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Medicine Stories: Essays for Radicals
by Aurora Levins MoralesIn this revised and expanded edition of Medicine Stories, Aurora Levins Morales weaves together insights and lessons learned over a lifetime of activism to offer a new theory of social justice. Calling for a politics of integrity that recognizes the complicated wholeness of individual and collective lives, Levins Morales delves among the interwoven roots of multiple oppressions, exposing connections, crafting strategies, and uncovering the wellsprings of resilience and joy. Throughout these twenty-eight essays—twenty-one of which are new or extensively revised—she exposes the structures and mechanisms that silence voices and divide movements. The result is a medicine bag full of techniques and perspectives to build a universal solidarity that is flexible, nuanced, and strong enough to fundamentally shift our world toward justice. Intimately personal and globally relevant, Medicine Stories brings clarity and hope to tangled, emotionally charged social issues in beautiful and accessible language.
Hush: Media and Sonic Self-Control (Sign, Storage, Transmission)
by Mack HagoodFor almost sixty years, media technologies have promised users the ability to create sonic safe spaces for themselves—from bedside white noise machines to Beats by Dre's “Hear What You Want” ad campaign, in which Colin Kaepernick's headphones protect him from taunting crowds. In Hush, Mack Hagood draws evidence from noise-canceling headphones, tinnitus maskers, LPs that play ocean sounds, nature-sound mobile apps, and in-ear smart technologies to argue the true purpose of media is not information transmission, but rather the control of how we engage our environment. These devices, which Hagood calls orphic media, give users the freedom to remain unaffected in the changeable and distracting spaces of contemporary capitalism and reveal how racial, gendered, ableist, and class ideologies shape our desire to block unwanted sounds. In a noisy world of haters, trolls, and information overload, guarded listening can be a necessity for self-care, but Hagood argues our efforts to shield ourselves can also decrease our tolerance for sonic and social difference. Challenging our self-defeating attempts to be free of one another, he rethinks media theory, sound studies, and the very definition of media.
Black Madness: : Mad Blackness
by Therí Alyce PickensIn Black Madness :: Mad Blackness Therí Alyce Pickens rethinks the relationship between Blackness and disability, unsettling the common theorization that they are mutually constitutive. Pickens shows how Black speculative and science fiction authors such as Octavia Butler, Nalo Hopkinson, and Tananarive Due craft new worlds that reimagine the intersection of Blackness and madness. These creative writer-theorists formulate new parameters for thinking through Blackness and madness. Pickens considers Butler's Fledgling as an archive of Black madness that demonstrates how race and ability shape subjectivity while constructing the building blocks for antiracist and anti-ableist futures. She examines how Hopkinson's Midnight Robber theorizes mad Blackness and how Due's African Immortals series contests dominant definitions of the human. The theorizations of race and disability that emerge from these works, Pickens demonstrates, challenge the paradigms of subjectivity that white supremacy and ableism enforce, thereby pointing to the potential for new forms of radical politics.
For a Pragmatics of the Useless (Thought in the Act)
by Erin ManningWhat has a use in the future, unforeseeably, is radically useless now. What has an effect now is not necessarily useful if it falls through the gaps. In For a Pragmatics of the Useless Erin Manning examines what falls outside the purview of already-known functions and established standards of value, not for want of potential but for carrying an excess of it. The figures are various: the infrathin, the artful, proprioceptive tactility, neurodiversity, black life. It is around the latter two that a central refrain echoes: "All black life is neurodiverse life." This is not an equation, but an "approximation of proximity." Manning shows how neurotypicality and whiteness combine to form a normative baseline for existence. Blackness and neurodiversity "schizz" around the baseline, uselessly, pragmatically, figuring a more-than of life living. Manning, in dialogue with Félix Guattari and drawing on the black radical tradition's accounts of black life and the aesthetics of black sociality, proposes a "schizoanalysis" of the more-than, charting a panoply of techniques for other ways of living and learning.
