The lack of valid and practical measures for assessing the experience of disability has delayed a full understanding of the factors that influence the participation of people with disabilities in society. With the long-range goal of improving such measurement, we collected in-depth qualitative data through a series of focus group discussions about what it means to live with disability. Persons experiencing a wide variety of physically and mentally disabling conditions participated. Transcripts of these discussions were analyzed to identify some of the ways they describe themselves and their environments. The findings are organized along three general themes: People's narratives about themselves, descriptions of their environments, and their experiences of participation in activities. Experiences situated in the person include bodily sensations (e.g., level of energy, pain, incapacity) and the self (e.g., disability identity, perceived control, body image, sense of loss). Experiences of the environment include the physical world (e.g., the terrain, weather, and the built environment) as well as social surroundings (e.g., effective and ineffective help, stigma and stares, understanding). Experiences of participation often involve complex activities linked to institutional spheres in society such as work, school, and family. Many experiences vary by three central characteristics of the disability: visibility, onset, and trajectory. Visibility refers to the extent that others can easily identify one as having a limitation; onset to the sense of change and loss among people for whom some segment of the life course has been disability-free; trajectory to the likely stability or decline in functioning.
Learning Objectives: Participants in this session will consider the utility of focus groups for creating a fuller understanding of the experience of disability, and subsequently better measures
Keywords: Disability, Data Collection
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.