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This essay is excerpted from Golem Girl by Riva Lehrer (2020), published by One World.
* * *
One of Us
Chicago, Winter 1996
“I’m sorry, what?” I’d been examining the joystick on Susan’s power chair, idly imagining an arcade game featuring pixelated wheelchairs. “You want me to join a club?”
“We meet Sunday afternoon. You gotta come.”
“It’s nice of you to ask.” I sipped my oolong. “But no, I’d rather not.” I’d met Susan Nussbaum years ago, in 1987, when our friend Achy Obejas took me to see She Always Said, Pablo at the Goodman Theatre. The director, Frank Galati, had defied convention by casting Susan as Gertrude Stein. We’d only recently struck up a true friendship. I was smugly pleased with myself for finally making a real disabled friend, but that, I felt, was sufficient. Joining something called the “Chicago Disabled Artists Collective” was a very long bridge too far.
Susan brandished a piece of sashimi like a tiny club. “Not giving you a choice, Ree — you need this.”
Stall. “Tell me again, who’s in the group?”
She raised a sardonic eyebrow. “Who cares? You’re coming.”
* * *
Sunday afternoon, 2pm, a conference room in the back of Victory Gardens Theater. Susan waved me to a seat by her side. Of the eight or 10 people arranged around the table, I recognized only one, Bill Shannon, a fellow student at the School of the Art Institute.
The tabletop bloomed with torn bags of Doritos, packs of Chips Ahoy, and shiny cans of seltzer. I smiled, plucked up a cookie, but my legs remained tense as a jack-in-the-box, ready to pop me the weasel outta there. Figured I’d give it a few minutes, excuse myself to the ladies’ room and neglect to come back.
But then I noticed a tiny thing. A superficial thing. A crucial thing. A me thing.
What I saw was that everyone was well dressed.
For years, I’d only seen people like me in the hospital or in waiting rooms — demesnes of the tracksuit, the polyester muumuu and tie-back johnnie, so like the clothing I’d had to wear as a kid, camouflage garments that could have done duty as duck blinds.
These people had zero interest in hiding. The woman sitting across from me was absolutely resplendent in a purple suede jacket and orange feather boa; even her wheelchair was stylish, a low, open design like an Eames chair on speed. A woman at the far end of the table was wearing an actual Red Riding Hood cape. Next to her sat Bill Shannon, outfitted in hip-hop regalia. There was more dress-up in this room than in an entire season on the BBC.
None of it was haute couture. It was style, and a refusal to flinch from being looked at. The message was loud and clear and it was “LOOK. WE EXIST.” I’d expected to meet a few of my people, but holy cats, these were my people.
I was hooked by the attitude, but what made me stay was even more unexpected: I found myself actually laughing. I should have known, as a Jew, that humor grew best in bitter ground, but when it came to disability I’d been a stone-cold curmudgeon. I heard a guy at the far end of the table talking about a recent morning when a commuter had dropped money in his open coffee cup, certain that anyone in a wheelchair must be begging for alms. Sometimes strangers had chased him for blocks, pleading that he allow them to perform an impromptu faith healing. Soon, everyone was outdoing each other with tales of awful behavior.
A word bobbed in and out of the crosstalk like a cork in a bathtub: “crip.” Susan explained that it was a reclaimed word, like “queer.” I loved its hard, palatalized edge, both weapon and protection. Crip. Crip. I scooped it into my mouth, that night’s great prize.
Susan was right. I did need this. She’d invited me into our very own Algonquin Round Table.
The collective wasn’t all jokes and Cokes. A lot of what was discussed was political, though a politics that was, at first, nearly incomprehensible. Members spoke a shared language developed through activism, through protest marches and Disability Rights organizations, a universe of advocacy I knew nothing about. I didn’t even know that there was a political term for being stared at: This, I learned, was called “aggressive ableism.” I’d never heard that term: ableism. A diagnosis not for my body, but for my life.
