I'm disappointed at the High Court decision (bbc.co.uk/news/uk-englan…), but hopeful the case is a stepping stone towards realisation of #HumanRights for people with DS.
I hope it will help change the way parents are spoken to, and supported to make their decisions in pregnancy.
Around 90% of parents in the UK choose not to have their baby if they discover that he/she has Downs syndrome.
We don't need a legal change to stop parents being offered information/advice that is rooted in, or framed by, ignorance & prejudice.
A brilliant thing happened this week when George Webster - who happens to have Downs syndrome - joined @CBeebiesHQ as a presenter. The response from viewers was amazing.
The law isn't the only way to dismantle discrimination. If people with DS (and other disabled people) are included, equal and visible, that will go a long way to countering the ignorance that sows the seeds of discrimination and prejudice.
I was lucky to have spent time with people with DS when I was younger, & that made a world of difference to my experience of becoming Rosa's mum.
No parent should be robbed of the joy of welcoming their beautiful, loved son or daughter into the world. And the world they're welcomed into should be one that shares and celebrates that joy.
Today has reinforced with me why people affected by systems are the experts & should be at the heart of designing them (but of course, they're usually not).
I worked in Additional Support for Learning policy, wrote guides to ASL law, facilitated input from children/yp/parents into the ASL Act and wrote a book (out of date now).
Still none of that is anything like the experience of being a parent trying to get support in place for your own child. That's a very different perspective & one that too often feels like you have limited power within a big, clunky one-size-fits-all system.
A little thread about language and #HumanRights...
Recently I shared an NHS letter (not mine) that started with the line 'The vast majority of babies are normal.' It meant 'normal' as opposed to babies born with particular conditions, including #DownsSyndrome
Regularly hearing negative language about your child is emotionally wearing. And surprisingly hard to challenge in the moment (for me anyway... which is possibly why I choose to try and challenge it by writing about it).
A fortnight before Rosa was born, a consultant explained the problem they'd spotted with her digestive system, and then went on to say "...and now I have to say something to you that's not very nice... this condition is often associated with Down's syndrome."