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Disability Life Writing and the Politics of Knowing


by Beth A. Ferri - 2011

Background/Context: Scholars in disability studies in education, like scholars in other critical fields of inquiry, increasingly draw on a more interdisciplinary range of texts in their research and teaching, including art, fiction, film, and autobiography.

Purpose/Objective/Research Question/Focus of Study: The author asserts that contemporary disability life writing can and should be read with view to challenging a tangle of oppressive ideologies and destabilizing any claim to a normative or fixed center. Autobiography as a genre, however, requires a particular set of critical reading practices to fully illuminate myriad ways in which these texts can serve as important and politically grounded counternarratives to the dominant discourse. Read critically, these texts have the potential to unravel the myth of normalcy that undergirds so many of the exclusionary practices in education.

Research Design: Analytic essay.

Conclusions/Recommendations: A critical disability studies approach requires more than the infusion of different kinds of texts; it also requires the incorporation of diverse methods of analysis and theoretical framing of those texts in order to fully appreciate their transgressive potential.


To define ourselves, name ourselves, speak for ourselves instead of being

 defined and spoken for by others. (Lorde, 1980/2006, p. 43)


No body, no voice; no voice, no body. That’s what I know in my bones.

(Mairs, 1996a, p. 96)


To be present in the world implies strictly that there exists a body which is at once a material thing in the world and a point of view toward this world. (Beauvoir, 1989, p. 7)


Disabled people have been spoken about, and spoken for, but rarely listened to. (Sherry, 2005, p. 165)


Seeking to interrupt the dominant scripts of disability (Ferri, 2008) and to delve more deeply into the “interplay between ableism and other aspects of [identity and] culture” (Baglieri, Bejoian, Broderick, Connor, & Valle, 2011, this issue), scholars in disability studies in education (DSE), like scholars in other critical fields of inquiry, increasingly employ interdisciplinary methods in their research and teaching. To counter acritical understandings of disability in special education discourse, for example, scholars in disability studies often incorporate fiction, film, popular culture, and first-person narratives into their teaching and scholarly work. These works are valued for their ability to help us to “imagine disability otherwise . . . and move beyond overly deterministic normalizing discourses of cure and care” within clinical and popular discourses (Ware, 2002, p. 146).


Autobiographical narratives as a form of “counter discourse” (Couser, 1997) are valued for their ability to “talk back” to dominant understandings of disability as deficit (Mintz, 2007). Disability life writing locates “disability as a complex social, political, and embodied position from which an individual might legitimately narrate [his/]her life experience” (p. 17). These kinds of narratives “do cultural work. They frame our understandings of raw, unorganized experience, giving it coherent meaning and making it accessible to us through story” (Garland-Thomson, 2007, p. 121). In other words, these texts should be seen as a form of social critique. Of course, the publishing industry, like the film and television industry, privileges sentimental and emotional stories that position disability as loss, or triumphal stories of individuals overcoming adversity through sheer force of will or determination (Couser, 2002). Such stereotypical portrayals of the inspirational “super-crip” who succeeds against the odds seem designed to make “disability palatable to an ableist” audience (Mintz, p. 17). According to Couser, however, autobiographical works that are counterdiscursive are written from the “inside of experience,” in ways that are self-consciously political and challenge conventional meanings ascribed to disability (pp. 109–110).


Yet, some humanities-based scholars in disability studies, most notably Mitchell and Snyder (2000) and Davis (1995), have voiced a concern that disability memoir can inadvertently reify the overcoming script so prevalent in fictional portrayals of disability. These scholars1 see personal narrative as “too personal” and too focused on disability as a personal or individual struggle rather than a social and political one (Mollow, 2002). Admittedly, it is not difficult to find narratives that adhere to this well-worn trope. Indeed, the ubiquity of the overcoming script might tell us something about how difficult it is to write oneself into a ready-made discourse, particularly if one wishes to be published.


As Butler (1990/1999) wrote in regard to autobiography, we are never outside of language. The difficulty, according to Butler, is that the “I” can only “express itself through the language that is available to it” (p. xxiv). Normative frameworks, of disability in this case, determine who can and cannot lay claim to subjectivity. In other words, when it comes to narrating one’s life, norms constitute intelligibility. Thus, to tell one’s story and to be understood, one is inevitably caught within webs of meaning informed by normative assumptions. Unfortunately, the normative view of disability is not a particularly positive one. As Garland-Thomson (2007) wrote, it is a “story of despair, catastrophe, loss, excess, suffering, and relentless cure-seeking” (p. 114). Yet, as Butler explained, even when we are resisting dominant scripts, we still must engage with them to be rendered intelligible. Thus, pushing against hegemonic scripts, we nonetheless call them into being.


