• December 22, 2014

A Life Beyond Reason

A Life Beyond Reason 1

Matt Stroshane for The Chronicle Review

Chris Gabbard, an English professor at the U. of North Florida, at home with his son, August

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.

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.

Comments

1. daviskeaveny - November 08, 2010 at 08:57 am

When one of my sons was born with Downs I recalled my Father's best friend. His son, a brilliant lawyer, was in an accident that caused permanent brain damage. Although he was as handsome as ever, once talking with him you understood that there was something severely wrong. He was divorced so the only people that could take over were his elderly parents. From this lesson I learned two things: sometimes it is better to look different, that way people are not shocked when you are not as smart as they think you should be. Matter of fact, sometimes they are shocked when you are smarter than you look. Second is that once you are a parent you are ALWAYS a parent. I came to feel I was blessed with a son that had Downs. He looked the way he should with the syndrome so I never had to explain and I knew from the beginning that he was my job the rest of our lives.

2. keis8427 - November 08, 2010 at 09:09 am

What a beautiful and thought provoking article. Thank you!

3. das710 - November 08, 2010 at 09:35 am

Excellent article--written without bitterness--that begins to bridge the divide between those who stare and wonder (me?) and parents of children with disabilities.

4. anonscribe - November 08, 2010 at 02:38 pm

This reminds me of a recent interview Krista Tippett did with Dr. Xavier Le Pichon for On Being (public radio):

"weakness is part of a system that in fact is alive." He goes on to say that it is a distinctly human trait to put the weakest at the center of social life. They've found Neandertal remains that prove disabled members were actually cared for at great effort and reached old age.

Perhaps a more fitting definition of "humanity" is placing those like August at the center of our care and attention instead of exiling them to the margins out of fear or callousness. We bury our dead; we care for our weak.

5. mtboots - November 08, 2010 at 05:52 pm

Beautiful article, thoughful comments.

6. zbiki2000 - November 08, 2010 at 06:52 pm

I've tried for most of my life to explain to people how my disabled sister made my family what it was, deeper and warmer because it was centered on her care and love. The downsides were there too, but I've never explained as well as this article has -- thanks for opening my heart again to remember and tell Pam's story.

7. august - November 08, 2010 at 08:59 pm

Wonderful article, thank you. I will use it in my courses and share it with my colleagues.

8. janeer1 - November 09, 2010 at 08:07 am

May I first say that your son is absolutely gorgeous!

As the mother of a now-24-yr-old with muscular dystrophy, who too had to be resuscitated at one of the nation's "greatest hospitals" by virtue of the same "smoking gun"(but is cognitively fine if not physically, and cannot walk), you have captured what I feel: my son is my beloved son, and I would not trade him for the world (although of course I feel the loss--for him--of not being able to do what other kids could do, and of having himself to confront many of the reactions you describe). And also may I say how lucky he is to have a father as loving and giving as you. My son did not have someone like you there, just me. I am happy for August, and for your wonderful family. There are, indeed, limits to reason. Love conquers all.

9. philostitute - November 09, 2010 at 11:01 am

This is a lovely piece illustrating that love and life are about more than intellectual achievement, reciprocity and money-making. As a philosopher who has wrestled with Western rationalism, I loved your analysis of Singer and the cold exclusivity of reason as the prized possession for all. While intelligence and reason are the currency of education and research, they do not constitute all that is important in life. We workaholic academics could learn much from your essay.

In some Eastern traditions, August would be a "guru of compassion" because he elicits this quality. As such he would be revered and appreciated for his unique capability to awaken joy. Your essay illustrates how lopsided we've become and yet our reason can't stop wars, improve the life of impoverished persons or heal everyone. Thanks for this reminder.

10. rosmerta - November 09, 2010 at 11:11 am

Thanks so much for sharing this. A callous and fearful world needs to hear your message.

11. nadinne - November 09, 2010 at 11:37 am

This is my first time to post: I had to tell you your reflection is devastatingly beautiful. My deepest thank you for a reading that contributed to the expansion of my humanity.

12. gmanuel - November 09, 2010 at 12:35 pm

I hope never to forget what you've taught me today about love, commitment, and as you say "the limits to reason." Thanks for living this lesson every day!

13. dank48 - November 09, 2010 at 03:22 pm

As you say in this beautiful and inspiring essay, for some people, "someone with August's caliber of cognitive and physical disability raises the question of where humanity leaves off and animality begins." I have to agree that someone like August does raise this question, but perhaps not in the terms in which it's usually framed. Not August's humanity or animality: ours.