When I was a kid, people said “handicapped” or “crippled.” No one said “disabled” unless it was “He was disabled in a terrible car accident.” I whispered, “What?” to the guy to my left; he explained that Disabled people with a capital D were engaged in a wrestling match over what the hell to call ourselves. Some opted for “person-first” language, as in “I am a person with epilepsy” versus “I am an epileptic.” I wasn’t sure if I was a person with a disability (a PWD) or a disabled person. Did I have spina bifida, or did spina bifida have me? We agreed that terms like “handi- capable” were odious, mealymouthed smoke screens. I thought, You can call me “differently abled” the day I wake up with bat wings and gills.
When I got home, I looked up “cripple” in my mother’s cracking, leather-bound dictionary. The root of “cripple” is crypel, an Old English word meaning “to creep.” “Cripple” is both noun and verb, as if impairment is contagious. For me, “cripple” didn’t have the self-possessed snap of “crip.” “Gimp” was another word in the reclamation rankings; the dictionary posited that it was a corruption of “gammy,” from Old North French gambe, or “leg.”
Even the word “disabled” was up for grabs. According to the collective, “Disability” did not refer to medical status. Rather, “Disability” or “Disabled” (with a capital D) was the political term for our identity, while “impairment” described the physical, cognitive, or psychiatric conditions of our body-minds. My impairment was spina bifida, and/or its neurological and orthopedic effects. Our true obstacle was not how our bodies or minds functioned; it was having to wrangle with physical and social environments that ignored our existence. I’d always accepted that I wasn’t strong enough, tall enough, fast enough, enough enough for the demands of the world. I’d never considered that society derived benefits from ignoring the needs of the Disabled. Self-blame absolved the normate world for its failures of justice.
I had spent years fighting against misogyny, homophobia, and anti-Semitism, yet I’d so easily believed that I should be ashamed of my body that I’d never understood that shame was both the product of and tool of injustice. I hadn’t just needed Disabled friends. I’d needed friends who could give my experiences context and analysis.
Yet in the thrill of these discoveries, I didn’t reckon with the fact that this new consciousness wouldn’t stop oppression from being painful. All these years later, I’m still wounded every day. But the injuries heal faster, and fewer things get through the pervious armor I have built over the decades.
At the heart of disability is imagination. We rethink every act of daily living, not to mention the obligations of a career. Imagination rules our lives. Even after we’ve reinvented how to shop, how to get to our job, how to find a job, our body decides that what you could do on Monday is no longer doable on Wednesday.
Rethinking defined the work of the collective. I admired the members so much that I could hardly believe that they — like me — had been told that their art was unpleasant and unsalable. The mainstream is only ever interested in the eternally popular Overcoming Story, in which a cripple (of whatever variety) transcends the effects of their impairments. Make a movie in which a quadriplegic (played by an able-bodied hunk) free-climbs Kilimanjaro with his teeth, and clear room on the mantel for your Oscar. But realistic stories — starring actual crip actors — were considered to be box office poison. Little wonder that collective members wrote and produced their own material. And it was no accident that almost all collective members were performers: constant public scrutiny does tend to turn you into a de facto performer.
The mid-’90s were a transitional time in terms of mass-media representation of Disability. There had never been a lack of shows with crip characters, from movies like Wait Until Dark, A Patch of Blue, and, of course, The Miracle Worker; Rain Man, Born on the Fourth of July, My Left Foot, and Forrest Gump had all been huge successes. Television had had Ironsides and Longstreet; more recently, there had been The Facts of Life, Diff’rent Strokes, Life Goes On, and LA Law. However, almost all these roles were played by able-bodied people. Almost all these characters were innocuous, unthreatening, and easily acceptable. The few actors with actual disabilities included Geri Jewell on The Facts of Life and Chris Burke on Life Goes On. On one hand, it was an enormous breakthrough for disabled people to play Disabled people — and not as much of a change as one might expect. These roles were written to demonstrate that crips could be accepted into the mainstream. They weren’t aimed at the Disability community, in order to foster identity, encourage cultural development, or reflect the complexity of our experiences. I can only think of one actor who embodied rage, sexuality, and self-definition, and that was Marlee Matlin in Children of a Lesser God. So when I joined the Disabled Artists Collective, this was all I knew (with the exception of Susan Nussbaum’s work). There was a rich, nuanced world of depiction in every conceivable medium, but not in the mainstream arts.
