Tuesday, January 17, 2012

Here's a big old door, some shit and a fly

Dutch art nouveau drawing, 1901

I've been making comments over at Huffpost in response to a recent article about the child who was denied a kidney transplant based on "mental retardation." You can read more about that here on my blog, but I won't post a link to the Huffpost chain because it's so maddening, and I don't feel like going over there and getting any more involved.

What I do want to show you, though, is one person's reply to one of my comments.

Her comment:

Assuming the family can cover the costs and are a match, yes they should be allowed to donate to their daughter, although I'm not convinced that it would be in her best interest as far as quality of life and being able to understand what and why the procedure is being done to her.  It's possible she may be put through more suffering, not less by being given a transplant

As far as the broader discussion about rules relating to transplant recipient registries

­, I couldn't agree with you more.  It's not first come, first serve; in a world with a shortage of organs, comparativ
­e health and quality of life must be taken into considerat­ion, and that does include mental capacity.  One of my very dear friends lost her 13-year-ol­d daughter, while she was awaiting a double lung transplant.  Frankly, I would be heartbroke­n if I were to learn that lungs Jena could have received were given to someone with significan­tly less of an ability to live life or with a degenerati­ve condition like this.
My response (because I'm like a fly drawn to shit):

Your comments are exactly the reason why families with children with special healthcare needs often despair and grow angry. I would urge you to read some of the material written by those who do have children with disabiliti

­es and by adults who are disabled. You need to educate yourself about issues like "quality of life" and "an ability to live life" before you make such statements
­. Robert Rummel Hudson's article "Quality" would be a good place to start.http://sup­portforspe­cialneeds.­com/2012/0­1/16/quali­ty/ 
Her reply:

My goodness, when I say "quality of life," I'm not referencin

­g the ability to ice skate or not, or even the ability to hold down a job, let alone something as trivial as looks, as is referenced in first link you shared (which incorrectl
­y lists Amelia's age, by the way).  That's one slippery slope argument that is just downright silly.
When I'm referencin

­g quality of life, I'm talking about the individual
­'s overall well-being as a function of pain and symptom management­, spiritual, social, psychologi­cal, and emotional well being.  It is very possible that receiving a transplant could further diminish Amelia's quality and even length of life.  Sometimes the kindest thing is doing nothing at all, as people often chose to do for terminally ill family members
Further, there is a distinct difference between a "human" and a "person," a distinctio

­n which may or may not be relevant here, but certainly is relevant in discussion of the right of significan
­tly mentally disabled or incapacita­ted humans (like those in commas) to receive care, and the moral duty of others to provide it.  Philosophe­r Mary Anne Warren provides one of the most cited criteria for personhood­, or humanity in the moral sense:
1.  Consciousn
­ess (of objects and events external and/or internal to the being), and in particular the capacity to feel pain;
2. Reasoning (the developed capacity to solve new and relatively complex problems);
3.  Self-motiv

­ated activity (activity which is relatively independen
­t of either genetic or direct external control);4. The capacity to communicat
­e, by whatever means, messages of an indefinite variety of types, that is, not just with an indefinite number of possible contents, but on indefinite
­ly many possible topics;5. The presence of self-conce
­pts, and self-aware
­ness, either individual or racial, or both. source These traits combined comprises a "full" person, but Warren doesn't believe that all attributes must be present to consider someone a person in some sense.  "(1) and (2) alone may well be sufficient for personhood­," she claims, and neither does she insist that any one of the criteria is necessary, although she seems to believe that reasoning is both a necessary and sufficient condition for personhood­.
If we had infinite organs and resources to provide transplant

­s for those organs, then yes all human should have them.  However, we don't live in that world, and that does mean that persons have more of a right to an organ transplant than do non-person humans.

My goodness, did you hear the sound of that door, slamming? I'm looking through the peephole, now. Is that you, Single Dad? Help! Is that you Lisa? Help! Is that you, Claire? Help!


