In the Life: Interview with Betsy Driver [unedited footage]

my name is Betsy driver I'm a person who was born with intersex and I am also the executive director and co-founder of an intersex peer support organization called bodies like ours great can you explain for people the term intersex exactly what it is intersex very briefly and very simply it's just a variation of chromosome or genital differences that don't match what society in medicine called standard male and female there was pre worse than other times that they people could compare the access previously intersex was referred to as hermaphroditism to a certain extent it still is by some and over the course of time there's been different words that have been popular such as pseudo hermaphrodite is where female stood over afroditi ism or male suit of her pseudo hermaphroditism and then of course you get into all the different intersex conditions the different types of intersex conditions which of course then gets into a whole bunch of different words right now the current term the common term used medically and by much of society and especially by intersex advocates is intersex and intersex itself is a medical umbrella term there's not any simple single there's there's no single medical diagnosis of intersex intersex being the Amedda Columb relative actually covers several dozen different types of intersex conditions and intersex presumably presumably I've never really done that where I have that way yeah I've done word history on it it originally was used in the late 1800s to referred to bisexual people then it moved into referring to people who had gender identity issues and finally in about probably the 1960s and 1970s it began to be used for people born with what was commonly called before then hermaphroditism so in in sort of a politically correct times for people to understand they can sort of understand it through the usage of the word hermaphrodite but the word her my friend is really not politically appropriate to use correct well the problem with the word hermaphrodite is people think about hermaphrodite e's from Greek mythology and they think that it means people are born with two full sets of genitals and that can't happen that's biologically impossible there is absolutely no human being running around an earth that has a full set of female reproductive organs and female genitals as well as male reproductive organs and male genitals so in that sense it's incorrect you know human beings cannot reproduce with themselves snails can snails are actually hermaphrodites sponges are hermaphrodites so you know if you think about it SpongeBob SquarePants is a hermaphrodite as is Nemo make the clownfish are hermaphrodites they can reproduce with themselves or they can you know be there produce eggs or produce sperm you know fertilizer lay the eggs with human beings it comes out where our genitals and our reproductive structure basically comes from the same biological tissue you know a clitoris is nothing more than a small penis or vice versa you could say a penis is nothing more than a big giant clitoris the ovaries and the testicles come from the same tissue the labia and the scrotum come from the same tissue so in that sense it tends to be a variation the other issue with hermaphrodite is it's also it's quaint and it's Victorian and it just doesn't really represent very well you know there's so many different types of intersex conditions where you might have somebody who you know is absolutely female they have an uterus and ovaries but they have an enlarged clitoris so when they're born they may not look female or they may look ambiguous they don't know male or female or you may have somebody who's born with a type of intersex condition their chromosomes don't match what the genitals look like so can you tell us your story your personal story I was born in the mid 1960s and when I was born they couldn't tell if I was a boy or girl at first and took a couple of days in extensive medical testing the reason that happened is I was born with something called congenital adrenal hyperplasia which is a form of intersex depending upon its the most common form of intersex that leads to surgery it's not necessarily the most common form of intersex because but that also gets into how you define intersex you know the definition of intersex particularly medically is hotly contested and in dispute you know what conditions you know our an intersex condition which ones are not and of course you know both medically socially and within the intersex movement you know there's some political ramifications as to what actually defines an intersex condition in my own situation with the cah I was born with an enlarged clitoris it was it was quite enlarged actually it was about three centimeters long at birth they like I said they didn't know if I was a boy or a girl once they determined that I was a girl because I had a uterus and ovaries I was then scheduled for what they call feminizing surgery and at the age of three months I underwent a full clitter clear back to me in my medical records it says that the clitoris was amputated to the nub and when I was a young teenager just before puberty then they also constructed a vagina and when I was born even though I had a uterus and ovaries there was not really a visible vaginal opening you know I did have the upper part of the vagina and the cervix but there wasn't an opening the labia were fused and so that was done when I was just hitting puberty and then it had to be redone again when I was a little bit older in my teens a total of four surgeries there was urogenital surgery when I was an infant there was the clitoris to me and they were two vaginoplasty so anatomically what do you mean by function would you be able to reproduce if you so choose because you because I have a uterus and ovaries and I do have one of the rare types of intersex that does leave fertility it intact if I wanted to have kids I could that's not a problem and many women with CAH do have children as far as you know does it look normal no am i okay with it absolutely you know I'm comfortable in my own skin does it have full sensation like unaffected female no you know they cut my clitoris off of me it was amputated from me am I able to have an orgasm yes you know the biggest sex organ is up here between my ears you know it's all up here and in fact and I'm one of those very lucky women actually that I read about you know this 2% who can have an orgasm just thinking about it if you know I got the right visual things going on and I'm fine so but I've learned I've learned how to compensate you know which was just a matter of you know almost having to if I wanted Tina be in love and be able to make love with somebody now I mean do you feel our parents were sort of pressured into making decisions by doctors because it was so little information on this subject oh absolutely my mother didn't think she had a choice and for me no sadly my mother passed away about a year ago but we were able to sit down and talk about this before she died we had wonderful conversation it was the first time we ever really talked about it and she just didn't think she had a choice you know she was told that without it I would be a miserable unhappy person possibly be a lesbian possibly have gender identity issues and and it needed to be done and in fact one of the things when I first started to become active as an intersex activist she was very worried that I was thinking about transitioning to male because she was told that if they do that that if she agreed to the surgery and raised me female and reinforced female that I would definitely be female and I am female I feel female I don't have any gender identity issues you know I don't know if my brain if my gender necessarily feels female but I present female I'm just am Who I am you know I'm happy just being Betsy I'm not really worried about the genders and all that and the gender binary and fitting in but as I was starting to come out and speaking out it was a huge concern of hers absolutely huge concern of hers now I understand in that time period the doctors always chose to do the surgery as they did on you because it's it's easier to remove it and it would be to rebuild Jonas and I'm saying it is yeah was it