dAISy Sept 2000

Welcome to the new September 2000 edition of dAISy – our AIS Support Group Australia newsletter.

It has been a busy year for the AIS Support Group Australia and me personally. I am very proud of all that we have achieved, and we are now are reaching (and supporting) an increased number of people with AIS and other Intersex conditions.

We held a seminar in July at the RCH, which was well attended by members of our group, specialists, students, and researchers from the RCH, and two prominent Psychiatrists from the gender programme at Monash. Linda Ann Watson, a member of our group who not only has AIS, but also is Milton Diamond’s research associate, presented this seminar. I am very grateful to her for coming to Australia and presenting her talks. (Her gender identity talk is posted on our new website.)

Speaking of websites, I have created our site with the input of several members and friends with AIS not only from Australia but the US and UK also. The url is http://www.vicnet.net.au/~aissg/ . We already have several personal stories, and would welcome others. The use of pseudonyms is an alternative for those who feel uncomfortable in displaying their names. We have other sections in development, and would welcome the help of any members of our group or staff of the RCH.

Some people (with AIS) living in the US and UK have requested to join our group in the light of our increased presence in the AIS/intersex community and the level of support we have been able to provide. I would especially like to welcome Graham and Tony to our support group and for their contributions to our “AIS Men” group. Their personal stories are included on our site.

We also have State Representatives for all States of Australia! Phoebe is the Queensland Representative, Sarndra the NSW Representative, and Kylie the Victoria Representative. I thank you all for your commitment and interest in supporting others with AIS and am very glad you decided to take on a more active role.

Personally, I am pleased with the overall response from the 60 Minutes programme. I was contacted by many people after its screening including parents of children with AIS and other intersex conditions (even preventing a surgery in one case), other intersex people that have never met or heard of any other intersex people, politicians, media groups, intersex and transgender groups, solicitors, etc. It was very unfortunate that Garry Warne – one of the doctors who have helped many people with intersex conditions and their families – was portrayed in such a negative light. There are many doctors who are still not advocating disclosure, and Garry has been a supporter of this for many years. Garry has also been driving force in our support group since its inception. In order to support Garry and the work of people like Julian Savulescu, I produced a Media Release (with Andie) and also went on Radio supporting the work Garry has done in the areas of disclosure and peer support. I know we still have a way to go, but at least the RCH are willing to discuss these issues with us.

For a good synopsis of the entire events of the 60 Minutes Programme, please read Andie’s article.

This leads me to the Bioethics study the RCH is conducting. I am very excited by this and hope as many people as possible will help the RCH in this research. Many thanks to Andrew Sinclair, Garry Warne and Julian Savulescu for their continuing efforts.

I hope you enjoyed reading the April issue of “daisy” and invite everyone to participate in our future publications by either submitting articles or helping with the formatting.

I am looking forward to the November meeting and hope to meet many of you there.

"The greatest mistake you can make in life is to be continually fearing you will make one."

- Elbert Hubbard, 1856-1915

I hope that people were pleased with the format and content of our April newsletter which Antoinette managed to send out to members in a very short time. I am very much indebted to her for her computer skills, energy and enthusiasm in the carrying out of her Secretary/Treasurer duties. Without her the group would be at a standstill, and it is exciting to feel the momentum of the AISSGA moving forward again so speedily. Unfortunately, soon after the newsletter was distributed, I received a phone call to say that my only sister had died in England, so within 24 hours I had left Australia to arrange and finalise her affairs, and was away four weeks. There was plenty of heartache in all this and I will try to write a separate article about Helen after some more reflection.

Congratulations to all who wrote articles for the newsletter and I hope we shall have more contributing for the September issue. I was much taken by Phoebe’s attitude to AIS, see the positive aspects of our condition instead of dwelling on the downsides, and her article on osteoporosis makes us realise how much there is to know about the prevention of low bone density. We need to be up to date with any new developments in this field.

No doubt there will be many responses to the 60 Minutes programme which went to air on June 30^th. This was a follow up to the report on the David Reimer case which was on Channel 9 a few weeks previously, and gave Antoinette the urge to talk about herself and others who feel they have gender identity issues. This was a very brave venture and it is to be hoped that there will be positive outcomes to it all. I’m sure that there were many who felt unhappy about the content and the balance of the programme. No doubt others will give their views on that. Antoinette is to be congratulated on the way she presented the topic and then followed it up by broadcasting on 3AW. I am full of admiration and wish I could be as open about myself.

I have just received the current “ALIAS” newsletter and again it is full of interest. There is complete silence in the house as I digest every word! For anyone in Australia who feels isolated, both “ALIAS” and our newsletter (no name as yet) are a way of keeping up to date and more importantly being linked with others throughout the world who share our concerns. I continue to share the grief and pain that emerges from the letters that people write, and know that throughout the world many are still kept in ignorance of their condition and left to cope on their own. We need to constantly remind ourselves that our goal is to dispel the fear and secrecy that surrounds our condition by sharing our knowledge with those who feel they have no one to turn to.

Now you might be wondering who Elizabeth might be! I have taken to using my second name for matters to do with AIS which is an interesting experience especially when answering the phone! Which reminds me to say that I am happy to chat with anyone at any time – well not quite anytime!

“Women are like tea bags; put them in hot water and they get stronger.”

- Eleanor Roosevelt

The recent airing of Antoinette’s story on Channel Nine’s 60 Minutes has created a considerable amount of interest and controversy, both from within the AIS Support Group worldwide and the general public. Any current programme dealing with the subject of intersex births is bound to touch on the controversy surrounding the surgical reinforcement of gender assignment for those children where a decision has to be made as to sex of rearing. Comparatively recent concerns being voiced about such surgical reinforcement by some members of the medical profession, adults with intersex conditions and the parents of children with intersex conditions, have become a source of much media and public debate. Since our last newsletter and both before and since Antoinette’s story went to air, there have a number of articles and television programmes dealing with the subject of intersex conditions and the surgical procedures associated with such conditions.

As someone who spent much time with Antoinette while she was deciding if she should take part in the programme, as well as being present for the entire day the story was being filmed and her interview, I feel I should give some account of the circumstances surrounding the lead up to the programme, it’s airing and subsequent events.

When I first heard that 60 Minutes were interested in producing and screening a story about the surgical reinforcement of gender assignment of children with intersex conditions, more specifically Antoinette’s life experiences to date, I was not very keen on the idea. My own feeling was that the earlier 60 Minutes programme about David Reimer, whilst covering his experiences and those of his family in a reasonable manner, had ventured out of their depth when comparing David’s case with those in the intersex community. There were many generalisations made during that programme to reinforce David’s story, that had the potential to harm or upset members of the intersex community. Indeed this proved to be the case as I received telephone calls from parents in the AIS support group here in Australia, concerned about statistical quotes made in the programme suggesting that those with XY intersex conditions would later realise they were “really” male if assigned as female from birth. As is often the case with statistical information, that led in the programme related to a condition very different to AIS, but which tended to support the XY equals male argument put forward by 60 Minutes. It would have been a simple inclusion to name the condition in the programme; however, this was not done and for me led to questions about the motive of any future 60 Minutes programme dealing with the issue of intersex conditions.

