Mr O’Mara said he will step down in September, following Parliament’s summer recess.
The MP said: “Let everyone be assured that I will be tendering my resignation via the official parliamentary procedure as soon as term restarts.
“I reiterate my apology to my constituents, the people of Sheffield and the people of the UK as whole.”
Mr O’Mara had said he planned to take time out from his official duties to deal with “mental health and personal issues”.
On Saturday he issued a text message saying: “I’m not well and am in the process receiving medical help.
“I am not in any fit state to continue and nor would that be appropriate if I was.”
‘Wasted opportunities’
He was previously accused of treating his constituents with “inexcusable contempt” by his former press chief Gareth Arnold.
In one of a series of highly critical comments posted on Mr O’Mara’s Twitter account, Mr Arnold said: “Sheffield Hallam deserves so much better than you.
“You have wasted opportunities which people dare not to even dream of.”
A day after those comments, Mr O’Mara said: “I want to become a better person again; like I was. I feel I’ve become unrecognisable and I want to make amends.
“I need treatment for my mental health and rest first though.”
Mr O’Mara was also critical of his treatment by Jeremy Corbyn’s office and claimed there was a lack of support from the national Labour party.
In response, a Labour Party spokesperson said: “We take the welfare of our MPs very seriously and, while Jared is no longer a Labour MP, we are concerned for his welfare and we have continued to provide support to him, and will continue to do so.”
Mr O’Mara was elected as the Labour MP for the constituency in May 2017, ousting former Deputy Prime Minister Nick Clegg.
He now sits as an independent MP having quit Labour in 2018 after he was suspended over alleged misogynistic and homophobic comments posted online.
I’m sad and shocked to read this. I fully agree with Charlotte Liddiard- a relationship ended by death does not ‘end’ in the same way as one that ends by choice. Rather it is taken away from those left behind. The suggestion that families left behind by death have made a choice to end relationships is an extremely insensitive one.
A grieving new mum has slammed the ‘totally insensitive’ Department for Work and Pensions for telling her ‘your relationship has now ended’ – because her husband was dead.
Mum-of-one Charlotte Liddiard returned from the supermarket in November last year to find her husband and new dad Chris dead from a heart attack – at just 32.
The 32-year-old widow contacted the DWP the following day to update her Universal Credit claim to a single person’s account after her partner’s tragic death just weeks after his daughter’s first birthday.
Yet when a member of staff updated her change of circumstances on the online system, she discovered they had written in the ‘notes’ section: ‘your relationship has now ended’.
The grieving widow was stung to see this message (Image: Kennedy News and Media)
Distraught by the ‘awful’ note, Charlotte claims that as far as she is concerned, her relationship has not ‘ended’ – her husband was simply taken too soon.
Bereavement charity Widowed and Young slammed the DWP for the ‘devastating slap in the face for someone who’s struggling to come to terms with the death of their soulmate’.
The DWP were forced to ‘apologise unreservedly’ to Charlotte after she complained and claim they are reviewing their system in light of the incident.
Charlotte, from Reading, Berkshire, said: “When I logged on, I felt awful seeing that.
“As far as I’m concerned, I’m still married. My relationship hasn’t ended – he was taken from us.
“It’s always going to be awful regardless, but it’s one of those things. It’s annoyed and upset me.
“I’m sure many other people in my situation feel the same.
“I complained when I spoke to someone last week. I explained something should be done about it because it’s really insensitive.
“They all blame it on this computer system, but it must be controlled by people?
“Something so personal shouldn’t be the responsibility of a computer.”
At the end of last year, Charlotte arrived home from grocery shopping to find Chris, who was looking after their daughter, had passed away.
After performing CPR, new dad and business owner Chris was rushed to hospital where he was pronounced dead.
Now Charlotte and their little girl Livvy, 21-months-old, are coming to terms with life without their much-loved husband and dad.
Charlotte said: “Chris’ death was very sudden and unexpected.
“He was fit, healthy, not overweight, had never smoked. He just suddenly wasn’t there anymore.
“I’m the one who found him and did CPR but it was too late.
“The next day I put a message on my universal credit account saying that my husband had died and I didn’t know what to do.
“They sent me a letter saying I would get the couple’s element for three months, then it would go down to a single person’s claim.
“I knew that had to happen and I thought it would happen automatically, since I’d informed them.
“A woman called a few weeks ago and said I was still on a joint claim.
“She said I needed to manually log in to [change] it. I didn’t want to do that – it would be too difficult [emotionally].
“She offered to do it for me and that’s how it changed. When I logged in to check it, I saw that note.
“Even if I had had a break-up, it’s still not nice to see anyway. There should be an option for if you’re widowed.
“They shouldn’t put it on me to go on there and tick ‘my relationship’s over’.
“Although it’s an automatic computer thing, it’s still set up by a human.”
When Charlotte initially complained to the DWP staff over the phone about their terminology, she claims she was told it was an automated computer.
Charlotte said: “When I complained to a member of staff, he simply said it was an automated computer. It’s not on. It’s hard enough.
“I wasn’t expecting anything from DWP. The guy was apologetic, but it seemed like he was saying ‘that’s how it is’.
“It has been hard. Generally people don’t understand unless it’s happened to them.
“I’m a member of Widowed and Young – a charity for widowed people under 50.
“It can be quite difficult at times to relate to people, but being part of the charity really helps.”
After the Department for Work and Pensions was contacted, a spokesperson confirmed staff would be reviewing its system for the future.
A spokesperson for the DWP said: “We have contacted Mrs Liddiard to apologise unreservedly for the distress caused.
“We’re reviewing and improving our systems to ensure this is addressed.”
The stage at the Old Red Lion Theatre in Islington, where Crystal Clear is currently running, is the most intimate many audiences will ever have seen. The set is main character Richard’s (Gareth Kennerley) ‘bachelor pad’ flat and the audience sits in his living room- so close to the actors that they actually sit among us on Richard’s favourite armchair.
Richard has diabetes and has lost the sight in one eye. He has moved out of his long-term partner Jane’s (Rakhee Sharma) home into his flat- something that causes many arguments with Jane. One argument almost turns violent- at this point the audience would be forgiven for feeling too close to the action for comfort.
The audience knows that Richard’s real reason for living in the bachelor pad is Thomasina, (Gillian Dean) a very beautiful, completely blind woman with whom he has actual conversations. Thomasina seems far better suited to Richard than Jane ever does.
The serious and very important themes of the play (acceptance of disability and finding love as a disabled person) could have been explored for longer if the script had not overshadowed them by going into too much detail about Richard’s sexual encounters with both women. Jane makes no secret of the fact that she didn’t sleep ‘after we screwed’ and the scene in which Richard strips completely naked (thankfully with his back to the audience) so that Thomasina can ‘get to know him’ is, quite simply, unforgettable. At that point the audience feels more than a little uncomfortable about the intimacy of the stage and set.
The audience was expecting to see a love story between two disabled people and, at its heart, Crystal Clear is exactly that. Richard and Thomasina continue their relationship after Jane leaves Richard, who eventually becomes totally blind. His struggle to accept this is shown in flashes which feel too brief. In the most powerful scene of the play, Thomasina admits her love for Richard after she has considered leaving him because she feels her life would be easier with a sighted man. Unfortunately, this is where the play ends, so the very important question it raises (can two disabled people find lasting love with each other in a world not built for disability?) is not explored enough.
For disabled people today, it is to be hoped that the answer to that question is a positive one. Crystal Clear was written in the 1980s and Thomasina’s attitude to the question feels negative and slightly outdated.
Crystal Clear runs at the Old Red Lion Theatre until 17th August 2019.
A young writer with cerebral palsy, dyspraxia and a congenital left-sided weakness says he was humiliated when police handcuffed and searched him for looking “spaced out” and “walking with a limp”.
Charlie Hale, 28, also known as Charlie Fox, said it was “dehumanising” to be forced to explain his medical history while handcuffed in the middle of the street by officers who suspected he was in possession of drugs.
Hale was stopped and searched for “looking spaced”, “walking with a limp” and “looking to the sky”, according to a written record of the stop and search that was shared with the Guardian.
“The ignorance they displayed on neurological and physical impairments was really galling and shocking to me,” Hale said.
Hale was walking around his neighbourhood in Camberwell, south London, on Sunday 7 July when a police car pulled over and two officers stopped and handcuffed him. “They asked me why I thought they were stopping me. I jokingly said: ‘Because I had a wonky eye,’ and the female officer who apprehended me said yes in response, which obviously doesn’t feel great,” Hale said.
The police took Hale’s wallet and phone and asked if he was on drugs, Hale said. “The assumption was that there is something criminally wrong with my body,” he said. “I felt like I didn’t meet a certain benchmark of what normality is.”
The police eventually took off the handcuffs and let Hale go. “They weren’t apologetic about it, they acknowledged it in a very brisk way. The female officer said we’d let you go because you’ve got a problem. And the other officer said these are things that have been going on since you were born. It just felt like you weren’t really a person. It was degrading.”
During the Conservative leadership contest Boris Johnson pledged to increase stop and search powers as part of a drive to tackle rising knife crime.
Hale said he was keen to raise awareness of the impact of stop and search on disabled people, and this was not the first time he had been stopped. “Every time I go out I think they might stop me this time. It introduces another level of fear and anxiety.”
He added: “This affects whole swaths of unrepresented members of society, whether they happen to be black or ethnic minority or a disabled person, and it’s pretty grotesque.”
He called for the Met and other police forces to be trained to have better awareness of people with different conditions. “What does it say as a society when you’re immediately condemned as criminal or deviant? You can’t just walk around on your street where you’ve lived for years and years because you might be accosted.”
Simon Messinger, a borough commander with the Met, said: “Officers stopped a man on suspicion of possession of drugs in Southampton Street in Camberwell on Sunday 7 July and carried out a search. The gentleman in question made the officers aware that he had a disability affecting his movement. No drugs were found and he was then free to go on his way.”
The Met is reviewing footage from a bodyworn camera showing the interaction.
David Musker, a Met commander of frontline policing, said: “Stop and search powers must be used ethically, courteously, respectfully and subject to appropriate scrutiny. We acknowledge that historically stop and search has caused concern in some communities and we have taken significant steps to address concerns, improve training and improve service delivery over the last 10 years.”
Musker said there had been a 20% reduction in the number of complaints about stop and search in the past year and every officer received training to understand different disabilities and how they could affect people.
Swedish activist Greta Thunberg has recorded an essay about climate change for The 1975’s new album, Notes on a Conditional Form.
In the essay, which she recites over ambient music from the Manchester band, Thunberg calls for “civil disobedience” and says “it is time to rebel”.
“There are no grey areas when it comes to survival,” she adds on the track, which was released overnight.
Thunberg, 16, has become one of the leading voices in the climate debate.
She rose to prominence last year when she began skipping school to take part in protests.
The new track will not be a single in its own right – but will feature as the opening song on the band’s album.
This is in keeping with the band’s previous records, all three of which have opened with an ambient instrumental track entitled The 1975.
Thunberg’s track will also take that title – but this will be the first album opener from the band to feature speech on top of the music.
Notes on a Conditional Form was recorded at the same time as The 1975’s last album, A Brief Inquiry Into Online Relationships, which was released in November last year.
The album helped them win two Brit Awards earlier this year, further cementing their status as one of the biggest bands in the UK.
The 1975 are currently on a world tour, and will play gigs in Italy, Korea, Romania, Singapore, Ukraine, Dubai and Australia in the coming weeks.
It is likely they will fly to many of those countries, despite air travel being a significant contributor to climate change.
Thunberg took a 32-hour train journey to speak at the World Economic Forum in Davos earlier this year, in order to avoid flying.
On the new track, Thunberg can be heard telling listeners: “We are right now at the beginning of a climate and ecological crisis. And we need to call it what it is: an emergency.”
“Today we use about 100 million barrels of oil every single day,” she continues. “There are no politics to change that. There are no rules to keep that oil in the ground, so we can no longer save the world by playing by the rules, because the rules have to be changed, everything needs to change, and it has to start today.”
The essay is direct in its message but short on actual practical measures which she thinks should be put in place.
She does, however, say: “The main solution is so simple that even a small child can understand it. We have to stop our emissions of greenhouse gasses.”
Thunberg became famous last year after she protested every day for three weeks during school hours by sitting outside the Riksdag (the Swedish parliament), calling on the government to reduce carbon emissions in line with the Paris Climate Agreement.
She gradually built up an online following and encouraged young people around the world to take part in protests.
Thunberg has since become a prominent political figure and has spoken at the European Parliament in Strasbourg and the UN’s Katowice Climate Change Conference.
DWP officials admitted the figure today at a fractious hearing examining a fraud suspected of ensnaring thousands of innocent claimants.
The BBC revealed fraudsters have approaDWO ched struggling families and offered to get them cash from the Department for Work and Pensions.
They split the money, but claimants then discover it is only an “advance payment” loan – which has to be paid back to the DWP in full over 12 months.
But despite claims that many cases involve innocent victims, officials say more than 1,400 benefit claimants have been interviewed.
Emma Haddad, the DWP’s Director General for Service Excellence, said: “So far we have interviewed around 1,400 under caution.
“There will have been other interviews which are called compliance interviews which are slightly different.”
The admission came during a hearing before MPs today at the Commons Work and Pensions Committee.
Labour MP Ruth George was shocked by the practice of interviewing people who could potentially be innocent victims under caution.
She said: “Do you feel an interview under caution is appropriate?
“Some of the very vulnerable victims… are absolutely terrified.”
Ms George said letters sent to people caught up in fraud are “extremely scary”.
The Labour MP added: “They say to people if you ignore the letter… they could end up being prosecuted and they could end up in jail.
“This is why people are so scared.”
Officials did not make clear at the hearing whether the 1,400 cases involved only the scam uncovered by the BBC, or also included other fraud cases in which claimants were responsible.
In theory, some could involve deliberate fraudsters who are rightly being pursued for wrongly claiming from the benefit system.
Work and Pensions Secretary Amber Rudd insisted the interviews are “not supposed to be confrontational” and people do not always need a legal representative.
She said: “They’re supposed to be how can we help this person who has been scammed in some way.
“Do they need signposting to somewhere that can actually help them?”
Victims of the Universal Credit fraud will have to pay back some of the money involved.
DWP officials said earlier this month:
If you were paid the full advance into your bank account through fraud and kept it all, you will need to pay the full amount back.
If you were paid the full advance into your bank account through fraud and the scammer took a cut, you will need to pay back the portion you kept.
If the scammer was paid the full advance into a bank account and gave you a cut, you will need to pay the cut back.
Keven Walgamott, whose arm was amputated below the elbow after an accident, can now feel 119 different touch sensations through the prosthetic as if it were his own limb.
He is able to distinguish between large, small, soft and hard objects when blindfolded, and handle delicate objects such as grapes and eggs. Everyday tasks such as putting on his wedding ring, peeling a banana or holding a mobile phone are now possible.
“The most amazing thing for me is what the team was able to do,” said Walgamott. “[They] take a bunch of mechanical pieces and provide, through a computer, not only the ability to move all fingers and grasp things but be able to feel again.”
The prosthetic hand and wrist has been in development for 15 years. Electrodes were implanted in the remaining part of his arm, allowing communication between the prosthetic hand and his brain. The hand can move in six directions and is equipped with 19 sensors that detect touch and positioning.
The arrays interpret the signals Walgamott’s brain sends to his arm nerves, and a computer outside the body translates these into digital information, which then instructs the prosthetic to move as the wearer intends. They also provide Walgamott’s nerves with computer-generated touch signals from the prosthesis, which are then interpreted by his brain.
The breakthrough by a team at the University of Utah, published in Science Robotics, was to supply Walgamott’s brain with electrical signals more closely matched to those that would be sent by nerves from a human hand. “If we communicate with the body in the body’s natural language, that information becomes more useful,” said Dr Jake George, a graduate research fellow and the lead author of the paper.
Next, the team plan to expand the sensory information available to the wearer, including pain and temperature. Furthermore, since the prototype requires tethering to a stationary computer, they are developing a portable system and hope that in the next two years test subjects will be able to take the hand home to use.
Aside from the technical hurdles facing the group, George said “one of the next challenges … is to convince insurance companies that this technology is going to be worth the money”. He is hopeful that testimonials from early users such as Walgamott could serve as evidence for the personal and psychological benefits of the prosthesis.
However, Dr Sarah Wilkes, a research fellow at UCL’s Institute of Making who was not involved in the work, said more research would need to be done on the emotional aspect of these types of advanced prosthetics.
“This technology would benefit from rigorous psychosocial research on the users’ emotional responses,” she said. “In our work on material preferences in prosthetics, we interviewed 32 prosthetics users about their relationship with their limb. We found that silicone rubber – the most commonly used material in prosthetics – was very divisive: about half of the users liked it but the others hated it, and that’s problematic. This shows that it’s important that new technologies are centred around the needs and desires of the end users.”
Asked why he had taken part in the study, Walgamott said: “I have friends who are double hand amputees. I get along quite well with just one hand, but they could certainly use the help. For them and for future people, I went ahead and did it. I hope this work will provide a springboard to future enhancements for prosthetic hand use.”
During San Diego Comic-Con on July 20, Marvel Studios president Kevin Feige revealed some details about the upcoming film, The Eternals. It was revealed that Ridloff will play the role of Makkari, making her the first deaf superhero in the Marvel Cinematic Universe.
Zhao said that the film is about “this group of incredible immortals but through their journey we really get to explore what it means to be human and humanity on our time on this planet.”
The film is shooting in London and is set for release on November 6, 2020.
Lauren Ridloff appeared in the 2018 Broadway revival of Children of a Lesser God. She was nominated for a Tony for her performance as Sarah Norman. She also received a Best Actress nomination by the Berkshire Theater Critic Awards for her role in the 2017 Berkshire Theater Group production of Children of a Lesser God.
Ridloff appears in the Palme D’Or nominated film Wonderstruck, directed by Todd Haynes and starring Julianne Moore and Michelle Williams. She can be seen in John Legend‘s music video, Love Me Now. Ridloff was the first Miss Deaf America of African-American and Mexican descent.
As a gay man with a disability, Daniel Monks is drawing on his life to find empathy for a child with unrelieved pain. In Sydney Theatre Company’s production of Lord of the Flies, the actor is playing Roger, a vocal and violent 11-year-old who appears to be a sociopath, enabling authoritarian rule over a group of boys who survive a plane crash on an island.
The actor has found allusions to Roger’s unspecified past trauma in both William Golding’s original novel and Nigel Williams’s stage adaptation, now being directed by Kip Williams. “In the play, Roger is the only character who refers to anything sexual in tone,” says Monks during a rehearsal break, the single walking crutch he uses on and off stage by his side.
“I’ve imagined, with Kip’s collaboration, that Roger’s come from a past of sexual abuse. I don’t think the audience will see that [back story]; it’s more for me to understand him, because he has a lot of pain and anger that he can’t reconcile, and his violence is a way of discharging that pain.”
Monks, 30, grew up in Perth. The son of a casting agent, he always wanted to be an actor but, at age 11, a physical education teacher noticed he favoured one side while walking. A botched biopsy followed, leaving him quadriplegic.
Monks began high school in a wheelchair, accompanied by a carer. But after neurosurgeon Charlie Teo removed a tumour from his spinal cord – “he saved my life” the actor says – and months of intensive therapy, Monks regained the use of the left side of his body. Some paralysis remains on his right side.
The physical ordeals occurred around the time he started to realise his attraction to other boys, compounding the pressure he felt on his sense of self.
“All the messaging I had from media and society was being gay and disabled were undesirable things,” Monks recalls. “You were lesser than your straight, able counterparts, and I had a lot of shame around it. Before I was out to anyone, I used to watch queer cinema and gay short films on YouTube, and that made me less alone in my struggle with my sexuality. But I never found that [storytelling] with disability, especially with young [actors] that felt real to my experience.”
Instead, Monks had to create his own. He was nominated for a 2018 best lead actor Aacta award for his role in Pulse – a film he also wrote – about a disabled teen who undergoes surgery to become a beautiful woman without a physical disability.
Lord of the Flies director Kip Williams says he had been wanting to work with Monks for years, having been inspired by the actor’s past performances. “He was excited to play a character in this piece who could be physical, strong and powerful, and so often he’s not given the opportunity to play roles of that nature.”
Casting Monks is not the only innovative choice Williams has made in this production. While Lord of the Flies is “usually described as being about the darkness that’s inside all of humanity,” says the director, “I see it as being about masculine cultures of power, and patriarchal power values, and how in the absence of adults these young boys play out ideas of masculinity. That is what generates the violence and dissent on the island.”
While the 1963 Lord of the Flies film adaptation directed by Peter Brook had a white male cast and is “generally considered to be a very accurate rendering of Golding’s novel”, Williams says his production of Nigel Williams’s script has “no white, able-bodied cisgender males” among his all-adult cast of 11 – a deliberate strategy to draw attention to characters “performing gender”; emulating fathers, uncles and other male leader role models.
Further undermining the notion that straight, white men should carve up power in the world, female actors play key boy characters. Contessa Treffone, for instance, whom Williams directed as pure-hearted Dolour Darcy in last year’s The Harp in the South, plays Jack, who violently opposes democracy. Film star Mia Wasikowska, in her first stage role, plays Ralph, the son of a naval officer who demands to be elected leader by vote.
Casting Treffone and Wasikowska as alpha males “speaks to the absurdity of how for many centuries we’ve had the same types of people occupy leadership roles”, Williams says. Broadly, the cast is also racially diverse. “There’s an irony in performing this play right now when we have a president in the White House who writes racist tweets, makes misogynist statements and can instigate transphobic policy and occupy that office,” Williams says, “and yet he was beaten by 3 million votes by Hillary Clinton.”
Monks hopes there will be more roles for actors with disability in future, given the current paucity of opportunities. In November, he will travel to London to star in the Mike Lew play Teenage Dick, a high school-take on Shakespeare’s Richard III, at Donmar Warehouse.
“Usually, there’s just no representation of disabled people,” Monks says. “Not seeing yourself and your place in society is hugely detrimental.
“I’m very interested in showing disabled people can be as many different types of things as possible – not only out of a desire for more interesting roles, but for wider society to see disabled people as more complex human beings, just like themselves.”
Universal credit, which is being introduced in stages across the UK, combines six separate benefits for working age people into one payment.
Supporters of the welfare reform say it helps simplify the old complicated benefits system.
But since its introduction in 2013, it has been accused of making things harder for people receiving it.
Addressing the House of Commons on Monday, Work and Pensions Secretary Amber Rudd said claimants who had been entitled to the severe disability premium would be given “ongoing transitional payments” as they moved across to universal credit.
She said people who had already moved to the new system would be eligible for backdated payments of the disability benefit.
Ms Rudd said claimants would receive up to £405 per month alongside the universal credit benefit, instead of the previous maximum figure of £360.
She said by 2024-25 about 45,000 of the “most vulnerable” claimants would benefit from the support package worth £600m.
But shadow work and pensions secretary Margaret Greenwood said Ms Rudd’s approach was “deeply controversial”, adding: “You have left it until the 11th hour to bring these regulations to Parliament.”
SNP employment spokesman Chris Stephens added the short notice of the changes was “disrespectful”.
The BBC’s social affairs correspondent Michael Buchanan said the DWP had been forced to agree to make the back payments after the government was successfully sued by two disabled men in June 2018.
The men had lost their severe disability premium top-up payment when they were moved onto universal credit. The High Court found they had been discriminated against.
Ms Rudd said the next stage in the rollout of universal credit later this month will see her department encouraging thousands of people in Harrogate, North Yorkshire, to apply.
Benefit claimants are being left thousands of pounds a year out of pocket because jobcentre staff are failing to inform them that they will be worse off if they move prematurely to universal credit, MPs have said.
The Commons work and pensions committee accused the Department for Work and Pensions (DWP) of failing to inform, protect or compensate claimants who stand to lose up to £400 a month after voluntarily and unnecessarily signing up to universal credit.
When claimants discover that they are worse off, the DWP routinely refuses to allow them to move back on to legacy benefits – a lock known internally as the “lobster pot” – even when they complain that they were incorrectly advised to claim by department officials.
The committee cites the case of a man with anxiety disorder who heard a radio advert for universal credit and assumed he had to make a claim immediately. He and his wife ended up irreversibly £400 a month worse off. “At no stage was he informed that it was not actually necessary for him to make the claim,” the report says.
MPs said universal credit should come with a health warning because it was so difficult for claimants to work out whether it was in their interest to move on to it, and officials took so little care to advise them properly or correct mistakes. All claimants inadvertently left out of pocket should be compensated, they said.
The committee said it had little confidence that all DWP and jobcentre staff had a comprehensive understanding of what moving to universal credit meant for different claimants, and cited evidence that officials were not adequately trained in the new system or properly understood the old system.
Its chair, Frank Field, said: “In the history of humankind, has there ever been an example of a government introducing a fundamental welfare reform and none of its employees being able to tell if it will leave people better or worse off?”
Currently, claimants who wait to be moved to universal credit under the managed transfer process taking place during the next three years will have their income protected, but those who move prematurely or as a result of changed circumstances will not.
Ministers originally promised that no claimant would be worse off in cash terms after moving to the new benefit. But the committee estimates about 3 million working families now stand to lose out under universal credit – compared with 2.4 million who will gain – making it critical they receive the correct advice.
Those that lose out will see a drop in income of an average £59 a week, or around £3,000 a year. Groups affected include families with a disabled child who stand to lose £30 a week, some disabled claimants who will lose £70 a month, and self-employed claimants who can lose up to £8,000 a year.
The trapping of claimants in the “lobster pot” of universal credit was just one of a number of serious flaws and unfairnesses highlighted by MPs in a wide ranging progress report on the troubled evolution of the online benefit project, which its director general calls “the biggest digital development in Western Europe.”
The committee remains deeply concerned that universal credit is far from fit for purpose and the DWP is moving too slowly to bring in design changes announced by ministers to address problems that have left claimants in debt, food insecurity and at risk of eviction.
A DWP spokesperson said: “Universal credit helps people into work faster than the old system and provides targeted support. Around one million disabled households will gain an average of £100 more a month, and changes to work allowances mean 2.4 million households will be up to £630 per year better off.”
For any new student, coming into a lecture theatre or a laboratory can be nerve-wracking – especially if you can’t hear.
That was the reality Liam Mcmulkin faced when he began studying life sciences at the University of Dundee in 2015.
Born deaf, Liam was the first person in his family to go to university, after receiving an undergraduate scholarship from The Robertson Trust.
He admitted having fears about what life as a student would be like, particularly when it came to lectures:
“When I applied to university, I was worried about two things,” he told BBC Scotland’s The Nine.
“Firstly, I was at school with 10 other deaf people but now at university, I was the only deaf person. How could I communicate?
“Secondly, English at university is at a higher level, would I be able to cope?
“I thought I would just apply anyway.”
Frustrated at the lack of complex scientific terms in British Sign Language (BSL) during classes, Liam decided to take matters into his own hands.
“Watching the interpreters for a one hour lecture is very tiring,” he said.
“There are a lot of new words and scientific words are often very long, like ‘deoxyribonucleotide’ and ‘deoxyribonucleoside’.
“Sometimes the interpreter would be finger spelling for ages and I was having to watch it.
“We would make up new signs which meant it was easier next time, but it also meant I had to learn new signs which was very tiring.”
Liam began his project, with funding from the BSDB Gurdon Summer Studentship and The Robertson Trust.
Within two months he had invented over one hundred new signs, which are now recognised by British Sign Language and used across the country.
Asked how he came up with his own signs, Liam said: “You have to think about the meaning of the word.
“Sign involves hand shape, orientation and location to signify the meaning.
“It’s definitely much easier because there is less finger spelling.
“It is easier for the interpreter as well as for me. So, maybe when I meet other deaf scientists we will have the signs to communicate rather than finger spelling, because I don’t want that.”
Liam starts a master’s degree in September and in future, hopes to become a researcher.
He plans on building his library of signs to make science accessible to everyone.
“I feel really happy because I know from my own experience how difficult it is to learn during my lectures,” he said.
“Now the new signs have spread, I feel it will be much better for future students.
It’s heartbreaking to see that children with special educational needs are being left without the support they so desperately need (Special needs education is breaking our budgets, say councils, 19 July). Every child in this country has been promised a world-class education. Instead, they’re being constantly held back because of a chronic lack of funding.
The responsibility to fix it now falls to the incoming prime minister. They’ll inherit a broken system that is failing disabled children. They’ll have to find a way of reversing cuts to staff and repairing the damage caused by years of underinvestment. But they’ll also get the chance to have a lasting impact on the lives of over a million children. Whether they choose to take it, and how quickly they act, will show exactly what kind of leader they want to be. Steve Haines Director, National Deaf Children’s Society
The government was condemned for failing to compensate the vulnerable claimants – despite losing a High Court case – amid growing fears of a further delay until the autumn.
Ministers have also failed to pass promised regulations to start the next stage of universal credit, with just four days to go until MPs pack up for their long summer break.
Frank Field, chairman of the commons work and pensions committee, attacked the delays, saying: “About 10,000 people are still waiting for compensation.
“Why won’t the government stop fighting this all the way through the courts and just get on with giving disabled people the money they’re owed?”
Amber Rudd, the work and pensions secretary, will be confronted over the impasse in an evidence session on Wednesday – although she could be moved hours later, in Boris Johnson’s expected reshuffle.
The Department for Work and Pensions (DWP) has been under pressure to act over people with severe disabilities since losing the court case last year – and again on appeal in May.
Two men known as TP and AR, and a woman known as SXC, who received severe disability premium (SDP) benefits, successfully argued they were discriminated against when moved onto universal credit.
TP and AR received £6,517 and £4,788 respectively in compensation for the pain and distress caused, plus payments of £173.50 and £176 a month respectively to cover the shortfall in their benefits.
The government then proposed regulations to give SDP claimants moving onto universal credit before January this year compensation of £80 a month, with £180 a month for those moved afterwards – but they have not been passed.
Mr Field said: “The government belatedly accepted that it had been wrong to push some of the country’s most vulnerable citizens onto universal credit, slashing their incomes in the process.”
The committee chairman released a letter from Ms Rudd in which she said she was not expecting a delay to the next stage of universal credit, known as “managed migration”.
It has already been scaled back to just 10,000 people, after ministers scrapped a vote on transferring 3 million because of fears the new benefit – which merges six working-age benefits into a single payment – pushes people into poverty.
The committee noted there were just four sitting days before the House of Commons rose for summer recess, suggesting the government had run out of time.
“With no sign that those regulations will be put to parliament this week, it seems clear that the pilot will not be starting on time, or anytime soon,” it said.
Claimants’ efforts to appeal perceived mistakes with their application are being blocked or delayed in some instances, according to the Child Poverty Action Group (CPAG).
The group accused staff at the Department for Work and Pensions (DWP) of not understanding the rules about how Universal Credit award decisions could be challenged, and of attempting to discourage individuals from pursuing appeals.
The warning comes after CPAG analysed 1,600 benefits cases as part of its Computer says ‘No!’ – Stage two: challenging decision report. It found there were issues with people who wanted to submit a request for a decision to be reviewed, a mandatory reconsideration, and those who wanted to appeal after receiving a mandatory reconsideration notice.
The report claimed was understandable that the multiple obstacles claimants faced meant they lost confidence and abandoned their efforts to challenge decisions..
‘UC staff do not always understand’
“Universal Credit staff dealing with claimants do not always seem to understand the rules as to how decisions can be challenged, and efforts to make the system more user-friendly by encouraging informal online chats can mean claimants are prevented from exercising their rights and ultimately cannot make sure their awards are corrected,” said CPAG’s chief executive Alison Garnham.
“The system throws up so many obstacles to getting a decision reviewed that some claimants – often the most vulnerable – are likely to give up and lose out.
“The failure to ensure Universal Credit operates in a way that upholds basic legal duties is cause for serious concern,” said Ms Garnham.
She added that 130,000 individuals and families were moving on to Universal Credit each month. “If it isn’t accountable, and if appeal routes are not crystal clear and readily available to claimants, then Universal Credit isn’t fit for purpose.”
Universal Credit is a controversial benefit which rolls six legacy benefits into one monthly payment. It has faced widespread criticism for being a complicated system that leaves claimants facing long waits for their awards and struggling to get by.
Claimants lose confidence
Dame Laura Cox, justice of the High Court, reiterated that the complexity of the appeals process associated with Universal Credit meant claimants “understandably” lost confidence and gave up.
“Erroneous decisions therefore stand, to the detriment of individual families and to society as a whole.
“If, due to complexity, inflexibility or incoherence, the appeals process in Universal Credit cases is almost impossible to understand and to pursue effectively, incorrect decisions go unchallenged and suffering is prolonged. Children fall through that safety net and our system of justice is undermined,” said Ms Cox, who wrote the foreword to the CPAreport.
She called for more to be done to ensure individuals were empowered to appeal decisions. “The right to appeal against an adverse decision is an important part of respect for individual dignity, for the accuracy, predictability and consistency of decision-making and, ultimately, for the rule of law,” she said.
