John Kelly performing in Graeae’s production of Reasons To Be Cheerful. (Photo: Alison Baskerville)
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Back to basics: the government’s grim decision to kill off the Independent Living Fund for disabled people

Two years ago John Kelly, an artist and long-term wheelchair user, was singing at the Paralympics Opening Ceremony. Without the ILF this would never have been possible.

“My feelings are all over the place. Worry at not knowing what I’m likely to lose, not knowing or being able to try out what might go in its place to see if it works… not being involved in change that is about how I live my life. I worry about others, my loved ones, friends hoping I can maintain relationships and not have to rely more on them for help.”

It’s been a week since John Kelly heard that the government is going ahead with its closure of the Independent Living Fund – the standalone fund that helps him and 18,000 other people with severe disabilities to live in their own homes.

The Court of Appeal had quashed the government’s first attempt to do so, when five ILF users secured a widely celebrated victory in November. But despite the court ruling that the DWP had breached the Equality Act’s public-sector equality duty – finding that briefings given to the then disability minister Esther McVey by officials didn’t adequately make clear “the potentially very grave impact” the closure of the ILF could have on those using it – in fact, the judgment only meant the government had to reconsider its decision (this time paying “proper attention” to its legal obligations). Mike Penning, the current minister for disabled people, announced last week that this has now been done – and has simply moved the closure date for ILF back by three months to allow for time lost following the Court of Appeal judgment.

John, 44, has been relying on the support of ILF for over 20 years. He has a long-term joint impairment that means he uses a wheelchair. Like other ILF users, John needs help with aspects of day-to-day living: getting out of bed in the morning, going to the bathroom, getting something to eat.’

John Kelly performing at the Liberty Festival, Queen Elizabeth Olympic Park, 2013. (Photo: Sarah Murrison)

Before ILF, John tells me he relied on his mum for care and when she became ill with cancer, a care agency.

“It was very basic and a bit impersonal, run by the clock fitting all my needs into an hour here, an hour there,” he says. “The workers were lovely but often I wouldn’t know who was coming in [to my home] and obviously they didn't know much about me, where things were in my house, or how I did things.”

John describes ILF as “completing changing” his life. On top of the basic care costs his local council provides, ILF gives him 65 hours a week: allowing him to hire three to four personal assistants.

“I have choice and control over the basic but fundamental things”, he says. “I no longer have to fit my life into boxes and hourly care slots, I don’t have to worry as much about how long it takes me to shower or get dressed or go to the toilet.”

ILF means the basics of health and dignity: getting to the bathroom when you need it, having a hot meal, and living as an adult in your own home. It also means having the parts of life that can actually be defined as living: nipping to the shops, seeing friends, going to work.

John is an artist and has built a successful career working as a facilitator and musician. To the applause of David Cameron, two years ago he was singing Ian Dury’s 1981 song “Spasticus Austisticus” at the Paralympic Opening Ceremony as fellow performers waved placards for “Equality” and “Rights”. 

“I don't know what the future holds,” John tells me. “Not in the insecurities we all share, but… the basics. How many hours support I’ll have, will I have to decide between a shower and a meal because the care clock is ticking once again?”

“All because someone who doesn’t even know me has decided they know a better way for me to live independently,” he adds. “They consulted but the problem is they haven’t listened.”

 

John Kelly and the Graeae Theatre Company perform at Ronnie Scott's in London, 2011. (Photo: David Sinclair)

As John Pring noted on Disability News Service, when the Government consulted ILF users on its original decision to close the fund, the responses painted a chilling picture. “ILF allows me to do, as closely as possible, what normal human beings do. I do not do ‘activities’ or ‘access the community’ – I go out for a drive, for a picnic, to visit people, the kind of things ‘real’ people do,” described one respondent. “Before I was introduced to the ILF I was looked after by the local authority. I had no life at all, just a horrible existence. I didn’t get out of bed for months at a time. I was not encouraged to take part in life with the children. My care was extremely basic – to be kept clean, fed and medicated,” said another.

