Accessible Summary This project focuses on people with intellectual disabilities and dementia that live in group homes or care facilities in the United States. People in this project shared how their life changed as they got older. They talked about where they live, what they do for work and how they get to spend their day. All the people in this project talked about how it was important for them to see their friends, even if where they lived or worked changed. People in this project worried that they would have to move or stop doing activities that were important to them if they started to need more help. People with intellectual disabilities and dementia should receive support to continue to see friends and do their favourite activities as they get older. Abstract BackgroundFor people with intellectual disabilities and dementia, transitions are likely to become increasingly common as they age. While transitions experienced by people with intellectual disabilities in young adulthood are frequently studied, less is known about transitions in older adults, including residential, vocational and leisure changes. This article aims to explore the experiences of transition from the perspectives of people with intellectual disabilities and dementia, including the impact on their daily lives. MethodologyThree women with intellectual disabilities and dementia living in residential settings participated in participant observations and informal interviews across a variety of environments and activities. Field notes and interview transcripts underwent a thematic analysis focusing on transitions. FindingsParticipants experienced the impact of transitions in their residential placements, day programming, leisure activities and relationships. Themes related to their experiences of transitions included making sense of transitions, utilising peer care networks for support and tackling the looming threat of loss and transition. ConclusionsPeer care networks and friendships are crucial in supporting people during and after transitions. Receiving effective supports to maintain relationships, roles and activities, even in seemingly minor ways, is an important right for people with intellectual disabilities and dementia, particularly as care needs increase.
We are a group of critical theorists who read, thought, wrote, and practiced together while living in New York City during the emergence of Occupy Wall Street, Black Lives Matter, and recently the US presidential election. While our biographies span multiple geographies, we met as researchers, theorists, teachers, and activists across a diverse number of campuses in the city's largest public university, the City University of New York. This special issue emerged as affect studies provoked our imaginations independently in ways that felt crucial for the development of our respective and reflexive political and theoretical projects. We entered the complexities of using affect studies, inspired especially by the generative tension of theory 'versus' practice. Through a collective process of collision and creativity, we experimented with what affect studies could do for our intellectual and political commitments, affecting subjectivity to politicize affect.In this piece, we introduce this special issue, which advocates for affect studies as a mode of critical inquiry of use to radical projects of queerness, blackness, disability, decolonization, and temporalities of the body, a turn that is dependent on our re-engagement with subjectivity. After reviewing the legacy of scholarship on subjectivity to which our work is both continuing and responding, we discuss the debates around the role of the subject in affect studies and the political dimension of affect before thinking through the contributions of the five pieces in this special issue. Collectively, we are affecting subjectivity through an attention to matter, the non-conscious, and identity, and politicizing affect through an attention to form,
Understanding and addressing health inequities calls for enhanced theoretical and empirical attention to multiple forms of stigma and its influence on health behaviors and health outcomes within marginalized communities. While recent scholarship highlights the role of structural stigma on between-group health disparities, the extant literature has yet to elucidate the mechanisms through which structural stigma gives rise to within-group health disparities. In this article, we review and use relevant literature to inform the development of a conceptual model outlining how structural stigma contributes to within-group health disparities by creating division and tension within communities marginalized due to their social statuses and identities. We specifically focus on disparities among (1) communities of color due to White supremacy, (2) gender and sexual minority communities due to patriarchy and heterosexism, and (3) the disability community due to ableism. We argue that the nature and extent of the stigma members of stigmatized communities face are intricately tied to how visible the stigmatized characteristic is to others. By visibility, we refer to characteristics that are more easily perceived by others, and reveal a person’s social identity (e.g., race/ethnicity, nativity, relationship status, gender expression, and disability status). This paper advances the literature by discussing the implications of the model for future research, practice, and policy, including the importance of acknowledging the ways in which structural stigma intentionally disrupts the collective identity and solidarity of communities and consequently threatens health equity.
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