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On a Saturday morning in October 1996, about twenty people stood on Boylston Street outside the Hynes Convention Center with a banner and a stack of leaflets, waiting for the pediatricians inside to come out for lunch. It was, as far as anyone has been able to establish, the first public demonstration by intersex people in modern history, and it happened here. Thirty years later this is why October 26 is Intersex Awareness Day, and almost nobody in Massachusetts knows the day started on our own sidewalk.
The American Academy of Pediatrics was holding its annual meeting in Boston that week. A small group from the Intersex Society of North America came to picket it under a banner reading Hermaphrodites With Attitude, a name they had taken back on purpose, and they were joined by members of Transexual Menace, a transgender direct-action group that had come to stand with them. Max Beck, who was there, wrote the account we still rely on, and it opens on the weather: “On a glorious fall day, the like of which you can only find in New England, under a crackling, cloudless sky.” They handed out literature, they argued with doctors on the sidewalk, and they talked to anyone who would stop.
What they wanted was not complicated. Infants born with bodies that don’t fit the expected pattern were being operated on, routinely, to make their genitals look more typical, before they were old enough to have any say in it. Beck put the case to a television camera that afternoon in one line: “the treatment paradigm for ‘managing’ intersexuals is in desperate, urgent need of re-examination,” because early surgery leaves “more than ‘just’ physical scars and sexual dysfunction.” His sharpest point was about who the surgery was really for. The baby, he wrote, is not facing a medical emergency, since being intersex is rarely life threatening. What actually gets treated in that operating room is the distress of the adults.
The Academy sent out a public relations man with a press release saying that six weeks to fifteen months was the best window for genital surgery, and word that its officials would meet the press privately, inside, but had no interest in meeting anyone from Hermaphrodites With Attitude. That was the answer in 1996.
Intersex people are born with sex characteristics that do not fit typical binary notions of male or female bodies. Intersex is an umbrella term used to describe a wide range of natural bodily variations.
That definition is the United Nations’, from its Free and Equal fact sheet, and it’s worth reading twice, because the word gets used loosely by people who have never met anyone it applies to. Intersex describes bodies, and it covers variations in genitals, in internal organs like testes or ovaries, in hormones, and in chromosomes, and many of them are invisible from the outside and go unnoticed until puberty or later. A person can be intersex and be a man, a woman, nonbinary, straight, gay, or anything else, and most intersex people have the gender they were raised as. Being intersex is not the same as being transgender, and the two get confused constantly, which is a good reason for the day to exist at all.
Nobody has a clean number, and the honest version is a range. The Intersex Society used to say that if you ask medical centers how often a baby is born with genitals different enough that a specialist gets called in, the answer is roughly one in 1,500 to one in 2,000 births. Count the subtler variations, including the ones that surface years later, and researchers have put the figure as high as 1.7 percent of people. The UN prints the whole range, 0.05 percent to 1.7 percent, and adds the comparison that makes it land: the top of that range is about as common as having red hair.
So in a Fall River high school, or a New Bedford church, or the line at a Taunton coffee shop, there are intersex people, and you have met them. Almost none of them told you so, and after the century they’ve had, that’s not hard to understand.
Intersex Awareness Day did not come from an institution or a proclamation. In 2003 two advocates, Betsy Driver of Bodies Like Ours and Emi Koyama of the Intersex Initiative in Portland, were emailing about how to get anyone in the press to pay attention. Driver’s own account of it is refreshingly unromantic: they needed a date, they picked the anniversary of the Boston picket, she thinks it was Koyama’s idea, they put up a website less than a month beforehand, and in her words, that first year “nothing much came of it.” By 2004 there were events around the world. Two people and an email exchange, and now it’s on calendars in a dozen countries.
Here is the part that makes this our story twice over. In December 2019 the Massachusetts Medical Society passed a resolution supporting the principle that intersex children should not be operated on until they are old enough to decide for themselves, with the exception of genuine medical emergencies. The doctors, in the state where the picket happened, eventually said the thing the picketers had come to say.
