Able in this Diverse Universe contest winners!

I am excited to announce the winners of the Able in this Diverse Universe essay contest!

Dec.1-Feb. 29 an essay contest hosted by Karrie Higgins Able in this Diverse Universe to benefit a boy and his dog

With so many incredible submissions, it was a difficult decision. It moved me beyond words to read so many raw, powerful, emotional, and beautiful essays about the disability experience. Thank you to everyone who submitted. Remember, you are all winners, because each and every one of you helped little Noah Ainslie get his therapy dog!

Without further ado, the winners are …

1st Placejoining a stream, grace is still possible by seeley quest (this essay is not published on the site, but when/if it publishes elsewhere, I will be sure to link it!)

This stream of consciousness essay moves like a literal stream through the topography of the disability experience, cutting through layers of politics, identity, and sexuality. The writing is bold and fearless, with moments so revelatory, they carry away existing assumptions about disability like a flood.

seeley quest lived in the San Francisco Bay Area from 1998 till 2015, and is now in a nomadic period. Sie worked at Cody’s Books and Modern Times Bookstore for twelve years, and often performed around the Bay Area, last featuring in the ’14 LitCrawl. Seeley’s also toured to present in D.C. for the True Spirit Conference, L.A. for Trans/Giving, NYC for the Stages Transgender Theater Festival, New Orleans for Saints and Sinners Literary Festival, and to Vancouver, Toronto, and many other U.S. cities and colleges. Sie has poems published in the book Disability Culture and Community Performance: Find a Strange and Twisted Shape, and issue 2 of of Them: a Trans Lit Journal. More of hir work’s at http://sinsinvalid.org/.

2nd PlaceBeauty in Mind by Sean Mahoney

Beauty in Mind is a fantastically fragmentary, speculative, and gorgeous essay that meditates on how illness both alters the human experience and is part of it. Powerful, haunting passages reveal how illness creeps into every corner of the psyche.

Sean J Mahoney lives with his wife, her parents, two Uglydolls, and three dogs in Santa Ana, California. He works in geophysics. Out-boozed by Franciscan monks in Ireland. Swimming with Whale Sharks in Mexico. Sean believes that punk rock miraculously survives, that Judas was a way better singer than Jesus, and that diatomaceous earth is a not well known enough gardening marvel.

3rd Place: Like Echoes in the Mist by Lizz Schumer

Like Echoes in the Mist meditates on what it means to lose memories to the brain fog of fibromyalgia. Who are we without memory? What does it mean to move through the world as if managing someone else’s life? What does it mean to write nonfiction when memory is slipping away?

Lizz Schumer is a writer, artist and teacher living and working in Buffalo, N.Y. Her work deals largely with the interplay between the personal and universal, and how one’s personal development is influenced by both cultural and environmental factors. Lizz’s writing has appeared on Salon.com, XOJane.com, Thoughtcatalog.com, The Manifest-Station, Wordgathering, Breath & Shadow, Connotation Press, Minerva Rising, Love Your Rebellion and others. She can be found at lizzschumer.com, @eschumer on Twitter, @lizzschumer on Instagram and Facebook.com/authorlizzschumer

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Truthfully, it was so hard to choose! Thank you again to everyone who submitted!

Prince and the Sparkle Brains (cw: disability, ableism, sexual abuse)

The day Prince died, I was walking to the audiologist office to pick out hearing aids, Purple Rain playing on my purple iPod, my lipstick-red walking cane tapping its drumbeat on the sidewalk, vibrating through my wrist bones to my elbow bones to my shoulders to my clavicles to my brain, telling me: I am whole. Without my cane, without that drumbeat, my brain gets confused: Where is my musical limb?

The cane makes music just for me. When I walk to the beat, I drum to the beat. Doesn’t matter about my hearing anymore. I am a walking musical instrument.

Except it does matter, because certain music saved my life. Certain music still saves my life.

Maybe I can hear Prince like I did when I was a kid, I thought. How much of his music am I missing? What frequency is his voice?

I wanted a purple hearing aid to match my pastel purple and pink hair. Unicorn hair.

Later, in the office, disappointment: hearing aids tiny as earrings, designed to be hidden behind my ear lobe like something shameful, scattered across the desk in colors as dull as thumb drives or computer parts: boring blue, boring silver, boring beige. 

No purple.

Then I saw the flash of red. Hot red. Carousel red. Like Little Red Corvettes for my ears. They will clash with my pink glitter glasses, I thought. They will clash with my mint green cat-eyes. They will clash with my hair. 

“You’re going to want the red ones,” the audiologist said. She was looking at my handmade pageboy hat, white with black vintage typewriters printed on it, the one I sewed because it would make me stand out, the same reason I sew all my skirts, bags, and other clothes. I have to be different. I love to be different. I need to be different.

a pale woman with pink hair stands in profile, wearing a white cotton pageboy hat with black vintage typewriters printed on it.

She pointed to my cane. “You’re a colorful personality. I can tell.”

I smiled.

“The colorful ones aren’t for everyone. But they’re for you.”

___

They are for me.

As a kid growing up with epilepsy, I made myself colorful as a survival strategy.

Age 14, a sharp, distinct, intentional before and after: Before seizures, I was the shy, quiet girl drowning in baggy kitten sweatshirts and Wrangler jeans; after seizures, I showed up to school in fishnets, combat boots, heavy black eyeliner, and dyed red-platinum-orange-pink-black (whatever fit the mood that week) hair. While the other kids whispered Karrie is on drugs, Karrie is nuts, Karrie pisses her pants, Karrie is faking, Karrie is a freak, I said fuck it. I will show them a freak. My clothes got weirder. My writing got weirder. My musical tastes got weirder. My art got weirder. I got weirder.

I didn’t know until years later that Prince did the same damn thing. Prince had epilepsy, too. Prince got freaky as survival strategy.

In 2009, he talked about his epilepsy publicly for the first time on PBS with Tavis Smiley. “From that point on,” he said, “I’ve been having to deal with a lot of things, getting teased a lot in school. And early in my career I tried to compensate by being as flashy as I could and as noisy as I could.”

Prince was a walking disability poetics.

After that, when I listened to his music, I thought: Prince has a Sparkle Brain. 

___

Sparkle Brain. My term for my Epileptic, Bipolar, Chiarian, PTSD-brain–for any neurodivergent brain. Sparkle Brain is big tent. Autistic brains are sparkly. Psychogenic Non-Epileptic Seizure brains are sparkly. Sensory disordered brains are sparkly. Neurodiversity in all its forms is sparkly.

I mean sparkle literally: my brain is extra electric. When my brain lights up, it sparkles like it’s 1999.

But I mean it figuratively, too: sparkly, like a disco ball. A Sparkle Brain is shiny. A Sparkle Brain is beautiful.

Sparkle Brain is my fuck you to neurologists who only see me as broken. My fuck you to editors who want me to cut epilepsy out of my writing because they don’t think it’s relevant, they don’t think it sells, they don’t think it’s sexy. My fuck you to neurotypicals who think I need to be fixed.

Sparkle Brain is Disability Poetics.

___

When I was fifteen, the neurologists told me not to dream big. They said I lacked realism in my aspirations.

scan from hospital chart that says, "may lack realism in her aspirations."

My aspirations: earn a PHD, write books.

Prince is the affirmative defense.

Prince had a Sparkle Brain. Prince dreamed big. Prince made music so sparkly the neurotypicals are jelly.

I wish I had known about his epilepsy back then. As a working class (and often poor) kid with parents who didn’t get it and didn’t have the money or time or education to advocate, pre-ADA, I believed what the neurologists said. Don’t dream big. Don’t dream big. Don’t dream big. I heard it in my head like an ear worm, like tinnitus made of words.

___

Last year, after the largest writing organization in the country, AWP, rejected every single disability panel for its annual conference, I filed an ADA complaint, and the Department of Justice mailed me a letter explaining they lacked resources to investigate. On the second page: a list of assisted living facilities and voc rehab programs.

Go bag stuff at Goodwill, they were saying. They wanted to funnel me into the sub-minimum wage disabled labor pool.

Don’t dream big. May lack realism in her aspirations. 

___

Lately, it’s been hard to love my Sparkle Brain. I am struggling with word-finding, suspected auditory processing disorder, dizziness (hence, the walking cane), falls, eye-tracking problems, tinnitus, more frequent seizures, and fatigue.

When I got accepted into a PHD program, I asked friends for advice seeking accommodations. They said, “Whatever you do, do not use the word ‘cognitive.’ Ever. They will think you are dumb.”

Even among people with disabilities, there’s an ableist hierarchy: So long as your brain is OK, you are OK.

I bought into that shit. I internalized it. I was ashamed.

Once, I told a friend, “I don’t have a learning disability. I have cognitive disabilities.”

Later, when I found out my (maybe) auditory processing disorder is a learning disability, I thought: Will anyone ever believe me about my high IQ? Will people think I am stupid?

That’s internalized ableism, and that’s exactly why I can’t keep this stuff secret and call it self-protection. It isn’t protection; it’s destruction.

What would Prince say? He would say: get freaky with it. Make it shiny. Make it loud. Make it your art.

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Sparkle Brain is intersectional.

There was a boy I liked in high school. He told people I flopped like a fish. I dragged him by the arm into the hallway and made him say it to my face. He refused at first, and then, cheeks flushed and head hung in shame, he mumbled it.

“Look me in the eye,” I said. “And say it again. I dare you.”

And he did. And I punched him.

Preach whatever you want about nonviolence, but he never said it again.

He got beat up by a girl.

And not just any girl, but the epileptic girl. 

That was survival strategy, too: Defy gender expectations.

Being epileptic was one thing. Being a girl with epilepsy was another. I hated being a girl. I didn’t want to be a boy, but I sure as hell didn’t want to be a girl.

__

Prince in that video for When Doves Cry, the way he crawled across that floor, all lean and sinewy, but soft, tooBoy, girl, it didn’t fucking matter.

___

 

I had sex for the first time when I was eight, or at least that’s the first time I can corroborate. It was 1983. Little Red Corvette was a hit. My brother, the fast-car-driving mechanophiliac was sleeping on our couch.

I was his Little Red Corvette.

___

If you want to get away with rape, rape an epileptic. Nobody believes us. Nobody cares. We are crazy. We are hysterical.

Clippings from my hospital records. They convey an argument between doctors about the nature of my seizures. In large text in the center, it says: suspected hysterical seizure disorder.

We are unreliable witnesses. We have bad memories. We are liars.

___

In high school, a teacher–not just any teacher, but the most popular high school baseball coach in the state, our very own Cedar Rapids, Iowa, version of goddamned Jerry Sandusky–forced his hand down the front of my jeans into my panties, yanked me toward him by my waistband, and whispered so close to my face I could taste his sour breath, “I know things aren’t right at home.”

He said it like a threat. Nobody will believe you. You’re the freak. The epileptic. The poor, white trash. The kid with the father who skids into the driveway in his rusty Chevy pickup, breath reeking of alcohol. I know things aren’t right at home. 

Later, when I overdosed on my epilepsy meds, he sent packets of math homework to the psych ward and refused to tutor me.

Don’t dream big. May lack realism in her aspirations.

When he died and everyone was posting eulogies on Facebook, I spilled it. “I waited half a lifetime to tell this story,” I said, “because none of you would have ever believed it.”

He got a baseball field named after him. I got unfriended.

___

Once, my father heard Darling Nikki blasting from my bedroom, and he called it trash. “No daughter of mine is going to play music like that.”

Music like that. Music that made me feel like sex was OK, that I was OK, that my body wasn’t filthy, ruined, that maybe it even held secret powers, that I knew things the other kids didn’t. That I wasn’t trash.

