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The long-awaited essay collection from one of the most influential voices in disability activism that detonates a bomb in our collective understanding of care and illness, showing us that sickness is a fact of life.
In the wake of the 2014 Ferguson riots, and sick with a chronic condition that rendered them housebound, Johanna Hedva turned to the page to ask: How do you throw a brick through the window of a bank if you can't get out of bed? It was not long before this essay, "Sick Woman Theory", became a seminal work on disability, because in reframing illness as not just a biological experience but a social one, Hedva argues that under capitalism--a system that limits our worth to the productivity of our bodies--we must reach for the revolutionary act of caring for ourselves and others.
How to Tell When We Will Die: On Pain, Disability, and Doom (Zando-Hillman Grad Books, 2024) expands upon Hedva's paradigm-shifting perspective in a series of slyly subversive and razor-sharp essays that range from the theoretical to the personal--from Deborah Levy and Susan Sontag to wrestling, kink, mysticism, death, and the color yellow. Drawing from their experiences with America's byzantine healthcare system, and considering archetypes they call The Psychotic Woman, The Freak, and The Hag in Charge, Hedva offers a bracing indictment of the politics that exploit sickness--relying on and fueling ableism--to the detriment of us all.
With the insight of Anne Boyer's The Undying and Leslie Jamison's The Empathy Exams, and the wit of Samantha Irby, Hedva's debut collection upends our collective understanding of disability. In their radical reimagining of a world where care and pain are symbiotic, and our bodies are allowed to live free and well, Hedva implores us to remember that illness is neither an inconvenience or inevitability, but an enlivening and elemental part of being alive.
Johanna Hedva (they/them) is a Korean American writer, artist, and musician from Los Angeles. Hedva is the author of the essay collection How To Tell When We Will Die: On Pain, Disability, and Doom, published September 2024, by Hillman Grad Books. They are also the author of the novels Your Love Is Not Good and On Hell, as well as Minerva the Miscarriage of the Brain, a collection of poems, performances, and essays. Their albums are Black Moon Lilith in Pisces in the 4th House and The Sun and the Moon. Their work has been shown in Berlin at Gropius Bau, Haus der Kulturen der Welt, Klosterruine, and Institute of Cultural Inquiry; in Los Angeles at JOAN, HRLA, in the Getty’s Pacific Standard Time, and the LA Architecture and Design Museum; The Institute of Contemporary Arts in London; Performance Space New York; Buk-Seoul Museum of Art and Gyeongnam Art Museum in South Korea; the 14th Shanghai Biennial; Migros Museum für Gegenwartskunst in Zürich; Modern Art Oxford; Museum of Modern and Contemporary Art of Bolzano; the Museum of Contemporary Art on the Moon; and in the Transmediale, Unsound, Rewire, and Creepy Teepee Festivals. Their writing has appeared in Triple Canopy, frieze, The White Review, Topical Cream, Spike, Die Zeit, and is anthologized in Whitechapel: Documents of Contemporary Art. Their essay “Sick Woman Theory,” published in 2016, has been translated into 11 languages.
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Peoples & Things host, Lee Vinsel, talks with Meryl Alper, Associate Professor of Communication Studies at Northeastern University, about her recent book, Kids Across the Spectrums: Growing Up Autistic in the Digital Age (MIT Press, 2023). In addition to being a professor, Alper is also an educational researcher who has worked over the past 20 years to make inclusive and accessible learning products with media organizations such as Sesame Workshop, Nickelodeon, and PBS KIDS. Vinsel and Alper talk about disability studies, the nature of Alper’s empirical work, the arc of Alper’s career, including her future projects.
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Fitter, Happier: The Eugenic Strain in Twentieth-Century Cancer Rhetoric (U Alabama Press, 2024) is a thought-provoking exploration of the relationship between cancer rhetoric, American ideals, and eugenic influences in the twentieth century. This groundbreaking work delves into the paradoxical interplay between acknowledging the genuine threat of cancer and the ingrained American ethos of confidence and control.
Agnew's meticulous research traces the topic's historical context, unveiling how cancer discourses evolved from a hushed personal concern to a public issue thanks to the rise of cancer research centers and advocacy organizations. However, she unearths a troubling dimension to these discussions--subtle yet persistent eugenic ideologies that taint cancer arguments and advocacy groups. By dissecting prevailing cancer narratives, Agnew brings into focus how ideals rooted in eliminating imperfections and embracing progress converge with concerns for safeguarding societal fitness.
