I am excited to introduce you to my friend and colleague, Chris Gabbard. A month ago, Chris published his first book, a memoir called A Life Beyond Reason. After reading the book, I wanted to interview him to hear about his motivations and his writing process. I hope you enjoy this conversation!

If you want to hear Chris read in person, please check out his upcoming events! Chris will be reading from and signing copies of his book at San Marco Books, Thursday, July 11, 6:30 pm (1971 San Marco Blvd., Jacksonville); The Bookmark, Friday, Aug. 2, 7 pm (220 1st St, Neptune Beach); and Midtown Reader, Friday, Oct. 4, 7 pm (1123 Thomasville Rd, Tallahassee).

Chris Gabbard grew up in Palo Alto, California, and has one sibling, a brother named Jesse. Raised a Roman Catholic, he attended St. Francis High School in Mountain View, the heart of Silicon Valley. He worked for a year as a full-time boycott organizer for César Chávez’s United Farm Workers Union, earning $5 a week plus room and board, then studied creative writing at San Francisco State University. For a long period he worked in and then ran his family’s retail irrigation-supply business in Mountain View. From 1983 to 1989 he was the publisher and chief editor of The Short Story Review, the first journal to publish work by Chinese-American writer Amy Tan. He married Ilene Chazan in 1992, and in 1999 he earned a Ph.D. in English literature at Stanford. He now teaches British literature and Disability Studies in the Humanities at UNF in Jacksonville. In 2012 he won the Disability Resource Center Professor Empowerment Award, and in 2017 he garnered the Sigma Tau Delta Faculty Appreciation Award, in recognition of his “Outstanding Commitment and Dedication to the Art of Teaching.”

It was while wrapping up his doctoral work at Stanford that his son August was born with severe and multiple impairments. August passed away in 2013. Beacon Press published Chris’s account of the experience, A Life Beyond Reason: A Father’s Memoir, in May of 2019. Chris lives with his wife Ilene and seventeen-year-old daughter Clio in Jacksonville, Florida.

What motivated you to write A Life Beyond Reason? 

I wrote the book for three “official” reasons. First, I wrote it to commemorate August and to celebrate the father-son relationship we shared. As his father, I wanted to assert that August’s life was worth living. Tied in with this motive was my desire to dispel the notion that he was a “vegetable” and that his was a life of suffering. It is true that he lived with significant and multiple impairments, but he was a happy child who took great joy in being alive, and I greatly enjoyed being with him. 

Second, I wanted to describe August’s disastrous encounter with modern American medicine. He was born with H.I.E. (hypoxic ischemic encephalopathy), likely due to medical error. In his case, H.I.E. meant that he was a spastic quadriplegic from cerebral palsy, was cortically blind, and profoundly cognitively impaired. And toward the end of his life my wife, Ilene, and I allowed a questionable medical device to be implanted inside him, and this led to his death. So, I wanted to talk about both his beginning and his ending. 

And third, as a scholar of eighteenth-century British literature, I study the Enlightenment. This philosophical, scientific, and social movement provided the platform for our modern, globalized world. Embedded within the legacy of the Enlightenment are numerous contradictions that are difficult to untangle. The various facets of my son’s story seemed to embody these embedded contractions. 

I had a fourth “unofficial” reason. I had been teaching literature for almost two decades and reading it for much longer. I found myself often thinking: “If I have been teaching it for so long, can I actually do it, that is, write a piece of literature?” So, I set out to see if I could.

Describe the story of the manuscript – how many drafts did you create, how many rounds of beta readers did you have, how did you organize and reorganize the book, etc.: 

I spent 4-1/2 years writing the book. One reason that it took so long had to do with not having been able to secure a publisher. I must have written the equivalent of one-hundred drafts. Had I found a publisher early in the process, the book would have gone out prematurely, and I am very glad that it didn’t. In the early stages, though, I didn’t realize how under-developed the manuscript was. The delay gave me the time (against my will) to rewrite, and rewrite, and rewrite. But I believe that it is a far better book because I had to wait. 