You have to understand: sexual abuse sometimes felt good. It’s a normal physiological response. I knew stuff the other kids didn’t.

It wasn’t just the lyrics. It was that voice. God, the way Prince could grind with his voice. My father heard a man celebrating a woman grinding. My father heard something threatening to the social order in our house, where he ruled over my mother, my sister, and me with an iron fist and the buckle end of a belt.

That video for When Doves Cry, when Prince pulls his father off his mother. Violence. Sex. Ambiguous gender.

___

Music like that. My father screamed at me when he caught me with my hands in my underpants. I was seven or eight. I had already been to the doctor for unexplained bleeding, unexplained infections. Nobody made the connection with my brother. I was shameful. I was sinful. I got a beating with the buckle end of the belt.

Later, when the truth about my brother came out, my father didn’t believe it. He visited him in secret. A couple years ago, I mapped his criminal traffic violations to prove it. He visited my brother, praised my brother, called him his favorite son.

My father was more disgusted about me touching myself than my brother touching me.

Prince told me, fuck that shit.

___

My brother taught me my value was in my body, in my looks–not my brain.

My father did, too. Once, as the entire extended family watched from the dinner table, he lifted my skirt until my panties were showing, and said, “The boys must like it.”

___

When I got prescribed a walking cane, I read shit like this on the Internet. I thought: I will never be sexy again.

Strangers feel entitled to tell me: You would be so pretty without the cane.

But you know what? Prince had a walking cane. He had a goddamned sparkly rhinestoned cane. And he was still sexy AF, and only liars would deny it.

Prince is the affirmative defense, always.

Prince was a walking, sparkly disability poetics.

___

I have a collection of walking canes now. All loud, all colorful.

___

 

When a fellow Sparkle Brain dies young, I take it hard. Sparkle Brains are 11x more likely to leave this earth too soon. They are more likely to die if they abuse drugs than non-sparkles who do. They are more likely to commit suicide.

The Sparkle Life is a tough life. The Sparkle Life burns out fast, like a high-wattage bulb.

I feel the clock ticking every minute of every day. I swear I even hear it: tick tick tick tick tick tick tick tick tick tick tick tick tick tick.

My first thought when I read Prince died: Did the epilepsy get him?

When I shared this fear with friends, they said things like, “I heard it was a drug overdose.” “He was addicted to painkillers.” “It would be sadder if it were a drug overdose.”

They do not know the fear. They do not hear the clock ticking like I do.

They do not understand: his disabilities cannot be erased. Even if it was drugs, it is still about disability. Pain is disability. Addiction is disability. And epileptics, if they do abuse drugs, are more likely to die young.

___

The past few days, friends have posted tributes: Prince helped them love their broken, weird selves, they say.  It’s beautiful, how he did that. But they leave out his epilepsy, the whole reason he made himself so colorful in the first place. They leave out the disability poetics.

 

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Prince was intersectional in more ways than one.

As a straight, white woman, my experience of disability is different from an LGBTQA person of color, for a lot of reasons, and I want to be blunt about that, because so often, race, sexual orientation, and gender identity get erased from the disability experience. Prince meant a lot to me, but there were a lot of things he couldn’t mean to me, not like he did to Ekundayo Afolayan or Jack Qu’emi Gutiérrez.

Read those stories. Learn. Do not erase race from the story. Do not erase gender identity and sexual orientation. Do not erase intersectionality.

___

My able friends were surprised when I posted on Facebook about Prince’s Sparkle Brain.

They might have read about it, they said, but they forgot.

But we, the Sparkle Brains, we never forgot. It meant everything.

___

When I got home from the audiologist, the news about Prince broke. It’s too late, I thought. Even with hearing aids, I will never hear him like I used to. It will never be the same. 

But the truth is, I never understood music. I never heard it like other people hear it. In elementary school, when we learned the keyboards, I didn’t understand the scales. I had trouble discerning subtle differences in tones. I memorized finger positions–visually, I mean, like snapshots. I heard notes as beats.

It’s how I process poetry, too. I do not hear stresses. I struggle with scansion.

That’s the auditory processing disorder. The learning disability. The one I refuse to be ashamed of.

The one that means maybe I will always hear the music like I used to. Maybe even with my hearing loss, I am not losing anything. Maybe sometimes a learning disability means you learn things other people don’t.

___

The day after Prince died, I walked with my purple cane and cried and cried, blasting Darling Nikki and Little Red Corvette on my iPod.

I felt the tick tick tick tick tick tick tick tick tick tick acutely. I felt the drumbeat of my cane. I am a walking musical instrument, I thought. My body makes music just for me.

I am making music with Prince.

Lucky to be alive

Content warning: ableism, suicide, sexual abuse

 

___

Last night, a stranger said, “Go kill yourself.”

Does he know I am 4x more likely to do that because of my epilepsy? That my bipolar and PTSD and history of sexual abuse tick up my risk sky high?

Does he know I have already tried?

___

In my newsfeed, headline after headline about Zika and abortion. Sentences like this one: “Zika could easily entrap American women in areas with standing water that breeds mosquitoes, closed clinics, no access to the later abortions a microcephaly diagnosis might require.”

Require.

I have a neural tube birth defect. I have a too-small skull and a screwed-up, epileptic brain. What do able people think should have been required for me?

Able people pretend, Of course we don’t mean you!

But they do. They do.

Before able people know I am epileptic: You are so selfish for not wanting a child!
After able people know I am epileptic: You are so selfless for sparing a child a disability!

It wasn’t that long ago that I could have been locked up and sterilized. In my lifetime, even.

Able people did that. Able people still do that, not with laws but with shame. Instead of locking me up, they tell me it’s so, so good that I don’t want to reproduce.

Which, when you think about it, is a lot like saying I should never have been born. They want me erased from the genetic record. They want me contained, like a virus.

__

I am pro-choice.

I am not talking about choice.

I am talking about how it feels as a disabled person to witness panic about disabled bodies coming into this world. 

I am not talking about the nightmare Catch-22 of being forbidden access to birth control and abortion and being told not to get pregnant.

I am talking about how it feels as a disabled person to witness panic about disabled bodies coming into this world. 

___

You say: But we don’t mean all disabled babies! Zika is different!

Let me repeat:

Before able people know I am epileptic: You are so selfish for not wanting a child!
After able people know I am epileptic: You are so selfless for sparing a child a disability!

It’s not just Zika.

 ___

Ever since I got my walking cane, able people call it a weapon. They joke that I can use it to beat people up. They joke that I should get one with a concealed sword.

I started joking about it, too, even though I don’t think I could beat up anyone with my cane. I need the cane. I fall without the cane.

Still, something in that image of my cane as an open-carry weapon speaks to me. I like the idea of my mobility device as a weapon. I like it because I know, deep down, my basic existence is under attack every second of every day. I am lucky to be alive. I am lucky able people let me be born at all.

 

Extended deadline & lower submission fee for the Able in This Diverse Universe essay contest

If you have been thinking about submitting to the Able in this Diverse Universe essay contest, I have good news. The deadline has been extended to March 31st, and the submission fee has been dropped to $10. EEEEK, what are you waiting for?

Everything else remains the same: submit up to 2,000 words of nonfiction on ableism, disability, access, and overcoming.

I am very open to experimental writing and to non-traditional definitions of nonfiction, so get speculative if you want. Push the boundaries. Or not. Traditional is good, too. I am also excited about diverse interpretations of the themes.

All submissions are read with no identifying information, so don’t hold back. It’s a win-win. Help Noah get his therapy dog, and maybe win a cash prize for your writing, too!

My co-judges are amazing: neuroscientist and writer Dr. Kwame Brown, mental wellness writer and former international model Jackie Cioffa, Art Saves Lives International director and artist Charlotte Farhan. Seriously good people!

For more information about Noah and his therapy dog, or if you are interested in supporting Noah but would rather donate directly, here is the Noah Ainslie’s Service Dog Fund GoFundMe page.

 

Noah kneels on all fours and looks into the eyes of Appa, his white, fluffy, poodle. Click to take you straight to the Submittable.

I carry my brother’s body

White apartment door with a golden letter A door plate. On the left, there is a window and a framed picture (photo taken too far back to make out detail). The lighting is dark, and there is a black ring around the edges of the image.
Photo by the Cedar Rapids Police, taken at the scene of my brother’s death. His front door.

For awhile, I carried my brother’s crime scene photos everywhere. I couldn’t bear to leave them–him–behind. What if our building burned down? What if the earthquake hit? Then I couldn’t bear to carry the physical photos because it could damage them. The police aren’t holding onto those negatives forever. I scanned all 24, saved them to a memory card that I tucked into my purse, and texted them to myself, one by one, over the course of a few weeks.

Scroll through my iPhone camera roll, and there they are: my brother’s apartment door, mixed in with photos of the temple doors in Salt Lake City; my brother’s body in fetal position, jumbled up with downtown graffiti, like I stumbled onto his corpse on the sidewalk.

Ever since the pictures arrived in the mail, I have these panic attacks: What if the police find them? What if they think I killed him? Who the hell stores pictures of a corpse in their filing cabinet besides a serial killer or a cop?

Now that I have them in my phone, the panics are worse. It happened today, on a walk: What if I lose my phone and get arrested for murder? The scenario always ends the same way: my arrest. I am the one on the lam, not my brother. I am the one wanted for a crime, not my brother.

I know it’s not rational: The police released those photos to me. I was 1,915 miles away when my brother died. And he wasn’t even murdered.

Except he was.

On the day I got the photos in the mail, I stripped nude and crouched in front of my couch in an identical position to the one in which he was found, the fetal position, the cops called it. I curled the fingers of my left hand—all except the middle one, which I extended almost straight, as he did in his last moment, one final fuck you on his way into eternity.

I felt that fuck you. I felt it hard.

“Looking at those photos fucked up everything,” I tell my husband. He knows what I mean: the writing, everything. Nothing is the same. I haven’t been the same.

“I’m glad I saw them,” I say, and I mean it. “But I think, finally, I can say I took my research too far.”

I carry my brother’s body around. I carry this secret around. The photos fucked up everything. 

Able in this Diverse Universe Writing Contest is LIVE #disability #autism #writing

Exciting news! The Able in this Diverse Universe Essay Contest is now open for submissions!

Dec.1-Feb. 29 an essay contest hosted by Karrie Higgins Able in this Diverse Universe to benefit a boy and his dog. These words appear in a white bubble against a background of white with a black web-like pattern.

All submissions fees benefit the training and care of Noah Ainslie’s future Autism service dog, Appa.

Also exciting? One of our readers is none other than Dr. Kwame Brown.

The contest not only will help Noah, but it will also raise awareness about invisible disability and ableism, two issues near and dear to my heart (and many of my readers’ hearts).

A white, fluffy poodle dog licks a young boy's ear. The boy is wearing a purple shirt with a bird, dog, and horse silhouette on it in white. Behind them, a man watches on happily. The dog is Appa, and the boy is Noah!
Aw, what a sweet photo! Noah looks so happy.

From the Submittable:

Noah’s neurodiversity often manifests as sensory overwhelm. He has been learning coping mechanisms for six years, but still visibly struggles when it comes to conforming to neurotypical standards. He is high function on the spectrum which means he doesn’t “look like” he’s disabled. He is subjected to ableist expectations, often very aggressively and in public.

Noah has been called a brat, spoiled, selfish, bad and many other words that should never be applied to our youth due to his reactions to sensory overload. Noah has been rejected for his invisible disability. Even his psychiatric doctors have failed to understand the diagnoses they gave him and have labeled him as “oppositional,” telling his parents not to “reward” him for “defiance” when school becomes too much and he needs a written excuse to take a break.