the right choice for me I don't know I mean it left me without my clitoris is that the right choice to make for any child did Leah but to leave someone without a clitoris the choice to their parents are left with the choice do you want to make a child male or female Oh in some types of intersex situations that is it that is a decision parents have to make and usually it does go female because the surgery is easier it's one very famous doctor quoted at a conference you know doing a speech it's easier to dig a hole than it is to build a poll however that's not really a good way to look at it for all for all the different types of intersex conditions my situation for instance with you know having an enlarged clitoris it was just simply saying you know we don't think she's going to be a male you know we're not doing a sex reassignment surgery here we're just taking away her clitoris because we can't have a little girl running around with a big clitoris it might give her too much pleasure when it grows up when she grows up I mean I don't know that that's what they thought but you know really that's what we're talking about when you remove clitoral tissue what is the problem do you mean miss EAH yes CAH as an intersex condition only affects females males born Oh CAH are not affected within you know this the genitalia the incidents of CAH itself is about 1 in 15,000 so if we're just talking about the female so it would be about one in 30,000 and there's a varying degree as to how vera lies that the child may be you know one girl with CAH may have just no no viralization and not be born with an enlarged clitoris another girl with CAH may be born with a slightly enlarged clitoris another girl might be born with the hugely enlarged clitoris so it's really hard to say how many are getting surgeries I don't know and I don't know that anybody has been really tracking that an overall percentage under the didn't know if based upon the research of Anne fausto-sterling we estimate and I think it's a conservative estimate but it's the number that we use and that my organization uses is about one in 2000 and the one in 2000 is the number of births born that are visibly intersexed at birth however there are some types of intersex conditions that are not obvious at birth so and may not get discovered until puberty so when you start to include all of those numbers in there it could be as high as 1 in 500 and I have actually seen some numbers by some experts who I respect who will say it's even as high as one in 250 if you get into the very pure definition of intersex being anything that differs from standard male or female and I say standard because it's what what medical and society says is standard male and female you know there's actual measurements at birth you know that a penis must be a certain size at Birth stretched to qualify to be a healthily normally developed penis and that's about two and a half centimeters it's the same thing for eclair so the clitoris is larger than about 0.9 centimeters at birth medically on the most basic term is considered to fall outside of standard female so therefore they could be considered to be an intersex condition they do do it they do do gender reassignment surgeries based upon the size of clitoris or penis usually not based upon the size of a clitoris they will sometimes reduce the size of the clitoris if it's deemed to be too large by somebody who believes that they have you know the child's best interest in mind however they will do periodically sex reassignment surgeries on boys born with something called micropenis and that is a penis that does not two and a half centimeters stretched at birth and they presume they being you know doctors and others who think that you know this needs intervention that the child will be happier as a girl and also being addicted then we're also subjecting this child to a lifetime of hormone replacement therapy as a girl rather than being a male with a small penis you know our society places a lot of value on the size of a man's penis which is very very sad one of the things points it all off and make is when we have a boy born at the hugely enlarged penis and some boys are born it's really really big penises and there are men out there with really really big penises we don't cut those down in size even though it may be hugely uncomfortable for them for a woman if they're having heterosexual sex it might even be very uncomfortable and other types of sexual acts but we don't do anything to reduce the size of that whereas if it's a woman with a big clitoris it's like oh my gosh we can't have that we can't have a girl running around of the big Flint she might be a lesbian where she might have gender identity disorders it's the same thing with the boy born Filipino said he will not feel man enough and one of the things we often hear about in lots and lots of doctors will say this you can see it in documentary after documentary and interview after interview well what about how will they survive the locker room so what we're doing is we are you know what they're doing is they're taking and sacrificing a lifetime of who they are of who this person is for that short period of time in the locker room rather than focusing on what the real reason behind that is and that's society society who says you know beat up the little boy with the little penis and if you ask boys and men who were born with small penises you know if they would rather have been sexually assaulted his female rather than being themselves with a little penis yeah they almost always will say no they're happy they learn how to be sexual in other ways if they can't help if it's so small that they can't even have penetrative heterosexual sex or even any type of homosexual sex or any type of sex for that matter they compensate you learn how to compensate it's the same thing with me without having my clitoris I've learned how to compensate with my brain so you're saying there's a double standard absolutely there's a double standard absolutely you know a boy has to have a big penis a girl with the big clitoris is no good penis is not going to be man enough you can tell I'm getting comfortable with so we can go back and cover cuz you seen from meaning from size when you seem like a great person really I know I know it's been a journey for you so talk to me a little bit about the journey it has been a journey Stef about my goodness has it been a journey I'm 40 years old and I feel like I've just become that journey still growing up I was not made to feel any different except that there were all these overnight hospital stays and all these genital checks and even though nobody ever talked to me about what was different about my body I knew knew that something must be so horribly different and horribly wrong with my body and with Who I am you know to get all this attention you didn't think that that was normally you didn't think every kid what God was doing but this was happening to every kid this was just a normal part of life I thought that it was a normal part of life early on it didn't take me long to realize that it was not a normal part of life because I had friends and my friends didn't have that happening to them and not that I talked about it cuz I didn't have the language to talk about it but I really need and in fact I remember being very young probably eight or nine years old and my parents had a you know a nice set of World Book Encyclopedia and of course we're talking long before the internet so this was my only research and I remember being about eight or nine years old and looking up like what is male and why didn't female looking at these pictures and recognizing going something's not right here but again I didn't have the language I only had my childhood fears and doubts as to what was going on and also then in looking up words like hermaphrodite in in the encyclopedia at a really young young age where did I learn that from I don't know of course I probably overheard it throughout the course of my medical treatment I talked about you know very briefly about all these hospital stage stage days there were several times as a very young child and in fact one of my earliest earliest memories is of being in the hospital on an overnight stay and I would go in for a routine blood