As for beta readers, forty-five people gave me feedback. All of their comments were useful. Sometimes their silences were telling. Silences gave me clues as to what I was not doing or doing poorly. On more than one occasion, readers asked me basic questions about the facts and/or sequence of the story, and these questions benefited me because they pointed out the gaps, the parts where I was not being clear about the basics. 

With regard to organizing the text, this was one of the hardest parts. What to say when—THAT was the challenge! In my first drafts, information was emerging in the form of an enormous, shapeless, jumbled blurt: a yelp of pain. A lot of the time was spent trying to figure out how to unravel this gargantuan and emotive blurt and give the events an order and sequence that would be both intelligible and appealing to readers.

How has your academic writing prepared – or failed to prepare – you for writing this narrative? 

E. M. Forster writes in Aspects of the Novel that keeping the storytelling process moving depends on responding to the reader’s primitive, impulsive question, “What happens then?” 

Professors like to profess, which means, we like to tell people things, explaining as we go. We feel that we were born to educate. Telling a story is different from writing didactic expository prose. I had to learn how to write in a completely new way. Telling a story is the opposite of writing an essay: you have to learn how to withhold information. You have to silence that part of your brain that really wants to inform and show off. 

As a writer of a story (even a true story), I had to respect the narrative process, which requires constant forward movement. Stopping to elucidate a pet topic, no matter how dear, only slows momentum and can create dead moments. So, I had to be very, very sparing when it came to telling people things just because I felt it was important for them to know something in an intellectual way.

What advice would you pass on to another writer seeking to publish a book for the general audience? 

By “general,” I assume you mean a non-academic audience. Let me dispel the notion that a “general” audience exists. Publishers want to know what segment of the general audience a writer is appealing to. They will want granular particularity. They will want to see a book proposal that looks a great deal like a business plan. They will want a detailed blueprint of the selling process because they are investing time and resources in your project, and they will need to cover their expenses, if not make a profit, in order to stay in business. And these are tough times for publishers! Who will be the book’s intended audiences? What will be the plan for outreach to these audiences once the book is published? What specific actions will be taken? What are some similar, recently published titles? Did they sell well? Why is the proposed book different from the titles already out there? What does this book have to add to the conversation? What does the author bring to the table that will help promote the book? 

Writing the manuscript is only part of the process. The book proposal my literary agent asked me to write come to almost 90 pages. It was that long based on the examples she sent for me to emulate. Doing all of this was very far from what I thought I was going to do, which was, to write a beautiful literary work about my deceased son.

Which moment, episode, or scene in the book are you most proud of and why? 

The passage in the book I am most proud of was contained within the excerpt Salon reprinted for Father’s Day, 2019. Salon used the first half of chapter four. That section describes the day I ran with August in his supersized jogger through the Philips–Craig Swamp Cemetery in the San Marco neighborhood and then was caught in the thunderstorm while heading home. I am proud of it because it situated the two of us, August and me, between past and future, in a number of different ways. Paradoxically, it also located us squarely in the “here and now,” the present. For these reasons, it became a pivot point in the story.

Did you find it difficult to write about family and friends who would eventually read the book? Why or why not? 

No, not really.In all aspects of the book, I tried tobe careful with regard to accuracy. The name of the friend who attended the birth, Joanne Sasaki (a pseudonym), had to be changed because I had to conceal her affiliation with the institution where she works, which also happened to be the hospital where the birth took place. This had to happen because, for legal reasons, I could not identify the hospital. Outside of that, writing about family and friends posed no problem. Everyone was supportive of the project.

In the book, you describe your resolve to avoid making jokes at August’s expense and avoid remarks that would hurt him if he could understand them. Did you have any moral or ethical guidelines in mind when creating this book? 

