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This page describes how AIS and related conditions have been covered in non-medical printed matter (articles and books, including newspapers and popular magazines) and on web sites. It shows how writers outside the medical profession (social scientists, social psychologists, journalists, patients) perceive AIS and similar intersex conditions. Heavy-duty articles in medical and other academic journals are, in general, not covered here (apart from a few key academic ones); references to these can be found at the foot of our pages covering specific medical topics.
For details of activities undertaken by group members that are not related to the printed word (i.e. talks, conference presentations, radio and TV broadcasts, and various other projects/campaigns) please refer to the Raising Awareness page.
Those articles/books to which the support group and/or its members contributed (or where they took part in subsequent discussions about the work) are indicated with an asterisk (*) in the page index below.
Since the 1950s there have been many papers in medical journals on the clinical features, endocrinology and genetics of AIS, often under its old name, Testicular Feminization Syndrome (Testicular Feminisation Syndrome). It is often described there as a "well-known", or "well-studied" condition, but in spite of this the condition was virtually unknown to the world at large (and to many diagnosed AIS patients!) until the early/mid 1990s. Until then, most of the research (and hence most of the published material on AIS) had been on the aspects that doctors are interested in and which is only of help to the patient in as much as it aids the diagnosis process. The psycho-social aspects of AIS (truth disclosure, effects of secrecy, lack of psychological counselling etc.) and the outcome of various treatments for vaginal hypoplasia from the patient's physical and psychosexual point of view, had been very much under-represented, or even virtually ignored, in the medical literature. Most of the published literature had therefore been of little practical use in helping patients deal with the condition and, moreover, had been written on the erroneous assumption that patients would never read it.
At the time the support group was formalized in the early 1990s there had been a few papers in the literature devoted to the question of truth disclosure. Their listing below does not necessarily indicate that the support group endorses what they say. Some of them are good; some of them use some rather unfortunate language. They are mentioned here to indicate what we were able to find at that time:
In the past, patients' requests for the full details of their condition and to be put in touch with other patients would often be met by evasive answers. Most patients would have no choice other than to hot-foot it round to their nearest medical library or academic bookshop; where they could read about themselves being "genetic males" (note the use of 'male' as a noun)...., about being "male pseudohermaphrodites" or "hairless pseudo-females", about having "eunuchoid extremities" and having body parts (e.g. nipples) described as "sexually infantile"...., about having been "castrated"...., etc., and could see pictures of their fellow intersex patients, standing naked against a measuring grid with just their eyes blacked out.
We have to mention a lone voice in the wilderness here, in the form of Dr. Garry Warne, a forward-thinking paediatric endocrinologist at the Royal Melbourne Children's Hospital in Australia who has had a long-standing and compassionate interest in AIS, and who, way back in 1986, had prepared a set of user-friendly typewritten 'Notes for Parents/Patients on AIS', see below.
In spite of the stigma caused by the way in which our condition has been presented in the medical literature, it has often been the only way in which many patients could get proof that they were not the only person on the planet affected by this 'unspeakable' condition. At the time the UK support group was formalised in the early 1990s, a few enlightened researchers (mainly social scientists), who were starting to evaluate the psycho-social aspects of intersex conditions like AIS, were pointing out that these conditions were "humanly possible but socially unthinkable".
In 1990, social psychologist Suzanne Kessler reported that:
There are no published studies on how these [intersexed] youngsters experience their condition and their treatment by doctors.
The UK support group has prepared a precis of her article (The Medical Construction of Gender: Case Management of Intersexed Infants, published in Signs, the Journal of Women in Culture and Society, Autumn 1990) from which the above quote is taken. Click here to see the precis, or here to see the original article.
(See also Lessons from the Intersexed below.)
....As it happens, the physiological reality [that a vast range of external sexual characteristics can occur] is almost unknown outside medicine - and that fact alone is symptomatic of a society unwilling to accept the truth about its members.
In 1994, Morgan Holmes published an important article Re-membering a Queer Body, about the social attitudes that underpin the treatment of infants with 'ambiguous' genitalia. See our Debates/Discussions page for a transcript of the article and some subsequent discussions about it. For other, more recent papers by Morgan Holmes see references at foot of Genital Plastic Surgery and Obtaining/Facing Diagnosis pages. Morgan Holmes has her own website (see Links to Other Sites page).
"A Mother's Story" in ALIAS No. 7
"Learning by the Book" in ALIAS No. 9
"Reading the Words" in ALIAS No. 9
"Hearing the Words" in ALIAS No. 9
"Saying the Words" in ALIAS No. 9
"The Power of Language/Culture" in ALIAS No. 9
The first occasion on which the concerns of an AIS patient were heard in the medical literature was probably the anonymous article Once a Dark Secret in the British Medical Journal (Feb 1994) in which a young woman talked about the secrecy that had surrounded her condition. This prompted two response letters in the April 1994 issue of the journal. Click here to see a transcript of the article followed by the two response letters.
A few years after the UK support group became formalised, an article titled Medical Ethics and Truth Telling in the Case of Androgen Insensitivity Syndrome by Anita Natarajan appeared in the Canadian Medical Association Journal, 154 (4), 15 Feb 1996, and caused a lot of negative reaction within the group. See Debate/Discussions to read the journal article and subsequent discussions.
In the mid-late 1990s the concerns of AIS patients, the existence of the support group, and quotes from its members started to be discussed in both medical articles and mainstream books.
Robert Pool's book Eve's Rib - Searching for the Biological Roots of Sex Differences (Crown Publishers. New York, 1994) was written before the support group became known or started to wield any influence, but it does contain a quite detailed account of the biology of AIS using the story of an Olympic athlete Maria Patino (María José Martínez Patiño) who has AIS. The support group used this as the basis for an article called Maria's Story to send out to enquirers since it seemed to be good material for helping present the biological facts to a teenager. Click here to see a transcript of 'our' article.
Drs. Garry Warne (Royal Children's Hospital, Melbourne, Australia) and Milton Diamond (Pacific Centre for Sex and Society, Hawaii) have addressed the concerns of intersexed patients in a number of research papers (see Research Studies and Genital Plastic Surgery).
Dr. Warne has also written a fairy tale called The Baby Who Was Different to help parents explain unusual genitals to a very young child. Click here to see a transcript of the fairy tale. He and his colleagues have also produced videos to help families to cope with this sort of situation.
