The Employment Discrimination Experiences of Adults with Multiple Sclerosis

Abstract

Over the years, numerous researchers have voiced concern about the need to remediate the negative impact of multiple sclerosis (MS) on the employment status of adults (Beatty, Blanco, Wilbanks, Paul, & Hames, 1995; Dyck & Youngbloed, 2000; Kornblith, LaRocca, & Baum, 1986; LaRocca, Kalb, Scheinberg, & Kendall, 1985; Phillips & Stuifbergen, 2006; Rumrill, Roessler, & Koch, 1999). Investigations have confirmed the high unemployment rates of working age individuals with MS which range from 40% to 80% (Beatty et al; Gordon, Feldman, Shipley, & Weiss, 1997; Julian, Vella, Vollmer, Hadjimichael, & Mohr, 2008; LaRocca et al.) in a group of adults who are typically in the labor force when diagnosed with MS and who desire to return to work (Gordon, Feldman, Shipley, & Weiss, 1997; LaRocca et al.; O'Day, 1998). The significance of these high unemployment rates is obvious in a culture that places a high priority on the work role and one's identity as a worker. Being employed enables individuals to view themselves as independent and self-sufficient rather than as limited and disabled (Bradley et al., 2004). Working for a living results in a higher income status than either being unemployed or on Social Security benefits (Fraser, McMahon, Danczyk-Hawley, 2003) and is related to higher self-reported levels of quality of life and well being (Aronson, 1997; Khan, Ng, & Turner-Stokes, 2009; Larsen, 1990). Hence, researchers have paid considerable attention to identifying (a) the factors associated with MS that lead to job loss and (b) the personal and rehabilitation responses required to cope with these factors (Devins & Shnek, 2000). In part, the attention devoted to discovering and addressing the causes of unemployment in people with MS is a function of society's positive desire to assist adults with chronic illnesses in their efforts to return to productive functioning (Bradley et al., 2004; Rubin & Roessler, 2008). In part it is due to the fact that many people encounter MS when they are between the ages of 20 and 40 (Larsen, 1990) when they are making substantial progress in establishing their careers (O'Day, 1998). Loss of their contributions has a serious impact on the nation's economic productivity, particularly when one considers that adults with MS have the potential to live an average of 35 years with the condition (Larsen) and that the majority of individuals with MS have completed some postsecondary education either before or after their diagnosis (Hakim et al., 2000; Jackson & Quaal, 1991). Unfortunately it is unlikely that their contributions will be restored without interventions at both the policy and practice levels such as continued efforts to strengthen (a) the employment discrimination protections in the Americans with Disabilities Act (ADA) and (b) on-the-job rehabilitation services such as early identification of barriers to productivity and provision of reasonable accommodations. The functional limitations related to MS are by far the most often cited reason for loss of employment. Khan and Pallant (2007) indicated the extent of this impact in their study with 101 adults with MS, 60% of whom were retired or unemployed. Over 90% of the sample reported symptoms in the following areas: gait pattern, energy and drive, exercise tolerance, emotional stability, muscle power, urinary functions, muscle tone, and muscle endurance. Regarding body structure issues, over 90% of the sample indicated problems with the brain, urinary system, and lower extremities. In comparisons of employed and unemployed adults with MS, Edgley, Sullivan, and Dehoux (1991) found that unemployed individuals were more likely to report problems with mobility and cognition. In their sample of nearly 1200 people with MS, Edgley et al. reported that 78% indicated that they discontinued employment due to symptoms related to their MS such as problems with ambulation (41%) and fatigue (39%). …