Coping with social stigma: people with intellectual disabilities moving from institutions and family home.
Ask clients with intellectual disabilities directly about stigma and identity when planning residential transitions.
01Research in Context
What this study did
Burack et al. (2004) talked with 28 adults who have intellectual disabilities. All were moving from large institutions or family homes into community houses.
The team used open interviews. They asked how people felt about the move and about being labeled.
What they found
Every person knew stigma exists. Some felt shame, others felt proud. Each used different ways to cope.
People saw themselves in varied lights: helper, friend, worker, or victim. These views shaped how they faced the move.
How this fits with other research
Leigland (2000) saw staff hide clients from the public to reduce stigma. Burack et al. (2004) show clients already feel that stigma inside. Together they reveal both sides of the same problem.
Cameranesi et al. (2022) measured big quality-of-life gains six months after leaving institutions. Burack et al. (2004) explain part of why moves can still feel hard: stigma worries travel with the person.
Werner et al. (2012) warn that most stigma scales lack solid theory. Burack et al. (2004) give rich detail those scales often miss, so mixing both approaches may build better tools.
Why it matters
Before you help a client move, ask, "What do you think people will say?" Use their answer to pick housing that fits their identity. If they fear shame, plan extra supports like peer mentors or valued social roles. This simple check can ease the transition and boost community success.
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02At a glance
03Original abstract
BACKGROUND: Social stigma and its impact on the life opportunities and emotional well-being of people with intellectual disabilities (IDs) are a subject of both practical and theoretical importance. The disability movement and evolving theories of self, now point to individuals' ability to develop positive identities and to challenge stigmatizing views and social norms. METHOD: This paper presents findings from a phenomenological study of 10 individuals making the transition from their family home to live more independently and 18 individuals moving from a long-stay hospital to live in community housing. It builds on an earlier data set obtained from people living at home with their families and examines: (1) people's awareness of stigma, and (2) their modes of adaptation to stigma. RESULTS: The participants all believed that they faced stigmatized treatment and were aware of the stigma associated with ID. They presented a range of views about self in relation to disability and stigma. These views included regarding themselves as part of a minority group who reject prejudice, and attempts to distance themselves from stigmatizing services and from other individuals with IDs. CONCLUSIONS: The findings are discussed in relation to theories of self and the importance of considering psychosocial factors is stressed in clinical work with people who have IDs.
Journal of intellectual disability research : JIDR, 2004 · doi:10.1111/j.1365-2788.2003.00561.x