Beyond ‘Your Child With Cerebral Palsy”. If I could sell the version I needed as a person with CP. …..

‘Can Do’ is a topic that comes up a lot in disability circles. I’d so much like to dig deeper and look at what might be behind it as a cultural attitude that I’m thinking of writing an article on this soon. To me this comes up so often that it is either a fact of our lives or a stereotype. Until recently I was sick of hearing other non- disabled people use it and definitely had it filed under ‘S’. Ten years ago I’d have rolled my eyes at anyone who said we could do anything I thought I could’. It felt as though I’d tried…and failed. I was 28 and although by 25 I’d got a Master’s degree and got married I’d failed to achieve my ultimate dreams of having a family and a career or even a job. I’d pushed myself past a brain tumour as well as the CP and then moved house and got married as well and by 28 I was bed bound pretty much all the time with what I now realise was Post Impairment Fatigue. This sense of failure and a lot of other pressures including having suffered a serious assault in my late teens meant I even ended up having a mental breakdown and I felt like a terrible person. And every time I had to listen to people with a ‘can do’ philosophy’ that they’d wheel out especially because they wanted to keep believing that ‘disabled people can do everything they set their minds to’ I wanted to scream: “I DID it and look at me now!”

It was horrible. I want to be honest about that NOT to scare anyone but because there is such a very vital lesson in it: UNFAIR expectations become PART of you with CP.  Kids with CP  accept that it is completely normal for them to have to push harder than able bodied peers or family and I think able bodied adults can often not realise that as children we really BELIEVE our parents when they say ‘you can do anything’.  Personal success, a work ethic and pushing ourselves is I think a part of our focus  us far more than on other kids so it feels like a personal failure as well when we don’t succeed. The reality is: society may not be set up for our success. Once you accept that you can fail and it is OK to fail because the expectations of society were unfair to start with the dice were loaded and you started the game with half the chips then and only then can you pick it all up and PLAY the cards you were dealt.  It was only after almost all my family (except my husband and my father ) had decided I was a failure and ‘not good enough’ and a ‘burden’ they didn’t want ‘responsibility for’, only after the UK press had started to be open about their opinion of disabled people, our value to the economy, our cost and our essential lack of value *(as they see it) medical profession had turned on me and (as is unfortunately common in the UK) ordered me to terminate a pregnancy when I had desperately wanted to try for a baby for years and never had the courage to face the disapproval of my family or UK society which is essentially still discriminatory and still placing tremendous barriers in the job market and in the social world against disabled people having children.  It was only in that moment of bleak clarity

To be fair to myself I now realise that I’d been under tremendous pressure to succeed, I was coming from a very pushy school, ambitious parents and also (most importantly) the able bodied world’s standards of what someone with mild disability can do and I wasn’t meeting my expectations or anyone else’s. It looked like I’d broken myself to get to the top- and I hadn’t even got there. Let’s be realistic you can burn out trying to do the impossible – anyone can. I used to say to my husband, every ABLE person would be an Olympian and every disabled person a Paralympian. BUT the attitude that you can and will is vital otherwise able bodied people will put more barriers in your child’s way. I don’t know what other people with CP think but looking back I do think however that it may actually help kids with CP if we know WHY disabled people have to have a ‘can do’ attitude. It isn’t for itself alone. We need to be clear on WHY it is we have to be this way because it gets hijacked by people who are keen to see us as having been BORN with a ‘can’ do attitude as a sort of compensation for being disabled. This attitude is a pain in the backside and actually needs ditching because it has some negative side effects.   It isn’t there so we can be an to be inspirational light to able bodied luckier people. It isn’t because we are superhuman. It isn’t that we somehow have more pluck, grit or happiness. It is simply because if we don’t we WILL be dismissed by society without as second thought. And we deserve better than that. Life will be tough on us and unreasonable and we have to be able to fight back.

Not having been given a ‘can do’ attitude to the idea of starting a family has taught me that I hadn’t personally been taught a ‘can do’ approach but had actually been given a very limited version by people who were not themselves particularly positive thinkers and who tended to hold me back for every step forward I took that wasn’t on their restricted list of plans for me or which wasn’t convenient for them.  When I came the top of the class I enjoyed it and when I threw myself into a university degree I loved it for its own sake BUT in being the top student in a subject and trying to make a full-time academic career I was trying to fulfil the limited expectations of family and society and what they thought it would be necessary for me to do in order to be a credit to them.  Of course when I ‘failed’ it was often because society or my family pushed me to be a success but did not want to make the necessary changes to make that possible such as adapting an academic post to my energy levels. Maybe a career in academia really wasn’t possible or maybe I simply needed to find a route through the barriers of time, energy, the lack of knowledge of assistive alternatives that could help me fulfil my dream of a PhD and an academic post.  As it was I failed at one of the first hurdles: realising that what teachers who knew how many wives Henry VIII had knew about BEING an adult with CP was a big fat ZERO.

Adults with a limited knowledge of the world beyond education had told me that if I worked hard I would get a job. This is not precisely accurate for any of us in this world but the fact that they NEEDED to believe it tells us something about the nature of our society and its relationship to disability. …..

I think we have to have a can do approach otherwise people will push us around. As long as there is a balance between you CAN do you also realise that when you can’t it is not only you who ha the responsibility for the final outcome. However I’m sure I could have if people had been willing to adapt to my needs.  Attitude is made not innate. There were a lot of barriers in the UK 30 years ago to getting the right educational support but my mother fought for the best we could get and stuck with it so that I could go to a local school and get the right assistance when the education authority would have stopped us getting where we wanted to be. At primary, at secondary and at college and Uni at each level there were bureaucrats to fight. We never accepted a watered down education and I got the maximum out of it and went all the way to a Masters degree. BUT… education and getting ‘a good job’ was the only bit my family had given me a can do on. They hadn’t realised that I was going to have to FIGHT to find a reasonable employer that I would get turned down for the jobs I set my heart on, that universities would love me as a student but be unprepared to have me as a lecturer and that the same barriers would be there all over again in the job market that we’d had when my mum was doing the fighting. I’d needed someone to be realistic and tell me that the fight would never stop but that just as we’d won me support and scholarships I could win over employers, fight employment tribunals if I had to. Instead they’d told me over and over that I could get a good job if I worked hard enough at school when in fact just like school I would need a can do attitude so that I was prepared to argue with every potential employer, every person who let me go in spite of equality law and eventually with my partner, his family and my parents so that having created  a manageable set of contacts I didn’t throw them away for my partner’s job change

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