I discussed my concerns about the programme with Antoinette. I was particularly concerned that this would end up being another XY equals male programme, something the AIS community certainly did not need. I was also concerned that 60 Minutes had not interviewed or even mentioned Milton Diamond in their programme about David Reimer. Milton Diamond was not only the person responsible for exposing the failure of the David Reimer case, but has also been vocal in the medical community for many years speaking against the surgical reinforcement of gender assignment of infants with intersex conditions. I felt it only fair that he be interviewed. At one point during my discussions with Antoinette, I talked with 60 Minutes producer, Julian Cress, about my concerns and the problems the David Reimer programme had caused. I was still not convinced by his answers. In the end though, this was always going to be Antoinette’s story and it ultimately had to be her decision to do the programme or not. In the end she decided to do the story with the following provisos, firstly that she would not mention the support group during her interview as she did not want her personal story to be representative of others in the AIS support group or the AIS community, secondly that the donation offered to the AIS support group by 60 Minutes to do the story not be accepted, as it was felt to be inappropriate in the circumstances.

Antoinette’s part in the programme was to be filmed on the Monday of the Queen’s birthday long weekend. Shorona arrived in Melbourne a few days before the weekend’s events and was present for much of that which went on, including a good deal of soul searching by Antoinette. Antoinette’s main concerns were that she keep everyone’s interests at heart during her interview by Jeff McMullen, the stress of this later proving to be one of the biggest issues for her during the whole experience.

The 60 Minutes crew arrived at Antoinette’s place about 9am on the Monday morning and were met by an AIS support group crew of Antoinette, Shorona and me, as well as some uncharacteristically foggy weather. I have to say I was initially caught off guard by the amount of knowledge Jeff McMullen displayed about the subject of infant surgeries and intersex conditions in general. We spent an hour or so just chatting about many of the issues, with all of us having a say about our own experiences and expressing our own opinions. Chris Somers, who is 47XXY and who has been actively involved in speaking out for the intersex community for some time, was also present for the events of the day.

After the “get to know everyone” session, we all headed to Altona pier where the initial sequence of Antoinette walking along the pier was filmed, the foggy weather lending just the right touch to the effect of someone lifting the veil of secrecy we have all experienced in some way. Shorona and I continued our discussions with Jeff McMullen behind the scenes while this was going on. From there it was back to Antoinette’s house and an interview with Antoinette and her sister Catherine. Once again in convoy, we travelled to Melbourne City, where more filming took place with one of the Melbourne Festival of Arts street performers at Southbank (coincidentally the scene of last year’s November support group meeting late night dinner). All of the easier parts of the day finished, we then went to a suite at the Crown Towers, where Antoinette was interviewed at length. It was here that the pressure was really to be brought to bear on Antoinette. All day there had been repeated discussions reinforcing the good work that Garry Warne and his colleagues at RCH had been involved in and the pressures faced by the parents of children with intersex conditions. Now Antoinette was in the position of having to tell her personal story, without recriminations and whilst considering the needs of others in the support group, especially parents and women with AIS. Obvious not only during the interview process, but also in the final cut of the interview, is the considered way in which Antoinette answered those questions put to her. Not seen, were those questions she refused to answer because she felt that to do so would damage the reputation of RCH or hurt others in the support group. At one stage during the interview, Jeff McMullen himself refused to follow a suggested line of questioning because of earlier objections raised by Antoinette. We finished at the Crown Towers about 9pm, a very long 12 hours from when the 60 Minutes crew first arrived that morning.

The next day, Antoinette, Shorona and I invaded RCH en masse. We all had a brief discussion with Garry Warne about the events of the previous day, including the lengths that we went to in order that RCH be cast in as positive light as was possible. Antoinette and I went to a meeting with Julian Savulescu (Professor of Bio-ethics at RCH) with Shorona staying to speak with Garry Warne in private. Discussion with Julian Savulescu turned to the 60 Minutes show and mention of the proposed RCH intersex bio-ethics study, with Julian Savulescu suggesting that RCH should be seen to comment in the 60 Minutes programme. With this in mind another invasion, this time of the (very small) office of the RCH publicist, took place. With Andrew Sinclair (Geneticist), Julian Savulescu and Garry Warne all in attendance, a decision was reached to comment publicly about the RCH position on infant surgeries and the proposed bio-ethics study. Antoinette and I provided as much information as we could about the line of questioning taken during Antoinette’s interview as well as those questions we considered most likely to be asked of Garry Warne. We left feeling that we had done all we could to forewarn RCH staff about the likely approach 60 Minutes would take, should they decide to interview Garry Warne.

On Wednesday, 60 Minutes filmed more vision of Antoinette at work at Ansett’s Melbourne Jet Base, Antoinette this time having to organise permission and making security arrangements for the 60 Minutes crew.

About lunchtime on Thursday that same week, I arrived at Ansett’s Melbourne Jet base, where I was met by a very nervous Antoinette. The purpose of the visit was to view a tape of the final cut of the programme, minus the yet to be filmed interview segments with Garry Warne. Julian Cress arrived some time later and Antoinette and I had a very emotional first view of the final cuts from the filming on Monday and Wednesday.

60 Minutes had maintained throughout filming and the interview process, that a final cut of the programme would be provided to Antoinette so that she could show her family prior to the programme being aired. On the Friday night the tape arrived at Antoinette’s place. On Saturday morning I saw the final programme for the first time. Both Antoinette and I had concerns about Garry Warne’s portrayal and so telephone calls soon saw Andrew Sinclair and the RCH publicist arriving at Antoinette’s house, where they too saw the programme. Not wanting to copy the tape provided, Antoinette and I then went to RCH on the Saturday and the programme was again screened in the presence of Garry Warne and an RCH senior executive. Following further discussions, Antoinette and I returned to Antoinette’s house where we prepared a media release supporting RCH on behalf of the AIS Support Group (Aust.). This was then sent out under Antoinette’s signature prior to the 60 Minutes programme being aired that Sunday.

The programme aired on Sunday night, with both Antoinette and I on-line in the 60 Minutes internet “chat room”. Here we took the opportunity to answer many questions from the “general public” (there being some 200 people on-line) and promoted the AIS Support Group. There were links provided to both the Australian and UK groups, the UK group later reporting a very large increase in “visits” to their site.

During the discussions at RCH on Saturday, both Antoinette and I agreed that we would be prepared to be interviewed on Melbourne radio station 3AW on Monday morning, once again in defence of RCH and Garry Warne. As I was in Adelaide on business for the following week, Antoinette was interviewed along with Andrew Sinclair, both supporting current efforts of RCH.

