The Curse of the Garcias

The founder of the US branch of the AIS Support Group wrote to Robert Marion, the author of the article in Discover magazine (http://www.discover.com/issues/dec-00/departments/featvital/) as follows:

Dear Dr. Marion:

It was with keen interest that I read the article '"The Curse of the Garcias" in the December issue of Discover magazine. My attention was particularly drawn to your statement that you did not disclose the truth about your teenage patient's diagnosis of AIS.

Because I am an attorney it is tempting to address the legal implications of your decision. In support I would be inclined to explain why it is legally treacherous for physicians to rely on therapeutic privilege, pointing to a spate of recent law review articles which conclude that a physician who fails to disclose the true diagnosis to his intersex patient is likely to find himself on the losing end of a complaint alleging that he failed to obtain the necessary informed consent for treatment. (Fn- will cite to the Diamond and Beh article) But such discussion of legalities would merely abstract a truth I know tangibly-- a truth borne of my personal experience as a woman with AIS who was told lies about her condition by her physician.

In early adolescence I had been told the standard lie that I had "twisted ovaries" which were removed to prevent them from becoming cancerous. It immediately bred a horrible fear that I was dying of cancer. My parents and doctors, fully believing that I accepted this lie and was faring beautifully in school and personal relationships, thought there was no need to "upset" me by disclosing the true nature of my chromosomes and gonads. They couldn't have been more wrong. Every instinct told me there was more to the story.

Given this natural curiosity I had only to spend two hours in a medical school library to make the correct diagnosis. There I stood, without any support whatever, learning the truth about my life and the lies I had been told.

I know my doctors and parents meant well but they failed to realize that there was an extraordinary probability that someday I would discover the truth. I have met more than 100 other women with AIS who were told lies and later discovered the truth in similar ways. In an age when the media and the internet allow any teenager with even a shred of curiosity to self-diagnose (Footnote: cite to AISSG and ISNA web-sites; and article "Was I Meant to be a Man?" by Ruth G. Davis in Cosmopolitan, April 2000), it is particularly naive to assume that the patient will be shielded from her diagnosis. The shame that is precipitated by discovering that there was something so horrible about yourself that your doctors and parents lied is difficult to quell. The concomitant sense that you cannot trust your family or physician to tell you the truth is even more enduring.

Years before I ever learned the truth about AIS I would walk down the street peering into the eyes of other women, desperate to find someone else who knew what is was like to confront the challenge of not having pubic hair, not crossing the threshold to womanhood by having a period, being infertile, and having "twisted ovaries." While I share the same essential DNA as my family, none of them has AIS and therefore none of them, despite good intentions, could understand what it was really like to be me. I am blessed to have achieved many accomplishments, but would gladly have relinquished every hard-earned degree and possession for a single moment of being able to look into the eyes of another woman who knew and understood. This is, I believe, no different than the need of an adopted child who, albeit raised in a loving family, is compelled to find her biological mother. It might be argued that an adopted child who has two loving parents should never be told that she is not their biological issue- and yet studies show unequivocally that despite how unsettling the news of their adoption is, children MUST be told the truth because if they discover that their parents have lied it will jeopardize their ability form intimate pairbonds in later life.

There is a need in every human being to know his or her history, no matter how difficult. There is an equal need to form connections with others who are like yourself. Lying to a patient about her having AIS results in denying her both such primordial needs.

When I was finally able to meet another woman with AIS I at long last felt connected to the world and other people. It began a process of healing which has allowed me to integrate AIS into my life and to develop intimate relationships with friends and lovers in which there is true love and acceptance. All of this would have been denied me if I had not learned the truth about the name of my medical condition and found the support of others.

Having gone on to establish the US branch of the Androgen Insensitivity Syndrome Support Group, I am now privileged to know more than 300 women with AIS, all of whom have come to find out the truth about their chromosomes and gonads in a variety of ways, not always pleasant. What is remarkable is that these women from all walks of life, education levels, and cultural backgrounds consistently report that they were unable to achieve any sustainable happiness until two pressing psychological needs were satisfied: 1) the need to have a specific name assigned to their medical condition, thereby confirming that it was a "known quantity," in conjunction with the complete explanation of what AIS is and how it occurs; and 2) the need to meet others who also have AIS and can therefore understand and relate to their experiences.

