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People With “Invisible Disabilities” Fight For Understanding

invisible disabilitySome disabilities are less visible than others. Some are completely apparent, particularly if the person relies on a wheelchair or other obvious device. But many others — referred to as “invisible” disabilities — are not apparent to the general public. People who live with these encounter a number of challenges on the job and in their daily lives.

It’s difficult to determine the number of Americans with invisible disabilities, but estimates put this group well into the millions. Disabilities may range from diabetes and lupus to bipolar disorder. There is a wide range in the severity of these conditions; moreover, we know less than we could simply because many fear being stigmatized by their illness or condition, and therefore are reluctant to talk about it.

Yet in employment disability discrimination suits filed with the Equal Employment Opportunity Commission over the past 10 years, the most commonly cited conditions were invisible, according to research published in Cornell University’s Employment and Disability Institute.

The case of 33-year-old Carly Medosch, a young professional in Washington, D.C. area, is a helpful example. Carly doesn’t outwardly look sick. But she has been battling Crohn’s disease, an inflammatory bowel condition, since the age of 14. The condition is so sever that she has sometimes laid on the bathroom floor wondering “Am I going to die?” More recently, she received a diagnosis for fibromyalgia, which causes full-body chronic pain and intense fatigue.

Appearing healthy and “normal” comes with distinct advantages: as Carly explains, she is able to “pass” as a healthy, average person, “which is great and definitely helps ease my everyday life — especially in interactions with strangers, getting your foot in the door in a situation like a job interview.”

Yet there is a dark underside to this invisibility as well, since it keeps many people (employers, co-workers, or just people on the street) from understanding and therefore supporting those with undetected disabilities.

Wayne Connell founded the Invisible Disabilities Association after his wife was diagnosed with Lyme disease and multiple sclerosis. As he explains, “We’d park in disabled parking and she didn’t use a wheelchair or a cane, and so people would always give us dirty looks and scream at us. When they see someone in a wheelchair, OK, they get that they’re in a wheelchair. But what if they have chronic pain, what if they have PTSD — anything from cancer to peripheral neuropathy to autism?”

Medosch has been put through the same ordeal when using handicapped parking tabs. Moreover, she commonly faces challenges getting her employers to provide basic disability accommodations.

Employment attorneys and Workers Compensation lawyers like Joyce Smithey point out that unfortunately, this treatment is not uncommon. When workers with invisible disabilities request basic accommodations, employers sometimes turn them down saying “We don’t do that as a policy.”

“And that’s a problem,” Smithey says. “Because that person is not asking to partake of a benefit that’s offered in a policy; that person is asking for an accommodation they’re entitled to under the law.”

When a disability can’t be easily and immediately seen, the public — whether on the job, at school or out shopping —sometimes assumes that it simply doesn’t exists, suggesting that individuals suffering from a given condition are just trying to get special treatment.

Medosch reports that she’s not more comfortable being upfront about her disability since she knows her current job offers adequate protection. But not everyone is so lucky. Medosch hopes that discussing her experience with others will increase understanding; yet she admits that invisible disabilities can be hard to wrap our heads around — especially when so many people who suffer from them look just like those who don’t.

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Emery Reddy