Fortunately, his school is a supporter as is his pediatrician. Both have written letters in support Noah having a service dog. Because of that, Noah has been matched with a dog and trainer. Appa is that dog, a four-month-old Standard Poodle. In just a few days of bonding, Appa was already anticipating Noah’s needs and intervening as his anxiety grew. Right now, Appa is with his trainer learning how to be the best companion he can for Noah.

With Appa’s help, Noah will have access to the public spaces his anxiety prevents him from entering. More importantly, Noah will have a companion who loves him for who he is and does not judge his inability to conform to ableist public standards. To learn more about Noah, visit his GoFundMe page.

The winning essayist will receive $250 cash & publication right here on A True Testimony.

For the deets on the theme, the rules, and perhaps most enticing of all … prizes, go to the Submittable. Remember, everyone is a winner because every submission fee helps Noah get his service dog, Appa!

 

Four Paws for Noah #Writing Contests

I am honored and excited to be a judge for one of three writing contests in support of Four Paws for Noah. Every entry fee goes toward helping a nine-year-old boy with autism get his much-needed therapy dog.

Two of the contests are open for submissions right now!

The one I will be judging opens on December 1st, and I will have more details for you as soon as it goes live.

Until then, check out the other two  contests on Submittable and consider submitting. There are prizes! But as Shawna Ayoub Ainslie says over on The Honeyed Quill, everyone who submits is a winner because you have done something good for a little boy.

Update & Where to Find Me Around the Web Right Now

I have been remiss in posting this month, and I will come back to A True Testimony shortly, but I wanted to let you know where you can find me lately:

I got interviewed by the lovely and amazing Arielle Bernstein for the Saturday Rumpus!

Here’s a taste:

Right now, I am writing a grimoire/environmental memoir entitled Superman is My Temple Recommend, a twist on the ex-Mormon saying, “Jesus is My Temple Recommend.” It’s a textbook of magic that draws from Mormon theology, pollution science, environmental epigenetics, alchemy, Saturn Death Cult cosmology, theodicy, psychogeography, ancient magic, criminology, memory research, and of course, forensic science.

The ultimate goal is to write my brother into eternal life (which I sometimes believe in, and sometimes don’t) by incanting a magic spell for his atonement for his crimes. It’s an Isis and Osiris story, my own personal Book of Breathings: I am gathering his corpus delicti, like Isis recovering Osiris’s body parts along the Nile.

Last month, I appeared as a guest on Minorities in Publishing Podcast, talking disabilities and lit.

And a few of my posts have been picked up on HuffPost. Be sure and check out my review of QDA: Queer Disability Anthology on HuffPost. It’s an incredible and important book.

More to come as soon as I finish a whole lot of PHD applications. Yep, you read that correctly: PHD applications. Between the letters of intent, statements of purpose, artist statements, and personal statements … Stick a pencil in my eye; I’m done.

 

 

I can’t stand a world with my brother dead, but I can’t stand a world with him alive. #contentwarning #grief #writing #CSA

By this time on September 26th, 2008, my brother was naked and dead on the floor in a tiny apartment in Cedar Rapids, and nobody knew it.

Neighbors and passersby couldn’t see his body through the maroon sheet he draped over the living room window, the same way he draped a safari print sheet over the bedroom window. When I saw his makeshift blackout curtains in the crime scene photographs, I gasped. I do that, too: shades permanently drawn, a repulsion to too much light, to people looking in. When I am alone, I want to be alone.

“It appeared he had been dead for some time due to the lividity,” the police said in the crime scene report. Lividity: when blood, no longer pumped by the heart, sinks into the lowest part of the body. Face to floor, arms reaching out in child’s pose, my brother’s ribcage and neck filled with blood, and it fixed there like a birthmark.

Fixed, like an x-ray after the fixer solution freezes bones in place on the film, broken for eternity. Even when the police rolled my brother over, the blood didn’t slosh into other body parts. His vessels had already broken down. The blood had no way out.

He had been dead for some time.

I couldn’t imagine my brother dead until I saw those photos, and sometimes, I wish I hadn’t seen them. I finally took my research too far, I think. I can’t stand a world with him dead.

But I can’t stand a world with him alive, either.

If he had taken the plea deal instead of morphine, methadone, diazepam, gabapentin, and desmethyldiazepam, he would be alive right now. This second. Maybe fixing himself a meal in the cramped kitchen I have stared at in those photographs, amazed at the olive oil decanter on the counter. My brother drizzled olive oil on his salads, his bread?

He would be out of prison right now. His body would be curled up on the couch of his little apartment, the one I know intimately from the crime scene photographs, the one I never would have seen were it not for the crime scene photographs.

The one located right down the street from my parents’ apartment–not the address in the obituary, in another town. Meaning: My father knew everything. He knew, and he didn’t tell me. He didn’t tell me because I have testified. I could have helped put his golden child in prison.

I could have testified. 

In 1974, the Supreme Court of Iowa heard the appeal of Joseph Raymond Maestas, convicted of “committing lewd and lascivious acts in the presence and upon the body of a child under 16 years of age.” Maestas wanted the testimony of the victim’s older sisters thrown out because their allegations from six and ten years prior were “too remote” in time.

The court disagreed:

We believe the facts of this case, and particularly the intrafamilial nature and similarity of place of defendant’s misconduct, compel the conclusion the evidence of defendant’s prior acts was not too remote in time …

In other words, incest transcends time.

In 2010, State v. Cox called Maestas into question, though, and I only found out about my brother’s case in 2013. But in 2008, if my family hadn’t covered up my brother’s crime, I might have been on the witness list.

If my brother were alive today, his name and photograph would appear on the sex offender registry. I could know his GPS coordinates for life. I could watch his age progression from afar for life.

I could track him down, show up at his door. Try to fix this thing between us. Fix us. So the last picture wouldn’t be broken for eternity.

Except, if I am honest, I wouldn’t know about his final crime if he hadn’t died. I never bought the heart attack story my family fed me after the autopsy. It set my teeth on edge. It pecked at my insides like a scavenger until I was completely empty. My family lied, and I knew it. They lied to protect him. 

I had what the Mormons call a testimony, a burning in my bosom, a knowledge of things unseen. I was in the visitor center at Temple Square, bawling as I watched an informational video. Families can be together forever, it said. I sat down at the genealogy computers, searched my brother’s name, and got a hit: his social security number.

“Write it down,” a sister missionary said, sliding a scrap of paper and a pencil toward me.

Write it down. Like a mission call. I could run a background check, I thought. Know things about him he never told me in life.

But exposing his secrets meant exposing mine, too.

I carried my brother’s social security number in my wallet for years, taking it out sometimes to look at it the way normal sisters gaze at photos of their brothers.

I knew. I had a testimony. 

3:59 AM on March 2, 2013, in the dark of the morning when nobody could see me, a background check returned this result:

Case No: 08791 FECR009867

Charge: SEXUAL ABUSE 2ND DEGREE – 1978 (FELB)

Statute: 709.3

Case Initiation Date: 12/20/07

He did it again. He did it again. He did it again.

He got caught. He got caught. He got caught.

I paced the apartment chanting those words under my breath, wringing my hands, until my husband woke up, and I said, “You’re not going to believe this. The fucker did it again.”

For the first time in my life, I felt like I could tell the truth. I was free. (I have since learned it isn’t that simple, but more on that in a future post.)

Did my brother have to die to set me free? Did my brother have to die for me to be redeemed?

I can’t stand it, this world with him dead. But I can’t stand a world with him alive, either.

keeping secrets is my superpower, but I don’t want it anymore #disabilities #ableism #writing

Last weekend, after I published a rant about inspiration porn, I received several responses from able people suggesting I shouldn’t be angry because their intentions are good.

It sounded an awful lot like that fateful workshop in my MFA program when a “critique” of my essay about epilepsy consisted of classmates lecturing me about my “unfair” emotional responses to spoons getting crammed between my clenched teeth, strangers petting my hair, and unnecessary ambulances. I know people’s intentions are good, but that’s their subjective reality–not mine. My subjective reality is cracked teeth, astronomical emergency room bills, ER doctors treating me like a drug addict, and a lingering sense that my body doesn’t deserve boundaries.

Simply by sharing my subjective reality, I was “hurting their feelings.” Never mind how their reactions hurt me.

Looking back, I don’t think my classmates were reacting to my anger, though. I suspect they were reacting to statements like this:

Order is unhealthy. Order is a disorder.

It makes able people uncomfortable when they realize I have no interest in being neurotypical. It upsets the status quo because it means they are not superior beings with superior brains. After all, that’s the assumption underlying gaslighting: We know better than you do. 

The word "nope" appears on a black background.

I call that workshop “fateful” because that’s when I realized nonfiction (as a publishing enterprise, anyway) isn’t actually about telling the truth. It’s about conforming facts to a reality that bears no resemblance to mine. For a long, long time, I stopped portraying my subjective reality around disabilities. The funny thing is, the more I essentially “lied” (by omission), the more people saw my work as “true.”

Now, the same-old stuff is playing out in reactions to my essay, Strange Flowers, which recently acquired new readers thanks to being a Notable in Best American Essays 2015. Several readers demanded to know whether the piece is “fiction.” Others were curious if it represented some kind of amalgamation or composite, rather than straight-up memoir. Most didn’t seem to question the facts–that I had been sexually abused–but they most definitely questioned the way I processed those facts.

Strange Flowers is almost like a “coming out” piece in representing how my mind works. This is literally how I process memories, emotions, sickness, grief, and trauma. It’s how my brain works. Plain and simple. I knew when I wrote it that people might find it a little “weird.” I didn’t realize how weird.

Who is to say seizure auras, manic episodes, PTSD flashbacks, and dissociation aren’t every bit as “real” as any other experience, though? To me, they absolutely are. Frankly, what many people describe as “normal” cognition sounds alien and bizarre to me. When people ask me to critique their work, I sometimes get the urge to “magic” it up. But I recognize it’s my subjective bias doing it, and I tell my inner self to shut the hell up. I know other people experience the world differently, and I accept it. I take their work on its own terms.

The funny thing is, people will tell me the bipolar and epilepsy make my work what it is, that somehow it magically pops out in this quirky structure, but that is so far from the truth.

Right now, as I work on the book-in-progress, I am ribcage-deep in notebooks filled with unintelligible scrawl like this:

notebook page with my handwriting; words are scattered all over and mostly illegible

I filled those notebooks during a manic state so intense that I often describe myself then as an “alter ego.”

And yet, my alter ego is still Karrie Higgins. I am still her. I have to spell it out for people because do you know what happens when I admit to friends and fellow writers about these “altered states?” They rob me of credit for my skill and hard work. They say, “OH WOW, I wish I had that!” or “No wonder!”

The thing is, I could leave the notebooks a big, fat mess. I don’t, because I am a writer, and I know how to fucking write. I took Strange Flowers through at least 50 hardcore structural revisions. I did that in what I call my “wind tunnel” state, which is how I generally write: zero emotions, an empty feeling in body and mind. That’s when my writing gets done.

And the truth is, I am terrified to admit any of what I just said.

You know the old trope about how people with disabilities adapt by developing superpower senses? I developed the superpower of keeping secrets. I did it because people were always grooming me for their personal agendas.

My medical chart is a wasteland of notes from neurologists who claim I was not “appropriately” upset about seizures, therefore placing me under suspicion of conversion disorder or malingering to get attention. Want to know why I appeared calm and unruffled? Because when I did express my true emotions, I got pathologized for them, too. My mother and my doctors saw me as unreliable, depressed, potentially insane. It’s why I didn’t even know about my Chiari until I was 39 and all my epilepsy prescriptions got revoked (until recently). All my neurological symptoms got written off.

