Wednesday, September 1, 2010

Deaf Children, Intersex Children, and DSDs

I want to explain a division in our community, between intersex advocates and partisans of the terminology of "DSDs."

Every day, intersex children are born to parents who are shocked, lost at sea. "How can this be happening," they cry, "I've never even heard of such a thing." And this, this is the crux of the problem. It's this problem of being born as strange little changelings to our parents that perpetuates infant sex assignment surgery, despite the ever-mounting evidence that the results are frequently unsatisfactory. And it is the issue of how to approach infant sex assignment that lies behind our division into two warring camps: those who say the term "intersex" is overpolitical and imprecise and that the "proper" term is "Disorders of Sex Development," and those of us who say we are not disordered, and take pride in calling ourselves intersex people.

The intersex and DSD camps are constantly battling now, at least in the U.S. The thing is, this is not unique to our community. It is something we share with others. Similar controversies erupt around Deaf children born to hearing parents, for example, or, in some cases, children of color adopted by white parents. This commonality is very instructive--controversy arises when children of marginalized status are born or reared by parents who are privileged along that axis of identity.

Consider the organized Deaf community, which centers around institutions and locales where signing, ASL, is the norm. This Deaf community experiences itself as a linguistic minority, rather than "disabled." Members of such Deaf communities are not impaired in their daily lives. Able to communicate in their rich language with those around them, they are enabled to study and grow, and develop a strong culture, literature, and traditions.

The problem is that children who cannot hear are born to hearing parents all the time. And those parents are shocked, at sea. Some hearing parents don't want to give up on the future they had imagined for their children, and say, "I just want my child to be normal!" And "normal" for them means having their child live and go to school in a "mainstream" hearing context, and focus on learning to speak. It means getting cochlear implants and focusing everything on trying to make sense of a bit of sound. It means that these deaf children spend their days isolated, surrounded by people who can't understand them, and spending countless hours both in school and out trying to learn how to speak words they cannot hear, instead of quickly and easily learning a visual language they have the sensorium to perceive, and spending their hours at school learning math and history.

The signing Deaf community aches for these isolated children. They see the children as disabled by their parents, failed by the professionals who surround them, misunderstood by doctors. And the Deaf community pleads: please, parents, accept that your child cannot hear. Make them part of the Deaf community by allowing them to learn Sign from infancy; become part of the community yourself by learning Sign. Some parents take the message to heart and find their lives much enriched; others resist--but at least the message is out there, and Deaf children become aware of it soon enough. You can see a person born without hearing as defective, disabled, in need of medical alteration. Or you can see them as simply different, Deaf, members of a rich minority culture.

The split between the medicalized and cultural approaches to Deafness are parallel to the split between the advocates of DSD terminology and intersex activists, but the context is different, because there are no organized intersex institutions, no consolidated intersex neighborhoods. We have no Gallaudet (the excellent Deaf university in D.C.). The situation for intersex children is more like. . . well, imagine if all Deaf children were given forced cochlear implants and their families told to hide the equipment, never to let anyone know their children couldn't hear, and to avoid even acknowledging to the children themselves the issue of their not hearing. The parallel's not exact--it's harder to conceal sensory impairment--but it does give a sense of where we stand.

Most intersex/DSD advocates of any stripe share something in common: we want infant sex assignment surgery to be curtailed. We want intersex children to be allowed to retain their sexual sensation, any chance at fertility, and the right to have the gender identity that they develop be respected and recognized. Let the babies grow up, we plead, and decide what surgery, if any, they want. But the intersex advocacy community is small and diffuse, as compared to the Deaf community, and so far, we haven't gained much traction. Parents of intersex babies have never heard of us, and doctors dismiss us as a few disgruntled outliers. So every day in the U.S., babies continue to receive sex assignment surgery. Most of us continue to be raised in shame and utter secrecy, our genitals never looking "normal" after surgery anyway, but insensate, in pain, and often being reared as a sex we don't feel is ours.

The situation is bad, and something needs to be done about it. And this is where the small pool of intersex advocates splits. Who should we turn to for help? How can we improve the lives of intersex people? Will professionals save us? Or do we save ourselves, through community building and selfadvocacy?

Those of us who identify as intersex activists, in those terms, follow the route familiar to all civil rights' movements (and a fair number of us have been involved in LGBT politics). The basic model for improving marginalized lives, in the civil rights vein, is to take pride in one's identity, however stigmatized by the majority, and then to take action to get the majority to treat one's community better. The route to social change is rooted in embracing selfhood, and then moves on to a familiar array of tactics: be visible; protest; write letters to the editor, one's senator, one's pastor or rabbi; seek protective legislation, etc. etc..

So we act up. And one of the things we do is let people know we are very dissatisfied with how we have been treated by doctors. Unsurpisingly, many doctors have not appreciated this. It's damaging to one's selfimage, to listen seriously to a person who says, "You were not my savior or my hero--you hurt me, you did me wrong." Far easier for a doctor to dismiss our small if vocal group as a radical fringe, or perhaps to see us pityingly as the victims of older forms of surgery, very unlike the babies they now save from freakish lives with their newer, shinier surgeries.

