In our late-stage capitalist society, we tend to define a person as a series of performances and/or productions. Personal worth is often measured in terms of either material possession or material productivity. In such an economy the person who produces differently is fundamentally stigmatized. Yet the reverse is also true: disability becomes an invaluable means of illuminating the broader problems inherent in this view of human worth.
Questions of disability speak directly to questions of what it will take to forge a more just social structure. Why? Because many in the “abled world” see in people with disabilities their own anxiety around production and performance made manifest. As Jennifer Bartlett writes in Beauty is a Verb:
to be crippled means to have
access to people’s fear
of their own eroding
Considering our society from a disability perspective forces the question of why we seem so bent on forging a society in which so many are marginalized, stigmatized, or deemed somehow unworthy. How might a disability perspective act to address this?
In his essay “Keeping the Knives Sharp,” author Jim Ferris writes:
Symmetry is a fundamental principle of human endeavor as we see it, and we seek it, all around us: in nature, in our bodies, but also in the things we humans make…. But what would it mean to have a different starting point, a different foundation, a different center … or to have no center? What would it mean to live in a world that understood asymmetry as a prime characteristic. To live in a world sensitized by a crip aesthetic…
As Ferris suggests, engaging seriously with a disability perspective leads one to grasp asymmetry as a fundamental principle—to surpass one’s own prejudices and expectations.
Asymmetry in Poetic Practice
Through the process of editing and producing Beauty is a Verb: The New Poetry of Disability, a collection of poets with disabilities that focused on poetics as well as disability, we three—Jennifer Bartlett, Sheila Black, and Mike Northen—had the opportunity to explore where this embrace of asymmetry can lead in practice.
As editors, we come from varied backgrounds and experiences with disability, so the issues we dealt with mimicked those of the varied writers included and the multiplicity of approaches to disability poetry they represent (including well-known authors with disabilities who did not want to be brought under a disabilities umbrella). Working with such a range of writers educated us about what it might mean to have a truly accessible (or universal design) society and all the ways people can be impaired socially as well as physically.
Just as we were pleased that there is no one aesthetic style or rule in the writing of poetry of disability, we came to learn that there was no one size fits all “solution” to the reality of disability and how it impacts people’s lives—at least no material solution. What emerged, rather, is that central to any genuine disability perspective is a respect for the multiplicity of bodies, capacities, and experiences as worthy in and of itself.
Stigma and the Social Construction of Disability
In creating the anthology, we were eager to explore how—and how variously—disability might impact poetic practice. Indeed, one of the hard and interesting questions we grappled with was who is considered “disabled” and why, what does “disabled” mean? This is not as straightforward a question as it might appear. We made a decision to focus on writers with visible physical disabilities because we were interested in the social construction of disability. As opposed to the medical model, which sees the disabled body as something abnormal (or other), the social model explores the interaction between the body and society, arguing that it is society itself rather than the specific impairment that is disabling—for example the decision by a society to put stairs rather than a ramp at the front of a building. One question we had was, to what degree did the social view of disability shape the self-perceptions of our contributors?
While our contributors’ writings were very distinctive, their stories were often similar. Many described being socially excluded—being stared at, teased, or imitated. Many spoke of being placed into some kind of institution or segregated school. Almost all spoke of the difficulty of gaining accommodations without taking great pains or making a fuss. No doubt some of this has improved since the passage of the Americans with Disabilities Act in 1990, but the foundational sense of being marked as different or somehow “lesser” is still a central part of the disability experience. Raymond Luczakdescribes his situation before he learned American Sign Language (ASL):
Once my hearing loss was diagnosed when I was two and a half years old. I was instantly outfitted with a bulky hearing aid. Sign Language was forbidden. I learned to speak. I didn’t realize until years later how much I wanted to sing instead.
