QD Conference Proceedings: Panel: Is Intersex a Disability? – Lessons from Disability Activism in Building the Intersex Movement

Moderator: Sumi Colligan
Panelists: Cheryl Chase, Diana Courvant, Emi Koyama (comments unavailable for transcript)

Edited from Real Time Caption transcript by Eli Clare

Sumi Colligan: [announcements}

Cheryl Chase: We are going to begin with two short video clips. One of the most important contributions of the disability rights movement was that in the past the only narratives about people with disabilities came from professionals discussing our lives. And the disability rights movement tells narratives where we talk about our own lives. [unreadable]

Video: The finding of ambiguous genitalia in the newborn is a medical and social emergency. Once a gender assignment is made; the abnormality must be corrected. The goals of reconstruction are to reduce the size of the enlarged clitoris. [unreadable] and make the vagina as cosmetically normal as possible. Treatment of the clitoris depends on its size and the preference of the surgeon.

Video: Again, I can attest to how the doctors that I was taken to in Illinois in 1985 [were trained]. [It] was first my pediatrician who referred us to the pediatric endocrinologist at the University of Illinois Center in Peoria, who I know studied under a doctor—another pediatric endocrinologist at Northwestern who had studied under John Money. You see the genealogy. There’s John Money, and he taught the next generation, and he taught the next generation. My doctors —who were women— and so Hopkins is where this all comes from, this whole practice. And so it’s like straight from the top.

Video: You know, this is not unusual that I had my clitoris taken away from me without my knowledge. {interjection: They say that they just make it smaller.} That’s what they say. I didn’t have any measurements at the time. I didn’t present any physical ambiguity until I was 12 years old. I was raised a girl, and when I was 12, my clitoris started to grow, and I knew that other girls probably weren’t experiencing exactly the same changes in their bodies, but I experienced it as normal anyway. And like I said yesterday, it is difficult for me to say, not only noticed it. I not only noticed the size growing more prominent, but I loved it. I had this wonderful relationship with it. I think I had maybe six months before surgery from the time that I noticed it and started to love it to the time that it was taken from me. It’s like this time in the pleasure garden before the fall, you know. That was 1985. It’s only 11 years ago. Yeah. This is the specialists.

Cheryl Chase: Can we have the lights on?

Sumi Colligan: Okay. I’m going to be introducing the panelists and then talk a little bit about my own interest in intersex issues. Cheryl Chase is the founder and director of Intersex Society of North America (ISNA). She also produced a video called Hermaphrodites Speak. Her organization ISNA was awarded the Felipa de Souza Human Rights award in the year 2000 for their human rights work. In 1999 the Columbia Constitutional Court created protections for children based on ISNA’s amicus brief. Emi Koyama to my left.

SC: I teach cultural anthropology at the Massachusetts College of Liberal Arts. The way in which I became involved in this particular panel is that I came across an article in [unreadable]. It might have been a year ago. The article was not written by someone who was intersex, but it did talk about Cheryl Chase and the objectives for her organization. And I was immediately struck by some of the parallels with disability issues, particularly in terms of the normalization and disciplining of the of bodies and the containment of desires. And then in March of 2001, I guess, a year ago, March, there was a gender and disability conference at Rutgers and I decided to explore the intersections of gender and intersex issues by presenting a paper there. In the audience, somebody asked me how our own disciplines informed our work. And I felt like in order to be true to my own discipline, that I would really need to contact people of ISNA and speak to them one-on-one. That I could not rely on second- and third-hand accounts as I had been doing for the paper that I had prepared for the conference. So I sent them the paper that I wrote, got some feedback from them, and last summer I made an effort to contact Cheryl Chase, and she invited me to attend her grand rounds presentation at the Oakland Children’s Hospital. And we spoke about the possibility of creating a panel in which we could have a dialogue about some of the overlapping connections between disability issues and intersex issues. And so that’s how this all got started.

SC: And so without further ado, we will continue. I think primarily what we are going to do is have a dialogue here between the three people [Cheryl Chase, Emi Koyama, and Diana Courvant] and me. And we wanted particularly to leave a lot have time for question and answer session so we participate a broader dialogue.

Cheryl Chase: I want to start out by asking, who is familiar with intersex. Almost everybody. Great. How did you learn about it?

