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This page describes how the support group got started, and covers some of the awareness-raising ventures, many of which were undertaken by group members or were influenced by the group. It includes informal talks, formal conferences, radio and TV broadcasts, and various other projects and campaigns. It covers study dissertations but does not cover other printed matter such as articles, books and magazines (these are described on the AIS in Books/Articles page).
Mr and Mrs B's daughter was diagnosed with CAIS as a baby in 1988. They immediately asked the specialist what seemed to them a natural and perfectly reasonable question - to be put in touch with other parents in a similar position. They were very surprised when he said he couldn't do this. Instead, he directed them to Contact a Family, a well-established UK national organisation that finds contacts for families coping with a rare medical condition. It also publishes a directory of medical conditions and their support groups which is made available to hospital departments, and it also helps people to set up support groups.
Contact a Family however, had never heard of Androgen Insensitivity Syndrome, or of its older name Testicular Feminization Syndrome (Testicular Feminisation Syndrome), and asked Mrs B. if she would consider setting up a support group for the condition herself. Initial referrals to her (mostly from desperate parents of babies and very young children with AIS) were made via Contact a Family and also via the In Touch Trust. At this stage this operated by word of mouth, Mrs B. had no literature, there were no meetings, no liaison with clinicians; it essentially consisted of Mrs B. offering her home phone number to give emotional support.
Mrs F., the mother of a girl in her late teens with CAIS, made contact with Mrs B. about her daughter's intense anger at having had the truth (about her diagnosis and possible need for vaginoplasty surgery) withheld from her. These two parents were the starting point for the development of AISSG as a full-blown support group.
Mrs F. had also sought help from Sheila N., a retired adoption social worker in N. England who, in Autumn 1992, had a short article about vaginal agenesis/hypoplasia (absent/short vagina) published in Issue (the magazine of the UK's National Society for the Childless). The social worker had come across one or two such women (not necessarily with AIS, but more likely with MRKH - see Related Conditions) in the course of her work and had been touched by their plight and courage (total isolation with no support; had never talked about it, etc.). Her article had invited affected women to contact her with the aim of starting a support network for this particular problem, and was also the route by which a third person who would be key to the development of AISSG (an adult woman with CAIS) made contact with the two mothers. Click here to see transcript of the Issue article.
In 1992 the adult AIS woman had experienced an emotional breakdown relating to her condition (having never talked about it with anyone, not even her immediate family). She came across the Issue article and knowing that vaginal hypoplasia was often a feature of AIS, she wrote down the social worker's phone number but carried it around with her for several months before she could summon the courage to phone her. She had never spoken the name of her condition out loud to another person, and had only been able to mumble 'yes' or 'no', fighting back tears, during medical consultations. When she finally spoke to the social worker in Dec 1992, the AIS woman agreed to be put in touch with Mrs F. who then told her about Mrs B's small phone support network for AIS.
The AIS woman also made contact with Hilary E., a gynaecology social worker at St. Bartholomew's Hospital in London, to discuss the idea of setting up a southern vaginoplasty support network (to complement Sheila's efforts in the north). Eventually AISSG was to take over the role of these two networks, since it was able to include vaginal agenesis/hypoplasia within the wider range of issues affecting women with conditions like AIS, MRKH etc.
The AIS woman established contact with Mrs B. and her embryonic AIS group (10 families) in Feb 1993, and desperately needing to channel her anger (at feeling she'd been forced to keep silent for so many years) into something constructive, started writing a factsheet for Mrs B to send out to people (see Literature), and a few years later a newsletter called ALIAS - Learning About AIS, vowing that a) AIS should be completely opened up into the public domain from behind the dark curtain where the medical profession seemed to have hidden it, and b) no youngster should in future have to suffer the isolation, stigma and psychological pain that she had undergone due to lack of emotional support. In these early days the support 'group' was very small (in July 1993 Mrs B was in touch with 10 familes in the UK and 2 overseas).
In late 1993 the AIS woman wrote to a number of clinicians whose names she'd seen associated with AIS, to ask for information on AIS and to enquire about their policies with regard to truth disclosure and psychological support for patients/families. (Some years later, an article in the support group's newsletter, ALIAS No. 9 published Autumn 1997, looked back at this letter and the key responses she received - the relevant excerpt can be seen here). Some clinicians were helpful but the vast majority seemed to have no policy at all for handling the psychological side of the diagnosis; and some clinicians were even quite negative about the formation of the support group. One gynaecologist tried to dissuade the group from sending its new AIS factsheet to families, in case affected teenagers (from whom he'd hidden the truth about their XY chromsomes and testes) should read it; and he was not at all keen, a few years later, on the BBC making a documentary film about AIS (see BBC 'Dark Secret' Documentary).
During 1993/94 the AIS woman compiled a 180-page 'AIS Review', being an illustrated monograph or handbook on AIS which aimed to be a reference manual for parents and patients, covering all the information she could find on the medical, psychological and vaginal hypoplasia aspects of the condition. She felt that such information (and there was very little on the last two subjects anyway) was not accessible to consumers but was safely locked away in medical libraries, the internet being in its infancy at that time (and doctors being very sparing with what information they provided). In late 1993, having reached 118 pages, she got some copies printed and bound, and attempted to get them reviewed by professionals. She was only partially successful in this task and didn't have the confidence to make the document generally available. This is a pity, since there was a lot of useful information and discussion material in it. It has been edited slightly in the intervening years and we make it available here [link to be added] as a historical document showing what one person was able to gather together in the early 1990s (before the time of web sites and email addresses).
In 1994, she arranged to visit (sometimes on her own, sometimes with the AISSG founder member Mrs B.) some of the clinicians she thought might be sympathetic/useful in building up the support group and who in some cases had agreed to comment on her 'AIS Review’.
In February 1994 she visited Dr. Keith Edmonds at Queen Charlotte’s women’s hospital in London and found him, unlike others visited later, to be most un-sympathetic to her cause. In March 1994 the two members visited Prof. Ieuan Hughes, an expert in the genetics of AIS in Cambridge, who was enthusiastic, and in May 1994 she visited Prof. Charles Brook, a paediatric endocrinologist at the Middlesex Hospital (now UCLH), and had a useful meeting. By May 1994 the UK group was in touch with 20 affected families.
Dr. David Grant (paediatric endocrinologist, Gt. Ormond St. Children’s Hospital/Institute of Child Health, part of UCLH) was found to be a particularly sympathetic clinician. She visited him several times in July 1994, to discuss her 'AIS Review' document and other matters, and found him keen to encourage changes with regard to disclosure, information provision and psychological support. Dr. Grant is shown here, on the cover of ALIAS No. 11, alongside a photo of Melbourne-based Dr. Garry Warne (another valued ally of the support group), on the occasion of a 1997 meeting hosted by Dr. Grant during a UK visit by Dr. Warne.
It was one of Dr. Grant's team, Dr. Richard Stanhope, who invited representatives of the group to take part in the intersex/AIS conference at the Royal Society of Medicine in 1995, at which we came into contact with the clinicians working with adult patients at UCLH (see Roy. Soc. Med. Symposium lower down on this page).
In 1995, the fledgling group published the first issue of its newsletter ALIAS (see Literature). Mrs F (who had herself been given virtually no information/support by her daughter's clinicians) helped in researching this by ordering photocopies of medical/scientific papers via her local public library (this was at a time before the internet and email became widespread). And the adult AIS woman started building this web site in 1996/7.
See Broadasting the Message lower down on this page for details of how the group members started to influence things via public appearances. See the AIS in Books/Articles page for information on the attitudes to AIS that were portrayed in the medical literature at this time, and how the 'voice' of patients then started to feature in print.
"Blasts from the Past" in ALIAS No. 9, Autumn 1997 (the very mixed reactions of doctors to news of a support group for AIS)
On Boxing Day, 26 Dec 1994, an AIS woman in her mid-30s was searching for information on AIS in her local medical library on the west coast of America, having received the usual (at that time) blank wall from doctors when it came to requesting information and contact with others. She was pleased to find an article, Once a Dark Secret, in a copy of the British Medical Journal and to find that the subsequent issue of the journal contained a response letter from a doctor. She photocopied the pages, and was reading them in her car at traffic lights when she realised that she'd failed to copy an additional page which contained the major part of second response letter from, as she put it, "....much more importantly, another AIS woman!" She rushed back to the library and found the missing page, which to her delight also contained the phone number for the AIS Support Group in the UK. She made contact just as the group was making the first issue of its newsletter, ALIAS, available - and in time to attend the UK group's first meeting in March 1995. And on her return to the US she started beavering away to set up a group there.
During 1996, when mailing copies of ALIAS to a professor in the US, she explained:
Issue No. 1 of ALIAS is very near and dear to my heart. When I received it in early 1995 I couldn't believe how great it was, and I used a yellow highlighter to indicate the sections with which I especially identified. I then re-read it using a pink highlighter. Needless to say, almost the entire newsletter became peach colored! And when I read that the first support group meeting would be in two weeks time, I was booked on a flight to England within the hour. Arriving at Heathrow airport and being met by the support group contact well, I hope everyone in their lifetime experiences such a wonderful miracle. If Id had a choice between winning $10 million in the lottery or finding the letter in the British Medical Journal listing the phone number for the support group, there is no doubt which I'd choose. And it would not even have been a matter of contemplating having $10 million to spend I would have chosen the BMJ letter without blinking an eye. Nothing has, or probably ever will have, such a profound influence on my life as that letter, and that newsletter.
