For over 30 years, disabled people have been fighting for a right to independent living. And today the Joint Committee on Human Rights (JCHR) calls for a right to independent living to be incorporated into the UK’s legislation.
The term ‘independent’ is usually taken to mean ‘doing things for yourself’, being self-sufficient. Importantly, in the current political context it is often used to mean not being ‘dependent’ on the state.
Disabled people don’t mean any of these things when we use the term ‘independent living’. Instead it means having choice and control over where and with whom we live and over the support, adaptations or equipment needed to go about our daily lives. Without such choice and control, disabled people’s human rights are at risk. This was first identified by people like Paul Hunt, living in a Leonard Cheshire residential home in the 1970s, who insisted that it wasn’t his impairment that restricted his opportunities but the way that the Home dictated what he could and couldn’t do.[1]
Simon Brissenden, another pioneer of independent living, argued in 1989 that
Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it.[2]
And in the early 1990s, a group of activists involved in the British Council of Organisations of Disabled People, came together[3] to articulate the underlying philosophy of independent living:
· that all human life is of value;
· that anyone, whatever their impairment, is capable of exerting choices;
· that people who are disabled by society’s reaction to physical, intellectual and sensory impairment and to emotional distress have the right to assert control over their lives;
· that disabled people have the right to participate fully in society.
One of the results of the international campaign for independent living – and the links made to human rights – was the United Nations Convention of the Rights of People with Disabilities, which came into force in 2008.
Article 19 of the Convention concerns the right to independent living and the JCHR calls for this right to be incorporated into domestic legislation.
In the current context of attacks on the benefits and services that help to create a level playing field for disabled people, the JCHR find that there is a risk that the UK is going backwards as a result of the cumulative impact of these reforms. As a result of evidence presented to them, the JCHR have concluded that:
· the tightening in eligibility criteria for adult social care
· the replacement of Disability Living Allowance with Personal Independence Payment
· the closure of the Independent Living Fund, and
· the changes to housing benefit
all risk contravening Article 19 of the UN Convention.
The report also points out that the right to independent living applies as much to people living in residential or nursing homes as it does to those living in their own homes – a welcome recognition given the continuing evidence of a denial of basic human rights that is all too common in communal provision.
The Committee heard evidence that a right to advocacy, and to independent advice and information, is a cornerstone without which independent living may be unachievable for many. They therefore called for implementation of Section 2 of the 1986 Disabled Persons Act, which concerns the right to advocacy but was never enacted.
Government Ministers, in their evidence to the Inquiry, used the language of the disability movement. They spoke of a support for choice and control, for equal rights and independent living. This report – thanks to the evidence that disabled people presented to the Committee - exposes the gap between their words and their deeds.
[1] See Vic Finkelstein’s account of this struggle, http://www.leeds.ac.uk/disability-studies/archiveuk/finkelstein/Administrative%20Challenge%201.pdf.
[2] Simon Brisenden, ‘A Charter for Personal Care’ in Progress, 16, 1989. Disablement Income Group.
[3] This discussion was part of a research project I carried out in 1991-2 on independent living. It was published as ‘Independent Lives? Community Care and Disabled People’, Macmillans, 1993.
