I think we have to have a can do approach otherwise people will push us around. Until recently I was sick of hearing non- disabled people use the fact that many other people had a ‘can do’ attitude or a ‘positive attitude’ as a stick to beat me with though! Ten years ago I’d have rolled my eyes at anyone who said we could do anything we thought we 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 Syndrome fatigue.
I was mentally and physically exhausted, depressed, dispirited and ILL and even BEING ill felt like being a failure because I had always been fit and busy and healthy. This sense of failure and a lot of other pressures including having suffered a serious assault in my late teens meant that 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 and they can make you OR break you. We always talk though as if our ‘can do’ attitude is an asset and that it never becomes a dead-weight of overwork and despair. Kids with CP accept that it is completely normal for them to have to push harder than our 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 and the focus of many people around us is also on our success despite our CP. There is far more riding on our achievements and successes and it can feel like a very personal failure as well when we don’t succeed. The reality is: society may not be set up for our success and we aren’t going to be disappointed that we sometimes have to fight unfair battles if we know about it in advance.
Once you accept that you can fail and it is OK to fail because you know that the expectations of society were unfair to start with, that maybe the dice _were_ loaded _and_ you started the game with half the chips BUT knowing that you can face reality, pick it all up and PLAY the cards you were dealt. It is finding out what your particular reality is, not what people think based on an ideal of CP or a limited set of ideas of what we can achieve or what we should want to achieve or ought to achieve but finding out ‘your truth’and what reality as you as a person with CP – just one person with CP an individual in an individual reality that really works.
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 against disabled people having children.
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.
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…..my 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 that we’d had when my mum was doing the fighting.
I 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 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 and my doctors in order to shape my life realistically around my limitations but also to make damn sure that no-one else decided what those limitations OUGHT to be!
Not having been given a ‘can do’ attitude to the idea of starting a family but having found one in spite of that when I had to confront doing the things people had said I MUST NOT DO has made me realise that the inequalities are real but because I have proof even a terrible validation that life as disabled person in the UK does include prejudice and inequalities that don’t exist in other countries. YES we can and should have families if we want them, no it is not the destiny of every last disabled person to be reliant on others even if we have skills that can be used and YES we can and will fight just as our parents did to make sure that people know we are worth fighting for and are as good as the next person even beyond the limits of what other people think ought to be possible or desirable for us.
Just as my mother used to fight to get my needs met I would have fought Social Services for the right to keep my daughter and to meet her needs myself and remained calm however unjust their scrutiny or judgements about my fitness to parent, just as I asserted the right to try for a place at my preferred university having failed to achieve the requisite grades because sitting my exams suffering from an untreated brain tumour wasn’t the best example of what I could do and I wasn’t giving up my dream!
I may have had to adapt my dream of becoming an academic in a university to becoming an academic in my bedroom behind a keyboard I can barely operate, but I have gained the respect of people I’d never have met as a history tutor and perhaps helped people who needed my help far more than any student studying sixteenth-century literature ever would. Struggling alongside friends in the UK in the same boat has taught me that my strength is knowing my limits and knowing that the limits of others and the expectations of others are not a blueprint for my life. If I do I know I may have to survive my future in an unjust country that has not been so prejudiced against disabled people for sixty years and that I may have to fulfil impossible requirements in order to retain financial support. But I have to and since I have to, I’m going to make a good job of it. If I do the impossible (and believe me I’d done it before I was two days old) it’s going to be MY impossible, not anyone else’s!