Tag Archives: disability studies

The Physical is Political: An (Uneasy) Case for Disability Studies in the High School Curriculum

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At the risk of taxing, annoying, or boring you, dear reader, I’m going to go to that well again. I’m going to talk about my arthritis (again). I’m going to write about arthritis (again) because, as Blackburn (2014) argues, “a writer is obliged, both personally and politically, to write about, and thus to name, that which others use to oppress us” (p. 54). In this discussion, I’d like to explore my identity as a person with arthritis and my identity as a teacher, as well as the efforts I’ve made to keep those identities somewhat separate. I also hope to explore the feasibility, implications, and emotional risk of bringing those identities together–that is, to be a teacher with arthritis teaching students about disability studies.

Now, I want to be careful and explicit here: I do not, generally, go around feeling oppressed. As an educated, white, middle-class woman, I benefit from my race and class privilege regularly. As I’ve declared elsewhere, I have an ambivalent relationship to the label “disabled” because of the erratic-but-progressive nature of my illness (rheumatoid arthritis). Nevertheless, I have paid my entry fee, whether I wear the badge or not. The abbreviated inventory, shared here only for the purposes of establishing my “crip cred”:

The little boy in Target who harangued his mother, at top volume, about me: “What is wrong with that lady’s legs what is wrong with that lady’s legs mommy mommy mommy what is wrong with that lady’s legs?”; the man at the bar who asked, “Why are you walking like a cripple? Are you a cripple?”; the car full of boys tearing through a stoplight as I limped across who hollered, “Gimp!”; the 7th-grade P.E. teacher who said, in front of the class, “It’s a shame your body is falling apart at such a young age” and later in the year accused me of making the whole thing up; any number of strangers whose choice of conversation-starter is “What is wrong with you?” There. That’s out of the way. Further references available upon request.

The above list should give you some sense of the ways in which people with disabilities are “dehumanized, that is, made less human by having their individuality, creativity, and humanity taken away, as when one is treated like a number or an object” (Blackburn, 2014, p. 43). And my list is relatively mild. I want to revisit that moment in Target for a moment because I was struck by how similar it was to Fritz Fanon’s attempt (as cited in Rosaldo, 1994) of the “social experiment of trying to ignore his skin color. When he envisions himself as a neutral figure in a public place, his reverie is interrupted by a white child who notices him” (p. 188). The “frightened” child calls for his mother and, as he cowers from Fanon, repeatedly yells “Look, a Negro!” (as cited in Rosaldo, 1994, p. 188).

Certainly some profound differences exist between Fanon’s anecdote, taking place as it did in the 1960s and transpiring between a black man and a white child, and my Target episode, which took place in 2004 between two (three, if you count the mother, who did nothing) white people. There was not the same power differential between me and the child who called me out as between Fanon and his tormentor. However, I would argue that the child so bothered by my legs, like other people (not just children) I’ve encountered, was motivated in good part by fear: fear of a nonstandard body with its scars, lurching gait, curled digits.  Like Fanon, my reverie was also interrupted. I thought I was buying a greeting card on my way home from work. In this moment and others, by daring to go about in a troubled body, I was jarringly yanked from the personal to the public, asked to answer for my body’s wrongness, to sate strangers’ curiosity, and to assuage others’ anxieties. Just as the child came to his experience with Fanon “not as a blank slate but already filled with stories that caused a fear of black people” (Rosaldo, 1994, p. 188), people enter interactions with disabled people preloaded with assumptions, stereotypes, and fears.

As Nancy Mairs (1996) writes, “most non-disabled people I know are so driven by their own fears of damage and death that they dread contact, let alone interaction, with anyone touched by affliction of any kind” (p. 100). Fear, then, creates a chasm of perceived difference, a firm Othering of the disabled person. Mairs (1996) writes that “the people who seem most hostile to my presence are those most fearful of my fate. And since their fear keeps them emotionally distant from me, they are the ones least likely to learn that my life isn’t half so dismal as they assume” (p. 102). Interestingly, fear of disabled people doesn’t always present itself as cowering or apprehension. In some cases, nondisabled people attribute serenity, perseverance, or heroism to a disabled person, but the end result is the same: the disabled person is made of something else, cut from a different cloth, than the nondisabled person. Mairs (1996) writes that “admiration, masking a queasy pity and fear, serves as a distancing mechanism” (p. 32).

This distance allows nondisabled people to relegate disabled people (and their feelings, opinions, characteristics, quirks, flaws, and failings) “to an other, safely remote reality, [rather] than to risk identification of their own lives with a life that dismays and perhaps even disgusts them” (Mairs, 1996, p. 32). It’s tricky, because, like “flattering stereotypes,” this distancing sometimes appears respectful, complimentary. The saintly cripple with the power to teach you how to appreciate all you have is not so different from the trope of the “Magical Negro,” a “black character–usually depicted as wiser and spiritually deeper than the white protagonist–whose purpose in the plot [is] to help the protagonist get out of trouble, to help the protagonist realize his own faults and overcome them” (Okorafor-Mbachu, 2004, para. 1).

