front cover of The Case About Amy
The Case About Amy
R. C. Smith, foreword by Frank G. Bowe
Temple University Press, 1996

The Rowley family's struggle began when Amy entered kindergarten and culminated five years later in a pivotal decision by the U.S. Supreme Court. In effect, the Court majority concluded that the Individuals with Disabilities Education Act did not mandate equal opportunity for children with disabilities in classes with typical children; a disappointing decision for disability advocates.

The Supreme Court decided that schools were required only to provide enough help for children with disabilities to pass from grade to grade. The Court reversed the lower courts' rulings, which had granted Amy an interpreter, setting a precedent that could affect the quality of education for all individuals with disabilities.

From the time Amy entered kindergarten in Peekskill, New York, her parents battled with school officials to get a sign language interpreter in the classroom. Nancy and Clifford Rowley, also deaf, struggled with officials for their own right to a communications process in which they could fully participate. Stuck in limbo was a bright, inquisitive child, forced to rely on partial lipreading of rapid classroom instruction and interaction, and sound amplifiers that were often broken and always cumbersome.

R.C. Smith chronicles the Rowley family's dealings with school boards, lawyers, teachers, expert consultants, advocates, and supporters, and their staunch determination to get through the exhaustive process of presenting the case time after time to school adjudicative bodies and finally the federal courts. The author also documents his own "coming to awareness" about how the "able" see the "disabled."



In the series Health, Society, and Policy, edited by Sheryl Ruzek and Irving Kenneth Zola.

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The Conditions of Discretion
Joel Handler
Russell Sage Foundation, 1986
This timely book is concerned with interactions between ordinary people and large public bureaucracies—interactions that typically are characterized by mutual frustration and antagonism. In fact, as Joel Handler points out, the procedural guidelines intended to ensure fairness and due process fail to take account of an initial imbalance of power and tend to create adversarial rather than cooperative relationships. When the special education needs of a handicapped child must be determined, parents and school administrators often face an especially painful confrontation. The Conditions of Discretion focuses on one successful approach to educational decision making (developed by the school district of Madison, Wisconsin) in order to illustrate how such interactions can be restructured and enhanced. Madison's creative plan regards parents as part of the solution, not the problem, and uses "lay advocates" to turn conflict into an opportunity for communication. Arrangements such as these, in Handler's analysis, exemplify the theoretical conditions under which discretionary decisions can be made fairly and with the informed participation of all concerned. The Conditions of Discretion offers not only a detailed case study, sympathetically described, but also persuasive assessments of major themes in contemporary legal and social policy—informed consent, bureaucratic change, social movement activity, the relationship of the individual to the state. From these strands, Handler weaves a significant new theory of cooperative decision making that integrates the public and the private, recognizes the importance of values, and preserves autonomy within community.   "A masterful blend of social criticism, social sciences, and humane, constructive thought about the future of the welfare state." —Duncan Kennedy, Harvard Law School
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Cripping Girlhood
Anastasia Todd
University of Michigan Press, 2024
Cripping Girlhood offers a new theorization of disabled girlhood, tracing how and why representations of disabled girls emerge with frequency in twenty-first century U.S. media culture. It uncovers how the exceptional figure of the disabled girl most often appears as a resource to work through post-Americans with Disabilities Act (ADA) anxieties about the family, healthcare, labor, citizenship, and the precarity of the bodymind. In paying critical attention to disabled girlhood, the book uses feminist disability studies to rupture the unwitting assumption in girls’ studies that girlhood is necessarily non-disabled. 

By closely examining the ways that disabled girls represent themselves, Anastasia Todd goes beyond a critique of the figure of the privileged, disabled girl subject in the national imagination to explore how disabled girls circulate their own capacious re-envisioning of what it means to be a disabled girl. In analyzing a range of cultural sites, including YouTube, TikTok, documentaries, and GoFundMe campaigns, Todd shows how disabled girls actively upend what we think we know about them and their experience, recasting the meanings ascribed to their bodyminds in their own terms.  By analyzing disabled girls’ self-representational practices and cultural productions, Todd shows how disabled girls deftly theorize their experiences of ableism, sexism, racism, and ageism, and cultivate communities online, creating archives of disability knowledge and politicizing other disabled people in the process. 
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Developmental Programming for Infants and Young Children
Volume 1. Assessment and Application
D. Sue Schafer and Martha S. Moersch, Editors
University of Michigan Press, 1981

Developmental Programming for Infants and Young Children: Volume 1 provides detailed instructions for the use of Volume 2: Early Intervention Developmental Profile, including administration and evaluation techniques, scoring and interpretation of results, validity and reliability of findings, and complete item descriptions. To be used with children functioning in the 0-to-36-month developmental age range. Volume 1 includes the scoring sheet (Volume 2).

Developmental Programming for Infants and Young Children

In Five Volumes

Developmental Programming for Infants and Young Children has proven to be an invaluable tool for teachers, therapists, and other professionals who assess and facilitate the development of children functioning primarily in the 0-to-60 month range. The authors address six areas of development: perceptual/fine motor, cognition, language, social/emotional, self-care, and gross motor. Volumes 1, 2, and 3 are designed for use with children functioning in the 0-to-36-month developmental age range, while Volumes 4 and 5 extend assessment and programming guidelines to 5-year (preschool) levels.

