Friday, December 28, 2018

Aug 1, 2017 by Noah Renee Shaw (A Poem)

Breakable like a piece of glass,
Don't drop - I'll shatter,
Don't even look harshly,
Or I may break,
When did this happen,
I who stood so tall,
Me against the world,
Now wanting to crawl in a hole,
My gumption is gone,
My strength wavering,
Is my desire in a lost and found,
Help me find me before I disappear for good.

Biography: Noah Renee is 29 years old and will be 30 on January 21. Noah Renee has been battling mental illness since her last year in college at the age of 22. She’s diagnosed with Schizoaffective disorder Bipolar type, PTSD, and anxiety disorder. She lives with her dad and twin brother.

She can be contacted at noah89shaw89[at]hotmail[dot]com.

Friday, December 21, 2018

Go Figure: A Meditation on Illness and Understanding by Dov Zeller

Latin figurare "to form, shape.”

The inscrutable shape of a story unfolds here.

Not a story, a catalogue of thoughts. A scrolling form.

The beautiful chaos of musings. Another misshapen day.

What will I do with these flocks? Seconds that make up minutes—sunlight glinting on their wings, where comes together so many feathery hours.

Hours like a pod of whales that swims in formation (fully aware that the toxic waters won’t hold them much longer). And what do they do? Do they nod a little goodbye to the world? Sink to the sand below and be done with it? No!

They love and mourn. Swim in community and flex their muscles. Fly up into the air and make art. They are activists, and they play, because they know these hours are all we have.

(Hours that make up days.)

Do days cut a poor figure? Are they to be held and trusted, or let go? Followed quietly? Flushed with everything else into the oceans of time that so long ago held and worried and groomed us until we walked or crawled or shimmied out, sunbathing on the banks.

I don’t know. I’m figuring (it figures)… I’m figuring something… I’m figuring (nothing) out.

All days have shape. Just different. Differently-shaped days. My days won’t fit. They won’t rest on the kitchen table or sit idly on the palm of my hand. The briefcase can’t close over them. Like water they spill over and through and soon, there comes another.

And there you have it, a week. Seven days, an odd, prime number. In a month there are four of them, and usually a few extra days thrown in for good measure. Like a pinch of salt. The flour left on the cutting board after the dough is rolled. (There is (dis)order in (dis)order.)

As for me? A bit crumpled lying here in my bed. The sheets in a tangle. Someone somewhere will say, “He cuts a poor figure.” Don’t worry. We’ll figure it out. We always do. (Time and I until time goes on without me.)

I’ve heard some say “I don’t have a musical bone in my body.” Others that they don’t “have a head for figures.”

But the truth is, music is simply part of the landscape. Within and without. Birds sing almost everywhere. Crickets salt the night. Wolves go on and howl. Fish swim and dart in great symphonies, bless their shoals. The sun rises and sets, the moon in its cyclical shadow. Tides go in and out. Our hearts beat at a rhythm and our blood hums along and so there is at least one music to be escaped at great peril. (Use the musical sign for rest.)

As for figures, those of us who see a line, a circle, one or two disconnected strokes, begin to find a body forming there. Our brains are trained to connect. To see faces—the Virgin Mary in a piece of toast. An electrical socket, two eyes and a nose (or is it a mouth?)

Pareidolia is the word for people who see faces to excess in inanimate matter. But it’s all a matter of degree. To see identifying characteristics everywhere. To form a face, a body, a story.

We nearly all have a head for figures to a point.

And then there are connections that go beyond the immediate. Yesterday x talked of a friend. “They’re brilliant,” x said. “They read a lot and watch a lot of films and make adventurous connections.”

(Adventurous connections!)

(When we seek connections that haven’t been made for us, that we haven’t been made for, then perhaps we are hang-gliding for understanding. Spelunking for truth.)

Some people are imprisoned by false connections, marinate in them until all they can do is force dots and lines together from two different universes to insist on a truth that isn’t there.

I am trying to have compassion. Trying to understand. The universe is bigger than a bread box, and yet, someone somewhere might hold a whole universe in their hand.

Definition. Figure. The “visible and tangible form of anything.”

Etymologically, the word comes from the formation of numbers. Lines building themselves into symbols. From there the word goes more broadly figurative. And then, more literally figurative? Lines forming a self. A body. (Here the line between literal and figurative begins to swerve.)

Realistic figures. Abstract figures. Classical figures. Figures in shadows. Figures in light. Hidden figures. (Is there space for realism when all is processed through the work of memory? Perhaps we live largely in fable, in rigorous dreams.)

To create a figure, you may first need a line. (I’m casting it. Hold on. I’ll reel you in. But what if the line is dotted?)

So often I’ve heard reverence declared for an artist’s curved or voluptuous, continuous or disconnected lines. When I try to form a line, it staggers, drunken, across the page. It jitters and shivers and refuses to listen to the idea that brought me to it.

I look at abstract art and even when I admire the lines, I don’t know how to speak of them.

“Which paintings have sharp lines, and which are soft, smooth or rough? Do the lines in the composition draw your eye to a specific part of the painting? Do some lines contribute to the feeling of action or stillness in the painting? Does […] always use the same style of linework, or does [their] style vary?” (“Five Ways to Think About A Line” click here to read.)

I look at my abstract life, and wonder, where is the specificity here? Where are the days? They’re all a mash. Vegetables boiled until the flavor’s gone out and you don’t even need a mill to turn them to soup.

And yet the next one comes folded and new. Fresh as cut grass. Sharp as a wound. Vivid and full of wonders because we live on a great marble that spins around a moving ball of fire. Interminable explosions freckle the sky as far as the eye can see. How can I not feel awe?

(When theories of light were young, philosophers thought the eyes reached out to grab at light, rather than being open and sensitive to the light that travels toward us.)

I’m so sensitive to light, I lie in the dark for most of my waking hours. I’m light averse, but most stars are far enough away that they don’t hurt. I’ve hurt people I love and all I can do is try to accept, to acknowledge, try to let go and do better as new days travel toward me.

Sometimes the past feels as far away as the unheated light of distant cosmic objects. Other days, time feels so airless, each day of my life a transparency set atop the next until light can’t get through and everything is inscrutable, but the pain of the past is as young as it ever was.

Still, I am trying to figure out what it means to be a figure in bed. A still life while still living. Not portraiture. Neither captured on canvas like fruit or a vase of flowers. No “Starry Night” (Van Gogh) or (Soutine) “Landscape in Ceret” (still lifes in motion). Just lying here unable to feel the constant motion, the Earth barrels along at nearly twenty miles per second and I sit here in the dark (what kind of figure am I?) listening to the rain.
Biography:  Before getting full-blown CFS/ME, Dov Zeller struggled to sit still and often read while walking (in between swimming, biking, and yoga). Now he is an intrepid recliner. Though sick with a devastating chronic illness, he is determined to appreciate the ecosystems he comes into contact with. As it turns out, even a small world is full of endless complexity. He enjoys reading, writing, visiting with friends, listening to audiobooks and classical guitar, and observing birds who drop by the window feeder. Zeller lives in Western Massachusetts, where he moved in order to complete an MFA in fiction at UMass Amherst. He has also lived in San Francisco and Oakland, California, and Brooklyn, NY, and he grew up in eastern Pennsylvania. He has two novels coming out this year.

Friday, December 14, 2018

Ezekiel Saw the Wheel by Rosemary Woodel

Ezekiel saw that wheel
Way up in the middle of the air
Ezekiel saw that wheel whirling
Way up in the middle of the air
Now the little wheel runs by faith
And the big wheel runs by the grace of God
And a wheel in a wheel whirling
Way up in the middle of the air
-Woody Guthrie

I’d been having trouble with visual acuity recently.  More trouble, is the truth of it.  It isn’t carelessness that causes me to take photographs that aren’t sharp.  “Tack sharp” as my photography teacher says.

