Benefits cuts: are you about to lose a Motability car, scooter or wheelchair? | Frances Ryan

Up to 500 Motability vehicles are now being removed from people each week in the UK due to personal independence payments (PIP) cuts, according to research by Muscular Dystrophy UK. The number of disabled people now affected by the new benefit rules has climbed to 51,000.

The Guardian is continuing a video investigation into the impact of cuts on disabled people and is looking for people to tell their story. As part of this, we’re looking to speak to people who have recently been told they will lose their Motability car, scooter, or wheelchair (and have not already returned their vehicle).

How will losing your vehicle affect you? Do you worry you’ll struggle to leave your home and get to work or medical appointments, or to socialise? Share your experience below.

Benefits cuts: are you about to lose a Motability car, scooter or wheelchair? | Frances Ryan

Whether to have a Down’s syndrome baby – it’s not black and white | Frances Ryan

There’s a scene in BBC2’s A World Without Down’s Syndrome?, which airs tonight, in which Sally Phillips, Bridget Jones’ Diary actor and mother of a son with Down’s, shows a video of a disabled girl competing at a gymnastics competition to a woman who chose to end her own pregnancy. The interaction isn’t designed to guilt the woman who made a different decision – Phillips is an empathetic presenter and describes herself as pro-choice – but it is a snapshot of how the conversation around disability and abortion is routinely set up: one woman’s choice versus another’s.

We see this in articles praising women who choose to have their child despite the fact a foetal abnormality has been detected, often asking other female readers: what would you do? Or the tone of news items in which women express doubts or fears about raising a disabled child. Katie Price was described as having “confessed”when she said she probably would have had an abortion if she’d known her son Harvey was going to be severely disabled, as if the thought, let alone the act, was a heinous crime.

On the other hand, I’ve seen women with disabled children – and disabled people themselves – be asked incredulously (often by complete strangers) why an abortion wasn’t chosen. Such attitudes are particularly alarming in a climate where disabled people are increasingly perceived as a costly burden to the state.

When it comes to disability and pregnancy, we are routinely stuck in this sort of black-and-white dichotomy: having a disabled child is said to be a tragedy or inconvenience that should always be avoided, while women who do choose to abort a foetus with abnormalities are vilified as “shallow” and “selfish”. Neither is accurate nor addresses the issues that really matter.

The truth is there is still considerable prejudice around disability. We live in a culture where disabled people’s lives are often said to be worth less, and difference is equated with failure or negativity. Even Paralympians are described in some media reports as “suffering” from their disability. It’s not alarmist to accept that the way as a society we understand disability can directly impact on how individuals feel about bringing up a disabled child.

Medical professionals – the very people pregnant women rely on – are not exempt from spreading such attitudes. Phillips has spoken of the way that, after her son was born with Down’s, her doctor broke the “bad news” and the nurse cried. (Her child’s disability wasn’t detected during pregnancy.)As the NHS looks set to introduce a more effective screening for Down’s syndrome, it’s a valid moment to question how we view disability as a society, and to accept that women, and of course men, deserve accurate information in order to make an informed decision.

But in doing so, we should be vigilant of how quickly this conversation can be derailed. It is an ongoing strategy of anti-choice groups to hijack disability, generally as a way to reduce women’s reproductive rights. This sort of faux concern tends to be less about disabled people’s equality and more about women’s inequality. (And though we’re often cut out from the discussion, disabled women can be the ones who are pregnant.) Days before Phillips’ documentary was even set to air, the Mail used it as an opportunity to run an article claiming women “are being pressured to abort babies” with Down’s.

And yet anti-choice campaigners and media organisations who purport to wish to “protect” disabled foetuses tend to be very quiet – or in the Mail’s case, very vocal – about the support disabled people should receive once they are out of the womb. Raising a child with a severe disability can be exhausting and difficult, as well as wonderful, and this is much harder when the state cuts play centres for disabled children, respite care and transport. Phillips herself admits she was lucky to be able to afford to hire a live-in nanny to help with her disabled child, an advantage women on low incomes struggling alone can only imagine.