At the independent school where I teach 10th-grade English, our students explore and seek to understand the experiences of marginalized people: Across the curriculum, students and educators engage in candid and fruitful discussions of race and racism, class and classism, sex and sexism. In courses like Cultural Anthropology and Holocaust Studies, students learn about the ways people have used bad science to create and uphold divisions among people. Outside of the classroom proper, students participate in a well-attended GSA (gay-straight alliance), we always send a strong delegation of students to the Student Diversity Leadership Conference (SDLC), and we regularly hold UniTown, a 48-hour leadership and diversity retreat focused on diversity, tolerance, and social justice.

And yet, I would argue, disability studies has not found a real toehold in this context. I am arguing here that it should–it must–if for no other reason than that “what seems to be rudeness on the part of nondisabled people often arises from ignorance and fear  … and that the best way to relieve these is through education” (Mairs, 1996, p. 138). But the reasons to teach disability studies go well beyond cleaning up people’s manners. After all, we don’t teach people about racism just to make sure they don’t use the “n-word.”

I sometimes think that when we (and I don’t mean just my school) talk about diversity, we’re approaching it from this Crayola-box, United Colors of Benetton standpoint that emphasizes racial and religious diversity–and, to an increasing extent, gender, class and sexual diversity–but not diversity of ability. Consider, as a representative example, the mission of Anytown, a retreat experience for teenagers (on which Unitown is based): “to celebrate diversity and reduce bias, bigotry, and prejudice” (“Frequently Asked Questions,” 2014). The organizers promise that “delegates will confront issues regarding stereotypes, disabilities, gender, occupations, faith and religion, body types, sexual orientation, class and privilege” (“Frequently Asked Questions,” 2014). The website also includes an invitation to bring items such as “quinceanera dresses, native clothing and artifacts, menorahs, kepahs, pictures, music, quotations and readings” (“Frequently Asked Questions,” 2014). These items will be spotlighted on “‘Culture Night,’ when we share and appreciate our heritages with cultural singing, dancing, clothing, objects and customs” (“Frequently Asked Questions,” 2014). This description seems to entail view of diversity that doesn’t really, sincerely, include disability. I guess as artifacts I would bring the knee replacement components that were removed from my joints after failing and being re-replaced. As for songs, maybe “Head, Shoulders, Knees and Toes (Knees and Toes).” In my culture, there is no dancing to speak of.

So yes, I think we should introduce disability to the curriculum much in the same way we have interwoven or featured race, gender, sexuality, and class as lenses through which we examine power. And, given the amount of creative freedom and autonomy I enjoy as the sole teacher/designer of the 10th grade English curriculum, it might seem like I am ideally positioned to do so. To some extent, I have tried. I have my students read Nancy Mairs’ essay “On Being a Cripple.” Rosaldo (1994) says that Karl Marx’s prose is “designed to grip and persuade a reader  . . . often flamboyant, at times dripping in sarcasm, and often drawn as caricature in order to bring home a political or analytical point” ( p. 191); I like Mairs’ writing for similar reasons.

Although I present this first-person essay to them alongside other readings intended to broaden their view of human experience and to diversify the set of narratives that are valued in the classroom  (a few examples are “Blue-Collar Brilliance,” “Saudis in Bikinis,” “Black Men and Public Space”), I feel sheepish about the Mairs essay. I feel exposed and vulnerable, worried they will sniff out how profoundly I identify with Mairs and think I’m foisting some personal agenda on them. Clearly, I agree that “neither the prophet nor the demagogue has any place in the classroom. . . . One should neither preach one’s religion nor impose one’s politics on a captive audience” (Rosaldo, 2004, p. 170). And in order to uphold that mandate, I must labor at least in part under the delusion that my teaching self is, or can be, separate from my real self. (How telling that as a teacher I am “Ms. Decker” but on the front page of my arthritis memoir manuscript that’s floating around, as well as on the fiction and nonfiction I’ve published, I’m “Andrea Avery.”) The faultiness of this bifurcated identity is revealed to me when I feel so acutely injured in reading my students’ responses to Mairs’ essay. I don’t have their work here in front of me, so I’m generalizing, but these are the kinds of things I’ve read:

  • She seems really angry. She should try to move on.
  • She shouldn’t use the word “cripple.” It’s offensive.
  • It’s great that she found someone to love her even though she can’t really be a good wife or mother. Her family seems really patient.
  • It’s great she hasn’t let her disability keep her from living a nearly normal life.

I read these things, and I feel my supposed teacher objectivity crumbling, and I think, “I am too close to this.” And so perhaps I don’t push back on some of their assumptions or stereotypes, or even their misreadings (for example, the principal point of Mairs’ essay is why she uses the word “cripple” in place of other words. Certainly the objective teacher in me could ding a kid for not getting that, right? That’s reading comprehension!) the way I do when I’m coaching them through essays of race, sexuality, or class. Well, what of gender identity and sexism, you might be asking. Do I feel sheepish when I coach my students through feminist texts? For some reason, no. I identify as, and am perceived as, a woman. My style of dress suggests (correctly) my political leftness. These things pave the way for me to wear my feminism outwardly. Perhaps because of the weight of years and the work of feminists who came before, I do not think of feminism as a personal hobby that I can indulge in my free time but that I mustn’t impose on my students. Rather, I believe I am failing my students (male and female) if I do not teach them to see how imbalanced our world still is, how much work is yet to be done. Patriarchy and rape culture are bad for everyone.

