By Joyce Bender
President and CEO of Bender Consulting Services.
Image of Joyce BenderI 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 in the headlights". In cartoons, the "balloon" above the characters tell us what they are really thinking. I know the words in their "balloon" 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 in the workplace or with friends, due to the stigma attached. I know many people with epilepsy, depression, diabetes, and multiple sclerosis who do not disclose their disability to anyone at work, due to fear of discrimination; they also do not tell any of their friends. I will use epilepsy as the example for all people with hidden disabilities, as we all face the barrier of stigma.
In the United States today, approximately 3 million Americans are people with epilepsy and many people do not disclose it. The reason they do not disclose is their fear of being treated differently. With epilepsy comes this automatic fear of reprisal not only in the workplace, but also in the family and in relationships. People with other hidden disabilities face the same trauma associated with stigma.
For many years of my life, I had on-going "fainting spells" that were misdiagnosed by my doctor as a "woman problem"; the doctor 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 the intermission I walked out to the concession stand to get a Diet Coke and I had a tonic-clonic seizure and hit the floor so hard, 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. I had a miraculous recovery. While in intensive care, I heard the word "epilepsy" for the first time. Yes, those prior "fainting spells" were really seizures and I was a woman with epilepsy. I almost lost my life, due to the doctor's misdiagnosis. Now, like millions and millions of other Americans, I was a person with a hidden disability.
Today, I own a company, Bender Consulting Services, Inc. (www.benderconsult.com), that employs Americans with disabilities. I also have a radio show, Disability Matters with Joyce Bender, on www.voiceamerica.com. That seizure at the movie theater really changed my life.
Many people with epilepsy are not as lucky as I am and do not have control of their seizures as I do today. I take 450 milligrams of Dilantin every day of my life and 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.
Why do many Americans not disclose they have epilepsy and what is the reason many parents 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 means you have or are believed to have some attribute that is depreciative in nature. This means that you are not just inferior, but also a negative. One reason for this stigma being attached to people with epilepsy is fear of being around a person who has or may have a seizure. This leads to the inability to develop relationships and often to finding employment. For this reason, even if a person is controlled by medication or a device like the vagus nerve stimulator from Cyberonics, they do not want to disclose to anyone that they are a person with epilepsy - they want to be treated "normal."
The Epilepsy Foundation has worked with epileptologists, psychiatrists, and nurses to combat stigma and have 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 clearly 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 (if you do not know - it is not contagious) 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 the "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 is the author of the Americans with Disabilities Act and is a former Congressman. He is not only a successful business man, he is a Civil Rights hero. He is to this day, 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.
You must always remember that you have the same power to impact others. You have people watching you. Do not be ashamed, ever, of your disability whether it is hidden or not. Disability is just part of who you are. We can work together to break down barriers due to stigma, if we stop hiding.
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, you can, even with a hidden disability, make a difference if you come "out of the shadows".
Joyce Bender is President and CEO of Bender Consulting Services. Please direct questions for Joyce to firstname.lastname@example.org.