In around 1996 Dr. Warne worked up his Notes for Parents/Patients on AIS into a proper booklet which was published in 1997 and is available from the UK support group (see Group Literature). See also Raising Awareness for details of Dr. Warne's involvement in support for patients with AIS and related conditions.
Chrysalis, the Journal of Transgressive Gender Identities, published a special 'Intersex Awakening' issue (Vol 2, No. 5, Fall 1997/Winter 1998). It was guest edited by Cheryl Chase and Martha Coventry and made up of articles by early intersex activists and academics such as Morgan Holmes ('Is growing up in silence better than growing up different?'), Alice Dreger ('Doctors Containing Hermaphrodites: The Victorian Legacy'), Suzanne Kessler ('Meanings of Gender Variability: Constructs of Sex and Gender'), Tamara Alexander ('Silence = Death') and others. Available here or at http://www.isna.org/drupal/chrysalis. Some of the articles also appear in Intersex in the Age of Ethics, edited by Alice Dreger (see below).
In early 1998 a Canadian CAIS woman wrote an article about truth disclosure for an obstetrics and gynaecology journal.
"What Kind of Outsider?" in ALIAS No. 13, Autumn 1998
A short story called Orchids (see http://pages.prodigy.net/sullydog/archives/astory18.htm) was written in 1998 by Karen Traviss (a UK-based journalist and public relations director who writes science fiction as a hobby) about a woman who gives birth to a CAIS baby and about the babys subsequent progress to adulthood. Karen is no longer at the email address quoted in the article. She is now at email@example.com.
Suzanne Kessler's book Lessons from the Intersexed published in 1998 (Rutgers University Press, ISBN 0-8135-2530-6) discusses AIS, the support group, and includes quotes from group members. Recommended reading! Some excerpts from the book follow.
Kessler outlines the evolution of the Intersex Society of North America (ISNA) and other groups, then says (on p. 79) :
A self-help group in England, originally for parents of children with androgen insensitivity syndrome, eventually began to attract women with androgen insensitivity. The Androgen Insensitivity Syndrome Support Group (AISSG) published its first newsletter, ALIAS, in early spring 1995 and listed goals similar to ISNA's: to reduce secrecy and stigma surrounding AIS, to develop enlightened support within the medical community for young people with AIS and their parents, and to provide a network of information (including personal contacts) for those with AIS. By mid-1996, Sherri Groveman, a member from the United States, had publicized the existence of AISSG by writing directly to over 300 physicians and scores of organizations and by posting notices in medical journals. The result was several new calls every week.
On p. 97 (after talking about parents not being as upset about variant genitals as doctors like to make out, especially in the face of other medical problems in some intersexed children) she says:
One might argue that parents express so little concern about their interesexed children's genitals because that part of the problem was already taken care of by the surgeons. It is at least possible, though, that some parents considered their child's genitals the least of their problems, in spite of all the physicians' allusions to the parents' embarrassment. How astute are physicians in assessing what is of greatest concern to their patients and families? Women diagnosed with androgen insensitivity syndrome (AIS) report being more preoccupied with their lack of pubic hair, their memories of having been lied to and put on display for medical students, and their difficulty in talking to relatives who they suspect might also have AIS, than what they call "non issues" such as XY chromosomes, testes, and infertility, the features of their condition focused on by medicine and psychology.
She discusses how the rather aggressive approach of some other intersex groups has only had limited success in influencing the medical profession, and in footnote 26 (to a comment on p. 86) says:
Endocrinologists and gynecologists who attended The Royal Society of Medicine symposium on androgen insensitivity syndrome (AIS) in 1995 [see History of the Group] wrote letters praising the presentations of representatives from AISSG and indicating how impressed they were with the organization's aims (ALIAS No. 3, Winter 1995). This contrasts with the cold shoulder that representatives of _______ [another organisation] received at a Mt. Sinai School of Medicine conference on Pediatric Plastic and Reconstructive Surgery 16 May 1996.
On p. 123 she says:
Members of the Androgen Insensitivity Syndrome Support Group have had some success in getting prominent endocrinologists to consider the organization's recommendations about a different management philosophy based on a more compassionate understanding of their patients and a more radical formulation of gender. One physician described their literature, which was critical of the medical management of intersexuality, as "remarkab[ly] illuminating". Even after expressing some qualms about accepting a third gender (which AISSG does not advocate), he ends with: "What is certainly gratifying about these writings is the trend towards fully [sic] and more open discussion of the complex issues involved in abnormal genital development".
In footnote 96 (to a comment on p. 129) she says:
At the 1996 Lawson-Wilkins Pediatric Endocrinology Conference, Charmian Quigley, a highly published [US-based] researcher and pediatric endocrinologist, gave credibility to positions taken by the Androgen Insensitivity Syndrome Support Group by distributing the group's literature.
Alice Dreger's book Hermaphrodites and the Medical Invention of Sex (Harvard University Press, 1998) also discusses AIS and paternalism (truth withholding) using quotes from support group members. Recommended reading!
[Excerpts - to be added]
See also: 'Ambiguous Sex' or Ambivalent Medicine? Ethical Issues in the Medical Treatment of Intersexuality (http://www.isna.org/articles/dregerart.html) by Alice Domurat Dreger, Hastings Center Report, May/June 1998: 24-35. It may be also possible to access original article via http://www.thehastingscenter.org.
Alice Dreger has also written an article (2002) on what to expect when you are told that your child is intersexed (available via her website, see Links to Other Sites page).
1) The Winter 1998 issue (Vol. 9 No. 4) of the Journal of Clinical Ethics was guest-edited by Dr. Dreger (see above) and devoted an entire issue to the management of intersex (including an article by the founder of our US group and titled The Hanukkah Bush: Ethical Implications in the Clinical Management of Intersex).
Other articles in this issue are: Intersexuality: What Should Careproviders Do Now by Howard G. Howe, A History of Intersexuality: From the Age of Gonads to the Age of Consent by Alice Domurat Dreger, Management of Intersex: A Shifting Paradigm by Bruce E. Wilson & William G. Reiner, 10 Commandments by Helena Harmon-Smith, Betwixt and Between: The Past & Future of Intersexuality by Robert A. Crouch, Surgical Progress is Not the Answer to Intersexuality by Cheryl Chase, A Surgeon's Response to the Intersex Controversy by Justine Marut Schober, Pediatric Ethics and the Surgical Assignment of Sex by Kenneth Kipnis & Milton Diamond, For the Sake of the Children: Destigmatizing Intersexuality by Sharon E. Preves, Legal Trends in Bioethics by Heide Foster.