Fitter, Happier scrutinizes the military origins and metaphors that permeate government policies and medical research, the transformation of cancer's association with melancholy into a rallying cry for a positive outlook, and the nuanced implications of prevention-focused dialogues. Reflecting on the varied experiences of actual cancer patients, Agnew resists the neat assimilation of these stories into a eugenic framework. Agnew's insights prompt readers to contemplate the societal meanings of disease and disability as well as how language constructs our shared reality.
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Peoples & Things host, Lee Vinsel, talks to Raquel Velho, Associate Professor of Science and Technology Studies at Rensselaer Polytechnic Institute, about her recent book, Hacking the Underground: Disability, Infrastructure, and London's Public Transport System (U Washington Press, 2023). Hacking the Underground provides a fascinating ethnographic investigation of how disabled people navigate a transportation system that is far from accessible.
Velho finds disabled passengers constantly hacking and finding workarounds, including lots of fix-y maintenance tasks, to get from one place to another. While these workarounds involve obvious creativity, they are also the products of an unequal system and the failure to enact a more-thoroughgoing and radically-transformative redesigning of public transportation systems in the name of accessibility. Vinsel and Velho also touch on a wide range of other topics, including issues of theory and method, and they talk about what Velho is up to next.
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In Menace to the Future: A Disability and Queer History of Carceral Eugenics (Duke UP, 2024), Jess Whatcott traces the link between US disability institutions and early twentieth-century eugenicist ideology, demonstrating how the legacy of those ideas continues to shape incarceration and detention today. Whatcott focuses on California, examining records from state institutions and reform organizations, newspapers, and state hospital museum exhibits. They reveal that state confinement, coercive treatment, care neglect, and forced sterilization were done out of the belief that the perceived unfitness of disabled, mad, and neurodivergent people was hereditary and thus posed a biological threat—a so-called menace to the future.
Whatcott uncovers a history of disabled resistance to these institutions that predates disability rights movements, builds a genealogy of resistance, and tells a history of eugenics from below. Theorizing how what they call “carceral eugenics” informed state treatment of disabled, mad, and neurodivergent people a century ago, Whatcott shows not only how that same logic still exists in secure treatment facilities, state prisons, and immigration detention centers, but also why it must continue to be resisted.
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Creating a Person-Centered Library: Best Practices for Supporting High-Needs Patrons (Bloomsbury, 2023) provides a comprehensive overview of various services, programs, and collaborations to help libraries serve high-needs patrons as well as strategies for supporting staff working with these individuals. While public libraries are struggling to address growing numbers of high-needs patrons experiencing homelessness, food insecurity, mental health problems, substance abuse, and poverty-related needs, this book will help librarians build or contribute to library services that will best address patrons' psychosocial needs. Beth Wahler and Sarah C. Johnson, experienced in both library and social work, begin by providing an overview of patrons' psychosocial needs, structural and societal reasons for the shift in these needs, and how these changes impact libraries and library staff. Chapters focus on best practices for libraries providing person-centered services and share lessons learned, including information about special considerations for certain patron populations that might be served by individual libraries. The book concludes with information about how library organizations can support public library staff. Librarians and library students who are concerned about both patrons and library staff will find the practical advice in this book invaluable.
NBN can get 20% off Creating a Person-Centered Library by using the discount code NBN20 on the Blooomsbury.com US website.
Beth Wahler, PhD, MSW is founder and principal consultant at Beth Wahler Consulting, LLC and affiliated research faculty and previous director of the School of Social Work at the University of North Carolina- Charlotte. Dr. Wahler is a social work consultant, researcher, and experienced administrator whose primary focus is trauma-informed librarianship, library strategies for addressing patrons’ or community psychosocial needs, supporting library staff with serving high-needs patrons and reducing work-related stress/trauma, and various kinds of collaborations, services, and programs to meet patron, staff, or community needs. She has also published and presented internationally on library patron and staff needs, trauma-informed librarianship, and library/social work collaborations.
