If there’s one statement that makes my head hurt and my skin feel weird, it’s this: I say something along the lines of, “By the way, I have Asperger’s Syndrome.” They say, “Really? I can’t tell! You seem so normal.”
You seem so normal.
The first thing I always want to say, whether or not I do, is “Yeah, well, trust me I’m NOT.” And I’m always surprised they think this. I shouldn’t be–when others don’t see you as having a giant DISABLED stamped across your forehead, the possibility never crosses their mind. I spent the first semester of sophomore year humming and banging my head against the wall of my first block class. My classmates noticed–some of them. Some of them, not expecting that behavior in the middle of honors English, didn’t. Those who did notice did not make anything of it–or if they did, wrote it off as me being rude, unfocused, and arrogant, to say nothing of socially awkward and easily forgettable–my assigned high school role.
The implicit assumption is that serious disability only presents in those fucking retards down in Lifeskills, and since I was the best student in the class and fully integrated, I couldn’t be disabled.
So the first problem with, “But you seem so normal!” is the underlying set of assumptions about what disability is and looks like.
Now, I know some people will argue that Asperger’s is not “serious” enough to count as a disability, let alone as a part of the Autism Spectrum. Because I’m nothing like those…people. If, of course, they are considered “people” at all. I don’t smear feces, scream when something goes wrong, or spend all day stimming. I can read, write, and count–all quite well. I am discovering that I can take care of myself and live independently. So, in a sense, these skeptics are correct. I am not Intellectually Disabled. I am High Functioning in the sense that I can live independently. And these are not facts to be neglected.
Yet this is irrelevant. I may be less impaired than someone–that doesn’t make me any less disabled.
And why is that? Because disability, as opposed to impairment, is subjective. It’s a socio-medical construct. Impairment is objective–I can remember to take my meds, I can’t manage my banking by myself. Disability is when impairment and culture meet. We discussed this at some length today in philosophy. Blindness, for example, is an impairment–you cannot see–but also a disability–our society values sight, is based on shared visual experiences, and a blind person is cut off from this. But it does not have to be this way. It is perfectly possible to function just fine without sight–I know several people who do.
So. Disability is a social construct, and is not synonymous with severe intellectual or physical impairment. But “disabled” is often used to mean someone who cannot live independently. This is certainly a disability in and of itself, a definite impairment, but it is not the end-all-and-be-all of the reality of disability. Independent living as a goal in life is culture-specific. There is no universal law saying it is best for everyone. There is also no law saying that someone who can live independently is not disabled.
This, however, goes contrary to many people’s instinctive beliefs. Thus, when faced with someone who can live independently, who is not obviously impaired, they are confused. This person is not disabled! They seem so normal…
And part of this is because disability can be, usually is, subtle, and not easily recognized. And part of this is because being normal is, evidently, the goal. And to some of us, this is problematic. Not because we can’t be normal, but because why should we have to be?
Diversity, even in ability, is essential to the health, survival, and evolution of any group. There is no golden tablet saying that everyone needs to know and do and want the same things and perceive things the same way. Too often, normal is used in place of correct, and this simply isn’t true. Take sight as an example again. We assume that everyone’s visual acuity and color perception remain stable over the course of a day, that the way most people see something is the right way, that we are supposed to be able to see the individual leaves on trees. And that is how it is for most people. That doesn’t mean it’s right. Someone in my philosophy class said that creatures who couldn’t see couldn’t survive, didn’t evolve. That’s flat-out wrong, and it raises troubling questions of eugenics–we aren’t fish being bred for certain qualities. We are humans, massive bundles of diverse attributes and abilities, and it is generally accepted that there’s more than life to surviving, or at least more than one way to survive.
Nonetheless, a great deal of the popular attitudes towards disability seems to stem from this valuing of the normal. Another way this shows up is by referring to a disability as “mild.” I know a girl going to Smith who has CP. Yes, it is “mild.” My Asperger’s is a “mild” form of Autism. When I say it is “mild,” I mean that I am less impaired than the students I work with. But I am still impaired. It is still a disability. All too often, “mild disability” means “it’s not real, not serious.”
And what is the sole criteria for “mild disability”?
Looking normal.
Perhaps there is a second criteria. If there is, it seems to be that the disability is “easy,“ whatever the hell that is supposed to mean. But let me tell you that for some of us, there is nothing easy about not having the right words you need for a situation, not being able to sustain eye contact, about talking and walking and interacting and managing yourself. Just because something looks easy doesn’t mean it is. Or, to return to my thesis, just because someone looks normal doesn’t mean that they are.
So the next time someone tells you they have a disability, maybe reconsider what you will say.
Julia Bascom’s “But You Seem So Normal!” appears here with her permission. Julia currently blogs at flashback dream sequence.
Julia Bascom on 07/5/10 in featured, Society | No Comments | Read More
