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Intersexuality: What Families Should Discuss with Their Children.

Barbara Neilson a social worker at the Hospital for Sick Children in Toronto. She works with children with congenital abnormalities, and their families.

20:33

Other segments from the episode on December 11, 1997

Fresh Air with Terry Gross, December 11, 1997: Interview with Cheryl Chase; Interview with Antoine Khoury; Interview with Barbara Neilson; Review of John Coltrane's album "Coltrane: The Complete 1961…

Transcript

Show: FRESH AIR
Date: DECEMBER 11, 1997
Time: 12:00
Tran: 121104NP.217
Type: FEATURE
Head: Cheryl Chase
Sect: News; Domestic
Time: 12:06

TERRY GROSS, HOST: This is FRESH AIR. I'm Terry Gross.

When a baby is born, everyone wants to know: is it a girl or a boy? But sometimes, it's hard to answer that. According to the New York Times, at least one baby out of every 2,000 is born with ambiguous sexual traits. For example, genitals that may be either a small penis or a large clitoris; or gonads that are part testes, part ovaries.

This condition has become known as intersexuality. For about 40 years, many of these cases have been handled by doctors who decided on a gender assignment for the baby and followed that up with corrective surgery. Enough time has elapsed for us to see some of the results and think about their implications for our understanding of gender and gender surgery.

Be advised that we're going to discuss intersexuality in explicit anatomical and medical language.

Our first guest, Cheryl Chase, is a member of the first generation of intersex babies to be treated with sexual assignment surgery. Her medical history was kept secret from her. She was 22 when she discovered the truth. She kept it a secret from everyone else, until she turned 35 and became an intersex activist.

Chase is the founding executive director of the Intersex Society of North America. It functions both as a support group for intersex people and an advocacy group that opposes gender surgery on infants and children unless it is medically essential.

When Chase was born, doctors told her parents to raise her as a male, and issued a male birth certificate. At 18 months, different doctors decided to reassign her to female, and followed that up with gender surgery. I asked Chase if the first doctors gave her parents any advice in the days following her birth.

CHERYL CHASE, FOUNDING EXECUTIVE DIRECTOR, INTERSEX SOCIETY OF NORTH AMERICA: Well, I think that those first doctors were actually quite traumatized themselves. When I was born, my mother told me that the doctors fell silent, and they wouldn't show me to her. And she became upset, and they still wouldn't tell her what was going on. And when she became more upset, they sedated her, and every time she came out of sedation for three days, they sedated her again while they were trying to decide what to do with me.

And after three days, they decided to label me male, but I know that they didn't have any particular data to base that decision on.

GROSS: And what advice did the doctors give your parents about how to raise you?

CHASE: They told my parents that I was a boy with a congenital defect, and that there wasn't anything that they could really do to help except maybe surgery to bring my testes down, which couldn't come until later when I was five or so. And they sent my parents home, and after that they refused to speak to them again. They wouldn't return phone calls.

GROSS: Now I believe your parents went to other doctors when you were about one-and-a-half years old -- and what did they say?

CHASE: Well, my parents visited some doctors who purported to be specialists in taking care of intersex children, and those doctors actually were a little bit more careful in a medical sense, and they did discern what my medical condition was, and they discovered that I had ovo-testes -- each of my gonads was partly ovarian and partly testicular -- and that it was possible for me to become pregnant as a female. They labeled me a female, and immediately removed my clitoris.

GROSS: Why did they remove your clitoris?

CHASE: Because it was large, and they -- even today, doctors believe that a large clitoris is extremely embarrassing; it's actually monstrous. It will prevent the parents from loving the child. It will prevent the child from having any sense of their own body as female or as their own. And that the child may grow up homosexual.

GROSS: What advice did the doctors give your parents about how to raise you after -- as a girl, after they'd come to think of you as a boy?

CHASE: They told my parents -- I was a year-and-a-half old -- and they told my parents that I was, in fact, a girl and that having had this surgery, that I would be able to grow up normal, sexually normal. I would get married. I would have children. I'd be heterosexual. And that they should change my name from a boy's name to a girl's name which sounded similar so that I wouldn't notice; and that they should get rid of all the blue clothes and baby things, and to buy pink ones; that they should comb their house for all evidence that their son had existed and destroy it; and that they should move to another town and not tell anyone where they went.

GROSS: Did they do all of that?

CHASE: Yeah, they did that.

GROSS: Where did you move from and where did you move to?

CHASE: They moved -- not immediately, but a couple of years later -- just from one town in New Jersey to another town. But the, you know, the thing is that they certainly didn't cut off all of their ties with their friends and family. So later when I discovered what had happened -- that my sex had been changed and that I had been a boy for a year and a half -- I learned that when I was 22 -- I was totally mortified to realize that everyone in my extended family and all my parents' friends must know that and think of it every time that they looked at me.

