Stephanie L. Kerschbaum, Laura T. Eisenman, and James M. Jones composed a thoroughly engaging anthology exploring possibilities for theorizing access and social justice in disability studies. Disclosure—the moment in which an individual lets it be known that they need services—comprises a complex array of processes and a wide variety of stakeholders. Based on this fundamental disclosure moment, disability accommodations serve the purpose of equalizing access to opportunities, yet as the contributors in this volume point out, equity and inclusion remain subject to systematic barriers.

Negotiating Disability: Disclosure and Higher Education (2017) explores how advocacy and activism are ingrained into the past, present, and future of disclosure. It thematically accomplishes this goal through four sections: disclosure, intersectionality, representation, and institutional change and policy. Each chapter is clearly organized to situate disclosure within contexts shaping "how disability is read, engaged, and negotiated" (p. 5). This volume provides a way to articulate current debates for faculty, staff, and students, both new and returning, to the critical disability studies field. While interdisciplinary, it is certainly appropriate for assigned reading in graduate rhetoric seminars and undergraduate writing courses. Staff will find the anthology beneficial for training purposes, while administrators will find it useful for opening up conversations about disability with unit heads and directors. While most chapters primarily analyze postsecondary contexts, the book is nonetheless useful for secondary teachers and administrators, as well as policy makers and legislators interested in disability rights and advocacy.

This review, while somewhat lengthy, serves the purpose of providing an extensive introduction to the anthology.

Disclosure

The book opens with Samuels' closing keynote at the 2013 Disability Disclosure in/and Higher Education Conference. Internalized and institutionalized beliefs about privilege related to class, race, and ability are powerfully addressed. While Samuels points out that disclosure is a highly risky endeavor for graduate students and faculty alike (p. 19), disability disclosure is ultimately a social justice issue, one that is intersectional in nature.

Alshammari discusses how her identity as a disabled (multiple sclerosis) Bedouin-Palestinian woman makes a case as a hybridized state of being. Arguing that one who is ill/disabled lacks hasham (an ideal womanhood free of shame and manifested through cloaked natural weaknesses or sources of dependency,) she demonstrates how the body is closely associated with shame and honor (p. 36). Alshammari recounts experiences of oppression and isolation in familial and academic circumstances. Her stories of oppression are tied through with the common thread of compulsory able-bodiedness, contrasting negative valences such as lack, failure, and loss with positive associations like identity and voice.

Barragan and Nussbaum study disability perception at a public university. Using a grounded theory approach, the authors found a link between ability to self-love/love others and the internalized oppression resulting from detaching one's own (disabled) identity. Barragan's personal experiences as being disabled help paint this picture by illustrating the following findings: Inaccessible physical spaces, inaccessible social spaces, internalized oppression, deviance and loss, detachment from the disabled-self and disabled others, and turmoil with the divine. Nusbaum discusses implications for university campuses based on these findings.

Knight's chapter begins with an anecdote about first-day teaching with a visible disability to argue the "instructive power of sharing personal stories" (p. 58). Knight, a political theorist, ties storytelling to bell hooks' (1994) feminist pedagogy in terms of disclosed living experiences being closely associated with vulnerability and acknowledgement of subjectivity, ultimately arguing that disability disclosure "becomes an act of political resistance" (p. 61). Through the lens of political theory, Knight details the following findings after having observed her students' engagement with course material: personal empowerment, knowledge production, identity-based group difference, and citizenship practice.

Wood concludes this section by studying the stakes of disclosure at a public university, arguing that educators should listen to the narratives of disabled students as means to learn about rhetorical agency and identity construction. Discussed are agency, stigma, and resistance patterns resulting from disability disclosure. Study findings suggest that fear of isolation and stigma is the result of structural forces, including the overlapping of remedial and special education with sexism and homophobia (p. 82). Other findings describe the embracing of identity communities like Reddit subgroups for people with Bipolar Disorder. Strategies for risk management and selective disclosure are discussed.

Intersectionality

This section opens with Carter, Catania, Schmitt, and Swenson, who discuss barriers experienced as disabled graduate students. Diverse topics such as self-care, multiple-author collaboration, and extensions are woven within the chapter using an autoethnographic method through which the authors converse about the inaccessibility of academia. The chapter uses a conversational style to detail: precarious positionality of graduate students, politics of disability disclosure, intersection of disabled identities with other aspects (race, class, gender, sexuality, nation), and contours of crip life as scholars-in-training. Of note, they argue that disability "cannot be disentangled from other axes of difference and power" (p. 105), essentially defining intersectionality and setting up the rest of the chapters in this section of the volume.

