A collection of personal narratives that asks, Why does disability studies matter?
Barriers and Belonging
Personal Narratives of Disability
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Edited by Michelle Jarman, Leila Monaghan, and Alison Quaggin Harkin
"Barriers and Belonging covers a wide range of topics yet remains coherent as a collection. It touches on many of the important discussions currently animating the field and includes topics rarely discussed in disability studies, such as the experiences of people in rural settings and the role of religious faith in people's lives. This book will shift students' understandings of disability, catalyze disability organizing on campus, and re-orient pedagogy and curricula."
—Alison Kafer, Professor of Feminist Studies at Southwestern University, and author of Feminist, Queer, Crip
What is the direct impact that disability studies has on the lives of disabled people today? The editors and contributors to the essential anthology, Barriers and Belonging, provide thirty-seven personal narratives that explore what it means to live with disability and why the field of disability studies matters. Every chapter includes key terms, discussion questions, and suggestions for further reading.
Barriers and Belonging explores how disability informs self-knowledge, interpersonal and community relationships, and political commitments. Contributors offer experiential insight into living with an array of disabilities, from spinal cord injuries, blindness, deafness, and autism to psychiatric diagnoses, learning disabilities, and chronic pain. Several essays articulate activist and pride orientations toward disability, demonstrating the importance of understanding disability as a multi-dimensional process—as personal, relational and socio-political.
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Read the Introduction (pdf).
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"Barriers and Belonging is a hugely important volume—the first of its kind. As an original book that involves a synthesis of literatures and arguments, it offers an incredible range of diversity, experiences, and voices. One of its greatest strengths is how truly student-friendly it is. The focus on personal experience is notable, and the contributors explore many facets of the overall disability experience. I am very excited about the possibilities for this volume!"
—Brenda Jo Brueggemann, Professor of English and Aetna Endowed Chair of Writing at the University of Connecticut, and author of Deaf Subjects: Between Identities and Places
"A common thread of many of the (contributors') essays is how their personal experiences with disability in college led them to accept a disability identity and ultimately into activism.... (E)ach section of the book has worked to include a wide representation of disability.... The purpose of the book (is) as a teaching tool.... It allows readers to see the progression of thought by which someone might move from little understanding or from an insecurity about their own disability, into a role in which advocacy—either through action or academics—might become a central part of their lives...each of these essays is well worth reading."
"Barriers and Belonging is much more than a textbook: it's an eye-opening collection of lives, told with honesty and moving candor. The narratives, which are organized into sections around themes such as communication, family and relationships, are engaging and short, allowing room for many different points of view.... The writers lead us up to the moment their conception of their disability changes in some way. The ways are as varied as the disabilities themselves, which range from acquired conditions such as PTSD and chronic pain, to congenital conditions such as cerebral palsy and Down Syndrome, to mental health and cognitive conditions."
—intima: a journal of narrative medicine
"This book is a meaningful contribution to the body of materials for courses that address individual and group differences. The text could be an excellent complement to other course materials in a survey or introductory level course. Its style of personal narratives will appeal to students because they are brief.... These narratives are also intensely honest and personal. For those who have never considered the impact of non-visible disabilities, this text is an eye opener. After reading this volume, it is unlikely that readers would ever respond to another person with the casual saying, but you don't have a disability. As a resource for courses in disability studies or human diversity, Barriers and Belonging presents a fresh perspective."
—Teachers College Record
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Introduction: Entering the Field / Michelle Jarman and Leila Monaghan
PART I LAYING THE GROUNDWORK
I.1. From Poison Ivy to Live Oak: How Transferring Colleges Changed My Perception of Disability / Alyse Ritvo
I.2. Speaking Madness / Shayda Kafai
I.3. Transitioning from One Culture to Another / Anmol Bhatia
I.4. Growing Up with ADHD / Joshua Phelps
I.5. Disability and Sports / Christopher Weingardt
I.6. Contours of Ableism and Transforming a Disabled Life / Zachary A. Richter
I.7. I Can Dance! / Suzi Vee
PART II FAMILIES, ADAPTIVE LIVING, AND REORIENTING EXPECTATIONS
II.1. Life Given and Memory Lost / Mycie Lubin
II.2. Beating the Odds: Life with an Invisible and Chronic Disability / Elizabeth Allyn Campbell
II.3. Benjamin Is Benjamin / Joanne De Simone
II.4. Conversation with a Mother and Son: An Interview/ Tricia Black, Michael Black, and Leila Monaghan
II.5. Taking Disability One Stage at a Time (unless They Attack You All at Once) / Christina Spence
II.6. My Brother’s Traumatic Brain Injury and Its Effect on Me / Douglas Kidd
PART III DISABILITY AND COMMUNICATION
III.1. Voicing Disability with Disabled Voices: Reimagining a Stuttered Identity / Joshua St. Pierre
III.2. Fibromyalgia Syndrome / Catherine Graves
III.3. ASL in a Hearing World / Blake Culley
III.4. Bumping into Things while Treading Carefully: On Narrative, Blindness, and Longing for Light/ Tasha Chemel
III.5. What I Wish You Would Ask: Conversations about Cerebral Palsy / Leigh A. Neithardt
III.6. Take a Second Look / Leslie Johnson Elliott
PART IV MAPPING COMPLEX RELATIONS
IV.1. My Name is Anna / Anna Roach
IV.2. Living Blind / Caitlin Hernandez
IV.3. Shades of Shame / Emily K. Michael
IV.4. Abandoning Normalcy / Garret R. Cruzan
IV.5. A Quiet Conflict: Post-traumatic Stress Disorder / Michael T. Salter
IV.6. Brother and Sister in Arms / Rachel Anderson
PART V IDENTITY, RESISTANCE, AND COMMUNITY
V.1. Disability, Belonging, Pride / Allegra Heath-Stout
V.2. Deconstructing “Accessible” Education in Academia / Nancy La Monica
V.3. Fake It until You Make It (or until You Find Your Place) / Megan L. Coggins
V.4. My Anxiety / Susan Macri
V.5. Disability, the Lure of Escapism, and Making the Invisible Visible / Suzanne Walker
V.6. Discovering My Deaf Identity / Denton Mallas
PART VI THEORIES AND LIVES
VI.1. Taking Great Pains with Disability Theory / Adena Rottenstein
VI.2. Medicating My Socially Constructed Disability / Cindee Calton
VI.3. Flourishing with Polio: A Spiritual, Transformational, and Disability Studies Perspective / Rodney B. Hume-Dawson
VI.4. Learning to See Myself in the Mirror / Adam P. Newman
VI.5. Writing Myself into Madness and Disability Studies / Rebekah Moras
VI.6. Autism Isn’t Speaking: Autistic Subversion in Media and Public Policy / Lydia X. Z. Brown
Afterword: Negotiating the Future / Leila Monaghan
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About the Author(s)
Michelle Jarman is Associate Professor of Disability Studies, Wyoming Institute for Disabilities at the University of Wyoming.
Leila Monaghan is Lecturer in Anthropology at Northern Arizona University.
Alison Quaggin Harkin is Temporary Assistant Lecturer of Disability Studies, Gender and Women's Studies, and English at the University of Wyoming.
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