Last week, I was talking to a friend about dropping out of my PHD program before I even began. “Honestly, I think it’s the best thing,” I said. “I would probably be in bipolar crisis if I had done it.”
My friend nodded. She’s disabled, too. She gets it. We both earned Masters Degrees. We both got sick, faced hospitalizations, survived manic episodes and more — all while trying like hell to churn out good work and not scare off our classmates and professors.
When I said, “I would probably be in bipolar crisis,” I didn’t mean I couldn’t do a PHD program. I meant PHD culture is toxic to people with disabilities. Before I delayed my admission (and later dropped out), I had pursued accommodations for my assistantship. At one point, Human Resources point-blank asked me how I ever expected to work in academia given my limitations & needs. When I said I had no intention of ever pursuing a career in academia, they were relieved. “You are much more likely to get the accommodations that way,” I was told.
As a novelist, attorney, freelance writer, and former law professor, Dr. Pryal became a major voice for disability rights in higher education after she took a sabbatical from teaching and spoke up about her mental illness in the Chronicle of Higher Education:
But I feel anxiety for another reason as well. I have a psychiatric disability—that is, a mental illness—that I’ve kept secret since I was diagnosed at the age of 21. So when the teaching evaluation called me “emotionally eratic,” I feared that my supervisors would believe the words. And, despite all evidence to the contrary, I feared that Mr. Eratic might be right.
Mostly I feared that everyone at work would learn about my secret disability, and that I would get fired because of it. I feared I would be seen as unreasonable, irrational, and therefore unable to do the work required of a professor. Because of my disability, my career would be over.
Much of Life of the Mind Interrupted draws from her columns in the Chronicle, as well as other essays, with updates and expansions. Covering everything from the tenuous, terrifying tightrope walk of adjuncting-while-disabled to practical advice for classroom accessibility, Dr. Pryal not only dismantles academic ableism; she makes the case for how easy it is to be accessible — and how it benefits everyone.
In “Disclosure Blues: Should You Tell Colleagues About Your Mental Illness?,” she writes about Elyn Saks, a professor at University of Southern California who gave a TED talk about disclosing her schizophrenia:
Sak’s advice is written from the position of a tenured professor, with great academic privilege, the most important one being near-bulletproof job security. But there are other privileges that come with the type of job she holds. For example, she gives the following advice to professors with mental illness: “Schedule your courses carefully. If your meds make you tired in the morning, try not to teach morning classes. Try to choose courses you like to teach — you will do a better job and feel less stressed.” As any contingent professor knows, we often choose neither our courses nor our class meeting times.
The first time I sought a scheduling accommodation as an adjunct, I lost my job. I was teaching online, and each class included a live weekly webinar. I always selected sections with daytime or early evening webinars: late nights = seizures. When the department overhauled the scheduling system, instructors lost control over seminar times, and I was forced to seek accommodation.
My department’s response? Tell fellow faculty about my epilepsy, beg for a daytime seminar, and hope for the best.
“That is not how accommodations work,” I told my department director. “I shouldn’t have to expose my private medical information to colleagues.”
Epilepsy comes with serious stigma: People think you are devious, crafty, lazy, dishonest, and dangerous. They doubt your intelligence, too (never mind intelligence is itself an ableist measure.) I’ve been called “idiot” or the r-word a lot when people find out about my seizures.
My director fired back. “You never told me you were disabled before.”
I wasn’t fired. Oh no, they knew enough not to outright can me. Instead, they withheld information, resources, and student contact lists, making it impossible to fulfill my duties. If I emailed my director with a question, he would critique my email instead of answering. “Learn how to write shorter emails,” he quipped once, after I sent him two paragraphs detailing a complex & urgent issue with a student. He was calling into question my competence, just as I had feared.
The saddest thing? None of it had to happen. The original scheduling process was accessible: We chose our times and that was that. No scheduling accommodations needed.
And that is a key point of Dr. Pryal’s book: accessibility and accommodations are not the same thing:
But the accommodations model requires us to disclose our disabilities, it requires us to explain, to give up secrets we might not want to share. The accommodations model depends on invasions of privacy to work.
Accessibility, alternatively, means that a space is always, 100% of the time, welcoming to people with disabilities. Accessibility means that ‘accommodations’ are integrated into a space and are not particularized to an individual–but rather created for our society as a whole. We, as a society, are disabled people. Therefore we, as a society, build spaces and procedures for disabled people.
It really is that simple.
And she shows how simple it can be with her “universal design alternative to the whiteboard,” in which she projects a blank document from her laptop onto a projection screen and writes a daily “class record.” Each week, she saves the file and emails to the entire class. “And my students really got into it,” she writes. “‘Put that on the class record!’ they would request during class, when I said something they found particularly helpful.” This was all in response to a student who couldn’t see the whiteboard and requested lecture notes in PDF. Accessibility benefits everyone. No barriers. No documentation. No invasion of privacy.
That last bit is key. Remember I mentioned my PHD assistantship accommodations? To get those, I not only had to declare I wasn’t pursuing an academic career; I had to turn over medical records and discuss — at length — my mobility limitations, mobility aids, and medication side effects. The medication side effects turned out to be more important than my actual disabilities: Side effects are easier to understand, easier to “prove,” and easier to accommodate. It was awkward and invasive. I felt like I was talking to a medical assistant, not my HR department.
