February ISNA News 2001

Thank you, ISNA donors! Benefactors: ($5,000 to $20,000 lifetime Dear Friend, total): Freema & James L. Hillman. We are proud to bring you the first issue of the new newsletter of the Society Patrons: ($2,500 to 4,999 lifetime total) Kirsten Vander, Steve Trentalange, Rick of North America. In an effort to make sure we can update you on our work several and Kristen Myers, Al Barr PhD. times a year, we decided to use a much simpler format than the old newsletter. That Sponsors: ($1,000 to $2,499 lifetime total) will let us continue to focus our energy on changing the treatment of intersex people Alice Domurat Dreger PhD & Aron Sousa and their families but still provide you with timely information. MD, Robin Mathias, Howard Devore PhD, In every issue of our newsletter, you’ll find out about important work we are doing Joan Whelan, Mark Holzbach & Dana Friis- to change the lives of intersex people. We could not have accomplished any of this Hansen, Hale Hawbecker, Linda Irish, , Mike Arashiba, Lightning Bolt without the help of our supporters. Please support our work with a financial Computers, Zella Luria, Thomas R. contribution, so we can be there for the families making difficult decisions about how Montgomery, Dale Gordon Stuart. to help their intersex kids. Please make a donation to ISNA today. Friends: ($500 to $999 lifetime total): Bob We have found that the only way to effect positive change is to deal with the core Myers and Sakiko Kimura, Alice issue—the invisibility and supposed shame of intersex—simultaneously in both the D’Entremont, United Church of Christ Wider medical and the social realms. Church Ministries, Philip A. Gruppuso MD & Through our media advocacy, we are reaching millions of people in the US and Martha R. Manno, Kate O’Hanlan MD & L onie Walker, Toby Meltzer MD, James A. abroad. Last year, the Discovery Channel broadcast “Is it a Boy or a Girl?,” an hour Webster, David Ananda Vandertie & Carol long documentary on the controversy over medical management, and the program has Sander, Joan L. Griscom, John Polito 2, also aired around the world. The film, which features Cheryl Chase and other ISNA Matthew D. Press & Elin Ulrich PhD, activists, has been nominated for a GLAAD award for outstanding TV journalism. We Martha Coventry, Candice Hellen Brown Elliott, Astraea Foundation Bessie Coleman have had very positive coverage in features in Discover Magazine, The Advocate, the Fund, Margaret Henderson, Hanny New York Times, BBC Horizon, Ms. Magazine, The Sciences, and many others. Visit Lightfoot-Klein, Robert Crutcher, N. Robert our web site for more information about our media advocacy successes, and to read Stoll. some of these articles online. Partners in Advocacy: ($100 to $200 In the medical realm, ISNA’s work has been nothing short of stunning. Many monthly): Kirsten Vander, John Polito 2, specialist clinicians now seek our help as they work on reforming their teaching and Cheryl Chase , Lightning Bolt Computers , Robin Mathias. ($15 to $99 per month): practices. In January, we wrote to over 700 pediatric endocrinologists, encouraging William Byne MD, Sherri Groveman. them to read about the history of the medicalization of intersex and offering them a copy of Alice Dreger’s and the Medical Invention of . Donations Grants: Arcus Foundation ($10,000), Gill Foundation ($10,000 matching grant), John to ISNA from these doctors, who are directly responsible for treating intersex children J. Winkler Memorial Trust ($1500), Small and their families, are beginning to roll in. Next month we begin shooting on a Change Foundation ($5,000), teaching video which will give medical professionals specific helpful guidance on how Resource Center ($4,000) , L.E. of to care for intersex children and their families. Bloomington IN ($500). This newsletter is part of a broader effort to improve communication with our And 427 more of you! ($35 to $499): We supporters and constituents. Our web site, www.isna.org, is another place to find the wish that we could recognize all of you in this column, but there s just not enough latest news, and we will soon add materials that are more helpful for first-time visitors. room! Julie Dorf and Jenni Olson, Jud Van We want to get your feedback on how we are doing. If we have not contacted you Wyk MD, Kristi Bruce, Lynnell Long, Dossie lately, please send us e-mail or mail. We would love to hear from you! Easton, Sydney Levy and Mark D. Hodgson, Mariano Castro-Magana MD, Phyllis Lyon and Del Martin, and Angela Moreno are among you. Please see our Yours Truly, website for the complete list.