And we need to talk about that too, if we are going to really have this discussion. We need to admit that things such as economic and gender inequality, as well as perceptions of disability, impact on our supposedly free choices. And we need to argue for positive change, such as more government support for disabled children (and adults), and more inclusion of disabled people in all parts of society.

As we all know, life, let alone disability or raising children, is not black and white but rather filled with multiple shades of grey. I hope Phillips’ documentary starts a long overdue and nuanced conversation. Both women and disabled people deserve better than simplistic judgments.

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Whether to have a Down’s syndrome baby – it’s not black and white | Frances Ryan

Junior was a London Paralympics Games Maker. Don’t talk to him about ‘legacy’ | Frances Ryan

Exactly four years ago, surrounded by placards saying “Equality” and “Rights”, Junior Sterling was performing to millions of people in London’s Paralympic opening ceremony. But despite all the talk of the Games’ legacy for disabled people in Britain, the 55-year-old, who was born with a muscle-wasting disease and club foot, has been left to live in a kitchen covered in mould and with a bucket for his bathroom.

In his one-bed council flat in Shepherd’s Bush, west London, Junior talks avidly about London’s Paralympics in 2012. He was a volunteer Games Maker, working as a steward at the wheelchair tennis, and part of the famed “Spasticus Autisticus!” segment of the opening ceremony. In the run-up to the Games, Junior even had his photo taken with Sebastian Coe after creating a sign spelling out 2012 in braille. What no one realised, however, was that after spending his day around Paralympians, as Junior puts it to me: “I’d go back to my home infested with bugs.”

Junior has been in this flat for 20 years; his first home after eight years of, in his words, “living in cardboard boxes” on London’s streets. The flat is on the top floor of the block, up three flights of steps and there’s no lift, which isn’t ideal for someone who struggles to walk. But Junior took the flat, afraid that if he didn’t he’d be sent to the bottom of the council’s housing list.

‘The toilet in his bathroom flushes but because of the damp and the smell, he’s afraid to go in there.’

The problems inside the flat started several years later, in 2002. At first it was a simple problem with his shower. By the time of London 2012, the plumbing had got so bad through the whole flat it had flooded Junior’s downstairs neighbour causing their shower tiles fall off. Filter flies, drawn to drains and sewage, contaminated his bathroom.

Since then, little has changed. In fact, it’s got worse. As of this summer, Junior has been without a working bathroom or kitchen for five years. The shower is disconnected and the bath has a panel missing. Damp and mould cover the ceiling and walls. The housing association responsible for the accommodation, Peabody Trust, got rid of the fly infestation but the stench remains, Junior says. The kitchen sink is still bust; Junior’s been told by the manager of his housing block not to use it (water leaks down the walls of the neighbour beneath him).

The effects of the damp then spread into the front room. The carpet is cut up – a scrap left in the middle of the floor – and a loaf of bread, tinned milk, tuna, and corn flour are stacked on the furniture. The water and mould in the kitchen means Junior has to keep the food where he sits, but flies are attracted to it, especially when it’s hot.

Junior has contacted Peabody housing association repeatedly over the years – he shows me a journal he’s kept of it all, 10 pages going back over a decade – but says he’s barely heard a whisper back. Still, they keep collecting the rent: £129 per week, paid straight from Junior’s council. He says when he does hear back from them, Peabody claims it’s not been able to get in touch with him. “They make so much money, but this? They can’t sort this.”

‘With no working shower, if he wants a shave, he gets water from a hose.’

A Peabody spokesman offered to put the wheels in motion to sort the problems out, stating that the team had already tried to resolve them, but that the last contact they had with Junior was in March 2015. “Prior to that we worked extensively with the council and our contractors to draw up a specification of works. These were unable to be completed as the contractor was repeatedly refused entry by the tenant,” he added. “Mr Sterling has declined to deal with us directly, insisting that all communication went through his solicitor. If Mr Sterling would like our contractor to make fresh inspections and carry out repairs, he will need to get in touch and let them into the home.”