As Dr. Pryal writes, “we cannot ignore how race, gender, socioeconomic, and other kinds of privilege affect how people with disabilities live and work.” In “Shattering the Madness Monolith,” she shares stories of academics with diverse identities. One of them, speaking under the pseudonym “Annie,” reveals how she struggled to receive medical treatment as a Chinese-American woman, with one doctor even telling her “it was normal for Asian women to be anxious and stressed out, and anxiety was causing my abdominal pain.”
Probably my favorite essay is “Breaking the Mad Genius Myth,” about Kurt Cobain and the romanticization of mental illness as “genius.” Of all the myths about mental illness, this one has done me the most harm: Bipolar robs me of credit for all my hard work. Don’t ever take medication, people will say. It will ruin your writing. They are wrong. As Dr. Pryal argues, creative people are more productive when their psychiatric symptoms are under control. For years, I bought into the myth, though. I believed medications dulled my shine. Now I know better, but I still have to listen to people deny my hard work and praise my epilepsy & bipolar as “genius.” At the same time, literary colleagues have outright accused me of exaggerating my experiences because they perceive me as “that unreliable crazy person.” That’s the problem with “mad genius.” It’s inherently “unreasonable,” as Dr. Pryal points out. The whole “genius” of it lies in being beyond “normal” reason.
While the myth of the “mad genius” romanticizes mental illness, the taboo around suicide & suicidal ideation is strong as ever. As Dr. Pryal writes in stunningly honest, heartbreaking prose, “Suicide didn’t almost kill me. The taboo did.” Taboos make us keep secrets. Taboos keep us from seeking help. Taboos keep us from asking for what we need.
Now imagine your career depends on living the “life of the mind” and you’re suicidal.
Ultimately, the reasons I couldn’t do my PHD program came down to the smallest things: I needed Paratransit; it’s not included in the student bus pass and too expensive. I needed a part-time load; part-time is not allowed. Other things, too. Along the way, as I delayed my decision, more than one doctor told me, “I’m worried about you doing a PHD.” One went so far as to say, “Don’t do it.”
“It will throw you into bipolar crisis,” she said. “I see it all the time.”
Which is why I am recommending Life of the Mind Interrupted to everyone.
The techs blasted Prince into my headphones. In every MRI before — and I have had a lot of MRIs — I dozed off, hypnotized by the clang clang clang and bang bang bang. I slid into the tube expecting a nap. Instead, I panicked. Sometime during the Purple Rain guitar solo, I tried to lift my head. My neck burned like a beheading with a blade of fire. I am paralyzed, I thought. I can’t move my neck. I can’t move my neck. I can’t move my neck.
I kicked my feet. Screamed: GET ME OUT OF HERE. GET ME OUT OF HERE.
I knew. My spinal cord knew. All this time, it had been transmitting coded messages in the strange movements of my eyes, like a political prisoner paraded out on TV. Classified intelligence about a biological weapon implanted in my backbone. My own body turned traitor. This is not a democracy anymore. You do not get to choose. You can’t move your neck. You can’t move your neck.
“Winter Kills” is the soundtrack to the first time I saw the first syrinx in my spinal cord.
Alone, at home, MRI disc popped into my MacBook:
I knew what that hole in my spinal cord was. If you have Chiari like I do, you know.
On TV: The Americans. “Winter Kills” in the background as KGB agent Elizabeth Jennings rifles through her friend Young Hee’s house for the access code to a biological weapon.
“The Day After” episode, when the Jennings family watches a made-for-TV movie about nuclear apocalypse, and they know: they are living, breathing weapons of mass destruction. They are quickening the End of the World.
“I was thinking about not telling the Center about this,” their contact in the bioweapons lab says. “I’d like to make the right decision… Nobody needs this. I don’t trust us with it.”
The Day After was a real movie. I watched it as a kid. I lived in terror of nuclear bombs because, as we were told in school, Cedar Rapids was a prime target:
Cedar Rapids, Iowa: land of Rockwell Collins, makers of military aircraft communications and space shuttle parts; Duane Arnold nuclear plant; the bread basket of the nation. The Russians are going to nuke us. The Russians are going to nuke us. The Russians are going to nuke us.Nuclear winter is coming. They drilled it into our heads. The first Wednesday of every month: civil defense sirens. Take cover.
Same as the tornado siren. I started to confuse tornadoes with nukes. Tornado shelters for bomb shelters. Tornado drills at school with duck and cover.
Later, I thought it was all a lie, but it wasn’t. On maps of a 500-warhead scenario: a triangle marking my childhood industrial wasteland in a flyover state nobody cares exists.
I am caught in a time loop: Comey canned, the president laughing in the Oval Office with the Russians who conspired to tear at us, searching for weaker seams, hacking intel about our election, turning our own democratic bodies against us.
Last May, one month after signing a lease on a new apartment in a new state, my neurologist ordered a c-spine MRI after she witnessed drastic changes in my gait.
Ataxia, she called it. From the Greek: a/”without” + taxia/”order.”
Without order. Disordered.
I showed her my balance test results, ordered by an ENT when he saw how I walked. Diagnosis: abnormal smooth pursuit.
“Follow my finger with your eyes,” she said.
I did as told.
“Yep. Not normal.”
The month before that: seizures when a new epilepsy med failed. Banged my head hard. “They weren’t like my normal seizures,” I told her. “No aura. Just BAM, down.”
I showed her my dental x-rays, tooth 19 shoved out of place. Told her we got me plastic dinosaur dishes because:
We expected another traumatic brain injury. Instead, the MRI found this:
My first syrinx, a hole in my spinal cord. Diagnosis: syringomyelia.
These days, I walk like I am drunk. People think I am drunk. If a cop wanted me to follow his finger with my eyes, he would think I was drunk, too.
