A couple months ago, I heard a report on the radio that legendary filmmaker Jean-Luc Godard had died. I thought I heard them say the cause of death was assisted suicide. But then I suspected I had heard it wrong, because the newscaster said “assisted suicide” so casually, almost as if it were in passing. It sounded like assisted suicide was as common as having a heart attack.
If Godard had died by suicide with the assistance of a doctor, that in itself would be a big story, wouldn’t it?
Then I heard the same report repeated twice, and each time, the broadcaster skated swiftly over the words “assisted suicide,” as if it were a superfluous detail. Indeed, my ears had not been deceiving me.
It brought on a sickening feeling of social and political loneliness and abandonment that I often feel when this subject arises. I feel this way because I frequently see the right to assisted suicide defended not as the ability to escape the physical pain of a terminal illness, but to escape the emotional pain of being a disabled “burden.”
In this context, being a burden is defined as needing the help of others to do routine things like getting out of bed, getting dressed, going to the bathroom, and feeding oneself. Well, guess what? I need help doing all of these things and more, every day. That’s the way it has been for me for decades, and it will be that way for the rest of my life. The idea that I should want to die because of it is ridiculous to me.
That type of mentality implies that being someone like me is a fate worse than death. When the sentiment is accommodated by providing quick access to assisted suicide, its validity is resoundingly affirmed by our culture.
The ho-hum reaction of the media to Godard’s cause of death had let this twisted logic go unquestioned.
In Godard’s case, an unnamed person close to the family noted, “He was not sick, he was simply exhausted. So he had made the decision to end it. It was his decision and it was important for him that it be known.” A legal adviser to the family added that Godard “had recourse to legal assistance in Switzerland for a voluntary departure as he was stricken with ‘multiple invalidating illnesses.’ ”
Let me digress for a moment to unpack the word “invalid” when referring to disability. That word is so extremely degrading because it literally means in-VAL-id. But putting the accent on a different syllable makes it sound more palatable. The word equates the presence of a disability with the absence of human validity. The more disabled you are, the more it cancels you out. That would make me null and void.
Anyway, back to my point. In a 2014 television interview, Godard said, “If I’m too ill, I don’t have any desire to be lugged around in a wheelbarrow . . . not at all.”
Would he view me through such an ugly and distorted lens—as an invalid whose inevitable fate is to be lugged around in a wheelbarrow?
I sure hope he was wiser than that. There is something about the topic of assisted suicide that can make people who are otherwise keenly perceptive succumb without much of a fight to stereotypes and stigma that they would normally recognize as fraudulent.
When disabled people are dismissed as nothing but sad and tragic victims of the cruel hand we have been dealt, I can usually count on finding political refuge in progressivism. People with a progressive perspective see how stigma has been strategically exploited to deny disabled people agency over our lives. But when it comes to the right to end one’s life by assisted suicide rather than be disabled, the left often embraces it as a simple matter of choice.
People on the right who are opposed to legal assisted suicide, often for religious reasons, make overtures to disabled people who have similar apprehensions to come over to their side. They say they are defending the sacredness of every human life. But they seem to view living merely as breathing. They’re often the first to support lawmakers and public policies that deny disabled folks the public support programs we often need to lead rich, productive, and meaningful lives.
Would Jean-Luc Godard view me through such an ugly and distorted lens—as an invalid whose inevitable fate is to be lugged around in a wheelbarrow?
I use a motorized wheelchair, and I get through each day with the assistance of the people who help me do the things I can’t do myself. I call these people my pit crew, and I recruit, interview, hire, and fire them. I set their schedules and determine their tasks. Their $17-an-hour wage is paid by a state program largely funded by Medicaid.
So being someone like me doesn’t have to make one a burden with no way out except to end it all. Yet when disabled folks assert our desire to live by demanding and availing ourselves of programs like these, our agenda isn’t considered to be nearly as unassailable as those who assert their desire to die by demanding legal assisted suicide.
I’ve spent decades being active in the movement fighting to create more programs like this so that every disabled person in the United States who needs assistance can easily get it. Things have improved, but there is still no substantial political will for ensuring this type of support. As a result, many disabled people across the country don’t have as much control over their lives as I do because they can’t get the help that they need. They often have no option but to enter a nursing home or another oppressive institution. No wonder they feel hopeless.
I wonder how much situations like this add to the sense of abandonment that makes some disabled people feel like they are a burden.
In 2019, the National Council on Disability issued a report titled “The Danger of Assisted Suicide Laws.” The council offers recommendations to the President and members of Congress “to enhance the quality of life for all Americans with disabilities and their families.” The report says that states “should not legalize any form of assisted suicide.”
One of the primary dangers it cites is the pervasive “internalized oppression” that disabled folks often feel, which is defined as “being conditioned by dominant cultural values to believe that needing help is undignified, less than fully human, and again, burdensome to others.”
The report adds: “For some people with disabilities, demoralization or depression may be caused by the long-term struggle against socially constructed obstacles to one’s life goals, social devaluation of disability, social isolation, financial concerns, and lack of support to make life meaningful.”
It also recognizes that “if an individual’s only alternatives to assisted suicide are nursing home placement, burned-out family care, or suffering in isolation, assisted suicide may seem preferable.”
Let’s not forget how the for-profit health care system in this country exacerbates the problem. The report tells stories of people whose insurers denied them coverage for medical treatments but did offer to pay for assisted suicide. “When assisted suicide is legalized in the context of the U.S. health care system, it immediately becomes the cheapest treatment,” the council wrote. “Direct coercion is not necessary. If insurers deny, or even simply delay, approval of expensive life-sustaining treatment, patients can be steered toward hastening their deaths—and sometimes insurers help them to do so.”
Finally, the report concludes that society “should not be ready to give up on the lives of its citizens with disabilities until it has made real and persistent efforts to give these citizens a fair and equal chance to achieve a meaningful life.”
I don’t think I will ever reach the point where I feel that living as I do is pointless and that I’m ready to die. As long as the freedom to choose to die rather than live with a disability is seen as the right thing to do, I’ll take it as my duty to do the opposite.
The more disabled I become, the more purpose my life will have. The more support I need to stay alive, the more I’ll feel compelled to demand that it be made readily available. The more disabled folks will be accommodated in carrying out a desire to die, the more I’ll be obliged to fight to be accommodated in carrying out my desire to live.
Each breath I take will be a delicious act of subversion. It will give me something to look forward to, even if I’m being lugged around in a wheelbarrow.