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Back You are here: Home Sex, Gender & Sexuality Diversity - [Archived] ISGD What is intersex and how does it fit into ISGD?

What is intersex and how does it fit into ISGD?

The use of a new umbrella term: intersex, sex and/or gender diverse (ISGD) to bring together people with diverse sex and/or gender identities or variations to campaign for civil rights has caused some controversy. Two Australian intersex ISGD campaigners, Tracie O’Keefe and Ind! Edwards, discuss the issues.

31 May 2011

Intersex, sex and/or gender diverse (ISGD) people includes people who are intersex, transexed, transsexual, transgendered, cross-dressers, androgynous, without sex and/or gender identity or people with culturally specific sex and/or gender differences. No one person can be ISGD – it is a phrase to describe a collective of groups of people.

There are so many shades of grey of intersex manifestations physically that may not be recognised as distinct intersex medical conditions but do cause intersex features. For some people it starts with unusual genetic combinations at the time of conception like Klinefelter’s Syndrome 47 XXY where people may have two XXs and a Y chromosome.

Interestingly in this manifestation people may go through their whole lives and not know they have Klinefelter’s. Some people discover it when they grow tall and spindly and then most are infertile. Some people who are Klinefelter’s may transition to their opposite natal-registered sex, so they are both trans and intersex.

Tracie O’Keefe (TOK): So what does ISGD mean to you then Ind!?

Ind! Edwards (IE). I think what we are proposing is that we create a space for all intersex, sex and/or gender diverse people with that sole slight change in definition that encompasses the needs of the entire ISGD community, including the ones that fall through the gaps and live in the grey areas.

Other intersex manifestations cause physical changes in children as they are growing in the womb such as Congenital Adrenal Hyperplasia (CAH) where the adrenal gland cannot produce the hormone cortisol so it over produces sex hormones. This can cause masculinisation of some females who are born with atypical genitals such as a large clitoris. Surgeons often want to reduce the clitoris to make these children look stereotypically female but it can damage the sensitivity of those sexual organs. Like all intersex manifestations it is impossible to mention all the variations here because there are so many subsets of each type.

TOK: Combined campaigning power could work well since all intersex, sex and/or gender diverse people are fighting against over-pathologisation in the Western world. My experience with Sex and Gender Education (SAGE), the Australian lobby group for ISGD people, over the past 10 years is that most of us get on well, no matter what we are. What do you think?

IE: The ISGD community is more concerned with creating a safe co-operative, non-hierarchal platform for people who indentify from any of the ISGD groups.

Dawn Langley-Simmons writes that she was assigned as and brought up as a male due to ambiguous genitalia, transitioned to female, had surgery and gave birth to her daughter. The photographer Del LaGrace Volcano lived for many years as female and was a well-known lesbian photographer before transitioning to live both as male and female at the same time. Rather than being a victim to a medical diagnosis he describes himself as an “intentional mutation and intersex by design”.

TOK: But so many people are so afraid of not being heard that it spooks them; they lash out and then retreat into their comfort zones. The thought of trusting in a large collective process of an ISGD collective scares them.

IE: (laughs)... If anybody can give me anything close to including all of us I will take it. I want to be an individual and respect other people’s individuality and choices but I want to be with people who have my back as an intersex person and as a trans person without forcing me to choose. There seems to be a competition in some intersex circles as to who is the ‘most intersex’ and who has lived a ‘real’ intersex life and unless you are prepared to publicly state your diagnosis you should ‘get out of intersex activism’. I find this silencing and oppressive to me as an intersex person.

Other people develop intersex manifestations during their lifetimes due to organ failure or over activity such as rocket scientist and university lecturer Zoe Brain, who appeared male well into adult life and fathered a child, then in 2005 began to feminise naturally. Illnesses such as cancer or adrenal problems can cause females to masculinise just as testicular cancer treated with oestrogens can cause males to feminise at any times of their life, causing intersex manifestations.

There are so many shades of grey of intersex manifestations physically that may not be recognised as distinct intersex medical conditions but do cause intersex features. Some of these manifestation may be the effect of drugs or environmental toxins.

