What is Intersex?

Author: Michelle OBrien

have been asked to provide some assigned gender, and had heterosexual material from different sources, but orientation. Because of the vagueness these are requests I find hard to engage that had become associated with the term with. One is for me to provide a primer intersex, a new term began to be used on intersex for undergraduate students. disorder of sex development (dsd). The other is to give a personal biography. What was interesting about this shift I have been considering why at this stage in understanding about intersex was that of my life and research I am finding it so it included people who would not tend difficult to comply with these requests. to think of themselves as intersex, and This writing also comes out of a request excluded others who did appear to have to OII for material on intersex for a nonintersex histories. The process appeared academic audience in a medical context. to be based on whether somebody had I am very interested in writing a diagnosable condition, or persistent phenomenologically, because writing symptoms that could not be modified from an existential position seems more in a way to make them disappear. illuminating and Historically, the first thing that has to be understood intersex had been a less prone to is that the definition of intersex has changed misinterpretation much broader and than writing about and has become increasingly policed by people inclusive category, with medical, activist and academic careers. and included many facts. Facts are not always what people who would they seem. In writing about intersex, the now be considered transsexual, as well as first thing that has to be understood is that many homosexuals. This was an idea that the definition of intersex has changed and can be traced back to Magnus Hirschfeld, has become increasingly policed by people and up until the 1960s was still current with medical, activist and academic careers. anybody not part of the binary-sexed When I first learned about intersex, heterosexual normality was in some way I understood it was about being born intersex. There were assumed to be reasons somewhere between the sexes. That for this that were grounded in biology. With could be to do with having mixed genital John Money, the emancipation of gay and or gonadal lesbian people, Historically, intersex had been a much structures, genital and surgery for broader and inclusive category, appearance that transsexuals, did not match to the focus on phenotype, appearance that did not match biological causes became restricted; being up with sex chromosomes, and so on. The gay or lesbian was no longer seen as a wisdom of experts was that intersex was sickness, gender identity was developed to extremely rare. As time went on, it emerged explain the sense of sex one identified as, that people who were intersex had a set and gender behaviour was seen as rooted of medical conditions, mostly genetically in social development. Transsexuals were based, and that most intersex people were increasingly identified as biological men or not intersex at all. Many intersex people women with a gender identity in conflict did not see themselves as intersex, had with their physiology. This left only those no experience of medical intervention with issues that had clear biological markers in childhood, were happy with their as being subject to biological causes.

What is Intersex? Michelle OBrien, board member, OII UK. Organisation Internationale des Intersexus 2009

The prevailing trend with regard to term intersex became expanded to include people with biological manifestations of people with a variety of medical conditions, intersex was to regard this as an illness, even if there was no atypical sexual features. a deformity, and something in need of At the same time, those who had xy medical treatment. The theories about the chromosomes but could be assigned male social basis of gender meant that young were not included in the same way. So, the children would be operated on to make idea that there could be a similar process them appear to to piv in an xy conform more foetus exposed Historically, people who experienced closely to the to oestrogens interventions for intersex were not told gender they prenatally was what these interventions were for; in most closely disregarded, many cases neither were the parents. represented, and is still and socialise contested. That them accordingly. In the usa, for those is despite the levels exposure of women to who were seen as requiring treatment, diethylstilbestrol (des) from the late 1940s many were assigned female. In the uk, to late 1960s, and subsequent exposure some were assigned female, but others to environmental disruptors; these have assigned male. The development of been posited as underlying a range of new learning and techniques entailed intersex-like manifestations in xy males. research into the causes of the conditions The assignment of the term intersex has which gave rise to intersex states. tended to be applied to people assigned and These conditions did not always have reinforced as female, while those assigned intersex effects, but were causative of male have been discounted. This has many of the presentations of intersex: tended to be because those assigned male Congenital Adrenal have been seen as less severely affected by Hyperplasia (cah) their manifestations of these issues than Androgen Insensitivity those assigned female. The way this has Syndrome (ais) worked has been that intersex has been 5-alpha Reductase Deficiency thought of predominantly affecting people Klinefelters Syndrome assigned female, rather than male, and Turner Syndrome thus a problem for women and feminists. Mosaicism Historically, people who experienced Etc. interventions for intersex were not told As well as these, there was the exposure what these interventions were for; in many to androgens prenatally, known as cases neither were the parents. There is Progestin Induced Virilization (piv). documentary as well as anecdotal evidence These tended to for this. With the proportion who are dissatisfied with the de-coupling be about having their gender assignment is high at 6-7%. some mixture of of intersex from chromosomes, physiology, having xy through dsd, chromosomes and appearing female, having to a predominantly genetic-based set xx chromosomes and being virilized. What of disorders, people who have intersex happened in this process was that surgical histories are not necessarily seen as being interventions were carried out to make intersex at all. Instead, people with genetic people appear more female, and have this disorders are now seen as intersex, even reinforced through social conditioning. The though only some of them will have

