14 January 2012

Life Not Worth Living

Trigger warning: Extensive discussion of ableism and eugenics, mention of forced sexual assault, repeated quotes of the r-word, and extended direct quote of narrative of an extremely triggering situation. Also some nasty comments.

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An accessible audio recording of this post:



Update 15 Jan. 2012: You can sign both petitions here and here, thanks to Sunday Stilwell and Katy Ahern. I've provided email addresses of the transplant team and administration, so all signatures will send an email to all of the targets.


Life Not Worth Living


Shame on the Children's Hospital of Philadelphia. A crying shame.

Just four days ago, on 10 January 2012, a young girl with Wolf-Hirschhorn Syndrome, a rare genetic disorder, was taken to CHOP for a nephrology appointment.

I can't describe what happened. I can only give it to you straight from Amelia's parents.

I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”

The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.

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?

The social worker is writing some things down. Not sure what. She casually gets up to take a call. My eyes follow her to the phone and I see Joe’s face. His mouth is open, his face is pale and he is staring straight ahead of him at the white board.

Rage fills the room. I point in his little, brown pudgy face. “Do not talk about her quality of life. You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don’t agree she should have it done? Fine. But tell me who I talk to next because SHE WILL HAVE IT DONE AND IT WILL BE AT CHOP.”

I see the social worker quickly writing down what I just said. Joe hasn’t moved. Amelia is still asleep.

The social worker decides to join the conversation. “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?”

I speak through gritted together. “YES, I HAVE DONE ALL MY RESEARCH.”

She smirks a little. “Well, what 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?”

In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”

The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”

“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”

“Yes, but it is different for her. She is already brain damaged and mentally retarded.”

He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”

The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”

I am beginning to realize I want this over with so I can move onto the next person who will help me with the transplant. So I say the words and ask the questions I have been avoiding.

“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes. This is hard for me, you know.”

My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”

“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”

“And then who do I see?”

“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”

You can read the rest at "Brick Walls."

So this doctor thinks he can play God. Decide on a whim who will live and who will die, who deserves to live and who does not. Isn't that exactly what Adolf Hitler did? Following the widely successful idea of eugenics, Hitler adopted it to whole populations. People with disabilities? Little people? People with mental illnesses? People with intellectual disability? Gay, bisexual, or transgendered people? Jewish or Romani people? Serbs or Poles? Untermenschen. The best translation I can produce for that German word is "sub-humans." Not quite worthy to be called human.

It starts with this. The assertion that because Amelia has intellectual disability, hers is life not worth living. That statement cannot be isolated and confined to this one incident, this one doctor, this one point in time. It has tremendous ramifications for all of us, quite possibly for anyone who regularly reads this blog.

I once read speculation1 that Hans Asperger's seminal paper had been couched in Nazi-style terminology in order to escape deep scrutiny, and that Asperger wanted desperately to save the children at his clinic from being subjected to the eugenic policies of the Nazi Party. Because people with developmental delays, people with developmental disabilities, people like me would have been among the first to go to the death camps.

Autistic people fall under the broad umbrella of people with developmental, intellectual, or cognitive disabilities. We are as diverse in our disabilities and differences as we are in our personalities, but this we share with Amelia. We share the stigma, prejudice, and bigotry to which people like us are routinely subjected. We are collectively victims of deeply institutionalized ableism -- the idea that certain groups of people are superior or inferior to other groups of people on the basis of ability or disability.

How can any doctor who has taken the Hippocratic oath not-to-harm insist that because Amelia has intellectual disability, hers is a life not worth living? Doctors are sworn to protect and preserve all life. It does not matter if the person rushed into the emergency room is a serial rapist and murderer of small girls and babies, or if the person in the intensive care unit was one of the murderers under the Khmer Rouge or in the Srebenica massacre, or if the person needing surgery were Ayman al-Zawahiri, Al Qaeda's new number one. Under the Hippocratic oath, there is no room for judgment or assessment.

No life is more valuable than another.

Doctors swear this.
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow. I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism. I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug. I will not be ashamed to say "I know not", nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery. I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God. I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. I will prevent disease whenever I can, for prevention is preferable to cure. I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm. If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Their oath is to serve all human beings. Not some human beings. Not righteous or morally upright human beings. Not non-disabled human beings. Not typical human beings. All human beings.