The 60 Minutes programme has, despite the controversy it has created, provided many benefits to the AIS support group and to the wider intersex community. Antoinette has been contacted by new members for our own group here in Australia, been contacted by others with intersex conditions who have been referred to other support groups, and been instrumental in the passing of amendments to the Equal Opportunity Act (Vic) that will help protect those of us with intersex conditions. Antoinette has also been invited as a representative of the intersex community, to take part in a committee formed to look at future equal opportunity legislation amendments. Our future inclusion in such forums is vital to protect the members of our own support group, and those of the wider intersex community. By the time you read this article, she will have attended her first committee meeting. On a personal note, the programme was seen by friends, relatives and work colleagues, opening many doors for me to discuss my own circumstances as someone with AIS and the issues faced by others with the condition. I have recently been invited to talk about intersex conditions on a two day Equity and Diversity program for Federal Government employees here in Melbourne.

Like many, I feel for Garry Warne and the way he was portrayed in the 60 Minutes programme. He is well aware of the respect and high regard I hold for him personally, and of the high esteem in which he is held by the AIS Support Group worldwide. It is, however, a fact of life that the practice of surgical reinforcement of gender assignment of infants with intersex conditions is becoming increasingly criticised, both from within and outside the medical profession. Any medical practitioner continuing to defend the practice, no matter how reservedly or conditionally, is going to be increasingly criticised for taking such a stance. In a recent court case, Judges of a full bench of the High Court of Australia when ruling on the right of parents to make medical decisions on behalf of children who are unable to consent, made comments to the effect [that] the right of a person to maintain their physical integrity cannot be compared with the perceived need to alleviate any potential social embarrassment that be may avoided by medical intervention. Such comments must surely sound a warning to those of the medical profession not only involved in surgeries themselves, but also those who maintain that secrecy is the appropriate way to deal with intersex conditions.

What direction should we take with the media? No one would ever suggest that the media is the perfect way to increase public awareness about sensitive issues such as intersex conditions. We have to start somewhere though, and print and visual media provide a system that, whilst having its flaws, is a well tried and tested method of public information exchange. Willing collaboration with those persons from the media wanting to portray intersex conditions in a positive light, is in my opinion an important initial step to educating the “general” community about such conditions and the issues faced by those of us who live with them. I recently criticised certain elements of a Herald Sun article on intersex conditions to a friend at work. She has long known of my AIS and has suffered her own struggles with severe endometriosis, including the experimental hormone treatments the medical profession has tried in efforts to treat her condition. Her reply was, that whilst factually flawed the article portrayed intersex conditions and those who live with them in a manner that was positive and demystifying in content. Perhaps there is no such thing as bad publicity after all.

Garry Warne’s Comments About 60 Minutes

Being cast as the “demon doctor” on 60 Minutes was not quite what either Antoinette or I hoped would be the outcome of my participation and it caused me and my family quite a bit of distress for four or five days. I was fortunate that 60 Minutes did a terrible job – most people could see the savage editing that made the “black hat” fit so that I could wear it – and so I don’t feel that my reputation took too much of a beating. Commercial television only cares about selling advertising and every issue must be sensational enough to keep the ratings high. Our segment certainly achieved that. I think we all realized that a 14-minute segment on 60 Minutes was never going to deal with the sensitive and complex issues involved in deciding what to do when a baby of unclear sex is born. It could not and did not. Unfortunately it not only sold the subject short; it distorted the truth in many ways. We have all learned some valuable lessons.

The good thing is that many benefits emerged from this experience. I was pleased that the community affirmed and applauded Antoinette for telling her story. I received dozens of wonderful messages of support from current and former patients, parents, colleagues, friends and my loving family. I now know that many women with AIS and other intersex disorders do not support the call for a moratorium on genital surgery in infancy. Perhaps they can find a way of telling their story too, one day.

I have also reflected that it may not have been a bad thing for me to be made to feel vulnerable, which is how many people with AIS must feel much of the time. If I felt hurt, misrepresented and a victim of prejudice, it is just what people with AIS are shouting about when they get the chance. I don’t want to be made to feel vulnerable all the time, because I need to be strong for my patients and their parents when required, but I do want everyone to know that we are all vulnerable together. It is human nature to seek power over others, but it a greater thing if one’s power is used to empower others. We should not take sides too strongly in discussing the issues that are before us, because there are many facets to every question when it comes to the lives of people born of uncertain sex. All views deserve a respectful hearing.

There was a lot of anger and indignation expressed on the 60 Minutes programme and it is easy to target doctors. Anger can be a fairly self-destructive emotion as well. People with AIS – and the rest of us – are seeking ways of better understanding fundamentals such as identity, sexuality and body image. It is a mistake to focus too much on the medical aspects of AIS. The answers may just as easily be found in meditation, art, poetry, dance, religion, drama – or who knows what? – depending on personal preferences. Perhaps it would be good to try to branch out a bit and try some different, more positive approaches.

I thought I would write to commend Antoinette for her courage in telling her story on Sixty Minutes and take the opportunity, to offer the perspective of parents of a PAIS child. I realize this was intended as Antoinette's personal story, but in my opinion the inclusion of a discussion about AIS, gave it significance to all of us who are involved with the support group.

It certainly made quite an impact on our family, as I imagine it would have done for many others who live with AIS in their lives. Whilst I applaud the idea of 'going public' with the aim improving treatment practices, I found the content of the article did not provide sufficient information to adequately address this complex issue. The programme seemed to be pointedly attempting to generate controversy which unfortunately was at a certain cost to others. I thought it was a great shame to see Garry Warne depicted as a professional of questionable motives, and to see this implication extending to other staff at the Royal Children's Hospital in Melbourne.

I acknowledge Antoinette has obviously had to deal with many issues surrounding her medical history, and has experienced much suffering that needs to be addressed. In facing these difficulties she exhibits a very robust spirit of strength, courage and determination. We extend to her the best of wishes for her personal 'journey' and hope that she is able to find a sense of peace with her life's experience.

However I must admit to having reservations about the media being used for the purpose of addressing AIS issues, as I believe these require a sensitivity or insight that journalists often lack.

One point in the interview which I was particularly concerned about, was the risk it ran of stereotyping people into gender identities according to their chromosomal status. Unfortunately I was unable to tape the programme, but from memory I can't recall even a passing mention that chromosomes and gender identity / biological sex don't necessarily make the standard match for AIS individuals. Rather, I found it was simplistic in the implication that 46XY chromosomes should always equal male, and 46XX chromosomes equate to female. There was not enough discussion on other influences affecting gender, so it is my belief that the public would infer that all cases of ambiguous genitalia, or indeed intersex status, be treated on the rather narrow premise of chromosomal makeup.
Whilst I understand the objective of attempting to influence the way intersex conditions are treated, I question using a vehicle such as Sixty Minutes for this purpose, due to it's recognized reliance on sensationalism. I believe this topic is too important and too complex for a one sided discussion which in effect, prevents the public from making informed judgements. I have previously expressed that I think any debate about paediatric genital surgery should include the views of both proponents for
and against this practice. A balanced argument would consider the opinions of surgeons and other medical professionals involved in sexual reassignment cases, as well those who are seeking a moratorium on such surgery (without overly aggressive questioning and editing of answers). The professionals would then be forced to make comments, listen, address concerns, and perhaps re-evaluate their position. Lobbying against them, without provision for fair reply will not necessarily be conducive to an environment of change. Personally I believe that doctors in general do have the best of intentions, perhaps misguided at times, but nonetheless with an aim to improving the quality of life for patients under their care.

