![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
May. 18th, 2014 09:28 pm
Intersex and intersections
![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
nightengaleskndI went to a talk this week on intersex conditions. Actually I went to a talk and a workshop. The talk was largely aimed at pediatric residents and addressed some of the recent research in the field. The talk presented a good overview, mostly of information which was not new to me but was likely new to most of the audience. The workshop was incredible.
I had managed to wrangle an invitation to the workshop, which attendees turned out to be a Who’s Who of relevant pediatric specialists and other hospital staff, toward the question of starting our own clinic. Most of the endocrine department was there, three physicians, two nurse practitioners and their social worker. Both pediatric urologists were there. The local pediatric gynecologist came. There were a couple of key general pediatricians, a neonatologist and one of the clinical geneticists. Most of the hospital ethics committee came as well, including both medical staff, a hospital chaplain and the director of diversity, who also runs the hospital accessibility committee. More on the workshop itself later.
I’m not terribly experienced in the field of treating children with intersex conditions, which is the term I grew up on and the term I tend to hear from individuals who have intersex conditions. I’m going to say “intersex” or “intersex condition” because that’s where I know the most self-advocacy is located. If I’m wrong, somebody please tell me.
In this, as in much of my cultural competency work, I’m not terribly experienced or educated but I tend to be more experienced and better read than most of the people around me. I know enough to explain some things to the completely uninformed, but not nearly as much as I’d like to know. On the rare occasions that I have relatively easy access to lectures or workshops on the subject, they tend to be 101ish for me. I’m reminded of the Yiddish proverb about the mother whose son tells her he is a captain. “By you, you’re a captain, and by me, you’re a captain, but by a captain, you’re no captain.” I'm no captain. I just often find myself the only one on the boat with an oar.
The workshop opened with some historical perspective by a senior endocrinologist. “Pseudohermaphroditism” was the term he had used when he published papers on the topic back in the day. Next came “intersex” and “ambiguous genitalia,” which is about where I came in, in the early 2000s. He referenced a consensus statement from the Intersex Society of North America, commenting that most pediatric endocrinologists have never read it. DSD, or Disorder of Sexual Development, is apparently the current accepted medical diagnostic term.
The person who ran the workshop I attended runs a DSD clinic. She states they had to give their clinic a name that doesn't have the words "sex" or "gender" anywhere in the name, so they go by an acronym which may have "sex" as one of the original words (there's an S in it) but she can't remember what it actually stands for. She also states that the acceptance of the term DSD by the parents of the kids they see varies depending on the specific condition and most parents prefer condition-specific referents. I didn't have a chance to ask her about preferred terminology of the children/teens/adult patients themselves. I strongly suspect DSD itself is only a transient term, if for no other reason than activists eventually convincing the medical system not to use the term "disorder." I have a hard time seeing DSD coming up through the ranks as a self-identification any time soon, just based on what I know about other self-identification movements.
I know many people with intersex conditions identify as male or female, and that some identify as intersex. I know that there are those who would like to append Intersex to the LGBTQI umbrella (like that) and those who would prefer to minimize any association. I’ve read some 101 material on the Intersex Society of North America website. And of course, there’s my prior medical training.
In medical school, we had about an hour devoted to the subject, relatively early in my first year. Along with the physician giving the lecture, parents of a child with an intersex condition came to speak. I think “ambiguous genitalia” was the phrase in use, which takes us to 2003. We watched a movie first. The video had a picture of baby cards, you know, the “it’s a boy” and “it’s a girl” sort, which then faded into the background behind a superimposed question mark. People giggled. I know these future doctors felt uncomfortable. I could only imagine how the parents felt. Odds were also reasonable there was a person with an intersex condition in the lecture hall. I didn’t know much about intersex conditions but I did know about how it feels to have your identity or diagnosis or that of someone you care about erased or ridiculed in lecture hall. We did get an e-mail a few days later from our class honor board reps reminding us not to laugh or giggle about conditions when there are patients or family members in the room.
I don’t remember much of the rest of the session. I do remember someone, either the video or the actual physician speaker, giving us advise if we ever encounter a baby with an intersex condition. The advise was to tell the parents, “we’ve seen this before.” The idea being that parents needed to hear that what they were experiencing was not a unique, scary thing. The argument made was that by being present in the lecture/watching the video, we actually HAD encountered intersex conditions before. I’ve thought a lot about that, over the years. It’s a stretch, and yet it’s the truth. Even an hour talk on a topic, if done well, can significantly increase physician comfort discussing that topic later with patients, and increased physician comfort can in turn increase patient or family comfort. It at least gets everybody into the boat. Acquiring additional medical knowledge, if needed, can come later.
