I was 25 when I broke my neck. I completed my rehabilitation and ended up living with friends. But the arrangement broke down and I was left no alternative but to enter residential care as there was no support in the community back in the 1970s. I cherished my freedom so the thought of a residential home terrified me – I thought of it as prison.
I said from the outset that I was not going to spend the rest of my life living in such a place. They weren’t sure whether I was confused or crazy
It did not take long after my arrival at the Leonard Cheshire home to start discussing alternatives. One of the other residents was moving out (although only because he was marrying someone who could, and would, support him), and he passionately believed in an independent living solution. We’d found out about the independent living movement in the US and started Project 81 (so called because 1981 was the first international year of disabled people), which aimed to help disabled people access funding for self-directed care.
We had to convince the authorities that our independent living idea was a viable option. The late disabled singer Ian Dury described us as the “escape committee”. I would not take no for an answer. In 1983 I finally moved into my own flat with personal assistants. My life was transformed because I had control over decisions about my support; I’ve employed my own PA now for more than 30 years. I need help with washing, dressing, eating, working and socialising – things most people take for granted. Without PAs, I can’t do any of these.
My move paved the way for thousands of other people with disabilities to follow suit and for the last government’s personalisation agenda, which had the potential to transform the lives of all those needing care and support. But with the impending closure of the Independent Living Fund (ILF) next year, I am concerned about the future for the 19,000 people who depend on it. I myself am lucky enough to live in Hampshire and have built up a positive dialogue with the council. We have already been working together on the transition from ILF to council funding.
But many ILF users don’t live in areas where the council takes this appraoch to independent living. They are understandably scared by the prospect of having to move back into residential care.
Independent living has been one of the most positive and life-changing policies for disabled people in the last 30 years. We can’t give up on it. It also helps the economy and fosters inclusive communities help disabled people to be part of the society they live in. The world is better if independent living is an integral part of it. How sad for everyone, not only disabled people, if future generations are denied it.