Disability studies, though, remains this passion that I pursue outside of my professional capacity, using my other, “real” name. I write about arthritis and issues of disability, trying to get this finished memoir into the hands of the right agent or editor, truly believing that “sharing significant and intimate parts of our histories with each other . . . is a personal act with with humanizing consequences” (Blackburn, 2014, p. 55). But I’m more comfortable sharing my history beyond and away from my local community. In my daydreams about getting that book published, one of the only clouds floats in when I worry about whether my students (and their parents, and my co-workers) will read my work and know the real me.

That sounds strange, even to me. No one would accuse me of being a circumspect, closely guarded, private person, even among my students. They know quite a lot about me, and it’s not like my arthritis itself is a secret. But disability–not my own, but disability writ large, disability as social study, this thing that is so central to my life and my identity, this thing to which I have committed hours of evening study and early-morning writing, this thing that I fervently believe has as much place in a curriculum as race, gender, or queer studies–I keep held apart. I give it even less airtime in my classroom than I do other issues of social justice and equality to which I have much less personal connection. It is on my own time that I delve into “reading, writing, thinking, talking, some might say perseverating, to untangle the knots. If possible, or, if not, to come to know them intimately so I understand where and why I stand among the intricate tangles” (Blackburn, 2014, p. 47) even as I push my students to examine and reveal their whole selves in their own writing.

The plot thickens further when I consider that the research project that glows with the most heat for me involves working with students with disabilities or learning differences to examine in what ways our school is meeting their particular needs and how we can do more. For this research project, I will need to reconcile (and, likely, share) my own identity in relation to the word “disabled.” To earn their trust as people on the margins, I will likely need to acknowledge and divulge the ways in which I’ve been on the margins.

Personal narratives and individual experiences and testimonies are crucial to disability studies, in both scholarly and nonscholarly writing. As Garland-Thomson (2013) explains, “the field emerged in the 1980s, part of a cluster of politicized identity-based interdisciplinary fields of study . . . that theorized as well as actualized greater inclusion and equality in the academy” (p.916). As such, first-person narratives of illness were brought to the forefront of medical writing after spending years “relegated literally to the margins: prefaces, introductions, afterwords, footnotes, and italicized or small-print case histories” (Rosaldo, 1994, p. 60). Like scholars in other fields of study, the early pioneers of disability studies argued that personal narratives “often facilitate the social processes that have proven difficult even to perceive through distanced normalizing discourse” (Rosaldo, 1994, p. 60). I’ve spent years reading memoirs and testimonies of illness and disability and crafting my own. The narratives of others, including Mairs, have done much to empower me and make me feel less alone.

But personal narratives have their limitations. As Rosaldo (1994) says, “standing current fashion on its head by substituting tales of specific cases for distanced normalizing discourse will not yield a solution to the vexed problem of representing other lives” (p. 62). The primacy of personal narratives should not “discard classic norms but  . . .  displace them so that they become only one among a number of viable forms of social description rather than the one and only mode of writing about” (Rosaldo, 1994, p. 54) disability. And there is danger in over-individualizing experiences like racism, sexism, and ableism. To do so is to under-emphasize the systematic and institutional discrimination that serve to preserve the status quo.

And so, surprising even myself, I think some resolution of this tension for me will come when I move out of personal narratives of disability and spend more time examining the larger social context into which those narratives, including my own, fit. Garland-Thomson (2013) calls for us to think of disability studies as “a civil and human rights issue, a minority identity, a sociological formation, a historical community, a diversity group, and a category of critical analysis in culture and the arts” (p. 917). When I think of it that way, I feel more empowered to approach it the way I do feminism, as a power imbalance I am duty-bound to expose and explore with young people.

That is a call to action. What should my action be? As Blackburn (2014) reminds us, “action might look like a highly visible and audible march through city streets, but it may not. Action often happens at the personal and communal levels but has consequences at institutional and societal levels” (p. 55). Perhaps as a first step, I should make my (Andrea Avery) writing on disability more available in my classroom; maybe I should invite students to read my work while I’m reading theirs. I should make sure that I teach the Mairs essay as well as I teach any other essay. And, in addition refusing to shirk my own duty to teach disability, I should begin to seek out ways to lead my co-faculty to do the same. Jones (2011) provides me with a great starting point, and a potential model for a faculty activity I could lead, in her intervention work with teachers-in-training wherein she guided structured reflective writing assignments to increase their awareness of disability and “challenged [them] to rethink the politics of ability” (p. 219). After all, “teaching is as much a political endeavor as it is a profession. . . .  What we do and say in schools models for children how we expect them to interact in society” (Jones, 2011).

