Untangling the Measuring Tape by Rob Spirko

When I was a kid, running around with the other kids in the neighborhood, playing war games, I would sometimes have my character sustain a pretty serious injury, often losing a limb. In retrospect, it was kind of weird. It certainly didn’t interfere with the burgeoning “geek” identity I was developing. Looking back, I wondered why I did that, until one day it hit me: back then, I wanted an obvious disability. Something evident at a distance, something that people would understand immediately. If you’re missing an arm, well, you’re missing an arm. If you have to ask people to repeat themselves, if you talk funny when you do that… What do people know about that? If you have to explain why you go off to speech therapy every day after lunch time, you start developing a sense of yourself as different.

Years pass, and you can mostly forget it. People don’t mention it so much. Occasionally, a college professor, with the best of intentions, will ask you in his office if you’ve considered “doing something about your mouth,” something vaguely dental or surgical, because he seems to think that’s the cause of your odd quality of speech. Or later, your dissertation director, again with the best of intentions, will caution you not to disclose your disability in your job letter, because “you don’t want to give them any reason to doubt your ability” before they meet you. (And she’s probably right—people with disabilities are less employed than the temporarily able-bodied.) Someone, your own child perhaps, tries to whisper something to you, and all you can do after that stream of hisses and clicks is look at them helplessly and shrug. You’re made acutely aware, again, that you’re different, and that others can tell.

W.E.B. DuBois, in The Souls of Black Folk, talks about what being marked as different in a racial context does to your psychology. He says, “It is a peculiar sensation, this double consciousness, this sense of always looking at one's self through the eyes of others, of measuring one's soul by the tape of a world that looks on in amused contempt and pity.”

That’s the condition of stigma, that double-consciousness. You know what normal is, primarily because you are not it. The “normal” have the luxury of not knowing. They don’t need to measure themselves by that tape. They know it exists on some level, because they have to reassure themselves of their own normality by holding the tape up to people who don’t fit. If you can hold the measuring tape up to someone else, you never need to hold it up to yourself.

The act of pity means setting yourself up as better than. You can’t pity an equal. That’s why people with disabilities don’t want pity. If a stigma were simply the mark of difference, it wouldn’t be a big deal. We’d all live in our UU paradise, letting our freak flags fly. But a stigma says, “You can pity this person—here’s someone you are better than.”

That’s probably why I don’t mind when little kids ask, “What’s that thing in your ear?” They’re not doing it with an agenda— they’ve just seen this weird thing in your ear, and want to know what it means. It reminds me of when I was small, and saw a man at Myrtle Beach who had one leg. I pointed it out—quite loudly-- to my parents, who felt an appropriate amount of middle-class horror and hushed me up. I was on the verge of walking over to him and saying, “My ears don’t work. What’s it like for you?” Sure it would’ve been inappropriate, but kids can get away with it. They’re still learning how to use the measuring tape. And your hushing them up and hustling them off doesn’t make that tape go away--it only shows them its power.

I try to answer the kids as directly as I can: “I have trouble hearing. You know how glasses are for your eyes? Hearing aids are like that for your ears.” I can’t undo the way we value normality, the way we stigmatize difference. But what I can do, I hope, is give them something of a different measure.

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Rob Spirko teaches English at the University of Tennessee in Knoxville. He and his wife, Jennifer Spirko, live in Maryville, TN, where they attend Foothills Unitarian Universalist Fellowship.