Great Expectations?

How do you feel politically as a woman with a disability? I was sitting in my university interview frantically trying to think of a suitably intellectual response; the truth was that I had never really thought about disability in relation to personal politics. It was 1999 and my university interview, along with the last two years I had spent at my local sixth form college, was the first indication that things were changing.

I have cerebral palsy as a result of premature birth and have been a full-time wheelchair user for thirteen years, before this I was able to walk short distances. I am now thirty-four and growing up with a disability is, I think, a very different experience today than the one I had. In the 1980s and 1990s when I was at school this meant segregation at a special school. Every bit of school-life was, in some way, geared to being physically independent; you had to strive to do things for yourself even if it was very difficult or took a mind-numbing amount of time, the rationale being “We won’t always be around to help”. I remember getting up at an ungodly hour to get dressed for school, only to have to repeat the process in reverse a few hours later for swimming or P.E., to fit in socially and be seen as a success you had to be self-reliant. I often wonder now if perhaps this was in part a reflection of the Thatcher era, when one either “sank or swam”, the result of which was that I spent the best part of sixteen years constantly working to minimise and compensate for the problems I have. We live in a society that isn’t, even now very accepting of bodily imperfection, you only have to read some of the recurring debates about body image, size and shape that exist particularly in relation to the female form to see how pervasive and negative social attitudes can be .

My biggest ambition growing up was to be good enough to go to a mainstream school and when at sixteen I had the opportunity to be ‘mainstreamed’ I jumped at it! For me this made all the physiotherapy, surgeries and relentless droning on about independence and life-skills have a point. I saw this as my chance to be ‘normal’, to do things like everyone else. I spent two years working hard at not being a disabled person, I was finally getting the life I had chased that had, until then, felt like it belonged to someone else.
I began to feel socially restless; I have a brother two and a half years younger than me, who was beginning to have the freedom and independence you expect of mid-adolescence. I felt as though life was passing me by and I realised that if I didn’t do something about it I could still be living this life in 50 years, with everyone knowing where I was and what I was doing, becoming increasingly socially isolated as my friends got to grow up and I remained in a perpetual state of adolescence, forever waiting for life to start. There was talk of a family move to a new area and it was this that made me think about living on my own. The suggestion was not met with universal approval, “How will you cope on your own?” “Where will you go?”, “Social Services will never think this is a good idea.”

It was a very fraught discussion and I felt totally alone, as though nobody could see me as more than a collection of needs. Looking back now I can see their point, they had spent years being told about the need for me to be independent and self-sufficient. Goals were set and achieved and I don’t think that anyone ever really thought about what the end point of these efforts should be. For all the talk about independence I found that to suggest to people that I, an adult with a disability, could function outside of a family unit seemed as alien a concept as a fish breathing air.

The proposed move became a topic at regular meetings with my hospital consultant who sought to reassure my mother with the words, “Let her try it, if it doesn’t work out we can always try again later.” I knew that this was going to be a one time thing; that is one of the most stressful things about being disabled, people are watching what you do all of the time and judging your success or failure. For example, I know of non-disabled people who left home, only to return a few weeks later, they are not seen as failures or dependent and it does not define the course of their lives in the way that I knew could happen all to easily to me. People tell me that I am a perfectionist but I think this stems from constantly having to prove myself and show that I can make decisions. I have never had the space to get things wrong.

After a few months on the housing list I was allocated a flat. The move was a successful one and the ten years I lived in the flat were happy and productive. Living ten miles away from my parents provided space for a private life, whilst still being close enough for them to provide support. The decade saw “independent living” for disabled people become widespread, care and support increasingly becoming available to enable individuals with substantial disabilities and requiring high levels of support to live the lives they chose on their own terms.

When I left home I was frequently asked if it was because my parents couldn’t cope or
just didn’t want me around any more. By the time I left my flat, living independently seemed to me to have moved from an experience that I felt I had to earn the right to by making my body conform to the ‘able’ culture into which it was born, to a means by which success is measured. I and my parents are frequently asked if I live independently in a tone that implies I need permission.

For about four years now I have lived in a bungalow inherited from my grandmother which has added a new dimension to the interest taken to my living situation. Recently two health professionals standing in my bungalow in the small hours of the morning asked, “Has this been done out for you?” I had to resist the temptation to reply, “Evidently.” Of course, what they are really thinking is, “How does she afford to live here and who pays?” Having spoken to colleagues about this issue, I find they are shocked that professionals think these are appropriate and necessary questions to ask. The difference is that people think that because I am disabled they have a right to know.

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