Moreover, simply having a narrative grounded in one’s lived experience is by no means a guarantee that it will offer either a politically grounded or counter-discursive portrayal of disability (Couser, 2002). Thus, it is not altogether unusual to read disability memoirs that take up dominant notions of disability or enact the overcoming script, as if on cue. These memoirs sometimes reflect an internalization of medical or deficit model understandings of disability. More often, however, these memoirs take the form of the person positioning himself or herself up as an exception to the norm by succeeding against the odds, where others presumably fail. Paradoxically, when one places something or someone as the exception to the rule, although the individual is seen as exceptional, the rule (often a stereotype) is allowed to remain firmly entrenched. In other words, the assumption that people with disabilities are, except for a very few remarkable individuals, helpless or pitiful is not dislodged by the super-crip plot. In this way, the super-crip, as a narrative convention, relies on a problematic and contractory relationship between disability and ability or achievement (Clare, 1999).


Yet, some of the skepticism around disability life writing reflects a very similar reluctance by those adhering to the social model to deal openly with impairment (Sherry, 2005). To those who wish to deal with disability as a purely theoretical construct, perhaps the disabled body is “too much a body, too real, too corporeal” (Porter, 1997, p. xiii). In many ways, the message gleaned from disability studies scholarship could be construed to mean that impairment is something that is acceptable to talk about amongst ourselves, but certainly nothing we should be airing in public. Yet, Mairs (1996a) and other disability life writers willingly take up the task of writing “bare brace and . . . tongue hanging out” (p. 105). In so doing, they refuse any tension between the political, the social, and the personal, insisting on a disability politic grounded in lived experience and necessarily embodied. In reclaiming voices that have “often been usurped by non-disabled people” and by naming their experiences, they seek to change society (Sherry, p. 165).


DISABILITY LIFE WRITING AS SOCIAL ACTION


A more critical reading of contemporary disability life writing has the potential to render these works not simply as individualistic trauma narratives, but as important sites of social action and critique (Couser, 2005). As Mark Sherry (2005) stated, attending to these texts, which situate the body at the “intersection of biological and the discursive” (p. 168), forces us to consider how disability is “simultaneously a very personal and an intensely social experience” (p. 164). In other words, life writing helps to complicate the disability/impairment distinction that has been rightly critiqued for ignoring the ways that impairment itself is constructed and for erasing the experiences of people with chronic illness and other nonobvious disabilities.


Multiply situated and grounded in embodied experience, much of contemporary disability life writing can and should be read as challenging a tangle of oppressive ideologies and destabilizing any claim to a normative or fixed center. Moreover, rather than eliding the body, these narratives insist that critical theory, perception, and subjectivity are all grounded in the “poetics and politics” (Mintz, 2007) of the lived and situated body. What we see in disability life writing is a “conscious rendering of altered physicality in prose” (Kuusisto, 2005, p. 150). As such, disability life writing offers a necessary “return to the visceral in disability studies,” resulting in theorizing that is at once personal, social, political, and embodied (Mintz, p. 3).


According to Csordas (1999), the body is not tabula rasa, waiting for culture to inscribe meaning, but inevitably both cultural and material, both experience and subjectivity—in dialogic interaction. In Waist-High in the World, for example, Nancy Mairs (1996b) discussed her experience with multiple sclerosis (MS) as a type of situated embodiment, which places her metaphorically and corporeally underneath and on the margins of able-bodied society. She asserted that marginality is more than a “metaphor for power relations . . . [it is] a literal description of where I stand (figuratively speaking): over here, on the edge, out of bounds, beneath your notice. I embody metaphors” (p. 58). Here, Mairs connected the abstract and theoretical with the material realities of the lived body in ways that insist on an accounting for both the material and ideological.2


This said, I want to also acknowledge that autobiography as a genre requires a particular set of critical reading practices to fully illuminate myriad ways these texts can serve as important and politically grounded counternarratives to the dominant discourse. Read critically, these texts have the potential to unravel the myth of normalcy that undergirds so many of the exclusionary practices in education. As Sherry (2005) stated, There is an urgent need for a critical disability studies analysis of these texts” (p. 167). I conclude the article, then, with the idea that an interdisciplinary disability studies approach requires more than the infusion of different kinds of texts, but also the incorporation of diverse methods of analysis and theoretical framing of those texts, to fully appreciate their transgressive potential.