Miller, Wynn, and Webb (p. 115) study disabled LGBTQI+ students' disclosure processes at two universities. Semi-structured interviews reveal challenges to "coming out" due to stigma and discrimination, relating orientation and disability status as part of the process. Presented are disclosure processes dependent upon: context (situation appraisal contingent upon particular faculty members, peers, and college spaces [p. 121]); strategy (to educate or serve as representatives of particular identity groups [p. 124]); avoidance (unintentional disclosure through social media [p. 125]); and comparison (illustration of the disclosure act as being "ordinary [and] every day" [p. 127]). Implications for educators, administrators, and policymakers are presented.

Seelman analyzes higher education enrollment data to study the role of stigma at the intersection of disability, poverty, and race. Findings reveal disclosure and stigma management of students with invisible disabilities choosing non-disclosure "for fear of becoming less competitive" (p.137) for options like Social Security Income (SSI) recipients. Stigma is studied through several angles: social acceptance of (particularly invisible) disability, race, and poverty (Goffman, 1963); feminist representations of the body (Thomson, 1977); government disability programs affecting social status (Stone, 1984); and legal, political, and economic perspective of disability, race, and poverty (Schur, Kruse, and Blanck, 2013). Implications for public welfare policy and practice are discussed.

Harbour, Boone, Heath, and Ledbetter look at how disability and African American culture intersect through use of the term "overcoming," accompanying the authors' own anecdotal experiences and a review of research about disabled African American college students. Analyzing pathological views of overcoming to positive perspectives pertaining to the Civil Rights Movement, the authors generate recommendations for addressing racism and ableism in higher education. Using mentoring relationships and discussions about oppression as examples of how strength and vulnerability are related, the authors explore possibilities for Historically Black Colleges and Universities (HBCUs).

Kaul concludes this section by analyzing the experience of living with disability as a contract worker. The author explores the precarity of disclosure, challenging the field to consider what kind of knowledge can be made out of not-knowing, or not-telling. An anecdote about obtaining an accessible classroom reveals how those seeking information often view disability as a "disruption and emergency" (p. 176). Echoing other contributors, Kaul problematizes invisible disability, arguing "if we wanted to, if we felt safe, if it was in our best interests, if the costs were not too high, we could all disclose" (p. 173). Kaul calls on disability studies scholars to publicly acknowledge their own positionality.

Representation

This section opens with Lewis, who defends madness studies programs in higher education through an analysis of campus mental health services. The author draws on neoliberal postmodernism to argue how neoliberal policies responding to 1980s Reagan era politics influenced the rise of campus health centers focusing on diagnosis and treatment, the publication of the DSM-III which focused on turning the field back to "biological psychiatry" (p. 196), and the rise of the pharmaceutical industry. An argument (centering around narrating and navigating mental difference) for madness studies programs is presented throughout scholarly and personal frameworks.

Sanchez argues that framing disclosure as a singular revelatory moment is reductive because it "mischaracterizes … complex … [information] exchanges" (p. 207) inherent to disability disclosure. Developed in opposition are three alternative models, each of which center flexibility in public disclosure: wheelchair lights, a "DeafBlind and Badass" button, and a "Piss on Pity" t-shirt. Whether it is wheelchair lights offering a taste for colorful accessories, a button strategically using profanity in order to combat notions of fear and pity, or apparel to treat disability as a source of dignity and pride, Sanchez offers a multidimensional analysis of disclosure centering disabled people's interests in their own states of embodiment.

Lukin offers alternatives to the oft-embraced social model of disability (distinguishing between impairment and disability by recognizing that social barriers are responsible for creating or perpetuating the former) through analysis of science-fictional (SF) models of crip culture. Lukin relies on the work of Phillip K. Dick and Vandana Singh to argue for nuanced perspectives beyond the social model: through the ubiquitous presence of disability in Dick's familial upbringing and literary themes, to Singh's "variation on the Sedgwickian model in which [the inevitability of] shame arises from recognition denied" (p. 237), sci-fi challenges ableist ways of thinking.

Pickens continues literary analysis in the vein of Lukin while drawing parallels to Lewis's discussion on madness (this volume) by exploring the trope of the "mad professor" through Mat Johnson's satirical novel Pym (2012), the story of a Black male professor's tenure denial and the subsequent depressions and accusations of having gone crazy. The purpose of Pickens's examination is twofold: 1) it calls to attention the microaggressions and hostility within the college environment responsible for creating this trope and 2) it reveals ideological stakes within the tenure process. Pickens explores conceptions of madness throughout the novel, especially in terms of racial and ability discrimination.

