clock menu more-arrow no yes

People with disabilities often fear they’re a burden. That’s why legal assisted suicide scares me.

We should focus on offering better, more affordable options for keeping people alive.

Demonstrators with the disability rights organization Not Dead protest in Portland, Oregon, in 2002.
Susan M. Gaetz/Getty Images

It's been nearly 10 years since I was rushed to the hospital at 4 am, but you don't forget something like that.

Internal bleeding. "It's gone septic," my wife recalls hearing, understanding only that that meant something serious. Something dangerous. Rough translation: blood poisoning.

All I remember is passing out in a hospital bed. My wife says I called out for my mother, who died in 1981. It looked like I was going to join her.

The bleeding was set off a few days earlier by a surgeon's blunder, in another hospital, during an unrelated gastroenterological procedure. In context, I was lucky: I was in a well-equipped, big-city medical center. I was quickly surrounded by medical staff.

But there was a delay. "Is he full code?" someone needed to know.

Again, a rough translation: Should the hospital proceed with lifesaving surgery, or was I DNR? Meaning: Do not resuscitate.

Fortunately, my wife was clear about my desire to live. We'd discussed this possibility before. And, in time, I made a full recovery. But not everyone has a significant other like mine. What happens to them? Does everybody in such dire straits get asked this question?

This is why, a year after the so-called right to die became legal in our nation's most populous state, California, I'm still profoundly uncomfortable with it. The value of my life has been discounted by medical professionals, and others, more often than I care to remember. That's because even at my healthiest, I am what some would consider terminally ill.

I was born nearly 55 years ago with spinal muscular atrophy, a congenital, progressive neuromuscular weakness akin to muscular dystrophy. Without extensive daily interventions — hands-on (and expensive) assistance with bathing, dressing, toileting, and feeding, as well as breathing treatments, wheelchair maintenance, and so forth — I wouldn't last long. In fact, before recent medical advances, half of the infants diagnosed with my condition perished before age 2. Their hearts and lungs simply became too weak to go on.

The knee-jerk questioning of whether my life is worth saving drives my opposition to the legalization of assisted suicide. And I know I'm not the only one who's experienced this kind of dismissive attitude, the subtle pressures and invisible coercions to unburden others.

California's End of Life Option Act went into effect on June 9 of last year. It was the latest in a string of right-to-die laws. So far, Colorado, Oregon, Vermont, Washington, and Washington, DC, have instituted similar statutes. That's got me worried.

Months before the California vote, a colleague and I met with a representative of a state legislator (the legislator herself had declined to see us in person) to urge a "no" vote.

Our reasons, simply put: Legalization of assisted suicide unduly threatens people with severe disabilities and health care costs, like us. In a country where the right to receive health care is under attack and medical costs continue to rise, offering the option of legal suicide is the last thing we need.

Looking back over the past year, I concede that I've felt no ill effects of the law's passage. Yet that doesn't mean I'm put at ease or have changed my mind. I still object to it and see bad things coming from it.

I’ve been legally qualified for assisted suicide since turning 18

To wit: The state's Department of Public Health recently reported that 111 people died under the act last year — that is, in its first 29 weeks of legislative life. That's roughly one person every two days.

Of those, slightly more than half, or 65 of them, had cancer. The rest? It's a mixed bag. Fully 20 had unspecified neuromuscular conditions, perhaps not unlike my own and my fellow advocate’s multiple sclerosis.

What's more, the law's so-called safeguards give me scant comfort. They require you to be mentally competent, age 18 or older, and diagnosed as having six or fewer months to live. I could qualify. If I ever get so depressed about my life that I'd consider ending it — which is not impossible, considering how difficult and expensive it can be for someone like me to survive, not to mention to maintain a good sense of self-esteem in an able-bodied and often inaccessible world — I want to have the same suicide prevention interventions in place that everyone else has. Only fair, right?

Right-to-die laws incentivize dying over other treatments

Other safeguards also feel like mere lip service. For instance, you must make two separate verbal requests and one written request of a doctor, at least 15 days apart, though the law doesn't mandate any kind of long-term relationship with that doctor. Furthermore, you must be able to self-administer the poison, but there is no oversight of that. Besides fear of coercion, I have concern about those who down the drug prematurely out of fear of one day being unable to self-administer.

Make no mistake: Fear of debility underlies most support for this law. Consider Brittany Maynard, the 29-year-old Californian with brain cancer who moved to Oregon in 2014 to take advantage of its right-to-die law before California had one. (The publicity she received is one of the reasons we have the law now.)

In press reports, Maynard's husband, Dan Diaz, said she ultimately ingested her lethal medication when she became afraid she'd soon lose the ability to down it herself: "If a seizure or a stroke occurs as her symptoms get worse, if she loses the ability to self-administer, if she suffers a stroke and she loses the ability to stand, walk or swallow, all of a sudden she's now trapped in her own body, and she's trapped dying the very way she was trying to avoid."

That's a lot of scary “ifs”! I don't judge Maynard, but I can't help wondering whether she would've made the same choice if our society prioritized providing assistive technology, or palliative care and hospice care that ease pain management. How many people like me — people who live full and active lives without the ability to walk or stand or swallow easily — did she talk (and really listen) to?

Proponents of right to die, such as Matt Whitaker, director of the California chapter of Compassion & Choices (formerly the Hemlock Society), assert the law is "working well." What they mean is that people are using it. But that doesn't really indicate they're better off because of it.

In a country where health care is expensive and inaccessible, death is cheaper

To be clear, my objection has nothing to do with religious belief or a right-to-life philosophy. I am pro-choice when it comes to abortion rights. It has everything to do with economics and equal protection under the law. Conditions like Maynard's and mine are expensive to treat on an ongoing basis. Death is cheaper. Sure, anybody who tries to push someone toward seeking death under this law is liable for felony prosecution. Yet a lack of adequate health insurance coverage alone sends a pretty strong signal.

To me, just having the state condone the option of unburdening others is tantamount to more than a green light. To the most vulnerable, it's a kick in the pants.

I understand the appeal of letting people on the brink of death have the right to go out on their own terms. But I've personally experienced the myriad often unspoken pressures to move aside, get out of the way, relieve others. And if I had to be kept in a dreary institution — a very real possibility for millions of people like me, if the schemes to slash Medicaid become law — I might request a terminal dosage myself! The struggle to go on living would become too burdensome for me, perhaps even downright impossible.

On days when every breath is a monumental struggle, it can be tempting to give up. I don't want that option to be too easy. Those of us who may be closer to death have as much right to protection from suicidal wishes as anyone else.

A better option, for me, is to ensure that people with ongoing conditions are as welcome and valued as anyone else, and indeed that they are assisted in living their lives to the fullest. Shouldn't that be the first priority?

Ben Mattlin, a freelance journalist based in Los Angeles, is the author of Miracle Boy Grows Up and the forthcoming In Sickness and in Health. His work has appeared in the New York Times, the Los Angeles Times, the Washington Post, the Chicago Tribune, USA Today, and Self magazine, and has been broadcast on NPR's Morning Edition.


First Person is Vox's home for compelling, provocative narrative essays. Do you have a story to share? Read our submission guidelines, and pitch us at firstperson@vox.com.

Sign up for the newsletter The Weeds

Understand how policy impacts people. Delivered Fridays.