Seventeen years after the Jensen case, in 2013 Amelia Rivera was denied a kidney transplant. According to her parents, their daughter was denied a transplant because she had a cognitive disability (Wolfhirschorn). Jensen and Rivera cases are unusual in that they garnered nationwide interest. Most such stories about disability based discrimination with regard to organ transplantation go unreported. These two cases demonstrate the dark underbelly of ingrained social and medical abuse of those with a cognitive and physical disability. Simply put, health care institutions do not value the lives of those who live with profound cognitive and physical disabilities. Study after study has demonstrated that people with a disability have significant trouble accessing health care. People with a disability, especially women with a disability, receive substandard care. Thus it comes as no surprise that when people with any sort of disability seek complex medical care on the cutting edge of modern science our presence is unwanted if not forcefully rejected.
I vividly recall the Rivera case. I shook my head in wonder. How could yet another story of organ transplant denial based on disability occur at a prestigious hospital? What I remember the most though was an essay written by Art Caplan who is the go to bioethicist for the press in the nation: "Serious Issues in Disabled Girl Transplant". I cannot find the link but I did preserve the following quote:
Whether the kidney comes from a cadaver donor or a living one, transplant teams always think about a set of medical facts in deciding whether to transplant anyone. Is the person able to go on kidney dialysis? Is she healthy enough to survive surgery? Does the patient have a donor who closely matches her blood and tissue type increasing the chance that the transplant will work? There is nothing special about the presence or absence of mental disability with respect to these questions. But morally, things get a little stickier."
I blanched when I read the proverbial but: "But morally, things get a little stickier". Things have been sticky for decades. Are the civil and human rights of those with a disability merely sticky problems? I think not. The word that comes to mind is ableism. In some cases ableism is lethal. All people know those that need an organ transplantation do not get such life saving surgery. The demand is greater than the organs available. People die waiting for organ transplants. While I have no doubt ethics committees and organ donation teams do their level best making ethical choices I believe deeply ingrained disability based bias remains a significant and unacknowledged problem. Without question, the best written statement on the ethical issues involved in organ donation and disability based bias was produced by ASAN. Link: http://aadmd.org/sites/default/files/D2%2012%20Ne'eman.pdf This statement is a grim read and cannot be chalked up to being sticky. Children and adults with disabilities do not appear on organ transplantation lists for good reason-- unarticulated bias is rampant. Simply put, the lives of people with a disability, especially those with a significant cognitive disability are not valued. If this is in doubt, I suggest people read the comment section on the latest case of a child with a disability being denied an organ transplant. Here I refer to Lilly Parra, a four month old infant who needs a transplant. According to various media outlets, Lilly was removed from the transplant list The transplant team told Lilly's mother she was not eligible for a transplant because she had diffuse cerebral dysfunction and might be developmentally disabled. In a letter from the transplant team at Loma Linda University Children's Hospital to Lilly's mother they wrote: "The Cardiology team performed an initial screening for suitability for heart transplant evaluation and determined that Priscilla was not a candidate for evaluation because of chromosomal abnormalities affecting longevity." In other words, people with Down Syndrome, Turner Syndrome, Jacobsen Syndrome, Wolf-Hirschhorn Syndrome etc. are not eligible for an organ transplant.
In the Washington Post Timothy Shriver weighed in with his support for Lilly. In an opinion piece, "The Discriminatory Reason Doctors Won't Give a Baby the Heart She Needs," Shriver raised many of the points others have made who rail against disability based bias and organ donation. Link: https://www.washingtonpost.com/opinions/this-is-the-reason-doctors-wont-give-a-baby-the-heart-she-needs/2016/04/08/d766816c-fcea-11e5-886f-a037dba38301_story.html What I fear are the cases we hear nothing about. How many lives have been lost that are not reported in the press? Equally worrisome are the comments made by readers. Some comments are shocking. Below is a random sampling of nine comments that stuck out to me as representative of the long comment thread.