Not only that, but the doctors never actually asked how I felt. They observed my behavior and assumed.

Grooming. I used that word on purpose. I wanted the connotation of abuse. I mastered the art of suppressing my feelings as a child growing up physically, sexually, and emotionally abused. Because guess who else told me it would “hurt them” if I spoke up? That it was “wrong” to get angry?” That, in fact, I wasn’t being harmed at all because nobody intended any harm? That nobody is going to listen to some weird, fucked-up, angry girl? Yep. Abusers.

I figured out quickly that my expert emotional cloaking skills came in handy facing neurologists, bosses, friends, teachers, child abuse investigators, coaches, and the like, too. When people tell me I “shouldn’t” be angry, it feels awfully damn familiar.

But here’s the kicker: People pathologize me when I’m not angry, too. I frequently receive comments to the tune of, “It makes me very uncomfortable how you aren’t angry at your brother.” Never mind it has to do with my dissociation and de-realization. Never mind I have the right to feel about him how I fucking want to feel about him.

I can’t win.

Why should I have to keep secrets to maintain able people’s comfort? So many people told me I made them uncomfortable by ranting about inspiration porn. No matter that after one of my toughest weeks of symptoms in awhile, when I was at my lowest, inspiration porn plummeted me into a pit of depression. It actually made me question the point of going on.

Instead of harming myself, I decided to write something. To speak up. I did it during a time when it was fucking hard to find words, and I wrote from pure emotion (a rare state for me), without worrying too much about precision, because at that moment, precision was sending me into a spiral of word-finding hell. I was my true self, and for me, that’s something. That’s a big fucking something. I wasn’t going to write cheerfully about shit that made me want to die. OK?

What I’m saying here is, telling the truth is healthy. Telling the truth saves my life.

Remember in my previous post how I mentioned having a seizure on the track, and my coach scolded me, told me to “Have some pride?” That happened within the same 24-hour period as me getting questioned about a black eye that my father gave me and lying about it … just as I was groomed to do. I was a stone-cold, expert faker of emotion that day, and it worked. My father was off the hook.

It was also the same 24-hour period I tried to kill myself.

I don’t remember the events in such a neat, logical timeline, but it makes sense to me looking back: Keeping secrets is deadly.

And that’s exactly what people who tell me I shouldn’t be angry (or fill-in-the-blank-here) are suggesting I do: keep secrets.

Secrets might be my superpower, but the thing about taking off my mask is that I can’t put it back on.

A little bit of magic: Strange Flowers is a Notable for Best American Essays 2015

Tonight I got word that my essay, The Strange Flowers, has been included as a Notable Essay for Best American Essays 2015.

This news comes on the eve of the anticipated completion date for the National Archives gathering my brother’s military records to mail to me — including x-rays, which if you have read Strange Flowers, means everything.

Saturday is also the 7th anniversary of my brother’s death.

I am at work on a performance in which I re-enact his last moments according to the narrative provided by the Medical Examiner, wearing a garment sewn from cotton sateen printed with his police booking photograph. This performance will be brutal.

Fabric going under the foot of a serger machine. The fabric is printed with the black-and-white booking photo from my brother's police report.

Part of this work includes still photographs of me lying in the same position as his body, with our bodies superimposed in Photoshop. I am his Elijah.

1 Kings 17:21, King James Version:

And he stretched himself upon the child three times, and cried unto the Lord, and said, O Lord my God, I pray thee, let this child’s soul come into him again.

In the Mormon faith, Elijah is the prophet who handed over the priesthood keys to Joseph Smith, making it possible for temple sealings and posthumous baptisms. For families to be together forever. Elijah: the man who rode straight to heaven on a chariot of fire, the unofficial patron saint of fast cars.

My body is injected through and through with black carbon, the ink of my tattoos, all those polycyclic aromatic hydrocarbons, same as in automobile exhaust, the stuff of long-dead things on fire, forming DNA adducts inside my body, containing pigments and heavy metals known to be used in automobile paints. I am turning my body into a fast car, resurrecting my brother’s world. My body will be the vehicle of his resurrection. My body will be his chariot of fire.

I didn’t just get the tattoos for the chemistry, though. One of them, the replica of my brother’s rose tat, I got so I could steal the memory of getting it. I’m on a mission to steal and his absorb my brother’s memories. That’s what forgers do.

These past few months, I have been talking to his old friends, and it’s become addictive. “You laugh like him,” they tell me. “You’re so bubbly and fun to talk to.”

You sound like him. I feel like I am talking to him. 

I can’t get enough of it. It makes me think my magic is working.

And it feels a little magical getting word about Strange Flowers this week of all weeks. It feels, well, like a sign.

Able friends: I am not your inspiration porn #inspirationporn #disabilities #epilepsy #chiari #ptsd #bipolar

I woke up this morning after a fitful and sweaty non-sleep to a Facebook feed of inspiration porn. Three of the posts or memes ended with some variation on “What’s your excuse?”

My “excuse?” My Chiari, one of several neurological disabilities I have, is acting up, which means:

  • my skull feels like it is trying to separate from the dura mater
  • crushing pain in the back of my neck
  • poor coordination –  I dropped a glass from lack of coordination. A shard embedded in my foot, and I actually walked off with my foot bleeding and forgot –at that very moment–what had happened. My husband came home and found the glass, which he cleaned up. Which leads to the next symptom ….
  • brain fog
  • somnolence
  • dizziness and syncope
  • word-finding issues, which seem a bit better this morning, although this post has taken 2 1/2 hours. I’m on the same sentence in the book-in-progress that I was on several days ago, and I am not kidding. It is not “writer’s block,” so please don’t say, I know how that feels. Unless you have experienced forgetting your formidable vocabulary and fighting against your own brain to retrieve words that you know you know … Then nope. You don’t actually know how it feels.
  • severe anxiety

I guess I didn’t try hard enough, though, huh?

Some of these posts and memes came from people l consider(ed) trusted friends, but once disabled people become their inspiration porn, trust evaporates.

Why?

People with disabilities are not here to inspire able people or make them feel good about themselves. Inspiration porn not only objectifies people with disabilities by turning them into magic talismans, but it erases the very real issues many of us experience–issues for which nobody is offering accommodations, I might add, or for which there might not be an easy solution. I don’t have an “excuse.” I have multiple neurological disabilities (epilepsy, Chiari, PTSD, bipolar) that aren’t “fixable,” and I can’t always get work done, try as I might.

When I have a seizure, I am out, asleep, in bed for days. I can’t find words. I can’t function emotionally. Light hurts. There is literally nothing physically or mentally I can do to make those symptoms go away so I can inspire you all with my incredible achievements. But I guess, you know, I have no “excuse” because someone else out there with another disability overcame and achieved “in spite” of everything.

Inspiration porn operates from several assumptions, the key ones being:

  1. that anytime disabled people do anything “normal” people can do, it’s totally amazing, like our lives are so horrible and difficult and awful that any achievement is a shock (even as the memes or posts fail to acknowledge disability rights and accommodations that would facilitate achievement)
  2.  that all of us could “overcome” if only we tried harder! And if we fail to overcome, well then, it is all our fault. EVEN when some of the reasons we might fail involve able people creating barriers.
  3. exceptionalism as a “standard”: This guy is an inspiration because he’s EXCEPTIONAL, but … he SHOULD BE the “norm.” Which takes us back to #2.

Those assumptions are false taken on their own and wildly nonsensical taken together, which reveals the absurdity and objectification at the heart of inspiration porn.

I was an athlete once. I ran distance track. Want to know what happened when I had a seizure during a race? I recovered, only to find my coach scolding me. “Have some pride,” she said. “Cougars do NOT fall down on the track.” I guess I should have willed that seizure not to happen, huh? Because it’s my job to make able people gawk with amazement and wonder at my incredible athletic prowess in spite of electrical charges taking over my brain!

FUCK THAT.

How many people who post these memes have actually spoken up on behalf of disability rights? Oh, that’s right, I forgot: Inspiration porn is not about helping disabled people; it’s about inspiring able people. Because, you know, able people need so much help in this world, and disabled people are responsible for dishing it up.

How many of the people posting the “What’s your Excuse” bullshit are reading authors with disabilities? Sharing their work? Promoting their work? Clamoring for disabled athletes to get sponsorships? Signing petitions to get more accessibility to events? Standing up for disabled people when they see assholes on social media tearing them down? Oh, they aren’t?

The other fucked-up thing? I am dealing with some difficult shit to write my book, but because my disabilities are not visible, not dramatic in a way that people give a shit about, not “readable” in a cute little meme, not something people want to accommodate at their conferences, not something they even want to hear about, I might not get to publish my book. No, this does not mean I am giving up or that I refuse to overcome. I am speaking here about the bigoted, fucked-up, ableist reality of the lit world and the way inspiration porn perpetuates it.

Agents have actually said things to me like, “I don’t know if you can handle having a book” or “I don’t know if you can promote a book.” They mean because of my epilepsy, bipolar, and PTSD. Probably my Chiari, too, if they ever bothered to learn about it. They typically see me as some kind of magic epileptic “rain man” genius [their word, not mine], which is a form of inspiration porn. And yet! The subtext of what they say to me is: “I am not going to let you ‘overcome’ because you are not overcoming in the way I want you to.” They want me “fixed” in a very specific way, and that’s a big, fat, fucking nope. They wrap it up in paternalism. They want me to think I can’t handle telling my story. In reality, THEY can’t handle me telling my story. They are attracted to it for all the same reasons that terrify them, but they want to maintain this ableist monopoly on “overcoming.”

How many friends have emailed me PRIVATELY to say an essay of mine blew their minds, but then … they don’t share the link on Facebook, even though they typically share links? I guess they don’t want to be associated with that “quirky” way I think, huh? Or they don’t invite me to readings. I have never, not once, been invited to read at any event, and believe me, I know plenty of people in charge of readings. NOT ONCE. I have watched as friends with far fewer publication credits and honors or awards get invited to read, but not me. And what’s the difference? They’re abled. Likewise with academic positions.

Want to guess why I was shut out of writing groups in the past? Take a wild guess … It’s a “pain” to have to provide transportation for me.

Every inspiration porn post makes it THAT much harder for me to operate in the literary world, because now if I have bad days, it’s some kind of “excuse.” And not only that, but because friends have shared examples of disabled people “overcoming,” well, then … There’s no ableism in lit! I am wrong about the barriers and discrimination I face daily. I’m just whining. I am using my disabilities as an “excuse.”

You know what people with disabilities are REALLY “overcoming?” Wanna take a guess? It’s not our bodies. It’s not our screwed-up brain wiring. It’s not pain or wheelchairs or deafness or blindness. We are overcoming able people. The ones who keep us out of your fucking conferences and out of your writing groups and readings and magazines. And that’s a fucking fact.

QDA: Queer Disability Anthology: A Review

Sometimes, a book drops in your lap like a miracle you didn’t even know you needed. That’s what happened with QDA: A Queer Disability Anthology edited by Raymond Luczak and published by Squares & Rebels Press. I never thought speaking up about disability exclusion at AWP would connect me with a community of writers with disabilities, but that is what happened–starting with an email from Luczak inviting me to review the QDA anthology. I jumped at the chance because I didn’t know there were disability anthologies out there. I actually said out loud, “WHAT? This exists?”

Cover of QDA: Queer Disability Anthology with large fuschia and yellow flower

I also saw it as an opportunity to learn more about the intersection of sexuality and disability, something I knew cut much deeper than I understood as a straight, white woman with disabilities. In this regard, QDA blew my mind.

