I often find myself answering questions about my disability and the nature of my diagnosis. I have cerebral palsy which most people consider to be my primary condition. However, I also have dyslexia and dyspraxia that are associated with it. It is interesting to explore the differences in attitudes and expectations to the physical aspects of my disability and the learning difficulties I have.
It fascinates me that even in the 21st century I can tell someone I have cerebral palsy and they will most commonly ask me if I can feel my legs, have children or pass it to any children I have. Then I begin to explain the intricacies of my diagnosis that it is because I was born prematurely and stopped breathing many times, which damaged parts of my brain, in much the same way that it might have been had I been in an accident. After explaining this, I can still be met with the response’ “So, can you feel your legs then?” At which point I have count to 10 and go over it again.
There is a kind of block on the nation’s consciousness in relation to the conceptualisation of disability. If someone is in a wheelchair there is a prevailing assumption they are paralysed. Perhaps it is because paralysis has a much higher profile and people can understand more easily its causes and effects. When people hear the words brain damaged they expect a person to have low intellectual ability, be unable to talk or function in the world. There is a misunderstanding as to the less obvious effects of having an injury to one’s brain.
Considering cerebral palsy is a commonly occurring non-genetic disability, affecting around one in every 500 children born in the UK, I am continually surprised about how misunderstood the condition is. Dyslexia is a relatively common co-morbidity of cerebral palsy. Dyslexia continues to be chronically misunderstood. I can, with some effort, get people to understand that I am physically unable to perform a task. When people see my wheelchair they are able to see why I need help opening a door or reaching for something from a shelf.
When I mention I am dyslexic, comments like “You should use a computer or spell checker” are a staple. My computer is my lifeline but it does not solve all of my problems. I still feel a tinge of embarrassment if I ever have to admit to being dyslexic in a way that I never do when explaining my need for wheelchair access. This maybe because it still carries with it undertones of laziness and stupidity and as it is unseen it is harder to demonstrate. I have searched for ways to best explain it and I would have to put it like this: it is like the sensation of having a word at the tip of your tongue. Spelling to me is, and will probably remain, something of a work in progress, and a slow one at that.
Although there has been much progress in the understanding of disabilities, the hierarchy of disability acceptance still remains, with those with multiple impairments firmly placed at the bottom of the pile.
Anika Baddeley has cerebral palsy