work and blood testing it was the 1960s and then early 1970s Oh Chris hospitals were very different than and parents were not allowed to stay overnight like they are now with their kids plus it was routine I would do this ever to have this every 6 to 12 months and I remember these like gangs of medical residents who would come into my room and like turn the light on in the middle of the night and of course my legs apart and they were basically doing a show-and-tell and poking around and looking and I was being used as a medical exhibit as a learning tool oh goodness I was probably 6 6 7 that continued however throughout until I was about a young teenager and I just didn't know I did not know this was not normal and that this was not right with that experiencing back at it I really consider a childhood sexual abuse that was perpetuated upon me in a medical institution absolutely you know my parents did the best they could to protect me my parents were lovely wonderful wonderful parents my dad's still alive I mean I absolutely truly loved him dearly my mother did not know that this was occurring and I did not know how to talk about it because I thought that it was normal I mean it's very classic childhood sexual abuse I thought that you know all the kids had this happen to them and it wasn't until I was an adult that I recognized that for what it was I knew that I had a medical condition called congenital adrenal hyperplasia because I take medicine for it and the CAH is also one of the very few types of intersex where there can be a separate medical emergency that is associated with it I take medicine you know the medicines twofold I take a number one to stay alive because my body doesn't produce enough hormones and enough cortisone and doesn't my adrenal glands don't work properly I mean without getting into you know science and medical my adrenal glands don't work properly I do I take it daily I do take medicine I take it daily however one of the things I learned as an adult is the purpose of that medicine is twofold because my body produces a lot of androgens that you know vera lysing hormones without taking that medicine if I didn't have the life-threatening aspect as well I would masculine eyes very quickly I would get facial hair I would get male pattern baldness I would probably develop a male pattern muscular structure and could probably is a clear at least appearance-wise transition to a very male looking person very quickly without the use of any testosterone or other hormones I never learned that as a child which was very bizarre as I've learned that as an adult and what I've done is I've cut back I do a lot of self-medicating which of course all the doctors out there are gonna go oh my goodness don't do that but I've learned how to balance that out to just take enough to stay alive and be happy with who I am and how I look and of course I'm not feral izing so it's not that big of a deal but some women will that have CAH but you see that stuff was never told to me that was part of the whole secret the surgeries were never told to me that clue directed me was never shared with me even the vaginoplasty at my very early teens I was you know 12 I was very sexually immature you know because there was never any really sex education that went along growing up the birds and the bees which of course because I was different and I think that would happen is nobody knew how because I was different and of course nobody knew how to talk about that with me you know how do we explain that you know normally we would explain that little girls do this and little boys do that and of course and I was kind of somewhere in between so there was silence the night before I had the vaginoplasty the first vaginoplasty had done at his creation I'm a vagina opening they did send a therapist up to see me who gave me a wonderful biology lesson that was way over the head of a twelve-year-old trying to explain why I was born without a vagina that didn't really matter I needed to know why my body was just different and so there was very little counselling offered by the medical caregivers those involved with my medical care there was some as I was a late teen did he get into too much of the surgeries and all that you know I do remember and instance when I was probably 18 or 19 year old 18 or 19 years old in having the physician who treated me as a teenager she was not involved with my care as a young child when these surgeries were done that said you know I'm sorry but you had a full clitoridectomy done on you did I know what that full clutter ectomy meant and how it would impact me no because I wasn't sexually active at the time I had no clue you know I mean I was just trying to survive I wasn't about to be taken taking my clothes off in front of anybody and exposing my queer body to them growing up then throughout my young adulthood and you know negotiating the dating scene and you know and recognizing that I was also a lesbian that you know I tried dating boys but you know never had any sex with them never even allowed anybody to get even close to my genitals and then trying to deny the fact that I was a lesbian and then growing up and as a young adulthood and the first time I had sex with a woman as a young adult in college was when I realized just how different I really was and it just blew me away absolutely positively blew me away and it was hugely traumatic you know that realization of that first sexual encounter was huge you know because I didn't know oh my gosh what is it you know how just how queer and how different my body was and I'm thankful that that woman who I was with that one time in college for that first time did not make that big of an issue out of it it was a huge relief for me however there was nothing ever pursued again because I was like just so shamed by it and so embarrassed by it as to how do I talk about this how do I preface this before becoming sexually active as somebody the end result of that was is I basically didn't become sexually active again for a long time there was a second time then a few years later where I again had a sexual encounter with a woman and then I learned afterwards that her reaction was very different and although her reaction to me to my face was fine the reaction of her telling all my friends in college and other people I knew that I was a hermaphrodite it was horrible I mean it damaged me it damaged me beyond belief so again I didn't date for several years I kept to myself and and I still didn't quite know what the deal was I was away at college I was you know on my own as a young adult and I didn't know really how to proceed with this information or what to do with it so I basically I was just flying under the radar for a long time I ended up then in a relationship for about 7 years with a woman it was a good relationship she was fine with it but again I don't know that we that either of us had the language or understanding as to what was so different about my body other than it was different and she really liked it you know I do have without getting into too many details about you know what's between my legs even though I don't have a clitoris I've got you know some other other some other attributes that can be fun and can be used to make sex enjoyable when we broke up out of that relationship it really wasn't the fact of the break-up that really traumatized me it was the fact of the realization that I was going to have to start dating again and I didn't have to start dating again but eventually I would want to start dating again and I'm going to have to negotiate this whole fact of my body being different eventually I did start dating again and I met a woman who [Music] really she probably doesn't know it and in fact if she watches this maybe she'll recognize herself I started dating a woman we had wonderful sex absolutely positively wonderful sex and she encouraged me to find out some answers and she knew what intersex was and I did not yet I didn't have a computer at the time I was still trying to fly under the radar and she encouraged me to learn more and they did and then she broke up with me but that was okay well this woman absolutely she came into my life we had this torrid affair for a little while she lived in LA and I was in Atlanta and she encouraged