Issues of health and wellness for people with disabilities are becoming prominent issues on the national health agenda (United States Department of Health and Human Services, 2000). New models of health and wellness specific to persons living with disability are attempting to understand and operationalize health and wellness within the disability experience. These models show what many people living with disabilities conceptualize that a person can be healthy and well and live long-term with disability (National Institute of Disability Rehabilitation Research, 2000; Institute of Medicine, 1991). Much of this shift in perspective stems from a new disability paradigm that views disability as a situational experience, a function of the relationship between the individual and the environments that surround that individual (cultural, social, natural and architectural) (NIDRR, 2000).
Preliminary studies exploring health and wellness indicate that people with disabilities hold both common and unique definitions of health and wellness. These encompass a range of domains including spirituality, physical health, social engagement, as well as environmental and contextual factors (Maley, Constanza-Smith and Tangeman, 1998, Nosek, & Turk, 1997). These findings complement those of other health studies which suggest that people with disabilities have somewhat different definitions of health and wellness than practitioners and health and wellness professionals. A recent study by Benyamini, Idler, Leventhal, and Leventhal (2000) found that people with disabilities and those without disabilities perceive health as a complex, multidimensional concept including in their definitions not only physical health, but being able to do what they want to do, and having a general feeling of well-being. Additionally, Jensen and Allen (1994) find that health for individuals living with disability is perceived within the context of the self and others. Influences on perceptions of health include life roles, choices, relations, abilities, beliefs, practices, social supports, interpersonal relationships, and culture. They conclude that interpersonal, intra-personal, and extra-personal dimensions affect the experience of wellness. From these beginning works arise questions about how people with disabilities experience health and wellness in their everyday lives. What does being healthy and well mean to them?
These are the questions addressed by this paper. The focus of this paper is to explore how people living with long-term disabilities define and conceptualize health and wellness and to explain what they perceive to be the major facilitators and barriers to health and wellness.
Ninety-nine adults with long-term disabilities including people with diagnostic conditions such as cerebral palsy, polio, multiple sclerosis, amputation and spinal cord injury were recruited for the sample. The sampling method was purposive in that we specifically recruited participants who had certain diagnostic conditions and who varied in age, gender, race, and ethnicity. We recruited participants through rehabilitation centers, local disability service agencies and organizations, and independent living centers in Portland, Oregon, the San Francisco Bay Area, and Houston, Texas.
Participants ranged in age from 22 to 82, with a mean age of 47.6 years. They described themselves as identifying with the following racial or ethnic categories: 53% Caucasian, 14% Hispanic, 13% African American, 10% Native American, 2% Asian American, 1% Pacific Islander and 7% reported their ethnicity as "other". Forty-three (43%) percent of the participants were male. The most common diagnostic conditions reported were multiple sclerosis (n= 20), spinal cord injury (n = 18), cerebral palsy (n = 15), polio (n = 12), and amputation (n = 8). Other participants reported experiencing disabilities such as arthritis, neuromuscular conditions, stroke, diabetes, joint and connective tissue disease, brain injury, and spina bifida. …