The feature story of this Sunday’s edition of the New York Times magazine contains the essay “Unspeakable Conversations” by Harriet MacBryde Johnson, describing an encounter with Peter Singer, Princeton University’s ethicist, defender of animal rights and advocate of killing the disabled.
Born with a muscle-wasting disease, her body mangled and confined to a wheelchair, Johnson is a living example of just the kind of person Singer would prefer to have benevolently euthanized. No small coincidence,then, that she received a personal invitation from Peter Singer to an exchange of views, first with his undergraduate class and then with the university as a whole.
Singer’s invitation to Johnson has put her in an awkward position, not only because her organization (Not Dead Yet) believes that one shouldn’t legitimate Singer by publicizing his views in a forum, but also because her role would by definition be that of “token cripple with an opposing view.” However, she doesn’t see herself as having any other option, believing Singer would only be too happy to take advantage of her refusal (”I offered them a platform, but they refuse rational discussion.”).
Many critics of Singer argue from religious motivations — claiming a respect for the God-given dignity of all human beings from conception to death, regardless of their “quality of life”. Being an atheist, Johnson is not in a position to appeal to such a universal standard, and the crux of her argument against Singer is that “the presence or absence of a disability doesn’t predict quality of life.”
Are we ”worse off”? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs.
Johnson’s account of her life is as good a defense of her position as any, not to mention a lesson of the courage, patience and determination it takes to live one’s live as an invalid. She’s a disability rights lawyer, an activist and an eloquent writer to boot. She derives “a great sensual pleasure to zoom by power chair on these delicious muggy streets,” and claims to have no more justification to commit suicide than most people. If the burden of proof were on her to determine the “quality of life” (as she argues it should be), then she certainly has provided it.
One can, of course, find fault with this position, as it seems to be predicated upon one’s subjective, conscious ability to enjoy the pleasures of life — what would her response be to those who were rendered unconscious or comatose?
A student poses this very question to Johnson in the classroom. She responses by telling a story of a family she knew who “took loving care of a nonresponsive teenage girl, acting out their unconditional commitment to each other, making all the other children, and me as their visitor, feel safe”. This isn’t good enough for Prof.Singer, who takes the opportunity to challenge her later in private conversation. Assuming that one could prove that an individual is totally unconscious and never to recover, Singer asks, wouldn’t taking care of this person be burdensome? Johnson replies that such a responsibility, if done properly and by the right people, could quite possibly be “profoundly beautiful.”
Johnson’s second encounter with Singer is a discussion, over dinner, on the topic of assisted suicide. She sides with Carol Gill, that “it is differential treatment — disability discrimination — to try to prevent most suicides while facilitating the suicides of ill and disabled people.” The quality of life of disabled people is by and large underestimated, and the case for assisted suicide often based on precisely such stereotypes. To those who defend assisted suicide as an autonomous choice, she counters that:
“. . . choice is illusory in a context of pervasive inequality. Choices are structured by oppression. We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life. Common causes of suicidality — dependence, institutional confinement, being a burden — are entirely curable.”
I personally find such a position wanting, for ultimately it doesn’t appear to be any kind of argument at all: Nullify the burdens of life and one may still choose to defend his right as an autonomous individual to leave it. (Incidentally a philosophy professor notices this as well and calls her on it — she neglects to include her response to the professor in her article, if one is to be had).
Johnson’s description of Prof. Singer himself is interesting. He is ever the gentleman, polite, amicable, eager to assist — he helps her to eat, fetches her a container for her food, does all he can to make her feel comfortable in her surroundings. This is the same Professor who, theoretically at least, argues that Johnson would be better off euthanized at birth.
Singer’s warm demeanor provokes a startling change in Johnson — initially, she tells us, she is horrified by not only Singer but her audience as well:
Even as I am horrified by what he says, and by the fact that I have been sucked into a civil discussion of whether I ought to exist, I can’t help being dazzled by his verbal facility. He is so respectful, so free of condescension, so focused on the argument, that by the time the show is over, I’m not exactly angry with him. Yes, I am shaking, furious, enraged — but it’s for the big room, 200 of my fellow Charlestonians who have listened with polite interest, when in decency they should have run him out of town on a rail.
But by the end of the article, she does something of an “about-face”. Responding to her sister, she confesses that she doesn’t exactly share the same sentiments as her colleagues:
”You kind of like the monster, don’t you?” she says.
I find myself unable to evade, certainly unwilling to lie. ”Yeah, in a way. And he’s not exactly a monster.”
”You know, Harriet, there were some very pleasant Nazis. They say the SS guards went home and played on the floor with their children every night.”
Mulling over her conversation in her mind, Johnson finds herself defending her position. Singer isn’t a monster; rather, he simply “has strange ways of looking at things. . . . It’s a twisted, misinformed, warped kind of beneficence [but] his motive is to do good.” Johnson’s confident that “it’s all talk”, that it won’t matter in the end, that ultimately good will triumph and we’ll establish a society “that has room for all of its flawed creatures”, and which will regard Singer as nothing more than an oddity. Hopeful thinking, but according to Johnson it’s less about hope than the need for practical definitions:
If I define Singer’s kind of disability prejudice as an ultimate evil, and him as a monster, then I must so define all who believe disabled lives are inherently worse off or that a life without a certain kind of consciousness lacks value. That definition would make monsters of many of the people with whom I move on the sidewalks, do business, break bread, swap stories and share the grunt work of local politics. It would reach some of my family and most of my nondisabled friends, people who show me personal kindness and who sometimes manage to love me through their ignorance. I can’t live with a definition of ultimate evil that encompasses all of them. I can’t refuse the monster-majority basic respect and human sympathy. It’s not in my heart to deny every single one of them, categorically, my affection and my love.
I disagree with Johnson’s conclusion in that I believe one may condemn Peter Singer’s philosophy as monstrous without necessarily defining Singer himself as such. But she does have a point: to the extent that we portray certain figures — a Peter Singer, a Dr. Kevorkian — as monsters, we risk losing sight of their humanity, losing the capacity for respect and sympathy that should be extended to every human being. As a Christian, I find myself obligated to believe Peter Singer’s life — and the life of every human being — is invested with far more worth and dignity than Singer’s own philosophy affords.
Blaise Pascal described the self as “detestable”. St. Thomas Aquinas referred to the person as “the most noble and most perfect being in all of nature.” Pascal was referring to the narrowness of the ego, consumed by self-interest and desire. Aquinas was referring to our true self, our true personality which is realized in selfless love for another, and according to which we reflect the image of God. Both Pascal and Aquinas are right in their own way, as it is within the capacity of each of us to model the angelic and the diabolical.
As an atheist I do not think Johnson would characterize it in this manner, but let us hope that she was able to glimpse something of what Aquinas meant, in her experience of the family which “took loving care of a nonresponsive teenage girl, acting out their unconditional commitment to each other”, and where Prof. Singer could only see such conduct as impractical and irrational, in seeing something “profoundly beautiful”.