Intersex Day of Awareness

Published October 26, 2013 by Katy J Went

26 October was Intersex Awareness Day.

Intersex Awareness Day fell yesterday but as with the Transgender Day of Remembrance now becoming a part of the longer Trans Awareness Week, we should not limit education and awareness to just one day a year. The more sex, gender and sexuality, are taught about, their differences and their areas of overlap, the better. As a friend has said elsewehere “we are all one but we are not the same”.

I have been told I am the wrong kind of trans, not intersex enough, not bipolar enough, and the wrong kind of lesbian – but I am certainly queer enough, but then some hate the reclaimed, new nuanced usage of queer. The “my difference is bigger/better/worse, more oppressed that your difference” rivalry, “my label is more important than yours” and “issue” oneupmanship has no place in equality and diveristy politics. Labels, even ones we are fighting for recognition of, need to be loose, flexible and tolerant, to truly embrace the diversity of difference. The only label that fits is the one we individually wear by choice, born or acquired. Whether the 6-10% that are gay and lesbian, the unknown 15% or more that are or have been bisexual, the 0.1-4% that are intersex or 0.1-2% that are trans, or more that are genderqueer and non-binary in some way – let us recognise we are minorities of one, but together we are movements and agents of change.

I have fought for intersex inclusion rather than intersex ignorance and invisibility and have encountered most opposition from LGB and even T activists. Gay rights movements were reluctant to embrace lesbian activism or recognise bisexuals as “born that way” rather than judged as “sitting on the fence”. In turn lesbians and gays were reticent to let the weird tail of LGB&T to wag the gay dog in any way despite the strong trans and indeed trans of colour presence if not prominence at the original Stonewall Inn riot. Some of the greatest levels of ignorance of trans and intersex I have encountered have been in the LGB communities, not the wider population.

In 2006 South Africa, curiously the country with probably the highest incidence, was one of the very places to incorporate intersex persons into law as part of an anomaly that until then had meant if you were neither male nor female you were not a citizen. The European Union has for the first time in 2013 included LGBTI, not just LGBT, in policy documents. Several countries including Australia and New Zealand now recognise more than two gender possibilities on passports and official documents. I have been told by LGBT groups that adding the “I” will just “confuse people”, “aren’t there enough letters already?”. Sex, gender and sexuality are different yet overlap and we should recognise that. We should not have to proclaim “intersex persons are people too”!

Being, or having been, each of L,G,B,T,I & Q, gives me a peculiar insight to the almost territoriality of each “identity” and resistance to recognising similarity and intersectionality (sharing common cause with others even if the fight is different) of others. We were all babies, and as such we all experienced the effect of chromosomes, hormones and receptors in the womb, that created the individuals we were born as. That much we have in common.

I was misgendered at birth for a mere hour or so, had genital surgery at 5 for an apparently unrelated issue, suffered more than 6 years of intrusive and dehumanising paediatric investigations for atypical puberty development and as an adult continued to grapple with my gender and sexual identity which were further confused by ongoing underlying sex differences that meant I never felt fully a part of male, female, trans, or GLB identities and communities.

Being told, “don’t worry puberty will eventually happen” and “you’ll turn out normal in the end” by a 1980s male chauvinist doctor who treated me a lump of meat and patronised my intelligent concerned “little” mother was insulting and far from reassuring. I got the most insight and education from sex & body workshops in America and dating a sex therapist who put it nicely that I was “wired like a woman and plumbed like a man”, she didn’t mean just my neurology but all my physical pathways since I never could have typical sex like a “man” being mostly anorgasmic and only getting aroused rarely and in atypical ways. Hormones have mixed that up further! Gender clinics do not usually take well to intersexed or non-binary trans patients.

Not belonging and yet feeling pushed and shoved, sometimes literally, into one gender or another has been an exhausting journey and one I am still not at the end of, and may never yet arrive – at least at times I am beginning to enjoy the trip. What I hope for, campaign for, educate about, is an increased awareness of sex/gender variation and the increasing comfort of self and society with difference and diversity.

The first Intersex Awareness Day (IAD) came about when the American intersex group Hermaphrodites with Attitude (HWA) teamed up with American trans group Trans Menace (named after the lesbian women’s movement Lavender Menace in turn reclaiming former “red” and “yellow menace” US propaganda movements of the 1950s and 60s) to picket an American Association of Paediatrics (AAP) conference in Boston on 26th October 1996.

