Blogs

Madison Woman Discusses Androgen Insensitivity Syndrome

Submitted by ISNA on Thu, 09/20/2007 - 21:05.

Classification: News | What We're Reading

On Friday, September 21, 2007, the Oprah Winfrey Show interviewed Katie, Lynnell, Hida, and Arlene about their experiences of growing up with intersex conditions. Marcia from Madison Wisconsin took advantage of the attention to the issue to tell her story to the Wisconsin State Journal.

Marcia says the Oprah show is an important milestone in talking about a condition that caused so much shame that her family and doctor hid the truth from her. She didn’t learn that she had XY chromosomes until she read her own medical records at age 35.

“I hope there will be other girls like me out there watching this and knowing they aren’t alone,” she said.

Read the rest of the story at Orchid ladies test gender perception.

Congratulations, Marcia!

Going beyond X and Y (Scientific American)

Submitted by ISNA on Thu, 09/20/2007 - 20:32.

Classification: News | What We're Reading

The June 2007 issue of Scientific American features a profile of Eric Vilain MD (a world renowned genetic researcher, pediatric endocrinologist, and member of ISNA’s Medical Advisory Board). The article, Going beyond X and Y, discusses the recent international medical consensus which agreed to drop the term “hermaphrodite” in favor of the more neutral “disorders of sex development” (DSD).

American College of Obstetricians and Gynecologists (ACOG) condemns vaginal surgery

Submitted by ISNA on Thu, 09/20/2007 - 20:26.

Classification: News | What We're Reading

The American College of Obstetricians and Gynecologists (ACOG) is the main professional association for the specialty of obststrics and gynecology. They recently published a paper in the journal Obstetrics and Gynecology condemning the practice of cosmetic gynecologic surgery. This article gives a
good discussion of ACOG’s opinion:

http://www.chicagotribune.com/news/local/chi-cosmetic_31aug31,0,7734462.story?coll=chi-unitednavover-misc

Welcome, Oprah Viewers!

Submitted by ISNA on Thu, 09/20/2007 - 19:55.

On Friday, September 21, Oprah discussed intersex (disorders of sex development) with Katie, Hida, Lynnell, and Arlene on The Oprah Show.

For more information regarding the issues raised this episode, please see DSD Guidelines for a free downloadable Handbook for Parents and Clinical Guidelines, a suggested reading list and links to diagnosis-specific support groups.

For more information and peer support regarding Androgen Insensitivity Syndrome and a wide variety of related conditions, including 5-Alpha Reductase Deficiency (the syndrome referred to in the book Middlesex), please visit the Androgen Insensitivity Syndrome Support Group in the U.S. or the British group’s more comprehensive website, www.aissg.org.

Here at Intersex Society of North America, we encourage you to visit our Frequently Asked Questions page. You can also order videos, or make a donation to support our work.

As of last year, there is a new international medical consensus that families and people affected by disorders of sex development should receive patient-centered care, as outlined in the DSD Guidelines. ISNA is working to make this kind of care a reality. If you would like to help us, please consider making a donation to support our work.

If you would like to discuss the show with other Oprah viewers, visit the Oprah Message Boards.

Want to see some photos of real people with Disorders of Sex Development who are not ashamed to talk about it? See photos at DSD Guidelines site and photos at Oprah’s website.

If you’ve looked over all these resources, and need to contact us, please enter your message or question at our helpdesk (you’ll need to create an account).

Advocates for Informed Choice

Submitted by ISNA on Wed, 12/13/2006 - 17:21.

Classification: Law

Founded in 2006 through an Equal Justice Works Fellowship, Advocates for Informed Choice is the first organization in the country to undertake a coordinated strategy of legal advocacy for the rights of children with intersex conditions.

DSD But Intersex Too: Shifting Paradigms Without Abandoning Roots

Submitted by ISNA on Wed, 05/24/2006 - 09:06.

by Sherri Groveman Morris, Esq.

The Intersex Society of North America (ISNA) and the Consortium on Disorders of Sex Development (“DSD Consortium”) have recommended that in venues where the medical care of infants is considered, the initialism “DSD” be used in favor of the term “intersex.” While both “DSD” and “intersex” are “umbrella” terms (meaning that they encompass people born with a variety of discrete conditions but having important features in common), the former has recently been adopted to aid in classifying conditions involving sex development. Prior to the adoption of “DSD” as the preferred term, there was apparently some confusion about whether certain medical conditions properly fell under the heading of “intersex.” ISNA’s avowed aim in preferring “DSD” is to support improved medical care for children born with such conditions. To that end members of ISNA have participated in the DSD Consortium, which has produced two publications entitled Clinical Guidelines For The Management of Disorders of Sex Development In Childhood and Handbook for Parents, both of which employ “DSD” nomenclature almost exclusively.

Why is ISNA using "DSD"?

Submitted by ISNA on Wed, 05/24/2006 - 09:02.

Founded in 1993, the Intersex Society of North America has always had reforming medical care for children with intersex conditions as one of its cherished goals. In our early years, ISNA also served as a support group for adults. When we incorporated, in 1999, we determined to focus our work primarily on medical reform. That means that much of our communication is created with parents and doctors in mind.

Over the past year, we have begun to use the term “disorders of sex development,” or DSD, in place of “intersex” in these contexts. It’s not our intention to make intersex an entirely medical issue. But we are addressing people working in a medical context. We have found that the word DSD is much less charged than “intersex,” and that it makes our message of patient-centered care much more accessible to parents and doctors. Our aim is to meet them where they are.

"Teaching Intersex Issues" Returns

Submitted by April Herndon on Fri, 05/12/2006 - 06:57.

After several years on hiatus, ISNA’s teaching kit is back! The newly revised Teaching Intersex Issues is now available.

The teaching kit is designed for undergraduate classes in fields such as Bioethics, Science and Technology Studies, Women’s Studies, and Cultural Studies and contains two weeks worth of lesson plans, including annotations of key readings and videos, discussion questions, and class activities. The kit also comes with a copy of ISNA’s Speakers’ Handbook, which contains valuable information about intersex conditions, “what if?” scenarios to help educators field difficult questions, and personal narratives from other educators and activists.

Womyn's Awareness Center Donates V-day Funds

Submitted by April Herndon on Fri, 04/14/2006 - 12:50.

ISNA would like to extend sincere thanks to the Womyn’s Awareness Center at Gustavus Adolphus College in St. Peter, MN for generously donating funds raised during their V-Day events on campus.

The WAC’s mission is to offer “a designated safe place for womyn and men interested in womyn’s issues to think, discuss, argue, laugh, and freely be themselves. It also serves as a resource center for feminist, reproductive rights, justice, queer, and various other issues.”