Diminished Faculties: A Political Phenomenology of Impairment
by Jonathan SterneIn Diminished Faculties Jonathan Sterne offers a sweeping cultural study and theorization of impairment. Drawing on his personal history with thyroid cancer and a paralyzed vocal cord, Sterne undertakes a political phenomenology of impairment in which experience is understood from the standpoint of a subject that is not fully able to account for itself. He conceives of impairment as a fundamental dimension of human experience, examining it as both political and physical. While some impairments are enshrined as normal in international standards, others are treated as causes or effects of illness or disability. Alongside his fractured account of experience, Sterne provides a tour of alternative vocal technologies and practices; a study of “normal” hearing loss as a cultural practice rather than a medical problem; and an intertwined history and phenomenology of fatigue that follows the concept as it careens from people to materials science to industrial management to spoons. Sterne demonstrates how impairment is a problem, opportunity, and occasion for approaching larger questions about disability, subjectivity, power, technology, and experience in new ways. Diminished Faculties ends with a practical user’s guide to impairment theory.
Work Requirements: Race, Disability, and the Print Culture of Social Welfare
by Todd CarmodyThroughout the history of the United States, work-based social welfare practices have served to affirm the moral value of work. In the late nineteenth century this representational project came to be mediated by the printed word with the emergence of industrial print technologies, the expansion of literacy, and the rise of professionalization. In Work Requirements Todd Carmody asks how work, even the most debasing or unproductive labor, came to be seen as inherently meaningful during this era. He explores how the print culture of social welfare—produced by public administrators, by economic planners, by social scientists, and in literature and the arts—tasked people on the social and economic margins, specifically racial minorities, incarcerated people, and people with disabilities, with shoring up the fundamental dignity of work as such. He also outlines how disability itself became a tool of social discipline, defined by bureaucratized institutions as the inability to work. By interrogating the representational effort necessary to make work seem inherently meaningful, Carmody ultimately reveals a forgotten history of competing efforts to think social belonging beyond or even without work.
The Terrible We: Thinking with Trans Maladjustment (ASTERISK)
by Cameron Awkward-RichIn The Terrible We Cameron Awkward-Rich thinks with the bad feelings and mad habits of thought that persist in both transphobic discourse and trans cultural production. Observing that trans studies was founded on a split from and disavowal of madness, illness, and disability, Awkward-Rich argues for and models a trans criticism that works against this disavowal. By tracing the coproduction of the categories of disabled and transgender in the United States at the turn of the twentieth century and analyzing transmasculine literature and theory by Eli Clare, Elliott DeLine, Dylan Scholinski, and others, Awkward-Rich suggests that thinking with maladjustment might provide new perspectives on the impasses arising from the conflicted relationships among trans, feminist, and queer. In so doing, he demonstrates that rather than only impeding or confining trans life, thought, and creativity, forms of maladjustment have also been and will continue to be central to their development.Duke University Press Scholars of Color First Book Award recipient
Activist Affordances: How Disabled People Improvise More Habitable Worlds
by Arseli DokumaciFor people who are living with disability, including various forms of chronic diseases and chronic pain, daily tasks like lifting a glass of water or taking off clothes can be difficult if not impossible. In Activist Affordances, Arseli Dokumacı draws on ethnographic work with differently disabled people whose ingenuity, labor, and artfulness allow them to achieve these seemingly simple tasks. Dokumacı shows how they use improvisation to imagine and bring into being more habitable worlds through the smallest of actions and the most fleeting of movements---what she calls “activist affordances.” Even as an environment shrinks to a set of constraints rather than opportunities, the improvisatory space of performance opens up to allow disabled people to imagine that same environment otherwise. Dokumacı shows how disabled people’s activist affordances present the potential for a more liveable and accessible world for all of us.
Crip Colony: Mestizaje, US Imperialism, and the Queer Politics of Disability in the Philippines
by Sony Coráñez BoltonIn Crip Colony, 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.
