It was the school’s dean of men, the head disciplinarian, Brother Patrick, a man in his late twenties, who propelled me down an unexpected path. His anti-Semitic views were well known, and he was aware that I didn’t agree with him, but I’d had no idea where he really stood. I thought he might have just been playing devil’s advocate. But one time in a private conference in his office (I was being castigated for some minor infraction), the subject of the Holocaust came up. In the midst of what had become a heated discussion, I pointed out (triumphantly, or so I thought) that the Nazis had lost the Second World War. To this he responded, shouting earnestly, his face red with passion, a vein popping in his forehead, “WE GOT RID OF THE JEWS, DIDN’T WE?” I immediately understood that he was no devil’s advocate but the devil himself. He wouldn’t have become viler in my eyes if he had suddenly sprouted horns. It had never occurred to me that a Roman Catholic man of the collar could be a rabid neo-Nazi. A lot of things can change a young person, and I remember many things that altered my course, but that meeting in Brother Patrick’s office stands out. It was a major blow to my faith.
The last straw came in my senior year when I encountered the problem of theodicy, the question of why God allows innocent children (and others) to suffer. One day a teacher, Brother Marco, a kind, elderly, and cultivated man (and definitely not an anti-Semite), brought an eight-line poem into class from Archibald MacLeish’s play J.B., which loosely tells the story of the biblical figure Job. This poem captured the conundrums of theodicy: If the universe was created and is governed by a good, just, and loving God, why does he let evil prosper? Why does he allow pain? Why does he permit innocent children to suffer? To my adolescent mind the whole thing seemed illogical. If doctrine didn’t make sense, God must be a fairy tale. My faith unraveled, and I lost my religion.
It was about this time that I watched Kenneth Clark’s monumental Civilisation, a BBC-produced thirteen-part television documentary series that aired on PBS. On our local affiliate it was constantly repeated, a favorite rerun. It outlined the history of Western art, architecture, and philosophy since the Middle Ages. I was particularly intrigued by the tenth episode, “The Smile of Reason,” which shed favorable light on the Age of Enlightenment.
One document Clark mentioned was “Was ist Aufklärung?” (“What is Enlightenment?”) by the late-eighteenth-century German philosopher Immanuel Kant. In it, Kant defined enlightenment as “man’s emergence from his self-incurred immaturity.” An enlightened person, he explained, should not allow traditions and institutions to do one’s thinking. Instead, one should learn to think for oneself through the exercise of reason. By extension, Clark explained, humans no longer would turn to God to solve their problems but instead would use reason, science, and technology to take control of their destiny. Religious dogma would give way to scientific fact. Through rational planning, humans could reorganize society to create a better order, fight famine and disease, and raise the overall standard of living.
Viewing Clark’s Civilisation several times, I decided that I wanted to be an enlightened, educated, modern man. I began reading many writers who were anticlerical if not antireligious in their views, and I soon followed suit, becoming a freethinker. I remember the Sunday morning when my mother climbed the stairs to my bedroom, knocked, and came in to ask if I was going to church. “Mom,” I answered, “I don’t believe in that stuff anymore.” She immediately burst into tears. In retrospect I wish I had been more empathetic: this was a major blow for her. She and I never talked about my church non-attendance again.
I was a skeptical kid but far from cynical. In fact, I was enthusiastically idealistic and believed in the good of humanity. The crucifix came down from my bedroom wall and up went a black-and-white drawing, Don Quixote de la Mancha, by Pablo Picasso. The hit from the musical Man of La Mancha became my anthem—“To dream the impossible dream . . .”—and I went hunting for windmills.
After earning a BA at San Francisco State University, I was off on a new path as an atheist, a confirmed materialist (nothing exists except matter), and a devotee of reason. I refused to accept anything as true that couldn’t be verified. Facts were all that mattered. The only faith I had was faith in us, humankind. I believed in the power of science and in the attainment of perfection through rational action. Had I lived at the end of the eighteenth century in France, I could have become a Jacobin and an ardent follower of the Cult of Reason—the Religion of Man. This was the atheistic creed established shortly after the 1789 revolution to replace Roman Catholicism. I was for liberté, égalité, et fraternité. I was for the perfection of humankind. I was for progress.
At the same time, I had come to believe that loving and wanting love were weaknesses to be overcome by force of will. Only weak-minded people needed love. You couldn’t pull the wool over my eyes. Instead of becoming a lover or a saint, I was devoting my life to Truth. I would be a person of integrity. I aspired to be a tragic young man of principle.
After working for several years in the family’s retail irrigation-parts business, I returned to San Francisco State to obtain an MA. I took several courses with Dr. Beverly Voloshin, one of which covered Restoration and eighteenth-century literary and philosophical texts. In that class, Voloshin assigned large portions of John Locke’s 1690 An Essay Concerning Human Understanding. Never having read Locke before, I found him fascinating. Locke’s Essay spoke to me, putting into words the principles of classical liberalism, which emphasized the rights of the individual—a universal rational human figure. These principles contributed to forming the basis of the rights tradition of autonomy that became an essential aspect of both Enlightenment and modern thinking. I became a Lockean fundamentalist, which is to say, a libertarian. Every individual, I was becoming convinced, could master his or her own destiny. If each person put his or her mind to it, anything was possible. Everyone could be independent and free, strong and self-reliant, standing like a saguaro cactus in the dry Arizona desert.
