The passage of Washington state's Initiative 1000, the "death-with-dignity act," saddens and scares me. It saddens me because I have serious concerns about legalizing physician-assisted suicide. It scares me because laws like this are direct threats against people like me.
Don't get me wrong. I am not a right-to-lifer. I am not particularly religious. Rather, my opposition stems from my lifelong experience as a person with a severe, progressive disability.
Born with spinal muscular atrophy, I have never walked or stood. I use a motorized wheelchair and am almost completely unable to move my extremities. I've had, however, the good fortune to graduate with honors from Harvard, get married, have two children and forge a career as a freelance journalist. I turn 46 this month, and I wasn't supposed to live past my teens.
Yet none of these accomplishments matters to those who only see my disability. What I've achieved--the very quality of my life--may mean nothing if I'm judged the way Initiative 1000 seems to judge people. Stripped of the accoutrements of my high-tech wheelchair, voice-recognition computer, family and the rest, as I might be in a doctor's office or on a hospital gurney, what's left of me is an emaciated, immobile rag doll. My diagnosis alone tells very little about who I am. But it makes me a good candidate for a poison prescription under Washington's new law and the similar one in Oregon.
Granted, these laws are only for those with no more than six months to live. But spinal muscular atrophy is frequently a terminal condition. To be sure, in my case it progresses very slowly. By anyone's measure I have more than six months to live. Yet what happens when something goes wrong? I recently recovered from a three month stay in the ICU at the UCLA Medical Center, where I had internal bleeding, multiple pneumonias, scattered blood clots and other complications from routine surgery. I was on a ventilator, unable to speak and at times unconscious. It's the closest I've ever been to death. Whether I would live another six months was not always clear. My wife was asked if attempts to save my life should even be tried. I'm grateful she was there to say yes.
The problem with physician-assisted suicide is that it presumes euthanasia is a rational choice for someone in dire straits, based solely on that person's diagnosis. If, on the other hand, a healthy, able-bodied person requests a doctor's aid in death, what happens? Antidepressant medication or psychological counseling will likely be prescribed.
Don't ill and disabled people, even those with less than six months to live, deserve the same?
Not that I have anything against suicide. It is a personal choice. I'm pro-choice. Like many people with disabilities, I don't want others deciding my fate, telling me what I can and cannot do. Yet if we're going to legalize medically aided suicide, let's legalize it not solely on the basis of diagnosis. Let's legalize it for everyone! Why should the terminally ill have the exclusive privilege of a death with dignity? (This, by the way, is the true, secret agenda of Compassion & Choices, the organization formerly known as the Hemlock Society, which was the chief backer of I-1000 and other euthanasia laws.)
To me, free choice can only be rendered when there's full disclosure about the options available. It's not a free and fair choice if the deck is stacked. So until it's clear and true that there is life after a terminal diagnosis, that an ill person's (remaining) life can be good and full and worthwhile, there is no free and fair choice. Why the rush to mandate death alternatives without equal time for maximizing life-enhancing choices?
As an advocate for people with disabilities, I believe we need to do a better job of ensuring equal access to all society has to offer, not just welcoming but valuing people with all sorts of medical diagnoses as viable, worthwhile contributors to our society. Measures like I-1000 reinforce an old stereotype that one is better off dead than severely disabled. It's hard enough to live a good life as a person with a hefty diagnosis in this youth-cherishing, athletics-venerating world--to maintain a healthy dose of self-esteem--without the promulgation of such an outmoded prejudice.
Ben Mattlin is a contributing editor at Institutional Investor and Dealmaker and a commentator on NPR.