14. dank48 - November 09, 2010 at 03:28 pm

In this beautiful, inspiring article, you mention that for some, a person with August's degree of disability raises the question of where humanity leaves off and animality begins.

Certainly, but in my opinion the question raised by August and those with such severe disabilities has nothing to do with their humanity and everything to do with ours.

Thanks from the bottom of my heart.

15. swiley - November 09, 2010 at 06:09 pm

The author's ability to discuss the circumstances of his son's and family's life with such equanimity and acceptance is both inspiring and humbling. Thank you for an incredibly powerful essay.

16. nels4732 - November 10, 2010 at 08:42 am

Thank you the gift that this article is for all of us who have read it.

17. mhick255 - November 11, 2010 at 08:43 am

I have been humbled and challenged by this essay. Thank you, Dr. Gabbard, and thank you, August.

18. profsuperplum - November 11, 2010 at 08:17 pm

This is beautifully written and brilliantly argued. August continues to look so much like you, Chris, and you four have become the definition of a family, which is something that is beyond reason in the most important ways. Thank you, Chris. -Robin

19. supertatie - November 11, 2010 at 09:23 pm

I am moved to tears by the depth of love and rationality and profound humanity in this article, and - thank you! - in the comments of those who have posted.

A special thank you to Professor Gabbard for dispelling what I have always believed to be a misunderstanding. I share his assessment that God's "plan," as it were, is not to be found in the sorrows and losses inflicted upon us (often by others), and believe it to be found, instead, in the strength we find to deal with them.

I particularly love the title he chose, and wonder if he meant to evoke the words of Sir Thomas More. Toward the end of the play, "A Man For All Seasons," More's daughter Meg begs him to lie and take the oath commanded by the king, rather than be beheaded for treason. When More refuses, Meg insists that, as a good and decent man, he "had done as much as God could reasonably want."

To which Sir Thomas replies, "Well, finally, it isn't a matter of reason. Finally, it is a matter of love."

20. pertinax - November 12, 2010 at 05:27 am

This is a very moving article. My best wishes go to you and your family, Professor Gibbard.

21. artsfbb - November 12, 2010 at 06:26 am

I find this article touching and profound. But I also find it, in part, profoundly dissonant with important aspects of my own experience, having a nephew who is much like August, and who is now age 20. My difficulty centers on the second paragraph, which is intended, of course, to come as a shock (albeit positive) after the first paragraph's account of August's life and condition. The second paragraph describes a mode in which the father/author and other family members look on a child with severe cerebral palsy as merely a little eccentric, a quirky member of an already quirky family. At one level, I certainly want to affirm this. It can exemplify the height of generosity of spirit, and it reflects the way the child is indeed a remarkable blessing (as my brother says of his own child with similar traits). And surely it is a gift to be able to arrive at those feelings, which may in fact may be the central way this family has found to live and thrive together. But it strikes me as deeply disturbing if this approach is intended to provide an overall approach to loving "beyond reason." Because, at least for some of us, love also needs to face the truly tragic, ongoing losses that are more a part of some lives than of others--and not to disguise what is lost and suffered (even if somehow to be lived in and through). I say that not only because of recent tragic loss in my own life, but also because my nephew with cerebral palsy has apparently suffered a heck of a lot more than August, for his whole life. And there is simply no way that even August's life can adequately be characterized as simply another quirky version of what everyone else experiences. Fortunately, the article goes deeper as it moves along. But Americans in particular--and it seems human beings in general--often think that the best answer to life's severest challenges is finally to deny that they make any difference at all. That is not the overall impression I get from this touching essay, thank goodness. But the second paragraph comes perilously close to that kind of denial, and I almost stopped reading at that very point. I'm glad I didn't. But I'm still not sure I can bring myself to share this article with my brother and his wife, who in caring for their own son with similar traits have experienced (and witnessed in his life) misery and loss of a kind this article doesn't begin to acknowledge. Those who suffer may indeed be blessed (as I personally affirm), but the blessing doesn't disguise the reality of their (and our) suffering, whatever our eventual capacity (as many religions and philosophies would hope) to find meaning and love in and through that.

22. texastextbook - November 12, 2010 at 06:53 am

It isn't August whose condition you're here to appreciate, Mr. Gabbard.

How would one "teach" disability, or, for that matter, ability? It would be like passing to a child the story of Christ and the money changers, and knowing that the child may well spend his entire life believing that the evil was the money (and not, as you and I know it to have been, the changing, or the attempts to change).

