A Life Beyond Reason

by Chris Gabbard

  As August grew older, we grew too. We were learning the difference between disability and impairment. As disability studies scholar Lennard Davis puts it in Bending Over Backwards, impairment “is the physical fact of lacking an arm or a leg. Disability is the social process that turns an impairment into a negative by creating barriers to access.” A building without a ramp or an elevator turns mobility impairment into a disability. The overarching idea behind this insight is one that Davis expresses in another context: “The ‘problem’ is not the person with disabilities; the problem is the way that normalcy is constructed to create the ‘problem’ of the disabled person.” Davis’s distinction—known as the social model of disability—made sense to me because it usefully differentiated impairment from disability. It was also tactically effective when disability rights activists campaigned for greater access and accommodation. We didn’t know it at the time, but back in early 2000, when we sued the Child Care Center at Presidio Heights to get August reinstated, it was this very distinction between disability and impairment that was at stake.

  At the beginning I had just assumed that the experience of raising a disabled child was supposed to be anything but beautiful. But my mind was changed by the late Harriet McBryde Johnson, whose article “Unspeakable Conversations” came out in a February 2003 Sunday edition of the New York Times. A disability-rights campaigner and a woman living with a muscle-wasting disease, Johnson had visited Peter Singer in his Princeton University classroom, doing so on behalf of Not Dead Yet, a group opposing child euthanasia and physician-assisted suicide. She was gutsy, diplomatically confrontational, and smart in her exchange with the man the Encyclopedia Britannica calls “one of the world’s most widely recognized public intellectuals.”

  Because she was born with a congenital impairment, Johnson could have been one of the infants whose life was terminated shortly after birth. Consequently, she was an ideal person to debate Singer. She was also an atheist, so he couldn’t accuse her of arguing against his position on religious grounds, which he dismissed outright. People of faith who opposed his beliefs were a dime a dozen. It was precisely because she was both an atheist and someone living with a significant congenital defect that Singer was somewhat thrown back on his heels.

  Singer advocates in favor of decriminalizing child euthanasia, and he lays out this view in various writings, including his 1988 book Should the Baby Live? The Problem of Handicapped Infants (coauthored with Helga Kuhse). He believes that new parents ought to be given the option of deciding whether or not to keep their impaired (or even their unimpaired) newborns alive. These parents should have an assessment period of up to twenty-one days after the birth to choose whether or not they want to take the baby home or to allow doctors to terminate his or her life. Singer does not address the issue of what to do in the case of a myriad of serious medical conditions that do not present in the first twenty-one days of life. With regard to an infant born with an apparent problem, parents would be able to reject that infant so that they could try again, to see if they could conceive a “better” baby. The core of his proposal—putting an end to suffering and eliminating waste—aligned with the Enlightenment goal of improving quality of life by judiciously organizing human affairs.

  Singer is a preference utilitarian, meaning his stance is rooted in a strain of utilitarianism that stems from Jeremy Bentham and Bentham’s student John Stuart Mill, both of whom contend that what should be considered “the good” is whatever benefits the greatest number of people. Along utilitarian lines Singer maintains that society has an interest in conserving its limited resources, and so cost of treatment and care should be a major consideration in public policy decisions. Society, he argues, should allocate its assets for the maximum benefit of its members who are physically and mentally able and not expend them on those born with serious defects.

  Singer believes that legalizing child euthanasia would promote “the good” of couples by expanding the range of choices available to them when it comes to forming the kinds of families they want to have. When explaining the reasons why new parents would want to terminate their infants’ lives, Singer often brings up the example of infants born with Down syndrome. Down syndrome is the test case he frequently returns to, and here he seems to be working from an old paradigm. But conditions have changed, as M. Lynn Rose makes clear in The Routledge History of Disability:

  Only a generation or two ago, babies born with Down Syndrome were not expected to live very long, and so they were routinely placed in institutions, where, denied the basic comforts of childhood, they didn’t live very long. Since the early 1980s, the life expectancy of people with Down Syndrome has doubled, not because of some breakthrough medical advance, but because of higher expectations coupled with appropriate resources.

