Employees with non-visible disabilities face a decision with every new employer, co-worker, boss and client: to disclose or not to disclose. Such a decision is a personal one, and it probably will be based on the nature of the work environment, the disability and the likelihood that it will impact the workday. Employers can create a workplace environment that supports people with disabilities, including employees who have chosen not to disclose their conditions.
Some employees have learned the hard way to be cautious.
Marilyn Heywood Paige was fired just days after her boss noticed that she wore an emergency bracelet indicating that she has epilepsy. “She said she just didn’t think I was quite the right fit,” though Paige was told there were concerns about her safety.
Her advice to others with non-visible disabilities is clear: “Don’t disclose it unless you absolutely have to. You don’t know how people will react.”
Kimberly McCabe knows all about such reactions; she has experienced some good and some bad. “In a previous Fortune 500 job, someone called HR because they thought I was being abused,” she told SHRM Online. Her mostly invisible condition, Von Willebrand’s Disease, results in heavy menstrual bleeding, anemia and bruising. When she explained her situation to HR and her colleagues, they said they were sorry if they caused any embarrassment. “I told them I thought it was great that they cared so much,” she said.
That wasn’t the only awkward experience McCabe had. “I was once called into my boss’s office and scolded for going to the toilet too frequently,” she said of another employer. “I was too embarrassed to make an issue.”
But the reactions at other workplaces have been better.
In June 2007, McCabe joined the web technology firm Oshyn Inc. and decided to explain the situation to her small workgroup. “They were so incredibly supportive. They never made me feel bad or embarrassed in any way,” she said. “I once had a mild hemorrhage and was really weak for a few days. They were a dream come true; they checked to make sure I was OK, asked if I needed to take time off and asked what could make me feel better.”
Preparing the Workplace
In Getting Support, Supporting Others: A Handbook for Working with Non-Visible Disabilities, produced for the benefit of employees and people managers by Ernst & Young (E&Y), a global professional services firm, non-visible disabilities are grouped into three broad categories:
- Chronic health conditions and illnesses (such as diabetes and cancer).
- Sensory impairments (hearing loss, low vision, mobility limitations).
- Mental health and learning disabilities (depression, anxiety disorders, attention-deficit hyperactivity disorder).
E&Y uses “non-visible” rather than “hidden” to refer to disabilities that are not obviously apparent to avoid any implication of concealment or shame.
“There are a host of practical things that may go along with working with a person with a non-visible disability,” according to Lori Golden, who leads AccessAbilities, E&Y’s initiative to build an inclusive work environment for employees with disabilities. “With a non-visible disability or non-apparent disability, people don’t necessarily know how to react. … They don’t necessarily know the impact on the person,” she said. “They are likely to forget or to make assumptions of health because they are not seeing anything that is obvious.”
One Employee’s Story
An E&Y employee, who will be referred to as “Caroline” for privacy reasons, chose to disclose her disability—a systemic form of arthritis diagnosed at the age of 19—about six months after she joined the firm. At the time, she was experiencing a flare-up of her condition, which was, in her words, “so bad I couldn’t walk.” Because she had a trusting relationship with her “counselor”—the executive assigned to advise her throughout her employment in the absence of a fixed supervisor—she chose to disclose her condition to him.
“It was the best thing I ever did,” she told SHRM Online, because his response was to say, “I’m so sorry you are going through this. What can we do to help you?”
Though he had not suspected that she had such a condition, Caroline’s counselor told SHRM Online in a separate interview that his immediate concern was for her—her health and her family: “It was a lot for her to deal with personally,” he said.
Eventually, their conversation turned to business. “We talked about what we would need to do from an engagement point of view and, more importantly, from a communication point of view so we could respond to her needs in a timely manner,” he said. “We realized we both needed to be very open about this event so we could manage it best for both of us going forward.”
Though Caroline’s news came as a surprise, her counselor said he was prepared for such a disclosure by the discussion and “organized infrastructure at E&Y around flexibility and inclusivity.” It’s important for managers to “create an open communication environment” in which managers and employees talk about the employee’s needs, as well as the needs of the business, he added. “Everyone has other stuff going on in their lives.”
Some say that a positive disclosure experience can pay off in employee loyalty and productivity.
Michelle Brown, associate publisher of MR Magazine, a Business Journals Inc. publication, joined the company in 2002, three years after being diagnosed with multiple sclerosis (MS). However, it wasn’t until 2005, when a series of early-morning steroid treatments caused her to reach her office in New York a little late, that she decided it was time to disclose her condition.
Although her manager was out of town at the time, Brown decided to tell him that she had been late, and why. “He was glad I ‘came clean’ about being late when he was away. Those were his exact words,” she told SHRM Online. “He was 100 percent supportive,” she added, and told her he knew of other people with MS.
“The company has always been 100 percent supportive of all of its employees’ personal needs as long as we are all doing the jobs expected of us,” Brown said. “I believe it breeds a strong sense of mutual loyalty and employees give it their all for the company.”
The company supported Brown again when she returned from a September 2006 business trip with a limp and needed to drive to work instead of take the train. “By June 2008, I could no longer drive and was in a wheelchair full time,” she explained. “My boss and the owners of my company agreed to pay for a private car service to bring me to work a few days a week, but when I couldn’t get in and out of the car anymore, they let me work from home.
“Other companies would have let me go or offered me a lesser job,” she noted. “At Business Journals, I got promoted.”
“Dealing with a disability can be depressing and can affect an employee’s motivation to work,” said Brown’s boss, Stu Nifoussi, publisher and executive vice president of Business Journals Inc. “In Michelle’s case, working was a motivator, not only to keep the money coming in but also to have contact with the outside world and give her a reason to get out of the house each day—or as often as possible. She was driven to succeed in spite of her challenges. How can you not support someone like that?” he added.
