[GUEST POST] Special Needs in Strange Worlds: Sarah Monette on Albinism
Sarah Monette was born and raised in Oak Ridge, Tennessee, one of the secret cities of the Manhattan Project. She studied English and Classics in college, and have gone on to get my M.A. and Ph.D. in English Literature. Her novels are published by Ace Books; She also has a collaboration with Elizabeth Bear, A Companion to Wolves, from Tor. Her short stories have appeared in lots of different places, including Lady Churchill’s Rosebud Wristlet, Alchemy,Weird Talees, and Strange Horizons. She collects books, and her husband collects computer parts, so their living space is the constantly contested border between these two imperial ambitions. Her recent book, The Goblin Emperor, has been published through Tor books under the name Katherine Addison.
When I moved to Madison for grad school in 1996, one of the first things I organized was an appointment with an ophthalmologist. I’d had bad eyesight all my life, and I expected to need a letter from an ophthalmologist to get my driver’s license, since I did–and still do–routinely fail the DMV’s eye exam. (As it turned out, I failed and they gave me a license anyway, which I find honestly kind of alarming.) So I went to the University of Wisconsin-Madison’s Department of Ophthalmology. They dilated my eyes, the ophthalmologist (who I later learned was the department chair) took a look, and said, “Wow. You’re blonde all the way back, aren’t you?”
And that’s how I was diagnosed with albinism.
I was twenty-two, and I still remember the relief of knowing I wasn’t being a hypochondriac or making stuff up. I felt like light hurt my eyes because it did. And the relief of how calm and matter-of-fact the ophthalmologists and staff of the Department of Ophthalmology were, and have continued to be. I’m unusual (I see a doctor in the pediatric ophthalmology clinic, because his specialty is vision problems, like albinism and strabismus, that manifest in childhood), but they’ve never made me feel like a freak. And the waiting room shows Disney movies.
Technically, it’s still a provisional diagnosis, since we’d need a DNA test to know for absolute certain, but I have the requisite characteristics for albinism at the mild end of the spectrum: I’m lighter in complexion and hair-color than any of my relatives–the only blonde in a family of brunettes and redheads–I have nystagmus, underdeveloped foveas, and there is no pigment in my retinas, which makes me, like all people with albinism, painfully light-sensitive.
And, of course, I’m blind as a mole.
At that, I’m lucky. My albinism is mild: I have pigment in my hair and irises and skin. I’ve been mocked for my poor eyesight, and I got teased as a child for being fishbelly white when all the girls around me was working diligently on their tans, but I don’t look stereotypically “albino.” Nalini Haynes’ guest blog post for Jim Hines demonstrates that in this regard I am very lucky.
My eyesight is correctable enough that I can drive–not true for many people with albinism–and if I adjust the font size (sending many websites higgledy-piggledy), I can use the computer comfortably without assistance devices. But it isn’t completely correctable. Today, with heavy framed spectacles being geek chic, people tend to assume that if you wear glasses, you can see 20/20 with them on. I can’t. Even with my glasses, I correct to 20/30 in my left eye and 20/40 in my right. And I am extremely skilled at guessing words and letters from their shapes–those damn eye exams with the rows of letters are an excellent training tool. But I can’t, for instance, stand in front of the counter in a fast food restaurant and actually *read* the menu behind and above. I started using bifocals in my early thirties (oh my god best decision EVER). I can’t function in too little light; I can’t function in too much light. Driving at night is something I avoid if at all possible, because the combination of darkness and oncoming headlights is very close to blinding. And, as best I can tell–never having been able to see with anybody else’s eyes–my eyes are set permanently at a lower resolution than the norm. Sharp focus is something I simply don’t have. This makes me very paranoid about small things I encounter that might or might not be dead. (I live with cats. I encounter small things that might or might not be dead on a semi-regular basis.) Because by the time I’m close enough to identify and categorize for certain whether something is a cat toy, a dead creature, or a not-*quite*-dead creature, I’m close enough to be bitten or stung.