On Boxing Day that year she emailed the patient whose BMJ response letter she'd found as follows:
I will be going to the medical school library later today to read your 1994 letter in the BMJ again and give thanks for having located it exactly two years ago today. It not only changed my life, but has changed, and will change, the lives of 100's if not thousands of people on this side of the Atlantic. Your letter provided notice to the world that support was available and we were not all alone. I know I've told you this before, but I literally owe you my life. I do not believe that I would be here today if I hadn't found the support and information which you and the group have provided to me. I did not want to continue living with so much emotional pain and so little understanding [out there] about what it is like to deal with the condition. Reading your letter to the BMJ, and learning that there was someone to contact, was the most profound and emotional moment of my life. It led me to locate the group, obtain the first newsletter, come to England, and start the process of healing.
And having found help for myself, I have been able to help many people here in the States who are in as much pain as I was two years ago. None of this would have been possible if I hadn't found your letter. There are approximately 7,000 people in the US with AIS; I thank you on behalf of all of us....
She has sent the BMJ letter-writer a similar email of gratitude every Boxing Day since then.
The US group held its first group meeting in New York City in Sept 1996. Annual meetings (with guest clinicians) were held in San Diego (1997), in Chicago (1998), in Seattle (1999), in Boston (2000), in Denver (2001), in St. Louis (2002), in Toronto (2003, jointly with the Canadian AISSG), in Madison, Wisconsin (2004), in Palo Alto, California (2005) and at Bloomington, Indiana (2006) etc., etc.. Regional meetings are also held.
In about 2010/11 the US group changed its name to 'AIS-DSD Support Group for Women and Families'.
Learning to Speak at 36 in ALIAS No. 3, Winter 1995 (US group founder's story)
Key Issues for AIS Women in ALIAS No. 5, Summer 1996 (article written by US group founder)
"1st N. American Meeting" in ALIAS No. 6, Winter 1996 (report on group meeting)
"2nd US Meeting" in ALIAS No. 10, Winter 1997 (report on group meeting)
"3rd US Meeting" in ALIAS No. 13, Autumn 1998 (report on group meeting)
"4th US Meeting" in ALIAS No. 16, Spring 2000 (report on group meeting)
"5th US Meeting" in ALIAS No. 18, Spring 2001 (report on group meeting)
"6th US Meeting" in ALIAS No. 20, Spring 2002 (report on group meeting)
"7th US Meeting" in ALIAS No. 21, Winter 2002 (report on group meeting)
In 1996, a Canadian AIS woman came forward and set up a Toronto-based AISSG. Canadian group meetings (with guest clinicians) have been held in Vancouver (July 1998) and at Toronto's Hospital for Sick Children (Nov 1998 and 1999); with several informal members' gatherings at other times. A west coast Canadian AISSG, based in Vancouver, was started in 2001. Since then there have been meetings at least once a year, both in Toronto and in Vancouver. In 2003 the annual meeting of the "American" group (US group with Canadian group) took place in Toronto etc., etc.
"Canadian AIS Family" in ALIAS No. 4, Spring 1996 (Canadian group founder's first letter to us)
"Canadian Representative" in ALIAS No. 5, Summer 1996 (Canadian group founder's story)
"What Kind of Outsider?" in ALIAS No. 13, Autumn 1998 (article by Canadian group leader)
"Canadian Meetings" in ALIAS No. 14, Spring 1999 (report on group meetings)
"Canadian Update" in ALIAS No. 17, Summer 2000 (update on recent progress)
"Canadian Update" in ALIAS No. 18, Spring 2001 (update on recent progress)
"Canadian Update" in ALIAS No. 20, Spring 2002 (report from new west coast Canadian AISSG)
"2nd Vancouver Meeting" in ALIAS No. 21, Winter 2002 (2nd meeting of Vancouver-based group)
Dr. Garry Warne, a forward-thinking paediatric endocrinologist at the Royal Children's Hospital (RCH), Melbourne, who has a long-standing interest in AIS, made contact with the UK support group in 1993 and since then we have had a close collaborative relationship.
In March 1995, Mary, a 50 year-old woman from Brisbane, Australia, who believed she had AIS, contacted the UK group for information, having been unable to find a peer support group in Australia, even with the help of a healthcare professional. She submitted her story for publication in ALIAS (see "Mary, Mary...." in ALIAS No. 8, Summer 1997) in which she said:
".....It was she [occupational therapist] who searched, and searched, until she found details of the UK-based AIS Support Group for me. It was like a gift from God. Here were real people similar to myself. When I received the support groups latest newsletter [ALIAS No. 5, Summer 1996], I didnt cry until I got to the article Truth-telling Debate on page 11. At that point, I just broke down because I identified so strongly with the support groups response to the journal article...."
...and she described how by that time she'd found that she had Swyer's Syndrome rather than AIS.
Mary attended our Sept 1996 UK meeting in Huntingdon at which it was agreed she would start a group in Australia based on the UK model, using our literature etc.
In 1996 Dr. Warne praised the copies of the UK group's newsletter, ALIAS, that Mary had sent him and asked if he could become an AISSG UK member (see "Australian Appreciation" in ALIAS No. 6). During 1996/7 the UK group helped him with the publication of his parent/patient booklet on CAIS (see below). Mary sought his help in setting up a committee for the small Australian group she'd launched.
Dr. Warne writes in a medical journal article ('Advances and Challenges with Intersex Disorders', in Reprod., Fertil. and Development, 10: 79-85, 1998):
"The AIS Support Group, started in the U.K. in 1988, formalized in 1993, and now active in the U.S., Canada and Australia, has done much to convince the medical profession that they have a responsibility to disclose all information relevant to a patient's diagnosis".
However, credit must also be given to Dr. Warne himself for promoting the disclosure of diagnostic information in a supportive environment and for organizing hospital-based meetings for his patients, before Mary started an Australia-wide peer support group. In Nov 2000 he told us (see "Australian Consortium" in ALIAS No. 18):
"I first began disclosing all of the facts about CAIS to parents 16 or 17 years ago [1983/84] (that's the age of my key patient) and by 1986 had begun holding meetings of the parents who had received this information. Affected teenagers were invited, after a couple of meetings just for parents. Very early on, a number of parents decided to write their personal stories (which I still have, although they were not used for anything).
The AIS Support Group [in Australia] was indeed initiated by Mary ________ in 1996. Any meetings before that were organized by the Department of Endocrinology and Diabetes at RCH. The AIS Study Group was established about 8 years ago [about 1992] to improve communication between members of the team of health professionals at our hospital who were dealing with AIS and other intersex patients."
In around 1996, with the help of the UK support group, Dr. Warne worked up his Notes for Parents/Patients on AIS into a proper booklet, titled Complete Androgen Insensitivity Syndrome, which was published in 1997 and is available from the UK support group (see Group Literature). It forms a companion volume to his 1989 publication, Your Child with Congenital Adrenal Hyperplasia.
After starting AISSG Australia, Mary, and then Jocelyn (who took over when Mary retired from group work due to ill health) collaborated closely with Dr. Warne, with occasional joint meetings being organised (RCH together with AISSG and other local support groups). In late January 2000, a new member joined the Australian group and took over the running of the group as an organisation that became independent from the UK and the consortium of groups represented on this web site. The Australian group then started its own newsletter (dAISy) rather than distributing the UK group's newsletter (ALIAS) in Australia. In Sept 2006 collaborative working resumed between the consortium and the Australian group.
In 2003, Dr. Warne published an appraisal of his experience with support groups in Australia (Warne G. L: Support Groups for CAH and AIS in The Endocrinologist, special issue, Vol. 13 (3), pp 175-178, May/June 2003).
"Australian AIS Specialist" in ALIAS No. 3 (Dr. Warne tells us, in 1993, about his work in AIS)
"Australian Appreciation" in ALIAS No. 6 (Dr. Warne writes to Mary praising ALIAS after she'd started an AISSG in Australia and asking if he could become a member)
"New Directions" in ALIAS No. 10 (dialogue with Dr. Garry Warne and excerpt from one of his papers)
"Antipodean Endocrine Forum" in ALIAS No. 10 (A joint meeting - RCH, AISSG and other support groups - for patients with various endocrine conditions)
"Good News Down-Under" in ALIAS No. 10 (Mary describes how her association with AISSG has changed her life)
"Meeting with Dr. Warne" in ALIAS No. 10 (AISSG UK members meet Dr. Warne in London)
"USA/Australia Subscriptions" in ALIAS No. 11 (Mary announces first AISSG Australia group meeting in Queensland, 7/8 March 1996)
"Advances and Challenges" in ALIAS No. 11 (Excerpt from one of Dr. Warne's papers)
"Australia/Canada Update "in ALIAS No. 16, Spring 2000 (Jocelyn takes over as Mary retires from AISSG Australia)
"Australian Consortium" in ALIAS No. 18 (Retrospective studies start on treatment outcomes in endocrine conditions)
In mid-1997 a steering committee was formed for the UK group and was approved by the members at the general group meeting in Sept that year. At this point the founder member, Mrs. B, stepped down as leader of the group. The UK group achieved official UK charitable status in early 1999. By Spring 2003 we had held 16 UK group meetings, published 21 issues of ALIAS and developed close relationships with selected medical experts to promote research and improve patient care. The UK group had about 115 parent/patient subscribers. One of our medical advisors, Dr. Gerard Conway, speculated (March 1999) that there might be 650 people with AIS in the UK.