You can get this issue from the US publishers, University Publishing Group, by calling 301 582-2200. They take credit cards over the phone. Or you can email via: firstname.lastname@example.org. Cost is $35.00 plus ship/handle.
2) Intersex in the Age of Ethics, a book edited by Alice Dreger (published 1999) containing the above articles and others, is also available from the same publishers (ISBN 1-55572-100-1 paperback, $19.95 plus ship/handle) using above phone no. or by email at email@example.com. For further information on the book see www.upgbooks.com.
Some marketing blurb about the book:
'Intersex in the Age of Ethics' marks the first time an entire volume has been dedicated to the exploration of the ethics of intersex treatment. It could not be more timely; professional conferences, gender clinics, and the popular media are abuzz with the controversy over how medicine and society should handle intersex and intersexuals. The volume will provide some much-needed perspective. The writings approach the issue of intersexuality and its treatment from numerous perspectives, including the personal, ethical, clinical, legal, anthropological, historical, sociological, and philosophical. -- Alice Domurat Dreger.
The range of ethical issues that arise in regard to the treatment of intersex infants, children, and adults is richly representative of the clinical healthcare ethics generally. By incorporating the perspective of patients and their stories in this account, however, 'Intersex in the Age of Ethics' does more than introduce the question of healthcare ethics in microcosm. It also leads the reader to examine the effect of ethical reflection on the lives of patients.
Unlike many collections of essays, this one hangs together very well both for reading and for teaching. 'Intersex in the Age of Ethics' is a model, in both senses of the word, of what thoughtful healthcare ethics reflection can accomplish. It embodies a conceptual model of ethical reflection that leads the reader to pose the right questions and to respond to them with patients' lives in mind. And it is a model in the evaluative sense--excellent, admirable, and deserving of imitation. -- David T. Ozar, PhD, Loyola University of Chicago.
In May 1999, Dr. Peter Broks had an article on AIS called Trust Me - I'm a Patient published in 'Wavelength' (http://www.uwe.ac.uk/facults/fas/wavelength) Issue No. 23, May 1999. This is a newsletter of the BA course in Science, Society and the Media at the University of the West of England. Peter is a parent member of our group who lectures on this course and has a research interest in the public understanding of science. His (then 12 year-old) AIS daughter had grown up in an atmosphere that had been completely open and truthful concerning her AIS. The article is available as a transcript on this site.
"Dr. Peter Broks' [AIS] Study" in ALIAS No. 12, Summer 1998
Caroline Hawkridge, a UK-based health education specialist and writer, worked with the various support groups, including AISSG, in writing a book The Menopause, HRT and You, which was published on 26 Aug, 1999 by Penguin (ISBN 0-14-027261-5, £7.99). It covers HRT in young women and in women with unusual reproductive conditions. See Literature page for details of how to obtain this and other publications from the support group.
A group member told us how, a few years previously, she had made contact with the US branch of the support group:
I was reading the Sunday NY Times when I spotted an article by Angier about intersex conditions [Intersexual Healing: An Anomaly Finds a Group, NY Times, Sunday Feb 4, 1996]. It was the first time I had ever read anything in mass media regarding AIS and other conditions....It was as a result of her article that I contacted ISNA and subsequently ______ [AISSG (US) group leader] 'found' me and here I am today.....As I recall Angier's NY Times article was sensitive.
The following excerpt is from a review (UK Sunday Times Book Section, 7 March 1999) by David Bellamy of a new book Woman: An Intimate Geography by Natalie Angier (Virago):
Angier's text here is the female body, its anatomy, its chemistry, its development through life.... At last I know what little girls are made of and how they are made of it, or at least I think I do. The boring bit is that big girls are made of exactly the same things, and so are boys, whatever size they aspire to be. All of us are put together in much the same way: we consist of cells, tissues and organs. If any of these contain a certain enzyme called aromatase (and, on investigation, most do), that tissue or organ can produce one or more of the 64-strong family of female hormones called oestrogens. What is more, they can make oestrogens from a whole range of raw materials, including testosterone.....
Caroline Hawkridge tells us that:
On pages 26-35, Angier describes meeting Jane Carden, who is full of "live-wire intelligence" and "projects a dome of charisma all around her". Angier repeats Jane's story, including her painful discovery [15 years previously] of the truth in a medical library, before going on to describe how "being androgen-deaf, Jane's body took the course that a mammalian fetus will in the absence of androgens: it chose to go girl." Finally, she describes Jane's joy on discovering a support group in England after "15 years feeling like an untouchable freak". She ends with a quote from Jane: "I am the daughter my mother created. I am the woman I was meant to be."
Click here to see a transcript of the complete coverage of Jane Carden's story in Angier's book.
In contrast to the sensitive approach of authors like Angier, are the outpourings on AIS from Ms. Germaine Greer in her book The Whole Woman. What can we say, except see Debate/Discussions if you really want to see how ill-informed some people can be.
Sherri, the founder of AISSG US, told us in Sept 1999 that she was working with a friend and former law faculty colleague Julie Greenberg on a law review article on informed consent. Julie is Prof. of Law, Thomas Jefferson School of Law, 2121 San Diego Ave., San Diego, CA 92110. Email: firstname.lastname@example.org. She is author of Defining Male and Female: Intersexuality and the Collision Between Law and Biology in Arizona Law Review, Vol. 41, No. 2, Summer 1999.
Prof. Fausto-Sterling published a follow-up article (to her 'Five Sexes' article referred to earlier) called The Five Sexes Revisited in The Sciences, July/Aug 2000 (see here) and a book, Sexing the Body: Gender Politics and the Construction of Sexuality (New York, Basic Books, 2000). Anne Fausto-Sterling has her own website with links to her publications (see Links to Other Sites page).
This is the delightful title chosen by Robert Marion for his article in Discover magazine, Dec 2000. Marion, a US professor of genetics, tells how he fobbed off a Mexican AIS woman without telling her the truth. As ISNA describe it in their bibliography, "Although the patient was kept in the dark, Dr. Marion published her story for the entertainment of readers of Discover magazine". The founder of our US group had a letter to the editor published in the March 2001 edition of the magazine and a number of support group members/sympathisers also wrote to the article's author to complain (see Debate/Discussions).
