But, most importantly, I should have said, “How dare you suggest that my son is less than fully human.”
When I was a young university student, Hamlet’s famous statement to his friend puzzled me: “There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy.” Back then I had believed that philosophy was the highest order of human thinking. How could it leave anything out? That night in November 2005, though, I realized that philosophers like Singer could not dream of August in their philosophies. If more of them were going to include him in their dreams, they first would have to imagine him in their waking hours.
Philosopher Martha Nussbaum’s book Frontiers of Justice would not come out until the following year. In it she would articulate the position that I myself was coming to, based on my interactions with August. Speaking with regard to the daughter of fellow philosopher Eva Feder Kittay, Sesha, whose condition is not dissimilar to August’s, Nussbaum writes, “The fact that she has a human body and is the child of two human parents plays a large role here.” But more importantly, she states,
To the extent that we do think of Sesha’s life as a human life, and I think we are not deceived when we do, it is presumably because at least some of the most important human capabilities are manifest in it, and these capabilities link her to the human community rather than some other: the ability to love and relate to others, perception, delight in movement and play.
Nussbaum seems more inclined to view humanity as a spectrum of variation, and so, by her standard, August and Sesha occupy a place on it. Singer does not accept this view. For him, full humanity is a matter of a binary opposition: an entity is either fully human or it is not at all. The linearity of his thinking amazed and continues to amaze me. There are no shades of gray, no gradations between one extreme and its opposite, no variability. For him, it is a matter of black or white.
It was a hot Saturday morning in late July 2005. Clio was three and a half years old, and August was six. He was wearing an orange Reese’s Pieces T-shirt and beige shorts. Two hundred or more people had assembled in tree-shaded Hemming Park across from Jacksonville’s city hall. These were disabled people, activists, and supporters of the disability rights movement who actively fought against disablism. One of its slogans was “Nothing about us without us”; these words meant that disabled people want to have a major voice in the decisions that are made in their name and that impact their lives. Today would be our pride march, Crip Pride.
Clio, Ilene, and I were there as supporters, as temporarily able-bodied people, and August was present as one of the disabled. We all had come together to celebrate the fourteenth anniversary of President George H. W. Bush’s signing of the Americans with Disabilities Act (ADA).
Before the march began, our family was going to meet August’s new friend, Ronnie, a young man living with cerebral palsy. This was an important moment because August hadn’t had any friends. Ronnie was considerably older, and he reminded me of Larry Buchalter from Dr. Voloshin’s class at San Francisco State. Buchalter returned fully to my memory, as did my curt dismissal of him on the phone. But this madeleine dipped in tea did not taste sweet, for I now saw Larry in a different light. There was no escaping the conclusion that I had been a bigot. Back in 1989, I could not imagine what life was like from his point of view. His critical comments about John Locke indicated that he had a penetrating mind, and a conversation at the student union about this philosopher would have been edifying. At the time I didn’t consider how much effort Larry had to put into activities that are easy for most people. And I didn’t ask myself what opportunities would be available for him once he earned his degree. It didn’t occur to me that people with serious impairments who are successful in college often don’t find work once they graduate.
These concerns and insights now transferred to Ronnie. He had gone to school his whole life at Mt. Herman, but the preceding year, at twenty-two, he had aged out. He shouldn’t have been enrolled there at all because every other child in the school lived with severe cognitive impairment, and Ronnie was reputed to be brilliant. Duval County Public Schools (the local school district) probably had placed him there because he was a spastic quadriplegic. Provision should have been made for him: a one-on-one aide should have been assigned, and he should have attended one of the district’s magnet schools for gifted children.
After Ronnie had aged out, the Mt. Herman staff found a job for him at the school, part of which entailed working with August. Our son had become one of his favorites, and I was eager to meet this young man who liked him so much.
In Hemming Park, we quickly picked him and his mother out of the crowd. Unkempt dark hair against pale skin, Ronnie was small and slender, his body slightly curved in his power chair. His limbs were thin, his chin and upper lip were heavily whiskered, and his expression was gentle. Although he could hardly move, I could tell from his lively glance that he was busy taking everything in. The following year, after spending six weeks in the hospital, Ronnie would die of pneumonia. But that was still in the future. Ronnie on that day of the ADA march was still very much with us, and it was a fine day to be alive. I took a good look at him. He had an Adam’s apple, a man’s jaw, and broad shoulders. These were foreshadowings, for up until this moment I hadn’t thought at all about what August might be like once he became a man. It shocked me that in a few years I would have to start shaving him.
When the march got underway we advanced southward on Laura Street. It was hot, and we needed hats now to provide some shade. While I pushed August in his Zippie manual wheelchair, Ronnie motored alongside. August laughed at the things he said.
Clio was excited by what she called “the parade,” for that’s what it was for her. By turns she held her mother’s hand, helped me push August, rode on August’s lap, and hopped, pranced, and skipped along. Ahead of and around us was a sea of humanity. There were the rolling quads. There were wheelchair folks. There were people striding confidently with white canes and propelling themselves jerkily on account of cerebral palsy and walking with service animals beside them.