TOK: So be honest, do you think intersex issues can be well serviced in an ISGD movement?

IE: I think that people should have a choice. I am very pro-choice. If they want to identify with the GLBTIQ community that is OK or  the ISGD community, that is OK too. But by people not engaging in civil community dialogue it’s hard to find a solution to the problem of differences I did not know we were having

As a result of the Kevin case (which granted a trans man the right to marry in his realigned gender), Australian common law says: “Transsexualism is a biologically derived intersexual condition and should be treated as such at law” and that “After sex affirmation surgery, a person with transsexualism or other intersexual condition is of their affirmed sex under common law and entitled to legally marry in that sex.”

TOK: What do you think those of us who are not using solely our intersex physiology as a bagde of membership are doing?

IE: I think that there are different groups of intersex people. Varations ... I think the ISGD movement goes beyond the physiological and medical framework we have around intersex people  and we need to concentrate on people having a safe place to be visible and a platform to speak without fear of reprisal and dissosciation.

As for the medical framework we also believe there are immense changes needed in respect to non-neccesary medical and sugical interventions on infant intersex children as a tool to create a so-called stability within the sex and gender binary

Most intersex people live as one sex, identify as heterosexual, even though they may have genetic, genital, hormonal and physiological variations. For some of those people being intersex does not impact overtly on their health but for others it has ramification that means they need medical assistance intermittently or lifelong. There are hundreds of intersex manifestations, many of which we do not yet medically understood.

TOK: What do you think to the idea that the ISGD movement is seeking to destroy the intersex movement or compete with it? Just recently Organisation Intersex International (OII) Australia accused me, you, Still Fierce Sydney (ISGD collective) and anyone or organisation who has anything to do with ISGD as appropriating intersex.Personally I think it is an unfortunate misunderstanding of the situation by OII. Sex and Gender Education (Australia), the civil rights campaigning group I am part of, has been fighting for intersex, sex and/or gender diverse people in Australia for 10 years and OII Australia has only existed for maybe three years - although I certainly acknowledge the excellent and hard work OII has done on behalf of intersex people. I personally have been holding my hand out to other intersex, trans and other sex and/or gender diverse people for 40 years both personally and professionally as a sexologist. OII are asking people not use the term ISGD.

IE: Wow! It’s almost an instant mythology. No way could I imagine that anyone could have a reason to start  a movement that seeks to destroy another movement.

How can I appropriate what I am?

When I worked at the Gender Centre in  Sydney we helped many intersex, sex and/or gender diverse poepIe long before there was an OII. As an intersex person, I want the I in ISGD. Besides, OII were invited to speak at the first ISGD rally but they refused. The door of course is always open to them to sit down with us and talk.

We are lucky to live in a democracy where we have the right to include people through free choice. We live in a nation where technically we do have a right to define ourselve; it’s not perfect, but with the ISGD movement we are seeking to make spaces for all ISGD groups of people. I actually was attracted to Still Fierce because they had the I in the ISGD. They are people who include and don’t tell people what they must be or must not be. Yippee! At last! People with vision.

Many intersex people have horrific stories about the way they were and are treated by the health professions, families, and the public and many of us as campaigners have campaigned for many years for changes. There has been a feeling of betrayal for many intersex people by the Intersex Society of North America (ISNA) for their part in the introduction of the term Disorders of Sexual Development (DSD), which seeks to pathologise many intersex people who believe they do not have a pathology.

Some intersex people are happy being intersex and do not identify as strictly male or female, while others do want to differentiate themselves as either male or female.

TOK: You have recently shifted your identity from an intersex trans woman to intersex genderqueer. Why?

IE: I think I’m on journey and part of that journey is finding spaces were I can just be me. In an ISGD place I just don’t have to explain myself because we are all different and that that is not only OK but it is celebrated. My gender is diverse as well as me being intersex. I don’t want to do heteronormative and I need spaces where I don’t have to do heteronormative if I don’t want to.

