Intellectual/Developmental Disability, Rhetoric, and Self-Advocacy: A Case Study

Dissertation

Presented in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy

in the Graduate School of The Ohio State University

By

Sean Kamperman, M.A.

Graduate Program in English

The Ohio State University

2019

Dissertation Committee

Christa Teston, Advisor

Margaret Price

Amy Shuman

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Copyrighted by

Sean Kamperman

2019

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Abstract

Using grounded methods and deploying a critical disability studies framework, this dissertation assesses how people who identify or are identified as having intellectual/developmental disabilities (I/DD) use their rhetorical skills—specifically, their self-advocacy skills—to access academic life. Through interviews and observations of rhetors affiliated with an innovative inclusive education program pseudonymously titled “STEP” (“Successful Transitions and Educational Progress”), I offer a practice account of I/DD’s relation to rhetoricity, or rhetorical capacity, in academic spaces.

Contra to officialized discourses that portray self-advocacy as the responsibility of individual rhetors, I attend to self-advocacy’s social and rhetorical dimensions across three “sites”: student self-advocacy practices, assessment technologies used to measure student self-determination, and the self-advocacy practices of professional self-advocates.

After a methodological commentary on the need for qualitative researchers in rhetoric and writing studies to attend to accessibility as a practical and theoretical concern, I conclude by reflecting on the implications of my findings for rhetorical education writ large: specifically, for how teachers conceive of the relationship between collaboration and credibility in their classrooms.

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Dedication

For Milton

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Acknowledgments

This project would not have been possible without the generous support of so many. I’m blessed to have a family who puts up with my absent-mindedness and a partner who is not only patient, but utterly brilliant. Colleen Morrissey, thank you for your love, your podcast recommendations, and your much needed tips on self-care. You made writing this so, so much easier. Mom and Dad, thanks for hanging on to the hundreds of lists, doodles, stories comics, etc. I made as a kid (I’m coming back for those, by the way) and for never failing to show how much you care. Katie, thanks for being my big sister par excellence, my personal trailblazer, playmate, and caffeine donor.

The brilliance and generosity of my teachers at Ohio State continually amazes me.

Christa Teston, thanks for showing me the kind of scholar and mentor I want to be and for helping me work my way through so many ideas. You stuck by me even back when this dissertation was about maps (?), letting me explore without wandering too far.

Margaret Price, your support of graduate students is awe-inspiring. Thank you for your brilliant, kind feedback on my work and your wonderful sense of humor. Thank you,

Amy Shuman, for your fascinating seminars and for connecting me to so many people, including the folks at the “STEP” program. You nurtured this project from its inception.

Many thanks as well to Scott DeWitt, Wendy Hesford, Jonathan Buehl, Lauren Squires,

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Harvey Graff, and Cindy Selfe for consulting with me at various stages of the project’s development.

To my grad student colleagues: thanks to Elizabeth Brewer Olson, Chad Duffy,

Rebecca Hudgins, Jessie Male, Ryan Sheehan, Lauren Strand, Andrew Sydlik, and the other members of the OSU disability studies graduate student community for giving this project both intellectual and spiritual nourishment. Thanks also to Jennifer Burgess, Sara

Franssen Wilder, Michelle Cohen, Kaitlin Clinnin, Erin Bahl, Sherita Roundtree, Mike

Blancato, Gavin Johnson, and Laura Allen for your helpful comments, encouraging remarks, and general camaraderie. And thank you to the Interdisciplinary Seminar in

Literacy Studies for Graduate Students and the Graduate Association of Mental Health

Action and Advocacy—in particular, Alyssa Chrisman, Hillary Degner, Melissa

Guadron, Lindsay Harper Cannon, and Liz Miller—for your fellowship.

To my OSU friends: I’m truly blessed to have found in you such a fun, witty, caring group of comrades. Louis Maraj, thanks for being my dude. Zach Harvat, Caitlyn

McCloughlin, Pritha Prasad, and Drew Sweet, you made my experience navigating this grad life way more fun than it had any right to be. To my non-OSU friends: Tyler Watts, your friendship through it all has been golden. Andy Thrasher, Ana Whitaker, and the other denizens of the “KeptFriendly” Slack group, thanks for keeping the conversations we started back in the days of TV Night in America rolling.

Finally, the gratitude I owe my study participants is immeasurable. Christine

Brown, students, faculty, and staff of the STEP program—thank you for supporting this project and for the gift of your time. And to the folks at Austin Clubhouse, who inspired

v this work way back when—what can I say? Thank you for teaching me that “anything is possible when working toward wellness together.”

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Vita

May 2007……………………………………Midway High School

2011………………………………………....B.A. Plan II Honors/Rhetoric & Writing,

The University of Texas at Austin

2010 to 2013………………………………...Staff Generalist/Development Coordinator,

Austin Clubhouse, Inc.

2015………………………………………....M.A. English, The Ohio State University

2015 to present…………………………...... Graduate Associate, Department of

English, The Ohio State University

Fields of Study

Major Field: English

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Table of Contents

Abstract ...... ii Dedication ...... iii Acknowledgments...... iv Vita ...... vii List of Tables ...... xi List of Figures ...... xii Chapter 1. Introduction ...... 1 (Re)Think College ...... 1 Background ...... 7 I/DD as marginalized subject in Rhetoric & Writing Studies ...... 7 I/DD vis-à-vis Disability Rhetoric ...... 16 Methodology and Theoretical Framework...... 21 Study Procedures ...... 26 Chapter Overview ...... 30 Chapter 2. Institutional Recognitions and Student Accounts of Self-Advocacy at a Large Midwestern University...... 35 Introduction ...... 35 Background ...... 38 Methods...... 44 Participants ...... 47 Demographic Characteristics ...... 47 Prior and Emergent Experiences with Self-Advocacy...... 49 Findings...... 50 Analysis...... 54 Exploring Interests and Setting Goals...... 54 viii

Using Rational Discourse to Find Help and Avoid Harm ...... 57 Regulating Embodied Signs of Disability...... 65 Using Assistive Technology to Communicate ...... 71 Conclusion ...... 75 Implications for Educational Praxis ...... 77 Chapter. 3 Scientific Self-Determination: Measuring Selves through Technoscientific Text Ecologies ...... 82 Introduction ...... 82 Description of the Arc’s Self-Determination Scale ...... 86 Theoretical Framework ...... 92 Psychometric Assessment as Technoscientific Practice ...... 92 Technoscientific Text Ecologies – Contexts of Praxis ...... 96 Methods...... 99 Analysis Pt. 1: Citations ...... 104 Analysis Pt. 2: Validity and Reliability Claims ...... 112 Conclusion ...... 128 Chapter 4. The Professional Self-Advocate: Toward an Accessible Public Sphere ...... 129 Introduction ...... 129 Background ...... 133 Disability Studies Framework...... 138 Methods...... 143 Data collection and analysis...... 143 Findings & Analysis ...... 147 Portrait of a Professional Self-Advocate...... 148 Agential Episodes ...... 155 Discussion ...... 173 Chapter 5. Emergent Theory, Emergent Access: Bridging the Gap between Theory- Building and Access-Building in Grounded Methodology ...... 177 Introduction ...... 177 Emergent Theory ...... 184 Emergent Access ...... 191 Conclusion ...... 198 Coda: The Credibility Question ...... 204 ix

Bibliography ...... 215 Appendix A. Interview Protocol for STEP Students ...... 232 Appendix B. Chapter 2 Open Codes ...... 234 Appendix C. Chapter 3 Open Codes ...... 239 Appendix D. Interview Protocol for Professional Self-Advocates ...... 241 Appendix E. Acronym Guide ...... 242

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List of Tables

Table 1 Self-Advocacy: Definitions, Modalities, Situations ...... 52 Table 2 Indicators of Institutionally-Sanctioned Self-Advocacy at EMU: Codes and Definitions...... 53 Table 3 Pragmatic Functions of the SDS Procedural Guidelines ...... 117 Table 4 Observational Data Sources ...... 145 Table 5 Professional Self-Advocacy Skills: Codes and Definitions ...... 150 Table 6 Relation of Professional Self-Advocacy Skills to Rhetorical Agency: Applications and Outcomes ...... 157

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List of Figures

Figure 1 Sample test questions from the Arc’s Self-Determination Scale (Adolescent Version)...... 90 Figure 2 Nested analysis in access-oriented grounded theory ...... 201

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Chapter 1. Introduction

(Re)Think College

There is a movement afoot in the disability rights community to make higher education accessible to people with intellectual/developmental disabilities (I/DD). In the

U.S., this movement has led to a significant increase in the number of postsecondary education programs for students with I/DD, from roughly 13 in 2000 to 265 in 2018

(Neubert, Moon, Grigal & Redd, 2001; McEathron and Beuhring, 2011; Grigal, Hart,

Smith, Papay, & Domin, 2019). The overall quality of educational opportunities for students with disabilities has increased in proportion, according to the Think College

National Coordinating Center, a federally funded research and advocacy organization for college students with I/DD, their families, and inclusive educators (Grigal, Hart, Smith,

Papay, & Domin, 2019). At last count, 48 U.S. colleges and universities now offer what are called Transition and Postsecondary Programs for Students with Disabilities

(TPSIDs)—exemplary, federally recognized programs designed specifically to enable students with I/DD to attend college in inclusive settings. Whereas students with I/DD attending college classes would have been unthinkable to many a mere twenty-five years ago, stories about the achievements and aspirations of students with I/DD are increasingly common today, appearing on popular television programs such as The Today

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Show (Abrahamson, 2019), in documentaries (Habib, 2019), and in national news publications (Spencer, 2017; Nietzel, 2019).

Taking its cues from these historic developments and the disability rights movement’s now famous rallying cry, Nothing about us without us, this dissertation asks: how do people who identify or are identified as having intellectual/developmental disabilities use their rhetorical skills to access academic life? What can scholars in rhetoric and writing studies learn about rhetorical agency from attending to the communication of people with I/DD, who historically have been excluded from not just academia, but public life altogether? To answer these questions, I present findings from a grounded analysis of a program I call “STEP”—“Successful Transitions and Educational

Progress”—at an institution I call “East Midwestern University,” or EMU.1 I attend in particular to self-advocacy as a site of rhetorical production with significance for how people with I/DD, both students and members of the general public, navigate social space.

I/DD is a capacious term, encompassing many types of disability that may interfere with thinking and learning. The primary reason I use this term and not simply

‘intellectual disability’ is because I/DD is the classification used by the STEP program and its institutional home, the “John Dewey Research Center.” The John Dewey Center is a hub for research on both intellectual and developmental disability, much of which is

1 STEP, EMU, and the John Dewey Research Center are pseudonyms. To protect the privacy of my student participants and others affiliated with the STEP program, I’ve chosen not to disclose the actual research site. See “Study procedures” for an extended rationale.

2 federally funded. Consequently, the STEP program admits students with a variety of developmental diagnoses, including autism and intellectual disabilities such as Down’s syndrome. While major professional organizations such as the American Association on

Intellectual and Developmental Disabilities (AAIDD) acknowledge that intellectual disability and developmental disability are related, there are important distinctions between the two categories that labels such as ‘I/DD’ can elide. Intellectual disability is defined by the AAIDD (2019) as “a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills” (par. 1). While the intellectual disabilities that are the concern of the AAIDD are developmental, meaning they can be identified in persons and diagnosed by certified professionals before the age of 18, the category ‘developmental disability’ can refer to diagnoses such as autism that have no necessary relation to intelligence. To complicate matters further, in the U.K., the term ‘learning disability’ is sometimes used interchangeably with intellectual disability (National Health Service,

2018), while in the U.S., learning disability typically refers to conditions affecting speaking, reading, writing, and mathematical ability, such as dyslexia, dysgraphia, dyscalculia, and apraxia, that have little to nothing to do with intelligence (National

Institute of Child Health and Human Development, 2018). The common thread through these varied forms of embodiment, as I discuss below, is their historical marginalization within formal education systems. Many STEP students, for instance, struggle to read above a third grade level, raising important questions about the suitability of college

English curricula for I/DD-diagnosed learners. Though my key study participants all have

3 diagnoses that fall under the I/DD umbrella, they exhibit a range of intellectual abilities and may reject labels such as intellectual disability that they feel do not apply to them.

Throughout this dissertation, I make an effort to respect such individual labeling preferences, while using the term I/DD for clarity. Furthermore, as I explain below, I deploy a critical disability studies lens that views disability as malleable and socioculturally constructed rather than finite. Using such a lens, the question of a person’s particular diagnosis is less important than understanding how interactions between individuals and their environments produce rhetorical phenomena of disability.

Although postsecondary education programs (PSEs) for people with I/DD such as

STEP have existed in various forms since the passage of the Individuals with Disabilities

Higher Education Act (IDEA) of 1975 (Neubert, Moon, Grigal & Redd, 2001), changes in federal support for such programs over the past decade have led many more U.S. colleges and universities to adopt them. On August 14, 2008, the United States Congress reauthorized the Higher Education Opportunity Act (HEOA) of 1965, introducing federal mandates authorizing the development of national standards for PSEs via the Think

College National Coordinating Center. Think College provides institutions with research and guidance and supervises the process whereby PSEs are classified as TPSIDs.

Compared to other PSEs, TPSIDs strive to offer students a higher level of support, academic opportunity, social integration, and long-term future planning. There are currently eight TPSIDs in Ohio and dozens nationally. These new programs, along with the availability of federal aid, are providing a whole generation of youth with I/DD unprecedented access to higher ed.

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The road to the current level of availability and standardization of postsecondary educational opportunities for students with I/DD was made possible in part by parent advocacy and self-advocacy (see Chapter 4). Before students with intellectual disabilities could attend college, people with I/DD and their families fought for many decades just to attend K-12 schools (Trent, 1994; Osgood, 2005). Even with the passage of IDEA, which guaranteed all children, regardless of disability, access to a free appropriate education in the least restrictive environment, many students with I/DD continue to be receive substandard education as a result of poor enforcement and oversight (Sarason & Doris,

1979, pp. 362-5; Lipsky & Gartner, 1997, 63-72). Local grassroots self-advocacy and parent advocate movements provide support where government cannot, advocating on behalf of students who encounter unlawful barriers to their participation. Since the 1960s, the self-advocacy movement in particular has risen to become a powerful force in inclusive education, giving students with intellectual/developmental disabilities a greater voice in their education, if indirectly. Professional educators, responding to the demands of self-advocates for equal access to public facilities, public transportation, and the curriculum, now include self-advocacy as a learning outcome of special/inclusive education curricula, working directly with self-advocates to develop assessments and other teaching tools (Wehmeyer, 1995; Wehmeyer, Bersani, & Gagne, 2000).

In the inclusive education literature, self-advocacy is usually summed up as the act of expressing one’s choices or preferences, explaining one’s needs, or sticking up for one’s rights (Lehr & Taylor, 1986; Cunconan-Lahr & Brotherson, 1996). It is, in the eyes of many people with I/DD and others in the disability rights community, an almost sacred

5 practice, the key to building a more inclusive society (Fleischer & Zames, 2001; Gray &

Jackson, 2002; Pelka, 2012). Rhetorical practices of individual and collective self- advocacy originating within the independent living, disability rights, and mad pride movements of the 1960s and 70s have been adopted by organizations of people with

I/DD, leading to a growing interest among educators in teaching disabled students self- advocacy skills. Whether because of cognitive impairment, learned passivity, or a combination of these factors, individuals with I/DD, by the time they finish high school, often are thought to lack the self-advocacy skills deemed necessary to live and work independently (Wehmeyer, 1992). In response, psychologists and professional educators have developed tools and curricula to assist students with I/DD in honing these essential transition skills (Test, Fowler, Wood, Brewer, & Eddy, 2005). These curricula are woven into many TPSIDs, which are required to offer instruction in self-advocacy and other

“self-determination” skills, according to Think College. The postsecondary transition from high school to independent living is touted by many I/DD professionals as a critical period for developing advanced self-advocacy skills, especially considering the unique challenges of workplace self-advocacy (Freedman, Eisenman, Grigal, & Hart, 2017).

Deploying a rhetorical perspective, I argue that instruction in self-advocacy is about teaching people with disabilities how to represent themselves in certain situations.

In practice, this means increasing one’s knowledge of their disability and showing them ways to communicate that knowledge to others in order that they may navigate the world a little more easily. With its emphasis on representation and situation, this definition is slightly different from the idea that self-advocacy is about expressing one’s preferences

6 or standing up for one’s rights. A representational framework, as opposed to a merely verbal framework, encompasses not just words, but behavior and embodied performance.

Viewed thusly, self-advocacy training can be seen as a social project to pass along the rhetorical tools people with I/DD need to survive in a civil society not designed by them or for people like them. When self-advocacy training is conducted by nondisabled people, using tools made by nondisabled experts, problems can arise (see Chapter 3). Self- advocacy is thus always to some extent underscored by a struggle for control over who gets to define whose communication as legitimate, or at minimum credible. My findings suggest that in the end, regardless of who does the teaching, self-advocacy training is about learning rhetoric as an art of survivance.

Background

I/DD as marginalized subject in Rhetoric & Writing Studies

It is tempting to compare the growth of TPSIDs to other pivotal periods in the history of college diversity: the spread of coeducation during the 19th century, the Morrill

Land-Grant Acts of 1862 and 1890, the G.I. Bill, racial desegregation, deinstitutionalization and the Community Mental Health Act of 1963, the open enrollment period of the 1970s. Each of these eras and events ushered in changes to the student body and, consequently, changes to how educators and the public think about the purpose of the college/university system. Encountering and appreciating diversity is now widely recognized as an integral aspect of the college experience; reactionary attacks against higher education’s liberal model of inclusion indeed only confirm the extent to 7 which the college-going population has changed over the last fifty years, and the standard college curriculum along with it.

If college really is, in the words of professional self-advocate and study participant Christine Brown, “the hugest integrated setting,” how can “rethinking rhetoric through mental disabilities,” as rhetorician Cynthia Lewiecki-Wilson (2003) put it, help us rethink college? In other words, how can a critical, disability-centric assessment of the rhetorical practices of students with intellectual/developmental disabilities—one that values and respects such practices rather than regard them as deficient—lead us to rethink rhetorical education? To begin answering this question, I analyze the self-advocacy practices of (a) students who identify or are identified as having I/DD and (b) professional self-advocates with disabilities who advocate on such students’ behalf. In particular, I am interested in how these practices mediate access to academic spaces and public decision-making processes. These matters are linked in my mind, because what we

(the field) know about rhetoric and rhetorical agency has always been shaped by the institutional contexts in and through which said knowledge is produced: universities, colleges, and, for the most part, English and Communications Departments. By extension, our rhetorical theories are shaped by who has access to these disciplinary spaces. If, as some estimates hold, fewer than 15% of American adults with intellectual disabilities enroll in higher education (Grigal & Hart, 2010), it stands that our models of rhetoric have been little informed by the practices, needs, and preferences of people with

I/DD (doubly so in composition studies, where most of our data about writers and writing come from college-level essays).

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Not only have English and Communication Departments been historically indifferent toward intellectual/developmental disability; traditional models of rhetoric and rhetorical education have played an active role in keeping students with I/DD out.

Colonial American rhetoric’s emphasis on Classical learning was reflected in early college entrance exams: in the 17th century, Harvard admitted students who could read and recite Latin verse and correctly pronounce certain words in Greek (Broome, 1963).

Over the course of the 18th and early 19th centuries, as the curriculum evolved in tandem with socioeconomic and cultural transformation, its emphasis gradually shifted to Belles

Lettres and the cultivation of taste; students were admitted to college who were thought capable of reading Locke, Kant, and Hume and applying their aesthetic and moral theories to literary interpretation (Crowley, 1998). The advent of standardized testing in the late 19th and early 20th centuries, while touted as a modern solution to the obvious class biases of earlier entrance requirements, did nothing to make college more accessible to the students newly classified by the burgeoning field of abnormal psychology as

‘mentally retarded.’2 Instead, the emphasis of assessment shifted from taste to proxy measures of intellectual ability.3

2 In the self-advocacy community, use of “the R-word” is considered a form of epistemic violence. As such, in this instance and throughout the dissertation, I only use it in quotations or when it appears in the title of historical documents/historical contexts. 3 The early IQ tests were touted as a meritocratic solution to these antiquated practices, a scientific salve to the subjectivity of the dreaded college entrance essay. Yet as critics of the IQ movement would point out, the tests were far from unbiased. The strength of even the best IQ tests available today is in predicting a student’s aptitude for abstract, intellectual labor—mathematics, writing, and the like. IQ is, in this sense, a proxy measure of academic potential, but by most accounts an inefficient one.

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If these screening procedures have one thing in common—besides their emphasis on individual verbal prowess—it’s that they kept, and continue to keep, people who are referred to today as intellectually disabled out of college. From the 17th through the early

20th centuries, people with I/DD—who, depending on their verbal capacities, were identified by such labels as “the feebleminded” and “moral idiots”—were confined to almshouses, orphan asylums, penitentiaries, “idiot schools,” and, eventually, large state institutions (Rosen, Clark, & Kivitz, 1976; Trent, 1994). Deinstitutionalization in the

1960s and 70s led eventually to the IDEA and greater access to the public educational system; but, as recounted above, American society continued to offer people with I/DD relatively few opportunities for education beyond high school. These historical patterns of marginalization, segregation, and confinement must be understood as products not just of socioeconomic forces, but of ideologies of higher education itself: as disability rhetoric scholars Margaret Price (2011) and Jay Dolmage (2017) have argued, conceptions of university life as the ‘life of the mind’ are figured in direct opposition to the imagined

‘mindlessness’ of the mentally disabled Other. Partially as a result, the post-adolescent learning of students with I/DD, wherever that learning occurred, has been considered of an inferior status to the education received in the nation’s rapidly growing colleges and universities.

In sum, given rhetoric and writing’s historical development, it is not surprising that the field has remained somewhat distant from the Think College movement and other programmatic efforts to accommodate learners with I/DD. We lack data to determine the precise level of involvement of rhetoric and writing researchers, teachers, writing

10 program administrators, and professional organizations in the growth of TPSIDs. The field’s engagement with I/DD, measured by number of research articles on the subject, remains quite limited overall: a JSTOR keyword search of top journals in the field—

College Composition and Communication, College English, Rhetoric Society Quarterly, and Rhetoric Review—for the term ‘intellectual disability’ yields zero results. This paucity of rhetorical research on I/DD is attributable, in part, to ableist conceptions of disciplinarity that have guided our field’s practices and priorities since its inception.

Because students labeled with I/DD have been denied access to the places where rhetoric and writing scholars work and teach (and, consequently, where much of the field’s data on writers and writing is gathered), intellectual disability has remained a marginal concern. The majority of the rhetoric and writing professional community has apparently accepted the medical model notion that intellectual disability is, in the words of disability studies scholar Michael Gill (2015), a discretely knowable “‘thing,’ a diagnosis that can supposedly be discerned by certified individuals,” and therefore the domain of special education, abnormal psychology, and the medical sciences, not the humanities (p. 11).,

Arguably, these disciplinary biases have led scholars in rhetoric and composition to adopt reductive notions of embodiment in our theoretical models of rhetoric. The earliest references to I/DD in the field’s literature cast it in a decidedly ableist light. I/DD occasionally appears a metaphor for illiteracy, perpetuating cultural tropes that obscure the way that actual people with I/DD practice rhetoric.4 In his essay “The Problem of

4 See Dolmage, 2005; Vidali, 2010 for a more nuanced discussion of disability metaphors in relation to rhetoric and meaning-making.

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Freshman English: What Are Its Dimensions?,” John H. Fisher (1955) quipped that, given trends toward increased enrollment and ‘encroachment’ on college English from other subjects, college writing teachers “could find ourselves shortly left with only sub- freshman English for retarded students” (p. 76). In other contexts, people with I/DD appear in the literature as figures on the margins of debates over their own social worth.

A fracas in College Composition and Communication in response to eugenicist arguments by Richard W. Hall (1972) saw scholars proclaiming the rights and worthiness of people with I/DD without necessarily advocating for greater inclusion at the college level (Schorer, Jamieson, Jamieson, and Schwartz, 1973). In the late 1970s and 80s, when the field’s interest in understanding the role of cognitive functions such as memory and problem-solving in the composing process peaked, discussions touching on disability were not always productive. In a 2000 article in The Journal of Basic Writing, for instance, Patricia Bizzell, criticizing the cognitivist rhetoric of the time, took aim at a study by Andrea Lunsford that used “Piagetian or Vygotskean” theories of cognitive development to explain why basic writers so often rely on personal experience in argument assignments. Such an approach to basic writing, Bizzell claimed, “depicted as cognitively deficient those students who could not produce academic writing that allowed them to succeed in school” (p. 4).5 Bizzell would take up this line of critique yet again in her essay “Composition Studies Saves the World!” (2009), writing of cognitive rhetoric’s

“misuse to diagnose struggling students as mentally retarded” (p. 175). On the one hand,

Bizzell’s warning against taking theories of human development, particularly outdated

5 See also Elbow, 1985 & 1987. 12 ones, too far is important for teachers and scholars of rhetoric to heed. On the other, such critiques unintentionally reinforce a cognitive hierarchy, in which any suggestion of a cognitive difference entailing slowness or lack of linguistic sophistication is a grave insult.

These examples point to some of the unnuanced ways in which I/DD has been marginalized in rhetoric and writing scholarship. Today, the question of what it would mean to construct theoretical models of rhetors and rhetoric that account for intellectual disability as a valid cognitive and perceptual experience remains largely unexplored. For starters, such models would need to move us beyond the medicalized thinking that dominates much of the interdisciplinary research on I/DD and sees it as a fixed entity

“belonging” to people with certain congenital characteristics. Scholars in the interdisciplinary field of disability studies, which promotes and investigates the idea that disabilities are both physically and socially constructed, have put forth much more productive, and accurate, theories of intellectual disability that take into account its sociocultural context (cf Annamma, Connor, & Ferri, 2013; Gill, 2015; Carlson, 2001 &

2009; Erevelles, 2011). Some people experience embodied phenomena classifiable as intellectual disability persistently, for much or all of their lives, in relation to the high- speed demands of advanced industrialized societies. Others of us will experience it temporarily, or only later in life, through modalities such as depression, fatigue, brain injury, malnourishment, drug-induced states, diseases like Alzheimer’s, language barriers, even severe cultural or social disorientation. What would centering such

13 unpredictable, ever-fluctuating cognitive differences in our theories and models of rhetoric look like?

Questions such as these are but one way rhetoric and writing scholars can engage in, and be productively challenged by, the recent historic changes in how students with

I/DD access higher education. Of course, there is also the question of how students with

I/DD are (or aren’t) included in writing classrooms. It is not yet clear just how many students with I/DD are taking college-level writing courses nowadays, how they are being accommodated, and who is teaching them. Nor is it clear to what extent the presence of TPSIDs such as STEP at an institution affects that institution’s general writing curriculum. At EMU, instructors of general education classes typically do not design their syllabi, assignments, or course materials with STEP students in mind, relying instead on the office of Disability Services, and the STEP program itself, to provide necessary accommodations. Some inclusive education advocates have criticized this approach for failing to address barriers embedded in the school’s deep culture, defined by

Jenny Corbett and Roger Slee (2000) as “the hidden curriculum of fundamental value systems, rituals, and routines, initiations and acceptance that forms the fabric of daily life” (p. 140). Simply giving students access to general education classes without also addressing exclusionary practices in the curriculum, the classroom environment, and institutional cultures results in students being merely integrated into settings not designed with them in mind rather than truly included.

I argue that rhetoric and writing is one area where more “deep” cultural change is needed. As scholars of the history of rhetoric and writing studies have consistently

14 pointed out, how we theorize, what we theorize, and what we teach reflect the broader culture we live and work in (Russell, 1991; Faigley, 1992; Miller, 1993; Crowley, 1998).

College composition courses have been particularly susceptible to co-optation by literary studies, industry, and other forces attempting to shape students’ subjectivities. As Sharon

Crowley puts it,

University and college faculty imagine composition as the institutional site

wherein student subjectivity is to be monitored and disciplined. The continuing

function of the required composition course has been to insure the academic

community that its entering members are taught the discursive behaviors and

traits of character that qualify them to join the community. The course is meant to

shape students to behave, think, write, and speak as students rather than as the

people they are, people who have differing histories and traditions and languages

and ideologies (pp. 8-9).

Crowley’s description of the universally required composition course, while somewhat cynical—she would ultimately advocate for its abolishment—bespeaks a powerful vision of rhetorical education as a malleable, pragmatic enterprise not beholden to the agendas of those committed to ableist conceptions of rhetorical excellence. It is this democratic vision of what college rhetoric and writing can be that I seek to build on, and contribute to, with the following analysis.

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I/DD vis-à-vis Disability Rhetoric

Though historical work on intellectual disability’s status in rhetoric and writing studies—as both an object of analysis and an embodied characteristic of teachers, students, and scholars in the field—is important, it is not the subject of this dissertation per se. Rather, my goal is to understand how agency, expertise, and disability itself are co-constructed and negotiated in a Central Ohio TPSID. Through an inductive, grounded theory approach (Clarke, 2005; Charmaz, 2008), I supplement recent theorizations of mentally disabled rhetoric (Lewiecki-Wilson, 2003; Price, 2011 & 2015; Yergeau, 2013

& 2017) by attending to the in situ rhetorical performances of students with I/DD and the professional self-advocates who work on their behalf. Taking the question posed by

Cynthia Lewiecki-Wilson (2003) in her essay “Rethinking Rhetoric through Mental

Disabilities” as its point of departure—“How does thinking through mental disabilities affect our thinking of rhetoric?” (p. 157)—my analysis centers the rhetoric of people with

I/DD with the aim of theorizing a more inclusive rhetorical praxis.

As mentioned above, my primary site/object of analysis is the STEP program, an innovative and influential TPSID situated at a large, public university in the Midwestern

United States (“East Midwestern University,” or EMU). Through interviews and observations of rhetors affiliated with STEP, this dissertation keys in specifically on self- advocacy’s role as a meaningful modality of rhetorical action in determining how learners with I/DD access college and the broader public sphere. I decided to focus on self-advocacy both because of its overtly rhetorical features and because of its importance in larger discussions about access, inclusion, and social participation. Self-advocacy is a 16 cultural site where the hopes and dreams of liberal rhetorical education—that teaching people to communicate well will ultimately contribute to the common good—resonate strongly. Self-advocacy thus refers not only to individuals’ expressions of choices, preferences, etc., but to the way social groups—families, churches, schools, companies— are culturally conditioned to orient to said expressions and act thereon. It is thus a rich space for examining the relationship between communication norms and our own pedagogies and theories.

Historically, rhetors who could not abide by dominant communicative norms for reasons of disability were viewed by the majority of educators as deficient (Stuckey,

2014). Schools used the medicalized language of impairment and defect to sort learners into categories according to their “natural” language abilities. Recently, new theoretical paradigms have made alternative perspectives on non-normative communication possible. In rhetoric and writing studies, conceptualizations of disability as both an identity category (Linton, 1998) and a form of embodied rhetoric and knowledge

(Brueggemann, 1999; Price, 2011; Dolmage, 2014; Kerschbaum, 2014; Yergeau, 2017) have steadily gained wider recognition over the past twenty years. The growth of disability rhetoric as a subfield of rhetoric and writing studies has coincided with increases in the disabled student populations of colleges and universities not only in the

U.S., but globally. Rhetoric and writing now contributes to interdisciplinary conversations on access and accessibility, offering perspectives on accessibility’s rhetorical nature (Yergeau et al, 2013; Dolmage, 2015; Hitt, 2018, Meloncon, 2018) and

17 relation to multiple aspects of text design (Palmeri, 2006; Eyman et al, 2016; Jones,

Moore, & Walton, 2016; Knight, 2018).

While disability continues to gain visibility in the field, there continue to be very few studies and concrete pedagogical/administrative efforts centered around intellectual disability and its relation to rhetoric, though there have been significant studies of learning disability. Patricia Dunn’s Learning re-abled (1995) was one of the first studies of learning disability (LD) in rhetoric and composition to view it outside of a remediation framework, as a legitimate “way[ ] of knowing” (p. 6). A wide-ranging book, Learning

Re-Abled examined contemporary public debates over LD, linked unproductive pedagogical approaches to LD remediation in rhetoric and writing to gaps in the field’s knowledge, and plumbed the writing and learning strategies of LD-diagnosed students for pedagogical wisdom. Linda Feldmeier White’s “Learning disability, pedagogies, and public discourse” (2002), appearing in College Composition and Communication, offered a similar perspective on the learning disability controversy in higher ed, critiquing behaviorist approaches to writing program administration and pedagogy that focused solely on remediation. Around the same time, Brenda Brueggemann’s work on rhetoric, literacy, and d/Deafness directed the field’s attention to traditional, liberal rhetoric/writing pedagogy’s marginalization of ASL and other embodied literacies

(Brueggemann, 1999). A 2001 article published by Brueggemann, Dunn, White,

Heifferon, and Cheu in College Composition and Communication titled “Becoming visible: Lessons in disability” focalized the conjoined concerns of d/Deaf, hard-of-

18 hearing, and LD learners, calling scholars and teachers to radically rethink the implications of such disabilities for rhetoric and writing.

The interventions of Dunn, White, Brueggemann, and others led to a gradual increase in research on rhetoric and writing’s relation to disability, including theoretical studies of rhetoric’s connection to the disabled body (Wilson & Lewiecki-Wilson, 2003;

Miller, 2016), reconceptualizations of accommodation and modification processes for disabled students (Barber Fendley & Hamel, 2004; Lewiecki-Wilson, 2008), and the aforementioned trend toward accessibility as a key component of rhetoric and text design

(Palmeri, 2006; Knight, 2018). However, while many studies from this era focused on learners with LD whose high school grades were strong enough to get them into college, few looked into the learning needs and rhetorical practices of individuals with I/DD.

Cynthia Lewiecki-Wilson’s provocative “Rethinking rhetoric through mental disabilities”

(2003) made this gap in the literature apparent by contemplating the rhetoric of people whose embodiments render them incapable, even temporarily, of rational communication.

Lewiecki-Wilson saw such individuals as posing a radical challenge to “rhetoric’s received [liberal democratic] tradition of emphasis on the individual rhetor who produces speech/writing, which in turn confirms the existence of a fixed, core self, imagined to be located in the mind” (p. 157).6 This line of critique would be furthered by Melanie

Yergeau’s (2013, 2017) work on autistic rhetorics, which similarly perceives a break

6 Interrelated notions of rhetoric and the self are also a theme of philosopher Licia Carlson’s (2001 & 2009) work, which interrogates how philosophical notions of humanness have historically depended on conceptual measures of intellectual and communicative ability.

19 from oppressive liberal rhetorical traditions as necessary for the wellbeing and rhetorical flourishing of autistic rhetors. Recent studies by Margaret Price (2011), Jay Dolmage

(2014), and Tara Wood (2017) have imported DS concepts such as crip time into the field’s conversations about mental disability to help us radically rethink canonical concepts such as metis (Dolmage) and kairos (Price) that shape theoretical conceptions of

“effective” rhetoric. Finally, important work on nonverbal rhetoric, namely Shannon

Walters’s Rhetorical touch: Disability, identification, haptics (2014), has opened up spaces for thinking beyond purely accommodationist and remedial approaches to disability that seek to erase or mitigate the impact of nonverbal rhetoric in the classroom, rather than build pedagogies and learning experiences around it.

While not exhaustive, this review gives a picture of potential directions for rhetorical research on intellectual/developmental disability to pursue. My project, though inspired by Lewiecki-Wilson’s call, does not take up nonverbal rhetoric; nor did the participants in my study exhibit the kind of verbal communication barriers that form the central object of Lewiecki-Wilson’s analysis. Rather, through empirical methods, my study seeks to uncover the complexities of communication involving interlocutors

“negotiating different experiences of complex embodiment” (Kerschbaum & Price,

2017). I hope by doing so to reveal the mixed rhetorical methods and modes whereby disabled rhetors and their interlocutors negotiate access in institutional and public spaces.

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Methodology and Theoretical Framework

To develop an empirical account of these complexities, I mobilize grounded methods within a feminist materialist disability studies framework. Grounded theory emphasizes discovery via abduction (Charmaz, 2008). Grounded theorists analyze their data as they collect it, using recursive, iterative coding techniques that move back and forth between description and analysis. This allows them to continually generate novel interpretations of their findings. While classic grounded theory (Glaser & Strauss, 2017) calls on researchers to suspend their biases, including their knowledge of preexisting theory, constructivist grounded theory views such researcher biases as part of both the context of discovery and the research product, calling upon the researcher to foreground, not ignore, the assumptions underlying their thinking throughout the research process

(Clarke, 2005; Charmaz, 2008). Through theoretical memoing, I documented my evolving biases and interpretations as I collected and analyzed my data. I make no claim to have achieved theoretical saturation, “the point of diminishing returns from any new analysis” (Gasson, 2004, p. 80); certainly, more data is needed to confirm my findings (to whatever extent such ‘confirmation’ is possible). Nevertheless, the conclusions I arrived at about self-advocacy certainly differ from my hypotheses and initial starting points.

Whereas I hypothesized that dominant or hegemonic self-advocacy discourses would impose limitations on rhetors with I/DD’s expressive potentials, I found that the results were in reality more mixed—that students with I/DD and professional self-advocates practice self-advocacy in flexible ways that defy rigid psychological categorizations.

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As a theoretical framework, feminist materialist disability studies (FMDS) offers grounded analysts a scaffold of concepts, constructs, and interpretive lenses to orient their work. I use ‘FMDS’ as an organizing term for a growing body of scholarship that sees feminisms and materialisms as central to the project of understanding disability. In contrast to the older social model of disability, FMDS questions reductive divisions between disability and impairment and seeks to more robustly account for how capitalism, heteropatriarchy, racism, and other systems of oppression interact to

“materialize” multiply marginalized disabled and/or impaired subjects (cf Erevelles,

2011; Titchkosky, 2011; Kafer, 2013; Annamma, Connor, & Ferri, 2013). Moreover,

FMDS critically interrogates some of the bright lines that the social model draws between disabled and nondisabled people through examining the broader effects of ableism and compulsory able-bodiedness/able-mindedness. For example, disability studies scholar

Alison Kafer (2013) points out that “anxiety about aging […] can be seen as a symptom of compulsory able-bodiedness/able-mindedness, as can attempts to ‘treat’ children who are slightly shorter than average with growth hormones; in neither case are the people involved necessarily disabled, but they are certainly affected by cultural ideals of normalcy” (p. 8).

