Disability and Community: Volume 6

Within the western tradition of the social sciences, community has been a key concept in understanding social solidarity and social change for over a century. Classic social theorists noted the threats to community with the growth of market economies, urbanization, and migration, even before the advent of mass society and globalization, and certainly in their wake. Social scientists and policy makers have sought to understand and preserve community in the face of poverty, exploitation, and marginalization and to promote its development where it may be lacking.

Purpose – This chapter examines the foundations of community among youth with disabilities.

Methodology – Qualitative data on 52 youth with disabilities were analyzed, based on interviews with the youth and their parents. The sample included youth with intellectual, hidden, physical, and sensory disabilities. Data analysis was guided by grounded theory.

Findings – Four foundations of community were identified: geographic, disability-based, religious, and virtual. Disability-based contexts provided much of the basis of friendship for youth with disabilities. Just under half of youth had community connections within their home towns.

Research limitations – These analyses rely on the self-reported and parent-reported experiences of 52 youth with disabilities in Massachusetts and are not representative of youth with disabilities nationwide. Only youth who were still in high school just before graduation are represented; those who dropped out earlier were not included.

Practical implications – Community connections create opportunities for friendship and for sharing information. Youth enjoyed their connections, whether they were formal (designed and created by adults) or informal (just hanging out with other local youth).

Social implications – Youth's connections with other youth with disabilities may result in bonding social capital, creating friendships, but there are fewer opportunities for bridging social capital, creating connections with typically developing youth.

Originality – This chapter provides an overview of youth's perceptions of their participation in various social and recreational activities and explores and conceptualizes the contexts in which youth with disabilities experience community connections with other youth.

Purpose – This chapter discusses a study in which we examined campus architecture, spatial design, aesthetics, and cultural policy with regard to the manner in which attributes in these visual and textual entities shape the full range of diversity of the student body or the individuals and collective group who study within the university.

Methodology – This chapter presents the qualitative element of a larger multi-method inquiry. The data for this study were generated from a sample composed of eight universities in four states in the United States and of cultural policy documents from multiple universities in addition to the eight specific universities that were visited on-site.

Findings – Twelve themes emerged from data derived from campus visits to eight universities representing diverse geographies and institutional structures and from analysis of the cultural policies of 30 institutions of higher education. Taxonomic analysis (analysis of the organization of themes and their relationships to one another) revealed important directional associations among the themes yielding rich findings for future theory development and testing.

Implications – The findings yielded important understandings about the influence of cultural policy as reflected in the campus community, on inclusion, exclusion, and diversity. Of particular note were the unexpected thematic findings regarding the political, proprietary preferences of “disabled” groups related to space ownership and the future implications of occupying specialized designated architectures. We conclude with conceptual and methodological directions for expanding this research agenda internationally and for informing change in cultural policy and architectures on campus communities.

Purpose – The goal of this chapter was to empirically describe the patterns and dimensions of community interaction of typically underserved families of children with autism and other developmental disabilities within a family quality of life (FQoL) context.

Methodology – We utilized the theoretical framework of FQoL to examine the community interactions of 149 families who voluntarily participated in this study. The Family Quality of Life Survey (FQoLS-2006) was used to collect data from the primary caregivers of the children with the disability, 92% of which were mothers. We conducted an in-depth examination of the six dimensions (importance, opportunities, initiative, attainment, stability, and satisfaction) of community interaction.

Findings – Most families viewed community interaction as very important to their FQoL and the majority (62%) were satisfied with their community interaction, although just over a third reported high attainment, and only 48% reported having adequate opportunities for community interaction. Families of children with autism reported lower attainment of community interaction when compared to families of children with other developmental disabilities (t=2.63, df=147, p=0.01). Some race-related and child-related differences were also observed in the initiative taken to pursue community interaction and discrimination experienced by families.

Limitations – Results must be interpreted with caution, as the participants in this study were all volunteers and the majority were mothers, and therefore may not be representative of all families of children with disabilities. Despite the limitations, findings from this study are a first step in understanding the multidimensional nature of community interaction of low-income, minority families.

Purpose – Researchers use the concept of biosociality and a disability studies framework of empowerment to present and analyze examples of community formation and participation for youth with pediatric multiple sclerosis.

Methodology – The data were collected using participant observation, individual and focus group interviews during Teen Adventure Camps held in the summers of 2004–2009 and an Educational Transition Retreat held in the fall of 2008.

Findings – Evidence of community formation and identification include the development of formal and informal systems for mutual support and mentoring, as well as transformations in self-perception and collective identity. Challenges to community formation include differing perspectives about disability-pride vs. diagnosis-specific affiliations.

