September 18, 2019

MLK, Civil Rights & Denying a Kidney Transplant

Injustice anywhere is a threat to justice everywhere.
~Rev. Martin Luther King Jr.

As I was thinking about how exactly to make a connection between Martin Luther King Jr. and disabilities/special needs, along came a blog post from Ellen Seidman over at Love That Max, quoting from blogger Chrissy Rivera about her daughter, Amelia, a 2-year with a rare genetic condition whose doctor at Children’s Hospital Philadelphia (CHOP) has recommended that her daughter not receive a kidney transplant largely because Amelia is “mentally retarded.” You can read Chrissy’s post here.

Without this kidney transplant, Amelia will die within six months to a year.

It’s unbelievable that in 2012, this could happen, and yet cognitive ability is apparently part of the standard criteria in deciding who gets (or doesn’t get) an organ donation. (And in Amelia’s case, the family is willing to use a family donor, so the issue isn’t just the scarcity of viable organs).

It reminds me of that ugly chapter in our American history when southern states were allowed to count slaves as 3/5 persons for purposes of apportionment in Congress (even though the slaves could not, of course, vote.). In CHOP’s approach, some people clearly “count” more than others.

What would MLK have done? Organized a protest in front of CHOP maybe, or called on the editor of the Philadelphia Inquirer to pen a strongly-worded editorial condemning this denial?

Thanks to the power of social media, there’s been a huge response to Chrissy’s post in just a short time and over 9,000 people have signed a petition over at, I just saw that emails are going directly the Board of Trustees at CHOP to encourage them to reconsider this decision. (I don’t envy their PR director this evening.) Will another Children’s Hospital consider taking on this case?

As I type this, our teenage son who also received a “mentally retarded” label at one point is flipping through his favorite Hebrew song videos on his new Ipad. Who really knows what little Amelia will or won’t be able to do as she gets older, if only the medical establishment will give her a second chance.

And what should everyone else be doing to help Amelia and her family? Martin Luther King Jr. said it best:
“Human progress is neither automatic nor inevitable… Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals. “