Amy Winehouse’s mother is among a group of campaigners who have demanded that Boris Johnson make urgent changes to the benefits system.
Janis Winehouse delivered a letter signed by over 21,000 people asking the prime minister to amend the process for claiming Personal Independence Payments (PIP), which replaces the disability allowance.
Although PIP is designed to alleviate extra costs for those living with a long-term health condition or disability, campaigners have raised concerns about the assessment process and the complexity of claims forms.
Winehouse, who suffers from secondary progressive multiple sclerosis (MS) and is an MS Society ambassador, said she wants to support people living with MS “whose voices aren’t being heard”.
She said: “Some of my closest friends have been through the exhausting and demoralising process of claiming PIP, and it can’t go on any longer. MS is relentless, painful and disabling, and right now PIP is costing many people their independence rather than giving it to them.”
A spokesperson from the Department for Work and Pensions defended the payment system, saying that the government was paying £84m more annually than it was a decade ago. He said: “We will do more to help PIP claimants by introducing a minimum reassessment period and we’ve scrapped unnecessary reviews for pensioners and those with the highest needs.”
Ashley Arundale, 29, a veterinary nurse in Leeds who suffers from a relapsing form of MS, said the PIP process is “designed to trip us up at every turn”. “I’m not an angry person, but it makes me really angry – the total lack of knowledge was alarming. I thought about appealing, but was afraid of making a fuss and losing the award altogether, which I know has happened to others. Right now I don’t feel supported by the system at all.”
Jonathan Blades, head of campaigns and external relations at the MS Society, said he hoped the prime minister would “read this letter carefully”. “The UK’s welfare system is in crisis, leaving thousands of disabled people suffering as a result,” he said. “A process that was designed to protect society’s most vulnerable is now too often doing the opposite.
“More than 100,000 of us live with MS in the UK, and we need common-sense changes to PIP now so people can get the basic support they need.”
On 7 February 2018, 32-year-oldTyrone Givans was remanded in custody, charged with possession of a knife and breach of restraining order. A court custody officer noted his history of self-harm and completed a suicide and self-harm warning form. The person escort record (PER), which went with him to Pentonville prison, noted that Givans had a history of self-harm, misused alcohol and cannabis, and had depression. Givans was profoundly deaf and did not have his hearing aids with him.
At Pentonville, he told an officer he had no thoughts of suicide or self-harm, and, though this differed from the information on his PER, the officer took him at his word and he was not placed on an at-risk register. Neither was he referred to the prison’s equality officer, who had expertise in working with deaf prisoners.
The next morning, he saw a prison doctor, who noted Givans’ deafness, but did not refer him for new hearing aids or try to get hold of his old ones.
On 21 February, Givans’ mother, Angela Augustin, visited him and brought one of his hearing aids with her; she had been unable to obtain both. Givans told her he did not feel safe on the wing he was on. He said his mattress had been slashed and he was worried because he could not hear anyone entering his cell. His mother reported her son’s fears to staff, who later said they had tried to move him, but there was no space in the overcrowded jail.
On 26 February, Givans’ cellmate returned to the cell from attending court with an officer to find that Givans had killed himself. His was the eighth self-inflicted death at the north London jail in 30 months.
At his inquest, last January, the jury concluded that numerous systemic and individual failures led to his death and that his “needs were not met”. And the independent investigation by the prisons and probation ombudsman in 2018 found a catalogue of errors. These included an “over-reliance” on Givans’ assurances that he was OK, an “absence of meaningful contact” with him, as well as a failure to consider his disability, or to document, let alone act on, Givans’ concerns that he was under threat.
A spokeswoman for the MoJ says that since Givans’ death, HMP Pentonville has introduced an improved referral system for new arrivals – and works with the local authority and the healthcare provider to ensure that individual needs are met.
Augustin says Givans “was scared without his hearing aids” and believes he would still be alive if staff had taken notice of his distressed state. “Now he cannot see his child grow up,” she says, “which is not normal – any more than it is for a parent to suffer the death of a child.” Lisa Smith, Givans’ former partner and mother to his daughter, is also deaf. She says she can’t understand how prison staff could not see how vulnerable a deaf person without hearing aids would be. “Putting him in prison without hearing aids was like putting him in a hole in the ground,” she says.
Christmas is a wonderful time to reflect and think about what you want to achieve in the year to come. It may be the case that when spending some quality time with loved ones and having that time to reflect on how life is currently that you wish to investigate medical treatment that you feel hasn’t turned out the way you hoped.
If that is the case and you feel ready to approach a lawyer to investigate treatment for you we suggest a handy checklist before you make that first contact:
When did you receive the treatment in question or when did you think that something had gone wrong? Clinical Negligence claims have a 3 year ‘limitation’ meaning that a claim has to be brought to Court within 3 years from either the date of the alleged negligent treatment or from the date you thought something had gone wrong, whichever is later. This does not means every case goes to Court, quite the reverse but it means we have to be wary of protecting your position to bring a claim. If you are thinking about investigating further there are time limits to be aware of.
Do you have a clear recollection of the timeline of events? When investigating a claim we will of course obtain your medical records but it is really helpful to have as much information from the outset of a claim to allow us to investigate thoroughly. Things such as; was the treatment provided through the NHS or on a private basis, which hospitals did you go to, how many times did you visit your GP and did you make use of the NHS 111 service are all very useful pointers that help guide initial investigations.
Have you made a complaint about your treatment? If so, do please let us have the response. It can be the case that clinicians can be more open prior to the involvement of lawyers and this can aide investigations. It is also useful to understand any arguments that might be raised to defend any care that was provided so those arguments can be assessed as early as possible.
What questions do you want answered and what do you want to achieve through litigation? Ultimately we are here to represent you and investigate the care you have received on your behalf. It is therefore vital to us that we get answers to the questions that you have and try and achieve the outcome that you want. Compensation is the main focus of a claim but for some clients an apology makes a world of difference or acknowledgement that processes have changed so the same thing does not happen to anyone else. If you can tell us the questions you have and what you want to achieve from the outset that will become the centre of what we do for you.
Bringing a claim is a big decision and we appreciate the emotional impact this has on our clients and as lawyers we are with them every step of the way to provide support and most importantly answers.
James Anderson, Solicitor in the Clinical Negligence team at Lime Solicitors
Wife Sharon said: “It’s not a death sentence but it affects certain nerves in your body. You have a good day, a good day, then a really bad day.”
Ozzy added it was hard to tell whether the numbness symptoms he had were from the Parkinson’s or the fall.
The singer said: “It’s been terribly challenging for us all.
“I did my last show [on] New Year’s Eve (2018). Then I had a bad fall. I had to have surgery on my neck, which screwed all my nerves.”
He said he was now on medication for Parkinson’s and nerve pain following the surgery he had after his fall.
Rumours had been circulating about his health, but Ozzy said: “I’m no good with secrets. I cannot walk around with it any more ’cause it’s like I’m running out of excuses, you know?”
He added that he was grateful to his fans. “They’re my air, you know. I feel better. I’ve owned up to the fact that I have… a case of Parkinson’s. And I just hope they hang on and they’re there for me because I need them.”
It was his son Jack and daughter Kelly who first realised that something wasn’t right with their dad. “The hardest thing is watching somebody that you love suffer,” Kelly said.
Jack, who was diagnosed with multiple sclerosis in 2012, said he could relate to his father.
“I understand when you have something you don’t want to have – but if he wants to talk… and if not, I try to slip in information,” said Jack.
Ozzy said his health was improving. “I’m a lot better now than I was last February. I was in a shocking state.”
Sharon said the next step was to consult doctors outside the US and explore other possible treatments.
“We’ve kind of reached a point here in this country where we can’t go any further because we’ve got all the answers we can get here,” she said.
“So in April, we’re going to a professional in Switzerland. And he deals with… getting your immune system at its peak.”
Digital Spy recently caught up with Amy for an insight on what’s next for Courtney following the emotional scenes.
How is Courtney going to react to Jesse’s death?
“It’s total devastation and heartbreak, so for me as an actor, it’s having to play that grief. In the build-up, Courtney and Jesse have had this lovely and joyful relationship together. Hopefully, if we’ve done our jobs correctly, the audience will have wanted them to have a happy ending.
“Jesse’s death is a situation where it’s so shocking to begin with and then we explore the devastation of it. For me to be able to play that, and show that vulnerable side, is challenging but also an absolute gift.”
How did you find out that Jesse was being killed off?
“The producers called me up to tell me that it was going to happen. First of all, I was just so shocked. You can never really predict these things.
“I thought it’d be so sad, especially when I found out exactly how it would happen, because it’s such a real situation. It’s not one of these really far-fetched events that is just built up for the drama of it. That’s where the heartbreak lies, because you could imagine something like this happening in real life.”
Are you glad the show is raising awareness over the dangers of binge drinking?
“Yes, very much so. People will have been drinking more over the festive period and maybe this will make people think more about it and how your body might react. You could be fine one day and not the next. That’s the case here.
“Jesse is not a drinker and we haven’t seen him with alcohol much before, but it’s just one night and that’s it. It will be a shock to people, but it will make them think.”
Will this have a big impact on Courtney?
“Absolutely it does. Courtney is a strong character, who’s there for the people she cares about. I think you’re going to see her vulnerable side, although at first she’s trying to fight that. It’s her instinct to just carry on, keep going and everything will just move on.
“But when you’re talking about grief, which isn’t a simple or linear thing, it doesn’t work out that way. I hope, as long as I’ve done my job correctly, we’ve built this relationship that everybody likes and the outcome will be very hard to watch.”
Have you heard much about plans for Courtney in the longer-term?
“There’s certainly a lot of ways it could go and a lot more for Courtney to give. Definitely for now, if we’re playing the truth of the situation, she’s going to be sad for a bit.
“We don’t want her to just be fine straight away, because it’s not the reality of it. We’ll see her low and vulnerable for a while.”
Did Luke get a good send-off from the cast?
“Yeah, he had a big leaving party. I was his ‘wife’, so I took on the responsibility to plan it, which was so stressful! (Laughs.) But it was so much fun and it was an honour to do that for him.
“I feel like I’m grieving for him in real life now, although we will stay in touch. Our friendship will definitely carry on. I can’t wait to see what he goes on to do.
“Luke is a great writer too. He’s got a lot of talents. I’m sure he’ll absolutely fly and do really well. I’m just excited to see what he does, as I’m his biggest fan.”
Will we see more of Courtney with the Lomax family?
“Yeah, I love the Lomaxes and working with Kirsty (Leela) and Ruby (Peri). They were involved in the wedding episodes, so it was nice to work with them more again. I hope Courtney uses Leela and Peri as a help throughout this.”
“That would be amazing. Courtney is also a teacher at the school, so it would be appropriate. We’re working with all those young cast, which is such a joy because they’re so talented. I’ve had a few scenes with Billy (Sid) recently within the school and it’s so much fun.
“I’d love to do more of that. I know that story is going to be really exciting and important and I hope to be part of it.”
How did you feel about getting a big soap wedding?
“It was so exciting. Those scenes are always so fun to film, because there are so many guests and you have supporting artists as well. So often in a soap you do two-hander scenes, or there’ll be three or four people in a scene at the most. To see how it works on that bigger scale was exciting.
“Obviously with any soap wedding there’s drama that comes along with it, so it was exciting to play that too. The scenes require long days, so it was tiring but I really enjoyed it. It was good to be able to work with different people too.”
Hollyoaks airs weeknights at 6.30pm on Channel 4, with first look screenings at 7pm on E4.
The percentage of claimants who complain about ATOS (now known as IAS) has risen over the last 12 months and almost doubled in the course of the last four years.
In answer to a parliamentary question last week, Justin Tomlinson revealed that in 2019 there were 6,140 complaints against ATOS, who carry out PIP health assessments on behalf of the DWP.
This represents 0.91% of the total number of assessments carried out by ATOS last year.
The figures for previous years were:
2016 0.49%
2017 0.69%
2018 0.8%
Tomlinson also revealed that there were 3,640 complaints last year against Maximus (also known as CHDA), who carry out work capability assessments. This represents 0.45% of the total number of assessments.
Claimants who complain to the Independent Complaints Examiner (ICE) about the DWP are having to wait on average over a year before their case is even looked at, it was revealed last week.
ICE is an independent body which looks at complaints where a claimant is not happy with the response they have received when complaining directly to the DWP or one of the organisations that work for it, such as health assessment providers.
ICE has the power to award small amounts of compensation, usually up to £200, as well as make recommendations about how the DWP should deal with similar matters in the future.
However, in response to a parliamentary question last week, it was revealed that:
“In the first six months of 2019 (January to June 2019) it took the Independent Case Examiner’s Office an average of: 59 weeks to commence an investigation (from the point at which the complaint was accepted for examination); and 23 weeks to complete an investigation (from the point at which it was allocated to an investigation case manager).”
That means that on average, if a claimant managed to get ICE to take up their complaint, it took an average of 82 weeks, well over a year and a half, to get a decision.
The number of complainants contacted within 10 working days to discuss next steps is now at 93.9%
And the number of complaints resolved within 8 weeks of accepting them for examination is at 76%.
But the number of investigations cleared within the target of 20 weeks from the start of the investigation is only at 35%. This is still an improvement on the 30% it stood at six months earlier.
Tellingly, there does not appear top be any target at all for how long it takes between accepting a complaint for investigation and actually beginning the investigation. Which is why ICE can keep claimants waiting over a year before even starting work.
A mother who was wrongly accused of trying to kill her disabled daughter by medical staff is to sue the hospital where the claims were made.
Kirsteen Cooper was accused of causing infections and cutting a feeding tube attached to her daughter Baillie.
This led to police charging her with attempted murder and access to her daughter being restricted for two years.
After accusations were disproved by medics, the charges were dropped.
Now Mrs Cooper, 42, is preparing a legal case against NHS Greater Glasgow and Clyde.
‘The worst thing you could imagine’
She claims she “wanted to die” after being wrongly accused. She was arrested and placed in a cell overnight after staff at the Royal Hospital for Children (RHC) in Glasgow wrongly accused her of stealing blood from her daughter Baillie “to make her anaemic”.
Speaking of the moment police arrested and charged her on 20 July 2017, Mrs Cooper told BBC News: “My first reaction was that I didn’t want to be here any more.
“Baillie and my children are my absolute world, my complete life. So to be accused of anything, let along the worst thing you could imagine in the world, and the most special person to you in the world, you just feel like your life is not worth living if that’s what someone can accuse you of.”
The hospital accused Mrs Cooper of having suspected fabricated induced illness (FII), formerly known as Munchausen’s syndrome by proxy.
According to the NHS website, FII is a rare form of child abuse where a parent or carer exaggerates or deliberately causes symptoms of illness in the child.
Mrs Cooper said that in January 2017, she and her husband Craig were worried that Baillie, who has cerebral palsy, was continually catching infections in hospital. They had concerns about the hospital which they believed were a factor in their daughter being unwell.
They made a formal complaint to the hospital.
She said: “In February, Baillie’s feeding tube leaked in hospital and they accused me of deliberately cutting her tube so she couldn’t be fed.
“That night, social work appeared at Baillie’s room and removed us from the hospital saying we were not allowed to be with her any more. And that went on for two years.”
Baillie was discharged from hospital in May 2017 and was to stay at her aunt and grandmother’s home. She was not allowed to return to the family home where her two older sisters remained and her parents were only allowed supervised contact.
In July Ms Cooper was questioned by police.
She said: “I was arrested and charged with the attempted murder of Baillie. I was put in a cell overnight then taken to court.”
Several months later, criminal charges were dropped and no further action taken.
During the course of the investigation, Mrs Cooper was only allowed to see her daughter in supervised visits of two hours at a time, which was increased over several months to 10 hours.
It is the missed time with her young daughter that she says has made her go ahead with the civil case.
Lawyers for the Cooper family are expected to serve a writ on NHS Greater Glasgow and Clyde this week, reported the Daily Record on Monday.
Mrs Cooper said: “What we have all been put through as a family is unbelievable.
“The reason I want to pursue it is because the time and the memories we lost with Baillie we can never get back. Special times like starting school that we were not allowed to be on our own with her.
“We want to ensure this never happens to another innocent family. We want things to be put in place that before children can be removed from their parents, there must be some kind of solid evidence of why it is happening so children don’t have to go through this trauma.
“We watched Baillie go through trauma every night in hospital for months – hysterical crying being taken away from us.”
Baillie was admitted to RCH in December 2016.
RCH is part of the £842m Queen Elizabeth University Hospital (QEUH) campus in Glasgow, which is the focus of a public inquiry over safety fears and patient deaths from infections. The hospital is currently under “special measures” from the Scottish government which allow for greater supervision of its operation and performance.
An NHSGG spokeswoman said: “We are unaware of any legal proceedings. The board does not comment on individual legal cases.”
The family is now rebuilding their lives.
Mrs Cooper fears she will never fully recover from the ordeal says she is still trying to come to terms with what happened.
She said: “We just feel like information wasn’t gathered properly, the relevant people weren’t spoken to when they should have been spoken to at the time, and it has all gone a lot further than anybody would have anticipated.”
Charities have called on the government to speed up a promised review of welfare support for terminally ill patients after it emerged that 2,000 people have died over the past six months while waiting for benefit payments.
They accuse the government of making practically no progress in the six months since it announced a “fresh and honest evaluation” of the benefit system would ensure it was more responsive to the needs of patients nearing the end of their life.
Campaigners had demanded law changes after thousands of people who had just months to live were unable to access benefits, often finding their claims bogged down in bureaucracy and unnecessary health assessments.
Current benefit rules state that claimants can only get their benefits fast-tracked if a doctor says they have less than six months to live – campaigners argue this is too restrictive, and want the definition widened to ensure benefits can be accessed as soon as a terminal illness diagnosis is made.
Government figures suggest 10 people a day in England, Wales and Scotland die before receiving their Personal Independence Payment benefits – a sum designed to help ill and disabled people with the extra costs of their conditions.
The then work and pensions secretary Amber Rudd promised in July to review the policy in consultation with claimants and doctors. She said she wanted people “to have confidence in what we do at the Department of Work and Pensions (DWP), ensuring no one is suffering unnecessary hardship at this especially difficult time”.
However, charities are becoming frustrated with what they consider the glacial pace of progress at the DWP, especially as the Scottish government is introducing a law change this year to ensure anyone diagnosed with a terminal illness can get fast access to benefits.
Matthew Reed, chief executive of the Marie Curie charity, said the new government’s clear Commons majority meant it had “no excuse not to act fast to stop 10 more people dying every day without the support they need. It’s time now to get this done.”
Jo Lynton spent months unsuccessfully trying to claim benefits for her husband, Mark, before he died in July 2019 after just 23 weeks with motor neurone disease. “It was very frustrating, very upsetting and emotionally it was a very difficult time,” she said.
“Claiming benefits was horrendous. We were entitled to claim income support of £50 a week and council tax benefits. I couldn’t get either of those because I couldn’t get anybody from universal credit to answer the phone.
“We were on hold for 50-60 minutes and I couldn’t be on hold for 50 or 60 minutes because my husband could choke on his own saliva so what was I supposed to do? Tell him to choke quietly as I’m waiting on the phone to get £50 a week?
“I would just sit and cry because there was nothing I could do. We needed the support and we just couldn’t get it and there was nothing I could do about it.”
Sally Light, chief executive of the Motor Neurone Disease Association, said: “The announcement of the review into access to benefits for people with terminal illness, including MND, gave us some optimism that things would change. But, six months on, we are no further forward and people are still dying without the financial support they need and are entitled to.”
A DWP spokesperson said: “We recognise how devastating dealing with a terminal illness can be, and the impact it can have on families. This evaluation of support for people nearing the end of life is an absolute priority for us.
“This vital work is well under way and we are working closely with medical professionals and charities like Motor Neurone Disease Association and Marie Curie.”
Five thousand people died before they could be reimbursed for a government error that left chronically ill and disabled benefit claimants thousands of pounds out of pocket, it has emerged.
Approximately 70,000 claimants were originally estimated to have been underpaid about £340m between 2011 and 2014, after being transferred from older benefits on to the employment and support allowance (ESA) during a government overhaul of incapacity benefits.
Figures released on Thursday, which showed 5,000 ill and disabled people died before receiving the money they were owed, were described as a “national scandal” by Marsha de Cordova, the Labour MP and disability rights campaigner.
The government has been conducting a review of cases potentially affected by the error, which arose when some people who were receiving incapacity benefit and severe disablement allowance had their claims converted to contributory ESA.
However, officials at the Department for Work and Pensions (DWP) failed to follow their own legal guidelines governing the transfer process, meaning that in many cases they failed to properly check claimants’ full entitlements. The review has been looking through 600,000 potential cases of those who missed out. Some 122,000 people have now been repaid £5,000 each on average, according to the new figures.
The ESA failure was overseen by the then Conservative former secretary of state for work and pensions, Iain Duncan Smith, who was in post for all but the last few months of the period covered by a damning public accounts committee (PAC) report. The current housing minister, Esther McVey, was a DWP minister between 2013 and 2015.
Evan Odell, a researcher at Disability Rights UK, said: “That 5,000 disabled people were denied the proper support to live independently before they died is scandalous, as is the 112,000 people who had had to wait years for these errors to be corrected.
“To make matters worse, the problems with the employment and support allowance system that have led to hundreds of millions of pounds of arrears payments are still present. Seventy-five per cent of ESA applicants who appeal DWP decisions to the social security tribunal win; this case is merely one more piece of evidence showing how ESA is not fit for purpose.”
Marsha de Cordova MP said: “It is a national scandal that a decade of delay has meant that 5,000 ill and disabled people have died before receiving the money that they were owed as a result of ESA underpayments.
“The government must now speedily complete the remaining reassessments for the thousands of people still waiting so that everyone who has lost out receives payment as quickly as possible.
“The Conservatives have consistently failed sick and disabled people. The continued delay in righting this wrong is disgraceful.”
The department said it has finished processing 97percent of potentially affected cases and so far around one percent of these have resulted in an arrears payment in respect of a claimant who has passed away.
A DWP spokesperson said: “We have worked hard to ensure that anyone affected by this issue receives the benefits they are entitled to, and in the minority of cases where a claimant has sadly died we have paid their next of kin.”
The cost of fixing the error, which the PAC report said stemmed from a string of avoidable management failures, was expected to cost the DWP at least £340m in back payments to claimants and £14m in administrative costs.
The figures showing that 5,000 of those affected date from 12 January 2020. The DWP expects them to change as staff continue to work on the exercise to check potentially affected cases.
The DWP say that they have begun reassessing every one of the 600,000 claimants who may be eligible for a back-payment of employment and support allowance (ESA).
The underpayments came about because the DWP failed to award income-related ESA to many thousands of claimants who were transferred from incapacity benefit to contribution-based ESA from 2011 onwards.
581,000 claimants have now had their assessment completed.
In total £589 million has been paid out so far, with payments averaging £5,000 per claimant.
Around 50,000 claimants were not contacted during the reassessment process because the DWP say it was clear from the paperwork that they were not entitled.
The DWP also say that an undisclosed number of claimants did not respond to multiple attempts to contact them over an eight week period and so their cases were closed.
If those claimants do subsequently get in touch their case will be reopened.
If you believe that you missed out on payment of premiums such as the enhanced disability premium when you were transferred from IB to ESA and you have not been contacted by the DWP you should get advice or contact the DWP directly.
Sadiq Khan has kickstarted his bid for a second term as London mayor by pledging free travel on the city’s transport for anyone accompanying a disabled person.
The promise came on the same day as rail passengers nationally were hit with annual fare increases, this year averaging 2.7%.
The pass would provide free travel for anyone accompanying a disabled person on all services including the tube, Overground and buses.
Although he is consistently polling better than his closest challenger, the Tory candidate Shaun Bailey, over the last 12 months Khan has been criticised for the capital’s rising crime rates and knife crime. His personal popularity ratings nosedived to their lowest ever in the summer of 2019.
Travel is a traditional battleground for mayoral candidates, with transport and making the capital more accessible a key part of Khan’s pitch to voters before May’s election.
Khan said: “My job is to stand up for all Londoners. I want to ensure everyone in our city can access our fantastic transport network, and that travel in the capital is inclusive and affordable.
“The companion pass is intended to make a big difference to disabled Londoners. It will help them to move around our city more easily and take advantage of all the fantastic opportunities London has to offer.
He boasted of freezing Transport for London fares for four years in a row under his leadership and rolling out his “hopper” bus fare, which provides unlimited travel within a one-hour period.
He said if he won the 2020 race he would instruct TfL to work closely with disability and accessibility groups as well as London councils to draw up details of the proposal.