July 19 and August 2 I saw Dr. I., the retinal ophthalmologist.  Normally I see him every three months.  I’d gone back again so soon because I had a new symptom I wanted him to check.   
I’d been in the hospital in late July for three days with a hemiplegic migraine.  Slightly before then and after, I noticed a wheel whirling in the middle of my field of vision in the left eye.   It was like a wheel spinning while the car is jacked up in the garage — it revolves but goes nowhere. 

 Dr. I. looked at his fancy photographs of the back of my eye and saw no change compared to previous photographs.  He therefore thought the wheel was the aura of an atypical migraine.  Not being a doctor, I didn’t disagree except in my head, because it was unlike any aura I’d ever had.  
 My migraine auras are active — bright and flashy and careening all over the dance floor of both eyes.  This shiny rotating disc was only in my left eye and remained straight in my field of vision.   As a photographer, it bothered me greatly that I couldn’t take a picture of it.

Meantime, my vision overall was causing problems in taking and processing sharp photographs.   (I was already used to not reading the printed page well.)  On August 20 Dr. D., my regular eye doctor, said both corneas were engaged in map-dot-fingerprint dystrophy.  It took me two weeks to memorize that.  Wrinkled corneas meant that seeing things in focus would be a challenge.  He said that down the road “they” could scrape them or iron them or somehow smooth them out but there was a long recovery time.  Meantime, I should put drops in my eye every hour.

But back to Ezekiel’s wheel.  Maybe I was better able to describe what I was seeing to Dr. D. than I had with the retinal guy because Dr. D. thought it was not an atypical migraine and suggested I see Dr. I. again, which I did in short order.  

For the first time since February 2017, my wet macular degeneration was active again.  This showed up in fancy photographs of my retina, not from my complaints about Ezekiel’s wheel.  
“So,” said Dr. I., “Your shiny wheel was a warning of things to come because this bleeding area was definitely not there earlier in the month.  It’s good Dr. D. urged you to return here.”  And so I had an injection in my eye.

Now the little wheel runs by faith
And the big wheel runs by the grace of God
And a wheel in a wheel whirling
Way up in the middle of the air

Soon after the injection, I saw black floaters that look like many flies in the dining room.  Wait, one of those four is a fly!  Now they’ve turned into crows.  I miss the little wheel, but all these creatures are entertaining.  

I will be changing the subject matter of what I photograph.  If I can no longer do macro photos of flowers, I can experiment with other subject matter.  A few days ago I took photos of shadows of sculptures at the UGA Museum of Art.  If they are a bit blurry, it doesn’t seem to matter so much.

Having had significant losses in my life, I make it a practice to encourage a Plan B.  Or a Dream B.  If I can’t do what I am accustomed to doing with my eyes and brain, what can I do with whatever still works?  A friend says this approach — resilience — is one of my strengths.  Oddly, I’ve noticed my photography is becoming more artistic as I experiment.  That is a very good thing.
Biography:  Rosemary Woodel is a photographer with diminishing vision and a writer with Traumatic Brain Injury (TBI).  At age 77, she is still adjusting to life in what she hopes are creative ways.

Friday, December 7, 2018

Viewing Frida Kahlo by Emily Rapp Black

CW:  Miscarriage

London (2018)

They come out in droves to see her in London: school groups in their crisp uniforms, sharing bags of sweet and salty snacks and looking bored; sunburned German tourists, one wearing a plastic mask of Donald Trump’s face; a woman in a black burka and black sneakers hurrying toward the museum steps. I’m nervous going in, although I know what to expect: Frida’s legs and casts; the corsets that held up the bones of her back; some of her best and most photographed articles of clothing that make up her quintessential “look.”

The Victoria and Albert Museum is in South Kensington, an area of London where apartments cost in the millions of pounds, and the white buildings are so spotless in the late September sunshine that I’m reminded of the white buildings in Mojacar, Spain, where my friend Emily and I strolled around on a hot summer day six years before when my son Ronan was still alive, my daughter Charlie was not yet born, and I hadn’t yet met my husband Kent. My friend spent the entire day talking me out of a manic state, my first and only (and I hope the last). Later, after hours of walking, we smoked cigarettes and drank white wine on the beach while she rubbed aloe on my sunburned back and I cried. I loop my arm with hers now.

“I had no idea Frida was so popular,” I say, and I’m legitimately surprised. “I’ll bet half of these people didn’t know she was an amputee.”

“You’ve dressed like her,” Em says. It’s warm in the first exhibit hall, and we jostle against the other onlookers, all trying to get close to each photograph or painting or fragment of a framed, handwritten letter for a few long seconds.

Indeed, I have deliberately dressed like Frida, or perhaps in homage to her. It would be ridiculous for an American woman to wear a Tehuana dress, but I have disguised myself in my way, one of several forms of controlled presentation: a denim vintage dress (always vintage, the fabric holding someone else’s story that will never be known to me) with a ruffle on the bottom hem and a nipped waist; tights; mid-calf 80s dead stock white go-go boots; gold jewelry draped and layered around the neck and across the chest, understated elsewhere; dark lipstick; a single braid.

“This is my confident get-up,” I respond.

“It’s working,” she says, and smiles. My mother, 75, and my daughter, four, walk ahead of us, my mom trying to shush Charlie as she cries loudly, “I want to sit down. This is so boring. I don’t like this room.” My mom picks her up and begins strolling around with her, whispering in her ear. She giggles. I wonder what my Mom is saying to her.

The rooms are heaving with people, and Emily and I quickly separate. I’m starting to feel hot and awkward, as I often do in art museums, when the pace of viewing is so slow and people are thinking so hard it’s as if they create their own kind of heat. It’s a miracle that more people don’t faint. Walking slowly is the hardest kind of movement for me, and without the momentum of follow through that happens at a quicker clip, I limp noticeably, which makes me feel unmoored from my body. And that makes me nervous. I notice people’s stares; people are staring. I feel their eyes on me as I limp, then on the photographs of Frida. A hushed concentration hangs in the room - a palpable sense of people looking at things to try and understand them, or memorize them, or take them in.

I’m feeling impatient to see the legs and the corsets and the boots. That’s more my genre. I move into the second hall, but it’s so packed that I’m forced over to the left side, where I stumble into the man in front of me, who catches me as we exchange awkward apologies. When he steps away to reveal a photograph of Frida I’ve never seen, I feel like someone has power punched me in the chest. I literally think of the heavy bag I used to have in the back room of my house in New Mexico, and all the hours I spent beating the shit out of it. I feel like the bag.

I look around for Em - I don't want to stand alone in front of this photograph on the edge of tears – but I don’t see her. Charlie is sitting on the lap of one of the guards while my embarrassed mother tries to pry my jet-lagged, stubborn little girl from his arms. “I'm resting,” Charlie announces, but finally relents and sits next to him on the floor. “I’m just Charlie,” she tells the guard, who is smiling, and my mom, giving up, sits down next to her on the floor. She gives me a little wave.

She’s in traction, I mouth to my mother, but she can’t lip read that far away.

What? I see her whisper back, her eyebrows raised.

“Traction,” I say loudly, and a few people turn to look at me. My mom shrugs and shakes her head, clearly still confused.

Indeed, Frida is in traction in the photo, which is taken from the side, so you can see that her head is suspended in air, held up and back by the pulley system behind her, the canvas taut against her forehead. Her amputated leg is raised up in a white cast and her hair is long and dark and flowing over the white cotton hospital gown. First, I am flooded with the memory of how it feels to be held like that, in suspense, literally, and how painful and awkward it is. The ache in the neck muscles. The blood from the amputated leg rushing down, that feeling that someone is trying to push knowledge into your head through the bone of your forehead with the bone of their hand. How slowly sweat moves through canvas burlap.

