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.