Author: Carolyn Ogburn

Writer, hiker, activist and gadfly. #Binder Writes @NumeroCinq555 / Blogs @pshares MFA @VCFA

UNC-Asheville marks the Disability Day of Mourning

The flyers were posted around campus, the words of Mother Jones emblazoned across a simple image of a flame: Mourn for the dead, and fight like hell for the living. UNC-Asheville’s March 1 vigil, part of the Disability Day of Mourning, carried grief and a fierce anger. Above all, it marked those who gathered as a community: a community of disabled people mourning the losses of those whose lives bore a deep connection to their own.

For nearly three hours, the names of the dead were read beneath the small white tent on the quad. Tiny candles flickered on the table that held a select few of their stories. Clouds darkened over overhead, as, one by one, the names continued, quiet and relentless as water. Names like: Alex Santiago, 21 years old; Desmond Hudson Jr., 6 months old; Carolyn Taurino, 57 years old; Jose “Pepe” Castillo-Cisneros, 3 years old. And hundreds more, of all ages, all backgrounds, all genders.

UNC-Asheville’s Disability Cultural Center, together with community members, parents, and people with disabilities, marked the Disability Day of Mourning on March 1, 2017 with a vigil that echoed similar gatherings across the world. People gathered with silence, with tears, with readings held in about 40 cities and communities throughout the United States, Canada, Australia, and online. This was UNC-Asheville’s first time participating in the vigil, and the response was strong. It came about through the vision of Christa Mullis, who was also instrumental in founding the campus’s Disability Cultural Center. “It was the first thing I emailed Dr. Chiang about when I got the (internship) at the Center,” Christa admitted. Chiang instantly saw the power of the vigil and the two set about to make it happen, with the help of an organizational packet from Autistic Self-Advocacy Network (ASAN).

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Nefertiti Karismaida, a brown-skinned woman with short hair reading at a podium beneath a white tent. A small group of people gathered around the tent, listening.

 

According to the ASAN, over 400 people with disabilities have been murdered by their parents, family or caregivers in the past five years. The rates of violence against people with disabilities are higher than those against non-disabled people. A lot higher.

In 2012, the Bureau of Justice Statistics reported that the age-adjusted rate of violent victimization for people with disabilities was nearly three times the rate among those without disabilities. In 2012, reviews done by the World Health Organization found that children with disabilities are 3.7 times more likely than non-disabled children to be victims of any sort of violence, 3.6 times more likely to be victims of physical violence, and 2.9 times more likely to be victims of sexual violence. Children with mental or intellectual impairments appear to be among the most vulnerable, with 4.6 times the risk of sexual violence than their non-disabled peers.

“I think one thing that people don’t realize is that people’s attitudes towards people with disabilities isn’t always fine and wonderful and loving and charity.” Mullis said. “The murder of (6-year old) London McCabe was right after I was diagnosed, and I really got involved in the community so…that one really affected me emotionally. I always think about him whenever I hear about another autistic kid being killed, or when this day comes up. I did not expect that I would have to read London McCabe’s name the other day so, yeah, when I did read it, I had to take a moment. A few times when I was reading there was a pause because I had to reset my voice, but that time there was a pause because I had to reset myself, emotionally, before reading his name. He reminds me of some autistic kids I know who aren’t being treated so well, who are really happy loving kids, and their parents aren’t treating them well. And I worry about them. Not that something so horrible will happen to them as happened to him, but other things that are still… horrible.”

The first Disability Day of Mourning vigil was held on March 30, 2012. George Hodgins, a 22-year old Autistic man, had been murdered by his mother earlier that month. Because Hodgins was disabled, media accounts of his death focused on the challenges his mother faced as the parent of an autistic child rather than upon Hodgins himself. As organizer Zoe Gross noted, “Because he was disabled, George had been written out of the story of his own murder.”

Today, the annual Disability Day of Mourning is hosted by a coalition of organizations, including ASAN, ADAPT, AAPD, Not Dead Yet, the National Council on Independent Living, the Disability Rights Education & Defense Fund, and other disability rights organizations. Mullis opened the UNC-Asheville’s vigil with a reading of Zoe Gross’s essay, “Killing Words” which asks professionals, journalists, and media to examine the way they cover violence against disabled people in their news articles. “We need to start looking at these murders as copycat crimes, which are encouraged when murders of disabled people receive positive press coverage,” Gross writes.

