Belgian Paralympian Marieke Vervoort has ended her own life through euthanasia at the age of 40.
Vervoort, who won gold and silver at the London 2012 Paralympics, and two further medals at Rio 2016, had an incurable degenerative muscle disease.
Euthanasia is legal in Belgium and in 2008 Vervoort signed papers which would one day allow a doctor to end her life.
A statement from her home city of Diest said Vervoort “responded to her choice on Tuesday evening”.
Vervoort’s disease caused constant pain, seizures, paralysis in her legs and left her barely able to sleep.
In an extensive interview with BBC Radio 5 Live’s Eleanor Oldroyd in 2016 she said: “It can be that I feel very, very bad, I get an epileptic attack, I cry, I scream because of pain. I need a lot of painkillers, valium, morphine.
“A lot of people ask me how is it possible that you can have such good results and still be smiling with all the pain and medication that eats your muscles. For me, sports, and racing with a wheelchair – it’s a kind of medication.”
Vervoort won gold in the T52 100m wheelchair race at London 2012 as well as silver in the T52 200m wheelchair race.
At the Rio Paralympics she claimed silver in the T51/52 400m and bronze in T51/52 100m.
Asked about the fact she had signed euthanasia papers, after the Rio Paralympics she told the BBC: “It gives a feeling of rest to people. I know when it’s enough for me, I have those papers.”
The city of Diest said a book of condolence will be accessible in its town hall from Wednesday.
Jack Thorne Addresses Disability In TV
Disability is being ignored in the conversations about diversity in television, according to the award-winning screenwriter Jack Thorne.
The writer and director, who co-wrote the Bafta-winning This is England ’88 and ’90 series, has said there is an “invisible prejudice in the industry” and called on broadcasters, drama schools, entertainment companies, and agencies to do more to address the issue.
Thorne wrote in the Radio Times: “I sit in meetings pushing disabled talent and I’m told, ‘We don’t want to over-expose them.’ I ask that parts be specifically defined as disabled and I’m told we’ll see disabled actors for the role, but they are almost never cast. I write shows that are exclusively disabled-led and they get rejected. The only one I’ve managed to get away – BBC Three’s Don’t Take My Baby – was done on a reduced budget (again).”
Thorne started out in TV on Skins in 2007, writing an episode in the second season where one character dealt with being a carer for a parent with multiple sclerosis. He wrote in the article that he had asked the role to be played by a woman with MS and Maria Miles was cast.
Thorne then created the Bafta-nominated series Cast Off, a show where every character is played by a disabled actor. When working on BBC Three’s The Fades, Thorne was successful in his request to get disabled talent on the show.
However, he said representation had not improved since then. “These were all over ten years ago and are the best experiences in casting I’ve had,” he wrote. He said disabled creatives are often not given the recognition they deserve and there is a lot of untapped writing, directing, producing and acting talent out there.
Thorne called for disabled diversity targets for drama schools, training programmes, entertainment companies and agencies, and said broadcasters – who do have targets – need to do better. He backed Lenny Henry’s proposed “representation tax relief”, which would reduce the taxes on UK film and television productions that meet certain criteria for women, ethnic minorities or disabled people.
Warren Kirwan, head of communications at disability equality charity Scope, said: “More than one in five of us is disabled, yet disability remains woefully under-represented on television.
“Only 7.4% of the characters on TV are portrayed by disabled people, and only 5.5% of those working behind the scenes are disabled. Advertisement
“Some progress has been made, but we have a long way to go until our screens reflect reality. From casting to commissioning, the industry needs to do much more to recognise disabled talent every step of the way.”
Over 65s With Eating Disorders Denied Treatment
Over-65s with eating disorders are being prevented from accessing some specialist clinics despite NHS England saying they are open to all ages, the BBC’s Victoria Derbyshire programme has found. For some, such support is seen as essential in keeping them alive.
“I have a little grandson and it was his birthday last week,” Gillian Hayes, 64, tells the programme. “He wanted to give everybody a piece of cake – and I just couldn’t take one.”
Gillian has been living with anorexia since the 1960s, when her ballet teacher at drama school told her and other pupils they were “all too fat” to make it.
“It’s still ringing in my ears now,” she says.
She now lives mostly on a diet of drink supplements and says her four children are keeping her alive.
Gillian believes anorexia is still seen as a “teenage disease”. Yet her experience of the condition has become worse in later years, she says, having been sectioned three times since she was 40.
If her weight drops any lower, she will be taken back to hospital. But she says that is not the answer.
Of the 49 adult eating disorder clinics in England and Wales investigated by the Victoria Derbyshire programme, three have a cut-off age of 65, with older patients being referred to general geriatric mental health units – which some experts say are not able to provide the same level of tailored care.
This is despite NHS England telling the programme there is no upper-age limit to eating disorder services.
Two further clinics have now changed their website – after being contacted by BBC News – to remove reference to an age limit of 65, while two said they had a cut-off of 80.
And some NHS trusts don’t provide any form of specialist eating disorder services for adults over 18.
NHS England said in a statement: “The NHS Long Term Plan means almost £1bn extra each year by 2023-24 to expand and improve community mental health care so older people, including those living with eating disorders, can get early access to care, as close to home as possible.”
The Welsh Government said in a statement: “Eating disorder services in Wales consider referrals for adults of all ages. We are making improvements to services, following a significant review. The health minister has set out a series of actions to be taken in the short term and we will continue to work with health boards, clinicians and patients as this work progresses.”
MPs from the cross-party Public Administration and Constitutional Affairs Committee said earlier this year lives were being lost and destroyed by the failure of the NHS in England to provide care for people with eating disorders.
Research by charity Beat showed some specialist services had waiting times of more than five months.
It estimates that as many as 1.25 million people in the UK have an eating disorder, although the issue among older patients is so hidden that there is currently limited data available on that particular age group.
Sylvia, 62, was diagnosed with anorexia five years ago.
She first experienced the condition in her 30s, when she was pregnant and watched her “body getting bigger”.
But it really took hold when her grown-up son left home – and she became so unwell she had to leave her job as a social worker.
At times, she thought about killing herself, she says, describing her inner torment as “hell”.
Sylvia was admitted to a specialist anorexia clinic, where she was fed through a nasal tube.
But she was discharged after two months and says the clinic kept patients for longer only if they were aged under 50.
‘Symptoms overlooked’
The Royal College of Psychiatrists is now calling for care to be standardised for over-65s across the country.
It told BBC News older people with eating disorders “face serious problems around under-diagnosis and symptoms being overlooked”, due to a mixture of lack of awareness, unconscious bias, stigma and generational attitudes to mental health.
Eating disorders among the elderly are often harder to spot, it added, with symptoms often being thought of as part of a physical health problem only “with no consideration of mental health”.
Agnes Ayton, who chairs the body’s eating-disorders faculty, said the answer was to ensure the “improved training of doctors and healthcare professionals”.
Both specialist eating-disorder clinics and services for older people were under-resourced, she said.
And there was “a lack of skill within older adult services, who tend to focus on other mental disorders such as depression, dementia or schizophrenia rather than eating disorders.”
For Gillian and Sylvia, the lack of standardised care means they are left to worry about the treatment they will be able to access in future.
“What happens to me if I decline?” Gillian asks.
Sylvia has been asking herself with the same question – and fears the answer.
“If I got really unwell again, I think I would probably die. That’s the long and short of it,” she says.
“Being different is okay and I went on the show to prove that. It’s really about trusting in yourself and loving yourself for who you are.”
Paddy Smyth is £70,000 richer after winning the second series of The Circle.
But he says the money is not the highlight – that would be all the messages he’s received as a result of being on the show.
“I’ve got so many DMs from people who have disabilities themselves or maybe their daughters or sons have it,” he tells Radio 1 Newsbeat.
“They’ve just said how me being on the show has given their kids hope.
“Some of the messages brought me to tears. You don’t realise the impact you’re having on people by just being yourself. I think that’s lovely.”
The 31-year-old has cerebral palsy, which affects his movement and co-ordination.
Paddy says his inbox is full of people thanking him for using the platform to raise awareness about the condition.
“I know I’ve divided opinion. I went in there as myself, as a person with a disability, I went in there kind of selling those insecurities,” he added.
The Circle is a Channel 4 show where “anyone can be anyone”.
On it, a group of strangers stay separated from each other in different rooms for several weeks and can only chat to each other over a made-up social media platform.
Some players (like Paddy) appear to their neighbours as themselves, but others use photos of someone else and pretend to be that person to try and become the most popular and win the cash.
At first Paddy kept his disability from the other contestants but he says it made him feel as if he was hiding his true self.
But within 48 hours, he had told another contestant about his condition. Image Copyright @Channel4 @Channel4 Report
“It felt like a weight had been lifted off my shoulders, my disability doesn’t define me, but it’s a big part of me,” Paddy adds.
The 31-year-old Irishman says in his day-to-day life people see him and immediately judge him because of the condition.
He said he initially thought he’d enjoy spending time without his cerebral palsy being a factor.
But the longer he stayed on the show, he felt hiding it wasn’t the right thing to do either.
“I felt like I was being a bit hypocritical of myself, you know. It is an intense situation, but I absolutely loved every moment,” he says. Image copyright PA Media Image caption Paddy Smyth alongside finalists Tim Wilson, Georgina Elliott, Woody Cook and James Doran
Paddy, who describes himself a social media influencer, says he’s already had offers from charities and companies that want to work with him.
He was met by friends and family as he arrived back in Dublin after winning the reality TV show.
“It’s been absolutely wild times, we had a party in my house that went on into the early hours of the morning. I’m still recovering.”
Paddy says he’s got lots of plans for the cash prize including giving a portion to his mum.
“I am definitely going to be vajazzle my crutches… whenever I’m on the red carpet I want diamond-encrusted crutches.”
The Accident
Jack Thorne is probably one of the UK’s most in-demand writers.
The Bafta winner’s CV includes TV series This is England, Skins, The Fades and the forthcoming BBC adaptation of Phillip Pullman’s His Dark Materials.
On the West End stage he had a huge hit with Harry Potter and the Cursed Child. And on the big screen, his credits include the Julia Roberts film Wonder plus The Aeronauts, in cinemas in November.
But his latest Channel 4 offering, The Accident, is possibly his darkest work yet.
The four-part drama stars Sarah Lancashire, who also had the lead role in Thorne’s 2018 adoption drama Kiri.
The Accident centres around a small Welsh community torn apart when an explosion at a building site causes a factory block to collapse with a group of teenagers trapped inside.
The long-held bonds between families and friends are thrown wide open as an inevitable blame game begins.
While the storyline is fictional, the real life tragedy of the 2017 Grenfell Tower fire, which killed 72 people, looms large in the background. Image copyright Channel 4 Image caption The community is tight but there is also a sense of isolation
Thorne explains that the plan for The Accident “was always to look at class and restorative justice” but Grenfell shifted his focus.
“I had an idea in my head and then Grenfell happened and the idea changed.
“And the concept of looking at corporate manslaughter and the way a corporate manslaughter trial might work came about.”
Thorne reveals he felt unable to take on the Grenfell story itself.
“I was actually offered Grenfell three times by three different production companies… but I didn’t feel like there were the facts in place to look at it properly without hurting an awful lot of people, trampling over people’s lives.
“It’s not to say that there isn’t a beautiful drama to be made. I just didn’t feel capable of it myself.”
But he didn’t want to leave it there. Image copyright Channel 4 Image caption An act of rebellion – a group of teenagers break into the building site
“It felt like TV could tell a story, which was not looking at Grenfell directly, but by looking at another story around that, maybe we could do a bit of light shining.”
The first person he looked to for his central character was Happy Valley star Lancashire; in fact, the part of Polly was written with her in mind.
“Sarah’s the most extraordinary actress. She is just phenomenal, she makes [rubbish] lines good,” says Thorne.
Polly is married to a local politician who championed the construction project that’s at the centre of the tragedy.
It’s left to her to try to hold the community together and begin the search for the truth.
Lancashire says: “I think with most things that Jack writes there’s something that’s fearless, he deliberately shines a light on a really difficult case where the public, political and private collide.
“And then he does this extraordinary thing, he takes a huge story and makes it tiny. He does exactly the opposite of what most people do. And then he distils it further and examines it forensically through the eyes of those who are most affected. It’s extraordinary.”
Polly’s husband Iwan is played by Welsh actor Mark Lewis Jones, who, incidentally, says Sarah “nailed” the Welsh accent.
We won’t reveal too much but there is a genuinely shocking scene in the first episode between Polly and Iwan; you could hear a sharp intake of collective breath reverberate around the screening room as it played out.
Jones says: “Iwan looks like a man who is hiding some secrets. That scene was shocking and comes out of nowhere.
“He’s a gift to play. He’s very complex and damaged. There’s a lot of layers there. But the relationship between the two was amazing to explore.
“It’s a very distorted strange love story between them.
“And they’ve known each other for a long time. We both felt that this was a relationship that started when they were kids. And they’ve grown up together. And at some point, this relationship has gone pear-shaped.”
Lancashire says: “Those scenes are challenging but that’s the best place to be. Mark is a phenomenal actor so I feel very, very privileged to have had this experience with him.” Image copyright EPA Image caption Thorne says he wants much better representation for people with disabilities on screen
Another key role in the drama is played by deaf actor Genevieve Barr. She plays the part of Debbie, a good friend of Polly whose husband is in charge of security on the fateful building site.
Thorne says getting better representation for actors with disabilities on screen is “my obsession”.
“Genevieve was Bafta-nominated about 10 years ago for The Silence and she’s barely been on telly since. And she’s an incredible actress,” he says. “I’ve worked with her three times and she’s brilliant.
“The fact that she’s not being treasured and pushed up and made into a star is a frustration.”
He believes the entertainment industry is doing “incredibly badly” when it comes to disability and inclusion.
“There’s change happening, it’s just a disappointment that when we’re talking about diversity, disability gets left out of those conversations.”
‘People need justice’
It’s clear by the end of the first episode that there are dozens of questions unanswered, gaps of knowledge that may never be filled.
Thorpe says: “I’m a writer that poses questions, not gives answers. I don’t feel capable of doing that. I hope that by the end, there’s a sense of a thesis.
“But it’s not an easy thing. And the idea that you can single someone out to blame is very, very tricky. But at the same time, it’s also very clear that the judicial system hasn’t found a way to find the answers.
“People do need justice. And justice leads to things improving. The fact that not all the Grenfell cladding has been taken down is really, really crucial, because it means that the companies that put the cladding up are not frightened enough to remove it.
“And that means that justice is failing.”
The first episode of The Accident airs on Channel 4 on 24 October at 21:00 BST.
Nik Royale Accused Of Cycling Drunk
Nik Royale is someone we covered in our early days online. We are very sorry to learn that he has had this experience.
A cyclist accused of riding while drunk says he “won’t stand for” his disability being mistaken for drunkenness.
Nik Royale asked a passing cyclist for help after finding himself “a bit lost” on a track in Bristol but was told to “go home as I should not ride drunk”.
Mr Royale, who has cerebral palsy, said: “I don’t have a choice as to whether I wobble and slur my words.”
“People assume and this is just not fair,” he added.
“I am damned if I am going to wear a T-shirt that says ‘I’ve got cerebral palsy’ in Bristol – there would not be enough room on the t-shirt to explain all the symptoms,” he said.
Mr Royale, who is known as Dolphin, said he had borrowed a bike from a friend as he wanted to go and see the Lord Nelson ship in Cumberland Basin at 09:00 BST on Thursday.
He said he stopped on the way to ask another cyclist for directions, who told him the way but also suggested he should not be riding a bike while drunk. Image copyright Nik Royale Image caption Nik Royale is also an experienced climber and ambassador for disabled sports and rights
Mr Royale said he was disappointed because he has always felt fairly treated in Bristol.
“Bristol has a nice big bubble around it as far as the way Bristolians treat disabled people – it’s amazing – and I won’t let this guy burst it but this kind of thing has to stop,” he said.
“I’m not afraid to speak out about discrimination but a lot of people either don’t talk or can’t.
“People should not be afraid to ask whether someone has a disability or not, but on the other hand people with disabilities should not take it personally if asked in a respectful way,” he said.
‘Appalling’
Ed Holloway, from the MS Society, said: “It’s appalling to hear about Nik’s experience. Unfortunately, this is all too common for people with MS too.
“MS damages nerves in your body and makes it harder to do things, like walk, talk, eat and think.
“Discrimination can make life even harder for people living with an unpredictable condition like MS, and greater public awareness of what symptoms look like is desperately needed. No one should have to put up with this type of mistreatment.”
A press release:
Survey reveals how airlines and airports need to improve for disabled passengers
265 disabled people from the UK took part in a survey – run by online magazine Disability Horizons – to find out their experiences of accessible air travel within the last five years.
64% of the disabled people we spoke to found it difficult to locate information about flying as a disabled passenger when booking a flight.
Nearly 50% of respondents said they couldn’t access the toilets during flights.
For the 71 people we spoke to who haven’t flown in the last five years, the majority said that it was because “it’s too much hassle to fly”.
Booking flights as a disabled traveller
The first challenge for disabled passengers when booking a flight is finding information. Of the people who experienced issues with this:
· 37% struggled to find information on arranging assistance for disabled passengers getting onto and during the flight.
· 32% found it difficult to find details on checking in mobility equipment.
Many disabled people told us they would like to see more airlines have a dedicated accessible booking line.
One person commented: “Airline websites should have a dedicated section/page on issues relating to disability. It is often impossible to book through a third party and therefore not eligible for online booking discounted travel.”
Checking in at the airport with a disability
When checking in, of those who experienced some sort of difficulty, the biggest was the staff not knowing how to handle their medical equipment or mobility aids being checked in – 14% of people discovered this.
A passenger needing to travel with a wheelchair said: “They were concerned about my wheelchair. It was a new, fold-up power chair, but there was concern about what kind of battery it was and whether just disconnecting it was good enough.”
Boarding the plane and experiences during the flight
18% of people said that there were delays caused by lack of assistance when boarding the plane.
For example, one person told us: “I was boarded last due to having to use the ambulift and the aisle chair. In lots of airports abroad, disabled people are loaded first, which is much less stressful than trying to get to your seat whilst all the other passengers are faffing about in the lockers. I believe this to be the cause of most take off delays at UK airports”.
Disabled people also experience unsafe and discomforting transfers by staff, which can cause pain and injury.
One passenger said: “So-called ‘assistance staff’ were employees of the airline not an Assistance Team. I was manhandled in a painful and undignified manner and I was left physically and mentally traumatised.”
The worst experience during a flight is not having access to a toilet. 49% of disabled people said the toilet on the plane wasn’t accessible.
Collecting equipment at the airport
When collecting luggage, 12% of disabled passengers found that their mobility aids or equipment was damaged.
A wheelchair user said: “My wheelchair was scratched and part of the control damaged, which could only have happened due to it being thrown about or not handled and stored carefully.”
Airline and aircraft ratings
Overall, 31% found the experience with the airline ’good’, but 28% said it was ’OK’ and 17% rated it as ‘poor’.
Moreover, 29% said their experience with the airport was ’OK’, with the same percentage said it was ‘good’. But 14% said it was ‘poor’.
Martyn Sibley, co-founder of Disability Horizons said: “At Disability Horizons we believe in getting the voice of disabled people heard. This survey has certainly achieved that. I’m hopeful airlines and airports will now engage with disabled people to create actual solutions. Flying, like any transportation, should be for every human being. Let’s see an end to this avoidable discrimination.“
Accessible air travel panel debate
On Monday the 21st of October 2019, Disability Horizons will be launching its first digital panel debate, discussing accessible air travel.
Hosted by disabled influencer Martyn Sibley, five guests – who all have personal and professional experiences in accessible air travel – will talk candidly about what the airlines and airports need to do to improve.
· Roberto Castiglioni – Director of Reduced Mobility Rights Limited
· Josh Wintersgill – Founder of the easyTravelseat
· Carrie-Ann Lightley – Travel blogger and Marketing Manager at AccessAble
· Chris Wood – Founder of FlyingDisabled
· Graham Race – Accessible Aviation expert at QEF
The digital panel will be published on Disability Horizons on Monday 21, with snippets posted on its social media channels – Facebook, Twitter, Instagram and YouTube – throughout the week.
On Friday 25 October at 5pm, it will be aired in full on Facebook, where Martyn will join the Disability Horizons community to discuss the findings and their experiences.
The Blind And Visually Impaired Women Checking For Breast Cancer
Breast cancer is the most common cancer among women – and the most deadly. Early detection is critical to improve women’s chance of survival.
In Colombia, the project Manos que Salvan Vidas – Hands that Save Lives – trains blind and visually impaired women to screen for signs of breast cancer.
It’s an approach based on their greater sensitivity of touch and is an additional screening method, especially useful for women under 50 who aren’t offered routine mammograms.
Filmed and reported by Elena del Estal and Víctor M Olazábal.
Edited by Elena del Estal.
Part of the A Light in Darkness project, funded by the European Journalism Centre via its Innovation in Development reporting grant.
The Sky Is Pink- A Review
Co-written and brilliantly directed by Shonali Bose (Margarita With A Straw) The Sky Is Pink is, at its heart, a love story. It is the story of three very different kinds of love. The romantic relationship between a strikingly normal married couple. The love between parents and their terminally ill child, and the love between two siblings.
The film is based on the true life story of the late Aisha Chaudhary and her family. Priyanka Chopra and Farhan Akhtar are brilliant as her parents. Rohit Suresh Saraf plays her brother Ishaan as a strikingly normal teenage boy and Zaira Wasim plays the teenage motivational speaker Aisha, who narrates the story of her strikingly normal family.
Her parents are each other’s first love. Her mother is strong, independent and about as far from traditional as an Indian female could be. Everything might have been perfect for this family- except that Aisha was born with a rare, terminal condition, SCID.
She spends most of her short life in hospital or at appointments. However, in between all this the family finds time to make memories, have fun, and Aisha even experiences a teenage breakup.
With an upbeat yet beautiful soundtrack, this movie has something for everyone.
The thought of losing a child would move any loving parent to tears. The thought of losing a sibling of a similar age is heartbreaking for anyone who has ever known that bond. And anyone who has ever had to think about death while their parents still live would hope that they would be left with the loving support that the Chaudhary family clearly has.
I recommend this movie highly to anyone and everyone.
The Climate Revolution Belongs To Disabled People Too
Last week, the Paralympian James Brown tried to glue himself to the top of a plane as part of Extinction Rebellion’s protest at London City airport. Watching the epic performance unfold, I realised I hadn’t seen a single person with a disability who was also a climate protester. Brown is visually impaired, so while he has no direct mobility impairment I don’t imagine straddling an Embraer 190 is an easy manoeuvre. But it was a testament to democracy – and made me think about the place that people with disabilities have within the growing climate movement. As someone with cerebral palsy, I want an accessible revolution. It is everyone’s future, and that needs to be represented in both climate protest and climate policy.
Protest presents so many systemic barriers for people with disabilities, no roadblocks necessary. This was evident when the Extinction Rebellion Disabled Rebels group organised a mobile toilet service for last week’s demonstration – and the hoists and changing tables were impounded by the police before the demonstration even started. Accessibility issues in protest don’t just come from police, but sometimes from groups like Extinction Rebellion too: when street protests are held outside a hospital, many people with physical disabilities aren’t able to go about their daily lives; and if they are held across London – where only about a third of tube stations are step-free – they are often unable to participate.
I was born of climate activists. Naturally, I should be one too. But, by birth, I also have one of the most common causes of physical disability in the UK. I’m finding any drive for direct action that wells up inside me is drained by the prospect of life-limiting climate policies. As part of the environmental movement, plastic straws, which enable around one in four people with my disability to drink, will soon be banned in all drinking establishments. Yet things we could all do without – plastic packaging, six-pack rings and polystyrene cups – remain unregulated and freely flow into our oceans.
The United Nations Framework Convention on Climate Change has done work on gender equality, using “gender focal points”, people who assist in gender-related decisions about the climate. But there isn’t a list of representatives with disabilities, though the outcomes of climate change negotiations will disproportionately affect us. The Paris agreement makes clear its obligation to disability and human rights, but will people with disabilities actually be involved in the discussion? 2:19 Activist climbs plane as Extinction Rebellion takes protest to London airport – video
If we aren’t represented at the top, the impact could be catastrophic for people like me who need certain reasonable adjustments to live our lives. People often tell me, “I don’t know how you get out of bed in the morning with a disability like yours,” but that doesn’t even begin to account for the science and writing and speaking I do, the students I support, the Paralympic training I participate in, the dates I go on. I’m not able to do these things because I’m superhuman – in actuality, it has a lot to do with my motability vehicle, with its regrettable diesel engine, and my blue badge. Limited mobility does not have to mean a limited life, but new climate change policies must recognise the distinction if we are to maintain any level of disabled liberation. Let the plastic straw ban be the first and last anti-disabled, pro-climate legislation.
I was obsessed with a book when I was a kid – Ben Elton’s Gridlock – where oil barons and government agents who want to build more motorways try to murder a climate activist and scientist who invents the perfect electric vehicle. It was published in 1991, before I was born, and when electric vehicles weren’t commonplace like they are now. It just so happened that the hero and climate activist had tetraplegic cerebral palsy. He was a fictional character then, but I believe he’s the climate hero we need today. The oil barons might still want him gone, but it is essential that those responding to the climate emergency do not.
The Peanut Butter Falcon
A critically acclaimed Hollywood movie opening in UK cinemas this week is shining a much-needed spotlight on how learning disability is represented in film.
The Peanut Butter Falcon stars Zack Gottsagen, an actor who has Down’s syndrome. He plays a man who escapes his care home to follow his ambition of becoming a professional wrestler. The film has won universal plaudits for its feelgood factor and optimistic messages about fulfilling your dreams and not judging a book by its cover.
