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).
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.
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