I read a couple of articles today (here and here) about facial reconstructive surgeries. These are not the first stories of this kind I've read. These stories tend toward the maudlin, the saccharine. They are told with a cloying chicken-soup-for-the-soul mentality. They tend to take place after recovery (or the extent of recovery anyone with such massive injuries can achieve), when the one who's been disfigured can speak with an equanimity that would be impossible at the zenith of their suffering.

Even their pain and the pain of their families are filtered through the normate reporter's pen. It is portrayed in broad strokes, the grief of being rejected and ridiculed glossed over or spoken of casually, and it is usually only included to show the contrast between what their life was like then and what it's like now.

It makes me wonder. (Here comes the complaining now, you think; she's always complaining about something.)

Now, I'm not going to criticize these people's efforts to have a more "normal" face. I can't imagine how difficult it must be to be missing parts of your face, to not be able to smell or eat solid food or even breathe on your own. Whatever stares and insensitive remarks I have received in my life must pale in comparison to the stupidity of norms these people have experienced. I don't fault them at all for their wish to be independent or to simply blend in.

What I do fault is the way in which these stories are told. I wish someone would have the bravery to explore this issue just a little more in-depth. That would also require the bravery to explore their own prejudices.

Particularly galling is the last page of the second article. Here, a sentence etched on a church door in Italy is quoted: "It is the divine right of man to look human." Why this should be etched on a church door is one question. What this is supposed to mean is another.

Yes, though the quotation may sound "cool" to someone who doesn't stop to think about it, it is in fact meaningless. What does "divine right" mean? What good is "divine right" when humans (and circumstance) get in there and muck everything up? We might say it is the divine right of every human to be free, but that doesn't mean very much to those in bondage. Sure, we might grant such people freedom, but then "divine right" really had little to do with it: freedom was taken away and bestowed by humans.

So what meaning does this sentence hold for a man whose "divine right" was taken away by a suicide bomber? How much less meaning does the phrase hold for someone who was born (some might say sculpted by divine hands) not looking human? What happened to their divine right? Is God joking with them?

Furthermore, who exactly decides what looks human? Sure, there is a mode (as in mean, median and mode) of humanity. Most people have two legs, two arms, a face with two eyes, a nose, a mouth. But soon things start to get tricky. Most people fall within a certain range of heights, but it's pretty arbitrary when you can say to someone, "Just one inch taller and you'd just be short, not a little person," or "Just one inch shorter and you'd just be tall, not a giant." Things can get really ridiculous. Most people have hair on their heads. Shall we then say that bald people don't look human? No, clearly that's just silly. Why, then, is it not silly to say a person with burn scars all over their face doesn't look human? Why is it that an amputee passes for human (if just barely), but someone with swollen or withered limbs does not? And why, why, why do norms assume that everyone feels the same way they do? The whole tone of this piece assumes a hierarchy of appearance. "Oh, the poor disfigured man," it says. "But yay! Now he's better. Phew! I don't know what we'd say if he weren't better." Even when it discusses the hard times he went through because of norms' stupidity, it takes the stance that, well, it's unfortunate that he had to suffer like that, but it's understandable, and plus, now he's fixed, so everything's better.

Okay. Things may be better for him, but what about the rest of us? What about those of us who can't be "fixed"? We still have to suffer the stares and the whispers, sometimes even, most hurtful of all, the looks of shock that seem to say, "What the eff is that?" We still have to suffer the stupid comments and the trepidation. And I'll go out on a limb here and say that for most of us, the biggest problem we have with our disabilities is not the things we can't do; it's the constant barrage of stupidity from norms.

Now, it's not entirely their fault. They probably don't get to see a lot freaks in their day-to-day lives, so they don't know how to respond when they do see one. The only solution is for us freaks to be more visible. If every norm knew one deformed person, they wouldn't be so thoughtless toward the deformed strangers they meet. But that would mean we would have to expose ourselves to the world, and that's hard to do when confronted with such stupidity. Ah, it's a vicious circle indeed.

The phenomenon of Susan Boyle

Why should I even be writing about Susan Boyle? She's not disabled (that we know), but she is, in some sense, a freak. Why do I say this? It's not just because she is that rare and freakish thing on TV: a woman who does not have model good looks. I sense something in her, some kinship with her, as she swivels her hips, saying, in response to a question about her age, "47. And that's just one side of me" (what does that even mean?). Clearly, the kinship does not extend too far; I know my place; I have some sense of what constitutes appropriate behavior—two things Ms. Boyle seems to lack, or ignore. No, I would never put on such a display, but I recognize in her someone who has, like me, been unsure of herself, who has, like me, been made to feel less worthy (ahem, less of a commodity) than the perfect, beautiful girls of the world.

