Today I was talking to a friend about my project of filing an IRS Referral to investigate the tax exempt status of the Association of Writers & Writing Programs, following yet another year of disability exclusion and ADA violations at the annual conference:
My friend is a lawyer, so she very gently and sweetly wanted to make sure I understand I have zero chance of winning–not to discourage me from trying, but just to make sure I know what I’m up against. This is a very tough area of law.
She was much relieved when I said, “Oh, of course I am going to lose!” (Followed by my foghorn laughter!)
I told her about my ongoing performance series called Losing Propositions, in which I barrel into battle knowing full well I have no chance in hell, and in fact, it is the entire point: It’s the performance I am interested in, the idea that having nothing to lose is, in its own way, an extremely powerful position from which to operate.
I can scream and yell about AWP online because everything they could take away from me — seats on panels, a slot at a reading, maybe a guest post on their site — is already gone.
And here is a space in which I feel extremely comfortable. Happy, even. Is that weird? It’s my happy place, diving deep into legal research knowing full well the deck is stacked.
In 2015, when I was applying to PHD programs, it started as a performance, too. I was angry about AWP’s systematic rejection of every single disability panel, and I had always wanted to earn a PHD. These two things are not disconnected: AWP is primarily a network of member educational programs, and those programs are inherently ableist at their core. I thought, OK, I will apply to programs and seek accommodations in the process (primarily, a waiver of the GRE), and I will Facebook-blog each response publicly.
I expected every single program to slam the door in my face.
But do you know what happened? The very first school — my dream school, in fact — said yes. And then another school did, and another. Each one that said yes made a stronger case for the next school because I could list them all and say, “Seven other programs have granted this accommodation, which speaks to it being reasonable under the ADA.” It snowballed. By the time it was over, I had applied to so many programs I cannot remember the number now.
When schools denied my accommodation request, I argued my case and asked them to reconsider. If they continued to dig in their heels, I sent them research into the futility of the GRE in predicting success, particularly for underrepresented groups. When they dug their heels in deeper, I FOIA’d them, seeking very specific data that might help me estimate how many people in their programs are disabled, since schools do not keep track of disability as a form of diversity.
I got data dumps like you wouldn’t believe.
I posted everything on Facebook. Again: performance. Nothing to lose. Performing my losses.
But see? It was the “not having anything to lose” that fueled it. Thinking of it as performance made me powerful. Made me invulnerable to the pain of losing. Made me BOLD. But then, as often does in my work, performance became reality. In fact, some of those programs have since dropped the GRE requirement altogether. I can’t take credit for that development, but I can take satisfaction that my “test case” was on the right track.
That’s what my friend said when I told her about this performance series. “You’re a test case!” She told me about historical cases where activists essentially did the same thing: they knew they were going to lose, but they had to at least try. Sometimes they won. Sometimes they lost, but — and this is key — got their enemies to come out and state their true position so they knew what they were really up against. And from there, they formulated new strategies.
I never thought of what I’m doing that way, but I like this framework. When I approach things like filing an ADA complaint against AWP in 2015:
I think, somebody has to do it. Why not me?
Back in 2016, when I got that letter from the DOJ, I didn’t know what I had in my hands. I had a right to sue letter. Again: losing can be powerful all on its own. And as another disability activist told me, this letter is beautiful. It shows how long we’ve been fighting.
Every year, AWP treats our disability access & representation as a brand-new problem, as if we haven’t been fighting this fight, traveling in this same circle, over and over. But here we have proof. Legal proof. It is beautiful.
This is why I do it publicly: on social media, on my blog, in essays, in Twitter rants. I am performing justice. I want to show people it matters enough to fight–even if the odds are stacked against you. The process, the fight, the boldness, are what matter.
I know I have less than a 1% chance of winning on this 501(c)3 thing. That’s OK with me because … what if I do win? What if I’m the test case that becomes case law?
In 2016, when I moved to Colorado, I made protest art about the missing sidewalks and curb cuts. Everyone told me it was a waste of time. They had never seen a city respond to such a thing.
Do you know what happened by the end of that year? That sidewalk above got paved & the curb cut installed. The City saw my protest photos and just did it.
Sometimes, once in awhile, you fucking win.
But Losing Propositions–that’s where I find my power to keep going.
When I go in with the intent to lose, you can’t take my hope. You can’t take my dreams. You can’t even take my time.
If you tell me I am wasting my time studying 501(c)3 case law, I will tell you about how much I learned about the history of disability rights in education, like this case from my hometown. I will tell you how much I loved formulating a strategy, looking for ways to push disability justice forward. How can that be a waste of time?
Losing, sometimes, is winning.
CW: death, graveyard, car accidents (in newspaper photos and headlines)
On the anniversary of Challenger, I visited my brother’s grave for the first time.
If you have read my work, you know this date is significant to me. Two days after the last time I saw my brother, I watched the Challenger disaster on TV. I confuse NASA Public Affairs Officer Steve Nesbitt’s voice with my brother’s.
I’ve made spectrograms comparing them:
I didn’t plan to go to my brother’s grave on the Challenger anniversary. My husband and I traveled to Cedar Rapids for my Aunt Joann’s funeral and my appointment with a geneticist.
We had very little time — only a few minutes — and we had to sneak to the cemetery without telling my family. I needed to be there alone. I needed to process it without the sibs or my father.
Except I can’t go there alone, not really: no buses reach it; I can’t drive. My brother’s grave is unreachable except by car. Even grief rites are inaccessible sometimes.
As we drove toward the cemetery, we passed Prairie High School, and I gasped. “We are in the territory of my brother,” I said. “This is the land of Greg.”
He lived near Prairie High, attended Prairie High. I lived to the north, attended Kennedy. We had different geographies. Sometimes it didn’t feel like we came from the same city.
