Non-person humans and non-human persons

I've been comfortably curled up under a rock, engrossed in Izzy's transition into the school system and all the meetings, assessments, evaluations, administration and such that it involves, while pretending that the world ends at the borders of sunny Orange county and it is not full of closet-eugenists and other humanoids who think that people with disabilities are God's punishment to women , that there are no doctors who would refuse to perform a kidney transplant on a child due to her cognitive disability and that there are no Huffpost-commenters who believe that people with a significant cognitive disability shouldn't even qualify for personhood but instead have the status of a "nonperson human."

But then last Friday, my dear friend Elizabeth sent me a link to this blogpost in which Chrissy Rivera recounts how she and her husband were told by the transplant team of Children's Hospital of Philadelphia that their 3-year old daughter, Amelia, was not eligible for a kidney transplant solely based on her "mental retardation", even though the family was planning on donating the kidney and was not looking to get on the waiting list and thus compete with not-mentaly-retarded 3-year olds. I was going to write about this story on my blog on Friday, but I was too enraged to come up with a balanced commentary and I was afraid I would end up with a diatribe. So instead, I just posted it on my Facebook page, e-mailed it to some people, signed the petition, ranted to Phil, had him sign the petition, ranted to Phil some more and waited for my anger to subside. I was still waiting when I read this comment posted on Elizabeth's blog, a comment that was originally posted at Huffpost, a site I was intentionally avoiding in hopes of staying under my rock a little longer.


The comment contained some controversial statements about Amealia Rivera's case and about people living with disabilities in general. While this commenter agreed that the Rivera family should be allowed to donate their own kidney to Amelia, she questioned whether it would be in the little girl's best interest "as far as quality of life and being able to understand what and why the procedure is being done to her." In any discussion about disability, the question of "quality of life" comes up sooner or later, so it's not surprising that our commenter also brought up this wild-card argument while expressing her concern 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".


Apparently, our commenter assumed that Amelia's quality of life is poor due to her cognitive disability, so poor that a kidney transplant would make it worse than death, thus letting her die would be the kind thing to do. If the sole source of your knowledge and understanding about disability comes from Hollywood production like "Whose life is it anyway" or "Million Dollar Baby", in which disability is portrayed as a fate worse than death, I can see why you automatically assume that every person with a disability has a poor quality of life and why you think that they would rather die than endure such a fate. However, if you know an non-fictional character with a disability or you read the writings of disability advocates such as William Peace at Bad Cripple or Dave Hingsburger at Rolling Around In My Head, you probably know that there are a host of happy, well-adjusted, accomplished individuals living with a disability, whose quality of life is just fine thank you very much and who don't spend their days looking for someone to euthanize them. As a mother of a severely disabled child, let me also hereby reassure you that children with disabilities also can have a full, happy life and having an intellectual disability doesn't actually hurt or cause suffering, it's the reactions and attitudes of society towards it that is painful.


Like the attitude that our commenter demonstrates by stating that she would be heartbroken if she found out that someone with a disabling condition had received a lung transplant while her friend's 13-year old daughter had passed away while waiting for a donor. In other words, the life of her friend's daughter was more valuable and more worth to save than the life of someone with a disability, cognitive impairment or a degenerative condition. Designating different values to different people's life based on their physical fitness, mental capacity, or medical condition, comes dangerously close to eugenics, social Darwinism and Action T4 (the Nazi's eugenics-based so-called "euthanasia" program). "Lebensunwertes Leben" or "life unworthy of life" was the Nazi designation for the segment of the population that, according to their judgement, had no right to live, due to a disability, medical condition or racial background.


What also comes dangerously close to eugenics, social Darwinism and Action T4 is the distinction our commenter makes between "human" and "person" and her usage of the term "nonperson human" as in "persons have more of a right to an organ transplant than do non-person humans". She presents this distinction between "persons" and "non-person humans" not as a debatable philosophical construct but as a widely accepted scientific fact, as if she was discussing the difference between the clades of lizards and snakes. While I can see the urge to define "personhood" in a world where new bioethical questions emerge with the advances of medicine and biological research, designating a 'non-person' status to a human being is an extremely dangerous slippery slope which opens up all kinds of possibilities for violation of human rights. Any time in history, when the designation "person" was separated from "human" and it was not enough to be a human being to qualify for being a person, unspeakable horrors took place, like the Holocaust, slavery, and genocide.


During our Christmas break, since we are such a crazy fun bunch, we watched the BBC documentary series: 'The Nazis, A Warning from History'. This excellent production doesn't only chronicles the rise and fall of the Third Reich, but also explores the why's and how's, trying to find out how a cultured European nation in the 20th century could help Hitler rise to power and be responsible for the heinous acts that took place in Nazi Germany. The documentary contains an impressive amount of interviews with a wide variety of people who personally experienced the events of the Hitler-era. The interviewees ranged from plain civilians through regular soldiers to high rank officials in the Nazi Party and the Wehrmacht. I don't know which one was more shocking to see: how unrepentant and unemotional some of them were as they recounted some of the most horrendous events in history or how average and non-monsterous others were. They weren't soulless psychopathic Charles Manson like figures reeking of evil. One of the lessons to take away from this documentary as "a warning from history" is that Hitler and the Nazi Party didn't rise to power in a historical and cultural vacuum and the horrendous deeds were not committed by a handful of people alone. Rather, the Nazis' rise into power was helped by political, historical, economical, and cultural factors and their atrocities were made possible by masses of regular people who subscribed to the widely accepted philosophical ideas of their time. Also, the Holocaust didn't start with the gas chambers, it started with concepts, ideology, philosophical constructs that are not so different from the beliefs that many people hold today regarding the value of human life, the survival of the fittest and disability.