My shoulders, scapula, and neck burn. I wake up panicked the bed is on fire. My spinal cord is a lit fuse, tick tick tick to paralysis.
Which at first made Body Cards a scary proposition. I am never not thinking about my body. I have to breakdown the kinetics of every step, like a Muybridge series in my mind.
But — full disclosure — I know Courtney from my MFA program in creative writing. I love her art. I trust her heart. I knew I was in good hands when she sent me the cards to try (also full disclosure: I loved them so much that after I left the accompanying book at a hotel, I bought a second deck for myself!).
For Body Cards, Courtney gleans wisdom from years of working with clients as a massage therapist and Reiki Master. Her poetic imagination and deep connection to the body emanate from her colorful collages. The cards are large with rounded corners, printed on a slick, high-quality card stock that is durable and easy to shuffle. Holding them, I sense the care that went into their design.
As Courtney writes in the book, the cards “draw upon the idea that the human body is not a complex organism complete with the powerful ability to heal, but also a tremendous resource for us in terms of understanding our very lives.”
“Your body is your map your muse and your medicine,” she writes.
Cerebrospinal fluid is 99% water, I thought, when I flipped opened the book and discovered those words. Water extinguishes fire. Let’s see what these cards can do.
I. (No Spread – A test of sorts.)
For my first reading, I went straight to the cerebellum card. I wanted to see what it brought up, how I connected to it. I have Chiari malformation, a neural tube birth defect that means my skull is too small for my cerebellum, can’t hold it in. My cerebellum has nowhere to go but down down down through the foramen magnum, spilling into my spinal canal. The compression makes me dizzy, makes me stumble, sends me into word-finding spirals, gives me pressure headaches at the back of my skull.
It gave me syringomyelia, too, clogging the flow of my cerebrospinal fluid until it formed little whirlpools inside my spinal cord.
If I could connect to this card, I could connect to the whole deck.
From the book:
Without a well-functioning cerebellum, we could struggle with our balance and coordination … On a metaphorical level, embracing grace means to embrace beauty, love, and forgiveness. What in your life is in need of this humble cerebellum energy?
When the cerebellum card waltzed into your reading, it’s time to seek out grace. First take stock of your actions toward yourself and others. What could use some softening, some lightness, some love?
The cerebellum card asks you to forgive yourself for the times in which you have been a little clumsy.
I forgive my childhood neurologists 100 times a day for never catching my birth defect even though they did a million MRIs for my epilepsy. For calling me hysterical. Which is to say: I haven’t really forgiven, because I have to keep doing it.
Abnormal smooth pursuit of forgiveness.
How do I forgive a whole city? I came here for a fresh start, an education, a chance to show my childhood neurologists they lacked imagination when they said I may lack realism in my aspirations. Every path out of my apartment complex ends like this:
Abnormal smooth pursuit of a way to reach the cafes, the bookstores, the library, the health food shop: people. Humanity.
Every morning, I circle the hospital next door.
two laps=one hour
My walking cane taps taps taps. From a drone, I am the minute hand tick tick tick.
I am restless as a clock face.
The first thing I said as the moving truck pulled into my new neighborhood: “It looks like my childhood.”
We didn’t have sidewalks leading out. We didn’t have a bus stop. I walked alone on the shoulders of four-lane roads in the dark. I balanced on railroad tracks (I could do that then). I spent a lot of time alone.
Twenty-seven years post-ADA. Twenty-seven years post-ADA. I forgive 100 times a day.
I need some kind of prosthetic grace, the grace of a sidewalk. The grace of a car, but I cannot drive. The grace of a bus, but transit is not accessible. The grace of friends who drive in for a visit.
I start to mark off days alone.
By December, it looks like a DNA test. My DNA test. Bisulfite mapping of my methylation marks would look like this. Isolation methylates DNA. Obliterates genes. Marks people.
[I forgive 100 times a day.]
Tinnitus like air raid sirens. I Bluetooth rain recordings into my hearing aids, drown out the alarms.
Recordings are not like real sound, 3d sound, the intonations in human voices. People who get out don’t know that. They think sound is sound, voices on TV are just like real life, but they are not. I am starved for human voices.
“You need to get out. Listen to people. Talk. Hear birds chirping. Airplanes. Car horns. All of it,” my audiologist told me after my hearing tests. “Isolation makes tinnitus worse.”
Can’t think. Can’t focus. I lost the prosthetic grace of my epilepsy medication when we moved here. Traumatic brain injuries, spinal cord like Swiss cheese, the terror of the holes expanding every time I fall fall fall like my brain through the foramen magnum. I lose books and find them again and lose them again. I get voice mails purr purr purr of my vibrating phone and forget until weeks later oh I gotta call them back.
“You need to get out,” my neurologists say. “Join groups. Go to lunch. You need to stimulate your brain. You need to be in novel situations.”
We told the landlords we needed an accessible apartment, told them about my walking cane. They said it would not be a problem.
Get out. Get out. Get out. Everyone told me that in Utah because of the air: smog so toxic it was like smoking a pack of cigarettes a day. Come to Colorado. Come to Colorado. We have clean air.
[Driving pollutes, but so does not driving. Catch-22.]
Did you know isolation can make you hear things? Make you forget things? Make you doubt things? Make you dead?
I post on Facebook. I sound too sad.
[I delete 100x a day.]
April sun and medication changes bring mixed mania, mixed mania, mixed mania on rapid cycle. I lash out on Facebook. I fuck up.
“But Karrie,” a friend texts after witnessing it. “You know isolation is illegal in animal experiments, right? Because the animals lose it.”
