Attentive to his cues, I viewed the connection we had as one of mutuality. Our lives together were characterized neither by his dependence on me nor by my surrender of independence to him. Rather, we lived in a world of interdependence. We depended upon one another in radically different ways. Caregiving was not an expression of selfless idealism on my part. I did not do it because I was charitable, altruistic, saintly, or stalwart. In truth, I needed him as much as he did me. If I didn’t love him, all of this effort would have been a grudging sacrifice. But he made me happy, and so, in our peculiar way, we split everything down the middle.
Within our household, August seemed normal enough, but whenever out in public we were constantly reminded how unusual he appeared to other people. What had become ordinary for us at home triggered awkward, exaggerated, and even pained visceral reactions outside of it. He shocked people. Although he was still a little boy, and a handsome little boy at that, they responded as though he were a monster. They either gawked or looked away blatantly, as if a glance at him would freeze them in their tracks.
August’s disabilities offered ample opportunity for public interpretation. Occasionally someone would come up to us and say that we were blessed. I suppose it could have been worse: they might have told us that we were cursed. People would give unsolicited advice and offer banal inspirational sayings such as “Everything happens for a reason.” Some would extend hollow encouragement, often of a religious nature, such as “God chose well when he made you his parents” and “God doesn’t send you anything you can’t handle” and “This is a part of God’s plan.” The worst was the one Erma Bombeck coined in 1980: “God gives special kids to special parents.” According to Wikipedia, Bombeck was a humorist.
And there were people who would say, “I can’t imagine what you’re going through.” The people who said this divided into two camps. For the vast majority, it was a genuine expression of compassion. When they told us, “I can’t imagine . . .,” they were speaking ironically, saying the opposite of what they meant. They actually could imagine enough of our situation to recognize that it was a difficult one, and so they were signaling their support and wishing us well. But a few would say “I can’t imagine . . .” to imply their superiority. This usually came from well-educated people implying that we should have aborted. Their veiled message was, “Weren’t you smart enough to get tested?” They were too intelligent to allow something similar to happen to themselves. They were unaware, of course, that the warning signs hadn’t appeared until two days after August’s due date, and, the last time I’d checked, abortions were still illegal in the fourth trimester.
Privately, I would treat August with the dignity he deserved, and publicly I would demand that others do the same. This policy came down to even the smallest things. For example, I always adhered to a strict code, one stipulating that I would never say anything to or about him that I would not want him to understand, were he able to do so. Even if I could make people laugh, I wasn’t going to do it at his expense. Some fathers adopt a different approach. In his book Where We Going, Daddy? Jean-Louis Fournier frequently makes jokes at the expense of his two severely impaired children, Mathieu and Thomas. This book won a literary prize in France, and an NPR critic praised Fournier for writing “honestly and admirably about something off-limits to most everyone else.” Suffice it to say that I find making fun of one’s disabled children for the public’s amusement neither honest nor admirable. Still, I don’t want to come down too hard on Fournier: having such children is not easy.
My own brand of irreverence attempted to rope August into the joke. One morning in the spring of 2006 I was wheeling him around San Marco Square by the fountain and the three big bronze lions. A well-dressed middle-aged woman came up to us and showed great interest, as people on occasion did.
“Who is this?” she said enthusiastically as she bent down to get a closer look.
And I replied, assuming a God-like tone, “This is my beloved son in whom I am well pleased.”
In June 2005, August was suddenly and unexpectedly granted the Medicaid waiver. For many months Ilene had petitioned our elected representatives for help, attempting through letters, emails, and phone calls to find an official to pay heed to our situation. Finally a woman working in the office of State Senator Stephen Wise called back and, with the senator’s help, she pulled strings with Florida’s Agency for Persons with Disabilities and got our son off the wait list. After being granted the waiver, he became eligible for what in Florida is called Consumer Directed Care Plus, or CDC+. With it, we found that our out-of-pocket expenses remained exorbitant but that our financial hemorrhaging stopped. Subsequently, whenever Ilene contacted a state agency representative by phone, it was not uncommon for her to be addressed condescendingly. This was not true of the support coordinators and service providers interacting directly with families like ours at the local level; people who worked with us face-to-face generally were helpful. But the people in Tallahassee, the state capital, treated us differently. To them, Ilene was a mother whose child had a disability that must have stemmed from drug or alcohol abuse or some other bad behavior during pregnancy. Because of this supposed moral failing, she must have done something to cause August to be the way he was. His impairments provided them with an opportunity for mother shaming. To them, these problems disclosed her lack of love, willpower, and maternal dedication. Consequently, when she spoke with them, they always seemed to be on the verge of asking, “Have you stopped smoking crack yet?” Our encounters with the Tallahassee office of the Agency for Persons with Disabilities reminded me of a line from Aleksandr Solzhenitsyn’s One Day in the Life of Ivan Denisovich: “How can you expect a man who is warm to understand one who is cold?”