Many of the writers in QDA live in a perpetual state of marginalization, even among people who share their sexual orientation or disability, as in Missing What You Never Had: Autistic and Queer by Kit Mead, in which Mead explores being an “invisible queer person.” Mead’s queer sexual orientation and agender identity have come under fire because people with autism aren’t “supposed” to be either. At the same time, autism creates social barriers to queer spaces, such as the LGBT Pride parade. “[W]hen I tell people I’m autistic and queer,” Mead writes, “Will I be welcome in their spaces? Especially when I ask them to turn down the volume?”

Compartmentalization becomes survival strategy, perhaps best exemplified by Nola Weber’s essay, The Worst, Most Faithful Friend, about living with vaginismus and vestibulodynia, an “overgrowth of highly sensitive nerve endings”  in her vulva that sparks a “sharply prohibitive burn” at any attempt at penetration:

My physical limitation thus assured I could never excel at being straight, yet my unusual condition seemed just too suspicious not to question the coincidence that I was, in fact, quite queer … Perhaps this is why, in casual conversation, my vulvar pain and sexuality are not often co-disclosed: a lesbian who can’t be penetrated lacks the sympathy granted to her heterosexual counterpart, and a woman who has never felt straight sex might not ‘really’ be a lesbian.

It’s the ultimate double bind: her sexuality is questioned because of her disability, but her disability isn’t taken seriously because of her sexuality. For one part of herself to be taken seriously, the other must remain concealed.

If vulvar pain seems like a surprising condition to include in a volume about disability, that’s because the anthology embraces an expansive definition, something Weber feels unsure applies to her. “Applied to my own body,” she writes, “the term feels hyperbolic, dishonest, like a standard experience not quite mine to claim, and one true only in the most literal sense–in the sense of not being able.”

It’s one of the things that makes QDA so great. It does not exclude bodies the way so many cultural spaces do. Nor does it shy away from direct challenges on the dominant imagery of disability.

Mention disability, and the image that pops into many people’s minds is the universal access symbol of a person in a wheelchair:

Disabled Parking Sign with a blue background and a white drawing of a person using a wheelchair.

For some of the writers in QDA, that’s a source of frustration. In Disability Made Me Do It or Modeling for the Cause, Kenny Fries writes of being invited to model for a guide to gay sex, and when he is asked how to portray a disabled man having sex he says, “Don’t use a wheelchair to signify the man is disabled.” Fries agrees to model, but his worst fears come true when the artist suggests “amputating” one of his legs out of the drawing or adding a wheelchair so his disability will “read” better.

Later, Fries imagines the hot spray of a shower dissolving his limbs until he transforms into a male Venus de Milo, who “despite her scarred face and severed left foot, despite having the big toe cut off her right foot, and missing left nipple, not being real, is considered one of the most beautiful figures in the world.”

On the other hand, in The Politics of Pashing, Jax Jacki Brown revels in what she calls the “crip privilege” of “pashing” (French kissing) her girlfriend in public, as onlookers struggle to reconcile her public display of affection with her wheelchair. “Queer sexuality and disability places me so far outside the realms of everyday that it renders people silent … leaving me able to pash my lover in public without a nasty comment.” For her, it’s almost a super power.

That said, QDA is not inspiration porn. You know the memes: the little boy in the wheelchair playing basketball with the tagline, “Your excuse is invalid”; the woman with a prosthetic leg running a marathon, demanding, “What’s your excuse again?” Luczak gives inspiration porn the smackdown in a powerful introduction that weaves together his personal experiences as someone who is deaf with the larger cultural questions and themes in the anthology.

Neither is QDA about overcoming disability. In fact, as Luczak’s own story unfolds in the introduction and later in his poetry, a profound need to embrace his deafness emerges. Luczak, who longed so badly to learn sign language that he made off with his big brother’s Boy Scout Handbook for illicit self-lessons in the manual alphabet, imagines a world where genetic engineering has “fixed” deafness and deaf people will “walk forever wounded,/searching for our phantom hands/never quite there but never quiet.” The implications are profound: even when “cured,” deafness is not cured, because it is more than a disability.

But also, in spite of all the inspiration porn, able people seem to need disability:

“In time you hearing people, too,
will long for us savages,
communicating in grunts and gestures,
if only to remind you that you are God.
It is in your nature to seek imperfections,
rout them out. After all,
you must have something to do.”

Perhaps because of how QDA found its way into my mailbox, I couldn’t help but howl (in the best way) at How Not to Plan Disability Conferences by Lydia Brown. #1: “Form a planning committee without any actually disabled people on it.” (Quick, somebody dial A-W-P.)

And I cannot bow out without a mention of Liv Mammone’s should-be-required-reading-for-every-MFA-program piece, Advice to the Able-Bodied Poet Entering a Disability Poetics Workshop. Oh, hallelujah! Hard to pick a favorite from it, but “Don’t ask if able-bodied people have really said and did jaw-dropping things in my poems. It’s hard to invent ignorance” is a strong contender.

Ultimately, QDA is an appeal to the common humanity that binds us all — or should bind us all. We all want love. We all want to belong. As Luczak writes so beautifully in the introduction, “Here we are, coming out not only as queer and disabled but also as human beings in these pages … Stop keeping us at arm’s length. Interact with us. Make friends. Maybe you’ll fall in love. (Hey, you never know!).”

reconciliation

CW: death, descriptions of a dead body, suicide, CSA

“Really?” My sister responds when I tell her the Cedar Rapids Police mailed me the crime scene photographs. “Photos?”

She means: of our brother’s body?

I never wanted to tell her about the photos. Two years ago, when I got the police report for his arrest, she couldn’t even bear to look at the booking photograph.

A middle-aged man with a gray beard and mustache wears a black-and-white striped jail shirt and poses in front of faux wood paneling with his mouth closed and a resigned expression on his face.
Police booking photo, December 20, 2007.

My sister isn’t like me. She doesn’t want to see every document, every scrap of evidence, but the photos are different: It’s our brother’s body. Even though she attended his funeral, she never got to see it, either. It matters, seeing the body. I know, because I could never imagine him dead until I did.

“It wasn’t anything I hadn’t seen at the body farm,” I say. “But it’s different when it’s your brother.”

Should I tell her he doesn’t even look dead in most of them? That he crouched on the floor in what police call the fetal position, but which I recognize as child’s pose from my days practicing yoga? That his skin looks as soft and perfect as a baby’s? That I can make out most of the rose tattoo on his left arm?

Should I tell her I have practiced rolling off the couch the way the Medical Examiner said he did? That no matter how expert he was in falling, it’s impossible to land like that? For weeks, my hips and knees bloomed purple.

He got down in that position. He knew he was dying.

Only in the photos where police rolled him over can you see it: the putrefactive decay in his jaw, the fixed lividity in his chest where the blood, no longer pumping, pooled.

In one photo, an officer lifts my brother’s foot to document his polydactylism, meaning six toes instead of five. An identifying feature, like the twisted roots of my molars. The police have to do it, and yet, it seems mean. I glance down at my gnarled toenails — psoriasis toenails, my dermatologist called them — the ones I conceal with thick coats of red or black polish, stabbing the brush into the craters and cracks.

“I will always remember his smirky little smile,” one of my brother’s high school girlfriends told me when I interviewed her. “And his crazy toes.”

That extra toe is an atavism, a genetic throwback to the distant human past. Crazy toes.

If I were there, I would have cradled that foot. I would have squeezed to test for bone or flesh, for in polydactylism, it could be either. I don’t know what to hope for: flesh, because it would decay, leaving him with a normal skeleton; or bone, because my bones are deformed, too.

“It wasn’t really his body that got to me,” I tell my sister. “It was all the little knick-knacks in his apartment.”

The WELCOME sign atop the television:

Flat screen television with a faint green image of a NASCAR GoDaddy car on the screen and a sign atop it that reads,

Tuned, of course, to NASCAR. My brother was a “woulda been, coulda been, shoulda been” muscle car yahoo until the day he died.

Or the doilies on the end table:

Wooden end table with a box of remote controls, tissues, doilies, and some coasters for cups.

“I get it,” my sister says. “Shows how he got away with everything for so long.”

I know what she means. I always pictured him holed up in a hovel waiting to be convicted. Take the plea, his lawyer had told him. They have too much.

But it wasn’t like that. He went on living. He decorated his home. He bought laundry soap and groceries.

For my sister, it’s enraging. For me, it’s a chance to know him. I know he hung a safari-patterned bed sheet over the window. I know he drank Diet Rite. He used Hefty trash bags and Bounce dryer sheets. It’s more than I knew before. It’s nothing and everything.

“We could have reconciled,” I told my husband after he looked through the photos. “We could have reconciled, and now we can’t.”

But I do not tell my sister any of this.

White apartment door with a golden letter A on it.

I do not tell her how, every time I take my sleeping pills since viewing the photographs, I dream of knocking on his apartment door, and him answering, a Marlboro Red dangling from his lips. He knows who I am even though he hasn’t seen me in 25 years, and he reaches out his left arm around my waist, pulls me in, presses me against the wall, sticks his tongue in my mouth, licks my teeth like he always did. He doesn’t have to lock the door this time: I am all grown up.

There are other dreams, too. Dreams I do not tell my sister. I am still keeping my brother’s secrets.

He is deader than ever. He is more alive than ever. I am losing sight of the distinction. In my dreams, we can still reconcile.

An Open Letter to Kate Gale #AWP16

Dear Kate:

I can call you Kate, right? I mean, we writers are all one great, big “us,” right? And, after all, Red Hen once published a piece of mine in the Los Angeles Review.  You won’t think this letter is “sour grapes” if your own damn lit mag once published me?

I’m sorry to have to bother you, because goddamn, I can’t even imagine how fucking hard it is for a white publisher living in lonely, lonely Los Angeles when we marginalized writers get all uppity about petty issues like EVERY disability panel getting rejected or the AWP conference failing to accommodate for disabilities, or to represent its diverse membership, or even to recognize the basic humanity of people of color.

It’s awfully rude of me to ruin your transcendent experience of “being part of something bigger” by asking if pretty please, could I be part it, too? … Please accept my sincere apology.

And now that I have that out of the way …

  1. In your Huffpost piece, you wrote:* (UPDATE: The original Huffpost piece has been removed and replaced with a non-apology, but the original is cached here.)

AWP — Associated Writing Programs is a membership organization which connects writers, MFA programs and publishers, but many of those members treat it like it’s the government out to oppress us, the man, the ogre in the closet. When we get upset, we hurl insults or questions via the web. Social media and emails allow us to behave like we’re driving on a freeway. From our cars, we remain invisible. We can drive like crazy people, and we have the option of yelling threats from the safety of our offices at the organization that includes us. I have news for you people, there is no us and them. AWP is us.

No, Kate, my speaking out about disability exclusion at AWP is not like “driving on a freeway.” Some of us have NEVER DRIVEN ON A FREEWAY. Or on any road, because our disabilities preclude it. You see, I have epilepsy, and it’s not well-controlled, meaning I have no driver’s license. You lost me in the first paragraph.

Your Huffpost piece happened to publish on the same day I had to fire the only doctor I ever trusted because he opened a fancy clinic in the suburbs that is not accessible to me … because — wait for it! — SLC is designed for cars & public transit here leaves a lot to be desired. So for you to compare my speaking out about discrimination to “driving like crazy people” … well, my privileged, white, able-bodied darling, all it does is prove my point.

Also, did you seriously call us “crazy” for speaking up? As a person with bipolar disorder, I love it when people reduce me to “crazy.” It’s so empowering and inclusive. It makes me feel part of a great big joke.

You think Los Angeles makes you feel lonely and isolated now? Try living there with uncontrolled epilepsy and get back to me.

