Redefining Disability


The reality of disability—of what it means to be disabled—has primarily been written by non-disabled people. Disability and disabled individuals are often described with pity, presented as burdens, or are background figures in larger non-disabled narratives. Redefining Disability challenges the outsider-dominated approach to disability by centering the disabled experience.

This edited volume, featuring all disabled authors and creators, combines traditional academic works with personal reflections, visual art, and poetry. These works address disability and race, sexuality and disability, disability cultures, accommodation, self-diagnosis, and how we manage the obstacles ableist institutions place in our way. The authors address a variety of disabilities, including sensory, chronic pain, mobility, developmental disorders, and mental illness. It is through these testimonies that we hope to redefine disability on our terms; to clearly state that disability is not a bad word, and that all disabled lives have value.

Redefining Disability is interdisciplinary, with broad application for undergraduate courses, graduate seminars, or to read for pleasure. Each entry contains discussion questions and/or activities for educators to use in the classroom.

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Paul D. C. Bones, Ph.D. (2015), University of Oklahoma, is Assistant Professor of Sociology at Texas Woman’s University. He has published articles and book chapters on disability, hate crime, and criminology. This includes a recent article on access and accommodation during COVID-19 published in Socius (2021).

Jessica Smartt Gullion, Ph.D. (2002), Texas Woman's University, is the Associate Dean of the College of Arts and Sciences and Associate Professor of Sociology at that university. She has published extensively in medical sociology and qualitative research methodology, including the award-winning Diffractive Ethnography: Social Sciences and the Ontological Turn (Routledge, 2018).

Danielle Barber, M.S. (2018), Texas Woman's University, is a doctoral candidate in Sociology at that university. She conducts research on health and illness and on disability.
Praise for Redefining Disability:
Redefining Disability offers a unique and vivid combination of lucid explanations and evocative accounts. Featuring essay, narrative, poetry, and photography, this outstanding collection opens a creative window into the richness of disabled experience and calls out systemic ableism that radically diminishes the lives of disabled folks. This provocative, insightful book is essential reading for anyone committed to the work of inclusivity, diversity, equity, and access. - Laura L. Ellingson, PhD, Patrick A. Donohoe, S.J. Professor of Communication, Santa Clara University and author of Embodiment in Qualitative Research

Redefining Disability brilliantly takes readers on a tour through disabled people's lives. It skillfully talks frankly and directly to readers through a delightful array of short and pithy chapters covering expansive topics such as disability and pets, the COVID-19 pandemic, disclosure in higher ed, and being chronically ill. There are photographs and poems, short essays and longer ones. It’s at times emotionally raw and other times fun. To make this book extra-teachable, each chapter ends with discussion questions. A celebration of the act of telling disabled people’s stories, Redefining Disability is a must-read. - Laura Mauldin, PhD, NIC, Associate Professor at the University of Connecticut and author of Made to Hear: Cochlear Implants and Raising Deaf Children

Redefining Disability is a collection 100% shaped by disabled people, not just through the individual chapters and the perspectives contained in the book, but all the way through editing and indexing. The book takes aim at ableism and discrimination against disabled people through critique, with humour, with powerful imagery and art, with indelible writing, and does so from a diverse range of perspectives. But the book, its authors and editors, are also very intentional about accessibility, modeling the values it promotes with a clear and engaging introduction, through plain language and careful explanations and definitions, and with terrific discussion questions. The result is a book that could be taught in high school, College or University, but also is distinctly non-academic in its appeal. Redefining Disability captures and conveys disability culture and community more successfully, accessibly, and compellingly than any other book you could pick up. - Jay Dolmage, PhD, Professor of English, University of Waterloo and author of Academic Ableism: Disability and Higher Education and the founding editor of the Canadian Journal of Disability Studies.
Notes on Contributors

Paul D. C. Bones, Jessica Smartt Gullion and Danielle Barber

1 Existing in a Mortal Form and Other Disabling Experiences
E. J. K. Brimner and R. McGuire
2 Disabled Humans and Our Non-Human Animal Companions
Paul D. C. Bones

