(sorry this has turned out rather long)
The more I think about this the more fucked off I am with Sally Phillips.
If I had watched this documentary knowing nothing about Downs I would have come away with the impression that people with this condition are just lovable bundles of empathetic joy who can live independently in good health, who can dance, be fantastic gymnasts, do TED talks, write letters to the papers ... All of these things are true for some and I'm very glad that outcomes have improved so dramatically over recent years and continue to improve.
I wouldn't have learnt about the high risks of heart defects, thyroid problems or early dementia. I wouldn't have learnt about the shoddy and dwindling support services for disabled people and carers, or about the grinding poverty and exhaustion of caring for a child and then an adult with significant additional needs if you don't have money. I'd have learnt nothing about the anxiety of parents for what might happen to their child after they die or are no longer able to care for them, or about the emotional toll of caring which leads so often to divorce and sibling resentment.
Maybe all of these negatives are covered by HCP if you get difficult news after a test (I don't know, I opted out of testing and neither of my DC had additional needs, although one does now as an adult) - maybe SP was just trying to redress the balance, which is fair enough as far as it goes (It doesn't go that far though, considering she's in quite a privileged position, not only in terms of wealth but also education and influence - she has the skills to research and advocate for her child's needs and is famous enough that people will listen to her).
There is a valid and overdue debate about how we (fail to) value and support disabled people in our society but for fucks sake do not link this to a new test which gives women exactly the same information as before, only earlier, safer and more accurately.
SP says she is pro choice. Is she fuck! At the same time she is campaigning against raising concerns about a test which will give women info earlier in their pregnancies, she is retweeting a campaign to lower the time limit for TFMR to bring it in line with termination for other reasons*. She doesn't want women to have test results early enough to make a choice she doesn't like. Everything I've read and heard about her position over the last few days suggests to me she is anti-choice but doesn't have the guts to say it.
I'm fucked off with Sally Phillips because:
- I think she has missed a trick. She could have used her influence to do something really good for disabled people and carers but this is not it.
- divisiveness. This has pitted women against each other to the benefit of nobody.
*I agree with this campaign that the current law is discriminatory but I'd prefer the time limits were brought into line by raising the general time limit to term. I don't believe this would increase the number of late abortions. Very few are performed after 24 weeks and the circumstances surrounding them are generally harrowing, as are the circs around women who are denied abortion after 24 weeks. For women who need abortion - as early as possible, as late as necessary.