As a professor at Gustavus last year and as a research associate this year, I have seen the members of the WAC do very good (and hard!) work on campus to educate their peers and tackle the tough issues. This year alone, they’ve held several drives to collect cell phones for women, sponsored events to educate peers about sexual assault, organized programming to educate peers about feminism, and engaged their peers, faculty, staff, and administration in important conversations about diversity and campus climate.

ISNA Welcomes New Board Members

Submitted by April Herndon on Fri, 04/07/2006 - 09:20.

Classification: News

ISNA is pleased to announce that William Hanley, A.A., B.A. and Arlene Baratz, M.D have joined our Board of Directors.

Both Hanley and Baratz come to the board with a wealth of experience in the healthcare field where they have worked to understand and overcome healthcare disparities while working toward a patient-centered model of care. We’re proud to welcome these two new board members and look forward to working alongside them.

Click here to read more about “ISNA’s Board of Director

Adult Genital Surgeries for Intersex Present Problems

Submitted by April Herndon on Mon, 03/27/2006 - 09:06.

A recent article entitled “Adult Genital Surgery for Intersex: A Solution to What Problem?” by Mary E. Boyle, Susan Smith, and Lih-mei Liao suggests that genital surgeries among adult women with intersex conditions present dilemmas similar to those involved with infant surgeries.

After conducting interviews with six adult women who chose to undergo genital surgeries as adults, the authors concluded that the women in their study often experienced little or no dilemmas surrounding the choice to have surgery but that the women felt conflicted after surgery. Prior to surgery, the women in the study believed that having surgery would “confer normality” and help them feel they were entitled to intimate relationships. The interviews also revealed that the physicians caring for the women in the study often presented surgery as unproblematic course of action and that for some of the women challenging medical authority—even as adults—was very difficult.

Swedish researchers: Genitoplasty outcomes poor

Submitted by ISNA on Mon, 03/13/2006 - 11:21.

Classification: What We're Reading

Many U.S. physicians continue to dismiss the results from the London group of researchers, documenting poor outcomes from early genital surgery, as irrelevant. At a recent European Society for Pediatric Urology conference, a Swedish group reported similarly poor genitoplasty outcomes.

RESULTS:47 women had been operated, more than 50% had been operated at two or more occasions. 11 patients had only vaginoplasty done and in the remaining women it was combined with clitoroplasty. The cosmetic appearance as well as the function of clitoris and vagina are often not optimal. There is also a need from these patients to be able to discuss former surgery, especially since it was common in this group to state that the functional result has influenced their sexual life negatively.

UK Researchers: A knack for asking good questions

Submitted by ISNA on Mon, 03/13/2006 - 10:17.

Classification: What We're Reading

I’ve been updating my references database, and I continue to be impressed by the sophistication of the work coming from UK professionals on intersex issues. These articles are a great example.

  • Alderson, J, A Madill, and A Balen. 2004. Fear of devaluation: Understanding the experience of women with androgen insensitivity syndrome. BJ Health Psychol 9 (1):81-100.

  • Liao, Lih-Mei. 2003. Learning to assist women with atypical genitalia: journey through ignorance, taboo and dilemma. J Reprod Infant Psychol 21:229- 38.

  • Boyle, Mary E., Susan Smith, and Lih-Mei Liao. 2005. Adult Genital Surgery for Intersex: A Solution to What Problem? Journal of Health Psychology 10 (4):573-584.

Infant Vaginal Dilatations Continue

Submitted by Cheryl Chase on Wed, 03/08/2006 - 22:51.

Classification: News

Vaginal surgery generally requires a kind of post-operative care called “vaginal dilatation.” After surgery, the tissue tends to get smaller while healing. In order to keep the vaginal opening from closing up, the patient (or her mother or a doctor, in the case of an infant or child) is instructed to insert an object into the vagina, pressing against the scar tissue, on a regular basis.

When performed on a child, vaginal dilitation can be emotionally scarring for both child and parent. This is one reason why many experts recommend that vaginal surgery not be performed on children with DSDs (Disorders of Sex Development) — rather, it should be made available to patients who are at least adolescent, who can understand the reasons for the procedure, and who can do the necessary vaginal dilitations themselves (if the patient is not motivated to do this, then the surgery should obviously not be performed). The surgeon’s argument that vaginoplasty can be completed with a one-stage procedure on an infant has been roundly refuted — follow up surgery will almost always be required as the patient enters adolescence. Avoiding vaginal surgery on infants and children also allows for the patient (as an adolescent or adult) to try manual pressure dilation, which has been quite successful for many women who escaped vaginoplasty.

"House" Gets It Wrong

Submitted by April Herndon on Tue, 02/21/2006 - 14:23.

Classification: News

Last night I was shocked and horrified as I watched the plot of Fox’s popular medical drama, “House,” unfold. Fans of the show stay tuned each week to see Dr. Gregory House take on medical mysteries with a sarcastic wit and his own special personality. Last night’s episode, entitled “Skin Deep,” proved that much more is flawed about this show than the protagonist. It was, without a doubt, one of the most offensive and hurtful portrayals of people with intersex conditions that I’ve ever seen.

For those who didn’t see the show, allow me to summarize the painful episode. A 15 year old supermodel presents with mysterious symptoms, such as erratic behavior and uncontrollable twitching. Throughout the show, much is made of her feminine physique, with comments about her beautiful breasts and buttocks playing a lead role in the dialogue—even among the doctors. In the course of searching for a diagnosis, the medical team discovers that the young woman has been using heroin and that her father sexually abused her once while he was intoxicated. After ruling out effects from the heroin and possible post traumatic stress disorder resulting from the sexual abuse, House finally reaches the conclusion that the young supermodel must have cancer and a series of scans reveal internal testes that are malignant.

Arcus Foundation Awards ISNA $150,000

Submitted by April Herndon on Tue, 02/21/2006 - 12:24.

Classification: Funders

We are thrilled to announce that the Arcus Foundation has renewed funding for ISNA with $50,000 per year to help cover our 2006-2008 operating expenses! Arcus Foundation has been a key supporter of ISNA’s work since 2001, but this is the first time ISNA has secured ongoing funding from the Arcus Foundation.

Created in 2000 as a family foundation, the Arcus Foundation seeks to contribute to a pluralistic society that celebrates diversity and dignity, invests in youth and justice, and promotes tolerance and compassion. Initiated by Jon L. Stryker and Robert E. Schram, the foundation was formed in the belief that all individuals have a right and responsibility to full participation in our society and with the conviction that education and knowledge can be an antidote to intolerance and bigotry. Arcus has been ISNA’s strongest foundation sponsor since 2000.

Why Doesn't ISNA Want to Eradicate Gender?

Submitted by April Herndon on Fri, 02/17/2006 - 13:28.