Sarah C. Johnson, MLIS, LMSW, is an Adjunct Lecturer at the School of Information Sciences at the University of Illinois at Urbana-Champaign where she teaches a graduate course on Library Social Work. As a researcher and educator, Sarah is the creator and host of the Library Social Work podcast which aims to inform the public about interdisciplinary collaborations between social service providers and public libraries.
Dr. Michael LaMagna is the Information Literacy Program & Library Services Coordinator and Professor of Library Services at Delaware County Community College.
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Asylum Ways of Seeing: Psychiatric Patients, American Thought and Culture (University of Pennsylvania Press, 2021) by Dr. Heather Murray is a cultural and intellectual history of people with mental illnesses in the twentieth-century United States. While acknowledging the fraught, and often violent, histories of American psychiatric hospitals, Heather Murray also suggests that it is in these hospitals that patients became more intense observers: they gave more conscious consideration to institutional and broader kinds of citizenship, to the nature and needs of communities versus those of individuals, to scientific modernity, and to human rights and solidarities among the suffering. All of these ideas have animated twentieth-century America, and, as Dr. Murray shows, have not just flowed into psychiatric hospitals but outward from them as well. These themes are especially clear within patients' intimate, creative, and political correspondence, writings, and drawings, as well as in hospital publications and films.
This way of thinking and imagining contrasts with more common images of the patient—as passive, resigned, and absented from the world in the cloistered setting of the hospital—that have animated psychiatry over the course of the twentieth century. Asylum Ways of Seeing traces how it is that patient resignation went from being interpreted as wisdom in the early twentieth century, to being understood as a capitulation in scientific and political sources by mid-century, to being seen as a profound violation of selfhood and individual rights by the century's end. In so doing, it makes a call to reconsider the philosophical possibilities within resignation.
This interview was conducted by Dr. Miranda Melcher whose new book focuses on post-conflict military integration, understanding treaty negotiation and implementation in civil war contexts, with qualitative analysis of the Angolan and Mozambican civil wars.
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In this episode, Dr Pierce Salguero sits down with Dr Theodora Wildcroft, a researcher, anthropologist, and long-time teacher of what she calls “post-lineage yoga.” We discuss Theo's ethnographic research on yoga in the UK, focusing on its connections with animism, paganism, and other somatic practices. We also dive into Theo’s personal approach to yoga as a liberatory practice that allows diverse bodies and minds to thrive. Along the way, we touch on disability, neuro-divergence, cultural appropriation, and the inescapable influence of colonialism for contemporary yogis.
Remember, if you want to hear from more experts on Buddhism, Asian medicine, and embodied spirituality, subscribe to Blue Beryl for monthly episodes. Please enjoy!
Resources mentioned in this episode:
Theodora Wildcroft, Post Lineage Yoga: From Guru to #MeToo (2020)
Theo Wildcroft & Harriet Mcatee, The Yoga Teacher's Survival Guide: Social Justice, Science, Politics, and Power (2024)
Barbora Sojkova & Theodora Wildcroft, Yoga Studies in 5 Minutes (2025)
Theo’s website: https://theowildcroft.com
Pierce Salguero is a transdisciplinary scholar of health humanities who is fascinated by historical and contemporary intersections between Buddhism, medicine, and crosscultural exchange. He has a Ph.D. in History of Medicine from the Johns Hopkins School of Medicine (2010), and teaches Asian history, medicine, and religion at Penn State University’s Abington College, located near Philadelphia. www.piercesalguero.com.
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Ella Houston's book Advertising Disability (Routledge, 2024) invites Cultural Disability Studies to consider how advertising, as one of the most ubiquitous forms of popular culture, shapes attitudes towards disability.
The research presented in the book provides a much-needed examination of the ways in which disability and mental health issues are depicted in different types of advertising, including charity 'sadvertisements', direct-to-consumer pharmaceutical advertisements and 'pro-diversity' brand campaigns. Textual analyses of advertisements from the eighteenth century onwards reveal how advertising reinforces barriers facing disabled people, such as stigmatising attitudes, ableist beauty 'ideals', inclusionism and the unstable crutch of charity.