Then, in April 2009, everything in our family’s domestic arrangement changed. August had grown big and heavy, and Ilene suffered a herniated disc in her neck brought about by lifting him. For several months she was laid up in bed. An articulating titanium disc had to be inserted into her vertebral column at neck level to replace the deteriorated one. Afterward, her doctor told her to not lift any weight beyond fifty pounds. Because August by then weighed more than seventy pounds, I had to assume all of his caregiving—his daily dressing and hygiene and transportation to all doctor and therapy appointments, to his school each morning, and from the after-school facility each afternoon.
After Ilene went back to work full time, she took on the responsibility of making all the phone calls for August’s care and sorting through the mountains of bills. August generated a lot of paperwork from pharmacies, doctors, therapists, and our insurance company. She spent many hours on hold listening to canned music while waiting to speak with a representative of one company or another about problems with a medical bill, a medication error, or an insurance company claim. Our insurance company—no fly-by-night discount operation but supposedly one of Florida’s best—frequently denied our claims. In fact, we constantly struggled with systematic denial. There was so much that insurance just wouldn’t cover. Ilene would then have to spend hours appealing the decision, sometimes successfully, sometimes not. Occasionally the device, procedure, or medical office visit for which the claim was denied was explicitly covered according to the terms of our policy. We could have sued, but attorneys taking such cases require a retainer of $20,000 to $30,000.
The additional responsibilities at home now subtracted a sizable number of hours out of my workday. Because I was the only person in the household able to lift August, I could not be away from home for more than eight hours at a time, if even for that. Every day that he was not at school—morning, afternoon, and evening—I had to be on hand to perform his various routines. I was very nearly confined to the house. I could not go away at all except to teach my classes and could not leave overnight. As a long-term consequence, I became what is known as “stuck in mid-career.” I was not able to go to conferences, travel to do research, or apply for the tempting academic opportunities that entailed going abroad or, fo
r that matter, going anywhere. The situation might have been ideal, had I been agoraphobic.
Even so, I found myself, in the words of Alexander Pope, “rich ev’n when plunder’d.” Good feelings bled into bad—and vice versa. If I were to succinctly sum up the experience of caring for August, it would be with the oxymoron “a woe of ecstasy,” a phrase from Emily Dickinson. The words yoke together all the pain, hardship, frustration, love, and joy Ilene and I felt. We were lucky—our son embodied the art of reconciling contradictions. He contained opposites: he was beauty in messiness, shadows and light. In South African English, a sun shower—simultaneous sunshine and rain—is referred to as a “monkey’s wedding,” a translation of the Zulu phrase umshado wezinkawu (“wedding for monkeys”). Our son brought us a wedding for monkeys.
VI
ON A CHILLY NOVEMBER EVENING IN 2005, I positioned myself outside by the doors of the Adam W. Herbert University Center at UNF. A waxing crescent moon dangled on the western horizon. Peter Singer was scheduled to speak in less than one hour. His address was titled “The Changing Ethics of Life and Death.” By this point, I considered myself a participant in the disability rights movement. I didn’t like protesting, but there I was, quixotically passing out leaflets and holding a protest sign announcing in bold letters “Peter Singer: Deadly for the Disabled.” Protesting Singer was something I felt I had to do.
I wasn’t challenging Singer’s right to speak. But I also had a right to speak—that is, to stand peaceably near the entrance, hold a sign, and pass out leaflets stating my opposition to what he was proposing. I was protesting on behalf of Not Dead Yet, the group I had learned about through Harriet McBryde Johnson’s 2003 article in the New York Times. Through email I communicated with one of Not Dead Yet’s organizers, Stephen Drake. He warned me that sometimes people show up to protest Singer with signs that read “Should Singer Live?”
“We tell them, ‘Put those signs away,’” Drake wrote. Tempting as it might have been, we weren’t supposed to imply that Singer was not worthy of life. An hour prior to the scheduled time a record crowd was turning out: over nine hundred people would attend that night. Students and fellow faculty were approaching the doors and taking my leaflets. It was a big deal for our university’s Department of Philosophy to have brought Singer to campus, so these colleagues weren’t thrilled about my little protest.
Like my colleagues, I had always prized intelligence. I was not a candidate for Mensa, but what encouraged me to revere intellect was growing up in Palo Alto, with Stanford less than half a mile from our home and a number of Nobel Prize winners and famous technology innovators living in our neighborhood. People around me had good brains, and that meant money, respect, and international influence. And now I was working in an academic environment that privileged being smart. We academics advanced in our careers by demonstrating how clever we could be, and much depended on flaunting intelligence.
August coming into my life had forced me to question these basic assumptions. We equate intelligence with being human, but he posed for me and all who met or knew of him the provocative question of what it means to be human. For many, someone with his caliber of cognitive and physical impairment created uncertainty about where humanity leaves off and animality begins. This question of where to draw the line had been a major preoccupation of eighteenth-century Enlightenment thinkers. In the twenty-first century, many university scholars and intellectuals would not have considered my son to be human based on his extremely low IQ. But because August was my child, I felt that I had an insight that they didn’t have. I realized that framing the question in terms of an animal-human divide was spurious.
