Who is Intersexed? new thoughts for the new year

Yesterday, I finished the book "Intersex, for Lack of a Better Word" by Thea Hillman. I found it very thought provoking. Hillman was born with a case of Congenital Adrenal Hypreplasia (CAH) so mild it was considered borderline. As such she had "normal" female genitals and did not undergo any surgeries as an infant. She repeatedly mentioned in the book that she often was unsure whether she really was intersexed, and sometimes felt she shouldn't use the label. This presents an interesting point. Intersex in really an umbrella term used to cover a wide variety of medical conditions that have very little in common except that they all result in a body that is biologically neither male or female. While the most visible intersexuals are those, like me, who were born with ambiguous genitals and had them surgically mutilated as an infant, but this does not mean that those with more hidden conditions are any less intersexed (there are many people out there who are intersexed and don't even know it). Some women with Turner's Syndrome (just one X) do not see themselves as intersexed, yes they have unusual sex chromosomes, but they are not hermaphroditic. I have even heard of a provocative button that asks if xxy (Klienfelter's Syndrom) is intersexed since depending on how you look at the chromosomes, they could be totally both male and female, not necessarily a hermaphrodite (the same could also be said of chimeras and some mosaics). As a mosaic with a complete x chromosome and my second sex chromosome made of segments of both x and y, perhaps I also fall into this category. In short, biology does not determine who is intersexed, people (usually doctors) do. It is doctors who decide which bodies are so ambiguous that merit medical intervention. It is often this shared pathologized experience, with repeated examinations and often losing all sexual sensation due to surgeries, that brings intersexuals together to find support and form an intersex community and movement. However this is not always the case. Some intersexuals (like those with Complete Androgen Insensitivity Syndrome) appear normal at birth and are not mutilated, so how do they fit into this paradigm of community through shared experience? Hillman points out that we all have different experiences, resulting in different emotional issues that affect our identity. Some intersexuals have more in common with the fat acceptance movement (both are told they are not attractive and encourage to change themselves, but feel fine the way they are). Others are emotionally more similar to those with disabilities (both are in world built around assumptions and expectations that they physically cannot meet (heterosexual intercourse, in this case). Also, many intersexuals are psychologically very similar to sex abuse victims (both had others preform invasive acts on their genitals without their consent). So, what is intersex and who is an intersexual? Like all questions involving identity politics, you will get many different answers. I think the best answer is an intersexual is someone born with a condition that makes them not fit into societies catagories of male or female and who chose to take on the label of intersex as a part of their identity and want the community and support that goes with it.

Christmas Wishes

When I started this blog 4 months ago, I was unsure what sorts of reactions I could expect from people. In spite of this uncertainty, I wrote and invited family and friends to read it, and slowly more people started following. I was amazed and overwhelmed by the acceptance and supportive feedback, I felt so loved. I just wanted to say thank you to all intersex allies out there, your support is more appreciated then you will ever know. in short, I hope you all have a very merry Christmas and a happy New Year.

legality of intersex surgery

Non consensual genital mutilation is ethically abhorrent, this begs the question, is there any grounds to render it illegal?

To drag their misguided surgeon to court for restitution, and perhaps set a legal precedent against genital mutilation is a pipe dream for many intersex activists. The trouble is that it is very much an uphill legal battle. Since intersex surgery is accepted medical procedure, it is not considered malpractice. Also, since the surgery is done on infants, by the time they are mature enough to realize what has happened and speak out, the statute of limitations has long passed. Because of all of these difficulties, it would be hard to find a lawyer to take such a case. It would also be almost impossible to find expert testimony, doctors know the cost, both financially and professionally, of a lawsuit, and will circle the wagons to protect their own. They have been doing this to the intersex community for decades, in spite of a warning by the Yale Law and Policy Review that the conditions for consent are arguably not given.

A favorable legal trend for intersexuals might be starting. In Germany Christiare Volling successfully sued the surgeon who removed her uterus and ovaries without her consent.

