Epilepsy discrimination is illegal, but it’s important to know your rights.
Dealing with the auras in her job as a lawyer with the U.S. Attorney’s Office was difficult but doable. Every so often Labby would experience a heightened sense of smell, the inability to swallow, and an overwhelming sense of déjà vu.
But after the grand mal seizure, Labby’s life changed. Because she could no longerdrive herself to work, Labby’s boss approved a transfer to a branch office in Erie, Penn., near Labby’s family. She telecommuted from home, and when necessary a family member drove her to the office. After epilepsy surgery, which ended the seizures but affected some of her short-term memory, she was reassigned to a job where she could write legal briefs but no longer deliver oral arguments, which are now beyond her capabilities.Labby received all these concessions because they are guaranteed to her by the Americans with Disabilities Act (ADA). She also got them because she knew the law and demanded that her employer follow it to the letter, which is something she suggests all people with epilepsy must do. “You have to learn to put your feet in the ground and protect yourself,” Labby says.
How the ADA Works
The ADA outlaws employers from discriminating against a qualified individual on the basis of disability. In other words, you cannot be denied a job or fired from one because you have epilepsy. In addition, an employer of more than 15 people is required to “make reasonable accommodation for a known disability unless to do so would impose an undue burden on the employer,” according to the Epilepsy Foundation. Exact accommodations required are unique to each person with epilepsy, but some examples from the Epilepsy Foundation include:
- A person experiencing memory problems can ask that assignments be given in writing instead of orally.
- Someone at risk of breakthrough seizures may need flexible hours or a short break at work if a seizure occurs.
“Employers need to understand that epilepsy is a disease deserving of an accommodation,” Labby says. “I was vocal about what I was capable of doing and what I was not capable of doing. My employer, at times, needed to be reminded of it, but did prove to be understanding.”
Discrimination Despite the ADA
Despite the number of people with epilepsy — 3 million Americans are affected — Labby’s case is too often the exception rather than the rule, say epilepsy experts. Employment discrimination against people with epilepsy is so rampant that neurologist Eduardo Locatelli, MD, advises his patients to keep their status secret unless disclosure is absolutely necessary.
“The issue of stigma is still very big,” says Dr. Locatelli, medical director of the Florida Neurosciene Center in Fort Lauderdale, Fla. “So what I say is, don’t announce that you have epilepsy. But from a safety perspective, if you’ve got a friend at work or you have a good relationship with your manager explain that if there is a seizure this is what you do.
”Should You Tell?
The ADA protects you if you want to keep your epilepsy a secret. But Labby found that by telling her co-workers, she was able to dispel many of the myths surrounding epilepsy.
“When you have epilepsy, people are very inquisitive about it,” Labby says. “It’s a disease that they just don’t understand. You feel like, on some level, you need to defend it.”
But by defending it, you are also proving that disability is not synonymous with inability. And that can help not just you but those with epilepsy who come after you as well.