Barriers and Belonging: Personal Narratives of Disability fills a void in the field of disability studies that editors Michelle Jarman, Leila Monaghan and Alison Quaggin Harkin recognized—an introductory narrative anthology representative of a vast array of embodied disability experiences. Answering the call, the editors have compiled an impressive and important collection of personal disability narratives written by students in the United States and Canada from a diversity of ethnic, religious, class, and cultural backgrounds. These student authors range from those newly acquainted with the sociocultural dimensions of disability to activists deeply familiar with political issues and theory.

“I have long been struck by how much of the literature on disability has focused either on individual experiences or on issues with society at large,” writes Monaghan in the Afterword. “The essays presented in Barriers and Belonging reflect both the tradition of memoirs and wide-scale social activism, but they also show how the recognition of disability as a unique way to experience the world is a crucial part of creating communities and making ‘affirming spaces'” (p. 276).

Importantly, the “voices” and “experiences” in this collection are diverse. Far from monolithic, the thirty-seven personal narratives of disability represented in this anthology show that disability is multifarious in its manifestation. The wide array of disability experience, including traumatic brain injury, blindness, paraplegia, anxiety, chronic pain, bipolar disorder, memory loss, and post-traumatic stress, points to the complex and variable nature of disability as a category of representation. Authors experience impairments that affect form or function of the body or both; are visible or invisible; affect the senses, mobility, or cognitive function; are static or progressive, intermittent or chronic; are congenital or acquired; and moderate or severe in degree. Any of these differences has potentially powerful implications for the way a disability is represented. These representations matter because they shape people’s perceptions of what kinds of disabilities are recognized as legitimate, which ones carry the most stigma, and who is “deserving” of access and accommodations, all of which manifest in political and material ways that affect quality of life for disabled people.

People with disabilities have historically been the object of representations outside of their control. According to G. Thomas Couser, personal narrative as a medium for representation assumes that “disability communities are repositories of lore that elude notice by most nondisabled people” (2009, p. 90). The embodied experience of being disabled in an inaccessible world means that, as a matter of survival, disabled individuals have a unique and morally privileged way of knowing that is inaccessible to those who exist in a world designed to accommodate them. The authors in this anthology are experts of their experience in opposition to modern institutions, namely medicine, that have traditionally claimed expertise over disability. Stories, however, are not simply personal; they are also social and cultural. Personal narratives not only represent and enact experiences of self-understanding and identity formation of disability, they also generate familial and community bonds by integrating linkages in shared experience and newfound comprehension. The result is a source of epistemically rich material for the field of disability studies that prioritizes the fluidity of lived experience over static models and schema.

Each narrative in this anthology represents a short autoethnography written through a frame of critical disability studies. According to Couser, autoethnography is characteristic of disability life-writing aligned with the disability rights movement (2009, p. 91). Written from inside the experience of disability, this postcolonial methodology adheres to one of the major shibboleths of disability studies theory and activism, “Nothing about us without us.” In disability studies, the narrative form of autoethnography has become a popular framework for producing more nuanced and more accurate understandings of embodied experience that reflect the interdependent, interconnected, and contingent nature of disability.

In the Introduction to the anthology, Jarman and Monaghan provide a concise but comprehensive introduction to disability studies and an overview of the book. The thirty-seven narratives, each its own chapter, are loosely grouped into six main parts and are designed to be read in order as each section builds on previously introduced concepts and themes. Each section is preceded by an overview of the narratives contained within and justification for the grouping. The editors emphasize foundational concepts and themes in boldface to emphasize their importance and relevance. At the end of each overview, readers are presented with discussion questions to encourage critical reflection as well as guidance for linking narratives across the book by offering suggestions for related readings.