We’re often asked why ISNA doesn’t forcefully advocate for a genderless society. Many times, these questions come from people with a genuine interest in gender studies and educating people about intersex. The truth is that we share lots of common ground with people in the humanities and/or activist communities who have fought long and hard to insure that the voices of marginalized people are heard.

When women of color told feminists that their lives weren’t reflected in theories that assumed white experience to be universal, scholars listened. When queer people came forward to say that theories of gender that neglected sexuality often fell short of capturing the realities of their lives, scholars listened. Without a doubt, scholars have a rich history of taking the voices of marginalized people seriously and changing their theories and practices accordingly, and now ISNA asks that scholars listen to what people with intersex conditions have to say—even if it might not be what they’d like to hear.

Intersex and Female Genital Cutting

Submitted by April Herndon on Tue, 12/20/2005 - 09:37.

Classification: Recent Publications

The Winter 2005 issue of the Harvard Civil Rights-Civil Liberties Law Review features an article about intersex. The article, entitled Intersex Surgery, Female Genital Cutting, and the Selective Condemnation of ‘Cultural Practices’, discusses the similarities between female genital cutting (FGC) in African and Asian countries and the cosmetic genital surgeries performed on intersex infants in the West. Written by Nancy Ehrenreich with Mark Barr, the article suggests that although people in the West often medicalize the cosmetic genital surgeries currently performed that these procedures, much like FGC, have cultural roots.

Getting Rid of "Hermaphroditism" Once and For All

Submitted by April Herndon on Fri, 11/11/2005 - 15:14.

Classification: News | Recent Publications

A new article just published in the Journal of Pediatric Endocrinology and Metabolism makes a compelling case for getting rid of all medical terms based on the root “hermaphrodite.” The authors (including two ISNA staff members and three ISNA Medical Advisory Board members) explain the problems with terms like “pseudo-hermaphroditism” and “true hermaphroditism.”

Why get rid of these terms? Because:

  • These terms are stigmatizing to patients and their families. We should all be working to reduce stigma, not add to it through medical care.

Do Frequency Rates Matter?

Submitted by April Herndon on Wed, 10/19/2005 - 12:35.

Now that we finally have a regular staff of five at ISNA, we find ourselves in the happy position of regularly having interesting discussions about our work, our mission, and our cause. One such discussion arose recently around the question of how frequent intersex is.

We had put our Programming Assistant Colleen Kiernan on the task of updating the frequency chart on our FAQ. Colleen soon hit a evidentiary wall, and posted her frustration on our staff intranet, as shown below. Our Director of Public Relations Jane Goto then replied with many important insights. So we thought we would share this dialogue.

More Evidence People Did Well without Surgery!

Submitted by April Herndon on Wed, 10/19/2005 - 12:00.

Classification: News

This comes from Christina Matta, author of a very interesting new article on the history of intersex: “Ambiguous Bodies and Deviant Sexualities: Hermaphrodites, Homosexuality, and Surgery in the United States, 1850-1904,” Perspectives in Biology and Medicine, vol. 48, no. 1, Winter 2005. We asked Ms. Matta to summarize for our visitors what she learned about whether people with intersex faired well or poorly in the era before pediatric “normalizing” surgeries became standard practice. Here is what she wrote:

To anyone who understands that intersex genitals are not a life-threatening condition, the predominance of childhood “normalizing” surgeries as a medical response to atypical anatomies is completely inexplicable. It is even more inexplicable given that historically, adults with intersex were, by default, completely in control of their anatomies. Even if they had reason to consult a doctor (and those who did almost always did so for reasons that had nothing to do with their genitals), very few individuals were interested in the “solutions” doctors spontaneously offered. In the first half of the nineteenth century, in fact, all doctors could do was tell patients that they were not the sex they thought, and to order them to stop wearing pants (or to start wearing pants!) or otherwise act according to more appropriate gender roles. (In Hermaphrodites and the Medical Invention of Sex, Alice Dreger tells the story of a Belgian doctor who, in 1886, exclaimed after examining his patient, “But my good woman, you are a man!”) But this was the extent of medical treatment for intersex, and there’s nothing to suggest that patients bothered to do as they were told.

Fat and Intersex?

Submitted by April Herndon on Thu, 09/22/2005 - 09:00.

When I came to work as the Director of Programming for ISNA, many of my friends and colleagues asked why someone with a background in the scholarship of fat politics would come to work in the intersex rights movement. As it turns out, the issues involved are strikingly similar, and I find more common ground each day. We’re doing so much good work here at ISNA that undoubtedly benefits people with intersex conditions and their families, but I also think our work benefits other people with stigmatized embodiments. By insisting that we understand both the social and medical issues involved (and which is which!), advocating for patient autonomy, and working to end the stigma and shame that often surrounds bodies that are different, ISNA helps set the stage for many groups of people to receive better medical care and social support. We hope you’ll support this important work. And I hope you’ll read on to find out more about what fat and intersex have to do with each other.

Program Educates Social Workers about Intersex Issues

Submitted by April Herndon on Tue, 07/05/2005 - 06:39.

Classification: News

Pam Farrell and Nina Williams, a member of ISNA’s Medical Advisory Board, are running a monthly reading group for social workers who want to learn more about intersex conditions and how to provide better psychotherapy for patients with intersex conditions. The group also seeks to educate other social workers and push for institutional change. This year, the group has focused on ISNA recommended readings and videos, heard Janet Green speak, and debated the issues raised by these materials. On October 22, 2005, group members will present a panel at the NASW-NJ annual LGBTI conference about how their education in DSDD has altered the way they think about gender and sexuality. When this group disbands in December, the plan is for current members to team up and lead groups of their own.

"Our Bodies, Ourselves" Includes Intersex

Submitted by Alice Dreger on Fri, 07/01/2005 - 10:07.

Classification: News

At the start of ISNA’s life, when Cheryl Chase wondered why the facts of intersex weren’t included in the women’s health bible, Our Bodies, Ourselves, some people told her intersex was a women’s health issue.

Kudos to the Boston Women’s Health Book Collective for today realizing it is! We’re thrilled that the new edition of Our Bodies, Ourselves includes a section on intersex written by members of ISNA. It even includes a note about ISNA’s mission and how to find our website.

We’re especially impressed that the editors included an excerpt from the autobiography of our Board Chair, Angela Moreno Lippert as previously published in full in Intersex in the Age of Ethics. Angela’s story is shocking and moving, and will help reach out to those Our Bodies readers who have suffered similarly—and will reach out to those who are committed to helping us push for progressive care for people with intersex. And it will be quite a reach since Our Bodies has sold more than four million copies!

Intersex and Homeland Security

Submitted by Alice Dreger on Fri, 06/03/2005 - 06:23.

Classification: News

Well, it had to happen sooner or later. Thanks to naive beliefs about sex and gender, the Department of Homeland Security finds itself arguing with the Board of Immigration Appeals about whether or not a person’s chromosomes determine her/his sex.