Time and again I have witnessed a radical transformation in self-image which occurs when a teenager (the AIS Support Group includes more than two dozen teenagers who know the truth), young adult, or even older woman with AIS is able to attend one of our annual meetings and meet other women who are like herself. For young women especially I think it is essential that they meet role models who have developed healthy intimate relationships with partners who know the truth and support them, including women who have adopted children, as well as others who have built a wonderful quality of life in which AIS remains a private, but no longer secret, matter. I want so much for your young patient to benefit from such experience; I know, however, that this is only possible if she is told the truth about having AIS.

Articles which have suggested that it is appropriate to lie to AIS patients about their condition have been met with an outpouring of objection from AIS women whose lives have been damaged by such practice. (cite Natarajan article and responses [see AIS in Articles/Books]). Many physicians have been alerted to the evidence presented by these patients. Accordingly, several leading medical texts which previously advocated in favor of dissimulation have been revised to now recommend truthful disclosure together with appropriate referrals to a patient support group (cite medical texts). Whereas it once was conventional medical practice to withhold the truth, the paradigm of treatment has evolved to the point where truthful disclosure is now the accepted standard of care. I am keenly aware that such disclosure will present challenges for the patient, but I also know that in the long run such disclosure will enhance, rather than compromise, the quality of the patient's life and intimate relationships.

It is interesting that the Discover article is entitled "The Curse of the Garcias." While I realize it may be difficult for you to understand, contrary to being a curse AIS has brought many blessings into my life. These blessings only became possible when I learned the truth and found support. I wish the same blessings for your patient!

Very truly yours,
Sherri A. Groveman

Sherri emailed us (23 Dec 2000) saying:

In addition to sending my letter to Marion directly, I also sent a letter to the editor similar in spirit to Mickey [Diamond]'s. The text follows:

To the Editor:

Robert Marion's article, "The Curse of the Garcias" [December] educates readers about the rare medical condition, Androgen Insensitivity Syndrome (AIS). Unfortunately, the article reveals that the one person Dr. Marion chose not to so educate was the very patient he describes; Dr. Marion admits that he failed to disclose the diagnosis to her. While Dr. Marion may think that he is "protecting" this patient by withholding information, instead he is placing her at risk of discovering it on her own (in sources such as your magazine or on the internet), without any appropriate support or counseling.

I know firsthand how devastating such self-discovery can be - I too have AIS, was lied to by my physician about the diagnosis, and uncovered the truth in a book found in a public medical library. Dr. Marion's approach doesn't ensure that his patient won't make a similar discovery. In all events it denies her the right to make informed choices about her medical care. Had Dr. Marion instead educated the patient about AIS not only would she have become a knowledgeable participant in her care, but she would also have been able to access the information and support offered by the Androgen Insensitivity Syndrome Support Group, whose membership includes hundreds of other young women with AIS.

Sherri A. Groveman

Founder, Androgen Insensitivity Syndrome Support Group USA
www.aissg.org

Sherri emailed us again (17 Jan 2000):

About a week ago I received a phone call from a fact checker for Discover indicating that they were planning to publish my letter (though no guarantee) and were considering asking Marion to respond. They said if it was published it would appear in the March [2001] issue.

It was published (see http://www.discover.com/mar_01/letters.html).

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The Publications Editor of AISSG (UK) wrote (20 Dec 2000) to the author of the article as follows:

The AIS Support Group (AISSG) UK
[Postal address]

http://www.aissg.org

20 Dec 2000

Robert Marion MD
Director of Genetics
Montefiore Medical Centre/Pediatrics
111E 210th Street, Bronx
NY 10467, USA

Dear Dr. Marion,

Your article “The Curse of the Garcias” in Discover magazine (Dec 2000) has come to my attention. The contents page of magazine summarises your article as “A young woman learns why her family history will keep her from bearing children”. I don’t think this is true. The article describes how a young woman is fobbed off with some half-truths (involving terms like “gonads” used in an evasive way) and in a manner that focuses solely on one single aspect of her condition.

Your article states that “Imelda’s exam showed that she was not normal in two ways. There was no axilliary or pubic hair, and her vagina was very short, ending in a blind pouch”. Why is it that, as far as one can tell from the article, neither of these things was discussed with the patient? Why do male clinicians only think of femaleness in terms of fertility and child-bearing? Imelda herself, let alone the reader, might have been interested to know how her vaginal hypoplasia would affect her ability to form a pairbond, which is arguably a much more fundamental human need than the bearing of children. Or did Imelda have to “accept the fact that nothing can be done to help me” on that score too?