As well as investigating how socio-cultural meanings associated with disability are influenced by multimodal forms of communication in advertising, insights from empirical research conducted with disabled women in the United Kingdom and the United States are provided. Moving beyond traditional textual approaches to analysing cultural representations, the book emphasises how disabled people and activists develop counternarratives informed by their personal experiences of disability, challenging ableist messages promoted by advertisements. From start to finish, activist concepts developed by the Disabled People's Movement and individuals' embodied knowledge surrounding disability, impairments and mental health issues inform critiques of advertisements.
Its critically informed approach to analysing portrayals of disability is relevant to advertisers, scholars and students in advertising studies and media studies who are interested in portraying diversity in marketing and promotional materials as well as scholars and students of disability studies and sociology more broadly.
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Emily Pacheco speaks with Professor Jemina Napier (Heriot-Watt University, Scotland) about her book, Sign Language Brokering in Deaf-Hearing Families (Palgrave Macmillan, 2021). The conversation focuses on child and sign language brokering, the innovative methodology Dr. Napier employed in her study, and the impacts of researching sign language brokering as a languaging practice.
For additional resources, show notes, and transcripts, go here.
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Fella Benabed's book Applied Global Health Humanities: Readings in the Global Anglophone Novel (de Gruyter, 2024) highlights the importance of global Anglophone literature in global health humanities, shaping perceptions of health issues in the Global South and among minorities in the Global North. Using twelve novels, it explores the historical, political, sociocultural, ethical, and environmental aspects of health by analyzing the experiences of characters who suffer from infectious diseases, mental disorders, or disabilities, and who seek holistic healing practices.
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In 1967, the US government funded the National Theatre of the Deaf, a groundbreaking rehabilitation initiative employing deaf actors. This project aligned with the postwar belief that transforming bodies, minds, aesthetics, and institutions could liberate disabled Americans from economic reliance on the state, and demonstrated the growing belief that performance could provide job opportunities for people with disabilities.
Disability Works: Performance After Rehabilitation (NYU Press, 2024) offers an original cultural history of disability and performance in modern America, exploring rehabilitation’s competing legacies. The book highlights an unexpected alliance of rehabilitation professionals, deaf teachers, policy makers, disability activists, queer artists, and religious leaders who championed performance’s rehabilitative potential. At the same time, some disabled artists imagined a different political itinerary for theatrical practice. Rather than acquiescing to the terms of productive citizenship, these artists recuperated rehabilitation as a creative resource for imagining and building a world beyond work.
Using previously unexplored archives, Disability Works portrays the history of disabled Americans’ performance labor as both a national aspiration and a national problem. The book reveals how disabled artists and activists ingeniously used rehabilitative resources to fuel their performance practices, breaking free from the grasp of rehabilitation and fostering more just institutions. From state-funded “sign-mime” to Black modern dance, community theatre to Stanislavskian actor training, speculative infrastructures to epistolary performance, Disability Works recovers an expansive repertoire of aesthetic and infrastructural investigations into the terms of how disability works in modern American culture.
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Mental health care and its radical possibilities reimagined in the context of its global development under capitalism.
The contemporary world is oversaturated with psychiatric programs, methods, and reforms promising to address any number of "crises" in mental health care. When these fail, alternatives to the alternatives simply pile up and seem to lead nowhere.
In an original and compelling account of radical experimentation in psychiatry, Warren traces a double movement in the global development of mental health services throughout the 20th century: a radical current pushing totalizing and idealistic visions of care to their practical limits and a reactionary one content with managing or eliminating chronically idle surplus populations.
Moral treatment is read in light of the utopian socialist movement; the theory of communication in the French Institutional Psychotherapy of Félix Guattari is put into conversation with the Brazilian art therapy of Nise da Silveira; the Mexican anti-psychiatry movement's reflections on violence are thought together with theories of violence developed in Argentinian psychoanalysis and Frantz Fanon's anticolonial therapeutic practice; the social form of the Italian Democratic Psychiatry and Brazilian anti-institutional movements are contrasted with the anti-psychiatry factions of the 1960s-70s North American counterculture.
Storming Bedlam: Madness, Mental Health, and Revolt (Common Notions, 2024) subverts the divisions between social and biological approaches to mental health or between psychiatry and anti-psychiatry. By exploring the history of psychiatry in the context of revolution, war, and economic development, Warren outlines a minor history of approaches to mental health care grounded in common struggles against conditions of scarcity, poverty, isolation, and exploitation.
