My life with cerebral palsy - SEN Magazine
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My life with cerebral palsy

Simon Stevens had to fight to get a mainstream education and is proud of what his cerebral palsy has helped him achieve

I have cerebral palsy (CP) and my level of impairment could be described as significant. As someone who has always been different, I am not sure how I really appear to non-disabled people but I believe that my cerebral palsy affects every aspect of my life and how I relate to all those around me.

Functionally, my CP affects my speech, mobility, hand control and, I would argue, my sense of humour. I feel that my speech impairment has caused the most difficulties for me and it continues to do so as, even today, the way I speak is generally not considered socially acceptable. To manage my needs, I employ two personal assistants and I have a live-in volunteer.

Experiments in integration

My educational experience is very interesting as it clearly shows how much things have improved for disabled people in the last 40 years. My first school, in the late 1970s when I was three, was the infant unit of the local mental hospital. This unit soon moved into its own purpose built school which was opened by the Queen as a part of her Silver Jubilee.

The teachers at the school quickly realised that I was intelligent and I have never doubted that without this, as well as my own determination, my life would had gone in very different direction. When I was five, I was “integrated” into the local village school, which did not go well. I was fine, but I think the fact that I still dribbled at the age of five did not impress the middle class parents or teachers. I am not sure what they would make of the fact that I still dribble today in my late 30s.

At seven, I went to the physically handicapped unit of a mainstream school where I feel I was semi-integrated. Again, I think my intelligence and determination played a big part in the fact that I shone there. When I was 11, in 1985, it was agreed that I would go to the local, all-boys mainstream school. This was a huge decision for everyone involved and was virtually unheard of for someone with my level of CP in those “dark ages” of inclusion. Indeed, the term “inclusion” had not even been invented by then.

Simon receives his Enterprising Young Brit Award from Gordon Brown in 2004.Simon receives his Enterprising Young Brit Award from Gordon Brown in 2004.I am not sure that the headmaster really understood what he let the school in for; what I believe he saw as a publicity stunt turned his school upside down, as it needed to adapt to someone who was so different that he might has as well have been an alien. I already had a very strong sense of right and wrong and because no one really knew what they were doing with me, I had to learn to fend for myself and teach them how to support me. This is a skill which I have never lost and today I continue to try to change the organisations I come across one by one.

I was bullied constantly, but I am not going to give you a sob story because I blame the system that allowed it rather than my peers who verbally abused me. When you challenge the system, you have to expect consequences. The worst thing the school did was to tell everyone to treat me normally without any explanation. As a result, the other pupils saw the so-called benefits I received, like a laptop computer and not doing PE, rather than seeing my difficulties and how these things helped me deal with them.

Life after school

I left school with nine GCSEs, high expectations and, most importantly, social skills. I am sure that even if I would have gained the first of these in a special school, I would certainly not have got the last two. This is why I am in favour of special education for everyone and am against special schools. By 1990, I was as mainstreamed as I was ever going to be and I went to sixth form college, like my non-disabled peers. I then went on to Coventry University in 1992.

When I was 17, something important happened to me: I realised that I was disabled. I believe that during my teens, as I was always around non-disabled people, I experienced what I have always called “ugly duckling syndrome”, as I grew up believing I was an ugly non-disabled person. Of course, I knew I was different and I had all these labels, but they did not mean anything as I was just me, and normal. I realised normality was an interesting double-edged sword. At 17, though, like a gay person coming out (which I did when I was 21), I realised I was a disabled person and a member of a political group that experienced discrimination.

Going to university gave me the essential freedom to explore who I was and how I wanted to live. I slowly grew apart from my family as I simply did not fit into their view of how they wanted me to be. As my time away from home increased, things got slowly easier as I accepted impairment related things in my life, like bibs, harnesses, helmets and nappies. I have since seen many people with cerebral palsy go through this very same process.