I have to forgive myself for breaking. Breaking is normal.
[Which means I am not broken. Not yet.]
[27 years post ADA, I learn to take my vitals every day. When my heart is thunkthunkthunkthunk and not beat ___beat ___ beat___beat I know to pull the plug and _______flat line___________on Facebook, on Twitter, on Instagram so nobody has to see who I am when I am broken.]
I circle the hospital in the morning. I circle the hospital in the afternoon. I circle the hospital all day long.
I am my own metaphor. I think that’s a kind of grace.
I don’t know about forgiveness yet [100x a day].
Thoughts after my Cerebellum card test: At first, the connection between the cerebellum and forgiveness frightened me. If my cerebellum is compressed, is my capacity for forgiveness, too? But it wasn’t like that! The cards do not “diagnose” “deficiencies”; they inspire personal journeys. As with many divination decks, they are what you make them. I made them into disability poetics because that’s who I am and what I do.
Courtney suggests wearing magenta or white and using rosewood and ylang ylang oils to stimulate the crown Chakra. Rosewood and ylang ylang! I want to make a hair powder with them so I can catch the scent throughout the day and remind myself of what I wrote. Maybe even to forgive myself.
“Elevate an activity or thing with purpose, meaning, significance and beauty!” She writes. “How might brushing your teeth, doing the dishes, buying groceries, or changing the oil in your car become mindful and enlightening?
Every movement is mindful for me right now, but not in the way she means. My mindfulness is locomotive, automatic, unintentional and sometimes, fear-based. And yet, it has changed how I think about everyday moments. I have started to see the staircase outside my door as my backbone. I was doing that before Body Cards, but now, I am turning it into a conscious meditation on forgiveness. How can I hate this inaccessible apartment, how can I fear those stairs, when they are me? I can forgive this building for being disabled, missing an elevator. (It is disabled like me!) I am it, and it is me. Not sure how I feel about it yet, but it’s a start.
Body Cards offers several spreads of varying complexity: Present Moment, Letting Go, Transformation and Chakra. I decided to try “Letting Go.” It’s simple and tells a story.
II: “Letting Go” Spread
1st card= “The Issue”
2nd card = “What’s holding you back?”
3rd card = “What will help you move forward?”
THE ISSUE: SKIN/RENEWAL: “If the skin has sloughed its way into your cards today, it may signal a time of shedding your attachment to the past.”
Pink! I am the woman with the pink hair, pink tennis shoes, pink cane, pink coat, pink suitcase, pink purse. One doctor at NIH, where I am enrolled in a syringomyelia study, even called me the Pink Lady because of all_that_pink.
I told my husband the first time I bleached my hair to go full-on unicorn since high school, “If I’m going to use a cane, I am going to be sparkly and unicorn-y.” I searched for canes in pastels far and wide. I embraced them as fashion and mobility aids. I never had a moment of oh this is sad. I shed my old skin.
Or did I? I’ve always been disabled — epilepsy, auditory processing disorder (undiagnosed until adulthood), partial deafness, migraines, chronic pain, a birth defect not diagnosed until I was 39– but it’s always been invisible. People couldn’t see it unless I had a seizure, so they didn’t believe it. “You don’t look sick.”
Was I shedding an old skin or flipping mine inside out, demanding SEE ME.
Pink: heart chakra. Was all that pink because I loved myself or because I wanted to? An armor that said I love me, so you should, too?
WHAT IS HOLDING ME BACK? LIVER/REGENERATION: “If the liver card is speaking to you today, it is important to listen, for the liver offers an important message about the power of our bodies to heal.”
How can regeneration and healing hold me back from renewal?
1. verb (of a living organism) regrow (new tissue) to replace lost or injured tissue.
2. Adjective reformed or reborn, especially in a spiritual or moral sense.
1. resume (an activity) after an interruption.
2. re-establish (a relationship).
3. repeat (an action or statement).
4. extend for a further period the validity of (a license, subscription, or contract).
5. replace (something that is broken or worn out).
The first time I saw the hole in my spinal cord, I thought, I did that. I made it. Not my Chiari malformation. Not my neural tube birth defect. Me. Not my DNA. I did. Consciously.
For years, I have been working on a magic spell to resurrect my oldest brother. I call it intentional epigenetics. I am stealing his memories — learning what he knew, doing what he did. Memories have epigenetic mechanisms, which means I am physically becoming him. When I saw my syringomyelia for the first time on an MRI, I knew my magic spell had worked.
My brother had a spine like mine, fused with titanium in the same location as my cervical syrinx, injuries all the way down to where my second syrinx, later discovered at NIH, ends. My brother used a walking cane. My brother’s nerves burned.
Resurrecting my brother, though, means I cannot regenerate my own tissue, cannot heal. A healed body is fundamentally incompatible with his.
[Resurrection has consequences.]
And yet, there is no cure for Chiari-syringomyelia (surgery is not a “cure”), or epilepsy, or central auditory processing disorder, or Bipolar, or migraines, or on & on. Meaning: I cannot hope for regeneration, anyway.
[I circle the hospital in the morning. I circle the hospital in the afternoon. I circle the hospital all day long.]
WHAT WILL HELP ME MOVE FORWARD FINGERS/SELF ASSURANCE:
The first time I visited NIH, a neurologist told me I had thenar wasting. She meant the thenar eminence, muscles responsible for bringing thumb and fingers together: opposable thumbs, the thing that set early humans apart. No more walking on hands.
Thenar: Greek for palm of the hand, sole of the foot.
