Ableism is getting a lot of attention lately. It was defined in 1981 as “discrimination or prejudice against people with disabilities.” Before that, it wasn’t even a word. I suppose that’s some indication of how much it was discussed. I’m glad it’s being addressed with some ferocity today, though. It’s the right thing to do. And sure, I spend time thinking about the injustice of ableism now, but you want to know the uncomfortable truth? I didn’t start thinking about it very seriously until it affected me. Well, crap.
I’m losing my vision to a genetic eye disease. I figure I’ve got about five years of vision left before I’m blind. The physical loss of sight is gradual, and as such, isn’t shocking. Appalling, but not shocking. There is one shocking aspect of this process though- society’s perception of people with disabilities. And the worse my vision gets, the more rankled I am by the misconceptions and pervasive attitudes toward blindness. It’s pretty negative. Think Mr. MaGoo.
Want to hear the worst part? I am not getting it right either. I don’t treat everyone the same, do I? Well, no. I am less engaged with people who I believe are different from me in ways that challenge my sense of self. It’s a sobering realization. My behavior isn’t aggression- it’s more like avoidance. Am I making effort to include people different from me? Eh-not often. Shouldn’t I know better, being a person with a visual impairment? You would think. The fact is, I don’t fit neatly into the category of one who discriminates or one who is discriminated against. It’s more fluid than that. It’s complicated. But okay, isn’t this what I’ve been saying when it suits me? That, though I have a visual impairment, I would rather not be labelled? That I don’t fit into one category? That I will not be reduced in the eyes of society to a two dimensional conduit of disability? That I’m a person, dammit? But I can’t be on both sides of this argument. If I’m a person who can’t be boiled down to a disability, neither am I a person who can be summed up as virtuous on the subject of ableism. We’re all human. We marginalize those who are different and distance ourselves to stay emotionally comfortable sometimes. And we change our definition of “different” never to include us. How convenient.
I’m not insinuating that it’s intentional, exactly. It’s a learned way of coping with insecurity, right? It’s the “we” vs “they” game we all play. “They” are the people who are different from us in ways that threaten our preferred sense of self. “We” are, well, us. We never put ourselves in the “they” category, because “they” lose. And we don’t want to lose. No, thank you. We will say “we.” In fact, we will happily rewrite the rules of the game and the definitions of the groups to ensure that “we” stay “we.” Never mind that it’s inconsistent and um, mean.
But small children don’t behave this way. Through inexperience, they hold some wisdom. They are open and accepting in ways that reduce us to tears. Right? It’s later, through experience that we become self aware and learn to form protective groups. Playground politics. And we are still doing it. We form adults cliques, we judge based on appearance, we exclude, we marginalize, and we hide behind, “I can’t really relate to them.” It’s okay not to relate. The conceptual wrong is in equating relating with respecting. The reality is that a seemingly innocuous, “It’s not happening to me, so I’ve never really thought much about it before” is the gateway to ableism, and these conceptual wrongs spawn unjust actions.
Five years after my diagnosis, I sat in a class at university with a woman who carried a white cane. I never spoke to her. I thought about talking to her. In fact, I’m still thinking about it- with deep regret. But she scared my sense of self and I was nervous I would say the wrong thing. My behavior came from a place of self protection. It wasn’t aggressive, perhaps, but it was selfish. I was a less visually impaired person, avoiding a more visually impaired person, even with the knowledge that I would, in a few years, be in her position. She was “they.” Now I am. So I quickly redefine my parameters to make me “we.” Really? Gah. Not my best.
Here’s my sobering reality. The very thing I rail against in my low vision world, the assumptions, the categorizations, the uncomfortableness and lack of inclusion I sometimes feel, I catch myself doing toward others. And if you think you don’t ever do it, you probably aren’t watching yourself very closely. To which group do I belong? Am I a person with a disability or a person who discriminates? Uh huh. We are all people, and we all live on the same sliding scale. We all have different challenges, and even our challenges are continually changing. With my disease, I have some power over whether my disability is obvious. In a dim restaurant-it’s obvious. On a bright morning over coffee? You would never know my vision is crap. This won’t last as I lose more vision, because life is fluid. You are aging while you read this. My compromised retinas are burning out while I write it. Our bones are becoming more brittle. We are all one accident from paralysis, and one test result from a thudding diagnosis. And if you don’t have a disability now, you either will someday, or will die in the attempt. We aren’t living such different lives from one another, we’re just switching places and taking turns. Our young versions are getting it right, intuitively. Maybe that’s why their behavior stirs us, making us proud and ashamed.