Intoxicated: Race, Disability, and Chemical Intimacy across Empire (ANIMA: Critical Race Studies Otherwise)
by Mel Y. ChenIn Intoxicated Mel Y. Chen explores the ongoing imperial relationship between race, sexuality, and disability. They focus on nineteenth-century biopolitical archives in England and Australia to show how mutual entanglements of race and disability take form through toxicity. Examining English scientist John Langdon Down’s characterization of white intellectual disability as Asian interiority and Queensland’s racialization and targeting of Aboriginal peoples through its ostensible concern with black opium, Chen explores how the colonial administration of race and disability gives rise to “intoxicated” subjects often shadowed by slowness. Chen charts the ongoing reverberations of these chemical entanglements in art and contemporary moments of political and economic conflict or agitation. Although intoxicated subjects may be affected by ongoing pollution or discredited as agents of failure, Chen affirmatively identifies queer/crip forms of unlearning and worldmaking under imperialism. Exemplifying an undisciplined thinking that resists linear or accretive methods of inquiry, Chen unsettles conventional understandings of slowness and agitation, intellectual method, and the toxic ordinary.
dear elia: Letters from the Asian American Abyss
by Mimi KhúcIn dear elia Mimi Khúc revolutionizes how we understand mental health. Khúc traces the contemporary Asian American mental health crisis from the university into the maw of the COVID-19 pandemic, reenvisioning mental health through a pedagogy of unwellness—the recognition that we are all differentially unwell. In an intimate series of letters, she bears witness to Asian American unwellness up close and invites readers to recognize in it the shapes and sources of their own unwellness. Khúc draws linkages between student experience, the Asian immigrant family, the adjunctification of the university, and teaching methods pre- and post-COVID-19 to illuminate hidden roots of our collective unwellness: shared investments in compulsory wellness and meritocracy. She reveals the university as a central node and engine of unwellness and argues that we can no longer do Asian American studies without Asian American mental health—and vice versa. Interspersed throughout the book are reflective activities, including original tarot cards, that enact the very pedagogy Khúc advances, offering readers alternative ways of being that divest from structures of unwellness and open new possibilities for collective care.
Black Disability Politics
by Sami SchalkIn Black Disability Politics Sami Schalk explores how issues of disability have been and continue to be central to Black activism from the 1970s to the present. Schalk shows how Black people have long engaged with disability as a political issue deeply tied to race and racism. She points out that this work has not been recognized as part of the legacy of disability justice and liberation because Black disability politics differ in language and approach from the mainstream white-dominant disability rights movement. Drawing on the archives of the Black Panther Party and the National Black Women’s Health Project alongside interviews with contemporary Black disabled cultural workers, Schalk identifies common qualities of Black disability politics, including the need to ground public health initiatives in the experience and expertise of marginalized disabled people so that they can work in antiracist, feminist, and anti-ableist ways. Prioritizing an understanding of disability within the context of white supremacy, Schalk demonstrates that the work of Black disability politics not only exists but is essential to the future of Black liberation movements.
Crip Times: Disability, Globalization, and Resistance (Crip #1)
by Robert McRuerContends that disability is a central but misunderstood element of global austerity politics. Broadly attentive to the political and economic shifts of the last several decades, Robert McRuer asks how disability activists, artists and social movements generate change and resist the dominant forms of globalization in an age of austerity, or “crip times.” Throughout Crip Times, McRuer considers how transnational queer disability theory and culture—activism, blogs, art, photography, literature, and performance—provide important and generative sites for both contesting austerity politics and imagining alternatives. The book engages various cultural flashpoints, including the spectacle surrounding the London 2012 Olympic and Paralympic Games; the murder trial of South African Paralympian Oscar Pistorius; the photography of Brazilian artist Livia Radwanski which documents the gentrification of Colonia Roma in Mexico City; the defiance of Chilean students demanding a free and accessible education for all; the sculpture and performance of UK artist Liz Crow; and the problematic rhetoric of “aspiration” dependent upon both able-bodied and disabled figurations that emerged in Thatcher’s England. Crip Times asserts that disabled people themselves are demanding that disability be central to our understanding of political economy and uneven development and suggests that, in some locations, their demand for disability justice is starting to register. Ultimately, McRuer argues that a politics of austerity will always generate the compulsion to fortify borders and to separate a narrowly defined “us” in need of protection from “them.”
