Back in 2006, I’d known Jim, Curtis, Gina, Andre & others through online groups for about five years, I met Sophie at a conference in the UK in 2003, and Tina in London around the same time. Back in those days, I’d met or knew a few other intersex people in the UK, including Del, Margaret, and others I have since lost touch with. I also met Miriam in 2003 at Ghent, when the establishment of the Intersex Committee at HBIGDA (as it was then) was protested. I’ve been around OII from soon after it began, but not at first directly involved. In 2006, I attended the first international meeting of intersex people in Paris with Vincent and others from OII France and Canada, there was a great sense of fraternity/sorority there. The talk I gave was delivered in French, with Curtis’ help in translation.
In 2005, when the DSD Conference was announced, Curtis contacted me and asked me to join OII, and with Sophie, contribute writing. I was in the middle of my PhD research, and despite the pleas of my supervisors, I decided to join and help OII. So, when news of the DSD Consensus statement hit in early 2006, we were well placed to launch a critique on both the introduction of the new terminology, its significance, as well as the consensus statement itself. Alongside this, there was a targeted prosaic and satirical assault on several people who at that time claimed responsibility for, and some who defended, the shift.
At that time, OII was the only intersex organisation I am aware of to come out and state a clear opposition to the DSD consensus in English, and to develop a coherent critique based on the content of the consensus statement, and the change in terminology. This began in reaction to a shift from intersex-led intersex activism to intersex activism staffed and funded by people outside the intersex community itself, particularly medical and parental interest groups; there was also a concern about the neglect of French-speakers in North America, as well as Spanish and English-speakers outside North America. We outlined what we believed to be the consequences of the move to DSD, and criticised the leadership of ISNA for their stance. ISNA itself was eventually dissolved, replaced by the Accord Alliance and Advocates for Informed Choice, one working with medical community to try and bring about change, and develop guidelines, and the other to pursue legal advocacy for the rights of intersex children.
Because of our rigid stance on DSD, people in OII at the time felt ostracised by much of the intersex community – many of whom seemed reluctant to openly criticise the DSD consensus. We seemed to be perceived by many as the enfant terrible of the movement. We focused not only on the terminology of disorder, but the whole fabric of what was agreed about the future of intersex treatment under the DSD Consensus. While we were the only intersex organisation I am aware of at that time to develop a consistent, rational, and coherent critique of DSD and all that it entailed in English, we were ignored; yet things discussed in our online discussion groups, or posted on our web site, somehow found their way into academic papers with little or no credit. The ostracism of OII was often at the level of character assassination, and we still have to deal with some of that legacy today, as mud sticks. (We were told we were ‘not really’ an intersex organisation at all, it was said that many of us were transsexuals ‘really’, or ‘queer’, or ‘gender-queer’, intersex wannabe’s, and so on, and that we were dividing the community by not going along with what had been agreed in a ‘consensus’ that none of us had signed up to or been consulted about. OII’s response to all this was at times robust and extreme. I still shudder when I think of the vicious satires that flowed from Sophie’s flat in Brighton, and the targeted denunciations from Curtis.
Much of what subsequently transpired became a huge distraction to the core work of OII – which was challenging DSD and what that entailed, and maintaining a critique of unconsented childhood medical interventions. Maybe people went too far. I know I tried (and succeeded at times) in getting some things toned down. But, there was a lot of anger over what had happened, and it served to re-awake past trauma in some. With hindsight, this was regrettable. I saw Sophie on my recent trip to the UK, as I did two years ago when I visited. Because of her health she can no longer be active, sadly, and I do miss her. She gave a lot to many people in this community, and still takes an interest, but has to avoid the stress that engagement with this community can bring.