You say that “telling a woman she has the chromosome complement of a man can have long-term and far-reaching psychological consequences”. Not nearly as long-term and far-reaching as the isolation and feelings of freakishness that result from not having been given the full medical name for one’s condition (how can you seek out others via a support group if you don’t know what your condition is called?). Most patients find out the truth for themselves at some point. Many read the words “XY chromosomes” or “male pseudohermaphrodite” upside  down in their medical notes and realise that the clinicians who are supposed to be caring for them haven’t even had the guts to give them the full story so they can put a label on their strange condition, can grieve properly, meet others, talk about it, and then move on.

AIS women who find our group, sometimes quite late in life, are euphoric at meeting others at long last, having believed for many years they were a one-off freak of nature; and the very interesting fact is that they do not really talk much at all about their XY chromosomes and testes, or about their infertility, but about their anger at the lies told to them by doctors and parents, lies that have prevented them from actually dealing with their situation emotionally.

They talk about having always suspected that something like this was at the root of their problems, about having set themselves apart from the rest of humanity and not having been able to form close relationships with anyone (because they’ve never had the chance to practise, with ‘safe’ people like psychological counsellors, the words they might use to explain their bodily differences, e.g. lack of pubic hair, to others).

They talk about their osteoporosis that resulted from, in some cases, not having had their HRT properly monitored and they talk about the anger of their XX female relatives at not having been told that they might be carriers of the altered gene.

All the AIS women known to me (several hundred) are of above average intelligence and many hold high-profile jobs as lawyers, researchers etc., so ‘hiding’ this sort of article in a scientific magazine is not going to keep it from their eyes. I correctly diagnosed myself as having AIS in my mid teens, using medical textbooks, several years before my doctors caught up with what was going on, but I was too traumatised to say anything because none of the adults in my life appeared to want to address the situation (and this suggested to me that my intersex condtion was not acceptable in their eyes).

“It’s possible we’ll find a condition we can’t fix” you told Imelda. Well, no one can fix the basic biology (yet) but the absolute best therapy is for a doctor to give an AIS patient the full facts and put her in touch with others affected. Your article is reminiscent of something from the 1960s. I think you’ ll find that things have moved on.

Can I suggest that you look at our web site, and in particular read the “Personal Stories” page. Might I also recommend that you read our newsletter (ALIAS) to appreciate the damage that secrecy and half-truths do, and the transformation that people experience when they meet others and realise that they have a known condition, that is documented, and that they are not, after all, so monstrous that their clinicians are happy to parade medical students past them and photograph them for papers/textbooks yet can’t bring themselves to tell them what is actually wrong with them. ALIAS No. 6 is available as a free sample download from our site.

Yours sincerely,
Margaret Simmonds

Pubs. Ed./UK Member Sec

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Prof. Milton Diamond emailed us (22 Dec 2000):

You might have seen the recent Discover magazine article about AIS. I thought it was terrible and wrote a letter to the editor (below). I don't know if it will be published but it should be, to try and remedy some of the bad of the original article:

Letter to Editor
Editor
DISCOVER
114 Fifth Avenue
New York, New York 10011- 5690

Dear-Editor,

As someone who has conducted extensive research with more than 50 persons with the Androgen Insensitivity Syndrome (AIS) I must comment on several aspects of the article recently published.

The first is the heading used. Certainly the AIS condition is not an advantage but neither is it a curse. Yes, there are cultures in which being unable to bear children is a disadvantage and stigmatized, but perpetuation of negative stereotypes does not better the situation. There are also cultures in which intersex conditions, of which AIS is one, are valued and where intersexed persons are treated with especial reverence. In such cultures it would be "The Blessing of the Garcias."

Other significant issues need address. These concern the management of the condition.

1. There is no way the mother, by observation, could suspect her child has the condition unless the condition is known within the family and the child's genitalia are ambiguously male or female. And there are those with Partial AIS who live as men and others who live as woman.

2. The patient came in asking for full information about her condition. The physician avoided this request. In my experience I have never had a response that the individual, regardless if living as a man or woman, did not want to know all the truth and feel more empowered by it.

3. Keeping the patient's condition secret prevents her from contributing to her own medical care in regard to osteoporosis, benefiting from genetic counseling and making other relevant medical and social decisions. It also hampers her from gaining help from an AIS support group.

4. Withholding truth, which will eventually come out, destroys the bond of trust which must exist between physician and patient for proper care and rapport. The secrecy also reaffirms in the patient's mind that the condition is indeed shameful and deserves being hidden. AIS is a common variant of development, not a freakish event.

5. Testosterone does not, as the article states, have anything to do with regression of the Müllerian ducts. That is due to MIS (Müllerian Inhibiting Substance) a separate testes hormone.