  Our understanding of Down syndrome and what is possible for those born with it has changed dramatically just in the course of a few decades. Yet Singer continues to espouse his ideas in his lectures and more recent writings.

  While Singer most frequently invokes babies born with Down syndrome to make his case, the lives of those born with other impairments such as fragile X syndrome, spina bifida, cystic fibrosis, cerebral palsy, profound cognitive impairment, and so forth also would be subject to the parents’ preference if he had his way. In fact, depending on the decision of the parents, any baby—regardless of health status or impairment—could be subject to having his or her life ended. It would be as though legal abortion would extend into the fourth trimester. Still, babies with birth defects are his main focus because infants with impairments, he believes, will be inherently worse off than those unimpaired. Their lives will be permeated with suffering and therefore will not be worth living. He is one of the many philosophers who are openly skeptical of the idea that disability is not intrinsically suboptimal.

  Singer’s philosophy fits in well with a culture that equates personhood with autonomy, self-reliance, and individuality. A person, according to Singer, is an entity that has consciousness of itself in relation to time and space and is aware that it is going to die. As for the supposed right of infants to life, he maintains that they are not legally persons (fully human) with rights. A baby lacks this awareness and so is not yet a person with a right to life. Regarding infants with impairments, because they are not yet persons, and because they supposedly will be miserable when they grow older, it would not be wrong—but in fact would be humane—to end their lives at the beginning. He writes in his 1979 book Practical Ethics:

  That a being is a human being . . . is not relevant to the wrongness of killing it; it is, rather, characteristics like rationality, autonomy and self-consciousness that make a difference. Defective infants lack these characteristics. Killing them, therefore, cannot be equated with killing normal human beings, or any other self-conscious beings. This conclusion is not limited to infants who, because of irreversible mental retardation will never be rational, self-conscious beings. . . . Some doctors closely connected with children suffering from severe spina bifida believe that the lives of some of these children are so miserable that it is wrong to resort to surgery to keep them alive. . . . If this is correct, utilitarian principles suggest that it is right to kill such children.

  Singer is hardly alone in advocating child euthanasia. Throughout his life Joseph Fletcher, a pioneer in the field of bioethics, was a leading proponent of it. And other bioethicists, such as Jeff McMahan and Jacob Appel, have presented similar ideas. Many bioethicists, in fact, see the reasonableness of child euthanasia.

  Child euthanasia is not a new concept. It became popular during the eugenics era—the first four decades of the twentieth century in Britain and the United States. (Eugenics was the belief that various peoples and nations and even the whole human race could be improved through better breeding, somewhat like creating thoroughbred lines of dogs and horses.) In 1915 the chief surgeon of a major Chicago hospital, Harry Haiselden, on becoming involved in the Baby Bollinger case, campaigned vigorously for child euthan
asia. He convinced the parents of the infant John Bollinger that the best option for society and for John, their child born with physical anomalies, was to let him die, claiming that the child would live a miserable life and drain public resources. In the face of public protest, Haiselden argued at a press conference that “mercy killing” for such a child was more humane than letting him live. Many prominent figures defended him, among them Helen Keller and Clarence Darrow.

  In 1917 Haiselden wrote and starred in the movie The Black Stork, a polemical film supporting “lethal eugenics”—the third stage in eugenic thought—the active taking of life, euthanasia. The first two stages did not involve deliberate killing. The first entailed encouraging only the “fittest” individuals to form into couples and procreate. The second involved the forced sterilization of mental or physical “defectives,” and a number of states executed this practice; the US Supreme Court ruled the procedure constitutional in its 1927 decision Buck v. Bell on the grounds that eugenic sterilization served the good of the state. (California, by the way, outpaced all other states in the number of people its officials ordered sterilized.) Haiselden was an early supporter of a third stage, the taking of life, the kind of thing Singer now advocates. By the time of Buck v. Bell, the public was becoming more and more accepting of all three stages, including Haiselden’s lethal eugenics. While support was widespread, it also was quiet. It wasn’t until the liberation of the Nazi death camps in 1945 that support evaporated. Interest in “neo-eugenics” is now rising under the auspices of the Human Genome Project, and genetic engineering is gaining traction with the public.

