When Being a Disabled Writer Means Being an Educator

The ninth chapter of the Gospel of John starts with the following awkward situation: “As Jesus was walking along, he saw a man who had been blind from birth. ‘Rabbi,’ his disciples asked him, ‘why was this man born blind? Was it because of his own sins or his parents’ sins?’” Jesus’ answer positions the disabled man as a divine teaching aid. “‘It was not because of his sins or his parents’ sins,’ Jesus answered. ‘This happened so the power of God could be seen in him.’”

Whenever I’ve wondered why I was born with Cerebral Palsy, my parents and friends have directed me to that passage. They tell I’m a “good educator” for “bodily differences.” Though those differences inspire my writing, I question their educational value.

I was not one of those children who felt compelled to write; the stories I made up always stayed in my head. Writing, the physical task itself, garbled my attempts at fiction with hand cramps. When I was younger, my time was devoted to homework and physical therapy. Quite frankly, I was too busy learning to live in my body to seriously consider writing it. I was, however, compelled to answer questions.

Picture the scene: you’ve known me, as some sort of background character (classmate, tutor, sidewalk acquaintance) for anywhere from half a second to half a decade. Eventually, you feel comfortable enough to ask, “So, why are you in a wheelchair?” Or, if you’re less polite, “What the fuck is wrong with you?” I’ll feel the need to rewind the tape and explain prematurity, oxygen loss, and specific forms of brain damage.

In elementary school, this question was so common that my introduction was literally, “Hi, I’m Alyssa—I was born with a birth defect,” to complete strangers. A less than perfect way to head people off at the pass. I know when those conversations are coming; I have a script prepared—edited biannually like my CV. Still, I hate them. They’re silted, my jokes are stale, and you are never going to be the first person to ask me if I’d rather be dead. I started writing because I wanted to stop talking. I wanted to end the awkward conversations, control the message.

As a college sophomore, I finally had the chance to take a beginning poetry class. We wrote mostly pastiches of famous poems; after reading William Carlos Williams’ “The Red Wheelbarrow,” I wrote a short, imagistic poem titled “The Red Wheelchair.” In these pieces, my speaker was always seated in a wheelchair. This was an easy way to make my assignments more authentically mine within the strict bounds of the works I was imitating. In another beginning creative writing course, I had the chance to write a personal essay (this time in the style of David Sedaris) about the time I was the only person at a trivia event to know the date the Americans with Disability Act was passed into law: July 26, 1990. The moderator blurted, “Of course you’d know that.” He later apologized for what that emphasis implied.

When the piece was workshopped, everyone called it “enlightening.” They all learned something about a facet of humanity they rarely had to consider. Great for them, I suppose. What I enjoyed was the shotgun blast of information this writing allowed me to convey. Here were 18 fewer individual conversations I would have to respond to by rote. Have a question on how I get ready in the morning? Read this poem. Oh, you want to know about workplace accessibility? That essay’s on the bottom of the stack. I was creating a book length FAQ by accident. This is what I call the “John 9” problem; I developed a style aimed at the able-bodied.

Now, in a pragmatic sense, writing towards the confirmed majority of my readers is not problematic. After all, while disabled people are the largest minority the world over—they are still a minority (disabled writers even more so).

And in terms of profitability, this might be a positive. But, it presents some major issues. Most of the cues that make my disability obvious are visual; they disappear when mediated on a page. So I must be explicit about it in black and white when full color is not an option. I drifted into poetry because the genre allows for the condensation of concepts. The lyric can do heavy lifting. If I want to illustrate the repetitive nature of questions regarding my employability, I can write a poem in the style of a looping PERL computer code. If I were to try for the same message in prose, I’d have to boringly repeat myself to convey the mechanistic feel of these interactions. The formal metaphor can do what plain prose can’t. And in less space, which prevents hand cramps. So my choice of genre is influenced by my physicality. But, even in poetry—I don’t want to write about seasons or love. I want instead to mock a Splenda-voiced woman who mistook razor slips on my shins as an honest suicide attempt and told me “It’ll get better.” Verse helps me get back at her and say more generally: Please, for the love of god, have some tact. A disabled body is not an open mic.

Here’s the thing, though. I hate teaching, repeating myself for kids texting in the back—it’s seemingly fruitless and emotionally exhausting. I reuse—and sometimes literally copy and paste—the introduction to my body’s parameters. My balance, for instance, will almost always be described as shitty. I will bring up how slowly I type in situations where walking’s irrelevant. My work mostly turns on busting stereotypes related to disabled life. This is Disability 101 stuff; it’s fascinating only when one doesn’t encounter disabled people in real life. The fact that people still learn wheelchair basics from me is depressing. I am so surrounded by disability and disabled people that I forget I might very well be the first disabled teacher—or, hell, person—someone’s ever met.

