Academic Ableism brings together disability studies and institutional critique to recognize the ways that disability is composed in and by higher education, and rewrites the spaces, times, and economies of disability in higher education to place disability front and center. For too long, argues Jay Timothy Dolmage, disability has been constructed as the antithesis of higher education, often positioned as a distraction, a drain, a problem to be solved. The ethic of higher education encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at intellectual, mental, or physical weakness, even as we gesture toward the value of diversity and innovation. Examining everything from campus accommodation processes, to architecture, to popular films about college life, Dolmage argues that disability is central to higher education, and that building more inclusive schools allows better education for all.
Accessible Citizenships examines Chicana/o cultural representations that conceptualize political community through images of disability. Working against the assumption that disability is a metaphor for social decay or political crisis, Julie Avril Minich analyzes literature, film, and visual art post-1980 in which representations of non-normative bodies work to expand our understanding of what it means to belong to a political community.
Minich shows how queer writers like Arturo Islas and Cherríe Moraga have reconceptualized Chicano nationalism through disability images. She further addresses how the U.S.-Mexico border and disabled bodies restrict freedom and movement. Finally, she confronts the changing role of the nation-state in the face of neoliberalism as depicted in novels by Ana Castillo and Cecile Pineda.
Accessible Citizenships illustrates how these works gesture towards less exclusionary forms of citizenship and nationalism. Minich boldly argues that the corporeal images used to depict national belonging have important consequences for how the rights and benefits of citizenship are understood and distributed.
Parents of children with disabilities often situate their activism as a means of improving the world for their child. However, some disabled activists perceive parental activism as working against the independence and dignity of people with disabilities. This thorny relationship is at the heart of the groundbreaking Allies and Obstacles.
The authors chronicle parents’ path-breaking advocacy in arenas such as the right to education and to liberty via deinstitutionalization as well as how they engaged in legal and political advocacy. Allies and Obstacles provides a macro analysis of parent activism using a social movement perspective to reveal and analyze the complex—and often tense—relationship of parents to disability rights organizations and activism.
The authors look at organizational and individual narratives using four case studies that focus on intellectual disability, psychiatric diagnoses, autism, and a broad range of physical disabilities including cerebral palsy and muscular dystrophy. These cases explore the specific ways in which activism developed among parents and people with disabilities, as well as the points of alliance and the key points of contestation. Ultimately, Allies and Obstacles develops new insights into disability activism, policy, and the family.
What is the direct impact that disability studies has on the lives of disabled people today? The editors and contributors to this essential anthology, Barriers and Belonging, provide thirty-seven personal narratives thatexplore what it means to be disabled and why the field of disability studies matters.
The editors frame the volume by introducing foundational themes of disability studies. They provide a context of how institutions—including the family, schools, government, and disability peer organizations—shape and transform ideas about disability. They explore how disability informs personal identity, interpersonal and community relationships, and political commitments. In addition, there are heartfelt reflections on living with mobility disabilities, blindness, deafness, pain, autism, psychological disabilities, and other issues. Other essays articulate activist and pride orientations toward disability, demonstrating the importance of reframing traditional narratives of sorrow and medicalization.
The critical, self-reflective essays in Barriers and Belonging provide unique insights into the range and complexity of disability experience.
In the neoliberal era, when human worth is measured by its relative utility within global consumer culture, selected disabled people have been able to gain entrance into late capitalist culture. The Biopolitics of Disability terms this phenomenon “ablenationalism” and asserts that “inclusion” becomes meaningful only if disability is recognized as providing modes of living that are alternatives to governing norms of productivity and independence. Thus, the book pushes beyond questions of impairment to explore how disability subjectivities create new forms of embodied knowledge and collective consciousness. The focus is on the emergence of new crip/queer subjectivities at work in disability arts, disability studies pedagogy, independent and mainstream disability cinema (e.g., Midnight Cowboy), internet-based medical user groups, anti-normative novels of embodiment (e.g., Richard Powers’s The Echo-Maker) and, finally, the labor of living in “non-productive” bodies within late capitalism.
Disability Studies diverge from the medical model of disability (which argues that disabled subjects can and should be “fixed”) to view disability as socially constructed, much in the same way other identities are. The work of reading black and disabled bodies is not only recovery work, but work that requires a willingness to deconstruct the systems that would keep those bodies in separate spheres. This pivotal volume uncovers the misrepresentations of black disabled bodies and demonstrates how those bodies transform systems and culture. Drawing on key themes in Disability Studies and African American Studies, these collected essays complement one another in interesting and dynamic ways, to forge connections across genres and chronotopes, an invitation to keep blackness and disability in conversation. With an analysis of disability as a result of war, studies of cognitive impairment and slavery in fiction, representations of slavery and violence in photography, deconstructions of illness (cancer and AIDS) narratives, comparative analyses of black and Latina/o and black and African subjects, analysis of treatments of disability in hip-hop, and commentary on disability, blackness, and war, this volume shows that the historical lines of demarcation in this field are permeable and should be challenged.
"A testament to the synergy of two evolving fields. From the study of staged performances to examinations of the performing body in everyday life, this book demonstrates the enormous profitability of moving beyond disability as metaphor. . . . It's a lesson that many of our cultural institutions desperately need to learn."
-Martin F. Norden, University of Massachusetts-Amherst
This groundbreaking collection imagines disabled bodies as "bodies in commotion"-bodies that dance across artistic and discursive boundaries, challenging our understanding of both disability and performance. In the book's essays, leading critics and artists explore topics that range from theater and dance to multi-media performance art, agit-prop, American Sign Language theater, and wheelchair sports. Bodies in Commotion is the first collection to consider the mutually interpretive qualities of these two emerging fields, producing a dynamic new resource for artists, activists, and scholars.
For years the subject of human disability has engaged those in the biological, social and cognitive sciences, while at the same time, it has been curiously neglected within the humanities. The Body and Physical Difference seeks to introduce the field of disability studies into the humanities by exploring the fantasies and fictions that have crystallized around conceptions of physical and cognitive difference. Based on the premise that the significance of disabilities in culture and the arts has been culturally vexed as well as historically erased, the collection probes our society's pathological investment in human variability and "aberrancy." The contributors demonstrate how definitions of disability underpin fundamental concepts such as normalcy, health, bodily integrity, individuality, citizenship, and morality--all terms that define the very essence of what it means to be human.
The book provides a provocative range of topics and perspectives: the absence of physical "otherness" in Ancient Greece, the depiction of the female invalid in Victorian literature, the production of tragic innocence in British and American telethons, the reconstruction of Civil War amputees, and disability as the aesthetic basis for definitions of expendable life within the modern eugenics movement. With this new, secure anchoring in the humanities, disability studies now emerges as a significant strain in contemporary theories of identity and social marginality.
Moving beyond the oversimplication that disabled people are marginalized and made invisible by able-ist assumptions and practices, the contributors demonstrate that representation is founded upon the perpetual exhibition of human anomalies. In this sense, all art can be said to migrate toward the "freakish" and the "grotesque." Such a project paradoxically makes disability the exception and the rule of the desire to represent that which has been traditionally out-of-bounds in polite discourse.
The Body and Physical Difference has relevance across a wide range of academic specialties such as cultural studies, the sociology of medicine, history, literature and medicine, the allied health professions, rehabilitation, aesthetics, philosophical discourses of the body, literary and film studies, and narrative theory.
David T. Mitchell is Assistant Professor of English, Northern Michigan University. Sharon L. Snyder teaches film and literature at Northern Michigan University.
"Professor Davidson---an accomplished literary critic---offers a focused and balanced analysis of poetry, film, and the arts honed with his excellent knowledge of the latest advances in disability studies. He is brilliant at reading texts in a sophisticated and aesthetically pleasurable way, making Concerto for the Left Hand one of the smartest books to date in disability studies."
