By Simon Duffy
The history of Independent Living in the United Kingdom is full of hard won victories and frustrating set-backs. Often, just as a sign of progress appears, we suddenly find ourselves back having to argue for the most basic human rights and having to assert – yet again – that disabled people are people, ready and willing to play a full part in community life.
It seems to me that we are at the beginning of a new era in the fight for independent living and this is a good time to reflect on some of the lessons we can learn from our history. I think that Neil Crowther should be thanked for creating a forum for reflection and debate.
Looking back, it’s important to go a long way back. In my recent book The Unmaking of Man I tried to understand the factors that allowed Hitler to murder about 250,000 people with disabilities – not as just one part of the Holocaust – but as the first essential step in the Holocaust. Before Hitler was able to murder Jews he had to spend many years stripping the Jewish people of their legal rights, their economic power and their physical presence in community. He faced no such obstacles when it came to disabled people – they had already been stripped of rights, money and presence – the institutions had already prepared disabled people to be the first victims of eugenic murder. And these institutions had been set up by doctors and others from the professional classes, decades before Hitler.
The things Hitler worked to destroy – rights, money and presence – remain the critical foundations for independent living. Independent living is impossible without appropriate legal rights, economic power and active participation in community life. In each area we can see that, while the language of independent living has been adopted by government, the substance is missing.
For instance, the UK ratified the UN Convention of the Rights of Persons with Disabilities in 2009, but, in reality, the legal rights of disabled are an inadequate mess. Take just one example, the right assistance to live an independent life. It is impossible for many people to live an independent life when eligibility criteria are set so high that one needs to be in desperate circumstances in order to receive support. It is impossible to take seriously a social care system where local authorities cap funding at residential care levels, when we know residential care is not what people want and is associated with multiple forms of abuse. It is impossible for independent living to flourish when so many disabled people must pay the vicious disability tax – which is disguised as ‘community care charging’ or ‘co-contribution’.
And so many disabled people, especially those with the most significant impairments, live in poverty. This poverty is not just rooted in an inadequate benefit system, it is also found in our support systems. For many years disabled people and their families have proved, again and again, that when they control their own funding – employ staff, pay services, invest in their own lives and in their own communities – they make better decisions than the professionals who currently control the health and social care system. Yet, how slow has been the progress towards giving people meaningful control.
Even when people seem to get control (through a direct payment or personal budget) they find the system won’t let go. Today the personal budget system, which promised so much, has become bogged down in regulations, restrictions, and nonsensical planning and assessment processes. There was a time when we thought that we had seen off all this nonsense, but it has all come back, with a vengeance.
When the system does spend money ‘on disabled people’ it spends it on segregation: special schools, residential colleges, residential care, day centres, respite services, special hospitals, special placements. This is where the real money is found. An analysis of funding in one local authority for people with learning difficulties found that 92% of funding was spent on segregation.
So far, so depressing. But there are some signs of hope – not inevitable progress – but hope. But, if we are to take advantage of these new opportunities for positive change, then the strategies we pursue must evolve. I will explore this in Part 2.
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