 350 other deaf people who have made similar claims to Ms Rowley, but their cases are on hold until this one is decided.
Many who use BSL as their first language say they cannot rely on subtitles because the average reading age for deaf people is nine years – much lower than those in the hearing population.
“I have dyslexia myself – I am a slow reader – so that means when I was reading the subtitles, I would miss so much information and [it] would just mess up my head. It would be so difficult – it became impossible,” Ms Rowley told the BBC.
Lynn Stewart-Taylor started the #WherestheInterpreter campaign after the first Covid briefing in March 2020.
Despite watching it, she said she came away with nothing of what had been said, as there was no interpreter.
“Lots and lots of other countries have managed to get the interpreter in the same room. It’s accepted that members of the deaf community get the information at the same time as the hearing members of the community.
“We seem to be the only country that haven’t been able to make that happen and we feel very separated and segregated.
“We don’t feel accepted, we don’t feel that our language is respected and recognised. It’s almost as if we don’t exist.”
Mr Fry, the solicitor representing hundreds of deaf people in their claims, said: “Ensuring that information is provided in an accessible format can rarely be more important than in the midst of a pandemic.
“This case has brought deaf people together in the most remarkable way to challenge the government to do better, and to fulfil what we say are its obligations under the Equality Act.”
‘Unsafe and scared’
Amanda Casson-Webb, joint chief executive of the Royal Association for Deaf People, said this was the first time the deaf community had joined forces to litigate a Judicial Review on the provision of sign language interpreters.
A government spokesperson said: “We are committed to supporting disabled people through every stage of this pandemic and have established BSL interpretation at the No 10 press conferences via the BBC News Channel and iPlayer, available on all TV packages as part of Freeview.
“The BBC has also made their video feed for the BSL interpreter available to all other broadcasters and for use on No 10 social channels.”
But deaf people supporting the Judicial Review say having an in-person interpreter at briefings avoids any technical issues and ensures that a BSL-interpreted version is available on any channel.
Covid Vaccine To Be Required For England Care Home Staff
This is good news, and a victory for common sense and for the protection of the most vulnerable.
Vaccinations are to be made compulsory for care home staff working with older people in England, the BBC understands.
The move, first reported in the Guardian, is expected to be announced by the government in the next few days.
Care staff are expected to be given 16 weeks to have the jab – or face being redeployed away from frontline care, or lose their jobs.
The government is also set to begin consultations on compulsory vaccination for other health and care staff.
Care organisations have warned that compulsory vaccinations could cause significant difficulties in a sector which already struggles to recruit.
The government, however, is believed to have considerable concerns about low take-up of the vaccine in some areas, including London.
Workers who can prove they are medically exempt from getting the vaccine will not be affected by the measure.
The move follows a consultation by the Department of Health and Social Care.
A department spokeswoman said: “Vaccines are our way out of this pandemic and have already saved thousands of lives – with millions of health and care staff vaccinated.
“Our priority is to make sure people in care homes are protected, and we launched the consultation to get views on whether and how the government might take forward a new requirement for adult care home providers, looking after older people, to only deploy staff who have had a Covid-19 vaccination or have an appropriate exemption.”
She added that the department’s response to the consultation would be published “in due course”.
With many thanks to Benefits And Work.
Joy Dove, the mother of Jodey Whiting has condemned the ‘abominable’ behaviour of the DWP as they resort to dirty tricks to prevent a second inquest into Jodey’s death, with even the High Court judge criticising their callous behaviour.
Jodey died in February 2017. Her ESA had been stopped after she failed to attend a work capability assessment.
Jodey had been seriously ill with pneumonia, had been receiving treatment for a cyst on the brain and was taking strong painkillers. Nonetheless, she had been refused a home assessment for her ESA and failed to open the appointment letter for a WCA at an assessment centre.
As a result, her benefits were stopped.
An inquest into Jodey’s death lasted less than an hour and failed to even look at the part the DWP played in the tragedy.
Her family have since been fighting for a new inquest to properly examine the part played by the DWP.
The DWP have known since December that a hearing was due to take place on 22 June.
Yet with just three weeks to go, the DWP suddenly applied to be made a party in the case and to have permission to address the court orally on three separate matters.
This would have made the case last much longer, probably meaning it would have to be relisted for a later date. It would also have greatly increased the costs for Jodey’s family and massively increased the distress her mother is experiencing as she takes on the coroner’s court system and the DWP.
The judge in the case was very critical of the DWP’s late intervention.
Instead of allowing three oral submissions, they are only allowing written submissions on one point.
This still means the case will last for one and a half days, instead of just one day
Joy Dove said:
“I am appalled by the behaviour of the DWP. I believe they caused my daughter’s death by their callous disregard for the anguish they caused her and now, with the same abominable attitude towards ordinary people, they are causing me more distress. They have known about my application for a second inquest since December and only now, just 10 days before the hearing is due to take place, have they got around to addressing Jodey’s case.”
Leigh Day partner Merry Varney said:
“We are pleased that the judge recognised that the Secretary of State’s behaviour towards Joy Dove has been woeful and that at this stage he has only allowed her lawyers a limited narrow role in the hearing in her application for a second inquest into the death of her daughter.
“The conduct of the Secretary of State has caused significant additional and wholly avoidable, distress for our client. No adequate reason has ever been provided for the delay and now, at this very late stage, because the hearing will now take longer, she has put our client to extra expense and inconvenience, as well as worry and distress. We welcome the Court’s recognition of the lack of apology or regard for our client by the Secretary of State and our client and her family hope the High Court will recognise the ongoing need for justice for Jodey and to allow her daughter the inquest that her case clearly merits.”
Medical treatment was withheld from people with learning disabilities during the pandemic, The Telegraph can disclose.
Patients admitted to hospital with Covid-19 were not given potentially life-saving treatment because of their conditions.
The learning disability charity Mencap said they were aware of cases where “treatment was withheld” and this led to the patient “dying prematurely”.
The disclosure will fuel concerns about how patients with learning disabilities were treated during the pandemic and raise questions about how medics view individuals with such conditions.
Office for National Statistics figures from last year show that nearly six out of every 10 people who died with coronavirus in England were disabled.
Last week, the Telegraph revealed how patients with mental illness and learning disabilities were given “do not attempt resuscitation” (DNR) orders in England during the pandemic.
Matt Hancock pledged to investigate orders that were “inappropriately” given and said that he wanted to “know” about any cases where people may have been “disobeying the guidance”.
The Telegraph has been told about cases where people with learning disabilities did not receive some treatments during the pandemic.
Edel Harris, chief executive of the organisation, told The Telegraph that “during Covid some people did not receive the level of care they deserved when they were admitted to hospital”.
“We are aware of cases where families believe treatment was withheld because their loved one had a learning disability and, in some cases, this led to them dying prematurely”, he said.
A woman whose sister caught Covid-19 in a care home in the south of England has also alleged that her relative was denied treatment because of her disability.
Sherin Ratcliffe’s sister – who was in her 50s and had down syndrome – caught Covid-19 in the care home where she lived.
Once in hospital, Ms Ratcliffe’s sister – whom Ms Ratcliffe has asked The Telegraph not to name – struggled to breathe.
Ms Ratcliffe said her sister was “a jolly soul”, but had the mental age of an 18-month old and was non-verbal. She moved into the care home after her parents became too elderly to care for her.
When her sister was being treated, Ms Ratcliffe asked about use of a CPAP mask – a machine used during the pandemic to help patients breathe more easily – and a doctor said “‘it would be too distressing’ for my sister to administer more intensive treatment because they couldn’t sedate her to apply this kind of treatment, she had to be conscious for it”, she said.
A couple of days later, the hospital said that her sister’s oxygen levels had dropped further and the next step would be palliative care.
Ms Ratcliffe’s sister died on April 26.
Ms Ratcliffe said that although the hospital did their best for her sister, she was “concerned that given the pressures that they were under… it just becomes a de facto thing that for people with learning disabilities, the treatment only goes up to a certain point and then will not continue”, she said.
A drumbeat comes in, then the keyboard. A sequence of notes marches towards the singer.
“I pictured a rainbow
You held it in your hands
I had flashes
But you saw the plan”
The music reached somewhere deep in Thomas’s brain.
And as the lyrics of The Waterboys’ 1980s hit, The Whole of the Moon, came through Thomas’s earphones, he experienced six flashbacks – each triggered by the one before.
For the 30-year-old, this was an extraordinary moment. One he had craved for 10 long years – ever since his entire memory had been wiped when he was hit by a car. “It was the most magical thing ever,” he says of the memory-chain.
“I was sitting on this weird blue floor and I could see this silver radio. Then, I was in another place and I was holding this man’s giant hand… and then there was another memory.”
He recalled a Christmas tree, towering over him. “There was a woman standing, and she was young and she was smiling and she didn’t have grey hair. It was my mum and I was her little boy. And it was real.”
Thomas immediately wrote the memories down.
He needed to be sure they were real, and it wasn’t his brain playing tricks on him. Could it simply be another manifestation of his brain injury, like the personality change and face-blindness he had contended with?
But if the flashbacks were real, how had his brain, finally, managed to unlock his memory?
It was evening and still busy in central London when Thomas Leeds headed to Green Park station to pick up a lift from his father. The 19-year-old was on a gap year before starting university and had been to meet a friend.
At 21:00 GMT, he crossed the road and was hit by a car.
The officer who witnessed the accident was visibly traumatised when he later recounted what had happened.
Thomas had been thrown over the roof of the taxi and landed on his head. The front of the vehicle had been dented, the bonnet wrecked, the windscreen smashed and the roof concaved by the impact of his body.
Thomas’s father, Dr Anthony Leeds, rushed to St Thomas’ Hospital after the police called telling him there had been an accident.
But Thomas, it seemed, had been extraordinarily lucky and escaped with a minor head injury. “There was very little evidence of injury other than scratches and bruises,” Anthony remembers. The next morning, Thomas was discharged from hospital.
Over the next couple of days Thomas complained of nausea, a terrible headache and back pain. When the police officer phoned for an update he was shocked to learn Thomas had been discharged. This unsettled Thomas’s mother, Jacqueline. “The officer’s feeling was no-one could walk away from that,” she says.
After hearing this, she took Thomas to A&E and demanded a scan. It revealed the “utterly shocking” truth – a blood clot had formed in his brain.
“He was 24 hours away from death,” Anthony says.
Thomas underwent surgery to remove the clot. And when he came around in the intensive care unit, he was said to be docile.
“I have vague memories of being very confused, but oddly enough I wasn’t afraid. I didn’t know to be afraid,” he says. “I was like a baby.”
He describes being in an “emotional bubble” – something brain injury charity Headway says is common after a head trauma because of the chemical imbalance caused. It can leave the patient feeling, surprisingly, content.
Thomas enjoyed seeing the people who came to visit him as he recovered. Though they seemed familiar, when they told him they were his parents and his five siblings, he couldn’t recall them.
Everyone put this early confusion down to the effects of the morphine.
“He walked and talked and that to us was fine,” Jacqueline says. “That’s the most we could have hoped for, so we didn’t go probing. We all assumed Thomas was okay.”
But when he returned home, Thomas didn’t remember the house – even though he’d lived there since childhood.
People tried to jog his memory about what he had been doing in the months before the crash by mentioning friends and the interests he had.
“I really tried to fit in with everybody when they told me these stories,” he says, but he remembered nothing.
Realisation slowly dawned on the family – Thomas had lost all of his pre-crash memories.
Initially this didn’t faze him. The first few years drifted past as he recovered from three back fractures also sustained in the accident. He says the “emotional bubble” continued to cocoon him.
“I suppose it’s how most people remember their childhood summers. Everything was wonderful, so big and unlimited, and I sort of remember – it sounds so silly – just sitting in the park under trees.”
Thomas was fortunate because, although he couldn’t remember his school days, he had retained basic levels of reading, writing and maths. What had gone was his cultural knowledge and references – the things at the heart of conversations and relationships.
And while he was able to make new memories, his personality had changed, too. This is something a traumatic brain injury can do. Previously, he’d been cooler and more reserved, but now he was affectionate and excitable.
“My brother wasn’t glad that I’d had this accident but he was like, ‘You’re much nicer’,” Thomas jokes. His mum Jacqueline noticed it too. “He is very emotional. He’s very open. There’s something of the child that isn’t in the others.”
As Thomas recovered he began to wonder about his future.
He thought about the university place he’d been due to take up before the crash. He had planned to study design, but when he looked at his drawings they no longer interested him.
“That boy that I was, just feels no more real than an ancestor. You know they existed and maybe you’ve seen pictures but they don’t feel real,” he says. “The first few years it didn’t bother me. We were all so young so everything was about ‘tomorrow’. But as our 20s ticked by, everything became about ‘yesterday’.”
Thomas’s future had stalled. Meanwhile, his siblings and friends were now in their mid-20s and had moved on with careers, houses and children.
“I still felt very lucky to have all that I did and just be alive, but having to face the hard facts of the future without a beginning started to feel really unfair.”
And there was something else missing in his life too – love.
Internet dating was starting to get a better reputation by 2010, so Thomas signed up. He met a few girls but nothing came of it. Christmas was approaching when he arranged to meet Sophie. She was also a Londoner, and also had five siblings.
After telling her about his unique situation, they met for dinner and went for a wander through the West End. They hit it off and planned to meet the next day. As they parted, Thomas said: “I’m sorry, but I won’t recognise you tomorrow.”
There was another complication from the crash. Thomas had developed prosopagnosia – face blindness. It meant he couldn’t recognise anyone out of context, not even his parents, let alone a girl he had just met.
With face blindness, the brain is unable to recognise the variations in faces – the arch of an eyebrow, the angle of a tooth, all of which help us identify people.
Many of the 1.5 million people in the UK who have it are born with it, but Thomas’s accident had damaged a small area at the back of his brain responsible for vision, recognition and co-ordination.
He learned strategies to recognise people using location, context and dropping pins in mobile phone maps, and he can place someone on hearing their voice. But there was something different about Sophie. “The week before we met, she’d dyed her hair bright red, that sort of crazy red. She was like a beacon.”
For the first time in years, Thomas was able to recognise someone in a crowd, and their love story began.
They dated and two years later they married. Soon after, one daughter came along, then another. Sophie never stopped dying her hair and is still the only person Thomas can recognise.
“She’s amazing. She always makes me feel that she’s lucky to have me. It made me feel a lot better about the future.”
Ten years on from the accident, although Thomas had re-visited locations from his past and interrogated family and friends, none of his memories had returned.
And then came the remarkable breakthrough. Thomas had curated an ’80s playlist for his 30th birthday – music he, apparently, grew up with. The night before his party, he went to bed and put his earphones in. He listened to the playlist track-by-track and knew all the songs by heart.
He pressed skip one more time. Somehow, the track The Whole of the Moon, which peaked at number 3 in the UK charts, located Thomas’s past.
“It really changed everything for me,” he says of the series of flashbacks.
“It was so short, nothing was said, but knowing that it was real and I’ve got it in my head and it’s not just a story, and it’s not just a grainy photograph … it was a little bit of my beginning.”
To explain the science behind the flashbacks, neurologist Dr Colin Shieff says memories are made up of “packets of chemicals” involving various dimensions including smell, taste and touch.
“It just needs little memory chemicals floating around to trigger a slightly bigger picture,” he says. “That causes a cascade that he translated into a vision.” After years of miss-firing, the packets of chemicals in Thomas’s brain had collided and unearthed memory.
So were they always there?
Dr Shieff says Thomas’s long-term memory is probably still there but remains out of reach in an “absolutely terrible filing system”.
“You can have a manuscript of a book, and when you read it it’s wonderful. But if you drop those sheets and someone picks it up, then they’re faced with pages with lots of content that doesn’t follow. Some of the pages have got a bit screwed up and crumpled.”
A second burst of memories happened years later when Thomas came across The Snowman on YouTube while he was trying to learn about the childhood references he had lost. The unique images and soundtrack triggered another memory – lunchtime in the school canteen.
“It was enough to make me feel like I have an education,” he says.
Dr Shieff says “recovery can continue indefinitely”, so there is scope for Thomas to unearth more memories but no certainty.
As a stay-at-home Dad to his two young daughters, Thomas says “some days are better than others”, but little things like running around the park after his children can be difficult because face blindness makes it harder for him to recognise them.
He says the “empty years” sometimes get him down, but his daughters play in the same parks he once did, and he is creating new memories with them.
Another legacy of the crash is epilepsy, and on “bad head days” he can’t leave the house.
“The scar tissue of my brain interferes with the signals and is what causes me to have seizures. And that seems to be affecting my memory more and more.
“Knowing I might lose control of my consciousness can be quite terrifying.”
After a tonic-clonic seizure – where he loses consciousness – he temporarily loses about 10 years of memory. The last time it happened, he came round thinking it was 2008.
“I didn’t know who my wife was, didn’t know who the kids were. Sophie showed me the Amazon Echo smart speaker and it blew my mind.” He sees the humour in it now, and the family writes down these funny episodes so they’re there in black and white for Thomas to remember. Always.
He’s also become passionate about creative writing, an interest he apparently shares with his childhood self, and has written a fantasy-adventure for 8-to-12-year-olds.
His protagonist, Jayben, has epilepsy and wakes up with no memory in a world of elves – he’s a hero being hunted and must recover his memory before he is found.
He preferred writing a children’s book rather than a memoir because this way he wouldn’t be reliving his own story. He says it is therapeutic to turn the pain and difficulty into “something new and exciting”.
The book is the first in a series and has been signed by The Good Literary Agency. Thomas says he’s excited about the next chapter in his life. And while his writing moves forward, he is still trying to piece together his history.
“It’s been 18 years now and I am this person. It’s lovely knowing a little bit of who I was before, but I’ve had such a life now.” And he still treasures that flashback of his Mum at Christmas.
“Just knowing that I’ve got something real from before, from the beginning of my story, really helps me face the future.”
People with learning disabilities are still dying 25 years earlier than the rest of the population, a report has said.
The Learning Disabilities Mortality Review (LeDeR) calls for urgent action to prevent more avoidable deaths.
A quarter of learning disability deaths were caused by Covid in 2020, compared to 13% of other deaths.
NHS England said improving the health of people with a learning disability was a priority.
The LeDeR was established in 2015 to try to understand why so many people with learning disabilities were dying from avoidable causes, and to try and improve their access to healthcare.
The latest report compares data from the deaths of 9,110 people with learning disabilities who died over the past three years.
It found that while there had been some small improvements – life expectancy had increased by one year – people were still experiencing huge inequalities.
Pandemic highlighted disparity
In 2020, 24% of learning disability deaths were caused by Covid-19 compared to just 13% of deaths in the general population.
The peak month for deaths from Covid-19 was April 2020, when 59% of all deaths were from the virus.
It was the leading cause of death in men over 35 and women over 20 with learning disabilities throughout the past year.
Reviewers found that poor testing provision, a lack of support from specialist services and difficulties using the NHS 111 service played a part in many of the deaths.
In nearly a third of ‘do not attempt cardio-pulmonary resuscitation’ (DNACPR) orders made in relation to people who had died from Covid-19, the correct procedure was not properly followed.
In some cases, the reason given for a ‘do not resuscitate’ order was because the person had a learning disability.
One example cited in the report was because the person was “wheelchair-bound, needs to be hoisted, care home resident, learning disability.”
They also found many examples of poor care – in 42% of the deaths in 2020, reviewers felt that the person’s care had not met good practice standards.
‘Son denied use of ventilator’
Steven Baskin’s family feared that he could have become one of those statistics. The 43-year-old, who has Down’s Syndrome, was treated in hospital for Covid-19 at the beginning of the outbreak, in March 2020.
His father, John, was told that his son would not be given access to a ventilator should he need one, because of his “underlying health conditions”.
He said: “I received a call from a doctor who told me that a decision had been taken – should Steven require the use of a ventilator, then this would be denied.
“I was exercising in the park at the time of the call and had to find a bench to sit down – I was really taken aback.”
He discussed Steven’s condition with other senior doctors who intervened, and the decision not to give him a ventilator was reversed.
He said: “Steven had undergone treatment which affected his immune system, but other than this, he was perfectly healthy, and his treatment was going well.”
Steven recovered from Covid-19, but his family felt they had had to fight to get him the access to healthcare they felt he needed.
‘Not enough progress’
Report author Pauline Heslop, who is based at the University of Bristol, said: “This year, for the first time, we have been able to compare data based on the year of a person’s death.
“There are some small signs of progress being made, but this is not sufficient, nor sufficiently well distributed across people with learning disabilities from different ethnic groups.
“Actions taken to date, while welcome, have clearly not been enough to make the progress we should expect to see.”
Claire Murdoch, mental health director for NHS England, said: “Every year, people with a learning disability die sooner than they should and many from potentially avoidable conditions, such as constipation or aspiration pneumonia.
“Despite the pandemic, the NHS has ensured that three-quarters of people over the age of 14 with a learning disability have received their annual health check, two years ahead of the Long Term Plan target,” she said.
“It is vital we use this report to make real and lasting change to help close the health inequality gap seen throughout society.”
E-scooters in three cities will be modified to make an engine-like hum to alert people to their presence.
Provider Voi said 20 scooters in each of Birmingham, Bristol and Liverpool would be adapted as part of a trial to assess the impact on blind and partially sighted pedestrians.
It will also work with the Royal National Institute of Blind People.
It follows criticism from some quarters about the impact of the quiet e-scooters in trials across the country.
All Voi e-scooters are equipped with a bell, but Voi hopes the humming noise will now automatically alert other road users that an e-scooter is approaching.
However, Sarah Gayton, of the National Federation of the Blind of the UK (NFBUK), said it would be “terrifying” and would not protect blind people.
“It will be terrifying, this being emitted all over the pavement.”
She said if a visually-impaired person heard the noise, they “would probably freeze and stand still but wouldn’t be able to get out of the way”.
Andy Street, West Midlands mayor, welcomed the latest trial in Birmingham, the Local Democracy Reporting Service said.
“It is great to see Voi once again learning from people’s experiences on the road to adapt and change their scheme,” he said.
“The whole point of trialling e-scooters in the West Midlands is to see how best to integrate them into our towns and cities.”
The three-month pilot will run alongside a formal consultation on the use of artificial vehicle alert systems with visual impairment organisations, local authorities and police, Voi said.
But Ms Gayton said: “It’s gone past any mitigation – the trial just needs to end. The riders are literally out of control in Birmingham. It’s just not safe in that city any more.”
Earlier this week, West Midlands Police said it was starting a month-long operation to “tackle riders who break the law and put others at risk”.
The force said the move followed complaints about inappropriate use of e-scooters. Those caught face having it seized or having their accounts to hire one suspended.
Jack Samler, general manager at Voi UK and Ireland, said: “Electric engines on e-scooters, like those on electric cars and buses, are extremely quiet, which can be unnerving to other road users.
“By adding an appropriate sound we can hopefully improve the safety of our operations for all road users, including those who are vulnerable because of sight loss.”
They disappeared more than a year ago and many are still out of sight. When the pandemic hit, 53,000 under-18s in England with disabilities that made them vulnerable to coronavirus began to shield away at home.
Kept off school long after their classmates went back, and away from friends, they have found their childhoods put on hold. And while the vaccine rollout gave high-risk adults some reprieve in the new year, those aged under 16, who have not been eligible for any vaccine, are still living in limbo.
Yet we have barely heard a thing about disabled children’s plight through the coronavirus crisis – a silence that has not been helped by the faux-reassuring narrative that “no healthy child” has died from the virus. And now that the UK regulator has at last approved the Pfizer vaccine for 12- to 15-year-olds, this blind spot is becoming even more glaring.Advertisementhttps://a55a4e2610d50bee315ac7fe10ceddc1.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
The debate about immunising young people is centred almost exclusively on whether every teenager should be vaccinated in order to ease transmission. Clinically extremely vulnerable (CEV) children, meanwhile – who are desperate for protection themselves – are barely being mentioned.
I’ve spoken to many families with disabled children who have been living in fear over the last year. Parents going to work terrified they will bring the virus home to their child, or even quitting their jobs to protect them. Children who are shielding 24/7 at home, missing classes, socialising and routine activities. Some have had to choose between their education and their health, while others have had no say in it. I’ve heard from parents whose children have effectively been banned from classrooms because their disability means they’re unable to socially distance.
At the same time as missing school, children with disabilities have also had respite care and community schemes pulled; a survey by the Disabled Children’s Partnership found three-quarters of families with special needs had lost out on care and support services during lockdown.
It is hard to imagine politicians and the media greeting this with a similar lack of interest if it was happening to “normal” children. There is much concern about the impact on pupils of missing months of school, and rightly so – but there’s almost no recognition that some disabled pupils have missed an entire year, with no plan as to when they can return.
Disabled pupils are already less likely to get A* to C grades than their non-disabled peers owing to multiple structural barriers. The special educational needs and disabilities (Send) system was “in crisis”, according to the Ombudsman, before the pandemic threatened to push their life chances further back. This is only exacerbated by the fact that families with a disabled child are more likely to be in poverty, so often can’t afford a laptop or broadband for home schooling, let alone the complex disability support their child needs.
Ministers appear to be doing little to help bring disabled pupils back to classes. Even as the Delta variant of Covid spreads in schools, the government has dropped its requirement for secondary pupils to wear masks in class – much to the ire of teaching unions – – while the number of coronavirus tests being done in secondary schools is reportedly decreasing.
It is striking that Britain still has no plans for inoculating high-risk children, while other countries such as the US and parts of Europe have already made significant gains in vaccinating all teenagers. Contact, the UK charity for disabled children and their parents, tells me it is “surprised” that the Joint Committee on Vaccination and Immunisation (JCVI) thinks that “even CEV children are low risk, after they have been asked to shield for many months”. Data from the US shows that nearly a third of teenagers hospitalised with Covid this year required intensive care, and 5% required mechanical ventilation, while children with conditions ranging from congenital heart disease, diabetes, asthma, to sickle cell disease, could be at increased risk for severe illness from the virus.
There has long been concern that Britain’s “age-based” rollout has failed to fully recognise the risk facing disabled young people; at the beginning of the rollout, many younger disabled adults had to wait for a jab while healthy older people were given priority.
The JCVI is currently considering whether to include teenagers in the vaccine rollout, but in doing so it must prioritise the needs of those with disabilities. If it is decided that teenagers aren’t eligible for a vaccine, an exception should be made for any who are clinically vulnerable. If all teenagers are included in the rollout, CEV pupils should be at the front of the queue, just as CEV adults were. There is no reason this cannot be done alongside other priorities, such as giving jabs to children in variant hot spots such as Greater Manchester and urgently donating vaccines to adults in developing nations.
After the hardest of years, children with disabilities and their parents deserve action as soon as possible. Every day treading water is another day where teenagers are struggling at home away from friends and teachers, anxious about how to stay safe. There is one lesson that should not have to be taught: disabled children’s lives are worth just as much as anyone else.
E-Scooters ‘Not Safe’ Without Audible Signals
A visually impaired woman from London says e-scooters are not safe enough to be used across the city as they do not have audible signals.
The signals, which alert pedestrians to the silent e-scooters, will not be installed for at least two months.
Transport for London (TfL) said in May the e-scooters would have audible warning systems that could be used without riders adjusting their grip.
It now says that all e-scooters on the rental scheme are fitted with bells.
The RNIB (Royal National Institute of Blind People) said e-scooters posed potential risks to blind and partially sighted people because “they are fast-moving, difficult to detect, and are often ridden on the pavement despite this being illegal”.
London’s walking and cycling commissioner, Will Norman, said the trial could not be stopped to fit them.
He said: “We can’t stop the trial before everything is brought in because we need to continue to learn and continue to make improvements.
“New features will probably come in over time if and when concerns are raised.”
But Karishma Shah said it was a “massive risk”.
“I don’t think they should have been released without the audible signals or any form of inclusivity because we want to make them as safe as possible, not just for the riders but for every user group – people who use pavements, disabled people, older people, non-disabled people.”
London has become the latest UK city to launch a year-long trial in which e-scooters are available to rent. Riders can rent them in Canary Wharf, Ealing, Hammersmith and Fulham, Kensington and Chelsea and Richmond.
The scooters cannot be ridden on pavements and have been programmed to have a top speed of 12.5mph (20 km/h).
It is illegal to use privately owned e-scooters on public roads, pavements and cycle routes.
Ms Shah, who is from Croydon in south London, said she feared e-scooters as she has almost banged into them in the past.
“I fear things that I cannot hear but that I know are coming really fast and I fear that I have to consciously make so much effort to hear all these things just to carry on living like how a non-disabled person would,” she said.
Transport for London said it would be at least the end of July before audible sensors were installed on the e-scooters.
E-scooter operators, Lime, TIER and Dott – which are involved in the trial – said they could not provide exact dates for audible sensor installation, but that a shortlist of sounds was being tested.
Dott said it would have its first sound file tested in defined laboratory conditions by representatives of RNIB by the end of July but added signalling would not be rolled out immediately as the balance between audible detectability and noise pollution needed to be tested.
The RNIB said: “While having a properly researched and designed safety sound would help with detectability, we also need robust enforcement against pavement riding and parking, adequate off-pavement parking to be provided and the appropriate street infrastructure in place to keep pedestrians safe.”
Disabled People Miss Out On Almost £10M Of ESA
Families whose elderly relatives fell prey to so-called predatory marriages have backed calls for a change in the law.
The practice involves vulnerable adults being led into a marriage which financially benefits their new spouse.
Leeds North East MP Fabian Hamilton says hundreds of families have contacted him since he first raised the issue in Parliament in 2018.
He brought it up once again at Prime Minister’s Questions this week.
Prime Minister Boris Johnson thanked him for highlighting the “injustice” and said he would secure a meeting with the justice department as soon as possible.
‘Secret marriage’
Daphne Franks said her 91-year-old mum Joan Blass, who had dementia, was a victim.
Mrs Blass met Colman Folan, a man 24 years her junior, in 2011, the same year she was diagnosed with dementia.
He moved into her home a month later, but Ms Franks, from Gledhow, Leeds, said it was only when her mother died in 2016 that the family learned they had married.
“None of mum’s friends or family knew about the marriage. It was done in secret,” she said.
While the registrar believed Mrs Blass had the mental capacity to make the decision, Ms Franks said her mother’s dementia was too advanced for this to be the case.
“Mum struggled to remember her date of birth. She had no idea how old she was at her 90th birthday party 18 months earlier and she couldn’t remember her address,” she said.
“Who knows where she thought she was or what she thought she was doing when she got married.”
When Mrs Blass died, Mr Folan inherited all her property and possessions.
Under English law, the marriage revoked her previous will which left everything to her children.
“The secret marriage just destroyed that will as if it had never existed,” Ms Franks said.
“All the personal belongings in the house now belonged to him, including my wedding dress and my grandad’s letters from the first world war.
“It was just heartbreaking.’
The BBC has attempted to contact Mr Folan.
In a previous statement he said: “Mrs Blass wanted to marry me and I believed at the time, and still do, that she has capacity to make that decision for herself.”
Another family said their father was targeted by a “predator whose aim was solely to gain financial benefit”.
Kate, whose name has been changed, said her father, a widower, was vulnerable and taken advantage of when he remarried at the age 77.
She said her father died in 2018 and his wife went on to strip his bank accounts of £200,000.
Both families are backing Labour’s Mr Hamilton in his call for a clamp down on predatory marriages.
In 2018, the MP presented a private members’ bill on the issue to the House of Commons but has yet to meet the Registrar General to discuss changes.
He said: “It’s shocking that someone can be married without knowing the contract they’ve entered into or that they’ve married at all because of the dementia they’re suffering from.
“It’s about time we updated our marriage laws that date back to the 19th century and make sure that vulnerable individuals don’t find themselves in that position ever again.”
A press release:
Edinburgh author Lesley Kelly’s pandemic crime thriller series has been launched in braille for blind and partially sighted readers.
The ‘Health of Strangers’ crime fiction series, set in an alternative Edinburgh struck by a deadly virus, was penned in 2016-2020 prior to the Covid-19 pandemic.
The four novels follow the investigations of the North Edinburgh Health Enforcement Team as they fight to contain a spreading virus, encountering mystery, murder and corruption along the way.
Partnering with the Scottish Braille Press, based in Edinburgh, to produce all the ‘Health of Strangers’ titles in braille, Lesley is delighted that the series will now be even more accessible for blind and partially sighted crime fiction fans who read braille.
Lesley, who is based in Edinburgh and whose first novel, A Fine House in Trinity, was longlisted for the William McIlvanney Prize, said: “I am thrilled that my books are being published in braille for blind and partially sighted readers.
“The series is based on my work experiences in emergency planning, and accurately predicted a number of pandemic issues, including vaccine passports, hoarding, and debates about civil liberties. It also deals with isolation, which may reflect some of the experiences of blind and partially sighted people during lockdown.
“Reading has been a comfort to many people during Covid, and we’ve seen a huge interest in books with contagion themes, from Camus’s The Plague, to Scotland’s own Louise Welsh with her trilogy of virus novels. I hope braille readers enjoy my contribution to pandemic literature.”
The real-life Covid-19 pandemic has further highlighted and compounded the challenges many blind and partially sighted people face in the community, with many experiencing additional challenges such as difficulties with being able to adhere to social distancing and increased social isolation.
Easy and reliable access to accessible formats, including more literature and information available in braille, audio and large print, is essential to ensure blind and partially sighted people have equal access to important information, as well as the joy of reading for pleasure.
The Scottish Braille Press, which is run by sight loss charity Sight Scotland, is a leading provider of accessible media for businesses and individuals and has been producing accessible formats for over 125 years.
Mark O’Donnell, Chief Executive of Sight Scotland, said: “We are so grateful to Lesley Kelly and Sandstone Press for allowing the Scottish Braille Press to transcribe and publish Lesley’s Health of Strangers series in braille, enabling us to give braille readers access to Lesley’s fantastic crime thriller series. It is extremely important for equality, inclusion and personal security that accessible formats, including braille, are easily and readily available to people who require them.”
The Health of Strangers series braille editions are available to buy online at Sightscotland.org.uk through Sight Scotland’s Braille Bookshop, or call 0131 662 4445 to order.
US Approves First New Alzheimer’s Drug In 20 Years
The first new treatment for Alzheimer’s disease for nearly 20 years has been approved by regulators in the United States, paving the way for its use in the UK.
Aducanumab targets the underlying cause of Alzheimer’s, the most common form of dementia, rather than its symptoms.
Charities have welcomed the news of a new therapy for the condition.
But scientists are divided over its potential impact because of uncertainty over the trial results.
At least 100,000 people in the UK with a mild form of the disease could be suitable for the drug if it were to be approved by the UK regulator.
The US Food and Drug Administration (FDA) said there was “substantial evidence that aducanumab reduces amyloid beta plaques in the brain” and that this “is reasonably likely to predict important benefits to patients”.
Controversial trial
In March 2019, late-stage international trials of aducanumab, involving about 3,000 patients, were halted when analysis showed the drug, given as a monthly infusion, was not better at slowing the deterioration of memory and thinking problems than a dummy drug.
