Inaccessible Access

Rethinking Disability Inclusion in Academic Knowledge Creation

Edited by Kelly Fagan Robinson, Mark T. Carew, and Nora Ellen Groce; Illustrated by Indigo Ayling; Introduction by Kelly Fagan Robinson; Preface by Mark T. Carew; Afterword by Michele Friedner

Rutgers University Press

Inaccessible Access ethnographically addresses barriers to inclusion within knowledge-making. It focuses on the social, environmental, communicative, and epistemological barriers that people with disabilities confront and embody throughout the course of their learning and living and in the specific context of their higher education institutions and in research. It is presented by a neurodiverse, disabled, and non-cis cohort of authors, all of whom acknowledge a continuum of (in)access that is available to each contributor contingent on their inherent intersectionalities and alterities. The authors and editors of this book foreground the work that has yet to be done on recognizing the value of nonnormative ways of approaching, being in, and knowing research and higher education, particularly in cases where disablity-centered epistemologies are sidelined in confrontation with institutional norms, even within existing discourses concerning equality and alterity.

With ethnographic detail and theoretical rigor, Inaccessible Access makes an essential contribution to critical access studies, showing that disability inclusion, equity, and justice are much more complicated than legal regimes make them out to be. A must-read for students, faculty, and administrators in higher education. Aimi Hamraie, author of Building Access: Universal Design and the Politics of Disability

As universities charge their offices of disability services with the challenge of advising instructors on reasonable educational accommodations, too often disabled students experience a yawning gap between what is provided and what they actually need. Inaccessible Access thoughtfully and wisely enters into that gap, or those many gaps, to explore, document, and problematize the complex terrain. This book launches a much-needed conversation about how universities can better accept, value, and support disabled students. Scot Danforth, editor of Becoming a Great Inclusive Educator

KELLY FAGAN ROBINSON is a Leverhulme Early Career Research Fellow and an affiliate lecturer in the Department of Social Anthropology at the University of Cambridge.

MARK T. CAREW is an assistant professor at the International Centre for Evidence in Disability at the London School of Hygiene and Tropical Medicine. He is a coauthor of Disability and Sexual Health: A Critical Exploration of Key Issues and coeditor of Physical Disability and Sexuality: Stories from South Africa.

NORA ELLEN GROCE is the Leonard Cheshire Chair of Disability and Inclusive Development at University College London. She is the author of Everyone Here Spoke Sign Language: Hereditary Deafness on Martha's Vineyard and a coauthor of Accessible Connecticut: A Guide to Recreation for Children with Disabilities and Their Families.

Preface
Mark T. Carew

Introduction
Kelly Fagan Robinson

1. Blended Models and the Co-Construction of Hidden Disability in Higher Education Settings
Carol Rivas

2. Performing Normal: Deafness, Intersectionality, and Academic Exhaustion
Julia F. Sauma

3. Making Space for Chronicity: Financial and Administrative Barriers to PhD Study
for People with Long-Term Health Conditions in the United Kingdom
Julia Modern

4. Agency and Subjectification in the Management of People with Disabilities: Inclusion of a Young
Man Diagnosed with Autism in the Labor Market
Valeria Aydos

5. Against Frictionless Access to Fieldwork: An Ethnography of Audio Describing Virtual Reality
Harshadha Balasubramanian

6. Video Meetings: Access and Disrupture
Rebekah Cupitt, Sara M. Acevedo, Sumi Colligan, Valerie Black, Mark Bookman, Erin L. Durban, Nell Koneczny, and Krisjon Olson

7. Access Killjoys: Join the Club
Michele Friedner

Acknowledgments

Notes on Contributors

Index

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