Research implications – This research indicates that there are many pathways to individual and community identification which may include and even intertwine both diagnosis-specific and disability-pride approaches. The process of community formation is transformative, thus preferences with regard to community identification should not be considered stable, but rather understood as a developmental process that may change over time.

Originality/value of paper – Building upon social and minority group theories, this research moved beyond social critique to develop and implement strategies for community development, individual, and group empowerment.

Purpose – This chapter argues that assistive technology itself, rather than a shared disabled identity, can be the basis for peer interaction and therefore serve as the basis for community. Specifically, prosthetic technology serves as a point of connection between amputees of different backgrounds.

Methodology – Data are from 20 in-depth qualitative interviews with a diverse group of men and women who lost legs or feet since 2002. The analysis of these interviews is enriched by ethnographic observation of support groups, mobility clinics, and visits to rehabilitation facilities.

Findings – Despite misgivings about support groups and socializing with others simply because of shared impairment, respondents reported connecting with peers through trading technical information and insights into prosthesis use. Thus, the notion of community may be most clearly understood in terms of interaction with shared objects and environments rather than shared identity.

Limitations – As with most qualitative studies, the findings here cannot be generalized to the greater amputee population in the United States.

Practical implications – The findings suggest that groups organized around activities that help people learn prosthetic legs can be the basis for community.

Social implications – This example suggests that communities of users can be a unique source of technical information about assistive technology that professionals cannot necessarily provide.

Value of paper – The analysis brings a unique perspective to the question of community and disability by drawing on sources from science and technology studies to theorize communities of users of assistive technology.

Purpose – The purpose of this work is to explore ways in which parents of children with disabilities actively seek to create a place for themselves and their children within supportive communities of others – despite structural and attitudinal barriers.

Methodology – Semi-structured, interactive interviews were conducted with six mothers and six fathers of older teens and young adults with severe impairments. Interview transcripts were analyzed for themes related to barriers to social participation and strategies used to create and sustain communities of supportive others.

Findings – Results suggest that, while there are indeed many barriers to social participation, these mothers and fathers have successfully utilized a variety of strategies in order to create a sense of community for themselves and their children including: garnering support from family; creating enclaves of “wise” individuals; and active social networking. Findings also suggest that children with disabilities can provide opportunities for parental community involvement in unexpected ways.

Limitations, implications and value – The sample is small and selective and the study used retrospective interviews to examine parental memories. Despite these limitations, the narratives of these parents provide a provocative look at the potential role of personal agency in the community experiences of parents of children with disabilities. The stories told by these parents clearly suggest that it takes concerted effort to construct a village in the face of significant barriers to social participation. Once created, however, that village of supportive others can provide life enhancing support for children with disabilities and their families.

Purpose – Disability-related politics and discourse in developed countries seldom includes the voices of disabled people from immigrant ethnic communities. Attending to the experiences of people with disabilities among immigrant communities is particularly salient when considering questions about community participation and citizenship in the context of immigrant-receiving societies such as the USA. This chapter aims to shed light on this topic by examining the narratives of refugees with disabilities resettled in the USA.

Methodology – A global ethnography framework was used to collect narrative data from eight Cambodian and seven Somali refugees with disabilities through observations, in-depth interviews, focus groups, and social network surveys. Additionally semistructured interviews were conducted with 10 service providers/key experts. Data were analyzed using grounded theory techniques.

Findings – Data from the study revealed that the Cambodian and Somali participants were distinct in terms of their access to sources of support and community and in their experiences of community participation barriers. Depending on their respective circumstances, they engaged in various tactics and strategies to negotiate these barriers and to create new networks of support and advocacy.

Limitations – The study sample was purposively selected and therefore findings represent only the views and experiences of the participants precluding any claims about generalizability. Furthermore, owing to the cross-cultural nature of this research there is a possibility that certain linguistic and cultural nuances were missed during data collection and analysis.

Implications – Findings suggest a need to recognize and support heterogeneous disability experiences and diverse expressions of “disability activism” enacted in individually, contextually, and culturally preferred ways in order to draw disabled people from diverse groups into the broader disability community in the USA.

Purpose – This chapter examines the ways in which community has been discussed and pursued within American disability politics. It shows the various, often contradictory, understandings of community in play and examines the strengths and weaknesses of various strategies used to create community.

Methodology/approach – Using comparative historical techniques of analysis, this chapter compares different conceptualizations of community as they are used by activists and in policies.

Findings – While “community” is often an ideal embedded in activists' aspirations, historically it has meant very different things. The assumptions embedded in the idea of community affect the strategies and policies pursued by activists.

