Improving Health Care for Intersex People

October 26 is Intersex Awareness Day, an annual observance that highlights the human rights issues faced by intersex people around the world. The date was chosen to mark the anniversary of the first public demonstration by intersex people in North America. On October 26, 1996, intersex advocates protested in Boston outside the annual conference of the American Academy of Pediatrics to draw attention to the practice of involuntary, non-consensual genital surgery that was – and unfortunately, still is – commonly performed on intersex children at birth.

Today, understanding of intersex people has improved since that conference, but the medical community still has a long way to go to create a health care system that truly meets the needs of intersex patients. The Fenway Institute has released a primary care guide called Affirming Primary Care for Intersex People 2020 that outlines some ways that providers can create respectful, affirming care environments for intersex people.

Intersex is an umbrella term that refers to those with a wide range of natural variation in sex characteristics and development that falls outside traditional conceptions of female or male bodies. Although biological sex has traditionally been seen as binary (female or male) in many cultures, the reality is more complex. Variations may occur in the chromosomes, external genitalia, gonads (testes or ovaries), hormone production, hormone responsiveness, internal reproductive organs, or any combination of these, among others.The percentage of people who are intersex depends on how intersex is defined. If all variations of reproductive or sex characteristics are included in the definition, experts say that approximately 1 in 58 people, or 1.7% of the population, is intersex.

Starting in the 1950s, the prevailing medical approach to treating intersex infants and children emerged as an attempt to “correct” the appearance and function of atypical genitalia. Surgeries also aimed to prevent the possibility of a child growing up to have non-heterosexual relationships,” the guide explains. “Often, families feel pressured to consent to surgeries on their child without being given sufficient mental health counseling, peer support, or information on alternatives to surgery. The majority of these surgeries are not medically necessary and can be delayed until the individual can participate in the decision. There is no evidence demonstrating the benefits of cosmetic genital surgery to a child’s long-term mental or physical health, nor is there evidence of any risk to delaying the procedures until the individual can decide if they wish to have the surgery.”

These genital surgeries are in fact often harmful both physically and emotionally. Post-surgical complications may including scarring, chronic pain, loss of sensation, urinary and sexual dysfunction, and other complications that require repeated follow-up surgeries. Many intersex people also report symptoms of post-traumatic stress disorder, depression, feelings of loneliness, and fear of intimacy due to childhood surgeries performed on them before they were old enough to consent. In addition, surgeries performed at an early age can assign a genital appearance that does not align with the individual’s gender identity, causing even greater emotional distress.

“Intersex people are often made to feel like medical curiosities,” the guide says. “Adults report long-term emotional consequences from repeatedly undergoing intrusive, objectifying, and medically unnecessary genital examinations and photography as children. Providers should keep in mind that even a medically necessary genital examination can re-traumatize an intersex patient… Providers must also avoid asking intrusive questions not directly relevant to the patient’s presenting health concerns. Such questions reinforce shame, stigma, and feelings of difference, and can exhaust a patient who is tired of educating their providers.”

In many cases, providers have concealed medical information about intersex patients from these patients and their families. In previous decades, it was not uncommon for doctors to not even inform parents of the reason why their newborns were being operated on. “Concealing information from intersex people (including youth) delays the process of self-acceptance and increases shame and stigma,” the guide says. “Patients and their families need full disclosure of medical information and options so they can make informed decisions that are appropriate to the child’s developmental stage…For adult intersex persons who only recently learned of their diagnoses, primary care providers can help them access medical records, understand their medical history, and engage with mental health professionals and peer support as needed.”

Click here to access the full primary care guide.




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