After graduating, I set up my own company as a disability consultant and, after my first venture went bankrupt in 2008, I became a successful independent disability consultant, trainer and activist. What I have achieved, including two awards presented to me by Gordon Brown, is enormous. I have carved out a name for myself and, I hope, made a significant contribution to society. What’s more, I think that all of this has a lot to doing with having cerebral palsy.

Living with cerebral palsy

I have studied impairment and identity for many years and I would argue that cerebral palsy is one of the easiest impairments to have. By this I mean that because it is lifelong, mostly functionally stable, non-progressive and does not directly involve pain, it is a very stable identity. It is something to be proud of and just get on with. As it is life-long, there is often little medical intervention at an age where a child or adult is involved and so one’s main interaction is with social services, where a social model of understanding tends to pervade.

In fact, I think that people with more significant CP are often happier than those with minor CP. In terms of stigma, someone with minor CP appears normal much of the time and is constantly at the risk of being “discredited”, and so has a dual identity. People with significant CP are totally discredited all the time and, as “freaks”, they do not need to try to pass as normal and so get on with being themselves. This leads to a strong sense of identity and pride in oneself. It also, I believe, encourages a natural desire to achieve and contribute to society to the best of one’s ability.

This is why I am so frustrated at the current debates on welfare reform and what I perceive as a group of people with often minor impairments, who see themselves as disabled, fighting for the right not to work and not to take responsibility. They are effectively, I would say, arguing for the right to be second class citizens, as they want the same treatment and protection as people who are sick with acute conditions. When many people with CP want to work and make a difference, but experience genuine barriers to doing so, it just seems that the world has gone a bit crazy and that the concept of disability is in something of a mess.

I am proud of the fact that I have cerebral palsy but this certainly does not mean that I accept the discrimination that goes with it, although I do not sign up to the idea of hate crime, as I simply refuse to play the victim. I know that many people find my confidence hard to handle and assume I am being arrogant. I think that many non-disabled people see the fact that I am successful in my work as amazing when it should be seen as normal, as it should be for anyone. I feel that some groups of disabled people enjoy self-loathing, and they are not happy when someone is actually positive about their situation. Many people with CP, though, have embraced the social model of disability and the civil rights won in the 1990s and simply got on with things in an honest and open way.

At 37, I have achieved so much in my life because I have CP, not despite it; the power of freakism can be strong and it is amazing what you achieve when someone is finding it hard to cope with understanding what you are. I am very happy with my life and I have a quality of life anyone should be envious of. People ask me if I would rather not have CP and the answer is a resounding “no”. I cannot imagine my life without CP, except that it might be more boring. I think I am a person with CP who has gone where no person with the condition has gone before and I enjoy playing my part in opening doors to make it easier for the next generation.

Further information

Simon Stevens is an independent disability issues consultant, trainer and activist:
www.simonstevens.com

Comments   

#3 Simon Stevens 2012-08-18 10:30
Thanks Laura for this comment and insight. I agree that as I had been totally out there I had to completely reinvent how I work with people and I have a greater say as people can feel out of their depth meeting me. Not everyone has that experience as you say.
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#2 Peter S 2012-08-16 15:46
Thanks for sharing this Laura. While it's sad to hear that such bullying and lack of understanding is commonplace, it has to be useful to discuss it out in the open.
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#1 Laura 2012-08-16 15:42
This is an excellent article. I have dyspraxia and can relate to several of the points raised. Dyspraxia affects the way I speak, and I have been judged negatively by others because my voice is not considered 'socially acceptable.' When I was at secondary school, I was mocked and called cruel names because of the way I spoke, and couldn't believe it when I was even bullied at university because of my speech. I know what you mean when you say that in a way it is easier having severe cerebral palsy rather than mild CP. As is the case with mild CP, having dyspraxia means that it may not be obvious to others that what I have is actually a disability, so they are intolerant of things I do which are directly related to me having it. I have had people in the workplace and tutors on higher education courses telling me to change the way I speak to sound more 'professional' etc, but they don't seem to understand that I can't just change something which is caused by a disability.
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