My Body/My Choice: Make space to talk about intersex human rights

I’m a WA representative for Intersex Peer Support Australia (IPSA), a national intersex-led charity that provides peer support to people with intersex variations and our families.

In my role, I get to meet many other people with intersex variations and parents, and we get to understand the difficulties and joys that Intersex people have to deal with throughout our lives.

I was born in WA back in 1967 with a condition known as Classical Congenital Adrenal Hyperplasia or CAH. It’s a severe and rare condition that affects approximately 1:15000 babies born each year throughout the world. When a baby is born with this condition, girls can have atypical appearing genitalia and in boys, enlarged genitalia.

Uncertainty regarding gender assignment can represent psychosocial trauma and social stigma for the parents. The recommended treatment approach from paediatric physicians is to offer cosmetic genital reconstructive surgery to “normalise” the child. These surgical procedures are technically complex and can lead to permanent irreversible long term harm to the child.

As a young child I was given surgery to normalise my genitalia because, in the opinion of the physicians, I didn’t have a typical female appearance. My parents were not consulted or given options, they were not told of the harming aspects of surgery; paediatric doctors would always talk about the benefits of surgery, and ideas that girls would look like a typical female, be able to have children and be able to have intercourse.

In a surgeons eyes this was all that mattered.

I received irreversible, life changing surgery, surgery that was very experimental and very brutal. Surgery that violated all my human rights as a child.

I remember my trips to hospital each year for check ups, to be stared at by doctors and student doctors, never worrying about my mental health, only ever concerned about what was beneath my pants. I remember numerous photos taken of my naked body for journals and for other reasons unbeknown to me.

I was informed at the age of 10 that I wouldn’t be able to have children, and I was told that I had had surgery but never given any details.

I went to a Perth hospital right through my childhood, probably twice a year, and saw numerous doctors but not once was I told anything about my surgery or what they did. Never once was I offer counselling or a psychologist to talk to about my worries or how to deal with life as an adult.

It wasn’t until many years later when computers become available that I started to investigate the surgical procedures that were performed on CAH children of my era. This is when things started to come together. I was never offered MY medical records, it wasn’t until many years later when legislation changed and I was now able to apply for my medical records through ‘Freedom of Information’ that I finally discovered the truth about myself.

Data on the long term outcomes of surgery still remain uncertain some 70 years after some of the first documented procedures were recorded. Even so, genital “normalisation” surgery still remains a priority with surgeons and parents.

I’m not against surgery, I’m against surgery that we as Intersex children cannot consent to or be involved in the decision making processes. Who knows how many children’s lives have been destroyed and how many have lost their lives due to the unnecessary need for children to fit in with society expectations. We need to stop unnecessary surgical procedures on Intersex children when it’s not a medical emergency.

OUTinPerth recently shared a news story that claimed to identify ‘LGBTI’ priorities and actions in WA. My story, and those of adults and children with intersex variations, and our families, were missing. Our stories are not being told, and not being shared, and this has to change.

Our stories need to change. Infants and children shouldn’t have to go through the surgeries I went through. This needs to be on the WA government agenda. But I’m not comfortable being visible. So much needs to change to make it possible for people with intersex variations to tell our stories in public, and not suffer the burden of misconceptions.
Those misconceptions can lie in the stories that parents are still told about surgery, and it can also lie in the stories that people tell about ‘LGBTI’ people. Please make space for us to tell our stories, and make space to create change, even while we need to maintain our privacy.

Thanks to Morgan Carpenter at Intersex Human Rights Australia for supporting me telling my story.

Learn more at Intersex Human Rights Australia and Intersex Peer Support Australia.

Name withheld at the author’s request

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