I have a prosthetic eye. I have had it since I was about a year old, before I could speak. I don’t know what life would be like without it. More importantly, I don’t know what my life would be like with two functioning eyes.
According to my interpretation of the Americans with Disabilities Act, I don’t have a disability. It doesn’t substantially limit my life activities in any way. I can drive just fine, although I find parallel parking challenging. I don’t like people walking to my left because I have to turn my head farther to see them. I’m not particularly good at sports, but I doubt professional baseball was in my future regardless. Other than going to 3D movies, which aren’t in vogue anymore anyway, there’s really nothing that I can’t do that I wish I could.
That’s not to say my handicap hasn’t affected my life: It has, quite a bit, through the judgment of others.
Let me get the language out of the way. I consider myself handicapped, not disabled. I don’t like the word “disabled” because, for me, it places the focus on the idea that part of me is permanently broken. While that’s true, I’d rather that the focus be on me, not my brokenness.
Most etiquette guides will recommend that you use “disabled” instead of “handicapped,” and I offer Arika Okrent’s excellent historical explanation about this. Like Okrent, I have a background in linguistics and approach the issue from that standpoint, but I sympathize with people who feel differently.
Call me “handicapped,” please. In general, if someone doesn’t specify a preference, I recommend you call others “disabled.”
As a parent of a soon-to-be third grader, a teacher of high schoolers, and an adult, I interact with three basic age groups of people. Each age group acts differently, and the evolution of that behavior reflects how we treat people who are visibly different.
Personally, I don’t mind this question. If people are going to be pre-occupied with my handicap, I’d rather they just ask about it openly and get it out of the way. I know that many persons with disabilities would rather not talk about them, and that’s fine.
As someone with a public-facing job, it’s inevitable I’ll be asked. I’ve decided to embrace this role, to be an ambassador to the able-bodied.
When I tell children that it’s a plastic eye because my real one stopped working, they’ll ask what happened (my retina broke, and the doctors were concerned it was cancer), whether I can take it out (yes, but I’m not going to for them), if it hurts (no), and if I can see out of it (no).
At some point, a well-meaning adult will swoop in and tell the child not to bother me. If the child is just staring, they’ll get told by that adult to stop staring.
Usually, I will be ignored by this adult. Sometimes, they’ll apologize to me. Rarely, they’ll check to see if I’m okay with being interviewed.
This is one of the key components of ableism: Treating the differently abled as if we’re statues, or curiosities on display. The phrase inspiration porn refers to the objectification of a differently abled person. There’s nothing wrong with looking at any other person, as a human, and saying, “Hey, that person succeeded, maybe I can learn from them.” Inspiration porn, though, carries an additional undertone that someone’s disabilities are so debilitating that it’s a miracle they can even shop for groceries, let alone win a marathon.
When adults bother to ask, I’ll explain that I don’t mind talking about my handicap, personally. Others do mind, though, and that’s okay, too.
A key message here is: We are individual humans. We have the same breadth of willingness to talk about our bodies that anyone else does. We are not a collective of curiosities with a single brain.
My high school students’ reactions reflect a bridge in the evolution between childhood and adulthood. They’re more cautious about asking questions, and more likely to stare with that sideways look that tells me they’re wondering.
When they do ask questions, they tend to more complex: Why didn’t I sue the doctors when it turned out there was no cancer? (Uh, I was one year old.) What’s it shaped like? (A mix of a portion of a sphere and a tricorn hat.) How can I drive? (I’m a mathematics teacher. There’s a long answer.) They often have stories about someone they know who has a prosthesis of some sort, and talking to me helps them better understand that situation.
The only time I can remember adults asking me about it is when I’ve opened the door myself. For instance, on multiple occasions, I’ve mentioned at a teacher staff meeting some incident or other of a student talking about my eye, and that’s led to a teacher saying, “Hey, now that you mention it….”
If I honestly thought that adults weren’t noticing it, this wouldn’t bother me. But I know better. I don’t know for sure how many jobs I’ve lost in large part because I “look funny” at the interview, but it’s not zero. Perfectly rational adults express surprise that I’m allowed to drive. When I make jokes about it, they get quiet and uncomfortable.
The curiosity is natural. The awkwardness and kid gloves treatment is not. If you’re not sure how to act around someone, look up some etiquette guides. But remember: we’re all different. Any etiquette guide is going to fail for some people.
Here is one of my father’s favorite stories about my youth. I was a toddler, out in public somewhere. A woman was staring at me, and I reached up to my eye and spun it around. She turned green and didn’t look at me again.
Talk to me about it, fine. Treat me like a person who happens to have a prosthetic eye and ignore it, fine. Just don’t stare at it.
Photo credit: Getty Images