From Audience: ISNA.

Cheryl Chase: Thank you.

From Audience: Emi’s class.

From Audience: PBS documentary.

Cheryl Chase: Great. Article in a queer paper in Vermont. Other people in the queer community. Intersex partners and roommates.

From Audience: You’ve been everywhere.

Cheryl Chase: Thank you. So I don’t have to go too much into what intersex is. Anybody who is born with a body that somebody decides is not male or female. Intersex is unspeakably freakish and to help the family is to make it disappear. It might be with surgery, hormones, etc. People can’t think about it, speak about it, or know it. Our agenda is to tell doctors and other people that intersexuality isn’t a problem of gender. It’s a problem of stigma and trauma. That when a pediatrician is treating a child with this condition, although the parents are in emotional distress, they have to realize the patient is the child. Professional mental healthcare for the family and the child is essential. Honest and complete disclosure is good medicine, and most areas of medicine have come to realize that in the past 20-30 years. And that all children should be assigned as male or female, but that doesn’t require them to have genital surgery. We are going to have a free form discussion about the ways that our work is informed by disability right movement.

Emi Koyama: [comments unavailable]

Diana Courvant: So I guess I’ll go. Emi was talking about intersex and disability not having an intersection. I tend to think of it as a confluence. The idea of rivers merging. Those are intersections too. You can see those two rivers are part of one river system.

DC: I see a lot more usefulness in that model. I came to intersex activism through trying to understand myself as a non-intersex person. As a transsexual woman, I have experienced a lot of labeling and modeling of myself, people trying to understand me without actually talking with me, deciding who I was based on their assumptions of who I am.

DC: And so when I started reading about transsexualism and transsexual people, I got the smorgasbord of their drag queens. And I came to understand there was a lot more to physical sex than the basic male and female that existed out there. And I came to understand how the shaping of intersex bodies in a real physical way is also a shaping of the constraints of my physical sex and also my gender. And so I came to understand that we cannot address sexism without addressing these issues that are raised by how our society chooses to treat intersex people. That’s how I got here.

DC: I didn’t get here easily. I think that it’s been probably difficult for Emi to have me as an ally. Like anybody, I’m not perfect. As I was reading and talking about this more and I got a chance to speak publicly about it and raise these issues, many intersex people came up to me to say, “God, I’m so glad you addressed this, and thank you for speaking out about this.” And when I met Emi, she didn’t say, “Hi, I’m intersex.” I allowed my biases: people who are intersex come up and tell me, so she must not be intersex. This assumption of normalcy, which was operating in how I was treating Emi, is a really important dynamic that was difficult for me to overcome, even as knowledgeable as I am about how people assume normalcy in terms of heterosexuality. And assume normalcy in terms of ability. The idea that stairs are normal. How did that come to be? This assumption of normalcy that needs to be addressed in all these different systems: how we treat queer people, intersex people, and people with disabilities. I think that was an important part in me coming around.

Cheryl Chase: When did I first began to realize [the connections between disability and intersex issues]? Does anybody know the work of Asaka Yuho? She brought independent living movement to Japan. And I happened to live in Japan and spoke Japanese. I met her in the U.S., though, when she was visiting. She talked to me about what it was like for her to grow up in Japan with no disability movement. She has osteogenesis imperfecta, and doctors performed repeated painful surgeries on her because they wanted her to be tall. And eventually she realized that being short isn’t nearly as horrible as having all these things done to you. And she came to the U.S. And learned disability politics at the independent living center and brought it back to Asia. And I realized although I never thought of myself as having a disability, the kind of politics she introduced me to were exactly what I wanted to do around intersex. Who should have the right to say what our bodies mean and what we get to do with them? Around intersex the medical answer has been your genitals belong to your parents, and the purpose of your genitals is for us to say what sex you are. But I think that my genitals should belong to me, and I should be allowed to do with them what I please. [applause]

Diana Courvant: I had something just to play off what Cheryl was saying. The idea of ownership is, I think, a really key one in understanding the responsibilities of non-intersex people towards intersex people and the intersex activist movement. It’s clear to me—and this is somewhat informed by my interest in sex workers rights movement—that there are some people who society assumes ownership of the genitals of. We assume that the genitals of sex workers are there for the larger community and not for the sex workers themselves. We assume that the genitals of intersex people are the possession of the public, which can then be shaped and remolded in order to benefit people other than intersex people.