More than that, I recognize her as a freak because of the way the audience responds to her. Watch the full video, and you get more of a glimpse of the derision with which the audience regards her. "This is a ridiculous woman," they are thinking. "I am going to get a good laugh at this." Indeed, most people are laughing already, as soon as Ms. Boyle walks on the stage. It's not merely her physical appearance; it's the way she carries herself, the way she presents herself. You can sense she's a little socially awkward, perhaps unaware of her ridiculousness. Yes, the audience can smell a freak, and Ms. Boyle is certainly a freak.

That doesn't change when she starts to sing. What? Why would I say that? Isn't that the reason she has become an Internet sensation? Because everyone was wrong about her? Because she turned out to have an amazing talent?Well, that doesn't make her any less of a freak. She, like Rudolph the Red-Nosed Reindeer, turned out to be a useful freak, one that we can like and root for, but a freak nevertheless.

What irks me is all these norms talking about her, showing her Youtube clips to their friends, saying, "Isn't she amazing?" as though they're on team Boyle, as though they're truly sympathetic to her. Imagine for a moment that she had not surprised anyone. Imagine that she had turned out to be as terrible a singer as everyone thought she would be. All these people who are rooting for her now would, instead, have had a good laugh at the freak. And that is all.

Have these norms learned their lesson? Will they not be so quick to judge in the future? Does their admiration for Ms. Boyle somehow exculpate them? Heavens no! After Ms. Boyle leaves the stage, they'll bring out the next freak, and everyone will have a good laugh at them, and so on, ad infinitum.

Blindness

I recently watched Blindness, the film based on the book of the same name by Jose Saramago—a book which I very much enjoyed and count among my all-time favorites. Only after seeing the movie did I learn of protest at the film’s production. Advocacy groups for the blind apparently took offense at the film’s (and presumably, the book’s) use of blindness as a metaphor for moral decrepitude. This is understandable, but it made me question myself and my sensitivity to such issues since I didn’t find anything offensive in either the book or the film. Did I simply miss it because I am not blind? Or is there more to this issue?

First, I believe my understanding of the use of metaphor in the story differs from the understanding of the protestors. Where they see the film showing blind people behaving as “monsters,” I see the film as showing norms suddenly struck blind behaving as monsters. This is a key difference.

I have touched on this idea before, and will no doubt revisit it many times in the future: disability is more than a physical or mental phenomenon; it is a psychic one (as in psyche, not ESP). A person who is injured and loses the use of their legs is disabled, but is not suddenly a disabled person. They are a norm with a disability. It may take many years (if ever) for them to stop seeing themselves as a defective “normal” person. This is how I view the characters in Blindness. They are all (with one notable exception) norms, not blind people. Perhaps that’s why I don’t find their depiction offensive. I do believe that norms in that situation would be helpless, would be afraid, would be lost, and would resort to baser instincts. (What little faith I have in norms.)

In that context, blindness becomes a handy method for exploring humanity’s failings and society’s frailty. Furthermore, as I read it from a disabled person’s perspective, I see how debilitating the fear of disability is in norms. All the norms in the story fall apart when they become disabled; they are terrified and become helpless in the face of that terror. It’s actually quite damning of normate thought—at least as I read it, which to be fair, may never have been in Saramago’s mind as he was writing it.

The story also explores, not just literal, individual blindness and its possible consequences, but societal blindness. Part of the reason society falls apart in the story is that individuals need to know they are being watched if order is to be maintained.

The second issue at question is the use of disability as metaphor. For as long as art has existed, disability has served as a metaphor for weakness, immorality, and evil. Words like “lame,” “deaf,” and “blind” are fraught with meaning that goes beyond disability. To what extent are we to try to alter the meanings of these words, to remove their negative connotations? Is that even possible?

It is possible that there is something inherently symbolic in disability and it will be difficult, if not impossible, to remove all symbolism from the disabled body. Another question is whether doing so would be desirable. In all I’ve studied of people with disabilities, it seems that the more “normal” the disabled person, the more they desire normalcy, the more they desire to erase any stain of “otherness” from themselves. The true freaks embrace their otherness—perhaps because they have no choice.

This is clearly an issue that deserves more exploration than I can give it here. I am not trying to say that the use of the disabled body as something symbolic is good or bad, only that there’s a power in it that instead of denying, perhaps we could learn to utilize.