What is Intersex? Michelle OBrien, board member, OII UK. Organisation Internationale des Intersexus 2009

What is Intersex? Michelle OBrien, board member, OII UK. Organisation Internationale des Intersexus 2009

had intersex features or experiences. underlying condition to account for this. A proportion of people who did have From this perspective, a term experience of medical intervention and such as dsd appears to be entirely intersex features have gone on to have inappropriate because it is developed issues about their gender. Even among out of a misidentification of intersex with those with what became accepted as conditions which may cause intersex. Some intersex conditions the proportion who of those affected by these disorders may are dissatisfied not have their with their gender sex development I personally do not subscribe to the assignment is high disorder model for intersex. I consider affected, and at 6-7%. Of those others may intersex to be a part of human variation. who had intersexhave their sex like histories but development not identified as having a specific condition affected, but not have an identifiable dsd. causing this, it is hard to establish, because Going back a step or two in re-cycling there has never been any attempt to the term intersex would be helpful to be investigate this beyond qualitative studies clear what is being included is about sex (such as my own). Many are regarded as presentation and development. Jettisoning transsexuals, and this may be for them an the term dsd for a set of disorders that may optimum outcome and resolution to their or may not result in intersex features would issues. Others find it difficult to relate seem to make sense, and find some other to any specific gender role or identity. term based around their true commonality I personally do not subscribe to the which is their being conditions with a disorder model for intersex. I consider genetic and/or sex chromosome basis. intersex to be a part of human variation. This conflation of intersex features with I do appreciate that there are people with conditions connected to sex chromosomes a range of medical conditions which may and genetics has made it increasingly or may not have effects that produce the difficult to discuss and explain intersex, phenomena of especially to a intersex in a lay audience. The a term such as dsd appears multiplicity of problem is that to be entirely inappropriate manifestations. one can either I also argue that such phenomena arise focus on genital/gonadal presentations, independently of chromosomal/geneticor talk about a catalogue of medical based issues. Intersex (or variations of sex conditions. I have dealt with the latter development vsd, according to Milton in some depth. Now I will talk about the Diamond) may arise because of genetic, problems with the other approach. chromosomal or endrocrinological factors, In almost no social interaction, are we and that underlying condition may require expected to discuss our private parts. treatment for health, survival and wellTranssexuals are expected to play this game being. However, that is not the same as an where they talk about this, but arent approach to intersex itself as being in some allowed to mention it either. People want way disordered, and in need of treatment, or to know if they have had the surgery but individuals as needing modification. I would as soon as they actually talk about it, this argue that the use of the term intersex be is often seen as problematic. However, if restricted to those with clear manifestations one is intersex, people seem to assume they of signs of intersex, and extended to those have a right to know all about their genitals. people with those signs who have no People wish to know all about the medical

