Often, when we rail against the R-word, it's hard to get people to accept that belittling people with intellectual disabilities has repercussions, hard to make the case that turning a certain group of people into a joke dehumanizes them in a way that has a long and tragic history. People don't think they're doing that, they don't mean to do that, they don't see the harm.
Well, here's the harm: A little girl getting turned down for a kidney transplant, even with a family donor, because, as the doctor kept pointing out to her mother, she has mental retardation!
The girl's name is Amelia Rivera, she is thee years old, and like so many of us, her mother has a blog. In a post at wolfhirschhorn.org, Chrissy Rivera describes a massively upsetting meeting in which a doctor -- someone we expect to value life, to fight for it, someone we expect to have an absolutely up-to-the-minute understanding of human potential -- could not be made to understand that a child with an intellectual disability could possibly have a quality of life that warranted such a medical procedure. Could not be made to understand that her parents could value her life that much. Became angry at the very notion that anybody would want to fight for a child like this. And then had the nerve to claim that this was hard for him!
We spend a lot of time fighting for inclusion and respect for our kids. We like to believe that we're past the point of fighting for their right to be alive. Yet it seems unlikely that the Children's Hospital of Philadelphia is alone in its policy of setting an IQ level as a cut-off point for this kind of life-saving treatment. How can this be, now, in 2012? Aren't we past this?
If you'd like to give the hospital a piece of your mind, there's quite an angry mob forming on its Facebook page, so take up your torch and join in. There's also a petition up at Change.org demanding the hospital allow the transplant (and another seeking changes in transplant policies nationwide). Perhaps public-relations embarrassment will do what simple human decency could not.
I'll start a list here of blog posts on the story. If you've written one or seen one, share the link in the comments and I'll add it.
- Should kids with disabilities be denied transplants? Some doctors think so from Love That Max
- Stand Up from Uncommon Sense
- Sign Petition to Fight Hospital Denying Transplant to Developmentally Disabled Child from Mom-Blog
- Who deserves a kidney? CHOP says no kidney for Amelia from Kidneys and Eyes
- The Ethics of Amelia's Transplant Story and A Few Final Thoughts on the Story of Amelia from Donna Thomson
- My Worst Fear ... Is Coming True, Human Rights, Going Viral, and What Next?, and They Feel Sorry for Me? Well, I Feel Sorry for Them from A Little Something for Me
- Quality of Life from Life With My Special Ks
- Life Not Worth Living from Autistic Hoya
- Philadelphia: Young Girl Being Denied Transplant Because Her "Retardation" Doesn't Make Her "Worthy" from Not Dead Yet
- Memo to Doctors and Hospitals from Parenting Isn't Pretty (my personal blog)
- I am BEYOND sickened by this from Who Says 8 Is Enough?
- Hospital: No Kidney Transplant for Girl With Disabilities and Good News! Child With Disabilities May Get Kidney Transplant from Care2
- No Transplant for You ... If You Have a Developmental Disability from Penny's Peeps
- Eugenics in America - HELP AMELIA from Raising Asperger's Kids
- "Mental Retardation," Quality-of-Life, and Kidneys--Oh MY!!! from Barriers, Bridges and Books
- Cognitive Disability Disqualifies Child from Transplant and A Communications Primer in the Amelia Rivera Case from Bloom
- Occupy CHOP for Amelia from Special Education Advisor
- Quantify This from Bird on the Street
- MLK, Civil Rights, and Denying a Kidney Transplant from JewishJournal.com
- Amelia's Kidney; Our Heart by Susan Senator
- Who defines what Quality of life is?? And who said I agreed with them?? from A Tall Drink of Sweet Tea
- Dying Girl Denied A Transplant Based Completely On Mental Disability from Through a Looking Glass
- Denied a Transplant from Big Blueberry Eyes
- A Stunning Injustice and Deconstructing the Bigotry from Journeys With Autism
- Amelia Rivera from Transplant Headquarters
- WOW! Just...wow from Today Is Where Your Book Begins
- When one life is worth less than another ... from Praying for Parker
- Hanging my head in disbelief ... HELP AMELIA!!! from I Can Has Autism
- Kidney Transplant Dispute from About.com Pediatrics
- Nightmares and The Fight for Amelia from Life With Joey
- When the Disability Community Works from Countering...
