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.
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