The closure of ILF means that people currently supported by it will, from 2015, be transferred to this local authority care provision. The money, crucially, won’t be ring-fenced – meaning local councils will have no obligation to spend it on current recipients. 

These are the same local councils that just last week have been found to be enduring such deep cuts that the UK is breaching the European charter of local self-government. Local authorities do “not have adequate financial resources” and this is likely to “get worse in years to come”, the Council of Europe said

“Local authority support for social care’s in crisis and things are going to get worse as central funding for local authorities is slashed,” Ellen Clifford, from Disabled People Against Cuts, the campaign who supported the legal challenge against ILF’s closure, tells me. “Social-care packages are ever diminishing, and increasingly stretched local authorities can’t fulfil the same outcomes as the ILF… We’ve seen [this already] with the impact on disabled people who missed out on ILF support following its closure to new applicants in December 2010.”

“Just today I attended a case conference with a disabled woman who has serious physical and mental health impairments and due to the fact that her needs are not being met [by her local authority] her children are being put on the ‘at risk’ register… Still with no forthcoming appropriate increase in support,” she says. “Disabled people's fundamental human rights are being infringed left right and centre by the increasing failings in local authority support.”

It was a year ago that Alan White and Kate Belgrave reported for the New Statesman that local authorities were already tightening care eligibility criteria so that they only fund people who have “substantial” or “critical” needs. The council facing a judicial review for capping care costs in a scheme where some disabled people were being told to find cheaper means of support such as receiving “their care in a residential or nursing home”. The woman who has cerebral palsy and is in the “substantial” needs band and has to stay in bed at the weekend, because her care hours don’t stretch to weekends. Research by the Financial Times this month declared there’s now a £20bn black hole in the public finances  – suggesting that even greater cuts will have to be made to social security and cash-strapped local government because other key areas of spending (such as the NHS and schools) are protected. Things are getting worse, not better.

As Kate put it: “Anyone who says councils will be able to finance these complex care packages [of ILF users] in this appalling funding environment, with these monumental care funding gaps, is either dreaming, or lying.”

Perhaps the worst thing is that this isn’t news to the Government. It knows exactly what closing the ILF will mean for the people relying on it. Just last week, its own analysis admitted that it’s “almost certain that closure of the ILF will mean that the majority of users will face changes to the way their support is delivered, including the real possibility of a reduction to the funding they currently receive”. [My italics] This could mean “the loss of a carer or personal assistant”, it adds.

I speak to John from the road, travelling from his flat in South London to the first date of his tour. He’s performing in The Threepenny Opera this month; enabled, as always, by the system of support he has built with ILF over years. “Imagine a world where evil goes unpunished and lowly souls remain on the poverty line,” the promotional blurb of the show reads. John suggests it seems fitting for the times we’re in.

“I’m worried about losing what I’ve worked so hard to achieve in order to manage my own life,” he tells me. “I’m fearful of enforced, rushed, ill-considered changes for political point scoring, fearful of the experiments with my life…”

“I’m angry [too],” he says. “We shouldn’t have to be fighting for such basic things in 2014, in the UK, in a civilised, democratic, ‘world leading’ country…. [But I will do. I’ll] fight for the same choice and control to be able to participate, contribute and live a full meaningful life.” 

John Kelly performing. (Photo: Patrick Baldwin)

The fight continues,” Ellen says. “We’re seeing… how local authority support is failing to meet the needs and rights of disabled people under the UN Convention on the Rights of Persons with Disabilities. The strength and resolve of grassroots disabled people got us this far and we’re not giving up now. This has never just been about protecting support for existing ILF recipients, however important that certainly is, but it’s also about the fundamental right to independent living for all disabled people.”

“I’m not fighting for more or extra, just for the same,” John tells me. “The only time usually a government or society takes these kinds of freedoms away are when we’ve broken the law and go to prison,” he adds. “And it isn’t me that’s robbed the bank.” 

Frances Ryan is a journalist and political researcher. She writes regularly for the Guardian, New Statesman, and others on disability, feminism, and most areas of equality you throw at her. She has a doctorate in inequality in education. Her website is here.