DISABILITY: “YES, IT IS THAT PERSONAL, AND IT IS THAT SOCIAL.”3


A central defining feature of disability studies aims to dislodge the medical model of disability, replacing narrow and deficit-based understandings of disability with alternative knowledge claims grounded in disabled people’s subjective and situated experience. Scholars of contemporary disability studies, for example, locate disabilities within the structures of society rather than within the biology or essence of individuals. Yet, this focus on the social has inadvertently led to a false dichotomy between the social and the personal—mirroring other binary distinctions like mind/body, public/private, ability/disability. Inevitably, when the personal is positioned in opposition to the social, autobiographical works can be seen as too personal, too individualist (Davis, 1997), or too confessional (Mitchell & Snyder, 1997). Yet, to read disability life writing this way is to miss the theory at work in these works.


Instead, by drawing from a more feminist grounded disability studies, I argue that autobiographies of oppressed groups should be read as important sites of intellectual and political resistance (McKay, 1998) rather than apolitical and overly sentimentalized stories about individuals succeeding against the odds or overcoming adversity. Writing specifically about the intellectual tradition of Black women’s autobiography, McKay noted that it is never politically insignificant for individuals who have been denied subjectivity and selfhood to “write themselves into being” (p. 97). Thus, as Couser (2002) wrote, “autobiography deserves a prominent place” in disability studies “by the same logic that has made it essential to other area studies,” such as women’s and ethnic studies (p. 109). Therefore, rather than a dismissal of disability life writing, there is an “urgent need for a critical disability studies analysis of these texts” (Sherry, 2005, p. 167).


As Mintz (2007) argued, “life stories told from the margins” do particular kinds of cultural work (p. 11). For instance, these texts can open up important discussions in the classroom about “whose lives count” and whose stories are worthy of narrating (p. 211). Here it is important to consider not only what kind of bodies get published in terms of race, class, gender, sexuality, and disability, but also which versions of those lives are rendered intelligible or tellable. As Mintz wrote, disabled women, although well represented in disability life writing, have “rarely appeared as the subjects of conventional autobiography,” which is characterized, at least in Western traditions, by the “disembodied ‘I’ who pretends to a kind of transparent self-awareness” (p. 6).


Refusing a mind/body divide, disability autobiography locates subjectivity in the body and positions bodily experience as a site of epistemological and ontological insight, rather than an impediment to knowledge or as a transparent medium of the self (Lindgren, 2004, p. 146). Rather than privileging the mind over the body, the body in much of disability life writing forces us to recognize the limits of a stable self or the continuity of identity (Lindgren). Instead, the body is an unpredictable, changeable, and unstable grounding of perception and identity. Whether embracing a strategic transcendence of the body (Wendel, 1996) or insisting on knowledge grounded in the lived body (Mairs, 1996a, 1996b), the disabled body frustrates narrative coherence at the same time that it opens up possibilities for new meanings (Weiss, 2008).


Challenging medical or pathology-based understandings of difference, disability, and illness (Couser, 2005), these texts insist on a more nuanced and complicated understanding of disability as informed, but not determined, by lived experience. They provide important tools for “resisting or reversing the process of depersonalization” of medical discourse (Couser, 1997, p. 337) by insisting that disability cannot be known in isolation, but rather only in relation to the person who claims it. A mantra within disability discourse, “nothing about us without us,” is a reminder that disability cannot be divorced from lived and embodied experience. Moreover, within the genre, disabled people often insist on an epistemology grounded in disabled experience. Manning (2005), after becoming blind, discovered ways of knowing that he had been oblivious to as a sighted man. He explained, “A whole new way of knowing the world was opened up to me, and I couldn’t absorb it fast enough.” Rather than focusing on his loss of sight, Manning explored a blind epistemology. Characterizing this new way of knowing the world not as compensation for his loss of sight, however, Manning discovered that sight had simply distracted him from these insights that blind people must have known all along. Similarly, Kleege (1999) described how even the most representational piece of art becomes an abstraction through her eyes. She wrote,


Up close, Monet’s waterlilies are wonderfully crusty, while at a distance they seem almost liquid. I enjoy these discoveries and marvel at the artist’s skill and ingenuity. While my too-close vantage point makes representational paintings seem abstract, with abstract works I sense not only movement and energy but depth and form. (p. 94)


As a blind woman, Kleege’s perception of art is no more or less authentic or real, just different. Brueggemann (1999) succinctly referred to her own disability-specific way of knowing as “the sense I made with one sense missing” (p. 85).