In addition, as a parent of an AIS child, it is not only confusing but also disappointing when those we are involved with for personal support, are at loggerheads with the professionals whose care our family is under. We believe that part of our daughter's well being is dependent on the establishment of good relationships between the support group and medical professionals, in order that efforts to cooperate in establishing a brighter future are not obstructed. I imagine this interview may have caused some acrimony amongst those at RCH, but I may be wrong on this point.

From my understanding, Garry Warne has been instrumental in the establishment of support networks and counselling strategies adopted by RCH for the last decade or so. Certainly for our particular situation he was the person who encouraged us to get in touch with the support group and I know he has been of tremendous help to other families and individuals. To see him portrayed as morally questionable in his field of work was most disappointing. After all he is the one that has always, always been there to encourage the support group, to provide information and to liaise with other professionals. I think we should value him as one of those rare individuals who is passionately committed to his profession and the best interests of AIS individuals, their partners, family and friends.

I originally thought that a valuable opportunity was missed to recognize the AIS support group and it's role, in the hope of reaching isolated affected individuals. However I acknowledge that this omission may have been deliberate if Antoinette did not wish to appear to be speaking on behalf of the group.

I hope I am not being presumptuous in suggesting that the next support group meeting include some provision for a discussion on future media releases. I certainly would not dispute an individual's right to tell their personal story to whomever they wish, but it may be helpful to consider the opinions of others in the group who are stake holders. Our personal motive for joining the support group was to obtain support as parents, in order that we in turn are in the best position to support our daughter. Unfortunately it is far from supportive to be constantly confronted with opinions that suggest we have made decisions that will have a profound, negative impact on our child's life. Whist I acknowledge that the role of a support group may include the need for discussions that are of a controversial or painful nature, in our case it is having a undesirable psychological effect. We desperately need to hold on to the hope that our choices to date will not overwhelm our child's life. I think it would be helpful to remember that the operative term in the title 'Androgen Insensitivity Support Group (Aust.)', is 'support group', as opposed to 'lobby group'. In making these comments I am compelled to add that our dealings with the support group have included many positive experiences, giving us much knowledge, strength and the opportunities to establish relationships with people who are extremely giving, compassionate and encouraging.

I hope I have not been overly critical or misconstrued information in these efforts to articulate my particular perspective on this issue. I greatly appreciate the amount of time, effort and compassion that committee members put into the support group and we are most fortunate to have this high level of commitment.

I would like to establish as a preface to this article that as a principle of nonviolence, I attempt to maintain an attitude of no blame/compassion. I believe that people are imperfect and make mistakes - often because of ignorance or past trauma - which we need to take responsibility for, but the idea of bad/evil people is misleading and closes us to dialogue and the potential for change. In other words - no one's perfect.

I refer particularly to my understanding of how the medical community and others have (mis)treated intersex people. But we can't let that fact and the possibility that we have made mistakes stop us from forgiving ourselves and continuing to strive for more understanding and a better future.

As I learn more and more about my "condition", my past and the experiences of other intersex people, I am becoming more radicalised (getting to the root) of my intersex identity and perspective. I am wanting more and more to claim my intersex <1> identity and be "out" (and proud) about who I am. To feel natural, attractive and lovable as intersex, rather than as a "passing" womyn, or even a failed man.

It has occurred to me that the way that intersexness has been (mis)managed in the twentieth century is analogous to the assimilation policies the Australian Government had (and has) in regards to Indigenous Australians - absorb them, hide them, deny their existence. This assimilation attempt is often stated to be a form of genocide.

The medical community has (in our "best interests") gone to the extent of non-consentually surgically reconstructing many of us because (to paraphrase my general sense of their rationale) "we look funny". However, what is obvious though never stated is that what really threatens clinicians, scientists and sometimes parents and others (including ourselves) is our essential challenge to the binary concept of gender <2>. They cannot imagine other people having to relate to such a stark challenge to that way of thinking (ie. our intersex selves).

So, in a parallel of Aboriginal people being 'assimilated' to "improve their lives" (meaning make them more like white lives), we have been denied our gender-blending identities - and (often) bodies - to "make our lives easier" (ie. more like theirs), rather than helping to create a space where we can be safely more fully ourselves.

The assimilation (gendercide) policy is clear also from the many examples of secrets and lies that pervade our lives and treatment. The secrets and lies are primarily designed to maintain the facade of us being either male or female, even to ourselves, in the assumption that that is what we would want (despite being unable to ask us because that would mean telling us the truth about our bodies).

Aboriginal people and experience also teach us a term for our right to informed decision-making about our own lives - "Self-determination". I think that since many of us are of the privileged white class, if we ask loudly and clearly enough (ie. in the way of academic/scientific rationalist Western tradition) we will get it. But what would our lives be like if we were allowed to grow up un(re)constructed?

In Milton Diamond's recommendations for intersex "man"agement, an intersex child should be given a binary gender LABEL which could be worn, removed, or changed as appropriate without having to be surgically (and therefore irreversibly and non-consentually) assigned a gender. A child/adult may at any time choose to explore surgical options, the full ramifications of which should be explained clearly and put in a context of all the other options.

Ultimately though, it's nice to imagine a world where people who's only danger is to the idea of binary gender, could grow up openly as themselves and be loved for being just that.

Lesbian and Gay people and their experience show us that what was once (only 20-30 years ago) highly stigmatised and pathologised (homosexuality) is now fairly well an accepted and supported part of society. (It is clear that homosexuality is not accepted always/everywhere, but the changes in the last 30 years are apparent. I point to the success of the Sydney Lesbian and Gay Mardi Gras as a classic example).

So while we (as individuals and as a community) have to maintain our relationships with our past/present oppressors (the medical community and sometimes our parents/family/friends) we can start to challenge our invisibility and walk the path toward understanding, accepting and loving ourselves and being understood, accepted and loved by the rest of society.

<1> I am using the word intersex as a gender description rather than intersexual which has unnecessary sexual connotations, or intersexed which makes it sound like something that has been done to us.

<2> From an ecofeminist perspective, the binary gender construct appears to be a key symbol for a general dualist paradigm (womyn/man, good/bad, nature/civilisation) which is reductive (over-simplified) and therefore generally inappropriate and ineffective.

