BiblioVault - Books about People with Disabilities

Familial Fitness

Disability, Adoption, and Family in Modern America

Sandra M. Sufian

University of Chicago Press, 2022

The first social history of disability and difference in American adoption, from the Progressive Era to the end of the twentieth century.

Disability and child welfare, together and apart, are major concerns in American society. Today, about 125,000 children in foster care are eligible and waiting for adoption, and while many children wait more than two years to be adopted, children with disabilities wait even longer. In Familial Fitness, Sandra M. Sufian uncovers how disability operates as a fundamental category in the making of the American family, tracing major shifts in policy, practice, and attitudes about the adoptability of disabled children over the course of the twentieth century.

Chronicling the long, complex history of disability, Familial Fitness explores how notions and practices of adoption have—and haven’t—accommodated disability, and how the language of risk enters into that complicated relationship. We see how the field of adoption moved from widely excluding children with disabilities in the early twentieth century to partially including them at its close. As Sufian traces this historical process, she examines the forces that shaped, and continue to shape, access to the social institution of family and invites readers to rethink the meaning of family itself.

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Families We Need

Disability, Abandonment, and Foster Care’s Resistance in Contemporary China

Erin Raffety

Rutgers University Press, 2023

Set in the remote, mountainous Guangxi Autonomous Region and based on ethnographic fieldwork, Families We Need traces the movement of three Chinese foster children, Dengrong, Pei Pei, and Meili, from the state orphanage into the humble, foster homes of Auntie Li, Auntie Ma, and Auntie Huang. Traversing the geography of Guangxi, from the modern capital Nanning where Pei Pei and Meili reside, to the small farming village several hours away where Dengrong is placed, this ethnography details the hardships of social abandonment for disabled children and disenfranchised, older women in China, while also analyzing the state’s efforts to cope with such marginal populations and incorporate them into China’s modern future. The book argues that Chinese foster families perform necessary, invisible service to the Chinese state and intercountry adoption, yet the bonds they form also resist such forces, exposing the inequalities, privilege, and ableism at the heart of global family making.

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Family Consequences of Children’s Disabilities

Denis P. Hogan

Russell Sage Foundation, 2012

The Americans with Disabilities Act (ADA) and other national policies are designed to ensure the greatest possible inclusion of people with disabilities in all aspects of American life. But as a matter of national policy we still place the lion's share of responsibility for raising children with disabilities on their families. While this strategy largely works, sociologist Dennis Hogan maintains, the reality is that family financial security, the parents' relationship, and the needs of other children in the home all can be stretched to the limit. In Family Consequences of Children's Disabilities Hogan delves inside the experiences of these families and examines the financial and emotional costs of raising a child with a disability. The book examines the challenges families of children with disabilities encounter and how these challenges impact family life. The first comprehensive account of the families of children with disabilities, Family Consequences of Children's Disabilities employs data culled from seven national surveys and interviews with twenty-four mothers of children with disabilities, asking them questions about their family life, social supports, and how other children in the home were faring. Not surprisingly, Hogan finds that couples who are together when their child is born have a higher likelihood of divorcing than other parents do. The potential for financial insecurity contributes to this anxiety, especially as many parents must strike a careful balance between employment and caregiving. Mothers are less likely to have paid employment, and the financial burden on single parents can be devastating. One-third of children with disabilities live in single-parent households, and nearly 30 percent of families raising a child with a disability live in poverty. Because of the high levels of stress these families incur, support networks are crucial. Grandparents are often a source of support. Siblings can also assist with personal care and, consequently, tend to develop more helpful attitudes, be more inclusive of others, and be more tolerant. But these siblings are at risk for their own health problems: they are three times more likely to experience poor health than children in homes where there is no child with a disability. Yet this book also shows that raising a child with a disability includes unexpected rewards—the families tend to be closer, and they engage in more shared activities such as games, television, and meals. Family Consequences of Children's Disabilities offers access to a world many never see or prefer to ignore. The book provides vital information on effective treatment, rehabilitation, and enablement to medical professionals, educators, social workers, and lawmakers. This compelling book demonstrates that every mirror has two faces: raising a child with a disability can be difficult, but it can also offer expanded understanding. A Volume in the American Sociological Association's Rose Series in Sociology

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Family Trouble

Middle-Class Parents, Children's Problems, and the Disruption of Everyday Life

Francis, Ara

Rutgers University Press, 2015

Our children mean the world to us. They are so central to our hopes and dreams that we will do almost anything to keep them healthy, happy, and safe. What happens, then, when a child has serious problems? In Family Trouble, a compelling portrait of upheaval in family life, sociologist Ara Francis tells the stories of middle-class men and women whose children face significant medical, psychological, and social challenges.