Extended to intellectual/developmental disability, FMDS analysis reveals how intelligence and other features of cognition are constituted through dominant discourses of gender, sexuality, and race. In Already Doing It, a study of the politics of sex education for people labeled with intellectual disability, Michael Gill (2015) notes how intellectual disability—considered as a sociocultural, political phenomenon—can rightly

22 be said to extend beyond congenital conditions such as Down’s syndrome to diseases like

Alzheimer’s and even drug-induced states. While FMDS scholars like Gill do not dispute

I/DD’s ontological rootedness in biological structures and material conditions, they problematize how those structures and conditions emerge through/within dominant discourses such as psychology. Psychological constructs—most notably, diagnoses— shore up supposedly fixed differences between people, making these boundaries appear more rigid than they often are and perpetuating harmful stereotypes. For instance, Gill writes about how mental age, one of the key psychological constructs used to define intellectual disability, “can actively discredit individual choice and perpetuate assumptions about incompetence, childhood, and necessity for protection by prioritizing professional medical authority at the expense of individual desire and epistemology” (p.

38). Similarly, Subini A. Annamma, David Connor, and Beth A. Ferri (2013) argue that disability, mental disability in particular, is co-constitutive with the racial ideologies underwriting white supremacist educational practice in the U.S. and U.K. The overdiagnosis and over-enrollment of Black male students in special education classes evidence the degree to which mental disability is viewed through the lens of race, and vice versa. Psychometric assessments seek to account for racial differences and dynamics in certain ways, but the assumption of a deracinated test subject (the “normal” test-taker) can destabilize educators’ efforts to substantively account for differences in test outcomes for Black students. This is not to say all diagnoses of intellectual disability in Black people and other people of color are invalid; rather, it is an affirmation of the cultural situatedness of diagnostic criteria and the effects of those criteria when they are deployed

23 in contexts where people of color have historically been pathologized (cf Erevelles, 2011;

Dolmage, 2017b).

In short, the words, technologies, and concepts used to fix I/DD as an object of knowledge—what feminist philosopher of science Karen Barad (2003; 2007) refers to as

“the agencies of observation”—invariably shape the meaning, and thus the reality, of what we think of as I/DD. This is not the same as saying that intellectual and developmental disabilities “aren’t real” (a claim that has been used to justify some very exclusionary policies (see White, 2002)), or that people who are labeled as intellectually disabled do not have certain biological impairments that regularly and predictably interfere with their ability to learn or adapt to changing circumstances. Rather, in claiming that knowledge of I/DD (and all disability) is context-bound, FMDS foregrounds the ways in which language and other meaning-making technologies, such as brain imaging and DNA tests, co-construct I/DD alongside material forces such as genetics and brain trauma.

Finally, much like the social model, FMDS scholarship tends to eschew a progressive view of knowledge, through attention to interactions among space, power, and knowledge (cf Hamraie, 2017). This critical view holds that the history of knowledge in any domain is contingent on political, sociocultural, and spatial factors. Michel

Foucault’s (2001 & 2003) “archaeological” critique of western psychiatry, wherein he unearths connections between supposed psychiatric breakthroughs and larger discourses and material practices of institutionalization (confinement), offers one model for this approach. Yet FMDS has also recognized that a strict Foucauldian approach can

24 overcommit critics to monolithic (and distinctly western) theories of power, thus erasing the agency of individual human actors, or in any case obscuring how agency is distributed among humans, spaces, and objects. Along these lines, FMDS is generally critical of discourses that frame access solely in terms of rehabilitation (e.g., discourses that mark access as a way to boost an organization’s productivity). As Aimi Hamraie

(2017) points out, such discourses are paradoxical, in that they “make it possible to imagine a world without disability in it” (p. 13). FMDS posits alternative chronologies, such as crip time, as a critical alternative to the linear temporal logics of curative/rehabilitative discourses.

For a project that is centrally concerned with how people with I/DD exercise rhetorical agency, the epistemological position offered by feminist materialist disability studies seems a rather useful (and empowering) place to start. It reaffirms that intellectually disabled people can exercise control over their identities through language, since reality is materially-discursively constructed. At the same time, it acknowledges the limitations of language and offers a robust critical vocabulary for discussing the corporeal agency of bodies. And it promotes an ethic of care, validating reciprocity and equity in our relationships with research subjects.

One important area where reciprocity is enacted in the I/DD community is in respecting people’s language preferences. Language and labeling have been sources of tension, particularly between those who advocate for person-first language (PFL) and those who prefer to claim an explicit disabled identity. PFL remains the preferred nomenclature used by many I/DD advocacy groups, such as the Arc and the American

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Association on Intellectual and Developmental Disabilities, yet has been questioned by organizations with predominantly disabled leadership, such as the Autistic Self-Advocacy

Network (ASAN). At the heart of the debate lay complex issues of identity, representation, and embodiment (see Simi Linton (1998), Margaret Price (2011), and

Lydia Brown (2014) for a nuanced discussion). Throughout this dissertation, I primarily use person-first language (PFL) when referring to people with I/DD in general, because the self-advocates I worked with for this study encouraged me to do so. When referring to specific individuals, I use their preferred labeling, when known.

Study Procedures

I began my study with three major questions:

1. How do current and former students of postsecondary education services

(PSEs) for adults with I/DD in Columbus, OH express and enact self-

advocacy across various settings (e.g., classrooms, social interactions, job

meetings, etc.)?

2. What are the rhetorical ecologies that bear on the manifestation of self-

determination and self-advocacy as recognizable forms of rhetorical action in

the settings mentioned above? In other words, how do different kinds of

rhetors, “texts,” and contexts interact to produce self-determination and self-

advocacy as recognizable forms of meaning in these settings?

3. Finally, what might people with I/DD and their allies gain from a substantive,

rhetorical theorization of self-determination and self-advocacy? That is, how

might insights from rhetorical studies supplement the substantial 26

psychological literature on these subjects, to the betterment of policy and

practice?

I pursued these questions using traditional qualitative methods. To get at participants’ perspectives on self-advocacy, I conducted semi-structured interviews with both STEP students and professional self-advocates living in the Columbus metropolitan area. My recruitment methods involved in-person and electronic outreach. In February

2017, I began accompanying representatives of the John Dewey Research Center, an

I/DD research center based in Columbus, on trips to the Ohio Statehouse to meet with legislators and other government officials. Through these meetings, I met Christine

Brown and recruited her to participate in the study. I began recruiting STEP students upon institutional approval of my IRB application later that summer. With the help of

STEP staff, I circulated an email to students explaining the project and inviting interested individuals to participate. In addition, I sat in on a handful of STEP classes and made several visits to the STEP tutoring center to introduce myself to students in-person. By these means, I recruited five students and interviewed them in the fall of 2017/spring of

2018. I did not offer participants any material incentives to participate.

Because this study involves people with I/DD, who are sometimes described in human subjects research as having “decisional impairment,” I took additional safeguards to ensure that participants’ rights and autonomy were protected. I encouraged participants to take time to think about their decision to participate, and to consult a parent or other trusted individual if needed. In accordance with best practices, once an individual agreed to participate, I gave them a short questionnaire to double-check their understanding of

27 the consent process and its entailments (Horner-Johnson & Bailey, 2013), which contained the following questions:

• Is participating in this study mandatory or voluntary?

• Can you tell me why we are doing this study?

• What will you have to do if you choose to participate in this study?

• What are the risks and benefits of this study?

• How much will we pay you to participate in this study?

• When can you decide to withdraw from the study?

This afforded opportunities to explain potentially difficult terms, such as “mandatory” and “voluntary,” that appeared in the consent agreements. Participants whom I determined capable of valid consent were then given copies of the consent form for their records.

I assured participants they did not have to answer any questions they weren’t comfortable with, and that they could be assigned pseudonyms in both the final write-up and all publicly available data, if they chose. I explained the risks involved in either choice. I also assured them I would not solicit or publish any private information generally deemed by Institutional Review Boards to be of a sensitive nature (medical information, address, history of trauma or abuse, criminal background, etc.). The five students I interviewed opted for pseudonyms, while Christine Brown gave me permission to use her name.

In scheduling my interviews, I offered to meet participants at a place of their choosing at a time that was convenient to them. I conducted each of the student

28 interviews at “Traditions Hall,” where the STEP program is located. My interview with

Christine Brown was conducted in a hospital cafeteria. I audio-recorded each interview and transcribed the recordings by hand. Though few in number, these interviews offered a detailed look at how my participants both think about and practice self-advocacy. They also provided insight into the authors, texts, technologies, and contexts that co-construct self-advocacy as a recognizable form of rhetorical action in contemporary life.

To enrich my data and triangulate my interview findings, I conducted several observations of professional self-advocate Christine Brown using her self-advocacy skills in three distinct contexts: meetings with legislators and government officials; meetings of the Ohio Self-Determination Association (OSDA); a consumer-led disability rights group advocating on behalf of Ohioans with I/DD; and large public events. I had originally intended to observe the STEP students I interviewed using their self-advocacy skills in meetings with parents, instructors, and staff, but did not have the opportunity. Because my original IRB application did not cover this phase of the study, I submitted an amendment that, when approved, granted me permission to use observations I had already collected and future observations of participants using their self-advocacy skills in public settings. I provided participants with updated consent forms to sign, following these amendments.

In addition to my human subject research, I analyzed a number of documents, including syllabi, self-advocacy training materials, websites and blogs written by professional self-advocates, assessments, and transactional documents such as checklists.

I selected documents that shed light on how self-advocacy is normally practiced and

29 discussed in the I/DD community, in order to understand how various forms of writing factor into student/professional self-advocacy practices. For my study of professional self-advocate Christine Brown, I also analyzed documents used to inform/educate policymakers, which included data tables, executive summaries, and policy briefs.

In each body chapter, I describe the methods I used for that particular part of the study and provide supplementary documentation (interview protocols, open codes, etc.).

Chapter Overview

Chapter 2, “Institutional Recognitions and Student Accounts of Self-Advocacy,” offers an institutional critique focused on the relationship between self-advocacy and academic access at EMU. Through consideration of student accounts of self-advocacy and interpersonal communication more generally, I develop a substantive, grounded theory of self-advocacy’s generic rhetorical features and the institutional logics that shape them. In particular, I am concerned with how generic self-advocacy practices differentially mediate institutional recognition of students’ access needs. I identify four characteristics of institutionally-sanctioned self-advocacy, describing it as a goal- oriented, rational, self-regulated performance of bodily autonomy. In so doing, I attempt to unpack the cultural logics whereby certain self-advocacy strategies are rendered consequential/effective rhetorical acts at EMU while others are not. I problematize equations of disclosure with rational, verbal communication through attending to students’ affective orientations toward disclosing, their various disclosure strategies, and stories of involuntary disclosure. I then discuss good behavior, or self-regulation, as an

30 aspect of self-advocacy with differential consequences for racialized subjects, sharing a story told by a student of color about his encounter with campus security officers.

Thirdly, I discuss assistive technology use in the context of one student’s use of a fluency app called MPiStutter, which helps him monitor his rate of speech in face-to-face interactions. In so doing, I untangle the privileged technologies and modes of communication at the heart of normative self-advocacy practices. Aligning my analysis with Cynthia Lewiecki-Wilson’s (2003) deconstruction of “liberal” models of rhetoric that elevate speech, individual rights, and citizenship as the primary determinants of rhetoricity, I argue that these students’ stories demonstrate how dominant, officialized/institutionally-sanctioned practices and definitions of self-advocacy do not work for everyone, or are not always equal in their effects. The chapter concludes with a list of practical takeaways for teachers/scholars of rhetoric and writing committed to accessibility.

Turning to educational psychology and rhetorical genre theory, Chapter 3,

“Scientific Self-Determination: Measuring Selves through Technoscientific Text

Ecologies,” takes us deeper into the fabric of the institutional logics discussed in Chapter

2, magnifying a set of texts and textual practices whereby culturally sanctioned forms of self-advocacy take root. In particular, it interrogates the ways technoscientific writing practices naturalize self-determination and self-advocacy, elevating their status as normalized constructs to which all people supposedly aspire. The chapter’s primary object of analysis is The Arc’s Self-Determination Scale (SDS), a psychometric test that

STEP students are required to take in their first semester to assess their level of self-

31 determination. Developed in the 1990s (and subsequently expanded/revised) to empower students with I/DD to become more self-determined, this testing technology, I argue, has inegalitarian consequences for praxis—defined by Natasha Jones (2016) as “an essential, not-to-be separated pairing of reflection and action” (p. 224)—empowering test administrators to make claims about students’ self-determination independently of the students’ own self-advocacy practices. To understand how the SDS places constraints on praxis, I analyze how the authors of the SDS deploy two textual practices, citations and hedging, across various documents involved in the assessment process, including scholarly articles, test protocols, and test manuals. Adopting a praxis-oriented approach to scientific communication, I argue, can help rhetorical critics and technical communicators understand practices such as citation and hedging as not merely epistemic, but pragmatic, literally productive of social relations.

Returning to Chapter 1’s focus on the relationship between self-advocacy and accessibility, Chapter 4, “The Professional Self-Advocate: Toward an Accessible Public

Sphere” widens the project’s lens to analyze the role of professional self-advocacy in creating an accessible public sphere for people with mental disabilities. It follows the public advocacy work of Christine Brown, a professional self-advocate working to build legislative support for programs like STEP across Ohio. Through an interview with Ms.

Brown and analyses of her rhetorical performance(s) in meetings with legislators, gatherings of the Ohio Self-Determination Association, and as chief planner of the 2017

Franklin County Board of Developmental Disabilities Legislative Advocacy Day, I construct an in situ account of professional self-advocacy’s circulation in/through

32 traditional public spheres. I contextualize the stakes of Ms. Brown’s public rhetoric by situating it in relation to the disability rights organization ADAPT’s nationwide protests against the U.S. Congress’s attempted repeal of the American Affordable Care Act in summer 2017. Ms. Brown’s rhetoric, characterized both by her legibility as a person with a disability and by many of the institutionally-sanctioned markers of self-advocacy critiqued in Chapter 2 (goal-oriented, rational, self-regulated, and autonomous), secures meaningful access to deliberative procedures/processes, preventing policymakers from simply using these processes as a space of retreat from public view. Using rhetorical circulation theory to attend to the agentic effects of Ms. Brown’s advocacy, I conclude that the strategic ‘circuits’ carved out in public deliberations by professional self- advocates like Ms. Brown are spaces of unique rhetorical power.

Finally, in Chapter 5, “Emergent Theory, Emergent Access: Bridging the Gap

Between Theory-Building and Access-Building in Grounded Methodology,” I reflect on what conducting this study revealed to me about the affordances and limitations of grounded theory as a “method of emergence” (Charmaz, 2008). I consider how competing definitions of emergence as epistemic (arising from academic concerns such as research questions, scholarly literature, etc.) and relational (arising from my social embeddedness in the research site) shaped the outcome of my study. Invoking feminist materialist disability studies writings on methodology, in particular the work of Stephanie

Kerschbaum and Margaret Price on qualitative interviewing (2017), I offer access- oriented emergence as a guiding concept for qualitative research in disability studies. An access orientation, far from ‘simply’ attending to the access needs of both researchers and

33 participants, can be a guide for theory-building as well, revealing gaps in our scholarly understanding of communication phenomena such as self-advocacy. Following this chapter, the dissertation concludes with a brief discussion of how attending to the rhetoricity of students with I/DD changes, or ought to change, our scholarly assessments of the place of credibility in collaborative communication.

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Chapter 2. Institutional Recognitions and Student Accounts of Self-Advocacy at a Large Midwestern University

Introduction

Employers and educators consider self-advocacy an essential skill for students and workers with disabilities (Bates & National Adult Literacy and Learning Disabilities

Center, Washington D.C., 1997; Herrington, 2006; Grigal & Hart, 2010; Quinn, 2016).

This is especially the case in countries such as the U.S., whose disability policies tend to emphasize litigation, and therefore advocacy, over legislation as the primary means whereby disabled individuals are included in the workforce. According to laws such as the Americans with Disabilities Act (ADA), students and workers are expected to “speak up” when they encounter an obstacle to their participation. Critics of this liberal, advocacy-driven approach to accessibility have argued that it can place too great a burden on disabled individuals, who in many cases undertake considerable risks to their reputations—and sometimes, their physical safety—to have a chance of receiving necessary accommodations (Erkulwater, 2006; Price, 2011; Freedman, Eisenman, Grigal,

& Hart, 2017; Konrad, 2018). In higher education, many have argued for Universal

Design for Learning (UDL) as an alternative to advocacy-driven approaches (see

Dolmage, 2015; Hitt, 2018). Yet even when designers solicit input from disabled users, their plans, no matter how well laid, inevitably fail to anticipate the needs of some

35 disabled individuals, making self-advocacy to some degree necessary (see Hamraie,

2017).

In this chapter, I attempt to engage the question of who is responsible for self- advocacy by taking a step back and asking: What is self-advocacy? Specifically, how do college students with intellectual/developmental disabilities (I/DD) define self-advocacy, and how do they talk about it? Secondly, how does self-advocacy, as students conceive of it, actually mediate access to learning environments, curricula, and campus life? In situ student accounts can offer teachers and researchers non-hegemonic perspectives on self- advocacy that can challenge and expand dominant conceptions of self-advocacy and its effects. Through interviews with five students in East Midwestern University’s (EMU’s)

STEP program (short for Self-Determined Transitions and Educational Progress) during the 2017-2018 academic year, I develop a substantive descriptive account of self- advocacy’s generic features. I attend also to how these students described the outcomes of their self-advocacy.

In particular, I am concerned with how self-advocacy functions in these accounts as a means whereby students achieve recognition of their subjectivity. I mobilize the concept of recognition logics to discuss the locally specific institutional and cultural norms that render certain self-advocacy strategies consequential (or effective) rhetorical acts and others not. Attending to these norms, I argue, is one way to advance understanding of accessibility’s social and cultural dimensions, in the classroom and beyond. In addition to the student interviews, I analyze other discursive instantiations of everyday self-advocacy discourse: a blog, position statements, online resources for self-

36 advocates and their families, university webpages, and a self-advocacy training manual.

Such critical inquiry into everyday textual objects leads to a richer understanding of the rhetorical contexts that co-constitute how self-advocacy materializes in the university— the human actors, material artifacts, spaces, social processes, and institutional protocols that together make self-advocacy meaningful and recognizable as a legitimate rhetorical act.

Of course, given my non-representative sample size and methodology, this data’s primary value is descriptive, heuristic, and exploratory. Nevertheless, my analysis of these accounts and artifacts strongly suggests that dominant, institutionally-sanctioned practices and definitions of self-advocacy do not work for everyone, or are not always equal in their effects, depending on factors such as gender and racialization. While self- advocacy as it is conceptualized within the disability community can take many forms, institutionally-sanctioned self-advocacy strategies are rooted in the following cultural logics (and practices) of recognition: the valorization of purposive over passive behavior; the elevation of rational discourse over affectively charged utterances; and the privileged status of face-to-face conversation as compared to mediated interaction. For students with

I/DD, many (but by no means all) of whom struggle with speech and self-regulated behavior, institutionally-sanctioned strategies might not always be the best available means of achieving access. It is therefore incumbent on educators committed to accessibility and inclusion—including teachers of rhetoric and writing—to rethink pedagogical norms that, even if unintentionally, reinforce institutional reliance on self- advocacy as the guarantor of access.

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Background

Official definitions of self-advocacy reveal the concept’s rootedness in western notions of rights and recognition. Whereas Cunconan-Lahr and Brotherson (1996) define it with respect to individual needs as “one form of advocacy, occurring any time people speak or act on their own behalf to improve their quality of life, effect personal change, or correct inequalities,” prominent I/DD organizations such as the Autistic Self-

Advocacy Network (2018) and the Arc (2014) have issued position statements emphasizing self-advocacy’s representational aspects, defining it as the act of speaking on behalf of oneself or one’s identity group to achieve personal or political change. Other definitions invoke the idea of rights as central to self-advocacy. Lehr and Taylor (1986), for instance, write that that to practice self-advocacy is “to speak up for yourself, to make decisions for yourself, to know what your rights are and how to ‘stick up’ [for them] when your rights are being violated or diminished” (p. 3).

The philosophical concept of recognition offers analysts a means of explicitly theorizing/thinking through how self-advocacy mediates access in public spaces.

Scholars have characterized recognition as an intersubjective psychic phenomenon whereby subjects become aware of the subjectivity, and thus the autonomy, of others (see

Brandom, 1998; Tomasello, 1999; Hobson, 2002). Societies confer recognition on their members through institutions such as courts and the police, which recognize individuals’ rights to live and be in particular ways (Taylor, 1994). Such rights-based recognition comes at a price, however, as marginalized groups and individuals face pressure to

38 emulate the dominant culture’s customs, speech, etc., simply to achieve recognition of their autonomy (Fanon, 2008; Hesford, 2015). Failure to fulfill these rigid cultural protocols can result in misrecognition.7 For instance, many legal adults with intellectual disabilities who do not conform to behavioral norms are misrecognized as childlike or potentially violent, resulting in social marginalization and, in many cases, bodily harm at the hands of police and other state actors.

The self-advocacy model of access sees linguistic capacity and communicative competence as the primary sources of one’s social recognition. Self-advocacy is overwhelmingly conceived of as a verbal art, with the speech act (Austin) as its primary modality, although self-advocacy training manuals also note the importance of nonverbal communication to effective self-advocacy. Students with disabilities are taught how to

‘do things with words,’ specifically, to conceptualize and verbalize their needs, their strengths, and their weaknesses to an audience typically consisting of instructors, employers, service providers, and/or peers. In order to articulate their needs, students are taught to become intimately familiar with their disabilities and the limitations these place on their learning. In an article for wrightslaw.com, a popular self-advocacy resource, professional dyslexic self-advocate Nancy Suzanne James (2014) recommends students pursue such self-knowledge via diagnostic testing; learning about their rights; and learning about the interventions, accommodations, and modifications available to them at their institution and how these may be accessed. In addition, she suggests concrete

7 Some have argued that successfully fulfilling a society’s dominant standards results in misrecognition, too, insofar as it is not one’s individuality that has been recognized, but a performance. See Fanon, 2008.

39 practices self-advocates can follow to ensure their rights are respected, such as documenting interactions and email conversations with service providers. These strategies for learning disabled students are generally recommended for students with

I/DD also.

Once students have achieved a sufficient level of self-knowledge, they are taught the means of expressing that knowledge, frequently through face-to-face speech interactions (e.g., approaching their teacher after class or during office hours to explain they have a disability and will be seeking accommodations through the college’s

Disability Services office). This emphasis on speech is a problem for many students with

I/DD, who can struggle with the sort of complex verbal acts typically associated with self-advocacy.8 (This is not necessarily the case with STEP students, who tend to be ‘high functioning.’) As a result, many training resources focus on stock phrases students of all ability levels can easily master. The website understood.org, for instance, provides visitors a list of “sentence-starters” categorized according to the self-advocate’s age and disability. Each sentence starter takes on a common problem and provides the visitor with a script they or their child can follow to address the problem with different audiences

(teacher, IEP team, and so on). For example, the site prompts middle schoolers with

ADHD who have trouble remembering to take home their books to ask their teachers, “Is

8 The causes of a particular student’s struggles with/resistance to self-advocacy are always complex.

Difficulties with communication can be sensory in nature or personality-based. I therefore generally avoid speculation about the causes of students’ struggles with self-advocacy in this chapter.

40 it possible to get an extra copy of the textbook to keep at home?” (The Understood Team, n.d.).

While understood.org exemplifies the tendency of self-advocacy resources to conceptualized communication as verbal, other resources play up self-advocacy’s embodied dimensions. The Ohio Self-Determination Association (OSDA) uses a document called The Speak Up Guide9 (n. d.) to train people with I/DD how to think and talk about their disabilities in a way that attends to the significance of nonverbal communication, while still emphasizing self-knowledge. Further, The Speak Up Guide exemplifies the tendency of self-advocacy training materials produced in the U.S. to attach notions of effective communication to productive citizenship. In my interview with professional self-advocate Christine Brown, whose advocacy work is the subject of

Chapter 4, I asked about her use of The Speak Up Guide in a training program for

Ohioans with I/DD called Project STIR (Steps Toward Independence and

Responsibility). She explained that the first chapter of the guide, “Knowing Yourself,” includes an exercise called “Right On and No Way!,” in which participants are given a list of activities and asked to place a check next to the ones they enjoy and an ‘x’ next to the ones they do not enjoy. Similar exercises are used to teach participants how to describe their strengths, skills, and “challenges.” Role plays and drawing activities are suggested as methods for helping participants practice different ways of representing

9 The Speak Up Guide is published by STIR (Steps Towards Independence and Responsibility) and Shifting the Power, both initiatives of the University of North Carolina Clinical Center for the Study of

Development and Learning.

41 their disabilities in different situations, with emphasis placed on talking to employers.

One section reads:

Tell students that you understand that it is not easy for them to talk about their

disability; but, in order for the Americans With Disabilities Act to work, they may

need to tell an employer about their disability in a way that the employer will

understand. The employer will not be interested in the name of the disability

necessarily, but will want to know where it might cause problems on the job and

what a person’s needs are to be successful on the job (p. 17).

The Speak Up Guide thus makes links between the rhetoric of self-advocacy and dominant, rights-based legal discourse explicit. Passages such as this, which presume participants will have (a) an understanding of the ADA and (b) a working knowledge of their disability diagnosis, promote a vision of the self-advocate as a lawful, working citizen who accedes to medical authority and contributes to the good of their community.

Further, passages such as this do not appear to account for the experiences of undocumented workers, who might be understandably hesitant to talk to their employers about their disability status. The Speak Up Guide thusly configures self-advocacy as a process of learning how to make one’s needs and desires intelligible—recognizable— through language that appeals to normative political and cultural values.

Christine explained that in Chapter 2 of the guide, “Communicating Assertively,” participants are taught that there are three ways of communicating: non-assertive

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(Christine used the word “passive”), assertive, and aggressive. Her role, as she describes it, is to teach people to communicate assertively. The activities in the guide dealing with assertive communication characterize it as both a verbal and embodied art. “You are assertive,” the guide says, when you “stand up for what is best for you,” “make sure other people understand what you need or want,” “openly and honestly express your ideas and feelings,” “respect other people’s rights and ideas,” and “listen to other people.” While these subcomponents of assertive communication are neither explicitly verbal nor explicitly nonverbal, some of the guide’s advice, such as “stand tall,” “look people in the eye,” and “listen with interest,” reveal a decidedly able-bodied (and arguably, ableist) vision of self-advocacy as entailing certain forms of bodily comportment (p. 12). Of course, not having observed Christine use the guide, I can only speak to the wording of the text and not its use in practice. The larger point is that The Speak Up Guide promotes certain embodied forms of communication (standing tall, speaking clearly) as preferable to others (slouching, mumbling, stimming).

These resources offer a taste of how members of the I/DD community teach one another strategies for achieving recognition of their learning needs in predominantly nondisabled settings. The overwhelming emphasis such strategies place on speech is not without exception. The Autistic Self-Advocacy Network (2018), for instance, defines self-advocacy with regard to multiple modes of expression, such as nonverbal communication and assistive communication via interpreter or electronic device.

Nevertheless, acquiring verbal language skills remains the dominant path whereby rhetors with I/DD are ascribed rhetoricity.

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Methods

I interviewed five STEP students during the 2017-2018 academic year. The interviews, which ran from 40 to 60 minutes a piece, were audio-recorded and covered topics related to self-advocacy and interpersonal communication more generally. I asked each interviewee some combination of the questions below (see Appendix A). The questions were designed to be open-ended and generative.

1) Where are you from?

2) How long have you been in the STEP program?

3) Tell me about a time you asserted/stood up for yourself.

4) Tell me about a time you asked for help.

5) How do your conversation skills help you achieve your goals?

6) Do you find you have to talk to people in different ways, depending on the

situation, to persuade them or get them to understand you? How so?

7) Do others help you assert/stand up for yourself? Who are they? Can you tell me

about a time someone helped you assert/stand up for yourself?

8) Tell me a little about how you like to communicate.

Given my interest in students’ definitions and stories of self-advocacy, I placed particular emphasis on questions #3 and #4. I would sometimes lead into these questions by asking “could you tell me what self-advocacy means to you? What do you think of

44 when you think of that word?” As the students told their stories, I interjected when I thought it might be useful to clarify a meaning or make a connection to an earlier statement. If the student struggled to define self-advocacy, I would steer the conversation to an adjacent topic (disclosure, independence, “speaking up,” “standing up for yourself,” etc.). To make the students comfortable, I prioritized the flow of the conversation over asking every question in my protocol.

It might be pointed out that my interview questions bear traces of the recognition logics previewed above, framing self-advocacy as ‘standing up for oneself’ and emphasizing face-to-face conversation. This no doubt influenced students to talk about self-advocacy in particular ways. A different set of questions might have done a better job soliciting ‘non-hegemonic’ responses. Because my interest in recognition is in its functioning as an intersubjective process, however, I did not consider this to be too much of an issue. To be sure, I was and am an equal participant in circulating the officialized understandings of self-advocacy ‘contained’ in the students’ accounts. Particularly as a late-twenties, white, cis, able-bodied, neurotypical man, a graduate student, and a teacher of one of the participants, I occupied a position of power and institutional privilege in these interactions. My speech acts, whether asking a question, introducing a definition, or clarifying a term, had a kind of institutional authority and legitimacy the students could not claim. I attempted to be conscious of these power dynamics during the interviews and sought to mitigate my influence on the conversation by striking an invitational tone, usually interjecting just to affirm or clarify. Still, even my clarificatory contributions to the conversation (e.g., “So would you say that you practice self-advocacy in your life?

45

Do you use self-advocacy for your own goals?”) bear traces of the institution’s recognition logics. Of course the students, as seasoned self-advocates, could readily claim an ethos and an expertise I could not; it would be reductive to assume they did not also exercise power and agency in our interactions. In short, these students’ ‘accounts’ of self- advocacy are not strictly their own. They are dialogic and co-constructed.

I coded my transcripts using a grounded theory approach revolving around comparative analysis of data, codes, and code categories (Glaser & Strauss, 1967). As explained by Kathy Charmaz (2014), the fundamental tenets of grounded theory are the minimization of preconceived ideas, the pursuit of simultaneous data collection and analysis, remaining open to varied explanations, and a focus on constructing “middle- range” theories (as opposed to global explanations) of phenomena. As I began my analysis, I was primarily interested in the transcripts’ thematic content, not so much in their interactional features (see Chapter 5 for a critical reflection on this choice). As I worked my way through the transcripts, comparing them to one another and memoing about my findings, I moved from descriptive, “action-oriented” coding to progressively more analytic coding.10 In particular, I employed a strategy that Gasson (2003) refers to as “axial” coding or ‘dimensionalization,’ the grouping of codes into categories along continua of similarity and difference. This led to the emergence of categories denoting what might be termed broad discourse features, or generic properties, of self-advocacy

(see Table 2).

10 Charmaz (2008) writes that action-oriented codes help the researcher “see implicit processes, […] make connections between codes, and […] keep their analysis active and emergent” (p. 164).

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Participants

Demographic Characteristics

The participants—whom I refer to pseudonymously as John, Philip, Devin, Blake, and Charles—were all first-year college students at the time I interviewed them. All are cis men,11 and four out of five are white. I had one of the students, John, in a class I taught in the fall 2017 semester. My efforts to recruit a more diverse sample did not pan out; the number of students in STEP is limited to begin with, and there were more male- than female-presenting students enrolled at the time of my study. Though my analysis does not explicitly attend to participants’ gender, these accounts are undoubtedly gendered in complex ways. Similarly, I do not attend to participants’ socioeconomic status. In general, I did not solicit any information about participants’ incomes or that of their families, though the data suggests that they are from middle to high income households. Three grew up not far from the university, one in a neighboring state, and one in the southern United States. All spoke English fluently. Though it’s a state school,

East Midwest U is not cheap, particularly not for out-of-state students. (It should however be noted that STEP students can qualify for Pell grants thanks to changes to the 2008 federal Higher Education Opportunity Act, opening participation to lower income students). At least one participant reported attending an exclusive private high school for

11 While I do not conduct an analysis of self-advocacy’s relation to masculinity here, such an analysis is needed and would certainly be warranted, given my sample characteristics.

47 students with developmental and learning disabilities, where he said he received excellent, individualized instruction. Others reported attending schools with limited or ineffective disability services.

All five participants have a disability or combination of disabilities including autism, ADHD, dysgraphia, dyslexia, and bipolar. As a rule, I did not ask participants about their diagnoses unless they brought them up first. Nor did I frame any of my initial questions in terms of disability (e.g., “Does your disability affect how you communicate?

If so, how?”). There were multiple reasons for this. I assumed participants would have differing affective orientations to their diagnoses, as is frequently the case in the I/DD community, and in the interest of earning their trust I did not want to put pressure on a topic they might find uncomfortable. Above all, I wanted to resist reifying a medical taxonimization of the participants. Diagnostic labels operate as powerful “terministic screens” (Burke, 1965) that can significantly influence the course of a conversation, giving power to medicalized ways of perceiving (a la Foucault’s (2003) “clinical gaze”) that can be dehumanizing. 12 In light of diagnosis’s dehumanizing potential, Melanie

Yergeau (2017) has written that self-diagnosis can itself be a kind of self-advocacy, an act of reclaiming the discourse whereby one’s bodymind is rendered legible. “Through diagnosis, autistics are storied into autism [….]. Through diagnosis, nonautistic stakeholders become authorized as autism somethings—as autism parents, as autism

12 Similarly, disability studies scholar Ellen Samuels (2014) writes of the dehumanizing “diagnostic gaze” government bureaucrats are empowered to assume when evaluating applicants for parking permits and other accessibility services (p. 132). Such accounts are reminders of the rhetorical force of diagnostic language filtered through systems of power. 48 researchers, as autism therapists and specialists and mentors and advocates” (p. 2).

“Claiming rhetoricity, claiming self-definition […] all of these claims, in some way, defy autism’s clinical categorizations” (p. 167).

Of course, there are drawbacks to this approach. Paradoxically, diagnosis’s status as a taboo topic results in many members of the public having little to no empirically- grounded knowledge of diagnosis apart from what is generally known through cultural representations. This dilemma can trap people with disabilities, people with “invisible” disabilities especially, between a rock and a hard place: medical overdetermination on the one hand, ableist silencing and presumed normalcy on the other.

Prior and Emergent Experiences with Self-Advocacy

Many STEP students arrive at East Midwest U well-practiced in self-advocacy; others have less experience. Experience levels vary depending on a range of factors, from disability to personality to school quality to level of parental involvement. Regardless of prior exposure to self-advocacy, all STEP students learn about the concept and practice it through a common set of program experiences. First-years are taught about self-advocacy in coursework, particularly two required courses that most take their first semester,

“Independent Living and Personal Adjustment” and “Career Exploration and Workplace

Readiness.” During the first year and beyond, students develop self-advocacy plans that summarize “their personal characteristics, program experiences, and transition goals.”

Crafting these documents is preparation for the students’ Person Center Planning (PCP) meetings, a modified version of the Individualized Education Program (IEP) meetings students with disabilities are required to attend in elementary, middle, and high school. In 49 the PCP meeting, the student talks about their academic progress with teachers, staff, parents, and other members of their support team. They then set “SMART” goals (short for Specific, Measurable, Achievable, Relevant, and Time-Bound) for the semester ahead pertaining to academics, career exploration, social life, and independent living. Students are expected to lead the PCP meetings, to set the agenda and address questions and concerns from the attendees. Finally, students learn public engagement through their internships and by completing 25 hours of community service. Collectively, these activities are designed to familiarize students with their strengths and weaknesses, to help them develop goals, and to give them opportunities to practice self-advocacy in public settings.

Findings

Table 1 situates the participants’ descriptions of self-advocacy (what it is, how they perform it) in rhetorical context, focusing in particular on the spaces where the participants reported engaging in self-advocacy; the technologies/modalities whereby said engagement occurred; and the other (human) actors involved. This three-dimensional picture of in situ self-advocacy practices provides some indication of the rhetorical complexity of self-advocacy: the many rhetorical situations wherein it is invoked, the multiple, diverse audiences self-advocates must engage with, and the rhetorical strategies and tactics students employ when practicing self-advocacy.

The range of definitions and approaches in Table 1 suggest that self-advocacy, rather than an exact method, functions in practice as a kind of rhetorical topos where

50 students with disabilities can turn for different kinds of arguments and stances in navigating their everyday lives. Blake, for instance—who defines self-advocacy as

“standing up for myself in any situation whatsoever”—sees it as a tool for navigating conflict; Charles, on the other hand, sees it as a method of self-exploration. What these diverse approaches seem to have in common are certain formal similarities, or generic properties. Specifically, I identified four properties of self-advocacy that seem to bear on the success of participants’ self-advocacy strategies in the institutional context of EMU.

First, such ‘institutionally-sanctioned’ self-advocacy is goal-oriented, often revolving around objectives that students set for themselves and their visions of the future. Second, it is rational, requiring students back up their requests for access, accommodation, and recognition with credible arguments. Third, it involves self-regulated embodied performance of competence and social sensitivity (good behavior). And fourth, it centers cultural notions of independence: that is, an emphasis on the self-contained, individual body as the source of authentic communication. In Table 2, I provide a definition, representative codes, and representative data for each category. My open codes and code categories can be found in Appendix B.

