Thrown Out of the Citizen Ship: Canada.com post

The most often asked question I get, as someone with a disability, who works with others who have disabilities, and who travels extensively to lecture and consult is probably fairly easy to guess. "Which country is more advanced in their service provision to people with disabilities?" I find that this is a very difficult question to answer for a simple reason:

It presupposes that people with disabilities are a citizen of any country.

As odd as that may sound, I think it an accurate statement. I do not see people as disabilities having 'rights and freedoms' in the same way as do other citizens. I do not see people with disabilities as having an 'expectation' of being part of the social contract that typical citizens have of one another - respect, fair play, or even simply, decency. I simply don't.

Consider the world of those with intellectual disabilities. Many live within systems created by governments to provide support for them. These agencies become worlds unto themselves. Suddenly rooms full of non-disabled people, acting without the bother of consultation with those with disabilities, sit in rooms and write policies. Polices that affect life, liberty and the pursuit of happiness. In many parts of the world, in agencies all over the world, people with disabilities have their civil liberties determined by people they never elected; by people, often, they've never met; by people who's opinion about their lives, their morals and their relationships count more than the congregate wishes of those in care.

The history of people with intellectual disabilities is replete with institutionalized, government approved, violence. Forced segregation. Forced sterilization. Forced subjugation. Polices were written which allowed their skin to be shocked with cattle prods, their confinement into little tiny 'time out booths', their family contact limited, restricted and even forbidden. Policies were written that disallowed loving relationships, dating and marriage outlawed, homosexuality soundly and horrifically punished. Ah, but that's passed, you might say.

Well, firstly, not everywhere. Well secondly, where this has passed into history, it passed into history without apology. The need for electric shock then is not challenged by the fact that there is no need for it now. But, then, people with disabilities are used to living without apology. But even if those horrid practices of the past are tucked away in time, they cannot be tucked away in living memory, the fact remains that the civil liberties of people with intellectual disabilities are determined, not by governments, but by people who people organizations. Give a person a pen, a piece of paper and power and then watch what happens.

So, when talking about people with intellectual disabilities I answer the question: "Where do they get it right?" By telling the truth. I have seen service done well, really well. But it's odd. It's an agency by agency by agency determination, not a country by country. One agency in one part of a province, or state, or shire, may provide extraordinary services. Another agency, located a mile away, may provide a crushing, controlling kind of care. A couple may be allowed to love here, but be separated there. A person may be able to challenge staff opinion here, but be punished there. A person may have the right to risk here but may be forbidden any attempt to recognize adulthood there.

For people with physical disabilities, this is true, but in a different way. Other people determine our access. Other people determine our ability to transport ourselves. Other people, sitting in rooms, determine even, oddly, if we have a disability they wish to recognize. I went to be assessed to see if I would be allowed to use the WheelTrans system here in Toronto. I had to place myself in the hands of a person only four days older than sperm, who looked me up and down and, in a disinterested fashion, made me present my disability to him. I feared giving wrong answers. Was there a right way to be disabled? I understand the need to determine eligibility - but does it have to be done with suspicion and humiliation as was the experience for me and with superiority and arrogance from the kid with the pencil?

People with disabilities are the ones who are always at the end of the finger of blame when it comes to public spending - and therefore end up at being at the end of the fist of both government and neighbourhood bullies. On my travels I meet people with physical disabilities who no longer feel free to use their own community. They no longer feel as if their citizenship is valid, their participation encouraged, or their presence a welcome aspect of diversity. Tell the truth, when people use the word 'diversity' they don't mean us. Because, I realize, that 'All doesn't mean All' ... at least hardly ever.

People with physical and intellectual disabilities are the ones that face public brutality with little in the way of concern. The idea of a hate crime against a person with a disability is almost laughable. A tiny little search of newspaper articles about violent crime against people with disabilities will find that it's on the rise. A tiny little search of media representation of people with disabilities will find that negative stereotypes are on the rise. A tiny little conversation with a person with a disability will tell you even more - we are fearful. Fearful because crimes against us are not seen as serious social issues. Fearful because victimization of those with disabilities continues unabated. Fearful because the media, and celebrities, and comedians - see us as wonderful targets for bigotry, for stereotype and for mockery. Fearful because we've always been other, seldom been simply another.

Fearful because our citizenship doesn't matter.

We are not Canadians.

We are not British.

We are not American.

We are not German.

We are not ... spin the globe, put down a finger.

The loss of citizenship, the loss of the right to participate in the great social contract is a frightening prospect. I believe that people fear disability, not because they might have to roll around a bit, but because they don't want to be lose their status, their standing and of course their citizenship. I believe that people with disabilities, the world over, can relate to feeling as we are meant to feel - unwelcome.

A long while ago, I wore I bright shirt. I seldom do - following the rule that fat people wear dark colours - and an elderly woman tapped me on the shoulder and said, 'You shouldn't wear yellow, because when you wear yellow, we can see you, and we don't want to.' I felt hurt and shamed by her remark.

But you know what, I just came back from a three week tour in the United Kingdom, where the cost of disability is a constant theme ... and I wore yellow two days out of three. 'See me,' I thought, 'damn it, see me.'

They may not want to see us. They may not want to include us. But we are here. We are staying. And though our governments, our carers and even our families may have lost sight of the fact that we are, and will always be equal citizens. I've not yet met a single person with a disability that has forgotten that ... and as long as we remember, we can fight, and as long as we can fight, we may one day win.