After the march, when we returned home, Clio constructed pipe-cleaner wheelchairs for her dolls. She also made her wooden dollhouse ADA-compliant by retrofitting it with ramps. The dolls were able to wheel freely in and out of the little rooms. Crip Pride had been brought home to the dollhouse.
VII
DURING THE MIDDLE AGES, THE WORD MONSTER referred to something that was unintelligible. (Here I am drawing on David Williams’s book, Deformed Discourse.) The monstrous was not so much something frightening like Godzilla or the Thing in the Crate as something incomprehensible and awe-inspiring, a wonder or prodigy. As such, it served to signify the inscrutable nature of God. It was a sign of his mysterious ways. However, just before and during the Enlightenment, monster began to stand for something else, for a radical, terrible, and frightening deviation from the typical or expected.
For many people who encountered August but didn’t get to know him well, he was a monster in the latter sense. He was a being so exaggeratedly different that he made them feel uncomfortable. There were parents in Jacksonville who didn’t want their children to come over to our house to play with Clio because a boy in a wheelchair lived inside. It wasn’t just a Jacksonville problem, of course. Some of the affluent parents whose children attended the Child Care Center at Presidio Heights—such as Rachel’s mother—had not wanted their children to associate with August. Still a child, he had been stigmatized. To them he was Boo Radley, someone to protect their children from.
For those who did come to know August well, he was a monster in the former sense: he was inscrutable. This inability to fathom him, to solve his mystery, eventually would bring to mind questions not so much about him but about the nature of meaning itself. Looking into his eyes represented gazing directly at the mystery of the universe—at least this was true for me and for a few others. To the extent that he would provoke large questions, he became a child signifying the unfa
thomable cosmos. This is not to say that his disability conveyed a meaning but rather that it disrupted meaning. He exposed the limits of meaning, the illusory nature of the meaning-making enterprise. His disability compelled me to stand in awe of everything, of a universe stripped of the significance that we human beings impose on it.
What would happen if I were to resort to John Keats’s “negative capability,” leaving off irritable reaching after fact and reason and instead pondering the totality of everything—the earth and moon and stars and, beyond these, the infinite and the eternal, without a ready set of answers? Would this be to enter into a truly spiritual state?
Over time I gained the beginnings of an answer. Several times while changing August’s diaper, I became entranced. I had the weird sensation while looking into my son’s hazel eyes that I was staring into the face of God. Each time this would feel like it was going on for as much as half a minute, but it probably lasted no longer than a green flash at sunset. As a nonbeliever, I didn’t know what to think. And I still don’t. Someone with my education and philosophical orientation and profession should have no truck with mystical flights of fancy. Was I losing my mind?
August’s daily routine was sometimes tedious and always time-consuming. Attending to a hyper-maintenance child could be a grind, and transporting a quadriplegic, even a miniature one, could be difficult. You might think that fathering such a child would supply an atheist dad with all the more proof that there is no God. These face-of-God moments may have been the strangest surprise of the entire adventure. Despite the monotony and incessant worry, these rare moments while looking into his eyes provided the most intense apprehensions of life I had ever experienced.
Let me put it another way: at times my son would be lying supine on his extra-large changing table, and I would suddenly be “hanging ten,” as the surfers say, tube riding within the barrel of a breaking wave. Like the ones at Banzai Pipeline, the water would form a moving cylinder as it broke, its curl overhanging me. I would be hurling lengthwise beneath it, headlong through the tube, surrounded by a violent swelling upheaval of windmill-wings blue. At the end of the tunnel toward which I was speeding would be a small bright circle of Laughing Orange.
These colorful reveries were exhilarating, but my skepticism would kick in after the wave collapsed. Probably all this psychedelic potency was just intense fatigue exploding within me, wires in the brain crossing, the material consequence of being chronically sleep-deprived and stressed.
But what if it was something more? If God exists, was this one of his little jokes? Was he giving me a vision while changing a poopy diaper? I had heard Christians say that God uses the difficult, awkward, and silly circumstances of our lives to teach us about grace and redemption. Was this what was happening?
Whichever it was, the cosmos or craziness, I found myself to be an atheist who was already well along the path of a spiritual journey. There was no turning back now. But even if whatever it was I experienced turned out to be something more, something transcendental, I didn’t intend to start proselytizing. I was not going to found a religious sect based on it. If I did, distributing the communion sacrament for my new church would have been particularly noisome.
Lucy Grealy writes, “The general plot of life is sometimes shaped by the different ways genuine intelligence combines with equally genuine ignorance.” Her words about intelligence and ignorance combining to shape events apply here. Although I grew up in Silicon Valley and imbibed its ideology like mother’s milk, I have become skeptical regarding high technology on account of what happened, which I will speak about now. What I took to be the cutting edge turned out to be the bleeding edge.