[Is my cane a leg or an arm?]
One of my syrinxes sits at the spot that innervates the thenar eminence. The signals are cut off, like me where the sidewalks end. [I am my own metaphor.]
The inner “C” between my index finger and thumb burns. Goes numb.
“When you start getting numb there, you know you are in trouble,” my old neurologist said. “That’s your warning signal.”
How can losing my opposable thumbs propel me forward?
I used to hang from gymnast hoops like the figure in the card. I used to pump out chin-ups. Now, I am losing my grip–literally and metaphorically.
This card also signals undue influence from society or family. I wonder about it sometimes, if I am under hypnosis of a kind: you are less than human because you walk on your hand.
I need to shed attachment to the past; my connection to my brother is holding me back, and shedding undue influence will propel me forward. There is something here. I don’t see it all yet. That’s OK.
Courtney suggests rose essential oil and pink clothing to stimulate the heart chakra. I wear pink every day. Drink rose petal tea. Mix rose petal infused homemade lotions. Make rose petal jellies and syrups. Grind rose petals into powder for my hair. Fairy dust. I have always done this. Prosthetic heart.
She also provides a meditation: sit in prayer pose and repeat, I trust my heart, I trust my heart, I trust my heart.
Today, I don’t trust my heart. It is filled with the undue influence of blotted out calendar days and missing sidewalks.
I will try it, though. Not today. Maybe next time the tinnitus gets too loud. Instead of water, I can listen to my voice.
Did you know the word syrinx also means a set of pan pipes, or the vocal organs of birds?
Body Cards by Courtney Putnam have helped me process a difficult time in my life. Looking back, I think my apprehension was whether cards like this could apply to my disabled body. So many things are made for abled bodies — streets with no sidewalks, sidewalks with no curb cuts, apartments with no elevators — that I get wary of anything “body” related. In a way, though, Body Cards were made for me (or someone like me). After all, Courtney was inspired by her healing work with “disordered,” “ungraceful,” hurting bodies – just like mine. And the cards aren’t the oracle, not all by themselves. The body is, too — my body. An oracle of flesh and bone.
[Full disclosure again: Courtney was kind enough to send me a deck to review as I had been eagerly anticipating Body Cards for a long time, and I loved it so much I also bought a second one when I lost the book!]
If you are in suicide crisis, please call the National Suicide Hotline at 1 (800) 273-8255.
If you are a victim of sexual assault in crisis, please call RAINN at 800.656.HOPE (4673).
The first time it happened, a stranger in Prairie Lights bookstore in Iowa City called me “the second coming.” He was pointing to a display of tote bags and t-shirts printed with Virginia Woolf’s portrait.
“That could be you,” he said.
He didn’t know I was a writer. He didn’t know I was sexually abused by a half-brother, just like Virginia. That I am Bipolar, just like Virginia. That I have tried to commit suicide, more than once, just like Virginia.
He meant second coming in body, not mind.
But I saw the dissociation in that portrait, how she floated out of her body. That’s what he sees, too, I thought. He sees I am not all here.
“I feel certain I am going mad again,” I say. I am reading Virginia Woolf’s suicide note to my husband, the one she wrote for her husband. I have been studying suicide notes–their art and craft, their rhetorical strategies, what it means to write them, to not write them.
I feel we can’t go through another of those terrible times. And I shan’t recover this time. I begin to hear voices, and I can’t concentrate. So I am doing what seems the best thing to do. You have given me the greatest possible happiness. You have been in every way all that anyone could be. I don’t think two people could have been happier till this terrible disease came. I can’t fight any longer. I know that I am spoiling your life, that without me you could work. And you will I know. You see I can’t even write this properly. I can’t read. What I want to say is I owe all the happiness of my life to you. You have been entirely patient with me and incredibly good. I want to say that – everybody knows it. If anybody could have saved me it would have been you. Everything has gone from me but the certainty of your goodness. I can’t go on spoiling your life any longer.
I don’t think two people could have been happier than we have been.
“She sounds just like you,” my husband says. “You have said the same words.”
I wrote my first suicide note in 1990. Notebook paper, ballpoint pen, folded and hand-delivered to a friend at school.
“Read it later,” I said. She didn’t know it was an advanced directive: no life saving measures.
I wish I had that note now. I want to know why I did it. Or why I thought I did it. Or what I wanted people to think about why I did it.
Who doesn’t remember their own suicide note?
Lately I can’t think. I can’t read. My eyes skip around l-t-e-t-ers, fill in blanks like Mad Libs. I am dizzy. I can’t walk in a _______ ______. I stumble with my walking cane like I am ______. All day: an electric hum in my ear. bzzzzzzz bzzzzzzz bzzzzzzzzzz the appliances are talking to me.
“I feel like someone who used to be smart,” I tell an old writing mentor. He says I am still smart, but I think: He hasn’t seen me in a long time, hasn’t read my work in a long time. He doesn’t know. A seizure last winter cracked two molars, knocked tooth 19 out of place. Rattled my brains.
I start books and can’t _________. I start essays and can’t _______. I grind batches of bone black ink that go rancid before I can use them. I can’t control a pen like I used to.
My signature changes every day.
Look how the line from the H stabs at “Karrie” like a spear. I cross out my own name. Graphologists call it scoring, cutting. It means suicidal ideation, but how can I know, when I can’t control the pen?
I receive radio transmissions from Saturn.
(transcript at link)
Or is it the tinnitus? Or is it a seizure? Or is it mania?
I feel certain I am going ______. I can’t _____ this time.