But later that year, the US manufacturer Biogen analysed more data and concluded the drug did work, as long as it was given in higher doses. The company also said it significantly slowed cognitive decline.
Aducanumab targets amyloid, a protein that forms abnormal clumps in the brains of people with Alzheimer’s that can damage cells and trigger dementia, including:
- memory and thinking problems
- communication issues
- confusion
‘Heading in right direction’
Aldo Ceresa, who took part in the trial, first noticed problems differentiating between left and right 10 years ago.
After his diagnosis, the 68-year-old, who is originally from Glasgow and now lives in Oxfordshire, close to his family, had to give up his job as a surgeon.
Mr Ceresa took aducanumab for two years before the trial was halted – and then had to wait almost as long for another trial, at the National Hospital for Neurology and Neurosurgery, in London, to begin.
“I’m quite happy to volunteer,” he says.
“I really, really enjoy this journey that I’m going through – and obviously the benefits I’m getting from it, which I’m very, very grateful for.”
He is convinced the drug has helped him.
“I feel like I’m not quite as confused. Although it’s still there, it’s not quite as bad.
“And I’m just getting that bit more confident now.”
Mr Ceresa says his family has noticed improvements too.
“Before, if I was going to get something, I couldn’t remember, you know, where to find things in the kitchen.
“That has become less of a problem,” he says.
“I haven’t caught up to the level that I was before – but I’m heading in the right direction.”
More than 30 million people around the world are thought to have Alzheimer’s, with most aged over 65.
For around 500,000 people affected in the UK, those eligible for aducanumab will be mostly in their 60s or 70s and at an early stage of the disease.
‘Very cautious celebration’
We need to keep our feet on the ground.
This is not a miracle drug, nor a cure for Alzheimer’s but it is the first treatment which tackles the destructive mechanism in the brain that drives the destruction of neurons.
And that makes this a landmark moment.
But scientific opinion both here and the United States is divided. While some have welcomed approval, calling it a milestone for millions living with Alzheimer’s, others believe the drug will only have marginal benefits.
Alzheimer’s charities say they will be pressing for an early decision in the UK – but that could take another year.
Lastly, we don’t know how much aducanumab will cost – it could be tens of thousands of pounds per patient each year. And if approved, access will be limited to those who’ve had specialist brain scans to confirm their diagnosis.
Despite all the caveats, this is moment for very cautious celebration.
Prof Bart De Strooper, director of the UK Dementia Research Institute, said the decision to approve aducanumab marked “a hugely significant milestone” in the search for treatments for Alzheimer’s disease.
In the past decade, more than 100 potential Alzheimer’s treatments have flopped.
But while he hoped it would prove a turning point for millions of people with the condition, he said there were “still many barriers to overcome”.
Prof John Hardy, professor of neuroscience at University College London, said: “We have to be clear that, at best, this is a drug with marginal benefit which will help only very carefully selected patients.”
‘Grave error’
And Prof Robert Howard, professor of old age psychiatry at UCL, went further calling the drug’s approval “a grave error” that could derail the ongoing search for meaningful dementia treatments “for a decade”.
He said the FDA had ignored data from the trial which showed no slowing of decline in cognition or function.
However, Alzheimer’s Society said the drug was “promising” but added it was “just the beginning of the road to new treatments for Alzheimer’s disease”.
Another charity, Alzheimer’s Research UK, said it had written to the Health Secretary Matt Hancock asking the government to prioritise the fast-track approval process for the drug in the UK.
Chief executive Hilary Evans, said: “People with dementia and their families have been waiting far too long for life-changing new treatments.
“It is now essential that regulatory authorities assess the evidence to decide whether they believe the drug is safe and effective for use in the UK.”
Although many doctors are doubtful of aducanumab’s benefits, its US approval could be a huge boost to dementia research, which is traditionally underfunded compared with cancer or heart disease.
Valentina Petrillo could this year become the first openly transgender woman to compete at the Paralympics. For the visually impaired Italian, selection for the national squad would be a dream come true – but she says she understands why other athletes may have doubts and questions about racing against her.
“I’m happy as a woman and running as a woman is all I want. I couldn’t ask for more,” says Valentina Petrillo.
“I’ve got a fire inside me, that pushes me. An emotional strength. Obviously, my body’s not what it was at 20 when I was at my peak, but my happiness pushes me to go further, to go beyond my limits.”
Passionate about running from an early age, Petrillo’s aspirations were seemingly dashed at the age of 14, when she was diagnosed with Stargardt disease, a degenerative eye condition, for which there is no cure.
After finishing school in her hometown of Naples, she moved to Bologna at the age of 20 to study computer science at the Institute for the Blind. Here she took up sport again, becoming a member of Italy’s national five-a-side football team for people with sight loss.
It was only at the age of 41 that she finally started running again, winning 11 national titles in three years in the male T12 category for athletes with visual impairment.
She is now 47, and recognises that this is her last chance to compete at the Paralympics, but she wants to keep running whether she gets to Tokyo or not.
In fact, it was only last September that she ran her first official race as a female para-athlete – at the Italian Paralympics Championship, where she won gold in the 100m, 200m and 400m T12 events.
Growing up in Naples in the 1970s, Petrillo says she was a “streetwise kid” who often got into fist fights.
“I defended my brother who’s three years older than me! Until four years ago, if you’d talked to Fabrizio (the name Petrillo was given at birth), Fabrizio would have given you the idea he was sexist. He was a tough guy who’d speak dismissively of women and then be a woman in his private space.”
She clearly remembers the day when, aged nine, she put on her mother’s skirt for the first time, “It was an incredible emotion. It was like touching heaven with your finger tip,” she says.
But she knew better than to tell anyone; by coincidence, she had a transgender cousin, whom her uncle had thrown out of the house.
And so Valentina continued life, as she puts it, “dressing up as a man”.
She achieved everything society expected of her – good grades at school, a stable job, a wife, a son – but still she wasn’t happy.
There was no triggering event but on 14 July 2017, she realised she could no longer suppress her secret.
“I hadn’t planned it. I was in bed with my wife, about to fall asleep, and I said ‘Remember I told you I once dressed up as a woman?’ She said yes. I said, ‘In reality it wasn’t once, I do it every day.'”
With her wife’s support – after the initial shock – Valentina started living as a woman in 2018, and in January 2019 she began hormone therapy, which affected her physically and emotionally.
“My metabolism has changed. I’m not the energetic person I was. In the first months of transition I put on 10kg, I can’t eat the way I did before, I became anaemic, my haemoglobin is low, I’m always cold, I don’t have the same physical strength, my sleep isn’t what it was, I have mood swings,” she says.
“I’m not the same as before. Fabrizio no longer exists.”
Hormone therapy for trans women is designed to lower testosterone levels and raise oestrogen levels to the typical values in women.
Quantities of both hormones are measured in a unit called a mole. Before starting therapy, Petrillo would have had about 20 nanomoles of testosterone in a litre of her blood (20 billionths of a mole). Since 2015, the International Olympic Committee (IOC) has required female athletes to have less than five nanomoles of testosterone per litre of blood, while most women have fewer than two nanomoles per litre. Petrillo is now consistently well below the two-nanomoles-per-litre level.
Six months after starting treatment she had lost about 11 seconds in the 400m and 2.5 seconds in her speciality, the 200m. But it was a sacrifice she embraced.
“As a sportsperson, to accept that you won’t go as fast as before is difficult. I had to accept this compromise, because it is a compromise, for my happiness.”
It has become Petrillo’s motto: “Better to be a slow happy woman than a fast unhappy man.”
In reality, she is not slow, just slower, as her gold medals in last September’s Italian Paralympics championships attest.
She has also fared well in competition against non-disabled women, some of whom have protested that a trans woman has a major advantage.https://emp.bbc.co.uk/emp/SMPj/2.43.0/iframe.htmlmedia captionValentina Petrillo’s first competition with able-bodied women, in Arezzo, October 2020 ©Ethnos
Fausta Quilleri, a lawyer from Brescia and a runner in the over-35s “Master” category, last month sent a petition to the president of the Italian Athletics Federation and the ministries for Equal Opportunities and Sport challenging Petrillo’s right to compete in women’s races.
“Her physical superiority is so evident as to make competition unfair,” she says, arguing that the IOC’s exclusive focus on testosterone “makes no sense” when physique is also a factor.
More than 30 female Master athletes signed the petition.
“If she wants to run with us we would be happy for her to do so. We will always welcome her but we don’t want her to compete with us for titles,” Quilleri says.
Petrillo was hurt that some of the women at one event refused to be photographed with her, but says she understands their reaction.
“I asked myself, ‘Valentina, if you were a biological woman and had a Valentina, a trans, racing against you, how would you feel?’ And I gave myself answers – astonishment, confusion and doubt. I would have those things as a woman. So I believe these doubts and questions are legitimate.”
However, she defends her right to compete in the women’s category.
“I respect and comply with the IOC and World Athletics rules, I do the tests. I don’t feel like I’m stealing anything from anyone.”
Running with limited vision
- Until recently Petrillo was running in the Paralympic T12 category, where T stands for Track and 12 is one of three groups of visual impairment
- In April she was reclassified as T13 – the group for runners with the least serious visual impairment – and has been competing this week at the European Para Athletics championship in the T13 400m event
- Petrillo sometimes finds it hard to see painted lines on the track, especially after rain – her preference is for white lines on a blue track
- When running against non-disabled runners, it’s a disadvantage being unable to see the finishing line, she says, as she doesn’t know when to make a final lunge
Petrillo is taking part in studies led by Joanna Harper, at the School of Sport, Exercise and Health Sciences at the University of Loughborough in the UK, on the precise effects of hormone therapy on trans women athletes.
A transgender runner herself, Harper has been in the unique position of studying the effects of hormone therapy on athletic performance first hand.
“Transgender women are on average taller, bigger and stronger than cisgender women (women who identify with the sex and gender they were assigned at birth) even after hormone therapy, and those are advantages in many sports,” she says.
But there is another side to it, she points out.
“Transgender women are now powering their larger frames with reduced muscle mass and reduced aerobic capacity and that can lead to disadvantages in terms of things like quickness, recovery and endurance.”
It will take at least 10 more years of research to fully understand the effect of hormone therapy, Harper says. In some sports trans women will need a handicap, she suggests, but how much handicap isn’t yet clear.
“Hormone therapy won’t turn trans women into cis women but the goal, in terms of sports, is to mitigate the advantages that trans women gain by virtue of going through male puberty, to the point where you can have meaningful competition between trans women and cis women.”
Meaningful competition is the key to defining all sporting categories, starting with the division of men and women, says Harper, author of the book Sporting Gender. From tall basketball players to left-handed fencers, acceptable advantage exists in sports all the time. “What we don’t allow is overwhelming advantage, so we don’t let heavyweight boxers get in the ring with flyweight boxers,” she says.
“There are many people who don’t think that trans women should be allowed to compete at all, and then there are many other people who think that trans women should be allowed to compete simply based on gender identity. And I believe in a middle-ground policy, where we allow for inclusion of trans women but have restrictions that are based on the physiology of sport and the biology of sex.”
No openly transgender athlete has yet competed at the Olympics or Paralympics, but this year that looks likely to change. Weightlifter Laurel Hubbard, a trans woman like Petrillo, is in contention for a place in New Zealand’s Olympic squad. Canadian Ness Murby, who competed in discus throw at the 2016 Paralympics, also recently came out as a trans man, and has been selected for the Tokyo games.
An article by Outsports names other trans women hoping to compete at the Olympics, but Petrillo is the only potential trans woman Paralympian mentioned.
She describes her life today as a visually impaired transgender athlete as an arduous journey that is far from over, but she is keen to share her story.
“I think my example is positive, of a trans person who does a sport they love,” she says. “Maybe if I’d seen a Valentina on TV when I was an adolescent, my choices would have been different.”
This is why she agreed to have her story fully documented on film – 5 Nanomoles: The Olympic dream of a trans woman will be released next year. She says making the documentary has helped her to get through some of the darkest moments of her journey, and surprised her too.
“Valentina is enjoying making this film! She really is and I’d never have imagined it. This is another thing that Fabrizio would never have done: Fabrizio would never have spoken on TV, or given interviews, or put himself out there. But Valentina does.”
Parkinsons, AI And Rory Cellan-Jones
For two weeks recently I got into a steady routine. At 10:30 each morning, I would sit at my kitchen table, strap three devices containing sensors to my right arm, and switch on a tablet computer. Then I would spend 20 minutes going through a series of exercises monitored by a man who popped up in a window on the screen.
The results of my endeavours will, I hope, help millions of people like me dealing with Parkinson’s disease.
My daily routine was part of a medical trial run by engineers from Imperial College and a start-up company they have founded, in collaboration with a consultant neurologist at London’s Charing Cross Hospital. Its aim – to use artificial intelligence techniques to develop a wearable device that could monitor the symptoms of Parkinson’s disease and even perhaps help to treat it.
For me that is an exciting prospect. I was diagnosed with Parkinson’s in January 2019 and the first thing I was told was that there is no cure for this disease which afflicts something like 10 million people and is the world’s fastest growing neurological condition.
‘Notoriously difficult’
There is medication to treat the symptoms but it is notoriously difficult to prescribe exactly the right dose of Sinemet and other drugs which act to replace the missing dopamine that makes someone with Parkinson’s shake or drag their foot. In my case, it was not clear to me that the drugs were working.
That is how I ended up being sent by my own consultant at St Mary’s Hospital Paddington for a second opinion from Dr Yen Tai, the neurologist at Charing Cross working with Imperial College. After he had prescribed me a new drug, we got talking about technology and how it might help in the battle against Parkinson’s. When he offered to enrol me in the Imperial trial, I leaped at the chance.
The exercises I did each morning – twisting my hand from side to side, holding it out in front of me, moving my arm up and down – were similar to what my consultant makes me do on my visits every four months. The idea is that the data recorded by the sensors and the video of the session will gradually teach the AI system how to grade symptoms in the way a human doctor does.
Neurologists use what’s called the UPDRS – the Unified Parkinson’s Disease Rating Score – to calibrate the severity of a patient’s symptoms. Earlier in the trial, other patients of Dr Tai had been assessed by him at his clinic, and his UPDRS ratings were then fed into the AI system as part of its learning data.
Ravi Vaidyanathan, reader in biomechanics at Imperial College and principal investigator for this research programme, laughed when I said the aim seemed to be to take Dr Tai’s brain and put it in the AI. “We are a few light years from being able to take what Yen’s brain can do,” he said.” But we are trying to take his diagnostic capacity into the automated system. And that’s how machine learning works.”
The Imperial team is not alone in exploring how wearable devices could be used to diagnose and monitor Parkinson’s. “Wearable sensors are quite a popular hot topic in Parkinson’s research for a number of years now,” says Dr Tai. A team at Apple, working with medical specialists, showed how the Apple Watch could be used to monitor symptoms and measure their response to medication.
But the Imperial team believes their trial goes further than any other in collecting data about all of the main Parkinson’s symptoms – stiffness of the limbs, tremor and slowness of movement.
What is exciting is what comes next. Later this year, SERG Technologies, the spinout from Imperial working to commercialise this research, hopes to have something much less clunky – “a nice, lean simple device,” says Ravi Vaidyanathan.
‘Tailored treatment’
“At first this could be used once more to put patients through various exercises to assess their symptoms but later the idea is that it could just collect data as people went about their daily lives.
“So when you just pick up a cup of coffee, when you pick up a pencil, when you pick up a pen, we would have something that you could wear unobtrusively all day that would keep recording what you are doing.”
Coupled with data about when a patient takes their medicine, the smart device could then provide continuous monitoring of how a patient responded. “Hopefully this will provide a more personalised, more tailored treatment to an individual patient,” says Dr Tai.
Further ahead, the wearable device could actually provide treatment. A new project supported by a £1m grant from the National Institute of Health Research, will explore shooting tiny amounts of current into the patient’s muscle to control tremors.
For all the work being done here and around the world to improve the monitoring and treatment of Parkinson’s, there is still no cure on the horizon.
“Ultimately we still need to have something that can slow down the brain degeneration process,” Dr Tai says. “But it doesn’t mean we can’t optimise treatment at the same time while we are trying to find a cure for Parkinson’s.”
I hope to continue on this journey seeking a better understanding and improved treatment of Parkinson’s. I will report back on any progress.
A press release:
Produced by Camilla Arnold and Sophie Allen for Flashing Lights Media
Executive Producer- Mark Rickards
A five-part series of essays that explores what it is like to be deaf in 21st century Britain. Each essayist has their own personal experience and take on what being part of the deaf community means to them. Some share the little-known divisions and politics of the deaf community and others share what makes the community so special and unique to the point where some deaf people consider themselves as a linguistic minority rather than disabled.
In a special approach to the usual format of the Essays on BBC Radio 3, three of the episodes are voiced by actors, while two of them are written and read in first person.
This series of essays is produced by Flashing Lights Media, a deaf-led television production company that aims to bridge the gap between the deaf community and the mainstream to break down cultural stereotypes and encourages new perspectives on the world around us.
Monday 14 June
Written by Abigail Gorman
Voiced by Natalia Campbell
Proud activist, Abigail Gorman, takes a personal look at what it means to be deaf when most of society would prefer you not to be. She shares what it was like growing up in a deaf family who were proud of their deaf identity but why she struggled to embrace her deafness for a long time. Abigail tells us of the arguments she had with her Mum when she first decided to get a cochlear implant- her Mum saw getting a cochlear implant as a rejection of the deaf community- and how she has finally come to terms with her deaf identity while learning more about a concept called audism- which explores the different approaches in the deaf community between people who strive to hear language and use speech and those who are deaf and use sign language. Abigail ends the essay on why she is now proud to be deaf and how the deaf community is a linguistic minority. She affirms her new-found belief that deafness is not a disability but a cultural identity.
Tuesday 15 June
Written by Robert Adam
Voiced by Ian Drysdale
Australian born academic Robert Adam takes us on a nostalgic journey through his early childhood and shares what it was like growing up in a family with deaf parents and siblings. He explores the dichotomy of writing an essay for a medium that he’s never had access to- radio. Within this exploration, Robert also considers what his voice might sound like if he could hear and speak. Robert takes us on a trip down memory lane as he shares his childhood memories of realising that not everyone in the world were deaf, the mystery of how telephones work and his fond memories of the ‘Deaf Club’ that was the centre of the deaf community. He ends the essay on the thought that when people think of being deaf as an isolating disability, they are not taking into account the rich, diverse and rounded cultural life that Robert and other members of the deaf community experience. .
Wednesday 16 June
Written and read by Teresa Garratty
Filmmaker Teresa Garratty gives us a frank and honest insight into what it was like to lose her hearing at the age of 18 and how she had to learn “how to be deaf”. There was no manual that she could read, no tutorial on You Tube with tips on how to cope with hearing loss. She discusses how her family and friends would express concerns about her getting involved in “that deaf world” as they saw the deaf community and its culture as alien. Teresa decided to learn sign language so that she could join the deaf community,however, she reveals how then she realised that sign language can be perceived differently within the deaf community. Sign Language can be like currency- sometimes it’s the case of the more fluency you have the wealthier and more respected you become.
Thursday 17 June
Written by Sannah Gulamani
Voiced by Kaajel Patel
Sannah Gulamani, a Research Assistant at University College London, shares with us how the existence of deafness can actually be seen as a positive, and not a negative because of inventions such as subtitles and video calls. Sannah, because of navigating through a world of ‘can’ts’, decided to study music at university. But her love of music is often questioned by those who believe that music is preserved for those with a ‘good ear’. Sannah delves in deeper to discuss how her intersectional identities are often misunderstood, and what identity means in terms of belonging. Within this exploration, she examines her interest in the linguists of British Sign Language and what propelled the career shift from music to sign language linguistics. Finally, Sannah explores whether it can be claimed that the deaf community is a space that is welcoming and safe for all deaf individuals? She looks into how racist and offensive signs are still being used as a result of white fragility and privilege.
Friday 18 June
Written and read by Sandy Deo
Sign Language Interpreter Sandy Deo brings a different experience to the Essay series, as she looks back at her cultural heritage and considers the realities, privileges and responsibilities of growing up as a child of a deaf adult – while not being deaf herself. She talks frankly about how she knew council and banking details from a young age because she had to interpret for her Mum but how this was an advantage as it meant that she was reading Matilda at the age of six. Sandy tells us of funny anecdotes where she and her siblings would take advantage of having a deaf Mum but also talks honestly about the realities of having to interpret for her Mum at family events as other members didn’t know how to sign and how being her Mum’s ears means she now can’t sleep deeply because of years of training to listen out for any odd noises in the house. But Sandy ends the essay on how being a child of a deaf parent is an identity that she’ll proudly own as the experience has instilled in her a drive to fight for, and to stand up for those who perhaps need a louder voice.
For Carers Week, Revitalise highlight the importance of the nation’s carers as they transition out of pandemic
A press release:
This Monday 7th June marks the start of Carers Week 2021, a week dedicated to raising awareness of the extraordinary efforts and many challenges facing carers every day around the United Kingdom. Respite care providers Revitalise would like to highlight the fantastic work they do looking after the nation’s most vulnerable people.
There were 9.1m family carers in the UK at the start of lockdown, and it is estimated that a further 4.5 million have taken on caring responsibilities since the COVID-19 pandemic. Many are solely responsible for the wellbeing of a loved one who may rely on them completely, sometimes 24/7, without any form of break. During lockdown, Revitalise received calls from carers in desperate situations, some talking of self-harm, an inability to cope, and even suicide.
Revitalise CEO Jan Tregelles said: “The nation’s carers perform such a vital role in keeping the country running, saving the NHS millions every year and go far beyond the call of duty to provide for some of the country’s most vulnerable people. We owe them a debt of gratitude.
“We would like the carers of this country to know that Revitalise are here to give you a warm welcome at our centre, should you need a break or change of scenery.”
Whilst caring can be a hugely rewarding experience, many carers often find it challenging to find time to look after themselves. Hilary cares for her son, Shaun, who is brain damaged after an accident in Ibiza when he was 19:
“There’s no let up, no way forward, no support. It’s just…everything. I really need a break, for my mental health. It just feels like hotels and restaurants are opening up, but disabled people are left to the last, at the bottom of the pile.
I’m never, ever, going to give up on my son. Life is too short you know; you need to keep fighting.”
Tracy, cares for her son, Conor, who was born with Cerebral Palsy Quadriplegia with learning difficulties. She said:
“I am just drained physically. It’s a terrible feeling waking up and being tired. I’d like to see the Government live in my shoes for a week. I’m older now and I need a break, and Conor needs a break from me also, he doesn’t want to be wrapped round me. But also I’m no good when I’m exhausted.”
One recent Revitalise guest, Lani, stayed at Sandpipers during lockdown and described her time at the centre.
Lani said:
“Thank you so much for saving me. At home, I was lonely, stressed and depressed. I thought Sandpipers would be just what I needed and it was. The beautiful surroundings, late night talks, laughing until I cried all just about made lockdown bearable.”
During the pandemic, Revitalise launched their ‘Care for Carers’ campaign, with a fundraising initiative to raise £1 million to build a support fund for disabled people and their carers as they transition out of lockdown. The charity succeeded with help from members of the public and actors Rory Kinnear and Joanna Lumley.
Revitalise would like the nation’s disabled people and carers to know that the charity are able to offer specialised, round the clock care from their Sandpipers centre in Southport, Merseyside, for anyone who feels that they need a break.
To enquire about respite care support, please visit revitalise.org.uk To show your support for Revitalise and help them to provide subsidised care breaks during the pandemic, please go to: revitalise.org.uk/donate
Tables blocking the road. Chairs over flat curbs. Gazebos built on accessible parking. The surge in street dining since lockdown eased in England has been great for businesses, but not so much for wheelchair users and people with mobility conditions, who report being unable to get around their home towns due to the new blockages.
Many of these people have been stuck indoors for up to a year shielding, and on their first taste of freedom are now being blocked from getting to the shops or pub. “All I want to do is go and meet my friends and have a pint,” said Katie Pennick, a campaigner and wheelchair user, recently on BBC Radio 4. It’s not your typical civil rights slogan but it characterises the crunch of so much disability politics: disabled people deserve the right to have a life like everyone else.
This sort of thoughtless planningwould be frustrating at any time, but it is all the more so as we come out of a period when disability inclusion was finally given attention. At the start of the first lockdown, I reported that society was opening up to millions of disabled and chronically ill people as “virtual living” became the norm – from Zoom job interviews and streamed gigs and theatre to NHS phone appointments. But just as it took the non-disabled public to experience a dose of what disabled people have for years before access was improved, the fear is that any gains made during the pandemic will be discarded now that the wider public no longer need them themselves.
Take work for example. The shift to working at home over the past year brought new opportunities to those previously excluded from the workforce. As one woman with agoraphobia told me: “Lockdown has opened my world” – it allowed her to get a job from her front room. But as ministers and some employers push for a return to the office, many disabled workers are worried their hard-won progress will go backwards.A research scientist with endometriosis and IBS told me her employer has already stopped letting her work from home full-time, even though her job can be done remotely. “The office is ‘going back to normal’ and they don’t want us at home even though I can do a better job [here],” she said.Advertisement
The disability employment gap in the UK is vast – in 2020, the employment rate for disabled people was just 53.7%, compared with 82% for non-disabled people – and has been largely stagnant for years. Retaining flexible working is one way to address it.Such working patterns will help many others beyond disabled workers, from working parents to carers of elderly parents. Rather than being reduced in coming months, these schemes should be extended; a survey by the Chartered Institute of Personnel and Development found that almost half of workers currently don’t have flexible working arrangements such as flexitime, part-time hours or job shares.
Or look at socialising. The Zoom pub quiz became a cliche of lockdown, but what many of us did informally with friends was also replicated by companies, with art exhibitions streaming online or bars running virtual club nights. As venues open back up, I’m hearing from scores of disabled people losing out: from the parishioner whose church’s Zoom coffee morning allowed her to speak to people from her congregation for the first time in 15 years but which has now been stopped, to the person who “went” to an LGBTQ+ club night for the first time in their life when it went online during lockdown but has now watched it close.Covid made politicians look at our miserly benefits. But is £20 the best they can do?
Too often, cultural prejudice around disability assumes disabled people don’t need the same pleasures as everyone else, but health doesn’t change who you are. As one music-loving young housebound woman shared on Twitter: “Magically, over the past year I’ve seen countless live gigs and the thought of that being taken away is devastating.”
It doesn’t have to be this way. The Young Vic theatre in London announced in May that it plans to livestream all of its future productions, and gym companies say online workouts are here to stay, despite the popular return of “in person” classes. This doesn’t mean good access is about moving everything online: many disabled people want face-to-face settings, and besides, the surge in virtual experiences shouldn’t let businesses off the hook from adapting physical spaces which are still too often inaccessible. It simply means that it is right to keep the option, and that we need a culture in which companies think about disabled people – and our cash – as valuable.
As we rightly celebrate a return to normal, it should be remembered that, for disabled people, “normal” too often means being excluded from everyday life. Anyone who has felt the pang of missing nights with mates in the pub over the past year can empathise and support disabled people being restricted and isolated now. If you spot a restaurant blocking a wheelchair entrance, tweet a photo and tag your local council. If your employer is rolling back flexible working rights, talk to your union (or join one).
Attempts to gain access for disabled people are often met with pushback: it’s too much trouble, too expensive or simply unnecessary. And yet lockdown showed that sweeping changes can be made practically overnight with little fuss. The question is, if it was done for non-disabled people then, why not disabled people now?
With many thanks to Benefits And Work.
A DWP minister has indicated that face-to-face assessments will once again become the norm for both PIP and the WCA, though there will continue to be some telephone and video and assessments.
Justin Tomlinson, minister for disability, health and work told the commons work and pensions committee earlier this month that the pandemic had a severe effect on assessments, beginning with the closure of assessment centres.
First of all, we had to close down all our assessment centres. We then had to scale up telephone and video assessments, which we have never done before and, but for Covid, would have only been looking to discuss them in the Green Paper, let alone do a pilot. We then had to roll this out nationwide, literally in days. Again, we were using our stakeholders to let us know whether it was working. So far there has been very positive feedback.
A large number of assessors then moved on to COVID related jobs.
We also lost our health professionals. They all have at least two years’ health professional background so were at the front of the queue for the NHS’s rallying of secondment for Test and Trace, the vaccination roll-out and the immediate support in hospitals when there were the high levels of Covid infections in hospitals. That impacted massively on our capacity.
However, Tomlinson says that the system is now returning to normality, with WCA assessments resuming and face to face assessments returning for both the WCA and PIP.
As issues like this came up, we were able to respond and we are returning to normality on capacity issues. The WCA assessments will begin shortly and start to be scaled back up, as in face to face, and PIP will follow a few weeks later. However, we will keep video and telephone assessments. Through the health and disability Green Paper, we will explore to what extent and where they are best to be used.
It is not clear what proportion of assessments will continue to be by telephone and how many will be face to face, though we have yet to hear from anyone who has had a video assessment, so it is likely that these are likely to form a very small proportion of assessments at this stage.
Tetraplegic Steven Webb Is Elected Mayor Of Truro
One night when he was 18, Steven Webb dived into an open air swimming pool and his life changed forever. He hit his head on the bottom of the pool and was paralysed from the neck down. Now aged 48, he has been elected mayor of his home city. This is his journey from rock bottom to a place where he hopes to help others, as told to Miles Davis.
It was a Sunday night, 1 September 1991. I know it was 10:31 because I looked at my watch just before I dived into the pool.
It was an open air pool at Truro School. We were trespassing but we’d done it lots of times before.
I dived in off the top of the wall at the deep end like I had done many times. This time I hit the bottom with my head and a massive shock went through my body.
I tried to swim to the surface but I couldn’t move my arms. I couldn’t swim anywhere. I started to run out of breath and panicked then my friends swam down and pulled me to the surface.
‘I’ll never walk again’
I had broken my fifth cervical bone and it went right through my spinal cord. I spent 12 months in hospital.
I had to have a tube in my throat but it went badly and meant I couldn’t speak for several months.
I could only communicate through tapping – once for yes, twice for no.
I knew I was paralysed but still thought I would walk out of there.
Then the doctors came and said I would probably never walk again. They were telling me how complicated my life was going to become.
I came home to a different life. It ages you, I suppose, spiritually.
Much of my life I subconsciously had so much shame about my accident.
I was a dumb-ass who dived off a wall – I created my disability.
People said I was a hero and an inspiration but I felt like an idiot.
Now I realise what’s important is not what happens to you, it’s what you do with it.
People often say to me: “Imagine what you would have achieved if you hadn’t broken your neck.”
The question makes me laugh. I broke my neck and there is no alternative.
I wouldn’t spend any time thinking of a rose-tinted version of a better life.
‘Single and paralysed’
I met my then partner Emma in my late 20s and she moved in with her four-year-old daughter, Kember.
We were together for about 10 years and after we ended I met someone else.
But that went wrong suddenly, without warning, just before I turned 40.
I ended up sitting in a shop doorway with my wheelchair broken down and I realised my life was on a downward spiral.
There I was – single, no money and paralysed.
I was drinking every night to get to sleep because my brain just wouldn’t stop.
I could see where I was headed to and it wasn’t a place I wanted to go.
‘Then I started to read’
When I was at rock bottom I had a dark night of the soul and realised I was just existing.
People think being paralysed is the worst thing in life but there is nothing worse than having nothing to live for. Being asleep was the only time when I wasn’t suffering.
One night I started to read. I read ‘As a Man Thinketh’ by James Allen. Then instead of the drink I fell asleep reading.
I started meditating and saw my thoughts as transient, non-permanent and not me. That was the beginning of the end of my suffering.
I realised I needed to help others not to suffer and I started doing Facebook live sessions to help people to meditate.
‘That gave me the courage’
I have always had an interest in politics and had been a Liberal Democrat since I was a teenager.
In 2017 the party asked me if I would stand for Truro City Council and I got elected.
A few weeks ago I was unanimously voted in as mayor and that gave me the courage to say ‘I can do this.’
So here I am, mayor – it’s an incredible honour and an amazing opportunity.
I chose Kember as mayoress as she has always been hugely supportive of me and I’m very proud of her.
We’re very, very close and she took my surname about 10 years ago.
‘Rebuild together’
I’m trying to work out how to use my platform to help others to suffer less.
In a time where clinically vulnerable people have had to isolate for so long, I see it as an opportunity to make sure there are no groups left behind and we rebuild from the pandemic together.
There are so many people who have self-isolated and have hardly left their flats.
We’ve got to make sure everybody is included – that will help businesses, that will help Truro and that will reduce suffering.
It’s time we had a vision to keep the amazing heritage of cobbled streets and granite pavements but make it open to everybody.
I’m now able to contribute to that as the mayor. Boy, do I feel alive right now.
If you are looking for advice about disability, the BBC’s Action Line has a few pages to start you on your journey.
A man who appealed for Yorkshire voices to replace his American-sounding speech aid has spoken with his new accent.
Richie Cottingham, who has cerebral palsy, asked people to come forward to add their voices to his computer.
More than 35 people recorded their voices for the 26-year-old, who lives near Howden, East Yorkshire, with three chosen accents being blended together.
Speaking in his new accent, he said he had cried when he first used the voice, adding: “Now I am a Yorkshireman”.
Mr Cottingham launched his appeal earlier this year, hoping to find men in their early-20s with a subtle East Yorkshire accent.
He said he wanted to have his own voice after his speech aid “sounded American”. He said: “A generic voice is not my identity.”
Using his new accent, he added: “It feels awesome and I love it.
“Everyone has been really excited. I think it will take people time to get used to hearing the new me.”
‘Happy tears’
Jake Thompson, who recorded his voice for Mr Cottingham to consider, said he wanted to help out because it would be “a lovely thing to do”.
He added: “It’s something we all take for granted to speak and all have our own accents and voices.”
Mr Cottingham thanked the dozens of people who came forward to volunteer their voices before using a mix of three people to create his own, unique accent.
“It made me cry on Tuesday when I heard it for the first time. Many happy tears,” he added.
Gene Therapy Is A Game Changer For SMA
Baby Arthur is just five months old. He has no way of knowing the treatment he is receiving in his right arm is the world’s most costly medicine.
He has a devastating progressive disorder that causes loss of muscle control – but has become one of the first patients to be treated on the NHS with Zolgensma, a gene therapy.
Around 40 children are born with the most severe form of Spinal Muscular Atrophy (SMA) every year.
Untreated, they rarely live beyond two.
Zolgensma, manufactured by Novartis Gene Therapies, has a list price of £1.795m.
But the NHS has negotiated a confidential discount which means dozens of infants can be treated each year.
Arthur, from south-east London, finds it difficult to move his arms and legs and cannot lift his head, so some permanent damage has already been done.
The hope is the one-off treatment will stabilise his condition and prevent further deterioration.
His father, Reece Morgan, says there have been many ups and downs.
“Our hope is that he can have the best possible life in terms of his movement,” he says. “We don’t know, but we’re just going to try as best as we can to give him everything he possibly needs.”
So how does Zolgensma work ?
The drug contains a healthy copy of a missing or faulty gene called SMN1.
This is inserted into a harmless virus.