ISNA News Subscriptions complimentary for ISNA donors. Others $35 per year (US and Canada). Robin Mathias Published by Intersex Society of North Development Director America PO Box 301 Petaluma CA 94953. www.isna.org Page 2 ISNA News February 2001

the courage and vision to make ISNA’s medical protocols. Chris brings to ISNA Medical change picks up speed first grant, a $10,000 challenge grant. See clinical experience in outreach and What a year it has been! In May, the our other foundation sponsors on page 1. support groups with the University’s Lawson Wilkins Pediatric Endocrine Though we expect quite a bit more Lesbian, Gay, Bisexual, and Society devoted a third of its annual income from grants in 2001, our success Affairs office, and as a student residence meeting to the controversy over medical depends upon you! We will continue to advisor. management of intersex. Cheryl Chase rely mainly on gifts, large and small, was invited to give the final address, from a broad base of individual donors. ISNA builds its board of “Sexual Ambiguity: A Patient Centered Nurturing a broad base of donors furthers directors Approach.” But Cheryl wasn’t the only our outreach and educational goals; it As you may know, ISNA is now a 501c3 one calling for change. Many of the provides long term stability; and it allows (tax exempt) corporation. As part of our physicians, psychologists, and ethicists us to be mission-driven. effort to grow ISNA into a strong, who spoke before her expressed We ended the year with a healthy cash sustainable national advocacy skepticism about the traditional, surgery- balance in the bank. That is crucial, as we organization, we have begun to build our focused treatment. William Reiner’s plan another year of aggressive growth, board of directors. presentation was the subject of an to $253,000. Alice Dreger, the leading expert on the Associated Press article that brought history and ethics of the medical widespread attention to the issue. Who’s who at ISNA management of intersex, is Chair of our The North American Task Force on In the second half of 2000, we began to board. Alice has published two books Intersex was formed, with the blessing of pay salaries for the first time in ISNA’s about intersexuality and many articles, eight professional medical societies, and history. Thanks to all of you who helped including one that appeared in the New it brought together people with widely with your gifts, time, and advice to get us York Times. diverging views, including intersex to this stage! Sherri Groveman is the Treasurer of people and other professionals who are Cheryl Chase is our Executive our board. Sherri is a tax attorney and an strong advocates of reform. Director, and is ISNA’s primary intersex activist—she founded the U.S. When intersex advocates spoke last spokesperson, advocate, media contact branch of the Androgen Insensitivity year at medical schools such as Albert and manager of the organization. In Support Group. Sherri has spoken widely Einstein College of Medicine, Denver addition, she maintains the web site, and her writings about intersex have Children’s Hospital, Michigan State writes numerous articles, processes the appeared in many professional University, University of Michigan, we mail, does the bookkeeping, represents publications. frequently found a very receptive and ISNA at conferences and on the North Julie Dorf is best known as the respectful audience, who wanted practical American Task Force on Intersex, raises founder of International Gay and Lesbian advice on how to reform their practices. money, and responds to requests for Human Rights Commission (IGLHRC). And of course, 2000 was the year of information. After Julie retired last spring as IGLHRC’s As Nature Made Him. In this book, In January we brought Robin Mathias Executive Director, we recruited her for author John Colapinto tells the life story on full time as Development Director and ISNA nascent board, and she is also our of David Reimer. After David’s penis Chief Financial Officer. Robin has board development consultant. Julie is was accidentally destroyed in a planned and managed our financial also on the international advisory council circumcision accident, Hopkins growth as a volunteer over the past 18 of the Global Fund for Women and the physicians attempted to remedy the months. She brings to ISNA her Astraea Foundation’s endowment situation by reassigning him . This experience in health care data analysis committee, and she is a Vice President of case was always used to prove that and a Masters of Public Affairs degree in the Vanguard Foundation. reassignment works—until David finally Policy Analysis and Public Finance. Sydney Levy is a key progam staffer came forward to tell us about his life. He As Development Director, Robin is at IGLHRC, and has worked with ISNA never developed a female identity, and responsible for expanding ISNA’s over the years on a number of projects, today lives once again as a man, married development program, which currently most notably our amicus brief to the and with adopted children. Of all the includes income raised through direct Constitutional Court of Colombia, which medical attention intended to make him mail and foundation grants. She plans contributed to the Court’s decision into a girl, David says, “They kept this year to expand ISNA’s fundraising creating new human rights protections for making me feel as if I was a freak.” program in major gifts, direct mail, board intersex children. Sydney brings of directors’ role in fundraising, house “passion, passion, passion” to his new Dramatic financial