As with trans, intersex people have long resented and resisted the medical pathologisation that comes from the International Classification of Diseases (ICD) and the US DSM, now on version 5 which refers to intersex persons as having “Disorders of Sex Development” (DSD). Whilst this may sound like a logical description, the word “variation” rather than “disorder” would be less pejorative.

Intersex conditions may only be initially visible at birth for 1-in-2000 babies but can affect up to 4-in-100 people, often discovered later in life, at puberty, or whilst trying for a child, for example. Many may never even know. US Hospital Johns Hopkins psychologist and sex researcher John Money suggested that up to 4% of people are born with ambiguous genitalia whilst Professor of Biology and Gender Dr Anne Fausto-Sterling in Sexing the Body: Gender Politics and the Construction of Sexuality (2000) thought 1.7% a fairly accurate figure based upon combining the prevalence of differing conditions. Dr Sharon Preves, author of Intersex and Identity: The Contested Self (2003), says that “the frequency could be as high as 4%”.

What is intersex? It is being born with primary and/or secondary sexual characteristics that are not clearly or typically male or female, although may have characteristics of both. Complete hermaphroditism, an old disused and disparaged term (though being reclaimed by some), having the complete organs of both genders, is extremely rare but has occurred in recorded history for centuries. Medics, scientists, theologians and taxonomists have been noting and describing cases extensively since the 16th century. The use of the term “hermaphrodite” (stemming from Greek myth) as inappropriate has been raised since 1839 and yet in some quarters is still used.

GenderAgenda_symbol

There are some 80+ intersex variations covering physical organs, chromosomes, and hormone levels that can further result in atypical secondary development. Being male and female is not a simple case of X and Y, or rather XX and XY, cases of XXY or indeed XXXXY exist, not to mention XO or XXXX, and that is just a few of a more than a dozen chromosome differences, some of which have names such as Klinefelter or Turner syndrome. Androgen Insensitivity Syndrome (AIS) has several variations itself and as its name implies is based around atypical masculinisation and hormone development. Chimerism can see people with differing DNA at cellular levels, almost an internal twin at the simplest form of development.

We hear about intersex in the news mostly when athletes have their biological sex challenged. South African athlete Caster Semenya was literally dragged through the media whilst her sex/gender was investigated. Some radical feminists such as Germaine Greer never seem to “get” transwomen, similarly they are bulls in a china shop when discussing intersex, describing Semenya as “Big, blokish and bloody fast” with an “unfair biological advantage”.

After the London 2012 Olympics, in order to continue to compete “as women”, four athletes raised and thought to be typical women from birth but subsequently discovered to have XY chromosomes had surgery to remove internal testes. They were deemed to have a physical advantage from the increased testosterone in them. To all extents and purposes they were and are women, but with invisible to the naked eye XY chromosomes and an increased muscle mass. Yet, muscular XX women exist too. Perhaps in some sports we need more than 2 genders or body types, much as in competitions, like boxing, based upon competitor weight and stature.

The main fight of intersex activists is against early surgical interventions, the tendency for doctors and indeed some parents to want the child to resemble as near to one gender or “the other” as possible. In the past that meant making a lot of girls since surgeons used to inappropriately quip, “it is easier to make a hole than a pole”. The Organisation Intersex International (OII), founded in 2003 by and for intersex people, has as its mission “to attain human rights for intersex infants, children, and adults, particularly the right to bodily integrity and self-determination.”

Activists prefer a child to be allowed to grow up free from gender straitjacketing, shoe-horned into one or other, instead preferring free self determination via non-intervention, hormones and/or surgery as maturely requested. Worldwide, every year, 1000s are operated on to conform to binary gender “normality”.

“Many intersex people are perfectly happy with being men or women and more and more of us are quite happy being intergender and find the notion of trans totally foreign to our identity because we are rejecting binary sex and binary gender altogether and the prefix ‘trans’, just like the prefix ‘bi’‚ keeps the binary well intact.” (OII)

Gender and sex are far more than the feminists’ gender construct or the medics’ surgical one. Sex and gender are at work in us all on so many levels from cells to hormones, bodies to brains, appearance to identities. The ongoing studies of sex, gender and sexuality, continue to indicate that we are more than biological essentialism or societal construction. We all share a physical similarity, in that in the womb for the first 7 weeks we all look pretty much the same – then hormones hit us and depending upon chromosomes and hormone receptors we develop differently – but not only and exclusively into two sexes/genders as traditionally understood or defined. “All gender designation is ultimately sexism” (OII). We are ourselves, not male and female but fifty shades of male to female. A diversity to be celebrated.

