Embracing the Good Hard Life

And my new op-ed about laws gaining traction in the US that degrade the dignity of disabled lives

I talk all the time about how much I love Katherine & Jay Wolf’s writing on the Good Hard Life. Just because life is hard, doesn’t mean it cannot be good. And it will be hard for all of us, in different ways, at some point.

It struck me that this is true of the world as I watched the chaos in Congress, was deeply saddened by the wars in Ukraine and Israel, worried if kids these days are alright, and grappled with my own nerve pain.

It can be tempting to spiral to despair, but it’s so important to put yourself in context. People have faced these challenges before. Evil does not have the final say and pain is just temporary if you believe the cosmic story of Jesus and his redemption. 

Lean in, my friends, to the good/hard life narrative. 

I wrote an op-ed this week for my new project on disability policy over at Able Americans that intersects with this idea that we must hold onto hope even in the toughest of times. I posted it below for you to consider:

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ASSISTED SUICIDE DEGRADES THE VALUE OF DISABLED LIVES

Reposted from InsideSources.com

Tuesday, April 16, is National Healthcare Decisions Day. Living with a tough medical diagnosis that requires complicated healthcare decisions is not an enviable position.

I faced this myself when a neurosurgeon showed me scans of my rare spinal cord tumor and morosely told my husband and me that we should “get our affairs in order” at just 30 years old and two weeks after I became a mother. I became a quadriplegic the next week.

My first roll out in the community outside the rehabilitation hospital in Philadelphia after becoming a quadriplegic wheelchair user in September 2019.

Another woman on another continent faced life with a similar diagnosis — 31-year-old former riding star Caroline March in the United Kingdom was paralyzed in an accident two years prior. In a public note before her physician-assisted suicide last month, she said, “I’ve never understood society’s obsession with longevity and the need to live for as long as possible.” Similarly, Alan Watts, a well-known philosopher, famously said, “I’d rather have a short life that is full of what I love doing than a long life spent in a miserable way.”

It is devastating that Caroline couldn’t envision that life could be good as a disabled person. I, and many disabled women I know, went on to have a family, build a career, and establish new adaptive sports hobbies after our spinal cord injuries. Laws that enable physician-assisted suicide inculcate a harmful culture for people of all types of disabilities, and they are unfortunately spreading beyond Europe and Canada to the United States.

Today, assisted suicide is legal in 10 states and the District of Columbia, and 19 states have pending legislation this year. As of 2020, about 5,330 people in the U.S. have died with medical assistance.

What do these laws allow? If you receive a terminal diagnosis of less than six months, then you have the option to receive a prescription drug from a physician to end your life. As I learned with my own diagnosis, the definition and timeline of terminal is terribly subjective and often wrong. As Vincenzo Piscopo, president and CEO of the United Spinal Association, points out:

Quadriplegics can become eligible for physician-assisted suicide based on a technicality that also qualifies many others who could live long, fulfilling lives — if appropriate medical care were available. That is, if you have six months to live in the absence of medical intervention, you are eligible. Therefore, diabetics and dialysis patients — who can live for decades with treatment — also qualify.

In Canada, we see grave abuses of a law that is meant to shield physicians rather than vulnerable people. An Alberta father is fighting in the court system to prevent his 27-year-old daughter, who has autism and ADHD, from being granted medical assistance in dying. Human rights and disability advocates are sounding the alarm that in Canada, healthcare providers are pressuring disabled people to end their lives.

“The implication of (Canada’s) law is that a life with disability is automatically less worth living and that in some cases, death is preferable,” said Theresia Degener, a professor of law and disability studies at the Protestant University for Applied Sciences in northwestern Germany, in the Associated Press.

In Canada, we can see that the fiscal tradeoffs of long-term and palliative care costs appear to take precedence over the non-monetary value of a life in hospital administration. The monetary cost of long-term health care can often be quite high. For someone who becomes a quadriplegic, the first year of health and living expenses is an average of $1,064,716, and each subsequent year is an average of $184,891, according to the Christopher and Dana Reeve Foundation. This is not a position that we should be putting our physicians and hospitals in, to begin with.

In 2019, American Medical Association affirmed that, “It is the policy of the AMA that physician-assisted suicide is fundamentally inconsistent with the physician’s professional role.” The medical profession should instead redouble efforts to ensure optimal treatment for pain and discomfort.

From The Netherlands to Canada, we see that in the name of choice, disabled people are made to feel less valued than able-bodied people at best and worthy of early death at worst. We cannot let this happen across the United States. We should foster policies in this country that value all lives regardless of perceived ability or even longevity, and state legislators should reject assisted suicide legislation that degrades the dignity of disabled lives.

Rachel K. Barkley is director of the National Center’s Able Americans program. She wrote this for InsideSources.com.