Obstacles
The CPAG reports highlighted the various obstacles vulnerable people faced in challenging Universal Credit decisions.
“When claims are refused by DWP officials before the first payment is made, it is very difficult for claimants to challenge these decisions because previous online accounts often cannot be accessed and claimants are required to start a new claim before they can send an online message querying the refusal, delaying the resolution of the issue even further,” it read.
The report also claimed individuals were “dissuaded” by DWP officials from requesting a mandatory reconsideration for various reasons. “Examples include being told that the request is unlikely to be successful, or that the decision is not appealable (in circumstances where it is), or being encouraged to have a journal chat with their work coach instead of trying to resolve the issue via formal channels.”
In some cases, claimants faced waiting up to 26 weeks from submitting their challenge to receiving the mandatory reconsideration notice.
The group also said it was “not lawful” for the DWP to demand evidence to process requests for mandatory reconsiderations as in some cases, it was not possible to provide evidence.
Advice for DWP staff
CPAG advised the DWP to educate its staff on the various options for making a mandatory reconsideration request and to publicise them.
A DWP spokesman said: “We continue to work closely with CPAG and welcome the opportunity to do so. We have already improved guidance online and advice to staff about mandatory reconsiderations.
“Anyone who disagrees with a benefits decision is able to request a mandatory reconsideration either online, by phone, in person or in writing.”
Readers, we don’t usually take stories from Guardian Australia but we felt that this was a very important and a universal issue. We welcome your thoughts.
Ange McReynolds was 32 when she first asked one of her friends to “call up to ask for an escort”. McReynolds, who has severe cerebral palsy, represented Australia at the 2000 Paralympics in the sport of boccia, which is similar to bocce.
Still, in her words, she relies on others to do everything for her. The same goes for sex. “I access the service once a month,” McReynolds tells Guardian Australia. “It costs me $280 for two hours.”
Now 39, McReynolds says that, if she could, she would go more often. Every second week would be her preference. “I would like to see the NDIS fund it, because some of us can’t afford to see a sex worker,” she says in an email interview.
The minister responsible for the national disability insurance scheme, Stuart Robert, thinks he knows what the public might think about that.
Last week, Robert declared that the idea the scheme might fund sexual services did not meet “community expectations”.
The story was a tabloid’s dream: a woman seeking “sexual release” paid for by the taxpayer. In the end, reporting of the tribunal decision was quite restrained, but if advocates were relieved, it was short-lived.
Soon after the news broke, Robert said the agency would appeal to the federal court, a rare move that increases the likelihood of a precedent-setting decision.
If there was any consolation for advocates, it’s that the tribunal had approved funding for sexual therapy, which is generally not “hands on”, but did not rule on sex worker services. Much to the confusion of advocates and the agency, this was what the applicant had actually sought.
The appeal means the federal court may yet rule that the insurance scheme must fund sexual services for people with disabilities – a huge public win for the disability community after years of uncertainty.
‘It just seems a bit unfair’
Replacing the disjointed state-by-state system, the NDIS now provides funding packages to cover “reasonable and necessary” support for more than 300,000 Australians. More than 100,000 of these people are receiving support for the first time.
There is no data on how many people might want to access sexual services through the NDIS – but advocates claim that some people had already done so previously and the agency had simply turned a blind eye.
It later had a public change of heart, according to disability groups, and in the recent Administrative Appeals Tribunal case, the agency warned that offering sexual services presented a financial risk to the scheme’s future.
Matthew Bowden, the co-chief executive of People With Disability Australia, disagrees. “It’s always been a minority, niche request,” he tells Guardian Australia.
“It’s not that every person with MS or every single person with a physical disability or intellectual disability or any impairment … is going to want to include access to sex workers in their package.”
The sex worker Scarlett B Wilde acknowledges she has a good reason for wanting the NDIS to pay for people to see her.
“I put my hand up, I have a vested interest within my business,” she tells Guardian Australia. “But at the same time, it’s the client that misses out. They lie there, you know, and for 40-odd years they might never have sex. It just seems a bit unfair.”
Wilde was trained by Touching Base, a long-standing referral service that connects sex workers and people with disabilities.
When the star of Scarlet Road, Rachel Wotton, conducted a survey for a research paper asking about 70 New South Wales-based sex workers if they’d ever seen a client with a disability, she found 90% had. The same proportion had seen the client more than once. And asked how often their disabled clients would return, most said the main factor was whether the person could afford it.
Among her clients with disabilities, Wilde says there’s “quite a broad spectrum”. She sees those with intellectual impairments, such as Asperger’s, as well as people who have cerebral palsy or acquired injuries.
“I have a thorough understanding of what the client would like me to do and not do,” she says. “The other thing to be aware of is that usually, the client … they’re handled a lot. They have carers that genuinely care for them, but it’s very mechanical. Sometimes they miss being handled in a more loving, intimate way.”
The Sydney sex worker Saul Isbister started Touching Base in 2000 after he noticed a growing demand from people with disabilities. Most of the time, the referrals come from support staff or family members, in part because of the nature of the person’s disability.
“There are others who directly approach us as clients themselves,” Isbister says. “For some people, all they want is a sex worker who won’t discriminate against them … Others are looking for someone who has already had some experience working with someone with a disability so that the client doesn’t have to train the worker during the session.
“When it comes to the actual session, I always like to be clear on how consent will be determined. For some people who are non-verbal, that might require setting up a means of acknowledging how yes and no are going to be expressed, before we even get to the bedroom.”
McReynolds now organises her sessions by herself. “I make a booking directly with the escort and to see if they are available around the time that I want to see them,” says McReynolds.
She asks for the “full service” and sees the same sex worker each time. Having some sessions funded by the NDIS would make a big difference to her life. “[It] causes us to get frustrated because we can’t release ourselves,” she says. “… everybody else we know is having sex.”
‘Community expectations’
Jordon Steele-John, a Greens senator who lives with cerebral palsy, accuses the government of adopting a “broad, nebulous ideas of community expectations”.
“It is nobody else’s business,” he says. “If a disabled person wants to put an aspect of sexual expression into their plan, that they need the services of a sex worker to achieve that, and that is approved by the administrative processes of the NDIS, then that is it.”
He also argues that the “desexualisation of disabled people is a key factor in a lot of the abuse situations we end up in”. “We are not given access to information or support because it isn’t believed that we are sexual beings,” he says.
Robert, who declined to comment, was categorical last week, saying: “The current position continues to be that the NDIS does not cover sexual services, sexual therapy or sex workers in a participant’s NDIS plan.
“These services are not in line with community expectations of what are reasonable and necessary supports.”
The agency won’t be drawn on the question of community expectations. “This was a decision taken by the NDIA, as is appropriate,” a spokeswoman says.
“It is important to note the specific question in the case was whether the requested support (funding for a sex worker) was reasonable and necessary, which is the test under the Act. Applying the criteria in the Act, the agency found that sex worker support was not reasonable and necessary.”
“This continues to be the current position under the NDIS.”
In Germany, the idea was floated in 2013, and then again in 2017. One disability advocate, Matthias Vernaldi, was concerned it would “strengthen public perception of disabled people being some type of imperfect creatures and just expand again the once believed, conquered therapisation of the intimate spheres of disabled people”.
Wilde supports NDIS funding for the sexual services, but she acknowledges why there might be some concerns. “[Costs] can be quite varied,” she says. “I charge $330 for the hour. But you’ve got some bills that go six, seven hundred dollars … whenever it’s government funding … I guess there’s an element of that.”
Things changed publicly in 2017. In response to a Daily Telegraph story that made reference to “unconventional” supports offered by the scheme, but made no mention of sexual services, the NDIA issued a statement saying it did not fund “sexual services, sexual therapy or sex workers in a participant’s NDIS plan”.
Where before there was no policy, now there was a blanket ban.
Bowden and Isbister both claim the disability community has quietly been able to use taxpayers’ money to visit a sex worker for quite a while.
They claim people had used state disability funding to pay for the services and, despite the NDIS’s claims, the money had actually been carried over from state plans in the early days of the new scheme.
“We could appreciate that the agency and those individuals were going about that in a quiet way,” Bowden says. “Most people aren’t wanting the supports they might require to have sex or reach orgasm made very public.”
Eventually, Bowden says the agency began rejecting claims when people tried to update their plans to include sex work services. Those who were self-managing their plans were also told they could no longer access the services.
“I think some of the more conservative members of the ministry and of the agency still are very hung up,” Isbister says. “I think the NDIA are way out of step with community expectations. The community does not expect people with disability to live the life of a nun.”
He says in motor accident insurance cases, courts have included access to sex worker services in settlements.
Bowden adds: “If you are unable to reach your own genitals because of the type of disability or impairment you have, then I think the community would expect a person would have some assistance to have sexual release.
“Whether it’s to be positioned to have sex with their husband or wife or partner … these services are only provided by sex workers, they are not provided by sex therapists or anyone else.”
McReynolds is also confident they can win the fight. “The community feels the same as me,” she says.
And to the critics, she adds: “They don’t really know what it is like having a disability [and not] having sex.”
Actor Daniel Radcliffe discovers that the Hatton Garden robbery of his great-grandfather’s jewellery business was far more dark and dramatic than he ever imagined, while an unseen cache of his great-great-uncle’s letters reveals a heart-wrenching First World War love story.
Can you be lucky if you get something you deserve? I felt lucky last week as I read the letter informing me I’d been awarded personal independence payments (Pip). Like a couple of million other disabled people, for years I’d received Pip’s predecessor, disability living allowance, without any problems in order to pay for the extra costs of my disability – but it was recently reassessed in the name of “welfare reform”.
It’s the oddest of things, “welfare reform”. You sit there, opposite a stranger, asked to detail the sort of intimacies you’d be reluctant to share with a lifelong friend. “Are there parts of your body you can’t reach to wash? Which ones?” “How do you put your bra on?” You wonder why exactly such lines of questioning are necessary, or how the tens of pages you filled out for hours beforehand weren’t enough, and then explain, as politely as you can, the extra painkillers it took in order to get dressed for this assessment this morning.
The assessor tries – because she is polite and you are lucky she is kind – complimenting you on your nice home, even though you both know you’d like her to leave it as soon as possible. You also know that you are “lucky” that you were granted permission to be assessed at home; you could just as easily have been forced to travel miles, exhausted, or sent in your wheelchair to a centre with steps and no ramp. You consider how exactly the employee of a private company is in a better place to judge your health needs than your own consultant who has provided evidence, and whether putting foundation on was a mistake in case you look “too well”.
Throughout it all, there sits the elephant in the room: that this is all pointless. That by virtue of genetics, it is scientifically impossible that you have been cured since your last assessment. And yet you sit there, going through the motions, because non-disabled cabinet ministers told the rightwing media that people like you shouldn’t be “allowed to fester” on benefits.
Pip is, of course, just one part of sweeping disability benefit “reform” in recent years, in which “reform” has become a euphemism for savage cuts. This week research by the Disability Benefits Consortium (DBC), a coalition of more than 80 UK disability organisations, showed changes to the social security system over the past 10 years have left disabled adults four times worse off financially than those without a disability. It has long been understood that disabled people have borne the brunt of austerity, but this is the first time a comprehensive study has laid it bare.
The details of the report paint a picture of the government running a cruel game: the more health problems you have, the more you actually lose out – people with six or more disabilities are losing more than £2,100 each year on average, compared with someone with one disability, who loses £700 – while disabled children have been targeted too. Households with one disabled adult and one disabled child have had their support cut most, with average losses of more than £4,300 a year. This is a nation of distorted priorities, in which prospective prime ministers flex tax cuts for the healthy and wealthy, and the already poor and sick are pushed further into hardship.
The DBC study details the way in which many disabled and chronically ill people put through “reforms” feel “highly stressed, distrusted, and constantly challenged”. One woman with multiple sclerosis told the researchers that she had had her Pip cut and was about to lose the Motability car she needed to get to work. The anguish brought on a severe MS relapse. She’s now lost all feeling in her left leg.
I was “lucky”. Unlike some, I didn’t have to skip meals because my disability benefits had been removed. I wasn’t forced to go through a lengthy and exhausting appeal. I wasn’t, like the late Stephen Smith, forced to discharge myself from hospital in order to attend the tribunal to fight my case. But it is surely a sign of a broken system when disabled people relying on Britain’s safety net are grateful if it catches them without too much pain.
In this way, “welfare reform” reinforces the narrative drilled into members of marginalised groups – that while for many the state is a vehicle to support them in times of need, for others it offers little more than abuse and disbelief.
The DBC report offers conclusive proof of what disabled people have long known: benefit cuts are unjust, harmful, and widespread. Ministers may one day begin to care – if we are lucky.
This is a guest post by Geek ‘n’ Proud who Tweets @geeknproud42.
Do my wheels look big in this?
Why am I asking this? To clarify, I am not talking about whether your wheelchair, if you use one, has a good fashion sense. However, I am going to discuss a topic which I hope you will find equally, if not more interesting, and that is the potential frustrations that many people with disabilities can face, with respect to sexual and romantic relationships. I speak from the perspective of mainly my personal experiences, and hopefully I will be able to draw some conclusions from it, which may be useful to you.
So, before we start with my story, let’s remember that, although I can tell you what worked for me, there is not one magic bullet that will ensure that everyone who has a disability will have a happy and fulfilled personal life. Please also remember, that you may have a different perspective on the situations that I will describe, but it is important to know that no one has walked in another person’s shoes and hence we should all respect each other’s stories.
As I was writing this, I realised that my experiences had some recurring themes. I started off as a young teenager, thinking I was really into quiet geeky guys. As you will see, I have gone the long way round the houses to find I am still into quiet geeky guys, but other people too. But no spoilers. I have also noticed that I have had to consider paths that I might not have thought about, if I wasn’t negotiating this situation with a disability. I also think, that one of the main things I have learnt about this subject, is that it is all down to attitudes. I think this is particular to the combination of relationships and disability, compared to disability and other areas of life. It is certainly true that, if all entrances to a building have steps, then the building is not accessible to someone using a wheelchair, irrespective of the attitudes of the people inside and outside of the building. I also think that I can point to a lot of examples of different minority groups welcoming each other, but again no spoilers.
Let’s go back to the beginning, well almost. Back to my teenage years, at least. As a teenager, I felt very worried that my disability would interfere with romantic and sexual relationships. When I met up with friends, I seemed obsessed with asking them “do you think I’ll ever find someone? How do you think I should make that happen?”. Around me, I saw my friends pairing up, and unpairing, and I wanted to be in on the action, but I didn’t see how to make that occur. You have to realize that, until I was 18, I didn’t have full time personal assistants, and my parents helped me out. Now, my parents are absolutely awesome, and they gave me every opportunity possible to live life to the full. But, as we all know, the combination of parents and puberty is a difficult one at the best of times. It’s a kind of a dampener when you turn up to a date with your mum in tow. I feel like every other aspect of my disability was extremely well supported, but the issues surrounding sexuality were something I had to figure out for myself. I would say this is probably unavoidable. After all, who really wants to talk to their parents about how they are going to get up to no good? This situation was also partly my choice. I was, and still am, extremely passionate about science (particularly physics) and it was always my overarching ambition to study physics at university, and go into research. At one point, I had a choice of whether we employed a scribe at weekends, to write down my homework for me, or a personal assistant to help me get out and about. I chose the scribe without question, because I really wanted to get into the best university I could, and I knew I had to study extremely hard. I am not at all saying that I wasn’t also swayed by the fact that my scribe was a teenage boy who I had a bit of a soft spot for. But also, in a way, I used my success in my studies to substitute for my perceived lack of success in relationships. I almost saw doing well at school as an act of rebellion against all the people who assumed I couldn’t do things. I was a bit of a weird kid.
However, my best friend at the time was absolutely convinced that I was some flavour of queer. As it turns out, she did have a point, but I was a bit slow on the uptake in that respect. Being a physics student, I was surrounded by teenage boys and, hence there was always plenty of choice as, like I have already said, I thought geeky guys rocked! If one was in any way friendly towards me I would develop a crush on him in very short order, particularly if he was talking to me about my main passion – physics. This happened frequently, and often in front of my parents, so they came up with the mantra “Geeknproud is boy crazy!” to tease me. Of course, I was such a goody goody two shoes, that if my parents said it, then it must be right. This was despite the fact that at night I thought about naked women, because that’s what all straight teenage girls do, right?
This state of comfortable illusion lasted into my early 20s, by which time I was studying for my undergraduate degree in physics. Then, it happened! I committed the big no-no, that was to develop a serious crush on my personal assistant. You might say that I was trying to copy Stephen Hawking, who married his nurse, but it was simply that we really connected with each other, and I wanted to spend as much time as I could being physically close to her. Moreover, she was the first person who I knew well, who identified as a lesbian, and I was extremely curious about her life experiences. More on her story later, no spoilers, but in case you’re wondering, I didn’t end up dating her. However, obviously I knew I was in a bit of a dodgy situation. I even used to believe that I couldn’t fancy women, because how could I ever have female personal assistants. I naively thought it was some kind of weird boundary that I couldn’t cross. Fortunately, she just laughed it off, and said it was just another example of me getting confused about people who I am very good friends with, which I used to do all the time when I was younger. I actually spent a whole year figuring out if it was just her or women in general. At the start of the next academic year, I finally resolved to bite the bullet, and joined the LGBT group at university, where I was surrounded by lots of other very pretty lesbians. I had an amazing time; it was the social life I was looking for: a group of people to go to bars, clubs, museums, restaurants, cinemas with. I made a lot of strong friendships, but unfortunately no other gossip.
I graduated from my degree at Imperial College London in 2014, and started my PhD in Cambridge the same year. In the following year, my PhD research took me to CERN in Switzerland to conduct experiments there. It was really exciting to be working abroad, but, at the same time, I was very lonely. I was spending the majority of my time with people who I had only recently met, so one thing that really surprised me was how much I craved any kind of physical contact. It wasn’t appropriate to hug any of the people I interacted with while I was there, and apart from my parents and one friend visiting occasionally at weekends, there was no one I knew socially there. Like during my undergraduate years, the LGBT group was the best part of my experience. I got on well with the people and we went to a lot of cool events together. I went over from the UK with a group of about 40 other PhD students who were on the same kind of course, and there was a tendency in that group to go around as a pack and not talk to anyone not from the UK, which I didn’t like. The LGBT group was much smaller and its members were a bit older and much more international, so I found their company more interesting. Due to the loneliness I felt there, on my return I was determined to make my social life more exciting.
When I returned to Cambridge, I started online dating with a vengeance. I had had an OKCupid account for years, but really it was so mild that I only ever got platonic pen pals from it. I’m not saying that it will work for everyone to make their dating profile cheeky, but it seemed to do the job for me. And to be clear by cheeky I don’t mean along the lines of some profiles that only have naked pictures, I just wrote it with a lot more confidence to say what I was looking for. I also found that the internet gave me a lot more freedom, because suddenly I didn’t have to worry about whether someone understood my speech. Of course you have to decide how and when you tell people about your disability and I decided to write about my wheelchair on my profile in a jokey and light-hearted way. Then, as I got talking to someone, at some point I told them more details, partly to protect myself from an unpleasant meeting in public. Again, I found much more acceptance in the LGBT community – it just seemed like an unfortunate trend that the vast majority of unpleasant messages came from heterosexual men. This was on top of never really feeling like sexual attention from men in real life was genuine, and not predatory, combined with my experience of being put in the ‘friend zone’ by nice boys as a teenager. So, I all but ruled out heterosexual men.
In case you’re wondering, the internet dating was successful. I found someone and we had a very happy few months together. She also introduced me to polyamory, so all in all, that first relationship was a very big learning experience in many ways. Even after we went our separate ways, polyamory was an idea that I continued to explore for the next few years, as well as other aspects of the world of dating and relationships. It is only relatively recently, with my current partner, that I have decided that polyamory is not for me, at least in this period of my life.
I will try to pull some sense for you, out of the few years I took, to figure out what kind of relationship I wanted. There were certainly a lot of very fun times, but also more setbacks, rejections and disappointments than I care to mention. But through the bad times I remembered how frustrated I had been as a teenager and how much I had wanted to experience what it was like to have romantic relationships. Certainly, when I was a teenager, I never thought I would have those notorious casual relationships, whatever that means. For me it meant, to give you an example, I got in touch with a fellow PhD student who lived in Brighton. Every few months I would go and visit them, or they would come to me, and then we would spend some of the time cuddled up indoors talking about black holes, sci-fi books and death metal, while other times we would go to Pride events or science debates. In the intervening weeks, we might only chat online a couple of times, but when we were together the connection was just as strong. I think that I always wanted to experience moments like that to prove that I could before I focused my attention on one person. I also found that in some ways my disability might have opened doors for me. At Pride people were always very happy to see I was going out and about despite needing to use a wheelchair. I was also always welcome into trans and non-binary spaces even though I only occasionally identified as non-binary. It’s also true that a lot of my partners in that period identified as trans, I don’t know why this happened in this way, but perhaps we recognised a shared experience in each other. I can’t say for sure.
So that is, more or less, my story. However, to tie up a few loose ends, after my personal assistant stopped working with me, we continued to be close friends. A few years later, she confided in me that she had always had a preference for men, but just happened to only have relationships with women. It took a slight readjustment to think of my initial reference point to LGBT+ culture as being mostly heterosexual. However, in a cool and unexpected turn of events, I ended up introducing her to one of my male friends and they dated for a while. Also, it turns out I did manage to find at least one lovely heterosexual male, and I am happily seeing him now.
Now, let me try to draw out what I think I have learned from the experiences I’ve had. I think the main point is that in the area of sexuality, relationships, and disability, a lot of the potential barriers can be broken down into the attitudes of the people involved and of society as a whole. For example, I experienced a very welcoming attitude from people in more LGBT+ friendly spaces, and a more threatening attitude from people in mainstream spaces. I also found that the validity of me going into trans and non-binary spaces was never questioned, even though, most of the time, I present in quite a feminine way. I wondered if this could have originated from people recognising that I’m also in a minority because I use a wheelchair, and whether someone who presented in a very masculine way, for example, would be questioned more. I have not tested this, so I can’t be sure. Once again, I want to stress that I am not trying to say that all LGBT+ people are accepting to everyone, and all non-LGBT people are not welcoming, because that would be a gross and unfounded generalisation. However, I am just talking about my repeated experiences. It also made a big difference when my attitudes changed. When I put a lot more confidence into online dating, and was convinced I would find someone, I did, whereas when I previously thought it was a long shot, I only got lovely platonic pen-pals. Of course, boiling everything down to attitudes can’t be applied to most issues regarding disability. But this only addresses the interplay between someone’s disability and their relationships – which is fundamentally about the connection between two people, hence attitudes.
I want to just break down some of the frankly ridiculous attitudes that often prevail around people with disabilities, and sex and relationships. Some of the most worrying ones that I have heard are:
People with disabilities can’t have sex
People with disabilities don’t want sex
People with disabilities aren’t sexy
People with disabilities can’t or shouldn’t have children
Patronising attitudes towards people with disabilities dating
People with disabilities only have kinky sex
Let me go through them and talk about where they could come from and why they are just wrong. First up, we might often hear people saying that folk who have disabilities can’t have sex. This is just an inaccurate, gross generalisation. The majority of people who have disabilities can have sex just fine. It may happen in a slightly different way to how it is portrayed in film, or other media, but as we all know, that is fake. It is true that some people with disabilities find it extremely difficult to have sex because they might have issues like pain, decreased mobility, or issues to do with mental health that could get in the way of feeling sexy. However, these people are the minority.
Then we have the myth that people with disabilities don’t want sex. This one originates from the way society often portrays people with disabilities as needing to be cared for, which could make them think of people with disabilities in the same way they think about children. Out of this could originate an idea that people with disabilities aren’t able to make their own choices because they have someone doing it for them, so how can they consent to sex? This is also myth because, at least the way I see it, and most people I’ve met, the role of the assistant is to act as an enabler. Moreover, just because someone has a disability, does nothing to change the fact that they have the same wants, needs, desires and fantasies as everyone else.
Next up, we have the damaging attitude that people with disabilities aren’t sexy. This is purely a product of the bad attitudes of society, about using a wheelchair or having a movement disorder – it’s not seen as sexy. But clearly one needs to look past the disability to the person, whether you are looking at their personality, or their body, or both – it depends what one is trying to get out of the relationship.
Then we have the idea that people with disabilities can’t or shouldn’t have children. This is plainly nonsense because most disabilities aren’t inherited, and also most people with disabilities can have children in the same way that everyone else does. There are some people who could have difficulties, but again, they are a minority.
What’s next, ah yes, patronising attitudes to people with disabilities dating. This is a product of some of the attitudes we’ve already talked about, that people with disabilities aren’t desirable, so if someone chooses to date someone who has a disability, they are doing them some kind of weird favour. I can’t stress enough how wrong this is. But it is all too easy for someone with a disability to pick up this attitude, and have it really damage their confidence.
The last one is particularly weird, and ties into the patronising attitude one: ‘people with disabilities only have kinky sex’. In other words, if you’re considering having sex with someone who has a disability, you are some kind of sexual deviant. Of course, sex with a person with a disability is nothing to do with the person or their body, what planet are these people on??!
Jokes aside, these attitudes can be seriously damaging to the self-confidence of people who have disabilities, however much we tell ourselves they are nonsense. To make matters worse, certainly speaking from experience here, but I know it is also true of many other people, we have to often spend a lot of time thinking about our bodies in the context of disability. For example, at one point when I was a kid, I had to travel to physiotherapy three times a week, decreasing to once a week during my adolescence. But still, when you include the preparation and the travelling to and from the appointment, you still have a significant part of the day where you focus on all the things your body can’t easily do, even if it is in the context of trying to make things better. It can be hard to switch from that, to thinking that you are absolutely gorgeous, and could pull anyone.
So what is the upshot of all of this? Well, certainly I think it is unfortunately fair to say that most people who have disabilities, at some point lack confidence in the world of dating and relationships. On top of this, the situation isn’t helped at all by the lack of representation of people with disabilities dating, in the media, or even people with disabilities doing anything. This not only does not provide people with positive reinforcement, that the character in the film got a partner, therefore I can, but it also does nothing to relieve the bad and unfounded attitudes that people with disabilities aren’t date-able. It can also be very difficult and embarrassing to know where to turn. As a teenager, I felt bad about chewing my friends’ ears off about how I was going to accomplish the seemingly impossible. And I don’t think I was alone.
But, what I’m trying to say is, this problem is easily fixable. All we have to do is keep challenging these bad attitudes, wherever they come from, and always remember how sexy we all are!
Dylan Hughes and Amelie Barker, both 16, were “really chuffed” to hear the news at Monmouth Comprehensive’s end-of year dance in Ross-on-Wye on Sunday.
Their parents say they met when they were three years old and have plans to get married in the future.
“She was really, really pleased – she was beaming,” Amelie’s mum said.
Despite knowing each other most of their lives, their romantic relationship only started about six months ago.
“As teenagers do, they start looking at each other with different eyes and added interest,” explained Amelie’s mum, Katharina.
“It has very much been driven by the two of them – they told us they were boyfriend and girlfriend and that they want to get married eventually. It’s all been planned out.”
Dylan has represented Great Britain at the Down’s syndrome Swimming World Championships in Canada, and is preparing to compete in the European Championships in Sardinia.
He is “sports mad” and either wants to be a PE teacher or play rugby for Wales, his mum Victoria said.
Amelie will be starting a course in childcare at Gwent College in Newport in September.
“She very much likes to work with children – she has a real knack for it,” Katharina added.
Katharina and Victoria met while Dylan and Amelie were very young and set up 21 Plus, a charity which supports families with children with Down’s syndrome, about 10 years ago.
Dylan and Amelie may not see as much of each other after they finish school, but both families have committed to helping them see as much of each other as possible.
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It is one of the most fascinating and consoling features of the life of Sir Winston Churchill that, for all his giant strengths of courage and resilience, he was also prone to bouts of depression. He called it his “Black Dog”. And there was only one means by which he really succeeded in chasing that Black Dog away. It certainly wasn’t alcohol. It was the same therapy that lifts the spirits of hundreds of millions if not billions of people around the world – and that cure is work.
In Churchill’s case that meant the almost superhuman production of books, speeches and articles. He wrote more words than Dickens and Shakespeare combined – and that is before we have even considered his epic memoranda, or the industriousness of his oil painting.
It was with work that he pitchforked off his depression; and what was true for Churchill is basically true for all of us: that to a very large extent we derive our self-esteem from what we do. It is often from our jobs – from being engrossed in our daily tasks – that we get that all-important sense of satisfaction.
Yes, it is work that sometimes stresses us out, and work that causes anxiety; but it is also work that can absorb us and take us out of ourselves until the clouds have gone.
If work is the cause, it is also part of the cure. So if anyone faces prolonged stress or depression, or mental illness of any kind, it will in general be far better if they can get the treatment they need without necessarily being forced to leave their job, and thereby giving up not only their livelihood but also that vital psychological support.
This country is making huge progress in tackling and demystifying the problems of mental health. Taboos are being lifted. Discussions are being held with a frankness that would not have been possible 20 or 30 years ago.
We have far greater understanding and confidence about what can be done. We know that people can be helped, that therapies exist, and that they are effective, that seemingly invincible darkness can be dispelled and that people’s lives can be turned around. We grasp the crucial importance of sport, and physical exercise.
If you want some good news – and you know I believe in the good news – the rate of male suicide is now down to 15 per 100,000, the lowest since records began in 1981. Female suicides are down to about five per 100,000. Better mental health care is saving lives; but every suicide is still a tragedy. No statistic is any consolation to the bereaved, and we have far more to do.
It is only now, as we gain in maturity and understanding of the issue, that we can see the full economic and social cost of the psychological burdens carried by the workforce – where one adult in six will suffer from some kind of mental ill health in the next week. Of all the working days lost to ill health in this country, 57 per cent are due to stress, depression or anxiety.
According to a recent study conducted by the John Lewis Partnership, mental-health problems and other stress-related conditions are combining to reduce national productivity by £84 billion per year. When people are obliged through stress to leave their jobs, the burden falls on our hard-pressed mental health services; to say nothing of the cost in welfare payments, and the destabilising effect that unemployment has on families.
And as soon as someone leaves their job, and forsakes that self-defining sense of purpose, they are at risk of entering a downward spiral of depression.
Then there are the many employees who stay in their jobs, but who are prevented by stress from performing to the best of their abilities – the so-called “presenteeism” phenomenon.
We only heard about this ‘column’ when we came across this Tweet online:
Thank you Poorna Bell for phrasing the thoughts of so many so well!
Disabled claimants have had their benefits cut by an average of £1,200 a year because of a series of changes introduced since 2008, a report by the Disability Benefits Consortium released today claims. Households with a disabled adult and a disabled child have lost an average of £4,300.
The report, ‘Has welfare become unfair – the impact of changes on disabled people’ argues that whilst most claimants have lost out on £300 a year in benefits, the effects on disabled claimants has been much more dramatic.
According to the researchers:
“The more disabilities you have the more you lose out, for example someone who has six or more disabilities loses over £2,100 each year on average, whereas someone with one disability loses around £700 each year.”
“Households with one disabled adult and one disabled child lose out the most, with average losses of over £4,300 per year.”
The cuts have come about because of a whole raft of changes introduced over the last decade, including:
Move from incapacity benefit to employment and support allowance
Time-limiting of contributory ESA
Abolition of work-related activity group for new ESA claims
Move from disability living allowance to personal independence payment
Benefit freeze
Rollout of universal credit
The report estimates that the cuts to benefits will amount to £38 billlion by 2022-23.
Although households with at least one disabled person make up less than a third of the population they will have suffered almost two thirds of the cuts.
The reports authors argue that:
“These changes have had a devastating impact on disabled people. Financial security for the majority of disabled people has all but vanished. Disabled people have been left living in poverty and isolation as a result.”
“This has created an environment that is difficult and unforgiving for disabled people. Those with the
greatest needs, who are most vulnerable and with the fewest financial and social resources, are left to navigate a complex, stressful process. It’s a process that ultimately leaves them with their health worse and with less financial support.”
The report calls for a long list of changes to the current system, including:
Ending the benefit freeze
Restoring ESA/UC work-related activity component
Introducing a disability element to Universal Credit to replace the disability premiums that have been cut from the system.
Removing the benefit cap for everyone who receives a disability-related benefit
The Scottish government has begun consulting on how best to provide free advocacy support for disabled claimants beginning in the summer of 2020.
In yet another sign that claimants in Scotland are to be treated with a degree of dignity and respect that is almost entirely absent south of the border, the consultation will look at how to ensure that disabled claimants receive the highest standards of service when applying for Social Security Scotland benefits.
Social Security Secretary Shirley-Anne Somerville said:
“Our social security service provides dignity, fairness and respect. Advocacy support for those applying for Scottish benefits is an integral part of delivering those principles.
