New Books in Disability Studies

During the COVID pandemic, billions of dollars in relief aid was sent out to help us ride out the storm, although many people who struggled through it might scratch their heads at such a number, having seen little of it make any concrete impact in their own lives. This discrepancy is indicative of the underlying problem with the contemporary care economy, a series of federal and state programs, healthcare facilities and NGO’s, all trying to bend the needs of those under their care to the mechanisms and incentives laid out by capitalism. The result is a massive apparatus that regularly fails to fulfill its supposed intentions, leaving workers and those in need of help in precarious and often dangerous situations. 

This apparatus is untangled and explained in clear detail by Premilla Nadasen in her book Care: The Highest Stage of Capitalism (Haymarket Books, 2023). Informed by both her work as a historian and as a political activist, she manages to untangle and explain why the massive apparatus regularly fails to fulfill its purpose. She also outlines offramps, forms of resistance that workers and activists have taken to develop alternative anticapitalist forms of care that might someday allow us to truly flourish together.

Premilla Nadasen is a professor of history at Barnard College, Columbia University. She is the co-director of the Barnard Center for Research on Women. She is also the author of Welfare Warriors: The Welfare Rights Movement in the United States and Household Workers Unite: The Untold Story of African American Women Who Built a Movement.

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What does an inclusive society look like? And what are the challenges and opportunities when the society in question, Timor-Leste, is one of the most resource-constrained in Southeast Asia? My guest today is interested in these questions of inclusion and participation, and argues that people with a disability are a key component of a truly inclusive society – and that employment can be a key policy lever for inclusion. With Timor-Leste recently ratifying the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), now is the time, she says, for building an evidence base for employment as a foundational right that has transformational potential not only for people with disability but for the broader community.

Dr Kim Bulkeley from the Faculty of Medicine and Health joins Dr Natali Pearson to share the work she is doing ion disability and work in Timor-Leste. Dr Kim Bulkeley is a Co-head of the WHO Collaborating Centre for strengthening rehabilitation capacity in health systems, senior lecturer in the Sydney School of Health Sciences and a stream leader in the Centre for Disability Research and Policy.

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A powerful analysis and call to action that reveals disability as one of the defining features of environmental devastation and resistance.

Deep below the ground in Tucson, Arizona, lies an aquifer forever altered by the detritus of a postwar Superfund site. Disabled Ecologies: Lessons from a Wounded Desert (U California Press, 2024) tells the story of this contamination and its ripple effects through the largely Mexican American community living above. Drawing on her own complex relationship to this long-ago injured landscape, Sunaura Taylor takes us with her to follow the site's disabled ecology—the networks of disability, both human and wild, that are created when ecosystems are corrupted and profoundly altered.

What Taylor finds is a story of entanglements that reach far beyond the Sonoran Desert. These stories tell of debilitating and sometimes life-ending injuries, but they also map out alternative modes of connection, solidarity, and resistance—an environmentalism of the injured. An original and deeply personal reflection on what disability means in an era of increasing multispecies disablement, Disabled Ecologies is a powerful call to reflect on the kinds of care, treatment, and assistance this age of disability requires.

A full transcript of the interview is available for accessibility.

Sunaura Taylor is an Assistant Professor in the Division of Society and Environment at the University of California, Berkeley. Taylor is a scholar and artist who works at the intersection of disability studies, environmental humanities, animal studies, environmental justice, feminist science studies, and art practice.

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In Crip Colony: Mestizaje, US Imperialism, and the Queer Politics of Disability in the Philippines (Duke UP, 2023), Sony Coráñez Bolton examines the racial politics of disability, mestizaje, and sexuality in the Philippines. Drawing on literature, poetry, colonial records, political essays, travel narratives, and visual culture, Coráñez Bolton traces how disability politics colluded with notions of Philippine mestizaje. He demonstrates that Filipino mestizo writers in the late nineteenth and early twentieth centuries used mestizaje as a racial ideology of ability that marked Indigenous inhabitants of the Philippines as lacking in civilization and in need of uplift and rehabilitation. Heteronormative, able-bodied, and able-minded mixed-race Filipinos offered a model and path for assimilation into the US empire. In this way, mestizaje allowed for supposedly superior mixed-race subjects to govern the archipelago in collusion with American imperialism. By bringing disability studies together with studies of colonialism and queer-of-color critique, Coráñez Bolton extends theorizations of mestizaje beyond the United States and Latin America while considering how Filipinx and Filipinx American thought fundamentally enhances understandings of the colonial body and the racial histories of disability.

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Measurements, and their manipulation, have been underestimated as crucial historical forces motivating and guiding the way we think about disability.

Using measurement technology as a lens, and examining in particular the measurement of hearing and breathing, Coreen McGuire's book Measuring Difference, Numbering Normal: Setting the Standards for Disability in the Interwar Period (Manchester UP, 2020) draws together several existing discussions on disability, phenomenology, healthcare, medical practice, big data, embodiment, and emerging medical and scientific technologies around the turn of the twentieth century. These are popular topics of scholarly attention but have not, until now, been considered as interconnected topics within a single book. As such, this work connects several important, and usually separate academic subject areas and historical specialisms. The standards embedded in instrumentation created strict, but, ultimately arbitrary thresholds of what is categorised as normal and abnormal. Considering these standards from a long historical perspective reveals how these dividing lines shifted when pushed.

This book is available open access here. 

