Seeing is believing
Gawking and accommodation"A real deaf-blind person! Watch her move about with ease! Watch her carry on an intelligent conversation!" Megan Jones, who's working on her doctorate, writes in our cover story that "many people are more comfortable relating to me if they can be absolutely sure I am who I say I am." A real disabled person. "I must make myself completely alien to them for them to feel that they understand me." Amanda Hamilton writes that the double-bind of the person who doesn't look disabled forces them to compensate and "pass" as nondisabled and then be viewed with suspicion (or called outright liars) when they say they need accommodation.
Robert Mauro muses on the other extreme: the situation of someone who can never pass and doesn't try: the sideshow "freak."
If there is a tone of the sideshow barker in Jones's sentences, it's not surprising: most of nondisabled society cannot conscience disability unless it presents itself as "alien," to use Jones's word.
The "alienness" of the freaks pulls at Mauro: "Part of me wants to get to know the freaks" -- who, he realizes, are "a whole lot like me." "I have a hunchback. I have lots of big scars." Maybe the freaks have the better deal, he muses. "All my life I had been letting people gawk at me for free!"
Gawking is, in a way, what most of our features are about this time. Even the wacky world of Kevorkian is about gawking. One deeply hidden reason he's never convicted (hidden even from ourselves) may be that nondisabled society is just too fascinated with watching what he's doing to want to convict him. And what he's doing is putting folks who we see as disabled "out of their misery."
Our society, built on nondisabled values and understanding, is convinced seeing is believing. Folks whose very real disabilities are invisible bear the brunt of this conviction. Jones writes that people are more willing to accommodate her "if they can be certain that I am who I say I am, a deaf-blind person. And they are not absolutely convinced . . . until I bump into a wall. . ."
Rosemary Garland Thomson, battling for tenure at Howard University against the view that disability studies aren't a "real" field of endeavor (see our story), focuses on what she calls the "Extraordinary Body." In her 1996 anthology, Freakery: Cultural Spectacles of the Extraordinary Body, she writes that "the freak body represented [to society] [both] boundless liberty and appalling disorder." In recent times, she writes, the freak has moved from the "embodiment of wonder to the embodiment of error." The medical model: cure 'em or kill 'em.
Virtually all public discussion about "freaks" comes from non-disabled people who observe very visible disabilities and muse on what they think they've seen -- not unlike learned society did about "savages" in earlier centuries. Critic Leslie Fiedler's 1978 book Freaks is a gem of this. It seems this is the only way society can make sense of freaks. We use people who look "extraordinary" purely as images, with no thought to the individual person behind the image. Our gawking functions somehow in helping us shore up our own image of ourselves as nondisabled -- or less disabled -- than the freak. Even Mauro does this. But Mauro, at least, has figured out that this is what he's doing -- plus, he knows he has the insights of a freak-manqué.
Society hasn't the language yet to do otherwise. That's part of the job of unsung heroes like Thomson and colleagues: to make society re-think all this stuff.
The disability culture movement will eventually take back ownership of the images.
Ownership is, after all, the problem. It's a nondisabled world out there. They run things. There's a power balance to be maintained. The freaks get the money, but the viewers get to gawk.
Folks whose disabilities are invisible piss off nondisabled folks because the nondisabled folks are expected to pay up without getting to gawk first. They don't look disabled but they expect to be "helped" -- which is the way nondisabled society understands accommodation, since it hasn't yet gotten the part about discrimination and inequality.
Folks are still somewhat willing to accommodate someone who really needs help -- but seeing is believing. If you don't look like you need help, you probably don't.
If you really look like you need help, then we'll give it to you. We won't make you equal, because you can't, after all, be one of us. You are, after all, handicapped. But we will help you. (Or, if the help you need is too difficult, we can put you out of your misery.)
Sideshow freaks don't ask for accommodation; so they don't piss off anyone. They earn their way; we get to gawk. But the power balance never shifts. As Mauro says, the freaks aren't running the show.
A correction: in our last issue, we wrote of Roosevelt's Memorial that "no statue will show him in the wheeled chair he commonly used." On April 24, the New York Times wrote that, "a nine-foot statue at the memorial, however, shows him seated in a special chair he sometimes used in public, with two small wheels visible on close scrutiny."'
No matter. A law passed in May requires an additional statue be added to the Memorial with full depiction of FDR in a real wheelchair.
A woman writes on the Internet that on the opening day of the Memorial, she was driving her power chair down a ramp alongside one of the large statues, "when BAM! my control box slammed into a huge rock in the wall that jutted out more than a foot from the other rocks.
"The rock is several feet off the ground as well," she goes on, "so my front tires had cleared without giving me any warning. The control box and joystick arm were damaged, . . . A blind person could kill themselves on this rock, as it is too high off the ground to be detected by a cane.
"I talked to the ADA guy at the Park Service, who told me that he had the same misgivings about that very rock, but that the designer considered the rock to be a "design element" and [so] nothing was done. ..."
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