Wednesday, November 10, 2010

A Life Beyond Reason

Many people will tell you about a book that you must read or a movie that you must see. The following article is, without a question, an article that you must read. It may be one of the most profound articles about the disability perspective that I have ever read.

Thank you Chris and August Gabbard.

A Life Beyond Reason

By Chris Gabbard

My son, August, has a number of quirks that distinguish him from the typically developing 10-year-old. He lives with cerebral palsy, is a spastic quadriplegic, has cortical visual impairment (meaning he is legally blind), is completely nonverbal and cognitively disabled, has a microcephalic head, and must wear a diaper. Moreover, he is immobile—he can't crawl or scoot around or hold himself up or even sit in a chair without being strapped in it. If someone were to put him on the floor and leave him there, he would be in the same location hours later, give or take a foot.

At home, in the eyes of my wife, Ilene; our 7-year-old daughter, Clio; and me, he seems merely a little eccentric, possessor of a few odd quirks, as I said. We don't think of him as being different; he is August, just another member of an already quirky family. Although he cannot play with his sister, she loves him. Without being prompted, she recently made pipe-cleaner wheelchairs for her dolls and rendered her wooden doll house ADA-compliant by retrofitting it with ramps. Now the dolls wheel freely in and out. For family bike rides, we have a specially built bicycle with a Tumble Forms chair attached to the front for him to ride in. I feed August his meals (he cannot feed himself), change his diapers, place him in the supersize jogger when I go running, and put him to bed. He and I have a good relationship: He laughs at my attempts at humor, which consist of making odd sounds or putting him face-up on the rug, holding his feet and legs up high, and rocking him swiftly back and forth. He seems to enjoy my company, and I most certainly enjoy his.

Outside of our home, my wife and I and Clio are constantly reminded of how unusual August must appear to other people. He elicits responses ranging from aversion to "the stare." We understand that his drooling stems from his cerebral palsy—the spasticity in the muscles of the mouth prevents him from being able to control saliva. No connection exists between mental disability and drooling, but, in the public imagination, this association has long been established.

In the eyes of some, August fits stereotypical images such as the comic-strip character Zippy the Pinhead. Yet likening my son, and other people who have microcephalic heads, to Zippy is about as relevant as likening African-Americans to blackface caricatures. In the eyes of others, August resembles Terri Schiavo, who, for the secular-educated, triggers the fearful response of "better off dead than disabled." Many such well-meaning people would like to put an end to August's suffering, but they do not stop to consider whether he actually is suffering. At times he is uncomfortable, yes, but the only real pain here seems to be the pain of those who cannot bear the thought that people like August exist. For many of those folks, someone with August's caliber of cognitive and physical disability raises the question of where humanity leaves off and animality begins. But that animal-human divide is spurious, a faulty either-or.

And then there are the Christians, who see in August a child of God. Given the educated alternative I just sketched out, that response seems a relief. Here in the South, they come up and say "God bless!," to which, depending on the occasion and the person, I sometimes respond, "This is my beloved son, in whom I am well pleased."

For almost everyone, August signifies one of the great tragedies that can befall a family.

After his birth, we ourselves lived in the tragic mode, but we soon grew tired of it. August brings us joy, as does his sister. Admittedly, the parenting commitment takes time from my career. And caring for August requires more time than does attending to Clio. Because August is a spastic quadriplegic, he requires the consuming regimen of daily full-body care.

Each morning I lift him from his bed, put him on a table, change his

diaper, and wash and dress him. Next I carry him up to the breakfast room, strap him into his wheelchair, hand-feed him breakfast, wash his hands and face, brush his teeth, wheel him out to the van, and drive him to his school. On regular school days, this morning preparation can take up to two hours to perform. In the late afternoon and evenings, I follow a similar routine: I drive through heavy traffic from campus to the only after-school facility in Jacksonville, Fla., equipped to handle children like August. Once there, I lift him into the van, bring him home, hand-feed him dinner (his food must be puréed and otherwise specially prepared so that he won't choke on it), find something to occupy him after dinner, and finally prepare him for bed. All of this activity takes two to three hours.

Often in the evenings, my wife and I hire people to help us so that we can get our work done and take care of our daughter. However, we cannot just hire the 15-year-old down the street to babysit: To take care of August properly, a caregiver requires at least a week of training. On my campus we have had good luck finding nursing and physical-therapy students, but we must pay more than the customary $7 an hour.

On the days that I teach and August's school is out of session, or his after-school facility shuts down, my wife and I must scramble to cover him. We cannot afford for my wife, a self-employed physical therapist and Pilates instructor, to give up a day of patients and clients. Other types of day-care facilities and the usual programs for typically developing 10-year-olds cannot accommodate a boy with spastic quadriplegia. I used to take him with me to the university, but he has now grown too large for that, and besides, he can be temperamentally unpredictable, making teaching difficult.