Social Security Disability Law and the American Labor Market
by Jon C. DubinHow social security disability law is out of touch with the contemporary American labor market Passing down nearly a million decisions each year, more judges handle disability cases for the Social Security Administration than federal civil and criminal cases combined. In Social Security Disability Law and the American Labor Market, Jon C. Dubin challenges the contemporary policies for determining disability benefits and work assessment. He posits the fundamental questions: where are the jobs for persons with significant medical and vocational challenges? And how does the administration misfire in its standards and processes for answering that question? Deploying his profound understanding of the Social Security Administration and Disability law and policy, he demystifies the system, showing us its complex inner mechanisms and flaws, its history and evolution, and how changes in the labor market have rendered some agency processes obsolete. Dubin lays out how those who advocate eviscerating program coverage and needed life support benefits in the guise of modernizing these procedures would reduce the capacity for the Social Security Administration to function properly and serve its intended beneficiaries, and argues that the disability system should instead be “mended, not ended.”Dubin argues that while it may seem counterintuitive, the transformation from an industrial economy to a twenty-first-century service economy in the information age, with increased automation, and resulting diminished demand for arduous physical labor, has not meaningfully reduced the relevance of, or need for, the disability benefits programs. Indeed, they have created new and different obstacles to work adjustments based on the need for other skills and capacities in the new economy—especially for the significant portion of persons with cognitive, psychiatric, neuro-psychological, or other mental impairments. Therefore, while the disability program is in dire need of empirically supported updating and measures to remedy identified deficiencies, obsolescence, inconsistencies in application, and racial, economic and other inequities, the program’s framework is sufficiently broad and enduring to remain relevant and faithful to the Act’s congressional beneficent purposes and aspirations.
Signs of Disability (Crip #4)
by Stephanie L. KerschbaumHow can we learn to notice the signs of disability?We see indications of disability everywhere: yellow diamond-shaped “deaf person in area” road signs, the telltale shapes of hearing aids, or white-tipped canes sweeping across footpaths. But even though the signs are ubiquitous, Stephanie L. Kerschbaum argues that disability may still not be perceived due to a process she terms “dis-attention.”To tell better stories of disability, this multidisciplinary work turns to rhetoric, communications, sociology, and phenomenology to understand the processes by which the material world becomes sensory input that then passes through perceptual apparatuses to materialize phenomena—including disability. By adding perception to the understanding of disability’s materialization, Kerschbaum significantly expands our understanding of disability, accounting for its fluctuations and transformations in the semiotics of everyday life.Drawing on a set of thirty-three research interviews focused on disabled faculty members’ experiences with disability disclosure, as well as written narratives by disabled people, this book argues for the materiality of narrative, suggesting narratives as a means by which people enact boundaries around phenomena and determine their properties. Signs of Disability offers strategies and practices for challenging problematic and pervasive forms of “dis-attention” and proposes a new theoretical model for understanding disability in social, rhetorical, and material settings.
In Case of Emergency: How Technologies Mediate Crisis and Normalize Inequality
by Elizabeth EllcessorA much-needed look at the growth of emergency media and its impact on our livesIn an emergency, we often look to media: to contact authorities, to get help, to monitor evolving situations, or to reach out to our loved ones. Sometimes we aren’t even aware of an emergency until we are notified by one of the countless alerts, alarms, notifications, sirens, text messages, or phone calls that permeate everyday life. Yet most people have only a partial understanding of how such systems make sense of and act upon an “emergency.” In Case of Emergency argues that emergency media are profoundly cultural artifacts that shape the very definition of “emergency” as an opposite of “normal.” Looking broadly across a range of contemporary emergency-related devices, practices, and services, Elizabeth Ellcessor illuminates the cultural and political underpinnings and socially differential effects of emergency media. By interweaving in-depth interviews with emergency-operation and app-development experts, archival materials, and discursive and technological readings of hardware and infrastructures, Ellcessor demonstrates that emergency media are powerful components of American life that are rarely, if ever, neutral. The normalization of ideologies produced and reinforced by emergency media result in unequal access to emergency services and discriminatory assumptions about who or what is a threat and who deserves care and protection. As emergency media undergo massive growth and transformation in response to digitization and attendant entrepreneurial cultures, Ellcessor asks where access, equity, and accountability fit in all of this. The first book to develop a typology of emergency media, In Case of Emergency opens a much-needed conversation around the larger cultural meanings of “emergency,” and what an ethical and care-based approach to emergency could entail.
