Book Review—What it Means to Be Literate: A Disability Materiality Approach to Literacy After Aphasia

by Elisabeth L. Miller

 

Esther M. Gabay—The Ohio State University

 

What it Means to Be Literate: A Disability Materiality Approach to Literacy After Aphasia by Elisabeth L. Miller, unifies three fields of study—literacy studies, disability studies, and materialism—to explore and understand literacy practices, literacy perceptions, and literacy values of disabled people with aphasia and those connected to them. She views this intersection as an “ableist violence of literacy—the way literacy is commonly yoked with ability, illiteracy with disability, and the ways these associations do harm to individuals’ sense of themselves as being literate or doing literacy in ‘right,’ ‘normal,’ or ‘able’ ways” (Miller 9). Miller’s inspiration “to learn more about what it means to be literate after aphasia” (46) derives from her being the daughter of a mother living with aphasia and as a researcher who studies reading and writing. Her interdisciplinary approach links theoretical conceptions from literacy studies and disability studies to reveal “what, in fact, disabled people do with literacy” and how they do literacy (3). Further, her study examines how literacy is perceived and enacted by people with aphasia, people whose communication and literacies have shifted due to a brain injury, a stroke, or a progressive illness. Through a mixed-methods approach, Miller’s study focuses on the literacy practices and perceptions of people with aphasia revealing how literacy and material literacy technologies carry internalized complex cultural and social ideas and expectations that impact self-confidence, beliefs about their social roles and identity, and shame and pride associated with the habits employed to enact literate activities. By bringing literacy studies and disability studies together, Miller blends theoretical constructs and frameworks that add to the current conversations in these fields. She foregrounds her argument within foundational and contemporary literacy scholarship, such as J. Elseph Stuckey’s concept of “the violence of literacy,” Deborah Brandt’s conception of literacy as a reflection of social ideologies, and Eric Darnell Pritchard’s conception of literacy normativity (11–12).

As Miller bridges literacy studies and disability studies, she references scholars working at the nexus of both, like Brenda Jo Brueggemann, whose research, for instance at Gallaudet University, examines the literacy culture at an all-deaf university and demonstrates how people who are hard of hearing enact literacy differently but are perceived as literate or illiterate according to normative literacy conventions (13–14). Miller’s book comes at a time when scholar-teacher-researchers across writing studies are grappling with, inventing, and seeking ethical and equitable grading and assessment practices that resist measuring and marking students against able-bodied and normative western ideologies of literacy. Disability scholars Jay Dolmage and Margaret Price, whom Miller discusses regularly in her book, have written extensively on how academe is rooted in ableist norms that privilege able-bodies and minds. Though Miller is not examining institutional literacy or assessment, her analysis pushes our conception of what constitutes literacy and literate practices in and out of institutional spaces and what meanings, symbolism, and cultural capital are assigned to literacy. For educators working within institutional contexts that privilege standardized white monolingual literacy norms, students with a range of non-normative literacy habits and skills often get pathologized and labeled disabled or illiterate (Miller 13). This has broad implications for students and shapes the publics’ perception of what literacy involves.

Miller’s study forwards a perspective of literacy that seeks to make readers cognizant of the insidious ideological, harmful, and material consequences of normative literacy values and beliefs imposed on folks who may not perform literacy in familiar or conventional ways. The book’s five chapters unifies dimensions of literate practices, revealing the entangled and complex lived experiences of people with aphasia through a disability materiality approach—an approach Miller says can show how “aphasic writers take up, inhabit, grapple with, and challenge ableist scripts around (1) the body in literacy [...] and (2) the spaces, places, activities, tools and materials that matter in literate practices and environments” (10). Uniting disability studies and literacy studies, according to Miller, allows her to situate a new materialist framework at the center of this study to understand better how feelings, bodies, and environments are enmeshed, thus influencing literate behaviors, beliefs, and practices. Miller’s goal is clear; she is challenging perceptions of literacy and literate possibilities, and she expands the definition and norms attached to literacy for educators and researchers in writing studies, disability studies, literacy studies, and the social sciences writ large.