Junior says someone from Peabody​ came to take pictures of his flat but he is unaware of anyone trying to the carry out the necessary work. He had a solicitor to help him for three years, but without legal aid he was unable to take the case to court. In the meantime, he can barely keep clean. The toilet in his bathroom flushes but because of the damp and the smell, he’s afraid to go in there. Instead, a toilet for Junior is now “a bag and a box”. With no working shower, if he wants a shave, he gets water from a hose outside the flat. Two buckets for when he needs a wash.

Because of the kitchen leak, it’s the same routine each time he has a hot drink. “If I want tea or coffee, I have to fill up a water bottle,” he says. “Go down [to the hose]. Fill it up with water. And then do it again.”

Anyone’s health would get worse from living like this, but when you’re disabled, it’s devastating. Junior’s two stone lighter now (“I can’t eat in the flat”) and the mould gives him recurring chest infections. Not being able to shower or bathe for years has led to him losing his hair through dry skin, and his feet – already vulnerable – are now covered in callouses.

Junior still has his London 2012 Paralympic band around his wrist. “I can’t tell you the tears I’ve cried,” he says. “I may as well be homeless again.”

Junior was a London Paralympics Games Maker. Don’t talk to him about ‘legacy’ | Frances Ryan

Disabled youngsters are very easily misplaced in a welfare state cut to the bone | Frances Ryan

Against the backdrop of this month’s jubilant A-level and GCSE final results, 17-year-previous Sanjeev Singh gives a various image of what it is to be younger in Conservative Britain.

In several methods, Sanjeev is a younger individual “doing the right thing”. He lives at house with his mum and 3 siblings and, because leaving school a year in the past, he has persisted in seeking for function. But Sanjeev, 17, is deaf and as soon as prospective employers know he has a disability, they really don’t get in touch with him once more. He keeps making an attempt to get interviews but, unable to travel securely alone on public transport, he has no way of receiving to them.

This is where the welfare state’s security net is meant to kick in. Disability living allowance (DLA), for instance – a benefit Sanjeev has obtained since he was 6 years previous – could pay for a taxi on the days he demands get to an interview and has no one to support him communicate with the crowds on a bus. But the government chose to change DLA with personal independence payment (PIP) and following currently being tested for the new, tougher evaluation in December, Sanjeev had his advantages stopped, soon after much more than a decade

Related: We must assist the disabled men and women dealing with imprisonment at property | Frances Ryan

Even unemployment advantage is out of his attain. There is no specific entitlement for jobseeker’s allowance for anybody below 18, in accordance to the Division for Operate and Pensions (DWP). As an alternative, it is left to regional jobcentres to arbitrarily judge if an individual is in “hardship”. Neither is Sanjeev eligible for the disability “unfit for work” benefit, employment and help allowance (ESA). As a DWP spokesperson confirmed to me this week, that advantage is only available to beneath-18s if they have not only left school but also are residing “independently”. So a teenager coping with chronic sickness or disability is expected to move out of their loved ones residence ahead of the government will take into account them for unemployment help.

Perversely, as a younger disabled jobseeker, Sanjeev has no way of knowing if he is even classed as “fit for work”. He can’t be assessed for ESA right up until he is 18 but in the meantime, have to commit yet another 12 months attempting to uncover a job no employer so far desires to give him.

This is unwinnable Britain. Where you can be outdated enough to have left college but be classed as too youthful for out-of-operate rewards. Where you can have a disability that stops you acquiring to a task interview but are not disabled sufficient to get living allowance.