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In Crip Spacetime: Access, Failure, and Accountability in Academic Life (Duke University Press, 2024), Margaret Price intervenes in the competitive, productivity-focused realm of academia by sharing the everyday experiences of disabled academics. Drawing on more than three hundred interviews and survey responses, Price demonstrates that individual accommodations--the primary way universities address accessibility--actually impede access rather than enhance it. She argues that the pains and injustices encountered by academia's disabled workers result in their living and working in realities different from nondisabled colleagues: a unique experience of space, time, and being that Price theorizes as "crip spacetime." She explores how disability factors into the exclusionary practices found in universities, with multiply marginalized academics facing the greatest harms. Highlighting the knowledge that disabled academics already possess about how to achieve sustainable forms of access, Price boldly calls for the university to move away from individualized models of accommodation and toward a new system of collective accountability and care.

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Mimi Khúc is a PhD, writer, scholar, and teacher of things unwell. She is currently the Co-Editor of The Asian American Literary Review and an adjunct lecturer in Disability Studies at Georgetown University. Her work includes Open in Emergency, a hybrid book-arts project decolonizing Asian American mental health; the Asian American Tarot, a reimagined deck of tarot cards; and the Open in Emergency Initiative, an ongoing national project developing mental health arts programming with universities and community spaces. 

Her new creative-critical, genre-bending book on mental health and a pedagogy of unwellness, dear elia: Letters from the Asian American Abyss (Duke University Press, 2024), is a journey into the depths of Asian American unwellness at the intersections of ableism, model minoritization, and the university, and an exploration of new approaches to building collective care.

Julia H. Lee is professor of Asian American Studies at the University of California, Irvine. She is the author of three books: Interracial Encounters: Reciprocal Representations in African and Asian American Literatures, 1896-1937 (New York University Press, 2011), Understanding Maxine Hong Kingston (University of South Carolina Press, 2018), and The Racial Railroad (New York University Press, 2022). With Professor Josephine Lee, she is co-editor of Asian American Literature in Transition, 1850-1930 (Cambridge University Press, 2021), a Choice Outstanding Academic Title for 2022. You can find her on Instagram @julia.x.lee.

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The use of disability as a metaphor is ubiquitous in popular culture – nowhere more so than in the myths, stereotypes and tropes around blindness. To be 'blind' has never referred solely to the inability to see. Instead blindness has been used as shorthand for, among other things, a lack of understanding, immorality, closeness to death, special insight or second sight. Although these 'meanings' attached to blindness were established as early as antiquity, readers, receivers and spectators into the present have been implicated in the stereotypes, which persist because audiences can be relied on to perpetuate them. 

Marchella Ward's book Blindness and Spectatorship in Ancient and Modern Theatres: Towards New Ways of Looking and Looking Back (Cambridge UP, 2023) argues for a new way of seeing – and of understanding classical reception - by offering assemblage-thinking as an alternative to the presumed passivity of classical influence. And the theatre, which has been (incorrectly) assumed to be principally a visual medium, is the ideal space in which to investigate new ways of seeing.

Corinne Doria is a historian specializing in the social history of medicine. She is a lecturer at the Chinese University of Hong Kong in Shenzhen and teaches Disability Studies at Sciences-Po (Paris). Her work focuses on the history of ophthalmology and visual impairment in the West.

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Vulnerable narratives of fatherhood are few and far between; rarer still is an ethnography that delves into the practical and emotional realities of intensive caregiving. Grounded in the intimate everyday lives of men caring for children with major physical and intellectual disabilities, Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities (U California Press, 2021) undertakes an exploration of how men shape their identities in the context of caregiving. Anthropologist Aaron J. Jackson fuses ethnographic research and creative nonfiction to offer an evocative account of what is required for men to create habitable worlds and find some kind of “normal” when their circumstances are anything but. Combining stories from his fieldwork in North America with reflections on his own experience caring for his severely disabled son, Jackson argues that care has the potential to transform our understanding of who we are and how we relate to others.

Aaron J. Jackson is a Lecturer in Anthropology at Victoria University. His research focuses on fatherhood, care, and disability.

Alize Arıcan is a Postdoctoral Associate at Rutgers University's Center for Cultural Analysis. She is an anthropologist whose research focuses on urban renewal, futurity, care, and migration in Istanbul, Turkey. Her work has been featured in Current Anthropology, City & Society, Radical Housing Journal, and entanglements: experiments in multimodal ethnography.

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Matthew Rubery's book Reader’s Block: A History of Reading Differences (Stanford UP, 2022) explores the influence neurodivergence has on the ways individuals read. This alternative history of reading is one of the few books which tells the stories of "atypical" readers and the impact had on their lives by neurological conditions affecting their ability to make sense of the printed word: from dyslexia, hyperlexia, and alexia to synesthesia, hallucinations, and dementia. Rubery's focus on neurodiversity aims to transform our understanding of the very concept of reading. Drawing on personal testimonies gathered from literature, film, life writing, social media, medical case studies, and other sources to express how cognitive differences have shaped people's experiences both on and off the page, Rubery contends that there is no single activity known as reading. Instead, there are multiple ways of reading (and, for that matter, not reading) despite the ease with which we use the term. Pushing us to rethink what it means to read; Reader's Block moves toward an understanding of reading as a spectrum that is capacious enough to accommodate the full range of activities documented in this fascinating and highly original book.

Matthew Rubery is Professor of Modern Literature at Queen Mary University of London. His earlier books include The Novelty of Newspapers: Victorian Fiction after the Invention of the News (Oxford, 2009) and The Untold Story of the Talking Book (Harvard University Press, 2016). He has also edited or co-edited Audiobooks, Literature, and Sound Studies (Routledge, 2011), Secret Commissions: An Anthology of Victorian Investigative Journalism (Broadview, 2012), and Further Reading (Oxford, 2020). Currently, he is working on a history of “projected reading”, a form of assisted reading that involves projecting books on ceilings which a patient can read while lying in bed. This was first used to help World War 2 soldiers injured on duty who could not read conventionally. Matthew also likes to collaborate with charities and other organisations to think about ways of reading more suited to people with disabilities or neurodivergent readers.

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