  1. Excuse me for one moment while I go take care of my "human" 4 year old who needs to be fed, at which time I might just puke up my own lunch.

    I am no match for this but those you listed, certainly are.

    This just gets uglier and uglier, doesn't it?

  2. My first response was, of course, FUCK HER, but I realize that doesn't move the dialogue along. So, I will repeat what I said in response to her, which was: Non-person humans? I suspect most of the people you perceive as "non-human" have more humanity than you will ever possess. Ok, maybe that doesn't move the dialogue along either??

  3. Oh and I don't dare click on her blog or whatever that weblink with her name on it is. Whatever it is, I know enough about her world view that she doesn't need to be part of mine.

  4. I understand what you mean Elizabeth, completely, but I feel the only places she got out of line, is the wording which I read to mean insurance shouldn’t pay for it and the line about being upset if Jena got the transplant without adding “and they both met the standard requirements through test results which predict whether or not their body can be fooled into not rejecting the organ AND they lived in the same city” Because humans are emotional and even if she knew in her heart that another child should get the organ, I doubt she could not still experiences strong feelings of resentment.

    Because I don’t believe that this women has anything against disabled people (physically or developmentally) It is hard not to take her viewpoint personally, but it would be wrong to do so as far as I believe. We have to be careful with what we let hit nerves, because unless you are discussing two children whose blood and immune systems will accept the organ, AND the children reside in the same town, the very thoughts that may be solely responsible for hitting a nerve in a bad way is not even a real situation, nor could it ever turn into one (at least not in regards to the main point of contention)

    But you know, countries have gone to war over hypothetical situations that resulted from nothing more than pissing contests between males, following by fragile egos of persons who were to an overwhelming degree too much of a great big pussy, to face their peers after being so arrogant only later to find they were in the wrong.

  5. WOW.. and that's all I can say... good job trying w/ that one.. She does seem quite sure of herself. Almost as cocky as the doc from CHOP.

  6. My good god, is that how you measure quality of life or life worth living...on a 5 point scale? When can people just believe that all life is equal, that ALL lives are worth living no matter the complexity of the disability. Sorry, I would have taken this woman's response personally and have gone for the jugular. Unbelievable...let's parcel out the goods to the fittest so they can survive...have we not passed the neanderthal era and Darwin's belief in the survival of the fittest to maintain genetic lines? I assumed, wrongly, that human consciously had evolved to a higher level.

  7. http://philadelphia.cbslocal.com/2012/01/16/childrens-hospital-denies-withholding-kidney-transplant-for-disabled-girl/

    Did you see that CHOP has agreed to meet w/ this mom again after all the bad PR?
    Sounds like its been a very effective campaign.

  8. "non-person humans." Well, why don't we just line them up and stick them all in a gas chamber? THAT would make life easier for all of the "persons" who apparently have more right to live. My own life is pretty pitiful, from the standpoint of quality, let alone contribution to the world. But I still would chose to live and be loved and experience the life that is given me. I guess by this woman's definition I ought to be gassed, too. Completely disgusting.

  9. Hello, Elizabeth. I mostly am a silent reader but I feel a need to comment on that. So I have been sitting here for many minutes now, waiting for words.

    This is not the first time I've encountered that kind of thinking, but I will ever get accustomed to it. It's not just "wrong" or "scary" or "disgusting". There are no words. Single Dad did put it well - it just makes my blood boil.

    It also made me go and listen to a CD I haven't listened to for years. Dark Side of the Moon by Pink Floyd. Not because it's particularly relevant, but because when you are a high school kid here in Central Europe, you take a field trip to Auschwitz-Birkenau.

    Can you imagine a bus full of 17-year-olds, none of them saying one word during the 5-hour ride back. Then, just like now, there were no words. Black pudding. The teacher didn't even attempt to make us discuss.

