“Genital remover-meetings – dates 2011/2012”, “Dogs are better protected from mutilation and castration than a child.” Whoever searches the blogosphere for the term “intersex” will come across these statements made about pediatric surgeons or endocrinologists. The subject-matter however not only fits well within the slogans of radical groups in the area of rare diseases, but has now made it to the highest levels of German politics. In the summer of this year, the German Ethics Council dealt with an expert consultation on the topic of intersexuality and the history of people who have spent life in a state of being between that of a man and a woman. A few weeks before that the Greens brought forward a motion in the Bundestag regarding official forms, whereby the insertion of more than two options on official forms for choice of gender would be promoted, and “that the prophylactic removal and changing of genital organs of intersex children should be avoided”.
“‘Should medically intersexually-born children be disambiguated?” was the question that occupied the Ethics Board. In around one in three to five thousand births in Germany it happens that the doctors cannot explicitly define the external gender because of indistinct features.
Hermaphrodite or intersex people are now called in accordance with the consensus conference of 2005 in Chicago “patients with impaired sexual development”.
Clueless in psychotherapy treatment
In many cases those affected do not even know what’s “wrong” with them. Many psychotherapists are visited by people who cannot identify with their role as a man or woman and have no idea that their problems are not only in the mind, but also lie below the abdomen, for all too often “well intentioned” doctors snip and sew around at the genitals of young children, without documenting their surgical interventions. “Not a word to the child” was still the motto until a few decades ago. Through upbringing alone can – so said the former school of thought – from an “intermediate being” a proper woman or man be made. The psychotherapist is then faced with the problem “How do I tell my patients?” The danger that intersexuality falls into a taboo zone is great.
It’s not only the set of chromosomes, but also numerous hormone control components that determine for facial hair or breasts. This makes it possible that, despite the distinct sex organs present, geneticists find an unmatching gonosome set in the cells. An example of this is the “XY female”. Often the problem comes to light only later: At birth all seems fine, until it’s only in puberty that amenorrhea, lack of pubic hair and significant virilisation indicates androgen insensitivity.
But when a partial androgen insensitivity acts so early that doctors have been exasperated by the question “boy or girl?” already at the time of birth, in the past a large clitoris was on many occasions pruned, testes or ovaries removed. According to a macabre surgeons’ slogan, it was said to be probably “easier to dig a hole than build a pole”. Thus, in most of the “doubtful cases” a female was fashioned. Only slowly it became clear that the doctors had indeed corrected the anatomy, but left many traumatised people in their path – with no chance of a fulfilling sexual and social life.
Phrases such as ” for psychological reasons, the cosmetic correction of the external genitalia should be done as early as possible, usually within the first six months of life” still exist in the Guidelines of Pediatric Surgery. But is the goal of a “harmonious identity including genetic, phenotypic and socio-cultural gender” always achieved by this? Only the massive protest by self-help groups somewhat changed the principles of early irreversible gender determination by operation procedure.
For several years, doctors and patients have sat together and tried to develop guidelines to help both sides. Since 2004, the Federal Ministry for Education and Research has promoted “Network Intersexuality”, which is made up of bioethicists, physicians of different specialties, obstetricians and psychologists as well as representatives of self-help groups.
Postponing irreversible changes
Most important, almost all are agreed, is an intensive diagnosis of intersex infants, as the causes are too varied for simple advice to be able to really help doctors, parents and children in any way. Decisive intervention in the forming of anatomy should, according to a publication of the working group from the year 2010, be postponed as far as possible, in order to give the child the oportunity to be involved in the decision. So, for larger operations this would be at twelve to fourteen years. Good outcomes with vaginaplasty done in puberty at the earliest have been reported by Susanne Krege of the Alexianer Hospital Maria Hilf in Krefeld, Germany.
The opinions on when the best time would be for major decisions still vary widely from one another. Martin Westenfelder of Helios Clinic Krefeld for instance vehemently defends the competence of the physician in making an early decision as against making “no decision”. Today, he argues, there would, in contrast to the sufgical interventions done twenty or thirty years ago, be barely anything “broken”.
Continual postponement until biological adulthood is not possible for all sex-determining medical procedures. Children who are born with partial androgen sensitivity and raised as girls should get hormone-suppressing drugs before (!) puberty in order to suppress development towards malehood. Intersexuals with androgenital syndrome often have, if left untreated, problems with height growth and life-threatening salt loss.
Self-determination over one’s bodies
In the collaboration between self-help groups, doctors and psychologists, a set of principles has crystallised ever more clearly which do away with the previous “operate and educate accordingly” norm. What counts here is that the intersex child is not a medical emergency case and has a right to self-determination. Parents have a deputising position of power in the decision. So that the child himself or herself can later sexually define his or her body, all interventions and actions have to be documented and should not be kept secret.
Even if a gender-neutral upbringing is hardly possible, the presence of ambiguous genitalia does not automatically equal a disorder in mental and sexual development. Would a rethinking of old morality not be an alternative to traumatic surgery in childhood? In so far as this relates to the plans of their government, British nationals soon will no longer need to make a choice between “male” or “female” in their passport; this is one option that Australia for instance has already implemented.