Practical and social implications – Each strategy to pursue community has advantages and disadvantages. Community as place leads to clear policy objectives, but often fails to achieve meaningful relational transformations. Community as social capital focuses on building social relationships, but leaves unaddressed membership in the national community and issues of citizenship. Ideals of community based on insider/outsider distinctions can be effective at unifying a group, but encourages the exclusion of others. Community as social citizenship demands the state uphold a commitment to support all citizens, but is often politically unpalatable. These ideas of community are often used together, sometimes to build upon one another, and other times in ways that are contradictory.

Originality/value of the chapter – Community is a lauded yet elusive goal. This chapter contributes to our understanding of disability politics and the tensions in creating “community.”

Purpose – Medicaid funding for long-term services and supports (LTSS) is a key avenue for community access for people with disabilities and others. Between 1997 and 2009, the boundaries of community access were redrawn and redefined with the introduction of a series of 13 bills to change how Medicaid requires states to fund LTSS. Although they did not successfully pass into law, their presence is felt in the language of the Community First Choice (CFC) Option, part of the Patient Protection and Affordable Care Act (PPACA) of 2010. This chapter documents and analyzes the changes in the concept of community access as reflected across these bills and the CFC.

Methodology – The text of these 13 bills and the CFC were compared with attention to structure, order, and meaning. Documents were hand coded and electronically searched. Codes were entered into atlas.ti for comparison and analysis.

Findings – Four significant changes in the conceptualization of community access emerged: (1) who deserves access to community, (2) what community access entails, (3) why people deserve access to community, and (4) how community access should be organized. With the exception of the reasons why people deserve access to community, the expanded concept of community access illustrated across these bills is reflected in the text of CFC.

Originality/value of the chapter – This chapter contributes to the limited literature that documents and analyzes the historical development of community access across policy documents. In addition, it highlights the relevance of incremental analysis to understanding social change through the legislative process.

Purpose – This chapter focuses on notions of community as related to the discourse around “community living” for people with labels of developmental disabilities, especially as they emerged during and after deinstitutionalization. Following Foucault, this chapter asks whether institutionalization and community living should be conceived of as two separate epochs or as governed by similar logic. The second focus of the chapter is in the ways notions of “community” were evoked by various stakeholders such as parents of children with labels of mental retardation, professionals in the field of developmental disability, and those of formerly institutionalized peoples themselves.

Methodology/approach – This chapter employs the methodological aspects of the work of Michel Foucault and constructs a genealogy of notions of community in relation to deinstitutionalization and the field of developmental disabilities.

Findings – “Community” has been discursively produced in several forms: as a binary opposite of “institution,” as a set of human relationships, and as a paradigm shift in relation to the way developmental disabilities should be conceptualized. It remains unclear whether we have truly moved from an institutional model to a “community-based” model for those with developmental disabilities.

Originality/value of the chapter – Reconceptualizing deinstitutionalization and community living as discursive formations aids in the understanding of the difference between abolition of institutionalization as a mindset and other formulations of the concept of “community” in the field of developmental disabilities.

Purpose – This conceptual chapter explores the effects of neoliberal development practices for people with disabilities in developing countries with special reference to postcolonial India. I examine the governmental strategy that operates through and on communities, analyzing how global political economy tends to localize disability and development responses. Deconstructing the assemblage of neoliberal development practices, this chapter problematizes this development orthodoxy from a disability lens in the context of a disability self-help group (SHG) project in rural south India.

Findings – In promoting government through community, SHG projects not only overlook structural, material, intersectional, and political processes of disablement but also attempt to reconfigure the cultural notions of community and personhood in the interest of market. The case of disability SHGs elucidates how emancipatory pedagogies and frameworks, when depoliticized and co-opted, can have detrimental effects for people with disabilities in the global south. Simultaneously, highlighting the counter politics and disability agency illuminates the modes of disabled people's resistance in the everyday and the institution.

Practical and social implications – Advancing philosophical and practical insights on inclusion, my hope is that this exercise will inform disability scholars, policy makers, educators, and allies of disability rights movements with a critical lens to question and find alternatives to the neoliberal world order.

Originality/value of the chapter – It contributes a Southern epistemological and empirical perspective to disability studies, which is currently dominated by Northern frameworks. It offers a multilayered understanding of rural disability and development in the context of neoliberalism, the knowledge of which is nonexistent.

Liat Ben-Moshe is a postdoctoral fellow in the Department of Disability and Human Development at the University of Illinois at Chicago. Her dissertation, as part of a PhD in Sociology and Disability Studies at Syracuse University, examined abolitionary demands to close down repressive institutions that house those labeled as criminals, mentally disabled, and mentally ill. Liat has written on topics such as the International Symbol of Access, inclusive pedagogy, academic repression, disability, anticapitalism and anarchism, queerness and disability, deinstitutionalization and incarceration, and the politics of abolition.