In a return to the “visceral” (Mintz, 2007, p. 3), these texts also push back against cultural norms about the body and demand an acceptance of bodily difference (Weiss, 2008). Mairs (1996), for example, preferred to say “I am a body” rather than “I have a body” because the latter positions the body as a disembodied object, possessable by the “I” (p. 84). In Carnal Acts, Mairs insisted that her voice, her subjectivity, and her body are all inseparable. She wrote, “No body, no voice; no voice no body. That’s what I know in my bones” (1996a, p. 176). Thus, an important insight of disability life writing is a more complicated theorizing about embodiment and the relationship between mind and body (Lindgren, 2004) than we typically find in other sites of critical discourse.


In disability life writing, we often are made aware of the politics of language as writers subvert terms of derision, using words like crip, cripple, gimp, and spaz. Rather than terms of ridicule or contempt, these terms are redeployed, twisted from their prior usage and used as a political strategy (Butler, 1993), a source of agency and pride. Mairs (1996a), for example, explained,


First, the matter of semantics. I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are “handicapped” and “disabled.” . . . People—crippled or not—wince at the word “cripple,” as they do not at “handicapped” or “disabled.” Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger. (p. 9)


In choosing cripple, Mairs subverts ableist stereotypes by positioning herself as a “tough customer” who does not limp, but swaggers. She also employs humor as a textual practice, another strategy often employed in disability life writing to countercultural tropes of disability as tragedy.


Disability life writing often provides opportunities to “investigate . . . multiple, intersecting, unpredictable, and inassimilable identities” (Miller, 1998, p. 368), particularly if one selects narratives written by disabled people who are multiply situated in terms of race, class, gender, or sexuality. These narratives help to illuminate the simultaneous play of power between social structures and individual agency (Sherry, 2005), and they refuse any singular notion of subjectivity. In Manning’s (2005) autobiographical solo performance of Weights, for example, he wrote how as a blind and Black man, he is continually caught between oppressive, yet contradictory images (Ferri, 2008; Sandahl, 2004). As a blind man, he is pitied, and as a Black man he is feared, but in a poem titled “Magic Wand,” Manning insists,


My final form is never of my choosing;

I only wield the wand;

You are the magician.


Here, Manning reminds us that each of these cultural images is constructed in ways that attempt to deny his own sense of identity as simultaneously a Black and blind man.


As Miller (2005) wrote, “Certain stories can be told in certain ways and for certain purposes” (p. 222). Rather than thinking about autobiography as offering us (or our students) “proof or evidence of some fully examined accessible” self, it is important to view narrative not as a unified, coherent, stable, or essentialized self, but as a self that is socially and discursively produced, always in a state of becoming (Miller, 2005). In autobiography, we are not privy to an unmediated truth, but one that is shaped by the normalizing conventions of the genre, by discourse, and by the particular social, cultural, and historical context from which they are written. Thus, the goal in teaching these kinds of texts must be to help students read autobiography in ways that highlight the particular without essentializing or losing sight of the social/political.


Importantly, disability life writing can help expose ideologies of difference, revealing “the values-laden processes through which ‘disability’ produces ‘ability,’ like other socially produced binaries: male/female and black/white” (Baglieri et al., 2011, this issue). Thus, by engaging critically in the constructedness of ability and disability, readers begin to see the interdependence of seemingly opposite yet socially produced and interdependent categories that are upheld in a state of perpetual opposition by the same hegemonic notions of norm(alcy). Moreover, in disability life writing, we can see firsthand the ways that the categories of “normal and abnormal take on great significance” despite being completely naturalized within schools and society.&&&


Particular reading strategies that help students to apprehend the critical nature of these texts include reminding students to resist overgeneralizing or feeling like they have gained access to “the truth” about a particular disability. Couser (2002) suggested assigning students several narratives of individuals with the same disability to avoid leaving students with the idea that they have gained the true or authentic experience of any particular disability. I also find it useful to assign two or more narratives of individuals who share the same disability label but differ from each other in terms of race, gender, class, sexuality, or historical context. In this way, we focus on disability as idiosyncratic and interwoven within a myriad of identities and contexts.