Out of Darkness

Exactly 30 years ago, I gave birth to a beautiful baby daughter. That’s what the announcement in the newspapers read. Both sets of grandparents were delighted and the pink baby clothes started arriving. I was proud and thrilled. 10 months later a Baby Health Centre sister expressed concern at the baby’s enlarged labia. She was examined be an Endocrinologist and diagnosed as having Testicular Feminisation. In lay terms, I was told she was of indeterminate sex and that when she was about 10 or 11 they would operate to correct the “abnormalities.”

From hereon I was left to grapple with what this actually meant. There were no support groups, counsellors or psychologists to offer advice on how to deal with the child as she grew and developed, so I didn’t. I buried the truth and to everybody pretended everything was fine. To my parents and family, I lied about why she went to hospital. I did a great job of covering up but I never actually dealt with it in a way that would help my daughter with her sexuality. This, she had to discover by herself and I understand better now, the confusion and agony she went through on her own for the last 20 years. In the last 12 months she has been doing her own research and discovery and it was she who introduced me to the AIS group.

If I could rewind my life to the year 1969 and start from that point again, I would, so that I could make my daughter’s lonely pain and suffering a little easier. Armed with the knowledge I have today, I would have had more faith in my family and friends’ ability to understand but how could I lead them out of darkness when I myself had drawn the blind.

Today, I am proud of my daughter and her independent achievements and if she is not always my daughter I will still be proud of her.

My Experience as a Person with AIS Working with Milton Diamond

By Linda Ann Watson

I first met Professor Diamond in July of 1997 at the suggestion of a friend. I found Dr. Diamond in his "cave"(the name he gives to his windowless office nestled in the corner of an obscure building on the University of Hawaii campus) working at his computer. Little did I know then that this would become a familiar sight. After introductions, he compassionately listened to my story and asked questions about my childhood and adolescence and the history of my surgeries and therapies. He told me that he did not believe I was a Klinefelter's but that I was AIS. I didn't know what that was. But he arranged and scheduled for me a complete medical work up by a local physician. Six weeks later the physician told me that Dr. Diamond was correct; I do not have Klinefelter's. My new diagnosis of PAIS was officially verified.

It wasn't until October of 1998 that I got a call from Dr. Diamond inviting me to participate in a seminar that he was teaching to medical students on intersexuality. I accepted his offer to attend the weekly classes somewhat tentatively. I was worried that he wanted me there as a specimen (as had happened in the past with Doctors who had called in their residencies to have a looksee). I soon realized my fears with Dr. Diamond were unfounded. In retrospect, I feel that he wanted me there to help me unlearn the misinformation I had encountered for a lifetime regarding intersex conditions and particularly my condition. In that class, I discovered that many others had suffered similar mistreatment and been subject to secrecy regarding their own body like I had.

Learning more so I could help others became my goal. I decided to go back and get my second Masters degree in counselling and guidance and also asked Prof. Diamond if I could study with him, not only to learn more about myself but also to help others in a similar situation. I began taking classes with him in January of 1999. In May of 1999 he offered me a desk at the entrance of "the cave." I would work on class assignments but I also started putting statistical data from Diamond's current AIS study into the computer. I began to see the scope of Dr. Diamond's approach to sexuality and gender. He shared examples on almost a daily basis of others crying for help. Letters, telephone calls and e-mail from all over the world arrived from various intersex and transsexual individuals and their parents and Dr. Diamond would spend much of his day compassionately replying to the myriad of questions.

Suddenly I realized I was not alone, as I had been led to believe by the medical professionals in my past. Dr. Diamond began to discuss more and more cases, as well as articles from other physicians he was peer reviewing, with me. As I studied and learned more fundamentals of anatomy and sexual development I was given actual cases to analyse and asked to offer guidance on the individual's intersex condition as well as the best approach to the sex of rearing or the appropriate treatment for that individual. I found I could also apply my background in psychology and education to these cases offering insight based on my own personal experience. Though Prof. Diamond has many times mentioned to others that he has learned a lot from me, I have to say it cannot be more than I have learned from him.

Dr. Diamond is a constant source of support for our community. He is disturbed by the way some in the medical profession and society has treated many of us. Prof. Diamond's approach is unique because of his background in both biology and psychology. He conducts scientific research in the field and he is genuinely concerned with the quality of life for intersex, transsexual, gay and lesbian individuals. He wants us to have the opportunity to make the choices that have been taken from us in the past.

I have slowly worked my way from the opposite end of the office to my current desk, which is at the entrance of his sanctuary. I feel honoured to be working with such a dedicated, caring individual. Though he is academic in his writing, he does not come across that way in person. We have spontaneous discussions and I sense that he listens to what I have to say. This reassures me that I am in the right place. I look forward to coming to the office and spending my days here. Though Dr. Diamond is hard at work he is willing to stop and answer any questions I may have.

Though I have focused on learning more about AIS and myself, my perspective has broadened beyond my own condition. Dr. Diamond has introduced me to other intersex individuals. I have been given the opportunity to meet others in person or through e-mail. One memorable occasion was my conversation with David Reiner, whose story has been published in the book, “As Nature Made Him; the story of the boy who was raised as a girl”. I discovered both of us had been psychologically brainwashed during childhood and adolescence but found the courage to overcome these experiences. In David's story, as in others, I see the helping hand of Dr. Diamond. Hearing of the suffering of intersexuals, transsexuals and homosexuals has led me to think about the connections between all of us who don't fit the narrow gender roles prescribed by society.

Dr. Diamond allowed me to co-present his current AIS study at an international symposium this May. I never imagined that I would meet so many other sex researchers since I am just starting out as a researcher. I am delighted that my experiences are valuable not just to him, but to other students who take his courses. My experiences and knowledge have served as a resource for the transgender community and I am hoping to serve as a resource for the intersex community. By working with Dr. Diamond I know am contributing to the body of knowledge that will positively help others.

Kylie’s Story…..

We were sitting in biology my friend and I, listening to the constant drain of the teacher’s voice, but our minds drifting off, until the word Hermaphrodite was mentioned and the whole class erupted in laughter, including myself. My friend and I discussed how weird that would be, and what a freak that person would be. Who would have guessed, 9 years later I would be explaining to that same friend of my male chromosomes and testes, this time gaining support!

My name is Kylie, I am 26 years old, and I have Complete Androgen Insensitivity. As this is my first article in our newsletter, perhaps I should tell you my story......

At the age of 11, my mother took me aside to tell me I needed to begin taking HRT, and that I was infertile due to deformed ovaries which were removed at the age of 4. The advantages were however that I won’t be menstruating, or going through shaving my arms or bikini line! At the age of 11, there were better things to be done of course, and after listening, I left to climb trees. I don’t really remember feeling upset at that time, however I was not good at remembering to take my oestrogen and went through periods of not taking it due to being different to others. This could have been prevented at the time, if only informed about the importance of HRT and Osteoporosis. The paediatrician we visited regularly asked if there were any questions after what my mother had informed me, and I quickly answered no, really wanting to leave before he decided to do another vaginal examination. Our family did not openly discuss this, and after the doctors’ visits, it was all forgotten quickly.

