Beyond basket weaving?

Like the Paralympics, Remploy – the oldest and the biggest employer of disabled people in the country – was established after World War II to provide employment for injured soldiers, and it has continued to do so since the announcement of factory closures earlier this year. David Floyd, an advocate of the social enterprise model that Remploy were belatedly piloting, supports the government’s decision to close these state-subsidised and segregated workplaces as recommended in the Sayce Review.

Liz Sayce, chief executive of Disability Rights UK, was charged with establishing ‘how the government could better support more disabled people to get into mainstream employment’. As Floyd argues, the response of trade unions that ‘disabled people are vulnerable and need looking after by the state’ is patronising and wrong. The view of those opposing the closures seems to be that Remploy is the best people with disabilities can expect; that they are vulnerable dependents who need protecting. As a spokesman for Unite put it during a recent strike by Remploy workers: ‘To attack the most vulnerable in our society and throw them on the scrapheap is an act against disabled people‘. But what is the alternative?

‘Sit-down comic’ Laurence Clark is torn. He turned down a gig at a Remploy factory once. It reminded him of a visit his special school organised to a nearby sheltered workshop to see ‘older peers packing disposable nappies into bags and other mundane chores’. For Clark, ‘even as a child, I expected a bit more out of life than this’. His career advisor suggested IT but this only confirmed that ‘computing had become the new basket weaving’. But it is the ‘attitudes and inflexibility of employers’ and the threat of removing ‘essential support’ provided by the state that is most problematic. Still, says Clark, Sayce is right to conclude that Remploy is expensive and outdated, representing a poor use of resources that might more effectively be used to support disabled people into mainstream work.

Sayce calculated that the state subsidy to Remploy is £25,000 per worker compared with the government’s Access to Work scheme costing just £2,900 with the prospect of a more integrated and independent working life. The government is committed, said Maria Miller then minister for disabled people, to finding a better way to spend the £320 million that goes to supporting people with disabilities (currently a fifth on Remploy alone) into employment every year. Access to Work, costing £100m a year to run – including support with ‘interpreters, special technology and office adaptations’ – and similar schemes; are a better way of doing this, she says, because they support individuals to access the same workplaces as everybody else.

Miller, before she was moved in yesterday’s reshuffle, had promised an additional £15m to help get a further 8,000 disabled people into work. So it would seem that the government is actually moving in the right direction. However, while this simultaneous broadening and personalising of the support relationship should be welcomed, other initiatives are more problematic. This is something I will explore in my next post.

Unsure about disability? Lets debate.

In a challenging piece earlier this year Kaliya Franklin – disability rights activist, founder of the Broken of Britain campaign against welfare cuts, and co-author of the Responsible Reform (Spartacus) Report – called for more frank and open discussion about disabled people at work. Or is that people with disabilities? She says that most of us don’t get to air what we really think about disability for fear of causing offence. We daren’t vocalise un-PC thoughts such as

… isn’t it nice the poor dears have something to do with their time. And get paid for it too. Bless. Not like those damn scroungers defrauding benefits.

Franklin (or @bendygirl as she calls herself on Twitter) was writing the day after it was announced that more than 1,500 disabled workers would be made redundant from state-subsidised Remploy factories.

I think she underestimates us, the able-bodied majority, who are after all currently enjoying what is already being billed as the most successful Paralympic Games ever. But I think her dim view of what she thinks we think is a consequence of a lack of debate about the issue. She’s no doubt right that few of us are comfortable discussing disability for this very reason. But we’re not the only ones made uncomfortable. Disability rights activists like her, Franklin admits, are also made uneasy by the awkward reality that segregated workplaces – a subject I’ll return to in my next post – have long provided gainful employment for a group of people still not fully integrated into the world of work. All the more reason to have an honest and open discussion rather than be stifled by the sanitised ‘you can’t say that’ culture that Franklin is so critical of, and that the Frankie Boyle’s of this world so love to exploit.

There are important questions that are not even being asked never mind answered, she says:

Maybe ‘they’ll’ be a bit smelly? Maybe some will dribble a bit, or have issues with their speech. What will happen if they aren’t very good at their job but fear of accusations of discrimination prevents colleagues or managers from raising performance issues?

These are not in themselves unreasonable concerns. The trouble is that in a society where people – not least campaigners themselves – are too easily offended and usually on somebody else’s behalf, it can be difficult to enter into an honest debate about disability. Despite this we will be doing just that at the Manchester Salon on the evening of 18 September. I hope you’ll join us!

The disabled: the hardest hit?

As the Paralympics gets under way, I will be asking whether the disability rights movement can live up to the Paralympic spirit? Because It seems to me that far from encouraging people with disabilities to overcome the disadvantages they face, it has increasingly become little more than a variant of today’s stifling politics of pity. While there is much to complain about today, there is no problem so big that it can’t be made worse by the imperatives of competitive victimhood. There are no end of people claiming to be very badly done by, or should I say no end of campaigners and commentators claiming to speak on their behalf.

