An interview with ISNA founder, Cheryl Chase
By Allie McLaughlin
Though none of these impressions are accurate, we have had little else to go on--and we owe our ignorance to the prevailing practice of pediatric surgeons. Since the inception of modern western medicine, infants born with ambiguous genitalia have been treated as one of nature's abominations, freaks of nature who are swiftly, and according to some surgeons, "mercifully fixed" through genital surgery.
The current controversy surrounding the treatment of intersexual newborns focuses on informed consent: i.e., whether a pediatric surgeon provides accurate, unbiased information to the parent/guardian of the interesexed child about the possible outcomes of surgery vs. non-surgery.
Ample testimony from intersexed adults who underwent neo-natal surgery suggests that non-intervention is a far better way to proceed. Accounts of sexual dysfunction, urinary tract complications, etc. (see table) ---not to mention the psychological effects of severe depression and suicidal tendencies--- are prevalent. Meanwhile, the few intersexed adults lucky enough to have escaped genital surgery report no complications.
Cheryl Chase, founder of ISNA (Intersex Society of North America) and editor of the ISNA newsletter Hermaphrodites With Attitude, is at the forefront of advocacy for adult intersexuals and the campaign for informed consent in the treatment of intersexed infants. Chase, an intersexual who has suffered a life-long physical and emotional battle as a result of her genital surgery, offers an eloquent and compelling voice for the intersexed community.
Can you tell us when it was you first knew about your intersexuality?
Some time after the first surgery, a few years but still elementary school age, my parents told me that I had been born with an "enlarged clitoris," and that it had been removed when I was an infant, and that the surgery was just a check to see if everything was OK, and I shouldn't talk about this with anyone else. By the way, at the time I didn't know what a clitoris was.
By age 19 I believed the story enough to do some research in the medical library. I came to the (wrong) conclusion that my clitoris had been enlarged by an application of progestin to my pregnant mother. This is fairly common, and there are plenty of women at ISNA who lost their clitorises in that way. So I was determined to get my medical records. The physicians I asked for help evidently couldn't imagine how they would deal with me after they showed me the records, so they lied, saying "We can't find your records, and we don't understand why."
When I finally managed to obtain three pages of summary, with the help of a woman gynecologist, I learned for the first time that I had been a boy for the first 18 months of my life, with male name, birth certificate, blue pjs, the whole deal. The "boy" was admitted to the hospital, diagnosed variously as "true hermaphrodite," "pseudohermaphrodite," and there was mention of a phallus. A clitorectomy was performed, then the boy's name on the admission form was crossed out and a girl's name scribbled over it.
My gynecologist at the time said, "It seems as if your parents weren't sure at first if you were a boy or a girl," then handed me the report, saw me out of her office, and wrote a letter to the hospital where they performed the operation, praising their work and telling them how swell I was doing.
Needless to say, I cannot agree with her evaluation of my state. If I had been in poor emotional shape before, this was a blow that I could not have imagined. I was so filled with shame that I couldn't even talk about it with anyone.
Can you tell us what effect the surgery has had on your life?
In a positive sense, it has given me a mission. I put all my energy into study, and became quite well educated and very successful in my career. I founded ISNA to provide the sort of help to others that I so desperately needed and couldn't get, both because I was ashamed and because it just wasn't available.
On the negative side — after I started speaking out about what had happened to me — my mother and two sisters cut off relations with me. So, I've lost a family and they've lost a daughter/sister. Also, my sisters have a huge resistance to having children, and I suspect that is related to the their knowledge of the circumstances of my birth. My father died of cancer when I was 19. In my last conversation with him, he told me that I had been a bad kid, hard to deal with, ever since I was born and that, since my three siblings and I had been treated identically, the fault must lie in me and not with he and my mother. The effect has been absolutely devastating on my entire family.
For instance, the Raman-Wilms paper wasn't intended to address this question at all, but they needed the frequency of genital anomalies in order to probe for steroid effects on pregnancy.
In the latest ISNA newsletter there were two complaints from intersexed folks
who'd been selected for female reconstruction and who'd had less than positive results. Are there complaints as well from those who'd been reconstructed as males?
Strangely, there is a strong impulse to discount what intersexuals have to say about intersexuality (even among feminists, who should be more sophisticated about cultural authority). In order to counter that, I actively recruited allies whose status provides them with cultural authority to speak about what is still understood as a medical problem. These include university professors in such fields as medical science, psychology, sociology, and human sexuality; therapists in clinical
practice; and psychiatrists--the only category of MDs who have shown a readiness to believe our testimony and question treatment protocols.