Francis interviewed the mothers and fathers of children with such problems as depression, bi-polar disorder, autism, learning disabilities, drug addiction, alcoholism, fetal alcohol syndrome, and cerebral palsy. Children’s problems, she finds, profoundly upset the foundations of parents’ everyday lives, overturning taken-for-granted expectations, daily routines, and personal relationships. Indeed, these problems initiated a chain of disruption that moved through parents’ lives in domino-like fashion, culminating in a crisis characterized by uncertainty, loneliness, guilt, grief, and anxiety. Francis looks at how mothers and fathers often differ in their interpretation of a child’s condition, discusses the gendered nature of child rearing, and describes how parents struggle to find effective treatments and to successfully navigate medical and educational bureaucracies. But above all, Family Trouble examines how children’s problems disrupt middle-class dreams of the “normal” family. It captures how children’s problems “radiate” and spill over into other areas of parents’ lives, wreaking havoc even on their identities, leading them to reevaluate deeply held assumptions about their own sense of self and what it means to achieve the good life.

Engagingly written, Family Trouble offers insight to professionals and solace to parents. The book offers a clear message to anyone in the throes of family trouble: you are in good company, and you are not as different as you might feel...

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Fictions of Affliction

Physical Disability in Victorian Culture

Martha Stoddard Holmes

University of Michigan Press, 2010

"Highly recommended . . . Holmes moves seamlessly from novelists like Charles Dickens to sociologists like Henry Mayhew to autobiographers like John Kitto."
---Choice

"An absolutely stunning book that will make a significant contribution to both Victorian literary studies and disability studies."
---Rosemarie Garland-Thomson, Emory University

"Establishes that Victorian melodrama informs many of our contemporary notions of disability . . . We have inherited from the Victorians not pandemic disability, but rather the complex of sympathy and fear."
---Victorian Studies

Tiny Tim, Clym Yeobright, Long John Silver---what underlies nineteenth-century British literature's fixation with disability? Melodramatic representations of disability pervaded not only novels, but also doctors' treatises on blindness, educators' arguments for "special" education, and even the writing of disabled people themselves. Drawing on extensive primary research, Martha Stoddard Holmes introduces readers to popular literary and dramatic works that explored culturally risky questions like "can disabled men work?" and "should disabled women have babies?" and makes connections between literary plots and medical, social, and educational debates of the day.

Martha Stoddard Holmes is Associate Professor of Literature and Writing Studies at California State University, San Marcos.

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Food Allergy Advocacy

Parenting and the Politics of Care

Danya Glabau

University of Minnesota Press, 2022

A detailed exploration of parents’ fight for a safe environment for their kids, interrogating how race, class, and gender shape health advocacy

The success of food allergy activism in highlighting the dangers of foodborne allergens shows how illness communities can effectively advocate for the needs of their members. In Food Allergy Advocacy, Danya Glabau follows parents and activists as they fight for allergen-free environments, accurate labeling, the fair application of disability law, and access to life-saving medications for food-allergic children in the United States. At the same time, she shows how this activism also reproduces the culturally dominant politics of personhood and responsibility, based on an idealized version of the American family, centered around white, middle-class, and heteronormative motherhood.

By holding up the threat of food allergens to the white nuclear family to galvanize political and scientific action, Glabau shows, the movement excludes many, including Black women and disabled adults, whose families and health have too often been marginalized from public health and social safety net programs. Further, its strategies are founded on the assumption that market-based solutions will address issues of social exclusion and equal access to healthcare.

Sharing the personal experiences of a wide spectrum of people, including parents, support group leaders, physicians, entrepreneurs, and scientists, Food Allergy Advocacy raises important questions about who controls illness activism. Using critical, intersectional feminism to interrogate how race, class, and gender shape activist priorities and platforms, it shows the way to new, justice-focused models of advocacy.

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For a Pragmatics of the Useless

Erin Manning

Duke University Press, 2020

What 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.

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The Forgotten Ones

A Sociological Study of Anglo and Chicano Retardates

By Anne-Marie Henshel

University of Texas Press, 1972

In The Forgotten Ones, originally published in 1972, Anne-Marie Henshel examines the lives of a group of persons living within the community who had been diagnosed at one time or another as mentally retarded. The analysis makes use of three sets of comparisons—Anglo and Chicano, married and single, male and female—and the subjects in each category are analyzed in terms of personal characteristics, employment situation, material possessions, living conditions, family background, social activities, and contacts with “officials”—including the police. In addition, Henshel gives a detailed presentation of the conjugal lives of the married subjects: mutual feelings, marital satisfaction, reproduction, parenthood.

All data were gathered through three in-depth interviews with each subject, at intervals of about three months. In the case of a married respondent, the spouse was interviewed simultaneously, whenever possible, but separately. Interviewer was matched with subject by sex and ethnicity. Although the respondent’s reports were complemented by the interviewer’s perception, emphasis was placed on the individual’s perception of his or her own situation, and the data were analyzed accordingly.

