Susan's Blog

Monday, January 16, 2012

Huffington Post/Amelia Rivera

Here is my piece in today’s Huffington Post on Amelia Rivera and the medical establishment’s close-mindedness.

posted at 3:54 pm 2 comments

2 comments

I am not as eloquent as you are (your article is very well written by the way, and I’m not being sarcastic) but I understand the surgeon’s point of view better than you do because I AM a surgeon. And isn’t that what it’s all about- trying to see the world through each other’s eyes? I think you should contact the transplant surgeon, or a different transplant surgeon, or a bunch of transplant surgeons, and write a nice piece giving the other point of view. You could do a really good job.

— added by src24960 on Wednesday, January 18, 2012 at 4:03 am

I loved your piece because it really got at the underlying cultural devaluing of people with disabilities. Especially the way you described the impact on Nat and others never being ‘enough’ as they are — constantly having to change themselves to fit society’s norms.

I’m thrilled to see this comment by the surgeon. To me, there are 2 questions — one is about the the eligibility of people with intellectual disability and transplants.

The other is about how doctors communicate information to families. I don’t know what happened in that conference room because I wasn’t there. If there are valid medical reasons why the child would not survive a transplant, that is not what the parents took away from their conversation. They took away that they had been told that their child didn’t qualify because she was mentally retarded.

So regardless of what the actual criteria are (and hopefully there will be lots of discussion and reflection), there has to be some learning here in terms of how we communicate information and how we ensure understanding (if in fact what occurred was a miscommunication).

Susan, you may be interested in this update:

http://bloom-parentingkidswithdisabilities.blogspot.com/2012/01/communications-primer-in-amelia-rivera.html

— added by Louise Kinross on Wednesday, January 18, 2012 at 4:42 pm