This false dichotomy was a product of Enlightenment thinking, and I found myself undertaking an abrupt about-face. I suddenly wanted to reject the entirety of the Enlightenment. Throw it all out, I thought angrily, everything that had anything to do with the Enlightenment, but especially its monstrous dreams of reason. Yet I could not sustain this animosity because I immediately had to confront the conundrums of the Enlightenment, for its embedded contradictions make them difficult to resolve. It is not possible to reject the Enlightenment’s legacies that we don’t like without also rejecting the ones we do. For example, the concept of women’s emancipation from patriarchy was rooted in Enlightenment thinking (beginning with Bathsua Makin and Mary Astell and continuing with Sarah Scott and Mary Wollstonecraft), as were the discourses of human rights and individual autonomy.
But therein lay the rub: On the one hand, the inquiries and commitments of Enlightenment rationalism cast doubt on my son’s claim to full membership in the human family and so would deny him his rights, even his right to live. On the other, for me to even speak about my son’s “human rights” was to draw upon one of the chief legacies of the Enlightenment—the argument that such a thing as human rights exists. Consequently, there is validity in Michel Foucault’s assertion (in an article titled “What Is Enlightenment?”) that to be for or against the Enlightenment, to either accept or reject its tradition of rationalism, is to engage in a false dichotomy. “We must free ourselves,” he writes, “from the intellectual blackmail of ‘being for or against the Enlightenment.’”
When Singer started his talk, I left my protest sign outside the door and found what was the last empty seat. Singer projected his PowerPoint on a large screen above his head. As he was speaking, my overall objection to his approach was still coming into formation. It would be one that philosopher Elizabeth Barnes would express in her book The Minority Body a decade later. Singer claims to argue from a position of absolute objective neutrality, but, as Barnes points out, “It’s easy to confuse the view from normal with the view from nowhere.” I noticed that evening how much he dwelled on the category of personhood. He argued that babies were not yet persons. As noted earlier, for Singer, a person is an entity conscious of itself in relation to time and space and aware that it is mortal. It dawned on me that what Singer was saying was coming straight out of John Locke in his 1689 Essay Concerning Human Understanding.
A person, according to Locke, is someone who is conscious of oneself and one’s surroundings and location in time, has a long-term memory, and is able to think abstractly. Moreover, a person is able to think and act completely on his own. In no way is he dependent on others. Because such a being had these capabilities, a person possessed a full array of political and legal rights.
When the time came for audience questions and comments, I lined up with many others at the microphone. Each of us was given half a minute. The line was long, and I was near the rear. Already it was late. I had just thirty seconds with Peter Singer. This wasn’t much, and I knew that nothing I could say in that short amount of time would throw him back on his heels. My objection to legalizing infanticide was the same as that regarding physician-assisted suicide: all that glitters is not gold. In a nation run by utilitarian conservatives and profit-hungry medical insurance companies, it won’t be long before what is being proffered as libertarian “choice” becomes an insidious form of coercion.
Almost everyone ahead of me in the line voiced objections rooted in Christian teaching. Many quoted the scriptures, and their questions amounted to pretty much the same one: “What is your foundation?” In other words, what was his foundation in religious faith? I knew very well that this line of inquiry wasn’t going to get anywhere with a committed atheist like Singer. Not that I had any silver bullets. Because I had not been trained as a philosopher, I really didn’t know what to say, and I wasn’t terribly confident that I wasn’t going to make a fool of myself. When I finally got up to the mic, I froze for a second. The only thing I could think of to say was to point out that his notion of person stemmed from Locke’s Essay. That was aiming my arrow pretty low. Locke was the first philosopher to use the word person in the way that Singer was now using it.
Singer more or less agreed.
“And isn’t it true,” I said, suddenly thinking of something else, “that Locke, the philosopher who was th
e first to define person in the way that you are now using the term—didn’t he consider nonpersons—his word was changelings—didn’t he conclude that changeling infants should not be put to death?”
Once more he agreed.
And then I thought of another thing to say: “And didn’t he also say that changelings at birth should be allowed to live because no one at the time when they are born knows precisely what the future holds, that some changelings may grow up to become abstract thinkers? That we can’t know for certain which of them will think abstractly and which won’t? And didn’t he ultimately conclude that, in humility, we should defer to what we don’t know? That we should err on the side of caution? We should let them live?”
Singer conceded that, yes, this was Locke’s position.
And then my time was up. Nobody applauded as I walked back to my seat. Probably the only people in the auditorium who understood our exchange were Singer and a few people in the Philosophy Department. I felt that I had completely let down Not Dead Yet. My objections to Singer’s position were too technical to be widely understood.
What should I have said? I should have confronted him about his ableist bias. I should have drawn attention to the fact that he was reinforcing the dichotomies of abnormal and normal and disabled and nondisabled, and that he was paying uncritical deference to norms of human function. I should have spoken out that it is not just people with “normal” bodies and “orderly” thought processes who have a right to live (how many of us would survive that test!). I should have argued that his support for euthanizing babies is based not in reason but on prejudice. I should have insisted that disability was not some infrequently encountered exception but an integral aspect of the human condition. I should have pointed out that the majority of disabilities are acquired, not congenital. I should have stressed that being human is not a matter of either/or but of both/and, a spectrum of variation.
A Life Beyond Reason Page 11