In its disagreement with Homeland Security, the Board of Immigration Appeals noted that the facts about intersex negate Homeland Security’s overly simplistic beliefs about sex and gender identity. In making its decision, the Board referred to legal scholar Julie Greenberg’s masterful Arizona Law review article called Defining Male and Female: Intersexuality and the Collision Between Law and Biology.

Real ID Act and Intersex Families

Submitted by Alice Dreger on Fri, 06/03/2005 - 05:42.

Classification: News

It’s not uncommon for the law to assume that everyone is born into two neat sex categories (male and female) and that everyone stays in the category in which s/he was first placed. Not so! It is inevitable that some people born intersex will tell us that the sex/gender category to which they were assigned was incorrect.

Unfortunately, it looks like U.S. legislatures are making it harder and harder for people with intersex to assume the legal sex/gender category that they personally identify with. For one example of legislation that can cause hardship to people with intersex, and to their families, read what our friend and ally Lisa Lees reports on “The Real ID Act of 2005”:

What's ISNA up to?

Submitted by Alice Dreger on Mon, 05/30/2005 - 08:30.

Classification: News

What’s ISNA up to at the moment?

Intersex Declared a Human Rights Issue

Submitted by Cheryl Chase on Tue, 05/03/2005 - 11:51.

Classification: News

Today the San Francisco Human Rights Commission issued A Human Rights Investigation into the Medical ‘Normalization’ of Intersex People, declaring that the standard medical approach to intersex conditions leads pediatric specialists to violate their patients’ human rights.

“In issuing this report, the San Francisco Human Rights Commission has essentially declared me a human being,” said Cheryl Chase, Executive Director of ISNA. “They have agreed that I—and children born like me—deserve the same basic human rights as others.” Chase, who was born with mixed sex anatomy internally and externally, went on: “No longer should we be lied to, displayed, be injected with hormones for questionable purposes, and have our genitals cut to alleviate the anxieties of parents and doctors. Doctors’ good intentions are not enough. Practices must now change.”

Intersex Declared a Human Rights Issue

Submitted by ISNA on Tue, 05/03/2005 - 09:26.

Classification: News

Today the San Francisco Human Rights Commission declared that the standard medical approach to intersex conditions leads pediatric specialists to violate their patients’ human rights.

“In issuing this report, the San Francisco Human Rights Commission has essentially declared me a human being,” said Cheryl Chase, Executive Director of ISNA. “They have agreed that I—and children born like me—deserve the same basic human rights as others.” Chase, who was born with mixed sex anatomy internally and externally, went on: “No longer should we be lied to, displayed, be injected with hormones for questionable purposes, and have our genitals cut to alleviate the anxieties of parents and doctors. Doctors’ good intentions are not enough. Practices must now change.”

Dr. Joyce Brothers Likes Our Work!

Submitted by Alice Dreger on Sun, 04/24/2005 - 16:52.

Classification: News

The well-known and well-regarded Dr. Joyce Brothers has just written about the intersex treatment controversy in a syndicated column appearing in The Seattle Post-Intelligencer and elsewhere. Judging by her Q&A’s on intersex, Dr. Brothers has taken a close look at what what we have to say and agrees with the logic of our recommendations. Thanks, Dr. Brothers, for seeing the importance of public education about people with intersex! We would like to note, though, that intersex is not the same as “ambiguous genitalia,” as Dr.

When gender assignment is delayed

Submitted by Alice Dreger on Thu, 03/24/2005 - 11:12.

Children born with intersex conditions are given gender assignments as boys or girls shortly after birth. Gender assignment is accomplished the same way for all children, whether they have an intersex condition or not: by figuring out which gender identity the child is most likely to feel as she or he grows up, and assigning that gender.

Sometimes it can take a few days or even a few weeks for the doctors to figure out which gender assignment (boy or girl) to recommend. There’s also a small but real possibility that the doctors will recommend a gender assignment different than the one the child will later express. This means that it is possible that the doctors will recommend your baby be assigned as a girl, but as your child grows up, it will be clear that he really feels and acts like a boy, or vice versa. (Doctors are not infallible fortune tellers of gender.) What, then, should the parents tell friends and family when they ask “Did you have a boy or a girl?” and a gender assignment hasn’t yet been made?

Cosmo: Good News, Bad News

Submitted by Alice Dreger on Sun, 03/13/2005 - 16:30.

Classification: News

Well, folks, good news and bad news:

The March issue of Cosmopolitan Magazine includes a big article on vaginas, called “The V-Zone: A Guide to Your Most Private Body Part.”

The good news first: We were so pleased to see that the article actually recognizes intersex and other kinds of sexual variation! Fact point #9 tells us “few lips [labia] are a perfect pair,” and #22 reports “some women “don’t have [a vagina].” Right on—we’re not born all alike!

The bad news? Cosmo suggests that the solution for having less than “ideal” genitalia is surgery. Get this: “Luckily, women with this rare condition [vaginal agenesis] can use a dilator or have surgery to construct a vagina and experience a relatively normal sex life.”

Scientists: Stop Risky Surgeries Now!

Submitted by Alice Dreger on Mon, 02/21/2005 - 17:43.

Classification: News

You may have seen ISNA in the news in the last two days! An important article directly linking www.isna.org went out over the Associated Press wire on Friday, and doubled our ordinary high level of web traffic. It was entitled “Surgery May Be Hasty for Unclear Gender” and has appeared in more than 100 national and local news outlets, including the New York Times, CNN, and NBC.

Check out the N.Y. Times if it didn’t appear in your local paper.

Update of our FAQ's

Submitted by Alice Dreger on Mon, 02/21/2005 - 17:40.

Classification: News

To better educate our audiences, we’ve updated the FAQ’s (Frequently Asked Questions). To take a look, just go to www.isna.org/faq.

A number of spiffy navigation tools have also been added to make your “travel” around the FAQ’s easier.

Those of you who are teachers will be especially pleased to hear that we’ve also included a way to access an printer-friendly version of the revised FAQ’s. Feel free to print that and use it in your classes with attribution to ISNA.

To continue to serve the thousands of visitors we get each month—new parents, adults who have just learned they have an intersex condition, clinicians, students, and teachers—we’ll keep augmenting, editing, and updating FAQs. (For example, we still need to complete the section on intersex conditions, and provide a segment on the biology of sex development.) But if you know an FAQ we should consider posting, please send it along to us.

Submitted by Alice Dreger on Mon, 02/21/2005 - 04:59.

Classification: News

A diverse collection of academics and activists gathered at a symposium on Intersex Education, Advocacy, and the Law held at the Benjamin N. Cardozo School of Law of Yeshiva University in New York City on February 22-23 co-sponsored by the Cardozo Women’s Law Journal and Bodies Like Ours. Panelists discussed

  • Classifying Gender: Cultural Imperatives and Legal Constraints

  • The Cultural [Il]logic of “Normalization” Surgery

  • Informing Consent: Whose “Best Interest” is at Stake?