“To protect disabled applicants’ rights and ensure everyone is fully involved in the decisions that affect them, advocacy support will be provided where necessary.
“To make sure this support is of the same high quality across Scotland, the consultation launched today is asking for people’s views on draft service standards. The responses will ensure services meet the needs of people.
“I believe this is important additional help we can give that’s not currently available in the Department for Work and Pensions administered system.”
The Belfast man has taken the decision “due to various health/mental reasons needed to compete at the top level”.
Swail, 49, finished the 2018/19 season 89th in the world rankings after a 10-1 defeat by Joe O’Connor in the World Championship qualifiers.
“I’ve had an unbelievable time and a successful career on the snooker circuit,” said Swail on Twitter.
“Retirement it is and I will now enjoy and concentrate on my coaching/practice sessions and play in a few World Senior and amateur events next season.
“Many thanks for all the support over the years.”
Swail, who is partially deaf, has been suffering from tinnitus.
Having started his professional career in 1991, he reached the semi-finals of the World Championships in 2000 and 2001 and made the Welsh Open final in 2009, where he was beaten by Ali Carter.
The Northern Irishman dropped off the professional tour in 2017 but returned having obtained a new tour card through qualifying school.
Following his defeat in the World Championship qualifiers in April, Swail said his ill health had reached a stage where he could no longer prioritise his career.
“I really do play it down, I don’t talk about it because I don’t want to use it as an excuse but it does affect you,” said Swail, whose highest world ranking was 10th at the end of the 2001/2 season.
“It is frustrating because I love the game and I feel as if I have got a lot to offer, but I have got to put myself first.”
Claimants are suffering months of hardship because the DWP falsely state that they have not received their claim form, Bob Doris, convener of Holyrood’s social security committee has alleged. Doris has written to Work and Pension secretary Amber Rudd, demanding urgent action.
The problem was brought to the attention of Doris by Glasgow North West Citizens Advice, according to the Daily Record. Staff there have helped claimants complete forms and sent them off in prepaid DWP envelopes, only to be told that they were not received.
In some cases the DWP suddenly “find” the form, which they then claim has only just arrived, after repeated phone calls and increasing pressure from the claimant. But this process can take anywhere from a few weeks to three months.
Doris told Rudd: “People can be waiting over 26 weeks for new claims and a mandatory reconsideration, then up to six months for appeal.
“Essentially vulnerable constituents are often left waiting a year for money they are entitled to, and have to battle a work backlog, an imperfect assessment process and the risk of forms going missing.”
The problem is undoubtedly connected the fact that DWP have cut staff by a massive 21% – a total of 19,189 job losses – since 2013, the Independent has revealed.
This means that at the same time as the department has been rolling out two massively complex changes to the system, the switch from DLA to PIP and the move from legacy benefits to universal credit, it has been cutting staff at a rate that would have made even their ordinary workload unsustainable.
No wonder then, that staff have resorted to losing claim packs.
Two million low-paid workers may for the first time be entitled to statutory sick pay under proposals that the government hopes will also encourage more people with disabilities and long-term conditions back into work.
About 100,000 people every year fall out of work completely after a sickness absence, according to the Department for Work and Pensions and Department of Health and Social Care, which are jointly putting forward the proposals for consultation. Nearly half (44%) of those who are off work because of illness for a year do not return to the workplace.
The proposals include money for small businesses in the form of a sick pay rebate, so that they can help people with disabilities and those with long-term conditions get back to work when they are ready.
“I want Britain to be an environment where disabled people and those with health conditions can thrive, not just survive – not only in work but every area of their lives,” said the work and pensions secretary, Amber Rudd.
“With three in five employers facing challenges when supporting employees to return to work, it’s time that we took a closer look at how businesses can retain staff. Good work is good for our mental and physical health, and by working closely with employers we can help prevent the loss of talent when people unnecessarily leave the workplace.”
Long-term chronic conditions, from type 2 diabetes to heart problems, are on the rise as people live longer. Obesity and excess weight are partly responsible for a steady increase in chronic ill health. People with mental health conditions also frequently struggle for support at work. There are 12.7 million people of working age in the UK with a long-term health condition.
“These people are at greater risk of falling out of work, and once people fall out of work the barriers to returning are high. But with the right support and adjustments in place, many could remain in employment,” said a DWP spokesperson.
The lowest paid people in Britain are not currently eligible for sickness benefit. Statutory sickness pay is only for those who earn more than £118 a week. Two million people, most of whom will be part-time workers, earn less than that.
The consultation will seek views on the level and duration of statutory sick pay, which risks being a disincentive to returning, says the DWP.
“If someone currently earning below the lower earnings limit were given the full rate of SSP, it is likely that this would be above what their weekly wage is. If they can get the same amount or more from staying off work then this removes the incentive for employees to return to work. It is a balance between supporting this group when they are off work sick while also providing an incentive for them to return to work,” said the spokesperson.
The proposals will include statutory guidance to employers to take “early, proportionate and reasonable steps to support an employee to return to work, before dismissing them on health grounds”. Employees will have a right to request modifications to the workplace on health grounds. Employees will be encouraged to raise issues, and employers to accommodate them where possible.
“Too many still face challenges returning to work after sick leave. We need to remove the barriers that stop people with disabilities or health conditions from reaching their full potential – these steps will help us achieve that,” said the health secretary, Matt Hancock.
“Businesses will also benefit from being able to retain talent and build workplaces that support the physical and mental health needs of their employees.”
Matthew Fell, the CBI’s chief UK policy director, said: “Managing sickness absence effectively and reducing it through proactive health and wellbeing initiatives and policies makes good business sense. Where this helps disabled people to contribute their best at work it can also be an important part of employers’ diversity and inclusion efforts.
“Adding greater flexibility to statutory sick pay so it supports mental as well as physical health makes sense, and reflects the reality that one in four people will experience such an illness each year.”
The play, Tuesday, was tweaked after being told by Manchester International Festival it could not cast a non-disabled actor in a disabled role.
Studio Orka said the dispute showed “cultural differences” between the UK and their native Belgium.
VisAble boss Louise Dyson, however, declared they are “behind the times.”
Ms Dyson, who was awarded an MBE for founding the VisAble agency more than 20 years ago, told the BBC: “To not even attempt to meet disabled actors and to instead rewrite the role, shows a paucity of imagination and total insensitivity to the many highly experienced lead role artists we have working regularly at the National Theatre and every other leading UK theatre.
“Belgium is way behind the times! Our artists are cast members in major television series and these days we get calls from Hollywood too, for big roles in features.”
She added: “So there is no excuse for this and they are missing out on great people while annoying or disappointing many more.”
The production premiered at MIF this week after the festival were satisfied with the producers’ compromise to re-write the story of the disabled character Stella, who had been in a wheelchair.
‘Huge cultural differences’
Martine Decroos, Studio ORKA artistic director, told the BBC on Thursday evening they were happy to make the compromise with MIF to enable the play to premiere at the event this week.
He put the issue down to the “huge cultural differences between the UK and Flanders” regarding attitudes towards disabled roles and admitted the conversations had “opened our eyes”.
“After reading and hearing more about it we realised that the issue is very delicate and that people in the UK have very strong opinions on it,” said Mr Decroos.
“Studio ORKA wants to express that we have respect for these points of view and we don’t want to minimize the problem at all. Essentially the play is about the power of friendship and the development of self-esteem in order to deal with setbacks in life.”
He added: “We have the feeling that the compromise has been made in the right way with lots of respect both for our artistic freedom and for the approach of the UK.
“The most interesting part of it is, that after all, it opened our eyes and that we’ve been talking about it in a very honest and artistic way.”
Ms Dyson, whose company specialise in creating mainstream professional opportunities for actors, presenters and models with disabilities, stressed the importance of theatre company’s being inclusive and making people with disabilities visible in such roles, in order to help change “the public mindset” towards disability.
MIF festival boss John McGrath said its policy was to ensure disabled actors were given priority for disabled roles and that producers should “create authentic representation”.
In January, US star Bryan Cranston defended playing a disabled character in his film, The Upside, saying his casting as a man with quadriplegia was “a business decision.”
“As actors we’re asked to play other people,” said the Breaking Bad star.
He added: “If I, as a straight, older person, and I’m wealthy, I’m very fortunate, does that mean I can’t play a person who is not wealthy, does that mean I can’t play a homosexual?”
Jake Gyllenhaal and Dwayne Johnson are among the Hollywood stars who have faced criticism for playing disabled characters.
Russian attacks on American democracy in 2016, carried out over the internet, have triggered a national debate over the use of technology in the United States’ upcoming 2020 elections.
But some of the best ways to beef up the security of the voting process and fight off future cyber-attacks could have an unintended consequence: limiting access to the vote for people with disabilities.
Voting on hand-marked paper ballots – which by definition can’t be hacked – combined with robust audits of how the elections were carried out and how the votes were counted is widely seen as the most secure way to run an election.
Cybersecurity experts want hand-marked paper ballot systems, but disability rights advocates want voting machines to be used for all voters, as they are best for disabled access.
The two groups have been butting heads over this since the Help America Vote Act (Hava) of 2002, which gave states $3.9bn to buy new voting technology and required every polling place have at least one accessible voting machine. Rather than operate parallel systems – and since it was on the federal dime – many county and state governments decided to purchase voting machines to be used by all voters – something now seen as a security weakness.
Noel Runyan is one of the few people who sits at the crossroads of this debate. He has 50 years of experience designing accessible systems and is both a computer scientist and disabled. He was dragged into this debate, he said, because there were so few other people who had a stake in both fields.
Voting machines for all is clearly not the right position, Runyan said. But neither is the universal requirement for hand-marked paper ballots.
“The [Americans with Disabilities Act], Hava and decency require that we allow disabled people to vote and have accessible voting systems,” Runyan said.
Yet Runyan also believes the voting machines on the market today are “garbage”. They neither provide any real sense of security against physical or cyber-attacks that could alter an election, nor do they have good user interfaces for voters regardless of disability status.
For disability rights advocates like Jim Dickson, who helped craft Hava and now works with the National Council on Independent Living to expand voting rights for people with disabilities, the need for accessibility outweighs the concern over security.
“If poll workers know that everybody is going to have to use the machine, they’re going to know how to operate it,” Dickson said. “They’re going to be familiar with it. It’s not going to be a strange thing over there in the corner.”
Election security advocates like Susan Greenhalgh, policy director for the National Election Defense Coalition, agree that accessibility is a necessary part of elections, though not at the cost of security.
More important than universal use of voting machines, Greenhalgh said, is making more polling places accessible to people with motor impairments. Once voters are inside, voting machines should be used sparingly and only for those who need them.
“There needs to be ways to provide reasonable accommodations using technology to the best of our ability today to make voting accessible to all voters and not introduce the opportunity for a national security crisis in our elections system,” Greenhalgh said.
“It’s not a game. This is a really serious problem we’re facing for the security of our elections systems,” she added.
The issue is rapidly coming to a head. Old voting systems are being decertified across the country due to widespread security concerns, forcing elections officials to make a decision on which system to use next. Runyan advises against the urge to let accessibility or security needs push the buying of another round of bad systems. Better voting technology is, in theory, only a few years down the road, but the upcoming 2020 presidential election makes long-term thinking hard to come by.
“Don’t buy crummy machines. Wait, if you can. Lease, don’t buy, if you can,” Runyan said.
Voters want secure elections in 2020, and only moderate progress is being made at state and local levels, while Congress is deadlocked over elections security legislation. At the same time, voters with disabilities want to preserve and expand their access to the vote, a battle they have been fighting since at least the 1940s.
It looks like an unsolvable dilemma: American elections will neither be fully secure nor fully accessible by 2020.
But the debate over security versus accessibility presents a false dichotomy, according to Eddie Perez, the global director of technology development at the Open Source Election Technology Institute, a Silicon Valley not-for-profit working to increase the security and integrity of election technology. He believes a system can be worked out that pleases both sides.
“You need to add in all of the variables including cost, operations, everything associated with implementations in all of their complexity, and only by looking at all of the tradeoffs in voting technology are we going to come to a reasonable assessment of which looks like a more or less optimal system,” Perez said.
Both Runyan and Perez also concluded that the best answer, for now, is compromise. One way would be to increase the number of required disability-accessible voting machines per precinct and allow anyone the option of voting on them – while still using hand-marked paper ballots for a majority of voters.
But until the security and disability rights groups can agree on basic priorities, both are likely to remain unsatisfied with an election system that fails to meet either party’s needs – for elections in 2020 and beyond.
A video of the arrest in Tower Hamlets, east London, which was shared on social media, prompted accusations of police “heavy-handedness”.
Younass Dentahar, 38, claims officers used “unnecessary force” after repeatedly asking him to move his car.
The Independent Office for Police Conduct (IOPC) has launched an investigation.
Footage of the incident, which was caught on body-worn video, shows Met Police officers trying to handcuff the man as he struggled to escape.
A woman can be heard screaming “he’s dying” and “he can’t breathe”.
Later, the man appears to be having a seizure as officers continue to restrain him.
Mr Dentahar was arrested on suspicion of obstruction of the highway, assaulting police and resisting arrest following an incident in Abbott Road, Tower Hamlets on Tuesday,
He has been released while inquiries continue.
‘No reason’
Mr Dentahar told the BBC he explained to police that he could park on a single yellow line in the area after 17:30 BST and that his child had a disability.
But after arguing, he claimed he was set upon by three officers,
“The police treated me really bad and humiliated me in front of my children. They handcuffed me for no reason and didn’t explain anything,” he said.
“I used to trust the police but I don’t think they did their job right.”
“I have a cut on my head where they hit me with handcuffs. There was three of them on top of me and I stopped breathing.”
The Met previously said Mr Dentahar was asked to produce his driving licence or move his vehicle, then given a “five stage warning”, before being arrested, which he then resisted.
It later said a referral was made to the IOPC which had now declared it an independent investigation.
During a Home Affairs Select Committee hearing on Wednesday, chairwoman Yvette Cooper called the footage “extremely disturbing” and urged Met Commissioner Cressida Dick to “look closely” at referring the case to the IOPC.
Belgian company Studio Orka’s show Tuesday premiered at the Manchester International Festival (MIF) this week.
Festival boss John McGrath said its policy was to ensure disabled actors were given priority for disabled roles.
He told The Stage that the event requires producers to “create authentic representation”.
He said: “As co-commissioners, when we became aware in a run-through in Belgium that a disabled character in Tuesday would be played by a non-disabled actor, we asked for the part to be recast as it is against MIF’s policies for a non-disabled actor to play the role of a disabled person.
“Studio Orka, whose work is devised with its actors, felt this would not be possible and suggested the character be changed to someone who has a serious injury and makes a full recovery over time.”
He added: “While we felt this wasn’t ideal, we agreed to this change to ensure that the show, of which we are in general very proud and which has many wonderful elements – including the involvement of a large community cast – could go ahead.”
The freshly-tweaked production runs at Saint Augustine’s Church in Pendlebury until 21 July.
The work and pensions secretary has announced a review of the benefits system for terminally ill claimants, in a challenge to the next prime minister to listen to demands for reform.
Amber Rudd, who is at risk of being reshuffled out of her cabinet job, laid down a marker on Thursday with the promise of a “fresh and honest evaluation” of the way the system supports terminally ill people.
Citing her own experiences, Rudd suggested there should be reform of the current process for those nearing the ends of their lives, whose benefits are subject to special rules for terminal illness (SRTI), which have come under heavy criticism from charities.
The rules mean that if a person is living with a terminal illness they can have their benefit claim fast-tracked and paid at an enhanced rate, but many charities, including Marie Curie, have campaigned for claimants not to have to prove that they have six months or less to live.
Rudd, whose ex-husband AA Gill died in 2016, said: “Having a life-limiting illness or severe condition can cause unimaginable suffering from the patient and for their loved ones. Having seen it in my own family I know that the last thing you need is additional financial pressures or unnecessary assessments.
“So that’s why today I am beginning work on a fresh and honest evaluation of our benefits system so that I can be sure that people who are nearing the end of their life get the best possible support.
“I hope that this comprehensive evaluation of how we treat those with severe conditions and terminal illnesses will help ensure these vulnerable people get the support they need from our benefits system.”
The system has been heavily criticised by charities for denying benefits in some cases to people who have died shortly afterwards and asking insensitive questions such as to name a date when they expect to die.
Announcing the review, Rudd’s department said the rules were often seen as favouring those living with cancer when other illnesses can also limit life. She said she wanted to look again to make sure that these processes were working effectively and to see if more could be done to improve engagement with the department for claimants living with the most severe conditions.
The review will involve three strands of research, including hearing from claimants and charities about their experiences, consideration of international evidence and an analysis of current performance. Rudd will also seek senior medical input to help shape the evaluation and review the evidence gathered.
About 500,000 people die in England each year, and there are now many more people who are living with severe or progressive health conditions.
Responding to the review, Matthew Reed, the chief executive of Marie Curie, said it was welcome but that the Department for Work and Pensions had not made it clear that a claimant could only have their benefit fast-tracked if it had been determined they had six months or less to live.
He said: “The solution is a very simple one. It is one that the Scottish government has already taken onboard in a new benefits law: that fast, easy access to benefits should be available to everyone a clinician says is terminally ill. People should not have to wait until a clinician thinks they only have six months left to live.
“The review must be focused and quick and the government in turn must act at pace when the review is concluded. Time is crucial for dying people. Every day 10 people die while waiting for the benefits they need.”
Top 31 UK airports ranked on accessibility for disabled passengers
14 airports rated as ‘very good’
16 airports rated as ‘good’
Five airports have improved their ratings
Four airports have had their classification lowered – but remain at ‘good’ levels
No airports classified as ‘poor’ for the first time since reporting began
The UK Civil Aviation Authority has published its fourth annual report on the disability access of the UK’s largest airports.
The accessibility framework is a world-first and is driving improvements in performance to help improve accessibility across UK airports.
In total, there were a record number of 3.7 million requests for assistance at UK airports in the latest year – a rise of over 80 per cent since 2010.
The Civil Aviation Authority’s accessibility report reveals that 14 airports have been rated ‘very good’. A further 16 airports were rated ‘good’.
Four airports that were classified as ‘very good’ last year received ‘good’ ratings this year, while Manchester Airport was classified as ‘needing improvement’ – although this was an improved rating from ‘poor’ in the previous two years.
However, the Civil Aviation Authority expects Manchester Airport to take immediate action to reverse a recent decline in performance since the end of this reporting year in time for the next accessibility reviews. We have received assurances from the airport that it has plans in place to address this issue and we will be closely monitoring the implementation of these plans and their impact on performance.
For the first time since the framework’s introduction in 2016, no airports were classified as ‘poor’.
To achieve a ‘very good’ classification, airports most provide high quality support on the day of travel as well as keeping in regular contact and consultation with its users.
The report highlights room for improvement, with research showing that nearly a quarter of disabled and less mobile passengers said they requested assistance because the airport environment was becoming more difficult to navigate.
The Civil Aviation Authority will work closely with airports to improve accessibility for disabled passengers.
As part of this drive for improvements, this will be the last year that the accessibility framework will use the current criteria. Since April this year, airports have been assessed using stricter targets, to improve the passenger experience and create a more seamless journey. Airports will need to further improve in order to retain or improve their classifications going forward.
Paul Smith, Consumers and Markets Director at the UK Civil Aviation Authority, said:
“These results show significant improvements to the experience many disabled passengers faced before our reporting began. We hope this will help passengers to feel confident and empowered to travel from UK airports.
“While it is good to see the general improvements, airports will need to continue to work hard to improve, so that they are able to meet the more demanding performance standards that we have now introduced. Where we see examples of bad practice, we will not hesitate to hold airports to account and take the necessary action.”
The UK Civil Aviation Authority’s accessibility report covered a 12-month reporting period of 1 April 2018 – 31 March 2019.
14 airports received ‘Very Good’ status: Aberdeen, Belfast City, City of Derry, Cornwall Newquay, Doncaster Sheffield, Edinburgh, Exeter, Glasgow, Glasgow Prestwick, Humberside, Kirkwall, Norwich, Southampton, Sumburgh.
16 airports received ‘Good’ status: Belfast International, Birmingham, Bournemouth, Bristol, Cardiff, East Midlands, Inverness, Leeds Bradford, Liverpool, London City, London Gatwick, London Heathrow, London Luton, London Southend, London Stansted, Newcastle.
1 airport received ‘Needs Improvement’ status: Manchester
As a music journalist, it is rare to hear a sound that is totally unrecognisable – but at a gig hosted by the Augmented Instruments Laboratory (AIL) at the Iklectik near London’s South Bank, this is what happens. The event is showcasing new musical instruments designed by researchers at Queen Mary University of London. On stage is Robyn Steward who, after a rousing introduction, gives a performance on her own augmented instrument: a trumpet wired through a series of pedals, producing distorted and delayed sounds I’ve never heard before. But perhaps I shouldn’t be surprised: Steward’s trumpet is a new invention, created out of necessity in a market where barely any of the instruments available are suited to her abilities. Enabled by developments in technology, Steward is one of a small but growing new generation of women breaking down barriers of gender and ability in music.
Steward has 10 disabilities, including autism and cerebral palsy. She plays tonight in the headline slot, in good company. Also performing is Lia Mice, PhD student and composer of avant-garde electroid pop music, tonight playing the double-headed harp guitar – like a washboard with two guitar heads at one end and 12 strings stretched across it. It follows other Mice creations such as the ChandeLIA (a “hacked chandelier”), the Reeltime (a four-track tape looper with a custom interface), and a one-handed violin, which is operated using a throat microphone to alter the pitch of a bowed string.
Mice was inspired to make the one-handed violin out of frustration with music lessons in schools, where whole classes are taught to play the same instrument (most commonly the violin), often excluding children with disabilities. Instruments designed with disabled musicians in mind are scarce, while those that are available are often prohibitively expensive. However, recent technological advances are enabling more and more designers to innovate in accessible music tech, at lower costs.
One key development is Bela, an embedded computing platform created by the AIL. No bigger than a matchbox, Bela is an audio processor that turns code into sound. It’s been used in the one-handed violin, the Sound Experiment Station and the AIL’s cardboard lightsabers. Both its software and hardware are open-source, meaning anyone can see how it’s made to incorporate it into their own instrument designs. This approach has enabled many at the AIL to teach themselves how to design instruments, combining collaboration between members with ad-hoc design solutions (Mice bought the one-handed violin’s throat mic from a website aimed at people with Parkinson’s).
When did music become important to Mice? “Just always,” she says simply. She’s partially sighted – almost entirely blind in one eye – and doctors mistakenly forced her to wear an eyepatch over her good eye until she was 10. She only escaped the treatment after “cheating” an eye test, hurriedly making up a song to help her memorise the letters on the chart, then reciting them once her eye was covered up. “So yeah, music saved my life,” she says, bashfully.
AIL researcher Laurel Pardue believes the lack of visible disabled musicians in contemporary music is linked to the persistent lack of women in both the music and tech industries. The AIL is currently balanced evenly between male and female researchers, but that is unusual. A study conducted last year showed only 16% of people working in Stem (science, technology, engineering and maths) are female. In music tech that figure falls to 5%. Even at student level, 90% of music tech students are male, while female music tech students are the most likely to drop out. “Why is it that women get turned off even just starting?” Pardue asks.
“They don’t have the same physical restrictions, but it’s the same question,” she continues. “How do you get more women visibility at festivals, for instance, when everyone is still booking more men?” Mice also notes the importance of recognising people like herself in music: “I definitely have my role models, whether they’re women or just inspiring people.” The BBC recently revealed that 77% of acts booked in the UK in 2018 were male. Mice herself has addressed this, telling me she has often phoned event organisers to ask why only men were booked on a particular lineup. “You’re putting on a show, perpetuating this image of who a professional is in this domain,” she says. “So you’re contributing to the problem by running that sort of show.”
Pardue also performed at the Iklectik the other night, playing her own augmented violin alongside live-coder Jack Armitage (better known as Lil Data). About a decade ago, she was working at software company Pro Tools: “I think we had 150 engineers,” she says. “And it wasn’t until we walked into an all-engineers meeting that I was like: ‘Oh … me and the intern are the only women in here.’” Mice adds that even after years working as an artist “people just don’t take you seriously. It’s as if you’ve just discovered music and are like: ‘Oh, I might give it a go and then next week I’ll learn how to sew’. You’ll get offstage and people will be like: ‘Hey, you should probably exchange this pedal for that pedal’. Don’t you think I might have had that thought already?’” she sighs. “I think that could be the answer for why people drop out.”
At the Sonic Arts Research Centre, Queen’s University Belfast, Franziska Schroeder and Matilde Meireles have worked on inclusive instrument design as part of the research group Performance Without Barriers. I ask them if there’s a connection between the lack of women in music tech and accessibility in instrument design: Schroeder emphasises the need for “voices around the table”, people of all ethnicities, ages and, crucially, abilities being involved in design processes.
She and Meireles were approached by Zach Kinstner to test the EXA: The Infinite Instrument, which is operated through VR, with a pair of controllers attached to the musician’s hands, functioning like drumsticks, creating sounds when hit against coloured shapes in the VR world. “We tried it out, and while a fantastic instrument for able-bodied performers, it didn’t work for disabled musicians,” says Schroeder. Mary Louise McCord, a musician with cerebral palsy working with accessible music charity Drake Music Project in Northern Ireland, had difficulty playing the EXA due to the high motor control required to operate it. On Schroeder and Meireles’s advice, bespoke adjustments were made to the VR design, making the musical shapes easier to interact with. “It became very clear,” Schroeder adds, “that we need to put inclusion at the start of the design process, rather than it being an afterthought of: ‘How can we now change all this?’”
Liz Jackson, founder of disability self-advocacy organisation The Disabled List, has critiqued what’s known as “design thinking”, an approach to creating more accessible products developed in the 1960s – predominantly by able-bodied white men. It relies on empathy, interviewing and observing disabled people and then tailoring an approach accordingly. But, Jackson argues, this often feels “less like empathy and a little bit more like designers are gleaning our ideas and our life hacks so that they can sell them back to us as inspirational do-good without ever giving us credit.”
Meireles concurs. “If there’s an opportunity to engage with disabled people and give them a voice, that’s what collaboration should be about: sharing experiences and learning,” she says. “The more people we get to know, the more we can expand these projects.”
I get the sense that collaboration and diversity – at every stage of the design process – are more important than simply promoting the surface-level visibility of women and disabled musicians in music tech. That said, anyone looking for role models could do a lot worse than Steward or Mice. A week after the Iklectik show, I go to see Mice at a warehouse party. This time she plays tracks from her new album on an Octatrack sampler, another instrument she commands masterfully. The tight crowd is transfixed and, as she tells me afterwards, no one messed with her setup. There’s a long way to go, but she is one of a few reasons for optimism.
Other than pornography, there is no film genre so concerned with the body, nor of gouging a reaction from it, than horror. The word is derived the Latin horrēre – which describes how hairs on the nape of the neck bristle when one is flushed with fear or excitement. Often, this reaction is provoked by images of the body itself: The Phantom of the Opera’s disfigured half-face; the flesh of Frankenstein’s monster fixed together with nails; the extreme anaemia of Dracula. All of these fantastically distorted bodies must have raised combfuls of baby hairs by now.
And now to these we must add Ari Aster’s Midsommar, which elicited gasps at the screening I attended when the camera panned to Ruben, “the disabled one” as a character describes him. In keeping with Aster’s previous film Hereditary, in which physical and mental disability provides a metaphor for trauma and familial dysfunction, the disabled body once again becomes the monstrous body, used to convey a monstrous world.
Midsommar seems to hark back to the horror film’s eugenicist beginnings. It’s no coincidence that the monstrous tropes of horror’s mainstream began to be configured during the rise of eugenics in the United States. Identified as one of the first horror films, 1917’s The Black Stork depicts a “heroic” doctor who condemns a syphilitic child to die after convincing its parents that the world would be better off without it.
A flurry of eugenicist horror films came in its wake, with the genre reaching peak popularity in the 1930s. All revolving around “fantasies of alternative reproduction,” as film historian David J Skal writes in Screams of Reason, the wave of eugenicist films came at a time when it was feared that the white and able-bodied race would cease reproducing. After the terrors of Nazi Germany, their production went into rapid decline, but the eugenicist impulse was already embedded in the horror genre. Filled with unorthodox reproduction, harmful inheritance, and physical and mental deformities – even today, many horror films are a eugenicist’s worst nightmare.
“Eugenic assumptions about bodily form and biological inheritance were vital to the formation of classic horror’s visual and narrative conventions,” Angela Smith argues in her book Hideous Progeny. While Cronenbergian body horror – which uses the able-bodied as its site of play – has largely occupied the genre’s avant garde, Lupita Nyong’o’s monstrous double in Jordan Peele’s Us proved that disability is still considered shorthand for horror, as Nyong’o said that she had tailored her vocal performance after the larynx disorder spasmodic dysphonia. “What is difficult for us, and for the thousands of people living with spasmodic dysphonia, is this association to their voice with what might be considered haunting,” the National Spasmodic Dysphonia Association wrote in response.
Aster himself appears to be fully aware of Midsommar’s use of disability. In a recent interview with Forbes, he says Ruben is “a very important character. He’s important more as a symbol, as an idea, than he is even as a character”. Despite his acuity, there seems to be a resistance on his part to elevate the genre beyond its ableist and eugenicist beginnings. How can a new wave of horror truly surface when the same damaging tropes are still being used?
Loud sounds, bright lights, sweaty crowds – a gig can be an overwhelming experience for someone with autism, who may be oversensitive to sensory stimuli. As a result, many autistic music fans stay away, and another corner of society becomes closed off to them – the National Autistic Society (NAS) has found that 79% of people with autism are socially isolated.
Around 700,000 people in the UK have autism – more than 1% of the population. Increasing awareness of their access needs has led to adapted versions of popular events, such as “autism-friendly” cinema screenings, with dimmer lighting and soundtracks played at a lower volume, but these are primarily geared towards families with young autistic children. With the majority of concertgoers being teens and adults, there has been less interest in the creation of autism-friendly live music performances.
Those lucky enough to receive support during childhood, from a special educational needs coordinator or mental health services, often see this help withdrawn as they get older, resulting in that social isolation. Music can be a lifeline. For Elliot Knight, a Bristol-based punk musician and promoter who is autistic, and struggles to function in a typical workplace, music is a way of “filling [their] days” and a “special interest” (the term used to describe highly focused interests held by many autistic individuals). Elliot recently started a band called Nervous Rex, of which two of the three members are autistic, “and we’ve been playing a lot of shows and that’s really fun and cool”.
Although special interests can pose challenges – for instance when they distract autistic people from their responsibilities – they are also described by many autistic people an important source of wellbeing, acting as a buffer to anxiety and depression.
Knight, a non-binary person who uses gender-neutral pronouns, says their ability to engage with a special interest can be hindered when the sensory issues accompanying their autism collide with the setup of many music venues. The anxiety-provoking combination of loud music and crowds means they struggle to attend gigs alone: “I go to a lot of gigs, and I tend to have to go with another person, or otherwise it’s even more stressful. Most of the time, I wear ear defenders, stand near the back and take very, very frequent breaks.”
If Knight doesn’t take these steps, they may have to leave early. Inaccessible venues don’t help: “Autism brings me a lot of fatigue, and not having spaces to sit down is really difficult. It would be nice to not have to ask for a chair, and some venues don’t even have chairs, which is ridiculous.”
There is an overlap between autistic access requirements and those of people with other conditions, such as chronic fatigue. Although not all people diagnosed with autism identify as disabled, many autism advocates do, and think their struggle is linked to accessibility for disabled people in general.
For example, Robin Jax, an autistic Leamington musician, cites commentary made by “the wider disability rights people I follow on Twitter” on the inaccessibility of DIY music venues as relevant to autistic people: “You put it all together, but did you put it together for everyone? No, because you have to go through several flights of stairs, the lights are nonexistent or too much, the way that things are laid out is often very confusing.”
Disabled people are protected by the Equality Act 2010, which stipulates that businesses provide “reasonable adjustments” to make venues accessible. The difficulty is that autism is hugely varied – it’s often said by neurodiversity advocates often say that if you’ve met one autistic person, you’ve met one autistic person – and it is hard to provide a one-size-fits-all solution. Overwhelmed by the number of issues raised by the access needs of autistic concertgoers, some may be reluctant to make changes, particularly if they lack resources. But there are simple, inexpensive adjustments venues could make.
Earplugs, for example, are a lifesaver for many autistic people as well as a necessity for many concertgoers who wants to avoid hearing damage. But although some venues say earplugs are available on request, hearing protection at gigs is by no means ubiquitous.
Rowland Straylight, a musician and DJ with Asperger syndrome who is based in Leeds, says: “I have lost track of the number of times I’ve had to explain that I’m carrying a pack of earplugs and not some kind of drug paraphernalia.” Normalising the use of hearing protection would be of particular benefit to autistic people who are sensitive to loud sounds, but it would enhance the wellbeing of all concertgoers.