The central political concept in intersex campaigning is for the civil right to self -determination in that it is the person themselves who should decide what sex and gender role would most suit them. Also it is for the person themselves to determine their own sex not have their bodies policed by the medical profession and society, or to undergo medical treatment they have not sanctioned that may change their bodies.

TOK: I just wonder what intersex people who are so sure that we are not one of them are so afraid of? We are, after all, not seeking to disempower intersex organisations but simply to pool power and commonailites.

IE: I don’t  know if it  is an intersex thing. I don’t ask people for their papers. If that is the sort of world we are living then it is like a Stasi regime and could not be a precursor to any self-identification culture.

Many people who are intersex see the GLBTIQ alphabet soup making them into second cousins of the third person on the left whose name no one can remember. The gay movement has been successful in getting funding for GLB issues, but ISGD people end up with very little. GLBTI funding invariably leads to increased numbers of GLB people in organisations but little of the money goes to ISGD people themselves.

The myths that GLB people understand or respect us as intersex people more than other people does not hold water. Most gay people know absolutely nothing about being intersex or any other kinds of sex and/or gender diversity.

TOK: I would love for all of us to sit around a table and simply talk civilly about self-identification with other intersex people and focue on our sameness not our differences. How do you think we might do that?

IE: I think it is up to other communities and organisations to respond to our invitations to do just that, and we can all sit around a table and talk about it so we can discuss becoming a stronger community.

Let’s face it, the governments have not done any favours for the ISGD communities Australia lately so the inclusiveness can only give us more power. We believe separatism and divisionism is an old technique that no longer works.

Since this separatism can never work, ISGD was created to be inclusive of people who are disenfranchised as well because of their sex and/or gender differences. Under this banner I feel included and in a safe space so as to be heard without the fear of being ostracised. We have all been through much and the one thing we have going for us is that we can find strength in numbers and fill in all the gaps neglected in welfare and law provision and raise the standards of living for all ISGD people.

I strongly believe that this movement is here to stay and in a way I’ve taken a slight step back and I want the younger generation who started it from nothing to lead this movement into the future with co-operation from allied communities. In this way we can all help each other.

The ISGD community is a new solution to old problems and we always welcome constructive dialogue.

As Gandhi said, “Be the change you want to see in the world.”

See also: Historic rally hears stories of violence and discrimination from ISGD people

Dr Tracie O’Keefe ND, DCH is a sexologist practising at the Australian Health and Education Centre in Sydney, Australia. She is the author and/or editor of several books on sex and gender diversity, the latest being Trans People in Love.

Ind! Edwards is intersexed but her experience was the experience of a trans woman so it’s hard for her to find a place where she neatly fits. She identifies as queer in that she is pansexual. Her intersexed condition wasn't properly diagnosed until she was 21 and she spent many years in isolation trying to understand why this happened to her. She has worked in welfare, and always been an activist in one sense or another.

She entered Intersex, Sex and/or Gender Diverse (ISGD) politics recently as it feels like the right time to unify and be standing up and demanding equality, reclaiming our bodies and putting a stop to non-consensual medical intervention on infants, and campaigning for the right to marry and raise families.

She manages two trans/intersex/genderqueer Facebook groups: 3RD and Trans Menace Australia.

 

 

 

 

 

 

 

 

 

 

Comments   

0 #13 Graeme 2011-06-19 18:00
There seems to be a lot of confusion here in these replies as to what intersex is, and since it was the ISNA that first used the word to describe people born with ambiguous genitalia I'll use the ISNA as my source. Here http://www.isna.org/faq/what_is_intersex we can read: "Intersex” is a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male. For example, a person might be born appearing to be female on the outside, but having mostly male-typical anatomy on the inside. Or a person may be born with genitals that seem to be in-between the usual male and female types—for example, a girl may be born with a noticeably large clitoris, or lacking a vaginal opening, or a boy may be born with a notably small penis, or with a scrotum that is divided so that it has formed more like labia. Or a person may be born with mosaic genetics, so that some of her cells have XX chromosomes and some of them have XY." And later they go on to say: "Rather than trying to play a semantic game that never ends, we at ISNA take a pragmatic approach to the question of who counts as intersex. We work to build a world free of shame, secrecy, and unwanted genital surgeries for anyone born with what someone believes to be non-standard sexual anatomy."