growth for parties, sales of videos, speakers’ fees, role as ISNA’s Board Secretary. ISNA in 2000 and 2001 and monthly donor program. Aron Sousa is an internal medicine Last year ISNA tripled its income, Chris Feick, our dedicated social work physician and a faculty member of the bringing in $100,000 (including $23,000 intern, is a student in the University of Department of Medicine at Michigan which was restricted for use in 2001). Michigan’s MSW program. Chris is State University. His scholarly interests The vast majority of this money came working under the supervision of social are in Evidence-Based Medicine and the through gifts from individual donors. worker/sex therapist Sallie Foley to ethics of using unproven medical We also began to win foundation create educational materials for treatments. He spends much of his time grants. We congratulate Gill on having counseling professionals and less harmful training medical students and Internal Page 3 ISNA News February 2001

Medicine residents, and Aron’s students microscopic appearance of your !) be drawn between “female” and are enthusiastic advocates of reform in And your gift would pay for a mailing to “intersex” or “intersex” and “male.” medical treatment of intersexuality. over 700 doctors who treat intersex That said, we do know that about 1 in Cheryl Chase founded the Intersex children. 2,000 children is born with genitals that Society in 1993. Her work has been are pretty confusing to all the adults in hailed in , Dateline, 1st National Conference on the room. We know this from the and Newsweek, and she is a frequent and 6th Annual Lobby statistics of how many newborn babies speaker around the country on intersex Day are referred to “gender identity teams” in and social justice. ISNA is proud to be a sponsor of the major hospitals. 1st National Conference on Gender and But wait, you say, 1 in 2,000 sounds Become an Advocacy Partner! 6th Annual Lobby Day, May 18-21 in rare! Well, if only 1 in 2,000 persons is ISNA is changing lives. Lynnell Long Washington, DC. This exciting weekend intersexed, then intersex is more common writes, “Years ago I would not have had will features three days of workshops, than cystic fibrosis, a condition most the courage to tell my story. I was too policy, politics and strategy on people have heard of. In fact, as Sherri ashamed to tell anyone else my ‘secret’ everything from gender law, gender and Groveman (now the Treasurer of ISNA) or the family secret.” Says Max Beck, racism, and gender discrimination on the pointed out in her article in Intersex in “Cheryl and ISNA have played a (literally) job to gender in the new cinema (“Boys the Age of Ethics, if you do the math, you life-saving role in my life.” Don’t Cry,” etc.), gender-based violence, realize that there are more intersexed We have changed the lives of parents gender and feminism, and issues of queer people in the world than there are Jewish and grandparents. “You are doing great and trans youth and elderly. people! things,” writes Doreen. “Had I had been The 1st National Conference on And if all of the intersexed people of more informed at the time of (her) Gender and 6th Annual Lobby Day is voting age had voted for a single diagnosis, perhaps I would not have hosted by GenderPAC, the national presidential candidate, the outcome of the opted for early surgery.” “You can never advocacy organization working to ensure election would have never been in doubt. know how deeply we appreciate the every American’s right to their gender, (Not that we’re telling you who you many hours and seemingly unlimited free from stereotypes, discrimination, and should have voted for—though you patience with our multitude of violence, regardless of how they look, act might want to know for future reference questions,” says Anita Jones. or dress or how others perceive their sex that Al Gore made a public, educated We have changed the lives of intersex or sexual orientation. statement about intersex at a meeting of children; quite a few doctors have now You can get more information by LGBT leaders. We were unable to find out stopped early surgery and parents are visiting their website at from the Bush team the Republican learning to raise their intersex children in www.gpac.org/ncg, calling them at platform on intersex.) love and openness instead of shame and 202.462.6610, or emailing them at In fact, maybe it’s time to print t-shirts secrecy. Dr. Phil Gruppuso had a young [email protected] Join ISNA there. ISNA that say, “I’m intersexed, and I vote!” patient whose parents went with his donors get 10% off! But wait, are you intersexed? That advice to avoid genital surgery after leads us to . . . seeing ISNA spokespeople on the Top ten myths about intersex MYTH #9: Only true hermaphrodites Discovery Channel. Pamela and John by Alice Dreger are really intersexed. have a son who was “reassigned” female as an infant. By age 10, it was clear she MYTH #10: Intersex is extremely The term “true ” is a nasty would never be a girl. We introduced rare. Victorian term invented in an effort to Pamela and John to Max Beck, who also First we need to acknowledge that it’s make intersexuality go away. (My first made the transition back to manhood hard to say exactly how frequent intersex book, Hermaphrodites and the Medical after infant female sex reassignment. is, because the sex spectrum is like the Invention of Sex, is all about this.) The Help us change more lives—become color spectrum; nature provides us with a term “true hermaphroditism,” a term that an Advocacy Partner with an automatic range where one “type” blends