Juxtaposing first-person accounts with narrated texts (written by parents or siblings, for example) or collaboratively produced texts can help tease out a variety of perspectives and highlight any inconsistencies or contradictions within the various voices in the text. Likewise, the actual format of the text can shift our apprehension in productive ways—for example, reading Twitch & Shout (Handler, 2004) as a traditional memoir and then viewing it as a documentary film affords different levels and modes of analysis. Other juxtapositions might include reading a memoir and a graphic novel side by side, or reading poetry and memoir to explore how different genres produce different meanings or demand different reading practices. Such juxtapositions also help us to untangle what is made possible/impossible by the various genres of life writing and by narratives that situate the self in terms of multiple and often conflicting lines of privilege and oppression.


Similar to other kinds of texts in disability studies, the proliferation of disability life writing4 continues to privilege White bodies, demonstrating the need to seek out narratives that can address the politics of race and disability. In fact, even authors like Mintz and Couser, who have written extensively on disability memoir, continue, with very few exceptions, to focus on texts written by White authors. A recent call for disability narratives on a disability listserv yielded an almost exclusive list of narratives written by White authors. This lack of diverse voices is mirrored in the dearth of authors of color in disability studies readers and anthologies (Bell, 2006). It has been said enough times that we as critical scholars can no longer innocently or inadvertently omit diverse voices from our research, our syllabi, our reading lists, our conceptual framing. Such willful forgetting should have no place in disability studies. Thus, until autobiographies of people of color are written and published as readily as those from White people, it may be that we need to expand our sites to nonprint narratives such as YouTube, blogs, and other new media.5 Students can be assigned the task of building a bibliography of disability memoirs, which can then be analyzed for erasures or gaps in our knowledge base.6


Making a conscious effort to include narratives that can speak to an intersectional politic is simply a start. According to Mollow (2002), disability studies scholars have been slow to incorporate intersectional analyses, placing race either in opposition to disability (ableism vs. racism); as analogous (ableism as racism); or in hierarchy with other forms of oppression (first ableism, then racism). These kinds of “like race” analogies have been widely criticized for obscuring and obliterating race and for assuming a false separation between race and disability (May & Ferri, 2005; Spelman, 1997) or between race and gender (Grillo & Wildman, in Mollow, 2002).


As Mollow’s (2002) analysis of the book Willow Weep for Me by Meri Nana-Ama Danquah illustrates, however, engaging with texts that don’t necessarily assume the primacy of ableism over other forms of oppression can complicate disability studies in productive ways. For example, Mollow wrote that for a Black woman, access to health care might be a more salient concern than a social critique of the medical model. Such texts contain more nuanced and intersectional analyses than much of the scholarly work in disability studies. As such, perhaps one of the most subversive aspects of disability narrative is its ability to talk back, not just to the medical model, but to the social model as well. This refusal to “follow the script” (Barton, 2007), even when the script in question is seen as emancipatory, should not be seen as something to suppress, but to embrace.


CRITICAL READING PRACTICES


According to Gilmore (2001), the number of autobiographies or memoirs has grown exponentially in recent years. The defining subject that accounts for this “memoir boom” is disability. Interestingly, Lindgren (2004) wrote that disability autobiographies were uncommon prior to 1950 and rarely appeared before the 1900s. Perhaps the first question to consider is why the emergence of the subgenre in the mid-1950s, and why the increasing popularity of the genre over the course of the second half of the 20th century? What histories are embedded in the narrating of disability?


As stated earlier, we should not assume that every disability memoir is overtly political. Neither, however, should we assume that every memoir, because it focuses on lived experience, is not critical or theoretical. I would argue that a useful merging of humanities-based critical reading practices can elicit important insights and textual practices that are key to highlighting the theoretical insights often embedded within autobiographical texts. Teasing out the politics of knowledge in the personal story helps to account for the social and political aspects of the personal story. It highlights the potential for reading personal narrative as social action. In the remainder of this article, I posit a set of critical readings practices, put in the form of questions, that can be useful for teasing out these insights. These questions are drawn from critical discourse studies, media studies, and narratives studies, but informed by disability studies. This list is certainly not exhaustive, but offered as a starting point for a more politicized reading of disability life writing.