My money's on Socrates.







23. westernconfucian - November 12, 2010 at 08:03 am

Thank you, sir, for this wonderful article.

I'm an American in South Korea, where my daughter and son were born. My daughter has cerebral palsy. Had the doctors intervened a few seconds earlier, she might have been fine. Had they intervened a few seconds later, she might have been far worse off, or dead, as she most certainly would have been before the advent of modern medicine.

South Korea is not a litigious society, so a lawsuit was never an option, thank God. I could blame the doctor who delivered my daughter, but I choose to credit the doctor who rushed in to save her.

As a Catholic (convert) and devotee of Flannery O'Connor, I had to laugh out loud at this: "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.'"

If I might, I'd like to recommend a South Korean movie about a woman with profound cerebral palsy: Oasis (2002).

24. liberaliberaliberal - November 12, 2010 at 10:23 am

While I understand and respect your choice about caring for August, your son, I kindly ask you not to write falsehoods about the Shiavo case. "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" is so badly misrepresentative of what actually happened it damages your credibility as an author on this topic. I realize that in your state of mind at the time you might have read the situation in this light, but it is simply not true. Terry Schiavo had expressed to her husband her avowed desire not to be placed on life suppost should she be in a persistent vegetative state. The court did not force the hospital to starve and dehydrate Terry Schiavo. The court enforced Terry Schiavo's right to determine whether or not to accept medical treatment. I cannot help but think that you are still not dealing with your son's situation in an "enlightened" manner. He is not "different" from the rest of humanity? You may see in him a version of yourself, but this is not based on any rational attempt at objectively viewing August's personhood or quality of life. While you and your family are willing to sacrifice your lives to the maintenance of your son, kindly refrain from any attempt to force your choices on others, especially because you appear to be unable to view these matters accurately.

25. euglena - November 12, 2010 at 11:22 am

Dear Chris, a remarkable article, and a glimpse into what the real value of things and persons is, or should be. Thank you. God bless the four of you.

26. hempenasphalt - November 12, 2010 at 11:42 am

Why cannot we come out & say it, that this Peter Singer is a dick? Oh that's right, we are trying to be mature intellectuals. Weelll.

27. soundguy - November 12, 2010 at 12:54 pm

And what a searing indictment of we who profess to be so open-minded: "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." That it would be the Christians, so often maligned in academe as know-nothings and unthinking simpletons, that would understand the inherent value of people such as August and Peter is something that should open our eyes. Please, no faith flame wars here, just a plea to be *truly* open-minded.

My boys had a friend who was in nearly the same state as August, and I'll never forget them saying at his funeral (he was 13), "He was a really cool friend." I hope their memory of Levi fills them with compassion whenever they come upon such as these.

28. jenevera - November 12, 2010 at 02:46 pm

The metamorphosis that I, as a parent of child with special needs, have experienced is something so intellectually and emotionally unifying that to put it in words would be analagous to presenting you with the pinned down wings of a live butterfly.
There is no mystery to it, but unless you live the life, the flight is forever missed.

The transformation from mother to mother of a child with Autism has created a knowing in my life. The knowing that ones own internal life connections and disconnections remain dormant and unrealized until all matter and matters around oneself nuclear react one into a state of instantaneous and continuous awareness of the life and death between one and all.

Jennifer

29. deel5906 - November 12, 2010 at 06:43 pm

I thoroughly enjoyed reading your article Professor Gabbard. While reading it, I could somehow feel your frustration with the system where your son's needs are concerned, coupled with the joy that you feel when you are with him.

I think it is awful that anyone would have to be reminded of the fact that the Peters and Augusts of the world are just as human as any of us - and oftentimes moreso. I disagree with your assertion, however, that August's disability is not a part of God's plan. Provided one believes in God of course, and prescribes to the Christian customs of love and faith, August's disability is absolutely a part of God's plan. Anyone who reads your article is bound to get something good out of it - something that can and likely will be passed on, whether consciously or unconsciously, to those who might otherwise have never known and by not knowing, would have been destined to remain the bully of your youth - forever disparaging the Peters and Augusts of the world.

30. krigues - November 12, 2010 at 09:28 pm

Professor Gabbard, Thanks for the article and to the others for their thoughtful comments too. I do not have a child like August, but I still agree in many areas with Professor Gabbard.

My first child was born at 25 weeks, weighing 745 grams.