But amid the overwhelmingly positive reviews, there has been little debate about how far this film truly challenges attitudes. One person’s heartwarming is another’s mawkish, and The Peanut Butter Falcon’s sentimental approach could be construed as reinforcing stereotypes about “vulnerable” disabled people triumphing over tragedy. It is a far less gritty film than 2017’s Sanctuary, for example, which reflects the human impact of the now repealed Irish law banning learning disabled people from having sex, or 2016’s My Feral Heart, about a man forced into residential care. Although the general moral of the story is to treat learning disabled people as adults, specific scenes feature Gottsagen’s character playing a childish second fiddle to his two – non-disabled – romantic leads.
Some of the coverage of the film has also been uncomfortable. How many 34-year-old actors are interviewed with their parents, for example? There has also been more focus on Gottsagen’s “struggle” with his disability than on the acting skills he has honed since the age of three (descriptions of an “unlikely star” compound this). However, given Hollywood’s previous offerings, such as Rain Man and Forrest Gump, featuring non-disabled actors as disabled characters, having a learning disabled actor playing a learning disabled character seems like a significant step forward. The directors, who met Gottsagen at an acting camp, were offered money to replace the actor they had shaped their film around. They refused.
Amid the cliches there is also authenticity in scenes reflecting the restrictive nature of institutions and in the portrayal of risk-averse, overprotective carers infantalising a grown man. So, The Peanut Butter Falcon should be welcomed as a mainstream, crowd-pleasing fable that opens the door to more truthful and raw screen portrayals of learning disability. Advertisement
More than 2,000 films made by or featuring people with learning disabilities or autism have been submitted to the forthcoming Oska Bright film festival, which opens in Brighton next week. The biennial event, founded 15 years ago by learning disabled film-makers and supported by disability arts charity Carousel, is the world’s biggest learning disability film festival and has a reputation for showing radical work (it hosted the UK premiere for Sanctuary in 2017). This year, for the first time,the short films being screened will be eligible for a Bafta.
Sarah Watson, an Oska Bright committee member, says her aim is to push for a more inclusive workforce in film as well as for fairer representation on screen (only 0.3% of the film workforce is disabled, according to UK film industry organisation Creative Skillset). Watson, incidentally, is a fan of The Peanut Butter Falcon, which she describes as “funny and heartwarming, but not too heartwarming”.
Matthew Hellett, the festival’s programmer, says Oska Bright will showcase “big bold stories from learning disabled people … hopefully people will talk about the films and have a positive outlook.” He firmly believes films like Rain Man and Forrest Gump are “completely wrong” because they fail to represent the lives of learning disabled people: “Without people that look like you on the screen, you don’t know that it’s possible for you to be there yourself.”
Better screen and stage representation for the UK’s 1.5m learning disabled people will also impact on public attitudes. Alongside glaring inequalities in health, education and housing, learning disabled people are the target of hate crime (new research from learning disability charity Dimensions shows 73% of 200 learning disabled people surveyed experienced such incidents). There is surely space both for mainstream Hollywood movies like The Peanut Butter Falcon that trickle down into the public consciousness and grassroots filmmaking that will hopefully influence change in the film industry. Both are vital if we are to see more learning disabled people both in front of and behind the camera.
Why Bronwyn Berg Spiked Her Wheelchair
Bronwyn Berg became so fed-up with people manhandling her without asking, she put spikes on her wheelchair. And she’s not alone. With a spate of disabled people reporting unwanted touching some are taking action to stop it in its tracks.
You’re minding your own business when – out of nowhere – a man you’ve never met puts his hands on your wheelchair. He starts to push you down the street and you have no control over where you’re going.
This happened to Berg. “It was really terrifying,” she says. Despite her screams “not a single person stopped to help”.
“I thought: ‘How is it that nobody is helping?’ If I was able-bodied and a man had picked me up, would I have had a different experience?”
Berg, who has used a wheelchair since she acquired a brain injury five years ago, added metal spikes to the handles of her chair to make it harder for people to take control of her after this incident.
The spikes, which don’t puncture the skin, were homemade by her partner Hal after he noticed she became anxious whenever she heard approaching footsteps.
“The heart of it is I want to feel safe in the world,” says Berg, who lives in British Columbia, Canada, and does feel safer now she has the spikes. She explains that her wheelchair is an extension of herself and if someone grabs it, it’s the same as someone grabbing hold of her.
Being touched or grabbed by a stranger without warning or consent is still an all too-common experience for many disabled people. Although people believe they’re being helpful with their actions, an invasion of personal body space can be frightening.
After accepting assistance from someone who asked her first, disabled pedestrian Chloe Tear tweeted: “I really appreciate people OFFERING support, rather than assuming I need it.”
If someone approached a non-disabled adult and touched them, you wouldn’t be entirely surprised if they were shouted at, or even accused of assault.
So why, in this era of awareness, do complete strangers act without asking?
“I think a lot of people in the UK panic about disability,” says Dr Amy Kavanagh, a visually impaired campaigner.
“It makes them feel awkward and we know a lot of people don’t want to interact with disabled people very much so they panic and their natural instinct is to use their hands and not their words.” Image copyright Dr Amy Kavanagh
Research from the charity Scope found two thirds of the British public feel uncomfortable when talking to disabled people. In particular, those aged 18-34 were twice as likely than older people to feel awkward.
Dr Kavanagh has always had low vision but noticed a significant change in attitude towards her two years ago when she started to use a white cane when out and about.
“I had this magical new thing which gave me my independence,” she says. “But I was suddenly experiencing the world as a visibly disabled person – and it made me realise how differently people would treat you if they perceive you to be incapable of doing things by yourself.”
She found she was being touched almost every day and it troubled her so much that she started a campaign to highlight the matter.
Hundreds of tales of unwanted touching have since been shared by disabled women and men using the hashtag #JustAskDontGrab – and some give details of the kind of things that go wrong when people do this.
“Bus driver pushed my wheelchair sideways to centre me and touched cushion near my legs both w/o asking. Wasn’t malicious or creepy, just dehumanising, like I was luggage” wrote Kati on Twitter.
“Pushing my wheelchair can cause injury to me & expensive damage to my chair. Touching me even lightly can cause excruciating pain,” posted Kirsty Farnfield.
“A man just tried to ‘help’ me by pushing me off a tram before Barney said it was safe to go,” Stephen Anderson wrote on Facebook. “I applied reasonable force to get him away from me… When you have a guide dog in one hand and two bags in the other, it is extremely dangerous to try and throw me around.”
Other disabled people have reported broken knuckles and dislocated fingers as a result of being pushed or pulled without being consulted.
And Berg believes the problem arises because disabled people “inspire feelings of pity, guilt and fear”.
“One thing I want to get across is it’s OK to ask if we need help. I’m not opposed to being helped. There are times when I’ve needed help getting up a hill, for example. Image copyright Browyn Berg
“But don’t be defensive if we say ‘no’,” says Berg. “I’m not a a touchy person, I’m an introvert.”
For disabled women, some strangers giving assistance can border on unwanted sexual touching, which takes the problem to another level.
Dr Kavanagh says that around twice a month she experiences men who “grope me, make inappropriate sexual comments or try and physically stop me leaving a location”.
She says: “Being touched by strangers happens every single day and even those well-intentioned touches – I’m not a slim lady so when someone grabs my arm they’re often grazing a bosom – it’s just a very intrusive and personal act without my consent.”
Dr Kavanagh says the seriousness and frequency of the problem makes her feel like an “oddity” who needs assistance.
“Disabled people can be independent and that is something society shouldn’t be frightened of.”
Tiffany, 7, Models In Fashion Weeks Despite Hidden Disabilities
Tiffany Halliday has multiple hidden disabilities, but is not letting any of them hold her back.
The seven-year-old from Sheerness, Kent, has genetic issues including an extra chromosome, multiple heart defects, respiratory problems, hypermobility and hearing loss.
After getting involved in local pageants to build her confidence, she was talent-spotted and invited to model for major fashion brands in New York and London fashion weeks.
DWP Developing Welfare Robots
The UK government is accelerating the development of robots in the benefits system in a digitisation drive that vulnerable claimants fear could plunge them further into hunger and debt, the Guardian has learned.
The Department for Work and Pensions has hired nearly 1,000 new IT staff in the past 18 months, and has increased spending to about £8m a year on a specialist “intelligent automation garage” where computer scientists are developing over 100 welfare robots, deep learning and intelligent automation for use in the welfare system.
As well as contracts with the outsourcing multinationals IBM, Tata Consultancy and CapGemini, it is also working with UiPath, a New York-based firm co-founded by Daniel Dines, the world’s first “bot billionaire” who last month said: “I want a robot for every person.” His software, used by Walmart and Toyota, is now being deployed in a bid to introduce machine learning into checking benefit claims. Advertisement
The DWP is also testing artificial intelligence to judge the likelihood that citizens’ claims about their childcare and housing costs are true when they apply for benefits.
It has deployed 16 bots to communicate with claimants and help process claims and is building a “virtual workforce” to take over some of the jobs of humans. One recent tender document requested help to build “systems that … can autonomously carry out tasks without human intervention”.
The developments emerged during a Guardian investigation into one of the most radical but least understood welfare reforms since the roll-out of universal credit that will apply to 7 million people.
The DWP believes welfare transactions could be handled more quickly, accurately and cheaply using robotic process automation and is developing it for use in UC.
But claimants have warned the existing automation in UC’s “digital by default” system has already driven some to hunger, breakdown and even attempted suicide. One described the online process as a “Kafka-like carousel”, another as “hostile” and yet another as a “form of torture”. Several said civil servants already appeared to be ruled by computer algorithms, unable to contradict their verdicts.
“We are striking the right balance between having a compassionate safety net on which we spend £95bn, and creating a digital service that suits the way most people use technology,” said a DWP spokesperson. “Automation means we are improving accuracy, speeding up our service and freeing up colleagues’ time so they can support the people who need it most.”
But Frank Field, chairman of the Commons work and pensions select committee, warned that vulnerable claimants “will be left at the mercy of online systems that, even now, leave all too many people teetering on the brink of destitution”.
“We’ve already seen, in the gig economy, how workers are managed and sacked, not by people, but by algorithms,” he said. “Now the welfare state looks set to follow suit, with the ‘social’ human element being stripped away from ‘social security’.”
Key details about the automation push remain secret. The DWP has refused freedom of information requests to explain how it gathers data on citizens. Simon McKinnon, the chief digital and information officer of DWP Digital, said this year it was developing a way to “build a holistic understanding of digital personas”, but refused to say what information was gathered to do this.
The ministry has previously told parliament it gathers data from private credit reference agencies, the police, the Valuation Office Agency, the Land Registry and the National Fraud Initiative, which gather information from public and private bodies. But it is now declining to update the list, claiming it would “compromise the usefulness of that data”.
“There are concerns that government is accelerating the automation of the welfare system without a proper evidence-based consultation about its impacts,” said Dr Lina Dencik, co-founder of the Data Justice Lab at Cardiff University.
“Users have already raised significant problems and we need to understand which groups are more likely to be targeted by algorithmic decision-making than others to understand if it shows bias.”
The centre of the robotics drive is the DWP’s “intelligent automation garage”, a unit based in Newcastle and Manchester where 32 programmers design, build and run automations.
Staff are using UiPath to develop machine learning to check claims for fraud, which suggests welfare computers will autonomously learn and alter the way they make decisions with minimum human intervention.
One recent staff member at Newcastle told the Guardian they already “have ways of creating a digital image of somebody”. He stressed much of the work was secret, but said this did not mean it was against citizens’ interests.
The digital transformation is costing hundreds of millions of pounds. The DWP Digital’s budget has risen 17% to £1.1bn in the past year and IT firms have been awarded huge contracts to help run the system. The DWP is also rapidly expanding its own private technology company Benefits and Pensions Digital Technology Services, which recruited more than 400 staff in the year to April, while DWP Digital recruited 520.
A spokesperson for the DWP insisted it was using AI to help people find work, to reduce the burden on claimants to prove their circumstances, and to help vulnerable people access welfare more easily without having to provide evidence of their digital identity.
“We want to be supporting staff and citizens with the information they need, at the right time, and not disadvantaging those who are vulnerable,” they said.
However, there is evidence of rising error rates in parts of the welfare system that have already been automated. A system of realtime data-sharing between the HMRC tax office and the DWP about universal credit claimants’ earnings is triggering more and more disputes, with the rate rising fourfold between May 2017 and October 2018, according to the government’s own figures, with up to 5,700 people a month affected.
PIP Claimant’s Choice Between Tablets Or Food
A disabled man said he has been forced to choose between paying for tablets or food after he was refused benefits.
Neil Alexander, who has had serious kidney problems since birth, said “it feels like they just want you to give and curl up and die” after he was turned down for personal independence payments (PIP).
Jessica Leigh, from Scope, said: “Fundamentally PIP is not fit for purpose. We need to see a system that provides support when people need it, not months afterwards having gone through a process of appeals.”
The Department for Work and Pensions said it is committed to ensuring disabled people get the support they entitled to.
A judge has given doctors the go-ahead to perform an abortion on a woman with severe learning disabilities who is 12 weeks pregnant.
Mr Justice Williams heard that a GP had recently discovered that the woman, who is in her 20s but has the mental age of a toddler, was pregnant.
He was told that a police investigation was under way.
The judge said the woman may have been raped or been made pregnant by a man who also had learning disabilities and a lack of understanding. Police would carry out DNA tests in a bid to establish the identity of the father, he was told.
He analysed evidence at a hearing in the court of protection, where judges consider issues relating to people who lack the mental capacity to make decisions, in London on Friday. Advertisement
Bosses at an NHS hospital trust asked him to allow doctors to perform a surgical termination.
A lawyer representing the trust said the woman had lived with foster carers for most of her life.
The barrister Eloise Power said the woman’s foster parents were sure that an abortion was in her best interests.
Power said medical specialists and council social workers involved also all agreed that a surgical termination was the right option.
Williams said medics could restrain the woman in order to administer a general anaesthetic if necessary. He said the woman, who lives in the north of England, could not be identified in media reports.
He also said the names of the hospital and council involved could not be revealed in case that information helped identify the woman.
Williams said authorising the termination of a pregnancy was a “significant interference” in a woman’s autonomy.
But he said the woman’s best interests were the “lodestar” of his decision, and evidence showed that allowing the pregnancy to continue would harm her. Evidence showed that the pregnancy was already affecting the woman’s mental health and causing her to behave in a “somewhat more aggressive fashion”.
She would have to go for intrusive medical examinations if the pregnancy continued and would not be able to care for a child. He said more than 30 professionals had been involved in the case and all thought termination was the right option.
Being A Teenager With MS
Bella Parkhouse is a typical teenager. She spends her time juggling college, a part-time job and seeing friends.
But she’s also among the 10% of people who live with Multiple Sclerosis (MS) under the age of 18.
Bella tells us how she navigates treatments and medication as well as managing her social life and chronic fatigue.
She’s also had to confront a few bullies along the way but remains determined not to let MS dictate her life…especially when, she admits, she experiences FOMO – a Fear Of Missing Out.
Bella’s mum, Sarah, also gives a few top tips for parents on how to support your child with a chronic illness.
Disability Hate Crime Shocking But Not Surprising Says Campaigner
Shocking but not surprising is how one campaigner has described a rise in disability hate crimes.
Research by learning disability charity United Response found there were more than 6,000 reported cases in 2018-19, a rise of just under 12% in a year.
The police force area with the largest number was West Yorkshire (818), followed by Greater Manchester (464).
Chloe Tear, a disability blogger from West Yorkshire, said disabled people faced “malicious comments” every day.
The 21-year-old has mild cerebral palsy and is partially-sighted.
‘Really hurtful’
She said three years ago she was in a wheelchair when eggs were thrown at her.
“It really shocked me. The person who did it knew me, knew that I was an open book about my disability.
“It’s really hurtful when you spend your whole life trying to be positive about it.”
She said the incident, which she did report to the police, took a long time to recover from. Image copyright Chloe Tear Image caption Comments Chloe Tear has received include being questioned about her sight when sat on a train
Amy Williamson, 23, from Leeds, has Down’s syndrome and faced abuse from a group of boys as she got off a bus near her home.
“I think there were 20 of them, they were calling me names and saying mean stuff about my boyfriend.”
Her mother Karen said it severely knocked her confidence.
“Her independence has been affected. Even in her own street she doesn’t feel comfortable and safe anymore.”
United Response submitted Freedom of Information requests to 45 police forces across England and Wales.
It received disability hate crime figures from 34 forces, of which 27 gave figures for charges or prosecutions while 21 provided the numbers of disability hate crimes committed by repeat offenders.
In England and Wales, 6,263 disability hate crimes were reported in 2018-19, while in 2017-18 the figure was 5,599. In 2016-17 it was 4,079.
The charity’s figures also showed fewer people were being charged or prosecuted for disability hate crimes across England and Wales. Image caption Karen Williamson now meets her daughter after she faced abuse at a bus stop
West Yorkshire Police received 818 reports in 2018-19 – a rise of 53% on the figure for 2017-18.
The force said an element of the rise in reports could be attributed to its “high standards” in crime recording.
Supt Richard Close added: “Residents should be free to live their lives without fear, hatred or intolerance and there is no excuse for such behaviour.”
Ms Tear said: “I think the figures are absolutely shocking but I’m not surprised.
“The odd malicious comment is part of our daily life.”
She said more education was needed to address people’s ignorance and reliance on stereotypes.
“As a society we are getting better and hopefully the younger generation will grow up to be more respectful.”
Jobcentre chiefs have withdrawn a document on chronic illness after an outcry from disability campaigners.
The form asked claimants to describe their condition while avoiding words like “chronic” or “degenerating” – because they “sound worse than they are”.
It added people may want to “avoid terms such as depression, ME or low back pain etc and use more general terms” instead.
Disability campaigners said the “disgusting” wording “breaches our rights”, adding: “Our access needs can only be met by disabilities being properly noted”.
The Department for Work and Pensions (DWP) today confirmed the document was being withdrawn after concerns were brought to their attention by the Mirror.
It has not been confirmed how many Jobcentres the form was used in, but sources insisted it was only in use in “one area”.
The full context or purpose of the form – which included a Jobcentre logo – was not clear from a version posted online by campaigners.
However, it had the same wording as a “positive health statement” circulated by the Dorset NHS trust and dated to 2013.
The NHS Trust described the form as a useful aid to “think how you can present yourself as someone living with a health condition in a positive way”, when applying for a job.
Labour’s Shadow Minister for Disabled People Marsha De Cordova raised the document in the Commons.
She said: “It cannot be right that the department is expecting disabled people to downplay their disability or health condition.”
It was raised by the campaign group Disabled People Against Cuts in Sheffield, who tweeted: “This needs to be addressed NOW and without delay.”
Addressing Work and Pensions Secretary Therese Coffey, the group said: “Withdraw this disgusting publication, which breaches our rights, from circulation NOW.
“Our access needs can only be met by Disabilities being properly noted.”
A DWP spokesman said: “This was well-intentioned local advice but has been withdrawn, as we would always encourage jobseekers to speak freely about a health condition or disability.
“The number of disabled people in work is at a record high and we are proud of the support we provide such as grants of nearly £60,000 for workplace adaptions under Access to Work.”
Wheelchair User ‘Forced To Wet Himself’ After Buses Fail To Stop
A wheelchair user says he was “forced to wet” himself when he was left at a bus shelter for an hour.
Ryan McDade said he was passed by three Pronto buses in Mansfield, Nottinghamshire.
The 20-year-old said he felt “dehumanised” by the drivers and that the experience was “humiliating”.
Bus operator Stagecoach East Midlands wrote to Mr McDade to apologise after reviewing CCTV footage adding “we do not condone this type of misconduct”.
Mr McDade had spent time in Mansfield on Friday and was trying to return to Portland College, a residential specialist college near Ravenshead.
The musical theatre student, who has cerebral palsy, said: “We were waiting about an hour and in that time three bus drivers just drove past, one of them even opened the door to the bus and just said ‘no’.
“We were waiting so long that I was forced to wet myself, which is really humiliating.
“There was a lady sitting next to me, I cannot tell you the embarrassment.”
Mr McDade suffers from curvature of the spine, and therefore cannot use public disabled toilets.
‘It’s disgraceful’
He said it was the first time he was “point-blank refused” entry on a bus, but he said there was space in the wheelchair area of the buses.
“It was dehumanising, getting on a bus [as a wheelchair user] is a nightmare,” he said.
“The bus is my way of having independence, so if somebody were to say ‘you can’t get on the bus’ like they did on Friday, it’s like somebody’s taking away that independence.” Image copyright Daniel Mullins Image caption Stagecoach East Midlands – which operates Pronto buses – said it was “extremely concerned” by what happened to Ryan
Ceri Smith, policy and campaign manager for disability charity Scope, said: “It’s disgraceful that Ryan had to endure this horrendous experience.
“Public transport should serve everyone in our society, but disabled people are being let down every day.”
Stagecoach East Midlands operates the Pronto bus service.
In a written response to Mr McDade’s complaint, the company said offered its “sincere apologies to Ryan”.
It added: “Two of our staff have failed to comply with the company’s policies in respect of both stopping for passengers and disability awareness.”
The drivers will be “interviewed under the company’s formal disciplinary procedure”.
A spokesperson for the operator added: “We are very disappointed that Ryan was let down on this occasion.
“We have also spoken directly to Ryan’s mother to apologise.”
Campaigners have forced a government U-turn after demonstrating that chronically ill claimants suffering severe pain were wrongly denied disability benefits on the basis that they were not taking powerful, opiate-based painkillers.
Bristol Law Centre said disability benefit assessors routinely assumed that if a claimant had been prescribed an “over the counter” drug such as paracetamol then their pain must be mild or moderate, and denied or reduced benefits accordingly.
It estimates that thousands of claimants nationally have been incorrectly refused disability benefits in this way.
Campaigners had argued that it was unfair and dangerous for assessors to use painkiller strength as a proxy for the level of illness because GPs were reluctant to prescribe stronger opiates because of the harmful side effects. Advertisement
The law centre said the guidance had encouraged ill and disabled people claiming Personal Independence Payments (PIP) and Employment and Support Allowance (ESA) to demand stronger drugs from their GP as a guarantee of benefit eligibility.
“Every year, thousands of claims for disability benefits are refused because of an over-reliance on analgesics as a guide to pain levels. The signal these assessments send to claimants is that they must go back to their doctor and ask for stronger pain relief,” said Andy King, a benefits adviser at Bristol Law Centre.
Public Health England recently warned of the dangers of wrongly prescribed opioid painkillers for joint and back pain. Over half a million people had been on addictive opioid drugs for longer than three years.
The Department of Work and Pensions (DWP) has issued new guidance which makes it clear that “healthcare practitioners [disability benefits assessors] should be mindful that the level of analgesia used does not necessarily correlate with the level of pain”.
The law centre’s study of 39 benefit cases where claimants were in severe pain found that in almost all cases benefits were either wrongly refused or paid at too low a level. In 25 cases the severity of the patients’ condition was underestimated by assessors because they had been prescribed “mild” painkillers.
Several of the cases involved claimants with arthritis, fibromyalgia or degenerative spinal conditions who had reduced their dependency on powerful opiates on the advice of their GP. This was taken as proof by assessors that the claimants could walk 200 metres unaided – a key factor informing eligibility for PIP.
In at least one case assessors’ reliance on painkiller strength as an indicator of pain severity appeared to have more influence on the benefit decision than detailed written evidence of the severity of the illness supplied by the claimant’s NHS doctor.
Many of those refused benefits successfully appealed against the decision at tribunal. There, the court asked detailed questions about the pain and claimants’ daily activities before concluding that the assessors – employed by private contractors Atos and Maximus on behalf of the DWP – were wrong.
Bristol Law Centre said it welcomed the DWP changes – the result of over a year of pressure – but would continue to monitor the situation to ensure that the new advice was properly rolled out to assessors.
A DWP spokesperson said: “The type and level of medication is one of a number of factors taken into account when carrying out an assessment, which considers all aspects affecting a person’s functional ability. We constantly review our guidance and have updated it in line with expert medical opinion.”
Ken Butler of Disability Rights UK said the study showed that assessors were not giving proper consideration to claimants’ own evidence about the severity of their condition. “It’s clear that opioid prescription and use alone cannot be the sole judge of how someone is affected by their ill health condition or disability,” he said.
Wrexham FC In Row With Disabled Supporters’ Group
A row has broken out between a football club and its disabled supporters’ group.
Wrexham FC said the club’s Disabled Supporters Association (DSA) went “on strike” after it had a ticket and an on-pitch presentation request refused.
The DSA usually assigns the spaces for wheelchair users but the club said it had to do this itself at a recent match and is now running it itself.
The DSA said the issue was about the presentation.
Wrexham Supporters Trust, which runs the club, spoke out following a “growing social media storm”.
The row centres around the club refusing a request for complimentary match tickets and a pitch presentation.
The DSA is part of Allies in Access group and it wanted a similar Midlands-based association to visit for the Ebbsfleet match on 12 October and have the presentation on the pitch.
The club said it was unable to help due to “competition rules” but an offer remained open for a pitch-side photo call on a non-match day as a compromise.
However, following the disagreement and “strike”, the club’s statement said the DSA’s “presence will not be required on the platform… for the remainder of the season”.
“Our disabled supporters rely on the provision of services and we have to ensure they continue to receive a high-quality service without the potential for any possible disruption as it really makes a difference to their match day experience,” the statement said.
