George Bernard Shaw wrote, famously, “All autobiographies are lies.” Put a bit more kindly, all life narratives are constructions. As Hayden White noted of history, it is not so much a question of which facts are selected, but of the narrative that is created to connect the facts1. Life narratives being a species of personal history, White’s observation apply as much to autobiography as to history on a grander scope. This has significant implications for disabilities literature.
The genre of disabilities autobiography could arguably be said to have begun with them Irving Zola’s Missing Pieces: A Chronicle of Living with Disability published in 19822. Since Zola’s work appeared, many quality life narratives have by writers with disabilities have been published including those by Nancy Mairs, Anne Finger, Kenny Fries, Lucy Grealy, Stephen Kuusisto, John Hockenberry, Eli Claire, Floyd Skloot, and Simi Linton. To these, Gary Presley’s Seven Wheelchairs: A Life Beyond Polio (2008) needs to be added.
Like a good story teller, Presley begins the first page of his narrative with the pivotal moment in his life, a polio inoculation that went awry:
Dr. Capetti struck. I felt the sting. Only a sting then, but it was an unspoken promise of pain I cannot describe, even now. I would walk seven days more, only seven days, and then I would be lifted into an iron lung and never walk again.
At seventeen, Presley’s life was set on a trajectory that would change his entire future in ways he had never consider.
The bare facts of Presley’s life from then on can be fairly easily listed: he spent six months in an iron lung in a local hospital in Missouri, he was transferred to Creighton University Medical Center in Omaha for rehabilitation, he returned home to his parents house, he got a job in insurance, both of his parents died, he nearly died himself from neuro-muscular induced sleep apnea, he married a divorcee with children, he converted to Catholicism, and he began writing. As a list, none of these life events, with the exception of the sleep apnea, sounds particularly extraordinary. What is valuable in them is perspective from which he experienced them. As Nancy Mairs said in defense of autobiography as a legitimate genre of disability literature, “experience is all I reliably have that no other reader can give. There are…readers who need, for a tangle of reasons, to be told that a life commonly held to be insufferable can be full and funny. I’m living that life. I can tell them.”3 It is Presley’s access to experience not common to most readers that gives his writing its value.
Presley’s descriptions of his relationship to the technology that cradled his life immediately after the virus attached his system are particularly effective.
The positive pressure machine spews air, clicks valves, spews again. Sixteen times a minute I am reminded that I am no longer whole, no longer a body able to sustain itself and no longer the me who lives within its fleshy organism, its reality.
I cannot bathe. I cannot breathe.
In the lung, I am machine, the brain at its center. I give myself over to its measured beat, and I think, I speak, I sleep. I am secure in the lung, a steel tank, my head poking through its turret to direct all who approach. In the lung, I draw in air to sustain me like every other human being ever born, although as helpless as an armored medieval knight toppled from his horse.
Such experiences, which blur the boundaries of self, give any thinking reader pause for thought about just what exactly it means to be human. It is not much of a leap from some of Presley’s descriptions to the world of William Gibson’s Neuromancer.
Somewhat less surreal but equally curious was the “rocking bed” that allowed Presley to gradually become free of the iron lung for periods of time.
It is the rocking bed I remember most from those midwinter days when the hospital staff began to reassemble my life. Think of the seesaw in a children’s playground. Substitute a mattress atop a metal frame for the board, add an electric motor to accomplish the necessary see-sawing at a regular pace, and you have constructed that miraculous contraption. The pace mimics human respiration rates, dipping head down and then feet down, perhaps fifteen to eighteen times a minute. The ideas is that your stomach, liver, and assorted other internal organs bang against the wall of your diaphragm and compress your lungs as the head of the bed dips. that forces air out, and then, when your feet dip, your compressed lungs re-inflate as a vacuum sucking air.
Two feet up, maybe, and then two feet down. All day, if necessary and all night, to sustain sleep.
The rocking bed passed from the author’s life fairly early on, but the wheelchair becomes his companion for over half a century. In a chapter that unpacks the title of his book, Presley gives an in-depth account of life as a wheelchair user in much same way that a car aficionado might recount the history of cars through his own personal experience. Anyone who thinks all wheelchairs are equal will think differently after Presley’s account. Tongue-in-groove with the evolution of the wheelchairs themselves is the development of Presley’s own attitude toward being a wheelchair user. One interesting insight into the world of wheelchair using is that of hierarchy. He viewed wheelchair athletes as "disability imposters…dual-bodied men and women, half superhero, half crip. " and asks, "Who really has the right to be labeled as a person with a disability? ". Unfortunately, it is a question that is not pursued.
In addition to using the wheelchair itself, Presley provides insights into some of the day to day accommodations that he and other wheelchair users face. One of these is the use of a urinal in public. In chapter twenty, one of the more entertaining chapters in the book, Presley candidly – even gleefully – explains his situation:
Give a man a urinal and turn him loose to depend upon himself, and he thinks differently. He thinks the way I have thought during a good portion of my nearly fifty wheelchair years. "Where in the world can I find a private place to pee, and where can I empty the urinal when I’m finished?"