GROSS: How did your parents explain it to their friends and family?

CHASE: I have talked to my mother -- my father died before I had a chance to talk to him about it -- and to some other relatives. And I think that my parents were so traumatized that they couldn't talk about it. They just pretended it didn't happen. And if someone went -- questioned them about it, they got a look that told them this was dangerous territory and it wasn't OK to ask.

GROSS: Now, were you something of a medical mystery or medical curiosity to doctors over the years? Were you constantly getting examined, for instance, by the doctors who performed the surgery?

CHASE: Well, the doctors who performed the surgery asked for my parents to bring me back annually, and said that they wanted to do some more surgery some years down the line. My parents didn't go back, and I suspect that's because the whole experience was so traumatizing that they just didn't want to deal with it again.

But when I was eight, they did go back. I think that the family physician knew that these doctors wanted to do some more surgery and he sent us back there. They kept me in the hospital for some time. They did a lot of examinations, including X-rays and lots of blood work. And finally, they did some abdominal surgery, which I know now was surgery in which they removed the testicular part of my gonads. But they didn't explain that to me at the time or anytime after.

GROSS: What did they tell you they were doing?

CHASE: They told me that because I had had some stomach aches, they were going to look inside my abdomen and see if everything was OK.

GROSS: My guest is Cheryl Chase. She's the executive director of the Intersex Society of North America. "Intersex" refers to a person who's born with some aspects of male and some female sexual characteristics. When she was born, she was labeled male, but 18 months later new doctors came and labeled her female.

So she was brought up male the first few -- the first year and a half of her life, and then female ever since. And she's now a gender activist.

Once you had access to your medical records and you started to understand the story in all its dimensions, did you still think of yourself as female?

CHASE: I didn't really think of myself as female before I had the medical records. I didn't think of myself as male, but I also was quite well aware that I didn't feel female and I didn't feel quite like other women.

GROSS: In what ways did you feel different from other women? Or from how you imagined other women felt?

CHASE: That's kind of hard to put into words. I -- it was also really made complicated by the fact that I was very emotionally withdrawn and really a social misfit. I wasn't able to talk with other people.

GROSS: Right, so you just felt different altogether.

CHASE: Yeah.

GROSS: And didn't associate it necessarily with your gender.

CHASE: Yeah. When I read in my medical records, though, that I had had a sex change and that I was labeled a hermaphrodite, it said "true" hermaphrodite; it said "pseudo" hermaphrodite; it said "male" hermaphrodite, "female" hermaphrodite; it said "clitorectomy;" it said "phallus" -- all these things were really shocking to me, and I was profoundly shamed. I was mortified and I didn't feel like I could talk about that with anyone.

GROSS: I'm wondering if you identify now as male or female, or see yourself in a way as "none of the above"?

CHASE: Well, I think now of sex and gender as being sort of bipolar with these well-defined concepts of male and female. But people approach those to a greater or lesser extent. And I am sort of somewhere in the sphere of female, but not as firmly female as most women. And I'm very much aware all the time that I am not female in the way that people think of a woman as being.

GROSS: As an activist, what's the message you're trying to give to doctors know about how they should deal with babies who are born intersex?

CHASE: Intersexuality or sexual difference in general is not a medical issue, although there may be some medical issues associated with intersex. But the difference in itself is one that should not be considered shameful. And the child has to be given as much autonomy as possible in deciding what's going to be done with their body.

I think that intersex children should be labeled a sex, but that that sex should not be surgically enforced on infants. And that the parents and the child as they grow a little bit older need access to peer support and to qualified mental health counseling. So sort of to sum it up is we want counseling, rather than cutting.

GROSS: It would be your hope that doctors wouldn't surgically intervene to define gender, and that when a child reached a mature age, that if they wanted surgery, they'd have it on an elective basis. Is that accurate?

CHASE: That's right.

GROSS: I'm wondering if you think that a child would cope well with ambiguous sexual organs? I mean that, too, is a lot to ask of a child.

CHASE: Well, we actually have people in the Intersex Society who haven't had surgery, either because they grew up -- they're a little bit older; they grew up before surgery became commonplace, or because somehow they fell through the cracks. And you know, by comparing their experience with ours, by talking with each other, we find that we envy the ones who had no surgery and they are horrified to find out what happened to the rest of us.

GROSS: What do you envy about them?