“This has been a difficult decision to take by Wrexham AFC but we must ensure the services for some of our most vulnerable supporters are never placed in jeopardy and taking these services in house is the most sensible solution at this time.”
The DSA said the “sour point” was the club’s response to refusing the presentation.
The DSA claimed it had been told that was because it was not a club-related matter.
A statement added: “Rightly or wrongly, this was taken very negatively by members of the Wrexham DSA committee who took it in the context of ‘despite the hours we give to the club on a match day, we are not club related’.”
It said that left some committee members frustrated and said they would not be on duty for the game against Ebbsfleet.
Black, Deaf Student Used Frustration To Do Well At Uni
I feel like I’ve got two identities: being deaf and being black. It’s a double struggle to fit in and I’ve had to work 10 times harder than my classmates. [A recent report from the National Deaf Children’s Society, which analysed government data, found deaf pupils in England are struggling “at every stage of their education”.]
I was born hearing but became ill with meningitis when I was a baby. After that I became deaf. I grew up in Barking and Dagenham, in East London, with my mum, who works as a caterer and a cleaner at two different colleges. I was bullied in primary school – people would say “ew, you’ve got hearing aids in” – and felt like I didn’t belong. By the time I got to secondary school I had accepted my identity, but that didn’t mean everyone accepted me. I communicate using sign language, so people would stare and I knew I stood out.
I worked hard in secondary school, but was still told I wouldn’t be able to go to college or university. I was told deaf people didn’t go on to higher education. “Which deaf people do you know who have gone to university?” someone asked. The truth was I didn’t know any, because I had no role models.
This made me frustrated, and my frustration came out as anger. The main way I dealt with my anger, though, was positive. I channelled it into a determination to show people I could achieve, despite my disability.
I got my GCSEs and applied to do BTec business level three at Barking and Dagenham College. I spent two years at the college and the vocational course was fantastic. I met so many different professional people, I had a mentor and people supported me. I’m now able to study a degree in politics and economics and have completed my first year at Leicester University.
However, the discrimination hasn’t gone away. The first person I met when I got to university immediately made a racist joke. He said: “I’ve got loads of black friends, don’t worry.”
I also get combined prejudice for being both black and deaf. I chose a white hearing aid because I like it and I’m proud of who I am, so I don’t mind if people notice it. But recently a deaf woman pointed at me and said: “Look at him, his hearing aid doesn’t match his skin colour!”
It’s difficult to keep calm all the time. I try to stay positive, but quite often I feel like I want to give up. When that happens, I tell myself I’ve got to look to what I can achieve next. That keeps me going.
I made a few friends at uni last year, but so far I feel I’ve missed out on the full university experience. Next year, I’m transferring to Leeds; it’s a bigger city and I think there will be more deaf students, so I’m hoping I’ll feel less isolated.
I want to talk about my experiences and show young deaf students that it’s possible to go to college or university and achieve things. I got a 2:1 at the end of my first year of university, which I’m proud of, and last year I was named Leidos Career Ready UK Student of the Year.
I want to tell other deaf black students to keep working hard. Have the right attitude and arrive on time, because you can achieve anything if you stay strong. To young people with disabilities, I say keep your identity and be proud of it. Society will always try and push you aside; show them you’re not going to disappear.
Sia Reveals EDS Diagnosis
How One Inter-Abled Married Couple Stay Together
Ron McCallum and Mary Crock share an office in their Sydney home. The couple live together, teach together and work together. In 2017, they wrote a book about disabled refugees together. Both are law professors – Crock in public law and migration, McCallum in industrial law – and both are passionate about social justice. Their chairs are back to back and a portrait of McCallum, painted by Crock, hangs on the wall. But, says McCallum with a laugh: “It’s easier to share a bed than an office.”
They have been together for more than 34 years. They met at a dinner party in Melbourne in 1984, when she was 25 and he was 35. McCallum, who has been blind since birth due to retrolental fibroplasia (RLF), heard her “beautiful mellow” voice across the table. When he introduced himself, she said: “You are obviously an RLF child.” As the daughter of Australia’s first full professor of ophthalmology, Gerard Crock, she was at ease in the company of blind people. McCallum was captivated: “Her voice, her breathing, her inquiring mind and her scent overwhelmed me,” he writes in his autobiography.
Crock was also drawn to McCallum. After their second meeting a few months later, she knew they would be together. “I remember walking on the beach thinking, ‘What will it be like married to a blind man?’. Not ‘Is this going to happen?’ But ‘What will it be like?’”
He proposed six weeks after that second meeting. “We were sitting on the couch. I said ‘Anyway I think you’ve just got to marry me, will you marry me?’. And she said, ‘Yeah, I guess.’”
They married and soon became parents to three children. Then in 1991, Ron was appointed professor in industrial law at the University of Sydney and the family moved from Melbourne to Sydney. Away from their wider families, in a city where they knew only five people, both working full-time with three young children, it was a challenging and stressful time.
“We’re still standing is all I can say,” Crock says. “I think chaos theory came into it. The children will tell you that they are all excellent cooks. And they will tell you ‘We learned everything we know from our nanny’.”
There was little time for their relationship. Their solution was what they call “48-hour holidays”. McCallum explains: “That’s all the time we had. [We’d say] ‘Let’s go somewhere for a day’. Or ‘Let’s go to a conference and sleep somewhere’.”
Common intellectual interests and working in the same field has its benefits. They often read and discuss each other’s academic work. “It’s a rare privilege to have somebody who can read everything that you write and make really good criticisms of it,” Crock says.
They don’t always agree. McCallum remembers teaching a joint class on labour law and migration, and after he’d made a point, Crock turned to the class and said she disagreed with everything he’d said. “I said ‘Could you please give the class reasons?’ And they were good reasons.” While they debate academic issues, they share a similar worldview. Says Crock: “There was some sympathy between the way that we thought when we met [and] it’s a world view that we very much developed together as well.”
In 1995, Crock also began lecturing at the faculty of law at the University of Sydney, working in the same building as McCallum. While it was “a godsend” in many ways, Crock was conscious her husband was the boss. “We’ve both had to make compromises, I think at different times … At the same time, I think I’ve felt over the years that I’ve had to make myself invisible as Ron became more and more senior.”
McCallum’s blindness has its own challenges. Crock says they made conscious decisions early on about the extent to which she helped him. “We have been careful to create boundaries so that I haven’t been his full time carer.”
Their physicality is part of their connection. “Touching is a very important part of a relationship,” McCallum says. “And I think it also can help when things can get a bit rocky … And I’m not meaning anything erotic, but it just can help. It’s almost like the oil can smooth [things] over.” Although she hesitates when he raises the topic, Crock agrees: “It‘s actually a good point to make because Ron’s dependent on me for his mobility a lot of the time [so] we do touch each other a lot more.” Advertisement
McCallum is quick to stress they’re far from perfect. “We do have our moments and we’ve had our disputes.” However, conflict has its place. “Showing your children conflict and resolving conflict is as important a life lesson as you can get,” Crock says. “Because it shows the children that you can still be your own person. And you can disagree with someone sometimes quite profoundly but still, at the end of the day, love them and continue the relationship.”
McCallum agrees: “I think the best thing we can give our children is [the sense] that we’ve had a reasonably good relationship that they’ve grown up in, and they’ve seen us in our underwear at one place. And they’ve seen us argue, and they’ve seen us in good times. And they know that we’re very committed, and committed to them.”
Commitment is what keeps them together. “It’s about reflecting on how your life is going to be and what you want to achieve together. Rather than just having personal goals, you end up having goals together,” Crock says. “And I think one of the important things for me is that it’s a relationship that involves creativity and fun.”
And, while shared interests are important, so too are individual activities: “We have also managed to leave each other to have a bit of personal space as well. Over the years, [Ron’s] pushed me to do a lot of things that have taken me out of my comfort zone. He’s also pushed me to do things that he knows that I’m passionate about that he can’t share in.” For Crock, that means painting – and she has her own space for this. “I have a shed” she says pointing to the garden. “That’s Mary’s shed out there.”
Benefits managers have been caught on tape making horrifying comments about claimants.
One advocated blowing them up with a grenade, another accused them of getting money for nothing while the disabled were accused of “faking it.”
In one disturbing taped conversation a manager says: “The police sometimes have sting operations where they gather people together.
“We should nominate one person to throw a grenade in.”
Another reveals a case manager railing at claimants, who can be out of work because of ill health.
They rant: “It does my head in. They’re getting something for nowt, they don’t really have to do a great deal to get it. And they still whinge.”
Another says they “have absolutely no time” for claimants with depression and anxiety.
A regular caller with four children, including one who is severely disabled, is branded a **** after a call.
One manager asks: “Has she got a disabled child?” before another says: “She’s not disabled. She acts it.”
Benefits charities were yesterday shocked at the tapes, passed to the Sunday Mirror by a whistleblower.
Jamie Grier, of benefits support charity Turn2us, said: “Stigmatising people experiencing a financial crisis is divisive and wrong.”
The Liberal Democrats’ Shadow Work and Pensions Secretary Tim Farron added: “This kind of language and behaviour is nothing short of heartless.
“The Conservatives have created a toxic environment stemming from social security cuts that have left thousands unable to afford the basics.”
Department for Work and Pensions Staff were recorded making the slurs working at a call centre in the Midlands.
They complained of juggling 700 cases each and said hated Universal Credit is a nightmare to grasp.
One confesses: “I don’t know what I’m doing half the bloody time.”
UC combines existing benefits to “simplify” them, but has been slammed after suicides following errors or withheld payments.
Our whistleblower said: “These people hold claimants with thinly-veiled contempt.
“They become so ground down by the scale of the job they give up being nice. I’ve seen them trying to outdo the other in all the mean things they say.”
The Sunday Mirror is not publishing the recordings to protect the anonymity of the whistleblower, who fears reprisals from the DWP if their identity is discovered.
The DWP said: “The Sunday Mirror has not provided us with the recording, or any further details. We are therefore at this stage unable to verify the provenance of this recording.
“We are however deeply concerned by the allegations, and are taking them seriously.
“We will urgently investigate this matter, so far as we can with the limited information we have.
“Where wrongdoing has been identified, we will take appropriate disciplinary action.”
What Happens When A Guide Dog Gets Fat?
When Damon’s guide dog DeeBee visits the vet for a check-up there is some unexpected news.
He is weighed and found to be 5kg overweight – that’s slightly more than your average cat.
Damon must get DeeBee back to a healthy weight or risk having him temporarily taken away while he is slimmed down.
So what can you do when your guide dog gets out of shape?
Find out in the latest edition of Ouch – the irreverent disability talk podcast from BBC News.
With Damon Rose, Niamh Hughes and Beth Rose. A full transcript is available here.
Only One UC Con Artist Preying On Claimants Prosecuted So Far
With many thanks to Benefits And Work:
Only one fraudster has so far been prosecuted for preying on claimants and stealing their universal credit (UC) advance payments, the government has admitted.
Back in July we reported on what had become a huge problem of claimants being defrauded of UC payments, with even the DWP admitting that a devastating 10% of all UC advance payments may be for fraudulent claims.
Fraudsters obtain claimants details by pretending they are applying for a government grant for them. They then apply for UC on the claimant’s behalf and pocket most or all of the advance payment.
According to messages on a private DWP board, fraudsters are mocking the DWP by making successful claims with ridiculous details, including:
Children named Ha, Ha and Ha;
Children named Lisa, Bart and Homer – of Simpsons fame;
Landlords called Harry Kane;
A 19 year old student with six blind children.
One DWP official claimed that in their region 200-300 claims a day are fictitious, with £1,200 to £1,500 in advance payments for each claim.
Yet, with many thousands of such fraudulent claims having been made, the DWP have admitted that they are investigating just 107 individuals in connection with the scam.
Worse still, so far only one person has actually been referred to the crown prosecution service (CPS). They were successfully prosecuted, but so far no other cases have even got as far as the CPS.
The DWP makes much of its National Benefit Fraud Hotline aimed at targeting claimants – very often absolutely unfairly.
Yet to have put just one con artist preying on claimants before the courts so far is dismal and will do little to deter criminals from continuing to defraud claimants.
The Fashion That Lets You Feel Music
Twin bloggers Hermon and Heroda lost their hearing when they were children but new clothing using haptic sensors means they can enjoy a night out dancing to music.
Special software captures the music, interprets it and then transforms it into touch data which is sent wirelessly to their shirts.
BBC Click finds out more.
Simon Baron-Cohen: We’re Failing Autistic People
As a graduate in the 1980s, Simon Baron‑Cohen taught autistic children at a special school in London. Little was known about autism then, and people often misheard him, assuming he taught “artistic children”.
“People would be ashamed if they had an autistic child, or ashamed of saying, ‘I am autistic’, whereas now it’s treated as more ordinary and there’s less judgment,” he says. “In the 1980s, autism was seen as categorical, so ‘you either have it or you don’t’ … nowadays, we talk about a spectrum.”
Today, Baron-Cohen, 61, is a world expert on autism, a Cambridge professor and director of the university’s influential Autism Research Centre. There is also greater awareness of autism, a lifelong condition affecting how people interact or process information.
Estimates suggest one in every 100 people is on the autism spectrum (700,000 adults and children), from those with severe developmental disabilities needing intense support, to those with milder traits. Well-known autistic people include campaigner Greta Thunberg (who calls her “difference” a superpower). As a cognitive neuroscientist, Baron-Cohen has helped focus attention, from his pioneering psychological studies (autism was first diagnosed in the 1960s in the UK) to founding the UK’s first diagnosis clinic in Cambridge 20 years ago with charitable funding (today the centre is NHS-run). Advertisement
Yet his latest research reflects how improved awareness and understanding of autism have not led to improvements in the lives of people with autism. In the studyexploring how autistic adults experience disproportionately more “negative life events”, 45% of the 426 participants say they often lack money to meet basic needs (compared with 25% of non-autistic people) and 20% have been sexually abused by a partner (compared with 9%). The research, involving questionnaires created with autistic people, suggests why those with autism may experience more depression.
These findings add more weight to existing evidence about the significant challenges facing autistic people. Diagnosis can take years; children face cuts to special educational needs provision; just 16% of autistic people had jobs in 2016 (compared with 80% of non-autistic people); and they are among those locked up in secure hospital-style units instead of living in communities. The Autism Act a decade ago obliged the government to create a strategy to improve support, but legislation has fallen short of promises.
“Many autistic people and their families will tell you that while the [government’s] autism strategy has raised awareness, nothing much has changed on the ground in the last 10 years. And, despite our research flagging up suicide risk and other kinds of vulnerability, too many autistic people are languishing unsupported because there’s no new money in social care for autism. This is unacceptable,” says Baron-Cohen.
He hopes his centre’s recent findings will encourage better practical help, such as a lifelong support worker, “so there’s a pathway from discovery in the lab through to changing people’s lives”.He says: “The old style of doing research was, without [us] realising it, arrogant, in that the scientists thought up the questions and then did it. The new way is to involve people from the outset … to codesign the studies, and check the relevance and wording.” Gaps between research and practice influenced plans for a £35m Autism Centre of Excellence by 2025. Aiming to be the UK’s first national clinical and research centre for autistic people, it will combine academic expertise with practical help. In theory, children or adults referred by a GP would get a diagnosis, then immediate support from specialists like psychiatrists, employment or benefits advisers. “Locally, we’ve got this research centre and world-famous university, and all around it people are sitting on waiting lists, unable to be seen, and they’re struggling, so it’s about closing that gap,” he explains.
Baron-Cohen’s late sister, Suzie, had severe learning disabilities. She was sent to an institution aged two (common advice from doctors at the time). Later in life, he moved her to supported housing near his own home. She died in 2014. In an emotive eulogy, he recalled of his sister: “Our lives were richer for having shared the journey with her.” He talks movingly of her and how she influenced his work. “Maybe because I had a sister with a disability I was already sensitised to and fascinated by people who think or develop differently,” he says.
He has won national and international awards for researching the biological, hormonal and genetic factors in autism. Yet Baron-Cohen’s theories remain controversial. The extreme male brain concept, outlined in his provocative book, The Essential Difference, describes men’s brains being wired for systemising and women’s for empathising. This led to criticisms of “neurosexism” and gender stereotyping, which could risk misdiagnosing or underdiagnosing autistic women, and also of fuelling the idea that people with autism have no cognitive empathy. In his defence, he stresses that “equality between the sexes is very important”, adding that his research explores groups of males and females “on average”, adding “this is not about individuals”. With empathy, he argues that while autistic people may struggle to imagine others’ emotions, they feel emotion if others are upset (the distinction between cognitive and affective empathy).
In future, he hopes the idea of neurodiversity becomes more mainstream. “Brains come in different types and they’re all normal,” he says. “What we want is that one day every workplace will be diverse – we already encourage that with gender and ethnicity, but the next frontier is neurodiversity and it will become ordinary. People won’t think twice about it.”
Beyonce’s Father Mathew Knowles Reveals Breast Cancer Diagnosis
Mathew Knowles, the father of pop singers Beyonce and Solange Knowles, has revealed he has been diagnosed with breast cancer.
The 67-year-old has spoken about his condition in an interview with Good Morning America, which will air on US TV network ABC later.
A teaser for the interview was posted on Tuesday to coincide with the first day of Breast Cancer Awareness Month.
Male breast cancer is rare and usually occurs in men over 60.
In the trail for the interview, Knowles is shown being asked how he broke the news to his family.
The entrepreneur and public speaker announced he would make “a special announcement” on Wednesday’s programme.
Knowles, a former Xerox salesman, is best known for putting together Destiny’s Child, the band that launched eldest daughter Beyonce to stardom. He also managed her solo career until 2011.
He divorced Beyonce and Solange’s mother Tina in 2011 and has since had two more children with his second wife Gena.
Breast cancer in men
It is much rarer than it is among women – in the UK, 319 men were diagnosed with breast cancer in 2017, compared with around 46,000 women, according to the Office for National Statistics.
The outlook for men varies depending on how far the disease has spread by the time it is diagnosed, the NHS says.
Signs of breast cancer in men can include a lump in the breast, the nipple turning inwards and fluid oozing from the nipple. Find out more on the NHS website.
Alexandra Adams On Discrimination As A Deafblind Medical Student
This is a clip from a 5 minute interview which aired in the last 10 minutes of today’s programme.
Parkinson’s At 30
A Londonderry man who was diagnosed with Parkinson’s at the age of 30 says more young people need to be aware of the disease.
Ronan Coyle first noticed the symptoms at 24 but only found out what the problem was six years later.
“People think I’m drunk when I walk down the street,” he told BBC Radio Foyle.
Now 37, Ronan plays golf and squash and likes to swim to take his mind off the disease.
A spokesperson for Parkinson’s UK said playing sport “helps ease the mind”.
Parkinson’s is thought to be linked to a chemical called dopamine, which is lacking in the brains of people with the condition.
There are more than 40 symptoms and these can include vomiting as the body struggles to process food in the gut.
Parkinson’s can also affect people’s mood. Often a person will feel they have got to grips with their condition and then a new symptom will emerge.
It was while studying for his Irish history and politics degree that Ronan first noticed the symptoms.
“I was writing notes for an essay and I couldn’t write properly,” he said.
“Come exam time, I was under a lot of stress. It got really bad.
“Then I noticed my walking was funny. I went to a couple of neurologists and they more or less said you have a tremor and that it was nothing to worry about.”
When Ronan turned 30 he was referred to a neurologist in Belfast. After a number of scans it was confirmed that he had the disease.
How people react
A survey of more than 2,000 people for Parkinson’s UK, to mark World Parkinson’s day, found that 87% of people with the condition had faced discrimination or harassment.
- 24% of people had been told they were “too young” to have Parkinson’s
- 22% said their slurred speech or poor balance had been mistaken for drunkenness
- 32% said their less expressive facial expressions had been mistaken for unfriendliness
- 10% said they had been laughed at
Click here for more information on Parkinson’s Disease.
“Once I left the office, I went into the car and cried for a couple of minutes and then phoned my mum,” Ronan said.
“I don’t particularly shake all that much. I would be rigid and stiff and my balance would be bad at times.
He added: “Whenever I was first diagnosed I didn’t want to know much about it and didn’t want to hear any horror stories. I kept myself in the dark more or less for a couple of years.
“It’s not a great thing to hear that you have Parkinson’s but it’s by no means the end of the world. You can live a full and happy life.”
Ronan works as a civil servant in Derry and he and his partner Elena, who is from Mexico City, got married this time last year.
He says Elena has been a rock for him throughout.
“I met her in Ballina, County Mayo. She was working there. We have been together for two and a half years.
“She helps me so much with my condition. She gives me an incredible amount of support.
“Always encouraging me. Always by my side.”
Tories Vow To Improve Universal Credit
With many thanks to Benefits And Work.
Therese Coffey, the secretary of state for work and pensions, told the Conservative Party conference today that she will work to improve universal credit, in stark contrast to Labour’s undertaking to abolish the benefit.
Coffey told the conference that:
“Universal Credit provides a safeguard for the most vulnerable in our society. It supports strivers, who are not content living a life on welfare.”
In contrast, she said:
“But Jeremy Corbyn would scrap our benefits system that makes work pay.
“With no alternative – from the Party that only knows how to trap people on benefits.”
Coffey said that her priorities for her department are:
“To continue to improve Universal Credit to ensure people get the money they need in a timely manner, are helped into work, and onto an escalator up to better work.
“To help with the cost of living across the country to ensure that people feel secure in their homes and can support themselves financially.
“To support everyone in society – especially disabled people – so we all can share in the success and prosperity of this county.”
Coffey ended with a promise to help claimants find their ‘dream job’:
“Which is I have today announced a further £4 million package to support people to find not just any job, but that dream job.”
Denise Welch Praised For ‘Brave’ Depression Videos
Actress Denise Welch has been praised after sharing her experience of the “unwelcome visitor” of depression.
The Loose Women panellist posted a series of videos on Twitter, in an attempt to explain depression “to those who are fortunate enough not to suffer”.
“As someone who professes to be a mental health advocate I have to share the bad times with you,” she said.
One mental health charity described Ms Welch as “courageous”.
Ms Welch, 61, said on Sunday that she began to feel unwell at the weekend after experiencing what she described as a changing atmosphere.
She said: “How I describe it is the colour goes out of my life and people I am around that I love being with I don’t want to be around.”
She added: “Things that I have to look forward to I don’t want to be a part of.
“And even just things I have to do this week, I start stressing about maybe having to withdraw from something and maybe letting somebody down.”
Ms Welch posted a follow-up video on Monday captioned: “Today is a better day. No swirls. He’s leaving I hope.”
“I think the visitor made a short visit and is on his way out,” she said.
The actress was praised by people on Twitter who said she was “increasing understanding”.
Another person wrote: “I’ve genuine tears in my eyes watching this, knowing the struggle all too well as someone who has clinical depression.”
‘Cruel, isolating, invisible’
Ms Welch said she wanted to “chronicle this journey” as her emotions changed.
“The fact that the video resonates with so many people… it is a horrible illness, it is cruel, it is isolating, it is in the main invisible, but it can be terminal,” she said.
“That is why it is very, very important for me to use the slight platform that I have to talk out.”
Simon Blake, chief executive of Mental Health First Aid England, told the BBC that Ms Welch’s videos “bring into the open” discussion about conditions like depression.
He said: “We often see Denise as a smiley, cheery person and it breaks the stigma about what a person with depression looks like.”
Mr Blake added that the reaction to the videos “also shows social media is a force for good” and that “it is brave and courageous to be open and vulnerable”.
Mental health charity Mind said it commended Ms Welch “for sharing such an intimate insight into her experience of living with depression”.
Ms Welch’s representative said she is being supported by her family and friends.
With many thanks to Benefits And Work.
Updated guidance issued to PIP health professionals (HPs) today should improve the chances of success for claimants who are managing chronic pain whilst trying to avoid becoming dependent on painkillers or who have other reasons for using only limited amounts of painkillers.
The latest update of the PIP Assessment Guide warns HPs that the level of analgesia ( pain relief medication) used by a claimant is not necessarily a reliable indication of how much pain they actually experience.
The guidance points out that GPs are encouraged not to prescribe strong painkillers for long-term pain because of the harm they can do the patient.
In addition, some patients may be intolerant to analgesics or they may be using other methods of controlling pain.
HPs are told that instead of relying solely on the amount of medication as evidence, they should expect the claimant to be able to describe:
- the location,
- type,
- severity and
- variability
of the pain they experience and the impact it has on their daily life.
If you experience chronic pain, whether you are using strong painkillers or not, it is important that you give as much information as possible about your pain and how it affects you.
If you give detailed evidence about your pain, preferably in writing throughout your ‘PIP 2 How Your Disability Affects You’ claim form, then it should now be harder for a HP to dismiss your pain on the grounds that you have not been prescribed strong pain killers.
The result should be, in theory at least, more claimants getting the correct award without having to go to an appeal tribunal.
The full, text at paragraph 1.6 on page 26 of part one of the PIP Assessment Guide reads:
HPs must also take into consideration the invisible nature of some symptoms such as fatigue and pain which may be less easy to identify and explore through observation of the claimant. HPs should be mindful that the level of analgesia used does not necessarily correlate with the level of pain. GPs are encouraged to avoid prescribing strong painkillers for long-term pain as the harms usually outweigh the benefits and there could also be specific reasons why painkillers are not prescribed e.g. intolerance, or the use of other methods of pain relief. When pain is a significant symptom we would expect the claimant to be able to describe the location, type, severity and variability of the pain they experience and the impact it has on their daily life. The HP can assess the disabling effect of the pain by considering such description (where applicable) along with all other aspects of the case, e.g. disease activity/severity, effect on daily activities, treatment, pain relief, pain management strategies, examination findings and informal observations.