---Lennard Davis, University of Illinois, Chicago
"Moving elegantly among social theorists and cultural texts, Davidson exemplifies and propels an ethical-aesthetic model for criticism. Davidson asks continuously and with a committed intensity 'where a disability ends and the social order begins' . . . this book brings the study of poetry and poetics into the twenty-first century."
---Rachel Blau DuPlessis, Temple University
Concerto for the Left Hand is at the cutting edge of the expanding field of disability studies, offering a wide range of essays that investigate the impact of disability across various art forms---including literature, performance, photography, and film. Rather than simply focusing on the ways in which disabled persons are portrayed, Michael Davidson explores how the experience of disability shapes the work of artists and why disability serves as a vital lens through which to interpret modern culture. Covering an eclectic range of topics---from the phantom missing limb in film noir to the poetry of American Sign Language---this collection delivers a unique and engaging assessment of the interplay between disability and aesthetics.
Written in a fluid, accessible style, Concerto for the Left Hand will appeal to both specialists and general audiences. With its interdisciplinary approach, this book should appeal not only to scholars of disability studies but to all those working in minority art, deaf studies, visual culture, and modernism.
Michael Davidson is Professor of American Literature at the University of California, San Diego. His other books include Guys Like Us: Citing Masculinity in Cold War Poetics and Ghostlier Demarcations: Modern Poetry and the Material World.
Cultural Locations of Disability
Sharon L. Snyder and David T. Mitchell University of Chicago Press, 2006 Library of Congress HV1568.S69 2006 | Dewey Decimal 305.908
In Cultural Locations of Disability, Sharon L. Snyder and David T. Mitchell trace how disabled people came to be viewed as biologically deviant. The eugenics era pioneered techniques that managed "defectives" through the application of therapies, invasive case histories, and acute surveillance techniques, turning disabled persons into subjects for a readily available research pool. In its pursuit of normalization, eugenics implemented disability regulations that included charity systems, marriage laws, sterilization, institutionalization, and even extermination. Enacted in enclosed disability locations, these practices ultimately resulted in expectations of segregation from the mainstream, leaving today's disability politics to focus on reintegration, visibility, inclusion, and the right of meaningful public participation.
Snyder and Mitchell reveal cracks in the social production of human variation as aberrancy. From our modern obsessions with tidiness and cleanliness to our desire to attain perfect bodies, notions of disabilities as examples of human insufficiency proliferate. These disability practices infuse more general modes of social obedience at work today. Consequently, this important study explains how disabled people are instrumental to charting the passage from a disciplinary society to one based upon regulation of the self.
Immigration history has largely focused on the restriction of immigrants by race and ethnicity, overlooking disability as a crucial factor in the crafting of the image of the “undesirable immigrant.” Defectives in the Land, Douglas C. Baynton’s groundbreaking new look at immigration and disability, aims to change this.
In the late nineteenth and early twentieth centuries, Baynton explains, immigration restriction in the United States was primarily intended to keep people with disabilities—known as “defectives”—out of the country. The list of those included is long: the deaf, blind, epileptic, and mobility impaired; people with curved spines, hernias, flat or club feet, missing limbs, and short limbs; those unusually short or tall; people with intellectual or psychiatric disabilities; intersexuals; men of “poor physique” and men diagnosed with “feminism.” Not only were disabled individuals excluded, but particular races and nationalities were also identified as undesirable based on their supposed susceptibility to mental, moral, and physical defects.
In this transformative book, Baynton argues that early immigration laws were a cohesive whole—a decades-long effort to find an effective method of excluding people considered to be defective. This effort was one aspect of a national culture that was increasingly fixated on competition and efficiency, anxious about physical appearance and difference, and haunted by a fear of hereditary defect and the degeneration of the American race.
Passing—an act usually associated with disguising race—also relates to disability. Whether a person classified as mentally ill struggles to suppress aberrant behavior to appear "normal" or a person falsely claims a disability to gain some advantage, passing is a pervasive and much discussed phenomenon. Nevertheless, Disability and Passing is the first anthology to examine this issue.
The editors and contributors to this volume explore the intersections of disability, race, gender, and sexuality as these various aspects of identity influence each other and make identity fluid. They argue that the line between disability and normality is blurred, discussing disability as an individual identity and as a social category. And they discuss the role of stigma in decisions about whether or not to pass.
Focusing on the United States from the nineteenth century to the present, the essays in Disability and Passing speak to the complexity of individual decisions about passing and open the conversation for broader discussion.
Contributors include: Dea Boster, Allison Carey, Peta Cox, Kristen Harmon, David Linton, Michael Rembis, and the editors.
In the past decade, the mass media discovered disability. Spurred by the box-office appeal of superstars such as the late Christopher Reeve, Michael J. Fox, Stephen Hawking, and others, and given momentum by the success of Oscar-winning movies, popular television shows, best-selling books, and profitable websites, major media corporations have reversed their earlier course of hiding disability, bringing it instead to center stage. Yet depictions of disability have remained largely unchanged since the 1920s. Focusing almost exclusively on the medical aspect of injury or illness, the disability profile in fact and fiction leads inevitably to an inspiring moment of “overcoming.” According to Riley, this cliché plays well with a general audience, but such narratives, driven by prejudice and pity, highlight the importance of “fixing” the disability and rendering the “sufferer” as normal as possible. These stories are deeply offensive to persons with disabilities. Equally important, misguided coverage has adverse effects on crucial aspects of public policy, such as employment, social services, and health care. Powerful and influential, the media is complicit in this distortion of disability issues that has proven to be a factor in the economic and social repression of one in five Americans. Newspapers and magazines continue to consign disability stories to the “back of the book” health or human-interest sections, using offensive language that has long been proscribed by activists. Filmmakers compound the problem by featuring angry misfits or poignant heroes of melodramas that pair love and redemption. Publishers churn out self-help titles and memoirs that milk the disability theme for pathos. As Riley points out, all branches of the media are guilty of the same crude distillation of the story to serve their own, usually fiscal, ends. Riley’s lively inside investigation illuminates the extent of the problem while pinpointing how writers, editors, directors, producers, filmmakers, advertisers and the executives who give their marching orders go wrong, or occasionally get it right. Through a close analysis of the technical means of representation, in conjunction with the commentary of leading voices in the disability community, Riley guides future coverage to a more fair and accurate way of putting the disability story on screen or paper. He argues that with the “discovery” by Madison Avenue that the disabled community is a major consumer niche, the economic rationale for more sophisticated coverage is at hand. It is time, says Riley, to cut through the accumulated stereotypes and find an adequate vocabulary that will finally represent the disability community in all its vibrant and fascinating diversity.
An examination of US public policymaking and securing rights for people with disabilities.
Following on the heels of other Civil Rights movements, disability rights laws emerged in the late 1960s and early 1970s. Often these laws were more symbolic than precise in terms of objectives and strategies to guide the implementation of antidiscrimination policies. Policy refinement, the process of translating legislative mandates into strategies and procedures to govern administrative action, is both dynamic and controversial.
The premise of Disability, Civil Rights, and Public Policy is that implementation policies in these areas evolved through protracted political struggles among a variety of persons and groups affected by disability rights laws. Efforts to influence policies extended far beyond the process of legislative enactment and resulted in struggles that were played out in the courts and in the executive branch. Included within this examination of federal disability rights laws are the role of symbolic politics, the strengths and weaknesses of contemporary models used for the study of policy implementation, and the politics of administrative policymaking.
"Comprehensively researched, abundantly illustrated and written in accessible and engaging prose . . . With great skill, Poore weaves diverse types of evidence, including historical sources, art, literature, journalism, film, philosophy, and personal narratives into a tapestry which illuminates the cultural, political, and economic processes responsible for the marginalization, stigmatization, even elimination, of disabled people---as well as their recent emancipation."
---Disability Studies Quarterly
"A major, long-awaited book. The chapter on Nazi images is brilliant---certainly the best that has been written in this arena by any scholar."