2. You also wrote:

One of the complaints lobbed at AWP is for not enough inclusion of different groups, another is for more transparency. This summer I was at a dinner and someone leaned across to me and confided, “AWP hates Native Americans.”

“Really now?” I said, “I’m going to be in Washington this summer and I’d love to discuss this with them.” I took out a pen and paper. “Who hates Indians at the office there? Is it Fenza?” I pictured David Fenza saddling up a horse, Stetson in place, going out to shoot Indians. It was an unlikely image. The woman began fumbling around; she couldn’t tell me who the Indian hater was.

So even though you were JUST griping in the first paragraph about social media sucker punches … Now you’re annoyed/amused/miffed because someone raised an issue with you in person?

WHERE, then, is the “proper” place to discuss it?

According to you, it’s the phone: “If we the people wish something could be different, one option is to call that office. A person will pick up the phone and talk to you if you do. A real live person.”

Well, isn’t that inclusive? I have trouble hearing. I can use the phone, but it’s not the easiest thing, and with my word-finding issues from Chiari, I stumble sometimes, and I tend to get flustered and stressed. 

I can’t get to the conference to discuss it with a real live person *in person* … so that’s out. (And besides, look how you handled it when someone spoke up to you in person? Did you respond in a way that encourages others to do the same?)

These days, I am often in excruciating pain. Social media makes it possible for me to speak up in a way that I haven’t been able to before, and in a medium in which I can mostly manage my disabilities.

Be honest now … What you really mean is, you don’t want people raising these issues in public. You want it on the phone so nobody has to see it. Let’s keep these complaints our little secret.

3.

You complained on the Internet about people complaining on the Internet. Hypocrite much? Is it only OK to blog, tweet, or FB-post about these issues when the author supports the status quo? Because that’s the vibe I’m getting.

4.

Now, let me address your weird little fantasy of David Fenza saddling up to shoot “Indians.” As several people have pointed out in the comments on your piece, do you honestly believe that discrimination and hate always look like that? Seriously? Do you really think that an organization is magically free of institutionalized racism because you can’t point a finger at a specific individual for saying he hates _____ (fill-in-the-blank-here)?

5.

I know you’re giddy from being part of something bigger now, but … as I like to remind my able-bodied friends: You are one head trauma away from being an epileptic like me. One car accident or infection away from losing a limb. One serious illness or injury away from losing your sight. You never know if your hearing will go. You never know if an emotional trauma will leave you with PTSD. Or if you will develop chronic pain or an autoimmune disease.

If you speak up on behalf of disabled writers, you might also be speaking up for your future self, one you have never imagined.

6.

AWP is not “us.”

For more responses to Gale, check out:

Just a little Red

Lauren Hudgins.

Debbie Reese, who poses some very important questions about Kate Gale imagining the shooting of Native Americans: “I wonder if Gale has Native friends or colleagues? I wonder if she reads Native writers? The answer to those questions may be yes, but none of them came to mind in her imagining. Instead, she went to a historical time period. That reflects the tendency to think of Native peoples as part of the past, not present.”

(re)birth defect: when vindication comes 39 years too late

I have a birth defect, but I didn’t know it until I was 39 years old.

I was waiting in an examination room for MRI results when my neurologist walked in, climbed atop the patient table without so much as a nod, flipped open a manila folder, and said, “Has anyone ever told you that you have a brain deformity?”

A few weeks earlier, when I walked into the office for my first neurologist appointment in over twenty years, I did it as an experiment. I wanted to see what happened when my mother wasn’t there anymore to tell doctors behind my back that I was putting on an Academy-Award worthy act: the migraines, the dizziness, the sudden collapses in school hallways between classes, the seizures that “didn’t look like any seizure she had ever seen,” the severe stomach pain, even my bruises from my father’s abuse. Fake, all of it, according to her, conversion disorders in medical speak. It didn’t matter that doctors told her conversion disorders are every bit as “real” as physical ailments. In her mind, conversion disorders = faking.

***

Social history interview with my mother, hours after my commitment to an adolescent psychiatric ward following a suicide attempt, 1990:

Karen says things could be better at hope, but it's not that bad. Karen is very uncomfortable talking about any physical confrontations between Karrie and Mr. Higgins. Her face and neck have become very red and she has lost much eye contact. Karen says things don't really get physical between her husband and daughter but they say very ugly things to each other. Karen says Mr. Higgins tells Karrie, if he had it to do over again, he wouldn't have ever had her.

This past year, Karrie has had numerous psychosomatic symptoms according to Karen. Karen thinks it is possible that the seizures are psychosomatic. Karrie has never received any counseling.

No doctor had ever (or yet) diagnosed my symptoms as psychosomatic, not to my face and not in my charts. My mother was forging a new medical history for me, writing it to her advantage, locking the closet so the skeletons wouldn’t fall out. Hence: Karrie never received any counseling.

She got my sister counseling. That much I can tell you.

But for a second child to need counseling? That’s the most dangerous thing of all: corroboration.

Deuteronomy 19:15 One witness shall not rise up against a man for any iniquity, or for any sin, in any sin that he sinneth: at the mouth of two witnesses, or at the mouth of three witnesses, shall the matter be established.

The first time I requested my medical records over thirteen years ago, the hospital redacted the social history interview. The second time I requested them, in 2013, someone in the St. Luke’s records department slipped in six extra pages. Just like that, my history got rewritten.

The social worker labeled my mother “the informant,” like a snitch enlisted by the cops.

According to the informant:

At this time, Karen tries to explain a bruise on Karrie's face. Karen says it probably happened when Karrie had a seizure at school and hit her face on the desk. That Saturday, Mr. Higgins was waving his hands wildly. Karrie stood up and got hit in the face. Mr. Higgins was very upset because a case worker ended up at the house and again, he felt Karrie was the one who turned him in. The case worker came the night before Karrie attempted suicide.

Suddenly, my seizures were real enough to give me a shiner. How convenient.

Or my father was swinging his arm, and I just walked into it.

But I can’t blame her for that lie. She got that lie from me.

***

24 hours before my suicide attempt:

The Department of Human Services child abuse investigator thanks my mother for the coffee the way you thank a waitress, smirking at the faux brick wallpaper, the plastic Garfield clock and matching telephone, the burnt and peeling surfaces of our counters.

“Why don’t you tell me what happened?”

My father clenches his fists, grinds his teeth. Does Ms. DHS record this on the legal pad? I see she is writing, but for all I know she’s playing tic-tac-toe or rating the coffee and wait service, taking note of the stained carpet and cheap, vinyl tablecloth.

The investigator nods my direction, as if permission is all I need—never mind my father glaring at me. I want to dump her coffee on her lap, poke her eye with her pencil. Fuck her.

“I don’t know.”

“You don’t remember?”

Suddenly, I get that tickly feeling in the arches of my feet, like when I balance on bridge rails downtown.

I do remember. I remember how my father used to say, “Kids kick you in the teeth” every time Mom took my sister and me to Super Skate or devoted whole summer afternoons to teaching us to paint plaster Strawberry Shortcake and cat figurines.

I remember how he left the pewter buckle on his belt, and when it hit my hip, the ball and socket vibrated so hard I thought they might crack. One of his buckles was engraved with the symbol for the Masonic Lodge—a capital G inside the angle of a compass—and something about the G in the center made it seem more menacing, like God himself was branding me.

Now that I am old enough, I hit back.

I steal a glance at my father, hunched over, squeezing his right forearm tight as a blood pressure cuff, his t-shirt still streaked with oil from work, his socks worn where his big toe pushes on the fabric. Sometimes it seems like he’s trying to contain something so big his body isn’t strong enough to do it.

“Maybe it was an accident,” I say, looking the investigator in the eye. “Maybe he was swinging his arm and I just walked into it.”

Not until 24 years later will I comprehend the full consequences of what I have done. I have handed my mother corroboration on a platter. I have made her lie true.

***

Dear Ms. Higgins: I am writing in response to your July 10, 2013 email in which you request that the Department of Human Services provide you with copies of any of the prior records naming you as an alleged victim of child abuse. You believe you are entitled to the records based on Iowa Public Records law. In review of the Department's data systems, there are no available records from 1990 in which you were listed as an alleged victim. If you believe the prior assessments may have been specific to sexual abuse and have been sealed as identified above, an attorney could provide guidance regarding the orders necessary through District Court to access the potential records. I hope this information is helpful.

 ***

At my first appointment as an adult at the neurologist, the receptionist slid a clipboard across the desk and directed me to fill out the intake forms.

Have you ever been physically or sexually abused? Y N

Do you suffer from depression? Y N

I froze, the pen tip hovering millimeters above the paper.  If I lied on that intake form, I would never get vindication. Any diagnosis would be fruit of the poisoned tree. If I told the truth, my appointment would go just like all the others.

Dear Ms. Dennis: Thank you for referring Karrie Higgins. Miss Higgins was seen in the Renal-Hypertension Clinic on July 23, 1999, for evaluation of polyuria. She also has a history of psychogenic seizure disorder.

Once doctors saw the word “hysterical” in my history, they knew I couldn’t possibly be sick.

Cut-outs from various medical records: Discussion and disposition: In summary, Karrie appears to have had several spells which are compatible with simple partial seizures. She seems to have had an additional spell with loss of recollection for the event which may have very well been a partial complex seizure. ... suspected hysterical seizure disorder ... In summary, Karrie appears to be a bright, active, generally well-adjusted teenager who shows no evidence of depression, anxiety, or psychosis. We have no adequate explanation for her spells from a psychological perspective ... Assessment: Karrie suffers from seizures. They have been considered functional after workup in Iowa City. However, the pattern of the seizures raises concerns about an epileptic seizure disorder. Dilantin therapy will be continued. Because of the low Dilantin level, on the one hand the patient is insistent she is taking her medications regularly, on the other hand the dose will be increased to 400 mg daily. Daily blood levels obtained. Thank you for requesting my assistance. W. S. Risk, M.D. 03/21/90

Even still, I took a gamble and told the truth.

Have you ever been physically or sexually abused? YES

Do you suffer from depression? YES

***

My mother treated my doctor visits like trials by ordeal, subjecting me to heinous and invasive tests–scopes shoved down my throat, electrical shocks to test my nerve responses, to name a few–not to find out whether I had this or that disease but to test my veracity. Every time a neurologist stuck electrodes to my head, it was a lie detector. Every time I got shoved in an MRI machine, I felt like a witch with her limbs tied behind her back, splashing down in the river.

And because my (now confirmed) temporal lobe epilepsy is notorious for evading EEG electrodes, my ailment proved the perfect validation strategy for my mother staying with my father, even though he hit his children and subjected us to sexual commentary and severe psychological abuse.

I bruised myself. And I was nuts.

***

Thanks to this medical history, I hate doctors with the fire of a thousand suns and usually only go when I’m desperate.

That day in 2014, though, I needed to know if I could rewrite my history. As I sat in that examination room with the words “Has anyone ever told you that you have a brain deformity?” hanging in the air, I thought I had broken free from my permanent record. I was born again.

Literally born again, discovering a birth defect at the age of 39.

Something nobody could accuse me of faking.

An MRI scan of the author from the side of her head, revealing how her cerebellum is herniating through the foramen magnum.

MRI scan of the author's brain, from the side of her face. The cerebellum is falling through the foramen magnum. The MRi image says "made in Osirix," which is a program for exporting MRIs from the CDs provided as records.
Another MRI of my head that shows the Chiari more clearly. It says “Not for Medical Usage” because I exported it from the CD the radiologist gave me using the free Osirix program, which creates the watermark.

The neurologist sat down next to me and pointed to my cerebellum in the MRI images. “Do you see how it is descending through the foramen magnum?” She said. “That’s Chiari Malformation. It isn’t something that happened to you. You were born with it.”

