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

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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.

More about Haiti and Disability…

I wrote last week about Portlight Strategies Inc., which is mobilizing aid to Haitians, especially those with disabilities, in the aftermath of the earthquake. Portlight is continuing to collect emergency supplies and equipment, for shipment from Atlanta to Port-au-Prince. The group still needs money and publicity to carry out its important work. If you want to help, click here or call 843-817-2651.

The U.S. disability community has rallied to try to assist our Haitian counterparts. My friend T.K. Small, a Brooklyn attorney with a physical disability, has spent many hours during this last week making phone calls and writing e-mails, educating and urging people to support Portlight. Dozens have responded, and have spread the word even further. In addition, the Institute on Disabilities at Temple University has launched a Haiti Disability Response effort, in conjunction with Portlight, to obtain priority items such as crutches, walkers, canes, splints, ramps, and medical supplies.

Meanwhile, another major development is happening with the Haitian disability community: It is growing exponentially. Amid all the deaths, a still untold number of residents are surviving with serious injuries, such as crushed arms and legs, and infected and gangrenous wounds. Doctors, operating under incredibly difficult conditions, have had to amputate limbs from as many as 200,000 people. These doctors have been saying that the earthquake is creating “a generation of amputees.”

Life with a disability is extraordinarily difficult in Haiti, according to some accounts. A report in the St. Petersburg Times quoted a nursing student who lost a leg after a wall fell on her: “There is no place in Haiti for people like me. Without my leg, I am a freak. Cripples are rejected here. I was going to be the first person in my family to make it out of poverty, but now that’s over. An amputee is not allowed in school.”

I never like to generalize about other cultures’ views about disability. Instead, I prefer to listen to the voices of disabled people who live within those cultures, and who have developed their own analyses of the issues and the context.

However, it’s a fact that disability experiences are shaped by social conditions, and it’s hard to imagine conditions worse than what Haitians face now: crushing poverty, mass homelessness, food and water shortages, and devastated infrastructure. We still need to pay attention to, and support, the short-term needs of a people and crisis — but we must also think long-term about the rights and well-being of this new “generation of amputees,” as well as Haitians with other physical and mental disabilities.

One group that will contribute significantly to disabled Haitians’ quality of life — as it has brought positive benefits to many other countries — is Whirlwind Wheelchairs International. Whirlwind has earned international recognition for designing wheelchairs that can move through difficult terrain, and can be repaired easily using readily available materials. In various parts of Africa, Asia, and Latin America, Whirlwind has helped establish workshops that train and employ disabled people to build the chairs for their communities. Whirlwind’s work is philosophically sound, person-centered, and pragmatic. Now, Whirlwind is raising money to ship wheelchairs from its Mexican factory to Haitians who will need them.

Americans should continue giving generously, and always respectfully. Let’s not leverage our largess to lecture Haitians on the proper attitude toward disability. Let’s ensure that our aid programs don’t discriminate, or deny access, thus aggravating disabled people’s isolation.

The growing number of Haitians, on one hand, may mean increased hardship and financial costs to individuals, families, and society as a whole. On the other hand, it may also lead to increased awareness, acceptance, and integration. Disabled people will never again be (if they ever were) a tiny, hidden minority. Every family, every neighborhood, will have members who are disabled. Out of this prevalence may grow solidarity.

Judi Chamberlain (1944-2010), Activist, Author, Global Traveler — In (Some of) Her Own Words

Judi Chamberlin passed away a few days ago, leaving a legacy of activism, truth-telling, and leadership. She was a highly respected founder of the movement for civil rights for people with psychiatric labels, and for all people with disabilities and chronic illnesses. She had recently kept a regular blog called “Life As a Hospice Patient.”

I didn’t know Judi well, but I was fortunate to be able to interview her for my 2005 book, Survival Strategies for Going Abroad: A Guide for People with Disabilities. She shared the wisdom she had gained from her own international travel experiences, journeying throughout Eastern and Western Europe, Australia, New Zealand, Japan, and other destinations. She gave speeches, and consulted with grassroots psychiatric survivors’ projects, and carried out advocacy activities related to her role as a board member for Mental Disability Rights International.

Her close friends and colleagues are posting many moving remembrances and tributes in honor of Judi’s life and work. Even the national media has taken notice, with stories on National Public Radio and in the Boston Globe. I would just like to share some of her own statements, from my interview with her, about traveling and working with the worldwide disability rights community.

