I first posted about my being diagnosed with Turner Syndrome on this blog almost 16 years ago. In that time the discussion around Turner Syndrome and other Differences of Sexual Development (DSDs) has changed dramatically and not for the better.
My diagnosis came shortly after my family moved back to London after several years in Ireland. It was therefore a period of challenging readjustment to go from living in a quiet village in Co. Dublin to living in inner London. My last few months of primary school education and first year at Secondary School were difficult for a number of reasons. I was also sent for various forms of therapy such as speech therapy and physiotherapy to deal with my ‘clumsiness’. There was a traumatic incident on the way home from one of the physiotherapy sessions. The effect of these couple of years, which came at a critical time, combined with my diagnosis has had a long-term impact on my confidence and self-worth that I still struggle with.During this period I was diagnosed with Turner Syndrome and began treatment. As part of this I was started on Oestrogen and later progesterone. As part of this I was regularly subjected to inappropriate examinations by a middle aged male consultation who would inspect my ‘development’ (ie to see what Tanner stage I was at), including once in front of a group of medical students. As discussed in other posts here, I consider this a form of abuse.
I was deeply unhappy to be started on Oestrogen treatment. I regularly said I was unhappy about it to both my parents and the consultant. I felt like control of my body was taken away from me and I was being put through puberty against my will to satisfy the male medical establishment. My parents were doing the best in the circumstances, and they could only accept the advice of my consultant. But I cannot help but feel that the way I was being treated by the consultant and the impact of the other events contributed to my discomfort. I admit that if it had been left up to me at the time I would not have proceeded with the treatment.But I would have been wrong.
I now accept and appreciate that my treatment was the best course of action given the various medical impacts of Turner Syndrome. I can see from regular medical monitoring that starting oestrogen in my early teens has helped with my cardiac and bone health. I could not as a young teen understand the long -term impact of Turner Syndrome or the many health impacts it can have. This is not a failing on the part of my younger self. But it is important to understand I was not in a position to make a fully informed decision about my treatment at that point of my life.I have had discussions with some of my friends with Turner Syndrome about our treatment as teenagers. It is a complex issue and we all have different experiences and outlooks. It cannot be denied that it does impact how we view ourselves as adult human females with a DSD. Whatever our treatment (or no treatment in the case of older women with Turner Syndrome) we all remain female.
However, I now understand that I am not the only woman who struggled with going through puberty and who wished she could have avoided this. I am far from the only woman who felt she lost control of her body. There have been many discussions by feminists (often relating their own experiences) of how eating disorders and self-harm in young women can be a consequence of the changes of puberty. This is often a result of either sexual trauma or being sexualised or becoming aware of the sexualisation of women and girls. It does not help we still do not take the abuse and sexualisation of young women seriously.I do have mixed feelings about issues of informed consent and teenage girls with Turner Syndrome. They deserve to be heard and for their concerns /wishes to be addressed in their treatment. They deserve to be given as much information as possible about Turner Syndrome and the various medical impacts and treatments. They should be centred and they should not be subjected to inappropriate examinations and discussions (such as some as I have seen online). They deserve to have any concerns they have addressed and worked through. But they also deserve appropriate treatment and as good long-term health as possible. They also should not have to bear the burden of decisions that will have life-long consequences without full information or ability to understand these decisions. It is not fair on them.
Therefore I am deeply concerned about recent developments in Australia. In particular this dangerous. This is not coming from people with Turner Syndrome or Turner Syndrome support groups. It is coming from an ‘Intersex’ activist group ‘Inter Action’.Submission on proposed ACT General Treatment Plan for 45,X0 Turner syndrome
Morgan Carpenter does not have Turner Syndrome. He is using Turner Syndrome to push a particular narrative about DSDs which is highly contested. He does not have expert medical knowledge of Turner Syndrome. He is speaking over women and girls with Turner Syndrome, medics who provide our treatments and support groups for those impacted by Turner Syndrome.
‘Informed consent’ looks like an admirable concept and it is important girls with Turner Syndrome are involved with their treatment and have their wishes heard by medics. But this puts way too much responsibility on their shoulders in a way which does not actually empower them. They are not in a situation where they can fully understand what withdrawing their consent will entail As I continue to learn Turner Syndrome is a complex condition that can have many impacts.It is disturbing that teenage girls with Turner Syndrome may either get their treatment delayed or not receive treatment at all if this proposal is accepted.
This is not coming from what could be called the Turner Syndrome community but activists who do not actually represent us or fully accept our needs and experiences.It is important to note many people with DSDs do not feel represented or comfortable with being called ‘Intersex’. We do not feel represented by groups such as InterActiion and activists like Morgan Carpenter. We have concerns about what the actual agenda is with trying to lump a set of complex conditions which all have different impacts together. We also have concerns about the denying that DSDs are sex specific.
Reading the case reports on the women Henry Turner related in his 1938 paper illustrates the deep psychological as well as physical issues that women with Turner Syndrome had to deal with when they remained at Tanner Stage 1 & 2. Oestrogen treatment at least gives women with Turner Syndrome a chance to develop enough that they are able to have and enjoy intimate physical relationships without discomfort and have a healthy sexuality as adults.
We need to address the issues young women face today, particularly with online culture.We need to address issues with the medical profession and how it treats people with DSDs and intersex conditions and women ang girls. We need to look at issues of power and consent. We need to continue working on these issues and to listen to people with DSDs.
We need to let people with DSDs know that they deserve respect and proper care and to be comfortable in their dealing with their medical treatment.We do not need to be used as pawns in wider ideological debates.