While growing up I was a tomboy, climbing trees, remote control cars and racing go-karts. Growing up in the country, swimming in rivers and enjoying the outdoors. Always wearing pants and never in a dress or carrying a doll! Pink my most hated colour. My friends had the same interests as myself, until around puberty, when of course the usual discussions began of periods and bra sizes. I used to sit quietly hoping a question would not be asked, or walk away if possible. For my 16th birthday I was given a bra for a present, suggesting my absence of breasts, and of course the joke was enjoyed by all except myself. I was interested in boys, and was lucky to share a wonderful first love, with a now close friend, for 5 years. This was a great experience growing together, and was lucky to have no difficulties in any sexual aspect. I now feel at the time it was helpful for feelings of belonging, and not feeling abnormal from my peers, but also increased my self-confidence. It wasn’t until the relationship was over, and I was meeting other men, that I questioned why I felt different!

Searching for the truth, I went to my home town to visit the family doctor of 20 years, only to be told that I was born a transsexual basically, and left me to walk out without any support given. Confused, Angry, and not knowing what to do, I spoke to a doctor where I worked, and was directed to Garry Warne. Thankfully, someone who greeted me with opened arms and a friendly smile, and sat me down to inform me correctly of AIS.

Finally to be told the truth, answered all the questions so simply. A feeling of relief was felt to finally discover I was not abnormal, and there were others who felt the same! A great load was lifted from my shoulders yet I hurt at the same time that a stranger was to sit here and discuss this most intimate detail of my body, and the people I trusted all my life had not! I eventually learned that my family was not told the truth either, and only fully understood when I confronted them with this. This caused alot of pain and anger and of course feelings of being guilty, for carrying this genetic trait was held by my mother. Of course this reaction was natural, however the problem I felt was that my only younger sister of 3 years also has CAIS and had not been fully informed..... I personally hold no anger towards my family for the way my situation was handled now, and understand the difficulty they faced. However I do hope this silence will be minimised eventually, which I know will bring us closer together. My family still find this topic difficult to discuss, and this I feel would have been prevented with correct counselling and medical support offered in the beginning. It is unfortunate that sometimes parents and some doctors overlook the difficulties faced by young women who do not have a menstrual cycle or pubic hair. I find this is the real source of anxiety for those of us who have to face it. I hold no anger for my gonadectomy being performed while young. I believe the doctors handled the surgery, at the time, the best way they knew how to, with the information they had known. Yet there was at no time any guidance, support or counselling offered to my parents or myself.

Living with AIS now, as a single 26 year old, I believe has made me a stronger person due to the emotional pain I have experienced. I believe it has made me more understanding and more compassionate as a person. I do not like being told I am a normal female just unable to have children, implying I am an inferior female. Who really has the right to say what is normal? I do not feel feminine at all, yet am told have a quite attractive feminine body. I am still a tomboy, and I feel this will always be a part of me. My best friends are outnumbered with males compared to females. Life is not easy, and questions are never unanswered, however at least knowing the truth I can aim forward and build my character on who I am, and hopefully help others along the path. With the stigma of feeling different and isolated no one really can develop into the person they are.

My sexual feelings are still towards men, and I hope to find someone who will understand and share my feelings. There is definitely however a stigma, with meeting a man for the first time, with nakedness, and hoping he accepts me. However this will be the growing curve of living with a condition. I still take HRT, and am at present on patches. I have recently had my bone density tested, due to a breakage of ribs recently, (don’t ask!). The results are just below average, and now am working to increase this, however I realise my early gonadectomy was not the only blame for this, but my denial and neglect to take it, due to being uninformed. Having close friends to understand now my personal feelings and be able to discuss them openly has helped a great deal, and enabled me slowly on the path of self-discovery and to build my self-confidence. Just to finally be honest and myself, wow what a feeling.

Having been travelling overseas for the past 3 years, through Europe, Africa and living in London, I was privileged to attend 2 UK AIS Support Group Meetings. Having only met 3 people, when discovering the truth of my condition, I was a little hesitant, but now swear that the meetings changed my life. To feel apart of a stranger within minutes, to finally feel like you are talking to someone on the same wavelength, or that they finally understand what I am talking about. To laugh, cry and dance while revealing our bare underarms, ahhh pure bliss. I thank them gratefully. My mask was finally removed, and for once in my life a feeling of belonging was emerged.

Now back in Australia, I am amazed to see how far the support group here has come, and thank everyone who has been involved in that. The newsletter, meetings, seminars, and actual support, well done guys. For those I have met, I look forward to seeing you again, and those I have not met as yet, I look forward to meeting you. Together we can make a difference, and make a stand for intersexed people of today society.

Let’s Pretend

I love to watch the very young children at play. Role play is such a natural development for them and they take to it like ducklings to water. Here comes another imaginary cup of tea for me to drink, accompanied by appropriate hissing sounds as the “tea” is poured!

I am reminded of the time when my sister and I used to play our games as children. We were confident in all manner of make-believe and grew up in a pre-television age when the imagination made all things possible. I certainly believed in fairies, and could fly like Peter Pan and Wendy. It was just a case of trying hard enough.

Innocence is but a brief interlude. My sister and I grew up to find ourselves in the Never Never Land of a different kind where it seemed we were the only inhabitants. Little did we know that we were the “lost boys” in a land with no Tinkerbell. We tried to fly, but the necessary flying equipment was unavailable. What to do?

Our early playtime came to our aid, for what we did have was a good imagination. We would simply pretend to fly like everyone else and everything would be all right. No one would even guess that it was our game of make-believe.

In May this year my sister died, alone with her imagination still intact. She really thought that just like everyone else she was managing fine – in fact flying really well and she didn’t need anyone to suggest that her map reading was out of date. I tried to tell her it was time to land and have rest but she would not listen and know I have lost her. Maybe she has found a proper pair of wings and gone to EVER-EVER Land. I do hope so.

I wrote a email to the Hair Institute in April regarding hair transplants (not that I want one) and this is the response I received:

Thanks for writing.

We specialize in ultrafine hair transplantation for special cases (not just regular bald people) including, but not limited to: burn patients, scar camouflage, SRS, TG, AIS, and other conditions or states. We can successfully relocate hair to scalp, facial, chest, and pubic areas.

Patients would need to be in San Diego California, for at least 24 hours. We can approve a discount almost equivalent to the airfare and hotel accomodations for one person, if a person with AIS is the actual patient.

If you are interested we can provide more details to specific questions. Please write to carlbazan@aol.com

Thanks for your time.
Truly,

Carl Bazan
Surgical Coordinator/Special Services
The Hair Institute, a Medical Corporation
San Diego, CA., U.S.A.
(619) 476-7401
www.thehairinstitute.com

The American April 2000 edition of Cosmopolitan featured an article on three women – one with 5 Alpha Reductase (Tammy) and the others with AIS (Kimberly and Hannah). Howard Devore (an psychologist who counsels intersex people and is intersex himself) and Cheryl Chase (Founder of the Intersex Society of North America, and a “true hermaphrodite”) were also interviewed.

