Abacaxi Mamão

On Monday, I did two things. Well, I did more than two things, but two things that I did melded in my mind and raised some interesting issues.

I watched X-Men: The Last Stand, in which (don't think I'm giving away the story here) the government has discovered a way to permanently suppress the genetic mutation that gives the X-Men (and Women) their special powers. Then I read Elizabeth Weil's Sunday New York Times Magazine article about intersexuality ("What if It’s (Sort of) a Boy and (Sort of) a Girl?"), which is about Cheryl Chase's efforts to prevent doctors and parents from automatically performing surgery on infants born with ambiguous sexuality (male/female, not homosexual/heterosexual).¹

The common denominator here is: When people are born with abnormalities, how much effort should we make to correct them? I guess to answer that, we first need to define what abnormal is. How much does something have to deviate from the average to be abnormal? With which drastic means can or should we intervene? How much do we know or can we assume about how being abnormal affects a person's overall well-being and happiness? How much does the desire to correct abnormalities reflect our best wishes for the person in question and how much does it reflect our own discomfort with human difference?² Does it make a difference if we prevent abnormalities before birth; correct them soon after birth; correct them in childhood; or let it wait until the child is an adult and can decide for him or her self?

The premise in X-Men is that mutants (as the X-Men and others like them are known) generally want to be mutants, and regular human beings don't want them to be mutants. The humans both fear the mutants and are disgusted by them. This is complicated by the fact that some mutants dislike being mutants and wish that they could be normal, while others have adjusted to their differences and appreciate their special powers. (It is possible that mutants who dislike being mutants feel that way because humans revile them.) In the beginning, the government just wants to make this mutation-suppressing serum available, but then for some reason that was never quite clear to me, they decide that for the safety of the nation, they're going to have to shoot mutants with it against the mutants' will. This may be giving away the end, but some mutants are willing to hijack the mutant-suppressing technology for their own use, while other mutants seem viscerally opposed to using any means to change anyone's genetic makeup.

The way this movie frames the issue, it seems clear that no one's genetic makeup should be tinkered with against their will, no matter how mutated they are. It also seems clear from the film that if someone wants to get rid of their mutation, and thus their special powers, they should be free to do so.³

The New York Times article complicates issues, as real life tends to. It further complicates issues because it is talking about mutations or abnormalities that affect sex and gender. (Yes, both.) Babies who are born with XX/XY chromosomes that don't match their external genitalia, or babies who are born with both external characteristics of both males and females (to some degree), or with both testes and ovaries. It's complicated. When they're born, doctors don't quite know what to tell the parents. Incidence of ambiguous sexuality is somewhere between 1 in 2,000 (.05%) or 1 in 4,500 (.02%) live births, depending on whom you ask. They used to just assign a gender and do corrective surgery in infancy and then again later in childhood, and often didn't tell the child what the surgery is for. Cheryl Chase, who advocates on behalf of intersex people, has a different opinion:

Chase says she believes that every child should be assigned a gender at birth but that the assignment should not be "surgically reinforced" and that parents and doctors should remain open to the idea that they may have assigned the wrong sex. She contends that the most important thing is for a child to feel loved by her parents, despite her difference. An operation, she says, should not be done to assuage parental embarrassment or anxiety; it should be chosen, if it is chosen at all, by an intersex individual who is old enough to make her own decision and give proper consent.

Anyway, read the article. I remember discussing this in a women's studies class, and everyone sort of agreed with Chase, but then when you asked people what they would do if they had a child born with ambiguous genitalia, almost everyone said that they would have surgery performed before the age of consent. It's just too uncomfortable otherwise.

This sticky, complicated, uncomfortable situation is compared, in the article, to a child who is abnormally short. How much should doctors and parents medically shape the child before the child can understand what the issues are? Should s/he be treated with growth hormones? With surgery? What if the shortness doesn't cause any other physical or medical conditions, but is just a fact of life? Does a parent take into consideration the oft-spoken "fact" that taller people do better in life? (Not sure if that's been established with any statistical validity.) One doctor, who thought that parents had every right and responsibility to have gender-assignment surgery performed on infants and small children, said:

In Baskin’s view, being intersex is a congenital anomaly that deserves to be corrected like any other. "If you have a child born with a cleft lip or cleft palate or an extra digit or a webbed neck, I don’t know any family that wouldn’t want that repaired," he told me. "Who would say, 'You know what, let’s wait until Johnny is 20 years old and let him decide'?