  When Harriet Johnson debated Singer in his Princeton classroom before his philosophy students, in effect she had to argue in favor of her own existence. With regard to this encounter, she later wrote, “I am reminded of a young woman I knew as a child, lying on a couch, brain-damaged, apparently unresponsive, and deeply beloved—freakishly perhaps but genuinely so—living proof of one family’s no-matter-whatcommitment.” During the interchange, she had brought this young woman up, and Singer had responded by asking, “Don’t you think continuing to take care of that individual would be a bit—weird?”

  “Done right,” Johnson replied, “it could be profoundly beautiful.”

  When I read this in her New York Times account, I was stunned. It had never crossed my mind in quite that way. It could be beautiful? The rational thing to do would have been to smother the person with a pillow. Johnson had given me a vision. The question then became how, as a dad, I was to do this. I now desired not only to be August’s champion and friend but also to perform the whole affair with a sense of aesthetics, as the masterwork of my life. If I couldn’t be a great scholar, at least I could be a great father to August. I would make caring for him as profoundly beautiful as I could.

  V

  MY SON DID NOT BREAK MY BELIEF IN FACTS AND reason so much as end my blind faith in them. It was not that they didn’t matter anymore but that they were not all that mattered. Love was something else. It was a separate reality. If he were alive to observe and comment on my life with August, the Romantic poet Samuel Taylor Coleridge would in all likelihood judge me, as he did the figure of Betty Foy in a poem titled “The Idiot Boy” by his friend and poetic collaborator William Wordsworth, an “impersonation of an instinct abandoned by judgment.” This had once made sense to me, but by this later point I had begun to understand life differently and so would have retorted, “What is love if not ‘instinct abandoned by judgment’?” Not understanding Betty Foy’s motivation, her profound parental love for her child, was a failure of imagination on Coleridge’s part. Maybe my behavior was evidence of unredeemable stupidity. There was a time when I would have thought so. I once believed that loving and wanting love were weaknesses to be overcome, that only weak-minded people needed love. By now, though, I had come around to a different way of thinking, that it is not the unexamined life that is not worth living but the life without love.

  August’s skills actually increased, albeit incrementally and at a glacial pace. Advancements came so slowly that they snuck up on us. In the early spring of 2006, when August was almost seven, the Mt. Herman occupational therapists began getting him used to walking in a Rifton gait trainer. Mt. Herman’s corridors were solidly parked on both sides with Riftons the way cars line the curbs in San Francisco. These were pieces of equipment similar to the Mulholland stander of August’s toddler days. The Rifton too is a standing device, but it differs from the Mulholland in that it allows the person in it to plant his or her feet firmly on the ground. A person in a Rifton can self-propel forward—in others words, can walk.

  At first August furiously resisted. For six months he propelled himself up and down the corridors taking big angry strides and crying loudly. Eventually, though, he adjusted and grew to love being in it. The first time I saw him taking steps and smiling I burst into tears. I decided right then that we had to have a Rifton at home for him to walk up and down our long driveway. When I discovered that the cost of one was the equivalent of two mortgage payments and that insurance wouldn’t cover the expense, Ilene and I decided to dip further into what was left of our savings.