The online version of the article, which seems to be titled 'Why are so many women in this family unable to conceive?', can be accessed at http://www.discover.com/issues/dec-00/departments/featvital/.
Celia Kitzinger (a professor at the University of York, UK) published an article Women with Androgen Insensitivity Syndrome (AIS) in a book (Ussher J. Ed. "Womens Health: An International Reader". Pub: Leicester: Psychological Society, 2000. ISBN: 1-85 433-308-9). The article is based partly on material from the UK AIS Support Group's newsletter, ALIAS, and focuses on psycho-social aspects of AIS.
In 2000 a group member was featured in Male, Female, Other (http://www.nerve.com/LeVay/intersex) an account by Simon LeVay of "two children, born with the outward appearance of girls, but lacking the inner passageways of either sex... They did have gonads, though: one had a boy's testes, the other had a girl's ovaries."
In July 2000, AISSG UK group invited to put forward an author to write a chapter on AIS-related issues for the new edition of an endocrinology textbook, Comprehensive Clinical Endocrinology, 3rd Edition, eds. G.M. Besser (UK) and M.O. Thorner (US). The founder of our US sister group kindly agreed to write the chapter.
The book was announced in July 2002 as follows:
I am delighted to report that Besser and Thorner's Comprehensive Clinical Endocrinology (3rd Ed.) (Mosby) has just been published and features a patient perspective chapter on AIS written by Sherri Groveman, Founder of AISSG USA.
The chapter addresses the physical and emotional needs of women with AIS and includes recommendations for treatment. While the invitation to write the chapter made clear that it was to be limited to clinical issues in Complete AIS, it addresses the global concerns of all women with AIS as well as those of other intersex individuals. In addition to the chapter on AIS, there are also outstanding intersex patient perspective chapters on CAH and Klinefelter Syndrome.
This is the first time a leading medical textbook has included recommendations for, and perspectives on, treatment written by patients. Michael Besser and Michael Thorner, authors of the textbook, write that the patient authored chapters are an "acknowledgment that patients are more knowledgeable about their diseases and, properly, are more involved in determining their care." The textbook is an exciting advancement in achieving better outcomes for intersex individuals!
In Feb 2001 the publications editor of the UK group agreed to write a chapter for a new gynaecology textbook (see Contribution to Gynaecology Textbook below).
A UK group member who works in bio-informatics wrote an article in Dec 2000 titled Paternalism Doesn't Work! Education Does discussing the pre-occupation of the medical profession with labelling people's sex and gender identity on the basis of single chromosomes and genes. You can access the article here.
On 12 May 2001, the UK's New Scientist magazine (http://www.newscientist.com) published a special issue on gender titled Gender; Why Two Sexes are not Enough. It comprised five articles (Beyond Two Sexes, Boy Meets Girl, Making Babies, The Gender Police, and Venus and Mars). A BBC Radio 4 'Today' interview (http://www.bbc.co.uk/radio4/today/) was broadcast on 10 May 2001 in connection with the articles and featured Cheryl Chase (ISNA) and Gary Bulter (a paediatric endocrinologist from Leeds, UK).
In 2001 a UK group member contributed to an article, My Doctor Lied to Me (http://www.well-aware.co.uk/news/intersex.htm) by Lisa Melton on Dr Cathy Minto's health web site (Well Aware).
A UK group member was featured in an article, The Gender Puzzle - The Worst of Both Worlds (http://www.sunday-times.co.uk/news/pages/sti/2001/10/28/stimazmaz02015.html? or here) by Christine Toomey in the UK Sunday Times Magazine, 28 Oct 2001. Also available via the Adrenal Hyperplasia Network website (http://www.ahn.org.uk). It features two people - one with CAH, the other with AIS - and discusses shame, secrecy and the controversy over childhood genital surgery. The AIS person featured is not typical (most people with CAIS identify as women). The AIS Support Group had no official input into the article and was not keen on the sensationalist titles/subtitles used, but felt that the article itself didn't turn out too badly.
A member of AISSG USA featured in an article Gender Paradoxes by Sharon Doyle Driedger (http://www.macleans.ca/xta-doc2/2003/05/26/Cover/59858.shtml) in the 26 May 2003 issue of a Canadian magazine.
A book Intersex and Identity: The Contested Self by Sharon E. Preves, was published in 2003 (Rutgers University Press). Sharon is assistant professor of sociology at Hamline University, St. Paul, Minnesota. She interviewed AISSG USA group members in 1998 and also wrote a chapter in Intersex in the Age of Ethics (see above). This text is from the jacket of her new book:
Approximately one in every two thousand infants born in the United States each year is sexually ambiguous in such a way that doctors cannot immediately determine the child's sex. Some children's chromosomal sexuality contradicts their sexual characteristics. Others have the physical traits of both sexes, or of neither. Drawing upon life history interviews with adults who were treated for intersexuality as children, Sharon E. Preves explores how such individuals experience and cope with being labeled sexual deviants in a society that demands sexual conformity. By demonstrating how intersexed people manage and create their own identities, often in conflict with their medical diagnosis, Preves argues that medical intervention into intersexuality often creates, rather than mitigates, the stigma these people suffer.
In a chapter called Seeds of Change the author has a section called Emergence of Intersex Support and Advocacy Organizations which starts:
The Turner's Syndrome Society, founded in Minneapolis in 1987, was the first known support group for people with atypical sex differentiation....
...A year later, in 1988, the mother of a girl with androgen insensitivity syndrome (AIS) founded the UK-based AIS Support Group. The UK has convened fall and spring weekend conferences since 1995, and many people from continental Europe and the United States travel to attend the UK group's meetings... [she then talks about the formation of the US, Canadian and other AIS groups, and mentions the UK group's newsletter ALIAS]...
...In 1989 the mother of a child with Klinefelter's Syndrome founded the US-based K.S. & Associates...