Labour Would Scrap UC
With many thanks to Benefits And Work.
The Labour party have announced plans to radically reform universal credit (UC) before scrapping it altogether, if they win the next election.
Benefits proposals being put forward by the party include:
- Removing the 5 week wait for a first payment of UC and making an interim payment after two weeks
- Ending the requirement to claim UC online
- Hiring an extra 5,000 advisers to help people unable to make an online UC claim
- Scrapping the two child limit, the benefit cap and the bedroom tax
- Ending benefits sanctions
- Abolishing the DWP and replacing it with a Department for Social Security
According to Margaret Greenwood, shadow secretary of state for work and pensions:
“In an act of profound neglect, this uncaring government is pressing ahead with the roll out Universal Credit. This is despite the DWP’s own research that shows that nearly eight out of ten of those moving to Universal Credit are struggling with their bills.
“The Tories aren’t going to back down on this, but I am proud that the next Labour government will scrap Universal Credit and replace it with a social security system designed to end poverty, based on principles of dignity and universalism. The next Labour government will take action immediately and end the worst aspects of Universal Credit and abolish the two-child limit, which under the Tories is set to push up to 300,000 more children into poverty by 2024, and end the five-week wait.
“Labour will immediately suspend the Tories’ punitive sanctions regime that has eroded trust in the social security system and people’s right to support. Instead, we’ll replace it with a new system that emphasises tailored support, rather than meting out rigid requirements and punishments when they are not met.”
The Institute for Fiscal Studies, commenting on the proposals argued that they stop short of scrapping UC:
“The proposals specified today would, compared to current policy plans, top up the incomes of a significant number of low-income households – in some cases by £1000s per year. They do not, however, amount to anything close to a scrapping of universal credit. If that is ultimately the intention then we have yet to hear anything about what that would mean.
They went on to say, however, that the changes would improve the lot of hundreds of thousands of claimants:
“Reversing the two-child limit in means-tested benefits would mean that, in the long run, about 700,000 households with children would be better off than they would otherwise have been, by an average of £3,000 per year – implying a cost of about £2bn per year.
“Abolishing the benefits cap would benefit approximately 100,000 working-age families by an average of roughly £2,000 per year, costing around £200 million per year. The winners would be mostly people with several children or high housing costs, or both.”
Why Much Of The Internet Is Closed Off To Blind People
As our everyday world moves increasingly online, the digital landscape presents new challenges for ensuring accessibility for the blind. A recent court challenge against Domino’s pizza may be a watershed case guiding the rights of disabled people on the internet, writes James Jeffrey.
Each swipe 17-year-old Maysie Gonzales makes on her smart phone is accompanied by what sounds like the famous Stephen Hawking voice barking out orders at a relentless pace.
“Sometimes I speed it up to 350 words a minute, it depends what mood I am in,” says Ms Gonzales, who lost her sight when she was two years old through retinal cancer.
Screen readers translate on-screen information into speech or Braille. They have broken open the internet for people who are blind or visually impaired, and for those with other disabilities.
But the device only works effectively on websites that are compatible.
“Sometimes it can be horrible, it depends on how the website has been set up,” says Ms Gonzales.
If a website’s digital infrastructure hasn’t been correctly labelled, a blind person can be met with a barrage of “button! – button! – button!” or “link 1,752! – link 1,752! – link 1,752!” from that hyperactive mechanical-sounding voice. Image copyright James Jeffrey Image caption The pink markers on Maysie Gonzales’ laptop offer a tactile reference point from which she can better orientate herself
Hence the case Guillermo Robles, who is blind, brought against Domino’s Pizza after he was unable to use his screen reader to use the company’s website and mobile app.
A federal court agreed with him, and now Domino’s has petitioned the Supreme Court to hear Robles’ case, in what could prove a landmark battle over the rights of disabled people on the internet.
“This isn’t just about ordering the likes of pizza or surfing Amazon,” says Chris Danielson, a representative with the National Federation of the Blind (NFB). “People are doing everything online nowadays, so it’s about blind people being able to access the likes of online banking, applying for employment and doing the necessary online tests, accessing cloud-based tools in the workplace, and all the rest.”
It’s estimated that 7,600,000 Americans are technically blind – about 2.4% of the population – according to the NFB. Image copyright Joe Amon/Getty Images
“We’ve even been told by businesses before that they understand, but the fact is blind people are not a very big market,” Mr Danielson says. “That’s what we are dealing with.”
Nowadays signs designating access for shoppers with disabilities – from parking spaces to restrooms to dressing rooms – are a ubiquitous part of the retail landscape.
This is thanks to the Americans with Disabilities Act (ADA), the 29-year-old federal law that prohibits discrimination based on disability.
But ADA requirements that are relatively clear when applied to physical stores – such as determining where ramps should go and what height grab bars should be – become much more difficult to discern with a website.
“The online environment was never intended to be covered by the ADA,” says Stephanie Martz, senior vice-president and general counsel for the National Retail Federation (NRF), which along with other business groups like the Chamber of Commerce and the Restaurant Law Center has come out supporting Domino’s.
“The ADA took effect before the internet as we know it today existed, and more than 25 years later there is no clear objective guidance on what constitutes an ‘accessible’ website. There’s not enough clarity in the law to know what is accountable.”
But advocates like Mr Danielson counter that if one follows that logic then the whole US Constitution could be undermined. “If a 30-year-old law is deemed out of date and not applicable then that applies to a whole lot of laws.”
As e-commerce has grown, retailers are increasingly faced with ADA lawsuits over lack of accessibility, particularly for the blind or visually impaired.
Website accessibility lawsuits hit a record high in 2018, with retail being the most frequently targeted industry. More lawsuits were filed in court in the first six months of 2018 (1,053) than in all of 2017 (814), according to the NRF.
The likes of Visa and Target have lost such lawsuits, and earlier this year a class-action was filed against Beyoncé’s official website, alleging that Beyonce.com violates the ADA by denying visually impaired users equal access to its products and services.
“To be fair to businesses,” Mr Danielson says, “there are lawyers taking advantage of the situation, but cutting the legs from under the ADA is an overcorrection… and stops the flow of legitimate plaintiffs.”
Ultimately, those pushing for digital accessibility argue that businesses have no excuse for dragging their feet over it.
“It’s not hard to do, it should just be part of best practice, not an additional line item, just like making sure a website loads quickly is,” says Laura Kalbag, a website designer and author of Accessibility for Everyone.
“It basically just involves HTML coding, which even a blogger can do. If it is a huge website, it might take some time, but the work itself is not complicated.” Image copyright James Jeffrey Image caption A statue of a man and his guide dog interacting with a little girl outside the Texas School for the Blind and Visually Impaired
She adds it is a myth that making a website accessible makes it ugly, there is no correlation – you can still have snazzy images and graphics.
Ms Gonzales says that because she is also gluten intolerant, she likes to use Domino’s as it offers gluten-free pizzas, and she has managed to use its online site. But selecting toppings is tricky – and sometimes she has had to get her mother to step in.
That the courts are also stepping in is part of the problem, Ms Martz explains. “This should be dealt with by government and Congress amending the ADA.”
Any discussion of accessibility should look at the whole picture – a blind person can always ring Domino’s toll-free number and order that way, she adds.
“As a teacher who has to speak all day, sometimes, like everyone else, I don’t want to get into another conversation and just want to do it online,” Jeff Molzow, a blind instructor at the Criss Cole Rehabilitation Center which trains blind people to compete in the work force, says about why that toll-free number doesn’t always appeal.
“Also, I want time to peruse the menu and make up my mind – you can’t do that if you are speaking to someone on the phone.”
The Domino’s case is symptomatic, say many working with the blind, of the wider problem of how blind people, or anyone with a disability, are still not fully on society’s radar. Image copyright James Jeffrey Image caption Jeff Molzow at the Criss Cole Rehabilitation Center
“All the info is out there about digital accessibility. Tim Berners-Lee, the inventor of the internet, was discussing it in the mid-90s, and we have pushed it for years,” says Jim Allan, an accessibility coordinator at the Texas School for the Blind and Visually Impaired.
“But people still have low expectations of what blind people can do and don’t use their imaginations about the possibilities – until they are hit with the fire hose of info from the likes of us, after which they get it.”
The awareness of businesses and companies is improving but still slowly, says Mr Allan, noting that only federal and state websites are mandated to be fully accessible by all users. This despite digital accessibility being required by a much larger segment of society, especially as people age and start to lose sight and hearing.
“We treat disabled people as if they are different but that isn’t the case, as digital accessibility affects all of us,” says Ms Kalbag. “If nothing else, you should see it in a selfish way, as one day you will probably need this type of accessibility.”
It is the same in the physical realm, where the likes of wheelchair access ramps are gladly embraced by mothers with prams and cyclists.
But even when digital accessibility is achieved, challenges remain for blind people that are familiar to all.
“Sometimes I worry about using social media too much, like everyone else,” Ms Gonzalez says.
“But without my phone I would be very lost – I wouldn’t be able to do much and would be very dependent on others, when I prefer to do it on my own.”
Daisy-May Demetre At Paris Fashion Week
A nine-year-old girl who had both legs amputated walked in a show at the top of the Eiffel Tower for Paris Fashion Week.
Daisy-May Demetre, from Birmingham, is thought to be the first double amputee model to walk in the show.
Her father, Alex, said she “nailed it” and “is doing herself so proud”.
He said Daisy took homework with her to do around the show and after a “whirlwind” weekend was heading back to school as normal on Monday.
Daisy walked for Lulu et Gigi, whose founder, Eni Hegedus-Buiron, said she was “bringing awareness to the world”.
The nine-year-old was born with fibular hemimelia, where part or all of the fibula bone in the leg is missing, which led to her legs being amputated as a baby.
Mr Demetre said walking was “between five and seven times harder” for his daughter, “but you’d never know”.
He said there was no opportunity to practise her catwalk before the show, but Daisy was unshaken.
“She came out and posed really well, she just nailed it,” he said.
Daisy walked in New York Fashion Week earlier this year and Mr Demetre said they are exploring other modelling offers and opportunities for her.
She started modelling about 18-months ago and has worked for brands including River Islands, Matalan and Nike.
David Baddiel: Children’s Fiction Needs More Wheelchair Whizzkids
Disabled children have been “airbrushed” out of bestselling children’s fiction for more than a century in order to present an unrealistic version of the world, David Baddiel has said.
The comedian and children’s author criticised popular modern children’s books for featuring fewer disabled characters than were portrayed during the Victorian era, when children with disabilities often starred in bestselling novels, such as Tiny Tim in Charles Dickens’s A Christmas Carol.
Over the past 12 months, only one book in the top 100 bestselling children’s fiction titles featured disability and stated this in the descriptions provided by publishers, according to data from Nielsen Book research shared exclusively with the Observer. That book, about an amputee bank robber, was Bad Dad by David Walliams. Baddiel, who has just written his own novel starring a disabled child, said that among bestselling children’s stories “disabled characters aren’t represented enough, which is not just an issue for disabled people. In my opinion, it’s an issue for all children.”
He added: “Leaving [disabled people] out of children’s understanding of the world is wrong ethically and socially – and in terms of storytelling, because children do know what the world is like.”
Nielsen found that just 165 (or 0.2%) of the 77,000 children’s fiction titles sold in the past 12 months featured disability or disabled characters, according to the descriptions from their publishers. Nielsen also analysed the data about all the children’s fiction titles published since 1898 and found just 708 books containing these keywords in their descriptions.
Instead of excluding disabled characters from stories, which Baddiel describes as a “weird convention” of many children’s books, writers should be helping children understand that disabled people are not defined by their disability. “Somewhere in the children’s book universe, there exists a very old-fashioned notion that we mustn’t sully children’s innocence,” he said. “It’s not a question of teaching children about the world. It’s about reflecting the real experiences a child might have.” Baddiel was speaking ahead of the publication this month of his sixth novel for children, The Taylor Turbochaser. It stars Amy Taylor, an 11-year-old disabled petrolhead who transforms her motorised wheelchair into Baddiel’s version of the batmobile, but with added fish tanks, and drives her friends to Scotland on a cowpat-fuelled adventure.
Like Baddiel’s other children’s books, The Taylor Turbochaser is a story about a child whose wish comes true – not a novel about having a disability. And, unlike the disabled children in popular children’s classics such as Heidiand The Secret Garden, who miraculously learn to walk after they get some fresh air, Amy remains in her wheelchair at the end of the story. It is her unhappy, divorced dad who is healed most by her journey.
Baddiel was inspired by his memories of playing at driving his father’s Triumph Spitfire. He decided to write a novel about a child who could actually drive – and the idea of a disabled girl who wanted to “pimp her ride” popped into his head.
“Once I had that story idea, nothing could hold me back. The idea that you might not put a disabled character in a children’s book because of some weird convention – I don’t understand the point of that. You make your story richer by including diversity of experience. And, also, it’s real.”
He acknowledged that less famous writers may be more fearful about breaking conventions in case it alienates publishers or parents, and he feels lucky he can write about what he wants to. “Because I am a bestselling author, I have a certain licence.”
A report by the Centre for Literacy in Primary Education earlier this month further criticised the lack of diversity in children’s books. It found just 4% of new children’s books contain a minority-ethnic hero, and only 7% featured any BAME characters at all. The proportion of minority-ethnic pupils at UK schools is 33%.
Similar research, carried out by Guardian Books on the top 100 bestselling children’s picture books earlier this year, found that only five featured a BAME character in a central role. Only one included a disabled character, and she did not speak or play a main role in the story.
Other popular authors, such as Katherine Rundell, have also included disabled characters in their novels over the past year, and forthcoming titles from publishers suggest that in 2020 more writers will follow suit. In February, Walker Books will publish The Good Hawk, set in an alternative post-apocalyptic Scotland. One of the lead characters has Down’s syndrome. In April, Canongate will publish The Infinite, starring an autistic girl who is obsessed with numbers and can time travel.
Libby Clegg MBE To Become First Blind Contestant On Dancing On Ice
Scottish Paralympic sprinter Libby Clegg MBE is set to become the first blind contestant on Dancing On Ice when the show returns in 2020.
The athlete, who won a gold medal in the 100m at the 2016 Paralympic games in Rio, confirmed the news on Victoria Derbyshire on Friday morning (27th September).
“After Rio I achieved my ultimate goal and then I thought, ‘what else can I do?’ – this opportunity came about and I couldn’t pass it up,” she said. “I love challenging myself and experiencing new things.”
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Clegg is registered blind: she has a deteriorating eye condition called Stargardt’s Macular Dystrophy, which gives her only slight peripheral vision in her left eye.
Each week, she and 11 other celebs will skate with professional partners in a bid to make it through to the final and be crowned the Dancing on Ice champion. This year judges Torvill and Dean, Ashley Banjo and newcomer John Barrowman will be overseeing the events.
Tokyo 2020: Robotic ‘Power Assist Suits’ To Be Used At Paralympics
Robotic ‘power assist suits’ will be used for the first time at the Paralympics at Tokyo 2020.
With some athletes lifting more than three times their body weight, staff will wear the suits to help them attach and remove weights from barbells.
The suits will also be used to transport heavy objects at the Olympics and Paralympics, and to load athletes’ luggage on to buses at airports.
They will also be used at World Para-powerlifting events.
Power assist suits were used at the 2017 Para-powerlifting Japan Cup.
The 2020 Paralympics will run from 25 August to 6 September, and the Olympics from 24 July to 9 August.
Disability Golfer Brendan Lawlor Turns Professonal
Leading disability golfer Brendan Lawlor has joined Niall Horan’s management company Modest after turning professional.
Dundalk native Lawlor enjoyed a stellar amateur career which included winning tournaments in Germany, Belgium and Scotland this year.
The 22-year-old also competed at the World Invitational at Galgorm Spa & Resort in August.
“I believe this is the right time to turn professional,” said Lawlor.
“I am delighted to have signed with Modest Golf and am very excited for what lies ahead.”
Lawlor, who was born with a bone growth disorder which leads to shorter limbs, becomes the latest player to join Modest’s growing stable, joining European Ryder Cup player Tyrrell Hatton and leading Irish duo Leona and Lisa Maguire.
“We are thrilled and very proud to welcome Brendan to Modest! Golf,” said Horan.
“Brendan is an incredible athlete and one of the best disability golfers in the world. He is an inspirational character and has a genuine winner’s mentality.
“We can’t wait to work with Brendan and support him in his professional golf journey.”
Lawlor has turned professional at the right time given the European Tour’s drive for greater inclusivity.
It has joined forces with the European Disabled Golf Association (EDGA) to provide opportunity at events such as the Scottish Open and the season-ending DP World Tour Championship at the Jumeirah Golf Estates in Dubai.
There are also plans to have a full European Disability Tour by 2021
We Need More Disabled Actors Says Storme Toolis
The media doesn’t yet have the talent pool to cast enough disabled actors, actress Storme Toolis, who has cerebral palsy, has told the Today programme.
“It is challenging when you have a disability… but it is becoming prevalent in the arts.”
She plays Josephine in the play “A day in the death of Joe Egg” about the experience of bringing up a disabled child, based on a true story.
Review: A Day In The Death Of Joe Egg
A Day In The Death Of Joe Egg stars Storme Toolis in her West End debut. It is based on writer Peter Nicholls’ life with his daughter who, like the play’s protagonist, lived with Cerebral Palsy.
It shows the life of married couple Brian (Toby Stephens) and Sheila (Claire Skinner) and their severely disabled daughter, Joe Egg.
It was a very difficult play for me, as a person living with Cerebral Palsy, to watch. It is full of old fashioned and outdated attitudes towards disability and disabled people.
I particularly disliked the character of Brian and the couple’s friends, Freddie and Pam, who were particularly patronising towards Joe Egg, even trying to convince Brian and Sheila to have a ‘real baby.’
Knowing that the play is based on the writer’s personal experiences, I personally sincerely hope that he exaggerated the character of Brian a great deal.
There are moments of real humour in the script, especially Brian’s description of God as a rugby player!
Storme Toolis shows a great talent by playing a character far more severely affected by Cerebral Palsy than she herself is- and manages to steal the show, despite having the least lines to deliver.
A Day In The Death Of Joe Egg is at the Trafalgar Studios, London, until 30 November.
Booker Shortlist Is More Taxing For VI Readers
As a writer and a keen reader, our editor fully supports the campaign not to tax e-books and audiobooks.
If you want to plough through the Booker Prize shortlist before the winner is announced on 14 October, the pile of books in hardback will cost you just under £90.
But if you are blind or partially sighted and rely on audiobooks, you will pay around 50% more, in part due to the sales tax levied.
Publishers are calling for VAT on audiobooks and e-books to be axed.
They say it unfairly penalises those who struggle to read traditional books.
“It has been a long-standing principle that governments won’t seek to tax and provide a barrier to books, education and knowledge,” says Stephen Lotinga, chief executive of the Publishers Association.
A consumption tax of 20%, or Value Added Tax, is levied on all goods sold in the UK unless they are exempt, as are children’s clothes, most food, and traditional, printed books.
So while the higher price of audiobooks is partly down to the cost of hiring actors and studios to record them, they could be more affordable if they too were exempt.
Publishers are pushing for audiobooks and e-books to be treated the same way as printed books and hope that Chancellor Sajid Javid will make the change in this autumn’s Budget.
Forty-two senior figures from the UK’s publishing industry have signed a letter urging him to make the change.
In 2018, the UK publishing industry generated £3.6bn in total book sales, £2.9bn of which was from physical book sales and £653m from digital, according to the Publishers Association. Image copyright Ed Hill Image caption Mary Bish, who uses e-books, feels discriminated against on prices
At 88, Mary Bish still enjoys reading but suffers from macular degeneration and struggles to get to a bookshop or library due to mobility issues.
She says being able to get books on her tablet and enlarge the text is “absolutely brilliant”.
But she feels discriminated against when it comes to the price.
“It is unfair we should be taxed while people who read ordinary print books are not taxed,” she says.
“There are about two million people in the UK who are classified as visually impaired,” says Mr Lotinga.
“Obviously being able to listen to books or being able to manipulate the size of the text easily on a screen is hugely important to people who struggle to read.
“We want to make sure they’re not penalised on the basis of their disability.”
It is not only the partially sighted who would benefit, however, he argues.
The National Literacy Trust says one in eight disadvantaged children in the UK do not own any books.
Mr Lotinga says if books are available at low cost in digital formats, low-income families are much more likely to access them via their phones or tablets.
More than 100 MPs and several authors – including Stephen Fry, Helen Fields, Joanne Harris and Paula Hawkins – have expressed support for the campaign.
Family Faced £10K Bill To Move Away From Disabled Daughter’s Rapist
A mother who discovered her disabled daughter’s rapist had moved next door was told she would have repay £10,000 to a council to leave her property.
Leicester City Council said modifications made to her home would incur a fee if the woman left within 10 years of the changes being made.
But the local government watchdog ruled against the council, adding it should apologise.
The council said it was a “complex case” and it had accepted the ruling.
In a report, the Local Government and Social Care Ombudsman (LGO) detailed that in 2012 Leicester City Council gave the woman a Disabled Facilities Grant of £24,000 for improvements to the home.
But later the woman, who with diagnosed with cancer, found out a man who had raped her disabled daughter had moved next door, the Local Democracy Reporting Service said.
The LGO said he had “lived away for a long time” but moved back and was permanently living next door, prompting the mother’s decision to leave the property.
But she said the £10,000, which was expected to be repaid to the council restricted her opportunity to move.
After the daughter provided proof the rape did take place, the council changed its mind and granted an exception.
The LGO report concluded: “The last eight months have had an impact on both the mother and daughter’s mental health, with the daughter needing to seek support from the crisis team.”
It ruled Leicester City Council should apologise and provide proof of the apology.
A council spokesperson said the ombudsman initially found in the council’s favour.
They added: “The complainant then provided new information which we had not been able to consider before, and based on this new information we changed our decision and agreed for the £10,000 grant not to be paid back.”
They said initial evidence indicated repaying the £10,000 would not cause financial hardship to the family, but: “The Ombudsman then changed its report to find against the council, and instructed us to apologise for not taking all factors into consideration, and for delay, which we have done.”
A Disabled Victim Of Domestic Abuse Tells Her Story
To survive in the refuge, Sarah (not her real name) stores fruit and cereal bars to eat in her room. When we first talk in March, she has been there for a month after leaving her abusive husband. She had been sofa surfing with friends and family for a week while waiting for a place.
This is standard nowadays – research by Women’s Aid in 2017 found that 60% of referrals to refuges were declined, meaning that women escape abusive homes only to be turned away due to lack of space. But because Sarah is a disabled abuse victim, with several physical illnesses that leave her struggling to walk, as well as mental health problems, she at least got high priority.
Her husband, she explains, often used this against her. “He’d say that I ruined his life with my disability, that I couldn’t cope on my own.” Throughout their marriage, she was reliant on him to be her carer; a setup that became part of the abuse. He typically withdrew “care” – even food or water – if she broke one of his many rules, and threatened to call mental health services to get her sectioned if she didn’t do as he said. He was regularly violent, forcing her to stop taking antidepressants and other medication, while getting “angry with me for getting sick so much”. It was easy to isolate her: he would take away her Motability car, keeping her housebound for days or even weeks on end.
The refuge has enabled Sarah to escape the abuse, but she is now in danger in different ways– all because the refuge isn’t accessible. Her nearest bathroom is classed as “disabled friendly”, but it’s a shower over a bath, which is difficult for Sarah to get into without falling. Advertisement
Sarah sleeps upstairs (better than the ground-floor rooms, which had bunk beds she couldn’t climb into). But there’s no lift, meaning that it is an enormous effort for her to leave her room. Getting to the kitchen is a struggle, she is eating very little and has lost a lot of weight. She has already fallen down the stairs twice since being here.
Sarah stresses how kind staff at the refuge have been to her, but it is clear the lack of access, on top of everything else, is brutal. “I am at the end of my tether,” she says. “I’m just so tired and desperate.”
The scourge of domestic abuse in Britain has received fresh attention in the past few weeks, with outrage over the postponement of a domestic violence bill because of the suspension of Parliament, followed by the news that domestic killings of adults (the overwhelming majority of whom were women) reached a five-year high last year.
Disabled victims such as Sarah are at the sharpest edge of this crisis. Almost one in two disabled women will be a victim of abuse in their lifetime, according to research by Women’s Aid, making them twice as likely as women without disabilities to experience abuse. The charity Refuge, which runs 42 refuges across 23 local authorities nationwide, tells me that one-third of the women it assisted long-term in 2017–18 had one or more disability.
Despite disabled women being significantly more at risk than others, there is a notorious lack of provision to help them. Only one in 10 refuge spaces in the UK are accessible to people with physical disabilities, according to a BBC investigation in 2018.
“There’s a dearth of services for disabled survivors,” says Ruth Bashall, the director of Stay Safe East, one of just three specialist services for disabled abuse victims in England and Wales. “It means disabled survivors either turn to mainstream services – which try their best, but often don’t have the skills or facilities to deal with them – or they just don’t access services at all.”
Austerity measures in recent years have only exacerbated this. Figures obtained under the Freedom of Information Act by the Guardian in 2018 found that refuges for women and children in England, Wales and Scotland had seen funding cut by £6.8m since 2010, amounting to an average cut for each refuge of £38,000. Specialist services are often the first to go. In 2017, Women’s Aid reported that almost 20% of specialist refuges had closed since the coalition gained power in 2010. As Sarah says: “The refuge said it themselves, the cuts to services mean they’re unable to meet my needs.”