What this doctor said can be translated thus -- Amelia is not a human being. She is sub-human. Untermensch.

But who is he to judge her quality of life? How can anyone look at any person with a developmental or intellectual disability and judge the quality of that person's life? Only that person can do that. We too have the capacity to live happy, meaningful, and fulfilling lives. We too have the right to determine our needs and desires as far as we possibly can. We too have the capacity to love and to be loved, to feel empathy and to receive empathy. We have loving families, like Amelia's loving parents. We have the capacity to form friendships. We have the capacity to make meaningful contributions to society, even if those contributions are comparatively small or not particularly newsworthy.

What is our quality of life, for we disabled people, we people with developmental or intellectual disabilities? We define it.

The moment people like this CHOP doctor state that people like us are ineligible to undergo a life-saving procedure because our quality of life is not good enough, we have lost. We have lost.

Because that is playing God. Who are you to determine whose life is worth living? Amelia's life is worth living. My life is worth living.

Your eugenic theory of ability-superiority can go to hell.





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1 I believe this may have been in Adam Feinstein's A History of Autism, but I do not have a reference offhand.

19 comments:

  1. I disagree with some of this sentiment but don't have the time to explain in detail now...probably later. For now I'll just say that giving someone an organ means taking it away from someone else - imagine being the parent of an intelligent healthy child and hearing that you lost out to someone who most likely won't live past 18 or so!

    I am also more than a bit troubled that the author felt the need to call attention to the doctor's "Peruvian accent" and "brown, pudgy face". Maybe there's some latent anger that the decision-maker isn't white or "American" enough...

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    1. Firstly, I think the author was describing the man in order to paint a clear picture of him rather than pointing it out to make note of the difference. (If the doctor had been a white man named Johnson, I'll bet the author would have described the author's blonde or brown hair, pale face, possible Midwestern or New York accent or whatever.) As a writer of fiction as well as this blog, I often note the sound of an individual's accent or the color of his or her skin in order to give the reader a better descriptive image.

      Secondly, the family specifically noted that one of the members of their family would be voluntarily willing to donate an organ (if the parents weren't a match, that someone in their family most likely would be), rather than taking someone else's "precious organ" away from them. Your line of reasoning is incredibly sick -- if someone may not live past eighteen (and there are a number of people with Wolf-Hirscchorn who have lived long past eighteen), suddenly, that person's life isn't worth saving? You are placing a quantitative value on a human being's life. No life is worth more than another. If you are able to save a person's life, you are morally obligated to do so. Period. If you attempt to justify not saving someone's life by any other reason, you are placing more value on some people over others, and are playing God. God does not make garbage.

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    2. Anonymous, you're making a few very questionable assumptions:

      a) You're assuming that an intelligence is a measure of worth. What's next? We rank order people on transplant lists by IQ? So if someone has a higher IQ than you do, you can die waiting? I don't think so.

      b) You're equating "healthy" with "able-bodied," ignoring the (to me) obvious fact that "disability" is not the same as "sickness."

      c) You're assuming that you've got a crystal ball and can tell whether an organ recipient is always going to be able-bodied. No one knows the future. Disability can happen to anyone at any time. That's why people fear and reject those with disabilities. We are a symbol of the fragility of human life.

      And, being the parent of a 19-year-old typically able-bodied daughter, I can tell you for a fact that if, God forbid, my daughter needed an organ transplant, I would not begrudge a person with Down's Syndrome, or Wolf-Hirschhorn Syndrome, or autism, or any other disability getting that organ if he or she had been waiting on the list longer. There is no way in the world that I'd sit there and demand that some other mother lose her child. Mothers of special needs kids love their children every bit as much as I love mine. We are sisters, and that's a trust I would never betray.

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    3. @ Anonymous: If the girl mentioned in Lydia's article doesn't live past the age of eighteen, it won't be as a result of her intellectual disability, it will be as a result of some doctor violating their Hippocratic Oath. Believe me, I've known intellectually disabled people live well into their sixties, and while many of them aren't able to do more than the most basic jobs, those are just the types of things that those of average intelligence and above just don't want to do, thus increasing the value of intellectually disabled people exponentially.