...In 1993 the intersex activist and scholar Cheryl Chase founded the Intersex Society of North America (ISNA). Chase initially announced ISNA's existence by publishing a letter to the editor in response to Fausto-Sterling's article The Five Sexes in The Sciences (see above). In Chase's letter, she indicated that hermaphrodites weren't mythological or fictional characters and that she, herself, was intersexed and had founded and was president of an advocacy organization for intersexuals called the Intersex Society of North America. The society Chase referred to didn't exist yet. The organization was actually formed out of her letter to the editor. Chase was hopeful that by acting as though the organization was already in place, she would find others who had bodies and medical histories like her own. In the signature line of this momentous letter, Chase listed a post office box for ISNA, and it soon began filling with mail from other intersexuals around the world. ISNA published the first issue of its newsletter, Hermaphrodites with Attitude, in the Winter of 1994, started bimonthly support groups in January 1995, and went on-line with an Internet web site in January 1996.
[Sharon goes on to expand on ISNA's activities, and to talk about the formation of the Ambiguous Genitalia Support Network (AGSN) in 1995, the Hermaphrodite Education and Listening Post (HELP) in 1996, the Intersex Support Group International (ISGI) in 1998 and others.]
Time magazine published an article on 1 Mar 2004 titled Between The Sexes - More babies than you might think are born neither boys nor girls. Sorting it out is a lifelong struggle by Christine Gorman and Wendy Cole (http://www.time.com/time/magazine/article/0,9171,1101040301-593551,00.html (or here). It relates the experience of the mother of an intersexed child and that of three adult intersexuals, and discusses the changing attitudes within the medical profession.
A UK group member wrote a chapter for a new gynaecology textbook which was published in mid-2004. She announced it to other group members as follows:
I've just received my complimentary contributor's copy of the newly published textbook: 'Paediatric and Adolescent Gynaecology - A Multidisciplinary Approach'. Editor in chief: Adam H. Balen. Co-editors: Sarah M. Creighton, Melanie C. Davies, Jane McDougall, Richard Stanhope. Cambridge University Press.
All these clinicians (and a number of other chapter authors) have attended our meetings as guest speakers. My chapter is titled 'Patients and Parents in Decision Making and Management'. I was assigned this long-winded title (in Feb 2001 - it's taken a while to publish): it wasn't my choice.
It's essentially an intersex textbook with a significant emphasis on psychological care (and on issues such as psychological support for pressure dilation in vaginal hypoplasia) with chapters by clinical psychologists like Lih-Mei Liao, Julie Alderson and Polly Carmichael. There is a chapter called 'The XY Female' by our old friend Cathy Minto and chapters by a number of internationally known experts such as Garry Warne in Australia and Ieuan Hughes in Cambridge.
It's amazing to see how incredibly different in emphasis this textbook is, compared with the ones that I and another group member surveyed for the article "Reading the Words" in ALIAS No. 9, Autumn 1997. A lot has happened in the last 5-10 years.
An article (http://www.haaretz.com/hasen/spages/534445.html) with the above title, by Vivian Abu Raad, appeared in an Israeli publication (February 01, 2005, Shvat 22, 5765). It tells the story of a young woman in Israel who contacted the UK support group in late 2002, became a UK group member and is now setting up a support group in Israel. She says: "I was interviewed by Vivian Abu Raad. She is my friend and writes in Haaretz. I thought this is kind of therapy for me and a push for the Israeli support group".
If you compare this account with the personal story (Angel) on our site, that she submitted when she first made contact with us, you can see how far she has come, both in gaining knowledge about her condition and in confidence in speaking out so as to help and educate others.
A book titled Intersex and Ethics was published in early 2006 by Springer. It is edited by Sharon Sytsma who teaches philosophy at Northern Illinois University in the US, covers a wide variety of disciplines in relation to intersex and has chapters by experts from various countries. See flyer for further information. See here for the book's contents list. Access (fee payable) via http://www.springerlink.com/content/q303r8/.
UK-based intersex researcher Iain Morland (www.iainmorland.net) works with Lih-Mei Liao (clinical psychologist at UCLH, London) to run periodic seminars on matters relating to intersex. Both he and Lih-Mei have written chapters for Sharon Sytsma's book (see above). Iain's PhD is available online at http://research.iainmorland.net.
A book called Intersex by Catherine Harper was published (August 2007) by Berg. The author is Head of the School of Architecture and Design at a UK university. The web site of her previous place of work (a UK art college) says:
Catherine Harper is a textiles practitioner and writer who has specialised in large-scale public art, speculative exhibition work, performance, and creative-critical text... ...She writes on craft, textiles, the body, gender and subjective narratives... ...She completed four years of a second PhD at Goldsmiths College, London - examining sex/gender, desire, and identity performativity - but chose to complete this research project in book form. That text - 'Intersex' - will be published by Berg, Oxford [in] 2007, while a second related book - 'Sextiles' - is currently in progress.
For details see http://www.bergpublishers.com/uk/book_page.asp?BKTitle=Intersex.
Nuria Gregori, Carmen Gallego and Silvia García-Dauder, from the Universities of Valencia and Complutense in Madrid, Spain, gave a feminist-viewpoint paper titled New Managements in Intersex Debates at a conference, Past, Present and Future: from Women's Studies to Post-Gender Research, 14-17 June 2007, UMEA University, Sweden. See http://www.umu.se/kvf/aktuellt/ppf/ppfconf.html for the conference details.
A book called Intersex: A Perilous Difference by Morgan Holmes was published in 2008 by Susquehanna University Press. The author (see earlier on this page) is an Assistant Professor at Wilfred Laurier University, Ontario, Canada.
A book called Fixing Sex: Intersex, Medical Authority, and Lived Experience by Katrina Karkazis was published in 2008 Duke University Press. The author is a Senior Research Scholar in the Center for Biomedical Ethics at Stanford University.
A book called Online Intersex Communities: Virtual Neighbourhoods of Support and Activism by Brian Still was published in 2008 by Cambria Press, Amherst, New York. The author is an Assistant Professor of English, specialising in technical communication and rhetoric, at Texas Tech Universiy. The book discusses the strategies of various intersex advocacy groups including AISSG. For details of the book see http://www.cambriapress.com/cambriapress.cfm?template=4&bid=287. The book appears to be a follow-on from the author's 2005 PhD thesis (University of South Dakota) titled The Virtual Activism of Intersex Persons: Countering Online the Norms of Medical and Gender Discourse. His thesis is available via http://www.proquest.com.