Distressing Language: Disability and the Poetics of Error (Crip)
by Michael DavidsonThe role of disability and deafness in artDistressing Language is full of mistakes—errors of hearing, speaking, writing, and understanding. Michael Davidson engages the role of disability and deafness in contemporary aesthetics, exploring how physical and intellectual differences challenge our understanding of art and poetry. Where hearing and speaking are considered normative conditions of the human, what happens when words are misheard and misspoken? How have writers and artists, both disabled and non-disabled, used error as generative elements in contesting the presumed value of “sounding good”? Distressing Language grows out of the author’s experience of hearing loss in which misunderstandings have become a daily occurrence. Davidson maintains that verbal confusions are less an aberration in understanding than a component of new knowledge.Davidson discusses a range of sites, from captioning errors and Bad Lip Reads on YouTube, to the deaf artist Christine Sun Kim’s audiovisual installations, and a poetic reinterpretation of the Biblical Shibboleth responding to the atrocities of the Holocaust. Deafness becomes a guide in each chapter of Distressing Language, giving us a closer look at a range of artistic mediums and how artists are working with the axiom of “error” to produce novel subjecthoods and possibilities.
Falling, Floating, Flickering: Disability and Differential Movement in African Diasporic Performance (Crip #7)
by Hershini Bhana YoungInsists on the importance of embodiment and movement to the creation of Black socialityLinking African diasporic performance, disability studies, and movement studies, Falling, Floating, Flickering approaches disability transnationally by centering Black, African, and diasporic experiences. By eschewing capital’s weighted calculus of which bodies hold value, this book centers alternate morphologies and movement practices that have previously been dismissed as abnormal or unrecognizable. To move beyond binaries of ability, Hershini Bhana Young traverses multiple geohistories and cultural forms stretching from the United States and the Mediterranean to Sierra Leone, Nigeria, and South Africa, as well as independent and experimental film, novels, sculptures, images, dance, performances, and anecdotes. In doing so, she argues for the importance of differential embodiment and movement to the creation and survival of Black sociality, and refutes stereotypic notions of Africa as less progressive than the West in recognizing the rights of disabled people. Ultimately, this book foregrounds the engagement of diasporic Africans, who are still reeling from the violence of colonialism, slavery, poverty, and war, as they gesture toward a liberatory Black sociality by falling, floating, and flickering.
