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Photo description: Two people talking one says ‘Ableism the other responds, ‘WTF is that?’

Twice recently I have tried to explain to non-disabled people, nice non-disabled people, about the lived experience of disability. I made it clear that I wasn’t talking about my disability or about accessibility or about physical barriers. I was talking about the social and interpersonal experience of difference.

No one talked to me about this when I became disabled. I was talked to about  wheelchairs and curbs, door widths and tall toilets, reach extenders and elephants feet. All important things. All things I needed to know. But no one talked about the other stuff, the stuff that would come to be the most difficult for me to manage. Now, let’s be clear, I’ve been gay and I’ve been fat my whole life, so when I became disabled I wasn’t unfamiliar with prejudice and social discrimination. However, I wasn’t prepared, in any way, for the experience of being disabled. It’s like when disability became another intersection on my journey through life I should have noticed that the light was flashing yellow in warning.

But I had no warning.

Why did I need a warning? Well because the experience of the loss of both adulthood and personhood was dizzying. Sitting down was one thing but the tumble from respect to disregard is a really, really, big fall.

In both circumstances, when I was discussing the social aspects of disability, I wanted the individuals to understand that any policy regarding disability needed to understand the complex and often hostile context in which we live our lives. The Supreme Court of Canada may state, for example, that all lives are worthy, but that is a meaningless and hollow statement for many disabled Canadians who deal with prejudice and hate and social or physical violence on a day to day basis.

Nobel sentiments, even when coming from esteemed and august institutions, do not translate into anything meaningful unless that sentiment translates itself into behaviour. Action is necessary. Even if people agree with ideas of ‘love’ and ‘value’ and ‘worth’, the silence and inaction are the food and sustenance of hatred. So as I tried to explain how existing with alternating states of hyper-visibility and complete invisibility can affect the soul and spirit, I could see what I was saying was seen as whining and complaining. When I pointed out that the baseline level of violence for people with disabilities is extraordinarily high and that no one much cares about that fact, I could see that I was being seen as a child pleading for mother’s attention.

Disability and the prejudice that surrounds it just doesn’t get any traction. Take a look at the word ‘ableism’ and notice that the only people who know the word are those within the disability community. No one ever uses it outside doors with ramped entrances. When I use it in presentations, I’m asked to define it. People’s eyes glaze over. It isn’t like racism and sexism and homophobia – because we aren’t even valued enough to have despicable prejudice and violent behaviour acknowledged in language. We are objects. We are things that don’t matter. Others may bruise us but our disability will be made the cause. We are vulnerable, and the cause of that vulnerability will always be seen as our existence – no one suggests that vulnerability, for people with disabilities, is caused by the existence of bigots and bullies and, simply, bad people.

So, conversations about disability and prejudice with people who are outside our small community are difficult. We don’t have language that telegraphs meaning … the words racism and homophobia and sexism … have power. Those words can cause action and reaction and change. I don’t want to suggest that those who experience different kinds of prejudice have it easy, that there isn’t massive work that needs to be done to combat racism and sexism and homophobia. I’m simply suggesting that we have yet, as a minority, come to the point where language acknowledges our existence as an oppressed community and further where language has stubbornly refused the words we choose to express the experience of oppression.

How do we have conversations about things like the value that we find in our lives if we can’t do that against and understood background of social discrimination? How do we talk about our struggle to be seen as people, actual people, equal to other people when there is no acknowledgement of our history of oppression. When looked at with eyes of pity it’s hard to be heard by ears willing to listen.

Was I successful in these conversations?

I don’t know.

Only action will tell.