One question I asked each student was whether they’d been personally aware of the pervasiveness of violence against people with disabilities. In general, I found that most students with disabilities were not surprised by the statistics. Kit Sullivan (whose reading of “I am not a burden,” brought tears to the eyes of many in attendance) said, “I’ve seen a lot—not people getting physically injured, but just saying bad things, or just making jokes. It can be demeaning and people might not realize it.”

More than one of those gathered referred to Akton T-4, the Nazi party’s purge of the disabled community in Germany which resulted in medical experimentation, torture and deaths of its disabled citizens. “I was lucky,” said UNCA student Nefertiti Karismaida, who read Astra Milburg’s powerful “Letter to a Baby Thrown from a Bridge” at the vigil. “My parents never think that I am a burden, but there are millions of kids whose parents think the kid’s life must be a misery. ‘If I put my kid out of misery, I am doing it out of good intention.’ That is not kindness.”

“I feel sad, but I’m also angry,” said Ray Hemachandra, the parent of a 16-year old autistic son, who also pointed out the banner flying from the nearby Ramsey Library advertising an exhibit marking the persecution of homosexuality in Nazi Germany, 1933-45. “How do we change the culture?”

Karismaida would say, changing the culture requires action. “It’s like, this is who we are and we need to unite, we need to stand together because we are people, we are not property. We should not be taken lightly. If we remain afraid, if we do not conquer our fear, then we will always be afraid. Being brave does not mean you are reckless. Being brave means that you protect those who matter. And you matter. Because you matter, we are proud that you are here.”

To learn more about the Disability Day of Mourning, go to the Disability Memorial, and to the Autistic Self Advocacy Network’s Disability Day of Mourning page.

The Autistic Self-Advocacy Network created an Anti-Filicide Toolkit to actively work against the prevelence of violence against disabled people.

Review: Reading Girl, by Elizabeth Paul

Recently, I’ve become interested in the politics (and prose) of image descriptions, at least in part because of the accessibility issue of images. Because people who rely on screen readers to interpret text don’t have access to images, the provision of image descriptions is becoming increasingly common.

In Elizabeth Paul’s collection of prose poems, Reading Girl, each one based on an (unseen) painting by Henri Matisse, you see what poetry may be found here. Image descriptions are meant to “de-scribe”— that is, to write down, to give an account in words of something or someone, “including all the relevant characteristics, qualities, or events.” But these descriptions pulls upon the other definition of what it is to describe a thing, i.e., to mark out or draw. The pen described the circle. Paul’s descriptions don’t allow words to get in the way of the paintings.

There are 23 poems here, most four to five lines long; others linger over several paragraphs, but none is longer than a page. No information is given about the viewer of the paintings; no painting is given a frame. Instead, the reader is placed within the very sensual, three-dimensional context of each image. These are poems and paintings you can taste.

As an example, the title poem, “Girl Reading, 1905-06, Henri Matisse,” gives us the girl right away: “Her head never feels as heavy as in an afternoon of reading—” The reader, reading Paul’s chapbook, reads the refractive line again. Her head, my head, suddenly heavy as I read. The line continues, “there is a somnolence, an oppressive focus and abstention from the day.” I don’t know what the girl is reading, but it doesn’t matter: I know that feeling.

But I also know the feeling that follows, the one that carries the rest of the poem, in which every single thing in the room clamors for the reading girl’s attention.

Across and down the pages she tunnels while everything around her resents her inattention. The neglected pitcher trades bitter thoughts with the slighted table cloth adorned for delight. Apples and pears like preoccupied pigeons scavenge ever further from the moment of ripeness. Proud flower vases talk among themselves, making sure to be heard every now and again. The pictures on the wall hang out of reach, lucid only in denial that they had ever been hers. How is such distraction to be borne?

Each sentence here is exquisitely structured, chiseled to the quick of each of Matisse’s images. In Reading Girl, Elizabeth Paul has created image descriptions that engage both sense and sensibility, and offer no small measure of delight along the way.

Review: Harbors, by Donald Quist

I’d read a few of the essays found in Donald Quist’s new essay collection, Harbors, when they were published over the last year or so, but nothing prepared me for the impact of the complete collection. It’s a beautiful book, for one thing, something that deserves to be noted in a time when publishers save as much as they can wherever they can. The print, while small, is elegant; the paper is thick and of high quality. And the cover is just gorgeous. I read ebooks, but I want to hold this one in my hand. But it’s what’s inside this collection that really makes it remarkable.