Of course, Seven Wheelchairs is much more than an archeology of disability technology. Presley has a story to tell, and while it is the retrospective of a sixty-six year old man reinterpreting his past, the emotional and psychological journey that he portrays from cynical disabled youth to philosophic (but still cynical) elder statesman is an interesting one. In the course of this journey he critiques not only the way society (and the medical profession in particular) treats a disabled person, but his own inability to accept himself. Many of Presley’s experiences give him the opportunity to do both.
His encounter with rehabilitation in occupational therapy is a case in point. As a recently disabled teenager, his attitude towards OT was luke-warm at best and, more often dismissive, but in his naiveté he lacked the perspective to ask the right questions. After forty years in a wheelchair, however, he reflects:
The lesson I needed then should have been stated bluntly. You are a cripple. You will never walk again. You will be dependent on the care of others. Cry and complain for a while if you like. That’s normal. Then we will help you find something useful to do with your life.
Presley’s admitted youthful self-pity was inextricably mixed with guilt, a guilt that was very much a product of his relationship with his father, who, if Seven Wheelchairs were to be made into a movie, might be played by Clint Eastwood. While Presley’s mother was the model nurturer, his father was “all steel.” His conversations were monosyllabic and he did not really know how to express his affection. While Presley never doubted that his father loved him, his father valued self-reliance and independence so highly, that Presley could not avoid feeling guilt, that, as the oldest son, he would never measure up. Just as writers like Finger, Grealy and Claire explore the various effects of disability on the female psyche, Presley delves into the ways in which acquired disability takes its toll on the mind of a young male, especially one living in culture of small-town America in the mid-twentieth century. It is a valuable study and one that goes a long way in explaining why, for many men, acceptance of disability is just not an option. Seven Wheelchairs could not have been written by a woman, the lingering scent of testosterone is just too strong.
There is little doubt that Seven Wheelchairs is "a good read", and, of course, that in itself enough sufficient reason to recommend it , but from the point of view of Wordgathering a further question needs to be asked. What is it’s contribution to disability autobiography and to the wider genre of disability literature in general? While there are those4 who argue that because autobiography focuses upon a single life, it is not a legitimate form of disability literature, disability life narrative, together with disability poetry, has perhaps done more to pull disability literature into the pubic eye than any other literary forms and, as such cannot be lightly ignore.
One of the nice ironies of the book is that while Presley’s story is pretty much one of a lone ranger in which the idea of a disabilities rights movement or disability as a social construction is only vaguely hinted at towards the end of the book, when he comes to take on many of the same positions that avowed disability rights advocates do: the hatred of patronization, the insistence upon independent living (as opposed to a nursing home), the transgressive re-appropriation of terms such as "crip" and the portrayal of individuals with disabilities as sexual beings. In words that might have come from a militant disabilities rights activist, Presley states, "For a crip, the root of all independence, which is good rather than evil, is money." The major difference is that while disabilities movements generally put the brunt of responsibility on society and the need to change laws and social attitudes, Presley puts the major responsibility for adjustment on the person with the disability.
In her analysis of disability life narrative, Ann Keefer5 concludes that many disability autobiographies are really just modern Augustinian conversion tales in which the narrator experiences an epiphany, generally one in which he or she realizes that disability is a social construction and not just an individual problem. Presley’s narrative boasts no such epiphany. It is much more of an evolutionary, coming of age tale and in which, in the end, more of less conservative values are reinforced in an essentially Manichean world. On the penultimate page of the book Presley concludes:
The promises made by old me, that boy’s ghost in a man’s body, collapsed uselessly within the uncrossable line, have haunted my for more than forty years. The thing sketched by those lines – left behind within those lines – was me, interrupted, suspended. That creature has grown old along with me, but I like him no better. He has not aged charitably. His bitterness turned to acid, and it can only be said in his favor that he has grown feeble in his rages.
Thus while he does not totally break free of the fiction plot structure that much modern autobiography appropriates, Presley does resist the tale of overcoming. Had it followed the fiction model, the denouement would have come about thirty pages earlier, since the real climax of the book of the book is in chapter 26 which he meets and marries his wife. Instead, Presley nibbles away at the expected structure because, while it may have been more emotionally satisfying for the reader to stop at this point, it would not have included events that Presley needs to relate in order to establish the viewpoint from which he now looks back and tells his story. And it is his story to tell. In Presley's own words, "I cringe at the idea of being robbed of my conception of the person I have constructed in this decades-long building project." It is in this respect that Shaw and White were right.
Seven Wheelchairs: A Life Beyond Polio was published in 2008 and is available the University of Iowa Press. Learn more about Gary Presley at his website: http://www.garypresley.com. An excerpt of Seven Wheelchairs can be seen in the December 2008 issue of Wordgathering.