In the body, the virus delivers the replacement gene into the nucleus of motor neuron cells.
This is essential to prevent the cells from gradually dying.
The now healthy motor neuron cells start producing the missing SMN protein which is vital for muscle function.
‘Hugely important step’
Evelina Children’s Hospital, where Arthur is being treated, is one of a handful of centres which will be offering Zolgensma.
Dr Elizabeth Wraige, a consultant paediatric neurologist at the hospital, explains that this treatment can really alter the outlook for these children.
“Twenty years ago a baby born with SMA would have a very shortened life expectancy, ” she tells the BBC.
“Now, we have the potential to enable children to acquire motor skills such as rolling and sitting and even standing walking, that would have been impossible without treatment for SMA.”
NHS England chief executive Sir Simon Stevens says it is “fantastic news that this revolutionary treatment is now available for babies and children like Arthur on the NHS”.
He adds that Zolgensma is among the “life-changing therapies” being “routinely” used by the health service.
Sally-Anne Tsangarides, general manager at Novartis Gene Therapies in the UK, calls it a “hugely important step for babies in England”.
“We thank all those who have been involved in the landmark agreement that has made it possible,” she says.
Despite the high list price, both NICE and the Scottish Medicines Consortium recommended the NHS fund the treatment.
Trials have shown it produces lasting benefits, which endure at least five years, and perhaps will prove to be permanent.
The only other treatment for SMA involves costly spinal infusions which need to be given at least three times a year.
‘It saved her life’
Tora, from south-west London, first displayed symptoms when she was around three months old – struggling to lift her head when lying on her tummy.
By the time Tora began treatment with Zolgensma in the US when she was 10 months old, her mum, Taisya Usova, says she was floppy and didn’t have any mobility.
“She couldn’t do the basic things. She couldn’t reach for a toy, which was five centimetres away. We couldn’t leave her alone, Even on the sofa, where she was all surrounded by cushions and pillows because everything was too dangerous,” she says. “We couldn’t relax for a second, and she couldn’t enjoy her life.”
Now aged two years and eight months, Tora is an inquisitive little girl who speaks three languages and can walk a little with the help of her parents.
“If she’s just sitting on the sofa you would never notice that something is not quite right,” Taisya explains.
“It saved her life, and basically she now has a chance to enjoy her life and to do things that are so basic and simple for any other child but for her it would be absolutely impossible. To go to the playground, to go on a swing, or to hold and read a book.”
Rajdeep Patgiri, Tora’s Dad, says the family now feels positive.
“Before we were afraid of what the next day would bring,” he says. “We were always afraid that she would lose some skills – deteriorate in her swallowing, in her breathing. Now we look forward with optimism that tomorrow something good will happen.”
How common is SMA?
Around one in 50 people carry the faulty gene for SMA, and the condition affects approximately one in every 10,000 births.
It is the most common genetic cause of death in childhood.
SMA is a condition where the clock is ticking from the moment a baby is born. Every week that passes where they are untreated, risks further damage to the nerve fibres and can make the difference between a child being able to walk or run or sit unaided.
It is usually spotted when babies are around three months old and they start failing to meet the usual milestones like kicking their legs or holding their heads up.
But by then, permanent damage will have been done to motor neuron cells.
For families who have already had an affected child, prenatal screening is offered.
This has enabled babies to be given Zolgensma within a few days of birth, long before symptoms appear.
This can mean their muscles develop normally and they suffer no movement problems.
UK must ‘catch up’
Patient groups and doctors treating SMA want the condition to be added to the newborn screening programme. All babies are given a heel prick blood test which can pick up nine conditions like sickle cell disease and cystic fibrosis.
“We need newborn screening for SMA to be introduced in the UK so that our children have this opportunity for their futures,” charity SMA UK tells the BBC.
“The earlier Zolgensma is given for SMA the better, with pre-symptomatic treatment shown to give the very best possible outcomes. Early diagnosis and treatment is vital.”
Nickie Aiken, Conservative MP for the Cities of London and Westminster says the UK is lagging behind many of our European neighbours and the world.
“It’s a disgrace. Our newborn screening programme needs to expand and catch up urgently with the likes of Poland, Hungary and America so that we can identify diseases early and our children get the treatment they need. We have the means to test for these conditions and we have the treatments – by not screening for them we are doing wrong by our children, and they risk becoming the sick children of Europe.”
Fewer Disability Assessments, More Recordings, More Free Advocacy On The Way, Minister Claims
With many thanks to Benefits And Work.
A government minister has claimed that in the future there will be fewer and shorter assessments for disability benefits, more access to specialist assessors, audio recording of all assessments, more mandatory reconsideration success for claimants and more access to free advocacy services.
DWP minister Justin Tomlinson, gave evidence to the Commons Work and Pensions committee earlier this month.
Fewer assessments
He told them that “as part of the health and disability Green Paper, we want to explore the principle of removing unnecessary assessments.”
One way of doing this, he explained, would be to ensure that where a claimant gets an award from a tribunal, the length of their award should be extended to take into account the fact that the tribunal had access to recent evidence. At present, it can take so long to get to a hearing that claimants can find themselves filling out a review form shortly after a tribunal victory.
In addition, Tomlinson talked about ‘triaging’ as a way of reducing the number of full assessments that some claimants have to endure.
There is also the principle of triaging. Pre-Covid, if I had received your written evidence at the beginning, then I could be 95% certain of what award I am going to give you or what level of support, but because I am missing 5% the only option to me was to trigger a full assessment. During Covid, because we had such limited capacity, we then started doing triaging where we said, “We know 95%, so let us now have a telephone assessment, or even just a telephone conversation, to get that final 5%.” In my preconsultation, triaging is very popular with stakeholders. It is also very popular with assessors, who say, “There is nothing more soul destroying than knowing I have to ask 55 questions, which I already know the answers to, to get to the very last question at the end of this one-hour assessment.”
Telephone and video assessments to stay
Tomlinson said that telephone and video assessment are likely to be here to stay.
We then rolled forward the telephone and video assessments. We are very encouraged by how they have been received by claimants and we will be exploring further in the Green Paper how they can become a permanent part of the mix of assessment options. Certainly, they will continue as we return to normality.
Specialist assessors
He claimed that one advantage of being able to have telephone and video assessments as well as face-to-face is that it would be possible to have specialist assessors carry out the assessment for people with some conditions:
“. . . by having a menu of telephone and video assessments, we can explore, for the first time, having more specialist assessors. If you are not physically restricted to your nearby physical assessment centre, then we may be able to explore, for some conditions, a more specialist type of assessment.”
Mandatory reconsideration successes
The minister claimed that phone calls to claimants at the mandatory reconsideration stage had led to an increase in the number of decisions being changed in favour of claimants from 21% up to 44%.
We have also brought in holistic decision making at the monetary consideration stage, where for the first time—and again this goes to the core of trust—we will phone a claimant and say, “Tell us in your own words why you think we have made the wrong decision.” Sometimes that is enough, and sometimes that identifies what will ultimately be the additional evidence that is needed and we then help them gather that. To put this into context, making these changes about six months before Covid, 21% of decisions were overturned at appeal at the monetary consideration stage. That had moved up to around 44%. With Covid—we are not in normal circumstances—as we return to normality, I expect that to go higher yet.
Free advocacy
In spite of the massive cuts to support for the voluntary sector and to legal aid, Tomlinson claims to be in favour of more access to free advocacy. He points out that some people already have friends, family or charities that can advocate for them, but goes on to say:
There is also a “other” cohort of people who may not have advocacy support. It could be somebody with health or disability but, for example, if you are an ex-offender, if you are a care leaver into a new community, you do not necessarily have established advocate support. Can we evolve the help-to-claim scheme? We currently provide about £42 million a year to Citizens Advice as a trusted independent agency. Can we evolve that scheme so that they can provide that advocacy support? That can help in the application processes, explaining the system.
Recording assessments
The idea that all assessments should be recorded as a matter of course appears to be gaining ground, if the minister is to be believed.
We are committed to providing audio recording, as a given. At the moment you can get it but you have to bring your own equipment and provide a copy for somebody else. We also had a stakeholder request for video recording. We piloted that and it transpired that almost nobody wanted it. It is likely that it will be audio. We have also, because of the telephone and video assessments, started to do some audio recording on that. Our plan is that audio recording will become a given because, you are absolutely right, when you are reviewing a decision, to have that to go back to is helpful for claimants and the people doing the review
Too good to be true
If everything the minister is promising comes to pass then it should lead to at least a small level of improvement for claimants of disability benefits.
But we have heard talk like this before. So, we suspect many claimants will wait to see what the green paper says and, much more importantly, what the government actually does, before they start throwing their hats in the air.
Model’s Call For Bowel Illnesses To Be NHS Priority
A woman who nearly died when her Crohn’s disease was misdiagnosed as anorexia is calling for bowel illnesses to be made an NHS priority as cases rise.
Natalie-Amber Freegard, 29, said her GP was convinced her weight loss was due to an eating disorder until she collapsed in 2017.
Her parents were told to prepare for the worst as she went blind, had sepsis and kidney failure.
NHS England has been asked to comment.
A recent report by IBD UK suggests a lack of resources and late diagnosis is putting patients at risk and costing the NHS millions.
Ms Freegard, from Swindon, said: “If doctors even suspect it, they need to give us that colonoscopy straight away because it can be the difference between life and death.
“The fact that they’re still managing to misdiagnose people is not okay.”
The model said she had requested to be tested for Crohn’s as her cousin also has the disease.
It was only after being admitted to Great Western Hospital in Swindon in 2017 and undergoing two emergency surgeries in two days that she was diagnosed.
“My parents were told I wasn’t going to make it,” she recalled.
She ended up with a stoma, which was removed a year later.
Now she is joining calls from 17 national medical associations for faster diagnosis of the chronic illness.
Professor Bhupinder Sandhu, a consultant paediatrician and gastroenterologist at Bristol Children’s Hospital, told the BBC cases of inflammatory bowel disease in children have tripled in 20 years in the South West.
She said: “It’s a big burden for young people particularly and if they’re not caught early they can suffer.”
Half a million people in Britain live with Crohn’s disease or ulcerative colitis, life-long autoimmune diseases which affect the colon.
The national research from IBD UK, a coalition of leading health specialists in Crohn’s and colitis care, showed many patients are waiting more than a year for their diagnosis.
Ms Freegard now raises awareness of people living with IBD, modelling her scars with pride with an agency celebrating people with visible differences and on her own Instagram page.
“It’s nothing to be ashamed of”, she said.
“A lot of young people are so embarrassed because it’s poo.
“But we all poo, it shouldn’t be a taboo subject. We need to break that stigma of thinking it’s something to be embarrassed about.”
Sarah Sleet, CEO at Crohn’s and Colitis UK and chairwoman of IBD UK, said: “Crohn’s and colitis are serious conditions which aren’t taken seriously.
“They cost the NHS as much as cancer and heart disease for each patient, and can be as devastating, but they lag behind in the recognition and support needed to improve lives.”
Rising case numbers
Prof Sandhu, who is a co-founder of the British Society of Paediatric Gastroenterology, Hepatology and Nutrition, said more resources are urgently needed to keep up with the rising case numbers.
She said: “It needs to be centrally funded so there’s allocated money.
“It’s an increasing problem and there’s no allowance made for that so centres are having to cope with the extra numbers without any extra funding.”
Ms Freegard said the situation had been exacerbated by the coronavirus pandemic.
Many IBD patients take immunosuppressant medication and have had to shield for the past 18 months.
“Flare-ups can be (brought on) through stress and we’re being told as IBD patients we can’t do this, we can’t do that. The pandemic has made it a lot worse,” she said.
“We have two nurses and one in training for the whole of however many people in Wiltshire have IBD. It’s just not enough.”
Black, Asian and disabled tenants are disproportionately likely to face discrimination looking for a home, and to end up inhabiting shoddy, unsafe and unsuitable accommodation, according to the housing charity Shelter.
Its survey of 13,000 people’s housing experiences suggests that overall 17.5 million people are affected by what the charity calls the “housing emergency” – meaning they live in housing that is substandard or hazardous, unaffordable, or unfit for their needs.
High housing costs – and the failure of housing allowances to keep pace with rents – meant that for a fifth of people housing was a source of stress, while 14% admitted they cut back on food or fuel to prioritise paying the rent or mortgage.
Shelter said the pandemic had shone a stark light on the state of Britain’s housing, with poverty and poor and overcrowded accommodation recognised as a key factor in many areas where Covid infections and deaths were highest.https://interactive.guim.co.uk/charts/embed/may/2021-05-25T16:54:19/embed.html
Structural racism and discrimination mean black, Asian, and disabled people, gay people, people on low incomes and single parents are overwhelmingly more likely to experience poor and inadequate housing, the charity said.
As well as being more likely to be on low incomes, racial minorities were more likely to be offered poorer homes or “steered” into certain neighbourhoods, Shelter said. So-called “No DSS” discrimination and the ineligibility of some migrant workers for housing support further diminished the housing chances of marginalised groups.
Shelter’s survey found:
- Black and Asian people were almost five times more likely to experience discrimination when looking for a safe, secure and affordable home than white people (14% versus 3%). More than one in 10 disabled people, and 7% of those earning under £20,000 a year, found it hard to find a safe and secure home.
- Twelve per cent of black people and 14% of Asian people reported safety hazards in their homes, such as faulty wiring and fire risks – compared with 6% of white people. Fourteen per cent of black people and 16% of Asian people reported living in a property with significant defects with walls or roof, compared with 8% of white people.
- Overall, 56% of black people were affected by the housing emergency, compared with 49% of Asian people and 33% of white people. More than half (54%) of disabled people were affected (compared with 30% of non-disabled people) and 58% of single parents.
Polly Neate, the chief executive of Shelter, said: “Decades of neglect have left Britain’s housing system on its knees. A safe home is everything, yet millions don’t have one. Lives are being ruined by benefit cuts, blatant discrimination and the total failure to build social homes.”Advertisementhttps://d4a80180f272b5ac94a9163294a40bf0.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
Despite big changes in the housing market in recent decades – 11 million people now rent in the private rented sector, twice as many as 20 years ago – housing laws have changed little since the 1980s, trapping many in a series of short-term private lets and creating a “permanent state of stress and instability” for many tenants, Shelter said.
Not only were an estimated 1.5 million people bringing up children in the private rented sector – twice as many as 15 years ago – but hundreds of thousands of older people were likely to be renting privately in years to come, “facing unaffordable rent increases at a time when most owner-occupiers are starting to be mortgage-free”.
Shelter is calling for 90,000 social homes to be built every year to stem the crisis of affordability and to cut the estimated 1 million people on council waiting lists.
A Ministry of Housing, Communities and Local Government spokesperson said: “We’re providing over £750m this year alone to tackle homelessness and rough sleeping and are investing over £12bn in affordable housing.”
Families of patients held in the Winterbourne View Hospital have written to the prime minister demanding better care for adults with learning disabilities.
The abuse of patients at the assessment and treatment unit near Hambrook, Bristol, was exposed by BBC Panorama 10 years ago this month.
The families said “countless” others have suffered “trauma” in the system.
Mencap said the lack of change in the last decade was “deplorable”.
Eleven of the hospital’s staff were prosecuted, but seven relatives of people who were housed there claim abuse in similar facilities continues.
Research by Mencap and the Challenging Behaviour Foundation (CBF) shows 2,040 people with autism or learning disabilities are being held in assessment and treatment units.
The units are meant for short-term treatment but patients are held for an average of more than five-and-a-half years.
The charities said 355 people were in assessment and treatment units for more than 10 years.
In their letter to Boris Johnson, the families said: “Not even the exposure in the media of their torture has been sufficient motivation for government and the NHS to change a broken system.”
The families said they want to see the number of units cut and money ploughed into social services and residential care to allow people to live semi-independently.
“For the sake of our family members, and all others facing this system today, the change must happen,” they said.
Ann Earley, mother to Simon, now 47, who was at the hospital between 2010 and 2011, said: “The dangers have been exposed, the failures noted, the appalling damage catalogued, but still decision-makers and commissioners condemn our loved ones to a life of misery.”
Edel Harris, Mencap’s chief executive, said: “For people and their families to have been through such horrors and for so little to have changed is deplorable.
“We cannot tolerate a situation where more people are locked up simply because they cannot access appropriate support in their community.”
Vivien Cooper OBE, chief executive of the CBF, said: “Think what can be achieved in 10 years – then consider how little has changed for so many people with learning disabilities and autistic people.”
The Department for Health and Social Care has been approached for comment.
Stephen Hawking’s Papers To Be Saved For The Nation
Prof Stephen Hawking’s scientific papers and personal possessions are to be saved for the nation.
The objects include childhood letters, scripts from his TV appearances and Prof Hawking’s ground-breaking research into black holes.
The 10,000-page archive will be kept in perpetuity at Cambridge University library.
His office will be reconstructed in the Science Museum next year and selected highlights will go on display.
Prof Hawking’s son, Tim, said that the family was delighted that his body of work and memories of his life were being safeguarded for future generations.
“Our father would be really pleased,” he said. “It was really important during his lifetime that science be opened up to the widest possible number of people and be democratized and not be the preserve of the elite few.”
The early years
The collection encompasses Prof Hawking’s personal and professional life. Particularly touching is a letter by Hawking to his father on family-headed notepaper that was written when the future professor was six years old.
In child-like lettering, with several crossings out, the young Stephen tells his father a story about pirates loading treasure. He signs off with hugs and kisses.
Tim Hawking saw the note for the first time only recently.
“I would write my dad letters along those lines,” he reminisces fondly. “It was quite nice to see it being passed along the generations and appreciating that he had a loving relationship with his dad, as I did when I was (that) age. It shows a tenderness in his relationship with his father which I hadn’t fully understood until now.”
Prof Hawking was a prolific letter writer. He communicated with popes, US presidents and Nobel laureates.
The letters, however, show his handwriting deteriorating after a diagnosis of motor neurone disease in 1963. Its progression is captured by the increasingly misshapen letters and inkblots on the page.
TV scripts
Prof Hawking made an immense contribution to science. But his status as the world’s most famous scientist was partly because of his appearances on popular TV programmes such as Star Trek and Big Bang Theory. Among the archive is Hawking’s personal script from his first appearance on the Simpsons, in 1999.
In the episode, Prof Hawking and Homer Simpson go to Moe’s Tavern for a drink. Prof Hawking becomes intrigued by Homer’s theory of a “doughnut-shaped Universe” and wonders if he can steal it. Homer imitates him, in an attempt to make him pay the bar bill and gets punched by a boxing glove on a spring, concealed in Prof Hawking’s wheelchair.
Dr Jessica Gardner, who is Cambridge University’s director of library services said the scripts reflect an important aspect of Prof Hawking’s contribution to the communication of science.
“He had an enormous sense of humour. He was willing to be in the Simpsons, to let fun be taken, if what that did was to help communicate science and help people get excited about it,” she explained.
To have these scripts shows the celebrity part of his life, but also that he was determined to break down the barriers to science.”
Scientific papers
The star attraction for historians will be Prof Hawking’s research papers and correspondence with his collaborators. They are a record of how his unique mind worked, cataloguing corrections and changes in his ideas over time.
Prof Paul Shellard, who worked with him at Cambridge University, said that the collection of papers had a profound influence on our understanding of space-time and the Universe.
“It’s a wonderful thing that historians of science can get an idea of how Stephen thought about these problems,” Prof Shellard explained. “He saw further than others and I hope that (his) intuition and way of thinking will come through in the archive and be remembered in perpetuity.”
The collection contains a glowing letter, from Prof Hawking’s PhD supervisor, to the 22-year-old budding researcher’s dad, Frank.
“It is such a pleasure to supervise him,” writes Prof Denis Sciama, a noted physicist at the time who is credited as a father of modern cosmology. “Indeed, I’m at a stage… that I am learning from him”.
Accompanying a seminal 1974 scientific paper, on how black holes are not completely black, is a cover letter to the editor of one of the world’s leading scientific journals, Nature. In it we see a confident, if not downright cocky young man, in little doubt about the importance of his research paper.
Hawking’s office
The contents of Prof Hawking’s office, including his custom-built wheelchairs, communications equipment, and office furniture, will be transferred to the Science Museum. According to the museum’s director, Sir Ian Blatchford, although rooms of decorative or artistic interest are often kept for posterity, spaces relevant to scientific discovery are rarely saved.
“By preserving Hawking’s office, future generations will be able to delve deep into the world of a leading theoretical physicist who defied the laws of medicine to rewrite the laws of physics and touch the heart of millions,” Sir Ian said.
“These remarkable items might even inspire the next Hawking to wonder about the world around us.”
The frank, fizzy comedy Special, which has just landed on Netflix, is a tale of two Ryans. There is Ryan Hayes, the main character, a gay intern with cerebral palsy who lives in Los Angeles with his mollycoddling mother. Then there is Ryan O’Connell, the show’s star and creator, who is also a gay Angelino with cerebral palsy. But there the similarities end. Moments from O’Connell’s life resurface on screen, such as the time he was hit by a car then pretended to his new college friends that his limp was a result of the accident. (Season one ends with Ryan coming out as disabled.) But whereas Ryan is gauche and apologetic, his 34-year-old creator is almost intimidatingly sassy and self-possessed.
Talking over Zoom from his home, O’Connell speaks at the speed, and in the style, of Twitter. Anyone who read the tell-all blogs he wrote in his 20s, or his memoir I’m Special: And Other Lies We Tell Ourselves (from which Special is adapted), will recognise the exuberant voice. Song lyrics and invisible exclamation marks litter his conversation, while acronyms and punctuation are verbalised: “LOL”, “Dot-dot-dot.” He’s like the internet personified, but with none of the spite.Advertisementhttps://641e2f37e98ed72d1fe64587b2742656.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
“Ryan still lives with his mum, has no friends and no boyfriend,” O’Connell explains. “He has Norman-Bates-from-Psycho vibes. And that was not my experience. I had a lot of friends. I moved out to go to college when I was 18. I had sex at 17. Not to brag!” Despite these disavowals, he concedes to some kinship. “Like Ryan, I have struggled with feeling like I’m enough … We were both born in an ableist hellhole, but he is more undercooked than I ever was. I never felt I had the luxury to be socially awk. My role was to disarm anyone I encountered because they were going to be so confused by …” He gestures to himself. “This presentation. It became my job to put them at ease. Ryan worries about whether people around him are comfortable that he never asks, ‘Am I comfortable?’ That’s an epiphany I’ve had.”
Special provides numerous insights into the daily slights doled out by the able-bodied world, such as the gym bunny who congratulates Ryan merely for exercising. “Oh my God, the gym is a nightmare,” gasps O’Connell. “I’m like a celebrity there. ‘Go you! Look at you, gettin’ it!’ I’m like, ‘Oh-kaaay.’” Elsewhere, Ryan finds himself with an able-bodied partner who has a disability fetish. “I have not personally been fetishised,” O’Connell says. Then, with a poker face: “I’m still looking for the right one.”
Upgraded to half-hour episodes from the first season’s 15-minute nibbles, the new series is far richer dramatically. There is space now not only for Ryan to pursue his needs but for his friend Kim (Punam Patel), a plus-size woman of colour, and his timid mother Karen (Jessica Hecht), to find fulfilment. “It’s the three of them saying, ‘I wanna be the girl with the most cake.’” He is also proud to have kept his promise that Special would become “gayer and gimpier”. Ryan previously rejected a deaf suitor on a blind date, but now he embraces the disabled and neuro-diverse community.
It’s refreshing to see authentic casting in Special, especially after the controversy over Sia hiring a neuro-typical actor to play a person with autism in her film Music. “Ableism is sosystemic and ingrained in our culture,” says O’Connell. “I don’t think Hollywood is like Mr Burns cackling behind a desk, going ‘Keep those disabled people out!’ It’s more that no one considers disabled people in general, which is very dark and very sad. We’re usually only there for ‘inspiration porn’ or to serve an able-bodied character’s personal growth.”
How can that change? “More disabled creators. We need to stop putting disabled characters in the hands of able-bodied people because that doesn’t give us money or opportunities, and they don’t fully get what it’s like.”
He is no less militant about LGBT casting. “People freak out when you talk about authenticity,” he says, then slips into a parody of shrill straight-splaining: “‘It’s called acting! It’s literally their job!’” This is followed by a gentle wave of the hand, as though placating a petulant child. “‘Honey, baby, sweetie, I understand what acting is. I’m Emmy-nominated!’ But the reality is that if you’re a straight actor, you already have more opportunities than an out gay actor. Why would I take another role from them and give it to someone straight?” Not only are the gay characters in Special played by gay actors, but several of the straight ones are, too. “Can you believe it? It’s possible!”
An explicit approach to gay sex was a deal-breaker from the moment O’Connell started pitching Special. Backed by its executive producer, the Big Bang Theory star Jim Parsons, the show has never shied away from what gay men do in bed, and the new series gets even more down and dirty. One sex scene in particular serves a radical function: Ryan behaves cruelly to his partner, and is cast as the shamer rather than the shamed. “I never wanted him to be this amazing virtuous figure. As marginalised people, we’re allowed to exist within very narrow slots, and I always like to challenge that. I set out to make the viewer feel annoyed at this gay guy with cerebral palsy. He doesn’t have to be perfect so that you can feel good about yourself. He doesn’t need to be your inspiration, honey. He can be a source of your ire.”Advertisement
For all his elation over Special, he admits to feeling “disappointed” when Netflix told him the second season would be its last, but he feels ready to let it go. “This show has given me so much, but it’s never been easy. It has always been limping its way along, holding on for one more day by Wilson Phillips.” O’Connell, on the other hand, is speeding ahead. HBO Max is mulling over Accessible, a pilot he has written set at a disabled boarding school, while his first novel, Just By Looking At Him, is published next year. “The lead is a gay disabled television writer,” he says with a disarming grin. “Whaaat? Who’s that?”
If able-bodied people are permitted to plough the same furrow, why can’t he? “Sofia Coppola has wealthy malaise cornered. Sally Rooney writes the same book – they’re good but I’m sorry! – and no one’s like, ‘This again?’ As soon as the characters are marginalised people, they’re only allowed to exist thiiis much.” Perhaps there will come a time when he isn’t writing about cerebral palsy. “But as a writer, I’m naturally attracted to things that aren’t discussed or understood, or which are stigmatised. Unfortunately, disability checks all three boxes. It’s a giant well of interesting stories that we’ve never seen before.” Another big grin. “Why would I throw that out of bed?”
Special season two is on Netflix now.
With many thanks to Benefits And Work.
The DWP have failed to give an answer to any Freedom of Information Act requests relating to the LEAP review made by Benefits and Work, fuelling the suspicion that they have something to hide.
LEAP is a review of 1.6 million PIP claims set up because the DWP had been interpreting the law incorrectly. So far, the review is on course to pay out to only around 7,000 claimants in relation to one case, known as MH, when the original DWP estimate was that 164,000 would benefit.
Algorithms
As reported earlier this month, Benefits and Work asked the DWP for details of any algorithms being used to carry out the LEAP review.
The DWP’s response was to simply direct us to an unconnected parliamentary answer which denied that any algorithms were ever used by the department, but they did admit to using automated ‘business rules’.
We have now made a separate request for details of the business rules used in connection with MH and LEAP, because to us they sound very similar to algorithms.
Letters
In its most recent progress report the DWP claimed that 890,000 cases had been cleared against MH. We made a request to ask how many of those claimants had received a letter from the DWP giving them the results of their review.
The DWP once again pointed us to a parliamentary answer which appeared to say that all of these claimants had received a decision letter. But the answer also included a link to a previous answer which stated that:
“Through continuous monitoring of the exercise, we have been identifying claimants most likely to benefit, so that we can focus on paying these claimants backdated payments more quickly. We are writing to other claimants, explaining how we apply the Upper Tribunal decisions and letting them know they can get in touch with us if they think they are affected, and we will review their claim.”
This has left us uncertain how many of the 890,000 claimants have been written to with the result of a review and how many have simply been written to and told they can ask for a review. This is particularly the case as fewer than 4,000 of the 890,000 have actually been given a payment.
We asked for a review of the DWP’s answer but it remained unchanged. The matter is now with the Information Commissioner’s Office.
Expert advice
We also made a Freedom of Information request for copies of the expert advice and small scale case study which had been used by the DWP to come up with the original estimate that 164,000 claimants would be eligible for a back-payment in connection with MH.
But the DWP refused our request on the grounds that it would take one person more than 3.5 days to collect this information because it is “contained across multiple systems, from a significant time
past, and would require searching through a significant number of archived documents” and that it was therefore above the cost limit.
We don’t believe this to be true. The estimate was created for a document presented to MPs and ministers to persuade them of a need to change the law.
It isn’t credible to argue that the information for the report was never collected and collated but instead is scattered far and wide across the DWP.
We have asked for the decision to be reviewed and will, once again, take the case to the ICO if necessary.
What’s the secret?
There is a massive difference between the 164,000 people the DWP estimated would receive between £3,000 and £12,000 each in back-payments and the 7,000 people the DWP are on course to actually make a payment to.
The DWP have not addressed this issue in any way in their reports on the LEAP review. They very much do not want attention drawing to it.
Which is why we will carry on asking questions until we get some answers.
Covid: Deaf Campaigner Calls For Clear Mask Research
More research needs to be done into effective clear masks to help deaf people communicate during the pandemic, according to a campaigner.
Melissa Julings, 35, from Norwich, said the wearing of masks had left deaf people feeling “isolated” and “lost” throughout the past year.
The government is due to review face coverings before 21 June, but Ms Julings said more work was needed to find better clear masks.
A spokesman for the Department of Health and Social Care said: “Transparent face coverings may be worn by those who communicate through lip-reading or facial expressions.
“However, their effectiveness is not supported by evidence so the government does not recommend their use by the wider public at this time.”
Nadia Whittome MP: I’m Taking Time Off With PTSD
A Labour MP has said she has decided to take a “step back” from her work because she is suffering from post-traumatic stress disorder (PTSD).
Nadia Whittome said she has been advised by her doctor to take several weeks off for her health to improve.
The Nottingham East MP said the decision was “incredibly difficult” and one she feels “very sad” about.
Labour leader Sir Keir Starmer wished Ms Whittome “all the best” in her recovery and praised her “bravery”.
‘Creating greater acceptance’
In a statement, Ms Whittome, 24, said she has been battling “some persistent health issues” over recent months.
“Until now, I have been attempting to manage them alongside continuing with my full-time work as an MP,” she said.
“Unfortunately, it has become clear that this is not feasible and I have been advised by my doctor that I need to take several weeks off in order for my health to improve.
“I feel it is important for me to be honest that it is mental ill-health I am suffering from – specifically post-traumatic stress disorder (PTSD).
“Through being open about my own mental health struggle, I hope that others will also feel able to talk about theirs, and that I can play a small role in creating greater acceptance and facilitating healthier discussions around this issue.”
What is PTSD?
Post-traumatic stress disorder (PTSD) is described as an anxiety disorder caused by very stressful, frightening or distressing events.
Someone with PTSD often relives the traumatic event and may have problems sleeping and find concentrating difficult.
PTSD can develop straight after someone experiences a disturbing event, or it can occur weeks, months or years later.
It is thought to affect about one in every three people who have a traumatic experience.
Source: NHS
Ms Whittome said her constituents should continue to contact her office as normal.
“My decision to take time off has been an incredibly difficult one to make. Representing Nottingham East is the greatest honour of my life and I am very sad to have to step back for a little while,” she said.
Ms Whittome became the House of Commons’ youngest MP when she topped the poll at the snap general election in 2019.
During the coronavirus pandemic, she took on a part-time job at a care home but said she was “effectively sacked” after speaking out about personal protective equipment (PPE).
Earlier this month Ms Whittome spoke about a “mental health crisis” in a column published by Nottingham magazine LeftLion.
She said the pandemic has made it worse and that young people have been most affected.
Algae Proteins Partially Restore Man’s Sight
The vision of a completely blind man has been partially restored using light-sensing proteins first found in algae.
The man was treated with a type of therapy called optogenetics, which uses the proteins to control cells at the back of his eye.
He first knew it was working when he realised he could see the painted stripes of a pedestrian crossing.
He can now grab and count objects on a table, Nature Medicine reports.
The man, whose identity has not been revealed, lives in Brittany, France, and was treated in Paris.
He was diagnosed with retinitis pigmentosa – which leads to the death of light-sensing cells on the surface of the retina – 40 years ago.
It affects more than two million people worldwide, and although complete blindness is rare, the man has had no vision for the past two decades.
He was treated with optogenetics – a field new to medicine, but one that has long been a staple of fundamental neuroscience.
It uses light to control precisely the activity of brain cells and was used by the scientists to restore the ability of one of his eyes to detect light.
The technique is based on proteins, produced in algae, called channelrhodopsins, which change their behaviour in response to light. The microbes use them to move towards the light.
The first step in the treatment was gene therapy. The genetic instructions for making the rhodopsins were taken from algae and given to cells in the deep surviving layers of the retina at the back of his eye.
Now when they were hit with light they would send an electrical signal to the brain.
However, they would respond only to amber light, so the patient wore a pair of goggles with a video camera on the front and a projector on the back, to capture what was happening in the real world and project a version in the right wavelength onto the back of the eye.
It took months for high enough levels of the rhodopsins to build up in the eye and for the brain essentially to learn a new language to be able to see again.
‘We were all excited’
The first sign it was working was when the patient was out on a walk and suddenly, the stripes of a pedestrian crossing appeared.
Dr José-Alain Sahel, from the Institute of Vision, in Paris, said: “This patient initially was a bit frustrated because it took a long time between the injection and the time he started to see something.
“But when he started to report spontaneously he was able to see the white stripes to come across the street you can imagine he was very excited. We were all excited.”
The man does not have perfect sight, but the difference between no vision and even limited vision can be life-changing.
Prof Botond Roska, from the University of Basel, said: “The findings provide proof-of-concept that using optogenetic therapy to partially restore vision is possible.”
There are several other approaches being used to try to restore sight.
One includes repairing the genetic defects that cause disease, but retinitis pigmentosa can be down to mutations in more than 71 different genes, making that more of a challenge.
Another involves connecting a camera to electrodes implanted in the back of the eye.
Optogenetics itself is also being researched in conditions such as Parkinson’s disease, and to see whether it can enhance recovery from a stroke.
James Bainbridge, a professor of retinal studies at the UK’s UCL, said the study was high-quality, but on just one patient.
“This exciting new technology might help people whose eyesight is very severely impaired,” he said.
Follow James on Twitter
A private special needs school, whose directors include businessmen associated with the Winterbourne View care home scandal, has been accused of putting profit ahead of pupils’ needs.
Annual fees paid by councils to send pupils to Leaways School in east London are £53,000 – higher than Eton.
One parent told a BBC investigation she is pulling out her son as she fears for his mental state if he stays there.
However, Leaways denied the claims that it put money ahead of welfare.
In a statement, the school said: “We strongly refute the suggestion profit is ever put ahead of the needs of children.
“The vast majority of families are happy with our school and they see their children doing very well here.”
The school says it was “deeply saddened to hear the opinions of a small minority… of our parent and staff community”.