CHASE: I envy their intact genitals and their sexual function. You know, people -- in our culture, we talk about sex a lot, but we are really only permitted to talk about how good it is. And that's an experience that I feel very much left out of. Sex is very difficult for me. I don't have easy arousal, and I have no sense of relief. There's no orgasm. There's no relief. And a lot of times, it's difficult for me to engage in it at all.

GROSS: Now, you're an activist. You founded the Intersex Society of North America. How did you end up going from feeling really withdrawn and feeling like this was a secret that you couldn't possibly discuss with anyone, to feeling like it was -- that you wanted to use your story as a kind of case study in what could go wrong, and how not to handle an intersex birth?

CHASE: Ultimately, the pain of keeping that secret and that shame inside became so great that I couldn't live with it anymore. And I realized that the thing that was really hurting me was not the fact of my intersexual birth.

It was the fact that it was made secret and shameful. And that in order to prevent that kind of hurt from being inflicted on intersex infants being born every day, what I wanted to do was to make intersex less shameful. And the way to do that is to, rather than hide, is to come out about it.

GROSS: Cheryl Chase, thank you very much for talking with us.

CHASE: Thanks, Terry.

GROSS: Cheryl Chase is the founding executive director of the Intersex Society of North America.

Coming up, we'll hear from a urologist who has performed gender-related surgery on many intersex babies.

This is FRESH AIR.

Dateline: Terry Gross, Philadelphia
Guest: Cheryl Chase
High: Cheryl Chase, executive director of the Intersex Society of North America. The society was set up to serve and provide peer support and medical information for hermaphroditic people who, at birth, exhibited some sexual organs of both genders. Chase was classified male at birth, but was "reassigned" female at 18 months.
Spec: Health and Medicine; Culture; Intersexuals
Please note, this is not the final feed of record
Copy: Content and programming copyright 1997 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1997 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Cheryl Chase
Show: FRESH AIR
Date: DECEMBER 11, 1997
Time: 12:00
Tran: 121102NP.217
Type: FEATURE
Head: Antoine Khoury
Sect: News; International
Time: 12:18

TERRY GROSS, HOST: Cheryl Chase, the executive director of the Intersex Society of North America, opposes surgical intervention in the cases of intersex babies unless the surgery is necessary to preserve the physical health of the child.

We called a doctor who performs corrective gender surgery on infants and children, Dr. Antoine Khoury. He's the chief of urology at the Hospital for Sick Children in Toronto. His department sees 30 to 40 cases a year of babies born with ambiguous genitalia.

Be advised we're discussing intersexuality in explicit anatomical and medical language. Dr. Khoury says the critics of surgical intervention are basing their criticisms on outdated surgical techniques that were used 20 or 30 years ago.

DR. ANTOINE KHOURY, HEAD, DIVISION OF UROLOGY, HOSPITAL FOR SICK CHILDREN: The surgery has changed completely. We're doing things quite differently. Now we have much better ways of creating the -- a new vagina; the nerves to the clitoris are being bisected very carefully; the clitoris is reduced in size and re-set in the right spot, instead of being removed, which was the -- the standard surgical approach previously.

But because things were done in a different way 25 years ago, does it justify not choosing the advance we have today to give the children a better procedure; a much more prismatic and functional outcome that they can grow with.

GROSS: We just heard the argument made on the show that when surgical intervention isn't essential for the medical health of the person, that it might be best if surgery was postponed until such a time as that person could be in on the decision; that person would be old enough and mature enough to decide whether they wanted it for cosmetic reasons or not.

I'm wondering if you think that that's ever a good idea, to wait that long?

KHOURY: I think it depends. In children with very mild abnormalities, that they're not very prominent, it may be an issue, though it's hard -- it's hard to see that even arise. But the point that one has to remember is: one has to grow with sex organs that are normal for the gender. It would be quite confusing for a little girl to grow with what seems to be a penis as her genital organ.

It may be very shocking. I mean, imagine her parents taking her to swim class for instance. What room would she -- what change room would they change her in? And similarly at school, that she goes to the washroom and goes through all this. It becomes very confusing for the patient and quite disturbing.

So ideally, one would like her to grow with genital organs that are normal for her gender or her sex.

GROSS: I know that there have been a lot of cases where people who had genital surgery as infants were never told about it. It was kept a secret from them until they discovered it and demanded their medical records. Do you think it's a good idea to keep the surgery a secret? And, what is your common procedure there?

KHOURY: You know, Terry, I think there is two -- I mean, not every case is clear-cut and there's not black and white or correct or wrong answer in this, too. In the sense that, if you have a baby girl that you operate on, you have a very good outcome that looks excellent cosmetically and functionally early on; they come for two or three visits; they're fine; they're discharged. My advice to the parents in that situation is downplay it. You don't need to always remind the child that there was something really wrong with her. She looks normal. She will function normally. You can downplay it so that the psychological impact of that is not very pronounced.

