Intersex Society of North America Is Founded

The Intersex Society of North America, founded in 1993 by intersex activist Cheryl Chase, revealed the often secretive genital surgeries and gender reassignments of intersexed infants. The organization has brought intersexuality into public discussion and has advocated for increased sensitivity and understanding within the medical profession.

Date 1993

Locale Seattle, Washington

Key Figures

• Cheryl Chase (b. 1956), founder of the Intersex Society of North America

Summary of Event

It is believed that one out of every two thousand children are born intersexed, that is, with ambiguous genitalia. Because the 1950’s was the height of Freudian psychiatry, which, among other things, placed great emphasis on the significance of external genitalia to “normal” human growth and maturation, the medical profession thought that the answer to ambiguous genitalia was to operate quickly to ensure that the child’s genitals would look as “normal” as possible.

The procedure often was kept secret from the child’s parents to further the chances of reinforcing the “assigned” gender. When parents were informed, they often were given partial information. Many were told that their child’s genitals did not fully form, and that surgery was required to “fix” the “anomaly.” Most doctors did not tell parents that the surgery was essentially experimental, nor did they inform parents that their child could be wounded physically and emotionally. For decades, the surgical procedures and their secrecy were common practice.

In the 1990’s, intersex activists, as they came to be known, began speaking out against these unquestioned medical interventions. Activists came together after obtaining their medical records or experiencing sexual or medical problems and then learning about their medical histories. The main thing that united them was the anger they shared about how they were treated: Their variant or ambiguous genitalia was treated like a disease or an anomaly (hence the term “ambiguous”) and was “fixed” in secrecy.

At the time, there was little actual research data to back up the activists’ claims of secrecy by the medical profession, but that did not stop Cheryl Chase, the first person to break the silence surrounding the cosmetic genital surgery of intersexed individuals. Chase founded the Intersex Society of North America (ISNA) in 1993, which has since brought light to the experience of intersexed individuals and has altered the way medical professionals approach intersex births.

Chase was born intersexed, so doctors thought the best thing to do was to label Chase a boy. Her parents named her Charlie, but eighteen months later doctors “reassigned” her as a girl. Chase’s parents were counseled by doctors to have their daughter’s clitoris removed, to change her name, and to relocate to a town where nobody knew the family. This surgery left Chase with a permanent loss of sexual sensation and an inability to reach orgasm.

According to its Web site, the ISNA “is devoted to systemic change to end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female.” The organization’s program includes diagnosis, gender assignment, peer and professional counseling, and support for patients wanting surgery and who are mature enough to make informed decisions about the procedure. The ISNA has a patient-centered approach to care, and its agenda (the first sentence of each item below) is educational in focus:

1. Intersexuality is basically a problem of stigma and trauma, not gender. It is the social importance given to nonambiguous gender that makes doctors feel that they are doing the “right thing” by performing surgeries and keeping them secret. The real harm though comes from the stigma and trauma intersexed individuals face.

2. Parents’ distress must not be treated by surgery on the child. It is clear that parents also need psychological and emotional support, but decisions about the care of the child must be made only with the child’s best interest in mind.

3. Professional mental health care is essential. Currently only a small percentage of persons with intersex conditions receive professional psychological support either as children or as adults.

4. Honest, complete disclosure is good medicine. Parents need full disclosure from the medical profession about their intersexed children to help make informed medical decisions, and patients need full disclosure to help them understand their intersexed bodies. Full disclosure normalizes rather than stigmatizes intersexuality.

5. All children should be assigned as boy or girl, without early surgery. Assigning gender at birth is a legal and social requirement, but surgery is not, and, therefore, it should not be performed automatically. The newborn’s gender should be assigned only after a comprehensive examination and diagnosis, based on the best guess for the most likely gender development of the child.

Significance

A body of scholarship on intersexuality has emerged because of ISNA’s activism. Historian Alice Dreger, psychologist Suzanne Kessler, and biologist Anne Fausto-Sterling have all written important works that complement ISNA’s positions. Breaking the silence about intersexed people and their families, and the scholarship, have resulted in significant changes in the medical approach to intersexuality. The impact that ISNA’s work has made on the medical profession is by and large its greatest contribution and has helped to make the lives of intersexed individuals less shameful and secretive.

The ISNA has brought intersexuality into mainstream media. A popular online magazine, Slate, in an article called “The Cutting Edge,” discussed the positive ways that Texas Children’s Hospital is dealing with intersex births. Also, ISNA board members and staff have been called upon by diverse media to discuss the topic.

Bibliography

Atkins, Dawn. Looking Queer. New York: Haworth Press, 1998.

Chase, Cheryl. “Hermaphrodites with Attitude: Mapping the Emergence of Intersex Political Activism.” GLQ: A Journal of Lesbian and Gay Studies 4, no. 2 (1998). Reprinted in The Transgender Issue, edited by Susan Stryker. Durham, N.C.: Duke University Press, 1998.

Cohen-Kettenis, Peggy Tine, and Friedemann Pfafflin. Transgenderism and Intersexuality in Childhood and Adolescence: Making Choices. Thousand Oaks, Calif.: Sage, 2003.

Colapinto, John. As Nature Made Him: The Boy Who Was Raised as a Girl. New York: HarperCollins, 2000.

Dreger, Alice. “’Ambiguous Sex’ or Ambivalent Medicine?” Ethical Issues in the Medical Treatment of Intersexuality. Hastings Center Report 28, no. 3 (1998): 24-35.

‗‗‗‗‗‗‗. Hermaphrodites and the Medical Invention of Sex. Cambridge, Mass.: Harvard University Press, 1998.

‗‗‗‗‗‗‗, ed. Intersex in the Age of Ethics. Frederick, Md.: University Publishing Group, 1999.

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

Hegarty, Peter, and Cheryl Chase. “Intersex Activism, Feminism, and Psychology.” In Queer Theory, edited by Iain Morland and Annabelle Willox. New York: Palgrave Macmillan, 2005.

James, Stanlie M., and Claire C. Robertson, eds. Genital Cutting and Transnational Sisterhood: Disputing U.S. Polemics. Urbana: University of Illinois Press, 2002.

Koyama, Emi, comp. Introduction to Intersex Activism: A Guide for Gay, Lesbian, Bi, and Trans Allies. Petaluma, Calif.: Intersex Society of North America, 2001.

Preves, Sharon. Intersex and Identity: The Contested Self. New Brunswick, N.J.: Rutgers University Press, 2003.

Sharpe, Andrew N. Transgender Jurisprudence: Dysphoric Bodies of Law. London: Cavendish, 2002.