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One of my favorites recalled the author’s relationship with his grandmother — who was, what we’d call in the South, a “real character”. She watches Jerry Springer and television preachers, her door was always open to drunks and addicts who would stumble by to share their stories (and she’d share her vodka). His granduncle who shares the house was a church-goer who enjoyed the respect of the community. But the essay shows how our lives are much more complex than any easy summary might make it seem.

In addition to tender and honest portraits of his family members, Quist writes about his time spent working for the mayor’s office of a small South Carolina town at a time of racial tension, and the ambiguity he feels in his role. He writes of growing up, working at the mall’s Spencer’s (which will ring a bell for anyone who came of age in the 80s) and how it was to be a geeky bookish adolescent (the detail of his favorite authors of that time—RL Stine and Camus—had me howling in recognition), are shared with a big-hearted sympathy to the boy he was.

Other pieces recount the feelings of isolation Quist experienced as a black male living in America. The way black bodies are attacked here, not newly since the time of social media but throughout his lifetime and beyond. Reading these essays gave me—someone who may be about his age, who was raised white and female about an hour’s drive from the South Carolina locations he describes—a very physical sense of the way the bodies we inhabit shape the lives we have in a very real and impersonal way. These feelings become more articulate once Quist and his wife decided to move to her home country of Thailand, where they live today. Like James Baldwin (or, it must be said, Ta-Nehisi Coates) living and writing in Paris, Quist’s view of these United States is sharp. At times angry, and at times revelatory, this is a brilliant collection.

Post-MFA Reading List

There are a handful of books I’ve been wanting to get around to for quite a while, and late summer seems like the right time to take them on. I don’t expect the dark tones of Thomas Bernhard to make everyone’s summer reading list, but to me his work is like the smoky taste of puer tea, perfect for humid afternoons and rainstorms. I’m starting with two – Wittgenstein’s Nephew, and The Lime Works.

Then there’s an early Rebecca Solnit, recently reissued by Haymarket Books – Hope in the Dark – which opens like a lawyer for the embattled and beleaguered cause of Hope, the weary defendant. I’m never sorry for reading Rebecca Solnit.

Or for reading Wendell Berry, whose collection of essays Imagination in Place has been waiting patiently for my attention. Wendell Berry and Rebecca Solnit will make for fine company of a warm summer evening.

In the wake of encountering Alison Bechdel at my last residency at VCFA, I’m finally reading her two graphic memoirs, Fun Home and Are You My Mother? I’m pairing these two with another memoir I’ve long intended to read, Lidia Yuknavitch’s The Chronology of Water.

I’ll be reading a couple of books for review as well, including War on Autism: On the Cultural Logic of Normative Violence by Anne McGuire. (Did I beg to review this one? Absolutely.)

I expect there’ll be more titles salted in the next couple of months – Donald Harrington’s Architecture of the Arkansas Ozarks? Richard Flanagan’s Narrow Road to the Deep North? – but this seems like as good as any a place to start.

 

 

 

Where I’m Writing From

This morning I wake in an ascetically narrow bed, in a room meant for work. Outside, the freeway roars beneath the singing of frogs, the songbird’s morning cacophony. There’s a faint smell of coffee drifting from downstairs, which means I’m not the first one up. In a new place, I’m trying to fit in.

I could go downstairs, but that means getting some kind of public face on, so instead I let myself lay in bed, folding the thin pillow around itself for support, wrapping myself in blankets. The room is papered in delicate blue patterns, and the bay window overlooks the prairie. Without moving from the bed, I can only see the sky, but there are miles and miles of sky hanging low with thick gray clouds. The tops of trees metallic with new growth, slivers of light.

My intention, while here for these 3 weeks, was to abandon the news. An intention, of course, broken within hours of arriving. Indiana, after all. The last major primary before California. How could I not want to know?

The house, Ragdale, was built by architect Howard Van Doran Shaw in 1897 for his family as their summer home, a place to escape the sweltering heat of downtown Chicago summer. His father helped him cover the purchase price, and the cost of building a home. His daughters attended school here for a few months in the spring and the fall, returning to their school in Chicago during the winter months. Shaw and two other men bought 53 acres of farmland at the edge of a raised trail that had been used by Indians, a glacial ridgeline that had once marked the shore of Lake Michigan.