  When we rolled August in his wheelchair through the kitchen door out into the open air, he became hysterical with joy. Down the ramp we rumbled, through the carport, and out onto the driveway. When he was relatively small, the caregivers—university students Ilene and I had begun to hire—were able to transfer him into the Rifton on their own, scooping him up from his wheelchair, carrying him to it, and dropping his legs down into the center of the device. As he grew older, bigger, and heavier, they more and more needed my assistance. When the preparations were complete, we released the brakes. Our driveway was long and paved, and he often tooled up and down the full length of it. The spasticity of his cerebral palsy made his leg and head thrusts wildly ungainly. His was a jerky, staccato motion. One time he marched the length of the driveway and, because I wasn’t paying attention, he almost entered the street. I sprinted down and caught him just in time. Up until his eleventh year he strode up and down the driveway like a tin soldier needing oil.

  I believed that August was living a satisfying life. How, though, could I have speculated about his thoughts, feelings, and level of life satisfaction? How did I avoid being presumptuous? How dare I speak for a nonverbal person? It is around this last issue that I began to detect a disconnect between the goals of the disability rights movement and the needs of our son. The movement promoted the emancipatory project of independence and self-determination for disabled people. The individuals spearheading this social justice campaign were primarily people with able minds living with mobility or sensory impairments. The possibility of living and working independently in the community would indeed be realizable for them, if only society would lower its barriers to access. In this, the movement was attempting to implement for the disabled community an Enlightenment legacy: the Lockean, libertarian dream of freedom.

  But this dream would never be feasible for August. He epitomized an Enlightenment paradox: he had been raised like Lazarus from the dead by medical intervention, but he was profoundly cognitively impaired on account of that intervention and so was unable to live independently. He would forever require assistance with hygiene, feeding, bathing, dressing, and daily recreational activities. Most importantly, he would always need someone to speak for him. Over time, I found that many disability rights activists and scholars could not imagine him—could not (or did not want to) conceive of a person with such an extreme level of deficit. Moreover, on a few occasions when I spoke for August, I was answered with hostility. The movement had a hard time figuring out what to do with disabled people’s parents, whom it regarded with suspicion (often rightly so). The implication was that I needed to get out of my son’s way. I was blocking his development, silencing his aspirations, and thwarting his self-realization.

  As a disabled person, August occupied an uneasy place in the movement. In fact, he was an outlier,
a marginalized figure even among the disabled. Because he couldn’t keep up with their drive for independent living, and because he could not speak for himself, they had to leave him behind. While I understood and accepted the rationale for why this had to be so, the realization that even this movement was leaving our son behind brought on a gloomy mood.

  Still, I did not become disillusioned with the movement. Some in it did in fact embrace and champion people like August, chief among them Harriet McBryde Johnson. In her 2005 Slate piece defending the right of Terri Schiavo to remain alive (“Not Dead at All”), she articulated an objective for which I could strive on August’s behalf, one far more humble than that for which the movement generally was aiming. Her vision for people like him was that of a dignified and inclusive existence. Rather than independent living and the slogan “Nothing about us without us,” the appropriate social and political principle to campaign for in August’s interest would be that in which his dignity as a human being and his right to remain alive would be recognized.

  The question of care also was controversial in the disability rights movement. The word care was to be resisted, and the activity of caregiving was not infrequently demonized. Of course, care has been a site of oppression for disabled people. People have died on account of care done poorly. But August would have died without care. Care sometimes is necessary to insure the survival of vulnerable people. For good reason, care was a contested issue, but I sometimes lost patience with people who casually dismissed its necessity.

  In my case with August, the issue of care needed to be reformulated. What required consideration was a mutually beneficial ethics of care. My role as caregiver, the one I crafted for myself, was that of not adhering to a so-called custodial care model, the one followed in institutions and implemented by their minimum-wage attendants, but of practicing caring labor. The concept of caring labor was one I picked up from reading a 2002 article by Pamela Cushing and Tanya Lewis published in the journal Hypatia. Caring labor became my theme. What did this entail? I made it a point to learn and recognize August’s little ways. These were his subtle expressions—the twitch of his lips, the shift of an eyebrow. He grimaced; he grinned. He fussed; he laughed. He let me know what he wanted or needed. Putting his hand in his mouth in a particular way indicated he was hungry, and he made a certain sound when he wanted to go to bed.