I’ve recently been following a conversation, on various web forums, about women and disability and poetry (not necessarily in that order). This discussion was partly catalyzed by Jennifer Bartlett’s essay on feminist poetry on the blog delirious hem. In her essay, Bartlett writes about some of the prejudices and mistreatment that she’s faced as a woman with cerebral palsy. She also conveys her sense of betrayal that feminist political and literary movements have failed to take seriously, or even notice, disabled women’s issues. Bartlett also asks for comments on the intersections between gender oppression and disability oppression, and between feminism and disability rights.
From there, the discussion has migrated in various directions, including onto a listserv about women and poetry to which I subscribe. Interestingly, some tension has developed between people who view disability as a social construct, in which social barriers turn impairments into liabilities and limitations, and those who want their experiences of bodily suffering to be acknowledged. A related argument concerns the distinction between “disability” (conceived as stable, nonmedical, political) and “disease” (disruptive, painful, personal).
None of these arguments are new to me. For decades, the disability community has squabbled over the extent to which disabilities are experienced as inherent problematic biological conditions, or strictly as a social minority status. We’ve also debated whether to distinguish sharply between disease and disability, resisting their conflation as a symptom of medical colonization of our lives; or to embrace chronic and acute illness as another dimension of the disability experience.
These are, for the most part, dynamic and healthy debates. By questioning and challenging each other, we clarify our understanding of this complex phenomenon called disability.
Dichotomies can become destructive, though. Each side’s insistent purity may eclipse the other side’s valid insights. Arguments can become dogmatic, squeezing out smaller truths incompatible with the larger position. I’ve felt these struggles as part of my own intellectual and political development. I’m adamant about the role of external architectural and policy barriers in limiting our opportunities, far more than our disabilities themselves do. I go so far as to sport the slogan, “Cure Society, Not Me.” On the other hand, I know there are aspects of my disability that entail real physical hardship. I reject clichés like “suffers from spinal muscular atrophy,” and yet there are times — during respiratory distress, for example — when I have to grant that I do suffer, quite apart from the stresses imposed by social structures. And then there are times when it’s not either/or, but both/and — when political and architectural structures interact in varied and complex ways with my body’s weaknesses, strengths, hungers and responses.
For individuals as well as for communities, both tools are necessary: a political framework for articulating one’s relationship to the broader world; and a free, true voice for conveying what wells up from within.
This is why we need poetry. Ultimately, dichotomies can’t be resolved by turning up the volume, drowning out disagreements and inconsistencies. To get anywhere near a truthful representation of our lives, we need nuance, texture, color, smell. We need open-ended questions, unexpected answers, unlikely combinations. We need prickly, messy, mundane details, rendered in words as fresh as rainfall. We need the wheeling narrative, the dust-flecked sunlit lyric. We need to gasp, giggle, moan and groan, curse and pray. We need to fulfill the “task” that Virginia Woolf assigned to poets, in her 1932 essay “Letter to a Young Poet” — “to find the relation between things that seem incompatible yet have a mysterious affinity, to absorb every experience that comes your way fearlessly and saturate it completely so that your poem is a whole, not a fragment.”
Woolf was right. Life can send us overwhelmingly disparate incidents and sensations. One day’s events call for righteous indignation, the next day’s loss brings tears. And the day after that? Just a day, when nails must be trimmed, skin sponged of sweat, linens changed, prescriptions refilled. It’s up to us as women to take care of business, to name feelings, to lead the charge toward justice. Likewise, it’s up to us as poets “to absorb every experience… fearlessly.” Onto this fragmented life, so sundered by the demands of survival and by competing analyses, we pour artistic integrity, “saturate it completely so that your poem is a whole.”
Women with disabilities, especially, live with all kinds of contradictory experiences. Here are just a few:
*Our lives are largely invisible to the media, to policymakers, and even to many nondisabled feminists; and yet individually we sometimes feel so conspicuous with our obvious differences.
*Like other women, we don’t want to be sexually objectified or exploited, but we do resent it when we are seen as asexual.
*Many of us need hands-on support for daily living, and we also bear responsibilities for supporting children, elders, disabled friends; and although we both give and receive care, society recognizes only our care needs, not our caregiving.
*We would like to earn money and respect using our skills and knowledge, but we are too often kept out of the workplace by discrimination, physical barriers, inflexible schedules, and the fear of losing life-sustaining benefits when reporting earned income.
Why should anyone else care about these particular concerns? More to the point, why would anyone want to publish or read poetry written from the perspective a woman living with disability? In the conversation referenced above, several poets reported having their work dismissed by colleagues or editors as mere “disease poetry,” with the implication that such writing is confessional, self-indulgent, parochial.
If poetry cannot stretch the imagination to share in another’s experience, then what can? I urge all of us, myself included, to ignore any insinuation that our female disabled lives can interest no one but ourselves. Our experiences are as valid as anyone else’s, and our interpretations of our own experiences are certainly more valid than other people’s projections onto us.
And truly, much of the material of our lives transcends demographics. What could be more universal than having a body, and enduring that body’s vicissitudes, answering its demands, discovering its pleasures? I face particular obstacles, from stairs to stares, in maneuvering my body through the world; and writing about these obstacles may illuminate our social spaces in new ways. Who has not, at one time or another, felt imperfect and ostracized? Or felt perfect and accepted, having finally found community?
All of these are part of my experience as a disabled woman. This is the stuff of my poetry.
I just watched this year’s Oscar-winning documentary Music by Prudence, which profiles Prudence Mabhena, a 21-year-old Zimbabwean singer. Growing up with a disability called arthrogryposis, which significantly limits her physical mobility, Prudence has had to defy low expectations and vicious prejudices just to survive. Rejected by her parents and her culture, Prudence finally, literally found her voice when she began to sing. With several of her classmates at a school for children with disabilities in Bulawayo, Prudence has formed a band called Liyana.