John Moore
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The man who created the fake Tube sign explains why he did it

"We need to consider the fact that fake news isn't always fake news at the source," says John Moore.

"I wrote that at 8 o'clock on the evening and before midday the next day it had been read out in the Houses of Parliament."

John Moore, a 44-year-old doctor from Windsor, is describing the whirlwind process by which his social media response to Wednesday's Westminster attack became national news.

Moore used a Tube-sign generator on the evening after the attack to create a sign on a TfL Service Announcement board that read: "All terrorists are politely reminded that THIS IS LONDON and whatever you do to us we will drink tea and jolly well carry on thank you." Within three hours, it had just fifty shares. By the morning, it had accumulated 200. Yet by the afternoon, over 30,000 people had shared Moore's post, which was then read aloud on BBC Radio 4 and called a "wonderful tribute" by prime minister Theresa May, who at the time believed it was a genuine Underground sign. 

"I think you have to be very mindful of how powerful the internet is," says Moore, whose viral post was quickly debunked by social media users and then national newspapers such as the Guardian and the Sun. On Thursday, the online world split into two camps: those spreading the word that the sign was "fake news" and urging people not to share it, and those who said that it didn't matter that it was fake - the sentiment was what was important. 

Moore agrees with the latter camp. "I never claimed it was a real tube sign, I never claimed that at all," he says. "In my opinion the only fake news about that sign is that it has been reported as fake news. It was literally just how I was feeling at the time."

Moore was motivated to create and post the sign when he was struck by the "very British response" to the Westminster attack. "There was no sort of knee-jerk Islamaphobia, there was no dramatisation, it was all pretty much, I thought, very calm reporting," he says. "So my initial thought at the time was just a bit of pride in how London had reacted really." Though he saw other, real Tube signs online, he wanted to create his own in order to create a tribute that specifically epitomised the "very London" response. 

Yet though Moore insists he never claimed the sign was real, his caption on the image - which now has 100,800 shares - is arguably misleading. "Quintessentially British..." Moore wrote on his Facebook post, and agrees now that this was ambiguous. "It was meant to relate to the reaction that I saw in London in that day which I just thought was very calm and measured. What the sign was trying to do was capture the spirit I'd seen, so that's what I was actually talking about."

Not only did Moore not mean to mislead, he is actually shocked that anyone thought the sign was real. 

"I'm reasonably digitally savvy and I was extremely shocked that anyone thought it was real," he says, explaining that he thought everyone would be able to spot a fake after a "You ain't no muslim bruv" sign went viral after the Leytonstone Tube attack in 2015. "I thought this is an internet meme that people know isn't true and it's fine to do because this is a digital thing in a digital world."

Yet despite his intentions, Moore's sign has become the centre of debate about whether "nice" fake news is as problematic as that which was notoriously spread during the 2016 United States Presidential elections. Though Moore can understand this perspective, he ultimately feels as though the sentiment behind the sign makes it acceptable. 

"I use the word fake in inverted commas because I think fake implies the intention to deceive and there wasn't [any]... I think if the sentiment is ok then I think it is ok. I think if you were trying to be divisive and you were trying to stir up controversy or influence people's behaviour then perhaps I wouldn't have chosen that forum but I think when you're only expressing your own emotion, I think it's ok.

"The fact that it became so-called fake news was down to other people's interpretation and not down to the actual intention... So in many interesting ways you can see that fake news doesn't even have to originate from the source of the news."

Though Moore was initially "extremely shocked" at the reponse to his post, he says that on reflection he is "pretty proud". 

"I'm glad that other people, even the powers that be, found it an appropriate phrase to use," he says. "I also think social media is often denigrated as a source of evil and bad things in the world, but on occasion I think it can be used for very positive things. I think the vast majority of people who shared my post and liked my post have actually found the phrase and the sentiment useful to them, so I think we have to give social media a fair judgement at times and respect the fact it can be a source for good."

Amelia Tait is a technology and digital culture writer at the New Statesman.