With a favorable lawsuit seeming highly improbable, there has been some movement to create legislation to change this. An example was an attempt to add intersex to the Federal Prohibition of Female Genital Mutilation Act. So far congress has not taken notice of the issue.

Right now there is only one country in the world that has made intersex surgery illegal, Columbia. They declared that intersexed people are a minority that need special protection against discrimination and harm from their differences. The Colombian Constitutional Court claims that parental consent depends on the urgency of the situation, the invasiveness of the procedure, and the age and autonomy of the child in question. The Colombian model allows parents to consent only if all the risk, and alternatives are made known, and even they they have to give consent in writing several times over a period of time (not panicky decisions), and they cannot consent after the child turns 5. We can only hope that the US will see the wisdom of the Columbia law.

A Rant About Surgeries

Surgeons are constantly trying to "improve" intersex surgeries. They see intersex complaints as a challenge to improve their technique, blind to the pain and suffering they are causing.

Granted Intersex surgery has come a long way from its origins in the 50s which consisted of amputating the clitoris/penis (whatever, it's really the same organ). However the outcome is still just as terrible. No doctor can dispute that when you cut someone, your body patches it with inflexible, unfeeling scar tissue, and in an area with such high nerve concentration, some nerves inevitably get severed as well. As a result most people who have undergone this surgery are rendered completely inorgasmic, the victims of social fears and medical hubris.

This is not to say that I am totally opposed to surgery. Once an intersexual is old enough to make an informed decision, and want to bring their genitals more in line with their gender identity, they should have every right to do so, and I wish them luck with that. However it must absolutely be their choice, and not their panicky parents. However most intersexuals (at least the outspoken ones, myself included) have a somewhat ambiguous gender identity and are very hurt and angry about what was done to them, feeling that their ambiguous genitalia was better suited for their gender identity, but had them irreversibly taken away.

Even if the surgery was perfect (they often don't work very well anyways and usually require follow up surgeries) with no loss of sensation, and identical appearance and functioning compared to "normal" genitals, I would still say it is unethical to operate. Informed consent must be given by the individual. Genital "correction" is not like fixing an infants club foot or cleft pallet, it has lifelong consequences for the individuals sexual enjoyment and determines how society will perceive them. As such, parental consent should not be enough to authorize such a procedure.

Not only in there a problem of consent, there is also a problem of gender. Infants cannot express a preference for one gender or the other. If the doctors and parents make a mistake in their gender assignment it is far worse if they have surgically removed the parts that were desirable and would have made the transition much easier thus increasing anguish in an already emotional situation.

I also question why such surgeries are needed. Granted some situations, like mixed tissue gonads which go cancerous 98% of the time need to be removed. However, infants are not experiencing any confusion or emotional pain over their genitals. It's everyone elses comfort level that is being considered and not the one person who will be most affected. It is the heteronormative expectations of society that ultimately win.

My intention here is not to demonize anyone. Both the doctors and parents have totally charitable intentions. Parents are concerned that their child will be bullied and harassed and consider themselves a freak, not to mention the old panicky parent concern with locker rooms. These are all valid concerns. I think the Intersex Society of North America offers the best solution. Without operating, raise the child with one gender so they can function in society and hopefully avoid social ostracising. However they should also be open to the possibility they may change, and when they are old enough, let them make a decision about what they want. Suicide is also a major concern, the rate is very high for intersexuals. Doctors and parents think that having unambiguous genitals reduce psychosexual confusion and depression and reduce the rate of suicide. This argument does not hold water. The few case studies and follow ups out there suggest that unwanted surgery actually increases the chances of suicide by increasing the sense that you were so freakish, ugly, and unacceptably abnormal, that you had to be changed.

In short no one should be subjected to nonconsentual, purely cosmetic surgery, which, I would argue, is a breech of the Hippocratic Oath. I urge all my readers to inform themselves on this issue and to speak out about it. On behalf of the intersex community, I thank you for listening to this rant (that is already more then most of the medical establishment has done, most of them are too embarrassed, I think, to address our complaints head on).