And here's where advocates of DSD terminology chime in. They say, "We simply cannot afford to alienate the doctors, because it's the doctors' actions that make or break us. We need them to stop performing unnecessary surgery on babies' genitalia. And the only way to do that is to convince doctors that we are sane and not crazy. We need to be respectful to them, so that they will listen to us, and we can appeal to their desire to improve treatment." And so the advocates of "people with DSDs" are the political advocates of depoliticization. They argue, "Intersex activists are too far out there. Doctors see red when they hear the term 'intersex' now. Parents, too. Parents don't want to hear that their kid is some other sex, like permanently. In fact, lots of people in our own community are uncomfortable with the term. They don't want to be part of some group lumped together with queer activists, they just want to be seen as people."

I don't want to be seen as oversimplifying the DSD advocacy position--there are more nuances to it. You can read an eloquent defense of the terminology that is respectful to intersex-identified people here. But basically, the position is one of not rocking the boat. We should look to professionals, to doctors, to save us. If we're rational and polite and deferential and apolitical in our presenting of our case to doctors, then in time they will change the treatment regimens, and parents will listen to the medical professionals.

The thing is, similar lines of argument have been raised in the past. I recall in the 1980s, when many quiet, marginalized gay-identified people, living without protection from any nondiscrimination policies, looked to professionals to save them. Political activism, they argued, just alienated the populace. They looked to scientists to save them by finding the "gay gene." But it has been the brave actions of masses of LGBT people coming out at home and work and being politically active that have led to the gains in protection for LGBT people and same-sex couples, not some scientific discovery.

Or consider Dr. Martin Luther King, Jr.'s famous 1963 "Letter From a Birmingham Jail," an impassioned defense of nonviolently confrontational civil rights activism. The letter was addressed to a collection of moderate clergymen who had appealed to King to stop pushing sit-ins and to wait patiently for the legislature to produce civil rights protections. In due time, these clergy argued, if you are polite and trusting, these professionals will act. Just stop agitating, stop alienating them, be patient. But King was right--it was continuing civil rights activism that led to the enactment of the Civil Rights Act of 1964. I believe the lessons of our history are clear: if you want your people to be treated better, then take pride in who you are and demand your rights. And that is what I intend to do.

It's for this reason that I do not identify with the term "DSD." I am not disordered. I was born as nature intended me, and I feel no shame in that. I am an intersex person, and I personally have no interest in having my genitalia surgically altered. I shall not sit meekly by and wait for professionals to quietly change their minds about how to treat the young members of my community. I am going to be noisy and public in my demands, and I am going to work with our nascent social movement. My goal is to make the public aware that we are here, and that infant sex assignment surgery is making things worse rather than better for so many of us. It's public pressure and a shift in public opinion that will finally end the era of attempting to erase us medically. We will be recognized, respected, and no changes to our genitalia will be made unless and until we reach an age where we can request them, uncoerced.

In the future, I hope, when intersex babies are born, their parents, though probably still feeling shocked intially, will know that we are out here, leading happy lives. They can embrace their children--see them as members of a minority, yes, but also as lovely, not defective. They can learn from their children, about privilege and marginalization, to be sure, but also about the vibrance of human diversity. And these children will be able to connect with our community, help build our culture as a people, and contribute to the enrichment of our nation's web of identities, as today's Deaf community does.


  1. A great piece Luminus. I fear that biological diversity in all its rich and beautiful entirety faces another great challenge with the advent of biotechnology.

    Medicine and its reliance on 'statistical science' has really got to the point where it recognises a very narrow band of statistical 'normalcy' and 'disorders' every imaginable departure from that band.

    I do worry that that as the option of none consensual cosmetic surgery disappears, the abortion option, generally performed for no better reason than the Foetus not matching statistical norms, will be seen as an increasingly acceptable option.

    All the best. :-)

  2. I'm afraid the word 'intersex' leaves people like me out in the cold, simply because 'intersex' is defined as 'between sexes' - people who have elements of both sexes. I don't - I have only some elements of one sex, not any of another.

    I agree that the language of 'disordered' is far too negative. But I think it's better than 'intersex', less likely to lead to incorrect assumptions.

    I would like to see something, rather than 'Disorders of Sexual Development', along the lines of 'Varied Sexual Development'. Something that doesn't make our conditions into negative things. I agree with you that I was born the way nature intended me and I don't want to change via surgery.

  3. "I am not disordered. I was born as nature intended me, and I feel no shame in that."

    /me stands and applauds. Another great piece, Cary.

  4. Hi Anonymous :-)

    I hope you read this and I'm sorry you take that meaning from Intersex. As a director of OII Australia and manager of OII New Zealand, I can promise that we don't see it that way.

    Here the definition we use in formal submissions:

    The term Intersex was adopted by science in the 20th century, and applied to human beings whose biological sex cannot be classified as clearly male or female. An intersex person may have the biological attributes of both sexes or lack some of the biological attributes considered necessary to be defined as one or other sex. Intersex is always congenital and can originate from genetic, chromosomal or hormonal variations. Environmental influences such as endocrine disruptors can also play a role in some intersex differences. The term is not applicable to situations where individuals deliberately alter their own anatomical characteristics.

    You are truly included and we would have it no other way.