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Learning policy, wrote guides to ASL law, facilitated input from children/yp/parents into the ASL Act and wrote a book (out of date now).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.
We have such good policy in Scotland, but we still have a way to go to work out how to translate that into people's lives & how they experience the 'systems' they rely on. I hope #UNCRC incorporation helps.
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."