Frida is painting. There’s a sketchpad in her lap, and a brush in her hand. This is what makes me want to weep. She makes as pain unmakes her. And she has just lost her leg. I am overcome with compassion for her – not pity – and also compassion for myself, which is hard to come by. To my right, encased in glass, are the corsets that propped up the bones in her back after the accident, and for the rest of her life. My own early casts and back braces were made of the same rough cotton material that stained easily and that looked like something you’d buy at the rope and saddle store.  Frida’s amputation was in 1953; mine was in 1978.  I don’t remember the braces in the Casa Azul; I don't remember the straps hanging from their shells were the same straps I remember pissing on, tying on, shitting on, washing in the sink with bleach, carefully scrubbing out the coins of blood from my period.

I hear a conversation behind me:

It’s so sad, so tragic. 

Isn’t it just terrible, the pain she was in?  

Oh, these awful…devices. But it inspired her to paint. 

Yes, it made her an artist. All the pain.


I limp away, desperate to yell at these two middle-aged women who are having a lovely afternoon at the special exhibit at the V&A. I don’t. But they’re wrong.

Critics and fans, and just the average person who knows Frida from a tote bag or a refrigerator magnet, has inherited this narrative that pain was her muse. It’s what inspired her to paint, this narrative preaches, whether it was the wreckage of her love affair with Diego, or her chronic and constant pain, or losing part of a leg. Art has been codified as her ‘therapy.’” It’s so ridiculous I want to cry or scream, something. Instead, I keep walking.

Going half-made in Spain was not about being visited by a muse; it was a visitation by madness. Screaming out the window of a farmhouse, afraid to kill random bugs on the windowsill as the spirit of my dying boy might be trapped inside. Pretending to be Kafka, then pretending to be his lover, then pretending to sleep, then wanting to be dead. Wandering along dusty streets, my uneven footsteps lit by the bright moon breaking through, every so often, of the muted haze of a late summer Spanish sky.

Other art historians have broken Frida’s paintings into categories of those representing real pain and imagined pain. There is no way to calculate what represents more pain: the red leg with its winged painted foot in the glass, or Frida’s neck suspended in air. Which of her 30 medical procedures was the most difficult? Which of her four failed pregnancies hit her the hardest? Yes, she painted in bed. Create or die. That’s very different from “being inspired.”

Oh, those critics who make the architectural column of her spine a phallic symbol, who imagine the “penetrating thrust” of the pole through her pelvis and she must never have enjoyed sex. The pole got there first and she was ruined, crippled goods. They haven’t seen her legs, her winged feet, her corset decorated and shining. This wasn’t the art of inspired sentiment. It is the art of survival. But only if you see it that way. Otherwise, it all devolves into the typical narrative: the brave, pathetic woman who never had children, whose body was crippled, whose life was ruined.

Some critics and art historians have accused Frida of paying too much attention to her illnesses; some have debated the veracity of her pain, as if they were the architects of the scale. She was accused of allowing her illnesses to displace her maternal drive, and it was a fault, not a triumph, that she gave herself over to the masculine ambition of being a painter.

A diseased woman is a suspicious woman. A grieving mother is a suspicious mother unless she is a virgin and consecrated into the realm of religions impossibility.  It’s as if the idea – and especially the image – of a disabled woman in the world floats. It is there; no, it’s there; and there, or maybe there.

Another wall of portraits I hadn’t seen before: Frida naked from the waist up. Three black and white stills of her gazing at the camera while holding alternatively a mirror, a brush, an adornment for her hair. Her breasts are small and spherical and soft-looking. Her shoulders look sculpted and strong below the angle of her jawline. Wow, I hear someone say behind me, so close to me it’s as if they’re whispering in my ear. She’s actually beautiful. I never thought of her as beautiful. His wife pulls him along and the same pair of ladies stands next to me again. Such a pity she never had children. They would have been beautiful. And now I let tears blur my vision until people move past me and I hear Charlie saying, “Mommy! I’m so bored and I want to eat a cookie at the coffee store.” I pick her up and give her tired face a kiss. Behind us, encased in glass, the corset Frida cut a round hole inside as a way to show her miscarriages, to wear the losses against her, with her, around her, just as any mother would do.

Biography:  Emily Rapp Black is the author of Poster Child: A Memoir; The Still Point of the Turning World, which was a New York Times bestseller and a finalist for the PEN USA Award; Sanctuary, forthcoming from Random House in 2020; and Cartography for Cripples, forthcoming from the New York Review of Books in 2020. A former Fulbright scholar, Guggenheim Fellow, and James Michener Fellow in fiction and poetry at UT-Austin, she is the recipient of the Rona Jaffe Writers Award; the Winter Fellowship at the Fine Arts Work Center; the Wachtmeister Award in Nonfiction; and fellowships at Yaddo, Jentel, and Fundacion Valparaiso in Spain. Her work has appeared in Vogue; O, the Oprah Magazine; Redbook; the Sun; The New York Times; The Boston Globe; The Los Angeles Times, and in many other publications and anthologies, including The Best Creative Nonfiction. She is Associate Professor of Creative Writing at UC-Riverside, where she also teaches in the School of Medicine. She lives with her family in Southern California, and she and her husband, writer and editor Kent Black, own and operate a book editing and manuscript consulting business. Visit her at and

Friday, November 30, 2018

How I'm Still Here by Duane L. Herrmann

Content Warning:  Abuse and Suicidal Thoughts 
Image:  A black and white photo of a little boy wearing a dark shirt with light details.  He has a slight smile.  He is against a plain, white background like an old yearbook photo.
I am dyslexic with ADD and, now PTSD.  The latter I specify as “Domestic” PTSD.  It is not the result of a battlefield experience, except the battlefield was the home in which I grew up.  By the age of two my mother made it clear to me that my existence had ruined her life.  I wanted to end my existence then, but couldn’t figure out how to do that.  By age eleven, I had learned several ways.  I narrowed them down to the least painful and the most assured of success.

I thought it would be ideal to simply go to sleep and never wake up.  I had no way to obtain sleeping pills, so my next thought was gas.  Our house was heated by propane from a tank in the back yard.  The tank was much smaller than the house and our stove was in a very large, open space.  I could not imagine there was enough gas in that tank to fill the entire house.  So, I stayed alive.

I was convinced, by her constant screaming and hyper criticism over minor things (such as the way I shut my lips, swallowed, walked, and even slept), and others such as being forbidden to talk, think independently, or be angry, and all the work I did was wrong, that my mother wanted to erase me.  I mentally and emotionally fought to stay alive.

In school, I could not learn to read.  The letters were confusing and I couldn’t tell the difference between words like:  "on" and "no", "was" and "saw".  The summer after second grade, I walked a mile to the end of our road where a retired school teacher lived.  She taught me phonics.  I thought she was crazy as she held up flash cards with squiggles on them and made outlandish noises with her mouth.  Even more outrageous, she wanted me to make those same sounds to match the squiggles.  I eventually succeeded.  Two years later, in the fifth grade, I read fifty books.  I’ve not stopped.

I’ve wanted to write stories for as long as I can remember.  There was no one for me to play with except my mother, and many times she preferred to read the newspaper.  I wanted to be as important to her as the newspaper.  I began to make stories when I was three or four, but I couldn’t write any down until after I learned to read.  Of course, also during all this time, I was working.

My mother put me to work when I was two and a half and she didn’t want to bother feeding my baby sister.  She gave me that job.  Soon I ran away from home for the first time – nearly half a mile across the pasture that separated our house from Granma’s.  I continued that until well after I’d left home for college.

When my sister could eat solid food, my mother insisted that I help her dress herself.  That remained one of my jobs until I left home for college.  In between, I was given responsibility for all other household jobs.  As more babies were born, I had to care for them, too:  feeding them, changing diapers, etc.  By the summer I was 13, I was left at home with the responsibility to take care of the house, garden and farmyard animals, my two little brothers, and meals for our father, while our mother went out of town for summer school.  It was the happiest, most peaceful summer of my life.  When she came home, Dad put me on a tractor to help him farm.  We farmed several hundred acres of our own plus a few other farms until he was killed several years later.