I actually know someone who was born with two webbed toes (two toes kind of attached with skin), whose parents were asked if they wanted someone to snip them apart when she was born, and they said no. She has them to this day. They felt, I assume, that she was born that way and since it wasn't a problem in any way, why mess with it? There is something very nice about loving your child just as he or she was born, barring any clear medical necessity to intervene. Obviously, ambiguous genitalia, a cleft palate, or a webbed neck are more of a problem than a couple of attached toes, though.

I guess the broader issue that this raises for me is how important physical conformity is in our society. It bothers me a great deal. Now that it's possible to basically medicate or perform surgery or dye or wear tinted contact lenses so you can look and be (externally) anything or anyone you want, where do we draw the line? What about prenatal tests that show abnormalities and lead to abortions? Is an ideal world a world in which no babies are born with Down's syndrome? In which no babies are born blind, deaf, or with heart defects?⁴ In which no babies are born predisposed to depression or autism? In which all people are tall, thin, and blond, if we can scientifically show that those people succeed more in life, however we measure success?

In Kay Redfield Jamison's Touched by Fire: Manic-Depressive Illness and the Artistic Temperament, she speculates that manic-depressive illness tends to run in artistic and particularly high-achieving families. It is well-known that many great, accomplished writers struggled with depression and/or alcoholism. Would artificially selecting aganist these traits deprive the world of art and music? I'm not suggesting that people go untreated (because that's just stupid, and a dead person won't be producing any art at all), only that parents and doctors might want to be careful when playing God. We have a lot to think about as a society in regard to medical intervention before and after birth.

If you don't believe me, just see what happens in X-Men: The Last Stand.

-------------------------------------------
1. It is the seventh-most e-mailed article from the NYT today, which means that lots of other people are reading it. Also, I wrote a paper on intersexuality in college. I wrote papers on lots of interesting things in college!
2. David Cutler once mentioned in a class of his that I took that people don't mind being "abnormal" or impaired as much as others without the impairment think they would or should. I e-mailed him to ask for some backup, since I had no idea if this was his idea or someone else's, and he sent me this exerpt from a recent working paper of his. The part that I italicized is the most relevant in this context.

Typically those who have experienced a condition rate it less severely than do those who have not (Sackett and Torrance, 1978; Slevin et al., 1990; Epstein et al., 1989; Ubel et al., 2003). A number of explanations have been put forth to explain this phenomenon. People with the condition may adapt to it over time, they may make a mental shift and rate themselves in comparison to other sick people (or to how healthy they could expect to be with their health problem), and/or those without the condition may focus too narrowly on the potential negative life impact of the problem (a focusing illusion)(Ubel et al., 2003; Kahneman and Tversky, 2000).

Sackett DL, Torrance GW. The utility of different health states as perceived by the general public. Journal of Chronic Disease 1978;31(11): 697-704.
Slevin ML, Stubbs L, Plant HJ, Wilson P, Gregory WM, Armes PJ, et al. Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and general public. British Medical Journal 1990;300(6737): 1458-60.
Epstein AM, Hall JA, Tognetti J, Son LH, Conant L, Jr. Using proxies to evaluate quality of life. Can they provide valid information about patients' health status and satisfaction with medical care? Medical Care 1989;27(3 Suppl): S91-8.
Ubel PA, Loewenstein G, Jepson C. Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public. Quality of Life Research 2003;12(6): 599-607.
Kahneman D, Tversky A, editors. Choices, Values and Frames: Cambridge University Press; 2000.

3. Perhaps it should even be covered by their HMO. The movie avoids this sticky topic. The issues of payment and reimbursement never come up. No long forms to fill out in triplicate, etc.
4. Ironically, medical advances in recent decades have enabled many premature babies to survive, albeit with various disabilities, so rates of some of these problems have risen in recent years.

Labels: gender