After a very long hospital stay, and years later with a child no one would notice as different or disabled - we feel lucky, blessed or whatever you want to call it. Has it been more work than our full-term son? Definitely. Did we learn from our experience? Of course. Do we look at her with wonder and awe and say "thank you?" Of course. Had things gone differently with her having disablities, the answers to those questions would still be the same.

Parents are in wonder of their children - disabled or not. Parents learn from their experience with their children - disabled or not. Parents should be thankful of their children, disabled or not.

Thank you so much for saying people and their disablities are not God's plan: "They simply are what they are," Well-meaning friends often tried this as a way to comfort us. Another peron might believe in GOD'S PLAN, and find comfort in it for themselves. Great. I find no comfort thinking that God did this to my daughter (or the millions of children like her or August) to make her suffer and feel such pain for months. In what value system is my "learning" worth that kind of pain on another human being?

Hopefully we all learn the lessons of compassion and love where we can, but I would not like to believe that God has us learn those at the expense of others.

31. ykamdar - November 13, 2010 at 05:54 am

Very inspiring.

Our daughter is a special child. She has added a wonderful dimension to our lives. Being her father has brought sublime joy into my life.

32. chandlermedlib - November 13, 2010 at 01:55 pm

The story itself is quite moving, and I deeply admire your love for your child. But the interpretation of Singer could not be more incorrect, and in that sense I think you do a real disservice to your cause. Nowhere does Singer advocate anything like the claim that your son would count as less than a person. I defy you to find any line that, taken in context, could plausibly sustain such a reading of anything he has ever written.

33. bubbe - November 13, 2010 at 04:52 pm

I come to this discussion from the OPPOSITE end of this discussion. I AM the disabled one!!

While I can appreciate and admire the beautiful sentiments expressed by the writer and the various people who have written in, I would like to give my input.

First, a bit of background.

While my situation differs from the one presented...the outcome is the same. Having an uncurable, disabling progressive disease - I had become the paraplegic, unable to speak, hear and legally blind. By the time I reached this devastating place...I was in my early 30's. As many children are born this way...I "grew" into it! These children will, should they survive - become adults too!

What most encouraged me to write, was the line in the article that spoke of the father needing to take care of the diapering and personal needs. This statement could come only from 1) a devoted father. However, should this devoted father being speaking of a disabled daughter instead - I belive the conversation would have a much different take. The daughter would reach puberty .... having the father, let alone ANYONE care for the physical needs due a young girl OR even an OLDER ONE - is not quite the same as for a son. Unless one would like to take the postion that this child/young woman/ woman is immune to any and all forms of having her modesty ignored...is a whole different ball game. If one wants to suggest that no matter HOW mentally challenged a child is...they have no sense of themselves - it won't matter - then, what kind of human being are you actually talking about? If the bottom line is, it only matters what the public sees: a clean, adequately dressed, well behaved (as possible) child - and, it doesn't matter what the child is subjected to in private...what exactly are we talking about? Referring to bright thinkers of years passed is very nice, but there is a reality here.

If a child would not know they are being pinched and pushed around..would you still accept that behavior from a caretaker? Therefore, if we expect that they are treated with respect and due consideration "outside" the home by all, - should these children expect less respect "in" the home - particularly by those who prefess to love them?

I don't believe most females - of any age - if they had a say - would want, feel comfortable with, desire, appreciate or agree to having their personal needs met by 1) the father, 2) strangers 3) male attendants.

If, in their eyes, it would not be respectful, and if they were able to speak up for themselves...how is it repectful to allow it to happen just because they can't speak up for themselves?

Might there be a female who wouldn't care? Maybe. But who should decide this for them?

It is my feeling - from personal experience - nothing can be more humiliating, torturous and degrading then to have my right to dignity and modesty ignored. Nothing

G-D willing, these children will grow up - what can they expect?

34. chaddywinkus - November 14, 2010 at 01:58 am

Bubbe, you missed the part where the father must take care of August because his wife has a herniated disc. The rest of your response is a moot point. I'm just saying.

35. elizabetha - November 14, 2010 at 02:32 am

Thank you so much for this perspective -- although I am a mother of a child with severe disabilities, my thoughts are echoes of what you've so beautifully articulated. I am posting a link to this essay on my blog and hoping to share it with some of the medical professionals with whom I work.

36. djelpern - November 14, 2010 at 06:47 am

Sam Crane, a professor at Williams College, had a similarly disabled son and wrote a memorable book, Aidan's Way, about his son. It is important reading for those interested in this area: See: http://pathography.blogspot.com/search/label/Congenital%20Abnormality

37. pontifexmaximus - November 14, 2010 at 12:23 pm

Like so many others, I am humbled by the author's decency and selflessness. He is, without question, a stronger and more generous person than I am.