The first child I encountered with an intersex condition was an older infant with multiple, life-threatening medical problems. We were addressing the current, major concerns. I wouldn’t have realized, if the team hadn’t told me, that this was the baby I had previously heard about from the NICU and other residents. The baby had been in our NICU, medically stabilized and then transferred to another hospital which had a DSD program. What I had heard was that the baby left our NICU as [female name] and came back [male name.] (No medical assignment procedures were performed, just gender reassignment.) I wasn’t there at the time to know how hard it all was on the mother and now there were other issues. The baby was too young to ask. What I remember is the discomfort of the staff around the whole situation.
The second child was a baby who had been born at another hospital and assigned male. There was no ambiguity about the assignment. The baby had gone home from the hospital with a male name, probably to a layette full of blue and footballs. A few days later, a blood test performed routinely at birth came back with an abnormal result. All babies are tested because newborns can get very sick very quickly if untreated due to disruption in steroid synthesis that affects sodium and potassium levels. The steroid synthesis can also lead to an intersex condition. The baby was brought back in for medical evaluation, this time to our children’s hospital. Further evaluation showed that the baby had ovaries and XX chromosomes. The baby and family were not my direct patients, as we were running two ward teams at the time, but we discussed all the patients together. Again, what I recall was the level of anxiety among the other medical folks, including those with many years experience, people who typically stayed calm amid medical crises.
First I thought of that lecture, already 7 years previously, saying “you’ve seen this before.” Then I thought of intersections. What do people who are not four days old, living with intersex conditions, think we should know? So I googled up the Intersex Society of North America website and printed off that consensus statement for health care providers and started handing copies around. I convinced the team that we could take our time a little, not on stabilization of potassium levels, which was an emergency, but on assigning a gender, which had once been considered a psychosocial emergency. We could bring in our hospital psychosocial support service. We could locate some experts in the field, the “phone-a-friend” approach which is always available for health care providers in a bind in almost any medical predicament short of cardiorespiratory arrest. The team slowed down. The team calmed down. I learned the family calmed down. The baby went home. The baby saw some experts. My attending learned that the baby was now a girl. That was the last I heard.
So I have an “n” of 2, as we say, two patients I encountered, somewhat peripherally. And I have my feelings, and my perception of other people’s feelings. And I have parallels and intersections. I’m not trying to say (in fact I’m trying VERY hard not to say) that having an intersex condition or being intersex is anything like anything other than having an intersex condition or being intersex. For example, I know that being intersex and being trans, or agender, are really different things.
REALLY different things.
When I start talking to other health care folks about intersex conditions, my perception of their discomfort feels very similar to my perception of their discomfort when discussing sexuality and gender in other ways. I got volunteered to educate my department on gender and sexuality as they relate to child development, and said words like “penis” and “vagina” and “genderqueer” aloud. I brought up some of the emerging research on gender identity and autism and discussed a specific patient who is autistic and gender-variant. I brought up my discomfort about asking children, “are you a boy or a girl” and using the answer to gage language skills.
I went to a workshop on gender variant behavior at a recent professional conference and found myself surrounded by captains who have two oars and perhaps a compass, to my single oar. The target audience were folks looking for the boat. I tried to ask a question which had plagued me since encountering my patient, about which pronouns to use when writing up a medical report about a child. The question was minimally understood and tangentially answered.
This workshop was much better pitched. It even covered the fact that most existing research covers cosmetic surgical results (rated by surgeons) and parent stress and coping, and even that research is pretty limited. Apparently parents tend to cope better following surgical gender assignment. I fail to have words to express my thoughts on operating on a child to treat mental distress in a parent. They have some reports of adults with intersex conditions who state they wish they had had surgery as a younger child. It did occur to me this is a subset of adults, those who went to a gender clinic for the purpose of obtaining surgery, and may not be reflective of the majority, but of course minority opinions matter too.