Then in October 2020, Boston Children’s Hospital told reporters that it “will not perform clitoroplasty or vaginoplasty in patients who are too young to participate in a meaningful discussion of the implications of these surgeries, unless anatomical differences threaten the physical health of the child.” A few months earlier, Lurie Children’s in Chicago had gone further and apologized outright, saying that the old approach “was harmful and wrong” and that “we apologize and are truly sorry.” Those are the first cracks in a practice that ran unchallenged for half a century, and intersex advocates spent years of public campaigning to make them.
Kimberly Zieselman, an attorney who was running the intersex youth organization interACT at the time and who lives in Massachusetts, responded to the Boston Children’s announcement by naming her own history: “As an intersex woman who was raised in Massachusetts, I am proud that BCH finally recognized the dignity of intersex people. We must be able to live free from the threat of non-consensual medical interventions based on discrimination and fear of differences in sex anatomy.” She has written publicly, more than once, that her healthy internal testes were removed when she was a teenager at a Boston hospital, in a procedure that was never fully explained to her or her parents, and that she learned the truth decades later. Her memoir about it came out in 2020.
Massachusetts has no law on this. We looked, and there is no bill on the books and none filed under any title we could find, so nothing legally stops a hospital here from doing tomorrow what Boston Children’s stopped doing in 2020. The American Academy of Pediatrics, the organization those twenty people came to see, still has no policy against medically unnecessary infant surgery, thirty years on. The clearest professional statement in the country belongs to the American Academy of Family Physicians, which says plainly that it “opposes medically-unnecessary genital surgeries performed on intersex children.”
Internationally the record is less muddy. In 2016, speaking two days before Intersex Awareness Day, a group of United Nations human rights experts said states “must, as a matter of urgency, prohibit medically unnecessary surgery and procedures on intersex children,” and that intersex people themselves “should be the only ones who decide whether they wish to modify the appearance of their own bodies.” In April 2024 the UN Human Rights Council adopted its first resolution ever on intersex people, on combating discrimination, violence, and harmful practices against them. It passed with 24 votes in favor, none against, and 23 abstentions, which tells you both that it happened and how much of the world would rather not talk about it.
Get the words right, because they cost nothing. Say intersex, and say intersex traits or intersex variations. Retire the word hermaphrodite, which is medically wrong and has been used as an insult for a century, unless an intersex person uses it about themselves, which a few do. Skip the clinical language of disorders, which many intersex people find pathologizing. And do not guess about anybody. Whether a person is intersex is theirs to say, to whomever they choose, and speculating about a stranger’s body, an athlete’s especially, is the same old harm in a new outfit.
If you are a parent standing in a hospital being told that a surgery is urgent for a baby who is otherwise healthy, ask what happens if you wait, ask to talk to an intersex adult, and ask whether the operation is for your child or for everyone else’s comfort. Those are fair questions, and a good clinician won’t mind them.
And if you are intersex and reading this on the South Coast, the Network is yours. We are not a medical provider and we will not pretend otherwise, but we can point you at people who know what they are talking about, our events have space for you, the businesses and congregations on our Welcoming Wall have told us on the record that they are welcoming, and the phone gets answered by a person. The I has been sitting quietly in our acronym for years and it is not decoration.
Thirty years ago about twenty people stood outside a convention center in this state and were told that the doctors inside had no interest in meeting them. Everything that has changed since started on that sidewalk, and everything that has not is still on the list.
Sources: Max Beck, “Hermaphrodites with Attitude Take to the Streets,” published by the Intersex Society of North America in Chrysalis (1997), and the Academy’s press release reproduced alongside it; Betsy Driver’s account of founding the day and Morgan Holmes’s recollection of the picket, both at intersexday.org; the Intersex Society of North America on frequency and terminology; the UN Free and Equal intersex fact sheet, the 2016 statement by UN experts, and the Human Rights Council’s April 2024 resolution; Blackless and colleagues in the American Journal of Human Biology (2000); Human Rights Watch on the Massachusetts Medical Society resolution; The 19th on Boston Children’s Hospital; Lurie Children’s Hospital; Kimberly Zieselman in The Advocate (January 2020); the American Academy of Family Physicians; and the language guidance of GLAAD and interACT.