It can sometimes be refreshing when your assumptions are blatantly exposed. I had this experience recently, attending a panel on intersex issues at Harvard.
Three women--two young and femme-y, and one greying with shoulder-length curly hair--sat at the panel table. "Interesting," I thought "they're doing a panel on intersex issues without any intersex people on the panel!" Moments later, two of the three women shared that they were intersex...the two young and femme-y women.
One was a Harvard student and was moderating the panel (while also participating) and the other was Robin Honan, a filmmaker who had come to share a trailer of her film on intersex experiences, "Ain't I a Woman." The third panelist was Lizzie Reese, who is working on a book about historical medical treatment of intersex patients, through the eyes of extremely judgmental doctors from the colonial period to the present.
Robin didn't realize she was intersex until she was 16. She wasn't getting her period, so her family took her to the doctor to find that she had "shadow" ovaries; she had tissue in the shape of ovaries, but they were non-functioning. Further testing revealed she had XY chromosomes, despite having a vagina. There are hundreds of variations of intersex, ranging from undescended testes to enlarged clitoriouses to no fallopian tubes but a vagina. So how common is intersex? The Intersex Society of North America has a great answer: "well, how do you define intersex?" They note that not XX and XY is 1 in every 1,666 births, but the number of people whose bodies differ from standard male or female is 1 in every 100 births.
For Robin, it was extremely challenging to come to terms with a new sexual identity in her teenage years. All of a sudden, she was not what she had assumed herself to be and dealt with a lot of shame and confusion. Now in her 30s, she is an outspoken advocate for intersex children's rights and for being outspoken about intersex people's rights. The 20 minute clip of her film was extremely moving (unfortunately I couldn't find it online anywhere) and featured people like Cynthia, whose parents sent out a birth announcement for "Steven," were told by doctors that their child was actually an intersex girl. They moved across the country rather than try to explain to their friends and family that they had an intersex child. There was Richard, who had 25 surgeries to make him more of a "boy." (25 surgeries on the most sensitive tissue on your body!)
The panelists explained that surgeries on intersex babies became very popular in the 1950s (and continues today) when anesthesia was no longer as dangerous as it had been. This led to doctors playing God, deciding whether it would be "better" for the child to present as male or female, many times performing surgeries without parental consent. Many parents did give consent for surgeries, but it was absolutely not informed consent. Informed would be explaining the prevalence of intersex people and talking about some of the many negative experiences intersex folks have had as a result of infant surgeries that they had no decision-making power in, but change their body for the rest of their life. These include, but are not limited to: painful sexual experiences, depression, and social isolation.
A fear of homosexuality (both then and now) has also been a reason for surgery; doctors and parents want to ensure that sexes remain "opposite" so that they will partner with the "right" sex in their later life.
Someone anticipated my question and asked how the panelists felt about being included in the LGBTQQI acronym. The women answered simply, include it if there's going to be programming and support on intersex issues, don't include it if not.
There is so much to demystify on the topic of intersex identities. Genital and gonadal diversity is one of many natural biological differences that humankind boasts, but it is one of the few that is hard to recognize. The historic (and current) negative and violent reactions from the medical community toward intersex people has led to physical and emotional pain, shame and the creating of a taboo. This panel's take-away message is that there should be no whispers, there should be clear facts and celebration of difference.
Organisation Intersex International--USA chapter
Brief Guidelines for Intersex Allies
Advocates for Informed Choice
Bodies in Doubt: An American History of Intersex by Elizabeth Reis