The house still retains the flavor of a family home. There are 12 of us here, visual artists, writers, composers. We gather at night around one long table, eat family style food prepared by Linda. We talk about the work we’ve done that day, about our homes and jobs and families. We avoid talk of politics. After all, we’ve come here to get away from all that. To work in peace.

But we all know what happened today. Donald Trump has won the Indiana Republican Primary. Within hours, Ted Cruz will abandon his campaign. Within hours, the country will be formally divided into battle lines.

At dinner, I talked to a young Mennonite artist who works in intricately patterned designs. We talked about the way that denomination, like all Anabaptists, are organized from the bottom up. The people, the congregations, make the decisions regarding the business of the church. It’s a part of the service, something that struck me as something almost crass, though the process he described is invariably thoughtful. Business meetings of the church are like business meetings everywhere, I’d thought, and best avoided.

There is always a tension between money and art: two dogs circling each other, snarling.

The bedrooms retain the names by which they were known in the Shaw family. I’m in the Blue Room. Albert’s room is across the hall, and Alice’s Rooms (sic) to the right. At the top of the stairs, a small bedroom has been named “The Top of the Stairs”. Each room’s name is framed, the letters cross-stitched into a rough woven cloth, as a child would do.

These are the rooms of privilege, the quiet in which it’s possible to think a thought all the way to its end, but the quiet has a certain smothering effect as well. We are not loud here, the quiet enforced not by any formal rule, but by a received understanding. Though the artists who have been invited here are mostly white, mostly women – mostly, in fact, people who look like me – there are a few whose first language is not American English, and a few whose skin is brown. There are not, so far as I can tell, accommodations for disability. One studio is wheelchair accessible.

There is a movie I saw once, as a child, of a smart, rebellious young woman who joined in with a gang of thuggish feminists. Their meetings were loud and passionate, then quiet and sneaky. The woman was beautiful, and it was decided by the group that she should infiltrate that most American of traditions, the Miss America Beauty Pageant. When she won the pageant, as she would, she should remove her crown, throw it at the judges, spit upon their stale ideals of feminine beauty, and state the ideals of the new feminism instead.

I can’t remember the name of this movie to save my life, but this is what I know at the moment she received the crown, something changed. She looked around, seeing only the adoring faces of the crowd. Tears appeared in her eyes. She raised her hand, and touched the crown on her head. And then, instead of hurling the crown aside, she opened her palm into a wave. She became Miss America.

My social media feed will be full of outrage today. Again and again, I will see Cruz’s elbow hit the face of his wife as he reaches to embrace father, the evangelical pastor and Tea Party conservative icon, Raphael Cruz. Those of us who have looked on with embarrassment and disbelief as a racist, sexist demagogue who plays rough and loose with the truth has won the popular vote in state after state after state. “Isn’t it awful,” we murmur, quietly. In truth, we don’t know what to say. We click “share” or “like” as we scroll through like-minded posts.

I could look now, but instead I’m going to get up and brave the stairs. I’ll get dressed, run a comb through my hair, brush my teeth. The coffee will be hot, with the burnt flavor that comes from sitting too long.

 

 

 

 

 

 

Why MFA?

 

I’d quit my job, a job I’d once loved. I’d continued to participate within autistic community, through existing friendships with autistic adults, helping provide supports where I was asked. I’d started an Autism Book Club with another friend, a group of dedicated readers – autistic, or parents of autistic people, or professionals who wanted to read more about autism – all of us curious to learn more about autistic representation on the page. I was spending long hours on the phone with parents and family members of autistic children. I’d continued to serve on the Human Rights Committee at the Autism Society of NC.

I was still serving as the music director of the Episcopalian parish where I live, directing the choir, playing the piano, and selecting the hymns across the seasons of the liturgical year. I’d even been through a discernment process regarding priesthood; my dear discernment community felt, unanimously, that my calling was not clear. Apparently, clear calling is required for ministry, and I did not have one. But I still loved the work.

I’d started leading classes in Autism and Narrative, looking to the texts written by autistic authors like Dawn Prince-Hughes, Michael Scott Monje, and others to learn more about what the autistic experience is like. Having long lost faith in the medical model of disability, I wanted more intimate understanding of the human experience that’s been termed autistic; not as a deficient model of the human experience, but a life full of experiences that have long gone unnamed, unidentified, or misunderstood.

