My parents had no idea what life would be like when I was born. In some ways this was a good thing in other ways my mother said it scared her. And sad to say, her ignorance has caused me great pain and cost me ,many things that I would hope the next generation of parents actually DO want for their kids! Like independence, freedom, happy social relationships, sexual relationships and a family life because that is possible and desirable far more often than most folk think. It was my mother’s often deliberate ignorance of what I AM capable of and that the prejudices that she followed that were outdated and stereotypical that were more to do with what she wanted than what I might need or want, that have without doubt done the most harm.
I don’t say this to complain. I say this because I applaud every parent on here who wants MORE of ANYTHING for their child. More love, more mobility, more knowledge, more power, more experiences and more future and more fight even if bodily mobility isn’t ‘perfect’. In many ways the parents of those born 30 years ago in the UK were given some really bad information which meant many of us in the late 1970s were actually DAMAGED by incorrect early procedures. Or by ceasing of procedures by poor physicians. So I think we have a lot to give when we can say, “No your Dr could be wrong!” and give a parent the tools to face down a poor care situation.
It is society that often lets people with CP down. If you look up ‘the Social Model of Disability’ you’ll see that pointing out that society often fails us – not that WE are failures – is an often empowering political angle and is NOT defeatism.
The Social model of Disability implies that what is then required that we kick society’s butt for a fairer access and has the goal of equality and diversity and RIGHTS that far outweigh the ‘medical model’ image of the tragic disabled body. I don’t think a model or approach which prepares for possible difficulties ahead, necessarily equals “I’m rubbish”. If we phrase things carefully so that “X was bad but Y is how I think it could have been done better” we adults with cerebral palsy and the children and teenagers who will one day be adults, can surely use this model as a route map to point to solutions that OVERCOME barriers that -realistically-do exist.
As a bright child I was taught that there would be NO barriers and that I COULD do ‘anything’ my non-disabled peers could do. I was harried into a breakdown and physical collapse by the age of 20 because no one around me acknowledged the REALITY of bullying, abuse, overwork, and ignorance that had we understood we could have tacked head on. That I truly believe which would have been a positive and had my parents been both optimistic and realistic I would be healthier, happier, in touch with them and in a realistic employment. When the bar was too high. _Any_ parent of any child – disabled or able-bodied can set the bar too high and blight their child’s future with unreasonable expectations.
It’s maybe a reminder that with different perspectives there needs to be a light touch? Perhaps we need a *look away now* for folks who’d rather not know? Heaven knows there are plenty of sites where parents of kids with CP can be seen venting how rubbish their children with CP are (and though thankfully this isn’t one of those places because the parents clearly from this want even more stuff to know) ANYONE CAN inadvertently cause some pain that is felt like daggers by people proud of how far they have won out.
A family whose consultant had ‘advised’ based on 40 years experience an irreversible procedure on a pre teen CPgirl which I knew to have caused lifelong damage in a friend of mine. Ihad had no intent to advise orproselytise but a friend shared my blog on the feelings and experiences of one woman about such procedures. Through the eyes of a human woman with goals, achievements, failures, mistakes and aspirations instead of a clinician due for retirement, that family saw their daughter as a human and a unique being. My great physical and psychological distress at what had gone WRONG for me became a beacon of HOPE and I was able to point a light in directions that even the child’s relatives couldn’t have foreseen with that ‘specialist’ pushing his agenda.