Laura Hershey: Writer, Poet, Activist, Consultant Rotating Header Image

Women and Disability

“Music by Prudence” Profiles a Powerful Voice

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.

With subject matter like this, some filmmakers would turn out a sappy story of overcoming personal tragedy through cheerful courage. But director Roger Ross Williams has made a film that’s more complicated, and far more interesting. Prudence herself is no plucky poster child. She’s angry — understandably so — even unforgiving of the parents and others who gave up on her when she was just a child. (On the other hand, she honors the grandmother who loved her, raised her, and taught her to sing.)

And Prudence does not succeed strictly through individual effort. She’s surrounded by her friends and bandmates, all young people with disabilities. In the film we see them encouraging and supporting one another. They laugh together, travel together, and create together. They express to each other their rage against the oppression inflicted on them, often by their own families. Even their clothing conveys solidarity and challenge: In several scenes the musicians sport, like cheeky uniforms, T-shirts that simply say, “SO WHAT?”

This is not an easy movie to find, unless you’re an HBO subscriber; it premiered there last week, and will be broadcast throughout this month. The DVD has not been released yet. The movie is playing at a few film festivals around the country, and you can purchase and download the soundtrack from iTunes, Amazon, etc. My advice: See it; hear it; pass the word. Get more information at the Music by Prudence official movie website.

As for myself, I’m adding Music by Prudence to my list of all-time favorite disability-related documentaries.

How to Respond to Hate Violence?

In memory of Dorothy Dixon, Jennifer Daugherty, and countless others….

I can’t find adequate words to express my revulsion, outrage, sadness, and fear at reading about the brutal murder of Jennifer Daugherty, a Pennsylvania woman with an intellectual impairment. (Warning: That link will take you to a news article which includes sickening details that may disturb and trigger some readers.)

I’ve written before about hate crimes targeting people with disabilities, but not much. It’s one topic about which I feel inarticulate, often lacking in insights or ideas. Perhaps it’s because I really can’t get inside the mind or heart of someone who would commit such deliberate acts of torture against someone they perceive as “abnormal.” Perhaps I don’t even want to try. Also, hate crimes against disabled people have been rendered largely invisible in the media, so that any writer broaching this topic must push through several layers of disbelief. People literally doubt that such things happen. Or, they may express anger at the occasional incident, like this latest killing, but not be willing or able to see it as part of a larger system of oppression based on disability.

The six individuals alleged to have participated in this atrocity bear the biggest share of blame. I can only speculate that their actions arose out of some unimaginable combination of sadism, cowardice, fear of difference, deep discomfort with their own human vulnerability, and mob mentality.

This is by no means an isolated incident, however. And it didn’t happen in a vacuum. I would argue that social conditions helped make this crime possible. Aside from being outnumbered six-to-one, Ms. Daugherty had far less power than her perpetrators. Despite what sounds like a supportive family, she lived in a society that separates disabled people from their nondisabled peers — in school, in community groups, in “special” programs of all kinds. She may have had few opportunities to learn personal safety skills or self-defense. Many of her previous interactions with nondisabled people may have been characterized by prejudice, discomfort, rejection, and/or teasing, all based on the negative stereotypes perpetuated by media, and by widespread scorn for those labeled “retards.” So that by the time Ms. Daugherty became involved in a community center, and met some people who pretended to be friendly to her, she was probably so eager for connection that she failed to recognize, or overlooked, any warning signs. This cannot be blamed on her own personality, or on her cluelessness, or on her disability. Her history of segregation and of limited choices set her up for it.

It’s one thing to mourn this woman’s terrible death, and to analyze its roots. But I’m left wondering how else to respond. First, I call on all disabled women to join in expressing solidarity with Jennifer Daugherty, anger at her killers and at the social conditions that disempowered her, and determination to fight with all our sisters against oppression and violence.

Second, I invite all people who care about nonviolence and justice — feminists, human rights activists, and others — to connect the dots, to recognize this and other disability hate crimes as manifestations of serious power imbalances based on disability oppression.

Third, I call on the legal system to ensure equal treatment under the law for Ms. Daugherty. Don’t let society’s devaluation of disabled people follow her into death. Her so-called “vulnerability” is not the point; her minority status, targeted by the perpetrators, is the point. There should be no doubt that this is a hate crime. It should be prosecuted as such.

Fourth, I call on educators to instill in all their students the ability to celebrate all kinds of differences. Model respect and self-respect. Intervene in situations where children are bullying or shunning each other. Teach and support healthy friendships.

Finally, I call on journalists, writers, poets, and other cultural workers see and hear what is happening to too many members of our community of people with disabilities. Name these crimes. Honor those who are targeted, as valuable people whose lives mean something. Avoid clichés that emphasize the victims’ weakness. Focus instead on the reasons why this happens so often. Refuse to accept it.

Women and Disability and Poetry (Not Necessarily in That Order)

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.