I recently
saw a musician in concert who I last saw live in 1998. This brought up some interesting
reflections. Back then, I was going a masters in Librarianship at UCL. I was
attempting to find my way in the world after University (I have written about
this in a previous post). At the time I felt like I was not making a good job
of this at all. I really cannot say that enjoyed these years much. But seeing
this musician again has allowed me to make a sort of peace with this period of
my life. There were a lot of happy times and positive experiences as well as
bad times. I am glad for the role this musician has played in helping to form
the person I am today. I am proud to be a fan (time to fess up- this musician
is Richard Davies)
But there is
another aspect to this nostalgia
When I saw
Richard Davies in 1998, I was just beginning to connect with other women with
Turner Syndrome. I connect particular albums by Richard Davies, (especially
Telegraph) with the first three years of being part of the Turner Syndrome
community. It helps me to recall get-togethers
at friend’s houses and day trips we took. It is to say the least ironic that I
finally get to see Richard Davies in
concert again when I asking some pretty deep questions about what role I wish
to play within the larger community of women with Turner Syndrome and what role
other women with Turner Syndrome play in my life.
I have to
say as an aside that from 1996 to around 2005 I was deeply into ‘Indie’ music
and discovered acts such as Super Furry Animals, the Flaming Lips, several of
the ‘Elephant 6’ acts and Pernice Brothers. But it is probably only Richard
Davies’ music that I really continue to listen to regularly (Great Lakes is
another exception)- this was even before I knew about this summer’s concerts.
I have to
say that rediscovering George Harrison’s music in the last three years has
allowed me to make peace with my teenage years, and the effect of dealing with
Turners Syndrome in these years. George and his music came at the right time
and helped me to see that I was capable of determining what was important to
me and that I had opinions that were worthwhile. His music made me feel good
about myself when few other things did. My school mates found this a cause of
considerable amusement (even my best friend from this period). I was made to
feel a little bit of a freak, just as I was a bit of a ‘Freak’ for having
Turner Syndrome. Well- I am only in contact with one friend from school and she
gets that I am a George Harrison fan mainly because she is a Beatles/John
Lennon fan herself. It has been a
delight to connect with other George Harrison fans and find out what his music
means to them. It has also been beyond a delight to discover what a great human
being George was. It is also wonderful to discover other George fans who are
such thoughtful, kind and intelligent people. Well, if I was right to be a
George Harrison fan, perhaps I am not a complete fool.
George also
played a role in helping find my way into the Turner Syndrome Community. Back
in 1997, shortly after we met, Lucy and I discovered a mutual love of the
Beatles and we attended the annual Beatles convention in Liverpool together.
Some of the best memories I have of my friendship with Lucy are from the trip. The
fact she loves the Beatles is one reason I am so fond of Lucy. I have a very
dear group of friends with Turner Syndrome in Liverpool who I try and see a
couple of times a year. They are proud of their native sons and glad I am a fan
of George.
Sunday 27 July 2014
Sunday 20 July 2014
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.
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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