Within the broader realm of literature featuring characters with disabilities — #DisLit and memoir — #CripLit presents an understanding of disability using the lens of the social model. It eschews disability as a narrative device and shortcut for conveying sentimentality, heroism, and disaster to readers.
1. In #CripLit, at least one main character has a disability and the narrator is aware of its political dimension.
Like ancient Rome, San Francisco was a city of hills and, with few exceptions, honored its dead by housing them firmly and in perpetuity outside its official boundaries. Gretchen Lowe, age 35 at the 90’s midpoint, was not dying, as she was at pains to point out more frequently than she would have wished. She had muscular dystrophy, a distinction often lost on those who equated strength with muscle mass, consciousness with cognition, and worth with productivity. A growing chorus assumed this would be her preference, death before disability, rather than the indignity of grappling with that terminal condition from which the chorus-members, themselves imperfect, suffered: life that is both enviable and bleak, and always, always unfair in distribution of the same.
2. In #CripLit, living with a disability can be described through the narrator’s point of view, not just the character’s, and this can provide stylistic opportunities.
…a crimson-robed Gretchen with mashed fair hair, droopy socks on feet lightly brushing the floorboards, and a chest that rose and fell with each breath, an extra blurt of effort on her part, and one that, on every third beat or so, sounded as a snort of sorts of satisfaction, though whether from the pleasure of the text or the breath was unclear. Her hands have already been described. Now their service was largely to lie underneath the book on her lap, slightly, only slightly, more sophisticated instruments than the bony wrist-stalks from which they bloomed. Her fingers were as weak as petals (are petals weak?), their regressive contractures defying nature by moving to bud from flower. The right hand had not grown into bud as swiftly as the left and its index petal (not itself so weak, more a member of the hyacinth’s waxy-stiff brigade, named for Apollo’s beloved discus-thrower, fatally brained by the same, and immortalized as metal to the petal) turned the pages deftly enough without needing to enlist the long-enfolded thumb.
3. In #CripLit, a disabled character can be deeply flawed, unlikable, or foolish, and is not obligated to be an advocate, inspiration, or role model in fictional clothing.
Moira said, “You’re making a mistake. Exercise is hazardous to your health. Look what happened to me. An afternoon of ice-skating, a lifetime of pain.”
“You don’t seem to be doing so bad, Moira,” Gretchen said, slowly bending into the counter.
“That’s because I’m a frigging trouper. Plus I can afford to go to any doctor I want. And I refuse to go light on my narcotics to help a government agency meet its war on drugs goal.” Moira put a pinwheel hat on Gretchen. “There. Everything must go.” Gretchen inclined her head toward Moira so Moira could set the propeller spinning on the beanie. “Thanks,” Gretchen said and started stretching the other leg.
“Aren’t you going ask why everything must go?”
“I’m closing the Marie Antoinette. I’m done with all the head stuff. Della and I have just been through a bad patch. Actually, I didn’t know about it until she told me the other day. But we’re solid again and I’ve learned my lesson.”
“What was the problem?” Gretchen asked oh-so-casually. She hoped it didn’t have anything to do with a flirtation and Zenith.
“I’m not sure but it’s never going to happen again. And it finally showed me what the Marie Antoinette was always supposed to be.”
“You didn’t know either?” Gretchen was curious to find out about the Marie Antoinette because she’d never understood why Moira had chosen old Marie in the first place.
“Aren’t you going to ask me what my lesson was?” Moira asked instead of answering Gretchen’s question.
“Whudya learn, Moira?”
“Two things. One, the way to a lady’s heart is through her stomach not her mind.”
“How did you learn this?”
“When Della told me we had to talk, she had just polished off a cheesecake and there was a sack of cinnamon buns still to go. Turns out my girl likes her baked goods.”
“You didn’t know that?”
“I certainly had never seen her eating with both hands.”
“What else did you figure out?”
“When two people are meant to be together, you can’t fight fate. When I came in, Della put the serving spoon and the bear-claw down and said, ‘I give up. And if I’m giving up, I’m going to at least eat as much as I want.’”
“That’s quite a romantic story.”
Moira nodded happily.
“Oh, yeah, and she’s pretty much deaf,” she added.
Moira snorted. “That’s what I’ve been getting from her for years. When she would answer at all. It explains a lot.”
“It sure does,” Gretchen said, thinking of Zenith. Yow.
