t 13 years old, Sean Saifa Wall was admitted to hospital with pain in his groin. He says that he was given very little information about what might be causing it, and doctors didn’t discuss different options for treatment with him. He was told that his testes had to be removed immediately.
“I remember before surgery… I asked the nurse what was going on, and [she] was saying that I have these gonads that need to be removed. I’m 13 – I don’t know what gonads are.” The nurse told Saifa that it was because “they’re not good”. To Saifa it sounded logical: “If it’s not good and it’s in my body, it probably should be taken out.”
But today he still doesn’t know what, if anything, was dangerous about keeping his testes or what was causing the pain.
Not too long after the surgery, he remembers one conversation in particular: “The surgeon was talking about how he wanted to create a vagina. The way he described it… it sounded barbaric.” Saifa says, recalling that he was sat in the surgeon’s room in horror.
“My mum was to my right… and I was probably turning green, and [she] looked at me and said, ‘Do you want to go through with this?’” Saifa immediately said no. “I remember the surgeon was saying, ‘We’re going to shave down the clitoris.’ And I was like, this all sounds painful and horrible. I think, in that second, that one moment, that was what spared me from genital surgery.”
Reference:
- The 2006 Consensus Statement on Management of Intersex Disorders, also known as the Chicago consensus.
- A 2012 European Commission report on discrimination against trans and intersex people. [PDF]
- A paper, published by the European Agency for Fundamental Rights in 2015, that examines the legal situation of intersex people from a fundamental rights perspective.
- The text of Malta’s Gender Identity, Gender Expression and Sex Characteristics Act, passed in 2015. [PDF]
- The bill introduced by Ed Clere to the Indiana House of Representatives, which proposed preventing medically unnecessary gender assignment procedures being performed on intersex children while in the care of the state.
- dsdfamilies: A UK-based support group for families with children, teens and young adults who have a DSD.
- dsdteens: A UK-based support group for teens and young adults with a DSD.
- AIS-DSD Support Group: A US-based support group for people of all ages with a DSD/intersex condition.
- ILGA-Europe: A Brussels-based advocacy group – the European branch of the International Lesbian, Gay, Bisexual, Trans and Intersex Association.
- Interface Project: A collection of stories told by intersex people about their experiences.