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