Maybe my trailblazing status will change along with reform efforts to mainstream disabled students out of sequestered special education departments. But, even then, educators and reformers sell parents on letting disabled students into their children’s typical classrooms by promising that students with disabilities will teach their classmates about diversity and empathy. Otherwise, who would want to deal with a student who differences invariably take up valuable time and resources? Disabled existence becomes an education early on—preschool, for me.

Perhaps an illustration is in order: there is a note to remember your poems must stand on their own because readers will not know your body on most of my MFA workshop poems. Like, 40 out of 50 most. A professor of mine once set aside a lecture to discuss hair in the poetry of African American women. She asked the class to consider the steps we imagined accompanying the simple phrase “I wash my hair.” Wet, lather, rinse, condition, rinse: the daily repetition. Then, she blew the minds of the majority white classroom (myself included). That’s not how these women do it. Black hair care varies greatly in amount and types of products, as well as in frequency and methods.

Her example prompted a heated discussion about when a writer might be free to go with this kind of shorthand (dragging along all problematic assumptions) and when they should break down how they actually do things. When should education be an explicit goal within a piece? And what is the line between education and exploitation?

Audience awareness is a major part of any writing, and thinking Am I the only person who wants to read this? helps me craft with some universality. But highlighting how I differ from default makes me feel like I am writing for voyeurs. I get asked about how I have sex more often than I get asked about how I avoid blood clots when I sit for such long periods. Both are private matters, though people feel entitled to answers regardless. And writing to satisfy curiosity is yet another disability stereotype. Disabled writers are expected to discuss disability and its associated assumptions. Education and disability rights activism are such an assumed requirement for disabled writers that Disability Literature syllabuses must remind students that “disabled writers do write about subjects beyond their bodies.”

Of course, I write what I know and what I am curiously obsessed with. My movement through an inaccessible world is currently both of those things. But I am also in the bizarre double bind of fulfilling a stereotype in the process of busting others. I write the awkwardly detailed stuff down so that I don’t need to say it out loud again and again (though I still do). I want to build empathy through my work so that my work is no longer needed, and I can get out of my self-made pigeon hole. But I can’t build said empathy by asking my readership to injure themselves and/or spend time in a wheelchair (if they don’t already). When physical or experiential empathy cannot be assumed, education must be a little more explicit to be comprehensible.

The most visible narrative of disability is one of overcoming. A standard college admissions essay: I had an illness or injury; I worked through it in rehab; my health is no longer a problem. These pieces end in either normalcy or death and mourning. Even essays about a chronic disability, like my own, are generally also about overcoming—in these cases stigma, stereotype, and sabotaging pain. If I reduce my own writing down to a generalized template, I can trace how it fits into this narrative.

So, could I write about other topics and avoid this repetition? Yes, I guess. But, I’ll be blunt, I have scarce few true stories to tell where I might write around my disability. My brother is also disabled, so even exploring sibling dynamics is fraught. And my more academic work has mostly pointed out stock uses of disabled bodies as moral barometers in literature, like Tiny Tim for Scrooge. I’m always navigating the position of being an antagonist or educator of my audience, which leads to defensive writing. In short, I get preachy—classic I-know-something-you-don’t-shut-up-and-listen.

Personal writing often includes vague domestic hints of a writer’s life. Lines like I realized this while making breakfast is the sort of phrase passed over in most writing, but I’ve had my culinary comment underlined with How? in the margins. Explaining such alternative approaches to the mundane derails everything else.  That’s the real problem. I have been trained to answer questions, not allow them to sit—forlorn and confusing— on a page. I can never rely on shorthand or assumptions. Is this what separates “minority writers” from regular writers? One is asked to explain and the other doesn’t have to? There is power is not having to explain incidentals.

Augustus Waters, a character in John Green’s popular YA novel The Fault in Our Stars, asks the protagonist for “her story” but then stops her in the middle of a detailed explanation of how her lung cancer metastasized. He doesn’t want her “cancer story,” he says. “Don’t tell me you’re one of those people who become their disease.”  But, he has cancer, too. He already knows hospitals and treatments—he knows her shorthand. I wonder if I could write my life without my wheelchair. My story isn’t “prematurity induced brain damage,” true. But it’s a part of it. I chose my colleges because they were near home and I could easily call my parents for help when my electric wheelchair died in the middle of the street. Life writing that didn’t acknowledge such things would be fiction for me, and I have enough able-bodied characters on my Kindle. My life outside of disability is unavoidably shaped by disability. Just don’t ask me how. Assume I’m naked under my clothes, like everyone else.