All this time, school was a sanctuary.  No one screamed at me there, and teachers were grateful that I sat quietly in my seat.  I was nearly the youngest in the class, I didn’t act childish, I couldn’t talk to the other kids (I had been forbidden to talk when I was four), I was simply content to sit.  I struggled to do the work.  Teachers over and over said, I wasn’t trying hard enough.  They had no idea how hard I tried.  No one knew what dyslexia was, nor ADD.  No one knew what a Hell my home life was (more than once I was forced to swallow my vomit and I received a concussion for not washing dishes fast enough).  No one had any idea how many distractions there were in the classroom to claim my attention.  School was a daily, hourly academic and social struggle.  I passed the eighth grade only “provisionally.”

In high school I had two episodes where I lost connection to the physical world.  Walls in my high school moved and changed colors.  I could barely manage to go from class to class.  It took all of my effort to get dressed in the mornings, especially difficult was tying my shoelaces.  One day after I got off the school bus, I collapsed in the circle of pine trees in our front yard.  They whispered me to sleep.  When I woke up, buildings were solid and stable once again.  The next time I began to feel disconnected, I deliberately took a nap in the center of those trees and came back.

That summer, my father was killed and my mother emotionally collapsed inward like a black hole.  The pressure was off me.  The farm equipment was sold and I managed to negotiate my senior year, then left home as decently soon as I could.

I didn’t know I was dyslexic until decades later when my aunt discovered she was, then recognized the signs in my son and myself.  He and I both also have ADD.  I didn’t know about the PTSD until the son of a friend was diagnosed with an anxiety disorder.  I was shocked.  Didn’t everyone feel this way?  Apparently not.  Doesn’t everyone’s childhood crowd into their daily life so much so that you are still there and the screaming is still going on?  I guess not.  I thought everyone had to close their eyes while reading to let the letters sort themselves into words.  Nope.

In spite of all this, my urge to write, and my determination to write, have been so strong that I have continued my efforts.  I still can’t spell some certain words, but I have several word books (with certain words underlined) which I keep within reach at all times.  I have continued to try.  I have more failures than successes, but the successes add up.  I now have so much published that I am amazed.  I have a list.  It began with six small publications.  That list is now nearly twenty pages long!!!  Without the list I could not remember what I’ve done.  When I look through it, I am amazed each time!

I haven’t counted the number of items I have published, I did for a while.  Now I only count books, languages and countries.  It amazes me every time.

My  mother died a year ago.  In her last week, as her body rapidly failed, she twice reached her hand out to touch and hold my hand.  That was more affection than she’d ever shown to me.  It was the first time I knew that she cared for me.  When she was bedfast and unable to function, I was able to step aside from my pain and see the life she suffered.  It was generational, starting with the too-early death of her great grandmother.  Loss and pain kept falling on each next generation.  I was simply born into her pain.  Understanding that has helped ease my pain and I am learning new things about myself.

Don’t give up!!!  Don’t let other people stop you!  Keep at it.  You can do it!!!
Biography:  Duane L. Herrmann, internationally published, award-winning poet and historian, has held a variety of teaching and other positions, now  retired. His history and poetry have won awards and are translated into several languages.  His sci-fi novel:  Escape from Earth, has just been published.  His full-length collections of poetry are:  Prairies of Possibilities, Ichnographical:173, and Praise the King of Glory.  His poetry has received the Robert Hayden Poetry Fellowship, inclusion in American Poets of the 1990s, the Map of Kansas Literature (website), Kansas Poets Trail and  others.  His history, By Thy Strengthening Grace, received the Ferguson  Kansas History Book Award in 2007. Collections of short stories and historical articles, and dual language collection of poems, are forthcoming. These accomplishments defy his traumatic childhood embellished by dyslexia, ADD and, now, PTSD.

Friday, November 23, 2018

#HomeboundPhotography Interview with Dov Zeller

How did you become interested in photography?

My mother was a photographer. Not professionally. She was, for a while, a professional visual artist, though. She went to Pratt in the ‘60s and she did etchings, water color, sculpture, all kinds of stuff. And her photographs are wonderful. (I’m pretty sure she developed her own photos, too.)

I don’t know when I was first interested in becoming a photographer, but ever since I can remember I admired other people’s photography. I had a friend in college who was a photographer and developed his own images and I was in awe of the artistry, science, and craft-personship involved. But I found the technical sides of photography, dealing with aperture and shutter speed, etc., daunting. Even changing out film (of analog cameras) was overwhelming to me. So I shied away from taking photos for the most part.

As time went on I continued to be interested in photography and in my thirties I began researching and considering the various ways different photographers described the “elements” of photography. (Lines, shapes, patterns, texture, depth of field, perspective, etc.) I was drawn to a wide array of photos but was particularly fascinated by photographs that made artistic use of depth of field. I didn’t fully understand what depth of field was other than some blurry bits and some in focus bits. I just wanted to take photos in which depth of field was a thing. It took me years to really get a deeper understanding of depth of field and the relationship between aperture size and perspective and depth of field.

How is taking photos as a spoonie different from taking photos before you became one?

I was deeply interested in photography before I became a spoonie, but never felt comfortable investing money in a camera. In my mid-thirties I bought a little point and shoot (before that I only used disposable cameras. Ugh.) and I really enjoyed taking photos with it. I took photos of my pup. Of the ocean, I took close-ups of flowers in an attempt to summon the depth of field I was longing to incorporate into photos. Around this time I also got really into plant identification, and that led to an interest in botanical photography. The more I got into that, the more I wanted a camera that would afford more nuanced compositions—more detail, more control.

Funny to think of how, at that time, I had no idea what caused parts of images to be in focus or out of focus. Now I understand it a bit better. When the aperture is smaller the light that hits the sensor is more focused. With less light bouncing around, more of the image is in focus. As the aperture gets bigger and there is more light bouncing around, you have a broader “circle of confusion,” i.e. more stuff out of focus. But it's not all about aperture. Perspective and distances from and between objects also play a big part.

I’m really into science and love learning about this stuff and it's thanks to my friend and mentor Jae, a wonderful human and photographer, that I started to learn more about the science and technology involved in photography (Jae is a scientist, visual artist, dancer, political thinker and activist.) I love hearing them talk about light--movement, reflection, refraction, etc.

But, I was talking about how my photography has changed since I’ve been sick. Well, for one thing, after being sick and homebound for two years, I took the plunge and bought an exchangeable lens DSLR camera. I’m so glad I finally invested in a camera. Learning about photography and taking photos has brought me so much joy. It has enriched my life in ways I can’t even begin to communicate, though I will try. Not only do I get to enjoy learning new skills, but photography has given me a way to explore my limited surroundings and appreciate to the fullest the little ecosystem in which I am living. I love learning. I love finding value and beauty in my confined space.

Over the last few years, I’ve gotten really into macro photography, which gives me more “subject matter” to attend to. Just this morning I was outside taking photos of tiny green flies that were hanging out on the hosta leaves. I am astonished at their beauty and the fantastic technology of their physiology. The colors, iridescence, aerodynamics, and armor. Just, wow. Before I got sick, I had no way to know that I would some day be gushing over the wonder of flies.

I still come up against a lot of challenges. With lighting and finding ways to take a shot that captures the beauty or strangeness or essence of a moment. Or finding a new angle on something I’ve photographed a hundred times. But I appreciate these challenges. It is part of what allows me to keep growing as a photographer despite my limited mobility.

Also, as a homebound person, because subject matter is so limited, I am fascinated by lenses and love to use different lenses to see the world, or at least a particular image, differently. I'm also intrigued by bokeh. Good bokeh is sooooo good. (Bokeh is "visual quality of out of focus areas.")

Has photography helped you connect with the “outside world”?

Yes! In many ways photography has been an instrument of connection with others. Well, for one thing, researching and looking at photographs has been a form of travel for me. And I’ve connected with other photographers who want to talk shop, or just share work. I’m on Twitter and I post photos quite a bit and I love to check out the work of other photographers. And this is the point at which I should mention, I created a hashtag for anyone else who is homebound and who is interested in using it!!! #homeboundphotography. Other hashtags for spoonies/disabled folx to consider using, #spooniephotography #spoonieart #disabledphotographer. And if you create your own photography-related hashtag feel free to @ me on Twitter at @DovZeller

What's a challenge you've had as a spoonie photographer?