Nevertheless, I am not with him on the question of August's humanity. It may be that viewing August as just another eccentric member of the family is necessary in order to muster the strength to care for him, but if August has no functional mind -- no sense of self, no registry of his own experiences, not even the internal agency of conscious thought -- then he is not human in any way I understand that term. He may be living in the basic biological sense, but of course there are many living things that are not human. If there is any meaning at all to the word human as considered here, it is about more than corporeal existence. Call that additional thing what you will -- sentience, self-awareness, spirit, whatever -- without it we are just an elaborate arrangement of cellular matter.

Where exactly the line between human and non-human is to be drawn I could not say, and I surely do not mean to suggest that caring for a being such as August is inappropriate. Chris Gabbard has reached his own decision on this topic, and I am in no position to gainsay it. My concern, though, is that defining a being such as August as human gives strength to the life-at-all-costs elements within our society. Are we to say to others in Chris Gabbard's position that even if they reach a different conclusion than he they are nonetheless compelled to make extravagant sacrifices such as his? Are we to say to those who suffer from destructive, progressive conditions that they have no say in their own fate? Are we to say to those who care for elderly relatives that they must bear any cost to maintain a body whose mind is irretrievably lost? The fact that distinctions are hard to make does not mean that we should not make them. Defining all humanoid bodies as fully human is an extreme stance, one that carries with it huge costs (including, of course, financial costs). I truly admire Chris Gabbard, but I hope that heroic examples such as his do not become mandatory.

38. hollylooyah - November 14, 2010 at 03:26 pm

Pontifexmaximus... I would classify you as a "humanoid", but not human. In order to be human, you must have a heart! You have not demonstrated that! Instead you appear to be operating more as a utilitarian robot! Chris is not a "hero". He is a father. It is clear to me, that you have never been one whether or not you have produced progeny. I am not surprised by your utilitarian explanation for what constitutes "humanity". Plenty of myopic, "intelligent" people hold your view until they step outside of what can be described on paper and choose to live a real life, a life of true humanity. And why mention money anyway? Have we really come to that? Humanity is now what is affordable? No one is suggesting that someone with brain death and living on complete life support should be forced to continue "living". August is clearly a person. He is loved. He is cared for. He contributes to society. He is breathing room air on his own. He is eating by mouth! To end his life would mean starvation, in the same way that you would kill an infant! Would you suggest killing an infant? He is not like someone who is being kept alive strictly by machines beyond all hope! There is a HUGE difference! How DARE you suggest otherwise. I am sickened today by your heartless comment. It truly is the foundation of eugenics and as such has no place in the place of where real life occurs, the home and family. You are the true nature of "death panels". Honestly! Why would you say such things? I am always shocked by the ignorance, that supposedly thoughtful, educated people display! He is smiling! Do you?

39. hollylooyah - November 14, 2010 at 04:06 pm

I would also like to add, Pontifus, that care such as this is indeed mandatory currently in America. It does not necessarily need to come from a parent. But currently today, yes, we are required to feed, clothe, and seek medical care for vulnerable people. To not do so is considered child neglect and abuse. I'm not quite sure why you think that would be considered exceptional. Your statement "I hope heroic examples such as his do not become mandatory" does not make any sense. Caring for a child IS mandatory. No matter their ability level. We have state programs and foster parents to do the job if parents are not able to. As of yet, we have not legalized involuntary euthanasia of unwanted, vulnerable people. And if you know nothing of the subject, please educate yourself and don't just limit your arguments to your imagination to how you might feel should you somehow be required to care for a disabled individual. Harumph. :) Honestly.

40. libgrad - November 14, 2010 at 11:31 pm

I am a graduate student who provides respite care for a boy with severe disabilities. I help out on the one evening a week that his father teaches at my University. I only spend a small portion of my time with him, but this one evening a week has made a profound impact on my life. This boy will never be able to care for himself and he needs almost constant supervision. He can never live a normal life or anything close to it. However, I certainly consider him to be a dear friend. I admire his parents for their strength and the amazing love that they have shown in caring for him.

