Who Determines What a Worthy Life is?

A few days ago I read this article in the New York Times and it has sort of been on my mind ever since. If you haven’t read it, I would encourage you to read it here (The Nazis’ First Victims Were the Disabled) because I’m going to delve into some of my thoughts on it.

I found this to be an interesting history lesson, but after reading many of the comments I realized that this article brings up some significant and valid points about our healthcare system. With the affordable care act in jeopardy (good news or bad news based on your opinion) and the proposed cuts to Medicare and Medicaid we have some really big questions to ask ourselves about our future healthcare system.

Many of the comments deduced some of these realities as well. Many people, including myself really fixated on these couple of paragraphs.

A reading of Hoche and Binding’s “Permitting the Destruction of Unworthy Life” shows the similarity between what they said and what exponents of practical ethics, such as Peter Singer, say about the disabled today. As recently as 2015, Singer, talking with the radio host Aaron Klein on his show, said, “I don’t want my health insurance premiums to be higher so that infants who can experience zero quality of life can have expensive treatments.”

These philosophers talk about the drain on “resources” caused by lives lived with a disability, which eerily echoes what Hoche and Binding wrote about the “financial and moral burden” on “a person’s family, hospital, and state” caused by what they deem lives “unworthy of living.”

Experts point out the recent Republican health care proposals would strip Medicaid funding that helps the elderly, the poor, and the disabled live healthier and more dignified lives. A recent New York Times article quoted the Rev. Susan Flanders, a retired Episcopal priest, as saying: “What we’re paying for is something that many people wouldn’t want if they had a choice. It’s hundreds of dollars each day that could go towards their grandchildren’s education or care for the people who could get well.”

The concept of “get well” is meant, “they can’t walk and talk and function like me. I don’t want my taxes to support them.”

I’d be interested to know what Reverend Susan Flanders say about the contributions of:

  • John Cougar Mellencamp: Spina Bifida
  • Pope Pius IX, Lil Wayne, Socrates, Julius Caesar: Epilepsy
  • Stephen Hawking: ALS
  • Aaron Copland: Dementia
  • Michael J Fox, Pope John Paul II, Mohamed Ali: Parkinson’s
  • Christopher Reeves: Spinalcord injury
  • Helen Keller: Blind, deaf

I began this article thinking it was only about me, and people like me. I quickly realized it’s –about ALL of us. “Disability” or “unfitness” is subjective: Depending on how those terms are defined, we could all be included.

I fully recognize that there is a gray area here, and that not providing astronomically expensive medical care to an infant that hypothetically has anencephaly (neocortex is missing, which means there is no cognition, no awareness, so there cannot be a quality of life) is a far cry from medical expenditure on a 10-year-old autistic child. The question is: Who gets to choose worthiness? Who gets to choose which lives are worth investing in?

I support the idea of being conscious of our government spending. This includes opening up a dialogue about our healthcare and what it costs. What is the true cost of any human life? What is the “savings” if a specific life is allowed to end?

In some cases the ‘disabled’ person in question has autonomy the to decide the worthiness of his or her continued existence, like Hawking or Fox. However, in some other situations such as Alzheimer’s, autism, or down syndromes, one’s autonomy may not be fully developed, or the individual may not be able to fully articulate their thoughts. These are the situations that become ethically perilous.

Resources are finite, and have to be allocated. But that brings us back to our ethical dilemma – who determines quality of life?

John Rawls is a political philosopher and has spent much of his work in ethics. He developed his own “Rawls Theory of Justice” that may be useful in looking at this question.

Let’s look at this through a veil of ignorance. How would we make decisions if we did not know our IQ, gender, race, physical abilities. What if we made decisions today, and tomorrow, with a roll of the dice you would find out who you are and your fate then.

We make decisions on known information. But how would we want “the rule” applied to us and our children if in the future things change.

The knowledge that any of us at any time can become disabled, or the idea that we could give birth to a child with a disability, or that something terrible could happen to a loved one, is so incredibly frightening that sometimes it’s easier to pretend that won’t happen, or to look away from the subject.

The idea of eugenics is real, and it’s frightening. Certainly not in the way that Hitler was using it, but we are already dabbling with it with the technology we have developed. You can decide if you want a boy or girl, scientists have found the gene connected with down syndrome early and parents can make choices about that, and scientists have talked about splicing out certain DNA so that specific diseases will not be passed on. As a society, we need to think clearly and carefully about who makes these decisions, and how they get that power.

The current proposed budget slashes SSDI pretty considerably. One of the reasons behind the said budget cut is the belief that most or some of the disabled are fakers and moochers. Despite the fact that our disability program is one of the worlds most restrictive. Only one in five applicants gets accepted. Recipients live on average of $703 a month – the new budget would cut that by 10%.

The latest Graham-Cassidy bill would eliminate federal funding for the Medicaid expansion. Insurers would still have to cover everyone, regardless of pre-existing conditions, but insurance companies could charge people more based on their medical history. The 10 essential health care benefits  all plans must carry under Obamacare would also be eliminated. The last bill to make it through the House would leave 23 million uninsured by 2026, compared with who gets coverage under the current law, according to a Congressional Budget Office analysis.

I think one of the problems when developing these bills is that  our congressmen may  be  ignorant of what living with any type of disability is like. For instance Alabama congressman Mo Brooks  was quoted saying:

 “My understanding is that (the new proposal) will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool. That helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy. And right now, those are the people — who’ve done things the right way — that are seeing their costs skyrocketing.”

Let’s be honest, this is pure stupidity. Yes, we do have to find a solution to our healthcare system – but let’s not insinuate that a child with diabetes, a victim of a drunk driving accident,  or a father with cancer deserves to have higher costs because they weren’t living a healthy life. Without insurance, without a way to pay, those people  could definitely be saddled with a death  certificate.

It seems that our congressmen and women are certainly some of the loudest voices in deciding what a life of quality or a life of worthiness is.

Money speaks volumes, money helps to provide a quality of life for people, people with money are often the ones that get a say in how our society is structured. Certainly cutting funding for the elderly and disabled is a far cry from the Nazi eugenics program. However, I think it’s fair to say that we are sending a message about who we are as society with these decisions.


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