It is expected that anyone with a disabled persons’ or older persons’ freedom pass who also requires a companion in order to travel will be able to apply for the new pass. It would be issued to the person who needs assistance so it could be used by different family members, friends or carers.
Alan Benson, the chair of Transport for All, which provides advice for disabled transport users, said: “Transport for All have been calling for a companion pass for disabled people on public transport for many years, so we are delighted that this policy will lead Sadiq Khan’s campaign. The rights of disabled people are rarely put front and centre by policymakers, so this is a welcome change.
“The provision of a companion pass is an access requirement, in the same way as a lift is; without it, many disabled people simply cannot travel as they can’t travel alone.”
Khan described the battle for London as a two-horse race against Bailey. YouGov/Queen Mary University London polling this autumn put Khan on 45%, Bailey on 23% and the independent candidate Rory Stewart – a former Tory secretary of state – on 13%.
The Liberal Democrat candidate, Siobhan Benita, will hope to improve on the party’s showing in 2016 when it achieved 4.6% of the vote. The Green candidate, Siân Berry, who is running in 2020, was third at the last election with 5.8% of the vote.
The number of parents and carers taking councils to tribunal for refusing support to children with disabilities has almost tripled in the past five years.
Since 2014, legal battles over decisions – which include not assessing children’s particular needs or providing them adequate help at home or school – have increased by 176%.
The figures from 2014-15 and 2018-19, which the Guardian acquired through Freedom of Information Act requests, are from 71 local authorities in England and Wales.
Educational support is offered to all children with special educational needs and disabilities (Send) at schools and colleges. However, councils can create education, health and care plans (EHCPs) for those with more complex needs. EHCPs are legal documents that describe a child or young person’s needs and set out the extra help that will be provided by the local authority to meet them.
Dedicated teaching assistants, access to speech therapists and placements at schools that have the provisions to look after children with Send – such as smaller class sizes and specialist facilities – are among the resources that can be written into a plan.
Sarah White, head of policy at Sense, a charity for people with complex disabilities, criticised the knock-on effects that inadequate educational support could have on children with Send further down the line.
“If children aren’t getting the support that they need, they’re potentially not able to attend school. Or, if they’re attending school, they might not be getting the level of support they need so that can have an impact on educational progress and potentially their ability to make friends and engage and take part in activities,” said White.
In 2018-2019, local authorities were taken to tribunal 3,274 times, in comparison with 1,186 times over 2014-15.
council, the largest local authority in Europe by population, was taken to Send tribunals 985 times between 2014 and 2019, which was more than any other local authority. Cases against the council increased by 273% over the period.
A spokesperson for the council said: “While the vast majority of appeals are resolved without the need for a hearing, we recognise that there are long-standing issues, particularly with regard to communication with families and waiting times for assessments, which we are working to address.”
Kent county council, which participated in 859 tribunal hearings, and Essex county council, which was taken to tribunal 829 times – a 219% increase in five years – also had among the largest number of proceedings. A spokesperson from Essex council said the increase corresponded with rising numbers of children with Send.
Although many appeals against council decisions are resolved before the hearing date, the process can be lengthy and expensive for parents.
Of the hundreds of parents and guardians who responded to a Guardian callout on Send tribunals, many said they had spent tens of thousands of pounds on legal representation to bolster their chances of winning, despite the fact it is not common practice to have a lawyer at hearings.
A mother from Derby said her family had spent over £200,000 taking the city council to three tribunals andthe high court to ensure suitable educational provision for her autistic daughter.
Others described the significant mental strain that had been placed on both them and their children while they waited to receive support.
A father from the Isle of Wight said his 13-year-old son had tried to end his life on a number of occasions after years of being bullied and feeling isolated at a mainstream school without assistance.
Earlier this year, three families brought action against the government at the high court, claiming its budget decisions had left councils unable to fulfil their obligation to provide an education to children with Send. But they lost after Mr Justice Lewis ruled there had been “no unlawful discrimination”.
Data from the Department for Education showed the number of children and young people with Send statements or EHC plans has increased by 34,200 (11%) since 2018.
Reforms introduced in 2014 to improve the experiences of Send pupils were criticised by a cross-party committee of MPs earlier this year for being poorly implemented.
However, the last year has seen a radical rethink in our understanding of how to design for disability. The rise in adaptive fashion – clothing specifically designed for those with disabilities and chronic conditions – reflects newfound awareness of inclusive design. In fact, searches for adaptive clothing saw an increase of 80% over 2019, according to global fashion search platform Lyst. This encompasses everything from discrete elasticated waistbands, which are pinch-free when seated, to magnetic fastenings for independent dressing. All aspects of the garment are fabricated with the wearer’s everyday challenges in mind. So, for many of the UK’s 13.9 million disabled people, it is welcome progress.
The pioneers of adaptive fashion
As the first mainstream brand to launch an adaptive fashion line, Tommy Hilfiger has illustrated – with aplomb – the power of creating stylish clothing for consumers who have been historically overlooked. Unveiled at New York fashion week in September, the latest Tommy Hilfiger X Zendaya collection features 10 adaptive styles. Think 70s-style metallic gold turtleneck with hidden zipper and houndstooth blazer featuring magnetic closures.
Likewise, earlier this year Nike launched their Air Zoom Pegasus 35 FlyEase trainers in the UK – a model with revolutionary adaptive technology. A wraparound zip at the back of the shoe connects to cables that tighten the laces – allowing the wearer to put on the shoe with one hand. With the 2020 Paralympics on the horizon, Nike recently announced a new partnership with Handsfree Labs Inc, a pioneer in hands-free footwear technology. This whole endeavour was sparked by a letter from an American student with cerebral palsy sharing his dream of tying shoe laces independently.
Consumer demand was also the catalyst for Seasalt’s Easy On line, which launched in March after customers of the Cornish-lifestyle brand requested inclusive options. The adaptive collection features sleeve loops to help pull garments on, large zip-pulls and magnetic fastenings on their popular styles.
New start-ups offering disability-friendly fashion
In February, a Manchester-based start-up Kintsugi joined the adaptive fashion market. Its name draws on the Japanese art form of repairing broken pottery with gold lacquer—reflecting the brand’s philosophy that all individualism is beautiful. The founder Emma McClelland believes we cannot underestimate the importance of chic yet accessible clothes: “The brand is about empowerment – it’s a middle finger to the fashion industry’s reluctance to represent people who fall outside its narrow limits.”
This idea of design bias is also the driving force of FFORA, a new accessory line for wheelchair users. Since July, FFORA has launched leather bags, lifestyle products and minimalist attachments for mobility aids. Created by Welsh-born Lucy Jones, whose thesis collection for disabled people landed her on the Forbes 30 Under 30 list – it is a masterclass in modern, inclusive fashion.
Likewise, a new London-based lingerie brand Elba – “Able” spelt backwards – focuses on front-fastening bras for individuals with limited mobility or difficulty dressing. Their patented magnetic closure is concealed at the front to balance the need for functionality with sleek styling.
Designing for disability
This year, ongoing conversations about diversity in fashion have provoked questions such as: how can brands better cater to all minority groups? But when it comes to designing for a wide range of disabilities, this simple question is still considered a Herculean task. The design process is multifaceted and often demands medical input.
According to Stephanie Thomas, disability stylist and founder of Cur8able, there are three vital requirements – a garment must be accessible when dressing, medically safe, and all-importantly look fashionable. Ten years in the making, her trademarked Disability Fashion Styling System has become the definitive guide for adaptive fashion design. “As a woman with a disability I want to shop brands that are in line with my aesthetic … I like adaptive clothing that’s beautifully designed with disability in mind.”
A financially lucrative market
For many forward-thinking brands, offering inclusive fashion is not just a moral decision. It is based on the knowledge that disabled shoppers represent £249bn of spending power. Known as the “purple pound”, they remain the largest untapped consumer market. This year, Coresight Research even estimated the adaptive clothing market will reach $288.7bn globally in 2019. But, more than ever, consumers want to align themselves with brands that make a positive impact. Whether it is sustainability or inclusivity, social consciousness is the hottest trend right now.
What’s next for adaptive fashion?
In the last year, activists such as Selma Blair and Sinéad Burke have proved that disability and style are not mutually exclusive. But the high street does not yet reflect this shift. Unlike the US, where a handful of mainstream stores have adaptive lines, UK retailers remain slow to enter the market. Designers must also address the unmet demand for disability-friendly workwear and occasionwear –because even sport-luxe sweatpants can’t take you everywhere.
A disabled woman has been awarded £5,000 in an out-of-court settlement after being called a “lying bitch” by a welfare official in formal legal papers after challenging a decision to cut her disability benefits.
The claimant, who suffers from a degenerative condition affecting her heart and lungs, took legal action against the Department for Work and Pensions (DWP) in the summer after it accepted the slur had caused her “severe distress and hurt”.
The “lying bitch” phrase was discovered by her welfare rights adviser in the text of DWP papers submitted to her Personal Independence Payment (PIP) benefit appeal tribunal. The submission suggested her claim of restricted mobility was false.
She formally complained to the DWP, and after the Guardian reported the “lying bitch” comments in March, the DWP accepted it had breached its professional standards and offered her a “special consolatory payment for gross inconvenience” of £250. It also reversed its earlier decision to reduce her PIP payment.
The claimant, a mother from south London, subsequently sued the DWP under the Equality Act 2010, claiming direct discrimination and harassment. After initially refusing a £3,000 offer from the DWP, she accepted £5,000 plus legal costs and an apology.
“I just want to put it all to bed now. I didn’t get any answers from the DWP about why it happened or how it would prevent it happening again,” she told the Guardian. “I have done what I have done to prove a point.”
She felt the DWP had constantly mistreated her, belittled her and refused to accept medical evidence of her condition. The scheduled tribunal had been the third time in five years she had been forced to appeal to overturn incorrect decisions relating to her entitlement to PIP.
It is understood that a civil servant has been dismissed as a result of the incident, which the DWP regards as gross misconduct. Why the slur was inserted is not clear. The claimant’s welfare advisor, Derek Stainsby of Plumstead Community Law Centre, previously called it evidence of “a canteen culture of contempt” in the DWP.
Stainsby had brought the comments to light with the agreement of the claimant after discovering them buried in DWP court papers. They were inserted into a passage which implied that because she was a full-time carer, her claims of restricted mobility must be contrived.
The DWP official had written: “In this lying bitches [sic] case she is receiving the mid-rate carers [sic] allowance component for providing day time supervision to another disabled person. The tribunal may wish to explore this further.”
The DWP declined to comment on the out-of-court settlement, although it had previously written to the claimant apologising for the failure of its customer service standards and the “severe distress and hurt caused to you by the unprofessional comments made in the appeal submission”.
Robyn Taylor, a solicitor for Deighton Pierce Glynn, who represented the claimant in the legal action, said: “Although the facts of the case are unusual, it does highlight a general issue that disabled people are experiencing a hostile environment in the benefits system.”
Daphne Hall, the vice-chair for the National Association of Welfare Rights Advisors, said: “Nothing will take away the distress caused to the claimant in this case but we are pleased that the DWP has acknowledged this and agreed to compensate her.”
It is understood that the £5,000 settlement will be treated as a personal injury payment rather than capital or savings, meaning that the claimant will not have it deducted from future benefit payments. The DWP has a £6,000 savings threshold, above which recipients of some benefits would see their benefit income clawed back at the rate of £1 a week for every £250.
The Tribunals Service is introducing further changes to the appeal process as part of its drive to move tribunals online.
New paper appeal form
Later this month a new paper appeals form, the SSCS1PE, will replace the current SSCS1 form for people who do not make use of the ‘Appeal a decision online’ service.
The layout of the new paper form will mirror the sequence of screens used in the online form. This will allow appeal forms to be bulk scanned and digitised by the Tribunals Service and then forwarded to the DWP by email.
The new forms will be sent to a different address, that of the bulk scanning supplier.
Old forms sent to the old address will still be accepted, but will take longer to process.
Submit Your Appeal (SYA)
The Submit Your Appeal (SYA) service, which allows claimants to submit their appeal online rather than on paper, already accounts for over half of all new PIP, ESA and UC appeals.
There is now a ‘Save and Return’ feature which allows claimants to pause and revisit part completed appeal requests later.
DWP digital submissions
The Tribunals Service and the DWP have been working on a system which will allow the DWP to make their appeal submission entirely in digital format. The system is currently being tested and is expected to be rolled-out across the country this year.
Manage Your Appeal (MYA)
Manage Your Appeal (MYA) will allow appellants not only to submit and track their appeal online but also to carry out other actions that are currently only possible on paper. This will include submitting further evidence and withdrawing an appeal. Appellants will still be able to write letters and submit paper evidence even if they have signed up for MYA. The new service is due to go live soon.
Figures released by the DWP last month show that almost six out of ten new employment and support allowance (ESA) claimants were placed in the support group.
Statistics for the quarter to June 2019 show that, for new claimants:
58% were placed in the support group, up 5% on the previous quarter.
17% were placed in the work-related activity group (WRAG), down 4% on the previous quarter.
26% were found fit for work, unchanged from the previous quarter.
However, the vast majority of ESA assessments are now repeat assessments rather than new claims.
In the most recent quarter, 85% were repeat ESA assessments, 15% were new ESA claims and less than 1% were incapacity benefit reassessments.
For repeat ESA assessments:
80% were placed in the support group
13% were place in the WRAG
6% were found fit for work.
The number of mandatory reconsiderations in relation to ESA has plummeted in recent years. It was at its highest in March 2017, with 22,000 requests. In October 2019 it had fallen to just 3,500.
The number of ESA appeals has fallen even more massively since the introduction of mandatory reconsiderations in 2013.
In the quarter to September 2018 there were just 600 appeals heard in relation to fit for work decisions, compared to almost 15,000 prior to the introduction of mandatory reconsiderations.
The success rate for personal independence payment (PIP) and employment and support allowance (ESA) appeals has risen yet again, statistics published last month by the Tribunals Service reveal.
The success rate for claimants who appeal against a PIP decision now stands at a colossal 76%. The rate has risen by 1% per quarter every quarter since the beginning of 2018/19.
For ESA, the figure is even higher. The success rate has jumped 2% since the last quarter and now stands at 77%.
For DLA the success rate is 69%.
For UC the figure is 61%.
However, the total number of appeals being lodged has fallen considerably. Overall, the number of social security appeals has dropped by 22%, compared to the same quarter a year ago.
The most dramatic fall has been in ESA appeals, which have fallen by 54%. In part, this can be explained by the replacement of some ESA awards with UC.
But PIP appeals have also fallen by 15%.
PIP appeals now make up 60% of all social security appeals, with ESA accounting for a further 16%.
The average time taken for a social security appeal to be dealt with is now 30 weeks, an increase of one week on the same period last year.
Almost half of disability living allowance (DLA) to personal independence payment (PIP) claimants have had their benefit reduced or stopped altogether according to data published by the DWP last month.
According to the statistics, by the end of October 2019, 1,424,000 DLA reassessment claims to PIP had been cleared.
Of these, 47% had their benefit reduced or stopped.
The full breakdown of the figures is as follows:
556,000 (39%) had their benefit increased
200,000 (14%) had their benefit left unchanged
306,000 (22%) had their benefit decreased, but not stopped altogether
293,000 (21%) were disallowed after referral for assessment
58,000 (4%) were disallowed before referral for assessment
9,000 (1%) withdrew their claim.
413,000 (29%) of claimants were awarded PIP at the highest rate (enhanced daily living and enhanced mobility components). This compares with 226,000 (16%) under DLA.
Claimants with learning difficulties were the most likely to receive an increased award (54%).
Claimants most likely to have their awarded stopped were those with psycho neurosis (40% stopped) and psychosis (38% stopped).
Figures released by the DWP last month reveal that the vast majority of new personal independence payment (PIP) claimants receive only a short-term award of up to two years.
According to the figures, 71% of new PIP claimants were given a short-term award of 0-2 years in October 2019.
Just 7% of new claimants get an ongoing award, meaning that they will have just a ‘light-touch’ review after 10 years.
By comparison, 54% of DLA to PIP claimants get an ongoing award.
New claimants with psychiatric disorders are most likely to get a short-term award, followed by claimants with musculoskeletal conditions.
New claimants with a malignant disease are the least likely to get a short-term award and the most likely to claim under the special rules for terminal illness.
The success rate for new personal independence payment (PIP) claims continues to plummet according to figures released by the DWP last month. Only 30% of new claimants got an award in October 2019, down from an average of 42%, with no explanation from the DWP as to why this is happening.
Back in September 2019 we revealed that the latest figures showed that the award rate for new claims was falling. Since then the decline has become even more pronounced.
In the last three months for which figures are available the award rates for all new claims, excluding terminal illness, has fallen dramatically:
August 2019 37%
September 2019 32%
October 2019 30%
The overall award rate since PIP began is 42%, so the current level is extremely low.
For new claims where the claimant made it as far as an assessment, so excluding all those who were removed at an earlier stage, the success rate is also on a downward path.
August 2019 49%
September 2019 47%
October 2019 47%
The overall award rate for this group since PIP began is 57% so, again, the current level is considerably lower.
In fact, as we noted in September, awards following assessment have been on an unusually steady downward path for many months.
In January 2018 the success rate was 57%. Since January 2018 there has been only a single month when the award rate went up. Apart from March 2019, for every successive month the award rate has either remained the same or fallen.
The fact that award rates are falling so steadily suggests a definite drive on the DWP’s part to methodically reduce awards.
It appears to be a two pronged attack on claimants.
The first prong is to remove a much higher number of claimants before they get as far as an assessment.
This could involve such measures rejecting forms that are allegedly received late or not at all.
The second prong is to make the assessment itself increasingly difficult to pass, but without actually changing the criteria. This could be done, for example, by ensuring that health assessors had their work reviewed in such a way as to make it clear that criteria had to be applied as harshly as possible.
At this stage, this is merely speculation, we have no evidence to explain why award rates are dropping.
All we have is hard evidence that award rates for new claims are falling remorselessly and the DWP is offering no explanation for the changes.
Meanwhile award rates for DLA to PIP reassessments have remained much steadier.
August 2019 69%
September 2019 68%
October 2019 69%
The overall award rate for this group since PIP began is 71% so although there has been a fall, it has been much smaller. A big drop in award rates for this group would have been much more quickly noticed and politically risky.
But the fact that the same assessment system is producing continually falling rates for new claims and stable rates for reassessments adds to the suspicion that something underhand is happening.
Same Difference officially returns from today, slightly later than planned. We plan to bring you some disability news highlights from the first half of January today, along with the latest news and benefit information.
We hope you will continue to find useful, interesting content here in 2020 and beyond.
Same Difference is taking an extended end-of-year break this year.
We will be offline from today and will return on January 16th, by which time we hope to have a new UK Prime Minister!
Brexit and the General Election made 2019 a slow year for disability news. However we hope that 2020 will be better. Next year we will, as we always do, try our best to bring you news, views and information about the disability world and the issues that affect us all.
For now, Season’s Greetings, readers. Have a safe, healthy and happy holiday season, whatever you are celebrating.
It means the Russia flag and anthem will not be allowed at events such as the Tokyo 2020 Olympics and football’s 2022 World Cup in Qatar.
But athletes who can prove they are untainted by the doping scandal will be able to compete under a neutral flag.
Wada’s executive committee made the unanimous decision in a meeting in Lausanne, Switzerland.
It comes after Russia’s Anti Doping Agency (Rusada) was declared non-compliant for manipulating laboratory data handed over to investigators in January 2019.
It had to hand over data to Wada as a condition of its controversial reinstatement in 2018 after a three-year suspension for its vast state-sponsored doping scandal.
Wada says Rusada has 21 days to appeal against the ban. If it does so, the appeal will be referred to the Court of Arbitration for Sport (Cas).
Wada president Sir Craig Reedie said the decision showed its “determination to act resolutely in the face of the Russian doping crisis”.
He added: “For too long, Russian doping has detracted from clean sport. The blatant breach by the Russian authorities of Rusada’s reinstatement conditions demanded a robust response.
“That is exactly what has been delivered.
“Russia was afforded every opportunity to get its house in order and re-join the global anti-doping community for the good of its athletes and of the integrity of sport, but it chose instead to continue in its stance of deception and denial.”
But Wada vice-president Linda Helleland said the ban was “not enough”.
“I wanted sanctions that can not be watered down,” she said. “We owe it to the clean athletes to implement the sanctions as strongly as possible.”
A total of 168 Russian athletes competed under a neutral flag at the 2018 Winter Olympics in Pyeongchang after the country was banned following the 2014 Games, which it hosted in Sochi. Russian athletes won 33 medals in Sochi, 13 of which were gold.
Russia has been banned from competing as a nation in athletics since 2015.
Despite the ban, Russia will be able to compete at Euro 2020 – in which St Petersburg will be a host city – as European football’s governing body Uefa is not defined as a ‘major event organisation’ with regards to rulings on anti-doping breaches.
How did we get here?
Rusada was initially declared non-compliant in November 2015 after a Wada-commissioned report by sports lawyer Professor Richard McLaren alleged widespread corruption that amounted to state-sponsored doping in Russian track and field athletics.
A further report, published in July 2016, declared Russia operated a state-sponsored doping programme for four years across the “vast majority” of summer and winter Olympic sports.
In 2018, Wada reinstated Rusada as compliant after the national agency agreed to release data from its Moscow laboratory from the period between January 2012 and August 2015.
However, positive findings contained in a version courtesy of a whistleblower in 2017 were missing from the January 2019 data, which prompted a new inquiry.
Wada’s compliance review committee (CRC) recommended a raft of measures based “in particular” on a forensic review of inconsistencies found in some of that data.
As part of the ban, Russia may not host, or bid for or be granted the right to host any major events for four years, including the 2032 Olympic and Paralympic Games.
In my work as a journalist I am lucky enough to meet some brilliant people and learn about exciting advances in technology – along with a few duds.
But every now and then I come across something that resonates in a deeply personal way.
So it was in October 2018, when I visited a company called Medopad, based high up in London’s Millbank Tower.
This medical technology firm was working with the Chinese tech giant Tencent on a project to use artificial intelligence to diagnose Parkinson’s Disease.
This degenerative condition affects something like 10 million people worldwide. It has a whole range of symptoms and is pretty difficult to diagnose and then monitor as it progresses.
Medopad’s work involves monitoring patients via a smartphone app and wearable devices. It then uses a machine learning system to spot patterns in the data rather than trying to identify them by human analysis.
In its offices we found one of its staff being filmed as he rapidly opened and closed his fingers – stiffness in these kind of movements is one of the symptoms of Parkinson’s.
As we filmed him being filmed, I stood there wondering whether I should step in front of the camera and try the same exercise.
For some months, I had been dragging my right foot as I walked and experiencing a slight tremor in my right hand.
Getting to grips
I had first dismissed this as just part of getting older, but had eventually gone to see my GP.
She had referred me to a consultant neurologist, but at the time of filming I was still waiting for my appointment.
As we left Medopad, I clenched and unclenched my fingers in the lift and reflected on what I had seen. A few days later my coverage of the project appeared on the BBC website.
Three months on, in January this year, I finally met the consultant.
She confirmed what I had long suspected – I was probably suffering from idiopathic Parkinson’s Disease. The “idiopathic” means the cause is unknown.
As I got to grips with the condition and started a course of medication, I quickly found out that there are all sorts of unknowns for people with Parkinson’s.
Why did I get it? How quickly will the various symptoms develop? What are the hopes of a cure?
There are no reliable answers.
My response has been to take a great interest in how the technology and pharmaceutical industries are investigating the condition.
Developments in artificial intelligence, coupled with the availability of smartphones, are opening up new possibilities, and this week I returned to Medopad to see how far it had progressed.
I asked the firm’s chief executive, Dan Vahdat, whether he had noticed anything that suggested I might have a special interest in Parkinson’s when I first visited.
“I don’t think we noticed anything specifically,” he said.
“But – and that’s weird for me to tell you this – I had this intuition that I wanted to get you to do the test.”
That, of course, did not happen but over the last year there has been a clinical trial involving London’s King’s College Hospital.
People with Parkinson’s have been given a smartphone app, which their relatives use to record not just that hand-clenching exercise but other aspects of the way they move.
“We think this technology can help to quantify the disease,” Dan explained.
No instant impact
“And if you can quantify the disease, it means you can see how the disease progresses.
“It gives you lots of opportunities, in terms of treatment adjustments, interventions at the right time, potentially screening a larger cohort of patients with the technology in ways that were not possible before.”
This made me think about my own situation.