6. Removal of the patients gonads is unwarranted. The incidence of cancer in such testes is less than that for breast cancer, and few elect prophylactic breast removal. Watchful waiting is the preferred course.

I trust this letter will help those with their AIS condition and also those professionals and families that come into contact with them.

Sincerely,
Milton Diamond, Ph.D.

Professor Milton Diamond, Ph.D.
University of Hawaii
John A. Burns School of Medicine
Dept. of Anatomy and Reproductive Biology
Pacific Center for Sex and Society
1951 East-West Road
Honolulu, Hawai`i 96822
diamond@hawaii.edu

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Cheryl Chase, founder and director of the Intersex Society of N. America (ISNA) also wrote to the article's author as follows:

2 December 2000
Robert Marion MD
Director of Genetics
Montefiore Medical Center/Pediatrics
111 E 210th Street
Bronx NY 10467

Dear Dr. Marion,

Dr. Marion, I have taken the trouble to inquire about you with my contacts at Montefiore. People told me that you are remarkably humane, a strong patient advocate, and praised your book "Learning to Play God." I have chosen to write in the hope that I can convince you to change your mind about withholding important information from your patients with intersex conditions.

I write in reference to your article on AIS in the December issue of Discover Magazine. In that article, for the edification of the lay readership of Discover, you discuss AIS and a patient to whom you did not reveal her actual diagnosis of AIS.

This took me by surprise, because I have spoken, by invitation, on just this issue at Montefiore twice this year. My recommendation for full and honest disclosure met with widespread concurrence. Montefiore ethicist Jeffrey Blustein presented with me in January, and I delivered Grand Rounds to Pediatrics at the invitation of Dr. Paul Saenger in October.

Until a few years ago, such medical paternalism was standard practice. However, many patients who were dealt with in this way have now come forward to speak about the emotional pain caused in their lives by such medical deception. Your patient came to you with questions, and unless she is different from hundreds of other women with AIS, she went away with the uneasy feeling that there was something that you had not told her.

I realize that you withheld the diagnosis from Imelda Garcia in the belief that you were protecting her from learning something disturbing. But the chances are that she will eventually learn her diagnosis, and when she does, she will realize that you knew it and did not tell her. She will interpret that as an indication that her condition is shameful - so shameful that even her physician could not tell her about it.

How will Imelda learn her diagnosis? Like many other intersex people, she may visit the medical library and learn it all alone, confronted with freakish-looking photographs of women posed naked against charts with their eyes blacked out, and the ugly word "pseudo-hermaphrodite." Given the questions that she brought you from her biology class, this seems not unreasonable. That is how I learned my diagnosis, and I must tell you it was excruciatingly painful to learn that I had been lied to.

Or she may learn her diagnosis by reading the article in Discover Magazine, at the same time learning that millions of readers have learned about her life and her diagnosis, when her doctor chose not to share it with her.

Imelda may learn her diagnosis by searching the Internet. Or she may learn it by requesting her medical records. Or she may steal a glance at her medical records during a future visit to you, or some other physician. Or, at some future time when she is applying for medical insurance, her insurance company may ask her about her AIS. Or it may be revealed to her when she is rejected for military service by the results of her intake exam. (We know of people who have experienced all of these things.)

Or she may encounter media coverage of intersexuality. Patient advocate groups, including ISNA, are working overtime to get honest and accurate coverage of intersex people's lives, and images of intersex people who are not ashamed, into popular and professional media. She may learn of our work and her diagnosis (and that you withheld it) from popular magazines including Cosmopolitan, Glamour, and Newsweek, or from NPR, or a best-selling book like Natalie Angier's "Woman: An Intimate Geography." If she goes to college, she is even more likely to encounter the work of intersex patient-advocates. Our work is covered in many college texts on human sexuality, women's studies, and psychology, We have distributed hundreds of copies of our short videos "Hermaphrodites Speak!" and "Redefining Sex," and these are screened in college classes regularly.

Learning the name of her diagnosis will let Imelda find her way to peer support, which most intersex people find life-changing, and many find actually life-saving.

The tide of opinion with regard to truth-telling for intersex conditions has already shifted. I attach an extended discussion from the peds-endo Internet mailing list, in which clinicians discuss this shift. I also refer you to a special issue of the Journal of Clinical Ethics which has been re-issued in book form, "Intersex in the Age of Ethics" by ethicist Alice Dreger. (See enclosed review from NEJM.) You can order this book via ISNA's website, at http://www.isna.org/bibliographies/bookshelf.html. Another excellent resource for reading intersex people's narratives about the harm of medical deception is "Lessons from the Intersexed" by psychologist Suzanne Kessler, also available at our website. (See enclosed review by Brown University pediatric endocrinologist Philip Gruppuso.) Again, excerpts from these books are now widely used in college classes.

