We are delighted to be able to reproduce an article that has been specially edited for V360 by Alain Catzeflis from the Alliance for Camphill Steering Group. You can also see the original version on this link : https://www.allianceforcamphill.com
Being born with a learning disability – any disability – is not the result of poor parenting or bad karma. It is a lottery. Equality of opportunity means everyone should have a chance at the jackpot.
The vulnerability and the rights of people with learning disabilities
The turn of the year is a good time to reflect on how, as free people living in a rich country, we can endow our fellow citizens with impairments or disabilities – the vulnerable – with the right to “life, liberty and the pursuit of happiness”
People with disabilities get a raw deal. Hardest hit by Tory austerity, subjected to a humiliating benefits assessment regime they often struggle to keep their heads above water.
For the record we do not believe that a person’s political beliefs (by and large) tell us much about them as human beings. Some issues (should) transcend party politics: one of these is what it means to be disabled, what kind of life you want and how society and the state can help support you.
But we find it hard to understand how, collectively, this government and this generation of Tories can ignore not just the very real suffering caused by the politics of relentless austerity and welfare ‘reforms’ that might well have been designed to deepen the gaping inequalities which make Britain such an un-level playing field. People slip off the edge into a bottomless chasm from which some never return.
The pioneering post-war Welfare State, one of the great universal social landmarks of the 20th century is being dismantled piecemeal and sold off to the private sector. It is, quite literally, having the heart ripped out of it. The ethos of pubic service on which the vulnerable often depend is being sacrificed on the altar of neoliberal economics .
At the core of this is a dismal world view that divides human beings into strivers and scroungers. Benefit Street is a parody of that dismal belief. It’s a Trumpian view of the world and it informs every aspect of policy – which is why the roll out of Personal Independence Payments (PIPs) and Universal Credit is a disaster.
2017 a bad year for disability
This has been a year that has exposed as never before the grim reality of life for many people with disabilities in the UK:
- – The United Nations said Tory austerity policies were piling misery upon misery creating a “human catastrophe” for people with disabilities.
- – The Equalities and Human Rights Commission in its 2017 report “ Being Disabled in Britain: a journey less equal” said it was “shameful” that people with disabilities were still second-class citizens.
- – A survey by 90 disabled people’s charities said that austerity had hit disabled people hardest leading to isolation and ill health.
This government insists that Britain remains a world leader in disability rights. In an attempt to recapture the initiative it announced recently that it intends to “bring together global leaders and technology companies in 2018 to “tackle the barriers that prevent people living with disabilities in the world’s poorest countries from reaching their full potential”.
The spectacle of a government which stubbornly refuses to acknowledge the widespread suffering caused by its policies on its own doorstep trying to fix the problem of disability around the world is a bizarre form of displacement activity.
Degrees of vulnerability
According to the World Health Organisation’s 2011 report there are around 1 billion people with disabilities on the planet. What is striking about that report is the meagre reference to people with learning disabilities. This is not surprising. By definition, people with learning disabilities are less likely to speak up for themselves. They are less vocal and therefore less visible. There are fewer of them too so they have less clout.
As a result of this imbalance the debate about disability tends to be dominated by the needs of people with physical disabilities, or if you like the wheelchair lobby. That’s understandable. The wheelchair after all is a powerful universal symbol of disability. And it has many, glamorous champions with great influence: Stephen Hawking, Lee Pearson, Helena Lucas, Stevie Wonder.
Of course many of the challenges faced by people with disabilities apply across the board –the most pernicious of which is prejudice born of ignorance. Basic human rights are universal. And people with physical disabilities fight to change the world around them: shops, airports, public transport, streets. This is a huge task.
But there is little doubt that in the hierarchy of vulnerability learning disability which tends to be more complex – and is sometimes invisible to the naked eye – plays second fiddle when it comes to policy, practice and funding. It is also all-too-often confused with mental health even by our leaders – as Theresa May shockingly demonstrated during the election campaign in June.
There are around 1.5 million people in the UK with a learning disability, an intellectual impairment or autism. One of them is a loved one. Let’s call her J. She is in her late 20s. She has moderate learning difficulties and autism. She cannot read but has an excellent if selective memory. She is funny, stubborn, loves Abba and air travel and hates salad.
She lives in a committed Camphill community where she shares a house with others. Elsewhere she and her mates would struggle with loneliness, social isolation and prejudice and face constant reminders of their limitations. She works on the land chopping wood for the hearth and in the bakery making bread others eat. She enjoys her work. It gives her a sense of achievement.
She has a rich cultural and social life. In an environment where there is no ‘Them and Us’ the sense of being disabled shrinks into insignificance which is transformative. She is surrounded by people who love her and watch over her. She has fun. And she feels valued.
Her community is, however, merely the hub of her life. The wheel extends out much further. She is often out and about, she travels, goes to pub, loves musical theatre, has an extended network of friends and family whom she sees often. She is fortunate. Her life is full. This provides her with an emotional stability that has virtually eliminated her incidence of self-harm and her meltdowns. There are no words to express our gratitude to those she shares her life with.
Choice trumps ideology every time
The ideologues in the disability movement would have it that by living in a communal setting she is not being fully included in the community at large. That she is segregated even institutionalised. And that to do be fully part of society she would have to live in that mythical “ordinary house, in an ordinary street in an ordinary suburb”, purchasing her daily support from commercial care providers who are part of a cut-throat competitive tendering process using her personal budget.
