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Issues related to disability and childhood are frequently examined across the social sciences and humanities. Many researchers conduct studies with disabled children as the focus of study, as research participants and/or as research drivers. Disabled children represent two categories of identified vulnerability, thus, requiring stringent ethical boundaries in terms of recruitment, consent, research methods, analysis, disclosure and knowledge mobilisation. Although many safeguards apply to research with all children, the focus on disability and disabled childhoods initiates further ethical scrutiny. In this chapter, the authors examine a number of ethical dilemmas that have emerged when conducting research with, and in relation to, disabled children. In particular, the authors will examine the roles of disabled children and youth in advancing research on policy and practice within education and care sectors. The authors query the possibilities and limitations that emerge when employing institutional ethnographic, participatory action and phenomenological research. The chapter unpacks some of the tricky tensions around asking children to speak about disability and share their experiences of disablement when disability is so frequently stigmatised. The authors examine the impacts of predetermined categories of impairment within quantitative research. Across methodologies, data collection based on assumptions of impairment can skew analyses towards a medicalised framework of disability, leaving little room for socio-cultural perspectives on disablement, including how these approaches trigger ethical issues around notions of representation and agency in research with disabled children.

Twelve percent of families in the United States have a child with a disability, yet little is known about the long-term consequences of growing up with a disabled sibling. This study builds on previous research regarding disability effects on families and offers an additional view on the linked lives of families and, in particular, siblings. Using secondary data from the National Longitudinal Survey of Youth 1979 Children and Young Adults, this study examines the odds of college completion among young adults with a disabled sibling during childhood. Specifically, I examine the gender differences among those who had a sibling with a disability. Women are more than 35% less likely to complete college if they had a disabled sibling during childhood; there is no significant difference by sibling disability status for boys. To understand whether children in low-resourced families are particularly penalized by having a disabled sibling, I examine whether various family resources attenuate the low graduation odds among those who had a disabled sibling. I find that having stably married parents during childhood largely eliminates the college completion gap between those with and without a disabled sibling. However, increases in mothers' education or family income do not attenuate the college completion gap. By identifying this gender disadvantage in college completion, this study shows that disabilities have consequences not just for disabled individuals but for their siblings as well, shining a light on a hidden cost of disability on families.

In this chapter, we examine how the media in India constructed the lives, needs, and desires of disabled children in India during the tumultuous pandemic.

Through critical discourse analysis, we address how children's bodies and needs have been explicitly discursively constructed as “excessive,” while implicitly drawing upon neoliberal, ableist logics of loss and productivity.

We foreground how the framing of COVID-19 as a disaster in the Indian context obscures state neglect, suggesting that inequality has been the result of the pandemic rather than the limits of state care under neoliberal ableism. Despite the recognition of gaps in the care received by disabled children, neoliberal, entrepreneurial solutions have emerged as a new, widely touted form of care during the pandemic.

Through our analysis, we highlight how disabled children have been neglected by the state and constructed as burdensome and vulnerable. We argue that this occurs when disabled children's bodyminds do not conform to an ideal of the self-reliant, independent citizen under the logics of neoliberal ableism. Our work demonstrates how children with disabilities are discursively rendered absent from conceptualizations of normate citizenship, unless seen as contributing to current or future aspirations for state productivity and growth.

In this chapter, we examine how the schooling experiences of disabled children have changed during COVID-19, how families' engagement, advocacy and support of their children have shifted during the pandemic, and how race, class, and other axes of inequality shape these processes.

We used a semi-structured interview protocol with families of disabled children, asking them about their experiences with their children's schools before and during the pandemic. We analyzed the interview data using “flexible coding” and the constant comparative method.

COVID-19 has had wide-reaching effects on disabled children's schooling experiences, yet these effects varied, particularly at the intersections of disability with race, class, linguistic status, and gender. Remote learning and other pandemic-related changes to schools exacerbated extant inequalities in children's educational experiences, as well as in families' ability to effectively advocate for their children in school.

This research provides important information about how the pandemic has exacerbated inequality at the intersection of disability, race, and other axes of inequality. Moreover, it provides a lens to examine ableism and other systems of oppression in schools. The findings have crucial policy implications, pointing to the necessity of equitably allocated, high quality, inclusive educational services for disabled students, as well as to the need for special education policy that does not rely on individual family advocacy to allocate appropriate services.