The number of overseas contact people and groups has steadily increased. By 1996, 1998 and 1999 there were German, South African and Spanish representatives respectively. In May 1999 a group of 10 women in Germany held their first meeting. In early 1999, Sherri, the founder of the US group decided she wanted to maintain a lower profile within the group and concentrate on other things in her life so handed over the day-to-day running of the US branch to other members. Her active involvement is very much missed. In late 2000 group members in Norway, Italy, France, The Netherlands and Greece, who had attended UK meetings, decided to act as contact points for people in their countries. By Spring 2001 there was also had a Swedish representative. The fledgling Dutch group held their first official meeting in May 2001. The first meeting of the Spanish group took place in Dec 2001. By early 2002 there were representatives in Iceland, New Zealand and Poland.
One of the main 'black holes' (which is becoming an increasing problem as AIS becomes better known) is not having the resources to deal with enquiries from the press/TV. Co-operation with such enquirers provides a chance of publicity for the group and although we have had some sensitive press coverage, we have had some bad experiences of being 'taken for a ride' by people who are just out to sensationalize things in order to sell their publications (see AIS in Books/Articles). This must be a problem for many groups like ours. The most intense time of UK media interest was the late 1990s - early 2000s period. It has now died down to some extent.
Some of the main problems have been the obsession of the media with a) portraying intersex as always being associated with ambiguous genitalia and of necessity being a gender identity issue, and b) sometimes adding inappropriate and sensationalist headlines, illustrations, captions or voice-overs at the last minute to what otherwise can be quite a sensible and helpful article or film.
Unfortunately the 'shock, horror' factor sells more magazines/newspapers to those unaffected people who have a purient, voyeuristic interest, but severely hinders our campaign to educate the public and to reach affected people (especially when the media company neglects to mention the support group, even when we have helped them with the article and have requested them to include our web address.)
This is discussed in more detail under Terminology Problems on the What is AIS? page.
This section describes some of the talks, articles, TV/film appearances etc. undertaken by group members since 1995 in an attempt to raise awareness of AIS and to change medical practice. See the AIS in Books/Articles page for details of similar efforts undertaken via the printed word.
In April 1995, UK group members attended a symposium at the Royal Society of Medicine in London on Management of Intersex into Adult Life at the invitation of Dr. Richard Stanhope (paediatric endocrinologist) and at which a number of doctors suddenly realised that patients with AIS had been suffering because of a policy of withholding diagnostic information, leading them to seek a self-diagnosis via medical libraries and to live in silence/isolation thereafter, with no psychological support. We heard secondhand that some of the more 'old-school' medics apparently hadn't liked patient support group members being involved in the symposium, although none mentioned this directly to us and the support group received some very enthusiastic correspondence afterwards from a number of doctors who'd been present. Details of the symposium and the letters received were given in Issues 2 and 3 of the support group's newsletter, ALIAS (the relevant excerpts can be seen here). And click here to see the text of a presentation given to the symposium by an AIS woman.
Report on RSM Symposium" in ALIAS No. 2, Autumn 1995
"Doctors Write to Us" in ALIAS No. 3, Winter 1995
A documentary programme called XY Women (part of a series called Dark Secrets) was made by the BBC, with input from the UK support group, and screened in August 1996. The gynaecologist mentioned earlier, who operated a policy of withholding full diagnostic information, declined an invitation from the BBC to take part in the film and tried to persuade them not to make it. The BBC went ahead, with the participation of other clinicians. The programme contrasted the experience of two women with AIS; an older more secretive and stigmatized woman and a younger more open and confident woman. A BBC helpline number was given and enquirers were sent a factsheet on the series, compiled by the BBC and giving our group's contact details (now out of date). Many affected women have told us that this programme enabled them to achieve a major breakthrough in their lives, by enabling them to understand their own condition for the first time and by providing a means of opening up the subject for discussion with family members.
BBC Documentary on AIS" in ALIAS No. 6, Winter 1996
In Sept 1996, a UK group member gave a presentation to 100 or so paediatric endocrinologists at meeting of the British Society for Paediatric Endocrinology. Click here to see the text of the presentation.
The founder of the US group was invited to talk at a medical symposium on intersex in Istanbul, Turkey, 4-6 Nov 1996. The symposium was organised by the Turkish Association of Paediatric Surgeons and sponsored by the European Society of Paediatric Endocrinologists but there was no financial assistance forthcoming for her travel or accommodation, so she made a video presentation of her talk, at her own expense, which was screened at the meeting.
The group started developing this web site during 1996/7. See About the Site for a graph showing the number of visitors to the site since then. The availability of email/internet/www has made an enormous difference to the development of groups like ours and made the setting up of an international operation so much easier than it would otherwise have been. A US group member suggested that instead of the usual FAQs (Frequently Asked Questions) we should have FEEs (Frequently Expressed Emotions) on our web site!
On first contacting the UK support group in 1993, Dr. Garry Warne in Australia sent us a copy of some type-written Notes for Parents/Patients on AIS that he had prepared way back in 1986 for familes dealing with the diagnosis (in those 'dark ages' most other doctors didn't seem to have hit on the idea of truth disclosure with psychological support!). Out of this was to come, in 1997, the professionally produced parent/patient book on CAIS, written by Dr. Warne with some help from the UK support group. The AISSG UK Publications Editor helped by reviewing the text and this resulted in a certain amount of content change and re-structuring. He acknowledged her help in the Author's Note at the front of the booklet, along with that of his hospital's AIS Study Group (a group of clinicians at the Royal Children's Hospital and nearby hospitals). The Foreword was written by two AIS women in Australia known to Dr. Warne. See Literature page for ordering details.
Members of AISSG UK and UK the support group for Congenital Adrenal Hyperplasia were invited by clinicians at the Middlesex Hospital (part of the University College London Hospital NHS Trust) to a meeting on 6th August 1997 to discuss the development of multi-disciplinary clinics for XY female patients. Clinicians Gerard Conway, Sarah Creighton, Melanie Davies and Lih-Mei Liao met with seven representatives from AISSG and two from the CAH group. Out of this meeting grew the world's first clinic for adult patients (named the Middlesex Centre, after the old Middlesex Hospital, now demolished) that combined expertise in endocrinology, gynaecology and clinical psychology, enabling patients to see doctors in any or all of these disciplines in the course of a single clinic visit. For a link to the web page for the The Middlesex Centre clinic see Links to Other Sites.
Dr. Robert Marcus (osteoporosis expert at Stanford University) conducted a study of bone density in AIS including measurements made on some AIS women members of the group at the time of the second US group meeting in San Diego, Sept 1997. The (then) US group leader, Donna, was a co-author on the paper that reported the results (see Research Studies).
In Sept 1997, BBC Radio's Woman's Hour programme broadcast a discussion of AIS, featuring the voices of AIS women and medical experts including Dr. Gerard Conway (Consultant Endocrinologist, UCLH, London).
On 20 Nov 1997 two UK group members attended the launch of the Rare Disorders Alliance UK (RDA-UK) which had been set up under the aegis of the UK's Contact-a-Family organisation. Its purpose is to promote the interests of UK families/individuals affected by a rare disorder. It has links with the European Organisation for Rare Diseases (EURORDIS) and is similar to NORD in the US.
A UK group member helped a London film company (The Mission) make a documentary called Is it a Boy or a Girl? for The Discovery Channel and featuring her experience with AIS. It was transmitted on Sky TV in Jan 1998. Various versions of the film were subsequently produced for different TV channels. It was screened by UK's Channel 4 in Sept 2000.
Although the content remained a more or less factual account of the woman's AIS experience, the introductory sequences for some of the versions were rather over-the-top. One of them involved 'horror film' music accompanying footage of liquid streaming off the edge of a table on which various strange objects like skulls were sitting. It really is intriguing, the lengths to which some media people will go, to suggest that a naturally occurring biological condition is something weird.
ALIAS Refs (to Women's Hour and Discovery Channel programmes):
"Consciousness-RAISing" in ALIAS No. 9, Autumn 1997
"AIS on TV (Past)" in ALIAS No. 17, Summer 2000
The 6 February 1998 transmission of the BBC Radio 'Bedtime Stories' programme included an interview with Chery Chase of ISNA about her personal experience as an intersexed person. AISSG UK was not involved: the broadcast is mentioned here for general interest. The producers were H. Andraszy(?) and C. Cook.
A retired social worker who is a member of the Canadian group, gave a talk to the above society in Albuquerque, on 18 April 1998. After giving the talk she emailed a group of AIS women saying "I spent 3 months preparing for this..... It did marvels for me. I no longer feel (after 65 years) that I am a 'throw-away' person but have taken my place for who I am, and that person is okay." Click here to see the text of her talk. Other members of the Canadian group have also given very successful talks to medical students.
In July 2012, now aged 79, she sent us the text of a short story called Remembrance Day that she'd written about her experience with AIS.
"Sex, Lies and Ideology"in ALIAS No. 6, Winter 1996 (text of a letter she had published in the Canadian Medical Association Journal)
"Old Friends" in ALIAS No. 12, Summer 1998 (her reaction to having given the talk)
"Canadian Meetings" in ALIAS No. 14, Spring 1999
In 1998 we helped Stephanie Wisniewski, a genetic nurse in Wales, with a dissertation on AIS as part of her diploma course in genetic counselling. She says this was prompted by a preliminary literature search which she carried out on AIS and which just came up with a load of papers containing medical gobbledegook. She decided there was a real need for more knowledge on the psycho-social side.
