Emergent Disabilities and Centers for Independent Living: The Case of Chronic Fatigue Syndrome

Abstract

Over 500 Centers for Independent Living exist internationally. Centers for Independent Living are community-based, empowerment-oriented organizations that provide advocacy and linkage to resources for individuals with a wide range of disabilities. Historically, people with invisible disabilities such as chronic fatigue syndrome (CFS) have not made extensive use of Centers for Independent Living, and have not been formally introduced to the independent living philosophy. Conversely, Centers for Independent Living have encountered difficulty outreaching to and serving individuals with CFS, and have not been adequately informed about their resource needs and entitlements. The purpose of this study was to assess attitudes and knowledge about chronic fatigue syndrome among staff members of a Center for Independent Living before and after an educational intervention designed to raise awareness about CFS and provide guidance about the resource needs and entitlements of the CFS population. Before the intervention, over half (62%) of the staff members regarded CFS as having a biological cause, most considered CFS as a severe or very severe condition (76%), and most (74%) were of the opinion that an empowerment-oriented, independent living philosophy would benefit individuals with CFS. As a result of the intervention, all (100%) respondents either gained increased factual information about CFS, increased empathy toward individuals with CFS, or increased general awareness of CFS. Most (67%) respondents reported that the intervention changed their prior level of awareness of CFS, empathy toward those with CFS, or awareness of the medical legitimacy of CFS. The implications of these findings are discussed in terms of their relevance for community-based alternatives to health care for individuals with emergent disabilities in the 21st century.

Can the Social Model Explain All of Disability Experience? Perspectives of Persons With Chronic Fatigue Syndrome

“…Instead of having to battle against the overgeneralization of their impairments and the medicalization of their condition, they experienced barriers to visibility and exerted substantial energy to establish and find persons who would accept its legitimacy. These experiences are consistent with findings from other research indicating that persons with CFS seeking medical services face disbelief, misunderstanding, misinformation, and an overemphasis on psychological explanations (Anderson & Ferrans, 1997;Banks & Prior, 2001;David, Wessely, & Pelosi, 1991;Green, Romei, & Natelson, 1999;Taylor & Eisele, 2003). Despite evidence against the hypothesis that depression is responsible for CFS (Antoni et al, 1994;Friedberg & Krupp, 1994;Ray, 1991), many medical practitioners, as well as friends and families of persons with CFS, continue to believe that the illness is related to psychological dysfunction, and that the symptoms can be attenuated, relieved, or eliminated with psychotropic medications or if the individual would only learn to cope with them more effectively (Conant, 1990).…”

“…This finding is consistent with the advocacy activities of major CFS self-help organizations that are also focused on such things as changing the diagnostic label for the condition in order to achieve better medical recognition of its legitimacy, improving the accuracy of medical diagnosis of the condition, and educating medical professionals about the condition and its most effective treatments (Taylor & Eisele, 2003). Thus, when the participants did become involved in local or national CFS organizations, as a few in this study did, they were naturally directed toward these types of advocacy efforts.…”

“…Since these studies involved self-selected samples, it is possible that acceptance of CFS was even lower among nonresponders (Stein, 2001). As a consequence of professional misinformation and denial, individuals with CFS consistently report negative experiences with health care providers characterized by disbelief, lack of knowledge, misunderstanding, minimization of symptoms, overemphasis on psychological explanations, and a general lack of responsiveness or treatment planning (Anderson & Ferrans, 1997;Banks & Prior, 2001;David, Wessely, & Pelosi, 1991;Green, Romei, & Natelson, 1999;Taylor & Eisele, 2003). Individuals with CFS also face interpersonal stigma related to misunderstanding or denial by family, friends, colleagues, and others.…”