    I couldn't stand that silence, so I just pretended to be listening to music. I happened to only have Dark Side of the Moon on my mp3 player so I listened to that for those 5 hours. It drilled into my head so that now I can't listen to Pink Floyd without thinking about death camps. And it is the voice of David Gilmour that alerts me when something stinks of them. And trust me, this does.

  10. There's something inherently creepy about defining a person vs. a human according to some clinical scale, and using it to define who's eligible for certain procedures and who's not. That's really just eugenics.

    I think this woman is trying, and I like the fact that her tone is reasonable, and she's clearly really thinking about this issue. But if, as a society, we value the rights of the disabled at all, how can we deny a potentially lifesaving procedure solely because of a disability?

  11. did she really say "non-person human"?

    oh elizabeth, this shatters my ability to comprehend and breaks my heart into a million pieces.

    and what galls me most of all? She is so fucking sure she is right!

    wv: achies

  12. I was shocked that a CHOP surgeon said what he did to the couple, if that is indeed true. I have known any number of children who have had other health issues, a low probability of extending their life much for more than a year or so, a high risk of not surviving a procedure , and, yes, were disabled cognitively, and still were given the same radical medical treatments as the ideal patient for a procedure. It certainly has not been CHOP's operating philosophy.

    Doctors and hospitals may have certain criteria in line before going on with certain very difficult, life threatening procedures when ANYONE's medical condition is such that survival is limited and the side effects of the procedures are likely to leave certain patients worse than before. But these things need to be applied across the board. As far as I am concerned, Amelia had every right to be put on the transplant list regardless of her cognitive abilities. If a transplant is not indicated for her due to a great chance of making things more difficult for her and not increasing her life span, that is a whole other issue. But her mental disabilities should not enter the picture at all. It's not as though the transplant list is triaged by IQ.

  13. I keep trying to comment and keep losing my connection. Hmmm. Maybe I need to think about what I'm going to say.

    First of all, I made a crack about punctuation jail. I never keep my child in a comma.
    And I have no right to make that crack because I am the world's wort proofreader.

    More importantly, though, She is an uninformed woman who cannot be swayed and you should avoid her. She is naive and opinionated and that is a dangerous combination. GOd help her if her child (present or future) develop a disability. Because that's the only way she's going to get it.

    I do suggest you read this http://chronicle.com/article/A-Life-Beyond-Reason/125242/ It is an excellent scholarly article on the same subject matter. I know the author - or actually I know his wife. They have a disabled son and he writes about this "Life Beyond Reason" and it's really lovely.

  14. Note that as Elizabeth says, the woman is a 26 year-old La Leche League Leader whose "favorite form of punctuation is the semi-colon." So we have militant and shallow. Oy. She proclaims "I am passionate about natural/attachment parenting ... about striving to match reality to the dream ..."

    I would write more about her or her point of view but I try not to attack the weak or infirm, of body or mind (well, there is one exception, but he is the soon to be ex of one of our own ...).

    She is not worth our time. But since she likes the semicolon so much ...

    I read your response on the blog; small minds never fail to amaze me.

  15. "And it is the voice of David Gilmour that alerts me when something stinks of them. And trust me, this does."

    Linda, prophet-like and entangling Pink Floyd and Auschwitz-Birkenau forever in my mind. Well - well! - put, Linda.

    Most ominous is the brazen, shameless, unexamined entitlement Ms. Amber-Hinds exposes in pronouncing sentence on the worths and worth-nots. I'm pretty sure they would have been pleased to give her a job at Auschwitz-Birkenau, right where the train cars dropped their latest victims.

    Thought of this: "Updike once referred to many of his critics as harshly dismissive and blithely inaccurate."

    Agreed, this imperious woman is not worth your time. However: I am still glad you do battle. The choices we make, to speak or not to speak, matter.

    You know this very well.

    Speak on,

    Cathy in Missouri

  16. As someone with a degree in philosophy (with an emphasis in medical ethics, no less), I cannot imagine ever using the phrase "non-person human." Ever.