In Professor Voloshin’s class I met Larry Buchalter. Larry was a person living with cerebral palsy who got around in a motorized chair, using a long white “unicorn” stick protruding from the front of his helmet to press buttons on a control panel in front of him. Thin, whiskered, wearing glasses, and probably in his late twenties, he was associated with the organization founded by disability rights pioneer Ed Roberts, Berkeley’s Center for Independent Living, about which I knew nothing at the time. Larry rode BART from Berkeley, then transferred in San Francisco to a Muni street car, the M line, to reach the campus. In class he was extremely critical of Locke’s philosophy, but I could never quite figure out what his objection to it was. One evening midway through the semester he called me. When I realized who it was I became petrified—it was as if Frankenstein’s monster had dialed my number. He wanted to know if I would join him before class for coffee at the student union. Since we both were reading the same material, we could discuss it before heading into class. I didn’t want to hang out with someone like that! I declined curtly and hung up. I couldn’t have gotten off the phone any faster if something in my apartment had suddenly burst into flame.
Clio would crawl all over August’s body before she started walking. He would lie prostrate on his Tumble Forms wedge, and from his expression I knew he liked having the rug rat crawl over his legs and back and head. It would excite him and make him smile and titter and kick his feet. He would even scream with delight. She called him Ba Ba.
After Clio began walking and as she grew older, August liked the way she would speak to him. Sometimes she would whisper into his ear. And sometimes she would put her arms around his head and give him kisses, and these actions would make him ecstatic.
“All happy families are alike; each unhappy family is unhappy in its own way”—that is the way Leo Tolstoy’s novel Anna Karenina famously begins. As a family we weren’t unhappy, at least with each other. But we were a family living life in its own way. Over time our world of personal interactions with others became c
onfined to that of August’s support system—therapists, doctors, nurses, coordinators, suppliers of adaptive equipment, and hired caregivers. As Roy Ellis notes in one of the items of his 30 Signs You May Have a Severely Disabled Child: “You no longer have friends, just social workers and case managers.”
Many friends dropped us because it was too hard to socialize with us and our challenging kid. And having a child like August made meeting new people hard. Finding friends became difficult because, to borrow wording from memoirist Vicki Forman, a “vague air of loneliness and desperation [began] surrounding us.” No one else except for parents with kids like ours could really understand what we were going through. And usually these parents were too busy taking care of their own high-maintenance children to have much time for socializing. So we became isolated, a family marooned on a desert island. By virtue of there being no one else already present to vote us off, we were the survivors. We kept waiting to hear Jeff Probst of the reality TV program Survivor say, “The tribe has spoken. It’s time for you to go.” But there was no tribe, just us.
People who believe that a robust welfare system exists in a number of states—that is, one with adequate public assistance and support for families who have children such as ours—are likely to be surprised. Once in Florida, we discovered that there would be no public support whatsoever, just a waiting list. When we arrived in July 2001, the state’s Agency for Persons with Disabilities (APD) put August’s name on a waiting list to receive the Medicaid waiver (what he had had in California, the Medi-Cal waiver). Ahead of him were thousands of other children with severe impairments, and the wait for him to become eligible for desperately needed services was likely to extend a decade or longer. The estimate we received was that, at the earliest, he would start receiving the waiver in 2011. In the meantime, no government support services would be available. On account of their taxing and funding priorities, the state’s governor and legislature had opted to throw families like ours under the bus. We were completely on our own.
“We’re fucked!” This was how Ilene eloquently summed things up. And she was right. On account of August, we would be wiped out. What did this translate into? Just as friends, neighbors, and family had warned us, Ilene and I regularly had to forego pursuing lucrative career opportunities. For Ilene, opening her own physical-therapy practice was out of the question—the amount of time required to successfully run a small business was not available because of August.
As for me, I was a scholar interrupted. Writing a book (something I needed to do to earn a promotion) while serving as the primary caregiver for a child with extraordinary needs was now an unrealistic expectation. To advance in most any career, be it in business, law, medicine, or academia, a person has to be willing and able to work sixty hours a week, sometimes more, at least at some points, and that would be impossible because of August. So we were both sidelined professionally. The problem boiled down to our inability to increase our earnings at the very time his already substantial medical expenses were growing even greater. We couldn’t take on second jobs because his needs required us to be at home; we could barely work the jobs we already had. The increase in financial pressure while being unable to alleviate it was like discovering that the roof has burst into flame but the garden hose has no water to put it out. And so, even though we were both working full time, bankruptcy was in our future. Where before I had often just felt anxious, I now began to have panic attacks. What the hell were we going to do?
Whenever we mentioned to people the financial challenges associated with caring for August, something we tried to avoid doing, the believers in self-reliance would give advice that almost invariably started with the words “why don’t you just.” Why didn’t we just get a second job, work more hours, organize a community 5K race, et cetera? From the outside, it must have all looked so easy. We would then have to explain that the amount of time required to care for August meant that no hours remained for implementing whatever it was they were suggesting, unless we were willing to leave August unattended at home for long periods of time. If we had done that, Florida’s Department of Children and Families would have removed him from our care.
