40: The media and TS

Recently there was coverage in the UK press about Penny Jarvis Stephens freezing her eggs for her daughter Mackenzie Stephens, a two year old girl with TS. While I have my own thoughts about this issue, it has also made me reflect again on the whole topic of the way Turners Syndrome is discussed in the media

In December 2009, there was an episode of ‘Casualty’ which included a character with TS. However this character was portrayed as emotionally unhinged by her infertility to the point where she snatches a child and later causes a fatal car accident in which a baby dies. This caused a considerable amount of distress and offence to the women with TS who saw it. When I complained to the BBC, the response was highly patronising and condescending. The medical researcher had not even got the fact rights as the actress portraying the woman with TS was of normal height! What was so offensive about the storyline was that it portrayed infertility as a form of mental illness.

I also heard of possibly the most surreal reference to TS. This was on the Jeremy Kyle show! A man and woman were in dispute about the paternity of a small girl (so far, so Jeremy Kyle) but this girl had TS and the mother accused the father of not being supportive when the girl needed so much medical attention. Lucy managed to see some of it and she told me how the woman being overly dramatic about the condition saying her daughter needed surgery on most major organs! TS is a complex condition but surely not to this extent!

Finally we return to the story of Penny and Mackenzie Stephens. Again the focus of the story is on infertility, even though Mackenzie also has other health issues such as restricted hearing. The story is also told from a parents’ perspective

You will notice above that when TS is discussed that 1: it is usually in the context of infertility, how terrible it is and how it needs to be overcome 2: Parents, usually mothers get to speak for their TS children rather than having a woman with TS talk about the condition itself. This is unfortunately true in most coverage of TS, when it occurs.

Lucy and myself have remonstrated with a parent involved with a support group about the sort of stories she was involved with putting out in the media. These focused both on her daughters’ infertility and ‘behaviour issues’ (she was made to critise her own harmless behaviour on a tv documenatry). This cannot be helpful over the long tem.

There was another occasion when I was approached to talk to a populist magazine. In the end, the magazine decided to interview another woman with TS who had adopted a family of three children with her husband. I was grateful at least on this occasion a woman with TS got to tell the story, even if the focus was yet again on fertility.

The one time that TS made the front page was 14 years ago when David Skuse presented his research on TS and social skills. This resulted in a number of very unhelpful articles such as this one from Time which argued that women with TS are socially impaired, and worse still that this is somehow because they are more like men than other women. It may be a good headline for a news reporter but it is women with TS who have to live with the consequences of these types of stories. It makes it that much harder to be open about TS publicly
http://www.time.com/time/magazine/article/0,9171,986575,00.htmlat


Andy Warhol's assertion that there is no such thing as bad publicity is not necessary true!
Recently a TS friend appeared on See Hear as she has very restricted hearing. It was good that another health issue connected with TS got some coverage, particualrly as hearing issues are something which have a considerable impact on many women with TS.

There are many medical issues which do not get the media coverage they deserve or that get misrepresented. There are also the additional issues of the way that the media portrays women. There is no easy solution to this issue- only to try and make sure we raise our voices and make ourselves heard