What exactly is a DSD, and what is it like to live with this?
Jennifer Milligan tells her personal story from a feminist perspective.
Before I begin, I want to stress this is written from my own personal perspective as a woman with one particular difference of sexual development or DSD (Turner Syndrome) and based on my own experiences.
Each DSD is different and how each person with that DSD experiences it and views it is different. I do not speak for all women with Turner Syndrome, let alone all people with a DSD. But because of the way that DSDs are being discussed in the debates around sex and gender and ‘what is a woman’, I feel the need to write this.
In recent years the issue of the treatment and identities of those with DSDs (also called VSDs - Variations of Sexual Development and CCSDs -Congenital Condition of Sexual Development) have increasingly been drawn into the debates around sex and gender and gender identity. The language used around the 40 or so conditions that fall under the category ‘DSD’ is much debated and contentious among those who have one of these conditions. I am going to refer to them as DSDs (Differences of Sexual Development) for the rest of this post as this is the term most commonly used.
The NHS gives the definition of DSD as “a group of rare conditions involving genes, hormones and reproductive organs, including genitals. It means a person's sex development is different from most other people's.” [Notes 1]
People with DSDs represent some 0.02 % of the population, (for example Turner syndrome affects around one in 2,000 women). What is important to note is that every DSD affects either females, (such as Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome) or males (such as Klinefelter Syndrome). Each DSD has its own health impacts. There is a long and difficult history of how the medical profession has treated people with DSDs (especially particular DSDs such as Complete Androgen Insensitivity Syndrome (CAIS)).
Reading Henry Turner’s original 1938 paper where he sets out his case for the DSD that bears his name, what is striking is the obvious emotional pain of the seven women he describes. The physical examinations he describes being performed on them are horrific. Understanding the history of how the male-dominated medical profession has treated women helped me to contextualise this.
Here is my story. I was diagnosed at the age of 11 and have been on some form of hormone treatment since my early teens. I started connecting with other women with Turner Syndrome in my mid 20s (almost 25 years ago now). Many of my closest friends are other women with Turner Syndrome. I wrote a blog in 2010 about the importance of these friendships and the mutual support we give each other [Note 2]
Some of the ways Turner Syndrome has impacted on my health is that I have coeliac disease, hypothyroidism, hearing loss and slightly lower bone density. While these health issues are important, it is the psychological and social issues that have come with Turner Syndrome that have the greatest impact.
When I was diagnosed, my family had just returned from living in Ireland for a few years. There was already quite a lot of upheaval going on in my life such as moving to secondary school. I was sent out of the room while the full implications of Turner Syndrome were explained to my mother. She explained I would have restricted growth but I knew there was something else significant that I would have to deal with. When I found out about menstruation a few months later at school, I got a feeling that they were connected to what I had not been told about Turner Syndrome and that I would not have periods naturally. That evening I told my mother I had learnt about menstruation and puberty at school and she broke down and told me the full implications of Turner Syndrome.
I sympathise a lot with my parents as it was obviously a difficult time and the decision about what information to disclose and when is a difficult one for parents. But the fact I was not included in many of the initial discussions about my diagnosis, along with being sent to various forms of therapy (such as speech therapy and physiotherapy to improve my co-ordination), had a serious impact on my self-confidence and self-worth and how I felt about myself as a female. This was not helped by almost getting sexually assaulted returning one early evening from a medical appointment when I was about 12.
I knew from the age of 12 I was infertile. I had to ask questions about how I would fit in and find a role for myself in a society which sees motherhood as a central role for women. We also live in a society which sees women with fertility issues as objects of pity. More than that, we live in a society that does not value an acceptance of infertility. We have the option of various forms of fertility treatment but these are often very physically invasive and may or may not work. I accepted and made my peace, at a very young age, that I would never be a mother. It helped me to understand how society views women who either cannot be or do not want to be mothers. It also helped me examine what women who cannot or do not have children can offer to society, and how women generally can find worth and purpose beyond motherhood.
I was put on HRT to put me through puberty when I was 13. At the time I was highly reluctant to take hormones and tried to tell my parents and doctor that I was unhappy about it. I felt that my puberty was something that was being controlled by male middle-aged doctors and that I had to go along with this, to look conventionally female. I felt that my body was being taken out of my control and wary of being put on a significant medication for several decades. So I completely understand those who say that we should be careful not to reduce being female to secondary sexual characteristics, and that being female goes beyond outward appearance and being conventionally feminine in appearance.
The male doctor who treated me while I was a teenager would examine my breasts and genitalia at every hospital appointment and he would comment on how I was ‘coming along’, sometimes in front of medical students. This was highly inappropriate and made me feel as though my sexual development was nothing more than a medical case.
It has led me to feel somewhat disconnected and protective of my body. After almost 40 years I am grateful I did take oestrogen to go through puberty, for a variety of reasons – not least that it has probably ensured I have better physical health. But I realise some of my concerns about taking HRT in my teens are similar to those of teenage girls who feel disconnected from their bodies during puberty, for many reasons. A huge factor is their realisation that their changing bodies will be sexualised and there is a risk of sexual harassment and violence that comes with this.
As I stated earlier, I started to really connect with other women with Turner Syndrome when I was in my mid 20s. I would say my closest and deepest friendships are with other women with Turner Syndrome. I have received a lot of love, support and understanding from these friends and hopefully returned that. It has taught me a lot about what can happen when women connect with and support each other.
I started getting involved with feminist groups and activism in my late 30s. I have discussed my Turner Syndrome with a few feminist friends. They have never been anything less than supportive and always been interested to have me discuss my condition.