I have been speaking to Sarah on and off for the past six months as she tries to rebuild her life: navigating her way to secure a regular income, coping with her health and finding a safe and accessible place to call home. For disabled women fleeing abuse, cuts to refuges have combined with budget-slashing across vital services in recent years, from mental health care to changes in disability benefits. In an era where there is less and less help to go around, constantly battling to get the support Sarah is entitled to from the state is deeply stressful.
Take the benefit system. Because she is too unwell to earn a wage, Sarah relies on the out-of-work sickness benefit, Employment and Support Allowance, but is frantic about being transferred to the scandal-plagued Universal Credit system. Domestic violence charities and MPs had warned that the design of Universal Credit, in which benefits are paid to the main breadwinner, was enabling male abusers to withhold money from their victims. (The government announced a U-turn on the rules this year.) Sarah’s husband financially abused her throughout their relationship, forcing her to “lend” him £25,000 over the years – all of which came from her benefits. “He said I owed him because he looked after me,” she explains. He was already falsely receiving carer’s allowance – a benefit paid to people who provide substantial care for a loved one – and, before she escaped, she says he was about to get control of her benefits through her upcoming transfer to Universal Credit.
Sarah may now be eligible for more support as she is no longer in a couple – but in an era of pernicious benefit decisions, where people clearly not well enough to work are being told to do so, she is too afraid to contact the Department for Work and Pensions in case it risks her other benefits.
At the same time, Sarah has to find money for private therapy to help her deal with the trauma she has been through. Last year, she was treated on the NHS after she became suicidal as a result of her abuse, but she was only given a dozen sessions. She is now on an 18-month waiting list for further NHS counselling.
She has been seeing a private therapist twice a month to help her keep afloat. “But I just can’t afford it,” she says.
Without an accessible refuge, meanwhile, Sarah’s living arrangements have become increasingly desperate. She has tried sneaking into her old university library to sleep a couple of times. On other days, she spends a lot of time in her car. “It’s comfier, it’s warm and it’s safe,” she says.
Her cash-strapped local council could only offer her a hostel with men as an alternative. When I speak to Sarah again in late spring, she has been hospitalised with an infection – and her mood is even lower. What she really needs is someone to advocate on her behalf to help her get the housing, healthcare and benefits to which she is entitled, but such services are like gold dust now. “Budget cuts are leaving people like me … trying to navigate everything,” she says.
She has applied to the council for a permanent flat, but social housing lists are huge. In the meantime, she is trying to rent privately. It’s a risky solution; research by Shelter in 2018 found leading letting agents were discriminating against women and disabled people by not accepting housing benefit claimants, regardless of whether they could afford the rent. “I may have found one,” Sarah tells me in May about a flat listing. “They don’t take benefits, but I’m not required to tell them so I’m hoping it will be OK.”
A few weeks later, in June, I get an email from Sarah: the flat has fallen through. As she feared, the landlord said he couldn’t verify her income. The domestic violence charity that is helping her has offered a room in another refuge but it’s up a steep staircase. Unable to accept it, she has been discharged from their books.
Bashall tells me that awareness of the needs of disabled survivors in some circles is increasing – for example, her organisation currently has Home Office funding – but the climate of wider austerity is creating an ever-more dangerous environment. “The cuts in social care and mental health are pushing more disabled people to depend on their families or partners, and increase the risk of abuse,” she says.
This month, Sarah finally has some good news: she has found a home. The private rental isn’t perfect – the bathroom is down a set of steps – but it’s the beginning of a fresh start. The move has given Sarah the confidence to report her husband to the police, she says. “I’m hoping the end of the nightmare is in sight.”
Blind Engineer Creates A Smart Cane With Google Maps
We thought some of you might be interested in this– a smart cane with Google Maps and Bluetooth.
Unseen- The First Audiocomic For VI Readers
Comic books were not at the top of the list of the things that Chad Allen would desperately miss when he went blind, but they were certainly on there. Growing up in Rhode Island, a friend’s older brother had a huge collection of Marvel and DC comics, which the two younger boys would carefully remove from their protective sleeves to immerse themselves in the four-colour world of superheroes – especially Allen’s favourites, the Hulk and the Punisher.
From a young age, Allen was dealing with some of the effects of what would develop into full-blown sight-loss: “It started off as night blindness, and if I came out of a movie theatre into the sunlight I wouldn’t be able to see for a while.”
In 1988, when he was 15, he was diagnosed with Retinitis pigmentosa, and by the age of 28 he was completely blind. In those 13 intervening years, he had been determined to get as much out of life as possible: taking up competitive tap dancing, spending time in a fine art studio in Providence, Rhode Island, and even studying magic. (He has been a member of the Academy of Magical Arts in Los Angeles, where he now lives with his wife and son, for the past 17 years.)
The last comics Allen remembers reading are Garth Ennis and Steve Dillon’s Punisher series, which ran from 2001 to 2004. Those comics exemplify for him “the loss I felt of no longer having access to comics”. When he went blind, he turned to audiobooks and learned to read Braille, and returned to the prose literature he had loved, from Mary Shelley to Ray Bradbury. But he still missed comics. Then, he wondered: if you could listen to prose, then why not comics, too?
The rebuttal to that is obvious: comic books are a visual medium, a marriage of text and graphic art. But the idea wouldn’t go away. “The root of every comic is highly visual. But we don’t see those pictures with our eyes, we see them with our brain,” he says. “It’s the whole story that matters. It’s how we describe to our brains what that story is.”
The result is Unseen, an audio comic book. It is the first comic book aimed at blind people, featuring a blind character and made by a blind creator. The experience is akin to audio-described cinema: each panel is described in a matter-of-fact way, dialogue is spoken, and a “whoosh” sound indicates when the next page is starting. Set in the near future, the first issue opens on the US-Mexican border, where a tyrannical American regime is allowing immigrants to be experimented on for nefarious purposes. Into this scenario come Afsana, an Afghanistan-born assassin who also happens to be blind. She can also turn invisible – not unalike how blind and disabled people can be made to feel by the rest of society, who often choose not to notice them at all.
“I see the narrator as kind of fulfilling the role of the caddy in golf,” says Allen. “She is filling in the gaps, carrying the story along, allowing you to experience it all. Say an alien landed on Earth and you had to describe to them what a comic book was. You’d be doing that with speech. You’d be describing the action in a panel, and the dialogue. That’s exactly what I’m doing.”
The first issue, which is around 20 minutes long, was completed this year and featured in an exhibition at San Francisco’s Exploratorium museum of science, art and human perception. It proved immensely popular, prompting Allen to release it for a limited time as an audio stream. It ends on a cliffhanger; so listeners’ most frequent question is: “What happens next?”
“I’ve got 12 issues laid out,” he says. “Now we’re just planning out how to release them all.” And he has his audience: “I got a message from a man in China who said he had been listening to Afsana while walking down the street in Beijing. I find that incredible. Afsana is for everyone.”
• Unseen issue one is available on unseencomic.com
Over Half Of New ESA Claimants Placed In Support Group
With many thanks to Benefits And Work.
Over half of all initial claimants for employment and support allowance (ESA) are placed in the support group, but claims are taking longer to decide, according to figures released by the DWP last week.
For initial claims to the quarter to March 2019:
- 53% were placed in the support group. This is an increase of 5% since the previous quarter.
- 21% were placed in the work-related activity group, down 1%.
- 26% were found fit for work, down 5% since the last quarter.
The vast majority of work capability assessments are now repeat assessments for existing claimants rather than initial claims, however.
The number of initial assessments decreased in the quarter to March 2019 from 59,000 to 41,000.
Completed repeat assessments increased from 160,000 to 190,000. This represents a huge increase from December 2015 when there were just 35,000 ESA reassessments. The DWP’s explanation is that for almost two years, up to December 2015, they were focusing on initial assessments.
The proportion of ESA repeat assessments placed in the support group has increased from 72% last quarter to 75% this quarter, while the proportion with a fit for work outcome has decreased from 11% last quarter to 9% this quarter. 16% were placed in the WRAG.
The time taken to complete a WCA, from initial contact with the claimant to decision, increased from 15 weeks in December 2018 to 20 weeks in March 2019.
However, the time taken for a mandatory reconsideration to be completed fell from 15 days in December 2018 to 8 days in June 2019.
35% of mandatory reconsiderations result in a change in the decision.
The number of ESA mandatory reconsiderations has fallen dramatically, however, from a high of 22,000 in March 2017 to 4,700 in July 2019.
Appeal Tribunals Webchat Service Launched
With many thanks to Benefits And Work:
The Tribunals Service has introduced a live webchat service for queries, in addition to the telephone support already available.
The service is open Monday to Friday 8:30am to 5pm.
It means that claimants completing an online form to lodge an appeal, for example, can get support in a pop-up window without having to leave the page they are working on.
Users can download a copy of a transcript of their chat or receive it by email, if they wish.
People using paper forms connected to their appeal are also free to use webchat, by visiting the gov.uk site.
Claimant Sexually Assaulted During PIP Assessment
Anon
I was sexually assaulted last spring by a female nurse at my PIP assessment. She didn’t believe I was bladder and bowel incontinent, and said she needed to examine me. Not knowing this was wrong, or what she was about to do to me, I lay on the couch as asked.
She thrust her hand between my legs and placed it on my genital area, asking me to squeeze. I did as she asked, then she removed her hand, saying “there’s nothing wrong with you”
I felt defiled and abused. I went home in tears, and was later alerted to the fact by my disability advisor, that I could have urinated on the nurses hand, and had to go home soaked in urine. There were no handwashing facilities in the room, so the nurse would have had to leave me unattended whilst she went to the bathroom elsewhere in the building.
Her assessment was so poor and missed out all of my mental health issues since childhood, and went as far as to say I did not present as tearful, when she actually tossed a box of tissues across the desk towards me, as I was crying so hard.
I lost my award because of her assessment of me.
I complained to I.A.S.and an investigation took months, including a face to face interview. I gave a police video statement, and the police said as I had no witness and she denied touching me, there was no case to answer.
I have complained to the NMC and will very likeky have to attend court against the nurse. She left I.A.S not long after my complaint, but I do not know if she resigned or was sacked.
She now works somewhere for the NHS and is likely abusing other vulnerable disabled people.
I’m wondeting if anyone else encountered an assault at assessment? I have PTSD about the event and relive that vile morning from start to finish.
Thank you.
ATOS Miracles
Aphasia
Sitting at his writing table by the window overlooking New York’s East River, Irfan Malik watches the water rush past. He too is in a rush. There are so many poems to complete before the words escape him forever.
The 61-year-old Punjabi poet, who was once fluent in four languages, has aphasia — a variant form of Alzheimer’s disease. He is losing his words one language at a time.
On good days he rolls with the water and is able to write — although it can take hours to finish a line. On the off days — and they are advancing rapidly — he can’t access the words. On these days he just watches the river rush by.
Malik was diagnosed with logopenic aphasia in 2015. “‘Aphasia’ means impairment of language, ‘logo’ means shortage. So he is losing his language,” explains Amna Buttar, a geriatric doctor at New York University Langone hospitals, who is also Malik’s romantic partner.
Initially he only had language issues but this summer it was confirmed that he has Alzheimer’s disease with memory impairment as well as executive function impairment, Buttar says. “His dementia is still considered mild, but will progress.”
When it began, Malik compared what happened to his brain to a stroke. The damage was done and he would have to learn to adjust, he thought. He stammered and would get slightly annoyed when people finished his sentences before he could. But he had accepted this was the hand he was dealt.
He moved to New York City from Boston in 2016 to be with Buttar, a fellow Punjabi expatriate, who fell in love with his poetry before she fell for him.
They met in 2014. Since then, Buttar has happily translated Malik’s Punjabi verses for English speakers. She is a passionate fan of his work and is eager to share it with a larger audience.
These days she also translates his conversations. While Malik can still understand English, he has trouble finding the words to express himself. He will slowly lose his comprehension too.
“It is so sad that a person whose life is about words is losing his words,” says Buttar.
“It makes me happy to know he is continuing to write poetry,” she says.
Malik became a poet out of necessity.
While a student in Lahore, Pakistan, in the 1970s, he was set on becoming a fiction writer and was writing in Urdu, the official language of Pakistan. Once his first story was published, he started showing up at the Pak Tea House, a hangout for famous and up-and-coming writers and progressives.
“I was very young so nobody paid attention to me,” he says. So he and another young Punjabi writer, Zubair Ahmad, founded a youth group called Nae Uffaq (New Horizons). They held meetings and readings at another tea house and soon attracted a young following.
“We became their voice,” he says.
It was not a political organization, says Malik. “Not yet.”
But by 1977, after General Muhammad Zia-ul-Haq came to power in a military coup d’état deposing Pakistan president Zulfikar Ali Bhutto, that all changed.
“I decided now was not the time to write stories or fiction but now was the time to get involved in politics and I joined an underground Communist Party,” he says in Punjabi with Buttar translating.
He stopped writing prose and became a scribe for an underground political circular called Red Flag. Life was tough for young activists. Malik said they were routinely rounded up, imprisoned and tortured. Malik knew of three young leaders who had died while being tortured. With that in mind and when he was no longer impressed by the party leadership, he quit the party and fled Lahore for Sweden with his Swedish wife, who was 8 months pregnant with their daughter.
He wrote his first poem in a new language — Swedish — in a new city — Stockholm.
He was studying Swedish and working on improving his English, when a journalist asked him to write a piece about Bhutto for a Swedish magazine. This paved the way to a job teaching immigrant Pakistani children in Stockholm both Punjabi and Urdu.
He published an Urdu translation of nine Swedish short stories titled Ghongay (Seashell) in 1993.
“I left home at 5 a.m. and was home at midnight,” says Malik. “I didn’t have much time so I decided to do poetry rather than prose. It doesn’t take as much time or research as prose fiction does.”
He did most of his writing commuting between schools on the city bus.
He met the late Swedish poet Gosta Friberg. In 2002, Malik published Ghaira (An Ever Expanding Circle) a Punjabi translation of Friberg’s poems.
“That started my journey into poetry.” Malik says. He soon decided to write only in his mother tongue, Punjabi. When South Asia was divided into India and Pakistan after the British pulled out in 1947, Urdu and English became the national languages of Pakistan. Written Punjabi was given an Urdu script and as a result the language lost a lot of its power.
Malik wanted to give it back.
His first book of poetry Vich Jagratey Sutti Taang (Desire Is Sleeping Within Sleeplessness, 1992) is about love and sex and politics.
His next book Akath (Untold, 1998), is a collection of poems about a language that is dying. It is a philosophical metaphor. One poem gets shorter until there are no words left and the book ends with several blank pages.
Malik relies on pauses to punctuate the words that paint his poems. Those silent spaces have always held as much importance as his carefully chosen words. Now as he writes about facing his illness, pauses take up even more space.
His third book Nun Guna (The letter N, 2000) plays with the structure of language.
Malik can no longer read that first poem he wrote in Swedish or speak to his first child in her mother tongue. That language disappeared first.
His English words are evaporating, too — gone before they reach the tip of his tongue. These days, it’s a struggle, but he can have conversations in Urdu and while he can still find words in Punjabi, he has trouble expressing himself in deep intellectual ways, says Buttar.
Malik can trace the onset of the disease back years before the official diagnosis. He was living in Boston with his second wife, an American he met in Stockholm, and their two children. He was working in the IT department at Harvard University when he first noticed a stammer as he searched for words. It was about 10 years ago.
By the time he was diagnosed in 2015, his marriage had unravelled and he had met Buttar. He was on disability from his job at Harvard and the prognosis depressed him.Get some good advice in your inboxGet expert advice on life and relationships with the Star’s Advice newsletter.Sign Up Now
After months of wallowing in despair, Buttar said to him. “You have a choice — stay depressed or do something about it.”
He chose to continue sharing his poetry. He contacted friends in Pakistan, across the United States, in Canada and Europe telling them he would be travelling and asking if they would arrange readings.
“Poetry is such an intimate thing,” Malik says of his preference for small gatherings.
Malik had five readings booked in Pakistan before he arrived which lead to further readings over the two weeks he was there. The same thing happened in San Francisco and Vancouver where there are large Punjabi communities.
Each year since including this year, he has continued these poetry tours. In 2018, he gave readings in Toronto, Stockholm and London.
“Some of the people who came to my readings knew my poetry. Some others didn’t but when they heard, they became my fans,” he says.
Malik writes about romance, spirituality and politics from the point of view of a man in exile. Different themes are seeping into his latest work which reflects his changing outlook on life. He wrote Call of Mystics at the table by the East River.
Tongues have gotten stuck to palate/ When you close your eye/ You see white light/ Flowing in water/ Rushing water/ Black water/ My heart desires/ This water to show me pictures / Drakes, catfish, frogs/ And Shah dolay de chohey (Microcephalic children considered mystic) / Then all of us join in Bhangra dance (Punjabi folk dance)/ Dam a dum mast qalandar/ Dam a dum mast qalandar (Sufi mystic chant)
Longtime friend and established Lahore-based literary writer Zubair Ahmad says Malik has a formidable presence among the post modern Punjabi poets who make up the Western Punjabi literary movement that started after the partition in 1947.
“Every poet has his inner river wherein he fulfils the water of his creation,” says Ahmad. “To me (the basis of Irfan’s poetry) is life abroad,” says Ahmad. “His source is not old classical Punjabi poetry or folk literature. He is a different kind of poet. His diction is not traditional and his poetry stands apart,” Ahmad says. “Anti-traditional, avant-garde and new poetic diction — he has made his place.”
Malik moved away from poetry during his years at Harvard, preoccupied with everyday life — work, family and taking advantage of the free Harvard education available to employees. He took courses in writing, theatre and acting and started the South Asian American Theatre there.
Eight years went by. When the memory lapses started, directing and acting became too challenging. One day he came across his poems and “I dropped my books in the sea. I needed to get back to it.”
Since then he has compiled and published two books of poetry Dooji Aura (The Other Woman, 2015) and his latest collection of selected works and some new poems he wrote about his disease titled Chhanday Agay Kayser, (Poetry for Saffron Flowers, 2018).
“Experimental, postmodern, non-linear, pithy, and self-reflexive are all apt descriptors for his poetic compositions,” wrote Saeed Ur Rahman, in a review of Malik’s last collection in Pakistani news magazine TNS. “Punjabi is a lucky language if Malik keeps on producing such refreshing work.”
At his readings, Malik often is accompanied by an English translator. Several of his poems have been translated into English, Swedish and Urdu and appeared in literary journals such as Salamander, a Boston-based magazine.
He has the title for his next collection Awan Waley Din Chutti Mangdey Nein (Coming Days Are Asking For Time Off.)
“In it there is only one romantic poem,” says Buttar. “It is about me. The rest are about Alzheimer’s and his disease and his feelings about his disease.”
As Malik continues to write, he is also focusing on getting more of his poems translated into English so his children will have access to his life’s work when he is gone.
“They don’t know my language and they don’t know my poetry,” he says.
It’s not easy. Nothing is easy for Malik anymore.
“It is tough for both of us,” says Buttar.
“Being a geriatric doctor, I know what is to come, so half the time I live in denial and half the time I know too much and it is very stressful trying to deal with it,” she says.
“But the hardest part is knowing he is going to forget about me. ”
Meningitis Awareness Week
Life is very different for Lesley Hart since she had meningitis nearly 10 years ago.
“I’m no longer Miss Independent. It’s impacting more and more as time goes on. But I live each day as I want to.”
Lesley is one of nearly 2,500 people who develop bacterial meningitis and meningococcal disease each year in the UK.
The Meningitis Research Foundation says the right support is key for people like her.
To mark Meningitis Awareness Week, it has released a survey showing that, while many know the condition can kill, very few are aware it can cause ongoing side-effects.
In the poll of 2,000 people, 87% underestimated – or did not know – that people who contract bacterial meningitis can be left with long-term problems.
And 90% didn’t know deafness is a common after-effect of meningitis.
Meningitis causes swelling in the lining of the brain. It is caused by a viral or a bacterial infection.
Viral meningitis usually gets better on its own. And while most of those with bacterial meningitis who are treated quickly will also make a full recovery, it can lead to serious long-term problems. One in 10 cases are fatal.
In Lesley’s case, she sought medical help when her usual migraine symptoms failed to improve.
She was admitted to hospital – and at one point her parents were told she had just six hours to live.
Lesley, who is from Hereford, says: “‘Meningitis is an infection I never thought I would get.
“My after-effects are wide and varied including a brain injury and short-term memory problems. I can struggle with holding information and I have tinnitus.
“I have nerve damage and I don’t feel hunger or thirst. I struggle to keep my feet warm. My skin grows funny on my feet and so I have deep-tissue dermatitis.
“When I was discharged I did not receive aftercare automatically, I have had to fight for every single appointment.
“Once I was referred to the brain injury team they were amazing though. He was finishing my sentences about what I was struggling with.
“It was great to be finally listened to and validated”
‘Cost can be immense’
Lesley now lives in a bungalow controlled by smart text, and has meals delivered, which she can heat up. “I have forgotten I am cooking things and leave them to burn”.
But the illness didn’t only change her health.
“My relationship has ended. I have two amazing friends, but I lost most as I couldn’t go out clubbing, and alcohol has a very negative impact on me. I was no longer deemed as ‘fun’.”
Lesley now works two days a week. “The brain injury team suggested giving up work completely, but I’m too stubborn. I also couldn’t cope with my own company every day.”
Vinny Smith of the Meningitis Research Foundation said: “While many are aware that meningitis costs lives, fewer people know about the damage the disease can do to people’s long-term health and their future.
“The cost to people can be immense and sadly some never fully recover, so the right support is essential.”
PIP Claimant Made To Simulate Wiping Bottom At Assessment
When Two Comedians With CP Fell In Love
When we put three disabled comedians together round a picnic table we hadn’t banked on hearing one of the best disability love stories we’ve ever heard.
We’re a hard-bitten cynical bunch at Ouch sometimes but this was a beautiful moment from Spring Day about her relationship with BBC Three’s one and only Jerk, Tim Renkow.
The story packs even more of a punch when you find out about her history and how much fun they’ve been having as a couple ever since.
Features the “catholic cure for stammering”, body positivity and more in the podcast that does disability differently – almost like it’s normal.
Melissa Blake
When Melissa Blake shared a blog post she’d written about Donald Trump on social media it went viral.
But most of the thousands of comments she received weren’t criticising what she’d written, but how she looked.
Melissa, 38, has the genetic bone and muscle disorder Freeman-Sheldon syndrome – a rare condition that affects the mouth, face, hands and feet.
“There were comments from people calling me ‘ugly’ and saying ‘she looks like a parade balloon,'” Melissa tells Newsbeat.
The final straw came when a particularly nasty commenter suggested she should be banned from posting pictures of herself online because of how she looks.
“I thought, well, I’m going to do the opposite and show them that they’re not going to get the better of me.”
In response to people calling her ugly, Melissa, who is a freelance journalist and disability blogger, then shared three selfies of herself on Twitter.
Melissa’s tweet was met with a positive response online and to date has had over 22,000 retweets and over 256,000 likes.
She says being judged on her appearance during her 14-year-career as a journalist is something she’s “come to expect”.
“I find this is something a lot of women who put themselves out there face – they are subject to visual attacks.” Image copyright Melissa Blake Image caption Melissa is touched by the support her selfie post has received
Melissa has had over 26 operations to straighten out her joints, hands, knees and treat her scoliosis – a condition where the spine twists and curves to the side.
She says it’s been hard at times to ignore the cruel comments she’s received.
“I’d be lying if I said they didn’t bother me and it’s hard not to get down on yourself.
“These people are just sat at home hiding behind their keyboards. I don’t think they would say half of what they say on the internet to someone’s face.”
But whenever she feels down, she looks at everything she has achieved so far.
“What I’ve overcome helps put things in perspective,” she adds.
Melissa also has a message for the trolls who may have insulted her and then seen her viral selfie post.
“I hope my selfies help them see there is a human on the other side of the computer they’re insulting.
“I think it just goes back to treating people how you want to be treated. I know that sounds so simple and cliché, but I think it’s true.”
George Wildgust- Oldest Known UK Man With Downs Syndrome
A man, whose family believe he is the oldest person in the UK with Down’s syndrome, has said dancing keeps him young.
George Wildgust, who celebrated his 77th birthday last month, was not expected to live past the age of 10.
People with the condition are expected to live to their 50s these days but the life expectancy was much lower when Mr Wildgust was born in 1942.
His niece, Nikki Wright, said he loves to watch Strictly Come Dancing and dance around his care home in Nottingham, where he has lived since 1993.
Children With SEND Marginalised In Mainstream Schools
Children with special needs and disabilities are being marginalised by mainstream schools in England, according to a report by the National Audit Office (NAO) which says the system incentivises them to be less inclusive.
The NAO accuses the government of misjudging the financial impact of its changes to education, with rising numbers of pupils with special needs unable to be accommodated in mainstream schools following a combination of funding strains, off-rolling and exclusions.
This has resulted in local authorities having to break their budgets to fund additional places in special schools, including in more expensive independent schools, its report says.
The investigation found that mainstream schools had incentives to avoid enrolling pupils with special educational needs and disabilities (Send), because of the additional costs imposed on school budgets and from the impact on the school’s league tables.
“Stakeholders in the sector have raised concerns that the demand for special school places is growing because the system incentivises mainstream primary and secondary schools to be less inclusive,” the NAO said.
“Mainstream schools are expected to cover the first £6,000 of support for a child with Send from existing budgets and cost pressures can make them reluctant to admit or keep pupils with Send.
“Another barrier is that schools with high numbers of children with Send may also appear to perform less well against performance metrics.”
The NAO’s figures showed that while the number of pupils with high needs has risen over the past four years in special schools, alternative provision and independent special schools, the number enrolled in mainstreams schools was still lower in 2018 than in 2014 or 2015.
