Monday, January 16, 2012

The transplant debate

FINALLY -- major news outlets have written about whether a New Jersey child who has a genetic condition and intellectual disability should be denied a kidney transplant. The blogosphere has been abuzz with opinions by parents of children with special needs over the last couple of days and over 38,000 people have signed a petition asking the Children's Hospital of Philadelphia (CHOP) to reverse its decision.

Today in the Huffington Post, Parentlode blogger Lisa Belkin argues that Amelia Rivera (left) should not be eligible for a transplant. And in a companion piece, Susan Senator, author of Making Peace with Autism, argues that she should.

Check out this interview with the family on NBC.

You can read Amelia's mother's account of a conversation she had with a transplant doctor at CHOP about Amelia's eligibility. And you can read a number of responses CHOP has posted about its transplant criteria on its Facebook page.

You may also be interested to read these recent BLOOM posts about an ethics conference at the Montreal Children's Hospital which looked at how cultural devaluing of children with disabilities plays out in their care:  The disability paradox; Costs, quality-of-life ratings puts complex kids' care at risk; Burden of kids not whole picture, ethicist says; and A fate worse than death.


I left a comment on Lisa Belkin's piece at Huffpost and have gotten several responses to mine that keep my blood boiling, or perhaps, simmering. So much to do, Louise -- we have so much to do!

Sometimes I tell myself I won't read the comments because I know the attitudes that are going to spill forth. I was speaking to a doctor here yesterday and he made a comment about how daunting advocacy is because it means changing a cultural mindset. Viewing people with disabilities as inferior is part of our culture.

Hello Everyone,

Many of you know me as an intelligent, passionate, and articulate contributor to BLOOM. For, I always write using honesty, wisdom and love.

Moreover, as an adult with a monderate case of cerebral palsy, I have learned much about those with cognitive or severe disabilities, here on the BLOOM blog. BLOOM has also helped me find my voice, as I vow to never tire of writing or speaking in a manner which demonstrates the common humanity of all, including those with and without disabilities. Every person deserves the right to pursue or live a life which they value.

Hence, I humbly share the following words with the Rivera family: "No one with a disability can live soley for the love of their parents or siblings. Everyone yearns to participate, contribute, and belong to society as a whole. Love Amelia with all your hearts, but do what you must in order for her to have a life which she, and she alone, can cherish."

Best of luck with the transplant.

Yours truly,

Matt Kamaratakis