‘Sold a dream’
One is Donna, who fought to get her 10-year-old son Javon into Leaways almost two years ago, believing the school would provide state-of-the-art support for an autistic child.
Now she says: “I was sold a dream. They actually have no idea… I feel like if my son stays there any longer, it will be detrimental to his mental state.”
Being there makes him anxious, she says, often he becomes mute, not speaking all day, or isolating himself for hours in the school’s sensory room.
‘Chaotic environment’
Lee Boyce, a former assistant head at Leaways, describes “a kind of systemic failure at a leadership level to… understand the complexity of those children’s needs and to put in place provision that met them”.
When she left in 2019, she says working conditions were stressful and a high staff turnover and absence rates contributed to a “chaotic environment” for pupils who were often already volatile.
Lee, now a principal inclusion advisor for a London borough, specialises in keeping such pupils in mainstream schools and says the £53,000 could be better spent.
“If you had even half of what you get for a child at Leaways… you could do amazing things,” she says.
Reward and responsibility
Leaways is part of Kedleston Group, which runs 13 schools and homes in England.
Kedleston’s directors include Denis and Paul Brosnan. In 2011, they were directors of Castlebeck, which owned the Winterbourne View private hospital near Bristol, where serious abuse was uncovered by a BBC Panorama investigation.
An inquiry the following year found Castlebeck “took financial reward without the responsibility”.
Some current Leaways staff believe profit is paramount at the school.
“It’s a business that happens to be a school,” one support worker told the BBC.
In 2019, Kedleston Group, which is owned by a Jersey-based holding company, had:
- a £5.3m operating profit, up from £4m in 2018
- a turnover of £32.7m, up nearly £4m on 2018
- operating profit on its London schools of £740,000
‘Failing him’
Donna says Javon’s Education and Health Care Plan (EHCP) – a legal document which details a child’s special educational needs and the support required – was not reviewed for nearly two years.
By law, these documents must be reviewed annually and this timescale remained in place during the pandemic.
Donna claims the amount of speech and language therapy and emotional literacy coaching provided by the school fell below the levels specified in his plan.
“How do you explain to a child with autism, that in actual fact mum got it totally wrong?”https://emp.bbc.co.uk/emp/SMPj/2.43.0/iframe.htmlmedia captionDonna: “How do I explain to him I got it wrong?”
Donna is not the only parent wanting to remove her child.
Another, who asked not to be named, also told of delays to educational reviews and inadequate therapy.
At first sight Leaways “appears to be a super specialist school, glory and glitter. It ignites hopefulness and it’s just not that”, she said.
‘No teacher’
In 2016, when Brenda’s son Ethan started at Leaways, she says: “Everything was perfect.”
But in 2017 the head teacher left, followed by Ethan’s teacher, and the class was led by a teaching assistant for most of the next school year, Brenda adds.
Leaways says the use of teaching assistants to lead classes is “kept to an absolute minimum” and only when the alternative is “not to have the children in school at all”.
“Where possible we ensure that the teaching assistant is experienced, has an aptitude for leading the class and has a higher-level qualification,” it said.
“The school does not have a materially different staff turnover rate to the industry norm.”
But without a class teacher, Brenda says Ethan became anxious and aggressive and started having seizures.
When he was checked out for epilepsy at Great Ormond Street hospital, the consultant said: “It’s not epilepsy. It’s anxiety,” she remembers.
Eventually the school appointed a new teacher, “a godsend”, according to Brenda, and Ethan’s mental state improved,
But in the summer of 2019, she also left and Brenda decided it was time to remove Ethan.
The family felt there was no-one to hear why they were taking out their son: “There was nobody to tell. We just weren’t confident any more,” says Brenda.
‘Little training’
Lucy, who asked not to use her full name, was Ethan’s teacher in his last year at Leaways.
She was hoping to gain experience as a specialist autism teacher, an area where she had no formal training, but within weeks of starting in the school’s specialist unit, says she was asked to lead it.
She declined, saying: “It wasn’t what I was expecting… It became clear quite quickly that the school were making a profit from not meeting the needs of children.”
Some of the teachers were unqualified, she says, and support staff often had very limited experience and training.
“When you start working there, you’re just kind of thrown in,” she says, adding: “It’s harder to teach children with complex needs than it is to teach typically developing children.”
She says during her time at Leaways, access to therapies was limited. For example, there was one part-time counsellor to support some 50 children with social, emotional and mental health needs.
She says children in the mainstream school where she now works “have better access to therapy”.
“This very high fee-paying school is just not meeting the need.”
‘Consistent standards’
Leaways emphasises that Ofsted’s latest report, published in March, says the school’s leaders “ensure standards are met consistently”, that children are “well supervised” and staff supervision is “proportionate and appropriate”.
“We are also regularly visited for quality assurance by the local authorities who place children with us, who have also raised no concerns of any kind.
“No school is perfect and all have faced challenges as a result of Covid-19.
“Leaways has faced the dual challenges of both the pandemic and an industrial dispute.
“Where improvements are required, we are actively working with parents, our colleagues and all parties to make positive changes and progress wherever they are needed.”
A long-running dispute over pay and conditions ended recently with a deal between Leaways and the National Education Union.
Hollyoaks‘ Courtney Campbell and Sid Sumner’s relationship has taken a rather different turn over the past few weeks, with Sid coming to harbour feelings for his teacher as she has supported him through his partial leg amputation.
Caring Courtney (Amy Conachan) has been encouraging Sid (Billy Price) to pursue his career goal of joining the police and Sid recently misread the signals and kissed his teacher. Despite Courtney telling Sid that his behaviour had been inappropriate, Sid continues to harbour feelings for Courtney and the situation takes another turn next week when Sid lies about the nature of their relationship.
Actress Amy Conachan, who plays Hollyoaks High teacher Courtney, has revealed to Inside Soap that Courtney definitely has no romantic feelings toward her student.
“She had no idea Sid had feelings for her,” she said. “So she was shocked and embarrassed, and aware Sid probably felt the same. Courtney works in a school, so she knows teens do silly things, and just shrugs it off.”
In upcoming scenes, Sid will snap a photo of himself and Courtney while they chat and share it online. This leads to Courtney facing trouble at work as she is questioned over her relationship with Sid during her interview for the deputy headteacher job.
But Amy revealed that Courtney won’t be condemning Sid for his behaviour, explaining that her character is understanding of the teen’s confused feelings.
“I feel bad for Sid! And I think Courtney does too, she’s emotionally aware and mature,” the actress explained. “Her job is to work with kids, so she realises why Sid spreads the rumours and takes the photo. So while she’s angry, she understands and loves him anyway.”
She continued: “I think Sid’s problem at the moment is that he can’t distinguish between caring for someone and having a crush on them. But Sid’s been through a lot in a short amount of time, and all while being a teenager – it’s a lot to deal with.”
Hollyoaks has portrayed student-teacher relationships before, most notably in the case of Becca Dean and Justin Burton’s troubled romance in 2006. But could Courtney and Sid be heading toward a two-way romantic relationship?
“It would be a real shame if it got to that stage,” Amy said. “And it would be strange if anything else developed, as Courtney has been a maternal figure towards Sid. But you never know what’s around the corner…”
Will Sid’s infatuation get Courtney into serious trouble?
Hollyoaks airs weeknights at 6.30pm on Channel 4, with first look screenings at 7pm on E4.
A press release:
An innovative wheelchair wheel design has won Bolt Burdon Kemp’s Design the Change Competition. The competition, in its second year, is intended to raise awareness of the day-to-day challenges facing people with spinal cord injuries and how innovative designs can make a real difference.
The competition invites UK-based university students to design a product aimed at improving the lives of people with a spinal cord injury. Law firm Bolt Burdon Kemp, which supports people with spinal cord injuries, was looking for a design which was both unique and practical.
Winner Thomas Salkeld, 23, a third year Product Design BSc student from Cardiff Metropolitan University, designed the ‘Smart Wheel’, a motorised wheel which can be added to most wheelchairs and provides users with assistance on uneven ground, elevation and on long journeys. The wheel can be controlled from the user’s phone.
Thomas wins £3,000, with an additional £2,000 being awarded to Cardiff Metropolitan University.
Design the Change is supported by Bolt Burdon Kemp’s charity partner Cerebra which works to improve the lives of children with neurological conditions. Part of the charity’s work is to design bespoke equipment to meet families’ needs at their innovation centre and as part of his prize, Thomas will have a week’s placement at the centre in Wales next year.
Thomas really impressed the judges by researching his design thoroughly and taking into account the challenges facing those with a spinal cord injury who use a wheelchair. He bought a wheelchair himself and found travelling in it exhausting, especially uphill. He spoke to several people who had sustained a spinal cord injury and who were also wheelchairs users and ran his prototypes by them for feedback.
Highly commended in the competition and also offered a week’s placement at Cerebra is Anna Lis, 21, a third year Product Design student at the University for the Creative Arts. Anna’s Superhuman Shoe and Ankle Foot Orthosis design provides support for people with drop foot, a common side-effect of a spinal cord injury. The judging panel were impressed with Anna’s detailed research and the fact her shoe celebrates the support it offers, rather than disguising its specialist features.
Victoria Oliver, head of the spinal injury team at Bolt Burdon Kemp, said: “We were blown away by the quality of the entries this year and it’s fantastic to see how much research went into everyone’s designs. A spinal cord injury is a life changing event that makes even the most mundane of tasks time-consuming, and innovative designs and products can really help make the world more accessible to the 50,000 people living with a spinal cord injury in the UK.
“Thomas’s design showed real awareness of the challenges facing those with a spinal cord injury who use a wheelchair and he went to great lengths to make sure his Smart Wheel design was practical, comfortable, and aesthetically pleasing.”
Winner Thomas Salkeld said: “I am ecstatic about winning the competition as designing to help people is my passion and what I wish to pursue in the future. The aim of my design was to really take into consideration what the users want and the problems they face every day in regards to their mobility in a wheelchair, then applying my engineering, design, prototyping and technology skills that were necessary. The aesthetics were designed to be functional but also pleasing to the eye, allowing the users to be proud of the product on their wheelchairs. I want to say a huge thank you to a number of people but first to Bolt Burdon Kemp and the judges for giving me the opportunity to participate in such an interesting brief and subject. I would like to thank James Dwyer, Louise Evans and Darren Povey for giving me feedback and a glimpse into some of the struggles they have in wheelchairs which really drove my project forward. Lastly I would like to thank my tutors Joe Venables and Clara Watkins for supporting me throughout the project.”
Thomas’s design was judged by a panel of experts including Christa Dyson, trustee for the Spinal Injuries Association, Dr Ross Head, Product Design Manager for the Cerebra Innovation Centre, Ian Hoskings, club chairman, vice coach and player for Stoke Mandeville Wheelchair rugby club, Lady-Marie Dawson-Malcolm, Support Network Officer for the Spinal Injuries Association and Doug Nevill, the Head of Mechanical Design at Williams F1.
Broadcaster Jeremy Paxman has revealed he has been diagnosed with Parkinson’s disease.
The former Newsnight presenter said he was receiving “excellent” treatment and that his symptoms are “currently mild”.
“I plan to continue broadcasting and writing for as long as they’ll have me,” he said.
The 71-year-old has hosted University Challenge since 1994 and is renowned for his fiercely inquisitorial interviewing style.
Born in Leeds in 1950, the presenter joined Newsnight in 1989 and remained with BBC Two’s nightly bulletin until June 2014.
In recent years he has presented documentaries about the British Empire and Winston Churchill.
Paxman said he would be making no further comment and had written about his diagnosis for the June edition of Saga magazine.
This year’s Eurovision entry from Norway, TIX, has arrived with more than just music on his agenda.
“To me Eurovision is not much about the contest, especially this year. It’s the biggest arena to talk about diversity, acceptance and inclusion.”
TIX – real name Andreas Haukeland – takes his name from the tics he has due to his Tourette’s Syndrome.
During the semi-final on Tuesday, TIX showed his tics live on stage by removing his sunglasses.
He describes that moment as “one of the most difficult things I could ever do” as his tics “just go bananas”.
These tics usually present as twitching in his facial muscles, and blinking.
He adds: “The song is about feeling inadequate. It’s about feeling out of place in this world.
“But the point of that moment is to show people this angel. What is he hiding? What’s his weakness? Why is he being held back by these demons? What is he afraid of?”
Fallen angel
TIX got to the final by winning a public vote in Norway, and then qualifying in the top ten of the semi-final in Rotterdam on Tuesday.
The themes behind the song, Fallen Angel, come from TIX’s personal experience with bullying and mental health, themes which he shared in an interview with NRK ahead of his selection for Norway.
“I think this year more than ever, it’s important to talk about it because of the current situation in the world.
“People have been having a miserable year, and a lot of people are suffering right now from mental illness and loneliness.”
Ewan Spence, Editor of Eurovision website ESC Insight, says TIX isn’t the first disabled artist to feature prominently at Eurovision.
“In 2015 you have the Finnish punk band PKN, who won through their national final and went on stage in Austria.
“There have been a number of blind performers and a couple of wheelchair users, such as Monika Kuszyńska for Poland in 2015.
“There’s also Bianca Nicholas, who sang for the UK with Electro Velvet in 2015. She is not visibly disabled, but has cystic fibrosis.”
TIX is hoping his music will have an impact across Europe, and for one fan in the UK, his position in the contest means a lot.
Jess Short, 24, from Cornwall, has Tourette’s and volunteers with the charity Tourette’s Action. She has been a Eurovision fan for more than a decade.
She says it’s “brilliant” to have someone like TIX on stage at Eurovision.
‘Embrace yourself’
“It shows that despite having something like Tourette’s, which can be so debilitating, you can live your dream and you could do anything that you put your mind to.”
TIX’s message to people like Jess across Europe is: “Don’t just be yourself, embrace yourself.”
He adds: “Once you embrace yourself, that’s when the happiness starts. Tourette’s is both a blessing and a curse, but try to focus on the blessing”.
The Eurovision Song Contest is being broadcast on Saturday 22 May on BBC One at 20:00 BST.
The Guardian have come up with a really great new project, Auditorial.
Audio storytelling is an avenue into other worlds. So when the Guardian was approached to take part in an experimental project to make journalism more accessible to low-vision and blind users, it felt like an opportunity we couldn’t turn down. Audio has always been about making stories more accessible, and this was an opportunity to push that even further.
The result is a storytelling website called Auditorial, created to showcase the possibilities of accessible stories for blind and low-vision audiences. The story is our own, paired with Google technology and the invaluable accessibility user-testing and expert advice provided by the Royal National Institute of Blind People (RNIB) – an example of what can be done when inclusive design and thinking are at the forefront from the start.
The website, which was created over a seven-month period, was born out of an episode of our Science Weekly podcast from 2018. And the story, similar to the original podcast, is based on Bernie Krause, one of the founders of a field known as soundscape ecology. Over 15 or so minutes, we use his story to explore the devastating effects of the climate crisis and other human-induced environmental destruction on the sounds of the natural world, from coral reefs to Costa Rican rainforests.
The Auditorial platform uses an assortment of accessibility features and tools to tell the story, including multimodal films with video and audio speed control, high contrast, text-only mode, and scale and focus controls. Users can press play to start the story and adjust the audio, visual and written settings as they are taken through the story.
The final product is something we are really proud of. There have been many lessons learned along the way, and our ideas of what we would end up with have changed as the project progressed; we were trying to do something that had never been done before. The hope is that we can go on to apply some of its key tenets to more of our journalism – and encourage others to do the same.
Enrich your storytelling with sound
Many low-vision and blind users currently access journalism online through screenreading software, which converts text into audio. This is often done in a synthetic voice and doesn’t always discriminate between essential text and other aspects, meaning the experience can be jarring.
But, as with podcasts, when a story is presented in audio, the result is a more immersive experience, where sound design and intonation can add emphasis and emotion, and characters are able to tell their story in their own words. While this won’t be possible for all of our online journalism, it’s something we should consider when thinking about things such as how we label images using something called “alt tags”.
The team worked to create more narrative alt tags to improve the story experience, such as this one describing the scene of Bernie Krause recording.
Write narrative visual descriptions
For those using screenreading software, alt tags are essential for letting users know what an image shows. And while most websites – including the Guardian’s – do provide these, they are often written as succinct labels. This can lead to quite a disjointed narrative experience.
So a big lesson for our team was how to make alt tags more descriptive and more in line with the narrative. They should feel part of the reader experience and, if done correctly, should play a role in telling the story to a person using assistive technologies.https://interactive.guim.co.uk/embed/from-tool/looping-video/index.html?poster-image=https%3A%2F%2Fuploads.guim.co.uk%2F2021%2F05%2F19%2FKeyViusal_500.mp4&mp4-video=https%3A%2F%2Fuploads.guim.co.uk%2F2021%2F05%2F19%2FKeyViusal_500.mp4An abstract red and blue illustration shows a howler monkey playfully hanging from a tree with a yellow leaf in its mouth. Behind the monkey, the forest trees part to show a sunset over the ocean. The image switches between a light and dark colour mode.
Offer alternative colour schemes
An important part of the project was providing visuals to enhance the story for users with low vision, such as light or colour sensitivities.
We addressed this by giving users the opportunity to choose between black and white, yellow and black, and blue and white, which are popular combinations. But Google was also able to introduce light and dark modes – a real game-changer for people who struggle with bright screens.
Accessible journalism
The Guardian has always been dedicated to digital innovation. When new storytelling formats and platforms emerge, we try to consider how these technologies will work for our audiences, and experiment with them to bring Guardian journalism to life. Auditorial is just the latest iteration of that.
While we continue to try to make our journalism as accessible as possible, there are always going to be things we can improve on. Throughout this project, we have learned so much from our partners at Google and the RNIB about accessibility and inclusive product design – findings we are really excited to be able to share with our readers everywhere.
In 1960s and 70s Britain, hundreds of black children were labelled as “educationally subnormal”, and wrongly sent to schools for pupils who were deemed to have low intelligence. For the first time, some former pupils have spoken about their experiences for a new BBC documentary.
In the 1970s, at the age of six, Noel Gordon was sent to what was known at the time as an “educationally subnormal” (ESN) boarding school, 15 miles (24km) from his home.
“That school was hell,” says Noel. “I spent 10 years there, and when I left at 16, I couldn’t even get a job because I couldn’t spell or fill out a job application.”
About a year before joining the ESN school, Noel went into hospital to have a tooth removed. He was given an anaesthetic, but it transpired that Noel had undiagnosed sickle cell anaemia, and the anaesthetic triggered a serious reaction.
Noel says the resulting health issues led to him being perceived as having learning disabilities and being recommended for a “special school”. Yet no evidence or explanation of his disability was ever given to him or his parents.
“Someone came and said they’d found “a special boarding school with a matron where they’d take care of my medical needs”, says Noel.
During that conversation they also said Noel was “a dunce. Stupid.”
But Noel’s parents were not made aware that his new school was for the so-called educationally subnormal. They had moved to England from Jamaica in the early ’60s and had high expectations for their son’s education.
During his first night at the boarding school, six-year-old Noel lay alone in bed, crying for his mum. The school felt cold and institutional.
“I can still smell the old wooden flip desks. Oh, and being racially abused on my first day,” he says.
A student hurled racial slurs at him in the classroom but wasn’t reprimanded – the teacher simply told him to sit down.
The school didn’t teach a curriculum. Although Noel was given a book to write in by a teacher, he was never taught basic grammar or how to spell. He did some basic addition and subtraction but during classes, he mainly did crafts and played games.
His parents only realised what kind of school it was when Noel, then seven, was punched by a 15-year-old boy, and his father visited for the first time.
Noel recalls his father saying to the headmaster, “This is a school for handicapped children” – using an outdated term. He says the headmaster replied, “Yeah, but we don’t like to use that word, we call them slow learners.”
The realisation was devastating, but Noel’s father felt powerless to change things.
Noel wasn’t given the chance to take exams and get qualifications. On reflection, he says being labelled educationally subnormal made him feel inferior for the rest of his life, and gave him a lot of psychological problems.
“Leaving school without any qualifications is one thing, but leaving school thinking you’re stupid is a different ball game altogether. It knocks your confidence,” he says.
A new BBC documentary tells the story of how black parents, teachers and activists banded together to force the education system to change.
The term “educationally subnormal” derived from the 1944 Education Act and was used to define those thought to have limited intellectual ability.
“That label made children feel inferior,” says education campaigner Prof Gus John, who came to the UK from Grenada in 1964 as a student, and soon became aware of the issue.
“Students from ESN schools wouldn’t go on to college or university. If they were lucky, they’d become a labourer. The term was paralysing and killed any sense of self-confidence and ambition.”
Primary and secondary ESN schools categorised children as having moderate learning disabilities, severe learning disabilities or being “un-teachable”.
These categories were broad and when students were recommended for ESN schools, robust reasons weren’t always given by teachers and psychologists.
While some ESN schools did have good examples of teaching, for many pupils, their needs were overlooked.
Black students were sent to these schools in significantly higher proportions. The documentary makers have seen a 1967 report from the now-defunct Inner London Education Authority (ILEA), which showed that the proportion of black immigrant children in ESN schools (28%) was double that of those in mainstream schools (15%).
“The percentage of black children in ESN schools relative to black students in normal schools was scandalous,” says Gus John.
But why were so many black children defined as subnormal?
Figures from the 1960s and 70s show that on average, the academic performance of black children was lower than their white counterparts. This fuelled a widespread belief that black children were intellectually inferior to white people.
A leaked local authority report in 1969, written by a head teacher called Alfred Doulton, argued that West Indian children in general had lower IQs. This claim was based on the results of IQ tests that were commonly taken by primary school children at the time.
One of the key proponents of such theories was Hans Eysenck, a former professor at the Institute of Psychiatry at Kings College London. He believed intelligence was genetically determined and cited a US study that seemed to show that the IQ of black children fell, on average, 12 points below white children.
As Gus John says in the documentary: “When people like Eysenck wrote about race and intelligence, what they were actually doing was justifying all those tropes that had been floating around throughout the period of enslavement, where people believed that not only were black people sub-human… but they can’t be expected to perform or to be as intelligent as white people.”
Many teachers saw black children as intellectually inferior, and feared that too many black pupils in a class would depress the attainment of white pupils.
Following a protest by white parents in Southall, in June 1965 the government issued guidance which underlined the social, language and possible medical needs of immigrant children, and suggested maintaining a limit of about 30% of immigrants in any one school.
As a consequence, many local authorities adopted the policy of bussing – sending immigrant children to schools outside their local area in an attempt to limit the number of ethnic minorities in schools. The practice finally ended in 1980.
“The education system fuelled and legitimised the idea that black Caribbean children were less intelligent than other children. This was why so many of them ended up at ESN schools. It was rampant racism,” says Gus John.
Many wrongly equated race with intellectual ability. But as the late educational psychologist Mollie Hunte argued, the generally poor attainment of black students wasn’t because of their intellectual ability. Instead, the tests used to assess pupils at the time were culturally biased. https://emp.bbc.co.uk/emp/SMPj/2.42.4/iframe.htmlmedia captionA new documentary examines one of the biggest scandals in the history of British education
As Gus John explains, the tests used references and vocabulary that newly-arrived Caribbean children were unfamiliar with.
“A key element was language,” says Gus John. “If you grew up in a Jamaican household, you’d use Jamaican English – patois or creole. The problem most Caribbean students had was that because it was a derivative of standard English, nobody believed that black students needed language support.”
As a result, they were not given the extra help other immigrant children, who spoke no English before they arrived, received.
According to Gus John, teachers didn’t try to understand the cultural barriers black children faced, and the assessments didn’t consider their domestic and socioeconomic circumstances – or the impact of migration. Many children would travel to the UK only once their parents had settled in. They arrived in an unfamiliar country to live with virtual strangers, who they had not seen for years.
“This displacement and movement caused a lot of trauma,” says Gus John. “There was grief and bereavement. Those children would often not see their grandparents again.”
According to the education campaigner, there was a culture of low expectations among teachers. Learning difficulties were mistaken as learning disabilities and black children were simply “written off” and sent to ESN schools.
That is what happened to Maisie Barrett from Leeds, who was sent to an ESN school at the age of seven in the 1960s.
“I initially went to a mainstream school. There, a teacher told my mother that I was ‘backwards’ and couldn’t learn. We were told that I’d be better off at a special school.”
Maisie says that the decision to send her to an ESN school was a mistake that ruined her life chances. Like Noel, she wasn’t taught a curriculum.
“We played games, had discos… I call it a ‘free school’ because the education was so basic and we played a lot more than we worked,” she says.
It was only in her 30s, decades after being sent to the ESN school, that Maisie was diagnosed with dyslexia.
“Rather than help me with my learning difficulties, I was simply dismissed as stupid. Teachers never took the time to find out why I struggled with learning. That messed up my confidence,” she says.
“I was slow, but a teacher should have taken the time to help me learn.”
According to Maisie, the lack of learning and support was only part of the problem.
“I went to a school that was a racist institution,” she says.
Both Noel and Maisie were eventually offered the chance to attend mainstream schools. By then however, it was too little too late.
In Noel’s case, he went to a local secondary school on a part-time basis from the age of 12 and spent the rest of the week at the ESN school.
“At the part-time secondary school, I would truant because of the intimidation of not having friends and not being able to read,” says Noel.
Maisie left her ESN school at the age of 13 and started at mainstream secondary school.
“My mum put me in touch with a black social worker who, after assessing me, said that I was intelligent and suggested that I was placed in the ESN school because of racism,” says Maisie.
By then, however, unable to read or write, Maisie found secondary school extremely challenging and she left with no qualifications.
Initially, many Caribbeans who migrated to the UK during the 1960s and 70s, had a favourable view of ESN schools. Often referred to as “special schools” by teachers, Caribbean parents, with little understanding of the British education system, thought these schools would provide better support and learning for their children.
“When my mother was told that I’d been recommended for a special school, I remember her smiling. She thought that a special school meant a better school,” says Maisie.
This presumption about “special” schools was also informed by Caribbeans’ experiences of schools back home.
“British education was seen as a route to social mobility and the aspirations of parents were very high,” says Gus John. “Teachers had a high profile in Caribbean communities, and parents initially trusted British teachers. It was a shock to find out that their children were being defined as subnormal.”
However, concerns soon developed among Caribbean parents. As they witnessed their children struggle with the basics of reading and writing, parent and action groups emerged.
For example in 1970, after discovering that there was a disproportionately high number of black children in ESN schools in north London, a group called the North London West Indian Association formally complained to the Race Relations Board – alleging discrimination under the 1968 Race Relations Act.
In 1971, a book called “How the West Indian Child is Made Educationally Subnormal in the British School System”, proved instrumental in shifting the opinion of black parents. The author, Grenadan writer and teacher Bernard Coard, taught in an ESN school and had noticed the high number of Caribbean children there. When a group of concerned parents asked him to look into the issue, he wrote the book in record time.
He argued that ESN schools were being used by the education authorities as a “dumping ground” for black children, and that teachers were mistaking the trauma caused by immigration for a lack of intelligence.
Bernard Coard’s seminal work led to positive action, and a sharp rise in black supplementary schools. These were Saturday schools set up by black parents with the aim of raising the educational attainment of black children. They would teach curriculum subjects alongside black history, to raise the self-esteem of children, to help them gain qualifications and prepare them for employment.
Following years of pressure and campaigning, the 1981 Education Act enshrined inclusivity in law and the term “educationally subnormal” was abolished as a defining category.
A government enquiry into the education of children from ethnic minority groups published in 1985 found that the low average IQ scores of West Indian children were not a significant factor in their low academic performance. Instead, racial prejudice in society at large was found to play a crucial role in their academic underachievement.
But for both Noel and Maisie, the impact from their time at ESN schools remains.
“The ESN label crippled my confidence. I could have been anybody – but I was never given the tools to be the person I was born to be,” says Maisie.
Despite writing two books and gaining four degrees after leaving school – including in Caribbean studies and creative writing – Maisie has struggled to find work over the years. Currently unemployed with two adult children, she did work as a dyslexic support worker but was made redundant a few years ago.
Maisie feels as if she has spent her life “catching up”, ever since leaving the ESN school.
Noel discovered he actually likes learning and has accumulated a number of impressive qualifications as an adult, including a degree in computing. His wall at home in Tottenham is covered in certificates. Nevertheless, he still struggles with his reading and writing.
“That ESN school has messed me up,” says Noel.
And despite significant progress since then, disparities in the education of black children remain. “The concerns we used to have about ESN are still very much with us now in terms of the number of black children being put into pupil referral units,” says Gus John.
Pupil referral units were set up in 1993 to teach children excluded from mainstream school. But black pupils are disproportionately hit with fixed-term exclusions in England – by three times as many in some places.
As Gus John considers the long-term impact of ESN schools, his biggest regret is that “a whole generation were dissuaded from dreaming big”.
- You can watch Subnormal: A British Scandal on BBC1 on Thursday 20 May at 21:00 or watch on iPlayer
- The documentary follows on from Steve McQueen’s film Education, part of his critically acclaimed mini-series Small Axe
Dean Du Plessis: The First Visually Impaired Commentator To Cover International Cricket
The grunt of a bowler’s delivery, the shuffle of the batsman’s feet and the crunch of willow striking leather.
These sounds – which often go unnoticed by cricket fans – are all that are needed for commentator Dean du Plessis to relay what is happening to his audience.
The 44-year-old Zimbabwean, who was born with tumours behind both retinas, is the first visually impaired commentator to cover international cricket.
“Commentating by sound is nothing spectacular,” he modestly says.
“I have a feed from the stump microphone, no other technology, and just listen very, very carefully; as much as sighted people pay close attention to what they’re seeing, that’s what I do.”
Speaking to BBC Sport, Du Plessis explains the origins of his love for cricket, his journey into the commentary box and the techniques he uses when calling the action.
Falling in love through the sound of cricket
Du Plessis is true cricket aficionado, whose commentary is often complemented with the most obscure statistics from years gone by.
But he was not always a fan of the sport.
“My brother Gary was a very, very good cricketer but I didn’t understand the game when I was young,” he says.
“Nobody really took time out to explain cricket to me and I actually hated and loathed that with a passion.”
Born in Harare, Du Plessis later went to study at boarding school in South Africa which is where his attachment to cricket first surfaced.
In 1991, South Africa travelled to India in what was their readmission to international cricket with the country’s apartheid regime coming to an end.
“I was listening to the third match of the series on Radio 2000, South Africa’s equivalent to Test Match Special,” Du Plessis says.
“All I heard was noise, that’s all I can describe, it was just a sound of about 60 or 70,000 Indian fanatics cheering and also continuously letting off fireworks.
“And vaguely through the noise of cheering and fireworks far away, you could hear a commentator trying to tell you what was going on and I didn’t understand what he was saying.
“It was something like ‘in comes Donald to Tendulkar, through square leg, past the umpire, down to backward square leg, the fielder picks up and they run through for a single’.
“I knew little bits about cricket but I didn’t know about backward square leg and things like that.
“But I started to listen and really enjoy it. I don’t know why because I didn’t understand what they were saying, but every time it went for four or a six, I could feel the excitement building.”
Phoning cricket stars and ‘being a pest’
As Du Plessis’ affection for the game grew, he set off on a mission to reach out to his new-found heroes.
While the modern sports fan may direct message Ben Stokes or tag Jofra Archer, Du Plessis would quite simply search for Zimbabwe cricketers in the local telephone directory.
“I would then have their number and phone using a call box from school, hoping my money wouldn’t run out and just wanting to talk cricket with these players,” he says.
“I was a real pest and the main poor victim was bowler Eddo Brandes, he was a chicken farmer and sometimes I would call him after I had finished school at 8pm and he had to literally be up with the chickens at three or four o’clock in the morning.
“He’d be a bit grumpy at first but once he was up and awake he was very, very willing to chat. I also used to phone Alastair Campbell who was very kind to me as were both the Flower brothers, Grant and Andy.”
But it was former Zimbabwe batsman David Houghton – now head coach at Derbyshire – who Du Plessis really struck up a friendship with.
“Dave was just a fountain of information, but what I really appreciate was he didn’t just answer my questions but he would ask all about me too,” adds Du Plessis.
“Once my money was about to run out and he asked for my number to call me back, and we spoke for a good 20 minutes.”
From fan to commentator
Having finished his studies, Du Plessis returned to Zimbabwe with a network of superstar cricket friends.
“It was the cricketers – the Flower brothers, Houghton, Campbell, Brandes – that made me feel very, very welcome and would invite me to come watch them play,” he says.
Du Plessis soon became a regular at national grounds and, having been given the freedom to walk around the media centres, was rubbing shoulders with broadcasters and cricket press.
During an international triangular series between Zimbabwe, India and West Indies in 2001, he was invited to join journalist Neil Manthorp, who was on old school friend, and former India batsman Ravi Shastri for a 15 minute chat on the Cricinfo website’s online radio broadcast.
Du Plessis’ knowledge and enthusiasm impressed both the broadcast team and those back at headquarters.
“It was meant to just be a short conversation on my enjoyment of cricket but Neil received an email from the office halfway through,” he says.
“The producers wanted to keep me on for the full 30 minutes and make sure I was a part of the rest of the series.
“And that’s pretty much how my commentary started. I then got my first television gig two years.”
How does he do it?
Du Plessis is often asked how he manages to identify what is happening on the field.
“Well, I don’t have any extra technology or extra stump mic or anybody telling me what’s going on,” he answers.
“I can tell you who the different bowlers are by the way they approach the crease.
“With Stuart Broad, for example, there’s a bit of a dragging sound as the ball is delivered he gives an explosive grunt as he gets to the wicket.
“Some approach the crease very quietly, like Freddie Flintoff who hardly made a sound, whereas Shane Warne, as a leg-spinner, had a huge grunt.”
Du Plessis can also determine which batter is on strike through the sound of their voice, and the direction in which the ball is hit by the noise it makes off the bat.
“In terms of batting you just listen very carefully to how the batters communicate with each other,” he says.
“When Andrew Strauss and Marcus Trescothick used to bat together, Trescothick would always just say “run” when he hit the ball whereas Strauss would say “Yeah come on, come on, come on”.
“And when the ball is hit through the off side, it has a very sharp, crack sound, as opposed to the ball being played through the leg side.
“I can also tell when sweep shots are being played because you can hear the bat hitting the ground with a scraping sound.”
‘I think I have found my niche’
A lifetime of listening to cricket coupled with the ability to recognise people by sound, touch and smell has enabled to Du Plessis to forge a successful career as a broadcaster.
A presenter of his own cricket podcast, he says his commentary work may need to take a back seat due to health reasons.
“I think I will have to do less of the commentary and that’s mainly due to the fact that I’ve lost quite a bit of my hearing, especially in my left ear,” he explains.
“Apparently that’s a common thing with blind people because we use our ears so enthusiastically.
“But I think I have found my niche in hosting, presenting and doing podcasts. I would love to progress my broadcasting career and perhaps emigrate from Zimbabwe, ideally to a cricket-playing nation.”
As our town and city centres reopen following Covid restrictions, changes are being made to accommodate new rules.
But are they making these places less accessible?
