Wednesday, 26 January 2011

Reading One of Us

I recently got One of Us: Conjoined Twins and the Future of Normal from the library. It is apparently the kind of book I would get from the library, or so I've been told. If you want to see details, here's a link to the Amazon site. The official blurb on the back is very minimal:

One of Us views conjoined twins and other "abnormalities" from the point of view of people living with such anatomies, and considers these issues within the larger historical context of anatomical politics.
The rest of the back is quotations from book reviews.

It's the sort of book one would encounter in academia, so for those of my readers missing university thought, perhaps you can indulge yourselves vicariously through me here. I haven't even finished the introduction yet, but I want to quote portions of what I have read. There's a lot, but I wanted to preserve something like the thrust of the discussion. It's fascinating.

...The truth is, most of us go through minor anatomical 'normalization' procedures every day, changing our bodies ever so slightly to fit the identity we wish to present socially. We brush the plaque off our teeth, in part to keep them healthy but also so that they won't disgust others with a smell or appearance that would signal we are unclean (and therefore, by the rules of anatomy and identity, slovenly or poor or ill). We wash and style our hair and put on clothes meant to signal who we are underneath (man, woman, corporate team player, professor, artist, rebel). We add a wristwatch to enhance our imperfect internal clocks, to keep our bodily movements well timed in relation to others'.
We shave various parts of our bodies depending on what kind of sexuality we wish to signal. We put on eyeglasses or slide into a wheelchair to compensate for the anatomical deficits that might otherwise keep us out of the stream of human life, which largely requires sight and autonomous movement. We worry about getting too fat, knowing that fat is widely equated with weak will and ill health, and we so [sic] step on the scale, choose the diet soda, go to the gym for a workout.
Nevertheless, some people are born with anatomies that don't fit the social rules so far as anatomy and identity are concerned and that cannot be "normalized" by any simple procedure like shaving or the donning of glasses. These people are born with anatomies that complicate efforts to easily categorize them. Cheryl Chase, for example, was born with mixed sex anatomy, internally and externally, which made it hard for people to figure out whether to expect her to become a boy or a girl. Lori and Reba Schappell were born conjoined at the head, an anatomy that can make a new acquaintance unsure whether they are to be approached as one person or two. Ruta Sharangpani is profoundly nearsighted but can see just enough to manage without an obvious aid like a can or dog; she also has an eye that can't quite meet your because it shakes and wavers. Danny Black has achondroplasia, a form of dwarfism, and though he is middle-aged he inhabits a body whose proportions are supposed to characterize only the immature.
[...]Most of us are so used to dealing with people who fit invisibly into the standard categories of anatomy and identity that it is jarring when we meet someone who doesn't. And it is the recognition of this awkwardness, the recognition of how comfortable it can be to be considered normal, how uncomfortable it can be to be considered abnormal, that motivates adults to want to surgically normalize children born with unusual anatomies, to separate the Loris and Rebas, to make the Cheryls look like "real" girls, to stretch the limbs of the Dannys, to make the Rutas look fully sighted.

Often the adults who impose such a normalization understand it as a charitable manifestation of pity. And no doubt it is. But "pity" is defined as sorrow for another's suffering and misfortune, and that's exactly why it is experienced by many people born with unusual anatomies as not only unsupportive but actively oppressive; for pity implies that the subject must be suffering and unfortunate. When I asked Lori Schappell how she felt when people treated her with pity, she bristled, saying that as soon as she saw such a "pity conversation" starting, she would end it or leave it. Trying to fight the degradation of puty, Ruta Sharangpani told me once, is "like trying to climb a glass wall. There are no handholds, no way to talk to a pitying person, because she or he does not see the disabled person as a competent individual." So, however unintentionally, pity silences the person who might otherwise speak to defend the value of her person and her life.[...]
By considering conjoined twinning and other "deformities" within the larger historical context of anatomical politics, [this book] argues for a more radical understanding of "abnormal" bodies. It seeks to change assumptions made about people born with unusual anatomies, and by doing so it seeks to change the context built around those people. The typical story told about such individuals is one in which the child's anatomy is changed to fit the social context. This book seeks instead to change the social context by exposing the breadth and depth of that context. It endeavors to show what something as rare as conjoinment could have to do with the rest of us.

In the next part of the Introduction, Dreger focuses on conjoined twins. [Boldface mine.]

...But the reason [conjoined twins] are treated so differently from others is not simply that they are rare; it is that people in general expect, quite reasonably, that any individual they meet will be the only person inhabiting his or her skin. Because most singletons--by which I mean people born with no anatomical bond to anyone but their mothers--understand psychosocial individuality as requiring anatomical individuality, they tend to assume that conjoined twins are trapped in such a way that makes a happy, normal life impossible. Only surgical separation could truly make them free.

New York Magazine vividly exemplified this assumption when it printed a photograph of infant twins Carmen and Rosa Taveras in November 1993--several months after they'd been surgically separated--under the headline "FREE AT LAST." But as Chapter 1 demonstrates, such a headline would make little sense to people who are conjoined, because most people who are conjoined do not feel physically entrapped. They do not wish they had been born into singleton bodies. Indeed, Laleh and Ladan Bijani, who chose to be separated in 2003 at the age of twenty-nine, were the first conjoined twins in history to consent to separation surgery. Though it may seem shocking, in none of the hundreds of previous separation operations performed were surgeons givern permission by the patients themselves to do the surgery. This is not simply because most conjoined twins fear the risks of separation. It is because [...] people who are conjoined typically feel that their bodies and lives are perfectly normal and acceptable--sometimes even preferable. They don't think there is anything fundamentally wrong with being conjoined. Thus, one of the ways in which conjoined twins are like almost everyone else is that they tend to readily accept, and even prefer, the anatomy with which they were born.[...]

A friend of mine (Sunny) was unsurprised that almost no conjoined twins want to be separated. While some may think that conjoined twins could not be happy, she would think you couldn't be happy with major physical trauma. Well put, I think.


Jon Wong said...

I've always this to be an interesting topic - whether or not it is considered insensitive to "feel sorry" for people with clear disabilities. I mean, it might not be because I feel that that person is "suffering" per se. In fact, that's not it at all. I do, however, feel that their lives must be more difficult, not because of who they are, but because of the society in which they live. I feel that it sucks to have to wear glasses; is that any different?

Christian H said...

1. This book isn't especially concerned with disability per se; conjoined twins and intersexed people do not really have different spectrums of ability, outside of social expectations.
(I realize you may not have been thinking of conjoined twins or intersexed people.)

2. Do you feel sorry for women or non-white people because life is harder not due to anything intrinsic to them but due to social norms? (I say this while being fully aware that you, Jon, are non-white, and that most of my other readers are female.) Dreger makes this point explicitly elsewhere in the introduction.

3. The fact remains that pity is unhelpful. We should probably listen to them when they tell us this. Discrimination tends not to stop when people don't listen to those being discriminated against.

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