Just recently our family experienced an additional ripple of difficulty. My wife suffered a herniated disk in her neck, brought on in part by lifting August. An artificial disk was inserted, and, once she is fully recovered, the new disk will limit her to lifting no more than 50 pounds. Unfortunately, August now weighs at least 70. Because we moved from San Francisco to Jacksonville so that I could take my tenure-track job, we have no family in the vicinity to help us. Even worse, we have no rich uncles. As a result, almost all of the caregiving responsibilities have fallen on me. My wife and I have plans—but at present not the money—to remedy the situation: Procure a lift (for inside the home) as well as a van with a wheelchair ramp. (Yes, August has a state Medicaid waiver, and we have health insurance through my university, but when we make requests for his needs, the wheels turn slowly and sometimes not at all.)

In the meantime, I cannot leave the house for more than about eight hours at a time. Every day, morning and evening, I must be on hand to perform the routines. In sum, I cannot travel at all, even overnight. Hence, in the near future, I do not foresee going to conferences, traveling to do research, or applying for those tempting academic opportunities that entail going abroad, or, for that matter, going anywhere. In a sense, I am as stranded as Robinson Crusoe on his island. Just a few weeks ago someone in the university offered me an additional job with a small pay increase. However, the job required spending three days' training in Orlando, so I had to turn it down.

While August has limited what I can accomplish in my academic career, he also has broadened my teaching and scholarship. In order to explain how he has done so, I have to go back to my grade-school years, in Palo Alto, Calif. For the most part, I was a good student and a nice boy—nice, that is, except when I was bullying Peter, the lone kid in the class who had learning disabilities. Perceiving him to be the bearer of stigma, my fellows and I trailed after Peter, calling him idiot, moron, imbecile, stupid, and cretin. Our Lord of the Flies vitriol at least respected the boundary of not physically harming him, though our psychological abuse must have damaged him.

As I grew older, I was inspired by Socrates' statement that "the unexamined life is not worth living." Similarly, Aristotle's dictum that man is the animal having "logos," the power of reasoning, impressed me. The notion that the human being is a rational animal made sense, and I internalized it as a basic assumption, as I did Socrates' pronouncement. At San Francisco State University, I became intrigued by the Enlightenment. John Locke, David Hume, and Immanuel Kant fascinated me. Who would not want to be enlightened? Who in his or her right mind would choose in favor of a benighted past of superstition, ignorance, and blind faith in custom? I put my faith in reason. Eventually I obtained my doctorate at Stanford in 18th-century British literature—the age of reason: Anne Finch, Alexander Pope, Jonathan Swift, Samuel Johnson.

In sum, I grew up prizing intellectual aptitude—not that I am a candidate for Mensa—and detesting "poor mental function." Perhaps what helped make me revere intelligence was growing up in Palo Alto, with Stanford less than half a mile away and a number of Nobel Prize winners and famous and wealthy technology innovators all around me. People in my immediate vicinity had good brains, and that meant money, respect, and international influence.

Given, then, my nearly metaphysical attachment to intelligence, imagine my surprise when in March 1999, at my first child's birth, he failed to breathe and consequently suffered severe brain damage. The delivery was taking place at a prestigious teaching hospital, one that, I later learned, was attempting to reduce the number of Caesarean sections because a belief had emerged that American medicine was relying too heavily on the procedure.

Peter Singer
After his birth, as I entered the intensive-care nursery, I was deeply ambivalent, having been persuaded by the Princeton philosopher Peter Singer's advocacy of expanding reproductive choice to include infanticide. But there was my son, asleep or unconscious, on a ventilator, motionless under a heat lamp, tubes and wires everywhere, monitors alongside his steel and transparent-plastic crib. What most stirred me was the way he resembled me. Nothing had prepared me for this, the shock of recognition, for he was the boy in my own baby pictures, the image of me when I was an infant.

Eight months after the birth, a doctor commented, after viewing the results of a CT scan, that his brain looked like "Swiss cheese," it was so full of dead patches.

So from the start, I had to wrestle with the reality of his condition. Martin Luther held the opinion that, because a child such as August was a "changeling"—merely a mass of flesh, a massa carnis, with no soul—he should be drowned. And Singer reasonably would maintain that my son would not qualify as a "person," because he would have no consciousness of himself in time and space.

Days later, at the hospital consult, the doctors tried to explain what had gone awry but without yielding any information that might provide a basis for a malpractice suit. Because nothing significant was disclosed, my wife and I secured a lawyer to find out what had happened. A medical expert reviewing the records reported back that malpractice had occurred. In the meantime, we had discovered that the expense of caring for August over his lifetime would very likely exceed hundreds of thousands of dollars—a van with a lift, a lift in the house, thousands of hours of attendant care, lost wages, etc., all on the salaries of an educator and a physical therapist. Then the first lawyer mysteriously dropped out, and lawyer after lawyer looked over the records and passed on the case: A series of serious medical misjudgments had been made, but no single "smoking gun" instance of malpractice, certain to convince a jury, was likely to turn up.