DC: It’s really important to understand that, you know, as the doctors did this, they did not consider whether or not this was good for intersex people. They considered whether it was good for parents; they considered whether it was convenient for their systems; they considered whether or not they had a letter on the birth certificate that was available to them that they felt they could use. But, you know, in long-term studies the questions “Does this create good lives; is this a good outcome for intersex people themselves” were not questions asked and are still questions unanswered. And so I think we need to understand how we’re complicit in a society that’s choosing to own intersex genitals for the benefit of non-intersex.

Cheryl Chase: I think what we want to do now is open up to a conversation with all of you.

From Audience: I’ve been one of the coordinators for this conference. I also am a transgender activist and do transgender training a lot in the health care community here, the HIV/AIDS health care provider community. I have a couple of questions. Thank you all so much for being here, first of all. I’m very glad to see that you all have made the trek to come to the conference. So thank you. One question I have is sort of: Cheryl, you said something about birth certificates [unreadable]. Is there something in the intersex movement to have “I” on the birth certificate? [unreadable] How do we deal with that on forms, aside from getting rid of forms altogether, and I’m wondering, in terms of disability, whether that is something that is present. The second part of my question is what are some distinctions in terms of intersex activism. I know the transgender movement talks about intersex issues, and I want to hear from you some of the separate, distinct issues. Thanks.

Emi Koyama: [comments unavailable]

Diana Courvant: I heard, actually, the second part of the question, that there were actually two parts to that one, and one was what does intersex activism look like today, and the other is the use of intersex activists’ writings and teachings and concepts and the existence of intersexuality in activism that’s more transgender/transsexual movement-based. So I’m going to try to tackle that very last part first. There is a significant movement of transsexual and transgender people that’s trying to go about dispelling the myths that there is such a thing as male and female, that we are necessarily bound by that, and that those concepts necessarily lead to a particular gender. And the biological basis of gender, whether it exists or not, is unproven. But as a political concept, it is useful to some and less useful to others. And so there have been people that have been attempting to prove that there is a biological basis to gender. It reinforces sex and does lots of other great things for people with power, and it does some useful things for transsexual people who want to have medical intervention paid for by the state or by the insurance company or something. And there are other people that definitely see this as a disservice to them, and often times they’ve chosen to use the concept of intersexuality, sometimes the concepts used by Anne Fausto-Sterling, as ways to prove that the male/female, man/woman, boy/girl system doesn’t work, necessarily falls apart, and that therefore transgender people shouldn’t be oppressed but welcomed as a normal and natural part of life. And the implication in this activism, because it’s left unsaid, is that transgender people should be accepted as a normal and that you were part of life, because look, there are many intersex people being normal and natural, whatever, when in fact our society doesn’t allow people to be normal and [unreadable].

DC: So there’s a huge problem in this of co-optation, without actually addressing the ramifications of our intersex system on intersex people. And this use of the intersex system to benefit transgender people without ever figuring out how that plays upon the intersex people is a tremendous problem in the transgender movement and transsexual movements right now. So there is definitely overlap in activism. It is not always done well and not always done to the benefit of intersex people. There is not necessarily an analysis that benefits intersex people in queer theory. Often times queer theory has been kind of hostile to the benefits of intersex people. And it’s important to understand that some of the places that we get these, if not from Cheryl, not from Emi, we need to read critically and see what they’re saying about intersexuality. Are they addressing issues of oppression? What purpose does the article serve? Are they writing to benefit intersex people or to reconstruct gender or to do something else? It’s important to remember that wherever we find intersex activism or writing about intersexuality, that just because there’s an oppression issue there doesn’t necessarily absolve it from critical thinking.

Emi Koyama: [comments unavailable]

From Audience: You know, I hate it when people ask me how many people are on disability, like statistics. And I thought I would never ask this question, but I’m really curious if there is any study, because I know this is something that is like under-reported so it’s hard to find statistics. I’m curious, is there any study internationally on what’s going on? Does this happen also in other countries, that doctors decide what sex the kid is?