I’ve a very low opinion of my writing at the moment. This comes of correcting proofs: it’s all bounce and jerk; I want to spin a thread like a spider.
— Virginia Woolf, 5 August 1927, letter to Vita Sackville-West
I can’t sleep without pills.
On nights when I swallow my amitryptiline, down down down the rabbit hole I fall, landing at the portal to apartment “A,” where my brother Greg died three days before facing trial for sexual abuse in the 2nd degree.
My brother answers, a Marlboro Red dangling from his lips. He recognizes me even though he hasn’t laid eyes on me for twenty-five years. He smashes out his cigarette, yanks me across the threshold by my wrist. Inside, he pins me against the wall, leans in, licks my teeth the way he always did.
Sometimes, I force my way in. “Shhh,” I say when he protests. “I am all grown up. You can’t get arrested anymore.” This time, I pin him against the wall. I leave the door wide open. “Nobody knows I’m your sister.”
Or it plays out like this: He suspects the cops sent me undercover with a wire tucked into my bra or a transmitter concealed under a tooth cap. I strip out of my clothes, shoes to bra, to prove I am not a secret agent. I open my mouth wide, let him swab my teeth with his index finger and yank on my root canal crowns. He kneels, wraps his arms around my legs, and cries. I stroke his cowlick and whisper, “Don’t kill yourself. Don’t die. Let me save you.”
“I am jealous of your tidy ending,” a friend says. “His death was a blessing.”
“He wasn’t a suicide guy,” his Airborne buddy tells me. “He would crawl through guts and nails and shit and still keep going.”
In the police report:
In the autopsy report:
Cause of death: undetermined.
In a message from his ex-wife:
“I can tell you .. that on two different occasions I had found Greg in the same condition, in the same position. Once in our family room. And the other time in our hot tub building outdoors. That time I had to call an ambulance because he was unresponsive. It was in the wintertime, and when they finally got him on the gurney & outside where the air was cold, he started choking, sat straight up & said, “What’s going on?” He refused to let them take him to the hospital & had to sign a statement to that effect. I told him the next day I was going to call his doctor about the medications. And (this is the first time he had ever “threatened” me) he shook his fist in my face and said “Don’t you dare. If you do, she’ll stop giving me the pain medications.”
“I know what I’m doing.”
The police mailed me crime scene photos of my brother’s body.
They let me see the putrefactive decay in his jaw.
They let me see the fixed lividity in his chest where the blood, no longer pumping, pooled like blooming bruises.
They let me see his penis, bloated with carbon dioxide, as ridiculous as a balloon animal.
But not the pill count. They redacted the pill count. Suicide is a medical record.
May 15, 1990, in the psych ward after I swallowed all my epilepsy pills, psychiatrists interrogated me for a precipitating event:
“He could never sleep,” Greg’s Airborne buddy told me. “He was up making peanut butter sandwiches 3 or 4 times a night. He just never slept. That will kill a person, you know.”
“Is there any chance in your mind that he committed suicide?” I spit the words out fast, afraid he will cut me off.
“Honey,” he says, “You could have pushed him out of the plane without a parachute, and he would have landed. Your brother was tough. He was a tough man. You couldn’t take the parachute off him.”
He means an Army parachute: Jump School, Fort Benning, 1975, my brother graduated top of his class, Iron Mike Award, the best of the best.
I don’t tell him about the Army records.
October 18, 1976:
March 24, 1977:
June 29, 1977, note in the Army medical chart:
I don’t tell him I practiced rolling off the couch the way the Medical Examiner described it in the autopsy report. Even the best of the best couldn’t stick that landing. No way he did it doped up on narcotics with a bad back and a bum knee. For weeks, my hips and knees bloomed purple. He got down in that position. He knew he was dying.
Or how, when the crime scene photos arrived in the mail from the Cedar Rapids Police, I stripped nude and crouched in front of my couch in an identical position to my brother’s body, 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 that last moment, one final fuck you on his way into eternity.
“What if he did it because he was afraid they would take away his painkillers in prison?”
What if my brother killed himself because he was disabled?
“That’s a real possibility.”
May 18, 1990, movie night in the psych ward.
Molly Ringwald as Lonnie, all ginger bob and pink scars on her wrist, sneaking out her bedroom window with boyfriend Rick. Star-crossed lovers, forbidden.
They ride and ride and ride on his motorcycle, past a car dealership, Pat Benatar soundtrack.
They almost crash head-on into a car.
They almost crash into a train.
“Rick you’re gonna kill us!” Lonnie screams as the train whooshes by.
“We could have kept going,” Rick says. “We could have done it.”
“It’s not that easy, Rick. We could have ended up crippled, or lost an arm or leg or both, and then we’d have to depend on our parents for the rest of our lives.”
It was better to be dead than disabled.
They sneak into Lonnie’s garage, hot-wire the family car, fall asleep on the front seat.
The next morning, their corpses are whole, beautiful, perfect, radiant, dead. Not disabled.
May 15, 1940, Virginia Woolf’s diary:
An appeal last night for home defence—against parachutists. L. says he’ll join. An acid conversation. Our nerves are harassed—mine at least: L. evidently relieved by the chance of doing something. Gun & uniform to me slightly ridiculous. Behind that the strain: this morning we discussed suicide if Hitler lands. Jews beaten up. What point in waiting? Better shut the garage doors. This is a sensible, rather matter of fact talk.
No, I don’t want the garage to see the end of me. I’ve a wish for 10 years more, & to write my book …
This idea struck me: the army is the body: I am the brain. Thinking is my fighting.