On the other hand, if you have a child that has to keep on coming back for follow up for eight or nine or 10 years, such that the child is now 12, 13 years old and is still coming to see the doctor; has to lie down on that exam table and somebody has to look at her genitals very closely and examine her and inspect -- and then you try and get out of the exam room and tell her "oh, there's nothing wrong with you, not to worry," then you're fooling her and yourself. She'll always be saying "hey, there's something going on here."

So in that case, you really need to be very upfront with that child and explain to her exactly what's going on and what the process has been.

GROSS: I'm wondering if the work that you've done has affected your view of gender, and whether gender is something that's fixed or something that's more -- what's the word I'm looking for? -- gradated? -- you know, that the people have elements of male and female within them?

KHOURY: Yeah. You know, when we see -- there are cases when we look at them, you say, you know, this is gray; this is very gray; this is neither black nor white. We're right in the middle and we look at them, and we scratch our heads. And they're very tough decisions to make.

But the majority of patients -- I would say 90 percent of the cases, once you go through the proper evaluation -- it's black or white. And there's about a 10 percent sort of group of patients that you sit there and it's tough. It really is hard to make a call on them, and you think about them very hard. And these are the ones that you spend a lot of time with the parents because it's a life-long -- most of the time, it's a life-long decision that is very hard to -- you know, you don't want to make the wrong call for the child's sake.

GROSS: Do you want to hear more about what intersex activists are saying? Or, do you feel that it's irrelevant because they had their surgery before it was done as well as it is today?

KHOURY: Yeah. You know, I understand where they're coming from. There's no question about it. There's no two ways around it. If they've had bad surgery, they're -- then it's -- there's clearly a very unfortunate outcome that -- all I'm saying is, you know, before we -- before we sort of jump on the bandwagon of saying abandon what you're doing now, I think we have to understand very clearly what is happening now and how improved the approach is.

And why has the change taken place? It's taken place because the intersex people have advocated for that. And they are the ones that spoke out against what happened in the past. I mean, their speaking out has led to the change that is now good for the children that are unfortunately born with this very significant problem today.

GROSS: Dr. Khoury, thank you very much.

KHOURY: Thank you, and good luck.

GROSS: Dr. Antoine Khoury is chief of urology at the Hospital for Sick Children in Toronto. More on intersexuality in the second half of the show.

I'm Terry Gross and this is FRESH AIR.

Dateline: Terry Gross, Philadelphia
Guest: Dr. Antoine Khoury
High: Dr. Antoine Khoury, head of the division of urology at the Hospital for Sick Children in Toronto. He works with many parents of children born with ambiguous gender.
Spec: Health and Medicine; Youth; Intersexuals; Canada
Please note, this is not the final feed of record
Copy: Content and programming copyright 1997 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1997 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Antoine Khoury
Show: FRESH AIR
Date: DECEMBER 11, 1997
Time: 12:00
Tran: 121103NP.217
Type: FEATURE
Head: Barbara Neilson
Sect: News; International
Time: 12:35

TERRY GROSS, HOST: This is FRESH AIR. I'm Terry Gross.

We've been discussing intersexuality -- the condition when a baby is born with genitalia or gonads of ambiguous gender. It affects about one in 2,000 babies. We've heard from the head of the Intersex Society of North America and from a doctor who performs corrective gender surgery on intersex babies and children.

Barbara Neilson deals with the psychological and emotional condition of intersex children and their parents. She's a social worker. She has worked as part of the team of doctors treating intersex babies and children at the Hospital for Sick Children in Toronto, where Dr. Khoury who we heard from earlier also works.

Be advised, we're discussing intersexuality with explicit anatomical and clinical language.

I asked Barbara Neilson what she does when she's first called in on a case where a child has been born with ambiguous genitalia.

BARBARA NEILSON, SOCIAL WORKER, HOSPITAL FOR SICK CHILDREN, TORONTO:
When I first meet those families, that first day, I'll spend between five and eight hours with the family, helping them get through that initial shock, finding out what, you know, what's happening for them and how are they going to cope with the situation no matter what occurs. Because as you can imagine, they're -- they're -- most people haven't heard about intersex conditions until they're being told their child has it.

And one of the doctors that we've had at our hospital in the past used to say: "you don't see walk-a-thons for intersex." You know, it's not something that is talked about. And so people are in shock, plus they've just had a new baby. For the mother, you know, her hormones are going wild and it's just a very difficult time for people.

GROSS: If a child -- if an infant is having surgery to either cosmetically alter the genitals that they were born with or sexual reassignment surgery, do you recommend that the parents tell the child about what has happened?