Crip Authorship: Disability as Method
by Mara Mills and Rebecca SanchezAn expansive volume presenting crip approaches to writing, research, and publishingCrip Authorship: Disability as Method is an expansive volume presenting the multidisciplinary methods brought into being by disability studies and activism. Mara Mills and Rebecca Sanchez have convened leading scholars, artists, and activists to explore the ways disability shapes authorship, transforming cultural production, aesthetics, and media.Starting from the premise that disability is plural and authorship spans composition, affect, and publishing, this collection of thirty-five compact essays asks how knowledge about disability is produced and shared in disability studies. Disability alters, generates, and dismantles method. Crip authorship takes place within and beyond the commodity version of authorship, in books, on social media, and in creative works that will never be published. The chapters draw on the expertise of international researchers and activists in the humanities, social sciences, education, arts, and design. Across five sections—Writing, Research, Genre/Form, Publishing, Media—contributors consider disability as method for creative work: practices of writing and other forms of composition; research methods and collaboration; crip aesthetics; media formats and hacks; and the capital, access, legal standing, and care networks required to publish. Designed to be accessible and engaging for students, Crip Authorship also provides theoretically sophisticated arguments in a condensed form that will make the text a key resource for disability studies scholars. Essays include Mel Y Chen on the temporality of writing with chronic illness; Remi Yergeau on perseveration; La Marr Jurelle Bruce on mad Black writing; Alison Kafer on the reliance of the manifesto genre on disability; Jaipreet Virdi on public scholarship for disability justice; Ellen Samuels on the importance of disability and illness to autotheory; Xuan Thuy Nguyen on decolonial research methods for disability studies; Emily Lim Rogers on virtual ethnography; Cameron Awkward-Rich on depression and trans reading methods; Robert McRuer on crip theory in translation; Kelsie Acton on plain language writing; and Georgina Kleege on description as an access and aesthetic technique.
Bending Over Backwards: Essays on Disability and the Body (Cultural Front #6)
by Lennard J. DavisWith the advent of the human genome, cloning, stem-cell research and many other developments in the way we think of the body, disability studies provides an entirely new way of thinking about the body in its relation to politics, the environment, the legal system, and global economies. Bending Over Backwards reexamines issues concerning the relationship between disability and normality in the light of postmodern theory and political activism. Davis takes up homosexuality, the Americans with Disabilities Act, the legal system, the history of science and medicine, eugenics, and genetics. Throughout, he maintains that disability is the prime category of postmodernity because it redefines the body in relation to concepts of normalcy, which underlie the very foundations of democracy and humanistic ideas about the body. Bending Over Backwards argues that disability can become the new prism through which postmodernity examines and defines itself, supplanting the categories of race, class, gender, and sexual orientation.
Disabilities of the Color Line: Redressing Antiblackness from Slavery to the Present (Crip #5)
by Dennis TylerReveals how disability and disablement have shaped Black social life in AmericaThrough both law and custom, the color line has cast Black people as innately disabled and thus unfit for freedom, incapable of self-governance, and contagious within the national body politic. Disabilities of the Color Line maintains that the Black literary tradition historically has inverted this casting by exposing the disablement of racism without disclaiming disability.In place of a triumphalist narrative of overcoming where both disability and disablement alike are shunned, Dennis Tyler argues that Black authors and activists have consistently avowed what he calls the disabilities of the color line: the historical and ongoing anti-Black systems of division that maim, immobilize, and stigmatize Black people. In doing so, Tyler reveals how Black writers and activists such as David Walker, Henry Box Brown, William and Ellen Craft, Charles Chesnutt, James Weldon Johnson, and Mamie Till-Mobley have engaged in a politics and aesthetics of redress: modes of resistance that, in the pursuit of racial and disability justice, acknowledged the disabling violence perpetrated by anti-Black regimes in order to conceive or engender dynamic new worlds that account for people of all abilities. While some writers have affirmed disability to capture how their bodies, minds, and health have been made vulnerable to harm and impairment by the state and its citizens, others’ assertion of disability symbolizes a sense of community as well as a willingness to imagine and create a world distinct from the dominant social order.
Keywords for Disability Studies (Keywords #7)
by Rachel Adams David Serlin Benjamin ReissKeywords for Disability Studies aims to broaden and define the conceptual framework of disability studies for readers and practitioners in the field and beyond. The volume engages some of the most pressing debates of our time, such as prenatal testing, euthanasia, accessibility in public transportation and the workplace, post-traumatic stress, and questions about the beginning and end of life. Each of the 60 essays in Keywords for Disability Studies focuses on a distinct critical concept, including "ethics," "medicalization," "performance," "reproduction," "identity," and "stigma," among others. Although the essays recognize that "disability" is often used as an umbrella term, the contributors to the volume avoid treating individual disabilities as keywords, and instead interrogate concepts that encompass different components of the social and bodily experience of disability. The essays approach disability as an embodied condition, a mutable historical phenomenon, and a social, political, and cultural identity. An invaluable resource for students and scholars alike, Keywords for Disability Studies brings the debates that have often remained internal to disability studies into a wider field of critical discourse, providing opportunities for fresh theoretical considerations of the field's core presuppositions through a variety of disciplinary perspectives. Visit keywords.nyupress.org for online essays, teaching resources, and more.
