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A Stunning Injustice: The Case of Amelia Rivera

****This is a very special guest post by Rachel Cohen-Rottenberg of Journeys with Autism.  She is heavily involved in raising awareness about the case of Amelia Rivera. Amelia Rivera is the little girl being refused an organ transplant because of “mental retardation”.

I spoke with Rachel and asked how I could help and she provided this post, which is the first of two. Please read these posts and help spread the word about this grave injustice.****

 

Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane. — Martin Luther King, Jr., March 25, 1966

By now, many of you are familiar with the story of Amelia Rivera, a three-year-old child with Wolf-Hirschhorn Syndrome who has been denied a life-saving kidney transplant at the Children’s Hospital of Philadelphia on the basis of her intellectual disability.

Amelia’s mother Chrissy has described the circumstances of the denial in her post Brick Walls. At a meeting with Amelia’s doctor, Chrissy and her husband were given two pieces of paper on which the words “Mental Retardation” and “Brain Damage” were highlighted in pink. Here is part of the interchange that ensued between Amelia’s mother and the doctor:

I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”

“Yes.”

I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.

A bit of hope. I sit up and get excited.

“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.

“STOP IT NOW!” The anger is taking over. Thank God. Why did it take so long to get here?

When I first read these words, I felt so outraged by the injustice, so heartbroken for Amelia and her family, and so disgusted by the doctor, that I was at a loss for how to respond.

Not anymore. This case is not just about one precious child. It’s about the ways in which the devaluing of disabled lives has found its way into a discussion of whether to let this precious child live.

The sheer weight of ignorance about the lives of disabled people couldn’t be any more clear than in the doctor’s presumptions about Amelia’s quality of life. As the late Harriet McBryde Johnson wrote in her brilliant article Unspeakable Conversations, the judgments of medical professionals about the quality of life of disabled people tend to be greatly at odds with the judgments of disabled people themselves: “The social-science literature suggests that the public in general, and physicians in particular, tend to underestimate the quality of life of disabled people, compared with our own assessments of our lives.” This disparity begs the obvious question: On what basis can a doctor — or anyone else, for that matter — possibly assess the future quality of another person’s life? Unfortunately, there is an answer to this question, and it’s not pretty: The basis for such a judgment is that the person will not live the life of a so-called “normal” person, and that therefore, the person’s life is diminished in worth.

The Nazis had a term for such a life: Lebensunwertes Leben. Life unworthy of life.

And because Amelia has been deemed unworthy of life, she has been given a death sentence by her doctor. As though that weren’t enough of an outrage, enter the social worker, who said to Amelia’s mother:

Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy?”

[W]hat happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?

For anyone who is unsure whether these words mean what you think they mean, let me translate: According to the social worker and her crystal ball, Amelia will not be capable of keeping track of her medications when she is thirty, so she should die in the next six to twelve months.

Never mind that Amelia may be fully capable of keeping track of her medications at thirty. Never mind that if she can’t keep track of her medications when she is thirty, society has an obligation to provide her with assistance to ensure her quality of life. Never mind that every human being is owed pure respect and limitless love. Never mind that we actually live in society with other people who have the choice to either help us or leave us to die. By the social worker’s reasoning, people who cannot remember to take their medications, people who cannot lift their hands to reach their medications, people who cannot put their hands to their mouths to take their medications, people who cannot afford medications in the first place, have lives unworthy of life.

I wish I could believe that the danger facing this one little girl stops with her. I wish I could believe that this case is an aberration. But I know better. Consider the following:

A 2006 article called Dispute Over Mental Competency Blocks Transplant describes the case of Misty Cargill, who was denied a kidney transplant because of her intellectual disability, and contains the following statement:

When Mary Ellen Olbrisch, a clinical psychologist at Virginia Commonwealth University Medical Center in Richmond, surveyed nearly 100 transplant centers, about 60 percent said they’d have serious reservations about giving a kidney to someone with mild to moderate mental retardation.