41. kati8046 - November 15, 2010 at 12:09 am

So much of what you have written strikes incredible similarity to the lives of my family. My little brother was born with a multitude of physical and mental disabilities, most likely the cause of malpractice and a case that no one wanted to help us fight. The "stare" phenomenon that occurs when we are out to lunch and slobber and food happens to run down my brother's chin is something that I have learned to have patience with -- after all, so much of the world has not been blessed with such special people in their lives, and I feel so sorry for them. Sometimes I often just stare back, until they get the hint. The changing of diapers, the hours of work it takes to bring love, comfort and safety to our very beauitul family members, very difficult work that most people just don't understand.

And above all, what rings true in this article for me is how truly lucky I am to have my brother in my life. The way I view the world and myself would not be half as enlightening if my brother were not a part of my family. I love him, and in turn others, in a way that is so deep, powerful and nurturing, that I often alienate friends for caring about them so much. Nick has taught me true love, patience, and how to laugh at life, truly laugh at life, and to be grateful for all things under this sun.

Thanks for the awesome article -- I passed it along to my mom.

42. kati8046 - November 15, 2010 at 12:32 am

pontifexmaximus -- I truly pity you for your inability to understand what it means to be human. Humanity is so vast and complex, that no theory, map, and especially "logic" can attempt to define it. You seem incapable of understanding that human emotion is at the core of epistemology. We cannot make logical decisions without having emotion. Hence, people with emotional disabilities (aspergers for example) are incapable of making logical decisions. When my grandfather was an engineering student at Berkeley, my grandmother had a stillborn child. My grandfather asked his professor for an extension on the final exam so he could bury his child. The professor said no. His "logic" was that everyone must take the final at the same time, no matter what. However, true logic, which requires emotion, says that by HAVING COMPASSION and UNDERSTANDING, the logical thing to do would have been to grant my grandfather the time off.

It is a completely logical fact that people with severe mental disabilities are human, and to not care for them would be inhumane.

Try wiping a 21-year-old's butt day in and day out before attempting to post on this topic again. Then, and maybe then, will any of us have the stomach to listen to your "logic."

43. mashuuu - November 15, 2010 at 04:21 am

Very moving. I admire the author for his fortitude (although I am sure he would phrase it differently), and his ability to fluidly express with reason.
There are some parallels with Kenzaburo Oe - the 1994 Nobel laureate - http://en.wikipedia.org/wiki/Kenzabur%C5%8D_%C5%8Ce
His first son was brain damaged since birth, and is a recurring theme on many of his later works.
I don't doubt that care and compassion are distinctively human traits, and I wholly agree with the author on how reason is a limited tool.
A friend's son has Down's syndrome. The friend happens to be a resourceful man, as is the family of the mother. The author of this article, too, although not excessively wealthy, seems to enjoy an income and/or working environment that allows him to care for his son. Thank God.
Care of the elderly is a serious problem in Japan. I sincerely hope that all those who are involved in the care of persons in similar conditions to August that they too are just as resourceful.
I'll say it more directly. Have any of the people posting here considered the possibility that some may simply not be capable of affording such care? What would you do if you were in that position? Your child cannot live without special care, but you cannot pay for it.
Would you still be able to retain your touching views? Having never reared a child or taken care of anybody in need, I do not know, honestly.

44. lazysillygirl - November 15, 2010 at 05:02 pm

Re: the comment above. Are you an accountant, by any chance? Does the value of someone's life hinge on whether or not there are the resources to care for him. Would you wipe out the poverty stricken countrys of the world (people who are physically capable but disabled by virtue of lack of resources)?
These "touching views" are called Love. Have you heard of it?

Thank you, Chris, for the honest beauty of this portrait.

I commend you for your love and sacrifice.

Make a funny face at your son for me.

Polly (Lazy Silly Girl

45. satty - November 15, 2010 at 07:33 pm

re: 44 lazy silly
you're going to extremes - no. 43 isn't talking about wiping countries out just because they are poor. He's asking a reasonable question - read carefully and react normally. "what would you do if you had a child that needed special care but your finances cannot cover him or her?"
Having "touching views" is great, but I wouldn't call that love. Anybody can have "touching views". You're just "viewing". People who can "act" have love. Unfortunately, lazy silly, in reality, "acting" requires resources (whether it be time or money or both), unless you believe in divine miracles.
I'll repeat for him - I'll re-frame it for you. 43 is asking a reasonable (and in many more cases than we'd like, probably realistic) question. Your son or daughter is in need of special care that you or your family cannot afford. What will you do about it? Keep your "touching views" and hope it'll all be right?

46. adyange1 - November 16, 2010 at 03:28 pm

A very thought-provoking article; a beautiful tribute to a disabled son.