sounds fancy and special, refers simply to monthly contribution to ISNA charged to imperceptibly into the next. For our the condition in which one person has your credit card. We want to make it linguistic and social convenience, we both ovarian and testicular tissue, easier for you to support our work. By break that spectrum into categories. It whether or not that tissue is functional contributing to ISNA each month, you will makes it easier to talk about “that blue physiologically. But it is silly to count help create the financial base that ISNA car” or “that man over there.” But nature only these folks as intersexed! Their needs to improve the social and medical doesn’t tell us that there are 7, or 10, or internal and external anatomy varies all treatment of intersex people. As an 100, or ten million colors, and nature over the place, and many of them look Advocacy Partner you will help us direct doesn’t even know that there are two less “ambiguous” than other folks. Some more resources to our medical advocacy . We humans, with our words and of them have XX chromosomes, some of and public awareness campaigns. our cultures, decide how many categories them XY, and some of them have mixes If you give $50 a month or more, you to delineate. While the “male” and or variations on those themes. Keep in will also be eligible to be part of our True “female” types are relatively common, mind that nobody has two full sets of sex Hermaphrodite donor group (an honorary nature presents a full range of sex types, organs, as some people mistakenly status, having nothing to do with the and people decide where the line should imagine. People with ovarian and Page 4 ISNA News February 2001 testicular tissue, like other intersexed intersex to begin the category of female? intersex conditions and our culture, people, have one set of genitals, though (See Myth #1.) decide which gender the child is most they may be kind of in-between in Second, and much more importantly, likely to grow up to have. Sure, this appearance. we are trying to make the world a safe requires recognizing that the child might In practice, the term “intersex” is used place for intersexed kids, and we don’t express a different gender later. But the to refer to anybody who was born with think labeling them with a gender fact is that even with “corrective” surgery anatomy other than what the Powers That category that in essence doesn’t exist designed to “lock in” one gender, many Be define as “standard male” or would help them. (Duh, huh?) intersexed children transition gender “standard female.” What counts as ISNA recognizes that it can be damned later. “standard”? Check your phall-o-meter hard to be intersexed, or to have an We also have to recognize that (purchase online at ISNA’s website), and intersexed child. That’s why we exist. everyone’s gender assignment is stay tuned for a later newsletter, which That’s why we don’t advocate “doing preliminary. Mine was, yours was, so is will explore the deep and oh-so-hot nothing.” What we do advocate is my son’s. Intersexed people are more question, “Who really is intersexed?” providing parents of intersexed likely than others to transition , For now, on the topic of who is newborns—and within a couple of years, but everyone, intersexed and not, has that intersexed, let’s move on to dispel . . . intersexed children themselves—with potential. And it is worth remembering honest and accurate information about that the idea of “locking in” a gender Myth #8: If you re transsexed, then intersex, psychological counseling by using “corrective” surgery feeds into . . . you re intersexed. professionals who are not gender-phobic, This myth comes from our nutty cultural medical help for any real medical MYTH #5: Surgery makes normal- notion that your identity has to find its problems, and especially referrals to looking genitals. basis in your anatomy. It’s just like the other people dealing with the same This simply isn’t true in the vast majority old-fashioned (sexist) idea that if you’re a issues. Time and again researchers have of cases. As Cheryl Chase, the Executive strong woman, you must really be a man found that, no matter what the Director of ISNA, noted in Intersex in the inside. In fact, it’s the same kind of condition—being gay, dealing with a Age of Ethics, “Surgery is good at stereotype that assumes that all black serious disease—peer support, even if removing structures . . . it is much less people are lazy. Aren’t we past the point informal, saves families and lives. useful for creating structures.” ISNA of believing that one type of anatomy ISNA believes that intersexed children believes that medically necessary necessarily maps to only one type of and adults should not be subject to surgeries should be employed when a identity? Get over it! surgeries designed to “make the genitals child or adult’s physical health is Transsexed people are sometimes look normal” without their explicit threatened. We believe that, for example, people who were born intersexed, but far consent. (And consent of your parents if a child’s urine is not draining in a more often they are people who were isn’t the same as your consent. Think healthy way, the child should receive born with “standard” male or female about it—would you want your parents medical treatment for that problem. But anatomy. By a common definition, making medically unnecessary decisions “cosmetic” surgeries designed to make transsexed people are people who were about your sexuality?) Some people think genitals look “normal” are not medically assigned a gender that doesn’t work for surgery