  • New Critical Frameworks: the Colombia Decision and San Francisco’s Human Rights Commission Report

Intersex in Australia: More of Same

Submitted by Alice Dreger on Sun, 02/13/2005 - 16:17.

Classification: News

What has happened to people with intersex in countries outside North America?

Read the story of Tony Briffa of Australia at the website of Melbourne’s The Age. You’ll see there how the concealment-centered model of treatment developed at Johns Hopkins in the 1950s spread across the world, unintentionally hurting people with intersex as far away as Australia.

An important thing to note: Though the title of this article is “Choosing the Right Gender,” being assigned the “wrong” gender (the gender he didn’t ultimately identify with) is just a part of Tony’s story. He also tells a story of being medically displayed “like a freak”, being lied to and mislead, and struggling with his sexuality following his medical treatment.

Law and Order SVU does John/Joan story

Submitted by Cheryl Chase on Wed, 01/19/2005 - 17:15.

Classification: News | Recent Publications

On Jan. 18, 2005 NBC aired an episode (“Identity”) of Law & Order SVU closely mimicking David Reimer’s story (“the John/Joan case”) as a plot, right down to a vaporized penis, quotes like “easier to dig a hole than build a pole,” secrets and lies and a very unsavory representation of a doctor implicitly modeled after John Money. (Note that John Money is actually a psychologist, not a medical doctor.) If you see it pop up on the tv schedule in re-runs (often on the USA Network), check it out.

Who Will Make Room for the Intersexed?

Submitted by Cheryl Chase on Mon, 01/17/2005 - 10:56.

Classification: News | Recent Publications

Haas, Kate. 2004. Who Will Make Room for the Intersexed? American Society of Law, Medicine, and Ethics 30 (1):41-68. Available from http://www.cirp.org/library/legal/USA/haas1/.

Former Hopkins Psychiatry Director Condemns Sex Reassignments

Submitted by Cheryl Chase on Fri, 12/10/2004 - 11:52.

Classification: News | Recent Publications

But does the Urology Department listen to the Psychiatry Department?

“For children with birth defects the most rational approach at this moment is to correct promptly any of the major urological defects they face, but to postpone any decision about sexual identity until much later, while raising the child according to its genetic sex. Medical caretakers and parents can strive to make the child aware that aspects of sexual identity will emerge as he or she grows. Settling on what to do about it should await maturation and the child’s appreciation of his or her own identity.”

Paul McHugh is University Distinguished Service Professor of Psychiatry at Johns Hopkins University.

Miki Ann Dimarco confined in isolation because she's intersexed

Submitted by Cheryl Chase on Thu, 12/09/2004 - 17:11.

Classification: Law | News | Recent Publications

The Casper Wyoming Star Tribune is carrying an article about Miki Ann Dimarco. Early this year, a U.S. District Court judge found that 438 days of confinement in Pod Three, a maximum security four-cell segregated area that is used to house the Wyoming Women’s Center worst inmates, was not cruel an unusual punishment. Dimarco was found guilty of passing six bad checks, totalling $742.85. That’s not why she was confined all alone for over a year. Rather, prison officials decided to segregate her when they discovered that she was intersexed.

Dusen, Matthew Van. 2004. Separate and Unequal. Casper Star Tribune, December 8. Available online.

"Same Sex" Marriage? What Intersex Does to the Gay Marriage Debate

Submitted by Alice Dreger on Sat, 12/04/2004 - 16:53.

Classification: News

Thanks to all the hostility to gay marriage, it’s looking like judges in the U.S. are about to start on a learning curve now familiar to the International Olympic Committee. That’s because, to categorize people strictly into men and women—as both gay marriage prohibitions and sex-segregated sports require—you have to figure out for sure what makes a man and what makes a woman. And that ain’t simple.

In fact, the IOC has given up on what was once called “gender verification.” They’ve given up because they figured out what the U.S. courts apparently soon will: There isn’t any rational way to decide, in many cases, whether a person should count as a male or a female.

South Africa Human Rights Commission Investigates Intersex Interventions

Submitted by Cheryl Chase on Wed, 12/01/2004 - 13:13.

Classification: News

SOUTH AFRICA

Intersex children must be protected from temptation of parents to ‘fix’ them surgically.

December 01, 2004

By Wendell Roelf

A law on corrective surgery for children with ambiguous genitals - intersex children - was under consideration, the SA Human Rights Commission said yesterday.

“We are looking at the practice of surgery; do we need legislation to regulate this area, who should decide, when must the decision be taken?” said Judith Cohen, parliamentary officer for the commission.

The commission held a seminar on intersex children yesterday, asking whether gender “normalisation” surgery was in the best interests of the child.

Expanding Markets for Genitoplasty?

Submitted by Cheryl Chase on Mon, 11/29/2004 - 20:06.

The American Society of Plastic Surgeons, the largest organization of plastic surgeons, has not yet started tracking how many doctors are making “gynecologic cosmetic care” or “vaginal rejuvenation” their specialty, but notes that anecdotal evidence suggests demand for genital procedures is growing rapidly.

Read The Most Private of Makeovers by Mireya Navarro, in this week’s Sunday New York Times. And check out genital closeups of what these surgeons think is unattractive.

Navarro, Mireya.

Tips for Adoptive Parents

Submitted by Alice Dreger on Sun, 10/31/2004 - 06:59.

In response to our Tips for Parents, one woman wrote to say that she was adopting a child who had already had cosmetic genital surgery, and could we write guidelines for people in her position?

First off, we want to thank all parents—adoptive, foster, biological, and other—who provide love and care to children with intersex conditions. Good, open love is what all children need.

Now, take a look at our Tips for Parents. We would recommend that you follow the same basic idea: avoid being subject to the concealment-centered approach (which features incomplete information and uninformed decision-making) and insist that your child receives a patient-centered approach, one featuring honestly and openness. More specifically:

Washington Square News looks at Intersex

Submitted by Cheryl Chase on Tue, 10/26/2004 - 08:29.

Classification: News | Recent Publications

In her early 30s, Betsy Driver learned why she had never felt totally comfortable in her high school locker room.

When she four months old, Driver’s doctors removed her entire clitoris because it was unusually large for a baby girl, and, following doctor’s orders, her mother never told her. As a teenager, Driver never fully developed breasts and had to undergo a second surgery to reconstruct a vagina that was never there in the first place …

Llerena, Kim. 2004. Living in between, but no longer living in silence. Washington Square News, October 26.

"Same Sex" Marriage Panel Discussion

Submitted by Alice Dreger on Tue, 10/19/2004 - 11:47.