---Sander L. Gilman, Emory University
"An important and pathbreaking book . . . immensely interesting, it will appeal not only to students of twentieth-century Germany but to all those interested in the growing field of disability studies."
---Robert C. Holub, University of Tennessee
Disability in Twentieth-Century German Culture covers the entire scope of Germany's most tragic and tumultuous century---from the Weimar Republic to the current administration---revealing how central the notion of disability is to modern German cultural history. By examining a wide range of literary and visual depictions of disability, Carol Poore explores the contradictions of a nation renowned for its social services programs yet notorious for its history of compulsory sterilization and eugenic dogma. This comprehensive volume focuses particular attention on the horrors of the Nazi era, when those with disabilities were considered "unworthy of life," but also investigates other previously overlooked topics including the exile community's response to disability, socialism and disability in East Germany, current bioethical debates, and the rise and gains of Germany's disability rights movement.
Richly illustrated, wide-ranging, and accessible, Disability in Twentieth-Century German Culture gives all those interested in disability studies, German studies, visual culture, Nazi history, and bioethics the opportunity to explore controversial questions of individuality, normalcy, citizenship, and morality. The book concludes with a memoir of the author's experiences in Germany as a person with a disability.
Carol Poore is Professor of German Studies at Brown University.
A volume in the series Corporealities: Discourses of Disability
"Insightful and meticulously researched . . . Using disability as a concept, symbol, and lived experience, the author offers valuable new insights into Germany's political, economic, social, and cultural character . . . Demonstrating the significant ‘cultural phenomena' of disability prior to and long after Hitler's reign achieves several important theoretical and practical aims . . . Highly recommended."
In 1988, Sandi and Larry Zobrest sued a suburban Tucson, Arizona, school district that had denied their hearing-impaired son a taxpayer-funded interpreter in his Roman Catholic high school. The Catalina Foothills School District argued that providing a public resource for a private, religious school created an unlawful crossover between church and state. The Zobrests, however, claimed that the district had infringed on both their First Amendment right to freedom of religion and the Individuals with Disabilities Education Act (IDEA).
Bruce J. Dierenfield and David A. Gerber use the Zobrests' story to examine the complex history and jurisprudence of disability accommodation and educational mainstreaming. They look at the family's effort to acquire educational resources for their son starting in early childhood and the choices the Zobrests made to prepare him for life in the hearing world rather than the deaf community. Dierenfield and Gerber also analyze the thorny church-state issues and legal controversies that informed the case, its journey to the U.S. Supreme Court, and the impact of the high court's ruling on the course of disability accommodation and religious liberty.
The Americans with Disabilities Act (ADA) of 1990 was intended to send a clear message to society that discrimination on the basis of disability is unacceptable. As with most civil rights laws, the courts were given primary responsibility for implementing disability rights policy.
Mezey argues that the act has not fulfilled its potential primarily because of the judiciary's "disabling interpretations" in adjudicating ADA claims. In the decade of litigation following the enactment of the ADA, judicial interpretation of the law has largely constricted the parameters of disability rights and excluded large numbers of claimants from the reach of the law. The Supreme Court has not interpreted the act broadly, as was intended by Congress, and this method of decision making was for the most part mirrored by the courts below. The high court's rulings to expand state sovereign immunity and insulate states from liability in damage suits has also caused claimants to become enmeshed in litigation and has encouraged defendants to challenge other laws affecting disability rights. Despite the law's strong civil rights rhetoric, disability rights remain an imperfectly realized goal.
Presenting thirteen essays, editors James C. Wilson and Cynthia Lewiecki-Wilson unite the fields of disability studies and rhetoric to examine connections between disability, education, language, and cultural practices. Bringing together theoretical and analytical perspectives from rhetorical studies and disability studies, these essays extend both the field of rhetoric and the newer field of disability studies.
The contributors span a range of academic fields including English, education, history, and sociology. Several contributors are themselves disabled or have disabled family members. While some essays included in this volume analyze the ways that representations of disability construct identity and attitudes toward the disabled, other essays use disability as a critical modality to rethink economic theory, educational practices, and everyday interactions. Among the disabilities discussed within these contexts are various physical disabilities, mental illness, learning disabilities, deafness, blindness, and diseases such as multiple sclerosis and AIDS.
The Americans with Disabilities Act of 1990 (ADA) was heralded by its congressional sponsors as an "emancipation proclamation" for people with disabilities and as the most important civil rights legislation passed in a generation. Employment, Disability, and the Americans with Disabilities Act offers a meticulously documented assessment of what has occurred since the ADA's enactment. In reasoned, empirically based articles, contributors from law, health policy, government, and business reveal the unsoundness of charges from the right that the ADA will bankrupt industry and assumptions on the left that the ADA will prove ineffective in helping those with disabilities enter and remain in the workforce.
First published in 1999, the groundbreaking Exile and Pride is essential to the history and future of disability politics. Eli Clare's revelatory writing about his experiences as a white disabled genderqueer activist/writer established him as one of the leading writers on the intersections of queerness and disability and permanently changed the landscape of disability politics and queer liberation. With a poet's devotion to truth and an activist's demand for justice, Clare deftly unspools the multiple histories from which our ever-evolving sense of self unfolds. His essays weave together memoir, history, and political thinking to explore meanings and experiences of home: home as place, community, bodies, identity, and activism. Here readers will find an intersectional framework for understanding how we actually live with the daily hydraulics of oppression, power, and resistance. At the root of Clare's exploration of environmental destruction and capitalism, sexuality and institutional violence, gender and the body politic, is a call for social justice movements that are truly accessible to everyone. With heart and hammer, Exile and Pride pries open a window onto a world where our whole selves, in all their complexity, can be realized, loved, and embraced.
Foucault and Feminist Philosophy of Disability is a distinctive contribution to growing discussions about how power operates within the academic field of philosophy. By combining the work of Michel Foucault, the insights of philosophy of disability and feminist philosophy, and data derived from empirical research, Shelley L. Tremain compellingly argues that the conception of disability that currently predominates in the discipline of philosophy, according to which disability is a natural disadvantage or personal misfortune, is inextricably intertwined with the underrepresentation of disabled philosophers in the profession of philosophy. Against the understanding of disability that prevails in subfields of philosophy such as bioethics, cognitive science, ethics, and political philosophy, Tremain elaborates a new conception of disability as a historically specifi c and culturally relative apparatus of power. Although the book zeros in on the demographics of and biases embedded in academic philosophy, it will be invaluable to everyone who is concerned about the social, economic, institutional, and political subordination of disabled people.
Foucault and the Government of Disability considers the continued relevance of Foucault to disability studies, as well as the growing significance of disability studies to understandings of Foucault. A decade ago, this international collection provocatively responded to Foucault’s call to question what is regarded as natural, inevitable, ethical, and liberating. The book’s contributors draw on Foucault to scrutinize a range of widely endorsed practices and ideas surrounding disability, including rehabilitation, community care, impairment, normality and abnormality, inclusion, prevention, accommodation, and special education. In this revised and expanded edition, four new essays extend and elaborate the lines of inquiry by problematizing (to use Foucault’s term) the epistemological, political, and ethical character of the supercrip, the racialized war on autism, the performativity of intellectual disability, and the potent mixture of neoliberalism and biopolitics in the context of physician-assisted suicide.
“[A]n important, prescient, and necessary contribution…a kind of litmus test for the efficacy of Foucault’s concepts in the study of disability, concepts that lead to a refusal of the biological essentialism implied in the disability/impairment binary.”
“Tremain has done an exceptional job at organizing and procuring important, rigorously argued, and entertaining essays…. This book should be a mandatory read for anyone interested in contemporary philosophical debates surrounding the experience of disability."
