I have a problem.

I think I’ve had it for quite a while, but I don’t think I’ve really acknowledged it to myself or to anyone else until now. Let me give you a three examples and then I think you’ll understand.

We are having a ‘see you soon’ gathering at my next team meeting for someone going on leave for a few months. I am in the liquor store picking up a couple bottles of wine, not to consume at work of course, but as gifts. I’m pushing myself carefully not wanting to knock over display towers. A passerby makes a comment about using benefit dollars to buy booze and about how he, as a taxpayer, resents my use of my money in that way. I spring to my own defence and say that I am fully employed and that I am, like him, a taxpayer.

Sitting in a food court holding the table for Joe. He eats much more slowly than I do so he gets his food first and then I get mine. I still finish first but there’s not as much of a gap. Anyways, I’m waiting. Another anonymous comment comes my way about being fat and lazy and in a wheelchair, about how I let everyone serve me and the burden I’ve become. Apparently if I rise up and walk, I’ll become thin, productive and those around me won’t secretly wish I’m dead. I immediately make it clear that I push myself where ever I go and I participate actively in all my relationships.

It always surprises me when I’m out with Joe, Ruby and Sadie that sometimes people see only me and not me in relationship to the people I’m with. We were all, together, in a line up, getting tickets to a movie, and a comment is made about how sad it must be to be alone all the time. I rear up and say, quietly because I don’t want the kids to be involved in another scene, that I’m not alone and that I’m with the people I’m with and, for God’s sake, shut up.

You see the problem don’t you?

In my mind I’m going after ableist and disphobic assumptions about people with disabilities. In my mind I’m educating people about who people with disabilities are and the lives we lead.

But that’s not what I’m doing is it?

Every defence that I use, buys into their measuring stick about what it is to be a person of value.

I work. Okay, big whoop-de-do for me. My response says that I agree with how they determine who should spend what on what and that I have the right to spend my money the way I want because I earn it. Well, I don’t agree. I don’t think it’s anyone’s business to tell anyone else how they should spend the money they have no matter how it comes their way. So while challenging stereotype I’m reinforcing hierarchy.

I can physically push my chair. Okay, hold a parade in my honour. My response says that there are lazy people with disabilities but that I’m not one of them. I don’t belong to THAT CLASS of disabled people. I am physically strong enough and have the dexterity to be able to push myself, at my weight, in my chair. Well, I don’t think that ‘lazy’ is why people are in wheelchairs. I think that’s a stupid notion and my response should tackle that, not reinforce it.

I am married and have relationships. Okay, ain’t I special? My response says that there’s something about me that makes me able to have relationships and that by having relationships, I have more value. Well, shit on that. I know people with disabilities that for a variety of reasons are not in sexual relationships and have little in the way of social relationships. Leaving out a discussion of why that may be, the question is, does that make them less worthy of respect? No. It doesn’t.

I don’t know why I want the respect of people who are ignorant or mean towards me. I don’t know why I feel a need to protect myself by saying ‘I’m not one of those kind of disabled people, you know the kind that don’t deserve respect and welcome.’ My inner disphobic self maybe peeks out at moments like that.

But, and this is not a defence, I don’t know how to respond any other way. I don’t want a discussion with someone who said something with the purpose of hurting and degrading me. But I also don’t want to justify, in my response, their measure of value and of worth and of humanity.

I have a problem.