The article details the secrecy and disclosure issues faced by intersex people and the struggles faced while growing up. Two of the women also talk of their marriages.

Apart from the title of the piece, I think it was sensitively written and portrayed the concerns regarding disclosure issues in a positive light.

Many thanks to Tammy from the AISSG(US) for sending the magazine to me, and for all involved for doing the story.

This is a new section where people write in their questions and hopefully some of us will write back with their answers. These can be published in the next newsletter if the author permits, or will be forwarded privately to the person asking the question.

Ø Is there a pattern of osteoporosis in carriers of AIS? I have been diagnosed with Osteopenia, my mother and grandmother have Osteoporosis. We are all carriers of AIS. My aunty (who has AIS) also has Osteoporosis, but this may be due to the fact that she didn't get HRT until she was 50.

Ø What is the consensus among parents of children with PAIS regarding gonadectomy?
Should this be done before or after puberty? I need to make a decision about appropriate treatment for my daughter soon!

Ø I've noticed recently in articles I've read in ALIAS and Good Medicine magazine that doctors have suggested that using progesterone with estrogen in HRT may be preferable to estrogen alone for reducing breast cancer risk. While the doctors I've had for my HRT treatment over the past several years have said there's no proof that estrogen HRT increases breast cancer risk it seems that others think otherwise, and that maybe progesterone is important, not just for those with a uterus.
Does anyone have a doctor that's recommended taking both for this reason? Or have any doctors reading this got any views on this? I also wonder if there might be other benefits in taking progesterone too. I know it’s available in a natural form as Wild Yam extract. Has anyone tried it?

Androgen-Insensitive Women Lead Normal Sex Lives
http://unisci.com/stories/20003/0810002.htm
Thursday, August 10, 2000

Researchers from the Johns Hopkins Children's Centre have determined that over the course of their lives, women who possess the same sex chromosomes as men - by virtue of a genetic mutation that leaves them completely insensitive to male sex hormones called androgens - can still lead active, normal sex lives.

The study, which appears in the August 2000 issue of the Journal of Clinical Endocrinology & Metabolism, suggests that androgens, long thought to enable women to experience orgasm and heighten their sex drive, may not be essential after all.
"Our current ideas about hormone-to-behaviour interactions may not generalize to humans," says Amy Wisniewski, Ph.D., lead author of the study. "The women reported that they had a good libido and normal sexual activity -- without sensitivity to androgens."

The research team, led by paediatric endocrinologist Claude Migeon, M.D., studied 14 women with Complete Androgen Insensitivity Syndrome (CAIS). Unlike previous studies of CAIS, Migeon and his research team followed the women's medical history well into their adult years. By the end of the study, most subjects were between the ages of 30 and 60 years of age.

CAIS results from a gene mutation on the X-chromosome that makes women unresponsive to androgens. Among androgens' many roles are guiding normal male development and, later in life, influencing male and female sex drives.

If sensitive to androgens, normal foetuses with the XY sex chromosomes develop into boys and those with XX sex chromosomes develop into girls. Without sensitivity to androgens, XY foetuses develop into girls.

A woman with CAIS is physically female, but with an underdeveloped uterus and fallopian tubes. In addition, she has latent testes, unconnected and embedded in her lower body cavity.

Since there are no outward signs of CAIS, women don't usually learn of their condition until puberty, when they fail to menstruate and visit a physician or specialist to find out why. The news is often a complete surprise, Wisniewski says.

Women in the long-term study knew they had a condition called CAIS, though many did not fully understand what the term meant. They were assessed for physical and gender development from childhood to adulthood, their knowledge about CAIS and their responsiveness to treatment options.

Overall, they reported satisfaction with their gender development, sexual function, body image and femininity. Eight of the 14 women exhibited no understanding of CAIS, and most desired more information about their condition. Women in the study requested that their identities remain confidential.

"These women were well-adjusted, psychologically and sexually," says Wisniewski. "But a lot of the women had some psychological counselling, and we believe it helped them."

The two most common problems associated with CAIS that require treatment are the psychological impact of perceived or real social stigma and an unusually high incidence of bone diseases such as osteoporosis.

Although a majority of the women said they were satisfied with the counselling and surgical treatment they received, estrogen therapy designed to thwart bone disease - prescribed soon after their CAIS diagnosis -- was often resisted by the women, Migeon says.

"The women can't understand why they need to take it, so there is a lack of compliance with estrogen," Migeon says. "But these women live well into adulthood, so treatment is very important."

Researchers from Columbia University, the University of Miami in Florida and The Johns Hopkins School of Public Health also contributed to the study, which was funded by a grant from The Genentech Foundation for Growth and Development. Additional funding was made available by the National Institutes of Health.

To learn more about sexual development syndromes online, visit this website.

Guidelines Created for ‘Intersex’ Babies
Doctors release report on ambiguous genitalia

Tuesday, July 4, 2000

Confronting some of the most highly charged issues in child development, the nation's leading group of paediatricians issued its first-ever guidelines yesterday for treatment of newborns with ambiguous genitalia.

A report by the American Academy of Paediatrics called the birth of such a child a "social emergency" that demands a circumspect approach and specialized medical attention.

Profound harm can be done if doctors and nurses use dehumanising language or assign a gender to an "intersexual" child too soon, the doctors group said.

"Because words spoken in the delivery room may have a lasting impact on parents and their relationship with their infant, it is important that no attempt be made to suggest a diagnosis or offer a gender assignment," the report cautioned. "The infant should be referred to as `your baby' or `your child' -- not `it,' `he' or `she.'"

The report was written by a committee of medical experts including paediatric endocrinologists, urologists and geneticists. It appears in this month's issue of Paediatrics, a medical journal published by the 55,000-member paediatrics academy.

The report reflects a deep rethinking under way in the medical
community toward issues of physical appearances and gender identity. Those issues can become most difficult in cases of genital anomalies, which can result from various genetic and hormonal causes. Diagnoses include testicular feminisation, cliteromegaly, micropenis, Klinefelter syndrome and adrenal hyperplasia.

According to many estimates, 1 out of every 2,000 or 3,000 infants is born with ambiguous genitalia -- which adds up to at least a couple thousand babies in the United States a year.

Some medical experts and patient advocates call for an immediate halt to early surgeries to "correct" an anomalous appearance, preferring to let the child make up his or her own mind at an appropriate age.

CALL FOR METHODICAL APPROACH

The new report stopped short of any such sweeping recommendations, suggesting instead a step-by- step approach to individualized diagnosis, starting with careful physical examination, laboratory studies and sensitive discussion with parents. In most cases, the report notes, intersexual children and their families will need specialized care and counselling.

The pronouncement comes with strong warnings against using words or taking actions that might tend to foreclose medical options for the family -- or stigmatise children who don't fit the norm.