We had no family nearby to help, so Ilene and I had to hire young people and pay them out of pocket for respite care. We never wanted to hire help to care for our child, but we needed assistance in the evenings so that we could get our work done. Hiring helpers, however, meant that we were caught between Scylla and Charybdis: we couldn’t afford to hire help, but we wouldn’t be able to keep our jobs if we didn’t hire help.
We also couldn’t employ just anyone, such as a teenaged neighborhood babysitter, the usual recourse for the parents of typically developing children. A caregiver for August required a higher level of maturity and at least a month of intense training before Ilene and I could leave the person alone with him. A matter so seemingly simple as transferring him from his wheelchair to his bed could injure him. Similarly, feeding him had to be performed with patience, skill, and caution so that he would not choke on or aspirate his food or drink (and risk coming down with pneumonia).
I had good luck finding caregivers through the University of North Florida. Nursing, psychology, and community health majors worked out particularly well. On a few occasions, candidates for the job came to the house for an interview and were so visibly disturbed by August’s circumstances that we never heard from them again. But on the whole, the women (only young women applied for the job) were wonderful people. Over the years, Ilene and I built a team of what the philosopher Eva Feder Kittay would term dependency workers. One member would drop out in order to move on to the next phase of her life, and a new recruit would come in to take her place. Some of them become permanent friends.
Families with children who are healthy and typically developing experience a privilege of which they are not aware. Those families with children who are disabled or suffer from serious health problems constantly live in dread, always waiting for the other shoe to drop. Parents can barely think beyond the here and now when they know that they are only one phone call away from a crisis that will engulf them, one involving not just health but also financial status. The repercussions of the latter could be extremely serious. Ilene and I didn’t want to lose our house. Over the years we had to refinance it twice to cover August’s medical expenses. Along the way, we were unable to put anything aside for retirement beyond my employer’s defined contribution program.
Once Clio asked if we all could embark on a Disney-themed cruise. She wanted to escape being marooned on our August-centric island, to sail away. I understood how disappointing this must have been. Sisters and brothers of kids with severe impairments have it hard. She had to surrender a great deal on account of August. Ilene’s and my minutes and hours with her brother took time away from her. Spontaneous jaunts for ice cream or pizza were rare because getting August ready even for a short trip took a lot of time. Snuggling on the couch watching television as a family occurred infrequently: August had needs. She never went to Disney World in Orlando, a mere two and a half hours away, at least not with her own family. We couldn’t take August with us because he didn’t travel easily, and we couldn’t afford to hire someone to watch him while we were away for that long. The same went for going to the ocean. Even though it was only a thirty-minute drive to Atlantic Beach and an hour to the shore at Guana River State Park, we had to pay someone to watch him while we were away. There was nothing for him to do at the beach anyway, and rolling him in his wheelchair through the sand was impossible.
Often I sensed that the connection between my daughter and me had become strained. In the evenings when she was younger and had asked me to play with her, I had been forced to say no over and over because I’d had tasks to perform for her brother. After days of rejection, her defenses had gone up, and she had begun to ignore me, not deliberately but because she was too young to know how to put her hurt feelings into words.
But despite all of the deprivation, Clio never stopped lov
ing August. She always remained proud of him, gave him hugs and kisses, sang to him, and exhibited toward him the most expansive, inclusive spirit. One day, years later, when she was barely twelve, she put on bright red lipstick and planted a lipstick kiss on his cheek. In a photo documenting this, he is grinning with the prize of love prominently displayed. Yet the picture is more complicated. We learned in later years that her response to the situation was extremely complex. Subtle psychological challenges arose with regard to having a sibling with so many impairments. Eventually she would have to work them out by meeting with a therapist.
Worry oppressed me almost night and day regarding what would happen to August after Ilene and I died. Clio would have to take over. And this greatly concerned me: why should her life be circumscribed by having to care for her sibling? She ought to be able to lead her own life. Because of the drama that would unfold someday—of Clio having to act as August’s guardian—I began to think that it was absurd to build a society on the fantasy that everyone should depend solely on oneself. It was delusional to think that we could each make it on our own. Alexis de Tocqueville describes the shortcomings of individualism in writing about Americans in his 1835 Democracy in America:
They owe nothing to any man, they expect nothing from any man; they acquire the habit of always considering themselves as standing alone, and they are apt to imagine that their whole destiny is in their own hands. Thus not only does democracy make every man forget his ancestors, but it hides his descendants and separates his contemporaries from him; it throws him back forever upon himself alone and threatens in the end to confine him entirely within the solitude of his own heart.
I became awakened to another viewpoint, that of a seventeenth-century alternative to John Locke. In “Meditation 17,” John Donne writes, “No man is an island, entire of itself; every man is a piece of the continent, a part of the main.” Donne’s meditation gave me the sailing directions I needed for departing our island and traveling to the mainland. So we left our small island, the rock of independence, and embarked for the continent, the land of interdependence.
A Life Beyond Reason Page 8