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  2. Anonymous: It's a shame that you're to afraid to identify yourself. Perhaps that you know how wrong you truly are but are afraid to admit it to yourself. I have developmental disabilities also and to say what you have gives me feelings that I can't even describe, and disgust doesn't even come close. Lydias' response makes perfect sense. I actually feel sorry for you. I don't know what happened in your life that made you feel this way about the value inherent in others. I can't help but wonder if you would be of the same opinion if you were the parent.. Or what if you were the person waiting...

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    1. Firstly, everyone seems to be attacking the first poster for being evil and sick, please stop. Aren’t we here to discuss an issue and come to a fair conclusion? To do this, we need to address the counter argument and to be respectful to those with different beliefs. Having a completely one sided argument is hardly worth having, it’s just everyone agreeing, not actually coming to any better conclusion.

      Secondly, in the article the doctor is compared to Hitler. This is a gross exaggeration and insulting to the doctor. How dare you compare a doctor who has undoubtedly helped people to such a heinous individual? Even if you disagree with his decision, to compare him to Hitler is simply not close to the reality of the situation. Do you think this doctor WANTED this case? It was undoubtedly thrown on his lap and he was forced to make a decision based on the facts given to him. You seem to be trying to make this person into some kind of villain when he’s probably just a normal person like you or me.

      If the girl’s family is willing to provide the organ then I see nothing wrong with the procedure. However, I do believe that if the family were relying on an anonymous donor the doctor would be right. If there were infinite organs available for transplant and infinite resources then there would be nothing wrong with giving any person a transplant. However this is not the case, we live in a world of finite resources. Because there are a finite number of organs available for transplant, it is my understanding that by giving an organ to one person it is denying another person an organ (Please correct me if I’m wrong). We must be realistic. This girl will never have the ability to contribute to society. Not to say that that is wrong. From the information given in the article is seems to be the truth. If a doctor is forced to pick between a normal child and a permanently damaged child (if the term damaged is offensive, I apologize, it is not my intention to offend anyone) I find that it would be wrong not to give it to the normal child. The normal child will have the ability to contribute to society and to help others while the permanently damaged child will never be able to, not from any fault of her own, but from fate. Neither child deserves to die, however the facts suggest that the normal child will have a greater ability to help society than the damaged one. I know I will be branded for this opinion, but I find that it is logically and ethically the best solution to save the normal child. Any result of this kind of situation is awful, the question is which one is least awful. If you disagree with my views PLEASE tell me and back it up with evidence of some sort. I’m fine with admitting when I’m wrong as long as I’m treated with a level of respect.

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    2. First. You can do all the good deeds you like, but no amount of good deeds excuses an evil one. Have rapists or burglars or murderers donated to charities or spent time volunteering in various community service initiatives? You bet. Does that make them good people? Absolutely not. Those deeds are certainly good, and I wouldn't condemn doing things like giving to charity or volunteering in the community no matter who did it. But all the good deeds in the world do not excuse any awful one.

      Second. What the doctor said, and the implications of what that doctor said, are exactly aligned with Hitler's ideology. The only reason he gave for denying the operation was the girl's intellectual disability. Not other medical conditions. Not donation coming from a family member rather than an anonymous one (the family offered!). No other reason. That is something directly from Nazi propaganda.

      Third. You are right about one thing. The doctor is a normal person like you or me. All people are capable of doing evil and inhumane things. The doctor himself is not an evil person. His actions and what he said, those things are evil by any reasonable standards of morality.

      Fourth. You state that "[t]his girl will never have the ability to contribute to society." That is patently untrue. People with cognitive and intellectual disability can and do make positive contributions to society. Have you ever heard of TASH? It is a national advocacy organization primarily led and run by people with developmental, intellectual, and cognitive disabilities, who regularly make positive and meaningful change in advocating for the rights of people like themselves and like the girl in this incident. I know people who work with TASH. What about SABE? Self-Advocates Becoming Empowered is an organization run and led by people with intellectual disabilities, including people with Down syndrome, who are all considered to have varying levels of cognitive impairment.

      Don't tell me that people with intellectual or cognitive disabilities cannot contribute to society. That is wrong, untrue, and ableist.

      Your solution is neither logical nor ethical. You are placing a value on a person based on your perceptions of how her disability will affect her life, rather than from the perspective of a person like her, who also has a developmental, intellectual, or cognitive disability. That is subjective and limited at best, and grossly fallacious at worst. According to your logic, people with no personal experience in what it is like to live as a disabled person ought to make life and death decisions about people with disabilities without including them in the process based on the assumption that they are damaged and unable to contribute to society. That is not logical.