Finding subject matter I think has been my biggest challenge. And also learning how to navigate lighting.

What's your favorite thing about taking photos as a spoonie?

Learning. Seeing things more closely and from different angles. Growing to have more appreciation for my surroundings and for spaces I come in contact with. I look at the world differently. I like looking for things of beauty/complexity in the most seemingly mundane places.

I’ve noticed that your photography has a wonderfully observational, contemplative quality about it, as if the richness of elapsed time were somehow etched into the still images. I’m wondering if, and how, becoming and being a spoonie might alter your artistic eye, or perhaps deepen it in some way? 

Definitely being a spoonie has made me something of a time-lapse photographer. A kind of documentarian of the mundane, minute and seemingly uninteresting. For example, early this summer I documented the peonies from bulb to bloom to full-flower to dying flowers to really dead flowers (still taking some images of those.) And I catalogue the wildflowers in the little front yard as they come and go. This morning I found night-flowering campion on the lawn. I’ve not seen campion on this lawn before and I haven’t seen it since I used to walk along the bike path (which I haven’t done in over four years now because of illness.) It was wonderful to see this old friend and I took photos of it at dawn before it closed for the day and then as it was closing and then after it closed. I love that this plant opens at night and closes in the morning.

Has your photographic process changed since becoming a spoonie, either mechanically, spiritually, or emotionally? 

Absolutely. All of the above. And I love that you bring up the spiritual aspect of photography. Judaism is a religion in which a lot of rituals revolve around time. My connection to my Jewish spirituality, before I got disabling ME, had to do with singing, observing Shabbat (in my way), separating “sacred” from “mundane” time. Observing holidays. These are all things I can no longer do and my connection to Judaism has changed a lot and in many ways diminished. But spirituality, for me, is also more broadly about contemplation, celebration, acknowledgment, and gratitude. And photography helps me engage in these things. Keeps me connected to the “natural world” though I am so often indoors. Allows me to contemplate and appreciate light, darkness, interesting shapes/patterns, all the flora and fauna that surround me. So between that, and acquiring better photography equipment, and my subsequent growing relationship with macro photography, and the ways I rely on photography to help keep me: intimate with greenery, grounded, feeling “productive”…I would say that counts as a mechanically, spiritually, and emotionally changed.

What do you notice and prioritize in your photos that a non-spoonie might not, and why? 

I notice all the little insects and wildflowers in the tiny front yard. I take pictures of the neighborhood cat Pixie who visits me a lot when I take photos outside. I document sunrises, and sunsets occasionally (though I am usually too tired by the afternoon to take photos.) I take portraits of friends when I can. I wonder sometimes, if I was not so mobility-limited, would I do more landscape and street photography? The truth is, I can only go out for “fun” (non-appointment-related) excursions once every couple of months usually and I almost always choose to go places where I can take photographs of plant life. (Botanical gardens, for example.) That said, on one of these excursions my friend took me for a little drive and I got to take a few “landscape” type photos of a red barn and it was pretty exhilarating.

Why are you drawn to dawn and pre-dawn shoots? What is the appeal of early morning for you as a photographer? 

Well, I wake up about 3AM on a good day. (On the worst days, I go to sleep at ten or eleven and wake up at 1AM and can’t fall back to sleep. But, there are a lot of better days when I go to bed at 7 or 8 and sleep in until 3.) And though I don’t enjoy waking up so early, it’s wonderful to get to see the sun rise. And to notice the vast variations in sky-scape. Though I still don’t fully understand why the colors and cloud formations happen as they do, I appreciate the beauty, and just keeping track, in my small ways, of the patterns and revolutions and angles of light. I tend to be disappointed by a cloudless morning sky these days, because it usually means a boring sunrise.

For more on Dov's photography (and spoonie photography in general) please click here and here
Biography:  Before getting full-blown CFS/ME, Dov Zeller struggled to sit still and often read while walking (in between swimming, biking, and yoga). Now he is an intrepid recliner. Though sick with a devastating chronic illness, he is determined to appreciate the ecosystems he comes into contact with. As it turns out, even a small world is full of endless complexity. He enjoys reading, writing, visiting with friends, listening to audiobooks and classical guitar, and observing birds who drop by the window feeder. Zeller lives in Western Massachusetts, where he moved in order to complete an MFA in fiction at UMass Amherst. He has also lived in San Francisco and Oakland, California, and Brooklyn, NY, and he grew up in eastern Pennsylvania. He has two novels coming out this year.

Friday, November 16, 2018

DESCENT Livestream, #TheHomebodiescollective, Etc.

Tonight, there will be a livestream of a multimedia dance duet titled DESCENT. It stars disabled dancers Alice Sheppard and Laurel Lawson.  The show begins at 7:30 EST.  You only need to create a livestream account if you wish to comment.  Click here to find out more.

 #TheHomebodiesCollective is a new hashtag for people who are at least somewhat housebound or bedbound to connect and share.  There is a conversation for artists and writers (click here) where people can talk shop, find someone to collaborate with, and more.

The next #CripLit Twitter Chat will occur on Sunday at 7:00 PM (EST).  The topic will be Mental Health and Writing.  More information can be found by clicking here.
A couple notes:

After today's post, guest posts will run automatically on each Friday until everything I have scheduled appears.  There might be a few weeks in December or January where nothing updates.  Or a guest editor may temporarily come on.  It depends.

Also, this blog is slowly starting to expand to include more forms of art on a regular basis (beyond literature).  This space will always be for writers.  But, opening it to other arts is something I see as a natural progression.  I welcome your feedback as always.

Friday, November 9, 2018

Representation in Jacqueline Carey's Starless (Spoilers)

Khai is a blooded, young warrior assigned at birth to be the soul-twin and protector (The Shadow) to princess Zariya.  There has never been a princess assigned a Shadow.  And these two are keys in a prophecy to save the world from a dark and terrible god.

The premise is fairly simple and quite familiar, but the execution isn't just highly enjoyable, it is more than the description promises.

Not the least of which is because of Zariya.  A fierce sixteen-year-old princess, Zariya is the king's favorite child, and is a cripple.  She faces gods, travels seas, and stares down death.  She does it on horseback, in slings, and through the use of her dual canes.  She has a couple moments of self-pity because there are promises of a cure that never materializes, but she navigates the world with a sharp mind and an elemental gift.  And she is physically desired (although nothing explicit or "devotee-like").

I held my breath every time the book spoke of a "cure".  I was positive this would be a book that forced it onto our heroine.  Too many books make the snide claim that crips can't save the world.  Well, not this one!  Sure, Zariya is just one part in the prophecy, but she plays a big one and does it well.

Khai is a Shadow unlike any before.  Born in a girl's body, Khai is made an honorary boy for the purposes of training, though Khai isn't told about their birth sex until nearing puberty.  Ultimately, Khai realizes they are both male and female.  They are one of the best fighters in the world and are loyal.

While I didn't always enjoy the way the world around Khai tried to force them into a female role, I'm sure it rings true to certain people.  The story is told through Khai's perspective.

The world is also populated with humans and mythical beings in a myriad of colors.  Zariya and Khai both have brown skin.

Of course, representation means nothing if it isn't done well.  It becomes intensely diminished if the story isn't entertaining.  Good thing I found Starless a compelling and worthwhile read.

Thursday, November 1, 2018

Our Next Possible Project and Other Considerations

As I ready myself for surgery, I think a lot about this space.  Will I have enough content to keep it going?  Does it even matter if I put this space on hold for three months?  What's next?

I need submissions to keep the blog going in my absence.  Please submit.  Interview a fellow writing cripple.  Send your art and describe your process.  Write a book review.  Tell us what ableist trends you see in publishing.  Wax poetic about your favorite neurodivergent journalists.  The cut-off date for submissions will have to be November 15th.

