Saturday, January 14, 2012

"Mental Retardation," Quality-of-Life, and Kidneys--Oh MY!!!

This is a picture of Andrew taken through the snow this morning. (You can read more about him here.)

This is what my friend Kim, Andrew's mom posted on facebook this morning:

"Things I didn't know when Andrew was born... 1. that he has Down syndrome 2. that before he turned 18 he would be interviewed by TV & newspapers, make history as an actor, and be on a billboard!"
This, on the other hand, is the story of a little girl named Amelia who has been denied a donor kidney by Children's Hospital of Philadelphia because of the assumption that there are more worthy and less worthy people--and that worthiness is determined by IQ...

Quite the juxtaposition, don't you think?

The physician said he was warned that Amelia's parents were very involved with their child--like that's a bad thing... As if HE is the one who truly knows the child's value and that THEY are the ones that don't get it... The doctor also stated that denying the kidney was difficult for HIM (well, it's killing their daughter!)

Ableism is more than unkind and ugly... Ableism can kill.

Here is a post (from quite a while ago) that explains some of the ways life with intellectual disabilities has changed since this physician was in med school.

Please, read, sign the petitions, write a letter. Help save this little girl's life.

The following is a little blog carnival about Amelia:

Terri Mauro at About.com
Stephen Drake, Not Dead Yet
Pipecleaner Dreams
Kidneys and eyes
Autistic Hoya
Susan Senator
Age of Autism
Jews and Special Needs
I Can Has Autism
Love that Max
Care2 make a difference
Transplant Headquarters
ReunifyGally
Disability Studies, Temple U
Countering (Big list of supporting blogs in this post!)
USA Today
More from Susan Senator on Huffington Post
Ryn's Tales
Bad Cripple
I Don't Know What to Say
Vitals on msnbc.com
AAMD

More to come later....

12 comments:

Lydia said...

I am Autistic and outraged. What this means is that apparently, people like me (those with developmental or intellectual disabilities) are not considered worthy of life.

(I also wrote about this at my blog as well, at this page.)

Terri said...

Thank you, Lydia. I agree!!

Sunday said...

THANK YOU!

Amelia's petition is available to sign here:

http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive

kristina said...

There is also a petition up at Care2.com:

http://www.thepetitionsite.com/1/tell-chop-not-to-discriminate-against-children-with-disabilities/

Andrea S. said...

I absolutely agree that CHOP's decision is an absolute travesty, and to some extent probably does indeed reflect a de-valuation of Amelia's life.

But, when raising arguments via letters and other communication with CHOP, I would be careful to take note that "Quality of Life" in a medical context does NOT imply whether the life (or person) has value, which seems to be how many people are (mis)interpreting. In the minds of the doctors, I don't think they believe they are de-valuing Amelia or her life. What the phrase "quality of life" *DOES* refer to is, a person's ability to enjoy life, or take pleasure in being alive: judging "quality of life" is supposed to basically mean: "is the person happy with life or happy being alive?"

On this point, CHOP clearly still has made a very insulting assumption about the capacity of people with disabilities to take pleasure in life, and this has led to a decision that does result in devaluing the life of Amelia (even though this wasn't their conscious intent). But I feel it is still worthwhile noting this careful distinction because if everyone tells CHOP to start "valuing the lives of people with disabilities" then it becomes too easy for them to simply respond with the statement they have already posted on their facebook page claiming that they already do (https://www.facebook.com/ChildrensHospitalofPhiladelphia?sk=wall&filter=2). Instead, we need to de-construct their underlying assumption that simply having an intellectual disability somehow diminishes one's ability to take joy in being alive, or ability to enjoy life. In taking this tack, we might experience somewhat more success in reaching them.

Lydia's phrase at her own blog that she links above, "Life not worth living" is I think a more accurate depiction of where the CHOP doctors think they are coming from. The issue is that they seem incapable of understanding how their prejudiced assumptions about whose lives are worth living can and do lead directly to value judgments on the value of people's lives even if they don't THINK it does.

Terri said...

Thank you all, I agree that this is wrong. The heady combination of arrogance and ableism... should not still be happening in 2012. Especially at a "cutting-edge" organization like CHOP.

Penny L. Richards said...

Here's mine.
http://disstud.blogspot.com/2012/01/sighing-again.html

Terri said...

Excellent point, Penny!

illinois social security disability said...

Thanks for posting. How a hospital or a doctor can respond like this. If some in need what is the meaning of more trust worthy or less trust worthy.

MaDonna Maurer said...

I am behind on news that is for sure. I'll blame it on living overseas, but really it is due to not reading news and blogs lately.
It was a bit hard to digest this news. I'm so thankful that I've not had to battle this so far, but am thankful that I can stand with this family through the internet and prayer.
Thanks for the post, Terri!

bint alshamsa said...

I read your post and followed the link on Andrew, but I still don't see any mention of his last name. Does he have a professional website or fan club? We'd love to follow his career.

Terri said...

Thank you Madonna. We are all lucky when we do not have to stand alone!

No, Bint, Andrew doesn't have a fan site or website at this point, but I will pass the suggestion on to his mom--I think it's a great idea!