Love between a father and son, a medical error, a cover-up, a disabled son, extreme caregiving, and spiritual transformation.
In this seven-minute video, Chris Gabbard describes his memoir.
In audio, paperback, and hardcover
Guide to memoir / August’s medical & legal story / C.V. / Bio / Contact / Available for speaking / Holland-Bloorview Kids Rehab interview
“A poignant, powerfully written story …” —Sandra M. Gilbert, author of Death’s Door (W.W. Norton 2007) and co-author of The Madwoman in the Attic (reprinted by Yale Univ. Press 2020)
About the author
Chris Gabbard earned his Ph.D. at Stanford University and is Professor of English at the University of North Florida, where he teaches courses on the literature of the British Enlightenment and Disability Studies in the Humanities. In addition to publishing numerous academic articles in these fields, he has written on the need to strengthen the social safety net for families caring for significantly impaired and medically complex children. For more information, go to Bio and Academic profile
“A a story of extreme caregiving” —Michael Bérubé, author of Life as Jamie Knows It (Beacon Press 2016) and the former president of the Modern Language Association (MLA)
A Life Beyond Reason makes for an excellent textbook adoption in health humanities, disability studies, bioethics, sociology, literature, and narrative medicine courses. Examination copies for textbook course adoption and Freshman Year Experience programs are available through the distributor, Penguin Random House. Go here for ordering details: Desk / Exam copies
“This gorgeously eloquent memoir is excruciating in its impact, and is in the top most moving, troubling, and ultimately rewarding reading experiences I’ve ever had.” —Elizabeth McKenzie, author of the novel The Portable Veblen (Penguin 2016)
from Midwest Book Review
“A candidly written, thoughtful and thought-provoking memoir, A Life Beyond Reason is an extraordinary personal story with universal implications. An inherently interesting read from first page to last, A Life Beyond Reason is unreservedly recommended for both community and academic library Contemporary American Biography collections.”
For full review, CLICK HERE and scroll to “The Biography Shelf.”
from The Lancet
Review in The Lancet Child and Adolescent Health, vol.3, by Robert Stirrups
from Eighteenth-Century Studies
Review in Eighteenth-Century Studies, vol. 53, no. 2, by Chris Foss.
from Disability Studies Quarterly
“[T]he book would interest students and practitioners in education, healthcare, law and public policy, apart from parents, siblings and caregivers. Also, the author’s reassessment of Enlightenment ideas will interest the general reader in getting a peek into the disability studies perspective, and in simply understanding the growth of a father along with his son.”
For full review, CLICK HERE.
from Kirkus Reviews
“A professor steeped in the literature of the Enlightenment has his core beliefs about science, reason, and progress altered when he faces the reality of raising a son with severe brain damage. In his debut memoir, Gabbard (English/Univ. of North Florida), who serves on the editorial board of the Journal of Literary and Cultural Disability Studies, chronicles the challenges and joys of raising his son, August, who was born with profound impairments, both cognitive and physical: a spastic quadriplegic, legally blind, incontinent, unable to speak, and unable to feed himself. The author describes his son’s birth and the questions about decisions made in the delivery room. Gabbard is highly detailed in his discussions of his routine as daily caretaker and the ups and downs of August’s life, which included many surgeries and long hospitalizations.
“While making clear the enormous demands in both time and money, he is also transparent in his rendering of his deep, abiding love for his son. Once a devotee of the concept that our intelligence is what makes us human and that the unexamined life is not worth living, the author embraced the belief that love is what makes life worth living. To curious strangers, some of whom viewed August with wariness, Gabbard’s frequent reply—”This is my beloved son, in whom I am well pleased”—speaks volumes. The scenes with various doctors involved in August’s care reveal some of the limitations of the medical profession when faced with such physical and mental impairments, but Gabbard is not writing an exposé. This is both a memoir of a child’s short life and a father’s journey from an academic who thought that love was a weakness to a thoughtful, questioning adult who values the capacity to give and receive love. Parents and caregivers will find plenty of inspiration in these moving, empathetic pages.”