References

Blackburn, M.V. (2014). Humanizing research with LGBTQ youth through dialogic communication, consciousness raising, and action. In D. Paris & M. Winn (Eds.), Humanizing research: Decolonizing qualitative inquiry with youth and communities (pp. 43-56). Los Angeles, CA: SAGE Publications.

Frequently asked questions. (2014). In Anytown leadership camp. Retrieved June 17, 2014, from http://www.anytownleadershipcamp.org/f-a-q-s/

Garland-Thomson, R. (2013). Disability studies: A field emerged. American Quarterly, 65(4), 915-926.

Jones, M. (2011). Awakening teachers strategies for deconstructing disability and constructing ability. Journal of Ethnographic and Qualitative Research, 5, 218-229.

Mairs, N. (1996). Waist-high in the world: A life among the nondisabled. Boston, MA: Beacon Press.

Okorafor-Mbachu, N. (2004) Steven King’s super-duper magical negroes. Strange Horizons. Retrieved from http://www.strangehorizons.com/2004/20041025/kinga.shtml

Rosaldo, R. (1994). Culture & truth: The remaking of social analysis. Boston, MA: Beacon Press.

 

Freaks and BWRKs: Divulging Disability on College Entrance Essays

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Vidali, A. (2007). Texts of our institutional lives: Performing the rhetorical freak show : Disability, student writing, and college admissions. College English, 69(6), 615–641.

This is how I picked a college: My junior year of high school, a big alphabetical book of Colleges in the USA mysteriously appeared in my bedroom, the bedroom in the house I’d lived in since I was three months old. I thumbed through the big book of colleges and, I like to joke now, I got through the A’s. I attended Arizona State University.

Of course, I applied to a few other schools (six, which was in line with national averages but nowhere near the 10, 12, or 15 that some of my students submit nowadays), and I got in to all of them. It’s fun to ponder who or what I would be now, 20 years later, if I’d attended the University of Colorado at Boulder. Would I own Birkenstocks? What if I’d gone to the University of Central Florida, where I was offered a scholarship? Would I be tan? The University of Arizona, the University of South Florida ,the University of Utah, University of Maryland (though I had no intention of staying so close to home or going to the school one of my brothers had attended)? Would I be any different now, or would I just have a different collection of T-shirts and beer coozies?

Unlike so many of my students at the expensive, prestigious private school where I now teach, I didn’t really care where I went to college. I knew I wanted to go to a big school far away from home. I wanted to meet a thousand new people and have teachers none of my three older siblings had had before me. I wanted to major in music. I wanted to flee. I used the compass that had gotten me through geometry to draw a circle on a map of the USA, with Washington, D.C. at its center and a radius of 1,500 miles. Anything within the circle was a no; anything outside the circle was fine with me, especially if they had low admissions standards (I was suffering from burnout, low self-esteem, and simmering anxiety at the time).

I sent in my applications, I recorded my auditions for the music schools, and I awaited the fabled big envelope. I did not write any essays, personal statements, or statements of purpose. If I had been asked to write these things, I would have been confronted with a big decision: do I reveal to the people reading the essay, the people with my fate in their hands, that I have a physical disability–namely, severe rheumatoid arthritis? There would be advantages, of course: a narrative angle that distinguished me from the masses of similar-seeming applicants, for one. But there would be a big risk, too. Would my disability, which wasn’t reflected or revealed in any other element of my application, work against me? Would the admissions people doubt my suitability for sustained academic work? Would they peg me as a dropout risk?

In “Texts of our institutional lives: Performing the rhetorical freak show : Disability, student writing, and college admissions,” Amy Vidali (2007) argues that “institutional writing”–of which these college entrance essays are a type–pose risk for all students, but particular risk for students with disabilities. According to Vidali, students who choose to write about their experiences with disability for their college entrance essays are, in effect, participating in the same push-pull of power that participants in freak shows did. Students are are acting out of necessity, Vidali argues, as they “would  not write these admissions essays if they didn’t have to, and freak-show performers would likely have worked other jobs had gainful employment been available to them” (2007, p. 625). Furthermore, students find themselves in an “unequal rhetorical negotiation … where one person performs while others judge … similar to the relationship between freak-show performers and the objectifying gaze of spectators” (2007, p. 625). In short, students who write about their disabilities on these kinds of essays must be willing to “risk discrimination and create a ‘rhetorical spectacle’ of disability if it increases the chances of ‘getting in'” (Vidali, 2007, p. 623).

For her study, Vidali examined undergraduate students’ application files (after they’d been admitted to and begun attending college). She examined the rhetorical devices, structures, and tropes these students used in writing their experience of disability, and then she interviewed them to better understand their intentions, strategy, and reservations about doing so (if any).  In the case study presented here, Vidali examines the essays and interviews with three subjects, all of them white, English-speaking women of “typical college age” (2007, p. 617). Though the larger pool of subjects included students with “vision impairments, brain injuries, cerebral palsy, and repetitive stress injuries, as well as students who are hard of hearing” (Vidali, 2007, p. 617), the three women who constitute this case study all have learning disabilities.

