8 04 2008

Enabling the Disabled

Casting Off the Stigma of Epilepsy

Joyce Bender

April 7th 2008

The Cutting Edge News


I have a great way to quiet a room – start talking about my epilepsy to a group of strangers. There is always a look of surprise and shock when they discover that I am a person with epilepsy. I can read the “balloon” above the heads of those who suddenly look like deer caught in headlights. In cartoons, the “balloons” above the characters tell us what they are really thinking. I know the words in their “balloons” include: “I thought you were fine” or “I never knew she had this terrible problem” or “Oh, no, epilepsy, I do not want to talk to you about it.”

Most people with hidden disabilities do not discuss their disabilities, due to the stigma attached. In the United States today, approximately three million Americans are people with epilepsy and many do not disclose it. The reason they do not is their fear of being treated differently. With epilepsy comes this automatic fear of reprisal and discrimination not only in the workplace, but also in the family and in relationships. People with other hidden disabilities such as depression, diabetes, and multiple sclerosis face the same trauma associated with stigma.

For many years of my life, I had on-going “fainting spells” that were misdiagnosed as a “woman problem”  by a doctor who never tested me for epilepsy. Epilepsy is frequently misdiagnosed by a primary care physician because there are so many types of symptoms associated with multiple types of seizures. A person can have a tonic-clonic seizure, an absence seizure, or a complex partial seizure, just to name a few.

In 1985, I went with my husband on a Sunday evening to see the movie “Amadeus.” At intermission I walked out to the concession stand to get a Diet Coke and had a tonic-clonic seizure, hitting the floor so hard that I fractured my skull, broke the bones in my inner ear, and had an intra-cranial brain hemorrhage. A tonic-clonic seizure is the correct name for a grand mal seizure. (We do not use the name grand mal, as it means the “Big Bad,” and that does not help to eliminate stigma.)

I was rushed in an ambulance to Mercy Hospital in Pittsburgh, PA and had life-saving brain surgery that evening. While I had a miraculous recovery, it was in intensive care that I heard the word “epilepsy” for the first time. Those prior fainting spells were really seizures. As a woman with epilepsy, I had almost lost my life due to a doctor’s misdiagnosis. Like millions of other Americans, I became a person with a hidden disability.

Many people with epilepsy are not as lucky as I am and do not have control of their seizures as I do today. Daily medication has been effective, and I have had only a few seizures since my accident. Some children and adults can have over 100 seizures per day. One seizure per year is too many.

Today, I own a company that employs Americans with disabilities. I also have a radio show, “Disability Matters with Joyce Bender.” That seizure in the movie theater changed my life.

Why is it that so many Americans do not disclose they have epilepsy? What is the reason parents often tell their children not to tell anyone that they have epilepsy or other hidden disabilities? The answer is stigma.

J. Crocker in the Handbook of Social Psychology states that a stigma is an attribute that is depreciative in nature. This means that you are not just inferior, but also a negative. One reason this stigma is attached to people with epilepsy is others’ fear of being around a person who has or may have a seizure. This leads to an inability to develop relationships or to find employment. For this reason—the desire to be treated “normal”—even if someone is controlled by medication or a device like the vagus nerve stimulator, they do not want to disclose to anyone that they are a person with epilepsy.

The Epilepsy Foundation has worked with epileptologists, psychiatrists, and nurses to combat stigma and has conducted surveys with teenagers about epilepsy and stigma in the United States. Epilepsy and Behavior published an article, revised in July 2002, “Epilepsy familiarity, knowledge, and perceptions of stigma: report from a survey in the general population” that conducted a survey with teenagers, done by Joan Austin, Patricia Osborne, and Jessica Deering.
The results demonstrated how powerful and negative stigma can be for those with epilepsy. For example, less than a third of the adolescents surveyed responded that they would date a person with epilepsy. In addition, 51% were sure that epilepsy was contagious (it is not) and one-fourth were sure it was a form of mental illness.

If your child has epilepsy, the worst thing you can do is tell them not to tell anyone they have epilepsy. Why? You are perpetuating the stigma. As Dr. Marty Morrel states, you are placing a “Scarlet E” on your child when you tell your child not to talk about epilepsy; you are really telling them you are ashamed of them and that they are inferior.

One of the greatest people I know has dealt with stigma from his parents – he survived and is a champion today. Tony Coelho, a former Congressman, is the author of the Americans with Disabilities Act. He is not only a successful business man, he is a Civil Rights hero. He is one of the most respected and quoted political analysts in the United States. He is also a person with epilepsy. I met Tony when he was the Chairman of the President’s Committee on Employment of People with Disabilities during the Clinton Administration. I saw this great man who was not afraid to discuss his epilepsy. He impacted my life.

Tony Coelho is one man with a hidden disability, who speaks to everyone about his epilepsy and who helped free millions of Americans with disabilities. As they say at the Epilepsy Foundation, if you are just one person, even with a hidden disability, you can make a difference if you come “out of the shadows.”

Coelho’s message applies not just to those with epilepsy but to all with disabilities and the families that support them. They must always remember that even the most disabled has the power to impact others. The disabled must be encouraged to understand that people are watching. To them I say: never be ashamed, ever, of your disability whether it is hidden or not. Disability is just part of who you are. Working together,  society can break down barriers due to the stigma of disabilties but only if the disabled stop hiding.

Joyce Bender is President and CEO of Bender Consulting Services and a frequent author on disability topics.




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