During 1998 a number of AISSG members in the US were interviewed by sociology doctorate student Sharon Preves for a research study titled Sexing the Intersexed: Lived Experiences in the Socio-Cultural Context (completed as PhD dissertation, University of Minnesota, 1999) examining individuals' personal experience and perceptions of being intersexed. In 2003, she published a book Intersex and Identity: The Contested Self (see AIS in Books/Articles) and was now Assistant Professor of Sociology at Hamline University, St. Paul, Minnesota.
In Spring/Summer 1998, a CAIS member of the US group got a doctor to post some material for her on an Internet bulletin board to which only health care workers were allowed to post, the participants being geneticists, genetic counsellors and obstetricians/gynaecologists. Click here to read what she wrote.
Please see the Debates/Discussions page where some group members discuss this episode of the TV hospital drama.
In 1999, the UKs Genetic Interest Group (GIG), to which we are affiliated, promoted the establishment of several GIG consortia within which support groups covering similar conditions could get together under GIGs direction to pursue common aims, and take advantage of joint muscle power in areas like increasing awareness and fund-raising. The GIG consortium to which we belong includes the Anorchidism Support Group (ASG) and the UK Turner Syndrome Society and our first project was the preparation of a leaflet titled Does your child have a genetic disorder? What do you need to know and from whom? (see Literature page). This is aimed at families receiving a diagnosis of a genetic condition; to help them frame the questions they might need to ask of clinical staff (and including a list of possible questions).
In early-mid 1999 an unsympathetic, badly researched and inaccurate treatment of AIS by Germaine Greer in her book The Whole Woman prompted letters to Ms Greer from group members and from medical professionals associated with the group. Ms. Greer responded to some of these, trying to shore up her position and expressing exasperation at being hounded (and, much to our delight, referring to the exchanges as a 'furore'), even to the point of devoting one of her regular Saturday columns in the UK's Daily Telegraph newspaper to a sarcastic and negative coverage of the topic. See Debates/Discussions for transcripts of the discussions.
However we detected a shift in her argument in the course of all this and felt that we had certainly given her some food for thought. We regarded it as a significant success, especially since her Telegraph article had given us more publicity than we could ever hope to have generated on our own! The UK's Genetic Interest Group saw the article and asked us to submit something for their newsletter GIG Today, as "an example of successful campaigning and an example of how even supposedly educated people can take a very narrow-minded view of genetics".
In Spring 2000, the paperback edition of Greer's book was published, with a few factual changes in the relevant chapter (apparently quite an unusual event in the publishing world), but her 'take-home message' unfortunately remained much the same.
In Jan 2000, Sherri, the founder and outgoing leader of our US group was honoured with an invitation to join the 30-strong executive committee of a newly formed North American Task Force on Intersex (NAFTI). The taskforce was set up by Dr. Ian Aaronson, a pediatric urologist at the Medical University of South Carolina, to re-evaluate the way intersexed babies/children are managed. She is one of two representatives on the committee from patient support/advocacy groups. See Announcements for more details.
A documentary programme called Hormonally Yours (part of a series called Body Chemistry) was made by the BBC and screened on BBC2 on 15th Feb 2000. A TV listing described it as follows. "The final [third] episode examines the hormones that determine gender, revealing how there is more to the process than meets the eye....." A CAIS member of our US group was featured in the programme. The programme treated the subject reasonably sensibly but we were surprised to hear the odd stupid voice-over like " Technically _____ [name] is a man, but lives as a woman"!
In April 2000 the founder of the US group gave a presentation to a meeting of the North American Society for Pediatric and Adolescent Gynecology (NASPAG) in Atlanta.
At the 5th US group meeting, in Aug 2000, Dr. BJ Rye, a psychologist from Ontario, Canada (email: firstname.lastname@example.org) who herself has eight AIS relatives (see Extended AIS Family in ALIAS No. 10), presented the results of her study, titled Attitudes toward a woman with AIS: Implications for disclosure. Shed compared peoples attitudes to a hypothetical scenario in which a woman either declares to them that she is lesbian or declares that she has AIS. Her conclusions were that attitudes toward the intersexed may be more negative than those toward lesbians because of lack of familiarity with AIS; and that general homophobia in the listener was a good predictor of negative attitudes towards both situations, particularly when women were coming out to men.
We helped Michal Rachel Nahman with her M.A. thesis, Embodied Stories, Pragmatic Lives: Intersex Body Narratives on the Net (Graduate Program in Social Anthropology, York University, Toronto, Sept 2000). Our group, web site etc. are discussed in the thesis. She described her study as follows: "I seek to study the current rise in social activism around intersexuality. My main goal is to study the ways in which the Internet is being used as a means of disseminating information about intersexuality and for challenging societies ideas about gender, sexuality and medical treatment of intersexuality." Copy available at http://www.collectionscanada.gc.ca/obj/s4/f2/dsk1/tape2/PQDD_0022/MQ59188.pdf or here.
We helped Marina Murphy with her thesis titled Intersexuality: Still Taboo in the 21st Century (Dublin City University). It was part of her Masters Degree in Science Communication and focussed on the experience of being intersexed. She said:
Its an attempt to educate people about the fact that it is not as uncommon as most people seem to think, or perhaps would like to think. Those of us who know about AIS do not realise that the vast majority of people are ignorant of it. When I suggested that I do this project... my lecturers were very interested but of course totally in the dark as to what I was talking about. I have been doing some research.... and have found that many doctors (GPs) are not very familiar with this issue at all. This only made me more determined to write about it.
AISSG has a copy of her thesis, dated August 2000.
In Sept 2000 the UK group made a presentation on the group's views and work at a meeting of the British Association of Paediatric Urologists in Cambridge. We learned about the dilemmas facing paediatric urologists in caring for intersexed children and they learned about the calls for change in practice being voiced by some intersexed adults. We were quite surprised that the clinicians didn't seem to be familiar with any of the recent discourses on psycho-social aspects of intersex, even though they were making decisions regarding surgery that would permanently affect how these infants would function as social and sexual beings.
Our representative for the French-speaking part of Switzerland took part in a TV discussion of AIS and other gender-related issues in the 9th Nov 2000 screening (Homme ou femme, qui suis je?) of a regular French TV programme, Ça ce discute. See http://www.casediscute.com/home.html. Copies of the programme on video cassette can be obtained from http://www.reservoir-prod.fr/boutique.php3.
The UK group accepted an invitation to speak at a conference on 17/18 Nov 2000 titled Atypical Gender Identity Development: Therapeutic Models, Philosophical and Ethical Issues organised by Dr. Domenico Di Cegli at the Tavistock Centre, London. We were asked to speak about "Working with Self Help and Support Organisations" in the section of the conference titled "The Psycho-social Management of Intersex Disorders".
The BBC2 Horizon documentary, The Boy Who was Turned Into a Girl, about the recent public exposure of the Bruce/Brenda (alias John/Joan) case and the changing attitudes towards the treatment of babies with ambiguous genitalia, was screened on 7th Dec 2000 in the UK. Milton Diamond took part in the film (with other clinicians/researchers such as Drs Reiner, Grumbach, Ransley, Gorski and Swab). The UK group was asked to put forward a group member who was unhappy about having undergone genital surgery but we couldn't find anyone to take part.
During 2001, we raised objections to a proposal by NSCAG (National Specialist Commissioning Advisory Group), part of the UK's Department of Health (DOH), to centralise UK intersex treatment at a single London hospital with which we have no ongoing relationship (unlike that which we enjoy with the UCLH/Middlesex and Leeds hospitals where many of our group members are treated) and which, as far as we know, still held to a policy of non-disclosure to its XY female patients.
Clinicians from the hospitals concerned and representatives from interested support groups attended three meetings of a panel to discuss the matter (22 Jan, 22 Mar and 13 June 2002). The outcome of the third meeting was a Model of Care document for intersex patients that outlined what a good service should provide and which was to form the basis for commissioning the service. Members of AISSG UK had a chance to make comments on the document, which we had to feed back to the DOH by 9 Sept 2002. See Announcements for full details of the campaign.
The outcome was that the patients' (support groups') views were ignored/over-ruled and the hospital that operated a policy of non-disclosure was to continue being centrally funded as the National Centre for Adolescent and Adult Females with Congenital Abnormalities of the Genital Tract. Meanwhile, the hospitals of choice for many of our members (and those of the other support groups involved in the discussions), whilst not prohibited from offering intersex clinical services, would have to compete with other clincal services for funding at local level.
Strangely, the hospital favoured by the DOH claimed during the discussions not to treat intersex patients (but only to carry out vaginal hypoplasia treatments on non-intersexed XX women with conditions like MRKH), even though the slides projected by their representative at one of the meetings provided clear statistics of the throughput of patients with various intersex diagnoses, and even though we had been getting a steady stream of enquiries from intersex patients and ex-patients of the hospital, complaining about their treatment with regard to paternalism and lack of truth disclosure.
On 23 Oct 2001 the UK hospital drama series Holby City featured a small girl with AIS and her father's difficulty in accepting the information. We had been approached by the programme makers in January and had impressed on them the importance of a sensitive approach and the need to make sure viewers knew that further information and support was available. The episode was quite well done on the whole and the existence of support was mentioned twice to the father! The daytime TV series Doctors also featured AIS in an episode around that time but the TV company chose to mention only the Intersex Association of North America (ISNA) on their web site, which is a bit of a shame since it was a UK programme!
BBC2 (9pm, 27 Jan 2002) screened an episode called The Secrets of Sex as part of their How to Build a Human series. It featured the CAIS member of our US group who took part in the BBC's Body Chemistry series (see earlier in this list). She told how she eventually found out her diagnosis and explained what it means to be an XY woman, and it showed her emotional reunion, many years later, with the anatomy professor who had helped her cope with the diagnostic information in her 'hour of need'.