procedures they had, their upbringing. It is found problematic (and said so). I think hard not to open up to this, because without that for a campaign to promote intersex describing how it was/is, how else will awareness to use images of children before/ people learn? But, if I am at dinner, I would during/after genital surgery makes as never ask the host whether his cock was big much sense as if a lesbian-feminist group enough for his wife, and does he find his opposed to pornography were to distribute penis improved by circumcision (or does he images of lesbian porn to lesbians. wish he had been So, what Intersex is an experience, it is an circumcised); I does that leave would not ask her experience of being different; that difference us to discuss? I about whether she is in part to do with having genitals that have ruled out are different, of having a sex that is not has ever thought a model that of labial reduction quite the same as other men and women. defines intersex and vaginal pathologically, tightening (not over dinner anyway). ruled out the generation of lists Medical meetings are often peppered of conditions, ruled out personal with pictures of before-and-after photos. disclosure, ruled out the use of images These are pretty overwhelming at to give examples. Producing some line conferences on transsexuality but those drawings showing the different stages are about adults. In an age when people are of genital development, and what can trying to tackle child pornography, public go wrong only serves to reinforce that images of childrens genitals seems totally there is something wrong in having inappropriate. I rarely attend medical other-than-perfect genitals. meetings on intersex, despite the knowledge It does not leave very much to say at all. to be gained, precisely because I do not But hopefully, in the process of eliminating wish to see these pictures. They have an what I feel unable to say, an insight has innocence about them, yet they reveal a been gained into what it is I am talking disturbing truth that a childs genitalia about here. Intersex is an experience, it is an can be cosmetically altered to appear more experience of being different; that difference pleasing as sexual organs long before they is in part to do with having genitals that are will ever make use of them as such. The different, of having a sex that is not quite question has to be asked, pleasing to whom? the same as other men and women. It may Presumably the be that involves The question has to be asked, pleasing people who saw wishing to be more to whom? Presumably the people who saw their genitals like other men their genitals as displeasing doctors, as displeasing or women even surgeons, nurses, parents, etc. doctors, when one was not surgeons, nurses, assigned as the parents, etc. What their potential future man or woman one wishes to be more like. sexual partners might have thought It may be about not really being able to fit about their original genitalia can only be in with being either a man or a woman. It hypothetical because they will never may be about wishing ones genitals and know what they would have been like. reproductive system were like other mens I refuse to engage with these pictures, or womens it may be wishing they could neither to look at, promote, use to be/could have been left alone to be what disturb, nor to illustrate. I know that Del they are. It may be about wishing one could LaGrace Volcano has used these images meet another man or woman and appear in an artistic context; that too I have normal to them; it may be about wishing

What is Intersex? Michelle OBrien, board member, OII UK. Organisation Internationale des Intersexus 2009

What is Intersex? Michelle OBrien, board member, OII UK. Organisation Internationale des Intersexus 2009

one could meet another man or woman who Intersex people are like anybody else; can accept one as they are. It may involve many will grow up and want relationships surgery in childhood, but never being told with members of the opposite sex, some about it; or, if aware of it, not being told why will not. Some may want relationships with this is happening simply that it is normal people who are the same sex; some may for some people. It may be about not having not feel happy staying the sex they were had surgery; it may be about having had assigned as. There may be a higher chance surgery and having of their not being it all explained. happy with the Surgery should be avoided until It may mean sex they were children are of an age they can people identify assigned, and so make their own decisions as gay, lesbian, it is important straight, or have to be open and no interest in sexual relationships at all. flexible about this as they grow up. If they Just as the reasons that give rise to do not feel comfortable in their assigned intersex in any individual are varied, gender, there is nothing wrong in this, it is and the expressions so varied within just how they are; the same goes for who and between the different conditions they are attracted to when they get older. (or non-conditions), so too the outcomes Surgery should be avoided until children and manifestations in peoples lives, and are of an age they can make their own their responses to them are as varied as decisions unless for serious health issues. the numbers who experience this. Few This is because any surgery reduces the intersex people I have come across are options open to children when they grow alike. From this perspective, what seems up. If a child has ambiguous genitalia, they off is not that there is such a variety of may wish to find love and companionship ways of being intersex, but that there are with someone who will appreciate them such limited ways of not being intersex that way; or if they decide to change the and yet that is the reality that seems sex that they were assigned, their options to face the majority of human beings. are better than if they have had surgery Where does this lead? Children may be to confirm the original assignment. different from other children, and develop Intersex is not part of lgbt, but lgbt differently. Some may be just like other people can be allies; being intersex does boys and girls, not exclude being some may start Intersex people are like anybody else; many trans in some way, puberty early, and will grow up and want relationships with but trans issues some may start are not intersex members of the opposite sex, some will not. puberty late or issues. Some not at all. There intersex people are medical options that will be offered will be regarded as trans, others as lesbian, to help them, but it is important to see and they may come to understand intersex what is best for the child, and that they in that context; some will be gay, and be consulted. Drugs that delay precocious some straight. This is why, when I write, puberty, affect growth, bring about I try not talk about theory or ideology as puberty will all have effects and sideapplied to other peoples experience, but effects; for example, some drugs will how my experience informs my theory make a child more male or more female or ideology. What is difficult about this it is important that the child is aware of is that in saying my thinking is wrong in what will happen, and is happy with it. some way, it amounts to saying I am wrong

