When I left hospital after becoming disabled, I moved into a hostel for people with physical disabilities. It was implied that this was a short-term measure: a few months of rehabilitation, adjusting to my new condition in a sheltered setting, and then I would move into a home of my own, where my children could stay with me.
Soon, I discovered that some had been living there for 10 years. Many residents had lived in institutions for virtually all of their lives; some were scared to live independently, but for most, the problem was finding a suitable place to move to. There were simply too few wheelchair- accessible properties around.
I was offered several cramped flats which were too small to allow my wheelchair to turn round, let alone accommodate my children. When I rejected these, I was told that I was “frightened of independent living”. Five years into my “short” stay at the hostel, and after involving my local MP, I finally moved into my own house, adapted for my needs.
I realise that I have no legal right to be here: the Housing Association wasn’t obliged to build the house around my disability, the local authority has no legal obligation to fund my direct payments – legitimately, I could be cared for in a residential home. I’m extremely grateful that both continue to work towards independent living for the people in their care.
I still feel that my situation is precarious, subject as it is to the local authority’s budget. And if I ever wanted to move out of the area – to take up a job, for example – there is no obligation on another authority to replicate my current care package, or provide similar accommodation.
In this society, help for people in need is based on welfare, not rights. Many, like me, are allowed as much independence as the budget will bear. Which is why I support Lord Ashley’s Independent Living Bill, which will give us, and the many still trapped in institutions, the right to live independently, with the support we need.