1. I went to the parents' change.org site. There is a photograph of the child, Lily.
I see a child who is alive due to advanced medical support. Intubated. Eyes closed, not engaging with her environment. Her facial features are swollen, likely due to corticosteroids. A paucity of movement. This is not a child who is able to feed at its mothers' breast or hold its head upright. I am a physical therapist by profession and work with medically fragile children.
This child is existing. She is not fully living - a mere four months old and yet has already endured so much pain. I wonder if it would not be kinder to discontinue advanced life support and let nature take its course. I would not want my child to suffer as is this child.
2. Seriously, this is probably a very sensible decision. Given that there is a waiting list, I surmise that there are many infants waiting and that there are relatively few transplants available. Any reasonable allocation of resources would prioritize those with the greatest chance to have a normal, healthy life. It may be cutthroat, but it's probably the right thing to do.
3. I could accept Mr. Shriver's argument if doctors could just go down to Organ Depot and pick up whatever organs might be needed by their patients. Unfortunately, that is not the case, and those organs that become available must be apportioned out in some way. This is a tragic situation, but the bottom line is that Lily's parents have made choices that they expect others to pay for in time, money, and in this case, a transplantable organ.
4. Because of the extremely limited availability of organs, every transplant involves "discrimination." The follow-up story should be about the baby who received the heart this baby was denied. This poor infant's four month's of life have included one painful medical procedure after another. (And don't kid yourself. Fragile infants can only be given very limited pain-killer.) I wouldn't put a dog through what this baby has endured.
5. The sad reality is there is a limited supply of hearts to transplant. Using one on this child means that another child dies. Cold, hard decisions need to be made.
6. A hard but sound decision. Nobody said medical ethics was easy.
7. If this baby is destined to live a debilitated short life and then die, why should we pay for this effort?
8. You can't fix someone's chromosomes with a new heart.
9. Not only is this infant suffering pain, which she is too young to talk about, but she is incurring great medical expenses that the rest of us are paying for.
Several themes can be identified that are objectionable. Here is a short list.
A "normal" baby's life is more valuable than a child with complex medical needs.
Death is preferable to a life of pain and suffering. The pain and suffering are an inevitable part of life with a disability.
A heart is a rare commodity that should not be wasted on a child that might have a disability.
A willingness to predict the future life of an infant with a significant disability as being compromised and limited.
The forceful rejection that health care is a human right.
The assumption that life with a disability is inherently inferior.
I should have had the common sense not to delve into the comment section at the Washington Post. I did so because I know ableism has the potential to be lethal. In this latest case of organ transplantation denial for an infant with a disability it seems likely Lilly will die. This death is no doubt sad but hell, someone has to make a hard decision. I find this unacceptable. This supposedly hard decision is important because it firmly demonstrates how we value some people more than others. This valuation system has been and remains potentially lethal to people with a disability. Organ transplant teams are essentially gatekeepers. They get to decide who lives and who dies. An unenviable task--one that is obviously not free of disability based bias. If such bias did not exist I would not be writing about yet another person denied a life saving procedure because they had a disability.
This makes me so angry, but it sure doesn't surprise me. That's poor baby.
The more I learn about how dangerous ableism is the more bitter I become. It annoys me how our society ignores the real problems in disabled people's lives. I don't speak out much about ableism because I know I will come across bitter and ungrateful. You can't have a real discussion about ableism because people don't want to hear that. They want to hear how you've overcome your disability and what inspiration you are to society. You'll never be seen as a whole person.
Ashton, I have been painfully slow in embracing the word ableism. First, the vast majority of people without a disability knows what the word means. When one explains the meaning of the word many simply get angry. More often than not people roll their eyes walk away mumbling about that such a word is political correctness run amok. Second, ableism undermines the dominant narrative about disability--the overcoming and inspiration myths that are widely held. Despite these problems, I am convinced now is the time to push that narrative.
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