Actually, I do have words. They come from disability studies. Medical Model and Social Model. So I think about the intersections with the way the medical community discusses gender and gender identity. And then I start thinking about intersections with the ways other medical decisions are made for children too young to express an opinion, in the name of “normalization.” This brings us to disability narratives, tales of surgeries performed, therapies enforced. “Normal” appearance emphasized at the expense of functionality. Parent opinions privileged over those of individuals directly affected. Adult advocacy virtually ignored by medical professionals in favor of their own limited research. Hopefully this is changing. I did ask the presenter about any experience their clinic has with individuals who grew up and stated a gender identity different than what they had been previously assigned and she was able to outline a few cases.
The point of the workshop this week actually wasn’t to educate us on DSDs. It was to help us explore the feasibility of starting our own clinic. If we do, it would be the only one in this region of the country. I don’t think there is one in any state which adjoins this one. So a lot of the conversation turned to ways to start a clinic and ways to run a clinic. The room was full of people who do interdisciplinary clinics already, and do them well. I’d worked with one of the urologists in spina bifida clinic here, and the geneticist at MDA clinic, tone clinic and the cleft/craniofacial clinic.
I’ve made something of a study of clinics. I’m in a field that does interdisciplinary in a big way, and I had the sense early in my training to realize this and see as many clinics as possible. My last estimate, I’ve seen 6 NICU follow-up clinics, 4 spina bifida clinics (including one before and after restructuring), 2 cleft/craniofacial clinics, 1 MDA clinic (before and after restructuring) and a tone clinic. My experiences vary from a day shadowing to a year of weekly sessions. I’ve seen some excellent examples and some alarmingly poor examples, and the condition seems to matter less than the cast of characters, a coordinator, and a commitment to communication among the providers.
I don’t know if our system can get a clinic going, but I think it has a reasonable chance. In some ways I’m sorry I’m not going to be staying on here to help get things going myself. But we had 20 people in a room, from surgeons to social workers, listening to a psychologist who left us with a thought that I think transcends any specific condition, any specific treatment model. “Any small steps you are able to take will be better than what you are doing now.”
Isn’t that the goal of medicine overall? To learn from our own and others’ past mistakes, listen to each other, across disciplines, and to our patients and their families, current and retrospective, to do better than we are doing now? And if we have that, we can then add the specifics of any given condition to that framework.
After all, exploring all roads, all paths, future, past, and parallels to either side, isn’t that the very definition of an intersection?
I had managed to wrangle an invitation to the workshop, which attendees turned out to be a Who’s Who of relevant pediatric specialists and other hospital staff, toward the question of starting our own clinic. Most of the endocrine department was there, three physicians, two nurse practitioners and their social worker. Both pediatric urologists were there. The local pediatric gynecologist came. There were a couple of key general pediatricians, a neonatologist and one of the clinical geneticists. Most of the hospital ethics committee came as well, including both medical staff, a hospital chaplain and the director of diversity, who also runs the hospital accessibility committee. More on the workshop itself later.
I’m not terribly experienced in the field of treating children with intersex conditions, which is the term I grew up on and the term I tend to hear from individuals who have intersex conditions. I’m going to say “intersex” or “intersex condition” because that’s where I know the most self-advocacy is located. If I’m wrong, somebody please tell me.
In this, as in much of my cultural competency work, I’m not terribly experienced or educated but I tend to be more experienced and better read than most of the people around me. I know enough to explain some things to the completely uninformed, but not nearly as much as I’d like to know. On the rare occasions that I have relatively easy access to lectures or workshops on the subject, they tend to be 101ish for me. I’m reminded of the Yiddish proverb about the mother whose son tells her he is a captain. “By you, you’re a captain, and by me, you’re a captain, but by a captain, you’re no captain.” I'm no captain. I just often find myself the only one on the boat with an oar.
The workshop opened with some historical perspective by a senior endocrinologist. “Pseudohermaphroditism” was the term he had used when he published papers on the topic back in the day. Next came “intersex” and “ambiguous genitalia,” which is about where I came in, in the early 2000s. He referenced a consensus statement from the Intersex Society of North America, commenting that most pediatric endocrinologists have never read it. DSD, or Disorder of Sexual Development, is apparently the current accepted medical diagnostic term.
The person who ran the workshop I attended runs a DSD clinic. She states they had to give their clinic a name that doesn't have the words "sex" or "gender" anywhere in the name, so they go by an acronym which may have "sex" as one of the original words (there's an S in it) but she can't remember what it actually stands for. She also states that the acceptance of the term DSD by the parents of the kids they see varies depending on the specific condition and most parents prefer condition-specific referents. I didn't have a chance to ask her about preferred terminology of the children/teens/adult patients themselves. I strongly suspect DSD itself is only a transient term, if for no other reason than activists eventually convincing the medical system not to use the term "disorder." I have a hard time seeing DSD coming up through the ranks as a self-identification any time soon, just based on what I know about other self-identification movements.
