[Monograph for university course 2001] The Forbidden Body

[I wrote this before I had spent much time on the internet and found that there was a lot of writing by people with disabilities in cyberspace. If only the internet had existed when I was a teenager. :-) ]

My pocket Macquarie dictionary defines the word `disabled’ as “to make unable; cripple, incapacitate”. However as a person with a disability you soon learn that this definition is incomplete. You soon learn that there are definitions that are unspoken, unwritten, and it is these definitions that take precedence. You learn that being `disabled’ in the eyes of the world means more than any dictionary can define. Being disabled means being not good enough, not normal enough. Being disabled means you are too much, too dependent, `a fire hazard’. Being disabled means that you must put up with sub-standard treatment in all areas of life. It is more difficult to find a job, a place to live, friends to socialise with. You must settle for a life that is reduced to what the able-bodied community will allow you. But above all, being disabled means being silenced. In a world where every little detail of life is held up to scrutiny by the media, and there are more and more opportunities to learn about lives other than our own, the lives of disabled people as we live them are disturbingly absent.

There is plenty of information about disability available, page after page, and book after book written about people with disabilities, all written by able-bodied professionals, or able-bodied parents of children with disabilities, or able bodied ethicists, but very little of it written by people with disabilities themselves.

We are forbidden to talk about our lives as people with disabilities, yet at the same time, people expect us to talk incessantly, justifying our lives and explaining what is wrong with us, and justifying the assistance that we need, but never really wanting to know anything about who we are. They suck pieces of knowledge out of us, the facts about our disabilities, about what makes us different to them out of us, like emotional vampires, voyeuristic, never wanting to get to know us as people. We are forbidden to talk about our lives, we are too much reality.

The experience of being disabled is very rarely written about with force, and power, and passion, and with the recognition of our physical reality as being an acceptable one, and not something that needs to be `cured’. It is usually written about as a pitiful, pathetic way of living, and one that should always be exchanged for something `normal’. That is, `normal’ as it is designated by others who are looking at you from outside of your life and experience.

The most difficult thing about being disabled is not the physical pain, or the barriers to living life. The most difficult thing to deal with is other people’s perceptions, people’s barring us from existence, assuming that we are not quite human, that is what hurts the most.

Human beings fear the unknown, so that is why those of us with disabilities must tell our stories, all of our stories. The good, the bad, the painful and the difficult, so that we can know ourselves, and others will know us, and therefore there will be less fear. People’s perceptions must be changed, and they can be best changed by those of us who live on the outside, who are not allowed into the charmed circle of `normal’ people, we who see what others cannot or will not see. We can see what others’ attitude can do to us and to themselves. The usual ways of thinking about disability need to be challenged, and in being challenged, need to be changed. Human beings grow through evolving and changing, we are not meant to stagnate in one way of being. Our lives, our attitudes and our progress are not meant to stay the same.

It may be acceptable for others to define how they see us, but it is no longer acceptable for them to define who we are, or how we should see ourselves. That is a definition that only we who live with the reality of being disabled and the challenges this brings can give. It is only we who can define who we really are. And this definition must be taken as real and valid. As people with disabilities we have to demand the right to define ourselves, as WE see ourselves, and not allow who we are to be defined by how others see and react to us. We must show the world that the way they perceive us is only THEIR PERCEPTION of us, it is not who we really are, it is not what we can become.