    And I am also struck by the notion that the ability to communicate also relies on the ability of others to listen and try to understand. The video that has been making the rounds of FB and YouTube about the autistic girl who displayed an amazing intellect nobody suspected until she was given a computer and a means to express herself comes to mind. I suspect that for many many years individuals such as this little girl were branded similarly to 'non-person humans' without any foundation other than the fact that other individuals were unable or unwilling to try and decipher their communications.

    On a positive note, I noticed a video on MSNBC.com regarding Amelia's transplant fight with CHOP. Progress is being made by those who are willing to raise their voices. Thank you for being one of those people, Elizabeth!

  17. what? Oh my gosh Elizabeth, I love that you keep writing and talking and telling the truth. This is insanity. I was shocked to believe this sort of thing is being debated. I'm so isolated. I think you are the queen.

  18. Am. Aghast.

    "Non-person human."


  19. "Frankly, I would be heartbroke­n if I were to learn that lungs Jena could have received were given to someone with significan­tly less of an ability to live life or with a degenerati­ve condition like this." Wow...shallow is right. You know, we were asked to give up Sophie's organs on the night they pronounced her brain dead. It never crossed my mind for a minute that I would be disappointed about who received her precious organs...just that there might be something good come from her untimely death. She is, quite simply, a very foolish woman.

  20. A human life can only be measured in terms of love.

    This controversy stuns me into silence.

  21. I haven't read the thread on Huffington post so I might not have the whole context, but when I read this comment about the "distinct difference between 'human' and 'person' and 'non-person humans', I couldn't help but think of Action T4 (the Nazi's eugenics-based "euthanasia" program) and all the genocide, mass-murder, slavery and violation of human rights that has been committed throughout history based on this very notion, that some people don't qualify for personhood and humanity and their lives are less valuable than others. "Lebensunwertes Leben" ("life unworthy of life") was the designation that the Nazis used for the segment of the population that was deemed to have no right to live - due to their disability, medical problems or racial backgrounds.

    I'm not calling this commenter a Nazi by any means, I just want to point out how dangerous it is and where it can lead when we go down on this ideological pathway. The gas chambers were the implementation of eugenics and social darwinism, taken to the extreme.

    While I can see the need for defining personhood when it comes to bioethics and deciding on questions such as abortion, euthanasia and other issues that come with advanced medicine, designating a 'non-person' status to a human being is an extremely dangerous slippery slope and opens up all kinds of possibilities for violation of human rights.

    On a different note, this commenter really shouldn't pass judgement on someone else's quality of life, especially not on the quality of a disabled person's life, as it seems to me that she is only familiar with this population on a conceptual level. If she had ever really known or loved someone with a disability, she would never use the term 'non-person human' or even bring up this notion in relation to this little girl and her kidney transplant case.

  22. There's a wonderful line from "Cat on a Hot Tin Roof", when Maggie the Cat turns to Brick and says "I'm sorry. I could never keep my fingers off a sore." Which I've always STRONGLY identified with, and I think it applies to you as well!

    That said, I'm afraid I had to skip through long passages of what that commenter said because it upset me too much.

  23. I am stunned and sickened by her words and, at the same time, grateful for your voice and strength.

  24. non person human - I feel sick, I really do. And all those comments on Huffpost, these people should step out from behind their bullshit arguments, severe disabilities especially intellectual disability makes them feel uncomfortable, plain and simple. "life unworthy of life" is now phrased life not worth living, or "better off dead". I think the original article showed that in the way it was written.

    I realise that people find it hard to understand how it is possible to have a "meaningful" relationship with someone with severe intellectual disability, one of the things that scared the crap out of me when Dimitri was younger was how our relationship would be when he is older, but if we asked the question do/did you have a meaningful relationship with your typical 6month old, or was she/he a non person to you? they might grasp the idea a little more.

