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To understand how parents make the decision to implant their deaf young children with cochlear implants, focusing specifically on the concepts of normality, medicalization, and stigma.

I conducted 33 semi-structured interviews with the hearing parents or parent of children with cochlear implants. In all but two families I interviewed the primary caretaker which in all cases was a mother. In the remaining two interviews, I interviewed both parents together. Because of the relative scarcity of families with children with cochlear implants, and the difficulty in connecting with these families, I used a convenience sample, and I did not stratify it in any way. The only requirement for parents to be interviewed is that they had at least one deaf child who had been implanted with at least one cochlear implant. Although this is a small sample, the findings are transferable to other families with the same sociodemographic characteristics as those in my study.

Parents in the study focused on three key concepts: normality, risk analysis, and being a good parent. Dispositional factors such as the need to be “normal” and the desire for material success for one's children appeared to moderate the cost-benefit calculus.

This interview project concentrated on hearing families who had implanted their deaf children with cochlear implants; it does not include culturally Deaf parents who choose to use American Sign Language (ASL) with their Deaf children. Understanding how Deaf families understand the concepts of normality, medicalization, and stigma would shed light on how a distinctly “abnormal” group (by a statistical conception of normal) – ASL-using Deaf people-explain normality in the face of using a non-typical communication method. One can learn a lot by studying the absence of a phenomena, in this case, not implanting children with cochlear implants. It is possible that the existential threat felt by some Deaf people, specifically the demographic problem presented by cochlear implants, led Deaf educators or parents to resist being the subject of research.

Overwhelmingly the sample was female, and white. Only two participants were male, and none of the participants were non-white. The lack of diversity in the sample does not necessarily reflect a lack of diversity of children receiving cochlear implants. Medicaid, which disproportionately covers families of color, covers cochlear implants in most cases, so low SES/racial intersectionality should not have affected the lack of diversity in the sample. However, the oral schools are all private pay, with few scholarships available, so low SES/racial intersectionality in the sampling universe (all children who attend oral schools), may have played a part in the lack of racial diversity within the sample.

Parents in this study were very specific about the fact that they believed cochlear implants would lead to academic, professional, and personal success. They weaved narratives of normality, medicalization, and stigma through their stories. Normality is an important lens from which to see stories about disability and ability, as well as medical correction. As medical science continues to advance, more and more conditions will become medicalized, leading to more and more people taking advanced medical treatments to address problems that were previously considered “problems with living” that are now considered “medical problems” that can be treated with advanced science.

This chapter's contribution to the sociological cochlear implant literature is it's weaving of narratives about normality, stigma, and medicalization into parental stories about the cochlear implant decision-making process. Most literature about the cochlear implant decision-making process focus on cost-benefit analysis, and logical decision-making processes, whereas this paper focuses on decision-making factors stemming from bias, emotions, and values.

The purpose of this paper is to provide a literature review of investigations into the specific disability of deafness in the field of sociology and other closely related fields.

After a pilot search using databases appropriate to social science research, we developed key search terms and, using an inductive approach, we identified major themes in the literature.

Our review shows that deafness has been investigated for a long time in sociology and other related fields, that there is a wide range of themes in scholarly work on the experiences of deaf communities and deaf people, and that conceptualizations of deafness and d/Deaf communities have changed over time. We organize this paper around six major themes we identified, and a few highlighted pieces of scholarship illustrate these themes along the way. We particularly focus on scholarship from the late 1960s through the early 1990s as emblematic of seismic shifts in studying deafness, although we do highlight little known nineteenth century work as well.

This paper captures the legacy of this past scholarship and reveals that deafness is a rich site of inquiry that can contribute to the field of sociology. It is also a valuable resource for any future sociological research into deafness, deaf people, and deaf communities. We conclude with a discussion of our findings, commentary on the extent to which previous scholarship on the sociology of deafness has or has not figured into current scholarship and suggestions for future research.

In this chapter, we examine the unique and heightened negative impacts of the COVID-19 pandemic through tracing how the preexisting social conditions of exclusion and precarity in which many disabled people live, effected access to safe, affordable, and accessible housing in Canada. We then illustrate the reverberating impacts housing choices have on how people with disabilities lived, lived well, and how they faced barriers to living well during the COVID-19 pandemic.

Using an intersectional livelihoods approach, we analyzed semi-structured interviews and focus groups with 32 diverse people with disabilities, 12 key informant semi-structured interviews, as well as academic and community literature and a social media scan of key disability advocacy organizations in Canada.

Pandemic-related policies in Canada often excluded people with disabilities, either overlooking barriers to access and safety, which exacerbated the already precarious livelihoods of people with disabilities or over-emphasized the usefulness of social adaptions such as work from home. These exclusions had more profound consequences for people with disabilities from historically marginalized groups, as they often faced increased barriers to livelihoods pre-pandemic, and disability- or care-specific policies failed to consider intersectional experiences of discrimination. People with disabilities formed communities of care to meet their needs and those of their loved ones.

To achieve a responsive policy response that addresses the cascading impacts of risk and care, it is necessary for governments to engage, early and often, with people with disabilities, disability leaders and organizations in emergency planning and beyond.

In India, people with disabilities (PWDs) have emerged as one of the most vulnerable populations during COVID-19, particularly those living in informal settlements. Although the government has made efforts to ensure healthcare access for all, these efforts seem inadequate considering that PWDs' needs vary greatly depending on type and degree of disability. The purpose of the study is to identify barriers in healthcare access for PWDs in Mumbai's informal settlements during COVID-19.