Pet Profile: Charlie
Aparna Nair
3 Disability Discourse Stuck in a Black/White Binary: Embodying a Black and Disabled Identity as a Mixed-Race Person
Cassandra Lovelock
4 Plum Tomato: Solanum lycopersicum
Ellen Samuels
5 Disability Aesthetics: A Crip Artistry Manifesto
Aurora Berger
6 Life on the Line
Aurora Berger
7 Finding My Way in a Society Where I Don’t Fit
Jill Richardson

Pet Profile: Mac
Valerie and Chase Novack
8 Misfit in the Academy: Succeeding as a Visually Impaired Scholar in Australia
Sheelagh Daniels-Mayes

Pet Profile: Mudkip
9 Justice vs. Injustice: Poetic Dialogue about the Meaning of Disability Justice among People Labelled/with Intellectual Disability
Anonymous, Anonymous, Anonymous, Nicholas Herd, Anonymous, Doreen Kalifer, with support from Erin Kuri and Ann Fudge Schormans
10 Inspiration Porn and Desperation Porn: Disrupting the Objectification of Disability in Media
Kara B. Ayers and Katherine A. Reed

Pet Profile: Scribbles
Melanie Coughlin
11 Tap Tap Tap
Marie Gagnon
12 Adaptation from the Margins: Toward a Crip Theatre
Christopher Bryant

Pet Profile: Pepper
13 Diagnosis Limbo
Danielle Barber

Pet Profile: Luther & Layla
Danielle Barber
14 Successful Sad
Vanessa Ellison

Pet Profile: Monkey
Emily Dall’Ora Warfield
15 Ddeaf Adjacency: Liminal Conditions of Not Hearing
Megan Marshall
16 S-I-L-I-C-O-N-E Inject-Ear | Silicone Injections: In American Sign Language (ASL) Gloss and English
Raymond Luczak
17 Utensils and Fire
Jessica Spears Williams
18 Seeing Brains: Shakespeare, Autism, and Self-Identification
Nicholas R. Helms

Pet Profile: Pike Trickleg
Lauren (aka L.W. Salinas)
19 Hot Girl Bummer: Achieving Disabled Sexual Liberation in an Ableist World
Katherine O’Connell

Pet Profile: Abacus
Kimberly C. Merenda
20 Selected Poems
Jessi Aaron

Pet Profile: Opal, Orbit, & Ruby
Aubree Evans
21 Maybe Do Talk to Strangers on the Internet? An Interview with Corin de Parsons Frietas
Corin Parsons de Frietas (with Paul D. C. Bones)

Pet Profile: Finn & Bear
Corin Parsons de Freitas
22 Finding Empowerment in the Middle: Navigating Hidden Disabilities in Academia
Summer M. Jackson

Pet Profile: Rocko (More Formally Known as Rocko Taco)
Summer M. Jackson
23 Taking Center Stage in the Face of Shame and Scars
Jasmine (Jaz) Gray

Pet Profile: Aisling & Truthe
Jennifer Stahl
24 Assistive Tech, Assertive Tech
Cole Sorensen
25 Modern Day Changelings: On Being an Autistic Parent of an Autistic Child
Alison Kelly
26 Stone, Water, Land, Spine
Elizabeth Glass

Pet Profile: Maximus Aurelius Gullion, Guardian of the Realm, Slayer of Demons, Friend to Unicorn and Dragon, Defender of Squeaky Toys & Spartacus the Mighty
Jessica Smartt Gullion
27 Cancer Isn’t Like a Movie, But If It Was It’d Be a Horror Flick
Terri Juneau Eklund

Pet Profile: Bacon & Pancake
Terri Juneau Eklund
28 “It’s Meant to Be a Hazing Process”: Deciphering Ableism Surrounding Academic Accommodations
Corey Reutlinger

Pet Profile: Captain Jack Harkness & Pippa Millicent Tiny Panther
Tara Elliot
29 Night of the Living Ableds: Disability, Representation, and Horror Film
Paul D. C. Bones

Pet Profile: Mildred Sausage, Allan Hamsteak, & Inara Bacon
Paul D. C. Bones
30 A Bright Green: After Lou Ferrigno, A Deaf Bodybuilder Who Played the Incredible Hulk (1977–1982)
Raymond Luczak
31 Manifesto
 The Committee for the Sick and Useless
Anyone interested in disability studies, including both academic and non-academic audiences. This book could be used in either undergraduate or graduate courses in disability studies or as a supplementary text in related areas.
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