Classification: News

This just in from ISNA Board Member Thea Hillman:

On Sunday, October 12, I was a panelist at a Times Talk event entitled, "I Do, I Don't: Queers on Marriage", a panel discussion and Q&A with me, Patrick Califia, Michelle Darné, Carol Queen, Patricia Nell Warren, and Greg Wharton, moderated by Bill Goldstein, NYTimes.com/books founding editor. The event took place at the Koret Auditorium at The San Francisco Public Library.

My statements and responses to questions about marriage and queer culture centered on the failure of language around so-called "gay marriage" or "same-sex marriage." I talked about how these terms deny my experiences and the experiences of my community, which is made up of many sex and gender variant folks, namely transgender and intersex people. I spoke about attempts to legislate marriage based on current definitions of male and female fall apart when real human beings are put into the equation.

Urologists: Agonize over whether to cut, then cut the way I’m telling you

Submitted by Alice Dreger on Thu, 10/14/2004 - 14:08.

Classification: News

The American Academy of Pediatrics Section on Urology meeting in San Francisco on Monday, Oct. 11, showed evidence that just about every aspect of intersex care is now in question, but that, despite theoretical turmoil, many medical centers are continuing to provide scientifically and ethically questionable care.

Most notably—as we detail below—even though several leaders in pediatric urology urged colleagues to employ less invasive cosmetic genital surgeries, several presenters sent the troubling message that early, aggressive surgeries are necessary (despite a black hole of supporting evidence or ethical analysis).

Intersex Treatment as Standard Medical Practice, or, How Wrong I Was

Submitted by Alice Dreger on Fri, 10/01/2004 - 21:32.

In 1998 I published an article in the Hastings Center Report criticizing the standard of care for the treatment of intersex1. (Intersex is the general term used for a variety of conditions under which a person is born with something other than standard male or standard female anatomy.) I ended that article by arguing that the treatment of intersex was unlike anything else in modern-day medicine, that it looked like what George Annas had termed “monster ethics”—the treatment of supposedly “deformed” children by means that would otherwise be considered unethical2.

Soundprint Radio looks at intersex

Submitted by ISNA on Thu, 09/30/2004 - 11:04.

Classification: Recent Publications

Intersex, a 30 minute radio program produced by Dheera Sujan of Radio Netherlands is part of Soundprint’s international documentary exchange series, Crossing Boundaries. Listen online in Real Player format as a group of women with AIS talk about their lives.

“Not telling people about your condition is more difficult than having the condition itself.”

“We appeared on tv as a kind of protest against doctors who are still saying that no one should talk about this. We showed them that we can tell 900,000 people about it, and nothing bad happened to us. In fact, we had nothing but positive reactions.”

Effects of Clitoral Surgery (Minto et al)

Submitted by ISNA on Fri, 09/17/2004 - 19:26.

Classification: Recent Publications | What We're Reading

“Our results indicate that individuals who have had clitoral surgery are more likely than those who have not to report a complete failure to achieve orgasm and higher rates of non-sensuality—in particular, a lack of enjoyment in being caressed and in caressing their partner’s body.”

“Our findings suggest that adult sexual function could be compromised by feminising clitoral surgery. Infants and young children are powerless to oppose any procedures, so genital surgery for them is not just a medical issue but also a moral one. Debate over ethics with interested parties should be encouraged and clinicians should advance the debate and help individuals and families to make the best possible decisions by producing reliable information. Many surgeons will undoubtedly feel justified in doubting the findings of this study, and will fall back on the traditional response of claiming that current techniques are more advanced than the surgical procedures we assessed. Although surgery has advanced in many ways, this is not a valid reason for complacency. In this study surgery was done 8-40 years ago, and most individuals had undergone clitorectomy. Of the three sexually active participants who had undergone the newer technique of nerve-sparing clitoral reduction, however, two had the worst possible score for orgasm difficulties(orgasm subscale score of 9).”

Berenbaum: Management of Children With Intersex Conditions: Psychological and Methodological Perspectives

Submitted by ISNA on Fri, 09/17/2004 - 11:09.

Classification: Recent Publications

“Rearing children as intersex is not advocated by health professionals or activist organizations (including ISNA).” Thank you, Sheri!

“The lack of systematic outcome data makes decisions about genital surgery very difficult. There are insufficient data regarding the functional consequences of genital surgery, but there are also insufficient data regarding the effects on a child of living with atypical genitalia. It is likely that the effects of both genital surgery and genital appearance are not the same for all individuals. Perceptions of and responses to the situation may be more important than its objective nature, and psychological support may help families develop coping strategies to foster mental health. It is important to remember that decisions should be made in the best interests of the child and not the parents.”

Finally: A progressive medical text on intersex issues!

Submitted by Cheryl Chase on Tue, 09/14/2004 - 10:59.

Classification: Books | Recent Publications | What We're Reading

cover of Paediatric and Adolescent Gynaecology : A Multidisciplinary Approach

Paediatric and Adolescent Gynaecology : A Multidisciplinary Approach. Essentially an intersex textbook with a significant emphasis on psychological care (and on issues such as psychological support) with chapters by clinical psychologists like Lih-Mei Liao, Julie Alderson and Polly Carmichael.

Balen, Adam H., Sarah M. Creighton, Melanie C. Davies, Jane MacDougall, and Richard Stanhope, eds. 2004. Paediatric and Adolescent Gynaecology : A Multidisciplinary Approach: Cambridge University Press.

Physician's Rhetoric and Intersex Management

Submitted by ISNA on Tue, 09/14/2004 - 09:46.

Classification: Recent Publications

Hester, J. David. 2004. Intersex(es) and alternative strategies of healing. Ethik in der Medizin 16:48-67.
———. 2004. Intersex(es) and informed consent: how physicians' rhetoric constrains choice. Theoretical Medicine 25:21-49.
———. 2003. Rhetoric of the medical management of intersexed children. Genders 38. Available from http://www.genders.org/g38/g38_hester.html.

A Mother's and Daughter's Experience Rejecting Clitoral Surgery

Submitted by Alice Dreger on Tue, 09/07/2004 - 17:55.

The following are excerpts from a 1998 interview conducted by Alice Dreger and Cheryl Chase with an adult woman, identified here as “Sue,” and her mother, identified here as “Margaret.” Sue was born with a large clitoris, and against at least one physician’s recommendation, Margaret decided not to have a surgeon reduce the size of Sue’s clitoris.

Margaret came to this decision by following her practice of “examining the doctors.” She decided that the doctor who was bothered by Sue’s large clitoris was, like Freud, too phallic-centric. Having interviewed her obstetrician who saw many women with large clitorises and having been assured by the obstetrician that those women did well, Margaret decided to leave decisions about clitoral surgeries to Sue herself.