Disability rights campaigner Emily Nicole Roberts gives her experiences around Swansea.
Rugby bosses need to follow the NHL’s example in reducing risk of brain injury, according to former players.
In December, former Welsh international Alix Popham and a small group of former players announced they were suing World Rugby, the RFU and the Welsh Rugby Union over brain damage.
Popham was diagnosed with early onset dementia, which has been attributed to concussions sustained during his rugby-playing days.
He and other players are now asking rugby bosses to follow American football’s example in reducing the amount of contact in training sessions.
Popham has the framed jersey from his last Wales game – a win against England in 2008 – and has been shown pictures of him celebrating afterwards.
But says he cannot remember the game.
With many thanks to Benefits And Work.
The DWP has issued guidance to DLA decision makers on how to deal with awards for Long Covid in children, but there is no evidence that similar guidance has been issued for PIP or for the work capability assessment for ESA and UC.
The DWP has updated its 950 page Medical guidance for DLA and AA decision makers (child cases) to take account of Long Covid, or post-COVID as it is referred to in the guide.
Decision makers are told that children who remain unwell at 12 weeks after the onset of COVID-19 with a wide variety of symptoms, and whose long term prognosis is unknown, meet the diagnostic criteria for post-COVID syndrome.
Decision makers are told:
“Some may recover in a few more months and some may recover over a longer time period. Others may remain unwell or become more unwell over time. Fluctuating functional impairment and wide ranging symptoms that change over time, seem to be a feature of the condition.
“It is those children who have significant functional impairment at 12 weeks and do not seem to be recovering, who may have entitlement to DLA Child.
“Always consider the qualifying period and prospective test when assessing needs in a claim for DLA Child.
“A child does not have to have had a positive test result to be diagnosed with the syndrome. Testing has not always been easily available.”
The guidance includes symptoms of post-COVID.
Decision makers are told they must refer all cases where post-COVID is stated as a disability to the on site health professional before they make a decision on the claim, but that where an award is made, 12 months is appropriate.
What we don’t know yet is what guidance has been issued to assessors and decision makers relating to post-COVID in connection with PIP or the work capability assessment.
Benefits and Work has made a freedom of information request for any such guidance. We’ll let you know what we find out.
A man who was paralysed from the neck down in an accident more than a decade ago has written sentences using a computer system that turns imagined handwriting into words.
It is the first time scientists have created sentences from brain activity linked to handwriting and paves the way for more sophisticated devices to help paralysed people communicate faster and more clearly.
The man, known as T5, who is in his 60s and lost practically all movement below his neck after a spinal cord injury in 2007, was able to write 18 words a minute when connected to the system. On individual letters, his “mindwriting” was more than 94% accurate.Advertisementhttps://a835f98c50ad0aa11fed546d096364b8.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
Frank Willett, a research scientist on the project at Stanford University in California, said the approach opened the door to decoding other imagined actions, such as 10-finger touch typing and attempted speech for patients who had permanently lost their voices. “Instead of detecting letters, the algorithm would be detecting syllables, or rather phonemes, the fundamental unit of speech,” he said.
Amy Orsborn, an expert in neural engineering at the University of Washington in Seattle, who was not involved in the work, called it “a remarkable advance” in the field.
Scientists have developed numerous software packages and devices to help paralysed people communicate, ranging from speech recognition programs to the muscle-driven cursor system created for the late Cambridge cosmologist Stephen Hawking, who used a screen on which a cursor automatically moved over the letters of the alphabet. To select one, and to build up words, he simply tensed his cheek.
Hawking’s system was a big improvement on the painstaking process used by Jean-Dominique Bauby, the late editor-in-chief of French Elle, to write his 1997 memoir, The Diving Bell and the Butterfly. Bauby had a massive stroke in 1995 that left him “locked-in”, able to blink only his left eyelid. He dictated the entire book by having the freelance editor Claude Mendibil read the alphabet aloud and blinking when she reached the next letter he wanted. For all the progress made since then, researchers have long dreamed of more efficient systems that tapped directly into the brain.
In the case of T5, nine years after his accident he enrolled on a clinical trial called BrainGate2 to investigate the safety of brain-computer interfaces (BCIs). These are small, implantable computer chips that read electrical activity straight from the brain. The man had two computer chips, each the size of a baby aspirin and bearing 100 electrodes, placed on the left side of his brain where neurons send signals to control the right hand.
Willett and his colleagues asked T5 to imagine he was holding a pen above a pad of paper and then to try to write individual letters of the alphabet, even though he could not move his arm or hand. As he tried, they recorded activity from the brain region that would have controlled his movements.
The scientists found that more than 10 years after the accident, the man’s brain still produced distinct patterns of neural activity for each letter and various punctuation marks.
These recordings, and others taken as T5 tried to write out example sentences, were used to train an artificial intelligence algorithm. Many sessions later, the algorithm could predict in real time which letter the man was trying to write with 94.1% accuracy. When the scientists added autocorrect the accuracy rose to 99%.
During the sessions, T5 often felt that the imaginary pen in his hand was moving across the page and tracing out letters, and that he could “write” faster if he kept letters small, Willetts said.
Some letters were harder to distinguish than others, according to the study in Nature. The letters r, h and n, for example, require similar movements and so similar brain activity.
One unknown is how well the algorithm might work for languages not based on the Roman alphabet. For example, Tamil has 247 letters, many of which look similar, which could confuse the algorithm.
It will be some time before such brain-reading systems are ready for wider use. In an accompanying commentary, Orsborn and Pavithra Rajeswaran, also at the University of Washington, write that implantable BCIs “will need to provide tremendous performance and usability benefits to justify the expense and risks associated with implanting electrodes into the brain”.
Orsborn said: “This study is a remarkable advance for intracortical brain-computer interfaces because it achieves a huge leap in typing speed and accuracy.
“While this gives us many reasons to be optimistic about the future of BCIs, challenges remain to develop systems that we can use for daily life. For instance, they demonstrated their algorithms in one person for a brief time. How we extend this work to assure the algorithms work well every day and for everyone is an exciting new challenge.”
BBC AND UK ARTS COUNCILS CELEBRATE THE WORK OF DISABLED ARTISTS WITH CULTURE IN QUARANTINE COMMISSIONS
A press release:
- The BBC, in partnership with Arts Council England, Arts Council of Northern Ireland, Arts Council of Wales and Creative Scotland has commissioned film and audio works from twelve disabled artists to be hosted across BBC platforms this summer.
- Commissions include a day in the lockdown life of blind comedian Jamie MacDonald, drama inspired by the work of award-winning journalist Frances Ryan, a short film from Deaf rapper Signkid, an adaptation ofperformance poet Alice McCullough’s one-woman show Earth to Alice,and theatre show Louder is Not Always Clearer byDeaf performer Jonny Cotsen.
Twelve D/deaf, neurodivergent and disabled professional artists based in England, Northern Ireland, Wales and Scotland have been commissioned to produce new film and audio works for BBC platforms this summer.
The commissioning programme is part of BBC Arts’ Culture in Quarantine initiative, which has brought the arts into people’s homes during lockdown. The twelve new commissions will champion the work of disabled artists by helping them produce work when some may have been self-isolating, and provide a platform to explore their experiences of living through Covid-19.
The programme was established in a partnership between BBC Arts, Arts Council England, Arts Council of Northern Ireland, Arts Council of Wales and Creative Scotland to mark the 25th anniversary of the passing of the Disability Discrimination Act into law, forming part of wider disability programming across the BBC.
The film and audio works commissioned include performance dramas, dance, comedy, spoken word poetry and animation, with the majority of artists highlighting aspects of the disabled experience of living through the pandemic.
Commissions were selected by a panel including representatives from BBC Arts, Arts Council England, Arts Council of Northern Ireland, Arts Council of Wales, Creative Scotland, Unlimited and the UK Disability Arts Alliance.
Lamia Dabboussy, BBC Head of Arts said: “This batch of commissions from artists across the country showcases the breadth of inspiring work we’ve all missed experiencing over this past lockdown year. I’m thrilled that, as part of Culture in Quarantine, these pieces will be brought to life across BBC platforms. It’s imperative that D/deaf, neurodivergent and disabled professional artists are supported to carry on making brilliant work, as the constraints and continuing effects of this pandemic threaten to silence their vital creative voice.”
The new commissions are:-
- SILENT WORLD, a short music film by Deaf musician Signkid, using rap, spoken word and Signkid’s innovative ‘sign-slang’ to creatively explore how living in a silent world has intensified during the Covid-19 pandemic.
- Hen Night, a shortfilm by award winning theatre and screen writer/director Vici Wreford-Sinnott, inspired by the writing of award-winning journalist Frances Ryan. Jessica has just had her hen night – a last night of freedom but not in the ways she, or any of us, might have imagined.
- Arising out of lockdown, Spectrum Soundsby Andrew Hugill, a collection of seven short pieces of music, associated with the colours of the autistic spectrum.
- Face It, filmedcomedy dramamonologues by writer Miranda Walker about two women exploring how they feel about their faces in the modern swipe-right world, and the impact of wearing face masks to protect against Covid-19. Produced by Michaela Hennessy-Vass.
- How to Thrive in 2050! 8 Tentacular Workouts for a Tantalising Future! Film by artist Kai Syng Tan. Acall for action for a more creative, equitable and neuro-fantastic future by a ‘human-octopussy’.
- Film adapted from her one-woman show Earth to Alice, written and performed byBelfastpoet and stand-up comedian Alice McCullough, about navigating the twists and turns of bipolar disorder during the Covid-19 pandemic.
- Pandemic Parenting: Pandemonium, dance theatre film by Irish playwright Shannon Yee, exploring the unique challenges for parents of newly born and young children during lockdown.
- The Cat, The Mouse and The Sausage, an animationof a Grimm’s Brothers fairy tale by award-winning filmmakerJoel Simon.
- Film adaptation ofstage show Louder is Not Always Clearer, created by Mr and Mrs Clark and performed by Deaf artist Jonny Cotsen, an honest portrayal of the vulnerability of a Deaf man in a hearing world.
- Complexity of Skin, a dance filmco-directed, written, choreographed and performedby Matthew Gough and Krystal S. Lowe, exploring touch in periods of isolation and set in a flat during lockdown.
- Blind-sided, a radio comedy-drama of a day in the lockdown life of blind comedian Jamie MacDonald as he leaves the familiarity of his home in Glasgow.
- AISLE by Ellen Renton and Jess Fig, ashort film combining poetry and illustration exploring the disabled experience of going to the supermarket during the pandemic.
Darren Henley, Chief Executive of Arts Council England said: “Culture and creativity have been lifelines for many of us throughout the pandemic, so we’re excited to support these commissions, which will encourage D/deaf, disabled and neurodivergent artists to explore their experiences of lockdown, and ensure audiences can continue to enjoy even more brilliant cultural work across BBC platforms.”
Gilly Campbell, Head of Community Arts and Education, Arts Council of Northern Ireland commented: “The Arts Council of Northern Ireland is proud to partner with BBC Arts and The Space to offer three artists from Northern Ireland the opportunity to create new work as part of BBC Arts’ Culture In Quarantine initiative. Alice McCullough, Shannon Yee and Joel Simon are hugely talented voices in the arts sector here in Northern Ireland and we’re delighted that their work will be championed on a UK-wide platform, offering a significant increase in profile for these artists.”
Minister, Deirdre Hargey MLA, Department for Communities, NI Executive said: “This is a very important project and a great opportunity to support our D/deaf disabled artists to develop professionally and create new work that can be showcased locally, nationally and internationally.”
Diane Hebb, Director of Arts Engagement, Arts Council of Wales said: “In this extraordinary year when the impact of the pandemic has had such a disruptive and alarming impact on so many lives, particularly the lives of our most vulnerable people, it’s more important than ever to support and showcase the work of our inspirational creative artists. We are delighted to see our own Wales based artists included in this programme of sensitive and provocative work and hope that audiences across the UK will be inspired by their resilience, creativity and incredible talent.”
Iain Munro, CEO, Creative Scotland commented: “Creative Scotland is thrilled to support this incredible range of talented artists and inspiring commissions as part of our partnership with BBC Arts and The Space, bringing the work of talented D/deaf, neurodivergent and disabled artists to BBC platforms. We celebrate the way diversity of thought and a diversity of experience feeds innovation and creativity and are delighted that thanks to National lottery players, audiences will enjoy and be inspired by the wide range of stories, perspectives and experiences supported through this initiative.”
Each of the commissioned artists will be assigned an Executive Producer from digital support agency The Space, in partnership with Unlimited, an arts commissioning programme that enables new work by disabled artists to reach UK and international audiences. The Executive Producer will mentor and support the artists throughout production and delivery of their work to BBC platforms this summer.
These commissions build on the success of BBC Arts Culture in Quarantine artists’ commissioning strand, launched in April 2020 by BBC Arts and Arts Council England, which invited artists to give a creative response to the challenges of lockdown. A total of 25 commissions were produced, which achieved audiences in the millions across BBC and social platforms.
DWP Denies Using Algorithms For LEAP Review, But Admits To Using Automated ‘Business Rules’
With many thanks to Benefits And Work.
The DWP has denied using algorithms in the course of making LEAP decisions that have prevented many thousands of PIP claimants from getting arrears, but appear to have admitted to using ‘business rules’ instead. However, there is a big question mark over how ‘business rules’ differ from algorithms and we are now looking for a specialist who can help us investigate this further.
As regular readers know, the LEAP review was set up by the DWP to identify claimants who had missed out on large sums of PIP, from £3,000 to £12,000 each, because the department got the law wrong.
Originally, the DWP estimated that 164,000 claimants were due arrears of PIP due to an error in relation to the mobility component. Yet, with well over half of 1.6 million claims allegedly reviewed, the DWP have only made awards in 3,700 cases.
Benefits and Work made a Freedom of Information request for the Data Protection Impact Assessment (DPIA) carried out in connection with the use of Automated Decision Making (algorithms) for the LEAP review.
If the DWP had used algorithms, there would be a legal duty to carry out a DPIA.
However, the DWP have replied that no such document exists and instead referred us to a parliamentary answer by Baroness Stedman-Scott in response to a question about which algorithms the DWP use to decide on eligibility for benefits:
“Decisions on applications for welfare payments and services are made by the Department colleagues. The Department does not use algorithms to make decisions in this way. The Department does use business rules, some of which are automated and focus on everyday repetitive processing tasks so that colleagues can spend more time supporting vulnerable claimants.”
We know that the DWP have drawn up a list of the conditions they consider are most likely to result in an award of arrears under LEAP. We also know they have a table of which age groups are most likely to get an award.
But that was how they arrived at a figure of 164,000 claimants being eligible.
Clearly other rules must be being used as well to exclude claimants from being considered.
So, what we don’t know is when a set of ‘automated business rules’ becomes an algorithm.
A business rule defines or constrains some aspect of business and always resolves to either true or false . . . For example, a business rule might state that no credit check is to be performed on return customers. Other examples of business rules include requiring a rental agent to disallow a rental tenant if their credit rating is too low, or requiring company agents to use a list of preferred suppliers and supply schedules.
Elsewhere Wikipedia explains that:
The programs designed specifically to run business rules are called rule engines. More complete systems that support the writing, deployment and management of business rules are called business rules management systems (BRMSs).
Many commercial rule engines provide the Rete algorithm, a proprietary algorithm that embodies many of the principles of Rete.
Why automate decisions?
Automating decisions through a business rules management system (BRMS) enables businesses to create and manage business logic independently from applications and processes. Businesses can also leverage AI and machine learning to make decisions with precision, targeting each customer interaction intelligently.
Benefits and Work is not giving up on finding out why well over 100,000 PIP claimants are being deprived of what appears to be their legal entitlement. If there is anyone out there with the expertise to explain the differences between automated business rules and algorithms from a technical or legal point of view, please do drop us an email at admin@benefitsandwork.co.uk
Bangladeshi men have been hit hard by the pandemic – in terms of higher death rates compared to other communities, shut down industries and job losses. But with lockdown easing, many fear that the impact of the pandemic on their mental health may be overlooked.
Imran Khan lost his father earlier this year to coronavirus. While he reached out to this GP for support, other Bangladeshi men are less likely to do so, says psychologist Shah Alam. He believes Islam could play a key role in getting men to open up and reducing the stigma around mental health issues. Imam Sheikh Abdullah Hasan has been exploring this – he has been providing mental health toolkits to more than 200 imams and scholars around the UK.
If you are affected by the issues in this story, help and support are available at BBC Action Line.
EastEnders has been working with the mental health charity Mind on a storyline focusing on schizophrenia, producers confirmed on Monday.
The BBC soap asked Mind to offer insight into the experiences of its character Isaac Baptiste – a black man grappling with the physical and social issues associated with the condition.
Actor Stevie Basaula has said it’s “a privilege” to help tell his story.
The announcement coincides with the start of Mental Health Awareness Week.
The show’s hook-up with the charity was designed to help the actors, producers and writers learn more about “the emotional and social experience of living with schizophrenia, particularly looking at attitudes towards mental health in African Caribbean communities,” EastEnders bosses said.
Mind research suggests black men are far more likely than others to be diagnosed with severe mental health problems, and are also far more likely to be sectioned under the Mental Health Act.
However, up until 11-years-old, black boys don’t have poorer mental health than others of their age.
Mind says there are multiple reasons for this including stigma, cultural barriers, and systemic discrimination, all of which are more directly experienced by black boys and young black men as they get older.
The ongoing storyline is, over the coming weeks, intended to encourage “vital conversations about the realities of living with a mental health problem”.
What is schizophrenia?
Schizophrenia is a severe long-term mental health condition. It causes a range of different psychological symptoms.
Doctors often describe schizophrenia as a type of psychosis. This means the person may not always be able to distinguish their own thoughts and ideas from reality.
Symptoms can include hallucinations, delusions, muddled thoughts and a loss of interest in everyday activities.
Schizophrenia does not cause someone to be violent and people with schizophrenia do not have a split personality.
Source: NHS
For the role, Basaula drew on the real life experiences of a Mind volunteer named Antonio, as well as lessons from Mind’s Young Black Men programme.
He described the storyline as being one that is “very close to my heart”.
“I hope it will start a dialogue for people to have conversations about mental health and that anyone living with the condition will feel seen,” said the actor.
“Working with Mind has been so useful, I spoke to a young man who bravely shared his story and it was inspiring to learn how he’s managing his condition.”
He added: “There’s so much we think we know about schizophrenia, but it’s often not the reality for people living with the condition.
“I hope that anyone engaging with Isaac’s story will gain a better understanding and can approach someone they know that may be struggling from a more positive place.”
Viewers have already seen Isaac share his diagnosis with his dad Patrick, and his mum Sheree’s resistance to him making it public knowledge – due to fears around stigmatising views from friends and family.
Isaac’s own fears around the circumstances of his brother’s death and his dad taking part in a medical trial will lead to him to questioning his own diagnosis and abruptly stopping taking his medication.
EastEnders executive producer Jon Sen said that working with the charity was “imperative in ensuring we tell Isaac’s story truthfully”.
“There’s a multitude of layers to this storyline and Mind’s expertise has been crucial as we explore Isaac’s experience,” said Sen.
A press release:
UK-wide activity to reach the 1.2 million eligible people who do not currently use the Motability Scheme
People with disabilities and their families across the UK will be able to watch the first ever television advert for the Motability Scheme as its national awareness campaign ‘Everyday Freedom’ pilots this spring. Alongside a print, digital and PR campaign, the national television advert aims to boost awareness and understanding of the Scheme amongst those who are eligible to join and their families.
Currently only one-third of eligible disabled people are enjoying the benefits of a worry-free lease package through the Motability Scheme, while 1.2 million people are estimated to not be making the most of the everyday freedom it can offer. Providing affordable, reliable cars to those with disabilities, the Motability Scheme has spent over 40 years supporting people to maintain their independence.
After a successful regional pilot, this national pilot will see the television advert run across ITV, Channel 4 and selected Sky channels for around three months. This will be supported by a radio, digital and national newspaper campaign, and a range of content on social channels. The campaign will go live this month. You can view the television advert here.
Delia Ray, head of marketing for Motability Operations, which operates the Scheme under contract to Motability, a national disability charity, said:
“We are proud to be providing worry-free mobility to over 630,000 customers across the UK. However, we know that over a million more people with qualifying allowances could also access the Scheme and benefit from the freedom and independence it offers, but many are unaware of how it could help them.
“This campaign therefore aims to showcase what the Scheme offers to many more people with disabilities, and their families and carers, encouraging them to find out more. And television, with its powerful impact and potential to reach many thousands of viewers, is at the heart of this.
“When customers talk about the impact of the Scheme, they frequently use words such as independence and freedom. It is this essence that has inspired our Everyday Freedom campaign, and we’re excited to be sharing it with more people this spring.”
Through the Motability Scheme, recipients of the Enhanced Rate of the Mobility Component of Personal Independence Payment, Higher Rate Mobility Component of Disability Living Allowance, War Pensioners’ Mobility Supplement or Armed Forces Independence Payment can choose to exchange their weekly allowance to lease a new vehicle.
Leasing a car, scooter or powered wheelchair through the Motability Scheme is simple and affordable. The three-year vehicle lease package includes insurance for up to three named drivers, RAC breakdown assistance, vehicle servicing and maintenance, as well as tyre and windscreen repair and replacement.
Motability Operations, the company which operates the Scheme under contract to Motability, the Charity, offers affordable, convenient, worry-free motoring to over 630,000 disabled customers and their families. It has built a strong reputation, achieving high standards for customer service and engagement, and provides cars, powered wheelchairs and scooters that lead the way in value-for-money, effectiveness and reliability. It pays no shareholder dividends, meaning that all profits are reinvested for the benefit of people with disabilities.
Please visit motability.co.uk for more information or call 0800 953 7000.
A press release:
The National Deaf Children’s Society has welcomed the Government’s announcement that face masks will no longer be recommended anywhere in school for pupils in England from Monday, May 17th. They will also not be recommended for staff in classrooms.
Ian Noon, Head of Policy at the National Deaf Children’s Society, said:
“Today’s announcement will mean thousands of deaf children and young people can breathe a huge sigh of relief. For more than a year, they’ve struggled against isolation, loneliness and inaccessible online lessons, only to be hit with a whole new set of challenges caused by face masks when they returned to school.
“Public health must always be the priority, but deaf young people have repeatedly told us that face masks left them seriously struggling to socialise, understand their teacher and maintain their mental health during what was an extremely challenging period of their lives.
“Taking face masks out of classrooms and highlighting the benefits of transparent ones are both signs of real progress. Hopefully this heralds a new dawn for deaf children and young people, where they can be confident that their needs will now be considered whenever major decisions are made.”
DWP Faces More Legal Action As BBC Reveals 150 Benefits Related Deaths Or Episodes Causing Serious Harm
With many thanks to Benefits And Work.
The DWP is facing at least three court actions relating to the deaths of benefits claimants at the same time as the BBC has revealed that the department has carried out 150 internal reviews into the death or serious harm to claimants.
Philippa Day’s family are suing the DWP and Capita for breaches of her human rights and the harm both Philippa and her family suffered as the result of the way her PIP claim was dealt with.
Philippa took her own life after her DLA was wrongly stopped and she was required to attend a PIP face-to-face assessment, in spite of experiencing mental health issues including emotionally unstable personality disorder (EUPD), anxiety, depression and agoraphobia.
As already reported, the High Court is to hear an application for a fresh inquest into the death of Jodey Whiting.
Jodey, who had multiple physical and mental health conditions, was wrongly told to attend a work capability assessment, which she was unable to do. Jodey took her own life shortly after receiving letters telling her that her benefits would stop.
The family of Errol Graham have submitted an application to the Court of Appeal in an attempt to overturn the High Court decision that the DWP’s safeguarding policy is lawful.
Errol Graham was 57 when he starved to death in June 2018. His ESA and housing benefit were stopped after he failed to attend a work capability assessment. This was done without checking on his mental or physical wellbeing, even though he was known to have serious mental health issues.
Meanwhile, the BBC has revealed that since 2012 the DWP has carried out more than 150 reviews into cases where claimants suffered serious harm or died in circumstances that involved the department.
60 peer reviews were carried out by the DWP between 2012 and 2014.
From 2015 the DWP adopted a new system of ‘internal process reviews’ and 84 of these have taken place with another six soon to be completed.
The BBC has also collated press reports on 82 people who died after DWP activity, such as their benefits being stopped. 35 of these claimants had mental health issues.
You can read more about this story on the BBC website, which also has a dataset of 107 people whose deaths were allegedly linked to DWP activity.
There is more coverage in the Guardian
There is also more information on the Leigh Day website.
Tech entrepreneur Elon Musk has revealed he has Asperger’s syndrome while appearing on the US comedy sketch series Saturday Night Live (SNL).
The 49-year-old told viewers he was “the first person with Asperger’s” to host the long-running programme – to loud cheers from the audience.
People with Asperger’s interpret the environment around them differently to other people.
It is thought to be the first time Mr Musk has spoken about his condition.
The tech boss was guest hosting the sketch show – a coveted role that has been filled by an array of celebrities since SNL’s inception in the 1970s. These include Adele, Chris Rock, Ringo Starr, and Will Ferrell.
“I don’t always have a lot of intonation or variation in how I speak… which I’m told makes for great comedy,” he joked in his opening monologue. “I’m actually making history tonight as the first person with Asperger’s to host SNL.”
His comment prompted a round of applause from the studio audience.
Some people on social media, however, questioned his claim. They pointed out that the comedian Dan Aykroyd, who has spoken publicly about his experience with Tourette’s and Asperger’s syndrome, has previously hosted SNL.
Mr Musk, who has more than 53 million followers on Twitter, also joked about his use of social media. He has faced criticism and even legal threats over his tweets in the past.
“Look, I know I sometimes say or post strange things, but that’s just how my brain works,” he said.
“To anyone who’s been offended, I just want to say I reinvented electric cars, and I’m sending people to Mars in a rocket ship. Did you think I was also going to be a chill, normal dude?”
What is Asperger’s syndrome?
- Asperger’s syndrome is a lifelong disability which affects people in many different ways
- Some may choose to keep using the term, while others may prefer to refer to themselves as autistic or on the autistic spectrum
- Those with the syndrome may have difficulties interpreting verbal and non-verbal language, and may need more time to process information
- They may also have trouble expressing their feelings in a conventional way. But they can be more empathetic or emotionally aware than non-autistic people
- Many people with Asperger’s syndrome have intense and highly focused interests – some channelling them towards a successful career
The billionaire also joked about his son’s unusual name – he and the singer Grimes announced the birth of their first child, X Æ A-12 Musk, last year. “It’s pronounced cat running across keyboard,” Mr Musk said.
Later in the programme, the SpaceX CEO spoke about the cryptocurrency Dogecoin.
The currency was created in 2013 by a pair of software workers, and earlier this year it jumped in value by 50% after Mr Musk dubbed it “the people’s crypto”.
It uses a Shiba Inu dog as its mascot and is based on a meme featuring the animal.
Mr Musk described the currency as “an unstoppable vehicle that’s going to take over the world” – but later said it was a “hustle” which prompted an almost immediate fall in value.
With no intrinsic value like gold or land, and no ability to generate an income, cryptocurrencies are extremely volatile and can crash as fast as they rise. This makes them hard to value and makes their prices susceptible to tips from backers such as Mr Musk.
NBC, which airs SNL, said the episode was streamed live on YouTube to more than 100 countries.
As cases of domestic abuse rise during lockdown, people are forced to spend more time with their abusers. As Sara Cincurova explores, disabled victims can face particular challenges.
“When you are disabled and live with your abuser, you are scared to talk,” says Ebere, a disabled survivor who was abused for years. “Particularly if you are trapped with him at home, or reliant on his money or care.”
Ebere, not her real name, has faced abuse throughout her life.
Born in Nigeria, she contracted polio as a baby and became a wheelchair-user. Her parents considered her disabilities a “curse” and physically and mentally abused her.
“I was treated like nothing. I was beaten up and threatened, unlike my siblings, without disability, who were treated with respect.”
Aged seven, Ebere was sexually assaulted by a family member. But when she tried to report it “my parents told me they would kill me if I spoke about it”. She felt “defenceless”.
‘I thought he was a gentleman’
According to UNICEF, disabled children are four times more likely to experience abuse and three times more likely to experience sexual violence compared to their non-disabled peers.
Eventually, Ebere fled to the UK on a student visa to study social care. “I presumed that I’d escaped abuse forever because I had fled my family,” she says, but it wasn’t to be.
She soon met a man and started a relationship.
“I thought he was a gentleman, a prince charming. But he turned out to be a perpetrator and a gambler. He became controlling and started raping me.
“Experiencing abuse for the second time affected me so much,” she says. “No-one knows what is happening behind those walls. I didn’t want to live anymore.”
Ebere didn’t know how to escape until a friend put a small phone in her incontinence pad so her ex-partner wouldn’t find it. It enabled her to call the police, and her partner was arrested.
But once she was free, she found it difficult to find wheelchair-accessible accommodation. Many refuges had steps into the building or rooms and doorways could be too narrow for her wheelchair. She also struggled to find places which had the resources to support her mental health needs.
“I stayed in hostels, hotels and refuges, but I wasn’t happy. I didn’t feel like there was inclusivity,” she says.
‘I experienced hell’
Slowly, over five years, Ebere rebuilt her life and now has her own home.
“I tell my story because I experienced hell and I don’t want anyone to go through what I had to go through.”
Lauren Avery, from Minority Rights Group International, which protects the rights of minorities says disabled women who have another intersecting identity, such as being a refugee, can face double discrimination.
“Firstly, they face a higher likelihood of experiencing violence. Secondly, they face barriers in reporting violence and accessing services.”
Avery says reports from around the world show violence against disabled women has intensified during lockdown.
Although no figures have yet been compiled, Women’s Aid said, pre-pandemic, disabled women were three times more likely to experience domestic abuse and more likely to experience multiple forms of abuse in their lifetime, compared to non-disabled women.
Avery says these figures need to be reflected in the support available.
“A one size fits all approach is clearly not working,” she says. “All clients should have the opportunity to say what their needs are as soon as they engage with domestic violence services. Then efforts can be made to make adjustments to meet these needs.”
Emma Dalmayne, an autistic woman from London, was 17 years old when she fled domestic abuse with her eight-month-old baby.
“I had been subjected to severe physical abuse, but I was also mentally abused. I wasn’t allowed to look out of the window or to use a phone. But I didn’t realise this was violence,” she says.
“Many autistic people might not realise that you don’t have to be hit to be abused.”
Emma too had to carefully consider how to escape.
“The night before I left, I was subjected to one of the worst beatings. I had made ‘too much noise’ while making my son a bottle in the kitchen and was kicked around on the floor like a football.”
The next morning, Emma went to the Post Office to collect her benefits – the only place she was allowed to go alone. “I hid a spare bottle and two nappies in the buggy, and left together with my son.”
On her way, she called a friend, who in turn called the police. Officers met them on the high street.
“I showed them my injuries, the bruising on my back and chest, and they took us to the local housing department,” Emma says.
When she arrived at the refuge, she sobbed with relief and fear. But she says her autism made the situation confusing and she would have liked more support and “clear instructions” about what to do next.
“The police should accompany you to the refuge, especially if you have difficulty navigating public transport,” she says. “Things should also be made more clear by refuge staff, such as directions to amenities in your new area.”
Emma agrees with Avery that support cannot be a one-size approach, especially if disability is involved.
During her violent relationship she was starved and her stomach had shrunk so she was unable to eat at the refuge. “But no-one asked me about it, and I was unable to communicate,” she says.
For Emma, offering up information without first being asked, is something she struggles with. As a result, she didn’t receive any therapy or treatment.
“Don’t assume that just because someone is verbal, they can communicate. When people look at me, they think ‘she’ll be fine, she can talk, she can explain what happened’. But I couldn’t.”
She says support workers should be trained to support disabled people.
“We might need help with budgeting and we should also see a dietician and a doctor when we are first brought in.
“We need to be put in a safe, quiet room, and be protected from further trauma, noise, and overwhelm,” she says.
Over-stimulation can lead to some autistic people experiencing meltdowns or shutting down.
When she left the refuge, Emma started to advocate for women who had faced domestic violence. She also became CEO of Autistic Inclusive Meets, an organisation focused on creating a community for autistic people.
“This is a matter dear to my heart. As an autistic person, it is so easy to get drawn into a situation where you blame yourself for the abuse. Providing help to disabled people is so important. Love shouldn’t hurt.”
Emma’s tips for escaping abuse
- Pack a bag with essentials like a change of clothes and ID. If a bag is too risky, put the clothing in a pile as “clean washing” and the documents in an envelope taped under a drawer
- Keep a paper list of phone numbers of people you want to keep in contact with
- Pick up any prescriptions or medication before leaving as you will be moved out of area.
- Don’t tell anyone your plans, they may unintentionally slip up
- If you call the police to help you leave, it may save time to head to the police station or meet them nearby
- Wear sensible shoes
- Take one treasured toy for your child – you will not be able to carry much – and any favourite photos – they may be destroyed once you leave
A seven-year-old Belfast schoolboy has been involved in a BBC accessible music project for Deaf Awareness Week 2021.
Jensen Rea, who is deaf in one ear, was asked to be involved in the BBC SignSong after appearing in a BBC News NI video in January.
The Dundonald Primary School pupil helps teach British sign language (BSL), often dressed in elaborate costumes, to other children on YouTube.
The BBC music project, which was recorded remotely over lockdown, involves almost 100 people signing to Sing, a song by Gary Barlow and Andrew Lloyd-Webber.
The video was made in partnership with BBC Ability, Children in Need, the BBC’s Philharmonic Orchestra, BBC Singers and people from across the UK.
You can watch the full version of the BSL SignSong music video here.
The Grenfell Tower landlord did not create escape plans for disabled residents and instead relied on telling people to “stay put” despite recent fires in two of its other towers requiring evacuations, the inquiry into the 2017 disaster has heard.
Teresa Brown, the director of housing at the Kensington and Chelsea Tenant Management Organisation (TMP) from 2014 to 2018, was close to tears when she admitted that the landlord had not considered personal evacuation plans to get the most vulnerable people out.
The “stay put” policy in place at Grenfell Tower has already been identified by the inquiry as increasing the death toll. Fifteen of the 37 residents classed as vulnerable in the block were among the 72 killed.
Brown was questioned about fires in 2015 and 2016 at Adair Tower, a Royal Borough of Kensington and Chelsea council block, and Shepherds Court, in nearby Hammersmith and Fulham, which both required evacuations. Counsel to the inquiry, Andrew Kinnear QC, asked if they prompted her to consider the need for evacuation plans for vulnerable residents elsewhere.
“I’m afraid it didn’t because in my experience the fire brigade arrived and they made the decision to move from stay put to evacuation and it worked,” she said.
Brown said the landlord was following national guidance published by the Local Government Association that said “stay put works”.
“It is easy to look back in hindsight but we were operating according to that guidance in a way that other organisations across the country were,” she said.
Lawyers for the bereaved and survivors have described the fire as “a landmark act of discrimination against disabled and vulnerable people”.
