Don't Crowd Out People with Learning Disabilities
Author: Alain Catzeflis
Alain Catzeflis is a member of the Alliance for Camphill Steering Group. Here he reflects on the way people with learning disabilities can sometimes be left outside the disability movement and he argues that insufficient attention is paid to the different contributions they can make and the role of communities in realising their potential.
Valuing people with learning disabilities
December 3 each year is International day of Persons with Disabilities. It is a day to reflect on how, as free people living in a rich country, we can endow our fellow citizens with disabilities with the right to “life, liberty and the pursuit of happiness.”
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. But there is little doubt that 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 2017.
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 almost magically empowering. 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 the 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, institutionalised. And that to 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, those who have the judgement or the advocates to help them navigate the system and the obstacles of daily life. But for J 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 the jargon has it) so she cannot reason or grasp the consequences of the choices she makes. 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.
A community, people sharing their lives freely, is not an institution. It is a human network based on love and interdependence not coercion. Placing ideology over choice and the freedom to live as we choose, when that is possible, is irrational. Not least because replicating the rich texture of J's life on our ordinary street would break the bank. It would be unaffordable.
Trying and failing to explain this to wheelchair-bound and clever activists is a surreal experience. I try not to be personally offended at the insinuation that we are depriving J of her human rights.
The logic I’m sorry to say is not that far removed from the dismal premise behind former Tory leader Iain Duncan Smith's deeply flawed Universal Credit: this is that life for claimants revolves around a monthly budget - and not a daily struggle to make ends meet - and if it doesn’t it should. They are both forms of social engineering.
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, today, this year, and the one after that, we have a duty to protect those for whom we are responsible.
The ECCE (European Co-operation in Anthroposophical Education and Social Therapy) puts 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 for them to a junior minister in the Department and Work and Pensions - inevitably leads to lowest common denominator policies.
2017 was 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 report “ Being Disabled in Britain: a journey less equal” said it was “shameful” that people with disabilities were still second-class citizens.
- A report by 90 disabled people’s charities said that austerity had hit disabled people hardest leading to isolation and ill health.
The government insists that Britain remains a world leader in disability rights. In an attempt to recapture the initiative it has announced 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. If I didn’t know better I’d be tempted to say it was a stunt dreamt up by spin doctors.
There is a deeper, more serious issue. 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 do have leverage. You will find many inspiring examples on the Camphill website.
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.
There are, it is true, well-intentioned safeguards in place to ensure that people with learning disabilities are treated with the same dignity as everyone else. There has been progress. We are after all the country of Wilberforce, John Stuart Mill and Beveridge. The Mental Capacity Act (2005) and the 2014 Care Act provide a framework for equal treatment.
And yet the courts are full of vulnerable people seeking redress against local and national government based on these very statutes. The Human Rights Act is an additional protection although how that will operate after Brexit is anyone’s guess.
A legislative framework is not enough. Far from it. 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.
First we need to stop seeing care as a commodity to be outsourced in the market. And 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 says.
Second this rethink must extend to all parties including Labour. The Tories don’t get it. But Jeremy Corbyn’s catchy slogan “ Nothing about you without you” does not yet come with an overarching strategy or, for that matter, a sense of what the fundamental problem is. Throwing money at the problem isn’t enough. Which is why our 38 degrees petition advocates a fundamentally new approach and a full cabinet post for people with disabilities.
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. To achieve that we will need to change our mindset as well as our priorities.
This essay was first published by the Alliance for Camphill.
Don't Crowd Out People with Learning Disabilities © Alain Catzeflis 2017.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.