As press reports show, some people with disabilities have already begun to protest the new movie, “Me Before You,” which opens Friday in the U.S. The primary objection concerns the essential plot point about which romantic partner’s life counts for less, the young able-bodied woman’s or the young and severely disabled man’s. Guess who draws the short straw?
As a severely disabled man myself — I was born with spinal muscular atrophy, a progressive neuromuscular weakness that renders me quadriplegic — I’m loath to give this movie any additional publicity. But the timing of the release could not be any more disturbing. Just a week after, on June 9, California’s so-called Death with Dignity law takes effect. The repercussions of this ghoulish juxtaposition are positively frightening.
The law — styled after its predecessors in Oregon and Washington — permits physician-assisted suicide in the nation’s most populous state, under strict regulatory controls. Nothing to worry about, supporters say. It applies only to those with terminal conditions who have been thoroughly evaluated by medical professionals.
I wish I could believe it. But all the safeguards in the world are nothing against the power of Hollywood to influence sentiments.
To me, one of the biggest dangers of these right-to-die measures isn’t the specter of pathological “angel of mercy” types performing unsolicited euthanasia. Nor is it the fear of penny-pinching health-management organizations pushing to move their most expensive patients off the books by denying coverage for ongoing maintenance meds in favor of a quick exit — though these are real worries, too.
No, my deepest concern is for the newly disabled or not yet well-adjusted or well-supported disabled who will be unduly seduced into relieving their relatives — and themselves — of the burden of living with a chronic condition. In short, the hazardous risk in movies like this is that it romanticizes and glamorizes an early exit for those who already feel marginalized, who feel they are living on borrowed time.
It may sound paranoid to worry about people being improperly influenced to have suicidal ideas. But as people like me know too well, the pressures already exist. When I go for my annual checkup with my gastroenterologist, for example, before I’m even shown to the waiting room I’m inevitably confronted with, “Do you have an advance directive or living will?” I understand that medical offices must defend themselves against lawsuits, but all the G.I. doc is going to do is tap on my belly and ask a few questions. Nothing even remotely connected with a life-threatening procedure is on the agenda.
OK, that may be only a minor annoyance. But eight years ago when I was hospitalized with internal bleeding and septicemia, the surgeons wouldn’t operate until my wife confirmed I was “full code” — meaning I had expressed a desire to undergo every measure possible to preserve my life. In other words, should they even bother trying?
Why is such questioning necessary? Shouldn’t life-saving be the default? Granted, it all worked out. Yet combining such hurdles with the blatant subtext of “Me Before You” — which is based on Jojo Moyes’ 2012 novel of the same name — only makes people like me feel we have to justify our preference not to commit suicide. In this right-to-die climate, we’re forced to defend our right to live, albeit as expensive, high-maintenance disabled folks.
Make no mistake: Quadriplegia is hard, and it can be tempting to give up. Like Will Traynor, the paralyzed heartthrob in the movie (played by nondisabled actor Sam Claflin), I rely on constant assistance from paid aides and family members. It’s nearly impossible to find a job, let alone a restaurant or store without steps or with an accessible restroom. It’s a good thing I’m positively bursting with self-confidence and know I do want my life to continue. But how many of those who are struggling to maintain self-esteem, who feel unsure of their right to exist, possess the courage and sheer chutzpah to withstand the invidious message that they’re better off dead? That the world might be better off without them taking up space?
This certainly isn’t the first portrayal of a disabled person’s suicide as a romanticized and noble sacrifice, and you can bet it won’t be the last. It’s a well-worn cliche of a saccharine fantasy. But from a disability perspective it’s nothing short of an offensive stereotype. Hollywood has been widely criticized for under- or misrepresenting women, ethnic minorities and the LGBTQ community; isn’t it about time it was brought to task for perpetuating primitive and potentially life-threatening prejudices about the disabled?
We shouldn’t be impelled to feel guilty for our needs or coerced into resolving them through suicide. It’s a matter of achieving life with dignity, not death with dignity. And in a civilized world, welcoming and accommodating all people will always be a better option than urging some to get out of the way.
Ben Mattlin lives in Los Angeles and is the author of “Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity.” He has also been a guest blogger for FacingDisability. Follow this link to read his post “Learning to Rock AND Roll.”
Being in chronic pain does eventually get you depressed. Like today I had to go to the store while sitting there waiting on my husband to come back out I started looking at the people that were able to walk in and out with no problem at all standing up straight. I started bawling because I can’t do that. My legs are so weak because of a herniated disc that is compressing my nerves in my legs. I can’t go on walks with my kids now and having to tell them all the time no mom can’t do this or that has me severely depressed. But I could never put myself out of misery because they still need me.
Be assured, asking about Living Wills and DNR or Full Code are routine questions in hospitals and doctors offices. Nothing personal there.