NEILSON: Yeah. That -- I feel very strongly about that. A lot of my clinical thinking before I came to this job, or where my clinical thinking in this job comes from, is a past history in child welfare, child sexual abuse, and adoption. I have a lot of experience in adoption. And of course in that area, there's issues of secrets and I'm very aware from rich clinical literature in that area the effect and the negative effect that secrecy can have on individuals.

And so that's where a lot of my thinking -- 'cause there's not a lot written about this, either in how one does deal with it and actually I'm very aware that in the not-too-distant past, it was recommended that you do the surgery and that's it and no one talks about it again. But I think if you talk to adults, you'll find that as children all children know there's something secret and if they -- if they're not given an explanation that's right for them developmental level, they will make up an explanation that fits their reality.

So situations -- I have a case -- had a case -- that I remember. The school called the mother and said, you know, your daughter, your 9-year-old daughter tells us she has a severe heart condition. And the mother was shocked, and said well, no, she doesn't have a heart condition.

Well, the child didn't know why she came to the hospital twice a year. No one talked about it. She thought if no one talks about it, it must be something that's very serious, and what's serious, I guess, maybe if I'm going to die, and why would I die? Gee, a heart condition.

So she -- you know, she came up with her own reality to fit what seemed to be going on around her. And that's what kids do. And I think you also will find if you talk to adults, along with being very outraged and angry at truths being kept from them, about their bodies and their information, that they're actually relieved when they find out what the secret was.

GROSS: I'm interested in the range of responses you've seen in children who have had sexual reassignment surgery...

NEILSON: Mm-hmm.

GROSS: ... and how they've -- the range of how they've dealt with it once they found out.

NEILSON: Right. If I could just -- before I say that, say the way that I recommend that families tell, there's no one way to tell. There's no right time and I also -- I really explain that to families 'cause if they think there's going to be a good time to tell, it's never going to come and they're never going to get there. Also, if they think that if the child wants to know, the child will ask -- that's never going to happen either.

So, I strongly suggest that they start taking pictures. I suggest they take pictures of the child prior to the surgery, not that you have them out on the mantel, but that you have them there so that the child can look at them at a later date to try to understand what they were like before the surgery.

And to start, again, what they call in the adoption field, a "life book" -- a book that speaks to them. There's pictures; babies start to look at their baby pictures at about the age of 12 months, so you can start to tell the story of their birth and the exciting, happy things about it. And then the really concerning things that happen.

And then as the child grows and develops, you can add more information. And I also suggest that they add it at times -- they have to sort of stay ahead of the crowd, so they need to be very in tune with when they do sex-ed at school; when are they going to start hearing about girls having menstruation. And they need to know what's going to happen with their body about that before it gets discussed at school.

And so when you ask me, you know, different ranges of reactions, it's not like somebody has been sat down and told. The ones that have been sat down and told are usually the teenagers where the parents have tried very hard to keep the information from them; maybe asking that the medical chart be kept out of the clinic when the child's in, and making sure that no one talks about the child's condition.

And when those kids find out, and here in Canada, everyone has legal ability to access their records once they reach a certain age, which is usually 16. So even if you wanted to keep it a secret, if the child wants to see that chart, they can. And I certainly talk with families about wouldn't you rather do it in a planned way, even though it won't be easy and it'll be difficult and there may be a crisis -- that you can have the supports there for the crisis -- rather than a child finding out accidentally and being angry at her parents; angry at the doctors; angry at everyone.

And so, that's one of the reactions that I see -- are the kids who haven't found out until they find out accidentally or at a very late date, and those kids are quite upset.

GROSS: So those kids are angrier. Now what about -- have you met children who are 10 or more, teenagers maybe, who knew what happened to them -- and I wonder how they're coping?

NEILSON: The other -- the other group of kids that I am working with are a latency, from six- to 12-year-olds, and I'm working with that particular group at this point as their families work on ways to tell them.

And I have a couple of kids that I can think of who do know everything; they actually -- at an earlier age than one might think they would know -- know about the chromosomes as well. And I think have done well, and -- just because they are coming from families where the families view their condition as one part of their lives and something that they are able to talk about; something they're given support for. But it's one part of their life and they have all sorts of other parts that are really important -- that make up the person.

And those are the kids, I think, that do really well, and the ones who have responded and are quite able to talk about it openly with me when they come in, and feel OK.

GROSS: I'm wondering what the people who you've seen have led you to think about gender and the meaning of gender and identity? In other words, have -- do you think of gender as being male/female -- you're male or you're female, period? Or have you come to see gender as being more of a sliding scale, where people have some things that we consider male and some what we consider female? I guess I'm wondering, too, if the people who you see, the children's who've had this sexual reassignment surgery, seem to have traits that we consider male and female?