Miller takes a grounded theory approach in her study, but she describes the design and execution of her study through the lens of critical disability scholars’ critiques and analyses of research practices for a normative able-bodied sample. Her research methodology, discussed in Chapter One, “Centering Communicative Disability and Communicative Access in Literacy Research,” is not only thoughtfully crafted but doubly serves as a space for Miller to complicate normative research practices that assume normative participation. Miller’s disability-centered research approach applies constructs from Jessica Nina Lester and Emily A. Nusbaum’s book Centering Diverse Bodyminds in Critical Qualitative Inquiry and from Margaret Price and Stephanie Kerschbaum’s article “Stories of Methodology: Interviewing Sideways, Crooked and Crip.” It is evident that Miller thought deeply about access for study participants and that she was modeling ethical accessible critical disability studies research approaches for audiences. Miller tells us that her research protocol follows Stacy Alaimo and Susan Hekman’s ideas about “multimodal methodology” (32) in order to give participants choice in their communicative preferences and break down “normative assumptions of interviews and the barriers they may impose on [research] participants” (Miller 37). This multimodal methodology offers participants a range of possible communication channels from in-person meetings to email chats, to video chats, and even use of sketches and images. Miller’s consent forms, too, include visuals and concise text to make the study protocol accessible to participants, demonstrating by contrast how conventional data collection, research protocols, and designs may not transfer to participants in ethical and accessible ways despite our best intentions.

This first chapter offers a necessary commentary on inaccessible standards of research and its limitations, often overlooked or neglected by academics. Subtle moves critiquing traditional techniques and processes emerge in Miller’s generous narrative reflections. For instance, while reflecting on an interview session that relied mostly on an oral communication mode with one of the participants, James, Miller remarks that “[i]n addition to putting James in a frustrating communication situation, I perhaps also left the interview with less information than I could have by more fully challenging the language-based structure of the interview situation” (39). In Miller’s narrative, she explains how she came to realize that the hyper-focused social science approach interrupted, and harmed, interviews with participants. For aphasic people, the research norms she attempted to apply with good intention were simply not accessible for her participants and thus not going to work for her. For researchers who recognize the limitations and ethical implications of positivist and objectivist research approaches, Miller illustrates how sensitive and relational research practices can be ethical, nuanced, and accessible without compromising the study and its findings.

The rest of the book actively unpacks three entanglements in three subsequent chapters—feelings, embodiment, and ecology—that Miller sees working together to influence and engender literacy beliefs, practices, and behaviors in people with aphasia. Beginning with Chapter Two, “Feeling Less Than Literate: The Material Consequences of a Normate Template for Literate Identity,” Miller focuses on what she calls a “normate template” (a term she adapted from Disability Studies scholar Aimi Hamraie) to explain how the “normate template for literacy” is a “persistent comparison to unattainable, idealized ‘norms’ for [literate] practice, particularly for what bodies and materials should do” to and with literacy (Miller 52). Starting with deep rooted feelings and cultural impositions of normative literacy approaches, Miller effectively frames how normative literacy standards infiltrate people’s sense of self-worth and morality. Miller argues in this chapter that the “normate template” is deeply enshrined in people’s feelings of competence, ability, and identity and in turn creates a feeling that the person is not literate enough because their literacy no longer feels intuitively and habitually “correct.” The material consequences, Miller asserts, are grave and powerful, leading to shame and loss, the resistance toward reading and writing, and, ultimately, “the belief that to be literate is to be able, to be able is to be literate” (52). In this chapter, Miller zooms in on participants’ perceptions of their own literacy, which many feel they have lost, and shows the detrimental effects on aphasic peoples’ sense of identity, status, and position.

