Saturday, January 14, 2012

Let's Talk Some More - Part 2

Defendants, Nuremberg War Crimes Tribunal, 1945

1. Whatever proportions these crimes finally assumed, it became evident to all who investigated them that they had started from small beginnings. The beginnings at first were merely a subtle shift in emphasis in the basic attitude of the physicians. It started with the acceptance of the attitude, basic in the euthanasia movement, that there is such a thing as life not worthy to be lived. This attitude in its early stages concerned itself merely with the severely and chronically sick. Gradually the sphere of those to be included in this category was enlarged to encompass the socially unproductive, the ideologically unwanted and finally all non-Germans. But it is important to realize that the infinitely small wedge-in lever from which that entire trend of mind received its impetus was the attitude toward the nonrehabilitable sick.

-- Leo Alexander, American psychiatrist, neurologist and key medical advisor at The Nuremberg Trials. Dr. Alexander wrote part of the Nuremberg Code which provides legal and ethical principles for scientific experiments on humans.

2. Ontology, the study of the
being, holds that life is a supreme good that cannot be
measured and consequently cannot be graded. On the opposite,
health can be assessed and graded. Physicians are
constantly establishing whether the health of their patient
is improving or declining. However, the value of human life
cannot be measured, and is not determined by the quality
of an individual’s life at a particular time point (23).

-- from a paper titled Transplantation and Mental Retardation: What is the Meaning of a Discrimination

3. UN Convention on the Rights of Persons with Disabilities: Article 25 - Health: States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. Article 10- Right to Life: States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

United Nations' Convention on the Rights of Persons with Disabilities, 2007

If you're interested in helping out Amelia, sign the petition at HERE.

Let's Talk - Part One


  1. i signed the petition. and thank you, elizabeth, for answering my questions re the law. that first quote from the nuremburg trials is just chilling.

  2. You are amazing. These three examples are so succinct and perfect for this situation. I am heading right over to sign the petition.

    What a champion you are! Go thank yourself with a good cup of coffee (or tea) and a half hour with a book and your feet up. Or something else that speaks to you.

  3. As always- you are focused in your fierce love. Damn, girl. You are a force for GOOD!

  4. P.S. I just signed the petition. This is all a little bit a part of what I was talking about this morning in my post. Well, some of what I was talking about. Not the oatmeal or Keith Richards part.
    Not to make light of things. But you know me.

  5. Elizabeth, this is chilling, nauseating and shocking. I simply HAD NO IDEA. None. Thank you for the link to the petition but surely there is more we can do? Do you know Amelia's family? Have they called CNN, The New York Times, the White House? This is ABSURD, and you are exactly right, it smacks of Nazism. It is Nazism.

  6. (Just to let you know, I'm not commenting much these days but I am reading, and I feel gratitude in being part of your community.)

  7. In regards to this particular case, I do agree with you. If the family can find a donor, I don't see what the problem is. It sounds like who ever was in charge of getting the mother the information about the transplant process dropped the ball. Whoever gave her the idea that they would not have to find a donor, was irresponsible but probably well intended.

    But for the information presented, it appears like she the parents were misled (it sounded like the initial news of her not being able to be chosen for a harvested organ from a donor dying an unnatural death)

    The way the approached the family was a lot like dropping a bomb. I could have been handled completely different.

    But the bottom line is, if my loved one needs surgery, I don't care if they are inept socially, I want the best surgeon.

    and the sad fact is that unless there happened to be tragic occurrence at an organ donor convention and a large numbers of donors died tragically all at once and a sudden influx organs flooded the wait list, the chances of her being choosen by the board as "next" may be very slim. But I don't what how the process currently is for that particular organ.

    And to be honest (although I only read that short article so I know I am missing a lot of facts) I don't think the child was discriminated against.

    Not until the find a donor, then if insurance denies the procedure, that is when I would say it is wrong.

  8. What those doctors did is wrong. Period. They have no right to judge anyone's quality of life. I feel angry - and scared. Your examples are chilling and so appropriate. Thank you, Elizabeth. I'm going over to sign the petition now.