One thing that is clear from my presentations at medical schools including Montefiore, and from the discussion on the peds-endo is that pediatric endocrinologist and urologists have now recognized the value of truth-telling, but they want help with the actual jobs of disclosure and counseling. ISNA is working to address these needs. We have just engaged a social work intern who will be working under the supervision of an experienced sex therapist to draft guidelines for disclosure and counseling. And we are engaged in the production of a video tape for educating physicians, nurses, and mental health professionals about the new paradigm for care of intersex.

I would very much like to hear your response to what I have shared. ISNA works to improve the quality of life for intersex people, and many clinicians support our work. It takes courage to change medical practice. It is your reputation as a strong patient advocate that prompts me to write, in the hope that you will play an active role in this evolving paradigm shift.

I look forward to further discussion with you.

Yours Truly,

Cheryl Chase

Executive Director

ENC: Discussion of AIS and truth-telling from peds-endo email list
Book review of "Lessons from the Intersexed" by Phil Gruppuso MD
Book review of "Intersex in the Age of Ethics" from NEJM

Recent Coverage of Intersex in Media Addressed to Laypeople

Nussbaum, Emily. 2000. A question of gender. Discover, January, 92-99.

Davis, Ruth G. 2000. Was I Meant to Be a Man? Cosmopolitan, April, 200-203.

Ward, Phyllis. 2000. Is it a Boy or a Girl? Discovery Channel. Cable broadcast. Broadcast twice in 2000, with very high viewership.

Miller, Suzanne. 2000. When Sexual Development Goes Awry. The World & I, September, 148-155.

Kaufman, Jill. 2000. The Science and Culture of Gender (Lydon interviews Fausto-Sterling). Boston. Radio. Broadcast May 24.

Levay, Simon. 2000. Male, Female, Other. Nerve. Available from http://www.nerve.com/LeVay/intersex/intersex.html.

Fausto-Sterling, Anne. 2000. The Five Sexes, Revisited. The Sciences, July/August, 18-23.

Fausto-Sterling, Anne. 2000. Sexing the Body: Gender Politics and the Construction of Human Sexuality. New York: Basic Books.

Coventry, Martha. 2000. Making the Cut. Ms. Magazine, October/November, 52-60. Available from http://www.msmagazine.com/oct00/makingthecut.html.

Colapinto, John. 2000. As Nature Made Him : The Boy Who Was Raised As a Girl: Harper Collins. A best seller, promoted widely by author and subject appearances on tv and radio.

Bagemihl, Bruce. 2000. Left-handed Bears and Androgynous Cassowares. Whole Earth, Spring, 77-83. Available from http://www.wholeearthmag.com/ArticleBin/338.html. Letters (Intersex). 2000. Whole Earth, Fall, 100-101.

Allgeier, Elizabeth Rice, and Albert Richard Allgeier. 2000. Sexual Interactions. New York: Houghton Mifflin Company. This college textbook now presents images of intersex patient advocates, fully clothed, and contact information for ISNA.

Kalat, James W. 2001. Biological Psychology. Belmont, California: Wadsworth, A divsion of Thomson Learning. This college textbook now presents images of intersex patient advocates, fully clothed, and contact information for ISNA.

2000. BBC Outlook: Cheryl Chase and Philip Ransley on Intersex Management. London. Broadcast October 10 on many NPR stations.

Angier, Natalie. 1999. Woman: An Intimate Geography: Houghton-Mifflin Co. A New York Times bestseller.

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Dr. Cathy Minto emailed us (15 Jan 2001) as follows:

RE: The article 'Curse of the Garcias' by Robert Marion.

Disgraceful bit of writing. I hope he made the character up, otherwise apart from his negligent attitude towards disclosure, he has also given enough information to break confidentiality, as someone who knows Imelda could easily be able to recognise the her!

They should change the last bit of the article where they are telling her:

"This doesn't make you any less of a person.... you're young, you're smart, and you have your whole life ahead. You can be anything you want to be...."

[by adding the words:]

"..... except part of the AIS support group", Imelda added.

[The medics replied:]

"It is true, that because of our problem with disclosure you will never know the truth of your condition, meet others who can support you and work your way through to a time when you can begin to be happy with your body and the way that you are, etc. etc.....

What a load of rubbish!!

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