Carefully designed and tested by the University of Michigan's Institute for the Study of Mental Retardation and Related Disabilities, all volumes bridge the gap between assessment and program implementation.

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Disability Worlds
Faye Ginsburg and Rayna Rapp
Duke University Press, 2024
In Disability Worlds, Faye Ginsburg and Rayna Rapp chronicle and theorize two decades of immersion in New York City’s wide-ranging disability worlds as parents, activists, anthropologists, and disability studies scholars. They situate their disabled children’s lives among the experiences of advocates, families, experts, activists, and artists in larger struggles for recognition and rights. Disability consciousness, they show, emerges in everyday politics, practices, and frictions. Chapters consider dilemmas of genetic testing and neuroscientific research, reimagining kinship and community, the challenges of “special education,” and the perils of transitioning from high school. They also highlight the vitality of neurodiversity activism, disability arts, politics, and public culture. Disability Worlds reflects the authors’ anthropological commitments to recognizing the significance of this fundamental form of human difference. Ginsburg and Rapp’s conversations with diverse New Yorkers reveal the bureaucratic constraints and paradoxes established in response to the disability rights movement, as well as the remarkable creativity of disabled people and their allies who are opening pathways into both disability justice and disability futures.
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The Disabled Child
Memoirs of a Normal Future
Amanda Apgar
University of Michigan Press, 2023
When children are born with disabilities or become disabled in childhood, parents often experience bewilderment: they find themselves unexpectedly in another world, without a roadmap, without community, and without narratives to make sense of their experiences. The Disabled Child: Memoirs of a Normal Future tracks the narratives that have emerged from the community of parent-memoirists who, since the 1980s, have written in resistance of their children’s exclusion from culture. Though the disabilities represented in the genre are diverse, the memoirs share a number of remarkable similarities; they are generally written by white, heterosexual, middle or upper-middle class, ablebodied parents, and they depict narratives in which the disabled child overcomes barriers to a normal childhood and adulthood. Apgar demonstrates that in the process of telling these stories, which recuperate their children as productive members of society, parental memoirists write their children into dominant cultural narratives about gender, race, and class.   By reinforcing and buying into these norms, Apgar argues, “special needs” parental memoirs reinforce ableism at the same time that they’re writing against it.
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Distinguishing Disability
Parents, Privilege, and Special Education
Colin Ong-Dean
University of Chicago Press, 2009

Students in special education programs can have widely divergent experiences. For some, special education amounts to a dumping ground where schools unload their problem students, while for others, it provides access to services and accommodations that drastically improve chances of succeeding in school and beyond. Distinguishing Disability argues that this inequity in treatment is directly linked to the disparity in resources possessed by the students’ parents.

Since the mid-1970s, federal law has empowered parents of public school children to intervene in virtually every aspect of the decision making involved in special education. However, Colin Ong-Dean reveals that this power is generally available only to those parents with the money, educational background, and confidence needed to make effective claims about their children’s disabilities and related needs. Ong-Dean documents this class divide by examining a wealth of evidence, including historic rates of learning disability diagnosis, court decisions, and advice literature for parents of disabled children. In an era of expanding special education enrollment, Distinguishing Disability is a timely analysis of the way this expansion has created new kinds of inequality.

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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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front cover of Family Consequences of Children’s Disabilities
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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Home Signs
An Ethnography of Life beyond and beside Language
Joshua O. Reno
University of Chicago Press, 2024
An intimate account of an anthropologist’s relationship with his non-verbal son and how it has shaped and transformed his understanding of closeness and communication.

Home Signs grew out of the anthropologist Joshua Reno’s experience of caring for and trying to communicate with his teenage son, Charlie, who cannot speak. To manage interactions with others, Charlie uses what are known as “home signs,” gestures developed to meet his need for expression, ranging from the wiggle of a finger to a subtle sideways glance. Though he is nonverbal, he is far from silent: in fact, he is in constant communication with others.
 
