Quote:
|
As I see things now, doctors routinely perform infant genital surgeries without legal review. Intersex is one of the few areas of medicine where the shame and secrecy is so great that intersex people have profoundly limited legal rights. And the general cuture surrounding intersex issues is also pretty bad. In many areas, the involuntary treatment of children or "wards of the state" is subject to judicial review. I am thinking particularly about judicial commitment proceedings for the "mentally ill" and other youth justice matters. I think that doctors who want to perform infant genital surgery should be required to bring the matter before a judge for judicial review before the surgery. I know that Emi is thinking along similar lines. We really, as intersex people, are so far behind the times, that we lack even the most basic of judicial rights usually granted to people in democratic societies who are being involuntarily treated. Now if the state legislature wants to define intersex as a medical condition for purposes of protecting intersex children, that is perfectly acceptable to me.
|
I saw Emi's presentation (off-line as I was returning home during her actual presentation) I didn't comment on the practicality of it then, and didn't the other day when Peter sent me a copy of the email Emi had sent previously. My silence on it was for several reasons, but mostly because I don't think it is a viable solution and it's not an original idea. See
http://www.bodieslikeours.org/research/consent1.html for where it came from.
I don't however think it is a practical solution for many reasons. The main one is medicine is regulated by both the state and at the federal level to a certain extent. This would assume all states would adopt such a measure which is unlikely. The end result becomes a situation where parents go doctor shopping to another state. As much as I would like to see surgery come to an immediate end, it would be even worse if doctor shopping takes place and children end up in the hands of someone who has never done similar surgeries. Another reason is the intersex community does not yet have the sheer numbers and funds to match the Am. Med. Assn which would fight this tooth and nail at the present time. You can offer up the FGM federal legislation as evidence to the contrary, but that piece of legislation is largely symbolic because FGM as they defined it was not occuring in the US at licensed hospitals.
Seeing change occur will happen with education and changes to the medical protocol as it currently exists. Doctors who give true informed consent and are frank about the lack of follow-up care, doctors along with mental health caregivers who encourage openness among parents to end some of the shame and secrecy. Educating society to the best we can that human beings come with a variety of differences. Educating parents that there is no rush and that our chromosomes and genitals are generally not on display. Educating parents that being different doesn't always lead to shame and stigma on it's own, but it is the treatment of 'differentness' that creates shame and stigma. Legislation will only add to this sense of "differentness"---and that is legislation that is intersex specific such as in GENDA or legislation that requires a standard of treatment as suggested by Emi. In twenty years from now, I'd much rather get a letter from someone just coming of age asking why we encouraged her parents to leave the decision to her rather than one that asks why we legally prevented a decision to be made. It also reeks a bit like the religious fanatics who are trying to influence the case in Tampa where the woman has been brain dead for years but they filed against her next of kin (her husband) to prevent him to allow her peaceful death.
One piece of legislsation I would support and it has been kicked around by some in an actual position to force it through on a state level is requiring true informed consent and provision of actual diagnosis (or the work being towards reaching one), access to studies on all aspects of the condition, referrals to peer support, and access to qualified mental health care. While this, like FGM would also e mostly symbolic because there would no way to legally enforce it, it does leave the door open for malpractice suits at a later date if not followed. It also shifts the burden of proof onto the physician, not a lawyer, and not the parent.
Until we make it socially okay to have a queer body, whether physically or chromosomally, all the legislation in the world will not bring an end to shame and secrecy. As I've mentioned several times already, the only people that would benefit from having intersex legislated in the manner suggested by lambda letters (not to be confused with lambda legal) are those who seek to co-opt our experiences for their own benefit and use without having an intersex condition. I find that both insulting and demeaning to the experience of those here with intersex conditions and to those who struggle with shame and secrecy privately.
Betsy