Sasha Warren is a writer based in Minneapolis. His experiences within the psychiatric system and commitment to radical politics led him to cofound the group Hearing Voices Twin Cities, which provides an alternative social space for individuals to discuss often stigmatized extreme experiences and network with one-another. Following the George Floyd Uprising in 2020, he founded the project Of Unsound Mind to trace the histories of psychiatry, social work, and public health's connections to policing, prisons, and various disciplinary and managerial technologies.
Resources:
North American Networks of Alternatives to Psychiatry altpsy.net
Of Unsound Mind Substack
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Movements that take issue with conventional understandings of autism spectrum disorder, a developmental disability, have become increasingly visible. Drawing on more than three years of ethnographic fieldwork and interviews with participants, Dr. Catherine Tan investigates two autism-focused movements, shedding new light on how members contest expert authority. Examining their separate struggles to gain legitimacy and represent autistic people, she develops a new account of the importance of social movements as spaces for constructing knowledge that aims to challenge dominant frameworks.
Spaces on the Spectrum: How Autism Movements Resist Experts and Create Knowledge (Columbia University Press, 2024) examines the autistic rights and alternative biomedical movements, which reimagine autism in different and conflicting ways: as a difference to be accepted or as a sickness to treat. Both, however, provide a window into how ideas that conflict with dominant beliefs develop, take hold, and persist. The autistic rights movement is composed primarily of autistic adults who contend that autism is a natural human variation, not a disorder, and advocate for social and cultural inclusion and policy changes. The alternative biomedical movement, in contrast, is dominated by parents and practitioners who believe in the disproven idea that vaccines trigger autism and seek to reverse it with scientifically unsupported treatments. Both movements position themselves in opposition to researchers, professionals, and parents outside their communities. Spaces on the Spectrum offers timely insights into the roles of shared identity and communal networks in movements that question scientific and medical authority.
This interview was conducted by Dr. Miranda Melcher whose new book focuses on post-conflict military integration, understanding treaty negotiation and implementation in civil war contexts, with qualitative analysis of the Angolan and Mozambican civil wars.
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John T. Maier's The Disabled Will: A Theory of Addiction (Routledge Press, 2024) defends a comprehensive new vision of what addiction is and how people with addictions should be treated. The author argues that, in addition to physical and intellectual disabilities, there are volitional disabilities - disabilities of the will - and that addiction is best understood as a species of volitional disability. This theory serves to illuminate long-standing philosophical and psychological perplexities about addiction and addictive motivation. It articulates a normative framework within which to understand prohibition, harm reduction, and other strategies that aim to address addiction. The argument of this book is that these should ultimately be evaluated in terms of reasonable accommodations for addicted people and that the priority of addiction policy should be the provision of such accommodations. What makes this book distinctive is that it understands addiction as a fundamentally political problem, an understanding that is suggested by standard legal approaches to addiction, but which has not received a sustained defense in the previous philosophical or psychological literature. This text marks a significant advance in the theory of addiction, one which should reshape our understanding of addiction policy and its proper aims.
Jeff Adler is an ex-linguist and occasional contributor to New Books Network!
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While many live-action films portray disability as a spectacle, "crip animation" (a genre of animated films that celebrates disabled people's lived experiences) uses a variety of techniques like clay animation, puppets, pixilation, and computer-generated animation to represent the inner worlds of people with disabilities. Crip animation has the potential to challenge the ableist gaze and immerse viewers in an alternative bodily experience.
In Animated Film and Disability: Cripping Spectatorship (Indiana University Press, 2023), Dr. Slava Greenberg analyses over 30 animated works about disabilities, including Rocks in My Pockets, An Eyeful of Sound, and A Shift in Perception. He considers the ableism of live-action cinematography, the involvement of filmmakers with disabilities in the production process, and the evocation of the spectators' senses of sight and hearing, consequently subverting traditional spectatorship and listenership hierarchies. In addition, Dr. Greenberg explores physical and sensory accessibility in theatres and suggests new ways to accommodate cinematic screenings.
Offering an introduction to disability studies and crip theory for film, media, and animation scholars, Animated Film and Disability demonstrates that crip animation has the power to breach the spectator's comfort, evoking awareness of their own bodies and, in certain cases, their social privileges.