When we turned onto Highway 30 and passed the ADM plant, I said, “This is the land of my father.” It’s where he worked my whole childhood.
It was the land of Greg, too. “My brother had his first life-changing injury there.”
I have always felt like that factory ate my brother.
“Watch out for the fog. It creeps over the highway and causes accidents. That ethanol factory eats cars.”
It felt like the ADM plant was standing sentry. Or maybe my father was. I always feel like he is there, at ADM, watching.
When we turned into the cemetery, I found my brother’s grave without even having to wander.
It felt like somehow I had always known where he was.
It was cold–not just any cold, Iowa cold. My hands froze so badly I could not control them at the end of the shoot, when we returned to the car so I could change my skirt and wig to rush to my mother’s apartment. I couldn’t open the wig bag or slide the cap over my head. My fingers refused to grip. I cried. I needed to get that red wig off me. It’s the hair I associate with Greg. It’s a secret. The skirt, too.
My joints hurt. They were all out of place. The pose caused subluxations in my ankles and knees from my newly diagnosed Ehlers Danlos Syndrome. It’s excruciating to stand and balance like that for my ataxia & syringomyelia, too. That’s why I chose the pose: it puts me in Parallel Stress (see my other images in this series at this link).
We had to hurry so nobody would wonder where we were. I didn’t have time to process it. I am still processing it.
The last time I saw my brother alive: Challenger.
The first time I saw his grave: Challenger.
That I have to keep my grief secret: obviously a major malfunction.
CW sexual assault
In college, I lived in the Foreign Language House, a special wing of a dormitory dedicated to students who wanted to practice a foreign language every chance they got. It was a close-knit group, and activities like naked Star Trek — which, as a survivor of sexual abuse, I had way too much body shame to participate in — were the norm.
One of the guys there gave massages. He was a good friend, and I trusted him, so when he offered, I said yes.
I don’t remember a lot about before & after, but I remember his hands slipping around my ribcage and touching my breasts. I remember his fingers sliding under my bra band and into the waist of my pants. I remember freezing. I remember being afraid to tell him to stop because he was a friend, and I didn’t want to hurt his feelings.
Never mind it triggered memories of my brother’s grooming, hands slipping up the front of my shirt “on accident” while wrestling. Never mind I felt violated and used. I thought he was a friend. It was normal in Foreign Language House for people to touch each other — hugs, hand-holding, cuddling under blankets — and I had no reason to think a “massage” meant “sex.”
I want to say I pushed his hands away, but I don’t remember.
I want to say I told him to stop, but I don’t remember.
But I remember the aftermath. The aftermath was the worst part.
A woman moved into my dorm, and I warned her about the massages. I told her to watch out because you think it’s just a massage, but then he gropes you. “His hands start sliding under your bra,” I said. “If he offers, don’t do it.”
He had visited the room a few minutes before to introduce himself. I saw how he was looking at her, and I didn’t want it to happen to her, too.
I didn’t know I was participating in the whisper network, in which women warn each other about men who violate them.
And I didn’t know he was lingering outside the room, listening through a vent.
Later, he confronted me. “Sounds carry through those vents,” he said. “I heard you.”
He accused me of violating him. Hurting his feelings.
I wanted to ask how come he lingered outside that room. Was he worried I might warn her? Did he know he had done something wrong? I was too flustered with shame, too afraid of hurting his feelings again.
It was never the same after that. Friends stopped saving me seats in the cafeteria. I had hurt their friend’s feelings. He was such a nice guy. How could I even think he would grope me?
Nobody asked about my feelings.
Nobody asked if I was OK or why it bothered me or what happened.
It was just like my family all over again: shhhhhh, keep things our little secret or else.
And it worked. The shaming worked. I started to think I had done something wrong.
Last night, I learned my husband (then an acquaintance) was on the other side of all this. He had to listen to this guy complain and whine about his hurt feelings.
“I explained to him over and over why he was wrong,” my husband said. “He wasn’t having it. To him, you were getting in his way, spoiling his chances to pursue other women.”
I left the dorm not too long after. He stayed. He got me out of his way.
CW: mention of suicide, descriptions of ableism
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.
Which is why when I learned Dr. Katie Rose Guest Pryal had written Life of the Mind Interrupted: Essays on Mental Health and Disability in Higher Education, I was ecstatic.
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.
And what about instructors and students who lack access to medical care? Or women of color, whose pain goes disbelieved, denied, and untreated? Transgender colleagues and students, who face misgendering and abuse at the hands of doctors? The very concept of “documented disability” is exclusionary so long as access to documentation isn’t equal.
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.”
When I was a graduate student, a faculty member joked that proximity to a certain faculty member caused a couple seizures. The implication: my seizures are sexual. I don’t think anyone would have made that joke if I were a man.
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.
Want to read about some of my ink magick? Find it right here. I chose the page rather than post format because it’s formatted partly in two columns and needed more width. Enjoy.
Today is the one-year anniversary of the MRI that diagnosed my syringomyelia.
It was supposed to be a routine checkup after seizures. Sort of. My neurologist got freaked out by my gait, my abnormal smooth pursuit eye movements, my asymmetrical reflexes. She ordered a c-spine. We never did that before — only brain.
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.
The Day After aired November 20, 1983: one month before my brother Jimmy died. I have always associated nuclear bombs with brother death. And there I was in 2016, in the middle of a resurrection spell to bring my other brother Greg back to life, and I made myself a spine like his:
Resurrection has consequences.
Tear at me, searching for weaker seams.
I’ll tear at you, searching for weaker seams.
Resurrection and apocalypse. Resurrection requires apocalypse. Resurrection is apocalypse.
Nuclear winter is coming.
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.
tick tick tick