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Table 1 Self-Advocacy: Definitions, Modalities, Situations

Student Definition Rhetorical Modality Situation Blake “Standing up for myself in Dispute with Speech – any situation whatsoever.” manager at work problematizing rhetoric, Letting others know when Self-defense from argument they are hurting/wronging bullies in gym class (reasons) you in some way

Charles “[I]ndependence… what Trying a new hobby Speech – you do, and what you try to questions, achieve… tak[ing] care in Joining a campus explanations yourself, or like, having a club set of goals or [sic] Expressions of yourself.” self through creative work Exploring interests, asking for help, requesting accommodations

Devin Asking for help, requesting Calling a meeting to Speech – accommodations, letting resolve dispute with problematizing others know when they are tutor rhetoric, hurting/wronging you in argument some way, justifying your Telling a stranger (reasons) actions to authority figures, who is bothering standing up for your rights you to leave you Writing – text, alone email

John Asking for help, standing up Asking a teacher for Speech – and speaking out, help with an questions, disclosure, deciding who to assignment explanations trust

Philip Asking for help, admitting Admitting you need Speech – vulnerabilities, requesting help with an questions, accommodations assignment in class explanations

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Table 2 Indicators of Institutionally-Sanctioned Self-Advocacy at EMU: Codes and Definitions

Category Sample codes Example from data Self-advocacy as goal- Exploring interests; Charles: [W]hen you get to college, you’re oriented talking about goals; just like ‘I wanna be this!’ But then all of a talking about the future; sudden you’re just kinda like shifting to a Definition: Conceptions of self- talking about making different topic.. I want to do [occupational] advocacy as purposeful, choices therapy, but also I wanna write books as intentional, and/or planned well … it’s just kinda that thing I’m kinda going for right now. Antithesis: Passivity Self-advocacy as rational Problematizing/critique; Blake: I had… there was a guy [at work] explaining need for who was consistently lazy and picking on Definition: Conceptions of self- accommodation; me, and I was like… ‘you… make advocacy as consisting partially identifying solutions to everyone else work hard, but you don’t do or primarily of rational speech a problem; reflecting on squat, and then you want us to, like, be forms such as arguments what is helpful; friends with you and be nice to you, it’s comparing prior and not gonna happen.’ Antithesis: Irrationality emerging experience Self-advocacy as self- Talking about Devin: And I ask her [ed coach], like, very regulated embodied communication style; nicely. I’m not trying to get mad at you, performance tone; using gesture and I’m just sayin like, I ask her for my goals sound effect; using and I ask her to show me them at the Definition: Conceptions of self- politeness; using humor academic center, and then email me it. advocacy as a kind of to build relationships Only thing she emails me is my… notes… monitoring or regulating of one’s public behavior in accordance with hegemonic notions of competence and social sensitivity

Antithesis: Violent, involuntary, or disruptive behavior Self-advocacy as independent Defining independence; Sean: Do you have to be more independent talking about dealing [now that you’re in college]? Definition: Conceptions of self- with an academic John: Yes advocacy as originating within struggle independently Sean: Okay. Can you tell me a little more individual bodyminds, free about that? from external influence John: Being independent is doing things the right way by yourself… I try that, but Antithesis: Other agents it’s a little hard for me… (human or non-human) Sean: [W]hat’s hard? “speaking” or acting on one’s John: The notes… Writing neatly. behalf

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Analysis

Exploring Interests and Setting Goals

The STEP program promotes the idea that self-advocacy is goal-driven: specifically, that it is purposeful, planned, and future-oriented. Throughout their EMU careers, students continuously work on their SMART goals, which they share with teachers, staff, and parents at the PCP meetings. They are taught that self-advocacy is a means to achieving these goals, whether securing classroom accommodations, learning their way around campus, or making new friends outside the STEP program. Two participants in particular, Charles and Philip, spoke at length about their personal interests and goals, identifying self-advocacy as a means of achieving them. When I asked Charles

“what is self-advocacy to you?”, he replied

I think it’s independence… I mean, mostly like what you do, and what you, uh,

try to achieve? I mean, goals? That’s what I think about it… Mostly just kinda

like take care in [?] yourself, or like, having like a set of goals for yourself.

According to Charles, self-advocacy involves working independently, having a goal, seeing things through, and getting others to help one in their pursuits. It means doing “independent stuff” like getting to the bus on time, making your own meals, and getting a job. But it also means discovering activities one finds genuinely meaningful and enjoyable, and engaging in those activities with specific outcomes in mind. When I asked him if he used self-advocacy “for his own goals,” he replied that the previous summer, 54 he’d written and self-published a novel. As he explained, he fell into fiction writing shortly after moving to EMU’s campus as a way to pass the time awaiting the first week of class. When I asked him how writing was self-advocacy, he explained that he had “put a lot of work” into the book and that he had successfully convinced a friend to help him by designing a cover. By the time of our interview, Charles’s foray into fiction had budded into a habit; he was both working on a video game review for the EMU student newspaper and contemplating turning his book into a series.

In some respects, Charles’s definition of self-advocacy bears closer resemblance to the psychological definitions of self-determination discussed in Ch. 3 than to more widely accepted definitions of self-advocacy. Educational psychologist Michael

Wehmeyer (1992, 1995)—author of The Arc’s Self-Determination Scale, which STEP students are required to take their first semester—quoting self-determination theorists

Deci and Ryan (1985), defines self-determination as “‘the capacity to choose and to have choices be the determinants of one’s actions’ (p. 38)” (1992, p. 303). The connection

Charles draws between goals and independence certainly echoes Self-Determination

Theory’s emphasis on recognition of individual choice. Wehmeyer explains that self- advocacy and self-determination are conceptually related, but that self-advocacy refers to the rhetorical tools one uses to exercise their self-determination, not to choices, preferences, mental state, and so on. Regardless, the connections Charles has drawn here suggest an intriguing possibility: that feats of self-exploration are themselves forms of self-advocacy. Thinking through this connection would later lead Charles to posit that self-advocacy involves a kind of exchange of inspiration:

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[W]hat else can I say about self-advocacy? I mean like, I guess there’s like certain people that can

like, motivate you or something… Like celebrities… [B]asically it’s like a trend or something…

think of us as sheep… And we have… our farm herder. You see the farmer gives us… hays of

information… And then, we’re just like, we see the hay, we start getting into it, we like it. Then all

of a sudden he gets… gives us a new stack of hay… some of us, we would look at it and we might

not be interested, but then all of a sudden we see… our other friend sheep going over there and

we’re just like ‘yeah, we’ll go over there as well’… It’s kinda like peer pressure, almost, but… it’s

mostly kinda like getting into [?] a new thing.

While the sheep metaphor carries certain pejorative undertones, my sense is that

Charles did not intend it to be pejorative per se—if anything, his tone was playfully ironic. Charles’s unconventional, metaphoric take on self-advocacy opens up new spaces, new avenues to exercise rhetorical agency. Under such a rubric, self-advocacy isn’t simply a collection of generic speech acts or a set of scenarios for one to master; it’s an orientation, a way of accounting for the processes whereby one fashions an identity and influences the identity-formation of others. This self-advocacy-as-orientation echoes vitalist/new materialist theories of rhetoric (e.g, Edbauer, 2005; Hawk, 2007; Rickert,

2013; Gries & Brooke, 2018) that foreground relationality as an essential condition of rhetorical performance, circulation, and exchange. It is a perception of self-advocacy that’s purposive and propulsive, if not future-oriented per se—a kind of feeling out of one’s environment for sources of influence and inspiration.

If Charles’s take on self-advocacy emphasized its goal-oriented nature while playing up a kind of presentism, an in-the-now attunement to shifts in one’s consciousness, Philip’s take was more explicitly future-oriented. He talked extensively 56 about his side job as a musician and his dream of one day going pro. By joining the STEP program, Philip’s goal was to learn the independent living skills he will need to be successful professionally and financially, self-advocacy most of all (Philip would identify self-advocacy as “the best life skill I’ve learned”). Philip’s goal-oriented approach to both school and his leisure time, combined with his charisma and strong verbal skills, mark him as an exceptional self-advocate in a rhetorical environment where self-directed, purposive, teleological behavior is systematically rewarded. Indeed, students who can articulate their passions and desires and act upon them, as Philip and Charles can, are in a better position to benefit from the services, programs, and opportunities the modern university offers. Yet while potentially productive for many students, conceptions of self- advocacy as fundamentally purposive can make passive, disinterested behavior seem problematic by comparison. Indeed, claiming goals and interests for oneself is a way of proving one belongs on a college campus.

Using Rational Discourse to Find Help and Avoid Harm

In addition to emphasizing self-advocacy’s purposiveness, the students framed it as a method of explanation and problem-solving, a rational art. Recognition of rationality is especially urgent for students with I/DD, whose reasoning abilities are often called into question. The stories my participants shared about asking for help, in particular, reveal much about how institutions such as EMU do or do not recognize requests for help as valid, depending on the reasoning behind such claims. Fortunately for them, all of the students I interviewed were adept at articulating the kind of accommodations they need— screen readers, extra time on tests, and so on. Philip, Devin, and Blake in particular talked 57 in some detail about their accommodations, explaining why, when, and under what circumstances they need them. Devin, for instance, recounted the following exchange with a professor:

Devin: Because in my class, my professor gives me the PowerPoints… the class has to fill in… the

PowerPoints… she gives me all… the details, everything in the PowerPoints.

Sean: Okay.

Devin: All the information in the PowerPoint, and that’s… good information, too. Because… I

met with her before work, and… I told her, I said ‘hey, I just need a PowerPoint’… instead of

writing, it’s hard for me to write and listen to the professor.

Sean: Oh, okay.

Devin: And that’s the same thing happening before in high school, I had a hard time writing and

listening to the teacher…

Devin’s response reveals he has thought through not only what sort of accommodation he needs, but why he needs it. Furthermore, he has thought through how to explain what he needs in a succinct manner his professor will likely understand (‘I have a hard time writing and listening to the teacher’). Later, he would refer to himself as a “hard learner,” a label that, while not particularly descriptive, functions as a kind of Toulminian warrant in his argument for access to the professor’s PowerPoints.

This rational model of asking for help, wherein the student contextualizes their request in terms of a self-identified personal characteristic, a strength or weakness, is characteristic of how the STEP program, and other self-advocacy training programs, teach learners with I/DD how to ask for access. Instructional materials are laden with 58 directives to students to get to know their strengths and weaknesses and practice explaining these to others. For example, in the introductory “Independent Living and

Personal Adjustment” course, STEP students watch a video created by the National

Collaborative on Workforce and Disability titled “411 Disability Disclosure,” which features testimony by a young man named “Luis” explaining how he requests accommodations from his employer. It is evident from watching the video that its editors skillfully reassembled Luis’s words to create the following streamlined statement:

Well when they ask me for the first to discuss it or whatever, I just tell them well,

I have a hard time like learning stuff and this is how I learn. I need them to write

down the instructions and give me an example, so I can know a better way of

helping them out and doing the job the best that I can at my abilities, you know?

So when it comes to that kind of stuff I’m very confident in that.

Luis’s testimony has three key parts: a euphemistic description of his learning differences, a description of the needed accommodation, and a justification for the accommodation that focuses on the employer’s needs. Devin follows this model, if loosely, in his own request for accommodations: he explains what he needs and why he needs it. (While he did not attempt to explain how the accommodation benefits the professor or the institution, such justifications are generally not called for in academic spaces.) Both of these examples model the logics whereby accommodation requests are rendered legible in bureaucratic spaces. To claim recognition for one’s access needs, one

59 must practice “right speech” (Brueggemann, 1999)—in this case, admitting a vulnerability, whether that be a “weakness,” “difference,” or diagnosis. Emotional outbursts and unwarranted demands are, by contrast, unacceptable ways of obtaining accommodation.

One problem with the self-advocacy model of access is that it requires students with disabilities to “out” themselves, engendering potential misrecognitions that clash with the students’ desires to present themselves in a certain way. A few of the students reported incidents prior to college in which publicly admitting a struggle or limitation exposed them to teasing, discrimination, and bullying. These experiences were not necessarily limited to primary/secondary school, either. One student reported that when a professor at EMU found out he was in STEP, they stopped including him on some group emails and took longer to grade his assignments than the other students’, making him feel excluded.

The students I spoke to had different strategies for dealing with such dilemmas.

Blake’s solution was to develop good study habits prior to college in order to minimize having to ask for help. For Philip, a confident, game attitude toward self-advocacy serves to offset the vulnerability he feels when requesting help. He explains that before arriving at EMU,

I always had to advocate for myself and I always struggled with that… cause, you know, when

I’m doin my work and… talkin with other people, and… one of my teachers says ‘Philip you doin

okay?’ ‘Yeah I’m doin great!’ when I’m actually struggling… You know and I… when I get the

grades back, I’m like ‘ah, dang, I shoulda asked for more help.’ Y’know, so that’s… um, 60

advocating is definitely improved since I learned about it and since, where I’m heading now… not

to be embarrassed about askin for help and not to be embarrassed about… y’know, advocating for

yourself… And so I’ve definitely felt a lot more comfortable with sharing… what I’m feeling and

what I need help with.

When I questioned Philip if asking for help has ever had negative social consequences, he replied “only getting laughed at in class,” elaborating: “say I ask a question and people laugh at me, cause it’s like a funny question, but it’s like actually a serious question, and then I feel ashamed… other than that, like, advocating is like, the definite, the best life skill, like, I’ve learned.” At EMU, Philip says that he doesn’t have the same fear of teasing he had in high school. He reported feeling nervous the first time he asked for help in his speech class, a ‘mainstream’ gen ed class, but ever since, he says he’s felt confident. As he puts it, going through the potential embarrassment of getting made fun of is “worth… every moment.”

Philip’s courageous attitude secures recognition of his needs, at the risk of potentially losing face with teachers and/or classmates. This tradeoff can put students with disabilities in a position of unavoidable shame, forcing them to choose between public humiliation or private shame over not having the courage to ask for help. In academic spaces, dueling pressures to conform to social expectations (including expectations of normalcy) and to succeed academically can cause students not to speak up at all. Part of the function of Disability Services offices is to establish secure communication channels among students, disability support staff, and instructors, so that such dilemmas can be avoided and students can feel empowered to ask for help. But these

61 arrangements require preparation. As Philip’s story demonstrates, access issues can arise suddenly and unexpectedly—for instance, in the midst of class, where students might run into trouble with a lesson, activity, or assignment and need immediate intervention.

Where disclosure of one’s diagnosis is concerned, ‘coming out’13 can be particularly difficult, despite attempts by disability service providers to make disclosure less intimidating. The ADA legally prohibits instructors from asking students questions about a diagnosis of disability or any other private medical information. Students must, however, provide proof of diagnosis to the university in order to obtain certain accommodations. To facilitate this process, the “411 Disability Disclosure” video referenced earlier attempts to introduce students to the concept of disclosure as a personal choice. In the first few seconds, an off-screen voice states that disclosure is a “very personal decision” that means “making an informed decision when or if to tell someone about your disability.” The video then cuts to interviews with disabled students who talk about their carefully considered decisions to disclose in order to obtain accommodations through their campuses’ Disability Services office. The off-screen voice returns, this time asserting (somewhat misleadingly) that “employers can’t discriminate against people with disabilities if they’re qualified.” The video then cuts to an interviewee, who explains how disclosing their disability to “people for the first time” feels good because they “are proud of who I am, and I don’t care what people think.” The next interviewee

13 For a nuanced discussion of the affordances and limitations of the “coming out” metaphor for describing the experience of disability disclosure, see Samuels (2003).

62 acknowledges that people will have differing comfort levels with disclosure, but that the people “worth having in your corner,” are “gonna understand.”

In presenting disclosure as a personal choice, and in addressing itself to a general audience of individuals with I/DD, this video implies that students will I/DD will have a high level of control over the disclosure process. Despite the video’s air of neutrality, it subtly celebrates outcomes in which its interviewees decide to disclose, presenting disclosure as a risky, yet honorable, choice; and it downplays some of the potential negative consequences of disclosure in the workplace. This notion of disclosure as something falling within the student’s control undersells the degree to which intellectual/learning/developmental disabilities are not “invisible” but “apparitional”

(Price, 2011; p. 18). By using the term “apparitional,” I understand Price to mean that mental disabilities are sometimes perceptible, sometimes not. Of the students I interviewed, those who could more or less ‘pass’ as nondisabled did apparently feel some degree of control over the disclosure process. Blake voluntarily disclosed to me his diagnoses of Asperger’s, ADHD, and bipolar, and talked about his preference to not disclose his disability in certain contexts, particularly social situations involving primarily nondisabled-presenting students. Philip also talked to me about his diagnoses and his preference for passing. In the following section, I explore disclosure’s rhetorical dimensions in greater depth.

In addition to knowing and disclosing one’s strengths and weaknesses, academic self-advocacy typically requires strong problem-solving skills. In his interview, Devin demonstrated a knack for coming up with solutions to problems by drawing connections

63 between past and present experiences. Unsatisfied with the performance of his education coach—a student helper assigned to help him in his general education classes—Devin requested a meeting with the STEP program coordinator to talk about how the program could better support him. After expressing his opinion that his ed coach wasn’t doing enough to help him with his schoolwork, he said he wished the program would give him an ed coach who was also a tutor, rather than keeping the duties of the ed coaches and tutors separate. He related that at his high school, there was more sharing of responsibility between ed coaches and tutors. Drawing such comparisons between past and present helps Devin better understand his current situation and come up with solutions to current problems. Devin’s critical thinking reveals the reasoning of an effective self-advocate adept at navigating bureaucratic educational systems, mostly on his own. Though his mother advises him in advocating for his needs, and though the

STEP staff are reportedly supportive and flexible in accommodating him, Devin demonstrates facility in thinking through, articulating, and acting upon his access needs independently.

The stories my participants told about ‘taking a stand’ likewise entailed a conception of self-advocacy as rational and independent. This was somewhat surprising, as the phrase ‘taking a stand’ is so often used to connote confrontation, even aggression.

While confrontation was certainly present in these stories, in nearly every instance, the students talked about backing up their complaints with reasons. ‘Taking a stand’ thus figured as a kind of problematizing rhetoric in which participants point out and explain problems with existing systems, practices, and/or people’s behavior. One participant,

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Blake, explicitly identified self-advocacy with taking a stand, defining it as “standing up for myself in any situation whatsoever.” He shared that before moving to EMU, he worked at a restaurant where he was treated poorly by some of his co-workers. When he confronted one co-worker for slacking off and for picking on him, the general manager came down on Blake (“the managers wouldn’t get on him at all… they would get on me and this other guy for tryin to… get him to work harder”). Eventually, the problematic co-worker was fired. I asked Blake where he learned how to handle himself in this situation. He replied that he had to learn how to stand up for himself in elementary and middle school. He was beaten up a lot, and the teachers allegedly did little to defend him.

At one school he attended, where staff were permitted to restrain students, Blake said that a teacher put him in a hold for “mumbling a curse word” at him. As he tells it, dealing with such violent actors forced Blake to learn reason-based self-advocacy as a means of self-defense.

Regulating Embodied Signs of Disability

Self-advocacy’s focus on rationality, particularly in the context of academia, can lead to a preoccupation with “right speech”—as Brenda Brueggemann (1999) puts it, “the good disabled person speaking well”—that overshadows the construct’s embodied dimensions. In particular, one’s right to be and remain on campus is very often predicated on good behavior. Professional self-advocate Christine Brown informed me that in the trainings she leads, the word “behavior” is used to signify negative actions such as lying or saying something rude. Behaviors are things people with I/DD are frequently taught to get ‘under control.’ Educational psychologists often discuss behavior in terms of “self- 65 regulation,” defined by Whitman (1990) (qtd. in Wehmeyer, 1995) as “a complex response system that enables individuals to examine their environments to make decisions about how to act, to act, to evaluate the desirability of the outcomes of the action, and to revise their plans as necessary” (p. 373; see also Wehmeyer, 1995, p. 19).

Blake used the term “cognitively aware” to describe the difference between students who behave properly in public and students who act up. Good behavior, as a self-regulated embodied performance of social competence, is thus recognized within the I/DD community as a self-advocacy practice, even when it does not involve verbal communication.

The students’ efforts to control behaviors associated with their disabilities attest to the inherent rhetoricality of disability. From a rhetorical standpoint, disability is a public presentation, voluntary or not, of meaningful embodied difference. This is not to deny that disabilities encompass internal biological mechanisms, but rather an affirmation of what disabled people and disability studies scholars have long recognized: that disabilities are socially as well as biologically constructed. By virtue of their embodiment, some students are able to perform a kind of neurotypicality. Take, for instance, Philip and Blake, who talked about selectively disclosing their disabilities based on the situation (or, as Philip put it, “blending”14). In effect, Blake and Philip are able to confine disclosure to the realm of discourse (and, by extension, ‘control’ disability as an

14 In a study of how disabled students negotiate college English curricula, Price (2017) found a similar emphasis on being “singled out/blending in” in one student’s account. “Bella’s daily life requires that she constantly negotiate the choice between standing out and blending in, and the costs of making the wrong choice in any given situation may be very high” (p. 146). 66 object of discourse). For students who cannot pass so easily, other rhetorical strategies become salient. If one’s speaking has the potential to ‘out’ them, not speaking up can be one such strategy. And yet, not speaking up is generally viewed as something of a negative in the self-advocacy community.

This was especially evident in the case of John, who has a speech-related disability that causes him to talk very rapidly, making him difficult to understand for people unaccustomed to his speaking style. John’s speech automatically ‘outs’ him as someone with a disability. His self-advocacy strategies thus look very different compared to Blake’s and Philip’s. From a rhetorical perspective, John’s silences might be viewed as strategic. When I asked John if he could think of a time he had to self-advocate prior to college, he recalled a day in Spanish class when he stood up and told the class his

Spanish name, presumably at the teacher’s request. Given his usually taciturn demeanor, to speak in class when called upon, to participate, is for John a rhetorically impactful act of claiming his allotted space and thus, I would argue, a kind of self-advocacy. (The mere act of speaking is indeed recognized as a form of self-advocacy in the I/DD community: at meetings of the Ohio Self-Determination Association, professional self-advocate

Christine Brown (whose interview is the subject of Ch. 4) enjoins self-advocates to share a time they recently “spoke up.” Self-advocates may share something out-of-the ordinary, such as confronting a caregiver about interrupting them, or something mundane, such as asking to get their hair done. Any form of response to the question is applauded, even if the person doesn’t answer the question per se.) John’s speech act is laden with risk: it marks him as disabled in a space where disability is not typically included. (This is

67 assuming his Spanish class was a mainstream classroom occupied by both disabled and nondisabled students.) At predominantly able-bodied institutions such as East Midwest

U, where STEP students take classes with the general student population, John’s speech constitutes a form of disclosure in and of itself, a revealing of disability where disability is not expected, with powerful consequences for the classroom environment. Other instructors at EMU reported to me that the presence of STEP students in their classes changed the classroom’s dynamics for the better, making the other students more attentive to one another’s access needs. While such outcomes require careful cultivation

(accessibility statements on syllabi, open dialogue about ableism, disability, and embodiment), these anecdotes suggest that some disabled students’ speech acts constitute powerful performances of presence that can play a role in making classrooms more accessible, even when those speech acts have little to do with self-advocacy as it is traditionally understood.

Whereas some students minimize the presence of their disability via silence, this strategy is not always available, particularly to students of color whose behavior may be disproportionately policed in certain spaces. Devin, who is Black, shared a story about a time he was approached by campus security at the campus Union and accused of being disruptive. Since my focus was on Devin’s understanding of his own experience, I did not attempt to confirm the veracity of Devin’s claims via police reports. Thus, his story should be read as his impressions of the event described, not a purely factual accounting.

Devin told me that he was sitting in the Union, waiting on some friends from the STEP program, when two campus security officers approached him:

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They asked me did I have any… loud noise… playin from my phone. I said ‘no,’ … and they said,

uh, ‘we, we just checkin. We just wanted to make sure you not… [disruptin] the community,

because everybody has they own thoughts, like… you see people like with they headphones in…

yelling [?], disturbin the community.’ I said ‘hey officer, um, security, I didn’t have my phone out,

I was just only textin my mom, and then, and that was it. I didn’t have no, I didn’t have the

volume up, and I was not being destructive [?].’

Devin then claims that the officers asked him to show them his ID:

[T]hey come up to me cause you supposed to have your [school] ID… everywhere you go… So

both of them asked me for my ID. I didn’t do anything wrong, I wasn’t disrupting [?] the peace…

I didn’t pull it out… and they went away… I didn’t take my ID out… because… anybody can go

in the Union, like students or… guests… I didn’t do anything wrong, I was just mindin my own

business, waitin for a friend…

Devin is well aware of his right to be in the Union free of harassment by security. Yet in his story, his right to be there is called into question on account of his supposedly disruptive behavior. This story reveals that Devin’s experience as a young Black man makes him feel insecure around campus security guards, whom he feels single him out on account of his race. On a majority white campus such as EMU (in Autumn 2017, Black students at EMU numbered a mere 5.3% of the student population), Devin’s skin tone, coupled with his at times hyperactive behavior, can mark him as a “stranger” (Ahmed,

2012), as someone who doesn’t belong. As Devin tells it, the officers’ misrecognition of

69 him as an intruder puts him in a position where he must use his verbal self-advocacy skills to avoid the potential danger of a conflict with campus police. Devin informed me that a previous run-in with the police in his hometown prepared him to navigate this situation. His highly performative, self-regulated, assertive response—polite, rational, but firm—secures his recognition as someone with a right to be in the Union, if not necessarily someone who ‘belongs there.’ Devin thus imagines good behavior as essential to his self-advocacy. Alternative forms of self-expression such as shouting and ‘bouncing off the walls’ can have different consequences for Black students like Devin than for white students like Blake, Charles, John, and Philip. Even when the consequences are no different in reality, Devin’s story of this encounter demonstrates how experiences of racial Otherness inflect students’ self-advocacy practices. Such stories attest to the problems of deracinated rubrics of self-advocacy, which promote the same methods to all participants regardless of race.

Stories like Devin’s are common in the self-advocacy world. They tell of the dangers people with I/DD, who are disproportionately victims of violence, face.

Confronted with existential threats, students must regulate their behaviors in order to perform the rational social competence expected of EMU students. As has been well- documented, male students of color with mental disabilities’ behavior—in particular, any sign of emotional ‘deregulation’—is disproportionately policed, racialized, and pathologized in American educational spaces (see Annamma, Connor, and Ferri, 2013).

Emotional outbursts aren’t ‘supposed’ to take place on college campuses at all; students, faculty, staff, and visitors are expected to treat one another with respect. Certain kinds of

70 problematizing rhetoric are expected/accepted on college campuses (e.g., rational dialogue/debate), while others—yelling, ‘making a scene’—generally are not. Devin is aware that his safety hinges on his ability to regulate his emotions during encounters with police—a skill many people with I/DD struggle with.

Using Assistive Technology to Communicate

As young men, Blake, Charles, Devin, John, and Philip face heightened cultural pressure to act independently, without help. Blake’s stories in particular highlighted his agency as a lone actor, focusing on his use of reason to navigate conflict and stick up for himself. These stories build Blake’s ethos through invoking a kind of rugged yet rational masculine individualism. By projecting himself as confident and competent, Blake gains recognition of his self-advocacy skills and, by extension, his right to respect as a member of the EMU community with something valuable to contribute.

In this final section of my analysis, I focus on independence as a fourth recognition logic that mediates access to self-advocacy at EMU. In particular, I discuss how individualist models of communication stifle and stigmatize students’ use of assistive communication devices. Academic environments reward independence in myriad ways, for students of all gender types: students are evaluated as individuals, generally expected to complete their work by themselves, and rewarded for the

‘originality’ of their thinking. The university culture’s premium on independence is rooted both in western individualism and in ableist logics of bodily autonomy that denigrate reliance on external aids for routine tasks such as speaking, thinking, and

71 writing. Such logics penalize not only unauthorized collaborative work among students, but use of unauthorized assistive technologies as ‘unfair.’

My interview with John highlighted how these recognition logics can function not only in classrooms, but in what Price (2011) terms kairotic spaces: “the less formal, often unnoticed, areas of academe where knowledge is produced and power is exchanged,” such as extracurricular interactions with instructors (p. 60). Since I had John in class, I was somewhat familiar with his communication style by the time I interviewed him. In class, he often communicated with the help of an education coach, a student volunteer assigned by the STEP program to accompany him. In general, though she was adept at interpreting John’s speech for others, John’s ed coach encouraged him to speak for himself, as per the STEP program’s guidance to education coaches on how to best support student self-advocacy.15

When he does communicate by himself, John makes use of a variety of adaptive communication techniques. In our interview, he maintained direct eye contact when talking to me, and gave very patient, direct responses to my frequent requests that he repeat himself. I noticed that if I merely asked him to repeat himself, he would do just that: repeat himself at more or less the exact same speed. If, on the other hand, I asked

“Can you say that again, slower?”, he would slow down his response. When John

15 Though well-intentioned, this guidance, in my observation, overlooked the extent to which John exercises agency through his relationships with his interpreters. With an effective interpreter, John is able to accomplish social purposes he alone might not be able to accomplish. These policies could probably do a better job supporting a rhetorically nimble “both/and” approach to self-advocacy—both interdependent and independent communication.

72 realized I was struggling to understand him, he would occasionally break his response into parts, like so:

Sean: What do you do at the [student rec center]?

John: Three things.

Sean: Uh huh?

John: Counts…

Sean: Towels?

John: Counts.

Sean: Okay.

John: Clean tables…

Sean: Clean tables…

John: And [indecipherable] the gyms.

Sean: What was the last one?

John: Dust, mop gyms.

John also occasionally used a tapping technique he learned in high school, where he would take a finger and tap along with his response, accentuating each syllable. This helped him moderate his rate of speech. The final technique John demonstrated was his use of a smartphone app called MPiStutter, which displays the user’s rate of speech using different colors, thusly cueing him to slow down when necessary. I’d seen John use the app once before our interview, while meeting with him during office hours. After our interview, I observed him using it again during a class presentation.

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During our interview, John made noticeably infrequent use of these techniques.

He did not use MPiStutter until I specifically asked him about it. It’s possible that the pressure to appear normal, to present as a ‘competent’ communicator, dissuaded him. As

Price (2011), Melanie Yergeau (2017), Tanya Titchkosky (2011), and other disability studies scholars have written, disabled individuals face immense pressure to minimize their presence, to cause as little disruption as possible in predominantly able-bodied spaces. I did not pressure John to use the app, in part because I assumed he would choose to communicate with me in his accustomed manner. But perhaps in doing so, I was merely trying to minimize the sense of disorientation I felt talking to someone with nontypical speech. De-naturalizing my assumptions about customary conversation reveals the recognition logics dictating the terms of our interaction. John’s speech impediment marks him as different, interfering with his ability to blend in and potentially stigmatizing him. He has a tool that can help, but neither of us suggests he use it. Perhaps it’s our internalized ableism, perhaps the tool is too unwieldy—likely, some combination of the two. Self-advocacy calls upon John to use his verbal skills to navigate this situation. It calls upon me to respectfully listen and cooperate (although it is worth pointing out that I have never received self-advocacy training because of my assumed ability to advocate for myself as a non-disabled person). The burden to make sure John’s needs are met is thus placed most heavily on John. Neither one of us directs attention to

John’s app, which has considerable potential agency in this situation. We are stuck in a normative, ableist, anthropocentric mode of communication, according to which meaning and meaning-making rests primarily on our verbal abilities.

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This interaction demonstrates how the policies governing technology use in academia intersect with communicative norms and myths of bodily autonomy to stigmatize assistive technologies like the MPiStutter app. My interview with John was a quintessential kairotic space; though I took measures to ensure he understood his participation was not a class requirement, as his professor, I occupied a position of power that no doubt influenced how he chose to communicate with me. His attempts to maintain eye contact and speak face-to-face, without the help of the app, are conspicuous in this context. Certainly, MPiStutter has its practical limitations—it makes eye contact nearly impossible and multitasking difficult. Nevertheless, its exclusion from normal or expected social interaction in both formal and informal academic spaces would appear to testify to more than its technical shortcomings, pointing to a larger, ableist culture of communication underwriting student smartphone use—and student communication generally—at EMU. As Jason Palmeri (2006) has argued, which technologies get labeled

“assistive” and which do not is ultimately a product of classroom policies, professional discourses such as technical communication, and larger cultural conceptions about who deserves accommodation and why.

Conclusion

Recognition logics that tie access to self-advocacy—that conceptualize one’s right to belong and participate as something that must be claimed, justified, explained—erect certain barriers to meaningful inclusion for many college students (and many would be college students) with I/DD. As Cynthia Lewiecki Wilson (2003) argues, the conception

75 of self-advocacy as learned, self-aware, rights-based verbal rhetoric sets a relatively high bar for students with disabilities that affect thinking and communication. Lewiecki-

Wilson and others have critiqued the self-advocacy model on the grounds that it (1) marginalizes nonverbal communication; (2) centers the individual, rather than communities, as the rhetorical source of access; and (3) views the practice of self- advocacy in terms of citizenship, thus centralizing rights as preconditions for just treatment. Received uncritically, celebratory rhetorics of self-advocacy can as a consequence silence and marginalize nonverbal, non-citizen, and other multiply marginalized bodyminds, while diverting attention from the fundamentally interdependent, social dynamics of access and inclusion.

At stake in these critiques is nothing less than who gets recognized as deserving access, where such recognition is granted, why, and under what conditions. My analysis of these student accounts generally confirms Lewiecki-Wilson’s critique of self- advocacy’s limitations vis-à-vis higher ed. In academia, where verbosity and deep, thoughtful conversation are valued and where professors frequently enjoin students to

‘say more,’ students who have difficulty speaking may struggle to achieve recognition of their thoughts and talents. This focus on ‘saying more’ precludes theorization of non- verbal rhetorical strategies such as silence and listening. Without such theories, students who appear to rely on technology16 more than others, who are passive, or who are

16 This observation applies as well to students who use technologies like laptops and smartphones in the classroom in ways that aren’t necessarily coded as assistive. The increasing availability of accessibility features on popular devices such as Macs and iPhones means some students may be less likely to seek these accommodations through Disability Services. See Palmeri (2006) for an extended discussion. 76 reluctant to speak are likely to find fewer opportunities to have their access needs recognized. And students who have trouble regulating their behavior or managing the signs of their disability, particularly students of color, are likely to have their basic communicative competence—their basic rhetoricity—called into question.

On the other hand, while the liberal model of self-advocacy may be an imperfect path to rhetoricity for many students with I/DD, the fact remains that the self-advocacy skills taught in programs like STEP are essential in many contexts both in and outside higher ed. Though I have been critical of western notions of recognition in this chapter, attempting to de-naturalized them and thus loosen their grip on self-advocacy education, this should not be taken to imply that individual needs and rights are unimportant.

Especially as a nondisabled person, I would be severely remiss in making such an insinuation. Rather, my point is that either/or approaches to university access that uncritically champion a single method elide the rhetorical complexities of recognition.

Both self-advocacy and Universal Design have their limitations. Some advocates of

Universal Design speak of it in a way that suggests perfect planning could somehow eliminate the need for self-advocacy altogether. In my opinion, such rhetoric is just as hazardous as libertarianism and other forms of hyper-individualism. Rather, as I explain further below, Universal Design can create a context wherein asking for help is less stigmatized—in other words, a better context for recognition.

Implications for Educational Praxis

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(1) These interviews in many ways confirm what self-advocates, their allies, and

researchers have generally suspected: that one-size-fits-all approaches to self-

advocacy training are likely to fall short of preparing students to navigate the

complex rhetorical environments of higher education. Students will employ

different strategies depending on the situation and, as always, individual factors

such as dis/ability, race, ethnicity, gender, and cultural background. The self-

advocacy community, by and large, already respects and recognizes such

differences. But specific strategies, such as silence, avoidance of eye contact, or

stimming (Yergeau, 2017), ought to be discussed as such: strategies, and not

necessarily ‘behaviors’ needing to be corrected. Such strategies are part of

students’ attempts to dictate the terms of their recognition and rhetoricity.

(2) Along these lines, it is important for institutions and institutional actors to have

due appreciation for the social and material risks of self-advocacy. Institutions can

pursue strategies such as UDL to make classrooms, teacher-student conferences,

and other environments safer spaces for self-advocacy, particularly for students

with I/DD. The STEP program’s core curriculum classes, for instance, are

designed to be friendly, relaxed environments where students feel more

comfortable asking for help. Course materials, from lectures to quizzes to notes,

are adapted to the students’ learning needs. At the beginning of class, instructors

pass around copies of ‘guided notes,’ summaries of the lesson with blanks for the

students to fill in as they listen. Students can receive additional help from peer

education coaches, who casually float around the class to answer questions,

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clarify concepts, or help students complete their work. Asking for help in such an

environment is encouraged and not stigmatized.

(3) Self-advocacy’s focus on the individual is limiting. Self-advocacy training tends

to focus on transforming individuals into effective communicators, rather than

transforming institutions into rhetorically accessible environments. A good

example of this is the STEP program’s policy urging education coaches and social

coaches to let students advocate for themselves. While well-intentioned, such

policies can put both coach and student in uncomfortable, even dangerous

situations. Better attunement is needed to collaborative communication as a

complex space, where some forms of collaboration may have important

affordances that need not be overlooked. Programs like STEP can also conduct

outreach to faculty and administrators to start conversations about access and the

complexities of self-advocacy, so that instructors can be better prepared to meet

students halfway.

(4) Official institutional discourse that invokes concepts such as self-advocacy and

recognition can promote more nuanced understandings of these terms. Nuanced

institutional language is important; Sara Ahmed (2012) notes how when diversity

becomes institutionalized, it has a tendency to “recede” (p. 21), to fade into the

background of everyday life even while the institution continues to allow certain

forms of oppression (p. 14). Nonspecific language that obfuscates who is

responsible for access can accelerate this receding. Accessibility policies deserve

79 particularly careful attention, as they dictate the terms whereby a person with disabilities may both be included and excluded.

The Autistic Self-Advocacy Network’s (ASAN) (2018) position statement on self-advocacy, though obviously not university discourse, is nevertheless notable for how it plays up self-advocacy’s social and political dimensions. They write that self-advocacy

“can refer to an individual’s efforts to take control over their own life, be it at home, at

school, at work or in relationships. It can also refer to the efforts of a community to take

control over the public policy, media, social, societal, cultural, and other broader

conversations and actions about that community, including activities such as lobbying

legislators, engaging in protests and interacting with the media. ASAN works to advance

both types of self-advocacy.” (par. 9)

Framed thusly, self-advocacy becomes about rhetorical relationships among individuals, institutions, and communicative structures; about claiming a collective identity and advancing the larger group’s interests while attending to one’s own needs. Such rhetorical (re)imaginings open the concept of self- advocacy up to forms of communitarian action.