- Please Help! from Discovering Down's
- Quality from Fighting Monsters With Rubber Swords
- Amelia from Life and Oh-La-Dee-Dah
- Should CHOP Refuse Transplants for Mentally Retarded Kids? from Philadelphia Magazine
- A Transplant for Amelia from Dominick Evans
- Justice Delayed Is Justice Denied! Amelia Rivera's Story from Canadian Association for Community Living
- The Value of a Life from Oh Duda Day
- What Is "Quality of Life"? from Compatible With Joy-Trisomy 18
- Transplant DENIED Because of Intellectual Disability from Jumping Waves
- Mom: My Daughter Was Denied a Kidney Transplant Because She's Mentally Retarded and Update on Amelia: Family Continues Hope for Kidney Transplant from Babble
- Disability, the "Quality of Life," and Amelia Rivera from ReunifyGally
- Raise Your Voice for Dignity! and An Update on Amelia from The World of Special Olympics
- A Life-Changing Event ... for a greater population from wolfhirschhorn.org
And something of a point/counterpoints from the Huffington Post:
- Denying a Transplant to a 'Retarded' Child? by Lisa Belkin
- Everyone Deserves a New Kidney by Susan Senator
- The Value of a Life Cut Short by Amy Julia Becker
UPDATE: Children's Hospital of Philadelphia has issued a lengthy, carefully worded statement on its Facebook page declaring in part that "Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments" (as Theresa confirms in the comments below). That of course does not deny that cognitive status may be one factor considered, or a major factor, or a factor without which other factors might become less important. Should it be a factor at all?
UPDATE 2: On Sunday night, the hospital added a new statement emphasizing the importance of the patient's family in making decisions and promising to "[take] action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way."
UPDATE 3: On Monday, the hospital added the following to its earlier statement: ""The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability." The word "solely" is noticeably absent.
Also on Monday, the story began to get some pick-up by local and national media, and reports indicated that the hospital would be meeting with the family to discuss the transplant again. I'll add news stories about Amelia here as I find them:
- 'Team Amelia' backs transplant for special needs child from USA Today
- Children's Hospital Denies Withholding Kidney Transplant For Disabled Girl from CBS Philly
- South Jersey woman says daughter was denied transplant because of mental disability from WHYY
- Mom Claims CHOP Refuses to Give Special Needs Child Transplant from NBC10 Philadelphia
- Claim: Girl Denied Transplant Because She's 'Mentally Retarded' from Disability Scoop
- 15,000 Demand Transplant for Mentally Delayed Child from PRWeb (picked up by the San Francisco Chronicle)
- The fine line that Mia lives on: Should she be denied a vital kidney transplant? from Philly.com
- Starting Point With Soledad O'Brien - Transcript from CNN (scroll to bottom)
- Three-year-old Amelia Rivera needs a kidney transplant, and a doctor willing to do it from the Trentonian
- Mom Says Mentally Impaired Tot Heartlessly Denied Transplant from Good Morning America
- NJ parents: Disabled girl was denied transplant from Fox News (Associated Press)
- Denying an organ to a "mentally retarded" child and The ethics of childhood organ transplants: How would you decide who becomes a recipient? from the Washington Post
- Mother's heartbreak as doctors deny sick toddler a kidney transplant - because they say she is 'mentally retarded' from Mail Online
- Toddler with mental disability denied transplant she needs to live, mother says from New York Daily News
- Mom says special needs daughter denied life-saving kidney transplant from CBS News
- Mom claims in viral blog that disabled child denied transplant from CNN.com
- NJ Disabled Girl's Parents Narrow Criticism from Yahoo News (Associated Press)
- Parents of a Disabled Girl Denied a Kidney Transplant Blame One Doctor from Time
- Sweeney wants to prevent hospitals from denying organ transplants to the disabled from NJ.com
- Message from Archbishop Chaput: Amelia Rivera, the disabled and the sanctity of life from CatholicPhilly
UPDATE 4: On January 26, at around the time the Change.org petition went over 36,000 signatures, wolfhirschhorn.org issued a statement indicating that the Riveras have met with representatives of the Children's Hospital of Philadelphia about the situation that led to the blog post. It reads in part, "In addition to addressing Mia and the next steps with her transplant discussions, a few suggestions were made to CHOP about their involvement in a more macro view of awareness around transplant rights for the disabled, and public and medical community education around the 'mentally retarded' phrase. CHOP agreed to follow up and communicate their action items by the end of this week." Future updates are promised as progress is made. On January 30, a Philly.com report indicated that the hospital has not ruled out the procedure and had given the Riveras the information they had originally been hoping for on getting family members tested and preparing for a transplant. On February 3, the family posted a thank you message on wolfhirschhorn.org. More news stories on the progress in the case:
- Parents: Transplant for girl now a possibility at CHOP from the Philadelphia Inquirer
- Mentally disabled tot denied kidney transplant could get operation after all
UPDATE 5: The Riveras and CHOP released a joint statement in which the hospital apologized for the terrible job of communication in that initial transplant meeting. Since this blog post has become unwieldy, I'm starting a new list in a new post for this latest development.