The predominant themes are cultural differences between the two ethnic groups, especially in marriage, the relative superiority of the married over the single, the advantages and disadvantages of the male and the female in view of sex-role norms, and some of the problems with which the respondents are besieged—on the whole, problems very similar to those of other poor people. All-pervasive are social isolation, loneliness, lack of money, deficient education, poor physical appearance, failure in birth-control efforts, the presence of handicapped children, and the need for humane guidance and training.

Suggestions for improving relations with individuals once labeled retardates are presented in the last chapter.

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Form, Meaning, and Focus in American Sign Language

Miako N. P. Rankin

Gallaudet University Press, 2013

The meaning of any linguistic expression resides not only in the words, but also in the ways that those words are conveyed. In her new study, Miako N. P. Rankin highlights the crucial interrelatedness of form and meaning at all levels in order to consider specific types of American Sign Language (ASL) expression. In particular, Form, Meaning, and Focus in American Sign Language considers how ASL expresses non-agent focus, similar to the meaning of passive voice in English.

Rankin’s analyses of the form-meaning correspondences of ASL expressions of non-agent focus reveals an underlying pattern that can be traced across sentence and verb types. This pattern produces meanings with various levels of focus on the agent. Rankin has determined in her meticulous study that the pattern of form-meaning characteristic of non-agent focus in ASL is used prolifically in day-to-day language. The recognition of the frequency of this pattern holds implications regarding the acquisition of ASL, the development of curricula for teaching ASL, and the analysis of ASL discourse in effective interpretation.

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Foucault and Feminist Philosophy of Disability

Shelley L. Tremain

University of Michigan Press, 2017

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.

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Freak Performances

Dissidence in Latin American Theater

Analola Santana

University of Michigan Press, 2018

The figure of the freak as perceived by the Western gaze has always been a part of the Latin American imaginary, from the letters that Columbus wrote about his encounters with dog-faced people to Shakespeare's Caliban. The freak acquires greater significance in a globalized, neoliberal world that defines the "abnormal" as one who does not conform mentally, physically, or emotionally and is unable or unwilling to follow the economic and cultural norms of the institutions in power. Freak Performances examines the continuing effects of colonialism on modern Latin American identities, with a particular focus on the way it has constructed the body of the other through performance. Theater questions the representations of these bodies, as it enables the empowerment of the silenced other; the freak as a spectacle of otherness finds in performance an opportunity for re-appropriation by artists resisting the dominant authority. Through an analysis of experimental theater, dance theater, performance art, and gallery-based installation art across eight countries, Analola Santana explores the theoretical issues shaped by the encounters and negotiations between different bodies in the current Latin American landscape.

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From Good Will To Civil Rights

Transforming Federal Disability Policy

Richard K. Scotch

Temple University Press, 2001

Now that curb cuts, braille elevator buttons, and closed caption television are commonplace, many people assume that disabled people are now full participants in American society. This book tells a rather different story. It tells how America's disabled mobilized to effect sweeping changes in public policy, not once but twice, and it suggests that the struggle is not yet over.

The first edition of From Good Will to Civil Rights traced the changes in federal disability policy, focusing on the development and implementation of Section 504 of the Rehabilitation Act of 1973. Richard K. Scotch's extensive interviews with policymakers, leaders of the disability rights movement, and other advocates, supplemented the sketchy official history of the legislation with the detailed, behind-the-scenes story, illuminating the role of the disability rights movement in shaping Section 504. Charting the shifts in policy and activist agendas through the 1990's, this new edition surveys the effects and disappointments associated with the Americans with Disabilities Act, passed in 1990, in the context of the continuing movement to secure civil rights for disabled people.

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From Pity to Pride

Growing Up Deaf in the Old South

Hannah Joyner

Gallaudet University Press, 2004

The antebellum South’s economic dependence on slavery engendered a rigid social order in which a small number of privileged white men dominated African Americans, poor whites, women, and many people with disabilities. From Pity to Pride examines the experiences of a group of wealthy young men raised in the old South who also would have ruled over this closely regimented world had they not been deaf. Instead, the promise of status was gone, replaced by pity, as described by one deaf scion, “I sometimes fancy some people to treat me as they would a child to whom they were kind.”

In this unique and fascinating history, Hannah Joyner depicts in striking detail the circumstances of these so-called victims of a terrible “misfortune.” Joyner makes clear that Deaf people in the North also endured prejudice. She also explains how the cultural rhetoric of paternalism and dependency in the South codified a stringent system of oppression and hierarchy that left little room for self-determination for Deaf southerners. From Pity to Pride reveals how some of these elite Deaf people rejected their family’s and society’s belief that being deaf was a permanent liability. Rather, they viewed themselves as competent and complete. As they came to adulthood, they joined together with other Deaf Americans, both southern and northern, to form communities of understanding, self-worth, and independence.

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