A qualitative approach employed multiple case study methods. Eight PWDs were selected as cases from the informal settlements of M-East Ward, Mumbai. The data was gathered using observation and interaction with the PWDs. Data were analyzed for emergent themes to explore the presence, meaning, and relationships of barriers faced by PWDs accentuated by pandemic.

Findings indicate a complex and compounded interplay of structural, administrative, psycho-social, and technological factors which created numerous challenges for PWDs to access healthcare provisions during pandemic. These factors include socioeconomic challenges, the built environment inaccessibility, limited transportation facilities, and lack of trained healthcare personnel to support PWDs.

This research adds to an understanding of the barriers faced by PWDs and provides insights for formulating contextualized policies to ensure accessible health services for PWDs when needed. Findings point out ways in which understanding the barriers would help to identify the gaps in the resource system, and to mobilize required resources in the relevant healthcare departments.

This chapter explores the experiences of people with complex conditions before and during the COVID-19 pandemic, their fears for imagined futures when the pandemic first appeared, their reflections on their experiences and present status, as well as plans for a post-pandemic future.

This research is based on semi-structured interviews conducted by phone, Zoom, or in-person with six participants, each interviewed twice – before and during the pandemic – who either have complex medical conditions or are mothers of a child with complex medical conditions, in the United States. Half the interviews were conducted before the pandemic and the other half during the pandemic.

The data illuminate the understanding of our participants of the COVID-19 pandemic as a disability issue, which should be analyzed with the focus of disability as an intersectional social category and that disabled people felt at higher risk due to ableism in health policies and getting their health needs met. The results demonstrated the tremendous impact of the pandemic on the lives of our participants with complex medical conditions, whether in their work, care, physical and mental health, and social relationships.

This study points to the importance of policymakers incorporating strategies to reduce ableism in health care provision, rationing, and other forms of decision-making. Services need to be designed keeping in mind the challenges of disabled people and their need for care. In addition, adequate education, and employment opportunities for disabled people must be ensured, while continuing to expand access options to disabled people that were available throughout the lockdown.

We examine the impact of the COVID-19 pandemic on the functioning of university students with disabilities using assistant support services in Poland. The study aims to (1) reveal the role existing university-based assistant services play in students' lives and (2) examine the impact of the pandemic on assistant services by students with disabilities.

We gathered and analyzed 25 interviews with students with disabilities from across Poland, from public and nonpublic higher education institutions.

The assistant support service at universities introduced in Poland proved to be fragmentary and limited only to the educational process, which resulted in the exclusion of people with complex disabilities and those requiring support in self-care activities. The pandemic has exacerbated previously observed dimensions of segregation and inequalities leading to disproportionate isolation of students with disabilities. It also highlighted the limited understanding of personal assistantship functioning in the academic context and the need for urgent development of universal access to assistance services across Poland. At the same time the forced move to distant, internet-based learning, at least for some students, gave them a sense of self-reliance and independence.

This research adds to the understanding of the consequences of the COVID-19 pandemic for students with disabilities in the case of Poland. It also calls for a reexamination of what personal assistance should mean in the context of higher education and beyond.

This chapter focuses on the experiences of disabled Tamil and Sinhalese women in Sri Lanka.

Using fieldwork observations and in-depth interviews obtained through Community-Based Rehabilitation (CBR) programs over 13 months across four distinct districts in Sri Lanka, we examine complex sociocultural issues at the intersection of gender and disability.

These women’s narratives about their lives show the physical and social barriers related to the accessibility of everyday activities, and also the complex gender norms relating to social expectations to stay hidden from public view, contradictory messages around love and marriage, and reactions to and consequences of being disabled women in public.

The results support calls to prioritize disabled voices in disability research in the Global South, which is currently dominated by a CBR approach in the name of “development.” These data also show the need to systematically address power relations currently at work in policies, practices, and communities that perpetuate disablement; document the need for communities and research to be more inclusive; and obligate scholars and practitioners to be more aware of how the CBR context may aim for development and change, yet often maintain highly gendered economic, political, and social processes of isolation. This project illustrates the ways in which careful attention to personal stories can illuminate complex socio-cultural processes. The chapter also brings voices of women in the Global South into the discourses on narratives and disability, both of which are dominated by perspectives from the industrialized west.

COVID-19 has affected families across the globe with far-reaching consequences, particularly in regard to children's education. The pandemic has exacerbated existing inequalities for families of students with disabilities in particular. This chapter explores families' perspectives on how COVID-19 affected partnerships between families of students with disabilities and their schools in Ontario, Canada.

We interviewed 18 parents of students with disabilities in K-12 Ontario schools. Using a reflexive thematic analysis approach, we analyzed interviews to develop themes inductively.

Participants shared varied experiences of partnerships with their schools both before and during the pandemic. However, all participants described additional challenges as a result of COVID-19. Frequent, open, and personalized communication was emphasized as essential for effective partnerships; however, this was often lacking. Participants shared various ways they were involved in schools, including advocating for their child, and needing to balance multiple roles during COVID-19. Overwhelmingly, participants expressed an inadequacy of support during the pandemic related to online learning and a lack of human resources (e.g., Educational Assistants, therapists), negatively affecting partnerships. However, they also described positive experiences of family-school partnerships, as well as hope for effective future partnerships.

This research gives voice to families of students with disabilities to deepen our understanding of barriers and facilitators to positive family-school partnerships. Findings help to direct appropriate policies and practices that can improve partnerships during COVID-19 and beyond, and ultimately enhance education and quality of life for students with disabilities and their families.