4. In #CripLit, an anti-hero can have a disability that is integrated into their character.
“I became bitter for a time. All of my hard work, pain, and venturing into the unknown to express the central utilitarian values of comfort, ease, familiarity, that the quality of life is equivalent to the quality of consciousness, had gone for nothing. I received a letter around that time from the doctor who treated me after my mountain-climbing accident. In reviewing his records after a lawsuit was filed against him, he found a small tumor in my brain x-ray he had missed before. Needless to say, he was quite concerned. This could really jeopardize his chances in the pending lawsuit. Negligence, how appropriate. I returned to see him and he removed the tumor immediately. This episode raised two interesting points. First, the tumor was not actually connected in any way to my accident. It could have gone undetected for years until its bulging dimensions caused me to black out, go into seizures, or compose full-length operas in the time it takes to heat a Lean Cuisine. So you might surmise that this ostensibly bad bit of experience – losing my grip on Capitan and becoming quadriplegic for nearly three days – was actually to my advantage. I had thought my only luck had been when the neurologist, a bottom-half sort who thought ‘futile care policies’ were something vassals brewed up for useless serfs, showed up for one more pin-prick exam before they pulled the plug as my eye-blinks were ordering them to do. I would have fallen off the bed in shock when I felt that jab in my left thigh if I’d, you know, been able to move. But as Doc Missedthetumor observed, it’s a good thing these neurologists rush from patient to patient or my wishes would have respected me right into the grave.
“An even stranger occurrence followed, though. I was awake during the surgery to remove the tumor, as is the normal procedure. They were doing a sort of color commentary to keep me posted on what was happening, probably going into too much technical detail because they thought the ‘Doctor’ before my name meant I was one of them. Just after the lead surgeon announced a clean excision, I lost all interest in the nature of consciousness. I couldn’t have cared less about the rights of animals, or people, or the distinction between sensation versus perception. If you told me, ‘The end justifies the means,’ I would have said, ‘Whatever.’ I started noticing how my personal experience was horning in on my objective arguments. I was filled with a desire to read Nietzsche, which wasn’t odd except that what I wanted was to read a few pages and then fight in public places about what I’d read. One day, I thought, ‘Well, that’s just the way it is,’ and it hit me. I wasn’t a philosopher anymore. I had become merely philosophical.
“Needless to say I was useless as a teacher. After a couple of years, my department head noticed the negative student evaluations – though they thought I’d make a great undergrad and had tremendous potential if I’d only apply myself – and called me in. I came clean. Confessed I had a condition that disabled me as a philosopher. It felt so good to finally be open about it. Hobbs was kind, asked me how I was doing, told me he’d suspected something was wrong but felt it was a private matter best left unremarked. When I assured him I had stopped struggling and was learning to live with my limitation, his demeanor changed. He became more officious and said he needed to reflect upon the situation. We would speak soon.
“We never spoke again. The university sent me a letter of separation, stating that because I was unable to perform the essential tasks of my position, I was relieved of all teaching duties and publishing expectations. Because I had tenure they couldn’t dismiss me; they recognized I had a discipline-related disability that was beyond my control. I was welcome at all social events and meetings, but they could not reasonably accommodate me and my take-it-as-it-comes reactions. The real issue, of course, was liability. If word got out that I wasn’t harping on distinctions between being and Being, or my bioethics class was questioning its own preconceptions about ‘happiness’ or ‘personhood,’ rather than debating how many days a disabled infant’s parents have to decide whether to end the child’s life, those parents might start to ask why they were pouring money into a philosophy education and getting nothing more than sociology.
“Naturally, I sued the university. Naturally, I lost, it being a disability case. I was left with no career, a shit-eating dog, a crap-happy cat, and an apartment I could barely afford after the lawsuit. So I took every penny I had, hired the most cutthroat attorney I knew (a former student of mine, actually) and sued the bejesus out of Doc Missedthetumor.
“This time I won. Well, settled big. Personal injury always has an edge on individual rights. Doc Missedthetumor quit medicine and opened a one-hour photo where his film-reading skills were finally in an appropriate environment. Doc claims to be a much happier man now, after me dragging him through the mud. He told me this by saying I ruined his life. He even threatened me, a true sign of our bond. He warned me that the tumor could grow back, that it may already be pressing on another lobe and distorting my thinking in some new and possibly unsavory way. He opened my eyes to what I’ve come to call Transcendental Misanthropy. I keep his letter to me as a testimonial, in case I ever need to file a restraining order.”
