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.

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France is changing: an army stalks the streets and Boris Johnson wanders the Tuileries

Will Self on the militarisation of France, and Boris Johnson at the Foreign Office.

At the corner of the rue D’Hauteville and the rue de Paradis in the tenth arrondissement of Paris is a retro-video-games-themed bar, Le Fantôme, which is frequented by some not-so-jeunes gens – the kind of thirtysomethings nostalgic for an era when you had to go to an actual place if you wanted to enter virtual space. They sit placidly behind the plate-glass windows zapping Pac-Men and Space Invaders, while outside another – and rather more lethal – sort of phantom stalks the sunlit streets.

I often go to Paris for work, and so have been able to register the incremental militarisation of its streets since President Hollande first declared a state of emergency after last November’s terrorist attacks. In general the French seem more comfortable about this prêt-à-porter khaki than we’d probably be; the army-nation concept is, after all, encrypted deep in their collective psyche. The army was constituted as a revolutionary instrument. France was the first modern nation to introduce universal male conscription – and it continued in one form or another right up until the mid-1990s.

Even so, it was surprising to witness the sang-froid with which Parisians regarded the camouflaged phantoms wandering among them: a patrol numbering eight ­infantrymen and women moved up the roadway, scoping out doorways, nosing into passages – but when one peered into Le Fantôme, his assault rifle levelled, none of the boozing gamers paid the least attention. I witnessed this scene the Saturday after Mohamed Lahouaiej-Bouhlel ran amok on the Promenade des Anglais in Nice – it was a little preview of the new state of emergency.

On Monday 18 July the French premier, Manuel Valls, was booed at a memorial service for the victims of the Nice attacks – while Marine Le Pen has been making all the populist running, whipping up anxieties about the enemy within. For many French, the events of the past week – including the failed Turkish coup – are steps along the way limned by Michel Houellebecq in his bestselling novel Submission; a via dolorosa that ends with La Marianne wearing the hijab and France itself annexed by a new caliphate.

Into this febrile drama comes a new player: Boris Johnson, the British Foreign Secretary. What can we expect from this freshly minted statesman when it comes to our relations with our closest neighbour? There is no doubt that Johnson is a Francophile – I’ve run into him and his family at the Tuileries, and he made much of his own francophone status during the referendum campaign. In Paris last winter to launch the French edition of his Churchill biography, Johnson wowed a publication dinner by speaking French for the entire evening. He was sufficiently fluent to bumble, waffle and generally avoid saying anything serious at all.

Last Sunday I attended the Lambeth Country Show, an oxymoronic event for which the diverse inhabitants of my home borough gather in Brockwell Park, south London, for jerked and halal chicken, funfair rides, Quidditch-watching, and “country-style” activities, such as looking at farm animals and buying their products. Wandering among ancient Rastafarians with huge shocks of dreadlocks, British Muslims wearing immaculate white kurtas blazoned with “ASK ME ABOUT ISLAM” and crusty old Brixton punks, I found it quite impossible to rid my mind of the Nice carnage – or stop wondering how they would react if armed soldiers were patrolling, instead of tit-helmeted, emphatically unarmed police.

I stepped into the Royal Horticultural Society marquee, and there they were: the entire cast of our end-of-the-pier-show politics, in vegetable-sculpture form and arrayed for judging. There was Jeremy Corbyn (or “Cornbin”) made out of corncobs – and Boris Johnson in the form of a beetroot, being stabbed in the back by a beetroot Michael Gove. And over there was Johnson again, this time rendered in cabbage. The veggie politicians were the big draw, Brixtonians standing six-deep around them, iPhones aloft.

The animal (as opposed to the vegetable) Johnson has begun his diplomatic rounds this week, his first démarches as tasteless and anodyne as cucumber. No British abandonment of friends after Brexit . . . Coordinated response to terror threat . . . Call for Erdogan to be restrained in response to failed coup . . . Blah-blah, whiff-whaff-waffle . . . Even someone as gaffe-prone as he can manage these simple lines, but I very much doubt he will be able to produce rhetorical flourishes as powerful as his hero’s. In The Churchill Factor: How One Man Made History, Johnson writes of Winnie overcoming “his stammer and his depression and his ­appalling father to become the greatest living Englishman”. Well, I’ve no idea if Bojo suffers from depression now but he soon will if he cleaves to this role model. His Churchill-worship (like so many others’) hinges on his belief that, without Churchill as war leader, Britain would have been ground beneath the Nazi jackboot. It may well be that, with his contribution to the Brexit campaign, Johnson now feels he, too, has wrested our national destiny from the slavering jaws of contingency.

Of course the differences between the two politicians are far more significant: Johnson’s genius – such as it is – lies in his intuitive understanding that politics, in our intensely mediatised and entirely commoditised era, is best conceived of as a series of spectacles or stunts: nowadays you can fool most of the people, most of the time. This is not a view you can imagine associating with Churchill, who, when his Gallipoli stratagem went disastrously wrong, exiled himself, rifle in hand, to the trenches. No, the French people Johnson both resembles and has an affinity for are the ones caught up in the virtual reality of Le Fantôme – rather than those patrolling the real and increasingly mean streets without. 

Will Self is an author and journalist. His books include Umbrella, Shark, The Book of Dave and The Butt. He writes the Madness of Crowds and Real Meals columns for the New Statesman.

This article first appeared in the 21 July 2016 issue of the New Statesman, The English Revolt