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    3. Can this anonymous please tell me their definition of "normal" AND then tell me what "NORMAL" children need transplants. It's not as if transplants are done on healthy children.

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    4. Lydia, I just found out that you interpreted my message as some kind of verbal attack. I want to apologize for any miscommunication. It was certainly not my intention to sound aggressive in any way.

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  3. As a care provider, quality of life is the main issue I deal with every day. It's my opportunity to communicate with God in that it begs the question of the healthiest and most loving thing to do in any given situation. When I frame my question with that in mind the answers become simple and obvious. Life...and as usual Lydia is right on here...is a qualitative experience much much more than a quantitative one. If we change our mindset to think that way all our lives will improve. OK...I don't usually respond to responses to blogs because the article is the issue; not a debate with a faceless responder. We lead by example and we lead with our love and then every life is worth living.

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  4. Anonymous said: "For now I'll just say that giving someone an organ means taking it away from someone else - imagine being the parent of an intelligent healthy child and hearing that you lost out to someone who most likely won't live past 18 or so!"

    I respond:
    Firstly, do you imagine that transplant waiting lists are like reality TV shows where toddlers compete for the crown kidney? Or perhaps, it's magazine clearinghouse contest where the winners are video taped and played on commercial TV. Or perhaps, it's an adventure show where contestants get to vote kids off the transplant list. Really?

    Secondly, there are no guarantees of "X number of years" for any transplant recipients regardless of underlying diagnoses. I'll assume you are not a parent of a child waiting for transplant or you would know this. In this particular case, had you really read the article, you would have understood that this issue is not about being on a donor list. It's about the surgery and nothing more.

    You insinuate that only intelligent people are deserving of the privilege of life. Are you certain that you and all your loved ones meet this standard you've set? Furthermore, please define "intelligent health." Are you insinuating that only high intelligence is healthy? Scientific studies have shown that emotional health (EQ) is much more related to "quality of life" than intelligence. You might think of checking your own EQ.

    Lastly, it is apparent to me that the family used the adjective of "Peruvian" to identify the doctor without personally naming him. If you had done research, you would see the head of the Nephrology transplant team at CHOP is indeed, from Peru. The mother did not use derogatory language regarding this man's ethnicity.

    Perhaps next time you should fact check.

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  5. I'll start out by saying I fully support this young woman's quest for a new organ and think it is sick that someone would prevent her from getting a donation from her family.

    Whether or not they missed some of the facts in this article, which I believe they did, It seemed pretty clear to me that anonymous was not saying that the life of someone who wont live past 18 is not worth saving. That's now what they are saying at all. They were saying that it does not seem reasonable /in their opinion/ to save the life of someone who will live only until 18 rather than someone who may go on to be 80. Furthermore I believe that it is not anyone's place to tell whoever this is or anyone else what they are "morally obligated to do;" what I cannot do is let someone push what they think is "moral" behavior on someone else who thinks otherwise; this is unacceptable to me and the point when I need to say something.

    I wish the best for Amelia and her family and like both of you I think she deserves a new organ, but the oppressiveness and, in my opinion, misunderstanding I'm seeing here against anonymous has made me uncomfortable enough to say something. To Anonymous, I would suggest you read the article more carefully next time so your response does not generate so much backlash.

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    1. Andrew, the author very clearly implied that it would be awful to see an organ donated to someone who might not live til eighteen as opposed to someone who would be expected to live past eighteen. The natural conclusion of that argument is that it is not worth saving the life of that person. That's where it follows.

      What I cannot do is let someone attempt to make all morality relative and subjective. If you allow for subjective morality, you also allow that morality according to Hitler or Bin Ladin is acceptable in that person's opinions. I highly doubt you think that Hitler's ideas of morality are acceptable, and if you can condemn Hitler, you also condemn the idea of absolute relativism. Absolute relativism means that all ideas of morality are equally valid and acceptable. Any other form of relativism is not relativism, because relativism allows for universal validity based on subjective experience. That is unacceptable to me and the point when I need to say something.