5. In #CripLit, the story does not seek to educate the reader about the mechanics of living with a disability and does seek to describe a fullness of experience, whether wholly or partially imagined.
And the door was locked.
She stood there, watching the gray-blue paint and listening to what was happening from within. At first, nothing. Then a murmuring confusion, then a rapid rise in decibel levels, quickly becoming Frank’s singular baritone summoning Gretchen. It didn’t occur to anyone that it was anything but an accident.
She waited and then knocked to get their attention.
“Hi!” she called. She had to knock harder because, as usual, they were still talking. “Hi, everybody! Are you ready to start the meeting?”
Several voices told her the door had accidentally become locked.
“Yeah, I know,” she said cheerfully to the door. “But it’s funny you said ‘accident.’ We’re going to get started with our inservice on the Dignity Initiative. Rather than have you just sit and listen, I’ve set up something a little more interactive.”
Martha interrupted her. “Dear. If I may. The door is still locked.”
This sentiment caused a swell of sound.
Gretchen felt a twinge of guilt. Martha was a nice lady, a retired nurse. And she had finished that beer awfully fast.
She cleared her throat. “Look. Your letter to me said we have to take this funding. I don’t agree. All right then. Diapers are good enough for homeless people, try them yourself.”
Now they were shouting at her to open the door, and it got fiercer when they realized she’d gotten them in there without any of their stuff, including their cell phones. Two women pleaded they needed to call their children. Frank ordered her to open the door.
Something heavy sank to the bottom of Gretchen’s spine and it anchored her to her spot in front of the door. They had committed the clinic without even discussing it with her.
“Gretchen, is this really the way to make your point?” It was Ruby. Ruby had the voice of a seductive hostage negotiator. She was a social worker.
“Do you go along with this, Ruby?” Gretchen countered.
“With what, Gretchen?” Keep her talking, obviously the plan. There was a scratching on the other side.
“Expecting poor people to use diapers instead of bathrooms. And calling it dignity.”
Ruby’s voice was even. “I may not have thought it through sufficiently.”
“Do you want to hear me tell you to grab a diaper right now? Is that something that would work for you?”
“No, it would not,” she sighed. “You’ve made your point. Now please open the door.”
“I would like you to express that thought to your peers first. I would like you to take leadership on this issue.”
There was a hurried exchange and an even faster promise that the clinic would not be part of the Dignity Initiative. Gretchen opened the door and they streamed out. Only three people actually needed to use the bathroom. No one seemed angry once they were released, but though she tried to hide it, Gretchen was nervous now. She wasn’t much worried they would go back on their promise, she just guessed this wouldn’t be the end of it.
She approached each of them though and apologized for such drastic action. Most laughed it off and said it took them back to sit-ins and rallies. The meeting agenda was forgotten as they finished the snacks and talked about the good old days. Gretchen found Martha sitting apart from the others in the waiting room.
“Well, aren’t you the rabble-rouser today, getting us off our collective behinds,” Martha laughed.
“Yeah,” Gretchen said. “See –“
“The thing is,” Martha interrupted. “You don’t know that I know about these things.” She leaned in. “I’ve been using them for years.”
“Oh.” Gretchen felt awkward. “I didn’t mean they were bad…”
“I know that,” she said. “The trouble is, we can’t really talk about it. Or I can’t. It’s just so, it’s just so demeaning. It shouldn’t be but it is.”
“If you could just explain how it’s one thing to need diapers but another to make people use them because we’re too cheap to have bathrooms,” Gretchen said. “How it’s segregation with a stay-dry liner.”
Martha whooped. “Oh, that’s very good. But this is very private and I have to ask you to keep it a secret. Really, you won’t tell anyone?”
“Of course not,” she said. She knew how to make that promise. She’d made it to — how many? Too many to count. The same people she could therefore never mention when arguing for better access and getting the same old response – “But it’s a lot of money to benefit so few people.” A few? If Gretchen’s experience was any indication, there were far more than a few people quietly passing as nondisabled. Quietly asking her to please not reveal what they had in common with her.
But she couldn’t argue that all would be well, that they wouldn’t lose their jobs, if people knew the specifics of their imperfection. She couldn’t argue. And as she did when people said things to her like “of course” you end a pregnancy because of a genetic abnormality, she tried not to take it personally. And failed.