NEILSON: Yeah, there probably is a sliding scale. I think that the way society's set up right now, though, that there are still boys and there are girls. What makes a boy or a girl, I think, is maybe part of the sliding scale, and that there are a lot of behaviors; there are a lot of traits that are not necessarily either male or female.

So some of the kids that I see look what we would consider to be extremely masculine get mistaken for being boys, although they're being raised as girls. But when you talk with them and possibly when you've done psychological testing with them, they believe they are girls. And that's how they feel, and their identity is as a girl.

So I think it really -- it's not black and white. I think it is, as you say, probably a sliding scale is a good way to look at it.

GROSS: My guest is Barbara Neilson, a social worker who works with intersex children and their parents. We'll talk more after a break.

This is FRESH AIR.

Back with social worker Barbara Neilson. We're discussing her work related to intersexuality -- the condition of people born with sexually ambiguous genitalia. She works with intersex children and their parents.

I think so many people grow up just assuming that there's something terribly wrong with their genitals -- that their genitals look, you know, weirder than other people's or that something's too big or too small or too this or too that. But most people are self-conscious about something, and I think lots of people are self-conscious about their genitals, particularly when they're young and they haven't been educated sexually yet -- but they're just sexually insecure?

So I can imagine how difficult it must be for someone who is officially defined as having genitals that are wrong..

NEILSON: Or abnormal or not looking...

GROSS: ... or abnormal -- yeah, right, exactly, exactly. So maybe you could talk a little bit about the impact, you think, that that has on identity.

NEILSON: Yeah. I think it's amazing. And one of the things -- I know there's some people who -- who say, even for minor hypospadia (ph) surgery or some of the other surgeries that aren't life-threatening, that they say, you know, wait until the child decides if they want surgery on their genitals.

GROSS: Mm-hmm.

NEILSON: And until I got into this work, I didn't realize kids in day-care, aged three, are teased unmercif -- you know, really teased a lot because boys have to sit to pee when they have hypospadius. And I really wasn't aware that 3-year-olds would get into teasing because a boy sat to pee. And they're noticing differences in genitals at that time, and in day-care situations kids have access to other kids in the bathroom and that's quite common.

So it is a real impact, and I know -- I know that a lot of kids once they are surgically repaired, where everything works -- all the water works work -- and sometimes the kids are still very upset about the scars that they have or the fact that it doesn't look like the other genitals that they've seen. And sometimes that's hard for the doctors to understand, but it certainly is very much a part of how the kids feel about themselves, or the teenagers or individuals, that it is a big part of their identity.

GROSS: Tell me about some of the typical questions or typical dilemmas that children who you are counseling bring up to you -- children who are intersex?

NEILSON: You know, a lot of the issues they bring up are the same issues that kids who have any kind of a chronic condition or any kind of a -- and particularly the ones who've had surgical interventions: why me? Why did this happen? It's not fair. A lot of the kids -- a lot of their issues are the fact they don't like to have to come in and have blood work, which doesn't sound like a huge thing, but it does if it's sort of, you know, a couple times a year on an ongoing basis.

And also having doctors examine their genitals. You know, we're in a culture where we tell kids not to let people look at their genitals or to do things to their bodies that they don't feel comfortable with, and yet this is something that we do on a regular basis with patients who come into the urology program.

And when it comes to understanding around the chromosomes, if it's a child whose gender's been reassigned, they often want scientific information when they're older. They want to read all they can, and of course there's not a whole lot written.

Also concerns about: how am I going to have relationships? I want a relationship as an adult -- how do I explain this? You know, how am I going to explain that I have to dilate my vagina twice a day with a dilator?

Those are really practical questions and not -- I certainly think the idea of group support and self-help groups and support for the families and the parents as well through groups, and connecting with other kids, is really, really a big help because there's a real sense of isolation and that "I'm the only one." And I think that's something that can be very useful.

GROSS: Cheryl Chase, who we heard from earlier in the program and who founded an intersex group, said that she thinks that when it's medically possible that surgical intervention wait until the child is old enough to be in on the decision and to say "I want it" or "I don't want it."

And she means particularly in cases where there's going to be gender reassignment, or a child is born with an oversized clitoris, that doctors felt should be surgically removed -- to wait until the child's old enough to say "yes, I want the surgery," "no, I don't want the surgery."

From the experience that you've had counseling children who've had surgical intervention, and those who -- whose parents chose not to have the intervention, what do you think about waiting?