—Essays in Philosophy
“A beautiful exploration of how Foucault’s analytics of power and genealogies of discursive knowledges can open up new avenues for thinking critically about phenomena that many of us take to be inevitable and thus new ways of resisting and possibly at times redirecting the forces that shape our lives. Every scholar, every person with an interest in Foucault or in political theory generally, needs to read this book.”
—Ladelle McWhorter, University of Richmond
Foucault and the Government of Disability is the first book-length investigation of the relevance and importance of the ideas of Michel Foucault to the field of disability studies-and vice versa. Over the last thirty years, politicized conceptions of disability have precipitated significant social change, including the landmark Americans with Disabilities Act in 1990, the redesign of urban landscapes, the appearance of closed-captioning on televisions, and the growing recognition that disabled people constitute a marginalized and disenfranchised constituency.
The provocative essays in this volume respond to Foucault's call to question what is regarded as natural, inevitable, ethical, and liberating, while they challenge established understandings of Foucault's analyses and offer fresh approaches to his work. The book's roster of distinguished international contributors represents a broad range of disciplines and perspectives, making this a timely and necessary addition to the burgeoning field of disability studies.
Pulitzer Prize-winning author Louis Menand begins this wide-ranging volume with an essay that extols diversity and warns of the dangers of modifying the human genome. Nora Groce reviews the ways that societies have defined disability and creates an interpretive framework for discussing the relationship between culture and disability.
In essays devoted to historical perspective, Brian H. Greenwald comments upon the real “toll” taken by A. G. Bell’s insistence upon oralism, while Joseph J. Murray weighs the nineteenth-century debate over whether deaf-deaf marriages should be encouraged. John S. Schuchman’s chilling account of deafness and eugenics in the Nazi era adds wrenching reinforcement to the impetus to include disabled people in genetics debates.
Mark Willis offers an intensely personal reflection on the complexities of genetic alteration, addressing both his heart condition and his blindness in surprisingly different ways. Anna Middleton extends Willis’s concepts in her discussion of couples currently considering the use of genetic knowledge and technology to select for or against a gene that causes deafness.
In the part on the science of genetics, Orit Dagan, Karen B. Avraham, Kathleen S. Arnos, and Arti Pandya clarify the choices presented by genetic engineering, and geneticist Walter E. Nance emphasizes the importance of science in offering individuals knowledge from which they can fashion their own decisions. In the concluding section, Christopher Krentz raises moral questions about the ever-continuing search for human perfection, and Michael Bérubé argues that disability should be considered democratically to ensure full participation of disabled people in all decisions that might affect them.
The first book to attempt to provide a framework for analyzing disability through the ages, Henri-Jacques Stiker's now classic A History of Disability traces the history of western cultural responses to disability, from ancient times to the present. The sweep of the volume is broad; from a rereading and reinterpretation of the Oedipus myth to legislation regarding disability, Stiker proposes an analytical history that demonstrates how societies reveal themselves through their attitudes towards disability in unexpected ways. Through this history, Stiker examines a fundamental issue in contemporary Western discourse on disability: the cultural assumption that equality/sameness/similarity is always desired by those in society. He highlights the consequences of such a mindset, illustrating the intolerance of diversity and individualism that arises from placing such importance on equality. Working against this thinking, Stiker argues that difference is not only acceptable, but that it is desirable, and necessary.
This new edition of the classic volume features a new foreword by David T. Mitchell and Sharon L. Snyder that assesses the impact of Stiker’s history on Disability Studies and beyond, twenty years after the book’s translation into English. The book will be of interest to scholars of disability, historians, social scientists, cultural anthropologists, and those who are intrigued by the role that culture plays in the development of language and thought surrounding people with disabilities.
A History of Disability
Henri-Jacques Stiker University of Michigan Press, 2000 Library of Congress HV1552.S8413 1999 | Dewey Decimal 362.409
The increasing numbers of scholars, policy-makers, and political activists who are concerned with questions of physical and cognitive disability will warmly welcome Henri-Jacques Stiker's book, the first to attempt to provide a framework for analyzing disability through the ages. Published in 1997 in France as Corps infirmes et sociétés and available now in an excellent English translation, the book traces the history of western cultural responses to disability, from ancient times to the present.
In this volume, Stiker examines a fundamental issue in contemporary Western discourse on disability: the cultural assumption that equality/sameness/similarity is always desired by those in society. He highlights the consequences of such a mindset, illustrating the intolerance of diversity and individualism that arises from placing such importance on equality. Importantly, Stiker does not hesitate to assert his own stance on the issues he discusses: that difference is not only acceptable, but that it is desirable, that it is necessary.
The author goes beyond anecdotal history to traverse a little known history, penetrating to the heart of collective attitudes and reflecting on elements of policy. The sweep is broad; from a rereading and reinterpretation of the Oedipus myth to current legislation regarding disablity, he proposes an analytical history that demonstrates how societies reveal themselves through their attitudes towards disability, at times in unexpected ways, since the study of detail is often the best entry into the whole of a culture. The book will be of interest to scholars of disability, historians, social scientists, cultural anthropologists, and those who are intrigued by the role that culture plays in the development of language and thought surrounding the disabled.
The Jewish religion owns a virtually uninterrupted record of scripture and commentary dating back to 1,000 B.C.E. (B.C.), portions of which allow the new book Judaism and Disability: Portrayals in Ancient Texts from the Tanach through the Bavli to document attitudes toward disabled people in the earliest centuries of this ancient culture. Abrams examines the Tanach, the Hebrew acronym for the Jewish Bible, including passages from the Torah, Prophets, and Writings, and subsequent commentaries up to and through the Bavli, the Talmud of Babylonia written between the 5th and 7th centuries C.E. (A.D.).
In Judaism and Disability, the archaic portrayals of mentally ill, mentally retarded, physically affected, deaf, blind, and other disabled people reflect the sharp contrast they presented compared to the unchanging Judaic ideal of the “perfect priest.” All of these sources describe this perfection as embodied in a person who is male, free, unblemished, with da’at (cognition that can be communicated), preferably learned, and a priest. The failure to have da’at stigmatized disabled individuals, who were also compromised by the treatment they received from nondisabled people, who were directing and constraining.
As the Judaic ideal transformed from the bodily perfection of the priest in the cult to intellectual prowess in the Diaspora, a parallel change of attitudes toward disabled persons gradually occurred. The reduced emphasis upon physical perfection as a prerequisite for a relationship with God eventually enabled the enfranchisement of some disabled people and other minorities. Scholars, students, and other readers will find the engrossing process disclosed in Judaism and Disability one that they can apply to a variety of other disciplines.
With America on the brink of the largest number of older adults and persons with disabilities in the country’s history, the deceleration in housing production during the first decade of the twenty-first century, and a continued reliance on conventional housing policies and practices, a perfect storm has emerged in the housing industry. The lack of fit between the existing housing stock and the needs of the U.S. population is growing pronounced. Just as housing needed to be retooled at the end of WWII, the American housing industry is in dire need of change today. The South—with its high rates of poverty, older residents, residents with disabilities, extensive rural areas, and out-of-date housing policies and practices—serves as a “canary in the coal mine” for the impending, nationwide housing crisis. Just Below the Line discusses how reworking the policies and practices of the housing industry in the South can serve as a model for the rest of the nation in meeting the physical and social needs of persons with disabilities and aging boomers. Policy makers, designers, builders, realtors, advocates, and housing consumers will be able to use this book to promote the production of equitable housing nationwide.
Published in collaboration with the Fay Jones School of Architecture.
The ninth volume in the Sociolinguistics in Deaf Communities series focuses on forensic linguistics, a field created by noted linguist Roger Shuy, who begins the collection with an introduction of the issue of language problems experienced by minorities in legal settings. Attorney and linguist Rob Hoopes follows by showing how deaf people who use American Sign Language (ASL) are at a distinct disadvantage in legal situations, such as police interrogations, where only the feeblest of efforts are made to ensure that deaf suspects understand their constitutional rights.