In its position statement on “Respect and Self-determination,” ASAN articulates a similarly sophisticated understanding of recognition, claiming that

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“[i]n advocating recognition [emphasis added] of the civil rights and dignity of Autistics

and others with disabilities, we are not overlooking the existence of” the “real challenges

associated with autism and other neurological differences. […] Rather, we are seeking to

create a world in which all people can benefit from whatever supports, services,

therapies, educational tools, and assistive technologies may be necessary to empower

them to participate fully in society, with respect and self-determination as the guiding

principles.” (par. 8)

Recognition, in ASAN’s formulation, is not a rejection of the reality of impairment. It does not mean pretending biological and neurological differences among individuals do not exist. In stating this explicitly, the authors of ASAN’s position statement appear to acknowledge the dangers inherent in forms of political recognition that ignore difference. (By contrast, the Arc and AAIDD’s invocation of recognition does not include any such gesture to embodied difference, instead foregrounding speech as the primary modality whereby one’s rights are recognized.) Rhetorically yoking rights-based recognition to communicative differences can be a way of protecting, and fostering, diverse forms of expression.

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Chapter. 3 Scientific Self-Determination: Measuring Selves through Technoscientific Text Ecologies

Introduction

How does a person ‘become’ self-determined? How can one observe self- determination in someone else? These questions have become increasingly urgent in educational studies, as scholarly explorations of student resilience and grit have moved to the center of policy debates. Many researchers have called for a fundamental shift in the focus of education from subject-based competencies to “growth mindset,” the invisible qualities that enable a person to solve problems and overcome challenges in the name of achieving their goals (Hochanadel & Finamore, 2015; Duckworth, 2016). New assessment technologies, such as the University of Kansas Self-Determination Inventory

(SDI), are touted as tools lay educators can use to help their students develop these qualities. Many such assessments have their origins in special education, where they were developed to help students with I/DD, who are frequently thought to lack self- determination, become more independent. Like measures of intelligence, measures of

‘SD’ are therefore reflections of dominant attitudes about disability and its relation to cultural notions of selfhood.

Self-determination has been a major focus of North American inclusive education programs since the early 1990s. In the STEP program, student self-determination is

82 measured using an assessment called The Arc’s Self-Determination Scale, or SDS. The

SDS nominally affords educators a means of discerning, with some degree of scientific certainty, a student’s level of self-determination. But is self-determination really a context-independent trait? Can a psychological test help someone become more self- determined? What can the perspective of rhetorical theory contribute to our understanding of how instruments such as the SDS work to promote certain ‘agential’ attitudes and behaviors? In turn, what can these technologies teach rhetorical theorists, particularly those who study the rhetoric of science, about assessment as a site of persuasion?

Professionally constructed psychometric assessments are used to assist professionals in a variety of fields, from education to psychiatry to healthcare, in conducting rational, scientific evaluations of a student or client. Hirings, firings, school placements, diagnoses, and involuntary commitments are rendered on the basis of psychometric assessment methods, in places where the appropriate legal and cultural structures exist.17 Psychometric assessment has long been a fixture of special education classrooms in particular, where students are commonly tested for cognitive, emotional, behavioral, and adaptive concerns. Tests of cognition and adaptive functioning, which compare factors such as students’ problem-solving skills, memory, and information processing ability, play a key role in diagnosing intellectual and developmental

17 See Rust & Golombok (1999), Modern Psychometrics, for a critical discussion of the history and methods of psychometrics; Cripps (2017), Psychometric Testing, for contemporary methods and applications.

83 disabilities. Such tests are underwritten by normative theories of human development, whereby comparison between peers of the same age is an accepted method of assessing ability.18 The practice of assessment must also be understood as reflecting the underlying structure of the modern educational system, where strains on school resources supply justification for assessment as a method of sorting students into groups with similar educational needs (see Sarason & Doris, 1979).

The ubiquity of testing in contemporary schools makes savvy psychometric praxis an urgent need. By all accounts, students and instructors lack a practical critical discourse to evaluate the claims of tests that, more often than not, seep unnoticed into their daily routines. One student I interviewed, Philip, seemed puzzled that I would even ask about the SDS (or any test, for that matter). After about a minute of tolerating my questions about it—Was it helpful? How?—he replied, with some finality, “It was learning.”

Psychological tests indeed purport to be learning; to teach us about ourselves. And in many respects, they can offer useful knowledge. But like all forms of scientific discourse, their politically neutral appearance can conceal the sociocultural constructedness of the knowledge they have to give. It is psychological assessments’ more or less invisible mediational activity, their transference of scientific rationality from the test to a third party intermediary, that I am particularly interested in analyzing as a textual (rather than purely intellectual) operation.

Rather than focus on how individual texts mediate scientific judgments, I argue that a focus on the ecological relationships among such texts provides a fuller picture of

18 For a disability studies critique of the notion of cognitive age, see Gill (2015), Already Doing It. 84 the institutional and disciplinary contexts wherein lay scientific judgments are enacted.

The texts and technologies (psychological experiments, statistical analyses, test protocols, assessment guidelines, etc.) that designers of psychometric instruments use to carry out the work of operationalizing psychological constructs are networked, or ecologized, in ways that subtly shape how those constructs are received, understood, and enacted. These technoscientific text ecologies, in other words, bear on users’ abilities to enact scientific judgments (praxis). In highlighting how shifting relationships between and among texts can influence scientific judgment, the text ecology concept offers a way of understanding the relationship between genre interaction and technoscientific praxis that gets us beyond anthropocentric notions of the rational, autonomous user.

Such understanding, I believe, can inform technical communication (and technical reading) practices that locate authority in linkages, connections, and conversations among texts, not single documents or monological perspectives. This fracturing of authority is especially urgent in domains such as inclusive education, where technoscientific meaning-making practices have historically dominated the way disabled bodyminds are understood. Indeed, self-determination seems a particularly odd subject to submit to psychometric authority, if we take humanistic (and post-humanistic) conceptions of the self seriously. Yet, by collecting reliable quantitative data on self-determination and displaying that data in a more or less accessible format (that of a test), psychometric assessments can be incredibly effective heuristics for modeling useful behaviors. Thus, while I do not argue for a rejection of psychometric assessment of self-determination, I do advocate for a more pluralistic approach to psychological knowing-making, one that

85 more equally balances ‘expert’ opinions with students’ own self-perceptions.

Contextualizing expert authority using ecological models is one way of moving toward this balance.

To map the SDS’s ecological terrain and project its impact on the processes whereby students ‘become’ self-determined, I first describe the history of the SDS and its use in the STEP program as a metric of student progress. I then outline my theoretical framework, which relationizes notions of technoscience (Condit, 1996; Barad, 2003 &

2007; Asberg & Lykke, 2010), text ecologies, and praxis to articulate how textual relations mediate scientific judgments. Then, I zoom in on two ‘nodes’ in the SDS ecology—citations and validity/reliability claims—and chart how each influences the translation of Self-Determination Theory (SDT) into practice. I find that citations construct rhetorical relationships among scholarly texts, affording and constraining localized understanding of what self-determination is, while hedging in test manuals construct administrators—usually, teachers—as strategic doubters, limiting opportunities for deliberation among administrator, student, and the assessment itself. In sum, these findings suggest the affordances of a praxis-oriented approach to scientific communication.

Description of the Arc’s Self-Determination Scale

The Arc’s Self-Determination Scale (SDS) (Wehmeyer, 1995) was among the first psychometrically valid measures of self-determination to become available on the

North American assessment market. Its developers envisioned it as a tool to help students

86 with I/DD break away from the paternalistic control of caregivers and institutions.

Hitherto, self-determination had been a topic of study and debate among experimental psychologists, with little application in more practical areas. This changed in 1992, when educational psychologist Michael Wehmeyer outlined an operational framework of self- determined behavior in an article for the journal Education and Training in Mental

Retardation19 titled “Self-Determination and the Education of Students with Mental

Retardation.” Defining self-determination as “the attitudes and abilities required to act as the primary causal agent in one’s life and to make choices regarding one’s actions free from undue external influence or interference” (1992, p. 305), Wehmeyer’s article imagined what self-determination might look like for intellectually/learning disabled students, previewing many of the constructs Wehmeyer and his team would build upon in designing their assessment. The Arc’s Self-Determination Scale, sponsored by the U.S.

Department of Education Office of Special Education and Rehabilitative Services, was released three years later in 1995 as part of a 151-page document including a lengthy rationale for the scale, description of its construction, and scoring and administration guidelines. Several new measures of self-determination intended for both disabled and

19 In the self-advocacy community, use of “the R-word” is considered a form of epistemic violence. As such, in this instance and throughout the chapter, I only use it in quotations or when it appears in the title of historical documents.

87 nondisabled students, such as the Self-Determination Inventory (SDI),20 have since been developed based on Wehmeyer’s original work.

The SDS remains a popular tool in inclusive education programs such as STEP, despite changing very little since its mid-1990s debut. Two later versions of the SDS, the

Post-Secondary Arc’s Self-Determination Scale (Wehmeyer, Palmer, Shogren, & Seong,

2014a) and the Short-Form Arc’s Self-Determination Scale (Wehmeyer, Palmer,

Shogren, & Seong, 2014b), contain but minor changes to the original protocol. In the

STEP program, students take the postsecondary version their first semester. Various other tests are administered throughout their time in the program, including assessments of reading proficiency, motor and process skills, occupational performance, quality of life, self-efficacy, life skills, locus of control, campus and community engagement, overall satisfaction, overall health and wellness, support requirements, and vocational fit with select occupations. In addition to the SDS, students take one other self-determination assessment, the AIR Self-Determination Scale.

The original SDS (the “Adolescent Version”) presents the test-taker with a list of

72 items broken up into four subdomains: Autonomy, Self-Regulation, Psychological

Empowerment, and Self-Realization. Test items ask students about their habits; attitudes toward school, work, and social activities; and perceptions of their ability to function independently. They include a variety of formats: five-point Likert scale responses, agree/disagree responses, story-based items, shorter fill-in-the-blank questions, and

20 See Shogren, Wehmeyer, Little, Forber-Pratt, Palmer, & Seo (2017), “Preliminary Validity and

Reliability of Scores on the Self-Determination Inventory: Student Report Version.”

88 binary choice questions. Curiously, each subdomain features but one item type, with the exception of Self-Regulation, which features two and is the only subdomain to utilize discursive responses. The Autonomy section uses a five-point Likert scale ranging from

“never” to “whenever I get the chance” to assess how frequently students perform daily tasks on their own, such as picking out their own clothes. Self-Regulation tests students’ problem-solving abilities by presenting them with a series of items in which students must complete a story with a beginning and end but no middle. For example, one item begins with the scenario “Your friends are acting like they are mad at you. You are upset about this.” Students must write in an answer that gets them to the ending, which reads

“The story ends with you and your friends getting along just fine.” Per the SDS scoring guidelines, an acceptable response might read “I’d talk to them and see if there was a problem and then talk to them about it and see if we resolve whatever it is that happened”; or, “Me and my friends went to the counselor” (Wehmeyer, 1995, p. 83). In the Psychological Empowerment section, students express their level of empowerment by choosing one of two answers to questions such as “I have the ability to do the job I want… or I cannot do what it takes to do the job I want.” Finally, in the Self-Realization section, students answer a series of agree/disagree items designed to measure their understanding of their emotions, limitations, and the degree to which these motivate them, such as “I am afraid of doing things wrong” and “I don’t accept my own limitations.” Figure 1 provides a list of sample questions from the SDS Adolescent

Version.

89

Figure 1 Sample test questions from the Arc’s Self-Determination Scale (Adolescent Version)

• Do you take care of your own clothes every time you have the chance?

• Do you keep your appointments?

• Do you regularly write letters or talk on the phone to friends and family?

• How often do you listen to music that you like?

• Can you get what you want by working hard, or do you need good luck to get

what you want?

• Is trying hard at school (or at work) futile, or will it get you a good job (or a good

promotion)?

• Do you or don’t you know how to make new friends?

• Will you be able to make choices that are important to you, or will your choices

not be honored?

• Do you feel ashamed of your emotions?

• Do you feel free to be angry at the people you care about?

• Is it better to be yourself or to be popular?

• Do you feel that you are loved because you give love to others?

• Do you know how to make up for your limitations?

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While the SDS was designed specifically to accommodate test-takers with a range of intellectual/cognitive abilities, students are generally encouraged to complete the scale in thirty minutes to an hour. Additional sessions may be scheduled if the student cannot finish within the allotted time. The test guidelines stipulate that students should complete the scale on their own, and that administrators, while obligated to assist students who ask for help, should avoid giving leading answers to questions. Such guidance is standard in self-report questionnaires, where the objective is to access the test-taker’s thoughts free of outside interference. The guidelines further instruct administrators to ensure the testing environment remains free of distractions and that students’ desks are clear.

After students complete the scale, administrators help them calculate their results using a scoring sheet found on the back of the protocol. Responses are assigned point values according to Wehmeyer’s normative theory of self-determined behavior. Students receive higher scores for responses that align with the scale developers’ conception of what constitutes self-determined behavior, lower scores for responses suggesting a tendency toward passivity, dependency, or disempowerment. Using conversion tables found in the procedural guidelines, the administrator then converts the student’s raw score into percentile scores for comparison with the sample group. Per the guidelines, if a student seems uncomfortable with these comparisons, the administrator can opt not to share their percentile scores with them. The session ends with a discussion between administrator and student of areas in which the student can improve. After the session, the administrator logs the percentile scores into the student’s Comprehensive Student

Transition Assessment Report (STAR), a document used to (a) provide a baseline of data

91 on the student’s knowledge and skills at the beginning of their time in the STEP program,

(b) recommend supports (such as assistive technology and personal care attendants), and

(c) identify an initial program of study and employment/internship opportunities for the student moving forward. The SDS is thusly used to furnish evidence of a student’s personal growth and, by extension, the efficacy of STEP’s interventions.

Theoretical Framework

Psychometric Assessment as Technoscientific Practice

By referring to psychometric assessments such as the SDS as technoscientific texts, I mark them as sites where “the positivist distinction between scientific theories and their technological/practical applications” breaks down (Asberg & Lykke, 2010, p. 299).

Psychometric assessments are, in other words, spaces where theory blurs explicitly into practice.21 Via popular publications such as Psychology Today, the results of psychological studies are publicly circulated in ways that give their theoretical claims the ring of unvarnished truth, even as professional psychologists encourage duly cautious interpretations of their work. This can reinforce the perception that psychological truths exist independently of the disciplinary practices and “material methods” (Teston, 2017) that produce them. Psychometric assessment is but one such material method. Since its

21 While experimental psychologists might chuckle at the suggestion that their discipline, which is centrally concerned with the study of human behavior, has anything to do with ‘pure’ or ‘basic’ science, the point is not how readily one’s object of analysis lends itself to scientific investigation, but how the techniques employed to investigate that object trade in scientific methods and meaning-making practices to support a rhetor’s claims. 92

Victorian-era inception, psychometric assessment has fascinated members of industrialized societies. In recent years, pop psychological assessments ranging from various adaptations of the Myers-Brigg Personality Type Indicator to “Which Harry

Potter Character Are You?” Buzzfeed quizzes have grown ever more popular. Such pop assessments attest to the powerful allure of the idea that something as simple as a multiple-choice questionnaire can unlock the mysteries of our inner selves.

Analyzing technoscientific texts through a feminist materialist lens can reveal how scientific theories are in fact enmeshed in the social processes and power relations that co-produce phenomena such as gender and disability. Rhetoric of science scholar

Celeste Condit’s (1996) analysis of the implicitly sexist assumptions underlying contemporary brain sex research is an example of this line of critique. Condit’s study led her to conclude that the “insulation of the ‘scientific sphere’” from social critique “closes off consideration of alternative hypotheses and methodological possibilities” in neuroscientific research (p. 84). Similarly, feminist STS philosopher Karen Barad (2003,

2007) has discussed at length how theoretical debates in quantum physics are shaped by, and shape, atomistic ontologies that in turn bear upon western politics and ethics. These studies demonstrate the utility of a critical, feminist, technoscientific perspective for troubling the supposed divide between scientific ‘Truth’ and processes of rhetorical circulation. Scientific claims (and for that matter, science) are not hermetically sealed from public input; rather, members of the public, including users of assessments such as students and teachers, are active participants in the ongoing production of scientific

93 meanings. A central issue in feminist technoscience, then, is that of scientific authority and its circulation through everyday textual objects.

Disability studies has critiqued psychometric methods of knowing-making in particular, pointing out the problematic assumptions upon which psychometric theory is based. Psychometrics has a troubled past vis-à-vis disability, intellectual disability especially. Sir Francis Galton, widely considered the founder of modern psychometrics, was famously a eugenicist who advocated for sterilization of individuals with low intelligence. Galton was among the first to carry out large-scale correlational studies of psychological traits and to propose the use of the normal curve as a model for test-score distribution (Rust & Golombok, 1999, pp. 5-6). Subsequent correlational techniques such as multi-factor analysis, perfected not long after, form the bedrock of modern psychometric test design. While Galton’s views on disability and the measurement techniques he helped popularize should not be conflated, disability studies scholars have pointed out some troubling overlaps. Around the time of the SDS’s publication, DS scholar Lennard Davis (1995) published an influential critique of psychometrics that would come to shape thinking in the field of disability studies for many years.22 Davis argued that Galton’s postulation of error theory as a rational basis for population control depended on certain arbitrary epistemological (and moral) assumptions: namely, that normality is desirable (or at least unobjectionable), while certain forms of abnormality are not. This mindset, Davis implied, is embodied in the normal curve: regardless of the

22 A version of Davis’s essay would eventually be included as the introductory chapter in The Disability

Studies Reader, a popular text in both graduate and upper-division undergraduate disability studies courses.

94 testers’ intentions, one cannot apply psychometric methods without implying a normative hierarchy of responses and, by extension, ways of thinking/feeling/being.

Disability studies critiques of psychometrics point to some of the underlying epistemological biases of assessments that rely on such methods; in particular the notions that (a) psychological traits can be straightforwardly objectified and ranked and that (b), when applied to the population as a whole, these rankings will eventually map onto a normal curve. Psychometric methods thusly transform observational data about a trait such as intelligence or self-determination—often experimental data, though not always— into a numerical test score packed with incredible suasive power. As explained below, the intellectual operations whereby these ontological transformations take place are carried out via textual operations distributed across multiple documents: in particular, citation and hedging.

The issue of how assessment technologies distribute epistemic authority and agency is especially urgent for people with mental disabilities, including but not limited to I/DD. Any act of psychometric assessment carries the risk that results will be interpreted too literally, without being placed in their proper context. This risk derives from psychometric assessments’ generic features. To lay readers of the SDS Procedural

Guidelines, both the authors’ use of a scientific register (Halliday, 2004) and the presence of conversion tables appear to testify to the assessment’s scientific and statistical bona fides. The reader’s apprehension of these features illuminates social positions and actions they may take based on their reading of the text. In essence, the rhetoric of the guidelines empowers administrators to render scientifically authoritative judgments about a

95 student’s level of self-determination. This results in a curious philosophical dilemma: despite the test’s supposed reliance on self-report methods, it creates a rhetorical context wherein administrators can claim to be able to observe a student’s level of self- determination independently of that student’s words. By prodding students to acquiesce to one among a limited set of discursive choices, the test doesn’t provide a portrait of individual self-determination so much as match that individual to an archetype. The numerical ranking of response types corresponds to a normative ranking of these archetypes. So, for example, Student A, who fits Archetype 1—plans their own weekend activities whenever they are able, has thought through their future employment plans, but is easily discouraged—is more self-determined than Student B, who fits Archetype 2— rarely corresponds with friends and family, has not thought through their future employment plans, but is very persistent. Apprehended as objective, these archetypes, though but models of reality, are accorded a higher level of realness than the student’s own accounts of their self-determination. If, say, Student B objects to their inferior ranking, even going so far as to provide alternative evidence of self-determination not accounted for in the assessment, the administrator is empowered to disregard their objection. In sum, the generic properties of psychometric assessment create an overall impression of self-determination as a normative, objective, quantifiable entity belonging to a higher “objective” reality.

Technoscientific Text Ecologies – Contexts of Praxis

In effect, psychometric assessments such as the SDS purport to teach test-takers about themselves. The degree to which test-takers are able to critically evaluate such 96

‘self-knowledge’ depends on their own critical capacities, those of the administrator, and the quality of the test’s guidelines, among other factors. Many test-takers diagnosed with

I/DD struggle with abstractions, and therefore might rely a good deal on their instructors, counselors, or whomever else is administering the test to help them interpret their results.

The SDS was specifically designed to be administered by such lay persons, who usually are not experts in psychology. The SDS Procedural Guidelines thus play a key role in helping administrators understand how to interpret a student’s test score.

I argue that these interpretive dilemmas can be productively understood as the

‘rubber’ of praxis—defined as self-aware, reflexive action aimed at human flourishing and/or social transformation—meeting the ‘road’ of genre. Rhetorical theorists beginning with Aristotle have traditionally understood praxis as a practical and locally contingent, as opposed to theoretical, species of knowledge (see Moss, National Endowment for the

Humanities, & Catholic University of America, 1986; Schoeck, 1986). Carr and Kemis

(1986) characterize praxis as the “mak[ing] [of] a wise and prudent practical judgment about how to act in this situation” (p. 190). According to this tradition, praxis involves translating theoretical knowledge into moral, prudent action, with human flourishing as its telos, or ultimate goal. In writing studies and technical communication, recent uptakes of praxis tend to be of the critical Marxist/Freirean variety, wherein praxis is understood as an iterative process of action and reflection aimed at social justice. Technical communication scholar Natasha Jones (2016), for instance, has characterized praxis as

“an essential, not-to-be-separated pairing of reflection and action” (2016, p. 224; see also

Jones, Moore, & Walton, 2016).

97

A key element of praxis-based scientific communication is context. While scholars of writing, rhetoric, and technical communication have invoked praxis to conceptualize intertwined, locally-contingent processes of theory, reflection, reasoning, action, and social change, such discussions have paid relatively little attention to praxis’s delimitation within certain contexts: in particular, systems of text, discourse, and institutional power. Networks or ecologies of texts, specifically genres, alternatively constrain and enable actors’ abilities to reach moral, theoretically-informed judgments— e.g., judgments about a student’s level of self-determination. In this regard, psychometric assessment offers an illustrative case study. Psychometric assessments can be supplements to praxis insofar as they are designed, first and foremost, to guide actions; specifically, to augment moral reasoning with scientific rationality. Yet, as discussed above, their generic properties favor some forms of reasoning over others, placing constraints on the user’s ability to enact the kinds of reflexive, critical judgments praxis requires. Inattention to contextual factors such as genre, in short, prevents us from theorizing praxis as anything but a human mental operation.

My analysis of the SDS suggests that what is needed is a way of attending specifically to the networks of texts, technologies, genres, practices, and actors that shape praxis (reflective action) in a particular environment. I have advocated for a rhetorical genre-based focus in particular, because it allows one to zoom in on the lexical, grammatical, stylistic, rhetorical, and material characteristics that imbue texts with particular social purposes (cf C. Miller, 2009; Bawarshi, 2003; Bawarshi & Reiff, 2010).

Writing studies scholars using genre theory have applied this approach to productively

98 examine relationships between technoscientific documents used in clinical settings and clinical practice (cf McCarthy, 1991; Antaki & Rapley, 1996; Berkenkotter & Ravotas,

1997; Berkenkotter, 2001). For instance, in observations of several psychotherapists’ notetaking, Berkenkotter and Ravotas found that therapists tended to translate clients’ subjective descriptions of their experience into DSM categories, thus limiting possibilities for care. An ecological understanding of the relationships among the DSM, the client’s descriptions of their symptoms, and the psychotherapist’s notes reveals how everyday textual practices circulate officialized, power-laden ways of perceiving. At the same time, this ecological perspective can illuminate how innovations introduced by text

‘users’—what Spinuzzi (2003) refers to as micro- and meso-level practices—create and promulgate unique, non-hegemonic ways of perceiving. Such practices might include the therapist who uses narrative techniques with their clients, thereby generating data that challenges or complicates dominant DSM meta-narratives; or the inclusive education instructor who gives their student a chance to ‘talk back’ to the SDS, thus leading to an arguably more nuanced judgment of the student’s ‘level’ of self-determination.

Methods

As a grounded textual analysis, this study looks primarily at the composition of texts and intertextual relationships. In the initial phase of my analysis, I examined the

SDS test protocol and three versions of the SDS Procedural Guidelines: the Adolescent version, Short-form version, and Postsecondary version. Here on out, I refer to these as

SDS-A, SDS-SF, and SDS-PS, respectively. Later, I extended my analysis to the

99 scholarly literature surrounding the SDS’s production, focusing on two publications in particular: Wehmeyer’s “Self-Determination and the Education of Students with Mental

Retardation,” published in the 1992; and The Arc’s Self-Determination Scale, published in 1995.

I employed a grounded theory approach revolving around comparative analysis of data, codes, and categories (S. I. Miller & Fredericks, 1999; Gasson, 2003; Charmaz,

2008). I followed standard grounded theory procedures, including simultaneous data collection and data coding and systematic memoing. During my initial analysis, I coded line by line, mainly using gerunds and participles to describe “implicit processes” in the text (Charmaz, 2008, p. 164; see Appendix C for a complete list of my initial codes). At the conclusion of this open coding phase, I had narrowed my units of analysis to pragmatic moves: statements/series of statements with uniform purposes, whose aim is to move the reader to take up particular actions. In focusing on pragmatic moves, I aimed to outline the ways in which the guidelines (a) situate administrators in relation to the larger context of assessment, and (b) engage them in performing particular actions, especially vis-à-vis the test-taker.

After open coding, I proceeded to the axial coding stage, characterized by Gasson

(2003) as “the search for relationships between coded elements of data” (p. 83). I grouped codes and data into categories along pragmatic continua to explore their implicit relationships. This led to the refinement of my codes into broader analytic categories.

Once I had settled on a set of analytic categories, I used the qualitative research software

NVivo to selectively re-code the documents. At the culmination of this process, I

100 identified four pragmatic move categories that seemed to characterize the majority of units in my data set: constructing the test’s credibility, defining test administrator qualifications, conditionalizing the test’s uses and applications, and describing procedures (see Table 3).

As the study progressed, I became increasingly interested not only in the pragmatic action of the guidelines, but in how the authors of the guidelines structured their claims to translate Wehmeyer’s theory of self-determination into concrete practices.

This led me to key in on their use of “validity” and “reliability” as hedge words. During my initial analysis, I noticed that references to validity and reliability seemed particularly salient in the context of the authors’ attempts to establish credibility, but that they appeared to be doing other pragmatic work as well. For example, in one series of statements, Wehmeyer et al claim that administrators can improve the validity of results if they “[e]mphasize that, no matter what participants answer, as long as it is truly what they believe or feel it is the right answer. Ensure confidentiality and put students at ease”

(Wehmeyer & Palmer, p. 3). This statement invokes validity to position a particular set of speech acts, and a particular administrator affect, as necessary for realizing Wehmeyer’s theory of self-determination.

I ran a NVivo text search query for words including the roots “valid” and

“invalid,” which produced 65 references in SDS-A, four references in SDS-SF, and four references in SDS-PS. Running a similar query for “reliable” and “unreliable” produced

28 references in Guideline A, one reference in Guideline SF, and one reference in

Guideline PS. I then cross-compared these references with my initial data set, which

101 revealed how the authors’ invocations of validity and reliability mapped onto the pragmatic moves identified above. After generating a new set of claims based on this cross-comparison, I turned to Halliday’s Systemic Functional Linguistics (SFL), in particular his concept of register, as a way to dimensionalize the pragmatic work of references to validity and reliability with regard to their ideational, interpersonal, and textual meta-functions. This procedure furnished insights into (a) how the authors employ hedges to realize validity and reliability as linguistic objects within the Hallidayan field, subject to interactions and relationships with other linguistic objects (e.g.,

“administrator,” “student,” etc.); and (b) how such hedging constructs the necessity underlying test administrators’ actions.

Halliday defined register as the “clustering of semantic features [in a discourse] according to situation types” (1978, p. 68). The term denotes how certain situations (in this case, an assessment) give rise to semantic patterns in language that in turn shape how the situation plays out. Halliday identified three semantic characteristics, or meta- functions, of situation-bound language—the ideational, the interpersonal, and the textual—each corresponding with a distinct variable of the situation: field, tenor, and mode. The “ideational” function of language pertains to its propositional content: that is, how discourse represents actions, persons, objects, and settings within the “field,” where the field is defined as the system of participants, objects, settings, and practices that together make up the situation. The “interpersonal” function describes relationships among participants (the situation’s “tenor”), primarily through the lexico-grammatic system of mood. Finally, the textual function of language denotes how information is

102 organized within the mode, or channel of communication. Halliday’s notion of register is useful for analyzing how the lexico-grammatical features of hedges (specifically, validity and reliability claims) realize semantic meanings that in turn realize pragmatic effects.

My decision to extend my analysis to the SDS’s scholarly metacontexts came once I’d analyzed all initial data. Conversations with my committee members indicated that attending to the intellectual history of Self-Determination Theory (SDT) could enrich the analysis’s discussion of how the SDS translates SDT into practice. My decision to examine citations in particular did not emerge from grounded coding techniques, but from an a priori assumption about citation’s importance in the translation of psychological theory into practice. In the Analysis section below, I begin with this part of the discussion, to provide a more complete sense of the history of the SDS’s development and underlying theory before diving into the guidelines.

Originally, I designed this study to incorporate observations of students (a) taking the assessment and (b) discussing their assessment results with member of their support team as part of their Person Centered Planning (PCP) meetings. Though I received permission to observe STEP students in their PCP meetings, I was unable to do so for logistical reasons. With one exception, my interviews with the students did not touch on the SDS, focusing instead on student self-advocacy practices. I thus have little empirical data on how the SDS test results get taken up by STEP students, either individually or in group interactions involving instructors and other members of the students’ support teams. While I have not analyzed the student accounts of self-determination/self-

103 advocacy for thematic similarities with the SDS, such an analysis might prove a useful next step.

Analysis Pt. 1: Citations

The Arc’s Self-Determination Scale (SDS) debuted in 1995, in an era when U.S. schools were attempting to work out how best to implement the edicts of IDEA and the

ADA (see Lipsky & Gartner, 1997). It built directly on Wehmeyer’s 1992 synthesis of various strands of SDT—notably, that of Deci and Ryan (1985)—and theorizations of related constructs (namely, locus of control (Lefcourt, 1976), self-efficacy (Bandura,

1977), and self-regulation). Wehmeyer would dub this theoretical synthesis “the functional model of self-determination.” In turn, this model served as a theoretical basis for the construction of the SDS scale protocol.

I begin this section by briefly summarizing the germinal work of Edward Deci and Richard Ryan (1985). I then examine its uptake in Wehmeyer’s “Self-Determination and the Education of Students with Mental Retardation” (1992), in The Arc’s Self-

Determination Scale (1995), and in later versions of the SDS Procedural Guidelines. By tracing a single source, my goal is to think through the ways in which academic genre conventions, especially citation, afford particular possibilities for praxis. Later versions of the Procedural Guidelines contain no references to Deci and Ryan and very few scholarly citations generally. As Wehmeyer and his co-authors gradually pruned down the 1995 SDS document to be more useful to test administrators, they cleared away much of the technically sophisticated, “hieratic” (Bazerman & Paradis, 1991) discourse of

104 theory and scale construction in favor of technical, exhortative discourse more suited to the testing task environment. These revisions, not without tradeoffs, were spurred by the exigences of operationalization, a construct closely aligned with praxis.

The primary source for Wehmeyer’s functional model of self-determination is

Deci and Ryan’s highly influential Intrinsic Motivation and Self-Determination in Human

Behavior (1985). The book advances the authors’ interpretation of the empirical finding that sources of external motivation, such as rewards, can in fact diminish one’s persistence at, and enthusiasm for, a given task. People are rather motivated, Deci and

Ryan argue, by an inherent need for competence and self-determination, defined as “the capacity to choose and to have those choices be determinants of one’s actions” (p. 38).

Accordingly, one’s perception of their competence and self-determination correlate with their level of intrinsic motivation: the more competent and self-determined (autonomous) one feels, the more they are likely to persist in a task, and enjoy it, without regard to external consequence. Deci and Ryan would champion self-reports over behavioral analysis as the best way to measure these determinants of intrinsic motivation, a methodological position that would significantly influence the development of the SDS.

In sum, Deci and Ryan’s book stakes out self-determination, formulated as the capacity to have one’s choices determine their behavior, as key to one’s educational and professional success, even their basic wellbeing.

In “Self-Determination and the Education of Students with Mental Retardation,”

Wehmeyer (1992) would synthesize Deci and Ryan’s positions on self-determination with psychological and motivational research on control and perceptions of causation

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(Lefcourt, 1976); Albert Bandura’s (1977) Social Learning Theory, in particular the concept of self-efficacy; and psychological research on self-regulation. These various strands of thought, mostly published in the 1970s, were attempts to push back against

Freudianism and the growing popularity of B. F. Skinner’s behaviorism, which, according to its detractors, posited a mechanistic vision of human motivation with negative consequences for educational, managerial, and clinical policy and practice.

Lefcourt in particular insisted on experiences of control (causal agency) as fundamental to one’s health and wellbeing in an age of rapid urbanization and increased alienation. In his essay, Wehmeyer cited studies demonstrating low levels of student choice in special education classrooms and teacher inattention to students’ expressions of individual preference, framing these as exigences for greater engagement with SDT in special education. He inveighed in particular against overly controlling educational environments that emphasized remediation over encouraging self-efficacy, or the belief in one’s own competence (p. 310). Synthesizing these ideas, Wehmeyer would ultimately formulate a more complex definition of self-determination than Deci and Ryan’s, one encompassing not simply autonomy but also notions of self-actualization and self-regulation:

“To sum, self-determination refers to the attitudes and abilities required to act as the primary

causal agent in one’s life and to make choices regarding one’s actions free from undue external

influence or interference. It involves autonomy (acting according to one’s own priorities or

principals), self-actualization (the full development of one’s unique talents and potentials) and

self-regulation (cognitive or self-controlled mediation of one’s behavior).” (p. 305)

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Significantly, Wehmeyer would emphasize Deci and Ryan’s philosophical conjecture that self-determination is a fundamental human need, both paraphrasing it

(“intrinsic motivation is based upon innate, organismic needs of the individual”) and quoting them directly (“‘it [self-determination] is more than a capacity… it is a need, an innate propensity to be self-determining that leads organisms to engage in interesting behaviors’ […] (p. 38)”) (p. 303). These theoretical claims would ultimately serve as an unstated premise of the closing argument of Wehmeyer’s essay, an enthymeme solidifying the idea that teaching self-determination to students with I/DD was a moral imperative:

“In the end, however, perhaps the most compelling reason to make these issues

priority is one of human dignity. The recognition that individuals with mental

retardation have a right to be self-determining is a recognition of human value and

acceptance. In order to become a fully inclusive society, this recognition is an

imperative.” (p. 311)

Positioning self-determination as a fundamental human need by way of Deci and Ryan enabled Wehmeyer to argue, quite persuasively, that refusal to recognize the self- determination of students with I/DD amounted to a refusal of their basic humanity.

Wehmeyer (1995) would once again invoke Deci and Ryan’s arguments about self-determination’s moral importance to support SDT’s uptake in The Arc’s Self-

Determination Scale. But in this document, he no longer positions their work as the

107 primary departure point for the audience’s understanding of self-determination; rather, he locates the concept’s origins in the disability rights movement, which, as he explains, equated self-determination with empowerment (p. 13). Whereas in the previous document he credits Deci and Ryan as the authors of “the most extensive exploration of self- determination as a psychological construct” (1992, p. 303), in the 1995 text, they appear as one among a chorus of researchers championing self-determination. After devoting a paragraph to summarizing their work, Wehmeyer signals that his definition of self- determination owes less to their focus on autonomy and more to the disability rights movement’s focus on empowerment. Later, he reiterates their distinction between causal agency as the perception that one has caused something to happen versus causal agency understood as having control over one’s life (p. 17). These are the only two instances in which the 1995 document cites Deci and Ryan’s work.

These changes reflect the 1992 and 1995 documents’ different exigencies, audiences, and purposes. Whereas the 1992 essay was a proof of concept designed to persuade special education researchers to embrace self-determination as a learning outcome and overall educational philosophy, the first three chapters of The Arc’s Self-

Determination Scale are a proof of concept aimed at a more diverse audience of researchers, government grantors, practitioners (teachers), and the public (parents,

‘consumers’). The aim of the new document was to motivate these individuals to use the assessment; to get them to accept the SDS, not to accept SDT. Wehmeyer thus writes as though the question of SDT’s applicability to special education had already been worked out, settled by the expert readers of Education and Training in Mental Retardation and

108 the U.S. Department of Education, which provided funding for the SDS’s development.

In The Arc’s Self-Determination Scale, the debate at the heart of the 1992 essay becomes the background of a new call to action, creating in turn a new context for praxis.

I do not trace this transformation of Deci and Ryan’s ideas across two documents because their ideas are sacrosanct; rather, my purpose is to illustrate how academic genre moves such as citation, quotation, and paraphrasing are consequential within the scope of a technoscientific text ecology whose collective purpose is to facilitate the translation of ideas into action. Scholarly citation practices are important boundary-making devices

(Barad, 2003, p. 822) whereby writers provide warrants and backings for knowledge claims (Berkenkotter, 2001, p. 340) and signal to readers that a type of social process is underway involving an ‘exchange’ of ideas. Paraphrasing transforms ideas to fit particular rhetorical purposes, while citation offers writers a means of (re)presenting their sources while claiming authority for their ideas. As texts evolve over time to suit new audiences, exigences, and purposes, the pathways whereby readers access the ideas necessary for praxis shift.

