The challenges of identifying and disclosing disabilities that others can't see
Posted June 26, 2013
by Alecia M. Santuzzi, Ph.D., guest contributor
When we use the term “disability,” many people think about the obvious, including mobility impairments and common sensory disabilities, such as blindness. However, disabilities also include a number of other conditions that typically are invisible to others.
All of these conditions can disrupt everyday activities. You might have spotted someone with multiple sclerosis who looked “normal” but was using a parking space that was reserved for persons with disabilities. You might have seen a student with a learning disability request extra time for an exam and wondered whether the claimed disability was legitimate. No one really knows for sure whether someone has an invisible disability unless it is disclosed.
The decision about whether to disclose an invisible disability to others can weigh heavily on an individual, making social and work situations especially challenging (Clair, Beatty, & MacLean, 2005). With legislation such as the Americans with Disabilities Act (ADA; 1990) and the more recent ADA Amendments Act (2008), people who are qualified for positions and have disabilities should feel protected from unfair discrimination and free to disclose.
Moreover, people must formally disclose their disabilities to receive accommodations in school or at work. Not disclosing and requesting accommodations can be detrimental to the performance evaluations of a student or worker if the disability interferes with required tasks. Without knowing that a disability is involved, teachers, supervisors, and co-workers are left to assume that unexpected poor or inconsistent performance accurately reflects the person’s ability to do the tasks.
Research shows that the burden of concealing a disability creates strain in social and work situations that might negatively affect health and well-being (Chaudoir & Quinn, 2010). In contrast, disclosure relieves the strain of hiding the condition and increases the likelihood that the person will find and develop a social support network with others who might have similar conditions or experiences.
Despite the noted benefits of disclosing, research reports that individuals with invisible disabilities often do not disclose their conditions, especially if they are young and have recently acquired the disability (Baldridge & Swift, 2013).
There are a number of functional reasons why people with invisible disabilities might not tell others.
First, even if protected by law from overt discrimination, they still face potential prejudice or negative evaluations from others. Research suggests that there is a social stigma attached to having a disability, especially for psychological or psychiatric conditions (Jones et al., 1984; Stone & Colella, 1996). Some people with invisible disabilities might be willing to conceal their conditions and forego accommodations to avoid being treated differently or negatively by others.
Second, disclosure can raise questions about whether the disability is legitimate. When someone who “looks normal” claims to have a disability and requests special accommodations, observers might question whether a real disability is involved. Instead, others might assume the person is only trying to gain special privileges (Colella, 2001; Paetzold et al., 2008). In addition to dealing with the potential stigma associated with having a disability, persons with invisible disabilities risk the additional stigma of being viewed as someone who is falsely seeking personal gain.
Here’s another factor that many people might not consider: Some people might experience symptoms of conditions that qualify as disabilities, but they do not realize that they are experiencing something more than just normal variation.
For example, a student who has a learning disability might experience high levels of frustration and poor performance in school, but assumes that he or she is just low in ability (Licht, 1983). Someone who recently developed a hearing impairment might ask people to repeat sentences or to speak louder, but does not connect that experience to having a disability. That person might assume that it is just normal variation in hearing or that the environment was making hearing difficult (Southall, Gagné, & Jennings, 2010).
Invisible conditions are also more difficult to detect by healthcare providers, leading many such conditions to go undiagnosed or be misdiagnosed. Research has reported that the process of being diagnosed with a learning disability often involves collecting multiple conflicting diagnoses by healthcare providers over a long period of time (Higgins, Raskind, Goldberg, & Herman, 2002). Making matters more complicated, the clinical criteria for some conditions might change over time.
In summary, individuals who have (or think they have) invisible disabilities must carefully weigh the potential benefit of avoiding social stigma by not disclosing against the costs to health, well-being, and performance. The current research cannot prescribe one clear way for persons with invisible disabilities to manage their identities and the disclosure process across all social and work situations. Some situations involve more risk of stigma than others. Some situations require more effortful ways to hide the disability than others. Also, some school and work tasks are more relevant to certain disabilities than others.
It is clear, however, that employers, teachers, and others should be aware of the unique challenges related to invisible disabilities. The decision to disclose is not an easy one. For many people who are experiencing physical or psychological symptoms that are not easily observed, whether they have a disability or not may be unclear—even to them.
Alecia Santuzzi is an assistant professor in psychology at Northern Illinois University. Her research examines the role of social stigma and disclosing stigmatizing information in social and work situations. Her recent work focuses on how people react to disability and manage their own disabilities in the workplace. She also examines how relying on technology for work communications might change the social processes that typically are disrupted by social stigma.
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Southall, K., Gagné, J. P., & Jennings, M. B. (2010). Stigma: A negative and a positive influence on help-seeking for adults with acquired hearing loss. International Journal of Audiology, 49, 804-814.
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