Since February, I have been prescribed Sinemet – one of the most common Parkinson’s drugs – in the form of two tablets taken three times a day.
While some patients see an instant impact, I cannot say I notice much effect.
If anything my main symptom, dragging my right foot, has got slightly worse. When I see my consultant every four months we discuss whether the prescription should be adjusted, but it is difficult for me to quantify my symptoms.
Dan told me this was exactly the kind of scenario they are trying to address.
“We think you will end up having a more continuous observation via machine and the doctors can look at it remotely. And with that they will be able to adjust your treatment, if needed, because potentially right now you’re either overdosing or underdosing.”
I am now going to get access to the trial app and look forward to finding out what it says about me.
This is just one of many projects run by a variety of companies where real-time data is collected from people with Parkinson’s and other conditions via their handsets.
The search for a cure to Parkinson’s goes on. We appear to be a long way off, but in the meantime quantifying a condition like mine could do a lot to improve how I and many others cope with the symptoms.
What is exciting to me is that the smartphone revolution, which I have documented since watching Steve Jobs unveil the iPhone in 2007, now promises to change healthcare just as it has transformed many other aspects of our lives.
And I hope to continue reporting on that revolution for many more years.
When Lucy Edwards found out she had been chosen to be a presenter on Radio 1, she spent the day “jumping up and down like a bunny rabbit”.
“But then I was like, ‘Right, let’s do this’,” she says.
Lucy, 23, will be Radio 1’s first-ever blind presenter.
She will be taking over the late morning slot on 28 and 29 December and says she wants to create a show that feels “like family”.
“We’ve got my lovely guide dog Olga at my feet. We’ve got cute cuddly vibes. We’ve got some amazing tunes to be played.”
Lucy came through Radio 1 and 1Xtra’s search for new presenters – which will see 35 guests taking over the airwaves for five days over Christmas.
Among them are students, podcasters, a tattooist and a shop manager.
Lucy – who has a YouTube channel and is a freelance reporter and presenter – will have the honour of playing Radio 1’s greatest hits during her slots.
And there’s one artist she’s told her producers to get on the playlist.
“We need to have Katy Perry. Because I just think she’s a babe, really.”
‘A small, blind, ginger woman from Birmingham’
Lucy – who’s had to keep the job secret for a couple of weeks – says she feels “a sense of responsibility” as the first blind presenter on Radio 1.
“I’m so excited to be representing the blind crew, the disabled community,” she says.
“I personally think it’s really important to stand up and be out there as a blind person saying, ‘Hey, I am really really proud of my disability’.
“I’m proud to be who I am. I’m a small, blind, ginger woman from Birmingham.”
Lucy has a condition called Incontinentia Pigmenti which affected her eyesight at a young age.
She lost sight in her right eye at the age of 11, and in her left eye at 17.
Lucy has been presenting for a few years.
As well as her YouTube channel, she’s worked on the BBC’s Ouch podcast about living with disabilities and Radio 4’s programme In Touch – which is about blind and partially-sighted people.
So what advice does she have for others who want to become presenters?
“Always take every opportunity. You don’t want to miss anything that comes to you in life,” she says.
“I never want to say no to things – building your portfolio is really important.
“Get your microphone out where you are. Maybe even make your own podcast, your own YouTube channel.
There are approximately 1,130,000 adults with a learning disability in the UK, charity Mencap says.
The Electoral Commission estimates though that one in four of them are not registered to vote.
Cast members of Take A Bow, a drama group for adults with learning disabilities based in Wolverhampton, say politicians need to do more to communicate their policies to learning disability voters.
Like its title character, Teenage Dick is sneaky. What begins as a gleeful, knowing reboot of Richard III in an all-American high school, gradually skews darker. Richard, a disabled 17-year-old, connives against the school jock to become senior-year president – but like his Shakespearean predecessor his rise is also a fall.
Many of us are shadowed by our unhappy teenaged selves. American playwright Mike Lew hoped to “channel the frustrations of being that age. It’s a really vulnerable age, and where you put those insecurities was interesting to me. That age is so traumatising, it’s very easy to fall back.”
Daniel Monks, taking the title role in the British premiere, also carries his adolescent self with him. Despite becoming head boy of his Australian high school (not, he clarifies, by Richard’s “nefarious means”), he found growing up difficult. “I struggled with being a disabled teenager and a gay teenager and a gay, disabled teenager. Experiencing so much shame for anything that makes you perceived as different – I totally identify with a lot of the friction and pain in the play. Being a teenager just sucks.”
I sit in on a rehearsal at London’s Donmar Warehouse where the cast and director Michael Longhurst dig into the characters. It’s like a hilarious gossip session about everyone’s imaginary friends. Lew, at one end of the table, keeps his counsel – arms crossed, eyes down. Monks, in contrast, is disarmingly jolly as he reads – a wide, guileless smile above a bright red T-shirt. You realise how underrated Richard might dodge everyone’s defences.
After hearing Monks in a reading of the play (“I fortunately didn’t realise it was a low-key audition”), Lew has been more than willing to tailor the role. “Daniel was like, ‘You’ve written this character with cerebral palsy, and I can play that – but I have hemiplegia.’ I embraced that, because I’ll always see what actors are giving me and try to make it bespoke.”
The text includes a non-negotiable casting note – Richard and his friend Buck must be played by disabled actors. “Teenage Dick is meant to be a little bit of a poison pill, in that it seems so digestible,” Lew explains, “but in order to produce it successfully, you have to rethink how you go about your daily business.” Or, as Monks puts it, “you can’t get the disabled narrative for free. You need to employ disabled actors to get it.”
Of course Richard III, with his oft-exaggerated hunchback and murderous instinct, is hardly a poster boy for disability. “We’ve been talking about this a lot,” Monks says, “how, historically, disabled people were seen as marked by the devil. The reaction to that was that they’re objects of pity – saintly or vulnerable. You very rarely have a chance to play a complex human being. It’s a joy for an actor, exploring what it is to be a disabled person in a society that isn’t made for you.” With more than one disabled character in the play, Monks doesn’t need to represent what he calls “an ambassador for the community. I want to make messy, complicated, fucked-up art.”
As a prominent Chinese-American playwright, does Lew embrace an ambassadorial role? “No,” he says. Nonetheless, he is mindful of representation. “A lot of the conversations I had with my friend Gregg Mozgala, who commissioned the play [it premiered off-Broadway in 2018], came out of the parallels between our roles in our communities.” He hopes writers from perceived minorities will “overwhelm the market with a volume of different takes, so that no one piece has that burden, of containing the entirety of an experience”.
Lew and his wife, Rehana Mirza, are joint writers-in-residence at California’s La Jolla Playhouse, and are currently collaborating on something even more ambitious – a trilogy about British colonialism. “A lot of American theatre is very ahistorical,” he explains. Alongside this mighty project, he’s also tackling wrenchingly personal material: their baby daughter’s time in a neonatal intensive care unit after her premature birth earlier this year. Details of the experience are already receding, he says: “Your brain is protecting you.”
Monks was an acting-obsessed kid (“insufferable, attention-seeking, living for the applause,” he says cheerfully) before a botched operation at age 11 left him paralysed on his right side. Playing the lead in his debut film Pulse renewed his passion for performance. He is happy to parse his identity. “I feel like having a lived experience of two minorities helps me critique the two communities. For example, the gay male community is over-sexualised and the disabled community is desexualised, so living between those is really strange. I’ve experienced more ableism in the gay male community than anywhere, even the mainstream, whereas the disabled community is much more inclusive, because it really knows what it is like to be excluded.” Now based in London, he says he’s a “better, richer actor” because of the experiences he’s gone through: “Instead of acting for attention I’m acting because I have stories to tell.”
The BBC has pledged to include more disabled entertainers and actors on its mainstream panel shows, documentaries and dramas in an attempt to improve the representation of people with disabilities on screen.
The broadcaster is asking programme makers to provide “authentic and distinctive disabled representation on-screen” in programmes that are not specifically about disability such as Who Do You Think You Are?, Eat Well For Less?, and high-profile dramas such as His Dark Materials. There will also be a new disabled actor in Silent Witness.
Disabled people trying to break into the TV industry will also be offered the chance to apply for paid training contracts on more than a dozen of the BBC’s leading programmes as part of an initiative called BBC Elevate.
Disabled people struggling to gain experience in the competitive media industry will be offered the chance to apply for contracts offering paid placements on BBC shows including EastEnders, Line of Duty, The One Show, Countryfile, Pointless and Call the Midwife.
The BBC also announced a slate of programmes involving disability. Being Frank will feature the broadcaster’s security correspondent Frank Gardner, who will reflect on how his life changed when he was paralysed aged 42 after being shot by an al-Qaida gunman in Saudi Arabia.
Alex Brooker, the Last Leg host, will present a documentary called Disability and Me where he will “confront the true nature of his disability for the first time and attempt to unpack his disabled identity”.
BBC One has also commissioned a one-off 90-minute drama called But When We Dance about a couple with Parkinson’s, written by the Vicar of Dibley co-writer Paul Mayhew-Archer, who himself has the degenerative condition.
The announcements were made as part of International Day of People with Disabilities, as all of the UK’s major broadcasters come together at an event in Salford co-hosted by the BBC and ITV to share best practice on how to improve representation of disabled people on and off-screen.
The BBC has committed to increasing the number of disabled people in its workforce from 8% in 2016 to 12% in 2020. In an effort to improve conditions for disabled workers, disabled staff will be able to create a central record of their disability for BBC managers to access and understand their specific needs. This will enable disabled staff to move between jobs without having to go through the potentially awkward experience of explaining their needs all over again.
The data underlines the struggle facing many disabled workers, the Chartered Institute of Personnel and Development (CIPD) said.
“Too many disabled people continue to face prejudice and struggle to get into employment or to remain in work, and are less likely to progress to senior management roles or to work in professional occupations,” said the CIPD’s Dr Jill Miller.
“Businesses that aren’t inclusive – and don’t manage health and disability effectively – risk missing out on hard-working and talented individuals, and damaging their reputation among staff and customers.”
Angela Matthews, head of policy and research at Business Disability Forum, added: “Disabled workers are not ‘one group’. Some people with disabilities do not experience many barriers in work, and others experience many, multiple barriers.
“But we know that unjustified attitudes about what various groups of disabled people can and can’t do are still widespread, and affect many employment related issues, including equal pay, bonus pay, and pay increases,” Ms Matthews said.
The ONS report is the first analysis of disability pay gaps in the UK using newly reweighted earnings data from the Annual Population Survey.
To define disability, the ONS uses the Government Statistical Service (GSS) definition. This identifies “disabled” as a person who has a physical or mental health condition, or illness that has lasted or is expected to last 12 months or more, that reduces their ability to carry out day-to-day activities.
The ONS said disabled females were in general paid 10.1% less than non-disabled females in 2018 – narrower than the pay gap between disabled and non-disabled male employees who had a gap of 11.6%.
However, employment rates for disabled men and women were similar at 51.7% and 50.4%.
The ONS also found that those disabled employees with mental impairments had the biggest pay gap at 18.6%, while the gap was 9.7% for the physically impaired.
Much of the difference in pay can be put down to factors such as what employees do and how qualified they are, the agency said.
Using the GSS definition of disability, the ONS said 18.9% of people in the UK aged 16 to 64 years were disabled in 2018. Women were more likely to be disabled than men, at 21.1% and 16.6%, respectively.
But for lots of disabled children they can be a no-go – the fiddly doors require dexterity to open, sweets may not be allowed for medical reasons and the concept might not make any sense to them. But rather than miss out, some parents have found ingenious ways for them to join in
When I was a child, my parents hung an advent calendar at the foot of the stairs. It was a square-ish quilt my mother had made with a big Christmas tree at the top and 24 numbered pockets underneath.
Every night my parents placed an ornament and a small gift into a pocket and every morning I – or one of my sisters – would run downstairs to hang the ornament on the tree and examine the small present.
I now have my own family and my own advent quilt, also made by my mother, but I have struggled to continue this tradition.
My four-year-old daughter has a severe learning disability caused by a rare disease – she can’t crawl, talk or see very well. Katy can’t hang the ornaments on the tree or eat any sweets.
In fact, there aren’t many small gifts that she really enjoys. Last year I tried putting some Christmassy hair-slides in the calendar, but the only thing Katy hates more than getting dressed is people touching her hair, so it was no fun for her.
Since Katy doesn’t understand Christmas, gifts, or advent I began to ask myself who the calendar was for – her or me?
That’s when I went online and saw that special needs families around the world had found many ways to include their children in advent.
Festive physio
Australian blogger Julie Jones is mother to Braeden, now 24, who has cerebral palsy.
“As he was growing up I was just really frustrated because there were so many things around Christmas that were traditional, and which he couldn’t participate in,” says Julie.
“The traditional advent calendars have little poky boxes and you have to be able to open them, and they require fine motor skills that he just didn’t have.”
Julie’s solution was to hang up a set of sparkly gift boxes, engineered to be opened with a drawstring. Inside were knick-knacks like bouncy balls and toy cars.
It still wasn’t easy for Braeden to get at these goodies – but it was doable, and he had a great incentive to try. Julie says that over the years Braeden’s fine motor skills improved because of the daily round of festive physio.
Melanie Mills’s advent calendar is like mine – it’s made of fabric with rows of pockets. But instead of ornaments she gives her nine-year-old son Marshall little fabric cut-outs with Velcro on the back.
Marshall, who has learning difficulties and other medical issues, can stick these on the calendar to create a picture – in theory.
“At the beginning Marshall would always try to put them all on top of each other, so you’d have this nice big snow scene with 24 little things all stuck in the same place,” recalls Melanie, laughing. “Whereas a neurotypical child would have put the sleigh with reindeer and that kind of thing.”
Marshall has gradually learned to spread the ornaments out in a more conventional way. More importantly, in the last couple of years he’s understood that the reappearance of the calendar means Christmas is on its way.
This year, as well as the craft activity, Marshall will get cold hard cash. Every day he will get £1 to drop into a Christmas-tree-shaped coin run that empties into a bucket. Marshall loves shopping, so after Christmas he’ll hit the sales to spend his £24.
In aiming for simple inclusion, the special needs community is compelled to be creative. We often end up giving our children meaningful experiences that able-bodied kids don’t get to enjoy.
Glancing at my online network, I see one mum has found an advent cabinet and gets her son, Alfie, to “eye-point” to the right day whereupon she reads him a joke. Another mother sets her child riddles and a treasure hunt.
Sally Collett says she would love to be able to buy an advent calendar in a shop that could be enjoyed by her 13-year-old son Adam, who has multiple disabilities. Last year was the first time she felt she had the time and energy to create something herself.
She sought out 24 scented candles, and loosely wrapped them in crinkly paper that she knew Adam would enjoy playing with. In the evening, while he was taking his medication, he picked out a candle, which the family lit to enjoy together.
“I always think this time of year is more poignant than others, to think about how lucky you are,” she says. “To me the meaning of Christmas is family, and you’ve got another year with your child – that’s so important.”
Alongside ingenuity there is realism. For some autistic children, the countdown to Christmas isn’t fun but frightening. Others become too obsessed with their calendars, or can’t stop themselves from gobbling all the chocolates at once. Parents of these kids lock the calendars away or dispense with the tradition altogether.
“The challenge we’ve had in the past is that 24 days is long enough to establish a new routine, and then on day 25 it changes again,” says Rachel Wilson, mother of two children with autism. “I don’t think we could introduce something new into the routine at all, so I think it would be more about adapting part of the day.”
Rachel and her husband, Andrew, wrote The Life You Never Expected, a memoir about caring for disabled children, written from a Christian perspective. While the couple’s son Zeke has developed enough to read a book of bible stories, their nine-year-old daughter Anna has a reasoning and conceptual ability that Rachel describes as “pre-toddler”.
For Anna, Rachel is thinking about changing bath-time during advent to give it a special feel, with some candles and music and maybe some plastic nativity figurines to play with.
When I confess to Rachel my worry that maybe I’m just doing advent for my own benefit she tells me: “Even if you are doing it for yourself, it’s still legitimate and it’s still important to have those traditions in place.”
She says: “I have similar worries, particularly on Anna’s birthday, when I think ‘Who is this for?’ But actually, I need to mark it. A lot of taking care of special needs children is trying to manage those moments for yourself.”
Last week, my wife and I found a calendar that might just fulfil this need in me and still be enjoyable – perhaps, one day, meaningful – to Katy.
She loves music and nursery rhymes, and online we found a little plastic gramophone that comes with 24 “records”. We can tuck these into the pockets of mum’s calendar and we’ll help Katy retrieve them each morning to play.
If it’s a hit we’ll be getting it out for many Christmases to come. If it’s not… well… we can always light some smelly candles.
A look at the relationships involving para-athletes. Partners, coaches, team mates and even guide dogs… And who better to do it with than visually-impaired cyclist and married couple Lori & Neil Fachie.
A year ago Nina Thair was living in her own home and working as a teacher at a secondary school in Brighton.
She had overcome many challenges after being diagnosed with multiple sclerosis in her late 20s – 17 years ago.
But she was still able to live independently with the help of walking aids.
After a deterioration in her condition, all that changed.
A lack of support in the community meant she had to be admitted to hospital.
And from there, she was transferred to a care home for the elderly as she needed a wheelchair and could no longer cope with the stairs at her home.
“The care was fantastic – the system is full of people doing their absolute best in very challenging circumstances,” Ms Thair says.
“But I should not have been there. I am a 46-year-old woman and I was in a bed that was meant for a dementia patient.
“There are just not the services available for working-age adults like me.”
‘My money is not my own’
In the end, Ms Thair spent 10 months in the care home before being able to move into a specially adapted flat.
While in the home, she had to sell her flat for much less than it was worth and she has now started paying the cost of her care.
“I have always worked full time despite my MS, saving and paying in to a mortgage,” Ms Thair says. “But I’ve had to take early retirement now. I always had a dream of going travelling and writing and blogging about my experience.
“But I’ve now realised that is not possible – all my money has to go on my care. Because of my disability, my money is not my own. It is massively unfair.
“I’ve probably gone through half of it [my money] in the past six weeks and in another six to eight weeks the rest will be gone.
“I am not saying I should not contribute – but everything I planned to do is gone. It breaks my heart.
“You see the same with elderly people who have saved all their lives and want to give their family an inheritance. People should be entitled to care if they need it. Politicians just do not understand it.”
When Ms Thair’s money does run out, she will be once again reliant on what local services can be provided. Currently, she has help from two carers but fears this may not continue in the long term.
“Soon I will not have any money,” she says. “I will be back at the sharp end of it fighting to get the care I need.”
Widespread concern
It is a fight that is becoming increasingly difficult. There are more than one million adults reliant on social care provided by councils.
A survey of nearly all directors of social care across England indicates 94% have little or no confidence they will be able to meet their statutory responsibilities next year, with 90% saying they have concerns they have insufficient capacity to cope this winter.
Association of Directors of Adult Social Services (ADASS) president Julie Ogley said it was clear the situation was “getting worse”.
And the problems accessing care were causing people to end up in hospital, go without care or rely on friends and family.
“Good care and support transforms lives,” she added.
Election campaign
ADASS said the system was “desperately short of funding” but has also called for wider changes.
During the election campaign, all three main parties in England – social care is devolved – have promised to act.
The Tories and Lib Dems want to see a cross-party approach adopted to come up with new proposals.
And the Tories have made an explicit commitment no-one should have to sell their own home to pay for care.
Labour, meanwhile, has called for free personal care to be introduced for those who need help washing or dressing.
It has said this would be targeted at older people first, before being rolled out to working-age adults.
Louise has paranoid schizophrenia. When she was admitted to a mental health unit, she didn’t think she would be allowed to vote. But the hospital helped her cast her ballot in the last election.
The vast majority of mental health service users have the right to vote.
If they are voluntary patients, they can leave the hospital to attend the polling station, but if they have been detained in hospital, they must apply for a Section 17 notice to go to the booth, or vote by post.
Patients convicted of committing a criminal offence cannot vote.
Debbie was born a girl and lived most of her life this way.
But almost two decades ago, aged 44, she sought help to transition from a woman to a man.
Debbie underwent a full female-to-male surgical transition, which included having a phalloplasty – where a penis was constructed from skin on her forearm.
She changed her name to Lee and spent 17 years on testosterone – masculinising hormones that can lead to changes such as more facial hair and more muscle developing.
She believed transitioning would allow her to “become accepted in the world”. But now, aged 61, she’s detransitioning back to the gender she was assigned at birth.
The number of people openly questioning their gender identity has increased rapidly, with demand for NHS specialist gender-identity services in England – for both children and adults – at an all-time high.
Many who transition to a gender different from the one they were assigned at birth will live happy lives. But BBC News has heard from others who, like Debbie, have reversed the process.
“I was what would be considered a pretty gender-nonconforming child,” said Thain, now 40.
“And then there was the fact I was attracted to girls… and I just didn’t know anybody who was lesbian.”
Once in her teens, Thain said the growing discomfort she had felt around her identity had convinced her she was transgender.
At 26, Thain sought help from the NHS and was prescribed testosterone. But after two years, she decided to stop taking the hormones and detransition.
“It wasn’t until I discovered a community who were affirming to gender nonconforming people, which is the radical feminist community, that I really made the decision to stop,” Thain told BBC News.
Charlie Evans, 28, also struggled with her gender identity from a young age. At 15, she started to identify as a boy, shaving her head, binding her breasts and using male pronouns.
She never took testosterone and after several years, went back to identifying as a woman.
She has since set up a support network for detransitioners and said she had been contacted by about 300 people, including some who had surgically transitioned. She admitted she could not verify all their stories.
“Most of us are same-sex attracted,” she told BBC News. “Most of us identify as either lesbian or bisexual and a lot of us are autistic.”
Charlie said many of these women felt at the time they had sought treatment, “they were not in a state that they were able to give consent [to medically transition] because they felt so unwell with eating disorders or depression”.
Lui Asquith, from Mermaids, which supports transgender and gender-diverse young people, warned such experiences should not be used to imply the system was lacking rigour or people were being dealt with in a way that “suggests they’re being pressured or made into being trans”.
“That’s incorrect,” they said. “You can’t make someone be trans.”
There is no official data for the number of people who detransition. Some studies have suggested 2%, while others suggest lower. But experts have told BBC News the studies are flawed.
Psychotherapist James Caspian has worked with transgender adults for more than a decade. More recently, he’s been contacted by dozens of detransitioners.
“This whole area of transgender medicine is very under researched,” he said. But he has spotted certain common themes among the detransitioners he has spoken to.
“Quite a lot of them seem to have had a very negative experience of being female in a female body – sexual harassment, even abuse,” he said.
Debbie believes she transitioned as a way of dealing with the sexual abuse she endured as a child.
“I thought I was going to be on a journey to becoming a different person… I’d morph into someone else and leave that traumatised woman completely behind,” she said.
But through counselling, she added, it had become apparent “the transition was a way of trying to escape”.
Detransitioning is a controversial topic. Christopher Inglefield, who specialises in transgender surgery, explained why parts of the trans community might be “very nervous” about detransitioning becoming a prominent story.
“Any reversal of that transition starts to make society question the whole transition process in the first place,” he said.
And this could lead to people questioning the funding and support for much needed gender services.
“What’s really important is to ensure that this experience [of detransitioning] isn’t used to pressure other people,” said Lui Asquith, from Mermaids.
“It shouldn’t be used to tell those who are trans, those that are gender diverse, that they are wrong or different. It’s about creating a system that makes everybody feel validated.”
The Gender Identity Development Service (Gids) is the only NHS clinic in England that treats under-18s questioning their gender identity.
Children can be offered puberty-blocker drugs, which work on the brain to stop the eventual release of oestrogen or testosterone
Meanwhile, adults can begin transitioning through taking cross-sex hormones.
NHS England said adult patients were required to live for at least a year in their desired gender before they became eligible for surgery.
The Tavistock and Portman NHS Foundation Trust, which runs Gids, said its evidence suggested detransition was “very rare” and it was important not to equate all detransitions with regret.
The trust – which also runs the adult Gender Identity Clinic (GIC) – said those pursuing physical interventions to transition and adults wishing to detransition were offered “psycho-social support” throughout.
But two former Gids clinicians are publicly raising concerns about the support available to this vulnerable group, for the first time.
Anna Hutchinson, part of Gids’ senior team from 2013-17, said when patients sought help from professionals, they had expectations about the outcome they wanted.
“Many of them are very clear that they want the medical intervention,” she said.
“The people for whom that pathway hasn’t worked, in retrospect, will say that what they wished they had was therapy.