Cheryl Chase: It’s hard to say an exact statistic, because the definition is arbitrary. Remember, I said the definition is somebody decided your body doesn’t fit. So it depends who’s deciding and how strongly they object to what you body looks like. But the minimum number is 1 out of 2,000. That’s 5 children every day in the U.S. So every medium size or larger city in North America, in the United States and Canada, has a team or multiple teams that fix intersex kids. The kind of medical interventions that we’re trying to change were designed at Johns Hopkins in the 1950s and have spread from there throughout the entire world, wherever there is modern medicine. They have in some countries a little bit more preference to make kids girls or make kids boys, but pretty much it’s done similarly every place where they have modern medicine. And you should keep in mind that this isn’t only about deciding what sex you are. If you’re born in the U.S. with a clitoris that somebody thinks is a little bit large—and the standard is 3/8 of an inch—that gets trimmed. Or if you’re clearly a boy and your penis is under one inch, or sometimes there are boys born that are completely male but missing a penis. Sometimes boys are born but missing other parts. The fact is they remove your testes, and they decide to do that, then raise you as a girl.

Emi Koyama: [comments unavailable]

From Audience: [not transcribed]

Diana Courvant: I want to throw something in here. Cheryl sometimes uses language in a way that people who are not familiar with her might take the wrong way, and she said there are these medical teams that fix intersex kids. I know that Cheryl doesn’t really mean fix, but this is the language we’re attempting to be problemtized. When you hear people say these things, you understand they might be said tongue-in-cheek, or the language the medical industry is using, and that’s not an attempt to normalize or justify what’s done to intersex kids when Cheryl or anybody else, including me, if I say something that implies fixing, is fixing.

From Audience: I have a question. I had a conversation that surprised me recently. I wondered to what extent you’ve encountered this. It’s on the intersection between intersex and disabilities [about] a parent [who] is very politically and emotionally-wise, very active in disability rights, and has a small child with multiple disabilities that were considered very severe…. The child has had to have a lot of surgery just to survive. And it was a conversation about intersex and disability, and so she said at one point something I hadn’t known about her kid. She said, “My kid is intersex.” Then she said, “But there’s been no conversation about it whatsoever because he—and the kid is definitely assigned a gender—because there’s so much going on for him.” I got the impression from her that when you’re having to make that many decisions about where the knife is going to be used and what kind of surgery the kid is going to go through, like this is a non-issue in a very wise way, but it also struck me in a way what she was saying, very ironically, was this kid is identified as so disabled that not only is he understood to be asexual, but actually he’s understood to be [without a] gender. And I wonder how many times there may be cases where actually the pressure to gender the person is almost vetoed by the extent of the disability. And I’m not arguing for equal rights to have the knife administered at birth, but to some extent start talking about intersex and disability together.

Cheryl Chase: Also I’ve seen quite a few cases where it’s true that intersex sometimes occurs with other multiple congenital anomalies. And I have seen a number of cases where the child has a number of other anomalies. But in some cases you do know, based on the kinds of anomalies, that this is a person who actually isn’t going to experience social development to a point where sex is going to be an issue. For instance, the brain is extremely underdeveloped. I saw a newborn baby like this, and the doctor was concerned with how big the clitoris is, when in fact it’s not clear the child is going to grow up to have enough of a social existence to know what that means.

CC: And you’re right. I think in the case you’re talking about, the sort of opinion of the doctors was, “Well, this person is going to be so disabled that sex isn’t going to be an issue.” And sort of both of those kinds of aspects or perspectives are really unacceptable, because we want to help that person who has a body different from other people to be able to live a life with as much quality as they can. And we can’t know, when looking at an infant, what sex is going to be like for them, whether they’re satisfied with what they’re born with or whether they would rather look more like other people. Nobody can know that.

Diana Courvant: I think the question you raise is interesting, though, in the sense that it highlights a place we haven’t quite talked about yet. That’s that intersex people, like many other sex—and I’m going to use that at the moment to mean both biological and the activity—sex outsiders are often hypersexualized and there is a conflict between the sexuality for people with disabilities and the hypersexuality for sex outsiders. And depending upon, you know, how the individual team views that problem and whether they necessarily see hypersexualization as more of a problem or asexualization as more of a problem, that can have a lot to do with how an individual child gets treated in an individual case.

