For those with rare or serious diseases, becoming a victim of discrimination over their health is a real and unsettling fear.
Rosalind Joffe, a career coach who specializes in helping people with chronic diseases, told Vita that some of her clients find themselves in emotional pain over their work “because they fear they’re going to lose their job, they fear they’re going to leave their job or they’ve been out of work for a period of time because of health problems and want or need to get back to work.”
Many employers are supportive and willing to accommodate the needs of people with certain medical conditions, but discrimination does happen. Case in point: a Texas company recently reached a settlement with the U.S. Equal Employment Opportunity Commission (EEOC) on behalf of three brothers with hemophilia A who were let go from their positions at an oil refinery.
For advice for rare disease patients who may suspect discrimination or want to know what it might look like in the workplace, Vita reached out to employment law expert Merrick Rossein, a former member of New York City’s Equal Employment Practices Commission who teaches at the City University of New York law school.
Losses in productivity and time, along with the interruption of work patterns, are among the fears that Rossein says may lead some employers to discriminate against people with certain health conditions. But he adds that there are ways for workers to protect themselves.
Here are three things patients should know about discrimination in the workplace.
Rare Disease Patients Have Rights: In the U.S., Rossein says a health condition may be considered a disability under the Americans with Disabilities Act. A disability is defined an “impairment that limits one or more major life activities,” Rossein says. That definition includes chronic conditions or even those that may be in remission.
“Workers are generally protected against disability discrimination both under federal law and state and local laws,” Rossein says, adding, “employers must also provide reasonable accommodations to people with disabilities unless it is an undue burden.”
What to Watch For: The signs of discrimination can vary, but Rossein cites some telltale examples of workplace discrimination.
“The signs are very obvious,” he says. “When the boss starts talking about whether the worker can perform the critical functions of the job, complaining about time off to seek medical assistance, or comments about the ability to do the job.”
What Rare Disease Patients Can Do: If workers feel that they may be a victim of discrimination, there are places they can turn for help. Rossein says filing a complaint with their company’s human resources department is a possibility. In the U.S., workers can also go outside the organization as well by filing complaints with the EEOC or state or local employment agencies. An important thing to do is to document any action that appears discriminatory. Rossein suggests rare disease patients send themselves an email every time possible discrimination takes place.
For more information, the EEOC has details on U.S. disability discrimination laws here. Also, the Disability Rights Education & Defense Fund maintains a database of country-by-country laws on disability rights here.