Their argument essentially is that being independent and living in a community are incompatible. It conjures up, I suspect deliberately, images of an era when people with learning disabilities were put away in institutions or insane asylums. The horrors revealed by the Winterbourne scandal played into this narrative.
The life they advocate is fine – indeed desirable for many- for those who have the judgement or the advocates to help them navigate the system and the obstacles of daily life. But for J who is truly vulnerable it defies common sense. The reality is that in that “typical house” J would become a prisoner, isolated, an unreliable care system her only lifeline. Putting her through that in pursuit of some distant, political goal would be perverse. It would not be inclusion. It would be throwing her to the wolves.
She has a very limited intellectual understanding (or capacity as jargon has it) so she cannot reason or grasp the consequences of her choices. We have allowed her to guide us towards what she wants through practical experience and trial and error over many years. And it is clear to us, and to her especially enlightened local authority that funds her, that her Camphill community in East Sussex is where she thrives.
Freedom to live how and where we choose is sacrosanct. But a community, people sharing their lives freely, is not an institution. It is a human network based on love and interdependence not coercion. I try not to be personally offended at the insinuation that we are depriving J of her human rights.
Full inclusion it goes without saying is desirable. Employers should be more accommodating, filmmakers more inclusive, supermarkets more thoughtful, nightclubs more welcoming and the man on the Clapham omnibus friendlier. But this idealised vision of inclusion is to say the least, a work in progress. In the here and now, in the real world, we have a duty to protect those for whom we are responsible.
The ECCE (European Co-operation in Anthroposophical Education and Social Therapy) put it like this “Full inclusion or ‘mainstreaming’ compares our society with a river. ‘Normal’ life is found in the broad flow of the river, confronting all the different opportunities and risks life has to offer providing human dignity and a meaningful life for everyone. However, the flow of life in the mainstream can be too strong and competition too extreme for some children and adults with special needs. In a natural river there are lots of calm places where the same water flows calmly, though connected with the mainstream. These calmer places can do a wonderful job in giving support to people who might drown in the mainstream.”
This analysis, which I know will upset some committed activists, is not intended to diminish their enormous contribution to the advancement of disability rights or to divide the disabled community. Nor does it claim that one disability is more onerous or more deserving than another. It merely seeks to point out that lumping all people with disabilities together – for example by confining the state’s responsibility to a junior minister in the Department and Work and Pensions – inevitably leads to lowest common denominator policies.
There is a deeper, more serious issue that is not confined to one political party. Work is an important way of helping people with disability and creating a fairer society. But as Maria Lyons, author and founder of the Camphill Research Network, points out, work is not necessarily the same as employment.
Persuading companies to employ people with physical disabilities is hard enough. For those with intellectual impairments let alone serious learning disabilities it’s a monumental task. Employment is first and foremost a means of getting money to live. It is a bargain struck between two parties – employed and employee – each with a degree of leverage.
There are people with learning disabilities – generally comedians, writers, and artists – who despite their vulnerability have leverage. You will find many inspiring examples on our website. (https://www.allianceforcamphill.com/performing-arts.html)
But they are very much the exception to the rule. Unlike, say, Stephen Hawking who can a change our world by communicating through a squawk box and write best sellers, someone with a learning disability has very little if any “earning power”, often no power at all.
In the eyes of a market-driven system whose organising principle is survival of the fittest they have little “economic value”. They produce no return on investment. They are a cost, a liability on the balance sheet. So in any cost/benefit analysis, to round off this uncomfortable metaphor, they offer no value to the state because they are deemed not to be productive.
This is starkly demonstrated by local authorities that refuse to fund workshops for the learning disabled, such as those in Camphill communities, because no measurable “outcome” is possible. Providing people with a learning disability with work becomes philanthropy not a basic human right.
To achieve true equality of opportunity we need a fundamental rethink about how both as a society and a state we view and support people with an intellectual impairment. Being born with a learning disability – indeed any disability – is not the result of poor parenting or bad karma. It is a lottery.
If we believe, as the Universal Declaration of Human Rights states, that we are all “born free and equal in dignity and rights” then equality of opportunity must be our touchstone. They won’t be the same opportunities. And they won’t contribute to Gross Domestic Product. But it will make us more civilised and many people happier and, for that matter, healthier. That is not nothing.
But how? Here are four suggestions for a better and safer way of doing things:
- We need to stop seeing care as a commodity to be outsourced in the market. The record of Capita, Maximus and Atos in assessing benefit claimants for Personal Independence Payments (PIP) and Employment Support Allowance (ESA) is shockingly poor, cruel even.
- We need to stop seeing people with disabilities as merely “service users” who buy other people’s time to help them live or eat or go to the shops. People with learning disabilities need a life not a service and certainly not charity as the excellent Open Future Learning organisation says
- We need to stop competitive tendering for the care of people with learning disabilities. In the 21st century it is devoid of a sense of public service and, wise, it doesn’t work.
- We need a fundamental rethink about both as a society and a state we support people with an intellectual impairment.
This rethink must extend to all parties including Labour. The Tories don’t get it. They see work – or rather employment – as the answer. But Jeremy Corbyn’s catchy slogan “ Nothing about you without you” does not come with an overarching strategy or for that matter a sense of what the fundamental problem is. Throwing money at it isn’t enough.
The first step in this process is to acknowledge that, while we are not all the same, we come to the starting blocks as equals and that equality of opportunity is our birthright.
Alliance for Camphill Steering Group