A book called Between XX and XY: Intersexuality and the myth of two sexes by Gerald N. Callahan was published in 2009 by Chicago Review Press. The author is an Associate Professor of Immunology and the Public Understanding of Science at Colorado State University. Review in UK's New Scientist magazine at http://www.newscientist.com/article/mg20327151.700-review-sex-in-shades-of-grey.html.
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 TV and radio coverage is mentioned on our Raising Awareness page. The newspaper and magazine articles are covered under AIS in Newspapers/Popular Magazines below.
Our media experience with regard to the Caster Semenya issue prompted us to prepare a Media Advisory which we displayed on the site.
Morgan Holmes is the editor of a collection of essays/articles titled Critical Intersex, published in 2009 by Ashgate Publishing. The author (see earlier on this page) is an Associate Professor at Wilfred Laurier University, Ontario, Canada. For details of the book see www.ashgate.com/default.aspx?page=637&calcTitle=1&title_id=8941&edition_id=11106.
In Dec 2009 we received an email from Chris Somers at the Combined Universities Centre for Rural Health (CUCRH) in Geraldton, Western Australia, alerting us to a 2008 report he’d co-authored called Intersex and Androgyny and the Implications for Primary Care Provision. You can read about him at http://www.cucrh.uwa.edu.au/fellowship/Chris_somers.html and you can download his report via the above web page or directly from http://www.cucrh.uwa.edu.au/fellowship/files/Intersex%20and%20Androgyny%20Report%20Somers.pdf.
In July 2010 the co-ordinators of AISSG UK and the Adrenal Hyperplasia Network (AHN) had a paper, Importance of Support Groups for Intersex (Disorders of Sex Development) Patients, Families and the Medical Professsion, published in the online issue of the journal Sexual Development.
In 2013 Dr. Lih-Mei Liao (Cons. Clin. Psychol., UCLH, London) and Margaret Simmonds of AISSG UK had a chapter, 'Counselling Clients Affected by Diverse Sex Development', published in a book titled Getting the Message Acrosss: Communication with Diverse Populations in Clinical Genetics. Jennifer Wiggins & Anna Middleton (Eds), Oxford Univ. Press. The front matter (final proof) is available here, and the chapter (final proof) is available here. The book can be purchased on Amazon.
Jeanne Nollman, who is a member of our US sister group, had a 2-part article An intersex story, from X to Y published in 429 Magazine on 22 Mar 2013.
In Sept 2013 Dr. Lih-Mei Liao (Cons. Clin. Psychol., UCLH, London) and Margaret Simmonds of AISSG UK had an article, 'A values-driven and evidence-based health care psychology for diverse sex development', published in a special issue, Intersex/DSD post-Chicago: New Developments and Challenges for Psychologists, of the journal Psychology and Sexuality.
Blurred Biology: How Many Sexes Are There? Article by C. Colson in Breakpoint Online 61016 (Oct 16, 1996).
The Gender Blur: Where does biology end and society take over? Article by Deborah Blum, UTNE Reader, No. 89, Sept/Oct 1998 (http://www.utne.com -- do a search on the author's name).
Sex Police. An article by Sally Lehrman (1999) about 'gender reinforcement' surgery, in Salon Magazine (http://www.salonmagazine.com/health/feature/1999/04/05/sex_police/).
The Sex that Dare not Speak its Name by Emily Nussbaum, in Lingua Franca (magazine for academic/university people), May/June 1999 (http://www.linguafranca.com/9905/intersexuals.html). Features Cheryl Chase of ISNA, Suzanne Kessler, Alice Dreger and Anne Fausto-Sterling.
A Question of Gender (http://www.aissg.org/pdfs/nussbaum-article.pdf). Another article by Emily Nussbaum (?date ?publication).
Boy? Girl? Article by Deborah Blum, Life magazine, June 1999 ? (http://www.lifemag.com).
Hermaphrodites Press Surgeons to Quit Gender Adjustment on Infants by Louise D. Palmer (http://www.aissg.org/pdfs/palmer-article.pdf). Article that appeared in 26 newspapers and via the UPS Wire Service (1999). A useful summary of how anti-surgery pressure built up during the early-late 1990s (mainly from ISNA in the USA), what the main arguments were ,and how doctors reacted. The time period, and the rising pressure on doctors, very closely mirrors that associated with AISSG in the UK (in a parallel and largely independent manner but with less emphasis on 'gender reinforcement' surgery and more on the anti-secrecy issue and on providing multi-disciplinary care with professional psychological support).
Intersexed Activism, Feminism and Psychology: Opening a Dialogue on Theory, Research and Clinical Practice. Cheryl Chase of ISNA interviewed by Peter Hegarty in the Feb 2000 issue of the journal Feminism and Psychology (http://www.sagepub.co.uk/journals/details/j0191.html - if in N. America, enter usdetails instead of details).
German article on intersex/AIS. Article in a German newspaper/magazine, Geo Wissen (2000) (http://www.zeit.de/2000/40/Wissen/200040_intersexneu.html).
Frau und Mann - Alte Mythen Nuen Rollen. An entire issue (No. 26, 15 Aug 2000) of Geo Wissen magazine devoted to the subject (http://www.geo.de/magazin/wissen/2000/02.html).
Making the Cut. Article by Martha Coventry in MS Magazine, October 2000 (http://www.msmagazine.com/oct00/makingthecut.html).
The Gender Police. One of several articles ('Beyond Two Sexes', 'Boy Meets Girl', 'Making Babies', 'The Gender Police' and 'Venus and Mars') in a special gender issue of New Scientist magazine (http://www.newscientist.com - do a search for the 12 May 2001 issue).
Ethics and Gender. Article by Lisa Melton in The Times (UK national newspaper) on 26 June 2001 about CAH and genital surgery in intersex conditions (http://www.thetimes.co.uk/article/0,,72-2001220067,00.html or here). Also available via the Adrenal Hyperplasia Network website (http://www.ahn.org.uk).
What The F___ is Ann Coulter?! An offensive and unbelievably stupid article by Ted Newsom on Larry Flynt web site, 27 Oct 2008 (http://larryflynt.com/?p=298).
Filmmaker Traces Evolution of ‘Intersex’ by Nadia L. Farjood, in The Harvard Crimson, March 28, 2011 (http://www.thecrimson.com/article/2011/3/28/intersex-conditions-people-honan/#:).
Note: There are other, more academic articles covering controversial areas (surgery, informed consent, truth disclosure etc.) listed at the bottom of our pages on Genital Plastic Surgery and Obtaining/Facing Diagnosis. See also ISNA's bibliography for a large selection of articles.