1.

How is the story told in terms of time? How does the author order his/her life experiences (Smith & Watson, 2001)? How does the text build from beginning to end? If it is a narrative about an acquired or progressive disability, how does dis/ability figure into the plot of the text? What happens before and after the diagnosis?

2.

What are the critical incidents that are (and are not) narrated? Are there gaps/years not accounted for? How is space represented? Does the narrative travel—how do the spaces/places in the narrative figure into the text?

3.

How is the body conceptualized or represented? How does the text take up embodiment? What is the place of bodily experience and embodied knowing? How does the disabled body serve as an alternative source of knowledge?

4.

How does the author negotiate rationality and emotion? What is the relationship between mind/body and reason/emotion in the text?

5.

How does the narrative embrace notions of desire, sexuality, and sexual agency? How does the author resist or push back against assumptions of asexuality?

6.

How does the author view dependency or interdependency? How does the author push the genre of autobiography (as one person’s story) to make spaces for a more interconnected view of self/other?

7.

How does the author use humor and for what purposes? What other language and discourse practices are evident in the text?

8.

Where are ruptures, gaps, or fractures in the narrative (Miller, 2005)? Where does the narrative resist conceptual tidiness in favor of a more complicated telling?

9.

Can you find examples where multiple and/or conflicting voices emerge (Smith & Watson, 2001)? Where does the person deviate from the conventional scripts of disability and difference, and where do they take up these scripts?

10.

What are the different ways of making meaning of disability, race, class, and gender employed by the author?

11.

Do you notice any silences within the text? How do these silences provide clues about the implicit power dynamics (Sherry, 2005) at work in the text? What aspects of disabled identity cannot be spoken or told, at least not directly?

12.

What meanings arise by attending to the intersections of disability, race, ethnicity, gender, sexuality, and so on (Sherry, 2005)? How do race, gender, class, and sexuality complicate how disability is experienced in the narrative (and vice versa)?

13.

Who is the imagined audience, and how are we, as readers, positioned and “hailed” by the text (Ellsworth, 1997)? Is the text written with a disabled or nondisabled reader in mind? Does the narrative make assumptions about other identities either shared or not shared?

14.

What are the overarching metaphors or common threads that the author uses to make meaning of his or her experiences? (McKay,1998)? What are the metaphors of disability, and how do these metaphors compare to cultural representations of disability?

15.

How does the author resist being known? In reading this narrative, how can we embrace an ethic of “unknowing” as we encounter the text? How does the author resist our impulse as readers to “know” the narrator as a finalized, contained, and static self?

16.

What is the relationship of the self to others in the narrative (McKay, 1998)? Does the author develop a critical consciousness around disability, race, gender, sexuality? If so, when? How did this come about?

17.

How does the person blur the conventional genre of autobiography, and what does this tell us about the limits and possibilities of the genre itself?

18.

What are the sources of received knowledge about disability, race, class, gender, and sexuality? What is the personal mythology operating in the text (Watson, 1999)?

19.

How does ability or normalcy operate in the text? How does the author position himself or herself in relation to hegemonic notions of normalcy (Baglieri et al., 2011, this issue).


CONCLUSION


There is much to be learned by attending critically to disability life writing. By allowing the personal to inform the social, we insist on an embodied disability theory as an important site of knowledge production and social critique. Read in this way, memoir becomes an intervention into the politics of knowing as well as the politics of representation. As such, memoirs should not be seen as counter to theory or politics, but should be understood as a form of social action for their ability to talk back to dominant scripts and point to a more embodied form of social critique. Refusing to cede to any one authoritative discourse, disability memoir is theory that, as Mairs (1996a) wrote, stays “close to the bone” (p.17).


Notes


1. It is interesting to note that Davis has written several memoirs of his own, including My Sense of Silence: Memoirs of a Childhood with Deafness (2008, University of Illinois Press) and Go Ask Your Father: One Man’s Obsession With Finding His Origins Through DNA Testing (2009, Bantam). He joins other disability studies scholars who have published memoirs or hybrid texts that blend social and personal history, such as Anne Finger (2006, 1991), Simi Linton (2007), Brenda Jo Brueggemann (1999), Georgina Kleege (1999), and Michael Bérubé (1998), to name a few.