Again, perhaps I am not qualified to speak about this, since I am not blind. That is part of the problem of the disabled community: its disparateness. But I hope some of these points are valid.

Romance and loss

I have been listening to Small Change a lot lately. It’s populated with beaten-down, world-weary souls, longing for small things: the end of the work shift, or a job at the filling station and a shot at the waitress in the diner. This is a life I have never known, and, I suspect, Tom Waits has never known (he was 24 when he wrote these songs and, by all accounts, did not have a particularly hard childhood—another testament to his genius).

I find the world he creates in this album extremely romantic. Why? Is it the simplicity of these lives? They just want a job that will pay the bills and time to spend with their baby. That’s the best they can hope for, and it’s a pretty reachable goal, unlike my own. They don’t chase after the trappings of the bourgeoisie—fancy clothes, gourmet food, the latest appliances—like I do. And they’re free. They’re on the road, or they have no ties to hold them to any one place, as I do.

I was talking to one of my friends about this, and she said, “But that’s kind of sad, isn’t it? If you’re free to go anywhere, that means you have no one who loves you back home.” I had to agree with her; it is sad. But I think that sadness is essential to romantic ideals. Think about the archetypes we idolize: the cowboy, the gumshoe, the vigilante; they’re all lonely; they all have demons. What’s so romantic about that? Why is Romeo and Juliet the quintessential romance, and not Much Ado About Nothing? It’s loss, not gain, that defines romance. We feel for those who have less than we do, and we can see their lives as perhaps more reachable than the lives of the rich and famous. We might wish we were rich and could live happily ever after, but it’s those who die young that we raise to sainthood. Do we really wish that for ourselves? Are we all, on some level, flagellants?

My mother the madam

You might have heard about this mother in the UK who is pleading for women to have sex with her son. Her son is 21, a virgin, and oh, he has Down syndrome.

That's the pivotal point, really. Take that out of the equation, and it's just an odd story. With it, the story raises all sorts of questions.

My gut response is that this mother's actions are really demeaning for disabled people (and virgins) everywhere. When I dig a little deeper, I see that it's really more troubling than that.

The mother spouts a lot of ostensibly disabled-sensitive talk. She questions society's response to People of Difference, as I like to call us. "Why should these people be kept separate and pigeon-holed when they have the same emotions, desires and feelings as so-called normal people?" she asks, quite reasonably.

But then she ruins it with this: "If he doesn't get a girlfriend, I will feel really bad, because I have sold him this thing that he is like everybody else. That's why I'm working overtime to get this sorted for him." Does her behavior make him "like everybody else"? Does "everybody else" have mothers arranging sexual partners for them.

In fact, under the guise of wanting her son to be "normal," this mother is treating him like a freak.

She's also instilling in her son the same shallow, aesthetically based societal values she supposedly rejects:

1. in order to have any value, you must experience what everyone else does (e.g. having sex, fathering children);

2. implicitly, women are interchangeable and have value only as sex partners, not unique individuals with whom to have a relationship;

3. perhaps most disturbing, as she says she would prefer that whatever girlfriend he gets not have Down syndrome, that "normal" people have a higher commodity value than disabled people and should be sought over others.

Beyond the scope of true disability, this mother seems to have a problem with any sort of freak, i.e., anyone who deviates from the "norm," and she seems to have a very narrow idea of what "normal" is. Apparently to her, if you're not having sex, you're a loser. If you're not a parent, you're a loser. If you're not like everybody else, you're a loser. It's sad, really. And it's particularly sad that she, and many others no doubt, believe that she is truly sympathetic to people with disabilities, when in fact, she is the worst kind of bigot.

The authors who have influenced me

Sylvia Plath


Katherine Mansfield


Raymond Carver


Samuel Beckett


Djuna Barnes

Do things happen for a reason?

There have been times in my life—those times when I feel happy and content—when I have thought that everything has worked out for the best. I may have even thought things had happened for a reason. I suppose it’s comforting, in a way, to think that the direction of your life is out of your hands. We all like the idea of free choice, but what if we screw things up? What if we make the wrong choice and make ourselves miserable? It’s comforting at those moments to believe that there’s a reason for that misery, that it’s all leading somewhere.

But what if it’s not? What if we’ve just made a stupid choice and that’s … it? Then what do we do?

We make a purpose. We say, “I can learn from this,” or “This will make me stronger,” and it often does. It’s important for our sanity to be able to this. We can create great things from our misery, but we can’t say that there’s any purpose to it. There’s no purpose to anything. Life is only one act of coping after another.