A symposium was held at the Institute of Child Health in London on 28 Jan 2002 titled Intersex in the New Millennium: A Multidisciplinary Forum for all Involved. See Announcements for details of the programme. It was jointly organised by Miss Sarah Creighton (Consultant Gynaecologist, UCLH Hospitals) and the UK AISSG. 147 delegates attended, of which 45 were 'patients' or parents. Group members gave presentations (The Role of the Support Group and Problems with HRT: An Intersex View), as did clinicians in various specialties.
A paper on the symposium was published as follows: Creighton S. M., Minto C. L., Liao LM, Alderson J. and Simmonds M: Meeting Between Experts: Evaluation of the First UK Forum for Lay and Professional Experts in Intersex. In Patient Education and Counselling, Volume 54, Issue 2, August 2004, pp 153-157 (see here or via ScienceDirect).
On 1 Mar 2002 a group member (Lynn) spoke at the Royal Free Hospital Medical School in N. London to students starting the clinical phase of their studies. The day was organised by the Genetic Interest Group (GIG) one of whose trustees, Dr. Debbie Kirklin, is a lecturer at the Royal Free. The idea was for second year undergraduates to meet families and individuals to learn more about living with genetic disorders on a day to day basis.
On 18 Mar 2002 another UK group member (Margaret) talked to endocrinologists at St. George's Hospital (a large S. London teaching hospital) as part of a day on intersex conditions. She walked into the room just as Sarah Creighton (cons. gyn. UCLH) was finishing a talk and had put up a slide which read: "The advent of well run support groups has radically altered management and awareness of these conditions"! On 17 April another group member (Tess) talked to another batch of doctors at St. George's. She said: "They were all really interested and serious! They actually surrounded me at the end to keep asking questions." She was asked to repeat the talk on 19 March 2003. A recently joined group member (Christine) gave a talk there (to about 70 final year medics) on 5 May 2004. Another newish group member (Dee) gave the talk on 11 May 2005.
On 19 June 2002 another member (Rebecca) did a presentation at the Birmingham Medical Institute to some members from the West Midlands Endocrine Group. She said: "It went really well with intelligent questions, and surprisingly I wasn't at all nervous, and dealt with questions about my vaginal length with humour and a smile!! They certainly appeared to enjoy it, and it went on for 2 hours easily before a natural break."
A group member (Sara) gave a talk (at the request of the Genetic Interest Group (GIG), to infertility counsellors in Edinburgh on 5 Sept 2003 during a day organised by the British Infertility Counselling Association (BICA) whose counsellors are facing questions from patients on infertility and genetics and need to get up to speed on how genetics and reproductive difficulties can link to each other. She spoke again, this time to genetic counsellors, at the BICA's annual study day at the Tavistock Clinic in London on 6 May 2004. The day was titled Infertility - Our Bodies Ourselves and "looked at body image/genetic causes and the impact of these on women psychologically and, in particular, issues of infertility".
Another group member (A) gave a presentation at a National Endocrine Nurses conference in Manchester on 21 Nov 2008 where the theme was the transition of patients from paediatric to adult services. She related how she was diagnosed with CAIS at age 15, but was not informed until she found out by accident at age 26, by which time she'd had 2 related operations, as a minor and as an adult.
Celia Kitzinger (then a psychology professor at the University of York) told us there was a possibility she'd be offered funding to do three years of intensive research on a topic of her choosing, starting in October 2000. After a meeting with a support group representative, at which they discussed ideas, Celia wrote saying that she was"putting together a proposal which will focus on exploring women's own experience of AIS (and PAIS and related conditions), with particular reference to issues around disclosure" and went into some detail about what she proposed to do and how. It then went quiet and we heard on the grapevine that Celia had gone to the USA for a year. And it seemed that instead of doing a study she'd decided to publish a book chapter (2000) reviewing published work on AIS and including substantial material/quotes from the AISSG UK newsletter (ALIAS).
However, in mid-2002 Lesley Gallacher started a study with the above working title, under the direction of Prof. Tricia Sloper and Prof. Stevi Jackson in the Dept. of Women's Studies at York, and involving interviewing women with AIS-like conditions (including AISSG members) about their experiences. The study was completed in 2003 and formed the basis of her dissertation (M.A. research degree awarded 2005).
In June 2002, four women (a UK group member, a member of our German sister group XY-Frauen, a young AIS woman whose parents had attended a UK group meeting in 1997 and a CAH woman) talked to the camera for a documentary film Gender Trouble. It was made by Roz Mortimer (email@example.com) of Wonderdog Productions and explores people's experiences of intersex (no clinicians taking part).
The film was funded by the Wellcome Trust as part of the Sci-Art venture to combine science/medicine (intersex) with art (film-making) and had its first UK screening at a Wellcome Trust symposium in Liverpool on 26 Sept 2002 (see http://www.wellcome.ac.uk/News/Media-office/Press-releases/2002/WTD002883.htm). It was also being screened at the National Science Museum in Taiwan (Oct 2002 for 6 months), at the National Film Theatre, London, on 13 April 2003 (and at other film festivals), on TV (Sundance Channel, USA, June 2003) and at numerous film festivals thereafter.
A representative from the Wellcome Trust's Medicine in Society programme emailed Roz shortly after the film's release saying:
I thought Gender Trouble was a simply incredible piece of film - thought provoking, moving and beautiful. We have 'public engagement' as a Trust mission, and our department particularly works to raise awareness of ethical and social issues arising from biomedical science. I don't know if I've ever seen it done better than by your film. Please do pass on my comments to the women who appeared in the film. They deserve the highest credit and praise. They came across as breathtakingly courageous, articulate, eloquent and perceptive. No-one in the room was left in any doubt of their strength of character. Your film was so impressive because in giving them space to tell their stories, powerful and miving in their own right, it also generated obvious broader resonances. Do you know how many discussions it generated? At all kinds of levels... [discussions] of the stories of those women and how thet have been treated; [of] gender and identity; medical and social labelling of people; power relationships between patients and doctors (and parents and children); the impact of narrative, emotion and image in public engagement....
I'm delighted by this response which echoes a great deal of the reaction at Liverpool. I feel proud to have made this film: on both a personal and professional level it has been an inspiring experience.
Shortly after its release the film was made available on video (GBP 23.50) via http://www.wonder-dog.co.uk/gender.html, and was purchased by a number of clinical departments.
More recently, it has been made available on DVD as part of a package (GBP 5.00) that includes a book containing write-ups about the film. The book is titled 'Talking Back to Science: Art, Science and the Personal' (edited by Bergit Arends and Verity Slater, 2004) and is published under the Wellcome Trust's Science and Art programme (http://www.wellcome.ac.uk/News/Media-office/Press-releases/2003/WTD002913.htm). It is described as:
A unique written, photographic and DVD journey through the final nine projects funded by the Science on Stage and Screen Programme of the biomedical charity the Wellcome Trust. Through text, images and a DVD Talking Back to Science provides an insight into the work of artists and scientists collaborating to explore biomedical science through performance, film and video. The artists and their contributors speak with candour, love, sensuality, poetry and intelligence about subjects as diverse as intersex conditions, osteoporosis, visual agnosia, cancer and autism. The scientists speak of the new perspective that artists can bring through their lateral and associative thinking, finding connections that a scientist might have overlooked in favour of the telescopic vision they assume out of necessity.
The book and DVD can be ordered via http://www.cornerhouse.co.uk.
On 8 Nov 2002 the member of our German sister group (XY-Frauen) who appeared in the Gender Trouble film (see above) spoke at a conference, The Newborn with Ambiguous Genitalia: Diagnosis, Sex Assignment and Treatment, in Pisa, Italy, organised by Dr. Silvano Bertelloni (firstname.lastname@example.org) and Dr. Paolo Ghirri. She reported back; "Have found our Latin friends to be much more enlightened than expected and largely willing to explore things from many perspectives". You can read her presentation here.
In mid-2003 the UK group helped Annalena Eckert, a german student at the University of Essex, with her M.A. study on The development of feminist, gender and queer debates and their impact on social practice concerning intersexuality. She was particularly interested in the use of the internet for debate amongst intersexed people and in the development of support/advocacy groups. Her final thesis, titled The Historicisation of the Hermaphroditic/Intersexed Body: From Medicalisation to De-Medicalisation is available here (783KB).
In 2005 it came to light that she was now doing a PhD at the Centre of Interdisciplinary Gender Studies, University of Leeds (see http://www.leeds.ac.uk/gender-studies/about/eckert.shtml). In 2005 she also gave a lecture in connection with an exhibition in Berlin called The two-gendered system as human rights violation (see http://www.yorckberlin.com/1-0-1.html and click on 'data' and 'gallery' to see more interesting information/photos).
In Aug 2003, the UK group helped Ingrid Holme (email@example.com), a PhD student at the Egenis centre (part of the new ESRC Genomics Network) in the University of Exeter, by reviewing the text of a lecture she was preparing titled Reducing Uncertainty in Intersex Conditions: What Can Genetics Do? It was to be given at a meeting (Hope, Hype and Hysteria: Living With Genetic Uncertainties) of the Postgraduate Forum on Genetics and Society at the University of Sussex on 20-22 Aug. She initially made contact to ask for permission to use some material from our web site.