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    2. I believe that morality can and should be subjective and relative. If you allow for absolute morality, you get situations in which you believe it is moral to let a billion people die instead of one person. So yes, while I think it is moral to save someone who will live longer, you think it would be immoral to take the organ from one unwilling person even if it could be used to save every other dying disabled patient in the world; such is absolute morality, and comparatively it does not make my utilitarian outlook seem as ugly. If I had a child who would not live to 18 and someone else had a child that would live to 80 and they both sought after the same organ to survive, I know what I would do and I would feel morally acceptable doing it.

      All moral codes have an ugly side. Therefore I respectfully disagree.

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    3. Andrew said: "it does not seem reasonable /in their opinion/ to save the life of someone who will live only until 18 rather than someone who may go on to be 80."

      I respond:
      I disagree with your interpretation, Andrew. Anonymous added "a parent of a healthy intelligent child" to that statement which draws attention to the fact of what was meant is a child without cognitive impairment.

      Healthy children do not need transplants. Transplant recipients are not guaranteed to live to 80. No one is! The actual lifespan for individuals who have WHS is unknown, although there are several individuals who have WHS who are in their 20–40s. Can Anonymous say with certainty that other Kidney transplant recipients have a better prognosis?

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    4. "I believe that it is not anyone's place to tell whoever this is or anyone else what they are 'morally obligated to do...'"

      Seriously? Tell it to Dr. King. Tell it to Jesus. Tell it to Moses. Tell it to the prophets. Tell it to anyone else who has told people what they are "morally obligated" to do when life and justice were at stake. They'll tell you the consequences of silence. They all saw it with their own eyes.

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  6. Why does the doctor being Peruvian or brown matter at all? That's what I was getting at there - bringing that up adds nothing to the story and suggests deeper issues.

    It reminds me of awhile back when the coach of the Denver Nuggets called a drunken fan a "Mexican piece of sh**" and effectively lost his job over it. He was clearly angry, much as this author was, and in this kind of context ethnic terms are generally negative. Not absolute proof, but a huge red flag in my view.

    Also, I'll try to sum up my point re: transplants a little better. The mean life expectancy of individuals with Amelia's condition is 34. I will admit I do not know the equivalent number for transplant recipients without any significant disabilities, but I figure it would be significantly higher; if I am in error, please correct me! Anyway, generally speaking you would likely generate more overall happiness by giving transplants to those who would enjoy the benefits for the longest amount of time. I understand that there are specifics that could change this (heck, I've been a caretaker for someone with Down's Syndrome and consider him a dear friend), but larger organizations often aren't in the position to know those or trust the people making those arguments.

    To get closer to the heart of the matter: "Sanctity of all human life" would be a nice sentiment if everyone could get the treatment they need, but we don't live in Candyland. In the real world somebody has to get screwed, so you have to decide priorities based on who would benefit the most.

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  7. We can't predict who will do what with his/her life. That doctor was playing God, pure and simple. Doctors should inform their patients of the facts of the situation, but THEN, they should do the procedure they are assigned to. This is indeed real life, so instead of trying to decide who "should" live or die with our flawed, limited, and sometimes highly prejudiced human judgment, we should all just stick to what we know - in parents' case, getting their child treatment, and in doctors' case, applying the treatment needed.

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  8. Thank you for your post. I also think that all persons are the same worthfull, so everybody should have the same change to get a transplant, or medication or something similar.
    Sorry, the following thoughts might be pessimistic: At the same time as I'm thinking this, and I 100% think that this girl should get her transplant, no doubts, I can't think/feel that I am the same worth. I have problems to get medication form doctors (ofcourse this is not so extrem, because I'm not dying) probably because I'm not good (or quite bad) at speaking to them/explaining and they don't do anything to make it easier (e.g. a 3 Min. appointment is not enough to start speaking for me, e.g. if I'm not ask specific questions I don't know what I should tell). But it has come to the point where I think/feel that I'm not worth this (I also had this feelings before, but not regarding the medication). I don't know. Plus I don't know if life is worth living for me... I just don't know, I'm not saying its not, but I doubt.
    Of course all this has nothing to do with this child who needs the transplant. Well a bit... But I totally (100%) think that everybody (despite me) is worth the same. And I get the unlogic in this, but this is what I think. I know this is a bit strange.
    Do you know how this ended? Did she get the transplant?

    (Sorry for mistakes, I don't have so much time at the moment.)

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