A spokesperson for the Department for Education (DfE) said the government has committed to providing an extra £700m next year to help educate children with Send, along with launching a review of support.
“We have improved special educational needs support to put families at the heart of the system and give them better choice in their children’s education, whether in mainstream or special school,” the DfE said.
Gareth Davies, the head of the NAO, said: “While lots of schools, both special and mainstream, are providing high-quality education for pupils with Send, it is clear that many children’s needs are not being met.
“I therefore welcome the DfE’s announcement of a review into support for children with Send, following our engagement with them on this issue over recent months. We hope the review will secure the improvements in quality and sustainability that are needed.”
The report noted that pupils with special needs were more likely to be permanently excluded than those without special needs. Pupils with Send accounted for nearly 45% of all permanent exclusions and 43% of fixed-term exclusions in 2017-18, despite accounting for only around 20% of the pupil population.
“Evidence also suggests that pupils with Send are more likely to experience off-rolling – where schools encourage parents to remove a child primarily for the school’s benefit – than other pupils,” the NAO wrote.
The 2014 education reforms replaced statements of special education needs with education and health care (EHC) plans, but the NAO said the DfE misjudged the financial consequences: “The department expected that the benefits and savings would significantly outweigh the costs of moving to the new system.”
Tim Nicholls, head of policy at the National Autistic Society, said ministers need to use the review announced last week to address the system’s serious problems.
“We hear awful stories every day of autistic children who are being held back from getting the education they deserve because schools don’t understand or can’t meet their needs. This can be devastating for them and their families, and mean they lose all faith in the system. This detailed NAO report shows the extent of this unacceptable situation,” Nicholls said.
Disability, Culture And The Fight For Independence
Gazala Iqbal, who is paralysed on her right side, was so mollycoddled by her family that she was 16 before she learned to make a cup of tea. “Mum had to go into hospital. I suddenly had two siblings looking up to me but I didn’t know how to do basic things. Everyone had always done everything for me. I felt useless.”
Iqbal, now 46, was overprotected at home and her sense of dependency was reinforced by patronising attitudes from health and social care professionals. One district nurse told Bradford born and bred Iqbal that she spoke really good English “for an Asian woman”.
Such experiences drove her to do self-esteem classes and courses such as cooking. Today she is a confident, married mother of three living in an adapted property. “I’ve fought for my independence, but lots of people don’t know how to, or families don’t understand. They want to protect you, but they’re hindering you, and on top of that you get the professionals,” she says.
Iqbal’s story is echoed in new research by user-led charity Asian People’s Disability Alliance (APDA) into the barriers to independence for disabled Asian women. The report, Humare Avaaz (“our voice” in Urdu), follows 18 months of community research involving 90 women with a physical or learning disability, mental health issues, long-term condition or caring responsibility.
Ignorance of health and social care among families, APDA’s findings suggest, is compounded by professional assumptions. While the authorities are aware of the low or late uptake of services, the report states, they “appear content to presume that this is a choice made by ethnic minority communities”. Advertisement
The report, funded by Disability Research on Independent Living and Learning (Drill), is particularly critical of social care for undermining disabled Asian women’s independence through funding cuts and welfare reform. Social care, particularly where outsourced, is described as “a fragmented, pressurised system that did not appear to care”.
“This report highlights the unknown and often forgotten cultural and social barriers for disabled Asian women,” says Zeenat Jeewa, APDA’s chief executive.
For Iqbal, a large barrier was that family members assumed she would always “be looked after” by her parents. Shani Dhanda, 31, who has the brittle bone condition osteogenesis imperfecta, had a similar experience. Dhanda, an events manager and disability rights campaigner, lived at home until her late 20s. She says: “There was never an expectation that I’d get married or move out. When I was learning how to drive, people who’d known me my whole life were shocked – but why wouldn’t they think I’d want to do the same things they do?”
Sanya Shah (not her real name), 69, is a wheelchair user. Until she was 44, she lived with her parents but now has help from a care agency. Shah has good support now but she says a previous carer left her in bathroom halfway through a strip wash because the 15-minute visit had ended. There are at least 1 million disabled people from black and minority ethnic backgrounds in Britain, and research shows that 25% of people with learning disabilities entering adult social care will belong to minority ethnic communities, up to 2030. Sue Bott, director of policy and research at Disability Rights UK, which manages Drill in England, says Asian women need more information so they can “find out what’s on offer to support them to be more independent, and feel safe when approaching service providers for help.” Bott also argues for more funding for the voluntary sector .
There are solutions. Bradford council is embedding a human rights approach into its social work. Over the last two years, the learning disability team has made support more accessible, encouraging engagement with the Asian community.
“People are more likely to check out what’s available in the voluntary sector first, so we need to be working in partnership with the private and voluntary sector,” says Fazeela Hafejee, Bradford’s community learning disability team manager.
A Department of Health and Social Care spokeswoman says: “It’s unacceptable for disabled people from any background not to receive the support they need to access health or care services. We expect [health] trusts to make arrangements to accommodate their needs and local authorities must assess people’s needs and provide support if needed.”
Iqbal has a solution: “The government needs to ask disabled people what they want. If a disabled Asian girl asked me for help, I’d start by asking her ‘What do you want from your life?’”
Amputee Peer Support Group
When Lisa became an amputee, she noticed the lack of support for amputees. She decided to do something about it and made her own peer support group.
MPs Call For Pavement Parking Ban Across England
Student With Stoma Accused By Wetherspoons Staff Of Taking Drugs
A student who was accused of taking drugs while using a disabled toilet at a Wetherspoons pub is calling for better awareness of invisible disabilities.
Amber Davies, 21, from Builth Wells, has a stoma after being diagnosed with ulcerative colitis aged 13.
While on a night out in Birmingham, she was “grabbed” by a bouncer after coming out of the disabled toilet.
Wetherspoons said staff apologised for the “confusing situation”.
Amber posted an open letter on her Instagram account detailing her experience, saying the door staff “very happily and very openly accused me of snorting, dealing and having sex in the disabled toilet for ‘there is no other reason I would need to visit it so often'”.
“I got grabbed by a female bouncer and my boyfriend by a male bouncer, we were accused of using them [the disabled toilet] for the wrong reasons,” Amber told the BBC.
“She [the bouncer] was quite reluctant to listen to my side of the story, I said it bluntly and I didn’t raise my voice once.” Media captionAmber has a stoma after having her bowel removed
Despite gaining access to the locked disabled toilet using a radar key, staff “kept shouting” and her boyfriend, who had gone in the toilet with her, was taken outside.
“I was upset at the time, we hadn’t done anything wrong, I spoke well considering. I was more annoyed that people were allowed to behave that way,” she added.
“[It’s] just completely unacceptable and they’re such a big chain, you’d think they’d have training or be knowledgeable before grabbing us.”
Amber, who is about to start her third year at Cardiff University, said she had come to expect “funny looks” but not the kind of treatment she received at the Dragon Inn in Birmingham. Image copyright Google Image caption Amber and her friends were enjoying a night out in Birmingham when the incident happened
In her post she said her stoma “needs constant care” and can be emptied up to 15 times a day, “it can make going out, especially on nights out, a pretty daunting prospect”.
The 21-year-old described her disability as a “chronic, debilitating, lifelong illness”.
She contacted the chain to complain about her treatment and has been offered a gift card in response. Image copyright Amber Davies Image caption Amber was diagnosed with ulcerative colitis aged 13
A JD Wetherspoon spokesman said: “A female member of door staff spoke with Ms Davies, who explained her disability.
“Staff expressed that if this had been known beforehand, or an explanation given sooner, the situation could have been avoided.
“Staff listened at length to Ms Davies’ points, never once questioning her disability and apologised for the confusing situation on both sides.”
How To Be Autistic
A woman has written a “brutally honest” account about being diagnosed with autism later in life in the hope others will “get the help they need”.
Charlotte Amelia Poe, 30, discovered she had the condition when she was 21 as she said “no-one ever went back to basics”.
She said her book, How to be Autistic, would have changed her life if she had read it as a child.
“If I can help one person, then it’s all been worth it.”
“I fear I have made myself incredibly vulnerable in writing it, but it felt necessary – important – to do so.” Image copyright Charlotte Amelia Poe Image caption In her video blog, Ms Poe reflected on years of anxiety attacks
In 2018, Ms Poe won the inaugural Spectrum Art Prize for her short video about being autistic, filmed by herself in her bedroom.
In it, she sits on her bed hugging a pillow, and cries as she describes clinging to the edge of tables “as another wave of panic crashes over you”.
Judges praised it for being both “bleak” and “beautiful”.
The self-taught artist, from Blundeston, Suffolk, said winning the award had opened up a “new chapter”.
“I was in a bedroom with a computer, and now I’m here.
“I’ve had messages from people saying ‘that’s me, right there, that’s me’, and that feels huge.” Image copyright Charlotte Amelia Poe Image caption Charlotte Amelia Poe says she wants to help people get diagnosed
She said she hoped her book would prevent others from missing out on opportunities she felt she had missed out on because of her later diagnosis, such as going to university.
“There’s a whole generation, at least, of people who don’t know they’re autistic, and I feel this book could be the spark that leads to diagnosis.”
Ms Poe said she still struggled with anxiety but that it was getting better. She said she wanted to inspire others to “make their voices heard”.
“There is a huge gap in history where autistic people should be.
“Now we have an opportunity, a moment, to create an autistic revolution.
“I hope to … create a discussion and a movement that allows for autistic people to be seen as equal and vital members of their communities, and as the unique and varied individuals they are.”
Therese Coffey, New DWP Minister’s Voting Record
With many thanks to Benefits And Work.
Therese Coffey, who today replaced Amber Rudd as secretary of state for work and pensions, voted to cut welfare benefits spending on 52 separate occasions between 2012 and 2016.
Amber Rudd resigned yesterday due to disagreements over Brexit with prime minister Boris Johnson.
Her predecessor, Esther McVey, also resigned due to disagreements with the then prime minister Theresa May over Brexit, in November 2019.
Coffey has been the MP for the Suffolk Coastal constituency since the 2010 election.
Her voting record is not one that will inspire confidence amongst claimants.
As well as voting to cut welfare benefits spending on 52 separate occasions between 2012 and 2016, Coffey:
- Consistently voted against paying higher benefits over longer periods for those unable to work due to illness or disability
- Consistently voted for the bedroom tax
- Consistently voted against raising welfare benefits at least in line with prices
- Consistently voted for mass surveillance of people’s communications and activities
- Generally voted against laws to promote equality and human rights
Coffey was one of 72 MPs who are also landlords who voted against an amendment that would have obliged all landlords to ensure that their properties were “fit for human habitation.
The only consolation claimants can draw from the current situation is that Coffey is unlikely to be in post long enough to have much influence over anything.
It seems extremely likely that there will be an election in the next few months
If the Conservatives are not re-elected then Coffey will clearly be gone.
But even if they do win another term, a major reshuffle following the election is likely, which Coffey may not survive, at least in her current post.
The full list of DWP secretaries of state since Iain Duncan Smith resigned in March 2016 is:
Stephen Crabb: 9 March 2016 to14 July 2016
Damian Green 14 July 2016 to11 June 2017
David Gauke 11 June 2017 to 8 January 2018
Esther McVey 8 January 2018 to15 November 2018
Amber Rudd 16 November 2018 to7 September 2019
The average lifespan in the post since March 2016 currently stands at less than 9 months.
You can read more about Coffey’s voting record on the They work For You website.
44% Of Disabled People Have To Go Without Food Says Citizens Advice
With many thanks to Benefits And Work.
New data shows that 44% of disabled households have gone without essentials such as food and toiletries because of the benefits freeze, introduced in 2016, Citizens Advice claimed yesterday.
According to the charity, things are even worse for universal credit claimants, with 55% having gone without essentials such as food and 51% saying they have lost sleep because of financial worries.
The data also shows that 27% of people claiming benefits say financial worries have made them feel lonely or isolated. Some 29% say financial worries have affected their mental health.
Citizens Advice is calling on the government to:
End the freeze on benefit rates.
Uprate payments by the Consumer Prices Index plus 2% for four years.
Recalculate the Local Housing Allowance to at least the 30th percentile of local rents and re-establish the link with rental prices.
Reduce the five-week wait by bringing forward the first non-repayable payment to no later than two weeks into a Universal Credit claim.
Alfie Bennett
A schoolboy’s piano performance at a railway station has won social media fans after a video of his playing was viewed more than 330,000 times.
Alfie Bennett entertained commuters at Birmingham New Street on a keyboard for public use.
His mother recorded the 12-year-old playing Queen’s Bohemian Rhapsody and uploaded it to Twitter where it won lots of praise.
She had intended to shoot the whole performance but gave up after she was repeatedly interrupted by the public asking her about her son and his performance.
Alfie, from Birmingham, has autism and his parents hope the social media spotlight will help raise awareness of the condition.
One-Off Injection Will Save Children From Inherited Blindness
NHS England is to pay for a cutting-edge genetic treatment that will save children with a rare inherited disorder from going blind.
A one-off injection will prevent babies born with poor sight because of an inherited retinal dystrophies disorder from losing their vision entirely, which usually happens during childhood.
The list price is high, at £613,410 per patient, but the NHS has done a deal with Novartis, the UK supplier of voretigene neparvovec, also known as Luxturna, and the numbers needing treatment are low. The company estimates that 86 people in England could benefit now, and about three to five babies with the genetic mutation are born every year.
“Loss of vision can have devastating effects, particularly for children and young people, but this truly life-changing treatment restores the sight of people with this rare and distressing condition,” said NHS chief executive, Simon Stevens, making the announcement at the Health Innovation Expo conference in Manchester.
“For previous generations, curing blindness would literally have been seen as a miracle. Now modern medicine is making that a reality for our patients. Once again the NHS is at the forefront of the genomic revolution with patients in England among the first to benefit from this revolutionary new form of treatment.
“This latest deal reinforces the benefits for companies willing to engage with us and be pragmatic with their pricing – which is good news for patients, taxpayers and industry.”
The National Institute for Healthcare Excellence (Nice) announced it had approved the treatment within 20 weeks instead of the average 38 weeks through its highly specialised technologies programme and with the cooperation of the company.
“This is a highly innovative treatment for a very distressing, inherited condition so we are pleased the company has worked with us and NHS England and NHS Improvement to allow us to offer these families hope for the future,” said Meindert Boysen, director of Nice’s Centre for Health Technology Evaluation.
The treatment is expected to become available in January at three specialist eye centres in the UK.
Stevens has pushed for NHS access to a number of innovative treatments, such as CAR-T therapy for blood cancers where other drugs have failed and the lung cancer drug pembrolizumab. The NHS can afford expensive new drugs for rarer conditions through tough deals and saving money on the more routine medicines, it says, and has cut the annual bill by £700m.
Sue Sharp, deputy chief executive at the Royal Society for Blind Children, said: “We see first hand the devastating effect of childhood sight loss, and so we welcome news of this breakthrough therapy and its impact on the lives of children with inherited retinal dystrophies disorder.”
Teenager Blind After Years Of ‘Fussy Eating’
Experts are warning about the risks of extreme fussy eating after a teenager developed permanent sight loss after living on a diet of chips and crisps.
Eye doctors in Bristol cared for the 17-year-old after his vision had deteriorated to the point of blindness.
Since leaving primary school, the teen had been eating only French fries, Pringles and white bread, as well as an occasional slice of ham or a sausage.
Tests revealed he had severe vitamin deficiencies and malnutrition damage.
Extreme picky eater
The adolescent, who cannot be named, had seen his GP at the age of 14 because he had been feeling tired and unwell. At that time he was diagnosed with vitamin B12 deficiency and put on supplements, but he did not stick with the treatment or improve his poor diet.
Three years later, he was taken to the Bristol Eye Hospital because of progressive sight loss, Annals of Internal Medicine journal reports.
Dr Denize Atan, who treated him at the hospital, said: “His diet was essentially a portion of chips from the local fish and chip shop every day. He also used to snack on crisps – Pringles – and sometimes slices of white bread and occasional slices of ham, and not really any fruit and vegetables.
“He explained this as an aversion to certain textures of food that he really could not tolerate, and so chips and crisps were really the only types of food that he wanted and felt that he could eat.”
Dr Atan and her colleagues rechecked the young man’s vitamin levels and found he was low in B12 as well as some other important vitamins and minerals – copper, selenium and vitamin D.
Shocking findings
He was not over or underweight, but was severely malnourished from his eating disorder – avoidant-restrictive food intake disorder.
“He had lost minerals from his bone, which was really quite shocking for a boy of his age.”
He was put on vitamin supplements and referred to a dietitian and a specialist mental health team.
In terms of his sight loss, he met the criteria for being registered blind.
“He had blind spots right in the middle of his vision,” said Dr Atan. “That means he can’t drive and would find it really difficult to read, watch TV or discern faces.
“He can walk around on his own though because he has got peripheral vision.” Image copyright Getty Images
Nutritional optic neuropathy – the condition the young man has – is treatable if diagnosed early. Left too long, however, the nerve fibres in the optic nerve die and the damage becomes permanent.
Dr Atan said cases like this are thankfully uncommon, but that parents should be aware of the potential harm that can be caused by picky eating, and seek expert help.
For those who are concerned, she advised: “It’s best not to be anxious about picky eating, and instead calmly introduce one or two new foods with every meal.”
She said multivitamin tablets can supplement a diet, but are not a substitute for eating healthily.
“It’s much better to take on vitamins through a varied and balanced diet,” she said, adding that too much of certain vitamins, including vitamin A, can be toxic, “so you don’t want to overdo it”.
Dr Atan said vegans are also at increased risk of B12 deficiency-related sight problems if they do not replace what they can lack when excluding meat from their diet.
“Nutritional yeast is a way of adding B12 to your diet,” she said.
Sources of vitamin B12 for vegans include:
- breakfast cereals fortified with B12
- unsweetened soya drinks fortified with vitamin B12
- yeast extract, such as Marmite, which is fortified with vitamin B12
Rebecca McManamon, consultant dietitian and spokesperson for the British Dietetic Association, said restricted diets might happen for a range of reasons, including eating disorders, allergies and autism, and need specialist assessment.
“It’s also worth noting that since 2016 the UK government has recommended daily Vitamin D supplementation (10 microgrammes/400 International Units) for everyone between October and March as we are not likely to get enough from fortified foods.
“Multivitamin supplementation is recommended for all children up to their fifth birthday.”
Autistic Woman Told She Was The Wrong Sex To Have Condition
Jasmine Ghibli was diagnosed with autism at two years old in America. The diagnosis was taken away from her when she moved to Scotland after her GP decided she was the “wrong sex” to be autistic.
Now at 18, Jasmine has her diagnosis but not without enduring years of frustration at a system that she thinks appeared to forget the female face of autism.
Nicole Bonner, Jasmine’s mother, said their GP told them that, “autism isn’t for girls – she’s just a bad kid.”
After moving to Scotland from America, the children’s hospital informed Nicole that Jasmine wasn’t autistic, and that her original diagnosis was unrecognised.
Speaking to BBC Scotland’s The Nine, Jasmine, from Helensburgh, said the confusion around her diagnosis caused her mental health to deteriorate.
She says the lack of support and bullying at school led her to attempt to kill herself three times – the first time was when she was just seven. Image caption Nicole Bonner says Jasmine felt “hopeless”
Jasmine’s mum doesn’t blame Jasmine for trying to end her life. “She felt hopeless – I felt hopeless,” she says.
Jasmine’s story is not uncommon. The National Autistic Society’s most recent study examining the ratio of diagnosis in men was higher than that in women. The official estimate is now 3:1.
‘Being a brat’
There are multiple theories speculating as to why more men and boys get an autism diagnosis. Some reports say that girls are better at camouflaging or “masking” their autism by using mimicking techniques. Jasmine masks her behaviours by copying the people around her.
“It’s like putting on a horrendous amount of face paint, and at the end of every day, you have to wipe all of that face paint off,” she says. “I’m constantly exhausted.”
Jasmine believed she couldn’t appear as autistic because she wouldn’t get the same treatment as if she was male – “There would be no understanding if I had a meltdown. It would just be perceived as me being a brat.” Image caption Jasmine felt isolated due to the lack of support and understanding
She says she was forced to find her own sources of support. She now works closely with the Scottish Women’s Autism Network (Swan) as an advocate for autistic women.
“Swan saved her life,” Nicole says. “Jasmine would not be here without the support of those kind and understanding women.”
Jasmine has also spoken at an autism cross-party group at the Scottish Parliament to share her experiences, and hopes to be an advocate for more awareness in the area.
“I can’t express how important it is to empower autistic women and girls,” she says. “One of the main reasons I want to raise awareness is that it’s so easy to feel lonely and ostracised as an autistic person, but particularly as an autistic woman.
“We are completely underrepresented.” Image caption Both Jasmine and her mum are now hopeful for the future
Despite leaving school at 16 with little to no qualifications, Jasmine is going to the University of Glasgow in September to study English Literature, Language, and Linguistics.
“I always knew Jasmine was going to do great things,” Nicole says. “That’s just what she does – she changes people. She already has.”
“People just need to be tolerant, and show a wee bit of love. All she’s ever wanted was friendship and kindness.”
Clarks Store Thanked For Care Of Autistic Boy
A family has thanked Clarks shoes for the care staff showed their autistic son while out shopping.
Katie Nolan said son Jayden, nine, struggles with shopping, as sounds and people cause a sensory overload.
She said staff at the shop in Stafford noticed her sunflower lanyard, signalling his hidden disability, and took them to a private room where Jayden’s feet could be measured.
Clarks said it was pleased to hear about Katie and Jayden’s experience.
Mrs Nolan, 31, said the help Clarks staff showed made their experience “much easier”.
Along with husband Liam, 30, they had taken Jayden and their other two children Tommy, six, and Lucia, three, to buy back-to-school supplies.
It was her first time wearing the lanyard, which was launched in airports to let others know that the wearer may have a hidden disability.
“Jayden had already started getting over-sensitised, he was making a lot of noise,” Mrs Nolan said.
“They asked if we would like to go upstairs to the staff room where it was nice and quiet.” Image copyright Liam Nolan Image caption Lucia, Jayden and Tommy Nolan were all on the shopping trip
There, Mrs Nolan said, the staff gave Jayden a sensory story which explained what was going to happen, something he is familiar with from school.
She said the assistant was then able to measure his feet, put new shoes on and get him to walk around.
“He was still very anxious and very noisy…he doesn’t like strange places,” she said.
“But normally, when we go back-to-school shopping, Jayden is screaming and crying and we all end up leaving upset and teary, they made it so easy. “
“Clarks recognises and celebrates individuality and we are proud to see our company values being so well expressed by store colleagues,” a spokesman said.
Alison Lapper Says Late Son Parys Was Bullied Over Her Disability
The artist Alison Lapper has said her late son was taunted by other children at school because of her disability.
Parys Lapper, 19, was found in a hotel in Worthing, West Sussex, last month after he died from a suspected accidental drug overdose.
Lapper, who was eight months pregnant with her son when she posed for Marc Quinn’s celebrated Trafalgar Square statue, said he had suffered with depression and anxiety after being bullied at school.
“I could see how anxious he was,” said Lapper, who told the Sunday Times that Parys had asked her to stop attending parents’ evenings when he was 13.
She added that when they arrived at the school “we were the show. The next day Parys would go in and they would rip pieces out of him.”
Lapper was born with the condition phocomelia, meaning she has no arms and shortened legs. Eventually, Parys was moved to a smaller unit by his school because of his struggle to cope with the taunting, but dropped out.
During this period, said Lapper, he spent more time online, which furthered his declining mental health. “Parys didn’t like his body,” she said. “I thought I could teach him to, but it’s a social media nightmare, isn’t it? There’s always someone with a six-pack or bigger.”
She added that the irony of her son’s concerns about his image was not lost on her. “Look at me, for God’s sake,” she said, “and I really love my body. I’m not ashamed about it at all.”
Lapper said that despite her efforts to help him, Parys had become more introverted and had begun taking drugs.
After his behaviour deteriorated, she was forced to have him taken into care at 16 but kept in regular contact with him. “He was out of control and I couldn’t help,” she said, adding that his problems had been a “vicious circle”.
“His mental health would get worse so he’d take drugs and the drugs would then make his mental health worse.”
She added: “I don’t want my son to be remembered as a junkie, as just another drugs death. The drugs were a consequence of what he had been through.”
Parys was one of 25 subjects of the BBC television series Child of Our Time, which documented the lives of a diverse group of children born at the turn of the millennium.
His funeral was at Worthing crematorium on Thursday.
‘How A Blue Badge Will Help With My Hidden Disability’
“The amount of times I’ve gone to Asda and not been able to find a space straight away and had to leave – it’s too stressful.”
Connor Ward has autism and says having a blue badge will makes things like shopping easier.
“Instead of putting myself through having to squeeze into tight spaces, I just don’t do it.”
He’s one of the people who has a hidden disability who can now apply for a blue badge in England.
The permit helps people access shops and services, by allowing them to park close to their destination.
‘People say ‘why are you parked in the disabled place?’
The 21-year-old from Nottingham says he will definitely be applying for a blue badge but says he is worried he’ll face questions from some people because he doesn’t have a physical disability.
Connor says his mum has a blue badge for her disability and when they’ve been shopping, he’s faced questions. Image copyright Getty Images Image caption People with hidden disabilities, such as anxiety can apply for a blue badge parking permit in England
“People say ‘you shouldn’t be there’ or ‘why are you parked in the disabled place?’
“The judgment is from the wider disabled community as opposed to the general public,” Connor adds.
Connor feels in order for attitudes to change, things need to change.
“It would be nice to see a blue badge symbol that isn’t a person in a wheelchair.
