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Article Excerpt
There 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. Although self-esteem and emotional support from family and friends played a significant role in their samples' adjustment, participants also reported that social discrimination had a significant impact on acceptance of disability. In other words, respondents with disabilities were less likely to accept their disability when they perceived they were discriminated against and/or devalued by society. Li and Moore concluded that persons with disabilities are often segregated and isolated, being left on their own to master problems posed by a perceived inaccessible or ambivalent community. In addition, the authors concluded that the re-formation of self-concept following an injury is intricately tied to one's perceptions of how society views/treats the individual.
A more recent study exploring how external factors may impact individual affect focused on disability related variables and loneliness (Hopps, Pepin, Arseneau, Frechette, & Begin, 2001). Hopps and associates assessed 39 adults with physical disabilities and found that loneliness was negatively and significantly associated with physical independence and social skills in situations involving persons without disabilities. Individuals who lacked access to the community were unable to regularly practice social skills, and reported a high correlation between loneliness and social anxiety (r = .66). Hopps et al., concluded that because reduced physical independence appears to be linked with loneliness, social programs and policies concerning enhancing the physical and social environment for persons with disabilities may reduce perceptions of loneliness. DiTomasso and Spinner (1997) similarly noted that community access, negative attitudes of others, transportation and physical access barriers are all important social integration obstacles for persons with disabilities, and that lonely people typically report being less socially integrated than those persons who are not lonely.
Finally, in a content analysis of 166 letters to the editor in subscription magazines New Mobility and Paraplegia News which are primarily intended for consumers with physical disabilities, Marini, Bhakta and Graf (in press) found consumer concerns fell under one of seven major themes. Specifically, the greatest frequency of letters (34%) dealt with frustration over inadequate accessibility including public accommodations, despite legislation having been passed 18 years ago. Lack of appropriate access to hotel rooms, restaurants, taxis/transportation, wheelchair parking violations, airline travel, and restaurant bathrooms were among the more frequent complaints. Other concerns included health issues, adaptive equipment, financial concerns and frustrations with the Medicare/Medicaid, and negative attitudes of others.
Overall, the everyday lived experiences of persons with spinal cord dysfunction when queried appear to be intertwined with what is going on in their world. A number of researchers have suggested that an individual's self-concept is intricately linked to feedback they perceive from others in their environment (Charmaz, 1995; Lewin, 1936; Li & Moore, 1998; Shontz, 1991; Trieshmann, 1988). Despite improved quality of life, better legislation concerning civil rights, and improved adaptive technology for persons with disabilities in the U.S., there still appears to be an underlying sentiment among those with mobility disabilities that links adaptation with perceptions and frustrations over a perceived inaccessible environment and an ambivalent society (Makas, 1988). As such, the primary research question in the present study was simply to allow participants to write about what best signifies their disability experience in 100 words or less.
Significance of the Study
Studies related to the impact of spinal cord dysfunction have generally used survey data in which the participants are directed to answer questions designed by the researcher. This study allowed participants to create the direction of the research discussion via PAR (Turnbull, Friesen, & Ramirez, 1998). Specifically, participants had no restrictions regarding what they could write about; thus they consequently guided what the findings would be. Qualitative research by and large uses a limited number of participants to gather in-depth information; however, it also generally restricts data collection to a few individuals due to the unmanageability of large amounts of text and thus restricts generalizability due to the small number of participants. The current study sought to mitigate those restrictions somewhat by limiting the participants to about 100 words and requesting they write "what is most important" from a larger group of 78 individuals with spinal cord dysfunction.
Methods
Participants
Seventy-eight adults with spinal cord dysfunction participated in this study. The...
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