Tag Archives: life choices

Rising to the Challenge

I am flying solo this week. Louise my assistant, who provides my academic support, is as I write Stateside and hopefully having a good and well deserved holiday in the sun.

It has been an interesting week all round in terms of my support needs as my parents, the usual provider of my daily support, have been on a trip to Italy. My Auntie Sue and my mum’s friend Maureen stepped in to fill the gap. With all of the absences, I decided to take the opportunity and set myself a little challenge; this blog post is brought to you via voice recognition technology which is something I have dipped in and out of over the years, with varying levels of success. I put on the headset, stare at the screen and many times my head goes blank. I think this has more than a little to do with my school experiences, allowing me to dictate work was considered somehow as giving in and allowing me to be lazy. For my generation of people with disabilities, aids in whatever form were to be used as a matter of last resort, and something to aspire to be without.

I have found that it is a completely different experience compiling something in your head and dictating it onto the page, than it is to type manually. I always feel somehow disconnected from the process; it never seems to flow as well. I like the tactile element of crafting something and if that gets lost, I end up having to concentrate so much on the act of talking that I lose the thread of what I am trying to say.

I have casual conversations in person quite easily, but if I have to think hard, or repeat myself, my body and brain get all scrambled and a word will suddenly decide to stay in the “no mans land” that exists between my brain and my mouth. This gets very interesting when having a conversation with my Dad who has a significant level of hearing loss and misses part of what I say to him. At some points it feels like I am in the middle of a neurological war of attrition, with Dad’s responses usually along the lines of, “What, what did you say?”, “Can you repeat that?”, “Say again.”

The whole process of dictating also feels far more public. I used to have a horror of doing my university exams in this way. I remember on one occasion as always, I was separated from the other students. Myself, my support worker and the Invigilator were in a room, a grand looking affair with an oak table. As I took my place next to my support worker scribe, the Invigilator remarked that I looked pregnant with thought. What was really going through my head was, “Oh My God! He is going to hear my answer and judge its worth and mine by default.” a pressure my pen- wielding peers didn’t have, they got a pass or a fail in private.

For me, disability means that concepts like privacy, independence and personal choice are a negotiated, sometimes “grey” area. I get exited about software that promises this freedom, however nothing has been created that gives me this autonomy so far. The IPad has proven to be the biggest leap forward so far. I can access ebooks, talking books, notes and papers on something I can carry around in a small bag.

Like most writers, the things I write about come out of my own life experience, the difference is I never get to write alone in a cafe, in one of those moleskin notebooks so beloved of my writing friends. Well, I could give it a go but there is a good chance that when I came to look at it again, I wouldn’t be able to work out what I had been trying to say! Sometimes I wonder if in the future my notebooks will be unearthed by a social historian, or end up on some kind of documentary like the ones you see on BBC2 about the evolution of the written word. I never complete the process of writing alone, in fact in my case the act of writing can give me a story to tell.

A few months ago while planning an art journal page I came across the quote by the author Neil Marcus, “Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’ Disability is an art. It’s an ingenious way to live.” For me, this sums up my own views of my life as a disabled person.

 

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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.