Brown said managers should “have empathy and be supportive. … Disclosing a problem is difficult and stressful. If you support your employees, they will give back to the company through productivity.”
Paige said that if an employee reveals a disability, a manager should:
- Ask for information, without judgment, such as what signs to look for to indicate that the person is having a medical emergency and what they would like you to do besides calling 911.
- Know where the employee keeps emergency medicine and personal phone numbers if needed.
- Get on the web and learn something about the condition to be better prepared for and sensitive to the employee’s needs.
- Avoid showing pity or making comments such as “Oh, you poor thing!”
HR needs to let employees know what kind of resources are there for them, E&Y’s Caroline said, and to remind them that the reasons for needing those resources are confidential. A simple question—what do we need to do to help you be successful?—can go a long way, she added.
For example, E&Y’s AccessAbilities Network taught her about intermittent leave under the Family and Medical Leave Act (FMLA).
Golden said HR professionals can make the work environment better for people with non-visible disabilities by:
- Raising awareness. “Many people don’t realize that most of the disabilities we are encountering in a work environment are probably not visible,” she said. “There are people all around us who have health issues, mental health issues, et cetera, that affect the way they work and live each day.”
- Educating employees and managers at a very basic level, covering things such as “language and etiquette and ways to be inclusive.” One of E&Y’s “quick guides” discusses things that are helpful to say to a colleague with a serious health condition—and what is not helpful.
- Communicating the organization’s commitment to supporting people with visible and non-visible disabilities. This is “absolutely critical,” according to Golden, because otherwise employees might choose not to disclose a disability even if they need an accommodation to perform their job effectively. “The only way we can get people to speak up is in what we write about the organization, the messaging leaders use, and the images we use internally and externally,” she added.
Building Collegial Relationships
Keith Adams, a 45-year-old software developer, had a “huge manic episode” in 2006 that resulted in a diagnosis of bipolar disorder. The episode, which he said was triggered by “an intense week of business travel,” was documented in his memoir, Broken Whole: A California Tale of Craziness, Creativity and Chaos (Chipmunka Publishing, 2010).
In addition to telling the company about the book, Adams decided to tell two work colleagues about his condition as well. “Depression occurs with, well, depressing regularity when you have bipolar,” he told SHRM Online. “There was a period during which it became so bad that I knew I was going to have to start taking ‘mental health’ days at work now and then. … I didn’t want to have to lie about why I was taking days off, nor did I want to appear to be a malingerer.
“My working relationships with these two colleagues became stronger as a result,” he added. “One of them suggested that I talk to HR about the depression more specifically, since it might qualify as FMLA leave, and that’s indeed what subsequently happened. Since then, I’ve only actually taken a couple of FMLA days for depression, but it’s the knowledge that I can do so that makes it less likely I’ll actually need to.”
Deciding to Disclose
Despite the efforts of organizations such as E&Y, some employees choose to keep their non-visible disabilities to themselves. “It comes as a very personal decision for people,” Caroline noted. Before disclosing, “you need to know the culture of the organization where you are working … to know who you can confide in,” she said.
Some choose not to disclose out of fear or denial.
“My clients report that they don’t really have a hearing loss and that they are concerned they could get terminated if their employer found out about their hearing impairment,” said Katie Schwartz, a corporate speech pathologist and speech coach.
Others see no reason to do so. “Mary,” an educational coordinator and instructor in the Southeast, has decided not to disclose her vision condition to her employer even though her job involves “a lot of driving, reading and computer work.”
“I have the beginnings of macular degeneration, an eye disorder that destroys central vision for some people,” she told SHRM Online. “I took a new job based specifically on the excellent short-term and long-term disability coverage the organization offers, although they don’t know that was what attracted me.”
She said she will disclose her condition if she begins having difficulty at work.
“Anytime you have to ask something of a company, there’s a concern,” Caroline noted, such as colleagues believing that you are not contributing as much, that you are getting added flexibility or that you can’t take on certain opportunities. “I didn’t want to be perceived as a slacker,” she said. But she found that her colleagues were interested in having her succeed. The reaction she conjured up in her mind “was much worse than it ended up being,” she said.
Because many workers might choose not to disclose their non-visible disabilities, Golden says it’s important to avoid assumptions about what people can’t do as well as assumptions about what people can do. For example, one of E&Y’s training videos portrays a team of employees taking the stairs from one floor to another for a meeting. Yet when one member of the team stops to wait for the elevator, a colleague turns back and says, “Come on, don’t be lazy,” not knowing that the individual has a non-visible disability and cannot use the stairs.
“It’s very easy to make assumptions” when you are not seeing a visible disability, Golden said.
Rebecca R. Hastings, SPHR, is an online editor/manager for SHRM.
Has the Americans with Disabilities Act Made a Difference? SHRM Online Diversity Discipline, July 9, 2010
Hiring Employees with Autism, HR Magazine, June 2010
Understanding the Impact of Employees with ADHD in the Workplace, SHRM Online Diversity Discipline, Feb. 4, 2009
Disability Inclusion Requires Common Sense, SHRM Online Diversity Discipline, Nov. 6, 2008
Resources Help Employers, Individuals with Multiple Sclerosis, SHRM Online Diversity Discipline, April 14, 2008
Study: Dyslexic Employees Might Be Skilled Innovators, SHRM Online Diversity Discipline, Nov. 16, 2007
Disability Etiquette Starts with Common Sense, SHRM Online Diversity Discipline, Oct. 1, 2007
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