is the only possible medical necessary. them. ISNA supports the right of all response to intersex. Not so! Everyone Intersexed genitals are not diseased! people, regardless of what their body agrees that intersex is a psycho-social They just look different. And don’t go looked like when they were born, to issue, so why not deal with it as a giving into . . . assume the gender identities that makes psycho-social issue first and foremost? sense to them. This leads us to . . . This leads us to . . . MYTH #4: Once surgery is better, we won t have to worry about intersex. Myth #7: ISNA advocates doing MYTH #6: You can t raise an When is it ever going to be OK to risk a nothing and raising intersexed babies intersexed child as a boy or girl baby’s future sexual function, fertility, in a . without surgery. and even life, just because her genitals Sorry, gender warriors, that’s not us! We Of course you can! When people ask me force you to realize gender and sex aren’t certainly would like to see people whether my baby is a boy or girl, do I simply dichotomies? Who are you to become less gender-phobic, but we don’t have to show them his genitals to answer decide she wouldn’t be happy with the think dumping intersexed kids into a their question? No, I tell them, “He’s a genitals she was born with? gender-phobic world with no gender or boy.” To gender a child, we give that If it is true that intersex cosmetic with a “third gender” is the way to go. child the label of “boy” or “girl” and surgeries are getting better (and we lack We believe there are two problems with thereby float them into the (admittedly the data to know), then why not let the trying to raise kids in a “third gender.” often problematic) gender stream of our intersexed person himself decide when, First, how would we decide who culture. in his own opinion, the likely benefits to would count in the “third gender”? How How would we decide what gender to him of the surgery outweigh the burdens would we decide where to cut off the give an intersexed baby? Doctors and and risks to him of that surgery? category of male and begin the category parents should consider an intersexed Keep in mind, too, that surgeries of intersex, or, on the other side of the baby’s genitals and physiology and, using designed to “correct” intersexed genitals spectrum, where to cut off the category of the best knowledge they have of various will always, by definition, carry with Page 5 ISNA News February 2001 them the message that intersex is I don’t have a smooth transition to the What can you do? For starters, don’t shameful and bad. And we don’t think next myth, so let’s move on to . . . give into . . . intersex is shameful or bad. Nevertheless, we keep running into . . . MYTH #2: John Money is responsible MYTH #1: My little contribution to for all of the troubles that have ISNA can t possibly make a difference. MYTH #3: Corrective cosmetic befallen intersexed people. What? You doubt our powers to change surgeries make parents forget their Psychologist John Money became widely the world on a shoestring budget! kid was born different and undoes all known through John Colapinto’s book, Consider the fact that in the last year, their confusion, shame, guilt, and As Nature Made Him. Money often with just a few thousands of dollars, we fear. argued that you could make any kid a girl have provided educational material to Hello? This might work if the surgery or a boy, as long as you made the genitals tens of thousand of people, supported being done was a lobotomy on the look “right.” It turns out gender identity doctors and activists working for positive parents. “Normalizing” surgery just gives is much more complicated than that, but reform, put intersex on the national parents this message: Your kid is a freak, unfortunately legions of doctors thought agenda, and helped a few wonderful we had to correct it, don’t talk to anyone Money was right and did “normalizing” intersexed people realize that they are not about it because this is a really scary, surgeries in an attempt to make intersex alone. shameful condition. go away. Remember what , that There is no question that the parents I While it is true that a lot of doctors gender maven, said: “Never doubt that a talk with whose children had justified their work via Money’s own small group of thoughtful committed “normalizing” surgery still have all the work, it is also true that burning Money citizens can change the world: Indeed it’s confusion, shame, guilt, and fear after the in effigy won’t make any difference in the only thing that ever has.” surgery. Some parents say they are even the lives of the five girls who today had We’re sure that right after that, she worse off. Some have ended up with their clitorises cut down by a surgeon added, “Send money!” Help us now end disabled kids. Others have wound up who thinks no one can live with shame, secrecy, and unwanted genital with more guilt after realizing they risked intersexed genitals. Every time you sit surgeries for people born with atypical their children’s sexual function and around and blame Money, ask yourself sex anatomies. With your help, we can fertility. Many worry openly that their what you’ve done today to try to see that make the world a safer place for people kids will later accuse them of not tomorrow there will be only four children born intersexed. accepting them as they were. subjected to medically unnecessary surgeries on their genitals.

Yes! I want to help ISNA build a world free of shame, secrecy, and unwanted plastic surgery now!

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