I can assure everybody that XXY boys are born with standard male anatomy, as you would normally expect to see standard male anatomy. I can also assure you that most XXY males are never diagnosed, that is they have nothing about them that distinguishes them from any other boys, for most of their lives. If you'd like to read: http://www.nichd.nih.gov/publications/pubs/klinefelter.cfm which is pretty good lay person information, not in depth, not scientific, but a good overall picture, you will read "Because they often don't appear any different from anyone else, many XXY males probably never learn of their extra chromosome. However, if they are to be diagnosed, chances are greatest at one of the following times in life: before or shortly after birth, early childhood, adolescence, and in adulthood (as a result of testing for infertility)."

And the ISNA included wrongly Klinefelter's syndrome as a supposed "intersex" condition because one of their volunteers had Klinefelter's syndrome and he claimed he was forced to take testosterone without informed consent. Even if that were true how does taking hormone therapy make a person intersex when most men who take testosterone do so because of hypogonadism or as it's often referred to now as 'andropause?'
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0 #12 Graeme 2011-06-18 09:44
I am XXY, I am treated for Klinefelter's syndrome, and I am not intersex. My sex is male, I have always been male. All XXY males are male, none are intersex. It's just the lack of education in genetics most people have. The chromosomes themselves have no masculine or feminine characteristic. The additional X is inactivated and only a few genes on the pseudo-autosoma l region actually function, and if those who pretend XXY's are intersex could be bothered to read information from the Human Genome Project, they'd discover those activated genes on the inactivated X have nothing to do with sex or gender. It is purely "folklore genetics" that grossly uneducated people use to infer that XXY is an intersex condition. And just because some of those grossly uneducated persons happen to be XXY men themselves is irrelevant. OII, wherever it is based, has no right at all to include men suffering hypogonadism, which any man can get, as being intersex. Intersex is about ambiguous genitalia at birth, only those people are intersex and nobody else is.
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0 #11 Ind! Edwards 2011-06-02 00:56
https://www.facebook.com/home.php?sk=group_152046034866057&ap=1

A new ISGD Volunteer Advocacy Group...
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0 #10 Ind! Edwards 2011-06-01 01:41
Louise van Hine

I am intersexed, so I don't understand your problem. The more you people jump up and down the more people like me are going to dig our heels in.

If Oii wants to discuss it then we a still waiting for this dialog if Oii wont come to the table then leave us alone to do what we feel we need to do. Stop being so authoritarian, come to the table and discuss it otherwise we have no beef.

Its a simple and plain fact of democracy, this has gone beyond thunderdome because Oii (whoever they are) wouldn't engage with us in the first place.

Really the beef here seems to be with Tracie and Gina and has very little to do with the rest of us. You had plenty of opportunity and but chose to play ignorant and elitist.

Oii is behaving like a schoolyard bully.

NO DEAL
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0 #9 Louise van Hine 2011-05-31 20:32
My 'fixation' actually is the level of apparent scaremongering in your self-interviewe d article above. I am not Australian, nor am I - as you might suspect, a member of OII, but I do know members of OII, and not a one of them has expressed any interest or support for your new umbrella which does exactly nothing for intersex persons, either in Australia or elsewhere. What I am most 'fixated' about - is that a diagnosis ya think? is the portrayal of CAH treatment in Australia - I just dropped in on the CAH support organization of Australia and amazingly enough, their basic information page mentions cortisol replacement and the necessity for early diagnosis but not a single word about clitorectomy. So I'm curious as to why you decided this was an important general information article to put about on 'how intersex fits into "ISGD." Because, as an adult with CAH, whose 'fixation' is the elimination of infant genital normalization surgery in the United States (my home) and the appropriate diagnosis and treatment of untreated CAH sufferers, I don't see any value in your new umbrella. so if you could address something other than the many misspellings and grammatical problems with your public statements, maybe you could address just what the status is of genital mutilation of CAH infants in Australia, because now you've got me worried. Because THAT'S WHAT INTERSEX PEOPLE CARE ABOUT. Not providing convenient legal cover for transsexuals getting their birth certificates changed.
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0 #8 Ind! Edwards 2011-05-31 19:56
the intersex folk "I know" have been very supportive of this movement. I guess it depends on what circles you move it. All very subjective really. Your fixation on Tracie's spelling/typo's suggests you have very little relevant information to share in regards to this article. I assume you are making assumptions.
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0 #7 Louise van Hine 2011-05-31 19:31
Tracie:

