In case you missed it, a movie called Black Panther came out last week and it is uh… kind of a big deal.
Don’t talk about us without us.
It’s a phrase I first heard from Maysoon Zayid, a Palestinian comedian who lives with cerebral palsy (whose story I told in my book) and is an advocate for representation – of Muslims, the disabled, and anyone else otherwise underrepresented – in media.
I’m fairly certain I shouted “YES!” at the screen when I read it. When it comes to living with chronic illness, I don’t want to hear or see the opinions of those who don’t live with this burden in places that are supposed to be held for us who do. It’s not that I don’t value them as people or value their opinion. But they have their own space – a lot of it – and they cannot fully understand what living in my space means. Well-intentioned opinions formed from lack of experience are useless at best and can be immensely damaging. Continue reading “Don’t talk about us without us.”