My son's birth initially cast me into a wilderness of perplexity, doubt, and discontent. This was part of my wife's and my tragic mode. My formerly complacent assumptions began coming apart, and over the next few years they crumbled. I had seen the dark side of medicine—the quintessence of the Enlightenment—and firm ground slipped out from under me. Then came the culmination of the Terri Schiavo case, six years to the month after August's birth. That a Florida court would order the deliberate starvation and dehydration of a woman whose mental disability differed not that much from my son's struck me as what Gayatri Spivak terms "an enabling violation." Schiavo's death served as a turning point for me, and new interests, beliefs, and curiosities began to coalesce.

In my teaching and scholarship, I now interrogate some of the ideas that once informed my assumptions, and the questions that I ask fit awkwardly into the academic landscape. Is it really true that the unexamined life is not worth living? And is it accurate to say that only the possession of logos qualifies an entity for human status?

For me, Socrates' and Aristotle's monumental truths gave way to questions for which I still do not have answers. And yet I concluded that Martin Luther was wrong. I arrived at sufficient resolution to join a disability-rights group called Not Dead Yet and to pass out leaflets on its behalf when Singer spoke on my campus.

I do not know how far I wish to go in demystifying logos. After all, I would not want to encourage my students to make unintelligent choices, leave their potential unexplored, or write irrational essays. What I do want to do, though, is bring forward to my students, colleagues, and readers what should have been obvious to me all along: namely, that the Peters and Augusts of the world are as much members of our human tribe as any of us are.

Especially in an academic environment that rewards being smart, how do I broach the idea that people with intellectual disabilities are fully equal? We academics advance in our careers by demonstrating how clever we can be, and because so much depends on flaunting intelligence, it is harder for us than for most people to steer clear of prejudice. In posing my awkward questions, I have focused on teaching literature and disability-studies courses and writing articles that examine the rhetoric and representation of intellectual disability.

My commitment to bringing cognitive disability into the foreground in the humanities can be glimpsed in the way I teach Toni Morrison's short story, "Recitatif." I teach it every chance I get. Over all, the story illustrates how irrational frustration can well up even in sympathetic characters, compelling them to seek scapegoats. This story helped me begin to understand how my own troubles at home many years ago played a part in my abusive actions toward Peter. If I did not have August in my life, I probably never would have reconsidered my behavior toward Peter, or read Morrison's story carefully, let alone begun to teach it.

To admit how August has changed me is not to assert that what he has given me compensates for what he, my wife, my daughter, and I have lost on account of the poor decisions made by the hospital where he was born. There is no getting back what we have lost. Compensation is just a trope, and belief in compensation is as superstitious as belief in the medieval notion of correspondences. Besides, nothing can compensate for what all of us have had to give up. It would be better for everyone if August could run around and shout intelligible language.

And I agree with Rabbi Harold Kushner when he writes and talks about bad things happening to good people: August's disability does not form a part of "God's plan" and does not serve as a tool for God to teach me or anyone else wisdom. What kind of a God would it be, anyway, to deprive my boy of speech and movement just to instruct me? A cruel and arbitrary God. August's disabilities are not a blessing; but neither are they a divine curse. To traffic in a cosmic economy of blessings and curses is to revert to an ancient prejudice. Indeed, even though August's disabilities offer ample opportunity for public interpretation, they do not mean anything at all in and of themselves—they have no intrinsic significance. They simply are what they are.

That is not to deny that August, along with my daughter and my wife, is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being. A person such as Peter Singer well may conclude, reasonably, that I have become overpowered by parental sentiment. So be it. I can live with that. There are limits to reason.

Chris Gabbard is an associate professor of English at the University of North Florida. This essay is from Papa, PhD: Essays on Fatherhood by Men in the Academy, published this month by Rutgers University Press.


hstrick said...

1 Cor. 1:20 ...Has God not made foolish the wisdom of the world?

Chris, I have a 30 year old son, Joshua, whom you have described well in describing August. Their abilities and disablilities seem similar. I have gone through the grief process, as you have, and reached much the same conclusions.

Joshua deserves to live just because he lives.

But I will go a step further. He and August, as well as all of us, deserves to live because our worth doesn't come from any judgement of our fellow man's. Our worth comes from God. It isn't our ability to reason, our wealth, our beauty, our charm, our power, our productivity, or our goodness. Our WORTH to God is that we are His. Most of us have choices about what we do with our lives. God will ultimately judge us according to our abilities and our use of those abilities.

One ability we all have is the gift of compassion for each other. The Augusts and Joshuas of this world give us the chance to excercise this gift and become blessings to us as we grow to recognize their worth.

Do they burden us? Yes. Do they bless us? Yes. Society needs to understand this. Society needs to be exposed to the Joshuas and Augusts of the world.

Make sure the world always knows that August is just another part of your family. Let's TRULY celebrate Diversity!

Anonymous said...

Wow! That was an incredibly profound essay! It is unfortunate that much of humanity cannot see life from your point of view. May God bless you and your family.