“Lots of disabled loos are changing to show invisible disabilities as well, but ultimately if you’re going to allow more people to have blue badges you will need more parking spaces.”
‘My blue badge application was rejected’
Elizabeth Pennifold, 20, has Crohn’s Disease and recently applied for a blue badge to make things like going to the shops or having a day out easier.
“When I am tired, I feel like I am going to fall over so if I am parking close to where I am going, the likelihood of that is probably a bit less. Image copyright The Markus Reeves Brotherhood Image caption Elizabeth Pennifold says there needs to be more awareness around hidden disabilities
“With my Crohn’s, if I get an urge I need the toilet my fatigue will come on straight away. I get hot and sweaty and it hits you all at once,” she adds.
She applied for a permit about a month ago and says her application was rejected.
“When I applied for the blue badge I was already worried and conscious and felt a bit bad for doing it.”
Elizabeth says she will now reapply but feels when it comes to hidden disabilities, a lot of people don’t know what it is.
“I look like a young fit girl, you wouldn’t look at me and think there’s anything wrong with me at all.”
People with conditions such as autism or anxiety disorders can apply for the badge – although eligibility will be decided by local councils in England.
Scotland and Wales already have similar rules to include some mental health issues, but the criteria are yet to be altered in Northern Ireland.
The government said it would provide an extra £1.7m to help councils cope with the expected increase in applications.
The charity, Crohn’s & Colitis UK says it welcomes the changes but has some concerns.
In a statement it said: “Even under the new criteria, unless someone has very considerable pain whilst walking, experience severe or overwhelming anxiety whilst walking or that the act of walking from a car to a destination, could cause serious harm to themselves or others, it will still remain difficult for people living with Crohn’s or Colitis to successfully apply for a Blue Badge.”
Tackling CMV
Babies in the east of England are being screened for a virus which can cause development defects, including deafness.
Carriers of Cytomegalovirus (CMV) often have no symptoms but it can be passed from mother to baby during pregnancy and affects about 1,000 newborns in the UK each year.
A 100-strong team of NHS staff led by a Cambridge paediatrician have volunteered their time to test babies for the virus if they show signs of deafness.
Naomi Parker, 8, struggles to balance because of deafness, having contracted CMV from her mother Stevie Parker.
Ms Parker said: “I wish I knew about CMV. I would have been a little bit more vigilant.”
James Oliver
A man whose terminally ill brother was refused disability benefits has accused the Department for Work and Pensions of being “shambolic and incompetent”.
James Oliver, 49, could “barely walk” and was incontinent due to liver disease before he died on 9 April, his brother David Smith said.
But the DWP denied Mr Oliver Personal Independence Payments (PIP) after he scored zero points in an assessment.
The DWP said its procedures were followed correctly.
Several months after Mr Oliver’s death in Hastings, one of his children found a letter inviting him to an appeal hearing about the decision.
Mr Smith said he had told the department his brother was dead and described the letter as “insulting”.
The DWP said it was “very sorry for the distress caused” by the letter and it was “looking into this to prevent it happening again”. Image copyright David Smith
Mr Oliver had suffered chronic liver disease caused by alcohol dependency for several years, but his health took “a nosedive” in 2016 when his other organs became affected, his brother told the BBC.
“That left him barely able to walk,” Mr Smith said, adding that it would take Mr Oliver two to three hours to walk 500m to the nearest supermarket.
“He had to stop every few metres for breath because he was gasping,” he said.
“He had no control over his toilet habits and was so embarrassed. He’d go out and soil himself.”
Mr Oliver applied for PIP – the benefit that is replacing Disability Living Allowance – in March 2018.
How does PIP work?
PIP is made up of two parts: the daily living component and the mobility component, according to the charity network Citizens Advice.
Each part can be paid at one of two rates, either the standard rate or the enhanced rate.
During a PIP assessment, a health professional will give a claimant a score between zero and 12 on a range of activities.
The rate you receive depends on the number of points you score – a higher number puts you on an higher rate.
The assessments are done on DWP’s behalf by the private companies Capita and the Independent Assessment Services (formerly called Atos), which have come under criticism for scoring claimants too harshly.
Mr Oliver was assessed by a paramedic, who “gave him zero points on everything”, which meant he did not receive the disability benefit, his brother said.
He applied for a review of the decision – called a mandatory reconsideration – but it was upheld in June 2018.
Doctors gave Mr Oliver 12 months to live last summer, according to Mr Smith, although the DWP said it only had a record of the diagnosis from March this year.
Currently, a terminally ill person only qualifies for fast-tracked access to benefits when their death is expected within six months.
But the government is reviewing the rule after the All-Party Parliamentary Group for Terminal Illness said it was “outdated, arbitrary and not based on clinical reality”.
Without the benefits payment, Mr Oliver was not able to heat his home and he resorted to using a hot water bottle during the day to keep warm, Mr Smith said.
He said his brother “gave up” after his mandatory reconsideration was rejected and turned to alcohol.
“He just downed more or less anything he could lay his hands on at that point and it was the beginning of the end. We couldn’t bring him back from that,” Mr Smith said.
After collapsing on the way to the supermarket, Mr Oliver was taken to the hospital, where he was told he would soon die.
According to Mr Smith, his brother said: “I can’t believe it I’m going to die and I’m still not sick enough to qualify for PIP.”
March 2018 – Mr Oliver makes a PIP claim
May 2018 – His claim is denied
June 2018 – His mandatory reconsideration is disallowed
July 2018 – He appeals the decision
April 2019 – Mr Oliver dies
August 2019 – The DWP invites Mr Oliver to an appeal hearing in September
A Facebook post about Mr Oliver’s death had been shared 107,000 times by Friday afternoon.
Since writing the posts, Mr Smith says he has been “bombarded” by similar stories to his brother’s.
A DWP spokesperson said: “Our thoughts are with Mr Oliver’s family at this difficult time.”
People With Sight Loss ‘Avoiding Rail Journeys’
One in five people with sight loss have missed or avoided a rail journey due to access issues, according to a report.
A lack of support in stations made visually impaired people uncomfortable travelling, charity Guide Dogs said.
Music producer Justin Cunningham, 25, who uses a guide dog, said he had to “jump through hoops” just to get on a train.
Department for Transport (DfT) said it was “working closely with operators” to run an inclusive service.
Some train companies on National Rail services often require 24-hour notice to guarantee assistance for people with disabilities.
“More often than not we’re reliant on assistance, but staff need to be trained better,” Mr Cunningham said.
“Some times you have to ask members of the public, who are normally helpful but not always.”
A survey of 2,000 blind and partially-sighted people found 19% had missed important meetings and 13% had been late to see friends and family.
One in 10 also said they had been left stranded on a platform after missing a train, a figure that rose to more than one in three in London.
Clive Wood, engagement officer at Guide Dogs, said rail was “undoubtedly one of the most complex methods of travel for someone with sight loss”.
But improving training for staff at stations and increasing awareness “would make a huge difference”, he added.
A DfT spokesman said: “We are acutely aware of the difficulties faced by disabled passengers using our railways.
“Since we launched our Inclusive Transport Strategy last year, we have delivered against a number of the commitments including delivery of more than 200 accessible routes into stations.”
People With MH Can Now Access Blue Badges
A positive change to the Blue Badge scheme will come into play on Friday 30 August, when people with hidden disabilities such as anxiety and even Crohn’s Disease will be able to apply for the support.
It comes after the Department for Transport unveiled plans to extend its Blue Badge Scheme earlier this year to cover those with invisible illnesses, including mental health problems, such as depression and those in “severe psychological distress”.
Around 2.35 million people in the UK currently have blue badge permits because they have physical mobility difficulties or are registered, to an extent, blind.
These permits help them access goods and services, by allowing them to park closer to their destination.
Under the changes, more people with invisible disabilities will be able to benefit from this, making everyday tasks easier and reducing loneliness and isolation.
However critics say councils are ill-prepared for the new rules that will put potentially millions more drivers in priority need spaces.
Confused.com figures show there are 30 Blue Badge holders for every one council-owned parking space right now – a problem that will worsen with more badge holders on the road.
The comparison website is also calling for tougher punishments for those who break the law when using the parking permits.
Dedicated Blue Badge parking spaces are available for badge holders, as they’re often located closer to entrances or offer more room to get in and out of the car.
However, figures show that many drivers are abusing this luxury. Last year, more than 156,821 parking charge notice (PCN) were issued to drivers for wrongly parking in a Blue Badge parking space – a 15% increase compared to 2016 (136,940).
Amanda Stretton, motoring editor at Confused.com, said: “Clearly more parking for Blue Badge holders is needed – 30 drivers to one space is quite a challenge. It’s no wonder some of these drivers have had to park elsewhere. And the number of people competing for spaces is only going to grow as more people can apply for a Blue Badge now.
“Drivers who misuse these spaces are making the problem even worse. They should be more respectful and leave them free for those who need them.
Ceri Smith, at disability equality charity Scope, said unless the Government takes action on car parks, the extension of the scheme will be worthless.
“With spaces already scarce, it’s extremely worrying that so few councils have prepared for the expansion of the Blue Badge scheme, despite knowing it was coming for months.
“Many disabled people, including those with invisible impairments, need to be able to park close to shops and amenities.
“Without enough dedicated parking spaces, Blue Badges aren’t worth the paper they’re printed on.
“Councils need to up their game to ensure Blue Badge holders can actually use them.”
Two original oil landscapes painted for a woman paralysed by multiple sclerosis are feared to have been stolen.
Having completed the two pieces of work, 79-year-old artist David March had just bought frames from the Ikea store in Cardiff.
However by the time he realised he had left the canvasses in a shopping trolley and returned, they had gone.
“You put your heart and soul into paintings, so to lose them like that was very upsetting,” he said.
The landscapes – of Carreg Cennen castle, Carmarthenshire, and Pen y Fan – were painted over a series of weeks and each measure 30in x 20in (76cm x 50cm).
“Losing them was a double-whammy,” said Mr March, of St Athan, Vale of Glamorgan.
“Not only was it the time and effort, but they were meant to be a surprise gift for a good friend who has been paralysed from MS and who loves those landscapes.
“I was actually very pleased with them and wanted to see which style frame worked best.
“But after loading the frames into my car, I distractedly left the rolled up canvasses in the trolley.
“I only realised my mistake once I got back home. I immediately returned to Ikea, but they had gone and no-one had handed them in.
“I haven’t a clue what’s happened to them. I only hope they are hanging up somewhere giving someone pleasure, though it would be lovely to get them back to give to our friend.”
Mr March’s family have taken to social media to plead for their return.
His daughter Sarah Rosser said: “They haven’t been handed in to Ikea or the police so we can only presume they’ve been stolen.”
Ikea said they had searched for the paintings but had been unable to find them and none had been found by the public.
Man Sets Legal Landmark As First Deaf Juror In English Court
A 54-year-old technology consultant from London is believed to have established a legal landmark this month by becoming the first profoundly deaf person to sit on a jury in a crown court in England and Wales.
Matthew Johnston served on three trials during a two-week period at Blackfriars crown court, concluding last Thursday. He read subtitles from courtroom stenographers and relied on his lip-reading skills to participate in jury deliberations. Johnston has a small amount of hearing as a result of his cochlear implant, and is able to speak.
“It’s all about inclusivity, isn’t it,” Johnston said. “It’s a big thing for me … We don’t want to turn our backs to society, we want to be part of society. We want to feel included. I feel great that I can be one of a jury.”
Deaf people have previously been denied the opportunity to serve on juries in the UK as many rely on sign language interpreters. English and Welsh law prohibits the presence in the jury deliberation room of anybody except the 12 sworn jurors, and an interpreter would be considered a disqualifying “13th stranger”.
After receiving a jury summons in January, and initially having a request for a stenographer refused for lack of finances, Johnston arranged a meeting with court officials to discuss how he could still fulfil his civic duty. Johnston assured them he did not require a sign language interpreter, and also noted that the round table in the jury deliberation room would allow him to lip-read his fellow jurors.
Johnston said deaf people are usually automatically precluded from selection, but insisted that was a mistake as effective methods of communication exist for many. He said: “They wanted to see me, how deaf I was, how well I could lip-read, and when they met me there was no problem.”
After being convinced of Johnston’s ability to serve without hindrance, and discussions with a judge, the officials secured financing for a two-person team of stenographers to transcribe everything spoken in court, which Johnston read on a tablet device from the jury benches.
He sat on separate trials for sexual assault, violent disorder and actual bodily harm. In two of the three cases, Johnston served as foreman of the jury – a measure that encouraged his fellow jurors to speak clearly and direct their words at him during deliberations. Johnston said he had requested that colleagues raise their hand before talking and refrain from speaking over one another, to ensure he could follow everything being said.
“I think it made the deliberations clearer, more structured,” Johnston said. “I was really pleased when somebody said: ‘Matthew, you’re going to be the foreman.’ I actually felt a little bit emotional when somebody said that. They had confidence in me.”
Deaf people have served on juries in Ireland, Australia and the US, but challenges to existing laws to permit the same in England and Wales have consistently failed. In 1999, the then chief executive of the British Deaf Association (BDA), Jeff McWhinney, lost a court battle to allow a sign language interpreter to accompany him. A judge ruled that a 13th person in jury deliberations would amount to an “incurable irregularity”.
There is no record of a profoundly deaf person having served on a British jury and the Ministry of Justice did not point to any previous examples when asked.
Johnston is not the first deaf person to seek to set a new precedent recently, however. In January, Pauline Latchem, from north London, was left “annoyed and irritated” when her request for a sign language interpreter to help her attend jury service at Wood Green crown court was rejected, with the jury summons board stating “jurors are not allowed to have interpreters” and that it “may well impact on my ability to carry out my jury service”. Advertisement
A deaf woman from Essex recently said she had appealed against her disqualification to a judge, who ruled that she should be allowed to appear on a jury and provided with an interpreter in court and a speech-to-text converter in the jury room. She has yet to receive a court date.
A Ministry of Justice spokesman did not comment specifically on Johnston’s circumstances but said: “Every effort is made to make sure people with hearing difficulties can serve on juries, and we are harnessing technology like hearing loops and computer-aided transcription services to improve accessibility even further.”
The MoJ says it is examining developments in potential new technology, including voice recognition software or simultaneous transcripts, that could provide technical assistance to those who are profoundly deaf.
Anthony Jarvis, who was on the same jury panel at Blackfriars as Johnston, said: “The processes in court seemed like they were in no way negatively impacted by having a deaf juror and that the court handled it very well. The trial carried on as if having a deaf juror was standard procedure. It didn’t feel like this was the first time.”
Johnston himself said that apart from a couple of small teething issues – his tablet ran out of battery charge at one point, and he also could not hear the announcements in the jury assembly area calling him to court – his time was entirely fulfilling.
“It worked. It can be done,” he said. “It means that more people with hearing impairments can go on a jury. You’ve got a bigger pool to select.”
His ultimate aim is that closed captioning is introduced to courts as a matter of course, and not only if someone on the jury self-reports as deaf. Eleven million people are hard of hearing in the UK, and Johnston said the option of reading subtitles could also help people for whom English is not their first language.
He said that Blackfriars crown court had already sought his feedback with a view to increasing its accessibility, but he also recognised that some new technology aimed at producing automated and near-instant transcriptions from spoken word was potentially still too unrefined. “If it changes the dynamic of a deliberation, I don’t know if it’s a good thing,” he said.
A severely visually-impaired student fears he will fail his final year at university because of “discrimination”.
Gary Copland says the University of Glasgow failed to provide him with accessible books, and then marked him down for citing too few materials.
He said he was made to feel like he was taking up too many resources and was offered little exam support.
The university acknowledged some shortcomings but said it was committed to “equality of opportunity”.
Mr Copland, 27, told the BBC’s Victoria Derbyshire programme his experience of studying law at the university had been “characterised by multiple barriers, failings, misunderstandings, stress, anxiety and a sense that there is no way forward to resolve the numerous issues”.
He said there had been “repeated failures” and “huge delays” in making course texts accessible to him in all four academic years.
In his first year, he said, he was provided with just one out of 600 texts in a digitised format – causing him to have to retake two exams.
And he said even in his current fourth academic year he had received accessible versions of only 3% of course materials.
‘Allowances made’
Mr Copland, who also has autism, told the BBC he had also been put at a disadvantage during exams.
He said tests were halted because of technical issues, exams lasting up to five hours had no screen breaks and in one instance an agreed support worker was barred from the exam room because the invigilator had not been informed.
And he said his request for such experiences to be taken into consideration and his grades moderated was refused by the university.
In letters seen by the BBC, the university accepted Mr Copland did not receive all the reading material he needed during the first three years of his course – and not all of that which was provided arrived in time.
But it said allowances had been made and extra time allowed during examinations to take into account his needs.
Mr Copland and his family made 19 formal complaints about his concerns between 2016 and 2019.
Both the university and the Scottish Public Services Ombudsman (SCPO) upheld a complaint in April 2019 relating to insufficient reading material being made available.
The SCPO is still investigating other complaints made during that time.
Mr Copland’s family said seven complaints to the university – including failings with IT systems, exam results being downgraded and an accusation of victimisation – were not upheld.
They said five were partially upheld, while the others were rejected – resulting in no action being taken – or were still outstanding, although the university says all but one complaint has been dealt with. Image copyright AGF Image caption The University of Glasgow said its Disability Service provides dedicated support for students with disabilities and impairments
The University of Glasgow said in a statement it always seeked to address the needs of individual students and to offer appropriate support, but in some complex cases “this can take some time to get right”.
It added: “In this instance, huge efforts have been made by both academic and professional support colleagues (aided by expert external advice) to ensure that the student can progress his studies effectively.
“We are pleased that he is progressing well at an academic level. Preparations for his next year of study have been under way for some time and we are confident that we will be able to continue to support him effectively through to the completion of his studies.”
But Mr Copland said that “little, if anything, has changed” since he first reported issues to the university.
He has now been diagnosed with depression, and said he had “numerous doubts about my ability to complete my studies”.
He added: “I do not know what I will do or what will happen if this does not get resolved.”
Daisy-May Demetre
A nine-year-old girl who had both legs amputated as a baby is set to walk the runway at New York Fashion Week.
Daisy-May Demetre, from Birmingham, was chosen to appear for Lulu et Gigi Couture, after its founder saw her modelling in London.
Eni Hegedűs-Buiron said she would be the first double amputee child to walk in an official NYFW show.
Daisy’s father, Alex Demetre, said she wanted to lead the way for other amputees.
Daisy was born with fibular hemimelia which led to her legs being amputated.
Mr Demetre said she had now worked for Nike, Boden and Matalan, and was named Child of Courage in the Pride of Birmingham awards.
Daisy, who will be walking on 8 September, previously represented Lulu et Gigi at London Kids’ Fashion Week.
Ms Buiron said: “I was asked if I was OK with having an amputee walk in my show. To be honest I was surprised by the question. For me, a child is a child and thus is beautiful and perfect.
“So of course I said yes.”
Daisy’s 11-year-old sister, Ella, will also be part of the show.
Mr Demetre said: “[Daisy is] going to be making a little bit of history. It is a good thing she is first to do it, but going forward we want child amputees all the time.
“It doesn’t stop you; it definitely doesn’t stop Daisy. She is fitter than most grown men I know.
“But the modelling doesn’t define Daisy, it is just a part of what does… she just does Daisy, it is the way she goes about life with a smile on her face.”
Love Island’s Theo Campbell Loses Sight In Eye
Love Island star Theo Campbell says he has lost sight in his right eye after he was hit by a champagne cork.
Campbell, who appeared on the 2017 series of the ITV2 show, was on holiday in Ibiza when the accident happened.
He was taken to hospital and subsequently underwent surgery.
In an Instagram post, he wrote: “Two eye surgeries later after a really unfortunate accident, I’ve lost all vision in my right eye as it got split in half.”
“Who would have thought a champagne cork would be the end of me? But I still have one eye left, looking at the bright side of things.” Image copyright Getty Images Image caption Campbell and Crossley attended the London premiere of The Lion King last month
He also posted a picture of himself in hospital with girlfriend Kaz Crossley – who appeared on a different series of Love Island.
An eyewitness told OK!: “Theo was on holiday in Ibiza enjoying himself when someone popped a bottle of champagne and the cork flew into his eye.
“People were screaming when they realised what happened and saw the state of his eye. One of the guys said it looked like his eye had exploded.”
Disabled Artist Alison Lapper’s Son Parys Lapper Dies Aged 19
The son of a disabled artist who posed for a famous Trafalgar Square sculpture while pregnant with him has died aged 19.
Parys Lapper died suddenly last week, his family said.
His mother Alison Lapper, who was born with shortened legs and no arms, posed nude for the artwork mounted on the square’s fourth plinth in 2005.
Her fiance has appealed to bikers to escort Parys on his final journey to Worthing Crematorium on Thursday.
On Facebook Si Clift said Parys was a “mischievous, generous, kind, loving, frustrating, cheeky, forgiving, beautiful boy”.
He was “his own man” and “a good son”, Mr Clift said. Image copyright Getty Images Image caption The marble sculpture of Alison Lapper by Marc Quinn stood in Trafalgar Square between 2005 and 2007
Mr Clift said he and Ms Lapper had been “blown away” by people’s kindness, humbled by their kind sentiments, and overwhelmed by messages of support.
He added: “Please take away from this a realisation that you are not alone, that you can talk and not to hold things within.
“Whatever it is, there is help.”
Ms Lapper “would absolutely love to see as many noisy motorbikes as possible to escort Parys on his final journey”, he said.
Open house
They will accompany him from her home in Shoreham-by-Sea, West Sussex.
The family is also holding an open house on Tuesday evening for his friends to decorate, paint, stick messages or sign their names on his empty coffin.
Ms Lapper co-hosted the 2016 BBC Four show No Body’s Perfect with fashion photographer Rankin, exploring how digital photography, social media and selfie culture had affected people’s sense of identity.
Parys also made appearances on screen as one of the stars on the BBC series Child Of Our Time, which tracks millennial babies from their infancy into their young adult lives.
Does The Fashion Industry Cater For Disabled People?
Last year Chloe Ball-Hopkins made a jumpsuit with the clothing shop ASOS.
It was designed with wheelchair users in mind, but anyone could wear it.
It’s an example of accessible fashion and 12 months on from the launch of her jumpsuit, Chloe has been to find out if other brands have followed suit.
You can listen to Chloe’s story on the BBC Sound podcast, The Next Episode.
Normal Pressure Hydrocephalus
When John Searle started to fall down and lose his memory, he thought it was the early signs of dementia. But it turns out he has a rare – and often undiagnosed – condition called normal pressure hydrocephalus. The good news is it’s treatable.
A few years ago, John Searle thought his life as he knew it was over.
His body had slowly stopped working. He had trouble walking, he was falling down, he had bad short-term memory and, at 69, he was incontinent.
It was a pattern of decline the retired Canadian engineer from Brantford, Ontario was all too familiar with. His own sister had died of Alzheimer’s in her 50s. His father had died of dementia in his early 80s. So he began to start planning for a future he would not be able to participate in.
“You kind of wonder where you’re going. You start thinking, is this it?” he says.
Doctors could not give him a definitive diagnosis, which only infuriated the retired engineer more. Parkinson’s treatment had no effect, he didn’t have Alzheimer’s but something was clearly not right. By 2018, he needed a wheelchair to go outside, and a walking frame inside his own home.
“There was no hope, I was sitting in the window watching life go by.”
“He was angry – he was beyond angry,” his wife Barbara chimes in. “There were nights when I was laying in bed thinking maybe I’ll have to sell the house… because I had to do everything.”
But that changed when he met Dr Alfonso Fasano, a neurologist at the Movement Disorders Clinic at Toronto Western Hospital, who diagnosed him with a condition called normal pressure hydrocephalus, or NPH.
The disorder is caused when excess cerebrospinal fluid accumulates in the brain’s ventricles, which are the communication centre of the mind.
This build-up of fluid can cause movement difficulties, memory and cognition problems and incontinence – symptoms that are also often associated with more common degenerative illnesses, like Alzheimer’s, Parkinson’s or dementia.
Hydrocephalus Canada estimates that at least 1 in 200 Canadians over the age of 55, or more than 57,000 people, have NPH. In the US, the Hydrocephalus Association estimates that 700,000 Americans are afflicted, but that only about 20% of people living with the condition been correctly diagnosed.
“NPH is a condition that is not well understood yet,” says Dr Fasano. Untreated, people may wind up in a nursing home, or die from complications. “That’s what we don’t want to see, people just dismissed,” he says.
Mr Searle first heard about NPH when he saw a specialist to treat migraine headaches in 2003. An MRI revealed some fluid in his brain’s ventricles, but because he had none of the telltale symptoms, he was not diagnosed.
In 2014, after several years of experiencing symptoms like memory loss and mobility difficulty, doctors did a lumbar puncture to drain some fluid from his brain to see if his symptoms improved, a common test for NPH.
Because Mr Searle’s symptoms did not improve, his doctors determined NPH must not be the culprit.
Eight years after 2010, when he first noticed the mobility issues and with his health rapidly deteriorating, he met Dr Fasano and agreed to try the test again.
This time, his wife Barbara noticed small improvements – so small that even her husband did not notice them.
“He wouldn’t believe it,” she said. “It was almost like ‘if I believe it and they’re wrong, it will be too big a disappointment.'” Image copyright University Health Network Image caption Dr Alfonso Fasano says while most patients diagnosed with dementia were diagnosed correctly, a small percentage may have NPH
Dr Fasano suggested they insert a shunt into his brain to drain the fluid, the front-line treatment for NPH, with a high success rate according to recent studies.
Shunt surgery can have serious complications and is not recommended for everyone with the condition.