NEILSON: The -- from what I've read -- from what she and others have said as well, and my -- I've thought a lot about this and have discussed it with my team and with other professionals as well. And my thinking is if we were in a society that was accepting of differences, that would probably be OK. But as I said to you earlier, you know, in a society where kids get teased from the age of three because their genitals look different, or they -- they're really different -- and the teasing about genitals hurts more than some other teasing.

And I don't know how one could do it. I don't know how you would raise a child where people say -- and I've heard this in the hospital with kids where they haven't had the repair until a later date; and I've heard people say: "well, is this a boy or a girl? He looks like a boy, but you have here he's a girl." And if that happens continually, that's not a good -- good way to live either.

And you know, that's where I think that -- I understand where they're coming from -- of thinking -- and I know it's one of the biggest fears that parents have, back at the point when they're making the decision, they say: "what if my child blames me for this? What if this isn't what they want and they say 'why did you do this to me?'"

And what I usually say to the parents is, I can almost guarantee they may say that to you at some point because all kids rebel and say something hateful to their parents, and this is a pretty big thing that you can rebel and they may really mean it at the time. And the parents can only make their decisions based on the information -- the best information they had at the time, trying to take the child's best interests.

GROSS: I supposed it could work the other way, too, where the child would say: how could you let me grow up this way? Why don't you surgically intervene?

NEILSON: That's right. I have -- you know, we have cases where, usually for cultural reasons, families have chosen not to go along with the recommendations that the doctors have made about reassigning gender. One case I think of in particular where it was different -- very definitely a cultural situation. When the child reached five, the mother said to me: "I -- now I understand what you mean, and I think maybe we made a mistake."

And it -- what I said to her was no, you didn't make a mistake. You made the best decision for your child based on what you -- you understood. And this child is going to have a difficult time -- would have had a difficult time with a reassigned gender; is going to have a difficult time with non-reassigned gender. And so, what can we do to try to get you through the path that you've chosen?

You know, 'cause yeah, the child is being teased, and that's something that we had predicted. And so then, what I want to do for them is to provide him with enough support and enough psychological help to be able to accept himself for how he is, and again hopefully to be able to view this as one part of his life.

But he's in a situation where he won't be able to have intercourse as a male. You know, that just won't be there because there was not enough material to construct a penis.

GROSS: I'm wondering if you counsel the doctors as well as the parents and the children? I mean, you have a talk that you've given which is called "More Than Just A Plumbing Problem" or "Not Just A Plumbing Problem."

NEILSON: Right.

GROSS: I wonder if you think that some doctors see it as "just a plumbing problem," and that you need to talk with them?

NEILSON: Yes, very much so. And I think -- I think that's a very big problem, and I think in a lot of centers -- in some centers, it's slowing coming around that doctors and nurses are understanding that it is -- you can't just do the surgery and say "that's it." And that people, even mi -- what we consider minor surgeries that we see, are really big for that particular child and that particular family, and that there's a real need for support and an opportunity to talk about it and deal with their feelings.

And yes, I do a lot of talking and a lot of work even with our team to get people to see that it can be helpful to have some counseling. And I think, again, being aware of a lot of now-adults who had surgery many years ago, or you know, in the last 20, 30 years, who are not happy with the results -- I think they have a very legitimate complaint in the fact that neither they nor their families were given counseling or offered, or maybe they might have been told, yeah, you could go and get it, but there weren't people who understood and were able to work with it. And because it's a rare condition, there aren't a whole lot of people who are versed in some of the issues.

And I think that -- I understand why people have been very upset about that. That and the fact that there hasn't been research, and there still hasn't been a lot of ongoing research into the psycho-social outcomes for these kids and, you know, as they grow into adulthood.

And I think -- you know, I think that makes these people angry and I understand it and I know that when one looks for funding for research -- you started out the interview saying it's such a small group of people, and that's the answer that comes when people try to get funding for research as well.

And it may not affect a lot of people, but boy the people it affects, it sure is of interest to them and their families in terms of the research. And I think that there's finally an understanding about that, and I'm really hoping that that's going to be coming in the near future; that there'll be some long-term studies and ongoing research into the outcomes.

GROSS: Barbara Neilson, thank you very much for talking with us.

NEILSON: OK. Thank you.

GROSS: Barbara Neilson is a senior social worker at the Hospital For Sick Children in Toronto. Earlier, we heard from Cheryl Chase, executive director of the Intersex Society of North America; and urologist Dr. Antoine Khoury.

Coming up, Kevin Whitehead reviews a boxed-set reissue of John Coltrane's Village Vanguard recordings.

This is FRESH AIR.