Like most neurologists, she didn’t take time to explain the implications. I didn’t know until later how many of my lifelong symptoms and issues were explained by Chiari:

  • headaches
  • dizziness
  • collapsing
  • word-finding issues
  • buzzing and clicking in my ears
  • balance and coordination problems at times

As for my seizures, which the Chiari doesn’t explain, my neurologist called them “textbook temporal lobe.” Basically, I won the neurological lottery.

I texted my mother with the results right away. The MRI showed a defect in my brain, I said. I left it at that. I guess I half-lied because I hoped she would take it as proof of my seizures.

But her response never came. Her apology never came.

***

Last week, my aunt suffered a grand mal seizure, and she has since been prescribed anti-seizure medications. It’s awful, and I wish I lived nearer to help her transition into the world of epilepsy.

She’s not the only a relative with seizures. There was my cousin Marcia, who careened off an interstate in 2006 thanks to a seizure. She died on impact. Her medications failed her.

Once, after another cousin got diagnosed, my father–with whom I went no-contact in the 90s–somehow obtained my number and called to half-ass apologize for not believing me back then. I hung up and promptly called AT &T to change my number. Too little, too late. And anyway, as soon as the alcohol wore off, I knew he’d change his story. Classic drunk bait-and-switch.

And yet, after my aunt’s seizure, I couldn’t help but hope for an apology from my mother. After all, seizure threshold is genetic.

But the text never came. The call never came.

Because even when you have an MRI scan.

Even when the doctor calls your epilepsy “textbook.”

Even when all the evidence points to you telling the truth.

You are still a liar.

That fucking chart follows you everywhere. Even when you are born again.

I got 99 problems but AWP ain’t 1

Today, I am going to talk about something I don’t talk about publicly in great detail most of the time: being a writer with multiple invisible disabilities and the alienation, exclusion, and profound loneliness I feel because of it. I don’t like to air my grievances because I generally do not trust able-bodied people with this information, not even many of my closest friends. If that hurts anyone’s feelings, I am sorrynotsorry. It is not meant as a criticism or attack on anyone. It comes from a lifetime of feeling left out and misunderstood. It is why I understand the righteous anger of others who experience discrimination.  I know what it feels like when people gaslight you. It feels like shit. It feels like you landed on some cold and alien planet that doesn’t want to share its air.

My experiences as a person with epilepsy, bipolar, PTSD, and Chiari are usually met with neuro-typical ‘splaining. My experiences as someone with hearing impairment are usually met with patronizing “advice” to get a cheap hearing aid at Costco. I have learned it is best to keep my mouth shut & my head down and not make “problems” for everyone else. It’s not even worth it to ask for accommodations anymore (read my experiences with that quagmire below), because the kinds of accommodations I need don’t make sense to people, and so they either shame me for asking or neurotypical ‘splain why I don’t really need them. And this in the context of a supposedly “progressive” community of writers, artists, and academics.

I live and work in an isolation bubble, doing the best I can with what I’ve got. Somehow, I have managed to win some awards and wind up with a notable in Best American Essays 2014 along the way. So I am not some dilettante who’s just bitter about lit-mag rejections. I am out there doing the work and getting published. So do not even think of coming at me with some “sour grapes” accusations. I ain’t having it.

Click this link to one of my pieces (TW: sexual abuse). Go read that comment from “Coco.” It’s pretty typical of the bullshit I put up with because my brain is not wired like most people’s. According to the anonymous Ms. Coco, I should be writing fiction. FUCK THAT. I will write fiction if I WANT to write fiction. When that comment popped up on the site, I wondered why it was allowed there at all. Would a similarly overt racist comment have been allowed? I hope not. So why an ableist one? (And psst … I already know I should stay out of the comments.)

And if you want to tell me that my autobiographical experiences aren’t “real,” well, allow me to expand your vocabulary:

neurotypical privilege

screen grab from the neurotypical privilege Tumblr: "NT privilege is getting to define what qualifies as "reality."

Then there was

this

and this.

And the time I was teaching college composition online, and the department switched to a new scheduling system that would have forced me to conduct late-night live seminars, and late nights = seizure trigger. I disclosed my disability to my boss for the first time, and I got lectured about not disclosing until I could “get something out of it” and told to “plea” with my colleagues for a daytime slot. I schooled the motherfucker in ADA. Instead of accommodating me and moving on, he accommodated me and made my work life a living hell until I resigned.

When I prepared to file an EEOC complaint, I was STRONGLY ADVISED it would show up on background checks FOREVER, and I would never work again, so I didn’t file it. Nice little system there, huh? Oh, and guess what? I haven’t had much opportunity to work again, anyway. I taught at another school after that and got laid off for daring to get sick from yet another supposedly “ADA-covered condition.”

Or all the times I’ve been labeled “difficult” or “silly” for NEEDING a hotel within walking distance of AWP (or whatever event) because I cannot drive and DO NOT ride public transit in an unfamiliar city because a seizure in that context could get me dragged into a police station or worse. Yep. I’ve been interrogated by cops when I was post-ictal (wanna guess how police officers handle someone in that state, not realizing they CAN’T answer?) Not arrested, thank goodness, but I know epileptics who have been … and I know of some who have died as a result (though the case in that link clearly intersects with race, too, but hey, disability doesn’t exist in a vacuum; we are people).

So when you tell me I am being “silly,” you can fuck off. Fuck. Right. Off.

Or when lit mags say they are looking for diversity and don’t solicit submissions from people with disabilities.

All those times I wanted to attend a writing retreat, but it couldn’t accommodate my epilepsy. Maybe it only had bathtubs, and bathtubs = drowning if I have a seizure. Maybe it boasted mandatory events at times that would trigger seizures. Maybe it required me to transport myself to a highly secluded area without any accommodation for the fact that I cannot drive due to my seizures. Oh, this happens all the time. All the time.

And even if I could go, I don’t trust able people to respect my wishes or my boundaries once I am there. I’ve been down that road too many times, burned too many times. What if I have a seizure and “ruin” it for everyone or they make jokes like professors in my MFA program did? What if they call an ambulance and get me in thousands of dollars debt for an ER visit, even though they promised not to because it isn’t necessary & I gave them instructions in case of seizure? Want to guess how much money I have paid to hospitals for unnecessary ER visits?

And then I don’t get retreats and residencies on my CV, and people say: You’re not trying.

Or when writers post about their book tours, and I think, shit, how the fuck am I going to do that if I ever finally publish this book burning inside me? Stuff they don’t even see as an issue, really. Drive (drive! I’ve never done it!) up to some readings in a nearby town or suburb or whatever. Hop on a plane. Stay out late at literary events and parties. No big deal.

The times I have walked into lecture halls and FROZEN from anxiety because no matter where I sit, I am a problem: If I sit up front and have a seizure, I disrupt the whole thing and ruin it; If I sit in the back, I cannot hear.

Or how about June 2003: I am seated at a coffee shop window in Marina Del Rey, California, scoping out my MFA classmates as they arrive at the Marriott for “our” graduation. I make sure they are all inside before sneaking back to my room, retrieving my suitcase, and getting the hell out of dodge. I don’t want to ruin everything by having a seizure, so I miss my own graduation.

Yep. I didn’t go to my own fucking MFA graduation because I DID NOT FEEL WELCOME.

But I keep my mouth shut most of the time. It’s better that way. Trust me.

So why am I speaking up now?

On Friday, after I learned that AWP rejected every single disability panel proposal for the 2016 conference in Los Angeles, it hit me like a sucker punch. For the first time ever, I had been invited to an AWP panel, and it happened to be about invisible disabilities. Even though I have never been able to attend before thanks to the logistical and accommodations nightmares my epilepsy and other disabilities create, I felt the incredible lightness of hope. This particular year, my husband might have even been able to drive us there and go with me, which infinitely increases my sense of safety. (He’s a writer, too.) It felt like a confluence. Like things were coming together. Being invited made me feel part of something for the first time in a VERY long time.

And then it got rejected.

OK, that’s fine. Rejection is part of the game. But it wasn’t just my panel that got rejected. Every single disability panel got a

the word "nope" in white text on a black background

(nope)

Every single one.

Sure, they gave us a “disability caucus,” which translates to a “networking event” where we hang out with our own kind and don’t make problems for all the able people … but not a panel. NOT ONE. We were not worthy of even ONE panel. I have to think they designed it this way. They WANT us isolated. They WANT us contained. They WANT us to keep our problems to ourselves. Otherwise, they might have to actually change some things. Gasp.

This setup reproduces the exact same conditions in which we already work and live. How convenient for everyone.

A rep from AWP “explained” the decision this way:

screen grab from Facebook post on the public AWP page: "As someone with a disability who works at AWP (I read submissions to The Writer's Chronicle), my fingers are *always* crossed that we received proposals from writers with disabilities. Every time we post a call for proposal submissions, we ask for a range, and certainly for disability-focused panels. As we've always said in our calls for submissions, our panels are only as diverse as the submissions."

But there were disability panel proposals. Again, I was part of one. I have also talked to other writers on Twitter whose disability panels were rejected:

(Image is screenshot of AWP panel proposal for “writing ethically about psychiatric disability.”)

The excuse smacks of lit mag editors who claim, when charged with sexism, that they simply don’t get submissions from women. We all know it’s total bullshit. Come on.

And, anyway, true or not, the excuse wreaks of ableism:

1. IF AWP isn’t getting many proposals from writers with disabilities, they need to find out WHY. Did they ever stop to think that writers with disabilities feel unwelcome? That maybe it’s really fucking hard to get to these events with obstacles like under- and un-employment, astronomical medical costs, logistical problems like transportation, chronic pain, safety risks, medications, etc., and a proven history at AWP of not accommodating in meaningful ways? (Ask around. I am not going to do the work for you.) Did AWP ever think that maybe, just maybe, the conference is not very accessible, and THAT is why they didn’t get many proposals? Why no outreach?

2.  Look at the winning panels, and you can see right through this little numbers game (lie). There’s a panel on teaching the elderly at the Y and elder care facilities. Actually, that’s really cool. I love it. But … um, am I supposed to believe that AWP got a ZILLION panel proposals on teaching the elderly? Because by AWP’s own logic, that’s the ONLY way you will get a panel accepted. Remember, the WHOLE reason they didn’t accept a disability panel is because … they didn’t get that many. Hm. I’m having a REALLY hard time believing they were INUNDATED with proposals on teaching the elderly (an admittedly cool panel, but that’s not my point).

3.If AWP is “itching” for disability proposals, why did they reject every last one? Actions speak louder than false declarations of ally-ship.

4. Minority groups deserve representation, too.

5. AWP is NOT “only as diverse as its proposals.” Funny, even though my panel got rejected, I am still here and still disabled and still a writer and still a member of AWP.

They think they can pull a goddamned David Copperfield and vanish the disability problem just by rejecting our panels?

Black and white photo of David Copperfield from probably the early 80s. He is in a darkly lit room. His thick hair is falling over his eyes, which stare intently at the viewer. His right hand is raised and open in a position suggesting he is about to cast a spell on the viewer.

Publicity photo of David Copperfield from the television special The Magic of ABC Starring David Copperfield.

Imagine if an MFA program rejected every single applicant with a disability on the basis that only a “few” applied. OUTRAGE! ADA violation! And yet, AWP rejects every single disability panel with impunity. How is this acceptable for an organization that purports to represent writers and writing programs?

