I've been reading around a bit and thinking quite a lot. This might be quite long.
There is proper evidence that women and families are poorly supported around screening, diagnosis and subsequent decisions, whether they continue with the pregnancy or terminate. I found this Parliamentary Inquiry into Abortion on the Grounds of Disability which outlined the issue (among others) in 2013 and made a number of recommendations. It's shit if nothing has changed since then but not surprising, given the current economic climate. We need to do something about this.
A big chunk of the parliamentary enquiry is about whether the current time limit exclusion for TFMR constitutes disability discrimination and what changes should be made to the law. There is a bill going through parliament at the moment which would remove the exceptions for late TFMR. SP has tweeted a campaignin support of this bill. The Don't Screen Us Out campaign, which SP also supports, doesn't mention the bill but is 'lead by Saving Downs Syndrome' - an international organisation that is most definitely not pro-choice. This article on their website is an eye opener.
I don't think someone can be described as pro-choice if they are simultaneously campaigning for a lowering in the time limit for TFMR and against a test that provides earlier, safer, more accurate results, not only for Downs but for other conditions that really don't bring joy to anyone.
I'm concerned there is so much emphasis on NIPT while this bill is going through parliament with barely any attention.
Most of the rest of the world is not as pro-choice as the UK. It's worth keeping an eye on international pressures and less-than-transparent agendas.
There's a lot of talk about the voices of people with DS being missing from this discussion. There's another group whose voices are even more seldom heard - women who have had TFMR, especially those who have terminated late. There have been a couple of posts on the recent threads, and the woman in SP's doc (who I do think was treated appallingly) and that's all I've come across. If 90% of women opt for termination, where are their voices? Why are we only hearing from the 10%?
If we want to reduce the number of TFMR, for Downs or any other condition, we need to listen to the women who have opted for termination, not just the ones who have opted to continue. We need to listen to their actual reasons and we need to not dismiss them out of hand as disablist or poorly informed. We need to make it OK for them to tell their stories too.
I've been thinking hard about what my concerns would be if I was in this situation. The major thing for me would be that services and support are really not great a lot of the time and are rapidly getting worse. Before making the positive decision to have a child with a disability, I would want to ensure I had sufficient means to plug the ever-widening gaps. If we want more women to feel OK about continuing a PG with a diagnosis we absolutely have to address this.
The example of Iceland is interesting but I'm not sure how relevant it is. They have a tiny, very homogeneous population and have a stated aim of eradicating Downs - very different from the UK. Someone crunched the numbers and 100% terminating for a Downs diagnosis in Iceland works out at around 4 women per year. 4 women whose individual circumstances we know nothing about. If we want to use Iceland as an example, it could equally be used to show that a dwindling population of people with Downs does not necessarily mean poorer provision.
The word 'biased' has been used a lot about the documentary. I think maybe a better word is 'manipulative'. I think SP is well-meaning but her doc was ill thought out and divisive. I'm still pissed off about that but have calmed down a lot. There are a lot of difficult discussions that need to be had and a lot of hurt feelings on all sorts of 'sides'. I'm not sure it's possible to have sensitive, respectful discussions while tiny children are encouraged to wave emotive placards at us. IME that never helps in any debate.
I'd like to see lots more positive programmes about people with disabilities and their lives. I'd like to see documentaries about best practice in interventions and provisions for disabled people & their families and the difference they make to people's wellbeing. And about where we are falling short in this country and what we should be fighting for, for people who are here now. I think that could make a massive difference.