I know many people with intersex conditions identify as male or female, and that some identify as intersex. I know that there are those who would like to append Intersex to the LGBTQI umbrella (like that) and those who would prefer to minimize any association. I’ve read some 101 material on the Intersex Society of North America website. And of course, there’s my prior medical training.
In medical school, we had about an hour devoted to the subject, relatively early in my first year. Along with the physician giving the lecture, parents of a child with an intersex condition came to speak. I think “ambiguous genitalia” was the phrase in use, which takes us to 2003. We watched a movie first. The video had a picture of baby cards, you know, the “it’s a boy” and “it’s a girl” sort, which then faded into the background behind a superimposed question mark. People giggled. I know these future doctors felt uncomfortable. I could only imagine how the parents felt. Odds were also reasonable there was a person with an intersex condition in the lecture hall. I didn’t know much about intersex conditions but I did know about how it feels to have your identity or diagnosis or that of someone you care about erased or ridiculed in lecture hall. We did get an e-mail a few days later from our class honor board reps reminding us not to laugh or giggle about conditions when there are patients or family members in the room.
I don’t remember much of the rest of the session. I do remember someone, either the video or the actual physician speaker, giving us advise if we ever encounter a baby with an intersex condition. The advise was to tell the parents, “we’ve seen this before.” The idea being that parents needed to hear that what they were experiencing was not a unique, scary thing. The argument made was that by being present in the lecture/watching the video, we actually HAD encountered intersex conditions before. I’ve thought a lot about that, over the years. It’s a stretch, and yet it’s the truth. Even an hour talk on a topic, if done well, can significantly increase physician comfort discussing that topic later with patients, and increased physician comfort can in turn increase patient or family comfort. It at least gets everybody into the boat. Acquiring additional medical knowledge, if needed, can come later.
The first child I encountered with an intersex condition was an older infant with multiple, life-threatening medical problems. We were addressing the current, major concerns. I wouldn’t have realized, if the team hadn’t told me, that this was the baby I had previously heard about from the NICU and other residents. The baby had been in our NICU, medically stabilized and then transferred to another hospital which had a DSD program. What I had heard was that the baby left our NICU as [female name] and came back [male name.] (No medical assignment procedures were performed, just gender reassignment.) I wasn’t there at the time to know how hard it all was on the mother and now there were other issues. The baby was too young to ask. What I remember is the discomfort of the staff around the whole situation.
The second child was a baby who had been born at another hospital and assigned male. There was no ambiguity about the assignment. The baby had gone home from the hospital with a male name, probably to a layette full of blue and footballs. A few days later, a blood test performed routinely at birth came back with an abnormal result. All babies are tested because newborns can get very sick very quickly if untreated due to disruption in steroid synthesis that affects sodium and potassium levels. The steroid synthesis can also lead to an intersex condition. The baby was brought back in for medical evaluation, this time to our children’s hospital. Further evaluation showed that the baby had ovaries and XX chromosomes. The baby and family were not my direct patients, as we were running two ward teams at the time, but we discussed all the patients together. Again, what I recall was the level of anxiety among the other medical folks, including those with many years experience, people who typically stayed calm amid medical crises.
First I thought of that lecture, already 7 years previously, saying “you’ve seen this before.” Then I thought of intersections. What do people who are not four days old, living with intersex conditions, think we should know? So I googled up the Intersex Society of North America website and printed off that consensus statement for health care providers and started handing copies around. I convinced the team that we could take our time a little, not on stabilization of potassium levels, which was an emergency, but on assigning a gender, which had once been considered a psychosocial emergency. We could bring in our hospital psychosocial support service. We could locate some experts in the field, the “phone-a-friend” approach which is always available for health care providers in a bind in almost any medical predicament short of cardiorespiratory arrest. The team slowed down. The team calmed down. I learned the family calmed down. The baby went home. The baby saw some experts. My attending learned that the baby was now a girl. That was the last I heard.