I only disagree with the philosophy that "August's disability does not form a part of 'God's plan' ". Living the life that is so well-explained in the professor's article, and having a very similar, if not more severe, child (daughter) smiling on my lap this very instant, I feel somewhat qualified to speak on the matter that has been the subject of much prayer for the past several years.

Allow me to submit the inspired conclusion of those prayers without flame from nonbelievers. I think you may find understanding in it.

We all existed with God before we came to Earth, as his children. We all made the decision to come to Earth, to have a mortal experience and thus increase our understanding, our capacity to grow, and to be put through the ultimate test: to see if we could obey God's commandments even through temptation and trial.

We were not entirely equal in our previous existance. Some were better than others - much, much better. These individuals also chose to come to Earth, but did not need the "testing" that the majority of us endure on a daily, hourly basis. They had already proved themselves. These glorious spirits would also be a prime target for the adversary - "satan", "the devil", call him what you will.

So God chose to send them to Earth in a way that would protect them. They would come in a capacity that would prevent the ability to choose right from wrong, to be tempted, or to be led astray. They would come "disabled". But still, their beautiful spirits, their true nature shows through in the pure love they offer to those near them. And, the perfect, unconditional love that they teach others to have by the very act of caring for them.

My daughter does have many trials. But she will never loose her reward. How fortunate I feel to have an understanding of God's plan for her, and to know what a truly angelic spirit has been entrusted to my care. "Educated" minds may speculate, but if you pray sincerely, asking God if this is true, He will give you the answers.

47. lazysillygirl - November 17, 2010 at 08:59 am

re:response to satty re:43,44 Sure, he asked a practical question. I get that. It's something everyone with a disabled child will have to work out. re:"touching views" These were not my words, but a Quote from 43 "Would you still be able to retain your touching views? Having never reared a child or taken care of anybody in need, I do not know, honestly." What the author has put forward here are not "touching views"; they are beliefs scrutinized, wrestled with and articulated, they are love in action. This man is struggling to love and raise a son who will never become independant. I believe #43 tried to reduced a piece on the compassion of the human spirit to an ecomomic issue (could have something to do with the fact that #43 is childless?). He missed the point of Chris's reflection. It wasn't to send people in the direction of aide for financial relief, it was to inspire us all.
re:wipeout of poor countries, Why would 43 ask this question unless he was hinting at the idea that we should do away with people who are too much of a burden to society. There are people in this world who fully support such a notion. I do not.

48. valdiane - November 17, 2010 at 05:04 pm

My husband says to never read comments because the the truly unintelligent will be trying to appear intelligent.
I signed up for this to make a comment, so what does that say about me?
As an educator of the severely mentally challenged for 30 years and the parent of a severely mentally challenged child I found Chris's article beautiful. His ability to examine himself through his child's life, to use his experience to challenge his own beliefs, and the beliefs of his students is a picture of the growth of a man and a society.
It's not about your beliefs, it's not about August, although he plays a pivotal role, it's about Chris. It's about someone willing to challenge the accepted, intelligence of the world and to recognize a different type of intelligence and value in life. The burdens to society are the ones unwilling to care this much.
Forget all your philosophical, educated, conversations and quotes,
You accept the hardships, you feed and change diapers, you lift until you are hurt because you love someone, it's about a family.

49. jmgupnorth - November 18, 2010 at 01:11 pm

Thank you for you wonderful, well-articulated article, Dr. Gabbard. Normally I do not comment, but I was moved by the article and also mortified by some of the comments. I work with people with intellectual and development disabilities--but I did not intend it. Many unusual occurances led to my career field. People ask me, "How can you do it?" Frankly, I don't understand the question.

When I was 16, I began volunteering with people with disabilities in a hippotherapy (horseback riding) program--and my horizons were broadened beyond my previous imagining. I remember leading a horse for a little girl who could not talk. She was floppy, and seemed so fragile. The volunteers had no way to communicate with her. When it it was time to trot the horse, I feared she might be harmed, or at least would hate it. But we trotted, and afterwards, when I turned around to check on her, I was shocked to see her stunning, wonderful smile. She laughed! She loved it! And my preconceived notions were shattered. This was an even more significant event because it gave us a way to communicate--she smiled to indicate "Yes."

Just because someone can't communicate (or we can't recognize another's attempts to communicate) does not mean the person lacks inner knowledge and awareness. And most definitely, IQ is NOT related to one's ability to love or to one's worth in the world. To assume we can judge another's worth is to play God. Bringing love into the world is an astonishing gift.