DC: You know, it’s impossible to know exactly how people are feeling about that, but it’s a really important dynamic to understand, not just for intersex kids but for all of us here at this conference, because as queers we are hypersexualized, and as people with disabilities we’re asexualized, desexualized. [unreadable]

From Audience: I have a few comments for everybody to bounce off of. One piece I haven’t heard mentioned is one of the contexts for the violence done to intersex infants is the violence done to all children, which is that children are seen as the property of parents. You know, there’s no medical decision that any child really gets to make. And I see childhood as slavery. There is no self-determination. That seems like an important consideration, not like the medical system. And it seems relevant to also toss in that nobody seems to care that most boys have genital mutilation right after they’re born. Another thing is, for me, feminism was all about more than two choices. So, you know, I don’t identify as a gender or a sex. I have a body, and I want to be a whole person, and I want everybody to get to be a whole person, and I don’t think the plumbing matters that much. My vision is that, you know, nobody has to be cut unless that’s their aesthetic. The other thing I wanted to bring up, if you can bear with me talking without notes, is that I read this very cool thing in a very cool book about goat keeping, which is horns. Horned goats can be dangerous, so some goats can be hornless, which is a wonderful thing for goat herders. There is a much higher percentage of her hermaphroditism in goats. Why are these goats in the gene pool now? Because there’s a benefit, you know, when goats were wild, the big horns on the males made their nutritional requirements the same as females, who had smaller ones but were pumping out milk and making babies, and the nutritional needs would match and the herd could stay together and be safer. Menopause, that’s kind of an odd idea if you’re trying to make more people to survive the species. When there’s menopause, the older women are taking care of the younger kids and the health of the community improves. So I think of science as my potential friend, to have the right headset. And maybe there’s supposed to be intersex people. Maybe it’s this beautiful thing. I think queers—you know, there are lots of queers who make kids, but maybe queerdom was created so there could be lots of artists who aren’t trying to reproduce, but let’s raise the level.

Emi Koyama: [comments unavailable]

Diana Courvant: I think it is important to note that in whatever science fantasy land these concepts may be fun to play with. It’s irrelevant whether they should be intersex people or me on this planet. I ended up on this planet and I deserve the right to consent to what’s done to my body. I deserve to be liberated and not oppressed. This is violence, and we need to end it, and it’s a human rights issue.

Cheryl Chase: My background was in science, and my professional career was in science, and here is what I know about science and social justice movements: Science cannot tell us what values we should have. We have to decide what values we want to run our society with.

From Audience: Following that, what is the legal analysis and whether there are legal challenges [of intersex surgeries] would be useful or too narrow.

Cheryl Chase: We have put in quite a bit of thought to the law. Lots of intersex people would like to sue the doctors. Because there are laws banning clitorectomy. It’s not possible to sue because it is standard practice. If they do what they are taught do and they do everything that their community does. Even if it is harmful and demonstrated to be harmful, they are still protected from legal liability. What we have done is really making these surgeries controversial. And so if a doctor approaches parents now, and says, “We are going to perform this surgery on your baby. It’s necessary. It’s safe. It’s effective. And here sign this consent form, which is the same one that’s used for tonsillectomies.” The parents then are in a position to sue the doctors for fraud because they did not inform them. The doctors are scared now. I spent four days at an international conference focused on intersex, including two days with the National Institutes of Health, and that was a big topic. The surgeons were saying that we feel like we are standing in front of firing squad. Obviously you are going to continue do surgery because there’s no other answer, but you are going to have these informed consents that you use to insulate yourself from lawsuits by the parents.

We did win this case in Columbia in 1999 (you can read about it at our website: www.isna.org) in which the constitutional court found that surgeries on children raised important human rights issues. They didn’t prohibit the surgeries, but they said that parents are in a poor position to make these judgments because they don’t know what it is like to live with intersex, doctors haven’t given them the information that they have. [The case] created a heightened level of [consciousness] and chastised the doctors for past practice. One of the arguments we used was the U.N. Convention on the rights of the child. It has been signed by every country except for the United States and Somalia. The U.S. resists the Convention because it gives [children] rights that the U.S.

