Susan Senator
All happy families are not alike...
All happy families are not alike...
It’s the harsh reality of the Coronavirus world. Limited resources. Tough decisions.
I guess I am not a realist; I suppose I don’t live 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 for his validity. Pushing the world to see him as worthy of acceptance and inclusion—and support.
And as each state struggles to create new guidelines of who is more deserving of a ventilator, I’m getting a real feeling of déjà vu. Our country has been down this road before. An article published in 2008 in the National Institute of Health discusses the eugenics movement of the early 20th century, which “ultimately contributed to the intellectual underpinnings of state-sponsored discrimination, forced sterilization, and genocide.”
Unfortunately we may still be inadvertently operating in the same evil, wrongheaded mindset. One recent oped in the Washington Post points to Alabama’s policy to “not offer mechanical ventilator support for patients” with such conditions as “severe or profound mental retardation,” “moderate to severe dementia” and “severe traumatic brain injury.” These issues are being considered in Blue states as well. An April 8, 2020 Boston Globe article reported that “In Massachusetts and across the country, advocates for people with disabilities are concerned that those with mental or physical limitations will be excluded from life-saving medical care. Eighteen organizations have written Governor Charlie Baker urging him to develop statewide guidelines to prevent discrimination if rationing becomes necessary.”
But how will these guidelines and decisions be made, in reality? The Globe article describes the decision-making team as “a small number of physicians and bioethicists from hospitals across Massachusetts.” Is that group sufficient and inclusive enough for such dire questions? Who we bring to the table is just as important as what questions we are asking.
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?
Who are we allowing to decide and define “greater good?” I have a deep and abiding regard for doctors who are on the frontline of this terrible health crisis, but even their breadth of experience and perspective alone are not enough for such a critical policy. 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 if we base our life-or-death decisions on the belief that some humans are better than others, by virtue of their age or ability, we are creating irrevocable untold damage to the human race.
Society is undoubtedly 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 de facto standard. Eight years ago there was the famous controversy over Amelia, a three year old from Pennsylvania who needed a kidney, and who had Wolf-Hirschhorn syndrome. Children’s Hospital of Philadelphia was fighting to deny Amelia the transplant in spite of their Patient Bill of Rights. The Not Dead Yet Disability Activist Stephen Drake questioned why this did not apply to Amelia, when after all “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.” An outpouring of support for Amelia caused CHOP to examine their decision and to ultimately reverse it.
The same level of care and inclusive thought must be part of the process now in the Coronavirus era. Veiled in calculations of life expectancy and quality of life projections is the underlying fact that ventilators 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. We have the Americans with Disabilities Act, yet employers continue to deny work to the disabled. 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 still must fight pre-existing conditions clauses in insurance that discriminate against the disabled. 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. And in order to correct our grievously slanted decision-making, we must make sure that the decision-making body be inclusive of all stakeholders. These guidelines are far too important to be left to doctors alone. Disability champions, self-advocates and representatives of the elderly as well—all those possibly deemed unworthy in state’s guidelines—must be part of the conversation. The process must be open, public, and widely and inclusively debated. For it is not just lungs, kidneys, or even neurology that are at stake during this dire hour: This is a fight for the very soul of our country.
Copyright 2020, Susan Senator