And then there is this:

Association of Writers & Writing Programs Facebook page post: In reviewing the applications of this season's Writer to Writer mentees, we are seeing a deep need for mentors who write from the perspective of someone with a disability. If you'd like to serve as a mentor, please follow the link to learn more. Applications are welcome through August 1st.
screenshot of a Facebook post from AWP seeking writing mentors who identify as having a disability

Wait, AWP wants us to volunteer as mentors, but they don’t think we are worthy of a panel?

Are they kidding me with this hypocritical, phoney baloney “we care” nonsense?

I have read some comments alleging that disability panels lack “broad appeal.” Oh, really? Re-read that proposal I posted up there about psychiatric disabilities. Tell me it’s a yawner with a straight face. And why is it that disability panels must appeal to everyone? Other demographics don’t seem to be burdened with that requirement.

There’s a panel on mother writers. I’m not a mother and don’t want to be a mother, but it would be ludicrous (and downright shitty) for me to say that mothers shouldn’t have a panel. OF COURSE mothers should have a panel. They face a whole host of challenges I could never understand, and it’s an important issue. (Psst, and I BETCHA there are even some mothers who have disabilities! Yep. Contrary to popular belief, we people with disabilities can and do reproduce.)

Every year, my friends peruse the panel descriptions and complain about the tough choices they will be forced to make. Must be nice, I think, having that problem. I am so far removed from that luxury, trying to figure out some way to get this epileptic body there to participate meaningfully (and SAFELY). Honestly, the AWP might as well take place on Pluto.

Well, AWP did do me one solid: I know one conference I don’t have to work out logistics to attend. I know where I’m not welcome.

I got 99 problems, but AWP ain’t 1.

 

 

 

UPDATE: I’m not the only person who is angry at AWP for its treatment of members with disabilities: http://stephenkuusisto.com/2015/08/01/the-awp-and-disability-inclusion/

(Note: Other writers with disabilities may have vastly different opinions and experiences. Please respect that diversity if you jump into the conversation. Also, this post in NO WAY is an exhaustive exploration of my experiences or issues with accommodations.)

I never did a thing to hurt you: abusers and intentions part two

If there is one thing I learned from the police transcript of a taped phone call between my brother and his final victim, it is how expertly abusers use their intentions to manipulate people:

Greg: Honey, I have never done a thing in my life to hurt you. You ought to know better than that. Come on now, I'm not denying nothing because I didn't do a thing to hurt you, sw, sweetie.

The first time I read the transcript, I thought the jury could go either way (had my brother not died before the trial). His confession didn’t seem as cut-and-dry as the detective made it out to be on the affidavit for arrest.

But when I showed it to my husband, he said, “He was going down.” To him, it was as airtight as a guilty plea.

I couldn’t see it then, but I was still falling under my brother’s spell:

Greg: Oh my God, you're accusing me of having sexual stuff with you. I can't believe this. I, I'm just totally flabbergasted man. You're making me out to be this monster, and I'm not. Oh my God, You make me out to be a really bad person, and I didn't do a thing. I really didn't. I'm not trying to screw your head up. I want, I think, I love you. Don't you know that I love you? NAME REDACTED: You're greg: Don't you believe that? NAME REDACTED: You're not a monster. GREG: You know, you don't believe that I love you? Huh, for a minute?

I was still internalizing his manipulations, still thinking: But he loved me. He’s no monster. He didn’t want to screw up my head.

Two years later, after getting over the initial shock and re-reading the transcript, I see it plain as day, how the police worked during the phone call to actively slice through intentions straight to actions:

As you could hear in the tape at first he denies that any of that ever occurred, that it just wasn't true. She continued to speak to him about needing him to be truthful, he kept mentioning things about he didn't hurt her and I was writing notes to her. I would tell her no you didn't hurt me, but what you did was wrong. Again in the first part of the tape he denied anything happening then he went to well, they were wrestling and she misunderstood which of course she denied, and said no, you knew what was going on. He then went to the next phase where he said if something happened he is sorry and he would say he is sorry about it, and she continued to tell him all she wanted was the truth ...

The police officer slipped the girl notes to say things such as:

I'm not talking about hurting me. We're talking about you touching me.

He was giving her a Teflon shield against my brother’s excuses and intentions. See how she shifts the focus from her pain to his actions? We are talking about you–not me–but you.

When read in that light, the transcript revealed to me how I had been manipulated, too. Even as I have been telling my story and taking steps to heal, I have still been locked in the original script of what my brother “intended.” Re-reading the transcript now, I see his confession for what it is, and I believe his case was as close to a slam dunk as prosecutors could ever hope to get in a sex abuse charge.

As the conversation unfolds, you can witness my brother progressing through stages, almost as if he’s in therapy: denying a secret ever existed, attempting to manipulate memories (“You have any doubts. We were in front of the TV.”), to admitting something happened but not the way the girl thinks, to finally breaking down and confessing, but only while manipulating her to never tell anyone.

Of course, it’s upsetting to witness the victim denying her own pain to cut through her abuser’s intentions, but it speaks volumes about the mindset of someone who would molest a child that this is what victims and investigators have to do. It speaks volumes, too, about the ways in which our culture indulges abusers by focusing on their intentions while forcing survivors into a kind of self-abnegation.

And yet, it also points a way forward: Abusers should be judged on what they did. Not on what they intended. Not on how bad they feel. Not on how sorry they are. Only on what they did.

Of course, remorse affects rehabilitation potential and factors into actuarial recidivism risk assessments for sex offender registration. And in court, defense attorneys will attempt to emphasize intention over action, painting victims as “mis-perceiving” what was done to them. That’s part of having an adversarial system wherein the defense has a duty to fight for acquittal.

But let’s shift the focus away from courtroom tactics and focus on friends and family of survivors, who rather than lending support, regularly and routinely play “defense attorney” by shifting conversations to offender intentions or remorse. Whether or to what degree trial courts and correctional outcomes focus on intention is irrelevant here.

Human beings are not courts of law.

Human beings are not courts of law.

Human beings are not courts of law.

Every single time we make an abuse allegation about intentions instead of actions, we are slathering the offender in Teflon. Do you really believe that’s who deserves to be shielded?

no visible trauma: on invisible disabilities and MFA programs

My second residency in my MFA program, I had a seizure smack-dab in the middle of workshop, right in front of my future new mentor. I don’t know what happened afterward, but I remember thinking I had blown it, that from now on, I would be that girl.

The main reason I had applied to a low-residency program was to avoid seizures getting in the way of my studies. During my undergrad days, I had them all the time. Between poor nutrition due to poverty, lack of sleep due to working many jobs, squeezing in homework at night, constant stress, fluorescent lighting in almost every classroom, and lack of access to neurological care, I didn’t stand a chance. With a low-residency program, I could set my own hours (except during residencies), never miss class, and have seizures under the radar. Nobody would have to know.

I never counted on having one during residency.

The Los Angeles Fire Department EMT Emergency Medical Service Report:

Blue and white form with a pink border that says Los Angeles Fire Department Emergency Medical Service Report at the top in bold blue text. Dated 06/23/2001, it states my name and address and that I had a seizure. "Equal grips, warm dry good skin color. No visible trauma"

I am struck by the words, “no visible trauma.” It sums up the terror and the problem of epilepsy in three little words: my disability is invisible. During seizures, it becomes visible. Other times, I can “pass” for “normal.”

On the one hand, it’s an advantage because I can slip into the world of “able” people without notice.

On the other hand, slipping into that world means people fail to recognize why I come off a little weird: What do you mean you never learned to drive? Come on, don’t be a party pooper! Stay out all night! Never mind that lack of sleep is a trigger.

Or why I require accommodations: I’m sorry, but it is not fair to the other employees if we schedule you for daytime shifts only. Never mind the unfairness of failing to accomodate. The only fairness that counts is fairness to able people.

So when that seizure happened during workshop, it was game over. I had been outed.

Two years later–on the exact same date, according to my records–it happened again, this time during a senior reading. All I remember of that night is a jumbled mix of images, like individual frames scissored out of a movie reel. I remember being lifted into an ambulance on a gurney and my friend climbing in with me. I remember the paramedic prepping me for a shot–probably Phenobarbital sodium solution or diazepam because I was in & out–and my friend saying, “No.” That’s how we became best friends. I don’t know if the paramedic stuck me, anyway. I don’t remember anything else from that night in the ER. My next memory is conking out in my hotel room alone, afraid of having another seizure.

A few days later, a professor in the program joked that I seemed to only have seizures around one particular professor. “You better stay away from him,” she said. “He makes you have seizures.”

The insinuation was obvious: I had some sort of hysterical crush (that would be a nope). Or maybe I was faking.

I wanted to tell her no. Stress, late nights, not eating right during residencies: all of those things trigger seizures. And besides, I had them at home, too.

Instead, I laughed, pretending to her joke was funny. I was trying to “pass” again, I guess.

Her comment shocked me, but it shouldn’t have.

At the previous residency, I submitted a piece about my epilepsy for critique, and the responses went like this:

People put the spoon in your mouth because they are trying to help.

You’re too angry.

Don’t you understand why people call ambulances?

Why can’t you understand that seizures scare people?

When people pet your hair, they are trying to comfort you. You shouldn’t feel violated.

Notice none of these comments address the actual writing. Notice the underlying assumption in all of them is that my point of view is not valid; therefore, my essay is not valid. If I want to write memoir, I have got to take care not to challenge neurotypical people.

Never mind that neurotypical people do not bear the same obligation to me.

The critique went on and on and on, and the workshop instructor never stepped in to stop it.

Finally, a friend intervened. “Did you learn something about epilepsy from this piece?” She asked.

Everyone nodded.

“Did you learn what it is like from her point of view?”

They nodded again.

Squeamish silence, followed by another student chiming in, the one who thought I was unfair about spoons getting stuck in my mouth: “But I would be more open to learning it if she would take into account my feelings.”

Back then, I lacked language for what was happening, but now I know what to call it: ableism. And this happened in a progressive MFA program that not only touts its commitment to social justice, but also advertises it as the main thrust of the program.

In other words, even “progressives,” even “liberals,” even people committed to social justice, can be biased and bigoted.

I wish I had possessed the language back then to call my peers out on their bullshit, but I didn’t. All I had was this sick feeling in the pit of my stomach. They telegraphed their message loud & clear: I had to “pass” and “represent” people with disabilities at the same time, like some kind of quantum voodoo, existing in all possible states at once.

Thanks to my friend intervening, I felt empowered to shrug off the ableist critiques. I revised that essay, but on my own terms. And then I published it. You can read it right here: State Lines.

What I’m saying here is that allies matter–whether it be against ableism, homophobia, racism, transphobia, sexism, or any number of oppressive -isms. Speaking up matters. Do it.

Restorative Justice and Sexual Harm

For readers who responded to my husband’s story, here is his first report about his experience at the National Association of Community & Restorative Justice Conference 2015, where he went to continue promoting his message of accountability. At the conference, he asked tough questions, delivered a presentation about power, race, and class in Restorative Justice, and met with many other survivors of childhood sexual abuse.

Restorative Discourse

This week I attended the 5th National Conference on Restorative Justice held in Ft. Lauderdale Florida. I was there to speak on challenges or problems in the Restorative movement that may result in creating, extending, or concealing harms rather than creating justice.

The conference was opened by Mara Schiff of Florida Atlantic University who introduced the first plenary speaker, Dominic Barter. Internationally renowned for his implementation of Restorative Justice in the Brazilian criminal justice system, Barter trains practitioners in facilitating the processes that have become associated with Restorative Justice. As he spoke about the benefits of Restorative processes Barter brought up that as rules are created for Restorative Justice and Restorative Practices, the process of creating the rules can block or exclude people who don’t accept, can’t meet, or who culturally engage in different manners than those who are establishing and preparing the “restorative” process. These comments opened the door…

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