In this intimate reflection on language, disability, and togetherness, the author invites us into his and Charlie’s shared world. Combining portraits of family life and interviews with other caregivers, Reno upends several assumptions, especially the idea that people who seem not to be able to speak for themselves need others to speak on their behalf. With its broad exploration of nonverbal communication in both human and nonhuman contexts, Home Signs challenges us to think harder about what it means to lead a “normal” life and to connect with another person.
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front cover of Individual Differences in Online Computer-based Learning
Individual Differences in Online Computer-based Learning
Gifted and Other Diverse Populations
Patrick Suppes
CSLI, 2013
In 1894 John Dewey established his experimental laboratory school at the University of Chicago, with a focus on teaching each student according to their individual differences. This concept indicated a shift away from the emphasis on communal, classroom teaching, which marked educational practices in the nineteenth century during the advent of widely available public education.
            With the introduction of computer-based online instruction in schools, curricula are able to be fully informed by individual difference, subtly and quickly tracking students’ progress. In these courses, teachers play the role of troubleshooters instead of lecturers. Individual Differences examines a large number of studies on computer-based and online instruction, with special attention paid to gifted students in the fields of mathematics, science, technology, and engineering. Other chapters also focus on a wide variety of student populations: deaf students, American Indian rural students, and underachieving, impoverished students.  
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front cover of La Normalizacion del Deficiente
La Normalizacion del Deficiente
Actitudes del Profesorado (Teachers' Attitudes toward Mainstreaming Handicapped Children in Spain)
Francisco Alberto Chueca y Mora
University of Michigan Press, 1988
Teacher attitudes toward the mainstreaming of students with handicaps is a topic of international concern. Although as a social and educational policy, mainstreaming has been attempted with greatly varying degrees of success in the United States and elsewhere for the past ten years, very little empirical evidence existed to give support to such a policy. The author's study, conducted in Spain prior to a nationwide effort to integrate children with handicaps into regular classrooms, indicates that the success or failure of such programs is crucially linked to teachers' willingness to accept the concept of mainstreaming. This study examines teacher attitudes and related variables about mainstreaming before its inception, and resolves some of the difficulties that have been experienced with its implementation. This is an extremely important document for educators and others involved with handicapped children.
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Loving Rachel
A Family's Journey from Grief
Jane Bernstein
University of Illinois Press, 2007

In 1983, Jane Bernstein had everything she ever wanted: a healthy four-year-old daughter, Charlotte; a happy marriage; a highly praised first novel; and a brand new baby, Rachel. But by the time Rachel was six weeks old,

a neuro-ophthalmologist told Jane and her husband that their baby was blind. Although there was some hope that Rachel might gain partial vision as she grew, her condition was one that often resulted in seizure disorders and intellectual impairment. So began a series of medical and emotional setbacks that were to plague Rachel and her parents and strain their marriage to the breaking point. Spanning the first four years of Rachel’s life, Loving Rachel is a heartbreaking chronicle of a marriage and a compelling story of parental love told with searing honesty and surprising humor.

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Poor Relations
The Children of the State in Illinois, 1818-1990
Joan Gittens
University of Illinois Press, 1994
 
       This comprehensive history traces the care of dependent, delinquent,
        and disabled children in Illinois from the early nineteenth century to
        current times, focusing on the dilemmas raised by both public intervention
        and the lack of it. Joan Gittens explores the inadequacies of a system
        that has allowed problems in the public care of children to recur regularly
        but at the same time insists that the state's own history makes it clear
        that the potential for improvements exists.
 
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Schooling Without Labels
Parents, Educators, and Inclusive Education
Douglas Biklen
Temple University Press, 1992

Douglas Biklen closely examines the experiences of six families in which children with disabilities are full participants in family life in order to understand how people who have been labeled disabled might become full participants in the other areas of society as well. He focuses on the contradictions between what some families have achieved, what they want for their children, and what society and its social policies allow. He demonstrates how the principles of inclusion that govern the lives of these families can be extended to education, community life, and other social institutions.

The parents who tell their stories here have actively sought inclusion of their children in regular schools and community settings; several have children with severe or multiple disabilities. In discussing issues such as normalization, acceptance, complete schooling, circles of friends, and community integration, these parents describe the challenge and necessity of their children's "leading regular lives."



In the series Health, Society, and Policy, edited by Sheryl Ruzek and Irving Kenneth Zola.
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front cover of Translating Human Rights in Education
Translating Human Rights in Education
The Influence of Article 24 UN CRPD in Nigeria and Germany
Julia Biermann
University of Michigan Press, 2022

The 2006 United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) is the first human rights treaty to explicitly acknowledge the right to education for persons with disabilities. In order to realize this right, the convention’s Article 24 mandates state parties to ensure inclusive education systems that overcome outright exclusion as well as segregation in special education settings. Despite this major global policy change to tackle the discriminations persons with disabilities face in education, this has yet to take effect in most school systems worldwide.

Focusing on the factors undermining the realization of disability rights in education, Julia Biermann probes current meanings of inclusive education in two contrasting yet equally challenged state parties to the UN CRPD: Nigeria, whose school system overtly excludes disabled children, and Germany, where this group primarily learns in special schools. In both countries, policy actors aim to realize the right to inclusive education by segregating students with disabilities into special education settings. In Nigeria, this demand arises from the glaring lack of such a system. In Germany, conversely, from its extraordinary long-term institutionalization. This act of diverting from the principles embodied in Article 24 is based on the steadfast and shared belief that school systems, which place students into special education, have an innate advantage in realizing the right to education for persons with disabilities. Accordingly, inclusion emerges to be an evolutionary and linear process of educational expansion that depends on institutionalized special education, not a right of persons with disabilities to be realized in local schools on an equal basis with others. This book proposes a refined human rights model of disability in education that shifts the analytical focus toward the global politics of formal mass schooling as a space where discrimination is sustained.

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