It is crucial to point out that Vidali comes at her study operating on the sociological model of disability, as opposed to the medical model, and therefore “conceive[s] of disability as a social and political identity rather than as a pathological condition, individual burden, or personal tragedy” (Linton qtd. in Vidali, 2007, p.  617).

Some really interesting commonalities emerge from Vidali’s examination of these women’s essays, commonalities that the author argues derive from the limited ways disability is framed and talked about in the larger culture. For example, two of the three employed a “three-part structure, moving from humiliation to a moment of change to overcoming disability-related obstacles” (Vidali, 2007, p. 672). Anyone who’s seen any movie featuring a disabled character will recognize this arc: disabled people are often depicted as being shamed, humiliated, or depressed until the magical moment when, after persevering nobly, they have their wishes granted (often by an able-bodied physician acting as fairy godmother) and overcome the obstacle presented by their disability. Likewise, these two students emphasized having overcome their disabilities. Their essays have “happy endings” (Vidali, 2007, p. 627). Furthermore, they write in terms of old selves and new selves, echoing another classic aspect of the rhetoric of disability, as expressed by Kristin Lindgren: “illness represents not only a crisis in the body but also a crisis in identity” (qtd. in Vidali, 2007, p. 626).

The third woman in the case study did not rely on the three-part structure, nor did she provide a happy ending. She did not write about old selves and new selves or transcending or overcoming her disability. In fact, this third writer eschewed personal details of her disability narrative altogether, opting instead for a discussion of “equal opportunity for people with learning disabilities” and “the politics of disability disclosure” (Vidali, 2007, p. 627). This student-author writes in an assertive voice, even slipping into second person to challenge the reader (a college admissions professional, the holder of power, the person who paid admission to this freak show) in a series of questions. Vidali calls this decision daring and even suggests that it’s somewhat subversive: she is bucking “the traditional representation of disability as personal and the strict confines of the admissions essay–which compel that all successes be solely the result of individual effort” (Vidali, 2007, p. 626).

One thing that all three student-authors had in common was the desire to stand out. This isn’t surprising; the students I teach have been hearing since fifth grade how important it is that their college applications make them seem unusual, unique, well-rounded, multi-faceted, different from the others. Nowadays, it seems, “standing out” isn’t even enough! Vidali quotes from Rachel Toor’s Admissions Confidential: “Many schools are looking for what they call ‘angular’ kids, those with a much more focused interest or talent,” (qtd. in Vidali, 2007, p. 630), kids she calls “BWRKs,” which is “admissionese for bright well-rounded kids” (Toor qtd. in Vidali, 2007, p. 631). The necessity of “standing out” is particularly interesting in the context of young adolescents with disabilities who, if my own experience is a reliable indication, spend a great deal of time expressly trying not to stand out. Particularly for students with intellectual or learning disabilities, for whom their difference has most likely been treated as a deficit in the context of school, it must be something of a relief, if not a trip to bizarro-world, to encounter this writing assignment where, suddenly, they have an “angle” other students lack. They stand to gain from the exhibition of their disability just as a bearded lady or a pair of conjoined twins did by joining one of P.T. Barnum’s traveling troupes of freaks and oddities. When you’ve been marginalized, and an opportunity comes to get paid for your marginalization, it’s hard not to jump–or limp–at it.

But benefiting from one’s marginalized status is not an uncomplicated decision, especially given a culture that is suspicious of disabled people and all too eager to accuse disabled people of inflating, exaggerating, or even making up their disabilities. In fact, one of the student-authors here begged Vidali not to include a comment she’d made in the interview about manipulating her application. Vidali writes that the author “sensed that she was not supposed to admit that her discussion of her disability in her admissions essay was anything other than a pure distillation of her disability experience … admitting her disclosure is a managed performance pulls the curtain back too far” (2007, p. 632).

Another potential pitfall of attempting to write about disability on an application essay is the mismatch between the conventions of the genre and the nature of disability. These are short, pithy writings, and chronic disability is by definition not short and is rarely pithy. “This isn’t the winning touchdown, the cultural awareness gained on a trip to Mexico, or even the insight from experiencing a moment of racial discrimination”–all popular topics for student essays–and the writer “cannot place her disability in the past or check off a box labeled ‘lesson learned,’ because the extraordinary scholastic needs that result from her disability are past, present, and future” (Vidali, 2007, p. 616).

Vidali argues that “reconsidering the ambiguous agency of the freak in a circus setting provides an important opportunity to rethink the idea of students (with and without disabilities) as mere rhetorical dupes of an impressive admissions system” (2007, p. 616). This is no small thing, given that, according to Vidali, “9 percent of all students in postsecondary education have disabilities and because the consideration of disability urges attention to the diversity of all students” (2007, p. 617).