In 2003 Dr. Achilles Joyce was recruited to run the first pediatric neurosurgery program in northeast Florida. A multimillion-dollar endowment made founding it possible. The internationally recognized Dr. Joyce, originally from Argentina, had been practicing medicine for four decades, much of that time at a teaching hospital associated with the University of California. Having recently retired, Joyce had accepted an offer from the medical school of a nearby university to come open a clinic at Bensalem-Salomon Children’s Hospital (a pseudonym).
Achilles Joyce headed to northeast Florida to begin building a program, recruiting other pediatric neurosurgeons from around the nation. His name and reputation were the attraction. And this is how the area’s first Relaxanoid implantable infusion pump program came into existence Manufactured by Hippocrates, the Relaxanoid pump was a piece of science fiction wizardry come true.
One of the physicians Dr. Joyce recruited was a physiatrist specializing in spasticity management. Spasticity, by the way, is the major component of cerebral palsy. At Dr. Joyce’s behest, Dr. Lisa Sandemelir moved from the Midwest to northeast Florida with her husband and two small children. Simultaneously vivacious and relaxed, Sandemelir smiled easily, and her demeanor set us at ease. Only years later did I realize that she was the lure.
Ilene and I first met with her in January 2008 at a clinic in a tall building adjacent to Bensalem-Salomon. August was nine years old at the time. To get him onto the examining table, I first I had to scoop him out of his wheelchair. She had me lay August face up on a cushioned examining table with a white towel under his head and body. “As he grows older,” she informed us as she measured the range of motion in his left leg, “his problems are going to become more complicated and harder to manage.”
She laid the left leg down and moved to the right one, flexing it at the knee, and said, “Increasing spasticity will bring on more muscle tightening.” August cooed with pleasure as she manipulated him. Watching her work with our son, I could see that she was gentle and kind. These qualities impressed me. They made me trust her.
August was beginning to experience painful charley horses when sitting in his wheelchair. He would suddenly cry out and push up from the foot pedals with both legs. Over the years, since the age of five, he had undergone several surgeries, one of them an adductor release. He had briefly been considered for a rhizotomy (a neurosurgical procedure that selectively destroys problematic nerve roots coming off the spinal cord) to relieve the symptoms of spastic cerebral palsy. This procedure was ruled out because his physicians concluded that he was not a good candidate. They didn’t explain why.
As a course of treatment, Dr. Sandemelir prescribed powdered Relaxanoid to be taken orally with his meals, and this helped with the leg cramping. She also started him on a regimen of periodic off-label Botox injections into his upper legs, hips, thighs, and lower back. The two worked extremely well in relieving August’s spasticity. For six to eight weeks the shots would alleviate the muscle spasms, but then the effects of Botox would begin to wear off. I then would have to take August back to Sandemelir’s clinic for a new set of Botox injections. These visits occurred once every three months. Taking the injections didn’t bother August. He didn’t cry about receiving them because, unlike typically developing children, he didn’t know that the needle was coming. For him the process was over as soon as it began. With each injection, he might briefly wince or purse his lips, but he never cried.
During a clinic visit in November 2009, Dr. Sandemelir changed the tenor of her medical advice. Four of us were present at this visit: the doctor, August, me, and a short, stocky, red-faced, middle-aged man—a Hippocrates company rep. He introduced himself and shook my hand with a grip that was firm and steady. I would see him a few times in the years that followed. Because I could never remember his long name, I thought of him as the Yellow Man because he always wore a pale yellow dress shirt.
Dr. Sandemelir told me that afternoon that she had two effective methods in her tool kit for treating children with spasticity. They were the periodic off-label Botox injections with Relaxanoid daily by mouth, the regimen we were pursuing, and alternatively an implanted pump. The pump was an astonishingly high-tech innovation. The combination of Botox injections with oral Relaxanoid was the opposite: it was effective but low-tech. In the years since, I have come t
o appreciate that the term low-tech carries pejorative connotations. The online Urban Dictionary lists these hashtags for its slang use: #stupid, #slow, #idiotic, #dumb, and #dim, all of which point to one of modernity’s fundamental prejudices.
During our conversation, and with the company rep present, Dr. Sandemelir began nudging me to abandon the injections in favor of implanting a pump. Nothing in August’s medical profile had changed requiring the transition, but the ease of the pump was what she emphasized. I wouldn’t have to bring August into her clinic every three months for the next set of shots.
In her presentation she was upbeat, her voice inflected with optimism. The issue, she explained, was that when Relaxanoid is taken orally, most of the drug stays in the bloodstream. The targeted area for the drug was the cerebrospinal fluid (CSF) that bathes the spinal cord and the brain. When taken by mouth, only a small amount of it reaches the CSF, even at very high doses. Additionally, high doses of Relaxanoid are toxic to the body’s other organs, such as the kidneys and liver.
Speaking in a pleasant tone and projecting a “can do” attitude, she said, “The pump bypasses these organs by injecting liquid Relaxanoid directly into the cerebrospinal fluid.” As she went on explaining the benefits of the device, I could tell that she really wanted Ilene and me to give up relying on Botox injections to manage August’s spasticity. She was pushing the pump.
A Life Beyond Reason Page 12