Whether its as victims of public sector cuts or the apparent excesses of capitalism, some are seemingly little more than the objects of other’s pity. This is particularly the case if you happen to have a disability. According to Brendan Barber, general secretary of the TUC: ‘No group of people is more affected by the government’s savage, ideological austerity than disabled workers.’ But it is not austerity that represents the biggest assault on people with disabilities. Rather it is the way that disabled people are portrayed by Barber and others that is most troubling of all. Not least by their supposed defenders. From the cuts to welfare to the closure of Remploy factories it is the disabled, we are told, who are the most pitiable. A high profile campaign organised by the Disability Benefits Consortium and the UK Disabled People’s Council leaves us in no doubt that they are The Hardest Hit.

Like I say, there is much to complain about. As Claudia Wood writes for Demos: ‘Disabled people are disproportionately reliant both on welfare benefits and public services’. Not only are 3.5 million people currently claiming cut-threatened disability-related benefits, Wood reminds us, many are also seeing the care services they rely on threatened by 28% cuts to local authority budgets. So the last thing I want to do is diminish the difficulties that people with disabilities are facing now more than ever. Quite the opposite. I will try to show over a series of blog posts here and in the Huffington Post, that it is only by challenging the diminishing of disabled people themselves, that the assault on their standard of living and on the quality of care they receive can be challenged.

On Autism: Who Are They Fooling?

First published in Huffington Post

I attended Autism, Ethics and the Good Lifeon World Autism Day. It was the day after April Fools Day. On hearing some of the stranger arguments put forward by speakers I was tempted to check my diary.

Dr Tim Cadman, at Institute of Psychiatry, King’s College London, explained to the uninitiated that while some understand autism as a disorder, others – particularly proponents of the social model and members of the ‘autistic community’ – understand it less as a condition to be treated than as a ‘distinct cognitive style’. One rather articulate speaker, K Leneh Buckle, who was severely disabled, mute and incommunicative as a child, thought she had since ‘lost something very special’. Professor Stuart Murray at the Centre for Medical Humanities at University of Leeds spoke disparagingly of the ‘narrative of diagnosis’ around autism.

This peculiar lauding of autism as a good thing, and the concomitant problematising of those who see it as a condition to be treated, was a recurrent theme. This is foolish. Not least because a diagnosis in any meaningful sense is a long way off. We heard how people are ‘diagnosed’ as a means to an end, as a way of accessing the support they need. Professor Francesca Happe, a colleague of Cadman’s, explained that it is only when a person’s ‘autistic-like traits are causing them significant difficulties’ that a diagnosis results. But this imprecision (autistic-like?) – not to mention the understandable opportunism of desperate parents – far from being worried over was instead celebrated by speakers and delegates alike.

Happe was surely right to note that the various behaviours ‘on the spectrum’ are as alike as apples and oranges. It might be better to talk of autisms rather than autism, she said. But I don’t see how this would get us any further if we don’t have a singularly reliable definition to begin with. From the severely autistic child, unable to speak or make eye contact, prone to hand-flapping and unable to make themselves understood; to the highly gifted if ‘odd’ and socially awkward individual with a neglected talent – there is much to differentiate those declared autistic, but little it seems to justify their belonging to a spectrum.

What was remarkable, though, was that despite an apparent consensus that talk of a spectrum is wrong-headed, this was not on account of it being too broad. Apparently it isn’t broad enough. Rather than arguing that there needs to be greater clarity about the condition, the better to ground medical interventions and treat it, there was if anything a desire for a further blurring of what autism is. We are all autistic in one way or another. The logic is perverse but in the absence of a medical explanation of what causes it (whatever ‘it’ is); autism is pretty much whatever you want it to be. For good and for bad.

Happe described a ‘triad of impairments’ typically associated with autism – social impairments, communication impairments and rigid or repetitive behaviour. The last of which seems to cause the most difficulty when it comes to defining autism. In what way are the ‘obsessional’ pursuits of those with a keen interest in maths or astronomy distinguishable from people with a definable condition in need of treatment? People living such intense or rarefied existences can be rather unusual shall we say. Does that make them autistic? I can’t have been the only person in the room self-diagnosing.

I’m bookish, a bit of a loner, have what Happe described as an ‘eye for detail’, and routinely offend against the emotionally correct dictates of our let it all hang out culture. Maybe I too am ‘on the spectrum’?! Or maybe what was once regarded as quite normal is today stigmatised, the sorts of traits once understood as part of the diversity of human flourishing, as characteristics to be admired, are now seen as undesirable, a problem or beyond all but the weirdest of individuals who, for whatever reason, stand apart from the rest of us? While not wanting anything to do with the autism as identity crowd, perhaps we do have a problem when it comes to the narrowing of what it means to be human.