She explained that her research "is directed towards exploring how the category of biological sex is changing with the movement from genetics to genomics" and that she intended "to set up an internet survey to explore how people use genetic and genomic information to form the concept of biological sex" using information from "the intersex, transgender and homosexual communities on the web".
In April 2005, she made contact again, asking to quote anonymously from some of the personal stories on the site ("that show clearly how dynamic people's understanding of their chromosomes can be") for a lecture in July on Sex, Genetics and Personal Identity (at a meeting of the International Society for the History, Philosophy and Social Studies of Biology (ISHPSSB) in Canada) explaining that:
The work rests on the problematic linkage between chromosomes and personal identity [but] does not concentrate on the AIS personal stories, rather it's the starting point for exploring the narratives of chromosomes propagated in popular science books such as Adams Curse by Professor Bryan Sykes (2003)... ...In these books there is a clear belief that the Y chromosome holds the 'maleness', and the author connects with his father and grandfather through viewing his Y chromosome... ...I wish to use a few citations of how the personal stories make reference to the X and Y chromosomes (such as "my fellow XY women", "regular XX women", "XY configuration", "an XY chromosome", "genetically male", "I was 46XY", and a few longer ones such as "I think my chromosomes are 46 XY but I can't remember so I must write it down next time!")
An hour-long play (BBC Radio 3, 5 November 2003) by Emma Donoghue (http://www.emmadonoghue.com/writings.htm) about a 13 year-old Northern Irish girl who discovers that she has AIS. Didn't involve AISSG in any way but mentioned here for general interest.
On 3 Dec 2003, three AIS members of our Dutch sister group AISNederland and their families took part in a TV discussion AVRO's Vinger aan de Pols Interseksualiteit. Doctors had warned the group against taking part in such media ventures, but it was very well handled and created a lot of interest. As a result of the broadcast many affected women said that it had enabled them to speak about their condition for the first time and the Dutch group gained 40 new members, many of whom had been avoiding medical care. In 2006 one of the participants, by now aged 20, and another young woman took part in another TV programme (which can be viewed via the AISNederland web site).
In Nov 2003 we posted a 'call for participants' on our Announcements page on behalf of Stephen Kerry, a PhD candidate at the University of Newcastle, Australia. He was undertaking A Study of the Social Lives of People with Intersex Conditions in Australia and sought Australian participants. The purpose was to explore the social lives, identities and relationships of people with intersex conditions in Australia.
There were to be two 'interviews' with each participant (in person, or by phone, or via audio-tape or in writing) three months apart. The first interview would ask open-ended questions about their social lives, identities and relationships. The second interview would allow them to reflect upon earlier responses. Stephen's supervisors were Dr Kevin Markwell (School of Social Sciences, University of Newcastle, University Drive, Callaghan NSW 2308. Email: Kevin.Markwell@newcastle.edu.au. Phone: l 61 2 4921 6573) and Bethne Hart. The study was completed in 2005 and Stephen's thesis, now titled Are you a Boy or a Girl? Contesting the Uncontested: Sex and Genders, can be found here.
Dr. Sarah Creighton (Cons. Gyn., UCLH, London) organised a 1-day interdisciplinary conference titled Intersex on 29 Jan 2004 at the Royal College of Obstetricians and Gynaecologists, London (www.rcog.org.uk/meetings) as a follow-up to the Intersex in the New Millennium conference the previous January (see earlier). An AISSG UK representative gave a presentation on 'The Patient's View'. An article, Unnatural Selection, by Anjana Ahuja in The Times (2 Feb 2004) reported on the conference (www.timesonline.co.uk/article/0,,8123-986519,00.html).
The member of our German sister group (XY-Frauen) who gave a talk in Pisa (see earlier) took part in a conference, 5-6 March 2004, at Martin Luther University of Halle-Wittenberg (formerly East Germany) on Intersex in Children (http://www.medizin.uni-halle.de/kkc).
She reported afterwards:
It was an excellent 2-day event in three parts: Part 1 was looking at the phenomenon from different angles, including presentations of intersex historically with Greeks and Romans, an ethnologist's presentation (she is doing a doctorate on it and has interviewed most of the German group - she got the organisers to invite me) and also a lawyer looking at the legal implications of surgical intervention in children. Part 2 was "What is technically possible?" and Part 3 was "What is the right thing to do?" with me being allowed to kick off. A 5-alpha [reductase deficiency] friend who was butchered in childhood also spoke, as did a psychologist. A lively discussion, chaired by H. Meyer-Bahlburg of Columbia Univ., N.Y., followed. What particularly struck me was the humanity and warmth with which most of the East German medics spoke of their patients. There was a complete lack of "deities in white" haughtiness in their manner.
Representatives of the UK (AISSG UK), German (XY-Frauen) and Dutch (AISNederland) support groups attended an international conference Intersex: From Gene to Gender in Lübeck, N. Germany, 1-3 April 2004. It was organised by Dr. Olaf Hiort (paediatric endocrinologist) and colleagues from the Lübeck University Clinic for Paediatric and Adolescent Medicine. Dr. Hiort works closely with the German support group XY-Frauen and often attends their group meetings. There were speakers from many specialties, ranging from molecular genetics to psychology, medical ethics and patient support; and lots of talk about inter-disciplinary care. See http://www.forschergruppe-intersex.de and http://www.network-is.de.
UK group members (two half-sisters aged approx 6 and 16 yrs who have AIS
- they have the same mother - and their fathers, and an adult intersexed woman
in her mid-20s) featured in a documentary called Secret Intersex made
by WagTV (producer Nick Godwin) for the UK Channel 4 'Equinox' science series.
It was screened on 5 April 2004 at 9 pm on Channel 4. See http://www.channel4.com/health/
microsites/H/health/magazine/sex/health_intersex.html or http://www.channel4.com/health/microsites/0-9/4health/body/gen_intersex.html.
A month or so earlier, on 29 Feb, the Sunday Telegraph had published an article about the two families, titled We are Not What we Seem. See AIS in Articles/Books for access to the article.
In Sept 2004 film producer/director Antony Thomas sought the UK group's help with a proposed documentary for HBO and Channel 4. He had a couple of adult intersexed people willing to take part; Spanish athlete Maria Patino (María José Martínez Patiño) - see here for her story - and Max Beck (see Tamara Alexander's article "Silence = Death" in the book Intersex in the Age of Ethics edited by Alice Dreger), and was seeking "contact with parents who are raising a child with AIS in a thoughtful and compassionate way; who are making the child proud of who they are and deferring choices until the time that the child is ready to make the decision". Unfortunately we couldn't get any UK parents to talk with him.
Middle Sex was screened on UK's Channel 4 on Thursday 26 May 2005. María and Max were the only intersexed people featured, in a film that merely touched on intersex "en passant" to illustrate the spectral nature of biological sex as a foundation for exploring gender dysphoria (i.e. transsexuality, transgender) at great length. So why did they call it "Middle Sex" if it was about people seeking to transition from one sex to the other? The accompanying Channel 4 web pages are probably more useful than the film from the intersex viewpoint (go to http://www.channel4.com/health/microsites/M/middle_sex/index.html and click 'Intersexuality' link at the right hand side).
In early August 2005 there was a week of Gay Pride activities in Stockholm, Sweden, during which AISSG-USA member Jane Goto, who also works for ISNA, gave a talk on Intersex and Identity Politics (Wed 3 Aug). To accompany this, a Swedish newspaper Kom Ut presented an article called Beyond X & Y in which Jane discusses progress and problems over the last 10-12 years.
In October 2005 members of the UK support group helped to review an 'e-learning' course on intersex being developed by Berlin-based Erwin J. Haeberle. The course is now online (see 'Other Intersex Sites' on our Links to Other Sites page).
The member of our German sister group (XY-Frauen) who has given talks at medical conferences on a number of previous occasions was invited to take part in an Intersex Consensus Meeting in Chicago (27-31 Oct 2005). This was jointly organised by the Lawson Wilkins Pediatric Endocrine Society (LWPES) and the European Society for Paediatric Endocrinology (ESPE). The aim was to assemble about 50 international experts, not to present scientific papers on their research or clinical findings, but to form six 'working groups' to discuss specific sets of practical questions on intersex and its management; with the view to coming up with a consensus view on how best to address some contentious medical, surgical and psychosocial issues. See here for the agenda.
Each working group covered a general topic relating to intersex and had two coordinators. There were an additional 5-6 members per group, experts in the particular topic of that group. Each group had six specific questions that they were asked to work on (including literature searches prior to the meeting). The XY-Frauen group member was in Group 5, which covered questions relating to Psychosocial management of patients with intersexuality and related conditions. The meeting was required to produce a final draft consensus document after three days of deliberations and which was to be submitted for publication simultaneously in a USA and European journal.
Dr Garry Warne told us (March 2006): "The consensus guidelines manuscript from Chicago has just been submitted for publication. It has some very useful material in it and I think it will be helpful." In early May 2006 Prof. Ieuan Hughes sent us a copy of the final Consensus Statement published in Archives Diseases in Childhood (April 2006). It was also published in Pediatrics (August 2006). In June 2006 the support group representative sent us a personal report giving her view of the meeting. The conference was important in setting standards for improved care of intersexed patients within a multi-disciplinary clinical context, including recommendations for truthful disclosure. A new system of terminology based on the term 'Disorders of Sex Development' also emerged from the conference. Unlike the clinical advances advocated, the teminology has proved controversial in some quarters (see the Debates/Discussions page).