While the 1995 SDS bears formal resemblances to Wehmeyer’s 1992 article, it is best understood as a hybrid document, an intermediary genre (Tachino, 2012) mediating between theory and practice. It is a prime example of what Charles Bazerman and Jim

Paradis (1991) have termed the “operational” mode of texts. Operational texts, they explain, “do not follow the rhetorical models of formal professional research, although they invoke the authority of expertise to make their general recommendations.” They are sites “where the expertise originating within the more narrowly defined research

109 processes is rhetorically transformed” to “guide human actions” (p. 8).23 In addition to scholarly citation, both the 1995 SDS and Wehmeyer’s 1992 article exhibit classic features of scientific discourse such as technicality and reasoned argument (Halliday,

2004), hedging (Hyland, 1998), and impersonality (Hyland, 2002). Indeed, I found more instances of hedging and technicality in the 1995 SDS than in the 1992 article, mainly in the former’s chapters on scale construction and administration—a somewhat surprising finding, given the differences of venue and audience. At the same time, the 1995 document, in its attempt to persuade a more general audience of the SDS’s usefulness and credibility, also employs more emotional appeals than Wehmeyer’s earlier essay, particularly in its introduction and “Theoretical Issues” chapter. This blend of registers

(Halliday) marks the 1995 SDS as a hybrid space, a unique mishmash of genres compiled in response to multiple exigences (convincing the psychometric community of the scale’s validity, persuading folks with I/DD and their allies to use the scale, fulfilling grant requirements) and multiple audiences.

In such a context, Deci and Ryan’s ideas take on diminishing importance. Later versions of the 1995 document (retitled The Arc’s Self-Determination Scale Procedural

Guidelines (Wehmeyer & Palmer, 2014)) would omit the chapter on theoretical issues altogether. Compared to the 1995 SDS, the 2014 edition of the Adolescent SDS, while

23 In social psychology, the concept of operationalization refers to “the process by which a researcher defines how a concept is measured, observed, or manipulated within a particular study.” Operationalization “translates the theoretical, conceptual variable of interest into a set of specific operations or procedures,” thus providing “the bridge between theoretically based hypotheses and the methods used to examine these predictions” (Burnette, 2007).

110 preserving the chapter on “Scale Construction and Development,” makes no mention of

Deci and Ryan’s work. The 2014 reference list is far less extensive and appears not at the end of the document, but at the end of the chapter on scale construction—further indication of a shift in purpose away from theory toward scale administration. The Short

Form and Post-secondary versions of the Procedural Guidelines, also published in 2014, omit the scale construction chapter, too, and contain no scholarly references, preserving only a shortened version of the original “Administration” chapter and the scoring guidelines. These documents are more fully ‘operational;’ the generic boundaries between them and theory more adamant.

The significance of such genre boundaries for praxis is that they demarcate opportunities for reflection from occasions for action. By using citations, paraphrasing, and quotation to contextualize knowledge claims, scholarly texts invite audiences to critically engage with ideas—to see them as historically contingent. Together, these discursive practices signal that an idea is not final but rather part of an ongoing

‘conversation.’ Of course, lay readers and expert readers will respond to the presence of citations in a text very differently; for the former, their appearance can shut down the critical impulse. Nevertheless, if nothing else, a citation presents the reader with an opportunity to follow an idea to its source. The relative paucity of citations in operational texts such as the SDS signals a different kind of activity, one more concerned with command-and-response than reflection. Hybrid genres like the 1995 SDS reveal that these boundaries are less rigid than typical textual practice would suggest.

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Analysis Pt. 2: Validity and Reliability Claims

The scholarly conversation surrounding the SDS attests to self-determination’s rhetorical elasticity as a theoretical concept. Both hieratic texts like Wehmeyer’s 1992 essay and hybrid texts such as The Arc’s Self-Determination Scale (1995) enact transformations of theory to suit unique rhetorical purposes. Psychometric methods of knowing-making—operationalizing constructs, defining measurable variables, designing measurement devices, conducting statistical analyses to ascertain the measure’s validity, etc.—enact further transformations of theory, imbuing certain questions (e.g., “How often do you listen to music that you like?”) with the power to say something meaningful about a person’s self-determination. In practice, for such measurements to hold true—for theory to effectively come alive—certain procedures must be followed: students must answer truthfully, administrators must record and interpret their results in a particular manner, and so on. This section is about how psychometric text manuals such as the SDS

Procedural Guidelines mediate these procedures, and the implications thereof for praxis.

In particular, I focus on Wehmeyer et al’s use of hedging in the SDS Procedural

Guidelines. Ken Hyland (1998) defined hedging as “any linguistic means used to indicate either a) a lack of complete commitment to the truth value of an accompanying proposition, or b) a desire to express that commitment categorically” (p. 1). Studies of hedges in scientific writing are frequently concerned with the epistemological consequences of hedging, or the question “what does hedging do to/for knowledge?”

Jeanne Fahnestock (1986), for instance, examined how popular science writing tends to strip hedges from scientific claims, resulting in exaggerated interpretations of scientific

112 findings. Similarly, biologist Kelly Horn (2001) found that citations of hedged statements in biological research articles tended to transform the original meanings of the cited content, in turn altering the uncertainty accorded past results. More recently, Lauren

Kolodziejski (2014) traced the origins of the international autism vaccine controversy to strategic hedging in a Lancet article, arguing that hedging can be a way of spreading misinformation.

How do hedges, understood as ecological phenomena, generate certain possibilities for praxis? While hedging in psychometric writing no doubt has major epistemological implications for public understanding of psychological phenomena, my findings suggest that writers of psychometric assessment guidelines employ hedges in order to achieve particular pragmatic effects necessary for the successful execution of the assessment process. My focus in this analysis is particularly indebted to Hyland’s (1998,

2005) work on the interpersonal features of scientific hedging. In interviews with scientists about their writing, Hyland found that “[b]y marking statements as provisional, hedges seek to involve readers as participants in their ratification, conveying deference, modesty, or respect for colleagues [sic] views” (2005, p. 179). By looking at the SDS

Procedural Guidelines, I attend specifically to these interpersonal and pragmatic dynamics of hedging as they play out between experts and practitioners in the

‘operational’ textual mode. Employing concepts from Halliday’s (1978, 1994a, 1994b)

Systemic Functional Linguistics, I analyze the SDS guidelines for the lexico- grammatical, semantic, and pragmatic features of hedges. I conclude that operational texts provide a medium whereby psychologists graft hedges onto objects, claims,

113 processes, and relationships, in turn materially shaping the contexts of assessment and the results of measurement to conform with psychological theory.

Classic markers of hedging include words such as ‘probably,’ ‘usually,’ and

‘perhaps’ and references to constructs such as validity and reliability. I take validity and reliability in particular as my departure points, both because they appear frequently in my data and because they index the disjuncture of epistemological and pragmatic concerns that tend to inflect studies of hedging in scientific writing. While scientific discourse promotes the idea that validity and reliability exist independent of human intervention,

Janice Lauer and Patricia Sullivan (1993) explain that validity and reliability “serve as ground rules for discriminating the quality, value, and credibility of studies and results.”

Specifically, the notions act as “rules of evidence and inference agreed on and continually refined by the research community” (p. 163). According to Lauer and Sullivan, validity

“signifies” that a study (or a test) comports with the research community’s theories and guiding paradigms, while reliability signifies that a single phenomenon can be observed similarly, if not identically, by multiple observers (pp. 164-6). With both constructs, access to “reality,” whether that be a quantity of nitrous dioxide, a cultural pattern in a particular community, or a student’s psychological state, is inevitably mediated by networks of human (and non-human) agents who agree that the phenomena under investigation correspond to a set of discursively specified criteria.

O’Neill, Moore, and Huot (2009) observe that this social-constructivist view of scientific knowledge-building distributes the power to determine the validity of test results among experts and local practitioners. Whether or not an assessment is ‘valid’

114 hardly matters if teachers, clinicians, and other actors ‘on the ground’ do not see it as such (p. 45). This arrangement puts significant pressure on operational texts such as assessment guidelines used to enroll local actors in facilitating the assessment process. If local resistance to the validity claims of psychometric assessments—resistance based on networks of local knowledge and ideology—is not anticipated and dealt with in such texts, the knowledge claims of psychometric measures might fail to gain a footing at all in educational settings where psychologists hope to do work. Validity and reliability claims, and hedges generally, must therefore be seen as doing more than persuading other experts (even the public) of a given assessment’s epistemological merits; in addition, they should be seen as involving negotiations between experts and practitioners of the meaning of particular actions within local contexts of assessment.

In psychometric theory, self-report questionnaires are thought to have unique problems with validity and reliability. There are ‘subject-based’ threats to validity, ranging from participants’ energy level to acquiescence bias, defined as disingenuous responses based on the participant’s desire to please the administrator (cf Paulhus, 1984).

In addition, the administrators themselves are a potential source of error: if they do not understand the importance of participants following test instructions, or if they hold certain prejudices about the ability of participants to respond to certain questions, they can compromise the validity of results. This latter issue is especially prominent in assessment of students with I/DD. From the test designer’s perspective, self-report questionnaires’ problems with validity and reliability make precise, compelling test instructions all the more critical for successful completion of the test.

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In addition to helping administrators settle questions about how to interpret and manage students’ responses, the SDS Procedural Guidelines are designed to execute the following pragmatic tasks: convincing the reader of the test’s credibility, defining the qualities of the ideal test administrator, conditionalizing uses and applications of the scale, and describing testing procedures. My analysis found that most statements in the

SDS Procedural Guidelines conform to one or more of these four categories. Table 3 provides further explanation of each, along with examples from my data.

My lexico-grammatic analysis revealed that hedging in the SDS Procedural

Guidelines (a) constructs readers as strategic doubters and (b) directs their skepticism along certain channels to realize particular test outcomes. In the context of a larger, technoscientifc text ecology, these hedges perform the meaningful agential work of constructing reader orientations to knowledge—or more accurately, sources of knowledge: local experts, research articles, the guidelines themselves, the utterances/rhetorical performances of students. Hedges help determine which of these things count as knowledge of self-determination. In this way, hedges, understood as pragmatic and not merely epistemic resources, help constitute readers as nodes in the ecology, configuring their material relations/proximity to texts.

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Table 3 Pragmatic Functions of the SDS Procedural Guidelines

Category Example from data

Constructing credibility “The authors’ experiences with the Scale indicate that people with disabilities are motivated to engage in the activity because it Definition: Moves that aim to focuses on their interests, abilities, and feelings” (Wehmeyer & convince the reader of the test’s Palmer, p. 5). credibility (i.e., that the test provides a valid and reliable “A multiple discriminant function analysis was conducted to measure of self-determination) and identify essential characteristics that are important for the credibility of the authors distinguishing between people with intellectual disability who were self-determined and those who were not […]” (p. 14) Defining test administrator “The most important ‘qualifications’ for users are difficult, if not qualities impossible, to teach or train: (1) acceptance of the importance of the involvement of individuals with disabilities in planning and Definition: Moves that aim to decision-making; (2) commitment to involving the person with a compose an image of the disability as an equal partner in the process of goal setting and administrator, presenting their role decision making; and, (3) respect for people with disabilities as and their necessary and/or preferred equal and contributing members of our society” (Wehmeyer & qualifications Palmer, 2014, p. 7).

“Individuals administering The Arc’s Self-Determination Scale- Post-Secondary Version should become thoroughly familiar with each domain and administration instructions for each” (Wehmeyer et al, 2014a, p. 4). Conditionalizing uses and “The Arc’s Self-Determination Scale-Adolescent Version is a applications of the scale vehicle for eliciting discussion about the cause of a low level of self-determination, if appropriate, and potential interventions to Definition: Moves that aim to remedy this situation, but not to identify such causal explain or contextualize the test’s relationships” (Wehmeyer & Palmer, 2014, p. 4). purpose, strengths, and limitations and to define parameters for its use “The full version of the Scale was designed, field-tested, and validated for use with students with cognitive, developmental, and other disabilities. The short-form version of the Scale has been validated with adolescents with and without disabilities” (Wehmeyer et al, 2014b, p. 4). Describing procedures “It is acceptable for the teacher or administrator to restate the directions, expanding or defining them if necessary, to define Definition: Moves that aim to words within the questions that students find problematic or to influence how certain actions explain what the various answering options mean. It is important required for the test’s completion— that the teacher not be directive when describing options for the including speech acts, physical student to answer, but simply provide information to the student” actions, managements of time and (Wehmeyer et al, 2014b, p. 6). space, and interpretive procedures—are carried out “Desks should be clear of other objects and the environment should be free from distraction” (Wehmeyer et al, 2014a, p. 5).

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In many cases, the examples I share below could reasonably fit into multiple pragmatic categories. Consider the following statement, which appears at the very beginning of the SDS-PS guidelines:

“The administration and scoring of The Arc’s Self-Determination Scale-Post-

Secondary Version requires minimal special preparation: familiarity with the

questions on the Scale, its appropriate use, and knowledge about the students with

whom the Scale is being used.” (p. 4)

First and foremost, this statement defines the test administrator’s ideal qualifications through listing things the SDS administrator should know. At the same time, it conditionalizes the test’s uses and applications by implying that the administrator knowing these things is in some way key to the successful completion of the testing process. It constructs credibility through its modal properties (its expression in the declarative indicative mood, for instance, evincing certainty). And it describes material procedures, suggesting things for the administrator to do and a timeframe for doing them.

All four pragmatic moves are present in this statement, though some are arguably more salient than others.

1. Constructing Credibility

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One of the chief rhetorical functions of the guidelines, particularly in the early days of the SDS, seems to have been convincing readers of Wehmeyer et al’s expertise in psychometrics and hence, the credibility of the test protocol itself. In general, credibility moves seek to provide information pursuant to preserving the test in its present form; administrators will be less inclined to change the wording of questions or deviate from the guidelines if they can be persuaded of the test’s credibility. These moves have the unique task of confining the reader’s doubt within certain limits, setting boundaries on what the reader can and cannot question. I found such moves throughout all versions of the SDS, particularly in the original SDS’s “Scale Construction and Development” and

“Reliability and Validity” chapters. Written in the style of a scientific report, these chapters provide detailed explanations of how the test was made, definitions of key constructs, and reports on the results of factorial analyses and other validation procedures.

The following quotation is an example of a typical credibility move written in scientific-report style:

“Stancliffe (1995) evaluated the degree to which acquiescence response bias

posed a threat to the validity of the Life Choices Survey and found a negligible

level of acquiescence (1.4% of all responses from adults with intellectual

disability were associated with acquiescence).” (Wehmeyer & Palmer, 2014, pp.

11-12)

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To shore up the reader’s faith in their assessment, Wehmeyer et al mobilize a citation tying their credibility to Stancliffe’s evaluation of the Life Choices Survey, a questionnaire upon which parts of the SDS was based. A move like this would hardly be surprising in a scientific report, but is slightly more interesting in the context of a user manual. As discussed above, citation in scientific research is used both to establish the author’s credibility and to link the reader to other texts in a larger ‘conversation.’ In this context, citation is less an invitation to converse, explore, or doubt than evidence of quality assurance. Specifically, Wehmeyer et al designed this statement in such a way as to mitigate the imagined reader’s concern over the SDS’s vulnerability to acquiescence bias. By situating “Stancliffe,” the outside expert and stand-in for scientific authority, as the sentence’s actor and subject, they suggest that acquiescence bias can be nullified by agents with the authority to do so—indeed, has already been nullified, given their use of the past perfect tense. Sealed in the past, the threat of acquiescence bias is thusly diminished. This sense of temporal distance is accentuated by the authors’ placement of

“Stancliffe” and “found” at the beginning of the sentence’s two independent clauses (the

“thematic” position, per Halliday).

The implication of this statement—that the SDS is more or less immune to acquiescence bias because the Life Choices Survey is immune to such bias—is dubious from a scientific perspective. While questions on a test can certainly be worded in a way that makes some responses seem more socially desirable than others, the risk of acquiescence bias depends just as much on the individual test-taker, the setting, and the administrator. Far from impugning the scientific abilities of Wehmeyer et al, who are no

120 doubt cognizant of acquiescence bias’s complexities, this logical slippage is an affirmation of the rhetorical complexity of technoscientific writing. Operational guidelines must steer readers along an achievable course of action. Give the test administrator too much reason to doubt, and they will question the validity of every item on the test (which, if they were scientists, they probably should). Give them just enough, and they will be vigilant for the validity threats you as the writer deem appropriate, given their level of expertise. In essence, credibility moves that attest to the test’s pre-packaged validity enable test administrators to get on with their work.

As mentioned previously, as the SDS grew in popularity, later versions of the test omitted the chapters on scale construction, validity, and reliability entirely. Perhaps the authors assumed their lay readers lacked the expertise, time, or interest to unpack this more hieratic material. Yet by including such material at all, the authors position administrators, even if fictively, as skeptics, questioners, doubters. The removal of citations and other credibility appeals from later versions of the guidelines could in this respect diminish the administrator’s ability to arrive at a sound, ethical judgment of the test’s validity, making them less inclined to seek out corroborating evidence of the SDS’s claims.

2. Defining Test Administrator Qualities

Moves of this second type are interpellative, in that they construct an image of the ideal test administrator, emphasizing the practical knowledge administrator’s should

121 possess (familiarity with participants, knowledge of test items); the values they should hold regarding the inclusion of people with I/DD in educational planning; and, to a lesser extent, desired professional qualifications (teacher, tutor, etc.). These moves help the reader of the SDS guidelines discriminate their role in the assessment process. This is a distinct, though not altogether separate, operation from mere description of the assessment procedures. Per Charland (1987), interpellative moves constitute subjects through language. They prepare the reader for their task by working upon their sense of self, fashioning a distinct ‘test administrator’ subjectivity for the reader to step into. They are thus often characterized by use of epistemic verbs such as ‘value’ and ‘believe.’

Descriptions of procedures, by contrast, tend to contain what Halliday refers to as material process verbs, as they are primarily concerned with the administrator’s actions.

In the following excerpt, Wehmeyer et al go to work on their readers’ subjectivity by appealing to their sense of themselves as good people who value inclusion:

“The key to ensuring valid self-reports is to convince participants that what they

believe is very important. To do so, one must genuinely believe this. This means

acting on people’s perceptions in a manner that is respectful, nonjudgmental, and

promotes active involvement in one’s surroundings and activities” (Wehmeyer &

Palmer, 2014, p. 3).

While Wehmeyer et al could have made such an argument strictly on moral grounds, they are impelled by genre conventions to couch their appeal in scientific terms, again

122 invoking validity. This tactic has the advantage of lending what is basically a pathetic appeal an air of scientific credibility. On their face, these three sentences share many of the lexico-grammatical features of scientific discourse noted above. As in the previous example, the authors’ use of the declarative indicative mood realizes an expert-learner relationship between author and reader. But, while the statement’s illocutionary force is that of a command, the authors have replaced the implied subject (“you”) with a grammatical metaphor (“the key to ensuring valid self-reports”), thus realizing a greater emotional distance between author and reader.24 Given that the authors are basically challenging their readers to scrutinize their beliefs, such delicate phrasing helps them come off as polite, enabling the reader to save some face. In effect, the scientific stance

Wehmeyer and his team assume in this move works delicately upon the reader’s sense of self, figuring their personal beliefs as objects of scientific scrutiny. The first sentence’s invocation of validity activates the reader’s scientific skepticism; the following sentences tether this skepticism to the readers’ own beliefs, portraying beliefs and convictions (and acts of convincing) as sources of potential bias.

In sum, by employing a scientific register, the authors take a claim that is in essence a moral imperative—and a veiled judgment about the test administrator’s character—out of the interpersonal realm and into the epistemic. This frames inclusive beliefs as necessary not for social cohesion, but for bringing certain truths, certain realities, about. At the same time, it builds a particular path for the reader’s doubt. By

24 See Halliday, 1994b; Simon-Vandenbergen, Taverniers, and Ravelli, 2003 for more on illocutionary features of grammatical metaphor.

123 forming a link between the administrators’ potential biases and the student’s test results,

Wehmeyer et al again define what the test administrator is entitled to question.

3. Conditionalizing Uses and Applications

Placing strict conditions on how tests may be used is key to ethical psychometric practice (Rust & Golombok, 1999). As discussed above, there are risks involved in psychometric testing of any sort, especially so in cases where participants might be more prone to suggestion. The risk is amplified in settings where the persons responsible for administering the test might not have the kind of formal psychological training needed to accurately judge the results of the test. Inappropriate judgments about students’ abilities or the types of classroom interventions best suited to helping them can severely hamper a student’s educational progress, to say nothing of the potential hazard to their mental and physical wellbeing. Wehmeyer and his team therefore take great care in emphasizing both what uses/applications the SDS was designed for and what it was not designed for.

‘Conditionalizing moves’ appear throughout the SDS guidelines in many forms, primarily in the “Introduction” and “Administration” sections. They tend to be thought- rather than action-oriented, appearing in informational formats as opposed to command formats. In the following example, Wehmeyer et al describe who the test was designed for, once again by invoking validity:

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“The short-form version of the Scale [SDS] has been validated with adolescents

with and without disabilities.” (Wehmeyer, Palmer, Shogren, & Seong, 2014b, p.

4)

This statement explains that the SDS was normed specifically for use by adolescents, and that administering it to children or older adults might not yield useful results. While the authors could have written this statement as a command—'give only to adolescents’— they once again adhere to the lexical and grammatical norms of scientific register. As a result, the statement focuses not on the reader, but on the scale, which appears as the sentence’s theme, and to a lesser extent the participants. While previous versions of the

SDS explain how the test was validated in some detail, the version in which this statement appears does not. The past-tense finite verb phrase “has been validated” is all the information the reader has to go on. Like the credibility move discussed earlier, this conditionalizing move locates the validity of the scale protocol in the past, beyond the reader’s influence, thus settling the matter of who ought to take the test.

4. Describing Procedures

In his rhetorical analysis of operator manuals, Jim Paradis (1991) found that one of the key elements of operational texts is the “procedural element.” Most operational texts, he wrote, contain either a “loose narrative of representative steps the operator takes to apply the tool” or a “narrative sequence of precisely defined actions that furnish a

125 behavioral template on which the operator must model his or her actions” (p. 258).

Wehmeyer et al devote considerable attention to this procedural element, explaining how the test ought to go, in particular how it ought to be scored. The SDS-SF and SDS-PS are more or less purely procedural documents. In the SDS-A, the procedural bits begin on p.

31, after the discussion of user qualifications, appropriate vs. inappropriate applications of the scale, and scale construction.

In all three versions, a section titled “Tips for Administering the Scale” is the reader’s source for a step-by-step description of the test administration process. This section explains how much time should be set aside for the test, how the room should be set up, how participants should be instructed to complete the test, and how administrators should interact with participants. It also includes information about accommodations for students who may need extra time or help completing the scale. At the beginning of the section, a brief paragraph explains the following:

“To ensure adequate reliability and validity, it is important that the following

procedures for administering the Scale be adhered to as closely as possible.”

(Wehmeyer, Palmer, Shogren, & Seong, 2014a, p. 4)

This sentence frames the reader’s adherence to the test procedures—or “tips”—as yet another matter of validity and reliability, infusing instructions like the following with epistemic as well as deontic necessity:

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If students do not understand vocabulary used in the test items, the examiner

should give a brief definition of the word(s) in question. In so doing, it is

imperative that the examiner not place undue emphasis on any outcome or answer

or influence the students [sic] answer in any way.” (Wehmeyer et al, 2014a, p. 6)

This particular procedural move is interesting, in that it places language itself in the sphere of objects with admitted power to alter the validity of the test. More precisely, it attempts to position the administrator as a skeptic of their own spoken utterances. In cautioning administrators to be choosy with their words, Wehmeyer et al appear to acknowledge that even linguistic acts as supposedly ‘neutral’ as definition have persuasive potential. They convey this caution using multiple modal phrases—

“adequate,” “it is important,” “as closely as possible,” “brief,” “it is imperative,” “in any way.” These alert the administrator to the highly delicate nature of their enterprise. Once again, Wehmeyer et al deliver these cautions in the declarative indicative mood, maintaining the distance between author and reader established in earlier sections. Use of grammatical metaphors in the first and third sentences reinforce this distance. Wehmeyer et al thus constrain the administrator’s agency, interpellating them into an expert-learner relationship. By turning the administrator’s attention to the power of their own spoken utterances, Wehmeyer et al attempt to exercise some degree of control over the symbolic context of the testing situation.

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Conclusion

From Deci and Ryan’s (1985) Intrinsic Motivation and Self-Determination in

Human Behavior to the latest version of the SDS Procedural Guidelines, it is possible to chart a trajectory of SDT into practice. I have suggested this trajectory can be traced not only via citation, quotation, and paraphrase, but via hedging, validity/reliability claims in particular. These ‘discourse features,’ though typically seen as epistemological, can be productively understood as rhetorical and pragmatic. They impel action. Methodologies such as SFL, by virtue of their granularity, help reveal how citations and ‘mental’ concepts such as validity in fact index concrete, material relationships among human and nonhuman actors. Woven into persuasive claims, these moves impel readers to enact theory, turning it into reality.

This praxis-oriented model of scientific communication, in contrast to rationalist models that emphasize persuasion and understanding, riffs on the idea that genres are pragmatic, rhetorical, and malleable. Discursive features such as citation, quotation, paraphrasing, and hedging can be used to mark boundaries between genres, to keep knowledge in silos; or they can be used to open up relationships (pathways) among readers, texts, and contexts. Centering praxis is thus one way technoscientific communicators can understand the relational impacts of the artifacts they compose. This perspective, in turn, can perhaps lead to better ways of ‘doing’ psychometrics with students with I/DD—not ‘to’ or ‘for’ them.

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Chapter 4. The Professional Self-Advocate: Toward an Accessible Public Sphere

Introduction

On July 7, 2017, 16 protesters were arrested on charges of criminal trespassing for refusing to leave a sit-in at the Columbus office of Republican U.S. Senator Rob Portman

(Aubry, 2017; Namigadde & Rosenberg, 2017). The protesters, who had been organized by the grassroots disability rights organization ADAPT, had gathered at the senator’s office in an effort to convince him not to support legislation to “repeal and replace” the

American Affordable Care Act (ACA). Columbus police reportedly told the group, many of whom were wheelchair users, that they were obstructing Columbus Division of Fire medics from attending to a person in the building who was suffering chest pains.25 When the protesters refused to leave, police informed them they were under arrest and, according to one protestor interviewed by a local TV station, began “physically pushing, shoving, dragging, [and] throwing” people from the building (Aubry, 2017). Much of the incident was caught on cell phone video, which shows police apparently tipping people

25 Local NBC affiliate WCMH-TV Columbus reported that when the medics were able to get through, they could not find anyone in need of help (Aubry, 2017).

129 from their wheelchairs and dragging a man by his arms across the lobby floor amid frantic yelling.26

Reaction to the incident on social media was swift. On Facebook, a livestream of the video, posted by ADAPT, received over 15,000 views and 360 shares. Commenters from around the world expressed indignation (“America is better than this! Abuse of the disabled!”), solidarity (“Yes the world is watching. Solidarity from Australia”), and resolve (“Rather go to jail than die without Medicaid…”). Some called upon the police to have greater sympathy for the protesters’ demands (“How many of the police there have pre existing conditions, how many of their loved ones. Is this how they’d like them to be treated?”). Others asked urgent questions about what was happening on the ground

(“Don’t move” “Where will folks be taken?” “Did they ever provide an interpreter”) and encouraged those who were there to be safe (National ADAPT, 2017).

The protest and arrests at Portman’s office represented one of many such incidents that were documented and posted online in early summer 2017. Another dramatic cell phone video recorded outside Senate Majority Leader Mitch McConnell’s

Washington D.C. office on June 21 showed disabled demonstrators screaming “No cuts to Medicaid!” as Capitol police dragged them off the premises (Stein, 2017).

Collectively, these protest actions, which received widespread media attention (the

Columbus incident was reported in outlets such as The Huffington Post and New York

Daily News), were widely viewed by commentators on the left as instrumental in turning

26 In the protests at Portman’s office, police justified their actions on the grounds that the building where

Portman’s office is located is technically privately owned.

130 a majority of the American public against the Republican Congress’s efforts to replace the ACA. The last of those repeal efforts, the so-called “skinny repeal” bill, ended in dramatic defeat when Republican Senator John McCain, who had recently been diagnosed with terminal brain cancer, voted ‘no’ along with Senators Susan Collins and

Lisa Murkowski. Reacting to the media’s fascination with McCain’s role in the story,

Elyse Wanshel (2017), in an article for The Huffington Post, affirmed the role of the protesters, writing, “[l]et’s praise the demonstrators dragged out of wheelchairs and arrested – not GOP Senators.”

The anti-ACA repeal protests of summer 2017 were merely the latest in a long line of nationally publicized demonstrations showcasing the U.S. disability rights movement’s power to affect sweeping political change. As they had in 1970s, 80s, and

90s, disabled protesters put their bodies and freedom at stake to help ensure that millions of Americans would keep their healthcare. In the media, these deeds were magnified to heroic proportions, further solidifying rhetorical associations between the disability rights movement and indelible acts of protest, such as the Capitol Crawl of March 12, 1990.

While obviously important, these highly publicized (and highly mediated) moments tell only part of the story of how disabled people and publics use rhetoric and writing to transform society. What other, behind-the-scenes rhetorical interventions must scholars in rhetoric and writing study to fully appreciate what Jay Dolmage (2014) refers to as the world-transforming “rhetorical entailments” of embodied difference (p. 3)?

While the focus of this dissertation has so far been on self-advocacy’s role in granting learners with I/DD access to colleges and universities, in this chapter, I widen

131 that lens to analyze the role of self-advocacy, specifically, in creating an accessible public sphere for people with disabilities. The anti-ACA repeal protests are but one example of how people with disabilities practice self-advocacy within democratic societies to accomplish their social and political goals. Much work goes on behind the scenes as well, where different kinds of rhetorical tactics are used to advance social justice and accessibility. This chapter follows in particular the work of a professional self-advocate, Christine Brown, as she attempts to build legislative support for programs like STEP (Self-Determined Transitions and Educational Progress) across the state of

Ohio. Christine identifies as a person with a disability who speaks on behalf of others with disabilities. She works primarily on behalf of individuals who identify or are identified as having I/DD. Through an interview with Christine and analyses of her rhetoric in meetings with legislators and gatherings of the Ohio Self-Determination

Association (OSDA), I construct an in situ account of professional self-advocacy’s rhetorical agency within democratic institutions. More specifically, I use grounded methods to focalize the rhetorical skills Christine demonstrates in her advocacy work, and relate these to the patterns of agency that emerge when she deploys these skills in deliberative settings (some large, some small). Recognizing that such skills are embodied,

I mobilize two constructs from disability studies, Tobin Siebers’ (2008) theory of complex embodiment and Aimi Hamraie’s (2017) critical access-knowledge, to ground

Christine’s rhetoric in her lived, embodied experience and public legibility as a person with a disability.

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To be sure, Christine’s communication abilities enable her to function effectively in spaces where many STEP students would struggle. At the same time, her speech is marked in ways that would read in many contexts as disabled. Policymakers’ recognition of Christine as a disabled person is an important part of her rhetorical effectiveness, in that it grants her access to many spaces nondisabled people could not enter. But her legibility is not the whole story. Writing against an inpsiration narrative that would center

Christine’s disability as the sole reason for her rhetorical effectiveness, while at the same time resisting an overcoming narrative in which Christine ‘overcomes’ her disability through exceptional skill, I attempt to work out the ways Christine’s legibility as a person with a disability interacts with her self-advocacy skills to enact agentic effects in traditional democratic public spheres. Using circulation theory, I then tease out the broader impact of Christine’s rhetoric by tracing its circulation through local networks.

This study thus sheds light on how political representation operates within a circulation framework to further the agency of marginalized communities; and shows teachers and scholars of professional communication ways of relationizing professional skills and rhetorical agency using grounded methods.

Background

Circulation has become a much discussed concept in rhetoric and writing studies, as scholars seek to grapple with the complex ways rhetoric moves through contemporary publics. Advocating for more attention to circulation as a “threshold concept” (Adler-

Kassner & Wardle, 2016), Laurie Gries and Collin Gifford Brooke (2018) trace

133 circulation’s emergence as a subject of interest through scholarly locations such as

Michael Warner’s (2002) conception of the public as a “space of encounter” (p. 90),

Catherine Chaput (2010) and Jenny Edbauer’s (2005) work on rhetorical ecologies, and

Mimi Sheller’s (2011) attempt to theorize mobility—spatio-temporal flow—as a complicated dimension of collective cultural formation. In so doing, Gries and Brooke offer an account of the many ways circulation invites fresh perspectives on age-old rhetorical problems. The concept of circulation helps scholars “see rhetoric as a distributed event that unfolds with time in and across networks of emergent relations” (p.

9); and it “reconfigure[s] theories of writing, rhetoric, and publics to account for discourse’s networked, distributed, and emergent aspects” (p. 15).27

From a circulation perspective, public protests appear to be one of the most powerful rhetorical tools available to minority groups in democratic publics. Their highly charged, physical nature tends to attract media attention, leading to iconic imagery such as the photographs of disabled protesters crawling up the steps of the U.S. Capitol

27 Theories of circulation in rhetoric and writing studies tend to focus on the spatio-temporal dynamics of communication networks, in reaction to traditional emphases on rhetorical “situations” that theorized rhetoric primarily in relation to isolated events (Bitzer, 1967; Edbauer, 2005). Other disciplines have called for a more expansive critique of the way communication networks—and communication itself—are ideologically constituted. Anthropologist Charles Briggs, for instance, has proposed communicability as a framework for analyzing how communicative processes, including circulation, are “ideologically constructed” in ways that “make some people seem like producers of knowledge, others like translators or disseminators, others like receivers, and some simply out of the game” (2005, p. 274). Such analysis “reveals gaps and fissures […] that structure means of systematically producing marginalization and subordination” (p. 275). In focusing on how persons with disabilities circulate rhetoric in traditional Habermasian public spheres, my analysis leaves aside the issue of how such spheres are constituted—for now. 134 building during the Capitol Crawl. Much like the anti-ACA repeal protests, the Capitol

Crawl was widely credited with helping to garner the extra media attention and public support needed to push the Americans with Disabilities Act (ADA) across the finish line in Congress.28 Similarly, the images of protesters being dragged from Mitch McConnel’s

Washington, D.C. offices twenty-seven years later, captured by press photographers and circulated via media companies like Vox, galvanized the left in opposing Congressional

Republicans’ repeal efforts. In the eyes of observers such as Elyse Wanshel, the exposure and ironic backfire of the state’s attempts to silence disabled voices doomed the anti-

ACA Republicans, compromising their ability to take any kind of moral stance on the public stage.

Today, access to the imagery of protest has increased exponentially, thanks to social media and the spread of smartphones. The videos capturing police brutality against

ADAPT protesters in Columbus and elsewhere were uploaded to Facebook and other social media platforms and viewed thousands of times, all within seconds. Some were livestreamed, enabling synchronous engagement with the rousing events. In theory, this staggering level of access and engagement makes protest a more powerful rhetorical medium today than ever before. The successes of #BlackLivesMatter and #MeToo, measured in terms of national awareness of, and attention to, anti-Black police brutality and sexual violence, have been remarkable. The rhetorical complexities of social media,

28 See Enabling Acts: the Hidden Story of How the Americans with Disabilities Act gave the Largest US

Minority Its Rights (Davis, 2016); “Making Accessible Futures: From the Capitol Crawl to #Cripthevote”

(Ginsburg & Rapp, 2017).

135 particularly of platforms as diverse as Facebook, can complicate protesters’ efforts to

‘send a message,’ however. In the case of the Columbus protest, the cascade of Facebook comments, some of which are quoted above, reveal a range of responses, from those supportive of the protesters to others expressing disdain, even mockery, of the protesters and suspicion regarding their motives. For instance, a number of commenters accused some of the protesters of faking being dumped from their chairs (“flopping”) or deliberately falling forward, evidencing their claims by pointing to moments in the video where protesters appear to fall forward without being pushed. The veracity of such accusations is of less concern to me than their rhetorical purpose, which was to discredit the protesters—ironically enough, by calling into question constructions of them as weak or helpless. Many commenters attempting to show support for the protesters, on the other hand, relied upon harmful disability stereotypes to do so, using pitying, infantilizing, or simply outdated language to express their outrage. (Though it should be noted the majority of supportive commenters did not.)

These responses illustrate some of the rhetorical complications of viral protest imagery vis-à-vis disabled bodies. There are important questions about ethics, agency, and legibility to sort out in instances such as these, where the rhetorical agency of a platform or network appears to exceed—or outpace—the rhetorical agency/velocity of the people whose images that platform circulates. For people who are legibly disabled, such control has major political and historical stakes. The disability rights movement’s famous rallying cry, “Nothing About Us Without Us,” was and continues to be a response to the persistent exclusion of disabled people not only from decision-making processes

136 concerning their wellbeing, but the rhetorical processes of public representation whereby disability, and disabled people, become knowable (Linton, 1998; Wilson & Lewiecki-

Wilson, 2003). In Disability Rhetoric, Jay Dolmage (2014) explicitly aligns rhetoric that objectifies disabled people with the medical model of disability, advocating instead for rhetoric, and scholarship, that “position[s] people with disabilities, in their own claimed bodies, as makers of meaning—rather than as surfaces reflecting the meanings of others, rather than as objects of knowledge” (p. 95). As mediated rhetorical displays, images of disability protest—whether in the form of photographic stills, videos, or digital forms such as vines or gifs—are, in effect, knowledge-making technologies that produce suasive notions of disability and disablement. In the wrong hands—even well-intentioned ones—such technologies can strip rhetorical control from their creators and be used to promote ideas antithetical to their original intent. In digital publics, when protesters put their bodies on the line, they truly do so both physically and rhetorically.

A circulation perspective thusly foregrounds viral protest’s agency, even as it bespeaks its limitations. That is to say, in helping analysts chart the flow and distribution of media across spatio-temporal boundaries, thus revealing the true scope of their reach, circulation theory also reveals how quickly viral media shed old meanings and accrue new ones across contexts, thwarting and exceeding the intents of their creators (or subjects). These issues demonstrate the need for scholarly attention to other, less visible forms of advocacy that operate in conjunction with protest to bring about social and political change. Advocates may prefer to work, indeed be more effective working, outside zones of public circulation, in spaces where control over their messages and

137 images may be more assured. When examining issues such as these, it pays to be mindful, of course, of the tendency in rhetorical studies to discuss protest and deliberation as opposites; a tendency that has led some scholars to use rhetoric that further marginalizes protest tactics and those who practice them. One of the most notable instances of this sort of binarizing is Edward Corbett’s 1969 essay “The Rhetoric of the

Open Hand and the Rhetoric of the Closed Fist,” in which he deployed the contrastive metaphors of the “open hand” and the “closed fist” to critique the tactics of the 1960s

Black Power movement.29 In calling for greater attention to the rhetorical work of professional advocates like Christine—whose rhetoric skews more toward deliberation and compromise than the tactics of organizations such as ADAPT—my purpose is not to suggest that her rhetoric has some kind of intrinsic advantage over protest. Rather, my aim is toward a fuller accounting of the profuse ways in which rhetoric, circulating through disabled bodies (Dolmage, 2014, p. 5), transforms the political landscape. I find that disability’s legibility in deliberative contexts transforms the flow of deliberation, with consequences for both policy and public ideology.

