Disability Disclosure vs. Privacy

She has fragile skin. Bruises and scars, hidden by clothing, cover her legs. And she suffers from chronic joint pain. “To meet me, you’d have no idea that I have any physical challenge,” says the Ernst & Young human resources coordinator who suffers from a connective tissue disorder. “The truth is that every day I am in pain—every day—and I just live through it.”

She is one of the scores of Americans with “invisible disabilities,” chronic health conditions that are not immediately obvious, such as diabetes and cancer, sensory impairments such as reduced vision, mental illness such as bipolar disorder and depression, and learning disabilities. The accounting and consulting firm asked that her name not be used to avoid discrimination by insurance companies or others. Those concerns underscore the challenges that employees with non-visible disabilities face when balancing privacy with disclosure.

No study has identified how many Americans have non-visible disabilities, but more than 18 percent of Americans report some level of disability, U.S. Census data show.

Ernst & Young introduced a handbook in July to provide a basic level of understanding of non-visible disabilities among employees in hopes of fostering an environment “where everybody is limited only by talent, skills and energy,” says Lori Golden, who leads AccessAbilities, Ernst & Young’s initiative to build an inclusive work environment. “We really want others to get educated about this so we can all do it better.”

The 17-page handbook defines terms such as “disability,” “non-visible disability” and “reasonable accommodation”; explores the pros and cons of disclosure; and addresses questions that employees with disabilities and their managers might have about how much information to share, how to handle questions about accommodations from co-workers, and how to deal with resentment or backlash from colleagues who perceive an accommodation as special treatment. “One of the most difficult decisions an individual with a non-obvious disability has to make is whether to inform people or not,” Golden says.

Companies might not understand why employees choose not to disclose their disabilities. “Some employers feel like, ‘Why didn’t you tell me before?’ ” says Barry Taylor, legal advocacy director at Equip for Equality, which advocates for children and adults with disabilities in Illinois. “They don’t understand that you’re not required to disclose.”

Ernst & Young’s Golden sees risk in three areas—health, safety and performance—in not disclosing non-visible disabilities after being hired. “We feel that it’s really important that people with non-obvious disabilities understand that there are risks to not informing the organization about a disability,” Golden says. “If we don’t know that there is a disability at work and we haven’t had an opportunity to develop any accommodations and that person’s performance is not up to par, the disability does not afford protection.”

A recent study for the Kessler Foundation and the National Organization on Disability provides insight into why some workers choose to share information about their disabilities. The most common reasons: It was a visible disability (32 percent), it hurt job performance (33 percent) or the employee simply felt that others should know about it (49 percent), according to the survey conducted this year by Harris Interactive. Respondents could select more than one reason, so the total exceeds 100 percent.

Securing reasonable workplace accommodations, of course, requires open communication, says Kathleen Lee, project coordinator and business outreach specialist at Cornell University’s Employment and Disability Institute. “Reasonable accommodations are actually less about the law and more about just good common sense and about ensuring that employers enable employees to be productive in the workplace and maximize their potential.”

Ernst & Young’s handbook largely avoids traditional wording such as “disclosure” and “accommodation” in favor of “inform” and “adjustment.” Golden believes that “disclosure” implies purposeful concealment and that “accommodation” connotes a favor, whereas “adjustment” suggests a slight modification in how things are done. “We’re not trying to follow the dominant thinking but to shape it in ways that will work for our people and that will open up opportunities for people with disabilities in the wider marketplace,” she says.

Martha Artiles, global chief diversity officer for temporary staffing firm Manpower Inc., likes what she calls the forward-thinking terminology. She plans to adopt the handbook and share it with clients. “When you think about the fact that most people aren’t comfortable disclosing their disability unless they have to ask for an adjustment,” Artiles says, “they exist much more than we know.”

Workforce Management, September 2010, p. 3 — Subscribe Now!

The information contained in this article is intended to provide useful information on the topic covered, but should not be construed as legal advice or a legal opinion. Also remember that state laws may differ from the federal law.