about my experience but often that is the recently has moving from one to the other only certainty I have in my life. It is this become comprehensible and it has taken certainty, when it contradicts the other fifty years to get to where transsexuals are ideologies of intersex, or trans, or lgbt, or today. The things I hope for, struggle to religious fundamentalisms, or politics, or live in my life, will take a momentous shift medicine that can lead to exclusion. The in human consciousness. That is about a last thing a group that is driven by ideology change in the way people think a change wants is for somebody to step up and say on a par with the growing acceptance of but that is not same-sex sexual Few are prepared to dare to think what if my experience; relationships, we were simply allowed to be what we are. the way that or possibly even is dealt with is greater. It will often by saying not be achieved I did not have my experiences, and quickly, and it will only be achieved by thereby dismissing me as a liar. trying to live it and communicate it. It Because of the unwillingness to engage is an idea many intersex groups will not with a medicalist perspective on intersex, attempt to address, because of their concern it makes it difficult to come up with neat with the pragmatic the what is. Few glossy brochures about intersex. If I reject are prepared to dare to think what if we the pathologizing approach, and yet draw were simply allowed to be what we are. up a list of conditions and treatments So, I seek to focus primarily on intersex for intersex, would this not be a bit issues, not medical conditions that have hypocritical? Not all these conditions give been associated with intersex in particular rise to intersex, not all sex-chromosome ways that have harmed some and excluded related phenomena are of themselves others. I maintain a position of being open intersex, and not all intersex people have to a wide range of lgbt as well as straight identifiable underlying conditions. I do not people, but not allowing intersex to become deny the existence of these conditions, nor subordinate to a wider lgbt agenda that of their gravity in some cases but I deny has nothing to do with intersex. Where that that intersex itself is a medical disorder. agenda is seeking to dismantle the edifice There is no point deciding upon of gender, I am happy to work alongside becoming an intersex activist, asking for lgbt people, but where it seeks to shore information so it up, however The things I hope for, struggle to we can spread cosy it might live in my life, will take a momentous the word like all seem, I cant shift in human consciousness. some newly found see any benefit. religious gospel Some queer if we do not have theorists, such the understanding of these matters that as Jeffrey Weeks and my late supervisor comes from the heart, then we not speak to Tamsin Wilton, seem on-board this other peoples hearts. The sense of allowing project of working towards a world people to be the way they are cuts right without gender the utopia; this is why across the logic of our society, religion, and I prefer the term queer to lgbt and medical practice; no matter how learned avoiding an emphasis that maintains or intelligent we may be, common-sense fixed binary gender categories. b cannot be overturned by logic and validity. For the majority of people, two fixed binary genders is common sense; only relatively

What is Intersex? Michelle OBrien, board member, OII UK. Organisation Internationale des Intersexus 2009