While Miller’s exploration of the normate template reveals the consequences, persistence, and intrusion of normative literacy ideals, Chapter Three, “Embodying Literacy: From Compulsory to Complex,” looks at the ways aphasic people retrain and rehabituate their bodies and minds to work with new literate tools and practices in response to the sentient literacy experience. In this chapter, Miller suggests that reading and writing are cultivated throughout time and lifespans to match the needs of bodies and minds through available literate tools. While this chapter illustrates how compulsory able-bodiedness motivates participants to regain their previous literacy skills and return to normal, Miller simultaneously shows how an awareness of the body and the individual’s body’s needs to do literacy engenders new and creative literate practices and understandings about disability and literacy. On the one hand, the complex embodiment Miller describes includes a belief that “normal” means one must practice and retrain one’s literate abilities as a reflection of their moral character. Failing to try to re-acquire normate literacy practices represents a fear that the person will be perceived as a failure, socially and individually. Even still, Miller argues that people with aphasia find innovative ways to accommodate their literate practices depending on their physical and intellectual needs subverting normative expectations of what it means to do literacy. By showcasing four participants’ literacy histories and post-aphasic literate practices, Miller illustrates how deep metacognitive processes are involved in their literacy that is both engendered by personal ideologies around literacy and what the body needs to do literacy. This might include understanding how much energy one needs for a given reading/writing task, scheduling time according to one’s concentration level for reading or writing, finding individualized ways to process texts, or using literacy resources like a planner or text-to-speech software. Readers might recognize agreements here with J. Logan Smilges’ argument that “reading is overrated” and that “literacy” should account for the meaning making of neurodivergent people or Nicole Green’s argument that aurality constitutes reading despite it not being a sighted process that entails typical decoding cognitive maneuvers. Overall, Chapter Three reminds readers, but especially educators, that literacy and our expectations and conceptions of literacy may not manifest in the few ways we imagine or have been trained to perceive, identify, or assess.

Miller’s final chapter, “Exceeding Ableist Literate Norms: Toward Literacy Disability Ecologies,” feels like a unification and extension of the previous chapters, exploring the complex symbiotic literacy ecologies that generate and facilitate literate practices for aphasic people. The book builds toward this final chapter, in which Miller argues that an ecology of literacy is intertwined in an ecosystem that operates with and through relational, material, discursive systems, and relationships. This chapter examines how aphasic people “inhabit their literate environments” and how they bend literacy conventions in ways that subverts ableist norms (Miller 105). Miller contests the notion that literacy is “solely individual or solely social,” a nod to the “great divide” in literacy studies (105–06). Rather, she describes disability and literacy as a co-constitutive process that materializes through relationships among people, things, and environments. Miller’s final chapter shows “how language, time, technology, and people interact, push back at, and transform one another in literacy-disability ecologies” (106), ultimately challenging how we understand co-authorship, collaboration, and multimodal communication that highlights the less visible aspects of the composing process.

Although Miller’s goal is to reconceptualize and revise our understanding of standardized literacy and literate ideals, Miller is not directly talking to educators.. However, all educators’ pedagogy and perceptions of literacy may have much to gain from Miller’s complex analysis. In the conclusion of the book, Miller claims that this study can for “educators in formal and informal education […] [point] to myriad opportunities to make literacy education more accessible: to both meet the needs of individuals with bodies and minds of all kinds but also to support and prepare learners to thrive across life change” (140). Despite Miller’s perception, in some sense, the crux of the book seems to serve a niche audience of literacy studies, disability studies, and new materialism teacher-scholar-researchers who are well versed in these disciplinary areas and their respective theoretical frames and not teacher-scholars in, for instance, two-year colleges, community literacy programs, or institutional developmental literacy programs.

Regardless of this critique, Miller successfully illustrates how forceful ideologies of literacy construct a seemingly innocuous “normate template” that is stigmatizing, reductive, influential, and affective. Ideals of literacy have become so prevalent and normalized in society, that people who inhabit them deeply internalize and attach many negative ideas and perceptions of how, and even if, people with aphasia and other disabilities enact, engage, and exercise literate practices. Even more, Miller’s study underscores the narrow definition we apply to literacy, but, through the lived experiences of aphasic people, she also exposes the many complex ways literacy is embedded in and exercised in the daily lives of people living with aphasia.

 

WORKS CITED

 

Green, Nicole E. “Heard Any Good Books Lately? Reseeing the Sound of Literacy in the College English Classroom.” College English, vol. 83, no. 6, 2021, pp. 442–62, https://doi.org/10.58680/ce202131358.

Miller, Elisabeth L. What it Means to Be Literate: A Disability Materiality Approach to Literacy After Aphasia. Pittsburgh Series in Composition, Literacy, and Culture, U of Pittsburgh P, 2022.

Smilges, J. Logan. “Neuroqueer Literacies; or, Against Able-Reading.” College Composition and Communication, vol. 73, no. 1, 2021, pp. 103–25, https://doi.org/10.58680/ccc202131589.