Finally, a top ten of intersex falsehoods from OII USA (Organisation Intersex International):

1. Intersex means that a person has both sets of genitalia – False
2. 1 in 2000 infants is born intersex – False
3. When an intersex child is born, they cannot be left to grow up as is, but rather “something must be done” – False
4. Intersex is about homosexuality – False
5. Disorders of Sex Development, or DSD, is the preferred term for intersex – False
6. Intersex is not about gender – False
7. Intersex is part of the transgender movement – False*
8. The intersex movement is an identity movement like the LGBT movements – False**
9. Most intersex people were assigned female – False
10. Intersex is a “condition” which can be cured – False

OII’s definition of “intersex” is as follows:

“THE term intersex was adopted by science in the early 20th century and applied to human beings whose biological sex cannot be classified as clearly male or female. An intersex person may have the biological attributes of both sexes or lack some of the biological attributes considered necessary to be defined as one or the other sex. Intersex is always congenital and can originate from genetic, chromosomal or hormonal variations. Environmental influences such as endocrine disruptors can also play a role in some intersex differences. The term is not applicable to situations where individuals deliberately alter their own anatomical characteristics. Intersex people represent a significant percentage of the global population, from 1 in 1,500 to around 1.7%.”

People whose sexual characteristics, chromosomes, and/or hormones, differ from the majority, may or may not accept the label “intersex”, some prefer to reclaim hermaphrodite, some are ok with the current medical Disorder of Sexual Development, some may not see themselves as different at all, and be perfectly content with a minor variation that may not affect their life in any way. Community and activist movements attempts to organise and campaign will always fall foul to lumping discrete individuals together under one umbrella term that not everyone may be comfortable with and as a result there will oft be internal disagreements of labeling and language and even the outcomes campaigned for. The important thing, though, is mutual respect for the right to self-label and freedom of choice over any medical intervention or none. At the end of the day, whatever our birth, development, sex and/or gender, we are human after all – that much we have in common.

Notes:

* Although some would see trans as a part of intersex – at the neurological, possibly hormonal levels.

** Calling something an “identity movement” as opposed to “born that way” which covers us all has a similar stigma to straights or cisgenders calling any or all of LGBTQ a “lifestyle choice”. Furthermore we should not be judging each other on nature versus apparent “choice” either. Being an individual, freedom of expression, are “human” rights. Even a “lifestyle choice” is part informed by our nature and psychological/neurological makeup. “Fashion”, too, is part of self-expression and resides as much in the brain’s thinking as on the body (both externally as clothes and on the surface via tattoos, piercings and body modifications). People should not be judged for who they are however they came to be that way.

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7 comments on “Intersex Day of Awareness

  • Further to the discussions raised in response the German announcement this week that a third non-male/female gender is to be allowed legally there and an article about Lady Colin Campbell (http://www.telegraph.co.uk/health/10422505/Lady-Colin-Campbell-My-father-said-I-should-take-rat-poison.html) here are some additional figures on prevalence.

    “intersex is not always obvious at birth. Some are not even discovered, until autopsied. Some live their life without ever knowing.”,

    “According to a surgeon (Interview, 2006) the prevalence of the CAH-syndrome is 1 in 12,500, according to Professor Anna Wedell at Karolinska Hospital (http://www.medscinet.se/gensvar, undated) it’s 1 in 9,800 and according to the National Society Congenital Adrenal Hyperplasia (http://www.cah.se/), which holds that the prevalence of CAH differ from different places, estimates that in one specific Swedish province 1 child in every 8,000 is born with CAH. Other recently published studies gives the frequency of CAH alternately as 1 in 60,000 and 1 in 20,000 (Dreger, 1998, p. 40). In Alaska a certain Inuit group has a CAH prevalence of 1 in every 500.”

    Danielsson, M. Intersexuality – And its medical and social implications, 2005.

  • Hi, I picked up your comments on the Telegraph website about Lady Colin Campbell, and followed them to your blog here. I am absolutely fascinated by the concept of gender and will be following your blog in the future. Humanity is wonderful for its diversity, and in many respects the more individual the person, the greater the insight they have to share Thank you for your posts.

  • “Disorders of Sex Development, or DSD, is the preferred term for intersex – False”

    Ahh true actually! Intersex is old fashioned, inaccurate, imprecise terminology to formally describe people with Disorder of Sex Differentiation, with a new term Disorders of Sex Development. Rather simple really. How can someone possibly be described as ‘intersex’ when there is absolutely nothing inter about their sex?

