KARRIE HIGGINS is a writer, magician, performance artist, ink-maker, forger, seamstress, disability activist, and rebel theologian without a faith, living in Boulder, Colorado. Her writing & Intermedia art have appeared in Black Clock, DIAGRAM, The Manifest-Station, Quarter After Eight, Western Humanities Review, Rogue Agent, Deaf Poets Society, Cincinnati Review, The Los Angeles Review, LA Times, and many more. She won the 2013 Schiff Award for Prose from the Cincinnati Review and her essays have twice been notables in Best American Essays. She is too hardcore for the Huffington Post.
ROAR: Who is a feminist you wish the world knew more about?
KARRIE HIGGINS: Kate Kelly! She founded Ordain Women, an organization that advocates for the ordination of Mormon women to the LDS priesthood.
I don’t know if my friends understood what I went through when my husband and I moved to Salt Lake City from Portland in early 2009. I am a rebellious, outspoken woman who drops a lot of F-bombs, takes no shit, and is childless by choice. In Utah, choosing to be childless is practically a sin! I was denying spirit babies their bodies. I was defying God’s commandment: be fruitful, multiply. Even though I am not LDS, I felt the thumb of the Church pressing down on me. My husband and I used to joke that we were ex-pats.
Then in 2013: Kate Kelly! She gave me hope. In October of that year, I marched with Ordain Women to the door of the Priesthood Session at General Conference. I was captivated by Kate Kelly: her faith, her optimism, her sincere belief that the leaders of the Church were going to open that door. She believed—really believed. Do you know how rare that is? She was luminous. Her faith was contagious. There was something about her. Of course, they didn’t let us in, and the following summer, she got excommunicated.
Her words to her all-male Church disciplinary council: “I cannot repent of telling the truth, speaking what is in my heart and asking questions that burn in my soul.”
I cannot repent of telling the truth.
The morning after Kate Kelly’s excommunication, I reported to falcon duty on Temple Square, where I guarded Peregrine Falcons freshly fledged from the nest box on the Joseph Smith Memorial Building. Falcons! Symbol of the un-converted Gentile. I was helping them fledge–escape–from Temple Square. To me, it felt like a secret protest. Symbolic, alchemical work. I knew I would have to leave SLC.
Kate Kelly paid the price of a “spiritual death” to stand up Church leaders, and she continues to fight for women. She has worked tirelessly for Planned Parenthood, abortion rights, LGBTQ rights, and will be marching in DC for the Women’s March.
Yet, when I tell friends about her, they usually say, “Mormon feminists? Isn’t that an oxymoron?”
Kate Kelly wasn’t just battling the legislature (though she does that, too). She was taking her case to Heavenly Father. I mean, that’s amazing. The wonderful audacity of it. Get to know her. I think she might be president one day.
ROAR: Your work often includes multi-media aspects. Can you tell me more about that and why you like this format?
KARRIE HIGGINS: When I am composing an Intermedia essay, I don’t think, “How can I write this?” I think, “How can I get this into evidence?” I am interested in friction points and ambiguity. For me, it’s a forensic process: prosecuting a case, tearing it down. I play prosecutor and defense. I’m not interested in “proof.” “Proof” is boring. I’m interested in evidence.
Finding or creating the artifacts I use in my work is time consuming, grueling, and in its own way, a forensic reconstruction. I spend many hours filing FOIAs, tracking down and interviewing people, obtaining medical records, reading old newspapers, watching vintage commercials, conducting experiments, learning new things (like ink making, forgery, audio editing). For my book, I’ve been researching a lot about my two deceased brothers, and I have come to think of the people I interview as their prosthetic neural networks. I read a theory of “social prosthetic systems” by Stephen Kosslyn, in which humans distribute themselves over a network of people to “extend their emotional or cognitive capacities.” I took it a little further: What if I could connect the synapses again?
This process requires artifacts and multimedia. Memory is not textual. Experience is not textual.
It’s also a Disability Poetics. I have a learning disability called Central Auditory Processing Disorder or Central Deafness. It’s like dyslexia except with sound. I can hear, but I do not understand. Hang out with me, and it’s all what? what? what? I am also part deaf, which amplifies some of the effects of CAPD. I did not learn language & grammar the “normal” neurotypical way—through the auditory pathways. I learned it by memorizing pictures. I use my visual system for everything. This is not the same thing as saying I am a visual learner. CAPD is a specific diagnosis.