International rates of child maltreatment, particularly for children with disabilities are difficult to determine due to a lack of centralized data bases, a tendency to not keep consistent records of disability characteristics in cases of suspected maltreatment, and in extreme cases, because maltreatment is not acknowledged or addressed publicly (Bonner et al., 1997; Morris, 1999). Therefore, most of the data on prevalence rates of maltreatment in disabled children are from western cultures such as the U.S., Canada, and the U.K. There is some evidence to suggest that the rates internationally are probably at least equal to those in the U.S. samples (Cooke & Standen, 2002; Gringorenko, 1998). Finklehor (1994) found that the rates of sexual abuse were consistent across nations for both males and females. The nations in that study included most European countries, Canada, Dominican Republic, Australia, New Zealand, and South Africa. On the other hand, Forrester and Harwin (2000) note that measuring child maltreatment internationally is nearly impossible due to the varying cultural norms, national resources, and the tendency for many forms of maltreatment to go unnoticed. They suggest that an alternative to measuring maltreatment internationally may be to evaluate each nation’s willingness to both address issues regarding the rights of children and to provide services to children who are maltreated.

We compare the deinstitutionalization of psychiatric patients and the developmentally disabled in the United States and demonstrate that there were two path-dependent processes with significant qualitative and quantitative differences, ultimately leading to better outcomes for developmentally disabled individuals.

Using secondary literature, we construct a sustained comparison of the two processes in terms of outcomes, timing, tempo, extent, funding, demographic composition, and investment in community services. We then reconstruct the strategies of de-stigmatization and framings of moral worth deployed in the two cases, analyzing their effects on deinstitutionalization in terms of conceptions of risk, rights, and care.

Deinstitutionalization began later for developmentally disabled individuals than for psychiatric patients, and was a more gradual, protracted process. It was not driven by fiscal conservatism, discharges, and the trans-institutionalization of the senile aged, as was deinstitutionalization for psychiatric patients, but primarily by the prevention of institutionalization of young children, and increased investment in infrastructure. Consequently, the deinstitutionalization of the developmentally disabled was far more thorough and successful. The process was shaped by the framing of the developmentally disabled as “forever children” by parents’ organizations that demanded a balance between autonomy, protection, and the provision of care. In contrast, the deinstitutionalization of psychiatric patients was shaped by their framing as autonomous citizens temporarily suffering from “mental health problems” that could be prevented, treated, and cured. This frame foregrounded the right to choose (and also refuse) treatment, while undervaluing the provision of care.

The aim of this chapter is to explore the marginal dimensions of disability, gender and caste in the context of Indian economy in recent globalizing times.

Using an intersectional approach it is argued that caste, gender and disability implicate and impact the opportunities available to persons as these account for the marginalities in a developing economy. The chapter is based on ethnographic and empirical data and it critically analyses the trends.

This study shows how social and cultural frames on one hand and the nature of diverse occupational pursuits on the other set the context within which a person with dalit ¹ status, with impairments and also a woman is likely to suffer the most. Social contexts are diverse and situation of persons within different groups varies. The chapter also examines state and NGO initiatives in this regard and suggests the limitations and possibilities of dalits with disabilities having access to resources within neo-liberal economy.

The findings expand the scope of disability research having policy implications.

The purpose of this paper is to examine early sociological research on the experience of non-impaired siblings in families of children with disabilities for evidence of an approach consistent with aspects of the social model of disability.

Due to the historical nature of this special issue, this work examines research published over a 30-year period beginning with the 1960s and ending with the late 1980s. After an extensive literature search, a mixture of 51 quantitative and qualitative studies on the sibling experience was included in the sample.

Findings indicate that while the focus of much of the early research on the non-impaired sibling experience was on the negative impact of having a sibling with impairments, there were some exceptions in early sociological studies that highlighted the impact of structural barriers and cultural attitudes on sibling adjustment. In particular, results of early studies showed that the transmission of inclusionary attitudes within the family unit can improve the lives of siblings.

The research for this study engages and assesses the relationship of the media from the 20th to the 21st century, combining scholar activism and public leadership in the disability rights movement. Having chronicled the disability rights movement from its roots, this chapter presents the discourse of media and movement, sampling mainstream media along with the advocacy and alternative media in support of disability rights. A range of media forms are engaged from advocacy bulletins to mainstream news media to public broadcasts that represent the diversity and complexity of the movement as it continues into the 21st century, pressing for the universalism of human rights for all.

This paper presents an updated summary of a meta-analysis of qualitative research on parenting children with disabilities published over the last 50 years. In this summary, we explore whether shifts in academic discourse and changes in professional training are reflected in research on parenting and/or the experiences of parents who are the subject of such research. The detailed findings of the original analysis were published in Volume 7 of Research in Social Science and Disability.

An extensive literature search was conducted, and 79 peer-reviewed qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities. The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.