me to find out more and I did and I got myself a computer and one of the first things I did was type in congenital adrenal hyperplasia I still didn't quite know intersex and what I learned number one I learned that I was not the only one out there with a body like mine I really thought that I was the only person out there with a body like my aunt like mine of all the millions and millions of people in the world I was alone in that in that shame or so I thought and I went online and I started reading and I started reading stories from other women and I started to write my own stories and I started to share my own stories and I started to post this stuff on the internet and I also did seek some counseling at the time and there had been counselors you know mental health caregivers therapists that I had gone in and out of to see periodically before this time in and out nobody was ever able to nail down what my issue was but a lot of that again they didn't draw it out of me and I didn't know what my issue was you know I did not know what was behind the self-esteem problems I did not know what was behind the shame that I was experiencing I thought it was because I was a lesbian but it wasn't and I realized that when I came out as a lesbian nothing came out fairly young my young 20s when I realized and I came out to my friends you know and I've been out with an employment for years I mean longer than I can even remember but the realization that perhaps the self-esteem problems were because of my queer body really started to bring it all together for me so I ended up going to see this therapist right after this woman who I talked about and I said you know I have something called congenital adrenal hyperplasia do you think that has anything to do with what I'm going through and what I'm experiencing and she thought about it for a moment about not and said yeah I don't think so well it hit me that I've got some other issues to deal with and so I dropped her stopped going and I basically began a period of healing and and self-realization and healing wrote my story posted it on the internet started to hear from other women with the same thing and it just opened up a huge world to me and since that time since that kind of epiphany that I went through you know things have been great you know I'm happy in my skin I'm not ashamed to date I don't have a problem explaining to anybody who I want to you know have sex with rather relationship or otherwise what's different about my body I tell them I've learned how to compensate for that very very nicely actually whereas when I am with a woman and in a relationship it's great sex it's absolutely great sex but I had to become comfortable in my own body and I had to know the answers and I had to know the vocabulary about my own body before I could learn that and that was never given to me growing up it was never given to me by my parents it was never given to me by the few mental health care givers at the hospital where I was treated at attempted to provide because they were the caregivers were under-qualified themselves they were following rules of the shame and the secrecy don't share concealment centered protocol if we don't tell her what's going on she'll be okay it was never given to me by those doctors it was never given to me by anybody and it wasn't things and then it's anything that was in the newspaper and until I discovered it on the computer on my own I was helpless and I was just wandering like trying to fly under the radar that is correct not every person who isn't interested who as an intersex condition is a lesbian not every person who has an intersex condition identifies as female there are some men with intersex conditions who did not have any type of surgery because there are so many different types of intersex conditions I mean there are the variation is just incredible and while there are not a lot of studies that are studying you know the rate of homosexuality and intersex conditions or the relationship between homosexuality and intersex there are some conditions where anecdotally you see a higher incidence of homosexuality whether gay male or lesbian or bisexual and for instance with congenital adrenal hyperplasia I know a lot of women with congenital but the CAH congenital adrenal hyperplasia who identifies lesbian or bisexual however is there research to back it up no is there research to disprove it no the problem is it hasn't really been studied that well there are some small studies that occur but they are small and they're small samples but to give you an idea as to the role perhaps is homosexuality genetic let me put this out here for you to think about there's a higher incidence of lesbianism of when there's a higher incidence of women let me start that over again there's there's a higher incidence of women who are lesbians and there is within the general unaffected population okay these are women that are xx there's there's a higher incidence of women with CAH who are lesbian than there is within the general population I mean that is a fact that is studied there are some small studies out there that show that is it a huge amount no but it is higher than what we would see in the unaffected population these are women xx genetically that is their female genetic claim they have a uterus they have ovaries they identify as female usually not all but usually identify as female and have this a lot of testosterone that they're that they're it's subjected to that they're exposed to in utero and so therefore so these women have a higher incidence of lesbianism and I can repeat this by the way to kind of put this all together at the same account you have women with something called androgen insensitivity syndrome that is these are women who are XY genetically are born looking female a lot of times they're not diagnosed until at well after birth with a I guess whose bodies do not excuse me whose bodies do not respond to testosterone that well so they do not mask on eyes so they look female their body is producing this asterisk Ostrom but their body is not sensitive to it most women with the is not all but most are heterosexual so what does that tell you here you have somebody who's XY genetically you would think that they would automatically be attracted to other women but they're not very attracted to men and generally the physical appearance its female oh there's no doubt that a woman with with complete a is as a woman there's absolutely no doubt I'm just a little while they're there they're born looking female they have XY they're genetically XY which is what is considered standard male but their body doesn't react to testosterone so they grow up they have a female a gender identity usually they look female they act female they identify his female and again if you saw a woman with the is who did not you know didn't have her clothes I mean you would think that's a woman but it would be no doubts but she is male chromosomes no no no she may have I don't get into too much of the medical because I'm not a medical person she may have undescended testes they're generally removed before puberty to keep the testosterone out but this is a woman there's no doubt that you would think and a lot of these women with AIS identify as heterosexual they are attracted to men so as a society we just maybe need to start the conversation that there may be more than two sexes there's more it's not just male and female when Pastor sterling studies the five saxes well you know and okay let me just address that real quick leisure since we can jump around thank goodness to cutting and splicing and editing I know it's take but I say that anyways I'm an old radio person who used to splice tapes he's the splice quarter-inch tape the intersects advocacy movement for the most part at least those that are out there and working to change the medical protocol and working towards acceptance of intersex do not advocate raising a child outside of male or female we advocate raising a child on the most likely outcome based upon what is known without doing any surgical reinforcement and with the understanding that initial determinations may be wrong and until the child tells us who they are and what gender they are that is male or female we have no way of knowing when you have an infant