This novel by Batya Gur, first printed in 1994 (published by Keter), translates literally as I Didn`t Imagine It Would Be This Way (although the English translation of the title, given on the book itself, is After Birth). It's about the life of a gynaecologist in Jerusalem and the impact an AIS patient has on her personal life.
The website of The Institute for the Translation of Hebrew Literature says: Batya Gur (b. 1947, Tel Aviv, Israel) writes detective novels and is a literary critic for the Ha`aretz newspaper. She studied Hebrew Literature and History at the Hebrew University and completed her MA in Comparative Literature. She taught literature in high school before moving to the United States for many years. Her book, A Saturday Morning Murder, has been televised. It says Lo Kach Tearti Li is available in German (Berlin Verlag 1996, Goldman Munich 1998). The authors other detective novels have been published in English by Harper Collins, but not this novel (as of 2003), it appears.
In April 2000, we were approached by Alvin H. Felman MD, a retired pediatrician and pediatric radiologist who said, "For the past several years I have been writing novels. This most recent one, in which the main character has AIS, is written but being edited". He provided a synopsis. Please contact the UK group for more details.
Die Luftgängerin (The Air-Walker) by Robert Schneider. BT BEI Goldman (pub). A German novel with an AIS heroine who is likened to an angel. Obtainable from http://www.bol.de. A UK group member in Greece said:
Some days ago I finished reading the book The Airwalker [Die Luftgängerin]... It is written by an Austrian or Swiss author in German (I ordered it from Germany!) and it is a very good one! ...This book gives a very sensitive approach of the condition. B______ told me that she phoned the author and left a message but he did not reply (strange, an AIS girlfriend perhaps?).
...It is very well written and I found it really interesting that there is also a policeman in the novel who learns about the condition of Maudi (the name of the AIS girl) and he begins to understand that... also his elder sister who died many years ago must have had AIS! The girl is presented as an angel and a very good and emotional description is given of her psychological instability. This author must have a really good idea about AIS and its psychological impact. In Greece he became very famous with his last novel, The Son of Sleep. I really hope that it is going to be translated in English so that all orchids could read it.
You know, it gives you a strange sense about how 'normal the condition can seem when you see a person with AIS being the main person in a novel of 400 pages!! I would love it if it had alredy been translated, I would give it to friends (who do not know) and after that I could ask them what do they think of it.
Middlesex, published in Oct 2002, is a novel (pub. Farrar, Straus and Giroux in the USA and Bloomsbury in the UK) by Jeffrey Eugenides (http://www.jeffreyeugenides.com) featuring someone with 5-alpha reductase deficiency. Reviewed on various sites such as http://www.salon.com.
A UK AISSG member attended an interview between the author and Mariella Frostrup in London on 9th Oct, broadcast live on BBC Radio 4's Front Row programme (see http://www.bbc.co.uk/radio4/frontrow - search on 'Eugenides'). The author explained that hitherto this type of condition had only been described in fictional works in mythological terms and that he wanted to write from the viewpoint of a real person. He mentioned AISSG during the interview. The group member had sent him the group's factsheet, c/o the interview venue, asking him to publicise the group.
Apart from some small inaccuracies and a few bizarre moments in the book, the author seems to have done his homework, and it presents a good account of what it's like to grow up with a strange inexplicable condition, and of the attitudes of doctors and parents. It should help educate the general public about such conditions. The main problem is his use of the term 'hermaphrodite' to describe his character up-front in the book. All the book's reviewers picked this up and propagated it. Buried deep within the text the more accurate (but equally horrible and out-dated) medical term for such conditions ('male pseudo-hermaphrodite') is mentioned. Having said he wanted to get away from mythological concepts it's a pity he had to use these terms at all.
Eugenides published a short story, The Oracular Vulva, in the New Yorker magazine (21 and 28 June 1999) and which he seems to have used as the basis for one of the chapters in the book.
Morgan Holmes (see earlier on this page) published an article Cal/liope in Love: The 'Prescientific Desires' of an Apolitical 'Hermaphrodite' in the Journal of Lesbian Studies, Volume: 11 Issue: 3/4, 16 Aug 2007. Available via http://www.haworthpress.com/store/ArticleAbstract.asp?ID=69292 where it says: "This article provides a critical reading of heterosexist determinism and the erasure of lesbian desire, activity and subjectivity in Jeffrey Eugenides' novel, Middlesex".
Ilario: The Lion's Eye, published in Nov 2006, is a novel by Mary Gentle (pub. Gollanz), a follow-up to her Ash: A Secret History. A review in the Sunday Times (03 Dec 2006) said:
The year is AD 1428.... The narrator, Ilario, is a true hermaphrodite, a man-woman, never entirely comfortable in either role. Forced to flee by murderous parents, he/she goes from Spain to Carthage in search of an artistic mentor. All that he/she wants to do is to paint: not in the symbols required by the church, but views of places and people as they truly appear.
The first chapter features a graphically explicit sexual encounter, which flags up the fact that this is most definitely an adult fantasy.... Ilario is more about gender than sexuality, and overwhelmingly concerned with the meaning of true love. Love is the key theme -- not erotic or romantic, but the unselfish self-sacrificing love we expect from parents.
Annabel By Kathleen Winter. Text below from review by Candace Fertile in the Vancouver Sun, 28 Aug 2010. The book was shortlisted for the 2011 Orange Fiction Prize.
While the subject matter of her first book -- hermaphroditism -- is remarkably unusual, Kathleen Winter uses it to develop a compelling novel about love and loss and how human beings react to difference. The Montreal writer (formerly of St. John's, N.L.) sets Annabel in a small community in Labrador, and the author's description of the landscape is as arresting as the characters who inhabit it. The novel opens with death. Graham Montague, a blind man who nevertheless manages to be a superb hunter, takes his young daughter, Annabel, canoeing. When she sees a beautiful white caribou, she excitedly stands up, and the canoe capsizes. Both drown.