“So we’ve got a bit of a dilemma where perhaps what some of this patient group need may not be what they want at this time.”
Detransitioners were a “particularly isolated group of people”, she said.
“They’re having to self-organise to find help and seek treatment.”
Psychotherapist Anastassis Spiliadis, who left Gids last month after four years, said he was worried there was not always a proper assessment of an individual’s background.
A Gids assessment “usually comprises of three to six appointments”, according to its website.
“I know clinicians who are really thoughtful and really cautious in their approach,” Mr Spiliadis said. “But I worry how much actually could be explored by clinicians who believe in a three-session assessment model.”
Gids said its clinicians “work thoughtfully on an individual, case-by-case basis”.
Mr Spiliadis, who also works privately, said social isolation, depression and anxiety were common among the detransitioners he was treating – some of whom had been seen at Gids – and some had been diagnosed with autism spectrum disorder.
“They used to make sense of all these difficulties through the gendered kind of lens,” he said.
The Tavistock and Portman Trust said it expected private clinicians “to liaise with relevant NHS services who may have supported them in the past” to best help each young person.
“All patients with gender dysphoria have extensive access to regular psychotherapy and counselling support,” an NHS England official said.
You can watch Newsnight on BBC Two at 22:30 on weekdays. Catch up on iPlayer, subscribe to the programme on YouTube and follow it on Twitter.
Listen to Going back: The people reversing their gender transition, on File on 4, BBC Radio 4 at 20:00 on Tuesday. Listen again here.
Figures released under the Freedom of Information Act show that only 40% of universal credit (UC) claimants get the full amount they are entitled to.
The data shows that the other 60% of claimants are having their UC cut to pay off debts and loans, including advance payments.
This means that over a million of the current 1,759,000 UC claimants are having to survive on less than their already low UC entitlement.
The reality is probably even worse as the figures do not include claimants who are receiving less than their full amount because they have been sanctioned.
The average amount that UC claimants owe to the DWP is £903.
To watch Tilly Moses perform her folk music on stage, there are no visual clues she’s disabled – although the message is there loud and clear in some of her lyrics.
A year ago, Moses was diagnosed with fibromyalgia, a chronic condition that causes pain and fatigue. It often comes after a big shock to the immune system: Moses, who grew up in Stanton, Suffolk, had meningitis when she was 11.
She says her fibromyalgia can leave her so tired she passes out. It also affects her cognitive function and she can be in a lot of pain, and she sometimes has to use a walking stick or a wheelchair.
“When people see me, because I’m young and I’m performing, people assume you can’t be those things and be disabled.”
The misconception annoyed her and so she started writing songs about it.
Moses, 21, says it wasn’t until she started to class herself as disabled that she felt “liberated”, although she’s been shocked by the responses of some people.
“Disabled people aren’t represented in the media fairly; there’s a lot more to being disabled than what people think,” she says. “It’s a societal issue; there’s this attitude that a disability is something to overcome.”
On one occasion when she had her walking stick, she sat on one of the disabled seats on a bus. A woman was talking loudly about her, saying she must have been faking it because her makeup was done so nicely, she says.
“It’s as if we’re not full people and that we live such tragic lives that we wouldn’t think about makeup and dressing nicely. I couldn’t believe what I was hearing; I was gobsmacked.”
Another time, she was at an airport and her boyfriend was pushing her in a wheelchair. He was messing around and pushed her quickly down a ramp, causing her to laugh because it was funny, she says.
“A man looked at me and was so perplexed. There’s a perception that my life must be tragic and why would I be laughing. My life is fine, I wouldn’t change anything.
“I’m happy but people find that really perplexing, as if being disabled is almost worse than being dead. I’ve got friends, family, a boyfriend, a career, my music. Sometimes I can’t get out of bed but that’s fine.”
The University of York politics graduate, who released her first album in 2017, says she built up an audience base and enjoyed some “minor success” before her diagnosis. She hopes to use her platform to continue to talk positively about disability, and share people’s stories and ideas that “don’t get aired in a musical capacity”.
“I’m making a small difference where I can and I’m really honoured to be in that position,” she says.
Disabled academic Gill Loomes, who has multiple conditions including fibromyalgia, says what Moses is doing is “really quite important”.
“One of the things that amazes me is how she manages to get some quite complex political social theory into song lyrics and makes them lyrical and accessible without losing the context. A “stand-out” song for her is The Social Model.
“I am not broken nor a problem to solve, I am not a learning tool to make you more evolved,
“I’m a passion and a person, I have ambition, love and drive,
“I could be free of all the shackles you draw on me in your mind if you’d let me be.”
“To have someone in Tilly’s position, who not only has a grasp of the condition with all its nuances and complexities but also can put it in a way that grabs people’s attention, is a really achievement,” says the 36-year-old, from Halifax. “It’s almost an agenda for disability rights politics; it’s great to have somebody actually putting these issues on the public agenda.”
For Moses, who says she’s “really proud” to have written songs that resonate, her music doesn’t just give her a voice – it also helps to muffle the negativity faced by disabled people.
“I find it empowering to stand up on stage, singing about my life and what it’s like to be disabled without fear of anyone interrupting me and telling me I’m wrong.”
The government has removed the EU emblem and its 12 gold stars from British disabled drivers’ parking badges even though the UK has not left the bloc, it has emerged.
It has caused concern among disabled drivers who fear their blue badges will no longer be accepted in the EU because of the absence of the stars, which demonstrate the car driver has EU rights. The Department for Transport has refused to say when it removed the stars, who took the decision or why it was deemed appropriate.
The DfT has claimed it is barred from disclosing such details because it would breach purdah rules that bar civil servants from releasing any information that could influence the general election.
Blue badge holders say they are worried it means the badge will no longer be valid for holidays in Europe.
Linda Joanes, from Northumberland, said: “Very surprised to find my new blue badge has no EU symbol. I have used my badge in France – large supermarket car parks etc – and last year it was also very useful, for example in giving priority boarding on the international ferry across Carlingford Lough between Northern Ireland and the Irish Republic. Was not expecting this change and no information or warning given.”
The old blue badge was emblazoned with the letters “UK” encircled by 12 gold stars on a blue background, the symbol of the EU. This has been issued to approximately 2.5 million people in the UK to limit the amount of walking between their vehicle and their destination.
The new badge retains the blue background but is stripped of stars and the words “European communities model”.
One retired person who is applying for a disabled parking badge said he was concerned decisions like this were being taken behind closed doors before the UK has left the EU, is still a full member of the EU, and there is still a chance it will remain in the bloc depending on the result of the election.
“Has the blue badge scheme quit the EU before the rest of the UK?” he says, asking “on whose authority” the redesign was undertaken. “What if the government changes and we remain/revoke article 50? Another big redesign? Seems to me that some of the most vulnerable in Britain should be made aware.”
A spokesman for the DfT said they could not answer questions on the matter but confirmed the redesign. “The new blue badge design was rolled out earlier this year. These badges are still valid in the EU,” he said.
Asked if the badges were valid in the EU in a deal situation, or a no-deal situation, the DfT declined to answer, citing purdah rules.
Earlier this year, Sajid Javid, the then home secretary, was forced to defend the redesigned British passport, saying it was “sensible and efficient” to remove the words “European Union” from the cover.
The move angered those applying for new passports who were hoping to hold on to an emblem of EU membership.
Sinead Burke is all about fashion and equality and in September appeared on the front cover of British Vogue.
At three-and-a-half feet tall, she describes herself as a “little person”.
But what if the most fashionable choice of clothes you have are in the children’s department and have “Daddy’s Little Princess” printed on them?
In this month’s Ouch podcast, Sinead explains how she uses people’s interest in fashion to shine a light on inclusive design in fashion, public spaces and equality.
It’s also led to other opportunities such as attending the prestigious Met Gala and the launch of her own podcast series with guests including Victoria Beckham.
One of the programme’s hosts, Simon Minty, is also a little person and delves into areas most interviewers wouldn’t dare go into which brings about plenty of wicked humour.
Project Understood aims to improve voice recognition software for users with Down’s syndrome.
The programme is a partnership between the US technology company Google and the Canadian Down Syndrome Society. But anyone with Down’s syndrome can take part in Project Understood.
So @AtaxiaUK are running a campaign called disordered not drunk, where disabled people recount their stories of mistakenly being labelled drunk. Tonight I seem to have a new one. I went for a meal with my girlfriend, and as I was walking back to my car, someone apparently 1/2
Because disability can affect balance and motor skills. It’s hard to tell sometimes. But maybe the easiest thing to do is ask. The police were fantastic- really understanding, and they let me go on my way very quickly, but it could have easily been avoided with a simple question
Helen Mountfield QC, representing Mr Azamati, had said there were ongoing talks with the union over what steps it could take to address the “failings” exposed by the case.
Image copyrightPAImage caption The Oxford Union intentionally resembles the House of Commons
In a letter to the standing committee, posted on Oxford Union’s Facebook page, Mr McGrath said: “For all my shortcomings, and all of my mistakes, I apologise profusely and unqualifiedly.”
He said managing the response to Mr Azamati’s eviction from the debate had been “the most difficult thing I’ve ever been charged with”.
He added he had been asked by those present to bring the disciplinary complaint against him on behalf of a staff member but added he “should have recognised a wider obligation”.
“The right response would not have begun with prosecution and apportioning blame; it would have addressed immediately the extreme distress of all involved,” he continued.
Before signing his resignation, he added he had proposed “a full, public and independent review” of the union’s policies in relation to disability, how it trains its staff and whether the current security system “is fit for the purpose of a student society”.
The Oxford Union, which is independent from the university, has a tradition of hosting debates and speakers stretching back to 1823.
The university previously tweeted its support for Mr Azamati, and said it shared “the widespread outrage regarding the unacceptable treatment” of the student.
Stephanie uploaded her first video on Sunday (November 17) and titled it “I Have High Functioning Autism. This is me”, where she also spoke candidly about her struggles with social anxiety.
Reflecting on her diagnosis, Stephanie said: “I’ve guessed I just went under the radar with this, but it explains a lot to me. I think since knowing I’m more aware of what I’m doing, but I’ve struggled my whole life with it, it’s actually quite sad.
“My mum felt a bit gutted for me because she was like, ‘I knew that you struggled with these things, but I didn’t even think…’ I think she felt upset at the way my little head must’ve been struggling for many years.”
Revealing that she decided to start the blog as a way of helping others and spreading awareness, the actress is also hoping to receive “help and tips”.
In the video, Stephanie discusses how she’s always picked up on people’s traits and attempted to copy them, while also talking about why she struggled to get on the school bus as a child.
Writing on Twitter, Stephanie added: “I’m at the moment trying to get to know my self for the first time ever. It’s like the jigsaw pieces have finally fitted together…
“People say to me why share everything, but I feel like, what’s the point in going through everything I have if I can’t share it when I KNOW it will help others?
“I’ve already helped so many with my experiences in life and I feel like that’s my calling.”
A woman who was not informed that her father had a fatal, inherited brain disorder has told the High Court that she would have had an abortion if she’d known at the time of her pregnancy.
She is suing three NHS trusts saying they owed a duty of care to tell her about her dad’s Huntington’s disease.
Any child of someone with the condition has a 5on’s 0% chance of inheriting it.
Doctors suspected the diagnosis after her father shot dead her mother and was detained under the Mental Health Act.
The father tested positive for Huntington’s Disease, which is caused by a faulty gene and leads to the progressive loss of brain cells, affecting movement, mood and thinking skills. It can also cause aggressive behaviour.
He told doctors he did not want his daughter told about his diagnosis, fearing she might kill herself or have an abortion if she found out.
50:50 chance
The claimant is known as ABC in order to protect the identity of her own daughter, who is now nine.
ABC only found out about that her father had Huntington’s Disease, a progressive, incurable condition, four months after giving birth.
At the High Court she said she’d been told about her father’s condition by accident.
“I was utterly traumatised by the way I was told”, she said. “I had no family support and was left to Google the condition.”
ABC eventually had a test and found that she also carries the faulty gene. Her daughter, who’s not been tested, has a 50:50 chance of inheriting it from her.
The symptoms of Huntington’s Disease usually appear between the ages of 30 and 50.
ABC, who’s now in her 40s, told the court: “I’m now the prime age to get unwell. The future is absolutely terrifying.”
She told the High Court that had she known during her pregnancy that she has the gene for Huntington’s she would definitely have had an abortion.
She is suing St George’s and two other NHS Trusts involved in the family’s care, for £345,000 in damages.
In written submissions Philip Havers QC on behalf of the trusts, said the question for the court was whether there was “a duty to disclose to her confidential information about her father against his express wishes” which he said was “plainly not the case”.
The court heard that after ABC had found out about her father’s disorder, her sister also became pregnant.
Philip Havers QC for the trusts said ABC had asked doctors not to tell her sister that their father had tested positive for Huntington’s.
Mr Havers said it was “a bit rich” for ABC to be bringing this claim for damages.
He said she could have told her sister in time for her to have a termination, but that was what she was complaining about for herself.
ABC said at the time, she’d been “utterly terrified” about the impact on her sister adding that the situation should have been managed by health professionals.
Huntington’s disease
About 8,500 people in the UK have Huntington’s disease and a further 25,000 will develop it when they are older
It is a rare inherited disorder that damages certain nerve cells in the brain
Huntington’s generally affects people in their prime – in their 30s and 40s – and patients die about 10 to 20 years after symptoms start
Some patients describe it as having Parkinson’s, Alzheimer’s and motor neurone disease rolled into one
This case was first argued at the High Court in 2015 when a judge ruled that a full hearing should not go ahead.
The judgement said there was “no reasonably arguable duty of care” owed to ABC.
But in 2017, the Court of Appeal reversed that decision and said the case should go to trial.
She is now suing St George’s Healthcare NHS Trust in south-west London and St George’s Mental Health NHS Trust and Sussex Partnership NHS Foundation Trust for damages.
If ABC wins the case, it would trigger a major shift in the rules governing patient confidentiality, and raise questions over the potential duty of care owed to family members following genetic testing.
A spokesperson for St George’s Healthcare NHS Trust said: “This case raises complex and sensitive issues in respect of the competing interests between the duty of care and the duty of confidentiality.
“It will be for the court to adjudicate on those issues during the trial.”
Ebenezer Azamati was “accosted” by a security guard when he tried to return to a seat he had earlier reserved before the debate on 17 October.
He said he was “very pleased” that claims of “false violent disorder” were retracted by the Oxford Union.
The union has been asked for comment.
The postgraduate student from Ghana said his treatment made him feel “unwelcome in the union, Oxford and even the country”.
The Oxford Union, which is independent from the university, has a tradition of hosting debates and speakers stretching back to 1823.
Mr Azamati, who is visually impaired, was “forcibly and violently prevented from re-entering the union to resume his seat” before a debate, according to the university’s Africa Society.
It said he arrived to the union in Frewin Court early to reserve his seat in the chamber before the debate and then returned to his college.
The student was then confronted by a security guard when he tried to return to his seat so Mr Azamati sat in another seat offered by another member before staff attempted to remove him.
The society said: “Even if he had re-entered when the debate had started, such poor treatment through violent means remains unjustifiable.”
Nwamaka Ogbonna, president of the Oxford University Africa Society, said a security guard had told Mr Azamati he could not enter the chamber because “the union was full” despite the student having apparently reserved a seat.
Ms Ogbonna said: “The argument that he had to leave because there were not any seats is invalid. People are allowed to stand.
“I think everyone is quite perplexed.”
‘Not human enough’
Video footage shared online showed an argument between security and Mr Azamati in the chamber before staff appeared to manhandle him.
Mr Azamati was attending the debate in which the motion “This house has no confidence in Her Majesty’s Government” was discussed by members and politicians from various parties.
The St John’s College student, who studies International Relations, said he was “treated as not being human enough to deserve justice and fair treatment”.
Helen Mountfield QC, who represents Mr Azamati, said there were ongoing talks with the union over what steps it can take to address the “failings” exposed by the case.
The university tweeted its support for Mr Azamati, and said it shared “the widespread outrage regarding the unacceptable treatment” of the student.
It added: “The union is an entirely independent club not governed by the university, but this student’s treatment goes against our culture of inclusivity and tolerance.
“We are pressing the union for answers on how they plan to remedy the issue and ensure this does not happen in future.”
Cerebral Palsy (CP) is a devastating diagnosis that not only changes the life of the sufferer but their entire family. Children with Cerebral Palsy have very specific and wide ranging care needs and, although far from perfect, the NHS provides families with much need assistance in providing care.
Cerebral Palsy does not disappear in adulthood. The care needs for sufferers remain just as complex and extensive. However, the assistance from the NHS often appears to vanish. The National Institute for Health and Care Excellence (NICE) has recently reviewed the health services available for adults with CP and have found that services that are available for children are often not open to adults in many parts of the country. Suddenly families are left with a void to fill once those vital services are no longer available. The lack of services then impacts on quality of life of for these individuals and puts additional strain on families who have to deal with the day to day consequences.
NICE are responsible for improving outcomes for people using the NHS and other public health and social care services. They try to achieve this goal mainly by developing the guidance and quality standards for care that are used in England but also by ensuring services are equally available across the NHS. In theory this should mean that all services are equally available across the country with the same standard of care throughout. However, NICE have noted that whilst children have access to specialist services designed for their condition and clear care pathways are in place adults do not always have the same experience.
Many care professionals in this area will no doubt have experience of the drop off in services available to adults with cerebral palsy despite knowing all too well that the care needs for such individuals remains just as complex throughout their lives.
NICE’s recent report emphasises that “many adults with cerebral palsy need ongoing specialist management” and “that this is particularly important for people experiencing change or deterioration in function and when surgical procedures are planned.” Anyone who has been involved with adults with cerebral palsy will appreciate that the care required is very individual and is ever changing. NICE’s proposal is that once a patient reaches adulthood they are referred to a multi-disciplinary team (MDT) made up of different specialisms experienced in the management of neurological impairments. The MDT would then be the central point for ensuring a holistic and complete assessment of care needs is carried out on a regular basis and more importantly that the care provided and services involved are working together in a co-ordinated way.
This will no doubt be music to the ears of many health professionals who would welcome a collaborative approach to providing care to such complex individuals. I have seen first-hand the huge benefit for my Clients in having a case manager involved in complex cases co-ordinating care and treatment and ensuring that the various health professionals work in a collaborative way to maximise the positive effect of their efforts. One could only hope that the MDT approach being suggested by NICE would create the same effect.
I have also had the pleasure of working with Client’s with CP and their families, experiencing first-hand the level of specialist care and therapy that is required to properly support suffers. Experts in areas such as care, speech and language therapy, accommodation, occupational therapy, assistive technology and physiotherapy are required almost universally to properly assess the care needs of a Cerebral Palsy sufferer. When dealing with the future care needs of Clients with Cerebral Palsy we have the benefit of claiming the costs of any care or treatment on a private basis to ensure that where NHS services are not available our Clients can source what is required privately. This experience brings to light the financial costs in providing suitable care to both children and adults with Cerebral Palsy and in the current environment of austerity and cuts to health budgets in the name of finding efficiencies leaves individuals relying upon social services extremely vulnerable to losing that support which helps provide them with a decent quality of life.
I have sadly also seen the immense impact that caring for a child with CP into adulthood has upon the families providing that continuous care. When we are working with Clients and their families we can ensure that provisions are put in place to maintain a continuous level of care especially when the parents of sufferers advance in years themselves and cannot provide the level of care that they used to. Again one can only hope that the MDT approach being suggested would also take in account the circumstances of individuals and their families providing a more holistic view of the needs of everyone involved.
Looking into the future I hope that NICE implement the suggestions detailed in their review as soon as possible. It is disappointing to hear that patients suffering with such a life changing condition fall out of the system when they reach adulthood whilst their care needs remain just as challenging and ever changing. In the meantime parents and families of adults with CP may wish to push for regular reassessment to ensure that services such as physiotherapy, speech and language therapy and occupational therapy are engaged if required to ensure sufferers maintain their highest quality of life. Health professionals may also benefit from the co-ordinated approach seeing more benefit for patients arising from the great effort they put into their care.
James Anderson, Solicitor in the Clinical Negligence team at Lime Solicitors
One in two people who appealed in court against a decision to deny them disability benefits was successful, analysis of five years of data shows.
In total, more than 550,000 people won an appeal over their benefits at tribunal between 2013 and 2018.
Ann Barker, who has bipolar disorder, said she was tempted to give up, but had twice fought a decision at tribunal and won.
The government said only around 5% of disability decisions were overturned.
Benefits assessments are carried out on behalf of the Department for Work and Pensions (DWP) by the private contractors Capita, the Independent Assessment Services (formerly called Atos) and Maximus.
The success rates showed benefits assessments were beset by “poor decision-making” and “obvious inaccuracies”, charities said.
In 2018, the Commons Work and Pensions Committee said failings in disability benefits assessments had led to a “pervasive lack of trust” in the system. It said ministers should consider taking the process back in-house.
Daphne Hall, the vice chair of the National Association of Welfare Rights Advisers, said: “The reason for the high success rates [at tribunals] is because of the poor assessments carried out by health professionals.
“The DWP tend to base their decision purely on these assessments and disregard other evidence sent in by the claimant.
“However, tribunals will weigh up all the available evidence and talk to the claimant further, which enables them to make much more reasoned and balanced decisions.”
The BBC’s Shared Data Unit analysed figures from Freedom of Information responses from HM Courts and Tribunals Service and Northern Ireland’s Department for Communities (DfC).
Most of the appeals concerned Employment Support Allowance (ESA), which is paid to people unable to work because of illness or disability; the Disability Living Allowance (DLA), which is paid to people with extra care or mobility needs; and Personal Independence Payment (PIP), which was introduced to replace DLA
It found:
About 553,000 successful appeals were heard at tribunal about disability, sickness and incapacity benefits out of 981,000 from 2013 to 2018
Last year, around two thirds of cases heard in Great Britain found in favour of the claimant. In Northern Ireland, the figure was around 54% in 2018-19
What is the appeal process?
Since 2013, people seeking to overturn a benefits ruling must complete a written challenge within a month, known as a mandatory reconsideration. If unsuccessful, people can appeal against the decision at tribunal.
The DWP said mandatory reconsiderations were introduced to ensure claimants received the right decision without having to go to court.
Critics say the process is confusing, stressful and does not give claimants enough time to gather evidence to support their appeal.
‘I was down to my last tin of food’
Stephen Naish, 60, from Poole in Dorset, was a sheet metal worker for 16 years but was forced to quit work following a motorcycle accident that left him paralysed in his right arm.
He now has curvature of the spine, a frozen shoulder, carpal tunnel syndrome, and damaged tendons in his left arm.
Last year, his Employment Support Allowance was removed following a health assessment.
“My income was something like £30 to £40 a month less than my outgoings, without my travel and food,” Mr Naish said. “I was literally down to my last tin of potatoes.
“I had to go to a food bank and I was very lucky as I borrowed money from my wonderful mother and a good friend. It was stressful.”
The government declined to overturn the decision following his written appeal, but he won at tribunal in May.
Judges heard he was unable to pick up a £1 coin with either hand.
‘I kept wanting to give up’
Ann Barker, from Norwich, who has bipolar disorder, psoriasis, arthritis and lower back pain, has twice taken the government to tribunal and won.
In 2013, she appealed against a decision to refuse her the mobility and care components of Disability Living Allowance.
Then she challenged a second time when she was refused an application for a Personal Independence Payment.
Ms Barker said: “I kept wanting to give up, saying to myself I don’t want the money, I will manage.
“They were asking me if I could find a place of work and I was saying on a bad day [when she is depressed], I can’t leave my bedroom.
“They have a protocol but it’s all geared towards physical health disabilities. The last tribunal obviously heard me, they knew I had hidden disabilities.”
Emma Carrington, advice and information manager at Rethink Mental Illness, said: “We’ve heard from countless people living with mental illness that challenging welfare decisions is long and extremely bureaucratic.
“This process can be stressful and often demeaning, and many people don’t have the energy to challenge the decision.
“Many assessors don’t understand the fluctuating nature of mental illness.”
The DWP said the health assessments were carried out by professionals with the “right clinical experience”.
Drop in appeals
The rise in the percentage of successful appeals came despite a drop in the overall number of cases being heard at court.
Charities said the introduction of mandatory reconsiderations and cuts to legal aid had deterred people from appealing.
“If someone is already struggling to navigate the labyrinthine benefits system, then they are probably going to struggle to navigate the courts system without help,” said Polly Neate, chief executive at anti-homelessness charity Shelter.
Kamran Mallick, the chief executive of the Disability Rights UK charity, said he had not been able to walk since the age of three but was asked to try and stand up at his own PIP assessment.