The purpose of Vidali’s study wasn’t to examine the effect of divulging disability on an applicants’ acceptance, though that would be a fascinating onion to peel: As schools develop public statements of diversity, is the climate changing such that it becomes increasingly advantageous to reveal a disability? While according to the rules admissions committees may not be able to factor in a student’s disability, admissions committees are made up of people with intricate identities, biases, and values just waiting to be plucked by the right story from the right student at the right moment.  I’d also like to know more about the rhetorical styles and features student-writers with non-intellectual disabilities employ: is a student who suffered a paralyzing accident also likely to use the three-part structure? How do students write about depression and anxiety, which rarely are conquered but rather accommodated? What about eating disorders? How far does the category of disability extend: Could/should a student write about recovery from drugs or alcohol and expect to “stand out” in the right ways?  When does the risk outweigh the reward? Which kinds of freaks are going to be most successful?

Vidali argues first that the field of disability studies–and its associated lexicons, rhetorics, and models–needs to be brought to the forefront of discussions of composition and language. She argues that teachers tend to discuss disability with their students, if they do so at all, from medical and psychoanalytic models as opposed to the postmodern identity-making models they use to discuss race or class (Vidali, 2007, p. 618). The secondary English classroom, which in my world is a training ground for the rhetoric and composition classroom these students will graduate to, already examines “‘how language both reflects and supports notions of the Other'” (Brueggemann qtd. in Vidali, 2007, p. 618), “challenges false binaries, and connects issues of practice and theory” (Vidali, 2007, p. 618) and so a significant and purposeful discussion of disability in these contexts would be natural and appropriate. Vidali is not in the business of critiquing these student essays; rather, she is preoccupied with “analyzing and locating the power dynamics and inequities that admissions essays both produce and reproduce” (2007, p. 622).

I am interested in these things, too. I’m also interested in helping students more successfully navigate the demands of these personal statements as part of their college application processes. To me, these essays are problematic partly because they ask students to write personally, revealingly, and profoundly about themselves when many of them have spent 12 years being trained to believe that first-person writing is unacademic, unimportant, unprofessional, and unwelcome. I think we need to do a better job in general teaching students how to write about themselves without navel-gazing or resorting to derivative, trite cliches.

After reading this article, I think the mandate to do so is especially necessary for our students with disabilities. We need to teach them how to write about their disabilities in ways that aren’t limited to these Hollywood-sanctioned story arcs. If we want them to be empowered by and unapologetic about their manipulation of rhetorical tropes, if we want to give them narrative control of their stories, we need to help them discover what those tropes are. We need to clue them in to the power dynamic that is the context of ability/disability in the world they live in. To do so, we need to include disability studies in our curriculum the way we do studies of race, gender, and class. Though the benefit of this inclusive curriculum would be strong for students with disabilities, it would also be good for students who don’t identify as disabled, just in the way that exposing and analyzing racism benefits both minority and majority students.

As a working professional, I know the treacherous legal complications of divulging disability at a job interview. The freak show push-pull dynamic is present in that context, too–but, I would argue, the potential gains are smaller than in the college admissions process. Hirers are considering the drain you’ll pose on their health plan, how many days of work you’ll miss, and whether you’re a liability for a discrimination lawsuit. Of course, all of that could change if we increase the visibility of disability as an axis of social identity.

If I’d been asked to write an essay to get into college 20 years ago, I don’t know if I would have written about my arthritis. But perhaps it’s very telling that when, less than a year ago, I was asked to write a personal statement for admission to this very doctoral program, I consciously redacted my writing for any direct mention or allusion to my disability. I split the difference, though–the writing sample I submitted along with my personal statement scrubbed clean of arthritis was a published essay in which I made explicit reference to my chronic illness. I’m 37 and confused and ambivalent about how much to say, how much to protect. I can only imagine what my 18-year-old students feel.

Teenagers know well what it is to feel like freaks, especially students with any kind of difference. Perhaps we need to educate them better about the complexities–the risks and the rewards, the empowerment and the objectification–of the freak show and then let them decide what kind of performance they want to put on.

References

Brueggemann, B. J., White, L. F., Dunn, P.A., Heifferon, B.A., & Johnson, C. (2001). Becoming visible: Lessons in disability. College Composition and Communication, 52(3), 368–398. doi:10.2307/358624

Lindgren, K. “Bodies in trouble: Identity, embodiment, and disability.” Gendering Disability. Ed. Bonnie G. Smith and Beth Hutchinson. New Brunswick, NJ: Rutgers UP, 2004. 145-65.

Linton, S. Claiming disability: knowledge and identity. New York: New York UP, 1998.

Toor, R. Admissions confidential: An insider’s account of the elite college selection process. New York: St. Martin’s, 2004.

 

 

Body, Language: A Case for Disabled Language?

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In Medicine Stories (1998), Aurora Levins Morales argues for a healing kind of history: a study of history that emphasizes personal testimony; a concerted effort to give voice and name to the heretofore unvoiced and unnamed; and a practice of study that scrutinizes interdependence, illuminates interconnectivity, and demands of its practitioners that they own their injuries as well as their complicity in the intricate web of power and privilege.

From the very beginning of this collection of essays, Levins Morales (1998) acknowledges which stories are hers to tell–among the identities she claims are Jew, Puerto Rican, woman of color, survivor of abuse, feminist, and “historian with an agenda”– and acknowledges that all historians “use some process of selection through which [they] choose which stories [they] consider important and interesting” (p. 25). So it would be unreasonable to ask her to speak for everyone, especially given her clear declaration of intent in offering her personal “interrogation” of history (p.25). Nevertheless, she casts a wide net, acknowledging and validating, even in glancing mentions, the experiences of groups of which she is not a member: slaves, witches, transgendered people, even animal rights activists.