A UK group member in Israel, who started setting up an Israeli support function in 2003, liaised with Dr. Nessia Nagelberg (children's psychologist) and Dr. Naomi Weintrob (paediatric endocrinologist) to stage a conference titled Intersex - Controversies, Trends, Innovations on 9 February 2006 in Tel Aviv.
Around 80 delegates were invited but in the end 240 attended, including five intersexed people. Clinicians made presentations, including guest speaker Dr. Ian Aaronson (urologist, South Carolina) who started the North American Task Force on Intersex, NAFTI (see Announcements page and select '23 Feb 2000'). A rabbi and two intersexed people (the founder of the Israeli support group and the chairperson of the Dutch support group AISNederland) also spoke.
As well as raising clinical awareness, the conference also resulted in more intersexed people in Israel making contact with the fledgling group there, such that the group was able to hold a meeting for adults in March (and for parents in May).
In March 2006 Sarah Plater, an undergraduate student at City University, London, emailed us for help with her degree project, as follows:
I am looking to do a few case studies on the experiences of people with AIS and CAH, and was hoping you would give people that have contacted your site the opportunity to have their story told to a wider audience. I would be taking the angle that such conditions have traditionally been handled insenstively and that although treatments are less drastic now than they once were, more care needs to be taken when deciding the right course of action, and the use of medical photographs needs to be justified. I will also be highlighting the fact that it is inappropriate for lecturers to be passing on their belief in the success of surgery on intersex babies to over 70 students each year, when sufferers of these conditions often regret that the decision was taken out of their hands. I feel a more balanced approach is necessary.
The piece is timed to coincide with the one day symposium on intersex conditions to be held in Turkey in May this year [see later on this page], where the main topic for debate will be the use of surgery, as well as presenting new research and results on a whole host of intersex conditions. I am aiming for a brief overview of the history behind today's approaches and the main players (i.e. John Money / Milton Diamond etc), and investigate anecdotal evidence from people who feel their treatment could've been better. I want a balanced piece that summarises how we stand in regard to our treatment of intersex nowadays, and where we can progress from here.
We helped by proofreading some of her text. Her final document is available here.
Members of our Italian sister group will take part in an International Meeting on Anomalies of Sex Differentiation in Rome on 24-26 April 2006 (see http://www.rome2006meeting.com/ or http://www.ipospadia.it/roma/index.htm/. They will present a poster outlining the difficulties many patients have in obtaining information and support, the benefits of peer support, and the importance of doctors and support groups working together.
A TV portrayal of AIS that was as ridiculous as the 1998 ER episode took place on 20 February 2006 in an episode called Skin Deep of the US hospital drama series 'House' (featuring Hugh Laurie of Black Adder fame as Dr. Gregory House). You'd have thought that seven and a half years after the ER episode (discussed on Debates/Discussions page), TV production companies like Fox would have learnt to do a bit more background research before airing such stuff. One can only assume they go out of their way to present as distorted a view as possible. It was screened in the UK by Channel 5 on 13 April 2006 (House, Series Two, Episode 13).
An article in The Sunday Times 'Culture' section on 30 April 2006 discussed the general proliferation of TV hospital dramas under the title Doctor, doctor, I keep catching new medical shows. It summed up House quite succinctly as follows:
The formula for House involves mistakes as a matter of course. Most episodes are based roughly around the following outline: patient comes in, Vicodin-addict House diagnoses treatment, patient's condition deteriorates, House diagnoses another treatment, patient gets better but then becomes critical. House saves patient at the last second and patient thus has no problem being insulted - possibly racially - by the man who saved his life.
We provide here the relevant part of the script, in which you'll notice that the only term given for the patient's medical condition is the archaic and immensely stigmatising term,"male pseudohermaphroditism". However Channel 5 did agree at short notice to include a link to our website in the episode guide on their 'House' web page. You can also read ISNA's critique of the episode here.
The UK group member based in Germany (and active in XY-Frauen) who has given talks at a number of medical conferences (Pisa, Halle, Lübeck, Chicago - see earlier) also gave a talk at an Intersex conference in Istanbul, Turkey, on 1 May 2006. Her presentation was titled Ways to Happiness with an Intersex Diagnosis. See here for a poster advertising the conference and giving details of the speakers and see here for details of the scientific programme. Dr Hüseyin Özbey who organised the conference is setting up a web site covering Turkish intersex issues.
An episode of the BBC1 TV hospital drama series 'Casualty, 'screened on 6th May 2006, featured a storyline about a girl with PAIS. We were alerted to this a few days later by a man in Belgium who emailed:
I wondered if you were instrumental in the instigation of part of the episode of 'Casualty' (BBC1) about the young PAIS patient. It was certainly an eye opener for the uneducated (I'm a bit dated, from 1954 when school, or other education, didn't stretch that far). In researching PAIS I came across your support group website. I think, as with anything, education is the main thing to help everyone, affected and unaffected. I hope the above mentioned episode helps the cause of all AIS affected people!
The issue of AIS seems to have been well handled, judging by acounts (see here) of what happened in the episode from two correspondents (one being the guy from Belgium). This is in contrast to coverage of the subject in episodes of 'ER' (see our Debates/Discussions page) and 'House' (see above).
The UK group member based in Germany (who talked at various conferences mentioned earlier) also made a presentation at another conference From Gene to Gender - 2nd International Symposium on Disorders of Sex Development (DSD) in Lübeck, N. Germany, 31 Aug - 2 Sept 2006. See http://dsd2006.abstract-management.de/program/.
Her talk was on the second day in a section titled 'Consequences of Chicago Conference 2005 - Patients' Perspectives'. She sent us the abstract for her talk (restricted to one page for publication in the conference booklet) and a copy of her actual presentation.
The Afternoon Play at 14:15 on Radio 4, Thu 23 Nov 2006, was titled None of the Above. It comprised three 15-minute linked plays by Christopher Green (Director Claire Grove) "about sex and classification.... about people born neither female or male but somewhere in the middle and those who believe they've been assigned to the wrong sex.... featuring the stories of a consultant surgeon retiring from work carrying out gender reassignments, a transsexual married couple, and a barman born a woman". The broadcast is available for a limited time at http://www.bbc.co.uk/radio/aod/radio4_aod.shtml?radio4/afternoonplay_thu.
ISNA sponsored a DSD Symposium (13 - 15 October 2006) as a mini-conference, held within the Gay and Lesbian Medical Association’s annual conference in San Francisco. Members of AISSG-USA made presentations at the symposium. See www.isna.org/dsdsymposium2006 for details.
In March 2006, a group member emailed: "My friend tells me that an AIS patient shows up in another medical series: Grey's Anatomy, season 2, episode 13: "George treats Bex, a young teen hermaphrodite." Doesn't sound good, does it?"
She was referring to the US screening on ABC (on 15 Jan 2006) and we received derogatory reports on the epsiode from members of the US AISSG. So in April 2006 a UK group member emailed Five TV (who have the broadcast rights for the UK and were screening season 1 here at the time) saying we feared a sensationalistic approach could be traumatic for girls/women who know/suspect they have an intersex condition. She requested that they should at least publish our web address when they come to screen the above episode. She also gave a brief educational overview of intersex and pointed the Five TV people to her story on our site.
Out of the blue, a year later, she received a notification from Five TV saying "We will post the web address for the AIS Support Group on the Five website under the Episode Guide for Grey's Anatomy, episode 13, in advance of transmission." The broadcast date for the episode is 25 March 2007 at 21:00 and episodes are available for download from www.five.tv a week before the TV transmission date.
In May 2007 we received a request from Cameryn Garrett, as follows:
I am a graduate student at the University of Melbourne in Australia, currently completing the degree of Master of Women's Health. For my research project (8000 words long) I would like to investigate the experience of Androgen Insensitivity Syndrome (AIS).
After reading the available academic literature on AIS I have concluded that understanding of AIS is limited. In particular, few articles provide in-depth information about individuals' own personal views about their AIS condition. I acknowledge your concerns about the ways in which the media misinterprets AIS, and it is my goal to draw on the stories presented by people living with the condition as a way of contributing to the public education. For my research I plan to study these accounts to learn what is important about AIS from the 'inside'. My visits to your website suggest to me that your website encourages a strong sense of community and support, and that people are guided to manage AIS despite the sometimes inadequate assistance available.
Noting the copyright information on your website, I am writing to ask permission to copy to my personal (password-protected) computer the collection of accounts on your website up to April this year (2007). In my written work I intend to use pseudonyms for the people whose stories I discuss, and would endeavour not to identify them further. I will not make any attempt to contact the people concerned. I will treat their stories and the aims of AISSG with respect. When my work is finished, I would be very happy to send you a copy of my assignment.
AISSG has a copy of Cameryn's final thesis (Being an XY Female) dated October 2007.
The Oprah Show is a popular talk TV show in the US. They have a book club, and the club had been reading Middlesex (2002 novel by Jeffrey Eugenides featuring a character with 5-alpha-reductase deficiency - see the AIS in Books/Articles page). This got them interested in intersex and on 21 Sept 2007 they aired a seven minute discussion featuring 22 year-old Katie Baratz (AIS) and her mother Arlene Baratz (both AISSG US members), Lynnell Stephani Long, Hida Viloria, and Dr. Alice Dreger (see the AIS in Books/Articles page). Following this there was a discussion of Middlesex with Jeffrey Eugenides.
See The Oprah Show website for information - a 30-second clip from the show, articles featuring a) Katie and other participants, and b) Alice Dreger (and a short video in which she explains intersex), plus an account of Oprah's interview with the author of Middlesex.
