July 2, 2013 / Ranson, West Virginia, USA
Hi, my name is Karen Walsh. I was born with a difference of sexual development, a DSD, called complete androgen insensitivity syndrome. What this means is that, although externally I looked and do still look just like a woman (because that’s what I am), internally I had a Y chromosome and testes that were in my abdomen. They didn’t know this until at 18 months of age I was in the hospital for what they thought was going to be a hernia repair. But when he was in there the surgeon chose to remove the testes and that’s caused me a lot of problems during most of my life including the fact that he advised my parents to lie to me.
Let me quote you something from the medical journal article that he wrote about me because this is really pretty telling. He said, and I quote, ‘Bilateral orchiectomy was performed to avoid the possibility of malignant degeneration to allow her to continue life as a female, and to allow the child some chance toward normal psychic development.’ Unquote.
Well, you know, lying to a child about giant scars that they have across their abdomen and having the child know that you’re lying, that’s pretty damaging to your psychosocial development. So what I need to tell you is No Body Is Shameful™, and by that I mean two things. Number one: No body (the physical body that you’re born with) is shameful. If that’s the way you’re born that’s the way you’re born. The second thing I mean is nobody (no person) is shameful either and you shouldn’t be made to feel that way.
Some things that you need to know about people with DSDs: We need to have our own bodily integrity just like any other human walking around on the planet and that was taken away from me. Kids have to be able to trust their parents and doctors and when they’re lied to like this you’re taking away any basis that they can have to trust you. If your child has a DSD that makes you (the parent or doctor) confused about what their sex is -- don’t do anything to them. Let them become old enough and they can tell you what their sex is, and then your job is to listen and respect that.
I have come to terms with this and a lot of people with DSDs have come to terms with this. But the way that that’s done is through interaction with other people who are like you, joining support groups of families and other individuals who have these issues, and learning from them and helping them. Sometimes the best way we can help ourselves is by helping others.
Last but not least: Please stop worrying about the fact that your child is different, or your patient is different.
It’s like Temple Grandin said, ‘I am different, not less.’ ©