From Audience: What is done in terms of problematizing surgery? I want to hear about strategy on a more macro level. The work around intersex surgery has to be done because of the violence that’s happening right now. But another level is the overwhelming medicalization of bodies defined as different. I’m thinking of intersections with disability. In the disability rights movement, it’s been very difficult to make movement on an institutional level in regards to the wholesale medicalization of disabled bodies. That’s one of the places where a lot of movement needs to happen. How about public stripping for instance? It still happens everyday. What are the strategies to end medicalization of bodies. I think that’s part of a revolutionary agenda. I don’t think that tinkering one particular problem in Western medicine is enough. I think we need a far reaching agenda to change the medical establishment and end wholesale medicalization of bodies deemed different. I want to hear ideas.

Cheryl Chase: It’s a really hard problem. And you are right, a lot of issues that we deal within the medicalization of intersex, they are not specific to intersex. They cut across medicine especially with regard to children and people with bodily differences. The tape that we showed at the beginning, the doctor said this is a psychosocial emergency, but the people that come to deal with that emergency are doctors with knives and doctors with hormones. There’s no psychologist, no sociologist. And what we’ve been trying to do is get those doctors, pediatric endocrinologists, to at least acknowledge that we have to have mental health professionals on a par in their team [so that] people can have a little more common sense approach to bodily difference. [Parents} have to have peer support. We know that for intersex and lots of other bodily differences, the way to normalize them is to let them know they are not the only ones in the world. There are other people who have experiences like you have. There are other people that are living life like the life take your child is probably going to live. We can introduce you to those people. Doctors have resisted that.

Emi Koyama: [comments unavailable]

Diana Courvant: [unreadable] ….We spend a lot of time talking about, “Whoa, here is intersex, and it is medicalized.” We need to de-pathologize that one. And there’s not the growing unified movement to say, “We don’t know because doctors don’t study what is normal, what is ordinary, what are the variations.” When somebody comes in and has pain and also is intersex, the doctors can go, “There’s a problem here, I think I’ll cut the genitals.” As a transsexual woman. I went to a doctor. My doctor wanted to know if I had a sex reassignment surgery. [unreadable] ….Why do you ask this question? I’m curious. [laughter] But getting there was a real struggle, and it took him a long time to realize I was curious. He threatened me. You have to tell me, I could read your chart anyway. There’s no reason not to tell me. You come in, and you’ve got one presenting problem whether it’s an infection which requires intervention, and then they are free to look for differences in you and assign pathology to that difference. That’s a dynamic that exists and part of diagnostic process of doctors, and we teach them this. How diagnosis is done and what’s considered pathology haven’t been addressed, and we need to de-pathologize before we get to the place you are looking for.

Emi Koyama: [comments unavailable]

From Audience: I’m extremely nervous. I wanted to make a connection. When I first heard you read the piece at the plenary. I related to it. I’m a survivor of medical experimentation that was not related to my gender assignment. And thinking about intersex issues and the medical sexual abuse of children that are perceived to be intersexed has a connection in the United States. Like there’s a long history of the medical establishment, including the so-called mental health system and government and state, assuming ownership of certain bodies. And my own experiences, I related to it very intensely and things that come to mind are the Tuskegee experiments and to individuals and to whole communities in the United States. And for me my focus as an activist is speaking out about those issues. And I really thank you for talking about this, and I just wanted to make that connection to the arrogance of the state and the medical establishment feeling some kind of ownership and the right to have these social experiments on people’s bodies, people’s psyches. I’m speaking at [unreadable] and my talk is about building bridges and activists as survivors, and I want to make that connection and say thanks a lot for talking about this.

Cheryl Chase: Whenever we have [named] the kinds of interventions that doctors do with intersex kids experimental, even doctors on our side resisted that label. “Even though we don’t know what effect it has on people, we are not collecting data to see what it actually does to them,” they say, and therefore argue that it is not experimental.

Diana Courvant: I think actually, I’m glad you spent a little more time on that connection. I think that connection is a connection that Emi alluded to teaching her class what happens to intersex kids and adults. It doesn’t happen in a vacuum. I think Emi was already talking a little bit about that.