    (I think Singer considers babies non persons, but he's an ass)

  25. I echo everybody else's reactions, that this is such an upsetting conversation.

    And I guess I also want to thank you for being part of this conversation with Amber Hinds, because she's NOT an awful human being. She's voicing beliefs here that are fairly common, particularly among people who don't have a personal relationship with someone with a disability. Honestly, I suspect an argument like this might have been made by some of my colleagues in their pre-Maybelle lives. I suspect that knowing and loving Maybelle has broadened people's worlds in very useful ways.

    So as I read Hinds' words, I'm feeling sick, but I'm also feeling like those of us who disagree have to--to the extent we are able, with our own self-care as top priority--engage with her and folks like her. There are lots of folks in the world who ignorantly believe those sorts of things.

  26. I am a registered organ donor. If I die, then any viable tissues and organs will be harvested and given to those who desperately need them. I would never in a million years be disappointed to see my organs go to a child like Amelia. Different does not mean less than.

    I've been following the story on CHOP's Facebook page, and I've made a few polite posts. There are some people there with the same attitudes espoused by this woman. I had one woman tell me to be careful about what I posted since I was so clearly judgmental. I fond that funny considering I took a lot of time and effort to make anything I wrote polite and devoid of choice words. I had to disengage after she said social media had not helped this family. Yes, because keeping silent would have been SO much better.

    I think many people are uncomfortable with the idea that an institution that has done so much for so many has also been discriminatory. There is a knee jerk, this can't be true! reaction. The sad reality is that we know institutions, even the most wonderful ones can commit atrocities. Look at the Catholic Church. Look at Penn State. And of course, this is why institutions can get away with things like this. If no one wants to believe the allegations, if no one wants to stand up and say that this is wrong, wrong, wrong then nothing gets done.

  27. I think Amelia will get her kidney transplant. It's all of the other Amelias whose parents did not get publicity for their children's plights that make me sad. I'm glad that this doctor said what he did, because it does bring the issue to the forefront, and maybe make other doctors think first.

    However, who wants a doctor operating on their children who does not feel such children should live or get the very surgeries or treatments, that s/he is giving? I sure as heck don't. It makes for a good screening tool when these guys make their sentiments known.

    I've had a lot of trouble with foreign doctors, teachers and others who are in a position of authority and from countries where such positions are sacrosanct, and I 've had to put them in their places

    I also want to reemphasize that I have sadly had to deal with CHOP< and have never seen them deny children treatment who are disabled or have a short life expectation. I have felt that they have been overly treatment happy at times, a stance that peer parents have also sensed, when the treatment has so much pain and suffering and complication for so little improvement.

  28. A non-person human? WTF?

    It's hard for me to read that and think straight, it's so upsetting.

  29. Sadly this woman is in my estimation a good indication of what most people think who have never been touched by disability. The bias against those with cognitive disabilities is astounding to me. What I experience as a man with a disability pales in comparison to what those with cognitive disabilities face. I once had a professorial colleague complain to me that the campus was "over run" by students with learning disabilities and accommodations were an imposition on his time. I replied I bet he does not like all the ramps and elevators too. He said, "Oh, that's different. You have a physical disability". Ugh

  30. I actually feel sick reading this. I am speechless. And angry. There are no words for "humans" like this woman.

  31. I watched a movie the other night with Natlie Portman and Lisa Kudrow called The Other Woman.

    Portman's character has an affair with Kudrow's husband, and becomes pregnant. The affair leads to a divorce and a new marriage, the baby is born, then the baby dies of SIDS 3 days later.

    In one of the scenes the 8 yo son from the first marriage says to his step-mom, "Did you know that your baby wasn't a person? My mom says that accd to Jewish law you're not a person until you're eight days old." He's actually trying to make her feel better, but he's somewhat socially awkward (reminded me a little of Asperger's).

    Thanks for stepping up to the plate and letting a lot of people know "our" side of the story, Elizabeth. It's good to have these conversations.(Portman's character, btw, told her step-son that the baby was as much a person as him. I loved the movie. Very well done.)