A 2010 article called Transplantation and Mental Retardation: What is the Meaning of Discrimination?, contains information on international organ transplant guidelines, some of which note that intellectual disability should contraindicate organ transplant:

A consensus report from the Pulmonary Scientific Council of the International Society for Heart and Lung Transplantation states that the presence of MR represents a contraindication for transplantation. The report states that transplantations should not be provided on the basis of ‘the documented non-adherence or inability to follow through with medical therapy or office follow-up or both, untreatable psychiatric or psychological conditions associated with the inability to cooperate or comply with medical therapy, absence of a consistent or reliable social support system’. (728)

Please note the rather chilling idea that the lack of a “social support system” should amount to a death sentence

Another 2010 article, called What do you expect? She is mentally retarded!, contains an excellent discussion about the depth of the problem, with the testimonies of parents who have seen their children denied organ transplants:

[P]arents have reported that it has not been unusual for their sons or daughters to be disallowed recipient status for organ transplant surgery, with disability given as the reason for exclusion:

“I was told by her cardiologist that she is not eligible for a transplant because of her Down syndrome.”

“We were told that if he was ‘normal’ like us he would be a great candidate for a corneal transplant.”

“The first doctor we saw told us that no transplant could be done because our son was ‘retarded’”.

“I was told that at the university hospital they will transplant a kidney but not even consider a heart transplant for someone with Down syndrome”.

If anyone believes that the devaluing of the lives of disabled people is simply a question of architectural barriers, job discrimination, and social exclusion, think again. Sometimes, it turns lethal.

But we can act to save the life of Amelia Rivera, and all the other Amelia Riveras out there. Please do the following:

Leave a message on the Facebook page of the Children’s Hospital of Philadelphia:

http://www.facebook.com/ChildrensHospitalofPhiladelphia

Contact the Children’s Hospital of Philadelphia’s Family Relations Office by phone at 267-426-6983 or by e-mail at FamilyRelations@email.chop.edu.

Sign the petition at Change.org:

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

Consider contacting the following media outlets so that Amelia’s story reaches a wider audience:

http://www.facebook.com/WBRETV?sk=wall
http://www.facebook.com/PhillyDailyNews
http://www.facebook.com/pages/Philadelphia-News/129580433764477
http://www.facebook.com/phillyinquirer
http://www.facebook.com/6abc.ActionNews

And please, post to the Facebook page set up to support Amelia and her family:

http://www.facebook.com/miastransplant

Together, we can help this child live.

Sources

Johnson, Harriet McBryde. 2003. “Unspeakable Conversations.” The New York Times, February 16. Accessed January 15, 2012. http://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html?pagewanted=all&src=pm.

Panocchiaa, N., M. Bossolaa, and G. Vivantib. “Transplantation and Mental Retardation: What is the Meaning of Discrimination?” American Journal of Transplantation 10 (2010): 727–730. doi: 10.1111/j.1600-6143.2010.03052.x.

Shapiro, Joseph. 2006Dispute over Mental Competency Blocks Transplant.” NPR, December 22. Accessed January 15, 2012. http://www.npr.org/templates/story/story.php?storyId=6665577.

Simpson, J.H. “’What do you expect? She is mentally retarded!’: On Meeting the Health Challenges of Individuals with Intellectual Disability.” The Internet Journal of Health11, no. 1 (2010). http://www.ispub.com/journal/the-internet-journal-of-health/volume-11-number-1/what-do-you-expect-she-is-mentally-retarded-on-meeting-the-health-challenges-of-individuals-with-intellectual-disability.html.

Wolfhirschhorn.org“Brick Walls.” http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/. January 10, 2012. Accessed January 15, 2012.

© 2012 by Rachel Cohen-Rottenberg

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About the author

Lost and Tired

I'm Rob Gorski and I started this blog in January 2010 as a means of sharing my family's real life journey raising 3 boys on the #Autism Spectrum.
It's important for people to understand what Autism can really be like and the impact it has on the family. We aren't a TV show and there are no actors. This is our struggle, our journey...and it's all true.

I am "Lost and Tired" and
this is "My Reality #Autism".

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