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.
In 2009, he talked about his epilepsy publicly for the first time on PBS with Tavis Smiley. "From that point on," he said, "I've been having to deal with a lot of things, getting teased a lot in school. And early in my career I tried to compensate by being as flashy as I could and as noisy as I could."
Prince was a walking disability poetics.After that, when I listened to his music, I thought: Prince has a Sparkle Brain.
Sparkle Brain. My term for my Epileptic, Bipolar, Chiarian, PTSD-brain--for any neurodivergent brain. Sparkle Brain is big tent. Autistic brains are sparkly. Psychogenic Non-Epileptic Seizure brains are sparkly. Sensory disordered brains are sparkly. Neurodiversity in all its forms is sparkly.
I mean sparkle literally: my brain is extra electric. When my brain lights up, it sparkles like it's 1999.
But I mean it figuratively, too: sparkly, like a disco ball. A Sparkle Brain is shiny. A Sparkle Brain is beautiful.
Sparkle Brain is my fuck you to neurologists who only see me as broken. My fuck you to editors who want me to cut epilepsy out of my writing because they don't think it's relevant, they don't think it sells, they don't think it's sexy. My fuck you to neurotypicals who think I need to be fixed.Sparkle Brain is Disability Poetics.
When I was fifteen, the neurologists told me not to dream big. They said I lacked realism in my aspirations.
My aspirations: earn a PHD, write books.
Prince is the affirmative defense.
Prince had a Sparkle Brain. Prince dreamed big. Prince made music so sparkly the neurotypicals are jelly.I wish I had known about his epilepsy back then. As a working class (and often poor) kid with parents who didn't get it and didn't have the money or time or education to advocate, pre-ADA, I believed what the neurologists said. Don't dream big. Don't dream big. Don't dream big. I heard it in my head like an ear worm, like tinnitus made of words.
Last year, after the largest writing organization in the country, AWP, rejected every single disability panel for its annual conference, I filed an ADA complaint, and the Department of Justice mailed me a letter explaining they lacked resources to investigate. On the second page: a list of assisted living facilities and voc rehab programs.
Go bag stuff at Goodwill, they were saying. They wanted to funnel me into the sub-minimum wage disabled labor pool.Don't dream big. May lack realism in her aspirations.
Lately, it's been hard to love my Sparkle Brain. I am struggling with word-finding, suspected auditory processing disorder, dizziness (hence, the walking cane), falls, eye-tracking problems, tinnitus, more frequent seizures, and fatigue.
When I got accepted into a PHD program, I asked friends for advice seeking accommodations. They said, "Whatever you do, do not use the word 'cognitive.' Ever. They will think you are dumb."
Even among people with disabilities, there's an ableist hierarchy: So long as your brain is OK, you are OK.
I bought into that shit. I internalized it. I was ashamed.
Once, I told a friend, "I don't have a learning disability. I have cognitive disabilities."
Later, when I found out my (maybe) auditory processing disorder is a learning disability, I thought: Will anyone ever believe me about my high IQ? Will people think I am stupid?
That's internalized ableism, and that's exactly why I can't keep this stuff secret and call it self-protection. It isn't protection; it's destruction.What would Prince say? He would say: get freaky with it. Make it shiny. Make it loud. Make it your art.
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.
In high school, a teacher--not just any teacher, but the most popular high school baseball coach in the state, our very own Cedar Rapids, Iowa, version of goddamned Jerry Sandusky--forced his hand down the front of my jeans into my panties, yanked me toward him by my waistband, and whispered so close to my face I could taste his sour breath, "I know things aren't right at home."
He said it like a threat. Nobody will believe you. You're the freak. The epileptic. The poor, white trash. The kid with the father who skids into the driveway in his rusty Chevy pickup, breath reeking of alcohol. I know things aren't right at home.
Later, when I overdosed on my epilepsy meds, he sent packets of math homework to the psych ward and refused to tutor me.
Don't dream big. May lack realism in her aspirations.
When he died and everyone was posting eulogies on Facebook, I spilled it. "I waited half a lifetime to tell this story," I said, "because none of you would have ever believed it."He got a baseball field named after him. I got unfriended.
Once, my father heard Darling Nikki blasting from my bedroom, and he called it trash. "No daughter of mine is going to play music like that."
Music like that. Music that made me feel like sex was OK, that I was OK, that my body wasn't filthy, ruined, that maybe it even held secret powers, that I knew things the other kids didn't. That I wasn't trash.