Disability Studies Framework

Compared to disability memoir, autieethnography, and other first-person self- advocacy discourses, third-person observational analyses are rather limited in their capacity to reveal the intimate details of rhetoric’s relation to disabled embodiment.

29 I am grateful to Karma Chavez (2018) for focalizing some of the problems with Corbett’s essay in her talk, “The Rhetoric of Sanctuary, the Logic of the State.”

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Although I observed Christine practice and perform rhetoric in several types of situations,

I cannot be sure how these performances were shaped by her dis/ability, having no phenomenological experience of what it’s like to live with I/DD myself. Nor did I actively seek qualitative data that might illuminate the relationship. Like in my interviews with the STEP students in Chapter 2, I did not ask Christine to describe her disability or how it affects her communication. She did disclose that, due to low vision, she cannot drive, and she must use a large print keyboard to type. As for her mental diagnoses, whatever those might be, we did not discuss them. My rationale for not seeking out this information was the same for Christine as it was for the students: I did not want the interview to seem like it was ‘about’ her disability.

How, then, to anchor my observations of Christine’s rhetoric in a disabled phenomenology? This is not an idle question, but a methodological one; to understand disabled people’s unique agency as makers of meaning requires an understanding of how rhetoric is anchored in the body. In Disability Theory, disabled scholar Tobin Siebers

(2008) describes how identity politics, all politics really, are grounded in the body.

Writing against the social constructivist tendency to associate “situated knowledge” with a pure, dematerialized perspective, Siebers argues that situated knowledge “adheres in embodiment. The disposition of the body determines perspectives, but it also spices these perspectives with phenomenological knowledge—lifeworld experience—that affects the interpretation of perspective” (p. 23). Siebers refers to this idea as the theory of complex embodiment: the notion that perspective is irreducible to pure representation; that it arises from the materiality of the body.

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Siebers’ theory of complex embodiment offers conceptual grounding for my assumption that Christine Brown’s rhetoric—and the rhetoric of other professional self- advocates—arises directly from her “lifeworld experience.” Our bodies, as nodes in the vast networks of humans, texts, spaces, and objects through which rhetoric circulates, transform rhetoric as it passes through us. Rhetors who identify with, or are identified with, a minority group (or minority groups) by virtue of their embodiment are able to mount critiques born of their bodies’ marginalization within the space of the network.

Often, particularly in the case of people with disabilities, this marginalization is the result, partially if not entirely, of histories of forced segregation. Disabled lifeworlds thus become sources of untold critical (rhetorical) power.

In Building Access: Universal Design and the Politics of Disability, feminist disability studies scholar Aimi Hamraie (2017) outlines some of the ways this critical power literally (that is, materially) changes the world. Drawing heavily from Foucault,

Hamraie conceptualizes the dominant professional discourses, and methods, of making access as material-discursive formations. They (Hamraie) refer to these formations as

“access-knowledge,” “a new regime of legibility and illegibility” (p. 30) that took shape in the twentieth century as predominantly (though not exclusively) nondisabled product designers, architects, and urban planners sought to develop new models of ‘the user’ to accommodate persons with disabilities and others who did not fit existing design templates. While heralded as a dramatic break from tradition, this new regime, Hamraie points out, made some disabled users—namely, those who were white, male, and physically disabled—more legible to design than others. As a result, products and

140 buildings designed to accommodate wheelchair users, visually impaired users, and a few other disabled ‘types’ could be certified accessible by the prevailing professional associations and government entities, while remaining quite inaccessible to many disabled individuals, such as those with sensory and/or cognitive impairments. As the century progressed and the disability rights movement grew in both numbers and influence, more disabled ‘types’ would gradually be included—made legible—under the current regime, resulting in new standards for accessibility. And yet, Hamraie argues, the influence of the older user models continued to be felt, particularly in the emphasis placed on access as a method for rehabilitating disabled workers. By thusly

“disentangl[ing] the aspiration for a more accessible world from the ideologies and values used to promote it,” Hamraie’s book illuminates how public knowledge of access—what it is, how it’s achieved, and when we know we’ve achieved it—is shaped by the powerful

(p. 7).

Their book also uncovers the ways disabled individuals and communities have pushed back against dominant modernist conceptions of access, in particular against liberal narratives proclaiming that accessibility policies benefit (or ought to benefit) everyone. Hamraie describes, for instance, how in late 1960s Berkeley, California, rumors of ‘guerilla curb-cutting’ by disabled activists and their allies—who were reported to have taken to the streets by night, wielding sledgehammers to bust up curbs— sparked public debate and civic action leading to the installation of professional curb cuts. These stories were subsequently memorialized and incorporated into larger liberal progress narratives proclaiming the curb cut as a gift to all. In an effort to recover their

141 anti-assimilationist bent, Hamraie conceives of practices such as guerilla curb-cutting as forms of “crip technoscience:” “experimental practices of knowing-making” that

“challenge[ ] hierarchies and power relations within the field of access-knowledge by shifting expertise to those with lived experiences of disability and away from the outside experts often designing in their name” (p. 99). Through crip technoscience, disabled activists weave counter-narratives to dominant notions of access that seek to erase or ameliorate the presence of disability by normalizing access icons like the curb cut.

Hamraie’s work provides scholars of rhetoric and writing a fresh way of understanding the power of disabled peoples’ rhetoric and its impact on the material world. The notion of critical access-knowledge in particular is useful for understanding how professional self-advocates transform policy by working within the system. In the world of policy as in the world of design, the deliberations that ultimately inform access- knowledge frequently occur without the input of people with disabilities themselves.

Since the 1970s, federal laws mandating that public buildings be accessible to all citizens have helped increase access to statehouses, city halls, and legislative office buildings, enabling disabled individuals to meet with lawmakers and stage peaceful protests. Under twentieth century regimes of access-knowledge, the passage and execution of such laws would appear to fulfill the public’s responsibility toward making democratic deliberation accessible. If disabled people can access the statehouse galleries, the logic goes, they can participate in the political process. Many disability rhetoric scholars, such as Brenda

Brueggemann (1999), Cynthia Lewiecki-Wilson (2003), and Margaret Price (2011), have pointed out that such physical access does not go nearly far enough toward enabling

142 meaningful political participation for people with mental disabilities. Policies, like spaces, might appear open, accessible, and fair on the surface, when in fact they are not.

My analysis of Christine Brown’s rhetoric attempts to demonstrate how input from legibly disabled individuals matters to policy. Employing critical practices of knowing-making derived from their lived experience, professional self-advocates like

Christine transform the language of policy from the inside out, shaping how policymakers conceptualize various elements of existing rules and proposed legislation.

They use persuasive tactics, such as leveraging their ethos as disabled persons, to build affective coalitions among government actors. And they model accessible discourse, through skills such as plain language use, that makes policy as a whole more accessible to people with I/DD.

Methods

Data collection and analysis

Using grounded ethnographic methods, I gathered and analyzed a variety of artifacts related to Christine’s advocacy work for this study. Between February 2017 and

November 2018, I conducted one formal interview and six observations. My primary interest was in Christine Brown’s real-time rhetorical strategies and tactics, along with her audiences’ reactions to them. Conducting observations enabled me to triangulate data gathered through the interview process. I coded my notes and transcripts using the same grounded procedures described in Chapters 2 and 3, with some minor changes to the

143 dimensionalization phase.30 I also examined policy documents, marketing/outreach materials, and other texts deployed by participants, whether verbally or materially.

Though many documents proved important to the deliberative process, I did not subject them to a full analysis. Table 4 provides a chronological summary of the interviews and observations and assigns each data source a code (e.g., [I] for interview) for ease of reference.

I analyzed the data as I collected it, looking primarily at discourse patterns and for patterns in Christine’s rhetoric (types of arguments used, gestures and other delivery tactics, etc.). In both the observations and the interviews, my units of analysis included single utterances and longer conversations. (For my purposes, it was not necessary to distinguish between the two.)

Broadly, the events I observed can be divided into three types: small meetings with policymakers involving fewer than 10 participants; larger group meetings with policymakers involving 15-30 participants; and large public meetings involving 50 or more participants. In my notes, I attempted to document both discourse patterns and what was actually said. Due to a sensitivity to participants’ privacy, I did not video- or audio- record my observations, so my notes do not fully capture the content of the meetings. I have assigned all named participants other than Christine pseudonyms. Those not named have been assigned labels such as “Rep. 1.”

30 Due to time constraints, I did not use the exact same dimensionalization procedures that I used in Chapters 2 and 3. Specifically, I did not spend as much time iteratively lumping and splitting code categories—grouping and differentiating codes based on similarities/differences. Grounded theorists place varying levels of importance on this phase of analysis. 144

Table 4 Observational Data Sources

Event Time/place/length Purpose

# of Participants Meeting with OH state Rep. 2’s Wednesday, February 1st, Meeting to educate Rep. about aide [R2a] 2017, 12:30 pm: the Riffe the Ohio Statewide Consortium Center, Columbus, OH (OSC) 5 ~30 min. Meeting with OH state Rep. 2 Tuesday, February 21st, 2017, Meeting to educate Rep. about [R2b] 3 pm: the Riffe Center, OSC Columbus, OH 6 ~30 min. Meeting with administrator from Wednesday, March 15th, 2017, Educating admin. on behalf of Ohio Department of Higher 9:00 am: 25 S. Front St., OSC Education [OHE] Columbus, OH

5 ~30 min. Self-Advocate Advisory Council Friday, April 7th, 2017, 10:30 Bringing issues before of the Franklin County Board of am: Bixby Living Skills legislators; giving individuals Developmental Disabilities: Center, Groveport, OH with I/DD, other members of the Legislative Advocacy Day public opportunity to comment; [LAD] ~1.5 hrs. sharing research and policy ideas; recognizing past year’s >100 accomplishments Interview with Christine Brown Thursday, October 19th, 2017: Semi-formal interview to learn [I] Ross Heart Hospital cafeteria, more about Christine’s self- Columbus, OH advocacy work: what it involves, 2 how she got started, how she ~1 hr. thinks about communication and rhetorical strategy Meeting with several state Tuesday, April 10th, 2018, Updating legislators on OSC’s legislators organized by Rep. 1 11:00 am: the Riffe Center, employment data tracking [OLM] Columbus, OH efforts; discussing different college credit funding options 28 ~1 hr. for students with I/DD Ohio Self-Determination Wednesday, August 8th, 2018, Introducing self-advocates and Association (OSDA) Central 10:30 am: the Northeast their allies to new remote Region Meeting: Mini School, Gahanna, Ohio support technologies; facilitating Technology Conference [CRM] discussion of the technologies’ ~1 hr. affordances and limitations ~50

145

Before proceeding to the analysis, I will briefly summarize our interview, partly to orient the reader to the alphabet soup of agencies, organizations, and programs I will be referring to throughout the rest of the chapter (see Appendix E for a glossary of acronyms). In the first part of the interview, I asked Christine to tell me more about her self-advocacy work. We discussed her involvement with the Ohio Self-Determination

Association (OSDA), a non-profit organization of self-advocates who seek to promote the wellbeing and self-determination of all Ohioans with I/DD through trainings, advocacy, and leadership (OSDA, 2017). One of the OSDA’s main activities is a training program called Project STIR, short for “Steps Toward Independence and Responsibility,” in which self-advocates such as Christine train others with I/DD how to ‘speak up’ for their rights

(aspects of Project STIR’s teaching philosophy are discussed in Chapters 1 and 2). Next, we talked about Christine’s job duties as a clinical research assistant and member of the

Consumer Advisory Board for the John Dewey Research Center; and her legislative advocacy work on behalf of Ohio’s Statewide Consortium (OSC). The John Dewey

Research Center is an academic research center whose mission is to “improve the lives of people with developmental disabilities and their families” through “develop[ing] and provid[ing] the highest quality interdisciplinary care, education, and research.” It is highly regarded nationally as a leader in the I/DD research field. The OSC is a consortium of Ohio-based colleges and universities that run designated TPSIDs

(Transition and Postsecondary Programs for Students with Intellectual Disability) like

STEP. Collectively, these institutions work together to educate policymakers on the

146 transition needs of students with I/DD and propose policies on issues such as college affordability, transportation, and workforce development.

In the second part of the interview, I asked Christine how she got started doing self-advocacy work. We talked about some of her early accomplishments before circling back to the OSC’s legislative advocacy agenda, specifically its efforts to increase employment opportunities for graduates of TPSIDs like STEP. Next, I asked Christine to describe a typical advocacy meeting and to tell me more about the OSDA meetings.

Lastly, we talked about how Christine uses reading, writing, and digital technology in her work.

Findings & Analysis

The events in Table 4 represent but a small slice of the total number of meetings, phone calls, and face-to-face conversations I took part in pursuant to this research. It is an even smaller slice of the total sum of advocacy events that went into the OSC’s cumulative efforts to educate31 state policymakers in 2017 and 2018. While my selection of such a limited sample of events can provide only a partial reconstruction of Christine’s rhetoric, there are coherent through-lines between these data points, themes that reveal a larger pattern of rhetorical agency. In this section, I describe the relationships among

31 I use the term ‘educate’ in this context somewhat loosely. Advocacy groups sometimes refer to their work as educational to avoid having to deal with lobbying regulations. In one of the meetings with lawmakers I observed, an advocate for the OSC made a point to stress that the meeting was “just an update,” implying an informational or educational agenda when in reality the purpose of the meeting was political. Everyone present seemed to understand the subtext of this remark. 147

Christine’s ethos as a person with a disability, her skills as a professional self-advocate, and her rhetorical agency, based on my observations of moments when her rhetorical interventions appeared to have an impact on policy deliberations.

Portrait of a Professional Self-Advocate

As a professional self-advocate, Christine’s job is to speak to power on behalf of

Ohioans with I/DD. In practice, this involves emailing, calling, and meeting face-to-face with parents and families, government officials, business leaders, service providers, academic researchers, and other people in the I/DD world. Christine spends a lot of time on her computer and her phone, updating people in her extensive network of contacts on the latest developments in the OSC’s advocacy efforts. As the study progressed, I became one of these contacts, receiving emails and the occasional phone call to update me on what was happening. Based on recurrent patterns in the analysis, I identified 13 skills as important to Christine’s work.32

• Accessible language

• Assertiveness

• Responsiveness

• Persistence

• Seeing the big picture

32 Calling something a skill is itself a kind of judgment. The notion of literacy skills, for instance, has been critiqued by Brian Street (1984) for its implication that literacy can be decontextualized. A similar critique could be made concerning the notion of a self-advocacy skill.

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• Tech literacy

• Research

• Hedging

• Ritual attunement

• Networking

• Redefining concepts

• Problematizing

• Moral discernment

Table 5 provides a definition, sample codes, and an example from the data for each skill. This breakdown of skills provides an idea of the kinds of competencies professional self-advocates may need to be successful. First, there are verbal skills.

Christine is very good at unraveling bureaucratic language; at using accessible terms to summarize complex ideas. The example in Table 5—in which Christine explains to me how Medicaid waivers work—is but one instance I observed of her applying her explanatory skills to elucidate a difficult concept. These plain language skills are vitally important: they enable her to keep the people for whom she advocates, many of whom do not have Christine’s cognitive processing abilities, informed about policies that directly impact their lives. Related to these plain language skills, I observed that Christine is very good at distilling concepts; at helping those she is talking to see the big picture of whatever policy or issue is being discussed. And she excels at drawing from her lived experience to redefine issues from a person with disability’s perspective (more on this later).

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Table 5 Professional Self-Advocacy Skills: Codes and Definitions

SA Skill Sample Codes Example from Data Accessible language Cognitive accessibility; inclusive [I] Christine explains Medicaid rhetoric; explaining to me waivers to Sean: Definition: Translating specialized discourse into Sean: So you get your healthcare plain language through Medicaid…

Christine: That’s Medicaid on that side. Home and community-based waivers are like home aid, personal care, transportation services… Assertiveness Asking direct questions; declaring [OHE] Christine to Higher Ed information to be misleading Chancellor: What do you think Definition: Taking the lead about using OCOG to get our in the interaction; letting students more funding? others know what one wants without being overly forceful Responsiveness Listening; giving a thoughtful See example for “Accessible answer Language” Definition: Being a good listener

Persistence Advocacy = persistence [I] Christine: [I]t takes a long time, but… the thing is… I don’t stop till Definition: Persisting at a I get it achieved. goal in the face of adversity Seeing the big picture Vision; explaining problem to me, [I] Christine: [M]y big topic helping me picture it; what’s being today… is trying to teach the Definition: Helping others achieved? legislators that college is such the see the larger stakes of a hugest integrated setting… You problem or question can’t put anything above college. And right now, in the state of Ohio, it’s a little tough to get everyone to have equal… funding for college…

Continued

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Table 5 Continued

SA Skill Sample Codes Example from Data Tech literacy Professional writing’ designing [I] Christine explains how she uses information Facebook for research and Definition: Working deftly ecologies/environments; using communication: in and across Facebook to stay up to date on communication federal policy; texting lawmakers Christine: [S]ometimes I can be on platforms/technologies, as Facebook for like two hours… per the rhetorical [looking up] stuff. Especially situation’s demands because all these changes up at the U.S. level [?] that are happening…

Sean: What kinds of stuff do you post?

Christine: Some things about my status, sometimes about… what I’ve found on things. Like hearing whether they’re saying to cut Medicaid…

Research Research; following leads; talking [I] Sean: Where do you get the about importance of quantitative information? Definition: Knowing how data to find and use good Christine: I have a lot of… information resources. We’ll [?] go onto DODD, OOD… there’s also a website… Job Accommodations Network, JAN… there’s like over 150 diagnostics on that page…

Hedging What counts as evidence?; setting [I] Christine tells Sean about a new realistic expectations funding opportunity she is Definition: Admitting to evaluating: gaps in one’s knowledge Christine: [T]he other thing… that I’m checking into—I don’t know yet what it’s gonna turn out as—but there’s this new scholarship… and, it’s almost like it’ll really pay all the tuition and books, not just room and board… But it’s not… it’s not seeming to cover all for [?] [STEP students] at this minute. We’re checking into it, okay?

Continued

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Table 5 Continued

SA Skill Sample Codes Example from Data Ritual attunement Commending past initiatives; [SA] In opening address to the insinuation; epideictic; euphemism audience at the Legislative Definition: Adapting to the Advocacy Day, Christine ritualistic aspects of a commemorates the anniversary of rhetorical situation Gov. John Kasich’s Employment First Act.

[OHL] Christine opens meeting with a thank-you to the legislators for passing the OCOG amendment. Networking Forging connections; keeping [OHC] The Chancellor offers to people in the loop; making calls; “make a recommendation” that will Definition: Making and name dropping help students with I/DD get Pell leveraging connections in grants. In reply, Christine mentions pursuit of mutual interests someone in Grove City who has made a similar recommendation. Redefining concepts Redefining things; helping others [I] Christine redefines what counts realize there’s a different way of as an in-demand career: Definition: Synthesizing a thinking about the issues variety of information Christine: They honestly… Direct (from public data, lived Support Professionals? They don’t experience, etc.) to change even have that on the in-demand the way others view a careers on Ohio Means Jobs. concept That’s… a humongous in-demand career… because they are short- handed on staff. Problematizing Redefining things; finding [I] Christine explains to Sean inconsistencies in the rules; what’s wrong with the way Ohio Definition: Identifying declaring information to be communicates the credentials problems based on misleading needed for certain jobs: evidence Christine: [W]e’re talking with Ohio Means Jobs… that website is way out of date… on the Social/Human Services [page]… they only say “require high school diploma.” That’s not correct. You need to have, uh, a certificate… you have to go through all these seminars in the Home Aid [?] and Personal Care Staff… Moral discernment Appeal to fairness; outrage at [OHL] Christine explains to the incompetence; using rhetorical legislators that Ohio is underserved Definition: Making questions to get lawmakers to compared to other states. assertions/articulating agree that something is judgments about a thing’s unfair/unjust moral qualities 152

In addition to her verbal skills, Christine is a savvy communicator. She can keep a meeting on track and communicate forcefully and assertively when necessary. Yet she’s also a good, responsive listener. She is adept at navigating the formalities of a rhetorical situation (a skill I’ve labeled, somewhat clumsily, “ritual attunement”); at speaking at appointed times, yet breaking in when she feels she needs to make a point. These communication skills are no doubt related to Christine’s impressive network of contacts, which she uses to spread ideas and build alliances around areas of shared concern. When her communication skills do not immediately translate into the results she wants,

Christine is unflinchingly persistent (As she told me, “I don’t stop till I get it achieved”

(I).) On multiple occasions, I heard others praise Christine for her persistence and credit it as the reason for a particular issue making it onto the legislators’ agenda, or for a rule change getting passed.

Thirdly, Christine relies on strong research skills, and responsible methods of knowledge-representing, to back up her arguments with credible information. She told me about many of the websites she uses to find government statistics and other useful data, which she shares with the OSC legislative advocacy team to help them build their arguments. She’s careful not to misinterpret or misrepresent the data she collects, strategically hedging her claims to help her audience manage the new information she presents. Relying on sound knowledge of how social media works (tech literacy), she leverages her findings by sharing them on Twitter and Facebook, where she regularly

153 engages in conversations about national policy issues. Christine sees her role in these spaces as an advocate for people with I/DD who are not active on social media:

Sean: What kinds of stuff do you post?

Christine: Some things about my status, sometimes about… what I’ve found out on things. Like

hearing whether they’re [the government] saying to cut Medicaid… and, uh, pointing that out.

Some people write back, like some of the legislative people, and say ‘that’s not gonna happen.’

Well, ‘okay, maybe it won’t but it’s a fear people have…’ is what I reply back… Because they just

don’t know what’s gonna happen. (I)

Christine’s role in these online encounters, as she presents it, is to represent the concerns of the disability community. On Twitter and Facebook, where opinions are identified with individual users, claims or conjectures can get brushed aside (‘that’s not gonna happen’) on the grounds that their author hasn’t shared enough evidence. Christine’s response is a hedge (‘maybe it won’t, but it’s a fear people have’) that identifies her conjecture, and its underlying concern, with the disability community. This shifts the focus of the debate from supposedly objective speculation (will it or won’t it happen?) to the debate’s affective and material impact on a vulnerable population. To be an effective advocate, Christine picks spots in her network where she can impactfully circulate facts and feelings.

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Agential Episodes

Though I have picked them out and presented them one by one, in practice these skills overlap and interpenetrate. In a given rhetorical situation, Christine might rely on several simultaneously or none—the list is hardly exhaustive. These are the skills that stood out to me because of the frequency with which Christine uses them and their emergence in key agential moments, or episodes, where Christine’s rhetoric appears to make a significant difference. For the purposes of this analysis, I worked from a basic understanding of rhetorical agency as rhetorical mattering. That is, when considering the impact of an utterance or action, I asked: if Christine were not ‘at the table,’ how would the outcome have been different? How do the data help us answer this question? To be sure, inferring such effects from primarily observational data requires a certain amount of conjecture. Siebers’ (2008) theory of complex embodiment and Hamraie’s (2017) notion of critical access-knowledge give us a framework for acknowledging how the rhetoric of disabled activists, “spiced” with lifeworld experience of disability, picks up critical (and world-changing) valences vis-à-vis dominant discourses and institutions. While a nondisabled person might make the same statements Christine makes, Christine’s performance of those statements is fully embodied, mentally and physically; it is through that performance that Christine’s unique rhetorical agency manifests. In traditional rhetorical terms, then, understanding Christine’s rhetorical agency requires recognition of the power of her ethos as a person with lived experience of I/DD. Taking the power of this ethos for granted, then, was one assumption I have made in attempting to unravel

Christine’s rhetorical agency from the multitude of agential micro-events constituting 155 each ‘macro-event’ I observed. While thusly acknowledging the power of her ethos, I was mindful not to overlook the agency of other aspects of her performance: logical appeal, timing (kairos), silence, and so on.

The ‘episodes’ I analyze below were events where Christine applied her self- advocacy skills toward particular goals, using various channels of communication (one- on-one emails, large group discussion, meetings, etc.). Table 6 describes each episode, along with its outcome. The smallest of these events was an interaction between two people, in which Christine made an editorial suggestion to another staff person at the

John Dewey Center. The largest was a big, townhall-style meeting where close to 100 people were present. In addition to empirical evidence of each episode’s outcome, I consider my own impressions of, and reactions to, Christine’s words as evidence of her affect. Throughout the research process, I made a point to study my impressions of how

Christine had shaped my thinking about college access and other relevant issues. How had I been influenced by her rhetorical strategies and tactics, such as her approach to plain language (described below)? These phenomenological indicators, coupled with the observational data, offer a valid, if subjective, trace of the rhetorical outcomes of these events.

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Table 6 Relation of Professional Self-Advocacy Skills to Rhetorical Agency:

Applications and Outcomes

SA Skill Application Channel Outcome Episode 1: Accessible Editing Next Chapter Book Emails; other Book Club materials language; assertiveness; Club materials and John forms of internal and John Dewey problematizing Dewey Center website; organizational website more reporting edits to Book communication cognitively accessible; Club director [I] approaches to cognitive accessibility spread within professional network Episode 2: Networking; 1) Organizing the 2017 Event hosting, co- Advocates and accessible language; Legislative Advocacy Day moderating large policymakers at the assertiveness; 2) Redirecting Q&A toward group discussion 2017 Legislative problematizing; a discussion of accessible Advocacy Day leave responsiveness; ritual parking [LAD] with a more nuanced attunement understanding of relationship between policy and physical access barriers Episode 3: Networking; Facilitating group Event hosting, Self-advocates able to accessible language; discussion at Ohio Self- facilitating group draw connections responsiveness; seeing Determination Association discussion between assistive the big picture; tech Central Region Meeting technologies they literacy; redefining about new assistive already use and home concepts technologies [CRM] health monitoring technologies; make more informed judgments on whether to adopt the new technologies Episode 4: Networking; 1) Explaining to citizens Chairing a meeting Citizens and accessible language; problems with how Ohio policymakers have a assertiveness; funds job training for in- new way of thinking persistence; seeing the demand careers [I] about in-demand jobs, big picture; redefining 2) Informing policymakers the value of programs concepts; of these problems [I] like STEP, and the problematizing; moral 3) Bringing these concerns social contributions of discernment; tech to a policy meeting to people with I/DD; literacy; research empower alternative subaltern forms of evidence [OLM] evidence given more clout

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Episode 1 – Spreading access through workplace interactions

Christine explained to me that one of her duties as a Clinical Research Consultant at the John Dewey Center is to regularly check John Dewey’s webpages, forms, and other web/print documents to ensure they are cognitively accessible. Cognitive accessibility includes plain language use and, in digital environments, attention to issues such as the user’s capacity for attention (Does a webpage viewing session ‘time out’ suddenly, breaking the user’s concentration?) and tolerance for sensory stimulation (Are there text or media elements that behave in a visually or cognitively disruptive way?) (W3C, 2015).

Per autistic scholar and activist Ibby Grace (2013), cognitive accessibility is a social justice issue. Grace frames cognitive accessibility explicitly in terms of self-advocacy, writing that plain language is “needed to allow the widest variety of people with disabilities to participate in conversations about themselves.”

Christine’s familiarity with cognitive access barriers such as those described by

W3C33—a familiarity born both of her own experience and the experiences of her disabled friends, associates, and colleagues—makes her an expert on plain language. This in turn renders her judgments about which words are accessible (and which are not) highly consequential. This was evident in an episode Christine described to me during our interview. The John Dewey Center runs a literacy program called the Next Chapter

Book Club designed specifically for students with I/DD. Members of the club read books and meet in public places like coffee shops to discuss them. Upon reviewing a handout

33 W3C, the Worldwide Web Consortium, is an international nonprofit organization that provides research- based guidance to web developers and organizations, including accessibility standards.

158 created by Book Club staff, Christine noticed the document’s authors had used the word

“collaborate” in describing certain club member activities. She suggested they used the phrase “get together” instead. As she explained to me, “I understand some people could understand it,” but “some lower functioning people may not” (I).

In addition to her accessible language skills, this episode illustrates the impact of

Christine’s assertiveness—specifically, her ability to problematize. Based on my own interactions with Christine, I can only assume she communicated her suggestions to the

Book Club staff in a respectful, firm manner and that she clearly explained the reasoning behind her claims. As discussed in Ch. 2, this ability to rationally problematize as a means of persuading others to address a perceived issue is an institutionally-sanctioned method of achieving recognition of one’s needs, a skill often taken for granted by individuals for whom reasoning comes easily. In the context of Christine’s work, such skills are highly effective. Even when they do not achieve the intended result ‘on the page’—say the Book Club staff decided that “get together” was ineffective as a synonym for “collaborate,” and went with another word or phrase instead—Christine’s applications of these skills affect how other rhetors within Christine’s personal and professional network(s) think about accessible language (I, for one, had never considered that

“collaborate” might be a challenging word for some adult readers). This in turn has a distributed impact on the larger discourse of the institution, spreading Christine’s approaches to cognitive accessibility beyond the realm of the John Dewey Center’s public communication efforts.

Episode 2 – Finding footholds in large discussions for subordinated interests

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In addition to her work for John Dewey, Christine does significant volunteer work for OSDA. She is a lead trainer for Project STIR and a leader of the OSDA Central

Region, one of five regions that includes six Central Ohio counties. Every other year,

OSDSA partners with the Self-Advocate Advisory Council of the Franklin Board of

Developmental Disabilities to sponsor a Legislative Advocacy Day, an event that attracts dozens of self-advocates, family members, support staff, and other allies from around the state. The 2017 Legislative Advocacy Day drew over 100 audience members. In essence a town hall, this biennial gathering is an opportunity for people with disabilities of all

‘functioning levels’ to speak directly to policymakers. Several state legislators were present at the 2017 meeting, including a few who would later attend the ‘Ohio Legislator

Meeting’ (OLM) on April 10, 2018 (see Episode 4). As I learned, Christine was the person largely responsible for getting them there.

Christine played a key role in organizing 2017’s Legislative Advocacy Day, from its conception to day-of logistics. At every meeting I observed leading up to the event,

Christine would make a point of inviting whomever it was we were meeting with to come. If a legislator or high level administrator couldn’t go, she would invite a member of their staff instead (R1a, R1b, OHE). Her strategy was to pull in as many potential stakeholders as possible, whether they be an important official or merely a volunteer such as myself. She was careful to play up the event, too, stressing its importance (As she told a representative from the Department of Higher Education, “It’s gonna be big” (OHE).).

The plan for the event was as follows. Audience members would come in and find their seats. At 10:30 a.m., the Superintendent/CEO of the Franklin County Board of

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Developmental Disabilities (hereafter referred to as “The Super”), who acted as the event’s unofficial emcee, would welcome everybody and introduce the legislators. After that, Christine would provide an overview of topics to be discussed (budget, employment, college tuition, Medicaid cards), before launching into a large group discussion.

Volunteers would distribute comment cards and mic runners would fan out into the audience. Audience members would then have an opportunity to ask questions or raise additional topics for discussion. At 11:45 a.m., the Super would wrap up the discussion, and lunch would be served.

Despite her prominent role in organizing the event (she was listed on the program as the “event coordinator”), Christine’s role in the large group discussion was slightly more muted. This had partly to do with the rhetorical situation and the physical space the event took place in. The room, a large, multipurpose gymnasium, was arranged with the legislators and the moderators (including Christine) seated on stage and the audience seated at tables that stretched to the very back of the gym. The size of the room, and the number of attendees, made for an ambiguous rhetorical situation, wherein it was not always clear who was being addressed. While the event’s purpose implied that the legislators would be answering questions, the seating arrangement was such that questions directed toward where the legislators were seated on-stage could be interpreted as being directed toward the moderators. In practice, this absolved the legislators of any normative obligation to respond. This spatial ambiguity was complicated by the neurodiversity of the attendees, who oriented toward the event in divergent ways. Some asked personal questions, or questions that were slightly off-topic. Others spoke softly,

161 haltingly, or ‘incoherently,’ which led aids or nearby listeners to speak on their behalf. It was thus not always clear what the question had been, or to whom it was aimed.

Presumably to keep the discussion on track (and on time), the Super took it upon himself to be the de facto respondent. (As it turned out, the legislators hardly spoke at all, limiting their contributions to ceremonial rhetoric (thanking their hosts, acknowledging Franklin

County Board of DD’s public service) and the occasional summative comment.)

With the Super acting as filter, Christine played a less vocal role in the discussion and was quiet for large stretches. Nevertheless, she influenced the discussion in subtle ways. In particular, I observed that she strategically interjected now and again to amplify certain questions or topics. This was most evident about midway through the Q&A, shortly after an audience member made a remark about handicap parking. The Super responded to the remark, but not in a way that advanced it as a topic for further discussion. Quickly, the discussion drifted to other matters, as an influential (non- intellectually disabled) audience member raised their hand to ask a question about college funding. They asked why, when 20 states across the country have allocated funds to college students with I/DD, the Ohio College Opportunities Grant had not. Based on previous observations of this individual’s prominent role in the John Dewey Center’s advocacy efforts, I inferred that their question was mostly performative—that their aim was to draw attention to the college funding issue, not necessarily receive a precise answer. As it were, theirs was one of the few questions to receive a direct response from a legislator (Rep 1), who replied that it sounded like a budget amendment issue and that they would look into it. Christine and another John Dewey staff member made follow up

162 comments, sharing information they’d learned in their meeting at the Department of

Higher Education (OHE). Christine then changed course, redirecting the discussion back to accessible parking by pointing out that not all so-called accessible parking spaces in

Central Ohio are accessible to vehicles with wheelchair lifts, which was a violation of the

ADA. While the next audience member to speak asked a question about affordable medicine, thus moving the discussion in a new direction, Christine’s interjection kept the parking topic in circulation (it was one of the few topics to come up more than once).

Other participants would key in on the topic, expressing frustration at people who fake disability parking, asking if using a relative’s disability permit is wrong, and raising concerns about the lack of accessible parking at the airport. As a result, Rep 1, in his second comment, replied that he too was concerned about the parking issue.

By applying her moderating skills—assertiveness, responsiveness, ‘ritual attunement’—Christine helped keep the conversation at the 2017 Legislative Advocacy

Day swirling in a purposeful direction. As a result, the advocates and policymakers who attended were able to leave with (a) a more nuanced understanding of the relationship between policy and physical access barriers such as parking, and (b) the parking issue’s importance within the I/DD community. Moreover, by applying her networking skills in advance, Christine was able to ensure a wider distribution (circulation) for these ideas.

Episode 3 – Framing issues for the I/DD community

Another of Christine’s volunteer duties for the OSDA is to facilitate meetings for the Central Region. These meetings, which happen several times a year, are opportunities for self-advocates from around Central Ohio to gather and discuss news, issues, and

163 policy updates. On April 8, 2018, the OSDA Central Region held a meeting to discuss newly available home health monitoring/remote support technologies, along with some new policies that were being developed to support, and promote, their use. The meeting’s organizers, Christine among them, promoted the meeting as a “Mini Technology

Conference.” A member of the Ohio Department of Developmental Disabilities (DoDD) was invited to give a presentation on remote support and DoDD’s county-specific action plans for rolling out the new technology to consumers. This was followed by a second presentation, in which a researcher from the John Dewey Center shared findings from an attitudinal study measuring, among other things, consumer perceptions of the new technologies. A third and final presentation followed, featuring a self-advocate who talked about using the Amazon voice-command app Alexa to communicate with her remote support team. This was followed by a brief group discussion. Afterwards,

Christine adjourned the meeting for lunch and invited participants to pick up brochures or talk to the small number of remote support vendors who were invited to the meeting to promote their products.

While the tone of the meeting was generally positive toward remote support in light of statewide staffing shortages (more below), the meeting’s organizers were careful to highlight the technology’s benefits as well as its potential hazards. Several members of the audience raised questions about the affordability of the new technologies. Others asked if DoDD’s shift in emphasis toward remote support would entail reductions in on- site support staff. The second presenter shared data on both positive and negative

164 consumer perceptions of remote support, addressing, among other things, privacy concerns.

In addition to chairing the meeting, Christine led the group discussion at its conclusion. It appeared her primary objective was to engage with the self-advocates, to solicit their feedback and invite them into the conversation. Many of the audience members who had spoken up to that point had been family members and support staff. To get more self-advocates to participate, Christine drew on the accessible language skills she’d honed through her work as a Project STIR trainer. She also exercised her talent for helping others see the big picture of any given issue. This talent was on full display during my interview with Christine, when she helped me understand, for instance, that expanding accessible transit services to rural areas, apart from its immediate benefits, boosts the morale of the self-advocacy movement by “showing that people are… getting help to be in an integrative environment.” At another moment in our interview, Christine used a line I would hear her repeat often: “college is… the hugest integrated setting.”

This simple distillation of the STEP program’s underlying philosophy affected how I now understand not only the OSC’s advocacy work, but the purpose, and potential, of college.

One of the main objectives of OSDA regional meetings is to give self-advocates, who possess a wide range of cognitive and intellectual ability level, an opportunity to speak up. While not many spoke in response to Christine’s questions, a couple did.

Christine asked the group, “Who here in this room uses technology of any sort? Raise your hand.” This elicited several hand raises and a couple of verbal responses. One individual shared that they ‘make the screen larger’ on their device to help their vision.

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Another shared that they use their iPhone to read, because it lets them enlarge the text of whatever they’re looking at. Christine’s intervention in the conversation was both to ensure all the self-advocates could understand what was being talked about, and to frame remote support as something familiar, as another form of assistive technology, not substantively different from the accessibility features on an iPhone. By thusly reframing or redefining the remote support issue, and through her responsiveness to her audience’s access needs, Christine helped her audience in this moment see remote support in a different light, normalizing a technology that, despite its risks, could be of real and immediate help to many who were present.