Anne Fausto-Sterling and Alice Dreger, both academic friends of ISNA, will shortly publish books which analyze the medical treatment of intersexuality as culturally motivated and criticize it as harmful to its patients.
In the Spring of 1996, three ISNA members traveled to NYC to present our take on genital surgery at a symposium titled Update on Pediatric Plastic Surgery, at Mount Sinai. The symposium was essentially a way to market Sinai's services to other area hospitals, and included a half day on genital surgery. Symposium leaders had immediately rejected our proposal, tendered months ahead of time, to present a patients' panel, either during or after the symposium. We were able to set up, against their obstruction, in a nearby room, immediately following the symposium.
In the Fall of 1996, with logistical support from the direct action group, Transexual Menace, intersexuals calling themselves Hermaphrodites with Attitude picketed the annual meeting of the American Academy of Pediatrics. The AAP refused to speak with activists and issued a position statement asserting that "The Academy is deeply concerned about the emotional, cognitive, and body image development of intersexuals, and believes that successful early genital surgery minimizes these issues." Further public demonstrations are planned for 1997.
Dr. Howard Devore (PhD psychologist, private practice in psychotherapy) will be doing case presentation at the Amer Psychiatric Association annual meeting in San Diego, May 1997, on therapy with an intersex person who was profoundly harmed by medical attention, esp. genital surgery.
Joycelyn Elders (see below for description of her involvement in IGM (intersex genital mutilation), is doing a book tour. If she comes to your town, ask her publicly why she has refused to speak with
intersexuals about why they get sex changes and clitorectomies, and why an American clitorectomy is less barbaric than an African one.
Joycelyn Elders, celebrated by feminists for the openly pro-sex stand which led to her dismissal as Clinton's Surgeon General, is a pediatric endocrinologist. Yet there was no feminist outcry when, in a 1994 New Yorker interview, she talked about her career as a pediatric endocrinologist: "We would just make them girls. Because you can't make a good penis, but you can make a pretty good vaginas. I always taught my students, 'I can make a good female, but it's very hard to make a
male.'"
Elders has ignored letters and telephone calls from ISNA asking her to talk with us or to reconsider her position in light of their experience. Judy Simmons, author of a Ms. article celebrating Dr. Elders, (Simmons, 1995), did not reply to a letter from ISNA asking her to consider writing about pediatric endocrinology and genital mutilation of intersex infants. Neither has Jennifer Baumgardner, an editor at Ms. followed up on our request to report on the intersex movement. Curiously, Ms. did publish a very early warning, from two prominent feminist biologists, that intersex treatment amounted to genital mutilation, but it apparently sank without a ripple.
Further Reading
Chrysalis: The Journal of Transgressive Gender Identities, Vol. 2, No. 4, Summer, 1997. (forthcoming)
Dreger, Alice. 1996. Hermaphrodites in Love: The Truth of the Gonads. In Science and
Homosexualities edited by V. Rosario. New York: Routledge.
Kessler, Suzanne. 1990. The medical construction of gender: case management of intersexual infants. Signs: Journal of Women in Culture and Society 16 (1):3-26.
Chase, Cheryl. 1997. Hermaphrodites with Attitude: The emergence of intersex activism. GLQ. forthcoming.
Dreger, Alice. 1995. Doubtful Sex: The Fate of the Hermaphrodite in Victorian Medicine.
Victorian Studies Spring 1995:336-370.
Chase, Cheryl. 1996. Re:Measurement of evoked potentials during feminizing genitoplasty:
techniques and applications. Journal of Urology 156 (3):1139-1140.
Bibliography
Raman-Wilms, Lalitha, et al. "Fetal Genital Effects of First-Trimester Sex Hormone Exposure: A Meta-Analysis." Obstetrics & Gynecology 1 January 1995.
By adolescence I did learn what a clitoris was and couldn't find mine, nor learn to masturbate. But it was impossible, for several years, for me to believe that they had actually done that to me.
Do we know the percentage of infants born with ambiguous genitalia?
When and how did you get involved in ISNA?
I noticed that "Out" magazine had an article on intersex people in their September 96 issue. Have you read it? Would you recommend it?
I realize that the biggest hurdle ISNA has to surmount is the issue of informed consent. What seems to be the progress in getting the medical establishment to speak the truth about purely cosmetic neo-natal genital surgery?
Can you discuss the sorts of activities ISNA is engaged in--aside from the newsletter? Are there any campaigns supporters can sign onto? Any upcoming legislation we should know about?