Although 52 of the 120 flats had disabled occupants, a TMO document on the night of the fire only listed 10 disabled residents.
Hisam Choucair, whose mother, Sirria, used a stick and was among six of his family members to die, has told the public inquiry he was “shocked that there does not appear to have been any consideration of my mother’s needs” when it housed her on the 22nd floor.
Mahboubeh Jamalvatan, a disabled mother of two who lived on the third floor, said she had had to bump down the stairs on her bottom to escape.
Kinnear asked if Brown’s team was aware it could refer residents for evaluation of a personal evacuation plan. She said no, adding “because of our stay put policy – we weren’t expecting to evacuate”.
She said the London fire brigade did not raise the need for the evacuation plans at Grenfell, adding: “If they had I would have done it.”
The inquiry saw an internal document about the landlord’s “vulnerability policy” which described the process of drawing up personal emergency evacuation plans as “mainly ad hoc and self-nominated”.
Brown said they did not publicise the fact that residents could ask for a plan. The inquiry continues on Monday.
Dear Editor,
Prioritising your mental health is important whatever your situation, but when you are living with a disability, it’s essential. Post pandemic, many people may be feeling heightened levels of anxiety – the fear of coronavirus and the consequent isolation has meant our mental health has taken a knock. That’s why for this year’s Mental Health Awareness Week (10th – 16th May), Revitalise would like to share with your readers some of the best ways disabled people can look after their mental health.
Keep Active – Exercise is great for the mind, getting yourself moving triggers an endorphin rush to the brain that is almost guaranteed to make you feel happier. We’re not suggesting you run a marathon around your living room, but stretching in the garden or heading outside for some fresh air will do wonders.
Stay Social – As the rest of the world opens back up post-lockdown, many vulnerable people are continuing to isolate. Whilst you might not be able to see friends and family in person, one good thing about 2021 is technology means you can still see them virtually. Make sure to schedule plenty of Zoom catch ups or what about a game of virtual Scrabble with a friend?
Get Creative – Whether it’s reading, writing, playing music, painting or dancing, always celebrate your creativity! Perhaps you’ve always wanted to learn a new skill, or maybe there’s an old passion you’ve let slip – now is the time to focus on it. The arts industry has really suffered over the course of the pandemic, but we’re sure it will bounce back bigger and better than ever.
Take a Break – This might be easier said than done, especially if you have young children or are a family carer but taking some time to rest and refresh is so important – not only for your sake, but for the sake of your loved ones. A hot bath and 20 minutes to yourself will do wonders, and a good book is a great way of escaping reality for half an hour or so too!
Make Friends – If you’re feeling the strain, why not take a well-deserved break with Revitalise and let us help ease the pressure. Our staff and fellow guests are a fantastic and friendly bunch, and by holidaying with us you’ll become part of a community of likeminded people who make you feel at home and able to be completely yourself. Many of our guests return time and time again to reunite with old friends (be that fellow guests, team members or volunteers) and always have fun making new ones along the way too.
Revitalise Sandpipers in Southport is offering discounted rates until the 28th June and can provide accessible transport across the country. So, anyone who feels they could benefit from our support, need only ask.
Devon Prosser, Revitalise
www.revitalise.org.uk
6th May 2021
Prioritising your mental health is important whatever your situation, but when you are living with a disability, it’s essential. Post pandemic, many people may be feeling heightened levels of anxiety – the fear of coronavirus and the consequent isolation has meant our mental health has taken a knock. That’s why for this year’s Mental Health Awareness Week (10th – 16th May), Revitalise would like to share with your readers some of the best ways disabled people can look after their mental health.
Keep Active – Exercise is great for the mind, getting yourself moving triggers an endorphin rush to the brain that is almost guaranteed to make you feel happier. We’re not suggesting you run a marathon around your living room, but stretching in the garden or heading outside for some fresh air will do wonders.
Stay Social – As the rest of the world opens back up post-lockdown, many vulnerable people are continuing to isolate. Whilst you might not be able to see friends and family in person, one good thing about 2021 is technology means you can still see them virtually. Make sure to schedule plenty of Zoom catch ups or what about a game of virtual Scrabble with a friend?
Get Creative – Whether it’s reading, writing, playing music, painting or dancing, always celebrate your creativity! Perhaps you’ve always wanted to learn a new skill, or maybe there’s an old passion you’ve let slip – now is the time to focus on it. The arts industry has really suffered over the course of the pandemic, but we’re sure it will bounce back bigger and better than ever.
Take a Break – This might be easier said than done, especially if you have young children or are a family carer but taking some time to rest and refresh is so important – not only for your sake, but for the sake of your loved ones. A hot bath and 20 minutes to yourself will do wonders, and a good book is a great way of escaping reality for half an hour or so too!
Make Friends – If you’re feeling the strain, why not take a well-deserved break with Revitalise and let us help ease the pressure. Our staff and fellow guests are a fantastic and friendly bunch, and by holidaying with us you’ll become part of a community of likeminded people who make you feel at home and able to be completely yourself. Many of our guests return time and time again to reunite with old friends (be that fellow guests, team members or volunteers) and always have fun making new ones along the way too.
Revitalise Sandpipers in Southport is offering discounted rates until the 28th June and can provide accessible transport across the country. So, anyone who feels they could benefit from our support, need only ask.
Devon Prosser, Revitalise
www.revitalise.org.uk
A severely disabled child who was forced to go into hotel quarantine after returning from a “red list” country has been allowed to return home to complete their period of self-isolation after a legal challenge.
Before entering the UK, the child’s parents had applied for an exemption on medical grounds, providing evidence of their child’s severe and complex needs, but, having received no decision, they had to enter hotel quarantine on arrival. Their solicitors, Bindmans LLP, said the application was then refused without reasoning.
They made an urgent application to the high court for an order permitting the family to return home to complete the quarantine. They provided further evidence from the child’s treating psychologist of why their particular severe needs could not be met in hotel quarantine and how it would probably lead to a severe deterioration in their condition. After seven days stuck in hotel quarantine, the family won their case.Advertisementhttps://a2a64f310b30236a30dc37b7e1a6dca6.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
Theodora Middleton, a solicitor in Bindmans’ public law team, said: “We are pleased that our client has now been permitted to return home. However, it is deeply concerning that highly vulnerable individuals such as our client are being subjected to the hotel quarantine system with little apparent consideration of how it will affect them. Our client and our client’s parents have endured unacceptable suffering, and potentially lasting damage, during the period that they were required to remain at the hotel, and recently updated exemption guidelines set a bar for eligibility for exemption that goes beyond the law.”
She urged the health secretary, Matt Hancock, to “ensure that his newly created and draconian powers to curtail liberty are being exercised with utmost care and scrutiny”.
Under emergency coronavirus legislation, on arrival, passengers entering the UK from “red list” countries are transferred by coach to a hotel where they are required to remain for at least 10 days. They are allowed out of their rooms in “very limited circumstances”, including exercise if granted permission by security guards enforcing the quarantine, with windows reportedly sealed shut.
As well as medical grounds, other exemptions include for people arriving to attend boarding school and representatives of a foreign country.
Bindmans made an application on behalf of its client over the weekend. It said the health secretary was given time to obtain independent medical evidence but did not do so and eventually conceded 15 minutes before a further hearing and three days after being presented with medical evidence form the claimant.
The child’s barrister, Adam Wagner, tweeted: “The system of exemptions for medical need is helpful but only if it is applied reasonably and not, as appears here, raising the bar so high that it is unreachable.”
Campaigners are set to have a review of abortion law relating to Down’s syndrome heard at the High Court.
Heidi Carter, of Coventry, and Máire Lea-Wilson from Brentford, west London, are challenging the government over a clause in the current law which allows abortion for up to birth for a foetus with Down’s syndrome.
Mrs Carter, 25, who has the condition, said the current law is “not fair”.
The case is due to be heard on 6 and 7 July.
Currently, 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” .
Mrs Carter, who campaigns under her given name of Crowter, previously wrote to Health Secretary Matt Hancock saying all non-fatal disabilities should be subject to the same standard 24-week limit.
“A baby without Down’s syndrome can be aborted up to 24 weeks, but a baby like me and James can be aborted to birth,” Mrs Carter said. “It’s downright discrimination.”
“People shouldn’t be treated differently because of their disabilities.
“The reason it’s important to me and James is because we’re someone who has Down’s syndrome and we want to show the world we have a good quality of life.”
Mrs Lea-Wilson, 32, said she was placed under pressure to have an abortion when a 34-week scan revealed her son had Down’s syndrome.
“I have two sons that I love and value equally, but the law does not value them equally,” she said.
“My motivation for taking this joint legal action with Heidi has always been simple. As a mother, I will do all that I can to ensure the fair and equitable treatment of my son, Aidan.”
Mrs Lea-Wilson said the case is “not about the rights or wrongs of abortion” but about “removing a specific instance of inequality of the law.”
Domestic Abuse And Disability: Part One
Emma Dalmayne was just 17-years-old when she fled her abusive partner with her baby. Emma, who is autistic, has experienced violence at the hands of two ex-partners and has lived in a women’s refuge. Saliha Rashid faced honour-based violence from her family. As a blind woman she thought they were being protective, until she went to university and realised their behaviour was abuse. It took her three attempts to escape.
According to the statistics, disabled people are three times more likely to experience domestic abuse – but why is this?
Emma, Saliha and Sara Cincurova, a journalist and former domestic abuse support worker, tell their stories and discuss what needs to be done to improve the situation.
Presented by Keiligh Baker.
If you, or someone you know, have been affected by domestic abuse or violence, the organisations listed on the links below may be able to help. If you are in immediate danger, you should dial 999.
Visit the BBC Action Line page for Information and Support on Domestic Abuse or the BBC Action Line page for honour violence and forced marriage.
Subscribe with BBC Sounds and say to your smart speaker “Ask the BBC for Ouch”
With many thanks to Benefits And Work.
A High Court challenge has been mounted against the failure to give a £20 uplift to claimants of legacy benefits, such as employment support allowance (ESA), in spite of the payment being given to universal credit (UC) claimants. Success could lead to payments of over £1,000 for almost two million ESA claimants.
At the start of the pandemic, the chancellor announced a £20 increase in the standard rate of UC to help claimants cope with the additional costs of the pandemic. This could include such things as face masks, hand sanitiser, home delivery charges and increased utility bills because of being at home continually.
However, claimants on exactly equivalent ‘legacy benefits’ such as ESA were not given the uplift because the DWP claimed that its IT system could not cope with the change.
The case is being brought by two ESA claimants in the support group.
They are arguing that the failure to treat them in the same way as UC claimants is discriminatory and unjustified.
There have been many objections to the discriminatory way the uplift has been applied, including by the chair of the House of Commons Work and Pensions Committee who said:
“It’s simply not right for people to miss out on support just because they happen, through no fault of their own, to be claiming the ‘wrong’ kind of benefit.”
The claimants are being represented by Osborne’s solicitors. You can read the full story on their website.
With many thanks to Benefits And Work.
The DWP document ‘Equality Analysis PIP assessment criteria’ lists over 20 conditions most likely to lead to claimants being eligible for an award of PIP arrears. It gives an insight into who the DWP is likely to be looking at when considering arrears under the LEAP review.
The original estimate by the DWP that 160,000 claimants would be entitled to arrears was based on claimants who scored four points for mobility descriptor 1b – Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant – before the MH judgement and who also had one of the conditions listed below:
- Agoraphobia
- Alcohol misuse
- Anxiety and depressive disorders (mixed)
- Anxiety disorders
- Autism
- Bipolar affective disorder (Hypomania / Mania)
- Cognitive disorders
- Dementia
- Depressive disorder
- Drug misuse
- Learning disability
- Mood disorders
- Obsessive compulsive disorder (OCD
- Panic disorder
- Personality disorder
- Phobias
- Post-traumatic stress disorder (PTSD)
- Psychotic disorders
- Schizoaffective disorder
- Schizophrenia
- Stress reaction disorders
It should be stressed that this was just the DWP’s prediction of who is most likely to be eligible. Just because your condition is not listed here, that does not mean that you are not entitled to a back payment.
Nor, if your condition is listed here does it mean that you are going to get an award. It is clear that the DWP has chosen to make very few awards indeed. At the moment, rather than the over 160,000 awards originally estimated, the DWP is on course to make around 7,000.
However, Benefits and Work is currently looking into ways the LEAP review results can be challenged and we hope to have more information for readers in the coming weeks.
You can download a copy of ‘Equality Analysis PIP Assessment Criteria’
A senior judge has ruled it is lawful for carers in specific circumstances to help clients find and pay for sex.
The ruling found it would be wrong to stop them helping a 27-year-old man with mental disabilities fulfilling a natural desire.
The landmark ruling could have major implications for others.
Ministers have been given permission to appeal the judgment because of its implications for policies on combating prostitution.
The Court of Protection, which made the ruling, is dedicated to taking decisions for people who lack the mental capacity to live independent and safe lives.
The young man at the centre of the case, known only as C, is fit and healthy but lives with carers because he needs daily help with many parts of his life.
He has autism and a genetic disorder – but Mr Justice Hayden said that after speaking to C, he found that he was happy and well-supported.
The court heard that C knew he would probably never find a girlfriend but he nevertheless wanted to experience sex – and so he had asked his carers if they could find him a sex worker who would be paid for their services.
That request led to a hearing at the Court of Protection because it was not clear to C’s carers whether they would act illegally if they agreed to help.
Under England’s complex prostitution laws, paying for sex is a not a crime – but actions that encourage its arrangement are.
C’s carers also feared they could be jailed for up to 10 years for inciting a vulnerable person into a sexual relationship.
In a landmark judgment, Mr Justice Hayden ruled that the aim of sexual offences laws was to prevent abuse, rather than stand in the way of C’s request.
If the law banned the carers from helping C, that would be discrimination because anyone else without his condition could lawfully pay for sex.
“It is important to recognise that those with mental health disorders have, in the past, effectively been prevented, by the law, from engaging in sexual relations,” said the judge.
“It is no longer the objective of the law to prevent people with mental disorders from having sexual relationships, rather it is to criminalise the exploitation and abuse of such adults by those with whom they are in a relationship of trust.”
The judge said that a second legal question – whether a paid sexual relationship would genuinely be in C’s best interests – could only be considered once a specific plan had been devised.
Lawyers for Justice Secretary Robert Buckland are now appealing the ruling. They had argued that granting permission to the carers to help C would undermine attempts to reduce prostitution by using the state’s care services to facilitate it.
But Mr Justice Hayden said the government’s objective was “logically unsustainable”.
“While it is entirely understandable that [secretary of state] would not wish to be seen to act in a way which might be perceived as encouraging prostitution, the fact remains that the act is legal.
“The secretary of state may not obstruct those who wish to participate in lawful transactions nor, logically, those who wish to help them be they carers or otherwise.”
ECB and Lord’s Taverners partnership to make disability cricket accessible in every county
A press release:
A game changing £2m partnership will make life-changing disability cricket accessible in every county in England and Wales as part of the biggest investment into a disability cricket programme.
Launched today (April 27) the landmark partnership between the Lord’s Taverners and the England and Wales Cricket Board (ECB) will see the Super 1s disability cricket programme launched in every county and help develop a more sustainable table cricket offer – increasing participation, inspiring social change, and empowering tens of thousands more young people to fulfil their potential and build life skills through the sport.
Lord’s Taverners President and former England Captain David Gower said: “This partnership is a true game-changer for the Taverners and disability cricket. This is the largest investment by a cricket board into a disability specific programme and to work with the ECB is an incredible honour. The charity’s work has proved life-changing for so many participants and we’re very excited about the opportunity to bring our work to young people in every county across the country.”
Super 1s is already positively impacting the lives of thousands of young people in 20 counties and Scotland – but this will increase to all 39 counties thanks to the collaboration between the UK’s leading youth disability sports charity and cricket’s governing body.
Nick Pryde, Director of Participation and Growth at ECB said: “We’re committed to making cricket as inclusive and diverse as possible and this partnership will be a big driving force towards that. Bringing Super 1s to every county really will change lives. It’s a fantastic way to increase accessibility and show that cricket can be a game for everyone.”
By the end of 2021, new programmes in Worcestershire, Northumberland, Devon, Wiltshire and an Eastern Counties project (Bedfordshire, Hertfordshire, Cambridgeshire) will have been launched with the aim of being active in every county by 2024.
Super 1s, a national Lord’s Taverners programme delivered in conjunction with county cricket boards, gives young people living with a disability the chance to play regular, competitive cricket and giving participants the chance to interact with their peers and enjoy the benefits of playing sport.
But the programme is more than just about playing cricket, it improves physical and mental well-being, gives a sense of belonging and allows participants to make friends and gain skills for life such as confidence and independence.
The partnership will also fund the further development of table cricket which is currently played in 357 schools by over 8,800 young people across the country. The game allows young people with more limiting disabilities the opportunity to engage in cricket, as well as develop a network of young leaders and schools who engage.
Table cricket is an adapted version of cricket played on a table tennis table. Alongside the enjoyment of playing the game and competing, table cricket develops teamwork and social skills among players, while helping with coordination and cognitive skills.
UK’s first digital hub for blind people featuring news, podcasts and the latest bestseller books now available on Alexa
A press release:
From today, blind and visually impaired people across the UK can access the RealSAM Smart Speaker (www.realsam.co.uk) via their Amazon Alexa device. With over 360,000 registered blind adults and children in the UK, the RealSAM digital hub provides visually impaired people with unparalleled access to information and entertainment – supporting their independence and everyday enjoyment.
RealSAM subscribers will benefit from an AI assistant, that guides people through its mass library of content in a way that surpasses the device itself. Subscribers will gain access to the dedicated hub for blind and visually impaired people, providing them with over 27,000 books, newspapers, podcasts, radio stations and content from Calibre Audio – a national charity that lends audiobooks to anyone who is print disabled.
Having launched last month on Google, this technology has received overwhelmingly positive feedback from within the disability community, including those who are unable to lift a book with conditions such as Muscular Dystrophy or being limbless. Furthermore, parents of disabled children have used the wide range of resources in an educational manner in a time of disruption.
Chloe Tear, a disability writer in the UK commented “It’s a great lifeline, especially when adjusting to assistive technology or wanting to get the latest information from sight loss charities. I love the navigation on RealSAM.
“Another great feature is the ability to give more than one command at once. Previously on smart speakers, you would have to ask one thing at a time. I believe this feature will allow visually impaired people to access information at a quicker speed. Not only is this great in general, it puts us more on par with reading speed. Therefore, if audio is your preferred method of accessing things, you’re on to a winner with RealSAM.”
The RealSAM Smart Speaker is clearly valued by such customers and this has culminated in winning at the Digital Book World Awards for Storytelling AI Developer of the Year by Project Voice. Having been recognised for being best best-in-class achievement from across the voice technology and conversational AI landscape, as well as beating the Amazon Alexa, puts RealSAM in a prime position to continue to deliver outstanding work within the remit of accessible technology.
The hub of content is accessed through a fully voice-controlled media skill that once subscribed to, utilises the latest AI technology to improve the independence of those living with visual impairments and sight loss. Activated in exactly the same way as all Alexa ‘skills’, the new platform subscription is available for £19.90 for 12 months’ access for new customers. This price reflects the constant innovation behind the technology as new content and partnership material are continuously being added to further enhance the user experience yet for now the price remains the same.
Sample phrases include:
‘Alexa, open RealSAM. Alexa, find books with title Little Women’.
‘Alexa, open RealSAM. Alexa list podcasts. Alexa, play TED Talks’.
‘Alexa, open RealSAM. Alexa, tell me about Henshaws’.
For more information, please visit www.realsam.co.uk
With many thanks to Benefits And Work.
Some PIP claimants are being left with no payments because their fixed-term award has come to an end before the DWP has made a decision about a new award, a government minister has admitted.
Justin Tomlinson, minister for disabled people, told MPs in a written answer that: “some claimants on fixed term awards without a review date are now falling out of payment before we have been able to make a decision on renewal claims they have made. We are prioritising these cases to ensure we can make a decision as quickly as possible.”
The minister did not give any indication of how many claimants are affected or how soon ‘as quickly as possible’ is likely to be.
You can read the minister’s full answer here.
A press release:
Usability testing by older and disabled people highlights that the majority of apps tested could do more to enable customisation which supports customers with visual or cognitive impairments.
RiDC (The Research Institute for Disabled Consumers), with funding from the Energy Industry Voluntary Redress Scheme has published a consumer guide into the ease-of-use and money-saving features of six popular heating control apps: Hive app, Honeywell home app, Honeywell Total Connect Comfort app, Netamo’s energy app, Nest app and Tado app.
The research included usability testing by ten disabled and older members of RiDC’s consumer panel who were already smart home central heating app users. A concurrent online survey with 633 respondents, also showed that one in four disabled people have difficulties using apps in general, with almost half of these (44%) going on to uninstall or stop using the app because of this.
During the usability testing, each smart home heating control app was tested for accessibility characteristics such as ease of download, ability to customise and responsivity. The team also looked at the app’s ability to save the user energy and money, with features like open-window detection and program modes.
The guide gives an overall rating for accessibility and potential to save energy. It also recommendations of who the app might work well for, according to their disability or specific needs.
The overall accessibility ratings are:
- Hive app (4.4/5)
- Nest app (3.7/5)
- Honeywell home app (3.4/5)
- Netamo’s energy app (3.4/5)
- Honeywell Total Connect Comfort app (3.3/5)
- Tado app (3.1/5)
Gordon Mccullough, CEO at RiDC says:
“Smart-home technology is often championed as a way for disabled and older people to have greater independence at home, which is particularly true for the control of heating and energy use. What’s interesting here is the variation in how much the apps can be customised, which unfortunately means that customers may miss out on being able to use some of the features, including those that have the potential to save energy and money.”
“Inevitably, customers will choose the product which best meets their needs, so we’d love to see other apps exploring how they can make sure their design caters for the different ways that their customers need to use it. Especially this year, where disabled and older people in the UK have been staying at home out of necessity.”
There are 14 million disabled people in the UK, and an aging population means that an increased number of people are likely to become disabled in some way. Some physical conditions and old age make it harder for the body to control body temperature and stay warm when needed.
Dr Wesley Scott, a participant in the user-testing has cerebral palsy and learning disabilities including dyslexia – therefore writing, counting and learning new concepts may prove difficult. He also experiences stress and anxiety. Being at home a lot and having to use more energy, he needs to keep track of how much it’s costing him to heat his flat. A confident smartphone user, his choice of energy provider depends a lot on the usability of their app. Here he shares his experience:
‘I would like it if (when filling in forms) I could speak my email address into it and other details. (Filling it in manually) is tricky because sometimes my hands get spasms and I end up pressing letters or words I don’t want to.’
‘Too many colours make it confusing for me… and the contrast between the background and the writing isn’t very clear.’
Linda has severe arthritis and asthma which means she means she needs more energy to keep her warm. She has dexterity issues with her hands due to the arthritis, wears glasses and is dyslexic. She says:
“I think if you’re young and your brain is very active, you pick up things a lot easier. I can do it eventually but I do have to sit down and think what bit do I need to go to next because it doesn’t actually say ‘Now go to..’ If you change the room temperature for instance, if you’re not careful you’ll change the whole house temperature so it all gets quite complicated.”
“Even now I have to stop and think – how do I change the temperature?”
Users also made suggestions on how the apps could improve accessibility and take up among disabled people.
Each app was user-tested by RiDC’s researchers and members of the consumer panel in November 2020. Individual scores of ease-of-use features represent an indicative interpretation by RiDC of the feedback received from members of the consumer panel rather than scoring by consumer panel members themselves.
Overall, the research found that the Hive app was the only one to perform well in all seven categories, its minimal user-interface and clearly displayed features making it easier to use for most impairment groups.
A full review of each app, along with ratings for each feature are now available to view on the RiDC website.
DWP Admits LEAP Letter Was Untrue
With many thanks to Benefits And Work.
Benefits and Work has been provided with a copy of a letter from the DWP in which a decision maker admits that a review of the claimants PIP award had not been carried out, even though he had received a letter stating that it had.
The claimant received a LEAP letter last year stating that their claim had been looked at again in line with the decisions in the MH and RJ cases and that they were not entitled to any payment of arrears.
The claimant challenged this arguing that they were covered by the MH decision.
The DWP decision maker responded in writing, saying that:
‘Your request for the decision not to be awarded the mobility component to be looked at again when considered in the light of RJ/MH will require a reconsideration which was not carried out for this aspect of your claim.’
The DWP eventually lapsed the appeal by making an award of £12,000 of backdated enhanced PIP mobility component payments.
As in other cases we have seen, this claimant was fortunate enough to have knowledgeable support with their claim. How many other claimants who are entitled to similar substantial sums are missing out because they do not have the same support to challenge false and misleading statements by the DWP?
Over 42,000 Carers Hit With Overpayment Bills
With many thanks to Benefits And Work.
42,400 carers are being forced to repay benefits overpayments, even though very often these were due to failings by the DWP.
Justin Tomlinson, minister for disabled people, told MPs in a written answer that:
“As of 13th April 2021, 42,400 people were repaying Carer’s Allowance overpayments.
“The total original value of those debts was just over £138million; the total amount currently outstanding is £89million.
“The Department has a duty to recover overpaid benefits as quickly and efficiently as possible, but it is not intended that the recovery of an overpayment should cause any customer undue financial hardship.”
However, the National Audit Office found in 2019 that due to high staff turnover, the DWP had 104,000 reports of changes of circumstances in November 2019 in relation to carer’s allowance which it had failed to process. This inevitably led to large overpayments being run up.
Those same claimants are now being penalised for something that was not their fault.
The eagerness of the DWP to recover overpayments of carer’s allowance contrasts with its reluctance to pay out to claimants owed arrears of PIP under the LEAP review.
You can read Tomlinson’s full answer here.
A taxi driver who refused to pick up an assistance dog and abandoned his passenger has had his licence revoked.
Shamal Hussein Majid told the customer the dog could go in his boot but there would be an extra £10 cleaning fee, Wolverhampton City Council said.
He also claimed he was allergic but did not have exemption paperwork and left the “vulnerable” customer, who is registered blind, at the roadside.
Mr Majid lost his appeal at Black Country Magistrates’ Court on Friday.
The council said Mr Majid, from St Andrew’s House in Wolverhampton, refused to carry the customer with a guide dog from Molineux Stadium on 7 March last year.
‘Inexcusable’
He ended up abandoning the customer and drove away in his private hire vehicle, the authority said.
Under the 2010 Equality Act, a driver will have committed an offence if they refuse to carry a disabled person’s dog and allow it to remain with that person. It is also an offence if they make any additional charge for letting the dog remain with the owner.
Chris Howell, the council’s commercial regulation manager, said: “Leaving a vulnerable person at the side of the road is inexcusable and certainly not the high standard that we expect from our licensed drivers who all undergo disability awareness training to ensure they are aware of their legal obligation to carry assistance dogs at no additional charge.
“Where a driver has a medical condition that would prevent them from carrying assistance dogs, this must be independently verified through medical testing and an exemption certificate is issued.”
Mr Majid was also ordered ordered to pay £300 towards the council’s legal costs.
Hope For Anna: Campaigning Mum’s Battle With Tiktok
Former rugby stars Shane Williams and Ben Kay are to join Alan Shearer in lending their weight to the fight against dementia.
Wales’ record tryscorer Williams and World Cup-winning England lock Kay are among 50 elite ex-players to have signed up for the Alzheimer’s Society-funded PREVENT:RFC project, which forms part of the Sport United Against Dementia campaign.
In addition, former England football captain Shearer, who presented the BBC documentary, ‘Alan Shearer: Dementia, Football and Me’ which investigated the link between the game and brain injury, is one of those taking part in an informal pilot study.
Shearer said: “I’ve been following the sport and dementia conversation for years now – and there’s still more I want to learn about the science behind the stories in the news.
“I know the risk of dementia is something that worries many players, so work directed to understanding the earliest stage of dementia is incredibly important, and this study in rugby players will add to our understanding of that in sport.”
The risk of brain injury in footballers has been highlighted in recent years by the deaths of England 1966 World Cup winners Ray Wilson, Martin Peters, Nobby Stiles and Jack Charlton, who had all been living with dementia, and in particular former West Brom striker Jeff Astle, whose daughter Dawn has campaigned for action to address the issue.
Research has suggested that footballers are up to five times more likely to die from Alzheimer’s disease than the general public.
In rugby too, there has been mounting concern with former England hooker Steve Thompson and ex-Wales international Alix Popham among a group of ex-players exploring legal action for alleged negligence against the game’s authorities.
Kay said: “It was really important to me as a rugby player to take part in this study. There has been a lot of media coverage around this topic lately and as a result, I know lots of players are worried about their dementia risk.
“Hopefully, by doing this research now, we can get a better understanding of this issue and make a real difference for the future.”
Last December, former Wales forward Alix Popham and his wife Mel described the impact early onset dementia has had on their lives following his diagnosis
Forecasts suggest the number of people with dementia in the United Kingdom will rise to one million by 2025, and 700 volunteers are already involved in the UK and Ireland-wide PREVENT research project, under which they will be assessed via physical health checks, brain scans, memory assessments, lifestyle questionnaires and sample collections over a two-year period.
PREVENT:RFC, which is backed by an additional £250,000 from the Alzheimer’s Society, is one strand of the Sport United Against Dementia campaign, seeking to improve the lives of current and former players and fans and will be based in Edinburgh under the charge of principal investigator Professor Craig Ritchie, who will work alongside Professor Willie Stewart from the University of Glasgow.
Kay’s World Cup-winning team-mate Steve Thompson said last year that a lack of care for player welfare could be one of the reasons he can’t remember the playing in the final
Professor Stewart said: “It is vitally important we better understand the links between sports such as football and rugby and dementia, so we can better protect players from any risks they may face.
“Previous research led by our team at the University of Glasgow demonstrated the increased risk of neurodegenerative disease in former professional football players.
“I am delighted to be a part of this latest PREVENT study into professional rugby players, and the adjoining pilot looking at professional football players, so we can bring more insight to this important research area.”
Sound Of Metal Wins Two Oscars!
Sound Of Metal has won two of the six Oscars the film was nominated for.
They are sadly not the most high profile awards of the group but any win is still a win.
The film won the awards for Best Film Editing and, ironically considering it’s storyline of a deaf drummer, for Best Sound.
Same Difference sincerely congratulates the cast and crew and wishes then every success when the film is finally released in cinemas on May 17th.
In other disability related Oscar news, the award for Best Actor went to Sir Anthony Hopkins for playing a man living with dementia in The Father, which also won the award for Best Adapted Screenplay. Same Difference sincerely congratulates the whole cast and crew of The Father and wishes the film every success in cinemas.
The Bafta-winning film Sound of Metal dramatises every musician’s worst nightmare. Ruben Stone, played by Riz Ahmed – who is up for a best actor Oscar this weekend – is a metal drummer who loses his hearing, and the film depicts Ruben’s loss exactly as he hears it, where the world around him and the intense music he plays suddenly fade to a muted and distorted drone.
These scary and involving scenes have highlighted a crisis in hearing damage right across the music industry, be it through deafness or tinnitus (a constant ringing in the ears). In a report published last month by the British Tinnitus Association (BTA), over half of the 74 tinnitus-suffering musicians surveyed said they developed the condition due to noise exposure, but nearly a quarter said they never wore hearing protection.
In 2002, before Myles Kennedy went on to front the hugely successful US hard rock band Alter Bridge – their last two albums have gone Top 5 in the UK – he was diagnosed with tinnitus. Kennedy had been playing in bands since the mid-80s and working with high levels of sound in his home studio. After his diagnosis, he left the music business for 18 months.
“I thought my days were numbered as a musician,” Myles says. “I stopped playing live and went back to teaching guitar.” When Guns N’ Roses guitarist Slash asked Myles to audition for the supergroup that would become Velvet Revolver, he declined. “I was concerned about my hearing,” Myles says. “The fear that it could get worse was the thing for me: how bad is this gonna get?”
“For a musician, losing your hearing is like losing a hand,” says Steve Lukather of Toto, who developed tinnitus in 1986 and also suffers from hearing loss. Hearing aids mean that Steve can continue his career, but watching Sound of Metal hit close to home. “The movie disturbed me,” he says. “I know what it’s like to be all muffled up like that. It’s terrifying – and a very real problem.”
“Noise-induced hearing loss and tinnitus usually occur over a period of time, starting with temporary changes that may initially recover,” says BTA president Tony Kay. “This may become permanent if continued exposure to noise without adequate protection persists. If the noise is loud enough, permanent changes can occur after one exposure.”
For Amos Williams, bassist in metal band Tesseract, his tinnitus began as a teenager, while playing drums in bands and percussion in the school orchestra. “The severity of not having hearing protection was never expressed to me,” Amos says. “[The ringing] was almost expected when you’re playing or attending rock and metal shows. It got progressively worse – and now there’s no such thing as silence.”
“No one used to talk about wearing earplugs,” says Lisa Cope, who works for a record label and has hearing damage and tinnitus after years of tour managing. “I can’t hear anything under a certain decibel, and when I get stressed the tinnitus becomes like a chorus of crickets.”
Tinnitus can be debilitating, both physically and psychologically, and it’s usually in quiet moments that it screams the loudest: many sufferers say it’s worst when going to bed. “I can’t sleep without a podcast on,” says Dan Smith, bassist in extreme metal band Calligram. “When I listen to quieter music on headphones, I can hear my tinnitus over the music.”
For those who work in music, there is the additional worry that it could affect their livelihood. Singer-songwriter Rosalie Cunningham experienced mild distortion in her ears in the past, but after contracting Covid, her symptoms worsened. Now, the prospect of returning to live shows is a concern: “I’m terrified that something will happen on stage, and I won’t know what to do,” she says.
“I used to worry that people would think I couldn’t do my job,” says Eleanor Goodman, deputy editor of Metal Hammer magazine. “But when I started talking about it, I found out that tinnitus is very common in the music industry. Being open about it has been so much better.”
Hearing protection is key – even if you already have tinnitus. “People can think, I’ve done the damage, I’ll just carry on,” says Georgina Burns-O’Connell, lead author of the BTA report. “But that can do more damage.”
In 2016, Help Musicians started the Musicians Hearing Health Scheme in partnership with the Musicians’ Union, which gives musicians access to hearing assessments and moulded earplugs at a reduced cost. “Musicians should care as much for their hearing as they do for their instrument,” says James Ainscough, the charity’s chief executive. So far, the scheme has helped over 12,000 people.
There are also services that offer mental health support, such as Music Minds Matter, and the BTA recently established monthly support groups specifically for musicians. “While there isn’t a cure, there are ways to manage tinnitus, and to live well with it,” says Burns-O’Connell.
Those affected say there are techniques that have helped them – including wearing in-ear monitors and moulded earplugs, staying hydrated, avoiding stress, using podcasts and music as distraction, and support groups and therapy. “CBT put me on a positive path,” says Michael Daniels, a trumpet player, conductor and educator who works in a variety of styles from classical and choral to big band and jazz. “Mindfulness has also been very helpful for me: it’s a way of coming to terms with what’s going on.”