Dateline: Terry Gross, Philadelphia
Guest: Barbara Neilson
High: Barbara Neilson, a social worker at the Hospital for Sick Children in Toronto. She works with children with congenital abnormalities, and their families.
Spec: Health and Medicine; Intersexuals; Canada; Culture; People
Please note, this is not the final feed of record
Copy: Content and programming copyright 1997 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1997 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Barbara Neilson
Show: FRESH AIR
Date: DECEMBER 11, 1997
Time: 12:00
Tran: 121104NP.217
Type: FEATURE
Head: Coltrane Boxed Set
Sect: Entertainment
Time: 12:55

TERRY GROSS, HOST: CD box sets have become popular holiday gift items, so we've asked our jazz critic Kevin Whitehead to choose a couple to review. He has a review of a new box set of John Coltrane's 1961 recordings at the New York jazz club, "The Village Vanguard."

It's a document from the year Coltrane's mature group sound came together.

(BEGIN AUDIO CLIP, JAZZ MUSICIAN JOHN COLTRANE PERFORMING "WHAT CHILD IS THIS?")

KEVIN WHITEHEAD, FRESH AIR COMMENTATOR: Almost as long as there have been compact discs, jazz fans have been promised a box of John Coltrane's complete Village Vanguard recordings, from four days in November, 1961. Most of the stuff had been scattered over five old LPs or CD issues, with a few items still left in the can.

Now, finally, Impulse brings us a four-CD set of music from those evenings, including three newly released takes. Hearing all this music at once really puts you back in the moment when Coltrane was shaking everybody up. In an issue of Downbeat that came out shortly after this recording, critic John Tynan denounced what Coltrane and sometime guest Eric Dalphey (ph) played as "anti-jazz." Here's Coltrane on tenor sax, and then Dalphey on alto.

(BEGIN AUDIO CLIP, JAZZ SAXOPHONISTS JOHN COLTRANE AND ERIC DALPHEY IN PERFORMANCE)

John Coltrane was obviously searching for something. One sign was the musicians he'd add to his quartet at the Vanguard and elsewhere in 1961. Earlier than other musicians in the '60s, Coltrane had discovered Indian music, not that he ever imitated it outright. On his composition "India," Achmed Abdul Maleek (ph) echoes the drone of an Indian tamboora (ph), using the guitar's Arabic cousin the "oud." On oboe is Garvin Bichelle (ph), who critics always point out, had also recorded with blues singer Mamie Smith in 1921.

(BEGIN AUDIO CLIP, JAZZ SAXOPHONIST JOHN COLTRANE, WITH ACHMED ABDUL MALEEK ON OUD, PERFORMING "INDIA")

There are two bass players there -- Reggie Workman (ph) and Jimmy Garrison (ph). Garrison soon became Coltrane's full-time bassist, for one thing because his tamboora-like drones fill in the backgrounds without dictating a direction, taking Coltrane along without getting in his way is the rhythm section's mission.

McCoy Tiner's (ph) piano chords are so open and have so many extra notes, most anything Coltrane plays over the top will fit. Tiner's strategy worked so well, literally hundreds of pianists have imitated him. No modern jazz musician has been more widely copied than McCoy Tiner, Coltrane included.

But drummer Elvin Jones shines the brightest. Much has been made of his independent-limbed polyrhythms, executed more loosely than is usually noted. But that looseness just adds to his amazingly relaxed swing, even when the music boils over and he's doing two others things at the same time.

(BEGIN AUDIO CLIP JAZZ SAXOPHONIST JOHN COLTRANE, ACCOMPANIED BY DRUMMER ELVIN JONES, IN PERFORMANCE)

This band was notorious for being loud and frenetic, but they had their lyrical side. The oddest piece from the Vanguard is a remake of Coltrane's classic "Nyema" (ph). If you know the original, the new tune will seem both familiar and disorienting, like the old melody turned upside down.

(BEGIN AUDIO CLIP, JAZZ SAXOPHONIST JOHN COLTRANE PERFORMING "NYEMA")

On John Coltrane's 1961 Village Vanguard stand, all his contradictions were on display. He can play tough or tender; could acknowledge English and Indian music and gospel and blues -- even as he seemed to reinvent music from scratch. And that helps explain why some people revered him as a religious figure, even as others thought him a devil. He could be all things to a lot of people.

GROSS: Kevin Whitehead reviewed "John Coltrane: The Complete 1961 Village Vanguard Recordings" on the Impulse label.

Dateline: Kevin Whitehead; Terry Gross, Philadelphia
Guest:
High: Jazz critic Kevin Whitehead reviews a new box set from legend John Coltrane.
Spec: Music Industry; Jazz; John Coltrane
Please note, this is not the final feed of record
Copy: Content and programming copyright 1997 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1997 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Coltrane Boxed Set
Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.

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