I often toy with opening the blog to flash fiction and poetry.  I'm hesitant because I don't want this to become a literary magazine, though I think an occasional piece would be a lovely change.  What does everyone think?
2019 will mark the launch of our Youtube channel, some type of online writers' retreat, or classes on demand (feedback and thoughts are needed).  There will be no cost (ever) to utilize or participate in anything connected to H.U.P.  Because I live on SSI, I know how difficult it is to afford events and education to further one's craft.  Because I live on SSI, I can't afford elaborate websites or to pay instructors and contributors what they're worth.  I also can't apply for grants or do crowdfunding.

I spend a decent chunk of time trying to find ways around the "money issue" for everything I want to give this community.  I rely on volunteers and those who don't mind giving their labor away for a three-dollar pittance.  All I can say to everyone who helps with this space is:  Thank you.  Thank you for every word you've written for me, for each ounce of energy you've spent towards the vision I have for us all.
Around a month after I come back, we will be taking mentor applications for our program!  If you are (or know) a disabled/neurodivergent writer who would fit as a mentor, keep early February in mind.  There will be at least one mentor needed for promising teens.

Friday, October 26, 2018

7 Tips for Writers Facing a Hospital or Rehab Stay

 If you have advanced notice:

1.  Decide what's important.  Can your blog be put on hold?  Are there certain deadlines you can't miss?

2.  Do what you need to before going.  Don't just assume you'll feel well enough to complete brain-intensive work.

3.  Back up your files.  You know, just in case.

4.  Prepare your "away" messages for cellphone and email. You can also schedule social media posts ahead of time.

5.  Pack your preferred writing method.  No one wants to have a great idea with nowhere to put it.

6.  Bring a book and (perhaps) a device with Internet access.  Maybe for work, maybe for pleasure.  Always keep your options open, but don't overdo anything.

7.  Remember, your well-being is paramount.  Writing can be put on hold as long as it takes to get back to your normal.  If you suffer, so can your work.

Friday, October 19, 2018

Interview with Editor Sarah Packwood (Submit to Her Project!)

Sarah sits with trees behind her. She is wearing a yellow blazer and a white blouse. She has short dark hair, round black glasses, and is smiling at the camera. She has jewelry in her bottom lip and ears.

If you want to submit to the project, please click here.
If you want to see the original call on Twitter, please click here.
How did you come up with the idea for your disability anthology?

Rebel Mountain Press, a publisher local to me, did a presentation on their previous anthologies in my publishing class one day. Their catalogue includes LGBTQ+ and Indigenous voices anthologies, and I was wishing for there to be a similar anthology for the Disabled community. I sat through the whole class daydreaming about what a disabled voices anthology would look like and who would be involved in making it, and considering the importance of having safe spaces for the Disabled community to be open, honest and raw with our experiences. I was considering all the amazingly talented disabled writers and artists out there, and thinking about how there isn’t enough representation of disability in any forms of media. Finally, by the end of class I realized I should just pitch it to them! So I walked right up to Lori Shwydky (a Rebel Mountain Press founder), introduced myself and said I wanted to help them make a disabled voices anthology. She showed immediate interest and plans to move forward were set in motion shortly after.

Why choose Rebel Mountain Press as a publisher?

Of course every writer dreams of being published by big houses like Penguin Random House and HarperCollins, but there is more freedom in working with non-corporate or local publishers. Some of the topics and narratives we’re going to see in Disabled Voices do not fit the mainstream idea of what the Disabled community is, so I don’t think most larger houses would care for that enough off the start to even accept my pitch. The concept of “nothing about us without us” so often cited in Disability culture is important to me in the creation of this anthology, and I am grateful for and respect Rebel Mountain Press for being willing to go there with us.

What makes a submission really "pop" to you?

I’m a bit of an enthusiast of any ideas or works that challenge mainstream thought. Anything that dismantles or deconstructs ableism is so wonderful to read because I think it’s empowering to witness other disabled people take a sledgehammer to ableism, and work like that often makes me think “yeah, I felt that way about this thing that happened too and now you’ve helped me understand why I felt that way.” It’s enlightening to read that kind of work, really.

Are there any elements of a submission that would make it a definite "no"?

Inspiration porn. This anthology is for the Disabled community, not for abled people. If abled people can learn something from this anthology or if the anthology helps break stigmas and intolerances, then that’s wonderful and I’ve accomplished one of my goals with this. But if work perpetuates ableist narratives like inspiration porn does, it will be unlikely that I will accept that work for publication.

Who are some of your favorite disabled/neurodivergent writers?

I love reading Kim Sauder and Imani Barbarin’s blogs. Alice Wong and Ace Ratcliff are both so fantastically educated and nuanced in their writing. I mean, I could go on… Artists I’m loving right now include Ruby Allegra, Michaela Oteri, and Karolyn Gehrig. My Instagram feed is constantly full of beautiful artwork by them!

What (do you feel) will make this disability anthology different than the ones already available?

I don’t know of any contemporary disability anthologies that include such a broad scope of works. We’re accepting writing in nearly all forms and all traditional forms of art for submission, and I am hopeful that the completed anthology will be broad not only in forms and genres but also in topics.

Can you explain the selection process pieces will go through?  (Are decisions made by multiple editors?  How many times does a submission get read?)

After the October 31st deadline, Lori and I will read all the submitted writing and select the pieces that stand out the most to be published. After that, I will do the first round of substantive editing on all the pieces and work with the authors to improve upon or polish their work where needed. Then Lori will do another round of lighter editing where she will give final approval for the pieces to be published and they’ll go on to be copyedited from there. With artwork, I believe the process is simply Lori and I deciding which pieces to accept but there may be some back-and-forth with the artist to make sure file formatting is satisfactory.

How has ableism impacted your life in (and out of) publishing?

In publishing, I’ve definitely experience the fear of submitting my work anywhere. I fear that publishers will do nothing more than strip my work down to be palatable enough for abled audiences. I think that’s where creating a safe space for other disabled writers with the Disabled Voices Anthology is so important to me. Outside of publishing, ableism touches every aspect of my life. In a broad sense, my relationships with other people and with myself, medical care I receive, educational experiences, career-building and future planning, and more all seem to be tainted at least a little bit by ableism. In my day-to-day life, the ableism I experience can range from hearing stigmatizing or derogatory language to getting stalked and harassed by strangers for parking in an accessible stall while not presenting disabled.

Do you plan on starting more "disability-centric" projects in the future?

Yes! Aside from personal projects, I don’t have anything in the works yet. I hope to make disability rights advocacy and activism my life’s work. There is not much else that gives my life meaning besides using the tools and skills I have to create a more tolerant and inclusive future. I am not going to have children of my own, but I want to be able to look back on my life and know that the projects I took on, like the Disabled Voices Anthology, made a difference to make future disabled kids’ lives easier.

Sarah is the editorial intern for Rebel Mountain Press’ forthcoming Disabled Voices Anthology. She is a 3rd year Creative Writing major and Sociology minor at Vancouver Island University in British Columbia, Canada. As Co-Chair for her student union’s Disability Club and local advocate for Disability rights and awareness, she considers herself an emerging Disability activist.

Friday, October 12, 2018

Clichés of Disability in Poetry

Blind, she made my heart stumble, starless.
Losing her, an amputation of my soul rendering me mute. 
She might be the crutch I'm crazy for.
Knocking me out like a bipolar boxer.  
A paralyzed being, helpless.

Abled poets will say there are many things wrong with the hackneyed (almost nonsensical) lines above.  However, few will point out the disability imagery as a flaw unless it's to mention the overabundance.  Disability and neurodivergence in poetry isn't just fair game, it's often celebrated.  Ten minutes of an Internet search yields dozens of examples of abled poets using our conditions. 

As abled writers mainly composing for other ableds, each word or phrase goes to ableist, societal default.  Does someone trip when they see the person they desire?  Lust blinds them because blind people can't navigate and often falter!  Do you feel like you can't go on without someone?  They're your crutch!  They make you insane.

