77. I am not a 'TS Butterfly'

I recently spent a couple of months as a member of a Turner Syndrome discussion group on facebook. I decided to leave yesterday after a couple of weeks heart searching. I know one of the women who moderate the group and several of my friends are members.

There were some good points. I was delighted to see a post by a lesbian couple, both of whom had Turner Syndrome. I was glad that women with Turner Syndrome were generally being supportive of each other. It also gives us a space to exchange experiences and advice. I also very much approve of the fact that it is run by women with TS and provides a safe space for women with TS. I want to support these kind of initiative. If the board had just comprised of women with TS I would have stuck with it. However the board also includes mothers, of girls with TS. I began to have issues with some of their posts.

On this board women and girls with TS are often referred to as ‘ TS butterflies’. You cannot imagine how problematic I find this. I fully acknowledge that some women with TS are comfortable with this term. But I also know others who also find it problematic. If it was just a term used between women with TS, I would still have an issue with it but not to the same extent. It is supposed to imply the beauty of girls and women with TS and that ‘caterpillar’ girls will be transformed into ‘Butterfly’ women. I personally see this as highly patronizing to us. I also find it quite dangerous as there in an implication that girls with Turner Syndrome need the process of hormone treatment during adolescence to fully realize their femaleness. I also get nervous about using the name of something non-human to describe any group of girls and women (i.e. Birds, chicks, etc.) Feminists have shown how such language de-humanizes women.

However I find it very problematic when parents use ‘TS Butterfly’. It is telling however it is mothers who describe their daughters as ‘butterflies in the same way others describe their daughters as ‘princesses’. It also strikes me as similar to some of the patronizing/pejorative terms that people with disabilities have to deal with such as being ‘Special/differently abled. These terms do not actually challenge social attitudes or treatment of individuals. In some ways they re-enforce them. It also has similarities to the Victorian era convention of ‘Invaliding’ women in order to control them. I am sure that these mothers mean well and do not realize what they are doing. They possibly think calling their daughters ‘Butterflies’ is cute or affirming, without thinking through the implications of such language. It is telling mothers use this term far more regularly that women with TS on this board.

I have written in previous posts about the fact that there are tensions between the needs of women and girls with Turner Syndrome and their parents. Parents can be highly protective of their daughters and tell to see the medical issues of Turner Syndrome, where women and girls with Turner Syndrome feel that the social and psychological issues also need to be addressed. Sometimes there can be actual conflict. I have seen it when some women with TS try to discuss issues around over –protection with parents. I may come back to the issue of the complex issue of the relationships between women and girls with TS and their mothers.

And just as an aside. Not one woman on this board called herself intersex or gender fluid.