Some of the people who have made music more accessible to autistic people are on the spectrum themselves. Robin Jax founded Tiergarten Records – a label for “neurodiverse musicians” – providing an outlet for autistic artists to get their work heard. He defines neurodiverse as “having a brain that functions in ways that diverge significantly from the dominant societal standards of normal”. The label is small, based in Robin’s home, but it releases music in both digital and physical formats. “As far as I’m aware, it is the only neurodiverse record label in the world, or one specifically around the themes of neurodiversity and neurodivergence.”
While Robin acknowledges the importance of sensory accommodations (for example quiet spaces where autistic people can recharge), he says there also needs to be a shift in attitudes within the music industry, from record label execs to venue staff. “If autistic people come as fans and are uncomfortable, they may feel their discomfort is something [venues] don’t want to deal with – that’s very upsetting.”
He recommends training for people working in the industry so that they’re more aware of the challenges autistic people can experience. Robin also says that unspoken music industry norms need to be made more clearcut so that autistic employees, who may struggle to intuit what’s expected of them, aren’t placed at a disadvantage.
There are charities working to enhance accessibility for autistic gig-goers. Attitude Is Everything (AiE) has worked since 2000 to champion the inclusion of disabled music fans, providing training and consultancy on accessibility as well as free online guidance. Helen Ellis, who is autistic and works as an equality, diversity, and inclusion Coordinator for the National Autistic Society, suggests a few simple ways the music industry can show its commitment to autistic concertgoers: “Publicising details about venues in advance, letting fans know if flashing lights are going to be used at any point and booking venues that have accessible seating.”
Social isolation isn’t an inevitable part of being autistic. Engaging with music, either as a hobby or professionally, is one of many ways autistic people can create connections with others – but only if they’re given the chance.
[09/07, 20:53] Mustafaa: Abbot Road earlier today [09/07, 20:53]Mustafaa: The man parked on single yellow line after 5:30 with disabled badge on his car. The police told him to move then assaulted him with his his wife and disabled child in his car pic.twitter.com/JAbNTPGsFf
The DWP has announced that existing PIP claimants who are over pension age will now be covered by the light touch review system, meaning that they will only be assessed every ten years.
Back in May we revealed that new PIP claimants whose review would have been scheduled after they had reached State Pension age would instead receive an ongoing award with a light touch review at 10 years.
At the time, Minister for Disabled People Justin Tomlinson said:
“We are determined to improve our support for disabled people, and stopping needless PIP reviews for pensioners is the right thing to do.
“This step means new claimants to PIP who reach State Pension age before their review is due won’t have one unless they tell us their needs have changed, and the next step is to bring this in for all pensioners.”
The DWP has now announced that the 10 year light touch review has been extended to existing PIP claimants above State Pension age. The department claims that 290,000 claimants will benefit from this latest move.
Work and Pensions Secretary Amber Rudd said:
“I want the benefit system to be a source of support for disabled people, not a source of worry. That’s why we’re scrapping needless PIP reassessments for pensioners whose situation is unlikely to change.
“This underlines our commitment to ensuring that the most vulnerable get the support they’re entitled to.”
The switch to light touch reviews for claimants of pensionable age was announced back in March of this year but no timetable for its full introduction was given at that time.
Tens of millions of pounds of public money is believed to have been stolen, with claimants left owing hundreds, after fraudsters targeted Britain’s main welfare benefit, universal credit.
The BBC has been told of “money pouring out of the public purse” as criminals make “staggering” bogus online claims.
A loophole in the online system is exploited to make fraudulent applications and claim advance loans.
The government says it is determined to bring fraudsters to justice.
A benefits official told the BBC that in one job centre more than a third of claims are currently suspected of being bogus, while £100,000 of fraudulent activity each month was recorded at another branch.
Claims include one from “a 19-year-old with six blind children” and another saying “Harry Kane” (the name of the Tottenham and England footballer) was their landlord.
Another official told the BBC that the Department for Work and Pensions estimates 10% of the 100,000 or more advances paid monthly are potentially bogus.
This suggests that fraud rates on universal credit are about four times higher than on most other benefits.
Ironically, one of the original goals of universal credit was to save about a billion pounds in fraud and error.
Jade’s story
Jade Thomas, 31, from Manchester, now owes more than £1,500 of a loan arranged for her by a fraudster, but she had to pay him £1,000 for setting it up – so received only £525 of it.
“All he needed was my provisional licence and my bank card and a photo which he had to take there and then,” she recalls.
“He had a badge from the Job Centre Plus… he was dressed smartly.”
Within two or three hours the money, which she had been led to believe was a type of grant, was in her account.
She only realised it was a fraud, and that she would have to pay back the full amount, when her tax credits stopped and an official explained that she had been put on to universal credit.
The unexpected debt has pushed her into arrears with both her rent and council tax.
Image caption The scam pushed Jade Thomas into rent and council tax arrears
How does the scam work?
The fraudster contacts the claimant and says they can get them a government grant or a payday loan.
The claimant hands over their details and the fraudster makes a universal credit application on their behalf, sometimes unbeknown to the claimant.
The DWP approves the claim and transfers the money into the claimant’s bank account, whereupon the fraudster demands a hefty “fee”.
The scammer takes a large chunk of the cash, and disappears.
But because the money is a loan, the claimant is then left owing the entire amount to the DWP.
Claimants tricked
Messages from dozens of officials on an internal DWP message board, seen by the BBC, show the extent of the scam:
“How many more times can claimants add children named Ha, Ha and Ha to their UC claims, or add a landlord called Harry Kane, or add any other obviously made-up names to claim a UC advance?”
“This is a massive issue. They are literally making up street names and children (I have had Lisa, Bart and Homer recently, Simpsons cartoon characters) getting the money and we never hear from them again.”
“A lot of what we see is uni students being approached to make a claim for a fee: 19 years old with six blind children.”
The forum, which is open to operational staff within job centres, says the scam is particularly rife in the north-west of England.
“Around 200-300 new referrals every day” in the region are fictitious, wrote one official, and “at between £1,200 and £1,500 for each advance, the numbers are staggering”.
Another official writes that “the loss of taxpayers’ money could be in the region of £20m”.
The first the victim knows that it is actually a scam is often when the DWP writes to say they are now on universal credit, and that any other benefits they are on are being stopped immediately.
The message board also shows the exasperation of staff that the senior leadership of the DWP are unable to stop the scam.
“To say there is a risk around UC advances is possibly the understatement of the year,” wrote one staff member, who added: “Money is pouring out of the public purse like lottery jackpots every day.
“All of us ‘on the shop floor’ are screaming about it but nobody is listening who has any influence.”
Another employee wrote: “That such a loophole exists and we are receiving massive individual and organised attacks to our benefit system puts this department to shame.
“As taxpayers, I would imagine we are all incensed that even though the system is broken and being targeted, we are still allowing the abuse to happen.”
The Department for Work and Pensions said it had already secured its first conviction for this type of fraud.
DWP minister Baroness Buscombe added: “We’re encouraging people to listen to their instincts. If someone offers you a low-cost loan from the government, they may be trying to steal your identity.
“Treat your personal information for benefits in the same way you would for your bank. And if you think you’ve been targeted, we urge you to report it urgently.”
A proud and humble rail worker was finally awarded disability benefits when his widow took his ASHES to an appeal hearing.
Ann Dale and her children placed the urn in front of stunned officials, saying: “We promised him his day in court.”
Her husband Albert, 64, had endured a string of debilitating conditions but was twice rejected for benefits by the Department for Work and Pensions.
He died before an appeal could be held. But Ann, 59, was determined to get justice and when a letter came with a court date she seized her opportunity.
She told the Sunday Mirror: “I made him a promise on his deathbed that I would fight his case. I thought when he died that his appeal would die with him.
“The DWP was paying me a widow’s pension so they knew he’d died. But last month I got a letter with a court date.
“I just thought, ‘Right, we’re going to have our day in court’.”
Hospital catering assistant Ann and two of her children – Samantha, 42, and Johnpaul, 40 – sat before a judge, doctor and representative from the DWP.
She went on: “I introduced myself and my daughter. Johnpaul told them who he was and said ‘let me give Dad a seat’.”
He then took the urn containing Albert’s ashes from a bag and placed it on the table.
Ann said: “I could tell they were uncomfortable. To be fair, they didn’t make the original decision, but they got the brunt of it.
“I felt a bit sorry for them, the guy from the DWP looked horrified, but it was his department that made the decision.”
The panel upheld the appeal for Personal Independence Payments, awarding Albert the higher weekly rate for both daily living (£87.65) and mobility (£61.20). The cash will be backdated from April last year until November 19 when he died.
But the whole sorry saga came after months of pain and humiliation for Albert, who had to quit his job of 41 years.
He had chronic obstructive pulmonary disease affecting his lungs, type 2 diabetes, a heart condition and carpal tunnel syndrome, causing pain in his hands. Albert died from a cardiac arrest at home in Moston, Gtr Manchester, last November.
His hearing at Manchester Justice Centre last Tuesday heard he struggled to walk without getting out of breath and was once stranded in a bath for four hours.
Albert, a father of four and grandad of 15, finished work as a locomotive cleaner in December 2017.
But after one meeting officials ruled that “at no point was he breathless” and “he could stand up without help”.
Ann was furious. She said: “He was so upset. He kept saying ‘they’re calling me a liar’. He paid in all his life and he’d never claimed a penny. And when he did claim, he received nothing. He was a good, hardworking, honest man and he couldn’t believe the way he was treated.
“When he finished it broke him. If he could have worked he would have.
“But he looked like a 90-year-old man when he walked – doddery, like he was drunk. It was soul-destroying.”
Figures show a record 60,000 people won appeals against the DWP’s disability benefit tests in 2018 – some 72% of all tribunals. The cost to the taxpayer for these hearings was £26.5million.
Ann demanded changes to the assessment system, adding: “They’ve created this atmosphere saying people are scrounging, but that’s not true. They are targeting the most needy, it’s cruel.”
She also told of mixed emotions as daughter Joanne, 37, walked down the aisle last weekend. Ann said: “Joanne wanted to cancel, but her dad wouldn’t have wanted that.”
It is understood the DWP wrote to Ann to apologise.
A spokesperson said: “Our thoughts are with Mr Dale’s family and we are sorry for the distress caused.”
At heart, she is a very tidy person – but her partner and three children are not and regularly leave the house in an unwelcome mess. She also lives with a chronic illness which prevents her from cleaning as much as she would like – and the mess causes frustration to build.
“There’s something about having control over your immediate environment that makes you feel at ease and at peace,” she says. “When that’s interfered with, it’s quite hard not to feel a bit resentful.”
Kristina found she spent more time looking at her surroundings when her impairments flared and made movement difficult.
“I have Ehlers Danlos Syndrome (EDS), which means that my joints dislocate quite easily and I’m relying on muscle strength to keep them in place. So I spend probably three days a week laid up at home.”
She also has arthritis and chronic fatigue.
As cleaning fell further down her to-do list, the mum of three felt like she wasn’t “doing her job” anymore.
Speaking about other stay-at-home mums that she knew, she says “their main focus was on keeping house and raising children”.
She felt some of them saw tidiness as a badge of honour and thought she was being told “you’re not fit enough to get up and take control”.
As the house became messier, Kristina devised a way to take back some of the control by presenting her family with photo evidence of the mess they had created. To really make the point, she zoomed in on it so they couldn’t ignore it.
But the photographs didn’t have the response she expected either with her family or others.
“People would say ‘Oh, that’s really nice, I like that,’ or ‘It’s very vibrant – what is it?’ They actually looked quite abstract and colourful.”
They did not recognise the images were of mould under the fridge or dirt on the skirting board.
When she put the photos on social media, she received a slew of responses.
People shared their own “dirty stories” with her, complained about the “messy ones” in their houses, the hoarders, the state of the kids’ bedrooms and the fact they had to rely on others to help out.
Kristina remembers one person who posted about some hurried tidying she’d done which led to a surprise later: “One day, she went into the kitchen, opened the fridge and there were a pair of shoes in there.”
The fact that her photos had been seen as colourful and abstract got Kristina’s mind whirring.
She started to experiment with the images. She developed the photos and made kaleidoscopic patterns of them. Then she took it a step further and printed them on fabric and furnishings.
By incorporating these patterns into the furniture she wanted to give the idea that all she could see was mess and dirt and that it had “taken over the room”.
It inspired her new art installation My Dirty Secret – an exploration of her unusual relationship with mess.
Alongside the furniture is a television which plays a video of the stories Kristina gathered from other people after she shared her experience of the unmanageable mess in her household.
The video is a Through the Keyhole spoof, called Through the Back Door, with two presenters who guide viewers through different items in the room describing the mess, the textures and smells.
Kristina says many stories were very personal in nature.
“Some people talk about the use of carers, relatives who have died in house fires because they hoarded and couldn’t get out.
“I’ve talked to quite a few people with mental health issues who have hidden all their washing-up for weeks in cupboards.” She says. “They shut the cupboard door so that when family members come down they see everything’s okay.”
Kristina was mindful of the pressure and embarrassment some people feel about the mess in their homes. So, as well as showing people’s stories on the television, the installation includes a telephone which plays out audio recordings. With no pictures this keeps storytellers anonymous and needs to be lifted so you can hear it.
“It’s like someone whispering in your ear and passing on a more private secret,” she says.
With accessibility in mind, the artwork includes captions and a British Sign Language (BSL) interpreter and there are transcripts in the form of handwritten letters, addressed to The Messy House.
“You can open the mail and still have that idea that they’re being let into a secret or a private aside,” she says.
Kristina was surprised to receive lots of positive feedback from other less mobile people who had similar feelings.
“Everybody said ‘Thank you’ for acknowledging something that I’m going through that people rarely talk about.”
Kristina’s work will feature at Arts B&B in Blackpool in July where she has used her images to design a whole room.
The singer told the crowd about his medical condition as he finished his set at British Summer Time Hyde Park.
He said he had found a donor and would perform three more shows before the operation in September, saying: “I’m all good, I’m all good.”
Fans greeted the news with a loud, supportive cheer, applauding the 69-year-old singer as he left the stage.
He had just finished playing the song Superstition when he told the crowd he wanted to prevent “rumours” spreading about his health.
“I’m all good, I’m all good, all good, I have a donor and it’s all good,” he said.
“I want you to know, I came here to give you my love and thank you for your love. I love you and God bless you.”
The NHS says the most common reason for needing a transplant is kidney failure or end-stage chronic kidney disease.
It is possible to donate a kidney while still alive as people only need one kidney to survive.
Wonder’s support act at Saturday’s gig was his friend Lionel Richie.
In 2017 Wonder paid tribute to the former Commodores front man by covering Easy at his Kennedy Centre Honours ceremony.
Richie later remarked: “I got into the business because I wanted to be like Stevie Wonder, so for all of a sudden for Stevie to be singing my song, it was surreal.”
Beth and Peter Morrison remember every detail about the day their son Calum returned, broken, from Kingspark school. It was Friday 24 September 2010. The school bus dropped him home at 3.25pm. His face was ashen, his lips blue. He was wearing different clothes from those he had left in that morning – a thin T-shirt, shorts and plimsolls, no underwear and no coat. His own clothes were soaked in urine and stuffed in a plastic bag. “I asked him what was wrong. He said: ‘I dizzy, Mummy, teacher hurt,’” Beth says. Although Calum was 11 at the time, he still spoke like a toddler.
Beth called the school immediately to find out what had happened. Beth says she was kept holding for more than 15 minutes before being told staff were in a meeting. That evening, Calum was clingy and tearful. “As I was tucking him in for the night, he said: ‘No school, Mummy, school bad.’”
The next morning, when Beth was taking off his pyjamas, she noticed the bruises on his upper arms. She asked Calum about them. “Teacher hurt arm. Wet on the floor,” he said. She looked in the home-school diary – a logbook used by the school and Calum’s parents to relay noteworthy incidents – for clues as to what had happened. Nothing was recorded.
We are sitting in the kitchen of the Morrisons’ bungalow in a small coastal town near Dundee. Their home, which has been adapted to Calum’s needs, has a warm, welcoming feel. Calum, now 20, wanders in and out. He is lovable, chatty and childlike. His language still resembles that of a four-year-old.
In Calum’s early years, his parents thought he was simply a gifted child. He taught himself to read at three and on his first day at primary school he wrote the word “conscientiousness” on the teacher’s desk. At seven, he had a reading age of 14. Yet he was still non-verbal. He was sent to a specialist, who diagnosed hyperlexia – a syndrome characterised by a child’s precocious ability to read, accompanied by profound difficulties in understanding and talking. He was also diagnosed with epilepsy, cerebral palsy and autism.
It had all started so promisingly at Kingspark, a special educational needs school in Dundee. The school, which caters for children with complex medical problems and learning difficulties, had just opened. The facilities were impressive – two swimming pools, specially adapted bikes, a soft-play area, sensory rooms. Most importantly, it had a fully equipped medical centre on site. The medical team could reach anywhere in the building within a minute of a panic button being pressed. Beth and Peter were relieved. Their son would be happy here.
And he was. For six weeks. Then they were told that Calum was being placed in the school’s enhanced support area (ESA). “I thought it was a promotion, and we were pleased Calum was doing so well,” says Beth. It was on his first day there that he returned home badly bruised. “He did have regular seizures, so we thought perhaps he had injured himself and staff had held his arms tightly to prevent further harm,” Peter says. Although Beth was not able to speak to a teacher when she called that afternoon, the Morrisons were convinced there must have been a simple explanation, so they sent Calum back to school the following Monday.
From 9am, Beth phoned the school repeatedly to find out what had happened, but she says nobody would talk to her. In the afternoon, she says, a member of staff rang back. Beth asked if the bruises and urine-soaked clothes were the result of a seizure. She says she was told they were the result of Calum having had an outburst. “She said he had been restrained for ‘behaviour’ and then ‘urinated out of protest’. She said they had sat him in a chair with an egg timer in front of him, so he could see he was being punished. We later found out from staff statements that Calum had been strapped into a chair.”
Nine years on, Calum’s parents are still shocked. “Urinating in protest?” Peter says. “Our son had not wet himself once since he was out of nappies. And he doesn’t have outbursts at home. Of course he gets upset sometimes, but we can always talk him round.” Not only had Calum never seen an egg timer, but he had no concept of time – and still has none today. Beth put all this to the school, and she says she can recite the reply verbatim: “Don’t worry, Mrs Morrison, we can handle this. It’s going to be hard, but we can manage this. Calum must learn to behave.”
The Morrisons’ first thought was to take Calum out of Kingspark immediately. But they were told by the council that it was the only school equipped to deal with Calum’s needs and that a criminal prosecution against the parents could follow any refusal to school him. So they agreed to let him continue there while they sought advice.
A day later, on Tuesday 28 September, Calum again returned from school distressed and wearing different clothes, his own soaked in urine and in a bag. He had a long abrasion down his spine and hundreds of tiny, red spots across his body. His parents feared it was meningitis and took him to the local doctors’ surgery. The GP suggested that Calum was suffering petechial haemorrhaging, most likely caused by extreme pressure on his chest while being restrained face down on the floor. She arranged for him to go to hospital for tests the next day, to rule out a blood-clotting problem. By Wednesday morning, all of Calum’s bruises were clearly visible – Beth counted 63 of them, including 16 on his upper right arm alone. His spine and throat were bruised and there were hand-print marks on his right shoulder and each of his ankles. The doctor who conducted the tests on Calum that day suggested the police should be informed about his injuries.
Calum did not return to Kingspark that week. Beth asked what had happened on the Tuesday and says she was told that he had been restrained in the gym by four staff members, for “refusing to follow the same route as the other children” when riding a bike designed for children with disabilities. It later emerged from records of the incident that two members of staff were across his legs, one was over the top of his body while another held his chin off the floor. After being pinned down, he had wet himself. He was then stripped of his clothes and again put in the chair with the egg timer. Although Calum was 11, he weighed four stone (25kg) and was the size of an average seven-year-old.
“If Calum’s injuries had occurred at home, our boy would have been removed from us,” Peter says. “But we were told that he had to return to the place that had hurt him. And we were repeatedly warned by Dundee council that it was a criminal offence to refuse to send him to school.”
What is defined as “reasonable force” can be used in British schools to prevent a pupil from committing an offence, causing injury or damage or disrupting good order. Beth says that restraining children such as Calum for breaking rules is nonsense, because they have no concept of what the rules are. Then there is the slippery word “reasonable”. Beth believes the force used against Calum was anything but.
The Morrisons said they would send him back to school only with a guarantee that he would not be restrained. Three weeks after his first restraint, Calum returned. There were no more bruises or soiled clothing, but he was terrified of the school. Eventually, it was agreed he would attend only for half days, which he did for the next two and a half years.
Beth says the final straw came on Wednesday 15 May 2013. Calum was attending Kingspark only in the afternoons, driven there by Beth or Peter. That day, Beth and Calum arrived at 1.20pm. They waited in reception until a teacher arrived to take him. “I saw a small boy, about eight or nine years old, being led along a corridor, with two members of staff holding his upper arms tightly,” Beth says. “The boy started flapping his hands, like lots of autistic children do. He didn’t seem to be in danger of hurting himself or the others, but then staff appeared to slam his body into the wall and restrain him with a force that horrified me.”
Beth reported what she had seen to the police, who investigated and brought no charges. Calum never returned to Kingspark. His parents sent him to Carnoustie high, a mainstream school, where he spent four happy years. “Peter and I watched proudly as he went to his senior school prom and had a fantastic time,” Beth says. “The staff loved him and he was very well cared for.”
From the day Calum left Kingspark, Beth swore she would campaign to abolish the use of restraint for disciplinary purposes against special-needs children, and to ensure it is used as a last resort only to prevent harm to the child or others. She is also fighting to ensure that parents are informed when children are restrained. Six years on, she is still campaigning.
Soon after Calum left, other parents got in touch to tell her their children’s stories. Peter says they hadn’t realised the practice was widespread, as there was no “school-gate culture” at Kingspark; the children were picked up in the morning by a school bus and dropped at home in the afternoon. “This is how schools like Kingspark get away with it,” he says.
In 2017, Beth set up the charity Positive & Active Behaviour Support Scotland (PABSS), which has collated 712 stories from families of children with additional needs who have been injured while being restrained. She says that “not a single one of these children is neurotypical”. Earlier this year, PABSS and the Challenging Behaviour Foundation, a UK-wide charity for people with severe learning disabilities, produced a report showing that, of the 566 families of children with learning disabilities and challenging behaviour surveyed, 88% said their child had experienced restraint, with 35% saying they had experienced it regularly. Most of these restraints occurred in school settings. Fifty-eight per cent of families questioned said their children had suffered injuries after being restrained, including “unexplained bruises, what looked like carpet burns to knees and ankles, unexplained broken wrist”.
The report examined all restrictive interventions with disabled children, including mechanical restraint (such as being strapped into a chair), chemical restraint (medication) and seclusion (being isolated in a room that the child is prevented from leaving), concluding that all were overused. Sixty per cent of those surveyed believed that restrictive interventions were used by schools as their main method of tackling challenging behaviour, rather than as a last resort to prevent injury. Only 17% of the families surveyed said that a restrictive intervention had been recorded.
In 2016, Beth won an award for outstanding achievement at the British Institute of Learning Disabilities. Last year, she was inducted on to the Saltire Society’s list of outstanding women of Scotland. But it is little consolation for the guilt she feels over her son’s experience, she says. “Calum tried desperately to communicate how distressed he was and I missed the signs. I will have to live with the fact for the rest of my life.”
In 2015, Dr Brodie Paterson, a specialist in handling vulnerable people, published a report claiming that Calum’s injuries were “inconsistent” with the correct restraint techniques, and that he had “previously only come across such petechial haemorrhaging in fatalities associated with restraint application”. He claims that Calum was exposed to a potentially fatal level of risk that was “grossly disproportionate”. A police investigation concluded in March 2014 that there had been “no criminal intent” on the part of the staff who restrained Calum.
Kingspark declined to comment on specific cases. A spokesperson for Dundee city council said: “The council has engaged with the Scottish children and young people’s commissioner’s investigation and subsequent report and has many of the recommendations in place. The most recent inspection of Kingspark school and local authority quality-assurance processes have found the school to provide a strong focus on ensuring the wellbeing of children and young people. These specific allegations were made nine years ago and it would not be appropriate to comment on individual issues.”
It was a fellow pupil who drew attention, in 2017, to the treatment of Michelle. The pupil – who, like Michelle, had special needs – scrawled a note that was passed on to Michelle’s parents. “Michelle has been locked in a room and has been banging on the door very loud all afternoon,” it said.
Michelle’s parents, Jane and Andrew, knew she had behaviour issues, but they had no idea that their 15-year-old daughter was regularly locked in a tiny, bare room. (The school has since admitted doing so.) “We were disgusted when we found out – sick and angry and sad,” Jane says. Like Beth, she talks of an overwhelming sense of guilt.
We meet Jane on a windy day at a hotel in Edinburgh, not far from where the family live in a small town in the Scottish Borders. Michelle cannot be here because she is in hospital having her seizure activity monitored. She has a rare, severe form of epilepsy.
Jane had a traumatic pregnancy. When she was 24 weeks pregnant, her brother died suddenly. She later discovered that, in the same week, Michelle suffered a stroke in the womb. Michelle was partly paralysed down the right side of her body. She was later diagnosed with autism and has traits of pathological demand avoidance (PDA), meaning that she resists everyday demands and expectations because they cause her huge anxiety.
Shortly before her fourth birthday, Michelle started at a local nursery, three mornings a week. When she was asked to do something she didn’t want to do, or couldn’t do, she would lie on the floor shouting. At the age of six, she started primary school and began to exhibit aggressive behaviour – swearing, spitting and lashing out at staff. She progressed to a mainstream secondary school, which had an annexe for children with special needs. Jane was told that occasionally Michelle would be given “time out” in a “blue space”, but it seemed nothing to worry about. If anything, it sounded rather idyllic.
Then Jane discovered that the space was a small, locked room with bolts on the outside, and that Michelle would hammer on the door to be released. Her parents withdrew Michelle from the school and began to investigate her educational history through freedom of information (FoI) requests. The more they found out, the more horrified they became. Her parents had never been told that she had been restrained at primary school and barred from school trips. One of a series of documents obtained under FoI revealed that Michelle’s teaching assistant had previous been sacked from a care home for abusing residents.
Jane discovered from the documents that, at secondary school, Michelle had been secluded on a daily basis as punishment for non-compliance. As Jane points out, Michelle doesn’t know how to comply. Perhaps most shockingly, Michelle’s behaviour support plan, which her parents had never been shown, stated that if members of staff were spat at by Michelle, they should “use a tissue to wipe the spit off yourself and gently wipe it back on to Michelle”. “The instruction was written by a teacher without talking to us or Michelle’s doctor or any of the experts,” Jane says. “The behaviour support plan was purely punitive. It was threatening all the way through, written without any understanding of Michelle’s individual needs.”
The school’s internal memo of the afternoon that triggered the alarm, which was obtained through a subject access request by Michelle’s parents, states that Michelle was “guided to the safe room following a small incident” and that she was “in crisis and kicking the door and screaming at staff”. The memo also states: “Staff clear this was not her asking to get out, but demonstrating physical aggression.” It further records: “As incident happened at end of day, diaries had already been written – email to parents about incident didn’t happen because it wasn’t a high-scale incident.”
Jane says that Michelle’s experience at school left her a wreck. “She couldn’t do the simple things that she used to do, like go for a walk, because she was so anxious.” Michelle is now thriving at the complex/additional needs unit in her new, mainstream school and her parents feel they have their daughter back. It is more than 20 miles each way, but Jane says it is worth it. Michelle has not been restrained or secluded once.
More than once, Jane says that maybe she and Andrew were “thick” not to have realised what was going on; but they had assumed that Michelle would be treated at school with the same respect as their other child, who does not have special needs. “Children with special needs were not treated as equals in this school,” she says. “They were dehumanised.”
Jane says all her complaints to the council about the school have been upheld, except for one. Her voice rises with disbelief. “They said seclusion was good practice for Michelle, but we know just how traumatised she was by it.” A spokesperson for Scottish Borders council says: “To ensure our practice remains in line with national guidance, we have been working to develop a new inclusion policy. This includes clear guidance on seclusion and restraint.”
Last December, the Scottish children’s commissioner, Bruce Adamson, published No Safe Place: Restraint And Seclusion In Scotland’s Schools. His investigation concluded that all such incidents should be recorded and that parents or carers should be told “as soon as reasonably practicable”. It also recommended that the Scottish government should publish a “rights-based national policy and guidance” on restraint and seclusion in schools. The Scottish government is still considering its full response.
Meanwhile, in England and Wales, a review commissioned in 2011 by Michael Gove, then the education secretary, reached a very different conclusion. Gove asked Charlie Taylor, then the government’s adviser on behaviour in schools, to review the recording and reporting of the use of force in schools. Taylor’s report distinguished between mainstream schools, where the use of significant force is “extremely rare”, and special schools, where “some pupils, either due to a special need or because they have severe behaviour difficulties, can require more regular physical intervention”. He also stated that “special schools may have a different threshold for what is ‘significant’ force and they use their judgment to decide which incidents should be reported to parents”.
Taylor reported that obliging schools to record significant incidents of force could have a “negative effect” on the relationship between staff in special schools and parents. He said it would “add to the bureaucratic burden for some, but not all, schools”.
Taylor’s review did not cause an outcry at the time – perhaps because so few people knew about it. But campaigners today are appalled by its tone and its findings. They point out that it is impossible to know how widespread the restraint and seclusion of children is in schools, precisely because it has never been obligatory for schools to record and report it.
The Challenging Behaviour Foundation stresses that the inappropriate use of restraint is not an issue in all special schools. “We have examples of children who have moved from one special school, where staff said it was impossible to support their child without the use of restrictive interventions, to another where they are never used,” says Vivien Cooper, the charity’s chief executive. “So this is about leadership, school practice, staff skills and training, not the type of school.” There are alternatives to restraint. For example, Cooper says, if a child suffers from sensory overload, a teacher can move them to a less noisy or brightly lit area; non-verbal children can be taught signs or symbols to indicate that they need a break. “Schools using positive behaviour support report huge reductions in the use of restrictive interventions.”
The government finished consulting on draft guidelines to reduce the need for restraint for young people with special education needs and disabilities in January 2018. Last week, it finally published that report. It recommended that policies should be in place “for promoting positive relationships and behaviours and eliminating unnecessary and inappropriate use of restraint”, and that a system should be in place for the recording and reporting of incidents “where required”.
Campaigners are not impressed. “The guidance is non-statutory, does not cover mainstream schools – where we know much restraint and seclusion takes place – and does not require schools to inform parents if a restrictive intervention has taken place,” says Cooper. “It defends the use of restrictive practices such as seclusion rooms ‘as a disciplinary penalty’ and, unlike the equivalent adult guidance, fails to prohibit the use of prone restraint, which is known to pose significant risks. It is hard to square this with a stated commitment to children’s rights.”
***
Make no mistake, Karen says: her son Adam is hard work. Adam is 14 and has been diagnosed with attention deficit hyperactivity disorder (ADHD) and autism. He is potty-mouthed and has meltdowns galore, but she has never felt threatened by him. “He’ll hurl abuse at you or throw something, but he’d never actually attack anybody.” This made it all the more shocking when she discovered how many times Adam had been restrained soon after starting secondary school.
Like Michelle, Adam also has traits of PDA, as well as a sensory processing disorder that means he can’t stand being touched. It is five years since Karen gave him a proper hug. But, she says, that is just the way things are with Adam; the family has adapted. “Sometimes I ask him for a cuddle and he tells me to fuck off. The thing about Adam is that he says all the things we’d like to say but don’t. He’s got a brilliant sense of humour.”
Karen and her husband John live in a well-to-do part of Essex. Their home is large, comfortable and messy – as you might expect of a family with four young boys. The back garden is crammed with rabbit hutches, footballs and bikes. On the wall by the front door is a framed quote – the family maxim: “In this house, we do ADHD, we do meltdowns, we do tears and frustration, we worry and we stress, but we also hope for a better day and we persevere and we smile because in this house we don’t go down without a fight.”
Adam went to a mainstream primary school where he did OK. But after eight unhappy months at secondary school, Karen home-schooled him for a short period while a special school was found. He was eventually placed at a school in the county for children with social, emotional or mental health problems. Eighteen months on, he is still struggling after his brief experience there.
By the time he left, he had been excluded 14 times and restrained on 30 separate occasions, in the space of 12 weeks. Often he had been restrained several times in one incident. “It all looked really good at the start, but I wouldn’t put my dog in that school,” Karen says. “One day, Adam came home and hid in the garage. He looked like he’d gone 10 rounds in a boxing ring. He was covered in bruises and was completely traumatised. The longer this went on, the more restraints were being used. They told us about things he’d done and I was thinking: ‘Is it actually my child doing this?’ Because we’d never heard of such behaviours.”
