Passing for Normal? How Much Disability is Our Society Willing to Tolerate?

Hello readers, and may I say it is wonderful to be back after what might be the toughest work weeks in recorded history. Thanks to a new, top-tier client, I have been absolutely buried in statistical data and blog posts, but now I’m finally back to tackle a topic I’ve been waiting to write about.

During Martin Luther King Jr. Day weekend, I had the privilege of watching a documentary called Light Girls. If you’ve never seen it, I highly suggest getting access to it on a streaming network, television, or the Internet. Light Girls is about the history of light-skinned black people in our country, particularly females, as well as the “colorism” rampant in many communities. In some cases, lighter skin is privileged because it means you are “more” white and “less” black, or Indian, or Caribbean, or whatever your origin happens to be. But in others, light girls and guys get harassed because they are “not black enough” or “not dark enough”; dark skin is privileged. The documentary also talks about the unique experiences of mixed race people, who are often made to feel they don’t fit anywhere. I have a writer friend, G, who is mixed-race, and she has testified to that in beautiful and heartrending ways.

In no way am I trying to appropriate racial experiences. I couldn’t even if I wanted to; I’m not just white, I’m porcelain. Comes from that fair Irish ancestry, I guess. But as I was watching Light Girls, some of what interviewees said resonated with me as a woman with a disability. For example, a featured professor from the New Orleans area talked about encountering passe-blancs in her lifetime, or blacks who were passing as white. As I absorbed her words, it hit me: how many times in my life have I tried to “pass” for TAB, or look as non-disabled as possible? How many times have I been angry or sad or felt rejected when that didn’t happen?

I can remember quite a few times, like the time I told Mom I wanted to go to sleepaway camp like other kids, but not tell the counselors I had CP. I’d gotten the idea from a book in which a 1940s teen who is blind keeps it a secret at camp. I figured, at least I could see, and if she could do it, so could I.

And how about the time I tried out for a youth theater production, knowing I did well in the audition because it was focused on line delivery and expression–only to find out I didn’t get a callback? The director actually pulled me aside to say, “You can’t move well enough; you’ll mess up the set.” I was the only one of all the actors trying out who did not receive a role.

Or how about all the times I’ve walked into college classes, thinking finally my CP won’t mess me up–only to have the professor request that we write down our basic information on index cards during the first meeting? Or to find out that whoopsie, this class requires going outside to hunt for salamanders, or interpreting statistical information from graphs and Venn diagrams? Ugh!

Believe me when I tell you, there is a big part of me that says, “Screw all that. If the world cannot accept disability, that’s their problem, not yours.” And it is, because our society’s view of disability is for the most part negative. Still, there is a threshold of how much disability society will tolerate, just as there was a threshold of how much melanin would be tolerated in skin. Light Girls interviewees described this in sobering detail. Black people often underwent a “paper bag test” to get into certain organizations or buildings. Anyone with skin darker than the shade of a brown paper bag could not enter certain places, including church. Other organizations forced people to pass combs through their hair to prove it was smooth and straight. (I mean, what the heck? Who DOES that kind of thing to a fellow human being? Well, obviously someone who only sees their people group as human, I guess).

Now of course, we don’t have signs on our doors that say, NO ADAPTIVE EQUIPMENT ALLOWED or AMBULATORY PERSONS ONLY (although sometimes we might as well). But think about it. Let’s say you go out to your favorite coffee shop, and you encounter two people in wheelchairs. The first is sitting upright, having an adult conversation with his or her companions, drinking and eating neatly. The second is not sitting up straight, may need to be fed, and is speaking loudly and unintelligibly, or not on a typical level, if at all.

Which one looks “more disabled?” Which one is getting more stares and negative feedback? Which one would the TAB population rather be with? Ten to one, the second person is the one less tolerated. True, it’s often not obvious. It’s not the same as marching up to a black person and saying, “I don’t allow Ns in here.” But it’s just as damaging, and it’s crap.

Kathie Snow talks about this–often more intelligently than I could–using the term “disability hierarchy.” As with skin color, disability hierarchy happens when less severe disabilities are privileged over more severe or noticeable ones. Both the TAB and disability communities do it, and it often starts unconsciously in childhood. Let’s say for instance, Kayla is TAB and her little brother Logan is autistic. When people make fun of him or speak gloom and doom over him, her response is, “Where do they get off? It’s not like he’s retarded!” Not only is Kayla using the R word, but she’s also saying mental disability is somehow “worse” than her brother’s form of autism. But because she’s a kid, she may not know better. She just picked it up from the environment.

Or what about privileging ambulatory people over those in wheelchairs, even if they have the same disability? I’ve heard this before. People have told me, “It could be worse. At least you’re not in a wheelchair.” I absorbed that. Sometimes that message made me feel guilty, like when I had to ask for a wheelchair on a guided tour or tough terrain. A little voice in my head would say, “You don’t really need this and you’re effectively stealing from people who do. Everyone feels sorry for you.” And while those messages may not be true, it is true that people in wheelchairs are more likely to be defined by disability than those of us who can walk.

I say it’s time to stop this whole thing, to tear down the hierarchy. People are people, and disability should be irrelevant. No, I don’t mean irrelevant in terms of safety, but in terms of human relations. Stop effectively saying a person with clear speech is better than one with an impediment, that a person with Asperger’s is better than a person with Down Syndrome. Heck, we even do this in therapy! We say, “Okay, James, when you can walk to this line, you will be more independent and one step closer to getting rid of the wheelchair.” What we often mean is, “James, walk to this line to prove to me you are one step closer to my definition of normal.”

What the French?

Stop it, people. Stop drawing lines in the sand and expecting PWDs to cross them before they fit into your world. I mean it – put the pencils away. We say disability is not a civil rights movement, that we don’t mistreat people with disabilities. But at the same time, we constantly shame or exclude PWDs for something they didn’t ask for and can’t help–just like we used to do with skin color. Yes, the civil rights movement is here. Listen up. We’re tired of trying to “pass for normal” to please you, so I suggest you take your normalcy goals, preconceived notions, and other equivalents of the paper bag, and go home. Otherwise, we may all lose our marbles.

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