Susan Senator is one of the most eloquent persuasive and knowledgeable voices out there right now on the subject of the realities of disability. She happened to pop up in my Facebook IM yesterday when I was struggling with this post about why I thought Amelia Rivera should not be put on the list to wait for a donated kidney. Susan argued with me, and asked to write what she believed in a separate post. She is right -- this is how the world SHOULD work. But it doesn't. Yet. Lisa Belkin, To Be Named By You Blog
It's the way of the world, people say. Limited resources. Bad laws. That's reality.
I guess I am not a realist. I believe that Amelia Rivera should get the kidney. Many will say I am not living in the real world. Okay, so welcome to my world. I am the mother of a deeply autistic young man, and so most of my adult life has been spent fighting the concept of That's the Way it Is, So Deal With It.
No, my child is not dying of kidney failure, thank God. But there is something in this debate over Amelia Rivera's worthiness of the kidney that feels familiar to me, and that is the idea that we have to live in the real world, with its harsh realities. In Amelia's case, the real world does not have enough kidneys, and so choices must be made. The choices are made based on odds of survival, quality of life after surgery, and perhaps even comparative to the others in need.
Yes, that is the reality: to think of the greater good. And yet, it also feels a bit like Social Darwinism, or even eugenics. Why does a team of doctors get to decide that Amelia is less deserving than someone else? Are doctors always right? History is full of mistakes in the medical profession. The story of the human race is one of trial and error. Evolution itself is trial and error. We all make mistakes because we are human. And that, perhaps, is what has me so upset over Amelia's doctors: the implication that some humans are better than others, when in fact, we are all a mess.
All of Nat's life I've been told to make him more like everyone else. Those who told me that were not completely wrong; I knew that Nat needed to learn as many skills as he possibly could so that he could eventually be as independent and productive an adult as possible. Nat's teachers and therapists spent years getting him to communicate, to deal with his overwhelming confusion and frustration with the world, to advocate for himself as best he could -- so that he could live a better life.
And yet at some point there are things I will not force on Nat in the name of getting to normal. I don't insist that he stops talking to himself. I don't make him stop flapping or walking in circuits endlessly around the house. If I did, I would be correcting him constantly, and what would that tell him, implicitly? That he is not good enough as he is.
Society is biased towards the mainstream, even with all the evidence that it is the oddballs, the aberrations, the mutations that give us our uniqueness, and help us progress as a species. And yet the mainstream, the normal, the cookie cutter: that is our standard, and all else needs work -- or worse. In Amelia Rivera's case, it seems that her body's problems don't even rate medical care. In a Saturday, January 14 blogpost from Notdeadyet.com, Disability Activist Stephen Drake points out that even Children's Hospital of Philadelphia's Patient Bill of Rights appears not to apply to Amelia: "Patients and Families have the right to: Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay."
Why doesn't this policy apply to Amelia, a three year old with a serious disability? Isn't this hypocrisy? Veiled in calculations of life expectancy and quality of life projections is the underlying fact that organs in America are scarce, and that therefore there has to be some way to choose who lives and who dies. But next to that very same fact is the way our society is taken for granted that disability equals inferior. No matter what we say, this is how we act, for the most part. We have the Americans with Disabilities Act, yet employers continue to deny work to the disabled. According to an August 2011 article in Forbes, "Americans with disabilities are experiencing a jobless rate more than 80 percent higher than the rest of Americans, who are currently at 9.2 percent." We have the Individuals with Disabilities Education Act, and yet we have to drag Congress and state legislatures kicking and screaming to get the funding for special education programs. We say we want all people to be equal, but do we act that way when it comes to disability?
I don't think we do. All of my son Nat's life he has gotten the message that he is not good as he is. He is forced to socialize, to speak, to look people in the eye, to endure sensory overloads we can only imagine, all in the name of helping him be more normal. It's the way of the world, we say, and sigh. But what I want to know is, if we don't like the way of the world, why aren't we doing something to improve it, rather than going along and reinforcing it with bad decisions? Shouldn't we instead be investigating not only organ scarcity but our current way of looking at disability? I hope that the doctors at CHOP rethink their point of view, because a nation is watching, waiting to find out what Amelia's kidney can tell us about our country's heart.
Lisa Belkin: Denying A Transplant To A 'Retarded' Child?
You are naive if you think that these decisions, straight and without letting our own personal situations and ethics (as you've clearly done) cloud our judgment. I'm glad you're not anywhere near there committees because we'd have a large number of the VERY LIMITED amount of organs available for donation going to waste. These are hard decisions to make and I have a lot more respect for those who do make them, then those who have the nerve to criticize them for it.
Really? Is equality really what you're after? So you would be satisfied with your child being dumped into a 30 person classroom and told to sink or swim? No, what you are looking for is special treatment for your child, and the state to pay for the much greater cost of raising a child with special needs. I am sorry that you don't like the world the way it is, and would prefer an ideal one, but at some point you have to grow up and deal with reality.
Please, let's refocus the discussion on the actual events.
Indeed, if rich parents, or politically influential parents would manage to take a kidney from a much more deserving, but poor individual... now that would be social Darwinism.
As for "evolution making mistakes"... that's just poor thinking. Evolution is a process, not a person. Processes do not make mistakes, only people do.
This shows, again, that when emotions are involved, all logical thinking skills, even the most basic ones, are going out the window.
Y'know, it really doesn't. Approaching this dispassionately and realistically has nothing to do with social Darwinism, and isn't near the same ballpark as eugenics. When you're lobbing incendiary bombs like these, there is a responsibility to be accurate:
eugenics: noun ( used with a singular verb )
the study of or belief in the possibility of improving the qualities of the human species or a human population, especially by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits
"Why does a team of doctors get to decide that Amelia is less deserving than someone else? "
What would you like to do -- submit it to a vote? Is a popularity contest the best way to logically and without emotion determine how the very limited number of organs be distributed? A team of doctors gets to decide because they are the very best -- probably the only -- group adequately prepared to make this determination based on years of study, and all anecdotal and empirical evidence available. Everyone thinks their kid should be put on the top of the list when something like this happens. Allowing people without an emotional stake or vested interest in the outcome is the only acceptable process.
That seems to be the trend in all of the "against it" posts I read regarding this case. If the party isn't going to live a substantially longer life, then they don't deserve the physical relief that the transplant would provide, much less the time that it actually would add.
I submit that there are a good many jackasses who live long lives and don't add a lot of quality or value to the world. Number of years survived on this planet is not a good way of establishing what comprises a good life.
Give kidneys to those who yell the loudest?
...who pay the most?
...who are first in line, regardless of any other factor?
...by throwing darts?
Go on...come up with a solution.