Luczak contrasts the outside view of his deafness, which is entirely negative, with his own internal view in which deafness is a quality that helps him to be attentive and better “listen to” the world around him:
With the gift of deafness, you learn to listen better than anyone. It has nothing to do with sound, and yet when you pay close attention to everything but sound, it does…
The hearing world believes that deafness has nothing to offer. As a result, Luczak was isolated for most of his childhood because in the minds of his caregivers his best option was to learn to speak like a hearing person. His isolation was only ameliorated when Luczak discovered ASL on his own:
Using ASL freed me at last. Being able to understand completely what was being said gave me invincible wings.
It enabled me to have the courage to look different and not worry about other thought of me.
Most people will experience disability at some point in their lives—either through accident, aging, or because someone close to them—a child, a spouse, a parent, or a close friend—has a disability. Yet, for such a common situation—if we may use that word—disability spawns remarkable discomfort. In 1963, sociologist Erving Goffman, who was then teaching at the University of California, Berkeley, wrote:
By definition, of course, we believe the person with a stigma is not quite human. On this assumption we exercise varieties of discrimination, through which we effectively, if often unthinkingly reduce his life changes. We construct a stigma theory, an ideology to explain his inferiority and account for the danger he represents, sometimes rationalizing an animosity based on other differences such as those of social class.
While the notion of “disability” as “stigma” is outdated, the experiences of our contributors suggests that disability still produces a nexus of anxiety in the able and abelist world.
Pushing Back Against Stereotypes
In literature, stigma often translates into tropes and stereotypes. While negative stereotypes are obviously something that we hoped to counteract in Beauty is a Verb, overly positive stereotypes can be detrimental as well. The image of the “supercrip” or a person who appears to let nothing hold them back and "rises above their disability" is nearly as problematic an image as the pejorative one. Whether an individual is being considered "less than" or put on a pedestal, the outcome is a refusal to see the person as an equal. Disability becomes something that has to be bravely overcome rather than an alternate way of living in a body. In either case, the effect is to say, “They are not like me, so I don't have to deal with them.” As contributor John Lee Clark asks in his poem, “Dead Blind: Three Square Cinquains,” “Can’t I pick my nose / without it being a miracle?” He adds only half-facetiously, “Helen Keller is to blame.”
Another contributor, Kathi Wolfe, also blind, describes in her essay “Helen Keller: Obsession and Muse” how as a child she constantly had the iconic image of Helen Keller held up to her when all she wanted was to be an average kid. Wolfe has made it a project, exemplified by the four poems included in the anthology, to knock Keller off her pedestal by countering the hagiographic stereotypes with provocative images that engage the reader in imagining and revisioning Keller’s life.
This push back against sanitized images of disability that runs through the work of many of the authors in Beauty is a Verb is neatly expressed by the title of Harilyn Rousso's recent autobiography, Don't Call Me Inspirational. Yet, in reading from our anthology, we have frequently experienced, even among putatively sophisticated college audiences, someone coming up to us and saying, "That was so inspirational!" Perhaps it is because of this reaction that none of the great poetry included in Beauty is a Verb calls itself or aspires to be "inspirational."
Spirituality and Disability
Related to this resistance against the “inspirational” is a noticeable dearth of explicitly theistic poetry in Beauty is a Verb. The lack of reference to God or faith may also be a reaction to the ways in which conservative forms of religion have named God as the one responsible for causing and curing disabilities, therefore working at cross-purposes with activists seeking to change social perceptions and conditions faced by people with disabilities.
There is another reason that overtly religious poetry may be scarce among writers with disabilities. The concept of disability as a punishment from God for some sin or as a Job-like test to be borne has a deep history in literature. As Jillian Weise points out, quoting David Pfeiffer's observation about prevalent attitudes, "Disability is seen as a personal tragedy, a disgrace to the family, and/or, a punishment from God."
In "River Creature," poet Anne Kaier cites an incident in her childhood that reflects this notion:
Two boys on bikes pedaled by, then slowed, swerved and circled back. One leaned forward yelling, "Look at that girl," to his pal, "her face, man - that's a sin!"
Kaier’s parents went so far as to take her to Lourdes to be cured. No surprise then that, in grappling with what she wants her poetry to be, she writes, "I knew what attitude I did not want to profess ... No nonsense about how God or some wise power gave me this disease for some greater benefit."