Graham's widow, Thomasina, forges on with her life and is present to help with the birth of Jacinta and Treadway Blake's baby. It's this child who has both male and female genitalia, and in 1968 the sex of such a baby was determined by measuring its penis, as medical opinion seemed to be that the child needed to be assigned a sex. The margin of error is huge, and the novel raises the question of why the child couldn't just grow up naturally, with all parts intact. Treadway makes his living as a hunter and trapper, as do many of the men in the novel. His wish is for a son. Jacinta is not so sure. She loves her baby, and says she would if the baby had two heads; the baby is itself. But she lets the doctors and her husband decide, and their baby is named Wayne. (The only other person in the village of Croyden Harbour who knows about Wayne is Thomasina, and she calls him Annabel in secret.) Treadway is fearful that his son will exhibit female traits. Jacinta mourns the loss of a daughter while loving and trying to protect Wayne.
A problem facing Wayne's parents is what to tell him. Naturally, Thomasina believes in the truth; however, she recognizes that it's not her right to tell him. The third-person narrator allows readers to see into the major characters' minds, and Winter's sympathy for the situation is palpable. Wayne is a lovely child, and his best friend, Wally (named for Wallis Simpson), is equally engaging. Treadway has problems with his son's choice of a girl for a best friend, but it's clear that at least for a part of their childhood, Wally and Wayne are huge supports for each other. When Wayne decides to build a fort over a stream for himself and Wally, Treadway takes over. He simply doesn't understand the children's desire for a place to play and talk.
Wayne's parents don't agree on how to treat him: Treadway held a judgement in his body. He moved his body with unnecessary precision, his face rigid with purpose. He became unreachable but his body spoke, and Jacinta hated this. She wanted words to come out of his mouth but they came out of his bones. His bones said, You may be lenient or blind, but I am neither. Of course, Treadway is blind to Wayne's fundamental being and, with a lovely use of humour, Winter shows his discomfort at Wayne's obsession with synchronized swimming, a female sport. However, as baffled as Treadway is by Wayne, he loves his child in his own way. But competing for his attention is the land, and Treadway prefers the months when he's out on his trap-lines, living off the land in solitary peace. He reads voraciously and knows his part of Labrador with abiding love. Life is harsh in the vast landscape, but it offers Treadway a sense of belonging. As the narrator says, "Some know, from birth, that their homeland has a respiratory system, that it pulls energy from rock and mountain and water and gravitational activity beyond earth, and that it breathes energy in return. And others don't know it." Treadway does, but Jacinta, who is from St. John's, does not, and the couple's problems develop from their differing attitudes to their child and their home.
A new biography titled That Woman - The Life of Wallis Simpson, Duchess of Windsor by Anne Sebba was published in August 2011.
In advance of the book's publication the Daily Mail published an article (06 Aug 2011) by the biographer that was described as an extract from the book and titled Was Wallis Simpson all woman? It resurrected the old rumours about Mrs Simpson's sexual make-up (discussed also in a 1996 book by Michael Bloch and accompanied at that time by loads of sensationalist rubbish in various newspapers). The Daily Mail article likewise contains various inaccuaracies and misleading statements with regard to AIS and intersex in general. For example, having speculated that Wallis possibly had AIS (but hopelessly mixing up the features of CAIS and PAIS) Sebba postulates that "Another possibility is that she was born a pseudo-hermaphrodite, with the internal reproductive organs of one sex and the external organs of another." This is an umbrella term for AIS and a number of similar conditions, so it's akin to her saying "It may be an apple, but another possibility is that it could be a fruit". And why dredge up an archaic and stigmatising term that is no longer used, even in the medical literature, anyway.
It seems that instead of consulting specialist intersex clinicians, Ms Sebba chose to depend on the words of a cosmetic surgeon who remodels noses and breasts (and whose misguided comments were also taken up by the media in 2009 in relation to Caster Semenya) and a specialist in gender dysphoria in children. As a review of the book in The Times (28 Aug) put it: "Sebba fleshes out these hoary titbits with dubious insights from doctors and psychiatrists about the possibility that the duchess was a hermaphrodite: a speculation more amusing than convincing.".
An associate of the UK support group has published a novel in which the main character is a woman with CAIS. It's essentially a story about relationships of various forms and is constructed around the character's life events from childhood to age 30, in the course of this touching on many of the issues, both medical and social, that arise for her (and her parents). This is how the author describes the book:
What is it that defines a person? Their looks? How they behave? Maybe their likes and dislikes? Or does it go deeper than that? Is it their genetic makeup perhaps? Rachel is a tall, good looking, intelligent and above all a very sensible young lady. Returning from school one day, she overhears her parents having a furious argument; something about ‘life threatening’ and ‘needing an operation’, oh and there’s a grave risk involved. Then to her horror she realises that they are talking about her! That day she discovers a secret; something that has been kept from her for a very long time which will change her life forever. Last Weekend follows Rachel as she comes to terms with her new life and makes plans for a very different future. She needs to answer one of the most fundamental questions anyone can ask of themselves: how far will you go to find happiness and can you live with the consequences? Last Weekend. A love story.
Ian Richardson, the author of this book, says (March 2012):
It was back in June 2007 that I was kindly invited to the AISSG meeting in London to talk about my film and book project, God’s Triangle, the tragic story of what happened to my CAIS aunt, Florrie Cox. a misssionary in India. The film is still in what is known in the movie business as “development hell” as the producer attempts to find the right director and cast and the millions of dollars needed to get the project to the silver screen. However, I have completed the book about my search for the truth about my aunt, and why the Baptist church, the press, the judiciary and the Freemasons colluded in covering up her divorce.
The book is now available through online outlets. The cheapest and fastest of these is the official website http://www.godstriangle.com/ which contains extracts from the book and the comments that have so far come in from the test launch in Australia and the UK earlier this year. I think you will find God’s Triangle a gripping story that will touch you all. Finally, I want to thank all the AISSG members who contacted me with their stories and helped me set the right tone for the book and the film script.
AIS, and in some cases the UK support group, had some early exposure in the national newspapers/popular magazines. Most of the newspaper articles are not worth reading. The magazine articles tend, on the whole, to present a more accurate and sympathetic picture. Those marked with asterisks (**) relate specifically, or mostly to AIS. Note that the contact details given for the UK group in some of the earlier articles are now out of date.
In chronological order:
The following articles were in N. American newspapers/magazines. Those marked with asterisks (**) relate specifically, or mostly to AIS.
In chronological order:
This list of N. American publications is not necessarily up to date. We often don't hear about such articles unless members of the N. American AISSGs alert us to them.
See also Raising Awareness.