He said: “I was asked if I could try standing up. That’s just crazy, because I can’t. And yet despite that, I was asked to try harder.
“It’s kind of dehumanising, degrading. It feels like you are being told that you are not telling the truth. “
The Ministry of Justice said it was “pure speculation” to suggest a decline in the number of benefit appeals was down to legal aid changes.
A spokesman said it would pilot a scheme next year offering early legal advice to people with social welfare problems.
Drop in all benefits appeals to First-tier tribunal
The DWP said it had been improving the assessment process.
It said of 3.3 million PIP decisions taken from 2013 to 2019, only 5% were overturned at appeal, while of 4.4 million ESA decisions made between 2014 and 2019, only 4% were overturned at appeal.
A spokesman said: “We are committed to ensuring people get the support they are entitled to and spend £55bn a year supporting disabled people and those with health conditions.”
The Department for Communities in Northern Ireland said about 10% of all of the PIP decisions it handled were appealed, with about 2.5% of the overall number of cases successful.
Capita and Maximus said the majority of people were satisfied with the process and they were working with charities and disability organisations to improve their services further.
Six years ago Alex caught a cold that led to a life-threatening illness, multiple amputations and an infection that also affected his face.
In defiance of his physical condition, the 39-year-old from Stockbridge in Hampshire, has continued to push his own limits and been involved in ground-breaking projects.
He says he pushes himself to show his eight-year-old son Sam that his disability never stopped him doing the things he wanted.
But reaching the summit of the 4,550m tall Ras Dashen in Ethiopia, using a specially-adapted buggy, proved to be a new level of challenge.
Readers, for a few days, I will only be posting links with relevant titles. This is due to not having access to a computer. I will still do my best to bring you content.
The work and pensions secretary has come under fire for backing a Tory candidate in a marginal seat who wrote on social media that people on the reality TV programme Benefits Street needed “putting down”.
The Conservative party has refused calls to drop Francesca O’Brien, who is standing in a key target seat in Gower, south Wales, despite anger after her Facebook comments were exposed by the Guardian.
Thérèse Coffey, the minister in charge of the country’s benefits system, said it was a “matter for the people of Gower” on whether O’Brien should be the constituency’s next MP.
In posts unearthed by the Guardian that have since been deleted, O’Brien, 32, wrote in January 2014: “Benefit Street..anyone else watching this?? Wow, these people are unreal!!!” Advertisement
In response to a friend’s comment, she wrote: “My blood is boiling, these people need putting down.” In further comments under her post, O’Brien apparently endorsed a friend’s suggestion for “twat a tramp Tuesday” to “take your batts [sic] to the streets”.
Asked whether O’Brien should be a candidate given her comments, Coffey told BBC Radio 4’s Today programme: “What she said is clearly wrong, clearly wrong. I’m led to believe it was early in 2014. I don’t know Francesca at all.
“She has apologised I’ve been told, that is important. And I recognise that these comments are not ones with which I would associate myself in any way.”
Pressed again on whether she should be standing, Coffey added: “I think that will be a decision for the people of Gower to make the choice on who they want to be their next member of parliament.”
A spokesman for the Conservatives confirmed the party was standing by O’Brien despite her comments prompting widespread outrage.
The Labour party’s chair, Ian Lavery, said: “Removing a candidate who used such vile language about people on benefits should be a no-brainer.
“The cuts to benefits and universal credit programme that Thérèse Coffey and her party are responsible for have forced people into poverty.
“It is shameful that Boris Johnson is allowing Francesca O’Brien to stand for his party in Gower. This reveals the Conservatives’ contempt for the less well-off.”
Benefits Street, which highlighted the lives of benefits claimants on a road in Birmingham, prompted controversy when it aired in 2014. The programme attracted 4 million viewers but also more than 100 complaints to regulator Ofcom of unfair, misleading and offensive portrayals of benefits claimants, alleged criminal activity and excessive bad language.
After being approached by the Guardian, O’Brien – who was selected last month in an open primary – apologised for the comments which she said were “off the cuff”. She added: “These comments were made off the cuff, a number of years ago. However, I accept that my use of language was unacceptable and I would like to apologise for any upset I have caused.”
Gower was won by Labour by little more than 3,000 votes at the 2017 general election and is a key marginal that the Conservatives will be targeting. It was won by the Tories in 2015 by just 27 votes.
Top Gear presenter Paddy McGuinness has spoken about the anger he felt after a stranger questioned why he had parked in a space reserved for the disabled.
The TV star, whose six-year-old twins Leo and Penelope have autism, said he was dropping his children off at a play centre when the man approached.
McGuinness admitted wanting to “bounce [him] off every car” but instead opted to “handle the situation calmly”.
“I tried to explain to him that not all disabilities are the same,” he tweeted.
“The ignorance and sheer pomposity of telling someone they don’t look disabled really makes my blood boil,” he continued.
“If you ever find yourself in a similar situation, stay calm, take the deep breath and educate the ignorant,” he wrote.
McGuinness and his wife Christine revealed their twins have autism in 2017. They also have a three-year-old daughter, Felicity, who was born in 2016.
Last year the Take Me Out host revealed he and Christine had finally managed to have a family holiday for the first time in four-and-a-half years.
Speaking on BBC Breakfast on Monday, Christine McGuinness revealed she faced situations like the one her husband wrote about “every weekend”.
“I try and educate people as much as I can,” she said. “I’ll take any opportunity to tell people about autism, because it’s the only way we can help people understand.”
Mrs McGuinness said it felt “awful” to have to explain the nature of her children’s disability and that it was “difficult enough” without having to deal with situations like the one her husband described.
“I would expect adults to understand a little bit more,” she went on, calling for people to be “a little bit more kind and polite”.
The National Autistic Society said the incident McGuinness described was “another example of how far we have to go before autistic people are understood and accepted in society”.
“Only 16% of autistic ppl [people] feel the public understand them in a meaningful way,” they tweeted after McGuinness, an ambassador for the charity, made his experiences public.
To attend my PIP tribunal I had to pass through airport-type security. A guard checked my bag, lurking within which was my deadly knitting (a jumper for my grandson). This was confiscated and I was given a receipt. Then a bottle of water was discovered, cleverly concealed on the top of my bag. It could only be returned to me if I took a large swig, and presumably did not keel over having ingested some noxious substance. It took me quite a while to recover from all this.
It also took a while to recover my knitting – mercifully intact. Mo Hutchison Maidstone, Kent
Almost 30 years ago, you exploded into our lives. Exploded is an appropriate term because we had no warning about your condition. It is fair to say that I was devastated. I felt I had been catapulted into a world in which I did not want to belong.
My early memories of that time are painful. I remember a nursing assistant in the hospital picking you up from your cot without permission and announcing, “Ooh, I love Down’s babies!” Well-wishers looked at me pitifully as they asked, “Didn’t you have the test?”
They were dark times and it was not an easy transition, but your older sister, who was two when you were born, welcomed and adored you. Your younger brother was born two years later and then, after three more years, there was another sister for you. Family life was chaotic. There were a lot of fun times, but also embarrassment and frustration, such as the time you took off your clothes in a department store, or flushed your sister’s makeup down the toilet.
Your learning disability is such that you have no spontaneous language and require 24-hour supervision and support. Your additional needs demand a rigid structure and routine.
Your brother and sisters have now grown up and live in their own homes. Your dad and I got divorced, an unfortunate casualty, in part, of the pressures of raising a disabled child. You are living with me, still enjoying Postman Pat and Disney.
I wonder how you make sense of all the changes? I know your quiet acceptance masks a much deeper understanding of human nature than any of us could hope to achieve. Your dad and I enjoy a good relationship now and he continues to be a big part of your life. Your siblings are always popping in for an audience, and an essential hug from you. You say little, but your presence is immense. You are their counsellor and their mentor. For them, you reinforce the essential simplicities of life, things we often lose in the chaos and mundanity of everyday existence.
The positive contribution you have brought to our lives is immeasurable, and that extra chromosome I so despised in the early days of your life is now revered, with gratitude, as an integral feature of the wonderful person to whom it belongs: you.
You are the glue that binds our unique, amazing family together. I feel privileged to be your mum.
The human rights of many young people with learning disabilities and autism in mental health hospitals in England are being breached, MPs and peers say.
The Joint Committee on Human Rights says hospitals can inflict “terrible suffering on those detained… causing anguish to their distraught families”.
Its report urges an overhaul of mental health law and hospital inspections.
“It must not be allowed to continue,” said Harriet Harman, who chairs the committee.
By law, young people with learning disabilities or autism detained in mental health hospitals must have treatment that is necessary, appropriate and available.
But the inquiry, launched in January, heard evidence of “a significant increase in distress and a worsening of symptoms for those detained, particularly where segregation and restraint have been used”.
“We are concerned that a very broad approach has been taken to the ‘appropriate medical treatment’ requirement… and the approach appears to be that the most basic provision of care satisfies this test,” the committee says.
“We consider the human rights of many of those with a learning disability and/or autism are being breached in mental health hospitals.”
‘Bone snapped’
One young man told the inquiry: “I did not know what was happening.
“Looking back at it now, it does not feel real. It feels like some sort of nightmare.
“It was not a safe place. It was not a treatment room. I got no assessment or treatment done.
“There was no care. I was just put in this room and I lay there and went to sleep.”
Another had his arm broken in a restraint, according to his mother. “His arm was wrenched up behind his back until the bone snapped. He was not then taken to accident and emergency for 24 hours even though his arm was completely swollen,” she said.
Another mother said her son had been kept in isolation for up to nine hours at a time.
“The rule was that he could not leave until he was quiet,” she told the inquiry.
“With his anxiety and sensory presentation, there was no way this was possible.
“He started to bang his head against the wall and would bite the wood in the doorframe out of desperation.”
Too often, families are excluded from decision-making and when they try to intervene are viewed as hostile and a problem, which is unacceptable, the report says.
Families must be recognised as “human-rights defenders”, it says.
The committee says it has “lost confidence that the system is doing what it says doing”, while the regulator, which should be a “bulwark” against abuses, is failing and in urgent need of reform.
The MPs and peers also say they have no confidence government targets to reduce the number of people with learning disabilities or autism in mental-health hospitals will be met.
They demand:
a special No 10 unit to safeguard the human rights of young people with learning disabilities and autism
an overhaul of inspections, to include covert surveillance and unannounced visits at night and weekends
only individuals who will benefit from treatment are detained in mental hospital
families are fully involved in decisions
“This inquiry has shown with stark clarity the urgent change that is needed and we’ve set out simple proposals for exactly that,” Ms Harman said.
“They must be driven forward urgently.”
Ian Trenholm, chief executive of the Care Quality Commission, which regulates health and social care services in England, said many of the report’s recommendations relating to the watchdog were already under way, “although we are clear there is much still to be done”.
Mr Trenholm said an independent review of the CQC’s regulation of mental health hospitals had been commissioned and the findings would be used to strengthen this work.
“We know we need to improve how we regulate mental health, learning disability and/or autism services so we can get better at spotting poor care and at using the information people give us,” he said.
“We are working hard to improve and we want to involve people, families, carers and stakeholder organisations to ensure we get it right.”
Whether it’s the requirement to call premium rate help lines, or having to provide evidence of their disabilities, the experience has put many fans off.
Now Ticketmaster is introducing a new system that allows gig-goers to book tickets online “like anyone else”.
BBC reporter Alex Taylor, a wheelchair user who regularly attends concerts, called the move a “huge step forward”.
Ticketmaster’s scheme allows fans to submit details of their disability online. Once validated, the information is bound to their profile, meaning they can book tickets for all future gigs without extra effort.
In participating venues, accessible seats will be clearly labelled on the seat map like any other ticket – whether that’s in the range of a hearing loop, or in a wheelchair-friendly zone, with a free companion ticket.
“It’s something we’ve been seeking to address for some time now,” Ticketmaster’s MD, Andrew Parsons, told the BBC. “Fundamentally, all fans deserve equal access to live entertainment.
“The plus side of this system is that, in the future, the fans won’t have to do anything. They will be able to buy their tickets like anyone else.”
The booking system was soft-launched in two venues, Glasgow’s SEC and Cardiff’s Motorpoint Arena, a fortnight ago.
“The feedback’s been really, really positive,” said Parsons. “We’re very keen to roll it out to a host of new venues now; and I’m challenging all of our teams on that.”
He said that arenas in Sheffield, Leeds and Newcastle would be enrolled in the scheme by the end of the year, with more venues in more countries to follow in 2020.
Ticketmaster’s new system is a huge step forward for the disabled community – the end of a needless digital divide. The traditional accessible ticket line route (specialist phone numbers open at set hours), is not only laughably cumbersome and time-consuming in the digital age, but also the opposite of accessible for disabled people, especially those who may have difficulty using the phone.
Now, finally, a major player has begun to take the plunge (albeit tentatively), helping explore technology’s full potential as an accessibility tool. Of course this is not before time and could’ve happened sooner. Research by the UK charity Attitude is Everything has been vital in highlighting the issue and forcing companies to take their earplugs out. Enabling disabled customers makes financial sense: The purchasing power of the community, known as the purple pound, was estimated to be worth around £249bn to the economy in 2017.
But more work needs to be done. Launching at SEC Hydro, Glasgow and Motorpoint Arena, Cardiff shows willing but far from a full UK-wide commitment (Birmingham, London?), although Ticketmaster promise further roll-outs.
Ultimately, this is a first-step, a warm-up to a headline act of ticketing equality that I, as a wheelchair user, have longed for my whole life. The whole point of music, and art as a whole, is that it is accessible to all – and most powerful live.
Ticketing shouldn’t be a barrier, but a route in. I’ll meet you at the front.
More than three million disabled people attend a concert every year and disabled music fans make up 11% of the live music audience, according to government statistics.
But the UK charity Attitude is Everything, recently found that 82% of deaf and disabled music lovers had faced difficulties attending live music events, while 83% had been discouraged from buying tickets because of inaccessible booking systems.
But if someone came to your door with a blue pumpkin – would you know what it means?
Some parents want to spread awareness of autism by turning their pumpkins blue, or having blue plastic pumpkin containers.
The idea is it signifies a person trick-or-treating might have some specific needs.
According to the NHS, people with autism can experience problems with social interaction and communication.
The blue pumpkins are well known in the USA but they are growing in popularity here too, with some high street stores selling them.
There are also teal pumpkins which indicate food allergies – so instead of sweets or food children are given glow sticks.
The National Autistic society says there are things everyone can do to be mindful some trick or treaters could be autistic.
Tom Purser, Head of Campaigns at the National Autistic Society, said, “Halloween is an exciting time of year for many autistic children and adults.
“But it can be really difficult for autistic people who struggle with unexpected changes or who have sensitivities to noise, touch and light.”
Here are some of their suggestions:
One tip is to go trick or treating during the day.
Going out when it’s dark might trigger anxiety so the National Autistic Society suggests trick or treating during the day could be better.
Plan your trip together and create a visual map of the route and help prepare for the houses you’ll visit and who might answer the door.
Use apps to help prepare them.
You can also pre-arrange visits to a limited number of houses – so they know what to expect.
Dressing up can be fun for some but if the costume isn’t comfortable it can make it harder.
The advice is to pick something the child is passionate about and it doesn’t have to fit in with the “scary” theme.
It’s good to get them involved in planning.
The charity says the public can play a big part in helping to make it easier for people with autism.
It says if a child is distressed it can be made even harder by judgemental tuts and stares from other people, who see someone acting differently.
Try and be patient and understanding; they may need more time to process information or to be asked what kind of treat they’d like.
Tom Purser from the charity says, “Autistic children and adults make up a large part of our community – around 1 in 100 people – and should be able to enjoy Halloween just like everyone else.”
The National Audit Office announced last week that it is to investigate how the DWP monitors suicide by claimants, after ministers refused to release figures.
Frank Field, chair of the work and pensions committee, asked ministers for details of any data they held on suicide by claimants, but was met with a wall of silence.
Field wrote: “I struggle to believe that, given the time it must take to put together evidence for inquests, attend court hearings, and internally review the decisions, that there is no record of such.
“It shocks me even more that the DWP is apparently unconcerned with the most drastic efforts of its policies and conducts no internal monitoring of the tragedies in which it is complicit.”
The NAO have said that they will ask the government to reveal any information they hold on the issue and that they will consider trying to create the data themselves if the DWP continue to refuse.
The level of attempted suicide amongst disabled claimants who are unable to work is believed to have more than doubled since the introduction of employment and support allowance and the work capability assessment in 2008.
A survey of data collected by the NHS in 2007 and again in 2014 showed that the percentage of claimants who had tried to take their own life was 21% in 2007, compared with 6% of the general population.
In 2014 this had leapt to 43%, compared to 7% of the general population.
Pam Bebbington met her husband, Mike, through a personal ad in her local paper. She’s been married for 21 years, and appreciates having a soulmate. “Relationships are important because they give you a life companion,” she says. “You can share things and cuddle up.”
But Bebbington, a consultant at self-advocacy charity My Life My Choice (MLMC), says many of her learning disabled peers struggle with relationships. “Finding the right person is hard. Parents and carers can get in the way and curfews [such as in supported housing], money and travelling all make it difficult.” She says care staff must “allow people to have a relationship and encourage them to do so”.
Supported Loving originally began two years ago as a social media campaign. Since then it has grown according to demand, offering good practice resources developed by support organisations and people with learning disabilities, some of whom feature in videos used in training.
Claire Bates, Supported Loving founder, says the campaign’s ultimate aim is mandatory training in sex and relationships.
She believes supporting someone’s emotional and intimate needs should be par for the course in social care. “This shouldn’t be [in] the ‘too difficult’ pile,” she says. “People with learning disabilities are often so far away from having a sexual partner, they need support to meet someone first. We need to help people have meaningful friendships and from that will come a sexual relationship, if they want one.” Advertisement
Supported Loving’s latest development is an online toolkit contributed to by a range of organisations, including family planning associations, care providers, specialist dating agencies, and staff working in relationship and sex education. There is practical advice on topics including contraception, sexual health, masturbation, online dating, LGBT relationships and sex workers.
There are also plans to publish a charter promoting the relationship rights of learning disabled people, which MLMC, Supported Loving and social inclusion charity National Development Team for Inclusion are developing.
One of the toolkit’s guides outlines how relationship support should be a vital part of a care professional’s role. The tips and examples, contributed by training organisation Paradigm, suggest staff receive face-to-face guidance on how to have conversations about and support people in exploring sexuality, love and relationships. There must be clear policies around relationships rather than incorporating this issue into safeguarding training. Staff must also not assume people lack the capacity to form loving bonds or have sexual relationships.
Such online guidance is available alongside quarterly meetings that take place across the country. These aim to discuss issues and share best practice on everything from sexual abuse to online dating, with participants including people with learning disabilities or autism, family members and professionals working in social care and health.
Supported Loving is also complemented by research at the Tizard Centre University of Kent (Bates is the project’s honorary research associate). Michelle McCarthy, the professor leading the work, says of social attitudes: “Historically we didn’t expect people with learning disabilities to have rich, emotional lives – as if they were somehow ‘other’, and if they were physically cared for that was enough. That attitude hasn’t entirely gone.”
McCarthy’s project, which included four advisers with learning disabilities, explored the views of 40 learning disabled adults and 40 family carers and support staff. The research has yet to be published but emerging findings illustrate the very specific barriers created by social care services. These include a lack of one-to-one support, restrictions about overnight visitors and safeguarding concerns.
McCarthy explains: “The way services are structured and run is that they themselves can be barriers to people. So if you’ve only got only a few staff you can’t offer people one-to-one support to go and meet someone to have a date.”
The comments from learning disabled people gathered by McCarthy and her researchers underline just how vital it is to achieve progress in this area. When asked about why relationships are important, one learning disabled participant replied: “Sometimes I get lonely and I think if I’ve got somebody who I could trust it would make me happier.”
As Bates says: “It is people’s human right to have a relationship. It shouldn’t be a ‘nice to have’, but something that adds value to people’s lives. We are social animals; if you don’t see someone in that way, then you don’t see them as human.”
A formal complaint by the Met’s disability independent advisory group (DIAG) says members are “disappointed and angered” that the force failed to engage with them over the policing of the protests, and says it may have caused “irreparable damage” to relations with disabled people.
Anne Novis, the chair of the DIAG, told the Guardian it was the first formal complaint issued by the Met’s disability advisers in more than 20 years working as “critical friends” of the force. “We were on the point of resigning because we were hearing so many bad stories from people,” she said. Advertisement
The complaint comes after a series of confrontations between disabled activists and police during XR’s “autumn uprising” protests. A number of disabled people taking part in the protests have said they believe they were deliberately and aggressively targeted by police.
In one incident, police arrested a carer who came to help a seriously ill woman in a wheelchair adjust her oxygen tank as she protested outside New Scotland Yard. “After about an hour, I needed a carer to come and adjust my supplemental oxygen and get some medication that was in the bag on the back of my wheelchair,” said Nicki Myers, an organiser of the XR Disabled Rebels group.
“[Another wheelchair user] came down to do that for me and as soon as they arrived, we became an illegal assembly under section 14 and were arrested.”
Myers and other disabled people had been demonstrating to demand the return of independent living equipment confiscated by the Met during the initial stages of the XR protests. Equipment confiscated by police included wheelchairs, disability ramps, noise-cancelling headphones, specially adapted toilets and other items intended to make protest sites accessible to disabled people, according to sources within XR.
In their letter to the Met, the DIAG said: “The actions of the MPS [Metropolitan police service] have not been received well by the disabled and deaf community, many of whom now fear that their legal right to participate in peaceful protests can no longer be exercised if their mobility equipment is to be confiscated, and personal assistants/carers arrested.
“The effect on the relationship between the MPS and members of our community is at risk of irreparable damage. The actions in the last few weeks will have long-lasting consequences for our community and will take many years to heal.”
Novis said she had heard “horror stories” from disabled people taking part in the demonstrations, some of whom she thought may have cases against police for discrimination or violation of human rights. In one case, she said, a blind protester was released without his white cane and left to make his own way home.
Martin Marston-Paterson, an XR legal observer and a member of the Rainbow Rebels group, said information collected by the legal team suggested police were targeting disabled protesters as a “deliberate intimidation tactic”.
“In the legal team, we were prepared for violence and collating reports of police violence,” he said. “What we had not anticipated was that most of those reports would be against disabled protesters, and that is a definite pattern we have determined coming through.”
In response, the Met said it “does not single out or disproportionately target any group or community. If those involved in an assembly to protest break the law they are liable to arrest.”
Since then Disabled people’s human rights have been steadily eroded and Conservative austerity measures have hit disabled people of all ages including families with a disabled child and disabled grannies and granddads 9 times harder than other groups and for those with the highest needs 19 times harder.
The problem
Although it is not possible to be exact about the numbers due to the way the government record statistics an estimated 120,000 disabled and older people have died due to cuts to social care funding and many, many thousands more have been driven to suicide or died an unnecessary death due to cuts to social security payments or the imposition of sanctions leaving them without any money. Estimates of 130,000 deaths is an often used figure which is half a million disabled people who have died unnecessarily due to austerity cuts.
One such person was David Clapson, an ex-soldier. The coroner said that when he died he had no food in his stomach. His benefits had been stopped as a result of missing one meeting at the jobcentre. He was diabetic, and without the £71.70 a week from his jobseeker’s allowance he couldn’t afford to eat or put credit on his electricity card to keep the fridge where he kept his insulin working. Three weeks later Clapson died from diabetic ketoacidosis, caused by a severe lack of insulin. His family and other’s families are still fighting for justice which they have not had.
The UK government is the first in the world to be investigated by the UN Disability Committee, following work by DPAC, who found that disabled people’s human rights are being gravely and systematically violated by first the coalition and then the Conservative government. The chair of the committee described what is happening to disabled people in the UK as a “human catastrophe.” Hard fought for rights which earlier campaigners won are simply being stripped away.
Following on from this unique investigation into the UK government and a periodic review of the UK’s adherence to the United Nations Convention on the Rights of Disabled People the next year (2018) the UN Disability Committee has once again taken an unprecedented step requiring the UK government to report on the progress of our rights each year. . This requirement does not apply to any other country in the world because the UNCRPD commits governments to progressively improve disabled people’s human rights.
The Solution To maintain our complete independence we have no central or local government funding and rely entirely on donations and one-off fundraising. At the moment we also have no paid staff and are run entirely by volunteers. Overall national strategy is decided by a steering group and we now have about 40 local groups who organise autonomously. We work closely with many other activist groups.
