I wanted to share an article I found today that has a bit of a tie-in to my post yesterday. I talk a lot about having a disability as an adult, but this article from Refinery 29 shows what it’s like for kids with a disability, and what their lives – and their families lives – are like.
The article discusses a new photography book by the photographer Karen Haberberg, who took pictures of children with disabilities or other chronic, complex illnesses. I really recommend you click through and read about her inspiration, and check out the selection of photographs and stories that they shared.
There were a few things that really struck me about this book – the first was the title, An Ordinary Day. I think it really puts things into perspective – it shows people how much extra is involved in an ordinary day for a family affected by a disability, but it also tells readers that for those families, this is just their normal.
The other thing is this quote – the interviewer is in bold, and the photographers response follows:
There’s so much stigma attached to sick children — it’s hard to know how to talk to them or about them, especially with the people who love them the most. Do you have any advice for being there for parents with a sick child?
“What upsets these families the most was feeling stared at or judged. So many of them told me that they’d rather just be asked an honest question about their child than be singled out.”
That quote really jumped out at me, because it references the staring that I talked about in yesterday’s post. I’d love for this book to help open the dialogue – talking and asking questions is so much better than staring! I know I’ve mentioned staring a few times now, in different posts…. but it’s because of how often it happens.