Also, being able to care for someone and loving someone are two very different things. "Touching views" are different from love. Sometimes, recognizing that one cannot provide adequate care is a great gift of love. True love may mean making many sacrifices--but are sacrifices made out of love actually sacrifices? Ask Mother Teresa. She said she wouldn't do what she did for a million dollars--but she did do it, because she did it out of love.

50. kotipup - November 19, 2010 at 09:46 pm

As a mom to a 7 year old little girl who has severe medical and developmental issues, I thank you for writing a piece that in so many places expresses what I have thought about and felt. Having a child with disabilities does dramatically change one's perspective, and perhaps it is not only our parental sentiment, but also our direct interaction that informs us.

51. lbmiranda - November 20, 2010 at 05:09 pm

To Chris, this was a great article; my friends and I really enjoyed it. I'd love to see it republished in the Stanford Magazine.

I can relate to your story. I have a typical 10 year old son and a 7 year old daughter with epilepsy and cognitive disabilities. But unlike August, my daughter never sits still for a second, she needs to be constantly watched because she is always on the move and has low safety awareness.

I was taught growing up that being smart was the be-all-end-all. I went to Stanford and Cal, jumping through one series of academic hoops after another. I assumed that my kids would follow in my footsteps. It took my daughter's disability in order for me to question the hoops in the first place. What I've learned from first hand experience as her primary caregiver is that my daughter may be cognitively disabled, but some part of her, let's just call it her spirit, is whole and completely intact. What philosophers or people on the sidelines may or may not feel about her humanity is not important to me. What matters to me is that I thought she was less, but I've learned she is more!

I've joked with other parents that if raising a child is a spiritual practice, then raising a child with special needs is like being on the highway to enlightenment! Ha ha. Have a fabulous Thanksgiving.

52. attcwsm - November 22, 2010 at 05:46 pm

Thank you for sharing. I would be interested to where you came across Martin Luther's belief about "changelings."

I love First Corinthians 1:27.

53. saar90 - November 23, 2010 at 01:01 am

LiberalLiberalLiberal: I must respond to your comment. You mention this article contains misrepresentations of what actually happened in the Terri Schiavo case? You are egregiously misinformed on the very topic you try to correct the writer one.

"Terry Schiavo had expressed to her husband her avowed desire not to be placed on life suppost (sic) should she be in a persistent vegetative state."

While there is absolutely no evidence this was Terri's desire, other than only the word of her husband, "life support" entails medical devices that keep a person alive due to the failure of organs or organ systems (lungs, brain, heart, etc.). Terri had no such organ system failure. She was only unable to voluntarily swallow. All her organ systems were fully functional on their own.

"The court did not force the hospital to starve and dehydrate Terry Schiavo."

Uh, that is exactly what happened.

"The court enforced Terry Schiavo's right to determine whether or not to accept medical treatment."

Again, there was no evidence, other than hearsay by only *one* witness, that at some point in time in the past Terri had made this determination.

Furthermore, since when is feeding someone 'medical treatment'? I suppose I should need a nursing license in order to feed my 7-month-old baby? Are you giving yourself 'medical treatment' every time you enjoy a meal or snack?

"I cannot help but think that you are still not dealing with your son's situation in an "enlightened" manner. He is not "different" from the rest of humanity?"

Wow, it must really be a pain for you to have to live at a time when so many loving parents, who are not as "enlightened" as you are, are willing to put differences in behavior & cognitive ability aside and still see the humanity in others. They must even see your *own* humanity despite your boorish behavior and decided lack of intelligence. Lucky you!

"You may see in him a version of yourself, but this is not based on any rational attempt at objectively viewing August's personhood or quality of life."

Because you, having never met the child, are much better at making a judgment on August's quality of life and 'personhood' (what IS that, exactly??), right?

"While you and your family are willing to sacrifice your lives to the maintenance of your son, kindly refrain from any attempt to force your choices on others,"

Where exactly did the author express his intention to force other people to make the same choice he and his wife made? And the 'choice' he made - to love and care for the son he helped bring into the world - well, if there were more people in this world like that, and less like you (since apparently your 'choice' would have been to tell the medical personnel to turn off all the machines, because you aren't in the least interested in being saddled with a child like that; oh no, you only want kids that are *perfect*, don't you? Cause those are the only ones that deserve to live or have any real 'quality of life (and what is *that*, anyway?) this world would truly be a better place.

"especially because you appear to be unable to view these matters accurately."

Well, I think it has been established how accurate your view of matters are.

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