This is not to say that the poems in Beauty is a Verb are devoid of religious exploration. Tom Andrews’ poem "The Hemophiliac's Motorcycle," a Christopher Smart-like psalm, is profoundly religious by almost any criterion. Andrews’ approach to solving the disability-as-penance issue is to instantiate God into the corporeality of Andrew's own supposedly defective body:
I want to hymn and abide by, splendor of tissue, splendor of cartilage
splendor of the taillike spines's desire to stretch as if fills with blood.
And he adds, "may He adore each moment alive in the whirring world," because the world is an ultimately incomprehensible flux in which no one has the right to declare what is "normal" and what is not.
Another poet in Beauty is a Verb whose work possesses a religious sensibility is Brian Teare. Teare begins his essay "Lying Meditation" by saying "I'm not a practicing Buddhist, but the longer I live with two chronic diseases, the more often I turn and return Buddhist theology and poetry as ways of helping me to conceptualize and accept the unpredictable." He adds a bit later, "One thing for certain: the alleged boundary between ability and disability is as pernicious a fiction as the alleged boundary between mind and body in Western culture." As he notes succinctly in "The Sickbed Goes all the Way to Heaven":
Like Andrews’ poetry, Teare's poetry is an exploration of the spiritual impulse in the context of physical disability, but it is worth noting that neither refers to their work or themselves as "inspirational."
Encountering Others’ Souls
Thanks to connections made as a result of putting together Beauty is a Verb, Jennifer Bartlett, as part of a graduate student outreach program at a public hospital in Roosevelt Island, New York, got to meet a poet whose numerous disabilities had been exacerbated by a recent stroke. As a consequence, she was unable to move any part of her body, except her eyes, and her left toe. Nevertheless, she communicated—and wrote poetry—through diligently pointing to a chart with letters while the graduate students recorded each letter.
This story is much like the one recounted in The Diving Bell and the Butterfly by journalist Jean Dominique Bauby with one enormous difference. Unlike, Bauby, the poet was not a rich person, not an ex-Elle editor; she was merely an ordinary person, impoverished, living in a public hospital. Bartlett was struck by the poet’s tremendous persistence in writing her poems, communicating herself through every means she could.
What can be learned from this experience? In Bartlett’s words “how to appreciate people at and for their deepest self: some might call it the soul.” The lesson Bartlett felt she learned was that everyone is capable of relating to others, you just have to locate the window into a person’s way of relating.
It is not uncommon for people to think or sometimes say, “I would rather be dead than be like you” about people with severe disabilities. But what does this view of “quality of life” say about our society? How can one person judge the “quality of life” of another, and what is the litmus test?”
After editing Beauty is a Verb, the three of us found ourselves questioning the standard view of people with disabilities and exploring the concept of the soul as a thing that surpasses the body and mind. Do people with severe cognitive impairments have souls? Surely they do. There is always that thing “in there” the thing that makes us human. From the perspective of virtually any world religion you chose—whether Judaism, Buddhism, Hinduism, or Catholicism—no one body, no one mind is more worthy than another just as no human being is more worthy than another.
Editing Beauty is a Verb was a life changing experience for us. We learned new ways of looking at poetry, disability, and the body. Working with people of all kinds of abilities expanded our perception of spirituality by teaching us that just as difference is often inscribed on the body itself, also inscribed on the body is the experiential knowledge that forms a core of what we think of as true spiritual practice—a regard and even reverence for the shared life of the body in all of us. We learned that experience carries a sense of wonder and mystery in part because each body is unique and that this is something that can and should be celebrated. This perspective on how body informs spirit is at the heart of disability culture and throws into question the ethics of demanding that each body be considered purely in terms of its productivity, its adherence to so-called “normal” standards.
In putting together Beauty is a Verb, we learned, among other things, that standards of “normal” oppress not only the disabled, but also the “temporarily abled,” forcing everyone to consider themselves less as a body than as a series of productions or performances. Viewed this way, truly looking at and thinking about disability can be liberating.