Hundreds of millions of people worldwide with rare diseases face unique challenges to quality of life (QoL), including stigma and limited support. To address these concerns, many rare disease organizations offer support conferences for people to meet others with their condition. This is the first research to examine the effects...
Purpose/Objective: According to Social Identity Theory, minority group members, like people with disabilities, manage stigma by either “passing” as majority group members or identifying with their minority group. Approximately 15% of the world’s population has a disability, but only a fraction of those individuals identify themselves as people with disabilities....
Background
Moebius syndrome is a rare congenital disorder resulting in impaired facial and eye movement. People with rare diseases like Moebius syndrome experience stigma and a lack of specialized information. Support conferences may provide important forms of social support for people with rare disorders.
Aims
To examine reasons for attending,...
Historically, Psychology education about disability focused narrowly on psychiatric and cognitive disabilities. Furthermore, disability tends to be viewed from the medical model, rather than the social model endorsed by disability scholars, which describes disability as primarily socially constructed. Course offerings for the Psychology departments of 98 top-ranked undergraduate programs in...
PURPOSE/OBJECTIVE: Disability identity involves affirming one’s status as a person with a
disability and incorporating this group membership into one’s identity. It is associated with well-being
in populations of people with disabilities, but its relationship with depression and anxiety
in multiple sclerosis (MS) has yet to be examined. It was...
Although the importance of the face in communication is well-known, there has been little discussion of the ramifications for those who lack facial expression: individuals with facial paralysis such as Bell’s palsy and Möbius syndrome, and facial movement disorders like Parkinson’s disease. By examining the challenges experienced by these individuals,...
Clinicians make a variety of judgments about their clients, from judging personality traits to making diagnoses, and a variety of methods are available to do so, ranging from observations to structured interviews. A large body of work demonstrates that from a brief glimpse of another’s nonverbal behavior, a variety of...
People with facial paralysis (FP) report social difficulties, but some attempt to compensate by increasing expressivity in their bodies and voices. We examined perceivers’ emotion judgments of videos of people with FP to understand how they interpret the combination of an inexpressive face with an expressive body and voice. Results...
This focus group study examined the social experiences of 10 adolescents ages 12-17 with Moebius Syndrome, a rare condition involving congenital facial paralysis. Content analysis revealed five themes: social engagement/disengagement; resilience/sensitivity; social support/stigma; being understood/misunderstood; and public awareness/lack of awareness of Moebius Syndrome. Compared to previous research on adults with...
PURPOSE/OBJECTIVE: Current theories of adaptation to disability do not address differences in adaptation to congenital compared to acquired disability. Although people with congenital disabilities are generally assumed to be better adapted than people with acquired disabilities, few studies have tested this, and even fewer have attempted to explain the mechanisms...