Vidali concludes this section by studying cyberchondria (the unfounded escalation of concerns about common symptomology based on review of search results and literature online) in a study of student writings at a public university. Due to the highly uninsured population at this institution, Vidali presents an advocacy-oriented approach: one informed by students in a disability rhetoric class in which they study disclosure processes for themselves and for their loved ones, as well as argue tentative diagnoses. By having students identify their own triggers as being a type of disclosure activity, students learn to view the internet as a "space of embodied disclosure" (p. 267).

Institutional Change and Policy

This section opens with Carroll-Miranda, who studies discrimination experiences of students living with disability (SLDWs). Common across experiences were acts of self-disclosure: "how individuals position themselves in relation to their body vis-à-vis society's constructed identity of disability" (p. 277, quoted in Wendell, 1996). SLDWs revealed that determination of services was a daunting process, especially when complying with institutional requisite for disclosure which did not end up "rendering the benefits they thought it would" (2017, p. 285). Strategies for disclosure in postsecondary settings are presented.

Freedman, Eisenman, Grigal, and Hart expand the conversation about disclosure to intellectual disability (ID). The chapter starts by relating academic disclosure for students with ID, such as internalization of stereotypes associated with having — or not having — observable physical differences (such as Down syndrome) and complications emerging from how these are defined and assigned by the institution. Social disclosure issues resulting from interactions of students' goals, program structures, and campus institutions are examined. Policy and practice recommendations that facilitate inclusion of students with ID and address disclosure concerns are identified.

Kerschbaum (one of the authors of this volume), O'Shea, Price, and Salzer report on postsecondary data regarding faculty members' disclosure and negotiation of accommodations for a mental disability. While faculty and students often share some concerns when it comes to disability, such as stigma associated with disclosure, the authors point out that faculty accommodations are handled differently and without consistency across institutions. The authors also question the effectiveness of existing accommodations, positing higher stigma towards mental disabilities. Sustaining a "mutually supportive, interdependent academic unit" (p. 323) to meet these needs is supported as a major goal for institutional policy change.

Rocco and Collins present accommodation communication (AC), a model for the communication process between faculty and students with disabilities in higher education. The AC model, the authors argue, is inherently tied to self-advocacy and self-disclosure and students in higher education are directly responsible for handling accommodation requests. The authors argue that a disability disclosure relationship is akin to "the same forced disclosure the student will have to make to a potential employer" (p. 329). A system intended to equalize the playing field actually creates injustice in academia. Issues and recommendations that address disclosure concerns are identified.

In the concluding chapter, Breneman, Ghiaciuc, Schoolcraft, and Vandeberg draw on Margaret Price's theory of kairotic spaces (2011) by exploring examples of disclosure on campus as residing within kairotic spaces. The chapter matches the conversational style utilized by Carter, Catania, Schmitt, and Swenson (2017, p. 95) in this volume. The authors organize their conversation by describing individual and personal entrance to disability disclosure; encountering campus issues; exploring perspectives and contexts; and articulating campus strategies for creating safe disclosure spaces.

References

  • Garland Thomson, R. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York, NY: Columbia University Press.
  • Goffman, E. (1963). Stigma: Notes on the management of a spoiled identity. New York, NY: Simon & Schuster.
  • hooks, b. (1994). Teaching to transgress: Education as the practice of freedom. New York, NY: Routledge.
  • Johnson, M. (2012). Pym. New York, NY: Spiegel & Grau.
  • Kerschbaum, S.L., Eisenman, L.T. & Jones, J.M. (2017). Negotiating disability: Disclosure and higher education. Ann Arbor, MI: University of Michigan Press. https://doi.org/10.3998/mpub.9426902
  • Price, M. (2011). Mad at school: Rhetorics of mental disability and academic life. Ann Arbor, MI: University of Michigan Press. https://doi.org/10.3998/mpub.1612837
  • Schur, L., Kruse, D., & Blanck, P. (2013). People with disabilities: Sidelined or mainstreamed? New York, NY: Cambridge University Press. https://doi.org/10.1017/CBO9780511843693
  • Stone, Deborah. (1984). The disabled state. Philadelphia, PA: Temple University Press.
  • Wendell, Susan. 1996. The rejected body: Feminist philosophical reflections on disability. New York, NY: Routledge.
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