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This page provides access to transcripts of debates, often between XY women, on controversial aspects of AIS and related conditions.
But first... while not specifically about AIS... we had to include this little gem, rushed to us by a group member:
I was watching Star Trek Voyager last night (yup, I'm a Trekkie) and there was a line that I just had to share. Some of you may not know the characters, but the scene was Captain Janeway talking to Seven of Nine about Janeway's ancestor having a lot of influence on her life. Seven points out that the ancestor is so far removed in the past that Janeway's genetic code consists of only 1/16 of the ancestor. Janeway then said:
"It's not about chromosomes, Seven, it's about character."
Loved it. I thought it was a nice and succinct way of saying what many of us have been talking about in light of Greer [see lower down on this page] and everything else. See... if Greer... if everyone... only watched Star Trek, the world would be a better place! :)
The text of an article by Morgan Holmes that deals with feminist issues in patriarchal medicine and its relation(s) to intersexuality), followed by a discussion between the author Morgan Holmes, an AISSG member and Cheryl Chase of the Intersex Society of North America (ISNA), in around 1995.
A few years after the support group became formalised, an article titled 'Medical Ethics and Truth Telling in the Case of Androgen Insensitivity Syndrome' by Anita Natarajan appeared in Canadian Medical Association Journal, 154 (4) 15 Feb 1996 and the caused a lot of negative reaction within the group.
The article is at http://www.cma.ca/cmaj/vol-154/0568e.htm. The group member who supplied the web address for the journal article said "I was pretty upset after viewing this piece of garbage". Comments on the article appeared in "Truth-Telling Debate" in issue No. 5 of the support group's newsletter, ALIAS.
The medical journal published some responses, from support group members and others, in their 154 (12) 15 June 1996 issue (reproduced in "Sex, Lies and Ideology" in ALIAS No. 6, which is available as a free sample download from our Literature page, or go to http://www.cma.ca/cmaj/vol-154/1829e.htm for the original journal version).
A letter from a doctor who, as a result of reading the exchanges, had come round to the notion of truthful disclosure, appeared in the 155 (6) 15 Sept 1996 issue of the journal (reproduced in "A Learning Experience" in ALIAS No.11, Spring 1998, or go to http://www.cma.ca/cmaj/vol-155/0632e.htm for the original journal version).
It seems that Natarajan subsequently took back some of her views in an online follow-up statement, available (together with the text of her original article) at http://www.happinessonline.org/CommonSenseMoralCode/p3.htm.
An email discussion in late 1997 in which several adults with AIS and related conditions look back at how they felt on the threshold of adolescence.
An email discussion in approx 1997/8 amongst a group of adults on the pros and cons of truth disclosure and the effects of finding out about one's condition at various times of life.
An email discussion in 1997 between three women concerning the role of the hormone, Mullerian Inhibitory Factor (MIF), that prevents the uterus and upper vagina from developing in AIS and including speculations about whether it might be possible in the future to stop this hormone from acting in a foetus known to have AIS.
Three AIS women had an email discussion in 1997 about the coverage of AIS in gynaecology and endocrinology textbooks, about the naming conventions and language used, and about outdated and paternalistic attitudes in relation to truth disclosure, provision of psychological counselling etc.
By late 1999 women with AIS or closely related conditions were starting to discuss and take ownership of the terminology that has been used to describe them in medical texts. Click here to read a debate on this amongst a group of women.
"Learning by the Book" in ALIAS No. 9
"Reading the Words" etc. in ALIAS No. 9
"The Power of Language/Culture" in ALIAS No. 9
Sometimes we are presented with a depiction of AIS in the media - usually in a completely inept, insensitive and hurtful fashion, building on a supposition that AIS characterises freaks rather than normal, sensible people. Below we offer links to some discussions amongst people affected by AIS about some coverage of their condition in the media.
In October 1998, one of our members emailed ...
Earlier this evening, ______ [my neice] called me and said, "Quick, turn on 'ER' on NBC, they're doing a thing on a little girl who has AIS!" So, I dropped everything, ran and turned on the TV and sat there wired.....
So began our exposure to a coverage of AIS on a popular television show. We present here a synopsis of the relevant parts of the show, some letters sent to the producers (none of which produced any apparent results) and some of our discussions.
See also our Raising Awareness page for details of a really awful episode of the US 'House' medical drama series that featured AIS. Intersex, or AIS specifically, has also featured in the BBC's 'Casualty' series and in 'Grey's Anatomy' (also covered on our Raising Awareness page).
Feminist author Germaine Greer had quite a lot to say about AIS in her book The Whole Woman (published in hardback by Doubleday in the UK in early 1999). We here provide the relevant excerpt, and communications that took place in Spring/early Summer 1999 between people knowledgeable about AIS and Prof. Greer.
She later had a bit of a gripe in her regular 'Country Notebook' column in the weekend section of Daily Telegraph UK newspaper (Saturday June 5, 1999) at the fact that we'd given her such a hard time!
On March 7, 2000, Greer gave a talk in London linked to the publication of the paperback edition of the book. Dr. Cathy Minto (Gynaecology Research Fellow, UCL/Middlesex Hospitals, London), with whom we are collaborating in a research study (see Research Studies) attended the talk. She told us afterwards:
...I am still grinning ear to ear after managing to get the microphone and ask Greer a thing or two last night. She admits that she was wrong about AIS, and I have challenged her to retract and apologise. I'm sure she won't but it was worth a try. The nicest thing was that people came up afterwards asking what AIS was and where they could get more information, so I gave out the [support group] web address....
It seems that Greer actually made a few factual alterations in the paperback edition, e.g. she acknowledged the two forms of AIS (CAIS and PAIS) a distinction she failed to make in the hardback edition, although her negative 'take-home message' unfortunately remained the same. It is apparently quite rare for alterations to be made in this way and, one assumes, can only be a result of the criticisms she received from members of our group and others.
The whole Greer saga, with commentaries from group members/contacts, is set out in "Oh Dear, Ms Greer" (ALIAS No. 14), "Greer and Angier Books" (ALIAS No. 15), and "Greer Update" (ALIAS No. 17). See our Literature page.
See also AIS in Articles/Books for some of the other coverage of AIS/intersex in newspapers/magazines.
The American popular science magazine, Discover, published an account ('The Curse of the Garcias', in the series 'Vital Signs', in the Dec 2000 edition) by Robert Marion, a professor of genetics at Albert Einstein College of Medicine and director of genetics at Montefiore Medical Center in New York City. In it, he describes how the case of a Mexican woman with CAIS was handled at his center.... by, in effect, fobbing her off with half-truths. Some AIS Support Group members/sympathisers wrote to the author and/or the magazine editor to complain. You can read their letters here.
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/.
A new naming convention, based on the term Disorders of Sex Development (DSD), was introduced at a so-called 'intersex consensus' conference in Chicago in 2005, jointly organised by the US-based Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology. The new terminology is gaining ground in the medical literature (2011) but continues to be controversial amongst many patients, some groups that represent them, and some medical professionals. See here for coverage of this topic.