Throughout my childhood I had regular hospital appointments. This was at our very big but local hospital and it would usually involve missing a day of school, which always seemed to result in missing some major school gossip as something exciting always seemed to happen on the day that I was away. As many things do in childhood, the appointment took on a routine of its own. There was always the driving around and around the car park looking for a space, followed by walking along the endless corridors and trying to guess whether the door in front needed to be pushed or pulled – and then finally realising that you could work this out by the shape of the handle. The murals on the walls were the first sign that you were entering the world of paediatrics and we would eventually find the clinic and sit and wait to be seen.
The first thing that always happened was a weight and height check by the nurse, who was also a Mum from my swimming club. It was only years later that I realised how stressful this was for my Mum – and how worried she was that someone she knew, had access to my medical records. The fear that someone else knew that I had Complete Androgen Insensitivity Syndrome. Following this, there would always be the wait to see the doctor, which seemed to take hours, but eventually my name would be called.
The meeting with the doctor would usually start with a discussion of my growth chart and how tall I was, usually hovering just above the 90th centile and I liked seeing how my height followed the curve. Sometimes I would also be sent for an X-ray of my wrist to try and work out an estimate of my final adult height. I would usually be taken into the clinical area to be examined, which usually involved (in medical language) inspecting and palpating the area around my inguinal canal – or (in non-medical language), a genital inspection and feeling under the top of my underwear and along my groin area. I had no idea why any of this was being done. I was told that I had hernias, which always seemed slightly strange and something to feel ashamed of, although I didn’t really know why. I remember asking about hernias and being told that it was a bit of muscle that can poke out through your stomach (definitely non-medical language) and that this had happened to a friend of my Granddad. I remember feeling confused about this as I was young and could see no muscle poking through anything. Towards the end of the appointment, I would be asked to sit outside in the waiting room. This always seemed like an even longer wait and I would wonder what they were talking about without me. What was I not allowed to hear? Afterwards, they would tell me that they were talking about how well I was doing or talking about ‘the surgery’ that was looming in my future. I was a child and just accepted this – it was all my normal.
I never felt traumatised by these appointments, they were just one of the many strange events of childhood that become your normal. Nobody was unkind to me and nothing was painful – I was measured and stared at and inspected, but didn’t think there was anything especially unusual about me. I just accepted that this must be what happens to anyone who needs ‘a surgery’ sometime in the future. It was filed alongside other routine childhood moments like going to the dentist or even having my hair cut. It is only looking back later that I realised my normal was not normal at all, but all part of the many layers of shame and stigma that made the reality of my body ‘something that should not be named’.
I’ve met other people who share my history of being born with different sex development and having a childhood punctuated by hospital visits, investigations and examinations. I later even heard people tell stories of photographs being taken of them when they were children or young adults. These photos were taken of them without clothes, sometimes without their parents present and rarely with consent. Sometimes as adults they would find these pictures of themselves in medical journals, with black bars across their eyes. The black bars to supposedly hide their identity, but also as a way of saying that who they are doesn’t really matter, they are just a body to be marvelled at as a medical wonder. A slide to be shown in a medical lecture, with all the ‘oohs and ahhs’ as the students realise the female looking children have XY chromosomes.
Until recently, I only ever saw these pictures in medical journals or older medical textbooks and I was relieved to see that they were not present in my copy of ‘The Illustrated Textbook of Paediatrics’ that I read from cover to cover whilst at medical school. Until recently, I had hoped these pictures had become a thing of the past and that we were now less likely to treat people in this dehumanising way, reducing them to just a curiosity in a textbook. However, I am now increasingly seeing these pictures used on Twitter as a way to validate beliefs in gender identities and that a woman is anyone who identifies as a woman. These pictures of intersex women like me are supposed to prove that being a woman is a feeling – and that if I can be accepted as a woman, anyone should be accepted as a woman. The dehumanised bodies of people like me have become the ultimate ‘gotcha’ in debates about gender identities.
However much I feel I have made peace and accepted the things that have happened to me – and however much I now feel that I have a happy and fulfilling life, filled with friends and family, there is something gut wrenching about seeing these pictures used in this way. A visual sign of the trauma, isolation and stigma that so many of us born with different bodies have experienced. As many celebrities and academics cheer along and claim to be on ‘the right side of history’ in the gender wars, little thought is given to the treatment of intersex people who have been caught in the middle. This needs to change if we are ever to really help children with different sex development get the help they need, to grow up without secrecy and shame.