This interview was conducted by Dr. Miranda Melcher whose new book focuses on post-conflict military integration, understanding treaty negotiation and implementation in civil war contexts, with qualitative analysis of the Angolan and Mozambican civil wars.
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If you’ve ever worked with dementia patients before, you know how unique and bizarre the experience can be, and how little the stereotypes actually hold up to the experience. Even knowing about the diagnosis often does little to help us in caring for people, and many caregivers find themselves getting sucked into behavioral loops of their own. This is because your brain is not wired to deal with the altered form of reality that dementia patients inhabit. Evolution has not equipped us to deal with these dynamics.
Unpacking all this is our guest today, Dasha Kiper in her book Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain (Random House, 2023). Having both worked with dementia patients and run support groups for caregivers, she’s seen patterns play out over countless situations, and has mapped the cognitive landscape of people working to take care of those afflicted with the disease. In a series of engaging and provocative essays, she’s able to elucidate our limitations, the various neurological traps we are often tempted to fall into, hopefully offering caregivers some clarity on themselves and just how far from reality this work often takes them.
Dasha Kiper is the consulting clinical director of support groups at an Alzheimer’s organization, and holds an MA in clinical psychology from Columbia University.
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Season Two erupts in our ears with a film-noir soundscape—an eerie voice utters strange and disjointed phrases and echoing footsteps lead to sirens and gunshots. What on Earth are we listening to? We unravel the mystery with NYU media professor Mara Mills who studies the historical relationship between disability and media technologies.
In Episode 8, “Test Subjects,” we examine the strange and obscure history of sound’s use as a psychological diagnostic tool. In the late 20th century, while many disabilities were eliminated through medical interventions, a host of new disabilities were invented, especially within the realm of psychology. Mills’s historical work in the audio archives of American Foundation for the Blind reveals how auditory projective testing was used to diagnose blind people with additional psychological disabilities. As we listen to these strange archival sounds, we learn how culture and technology shape the history of human ability and disability.
Read Mara Mill’s article on auditory projective tests, “Evocative Object: Auditory Inkblot” and visit NYU’s Center for Disability Studies, which she co-directs with Faye Ginsburg. Thanks to archivist Helen Selsdon and the American Foundation for the Blind for the use of the auditory projective tests.
This episode’s theme music is by Mack Hagood with additional music by Graeme Gibson, Blue Dot Sessions, Claude Debussy, and Duke Ellington. The show was edited by Craig Eley and Mack Hagood.
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Emily Pacheco speaks with writer and researcher Jessica Kirkness about her memoir, The House with All the Lights on: Three Generations, One Roof, a Language of Light (Allen & Unwin, 2023). Jessica has published in Meanjin and The Conversation, as well as other outlets. Her PhD focused on the ‘hearing line’: the invisible boundary between Deaf and hearing cultures. She is also a teacher of nonfiction writing at Macquarie University in Sydney, Australia.
The House With All The Lights On explores linguistic and cultural dynamics within Deaf-hearing families. Jessica shares her experience having Deaf grandparents and navigating the cultural borderline between Deaf and hearing cultures. It is a wonderful memoir about family, the complexities of identity, and linguistic diversity.
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In Disability Worlds (Duke UP, 2024), Faye Ginsburg and Rayna Rapp chronicle and theorize two decades of immersion in New York City’s wide-ranging disability worlds as parents, activists, anthropologists, and disability studies scholars. They situate their disabled children’s lives among the experiences of advocates, families, experts, activists, and artists in larger struggles for recognition and rights. Disability consciousness, they show, emerges in everyday politics, practices, and frictions. Chapters consider dilemmas of genetic testing and neuroscientific research, reimagining kinship and community, the challenges of “special education,” and the perils of transitioning from high school. They also highlight the vitality of neurodiversity activism, disability arts, politics, and public culture.
Disability Worlds reflects the authors’ anthropological commitments to recognizing the significance of this fundamental form of human difference. Ginsburg and Rapp’s conversations with diverse New Yorkers reveal the bureaucratic constraints and paradoxes established in response to the disability rights movement, as well as the remarkable creativity of disabled people and their allies who are opening pathways into both disability justice and disability futures.
A transcript of this discussion is available here.
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