Episode 4 – Critiquing dominant discourses to empower other forms of evidence

On April 10th, 2018, several advocates affiliated with STEP and the OSC held a meeting with state policymakers to provide an update on the success of their programs. In particular, they wanted to tell the policymakers—a group that included legislators, their aides, and representatives from agencies such as the Ohio Department of Higher

Education and the Department of Developmental Disabilities—about the Consortium’s efforts to collect employment data on students enrolled in programs like STEP. While they were careful to frame the meeting as an “update,” both they and the policymakers understood that the meeting had an underlying purpose, which was to interest the policymakers in various options for increasing TPSID funding. One of these options was to pass legislation based on Florida SB 672, a law passed by the Florida state legislature in 2016. The ‘Florida bill,’ as it was referred to during the meeting, created funding for

TPSIDs and a scholarship.

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At the time of my study, the OSC’s efforts to get an Ohio version of the Florida bill started had encountered resistance. There were both practical and ideological obstacles to overcome. First, the policymakers they needed to convince were very hesitant to entertain policy proposals not backed by ‘hard evidence’ (e.g., quantitative data). Second, the Ohio state government was controlled by Republicans, staunch advocates for jobs, workforce development, and economic growth. (Indeed, the majority of legislators at April 10th meeting were Republicans.) Many of these individuals, while sympathetic to the OSC’s social mission, were either skeptical of or politically opposed to legislative solutions that would require using tax dollars. To persuade these policymakers to consider a legislative solution like the Florida Bill, the OSC would need to build a case including both ‘hard’ data and a convincing argument that expanding postsecondary access for students with I/DD would be a good thing not just for Ohioans with disabilities and their families, but for the state’s larger workforce development efforts.

The frequency with which workforce development is invoked in policy discussions dominated by Republicans attests to its status within conservative ideology as an “ultimate term,” Kenneth Burke’s (1969) construct for words that subsume all others in a given discourse. Burke observed that whereas dialectical terms keep competing voices in a fluid state of unresolved conflict, ultimate terms place voices “in a hierarchy, or sequence, or evaluative series” (p. 187). Conceived of as an ultimate good, workforce development has a way of subordinating all other policy considerations in Republican- controlled governments, pushing aside efforts to promote the public good by other means.

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(Of course, ‘workforce development,’ the way many Republicans conceive of it, is code for a particular set of policies favoring business owners and managers, often at the expense of the working class and minorities.) In conservative states, securing state funding for programs like STEP thus involves considerable rhetorical finesse. Arguments appealing to equality, fairness, or the social benefits of education, while not ineffectual per se, usually must be translated, threaded through the vernacular of economic growth, to gain traction. Accordingly, I observed that the OSC advocates present at this meeting were careful to use language that couched their proposals in terms of workforce development, and that the lawmakers seemed responsive to these appeals. For instance, one participant used a version of a line I myself had employed in many of the grants I wrote for the Austin Clubhouse, a small mental health nonprofit in Austin, Texas: ‘You can either fund the problem up front or on the back end; the first choice is always less expensive than the second.’ Disability advocates in ‘red’ states like Texas (and increasingly, Ohio) perceive this argument to be effective, because it forces conservative auditors into a dilemma with only two ways out: paying for workforce development, or paying more into welfare programs such as Social Security Insurance (SSI).

On top of her work for John Dewey and the OSDA, Christine was very active in organizing this meeting. The 2017 Legislative Advocacy Day and the April 10th, 2018 meeting (referred to hereafter as the Ohio Legislator Meeting, or OLM) were part of one comprehensive effort to secure state support for OSC students, both in the form of program support and tuition dollars. When I interviewed Christine on October 19th, 2017, she made no secret of how hard she and others had been working to make the OLM

168 happen. She had once again put her networking skills to work, sending emails, making calls, and meeting with several legislators personally to prep them for the meeting.

Christine was instrumental as well in helping the OSC build its case that (a)

TPSIDs are beneficial for the Ohio economy, and (b) that the OSC was making a good faith effort to collect as much employment data (basic job data and data demonstrating that OSC students were entering in-demand job fields) as possible. However, the challenges facing the OSC team in collecting this data were daunting. At the time of the meeting, the Ohio Department of Education did not disaggregate many kinds of employment data by disability status, meaning that a lot of TPSID students’ successes, measured in terms of courses/trainings completed or jobs worked, were getting lost in the noise of the Department of Education’s disaggregated data sets. This made it difficult to argue that the state should be doing more to help pay students’ tuition for courses that were preparing them for in-demand careers. Furthermore, as Christine would energetically point out, the state’s conception of what qualifies as an ‘in-demand’ career had a tendency to discount the experiences of TPSID students and people with I/DD more generally. When I interviewed her, Christine explained to me that while many people with disabilities were entering adult service careers, certain adult service courses offered by the TPSIDs were not counted as “Industry Recognized Credentials” (IRC), a designation the state uses to reward programs that prepare students for in-demand jobs:

“And… the big challenge… are they [the students] going into an Industry Recognized Credential

career? And… that’s like meaning, did they require a license or certification? Well, like the Social

and Human Service Assistant [program] at Columbus State, that thing… you need to have adult 169

services certification. Or, there’s the Early Childhood Aid one… and so early intervention

specialist certification. We’re trying to look at the rules and see: what are the required classes

needed to be certified? And we match that with the rule for the classes. And then, they can’t say

that we’re not trying to work on making sure we’re following the rule, then they can’t be denying

grant money for this program.” (I)

Redefining certain TPSID courses as Industry Recognized Credentials, as explained by

Christine, was one strategy the OSC had come up with to demonstrate the economic value of its programs and convince the state to pay more towards TPSID students’ tuition. I personally was persuaded not only by the clever logic of such arguments, but the tone with which Christine explained them to me. Christine was fired up as she told me about the complicated hoops programs like STEP must jump through to prove their economic value to the state. She sounded particularly indignant at the idea that, after all this work, the state still might not allocate grant money to help students pay for these classes. “[If] they don’t cover it,” she said, “why are they… they don’t seem like they’re following the rules, then.”

The problems with the state’s methods of determining what counts as workforce development extended further than the rules for IRC designation. Christine insisted that the Ohio Means Jobs website, a job search website used by the state to funnel job seekers toward in-demand careers, was loaded with inaccuracies:

“[W]e’re talking with Ohio Means Jobs, and… that website is way out of date, because… on the

Social/Human Services… they only say ‘require high school diploma.’ That’s not correct. You

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need to have, uh, a certificate… you have to go through all these seminars in the Home Aide and

Personal Care Staff [program]… like, um, Major/Unusual Incidents [?], um, Behavior Support…

Intro to DD, and so much more. They don’t seem to have their ducks in a row here for… what is

counted correctly” (I)

The state was underselling the barrier of entry to social/human services careers, a job field many Central Ohioans with I/DD were entering in 2017-2018. Furthermore,

Christine explained, there were certain Social/Human Services careers that weren’t counted on the website as in-demand:

“Direct Support Professionals? They don’t even have that on the in-demand

careers on Ohio Means Jobs. That’s… a humongous in-demand career… because

they are short-handed on staff.” (I)

Christine’s lived experience as someone who depends on social/human services acquaints her with Ohio’s dearth of direct support professionals; her intimate knowledge of this and other injustices enable her to persuasively redefine what counts as an in-demand career.

The fact that Christine’s knowledge is not reflected in the state’s system for identifying and resourcing in-demand career fields is an injustice. The state’s failure to legibilize the economic and societal contributions of Ohioans with I/DD was no mere technocratic oversight; it was a mistake rooted in larger systems, and histories, of oppression. The economic and societal contributions of TPSIDs to the state of Ohio were unclear not because the advocates hadn’t done their due diligence; they were unclear because the

171 state had rendered them illegible in the first place. By surfacing these inconsistencies,

Christine’s rhetorical intervention takes the state’s directive to the OSC to collect more data and twists it into a demand that the state justify its unfair policies to Ohioans with disabilities. Whether or not Christine came up with this critique on her own is less important than the way she delivers it: her ethos gives it a unique persuasive power.

Thanks to her networking abilities and her role in organizing the OLM, Christine was able to put this argument forward for consideration at the meeting. Prior to the meeting, she had informed Rep. 1 of the IRC pilot program and the data-collection challenges the OSC team had faced, as well as the various problems with Ohio Means

Jobs. While Christine once again did not speak all that much at the meeting (there were many advocates present, all of whom took at least one speaking turn), her behind-the- scenes work evidently paid off when Rep. 1 artfully brought the data collection issues up for discussion, inviting the OSC team to clarify some of the difficulties they had encountered in gathering this data. This led to a discussion of the Ohio Department of

Education’s failure to disaggregate data on disabled students. The revealing of this fact put the representatives on their heels, somewhat, calling on them to clarify why the data was so important. They explained that there had been troubles with Ohio Department of

Education programs that had received state funding yet failed to adequately collect and report data. Rep. 1 emphasized that “[w]e need to be sharing their [The Ohio Department of Education’s] data to know if the [OSC] program is working.” He then asked what the representatives at the meeting could do to help with this particular issue, opining that federal statutes on data collection were part of the problem.

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Getting the policymakers to admit (or at minimum, recognize) why their insistence on hard data was problematic created an opening in the meeting for other forms of evidence to gain rhetorical traction. Students and parent advocates who had been invited to explain how the TPSIDs had benefitted them gave compelling, emotional testimonies. In addition, letters were handed out offering further qualitative evidence of the TPSIDs’ human value. While these forms of evidence no doubt would have been effective on their own, Christine’s backstage labor enhanced their impact, specifically by diminishing the effectiveness of the lawmakers’ arguments that more data was needed before they could consider funding the programs. This created an opening as well for one

John Dewey staff member to point out that ‘Florida doesn’t have employment data yet, but they are funding new programs nevertheless.’

Discussion

Spreading access through workplace interactions, finding footholds in large discussions for subordinated interests, framing issues for the I/DD community, critiquing dominant discourses to empower subaltern forms of evidence—these are all ways in which Christine Brown’s rhetoric shapes both policy and policy deliberations. Through strategically applying her professional self-advocacy skillset in one-on-one correspondences, small and medium-sized meetings with policymakers, and large gatherings of the Ohio I/DD community, Christine circulates lived, embodied, and very often critical perspectives that change the way language is used and reality is perceived.

Materially, these interventions lead to crafty if unheralded manipulations of policy that

173 make the world more livable for people with I/DD; the particular interventions I observed led to administrative rule changes in the Department of Higher Education making it easier for Ohioans with I/DD to get grant money for college tuition, as well as rule changes in the Department of Developmental Disabilities enabling TPSID students to use the state’s accessible transit system to get to and from class.

On a practical level, these findings have implications for how rhetoric, writing, and professional/technical communication teachers think about the skills their students need to be effective public advocates. In particular, studying the work of professional advocates with disabilities offers a way public and professional writing teachers can more meaningfully contribute to disability justice initiatives in their communities. Christine’s accessible language practices present a practical model for technical communicators who, heeding the call of scholars such as Natasha Jones (2016) and Angela Haas (2012), are searching for ways to reconstitute technical communication as a form of advocacy.

Studying the techniques of disabled advocates, whether through direct partnering or indirect means, students can refine and reframe their plain language skills through composing accessible websites, policy briefs, and other professional genres. Moreover,

Christine’s rhetoric highlights the importance of non-writing skills teachers sometimes take for granted, such as listening, turn-taking, and persistence. For nondisabled students, learning rhetorical listening skills (Kerschbaum, 2012; Ratcliffe, 2005) that create space for speakers who struggle with communication is doubly important.

On a more theoretical level, these findings point to fresh ways of thinking about agency as it relates to dis/ability, representation, and circulation. Christine is

174 demonstrably adept at the skills enumerated above. And yet, many of the people

Christine speaks for physically cannot do what she does. The biennial Legislative

Advocacy Day provides one point of contact between people with more ‘severe’ disabilities and lawmakers. Yet my data suggests that that contact is heavily filtered by

(frequently nondisabled) intermediaries. The general mentally disabled public’s lack of access to the more ‘private’ spaces where Christine works—the meetings at the Riffe

Center, the one-on-one phone calls with legislators—forces us to revisit some of the limitations of self-advocacy discussed in Chapter 2. Christine’s advocacy indeed features many of the institutionally-sanctioned characteristics of communication enumerated in

Chapter 2—it is goal-oriented, rational, self-regulated, and autonomous. It comes as little surprise that these characteristics would prove as vital—as agential—in the statehouse as they are in academia. Statehouses, like colleges and universities, have throughout history stood for values that are the virtual antithesis of intellectual disability

(or, more accurately, the antithesis of what intellectual disability is perceived to be). One will have a hard time getting a meeting with their state representative if their email is not curt, ‘coherent,’ and to-the-point, or if their speech is too affectively charged. Rhetorical critics such as Lewiecki-Wilson (2003) thus do right to point out the problems that liberal norms of representation pose for democracy, norms mandating the few speak on behalf of the many.

In full view of representative democracy’s limitations, I hope, by using insights from circulation studies, to have mapped out some of the streams and channels whereby disabled rhetors working within traditional (representative) public spheres circulate

175 critical meanings and material practices with measurable impacts. These circulated interventions indeed have the power to thwart liberalism’s attempted erasure of disabled bodies and voices (Hamraie)—even when they move through less accessible spheres of influence, or when they appear to conform to dominant ideologies. Thinking through a circulation lens shows us as well how professional advocacy and protest work in literal connection. Christine’s local networks are by no means separate from the larger national networks and affective ecologies forged by protest organizations like ADAPT. They are part of one larger network, with advocates like Christine acting as central nodes, as go- betweens bridging both worlds (we may think of Christine’s Facebook network as one point of contact). By securing access to deliberative procedures/processes, professional self-advocates like Christine indeed use a specialized skillset; but they also prevent policymakers from simply using these processes as a space of retreat from public view when the protests outside their doors heat up. By locating rhetoric in space and time, circulation thus gives us a materialist framework for reapproaching how we view the distributed labor of representation, providing a fuller picture of disability’s growing rhetorical power in traditional democratic spheres.

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Chapter 5. Emergent Theory, Emergent Access: Bridging the Gap between Theory- Building and Access-Building in Grounded Methodology

Introduction

It’s early September and I am on my way to Traditions Hall, home of the STEP program, to do some recruiting for my new study. My destination is the tutoring center, a popular studying/student hangout spot, where I hope I can squeeze in a chat with some of the students during their study break. I get to the room, smile, say hello, and take a few minutes to get situated before nervously beginning my rounds. Eventually, I approach a student whom I will refer to as Trey. I ask if I can take a couple minutes of his time to tell him about my study. He’s friendly and seems interested in talking to me. We chat about our hometowns and sports. As we talk, I write down his name on the legal pad I’m holding, getting ready to copy down his email in case he offers it. Noticing this, Trey casually asks, “So you take down notes on what we say and stuff?” I am surprised and a little embarrassed. “No! I was just gonna take down your name and contact info, in case you decide you want to participate.” I chuckle. He grins, and the conversation moves on.

But I’m flustered. The notion that I would jot down notes on a person while meeting them, without their consent, runs counter to my training and self-image as an ethical, empathetic researcher. Worried that I’d presented myself in a negative light, I rushed to repair the perceived offense.

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I would later come to learn that research is a routine part of life in the STEP program, as it is in many Transition and Postsecondary Programs for Students with

Intellectual Disability (TPSIDs).34 Trey didn’t seem particularly vexed by my note- taking. Judging by our subsequent interactions, it hadn’t soured our relationship.

Thinking back on this interaction now, I realize my reaction to Trey’s question was based on certain assumptions I’d made about his orientation toward my research that were themselves products of my personal experience and my academic training in disability studies, rhetoric and writing, and social research methods. The abuses perpetrated against disabled people in the name of research is a subject thoroughly documented in the DS literature (cf Foucault, 2001 & 2003; Trent, 1994; Samuels, 2014; Dolmage, 2017a).

This, along with my reading on research ethics (cf Scott, 1973), made me aware of the power I wielded as a researcher—in particular, as an able-bodied, white, cis, male researcher—in relation to Trey and other potential participants. Having recently completed my institution’s required Human Subject Protection training, I’d learned how to negotiate these power dynamics, conceptually and materially, through the lens of consent. Not until Trey consented to participate would any note-taking be thinkable. Even then, I would still need to figure out how to write notes, and dissertation chapters, that represented my participants in ways I thought they would be comfortable with (for instance, by using person-first language, despite its controversial status in the disability

34 Ohio’s Statewide Consortium (OSC) of CTPs conducts ongoing longitudinal research on STEP students’ academic performance, employment opportunities and outcomes, social participation, and health and wellness. The majority of STEP students participate in this study throughout their time in the program.

178 rights community). These concerns were not entirely altruistic, either; I needed the students to trust me, to want to talk to me, or the study was going nowhere.

Consent is but one of the many ethical complexities of inclusive research, a broad term I use in this context to refer to research that includes people with I/DD (see

Walmsley, 2011; Williams, 1999 & 2011).35 Our cultures’ and institutions’ ideas about consent are laden with assumptions about mental competence and its relation to agency

(Gill, 2015). Ideas about consent vary in relation to activities and contexts, too. Whereas I began my study with one set of attitudes vis-à-vis the role of consent in the research process—attitudes predicated on a post-colonial, social constructivist conception of research as epistemic violence—I’ve come to adopt a different set of attitudes. In particular, I’ve arrived at a more critical appraisal of my initial tendency to perceive participants solely as vulnerable. I’ve come to see how, left unchecked, such perceptions can paradoxically deny participants agency, leading researchers to ignore the complicated ways marginalized subjects orient to, and navigate, academic research. What did Trey seek to gain from my study? Was his question about my note-taking defensive, as I assumed, or was he trying to make a connection to my work? My openness to these questions emerged from my sustained engagement (‘intimate familiarity’) with the STEP

35 Discourse analyst Val Williams writes that “[i]n inclusive research, nothing can be taken for granted; doing this type of work throws into question both the strategies for inclusion and also the activity called ‘research’” (2011, p. 10). Williams’s book Disability and Discourse (2011), as well as her article “Researching together” (1999), offer a model of how inclusive research can be carried out in language studies disciplines such as rhetoric and writing studies. She advocates a practical participatory approach, in which people with LD (her preferred term) claim influential, yet manageable, research roles. 179 program.36 While my consent procedures have not changed as a result—nor would I advocate they change—I have a new appreciation for the IRB consent process as a space of questioning: an opportunity to explore shared goals and values between researcher and participant.

How do we as researchers categorize insights such as these? Reframing research recruitment as a chance to discuss shared values is not a theoretical insight, per se. Out of respect for human subject research’s imminently tactical (and rhetorical) nature, I certainly do not tender this approach as equally valid for all researchers. Nor is this

“fresh” take on recruitment markedly different from what participatory action researchers have been calling for for decades.37 Whatever we call them, inductively-derived, relational insights like this are one of the great payoffs of grounded, ethnographic methods. Immersion in a community, in its unique local practices and ways of knowing, leads researchers to adopt emic perspectives. Considering these perspectives generates questions the researcher wouldn’t otherwise consider.38 Such emergent lines of inquiry— openness to pursuing new leads grounded in local contexts—are thus an important feature

36 Since my study is not a full-blown ethnography, I am hesitant to claim that I achieved “intimate familiarity” with my site. Hence the scare quotes.

37 See The action research planner: Doing critical participatory action research by Kemmis, McTaggart,

& Nixon (2014).

38 Ethnographer Richard Agar (1996) calls these moments of departure from the researcher’s expectations—moments often marked by feelings of confusion and surprise—“rich points.” Rich points can reorient entire studies, generating nuanced meanings and interpretations unreachable via more “distant” methodologies.

180 of what Theresa Lillis (2008) has called “deep theorizing,” theoretical work that bridges the supposed gap between our objects of analysis and their contexts (in this case, between our ideas about how people with disabilities orient to research and the lived realities that give those orientations unique depth and meaning).

In this chapter, I ask: how can the insights that emerge from location-based research orient our research practices toward greater access and inclusion? What relational wisdom do we stand to gain from grounded, ethnographic methods, in addition to the epistemic wisdom (theory) we look to such methods for? These questions seem especially pressing now, as the rhetoric and writing studies professional community passionately debates ways to make our research practices truly inclusive. Since the 1980s, the field has turned an increasingly critical eye toward our methodologies, troubling the racist, imperialist logics undergirding traditional western academic research methods such as literary analysis and ethnography (cf M. Powell, 1999). In response to these critiques, anti-racist and feminist researchers have attempted to normalize feminist research values such as equity and reciprocity in the ways we study writing (cf Sullivan and Porter, 1997; Barton 2001; Powell & Takayoshi, 2003). More recent critiques have called attention to the troubling gap between these methodological reform efforts and the field’s reluctance to pursue equity and reciprocity in institutional practices such as assessment and tenure review (Kynard, 2015 & 2016).

An important element in all these critiques is the notion that the division between theory and practice, or “the epistemic” and “the relational,” have material, lived consequences for our more vulnerable students, researchers participants, and

181 colleagues.39 Carmen Kynard’s (2015) rebuke of (primarily white) academics who talk the anti-racist talk vis-à-vis methodology but don’t walk the walk when it comes to how they treat their students and colleagues is illustrative in this regard. Our publications, our tenure and promotion practices, and our pedagogies are configured around rewarding contributions to the epistemic. This incentive structure has helped enrich the field’s methodological discourse, in particular discussions of the links between method and theory. By contrast, our maps of how our research practices (re)make the social are far less complete, because this has been a subordinated concern. We continue to draw problematic distinctions between epistemic theory as an outcome of the research process and the social relationships our research practices produce, nourish, and sustain.

For scholars invested in inclusive research, these distinctions can create stumbling blocks. Our choices of methods may be influenced more by epistemological concerns such as research questions, theoretical frameworks, or objects of analysis than by how we imagine our relationships with potential participants. Similarly, the theoretical perspectives on offer to help us interpret their findings can seem far removed from the lived concerns of participants. Reading Butler and Althusser, for example, can furnish researchers with useful ideas about how language relates to power and subjectivity, but it will not teach them how to include students with I/DD in their studies. Rather, my study of the STEP program suggests that if college rhetoric and writing classrooms are to

39 In using terms such as ‘epistemic’ and ‘relational,’ my intention is merely to mark the mind/body dualities inherent in our disciplinary practices without necessarily wading into the whole “theory vs. practice” debate. Cf James Berlin’s (1987) social-epistemic rhetoric and critiques thereof (Hawk, 2007).

182 become more hospitable, livable spaces for students with I/DD, teachers and scholars will need to make potentially uncomfortable liaisons with special educationalists, psychologists, and others whose work we very frequently look upon with suspicion.

In sum, questions remain as to how research values such as equity and reciprocity relate to qualitative research’s epistemological goals, particularly theory-testing and theory-building. My goal in this chapter is to think through how these values relate to a third research value, emergence. In what follows, I offer a brief overview of some influential approaches to emergent research in the field, positioning these in relation to my methodology of choice, grounded theory. Influenced by scholars working at the intersections of disability studies and rhetoric and writing (Kerschbaum, 2014;

Kerschbaum & Price, 2017; Meloncon, 2018), I argue that adherence to a feminist materialist disability studies (FMDS) framework can challenge researchers to think differently—more justly—about emergence. In particular, I advocate for situating emergence in relation to access and offer a practice account of how this might work, using anecdotes from my own research. While the field’s investment in emergence is often framed in primarily epistemic terms, by expanding our focus on emergence to include moments, or scenes, of access—defined as “a way of relating to people and places” (Titchkosky, 2011, p. 3)—qualitative researchers in rhetoric and writing studies

183 can keep their inquiries open-ended while making their practices more inclusive of people with I/DD and other forms of disability.40

Emergent Theory

In rhetoric and writing studies (particularly business and technical communication), Patricia Sullivan and James Porter’s (1997) Opening Spaces: Writing

Technologies and Critical Research Practices has become an important touchstone for discussing the ethical complexities and critical affordances of locally-situated research (cf

Grabill & Simmons, 1998; Spinuzzi, 2005; Rickly, 2007; Blythe, Grabill & Riley, 2008;

Rude, 2009). An attempt to reconcile the dominance of empirical methods in ‘computers and composition’ research with late 20th-century postmodernist thought, Sullivan and

Porter’s book urged researchers to employ critical empirical methods; to immerse themselves in the messiness of site-based research equipped with a feminist and postmodern theoretical orientation toward knowledge-making. Such a critical, socially- oriented approach, they wrote, is epistemologically appropriate, since methodology is rhetorically situated; it is not “something we apply or select so much as something we design out of particular situations and then argue for in our studies” (p. 221). Our methods, in other words, emerge from local exigencies. Sullivan and Porter’s rhetorical

40 My argument thus echoes recent calls in the R/WS literature for greater attention to access in curricular design (Dolmage, 2015; Meloncon, 2018), classroom discussions relating communication design and social justice work (Colton & Walton, 2015), user experience (Hitt, 2018), and usability testing (Nielsen, 2018).

184 view of methodology as locally emergent significantly influenced how business, technical, and professional communicators of the aughts implemented inclusive methodologies such as participatory action research (PAR) (Blythe, Grabill & Riley,

2008) and participatory design (Spinuzzi, 2003 & 2005). Today, even researchers who do not claim explicitly participatory approaches seem to accept Sullivan and Porter’s observation that “what participants say and do can change the focus of research” (p. 52).

Opening Spaces was one of the first texts I read in graduate school. Sullivan and

Porter offered me a map for how rhetoric and writing research could be simultaneously empirical, open-ended, and ethical. Another early influence on my research praxis, sociologist Kathy Charmaz’s (2008) essay “Grounded Theory as Emergent Method,” served as a demonstration of how open-ended methods could also be rigorous. Charmaz argues that grounded theory’s emergent qualities, far from a liability, are its greatest strength; that its combination of “explicit” yet “flexible” strategies enables qualitative researchers to build analyses that are “inductive, indeterminate, and open-ended,” in contrast to more prescriptive scientific methodologies (p. 155). Grounded theorists’ discussions of emergence, however, have a different flavor than the feminist, relational emergence invoked by Sullivan and Porter. As Charmaz explains, grounded theory’s emergent qualities are rooted in its unique analytical processes. Its explanatory power derives from abduction, a form of reasoning that “aims to account for surprises, anomalies, or puzzles in the collected data” (p. 157). Constantly questioning the labels, codes, and theoretical categories one uses to explain their data, forming new hypotheses, and collecting more data to test those hypotheses steers one’s analysis clear of pat

185 explanations. Without surprise, without disorientation, one cannot be completely sure they are not merely applying existing theories to emergent phenomena. As Charmaz writes, “[t]he […] tensions between asking and applying […] substantially affect the extent to which grounded theory remains an emergent method or becomes a method of application” (p. 158).

Sullivan and Porter’s feminist, postmodernist approach to empirical research and grounded theory offer somewhat different visions of methodological emergence. The former is more focused on emergent inquiry as necessary for enacting equity and reciprocity. Sullivan and Porter emphasize that a locally situated, emergent approach

“helps [researchers] realize what doing good and avoiding harm might mean in particular settings and for particular studies” (p. 109). In grounded theory, emergence is a phenomenon related to abduction and the evolution of one’s inquiry in relation to their shifting interpretations of the data. While these approaches are not necessarily mutually exclusive, my own experience suggests that the theoretical and pragmatic relationship between the two is underdeveloped in the field’s methodological literature. This gap has pragmatic consequences for researchers attempting to do inclusive research. Over the course of my study, there were several moments where I felt torn between nominally epistemic and relational concerns. This feeling was perhaps most acute during my interviews, where my efforts to be accommodating toward my participants translated into an open-ended, somewhat freewheeling interview style that left me with occasionally unfocused transcripts. Coding these proved frustrating; I felt I was constantly drifting from my initial focus on rhetorical agency, floating along currents of data and codes with

186 few discernible patterns. Compounding the problem, I was uncertain of just how far to go in suspending my preconceived notions (“researcher bias”). Was I to dissociate the phenomena I was observing from my theoretical understanding of ableism?41 These epistemic quandaries played out amid a morass of personal and relational concerns.

While I was doing theory, I wondered how useful that theory would prove to the field, the

STEP program, and the Ohio self-advocacy community. Of what use was the term

‘rhetoric,’ for example, if more familiar terms (e.g., ‘communication’) could be used to describe what I was seeing?

It is tempting to locate these dilemmas in grounded theory’s methodological limitations. The methodology has been critiqued for its prescriptiveness and for its rather positivistic take on researcher bias.42 The more recent constructivist iterations of grounded theory abandon Glaser and Strauss’s (1967) focus on filtering out researcher bias via techniques such as memoing and iterative coding. Adele Clarke (2005), for instance, has argued that the researcher’s prior experiences, biases, and material interventions must be understood as part of both the research context and the research

41 The question of just how far grounded theorists should go in suspending their preconceived notions has long been a subject of debate in the GT literature. Pigeon (1996) opines that preoccupations with eliminating researcher bias are motivated by a misguided assumption that suspending bias somehow gets us closer to our participants’ perspectives. While true to an extent, such an assumption errs in viewing perspective as objective and not socially constructed. For a demonstration of how grounded theory can be nested within a larger theoretical framework (critical race studies), see Maria C. Malagon, Lindsay Perez Huber, and Veronica N. Velez (2009). 42 Tavory and Timmermans (2014) attribute much of the formalization of qualitative research that occurred in the 20th century to competition from quantitative paradigms (p. 3). See also Gasson (2004).

187 product. In this view, what grounds grounded theory isn’t just the data, but a commitment to representing all subject understandings, interpretations, and intentions, including the researcher’s, as perspectival (p. 4). Through documenting the impact of their evolving perspectives on the research activity (via memoing, modeling, and similar strategies), constructivist grounded theorists can, in the words of S. I. Miller and Fredericks (1999),

“articulate a unique context and logic of discovery” (p. 538). At minimum, this commitment to explanation makes grounded analyses “confirmable” (Gasson, 2003), if not objective. Thus, whereas classic GT locates emergence in the abandonment and/or refinement of old theory, “[c]onstructivists […] view the emergent nature of the method

[…] as arising from researchers’ questions, choices, and specific strategies and […] their earlier and evolving perspectives” (Charmaz, 2008, p. 161).

I attempted to keep my own analysis emergent by practicing analytical strategies such as action coding and theoretical memoing. Memoing in particular provided a space where I could work through my biases as I collected and coded the data. For instance: I noticed early on that, as a rhetorician, I was highly suspicious of the psychometric methodologies the program employed to quantify student self-determination (see Chapter

3). It was quite impossible for me to see the program’s assessment tools as anything but rhetorical artifacts, whose claims to truth (or, more precisely, claims to validity) were based on a whole complex of hidden appeals, many of them emotional. In particular, my reading in critical theory predisposed me to view the relationship between text and audience as power-saturated. During my initial coding of the Arc’s Self-Determination

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Scale Procedural Guidelines, memoing helped me consciously filter out Foucauldian terms such as “discipline” in my descriptions of the text. As I would later write,

“I find myself rushing to deconstruction and critique. I assume there is something dysfunctional or

problematic about the document, so I am looking for ways in which it transmits negative values,

creates false binaries, etcetera. Or, simply ways in which it fails to live up to its name as an

effective measurement tool. I noticed that during my open coding, I switched to participles, to

describing the action of the text rather than focusing so much on the content (word choice) alone.

This seems to be leading to new questions and insights. I’m paying more attention to how the text

seeks to work on its readers, how it seeks to direct actions and interactions, how it seeks to

manage space and time in particular ways.”

Action coding and theoretical memoing were key practices in the evolution of my analysis from a Foucauldian-DS critique of psychological assessment (a la Ellen Samuels and Aimi Hamraie) toward an arguably more “open-ended” genre analysis focused on notions of praxis, or reflexive, ethical decision-making. My account (or ‘theory’) of agency that emerged from this analysis recognizes that test-takers and their helpers do have the power to challenge the way psychometric assessment technologies construct the test-taker’s self-determination, but that this power is constrained by genre ecologies and the compositional choices of the assessments’ authors. In this account, students with disabilities have a limited power to resist, choose, even remix the labels foisted upon them by institutions.

What this account of my emergent inquiry leaves out are how these shifts in my thinking evolved from my social embeddedness in the research context. Ultimately, 189 witnessing how the STEP program enacts its commitment to access was what convinced me that rhetoric and writing teachers/scholars need to be doing more collaboration, not less, with disciplines like psychometrics and special education. One anecdote in particular illustrates this change of mind. A few months after my initial visit to the tutoring center, when I had my awkward encounter with Trey, I returned to Traditions

Hall to attend a lecture by Richard Chapman, a licensed mental health counselor (LMHC) and clinical researcher from the University of South Florida whose work focuses on clients with disabilities and their families. Chapman, who has cerebral palsy, had worked extensively with the Florida Advocacy Network, spending six months teaching self- advocacy skills in a sheltered workshop. He and his colleagues at USF were hard at work developing a self-advocacy skills inventory not totally dissimilar from Wehmeyer’s SDS, but based on a critical disability studies framework. Chapman’s presentation helped me realize how one could integrate psychometrics and critical disability studies, a methodological fusion I didn’t think was possible. Moreover, the interactions I observed between Chapman and his audience, a group comprised mostly of faculty, master’s, and doctoral students, revealed to me some of the ways clinical researchers negotiate access- knowledge (Chapter 4) in professional contexts. It dawned on me that, while disability studies might critique certain practices in special education (and rightly so), many of our practices in the humanities (such as high theory) produce access barriers that we tend to view as unproblematic. I’ve thus become skeptical of critiques that target entire disciplines, viewing what Kemmis, McTaggart, and Nixon (2013) refer to as “practice architectures” as a more exciting subject of critical inquiry.

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Grounded theory (has) helped me make sense of all this, enabling me to connect my remembered encounter with Trey and my notes from Richard Chapman’s presentation to my evolving (re)assessment of the STEP program’s research practices.

The tension between my etic perspective—research is fraught with the potential for exploitation and epistemic violence—and my participants’ emic perspective—which I’d characterize, to the extent I am able, as ‘research presents participants opportunities to enact particular forms of agency’—opened up new lines of inquiry that have ultimately pushed my study into unexpected territory. This new direction emerged from my application of grounded theory heuristics, embrace of an abductive analytical process, and immersion within a particular relational context.

Emergent Access

The debates that have shaped grounded theory’s development as a methodology focalize an important question: What, exactly, emerges through grounded theory? Classic grounded theorists, a la Glaser, Strauss, and Corbin, focus on the emergence of theoretical categories that can adequately explain one’s data; constructivists such as

Clarke, seek the emergence of narratives that situate the knowledge-making process in its local context. In either scenario, emergence entails an openness to pursuing surprising new leads. Yet as sociologists Iddo Tavory and Stefan Timmermans (2014) suggest, grounded theory’s somewhat cultish devotion to emergence can lead researchers on a

191 never-ending inductive goose chase, forever seeking new data and perspectives on an exhausting quest for theoretical saturation.43

Emergence needs a shape, a direction. The frustrating dilemmas I experienced conducting my own research are common in grounded investigations, where multiple analytic paths—some theoretical (that is, emanating from the literature), some relational—are emerging all the time. Ultimately, an unintended consequence of my indecision was that, in my efforts to construct a confirmable chain of inference and analysis, from data to code to theoretical category, I ended up spending more time coding in NVivo and less time interacting with my participants than I would’ve liked. This seemed especially problematic given my project’s inclusive ideals. While grounded theory’s analytical techniques could conceivably be carried out in collaborative, participatory settings, I’ve yet to encounter any literature that discusses how this might work in an inclusive setting, where some or all of the participants have disabilities impacting communication and/or cognition. All in all, constructivist grounded theory seems to offer a more relationally sensitive version of grounded methodology (a la

Sullivan and Porter) than classic grounded theory; yet in centering the researcher’s

43 Tavory and Timmermans (2014) have argued that GT’s emphasis on emergence leads to many grounded analyses (a) getting bogged down in method and (b) producing studies long on description but short on actual theory. They suggest that researchers should instead bring an in-depth knowledge of a broad range of theories to the research context. This background knowledge can help researchers form hypotheses about their data and test those hypotheses using abductive analysis (pp. 4-5). Such analyses, they argue, lead more readily to the substantive, midrange theories grounded theorists are after.

192 evolving perspective, even constructivist GT privileges a mode of analysis that isn’t particularly accessible to people with I/DD.

Focusing on emergent inquiry in relation to access can offer empirical researchers a conceptual space for thinking about how a project’s theoretical goals can align with the broader social and political objectives of inclusive research. In considering access itself as an emergent property of research, I turn once again to Tanya Titchkosky’s (2011) definition of access as “a way of bringing life to consciousness, a form of oriented social action, and a way of relating to people and places” (p. 3). Access, according to

Titchkosky, is not a binary state of affairs, something one does or does not have. It is a way of thinking about, discussing, and perceiving relations among bodies (and objects) in a given space, at a given moment. Titchkosky, along with DS scholars such as Nirmala

Erevelles, Alison Kafer, Ellen Samuels, and Aimi Hamraie, as well as disability rhetoric scholars Stephanie Kerschbaum, Margaret Price, Jay Dolmage, and Melanie Yergeau, belongs to an emerging scholarly discourse I refer to as feminist materialist disability studies (FMDS). Broadly, FMDS explores the braided implications of feminisms and materialisms for the way scholars (and members of the public) understand disability (see

Chapter 1). The way FMDS scholars discuss access—as a relationship rather than a measurable entity—is predicated on a critique of the social model of disability, a model according to which disability is seen as a product of the material environment and the social world. As Aimi Hamraie (2017) explains, despite the social model’s valuable intellectual contributions to disability rights movements around the world, one paradoxical consequence of the model has been a proliferation of rehabilitation

193 discourses, such as some versions of Universal Design, that “make it possible to imagine a world without disability in it” (p. 13). By contrast, FMDS scholars emphasize disability as a potentially valuable state of being and a critical epistemology (or “cripistemology”).

Such disabled epistemologies have a powerful generative potential to reorient our social and political relations toward greater “access and engagement” with nonnormative bodyminds (Kafer, 2013, p. 3). In short, FMDS is a useful framework for thinking through how inclusive qualitative research practices can better tap into the world- transforming potential of disabled people’s access-knowledge (see Chapter 4). Rather than viewing access solely as a way to erase differences or ‘level the playing field’

(important though these objectives may be in many situations), FMDS helps researchers practice access as a form of critical perception.