Around two years after his tinnitus diagnosis, Myles Kennedy joined Alter Bridge and went on to tour arenas around the world. Through techniques like meditation and the advanced technology of in-ear monitors, his condition no longer holds him back.
“The tinnitus forced me to take care of my hearing,” says Myles. “Twenty years from now, if we have this same discussion, I want to be able to hear everything you’re saying. I had to learn how to shut off that anxiety, to stop obsessing – it took a long time to get to that point. The in-ear monitors mean that I can continue doing what I love, without doing more damage. I’m so grateful – I can’t imagine a life not making music.”
SEND Coffee
A friend of Same Difference recently found and shared the following:
We hire and help people with special needs or Disabilities
into jobs in the coffee industry. As Coffee Roasters, we have access to a wide network of employers who are always looking for good staff.
Providing 1:1 Mentoring over 36 weeks, we offer a barista course like no other. We believe that our learners can’t just enter the job market at the bottom rung, but have to be equipped with skills to overcome the prejudice they’ll experience.
We are currently running our training program from 3 sites: Clarnico Club (Hackney Wick), Curators Coffee (Leadenhall Market) and Hidden (Camden).
Supporting Can Be Simple
There are multiple ways you can support us and our mission.
- Buying ethically, from companies registered with Social Enterprises UK encourages people to think about the ethics of the companies they are supporting.
- Buying coffee from anywhere stocking our beans directly supports our learners into employment, and provides a charity with the money they desperately need to support more beneficiaries. 100% of our profits go to our mentor charity.
- Stocking our coffee at your business in any capacity promotes awareness for people with disabilities and neurodiversity, supporting the inclusivity of the industry as a whole. It also provides you with great coffee and customers with an ethical option.
- Taking our learners on as staff after their course might provide you with a dream member of staff. With us backing them, they have the advantage of access to a team of extremely experienced mentors who continue their support long after the course ends.
- Become a mentor site. This is the ultimate partnership, and comes with huge benefits to your business. We provide a full time dream member of staff, who will work in your shop fully paid by us, but will have a learner shadowing them and learning the job 4 days a week. This is something we usually only offer to people we have already partnered with as wholesale customers and meet our suitability criteria.
Bristol Man Says Sight Loss Means He Cannot Find A Job
A man who began losing his sight six years ago says he has struggled to find work despite applying for more than 100 jobs.
Brett Francis, from Kingswood, Bristol, left his last job in 2015 just before his eyesight began to deteriorate.
He says nobody wants to employ him now because of his disability.
The Royal National Institute of Blind People (RNIB) says employment chances for blind and partially-sighted people are a long-standing issue.
Mr Francis, 33, says he has not even been invited for an interview despite all of his job applications.
“I tick the box on the paperwork that says I’m disabled and then I hear nothing back,” he said.
“They [employers] are pretty vague. They just say ‘thank you for your time but you’ve not been successful’.”
Having applied for jobs in areas such as retail, sport, call handler centres and offices, he said he can only assume his vision is the reason.
“I don’t really know [why] but I’m putting it down to my eyesight,” Mr Francis said.
“There could be me and somebody who has no sight loss and I believe they would employ that person because there’s no issue that they need to cater for.”
“I’m not saying I could do any job, but there are a lot of roles I could do,” Mr Francis added.
“Obviously I need some extra help, I need some adaptations, but I’m willing to put the effort in.
“But to show what I’m capable of I need that chance and nobody is willing to put themselves out there to help me.”
Alice Archer, from Bristol-based RNIB, said Mr Francis’ situation was “unfortunately” typical and only one in four blind or partially-sighted people were in work, a statistic that has remained largely the same for 20 years.
“We speak to a lot of people who are in a similar situation to Brett where they’ve got lots of skills, they’ve got lots of experience and they’ve got lots of enthusiasm that they want to offer a workplace but they’re just not finding employers who are willing to give them a chance,” she said.
Able To Parent
Emily Yates and her partner Christopher ‘ CJ’ Johnston have been together four years. CJ really wants a baby but Emily – a wheelchair-user with Cerebral Palsy – has fears and barriers that she feels she needs to overcome.
Will she be able to carry a baby? What extra strain will her disability put on her and CJ’s relationship as parents? What impact will her disability have on their child as he or she grows up?
To help quell these concerns and make a final decision, the couple look around them for advice and inspiration. They meet Kelly, a powerchair-user and mum to two boys, who offers practical advice on handling trickier situations. Megan was raised by a paraplegic mother and gives a child’s perspective, while the artist Alison Lapper – arguably Britain’s highest-profile disabled parent – shares her story, including the astonishing level of vitriol she received during her pregnancy. In 2019, Alison’s son Parys tragically died of an accidental drug overdose. How will this experience colour Alison’s advice to Emily and CJ?
As they explore all this together, Emily increasingly realises that many of the barriers she faces are ones of perception rather than practicality.
A woman with learning disabilities and her family have spoken of their relief at being prioritised in the coronavirus vaccination programme.
Helen Illsley, who was born with brain damage, said she hoped to see her boyfriend, go shopping and go on holiday, after having the vaccination at a Nottingham clinic which has been tailored to put people with learning disabilities at ease.
The family praised DJ Jo Whiley, who campaigned for people with learning disabilities to be prioritised in the vaccine rollout.
Ms Illsley’s mum Sarah said: “We campaigned long and hard for learning disabled people to be prioritised and it was a great relief when Jo Whiley came on board and really swung the change.”
Great Britain wheelchair basketball player Amy Conroy believes the new Women’s Premier League will be “massive” for the sport.
British Wheelchair Basketball says it will be “the first of its kind for women’s wheelchair basketball in the world, and the very first professional Para-sport league in the UK”.
Four teams will be involved in the first season, to start in December.
“I can’t wait to see where it will take our sport,” said Paralympian Conroy.
“It sends out a massive message and shows female sport is up and coming. I never thought something as big as this would happen during my career.
“Hopefully it will mean more fans, more visibility and more players with disabilities at both recreational and international level. The opportunities will be endless.”
As well as attracting the best domestic players, it is hoped the league, which will have teams based at Cardiff Metropolitan University, Loughborough University, University of East London and University of Worcester, will also attract some of the world’s top women players.
Players will not be paid directly by their respective clubs; instead, each franchise will offer different packages to athletes, including scholarships, accommodation and expenses support, and access to full-time professional support teams.
Great Britain’s women are currently ranked second in the world after winning silver at the 2018 World Championships in Germany and the 2019 Europeans.
They have qualified for the rescheduled Tokyo Games later this year where they will be chasing a first Paralympic medal after finishing fourth at Rio 2016.
At present, many elite male players, including most of the GB men’s squad, play professionally in countries including Spain, Italy and Germany, and while women can line up alongside them on mixed teams, British Wheelchair Basketball chief executive Lisa Pearce told BBC Sport she believes the new league’s all-female environment will be a big draw.
“The women’s league doesn’t exist anywhere in the world,” she said. “This is the first showcase for them to bring the sport to the rest of the world and there is a real passion behind women’s sport in the UK.”
“The GB women are number two in the world. We want to get them to number one and this is the best mechanism to do it.”
The Disabled Doctors Not Believed By Their Colleagues
People often feel nervous when they visit a doctor with some fearing their symptoms may not be believed. But what if you are the doctor, and your colleagues dismiss your disabilities and mental health difficulties? Miranda Schreiber explores this challenging relationship.
When I was 15, I described what turned out to be the neurological symptoms of mental illness to my doctor. I told him I couldn’t do schoolwork, feel the cold, or understand a book. He suggested I go on walks if I was stressed.
This breakdown in communication, in which patient and doctor seem to live in different worlds, is well-documented by disabled people. Many feel they have to translate their experience, because disability and medical structures seem incompatible.
But this experience is familiar to disabled doctors too, and some are seeking solutions.
Sarah Islam was a fourth year medical student at Indiana University when she developed a chronic illness which caused exhaustion, chronic pain, and cognitive impairment. She said her symptoms, which didn’t tick a specific box, made her feel like she lacked fluency in the medical language she was learning.
‘Brick wall’
“I remember, even as a med student, having the vocabulary to explain what I was going through but feeling like I had hit a brick wall,” she says. “I actually didn’t know how to describe it.”
With her experience of sickness, Islam shifted from believing legitimate illness could be diagnosed to living as a patient with symptoms which didn’t fit a clear disease profile.
But she noticed a change in her colleagues too, when she returned to medical school after a period of recovery.
“If I said the word ‘pain’ [colleagues] took it as coded language for ‘I’m lazy’ and ‘I can’t do my work’.
“They would challenge my reality,” she says, something which led her to conceal her symptoms. “I felt like everything I shared was going to be weaponized against me. They would say ‘you walked two days ago so why can’t you walk today?’ Almost like they caught me in a lie.
“The baseline understanding of what it means to be disabled is not there.”
This sort of discrimination is often referred to as ableism – which favours non-disabled people over those with disabilities.
It is made all the harder to confront in medicine when disabled clinicians are vastly underrepresented. Disabled people make up about 20% of the population in the UK and US but only 2% of British and American doctors.
Islam says simple accommodations like taking notes in front of patients, or taking the elevator rather than the stairs, were criticised by her advisors as unprofessional. And these same attitudes, Islam explains, manifest in patient interviews.
“It’s completely baffling to me how we can expect patients to respect us when we won’t even believe what they’re telling us.
“It’s scary to be viewed as good or bad because you can or cannot work,” she says.
Hardeep Lotay, a fifth year medical student at the University of Cambridge and mental health advocate, sympathises with Islam. “There’s the idea in medicine you have to stretch yourself further than is reasonable because that’s the nature of the profession,” Lotay says, who also researches medical racism.
“I took a year-and-a-bit out from the course. In medical school any difference is seen as weakness, and any weakness is taken to mean you’re not as good as your cohort. There’s stigma in everyone knowing you’ve taken time off.
“It can be very negative to see the perception of psychiatry patients from your colleagues and seniors.”
The attitudes Lotay and Islam experienced were also identified in research by Drs. Havi Carel and Ian Kidd, philosophy professors at the University of Bristol and University of Nottingham.
They found medical experts often perceive disabled patients as incapable, unreliable, and emotionally unstable, leading clinicians to “downgrade the credibility” of what disabled patients say.
This discrimination can impact treatment decisions and compromise disabled patients’ health, increasing their risk of secondary conditions.
‘Gaslighting the patient’
Revealingly, Canada Care Connection, which helps patients find family doctors, found in its team audits that patients with chronic pain took the longest to place, and that some family doctors refused to see “undesirable” patients because of a disability. “They just won’t accept them,” one Care Connector wrote.
Joanna, a disability activist from New Jersey, has mast cell activation syndrome. The disorder causes overactive mast cells – which form part of the immune system – which trigger anaphylaxis. Joanna lived without medical support until she was 25 because doctors believed she was exaggerating her symptoms.
“I wish medical students were taught to be open to information disabled patients provide,” she says. “It’s okay for a medical student or doctor to admit that they don’t have the answer. That’s so much more helpful than gaslighting the patient.”
This is something the University of Michigan is trying to address. Its medical school has started providing students with teaching sessions focused on disability in its entirety – from disability pride to the everyday and justice.
But there are also the disabled activists, medical students and doctors who propose that the breakdown in communication could be reduced if there were more disabled physicians.
“As a disability activist who’s proud of being disabled, there’s a vocabulary of identity that I can’t use with doctors,” says Charis Hill, an activist from Sacramento, California. “They think disability is bad. It’s what they want to keep you from becoming.
“With a disabled doctor I wouldn’t have to explain so much because we’re speaking the same language,” they say. “My care outcomes would be so much better because I would be understood.”
Lotay and Islam have both used their personal experience to guide the way they approach medicine.
“If a patient comes to you and tells you they’re completely deflated, you can communicate with them and speak a language of mental health,” says Lotay.
Dr. Duncan Shrewsbury, a clinician and senior lecturer at Brighton and Sussex Medical School who has ADHD, agrees.
“We should be systematically looking at how we support and advocate for disabled learners, both at university and postgraduate training levels,” he says.
“It wasn’t until disabled people chained themselves to the front of a bus [in the UK] that disability legislation started looking at public services needing to cater to people with different abilities,” he says, reflecting on the 1995 protests for disability rights.
The University of Michigan has also tried to address barriers by altering its technical standards for admission. Disabled applicants no longer need to demonstrate physical competencies, like being able to lift a patient.
But Islam observes that practicing medicine is only part of the challenge.
“The barriers start before any of us even apply,” she says. “If this had happened to me when I was 17 I probably wouldn’t have had the energy, or the finances frankly, to apply. It’s clear you are not the person wanted in this field.”
But with systemic change, things could be different.
The experiences I described to my doctor when I was 15 did not need to be beyond understanding.
Perhaps, rather than recommend I go on walks, my doctor might have said: “I have felt the same way.”
Disabled residents of Grenfell Tower have told a public inquiry that no-one discussed with them how to escape the 24-storey building in an emergency.
One woman said it took her 30 minutes to walk down from her 20th floor flat when lifts were not working.
Lawyers for residents and the bereaved have called the fire in June 2017 “a landmark act of discrimination” against disabled people.
It killed 72 people, including 41% of the tower’s vulnerable adults.
As part of phase two of the inquiry, examining how the building was managed, disabled residents told how they had no escape routes in an emergency and how many of them struggled to access their own homes when lifts were broken.
On one occasion, Corinne Jones said she had to carry her son on her back, all the way down the stairs from her 17th floor flat.
Months earlier she had warned the council, the Royal Borough of Kensington and Chelsea, that her son had mobility issues due to an autoimmune condition – and they had assured her there would always be a working lift available.
But she said she did not complain to them or the Tenant Management Organisation which ran the building on the council’s behalf, because they had never responded to previous complaints and she found them insensitive.
‘Price tag on our lives’
Emma O’Connor ticked a box to say she had a disability when she moved into a 20th floor flat in Grenfell Tower in 2012, because she needed support to walk.
Staff from the Tenant Management Organisation did not discuss how she should evacuate the building in the event of a fire, she said.
She said it took her 30 minutes to walk down the stairs and when the lifts were broken she sometimes had to stay with family until they were repaired.
Ms O’Connor said the Tenant Management Organisation only gave them selective information about the refurbishment, were unresponsive to complaints and “rude” to residents.
At the end of her evidence, she said: “I don’t think it’s fair that these corporate companies were given the choice to choose what the price tag on our lives should be.”
Mahboubeh Jamalvatan, who lived on the third floor, also said she had never been given any instruction on fire safety. On the night of the disaster, she had to slide, step-by-step, down the stairs on her bottom because she was unable to walk.
Maher Khoudair, who used crutches after contracting polio as a child, said there was no escape route with disabled access from the ninth floor flat where he lived with his wife and three daughters.
The only route he could take was the stairs, and no-one explained to him what to do in a fire when he moved in.
Hisam Choucair said his mother, Sirria, lived on the 22nd floor and used a walking stick due to a bad back.
A personal evacuation plan was never made for her, he said. She died in the fire.
‘No point’ asking for help
The inquiry also heard that as people living in the tower became more frustrated with the poor quality of the refurbishment, in which dangerously flammable cladding was installed, the Tenant Management Organisation decided to scrap regular residents’ meetings.
In a witness statement, project manager Claire Williams said “meetings could become difficult with disruptive conduct from a small number of residents”.
Nurse Betty Kasote said she felt she had been branded a “troublemaker” when she tried to get leaks in her flat fixed, but she said she did not recall anyone being disruptive.
Rosita Boniface, who lived on the 11th floor of the tower for 36 years, said she had never heard a fire drill there.
She said she had not asked the Tenant Management Organisation for an evacuation plan for her husband, who is blind “because I did not think they would care”.
“It was always a struggle to get them to respond to my complaints, so I felt that there was no point going to them for help,” she said.
With many thanks to Benefits And Work.
The DWP have sent out up to a million misleading letters designed prevent tens of thousands of potentially eligible PIP claimants receiving thousands of pounds each in arrears. The letters are very probably unlawful, both in terms of properly informing claimants of a legal decision and in terms of breaching the General Data Protection Regulation (GDPR).
The LEAP review
In a decision known as MH, it was found that the DWP had been misapplying the law in relation to overwhelming psychological distress and following the route of a journey.
Claimants should be awarded the standard rate of PIP mobility if, because of overwhelming psychological distress, they need someone with them to follow the route of an unfamiliar journey.
And they should be awarded the enhanced rate if they cannot follow the route of a familiar journey without having someone with them, for the same reason.
Journeys on foot, by car or on public transport should all be taken into account.
Instead the DWP had been awarding just 4 points, not enough for any award of the mobility component at all.
The LEAP review, which also relates to another case called RJ in which the DWP was found to have got the law wrong in relation to safety and supervision, was set up to identify claimants who should be getting more money.
Before LEAP, when the DWP was trying to change the law in its favour, it had estimated that almost 1 in 7 claimants might be affected by the MH decision.
Yet between June 2018 and January 2020 only around 1 in 200 claimants got an award under LEAP.
And for the following year, up to January 2021, that proportion dropped to just over 1 in 1,000.
By January of this year almost 900,000 claimants had been assessed under LEAP, with just 3,700 getting an award in relation to MH. By now, over a million are likely to have been processed.
So the main job of the LEAP letter, which each reviewed claimant should have received, appears to be to prevent them understanding and challenging the decision to award them nothing.
Misleading title
The title of the letter seems designed to encourage recipients to stop reading and bin it immediately. It reads:
Personal Independence Payment
Changes in PIP law – we have looked again at your PIP and it has not changed
How many claimants who are actually due thousands of pounds in arrears never get further than that paragraph?
Many claimants are thrown into a state of panic whenever they get a brown envelope from the DWP. It may take them days to pluck up the courage to open it. And the MH decision this letter largely relates to is about people who experience overwhelming psychological distress.
The incredible relief at reading that nothing has changed, in large letters at the very top, may be all that many claimants register before throwing the letter away.
A lucky escape
The letter goes on to turn a positive change in the law into a frightening possibility that you could have had your PIP removed:
There have been some changes in Personal independence Payment (PIP) law that affect how the Department for Work and Pensions decides PIP claims.
We are looking again at PIP claims to find out which ones are affected.
This letter explains if and how these changes affect you.
There have indeed been changes in the law.
And anyone affected by those changes is entitled to more money and potentially thousands of pounds in arrears. Absolutely nobody will lose money because of them.
But if the DWP had said that, people might have wanted to find out more.
So, the letter keeps quiet about the changes all being in the claimant’s favour and leaves the reader feeling like they have had a lucky escape.
No explanation
The DWP go on to say:
This letter explains if and how these changes affect you.
These changes are to do with:
How we assess someone’s ability to plan and follow a journey
How we decide whether someone can carry out an activity safely or not, and whether they need supervision
There is more information about these changes towards the end of this letter and at www.gov.uk/dwp/pip-changes
So, if you actually do want to know what these changes are, all you’ve got so far in connection with the MH case is ‘These changes are to do with: How we assess someone’s ability to plan and follow a journey’
If you go to the end of the letter, as instructed, you will read:
MH v DWP tribunal judgement. This relates to how ‘overwhelming psychological distress’ is considered when assessing the ability of someone to plan and follow a journey. This change applies from 28 November 2016.
Which still tells you nothing about how the law has changed and how it might affect you.
Bewildering link
If you have internet access, you can type out that link in the letter to be taken to more information online.
But when you get to the linked page, you’ll be faced with a list of five different changes.
The very last one is headed: Overwhelming psychological distress and journeys: changes to PIP law from 28 November 2016
On this page you will discover that changes to the law mean that:
“We are looking at all current PIP claims to check if this change means you may be eligible for more support under PIP.”
So, finally, you’ve learnt that the change means you might be entitled to more, not less, money. Something the DWP chose not to tell you in the letter.
There is still no explanation of what the change in the law actually is, however.
But there is a link to an Upper Tribunal judgment on overwhelming psychological distress and journeys.
The link takes you to an incredibly dense 700 word summary of the MH decision.
Most people would struggle to understand that summary.
There is then a link to the full decision. However, that is 21 pages long and, again, most people not practised in reading legal decisions would struggle to follow it.
So, the truth is, most people receiving the LEAP letter have no way of being able to tell whether they are affected by the change in the law or not.
It is a tactic that has clearly worked.
We heard from people in our survey who definitely did not understand what the letter was about:
Didn’t know what the letter meant until I’ve read this news letter
Didn’t really understand stand what the letter meant had no one to help me
And so far we have heard from just three people, out of one million, who have actually challenged the decision in the LEAP letter. In each case the DWP caved in and paid what was owed.
Too complex
We suspect the DWP will argue that the legal concept in MH is much too complex to explain in simple terms.
Yet, something as simple as the following would have made a huge difference:
In a decision known as MH, it was found that the we had been getting the law wrong in relation to overwhelming psychological distress and following the route of a journey.
Claimants should have been awarded the standard rate of PIP mobility if, because of overwhelming psychological distress, they needed someone with them to follow the route of an unfamiliar journey.
And they should have been awarded the enhanced rate if they could not follow the route of a familiar journey without having someone with them for the same reason.
Instead we had been awarding just 4 points, not enough for any award of the mobility component at all.
It may not be perfect, but it’s still gives a reasonable idea of who benefits.
The DWP employ people whose full-time job is to write clear information, yet no attempt was made to explain this decision.
Error of law
There are more things that make this letter utterly unfit for purpose.
The letter doesn’t tell you what evidence in your PIP claim or claims they considered. Claim form, assessment report, additional evidence? If there was more than one claim did they still have the evidence from the earlier claims? Without this information, how can you know if they considered all the evidence that they should have?
The letter says they looked at ‘any new information you provided at my request’ but we haven’t heard of a single person actually being asked to provide additional evidence prior to a decision.
The reality is that because the DWP didn’t consider that extreme psychological distress in the course of a journey was relevant to a PIP claim, they had no reason to collect or record information about it occurring. So, almost by definition, without gathering new evidence their decisions were flawed.
No reasons are given for why it was decided you personally were not affected by the changes in the law, so how can you tell if the decision was correct? For example, it doesn’t say something like ‘We decided that although you experience psychological distress, it is not overwhelming.’
All these failings mean that the way the decision was reached and communicated may amount to an official error.
The sting in the tail
There’s one more deceptive stunt the DWP pull.
In the letter, above the signature, you are not told that you have the right to challenge this decision via mandatory reconsideration and appeal.
Instead, that information is relegated to a separate page of ‘bumph’, where there is also generic text about other benefits and changes of circumstances.
There are details about how to get advice on debt and savings from the Money Advice Service, but no mention of how to get help from an advice agency with challenging the decision in the letter.
Does hiding this information about appeal rights on a separate page after the end of the letter work?
Definitely.
In our survey we heard from people who said they had no idea that they could challenge the decision.
I didn’t realise I could argue this at that point in time. I basically just put it away and ignored it.
I did not know that I was able to challenge the decision and would not have been sure how to anyway.
Were humans involved?
There’s another thing about this whole process that may render it unlawful.
We very strongly suspect that most of these decisions have been made not by a decision maker, but by a computer algorithm. Hence the lack of any personalised text in the entire letter, other than names and dates of awards pulled by software from a database.
Though even here the DWP try a sneaky trick by including a list of the points you scored at your last assessment on a separate sheet, to make it look like the decision is specific to you.
But it’s not, that information is just pulled from another database by more software.
In reality, this document is just a standard letter, without a single word about your particular circumstances and why they don’t entitle you to more points.
If it is true that most of these decisions were made via Automated Decision Making (ADM) without any meaningful involvement by a person qualified to make them, then they are very probably in breach of the General Data Protection Regulation (GDPR).
Which might make the entire review of 1.6 million claimants unlawful.
So, don’t expect the DWP to come clean about what they’ve been up to.
It will take a lot of pressure from organisations much more influential than Benefits and Work to get to the bottom of this.
But, we’ve begun the task by making Freedom of Information requests to find out more. And we’re doing our best to spread the word.
The DWP haven’t got away scot free yet.
The LEAP letter text in full
[Below is the text of the LEAP letters we have seen. But we have only seen four letters so far and we are aware there may be different versions. Please let us know if you have one at admin@benefitsandwork.co.uk )
Personal Independence Payment
Changes in PIP law – We have looked again at your PIP and it has not changed
Dear [insert claimant name],
There have been some changes in Personal independence Payment (PIP) law that affect how the Department for Work and Pensions decides PIP claims.
We are looking again at PIP claims to find out which ones are affected.
This letter explains if and how these changes affect you.
These changes are to do with:
- How we assess someone’s ability to plan and follow a journey
- How we decide whether someone can carry out an activity safely or not, and whether they need supervision
There is more information about these changes towards the end of this letter and at http://www.gov.uk/dwp/pip-changes
About your PIP
I have looked again at your award before [insert decision date] and it is not affected.
If you think it could be affected by these changes in PIP law, please phone or write to us using the details at the top of this letter.
Your PIP award from [insert decision date] is correct. This is because these changes in PIP law were taken into consideration when deciding your award from that date.
For your information, a copy of your last set of scores for your PIP is included with this letter.
Your payments
These changes in law do not change the amount of PIP you are getting.
What I did
I looked again at the information we have on your PIP claim(s) including any new information you provided at my request.
Why I looked again at your PIP claim(s)
I looked again at all your PIP claim(s) that may be affected because of the following changes in the law on how PIP claims are decided.
MH v DWP tribunal judgement. This relates to how ‘overwhelming psychological distress’ is considered when assessing the ability of someone to plan and follow a journey. This change applies from 28 November 2016.
RJ v DWP tribunal judgement. This relates to how we decide whether a claimant can carry out an activity safely. It also relates to how we decide if a claimant needs supervision. We now consider the seriousness of any harm that might happen, as well as the likelihood of it happening. Supervision is a need for the continuous presence of another person to prevent harm happening to the person who is claiming PIP or another person. This change applies from 9 March 2017.
For more information about these changes go to
Yours sincerely
[print name]
Campaigning Charity Z2K Asks For Your Views
With many thanks to Benefits And Work.
Campaigning anti-poverty charity Z2K is asking claimants to share their experience of disability benefits assessments as they try to put pressure on the government to make changes.
Readers may remember Z2K as the charity that reported the DWP to the Advertising Standards Authority (ASA) over its fake news items on universal credit. The ASA subsequently found against the DWP and they have not repeated that particular form of deception.
Now Z2K is trying to put pressure on the government to get on with their long-delayed Health and Disability Green Paper, which is supposed to be looking at how to improve support for people on disability benefits.
Z2K wants you to tell them about your experiences of PIP assessments and work capability assessments to help them explain where benefits assessments need to be changed and why the Green Paper is urgent.
The closing date for taking part in the survey is 28 April.
You can find Z2K the survey here
A Scottish woman who lost her speech after developing motor neurone disease (MND) has had it reconstructed using sounds from her appearance on the ITV gameshow Tipping Point.
Helen Whitelaw appeared on the show in 2019, winning almost £3,000.
She was diagnosed with MND the following year, after which her speech rapidly deteriorated.
But engineers took the audio of the 76-year-old’s TV appearance and used it to build her voice into a computer aid.
Ms Whitelaw of Glasgow has thanked them for “giving me back my voice”.
Tipping Point, which first aired in 2012, finds contestants answering general knowledge questions in order to win counters which they use on a large coin pusher machine.
“The diagnosis was devastating for the family,” Ms Whitelaw told STV News. “I wanted people to know what I was saying and I did not want to sound like a machine.
“I am extremely grateful to everyone concerned for giving me back my voice.”
Her daughter Gillian Scott said it was “just the best” to be able to hear her mother’s voice again.
“I think we thought all hope was maybe lost, and it’s not been,” she told Tipping Point host Ben Shephard on Good Morning Britain on Thursday.
Ms Whitelaw added: “It is wonderful being able to talk to people and sound normal and not like a machine.
“My frustration has vanished and I can now have satisfactory conversations with everyone.
Alice Smith, from the Edinburgh-based company Speak Unique, which builds synthetic voices for people, said they were “apprehensive” at first about using the technology.
“We were sort of joking that she’d definitely be able to say, ‘Drop zone four’, as that was such a catchphrase during the show,” she told STV News.
“But we were so pleased that we did manage to get it to work with her appearance on Tipping Point.”
What is MND?
Motor neurone disease is a group of diseases that affect the nerve cells in the brain and spinal cord that tell your muscles what to do.
Also known as ALS, it causes muscle weakness and stiffness.
Eventually people with the disease are unable to move, talk, swallow and finally, breathe.
There is no cure and the exact causes are unclear – it’s been variously linked to genes, exposure to heavy metals and agricultural pollution.
How Sex Surrogates Are Helping Injured Israeli Soldiers
In many countries surrogate sex therapy – in which a person is hired to act as a patient’s sexual partner – is controversial, and not widely practised. In Israel, however, it is available at government expense for soldiers who have been badly injured and need sexual rehabilitation.
The Tel Aviv consultation room of Israeli sex therapist Ronit Aloni looks much as you would expect. There is a small comfy couch for her clients and biological diagrams of male and female genitalia, which she uses for explanation.
But what happens in the neighbouring room, which has a sofabed and candles, is more surprising.
This is where paid surrogate partners help teach some of Aloni’s clients how to have intimate relationships and ultimately, how to have sex.
“It doesn’t look like a hotel – it looks more like a house, like an apartment,” says Aloni. There’s a bed, a CD player, an adjoining shower – and erotic artwork adorns the walls.
“Sex therapy is, in many ways, couple therapy and if somebody doesn’t have a partner then you cannot complete the process,” she goes on. “The surrogate – she or he – they’re there to model the partner role in a couple.”
Although critics liken this to prostitution, in Israel it has become accepted to the extent that the state covers the cost for soldiers with injuries that affect their ability to have sex.
“People need to feel they can pleasure somebody else and that they can get pleasure from somebody else,” says Aloni, who has a doctorate in sexual rehabilitation.
“People are coming for therapy. They’re not coming for pleasure. There is nothing similar to prostitution,” she adds firmly.
“Also, 85% of the sessions are [about] intimacy, touching, giving and receiving, communicating – it’s about learning to be a person and how you relate to other people. By the time you have a sexual relationship, that’s the end of the process.”
Mr A, as he wants to be known, was one of the first soldiers who got Israel’s Ministry of Defence to pay for sex surrogate therapy after a life-changing accident nearly 30 years ago, when he was an army reservist.
A fall from a height left him paralysed from the waist down and unable to have sex in the ways that he had previously.
“When I was injured I made a list ‘To Do,'” he says. “I have to [be able to] do a shower by myself, I have to eat, dress by myself, to drive by myself and have sex independently.”
Mr A was already married with children, but his wife did not feel comfortable talking about sex to doctors and therapists, so she encouraged him to seek help from Aloni.
He explains how Aloni gave directions and feedback to him and his surrogate partner before and after each session.
“You start from the beginning: you’re touching this, you’re touching there and then it’s building step-by-step until the last stage of getting an orgasm,” he says.
Mr A argues it was right for the state to pay for his weekly sessions, just as it did other parts of his rehabilitation. Today the cost of a three-month treatment programme is $5,400.
“It wasn’t the goal of my life to go to a surrogate, OK, I was injured and I want[ed] to rehabilitate in every aspect of my life,” he says, sitting in his wheelchair, in a tracksuit, on his way to play table tennis.
“I didn’t fall in love with my surrogate. I was married. It was just to study the technique of how to get to the goal. I took it as a very logical thing that I have to do.”
He blames Western hang-ups about sex for any misconceptions.
“Sex is part of life, it’s the satisfaction of life,” he says. “It’s not that I’m being Casanova, this is not the issue.”
A steady stream of people of different ages and backgrounds visits Aloni discreetly at her clinic.
Many are struggling to have a romantic relationship because of intimacy issues or anxiety, or have suffered sexual abuse. Others have physical and mental health conditions.
Aloni has focused particularly on disabled clients since the start of her career. Several of her close relatives had disabilities including her father, a pilot, who suffered a brain injury after a plane crash.
“All my life I was next to people having to deal with and overcome different disabilities,” she says. “All these people were very well rehabilitated and so I had this very optimistic approach.”
Aloni became close to a surrogate who worked with disabled people while studying in New York.
When she came back to Israel in the late 1980s, she gained the approval of leading rabbis for the use of sexual surrogates and started providing therapy at a rehabilitation centre on a religious kibbutz – a rural community.
The rabbis had one rule – no married men or married women could be surrogates – and Aloni has followed it ever since.
Over time, she has won backing from the Israeli authorities. Out of about 1,000 people who have had surrogate sex therapy at her clinic, dozens have been injured army veterans – many with brain trauma or spinal cord injuries, whose treatment has been funded by the state.
Aloni believes that Israel’s family-oriented culture and its attitude towards its armed forces has worked in her favour. At 18, most Israelis are called up for military service and they can continue as reserve soldiers into middle age.
“We are in a war situation all the time since the country was established,” she says.
“Everybody in Israel knows people who were injured, or died and everybody has a positive approach to compensating these people. We feel obliged to them.”
A tall man of about 40 is sitting in his garden in central Israel with a blanket across his lap. He is a former reserve soldier whose life was shattered in the 2006 Lebanon War.
David – as we will call him – was left unable to talk or move.
He can only communicate with the help of his occupational therapist – if she supports his arm and holds a pen in his hand, he can write on a whiteboard.
“I was just an ordinary person. I’d just got back from a trip to the Far East. I was studying in university and worked as a barman. I used to love sports and being with friends,” David says.
When his military unit came under attack, he suffered serious leg and head injuries and went on to spend three years in hospital.
During that time, he says he lost the will to live.
Things only began to turn around after his occupational therapists suggested surrogate sex therapy.
“When I started the surrogate therapy, I felt like a loser, like nothing. In therapy. I started feeling like a man, young and handsome,” David says.
“It was the first time that I felt that since my injury. It gave me strength and it gave me hope.”
This was an intimate relationship that David started, knowing that it would have to end. So was there a risk that he would be emotionally hurt?
“Initially, it was difficult for me because I wanted the surrogate all to myself,” he says. “But I realised that even if we’re not partners, we’re still good friends. And it’s worth it. It’s worth everything. It just helps you rebuild yourself all over again.”
While the usual rules are that surrogates and clients cannot be in contact outside of the therapy, David and his surrogate – a woman who uses the alias Seraphina – were given special permission by Dr Aloni’s clinic to stay in touch when their sessions ended.
Since the treatment, those close to David say they have seen a transformation in him. He has been focusing on plans for the future.
While having a sex life remains very difficult, before Covid-19 struck he had begun socialising more, going out with the help of his carers.
Seraphina has worked as a surrogate with Ronit Aloni for over a decade. She is slim with bobbed hair and is warm and articulate.
Recently she published a book about her experiences. Titled More than a Sex Surrogate, the publishers describe it as “a unique memoir about intimacy, secrets and the way we love”.
Like all of the surrogate partners at the Tel Aviv clinic, Seraphina has another job. Hers is in the arts. She says she took on her role for altruistic reasons.
“All those people that suffer under the [surface] and have all those hidden secrets that they walk around with, I really wanted to help because I knew I had the ability,” she explains.