Susan Mather, an associate professor of linguistics and interpretation, and Robert Mather, a federal disability rights attorney, examine the use of interpreters for deaf jurors during trials. They reveal the courts' gross misunderstandings of the important differences between ASL and Signed English. Sara S. Geer, an attorney at the National Association of the Deaf for 20 years, explains how the difficulty in understanding legal terminology in federal law is compounded for deaf people in every ordinary act, including applying for credit cards and filling out medical consent forms.
Language and the Law in Deaf Communities concludes with a chapter by George Castelle, Chief Public Defender in Charleston, West Virginia. Although he has no special knowledge about the legal problems of deaf people, Castelle offers another perspective based upon his extensive experience in practicing and teaching law.
Ceil Lucas is Professor of Linguistics in the Department of Linguistics and Interpretation at Gallaudet University.
ISBN 1-56368-143-9, 6 x 9 casebound, 200 pages, tables, references, index
The standard handbook on law affecting deaf and hard of hearing people has been completely rewritten and updated. The sixth edition of Legal Rights: The Guide for Deaf and Hard of Hearing People meticulously describes those statutes that prohibit discrimination against deaf and hard of hearing people, and any others with physical challenges. Written in easy-to-understand language, the new edition describes the core legislation and laws and their critical importance since their inception: The Rehabilitation Act of 1973, the Individuals with Disabilities Education Act (IDEA), and the Americans with Disabilities Act (ADA).
The new Legal Rights also explains the significant amendments to these laws, including the ADA Amendments Act (ADAAA) and new regulations to its Title II concerning public entities and Title III pertaining to public accommodations and commercial facilities. The reauthorization of IDEA expanded the No Child Left Behind Act requirement for highly qualified teachers to all students with disabilities. This new edition also tracks the trend of passing a Deaf and Hard of Hearing Children’s Bill of Rights in a growing number of state legislatures.
This completely new resource also delineates new legislation such as the Twenty-First Century Communications Video and Accessibility Act, which ensures access to the newest communications technology for deaf and hard of hearing people. Legal Rights also includes information on the use of interpreters in the legal system, securing its position as the most comprehensive reference of legal information for deaf and hard of hearing people now available.
Few people these days would oppose making the public realm of space, social services and jobs accessible to women and men with disabilities. But what about access to the private realm of desire and sexuality? How can one also facilitate access to that, in ways that respect the integrity of disabled adults, and also of those people who work with and care for them?
Loneliness and Its Opposite documents how two countries generally imagined to be progressive engage with these questions in very different ways. Denmark and Sweden are both liberal welfare states, but they diverge dramatically when it comes to sexuality and disability. In Denmark, the erotic lives of people with disabilities are acknowledged and facilitated. In Sweden, they are denied and blocked. Why do these differences exist, and how do both facilitation and hindrance play out in practice?
Loneliness and Its Opposite charts complex boundaries between private and public, love and sex, work and intimacy, and affection and abuse. It shows how providing disabled adults with access to sexual lives is not just crucial for a life with dignity. It is an issue of fundamental social justice with far reaching consequences for everyone.
Group homes emerged in the United States in the 1970s as a solution to the failure of the large institutions that, for more than a century, segregated and abused people with intellectual and developmental disabilities. Yet community services have not, for the most part, delivered on the promises of rights, self-determination, and integration made more than thirty years ago, and critics predominantly portray group homes simply as settings of social control.
Making Life Work is a clear-eyed ethnography of a New York City group home based on more than a year of field research. Jack Levinson shows how the group home needs the knowledgeable and voluntary participation of residents and counselors alike. The group home is an actual workplace for counselors, but for residents group home work involves working on themselves to become more autonomous. Levinson reveals that rather than being seen as the antithesis of freedom, the group home must be understood as representing the fundamental dilemmas between authority and the individual in contemporary liberal societies. No longer inmates but citizens, these people who are presumed—rightly or wrongly—to lack the capacity for freedom actually govern themselves.
Levinson, a former group home counselor, demonstrates that the group home depends on the very capacities for independence and individuality it cultivates in the residents. At the same time, he addresses the complex relationship between services and social control in the history of intellectual and developmental disabilities, interrogating broader social service policies and the role of clinical practice in the community.
While welfare has been subject to pronounced criticism throughout the twentieth century, social insurance has consistently enjoyed the overwhelming support of European policy makers and citizens. This volume argues that the emergence of social insurance represents a paradigmatic shift in modern understandings of health, work, political participation, and government. By institutionalizing compensation, social insurance transformed it into a right that the employed population quickly came to assume.
Theoretically informed and based on intensive archival research on disability insurance records, most of which have never been used by historians, the book considers how social science and political philosophy combined to give shape to the idea of a "social" insurance in the nineteenth century; the process by which social insurance gave birth to modern notions of "disability" and "rehabilitation"; and the early-twentieth-century development of political action groups for the disabled.
Most earlier histories of German social insurance have been legislative histories that stressed the system's coercive features and functions. Making Security Social, by contrast, emphasizes the administrative practices of everyday life, the experience of consumers, and the ability of workers not only to resist, but to transform, social insurance bureaucracy and political debate. It thus demonstrates that social insurance was pivotal in establishing a general attitude of demand, claim, and entitlement as the primary link between the modern state and those it governed.
In addition to historians of Germany, Making Security Social will attract researchers across disciplines who are concerned with public policy, disability studies, and public health.
Greg Eghigian is Associate Professor of History, Penn State University.
The Matter of Disability returns disability to its proper place as an ongoing historical process of corporeal, cognitive, and sensory mutation operating in a world of dynamic, even cataclysmic, change. The book’s contributors offer new theorizations of human and nonhuman embodiments and their complex evolutions in our global present, in essays that explore how disability might be imagined as participant in the “complex elaboration of difference,” rather than something gone awry in an otherwise stable process. This alternative approach to materiality sheds new light on the capacities that exist within the depictions of disability that the book examines, including Spider-Man, Of Mice and Men, and Bloodchild.
When ethnomethodologist Albert Robillard began to suffer the symptoms of motor-neuron disease, he realized he was a living laboratory for revealing the countless taken-for-granted methods people use to produce being together. Meaning of a Disability is a detailed autobiography of the experiences and trained observations of a university professor who became paralyzed in mid-life.
With his loss of speech, Robillard was forced to communicate through a lip-reading system developed by his wife and student assistants. Restricted by this form of communication and his paralysis, he soon learned the frustrations of making his meaning known. Hospital nurses wrongly anticipated his words. Those who translated for him inevitably distorted his meaning. Most of all, the casual pace of conversational give-and-take was disrupted. Old friends would leave before Robillard could provide the expected interactional response.
Finding himself isolated due to his lack of both mobility and vocalization, Robillard threw himself into his academic work and began to develop settings and methods where he could satisfactorily interact with others. A researcher and writer experienced in describing the bodily and verbal methods used to coordinate and construct the most ordinary of social forms, Robillard joins in this book both his years of sociological training and his time with illness to talk with moving and illuminating analysis about a broad range of matters. Moving gracefully from examinations of narratives about disability and illness, the stigmatizing things that healthcare providers unwittingly say to their patients, and communication problems in the intensive care unit, to more personal reflections on anger, isolation, and stories of tragedy, Robillard also discusses disability in the workplace and such seemingly simple topics as computers and vacations. Meaning of a Disability is the personal story of a highly trained observer forced to confront simultaneously the limits of the disabled person's social world and the unspoken assumptions about meaningful interaction -- as he struggles with the daily difficulties of maintaining his identity.
Meaning of a Disability will interest a wide audience, including healthcare professionals, disabled people, and caretakers as well as academics studying ethnomethodology, health and illness, conversation, symbolic interaction, storytelling, and most aspects of lived experience.
