Writing on disability is like fine bone china — it demands a certain delicacy. Many disabled writers (or those who choose to write on our behalf) collapse into an artificial jollity, or pathetic bathos — or employ a style too far from the heart.
A worthy writer must show us the good as well as the ghastlies without the chill of unrelieved anger, without descending into fake heroics.
Many of the titles below do not appear in reading lists for college disability studies. More’s the pity: In these books one can find the truth of our world, the reality of the body, the occasional rock-bottom despair of it, and yet, over all, the revivifying spirit of the soul.
Don’t Worry, He Won’t Get Far on Foot, John Callahan (Vintage). This one should be at the top of all the lists. The reason: Callahan is a kick in the pants — feisty, cynical, smart. Years ago, he did cartoons for a Portland, Ore., weekly, entitled “The Lighter Side of Being Paralyzed for Life.” Like all funny crips, his writings and cartoons are peppered with the truth of living with a dysfunctional body 24 hours a day. Our bodies don’t go away, and a writer has to interleave humor with honest grief in what is, after all, our accelerated knowledge of the human condition. My favorite quote: “I felt as if a huge hand had reached down out of the heavens and placed me firmly on my butt in a wheelchair while a voice said, ‘Just sit there and relax for 50 years. Don’t get up, ever.’ The only chance of relief from grief, from anger and from resentment I had was spiritual.”
The Body Silent, Robert Murphy (Holt). Murphy was head of the anthropology department at Columbia University when he developed a spinal tumor. Here we have a scientist looking at a brand-new world he has been handed along with his drastically changed body. This on rage: “Quadriplegics cannot stalk off in high (or low) dudgeon, nor can they even use body language. … They cannot show fear, sorrow, depression, sexuality, or anger, for this disturbs the able-bodied. The unsound of limb are permitted only to laugh.”
FDR’s Splendid Deception, Hugh Gallagher (Vandamere). Long after FDR died, people viewed him as a “recovered” cripple. The schemes used by him and his associates to disguise the true state of affairs (he was a polio paraplegic) were subtle but effective — and the public bought into it. Gallagher claims we all paid a price for this pretense, for Roosevelt’s last days were spent in deep melancholia, which affected the way he ran the country and the decisions he made at the end of World War II.
Still Me, Christopher Reeve (Random). One comes away convinced of Reeve’s honesty and genuineness. The last chapter alone is worth the price of the book: fame and public appearances and world-wide applause mixed with dysreflexia, TED hoses, pressure sores, PICC lines, being dropped during transfers and near suffocations when his breathing tube falls off. He tries magic cures, has out of body experiences, and more than once damn near dies. He survived for 10 years; did so, apparently, without bitterness.
The Diving Bell and the Butterfly, Jean-Dominique Bauby (Knopf). One day Bauby woke up in a hospital with locked-in syndrome, due to which, according to the Merck Manual, “because of motor paralysis in all parts of the body [one] cannot communicate except possibly by coded eye movements.” That’s how he wrote this book — by blinking his one working eye. Bauby died several years ago, but this is a worthy gift he left us.
Rescuing Jeffrey, Richard Galli (Algonquin Books of Chapel Hill). At age 17 Jeff Galli jumped into a friend’s swimming pool and broke his spine. His father, an experienced journalist and attorney, contemplated asking the doctors to remove his life support. Galli has created a spectacular piece of writing, a cliff-hanging mystery — one in which we think a murder may be going to happen … the murder of his own son. It is this rank honesty that sets Rescuing Jeffrey apart from most books on disability’s effect on the family.
Moving Violations, John Hockenberry (Hyperion). It’s Hockenberry’s sometimes angry, always articulate, mostly insightful writing that transforms a specific and personal event into the experience of all of us. “My body had become a puzzle. Solving it was exhilarating beyond the simple imperatives of survival.” He claims to have escaped anger, but his description of tearing apart a New York taxi — the driver wouldn’t fold up his wheelchair — implies otherwise. The writing at times rises to high comedy, especially memories of his early days in the hospital.
Tumbling After, Susan Parker (Crown). Parker’s husband Ralph is a C5 quad after a bicycle accident. In Tumbling After, she manages to convey a fine mix of despair and hilarity and stoicism and soul-cracking honesty — so much so that when I got done I wanted to call her up just to be sure that everything was still OK in her new world there in inner-city Oakland.
Learning To Fall, Philip Simmons (Bantam). Philip Simmons was diagnosed with Lou Gehrig’s disease when he was 35 years old. The book turns into a spiritual treatise, riding on the dual questions: Why would God create such a trauma? And, how can one man deal with such a trauma without going under? For some of us, Learning to Fall has an unfortunate premise — that God sends down bad things to teach us to be good. Despite this Old Testament view, the writing is superb.
A Dynamic God, Living an Unconventional Catholic Faith, Nancy Mairs (Beacon). More than 35 years ago Mairs was diagnosed with multiple sclerosis. Twenty years ago she was walking with a cane. Now she uses a wheelchair full-time. She reports a grudging acceptance, even says that acceptance is a state that can creep up on one unawares. “There was a time — most of my life, in fact,” she reports, “when … mishaps would have triggered hysterics, fury, perhaps even a major depressive episode. … Now I greet each fiasco coolly, quizzically, exasperation tempered by amusement.”
Lorenzo Milam is the author of CripZen: A Manual For Survival and The Cripple Liberation Marching Band Blues.
** This post was originally published on https://www.newmobility.com/2020/08/the-top-10-disability-books-according-to-lorenzo-milam/