More than a year later, and Mr Searle says he is beginning to get his life back. His gait has improved as well as his memory. He regularly works out with a personal trainer at the gym and goes on walks to help build his strength back up.
“The operation is only 50% of it, the rest is your mindset,” he says.
Although he still does not have his drivers licence, Mr Searle and his wife have started to travel again. They went to Florida last winter, and they’re planning trips to Las Vegas and Jamaica.
Barbara says the biggest change is her husband’s mood:
“The apathy that plagued him is gone. He’s his cheery self again.”
Dr Fasano says since Mr Searle’s story was shared with the media, the clinic has been overwhelmed with requests from patients who believe they have been misdiagnosed and have NPH.
Although misdiagnosis of NPH is a very real problem, Dr Fasano warns that most people who have been diagnosed with Parkinson’s or Alzheimer’s have the correct diagnosis – especially if they’ve been seen by a neurologist.
Up to 3% of the population over the age of 65 may have NPH, according to a recent study from Japan. The World Health Organisation estimates dementia, including Alzheimer’s, affects between 5-8% of the population over 60.
“This is a disease that is probably more common than we think it is, and this is a disease that can be treated very well, with a huge dramatic change of quality of life for these people,” says the doctor.
“At the same time, people are now believing that if they have Parkinson’s, they were misdiagnosed.
“They all hope the doctor was wrong.”
A care home run by the same provider as a specialist hospital at the centre of abuse allegations has been put into special measures.
Chesterholme, in Northumberland, is run by Cygnet Healthcare, as was Whorlton Hall, where BBC footage appeared to show patients mocked and intimidated.
Chesterholme, in Hexham, has been rated inadequate by Care Quality Commission (CQC) inspectors who visited in May.
Cygnet said significant steps had been taken to address Chesterholme’s issues.
The inspection at Chesterholme, which cares for people with a learning disability or autism, followed concerns about the provider’s safety and culture raised in the BBC Panorama programme on Whorlton Hall earlier this year.
It found staff turnover was 45% and there were high numbers of unqualified and untrained staff employed to support people with complex needs.
Staff were “unable to communicate a shared vision for the service and were unsure which policies or governance structures were relevant”.
‘Recently acquired’
Risk assessments were not consistently updated, and medication for use in emergencies following rapid tranquilisation were not kept on site.
However, inspectors also reported that the environment was clean and well maintained and staff interactions with people were mostly positive. Image caption Cygnet Healthcare also ran Whorlton Hall hospital
The CQC said it would keep the service under close review and make a return inspection in due course.
Cygnet Healthcare said it had “recently acquired” the home and was “investing significant resources to further enhance the infrastructure and management capability across the group’s facilities”.
It added: “We remain committed to acting upon the report’s recommendations and working closely with the CQC to ensure we provide the highest standard and quality of care.”
Whorlton Hall hospital was closed following the alleged abuse revealed in the Panorama programme, with patients transferred elsewhere.
At the time Cygnet said it was “shocked and deeply saddened” and would co-operate with the police inquiry. In June three nurses filmed there were suspended from practice.
The CQC, which did not publish a report in 2015 that criticised aspects of care at Whorlton Hall, denied having been aware of abuse there. Drafts of the 2015 report were published following the Panorama programme.
Sophie Christiansen Stuck On SWR Train
Plastic Bottles Turned Into ‘Cheap’ Prosthetics
Plastic bottles have been turned into the sockets for prosthetic limbs by university experts.
The engineer behind the technique hopes it could reduce the cost of the sockets, which join artificial limbs to the body, from £5,000 to £10.
De Montfort University engineers ground plastic bottles down to makes polyester yarns, which were heated and moulded to create the sockets.
The sockets were tested at a rehabilitation charity in India.
The average cost of producing a socket is £5,000, but the university believes using recycled material could reduce the cost to as little as £10 and help tackle plastic pollution.
Dr Karthikeyan Kandan said two amputees who tried out the products in Jaipur were “really impressed”.
He said: “The aim of this project was to identify cheaper materials that we could use to help these people.”
The yarns made from the ground-down bottles are heated to form a solid, lightweight material which is moulded into prosthetic sockets. Image copyright De Montfort University Image caption The technique was used to produce prosthetic limb sockets for two amputees in India
The prosthetic sockets have to be tailor-made for each user.
Two were made in Leicester and taken to India to trial on two patients from Bhagwan Mahaveer Viklang Sahayata Samiti – an organisation which helps rehabilitate disabled people.
“Both patients were really impressed,” Dr Kandan said.
“Upcycling of recycled plastics and offering affordable prosthesis are two major global issues that we need to tackle.”
Time For A Social Care Emergency Says Anonymous Social Worker
It’s hard to go a day without the climate crisis hitting the headlines. In May, MPs endorsed a motion to declare a climate and environment emergency. It’s a positive step for the country to take an active role in finding a solution to these problems. But another issue has been missed off the agenda: social care.
We see protesters on TV holding placards with messages such as “stand up for animals” or “planet before profits”. But what about “people before profits” or “stand up for vulnerable humans”? These ideals do not need to conflict with one another but instead should stand side by side. Creating a sustainable future would also benefit individuals’ and communities’ health and resilience. With a new prime minister and hunger in the air for social justice, let’s take this opportunity to make a real difference.
Almost four years ago, I started my career as a qualified social worker. In that time, I have seen an ever-increasing uphill battle for social care services to meet the needs of vulnerable people.
Since I started my current role a year ago, three homes in the area have closed. Those care homes that are still open might have restrictions stopping people from being placed there by the local authority, or limited spaces.
Stories like this across the country paint a very bleak view. I want good quality placements for the adults I work with, as do their families and friends, but the demand for places outweighs the number of beds available.
It’s not just a question of bed availability, but also a placement’s ability to meet often complex care needs. This can result in homes “cherry-picking” the type of adult they want to care for, which can lead to people being without the support they require for a longer period as the local authority has to widen its search to find a suitable home and once found, the council may have to pay higher fees. Advertisement
My colleagues and I feel under pressure by the authorities we work for to practise in a cost-saving way, which can be at odds with key messages from the Care Act 2014, such as promoting wellbeing, giving choice and control over services people receive, and preventing, reducing and delaying the need for more support in the future. I have been asked as part of my performance measures to demonstrate saving money – rather than show how I have achieved positive outcomes for people – which is something I deeply object to.
The NHS makes headlines all the time, but there is less focus on social care, which is chronically underfunded. During the EU referendum campaign, Boris Johnson was one of the politicians promising £350m a week for the NHS on our exit from the European Union.
After becoming prime minister, Johnson announced: “We will fix the crisis in social care once and for all with a clear plan we have prepared to give every older person the dignity and security they deserve.” Let’s ensure he and the government know we are watching intently and will hold them to account.
The health service was founded on the principle of universal healthcare free at the point of use. It assesses a person’s clinical need, not their ability to pay, and people using social care should be treated in the same way.
The time has come to declare a social care emergency. If people are prepared to take radical steps to protect our planet, why not for the most vulnerable in society, who often do not have a voice? As citizens we need to ask ourselves what standard of care we are prepared to accept. Will people pay higher taxes to enable higher wages for care workers or better investment in services so they can meet needs?
Gandhi perfectly sums up why this is so important for the government to take on board: “A nation’s greatness is measured by how it treats its weakest members.” Social care cannot be left out of conversation and each one of us can do this by ensuring we give it a voice.
Tackling the social care crisis is not about short-term measures; it requires collective action across the UK government. Declaring a social care emergency would kick-start the debate and lead politicians to take tougher action.
Of course, making a declaration is the easy part and it must be accompanied by actions to meet set targets, such as increasing the number of care homes rated as good and better. It may seem dramatic to declare an emergency, but using this language should trigger a response. Progress so far has been too slow. Emergency action is the only option left.
South Korea’s Lee Duck-hee has become the first deaf player to win a match in the main draw of a tournament on the ATP Tour.
The 21-year-old, who is ranked 212th in the world, beat Switzerland’s Henri Laaksonen 7-6 6-1 at the Winston-Salem Open in North Carolina.
“People made fun of me for my disability. They told me I shouldn’t be playing,” said Lee.
“I wanted to show everyone that I could do this.”
He added: “My message for people who are hearing impaired is to not be discouraged. If you try hard, you can do anything.”
Lee does not communicate with sign language but instead uses lip-reading.
During his post-match interview his fiancee Soopin assisted him, clarifying answers for reporters in English.
Britain’s Andy Murray is among players to have come out in support of Lee, adding it must be “difficult” to play without being able to “pick up the speed of the ball” by hearing the sound.
“It’s obviously a huge disadvantage, so to be able to do what he’s doing is a huge effort,” said the 32-year-old, who lost in the first round in North Carolina as he continues his return to singles action after injury.
“We [tennis players] use our ears a lot to pick things up.”
Lee, who faces third seed Hubert Hurkacz in the next round, played his first ATP Challenger Tour event aged 14.
He played mainly in Asia before switching to hard courts in the US, reaching his first final in three years at Little Rock in June.
A charity for people with Tourette’s syndrome has asked a comedian to apologise for his award-winning joke made at the Edinburgh Fringe festival.
Tourettes Action said it was “so disappointed” by Swedish comedian Olaf Falafel’s gag, which won Dave’s “Funniest Joke of The Fringe” prize.
It said the fact the public voted for the joke showed “how we as a nation deal with people who are different”.
A comedian said she was “tired” of her condition being used as a punchline.
Falafel won the award with the gag: “I keep randomly shouting out ‘Broccoli’ and ‘Cauliflower’ – I think I might have florets”.
TV channel Dave asked panellists – comprising the UK’s leading comedy critics – to submit their six favourite jokes made at the festival.
It then put the shortlist to 2,000 members of the public, 41% of whom voted for Falafel’s joke.
One of the panellists who shortlisted the joke, Kate Stone, told BBC Radio 1 Newsbeat: “It’s a good one, it’s a pun, everyone kind of recognises it as… it’s intended to be a joke and I think that’s one of the things that matters the most for this.”
But the chief executive of the UK’s Tourettes Action charity said the “rubbish” joke had brought “shame on Dave”.
Suzanne Dobson said her charity had been about to launch a campaign to stop using Tourette’s as a punchline – “which unfortunately has come about a week too late”.
“Humour is a great way of educating people – but not only is it not funny to poke fun at people with Tourette’s, it’s not even that funny a joke, is it?” she said.
Ms Dobson said the charity’s helpline had several calls on Monday from parents of children with the syndrome who were angered and upset by the joke. Image copyright Tourettes Action Image caption Suzanne Dobson said she found it difficult to understand what the general public found “so funny” about the joke
The charity is now calling on Dave and Falafel to apologise.
“I would ask them to walk in the shoes of somebody with Tourette’s for a day, and then come back and tell me if they find it quite so amusing,” Ms Dobson said.
Olaf Falafel and Dave have been contacted for comment.
Jess Thom, a comedian who has Tourette’s, said she was “not surprised” by the insensitive gag.
“It’s just exhausting. I woke up this morning and I looked at that, and it just made me feel sad and tired,” she said.
“I work hard to try and make good comedy, and to make it accessible to a broad range of people… and it feels frustrating when non-accessible, stereotyped work is rewarded,” she said.
What is Tourette’s syndrome?
Tourette’s syndrome is a neurological condition that causes people to make involuntary sounds and movements, known as tics.
Tics are not normally harmful to a person’s health.
However, physical tics – such as jerking of the head or limbs – can cause pain, discomfort, and mobility problems.
People often associate the condition with swearing or saying socially inappropriate things – but that only affects about 10% of those with the syndrome.
An estimated 300,000 adults and children in the UK live with the neurological condition.
Ms Thom also pointed about that neither of Falafel’s shows at the festival this year were “relaxed performances” aimed at encouraging people with Tourette’s or autism to feel comfortable in the audience.
Olaf Falafel, who claims to be “Sweden’s 8th funniest” comedian, said it was a “fantastic honour” to win Dave’s prize.
Liquid Food Users Fear For Lives
Patients who cannot eat have told BBC News they are petrified and fear for their lives after problems making their replacement nutrition.
They are completely dependent on bags filled with a liquid that contains everything their body needs and is infused directly into the bloodstream.
The NHS in England has described the issue as a national emergency.
“My life is in a lot of danger right now,” Lauren Mitchell, 21, from Stansted, Essex, told BBC News.
She was born with chronic intestinal pseudo-obstruction.
It means the muscles that should push food round her digestive system do not work and her meals would just sit on her stomach. Image copyright Keith Millen Image caption Keith Millen, from Bridgend, is completely dependent on bags of total parenteral nutrition – but supplies have been disrupted
Lauren has been kept alive by total parenteral nutrition (TPN) since she was seven years old.
It was manufactured by the company Calea and is tailored to the needs of her body so it contains precise quantities of vitamins, minerals, sugars, fats and proteins.
Five nights a week, she connects a 2.7-litre (4.7-pint) bag to a tube that slowly releases the contents into blood at her heart. It takes between 12 and 16 hours.
She used to have a weekly supply of TPN delivered on Thursday mornings – but six weeks ago her deliveries were late and then there was none at all.
Two weeks ago, she said, her account with Calea had been suspended.
The reason goes back to an inspection of Calea’s manufacturing site in Runcorn, Cheshire, in June.
The medicines safety body – the Medicines and Healthcare Regulatory Agency – found bacterial contamination in the production area and said the facility’s manufacturing processes did not meet guidelines the MHRA had set out in 2015.
No contaminated bags were discovered but the MHRA said there was a potential risk to patients.
The MHRA said: “When our inspectors identified this issue, we requested that Calea take immediate action to change their manufacturing process to ensure compliance with the MHRA’s published standards.
“This has led to a reduction in output while they consider longer term changes to their processes.”
Calea sources said it had stopped supplying 511 of its patients, chosen based on their medical need in consultation with the NHS.
Normal service would not resume until “towards the end of the year”, they added.
Lauren is no longer receiving the TPN bags tailored for her. Instead, she is being supplied with an “off the shelf” alternative.
“The consequence of that is it has made me very ill,” she told the BBC’s Victoria Derbyshire programme.
She now regularly feels tired, nauseous and dizzy.
“This is a national crisis,” she said.
She told the BBC News website: “If diabetics’ insulin was taken away, then there would be uproar – but because no-one knows what TPN is, no-one’s bothered and no-one knows how serious this is.
“This is our lives on the line here and we need answers and something to be done about it.” Media captionMichelle Collingwood has had intestinal failure since August 2014
Keith Millen, 48 from Bridgend, is also dependent on TPN, because of a fistula that means food “pours straight out” of his digestive system.
He has also been hit by the supply problems since the MHRA inspection.
“For 10 days I had nothing, all I had to go on were litre bags of saline [salt water],” he told BBC News.
“There was nothing, no explanation.”
It left him “knackered” and, Keith said, all he could do was sleep.
“You are that dependent on these bags – if they don’t come in, then it’s hospital, that’s it.
“It’s petrifying, it’s so scary… I’ll die, I know it sounds dramatic but they’re playing around with what I need to survive.”
Keith’s doctors eventually managed to get him on the limited list of patients Calea is still manufacturing the nutrition replacement bags for.
Letters, seen by the Health Service Journal, show NHS England has declared a national emergency over the issue.
“We realise that the disruption presents a clinical risk and have been careful to try and balance the risk of contamination and sepsis against the risk of supply disruption, which we know has already had a significant impact,” Dr Aidan Fowler, national patient safety director, wrote.
“This is a difficult balance but we are of the view that the manufacturing changes are necessary to ensure safe supply now and in the long term.”
A Calea representative said: “Supplying patients is Calea’s number one priority and we apologise to patients and their families for the distress caused.
“We are fully committed to… return to usual and reliable supply levels as quickly as possible during this challenging period.”
‘Hundreds’ Seek Private Clinics For Medical Cannabis
Hundreds of people in the UK are turning to private clinics for medical cannabis, BBC News has been told.
Since its legalisation in November 2018, there have been very few, if any, prescriptions for medical cannabis containing THC on the NHS.
And this has led some patients, with conditions such as epilepsy and MS, to pay up to £800 a month privately.
The government said it sympathised with families “dealing so courageously with challenging conditions”. Image caption Cheryl Keen says it is “disgusting” some patients have to seek private help
Cheryl Keen has been trying to get medical cannabis on the NHS for her daughter Charlotte – who has brain damage and epilepsy – but has been refused twice.
And she had been told it was too expensive and she had not yet tried all the other available options, she said.
“Nothing has happened, nothing has changed [since the legalisation],” Ms Keen told BBC Two’s Victoria Derbyshire programme.
“It’s absolutely disgusting that anyone is having to pay to go private,” she added – something she cannot afford to do. Image caption Charlotte has twice been refused medical cannabis on the NHS
Campaign groups say by not prescribing cannabis medicines with THC, the NHS is limiting treatment options for patients.
A review earlier this month by NHS England, however, highlighted a lack of evidence about the long-term safety and effectiveness of medical cannabis.
NICE said it was unable to make a recommendation about the use of cannabis-based medicines for severe treatment-resistant epilepsy “because there was a lack of clear evidence that these treatments provide any benefits”.
And this has led to the introduction of private clinics.
Grow Biotech, which handles about three-quarters of all medical cannabis imported into the UK, said as of July it had received more than 100 requests for private prescriptions – of which about 60 had been fulfilled.
The new London branch of The Medical Cannabis Clinics has not yet opened but said it had 162 patients on its waiting list – with conditions such as epilepsy, Parkinson’s, post-traumatic stress disorder (PTSD) and fibromyalgia.
“Everyone can get an appointment to come here but not everyone leaves with a prescription for cannabis,” its director, Prof Mike Barnes, said.
“There are some conditions for which there is good evidence for cannabis to be useful, so you’d have to have one of those conditions – like pain, anxiety, or nausea and sickness in chemotherapy or epilepsy.”
The clinic says consultations are carried out to ensure prospective patients have tried all reasonable licensed medication for their conditions and reached “the end of the road for treatment”.
Prof Barnes described the service as a “lifeline for patients in need”.
Prescriptions cost between £600 and £800 a month but Prof Mike Barnes rejected any suggestion the clinic was exploiting patients.
“This is the only way patients who are in significant need can get access to this medicine,” he said.
Government ‘failing patients’
A report last month by the Health and Social Care Committee said the hopes of patients and families had been unfairly raised when doctors were allowed to prescribe cannabis.
Labour MP Ben Bradshaw, who sits on the committee, told BBC News the government was “failing patients”.
“If anything [since its legalisation], it’s become more difficult for people to obtain it,” he said.
“[The government] now has to put this right, by delivering on the promises that it’s made to the patients.”
The Department of Health said in a statement: “To support doctors prescribing these products, we have asked the National Institute of Health and Care Excellence (NICE) to develop additional clinical guidelines and are working with Health Education England to provide additional training.
“The decision to prescribe unlicensed cannabis-based products for medicinal use is a clinical decision for specialist hospital doctors, made with patients and their families, taking into account clinical guidance.”
Zubee Kibria On Getting A Job With CP
It took me just under two years to find my current job as an events and administration assistant at a disability organisation. It wasn’t for a lack of trying. I was born with cerebral palsy and while I try not to let it get in the way of achieving my goals and aspirations, finding another role has not been easy.
I do feel that having a disability is a barrier to getting a job. I’ve applied for numerous positions over the years and it’s been rejection after rejection. It’s been very difficult to deal with, but I never gave up. Saying that, I haven’t sat idle – I’ve been volunteering for Disability Horizons, an online disability lifestyle magazine, for the past seven years.
In June I was so happy to have started a part-time job, working 17 hours a week spread over three days. My salary is £23,000. I’m enjoying it and slowly getting back into the routine of going into an office. My role involves assisting colleagues with organising and planning events, ensuring that all the logistics are in place. Advertisement
I have a real passion for events and have experience, voluntary and paid, planning and organising events such as fashion shows, coffee mornings, parties, meetings and conferences.
I’m in the process of setting up a company that works with businesses to make events more inclusive for disabled people. Attending them has made me realise that not all businesses know how to cater for everyone.
Last year I attended a fashion show which had really long queues to get in and when I did get in, there was no accessible seating for wheelchair users. Organisers need to ensure disabled people don’t have to queue for a long period; they should be given priority access.
This year I’m planning to launch Access My Events to give disabled people the opportunity to enjoy events. I’ve wanted to set up a business for a long time but faced hurdles to get to where I want to be.
I live with my parents and three sisters and one brother in Shepherd’s Bush in London. To be honest, my parents do everything for us all, but I do contribute about £80 a month to rent. I regularly go to an all-ability cycling club, which is free, and I attend a local gym that runs free activities for disabled people.
Due to my disability I have to take a taxi to work and back, which costs about £25 each way. Usually this would be funded through Access to Work (a government programme aimed at supporting disabled people to take up or remain in work) but at the moment I’m having issues getting the funding as I wish to use a particular cab firm that I use regularly. I am having to pay out of my own pocket until funding is approved. Sometimes I have to spend money on cabs separate to work. It can cost anything between £15–£20 depending on where I am travelling to.
I love holidays. Earlier this year I went on a pilgrimage in Saudi Arabia and then on to Pakistan to visit family with my parents. It set me back about £600, plus other expenses. I also love technology exhibitions as I’m really into tech.
Exhibitions tend to be expensive, but if there is anything I like I make a note of it and purchase it from a store for cheaper.
It feels great to be earning after a very long time and having that independence. Although I don’t look too far into the future, I would love my own place that’s adapted to my needs and where I can be as independent as possible. That would be really nice.
Career-wise, I’d like to focus on my company and grow a network of businesses to work with. I’m keen to make inclusivity a staple part of organising an event. I want to work to make a difference for other disabled people through my work, both paid and voluntary.
Sunflower Lanyards
Newsround has this useful article on sunflower lanyards, which signify hidden disabilities.
Does CBD Oil Help Anxiety?
Natalie, who has bought a bottle of Cannabidiol (CBD) oil online, has a few questions she wants answering before she decides whether to take it.
On this journey Natalie meets a hemp farmer, a scientist and tests the product at a laboratory.
CBD products, which are made from a cannabis extract, are very popular but currently there is no specific regulation about their production.
Purposeless Movements By Robert Softley Gale
Becoming a parent for the first time can be nerve-racking for anyone. Knowing it will be twins, the more so. But when your own mother has died in childbirth, the trepidation is intense. “The only birth I’d been at was my own and that all went pretty horrifically wrong,” says Robert Softley Gale. The day after his boys were born, “I was like, ‘Wow! I can do anything!’ That whole reclamation of birth, that it can be OK, felt so important.”
Fatherhood is the latest twist in a heady 18 months for the theatre-maker. At the start of last year, his company Birds of Paradise had its funding cut by Creative Scotland, a decision so bizarre it was hastily overturned. After that low, Softley Gale who has cerebral palsy – a consequence of his traumatic birth – scored one of the big hits of the 2018 Edinburgh festival with My Left/Right Foot – the Musical, a collaboration with National Theatre of Scotland that he wrote and directed.
Then, at the end of the year, Softley Gale split up with his husband (“We get on better now than we did before”) and in June, having met Pauline Cafferkey through a co-parenting website three years ago, he has become the beaming father of two boys. Both Softley Gale and Cafferkey wanted to be parents, neither wanted to go down the surrogacy route, so they opted to bring up the children together. “It’s me as a single guy and Pauline as a single woman getting together and having babies,” he says.
Oh, and this month, he’ll be making his debut at the Edinburgh International festival.
This is characteristic of a man for whom defying the odds is a personality trait. “What are the options?” he says. “You either go out and do the things you want to do or you don’t. My attitude has always been, ‘How do I make this happen?’”
Having overcome obstacles all his life, he is not about to stop now. “What I’ve heard from other parents is they’re all trying to work it out. No one knows what they’re doing, so it doesn’t feel that different to me. Obviously, there are practicalities: I got a new car four weeks before we found out it was twins and if I’d have known at that point, I might have got a bigger car for two car seats, a double pram and a wheelchair. But I’m so used to having to work stuff out that it’s not a big deal.”
He laughs when he remembers being approached by a stranger outside the Theatre Royal, Brighton, where My Left/Right Foot was playing earlier this year. “I must tell you,” they said, “the play in there is really good.”
“I said, ‘Great, thank you, I’ll give it a go.’” Despite it being a show that satirised the appropriation of disabled roles by non-disabled actors, few assumed someone with cerebral palsy might have staged it. That he did – and so well – feels like a step forward. Take the young woman who came up to Softley Gale during the initial run. She had just watched an uproarious comedy but was in tears. “I asked to study drama at school,” she said. “But they told me I couldn’t because I was disabled.”
“There is a real purpose here,” says Softley Gale. “‘Role model’ is a weird phrase, but letting people see that it can be done is very important.”
Now, the experience of fatherhood will feed into Purposeless Movements, a dance-theatre piece in which he turns the involuntary gestures of cerebral palsy into choreography. Revived after a short tour in 2016, it features four men reflecting on how the condition “affects their lives, their gender, their masculinity and their movement”. Because of the contribution of actor Laurence Clark, a self-styled “irresponsible father”, the show had already touched on parenthood, a theme that is likely to develop in this latest run.
“It’s even simple things like holding the babies,” says Softley Gale. “They were born four weeks early so they were pretty small. I thought, ‘With my great clunky hands, how am I going to hold them? Am I going to hurt them?’ But it’s a concern every parent has. For me, the choice was, either I’ll never hold them and they won’t get any bond with me – and what’s the point in that? – or I hold them and there might be a small risk. The way to avoid risk is to never have any contact with anybody. Every relationship is a risk, but we do it anyway.”
• Purposeless Movements is at the Studio, Edinburgh, 19–24 August.
