The social and medical models of disability are sets of underlying assumptions explaining people's beliefs about the causes and implications of disability. The medical model is the predominant model in the United States that is associated with the belief that disability is an undesirable status that needs to be cured...
Objective: There are currently 6,000-7,000 recognized rare disorders, affecting approximately 1 in 10 Americans. While each rare disease is unique, the experience of having a rare condition is relatively common. It is this common experience of having a rare disease during the Covid-19 pandemic that we aim to represent with...
Negative attitudes towards people with disabilities persist in our society, limiting the inclusion of people with disabilities in a multitude of social roles. Despite existing research on the nature of these attitudes and interventions to improve them, people with disabilities continue to cite social barriers as some of their greatest...
Cancer-related fatigue (CRF) disproportionately effects hematologic cancers when compared to solid tumor malignancies. Self-management of CRF has received increasing attention in solid tumor cancers, however, fatigue self-management in hematologic cancers has received significantly less systematic investigation. The purpose of this research was to determine effective strategies for self-managing fatigue across...
Moebius syndrome is a rare congenital condition that results in facial paralysis. A recent study of adults with Moebius syndrome identified their social challenges and coping strategies. The present study extended previous research by examining these factors among teenagers with Moebius syndrome. The study included 10 teenagers with Moebius Syndrome...
There is a lack of research surrounding people with facial differences (FD), particularly on how their FD identity is interwoven with their other identities and how they relate to it. With a note on how it relates to their experience of stigma. This study is designed to utilize the narratives...
In the US, a disease is classified as rare if it affects less than 200,000 individuals a year. Despite considerable similarities, individuals with rare diseases (RDs) report worse life quality and satisfaction with life (SWL) than those with common chronic conditions. One potential avenue to increase SWL is through improving...
About one-quarter of the U.S. adult population lives with a disability, yet ableist presentations of disability as a tragedy in need of a cure (i.e., the medical model) continue to predominate, even in higher education. Previous, qualitative research showed that people with disabilities (PWDs) desire changes in individual and societal...
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...
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...