We believe that for too long disabled people have been living in fear and that we must intensify our campaigning to ensure disabled people are able to live safely and are no longer forced to live in fear: fear of the brown envelope arriving, fear of having to have repeated assessments carried out by incompetent and failing corporations paid millions of pounds of taxpayers money regardless of their failings, fear of cuts to care and support funding at each annual review, and fear of going out due to the massive rise in disability hate crime which the rhetoric of successive Tory governments has caused.
What We Need Funding For
We are particularly in need of funding to help us campaign in the next general election and beyond. We believe that regardless of which party is elected we will still need to fight for disabled people’s rights and DPAC is not aligned to any one political party.
All of this will cost money and the more money we have available the more visibly we can fight back – both on the streets, in parliament and through Social Media. In the last General Election we used facebook adverts very effectively in marginal constituencies and of course we’d like our activists to be able to visit some of those constituencies to help unseat the Tory MPs there.
Here we are in Wirral helping get rid of Esther Mcvey and Chingford trying to get rid of IDS whose majority is now very small. (We are reminding him that he claimed expenses, paid for with your taxes, for laundering his underpants.)
and here is a video of us in parliament trying to raise the issue of the closure of the Independent Living Fund
In particular we always need funding for British Sign Language as do our local groups so that we are able to fully involve deaf people in our activities but this is expensive and a morning session alone can cost about £200-£250. Having funding to translate important documents into Easy Read is also essential for inclusion of those supporters with learning difficulties.
Here is an example of a document translated into easy read
We would also like funding to design, produce and distribute resources to our local groups and other supportive organisations.
We would like money to fund facebook adverts in the run up to an election. In 2017 we spent £10,000 on these but we reached a massive number of voters through these.
We also need funding to promote our new strategy for independent living which has now been adopted by the TUC and Labour Party Conference.
This sis what has been developed by disabled people
Most of our supporters are on low incomes so we would also like to raise money to cover their costs for travel and when necessary accommodation for our on-street protests and direct actions.
To meet all of these needs we are therefore hoping to raise a minimum of £15,000.
One morning eight years ago, as I was preparing to go to work, I had an unexpected brain haemorrhage. It was like being hit by a train from the inside. I fell to the floor in agony and somehow didn’t die. The bleed squashed a part of my visual cortex, leaving me permanently visually impaired. Doctors called it a sight deficit (deficit was a trendy word at the time).
I began to have bouts of stress, anxiety and depression. I would need several operations on my brain to prevent me from having a second, fatal bleed. To help me in day-to-day living I was awarded the lowest rate of disability living allowance (DLA). When I wrote a novel, Animal Lovers, I gave my main character a sight deficit as well.
In January 2018 I was told that my DLA was being scrapped. Presumably this was punishment for the notorious role disabled people played in the financial crisis. I would now have to apply for personal independence payment (PIP).
An assessor came to visit. She seemed nice. I did my best to be good company, in the hope that this would help. She asked me if I carried a white stick. I told her I had been given one but it was too short and made me look like Sooty. She laughed at this, then stopped laughing and made a note. Advertisement
Her report said that I had no visual impairment and could see well enough to drive. I was surprised by this, as I hadn’t been able to drive even when I could still see. It said I did not suffer from stress and anxiety, on the grounds that I was engaging, made eye contact and “seemed calm”. While this was flattering it didn’t consider that I had tried my best to be all these things because I was meeting someone with the power to ruin my life. The report complained that I went regularly to the theatre, without mentioning that I’d been working in a theatre and had to quit because of my condition.
It also observed that I “had written a novel”. This was my biggest mistake. Novelists are famously free from mental health problems and bad eyesight. What’s more, we are liars. I wondered if Department for Work and Pensions (DWP) staff had read my book for proof of fraudulence, like FBI agents going to John Lennon concerts in hippy wigs.
The report concluded that I was ineligible for any payments. I lodged an appeal and waited. I’ve been waiting for 80-odd weeks.
During this wait my eyesight has got worse. I have had three more operations on my brain. I have written another novel and have done my best not to starve. I have got used to the panic when an unexpected bill has arrived, the sleepless nights from dreading an undetermined future. The DWP said that long delays were to be expected, were par for the course. I moved to a cheaper, grottier flat and told the DWP – twice, to be safe.
My stress and anxiety fluctuated but got worse whenever I spoke to the DWP. A system designed to contribute to disabled people now seemed designed to contribute to our disabilities. I felt too scared to ask what was happening with my appeal. Maybe the DWP would test my eyesight by challenging me at archery. Maybe it wanted me to have another haemorrhage to see if that made any difference.
Eventually I called. I was told that an initial appeal had already taken place. There was surprise that I hadn’t attended; it was felt that my not being there didn’t help my result. The DWP said it had sent the summons to my old address. Giving it my new address hadn’t made much difference. Maybe its staff thought if I was genuinely visually impaired, I’d not see the letter wherever they sent it.
It was at this point I realised I was dealing with an entire organisation of frustrated comic novelists. Sometimes you just have to realise when you’re outclassed. They wrote to me asking, more in sorrow than anger, why it had taken so long to chase the results of my appeal. The fact that I didn’t know it was happening only added to their suspicion.
It feels odd, for someone who grew up in a welfare state, to shake off the idea of a safety net, the notion that in hard times the state will be there to help. Being accused of faking my visual impairment was my first experience of being treated like a criminal. I began to fear the state more than I feared poverty. In periods of joblessness I resisted signing on, to avoid the threat of sanctions. I may have known my rights but it felt safer not to assert them.
Still, I wonder if persuading vast numbers of people that the state is now their enemy is liable to backfire. The vulnerable have votes and one day they may use them. Then again, they might not. More than 17,000 people have reportedly died while waiting to hear if they were eligible for PIP. Sometimes if you avoid tackling a problem for long enough, the problem goes away.
Fast forward to 2019, and she has appeared on the cover of Vogue, and owns a bespoke wardrobe including items from Burberry, Gucci and Prada.
The writer and disability advocate talks to BBC 100 Women and BBC Ouch about her mission to make fashion – and the world – more inclusive.
Sinéad Burke is one of the BBC’s 100 Women 2019. BBC 100 Women names 100 influential and inspirational women each year and shares their stories. Find us on Facebook, Instagram and Twitter, and use #100Women.
Police also said they were investigating criminal damage at the Cardiff home of Cheryl Matthews.
Mrs Matthews said the assessor, employed by Capita, dismissed claims she had felt suicidal as “irrelevant”.
Capita said a worker had been suspended, it had apologised to Mrs Matthews and offered her compensation.
She said he also shouted at her 22-year-old son when he told him to leave.
Mrs Matthews, who is 45 and has long-term health conditions, said Capita had also paid her £600 in compensation within hours of lodging a complaint.
She has the painful condition fibromyalgia, cranial hypertension, and a degenerative spinal condition.
She said she had already been receiving a Personal Independence Payment of £327 a month but needed a new assessment, carried out by Capita on behalf of the Department for Works and Pensions (DWP).
“Capita wrote to me and offered to carry out the assessment in my home,” she said.
“It was a huge relief as my anxiety and poor mobility make it difficult to get around.” Image copyright Hook News/Cheryl Matthews Image caption Mrs Matthews, pictured with her husband Paul, said her health had become worse recently
She said the assessment took place in her bedroom on 16 October, but the interview deteriorated rapidly.
“I tried to explain that a few weeks earlier I’d been in so much pain, I wanted to take my life,” she said.
“I’d gone as far as visiting the GP and begging them for pills because I didn’t want to be here any more.
“The assessor just laughed, saying ‘irrelevant, irrelevant, irrelevant’.” Image copyright Hook News/Cheryl Matthews Image caption Police said they were investigating an allegation of criminal damage relating to a child safety gate
Mrs Matthews said her 22-year-old son intervened and told the assessor to leave.
She said the man pushed her son and as he went downstairs, told him: “You want a fight do you mate? I can give you a fight.”
Mrs Matthews said the man then kicked a child safety gate kept across the front door “out of the frame” and into the garden, yelling at her son: “I’ll be back for you mate – clearly you want a fight.”
In a statement, Capita said it had apologised to the family, suspended an assessor “pending an investigation” and offered Mrs Matthews compensation.
South Wales Police also confirmed it was investigating an allegation of criminal damage at the property, but added no arrests had been made.
A DWP spokesperson said: “We take these allegations extremely seriously. The assessor in this case was immediately suspended while Capita is carrying out their investigation.
“We expect the highest standards from our providers and all claimants must be treated with dignity and respect.”
Souleyman Bah was the first disabled contestant on BBC One’s The Apprentice.
But just three weeks into the season he was fired by Lord Sugar and told he was “brave” for being there – how did he feel when he was served up with that cliché from the famous businessman? And what was it like behind the scenes?
The Vacuum Cleaner, aka James Leadbitter, has run his mental health project Madlove for five years. It’s all about giving people a say in what their care should look and feel like. He tells Ouch about his new project where he has taken over a former branch of Argos in St Helens, Merseyside, and turned it into a mental health sanctuary, complete with its own blend of tea.
How hard is it to be green when you’re disabled and have to use more taxis and avoid the easy to use products with throwaway packaging, for instance. Sam Little gives us some tips and tricks on being environmentally friendly.
And we take a wry look at the newly published power list of disabled people from Shaw Trust.
The Belgian wheelchair racer (also a Paralympian) chose to end her life through euthanasia because she was suffering constant pain and seizures.
Ollie has a similar neurological condition and says it’s “important that people don’t just see the medals.”
The swimmer feels people don’t fully appreciate the daily challenges faced by athletes with disabilities.
“People are inspired by Paralympian’s medals, but even getting to the starting line is incredible.” Image copyright Getty Images Image caption Marieke Vervoort previously told the BBC ” I’m not afraid to die any more.”
The 24-year-old has a condition known as neuromuscular myopathy.
He won a gold medal on his Paralympic debut in London, then went on to win two more at the Rio games in 2016.
Speaking to BBC Radio 1 Newsbeat he said: “The news of Marieke’s death really hit close to home.
“It’s difficult to get your head around. I feel an enormous amount of empathy.
“Pushing yourself to the limit when you’ve got a neurological condition is so difficult. There are some days that I wake up in so much pain.”
Marieke Vervoort spoke to the BBC in 2016 about how the pain she had suffered meant she had to stop racing.
She said: “My mind says yes, go further, you still can do it. But my body cries, says help, stop training, you break me.”
Ollie agrees that balancing a rigorous training schedule with a debilitating illness can make it very hard.
“What is takes for your body to train is really difficult, when you’ve got a neurological condition it really can take it out of you.
“I’ve had two really tough days of training and today honestly I feel ill. That’s the reality of the situation.” Image copyright Getty Images
Reflecting on how Marieke coped with that, he said she was “an absolute warrior”.
“I think she’s so strong for not only excelling in a sport, but kind of just getting through day-to-day living.
“It’s important that people hear her story and are inspired by her spirit, that she carried on and was so strong for so long.
“And something that I’m really inspired by is everything was in her control. And I think she had a really, really positive look on what was a really difficult situation.”
A BBC poll conducted by ComRes after the 2012 Paralympic Games suggested 79% of non-disabled people think attitudes changed towards people with disabilities afterwards.
Ollie is pleased about that but said he hopes that people who were inspired by those athletes understand the “full story”.
He said that Marieke’s own story shows that it “takes a toll on not only the body but the mind”.
The expected number of employment and support allowance (ESA) claimants who are due back payments because they were underpaid when they were transferred from incapacity benefit has fallen by over 40%, the DWP has revealed.
The underpayments came about because the DWP failed to award income-related ESA to many thousands of claimants who were transferred from incapacity benefit to contribution-based ESA from 2011 onwards
The DWP now estimates that only around 120,000 people will receive payments. This is down from the original estimate of 210,000, a fall of almost 43%.
The amount paid out will also be reduced from an estimated £920 million to £610 million.
The main reasons for the decrease in the number of awards, according to the DWP, are:
The actual levels of entitlement to arrears payments are lower than expected. The average award in arrears payments is estimated to be around £5,000
A high percentage of claimants are in the work-related activity group and not receiving awards of qualifying benefits such as PIP and so are not entitled to the relevant premiums.
The process of identifying claimants who may be entitled to a payment has almost been completed.
570,000 claimants who moved from incapacity benefit to ESA have now been contacted, with just 30,000 left to contact.
The DWP has announced that some PIP decisions will be checked to see if claimants are entitled to additional payments, dating back to 2016.
The decisions to be checked relate to claimants who need help to follow a special diet and also to claimants who need help with both managing medication and with monitoring a health condition.
Special diet If you need help or supervision to follow a special diet prescribed or recommended by a health professional you may score points under the PIP descriptors for managing therapy.
You might need help to ensure you don’t eat certain foods, for example, or to make sure that you eat the right sort of food regularly throughout the day.
The review of decisions only applies to those made on or after an upper tribunal decision dated 28 November 2016, which found that such help might count as supervision, prompting or assistance to be able to manage therapy.
Prior to that date the DWP did not consider that help with managing a special diet counted as therapy.
The DWP now admits that they continued to make the wrong decisions even after the upper tribunal decision.
They will now be looking again at any awards they think might be affected, including some made on or after 28 November where PIP was not awarded.
Because it would make no difference to the award, DWP will not be looking at claims where the enhanced rate of the daily living component has been awarded:
continuously since 28 November 2016
from the start of your claim if you claimed PIP after 28 November 2016.
Any awards the DWP make will be backdate to 28 November 2016, or to the start of your claim if your award began after this date.
The DWP are not planning to carry out any face-to-face assessments as part of this review.
Managing therapy or monitoring a health condition The other change to the law relating to managing therapy or monitoring a health condition was only in existence for a short time.
The law changed as the result of the same upper tribunal decision above and applied for decisions made on or after 28 November 2016.
The judge held that where a claimant needed supervision, prompting or assistance to both manage medication and monitor a health condition they should score points for needing help to manage therapy. This leads to awards of 2 points or more.
Prior to that date the DWP had only awarded one point in total where claimants needed help with both these activities.
However, the DWP changed the law to reverse this part of the upper tribunal decision. So it stopped applying from 16 March 2017.
This means that the DWP’s review of decisions only relates those made between 28 November 2016 and 15 March 2017.
And any additional payment will only relate to that period, before the law changed back again
As above, because it would make no difference to the award, the DWP will not be looking at claims where the enhanced rate of the daily living component has been awarded:
continuously since 28 November 2016
from the start of your claim if you claimed PIP after 28 November 2016.
The DWP are not planning to carry out any face-to-face assessments as part of this review.
Vervoort, who won gold and silver at the London 2012 Paralympics, and two further medals at Rio 2016, had an incurable degenerative muscle disease.
Euthanasia is legal in Belgium and in 2008 Vervoort signed papers which would one day allow a doctor to end her life.
A statement from her home city of Diest said Vervoort “responded to her choice on Tuesday evening”.
Vervoort’s disease caused constant pain, seizures, paralysis in her legs and left her barely able to sleep.
In an extensive interview with BBC Radio 5 Live’s Eleanor Oldroyd in 2016 she said: “It can be that I feel very, very bad, I get an epileptic attack, I cry, I scream because of pain. I need a lot of painkillers, valium, morphine.
“A lot of people ask me how is it possible that you can have such good results and still be smiling with all the pain and medication that eats your muscles. For me, sports, and racing with a wheelchair – it’s a kind of medication.”
Vervoort won gold in the T52 100m wheelchair race at London 2012 as well as silver in the T52 200m wheelchair race.
At the Rio Paralympics she claimed silver in the T51/52 400m and bronze in T51/52 100m.
Asked about the fact she had signed euthanasia papers, after the Rio Paralympics she told the BBC: “It gives a feeling of rest to people. I know when it’s enough for me, I have those papers.”
The city of Diest said a book of condolence will be accessible in its town hall from Wednesday.
The writer and director, who co-wrote the Bafta-winning This is England ’88 and ’90 series, has said there is an “invisible prejudice in the industry” and called on broadcasters, drama schools, entertainment companies, and agencies to do more to address the issue.
Thorne wrote in the Radio Times: “I sit in meetings pushing disabled talent and I’m told, ‘We don’t want to over-expose them.’ I ask that parts be specifically defined as disabled and I’m told we’ll see disabled actors for the role, but they are almost never cast. I write shows that are exclusively disabled-led and they get rejected. The only one I’ve managed to get away – BBC Three’s Don’t Take My Baby – was done on a reduced budget (again).”
Thorne started out in TV on Skins in 2007, writing an episode in the second season where one character dealt with being a carer for a parent with multiple sclerosis. He wrote in the article that he had asked the role to be played by a woman with MS and Maria Miles was cast.
Thorne then created the Bafta-nominated series Cast Off, a show where every character is played by a disabled actor. When working on BBC Three’s The Fades, Thorne was successful in his request to get disabled talent on the show.
However, he said representation had not improved since then. “These were all over ten years ago and are the best experiences in casting I’ve had,” he wrote. He said disabled creatives are often not given the recognition they deserve and there is a lot of untapped writing, directing, producing and acting talent out there.
Thorne called for disabled diversity targets for drama schools, training programmes, entertainment companies and agencies, and said broadcasters – who do have targets – need to do better. He backed Lenny Henry’s proposed “representation tax relief”, which would reduce the taxes on UK film and television productions that meet certain criteria for women, ethnic minorities or disabled people.
Warren Kirwan, head of communications at disability equality charity Scope, said: “More than one in five of us is disabled, yet disability remains woefully under-represented on television.
“Only 7.4% of the characters on TV are portrayed by disabled people, and only 5.5% of those working behind the scenes are disabled. Advertisement
“Some progress has been made, but we have a long way to go until our screens reflect reality. From casting to commissioning, the industry needs to do much more to recognise disabled talent every step of the way.”
Over-65s with eating disorders are being prevented from accessing some specialist clinics despite NHS England saying they are open to all ages, the BBC’s Victoria Derbyshire programme has found. For some, such support is seen as essential in keeping them alive.
“I have a little grandson and it was his birthday last week,” Gillian Hayes, 64, tells the programme. “He wanted to give everybody a piece of cake – and I just couldn’t take one.”
Gillian has been living with anorexia since the 1960s, when her ballet teacher at drama school told her and other pupils they were “all too fat” to make it.
“It’s still ringing in my ears now,” she says.
She now lives mostly on a diet of drink supplements and says her four children are keeping her alive.
Gillian believes anorexia is still seen as a “teenage disease”. Yet her experience of the condition has become worse in later years, she says, having been sectioned three times since she was 40.
If her weight drops any lower, she will be taken back to hospital. But she says that is not the answer.
Of the 49 adult eating disorder clinics in England and Wales investigated by the Victoria Derbyshire programme, three have a cut-off age of 65, with older patients being referred to general geriatric mental health units – which some experts say are not able to provide the same level of tailored care.
This is despite NHS England telling the programme there is no upper-age limit to eating disorder services.
Two further clinics have now changed their website – after being contacted by BBC News – to remove reference to an age limit of 65, while two said they had a cut-off of 80.
And some NHS trusts don’t provide any form of specialist eating disorder services for adults over 18.
NHS England said in a statement: “The NHS Long Term Plan means almost £1bn extra each year by 2023-24 to expand and improve community mental health care so older people, including those living with eating disorders, can get early access to care, as close to home as possible.”
The Welsh Government said in a statement: “Eating disorder services in Wales consider referrals for adults of all ages. We are making improvements to services, following a significant review. The health minister has set out a series of actions to be taken in the short term and we will continue to work with health boards, clinicians and patients as this work progresses.”
MPs from the cross-party Public Administration and Constitutional Affairs Committee said earlier this year lives were being lost and destroyed by the failure of the NHS in England to provide care for people with eating disorders.
Research by charity Beat showed some specialist services had waiting times of more than five months.
It estimates that as many as 1.25 million people in the UK have an eating disorder, although the issue among older patients is so hidden that there is currently limited data available on that particular age group.
Sylvia, 62, was diagnosed with anorexia five years ago.
She first experienced the condition in her 30s, when she was pregnant and watched her “body getting bigger”.
But it really took hold when her grown-up son left home – and she became so unwell she had to leave her job as a social worker.
At times, she thought about killing herself, she says, describing her inner torment as “hell”.
Sylvia was admitted to a specialist anorexia clinic, where she was fed through a nasal tube.
But she was discharged after two months and says the clinic kept patients for longer only if they were aged under 50.
‘Symptoms overlooked’
The Royal College of Psychiatrists is now calling for care to be standardised for over-65s across the country.
It told BBC News older people with eating disorders “face serious problems around under-diagnosis and symptoms being overlooked”, due to a mixture of lack of awareness, unconscious bias, stigma and generational attitudes to mental health.
Eating disorders among the elderly are often harder to spot, it added, with symptoms often being thought of as part of a physical health problem only “with no consideration of mental health”.
Agnes Ayton, who chairs the body’s eating-disorders faculty, said the answer was to ensure the “improved training of doctors and healthcare professionals”.
Both specialist eating-disorder clinics and services for older people were under-resourced, she said.
And there was “a lack of skill within older adult services, who tend to focus on other mental disorders such as depression, dementia or schizophrenia rather than eating disorders.”
For Gillian and Sylvia, the lack of standardised care means they are left to worry about the treatment they will be able to access in future.
“What happens to me if I decline?” Gillian asks.
Sylvia has been asking herself with the same question – and fears the answer.
“If I got really unwell again, I think I would probably die. That’s the long and short of it,” she says.
Paddy Smyth is £70,000 richer after winning the second series of The Circle.
But he says the money is not the highlight – that would be all the messages he’s received as a result of being on the show.
“I’ve got so many DMs from people who have disabilities themselves or maybe their daughters or sons have it,” he tells Radio 1 Newsbeat.
“They’ve just said how me being on the show has given their kids hope.
“Some of the messages brought me to tears. You don’t realise the impact you’re having on people by just being yourself. I think that’s lovely.”
The 31-year-old has cerebral palsy, which affects his movement and co-ordination.
Paddy says his inbox is full of people thanking him for using the platform to raise awareness about the condition.
“I know I’ve divided opinion. I went in there as myself, as a person with a disability, I went in there kind of selling those insecurities,” he added.
The Circle is a Channel 4 show where “anyone can be anyone”.
On it, a group of strangers stay separated from each other in different rooms for several weeks and can only chat to each other over a made-up social media platform.
Some players (like Paddy) appear to their neighbours as themselves, but others use photos of someone else and pretend to be that person to try and become the most popular and win the cash.
At first Paddy kept his disability from the other contestants but he says it made him feel as if he was hiding his true self.
“It felt like a weight had been lifted off my shoulders, my disability doesn’t define me, but it’s a big part of me,” Paddy adds.
The 31-year-old Irishman says in his day-to-day life people see him and immediately judge him because of the condition.
He said he initially thought he’d enjoy spending time without his cerebral palsy being a factor.
But the longer he stayed on the show, he felt hiding it wasn’t the right thing to do either.
“I felt like I was being a bit hypocritical of myself, you know. It is an intense situation, but I absolutely loved every moment,” he says. Image copyright PA Media Image caption Paddy Smyth alongside finalists Tim Wilson, Georgina Elliott, Woody Cook and James Doran
Paddy, who describes himself a social media influencer, says he’s already had offers from charities and companies that want to work with him.
He was met by friends and family as he arrived back in Dublin after winning the reality TV show.
“It’s been absolutely wild times, we had a party in my house that went on into the early hours of the morning. I’m still recovering.”
Paddy says he’s got lots of plans for the cash prize including giving a portion to his mum.
“I am definitely going to be vajazzle my crutches… whenever I’m on the red carpet I want diamond-encrusted crutches.”
The Bafta winner’s CV includes TV series This is England, Skins, The Fades and the forthcoming BBC adaptation of Phillip Pullman’s His Dark Materials.
On the West End stage he had a huge hit with Harry Potter and the Cursed Child. And on the big screen, his credits include the Julia Roberts film Wonder plus The Aeronauts, in cinemas in November.
But his latest Channel 4 offering, The Accident, is possibly his darkest work yet.
The four-part drama stars Sarah Lancashire, who also had the lead role in Thorne’s 2018 adoption drama Kiri.
The Accident centres around a small Welsh community torn apart when an explosion at a building site causes a factory block to collapse with a group of teenagers trapped inside.
The long-held bonds between families and friends are thrown wide open as an inevitable blame game begins.
While the storyline is fictional, the real life tragedy of the 2017 Grenfell Tower fire, which killed 72 people, looms large in the background. Image copyright Channel 4 Image caption The community is tight but there is also a sense of isolation
Thorne explains that the plan for The Accident “was always to look at class and restorative justice” but Grenfell shifted his focus.