And so it seems glaring to me that, throughout the 130-page collection of essays, she sidesteps, apart from a single passing mention in the context of Nazi atrocities, the experiences of disabled people. I do not think this is a sinister omission, but I do think it is an omission, and I’m inclined to think it’s a conscious omission given that Levins Morales is a feminist writing these essays at a time when the scholarly area of disability studies–often housed adjacent to, if not housed within, women’s studies in academia–was emerging as a significant discipline. So many of the habits of mind and scholarship that she advocates, such as the valuing of first-person narrative and testimony; the insistence on telling “untold and undertold histories” (Levins Morales, 1998, p. 26); the prodding to “show agency” (p. 30); and the encouragement to question existing value systems, align themselves explicitly with the aims of disability studies. If “childhood is the one political condition, the one disenfranchised group through which all people pass” (51), then disability is the one political condition to which we could all return, at any time, with no warning. Furthermore, certain historical events she discusses have real relevance for disabled people, especially disabled women. For example, in the essay titled “Nightflying,” in which Levins Morales (1998) invites us to reconsider the way violence toward women in the form of witch hunts has been minimized, almost to the point of cartoon (p. 45-49), it seems especially glaring that she does not acknowledge that features we now know to be physiological and decidedly un-evil–epilepsy, for example–were also used to persecute women as witches. It’s not just “women elders” (p. 48) who remain villainized by the witch-hunt narrative; it’s elder women with dowager’s humps or, as I can personally attest, young women with gnarled fingers and limping gaits who are thought scary and wicked. The scary old lady in the house on the corner? She usually has a cane.

I confess that I’m stymied by this omission but, especially given her final essay’s call for a unification of efforts as opposed to an endless splintering of interests, I accept it as a given of this author and her stance.  I’m not quite as ready as she to dispense with intersectionality as a crucial lens through which to view certain histories and experiences. Specifically, disability is a profoundly powerful axis that, in combination with gender, can be amplified or assuaged in the classroom. As Garcia and Ortiz (2013) argue, “while a disability label may assign students to a subordinate status in a general education classroom on the basis of their perceived disabilities, their gender, social class and/or racial identities may mitigate this status in different ways, creating privilege for some (e.g., male, middle class, or Caucasian students) but disadvantage for others (e.g., African American males from low income families)” (p.34). Nevertheless, it is not Levins Morales’s responsibility to speak for the disabled; in fact, it may very well be inappropriate for her to do so. But it may not be inappropriate for me to do so.

What I’d like to do, then, is acknowledge my own relationship to that label, that identity, that history, and then discuss my own professional practice–that is, as a teacher–through the lens of Levins Morales’s “medicinal history” (1998). Specifically, I’d like to focus on the second section of the collection of essays, “Speaking in Tongues” (Levins Morales, 1998, p. 55-71), in which she insightfully and powerfully examines the relationship between language and power. Having thoughtfully considered–and truly enjoyed–Levins Morales’s work, I’d like to borrow her framework and extend it to include a group, as represented by a dear student of mine, “Jessica,” that I feel could most benefit from this kind of “medicinal history.”

I have an ambivalent relationship to the title “disabled,” mostly because I have an ambivalent body. Having had rheumatoid arthritis for 25 years, I’ve experienced stretches of profound disability and, thanks to modern medical and surgical interventions, I’ve experienced periods of relative respite during which my pain, although never fully abating, has been ameliorated and able-bodied strangers’ reaction to my body have been less vicious and othering. That’s all I need to say about that for this discussion, I think, except that I’ll add that my shape-shifting identity as maybe-disabled does lend me a particular awareness of and empathy for my students who live with disabilities. I like to think that I am an ally for them, and I’ll point to my experience with Jessica as evidence of that.

Jessica is a brilliant 16-year-old, effervescent and energetic, quick-witted, curious, profoundly artistic, and dyslexic. Last year, I was both Jessica’s English teacher and her advisor, which means that I was to serve as the point-person for Jessica and her parents whenever an issue–social, academic, medical–came up that affected Jessica in more than one course. As you can imagine, Jessica’s dyslexia affected her performance in nearly every course (English, pre-calculus, Latin II, advanced chemistry, Europe since 1945). In English and Latin and history, she struggled with spellings and conjugations as well as taking in and processing large amounts of written and verbal data. She pored over her written assignments only to discover, upon turning them in, that she’d replaced the word “genocide” with “geometry” in every instance. In history and chemistry and precalculus, numbers transposed themselves. Perhaps as a function of her dyslexia or maybe as a concurrent issue, Jessica also struggled with giving sustained attention to any task and found herself hopelessly distracted by even the smallest sounds and activities from classmates.

