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The Ongoing Debate

Jed Bland

 
GENDYS JOURNAL

Issue 6
May 1999

 
There is a general ignorance about intersex conditions even in professional journals. ISNA(1) were quick to point out that, the article indicated that "the reason infants with ambiguous genitalia are assigned female is that most of them have adrenal hyperplasia" and that this is untrue. There is a wide range of possible causes, but often there is nothing more than a simple variation in appearance that the surgeon feels will not be aesthetically acceptable.

Also ISNA, contrary to the article, does not recommend that intersex babies simply be left alone. They do recommend that a committee evaluate the baby and assign a sex, based on both medical evaluation and input from qualified mental health professionals and intersex peer support/advocacy groups, but oppose early genital surgery, which is damaging to sexual function. They suggest that the patient should also be allowed to change sex-role, and to choose whether or not to use surgery in the process. They also suggest that children have a well-formed sense of their own gender identity, approaching adolescence, and that a request for change of sex-role should be honoured, not delayed until legal age of consent. By such an age, irreversible physiological changes in the direction opposite the patients' identity will have occurred. These recommendations are similar to those offered by Diamond and Sigmundson, and reiterated in their paper which follows"

What sparked this recent debate was a review by Diamond and Sigmundson(2) of an earlier paper by Money(3) about a boy who had been reassigned as a girl after accidental total ablation of his penis during a circumcision by cautery. The italics are important. The paper by Money is quoted in every textbook on gender, and became a dogma in paediatrics. There is not space here to discuss them fully, but I have problems with both papers. You might think that these were scientific studies in which all the variables were characterised and careful measurements taken. In fact the first seemed to rely mainly on the subjective account of the child's mother. My feeling is that there are too many extraneous variables for the findings of either to be applied rigidly across the board. The history of psychiatry from Freud onwards is littered with single case studies that have been generalised to a wider population. We should not allow ourselves to move from one dogma to another.

Inevitably, there has been an uproar in the press, with prominence to those with a political axe to grind and the most quotable quotes, such a meaningless soundbytes like "the power of the XY chromosome." There is the distinct impression that we are moving from the extreme that children should always be reassigned, to the extreme that they should never be reassigned.

If the figures are correct, some 270,000 Americans are affected and some 50,000 Brits. Some at least will have been given surgery or even reassigned, and have disappeared into the community. Can, those that Diamond writes about, and ISNA itself, be considered representative, or is they a self-selected sample of dissatisfied customers? At what point is someone considered intersexed? If the term includes those who were male or female from conception through to their assigned role, without them having any doubts as to their gender identity, does surgery for aesthetic reasons alone count? If so, what about that most unnecessary of mutilations - male circumcision? On the other hand, XYY people may be considered intersexed, but grow up as unremarkable men and father children, without ever realising that they are 'abnormal'.

The question of informed consent is not itself straightforward. No one suggests that children should not be given treatment for cleft palate, strabismus and host of much more rare conditions - and parents who refuse to allow their children to have cochlear implants are considered reprehensible. On the other hand no one who has been treated for such conditions is known to have expressed dissatisfaction, while cochlear implants may be validly considered as placing too much reliance on a mechanical contraption. Genetic engineering complicates the question even more, as it becomes possible to insert supposedly favourable genes into the fertilised ovum.

Diamond has been widely quoted as saying "No . . . . . study shows that 'normalising surgery' does more good than harm"(4) We have a problem with the null hypothesis here. Studies that set out to show harm have been proven. No study that sets out to show good results have been proven, but no such studies have been done. In fact, he has been misquoted. He went on to write ". . . . the large - scale studies that could confirm this have yet to be done. While only a skeptical premise is warranted - that is, that we do not know that surgery does more good than harm - it suffices nonetheless to justify a moratorium on neonatal surgery [for ambiguous genitalia.]"(5)

It has been fashionable to accuse the medical establishment of imposing their power on people, even of inventing something called 'gender dysphoria' to increase their own wealth - to create a demand where none existed before, rather than trying to provide answers to those in need. It is also suggested that surgery is provided to please the parents, but most parent's worries are for the furture well-being of their child, in a culture that is diabolically cruel to those who don't fit neatly within it.

Can anyone bring up a genderless child? A child like Joella is vastly different from a baby with an enlarged clitoris or micropenis. The problem is even more complex for those who are hermaphroditic. Yet none of us knows at the beginning how our children will turn out - and would we want to anyway? In the end, whether we are Money in 1975, or Diamond in 1998, we can only provide the best care that we can according to the knowledge of the day.

The bottom line is expressed quite clearly: "Long term follow-up in other cases is needed" and "future reports will determine if we are correct"(2)

In other words, we have a second set of guinea pigs. It will be shameful, however, if we don't take the opportunity to gather as much information as we can, and the medical profession's record on keeping statistics is less than satisfactory. While in America, hospitals are independent private ventures, follow up care and data gathering is not a feature of the British NHS.

What is more disturbing is the lack of professional knowledge. To quote Professor Charles Brook, of Great Ormond Street Hospital in London: "The average hospital in Britain is only likely to see a baby with ambiguous genitalia once in every three to 5 years and the trouble is that by that time all staff who have been involved in the previous case have all left, so its a very lonely business for the parents."(6) Yet there are many other, even more rare, paediatric phenomena with which the medical staff have no problem at all.

References.

  1. Intersex Society of North America. <http://www.intersex.org>
  2. Diamond, M., Sigmundson, H.K., (1997) Sex Reassignment at birth: A Long Term Review and Clinical Implications, Archives of Paediatric and Adolescent Medicine, 151, 298-304
  3. Money, J., (1975) Ablatio Penis: Normal Male Infant Sex-Reassigned as a Girl. Archives of Sexual Behaviour, Vol 4, No. 1 pp65-71
  4. Moratorium on Intersex Genital Surgeries, ISNA News, <info@isna.org> reprinted in Gendys Journal, 4, November 1998.
  5. Diamond, M., (1998) Paediatric Ethics and the Surgical Assignment of Sex, Journal of Clinical Ethics, 1998 9(4):398-410
  6. Dark Secrets: Sex Unknown, Television programme, BBC2, 13th. September, 1996.
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