“I had an idea in my head and then Grenfell happened and the idea changed.
“And the concept of looking at corporate manslaughter and the way a corporate manslaughter trial might work came about.”
Thorne reveals he felt unable to take on the Grenfell story itself.
“I was actually offered Grenfell three times by three different production companies… but I didn’t feel like there were the facts in place to look at it properly without hurting an awful lot of people, trampling over people’s lives.
“It’s not to say that there isn’t a beautiful drama to be made. I just didn’t feel capable of it myself.”
But he didn’t want to leave it there. Image copyright Channel 4 Image caption An act of rebellion – a group of teenagers break into the building site
“It felt like TV could tell a story, which was not looking at Grenfell directly, but by looking at another story around that, maybe we could do a bit of light shining.”
The first person he looked to for his central character was Happy Valley star Lancashire; in fact, the part of Polly was written with her in mind.
“Sarah’s the most extraordinary actress. She is just phenomenal, she makes [rubbish] lines good,” says Thorne.
Polly is married to a local politician who championed the construction project that’s at the centre of the tragedy.
It’s left to her to try to hold the community together and begin the search for the truth.
Lancashire says: “I think with most things that Jack writes there’s something that’s fearless, he deliberately shines a light on a really difficult case where the public, political and private collide.
“And then he does this extraordinary thing, he takes a huge story and makes it tiny. He does exactly the opposite of what most people do. And then he distils it further and examines it forensically through the eyes of those who are most affected. It’s extraordinary.”
Polly’s husband Iwan is played by Welsh actor Mark Lewis Jones, who, incidentally, says Sarah “nailed” the Welsh accent.
We won’t reveal too much but there is a genuinely shocking scene in the first episode between Polly and Iwan; you could hear a sharp intake of collective breath reverberate around the screening room as it played out.
Jones says: “Iwan looks like a man who is hiding some secrets. That scene was shocking and comes out of nowhere.
“He’s a gift to play. He’s very complex and damaged. There’s a lot of layers there. But the relationship between the two was amazing to explore.
“It’s a very distorted strange love story between them.
“And they’ve known each other for a long time. We both felt that this was a relationship that started when they were kids. And they’ve grown up together. And at some point, this relationship has gone pear-shaped.”
Lancashire says: “Those scenes are challenging but that’s the best place to be. Mark is a phenomenal actor so I feel very, very privileged to have had this experience with him.” Image copyright EPA Image caption Thorne says he wants much better representation for people with disabilities on screen
Another key role in the drama is played by deaf actor Genevieve Barr. She plays the part of Debbie, a good friend of Polly whose husband is in charge of security on the fateful building site.
Thorne says getting better representation for actors with disabilities on screen is “my obsession”.
“Genevieve was Bafta-nominated about 10 years ago for The Silence and she’s barely been on telly since. And she’s an incredible actress,” he says. “I’ve worked with her three times and she’s brilliant.
“The fact that she’s not being treasured and pushed up and made into a star is a frustration.”
He believes the entertainment industry is doing “incredibly badly” when it comes to disability and inclusion.
“There’s change happening, it’s just a disappointment that when we’re talking about diversity, disability gets left out of those conversations.”
‘People need justice’
It’s clear by the end of the first episode that there are dozens of questions unanswered, gaps of knowledge that may never be filled.
Thorpe says: “I’m a writer that poses questions, not gives answers. I don’t feel capable of doing that. I hope that by the end, there’s a sense of a thesis.
“But it’s not an easy thing. And the idea that you can single someone out to blame is very, very tricky. But at the same time, it’s also very clear that the judicial system hasn’t found a way to find the answers.
“People do need justice. And justice leads to things improving. The fact that not all the Grenfell cladding has been taken down is really, really crucial, because it means that the companies that put the cladding up are not frightened enough to remove it.
“And that means that justice is failing.”
The first episode of The Accident airs on Channel 4 on 24 October at 21:00 BST.
Nik Royale is someone we covered in our early days online. We are very sorry to learn that he has had this experience.
A cyclist accused of riding while drunk says he “won’t stand for” his disability being mistaken for drunkenness.
Nik Royale asked a passing cyclist for help after finding himself “a bit lost” on a track in Bristol but was told to “go home as I should not ride drunk”.
Mr Royale, who has cerebral palsy, said: “I don’t have a choice as to whether I wobble and slur my words.”
“People assume and this is just not fair,” he added.
“I am damned if I am going to wear a T-shirt that says ‘I’ve got cerebral palsy’ in Bristol – there would not be enough room on the t-shirt to explain all the symptoms,” he said.
Mr Royale, who is known as Dolphin, said he had borrowed a bike from a friend as he wanted to go and see the Lord Nelson ship in Cumberland Basin at 09:00 BST on Thursday.
He said he stopped on the way to ask another cyclist for directions, who told him the way but also suggested he should not be riding a bike while drunk. Image copyright Nik Royale Image caption Nik Royale is also an experienced climber and ambassador for disabled sports and rights
Mr Royale said he was disappointed because he has always felt fairly treated in Bristol.
“Bristol has a nice big bubble around it as far as the way Bristolians treat disabled people – it’s amazing – and I won’t let this guy burst it but this kind of thing has to stop,” he said.
“I’m not afraid to speak out about discrimination but a lot of people either don’t talk or can’t.
“People should not be afraid to ask whether someone has a disability or not, but on the other hand people with disabilities should not take it personally if asked in a respectful way,” he said.
‘Appalling’
Ed Holloway, from the MS Society, said: “It’s appalling to hear about Nik’s experience. Unfortunately, this is all too common for people with MS too.
“MS damages nerves in your body and makes it harder to do things, like walk, talk, eat and think.
“Discrimination can make life even harder for people living with an unpredictable condition like MS, and greater public awareness of what symptoms look like is desperately needed. No one should have to put up with this type of mistreatment.”
Survey reveals how airlines and airports need to improve for disabled passengers
265 disabled people from the UK took part in a survey – run by online magazine Disability Horizons – to find out their experiences of accessible air travel within the last five years.
64% of the disabled people we spoke to found it difficult to locate information about flying as a disabled passenger when booking a flight.
Nearly 50% of respondents said they couldn’t access the toilets during flights.
For the 71 people we spoke to who haven’t flown in the last five years, the majority said that it was because “it’s too much hassle to fly”.
Booking flights as a disabled traveller
The first challenge for disabled passengers when booking a flight is finding information. Of the people who experienced issues with this:
· 37% struggled to find information on arranging assistance for disabled passengers getting onto and during the flight.
· 32% found it difficult to find details on checking in mobility equipment.
Many disabled people told us they would like to see more airlines have a dedicated accessible booking line.
One person commented: “Airline websites should have a dedicated section/page on issues relating to disability. It is often impossible to book through a third party and therefore not eligible for online booking discounted travel.”
Checking in at the airport with a disability
When checking in, of those who experienced some sort of difficulty, the biggest was the staff not knowing how to handle their medical equipment or mobility aids being checked in – 14% of people discovered this.
A passenger needing to travel with a wheelchair said: “They were concerned about my wheelchair. It was a new, fold-up power chair, but there was concern about what kind of battery it was and whether just disconnecting it was good enough.”
Boarding the plane and experiences during the flight
18% of people said that there were delays caused by lack of assistance when boarding the plane.
For example, one person told us: “I was boarded last due to having to use the ambulift and the aisle chair. In lots of airports abroad, disabled people are loaded first, which is much less stressful than trying to get to your seat whilst all the other passengers are faffing about in the lockers. I believe this to be the cause of most take off delays at UK airports”.
Disabled people also experience unsafe and discomforting transfers by staff, which can cause pain and injury.
One passenger said: “So-called ‘assistance staff’ were employees of the airline not an Assistance Team. I was manhandled in a painful and undignified manner and I was left physically and mentally traumatised.”
The worst experience during a flight is not having access to a toilet. 49% of disabled people said the toilet on the plane wasn’t accessible.
Collecting equipment at the airport
When collecting luggage, 12% of disabled passengers found that their mobility aids or equipment was damaged.
A wheelchair user said: “My wheelchair was scratched and part of the control damaged, which could only have happened due to it being thrown about or not handled and stored carefully.”
Airline and aircraft ratings
Overall, 31% found the experience with the airline ’good’, but 28% said it was ’OK’ and 17% rated it as ‘poor’.
Moreover, 29% said their experience with the airport was ’OK’, with the same percentage said it was ‘good’. But 14% said it was ‘poor’.
Martyn Sibley, co-founder of Disability Horizons said: “At Disability Horizons we believe in getting the voice of disabled people heard. This survey has certainly achieved that. I’m hopeful airlines and airports will now engage with disabled people to create actual solutions. Flying, like any transportation, should be for every human being. Let’s see an end to this avoidable discrimination.“
Accessible air travel panel debate
On Monday the 21st of October 2019, Disability Horizons will be launching its first digital panel debate, discussing accessible air travel.
Hosted by disabled influencer Martyn Sibley, five guests – who all have personal and professional experiences in accessible air travel – will talk candidly about what the airlines and airports need to do to improve.
· Roberto Castiglioni – Director of Reduced Mobility Rights Limited
· Josh Wintersgill – Founder of the easyTravelseat
· Carrie-Ann Lightley – Travel blogger and Marketing Manager at AccessAble
· Chris Wood – Founder of FlyingDisabled
· Graham Race – Accessible Aviation expert at QEF
The digital panel will be published on Disability Horizons on Monday 21, with snippets posted on its social media channels – Facebook, Twitter, Instagram and YouTube – throughout the week.
On Friday 25 October at 5pm, it will be aired in full on Facebook, where Martyn will join the Disability Horizons community to discuss the findings and their experiences.
In Colombia, the project Manos que Salvan Vidas – Hands that Save Lives – trains blind and visually impaired women to screen for signs of breast cancer.
It’s an approach based on their greater sensitivity of touch and is an additional screening method, especially useful for women under 50 who aren’t offered routine mammograms.
Filmed and reported by Elena del Estal and Víctor M Olazábal.
Edited by Elena del Estal.
Part of the A Light in Darkness project, funded by the European Journalism Centre via its Innovation in Development reporting grant.
Co-written and brilliantly directed by Shonali Bose (Margarita With A Straw) The Sky Is Pink is, at its heart, a love story. It is the story of three very different kinds of love. The romantic relationship between a strikingly normal married couple. The love between parents and their terminally ill child, and the love between two siblings.
The film is based on the true life story of the late Aisha Chaudhary and her family. Priyanka Chopra and Farhan Akhtar are brilliant as her parents. Rohit Suresh Saraf plays her brother Ishaan as a strikingly normal teenage boy and Zaira Wasim plays the teenage motivational speaker Aisha, who narrates the story of her strikingly normal family.
Her parents are each other’s first love. Her mother is strong, independent and about as far from traditional as an Indian female could be. Everything might have been perfect for this family- except that Aisha was born with a rare, terminal condition, SCID.
She spends most of her short life in hospital or at appointments. However, in between all this the family finds time to make memories, have fun, and Aisha even experiences a teenage breakup.
With an upbeat yet beautiful soundtrack, this movie has something for everyone.
The thought of losing a child would move any loving parent to tears. The thought of losing a sibling of a similar age is heartbreaking for anyone who has ever known that bond. And anyone who has ever had to think about death while their parents still live would hope that they would be left with the loving support that the Chaudhary family clearly has.
I recommend this movie highly to anyone and everyone.
Last week, the Paralympian James Brown tried to glue himself to the top of a plane as part of Extinction Rebellion’s protest at London City airport. Watching the epic performance unfold, I realised I hadn’t seen a single person with a disability who was also a climate protester. Brown is visually impaired, so while he has no direct mobility impairment I don’t imagine straddling an Embraer 190 is an easy manoeuvre. But it was a testament to democracy – and made me think about the place that people with disabilities have within the growing climate movement. As someone with cerebral palsy, I want an accessible revolution. It is everyone’s future, and that needs to be represented in both climate protest and climate policy.
Protest presents so many systemic barriers for people with disabilities, no roadblocks necessary. This was evident when the Extinction Rebellion Disabled Rebels group organised a mobile toilet service for last week’s demonstration – and the hoists and changing tables were impounded by the police before the demonstration even started. Accessibility issues in protest don’t just come from police, but sometimes from groups like Extinction Rebellion too: when street protests are held outside a hospital, many people with physical disabilities aren’t able to go about their daily lives; and if they are held across London – where only about a third of tube stations are step-free – they are often unable to participate.
I was born of climate activists. Naturally, I should be one too. But, by birth, I also have one of the most common causes of physical disability in the UK. I’m finding any drive for direct action that wells up inside me is drained by the prospect of life-limiting climate policies. As part of the environmental movement, plastic straws, which enable around one in four people with my disability to drink, will soon be banned in all drinking establishments. Yet things we could all do without – plastic packaging, six-pack rings and polystyrene cups – remain unregulated and freely flow into our oceans.
The United Nations Framework Convention on Climate Change has done work on gender equality, using “gender focal points”, people who assist in gender-related decisions about the climate. But there isn’t a list of representatives with disabilities, though the outcomes of climate change negotiations will disproportionately affect us. The Paris agreement makes clear its obligation to disability and human rights, but will people with disabilities actually be involved in the discussion? 2:19 Activist climbs plane as Extinction Rebellion takes protest to London airport – video
If we aren’t represented at the top, the impact could be catastrophic for people like me who need certain reasonable adjustments to live our lives. People often tell me, “I don’t know how you get out of bed in the morning with a disability like yours,” but that doesn’t even begin to account for the science and writing and speaking I do, the students I support, the Paralympic training I participate in, the dates I go on. I’m not able to do these things because I’m superhuman – in actuality, it has a lot to do with my motability vehicle, with its regrettable diesel engine, and my blue badge. Limited mobility does not have to mean a limited life, but new climate change policies must recognise the distinction if we are to maintain any level of disabled liberation. Let the plastic straw ban be the first and last anti-disabled, pro-climate legislation.
I was obsessed with a book when I was a kid – Ben Elton’s Gridlock – where oil barons and government agents who want to build more motorways try to murder a climate activist and scientist who invents the perfect electric vehicle. It was published in 1991, before I was born, and when electric vehicles weren’t commonplace like they are now. It just so happened that the hero and climate activist had tetraplegic cerebral palsy. He was a fictional character then, but I believe he’s the climate hero we need today. The oil barons might still want him gone, but it is essential that those responding to the climate emergency do not.
A critically acclaimed Hollywood movie opening in UK cinemas this week is shining a much-needed spotlight on how learning disability is represented in film.
The Peanut Butter Falcon stars Zack Gottsagen, an actor who has Down’s syndrome. He plays a man who escapes his care home to follow his ambition of becoming a professional wrestler. The film has won universal plaudits for its feelgood factor and optimistic messages about fulfilling your dreams and not judging a book by its cover.
But amid the overwhelmingly positive reviews, there has been little debate about how far this film truly challenges attitudes. One person’s heartwarming is another’s mawkish, and The Peanut Butter Falcon’s sentimental approach could be construed as reinforcing stereotypes about “vulnerable” disabled people triumphing over tragedy. It is a far less gritty film than 2017’s Sanctuary, for example, which reflects the human impact of the now repealed Irish law banning learning disabled people from having sex, or 2016’s My Feral Heart, about a man forced into residential care. Although the general moral of the story is to treat learning disabled people as adults, specific scenes feature Gottsagen’s character playing a childish second fiddle to his two – non-disabled – romantic leads.
Some of the coverage of the film has also been uncomfortable. How many 34-year-old actors are interviewed with their parents, for example? There has also been more focus on Gottsagen’s “struggle” with his disability than on the acting skills he has honed since the age of three (descriptions of an “unlikely star” compound this). However, given Hollywood’s previous offerings, such as Rain Man and Forrest Gump, featuring non-disabled actors as disabled characters, having a learning disabled actor playing a learning disabled character seems like a significant step forward. The directors, who met Gottsagen at an acting camp, were offered money to replace the actor they had shaped their film around. They refused.
Amid the cliches there is also authenticity in scenes reflecting the restrictive nature of institutions and in the portrayal of risk-averse, overprotective carers infantalising a grown man. So, The Peanut Butter Falcon should be welcomed as a mainstream, crowd-pleasing fable that opens the door to more truthful and raw screen portrayals of learning disability. Advertisement
More than 2,000 films made by or featuring people with learning disabilities or autism have been submitted to the forthcoming Oska Bright film festival, which opens in Brighton next week. The biennial event, founded 15 years ago by learning disabled film-makers and supported by disability arts charity Carousel, is the world’s biggest learning disability film festival and has a reputation for showing radical work (it hosted the UK premiere for Sanctuary in 2017). This year, for the first time,the short films being screened will be eligible for a Bafta.
Sarah Watson, an Oska Bright committee member, says her aim is to push for a more inclusive workforce in film as well as for fairer representation on screen (only 0.3% of the film workforce is disabled, according to UK film industry organisation Creative Skillset). Watson, incidentally, is a fan of The Peanut Butter Falcon, which she describes as “funny and heartwarming, but not too heartwarming”.
Matthew Hellett, the festival’s programmer, says Oska Bright will showcase “big bold stories from learning disabled people … hopefully people will talk about the films and have a positive outlook.” He firmly believes films like Rain Man and Forrest Gump are “completely wrong” because they fail to represent the lives of learning disabled people: “Without people that look like you on the screen, you don’t know that it’s possible for you to be there yourself.”
Better screen and stage representation for the UK’s 1.5m learning disabled people will also impact on public attitudes. Alongside glaring inequalities in health, education and housing, learning disabled people are the target of hate crime (new research from learning disability charity Dimensions shows 73% of 200 learning disabled people surveyed experienced such incidents). There is surely space both for mainstream Hollywood movies like The Peanut Butter Falcon that trickle down into the public consciousness and grassroots filmmaking that will hopefully influence change in the film industry. Both are vital if we are to see more learning disabled people both in front of and behind the camera.
Bronwyn Berg became so fed-up with people manhandling her without asking, she put spikes on her wheelchair. And she’s not alone. With a spate of disabled people reporting unwanted touching some are taking action to stop it in its tracks.
You’re minding your own business when – out of nowhere – a man you’ve never met puts his hands on your wheelchair. He starts to push you down the street and you have no control over where you’re going.
This happened to Berg. “It was really terrifying,” she says. Despite her screams “not a single person stopped to help”.
“I thought: ‘How is it that nobody is helping?’ If I was able-bodied and a man had picked me up, would I have had a different experience?”
Berg, who has used a wheelchair since she acquired a brain injury five years ago, added metal spikes to the handles of her chair to make it harder for people to take control of her after this incident.
The spikes, which don’t puncture the skin, were homemade by her partner Hal after he noticed she became anxious whenever she heard approaching footsteps.
“The heart of it is I want to feel safe in the world,” says Berg, who lives in British Columbia, Canada, and does feel safer now she has the spikes. She explains that her wheelchair is an extension of herself and if someone grabs it, it’s the same as someone grabbing hold of her.
Being touched or grabbed by a stranger without warning or consent is still an all too-common experience for many disabled people. Although people believe they’re being helpful with their actions, an invasion of personal body space can be frightening.
After accepting assistance from someone who asked her first, disabled pedestrian Chloe Tear tweeted: “I really appreciate people OFFERING support, rather than assuming I need it.”
If someone approached a non-disabled adult and touched them, you wouldn’t be entirely surprised if they were shouted at, or even accused of assault.
So why, in this era of awareness, do complete strangers act without asking?
“I think a lot of people in the UK panic about disability,” says Dr Amy Kavanagh, a visually impaired campaigner.
“It makes them feel awkward and we know a lot of people don’t want to interact with disabled people very much so they panic and their natural instinct is to use their hands and not their words.” Image copyright Dr Amy Kavanagh
Research from the charity Scope found two thirds of the British public feel uncomfortable when talking to disabled people. In particular, those aged 18-34 were twice as likely than older people to feel awkward.
Dr Kavanagh has always had low vision but noticed a significant change in attitude towards her two years ago when she started to use a white cane when out and about.
“I had this magical new thing which gave me my independence,” she says. “But I was suddenly experiencing the world as a visibly disabled person – and it made me realise how differently people would treat you if they perceive you to be incapable of doing things by yourself.”
She found she was being touched almost every day and it troubled her so much that she started a campaign to highlight the matter.
Hundreds of tales of unwanted touching have since been shared by disabled women and men using the hashtag #JustAskDontGrab – and some give details of the kind of things that go wrong when people do this.
“Bus driver pushed my wheelchair sideways to centre me and touched cushion near my legs both w/o asking. Wasn’t malicious or creepy, just dehumanising, like I was luggage” wrote Kati on Twitter.
“Pushing my wheelchair can cause injury to me & expensive damage to my chair. Touching me even lightly can cause excruciating pain,” posted Kirsty Farnfield.
“A man just tried to ‘help’ me by pushing me off a tram before Barney said it was safe to go,” Stephen Anderson wrote on Facebook. “I applied reasonable force to get him away from me… When you have a guide dog in one hand and two bags in the other, it is extremely dangerous to try and throw me around.”
Other disabled people have reported broken knuckles and dislocated fingers as a result of being pushed or pulled without being consulted.
And Berg believes the problem arises because disabled people “inspire feelings of pity, guilt and fear”.
“One thing I want to get across is it’s OK to ask if we need help. I’m not opposed to being helped. There are times when I’ve needed help getting up a hill, for example. Image copyright Browyn Berg
“But don’t be defensive if we say ‘no’,” says Berg. “I’m not a a touchy person, I’m an introvert.”
For disabled women, some strangers giving assistance can border on unwanted sexual touching, which takes the problem to another level.
Dr Kavanagh says that around twice a month she experiences men who “grope me, make inappropriate sexual comments or try and physically stop me leaving a location”.
She says: “Being touched by strangers happens every single day and even those well-intentioned touches – I’m not a slim lady so when someone grabs my arm they’re often grazing a bosom – it’s just a very intrusive and personal act without my consent.”
Dr Kavanagh says the seriousness and frequency of the problem makes her feel like an “oddity” who needs assistance.
“Disabled people can be independent and that is something society shouldn’t be frightened of.”
The seven-year-old from Sheerness, Kent, has genetic issues including an extra chromosome, multiple heart defects, respiratory problems, hypermobility and hearing loss.
After getting involved in local pageants to build her confidence, she was talent-spotted and invited to model for major fashion brands in New York and London fashion weeks.
The Department for Work and Pensions has hired nearly 1,000 new IT staff in the past 18 months, and has increased spending to about £8m a year on a specialist “intelligent automation garage” where computer scientists are developing over 100 welfare robots, deep learning and intelligent automation for use in the welfare system.
As well as contracts with the outsourcing multinationals IBM, Tata Consultancy and CapGemini, it is also working with UiPath, a New York-based firm co-founded by Daniel Dines, the world’s first “bot billionaire” who last month said: “I want a robot for every person.” His software, used by Walmart and Toyota, is now being deployed in a bid to introduce machine learning into checking benefit claims. Advertisement
The DWP is also testing artificial intelligence to judge the likelihood that citizens’ claims about their childcare and housing costs are true when they apply for benefits.
It has deployed 16 bots to communicate with claimants and help process claims and is building a “virtual workforce” to take over some of the jobs of humans. One recent tender document requested help to build “systems that … can autonomously carry out tasks without human intervention”.
The developments emerged during a Guardian investigation into one of the most radical but least understood welfare reforms since the roll-out of universal credit that will apply to 7 million people.
The DWP believes welfare transactions could be handled more quickly, accurately and cheaply using robotic process automation and is developing it for use in UC.
But claimants have warned the existing automation in UC’s “digital by default” system has already driven some to hunger, breakdown and even attempted suicide. One described the online process as a “Kafka-like carousel”, another as “hostile” and yet another as a “form of torture”. Several said civil servants already appeared to be ruled by computer algorithms, unable to contradict their verdicts.
“We are striking the right balance between having a compassionate safety net on which we spend £95bn, and creating a digital service that suits the way most people use technology,” said a DWP spokesperson. “Automation means we are improving accuracy, speeding up our service and freeing up colleagues’ time so they can support the people who need it most.”
But Frank Field, chairman of the Commons work and pensions select committee, warned that vulnerable claimants “will be left at the mercy of online systems that, even now, leave all too many people teetering on the brink of destitution”.
“We’ve already seen, in the gig economy, how workers are managed and sacked, not by people, but by algorithms,” he said. “Now the welfare state looks set to follow suit, with the ‘social’ human element being stripped away from ‘social security’.”