Because our disabilities, divergences, and conditions are frequently made into metaphor, they become cliché by themselves.  How long do people use something before it's old and trite?  How many times did we have a part of us repeated back to us until it emerged as boring and lifeless?  

And yet, people still do it.  They are still celebrated for penning metaphors with a sprinkle of disability imagery that only means the default because society doesn't know anything else. They don't want to reach for new comparisons and language.  They're comfortable with their hands around our belongings, and they sure as hell don't want to listen when we give them new words to their worn-out phrases.

I'm not saying I don't believe ableds should be barred from using disability and neurodivergence in their poetry, but merely that they should be mindful of what they're actually saying when they allude to something.  They should know who they might impact and why.  They should listen to us.  And, if they can't do those simple things, they should leave our terminology, conditions, and identities alone.

We are not their metaphors.

In the interest of total transparency, I've used imagery in my poetry that doesn't belong to me.  I try not to.

Friday, October 5, 2018

Inspiration (Without the "Porn")

While reading the essay, "My Disability Story Isn’t For Your Catharsis" I was brought to a question I sometimes ask myself:  How can I be inspiring to other cripples (or helpful in a significant way to humanity in general) without tripping the inspo-porn wire?  I don't have a definitive answer.  Maybe there isn't one.

We can attempt to mitigate it, though.  When we write, we can subvert genre expectations like Katie Rose Guest Pryal suggests.  We can amplify each other's accomplishments so they flood out beyond the echo chamber and become commonplace.  We can rally for more authentic representation in media and defend against inaccurate information.  We can protest.  We can create.

But, it will take more than us, I think.  We didn't start the trend.  We aren't even tending to it.  Ableds just take what they want from us after a while.  If they saw our complete humanity, it wouldn't shock them that we sing, dance, climb, paint, own businesses, become lawyers, or have families.  If they saw our complete humanity, they would argue for an accessible society.

There is one good thing about inspo-porn.  Ableds may spread it for "the feelz", but it sometimes ends up on one of our feeds—not as a way for someone to shove another gimp's accomplishment in our face, but as happenstance arriving just when we need it.  Feel like your dream won't come true?  Well, your colleague shared the story of a paralyzed mountaineer an hour ago!  Ableds, in their attempt to motivate each other, can carry a previously-unknown story about us to us.  They can be unintentional pollinators of hope (as long as we ignore some of the framing).

We can't let how the ableds try to define us stop the progress we make.  We can push back against their ignorance.  We can forge new words and our own definitions.  After all, we're writers.

Friday, September 21, 2018

Submission Fees, Disability, and Poverty

According to the 2016 Disability Statistics Annual Report (in the US):

  • 39.5% of disabled adults ages 18-65 are employed, while 76.6% of able-bodied, neurotypical people are employed.
  • Disabled people earn about a third less than their peers when they do work.
  • The percentage of able-bodied, neurotypical people living in poverty is 13.1% compared to 20.9% for us.  
I'm going to be bold and say the percentage of disabled people living in poverty is higher.  Why?  Because the report claims disabled people are only 12.8% of the population, and the CDC disagrees (click for link).  I realize the studies are two (maybe three) years apart, but the gap in time wouldn't account for such a drastic increase. 

We equal about half of the people living in poverty in the United States and the United Kingdom.
Entry fees are no longer an indication of a literary contest scam, and the average fee is $20.  Yes, fee-free contests still exist, but nearly all "prestigious" ones are pay-to-play.  At least most contests charging fees give entrants a copy of the winning book or a magazine subscription.

Literary magazines charging submission fees are also more common.  While no hard numbers exist, I'd guess around 25% of "top-tier" literary magazines now have a mandatory $3 toll (sometimes more, rarely less) writers must pay in order to traverse the road to publication. Writers receive nothing except a decision for their cash.  The vast majority of writers receive more rejections than acceptances.
Right now, I have twenty-nine submissions out to literary magazines and presses.  If the pattern of percentage holds across all literary magazines, I would have paid $21.75 just to see my work safely to editors' doors.  I'm also the not-so-proud owner of over fifty rejections for 2018 (so far).  I don't have enough money to waste on someone else's "no".

Disabled people are the world's largest minority group.  In many of the "First World" nations, we are a big chunk of the population in poverty.  Less money means less opportunity to submit our work.  Submission fees are just another way disabled people are kept out of publishing and literary communities.
A few final notes:

1.  The percentage of literary magazines charging fees might be wildly incorrect.  I took a few lists of top-tier magazines and counted how many required fees.

2.  Poverty also intersects race.  Our non-white siblings are at an even greater disadvantage, though I couldn't find definitive numbers evidence indicates this is truth.

3.  I did look into other countries' statistics, focusing on the "developed" ones.  I used more resources for my figures, but I didn't wish to bore anyone with lists.  For anyone truly curious, I'll provide them if you ask.

Friday, September 14, 2018

Tips for Submitting Work as a Spoonie

1.  Wait for a "good" day.
No energy and brain fog guarantee mistakes and frustration.

2.  Start from a list. 
There are websites that post monthly or even weekly lists of literary magazines and presses open to submissions.  Some post only fee-free opportunities.  These allow you to begin with a manageable pool.


3.  Narrow the list and make it yours.
The computer's search function is your friend.  Type in your genre and scroll through the entries.  Look at each for restrictions, fees, etc.  Write down any that seem to fit.  Be aware of any deadlines listed (and only select the ones you think you'll get to in time).

4.  Pick a number of places to check.
Decide how many markets you can research without depleting yourself or having all the information run together.  If you aren't sure, start with two.  Check guidelines and sample work, contributors' biographies and editors' blogs.  Sometimes, editors give interviews which are more helpful than many writers realize.  Take notes.  Cut any places that don't seem like they fit.

This step is going to take a number of days due to spreading out the necessary research.  I use deadlines to dictate which magazines/presses to check first.

5.  Prepare yourself beforehand.
Finished work should always be in a separate folder for easy access.  You should also have different versions of a print-ready biography (different lengths, credits based on genre, etc.) and a cover letter template.  It might take a while to set up, but it's worth it.

6.  Keep a submission log that's easy to track.
Matching pieces to places and sending them will take time... let it.  Then, keep a document with where you sent what when.  Update it the second something is successfully sent, don't wait.  You don't want to forget what you sent.  And you will forget, especially if you send out a lot.

Some writers use Excel, but I use a normal document.  The search/find function helps me here, also.  I can search by literary magazine or story/poem title instantly.

7.  If you have a lot of work, list it.
As a poet, I have a lot of finished work on my computer.  I keep all my poem (and story) titles in a master document with the name of any magazines that have them.  Why?  Because I simultaneously submit and want to know how many places are considering a piece at any time.  Plus, if I want to send something to a press that doesn't allow "sim subs", I know which poems are available.  My submission log can't tell me what isn't sent.

8. Don't set impossible goals.
Want to know a secret?  I haven't submitted my poetry or fiction anywhere in a month.  I try to, but life keeps making other demands.  It bugs me a little, but I'm mostly okay with it.  I'm still a writer if no one is reading my stuff.  So are you.

9.  Back up your writing.
Not a spoonie thing, just do it.

Friday, September 7, 2018

Science Fiction and Accessibility

A yellow dog with long brown ears and a white beard is sitting in a blue wheelchair that zips by the outside world as though rocket-powered.

The year is 2732.  Humans have colonized Mars and three other planets in two different galaxies.  We have contact with no less than sixteen alien species.  There are spaceships, teleporters, laser guns, and androids.  But there are zero disabled/neurodivergent people.

If one in four of us is disabled, where are we in the future?  Are we cured?  Dead?  Were we raptured by the alien god of Scientology?  Disabled and neurodivergent people are often not a part of the thousands of potential futures writers dream of.  Seven types of aliens?  Sure!  Twenty-one types of plasma guns?  Oh, yeah!  An autistic pilot?  Uh, nope.  We're not even a footnote on planets and universes made from scratch.