Part One: Laying the Groundwork focuses on foundational themes in disability studies that echo throughout the book. These include inaccessible spaces, academic institutions and (lack of) accommodations, pervasive ableism, the distinction between visible and invisible disability, as well as the complexity of psychiatric disabilities in the context of the social paradigm of disability. Part Two: Families, Adaptive Living, and Reorienting Expectations examines the ways that family systems shape and inflect understandings of disability. This is the only section to include third-person narratives involving the experience of raising disabled children and the experience of having a disabled sibling. Part Three: Disability and Communication considers the central role communication plays in the presentation of one’s self and examines the complexity of communication in the context of disability. These narratives consider issues such as hearing loss and speech impairments as well as the complexity of communicating invisible disabilities to others. Part Four: Mapping Complex Relations builds on the previous topic of problematic communication and focuses on the ways in which disability informs, challenges, and vitalizes relations with one another. These narratives focus on the ways disability has affected or altered friendships, family relationships, and broader social relations by offering a more nuanced and complicated discussion of the ways in which vulnerabilities, traumas, and a reorientation toward disability shapes relationships with others. Part Five: Identity, Resistance, and Community explores the multiple ways in which disability informs personal identity, social relationships, community affiliations, and political actions. The chapters in this section reveal critical junctures between identity, the resistance of socially imposed labels, and the deep yearning for belonging through community affiliation. Finally, Part Six: Theories and Lives builds on the theoretical insights from earlier chapters to demonstrate the ways that disability studies theories have both influenced and shaped authors’ subjectivity, political involvement, and professional goals. These narratives delve deeper into issues of identity construction, structural ableism, political activism, and psychiatric disabilities from a more scholarly and theoretical perspective.

The overarching theme of this book is reflected in the title: all of the narratives share in common the desire “to expose and dismantle structural barriers and promote meaningful sociopolitical belonging for disabled people” (p. 6; emphasis added). One significant barrier noted by many authors is the experience of being confronted and challenged by observers over their place in the fuzzy borderland between disability and ability. Individuals with anomalous bodies describe being called upon to account for them, and those with invisible impairments recount occasions of having to “prove” their disability to strangers. These social burdens of disability highlight what Jackie Leach Scully (2010) calls the “hidden labor of disability,” or the extra psychological and physical energy involved in managing the discomfort and lack of care of others.

Another prevailing is the progression to a positive disability identity. While most authors narrate embodied histories of indignity, neglect, betrayal, and violence due to their disabilities, many also describe a pivotal awakening and evolution to what Couser calls “disability consciousness” (2009, p. 165). For many, this consciousness developed after exposure to course in disability studies or through participation in disability culture or activism. In the chapter, “Abandoning Normalcy,” Garrett R. Cruzan reflects on how coming to disabilities studies in college produced a revolutionary change in mindset in his disability identity.  He describes a radical transformation from struggling to adapt to life after a spinal cord injury left him paralyzed, to adopting a “crip” identity that celebrates disability as difference. He writes, “I tell people that my impairment has been a gift; I am very lucky to have been given such a unique perspective on life” (p. 157).

The vast majority of narratives continue the pattern of embracing the social-constructionist underpinnings of disability studies, a paradigm that has an uneasy relationship to issues of suffering and desire for a cure. The important exception to this is the chapter by Tasha Chemel called “Bumping into Things While Treading Carefully.” Born into blindness, Chemel wonders if there is room in disability to talk about wanting sight. She tells of her bafflement at the fierce resistance and censure from the blind community for her personal desire to see, writing, “I have not met many other blind people who share my desire for sight, and I worry that the absence of an alternative to the social and medical model sends a message to blind people that it is not safe to talk about their desire for sight” (p. 119). Chemel’s radical challenge to the conventional social model of disability studies is an important step towards encouraging more complex and capacious ways of conceptualizing disability and it would be valuable to see more narratives from authors who are less palatable politically (e.g., those who complain, express bitterness, or limitations about the fact of being disabled) in the future.

Barriers and Belonging is one of those rare books geared toward a specialized academic audience that still manages to speak to a much broader readership. Jarman, Monaghan, and Quaggin Harkin have crafted an accessible, if still rigorous, introduction to disability studies that appeals beyond the narrow scholarly stream to include a range of practitioners and advocates working in the disability field, as well as disabled people themselves. Narratives that highlight issues of disability experience and identity can provide disabled people and their families, friends, and caretakers, and non-disabled people with a resource for understanding and learning from the personal embodied experience of disability. Such first-person testimony promotes appreciation for the common and unique factors that shape the experience of disability. Because personal disability narratives can counter the too often moralizing, objectifying, pathologizing, and marginalizing representations of disability in contemporary culture, they offer an important entrée for inquiry into one of the fundamental aspects of human diversity.

 

 

References

Couser, G. Thomas. Signifying Bodies: Disability in Contemporary Life Writing. Ann Arbor: University of Michigan Press, 2009.

Scully, Jackie Leach. “Hidden Labor: Disabled/Nondisabled Encounters, Agency and Autonomy.” International Journal of Feminist Approaches to Bioethics 3, no. 2 (2010): 25-42.

 

© 2018 Anna K. Swartz

 

Anna K. Swartz, Michigan Technological University