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Friday, April 29, 2016

Ableism and Organ Donation: A Deadly Combination

In 1996 Californian Sandra Jensen, age 34, received a heart lung transplant. Jensen had Down Syndrome and was originally informed that heart lung transplants were not performed on any individual who had Down Syndrome. In fact no person with Down Syndrome had ever received such a transplant. Jensen's case drew national attention and a heated debate took place over who was and was not eligible for organ transplant. After a public and heated battle, Jensen did receive a heart lung transplant. This has been a recurring theme in hospitals nationwide.

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:'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: 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' 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.

Sunday, April 24, 2016

Spring Has My Bones Aching

I have been experiencing a philosophical throbbing ache in the marrow of my bones in recent weeks. The ache is painful. The ache is surely not depression that has gripped me off and on in recent years. This ache is different. It is a low level ache akin to a non essential app on a cell phone that drains the battery. I am in the words of James Taylor classic song "Running on Empty." I am running on empty because I live in an ableist world. Ableists abound. Bipedal people sure do love their feel good stories. Unbeknownst to the vast majority of people who insist  on "helping" me is that ableism is the bane of my existence. Ableists can see only one thing--what I cannot do. I am not truly human but a living breathing stereotype of a life gone horribly wrong. My existence is tragic. Oh my, you are paralyzed--I am ever so sorry. "What can I do to help you?" I never reply with what I am actually thinking. When I hear "how can I help you" uttered by a stranger my first thought is "fuck off asshole". Of course I never say this to the well meaning person who is ever so eager to help me. I do not say "fuck off" because I do not want to be physically or verbally assaulted. I don't want my wheelchair ripped out of my hands as I put it inside my car. I do not want to have a door slammed in face.  In the words of Stephen Kuusisto:

The ableist isn't in the mood to hear you. He's tired of your complaining. He was trying to do something good for your kind. He was reminding TV reviewers that we have to save the poor cripples. The ableist doesn't want you to mess up his story with the facts. He remembers the good old days when the lights would dim in America's theaters and there'd be an advertisement for the March of Dimes and there were poster children and the collection of cans came around the audience row by row. 

To repeat: the ableist isn't in the mood to hear you. Ableists do not listen. They never have. Ableists did not listen to Ed Roberts when he spoke about cripple power. Ableists did not listen to Paul Longmore when he burned his book. Ableists did not listen to Mary Johnson when she critiqued Clint Eastwood and Christopher Reeve. Ableists will surely not be reading these words. Ableists do not listen because they have no interest in the lives of those who have a disability. When we cripples speak the truth, when we cripples push back it destroys the well worn stereotypes associated with disability. We cripples want what typical people want--a safe and accessible place to live, a job, and access to mass transportation so we can get to work and navigate the world. This is too much. The ableist who runs across the street to help me is in fact the enemy.  This hearty soul is a good person and provider. This ableist might be a member of the church and goes to mass every Sunday. The ableist might be a pillar of the community. The ableist could be the mayor of a small town. Few if any ableists wake up in the morning and think I will discriminate against the handicapped today. Ableism, like the ache in my bones, is far more subtle.  The ableist wants to kill me out of the goodness of their collective souls. Try and access health care and one will receive a litany of apologies. Sorry the examination table is not accessible. Sorry we have no accessible patient rooms. Sorry we cannot lift you onto the Xray table. Sorry the accessible entrance is locked. Sorry I have no idea where an accessible lab is so you can complete blood work. Sorry during the procedure your wheelchair must be left in the hallway unattended. My you have suffered so much in your life perhaps you might consider foregoing life sustaining antibiotic treatment. The ableist loves me. The ableist does not want me to suffer.

In many ways I am the model of success in the estimation of ableists. I was paralyzed, worked hard to be "rehabilitated",  and have over achieved. I have "overcome" my disability in spectacular fashion with my Ivy League PhD and series of academic jobs. I have shamed all those with a disability that are lazy slackers. I am one of them--typical in every way except one--I am paralyzed. However, I become a problem again when I open my mouth. Ableists do not like what I have to say. Oh the ableist will cluck about and think disability pride is cool. The ableist will reach into his pocket and give a donation to some kick starter fund or a adaptive sport program. Trouble arises when I start speaking about the gain associated with disability. You see my value system is radically different. I see the folly of our beloved myths about autonomy and self determination. In the words of Paul Longmore:

deaf and disabled people have been uncovering or formulating sets of alternative values derived from within the Deaf and disabled experiences... these have been collective rather than personal efforts. They involve not so much the statement of personal philosophies of life as the assertion of group perspectives and values. This is a process of Deaf cultural elaboration and of disabled culture building. For example, some people with physical disabilities have been affirming the validity of values drawn from their own experience. Those values are markedly different from, and even opposed to, non disabled majority values. They declare that they pride not self-sufficiency but self-determination, not independence but interdependence, not physical autonomy but human community. This values formation takes disability as the starting point. It uses the disability experience as the source of values and norms. 

In short, Longmore asserts that a cultural divide exists between those with and without a disability. To me the tragedy is those without a disability either refuse to acknowledge this or reject the idea entirely. The more strident one becomes the easier it is to dismiss the scholar or writer with a disability as unbalanced, a person that embraces a screed, is illogical and driven by emotion. Thus my words fall on deaf ears (pun intended) and are quickly dismissed. In contrast, those with a disability that conform to existing stereotypes associated with disability are beloved. The best and most controversial figure in this regard would be Christopher Reeve. His 1996 speech at the Democratic National Convention moved those in attendance to tears. All news outlets gushed about Reeve's speech as one of the finest statements about the human spirit. While Reeve was being lauded, Harriett Mcbride Johnson was on the convention hall worried about her personal safety and horrified by the reaction to Reeve's speech. In her memoir, Too Late to Die Young, she brilliantly describes what took place and wrote Reeve was akin to a ventriloquists dummy. Those that remember the convention recall just one thing--Reeve's prime time made for TV speech. Justin Dart, a well connected and life-long Republican who held high office during the Reagan era, spoke the next day about the disability rights and the ADA . Dart spoke in the middle of the afternoon and precious few paid any attention.

In recent years the only person with a disability that has had widely acknowledged success conveying a disability rights perspective was Stella Young. In 2014 Young gave a TED Talk "I'm Not Your Inspiration, Thank You very much". Her talk was good but it did not resonate for me. Young was a comedian and journalist. Through humor she did a wonderful job of undermining inspiration porn and stereotypes associated with disability. I am much rougher around the edges. I speak my mind and sometimes do so with force. I am also a story teller as are most academics. It is my hope that if enough of we people with a disability tell our stories the hordes of bipedal that surround us will listen some day. I know we people with a disability have come a long way. No longer are we forced into institutions where our lives were carefully hidden away. That was a giant leap forward. We have also forced people to think about the social versus medical model of disability. Yet much work remains to be done. Disability rights and civil rights are somehow perceived to be different. The ADA is widely disparaged and is often deemed an unfunded Federal mandate. In response to ingrained disability based bias that stubbornly remains ever present is perhaps the reason my bones ache. Please help me make the ableists go away. I do not want to be lonely any longer. I need you. I need my people. I need a community. Bipeds or typical others need not apply.