Tips for Parents

Submitted by ISNA on Tue, 09/07/2004 - 15:05.

The Intersex Society of North America (ISNA) is the premier resource for people seeking information and advice about atypical reproductive anatomies and disorders of sex development (DSDs). Since our founding in 1993, we have been offering policy advice, positive advocacy, and caring support for individuals and families dealing with DSDs. You can also obtain our more extensive Handbook for Parents by visiting www.dsdguidelines.org.

The following are questions we suggest you ask your child’s medical care providers. We also suggest you take and keep careful notes so that you keep track of your child’s medical history and all your options

ISNA Outeach 2004

Submitted by Alice Dreger on Thu, 08/05/2004 - 19:55.

Classification: News

ISNA works hard to educate the world about intersex. Over the last 11 years of our work, we have reached millions of people through our outreach work! Here's a small sampling of what we've been up to in just the first half of this year.

Just since January 2004:

Time magazine did a feature on intersex including interviews with Debbie Hartman and Thea Hillman (ISNA board members).

The popular online newspaper Slate did a feature article on our founder and Executive Director, Cheryl Chase, and on the work of ISNA.

The Management of Ambiguous Genitalia. Proceedings of a symposium. Lyon, France, April 2003

Submitted by ISNA on Fri, 07/23/2004 - 12:55.

Classification: Recent Publications

Another special issue on intersex. See table of contents at the BJU International (British Journal of Urology).

Most anguished title award goes to "How to make the least bad choice in children with ambiguous genitalia", by P.D.E. Mouriquand.

What is the agenda of the intersex patient advocacy movement?

Submitted by Cheryl Chase on Wed, 06/23/2004 - 13:21.

Classification: About | Recent Publications

Presented at the First World Congress: Hormonal and Genetic Basis of Sexual Differentiation Disorders, Tempe Arizona, May 17-18 2002

Chase, Cheryl. "What is the Agenda of the Intersex Patient Advocacy Movement?" Endocrinologist. 13(3):240-242, May/June 2003. Download pdf version.

Today, almost a decade after the Intersex Society of North America was founded, many people still misunderstand what criticisms the intersex patient advocacy movement makes of standard practice, and what reforms we are asking for. I’m pleased to have this opportunity to provide a summary of our recommendations for patient-centered care, and to contrast them with the current state of medical practice.

Federal Judge Finds Wyoming Prison Violated Constitutional Rights of Intersexual Prisoner

Submitted by Cheryl Chase on Tue, 06/22/2004 - 08:03.

Classification: Law

In what may be the first U.S. court decision to consider the constitutional rights of intersexuals, U.S. District Judge Clarence A. Brimmer ruled on February 18 in DiMarco v. Wyoming Department of Corrections, 2004 WL 307421 (D. Wyoming), that state prison officials violated the 14th Amendment Due Process rights of Miki Ann DiMarco when they consigned her to 14 months in a dungeon-like high security lock-up without affording any kind of hearing process for her to challenge that decision.

Seven Oaks Magazine interviews Alice Dreger

Submitted by Cheryl Chase on Tue, 06/22/2004 - 07:46.

Classification: Recent Publications

Seven Oaks Magazine interviewed ISNA's board chair Alice Dreger earlier this month.

Hui, Stephen. 2004. SEVEN QUESTIONS: Alice Dreger. Seven Oaks, June 7. Available from http://www.sevenoaksmag.com/questions/16.html.

Report on Human Rights Commission Hearing

Submitted by Alice Dreger on Wed, 06/09/2004 - 11:05.

Classification: News

Learn how to view the hearing online, or to order a DVD or a VHS tape.

This report on the San Francisco Human Rights Commission hearing on intersex comes to us from Peter Trinkl, board member of Bodies Like Ours:

On May 27, 2004, the San Francisco Human Rights Commission held a historic hearing on Intersex issues. It was the first public hearing held on Intersex issues in the United States. The hearing room at San Francisco City Hall was packed with intersex people and our allies.

At the beginning of the hearing, Marcus Arana, a discrimination investigator with the Human Rights Commission, briefly laid out the reasons for the hearing. He reported that the SF HRC had received complaints that intersex people were being subjected to infant genital surgery for the purposes of sex assignment without proper consent. While he acknowledged that some childhood genital surgery was necessary for medical reasons, such as providing a functional urinary canal, he expressed concerns about cosmetic surgeries meant to “normalize” the appearance of a child’s genitals. He also reported that around 1 in 2000 births. The politics of what constitutes an intersex condition is heavily involved in these figures.

David Reimer, in memorium

Submitted by Alice Dreger on Fri, 06/04/2004 - 11:19.

Classification: News

We’ve been trying to figure out what to say about the death of David Reimer. Though David was not intersex by the usual definitions, his story was like so many others we have heard from people with intersex conditions: Full of shame, secrecy, and trauma. Punctuated by hope, individuality, and love.

Though the follow-up stories of David Reimer from Milton Diamond and John Colapinto have made doctors stop and think, we know from our work that too many families coping with intersex are still subjected to shame, secrecy, and trauma. This won’t change until intersex is recognized as a psychosocial issue fully deserving of team care that foregrounds psychosocial support. But today, it is still primarily handled with surgeries meant to make intersex magically disappear. Enough pity and secrecy already. Let’s move toward honest, open care that plays on the strengths of families coping with intersex, rather than on their presumed weaknesses.

ISNA Transforms Itself

Submitted by Alice Dreger on Fri, 05/28/2004 - 06:39.

Classification: About

ISNA has been extraordinarily successful in its work to effect systematic reform in the social and medical treatment of people with intersex conditions. With the financial assistance of our donors, we have made substantial strides towards building a world free of shame, secrecy, and unwanted genital surgeries for people born with atypical reproductive anatomies.

ISNA was founded in 1993, and we enjoyed rapid growth especially in the last several years. But with that growth, we paid a high price in terms of exhausting our core staff and volunteers. We realized late in 2003 that we needed a new system, one which would be truly sustainable—one which would keep ISNA going until its work is done.

San Francisco HRC still wants to hear from you!

Submitted by Alice Dreger on Thu, 05/27/2004 - 06:49.

Classification: News

Although the date of the public hearing has passed, everyone is welcome to submit written testimony through June 25, 2004. You can send your statement by email (preferred) or postal mail to the coordinator. Click here for postal and email address.

Intersex Documentary Wins New Zealand's "Oscar"

Submitted by Alice Dreger on Tue, 05/25/2004 - 06:31.

Classification: News

Congratulations to long-time ISNA ally Mani Mitchell: The documentary film “Mani’s Story,” which traces Mani’s life and intersex activism, has won the Quantas Award for best television documentary in New Zealand! (This is the equivalent of the U.S. “Oscars.”) Also featured in the film are American intersex activists Angela Moreno (board member of ISNA) and David Vandertie.