who's six or eight months old you have no way of knowing if that child is going to identify as male or female most children will start to identify and express their gender by about the age of two there's a study that's out there and I'm sure that and fausto-sterling is aware of it and you could ask her whereas children at about the age of two can identify other boys and girls in a crowd before they can identify people of different ethnic backgrounds however some adults with intersex dude identify outside of the standard male or female binary and that's great you know people who don't have intersex identify outside of standard male or female binary and that's great people as adults have the right and should be allowed to identify however they want and whoever they want to be however I don't think it's the responsibility of anybody born with an intersex condition to work at erasing the gender binary most people with intersex do identify as male or female and actually most identify in the gender that they were raised in it's only a small but not insignificant number keyword being insignificant they're a small but not in significant number of people with intersex do change genders from what they were raised in they don't always identify as transsexual or transgender quite often they're just reclaiming what was stolen from them in childhood particularly if there was a sex reassignment that was done during infancy but you know I think it's great but those theorists and the ethicist out there the theorists and the scholars out there who say oh you know intersex people should be treated as a third gender or third sex that's that's baloney you know what let me identify how I want to identify I would never ask you to identify as something other than you are and the other issue is is to ask a parent of a newborn child to raise their child without a gender or without a sex it's very unfair both to the family and to the child you're pretty not an entire another layer of stigma on top of the situation that you already have at hand you know gender male or female assignment is a social and legal requirement in our society and it must be done but you can do it without surgically reinforcing it and you can do it with the understanding that things may change and until that child tells us we're not going to know who they're so was born what's didn't what steps should be taken immediately breathe breathe there's no rush even though everybody in the in the delivery room is acting like there's a big rush there isn't unless there's an absolute medical emergency that needs to be treated immediately there is no rush genitals that look different are not diseased jenner genitals that look different will not kill you genitals that look different are okay they just look different when you really want to get down to it it's really no different than having a child born with any other physical difference from what is standard made from what is considered standard if you have a child or another huge knows you're not going to be rushing that child off to surgery look at it the same way you know it's recognized and it's understood that you know it's a huge shock when you have a parent who has a child born with an intersex condition and they've never heard about it before that's a scary place for any parent to be it's a scary place for anyone to be it throws into question everything that we come to assume and that is what makes us male or female is it our genitals is it our chromosomes is it our gender identity is it the way you perceive our my gender identity who's to say and all of that gets questioned but you can breathe spend some time if you don't have a computer go to the library and look it up ask lots of questions write letters contact the organizations that are out there working to working on intersex advocacy and ask them what they think ask your doctor if they have any other parents who have dealt with this and how you can and if you can meet them asked to meet adults when they say that the surgery must be done before the age of 12 it doesn't need to be done you need to ask them very very specific questions about it because otherwise you will be led down a path which you may regret and your child may regret very very deeply at some point later one of the big things that's very difficult for parents to understand is when you're holding that infant and that infant is just a few days old and you don't know if this child is gonna be male or female you need to move past that you need to think about 20 years down the line when this person becomes a sexually active human being and that's really difficult for parents to think about and what will happen to that child sexual happiness you need to think about that child's future sexual happiness when they are sexually active you need to you can't assume that that child is going to be heterosexual or gay or lesbian or bisexual you just have no way of knowing and so you need to think about these things before you you move and act on it so it seems like there needs to be someone like yourself going because originally from I understand traditionally there was a considered a social emergency and a rush to surgery correct that's correct I mean they can what we call within the advocacy movement is the concealment centered protocol that is Russia to surgery don't talk about it and everything will be fine but that's not the case shut the door yeah and they know you're saying we rush to surgery oh the current concealments entered protocols still being practiced by many hospitals in the United States not all summer changing is to rush the child to surgery that is usually before about the age of 12 to 18 months don't say anything don't talk about it often parents are not told exactly what's happening they're not told that you know perhaps clitoral surgery will be done or what's going on parents are scared so they're willing to follow whatever the doctor says and then one of the key parts about the concealments entry protocol is to not talk about it generally there is not the enlistment of a qualified mental health caregiver there's often not the enlistment of a social worker there's often not the enlistment of a medical ethicists which is a very big deal there should be a medical ethicists involved in this decision parents are not told that these surgeries are generally still experimental they're experimental because there is no follow-up data that proves that it improves the child's quality of life it just isn't out there they're not told that there's that the surgeries themselves are a point of contention amongst many what happens when a child is born the child and the parents are almost a victim of where they're where where this birth takes place and often who's on call depending upon I mean the state of intersects treatment in the United States right now because there are no guidelines what happens to that child was almost dependent upon who's on call that day or that night in the hospital where they're born as to what will happen throughout the rest of that child's life and as far as surgery goes that's why you need to breathe you need to get other opinions you need to talk to people the concealment center protocol ISM mentioned does not generally involve the use of care of mental health caregivers one of the big issues that is in dispute as to whether or not parents are even able to give informed consent for cosmetic surgery on their child in almost all cases this surgery that's being done is purely cosmetic in nature so how far we advanced since your experience with the combination of information or for people who have grown up there's very not that many adults who have grown up without surgery most adults who are out there have had surgery of one sort or another there are some who have not they're very tend to be very happy that they have not had surgery and they would not choose it as an adult on their own the Internet is making huge strides it is making information available that may not be otherwise available to some parents it's making information available that perhaps doctors are not sharing with the parents for instance it's also allowing people to talk to other parents and that's huge I mean it it's sad in a way I mean it should be different there should be in-person