  32. If you see yourselves in others, then whom can you harm? HHDL

    Whenever I come across a less than sensitive comment or opinion this quote comes to mind. Because that is the difference isn't it? Between most of us, and this woman commenting on non-human persons or non-person humans or whatever it was she is espousing. If she could see her child in Amelia, or see herself in Amelia's parents, there would be no discussion needed.

    So, I will try to see myself in her. Try to remember all the times my opinions have been wrong-headed or less than sensitive because of my own ignorance. And I think I'll just go make myself a cup of tea ...

  33. So according to this commentor's criteria for "humans" vs. "people", since babies have no rational thought, they aren't people either. I guess we can stop transplanting infants then, too. Kidneys for all the Chosen Ones, huzzah!

  34. She doesn't get it. She won't get it until she gets it, which may be never. But the argument is worth having because if she's ONE person talking this way, you know there are many behind her sitting in silence but sharing her point of view. And I thank you for taking such an intelligent and articulate stand on behalf of humanity (where I say she's living on the fringe).

  35. I am usually more of a reader than a commentor, but I just was so annoyed at her comments, I just had to give my thoughts on her blog, after Heather's comments. She didn't post it, no surprise. Here's what I wrote:

    You are very young and very naive. Please have some self-awareness and acknowledge that you are only 25 years old, have one young child, are only recently married (I assume), recently out of college and have a very small amount of career experience. While your youth certainly doesn’t preclude you from having a valuable opinion, I would suggest you do a better job of keeping your tone of intellectual reasoning in check and consider the situation that you have chosen to debate with more respect and maturity.
    As you know, the article that you refer to was written in 1973 specifically as an argument in support of abortion (“On the Moral and Legal Status of Abortion”). The article is very controversial, especially the 1982 postscript on Infanticide (in which she contends that infanticide is not murder, but is wrong or immoral, although not in all circumstances), which many critics maintain further weakens her original position. There are innumerous historical examples out there of other speeches, essays and scholarly articles, that are similarly controversial and that have many critics. Trying to introduce an academic philosophy publication to give legitimacy to your opinion, into a discussion on the Huffington Post blog is misguided and immature. I have a degree from a well-respected university (with a focus on literature, women’s studies, and education, though I graduated many more years ago than you) and certainly enjoy invigorating ethical discussions, but using an academic article on abortion in the very real context of anguished parents fighting for their daughter’s life and individual rights, on a blog where there are many parents of special needs or medically fragile children, is just downright insensitive and ridiculous.
    Although I disagree with Warren’s article as a whole and feel that several of her specific arguments are very flawed, it is nonetheless a complex position that warrants more in-depth discussion than HuffPost, Facebook, or your little personal blog can accommodate. So to introduce the concept of criteria that determines whether someone is “human” or a “person” in this context is nothing short of inflammatory. In “real-life” discussions and situations, saying that a human being is not a “person”, regardless of their physical or mental state (and keep in mind that at one time, race and gender may have factored in as well), is unconscionable.
    And on a personal note, as a mother of a very loving, beautiful, and very valued special needs child, I hope that you are never fortunate enough to have or have the ability to impact a child, or another person for that matter, who does not meet your adopted criteria for personhood. Or at least hope you have developed a more nuanced, sensitive and mature perspective by then.

  36. Our Family...Bravo! Beautifully said. You are very kind also to this young "person".

  37. I like Single Dad's comments. Just for fun, I'll call attention to another of her quotes: "My favorite TV show was Big Love (can I get a sister wife?)". Oh poo - this isn't nearly as amusing knowing she's probably not listening. Feeble-minded is right. I hope she never needs a lung or a kidney from someone who thinks just like her.

    Jennifer @ johannesen.ca/yesorno

  38. Heil, mein Führer lady! I believe you're ice skating down a slippery slope here. Be careful or you might fall on your personhood.

  39. It just boggles my mind. All of it. Much of life does, so there is that.



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