The Measure of Manliness is among the first books to focus on representations of disability in Victorian literature, showing that far from being marginalized or pathologized, disability was central to the narrative form of the mid-century novel. Mid-Victorian novels evidenced a proliferation of male characters with disabilities, a phenomenon that author Karen Bourrier sees as a response to the rise of a new Victorian culture of industry and vitality, and its corollary emphasis on a hardy, active manhood. The figure of the voluble, weak man was a necessary narrative complement to the silent, strong man. The disabled male embodied traditionally feminine virtues, softening the taciturn strong man, and eliciting emotional depths from his seemingly coarse muscular frame. Yet, the weak man was able to follow the strong man where female characters could not, to all-male arenas such as the warehouse and the public school.
The analysis yokes together historical and narrative concerns, showing how developments in nineteenth-century masculinity led to a formal innovation in literature: the focalization or narration of the novel through the perspective of a weak or disabled man. The Measure of Manliness charts new territory in showing how feeling and loquacious bodies were increasingly seen as sick bodies throughout the nineteenth century. The book will appeal to those interested in disability studies, gender and masculinity studies, the theorization of sympathy and affect, the recovery of women’s writing and popular fiction, the history of medicine and technology, and queer theory.
The personal odyssey of a man with a disability, this passionate book tries to tell as well as analyze what it is like to have a disability in a world that values vigor and health. Zola writes, "Missing Pieces is an unraveling of a social problem in the manner of Black Like Me. Like its author, I, too, am a trained social observer, but for me 'passing' was not an issue. For I already have the stigmata of the disabled—the braces, the limp, the cane—though I have spent much of my life denying their existence." The author started out in the role of a social scientist on a seven-day excursion to acquaint himself with an extraordinary experiment in living—Het Dorp, one of the few places in the world designed to promote "the optimum happiness" of those with severe physical disabilities. Neither a medial center nor a nursing home, Het Dorp is a village in the western-most part of the Netherlands. What began as a sociological attempt to describe this unusual setting became, through the author's growing awareness, what can only be called a socio-autobiography. Resuming his prior dependence on a wheelchair, the author experienced his own transformation from someone who is "normal" and "valid" to someone who is "invalid." The routine of Het Dorp became his: he lived in an architecturally modified home, visited the workshops, and shared meals, social events, conversation, and perceptions with the remarkably diverse residents. The author confronts some rarely discussed issues—the self-image of a person with a chronic disability, how one fills one's time, how one deals with authority and dependence, and love and sex. Missing Pieces offers striking insights into an aspect of the human condition shared by nearly 30 million Americans. It is must-read for the general reader, as well as for the rehabilitation counselor, social worker, or social scientist.
Monstrous Kinds is the first book to explore textual representations of disability in the global Renaissance. Elizabeth B. Bearden contends that monstrosity, as a precursor to modern concepts of disability, has much to teach about our tendency to inscribe disability with meaning. Understanding how early modern writers approached disability not only provides more accurate genealogies of disability, but also helps nuance current aesthetic and theoretical disability formulations.
The book analyzes the cultural valences of early modern disability across a broad national and chronological span, attending to the specific bodily, spatial, and aesthetic systems that contributed to early modern literary representations of disability. The cross section of texts (including conduct books and treatises, travel writing and wonder books) is comparative, putting canonical European authors such as Castiglione into dialogue with transatlantic and Anglo-Ottoman literary exchange. Bearden questions grand narratives that convey a progression of disability from supernatural marvel to medical specimen, suggesting that, instead, these categories coexist and intersect.
Musical talent in Western culture is regarded as an extraordinary combination of technical proficiency and interpretative sensitivity. In Music, Disability, and Society, Alex Lubet challenges the rigid view of technical skill and writes about music in relation to disability studies. He addresses the ways in which people with disabilities are denied the opportunity to participate in music.
Elaborating on the theory of "social confluence," Lubet provides a variety of encounters between disability and music to observe radical transformations of identity. Considering hand-injured and one-handed pianists; the impairments of jazz luminaries Django Reinhardt, Horace Parlan, and "Little" Jimmy Scott; and the "Blind Orchestra" of Cairo, he shows how the cultural world of classical music contrasts sharply with that of jazz and how musicality itself is regarded a disability in some religious contexts. Music, Disability, and Society also explains how language difference can become a disability for Asian students in American schools of music, limiting their education and careers.
Lubet offers pungent criticism of the biases in music education and the music profession, going so far as to say that culture disables some performers by adhering to rigid notions of what a musician must look like, how music must be played, who may play it, and what (if any) is the legitimate place of music in society. In Music, Disability, and Society, he convincingly argues that where music is concerned, disability is a matter of culture, not physical impairment.
Narrative Prosthesis: Disability and the Dependencies of Discourse develops a narrative theory of the pervasive use of disability as a device of characterization in literature and film. It argues that, while other marginalized identities have suffered cultural exclusion due to a dearth of images reflecting their experience, the marginality of disabled people has occurred in the midst of the perpetual circulation of images of disability in print and visual media. The manuscript's six chapters offer comparative readings of key texts in the history of disability representation, including the tin soldier and lame Oedipus, Montaigne's "infinities of forms" and Nietzsche's "higher men," the performance history of Shakespeare's Richard III, Melville's Captain Ahab, the small town grotesques of Sherwood Anderson's Winesburg, Ohio and Katherine Dunn's self-induced freaks in Geek Love.
David T. Mitchell is Associate Professor of Literature and Cultural Studies, Northern Michigan University. Sharon L. Snyder is Assistant Professor of Film and Literature, Northern Michigan University.
An intersectional study of New Testament and noncanonical literature
Anna Rebecca Solevåg explores how nonnormative bodies are presented in early Christian literature through the lens of disability studies. In a number of case studies, Solevåg shows how early Christians struggled to come to terms with issues relating to body, health, and dis/ability in the gospel stories, apocryphal narratives, Pauline letters, and patristic expositions. Solevåg uses the concepts of narrative prosthesis, gaze and stare, stigma, monster theory, and crip theory to examine early Christian material to reveal the multiple, polyphonous, contradictory ways in which nonnormative bodies appear.
Case studies that reveal a variety of understandings, attitudes, medical frameworks, and taxonomies for how disabled bodies were interpreted
A methodology that uses disability as an analytical tool that contributes insights about cultural categories, ideas of otherness, and social groups’ access to or lack of power
An intersectional perspective drawing on feminist, gender, queer, race, class, and postcolonial studies
When three deaf men in the 1960s invented and sold TTYs, the first teletypewriting devices that allowed deaf people to communicate by telephone, they started a telecommunications revolution for deaf people throughout America. A New Civil Right: Telecommunications Equality for Deaf and Hard of Hearing Americans chronicles the history of this movement, which lagged behind new technical developments decades after the advent of TTYs.
In this highly original work, Author Karen Peltz Strauss reveals how the paternalism of the hearing-oriented telecommunications industries slowed support for technology for deaf users. Throughout this comprehensive account, she emphasizes the grassroots efforts behind all of the eventual successes. A New Civil Right recounts each advance in turn, such as the pursuit of special customer premises equipment (SCPE) from telephone companies; the Telecommunications Act of 1982 and the Telecommunications Accessibility Enhancement Act of 1988 and the 1990 Americans with Disabilities Act, which required nationwide relay telephone services for deaf and hard of hearing users.
Strauss painstakingly details how all of these advances occurred incrementally, first on local and state levels, and later through federal law. It took exhaustive campaigning to establish 711 for nationwide relay dialing, while universal access to television captioning required diligent legal and legislative work to pass the Decoder Circuitry Act in 1990. The same persistence resulted in the enactment of the Telecommunications Act of 1996, which required all off-the-shelf communications equipment, including new wireless technology, to be readily accessible to deaf users.