I’m reluctant, as I think we all are, to acknowledge that I have a disability. But that’s what albinism is–even mild albinism like mine. Many people with albinism are legally blind. And there are a variety of other problems, like the vastly increased risk of skin cancer, that come with having a deficit in pigmentation. But the thing all people with albinism have in common is our vision problems. That’s the defining characteristic of the condition.
And yet, if you show someone a picture of a person with albinism, they are very likely to assume that person is evil or would “make a great villain.” The defining characteristic of albinism is, apparently, evil. It’s not that there are many characters in Anglophone movies and novels who have albinism; it’s that if there is such a character, he or she is invariably a villain, as if the lack of pigment causes evil. It is, in fact, a cliché, an easy shorthand to signal how an audience ought to respond to a given character. And clichés work in fiction because they are markers of assumptions in the culture at large. You can signal your villain’s villainy with albinism because your audience will recognize coming in that people with albinism are villains. It’s an infinite, self-reinforcing loop.
That may not seem like a big deal, but this is: in parts of Africa, having albinism will get you killed.
The terrible thing is that I am not exaggerating. Asante Mariamu, an organization devoted to helping–in fact, literally saving–children with albinism in Africa (1 in 2,000, as opposed to 1 in 17,000 in America), estimates that only 2% of people with albinism in Africa reach their 40th birthdays. Mariamu Staford, the woman who inspired the creation of Asante Mariamu, is a Tanzanian woman with albinism. In 2008, both her arms were cut off. The men who did it–who cut off both her arms–were motivated by greed. There is, apparently, a profitable trade in albino body parts. And this story, as impossible and gruesome as it seems, is not a freak occurrence, but the kind of violence and humiliation that people with albinism in East Africa are threatened by every day of their lives.
Now, obviously, there are orders of magnitude between a cultural assumption that people with albinism in movies and books are always villains and a cultural assumption that people with albinism are cursed and should be shunned and/or murdered and/or cut up for the resale value of their body parts, but dig down deep, and you find the tap roots drawing from the same poisoned well. Domestic rabbit rescues find that they have the hardest time placing albino rabbits, like the New Zealand Rabbit. On answers.yahoo.com, someone asks “Why do people not like Albino Rabbits?” and goes on to say “Yea, they look evil, but there not evil..I think there sweet.”
They look evil.
In one sense it’s ridiculous, like any other prejudice. I don’t believe for a second that the people who write Evil Albinos into their novels or movie scripts believe that real people with albinism are all predisposed to evil. But if Asante Mariamu’s numbers are correct, there are only about 18,500 people with albinism in the United States. I don’t know if the proportion holds true in other countries, but odds are pretty good that the people who write Evil Albinos have never personally met a person with albinism, and that makes it easy to just let the stereotype roll. That’s the point at which it stops being ridiculous. It isn’t individual instances that are the problem (which is why I’m deliberately not citing examples), it’s the aggregate mass of the unexamined cultural belief. I don’t pretend I know what it’s like to be visible as a person with albinism; evidence like Nalini Haynes’ tells me that it can be extremely damn hard, even in cultures whose prejudice stops short of murder. And for people with albinism in East Africa the prejudice doesn’t stop at all.
I wrote this article about me, but I didn’t write it for me. I wrote it for the same reason I agreed to let the Department of Ophthalmology photograph my eyes at full dilation (OUCH), the same reason I never mind when my ophthalmologist brings in interns and residents to look at my retinas, foveas, and optic nerves: because maybe my example will mean someone else with albinism will be correctly diagnosed and will get the help he or she needs.
And I wrote this article because people who share my disability are being murdered for it.
For more information, check out these websites:
- N.O.A.H. (The National Organization for Albinism and Hypopigmentation)
- Positive Exposure
- Asante Mariamu
- Under the Same Sun
Filed under: Special Needs in Strange Worlds
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