Intersex. It’s a word that’s been around since 1917, but I didn’t learn it until I was in my 50s.

Maybe my parents and teachers didn’t think I needed to know it, Or, more likely, they didn’t know the word themselves because for generations, parents of intersex babies were told to keep that information quiet – sometimes even from their own children.

That silence became easier to maintain in the mid-20th century, when “normalizing” surgeries on intersex infants became standard practice. The new specialty of pediatric surgery was gaining momentum, and many doctors were guided by a theory – now discredited – that a child’s gender identity depended more on how they were raised than on their biology.

Since it’s likely that others in the general population are as unaware of the term intersex as I once was, I thought I’d shed some light on the word since there’s been a renewed insistence in some circles that there are only two sexes: male or female. People who make that claim are either misinformed or deliberately ignoring reality.

Intersex is a general term used for a variety of situations in which a person is born with reproductive or sexual anatomy that doesn’t fit the boxes of “female” or “male.” This can include variations in chromosomes (such as XXY or XO), gonads (such as ovaries, testes or both), genitals (such as ambiguous genitalia or a mix of male and female characteristics), or hormones (such as atypical levels of estrogen, progesterone or testosterone).

Being intersex is a naturally occurring variation in humans, and it isn’t a medical problem. Yet, starting in the 1950s, doctors began performing surgeries on intersex babies and children to make their bodies fit binary ideas of “male” or “female.” These surgeries were rarely medically necessary and often done in secrecy.

The Ann & Robert H. Lurie Children’s Hospital of Chicago became the first hospital in the U.S. to publicly apologize for performing medically unnecessary cosmetic genital surgeries on intersex infants and children without their consent. The hospital issued a statement July 28, 2020.

In its apology, the hospital said, “We empathize with intersex individuals who were harmed by the treatment that they received according to the historic standard of care, and we apologize and are truly sorry.”

Lurie Children’s Hospital pledged to change its policies, committing to not perform irreversible genital procedures unless medically necessary or until patients are old enough to participate meaningfully in making the decision for themselves.

After this, Boston Children’s Hospital announced in October 2020 that it would stop performing two specific types of intersex surgery on children too young to consent. These apologies came in response to an advocacy campaign primarily led by the Intersex Justice Project and the organization interACT.

Despite increased public awareness and those two public apologies, doctors continue to perform medically unnecessary, irreversible surgeries on intersex infants and children without their consent. Why does this continue? The answer is complicated and appears to involve a lot of factors. Here are just two:

• First, for decades, pediatric urology and endocrinology training programs have treated “normalizing” surgery as standard care. Many physicians were trained under the assumption that ambiguous genitalia needed to be “fixed” early to prevent future distress. Once a practice becomes embedded in medical culture, it can take a generation or more to reverse.
• Second, discomfort with ambiguity still drives many decisions about intersex children. Parents often feel pressure – from doctors, relatives or religious communities – to choose a sex assignment quickly, and physicians may encourage surgery to prevent future stigma. Yet, because public understanding of intersex variations remains limited, fear rather than medical need often shapes those choices. Until society grows more comfortable with sex diversity, unnecessary interventions will continue.

When I finally learned what intersex meant, I realized how much silence shapes what we think we know about sex and the human body. The challenge for all of us is to listen, to question and to make space for realities that don’t fit neatly into two boxes. The more openly we talk about intersex people and their rights, the closer we get to a world where every person’s body is treated with dignity rather than doubt.

LGBTQIA+ (I for intersex) is a rather large umbrella, and there is a difference between each subgroup. What ties these groups together is the need for greater understanding and acceptance by the larger population.

That’s why PFLAG exists. PFLAG strives to create a caring, just and affirming world for LGBTQ+ people and those who love them. Won’t you join us? For more information, email pflagsaukvalley@gmail.com. Follow us on Facebook or check out our website at pflagsaukvalley.org.

• Sarah Schlegel is president of PFLAG Sauk Valley.