“I had no problem with the idea of using sexuality or my body or touch in the therapy process. And the subject was fascinating to me, sexuality was fascinating to me.”
Seraphina describes herself as “like a tour guide”, saying she takes clients on a journey in which she knows the way.
She has worked with about 40 clients, including another soldier, but says that the severity of David’s injuries posed a unique challenge. She learned how to help him to write so that they could chat privately.
“David is the most extreme case ever known. It was like walking in a desert – you had no idea of the direction [in which] to go,” she says.
“I had to be very, very creative because he doesn’t move at all. I moved his body as I imagined he would have moved if he could. He felt his body but he could not move it.
“He always said: ‘She knows exactly what I want, even if I don’t say anything.’ So, it was really flattering.”
While being a surrogate, Seraphina has had boyfriends who, she says, accept what she does. But she knows other women and men who have stopped acting as surrogates for the sake of their personal partners or to get married.
She explains that saying goodbye to clients after they have been intimate is necessary but can be difficult.
“I say, it’s like going to a vacation. We have an opportunity to have a wonderful relationship for a certain short time and do we take it or give it up?
“And it’s the happiest break-up anybody can have. It’s for good reasons. I can cry sometimes, but at the same time, I’m so happy.
“When I hear that anybody is in a relationship or had a baby or got married, it’s unimaginable how happy and thrilled and thankful I am for what I do.”
Late in the evening, Ronit Aloni is still working, giving an online lecture to a group of sexologists from Europe and as far afield as South America.
She recounts cases and quotes studies suggesting surrogacy is more effective than classic psychological therapy at treating sexual problems.
“This is most interesting, those therapists who did already work with surrogates all of them said that they will do it again,” she tells them.
With modern surgery helping more severely wounded soldiers to survive she believes surrogate treatment could be used more widely.
“You cannot rehabilitate a person without rehabilitating their self-esteem, their perception of being a man or a woman,” she says.
“You cannot ignore this part in our life. It’s very important, powerful. It’s the centre of our personality. And you cannot just talk about it. Sexuality is something dynamic, is something that has to be between us and other people.”
In Aloni’s view, modern society has developed unhealthy attitudes towards sex.
“We know how to joke about sexuality. We know how to humiliate people, we know to be very conservative or too extreme about sexuality,” she says.
“It’s never really balanced. It’s never weaved into our life in the way it’s supposed to be, and sexuality – it’s life. This is how we bring life. It’s nature!”
GPs To Prescribe Benefits And Debt Advice In Pilot Project
With many thanks to Benefits And Work.
GPs in Lambeth and Southwark will be able to prescribe financial advice sessions for working age patients in a pilot project which could be rolled out nationally if successful.
GPs will identify working age patients who have a long-term health condition and financial problems and refer them to Impact on Urban Health and the Centre for Responsible Credit, who will be able to help them with claiming benefits and dealing with debt problems.
Kieron Boyle, the chief executive of Impact on Urban Health, told the Guardian: “People’s finances and health are connected: debt, money worries and financial insecurity can have a profound effect on our physical and mental health.
“This is especially the case in ‘cliff edge’ moments such as unexpected bills or delays in income.
“As a result, we’re proud to support the UK’s first model of social prescribing that includes debt advice, bringing together local authorities, housing associations and healthcare providers. We think this approach could spread to cities across the country.”
The pilot project is set to be tested on 2,000 people and will then be reviewed with the aim of encouraging a national roll-out.
With many thanks to Benefits And Work.
Yet each of these claimants got substantial awards when the DWP backed down before a hearing could be held. One received £12,000, one got £5,000 and the other £3,000.
The LEAP review
In a decision known as MH, it was found that the DWP had been misapplying the law in relation to psychological distress and following the route of a journey.
Claimants should have been awarded the standard rate of PIP mobility if, because of overwhelming psychological distress, they needed someone with them to follow the route of an unfamiliar journey or if they could not undertake a journey at all.
And they should have been awarded the enhanced rate if they could not follow the route of a familiar journey without having someone with them for the same reason.
Instead the DWP had been awarding just 4 points, not enough for any award of the mobility component at all.
The LEAP review also relates to another case called RJ, in which the DWP was found to have got the law wrong in relation to safety and supervision. That issue is not covered in this article.
The DWP claim to be checking the cases of 1.6 million PIP claimants to make sure they have the correct award and writing to them with the results.
Where are all the decision letters?
According to the DWP’s figures, back in January 890,000 cases had been cleared against MH since June 2018. By the time we did our survey in April, that figure should have been over the million mark.
Yet the overwhelming majority of people who responded to our survey said they hadn’t had a letter connected to this review – even though the survey was directed at people ‘who have received news from the DWP that your LEAP review has been unsuccessful’.
Our newsletter goes out to very nearly 100,000 people. We would expect that number to include a reasonable proportion who were covered by the LEAP review.
So why do so few people recall getting a letter?
One possibility is that because of the way the letter was written, people did not did not realise it was a LEAP review letter and no longer remember having got it. The letter was headed
Personal Independence Payment
Changes in PIP law – we have looked again at your PIP and it has not changed
This would be enough to persuade many people to read no further.
The only information given about the MH decision in the letter is:
MH v DWP tribunal judgement. This relates to how ‘overwhelming psychological distress’ is considered when assessing the ability of someone to plan and follow a journey. This change applies from 28 November 2016.
No attempt was made to explain what the decision said or who might be affected.
The other possibility is that the DWP have not written to the majority of people who have been reviewed.
No knowledge of review
Many people had not only not received a letter, they had heard nothing about the LEAP review from anyone but Benefits and Work. By not effectively publicising the review, which involves 1.6 million people, the DWP are ensuring that most people have no understanding of whether or how they might be affected.
This is the first time I have heard of this.
The first I knew about this was reading your news letter
This is good news from the DWP’s point of view. If claimants don’t know about the review and the DWP don’t send them a decision letter, or send them one that explains nothing, they will never know that they may be missing out on thousands of pounds in arrears.
Didn’t understand the review letter
As we’ve seen the LEAP letter explained virtually nothing about the MH decision or who it might affect.
Didn’t know what the letter meant until I’ve read this news letter
Didn’t really understand stand what the letter meant had no one to help me
I don’t understand what the letters mean and have to get them explained and most time put them away as it’s about work out money
Again, it’s a win for the DWP. People are unlikely to challenge a decision if they don’t understand what it is about.
No response
We heard from people who had written to the DWP after learning about the LEAP review, but had received no response.
I wrote a letter last year asking them to look at my claim again. I receive ESA also and
registered as severely disabled. I got no reply. It took me a very long time to face up to writing
that letter.
I cannot understand why I have had no response. My letters were sent recorded delivery and the last was 3 months ago Not to get any response means I cannot even challenge anything. Also I do not understand why they haven’t even responded to say we are looking into this.
I have wrote to them back in November 2020 asking them to look into my claim again, which they haven’t replied back yet to me.
Here the DWP are using the standard technique of ignoring people in the certain knowledge that a high proportion will give up and go away.
Fobbed off
Claimants who contact the DWP about the review by telephone have been routinely fobbed off.
I didn’t receive a letter but rang DWP, they told me my claim had been looked at but there would be no change.
I sent the letter in October but they only acknowledged it in February when I called up to ask if they had it but they said it had been flagged to be looked at – but they were not very helpful and said that everyone who was supposed to be paid was most likely paid.
I called the DWP re. the review of all cases and have been told that I have to wait until they
get round to me.
Told review would take place at a future date unspecified.
I asked for this after announcement re mental health and mobility award – I work for Citizens
Advice, benefits is part of my work, including PIP. They just said (phone conversation) he gets
nothing and it won’t change.
I called the DWP last year and was informed that I was one of the persons down to get this back payment from 2016. Interestingly I called them again 2 weeks ago and the person was very cagey and told me I would have to wait and see!
Again, the technique of wearing people down and lowering their expectations will mean that the number of challenges to decisions, if they are ever actually communicated, will be tiny.
Not aware of appeal rights
We asked people who had been told they did not qualify for an award of arrears why they had not challenged the decision. In many cases claimants were simply not aware that they had a right of appeal.
I didn’t think I could appeal, plus I would be afraid of losing my award.
I took the DWPs decision for granted and thought it was correct. Having second thoughts now having seen your article. I think I’ve been a fool.
Cos they told me that I was not entitled to extra points so I believed them
I thought that they made a decision and that was that.
I didn’t realise I could argue this at that point in time. I basically just put it away and ignored it.
I did not know that I was able to challenge the decision and would not have been sure how to anyway.
I was not well enough due to my Mental Health and I wasn’t really aware I could challenge it.
When I realised that I was able to I thought it was pointless as I had not done so within an appropriate timescale
In fact, the right to challenge the decision was not put in the body of the letter, before the signature. Instead, it was on a separate page of general ‘bumph’ about other benefits and changes of circumstances. No information about how to get help from an advice agency was given, yet details of how to get budgeting and savings advice were provided.
Too worried to challenge
The DWP can also count on fear to reduce the number of challenges. If they unfairly refuse an increase or a backdated award to claimants who are already getting some rate of PIP, a very large proportion will be much too afraid to challenge the decision in case they lose what they already have.
Was frightened I would lose my award entirely if I challenged them.
I was afraid they would take away all my money.
Don’t want to lose what I’m getting re award for personal care.
I have been dragged to Tribunal, every time my PIP has come up for renewal. I dare not do anything that would jeopardised my award.
I have Autism and ADHD don’t go out alone, was worried about losing Care component
Lack of help to challenge
Challenging a decision via the mandatory reconsideration and appeal process is a complex business. Some claimants would be willing to undertake it if they have help, but funding cuts and the pandemic have ensured that such help is increasingly difficult to find.
I would like to challenge it but feel I need qualified legal help to do it
I didn’t want to jeopardise my existing PIP award by questioning the above DWP decision. I was unable to get legal advice/advocacy or support at the time.
I wouldn’t know where to start?
Effect on mental health
For some claimants, the mental distress caused by contact with the DWP means that attempting an appeal without a great deal of support is unthinkable.
I had tried to challenge the decision on the original award and mentally could not cope with it. Therefore when received the letter dated 28th May 2019 I just filed the letter away. Otherwise it plays on my mind causing a number of other issues on my Mental Health.
I have never experienced the stress the claim procedure put me through. It took me years, yes years to come to terms with what i endured. I do not think i could survive a repeat.
My sons mental health is such that he is terrified, paranoid and begs me not to speak with them in case they take what he has away or insist on assessment. He cannot attend assessment. Last one on paper. His MP – [name redacted] will not help much with benefits, told me ‘People try to pull the wool over our eyes.’ What can you do with that mentality?
Clearly entitled but still had nothing
Some claimants received the enhanced rate of the mobility component because of the MH ruling when their award was subject to a planned review. However, they have still not received the backdated award they are clearly due.
I received enhanced mobility at my last assessment and only backdated a few months and was told I would get the remainder in time, still waiting
Received enhanced on both parts from standard daily living. Decision maker told me I was absolutely right about the MH ruling and a separate team will be looking at it for me and they will be I touch in due course. This was in July 2020 I have since wrote to them stating I feel like I’ve been forgotten etc and received a letter back saying they are still working on my file.
Yet the DWP claim that they are now much better at identifying claimants most likely to get an award and ‘This has allowed the exercise now to be focused on these claimants and ensure they receive payments as quickly as possible.’
So why are these claimants still waiting?
Rigged review
At every step of the way, the DWP have rigged this review so that only a tiny proportion, less than half of one percent rather than the 14% they originally claimed, of claimants will get an award.
And they have so arranged matters that hardly anyone will challenge the decision.
Yet as we saw above, the arrears involved amount to very considerable sums.
And in all cases the DWP gave in and handed over the money before the matter got to an appeal tribunal.
It’s almost as if there are details about the way this review is being carried out that they don’t want anyone to know about
But we will keep digging.
With many thanks to Benefits And Work.
A claimant represented by the London Irish Centre has succeeded in getting an appeal tribunal decision overturned at the upper tribunal by submitting evidence about the distance from his home to a bus stop using Google Maps.
The claimant did not attend an appeal on their PIP claim at which a first-tier tribunal held that they were able to walk more than 50 metres but no more than 200 metres, scoring just 4 points. They based this on the time it took the claimant to walk to the bus stop in order to go to their local shop, which the tribunal estimated to be a distance of between 310 and 390 metres.
However, the claimant’s representative at the upper tribunal submitted evidence taken from Google Maps to the Upper Tribunal showing that the distance was in fact just 140 metres.
Ordinarily, the upper tribunal does not consider new facts when considering a case.
However, the upper tribunal judge in this case set out the grounds on which the upper tribunal can accept new evidence and found that they were satisfied in this case.
In particular, the claimant’s representative argued that “plotting the precise distance in metres between an address and a (non-address) landmark, with details of incline, specifying that the journey was to be undertaken on foot, and placing the information in a readily understandable format for presentation in evidence involved considerable skill” that neither the claimant nor their original representative possessed.
The case was returned to a new first-tier tribunal for a full rehearing.
Lego’s Braille Bricks In Use
Young Woman Left In Wheelchair By Endometriosis
A 23-year-old woman who begged doctors to remove her womb to relieve chronic pain says the surgery is being refused due to her age and childless status.
Hannah Lockhart has endometriosis, a condition that can cause debilitating pain, heavy periods and infertility.
Although she has always wanted her own children, Hannah says her daily pain is now so severe she wants a hysterectomy.
“It’s heartbreaking that just because I’m so young I have to keep suffering,” she told the BBC’s Evening Extra.
Ms Lockhart, from Bangor in County Down, has been in hospital seven times in the past year because of crippling pain from endometriosis.
- Listen to Hannah Lockhart tell her story to BBC Radio Ulster’s Evening Extra here.
“Every single day I’m taking morphine, I’m taking different tablets for nerves to try and stop the pain and nothing works,” she said.
The condition occurs when bodily tissue similar to the lining of the womb starts to grow in other parts of the body.
Ms Lockhart’s problems began in her early teens. By the end of last year she was having difficulty walking and had to use a wheelchair just to be able to leave her house.
“This is far, far more than a sore, heavy period every month – it has damaged several different areas of my body now,” she said.
‘Love and the life you provide make you a mother’
Complications from the disease mean she needs a urinary catheter to go to the toilet and, after emergency surgery last summer, she is already going through the menopause.
“Endometriosis affects a lot more than just your ovaries and your womb,” she said.
“Mine has spread to my bowel, it’s right through to my back and it has also completely damaged my bladder to the point that I can no longer use the bathroom myself.”
Ms Lockhart is engaged to be married and she and her husband-to-be had been looking forward to starting a family in a few years’ time.
However, the severity of her recent symptoms led to Hannah “pleading” with doctors for a hysterectomy.
“Last June after I had the surgery, I was put into early menopause so that’s something that I’ve been going through… and I will go through for at least another year now.
“Being in menopause at 23 – it’s not very nice at all.
“I have to take hormone replacement therapy (HRT) every day to try and calm down my symptoms that come with it.”
What is endometriosis?
- It is a condition where tissue similar to the lining of the womb grows elsewhere inside the body – often around reproductive organs, bowel and bladder
- Like the womb lining, tissue builds up every month then bleeds
- However, unlike a period there is no way for the blood to escape
- The build-up of trapped blood can result in internal lesions and scar tissue
- Some people experience no symptoms but for many others the pain can be debilitating and the condition can lead to infertility
- There is no known cause or cure for the condition
At first she found the prospect of infertility more of a struggle than coping with her physical pain, but the couple have since made inquiries about adoption.
“I don’t think I will ever get over the fact that I won’t have my own children naturally – that’s hard to come to terms with.
“But at the end of the day I know that it’s not giving birth to a child that makes you a mum – it’s the love and the life that you provide for that child that makes you a mother.
“So I hold on to that and the hope that some day I’ll be able to give that child a loving home.”
Ms Lockhart’s father, Peter, agrees with her belief that doctors’ reluctance to perform a hysterectomy is due to her young age and the fact she is childless.
“Had she been an older woman who already had children, not a problem – they can deal with it in a more aggressive manner,” he said.
He said it was “very, very difficult” to witness his daughter in such pain and has called on medics to treat her as an individual, rather than making decisions solely based on her age.
“How I see it is: If I’m in this much pain, what use am I to any child as a mother?” said Ms Lockhart.
“I couldn’t pick my child up, I couldn’t do what a mother is supposed to do.
“So I need them to do whatever it takes to make me better in order for me to be able to be a mother to a child in later years.”
BBC News NI has contacted Ms Lockhart’s health trust for a response to the issues she raised.
The decision to bar clinically extremely vulnerable supporters from the Carabao Cup final is “direct discrimination”, according to a group of disabled Tottenham fans.
Manchester City and Tottenham have each been allocated 2,000 tickets for the match on 25 April, which is part of the government-led events research programme (ERP), a pilot scheme looking at how to get spectators safely into venues amid the pandemic.
The ERP does not allow for those classed as clinically extremely vulnerable (CEV) or those living with them to attend. SpursAbility said it was extremely disappointed, and asked for the decision to be reviewed.
“A number of our members and supporters will fall into this [CEV] classification under recent Covid-19 guidance and have also endured long shielding periods,” the group said in a statement. “However, most of them will have had their first and second vaccinations and are at considerably lower risk than those who are yet to be vaccinated.Advertisement
“Government guidance places those aged 70 or over at an equal or higher risk category yet there is no exclusion issue for anyone in these higher-risk groups. The policy adopted for this match is a direct discrimination toward many disabled supporters.
“Some of our supporters have been shielding for over 12 months and have seen this match as an opportunity to return to some form of normal lifestyle. The match is allowing only 8,000 spectators in an outdoor stadium with a capacity of 90,000 – less than 9% of its potential. Yet there is a choice to exclude a small group of supporters who would need to disclose their classification on a voluntary basis.
“At the moment a CEV person who has had the coronavirus and recovered and has subsequently received two vaccine doses is a considerably lesser risk compared with a 40-year-old who may well have unknown health issues. Is this fair and reasonable?
“We ask that this criteria in the government-led research programme for reopening live events to the general public be reviewed. Returning to live matches again is the lifeline needed by many disabled supporters to maintain their mental health after long periods of forced isolation, yet they are being precluded on outdated advice and a broad-brush approach open to abuse in so many ways.”
The Department for Digital, Culture, Media and Sport has been approached for a response.https://www.theguardian.com/email/form/plaintone/the-recapSign up to The Recap, our weekly email of editors’ picks.
Under-18s are also not allowed to attend the match. Those fans eligible for a ticket must take PCR Covid tests before and five days after the final, and must travel to a local lateral flow testing site to provide proof of a negative test within 24 hours of the final.
This proof will enable them to gain entry to Wembley, and in the case of City fans will be needed to access specially chartered trains and coaches from Manchester. City said 1500 spaces would be available via these trains and coaches, and 250 car parking spaces would be available at Wembley. The final 250 tickets would be sold to City fans in London and the home counties, who would need to make their own travel arrangements.
Hannah Cockroft: ‘Duke Of Edinburgh’s Award Inspired Me’
A wheelchair racer said taking part in the Duke of Edinburgh’s Award helped start her Paralympic career.
Hannah Cockroft MBE, DL has won five Paralympic, 10 world and two European titles, in the 100m, 400m and 800m T34 races.
She said the physical part of the award was her “step” into sport.
She has since given out gold Duke of Edinburgh’s Awards and said Prince Philip was “so interested” in every participant’s story.
Ms Cockroft, who is from Halifax, West Yorkshire, and studied at Coventry University, completed her bronze award at school.
“[It] completely pushed me out of my comfort zone. I was 14 years old, and as a disabled child I relied on my parents a lot so the Duke of Edinburgh’s Award really gave me the confidence of independence.
“The Duke of Edinburgh’s Award is made up of four different sections and one of them is to learn a physical skill which was my step into Paralympic sport.
“You probably could say without the Duke of Edinburgh’s Award I wouldn’t be a Paralympic champion.”
Ms Cockroft, who met Prince Philip several times, said he was a “lovely man” who “immediately put you at ease”.
She added: “I remember when I met him one of the first times he was really worried about how to address me as a wheelchair user.
“He was saying, ‘I am worried I can’t look you in the eye. Do you want me to crouch down next to you? Do you mind if I stand up and look down on you, but that doesn’t seem right’.
“He was really concerned as to the etiquette of speaking to a wheelchair user,” she said.
“The fact that he took the time out to genuinely wonder and worry about how to do that was massive.”
Sound Of Metal Review
The existential issue of disability is worried at in this vehemently acted addiction-recovery drama about a heavy-metal drummer who suddenly experiences hearing loss. Clearly, very personal experiences are here being transformed into fiction. Director and co-writer Darius Marder has avowedly based his movie in part on his hearing-impaired grandmother, and partly on an abandoned docu-drama project he was developing 10 years ago with director Derek Cianfrance called Metalhead, in which the real-life mega-decibel metal duo Jucifer were going to play a version of themselves in which the drummer is imagined to be (unsurprisingly) going deaf. Yet in this film, hearing loss isn’t the only issue at stake.
Riz Ahmed gives a typically fierce and focused performance as Ruben, drummer with an avant-metal band called Blackgammon; his partner Lou (Olivia Cooke) is guitarist and singer. They tour around the United States in an RV playing to loyal metalhead fanbases, happy enough until Ruben realises he can’t hear anything – a terrifying aural fog on the soundtrack. The catastrophe is made even worse because he is a recovering heroin addict with serious relationship issues. Ruben’s sponsor suggests he applies to a radical therapeutic community run by a greying Vietnam veteran called Joe, in which role Paul Raci gives a quietly weighted and serious performance. Joe’s belief is that hearing-impaired people need to “learn how to be deaf”: to learn how to accept their condition as a valid alternative existence, and to find the stillness inside themselves which is the vital precondition for this learning process. But angry, bewildered Ruben is still planning to somehow get the money together for a costly, risky surgery that would restore some of his hearing – though that might mean selling his RV and his musical equipment, sabotaging the musical career that was supposedly the whole point.
Sound of Metal is a painful, thoughtful, sombre film that telescopes a long story into just a few months. Ruben pretty much immediately finds a doctor to give him the hearing tests, pretty much immediately finds a place in Joe’s community, pretty much immediately progresses from mutinous incomprehension to the beginnings of that surrendered wisdom that makes him an invaluable student-teacher for hearing-impaired kids. There’s a nice initial scene in which Ruben is invited to write his name on the board, and he truculently scrawls it in huge letters, making all the kids flinch. It’s the equivalent of yelling.
At first, it looks as if Sound of Metal is going to be all about the clash between Ruben and Joe and their differences of opinion. It’s actually not a million miles away from the difference in Children of a Lesser God (1979), between William Hurt’s idealistic teacher who believes in vocalisation and Marlee Matlin’s rebellious former student who opposes it in favour of sign language as something with a cultural authenticity of its own, though here the teacher/pupil attitude is reversed. But the narrative progresses beyond this, into something interestingly unfinished and unclosed, leading us to Lou’s own painful story, and her relationship with her father Richard (an intriguing if opaque cameo from Mathieu Amalric).
But how about Ruben’s drug problem? Is he going to relapse, or what? Or is the film trying to suggest that the world of heavy metal, so far from being an admirable artistic vocation or creative calling, is just itself a type of addiction – one, moreover, with an obvious disability risk? I’m not sure. This film could just as easily have been about a drummer going deaf who had no drug problem. Sound of Metal tries to do something else, something more complex, but it looks as if disability and addiction are uneasily muddled together, and the film never quite unravels the strands. But Ahmed’s performance clarifies the drama and delivers the meaning of Ruben’s final epiphany. He gives the film energy and point.
Sound of Metal is released on 12 April on Amazon Prime Video and on 17 May in cinemas.
A leading sight charity has stressed the need for inclusive web design after rail websites switched to black and white to mark Prince Philip’s death, leaving partially sighted people struggling.
Network Rail and National Rail websites turned from colour to greyscale on Monday morning in a tribute to the Duke of Edinburgh. The gesture backfired after customers highlighted accessibility issues and complained they could no longer use the website.
Other train operators, including CrossCountry and Northern rail, had also removed colour from their websites.
One Twitter user said: “National Rail have coloured their entire website grey to ‘mourn Prince Philip’, rendering the whole website completely useless to people with visual impairments. The UK has completely lost the plot.”
Robin Spinks, the innovation lead for the Royal National Institute of Blind People, said: “As someone who is registered severely sight impaired, good colour contrast on a website is incredibly important. A lack of this makes it difficult for me to read the content and causes headaches and eye strain. It leaves me feeling unwelcome as a customer.Advertisementhttps://179291935aa6616c7074e1c89a01d0d9.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
“Although I can understand why an organisation might make a change to its website in circumstances such as this, any change should be inclusive and accessible so that all customers can continue to use the site as normal.
”Adherence to inclusive design standards should remain the most important aspect for all digital design, regardless of any changes made.”
Mikey Stillwell, a designer at the research, design and user experience agency Verj, who is colour-blind, said familiarity rather than accessibility was the issue.
He said: “In terms of [an] accessibility standpoint, I can’t really see too much of an issue because there’s loads of contrast on the website. But from a UX [user experience] there is. When you have grey call to actions, for example, they’re normally seen as disabled or inactive. There is a total loss of hierarchy for what is important on a website as well if everything’s the same colour.”
Buckingham Palace announced that Prince Philip died on Friday morning aged 99. Many institutions across Britain marked their own tributes in respect. BBC broadcasters changed their ties to black, while there were also scheduling changes made to radio and television programming across the network for special coverage of the Prince’s death.
A spokesperson for National Rail said: “The National Rail Enquiries website has been temporarily greyscaled as a mark of respect following the death of HRH Duke of Edinburgh on Friday. We are listening to feedback about how people are using the website and are making further changes today to make it more accessible to all our customers.”
A Network Rail spokesperson said: “We temporarily made our website greyscale as a mark of respect following the death of HRH the Duke of Edinburgh. We’ve been made aware this has caused problems for people accessing the content so it’s now back to its usual look. We’re sorry it’s caused issues and we thank everyone for their feedback.”
More than 80 actors and entertainment industry professionals including Amy Poehler, Naomie Harris and Jessica Barden have signed an open letter against prejudice and discrimination towards disabled talent in Hollywood.
The letter says there’s an “urgent need to act on disability inclusion” and urges major studios to appoint permanent disability officers.
The number of disabled characters on screen “continues to severely under-represent the actual US population living with disabilities”, it says.
“Due to years of misrepresentation in the media, social barriers, and chronic ableism, the deaf, hard of hearing, neurodiverse and disabled communities continue to be underrepresented and disrespected in the entertainment industry.”
Around one in four adults in the US have some form of disability, according to government statistics.
A recent report found that 3.5% of TV series regular characters were disabled in 2020. A separate study put the number of disabled characters at 12% in 2018 – but found that most of the portrayals were negative.
A previous letter in 2019 said that, among the 61 Oscar nominees and 27 winners who had played characters with a disability, only two had been authentically portrayed by an actor with a disability.
‘Fundamental changes’
The new letter and the #DontDismissDis campaign have been organised by agent Keely Cat-Wells, who said she lost a job because of her disability when she was an actress.
“Covid-19 made productions recruit Covid officers and specialists to keep cast and crew members safe so they could keep accessing work, in order to save as many jobs as possible,” she said.
“The disabled community have faced threats, lost jobs and dealt with a lack of access long before Covid-19, and unlike this situation, there has been no drastic steps to provide security.”
The proposed disability officers would “make fundamental changes to dated practices” by giving decision-makers “the confidence to include, talk about and portray disability”, ensuring inclusive and accessible hiring practices, and identifying opportunities for disabled talent.
James Bond actress Harris, who is among the letter’s signatories, said: “If you show the injustice of the system and say, ‘Look, here’s a way forward’, it makes it more difficult for people to ignore.”
In an accompanying document titled Hollywood Horror Stories, disabled talent have anonymously detailed the discrimination they have faced.
‘Old and oppressive systems’
It includes stories of being asked questions like “what happened to you?”, “can you have sex” and “can you really not see?”, and instances where they say basic needs were not met even though castings specifically asked for disabled actors.
One actor said: “I was asked to audition where the audition room was up a flight of stairs with no elevator, the role specifically asked for someone who was disabled to play the role.”
Samantha Mannis, the author of Friend’s Guide To Adulting, was working as a writer for a renowned Hollywood studio when she was fired two weeks after a disability-related hospital stay.
“I had done my job, and spent thousands of dollars of my own money on Uber rides, and designer clothes so that I could fit in,” she said. “After fighting to get discharged from hospital so I could make it to my call time, they told me, ‘This just isn’t a good fit.'”
The letter’s authors say access and representation behind the scenes is just as bad if not worse, with hiring websites often not accessible.
Cat-Wells, who runs management company C Talent, which represents disabled talent, said: “Hollywood has many horror stories, the ones least told are those of the disabled community fighting to get seen, heard, and treated as equals.
“Hollywood needs to remove old and oppressive systems; This is not just about disabled actors, it’s about all jobs in the industry, there should be people with disabilities in every role from entry level to head office, the CEO and beyond.”
University Researchers Reveal Sanctions Targets And Prejudices Of Coalition Government And Warn They May Return
With many thanks to Benefits And Work.
In their paper, ‘Violent bureaucracy: a critical analysis of the British public employment service’ researchers examined the ‘institutionally violent’ claiming process between 2010 and 2015, when claimants were hit by a tidal wave of sanctions created by the Coalition government.
The carried out ten interviews with DWP front-line workers and managers from that period under conditions of strict anonymity, including not identifying even the gender of staff referred to in the research. The DWP staff all worked in different areas of the country and , between them, had over 200 years of experience as civil servants.
The authors look at how ‘Politicians intentionally rehashed and enflamed centuries’ worth of ‘scrounger’ discourses to fortify anti-welfare common sense and manufacture consent for austerity’
Newspapers were filled with anti-claimant propaganda, portraying claimants as ;parasites’, ‘fraudsters’ and migrants placing an increasing strain on public services.
This rhetoric heavily influenced, as intended, the way DWP staff regarded claimants:
‘there was a point at which s/he said, ‘It’s your money! It’s your taxes that they’re living off! You know, you should be sanctioning them!’
Another worker explained:
‘[it was] just work coaches sitting in the canteen at lunchtime saying how awful claimants were and how they were scroungers and liars and all the rest of it.’
DWP staff performance was no longer measured on a range of outcomes, but solely on ‘off-benefit flows’. Meanwhile private sector Work Programme providers were required to target the ‘hardest to help’ claimants including claimants with long-term health conditions and were required to refer claimants for sanctions.
Even though the government repeatedly claimed there were no national or local sanctions targets, the researchers found repeated evidence that there were.
One worker reported:
‘weekly team meetings. And s/he [team manager] used to produce a table which showed how many people you’ve sanctioned or how many people you’d referred to a decision-maker for a sanction.’
Another said:
‘certain staff would come [in the canteen] and say “well I’ve got my [sanctions] target for the week”’
One manager who had witnessed first-hand the harsh realities of the poverty experienced by claimants still got caught up in the targets regime:
‘it sounds sad doesn’t it, but when the figures were coming out of what the unemployed were prior to Universal Credit, it was like exciting: ‘Oh God, what have we got today?’ ‘How many have we got on the books?’ ‘Has it gone down by hundreds?’
In order to deal with the reality of the pain they were inflicting, staff blamed others:
‘yes people [managers] did pull the wool over my eyes [with sanctioning targets]. I’ll quite freely admit it. I don’t care, that’s their conscience, not mine’
Or they became emotionally detached:
‘I think it’s like you shut down the personal stuff, you’re there to do a job. . .we can’t become emotionally involved, can we?’
Or they saw themselves as having no choice:
‘The way I was treated, I had to abide by these rules that went against everything I thought and believed in’
Claimants were deliberately tricked into creating Claimant Commitments that they would not be able to keep in order to allow them to be sanctioned. One worker described how their manager got non-English speaking claimants to sign a Commitment that they would provide job search evidence written in English and then sanctioned them when they failed to do so
“s/he said to me, ‘you think I’m racist, don’t you?’ I said, ‘Well, I didn’t say that’. I never said ‘racist’, but I said, ‘How can you stand there and tell me that if I’m speaking a different language to the person in front of me, I can penalize them because I can be sure that they’ve understood what I’ve said?’ S/he said s/he would do that. That, that was right. S/he would do this Claimant Commitment and get them to sign it. So I said, ‘Well, I’m not going to sign it.’ S/he said, ‘Well, I’ll sign it.’ So I said. ‘You’re signing to say they’ve understood that?’ ‘Well, they’ve signed it, so they must understand.’”
Fortunately, that regime of aggressive sanctioning seems to have now ended as the DWP focuses desperately on trying to get universal credit to work with reduced staff numbers:
‘it’s changed now. It’s completely disappeared in our office. There is no manager putting any pressure on us to sanction. There is no conversation in communication meetings which says claimants are lying scroungers’.
However, the report’s authors warn that harsh treatment of claimants has often occurred during periods of austerity. With a hugely increased claimant count following the pandemic and a mass recruitment of work coaches, the scene may be set for a renewed crackdown.
And, as the authors also point out, with 80% of universal credit claimants expected to manage their claims online by 2024, DWP staff will be entirely shielded from the people they are inflicting harm upon.
You can download a full copy of ‘Violent bureaucracy: a critical analysis of the British public employment service.’
Young fundraiser ‘Captain Tobias’ says he feels “magnificent” after learning his donations will fund a new specialist children’s hospital post.
Tobias Weller, 10, from Sheffield, was inspired by Captain Sir Tom Moore to do a series of ongoing challenges during lockdown, raising more than £150,000.
Tobias, who has cerebral palsy and autism, split funds between his school and The Children’s Hospital Charity.
The charity said a new role would be created, based in his home city.
The two-year Children’s Exercise and Physical Activity Therapist post will be based at Ryegate Children’s Centre.
Tobias said: “It makes me feel magnificent.
“If another child managed to achieve what I have achieved because of my fundraising I’ll be chuffed to bits.”
His fundraising has been praised by Prime Minister Boris Johnson and Olympic gold medallist Dame Jessica Ennis-Hill, who joined him for the end of his second marathon in August.
Tobias met his hero, Captain Sir Tom, when he was awarded the first Captain Tom Young Unsung Hero of the Year award at the BBC’s Sports Personality of the Year event in December.
‘What a legacy’
His mum, Ruth Garbutt, said: “The Ryegate Centre plays a huge part in Tobias’ ongoing care.
“He has visited regularly since he was less than a year old, seeing a range of therapists and consultants who endeavour to help Tobias progress as much as possible.”
Tobias initially set out to raise £500 by walking 26.2 miles (42 km) over three months through his daily exercise in his Sheffield street, using a walker.
He is currently part-way through an Ironman challenge, adding 112 miles (180 km) on his tricycle and a 1.5-mile (2.4 km) swim to his marathon.
Ms Garbutt continued: “It is quite overwhelming to know that Tobias has raised money that will, potentially, change the lives of other children.
“We would both be delighted if one child was positively affected by his fundraising. The reality is that it is likely to affect many children’s lives. What a legacy that is.”
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