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

39: My 2010

As 2010 draws to an end, there are a number of things I have been reflecting on.

During 2009 I went to a counsellor to discuss how I felt about various issues including my relationships with my family, friends and work colleagues and the ongoing emotional fall out around my relationship with Gabriel. I found the counselling useful up to a point and have tried to use it to move forward. I have begun to look at some of my insecurities and how I can overcome these.

Just as well as this year has certainly brought its challenges- as my friends know! There has been a difficult situation at work and at home (dealing with a neighbours’ behaviour) as well as my personal relationships with family and friends.

I know that I can be oversensitive to criticism. I know that I can often misread others’ intentions. I must continue to learn not to allow the negative attitude I have towards myself affect my relationships with others. I have learnt to step back and enjoy seeing my friends and family as and when is possible and not take it personally if people are busy or take time getting back to me. I have learnt to trust people more. I know I have a long way to go. I still need to look at my insecurities and whether I deal with particular situations well. But I feel like I am beginning to move towards the sorts of relationships I want with others and be more relaxed about how people I care about view me.

Then there is the other aspect of my relationships of others. I have allowed others to push me about and put up with bullying/belittling behaviour. However this year I have started to take action in situations where others have behaved aggressively towards me and stepped away from relationships where there has been aggressive or belittling behaviour. This has not always been easy. But I am glad that I am developing enough self respect to know that I do not have to accept this behaviour. I have learnt that I can get help.

All in all, in the past year I have learnt to develop self-respect and assertiveness. I owe this not just to myself but to others who care about me too