Women with Turner Syndrome, along with all those who have a DSD, have to deal with the fact there is very little knowledge about these conditions and what they actually involve. This is true of some medical professionals and certainly of the general public. Medical books have also been guilty of describing DSDs in inaccurate terms and using inappropriate images to illustrate them (for example using photographs of individuals with DSDs where they are undressed without the consent of those individuals). I regularly see inappropriate jokes or comments about Turner Syndrome on social media. And when we are portrayed in the media it is usually as objects of pity (because of our infertility and health issues). Turner Syndrome has also been portrayed in deeply problematic ways in dramas such as Casualty and CSI Special Victims Unit (this issue happens with other DSDs – such as the episode of House that had a character with CAIS).
This is the context before the recent debates around sex and gender and the arrival of social media.
I first became aware of the way that people with DSDs were being discussed in current debates around gender and sex about 12 years ago, but it was still rare. Several years ago I started to become aware of how younger women with Turner Syndrome were discussing the condition on Tumblr and became concerned about the narratives they were believing. However, this tended to be a discussion between women with Turner Syndrome themselves. About four years ago I started to become aware that DSDs and karyotypes [for explanation of what a karyotype is see note 5) other than xx and xy were being wrongly described as separate sexes on social media, especially Twitter.
I wrote a blogpost on my thoughts on Turner Syndrome and feminism in 2010 when I began to notice this issue (linked to in Note 3). In 2014, I wrote another blogpost in response to discussions about Turner Syndrome on Tumblr (linked to in Note 4).
I have read so many times on social media, especially on Twitter, claims that ‘intersex people’ somehow prove that ‘sex is a spectrum’ or ‘there are more than two sexes’. Indeed, from Twitter searches I observe that Turner Syndrome is cited as ‘proof’ that ‘sex is a spectrum’ almost daily. The bodies of those with DSDs are ‘othered’ and on occasions fetishized. We are told to ignore the fact that we have specific medical needs by some ‘intersex activists’.
The language we use is in itself a highly contentious issue. The term ‘intersex’ is used by some activists and organisations but some with DSDs/VSDs/CCSDs find it a problematic term because they see it as giving the wrong message about DSDs. There is also increasingly an issue with people claiming to be ‘intersex’ when they do not have DSDs, but claim to speak on behalf of us. There is even a club night called ‘InterseXXY’ in East London which is apparently aimed at people who are ‘intersex’. (I can tell you there is nothing ‘sexy’ about the many health issues people with DSDs often face or the issues of self-esteem and body image we deal with).
These social media discussions have real world impact. People with DSDs are being brought into discussions about whether people be allowed have a X marker on their passport (this actually happened in Germany). The Scottish government included ‘people with variations of sexual characteristics’ in their recent hate crime legislation despite some people with DSDs and organisations expressing concern about both the terminology used and how this legislation might actually be counterproductive to those of us with DSDs. Turner Syndrome along with other DSDs were used by the lawyers for the Centre for Global Development at Maya Forstater's original Employment tribunal in 2019 and cited in the judgment. (MRKHvoice’s blogspot on this judgement is very worth reading - see note 6).
The number of people who have a DSD is also regularly misrepresented – the erroneous figure of 1.7% is regularly cited on social media (This figure was first cited by Anne Fausto Sterling in her 2000 book ‘Sexing the body: gender politics and the construction of Sexuality’ )This is despite this figure being debunked in medical literature particularly by Leonard Sax in (see note 7) .
From my dealing with my friends with Turner Syndrome, most are unaware that this whole discussion is happening. It does not represent what we discuss or debate amongst ourselves. But some are becoming more aware and concerned about this.
There are many other women and men with DSDs who are speaking up about the ways people with DSDs/VSDs/CCSDs are being discussed in debates about sex and gender. They have their own perspectives and experiences on this topic.
Over the past few years I have connected online with other people with DSDs. There are many great voices on Twitter. They are concerned that DSDs are being weaponised and misrepresented in the current debate about sex and gender by both sides. Sadly in the last few months individuals with DSDs have faced attacks and DSDs (particularly CAIS) have been misrepresented by some on the ‘gender critical’ side.
Thankfully, there are people such as Dr. Emma Hilton, Colin Wright and Zach Elliott are speaking up for people with DSDs.
All I can say in conclusion is to listen to the voices of those with DSDs and be willing to learn about our lives.
Notes:
1- NHS definition of Differences of Sexual Development
https://www.nhs.uk/conditions/differences-in-sex-development/
2- My 2010 blog about my friendships with other women with Turner Syndrome
http://june42.blogspot.com/2010/12/37-conversations-amongst-ourselves.html
3- My 2010 Blogpost about Turner Syndrome and Feminism http://june42.blogspot.com/2010/09/i-have-recently-started-getting.html
4- My 2014 blogpost on women with Turner Syndrome http://june42.blogspot.com/2014/04/72-on-importance-of-knowing-women-with.html
5. Wikipedia entry for Karotypes https://en.wikipedia.org/wiki/Karyotype
6. MRKHVoices’ blog about Maya Forstater’ s industrial tribunal judgement
https://mrkhvoice.com/index.php/2019/12/18/what-is-dignity/
7. Leonard Sax’s response to Anne Fausto Sterling
https://pubmed.ncbi.nlm.nih.gov/12476264/
Here are a couple of blogs that are worth checking out. They both discuss the experiences of living with a specific DSD and some of the wider issues those of us with DSDs face.
ClareCAIS (A woman living with Complete Androgen Insensitivity Syndrome) has a great blog at https://differently-normal.com
MRKHVoice (a woman with living with Mayer-Rokitansky-Küster-Hauser