I worked with others in OII from 2005 till I left the UK in 2010, working with people to help develop the core language, arguments and ideology that would help frame our resistance to DSD and highlight that move’s failings. I spoke at conferences about the shifts in terminology & guidelines, and I wrote about it for OII’s website, as well as doing my own research and presenting papers based on that work. I met people like Ken Zucker, Sarah Creighton, Phillip Ransley, Tom Mazur, Milton Diamond, Gerry Conway, Polly Carmichael, and others. Through the output of UCLH, both in paper and in what was said, it did seem that things might be changing, that like a parent who thinks hurting children will get them to behave can be weaned from smacking, surgeons were slowly being weaned from their need to make intersex genitals conform and behave.
Since moving to New Zealand with my partner, we have stayed with family, lived in two caravan parks, rented a damp house on the edge of a paddock in the middle of nowhere, and currently rent villa in the middle of a city, soon to move to a small rural section with orchard. I have done bits of LGBTI diversity training, failed to be awarded my PhD, and had to travel to the UK three times to deal with financial, property and family affairs. I have not connected with the intersex or LGBTI community at all here, apart from making a few such friends, and even Yann I have only seen once since arriving. I had a heart attack last year. Since arriving, I tried to disengage with intersex and activism, left OII for a year or so, but some people kept asking me to come back to it. People outside OII, and people within OII, seem to think I should still be doing more than I am, for some reason – but then when I do start to do something, or say things, people don’t always seem to like it. Like writing this piece, for example, which is odd, I can only say what I think, not what people want me to say.
So it goes…
Anyway, a recent conversation with Del led to me rooting around to try and find out what the team at UCLH meant when people say stuff like ‘things are changing’. I must admit to being quite shocked when I read the papers published by Creighton et al in 2010 & 2013, and the recent response to the UN rapporteur by a group of US endocrinologists, which I have recently commented upon. Reading between the lines, and sometimes not even having to dig that deep, it seems important to ask what has actually changed? It looks as though very little has actually changed. In fact, it may be that the situation had even deteriorated since the introduction of DSD. There is a saying in the Gospels that you know a good tree by its fruit, and if the fruit is rotten, then so is the tree, which should be cut down and burned. A parable that probably resonates with people with fruit trees. So, perhaps now it is time to appraise just where the process started in Chicago has got us, is the fruit good or bad?
Everything in these three papers and commentaries is about how the medical community wants to change – like a gambler, it knows it really should try to stop cutting up children’s genitals when they are too young to decide for themselves, but it just cannot help itself. So, what it has done, in an attempt to change and reform itself, is set up a system of guidelines about what would be nice if it could happen, and involved a few intersex people to help with that. These guidelines are a bit like the Pirate Code Barbarossa refers to in Pirates of the Caribbean:
Elizabeth: [runs after Barbossa] Wait! You have to take me to shore. According to the Code of the Order of the Brethren-
Barbossa: First, your return to shore was not part of our negotiations nor our agreement so I must do nothing. And secondly, you must be a pirate for the pirate’s code to apply and you’re not. And thirdly, the code is more what you’d call “guidelines” than actual rules. Welcome aboard the Black Pearl, Miss Turner.
In other words, however laudable, these guidelines only apply if those with power over intersex children decide to apply them, but there is no reason not to ignore them completely. Creighton alludes to this in her 2013 paper. Some carry on with business as usual, and some do pay lip-service to the guidelines, and in some individual cases that may make a difference (although there is no evidence). What is interesting, though, is that even among those who have seen the value of multi-disciplinary teams, the emphasis has not been about maintaining the child’s autonomy, but about having a committee which incorporates parents and psychologists to help justify reaching any decisions about intervention. One of the key features appears to be to try to avoid delays, to get the work done before the child can reach an age where they could reasonably be expected to be consulted! This is emphasised in the statement by endocrinologists, where what we have come to regard as purely cosmetic is justified on ‘functional’ and ‘psycho-social’ grounds. It is just as important today for these people that surgery is carried out before the child is conscious of the fact as it was 50 years ago under John Money.
