By: Keaton Fletcher
The Americans with Disabilities Act of 1990 defines disability as a physical or mental impairment that substantially limits a major life activity such as hearing, seeing, speaking, walking, breathing, performing manual tasks, caring for oneself, learning, or working. Most employers are required to provide reasonable accommodations for their employees with disabilities, meaning that changes to the job or environment (that don’t cause undue hardship to the organization) should be made to allow the employee to complete the job tasks (e.g., provide/modify equipment, modify the job design or schedule, alter training documents/procedures/exams/resources). To get access to these resources, though, it is necessary for an employee to disclose their disability status, and many disabilities are not readily visible, placing the burden of disclosure on the individual with the disability. WSC Network Member Lisa Finkelstein, and WSC Advisory Council Member, Deborah Rupp, along with a team of researchers led by Alecia Santuzzi, published a study that examined why people with concealable disabilities choose to disclose their disability status.
Disabilities that are concealable can be particularly strenuous when deciding whether to disclose given the concern that others may question the truthfulness of the disclosure. Typically, if people can conceal their identities, they often do. Results of 28 in-depth interviews with individuals with disabilities suggest four factors that may lead to whether individuals disclosed their disability status. First, the salience of their disability (i.e., how aware the individual is of their disability) was often reported as related to disclosure. People who thought frequently about their disability, or were in moments/environments where the disability is particularly salient, were more likely to disclose their disability. Second, the strain associated with the disability (i.e., negative experiences of the disability itself) was often reported as a reason to disclose. Third, individuals who expected ineffective social support (i.e., people wanting to help, but not actually helping) reported being less likely to disclose their disability. Fourth, people who were concerned about a potential stigma (e.g., invalidation, pity, negative judgment) associated with their disability were also less likely to disclose their disability.
The results of the interview also highlighted the role of humility and discretion in the choice to disclose one’s disability. Many individuals felt others may have it worse than them, or that they did not really need to disclose. Some chose to adapt their environments, avoid relevant situations, or control their symptoms themselves rather than disclose to their organizations. Those that disclosed, primarily disclosed to coworkers and supervisors, rather than Human Resources. When people did disclose, they tended to choose language that was either ambiguous or formal/medical, and used it as a way to explain their own behavior or encourage reciprocal disclosure (i.e., disclosing so the other individual feels safe to disclose as well). Some reported feeling socially responsible to disclose, potentially viewing themselves as representation for other individuals with similar disabilities, as a way to break stigma.
Overall, the authors argue that choosing to disclose one’s concealable disorder can be a particularly stressful event, with many indicators pushing people to choose not to disclose, particularly not to HR. The authors suggest that research and policies should be designed to better understand/encourage how to make disclosing easier, to ensure people receive the accommodations they need.