face-to-face networks set a peer support network set up amongst parents locally but that's not happening yet because a lot of times people are still you know living in shame and secrecy and they don't want to talk about it particularly particularly in person that's changing slowly and I think we can think the internet for it the work of the advocacy movement is slowly moving forward the doctors are paying attention to it people are paying attention to what we're saying and what we're doing they are reacting to it they are starting to do more studies there's a lot more media attention now on the issue and its legitimate media attention that is not shameful that's not ridiculing people this is not what has been done in the past and you know network news magazines where they put the person with the intersex condition behind a potted plant more people are starting to come out of the closet more people are starting to speak up and saying this is my story this is my history this is what was done to me ironically as an advocate doing peer support we see with bodies like ours three points of contact that occurs we often will hear from parents of a newborn off and on our message boards who will post and say you know how should I do this or what should I do or we'll hear it directly well often hear from parents when their child is a teenager and there's self-esteem issues or perhaps self harming or drug and alcohol abuse and they're reacting you know and they've been raised under this protocol of shame and secrecy and now all of a sudden parents are realizing jeez perhaps I should have talked about this with the child and they haven't and then everything gets quiet and then we hear from people with the intersect you know those with intersex themselves about the late when they hit their late 20s mid and that's coming down that's coming down quickly as the internet is becoming more and more prevalent but mid to late 20s to early 30s and they're starting to realize going wait what is with my body what is up here am I the only one and they're realizing that they're not when a child is born with intersex chances are the parents have never heard of this no matter what the condition is and there's so many different conditions so I mean just using intersex as the umbrella term with one a child that's born with one type of intersex parents have never heard about this and yet it's about one in two thousand live births that's about the same number of people born with cystic fibrosis which everybody's heard about it's about the same number born with Down syndrome everybody's heard about that and they're aware that these things can happen but nobody's ever sharing with you know expectant parents going this might be an issue that you're going to face there is a one in 2,000 chance that you're going to be facing this issue perhaps you should think about it now what you're going to do and if parents can be prepared ahead of time half the battle will be one half of our battle as intersex intersex advocates you know promoting a better patient centered protocol will be born because there won't be that panic and parents will be prepared and hopefully they'll know what some of the issues are before they get scared and before that you know codependency sets up between parents and physician one of the other issues that occurs when there's a child that's born is the parent becomes the patient everybody's concerned well we have to do this for the parents and you know the parents won't be able to bond with the child the parents this the parents are scared the parents are traumatized what will the parents tell the friends and neighbors it's all about the parents and the child gets forgotten about so we're fixing the child we're changing the child we're surgically altering the child to make the parents happy and there's something wrong with that equation there's a lot of surgeons out there and physicians out there who will tell you that things are different now that people like Betsy driver have no business talking about this because what was done to me isn't being done anymore and to a certain extent that's true but just because technique has changed does not justify the fact that these surgeries are still cosmetic in nature anytime you cut tissue I don't care if you have the best technique in the world and I've won a Nobel Prize for it anytime you cut tissue you're going to leave scar tissue and unfortunately the technique that's being done today that's being held up as you know the gold standard we still will not know the results of that so-called new gold standard technique to the child who was subjected to it grows up and becomes a sexually active adult there's absolutely no way for us to tell you can put all the probes you want on a clitoris to see if you're getting you know nerve sensation but until that child grows up and can say yes doctor this clitoris works we don't know that the other issue that happens is constantly changing techniques also lead to a situation where when that person is grown up we don't even bother asking her if the technique works because they've already moved on to new techniques and they'll say that well her opinion is invalid because we're not doing that technique anymore you know that does not overcome the fact that this child had cosmetic genital surgery done on her without her consent and while they may not be doing full clitter rectum ease anymore in the United States how many are how many surgeries are botched how many clitoris is due come off because you're working on a really small piece of tissue and then that aspect in that little mistake is never shared I'm not convinced it doesn't happen I'm convinced that it does happen based upon what I've heard from people basically so let's just make him a girl that was a documented fascinating story however not intersex a case study where gender reassignment is not successful there are there are some who have sex reassignment done on them some with intersex who have sex reassignment done on them as a child and they do identify in that gender that they were raised in and who were assigned that's not unheard of however a lot of them do go back to the gender and sex that was stolen from them through sex reassignment surgery a common misperception by a lot both within academia within society by some news organizations as well as by a lot of transsexual organizations is that intersex is some some form of transsexuality or vice versa that transsexuality is a subset of intersex and that's not correct it just doesn't happen that way intersex is something that you are born with it's a congenital condition and there will be those who will say well transsexuality is something I was born with as well and that I'm intersex in the brain according to the current definitions of intersex there are two different things one of the things I often will mention is that you know they although we are very allied and we work together and I like working with you know the trans organizations I look at them as allies I look at them as great co-conspirators in the big picture of the world but I look at us as having different agendas they want access to the health care and surgery and they should get that we want the surgery to stop until the person who has that body can make up their own mind about it we don't have an issue with anybody born with an intersex condition choosing to have surgery at some point in their lives when they are old enough and can legally give informed consent for it that's great if you want to have surgery absolutely go for it we have issues with it taking place in childhood because it's generally irreversible it cannot be undone once it's done it's done one of the problems with convoluting the two issues is it confuses people and it doesn't do the trans movement any good because it distinguishes away from what their needs are and their very important needs and it doesn't benefit the intersex movement as well because it it distracts from what the needs of the intersex movement is part of the problem that this has come up about is because of this whole trend for a lot of organizations to change their Rachlin acronyms to LGBTI lesbian gay bi trans and intersex by including that I you're implying that intersex is a behavior which it is not that intersex is a gender