    You manage to mention a few conditions I’m familiar with and refer to the condition as being the person. I am definitely not a disease, I do have a chromosome aneuploidy, which is XXY and you can check out my videos and see just not inter I am in my sex, my obviously male sex.

    https://vimeo.com/graemexxy

    • Graeme, the list of 10 falsehoods was from the Intersex community organisation OII USA. Many DSD/Intersex(ed) people differ in the language they prefer or disagree with. There are many supporters and opponents of OII across several countries. The majority that I know disagree with DSD terminology because of the pejorative pathologising “Disorder” terminology. The majority also reject the old terms of hermaphrodite and pseudo-hermaphrodite, yet there are a few seeking to reclaim the term. That is their right. My own intersex characteristics are very much endocrine development differences, I was misgendered at birth and spent 7 years under a paediatrician for delayed onset puberty and had minor genital surgery aged 5. I do feel inter-sex, hence my choice to also identify with and take HRT to transition more fully in one direction, though I know that won’t make me fully one sex/gender or the other still. I prefer the rebranding of DSD as “Differences of Sexual Development” or “Diverse Sexual Development”, just as in nature there are diverse differences that need not be called disorders. To pathologise as “Disorder” fuels the surgical motivation to “correct” and steer an outcome towards an acceptable or easiest binary sexed outcome. Language is always problematic and I apologise if my language comes across as describing the person as the “condition”, that is not my intention, but sometimes brevity and third-person formal reporting can depersonalise and accidentally appear to label people as their differences, disorders, conditions or whatever. I know many people whose DSD/intersex condition is more complex than my own, many for whom their bodies are entirely typical of male or female, yet their chromosomes appear to tell a different story. At the end of the day whatever label of sex and/or gender, medical condition/sex variation, etc the important thing is that we each have a personal story, right to self-identify and right to choose or reject medical intervention. I am a member of several intersex and trans support groups and the level of infighting over labeling and being called the “wrong kind of trans” or “not intersex enough” is astonishing. We get enough problems from the medical establishment and society for us to also be attacking each other. I hope celebration of individual variety can be the focus rather than conformity to a particular or preferred label, imposed or chosen.

      • Well, I’ve just basically given up on all this intersex stuff. Most of the people I know of who claim intersex are ordinary males and females living under a delusion. They’re the sort of people who dismiss all modern medicine in their words and accept modern medicine in their action toward themselves. Most of the people I know of who claim intersex have no right to claim it at all. In everyday life intersex never comes up, it’s a non event. And whether or not a person has a disease, disorder, condition or any other terminology, for themselves, is of no interest to anybody but the individual concerned. The most common conditions some describe as intersex can be seen on programmes like Embarrassing Bodies, and again the medical issue of concern is dealt with and intersex is not mentioned.

        When people have to lie about their medical condition, or lie about the effect of their therapy, or lie about how they were treated in their family growing up, I at least can see the folly of their argument. And if lying makes them happy, so be it.

      • Ahh it’s been ages since I was last on here, I was amazed I could remember my password!

        A couple of matters, there are a tiny number of people in the world with true intersex conditions, and they decided, with their advisors, to include every DSD they heard of as intersex, without even the slightest thought that others might not see things quite the same way they do.

        Recently there was the full “Intrersexions” documentary on TV here in New Zealand, by Grant LaHood, I’m sure you’ve heard of it, and there were men with Klinefelters’ syndrome referring to themselves as ‘intersex’ and they’re not intersex at all, they’re males, period.

        And if you listen carefully to the documentary the assertion made is that people born with genitalia so ambiguous it can’t be determined male or female is 1:2000 births, and they include these XXY males with KS as part of that statistic, and it is simply wrong.

        And ALL XX males are referred to as having KS too, and there was an XX male in that documentary. So under the umbrella of KS the majority of the participants in that documentary were in fact XXY males, who grew up male, who knew they were always male, and determined sometime later on that they were somehow intersex by their numbers of chromosomes.

        It’s just all so silly, that there are people who have no idea how the medical condition they have affects them, then go on to describe it in terms that just do not apply. In reality, everybody who has more than 1 X chromosome only has 1 X chromosome functioning in each cell. There is absolutely nothing more female about XXY males, or more male about XXY females. Oh yes XXY females do indeed exist.

        So people giving information about their medical conditions really ought to have all the facts, not as they say ‘cherry picked’ tid bits, that are not illuminating.

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