In their article “Centering Disability in Qualitative Interviewing,” Stephanie

Kerschbaum and Margaret Price (2017) demonstrate how this perspective can be applied to qualitative interviewing. “Centering disability,” they insist, “is about much more than simply compensating for or including disabled researchers and participants. Rather, it means posing the question: If we assume that disability is part of the qualitative-interview situation, how does that unsettle commonplace assumptions about qualitative interviewing” itself (p. 98)? In other words, accommodations and adjustments such as asking the interviewee for more time, requesting reminders of something said earlier, and avoiding eye contact—any of which might be necessary in an inclusive research context—“are not simply compensatory measures aimed at bringing the interview back to its presumed ‘normal’ state,” but material interventions with unique “inventive” potential

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(p. 101). Kerschbaum and Price describe how prioritizing access, for themselves and their participants, produced unexpected (and unruly) configurations of bodies, spaces, and objects not accounted for in the methodological literature, which emphasizes normative interview techniques such as turn-taking and eye contact and tends to imagine both interviewer and interviewee as nondisabled. The emergence of these unanticipated configurations led Kerschbaum and Price to question commonplace assumptions about framing techniques (for video-recorded interviews) and telephonic interactional norms.

For example, in order to accommodate both Kerschbaum, who is hard-of-hearing, and a participant (“Denise”) who requested to speak over the phone, Kerschbaum and Price set up an Internet relay that captioned Denise’s words as she spoke into the telephone receiver. Kerschbaum was thusly enabled to read and react to the captions in real time, as they appeared on her computer screen. To capture the interaction, Kerschbaum and Price put the call on speakerphone and video-recorded Kerschbaum responding to Denise’s voice, without picturing the screen. Due to a technical quirk of their apparatus, however—a time lag between the telephone audio and the captions—the timing of

Kerschbaum’s and Denise’s interaction appears to be off in the video. “In retrospect,” they write, “it seems obvious that the words on that screen are an integral part of the interactional scene and should have been recorded in real time along with the audio data”

(p. 103). But since captions are frequently considered ancillary to telephonic communication, they did not include them in the frame, thus missing a chance to capture potentially rich data.

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As this story demonstrates, normative heuristics about what data forms ‘count’ can prevent researchers from noticing relationally emergent theoretical leads. In my own interviews, I encountered similar snags. I opted not to video-record my interviews; this was primarily because I wanted participants who preferred to remain anonymous to feel totally assured of their anonymity. I thought the camera might prove a worry and a distraction. I realize now that by eschewing video, I preemptively abandoned a trove of potentially useful data.44 This is especially true concerning my interview with John, who has a speech impairment. As I described in Chapter 2, John uses gestures, tapping, and a smartphone app to moderate his rate of speech. The audio recording of our interview captured little of these techniques, only my verbal descriptions of them. It wasn’t just

John’s access that was affected by the lack of video, either; I too access face-to-face interaction aurally and visually, through modalities such as gesture and facial expression.

Thus, in my attempts to create access by making my participants comfortable, using recording techniques I perceived as less threatening, I paradoxically precluded access for someone like John whose communication style is highly visual. In a study of self- advocacy, this strategic misstep had theoretical implications, impoverishing my analysis of John’s (and others’) visual rhetoric. Ironically enough, my methodological choices

44 In new materialist speak, my orientation to the camera’s agency could be characterized as doubly refracted through the lenses of privacy/consent and rhetoric/writing. I thus ruled the camera out. Had I instead oriented to the camera through the lens of access, I might have come to a very different conclusion concerning its agential potential.

196 thus reified the very structures I was seeking to critique: self-advocacy’s problematic entrenchment in a verbal idiom.

These choices were, of course, based on assumptions learned from my academic training. Rhetoric and writing remains a discipline centrally concerned with words above other forms of meaning. While visual coding techniques have evolved considerably in recent years, methodologies like grounded theory, at least as they are applied in rhetoric and writing studies, continue to privilege the verbal over the visual. I thus assumed that talking face-to-face with STEP students about their self-advocacy practices would yield the most useful data for the purposes of my study; and, furthermore, that audio recording our conversations would suffice to ‘capture’ the students’ meanings. These decisions were shaped by my notions of what my participants would or would not be comfortable with; by my preconceptions about their embodiment; and by my understanding of what it means to create research, to build theory, in the field of rhetoric and writing studies.

Indeed, as I was writing my IRB protocol, I had in mind all the interview-based studies

I’d read for coursework and exams; I could picture the blocks of interview quotations and the authors’ analyses of their subjects’ words.45 Without my knowing it, emulating these models committed me to analyzing but a tiny sliver of my participants’ fully embodied rhetorical agency.

45 Unlike in linguistics, rhetoric and writing studies scholars tend to focus on meso- and macro-level discursive meanings. The techniques for transcribing tone, gesture, affect, etcetera are far less developed in our literature than in conversation analysis, for example (see Williams, 2011).

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The strategic decisions I made about what kinds of data to collect reverberated throughout my analysis. Because much of my interview with John was focused on our efforts to communicate—as opposed to John’s thoughts on self-advocacy—his transcript was the most difficult to code. It was, in short, the abductive outlier. The codes I came up with for John tended to describe the transcript’s interactive elements: for example,

“Asking to repeat” (23x), “Repeating” (24x), “Feigning understanding” (12x), “Checking understanding” (9x), “Disconfirming understanding” (9x), and “Voluntarily enunciating”

(8x). Less frequent but equally interesting codes from John’s interview included

“Recognizing misunderstanding and voluntarily repeating” (4x), “Breaking response into parts to increase understanding” (3x), “Collaboratively breaking down response” (2x), and “Spelling out word to help with understanding” (1x). By contrast, the codes I generated for the other transcripts tended to be more thematic (“Talking about asking for help,” “Identifying strengths and weaknesses,” “Using support network,” etc.). While the interactional data from John’s interview was very interesting, it didn’t mesh with this thematic data I’d collected from other participants.

Conclusion

Methods (and methodologies) that do not anticipate disabled participants often lead to theories that cannot account for disability as anything but disruptive, an inconvenience. Looking back now, I wonder: how might this study have turned out had I made access my ‘emergence point?’ Charmaz (2008 & 2014) advises grounded theorists to repeatedly ask themselves two questions throughout their analyses: What is happening

198 here (i.e., what is the data showing me?)?; and What theoretical concepts does this data seem to be about? While useful for the epistemic business of emergent theory-building, my experience conducting this study suggests that these heuristic questions can sideline observations that occur outside the data: specifically, observations that emerge from our efforts as researchers to form more reciprocal, equitable relationships with our participants. I have suggested that building access is one form this reciprocity can take; and that critically questioning access as we attempt to build it can lead our research down unexpected paths. Building access, in the manner described by Titchkosky, Kerschbaum, and Price, is inherently emergent, in that it so often demands we deviate from our scripts, protocols, and disciplinary programming. Of course, putting such flexibility into practice is easier said than done in our heavily managed university-research contexts. Practically speaking, setting John’s access to the interview—and the data’s access to John—as the epistemic-relational ‘emergence point’ of my unfolding analysis would have likely required amending my IRB protocol (a fourth time). As I was already halfway through my study, I didn’t think such a change would be feasible vis-à-vis my timeline to graduation. Titchkosky (2011), ever mindful of these realities, offers that such bureaucratic dilemmas can produce yet more grist for the analytical mill, in that they reflect bureaucracy’s “paradoxical power to make disability an unmanageable state of exception in the university environment” (p. 10). Orienting our emergent analyses toward access, in other words, illuminates the pervasive institutionalization of knowledge, even when our efforts to make our strategies more accommodating do not pan out.

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In addition to asking ‘What is happening here?’ and ‘What does this data seem to be about?,’ asking questions such as ‘Who has access to this method (of data collection, data analysis, etc.), and under what circumstances?’ can help keep grounded researchers’ emergent analyses oriented toward more inclusive practices and theories. Questions about access, Kerschbaum and Price (2017) point out, attune analysts to the ways in which researchers and participants are constantly “negotiating different experiences of complex embodiment” (p. 102). Attending to these negotiations—and enhancing that attention using time-honored techniques such as iterative coding and memoing—can push our rhetorical theories into surprising new territory.

Like any other methodology, grounded theory is an iterative series of decisions about how to access, collect, and interpret data. When one’s analysis is oriented toward access, new forms of data emerge and old forms of data take on new meanings.

Accommodating participants thus becomes a way of accommodating emergent data (not that these activities have to overlap—accommodating participants is an end in itself!).

Figure 2 illustrates this process in the form of a nested analysis with three concentric circles. The innermost circle represents the researcher’s first question, “What is the data telling me?”; the middle circle, “What does this data seem to be about?”; and the outermost circle, “Who has access to this method?” These questions radiate outward, so to speak, from the researcher’s initial descriptive analysis, but they also fold inward and overlap. By asking the third question in addition to the first two, I could have arrived at a different interpretation of my data on John’s use of an assistive communication device.

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Figure 2 Nested analysis in access-oriented grounded theory

•Method - audio-recorded Who has access interview •Who has access? Oral to this method? communicators

What does this •Analytic code - Collaborative data seem to be communication about?

•Data - John: "The app helps me slow my talking. Has [?] blue and What is the data purple. In [?] these colors it's fast." telling me? •Action code - Using assistive communication

In actuality, my decisions about how to analyze John’s interview transcript (in particular, my decision to code both its interactional and thematic content) led to conceptual difficulties. Namely, my application of a particular analytic heuristic—axial coding—focused my efforts on identifying and dimensionalizing thematic similarities across the transcripts. While John’s data seemed to be telling me that interaction is fundamental to self-advocacy, the other transcripts were pulling me in a different direction. My subsequent coding thus drifted farther from coding for interactions, as I became increasingly engrossed in the interviews’ thematic content. In this respect, I allowed the literature on axial coding (and my understanding of that literature) to shape my emergent analysis, rather than rely on consideration of whether my methods fairly 201 and adequately captured John’s rhetoric (‘the third question’). Ultimately, the interactional dimensions of John’s interview were too compelling to ignore, and I fashioned a theoretical category—“bodily autonomy”—based almost solely on his transcript (technically a no-no in grounded theory). Had I made access-building more integral to this process, I could have sought more data that would have made this category much, much richer.

To be sure, prioritizing access in qualitative research is easier said than done. All researchers arrive with certain preconceptions about their participants’ embodiments that are inevitably exploded by what they find in the research context. When these preconceptions are codified in IRB protocols, reorienting one’s research strategies can be hard to manage, especially when doing so complicates existing consent agreements.

Navigating IRB compliance becomes easier, perhaps, when we remember that the communities and individuals we work with are authorities on their own access; as such, we cannot possibly anticipate the full range of technologies and rhetorical techniques we will need to accommodate them and they us. Composing a perfect protocol should thus never be the goal. As Walton, Zraly, and Mugengana (2015) write, “well-designed, well- conducted community-based research encounters unexpected challenges and serendipitous surprises because power is not centralized with researchers and because complex, dynamic local contexts are informing the work—conditions which are required for good community-based research” (p. 62). If everything is going perfectly to plan, something is probably amiss.

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Finally, in addition to institutional considerations, discussions of accessible methodology should always take labor and precarity into account. Research that enacts the feminist and anti-racist values espoused by Barton, Sullivan, Porter, Kynard, and others is challenging, exhausting work. The researcher must be sensitive to the needs and desires of participants and relentlessly reflexive about their own process. Given the unequal distribution of time, resources, and institutional incentives for research, we need generous ways of reading that keep in mind the power and impact of small interventions.

Feminists have long discussed these material realities in terms of labor, and a burgeoning discourse on access labor (cf Konrad, 2018) gives hope that institutions will begin to recognize the access-building work of inclusive research as rich with theoretical potential.

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Coda: The Credibility Question

The goal of this dissertation has been to understand how agency, expertise, and disability are co-constructed and negotiated in (and through) rhetorical events featuring rhetors with intellectual/developmental disabilities. Through grounded theory and a feminist materialist disability studies framework, I’ve sought to document, analyze, and interpret in situ rhetorical interactions where people with I/DD have a role, and a stake, in the interaction’s ‘success.’ In particular, I’ve concerned myself with self-advocacy, a construct heavily influenced by liberal models of interpersonal and public communication. And I’ve examined contexts related to school and learning, where interlinked and frequently unexamined assumptions about communication, agency, expertise, and disability run rampant.

The idea that mental disability is not something to be corrected or ‘fixed,’ but a meaningful, valuable mode of rhetorical being, is steadily gaining acceptance in rhetoric and writing studies. Cynthia Lewiecki-Wilson’s (2003) challenge to rhetorical scholars to attune our theories of rhetoricity to people with mental disabilities, issued over fifteen years ago, has helped galvanize studies and theories of mentally disabled rhetoric that center non-medicalized ways of perceiving disability: as epistemology, a form of culture, and, as Tanya Titchkosky (2011) defines it, a social “sense-making device” (p. 5).

Throughout these theoretical shifts, rhetoricity has remained a central concern, because

204 people with I/DD and other forms of mental disability continue to be discounted as rhetors with something meaningful to ‘say,’ particularly in “cognitively privileged” domains such as colleges and universities (Carlson, 2001, p. 140).

In disability rhetoric studies, rhetoricity is a distinct concept from agency and expertise. Whereas agency is a kind of mattering, a difference that makes a difference, rhetoricity refers to the processes and labels whereby interlocutors ascribe rhetorical capacity to one another. Lewiecki-Wilson imagined rhetoricity as “inherent to embodied life,” in spite of historical efforts to configure it in relation to one’s capacity for speech.

She identified the unique problems of rhetoricity facing mentally disabled rhetors in contemporary society as adhering in “rhetoric’s received tradition of emphasis on the individual rhetor who produces speech/writing, which in turn confirms the existence of a fixed, core self, imagined to be located in the mind” (p. 157). Ideological links between speech and subjectivity, according to this view, render illegible those who cannot speak or whose speech is marked as ‘confused,’ ‘crazy,’ or ‘incomprehensible.’ This is a different, though related, problem from that of expertise, which derives authority to make claims from historically contingent and locally situated epistemologies.

Melanie Yergeau (2013, 2017) adds that challenges to disabled rhetoricity arise not just from ideologies of speech, but ideologies of reception, highlighting how autistic people’s rhetoricity is denied by those who claim autistics lack “theory of mind” (ToM): the ability to recognize that other people have thoughts, feelings, intentions, and desires of their own. Such theories, Yergeau points out, serve to justify and intensify violence against autistic people. Because autistic people are thought to lack awareness of the

205 minds of others, even of their own minds, they are communicatively incapacitated. This shifts the power to interpret autistic subjects’ words and behaviors to clinicians and other professionals thought to possess the proper ‘decoding’ skills. Yergeau’s work makes the consequences of this epistemological power shift for autistic people explicit; referring to her own experiences with involuntary treatment, she writes: “Questions became statements, and statements became symptoms, and symptoms became my arhetorical body, a body restrained and discarded” (2013, par. 30). Denials of autistic rhetoricity thus overlap with ideologies and systems of expertise (western medicine/psychiatry), with consequences for autistic agency.

Margaret Price’s (2015) feminist materialist reading of the term ‘bodymind’ potentially offers a way around the mind/body dualism at the heart of liberal notions of rhetoricity. Building on Nirmala Erevelles’s (2011) analysis of disablement’s link to racialized class oppression, Price explains the ‘bodymind’ as “a sociopolitically constituted and material entity that emerges through both structure (power- and violence- laden) contexts and also individual (specific) experience” (p. 271). A feminist materialist entwining of body and mind, in other words, is one that pays attention to the structural and individual forces mediating access to language and other aspects of ‘mental life’ we

(that is, academics) tend to take for granted. Price explains that assumptions of able- mindedness (or mental sameness) can limit the way we care for one another, causing us to miss or misinterpret non-normative expressions of pain. In this context, the term

‘bodymind’ is a reminder that our mental lives are as unique and varied as our corporeal forms, a realization that opens up new possibilities for rhetoricity.

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In light of theoretical contributions to ‘rhetoricity studies’ such as these, my study suggests that an important yet sometimes overlooked construct in rhetorical negotiations of agency, expertise, and disability is credibility. Implicitly if not explicitly, the rhetors I observed were very much preoccupied with answering the question, ‘How do I know self- advocacy/self-determination (SA/SD) when I see it?’ This ‘credibility question’ underwrites students’ efforts to obtain accommodations, levy complaints, and join social interactions via use of an interpreter (Chapter 2). It justifies the use of elaborate psychometric assessments in measuring students’ attainment of independent living skills

(Chapter 3). It shapes the strategies professional self-advocates deploy to represent themselves and others in deliberative contexts (Chapter 4). And it determines the methods scholars use to configure SA/SD as an object of analysis (Chapter 5).

The hegemonic triad of speech/writing, self, and mind at the heart of western rhetoric offers a kind of framework for answering the credibility question. According to western rhetorical traditions with roots in Enlightenment thought, SA/SD is knowable through certain discursive regularities. People use language in ways that confirm their subjectivity. This rhetorical ideology influenced my own methodology, in that I designed my interview and observation protocols to track discursive expressions almost exclusively.

In Chapter 2, I essentially tried answering the authenticity question inductively, by looking at the common features of various actions (symbolic and physical) labeled

“self-advocacy” by students, teachers, disability support staff, and researchers (including myself). This led to a discussion of how institutionally-sanctioned self-advocacy

207 strategies are rooted in cultural logics (and practices) of recognition: the valorization of purposive over passive behavior; the elevation of rational discourse over affectively charged utterances; the privileged status of face-to-face conversation as compared to mediated interaction; and so on.

Developing a shared language of what self-advocacy is enables people to recognize it when it appears across institutional, cultural, and linguistic contexts. Yet recognition logics, when they calcify into policy, “dis-educate the sensorium” of an institutional space’s occupants (Titchkosky, 2011, p. 83), invisibilizing embodied signs that in other contexts might signify self-expression. My analysis suggests that one way in which academic policies dis-educate our sensoria vis-à-vis self-advocacy is by playing upon our notions of time. The stories of the students I spoke to reveal the ways in which commonplace notions of self-advocacy are timebound within academic institutions, in two senses. First, self-advocacy is assumed to follow an orderly sequence wherein the student initiates an interaction and their interlocutor responds. Self-advocacy does not

“begin” until the self-advocate speaks or initiates some other symbolic action. This sequence reinforces the individual model of disability (Kafer, 2013): if the self-advocate is responsible for beginning the interaction, professors and other institutional actors needn’t think about access until there’s a ‘problem’ (see also Dolmage, 2008; Price,

2018).

Further, the way self-advocacy is typically talked about—in trainings, web resources, Disability Services offices, etc.—tends to bind it to a developmental chronology, wherein one gets better at it over time. Philip’s story of how he gradually

208 built up the courage to speak up in class, pretending like everything was fine until his grades got bad enough for him to take action, fit this narrative. This notion of linear development is predicated on certain ableist notions of futurity that are in need of complicating, such as the idea that, in the words of Alison Kafer (2013), “we all desire the same futures” (p. 3). Kafer offers the notion of crip futurity as (a) a lens for analyzing the ways in which stories about disabled futures, such as cure narratives, reinforce compulsory able-bodiedness/able-mindedness and (b) a means of imagining different futures wherein disability can be valued for its politically transformative potential.

Kafer’s work suggests that mastery narratives which paper over the embodied and structural conditions necessary for mastery could inadvertently reinforce ableist assumptions that disservice people with disabilities.

The embodiedness of rhetoricity, as imagined by Lewiecki-Wilson, Yergeau, and

Price, implies that our responsibilities to one another do not ‘begin’ when someone speaks up, or when someone gains the capacity to speak up. Our bodies are communicating at all times, in ways we very often fail to recognize. Teaching sensitivity to such embodied signs, while not a current focus of rhetoric and writing programs at most colleges and universities, is a focus of many self-advocacy trainings. In my interview with Christine Brown, she informed me that the community college TPSID she graduated from, which offered a Community Habilitation Assistant certificate, required courses in nonverbal communication, where she learned skills such as “reading people’s

209 faces.” What would it look like for rhetoric and writing curricula to take nonverbal communication this seriously?46

In Chapter 3, I took a different approach to the credibility question, examining the expert professional discourses of psychology and special education for answers.

Psychology, like the lay and professional self-advocacy discourses examined in Chapter

2, identifies SA/SD as adhering in objective behaviors. Leveraging the power of technoscientific text ecologies, psychometricians have developed elaborate rituals to certify particular kinds of observations of SA/SD as more valid than others. In these negotiations, expertise is offered as a way of unlocking students’ rhetoricity, of speaking for students when they cannot find the words to express themselves.

These analyses offer some sense of the rhetorical negotiations that go into determining credible SA/SD. While it’s tempting to conclude that the very problem of determining SA/SD, the ‘need’ to do so, is merely symptomatic of the liberal rhetorical tradition—that the project to ‘see’ SA/SD from the outside is a historically situated, culturally-specific pretense—such a conclusion would be far too academic. In the I/DD world, self-determination is considered one’s entry point into political agency. Self- determination/self-advocacy trainings like Project STIR (Steps Toward Independence and

Responsibility) are where individuals learn how to talk to others about what they are feeling, what they need, and what they want. These trainings are also where many

46 One set of practices FMDS studies of nonverbal rhetoric could productively revisit (and complicate) is chironomia, the classical art of oratorical hand gesture and embodied performance (cf Spoel, 1998;

Munsell, 2011).

210 individuals learn about their rights; about society’s obligations to them as humans and, as the case may be, citizens. My study, particularly my observations of Christine Brown’s rhetoric, suggest that while the strategies of Project STIR and groups such as the Ohio

Self-Determination Association may indeed reify dominant understandings of rhetoric and rhetoricity, their distributed agentic effects, measured in terms of the meanings and affects they circulate within (and without) traditional public spheres, are considerable.

Perhaps, then, a next step for studies of rhetoricity could be exploring the agency of such hybridized approaches. How can credibility be respected and deployed in ways that further, rather than constrain, care for disabled bodyminds?

In the final part of this coda, I turn toward the rhetoric and writing curriculum to explore some ways this question might play out. I began this dissertation with a discussion of how the discipline of rhetoric and writing has contributed to the marginalization of people with I/DD, both in college and society at large. To be sure, rhetoric and writing studies are an important part of the larger social and cultural context that gives meaning to intellectual disability—that creates, or at least reifies, patterns of intellectual disability in our society. The way the field defines literacy has had major consequences for people with I/DD. Very often, phenomena classifiable as intellectual disability come to the fore during literacy events. As Brenda Brueggemann (1999) and others have argued, to group rhetoric with writing, composition, and literacy is to draw a boundary between rhetorical and non-rhetorical being somewhere in the vicinity of writing, implicitly if not explicitly.

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How, then, to meaningfully include students with I/DD in our writing classrooms?

Part of the issue, as my data suggest, is the (neo)liberal university’s discomfort with collaboration. Assessment and ranking are still fundamental to the calculus whereby universities distribute resources, whether those be material/financial rewards or social goods/cultural capital (Bourdieu, 1991). As a result, what count as meaningful literacy/communication skills continue to be primarily associated with individuals rather than collectives. At the end of the day, a student’s writing must be just that—a student’s writing—to count as a transferable, marketable skill. While studies of collaboration and innovative, collaborative models of assessment abound in rhetoric and writing studies, the structure of the university makes it difficult for meaningfully collaborative pedagogies to take root. Nearly every instructor knows group work to be incredibly fraught, due to students’ concerns over grades and achieving a fair division of labor.

While my study cannot offer much guidance on what types of collaborative activities are most effective for students with I/DD, it does suggest that instructors committed to accessibility must make room for self-advocacy in collaborative learning.

We should be wary of the assumption that students with I/DD can be neatly folded into standard ways of ‘doing’ classroom collaboration. If assignments or activities are themselves inaccessible, students with disabilities may be inclined to fake their way through. By centering diverse methods of self-advocacy (speech, intonation, gesture, facial expressions, and so on) in the classroom and teaching students how to attune to one another’s unique self-advocacy practices, instructors can make collaboration more sensitive to students’ shifting, diverse learning needs.

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Observing interdependent communication practices within programs like STEP can guide rhetoric and writing instructors in these efforts. For instance, we have much to learn from the education coach model, where students with disabilities are paired with in- class helpers (usually, other students). STEP students and their educational coaches model caring collaborations that may be instructive in a variety of contexts. Modeling such practices can lead students to consider questions such as: if I’m interpreting for someone, how can I know that I am accurately representing their words? Conversely, if I am the one whose words or gestures are being described, how do I communicate my meaning to my interpreter in a way that enables them to adequately convey it?

How can exploring the rhetorical affordances of such relationships in our classrooms help us destigmatize our dependence on one another? Mapped onto collaborative activities and assignments, questions like these reveal credible collaboration is an area in need of greater theorization if we are to make rhetoric and writing studies a more hospitable place for people with I/DD. This could mean centering self-advocacy in UDL learning environments. It could also mean attending to the ways writer-reader, rhetor-audience, and speaker-listener relational configurations obscure collaborative agencies at play in any given communication event. It almost certainly would require greater attunement to nonverbal communication in the rhetoric and writing classroom.

Attuning to credibility requires collaborative communicators to question and collectively determine: what does true collaboration look like, in this instance? If one person’s preferred mode of communication is dominant, are we really collaborating? If

213 we haven’t discussed how each of us self-advocates, so that we know how to respond to one another’s needs, are we really collaborating? The credibility question, directed thusly, can perhaps guide us toward care and greater mutuality in our ongoing negotiations of what it means to be rhetorical.

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Appendix A. Interview Protocol for STEP Students

Study title: Investigating the Self-Advocacy Strategies of Current and Former College Students with Intellectual/Developmental Disabilities

Interview questions for STEP students

Primary Investigators: Christa Teston, PhD, Sean Kamperman, MA

Introductory discussion: Thank the participant for their time. Review IRB consent form and answer any additional questions as needed. Remind the participant that they can withdraw from the study at any time and that they do not have to answer any questions that make them uncomfortable.

1) Where are you from? 2) How long have you been in the STEP program?

Proceed with these factual “warm-up” questions until participant is comfortable.

3) If the student has brought their Self-Advocacy Plan, have them take it out. Ask them specific questions about the document. Ask them to recall instances recorded on the document, if any.

If no: move on to next question.

4) Tell me about a time you asserted/stood up for yourself. a. If they have examples: have them recount the episode. Ask for as many details as possible (e.g., Who was there? What was happening?). Follow up by asking whether they feel they were successful. If no: why not? Take this question to saturation—ask them to recount as many episodes as possible. b. If no: move on to next question. 5) Tell me about a time you asked for help. a. If they have examples: have them recount specific episodes. Ask for as many details as possible (e.g., Who was there? What was happening?).

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Take this question to saturation. b. If no: move on to next question. 6) How do your conversation skills help you achieve your goals? 7) Do you find you have to talk to people in different ways, depending on the situation, to persuade them or get them to understand you? How so? 8) Do others help you assert/stand up for yourself? Who are they? Can you tell me about a time someone helped you assert/stand up for yourself? 9) Tell me a little about how you like to communicate.

If necessary, clarify with follow-up questions. E.g., “How do you let people know you’re upset, happy, that you need something, etc.?”

10) Is there anything else you’d like to tell me related to the things we’ve talked about today?

Closing discussion: Thank participant again for their time. Discuss when and whether they might be contacted for follow-up interviews.

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Appendix B. Chapter 2 Open Codes

The bolded headings are code categories. Figures in parentheses (e.g., J-2) represent the first initial of the participant’s name and the number of times that code appeared in said participant’s interview transcript.

Self-Advocacy as Goal-Oriented

Asking for help with an academic project (C-1, P-1, J-4) Coming up with plan (D-1) Communicating plan (D-1) Defining problem together (D-2) Defining purpose of college (C-1) Describing reasons for participation in STEP (B-1, P-2) Distinguishing between want and need (C-1) Explaining need for accommodation (D-1) Explaining problem (D-1) Exploring interests (C-1) Feeling confident (B-2, P-1, J-1) Goals (B-1, C-4, D-2, P-5) Growing more confident (D-1) Identifying solutions (D-2) Knowing what they need to be successful (B-4, D-1) Making important decisions (P-1) Not worrying about the future (P-2) Participating in clubs, student activities (C-1) Requesting accommodations from teacher (B-1, C-2, D-3, P-1) Self-promotion (P-1) Self-realization (P-1) Talking about asking for help (B-1, C-1, D-1, P-2, J-4) Talking about career aspirations (B-1) Talking about hard work paying off (P-1) Talking about interests (C-1, P-1, J-2) Talking about likes and dislikes (J-2) Talking about living independently (B-3, C-2, P-2) Talking about making choices (J-2) Talking about personal projects (P-2) Talking about the future (B-2, C-1, D-1, P-5) 234

Self-Advocacy as Rational

Asking for help with an academic project (C-1, P-1, J-4) Classifying different types of interactions (P-1) Coming up with plan (D-1) Communicating plan (D-1) Comparing experiences to identify solutions (D-1) Comparing college to high school (J-2) Comparing prior and emerging experience (B-5, D-7, P-3, J-2) Comparing self to others (B-7, C-2, P-2) Comparing strategies (B-1) Critiquing program (D-6) Defining disability (P-1) Defining disclosure (J-1) Defining independence (P-1, J-4) Defining independence together (B-1, C-1, J-3) Defining others’ roles (D-3) Defining problem together (D-2) Defining purpose of college (C-1) Defining self-advocacy (B-1, C-1, D-1, P-2, J-2) Defining self-advocacy together (B-1, C-6, D-1) Describing reasons for participation in STEP (B-1, P-2) Describing work duties (B-1, D-9, J-1) Discussing consequences of actions (B-1) Evaluating college experience (C-1, J-1) Evaluating communication (C-2, D-1) Evaluating effectiveness of technology (P-1, J-1) Evaluating experience (D-1) Evaluating experience in STEP program (P-1) Evaluating work (D-3, J-1) Explaining behavior (D-3) Explaining how technology helps (P-2, J-1) Explaining interactive preferences (P-1) Explaining need for accommodation (D-1) Explaining what’s good about STEP (B-1) Explaining problem (D-1) Explaining reason for absence (J-1) Failing to define disclosure (J-1) Failing to define self-advocacy (J-1) Identifying solutions (D-2) Identifying strengths (D-1) Identifying strengths and weaknesses (B-2, C-1, P-2) Knowing what they need to be successful (B-4, D-1) 235

Learning from others’ experiences (P-1) Learning new skills (B-1) Making a complaint about staff (D-1) Making comparisons with others’ experiences (D-1) Marking an experience as new (D-1) Morning quarterbacking (D-1) Posing a problem (B-7, C-1, D-17, P-1) Posing a problem with service system (B-2) Reflecting on learning (B-2, C-1, P-1) Reflecting on relation between self and environment (D-1) Reflecting on what is helpful (J-1) Requesting accommodations from teacher (B-1, C-2, D-3, P-1) Reporting an incident (D-1) Self-defining role (D-2) Self-evaluating performance of self-advocacy (B-1, D-2) Self-identifying (B-1, C-2, D-1, P-2) Struggling to define self-advocacy (J-1) Talking about academic struggles (B-2, D-2, P-1, J-3) Talking about accommodations (B-1, D-3, P-1) Talking about asking for help (B-1, C-1, D-1, P-2, J-4) Talking about communicating a problem (D-1) Talking about communication strategies (J-2) Talking about communication struggles (J-1) Talking about communication style (B-1, C-1) Talking about disability (B-1, C-1, P-2) Talking about explaining behavior (D-3) Talking about growth (P-1) Talking about interests (C-1, P-1, J-2) Talking about learning (B-1, D-2, P-8, J-1) Talking about learning strategies (B-1, P-1) Talking about likes and dislikes (J-2) Talking about learning style (P-1) Talking about managing disability (P-2) Talking about self-awareness (B-1) Talking about solution to problem (D-4) Talking about study strategies (B-2) Talking about work strategies (B-1) Talking about workplace accommodations (J-1) Teaching others about self-advocacy (D-1) Understanding disability (B-1) Voicing affordances and constraints of technology (J-1)

Self-Advocacy as Self-Regulated Embodied Performance

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Being judged by classmates (P-1) Blending in (B-1, C-1, P-1) Cool affect (P-1) Describing attire (D-2) Difference between speaking up and acting out (B-1) Embodied communication (C-1) Explaining behavior (D-3) Feeling comfortable talking about disability (P-2) Feeling confident (B-2, P-1, J-1) Feeling shy in particular situations (C-1) Growing more confident (D-1) Navigating space (B-2, C-3, D-6, P-1, J-4) Negative orientation toward peer (B-1) Not feeling comfortable talking about disability (B-1) Self-evaluating performance of self-advocacy (B-1, D-2) Sounding professional (C-1) Talking about being perceived as immature (C-1) Talking about being shy (B-1) Talking about explaining behavior (D-3) Talking about gesture (J-3) Talking about listening (B-1) Talking about misrepresenting oneself (C-1) Talking about self-awareness (B-1) Using gesture and sound effect (J-3)

Self-Advocacy as Independent

Admitting difficulty (B-1, C-2, J-1) Admitting difficulty with past experiences (D-1) Asserting rights (D-3) Comparing independent and interdependent action (B-1) Comparing independent and interdependent work (B-1, D-3, J-1) Comparing self to others (B-7, C-2, P-2) Cultivating allies (B-1) Defining independence (P-1, J-4) Defining independence together (B-1, C-1, J-3) Identifying others who know how to help (B-1) Identifying strengths (D-1) Identifying strengths and weaknesses (B-2, C-1, P-2) Interdependence (B-1, C-1, D-5, J-5) Learning from others’ experiences (P-1) Learning new skills (B-1) Making comparisons with others’ experiences (D-1) Managing busy schedule (B-1, D-1, P-1, J-2) 237

Managing free time (C-1) Not being embarrassed about asking for help (P-2) Reflecting on learning (B-2, C-1, P-1) Reflecting on relation between self and environment (D-1) Regretting not asking for help (P-1) Self-defining role (D-2) Self-evaluating performance of self-advocacy (B-1, D-2) Self-promotion (P-1) Self-realization (P-1) Speaking up at work (D-2) Speaking up in class (J-1) Standing up for others (C-1) Talking about academic struggles (B-2, D-2, P-1, J-3) Talking about accommodations (B-1, D-3, P-1) Talking about asking for help (B-1, C-1, D-1, P-2, J-4) Talking about communication struggles (J-1) Talking about communication style (B-1, C-1) Talking about dealing with an academic struggle independently (J-1) Talking about failure of others to help (B-1, D-2) Talking about growth (P-1) Talking about learning (B-1, D-2, P-8, J-1) Talking about living independently (B-3, C-2, P-2) Talking about others advocating on their behalf (B-1) Talking about self-awareness (B-1) Talking about study strategies (B-2) Telling parent about problem (D-5) Telling staff about problem (D-6) Using support network (B-2, D-1, P-1, J-1)

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Appendix C. Chapter 3 Open Codes

Constructing Credibility

Characterizing/qualifying types of student responses Defining concept Defining pieces of the apparatus Defining scope of scorer judgment Defining valid response Defining what counts as an accurate report Dictating how knowledge may be used Explaining warrants behind scoring procedures How users should interpret data Illustration Jargon Making assertion about method- what counts as knowledge, evidence

Defining Test Administrator Qualities

Assuring students Coaching rhetorical delivery, tone Defining scope of scorer judgment Defining scorer-student relationship Defining user qualifications Delineating what speech/rhetorical actions the instructor may take Describing what the instructor should/shouldn’t say Directing instructor activity Explaining interpretive procedures How administrators should tell students Signaling to instructors how to tell students to respond Telling administrator what to say What administrators should tell students

Conditionalizing Uses and Applications of the Scale

Announcing purpose Characterizing/qualifying types of student responses Criteria for use 239

Defining appropriate use Defining purpose of testing event Defining the purpose of the interaction/event Defining pieces of the apparatus Defining valid response Defining what counts as an accurate report Describing how students may act (e.g. write, dictate, identify, consider) Dictating how knowledge may be used Dictating sharing restrictions Guarding against alternative forms of interpretation perceived as harmful or less desirable How users should interpret data Making assertion about method- what counts as knowledge, evidence Setting time parameters

Describing Procedures

Accommodations Assuring students Coaching rhetorical delivery, tone Delineating what speech/rhetorical actions the instructor may take Describing what the instructor should/shouldn’t say Directing/guiding interpretation Directing instructor activity Directing method of inscription Explaining interpretive procedures Explaining scoring procedures Guiding evaluation of responses Guiding interpretation of scores Guiding physical activity How administrators should tell students Managing space Setting time parameters Signaling to instructors how to tell students to respond Specifying method of accommodation Specifying method of support Specifying what instructors should emphasize Specifying what students should be told Specifying where students should be Telling administrator what to say Telling students what to do What administrators should tell students

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Appendix D. Interview Protocol for Professional Self-Advocates

Interview questions for John Dewey Center advocate

Introductory discussion: Thank the participant for their time. Review IRB consent form and answer any additional questions as needed. Remind the participant that they can withdraw from the study at any time and that they do not have to answer any questions that make them uncomfortable.

1) Tell me a little about your advocacy work. What kinds of activities does it involve?

Take this question to saturation—ask them to describe their work in as much detail as possible. Ask for stories or specific examples.

2) How did you get started? 3) How did you learn how to do this work? Did you pick things up in school? Did you learn anything from watching others? 4) How is reading, writing, and/or technology involved in your advocacy work?

Provide prompts as needed: e.g., “How do you use email in your advocacy work?”

5) Do you find you have to talk to people in different ways, depending on the situation, to persuade them or get them to understand you? How so?

E.g., “When you talk to legislators, what makes them more willing to help you?”

6) Is there anything else you’d like to tell me about your advocacy work?

Closing discussion: Thank participant again for their time. Discuss when and whether they might be contacted for follow-up interviews.

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Appendix E. Acronym Guide

ACA Affordable Care Act ADA Americans with Disabilities Act CRM Central Region Meeting TPSID Transition and Postsecondary Program for Students with Intellectual Disability DD Developmental Disability DoDD Department of Developmental Disabilities I Interview I/DD Intellectual/Developmental Disability IRC Industry Recognized Credential LAD Legislative Advocacy Day OHE Ohio Higher Education OLM Ohio Legislator Meeting OSC Ohio Statewide Consortium OSDA Ohio Self-Determination Association R2a Representative 2, Meeting A R2b Representative 2, Meeting B STEP Self-Determined Transitions and Educational Progress STIR Steps Toward Independence and Responsibility

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