To me, images, videos, and other media aren’t separable from the text. They are not “illustrations.” They are … letters in the alphabet. I used to introduce or explain images, even though it felt weird. I thought I had to. Now I don’t. I’m just me.
I didn’t know I had CAPD until 2016. I always knew the way I understood language was “different,” but I couldn’t put my finger on it. Knowing has helped me embrace who I am as an artist.
I’ve become more and more fascinated with audio. I have attempted to convey to hearing/neurotypical people the experience of central deafness through layered audio pieces, which I edited mostly visually (and with a little help from my husband). I figure since my experience of sound is jumbled, it will come through in my audio production. Neurotypicals reject it, though. They won’t even try. In a recent video Intermedia essay, I got so many emails saying, “I couldn’t listen. It was too intense.” Or: “I started to feel like I was losing my mind. I turned it off.” But this is my experience all the time. This is how the neurotypical world makes me feel. And they can’t listen for 22 minutes?
ROAR: What does feminism mean to you?
KARRIE HIGGINS: I am kind of going through something with this right now. To me, it means alienation, loneliness, betrayal. So much of mainstream feminism leaves out — or is even hostile to — people with disabilities.
The other day, the Women’s March tweeted a link to one of my essays during an ally education thread on disabilities. I felt used. I honestly felt used. The Women’s March platform largely ignores disabilities except to talk about the burden of caring for us–disgustingly ableist language, even if the intent of paying women for caretaker labor is good. “Burden” is the exact word used by eugenics programs in the United States in the 1920s. Really? “Feminists” are going to call our care a “burden?” There are ways to advocate for caretakers that don’t denigrate disabled people’s humanity. It also seems to assume that women are caring for disabled people, but cannot themselves be disabled. It’s clear to me that the Women’s March didn’t expect disabled women to read this platform. They probably imagine us incapable of reading it.
Never mind disabled women are far more likely to be victims of sexual assault & domestic violence, live in poverty, be targets of police violence, and suffer dire consequences of Obamacare repeal. For disabled women of color and/or who are LGBTQ, the risks of many of these are even higher. Equal pay for equal work–great! But it does nothing for those of who can’t work. Are “feminists” going to stand up for disability benefits, too? How about eliminating the marriage penalty for Medicaid & SSI so disabled people can achieve marriage equality? What about fighting for accessibility at election polls? Many disabled people can’t vote! Will feminists fight for accessibility in workplaces? Accessible housing? In my quest for accessible housing, I might lose my PHD. The only affordable, accessible housing I’ve found is low-income housing, and they don’t take students. I doubt the Women’s March even knows about these issues, let alone cares about them. They didn’t even find them worth mentioning. Instead, they focused solely on caretakers, as so often happens. And here the Women’s March is tweeting my essay about inspiration porn! OK, but what about my essay for the online Disability March that called out ableist activism? That expressed my terror that feminists will leave us to die? Not a peep.
I’m not the only disabled activist pointing out these issues. I’ve discussed them on Twitter and elsewhere with others.
I am often trapped in my apartment complex because of accessibility issues. On Saturday, I got to go to a coffee shop for the first time since moving to Colorado in June. The accessibility here is that bad. I know more people in this area than in any place I have lived since my home state of Iowa. I’ve had one visit–one. Abled friends, many of whom call themselves “feminists,” do not come to visit, even though they know I cannot access their events, their houses. The isolation is depressing, but it’s also bad for me neurologically. My CAPD, my partial deafness, my pain, my ataxia & more — all progressing more quickly because the brain is not meant to live without stimulation. I can’t focus. I can’t think. Maybe I should call abled people the burden–see how this feels to them. I carry the burdens of their refusal to see me as human, of their inaccessible spaces, of isolation and loneliness because abled friends find it “too much work” to drive and see me. (Never mind my taxes subsidize their roads and the entire apparatus of the DMV, but I digress.)
Will the women of this march fly to DC in droves when the GOP guts the Americans with Disabilities Act, as they plan to do? Will they be there if disabled people have to do a Capitol Crawl again? I doubt it.
(After her initial interview, Karrie added: After discussions with disability activists, including the Disability March organizer, Ssonya Huber, the Women’s March has revised their platform to be more disability inclusive. Many disability activists still have objections.)
ROAR: What are some concrete actions that feminists with privilege could take to be more intersectional and inclusive?