  9. One of my favorite speeches from 1999:

    Of course, indifference can be tempting -- more than that, seductive. It is so much easier to look away from victims. It is so much easier to avoid such rude interruptions to our work, our dreams, our hopes. It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction.

    Elie Wiesel

    Yes, we all need to be behind the petition...we all need to do whatever is necessary to validate the worth of the life of every disabled child and adult.

  10. I signed it.

    I can't even find the words to describe how horrifying this is.

  11. "it is important to realize that the infinitely small wedge-in lever from which that entire trend of mind received its impetus was the attitude toward the nonrehabilitable sick."

    True, true words.

    My "developmentally disabled" sister lived a full life until she died from complications after surgery at 48 years-old.

    I am signing. Thanks for sharing your outrage with us.


  12. That's what humans do best, offer support, lend a voice, hold hands. Thank you.

  13. You go, girl! I'm going to sign right now.

  14. The problem is not that the children are "damaged". The problem is that the system is damaged. When those who where sworn primum non nocere begin to adopt the attitude that perfection demands action and everything else is disposable, we better begin by taking the attitude that they are sworn to the bottom line and to the arrogance that allows someone to say "I make the decision". And we are most certainly morally obligated to take action. Get that man's name out, there is no valid reason to protect by anonymity someone who has obviously such power as to decide over life and death without even knowing the pertinent issues in the matter. He perhaps took the Hypocritical oath and not the Hippocratic Oath? I am so angry I could spit nails just about now.

  15. Petition signed.
    A chilling story.
    What an arrogant doctor. Who knows what the future holds? And more specifically who knows what the future state of the art in kidney transplants will be.

  16. Will go sign now... been away from my blogs for a few days.
    Article below talks about this very issue w/ some not so surprising results...might be helpful to this family to find similar studies which I"m sure are out there...
    As always.. thx for keeping me aware.

  17. This makes me want to puke! I guess we haven't evolved much as human beings. I hope they are able to fight this and get treatment for their daughter.

  18. I am a long time lurker... first time commenter. I first want to say that I love your blog for a variety of reasons, but mostly because it offers insight into life with a disabled child. I am a social work student, and your blog has been more valuable than any textbook.

    I've written CHOP and signed the petition. Excerpt:
    I'm willing to give the benefit of the doubt that there could be actual factors that would prevent this sweet little girl from receiving a transplant. Even if that is the case, your hospital has handled this situation quite poorly. Those of us in mental health professions and studying to enter them are taught to NEVER refer to someone as mentally retarded. It is an offensive, outdated, and downright vulgar term that is loaded with negativity. I should hope that professionals would know better, but take the opportunity to educate those in your employ. As for denying the transplant, cognitive abilities should not even enter the question. I understand that you cannot discuss details of this child's medical history (nor should you), but there needs to be a change. There needs to be a reevaluation of ethics, a reevaluation of treatment of patients, and a concerted effort to place emphasis on the value of all people regardless of ability. Even if this child is medically unfit for transplant, the way she and her family were treated is appalling. Own the fact that a doctor and by proxy this institution have hurt this family. Own the fact that this was handled inappropriately. People are not going to be placated by carefully worded, empty PR statements.

    For me, the alarm bells went off as soon as Amelia was referred to as mentally retarded. Language reflects our attitudes, and clearly Amelia's life is not valued by this physician.

  19. Who: If you read the post carefully, you will see that this is not an issue of organ donation. The family HAS located a donor in the family. This appears to be a case of blatant discrimination.

    Kathryn: Thank you so much for de-lurking and leaving a comment. And thank you for adding your voice to the others -- your letter is thoughtful and cogent. As you continue your studies, know that sadly, nearly everyone in the disability world struggles with situations if not as severe, then nearly so. It's comforting to know that people like you are out there, working alongside us.

  20. I signed and also blogged. Thank you, Elizabeth.

  21. Just catching up - have signed.

    Heavy sigh.




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