Yesterday Cindy Stone presented a keynote speech at the National LGBTI Health Summit. A full-time faculty member of Indiana University’s Kelley School of Business, Stone is an intersex activist and educator who speaks to college students and health professionals around the Midwest about intersex conditions. She is part of a national support group working to identify avenues of help for parents and affected children and teens, volunteers with various LGBT groups, and has worked in Indiana University’s Gender Studies Department.
Approximately 1 in 2,000 of the babies born every day are intersex – the baby’s sex falls somewhere in between the typical male/female definition. Intersex conditions run in her own family, and Cindy shared with us her personal journey as well as answering some common questions about being intersex and talking about best medical practices for intersex individuals. Her goal is to remind us that counseling and support is critical for helping anyone dealing with intersex. She works hard to reduce cosmetic surgeries performed on children that can harm their genitals and are not reversible.
What is intersex? Intersex is a general term for many conditions in which a person is born with something other than the standard male or standard female anatomy. One misconception is that intersex individuals have two sets of genitalia, both male and female – they do not. If an intersex condition is externally visible at birth, the genitalia is often referred to as “ambiguous,” looking like a small penis or an enlarged clitoris. Intersex is now commonly referred to in the medical field as a disorder of sexual development (DSD), though Stone does not like to frame intersex as a disorder.
What are some of the ethical controversies that surround intersex conditions? Ethical controversies include when doctors should disclose patients’ medical history, whether attempts to “normalize” genitals that are non-standard via surgery is appropriate, and whether doctors should prescribe intersex patients hormones to “normalize” anatomy and behavior.
What is the best medical practice for intersex individuals? Stone advocates for a patient-centered model that goes beyond medical care and includes trained psychologists and social workers for counseling and support, especially when teens or young adults are newly diagnosed. Connecting young people and adults with others who are intersexed or who are the parents of intersexed children is important so they can give each other peer support outside of the clinical setting to help validate their feelings and experiences.
She maintains that all medical decisions should be made by a group of providers with the child’s best interest in mind. Stone advocates against performing cosmetic genital surgery on intersex infants. Cosmetic surgeries done on babies can rob individuals of a healthy satisfying sex life for the rest of their life.
When is surgery appropriate? Surgery is appropriate for an intersex child when a real medical problem exists, like the inability to urinate. Cosmetic surgery to “fix” the ambiguous genitalia, however, is not necessary for gender assignment.
Are most intersex individuals raised as female or male? Stone reports that most people with an intersex condition are women, for two reasons. First, cosmetic genital surgeries were historically performed (and in some medical institutions, still are performed) on infants with ambiguous genitalia soon after birth, and creating female genitalia is an easier surgery. Second, one of the most common intersex conditions is androgen insensitivity syndrome (AIS). Individuals with AIS have XY (male) chromosomes and testes. However, their body is insensitive to the androgens (which includes testosterone) produced by the testes, so their bodies develop as females.
Are there intersex conditions that result in male alignment? Yes. A few intersex conditions that result in male alignment of the genitalia include 5 alpha reductase, partial androgen insensitivity syndrome (as opposed to complete AIS), mixed gonadal dysgenesis, Kallman Syndrome, and Klinefelter’s Syndrome.
Are most intersex folks gay? There is no “real” representative data on the sexual orientation of the intersex population in the United States. However, the percentage of individuals who identify as lesbian, gay, or bisexual in the National Androgen Insensitivity Syndrome support group mirrors the percentage of individuals that identify as LGB in the U.S. population at large.
Can intersex adults have good sex lives? Assuming no cosmetic genital surgery in their childhood – usually yes.
Can intersex adults reproduce? Stone’s good-humored answer: “No, but we sure can practice!” Most intersex individuals are born sterile.
Why not create a “third” sex? Stone reports that nearly all intersex adults say they never wanted to be raised a “third sex”. Her priority is children’s safety, and she believes that school-aged children should generally represent themselves as one gender or the other. Also, Stone noted, who would be the one to decide whether a person was M, F, or I?
The take home message: Stone wants us to recognize that sex and gender are not binary systems, and like there is fluidity in gender there is also fluidity in sex. Cindy’s fundamental belief is that, “I was born to be a woman, I just took more a circuitous path to getting there than the average woman.”
Resources for more information:
- The Intersex Society of North America, www.isna.org
- Bodies Like Ours: Intersex Information and Peer Support, www.bodieslikeours.org
- Dr. Alice Dreger’s website, www.alicedreger.com
- Article recommended by Stone “Can women marry if they have testicles?“
- Video clip with Dr. Dreger on Oprah “Shedding Light on Intersex Conditions“
- Meet Katie, an intersex medical student who was on Oprah.