And I was writing. Every day. I’d abandoned one novel, found myself working on a new one. I wrote short stories, poetry. I wrote blog entries, essays intended to raise awareness about my fledgling autism consultation business, but the more I wrote, the less I cared about developing my business. The more I wanted to write.

 

I wasn’t new to writing, not really. I’d been writing and publishing poetry since I was in my 20s, had attended workshops at Fine Arts Work Center in P-town, at Oregon’s McKenzie River at the beloved women’s workshop, Flight of the Mind. I’d written book reviews for years, and I’d been awarded grants for writing, fellowships for residencies at the most civilized place I know, the Virginia Center for Creative Arts. As I wrote in the letters that I would eventually submit to MFA programs, “I’ve been writing for a long time; I’ve finally decided it’s time to learn how to do it.”

What I found when I surveyed the cluttered landscape of late capitalism is that I didn’t want to participate in any more violence. Not against people, not against environment, not against myself. I wanted to sustain the lives of the marginalized, bear witness to the fears of the privileged. I wanted to abstain from easy judgment, to walk without clear direction, open to the elements. Or, open-ish. Admittedly, violence is woven into the very fabric of our existence: we do not live, do not know how to live, perhaps cannot live, gentle, sustainable lives. But there were ways to minimize the violence, and I was in the privileged position of being able to try them.

To take writing seriously as a craft, a vocation, a profession is a public act; this going public was the first blow. Being forced to admit that I was going to try to do this, that I was going to Be A Writer (“The first rule of writing is never think of yourself as a writer. The second rule is to write.”) was uncomfortably public, demanding explanations that I was not prepared to give.

The second blow was that, upon finding myself at Vermont College’s low-residency MFA program, I wasn’t given directions to follow. Instead, I was given footprints.

 

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A snow-covered road that hasn’t been walked across yet, dense underbrush on either side.

 

Here in North Carolina, snow is a special occasion. Even here in the mountains, a snowfall of more than a few inches is an event. This past week found us digging out under about a foot of fresh fallen snow. The dogs and I soon left the house behind as we walked up the mountain, the snow rising as we climbed. Our two dogs, Theo and Puck, were exhilarated in the snow, dipping and diving, their noses snow-covered and tails wagging. They didn’t keep to the center of the road, but seemed to instinctively seek out the deepest drifts, retrieving the stiff grey bodies of voles who hadn’t made it through the cold. The dogs held them in their teeth as gleefully as popsicles.

I, on the other hand, found my breath coming quickly long before we’d made our way to the ridgeline. My legs ached from the push and pull of muscles that propelled me through the deep snow. I felt my knees twist, my ankles fixed in strange new directions to keep me from falling. The had been no one to plow the roads, no shovels to touch these trails. The only evidence of our presence was found in looking backward.

 

Why MFA?

We’d just about reached the top of the mountain when we found that someone else had been there ahead of us. Entering from another direction, someone’s footsteps broke through the snowdrifts and provided a trail for my own feet to follow.

The physical difference in walking a path that someone else has laid, and cutting through a path of one’s own is astonishing. Suddenly, I could see my own feet. I knew when I would need to brace against a jutting rock, or guard against a sudden dip in the road. I was no longer having to push with my legs, only allow them to guide me, to follow the feet of another walker.

The MFA allows me to follow the feet of other walkers, other writers. When there is a trail…why not take it?

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An orange-and-white dog traipsing happily along a country road on a path made in the snow.

 

I remember now the looks of dismay found on the faces of people who loved me when I exclaimed with enthusiasm the thing that impressed me most about the MFA program I’d entered: They don’t promise you anything!

There is nothing to promise in the work of writing. There is only walking, sometimes along a path well-trod by others (though even here, one pauses with frequent gasps, as if shocked to find the truth of what’s been already so well-documented); sometimes cutting a new way through unworked ground, uncertain of where, or if, feet will find their purchase. This walking goes more slowly, and you never know when you might come across the tracks of someone who’s been there before.

Writing offers opportunity for kindness, for deep compassion; it’s a way of slowing down attention, to witness one’s own life in all its complexities and unspeakable wildness. It’s a way of exploring the vagaries of another person’s life, of using imagination as a tool of empathy rather than entertainment. If prayer is said to be close attention with a heart of kindness, then, in that regard, the act of writing is as close to prayer as anything I’ve ever done, or am likely to do. Writing has become the way I spend my days, and the way I want to spend my life. Why not follow the footsteps of others who’ve done the same?

Why not follow the footsteps of others who’ve done the same?