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Sunday, May 19, 2013

Growth Attenuation, Intersex and Bodily Integrity

One of may favorite scholars is Alice Dreger. I find her work fascinating because it makes me think in a different way. Dreger studies and advocates on behalf of people with intersex conditions. I deeply admire her scholarship, advocacy and ability to enhance people's understanding of interesex conditions. As I understand it, intersex is the condition where an individual is born with biological features that are thought to be male and female. Sometimes referred to as ambiguous genitalia the history of people with intersex conditions is disturbing. Early sex assingnment surgery is the conventional response on the part of medical science. For far too long the ethics of such surgery was not questioned. Dreger also studied conjoined twins and standard medical care. Separation surgery was the norm because it was assumed conjoined twins could not lead a normal life. In her book, One of Us, Dreger clearly demonstrates conjoined twins can and have lived  full and rich lives. There are obvious parallels between Dreger's work and the history of disability. In fact the subtitle of One of Us is Conjoined Twins and the Future of Normal.  Normal here is meant in the context of how do we select medical treatments and use medical technology. I agree with Dreger that too many standard medical protocols cause as much damage as they help. Dreger wrote:

In the United States, the values of individualism, self-improvement, fee enterprise, and high-tech medicine have combined in the past few decades to create a culture in which one is able--indeed even expected--to employ medical technologies that alter one's anatomy and make it more socially advantageous".  

I think a connection between the past and present medical response to interex, conjoined twins, and those children who could potentially be subjected to growth attenuation can be established. By those children I am referring to young people with severe cognitive and physical deficits. I am prompted to make this connection by an article Dreger wrote "When to Do Surgery on a Child Born with Both Genitals" in the Atlantic. See: I do not envy Dreger's effort to raise the level of understanding about intersex conditions. People accept without thought the stark dichotomy between male and female.  Two genders exist and much cultural effort is put into maintaining that stark dichotomy. In fact I would argue we celebrate and value the difference between men and women and in a myriad of ways seek to enhance that dichotomy. While this may work for the majority of the population, it provides the opportunity for medical science and technology to reinforce this dichotomy via questionable treatments such as sex reassignment surgery. In the Atlantic Dreger writes about a 16 month old foster child from South Carolina identified as M.C. who underwent surgery to correct ambiguous genitalia. The goal was to make M.C. genitals look more feminine. M.C. is now eight years old and identifies as a boy. His adoptive parents believe that the state was wrong to allow the surgery. They also argue doctors were wrong not to inform those making the decision on the part of M.C. that the surgery was not medically necessary. The parents recently filed a lawsuit on behalf of M.C. that alleges doctors "robbed M.C. not only of his healthy genital tissue but also of the opportunity to decide what should happen to his own body". When I read Dreger's article it took about a second begin thinking about parallels between the so called Ashley Treatment and sex reassignment surgery. While Dreger worries about how the court will respond, and she has a sound reason to be concerned, I wonder if the outcome of this case can be applied to growth attenuation. Dreger wrote

it will be interesting to see whether the courts agree with the plaintiff's lawyers that the 14th Amendment is at play here, and whether they will limit that Amendment's scope to cases where "a boy lost his penis." If, in fact, they understand the case as being an unfair situation in which "a child lost healthy genital tissue for no legitimate medical reason without fully informed consent," then the implications will be much broader, perhaps touching even on routine neonatal male circumcision.

I agree the implications could indeed pertain to male circumcision. However, I would speculate the possibilities are even wider in scope. Wider not in terms of the number of boys who may not be circumcised but in limiting radical procedures such as growth attenuation and sex reassignment surgery. Dreger concluded her essay noting that 

since M.C. was born -- major medical consensuses have moved away from the assumption that genital-normalizing surgery is required in all cases of intersex. This case is likely to drive surgeons to be even more hesitant to remove healthy genital tissue and healthy gonads from children like M.C. Ideally, the case will also lead more parents like Mark and Pam Crawford to understand that parenting sometimes involves forms of unpredictability that cannot, and even should not, be made to disappear.

