There are a few topics that, as a general rule, I just refuse to discuss on the Internet. Assisted suicide/right-to-die is usually one of them, because, generally speaking, it ends very, very badly.
I approach the conversation from a disability rights perspective, while many other people approach it from a nondisabled perspective, in which terminal or chronic illness and disability are abstract and terrifying things.
“I’d rather die than be disabled” is, after all, a widely-held belief.
Every now and then, though, I break my rules when it comes to things I talk about on the Internet, and right now it seems as though there’s a lot of conversation on this subject. A lot of people are asking me what I think, and the answer is a bit complicated. (I know, you’re shocked.)
I support the right to die with dignity, at a time and place of your choosing, but I support the right to live first, and until that issue is addressed, people are faced with an impossible choice. If your options are “experience a terrible quality of life” versus “die,” I can definitely see why many people would choose death.
I would choose death over being abandoned in a pool of my own waste in a nursing home and left to stare at a television for the rest of my life. I would choose death over being trapped in a hospital bed in my home, unable to leave, relying on a patchwork network of support to ensure that I didn’t get bedsores and subsequent painful infections and complications.
I would choose death over being trapped in a locked-in state without any enrichment, watching the world around me without being able to engage with it.
For that matter, if I had a terminal cancer that had invaded my brain and bones, was causing massive cognitive and neurological impairments, and was creating agonizing pain, I would probably choose death over a few days, weeks, or even months of living in acute misery.
But “poor quality of life” isn’t the only option when faced with chronic illness and disability, and this is what’s being missed in a lot of conversations about this issue. Poor quality of life versus death are the only options right now in many cases because of the way society is structured and because of the way we handle illness and disability. That doesn’t mean it has to be this way.
There was a case in Australia a few years ago of a man who fought ferociously for the right to die. Christian Rossiter was a highly active man before he incurred a high-level spinal injury that curtailed his ability to do many things without assistance.
In a world where the right to live was valued, he would have been provided with assistive technology. Instead, he was shoved in a nursing home bed and left to rot with a television on in the corner. That was his primary venue for interacting with the world. Who, disabled or not, ill or not, would want to live that way?
Understandably, he was unhappy with this state of affairs, and said he’d rather check out of the life hotel than prolong his stay any longer than necessary. He won his suit, and people characterized this as a victory.
But was it? Because what effectively happened here is that a man’s life was devalued, and an assumption was made: He was disabled, therefore there was no point in pursuing options to make him more comfortable. Had Rossiter been provided with access to assistive technology, to aides, to community-based living, and still decided that he wanted to pursue assisted dying, that would have been an individual choice made in an environment where he had the ability to actually make a choice because he was being presented with real options.
When Fem Korsten wrote about this issue earlier this year, she talked about how sometimes the pain associated with her disability is unbearable. Sometimes she can’t sleep, and the only thing she can do is cry for hours, exhausted and utterly demoralized by it. And her disability can be progressive, which means there’s a chance the issue could get worse. More pain, for longer periods, of greater intensity.
There are some things that can be done to manage and alleviate pain, but even with that full library of options available, pain can’t be obliterated. So Fem knows that she wants the option of being able to die safely and with dignity; it doesn’t mean she’ll necessarily take that option, but it should be there for her, just like it should be there for everyone else. Because individual experiences of disability and illness are variable, and death is a human right.
But so is life. And it is this that troubles me about the common framing of the right-to-die debate, as an issue of “Should we force people to stay alive in misery, or allow them to safely and humanely die?” “Do we have the right to dictate the nature of someone else’s life and death?”
What about a different approach? What about “Should we provide people with lots of options for living their lives, while also making assisted suicide an option for those who want it?”
The question as it stands now is a false choice: How many people would choose living in dismal conditions over death? Certainly some would, but many would seek death as an option, unaware or unable to access a third option: life with dignity.
Until those who support assisted suicide support the right to live with equal vigor, I’m going to view their arguments with skepticism. Because we all deserve control over our own lives, and the empowerment to make choices about how, when, and where we live: but society must also provide us with the tools to actually make choices, rather than cutting off entire avenues of pursuit altogether.