One Hundred Words about Disability
2009; University of Social Welfare and Rehabilitation Sciences; Volume: 75; Issue: 2 Linguagem: Inglês
ISSN
0022-4154
AutoresNoreen M. Graf, Irmo Marini, Charlene J. Blankenship,
Tópico(s)Inclusion and Disability in Education and Sport
ResumoThere exists a plethora of literature regarding disability issues across a wide spectrum of researcher interests. Our field continues to be well researched in many areas, including societal attitudes (Antonak & Livneh, 2000; Marinelli & Dell Orto,1999), employment discrimination (Baldwin & Johnson, 2000; DeLeire, 2000; Szymanski & Parker, 2003), individual affect (Antonak & Livneh, 2000; Marinelli & Dell Orto,1999), quality of life (Bishop & Feist-Price, 2002; May & Warren, 2001; Norstrom & Lubkin, 1990), and coping or adaptation to disability (Livneh, 1991; Smart & Smart, 2006). The research process typically begins with the researchers' determination of a research question which is often an extension of previous studies and grounded in pre-existing literature. The question is then operationalized in order to permit participants to respond to the researchers' question. While this approach has resulted in the commendable expansion of knowledge, the end result is contingent upon, and limited to, a framework that has been constructed by the researcher. Participatory action research (PAR) in rehabilitation counseling is an approach to research that directly involves persons with disabilities in providing input regarding study design and direction (Turnbull, Friesen, & Ramirez, 1998). This approach permits participants not only to answer questions, but to assist in composing them as well. Despite an editorial call for greater PAR approximately a decade ago, few such studies have appeared in the literature. The purpose of the present study was to have participants with mobility impairments guide the research by composing in 100 words or less what they believed to be the most significant aspects of their lived experience with a disability. We hypothesized from an earlier study that participants would primarily write about everyday external issues regarding disability such as accessing healthcare, transportation and environmental access as well as perceived negative societal attitudes (Marini, Bhakta, Graf, in press). Review of the Literature In the present study, our literature review focused on external issues implicated in living with disability as well as its potential impact on the individual. Kroll, Jones, Kehn and Neri (2006) for example, held focus groups with persons with spinal cord injuries (SCI) regarding perceived barriers to accessing preventative healthcare. The authors found that persons with SCI were less likely to use preventative healthcare services than the general population despite being at greater risk for secondary complications. Persons with SCI reported numerous access and attitudinal barriers including being denied services, inaccessible exam tables which were too high or small to transfer onto, no wheelchair scales to weigh oneself, lack of medical professionals' knowledge about SCI, insensitive or rude treatment by staff, and perceptions that the physician had preconceived notions that whatever the ailment, it was attributed to the disability. Participants recommended improving physical access to hospital facilities, educating medical professionals about SCI and disability etiquette, and encouraging consumers with disabilities to be more assertive and prepared for their office visit. Other researchers have explored the connection between the individual and his/her environment, noting the resulting impact on one's feelings of self-worth (Charmaz, 1995; Lewin, 1936; Trieschmann, 1988; Shontz, 1991). Although the concept somatopsychology originally formulated by Lewin (1936) explores this individual/environment connection and its impact on self-concept, his original model did not include disability status. Li and Moore (1998) illustrated this connection, however, when they surveyed 1,266 adults with disabilities by examining the relationship between acceptance of disability, demographic characteristics, disability conditions, and psychosocial factors. …
Referência(s)