Key details about the automation push remain secret. The DWP has refused freedom of information requests to explain how it gathers data on citizens. Simon McKinnon, the chief digital and information officer of DWP Digital, said this year it was developing a way to “build a holistic understanding of digital personas”, but refused to say what information was gathered to do this.
The ministry has previously told parliament it gathers data from private credit reference agencies, the police, the Valuation Office Agency, the Land Registry and the National Fraud Initiative, which gather information from public and private bodies. But it is now declining to update the list, claiming it would “compromise the usefulness of that data”.
“There are concerns that government is accelerating the automation of the welfare system without a proper evidence-based consultation about its impacts,” said Dr Lina Dencik, co-founder of the Data Justice Lab at Cardiff University.
“Users have already raised significant problems and we need to understand which groups are more likely to be targeted by algorithmic decision-making than others to understand if it shows bias.”
The centre of the robotics drive is the DWP’s “intelligent automation garage”, a unit based in Newcastle and Manchester where 32 programmers design, build and run automations.
Staff are using UiPath to develop machine learning to check claims for fraud, which suggests welfare computers will autonomously learn and alter the way they make decisions with minimum human intervention.
One recent staff member at Newcastle told the Guardian they already “have ways of creating a digital image of somebody”. He stressed much of the work was secret, but said this did not mean it was against citizens’ interests.
The digital transformation is costing hundreds of millions of pounds. The DWP Digital’s budget has risen 17% to £1.1bn in the past year and IT firms have been awarded huge contracts to help run the system. The DWP is also rapidly expanding its own private technology company Benefits and Pensions Digital Technology Services, which recruited more than 400 staff in the year to April, while DWP Digital recruited 520.
A spokesperson for the DWP insisted it was using AI to help people find work, to reduce the burden on claimants to prove their circumstances, and to help vulnerable people access welfare more easily without having to provide evidence of their digital identity.
“We want to be supporting staff and citizens with the information they need, at the right time, and not disadvantaging those who are vulnerable,” they said.
However, there is evidence of rising error rates in parts of the welfare system that have already been automated. A system of realtime data-sharing between the HMRC tax office and the DWP about universal credit claimants’ earnings is triggering more and more disputes, with the rate rising fourfold between May 2017 and October 2018, according to the government’s own figures, with up to 5,700 people a month affected.
A disabled man said he has been forced to choose between paying for tablets or food after he was refused benefits.
Neil Alexander, who has had serious kidney problems since birth, said “it feels like they just want you to give and curl up and die” after he was turned down for personal independence payments (PIP).
Jessica Leigh, from Scope, said: “Fundamentally PIP is not fit for purpose. We need to see a system that provides support when people need it, not months afterwards having gone through a process of appeals.”
The Department for Work and Pensions said it is committed to ensuring disabled people get the support they entitled to.
A judge has given doctors the go-ahead to perform an abortion on a woman with severe learning disabilities who is 12 weeks pregnant.
Mr Justice Williams heard that a GP had recently discovered that the woman, who is in her 20s but has the mental age of a toddler, was pregnant.
He was told that a police investigation was under way.
The judge said the woman may have been raped or been made pregnant by a man who also had learning disabilities and a lack of understanding. Police would carry out DNA tests in a bid to establish the identity of the father, he was told.
He analysed evidence at a hearing in the court of protection, where judges consider issues relating to people who lack the mental capacity to make decisions, in London on Friday. Advertisement
Bosses at an NHS hospital trust asked him to allow doctors to perform a surgical termination.
A lawyer representing the trust said the woman had lived with foster carers for most of her life.
The barrister Eloise Power said the woman’s foster parents were sure that an abortion was in her best interests.
Power said medical specialists and council social workers involved also all agreed that a surgical termination was the right option.
Williams said medics could restrain the woman in order to administer a general anaesthetic if necessary. He said the woman, who lives in the north of England, could not be identified in media reports.
He also said the names of the hospital and council involved could not be revealed in case that information helped identify the woman.
Williams said authorising the termination of a pregnancy was a “significant interference” in a woman’s autonomy.
But he said the woman’s best interests were the “lodestar” of his decision, and evidence showed that allowing the pregnancy to continue would harm her. Evidence showed that the pregnancy was already affecting the woman’s mental health and causing her to behave in a “somewhat more aggressive fashion”.
She would have to go for intrusive medical examinations if the pregnancy continued and would not be able to care for a child. He said more than 30 professionals had been involved in the case and all thought termination was the right option.
But she’s also among the 10% of people who live with Multiple Sclerosis (MS) under the age of 18.
Bella tells us how she navigates treatments and medication as well as managing her social life and chronic fatigue.
She’s also had to confront a few bullies along the way but remains determined not to let MS dictate her life…especially when, she admits, she experiences FOMO – a Fear Of Missing Out.
Bella’s mum, Sarah, also gives a few top tips for parents on how to support your child with a chronic illness.
Research by learning disability charity United Response found there were more than 6,000 reported cases in 2018-19, a rise of just under 12% in a year.
The police force area with the largest number was West Yorkshire (818), followed by Greater Manchester (464).
Chloe Tear, a disability blogger from West Yorkshire, said disabled people faced “malicious comments” every day.
The 21-year-old has mild cerebral palsy and is partially-sighted.
‘Really hurtful’
She said three years ago she was in a wheelchair when eggs were thrown at her.
“It really shocked me. The person who did it knew me, knew that I was an open book about my disability.
“It’s really hurtful when you spend your whole life trying to be positive about it.”
She said the incident, which she did report to the police, took a long time to recover from. Image copyright Chloe Tear Image caption Comments Chloe Tear has received include being questioned about her sight when sat on a train
Amy Williamson, 23, from Leeds, has Down’s syndrome and faced abuse from a group of boys as she got off a bus near her home.
“I think there were 20 of them, they were calling me names and saying mean stuff about my boyfriend.”
Her mother Karen said it severely knocked her confidence.
“Her independence has been affected. Even in her own street she doesn’t feel comfortable and safe anymore.”
United Response submitted Freedom of Information requests to 45 police forces across England and Wales.
It received disability hate crime figures from 34 forces, of which 27 gave figures for charges or prosecutions while 21 provided the numbers of disability hate crimes committed by repeat offenders.
In England and Wales, 6,263 disability hate crimes were reported in 2018-19, while in 2017-18 the figure was 5,599. In 2016-17 it was 4,079.
The charity’s figures also showed fewer people were being charged or prosecuted for disability hate crimes across England and Wales. Image caption Karen Williamson now meets her daughter after she faced abuse at a bus stop
West Yorkshire Police received 818 reports in 2018-19 – a rise of 53% on the figure for 2017-18.
The force said an element of the rise in reports could be attributed to its “high standards” in crime recording.
Supt Richard Close added: “Residents should be free to live their lives without fear, hatred or intolerance and there is no excuse for such behaviour.”
Ms Tear said: “I think the figures are absolutely shocking but I’m not surprised.
“The odd malicious comment is part of our daily life.”
She said more education was needed to address people’s ignorance and reliance on stereotypes.
“As a society we are getting better and hopefully the younger generation will grow up to be more respectful.”
The form asked claimants to describe their condition while avoiding words like “chronic” or “degenerating” – because they “sound worse than they are”.
It added people may want to “avoid terms such as depression, ME or low back pain etc and use more general terms” instead.
Disability campaigners said the “disgusting” wording “breaches our rights”, adding: “Our access needs can only be met by disabilities being properly noted”.
The Department for Work and Pensions (DWP) today confirmed the document was being withdrawn after concerns were brought to their attention by the Mirror.
It has not been confirmed how many Jobcentres the form was used in, but sources insisted it was only in use in “one area”.
The full context or purpose of the form – which included a Jobcentre logo – was not clear from a version posted online by campaigners.
However, it had the same wording as a “positive health statement” circulated by the Dorset NHS trust and dated to 2013.
The NHS Trust described the form as a useful aid to “think how you can present yourself as someone living with a health condition in a positive way”, when applying for a job.
Labour’s Shadow Minister for Disabled People Marsha De Cordova raised the document in the Commons.
She said: “It cannot be right that the department is expecting disabled people to downplay their disability or health condition.”
It was raised by the campaign group Disabled People Against Cuts in Sheffield, who tweeted: “This needs to be addressed NOW and without delay.”
Addressing Work and Pensions Secretary Therese Coffey, the group said: “Withdraw this disgusting publication, which breaches our rights, from circulation NOW.
“Our access needs can only be met by Disabilities being properly noted.”
A DWP spokesman said: “This was well-intentioned local advice but has been withdrawn, as we would always encourage jobseekers to speak freely about a health condition or disability.
“The number of disabled people in work is at a record high and we are proud of the support we provide such as grants of nearly £60,000 for workplace adaptions under Access to Work.”
A wheelchair user says he was “forced to wet” himself when he was left at a bus shelter for an hour.
Ryan McDade said he was passed by three Pronto buses in Mansfield, Nottinghamshire.
The 20-year-old said he felt “dehumanised” by the drivers and that the experience was “humiliating”.
Bus operator Stagecoach East Midlands wrote to Mr McDade to apologise after reviewing CCTV footage adding “we do not condone this type of misconduct”.
Mr McDade had spent time in Mansfield on Friday and was trying to return to Portland College, a residential specialist college near Ravenshead.
The musical theatre student, who has cerebral palsy, said: “We were waiting about an hour and in that time three bus drivers just drove past, one of them even opened the door to the bus and just said ‘no’.
“We were waiting so long that I was forced to wet myself, which is really humiliating.
“There was a lady sitting next to me, I cannot tell you the embarrassment.”
Mr McDade suffers from curvature of the spine, and therefore cannot use public disabled toilets.
‘It’s disgraceful’
He said it was the first time he was “point-blank refused” entry on a bus, but he said there was space in the wheelchair area of the buses.
“It was dehumanising, getting on a bus [as a wheelchair user] is a nightmare,” he said.
“The bus is my way of having independence, so if somebody were to say ‘you can’t get on the bus’ like they did on Friday, it’s like somebody’s taking away that independence.” Image copyright Daniel Mullins Image caption Stagecoach East Midlands – which operates Pronto buses – said it was “extremely concerned” by what happened to Ryan
Ceri Smith, policy and campaign manager for disability charity Scope, said: “It’s disgraceful that Ryan had to endure this horrendous experience.
“Public transport should serve everyone in our society, but disabled people are being let down every day.”
Stagecoach East Midlands operates the Pronto bus service.
In a written response to Mr McDade’s complaint, the company said offered its “sincere apologies to Ryan”.
It added: “Two of our staff have failed to comply with the company’s policies in respect of both stopping for passengers and disability awareness.”
The drivers will be “interviewed under the company’s formal disciplinary procedure”.
A spokesperson for the operator added: “We are very disappointed that Ryan was let down on this occasion.
“We have also spoken directly to Ryan’s mother to apologise.”
Campaigners have forced a government U-turn after demonstrating that chronically ill claimants suffering severe pain were wrongly denied disability benefits on the basis that they were not taking powerful, opiate-based painkillers.
Bristol Law Centre said disability benefit assessors routinely assumed that if a claimant had been prescribed an “over the counter” drug such as paracetamol then their pain must be mild or moderate, and denied or reduced benefits accordingly.
It estimates that thousands of claimants nationally have been incorrectly refused disability benefits in this way.
Campaigners had argued that it was unfair and dangerous for assessors to use painkiller strength as a proxy for the level of illness because GPs were reluctant to prescribe stronger opiates because of the harmful side effects. Advertisement
The law centre said the guidance had encouraged ill and disabled people claiming Personal Independence Payments (PIP) and Employment and Support Allowance (ESA) to demand stronger drugs from their GP as a guarantee of benefit eligibility.
“Every year, thousands of claims for disability benefits are refused because of an over-reliance on analgesics as a guide to pain levels. The signal these assessments send to claimants is that they must go back to their doctor and ask for stronger pain relief,” said Andy King, a benefits adviser at Bristol Law Centre.
Public Health England recently warned of the dangers of wrongly prescribed opioid painkillers for joint and back pain. Over half a million people had been on addictive opioid drugs for longer than three years.
The Department of Work and Pensions (DWP) has issued new guidance which makes it clear that “healthcare practitioners [disability benefits assessors] should be mindful that the level of analgesia used does not necessarily correlate with the level of pain”.
The law centre’s study of 39 benefit cases where claimants were in severe pain found that in almost all cases benefits were either wrongly refused or paid at too low a level. In 25 cases the severity of the patients’ condition was underestimated by assessors because they had been prescribed “mild” painkillers.
Several of the cases involved claimants with arthritis, fibromyalgia or degenerative spinal conditions who had reduced their dependency on powerful opiates on the advice of their GP. This was taken as proof by assessors that the claimants could walk 200 metres unaided – a key factor informing eligibility for PIP.
In at least one case assessors’ reliance on painkiller strength as an indicator of pain severity appeared to have more influence on the benefit decision than detailed written evidence of the severity of the illness supplied by the claimant’s NHS doctor.
Many of those refused benefits successfully appealed against the decision at tribunal. There, the court asked detailed questions about the pain and claimants’ daily activities before concluding that the assessors – employed by private contractors Atos and Maximus on behalf of the DWP – were wrong.
Bristol Law Centre said it welcomed the DWP changes – the result of over a year of pressure – but would continue to monitor the situation to ensure that the new advice was properly rolled out to assessors.
A DWP spokesperson said: “The type and level of medication is one of a number of factors taken into account when carrying out an assessment, which considers all aspects affecting a person’s functional ability. We constantly review our guidance and have updated it in line with expert medical opinion.”
Ken Butler of Disability Rights UK said the study showed that assessors were not giving proper consideration to claimants’ own evidence about the severity of their condition. “It’s clear that opioid prescription and use alone cannot be the sole judge of how someone is affected by their ill health condition or disability,” he said.
A row has broken out between a football club and its disabled supporters’ group.
Wrexham FC said the club’s Disabled Supporters Association (DSA) went “on strike” after it had a ticket and an on-pitch presentation request refused.
The DSA usually assigns the spaces for wheelchair users but the club said it had to do this itself at a recent match and is now running it itself.
The DSA said the issue was about the presentation.
Wrexham Supporters Trust, which runs the club, spoke out following a “growing social media storm”.
The row centres around the club refusing a request for complimentary match tickets and a pitch presentation.
The DSA is part of Allies in Access group and it wanted a similar Midlands-based association to visit for the Ebbsfleet match on 12 October and have the presentation on the pitch.
The club said it was unable to help due to “competition rules” but an offer remained open for a pitch-side photo call on a non-match day as a compromise.
However, following the disagreement and “strike”, the club’s statement said the DSA’s “presence will not be required on the platform… for the remainder of the season”.
“Our disabled supporters rely on the provision of services and we have to ensure they continue to receive a high-quality service without the potential for any possible disruption as it really makes a difference to their match day experience,” the statement said.
“This has been a difficult decision to take by Wrexham AFC but we must ensure the services for some of our most vulnerable supporters are never placed in jeopardy and taking these services in house is the most sensible solution at this time.”
The DSA said the “sour point” was the club’s response to refusing the presentation.
The DSA claimed it had been told that was because it was not a club-related matter.
A statement added: “Rightly or wrongly, this was taken very negatively by members of the Wrexham DSA committee who took it in the context of ‘despite the hours we give to the club on a match day, we are not club related’.”
It said that left some committee members frustrated and said they would not be on duty for the game against Ebbsfleet.
I feel like I’ve got two identities: being deaf and being black. It’s a double struggle to fit in and I’ve had to work 10 times harder than my classmates. [A recent report from the National Deaf Children’s Society, which analysed government data, found deaf pupils in England are struggling “at every stage of their education”.]
I was born hearing but became ill with meningitis when I was a baby. After that I became deaf. I grew up in Barking and Dagenham, in East London, with my mum, who works as a caterer and a cleaner at two different colleges. I was bullied in primary school – people would say “ew, you’ve got hearing aids in” – and felt like I didn’t belong. By the time I got to secondary school I had accepted my identity, but that didn’t mean everyone accepted me. I communicate using sign language, so people would stare and I knew I stood out.
I worked hard in secondary school, but was still told I wouldn’t be able to go to college or university. I was told deaf people didn’t go on to higher education. “Which deaf people do you know who have gone to university?” someone asked. The truth was I didn’t know any, because I had no role models.
This made me frustrated, and my frustration came out as anger. The main way I dealt with my anger, though, was positive. I channelled it into a determination to show people I could achieve, despite my disability.
I got my GCSEs and applied to do BTec business level three at Barking and Dagenham College. I spent two years at the college and the vocational course was fantastic. I met so many different professional people, I had a mentor and people supported me. I’m now able to study a degree in politics and economics and have completed my first year at Leicester University.
However, the discrimination hasn’t gone away. The first person I met when I got to university immediately made a racist joke. He said: “I’ve got loads of black friends, don’t worry.”
I also get combined prejudice for being both black and deaf. I chose a white hearing aid because I like it and I’m proud of who I am, so I don’t mind if people notice it. But recently a deaf woman pointed at me and said: “Look at him, his hearing aid doesn’t match his skin colour!”
It’s difficult to keep calm all the time. I try to stay positive, but quite often I feel like I want to give up. When that happens, I tell myself I’ve got to look to what I can achieve next. That keeps me going.
I made a few friends at uni last year, but so far I feel I’ve missed out on the full university experience. Next year, I’m transferring to Leeds; it’s a bigger city and I think there will be more deaf students, so I’m hoping I’ll feel less isolated.
I want to talk about my experiences and show young deaf students that it’s possible to go to college or university and achieve things. I got a 2:1 at the end of my first year of university, which I’m proud of, and last year I was named Leidos Career Ready UK Student of the Year.
I want to tell other deaf black students to keep working hard. Have the right attitude and arrive on time, because you can achieve anything if you stay strong. To young people with disabilities, I say keep your identity and be proud of it. Society will always try and push you aside; show them you’re not going to disappear.
Ron McCallum and Mary Crock share an office in their Sydney home. The couple live together, teach together and work together. In 2017, they wrote a book about disabled refugees together. Both are law professors – Crock in public law and migration, McCallum in industrial law – and both are passionate about social justice. Their chairs are back to back and a portrait of McCallum, painted by Crock, hangs on the wall. But, says McCallum with a laugh: “It’s easier to share a bed than an office.”
They have been together for more than 34 years. They met at a dinner party in Melbourne in 1984, when she was 25 and he was 35. McCallum, who has been blind since birth due to retrolental fibroplasia (RLF), heard her “beautiful mellow” voice across the table. When he introduced himself, she said: “You are obviously an RLF child.” As the daughter of Australia’s first full professor of ophthalmology, Gerard Crock, she was at ease in the company of blind people. McCallum was captivated: “Her voice, her breathing, her inquiring mind and her scent overwhelmed me,” he writes in his autobiography.
Crock was also drawn to McCallum. After their second meeting a few months later, she knew they would be together. “I remember walking on the beach thinking, ‘What will it be like married to a blind man?’. Not ‘Is this going to happen?’ But ‘What will it be like?’”
He proposed six weeks after that second meeting. “We were sitting on the couch. I said ‘Anyway I think you’ve just got to marry me, will you marry me?’. And she said, ‘Yeah, I guess.’”
They married and soon became parents to three children. Then in 1991, Ron was appointed professor in industrial law at the University of Sydney and the family moved from Melbourne to Sydney. Away from their wider families, in a city where they knew only five people, both working full-time with three young children, it was a challenging and stressful time.
“We’re still standing is all I can say,” Crock says. “I think chaos theory came into it. The children will tell you that they are all excellent cooks. And they will tell you ‘We learned everything we know from our nanny’.”
There was little time for their relationship. Their solution was what they call “48-hour holidays”. McCallum explains: “That’s all the time we had. [We’d say] ‘Let’s go somewhere for a day’. Or ‘Let’s go to a conference and sleep somewhere’.”
Common intellectual interests and working in the same field has its benefits. They often read and discuss each other’s academic work. “It’s a rare privilege to have somebody who can read everything that you write and make really good criticisms of it,” Crock says.
They don’t always agree. McCallum remembers teaching a joint class on labour law and migration, and after he’d made a point, Crock turned to the class and said she disagreed with everything he’d said. “I said ‘Could you please give the class reasons?’ And they were good reasons.” While they debate academic issues, they share a similar worldview. Says Crock: “There was some sympathy between the way that we thought when we met [and] it’s a world view that we very much developed together as well.”
In 1995, Crock also began lecturing at the faculty of law at the University of Sydney, working in the same building as McCallum. While it was “a godsend” in many ways, Crock was conscious her husband was the boss. “We’ve both had to make compromises, I think at different times … At the same time, I think I’ve felt over the years that I’ve had to make myself invisible as Ron became more and more senior.”
McCallum’s blindness has its own challenges. Crock says they made conscious decisions early on about the extent to which she helped him. “We have been careful to create boundaries so that I haven’t been his full time carer.”
Their physicality is part of their connection. “Touching is a very important part of a relationship,” McCallum says. “And I think it also can help when things can get a bit rocky … And I’m not meaning anything erotic, but it just can help. It’s almost like the oil can smooth [things] over.” Although she hesitates when he raises the topic, Crock agrees: “It‘s actually a good point to make because Ron’s dependent on me for his mobility a lot of the time [so] we do touch each other a lot more.” Advertisement
McCallum is quick to stress they’re far from perfect. “We do have our moments and we’ve had our disputes.” However, conflict has its place. “Showing your children conflict and resolving conflict is as important a life lesson as you can get,” Crock says. “Because it shows the children that you can still be your own person. And you can disagree with someone sometimes quite profoundly but still, at the end of the day, love them and continue the relationship.”
McCallum agrees: “I think the best thing we can give our children is [the sense] that we’ve had a reasonably good relationship that they’ve grown up in, and they’ve seen us in our underwear at one place. And they’ve seen us argue, and they’ve seen us in good times. And they know that we’re very committed, and committed to them.”
Commitment is what keeps them together. “It’s about reflecting on how your life is going to be and what you want to achieve together. Rather than just having personal goals, you end up having goals together,” Crock says. “And I think one of the important things for me is that it’s a relationship that involves creativity and fun.”
And, while shared interests are important, so too are individual activities: “We have also managed to leave each other to have a bit of personal space as well. Over the years, [Ron’s] pushed me to do a lot of things that have taken me out of my comfort zone. He’s also pushed me to do things that he knows that I’m passionate about that he can’t share in.” For Crock, that means painting – and she has her own space for this. “I have a shed” she says pointing to the garden. “That’s Mary’s shed out there.”
One advocated blowing them up with a grenade, another accused them of getting money for nothing while the disabled were accused of “faking it.”
In one disturbing taped conversation a manager says: “The police sometimes have sting operations where they gather people together.
“We should nominate one person to throw a grenade in.”
Another reveals a case manager railing at claimants, who can be out of work because of ill health.
They rant: “It does my head in. They’re getting something for nowt, they don’t really have to do a great deal to get it. And they still whinge.”
Another says they “have absolutely no time” for claimants with depression and anxiety.
A regular caller with four children, including one who is severely disabled, is branded a **** after a call.
One manager asks: “Has she got a disabled child?” before another says: “She’s not disabled. She acts it.”
Benefits charities were yesterday shocked at the tapes, passed to the Sunday Mirror by a whistleblower.
Jamie Grier, of benefits support charity Turn2us, said: “Stigmatising people experiencing a financial crisis is divisive and wrong.”
The Liberal Democrats’ Shadow Work and Pensions Secretary Tim Farron added: “This kind of language and behaviour is nothing short of heartless.
“The Conservatives have created a toxic environment stemming from social security cuts that have left thousands unable to afford the basics.”
Department for Work and Pensions Staff were recorded making the slurs working at a call centre in the Midlands.
They complained of juggling 700 cases each and said hated Universal Credit is a nightmare to grasp.
One confesses: “I don’t know what I’m doing half the bloody time.”
UC combines existing benefits to “simplify” them, but has been slammed after suicides following errors or withheld payments.
Our whistleblower said: “These people hold claimants with thinly-veiled contempt.
“They become so ground down by the scale of the job they give up being nice. I’ve seen them trying to outdo the other in all the mean things they say.”
The Sunday Mirror is not publishing the recordings to protect the anonymity of the whistleblower, who fears reprisals from the DWP if their identity is discovered.
The DWP said: “The Sunday Mirror has not provided us with the recording, or any further details. We are therefore at this stage unable to verify the provenance of this recording.
“We are however deeply concerned by the allegations, and are taking them seriously.
“We will urgently investigate this matter, so far as we can with the limited information we have.
“Where wrongdoing has been identified, we will take appropriate disciplinary action.”
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