The ENT orders a balance test, spinning me blindfolded in a rotary chair in a dark booth. I lose all sense of space and time. I am a paratrooper, jumping from a plane in the dark of night.
“It’s not your vestibular system,” he says. “It’s your brain.”
The army is the body.
It’s not just my brain. I am losing on all fronts.
“It looks like a bullet shot clean through me,” I say to my husband, pointing at the silvery hole in my spinal cord. A syrinx, a cavity, like in a tooth.
Syringomyelia, caused by my Chiari I Malformation. A birth defect, like I was doomed just by being born. My brain is occupying my body now.
The syrinx is a scorched earth campaign, destroying neurons, burning up my spinal cord until it paralyzes me. It could take years. Could take days. I could wake up tomorrow unable to swallow.
I picture a nurse hoisting me into a bathtub, flash to my brother clicking the lock on the bathroom door, unbuttoning my pajamas.
Pistachio porcelain bathtub. Chipped plaster. Calk thick as toothpaste fresh out of the tube.
I am eight years old. David Copperfield is on the television in the living room. Can David do it? Can David Copperfield make the Statue of Liberty disappear?
My brother’s ribcage crushing mine. His hipbones thrusting against my hipbones, hard as my father’s belt buckle, but I can take it because I figured out how to make pain move.
Straight line from the hole between my legs to the empty socket where my molar used to be. The socket only feels good when I stick my tongue in it. My brother is licking the socket, licking the socket, licking the socket. My tooth socket can take what I can’t.
And then one day it occurred to me that I could show with magic how we take our freedom for granted. Sometimes we don’t realize how important something is until it’s gone. So I asked our government for permission to let me make the Statue of Liberty disappear—just for a few minutes.
I thought if we faced emptiness where for as long as we can remember, that great lady has lifted her lamp, why then, we might imagine what the world would be like without freedom, and we’d realize how precious our freedom really was.
But nobody in that live audience is facing emptiness. People cheer. People applaud. One old lady shouts, “I have never seen a Statue of Liberty disappear like that one before!”
They are glad the statue vanished. They are glad for the empty harbor. Nobody cheers for getting tricked. Nobody wants to be a fool. Which means they believe the statue is really gone. They believe in magic.
They want freedom subject to magical forces.
Syringomyelia restrictions: No running, no jumping, no prolonged standing, no strenuous activity, no lifting, no overhead work, no push-ups, no pull-ups. “And no parachute jumping,” my neurologist jokes.
My neck burns. My shoulders burn. Vertebrae topple out of place like a Jenga tower. I can’t sleep. Can’t sit. Can’t stand. In syringomyelia speak, it’s called the cape. I call it my parachute harness. I am strapped in. The pain protects me, keeps me from falling falling falling. It reminds me: take my epilepsy meds. It reminds me: walk slow. tick tick tick tick tick goes the bomb inside my spine. The army is the body.
The doctors predict my future: gabapentin and morphine. Same drugs my brother took after his spine got crushed making the machines that harvest the corn to make ethanol. When was the last time you heard anything good about carbon monoxide? Down down down down the rabbit hole I will fall, into Apartment A.
Crouched in front of the couch in the fetal position. My birth defect is going to kill me. My birth is going to be my end.
Thinking is my fighting. Thinking is my fighting. Thinking is my fighting.
I begin to hear voices.
David Copperfield is casting magic spells through the Walker Center Weather Tower.
I think I think I think David Copperfield cast a spell on my spine.
My neurologist prescribes me a new epilepsy med. The pill of last resort, I call it. No generic. Poor insurance coverage. Sometimes thousands of dollars for a 90-day supply.
“I am sucking us dry,” I tell my husband. I have no job. No hope of a job. I made $50 last year.
Sucking us dry: that’s what my father used to tell me every time a new hospital bill landed in the mailbox. Now I say it, like something I inherited, something in my genes that makes me turn on myself.
I am afraid of being disabled under President Trump.
They put us to sleep with our own medications. They put us to sleep.
“How terrible that you never got to grow up and live your adult life,” an anesthesiologist says, when he asks if I have a ride home from my root canal, and I tell him I cannot drive because of epilepsy.
When the Propofol hits, I feel myself floating out through my tooth socket, the same way I did with my brother, the same way I still do when I have sex. I tug at the oxygen mask, wriggle in the chair. This feels just like—
Baby Grows Up. I despised that doll. She grew when she sucked her magic baby bottle and shrank back to baby size when you yanked a cord from the base of her spine. I knew it was a lie: adults could make you all grown up by sticking things in your mouth, but they could never make you a baby again.
I fed her bottle, yanked her spinal cord, fed her bottle, yanked her spinal cord, over and over like a hex.
The dentist stands very clean and impersonal in his long white overcoat. He tells one not to cross one’s legs and arranges a bit under one’s chin. Then the aneasthetist comes in with his bag as clean and impersonal as the dentist and only as black as the other is white. Both seem to wear uniform and to belong to some separate order of humanity, some third sex … These are the people who manage the embarcations and disembarcations of the human spirit; these are they who stand on the border between life and death forwarding the spirit from one to the other with clean impersonal antiseptic hands.
–Virginia Woolf, “Gas”
“Do you know why I love Propofol?” I tell my husband. “It doesn’t make you high. It doesn’t drag you down. It doesn’t make you feel anything. It’s like the coffin lid slams shut, and–” I snap my fingers. “You’re dead.”
Every time I see the dentist now, I hope for a root canal. I hope for any procedure that justifies Propofol. My dentist is my dealer, and he doesn’t even know it. “If I could buy that shit over the counter,” I tell my husband. “I would have a problem.”
