My Mum wants me to participate in an awareness program started up by the Cerebral Palsy League of Queensland. The idea is to come up with a video or 600 word statement about how I do indeed cope with a disability, the challenges I face and how I get past them. I can see the merit in such activities and will probably submit one and use the following as a template, but the big wigs will hate it because as usual I am brutally honest and I doubt that any of them will like what I have to say.
I have unusual relationship with my disability. Although I have and will always be disabled, I don’t consider myself as disabled until it stares me right in the face. Yet it has and will continue to influence every one of my life decisions. It is almost as if at times I get the feeling that the wheelchair is an enormous pretence and I can get up out of the wheelchair whenever I feel the need…. only I can’t. Perhaps it is because I live most of my life via cognitive pursuits, I’m in academia and aside from that I engage in relative hobbies both by design and intent, whether that be reading books, listening to truckloads of music or consuming television shows by the dozen. Therefore it is not apparent that I’m disabled until it becomes blatantly obvious, like when I need to go to the bathroom, or want to go to bed. A giant neon sign emerges from the corner of my brain screaming ‘CRIPPLE ALERT’ in a mocking fashion. Think of it as my own version of truth serum, it never ever tastes nice.
As a general rule I have the same attitude regarding the ‘disabled community’ and the organisations and participants who comprise this so called ‘community’. Really the only thing holding it together is that they’re all associated with an illness. Sometimes a few participants can have more in common such as age, location, one or two hobbies, or most often the same type of affliction. However, the realty is that just like in life these commonalities do not actually bind people together. The truth is that contrary to popular belief disabled people can be dickheads too, no matter what the stereotypes suggests. In fact the most repugnant person I have ever met shares my disability. He or others might share the same opinion of me. Why should that be any different because I occupy a seated vehicle for 16 hours a day?
The trouble with the ‘disabled community’ is that it is bound by negativity. Such is the nature of the beast I suppose given society generally equates ‘disability’ with negativity and condescension. However, for the majority of the time these groups perpetuate stereotypes with their deficit attitudes, rather than empowering individuals with choice. Too often criterions are developed based upon these defects. When applying for funding or services one always has to paint the most negative picture. For example when filling out such forms it is not wise to point out that I am university educated in a highly specialised field, articulate and highly independent. Instead I have to point out that I can’t take a shit on my own, can’t get myself out of bed, nor maintain my own personal hygiene. Even then my application gets declined because I don’t have a disabled sibling, am not homeless, nor am I destitute. I get penalised because I am actually an active participant of the general community. As a consequence ‘the disabled community’ adopts the same negative attitudes, either providing government with sob stories in order to illustrate their plight, or using ‘the cute factor’ by putting a kid in the media with a goofy grin and puppy dog eyes to get attention. The only attention they do receive is when something bad happens or when its appeal week for many local charities that infest the media, preaching stereotypical ‘case studies’ rather than empowerment.
So its no wonder I dislike mixing with other ‘disabled’ people. Sure, I do like some disabled people just because they are genuinely nice people with common interests and common motives. Not just because they are in a wheelchair or lack the same amount of oxygen to the brain as I do. Throughout my life people have always reassured me without prompting that they liked me for me and not because of my four wheels. I have the same attitude with others. I refuse to associate with people who want to talk about how many times they spasm a day, or which carer agency provides clients with a better quality of service.
Growing up in Adelaide I was constantly surrounded by a group of 8-10 people with Cerebral Palsy. Sure we had the occasional good time both in and out of school but retrospectively the only three things we had in common were our geographical proximity, our age range and our disability. Perhaps that’s what I needed at the time, but over the last decade I’ve moved beyond that. I am no longer disabled, I am just a young academic, who’s highly cognitive and nothing more until the neon sign reminds me otherwise.