See also Orchid ladies test gender perception, an account given to the Wisconsin State Journal by another AISSG US member with AIS as a tie-in to the Oprah show and an interview with Katie Baratz on the website of her old school/college.
On 12 Aug 2008 members of AISSG US appeared, together with AIS expert Dr. Charmian Quigley, on a Medical Mysteries (ABC Primetime) show, A Woman.... Wth Male Chromosomes?. See http://abcnews.go.com/Health/MedicalMysteries/story?id=5465752&page=1 for an associated article (Women With Male DNA All Female) and accompanying video clips, Woman With a Man's DNA at http://abcnews.go.com/Video/playerIndex?id=5544655, and Medical Mystery: Women With Male DNA at http://abcnews.go.com/Video/playerIndex?id=5563139.
On 05 Dec 2008 Katrina Karkazis, author of 'Fixing Sex', and intersexed women Katie Baratz and Janet Green took part in Intersexuality, a broadcast of WYNC's Leonard Lopate Show. See http://beta.wnyc.org/shows/lopate/2008/dec/05/intersexuality/.
After the Caster Semenya issue hit the headlines in Aug 2009 (18 year-old S. African medal-winning runner accused of not being a woman), various media outlets (newspapers, magazines, TV and radio) started talking about intersex. The newspaper and magazine coverage is mentioned on our AIS in Books/Articles page.
After news broke in early Sept that initial "gender tests" had indicated Caster may be a "hermaphrodite", BBC Radio 4 hurridly put out a short piece on their early morning Today programme (11 Sept) in which they interviewed a general cosmetic surgeon. He was introduced as a gender reassignment surgeon but was clearly not experienced in the clinical management of intersex conditions, and judging by his website was, as one group member put it, "a fool making money out of nose and boob jobs". He spoke using out of date terminology ("pseudo-hermaphrodite") in relation to Caster and agreed when the presenter commented that, "It really is a curse then, to have a condition like this".
The UK support group took steps to redress the 'doom and gloom' message pedalled by this so-called 'expert' and recommended that the BBC should contact Dr. Gerard Conway, Consultant Endocrinologist at the Middlesex Centre (adult multi-disciplinary intersex clinic) at University College Hospital London. Two group members (a mother and her 20 year-old CAIS daughter) came forward and were interviewed, together with Dr. Conway, for another Today broadcast (18 Sept), put togther by a medical journalist and presenting a much more human and sensitive view.
The Mirror newspaper had also got hold of the cosmetic surgeon and wanted to print some of his more 'shock horror' quotes in a box (supposedly containing factual data) alongside a personal story submitted by a UK group member, Sarah Graham. Sarah contacted the support group when she saw what the paper wanted to print, and between us we persuaded the Mirror to ditch most of the silly quotes in favour of some useful information. We did notice though that one of the surgeon's remaining quotes which, at the draft review stage, had been just "....this horrendous experience", had evolved, in the final published version, to become .....this shocking, horrendous experience". Ah well, we tried.
Sarah subsequently gave an extended interview (she talked to Fi Glover) on BBC Radio 4's Saturday Live programme on 26 Sept which was very well executed and received.
Our media experience with regard to the Caster Semenya issue prompted us to prepare a Media Advisory which we displayed on the site.
On 27 Sept 2010, UK group member Sarah Graham spoke in a BBC Radio 3 series called A Letter to My Body. It was rebroadcast on 06 June 2011. The following is from the BBC website:
A Letter to my Body is a series of essays in which five thinkers, artists and writers ask themselves how they relate to their own bodies. In this first essay Sarah Graham, who is now a successful therapist and addictions counsellor, explores her at times turbulent relationship with her body. From the age of eight Sarah was given ongoing medical treatment for a disorder of sexual development - but she only learned the real nature of her diagnosis at the age of twenty-five when a gynaecologist finally revealed the truth: that she is an intersex woman. She has XY chromosomes. She had never questioned her sex and had lived her life as a woman. Doctors had even shielded her parents from the truth about her gender. The shock of the revelation led Sarah on a path of depression and addiction which nearly killed her. However she has gradually rebuilt her health and her self esteem. In this essay she makes peace with her body and questions our society's polarised expectations of gender.
(Note how the writer of the above summary exhibits the (common) confusion between the terms sex and gender. I don't think Sarah would say there has ever been any doubt about her gender, her 'being in the world' as a woman. It's her reproductive biology, usually referred to as one's 'sex', that's unusual.)
Also available on YouTube (in two parts).
An article in the Sydney Morning Herald (03 Nov 2010) titled Coming to grips with an intersex adventure highlighted a documentary film, Orchids: My Intersex Adventure, made by Australian woman Pheobe Hart who has AIS, and which was being premiered at the Brisbane International Film Festival. See also the site for the film itself.
In Sept 2010 Jeanne Nollman, the serving President of AISSG USA, took part in a Mystery Diagnosis show (Season 9, Episode 9) on the Discovery Health Channel. The episode was called The Woman with Unusual DNA. Jeanne said: "It is a story about me and how I found out I had Swyers Syndrome. They did a fairly decent job. I also did some other media work for The Learning Channel which will air in a few months."
During 2010 members of AISSG UK and USA and some medical professionals were filmed by the BBC for a documentary originally co-sponsored by the Discovery channel (which was then sold to the Oprah Winfrey Network - OWN). A US version of the film, titled The Truth of My Sex (with edits and narration supplied by OWN, and mainly US participants) was broadcast in the US at 8 and 11 pm on Tues 06 June 2011 and again at 2 am on Wed 08 June (see http://www.oprah.com/own/tv-schedule/index.html?date=2011-06-08). The US version can be viewed at http://www.megavideo.com/?d=A04WT7XU.
A UK version, titled Me, My Sex and I (with British narration, and additional British participants) was broadcast at 10:35pm on BBC1 on Tues 11 October 2011. A short second film, also on intersex/DSD, was made available on the BBC website. A UK group member who participated in the main documentary explained that the supporting film "focuses on PAIS as a specific area of DSD and looks at my story as one possible example, highlighting the hardship and positivity, family and society" (see http://www.bbc.co.uk/programmes/b0139jv4 for information).
There had been an earlier date for the UK broadcast, which had to be postponed at the last minute in favour of a programmme about riots in London, and the publicity people supplying the supporting text (e.g. on BBC website, in newspaper TV listings) made the same old mistake about 'sex' and 'gender', announcing things like: "People born with ambiguous genders tell their stories". Gender is largely a socially constructed attribute that develops through childhood/adolescence and the term was introduced by 1970s feminists specifically in order to separate biology (sex) from "presenting oneself as a girl/woman in society" (gender). How can you be born with a gender, let alone an ambiguous one? As Iain Morland, social researcher in intersex, points out, it's like expecting a midwife to declare: “Well done my dear, a nice healthy baby… and it’s a Conservative!”.
It's the same problem as newspapers talking about "gender testing" in sport. Gender is not something you need to test scientifically. If you want to know someone's gender you either make a judgement by observing their appearance and behaviour in social situtations, or if there's any doubt... and if you really must know... and if you can do it tactfully... you just ask them!
They also got the terminology wrong, throughout the documentary and supporting material, by using the term Disorders of Sexual Development (it's actually Disorders of Sex Development). A subtle difference, but one which the US originators of the term gave a lot of thought to ('sexual', they reasoned, carries connotations of sexual orientation and/or practices) and which shows up a general deficiency in the DSD terminology; that as soon as it's introduced people start misquoting it (see also Debates/Discussions). But apart from this, the BBC seem to have done a good job!
In June 2012 the BBC emailed us as follows:
We are very pleased to tell you all that we have now managed to put our programme 'Me, My Sex and I' online, in full, as an archive resource for the public to view. It has taken so long because there are copyright issues, broadcast priorities and technical issues that we needed to sort out, but we have persevered, as the public interest case was overwhelming. You can find the programme on the BBC website by either searching “BBC Me My Sex and I” or clicking on this link: http://www.bbc.co.uk/programmes/b0139jv4.
Unfortunately, at the moment you can only view the programme if you’re in the UK. This is because the programme is still being sold to broadcasters in other countries - last year it went to 10 countries including South Africa, Japan and China, and this year has also been shown in Poland, Sweden, Brazil and Canada - which is very good news for spreading awareness. When the worldwide sales rights run out, we will endeavour to extend access globally to the film on our website.
A workshop/conference, Disorders of Sex Development: New Directions and
Persistent Doubts, is being staged in Bologna, Italy on Fri 14 and Sat
15 October 2011 (programme available here).
The Italian AIS support group (AISIA - Associazione Italiana Sindrome Insensibilità
Androgeni) has arranged a follow-on session, on Sun 16 Oct, for women with
AIS and similar conditions to meet and talk with two clinical psychologists
with experience in this area (Dr. Lih-Mei Liao from the UK, and Dr. Franco
D'Alberton from Italy) about sexuality and psychological aspects.
German Film about Intersex. Website about a German film Das Verordnete Geschlecht (English text available). The woman who took part in this film was also featured in an article on intersex Frau sein ist ein Lebensgefühl. Es gibt Männer. Es gibt Frauen. Und ein drittes Geschlecht:ABC Broadcast Zwitter that appeared in the Sept 2002 issue of the German magazine MAXI.
Intersexed Speaker Raises Awareness at Michigan State University. Report on a talk by Cheryl Chase of ISNA.
As the UK group was getting up to speed during the 1990s we managed to get announcements posted in the following places. This may help other fledgling groups to see what sort of publications are willing to help with publicity:
See also AIS in Books/Articles.