Living on the Spectrum: Autism and Youth in Community (Anthropologies of American Medicine: Culture, Power, and Practice #8)
by Elizabeth FeinHow youth on the autism spectrum negotiate the contested meanings of neurodiversityAutism is a deeply contested condition. To some, it is a devastating invader, harming children and isolating them. To others, it is an asset and a distinctive aspect of an individual’s identity. How do young people on the spectrum make sense of this conflict, in the context of their own developing identity? While most of the research on Asperger’s and related autism conditions has been conducted with individuals or in settings in which people on the spectrum are in the minority, this book draws on two years of ethnographic work in communities that bring people with Asperger’s and related conditions together. It can thus begin to explore a form of autistic culture, through attending to how those on the spectrum make sense of their conditions through shared social practices.Elizabeth Fein brings her many years of experience in both clinical psychology and psychological anthropology to analyze the connection between neuropsychological difference and culture. She argues that current medical models, which espouse a limited definition, are ill equipped to deal with the challenges of discussing autism-related conditions. Consequently, youths on the autism spectrum reach beyond medicine for their stories of difference and disorder, drawing instead on shared mythologies from popular culture and speculative fiction to conceptualize their experience of changing personhood. In moving and persuasive prose, Living on the Spectrum illustrates that young people use these stories to pioneer more inclusive understandings of what makes us who we are.
Unexpected: Parenting, Prenatal Testing, and Down Syndrome
by Alison PiepmeierWhat prenatal tests and down syndrome reveal about our reproductive choicesWhen Alison Piepmeier—scholar of feminism and disability studies, and mother of Maybelle, an eight-year-old girl with Down syndrome—died of cancer in August 2016, she left behind an important unfinished manuscript about motherhood, prenatal testing, and disability. In Unexpected, George Estreich and Rachel Adams pick up where she left off, honoring the important research of their friend and colleague, as well as adding new perspectives to her work.Based on interviews with parents of children with Down syndrome, as well as women who terminated their pregnancies because their fetus was identified as having the condition, Unexpected paints an intimate, nuanced picture of reproductive choice in today’s world. Piepmeier takes us inside her own daughter’s life, showing how Down syndrome is misunderstood, stigmatized, and condemned, particularly in the context of prenatal testing.At a time when medical technology is rapidly advancing, Unexpected provides a much-needed perspective on our complex, and frequently troubling, understanding of Down syndrome.
Disability Media Studies
by Elizabeth Ellcessor and Bill KirkpatrickIntroduces key ideas and offers a sense of the new frontiers and questions in the emerging field of disability media studies Disability Media Studies articulates the formation of a new field of study, based in the rich traditions of media, cultural, and disability studies. Necessarily interdisciplinary and diverse, this collection weaves together work from scholars from a variety of disciplinary homes, into a broader conversation about exploring media artifacts in relation to disability. The book provides a comprehensive overview for anyone interested in the study of disability and media today. Case studies include familiar contemporary examples—such as Iron Man 3, Lady Gaga, and Oscar Pistorius—as well as historical media, independent disability media, reality television, and media technologies. The contributors consider disability representation, the role of media in forming cultural assumptions about ability, the construction of disability via media technologies, and how disabled audiences respond to particular media artifacts. The volume concludes with afterwords from two different perspectives on the field—one by disability scholar Rachel Adams, the other by media scholars Mara Mills and Jonathan Sterne—that reflect upon the collection, the ongoing conversations, and the future of disability media studies. Disability Media Studies is a crucial text for those interested in this flourishing field, and will pave the way for a greater understanding of disability media studies and its critical concepts and conversations.