Jessica struggled particularly in Latin and early on in the school year she came to me for help. Thinking she could use some empowering validation of her experiences, I directed her to some scholarly research on JSTOR about teaching classical languages to students with dyslexia. One article, aimed at teachers, offered practical solutions and ideas (enlarging typewritten documents, using serif fonts, etc.). When I showed the plainly written, down-and-dirty “use it today” article to Jessica, she beamed–here, then, is an example of Levins Morales’s idea of scholarly writing being accessible to the people who need it most (1998, p. 37)–and immediately she set out highlighting all the tips that she thought would be useful but that weren’t yet in practice in her Latin classroom. Next, we met with her Latin teacher and Jessica was able to advocate for herself in a solution-oriented way. This was one of my earliest experiences with Jessica and it made me pay particular attention to her in the classroom. After all, I had a dual role as her English teacher and her advisor. I was struck by Jessica’s maturity in seeking out allies and advocates and in her wise use of the network of support systems made available to her. I was also blown away by the amount of sheer intellectual bandwidth and problem-solving skill Jessica was putting into compensating for her dyslexia.

Interestingly, the only courses where Jessica was finding that her dyslexia was not a deficit but an asset were her art classes–experimental materials and game design–where she was exploring with wit and cleverness ways to represent for “normal” people what the world of symbols and letters looked like and felt like to her.

As her decidedly descriptivist English teacher, it wasn’t a challenge for me to overlook her misspellings or transpositions. I was happy to work with her on a draft to point out to her where she’d swapped a word or where her ideas were all jumbled up and in need of categorizing and streamlining. Jessica and I worked well together.

But as I read Levins Morales’s chapters “On Not Writing English” and “Forked Tongues,” I was struck by the realization that I did not do enough on Jessica’s behalf, neither as her English teacher nor as her advisor. I didn’t do what her art teacher did, which was allow her–encourage her–to depict the world as she saw it in the language of her experience. Her perception of the world is jumbled, overstimulated, anxious, cryptic, blooming. Why shouldn’t her writing be?

Now, this perspective tests the limits of even my descriptivism. Can an English teacher advocate for a student’s right to write in jumbled, overwhelmed and overwhelming ways? I think she can. This is where I return to Levins Morales. The “legislators of language,” she  points out, “are almost exclusively male, white, and wealthy”–and, I’ll add, able-bodied if not body-normative. “They are people with social power, and as is the wont of such folk, they set things up according to their own very specific needs and then declare those needs universal: if it isn’t the language we speak, it isn’t English” (Levins Morales, 1998, p. 57).

Levins Morales (1998) points out the idea that is at the heart of all efforts to increase diversity in representation, the belief that is behind the movement away from “Dick and Jane” names in primers and standardized tests and behind the mannequin  in a wheelchair at your local Kohl’s: “To live surrounded by a popular culture in which we do not appear is a form of spiritual erasure that leaves us vulnerable to all the assaults a society can commit against those it does not recognize. Not to be recognized, not to find oneself in history, or in film, or on television, or in books, or in popular songs, or in what is studied at school leads to the psychic disaster of ceasing to recognize oneself” (p. 61). I believe that schools–no, I believe that I–need to do a better job not only of showing students like Jessica characters and real-life figures who think like they do (e.g., Mark Haddon’s 2003 “The Curious Incident of the Dog in the Nighttime,” which features a protagonist/narrator with autism) but also of validating and celebrating their language. Why shouldn’t Jessica’s writing reflect the world as she perceives it, just as Levins Morales’s writing is colored with her varied influences? If I bludgeon Jessica’s writing into conformity, am I like those well-meaning feminist editors who silenced Levins Morales’s differentness and shoehorned her into genericness? I do not want to hold Jessica to any less a rigorous standard than the other students; after all, she can hold her own intellectually and creatively. But–and this is a question of “excellence”–can I uphold rigor while honoring her perception of the world, and helping her to put it on the page? “That is why we write,” Levins Morales says. “To see ourselves on the page. To confirm our presence” (1998, p. 62).

And Garcia and Ortiz’s (2013) warning about the unfair perceptions of disabled students raises even more questions for me: Jessica is a well-behaved, hard-working, upper-middle-class white girl. Have I been more inclined to honor her disability in writing than, say, the scattered writings of a hyperactive boy like Will, who I may perceive to be simply sloppy and disorganized? I need to confront these questions. I need to do right by the Jessicas and the Wills.

I don’t know the answers to these questions. I know, though, that my own experience of shape-shifting disability has granted me access to two languages, two lexicons. I can write in the upright, whole, healthy English of able-bodiedness, studied during my healthy first 12 years of life, and I suspect that my writing–lurching, improvisatory, full of fragments–reflects the body I live in now. I have the right to write in the language of my body, so does Levins Morales, and so does Jessica.

References

Garcia, S. and Ortiz, A. (2013). Intersectionality as a framework for transformative research in special education. Multiple Voices for Ethnically Diverse Exceptional Learners, 13(2), 32–47. Retrieved from http://mv.ddel.metapress.com/index/YV7822W58116KW42.pdf

Levins Morales, A. (1998). Medicine stories: History, culture and the politics of integrity. Cambridge, MA: South End Press.