I have heard criticism directed at parents who have published books about their disabled children, the charge being that they are doing so without the child’s consent, at the child’s expense, and for their own aggrandizement. The child’s privacy is being violated. In sum, the charge generally is that there is something unethical and sketchy about writing publicly about one’s disabled, or even about one’s typically developing, children. I have read a lot of memoirs by parents of disabled children, and in a few cases I can say that the criticism is partially warranted. A few examples occur to me in which the book consisted mostly of the author talking about him- or herself, about his or her life, opinions, and/or scholarship and barely mentioning the child. With this criticism in mind, I went out of my way to make certain that August would occupy the center of the story, with long passages describing him, what he looked like and what he did, his birth, death, and everything in between. This was to be a biography, not my autobiography.

Legitimate ethical questions come up when one speaks on the behalf of a disabled individual. In most circumstances, one should not do this. August though was a non-verbal, non-autonomous person. He could not speak, much less speak for himself. Skeptics may question this claim (and there are such skeptics, especially in some corners of the disability community), but I would respond that the speaker of the question may be unknowingly dismissing a population with which they are unfamiliar. I would suggest that those who claim that there are no non-autonomous, non-verbal people should make a better effort to meet a few. If I didn’t speak on behalf of my non-verbal son, who would?

Books by parents of disabled children serve a valid purpose. Parents need information from other parents in order to become better parents themselves. The parents of kids with impairments need information from other, similar parents even more than do the parents of typically developing ones. If we followed this criticism to its logical conclusion (that these books are unethical), no discussion in any print medium could occur among parents of disabled children. This ethical concern could have the counter-productive effect of shutting down exchanges of vital information, and this shutdown would lead to ignorance, misinformation, sense of isolation, self-loathing, and hopelessness. People in this community need to be in touch with each other, and books are one way to do that.

Moreover, the political consequences of not speaking up by writing about disabled children would be catastrophic. Politicians and the press largely ignore parents of disabled children and their and their children’s pressing needs. Telling these parents that it is improper for them to speak about their children and their needs in any print medium without first gaining their children’s consent and approval (which can’t happen anyway even with mentally cognizant children because they are still minors and so are not legally able to give consent) out of some misguided ideal that we need to protect children’s privacy will only further shut people up. And shutting parents up will reinforce the public’s and politicians’ prejudice that this segment of the disabled population does not even exist. And if they don’t exist, the politicians and the public will think, then we don’t have to think about them. This kind of misguided clampdown will only take us back to the 1910s and 1920s, when the situation were very, very bad.

So, my ethical guidelines in writing the book were simple: they consisted of being truthful, faithful, and accurate when informing the public that a population of non-autonomous, non-verbal individuals such as August exists, that they are more than “vegetables,” that they are full human beings, that they enjoy their own lives, and that they and the families caring for them need the support of a robust social safety net.

Lastly, because the memoir concerns an arrogant and indifferent medical establishment that brought about August’s premature death, I strove to remain vigilant that the story I was telling be fair with regard to the people with whom I had/have a grievance. To this end, I tried to convey some of the complexity of the situation, that the doctors themselves were not entirely to blame, but the system in which they work.

Which memory of August in the book brings you the most joy? 

That’s easy: this passage occurs early in chapter seven, when I am changing August’s poopy diaper. It is a moment when I have a sort of hallucinogenic inspiration. I look into August’s eyes and see the face of God. It’s pretty trippy, but it is also central to the book’s theme—that caring for a disabled child will change your life, just not in a way that you might expect.

What are some challenges you encountered while creating this book? 

The main challenge I faced had to do with the fact that the story of a disabled child who dies is not one that most people want to hear. Publishers fall into the category of “most people.” One representative of a major house said he “shed a tear” reading my proposal but that he was going to pass on it. When I read this rep’s response, I realized how naïve I had been: people are only going to see this book as a grief memoir. 

The inherent sadness the story elicits overpowers the book’s political messages, which are threefold: (1) the fraying of the social safety net, (2) the brokenness of our torts system, especially when it comes to birth-injury cases, and (3) the fact that the FDA has been captured by industry. I am going to have to accept that readers are going to focus on the sadness and overlook what August (through this story) is trying to tell them.

Did early readers or editors ever attempt to soften or sentimentalize realities you were writing about? Did anyone ask you to take a different approach with this book?