identity it is not that intersex is a sexual orientation it is not it's none of that stuff where is when transit and when you get into transgender and transsexuality you're saying that this is a sex this is a form of sexuality this is a form of gender that's not the case with intersex intersex is something that's often a physical difference an absolute positively physical difference that people are trying to hide and change and make different to suit their own purposes where's that's not the case with trans sex the issue at the home is with the you know homosexuality and lesbian and gay and bi you know we within the intersex movement have looked to the LGBT movement and we have looked to them for guidance we have looked to them for assistance as the movement has grown the intersex movement is only about 10 years old I mean we are still pre Stonewall in our activism and in our awareness as to where we're going with this but because there's a lot of marginalization within the queer movement the LGBT movement there is a marginalization there is that shame we have looked at them and as that model to help us through this you know somebody who has only experienced the stigmatization of being homosexual homosexual in this society that seems to hate us so much can understand what it's like to have your body physically changed for the same reason you know for the same root reason I should say you know when they do this so we've looked at that quite a bit but not everybody with intersex is LGBT and that really needs to be made very clear a lot of people with intersex are happy heterosexuals procreating throughout the world they're just living their lives happy as can be the one underlying thread however that I see in here from from a lot of folks is that while they're happy and they're living their lives and perhaps they have kids and their parents through really upset about the surgeries that were done on them and even if they have no intention of ever coming out of the closet as somebody who was born at the queer body they would like these surgeries to stop dexamethasone or some other hormone to I would just say hormone prevent a potential intersex baby from having issues like if your mother had that do you think that would been a choice that would have been good for her to make I have very strong feelings about the use of prenatal hormones to prevent what to be to be prenatal hormones are sometimes being used weird there is a history of some type of intersex condition the only thing that those prenatal hormones will often do is reduce the amount of aryl ization it will not make other issues go away there may still be some realization we just don't know exactly what the long-term outcome of that is and again just like with surgeries nobody has done any follow-up studies yet so somebody who was given dexamethasone or some other hormone prenatally how will they be when they grow up will they have you know any mental health issues we don't know we just have no clue so you may have a girl who's born with a smaller clitoris but at what cost it's hard to say one of the issues also that goes on and I made this point once at a medical conference that using my own situation if I was born you know I was born with an intersex condition if my mother and I had surgery if my mother had taken dexamethasone or any other hormone to try and prevent the Verrill is a ssin that I was born with for the next child how would that make me feel would that make me feel just so horrible that something was wrong with my body that bad that something needed to be done to prevent another child with a body like mine and enough that makes me feel very good and though it kind of makes me feel really unwanted very ugly when I really think about that another issue with genetic testing is that there's a lot of children that are aborted because they carry a gene that could cause an intersex condition it's so it's considered to be so horrible that it would be better to abort that child and that child would probably be a very good contributing functioning member of society but better to abort than have a child born with intersex and and as pro-life excuse me as pro-choice as I am that bothers me yes oh yes yeah they test for different conditions they test for things like Klinefelter's which is a chromosome variation or Turner syndrome which is a chromosome variation and women with who carry this gene are often and the bit the child look it's showing up in the child the child has that gene will often be offering abortion and that's it's kind of sad and it makes me know it's just ugly bodies like ours as was founded in late 2001 the planning I should say four bodies like ours began in late 2001 it was kind of interesting how it happened as I became more familiar with my own intersex condition and began to talk to other people and meet other people with it I would have been fine I would have been fine just getting on with my life and saying you know this really stinks the surgery that was done to me stinks it's awful nothing I can do about it I'll get over it move on and live my life but when I learned that parents today are still having surgery forced upon them and upon their kids no differently than what my mother had done to her and that what I had done to me today in US hospitals that really upset me when I learned that five children a day are still being subjected to cosmetic genital surgery in the United States alone that upset me that is so unnecessary and so that pretty much moved me to starting to speak out it moved me to come out of the closet as somebody with an intersex condition it moved me to speak out and it moved me to see if I could make change in this world I became involved with the intersex Society of North America someone I started to speak out of the urging of Cheryl Chase and as I began to do that I realized that there was really no outlet for adults I was no outlet for easy to understand peer support information whether for adults or for adults or for teenagers for nobody and it snow was moving very quickly into the medical advocacy end and they're doing a wonderful job changing medical protocol they are getting hospitals to pay attention to them they're getting hospitals to change the way that intersex is treated they're getting hospitals to adopt a patient-centered protocol they're getting hospitals to involve medical ethicists beginning hospitals to involve mental health care givers they're getting hospitals to involve some peer support for parents they're getting hospitals to give better informed consent to parents before it surgery is chosen that's really wonderful I mean they are changing medical history bodies bodies like ours came along because to fill that peer support for it you know well what about those who have already had this done to them what about all the adults who are out there thinking they're the only ones in the world bodies like ours is a peer support organization primarily for people born with intersex however we do make services available for parents of children born with intersex those services basically include hooking them up with adult survivors or other parents in their area earlier this spring the city of San Francisco and the city of San Francisco Human Rights Commission began what is a very exciting process they held the first-ever governmental public hearing about intersex issues known to occur in the United States on that night in May several people with intersex conditions showed up and they testified before the Human Rights Commission parents showed up as well scholars and medical ethicists showed up as well the overwhelming theme that was repeated time after time after time during that evening that public hearing was how damaging the current medical protocol in the current medical state of affairs is as a result of that public hearing the Human Rights Commission and the intersex taskforce of the Human Rights Commission in San Francisco has been preparing a report that will include medical findings social findings ethical findings as well as recommendations in all three of those medical recommendations ethical recommendations and social recommendations if this report is adopted and hopefully it will be adopted by the time this airs the impact that this report will have on the current