From the Archives: Summer 2005 Issue of Lupus Now Magazine
Working It Out
With a disease like lupus, negotiating the workplace can become a full-time job
by Emily Wojcik
Laney Robertson has dealt with the effects of lupus in the workplace since she was diagnosed more than 10 years ago. At one job, the 30-year-old was nearly demoted when her boss discovered her condition. "I told him, ‘You can’t do that! I’m protected by the ADA [Americans with Disabilities Act],’" she says. "He said he wasn’t concerned about laws and acts -- he was just trying to run a business."
Robertson’s case isn’t unusual -- anyone who works while disabled can tell you that often the hardest part is dealing with insensitive bosses or coworkers. In 2003, the Equal Employment Opportunity Commission received more than 15,000 disability discrimination complaints. With a disability such as lupus, in which symptoms are often difficult to see and understand, confrontations can be laced with disbelief or outright hostility. So when does curiosity become discrimination? And how can you protect your professional relationships without sacrificing your health?
Know Your Rights
The best defense is a good offense, and the best offense is to know your rights. Passed in 1990, the ADA states that it’s illegal for an employer to fire or refuse to hire qualified people with disabilities. More important, a company must provide “reasonable accommodation,” as long as the cost isn’t seriously detrimental to the company’s bottom line.
Peter Blanck, Ph.D, director of the Law, Health Policy & Disability Center at the University of Iowa in Iowa City, says the important thing is to ask for help. “The ADA requires that employers go through the process of accommodation with qualified employees,” he says. Blanck’s coworkers, director of research Helen Schartz and associate director James Schmeling, agree. They recently released a report on corporate attitudinal bias that emphasizes the positive effects of inclusion in the office.
“Each situation is based on the needs of the individual and the resources of the company,” Schartz says. “But it is ultimately good business sense to provide accommodations.” While the out-of-pocket costs might sometimes seem high, the company often saves money by increasing productivity and avoiding the re-hiring process.
"The ADA isn’t ‘preferential treatment,’" Schmeling explains. “It’s a way of letting capable employees continue to contribute.” He adds that many companies willingly offer help for people without disabilities. “Flex time, return-to-work programs, maternity leave -- all are different forms of accommodation.”
Dealing with Difficulty
But what if your difficulty is with your coworkers and supervisors? Speaker and author Maureen Pratt struggled with this when her lupus began flaring on the job. “It was difficult to keep up with the workload, and I had lots of absences,” she says. Though her diagnosis was in some ways a relief, knowing what was wrong brought its own difficulties. After becoming too sick to work full time, Pratt began writing. She’s published two books about lupus and offers the following tips for dealing with the changes:
- Communicate. “For the most part, people with lupus don’t look sick,” Pratt points out. “Coworkers might have misgivings, and it’s important to take the time to educate them.” Use an analogy they’ll understand: Someone with a weak heart, for example, might have no visible symptoms but would still require help.
- Get educated. "The employee handbook often has instructions about whom to speak with about your disability,” Pratt says. “Many problems can be avoided if employees follow company procedure from the beginning.”
- Learn to say no. “Take care of yourself first,” Pratt says. “Don’t try to force work when you feel sick.” After all, you are a greater asset when you’re healthy.
- Take a deep breath. When facing an insensitive coworker, step back and breathe. “The physicality of relaxing can help you recognize when someone is being discriminatory and when they just don’t understand.”
- Be realistic. Sometimes, says Pratt, having a disability means recognizing your limitations. “If you try to do a job you can no longer physically do, you’ll create tension, while destroying your health.” It can be devastating to leave a career, she says. But as Pratt can attest, sometimes leaving is the best thing: “Whole new worlds open up. I never would have thought about writing a book, but I’m publishing my third. It’s an exciting thing!”
Laney Robertson is also proof that things can get better. In her new position as a business analyst, she has found her new employer to be an understanding partner. “They have given me a laptop and the freedom to work from home when I need to,” she says. “I am really happy in my situation now.”
Resources
- The Job Accommodation Network (www.jan.wvu.edu) is sponsored by the Department of Labor and offers FAQs, resources for employees and employers, and even a page for those with lupus.
- The Law, Health Policy & Disability Center (www.disability.law.uiowa.edu) offers up-to-the-minute analyses of ADA law, corporate attitudinal bias, and other issues.