So I have an “n” of 2, as we say, two patients I encountered, somewhat peripherally. And I have my feelings, and my perception of other people’s feelings. And I have parallels and intersections. I’m not trying to say (in fact I’m trying VERY hard not to say) that having an intersex condition or being intersex is anything like anything other than having an intersex condition or being intersex. For example, I know that being intersex and being trans, or agender, are really different things.
REALLY different things.
When I start talking to other health care folks about intersex conditions, my perception of their discomfort feels very similar to my perception of their discomfort when discussing sexuality and gender in other ways. I got volunteered to educate my department on gender and sexuality as they relate to child development, and said words like “penis” and “vagina” and “genderqueer” aloud. I brought up some of the emerging research on gender identity and autism and discussed a specific patient who is autistic and gender-variant. I brought up my discomfort about asking children, “are you a boy or a girl” and using the answer to gage language skills.
I went to a workshop on gender variant behavior at a recent professional conference and found myself surrounded by captains who have two oars and perhaps a compass, to my single oar. The target audience were folks looking for the boat. I tried to ask a question which had plagued me since encountering my patient, about which pronouns to use when writing up a medical report about a child. The question was minimally understood and tangentially answered.
This workshop was much better pitched. It even covered the fact that most existing research covers cosmetic surgical results (rated by surgeons) and parent stress and coping, and even that research is pretty limited. Apparently parents tend to cope better following surgical gender assignment. I fail to have words to express my thoughts on operating on a child to treat mental distress in a parent. They have some reports of adults with intersex conditions who state they wish they had had surgery as a younger child. It did occur to me this is a subset of adults, those who went to a gender clinic for the purpose of obtaining surgery, and may not be reflective of the majority, but of course minority opinions matter too.
Actually, I do have words. They come from disability studies. Medical Model and Social Model. So I think about the intersections with the way the medical community discusses gender and gender identity. And then I start thinking about intersections with the ways other medical decisions are made for children too young to express an opinion, in the name of “normalization.” This brings us to disability narratives, tales of surgeries performed, therapies enforced. “Normal” appearance emphasized at the expense of functionality. Parent opinions privileged over those of individuals directly affected. Adult advocacy virtually ignored by medical professionals in favor of their own limited research. Hopefully this is changing. I did ask the presenter about any experience their clinic has with individuals who grew up and stated a gender identity different than what they had been previously assigned and she was able to outline a few cases.
The point of the workshop this week actually wasn’t to educate us on DSDs. It was to help us explore the feasibility of starting our own clinic. If we do, it would be the only one in this region of the country. I don’t think there is one in any state which adjoins this one. So a lot of the conversation turned to ways to start a clinic and ways to run a clinic. The room was full of people who do interdisciplinary clinics already, and do them well. I’d worked with one of the urologists in spina bifida clinic here, and the geneticist at MDA clinic, tone clinic and the cleft/craniofacial clinic.
I’ve made something of a study of clinics. I’m in a field that does interdisciplinary in a big way, and I had the sense early in my training to realize this and see as many clinics as possible. My last estimate, I’ve seen 6 NICU follow-up clinics, 4 spina bifida clinics (including one before and after restructuring), 2 cleft/craniofacial clinics, 1 MDA clinic (before and after restructuring) and a tone clinic. My experiences vary from a day shadowing to a year of weekly sessions. I’ve seen some excellent examples and some alarmingly poor examples, and the condition seems to matter less than the cast of characters, a coordinator, and a commitment to communication among the providers.
I don’t know if our system can get a clinic going, but I think it has a reasonable chance. In some ways I’m sorry I’m not going to be staying on here to help get things going myself. But we had 20 people in a room, from surgeons to social workers, listening to a psychologist who left us with a thought that I think transcends any specific condition, any specific treatment model. “Any small steps you are able to take will be better than what you are doing now.”
Isn’t that the goal of medicine overall? To learn from our own and others’ past mistakes, listen to each other, across disciplines, and to our patients and their families, current and retrospective, to do better than we are doing now? And if we have that, we can then add the specifics of any given condition to that framework.
After all, exploring all roads, all paths, future, past, and parallels to either side, isn’t that the very definition of an intersection?
no subject
no subject
Of course, I would also like to think that medical professionals in this day and age would be able to discuss things with patients and families in a sensitive way and not avoid difficult topics just because they are difficult. Of course, I would also like to buy a bridge, in Brooklyn. . .
no subject
http://www.alicedreger.com/home.html (look at her "Sex and gender" stuff)