you wrote:
"The Gender Centre was set up in Sydney to help trans and intersex people not gay people. The needs criteria from the majority of people from the ISGD groups is very different from gay people even though a minority may be gay. "

So since when does this 'international' new 'inclusive' designation hew to the treatment groups of the Sydney Gender Centre? How is that relevant to anything whatsoever?

And right at the base of the objection of every intersex person I know who has discussed your great new inclusivity paradigm is that the needs critiera of INTERSEX persons is very different from that of the transsexual and transgender groups - up to and including diagnosis, treatment, and support! This despite the fact that a minority of trans may be intersex. Correcting or ameliorating nonconsensual infant surgery by doctors following the misbegotten guidelines of John Money doesn't put intersex persons who choose sex reassignment under your new new transexual umbrella. And they must not teach spelling in your university's doctoral program, the word is "anomalies."
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0 #6 tracie okeefe 2011-05-31 18:53
Hey Bob & Angela
Intersex does not just refer to people with genital anomylies. Legally intersex does not just refer to people who have genital anomilies. Please reread the article because there was no statement about people affected by Klienfelter's having male and female parts. There is a level of hormonal problems and hypogonadalism with many with Klienfelter's that can lead to some people being not sterotypically male. I am not suporting concepts or sterotypical males but saying that for some people that is distressing.
The Gender Centre was set up in Sydney to help trans and intersex people not gay people. The needs criteria from the majority of people from the ISGD groups is very different from gay people even though a minority may be gay. :-)
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0 #5 Louise van Hine 2011-05-31 18:50
Maybe Tracie is going for some grant money in order to prove that everybody on the planet is really brain-intersexe d! But I have to wonder if the Organisation Intersex International (Australian chapter and international organisation) don't recognize Tracie's great new acronym then how much is she really interested in intersex concerns? Wouldn't she want to make sure she got some buy-in from the organizations that are made up of intersex people? Also, I find it rather bizarre, (as a patient with CAH) to see an article in 2011 saying that surgeons routinely perform (or desire to perform) clitorectomy on XX-CAH infants, when that practice went out of favor among American surgeons 40 years ago. Infant genital normalization surgeries are scary enough without making misrepresentati ons of that kind - unless someone in Australia can speak to this and say that they really still do cut off infants' clitorises down under. I remain skeptical. My most important goal - as a plain old "I" - intersex only - person is to make infant normalization surgery a thing of the past. But is that what Tracie wants?
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0 #4 Ind! Edwards 2011-05-31 18:32
actually you are quite incorrect, we invited oii to the table several times. Oii will do whatever Oii wants to do and thats OK. We are looking to start a movement yes and its about inclusion, visibility and getting things done. Oii has absolutely no place dictating to people how to identify. As for taking the T out of GLB, its long over due. The T community have suffered tokenism and the funding funnel for way too long. Its also about T people doing it for themselves. People are frightened of change and I understand this. This is why we are in for the long haul. Oii likes to pathologise everything and seek evidence from individuals of their intersexuality however this behaviour is akin to a Nazi regime. Gina Wilson (chair of Oii) very openly in a public forum asked me to show her my medical papers and to stop representing myself as intersexed. You don't own intersexed, no one does. We dont claim to own ISGD either. WOW people this is the head of an (private company?) organisation trying to shut down a grass roots collective. Again we live in a democracy and unfortunately for Oii and Gina Oii Wilson (Labor candidate) we have every right to do what we are doing and will continue to move forward with or without Oii.

I refused to bow down to Oii's relentless bullying and misplaced sense of authority. 8)
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