2. The fact that scholars in disability studies in education are less likely to express trepidation about disability memoir may have something to do with their insistence on linking the theoretical with lived experience. While embracing humanities-based disability studies scholarship in their teaching and research, scholars in education nonetheless remain fiercely committed to connecting disability studies scholarship to the everyday lives of students. Thus, part of the value in an interdisciplinary merging or blurring of social science and humanities-based scholarship is the refusal of a purely textual, abstract, disembodied analysis, in favor of a disability studies that remains close to the lived body.

3. From Sherry (2005, p. 164).

4. Gilmore (2001) wrote that the number of autobiographies or memoirs, based on a quick WorldCat database search, tripled between 1940 and 1990. The defining subject that accounts for this “memoir boom” is the trauma narrative, many of which fall into the genre that Couser (1997) called autopathography.

5. I recently decided to replace a required literature circle assignment that required students to read and discuss a disability memoir. Instead of providing students with a list of published disability narratives to select from, I asked students to identify 8–10 YouTube videos that focused on a particular disability. I encouraged them to try to find videos that represented diversity in terms of gender, race, and ethnicity. They then critically analyzed the videos, looking for ways the videos pushed back against deficit or medical model understandings of disability. Besides including a much more diverse set of voices than typically shows up on lists of published autobiographies, I was also pleased to see so many videos created by adolescents and young children.

6. I have actually assigned this task to students, and it brings up important insights regarding these questions: Whose lives are worthy of narrating? Which kinds of disability are privileged? What exactly counts as “memoir” or “autobiography”?


References


Baglieri, S., Bejoian, L. M., Broderick, A. A., Connor, D. J., & Valle, J. W. (2011). [Re]claiming “inclusive education” toward cohesion in educational reform: Disability studies unravels the myth of the normal child. Teachers College Record, 113(10).


Barton, E. L. (2007). Disability narratives of the law: Narratives and counter-narratives. Narrative, 15(1), 95–112.


Bell, C. (2006). Introducing White disability studies: A modest proposal. In L. Davis (Ed.), The disability studies reader (2nd ed., pp. 275–282). New York: Routledge.


Bérubé, M. (1998). Life as we know it: A father, a family, and an exceptional child. New York: Random House.


Beauvoir, S. D. (1989). The second sex. New York: Knopf.


Brueggemann, B. J. (1999). Lend me your ear: Rhetorical constructions of deafness. Washington, DC: Gallaudet University Press.


Butler, J. (1993). Bodies that matter: On the discursive limits of “sex.” New York: Routledge.


Butler, J. (1999). Gender trouble: Feminism and the subversion of identity. New York: Routledge. (Original work published 1990)


Clare, E. (1999). Exile and pride: Disability, queerness, and liberation. Cambridge, MA: South End Press.


Couser, T. (1997). Recovering bodies: Illness, disability, and life writing. Madison: University of Wisconsin Press.


Couser, T. (2002). Signifying bodies: Life writing and disability studies. In S. L. Snyder, B. J. Brueggemann, & R. Garland-Thomson (Eds.), Disability studies: Enabling the humanities (pp. 109–126). New York: MLA.


Couser, T. (2005). Genre matters: Form, force, and filiation. Life Writing, 1, 139–156.


Csordas, T. J. (1999). Embodiment and cultural phenomenology. In G. Weiss & H. Fern Haber (Eds.), Perspectives on embodiment: The intersections of nature and culture (pp. 143–162). London: Routledge.


Davis, L. (1995). Enforcing normalcy : Disability, deafness, and the body. New York: Norton.


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Cite This Article as: Teachers College Record Volume 113 Number 10, 2011, p. 2267-2282
https://www.tcrecord.org ID Number: 16433, Date Accessed: 12/3/2021 1:44:29 AM

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About the Author
  • Beth Ferri
    Syracuse University
    E-mail Author
    BETH A. FERRI is an associate professor in inclusive education and disability studies at Syracuse University. Her recent articles have appeared in Teachers College Record, International Journal of Inclusive Education, Gender & Education, Disability Studies Quarterly, and Disability & Society. Her book, written with David J. Connor, titled Reading Resistance: Discourses of Exclusion in Desegregation and Inclusion Debates, chronicles how problematic rhetorics of race and dis/ability were used to maintain and justify segregated education after the Brown decision. She is currently working on an edited book, Righting Educational Wrongs: Disability Studies Law and Education (Syracuse University Press).
 
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