What is occurring to Sanjeev sits within a wider landscape of the state’s abandonment of youthful individuals: housing benefit cuts for beneath-21s, unemployed 18- to 21-12 months-olds to be sent on instruction “bootcamps”, and the servicing grants for students from bad backgrounds abolished. Each and every policy is based mostly on the exact same assumption that each mother or father can afford to feed, clothe and residence their children into adulthood.

Latest government ideas to eliminate 18- to 22-12 months-olds’ in-perform rewards – that is tax credits to youngster advantage – will only hit disabled younger individuals and youthful dad and mom (any other below 25-12 months-outdated is not eligible). As Sam Royston, policy director at the Children’s Society, put it to me: remove assist this kind of as tax credits, and youthful disabled men and women who are moving into adulthood and needing added help will locate it significantly more difficult to get into function and to reside independently. It factors to how far fears of so-referred to as “welfare dependency” are detached from actuality. The advantage technique is not a crutch of dependency but – for any person born outside of the protection of income – often the launchpad to independence. To stamp out younger people’s housing, wages, training, unemployment, and disability assistance is to lock a entire generation – bar the wealthy – into stagnated opportunity, low incomes, and insecure work.

Sanjeev tells me he’s going to maintain hunting for function even though beginning the appeal approach to try out and get his disability advantage back. He asks if I know how to fill out the types. “I’m not receiving any assist,” he explains. “I’ll need to have to tell my mum to ring them.”

Disabled teenagers are easily lost in a welfare state lower to the bone. To be younger whilst bad or disabled is more and more to view your existence chances be pulled away.

Disabled youngsters are very easily misplaced in a welfare state cut to the bone | Frances Ryan

My son died in an NHS residential unit. Every day I wake to the discomfort | Sara Ryan

Connor Sparrowhawk drowned in the bath at Slade Home assessment unit in July 2013. Photograph: Sara Ryan

If LB (Connor’s nickname was Laughing Boy) hadn’t been understanding disabled, his death would have provoked instantaneous outrage and engagement. We’ve lost count of how many “atrocity stories” considering that LB died have been headline news. We’ve fought like fucking billy-o to get accountability. We managed to get an independent investigation into his death commissioned and, with a battle, published. A report that categorically states that LB need to not have died.

LB must not have drowned in a bath in a hospital. In a unit with four “professional” employees and 5 sufferers. He was diagnosed with epilepsy. He had documented escalating seizure activity as a consequence of the medication adjust imposed by the clinician accountable for him. It was recorded that he was sensitive to medication modify. We told them he was getting seizures when he was in there. Information they chose to dispute.

Why would you dispute seizure exercise in somebody diagnosed with epilepsy, delicate to medicine change, when their family flag up seizure exercise? In which in the fucking curriculum/on the work knowledge does stamping out any sniff of a acknowledged danger feature?

At the very least the appropriate bodies have to have collectively swooped in and sorted issues out. A young man drowning in the bath in a specialist unit? Blimey. At least they must have supported the loved ones in every single way feasible. The a variety of bodies should have chucked in almost everything possible to ease the intense ache this family members have skilled. Yeah.

If LB hadn’t died, the same past-shite provision would be in place. No a single (other than the constantly and successfully sidelined, excluded and silenced households) would be any the wiser. Our son died. Each and every single day I go to bed considering about this. Every single day I wake to the soreness of remembering it. A continuous ache that varies from sheer agony to a boring ache of extreme sadness (on a “very good” day).

In amid the good assistance for #justiceforLB on Twitter, a clinician got embroiled in a protracted debate close to mortality and studying disabled individuals. Doc Anon’s level seemed to be that studying disabled individuals die earlier anyway. If you anticipate particular “types” of men and women not to reside as long as other, a lot more valued, “mainstream” individuals, it gets simpler to sweep the former beneath the “let us not bother with” carpet.

And our dude (along with probably countless other folks) was swept into this room final July.

These are edited extracts from Sara Ryan’s mydaftlife weblog

My son died in an NHS residential unit. Every day I wake to the discomfort | Sara Ryan