DC: Also I just wanted to throw out is there that it’s not just the evil state; it’s like the evil us. The body is owned in someone’s name. The Tuskegee experiment was done to benefit me. And it’s not something that we can attribute responsibility to somebody else or the state. Community ownership is community ownership; it’s community responsibility. So we need to not push everything on the state and that probably isn’t what you really wanted to say.

From Audience: No.

Diana Courvant: I didn’t think that was what you were trying to say, but I wanted to make that point clear to the audience. We are possessing, we are owning bodies that we probably wouldn’t want to own. We are not working to reject that ownership, and we need to. We have to take the responsibility.

From Audience: I’m a parent of an intersex child who has unique chromosome arrangement in a variety of ways. I want to make a comment, even though she appears to have severe developmental problems. As a middle schooler and adolescent, she experiences the same desires and behaviors that we see in more typical kids of her age…. I adopted her two and a half years ago. She lived in the backwaters of Florida, and she was not mutilated in many different ways. So she’s been fortunate that her body is relatively intact. So in looking at kids who may have multiple disabilities at birth, it’s still very important to not…. They need to still be able to have the choice. No matter how severely disabled a child is at birth, you don’t know what is going to happen 20, 30, 40 years down the road. My question is, how much is happening in terms of prenatal testing to identify intersex kids. Lots of kids with disabilities are being eliminated before birth. I believe this is a different issue. It’s a disability rights issue, and it’s an issue of genocide. I’m presuming the same thing may be happening with intersex children as well.

Cheryl Chase: We don’t have statistics, but we hear on an ongoing basis [about parents] who are making decisions about abortion when they have a prenatal diagnosis. Not all are done prenatally, but sometimes they are. The most common cause of intersex is an adrenal condition. They have started a program of prenatal treatment. These are only for parents to both be known to be carriers, usually because they have given birth to a child who has a large clitoris. The mother will give a powerful steroidal hormone for the entire pregnancy This is a drug with severe side effects to give to someone to avoid having a large clitoris. They have to administer it before they can determine know whether or not the child actually has the condition. The child then is exposed to this experimental steroid that is known in monkeys to result in altering the size of the hippocampus (a part of the brain). They’ve done this to 500 kids so far, and even people in that field have repeatedly called this therapy unethical, but it’s going on. The formulas are published and random doctors, neighborhood doctors, are doing this now, and it’s really barbaric.

Diana Courvant: I just wanted to bring up the word genocide before we move on. I really believe that the U.N. did a good job of defining genocide. Genocide is not merely the killing of mass people. Genocide is elimination of a people. We have used this word genocide as if it only happens in other cultures. You know, there is an active genocide of intersex people here. The erasure of bodies. We have another genocide in terms of what’s happening to Native American peoples. And by consistently stripping them of how to survive on their own, and they come up with casinos and they receive monetary sufficiency. Oh, those are unethical, ban them. This is part of a long history of removing any possibility of self-sustaining productivity on the part of the community. When you bring that up, it’s important to realize genocide is not hypothetical. It is happening in the United States in more than one way right this moment.

From Audience: I did use the term very intentionally.

From Audience: I just wanted to make a comment on how to address the medicalization of the body in general. I’m going to be going into healthcare, and I know one thing that can be done if you can [unreadable] your way into [medical school] in-services [inaudible], and you can go in there and say your piece. I would love to see an in-service like this panel talking to group of interns before they are indoctrinated into the doctor culture.

Cheryl Chase: We have had success and usually at the invitation of queer medical students. Stanford queer medical students invited us, and we have given two presentations there. Never heard from the clinicians. Just recently I happened to talk to somebody who has just completed their fellowship at Stanford, and she told me that those doctors slipped into our presentation. And got religion and went back and changed their practice. But they don’t really want to talk to anybody about it.

From Audience: I wanted to know the internet address.

Cheryl Chase: The internet address is www.isna.org.

