A Woman with Turners Syndrome Discusses Feminism and Gender

By June42. You can read more of her on her blog.

I have recently started getting involved with a radical feminist group, something I have been intending to do for a couple of years.

Part of why I have wanted to get involved is that I have found feminist thought on a number of issues (gender roles, women and the medical profession and reproduction) very useful in helping me explore and come to terms with certain aspects of Turner’s syndrome or TS.

turner_karyotype

There are serious issues around the way doctors deal with women with TS. The medical profession is still, like many professions, dominated by men. While I have experience of several female GPs, I have had very limited experience (if any) of being treated by female consultants. My treatment by male consultants has impacted how I view myself as a woman, and how consultants project a view of what is feminine onto girls and women with TS.  Feminists have been the one group who have examined the way the medical profession has treated women and how it is an inherently patriarchal profession (as most are!)I know of one group of TS friends who have enjoyed an excellent relationship with a female gynaecologist over several years.  However this is the exception rather than the rule. One of my friends insists on being seen by female consultants when she has appointments.

I was diagnosed at 11 and  at 12 I started hormone treatment. This was to ensure that I went through puberty like other girls my age. This firstly involved taking oestrogen but later involved taking progesterone to induce periods.

I had very mixed feelings about this. I felt highly uncomfortable about having to take  tablets for my body to do something that happened to all my peers naturally. It felt like I was getting my femininity through a tablet. I wondered why I had to be put through the physical horrors of puberty if I was never going to be fertile. It took me some years to fully understand that there was more to it than that.

This was exacerbated by the way that I was treated at the TS clinic. The clinician would examine my breasts and pubic development every time I had an appointment in front of a group of medical students, often making comments such as ‘coming along nicely!’ I did not like a young woman but like a hothouse orchid the clinician was growing. The Clinician did not mean any malicious by their treatment. They were probably unaware just how inappropriate it was.

This had the effect of causing a serious disconnect between how I feel about myself both as a woman and as a sexual being. It has made me feel as though my femininity is something clinical and my sexual organs are a case study, not an integral part of my body and who I am as a person.

It has made me feel as though these parts of me are something which I can take no joy in and give no joy with. It has also made me feel as though any sexual partner would find me lacking as a woman or be repulsed by me.

I am also incredibly protective of my body and rather nervous about showing any part of it.

I am still a virgin at 40 and while there are a number of things which have lead to this my treatment as a teenager at my TS clinic has not helped. It was only last year that a counsellor began to get me to explore myself as a woman and reclaim these parts of my body for myself. It is going to be a long journey!

I am not the only woman with TS who has been treated this way. I have heard various horror stories along these lines. Many women have serious issues with taking HRT (weight gain, liver damage). Some do not even bother. It is clear from the discussions I have had with them that the way they were treated either at time of diagnosis (for those who were later diagnoses) or the way they were treated while going through puberty is at the root of this. Not taking HRT is a way of reasserting some control over their bodies, trying to reclaim some kind of belief in their womanhood.

My current clinician is a very sweet person who is interested in trying to help women with TS overcome the issues they have with sexuality. Maybe looking at the treatment we received when younger.

One of the issues ‘second wave’ feminists looked at was the way women are treated in the medical profession. They were concerned to ensure that women got information about how their bodies work and how to take charge of their health. This was exemplified by the Boston women’s health book collective’s collating and publishing ‘Our bodies, ourselves’ in 1973. This had an important role in helping women reclaim some balance in their relationships with the medical profession and gave them the confidence to question doctors. It also helped women to discern that they could find information for themselves and disseminate it to others with the same health issues. Most importantly it helped women perceive that they had ownership of their bodies and could have ownership of any health issues they may have. I find that I gain as much, if not more, medical information from my friends with TS as I do from health professionals. We also share our experiences of our treatment by particular health professionals. This is directly builds on the practices developed by the Boston Women’s health book collective back in the 1970’s.

I have been involved in a couple of ‘speak outs’ at a couple of TS conferences about my life with TS. The ‘Speak out’ was a technique of awareness raising developed by second wave feminists, which has been used around issues such as abortion.

My friends from the local TS group may not be aware of it but every time we meet up we practice the key second wave feminist practice of ‘Consciousness raising’ This is the practice of women coming together to share their experiences of particular issues such as relationships, work , etc. By coming together in ‘consciousness raising’ groups in the late 1960’s/early 1970’s and sharing their experiences, the women involved with these groups were able to discern common patterns of how they were treated as women, and that experiences that they thought were unique to themselves were actually shared by large numbers of women. They were able to build on what had been shared in these groups to for feminist theory on issues such as rape (Susan Brownmiller’s ‘Against Our will’) and housework and gender roles in the home (Ann Oakley’s ‘Housewife’).  Through our conversations my friends and myself have been able to see that we share specific experiences we thought were unique, particularly in the work place (many of us have been bullied), relationships with men (specifically how potential partners deal with our infertility) and with our families. This has allowed us to become stronger as individuals as we realise that we are not alone and to support each other as we can share coping strategies.

Feminism has also challenged the idea that a woman is only truly fulfilled though motherhood.  By fighting for women’s reproductive rights, feminists have helped women claim sex as something that is important in and of itself, and not just part of the reproductive process.

By fighting for women’s educational and employment rights second wave feminists have enabled many women to find validation which does not involve becoming a mother. This has allowed women with TS opportunities to contribute to society that they would not have had even 50 years ago.

Feminists have been at the forefront of looking at issues of gender. I attended a highly useful event in April 2010 looking at different feminist theories of gender.  I came away from this event feeling enormously heartened. The last few years have seen the rise of ‘Queer’ theory of gender which argues for a multiplicity of genders. To this end, Turners Syndrome (along with some other chromosome conditions) has been incorrectly described as an ‘intersex condition’ by some ‘Queer’ gender theorists. Not only does this display a complete misunderstanding of TS as a condition, it is also profoundly damaging to women with TS, whose sense of themselves as women has already been undermined.   Radical feminist thought argues that gender roles are something that should be transcended and that social conditioning plays as large a part as biology in how we become ‘male’ or female’.

Certainly there are some tensions. There are feminist groups which oppose the selling of eggs as they have concerns about the way women who sell their eggs would be treated (which is clearly something which many women with TS would support as there is a significant shortage in egg donors in this country). There are also feminists who have very, very legitimate concerns around reproductive technology and  IVF  and who distrust the use of HRT as it medicates the menopause, a natural experience that women go through.

I am grateful every day for the feminist movement.

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3 Responses to A Woman with Turners Syndrome Discusses Feminism and Gender

  1. TS Father says:

    I’m so sorry your experience with your physicians as a child were so scaring. You’re brave to speak-up and speak-out. Until locating this post I simply hadn’t looked at it from this perspective. I am a father of two girls, with out eldest daughter (11) being diagnosed with TS exactly a year ago. She has been fortunate enough to have exceptional female practitioners who have a lot of experience with TS. I think it has made all the difference in the world with our daughters ability to communicate her thoughts and feelings about having TS. Hopefully as parents we will enable her to have the same level of comfort discussing her anatomy as well as her sexuality.

  2. Pingback: Turner syndrome and feminism | Butterflies' Corner

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