Sci-fi authors who bring up our absence pick "cure" as the explanation.  No thought is given to people who don't want a cure.  Every disease, disability, deformity, and neurological condition is eradicated—something too convenient and unlikely because of the sheer scope and number of causes each can have.

In a world with oodles of high-level tech, accessibility would be unparalleled.  Everyone could use mechs.  Modified spaceships would be available to the general public.  We could finally have a society built for every type of person!  Our disabilities could remain present without sacrificing our chance to be fully integrated.  And that, dear readers, is often seen as the biggest feat of fiction in any possible universe.

What worlds will you create?

Friday, August 31, 2018

More List Updates (Need Recommendations!)

It's becoming more difficult to draw the line on sites and publications I want people to know about, and the ones that fit with the blog.  I don't want just straight activism without a literary component.  But, what about disability/neurodivergence culture?  What about sites that aren't about writing, but want disabled/neurodivergent writers taking on our topics?  It's hard.

I'm also running out of new listings for inclusive publications.  Just because editors claim they're dedicated to diversity, doesn't mean they are.

If you have recommendations, please share!
Magazines, Websites, Etc. (for Us)

Cripple Magazine

Chronically Lit

DisABILITY & Romance (Open Facebook Group)

Explicit Literary Journal

Sins Invalid

Disability Visibility Project

Inclusive Mainstream Publications:  

Susan / The Journal

Cotton Xenomorph

Frontier Poetry

Removed:  The Binnacle (defunct), Geometry Literary (charges submission fee)

Friday, August 24, 2018

New Online Reading Series! (Tentative Start 9/2)

Update:   Sunday at 2PM U.S. East Coast time is now what's listed as the start.

Dov Zeller is starting a new reading series/salon for spoonies and those who have difficulty attending offline events!  I think our community could really benefit from things like this, and I've received updates directly from him as things progressed.

If you're interested, please get in contact with him via Twitter or fill out the survey below.  (I realize he mentions email as a way of contact, but I'm not listing his email address here because he hasn't cleared it.)

His email announcement follows:

Hi all,

I am writing because I am trying to start a "spoonie salon", a reading series and potentially some open mics and storytelling gatherings via video conferencing for spoonies and other people who struggle to attend offline events.

The first event is likely to be on Sept 2nd around noon East Coast U.S. time and as it will be tres experimental, I will likely be doing the reading and potentially another spoonie, a poet, will read as well. The gathering will happen via Zoom.

It would be wonderful if you could attend if you are able, whether you are a spoonie or no, because I would love feedback and support. That said, I am mainly sending this email in the hopes that you will share about the series (there is a tweet and a form linked below) with people you think might be interested in reading and/or attending.

All writers are welcome to contact me if they are interested in reading. I will soon have a more "official" submissions protocol, but for now, if people could just drop me an email and let me know a bit about their work, that would be great!

Thanks for taking the time to read this and I hope you are managing as well as can be.



Friday, August 17, 2018

An Ode to The Temple of the Golden Pavillion by Darrell Gilkes

As someone with Cerebral Palsy, I have always looked to literature for somewhat of an answer. In a society filled with archetypes of how disability should be portrayed, I have constantly yearned for literature that showed the honest side of disability. No, I'm not talking about those books which discuss "How I succeeded despite my disability." as the dimensions of "success" are entirely objective.

What I seek out is the struggle aspect: how do people find their identity within their own disability and how to they come to terms with it?

In my journey, I have found few pieces of literature that really tackle this issue, and those that do "cop-out" their answer to the most repetitive of concepts such as love, friendship, or hope. However, there is one book I found that showed a more honest version of disability: The Temple of the Golden Pavillion by Yukio Mishima.

The Temple of the Golden Pavillion highlights a man named Mizoguchi, a young man that has a stutter. Mizoguchi has an obsession with the concept of beauty and has a growing urge to destroy this beauty, in any way he can. Such an outburst can resonate with many who have physical disabilities since we cannot live up to society's standards of "beauty," often we try to reject the concept as a whole.

The most interesting part of the book however, is when Mizoguchi meets his friend Kashiwagi. Kashiwagi, too has a disability known as clubfeet. The intersectionality between the two disabilities allows for a different kind of dialogue regarding the concept of disability right from the moment they meet:

“His most striking characteristic was that he had two rather powerful-looking clubfeet…His walk was a sort of exaggerated dance, utterly lacking in anything commonplace…I was relieved at the sight of his deformity. From the outset his clubfeet signified agreement with the condition in which I found myself.”

Here we see the curious idea of two people understanding each other due to disability. Disability becomes a concept here that bonds two people together as opposed to something that separates people from the "normal" world. It's framed as a "them versus the world" idea for a good part of the novel as the two work together on tackling issues of beauty. Kashiwagi of course has his own ideas when it comes to being "beautiful," as instead of rejecting the idea he uses his disability as a way to manipulate those around him. He boasts in the fact that he can make women "fall in love with my clubfeet" and purposely falls in front of a girl as a way to get into her house (and an obvious attempt to get into bed with her).

It is then that Mizoguchi is disturbed by this sight and runs away. It's interesting to note that even though the two boys could understand each other due to disability, they both have vastly different ideas about how disability functions in their life, as well as how to properly use it in society. It shows that the identity of disability is not static and is interpreted entirely differently from person to person. On an ideological level, how one applies and reacts to their disability becomes an entirely subjective idea.

Curiously, Mizoguchi believes that disability is beautiful and draws parallels between the two, saying, "Cripples and lovely women are both tired of being looked at, they are weary of an existence that involves constantly being observed, they feel hemmed in; and they return the gaze by means of that very existence itself. The one who really looks is the one who wins."

The concept of disability and beauty are similar for the character because they are restricted to what they are by their identity. Mizoguchi doesn't taint his identity, because he believes his disability of stuttering to be part of the beauty of the world. As opposed to twisting it for more personal gains like Kashiwagi, he holds it firm as something that is to be beautiful.

The Temple of the Golden Pavillion provides an honest look into the lives of two boys, with two different disabilities that end up bonding together over similarities while also highlighting that what disability can mean to a person is dramatically different for each person. For anybody looking for a challenging text regarding disability identity and what it means, I would highly recommend this book.

Darrell Gilkes is a English and Special Education Teacher from Newmarket, Ontario, Canada. In his free time, he tutors students and has a deep passion for writing in the hopes that one day he might get his own book released. Darrell has been featured in Anthologies such as Seeing Beyond the Surface as well as The Book of Hope: 31 True Stories from Real People Who Didn't Give Up.  He enjoys writing about how it feels to have a disability and the different reactions or experiences one can have to it! You can contact Darrell at his LinkedIn or at darrell[dot]gilkes[at]

Friday, August 10, 2018

If You Give the Crips a (Writers') Conference

A bit oversimplified with a huge dash of optimism:

If you give the crips a conference, they'll feel like they belong.

If they feel like they belong, then they'll start to network.

If the cripples start to network, they'll pitch and submit more.

If they pitch and submit more, they'll publish more.

If they publish more, they'll want another conference.

Ableds say:  "Poor writers can't afford to attend conferences.  It's not a disability issue, it's a class issue."

Employed people with disabilities make around 33% less income than their able-bodied counterparts.  The unemployment rate for disabled people is almost twice that of their able-bodied peers.  Class and disability status are often linked.

Ableds say:  "A lot of writers don't attend conferences, and they are fine."

There is power in the knowledge you're welcome somewhere.  Even if a disabled person had the time and money, they still couldn't go due to the lack of accessibility.  It means we're forgettable, unimportant, or don't belong.

Ableds say:  "Accessibility costs money."

So?  Organizing a conference in general costs money!  Are people complaining that they're paying for food or presenters?  Most conferences are held in fairly large cities.  Cities mean a wider choice of venues.  More choice means accessibility can be considered, just like size or location are considered.  Accessibility isn't even on most organizers' radars!

"If you give the crips a conference, they'll feel like they belong."  It's not that easy, but it's a start.  We're waiting.