"People make comments without a lot of thought sometimes," said Dr. Christopher Cunniff, a geneticist at the University of Arizona who, as chair of the paediatrics academy's genetics committee, was a co- author of the report released yesterday.

"It happens all the time in the medical field. We get somewhat inured to some of the difficult things that might be going on, and we can sometimes lose sight of the human level."

PROVIDING A VOCABULARY

For most family practitioners and delivery room personnel, Cunniff noted, cases of severe genital anomalies are so rare that "people don't have a frame of reference, or they say things they shouldn't out of discomfort. Here, we're trying to give people a vocabulary."

He added that the medical community is still debating the appropriate standard of care, goaded in part by vocal demands of some intersexual or transgendered adults who view surgery, unless chosen by the individual, as a form of genital mutilation.

An organization called the Intersex Society of North America, for example, demands "a world free of shame, secrecy and unwanted surgery" for people whose anatomy merely "differs from cultural ideals of male and female." The group's Web site is at http://www.isna.org.

BOOK RAISED AWARENESS

The issue has also received attention through the recent appearance of the book, "As Nature Made Him: The Boy Who Was Raised as a Girl," by John Colapinto (HarperCollins, 2000), about the case of a child's failed surgical transformation.

During an interview, Cunniff acknowledged that "the status quo is unsettled."

"A lot of issues have been going on during the last three or four
years that have highlighted the need to bring some information about this to the general paediatric community," he said. "This is a controversial subject."

Traditionally, parents of children with ambiguous genitalia would be urged to choose the child's gender as quickly as possible, and to have them undergo surgery as appropriate. Now, research suggests that a child's identity may not be so easily manipulated.

"There used to be an idea that gender is somewhat malleable," Cunniff said. "With the right hormones, a certain style of dressing and hair, the idea was that one could relatively easily reassign gender with minimal disruption."

That idea has been challenged on a number of fronts, Cunniff
acknowledged, which prompted the doctors group to conduct the formal inquiry that led to today's report.

"The concepts of `male' and `female' may be a little different as we understand them now," he said.

SPEAKING FROM EXPERIENCE

Cheryl Chase, founder of the Intersex Society, said the new report does not go far enough in condemning early surgery. But she welcomed the message that premature attempts at gender-assignment can lead to family discord and a lifetime of harrowing psychological problems.

The key problem, she said, occurs when people decide that "sexual ambiguity is shameful."

That happened in her own case, Chase said, recalling a confused childhood when she looked like a girl but felt like a boy, following mysterious operations she said were never explained to her.

"You really have to avoid assigning a sex until you can decide what sex to assign," she said, adding that before a surgical option is taken, "the child has to be old enough to understand what the trade-offs are."

DON'T REFER TO INFANT AS `IT'

The American Academy of Paediatrics issued guidelines yesterday for how doctors should treat newborns with ambiguous genitalia. Some highlights:

Ø No attempt should be made in the delivery room to suggest a diagnosis or assign a gender to the child. Typically, that is best done only after special screening and referral to specialists.

Ø Infants with anomalous genitalia should be referred to as "your baby" rather than "he," "she" or "it."

Ø Outward appearances can vary widely even in children with the same underlying condition. Therefore, physical examination alone usually is not enough to suggest a diagnosis.

Ø Care should be taken to ensure a "positive atmosphere" for the parents as they begin their relationship with the child. "The emotional tone established by health care professionals . . . can have a lasting influence on how the parents conceptualise the abnormal genital development."

Ø In explaining events to the family, health-care providers may need to convey some of the basic facts of gender development. For example, male and female embryos start with undifferentiated gonadal tissue, whose final appearance is shaped by the presence or absence of specific genes and hormones.

Ø Many questions remain as to the long-term psychological and physical aspects of treatment. Conflicts may arise in some individuals between their psychosexual orientation and their genital appearance
and function. Such problems should be handled by mental health professionals experienced in intersex disorders.

The following are quotes from a recent sitting of Victorian Parliament in the second reading of the Equal Opportunity (Gender Identity and Sexual Orientation) Bill.

"Since the introduction of the bill in the other house I have pondered how I would feel as a parent if one of my children had been born intersex.

It would be onerous for parents to have to decide whether to choose the gender of a baby very early after birth and have surgery to make sure the child had only one sex. I have come to the conclusion that if one of my children were affected I would probably leave the child as it was and wait to see what the child wanted. It would be a difficult decision for parents to make. The fact is that regardless of whether the need to change is psychological, hormonal or physical, any person who decides he or she relates better to the other gender needs the full support, understanding and acceptance of our community."

"A person of indeterminate sex is someone who is born without being clearly either male or female, and includes the following: hermaphrodites, who are born with equal male and female chromosomes and have both male and female genitalia; pseudo-hermaphrodites, who have 46 XX female or 46 XY male chromosomes and are anatomically mixed between the genders; people with Klinefelters syndrome, who have 47 XXY chromosomes and are biologically mixed between genders; and people with Turners syndrome who have 45 XO chromosomes and are biologically and anatomically mixed between the genders.

I ask honourable members to consider what it would be like following the birth of a baby to face a situation like that. It is something honourable members have probably never thought about. However, it is something I thought about when undertaking research for the bill. I feel for people born that way. It is imperative that as a community we sensitively address the issue, which would be horrifying, to say the least.

I am concerned that the bill does not deal with intersex people who do not wish to have reassignment surgery and who wish to live as an intersex individual. The bill does not deal with such people, who must be among the most discriminated and most vulnerable in the community. I hope the government will address the issue very soon, and as the Honourable Andrew Olexander said, that issue should have been included in the bill."

As many of you know, Bev has moved back to Canada. Andie and I attended her farewell lunch in May, (at a gorgeous winery near Albury). Her partner and daughter were there, as were many of her friends. (Did I mention the winery? hiccup......)

We are having a meeting in November. I will send out the details on a separate leaflet. Please contact Antoinette for further information (03 9 315 8809)

AIS Support Group Australia Newsletter

September 2000

Garry Warne’s Comments About 60 Minutes

Out of Darkness

Kylie’s Story…..

Let’s Pretend

Send mail to with questions or comments about this web site.
Please Note: The AIS Support Group Australia Inc. (A0041398U) is currently applying for Deductible Gift Recipient status with the Australian Taxation Office.
Last modified: January 17, 2002

AIS Support Group Australia Newsletter

September 2000

Garry Warne’s Comments About 60 Minutes

Out of Darkness

Kylie’s Story…..

Let’s Pretend

Send mail to with questions or comments about this web site. Please Note: The AIS Support Group Australia Inc. (A0041398U) is currently applying for Deductible Gift Recipient status with the Australian Taxation Office. Last modified: January 17, 2002

Send mail to with questions or comments about this web site.
Please Note: The AIS Support Group Australia Inc. (A0041398U) is currently applying for Deductible Gift Recipient status with the Australian Taxation Office.
Last modified: January 17, 2002