So while Murray’s relentless relativising of autism grated, I was rather taken with his critique of the reductionist and deterministic narratives associated with the condition. Not least the use of brain imaging to suggest autism can be found in particular regions of the cerebral cortex; or bad reportage describing ‘lone wolves’ bent on terrorist acts as autistic. He could have gone further though. While Murray was right to make the comparison with long-since discredited 19th Century phrenology, ‘brain science’ – it’s 21st Century and no less spurious equivalent – is all the rage right now. Just read the ‘research’ conducted by the Iain Duncan Smith-founded Centre for Social Justice or Matthew Taylor’s Royal Society of Arts.

The truth is that both the discrediting of pseudoscience and the humanising of autism, require a hard-headed approach to what we objectively know and a fuller account of what human beings are made of. In this regard, Sandy Starr of the Progress Educational Trust was surely right. He told us that having something wrong with your health isn’t the same as having something wrong with you as a person.

The difficulty with autism, he said, is its ‘profound effect on people’s sociality’. It impinges on one’s sense of self so fundamentally that it is inseparable from it. That doesn’t make it desirable or in any way constitutive of a person’s identity as the likes of Buckle claim. An autistic man in the audience declared himself pleased to be free of the everyday anxieties most people experience. ‘I hardly feel anything’ he said. Rather sadly, I thought. Even if he didn’t know it himself he is missing out on something that his condition denies him. I for one would rather be anxious.

Disabled by Society?

First published in Huffington Post

I’ll be going to the Paralympics in London this summer. I’m really looking forward to it but, if I’m honest, this is as much to do with the fact that I couldn’t get a ticket for the ‘proper’ Olympics. And, if my reading of a poll conducted by the charity Scope is anything to go by, I’m not alone. Only a minority of respondents, disabled people and their carers, could build up any enthusiasm for the games. Most didn’t feel excited, or included or expected to feel ’empowered’ as a result. They weren’t convinced that the games would have any impact on participation in sport for disabled people, still less on improvements in transport or access to the workplace. Not even on changing people’s attitudes to the disabled, a particular focus of campaigners.

Two thirds say they have ‘experienced aggression, hostility or name calling’. Nearly half of respondents said attitudes towards them had worsened, and that they experienced discrimination. A majority said that people didn’t believe they were really disabled, or assumed they didn’t work. Scope argue that the 2012 Paralympics will help change attitudes and ‘play a positive role in raising the profile of disabled people’, a sentiment echoed by Chris Holmes, LOCOG Director of Paralympic Integration. The games might encourage the able-bodied to engage with the disabled and not worry so much about saying ‘the wrong thing’ he says. Holmes anticipates a ‘step-change in attitudes towards and opportunities for disabled people’.

So are some people still disabled by society? Do they face increasing levels of discrimination? If so, why? Has society become more hostile, as some claim, or are we just more sensitive about the words people use? Are the disabled, like other ‘vulnerable’ groups, unfairly portrayed as helpless and dependent? There was a time when the disability rights movement fought for equality with the able-bodied. People weren’t disabled by their bodies but by the way society and the urban environment was constructed, said campaigners. This go-getting and often radical movement contrasts with a very different view of being disabled today. Disability campaigners have sought not for access to the workplace, but for the continuation of benefits threatened by welfare reforms; not for the right of disabled people to have their say, or participate more fully in public life, but for the censorship of hurtful comments (especially so-called ‘hate crime’) in the street and comedians (i.e. Ricky Gervais) on Twitter.

Have things really got worse for people with disabilities? Levels of poverty among the disabled would certainly suggest that a much more generous settlement should be demanded. The standard of living of the disabled should not be further undermined by the austerity measures of the coalition government. The existence of institutional abuse revealed in recent scandals, points to the shocking treatment some disabled people still face. But this is very much the exception today. On the whole disabled people aren’t ‘locked away from society’ as Tanni-Grey Thompson, former Paralympic athlete and a member of the House of Lords, recalls from her youth.

Still, there are barriers to disabled people participating more fully and reaching their potential. The welfare system, says Thompson, is about having to ‘prove what you can’t do to get support and actually for me it should be about what support you need to be able to do things, so you can get a job, you can contribute, and you can pay tax, and you can be in society in a different way’. Whatever your views on welfare reform – indeed those in favour of the reforms would no doubt say they agree with Thompson – or on whether or not Gervais’ use of the word ‘mong’ is funny, there is a problem if disabled people are increasingly understood as vulnerable creatures. What is most troubling of all today, when so many gains have been made, is that it is hard to escape the view of disabled people as dependent on the state and tormented by abuse, not least because it is one reinforced by campaigners themselves. A view that I hope to challenge in a debate in Manchesterafter the Paralympics.