Later, I learn that survivors of sexual trauma are attracted to the dissociative state it induces. I love a drug that feels just like sex with my brother. I love a drug that feels like abuse.
I write Dr. Omar Manejwala, an expert in Propofol addiction. I ask, “Is it suicidal ideation?”
“I think that this is a primitive defense,” he writes back. “It allows for self-denial without the moral implications of suicide.”
“You’ll feel it first in your fingers,” the neurologist says, making a C with one pointer finger and thumb and rubbing it with the other.
How do I kill myself if I can’t use my hands?
December 1983: My brother Jimmy fired a bullet through his heart. Temperature: 30 degrees below zero, cold enough to crystallize diesel, clog fuel injectors, slow school buses to a creep. Cars were scattered like abandoned toys in the streets, as if the Rapture had translated their drivers straight out of the bucket seats.
At AAA: distress tickets piled up three inches thick. Mom & Pop towing services turned callers away.
Jimmy’s horoscope in the Cedar Rapids Gazette: a phone call brings good news.
His father—his real father, I was told— rendered his tow truck a super vehicle: tank filled with Diesel 1, impervious to cold. All night, every hour on the hour, he flipped the ignition to heat the engine.
Jimmy knew about the pile of distress tickets. He knew his father could save the cars or his son, but not both. He knew, and he pointed the gun barrel at his heart and fired.
Jimmy died because the cars stopped.
(When was the last time you heard anything good about carbon monoxide?)
Etched into his gravestone: If I go to heaven I earned it; If I go to hell I deserved it.
“I knew your brother as Jim Higgins first,” his elementary school friend tells me. “Now this is where it gets sketchy because he had his name changed and he talked about him having other toys at his other house so I don’t really remember the details … I think if anything messed him up was a series of name changes because that became a stumbling block for a lot of the kids in our class in fact when we speak of him still we always mention the name changes.”
He means when my father rescinded his adoption.
“Why did dad do it?” I asked my mother.
“Child support,” she said.
Jimmy was a burden, too. Jimmy was draining my father dry.
May 20, 1990: a psychiatric nurse told me to be kinder to my father, to show support and love for him, to bereasonable.
He knew about my black eye, the one my mother lied about to cover up:
He knew about the cuts all up and down my arms, scoring from dull butter knives I sawed back and forth across my skin.
He knew my father was under investigation for child abuse.
He knew that, and he told me: you are the burden. People who swallow the pills are always the burden.
May 20, 2016: I sign a last will and testament. I want my papers in order before I lose control of my hands. I want my father written out of it.
Thy will is not done, I say out loud to my psychiatric chart. My will is done.
I message my old writing mentor a letter from Virginia Woolf to Beatrice Webb, April 8, 1931:
I wanted to tell you but was too shy, how much I was pleased by your views upon the possible justification of suicide. Having made the attempt myself, from the best of motives as I thought – not to be a burden on my husband – the conventional accusation of cowardice and sin has always rather rankled.
He messages back with a quote from Christopher Isherwood:
There is one question which we seldom ask each other directly: it is too brutal. And yet it is the only question worth asking our fellow-travelers. What makes you go on living? Why don’t you kill yourself? Why is all this bearable? What makes you bear it? … You did whatever was next on the list. A meal to be eaten. Chapter eleven to be written. The telephone rings. You go off somewhere in a taxi. There is one’s job. There are amusements. There are people. There are books. There are things to be bought in shops. There is always something new. There has to be. Otherwise, the balance would be upset, the tension would break.
We talk through other people.
I can’t say, I want to _______ ________.
He can’t say, please don’t _______ ________.
I don’t know why I dump this on him. I don’t know why I choose him. I have always been like this. I choose the wrong people. I intrude. I send inappropriate messages. I do social media all wrong. I do social all wrong.
A friend says my Facebook posts are too sad. I don’t sound right. I am becoming a burden.
“I look at everyone’s Facebook feed,” I tell my husband. “They take vacations. They go to concerts.”
“We can’t do that,” I say. “Because of my medical bills.”
If I die, you can take vacations. If I die, you can live.
I don’t know whose thoughts are mine and whose aren’t anymore.
Last year, I got the paperwork to donate my body to a body farm, but I got stuck on one checkbox:
____Trauma and advanced research request: Your initials indicate that you permit your remains to be used for trauma.
“It’s too sad,” a friend said. “Haven’t you had enough?”
“But I’ll be dead,” I said. “Does it matter?”
But it does matter. The act of donation means it matters. I want my body to be a blessing to somebody. Solve a murder, maybe. Put a killer behind bars.
I think of Virginia Woolf’s body, tumbling in the current of the River Ouse after she loaded her pocket with rocks and waded into the water.
I think of Greg, his balloon-animal penis.
Jimmy turning blue in air so cold it crystallized diesel.
I want my death to be a blessing to somebody, but I want it to be a blessing to me, too.
1st Place: joining 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/.
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.
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
Truthfully, it was so hard to choose! Thank you again to everyone who submitted!
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.
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.
She pointed to my cane. “You’re a colorful personality. I can tell.”
“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.
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.
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.
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.
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, too. Boy, 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.
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.”
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.
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.
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.”
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.
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 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.
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!
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.
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.
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.
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.
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 natureand similarity of placeof 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.
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)
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.
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.
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:
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 mywriting 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.
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.
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.
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.
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.
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 ….
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.
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.
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:
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)
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!
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.
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:
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!).”
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:
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:
“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.
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.
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 …
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.
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.
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)?
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.