This documentary was produced by Greenstone Pictures and is not currently available in the US. But you can get a copy of Hermaphrodites Speak! by making a donation to ISNA.

Sacramento Bee looks into intersex

Submitted by ISNA on Tue, 04/20/2004 - 15:43.

Classification: Recent Publications

The medical profession has traditionally viewed an intersex birth as a "social emergency," pushing to assign a child's sex immediately and perform corrective surgery as soon as possible, says Celia Kaye, a professor of pediatrics at the University of Texas Health Science Center at San Antonio. Doctors want to avoid traumatizing parents and help the child grow up normally, without confusion or ridicule, she says.

Read the complete article at the Sacramento Bee.

ISNA Discussed in "Savage Love"

Submitted by Alice Dreger on Thu, 04/15/2004 - 04:08.

Classification: Recent Publications

ISNA is mentioned in the famous "Savage Love" advice column of April 14, 2004.

The issue mentioned is familiar: an adult born with intersex who was "sex reassigned" to be female as a child, now wishing the parts s/he was born with were still there.

I've written a note of thanks to Dan Savage ("Savage Love" columnist) and asked him to clarify one thing:

Intersex conditions DO sometimes come with serious underlying health concerns. Therefore anyone who thinks s/he is intersex or that his/her child is intersex SHOULD seek medical advice to rule out (or address) health problems. We do not hesitate to recommend surgeries that address serious health problems (as when a child is born with intersex and no urinary outlet).

Progress in Intersex Care!

Submitted by Alice Dreger on Fri, 04/09/2004 - 11:15.

Classification: News

As ISNA enters its second decade of life, Cheryl Chase (ISNA’s founder and Executive Director) and I have been reflecting on the astonishing progress we’ve seen in attitudes towards people with intersex conditions. So many people now know of intersex, so many care providers are employing a patient-centered model of care. We still have a lot of work to do, but those of you who have helped over the years should be very proud of what has been accomplished.

Here’s just one sign of progress:

In a recent issue of the prestigious medical journal, BJU International, physicians S. M. Crighton and L.-M. Liao documented the “Changing Attitudes to Sex Assignment in Intersex.” Drs. Crighton and Liao point out that “surgical sex assignment and genital surgery in intersex are increasingly challenged now,” and that “it is not the good intentions of surgeons that are called into question.” Instead, clinicians are finally asking what evidence we have regarding what patients really need to be well in the long-term.

Raising Kids in a "Third Gender"?

Submitted by Alice Dreger on Wed, 03/31/2004 - 04:27.

Classification: News

The “Traditional Values Coalition” appears to be confused about ISNA’s mission, so I thought I would answer again a question we get all the time:

Does ISNA advocate raising children who have intersex conditions in a “third gender” category?

To anwer that, I’ll quote from the “Top Ten Myths about Intersex”:

MYTH #7: ISNA advocates doing nothing and raising intersexed babies in a third gender.

…We certainly would like to see people become less gender-phobic, but we don’t think dumping intersexed kids into a gender-phobic world with no gender or with a “third gender” is the way to go. We believe there are two problems with trying to raise kids in a “third gender.”

Reiner & Gearhart's NEJM Study on Cloacal Exstrophy - Review by Vernon Rosario, M.D., Ph.D.

Submitted by Alice Dreger on Mon, 03/29/2004 - 14:00.

Classification: Recent Publications

The following review comes from Vernon A. Rosario, M.D., Ph.D., former Chair of ISNA's Medical Advisory Board.

REVIEW BY VERNON ROSARIO:

Long-time ISNA friend and supporter Dr. William G. Reiner recently published a groundbreaking article with Dr. John P. Gearhart that gives further evidentiary support to ISNA’s mission. The article, “Discordant Sexual Identity in Some Genetic Males with Cloacal Exstrophy Assigned to Female Sex at Birth” was published in the prestigious New England Journal of Medicine (vol. 350, Jan. 22, 2004). They described a long-term follow-up study of a group of 16 chromosomally male (XY) individuals born with cloacal exstrophy. This is a rare birth defect affecting 1 in 400,000 live births—slightly more common in males then females. It is an anatomical defect beginning early in embryonic development and the most severe manifestation in the spectrum of exstrophy-epispadias (congenital anomalies of the bladder, genitals, and pelvis). The abdomen is not closed, thus exposing the gastrointestinal tract and urinary bladder. Frequently the intestine is shortened and malformed with the bladder. The anus may also not be open. In females, the clitoris may be split and there can be two vaginal openings. In males, the penis is short and flat, split in two, or entirely absent. It is frequently associated with abnormal kidney and spinal development (spina bifida, scoliosis, meningocele). The cause is unknown and there is no known means of prevention.

What We Have in Common with the American Cleft Palate-Craniofacial Association

Submitted by Alice Dreger on Fri, 03/26/2004 - 09:52.

Classification: News

This past weekend I gave the keynote address at the American Cleft Palate-Craniofacial Association meeting in Chicago. My talk was entitled "Facing History: Understanding Craniofacial Care in a Broader Cultural Context." I spoke about how there are common threads running throughout the personal narratives of people born with atypical anatomies, one of them being that what others see as simple "deformities" or sources of stigma are often experienced as livable, integral parts of subjects' lives.

The meeting was great; I learned so much from talking with the professional care providers for craniofacial anomalies! Here are a few of the things they know that those of us working to help families dealing with intersex need to know:

What’s happening at ISNA in 2004?

Submitted by ISNA on Thu, 03/04/2004 - 18:02.

Classification: News

In 2004 ISNA’s energies are focused on reforming U.S. medical education with regard to intersex.

Letter to The Sciences RE: The Five Sexes

Submitted by Cheryl Chase on Tue, 03/21/1995 - 16:00.

The following letter was published as Chase, Cheryl. 1993. Letters from Readers. The Sciences, July/August, 3.

As an intersexual I found Anne Fausto-Sterling's "The Five Sexes" [March/April] of intense personal interest. Her willingness to question medical dogma on intersexuality is unique and refreshing. I understand that she has not had the opportunity to meet with any "corrected" intersexuals; I believe that I can provide some perspective on the experience. Surgical and hormonal treatment allows parents and doctors to imagine that they have eliminated the child's intersexuality. Unfortunately the surgery is immensely destructive of sexual sensation and of the sense of bodily integrity. Because the cosmetic result may be good, parents and doctors complacently ignore the emotional pain of the child forced into a socially acceptable gender, his/her body violated by the surgery, and again during frequent genital examinations. Many "graduates" of medical intersex corrective programs are chronically depressed, wishing vainly for the return of body parts, and suicides are not uncommon. Some are transexual, rejecting their imposed sex. Follow-up of adults to ascertain the long term outcome of intervention is conspicuously absent.

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