During the interview, Judi recalled one of her earliest global traveling experiences — a long, miserable flight to Australia. “There was a point, about halfway through the trip, when I thought, ‘I just can’t stand this.'” When she finally arrived, she remembers being “just totally exhausted, totally wiped out, nonfunctional.” But her ride from the airport, with fellow human rights activists, turned her mood around completely. “We got in the car and started driving toward Melbourne. Within five minutes, it was like we had known each other all our lives, because we had such an intense common frame of reference.”

Since then, Judi told me, her own mental health issues never really posed a barrier to her globetrotting. “I’ve never gotten depressed while I traveled,” she said, adding with a laugh, “I’ve gotten depressed when I came home!” In contrast, her chronic lung disease sometimes created problems for her, such as when traveling to high altitudes or polluted environments.

In her travels, Judi always met with other psychiatric survivor advocates, where she always found a very supportive environment. “It’s really important to know that there are psychiatric survivor organizations in every country and to try to make contacts with them,” she said.

I asked what advice she would give to others planning to go overseas. She answered:

“The biggest thing for people with a psych disability who think that they might have some sort of stress-related episode or whatever, would be to learn in advance as much as you can about what kinds of support systems you can set up. If people are not familiar with psych disability and you say to them, ‘I’m just terribly depressed, or in having an anxiety attack, or I’m beginning to hear voices,’ if people are naive about it, they might send you to a hospital — not where you want to be in another country.

“I’m not sure the U.S. Embassy would be terribly helpful, because they have the same ideas as anybody else — that if you’re in the psychiatric system, you probably need to be there. That’s why I think it’s really important, there’s an ex-patient group or an advocacy group — or in the absence of that, just some sort of disability group — that you know about in advance. If you deal with these things on a repeated basis, and and are afraid it might happen to you when you’re abroad, you probably have some kind of self-care plan. And if you’re staying with a host family, you should be able to discuss it with them, preferably before you get there rather than after — ‘ Look, sometimes what happens to me is this. And what helps me at these times is this.’ Set up your support systems in advance, even if you’re never going to need them.”

I asked Judi whether she would recommend disclosing mental health diagnoses or other invisible disabilities when applying to travel abroad programs. She commented:

“Some people have a psychiatric history, but they’re not frequently dealing with any psychiatric symptomology. So they have to weigh the stigma factor against any benefit. If a person thinks it’s likely that while I’m abroad I might get anxious or get depressed, and might act in some ways that people might not understand, then it might be a good idea to set something up in advance.”

I asked her to talk about the similarities and differences among the different places she had visited, with regard to psychiatric survivors’ issues. She said:

“It’s interesting — wherever I go, people say to me, ‘In this particular country’ — wherever we happen to be — ‘the problems of stigma are much greater than they are anywhere else.’ It always makes me laugh. The problem of stigma, the perceptions of people with psychiatric disability, are the biggest obstacle that we face. It may vary in its cultural context a little bit, but it really doesn’t differ all that much from one country to another. People with psychiatric disabilities are very widely perceived as being unable to care for themselves, and being fundamentally different from other people; and legally they are disadvantaged in that they can’t control their own lives in the ways that other people can. This is very, very cross-cultural.”

While the stigma and oppression exist all around the world, so does the solidarity. Judi said:

“I really feel that there’s a unity among psychiatric survivors that just transcends language and culture, so if somebody wants to feel grounded they should definitely try to find some of those folks, in advance, before they go. Get some names, get some contacts.”

How to Help Haitians?

“Haiti Rocked by 7.0 Quake.” I read the news as I sat in the waiting room at Children’s Hospital, checking the New York Times website on my laptop computer. Of course I was worried about my daughter, going through a surgical procedure that was minor but nevertheless required general anesthesia. Now, less than 24 hours later, she’s fully recovered, while the reports from Port-au-Prince and surrounding areas get worse and worse. I look back to yesterday, and recognize the extraordinary privilege I was enjoying, even during that stressful afternoon. My child was getting excellent medical care, funded by the Children’s Medicaid program. I knew where my friends and loved ones were; some were with me, and some were sending me words of encouragement through the Internet. And I was in a building which (besides offering a wireless connection) stood on solid ground, with safety and stability engineered into its very structure.

Like everyone, I want to do something, however small, to help support the survival and recovery of the Haitian people. All I have to offer is a little bit of money. So where should I send it? There are a number of fine organizations that are now, or will soon be, working on the ground to help heal and rebuild. There are other groups that might waste donations on excessive administrative costs or poor management. As a member of the global disability community, I am committed to ensuring that my donation will benefit disabled people, as well as others. I won’t let my uncertainty delay my contribution, which is tiny enough, so I did some quick research, both about Haiti itself, and about current relief efforts.