Did she know about the restraint system before Adam started there? “I was asked to sign a form allowing them to restrain him. I refused, but they said he would be restrained anyway if necessary. But I never thought Adam would have to be. He used to go to army cadets, he played for a football team. We go to our caravan at the coast every weekend and he is never aggressive to any other children; he’s got loads of friends down there.”
Things came to a head in March 2018 when Karen received a call at 3.15pm telling her to go to school as there was a crisis. On her way there, she was passed by two police cars with their sirens blaring. After Adam had been restrained nine times that day, he had spat, kicked and thrown gravel at staff. The school called the police. When Karen arrived, Adam was standing on the playing field, hyperventilating and screaming. She tried to calm him down, but was told by police that she would be charged with obstruction if she didn’t get out of the way. Adam was then pinned down, handcuffed and put in a spit hood. “They took him to the station and me and my mum had to go and sit in custody with him till 1am,” says Karen. At the age of 12, Adam was convicted of criminal damage and six counts of actual bodily harm on staff, and given a reparation order – a non-custodial sentence supervised by a youth offending team.
He never went back to the school and has struggled since. He was recently excluded from another special school after being restrained. Karen fears that the 2018 incident has damaged Adam irreparably, as well as the family. “I trusted those people to look after my child and look what happened. I will always feel guilty for that.”
She sifts through the incident reports she obtained after making an FoI request, reading bits aloud. (Until today, her father had kept them because she could not face reading them.) Initially, her voice is calm and confident, but it soon begins to quiver. The details are shocking. In one incident, Adam was restrained for refusing to leave the school hall. “They are only supposed to restrain as a last resort. How can they say this is the last resort?” Karen says. Another report states that Adam said he could not breathe while being restrained. Karen is convinced that some of the staff simply didn’t know what they were doing. “They’ve done a short course on restraint and think they know it all. And they’re just damaging children.”
The incident that resulted in Adam being charged lasted five hours and involved multiple restraints. Karen can barely believe what she is reading. “Three hundred minutes! All day that’s going on and then my son got arrested and charged at 12 years old.” She reads on: “‘Adam becomes increasingly aggressive when a hold is implemented.’ Of course he does. He’s got a sensory processing disorder and touch is his main trigger. I don’t have to touch Adam, so why do they?”
Finally, she reads a document that shocks her into tears – a restraint she knew nothing about. She takes a moment to compose herself. “This is horrendous. ‘Adam found some rope. He climbed up a tree with it… [name redacted] asked Adam to give her the rope and come down from the tree. He said he was going to hang himself and put the rope around his neck.” She stops, wipes her tears and struggles to get her words out. “‘We asked him to remove the rope and give it to us. Adam then took the rope off and threw it over the fence.’” When Adam finally came down the tree, he was restrained again.
Karen throws down the document. “What is happening to a 12-year-old child that he is in a tree with a rope around his neck? This is pretty bad, isn’t it?” She exhales deeply, trying to catch her breath. “If we behaved like this to our kids, we wouldn’t have custody of them.”
A spokesperson for Essex county council said of the school: “Our last visit was in October 2018, and at that time all staff training was viewed to be up to date and in line with the behaviour policy. However, the safety and wellbeing of pupils in all Essex schools is paramount and when concerns are raised we will of course investigate when necessary.” The latest Ofsted report on the school, in January 2019, rated it as “good” and stated that procedures for the use of restraint were followed appropriately. The school added: “Parents/carers are informed every single time a child is restrained. Restrictive physical interventions are only used as a last resort, in order to keep the child and the people around them safe. All staff are fully trained in the use of management of actual or potential aggression techniques.”
Karen says the experience has taken a toll. “It’s smashed our marriage. This situation has been so fraught that I’m always on edge.”
When Adam started at the special school, he was meeting his academic targets and had not been in trouble with the police. Now, aged 14, he regularly goes missing, has a criminal record and still has the academic age of an 11-year-old. But Karen knows that, compared with some, he is lucky. “I’m a mum who’s quite intelligent and can say: ‘I’m not putting up with this’, but some parents have their own issues; they haven’t got the ability to stand up to these people. Who’s going to fight for those children?”
Back on the Dundee coast, Beth Morrison is preparing for the next stage of her battle. She has helped raised the funds to judicially review the secretary of state for education “in relation to the absence of a lawful statutory framework regulating the use of restraint of children” in Welsh and English schools. (She decided not to judicially review Scotland because she is confident it is on the brink of change.) All three claimants are children with disabilities who have experienced significant use of restraint at special schools in Wales, North Yorkshire and Essex. Beth argues that the current legislation discriminates against children with disabilities and is in contravention of the European convention on human rights.
It is nine years since her son returned from school traumatised, but she will not stop until she has got justice for him and other children like him. “Calum is no longer in education, but I will not walk away. I cannot sit here knowing that these cruel things are happening to our most vulnerable children, in the very place they should be kept safe.”
The shocking policy means they can’t get benefits such as Universal Credit without DWP interviews to see if they are fit for work.
It’s said to be causing distress and significant financial hardship to people who are diagnosed with an incurable disease.
Care organisation Marie Curie said: “People with a terminal illness may live for days, weeks, months or sometimes years.
“It can be difficult for doctors to predict how long someone will live for. This can depend on their diagnosis and any treatments they may be receiving.”
But the Government defines terminal illness as “when a person’s death can be reasonably expected within six months.”
This has been slammed as “outdated, arbitrary and not based on clinical reality” by the All-Party Parliamentary Group for Terminal Illness (APPG.)
The six-month rule, introduced into law 30 years ago, means that terminally ill patients expected to live longer than half a year do not get their benefits claims fast-tracked.
Instead, assessors from the DWP with no first-hand knowledge of the case are challenging medical judgments in a “wholly inappropriate way”, the report found.
The department was criticised for processes that are “overly time-consuming, demeaning and insensitive”, with terminally ill people expected to survive more than another six months being required to undergo work-focused interviews as part of their Universal Credit claims.
Drew Hendry, who set up the APPG in 2018, said: “Forcing somebody living with terminal illness to go through an intrusive face to-face assessment process is unfair and undignified – unbelievably, this can even include asking people with months to live to attend work capability assessments.
“This is to say nothing of the weeks-long delays and significant financial burdens families face getting the support they need if their doctor is unable to say with confidence that they will die within six months.”
The six-month rule was introduced in 1990 to exempt terminally ill people from the six-month qualifying period for Attendance Allowance.
Since then, it has been extended to new benefits including Universal Credit and Personal Independence Payment.
The group said it was ironic that, 30 years later, it has had “the unintended consequence of denying many more people the quick and easy ‘lifeline’ they need”.
Charities said the current system was not fit for purpose and was making people’s lives a “total misery”.
Matthew Reed, chief executive of Marie Curie, said: “The inquiry’s findings are clear – the current system is not fit for purpose and the ‘six-month rule’ does not make sense. Yet, every day it is making terminally ill people’s lives a total misery, when they should be focused on living well for as long as they can.
“Whether somebody with a terminal illness has six months to live or longer, their needs are the same – it cannot be right to deny them access to the financial support they need based on a ‘made-up policy fudge’ invented decades ago.”
Researchers at the Marie Curie Palliative Care Research Department at University College London found that clinicians are often unable to predict exactly how long those living with terminal illnesses will survive.
They found that one in four cases saw doctors give inaccurate prognoses when using the question: “Would you be surprised if this patient died within the next x months?” as their approach.
Doctors told the APPG it is “very difficult” to estimate how long someone with a non-cancer condition has to live.
And St Christopher’s Hospice said more and more time was being taken up by attempts to ascertain how long someone had left.
The APPG report also said some doctors feared patients may be negatively impacted by learning they were expected to live less than half a year, and found evidence of a “generalised fear” of being held to account if a patient did live longer.
The report recommends that the Government scrap the six-month rule and adopt a new definition, based on incoming law in Scotland, allowing clinicians to use their own judgment to certify whether a patient is terminally ill.
A majority of GPs told the Royal College of General Practitioners that they would support this change, the report said.
It added that it was “greatly concerned” to learn that DWP officials were overturning and challenging clinicians’ judgments.
Out of 21 health professionals, 13 told the Motor Neurone Disease Association their prognosis had been challenged, while the National Association of Welfare Rights Advisers said the DWP would often notify the claimant instead of the doctor if an application was rejected.
The group said: “This practice is unjustifiable, gives lie to the DWP’s assertion that it treats the claims of terminally ill people with ‘the utmost sensitivity and care’, and should be discontinued immediately.”
Thirteen young adults who were paralysed in sporting or traffic accidents have had movement in their hands restored through pioneering nerve transfer surgery, enabling them to feed themselves, hold a drink, write and in some cases return to work.
Natasha van Zyl, the Melbourne-based surgeon who leads a research programme that has given some people their lives back, said the patients were able to use their hands and extend their arms from the elbow. “Extending your elbow allows you to push a wheelchair better, helps you to transfer in and out of a car, reach out and do something in space in front of you, shake someone’s hand.
“It allows you to reach above your head, which you need to be able to do because the world is designed for standing-up people. So you can switch a light off, you can get something off a shelf. Hand function is everything you use your hand for. You would just need to tape your hands up for five minutes to experience how frustrating life would be without your hands, without your fingers.”
The team at Austin Health in Melbourne, Australia, have been using combinations of tendon transfers, which result in greater strength for the muscle, and nerve transfers, which improve dexterity. Their findings from their work on 13 patients are reported reported in the Lancet medical journal. Van Zyl says she hopes they will encourage the thousands of people who become tetraplegic (also known as quadriplegic) by losing the function of all four limbs to seek surgery which could help them live more normal lives.
Nerve transfers are not new, she says, but had not been successful in spinal cord injuries. Van Zyl had been using nerve transplants in brachial plexus injuries, where neck and shoulder nerves have been pulled out of the spinal cord, and wondered why they did not try them to restore function in patients who had been paralysed. In 2014, she and her team designed a triple nerve transplant.
The first patient had “really fabulous results from the surgery”, she said. “Word got out and we were fairly inundated with people wanting nerve transfers.”
They set up a structured project to track everything they did and all the outcomes, which has resulted in the Lancet paper. They recruited 16 young adult patients who had become tetraplegic after motor accidents, falls, sports or diving. Two of them did not continue with the programme and one died, unconnected to the surgery.
Nerves were taken from shoulders and transplanted into paralysed muscles in the arm so that they bypassed the injury and connected back up to the spinal cord. Ten of the patients had nerve transfers to one arm and tendon transplants in the other. Four nerve transplants in three patients failed, but the team say tendon transplant is then available as a backup.
Two years on from surgery, the patients have significant improvements in their hand function, particularly enough pinch and grasp strength to carry out most tasks of daily living.
Van Zyl says she gets strength and inspiration from her patients. She tells of one who had been “a very high-functioning individual. He was in a boating accident – he was thrown out of a boat. He was the CEO of three different companies he’d set up and he was working seven days a week and he went from that to a head on a stick, as he described himself.
“He told me, after he’d had his surgery and had enough of a result from it, that he had decided that he would try this surgery but if it didn’t work he was going to exit. He didn’t want to live any more. His was a very high level of injury but he got enough out of what we did for him, which was a combination of tendon and nerve transfers, for him to start to work again at home, to be able to take a young family member out to the movies independently and handle the money, get the tickets, get the popcorn.”
One time Van Zyl video-called him and saw people milling about in the room. She asked if his carer could do something for her. “He said: ‘That’s not my carer – that’s my assistant. I’m working. These are people working for me.’
“In his case it was life-saving, not just life-changing.”
She and her team have now done about 160 nerve transfers. Between 250,000 and 500,000 people every year have a spinal injury, more than half of whom become tetraplegic. There are surgeons who could help at least some of them, says Van Zyl. “We are all dedicated to this cause and absolutely love this work. All around the world there are surgeons – we all know each other – some of them waiting for patients, frustrated that they don’t get enough.”
They cannot do anything for someone as badly paralysed as Christopher Reeve was, but they can help the most common spinal injuries that cause tetraplegia, called C5 and C6 – damage to the fifth and sixth cervical (neck) vertebrae. She hopes the published paper will encourage rehabilitation teams to suggest surgery and patients to seek it out.
In a commentary published with the paper, Dr Ida Fox from Washington University in the USA writes: “Stem cells and neuroprostheses could change the landscape of regenerative medicine in the future. For now, nerve transfers are a cost-effective way to harness the body’s innate capability to restore movement in a paralysed limb.”
Case study: ‘I wouldn’t hesitate to do it again’
Paul Robinson, 34, from Australia’s Gold Coast, said the surgery had been “life-changing”.
Robinson fractured his C6 vertebra in a dirt bike accident in early 2015, a month before his 30th birthday. It left him a tetraplegic. He lost function in his hands, and was only able to manage a slight grip. Picking up objects like a cup to drink required squeezing two hands together.
“Even something light like an empty can would really be a struggle for me to grab with one hand because all I had was slight tenodesis grip, which is when you pull your wrist back and your fingers automatically close,” Robinson said.
After a few months in the spinal unit at Brisbane’s Princess Alexandra hospital, one of his health workers mentioned the research being done by Dr Van Zyl into tendon and nerve transfers.
In December 2015, he received a nerve and tendon transfer on his right side and nerve transfer on his left side. Recovering from the surgery was difficult, both physically and emotionally, because it erased progress he had made toward rehabilitation. But once he started rehab again, he forgot about the setback.
“You spend so much time in rehab learning to do things with what you have got … and then all of a sudden you go almost back to the start,” he said. “I think I was four weeks [post surgery], not being able to move my arms, so it was back to ‘Can someone give me a drink of water, can someone change the channel?’ I was more or less bedridden for a while.
“It was probably about six months and I started really noticing the results, and then after about eight months it was like: ‘Oh wow, I didn’t even notice I was doing that.’
“I was picking stuff up and I couldn’t have done that previously. It is a slow healing process but I wouldn’t hesitate to do it again if I was in the same position. The amount of difference it’s made to my daily life makes that recovery beyond comparison.”
Robinson can now lift up to 9kg with his right hand and 4kg with his left. The restored grip function means he is able to live independently and has recently moved out of his parents’ home.
“It means I am able to pull apart and put my wheelchair in and out of the car, pick things up off the ground, hold a drink with one hand,” he said.
Using his wheelchair is also easier now he can rely on his increased strength to manoeuvre on uneven ground. He travels to Brisbane several times a week to play wheelchair rugby and regularly meets other people who have received similar injuries who might benefit from the same surgery.
“There might be someone else out there who doesn’t see that this is an option,” he said. “It has made such a big change to my life; hopefully it can help someone else too. It’s really a life-changing thing.”
A disabled R&B fan has been guaranteed a seat to see one of her favourite acts after being warned she may have to stand.
Virginie Assal had bought a seated ticket months ago to see Janelle Monae perform at Castlefield Bowl in Manchester.
But she found out a week ago her place had become “first come, first served”.
The gig’s organiser said it had now reserved seats for all those who indicated they require them.
The Manchester International Festival (MIF) website said those who had already expressed they needed “access seating”, or a wheelchair space, would receive a wristband allowing them into the access area.
Ms Assal has scoliosis, a serious back condition, which means she cannot stand for long periods. She also cannot risk being in a crowded area in case she gets hurt. She does not use a wheelchair but is mobility-impaired.
The 25-year-old had booked her ticket to see the popular US singer, who’s just played Glastonbury, in December last year. At the time, she requested a seat away from the crowd, and was told “that was fine”.
The situation changed last week. She looked at the festival’s website and saw only wheelchair users could reserve spaces. Seats for mobility impaired people could no longer be assured.
When Ms Assal messaged MIF, it replied: “We will have an accessible seating area available for the performance. As we have limited capacity, we’d advise turning up early as the seating area will be first come first served.”
How early was early, she asked the organiser?
“[A]s soon as doors open,” she was told.
It emerged only 12 reservable places were to be made available, for wheelchair-users only. A further 40 access seats were to be made available but could not be reserved.
Ms Assal complained to the festival organisers about its change of policy. She felt she could not have attended the gig with confidence in case she couldn’t sit down. And, if she did get a seat, she would feel bad for potentially stopping another disabled person from sitting.
However, after the BBC reported her story on Tuesday, MIF apologised. It clarified that Ms Assal would be guaranteed a seat. It was sorry if the advice given was “at any point was confusing”.
Ms Assal received the reassuring news in an email on Tuesday evening from MIF’s chief executive, John McGrath.
In a statement, MIF said it considered access a “key priority”.
“[W]e work hard to ensure our events are as accessible as possible. MIF does not manage this particular space and although it is a standing event, we have worked closely with the external team to ensure there are accessible positions.”
It asked that everyone booking tickets for an MIF event “make us aware of their access requirements when they book”. It says it has increased the capacity of Castlefield Bowl to meet demand.”
Ms Assal said she was “on the whole… pleased”.
“It’s better. My general thing I asked for was for everybody with needs to get seats.”
The DWP have now corrected, at least in part, a misleading letter which deliberately discouraged GPs from issuing fit notes to employment and support allowance (ESA) claimants who need them in order to claim benefits.
Last week we revealed that a revised version of the ESA65B letter went live from 3 June 2019.
Its aim was to correct the previous version, which had been strongly criticised because it no longer told GPs that they should resume providing fit notes if a claimant appealed against a decision that they were fit for work.
Thanks to Daphne at Rightsnet for obtaining a copy of the letter and to Mr B for telling us about it.
The latest revision now states that:
Following your patient’s Work Capability Assessment, we’ve decided they are fit to do some types of work, but this might not be the same as they have done before. This means you no longer need to provide fit notes for their Employment and Support Allowance (ESA) claim.
Providing fit notes in the future for their ESA claim
Subject to your clinical discretion you may issue further fit notes in the future to your patient if:
their condition gets worse
they develop a new disability or health condition
they ask you for evidence for a reconsideration or appeal against our decision.
There are concerns that the letter still lacks clarity and that some GPs will not read past the sentence telling them not to provide fit notes.
The full text of the letter is below.
REVISED ESA65B LETTER We no longer need Statements of Fitness for Work (known as fit notes) for
your patient as they are fit for work Dear Doctor Patient’s name: Address: Date of birth: Following your patient’s Work Capability Assessment, we’ve decided they are fit to do some types of work, but this might not be the same as they have done before. This means you no longer need to provide fit notes for their Employment and Support Allowance (ESA) claim. Providing fit notes in the futurefor their ESA claim Subject to your clinical discretion you may issue further fit notes in the future to your patient if:
their condition gets worse they develop a new disability or health condition they ask you for evidence for a reconsideration or appeal against our decision.
Helping people back into work We know most people are better off in work, so we are encouraging your patient to find out what type of work they may be able to do with their health condition or disability through focused support at their local Jobcentre Plus. Their work coach will take your patient’s illness, health condition, or disability into account when setting work requirements. Your patient has agreed that we can tell you about the decision. We’ve sent your patient a summary of their Work Capability Assessment outcome. We may need to contact you again about your patient’s disability, illness or
health condition in the future. If you have any questions about this letter or you need it in Braille, large print, or audio please call us on the number at the top of this letter. Thanks for your help. Yours sincerely, [name] Manager
The Lords economic affairs committee said this would restore access and quality of social care services in England to pre-austerity levels and relieve unsustainable pressure on unpaid family carers. A further £7bn a year should be spent to extend NHS-style free personal care to all by 2025, to be paid for out of general taxation.
The chair of the cross-party committee, Lord Forsyth, said it was time for government to stop “faffing around” and properly fund a system that was riddled with unfairness and left people enduring real suffering. “Our recommendations will cost money, but social care should be a public spending priority,” he said.
The committee’s report comes amid growing concern at the state of adult social care after a decade of austerity. The outgoing Tory chair of the Local Government Association, Lord Porter, recently warned that vulnerable people would die as a result of the continuing failure to properly fund social care.
Forsyth, a former Conservative government minister, told the Guardian the fairest and most efficient way to meet the £15bn cost was via taxation. “I’m a Thatcherite Tory: I support reducing tax and controlling public expenditure. But this is the minimum requirement to provide a decent standard of care in our country.”
The committee said 1.4m older people were denied the care they needed as a result of cuts, means tests and rationing, while others received extremely basic “clean and feed” levels of care. Many as a result were housebound and unable to fulfil everyday tasks like washing or going to the toilet.
With growing demographic pressures – by 2040 a quarter of the UK population will be over 65 and there will be thousands more working age adults with severe disabilities – social care funding reform was an urgent priority, the committee said.
At least 17 white papers, green papers and official reviews of social care funding have been published in the past 20 years, the committee estimates, none of which have led to meaningful reform. The latest promised government green paper has been delayed at least six times over the last 18 months.
The committee questioned the point of publishing yet another report. “Let’s not have a green paper,” said Forsyth. “If you have to, have a white paper, and write a cheque to the local authorities. Let’s stop faffing around and get on and do it.”
Politicians had been too quick to denigrate proposed changes as a “death tax” or a “dementia tax” to gain electoral advantage, thwarting reform, the report said, adding that there must be cross-party agreement on a way forward on adult social care and have an honest conversation with voters about how it is to be paid for.
The committee’s members include former Labour chancellor Lord Darling, former Tory chancellor Lord Lamont, former Treasury permanent secretary Lord Burns, ex-cabinet secretary Lord Turnbull and former Talk Talk boss Lady Harding.
Free personal care was introduced for over-65’s in Scotland in 2002, giving recipients help with daily tasks such as bathing, dressing, personal hygiene, going to the toilet, and meal preparation. Numbers of people receiving care doubled as a result, but it ultimately saved taxpayers’ money by preventing costly hospital admissions.
However, free personal care should not include the costs of accommodation, which would be met as now by the individual, the committee said, but government should explore introducing a cap on individuals’ financial liability.
Without urgent action to address social care funding, much of the burden of caring for vulnerable individuals would continue to fall on family and friends. Most unpaid carers were women, the report said, with 63% of female carers aged between 50 and 64 caring for at least 50 hours a week.
A Department of Health and Social Care spokesperson said: “We have given local authorities access to up to £3.9bn more dedicated funding for adult social care this year, and a further £410m is available for adults and children’s services. We will set out our plans to reform the social care system at the earliest opportunity to ensure it is sustainable for the future.”
Between the many scene-stealing moments that have been shared from Stormzy’s emotional Glastonbury headline set, you might have seen a video of Tara Asher on your timeline. An audience-shot clip of Asher, a British Sign Language interpreter, went viral, showing her gunfinger-happy, head-spinningly dextrous visualisation of the grime MC’s rapidfire lyrics.
For Asher, who also interpreted Stormzy at Glastonbury in 2017, it was just another night’s work. “There’s not many interpreters who interpret music and do festivals,” she says. “There’s a shortage nationally.” And there’s even fewer who specialise in grime. “I’ve listened to grime since the Risky Roadz days, since the very beginning, so it’s easier for me, because I understand the context, the slang, all that stuff.”
Only 4 British Sign Language interpreters in the UK are specialists in Grime. Tara Asher signed Stormzy’s Glasto set for deaf festival goers. She rehearsed each song for a day. This is joyous. She LOVES her job. Have a watch please. @BritishSignBSL@deafzone1#glastonbury19pic.twitter.com/OkeW9irIoG
— 📻 Colin Paterson 📺 (@ColinGPaterson) June 29, 2019
Alongside Asher, Stormzy’s set was also interpreted by Stephanie Raper. Overall, 20 interpreters volunteer their time with Glastonbury’s DeafZone to make sure that key Glastonbury performances are accessible for deaf audiences. With each song taking about a day’s preparation to learn, it’s a mammoth job – made even more difficult by the fact that interpreters don’t have access to setlists before shows. This means they usually look up an artist’s recent sets online, and spend weeks prepping all the songs that might be played. And if the artist goes off-script and plays something new? “We just have to go with it,” says Raper. “It’s about the beat, the words, the melodies, the feeling, the tempo change – it’s just trying your best to relay all that.”
For most interpreters, the work begins with immersing themselves in an artist’s world. Paula Cox, who interpreted Janet Jackson’s set, explains that ahead of a gig, she “listens constantly – in the car, in the morning, in the evening, when I’m cooking my dinner. Part of the research is looking on YouTube, and seeing how the artist moves to this song, and what their mood is. If they’ve got a certain way they hold themselves, you want to try and match that.”
For Benjamin Gorman, who interpreted his very first set at Glastonbury for Bastille, preparation is more intricate. Gorman is deaf himself and performed with the support of other volunteers giving visual cues. “I had to read as many lyrics as I possibly could,” he explains. “Also, when you sign in BSL, it’s not the same grammar and structure as spoken English, so you need to think about how to change it, but not change it so much that you depart from the original lyrics.”
Part of what makes such translations consistently go viral is the sheer emotive power of the performances, stemming from the visually expressive nature of the language. Angela Dawes – who provided BSL interpretation for Christine and the Queens, Billie Eilish, and Loyle Carner – finds it easier to translate when she connects emotionally with a song. “Having an artist you can relate to – that really helps. We want to put that across in our interpretation: how you feel when you listen to a song.”
As well as covering main performances, DeafZone also provide “roaming” interpreters who support deaf people accessing other aspects of Glastonbury, such as getting a massage or watching a debate. But DeafZone’s work isn’t only about helping deaf people – it’s also about raising awareness of BSL as a language in the hearing community. Volunteer Abigail Gorman (who is deaf herself) explains that the DeafZone tent provides free BSL classes to all Glastonbury-goers. “We talk about deaf history, culture, language. We don’t want people to just come in and learn a few signs – that’s tokenistic. We want people in the future to campaign on our behalf, be our allies and support us.”
When videos such as the one of Asher interpreting Stormzy go viral, it’s a double-edged sword: while it raises awareness of the need for BSL interpreters at concerts, interpreters are keen to not be the focus of attention. “It all comes back to providing access for the deaf person,” says Dawes. “As much as we may enjoy the lovely aspect of performance, first and foremost we’re here because we’re showing that this is a language. An equal language.” Her co-interpreter Erin Hutching agrees: “One of the misconceptions is that interpreters help deaf people. [We] provide a really important service both ways. It’s to help the hearing person as well, because they don’t know sign language.”
The best outcome of these viral videos would be more support for interpreters at festivals – who could benefit from access to setlists and an in-ear audio feed – but also, most importantly, improved access for the deaf festival-goers. The impact of that access can be immeasurable. “The first time I came to Glastonbury, I was a punter, and I didn’t expect anything,” says Gorman. “I’d been to other festivals with limited access – whereas here, it’s inclusive. I’m not ostracised. Festivals need to be more deaf aware. They need to employ deaf people to find out what deaf people need. I face a lot of barriers. There are no barriers here at Glastonbury.”
Virginie Assal, who has a serious back condition, booked the ticket in 2018 so she could sit down, but the seats have now become “first come, first served”.
She has to arrive early to get a seat at the 4 July concert at Manchester International Festival (MIF).
MIF said access was a “priority” and it had made adjustments to accommodate as many disabled people as possible.
However, it has emerged only provisions for wheelchair-users are guaranteed.
Ms Assal, who has a serious back condition and is the diversity and liberation co-ordinator at the University of Manchester, which focuses on inclusivity, says this is the first time a concert in the UK has not been accessible to her.
The 25-year-old said when she booked her ticket to see the popular US singer, who’s just played Glastonbury, she was asked what she required – a seat away from the crowd – and was told “that was fine”.
The situation changed last week when she looked at the festival’s website and saw there were only provisions for wheelchair-users to reserve spaces and that seats for mobility impaired people could no longer be assured.
Ms Assal messaged MIF. In messages seen by the BBC, it replied: “We will have an accessible seating area available for the performance. As we have limited capacity, we’d advise turning up early as the seating area will be first come first served.”
Ms Assal responded: “So booking an accessible ticket doesn’t guarantee me to be in the accessible area? What time should I arrive?”
She was told the accessibility area has “unreserved seating” and is limited so she should arrive “as soon as doors open”.
Ms Assal queried what happened if more people needed seats than were available.
“They won’t get a seat,” MIF responded.
“It made me upset,” Ms Assal said. “How do I enjoy the concert now? I have scoliosis so my back isn’t straight. It means I can’t stand for a long time statically and I’m always worried in a crowd that I might get pushed and fall and really hurt myself.
“I really need a seat because it means I’m in pain if I don’t have one and I don’t really want to burst into tears because of the pain, or sit on the floor because of the pain, or put myself in a vulnerable position.”
Ms Assal says she’s now not sure whether to attend the concert at Castlefield Bowl, or not.
“I don’t want to arrive early and get a seat and then find another disabled person has been turned away. I’d prefer them to have my seat.”
Chris Fry, managing partner of Fry Law, which specialises in equality and human rights, says operating a “first come, first served” policy can be a breach of the Equality Act 2010.
Under the act, any organisation supplying a service to the public has a duty to make reasonable adjustments to ensure that a disabled person’s experience is as close as possible to that of someone without a disability.
Mr Fry said it was the duty of the service provider, in this case MIF, to ensure the venue is accessible.
He said: “It’s fairly well established that whilst ‘first come first served policies’ appear to offer a level playing field, if the outcome creates a systemic disadvantage to disabled people then they are a form of indirect discrimination and are unlawful.
“Whilst it’s justifiable… for there to be a limit to the number of wheelchair spaces for evacuation and safety reasons, there’s no reason why disabled people who do not use wheelchairs should be restricted to seating in those spaces.”
In a statement to the BBC, MIF said: “MIF does not manage or run the venue. We have made reasonable adjustments within the constraints of an outdoor standing event, with limited capacity space, to accommodate as many disabled people as possible.
“We are not offering a ‘first-come, first-served assistance policy’ as suggested, we offer the same opportunity to book tickets and select access preferences to everyone.”
MIF said it has 40 seats available for use in its access area at Castlefield Bowl.
Thousands of deaf children could miss out on seeing Toy Story 4 because more than half of cinemas aren’t showing it with subtitles, the National Deaf Children’s Society says.
The film, which features a deaf child wearing a cochlear implant among its characters, hit cinemas across the country on Friday, 21 June, but the charity fears that deaf children will be excluded by the lack of subtitled screenings.
According to figures from Your Local Cinema, of the 688 cinemas showing Toy Story 4 in its opening week (June 21-27), just 301 offered performances with subtitles.
Opportunities were still very limited for deaf children and their families, with those 301 cinemas offering just 477 subtitled screenings of the film between them, a tiny fraction of the tens of thousands of performances across the UK this week.
In addition, many subtitled screenings took place at times which made it difficult for working families with school age children to attend, and most cinemas also only had one subtitled showing, offering little choice to deaf cinema-goers.
The news comes after a study from the National Deaf Children’s Society revealed deaf children are only half as likely to go to the cinema as their hearing friends.
As a result, the charity is calling on all cinemas to embrace new technology and offer multiple showings with subtitles, making the film accessible to deaf people of all ages.
Helen Cable, who leads the National Deaf Children’s Society’s work with children and young people, said:
“It’s appalling that deaf children aren’t being offered the chance to enjoy the magic of the movies like every other child. Imagine what it must feel like when all your friends in the playground are talking about a film, but you can’t go and see it yourself.
“It’s easy for cinemas to provide subtitles, but the majority have decided not to and it will mean thousands of deaf children are excluded.
“Cinemas across the UK need to do so much more to let deaf children access these films. The technology exists, so it’s time UK cinema chains started taking this issue seriously and gave all deaf children the chance to enjoy the defining films of their childhood.”
Duncan Milne of Aberdeen, whose partner Fiona and children Ailsa, 7, and Fergus, 4, are all deaf, said:
“We went to see Toy Story 4 as a family and it was great to see a kid with a cochlear implant in it, but it’s frustrating to realise that many deaf people won’t be able to see it because there are so few subtitled showings.
“One time we had to travel late one night to a different city to see a film we were told would be subtitled, only to find it wasn’t. We complained and were told the screening had been moved and had already been shown at 4pm that day.
“I find that it’s near impossible to find subtitled screenings of films at sensible times. The cinemas must think that deaf people don’t work or have families by some of the timings.
“Hearing people can just pop out to the cinema and see the film they want, but deaf people don’t have that luxury. We have to jump through hoops just to find a screening we can all enjoy as a family. It shouldn’t be this way.”
The level of underpayments of personal independence payment is the highest ever recorded for any benefit, the National Audit Office (NAO) has revealed in its latest report on the DWP this week
The NAO qualified its opinion of the DWP’s accounts, as it has done every year since 1988.
But this year it found that the levels of both underpayments and overpayments by the department were at their highest ever level, since a new system of accounting was introduced in 2005.
The NAO reports that once state pension, where fraud and error is very low, is removed from the equation, the estimated level of overpayments has increased to 4.6% (£4.0 billion), from 4.4% (£3.7 billion) in 2017-18.
Underpayments have increased to an estimated 2.2% (£1.9 billion) of benefit spending, from 2.0% (£1.7 billion) in 2017-18.
The highest level of overpayments is for universal credit, with a startling rate of 8.6% – the highest for any benefit since tax credits in 2003-04. Claimants failing to declare income and earnings correctly was the main cause of overpayments, according to the DWP.