KARRIE HIGGINS: Listen without formulating a response, especially if you feel defensive. It’s important to sit with reactions and question them instead of placing the burden on the other person to comfort you or help you understand. A lot of times, if I don’t understand something right away, I will if I sit with it a little while. But it is not the job of a marginalized person to help me understand. It’s my job. Usually, if you’re feeling defensive, it’s because you’re centering yourself. Center the other person.
Believe marginalized people about their experiences. Don’t offer alternative explanations. Don’t interrogate them. Awhile back, I was posting pictures on Instagram of inaccessible bus stops. An abled friend took it upon herself to explain to me how they were actually accessible. This is a remarkably common experience.
Read books by marginalized authors. Watch movies that don’t center abled white people.
Don’t confuse righteous anger with negativity. Labeling people as “negative” for calling out important issues=shunning.
Resist the impulse to give unsolicited advice. It’s another way of not listening.
Make spaces accessible.
In the disability community, we have a saying: “nothing about us without us.” I wish more conferences and organizations would live by this rule.
ROAR: What is the most rewarding thing you have ever done artistically?
KARRIE HIGGINS: The first time I saw the syrinx (hole) in my spinal cord, I thought, “I am too good at magic.” My whole process for years has been an epigenetic resurrection spell in an attempt to bring my oldest brother (who died in 2008) back to life. He had a spine like this. It was why he took so many pain medications. I mean, the holes in my spinal cord are caused by a neural tube birth defect called Chiari Malformation that makes my skull too small for my brain. My cerebellum is falling through the foramen magnum and cutting off the flow of cerebrospinal fluid. CSF pools in my spinal cord and erodes it.
BUT my Chiari wasn’t diagnosed until I was 39 and very sick from the air pollution in Salt Lake City. I went in for a routine brain MRI for my epilepsy, and my neurologist said, “Has anyone ever told you that you have a brain deformity?” I’ve been getting brain scans since the late 80s! Nobody ever found my birth defect. My syrinx wasn’t found until two years later during a c-spine MRI.
When I told doctors at the NIH, where I am participating in a study, they said, “I would love to get my hands on your childhood MRIs.” Me, too.
Did you know that a fetus initiates parturition by secreting surfactant protein-A and platelet activating factor from its lungs? It kicks off an inflammatory process, and labor begins. This inflammatory process resembles my asthma in the SLC pollution, the chemistry of which inspired a lot of my magic. I sometimes think I gave birth to my own birth defects—that I was going through some kind of rebirth there in SLC, initiated by my own lungs. And I did it in my brother’s image.
My brother’s spine got crushed in a factory accident. He was making the machines that harvest corn to make ethanol. I am facing ethanol injections in my L1 vertebra for a tumor (separate from my syringomyelia) that will eventually cause a compression fracture.
It’s the most radical of radical empathy. I know it sounds weird, but I’m proud of it.
Either that or the first time I made ink, forged a document, and aged it (for my book). Really, the same process, alchemically speaking.
ROAR: What does activism look like to you?
KARRIE HIGGINS: Art.
Does that sound cheesy? Romantic? I already won two curb cuts and a paved sidewalk because of my protest art. And I convinced an insurance company to cover my epilepsy meds because of my protest art (in part). Art works! Art matters. My activism and my art are not separable.
In some ways, this is a complicated question for me. I used to get out in the streets, even though I was vulnerable to police (and fellow protestor) violence and injuries with my disabilities. I got bullied and assaulted and shunned because I had to take precautions abled people didn’t have to take. I gave up on marches. I couldn’t trust “progressives.” Now I couldn’t march if I wanted to, and anyway, defining activism solely as street protesting is inherently ableist.
I am wrestling with it, re-assessing, re-defining. I file a lot of FOIAs, contact my representatives, check in on friends who are marginalized. I speak out on social media. I try to educate people one-on-one. Many abled “progressives” sneer at this form of activism. It’s the same old shunning as always.
ROAR: What next?
KARRIE HIGGINS: Right now, I don’t know if I have a “next.” When the ACA dies, I will die, too. (Unless my husband finds full-time work with benefits. So far, no luck.) Still, I press on. Slowly. I don’t have much energy these days. I have been studying William Blake’s etching technique, and I am embarking soon on etching copper plates. It has to do with my journey with the Mormons. Many sewing projects in the works from fabrics I designed for performances. Hoping to sneak into Iowa sometime soon for a project about growing up epileptic in a car city. A monster intermedia piece called Manic Pixie Epileptic
Karrie Higgins is an Intermedia artist & writer living in Boulder, Colorado. You can find her at karriehiggins.com.