From Audience: …Thinking that we have this kind of convergence of disability and intersex discussion going on here. Dealing with people accessing health care in their daily lives, when people with bodies that are pathologized, that people get inadequate care or disrespectful care can either self-advocate or [unreadable]. Organizing around the trans people. There’s more organizing. With intersex we’re too busy trying to change what they do for kids. So we are now at the point that we need to talk about the health care for adults. And I think there’s a lot more work going on among trans people. Like I know there’s some in Seattle and some in other places, some people trying to start in Portland. So that’s happening. Last time there was some similar organizing in Portland, and they included [intersex] in their list of things they were concerned about, but they didn’t actually, and I found out that way. But if they are not included just in the long list of identities, but really considering the issues that intersex people face in medical care, that could be really good practice, working together to create something like that. Intersex people themselves alone cannot do it, because they are only one of 3,000 or so.

Diana Courvant: …It’s really important to recognize who has power. Certainly it’s not that trans people are privileged in this society, but for a number of reasons there are many more out trans people than intersex people. We need to figure out where do resources exist, whether that’s in cancer survivor groups or whatever, and people who are already working on this, and people that have some form of privilege, whether it’s monetary or education or whatever, need to offer this to people, because there are people who don’t have the ability to do this. So it’s optimistic, and I know that you know it’s optimistic. What we need to do is when we go back to our communities, think about what kinds of privileges do I have, do I have any spare time, is it possible for me to create some space and reach out to people more marginalized. I’m not trying to tell you what your issues are, but [unreadable]. That’s a really good strategy.

Cheryl Chase: I think we also need to realize that doctors don’t go into medicine because they want to hurt people or treat them disrespectfully. And I have to admit, I’m completely shocked at how ignorant a lot of them are. When I finally get into a meeting, I realize, they’re not doing this on purpose. Boy, are these people dumb. [We’re] trying to figure out how to get into medical schools and change their thinking before they’re really rigid and to figure out how to connect with that part of them that went into medicine because they wanted to help people and let them understand how some of their practices have really hurt us. You know, we have strong allies who have actually had to face the fact that they were doing this to people. “How many kids did I hurt in a way that they’ll never recover from?” That’s a lot of fortitude for a medical professional to realize they did that. And when they’re confronted with so much evidence that it’s been harmful, it’s been easier for some of them just to disbelieve it, because they don’t want to face any part of it.

From Audience: Along those lines, I think I’m going to agree with you. I think that it is expanding with the vision. For example, I have a friend who is a woman of size, who when she goes in for an exam, they hand her what she considers a napkin, she has to educate them in terms of, “I’m a large woman, and you hand me something like this that’s supposed to cover me.” and it isn’t meant to embarrass her. It’s just meant as one size fits all in the world. She told me, “What do I do?” I said, “Well, we all have to advocate in some way, and other people are just sometimes busy, they don’t think. You have to realize, gee, nobody meant it as an insult. They just are dumb.” And that was available and that was what the manufacturers made. So it’s really looking at it in a whole different way and coming together as we are here with this dialogue. And I just want to thank you, because I learned a tremendous amount, and I thank everybody for their contributions.

From Audience: Thank you. I wanted to say thank you so much for this. I really appreciate it. I wanted to underscore what’s been said about the medical counterparts in [disability] community. Specifically for me as a MTF transsexual woman, I know that, like, there’s many ways that my experience is very different from intersex people, but one thing that is similar is the surgery techniques that were first used on intersex people that are now being used on trans people. And even though the context is completely different, it’s mostly trans adults that are choosing to access the surgery and only when they have the money. But basically my point is that the public stripping and medical display really happens. It happened to me and to other trans people I know. And like the surgery and other techniques are not even experimental. They’re pre-experimental — or not even “pre,” because [they] don’t necessarily ever get the data that would show how it affects us long term. And, yeah, I just wanted to say that’s one really good reason why trans folks can and should be allied with intersex people to fight the whole culture of public stripping and medical display and the sexualization of people with different bodies who, like, try to access medical care. Thank you.

From Audience: I just wanted to ask a crass economic question, because I think we overlooked the medical industry’s purpose is to make a profit out of normalizing bodies. So I wonder if there’s any research out there about what kind of money these physicians are making out of this practice, and I think that’s one of the ways to expose them.

Cheryl Chase: They make a lot of money out of it.

Emi Koyama: [comments unavailable]

Cheryl Chase and others: [unreadable]

Diana Courvant: [thanking people] [applause]

Sumi Colligan: For people interested in this conversation, they should come up and talk to the panelists. {announcements] Thank you.