Most alarming, from the NAO’s point of view, was the discovery that the DWP expects overpayments to continue to rise over the next six years, mainly due to the roll-out of UC
The estimated rates of PIP overpayments rose from 3.1% in 2017-18 to 3.5% in 2018-19.
Meanwhile, PIP underpayments rose from 3.7% to 3.8%.
The DWP claims the main cause of both overpayments and underpayments is claimants failing to report changes in their condition. They insist that in 85% of cases it is the claimant who is at fault for underpayments.
The NAO report says it understands that the DWP “is focusing on telling claimants when they need to notify changes, but it has some way to go to ensure that claimants provide timely information so that their Personal Independence Payment claims remain accurate.”
But with hundreds of millions a year being saved through underpaying PIP, and the DWP happy to place almost all of the blame on claimants, it’s hard to see the situation changing anytime soon.
The government was accused of having “ignored” people with a disability after admitting that “no formal assessment” had been conducted, despite fears over a possible lack of medical supplies and health workers if Britain leaves the EU without a deal.
The revelation came in a reply to a parliamentary question from Labour MP Jo Stevens.
Responding, Caroline Dinenage, the care minister, said: “No formal impact assessment has been conducted by the department of the effect on people with disabilities of the United Kingdom leaving the European Union without a deal.”
Last year, Matt Hancock, the health secretary, said he could not guarantee that no one would die if there is a no-deal Brexit.
Fears have also been raised that restrictions on freedom of movement after Brexit could prevent the UK recruiting enough carers and health workers from abroad.
And MPs have previously warned that the loss of the European Social Fund could be “disastrous” for disadvantaged groups, including people with a disability. The fund currently gives £500m a year to organisations in the UK that provide employment and training support for people who are often neglected by mainstream providers.
Ms Stevens told PoliticsHome that the response to her question “shows just how unprepared the Tory government is for leaving the EU without a deal, and how reckless the Tory leadership candidates have been in advocating one”.
She added: “People with disabilities will be deeply concerned about their futures and will properly ask why the government and the candidates to be prime minister have ignored them.”
Marsha de Cordova, the shadow minister for disabled people, said: “Many disabled people face the prospect of losing out on vital medicines, funding and support as the result of a catastrophic no-deal Brexit.
“But the government is shamefully treating disabled people as collateral damage to the chaos it has created. It is disgraceful that the government continues to ignore the effect of crashing out of the EU on millions of disabled people in this country, some of whom already face destitution as a result of brutal austerity measures.”
A government spokesperson said: “The government is committed to protecting the rights of disabled people and those with health conditions, supporting them into work and to live independently.
“We are preparing for all eventualities to ensure claimants continue to get the right support.”
Their lawyers will argue the government is leaving councils in England unable to fulfil their legal duties to give these children the support they need.
Judges will have to decide whether Send funding decisions have been lawful and may order a government rethink.
The government said it was investing significantly into high needs budgets.
Parents of children with learning difficulties have long had to fight for the support they need with their education.
But austerity budgets and changes to the system, in 2014, have meant the huge increase in demand for support has not been matched with an associated rise in funding.
In the past financial year, eight out of 10 councils in England spent more than their allocated budgets for high needs, a BBC News investigation found.
And school leaders have complained their school budgets are being used to plug gaps in special needs funding.
Solicitor Anne-Marie Irwin, of public law specialists Irwin Mitchell, said this was the first time the government had been taken to court over its special needs funding decisions, although two local authorities have faced High Court challenges.
Specifically, the court is being asked to rule whether last autumn’s Budget was set lawfully.
‘Typical stories’
Three families with children with special needs, from Birmingham, North Yorkshire and East Sussex, are fighting the case. They are all being supported by campaign network Send Action.
Their lawyers say their stories are typical of the many families around the country who are struggling to access the services their children need to support their education and learning.
Among those taking part is Nico Heugh Simone – a 15-year-old, from East Sussex, who has autism, anxiety and other related conditions, which means he requires special care to remain in mainstream school.
His mother, Lorraine, 57, said Send children deserved the same opportunities as their peers but her family had faced “numerous issues trying to ensure he can get the support he needs”.
“We feel like we have been left with no choice but to take this action,” she said.
“We are hopeful the High Court will recognise the national emergency that is being created by the lack of Send funding and order action to be taken to redress this issue.”
Another teenager, whose case will be heard by a High Court judge, is Benedict McFiggan, 14, from Scarborough, North Yorkshire, who has struggled to access support for post-traumatic stress disorder, anxiety, depression and chronic insomnia.
‘Held to account’
North Yorkshire County Council initially refused to give him an official assessment of his needs, known has an education healthcare assessment.
He has not been in mainstream school for nearly two years and now attends a pupil referral unit but for less than three hours a day.
His mother, Kirsty, 40, said so many councils were struggling and she was shocked at the lack of government action.
“We feel this issue is being caused at the top and are determined to ensure the government is held to account on sorting it out.”
Mary Riddell, mother of Dakota, nine, who has cerebral palsy and other disorders, has also struggled to get support for her daughter.
She said: “The situation as it is cannot continue or else Dakota and a huge number of other vulnerable children will ultimately lose out.”
A Department for Education official said: “The government’s ambition for children with special educational needs and disabilities is no different to any other child – we want them to enjoy school and achieve to their full potential.
“This is why we are investing significant funding into supporting those with more complex special educational needs – high needs funding totalling £6.3bn this year.
“It would be inappropriate to comment further until the judicial process has concluded.”
The DWP claim that they have now corrected a misleading letter which deliberately discouraged GPs from issuing fit notes to employment and support allowance (ESA) claimants who need them in order to claim benefits.
Back in March we revealed that the text of a standard letter to GPs had been quietly altered by the DWP.
In the past, when a claimant was found capable of work, the DWP sent out a letter to their GP stating that there was no need to issue further fit notes.
But the letter went on to say that the doctor would have to give their patient a new fit note if they appealed against the decision:
“. . . you may have to give your patient new medical statements if:
they decide to appeal against our decision
their condition gets significantly worse
they have a new medical condition.”
The Royal College of GPs (RCGP) subsequently called for urgent changes to be made because the letter risked endangering the health of claimants.
At the time the DWP denied that the changes posed any risk to claimants and insisted that they had consulted the RCGP and the British Medical Association about the revised wording of the letter.
Both organisations deny that this is the case.
However, last week Justin Tomlinson, minister for disabled people, responded to a written question from an MP about the issue by claiming:
“The revised version of the ESA65B letter went live from 3rd June 2019. The revised letter states clearly the circumstances in which fit notes are required including to support Employment and Support Allowance appeals, where a claimant’s condition has worsened or if the claimant has developed a new health condition or disability.”
It seems then that, after being caught out, the DWP have changed the wording back to that of the original letter, although Benefits and Work has yet to see a copy of the latest document.
The warning comes after the Care Quality Commission found that residents did not always have access to dentists and were not getting the support they needed to look after their teeth.
Its inspectors visited 100 homes caring for elderly and disabled people.
It comes as the British Dental Association highlighted a number of distressing cases of decay and neglect.
How the vulnerable are being failed
These included a blind, 93-year-old woman with advanced dementia whose dentures had become stuck in her mouth because they had been left in for weeks and her gums had grown around them.
She was taken to A&E and the dentures had to be surgically removed.
Another case involved a woman with learning disabilities who was found to have huge amounts of decay and gum disease, including one tooth that had virtually rotted away.
It was only spotted because she had stopped eating.
Charlotte Waite, from the British Dental Association (BDA), said it was distressing that some of the most vulnerable people in society were being failed in this way.
“The teeth of many care home residents are being left to rot thanks to a system that fails to view their oral health as a priority.
“We require nothing short of a revolution in the approach to dentistry in residential homes.”
What is the problem?
The CQC report – based on visits to 100 care homes – highlighted both a lack of access to dentists and insufficient support provided by care home staff.
Around half did not provide training to their staff on oral health care, while nearly-three quarters of individual care plans did not cover oral health sufficiently.
One in six care homes also said they did not assess residents’ oral health on admission.
One in three said they could not always access dental care.
This was mainly related to the lack of specialist dental services that visit people in the community rather than expecting them to attend clinics.
Research by the BDA has found the NHS is only paying for a fraction of the services it needs.
Around eight per cent of the general population is classed as “severely limited”. Not all of these will need a specialist dental service, but many will.
However, figures obtained by the BDA under the Freedom of Information Act have suggested only one to two per cent of this population are given access to such services.
Kate Terroni, from the CQC, said the NHS, care sector and dentists needed to work together to address the problems.
She said oral health could not be treated as an “afterthought” as problems with teeth could leave people in pain, unable to eat and lacking confidence.
‘When someone says, ‘with a handicap like yours,’ what they are really telling you is that you shouldn’t expect too much out of life,” says Lucy Jones. “People try and curtail your movements and abilities.”
This is a big year for the British painter, with two major exhibitions about to open in the UK. Now 64, Jones was born with cerebral palsy, a lifelong condition affecting movement and coordination. For most of her career, she hasn’t wanted to talk about her disabilities. “I am still not terribly happy with people putting me into a strange box of ‘disability’, quite often it seems invasive.”
In her art, however, she has never avoided the subject – and she has never been more confident of who she is than in her latest paintings, currently on show at Flowers Gallery, London, and soon at a big new retrospective in Leicester, exploring three decades of prolific work. In a new series of self-portraits, Jones paints herself as never before – full bodied, in lucid lines and celebratory colour. It’s a new phase for the artist who not only has cerebral palsy but severe dyslexia and experience of depression, too.
When out with her “wheelie” – as she fondly refers to the frame she uses to help her walk – Jones is used to being stared at. Her paintings allow her to reverse the gaze and stare back, putting us in her shoes. For Jones, disability is something the rest of the world needs to learn to deal with, rather than something she should be expected to explain. Paintings are a form of protection.
Though the cerebral palsy affects her body and makes painting an immense physical effort, Jones’s greatest challenges have come as a result of dyslexia. She was only diagnosed in her 30s. In a painting completed this year, Just Looking, Just Checking on You, Jones challenges the viewer to decipher words reflected in a mirror; not unlike what she goes through when she reads. “Watching You Looking at Me,” the text shouts at you, once decoded. Jones admits that it is deliberately “quite aggressive … In my self-portraits I reflect back other people’s projections.”
Art gave Jones the opportunity to think, without the prison of words. An early aptitude for creativity lead her to study at Byam Shaw (now Central St Martins), then at Camberwell School of Art – where she earned a first – and then at the Royal College of Art. When she finished her masters there in 1982, she won a scholarship for painting at the prestigious British School of Rome.
Though she thrived academically, when Jones returned to London in 1984, she struggled to have her work accepted by any commercial gallery. “They were probably thinking, ‘oh go away, you wobbly lady’!” Jones quips with a wit that often finds its way into the titles of her paintings; a coping mechanism, but also one of the compelling aspects of her work.
In 1985, aged 30, and following a particularly difficult year, a turning point for Jones came when she was picked up by art dealer Angela Flowers. She has been with the gallery ever since. In May, the new works she will present prove just how far she has come in three decades: unflinching self-portraits and jubilant landscapes, easily as good as any Hockney. She used to paint London’s bridges, but since relocating to Shropshire 15 years ago, she has been inspired by her garden and the countryside.
Painting landscapes are a physical feat for Jones: she kneels on the ground to do sketching, and back at her studio, a converted barn, a trolley supports her as she moves to paint over her canvases. Her balance is fragile – she paints on the floor, on her hands and knees – “it’s less far to fall!”
This close physical contact with the earth give Jones’ landscape paintings a perspective that is completely unique; her paintings allow her to explore the world in another way. “The landscape gives me a freedom of mind, air and space, exactly opposite to painting myself or portraits. I need to be outside to live, to think and just be.”
Painting has made Jones visible – to paint herself back into the world. It has also had a transformative effect on her life. “My relationship with myself has changed over the years, especially with my self-portraits, which used to be more about the depressive outlook I had on life. I have moved through many phases of engagement with the world. Now my work is moving more towards commenting on how people might look at me or someone else I paint.”
At her exhibitions, Jones will reveal her recent paintings of other people – her first subjects are the men who have played an influential role in her personal and professional life. They have never been seen before. There’s an imposing portrait of her late father; a tender view of her husband, Peter; her close friend, the social scientist Tom Shakespeare, her gallerist Matthew Flowers – and a vulnerable-looking Grayson Perry, gripping a mug of tea. The Perry portrait is titled The Seeing Orator – another dash of Jones’s incisive irony.
It’s hard to think of any contemporary artist working in the UK now who has overcome as much adversity as Jones. So why hasn’t she received more attention?
“I think people are quite nervous about dealing with somebody like me,” she suggests. Diversity might be firmly on the cultural agenda, but there is still a long way to go. Yet to overlook her humane and timeless work would be foolish: she is an empathetic observer of the human condition, and of human vulnerability – the things that make every one of us a bit “wobbly”.
Lucy Jones, Landscape and Inscape, New Work is at Flowers Gallery, London, until 6 July. Lucy Jones: Awkward Beauty is at Attenborough Arts Centre, Leicester, 27 July to 6 October. The artist’s book, Awkward Beauty, is published by Elephant in association with Flowers.
The family of a woman who died from motor neurone disease is calling for an end to a disability benefit assessments for the terminally ill.
Susan Hill was 63 when she died, 18 months after she was diagnosed.
She had applied for personal independence payment (PIP) to pay for carers and underwent what her husband called a “quite degrading” assessment.
The Department for Work and Pensions said it is looking into how it can improve its processes.
Motor neurone disease (MND) is a degenerative condition which can leave patients without the ability to speak, move or eat.
Mrs Hill, who lived in Bargoed with her husband John, had worked with patients with MND and other terminal illnesses in her work as a dietician for the NHS.
She started suffering falls and slurred speech, and suspected she had the condition before diagnosis.
Mr Hill bought and adapted a bungalow for her needs, but she never had the chance to move there before she died in 2018.
He described his wife of over 30 years as “special” and said “she loved her work, she cared for people”.
Her daughter, Laura, 26, said she “didn’t expect it to be so fast”.
“First she lost the ability to talk, and then it was eat and then move and then to the point where she was bed-bound really, with hoists.”
She added: “She was really independent. I think that’s the worst thing about motor neurone disease, your independence is taken away.”
Miss Hill has undergone an assessment herself as she is blind, but said it was different to her mother’s situation.
“Mine is life-changing, but I’ve got the time to go through and wait for the money, whereas terminally ill people haven’t,” she explained.
During his wife’s face-to-face assessment for PIP, Mr Hill said she was asked to do things like balance on one leg.
“It was a bit degrading, certainly in Sue’s position,” he said.
Miss Hill has started a petition to end these assessments for the terminally ill.
“For any terminally ill person… I think there should be no assessment,” she said.
“A medical assessment should be enough.”
PIP is available to help with some of the extra costs of long term ill-health or disability.
There is an option for people to be “fast-tracked” and not have a face-to-face assessment if a medical professional says they are not expected to live for more than six months.
Mr Hill said this “didn’t seem to be an option” for his wife.
The Motor Neurone Disease Association has said this criterion is difficult to fill by MND patients, as the speed of the condition varies from person to person.
The charity is campaigning for a change in the law, so that terminally ill claimants are not excluded from the fast-track process.
It said: “A person living with a terminal and progressive condition such as MND should be able to access the fast-track claim process under the special rules for terminal illness, which is far more appropriate for their needs than the slow and burdensome standard claim process.”
A spokesperson for the Department for Work and Pensions said: “Terminally ill people can get their claims fast-tracked and access benefits without a face-to-face assessment.
“We’re looking at how we can improve our processes and in the meantime we continue to work with charities – including MND Association – to help terminally ill people access the support they need.”
Readers, Same Difference is 12 years old today. My tiny little piece of the World Wide Web has been here for 12 whole years!!!
It has changed quite a bit in 12 years. It has changed so much that it has even changed its name!!!
12 years ago, I was a University student who had just discovered political blogs. I was inspired by an online friend who is a political journalist, who had just started a blog.
I had a passion for writing and a passion for journalism. But when I started Same Difference, then called Remembering The Ability In Disability, I had no idea that I would develop a passion for politics. It took me quite some time to realise that I was being political, just by taking an interest in Disability Rights.
Over the last 12 years, Same Difference has covered many stories. Some have made me laugh out loud. Others have made me cry. Some have made me celebrate. Others have made me scream in frustration.
I have always focused on celebrating the amazing things that disabled people can do, with support. Over time, the site’s focus has been forced to shift. I have tried to cover more serious issues, particularly the UK’s welfare reforms.
From the very beginning, I have tracked the posts that get the most interest from you, my readers. I still read every comment. I make every possible effort to cover stories that you want to read, and I promise that I always will.
I have never forgotten that I wouldn’t be here today without you, readers. Your support means more to me than you will ever know.
THANK YOU ALL. Here’s to the next 12 years of Same Difference!!!
More than 1,500 children with special educational needs and disabilities (Send) are without a school place in England, with some waiting up to two years for provision.
The figures, collated by Newsnight, cover 46 English councils (25%), which suggests the real figure may be higher.
One mother told the programme her son had been “squeezed out” of school as a “quick cost-cutting solution”.
The government said responsibility lay with local authorities.
Local authorities do not routinely publish data but a series of Freedom of Information requests made over the past six months show 1,580 children with education and health care plans (EHCPs), which used to be called statements of special educational needs, have no education provision.
The highest numbers came from Stoke-on-Trent (164 children) and Kent (348).
Alex Palmer, six, who has autism, has not had a school place for two years, having been excluded just weeks after starting at a mainstream school in 2017.
“It just became too overwhelming for Alex and within five days of being at school full time, I had that that phone call that I knew was coming… there’s issues and that ultimately your son is facing exclusion,” his mother, Rachel, said.
“Alex shut down completely. He used to write his name and draw and paint and then following how emotionally traumatic he felt that experience was… he wouldn’t hold a pencil, he wouldn’t write”.
And children such as Alex could be just the tip of the iceberg. They are the ones who have an EHCP – but not all children with Send do.
Last year, there were more than 285,000 children with EHCPs in England – but the number of Send children is higher.
Parents can spend months, or even years, trying to get their child assessed for an EHCP and in the meantime there is no statutory requirement for local authorities to keep a register of these children.
In Birmingham, where Alex and Rachel live, a Freedom of Information request revealed 66 children with EHCPs were without education provision- but sources told the BBC’s Newsnight programme there were actually about 250 Send children waiting for a school place. Birmingham Council said it did not “recognise” this latter figure.
The Children’s Commissioner for England, Anne Longfield, was not surprised by the numbers across England.
“They reaffirm my concern that this is actually really widespread and there’s a lot of children in this situation… lots of children and parents I’ve met who are spending 18 months, two years looking for that right school, or pinballing between applications to different schools,” she said.
‘We’re full’
Send provision is split between specialist and mainstream schools.
Earlier this year, the government announced an additional £250m to support high needs and an extra £100m for new special school places – but the Institute for Fiscal Studies estimates the funding gap for Send education will hit £1.6bn by 2021.
Charlotte Stubbs, the head teacher at Uffculme Special School, in Birmingham, which supports children on the autistic spectrum, said: “This year, we had 19 spaces available for September 2019 [in Year 7] – we had 86 requests for placement.
“In our primary provision, specifically at Years 1 and 2, the class sizes are about seven or eight pupils per class size.
“We’ve had 130 referrals for primary placements this year and we’re full”.
Send places at mainstream schools are also coming under pressure.
The first £6,000 of support for a Send child has to come from the school’s core budget and, put simply, pupils who need specialist help typically cost more than the funding they bring in.
Schools such as Kings Heath Primary, in Birmingham, which has a high proportion of pupils with complex needs, have long subsidised Send support from other parts of the budget. But because of financial pressure, they may have to close places for pupils such as Aaron.
“We don’t want this to happen,” the 10-year-old told Newsnight. “If this doesn’t stop, then people will get split up from each other, friendships will be broken and I really don’t want that to happen, because I like my school and what it’s doing for me.”
The Department for Education said EHCPs had meant more than a quarter of a million children with complex educational needs “are receiving the tailored support they need to thrive”.
“We know that a number of children with EHC plans are waiting for a place in school, having moved to a new local authority area, or waiting for their first primary school place,” a spokesman said.
“Local authorities are responsible for ensuring that there are sufficient school places for all children in their local area.
“We encourage local authorities and providers to work collaboratively so the right range of provision is available for children.”
The Wales Council of the Blind (WCB) said assessors were using specialist equipment incorrectly, leading to false results.
Capita, which assesses Personal Independence Payment (PIP) claimants, said its assessors are “fully trained”.
The UK government said assessments only include vision tests where “appropriate and relevant”.
But those living with severe sight loss have told BBC Wales Live sight chart tests were done in their home, without distances being measured, or factors like lighting and the standard of peripheral vision being taken into account.
The WCB said PIP assessors are not qualified to carry out such tests, and they should only be done by optometrists or ophthalmologists.
The charity said the tests were “meaningless” and had caused anxiety.
“If somebody has a false reading or their vision has been portrayed as better than it actually is, that may affect their eligibility, or have a negative impact on the eligibility, of their award,” explained Owen Williams from the WCB.
“We’ve got significant evidence that this is happening to a number of people.
“The impact this is having is quite extreme around anxiety emotionally and around peoples’ financial security.”
“It’s knocked me back”
Image caption Simone Lloyd says she has lost about £200 a month following an assessment
Simone Lloyd, from Maesteg, has a brain tumour on her optic nerve, which cannot be removed.
She has no sight in her right eye, and very little in her left eye.
Simone had her benefits cut by about £200 a month following her PIP assessment.
She is unhappy with the way a sight test was conducted during a home visit and thinks the outcome might have been different if her test had been done by an optometrist in a clinical environment.
“It’d normally be, ‘Straight ahead, look at the chart’, and the lighting would be different,” she said.
“But we were at an angle, she just held a chart up, didn’t ask about the lighting or the angle we were at.
“It didn’t seem right.
“It’s knocked me back, way back.
“I became very depressed, my anxiety was sky high and I felt I had to prove I was worthy and needed the help.
PIP benefits began replacing Disability Living Allowance in 2013.
It is paid to people who have a “long-term health condition or impairment”.
There are two parts to the benefit, a daily living allowance and mobility allowance, with upper and lower rates for each.
The minimum payment is £23.20 per week, the maximum is £148.85.
Capita has the contract to carry out assessments for people living in Wales and the Midlands.
Atos assesses people elsewhere.
A Capita spokeswoman said: “Our assessors are fully trained to determine how a partially-sighted person’s disability impacts their ability to function.
“We do not seek to reach a diagnosis, and do not make decisions on the level of award given.”
A spokesman for the UK government’s Department for Work and Pensions said it did not test claimants who are registered as being severely visually impaired, and those with no sight.
“For claimants with some sight the health professional will use any expert evidence that is provided and evidence gathered throughout the assessment,” added an official.
“If no expert evidence is provided the assessment may involve a vision test if appropriate and relevant.
“The test would consist of checking near and distance vision using appropriate charts which all assessors are trained to use these.”
The UK government said 67% of visually impaired people reassessed when moving from the old disability allowance to PIP “are getting a higher value award as a result”.
One of these positions was reserved for a fashion disability champion who would, the DWP claimed, “open industry doors”. Five new champions were appointed on schedule; in the fields of brand and design; countryside and heritage; products and spaces; technology; and web accessibility. The champion for the fashion industry was absent.
The DWP explained that during a seven-week recruitment process the vacancy was advertised in the fashion trade press, directly to fashion brands and on social media. No applications were received, and the department is now reviewing its recruitment procedure. Yet for many of those with disabilities, this initial outcome will be disappointing.
“I don’t feel that the doors have ever been open for people with disabilities,” says the TV presenter and activist Sophie Morgan, who presented Channel 4’s coverage of the 2016 Paralympic Games. Despite some fashion retailers, including River Island and Primark, making what Morgan says are “great strides”, the overall experience both online and in-store “remains a negative one” for disabled clothes shoppers.
Morgan spearheaded the Mannequal campaign, which urged fashion retailers to include mannequins in wheelchairs as part of window displays, to act as a much-needed “sign to disabled consumers that this particular retailer has considered, and will attempt to meet, their needs”. But, she says, more should be done.
Due to her activist endeavours and role in the television coverage of the Paralympics, Morgan may well have been a prime candidate to take on the job of fashion disability champion. Despite this, she had never heard about the initiative.
The Team GB Paralympian Chloe Ball-Hopkins, who collaborated with Asos in 2018 to develop festival wear designed to accommodate the needs of wheelchair users, agrees that fashion is letting disabled shoppers down.
She sees “a few companies making good ground” but still finds that when she goes clothes shopping she will often “struggle to reach half the clothes on the racks due to the height”.
Ball-Hopkins hadn’t heard of the position being advertised either, and was similarly surprised it hadn’t attracted interest.
But Justin Tomlinson, the minister for disabled people, doesn’t think the position remains unfilled due to a lack of effort on the DWP’s part, although he does feel that the British fashion industry is “missing a trick by not doing enough to cater to disabled consumers”.
Although fashion for disabled people has been overlooked thus far, a champion for retail was appointed in 2018. This, alongside campaigns such as Mannequal, may have led to retailers improving physical accessibility to shops – but Morgan has found, when shopping for clothes, that a warm welcome rarely awaits people with disabilities.
“We may just be lucky enough to gain physical access to the retail space,” she says. “But that doesn’t mean we feel welcome and able to fully engage.”
She likens the experience of clothes shopping to the scene in Pretty Woman when Julia Roberts’ newly affluent character returns to a boutique in which she was once humiliated to flaunt the commission the sales assistants will never receive. “She comes back with the immortal line: ‘Big mistake … HUGE,’” Morgan recounts. “I feel like saying that so often! We have money, we want to spend it the same as anyone else, why stop us?”
This is an area where activists and the DWP agree. Both parties say businesses aren’t doing enough to earn the “purple pound”, the £249bn disabled consumers spend each year.
“If brands want to capitalise on the disabled consumer market, they must first improve representation of disabled people in fashion,” says Tomlinson. “Whether that’s in advertising campaigns or on the catwalk.”
Submissions are now open for BBC Ouch’s fourth storytelling event hosted by Laura Lexx at the 2019 Edinburgh Festival Fringe.
The BBC is giving disabled people and people with mental health difficulties the opportunity to submit a true story about an unusual, complicated or funny encounter based on the theme Lost and Found. Successful applicants will get the chance to work with a top comedy script producer and perform on the main stage in front of an audience at the Edinburgh Festival Fringe.
Laura Lexx, who has appeared on BBC One’s Live at the Apollo and has previously won Best MC at the Comic’s Comic Awards, will present BBC Ouch: Storytelling Live 2019 on August 5th at the BBC’s Big Blue Tent.
Laura Lexx said: “I took part in the show last year to share my experience of dealing with anxiety and depression. I remember standing backstage worrying that I wasn’t anxious enough to be a part of a show like this… oh the ridiculousness of worrying you’re not worried enough to be officially worried. Being there on the night was skin-tinglingly exciting watching people share stories that had never been public before, and the response afterwards to videos shared online was mind-blowing. Events like this really reach the audience they need and make a difference.”
Philip Henry, one of last year’s storytellers said: “Being part of the BBC Ouch’s event last year was an amazing experience for me, I’m so glad I took part. After the show aired on BBC Two I was contacted by people from all over the world and the feedback was 100% positive. From casual viewers who enjoyed the comedy of the story, to fellow sufferers who saw themselves in my situation and could empathise with my plight, I was overwhelmed with the messages of congratulations and support. Since then I’ve received funding to make a short film version of the story I told, so it’s helped my career as a writer and film-maker too. I’m so glad BBC Ouch gave me the platform to raise awareness of Crohn’s in such an entertaining way.”
Damon Rose, Editor of BBC Ouch, said: “This show is the highlight of our year. Our aim is to find talented disabled people and people with mental health difficulties, and ask them to share their entertaining and often funny stories about their unique experiences. We want to share these stories far and wide and where better to start than on the BBC stage at the Edinburgh Festival.”
A press release from The Department For Transport:
People with hidden disabilities will soon be able to access Blue Badge parking permits, thanks to the roll out of new guidance today (Saturday, June 15).
For drivers or passengers with dementia, anxiety disorders or reduced mobility, anticipating difficulty travelling, such as trouble finding a parking space, can result in a build-up of stress on top of the stress of the journey itself.
The new guidance, which represents the biggest change to the scheme since the 1970s, will offer a lifeline to people who often find road travel difficult by providing better access to work and other amenities, while also helping combat loneliness by helping them stay connected to family and friends.
The expanded scheme coincides with the launch of a new task force to toughen up enforcement and help councils tackle fraudulent use of the badges.
Transport Secretary Chris Grayling said:
“As a society we don’t do enough for people with hidden disabilities.
“I hope this change to Blue Badge guidance will make a real difference to people’s lives.”
At the end of 2018, the Local Government Association estimated that the theft of Blue Badges had risen by 45 per cent in 12 months and was up six-fold since 2013.
The review will look at ensuring Blue Badges are used correctly and improving public understanding so that those with hidden disabilities can use the badges with confidence.
Minister for Disabled People Justin Tomlinson said:
“It’s unacceptable that people with hidden disabilities still face discrimination when using disabled facilities like parking spaces.
“Extending the Blue Badge scheme is a watershed moment in ensuring those with hidden disabilities are able to travel with greater ease and live more independent lives.”
To help councils with the expected increase in applications, the department has agreed with the Ministry of Housing, Communities and Local Government to provide £1.7 million in the first year of the programme.
The Department for Transport has been working with specialists to expand the eligibility criteria for the badges, which will now include people who cannot walk as part of a journey without considerable psychological distress or the risk of serious harm.
The Blue Badge scheme already means people with physical disabilities can park closer to their destination than other drivers, as they are less able to take public transport or walk longer distances.
The extension of these badges to those with less visible conditions was announced last summer following an eight-week consultation on widening the eligibility criteria. It is an important part of the Government’s drive for greater parity between physical and mental health.
Jane Harris, Director of External Affairs at the National Autistic Society, said:
“The changes will make a huge difference to thousands of autistic people and their families across England – helping them to go out in the way many others take for granted.
“Just leaving the house is incredibly difficult for many autistic people – and involves detailed preparation. Some autistic people have no concept of the dangers of the road while others are so anxious about plans going wrong, like not being able to find a parking space, that they don’t go out at all. Having a Blue Badge will be life-changing and help many to reduce loneliness and isolation.”
A task group will be set up with key organisations to gather ideas and evidence on how to improve the consistency of council enforcement to tackle fraud and misuse.
The review will also look at ensuring that there is greater public awareness of which groups are eligible for a badge, when it can and cannot be used, and how to surrender the badge when it is no longer needed, for example if the badge holder dies.
While the new criteria will give clear and consistent guidelines on Blue Badge eligibility for the whole of England, not everyone with non-physical disabilities will qualify for a badge. It will be up to the relevant local authority to decide if an applicant meets the eligibility criteria, as is currently the case.
Last year, the Government set out its plans to improve accessibility across all modes of transport in the Inclusive Transport Strategy which launched on 25 July 2018. The strategy aims to make the UK’s transport network fully inclusive by 2030.
A blue plaque has been put up at the home of disability rights advocate Robin Cavendish MBE to honour his achievements.
Mr Cavendish was 28 when he was paralysed from the neck down after being struck down by polio in 1958.
Despite being given a prognosis of three months, he went on to live until the age of 64. The plaque will be at his former home in Oxfordshire.
Mr Cavendish’s life was immortalised in the 2017 film Breathe.
The father-of-one, from Derbyshire, contracted polio while in Kenya and became dependant on a mechanical respirator.
Despite doctors’ warnings he would not survive out of hospital, Mr Cavendish was discharged in 1961, setting up home in Drayton St Leonard, south Oxfordshire.
‘He’d be proud’
Spurred by a desire to be more mobile, he developed the first wheelchair with a built-in respirator, with the help of his friend Prof Teddy Hall.
He went on to raise funds so the machines could be available to others.
Mr Cavendish oversaw the creation of Netley Waterside House in 1972 – a complex on Southampton Water providing a holiday getaway for disabled people. He died in 1994.
His son Jonathan was at Sunday’s ceremony to see the blue plaque hung on the Old Rectory residence, home to his parents for 33 years.
“My father would be very proud and my mother, who is very much around, is thrilled,” he told the BBC.
“It’s a great token of appreciation from everybody for all his work.”
Mr Cavendish’s life was the subject of the film Breathe, where he was played by Oscar-nominated actor Andrew Garfield, and his wife Diana was portrayed by Golden Globe-winning and Oscar-nominated Claire Foy.
This is quite possibly the worst assessment story I have heard so far. And readers, I’ve heard a lot of assessment stories! It deserves to be published as a post of its own and shared far and wide. It was left as a comment on this site over the weekend. We are not linking back to the post it was left on, so that our reader can remain anonymous.