Novel Bodies examines how disability shapes the British literary history of sexuality. Jason Farr shows that various eighteenth-century novelists represent disability and sexuality in flexible ways to reconfigure the political and social landscapes of eighteenth-century Britain. In imagining the lived experience of disability as analogous to—and as informed by—queer genders and sexualities, the authors featured in Novel Bodies expose emerging ideas of able-bodiedness and heterosexuality as interconnected systems that sustain dominant models of courtship, reproduction, and degeneracy. Further, Farr argues that they use intersections of disability and queerness to stage an array of contemporaneous debates covering topics as wide-ranging as education, feminism, domesticity, medicine, and plantation life. In his close attention to the fiction of Eliza Haywood, Samuel Richardson, Sarah Scott, Maria Edgeworth, and Frances Burney, Farr demonstrates that disabled and queer characters inhabit strict social orders in unconventional ways, and thus opened up new avenues of expression for readers from the eighteenth century forward.
Published by Bucknell University Press. Distributed worldwide by Rutgers University Press.
Points of Contact brings together contributions by leading writers, artists, scholars, and critics to provide a remarkably broad and consistently engaging look at the intersection of disability and the arts. The contributions include essays and memoirs by a wide range of disabled and nondisabled writers, including Bell Gale Chevigny, Sandra Gilbert, Joseph Grigely, Georgina Kleege, Victoria Ann Lewis, Carol Poore, Tobin Siebers, and Rosemarie Garland Thomson among others; poetry by Brooke Horvath, Joan Seliger Sidney, William Stafford, and others; fiction by Stephen Dixon, Michael Downs, Georgina Kleege, Dallas Wiebe, and others.
The collection covers a broad range of subjects and concerns that lie at the intersection of disability and the arts, including fetal alcohol syndrome, education, and identity; representations of disability in the visual arts and the complicated position of the disabled spectator; the impact of cancer on the patient and the caregiver; the similarities between beauty pageants and freak shows; Alzheimer's disease; prosthetic devices; the mechanized disabled body; disability and performance; and profiles of Helen Keller and Annie Sullivan, Christopher Reeve, Franklin Roosevelt, and sado-masochistic performance artist Bob Flanagan.
Points of Contact: Disability, Art, and Culture was originally published as a special double issue of the well regarded literary magazine, the Michigan Quarterly Review. Now available in a single, convenient paperback volume, its broad range of perspectives on disability and its entertaining and engaging selections will appeal to general readers, scholars, and students alike.
Susan Crutchfield is lecturer in English, University of Michigan. Marcy Epstein teaches literature at The Roeper School and women's studies at Henry Ford Community College.
By focusing on the politics of disability as a pillar of Czechoslovak identity, The Politics of Disability in Interwar and Socialist Czechoslovakia: Segregating in the Name of the Nation reflects upon the vicissitudes of nation building over the twentieth century that led to extreme forms of institutional violence against minorities, mainly the Roma, such as forced sterilization. The authors trace the intersectionality of ethnicity and disability, which proliferated across diverse realms of public life, positioning the continuities and ruptures of interrogating propaganda and racial science during the interwar and post-war periods as establishing and reinforcing the border between a healthy Czech majority and a disabled Roma minority. The book critically revises this border that remains observable but unapproachable until it operates as a part of constructing the authenticity of a nation.
Liberal individualism, a foundational concept of American politics, assumes an essentially homogeneous population of independent citizens. When confronted with physical disability and the contradiction of seemingly unruly bodies, however, the public searches for a story that can make sense of the difference. The narrative that ensues makes "abnormality" an important part of the dialogue about what a genuine citizen is, though its role is concealed as an exception to the rule of individuality rather than a defining difference. Reading Embodied Citizenship brings disability to the forefront, illuminating its role in constituting what counts as U.S. citizenship.
Drawing from major figures in American literature, including Mark Twain, Flannery O'Connor, Carson McCullers, and David Foster Wallace, as well as introducing texts from the emerging canon of disability studies, Emily Russell demonstrates the place of disability at the core of American ideals. The narratives prompted by the encounter between physical difference and the body politic require a new understanding of embodiment as a necessary conjunction of physical, textual, and social bodies. Russell examines literature to explore and unsettle long-held assumptions about American citizenship.
This is a provocative look at writing by and about people with illness or disability—in particular HIV/AIDS, breast cancer, deafness, and paralysis—who challenge the stigmas attached to their conditions by telling their lives in their own ways and on their own terms. Discussing memoirs, diaries, collaborative narratives, photo documentaries, essays, and other forms of life writing, G. Thomas Couser shows that these books are not primarily records of medical conditions; they are a means for individuals to recover their bodies (or those of loved ones) from marginalization and impersonal medical discourse.
Responding to the recent growth of illness and disability narratives in the United States—such works as Juliet Wittman’s Breast Cancer Journal, John Hockenberry’s Moving Violations, Paul Monette’s Borrowed Time: An AIDS Memoir, and Lou Ann Walker’s A Loss for Words: The Story of Deafness in a Family—Couser addresses questions of both poetics and politics. He examines why and under what circumstances individuals choose to write about illness or disability; what role plot plays in such narratives; how and whether closure is achieved; who assumes the prerogative of narration; which conditions are most often represented; and which literary conventions lend themselves to representing particular conditions. By tracing the development of new subgenres of personal narrative in our time, this book explores how explicit consideration of illness and disability has enriched the repertoire of life writing. In addition, Couser’s discussion of medical discourse joins the current debate about whether the biomedical model is entirely conducive to humane care for ill and disabled people.
With its sympathetic critique of the testimony of those most affected by these conditions, Recovering Bodies contributes to an understanding of the relations among bodily dysfunction, cultural conventions, and identity in contemporary America.
Schooling and Disability
Edited by Douglas P. Biklen, Dianne L. Ferguson, and Alison Ford University of Chicago Press, 1989
Sex and Disability
Robert McRuer and Anna Mollow, eds. Duke University Press, 2012 Library of Congress HQ30.5.S46 2012 | Dewey Decimal 306.7087
The title of this collection of essays, Sex and Disability, unites two terms that the popular imagination often regards as incongruous. The major texts in sexuality studies, including queer theory, rarely mention disability, and foundational texts in disability studies do not discuss sex in much detail. What if "sex" and "disability" were understood as intimately related concepts? And what if disabled people were seen as both subjects and objects of a range of erotic desires and practices? These are among the questions that this collection's contributors engage. From multiple perspectives—including literary analysis, ethnography, and autobiography—they consider how sex and disability come together and how disabled people negotiate sex and sexual identities in ableist and heteronormative culture. Queering disability studies, while also expanding the purview of queer and sexuality studies, these essays shake up notions about who and what is sexy and sexualizable, what counts as sex, and what desire is. At the same time, they challenge conceptions of disability in the dominant culture, queer studies, and disability studies. Contributors. Chris Bell, Michael Davidson, Lennard J. Davis, Michel Desjardins, Lezlie Frye, Rachael Groner, Kristen Harmon, Michelle Jarman, Alison Kafer, Riva Lehrer, Nicole Markotić, Robert McRuer, Anna Mollow, Rachel O’Connell, Russell Shuttleworth, David Serlin, Tobin Siebers, Abby L. Wilkerson
Drawing on her own experiences with late-onset disability and its impact on her sex life, along with her expertise as a cultural critic, Jane Gallop explores how disability and aging work to undermine one's sense of self. She challenges common conceptions that equate the decline of bodily potential and ability with a permanent and irretrievable loss, arguing that such a loss can be both temporary and positively transformative. With Sexuality, Disability, and Aging, Gallop explores and celebrates how sexuality transforms and becomes more queer in the lives of the no longer young and the no longer able while at the same time demonstrating how disability can generate new forms of sexual fantasy and erotic possibility.
Given the explosion in recent years of scholarship exploring the ways in which disability is manifested and performed in numerous cultural spaces, it’s surprising that until now there has never been a single monograph study covering the important intersection of popular music and disability. George McKay’s Shakin’ All Over is a cross-disciplinary examination of the ways in which popular music performers have addressed disability: in their songs, in their live performances, and in various media presentations.