I think any physician who is considering to radically alter a child's body would be extremely hesitant to make such a suggestion to parents. I think sex reassignment surgery, separation surgery with a very high mortality rate for conjoined twins, and growth attenuation all qualify as radical body alterations. I would also speculate children being considered for these radical procedures need to be protected by the fullest extent to the law. At minimum, such a child should be represented by a disinterested third party. I am not suggesting every surgical procedure performed on a child be subject to a legal review. Parents are given great latitude, as they should be, in making critically important health care decisions. However,  some radical procedures warrant an added level of child protection and advocacy.  I think the past and present use of sex reassignment surgery demonstrate this fact. Dreger noted that "many intersex women who had their clitorises surgically shortened in infancy are legitimately angry about having had tissue (and thus sensation) taken from them." Obviously the differences between the intersex and those with profound cognitive and physical deficits is significant. Yet I would suggest both populations have a right to their bodily integrity--they are afterall human beings born with the same rights as those reading these words. More generally I bemoan the fact medical technology is being used in ways that I think can be deemed ethically questionable. Radical surgery can not solve the social problems people who have an intersex condition will encounter. The same can be said for growth attenuation. Rendering a child small as Ashley X parents did may make her physically easier to care for but will not address the profound problems people with cognitive and physical deficits encounter (and by problems I mean shocking abuse and a gross lack of social supports). Hence I would conclude we, meaning all of us, need to do exactly what Dreger's subtitle suggested--reconsider what we deem normal. As one with an atypical body I think it is well past time to broaden our thinking and create a more inclusive society.  


Anonymous said...

I hope there really is a trend in the medical profession toward leaving sexually ambiguous babies alone. The sad facts of the history here include one Dr. John Money in, I think, the 1950s making the argument that it was important for the child's psychological well-being that 'corrective' surgery be done.

Hindsight indicates that Dr. Money wanted to try out his plastic surgery technique and held strong opinions in support of the gender binary ... and he and others often told parents such surgery was 'necessary' when it wasn't, and pressured parents to allow it at much younger ages than the 16 months in this case.

There do seem to be a very few cases in which an intersex baby also has, for example, an imperforate anus (that is, the intestinal tract does not have an exit opening) which will cause death if surgery is not done. But this is quite rare.

Matthew Smith said...

I don't believe there is any comparison between sex normalisation surgery on intersex infants, and growth attenuation surgery on disabled children. The latter is an unethical surgery done purely for the convenience of their parents or carers (the spurious arguments about their welfare are extensions of its benefit of convenience). It's also complex and extremely invasive surgery, particularly as performed on girls.

Sex normalisation is done for the benefit of the child, because the gender binary is not a social construct, it is a natural fact and anyone who thinks we can let children grow up halfway between because it's going to go away are confusing foolish dreams with reality. There have, in fact, been cases in which young children have been reassigned from one gender to another (usually to female) because their bodies were incompatible with maleness, even though their chromosomes indicated that. A well-known case is that of Joella Holliday, who was reassigned at a year old and fully accepted her new gender (she had XY chromosomes although this was not known; she was christened and named Joel at birth in a hurry as it was feared she would not live long). Many of the failed reassignments happened at an older age than that. David Reimer, for example, was reassigned at 22 months. The quality of the surgery has also improved quite a bit since the awful cases that fuel the anti-surgery campaign.

In this case that Dreger is talking about in South Carolina, you have to ask about the role of the family in fostering the boy's male identity. I am not sure if it's the same case (it's also in the South and the boy is now about the same age), but I have seen a video in which an adoptive mother talked of trying to "save" her son from being "turned into a girl", when in fact he had been born with aspects of both male and female organs and without a functioning testis. The mother had said something like "well, he had things I don't have" and identified him as male, when doctors were more inclined to assign him female. Now he apparently plays like a boy ... it will be a lot more difficult when he reaches puberty.

william Peace said...

Second Summit, John Money and by extension Johns Hopkins behavior was unethical and wrong. The medical legacy associated with the way intersex conditions is shocking to me--on par with the Eugenics movement.
Matthew, I will not dispute linking intersex surgery and growth attenuation is problematic. Your points are thus well taken. Ashley X parents claims, while dubious at best, were framed in "benefit of the child" reasoning. This line of reasoning was good enough to sway the opinion of an ethics committee at Seattle Children's Hospital. The same "benefit of the child" reasoning dominates the medical literature on treating intersex. I am not sure I agree that gender is a natural fact. Obvious physical difference exist between male and female. I would maintain much time and effort is spent on exaggerating that difference (the old nature nurture debate). Intersex conditions blur the lines of gender. I do agree growing up neither male of female would be difficult if not possible. None of this addresses the issue of cognition. Here I think is the main problem with comparing intersex with those that could be subject to growth attenuation.