Lack of access cut us off from success in the wider world. Access to venues was crucial. Most Chicago theaters had neither accessible stages nor accommodation seating. The audience didn’t fare any better. No wheelchair seating, no ASL or audio description. Accommodation was considered too expensive for small venues and unnecessary for large ones. Performance venues complained that disabled audiences never showed up. Weird, huh?
Art school was built on the conviction that all art was made by able bodies: for example, I was expected to stand up for the duration of our six-hour painting classes (I had to raise holy hell to get a table and a chair). Lockers were inevitably several floors away from our studios. The total lack of disability parking prevented my ability to even get my gear to school.
In addition, most Chicago galleries were located in old warehouse buildings reached via steep flights of stairs. Even if I could climb up, I couldn’t invite friends, fellow artists, viewers, critics, or collectors with mobility issues. Professionals still lectured me against “ghettoizing” myself (their word) and damaging my career. My art was “therapy,” rather than an engagement with the history of portraiture.
The purpose of the collective was to workshop our performances or to critique visual work, but there was a fundamental divide as to who we wanted our audience to be. Some believed we should develop Disability Culture as a crucible in which we could define ourselves for ourselves. Others were focused on overturning the prejudices of the mainstream. I didn’t know yet where I fell.
It was my third meeting with the group. I was snacking during a long argument over Jude Law’s character in Gattaca and falling into a cookie coma. Just before blinking out altogether, I glanced at Alana Wallace, the dancer sitting to my left, and my chocolate-addled mind flashed to the night we first met. I remembered the silver-shot hair, the feather boa and purple suede jacket. Then, as if laid on top of that vision, I saw the fur-collared, slashed-sleeved, ringleted Albrecht Dürer in his “Self-Portrait at the Age of Twenty-Eight.”
The next few minutes were hallucinatory. I saw Hans Holbein in Mike Ervin’s solid jaw; Rogier van der Weyden in Anna Stonum’s heart-shaped face; Leonardo whirlpool-swirling in Susan’s mop of curls. Memling, Petrus Christus, Velázquez — each member evoked a different Renaissance portrait. I fiercely wanted to see a gallery filled with portraits of luminous crips.
I suspected I was going to have to make them myself.
* * *
I had always loved the portraits of the Northern Renaissance, brimming with furs, jewels, veils, and torrents of ringlets. Such details demand an investment of time, and time tells us that the subject is worth knowing. The intensity of detail bestows a gravid timelessness; centuries fall away, until nothing stands between us and a face from long ago.
The faces in Renaissance paintings belonged to the wealthy, privileged elite of their time, but the collective members were my elite. Notwithstanding my enthusiasm, I still had to contend with our shared experiences of being looked at. I was quite aware of our histories of Awful Encounters, of comments we’d gotten on the street, in stores, in waiting rooms, as strangers tried to strip away our surfaces and pry out the diagnostic meat they craved.
Why are you so ugly?
Do you think you were born THAT WAY or did God make you THAT WAY?
Are you gonna die?
If I had to use a wheelchair, I would kill myself. If I looked like you, I’d kill myself.
Were you, like, one of those kids from Vietnam who was forced to test land mines or something?
Are you a midget?
Well, you’re a beautiful handicap! A handicap like you, I don’t mind sitting next to at all.
I believe in God and I believe that God heals, so I am going to pray for you.
Can you talk? (Or they only talk to whomever you’re with.)
Is she a moron? Can you have sex?
I support the handicapped because I believe in karma and wouldn’t want to come back disabled.
It all began with staring. The aggressive gaze of the examiner. My problem was that doing a portrait entails hours and hours of looking. A portrait was staring. I had to find a strategy or I’d subject my collaborators to more miserable scrutiny. It was trial-and-error time: I resolved to start with the collective member who seemed like the toughest cookie of them all.