Monthly Archives: October 2013

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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Back to the Future

This week has seen my spirit of adventure rekindled. It has now been more that a year since the Paralympics; London 2012 was heralded as the Games that challenged the stereotype of disabled people, creating positive role models and convincing the world that a universal, accessible utopia was achievable.

Dare I say it, access is within the realms of achievability well, where it is deemed ‘appropriate’ and ‘reasonable’ anyway. Last years high profile sporting events have had some interesting consequences for me, every professional I meet seems to expect me to be sporty! A few months ago I was speaking to a group of medical students as part of an NHS drive to acquaint future medics with the needs of the disabled population. I discussed my disability, the needs I have and how they as doctors could better respond thus making interactions more positive and yes, even functional and productive.

I finished talking and asked if they had any questions they would like to ask me, there was silence and then it came. “Have you ever thought of playing wheelchair basket-ball?” Ah, that Paralympic legacy again. The truth is I have tried to be sporty over the years, I used to love horse-riding, a therapeutic activity originally suggested by my physiotherapist and I have to say it was one of their better ideas. I had some amazing adventures, including riding down Bryce Canyon in Utah, USA aged 11, the ultimate in inclusive activities. I also enjoyed swimming, my great grandfather was a medal winning swimmer. The problem is that if you need the water temperature of the average nice cup of tea in order for your muscles to enter a state of co-operation, it is not a mantle I could reasonably take up. Austerity measures have seen the only purpose built specially heated swimming pool closed and let’s face it, as 35 years old the window of opportunity to achieving sporting prowess has probably closed.

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However, all of this talk of activity made me feel I was letting the side down, so when my aunt put forward the idea of visiting the garden of a local stately home I thought to check out their disabled access. The National Trust literature advertised ‘Trampers’, a cross between an all-terrain vehicle and a conventional mobility scooter. The resultant vehicle can handle terrain my conventional wheelchair would require someone skilled in conflict resolution to achieve. The machine handled with ease over those oh so visually pleasing 17th century garden paths and driveways, granted it was a bit slow and cumbersome. We had one hair-raising moment trying to manoeuvre between 2 listed walls into a courtyard, I hit 1 of said walls despite my aunt’s navigational advice, “Left had down”, “Keep steering column straight” etc. Difficult to follow if you are a dyslexic, CP, non-driver. After 10 minutes of trying to get through this gap, rain came and added insult to injury. I got through, exhausted and insisted on going for lunch in the cafe. I concluded that this is as sporty as I am ever likely to get these days.

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I suppose the point I am trying to make is that despite how brilliant this day was and the amazing success of our Paralympic athletes in 2012, these positive role models are no help when you are trying to navigate your way around a listed 17th century garden in the 21st century. Protecting our national heritage does come at a price, and that price may well be ease of access to those with disabilities unless you are willing to demolish a couple of listed walls.