state of affairs for intersex treatment in the United States is going to be dramatic it dramatically changes the way informed consent will be given it dramatically changes the way that it dramatically changes the requirements of hospitals and at least was licensed in San Francisco and who received city funding will need to treat intersex including peer support including informed consent and including social changes that go on as well it's very exciting it will definitely make a big impact in the treatment of intersex in the United States if San France the San Francisco the San Francisco action will dramatically alter the way intersex is treated both in the United States hospitals and I believe socially if it's adopted late last summer late in summer of 2003 I received a memo in my mailbox that was sent to me by a friend up in Hartford Connecticut this memo was released by the Children's Hospital in Hartford Connecticut the Central Connecticut Children's Medical Center and it was an announcement for continuing education medical credits continuing medical education credits announcing a visiting lecture by a surgeon who does a lot of intersex surgeries he does a lot of them and he was going to be giving Grand Rounds and the next day he was going to be making available and the hospital was going to be making available a surgical procedure being done on a child that was available for viewing within the hospital for others seeking CME credit so basically what we had happening was a child whose surgery was going to be publicly displayed by those qualified to show up and watch and she probably didn't know it did she give consent to have that that surgery broadcast throughout the hospital I don't know did her parents give consent I don't know when we received the memo we did not know how old the child was I still don't know how old the child was I have been told different ages I have been told different things I never investigated how old the child was it didn't matter the issue that occurred with this situation was the fact that they were making this surgery publicly available for they were violating this child's privacy and they were using her as a medical tool they were using her to teach other people what to do it's not the responsibility of those with intersex to be medical tools or learning tools it's not our responsibility it's no more responsibility for any for somebody born with any type of physical difference to be the teaching tool for others and that's what upset us so we organized a very small protest it was not big it was about 20 people it was on a very early on a Friday morning it was drizzly we were out there in front of the Hospital in Hartford you know just raising awareness about intersex which was really the whole point we weren't out after canceling the surgery we weren't out to change medical protocol in this hospital we used to to raise awareness as to what was happening in that hospital I suspect that most people in Hartford do not know that they're doing genital mutilations and they're in their beloved Children's Hospital in downtown Hartford Connecticut people need to know that their children's hospitals that they love and care so much about are doing these surgeries and they're doing there frequently and they're doing them in ways that perhaps shouldn't be done and they're making you know spectacles out of children you know by broadcasting this this procedure it basically made a spectacle out of her does invasive but it seems like it could be a tool to better help intersex people and to educate doctors on down there No you know there's two sides to every story and as and I can see their side by saying well this is a tool how else are we going to learn but that's the same thing that the medical residents were told when they came in and sexually abused me as a child it's the same exact thing how else are we going to learn well you don't need to be learning at my expense there's lots of pictures in textbooks perhaps the doctor is promoting these big new techniques should learn how to be better teachers without having to you know invade the privacy of a child perhaps they should also getting back also real quickly to take Connecticut when we were planning this one of the things we brought up as we said well if you're gonna be there teaching the new techniques why don't you have somebody in saying you know this is what the intersects advocacy movement is saying this is what the intersex movement is doing this is what adults are doing they blew us off and so there we were there we were on a Friday morning eventually they did invite us in and one of our representatives of our representatives went and did a Grand Rounds and a panel discussion at that same hospital they listened they learned more about some of the issues they learned more about what we were doing so overall was it a success yes I'm sorry that you know some people feel that perhaps it was not good one of the things that bodies like ours did not do we never made it about the child other people did make it about the child I mean there were messages and message boards particularly those frequented by children who were saying things about the child that we didn't know we had no clue and we weren't interested in knowing this wasn't about the child this was about the fact to raise awareness that they're doing these surgeries they're to raise awareness that they are broadcasting these surgeries for anybody who wants to earn CME credits you know I'm could be qualified if I was a nurse I could be qualified to learn take at CMU credit I could have walked into that hospital and watched that surgery and that's that's not right that is absolutely not right so how was the relationship now between advocacy groups in the medical community depends upon what what intersects group you're talking about they're related to communication beginning to be there the intersect Society of North America is making great headway into that you know they're being invited into the hospitals they're talking to the doctors the doctors are listening to them and the doctors are talking there is communication right there ironically and I heard an interview recently with Alice Drager on gender talk where she said you know the funny thing is is the medical community is looking at it's not like the conservative end of the intersex advocacy movement but they haven't changed anything their message hasn't changed over the course of ten years however organizations like bodies like ours have come along and we're a little bit louder we take a different tack we're not inch we're not our focus is not getting in the doors of the medical hospitals and the medical communities our focus is on people born with intersex so we're a little bit noise here we encourage people to come out we encourage people to tell their stories we encourage people to be a little bit noisier and noisier sometimes is looked upon as more activism oriented that were more that we're not the conservative end of the movement that we're you know the radical side of the movement it's not the case I mean we're actually bodies like ours is exceptionally conservative but we're viewed upon that way by the medical community that's okay I think in any movement you have to have lots of different voices you know bodies like ours it's not afraid to make a very loud noise they're not afraid to go out and hold signs up that say things like Bigfoot's are sexy until you cut them off and little penises work just fine until you cut off we're not afraid to do that that's not something that I think you'll see us there doing but that's okay they're not very good but I can send you a couple last question how are you today how am I you know I'm doing really wonderful in my life I'm doing something that I never thought I would be doing if you had asked me five years ago that I was gonna be sitting here doing into sex advocates advocacy and intersex ad activism if you had asked me five years ago if I was gonna be doing intersex advocacy and activism I would have laughed at you nuts I am doing so great it feels so nice to be talking about it it feels so nice to be out of the closet about it it feels really nice not to have any secrets and shame and I like that and I have a career where I'm making a difference in the world