It is time intersex people who have been toiling away, tacitly or explicitly supporting the whole shift involved with DSD, woke up and realised they have been ‘sold a pup’ (a swindle, where one was sold a bag supposed to contain a piglet, but which actually contained a puppy). The significance of Creighton’s findings, while not conclusive nor exhaustive, seem to point not to the DSD consensus and guidelines bringing about any significant change in relation to children’s autonomy and genital/gonadal integrity – in fact, quite the opposite! Certain surgeries for ‘girls’ appear to be on the increase, and surgery on ‘boys’ do not even feature (these continue as beyond question in this framework). Just as Curtis, Sophie, myself and others said it would, way back in 2006, this whole move associated with the shift to DSD may even have made matters worse! Not only made matters worse, it split the intersex community in a way that is only now starting to heal. We did not do that, OII did not do that, those who brought in DSD did that. OII, amongst others, has kept the vision alive, the ideal of genital integrity and autonomy, and kept it going, at a time when some others gave up, feeling exhausted, and others tried to pursue dialog with those who had divided the community.
The signs are clear, intersex people cannot rely on those who treat intersex children to change their bad habits, and much as it would be nice to work with the medical community to bring about change, little has happened that is of any demonstrable benefit to those children today who, like many of us earlier, experience unnecessary genital surgeries as children because of adults dis-ease with their nonconforming genitals and gonads. In the same way that OII Australia, OII Europe, AIC Legal and others are now doing, we have to find ways of challenging these abusive practices through the application of law, bringing about protection under the law, and insisting that international conventions designed to safeguard the rights of children are upheld.
The time has come to abandon the tree that bore such poor fruit – and be grafted as part of a worldwide movement of intersex people, for intersex people. Not compromising on the bottom line of genital autonomy and integrity for every intersex child. That involves a frank review of whether the move to DSD and all that entailed has benefited intersex chidden, acknowledging that it is the intersex person’s fundamental human right to have a say in how their own genitals/gonads should be, and that neither surgeons, endocrinologists, psychologists, social workers, committees, or even parents have any right to dictate how intersex children should look, nor to frame their entire sexual future according what they have decided for them.
Since I joined OII, people have come and gone, and now people like Morgan, Hida, Ins, Del and others joined or returned, becoming strong voices within OII, because they maintain the vision with which we started. (Sometimes we can lose that vision, so new blood is important to remind us of this)*
As an organisation about intersex people, OII has never required ‘proof’ of intersex status, because we do not believe it is something a physician determines, it is not down to some diagnosis alone, nor having experienced certain medical procedures. It is about whether one was born a certain way. We have chosen not to judge who is or is not ‘really’ intersex, as none of us in a position to define somebody else; that is not what is important, and it can be divisive. People who themselves experienced these kinds of medical interventions in childhood need to stand up and speak out, because this is a strong testimony to give. There is a lot to do, and over the past ten years we have mostly done all that we do without funding from external organisations, medical trusts, LGBTI organisations, donations or subscriptions, and have funded this project ourselves, striving to remain an independent international intersex organisation run by intersex people for intersex people. OII has come a long way from the early days – but we still have a long way to go. We are not alone now, we have a network of alliances with people like ILGA, Genital Autonomy, as well as other intersex groups and activists, and try to focus on putting an end to unwarranted, unwanted, un-consented (and still to a large part experimental and un-evidenced) and unnecessary medical interventions in childhood, and to end these completely and forever.
Childhood surgery for ambiguous genitalia: glimpses of practice changes or more of the same?
Sarah M. Creighton, Lina Michala, Imran Mushtaq & Michal Yaron
Psychology & Sexuality, 22 Oct 2013.
Holistic management of DSD.
Caroline E. Brain, Sarah M. Creighton, Imran Mushtaq, Polly A. Carmichael, Angela Barnicoat, John W. Honour, Victor Larcher, John C. Achermann.
Best Practice & Research Clinical Endocrinology & Metabolism, Volume 24, Issue 2, April 2010, Pages 335–354
* excuse my Anglophone/Eurocentric bias here, I am most familiar with this work, but must acknowledge the work of people like Dan, Janik, Hiker, Julius, Mauro, Sally and many others as well, both within and outside OII around the world.