In any linguistic system, a speaking agent cannot voice exactly what he/she intends to say. The system forms what it is possible to utter, even to think. So, yes, there was pressure to soften and sentimentalize. If your disabled child dies, and if you want to talk about it, then the linguistic system makes place for only one approach: sentimentality. One important person, I won’t say who (she turned out to be extremely helpful), wanted me to drop all reference to the political themes mentioned above. To her mind, politics wandered off the sentimentality script. She pressed me for a sweet, or should I say saccharine, story. However, I don’t blame her. Publishing is a business. People need to earn a living, and they do so by selling books. It is not the job of people in the industry to provide me with a platform for a rant. So, if I wanted to play in that league, I had to learn the game. That said, I managed to get through the editorial process saying everything that I wanted to say. I have to thank the folks at Beacon for this. They were great! In fact, my editor showed me ways to better express what I wanted to say. In the end, I came out with a better book than I started, thanks to her. So, I am very happy. 

Many stories of disability come under the pressure to be “inspirational,” where the disability is minimized or exchanged for spiritual epiphanies. Did you experience this pressure?

The answer to this question goes back to the previous one. As a disability studies scholar, I started writing the book absolutely hell bent on NOT producing anything “inspirational” or anything that minimized disability in exchange for spiritual epiphanies. That said, the process of writing is one of discovery, and the writer has to go wherever the process leads, even if it is to a place he didn’t initially want to go. In my case, the process led me to places I did not imagine I was going to go. 

In a certain light, the book is “inspirational” for those who want to see that quality in it. And it is true that I did stumble upon spiritual epiphanies that would not have happened had disability not been SOMEWHERE in the picture. The spiritual epiphanies (by the way, epiphanies are evanescent) emerged because I was meditating on the Enlightenment. By the end of the writing process, I found myself on the other side of the Enlightenment, “beyond reason,” if you will. Here is why: the rational thing to have done with August would have been to smother him with a pillow. An enlightened, rational man would have done just that, or its equivalent; Enlightenment man would have found some way to kill his child without getting caught. (Not getting caught would have been easy.) And yet, there was no question in my mind: I would never do that. 

So, once I realized that I would not do the totally rational thing, I had to let go of the ideal of rationality. Hence, the book’s title. Moreover, once I moved beyond the Enlightenment imperative that every individual conduct their life adhering 100% to reason, there was no other place for me to go but back to the spirit. Ever notice that there aren’t many options in life? The only third way, the only alternative to rationality on one extreme end and spiritualism on the other extreme end, is an amalgam of the two. So, to sum up, your question’s wording (“disability [was] minimized or exchanged for spiritual epiphanies”), with all due respect, is a bit reductive. I arrived at a different spiritual state through the process of writing a story, one in which there was a disabled person. 

What have you learned about the publishing process? 

I have learned that it is a heck of a lot harder to publish a book for a general readership than I realized. 

Let me tell you how the book came about. I published a piece in 2010 in the Chronicle of Higher Education about August that prompted a literary agent to contact me. She was just starting out on her own in the business. She wanted me to write a book. I said “no” to her at the time because August’s caregiving was too time consuming for me to write a book. Then, after August passed away in 2013, I contacted her about writing the book. By that point she had taken on a lot of big name clients and wasn’t enthusiastic. She had progressed into the $$$ projects. But she agreed to take me on (reluctantly), mainly out of a sense of obligation. I don’t think I would have been able to find a good, effective agent on my own. Finding an agent is actually very hard to do. It’s almost impossible. Without an agent, a project like mine could never have gotten off the ground. I would have had to publish my book on CreateSpace (Amazon), which is what I was fully intending to do if no press would have me. So, while I did a lot of hard work to make this book happen, I also was very, very, very, very, very, very lucky. I don’t think I stressed the word very enough in that last sentence.

If you could tell your readers to underline one passage from your book, which would it be and why? 

There are two:

This one sentence in Chapter 5: “If knowledge is power, imagination is destiny.”

And this from the Afterword: “Windmill-wings blue surrounds this spot of Laughing Orange—the laugh of Medusa. But I still find myself in a quandary: in which of the two colors does the truth lie?”