![]() “Then I took a breath and started reading and the first thing I saw on the first page was ‘Male pseudo-hermaphrodite, complete female phenotype. “ I just sat in the parking lot and didn’t even read them at first-I just put them in date order,” Ruth said. ![]() He said no, so she waited in the parking lot until he left that night, broke in, and stole them. Ruth drove to the office of the endocrinologist who had treated her throughout her childhood and requested her records. He told me ‘I’m not sure what you have, but if I can see your medical records I can explain it to you.’” Ruth told Human Rights Watch: “After my vaginal repair surgery, I had my first encounter with a truly compassionate and candid doctor. Then, one night when she was 32, she hemorrhaged while having sex, so she rushed to the hospital. Ruth attended a private university, started a lucrative career, and got married to a man. “I developed PTSD and dissociative states to protect myself while they treated me like a lab rat, semi-annually putting me in a room full of white-coated male doctors, some of whom took photos of me when I was naked.” “Doctors always deflected my questions and stonewalled me when I asked why I had so many appointments,” she said. Ruth, now 60, spent much of her youth questioning the constant medical attention, including surgeries, she received in her early childhood in the 1960s. Many intersex people did not learn about their conditions until they accessed their medical files as adults-sometimes as late as in their 50s. In some cases, doctors instructed parents to conceal the diagnosis and treatment from the child, instilling feelings of shame in parents and children both. This history of surgery was also a history of shame and stigmatization. Other operations include gonadectomies, or the removal of gonads, which result in the child being forced onto lifelong hormone replacement therapy. Such surgery carries the risk of pain, nerve damage, and scarring. These operations include clitoral reduction surgeries-procedures that reduce the size of the clitoris for cosmetic reasons. But in recent decades, many doctors have defaulted to advising early irreversible surgery on intersex children. Healthcare providers are an important source of information and comfort amidst such confusion. Whether parents are alerted to their child’s intersex traits at birth, puberty, or another point in life, they can struggle with confusing information and advice. Information about intersex traits can be overwhelming. Others-such as gonads or chromosomes that do not match the expectations of the assigned sex-manifest later in life, such as around puberty. Some intersex traits-such as atypical external genitalia-are apparent at birth. But even so, surgery continues to be practiced on children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred. As detailed below, there have been changes in practice in recent years, with many doctors now advising against surgery on infants and young children. In this report, based on interviews with intersex adults, parents of intersex children, and medical practitioners working with intersex people, interACT and Human Rights Watch document the fall-out from that medical paradigm, and the failure of the medical community to regulate itself effectively. Doctors began recommending surgical solutions to the supposed “problem” of intersex traits. During the 1960s, however, and based largely on the unproven recommendations of a single prominent psychologist, medical norms in the US changed dramatically. Sometimes the intersex people experienced harassment and discrimination as a result of their atypical traits but many lived well-adjusted lives as adults. Parents then reared them per social gender norms. ![]() Until the 1960s, when intersex children were born, the people around them-parents and doctors-made their best guess and assigned the child a sex. ![]() Around 1 in 2,000 babies is different enough that doctors may recommend surgical intervention to make the body appear more in line with those expectations. The chromosomes, gonads, internal or external genitalia in these children-intersex children-differ from social expectations. In fact, as many as 1.7 percent of babies are different from what is typically called a boy or a girl. But sex, in reality, is a spectrum-with the majority of humans appearing to exist at one end or the other. ![]() We are taught that sex is dimorphic: simply male or female. Biology classes often oversimplify a fundamental reality. Intersex people are not rare, but they are widely misunderstood. ![]()
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