Haitian Novelist Edwidge Danticat described a little bit of her country’s history on today’s episode of Democracy Now: its founding as the first black republic in the western hemisphere, followed by the refusal of many other countries to recognize its independence; also its crushing international debt and resulting poverty. Haiti has endured colonialism, economic oppression, hurricanes, and social turmoil. This earthquake, said Danticat, “seems like the abyss of a very long and painful history of natural and political disasters.”

In the context of such a desperately poor society, people with disabilities have few opportunities for health, integration, and safety. According to one source I found, this small country’s population includes around 800,000 disabled people.

Disabled children, in particular, are often sacrificed for their families’ economic survival. According to the United Nations, as reported last year by the BBC, many of Haiti’s 200,000 children with mental or physical disabilities wind up living on the streets — or in orphanages, which is often worse. A UNICEF official is quoted as saying that only a quarter of Haiti’s 600 child care institutions are legal, and subject to any monitoring. In the others, children are often abused physically, sexually, and mentally.

Natural disasters always exacerbate these kinds of pre-existing social atrocities. And unfortunately, relief efforts don’t always take into account the needs of people with disabilities. I was glad to hear that Habitat for Humanity is already planning to go in and help low-income Haitians rebuild homes. However, as I was reading through Habitat’s website, I was disappointed to discover that their commitment to building homes accessible to people with disabilities, adopted several years ago in response to accessible housing advocates, applies only to homes they build in the United States. No such policy extends to their international projects.

So how best to help? There are the tried-and-true non-governmental organizations that do outstanding humanitarian work, and that are already mobilizing to provide aid in Haiti, including:

Medicins Sans Frontieres / Doctors Without Borders
http://www.doctorswithoutborders.org/index.cfm

UNICEF
https://secure.unicefusa.org/site/Donation2?df_id=6680&6680.donation=form1

Oxfam
https://secure.oxfamamerica.org/site/Donation2?idb=1826472882&df_id=3560&3560.donation=form1

Also, friends and other people I respect have recommended the following:

The Lambi Fund of Haiti
http://www.lambifund.org/

Partners In Health
http://www.pih.org/home.html

I was looking for a more disability-specific group, with the necessary infrastructure and integrity to provide effective assistance. Then I got an e-mail from my fellow advocate, Paul Timmons, who announced that Portlight Strategies Inc., an organization he’s worked with for some time, is now mobilizing to provide medical equipment, shelter, and food for people with disabilities in Haiti. Portlight helped a lot of people during the Gulf Coast hurricanes over the last few years. They are preparing to send a container full of equipment and supplies to Haiti in the next few days. They are also working with a community of Catholic nuns in Port-au-Prince who will be opening shelters. Portlight needs money to help pay the costs of shipping the equipment, and to buy food and other shelter supplies.

So that’s where I sent my measly fifty bucks. I would feel fine about supporting any of the other organizations listed above, and would be interested in knowing where readers of this blog are sending their support. Feel free to post comments, along with links to worthy organizations.

Machines

I woke up with this thought today, and decided to write it down, illustrate it, and put it out there in cyberspace.

I'd rather have a machine breathe for me...

New Year Blue Moon

New Year Blue Moon

Blue moon isn’t blue.
It’s the pink that white becomes
when mixed with city light and smog.
It starts as a smudge behind bare trees.
Add a dash of nostalgia,
a pinch of anticipation.
Then chill. Serve
faithfully, even when the moon is new, invisible,
and the year is old, less promising.

A Writer’s Resolutions

It’s 2010, which sounds weirdly futuristic, but nevertheless here we are. The imagined future has once again surprised us by becoming the lived present. Time to embrace the calendar by making short-term promises to ourselves.

In no particular order, here are a few of my resolutions:

*I resolve to write down poetic lines when they come to me, rather than thinking I can hold them in my head until I “have time” to turn them into a real poem.

*I resolve to write at least a little bit each day — poem, blog, journal, essay, whatever — even when I don’t “have time.”

*I resolve to complete my almost-completed collection of essays, think of a better title for it, and actively try to get it published.

*I resolve to communicate more with fellow writers, sharing critiques with generosity and gratitude. (If this applies to you, feel free to hold me to it!)

*I resolve to complete oral history interviews with both of my parents.

*I resolve to submit more work to literary magazines.

*I resolve to keep living a life rich in material for writing, even if it leaves me less time for writing.

I surely recognize that the above resolutions are ambitious and partly contradictory. Maybe posting them here in cyberspace will help me fulfill them.

What are your writerly resolutions? Feel free to post a comment.