Praise for A Life Beyond Reason
“Chris Gabbard’s story of his son August’s life will leave you thinking about fatherhood, modern medicine, philosophy and the very definition of being alive and human.”—Mark Woods, author of Lassoing the Sun (Thomas Dunne Books 2016)
“A poignant, powerfully written story of a radically mismanaged delivery at a major medical institution as well as the painful yet paradoxically luminous consequences of that catastrophe. Simultaneously a timely exploration of medical error, a moving disability memoir, and an elegy for the blithe spirit of a much-loved child, Gabbard’s book will be must reading not only for investigators of medical malpractice and theorists of disability but also for all who are awed by the intensity of parental devotion.”—Sandra M. Gilbert, author of Death’s Door (W.W. Norton 2007) and co-author of The Madwoman in the Attic (reprinted by Yale Univ. Press, 2020)
“It’s hard to speak highly enough about the unforgettable book Chris Gabbard has written about his disabled son’s life and times and the medical industrial complex that tested Gabbard’s family beyond what any of us can imagine having to endure. This gorgeously eloquent memoir is excruciating in its impact, and is one of the most moving, troubling, and ultimately rewarding reading experiences I’ve ever had.”—Elizabeth McKenzie, author of The Portable Veblen (Penguin 2016)
“An extraordinary book, telling a story that needs to be told– and heard. It is a story of extreme caregiving, in Lisa Freitag’s apt phrase; it is a story of medical malpractice and shredded social safety nets, an urgent message for our dark and austere political moment; it is also a story of enduring love, and the way that loving someone with a disability can change your world. Like Marianne Leone’s Knowing Jesse, this bracingly unsentimental book is moving, illuminating, and deeply rewarding.”—Michael Bérubé, author of Life as Jamie Knows It (Beacon Press 2016) and the former president of the Modern Language Association (MLA)
“The book is STUNNING. So eloquent and full of wisdom—and a certain tragicomic humor—I loved it. . . . The moral force of it is unquestionable—so real and overpowering but also unassuming in a lot of ways.”—Terry Castle, author of The Professor (HarperCollins 2010)
“Gabbard describes with intelligence, knowledge, and feeling life with his profoundly disabled son August. . . . A must read for anyone interested in life’s challenges and how complexly these are met and understood.”—Lennard Davis, author of My Sense of Silence and the editor of five editions of The Disability Studies Reader
“If you have ever questioned the very foundation of your beliefs—you will want to read this book. If you have been misjudged, mistreated, misdiagnosed by the medical establishment— you will want to read this book. If you have been caregiver for someone with disabilities—you will want to read this book. But most of all, if you have loved a child beyond measure, beyond compare: you must read this book. Chris Gabbard takes us along on his family’s fourteen-year journey with August, his beautiful, beloved boy, who is also profoundly disabled. With clarity and grace, Gabbard describes the utterly indescribable, bringing it to life on the page. Early on in this haunting and moving book, Gabbard says “When intertwined, love and grief become as ferocious as desire.” As you turn the pages, you will come to understand precisely what he means.”—Andrea Lunsford, author ofThe Everyday Writer (Bedford/St. Martin’s 2016)
“A Life Beyond Reason makes a strong case for the argument that neither length of time nor cognitive and physical abilities are the true measure of a child’s life. Author Chris Gabbard’s account of the birth, life, and death of his son August’s relatively brief life leads the reader through the many questions, choices, and frustrations that parents of a children with severe disabilities face. More importantly, however, it allows readers into the daily life of a child who is able to compel love and to reciprocate. Neither a tale of overcoming nor a plea for pity, A Life Beyond Reason is candid about the difficulties Gabbard and his wife faced, while ultimately embracing the unexpected trajectory that it set their life together on.”—Michael Northen, former editor of Wordgathering: A Journal of Disability Poetry and Literature
“Gabbard deftly explores the fraught, overlapping territories of caregiving, parenting, disability, and medicine. Loving and unsentimental, the book—despite its weighty subject matter—has a kind of lightness, a hard-won calm. Gabbard is the scholar of his own joys and despairs, both passionate and dispassionate at once; and in this retrospective . . . he finds insight into himself, his family, and what it means to be human.”—George Estreich, author of Fables and Futures (The MIT Press 2019) and The Shape of an Eye (Penguin 2013)
“While investigating his son’s traumatic birth, a father finds not only meaning but also joy in the profoundly disabled life that followed. This book movingly reconfigures questions of human worth and care, and it envisions a different role for medicine in the field of disability. Less elegy—the son eventually dies–than encomium, A Life Beyond Reason invites you to bask in its heartening warmth.”—Ralph James Savarese, author of See It Feelingly (Duke Univ. Press 2018) and Reasonable People (Other Press 2007)
“A compelling chronicle of one father’s relentless quest to understand the circumstances around his son’s ‘catastrophic’ birth and ‘hospital-acquired disability.’ Gabbard details the toll of his family’s journey—from the harrowing, Kafka-esque foray into the ‘bowels of American medicine’ to unflinching, sometimes poignant, and often humorous scenes of caring for the boy, who becomes the North Star by which Gabbard grows as a person and as a father. This insightful account is offered in that very spirit–a fitting tribute to August’s short but meaningful life–inviting the reader to ask ‘what is personhood?’ and to understand that we each have our “own particular way of being in the world” and ‘a right to remain’ in it.”—Leza Lowitz, author of Up from the Sea (Crown Books 2016)
“Gabbard is a detective confronting the most wrenching of all mysteries as he attempts to make sense of the chain of medical errors and misjudgments that caused his son August to be born with profound disabilities…. Gabbard also writes with wit and humility about how caring for August prompted him to reexamine his deepest assumptions about the value and purpose of a human life. This book should be required reading for parents, caregivers, teachers and doctors.”—Rachel Adams, author of Raising Henry (Yale Univ. Press 2014)
“Chris Gabbard’s emotionally penetrating yet unsentimental memoir will resonate most strongly with parents of disabled children. Yet all readers will share his righteous rage at the uncaring, overburdened medical professionals he depicts, while standing in awe of his and his wife’s steadfast caregiving and of his son August’s courage. This profound and profoundly moving book testifies to the soul-shaking power of unconditional love, which transforms a tragedy into a life to be treasured.”—Mark Osteen, author of One of Us: A Family’s Life with Autism (Univ. of Missouri Press 2010) and editor of Autism and Representation (Routledge 2010)