By looking closely into the work of artists such as Johnny Rotten, Neil Young, Johnnie Ray, Ian Dury, Teddy Pendergrass, Curtis Mayfield, and Joni Mitchell, McKay investigates such questions as how popular music works to obscure and accommodate the presence of people with disabilities in its cultural practice. He also examines how popular musicians have articulated the experiences of disability (or sought to pass), or have used their cultural arena for disability advocacy purposes.
"Thomas Couser's Signifying Bodies comes at a crucial moment when debates about physician assisted suicide, genetic engineering, and neo-natal screening are raising the question of what constitutes a 'life worth living' for persons with disabilities. Couser's work engages these debates by exploring the extensive number of personal narratives by or about persons with disabilities. As Couser brilliantly demonstrates through synoptic readings, these works challenge the 'preferred rhetorics' by which such narratives are usually written (triumphalist, gothic, nostalgic) while making visible the variegated nature of embodied life."
---Michael Davidson, University of California, San Diego
"Signifying Bodies shows us that life writing about disability is . . . everywhere. . . . From obituary to documentary film to ethnography to literary memoir to the law, the book casts a wide net, detailing how various written and filmed responses to disability both enact and resist conventional narrative patterns. [This] not only broadens our idea about where to look for life writing, but also demonstrates how thoroughly stereotypes about disability mediate our social and artistic languages---even when an author has (so-called) the best intentions."
---Susannah B. Mintz, Skidmore College
Memoirs have enjoyed great popularity in recent years, experiencing significant sales, prominent reviews, and diverse readerships. Signifying Bodies shows that at the heart of the memoir phenomenon is our fascination with writing that focuses on what it means to live in, or be, an anomalous body---in other words, what it means to be disabled. Previous literary accounts of the disabled body have often portrayed it as a stable entity possibly signifying moral deviance or divine disfavor, but contemporary writers with disabilities are defining themselves and depicting their bodies in new ways. Using the insights of disability studies and source material ranging from the Old and New Testaments to the works of authors like Lucy Grealy and Simi Linton and including contemporary films such as Million Dollar Baby, G. Thomas Couser sheds light on a broader cultural phenomenon, exploring topics such as the ethical issues involved in disability memoirs, the rhetorical patterns they frequently employ, and the complex relationship between disability narrative and disability law.
G. Thomas Couser is Professor of English at Hofstra University.
"Bold, deeply learned, and important, offering a provocative thesis that is worked out through legal and archival materials and in subtle and original readings of literary texts. Absolutely new in content and significantly innovative in methodology and argument, Stumbling Blocks Before the Blind offers a cultural geography of medieval blindness that invites us to be more discriminating about how we think of geographies of disability today."
---Christopher Baswell, Columbia University
"A challenging, interesting, and timely book that is also very well written . . . Wheatley has researched and brought together a leitmotiv that I never would have guessed was so pervasive, so intriguing, so worthy of a book."
---Jody Enders, University of California, Santa Barbara
Stumbling Blocks Before the Blind presents the first comprehensive exploration of a disability in the Middle Ages, drawing on the literature, history, art history, and religious discourse of England and France. It relates current theories of disability to the cultural and institutional constructions of blindness in the eleventh through fifteenth centuries, examining the surprising differences in the treatment of blind people and the responses to blindness in these two countries. The book shows that pernicious attitudes about blindness were partially offset by innovations and ameliorations---social; literary; and, to an extent, medical---that began to foster a fuller understanding and acceptance of blindness.
A number of practices and institutions in France, both positive and negative---blinding as punishment, the foundation of hospices for the blind, and some medical treatment---resulted in not only attitudes that commodified human sight but also inhumane satire against the blind in French literature, both secular and religious. Anglo-Saxon and later medieval England differed markedly in all three of these areas, and the less prominent position of blind people in society resulted in noticeably fewer cruel representations in literature.
This book will interest students of literature, history, art history, and religion because it will provide clear contexts for considering any medieval artifact relating to blindness---a literary text, a historical document, a theological treatise, or a work of art. For some readers, the book will serve as an introduction to the field of disability studies, an area of increasing interest both within and outside of the academy.
Edward Wheatley is Surtz Professor of Medieval Literature at Loyola University, Chicago.
The lives of youth with disabilities have changed radically in the past fifty years. Youth who are coming of age right now are the first generation to receive educational services throughout childhood and adolescence. Disability policies have opened up opportunities to youth, and they have responded by getting higher levels of education than ever before. Yet many youth are being left behind, compared to their peers without disabilities. Youth with disabilities often still face major obstacles to independence.
In Their Time Has Come, Valerie Leiter argues that there are crucial missing links between federal disability policies and the lives of young people. Youth and their parents struggle to gather information about the resources that disability policies have created, and youth are not typically prepared to use their disability rights effectively. Her argument is based on thorough examination of federal disability policy and interviews with young people with disabilities, their parents, and rehabilitation professionals. Attention is given to the diversity of expectations, the resources available to them, and the impact of federal policy and public and private attitudes on their transition to adulthood.
Since the defeat of the Nazi Third Reich and the end of its horrific eugenics policies, battles over the politics of life, sex, and death have continued and evolved. Dagmar Herzog documents how reproductive rights and disability rights, both latecomers to the postwar human rights canon, came to be seen as competing—with unexpected consequences.
Bringing together the latest findings in Holocaust studies, the history of religion, and the history of sexuality in postwar—and now also postcommunist—Europe, Unlearning Eugenics shows how central the controversies over sexuality, reproduction, and disability have been to broader processes of secularization and religious renewal. Herzog also restores to the historical record a revelatory array of activists: from Catholic and Protestant theologians who defended abortion rights in the 1960s–70s to historians in the 1980s–90s who uncovered the long-suppressed connections between the mass murder of the disabled and the Holocaust of European Jewry; from feminists involved in the militant "cripple movement" of the 1980s to lawyers working for right-wing NGOs in the 2000s; and from a handful of pioneers in the 1940s–60s committed to living in intentional community with individuals with cognitive disability to present-day disability self-advocates.
Amputation need not always signify castration; indeed, in Jack London’s fiction, losing a limb becomes part of a process through which queerly gendered men become properly masculinized. In her astute book, Vulnerable Constitutions, Cynthia Barounis explores the way American writers have fashioned alternative—even resistant—epistemologies of queerness, disability, and masculinity. She seeks to understand the way perverse sexuality, physical damage, and bodily contamination have stimulated—rather than created a crisis for—masculine characters in twentieth- and early twenty-first-century literature.
Barounis introduces the concept of “anti-prophylactic citizenship”—a mode of political belonging characterized by vulnerability, receptivity, and risk—to examine counternarratives of American masculinity. Investigating the work of authors including London, William Faulkner, James Baldwin, and Eli Clare, she presents an evolving narrative of medicalized sexuality and anti-prophylactic masculinity. Her literary readings interweave queer theory, disability studies, and the history of medicine to demonstrate how evolving scientific conversations around deviant genders and sexualities gave rise to a new model of national belonging—ultimately rewriting the story of American masculinity as a story of queer-crip rebellion.
Melvin Juette has said that becoming paralyzed in a gang-related shooting was “both the worst and best thing that happened” to him. The incident, he believes, surely spared the then sixteen year-old African American from prison and/or an early death. It transformed him in other ways, too. He attended college and made wheelchair basketball his passion—ultimately becoming a star athlete and playing on the U.S. National Wheelchair Basketball Team.
In Wheelchair Warrior, Juette reconstructs the defining moments of his life with the assistance of sociologist Ronald Berger. His poignant memoir is bracketed by Berger’s thoughtful introduction and conclusion, which places this narrative of race, class, masculinity and identity into proper sociological context, showing how larger social structural forces defined his experiences. While Juette’s story never gives into despair, it does challenge the idea of the “supercrip.”