I went for an esa assessment and was accused of making my dead son up as it was mot in my old g.p who was struck off three years prior. They asked if I was sure about my son dying. They did not care about my illnesses, more concerned with who lives with me then when I mentioned my other adult son Luke, she replied with, is this the ill son Tha you claim is dead. I was upset and crying by this point. I was then asked to crouch down I said I can’t my legs will not support me and its too painful. They put down I refused to take part. By the end of two hours of interrogation I was physically upset and crying not only because of what they kept saying but also because I was in pain. But if you leave they say you do not comply. I was shaking when I left and the assessor looked at me like I was something on her shoe and was unmoved by my upset state. My son died when he was eleven years old and you never get over the loss of a child and to be accused of making it up is unnecessary cruelty and purposely done to upset me. And throughout the whole assessment she kept alluding to me pretending my other ill son is the one im actually claiming to be dead when he is alive. What does any of my sons living or deceased have to do with a medical assessment anyway. I was not claiming for esa because of emotional state or depression. I have ehlers danlos, a collagen affected genetic disorder. Plus I have scar tissue problems, chronic fatigue, constant pain, I have scar tissue pain also from a major surgery, I haemorrhage and carry transexamic tablets plus I have multiple allergies, diabetes, back pain and bronchial asthma. Apparently I am making all this up too. As they stopped my esa and said I’m fit for work.
The Dutch team said even people who have not been diagnosed with epilepsy might be affected.
Their study was prompted by the case of a 20-year-old, with no history of epilepsy, who suddenly collapsed and had a fit at a festival.
The Epilepsy Society said festivals should limit lighting to the recommended levels.
Epilepsy is a condition that affects the brain. There are many types, and it can start at any age.
Around 3% of people with epilepsy are photosensitive, which means their seizures are triggered by flashing or flickering lights, or patterns.
The Health and Safety Executive recommends strobe lighting should be kept to a maximum of four hertz (four flashes per second) in clubs and at public events.
‘Life-affirming’
The researchers studied electronic dance music festivals because they often use strobe lighting.
They looked at data on people who needed medical care among the 400,000 visitors to 28 day and night-time dance music festivals across the Netherlands in 2015. The figures included 241,000 people who were exposed to strobe lights at night-time festivals.
Thirty people at night-time events with strobe lighting had a seizure, compared with nine attending daytime events.
The team, led by Newel Salet of the VU Medical Centre in Amsterdam, writing in BMJ Open, said other factors could increase the risk of seizures.
But they added: “Regardless of whether stroboscopic lights are solely responsible or whether sleep deprivation and/or substance abuse also play a role, the appropriate interpretation is that large [electronic dance music] festivals, especially during the night-time, probably cause at least a number of people per event to suffer epileptic seizures.”
They advise anyone with photosensitive epilepsy to either avoid such events or to take precautionary measures, such as getting enough sleep and not taking drugs, not standing close to the stage, and leaving quickly if they experience any “aura” effects.
Mr Salet told BBC News: “If a person has no predisposition for epilepsy, then factors like strobe lighting will not have any effect. However, most people are unaware of this predisposition they might have: more than a couple of cases explicitly reported this to be the first time they experienced an epileptic fit.”
Clare Pelham, chief executive at the Epilepsy Society, said: “The festival season has become something of a rite of passage. We would encourage festival organisers to at least warn visitors that they are using strobe lighting so that festival-goers can decide whether it will be safe for them to attend before buying their tickets.
“But it would be really life-affirming, in these days when we aspire to inclusivity, if organisers could do the responsible thing and keep the strobe lighting at a rate that should not pose a risk.
“The festival season is all about having a good time, but that should include everyone together, in a safe and supportive environment.”
Giving evidence to the work and pensions select committee, the minister for family support, Will Quince, apologised for a memo his department sent to the committee last month and said it “did not very well reflect my views on this issue”.
The memo dismissed evidence that universal credit was a cause of increased numbers of women turning to sex work as anecdotal. It said the phenomenon was influenced by a range of factors, from drug addiction and the rise of AirBnB to EU immigration.
Quince told the committee he had changed his views after hearing accounts from four women who gave evidence of how impoverishment related to universal credit issues had led them to take up escort and brothel work.
“Those very brave testimonies of the young women who have gone through the most horrific of experiences gave me a better understanding through their lived experiences. What it showed me more than anything is we need to better understand this area,” he said.
A transcript of the private committee hearing in May included a testimony from M, a brothel worker. She said the fact that drug and alcohol drove people into survival sex workdid not mean that universal credit had not caused “a really big influx”.
She said: “It is particularly bad with universal credit because we have seen these huge waits, but the whole welfare system is stacked against us and it is pushing people into survival sex work.
“It is the long wait, it is the payments in particular that I think are really dangerous because when we apply for things like this we are in crisis already, like we don’t have the ability to wait, and sex work is the only real job you can go out and earn money that night.”
T, a care worker, who went into escort work after using food banks during a six-week wait for her first universal credit payment, said: “It is horrible to say, but it is the easiest thing to keep us girls alive.”
Another witness, K, said she had worked out she would be £200 a month worse off on universal credit. “I will sell my body. I want to tell this committee that there are a lot of girls out there just like me,” she said.
The committee also heard an unexpectedly positive, if qualified, endorsement of the recent report by the UN rapporteur Philip Alston, who last month called austerity cuts the “systematic immiseration of a significant part of the British population”.
Amber Rudd, the work and pensions secretary, responded at the time by saying the report was politically biased. She alleged that Alston did not do enough research, having only visiting the UK for 11 days, and said the government would complain to the UN.
Donna Ward, the Department for Work and Pensions (DWP) senior civil servant responsible for children, families and disadvantage, told the committee chair, Frank Field, that it had fact-checked Alston’s report, which had in passing referred to a rise in survival sex.
“He made a lot of good points. It was factually correct,” she said. “I think where the secretary of state took issue with it, and where I as a civil servant can’t be involved, was the political interpretation of a lot of what’s happened.
“But in terms of the facts, in terms of austerity, cuts to local government, in terms of the reliance that we have on the labour market and the risks we face if there is a recession – all of those things were really good points that we have taken on board, and we should take on board.”
An A&E consultant, a psychiatrist, and two junior doctors swap notes on being disabled in the medical profession.
Emergency medicine consultant Dr Cieran McKiernan speaks on the perils of self-diagnosis. He lost his leg after failing to treat a blister which became a 5cm-sq hole in his foot.
Trainee GP Dr Hannah Barham-Brown’s wheelchair means she’s regularly mistaken for a patient, while Dr Emily Burns spotted one patient’s ‘diagnosis’ of Query Malingering – a euphemism for faking it – was actually Ehlers Danlos syndrome, a rare condition she has herself.
Dr Caroline Walker says she hasn’t got to go far to find doctors who, like her, have mental health difficulties.
The foursome chat about the ups and down of the medical profession, the ambition to embrace diversity and how working less than full-time hours could be beneficial to all junior doctors.
Produced by Emma Tracey. A full transcript is available here.
Helen Purdon’s life was turned upside down in September 2017 when her application for personal independence payment (PIP) benefit was rejected. Purdon, 47, had been on disability living allowance (DLA) for 10 years, following a diagnosis of epilepsy, which means she has seizures every 10 to 15 days. She is unable to work and assumed her transfer to PIP would be seamless. But she was wrong. “It was unreal. My DLA stopped, which was around £400 a month. I didn’t get any money at all for months,” she says. “We couldn’t afford to put petrol in the car, we were living off pasta and beans.” Purdon, who is from Irvine in North Ayrshire, decided to appeal against the PIP decision.
It took more than a year, but in October 2018 a tribunal found that Purdon was entitled to PIP, awarding her £119.90 a week and backdated payments of £5,700.
Purdon’s case is all too common. According to the latest figures from the Department for Work and Pensions, more than half of existing epilepsy patients and two-thirds of new claimants are being denied disability benefits.
PIP was introduced in England, Scotland and Wales in 2013, replacing DLA. The benefit is supposed to cover some of the additional costs of having a long-term health condition, and is available to people in or out of work. It is worth up to £87.65 a week to meet daily living needs, plus up to £61.20 a week for the mobility element, depending on assessment.
But since PIP was introduced, 65% of claims from people with epilepsy who did not have DLA were rejected, while 54% of those in receipt of DLA were turned down for PIP, the second-highest refusal rate of all health conditions and double the national average. Of those who challenged the decision 78% won on appeal. According to Epilepsy Scotland, which obtained the figures, the benefit assessment system is flawed because it fails to take account of fluctuating conditions like epilepsy. Claims assessors focus too heavily on the type and number of seizures a person has, while ignoring other symptoms like memory impairment, confusion, anxiety and depression.
Frances Brown, Epilepsy Scotland’s welfare rights officer, says: “About 70% of my work is PIP-related. Since 2017 we have had to double our workforce to cope with demand and have recovered £1m in unpaid benefits, including PIP.”
Being denied PIP brings financial hardship but also damages mental health. “We’ve had numerous people tell us that they don’t want to be here any more – that they have had enough,” says Brown. “It’s that feeling of not being believed – of not being listened to.”
Epilepsy charities in England and Wales are also reporting soaring demand for help. Daniel Jennings, senior policy and campaigns officer at Epilepsy Action, says the number of people contacting their helpline about PIP rocketed by 123% between 2016 and 2017. “Many people use that benefit to travel to work on public transport, as a lot of people with epilepsy can’t drive. If people lose that money, they lose the one thing that might give them their one bit of independence,” he says.
An early-day motion, signed by 34 MPs, expresses “serious concern” at the number of people with epilepsy being denied PIP, and “alarm” at rejection rates. They want the government to make the system fairer for people with epilepsy.
The figures are just the latest in a litany of problems with PIP. Disability rights organisations and patient groups have widely campaigned against the PIP process, which a former top civil servant described as Kafka-esque in its complexity when his own application was rejected. Last year a cross-party committee of MPs concluded the system was failing a “substantial minority” of claimants; the process was undermined by basic errors, insensitivity and ignorance about people’s conditions. The criticisms prompted key changes to PIP guidance.
In November 2017 and again in June 2018 the DWP issued amended guidance, following a successful legal challenge, which found that government policy had been “blatantly discriminatory” against people with mental health conditions. This has resulted in an increase in the mobility element of the benefit for some epilepsy claimants. Even so, nearly half of claims since November 2017 were still turned down.
In theory, things should improve for epilepsy patients in Scotland, as the Scottish government intends to reform PIP when responsibility for the benefit is devolved next year, with changes coming in 2021. Scotland’s social security secretary, Shirley-Anne Somerville, says: “We will be replacing PIP with disability assistance for working-age people, a new person-centred benefit. We will be working to get decisions right first time, supported by a reformed assessment process, delivered by Social Security Scotland, not the private sector. We will reduce the need for face-to-face assessments, but, where these are necessary, we will provide people with choice and flexibility over their appointment. Our new system will also provide for the needs of people with fluctuating conditions like epilepsy.”
PIP has not been devolved in Wales but the Welsh government has repeatedly called for the system to be overhauled. A government spokesman says: “We will be carrying out research into the implications of devolving parts of the benefits system to Wales. This will include looking at the Scottish model.”
Charities in England also want a reformed system. Phil Lee, chair of Epilepsy Action, says: “We are looking at what’s happening in Scotland very closely; it’s an opportunity to learn from mistakes and put them right. Hopefully, we will see a better system in place in Scotland which the rest of the UK can model – Scotland is leading on this.”
In a statement, the DWP said 27% of people with epilepsy get the higher level of PIP support compared with 6% under DLA. “In November 2017 we updated our guidance, which will increase entitlement for a number of claimants, particularly those with conditions such as epilepsy.” It is now identifying existing claimants who may be entitled to more PIP support.
Back in Irvine, Purdon is finally getting her life back on track. “I feel a lot less stressed. We’ve got money for the house and we don’t have to worry about food bills. It also means I can give my daughter pocket money again – having to say ‘no’ to her for all those months was heartbreaking.”
Case study – Murray Goulder
HR professional Murray Goulder, 39, from Crawley, West Sussex, knows firsthand just how difficult it is to qualify for PIP if you have epilepsy. Goulder takes 20 tablets a day to reduce the risk of seizures, which come without warning and bring mental “absences”. Each episode can last from a few seconds to three minutes. He has four or five seizures a month, but they are unpredictable – one weekend he had 90.
“I have almost walked off train platforms before, without knowing,” he says. “I get tired very easily and terribly forgetful – my memory is in tatters – and my mood can be drastically effected. I also have constant headaches.”
Goulder applied for PIP when his DLA – worth £174 a month, typically spent on public transport and medication – ended in November 2017. His application was rejected but was finally granted this February on appeal: he was awarded £468 a month with £6,608 in back claims. He says: “It caused a lot of stress and made me feel like I was a liar. It meant I didn’t have enough money for pursuing my hobbies like going to concerts and the theatre.”
EastEnders is working with one of the most renowned autism support groups in the world on the Carters’ new storyline.
In Tuesday’s (June 11) episode, Mick (Danny Dyer) and Linda (Kellie Bright) were told during a medical appointment that their son Ollie could have autism, but will need to undergo an extended assessment for a definitive diagnosis.
The upcoming weeks will see the Carters begin the autism assessment process, and in order to ensure authenticity, EastEnders writers have been working with the National Autistic Society.
EastEnders executive producer Jon Sen has described this upcoming storyline as the latest example of the soap’s commitment to “ground-breaking stories that resonate with the nation”.
“When Mick and Linda start to worry about Ollie’s behaviour, they face various challenges as they search for the answers necessary to help their son,” Sen explained.
“EastEnders has been privileged to work closely with the National Autistic Society to accurately depict the pressure and struggles that can be felt by parents as they begin this journey.”
Jane Harris of the National Autistic Society said that the organisation is “absolutely delighted” to collaborating on a storyline that will bring the reality faced by many families to light.
“We jumped at the chance to be involved because we recognised that it was a fantastic opportunity to help millions of viewers understand more about the autism assessment process and what families go through in order to get a diagnosis,” she said.
“There are over 700,000 autistic people in the UK and most people know someone who is autistic, whether it’s a friend, classmate, colleague or family member. Yet only 16% of autistic people and their families feel the public understand autism and half of autistic people sometimes don’t leave the house because they’re afraid the public won’t understand them. So it’s hugely encouraging to see more TV dramas representing storylines about autism in their work.”
Labour MP Debbie Abrahams has asked the Equality and Human Rights Commission (EHRC) to investigate the possible cover-up by the DWP of documents relating to the deaths of claimants, Disability News Service (DNS) has revealed.
John Pring at DNS has been waging a campaign for years to expose previously secret ‘peer reviews’ into the deaths of claimants. He has also uncovered and highlighted coroners letters to the DWP warning of concern over some deaths.
DNS has for some time tried to discover whether the DWP passed on information about the reviews and coroners letters to Dr Paul Litchfield, who carried out independent reviews into the work capability assessment (WCA).
The DWP have now finally admitted that no such documents were given to Litchfield, even though it is clear they would have been extremely relevant to his work.
The DWP’s only excuse is that Litchfield did not ask for them. But given that the documents were secret and he had no knowledge of their existence, this does seem a rather flimsy excuse.
Abrahams has written to the chief executive of the EHRC expressing her concern that the information was not passed on to Litchfield.
Abrahams also questioned the lack of any official scrutiny into the way claimants are treated by the DWP and its agents, writing:
“As you will be aware, there are a large number of social security claimants who have died after being found fit for work or having their PIP [personal independence payment] refused or reduced.”
Abrahams has asked for an investigation into deaths related both to PIP and WCA assessments.
Thousands of vulnerable patients in England are missing out on NHS funding for home care that they are legally entitled to, it is being claimed. Some families say they have spent nearly all their life savings on filling the gaps.
When 83-year-old Joyce Bryant became ill two years ago with viral encephalitis, it was a tipping point. The illness left her with a substantial brain injury and unable to care for herself.
“Her behaviour was just manic,” says her daughter Lyn Timothy. “She was banging on windows. She was hitting out at my dad, pulling plugs out of the sockets in the hospital ward.”
The family decided additional support was needed to enable Joyce to stay at home with her husband and applied for funding from NHS continuing healthcare.
CHC covers the cost of social care for people with complex medical conditions, if the health problem is deemed the main reason they require such help.
It exists in a similar form in Wales and Northern Ireland, where it is delivered by health boards. Scotland has different care arrangements called Hospital Based Complex Clinical Care.
‘Spending savings’
But despite clinical documents and videos showing Joyce’s “unpredictable behaviour” – those who apply are judged according to national guidelines – the family’s local Clinical Commissioning Group (CCG) found her needs did not meet its criteria.
“They said her behaviour was not unpredictable. It could be anticipated,” Lyn says, adding she is unable to understand its rationale.
Her mother is now confined to bed and has been placed on an end-of-life care register by her GP due to a deterioration in her health.
Joyce’s husband, Pete, who is in the early stages of dementia, has had to spend most of their savings on her 24/7 care needs and their funds are running out.
They are eligible for care home funding, but Lyn says the couple – who have been married for 57 years – have always wanted to stay together at home.
West Hampshire CCG said decisions in the case were taken by a panel of health and social care professionals, with input from Joyce’s GP.
“A new application for funding can be made at any time and we would be happy to provide support,” it said.
‘National scandal’
Every year about 160,000 applications are made for continuing healthcare, costing the NHS around £3bn.
Lloyd Tingley, chairman of the Continuing Healthcare Alliance, says the system is a “national scandal” denying many people the free healthcare they are entitled to.
“Some are dying before they get the care they need or are forced to sell their homes to pay for care that should be free,” he said.
Last year, the Parliamentary and Health Service Ombudsman received 496 complaints about continuing healthcare funding and investigated 196.
Labour MP Meg Hillier, chairwoman of the Public Accounts Committee, told the programme this was “just not acceptable”.
“There needs to be real political will behind this to make sure those who are eligible are getting the money they need,” she said.
Andrew Farley, of Farley Dwek Solicitors, said there were “thousands of people who have been forced to sell their houses to pay for the care in circumstances when they ought not to”.
He said many people did not know about the existence of the funding, as they had not been told about it, or had difficulties “navigating the complexities of the system”.
Suzanne Morrison’s son John has cerebral palsy and cannot use his arms or legs.
His continuing healthcare funding was withdrawn in 2009, leaving his parents battling with their local commissioning group for 10 years.
“Fighting for John has nearly broken me,” Suzanne explains.
“Watching somebody disappear, when you know it can be stopped. It’s depressing, demoralising and it encompasses every conversation I have with my husband.
“You would like to give up sometimes, but I can’t and I won’t. It’s not what we do.”
In the last month, Wiltshire CCG has concluded that John now qualifies for fully-funded care.
His parents say they now intend to claim back £300,000 from the NHS, having spent most of their savings on his care.
“I am relieved because now the three of us can have a normal life again. A family life,” Suzanne says.
‘Complex area’
Campaigners say the problem is due to funding cuts.
Analysis by the King’s Fund suggests there has been a shift towards more people receiving fast-track continuing healthcare, usually for short periods of time, rather than the standard care – which is provided for longer, and therefore more expensive.
It also noted since NHS England was given a target to cut the projected rise in cost of continuing healthcare, in 2015-16, the number of people receiving it had begun to decrease relative to population size.
An NHS England spokesman said: “Spending on continuing healthcare is increasing and it is for CCGs to manage assessments based on demand in their area.
“There is still potential, however, to make the process more efficient and effective for patients, as the majority of people assessed turn out not to be eligible.”
Julie Wood, chief executive of NHS Clinical Commissioners – the umbrella body for the 212 CCGs in England – said continuing healthcare was “a complex area”, but that CCGs were “working hard to improve systems and processes to make it better and fairer for those that need it”.
“In 2016-17, spending on continuing healthcare represented 4.3% of the entire NHS budget,” she added.
On his travels around Ethiopia he visits a studio containing paintings which were part of a wider exhibition designed for blind and partially sighted people to experience.
Senior officials travelled to Teesside to explain what changes have been made.
Ms Whiting, a mother of nine, suffered multiple physical and mental health issues including curvature of the spine and a brain cyst, and took 23 tablets each day.
Following her death in 2017, an independent inquiry found that the DWP did not follow procedures, such as telephoning and visiting Ms Whiting after she missed the appointment.
Her mother, Joy Dove, who has been campaigning for justice, said the officials told her they felt they had to apologise in person.
She said they “seemed sincere”, but “apologies mean nothing, they won’t bring Jodey back”.
Mrs Dove said: “They said ‘we really want to tell you how for each of those failings, changes have been made’.
“They said they are going to make it so you can phone up and get every consideration over the phone, instead of having to go in.
“They are going to employ people from [mental health charity] Mind, they are going to get consultants, going to train staff, they mentioned 26,000 staff.
“They kept saying sorry for that, sorry for that, but in the end I said, ‘OK are you going to put it into writing?’ and they said ‘yes’.
“I said to them, if you’re putting it in writing, please put it in Jodey’s name so our daughter didn’t die in vain.”
The Department of Work and Pensions said in a statement: “Senior officials have met with Mrs Dove to apologise again for the failings in handling her daughter’s case and discuss the lessons learnt.
“We fully accepted the Independent Case Examiner’s findings earlier this year and have since reviewed and strengthened our procedures to ensure all vulnerable claimants are safeguarded.”
Stroker, 31, won the award for best featured actress in a musical on Sunday night for her role as Ado Annie in the acclaimed, edgy revival of Oklahoma!.
The performer is paralysed from the chest down due to a car crash when she was two.
She booked her first musical theatre gig at the age of seven, when she was cast as the title role in Annie in a friend’s backyard production in a New Jersey beach town.
When she sang, she says she “felt so free”.
After graduating from New York University, Stroker was in The 25th Annual Putnam County Spelling Bee at the Paper Mill Playhouse in New Jersey, as well as The Glee Project and Glee on TV.
Stroker made her Broadway debut in a revival of Spring Awakening in 2015, becoming the first Broadway actor who uses a wheelchair.
She dedicated her win on Sunday to every child who has a disability and has been waiting to see themselves represented in theatre.
The 31-year-old has said she believes it’s high time disabled people are represented on stages and sound stages authentically, noting that one in five Americans lives with a disability.
She added that she believed she had been recognised for raising “awareness of people with special needs”.
“My parents and myself are so proud of me,” Ms Grant added.
“I want to continue to raise awareness through my modelling.”
Ms Grant has been supported in her career by her mother, Deirdre, who has helped the young model to challenge perceptions of beauty and disability.
Deirdre Grant told the Sunday News that she and her husband were “just busting with pride for our daughter Kate”.
“Whether you have Down’s syndrome or not, if you have a belief and if you work hard, have determination and have a dream, things are achievable in life.
“So that’s just Kate’s motto – she worked hard, she was very determined, she believed in herself, she knew where she wanted to go,” Mrs Grant said.
“And with that, she knew that she was representing the population with special needs and disabilities, and that drove her forward and made her stronger.”
It’s only later that you realise there is something different, and a little special, about Universo Santi, a restaurant in the southern Spanish city of Jerez.
“People don’t come here because the staff are disabled but because it’s the best restaurant in the area. Whatever reason they came for, the talking is about the food,” says Antonio Vila.
Vila is the president of the Fundación Universo Accesible, a not-for-profit organisation dedicated to helping people with disabilities join the mainstream workforce. He has also been the driving force behind Universo Santi, the haute cuisine restaurant whose 20 employees all have some form of disability.
“I always wanted to show what people with disabilities, given the right training, were capable of,” says Vila, who is a senior manager at DKV insurance. “They were not represented in the world of haute cuisine. Universo Santi has broken through that barrier.”
The 20 staff, whose ages range from 22 to 62, were recruited from an original list of 1,500. To qualify, applicants had to be unemployed and have more than 35% disability.
“I feel really lucky to be part of this,” says Gloria Bazán, head of human resources, who has cerebral palsy. “It’s difficult to work when society just sees you as someone with a handicap. This has given me the opportunity to be independent and to participate like any other human being.”
Alejandro Giménez, 23, has Down’s syndrome and is a commis chef. “It’s given me the chance to become independent doing something I’ve loved since I was a kid,” says Giménez, who lived with his mother until he was recruited.
“Working here has transformed my life. So many things I used to ask my mother to do, I do myself. I didn’t even know how to take a train by myself because I’d just miss my stop.”
A recent guest chef was Joan Roca of El Celler de Can Roca, twice voted the best restaurant in the world. Giménez said he was not daunted at coming under Roca’s orders. “I’m not afraid of anything. The only thing I’m afraid of is not knowing something. I always want to learn and here I’m learning from the very best.”
Universo Santi may soon have a star in the Michelin firmament as the Michelin Guide people have already sampled the menu which, at €60 (£53), is less than half the price of a typical menú de degustación.
“Of course they didn’t introduce themselves but we knew who they were,” says Almudena Merlo, the maître d’.
While few are as gastronomically ambitious as Universo Santi, there are several other projects across Europe where catering is giving disabled people a new lease of life. One is La Fourchette de Collserola in Barcelona, which is staffed by 20 people with a range of physical and mental disabilities. The cuisine is Mediterranean, with vegan and kosher options.
In 2010 Brownies&downieS launched in the Dutch town of Veghel as a café run by people with Down’s syndrome and other disabilities. It was so successful that the venture became a franchise, with 53 branches in the Netherlands, Belgium and South Africa.
Another similar project is the One Eighty Restaurant in Portadown, Northern Ireland, which was established in 2011 and trains 16- to 22-year-olds with learning difficulties to work in the hospitality business.
The Jerez restaurant takes its name from Santi Santamaria, chef at the Michelin three-star Can Fabes in Catalonia until his sudden death in 2011. Can Fabes closed shortly afterwards but his family wanted to carry on his name and culinary tradition and were keen to support the Jerez project.
The family’s enthusiasm attracted the attention of Spain’s top chefs, among them Martín Berasategui, Roca and Ángel León, all of whom have contributed recipes and their time as guest chefs at the restaurant.
Disciples of Santamaria helped establish the kitchen, whose equipment was transferred in its entirely from Can Fabes, and several of the dishes on the menu de degustación are Santamaria originals.
Since it opened in October 2017, Universo Santi continues to win plaudits for its cuisine. Speaking at the restaurant, Roca said cooking was about humanity and was a way of integrating people. “It gives me great satisfaction to see it realised in a project such as this,” he said.
The Japanese government has promised that all hotel rooms that are converted to make them accessible for wheelchair visitors to the 2020 Paralympics will now remain accessible as a legacy of the Games.
The pledge comes after the Guardian revealed in April that British Paralympic officials were stunned when hotels near their training camp in Yokohama, south of Tokyo, demanded they pay to make rooms accessible – and then pay again to convert them back afterwards.
One senior figure said the problem had been a “huge headache” for more than 18 months until the authorities in Yokohama, part of the Greater Tokyo metro area, finally agreed to help. What made the issue harder to solve is that it was beyond the remit of the Tokyo 2020 organising committee or government. Rather, it was down to individual hotels – many of which did not see the social or economic benefits of providing more accessible rooms.
However, the Japanese government insists the issue is now “obsolete”. Jun Mitarai, part of the cabinet secretariat that co-ordinates Olympics planning, said: “After the refurbishments, the hotel rooms will not go back to the original state. That is an agreement between the Yokohama city and the hotels. The rooms will be left as a legacy.”
Mitarai said the government was also addressing concerns from the International Paralympics Committee (IPC) about the lack of accessible rooms in Tokyo by introducing new legislation to ensure all new hotels cater more for people with disabilities, with at least 1% of rooms accessible if the building has more than 50 rooms.
He said it is also launching a subsidy programme to help existing hotels make refurbishments, and producing a “operational manual which describes how to help those with impairment” for smaller hotels and inns.
“The hotels and inns have already started training their staff based on the manual,” he added.
Mitarai also had a message for existing hotels that were reluctant to renovate for accessibility. “Hotels shouldn’t view this as a cost but rather as an opportunity,” he said.
“Japan is already an ageing society and it is going to be an even more ageing society in the future. And also the percentage of people with impairment is said to be around 7% – but those who are travelling are still much much less. So we want people on the management side of hotels to see this as a business opportunity and expand the number of accessible rooms.”
When asked if he hoped the Tokyo Paralympics would change people’s perceptions of disabled sport and disabled people much in the way London 2012 did, Mitarai smiled before replying in English: “I completely agree with you.”
Part of the problem is that hotel rooms in Tokyo have smaller spaces than most large cities, with narrower doors sometimes making it harder for wheelchairs to enter. There are few bathrooms with grab rails and bath tubs. Some people also cite societal reasons as a factor, with many Japanese not realising it is a problem because there are fewer wheelchair users in Tokyo than in most cities.
Yuriko Koike, the governor of Tokyo, said she is determined that more be done to change attitudes and accessibility.
“The Olympics can only be successful if the Paralympics are also a success,” she said. “And part of the ultimate success of the 2020 Games must be creating a more barrier-free society in Tokyo – including widening hotel rooms and entrances for disabled people and making toilets, buses and other forms of transportation more accessible.
“In order to do that I am working with the hotel and tourism industry and raising some funds to make that happen for Tokyo,” she added. “One of the legacies that I am aiming at is that anyone can easily and comfortably visit the city.”
Koike said organisers had also created a “Paralympic Passport” to encourage local people to watch and try the events.
“There are 22 different sports that take place in the Paralympics and this passport can be used so that you can get a stamp each time you see, play, or cheer for any games in the Paralympics,” she said. “And just last week I achieved all 22. I have seen, participated in, or cheered for all 22.”
Koike is particularly found of boccia, a sport she started playing after seeing it at the Rio Paralympics. “As soon I got back to Tokyo I established a team, and when the former head of the IPC [Sir Philip] Craven came to Japan we had a showdown,” she said, smiling. “I was merciless. I took him down!”
I grew up in a Britain that said life would be full of promise for disabled people like me. We might not have conquered the media and corridors of power, but – unlike generations before me – by the 1990s we were no longer hidden from sight. Grim words such as “crippled” and “retarded” were no longer part of everyday speech. Charity tins that until recently symbolised the scraps handed out to us were now accompanied by concrete rights – from the groundbreaking disability civil rights law of my childhood to the welfare state’s tailor-made benefits and services for disabled people.
Progress, though, is rarely as permanent as it appears. Nearly 20 years later, in the spring of 2013, I watched as David Cameron’s coalition government launched what would become an unprecedented assault on disabled people: from the bedroom tax to the rollout of “fit for work tests”, and the abolition of disability living allowance.
Britain likes to tell itself that it is a fair and compassionate country. How it treats disabled people has long been at the heart of this. And over this past decade of austerity, ministers have relied on this narrative more than ever: that even in tough economic times, “the most vulnerable” would always be protected.
Listen to Philip Alston, the UN’s special rapporteur on extreme poverty and human rights, and you start to get an idea of just how far the spin is from truth. Disabled people have been “some of the hardest hit by austerity measures”, he warned in a damning report last month, with many “driven to breaking point” by cuts. A broken benefits system has led to thousands of people dying after being found “fit for work”. Food banks are packed with people battling mental and physical health problems. The threadbare social care system is leaving disabled people trapped in their homes, in some cases waiting 14 hours without access to their toilet.
It is not simply that Britain is shirking its responsibility to its disabled citizens. We have reached a point where negligence is so widespread that at its extremes it is tantamount to abuse. The British state has to all intents and purposes turned on the very people who need it most.
I’ve spent the last seven years speaking to hundreds of these people, and 18 months writing a book. What I found were individuals who had been fundamentally abandoned. Susan, who has multiple sclerosis, has lost 4kg (8.8lb) after skipping meals to pay for her care and even her incontinence pads. Paul, a homeless part-time wheelchair user, sleeps rough in disabled toilets and at Heathrow airport. Rachel, a former nurse, has had her entire social care package removed; without someone to help her into bed at night, she now sleeps fully clothed in her wheelchair.
Anyone who thinks these horrors are an aberration in Britain’s supposed long history of care for disabled people is missing the point. That brief period of gains when I was a child aside, the crisis befalling us is so horrendous not because it is new, but precisely because it is not. People forget how recently it was that disabled people were shut away in institutions in Britain, or effectively banned from public transport, schools or jobs.
The brutal cost-cutting of the last decade has been a lesson in just how quickly hard-won rights for minorities can be rolled back. Just ask the parents protesting last month after their disabled children were pushed out of education because of funding cuts. Or the young disabled adults threatened with being forced out of their family homes and into care homes for the elderly.
None of this has happened by accident, though. Rather, it has come about as a deliberate attack on disabled people. In a climate of disenfranchisement, squeezed wages and growing inequality, post-2010, ministers and large parts of the media saw the so-called “scrounging sick” as an easy target. Smearing disabled people as little more than a drain on the public purse was not only a means to distract from the real causes of people’s problems, but came to excuse and normalise any number of nightmarish results that, even a few years ago, we’d have said were unthinkable.