You have to understand: sexual abuse sometimes felt good. It's a normal physiological response. I knew stuff the other kids didn't.
It wasn't just the lyrics. It was that voice. God, the way Prince could grind with his voice. My father heard a man celebrating a woman grinding. My father heard something threatening to the social order in our house, where he ruled over my mother, my sister, and me with an iron fist and the buckle end of a belt.
That video for When Doves Cry, when Prince pulls his father off his mother. Violence. Sex. Ambiguous gender.
Music like that. My father screamed at me when he caught me with my hands in my underpants. I was seven or eight. I had already been to the doctor for unexplained bleeding, unexplained infections. Nobody made the connection with my brother. I was shameful. I was sinful. I got a beating with the buckle end of the belt.
Later, when the truth about my brother came out, my father didn't believe it. He visited him in secret. A couple years ago, I mapped his criminal traffic violations to prove it. He visited my brother, praised my brother, called him his favorite son.
My father was more disgusted about me touching myself than my brother touching me.Prince told me, fuck that shit.
My brother taught me my value was in my body, in my looks--not my brain.My father did, too. Once, as the entire extended family watched from the dinner table, he lifted my skirt until my panties were showing, and said, "The boys must like it."
When I got prescribed a walking cane, I read shit like this on the Internet. I thought: I will never be sexy again.
Strangers feel entitled to tell me: You would be so pretty without the cane.
But you know what? Prince had a walking cane. He had a goddamned sparkly rhinestoned cane. And he was still sexy AF, and only liars would deny it.
Prince is the affirmative defense, always.
Prince was a walking, sparkly disability poetics.
I have a collection of walking canes now. All loud, all colorful.
When a fellow Sparkle Brain dies young, I take it hard. Sparkle Brains are 11x more likely to leave this earth too soon. They are more likely to die if they abuse drugs than non-sparkles who do. They are more likely to commit suicide.
The Sparkle Life is a tough life. The Sparkle Life burns out fast, like a high-wattage bulb.
I feel the clock ticking every minute of every day. I swear I even hear it: tick tick tick tick tick tick tick tick tick tick tick tick tick tick.
My first thought when I read Prince died: Did the epilepsy get him?
When I shared this fear with friends, they said things like, "I heard it was a drug overdose." "He was addicted to painkillers." "It would be sadder if it were a drug overdose."
They do not know the fear. They do not hear the clock ticking like I do.They do not understand: his disabilities cannot be erased. Even if it was drugs, it is still about disability. Pain is disability. Addiction is disability. And epileptics, if they do abuse drugs, are more likely to die young.
The past few days, friends have posted tributes: Prince helped them love their broken, weird selves, they say. It's beautiful, how he did that. But they leave out his epilepsy, the whole reason he made himself so colorful in the first place. They leave out the disability poetics.
Prince was intersectional in more ways than one.
As a straight, white woman, my experience of disability is different from an LGBTQA person of color, for a lot of reasons, and I want to be blunt about that, because so often, race, sexual orientation, and gender identity get erased from the disability experience. Prince meant a lot to me, but there were a lot of things he couldn't mean to me, not like he did to Ekundayo Afolayan or Jack Qu'emi Gutiérrez.Read those stories. Learn. Do not erase race from the story. Do not erase gender identity and sexual orientation. Do not erase intersectionality.
My able friends were surprised when I posted on Facebook about Prince's Sparkle Brain.
They might have read about it, they said, but they forgot.But we, the Sparkle Brains, we never forgot. It meant everything.
When I got home from the audiologist, the news about Prince broke. It's too late, I thought. Even with hearing aids, I will never hear him like I used to. It will never be the same.
But the truth is, I never understood music. I never heard it like other people hear it. In elementary school, when we learned the keyboards, I didn't understand the scales. I had trouble discerning subtle differences in tones. I memorized finger positions--visually, I mean, like snapshots. I heard notes as beats.
It's how I process poetry, too. I do not hear stresses. I struggle with scansion.
That's the auditory processing disorder. The learning disability. The one I refuse to be ashamed of.The one that means maybe I will always hear the music like I used to. Maybe even with my hearing loss, I am not losing anything. Maybe sometimes a learning disability means you learn things other people don't.
The day after Prince died, I walked with my purple cane and cried and cried, blasting Darling Nikki and Little Red Corvette on my iPod.
I felt the tick tick tick tick tick tick tick tick tick tick acutely. I felt the drumbeat of my cane. I am a walking musical instrument, I thought. My body makes music just for me.
I am making music with Prince.