While the ill-treatment of disabled people over the last decade has been the direct result of political choices, Britain is one of the wealthiest nations in the world, and so has every chance to turn the situation around – if it wants to. That none of this is inevitable is both bleak and a sign of hope.
Polling consistently shows that tolerance of government cuts is collapsing. The left can seize on this shift to recapture and build on the optimism of my childhood, remaking the case for flourishing public services, and with them, disability rights.
The most effective way to tackle the inequality faced by disabled people is to think about it in the round, looking at issues of housing, employment, social security and social care, and offering a coordinated strategy that is not only morally right but also speaks to common sense. Invest in accessible homes, care packages and benefits, and NHS bills go down and tax revenue up.
One of the greatest challenges in any of this is the way disabled people are perceived. Longstanding cultural prejudice around disability, combined with the demonising rhetoric of austerity, has exacerbated a sense of difference in society; an othering that perpetuates the idea that disabled people aren’t quite normal, or don’t want a life, a family, a home or an education like everyone else.
These attitudes do not spring from nowhere, but are directly related to how willing non-disabled people are to let state programmes for disabled people be decimated, and allow ministers who wield the axe to get away with it. What’s the point in funding social care if disabled people don’t really go to the pub with friends or travel to the office like “normal” people? Attitudes, just as much as funding cuts, need tackling in the coming years.
Britain feels increasingly as if it is at a point of national reckoning – this country, scarred by a decade of austerity and fatigued by Brexit, is now charged with working out what kind of society it wants to be. Where disabled people fit into any of this is rarely part of the conversation, and yet it should be one of the most pressing questions. The poignancy of this is all the greater considering we have largely been here before: generations had to fight for the disability rights that are now being carelessly stripped away.
This is a warning sign that should rally all of us who care about the future of our welfare state. When disabled people are hungry and housebound, the idea that Britain still has a meaningful safety net is increasingly obscene.
A blind British ski champion has spoken of feeling shaken and humiliated after being denied access to a Sainsbury’s store with his guide dog.
Paralympian John Dickinson-Lilley tried to enter the store in Holborn, central London, with his guide dog, Brett, but said he was stopped by a security guard.
He said: “I had finished work and because it was a really nice day, Brett fancied a walk because we’d been indoors all day.
“We stopped at the Sainsbury’s on Southampton Row to get some wine to enjoy the weather. As soon as I walked in, the security guard said: ‘No, no, no.’
“I said: ‘What?’ He said: ‘You know what. No dogs allowed.’ I asked to get the manager, but he refused.” Dickinson-Lilley, who retired from competitive skiing last year, said a supervisor eventually apologised.
When he complained about the incident on Twitter, Sainsbury’s responded by saying: “Hi John, sorry for the delay getting back to you. I’ve spoken to the store manager. It’s clear the security guard misread the situation and this has been addressed to prevent it from happening again.”
Businesses are required under the Equalities Act to allow guide dogs on to their premises, but Dickinson-Lilley said that this was the second time he had been denied access at the same store, and that he had encountered a similar situation at a different London branch of the store.
He said he would be taking Sainsbury’s to court over the incident. “The idea that you can walk into a shop and be humiliated like that in 2019 is outrageous.
“There’s clearly something that’s not working in their business. They know they can’t sell booze, knifes and razors to children, but yet they don’t know that I’m allowed in with my dog. They’re not prioritising disabled people.”
Sainsbury’s has sponsored the British Paralympic team since 2012 under a deal that runs until 2020.
Dickinson-Lilley said: “Sainsbury’s made quite a big thing of their involvement in sport. If you put yourself on the front line by saying: ‘hey, we’re sponsoring the Paralympics,’ you have to be a leader in that field.”
Sainsbury’s said in a statement: “We have apologised to John for his experience and reassure him assistance dogs are welcome in all our stores and petrol stations.”
Paralympics GB’s Matt Byrne said he waited at the Dublin Airport gate for an hour before take off but the pilot left without him.
The basketball bronze medallist from the Athens and Beijing games had been due to catch a flight to Birmingham on Monday evening.
He said he has been told Ryanair is investigating.
The 44-year-old from Nottinghamshire said he was “shocked” and the pilot “was wrong” to deny him access.
Mr Byrne has used a wheelchair for 29 years after a motor cross accident left him paralysed from the waist down.
He said he checked in with the special assistance team on arriving at Dublin airport.
“With Ryanair, if you have mobility problems you are last on the plane which is stupid really,” he said.
“All the passengers went through and down the stairs, so I went down the lift and waited there when staff said to me ‘the pilot’s refusing to take you because he’s running late’.
“It would have taken five minutes max to get me on that plane.
“I didn’t miss that flight. I was ready to get on that plane, But it was the Ryanair pilot’s decision to not let me on.”
Mr Byrne said when using other airlines wheelchair users boarded before other passengers.
“At the London Paralympics it was all about equality and bringing disability rights to the forefront, but Ryanair don’t get that,” he added.
“They’re lucky I can look after myself, but if it was someone with worse conditions, or more frail it could have been worse.”
Mr Byrne eventually caught a flight to Birmingham two hours later.
In a statement to the BBC the airline said: “Special assistance services at Dublin Airport are operated by OCS – at great expense to the airlines.”
A mayor who has a prosthetic leg has reacted to social media “hate speak” about her choice of footwear which she believes could discourage disabled people from entering public life.
Stockport mayor Laura Booth, whose left leg was amputated below the knee as a child, said she was mocked on Facebook for wearing flat shoes to an event.
She said one comment read: “Look at the state of her”.
Ms Booth said her footwear did not diminish her ability to do her job.
The councillor, who also has chronic pain and back problems, wore pink leather lace-up shoes to a ceremony at a bakery in Reddish on Monday.
She said she wanted to walk to the event and stand up, rather than use her wheelchair.
‘Really nasty’
Ms Booth explained: “People commented on the bakery’s photo; ‘A mayor in trainers, disapproving face’, ‘Look at the state of her’. ‘Get back to your caravan’.
“They make these judgements and can get really nasty.”
Ms Booth, who lost her leg after a car crash, said: “I am prone to falling, I have a different gait so I need shoes with support. There is limited choice.
“It’s these attitudes which will put people off entering public life if they have a health condition or disability,” she said.
“Also a woman should be able to wear whatever shoes she wants irrespective of disability or not.”
The Labour member for Offerton said she wanted to highlight the “hostile narrative” which exists around disability and invited people to confront her in person.
“Bring it on. Come and say it to my face. My job is to show you disability is not inability. Sometimes you have to facilitate.
“In this event it was flat, lace-up shoes, so I can stand up and talk to people.
“It is insulting and wrong that people think my shoes determine my ability.”
Other people on Twitter showed their support by telling the councillor to “wear what is comfortable” and “ignore” any abuse.
One commented “only a woman would have her shoes scrutinised”.
For the past five years, Alice has been making a living as a sex worker. She is also disabled; she has bipolar type II, which leads to hypomania, depression and a severe lack of physical energy.
For Alice, these two sides of her life – disability and sex work – are inexorably linked. Alice (not her real name) started this line of work when she was at university – it was a way to make some extra cash to top up her student loan. She had always intended to quit sex work after graduating. “That was three years ago,” she says.
Upon leaving university, she struggled to retain a job. Traditional employment – with a boss and set working hours – proved impossible during depressive episodes and her job came to an end for that reason. She started a postgraduate degree, but her mental health meant she kept missing lectures and the university eventually recommended she take a year off. “I’ve to all intents and purposes [had to] drop out,” she says.
The disability benefit system is supposed to be there to catch people such as Alice; a safety net for when ill health means she cannot have a job to pay the bills. But she is in a catch-22: she cannot claim the out-of-work sickness benefit, employment support allowance (ESA), because she is still registered as a student, despite the fact that her mental health meant she had to leave her course. “On the one hand, I’ve got someone saying: ‘You’re too unwell to study or work.’ On the other, I’ve got [the government] saying: ‘You’re not unwell enough to get support, and go away.’”
On top of this, she was turned down for the other key disability benefit, personal independence payment (PIP). In the middle of a depressive episode, she could not fill in the extensive paperwork. “Ironically, I wasn’t well enough to chase them,” she says. After reapplying and being rejected again, she had to appeal against the decision, which constitutes a mound of paperwork and then a tribunal in court. Besides, Alice worries that mental health problems are rarely seen by the benefit system as being as debilitating as, say, being a wheelchair user. It is a concern backed up by evidence: in 2018, the high court ruled that the PIP system was “blatantly discriminatory” against people with mental health problems, even going as far as to order the government to review 1.6m disability benefit claims. It all adds up to a situation where Alice could not pay the bills with either a wage or social security. As she put it to me: “I’ve got no income to speak of and the government doesn’t care.”
Instead, she has had to rely on sex work to get by. When I first speak to Alice, she is working. I have accidentally called her early and her client is still in her home. This is an intimate set-up but it generally works for her health. Being her own boss, she has a flexible working pattern and can control the use of her own flat. “When I’m having my down days, I don’t have an employer to answer to, and then, when I’m elated or if I’m actually well, I can sort my own bookings out and organise my own working pattern to cover the days that I can’t work,” she says.
Arranging her working hours around fluctuating health is especially easy with sex work, she explains, as she is able to earn a lot quickly on her good days, “if you put the time and energy in”. However, her health means she has often not got enough energy to take bookings. Alice uses what she calls “standard rates”: £130 for an hour at her place, £150 at someone else’s, £50 for 15 minutes and £750 for overnight. Most clients tend to go for half an hour or an hour, she says. She describes her working hours as “binge and starve”: she goes several weeks without a client and then sees several men a day, for a few days. “Then I recover,” she says.
There is a pressure to take on as many clients as possible when she is well. Without her disability benefits or a regular income, Alice is thousands of pounds in debt: £10,000 to friends she has borrowed from over the years; her student loan; a £3,000 overdraft; and maxed-out credit cards. Rare periods of hypomania can lead her to shop excessively. But for the past five years, it is simply her lack of income that has seen her finances spiral. She is getting into more and more debt every month, as her outgoings exceed her earnings. The stress of the debts is taking a further toll on her mental health, “only making the situation a vicious cycle”. Finding clients has become a way to alleviate the debt and keep her head above water. “I wouldn’t have been able to survive without sex work,” she says. “It’s quite literally saved my life.”
As we talk, Alice repeatedly tells me there are times she really enjoys sex work, but she admits her choices are heavily controlled by circumstance. She says: “I’m definitely being failed by the system right now – being financially coerced into it by the government.”
As the UK recession and the subsequent austerity measures kicked in, I began to speak to a number of disabled women who had turned to sex work in order to get by. The methods of work varied. Some met men in person who paid them in exchange for sex. Others began sex-cam work; half an hour stripping on Skype for a stranger across the internet. Women with pain- or fatigue-related disabilities were particularly prevalent in the latter. Sex work was the one job they could do from their beds. But if the disabilities varied, the reasons for taking on this work often came back the same: like Alice, without access to benefits or traditional employment, sex work was the only way they could survive.
Alice’s best friend, Sarah, is also disabled and has chronic pain. Unlike Alice, Sarah has been granted disability benefits but does sex work to top up her low payments. The government gives her “some, but not enough to live off as a human being”, Alice says. Many of her friends with disabilities and chronic illnesses started sex work for the ease and flexibility it offered to those who are too unwell for traditional employment – or, as she puts it, whose energy levels are sometimes too low to function properly but “who need money to survive in the world”. “It is what it is,” she says. “If the state won’t support vulnerable people, they have to find work. And if they can’t, they’ll find options.” .
This use of sex work as a last option for marginalised women is not a new phenomenon, but as benefit cuts have been rolled out, austerity measures are exacerbating it. In 2018, Frank Field MP, chair of the work and pensions committee, reported that some women in his Birkenhead constituency had been pushed into prostitution because of the local roll-out of universal credit. The union Aslef suggests that on-street prostitution increased by 60% between 2010 and 2017, which has, in particular, been linked to an increase in women having their benefits sanctioned.
Women’s organisations and outreach workers across the country repeatedly point to this pattern. Changing Lives, a charity that provides women’s services across the north of England and the Midlands, conducted research in 2016 into what it termed “survival sex work”. It found women to be selling penetrative sex for as little as £10 for a place to stay or even in exchange for clean clothes, with “punters” approaching them to offer as little as a fiver at times when the women are perceived as being particularly vulnerable. Staff at the organisation’s women’s outreach centre tell me that a growing number of women are being pushed into sex work because they have their benefits stopped for things such as missing JobCentre appointments or failing to attend interviews.
“We noticed a big increase in women selling sex after the introduction of benefit sanctions, not just to make ends meet but, in some cases, to provide the basics for their family,” says Laura Seebohm, the director of operations at Changing Lives. “Some of the women were so desperate that they were selling sex for the first time while others had successfully got themselves out of the world of survival sex only for the sanctions to come along and force them back into it.” Another staff member at the service, Laura McIntyre, told me that women with learning disabilities and those with multiple and complex needs have been particularly at risk.
At the same time, Sheffield Working Women’s Opportunities Project in 2016 warned that austerity measures, including benefit rejections and sanctions, were behind an estimated 400% rise in women using their service who had entered prostitution. Some were new to sex work, they noted, but many were women who had previously managed to leave prostitution only to have to return as much as a decade later because of losing their social security. “We know that some women come out just so they can buy food, and once they’ve raised enough they go home again,” the manager of the centre went on. “Quite a lot of women might only intend to come out for five or six weeks to make some money while they wait for payments to come through but once they’re in it again, it can be very difficult to leave.”
Alice is, in many ways, in a much safer environment than the women resorting to on-street sex work. She finds her clients through the internet and coordinates them through a work phone and email address. “Ninety per cent of sex work is admin,” she laughs. But she admits that, even working in this safer environment, she is sometimes more vulnerable because of her mental health. If she is hypomanic, she doesn’t just take on more work but forgoes safety checks: during those periods, she is active, creative, energised, “and everything seems a good idea”. “It’s not necessarily safe. I make riskier decisions – like driving two hours to somewhere I don’t know at 3am,” she says.
Alice is doing this at a time when women generally, let alone those contending with health problems, are facing an increasingly arduous labour market. The push to insecure, low-paid work in recent years has disproportionately affected women, who are already more likely than men to be in part-time or low-waged roles. Since the start of the global crash in 2008, 826,000 extra women have moved into low-paid and insecure work in the UK, according to the Fawcett Society. At the same time, the number of female part-time workers who would like to be working full-time has nearly doubled, to 789,000.
This shift to precarious work will likely exacerbate what are already poorer working opportunities for those women with disabilities. Research by Comic Relief in 2017 found that as much as 50% of the work disabled people perform is in low-paid, short-term and part-time roles, meaning female disabled workers are contending with the impact of both sex and disability. Even cuts to disability benefits are, in some ways, gendered. Women are more likely to be disabled – there are around 6.4 million disabled women in the UK compared to 5.5 million disabled men – and the Women’s Budget Group in 2018 found that almost six in 10 individuals claiming PIP are women.
When we next talk, Alice has just received a large pack of documents from the Department for Work and Pensions: 100 A4 pages front and back. She needs to read and understand all of them before her tribunal appeal of her PIP rejection; a process that has, overall, taken the best part of a year so far. “The government is making it deliberately as confusing, intimidating and difficult as possible,” she says. A local disability charity has been helping her navigate the appeal, but lottery funding – its only source of income – is due to run out in a few months’ time and Alice is worried she will be left to take on officials at the tribunal alone. “It’s all very overwhelming and distressing,” she says. “I really need the government to recognise that I have next to no income and it is a direct result of being disabled.”
Her mental health is deteriorating as a result and she has been put under the care of her local crisis team for suicide prevention after developing suicidal feelings. Despite sending out multiple CVs each day she is, more than ever, “not in a place where I can manage a traditional job”. Alice is trying to formally withdraw from her degree so she is eligible for ESA, and with it she might finally get a bit of support from the benefit system. In the meantime, it is a case of borrowing money from friends, credit cards and her growing bank overdraft. “I don’t know what to do at this point,” she admits. “I’m treading water. Or at least delaying my drowning through … sex work.”
When Elly Kitaly gave birth to her son she found out he had Down’s syndrome. She realised that the condition was so ignored in her country, Tanzania, that there was not even an adequate word in her language, Swahili.
This is Elly’s account of her journey to find out why.
Waiting for an internal flight at Dar es Salaam’s airport, a young accountant started making conversation with me.
“Why are you flying to Arusha?” he asked.
I told him I was going to meet a friend I had made on Instagram. She is a mother, like me. Her son is four, like mine, and just like my son Chadron, he has Down’s syndrome.
“What’s Down’s syndrome?” he asked.
This is a question I get often in Tanzania. It doesn’t matter how educated you are, no-one seems to know what it is.
I geared myself up to give my well-practised explanation.
I wanted to switch into our language, Swahili, but I knew I had to keep to English because there isn’t a good-enough word for Down’s syndrome in Swahili.
From dwarf to zombie: the problematic terms used in Swahili to describe Down’s syndrome
Mlimbuko dalili dumazi – this term is used in the Swahili dictionary for disabled people but I never hear anyone use it in real life. Doctors aren’t even aware of it. “Dumazi” translates as dwarf and I have a suspicion that is because that is a translation of the word down – as in down low or short. This is a mistranslation because, while one of the symptoms can be stunted growth, Down’s syndrome actually gets its name from the doctor who first observed all its characteristics together – John Langdon Down.
Taahira – this is the term I hear used most often. Its English equivalent is retard. Just like retard it is a highly offensive insult. But unlike in English, it hasn’t been replaced by a term like “learning disability”. Other insults with a similar meaning are “mazazeta” and “zuzu”.
Mtindio wa ubongo – this is the most socially acceptable term and you’ll hear officials use it, but it isn’t accurate as it means cerebral palsy.
Ndondocha – this slang loosely means zombie, as in someone who has been possessed. It refers to the belief that witch doctors can cast spells to make people mentally disabled. It can also be used to mean someone who has been cursed by their ancestors.
My language is a reflection of my country – it can sometime feel like Down’s syndrome (DS) doesn’t exist in Tanzania.
Take my fellow passenger at the airport.
I explained to him that there are some common physical signs of DS, like slanted eyes and a flat nose.
He looked blank. So I showed him pictures and he said he hadn’t seen people like this before.
We boarded our flight and the conversation came to an end but it got me thinking.
Looking back, I realised that growing up, I’d never seen a person with DS either. Not at school, not in the market, and not at church.
I was barely aware of the condition until I gave birth to my own son.
I remember frantically Googling it in my hospital bed.
Find out more
Listen to Don’t Hide My Son, on The Documentary, on the BBC World Service, on 4 June
I learnt that the most common form of Down’s syndrome is trisomy 21, trisomy meaning third chromosome. You can think of chromosomes as the instruction manuals for how to build your body. It’s typical to have 23 instruction manuals, each in duplicate, but people with trisomy 21 have an extra, third, copy of manual 21.
Crucially, I learnt that this extra chromosome comes about as a result of random events during the development of the embryo, egg or sperm cells.
If it’s random, it can occur just as much in Tanzania as any other country.
Given that, why hadn’t I, or my new accountant friend, seen anyone with DS in public?
With this question in mind, I arrived in Arusha and met my Instagram friend, Magreth Paschal, for the first time in real life.
As we sat at her home admiring her plants from her floristry business, she told me the first she had heard of the condition was when her son was diagnosed.
Like me, she hadn’t seen people with DS at all when she was growing up.
She suspected that this was because parents had been shamed into hiding their children.
The reason she held this suspicion was because of something that happened to her when her son Jotham was a baby.
A customer of hers had made a shocking accusation in a text message.
She’d kept the message and read it out loud to me: “Shame on you for going to the witch doctor and sacrificing your son just so that you can get rich.”
I had heard of this idea before because I had been told that people had said similar things about me.
It’s a complicated belief to get your head around.
Some people in Tanzania think that people have DS because their parents have gone to the witch doctor to cast a spell to make themselves rich and have given their own child’s mental capabilities as a sacrifice.
Magreth was incredibly sad that someone would make such an accusation about her.
“After I received the text, I couldn’t even continue to feed the baby. I just cried and cried. It was the worst experience of my life.”
When she went out to the park with her son she started noticing people staring at her.
“Back then I was not comfortable to go out in public with my son because some people looked at me as if I’m a sinful person,” she told me.
She felt people judging her most when she was driving with Jotham in the car – in a town where many people couldn’t ever dream of owning a car in their lifetime.
“That’s when you give them the answer that you have used your son for the money ritual.”
Sitting across from Magreth, I was filled with anger. I found myself shouting: “I want the world to know that we did not go to the witchdoctor.
“That isn’t how we ended up with children with Down’s syndrome.”
While the accusations made against parents are outrageous, if those parents do give in to the shame and hide their children, the consequences are heartbreaking.
By locking their children away, these parents are denying them the opportunity to socialise and learn.
The condition can lead to smaller stature and a learning disability. But our children with DS do learn, it just takes a bit longer.
Magreth and I have a shared love for videos on social media that prove this.
There was one that blew my mind and I couldn’t wait to to tell her about – US actor and campaigner with DS, Frank Stephens’ speech at congress had gone viral.
I had never seen someone with DS speak as eloquently as him before. I got in touch with Frank to ask him what circumstances had led him to be such an accomplished public speaker.
He was clear – it was a result of his parents involving him in everything when he was growing up.
Locking up children isn’t just restricting their opportunities. It can actually create more disabilities.
One physiotherapist, Godfrey Kimathy, told me when he was working in Magreth’s region he found a seven-year-old girl who couldn’t walk or talk or go to the toilet, not because she had DS but because she had been locked up her whole life.
Her parents had locked their daughter up because their neighbours believed they had made her that way in order to become rich.
But Godfrey said he couldn’t even see the wealth that the neighbours were talking about.
Magreth went down a different route – she became defiant against this stigma.
She now takes Jotham everywhere and by doing so she hopes to change her world.
And I want to change my world too by proposing the introduction of a new Swahili term – “Traisomi ishirini na moja” it’s a direct translation of trisomy 21 – that extra chromosome.
In the second of a two part series on the social care crisis, Panorama exposes a chaotic system on the brink of crisis. With more and more care homes closing, and a national shortage of carers, social affairs correspondent Alison Holt meets vulnerable people threatened with selling their homes to pay for their care, and their families battling the funding system. She tells the devastating stories of elderly people with no-one for fight for them and asks why successive governments have failed to reform a system experienced by so many as unfair, confusing and sometimes cruel.
A claimant with only months to live who received a PIP review letter has vowed to fight to raise awareness of the unfairness of the system.
Ron Stevenson, 69, was diagnosed with motor neurone disease ten years ago. He is now almost completely paralysed and relies on help from carers and his wife. He receives the highest rates of PIP.
In spite of the fact that MND is a progressive illness, last month Ron received a letter telling him that a reassessment of his PIP would now take place and that if he did not respond he would lose his award.
Ron explained:
“The letter said if you do not reply then on 29 July your payments will stop.
“Obviously I’m aware that this is something that can happen, but it was still a shock.
“People with motor neurone disease never get better. There is only one outcome and that is death.
“Anyone with a grain of sense would’ve realised anyone paralysed and life limited as I am cannot be anything other than eligible.”
Ron contacted his MP and also obtained a DS1500 form, which states that a patient’s death is likely within the next six months, from his GP.
The DWP then relented, though still insisted that a further review would take place in 3 years time.
Ron, however, is fighting to raise awareness of the cruelty of putting people through the stress of reassessment when their condition is one which can only ever get worse.
Ron said:
“We were promised by the government that the reassessment for benefits would stop in 2016 – this has been broken.
“I’m working to raise awareness, we won’t stop fighting, despite the fact the disability is fatiguing.
“I have lost the use of my limbs, but I shall use my voice, while my friends can no longer.”
You can read more on this story in the Independent and in the Mirror.
Rustling crisp packets, shuffling feet and the general buzz of conversation made lectures a trial for Gemma Long during her first degree. She suffers from sensory overload connected to her autism, which was only diagnosed after she graduated. But when she started a teacher-training course at the University of Huddersfield, she received access to software to help her cope with dyslexia and found it transformative. It allowed her to listen to lectures quietly at home, which dramatically improved her grades. She went on to take an MA at the Open University and is now studying for a PhD at Sheffield Hallam University.
“I struggled to understand the point of lectures until I got that software,” recalls Long. “I didn’t realise how much useful information was in them. As someone who is hypersensitive to noise I spend most of my time in lectures trying to filter out the background noise, which means I miss much of what the lecturer is saying. Being able to audio record the lectures and listen back to them in a silent room meant I was finally able to digest the content.”
Technology is breaking down barriers faced by students with disabilities. This matters, because fewer disabled students go to university than their non-disabled peers. Online journal articles or reading lists now mean that those with visual impairments can zoom in to read printed text or convert it to easier-to-read formats such as braille. Universities are also increasingly recording lectures which students can replay at their own pace, which benefits students with dyslexia or attention deficit disorder (ADHD) too. Often, all this can be done through laptops at home, giving disabled students greater independence.
According to Alistair McNaught, a digital learning consultant, universities are increasingly tracking how students learn, and then directing them to the accessible resources most suited to their personal needs. Staff can also receive automated feedback on the accessibility or otherwise of material they upload to the virtual learning environment.
McNaught appreciates the way assistive technologies can help all students – whether they have a disability or not – but stresses that it’s important for universities to get the basics right first. “Many higher and further institutions have inaccessible websites or inaccessible digital content. If the content is inaccessible, investments in assistive technology can be undermined at a stroke.”
This is something that new European regulations aim to tackle. After September this year, new material published on university websites and virtual learning environments will need to meet standards on accessibility.
This drive is complemented by other technological innovations. There are new mobile apps to guide students through tricky periods or situations. For instance, Brain in Hand is designed specifically for people with autism, mental health conditions, brain injuries or specific learning difficulties. It suggests personalised coping strategies to students in distress, offers reminders about tasks, and allows them to monitor anxiety levels and access help swiftly when needed.
Some universities are taking a wider approach. At De Montfort University, around 200 students can record their moods via a traffic light system – green when all is OK, amber when they are feeling uncomfortable, and red when they need help. Specialist mentors track these notifications and step in when needed, as well as observing what activities seem to cause each student particular stress. For example, many students seem to record high anxiety levels on Wednesday afternoons, which have traditionally been left free, so the university now offers drop-in sessions on those days.
Universities are feeling the pressure to improve accessibility after the government reduced funds for Disabled Student Allowances in 2016-17. Universities were given more money to persuade them to “create a more inclusive learning environment” overall, rather than focus on targeted support for individuals.
But although disability campaigners have broadly welcomed this, they point to some problems. Piers Wilkinson, head of Ramping Up, a consultancy on accessibility in higher education and disabled students officer elect at the National Union of Students, says that a general inclusive approach can be helpful in identifying that a particular style of teaching or assessment does not work for all students, not just their disabled peers. But he argues that although it’s important, universities still need to provide targeted support for disabled students.
Furthermore, analysis by Policy Connect, a cross-party thinktank, shows the number of students receiving technology equipment through DSA has dropped since the £200 charge for DSA-issued laptops came in, despite a substantial increase in the number being assessed as needing support. It is putting together a report, due out in the next few weeks, which is expected to recommend removing these upfront costs.
Rachel Hewett, fellow in the Vision Impairment Centre for Teaching and Research at the University of Birmingham, adds that even when students receive laptops the fact they are issued by the DSA can make them unsuitable. “Once they have put on all the different software they need and are trying to run them in conjunction with other laptops they aren’t powerful enough,” she says. Many students struggle to use the equipment as they aren’t given any training, either.
Hewett would like to see the DSA fund mainstream technology such as iPads, which increasingly include features such as braille-writing capability. Getting used to mainstream technology would also be more helpful to students long term, she argues.
For Long, universities just need to get better at promoting the support that’s already there. She says that making specialist software and training generally available, rather than confining it to disabled students, makes it more widely known, as well as removes stigma. For someone like her, who received her diagnoses late, it would have been particularly helpful. To this end, the assistive technology network she founded to represent staff who support their disabled students with tech, will hold its first awards ceremony next month.
Universities are slowly tackling the barriers for disabled students, helped along by developments in technology. There’s more yet to come: Wilkinson is excited about the prospect of virtual reality – particularly when it comes to fieldwork. “It can be incredibly difficult for a disabled student to get a wheelchair on to a salt marsh,” he says. “But if the learning aims are being immersed in an environment, and making discoveries, VR can achieve that.”
Today, Victoria Derbyshire spent half of her hour long programme interviewing Esther McVey, because Esther McVey is running to be Tory leader.
The interview covered various topics, which included disability benefits, which is why we are linking to the programme here. The interview starts at around 17 minutes in.
For the record, Same Difference strongly dislikes Esther McVey. She made a very bad Minister For Disabled People and a worse Secretary for Work and Pensions. We hope our next Prime Minister is Anyone But McVey.
Parent of a wheelchair user and disability campaigner Daniel White recently shared the following on Facebook:
Statement from the boss of @LoveIsland confirms that overweight & Disabled people wouldn’t be attractive to the cast. Absolutely shockingly vain & narrow minded. Sums up the vanity & not so hidden message of Ableism & determination to promote body dysmorphia in this “show”
Same Difference shares Daniel’s deep disappointment at this statement. Our editor, physically disabled since birth, knows better than most that disabled people are attractive, that people of all abilities and all disabilities do find disabled people attractive and fall in love with us.
In fact, during Big Brother 2008, our editor herself took a shine to both the appearance and the personality of contestant Darnell Swallow, who had Albinism. She also happens to find BBC Three star Jono Lancaster very physically attractive.
On a slightly more serious note, she strongly believes that disabled people, as well as being attractive, are more than capable of finding and choosing their own love interests and/or romantic partners- without any help from trashy, disablist TV programmes with outdated opinions.
So, disabled readers, Same Difference believes that we shouldn’t care that Love Island doesn’t seem to find Us Lot attractive. We don’t need ’em, anyway.
They need us though, to view their trashy programme and give ’em ratings. We have non-disabled family members and friends and even (shock horror) non-disabled romantic partners who may wish to join us in never watching Love Island again because Love Island have chosen to reveal this outdated opinion in public.
But, readers, if Love Island doesn’t care about its power to reach a mass audience and influence their opinions on all differences, why should our editor, who has never seen their programme in her life, and now has even less of a wish ever to do so, waste her time and sarcasm writing articles about their outdated policies and the damage these outdated policies could do?
The publication in quick succession of three reports, combined with last week’s BBC Panorama programme showing patients at Whorlton Hall hospital being abused by staff, have shed much-needed light on the mistreatment of learning-disabled people. Eight years after a reporter went undercover at a similar hospital, Winterbourne View, the scenes appearing to show vulnerable adults being bullied and threatened were all the more appalling for being familiar.
The emergence over the weekend of a whistleblower, former Care Quality Commission inspector Barry Stanley-Wilkinson, made the systemic nature of this failure even clearer. Mr Stanley-Wilkinson says he wrote a critical report of Whorlton Hall that was never published. The CQC says that report did not allege abuse. But it has apologised for failing to spot problems at Whorlton Hall, which it recently rated “good”.
The hospital, which was recently taken over by the US healthcare company Cygnet, now stands empty. Ten staff have been arrested and the criminal justice process must run its course. But any grim satisfaction in rooting out bad apples should be short-lived. What has been revealed over the past 10 days, in reports by children’s commissioner Anne Longfield, the CQC and academic researchers as well as by the BBC, goes beyond the actions of a callous few.
The underlying problem has three main aspects. The first is discrimination against learning-disabled and autistic people. Last week’s review of mortality rates, commissioned by the NHS, showed that women and men with learning disabilities die 27 and 23 years earlier than the general population, with researchers pointing to “bias in treatment” as an explanation.
Such bias of course intersects with other prejudices – as the variation in death rates between women and men suggests. Panorama provided further evidence of this, with shocking footage of male carers ganging up on a female patient known to be afraid of men, a form of misogynist bullying they described as “pressing the man button”.
The second aspect is the standard and status of work in the care sector. This question is far bigger than Whorlton Hall. The fact is that care – whether of autistic or disabled people, dementia sufferers or looked-after children – is undervalued. This does not excuse unkind or illegal behaviour. It does mean that many of the people employed in this area are underqualified, poorly motivated and unsuited to what must be recognised as demanding work.
The third aspect is structural and concerns commissioning and regulation. The squeeze on local authority budgets combined with the government’s failure to propose, let alone deliver, a policy on social care, has created unhealthy conditions. The commissioners who purchase care packages must be accountable. So must the CQC. But politicians too must take responsibility for the failure to follow through on commitments made following previous scandals. Health secretary Matt Hancock’s refusal to be interviewed about Whorlton Hall was a serious mistake.
Since 2011, the number of adults living in specialist hospitals has fallen from 3,400 to 2,300. But steep rises in the use of physical restraint, combined with warnings from Anne Longfield and others about “values and culture”, are alarming. If the government has rejected proposals for an independent commissioner for learning-disabled people, ministers must explain why – and what they plan to do instead.
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