Special Article

Talk About It

By Joyce Bender [view bio]
President and CEO of Bender Consulting Services.

On March 28, 2009, we had the 3rd Annual National Walk for the Epilepsy Foundation in Washington, DC with over 8,900 walkers. The point of the walk is to raise funds and awareness for the national Epilepsy Foundation and help us end the stigma attached to epilepsy.

The National Epilepsy Foundation has a wonderful walk chair, Greg Grunberg, an actor from the hit NBC TV show Heroes. His son , Jake lives with epilepsy. Greg is committed to help end the stigma attached to many people with epilepsy , who are hiding in secrecy. When Greg asked various doctors why there is such a stigma attached to epilepsy, they told him it is because no one wants to talk about it. It is for that reason that Greg came up with the idea of a campaign for the National Epilepsy Foundation called Talk About It.

Greg has successfully recruited other TV stars from NBC to participate in the Talk About It campaign. You can learn more by going to www.TalkAboutIt.org and www.epilepsyfoundation.org . It is exciting to see so many stars getting involved in this advocacy movement for people with epilepsy. It is time to come out of the shadows...

Today, people with epilepsy and other hidden disabilities need to Talk About It and not hide. We must come out of the shadows and realize that people should never, ever, be ashamed of a disability. We are a group of people who are a part of a disability culture like any other minority group; we are not a group of sick people who need to hide.

I have a special message to any parents of children with epilepsy. If you tell your children not to talk about having epilepsy , you are hurting them more than you can ever imagine. When you tell them not to talk about it, you are telling them there is something wrong with them or that they should be ashamed. Don't do it. Your child may already be dealing with bullies at school and you are only making the words of the bully come true. Epilepsy is not something to be ashamed of or hide. You must empower your child not make them hide.

For adults living with epilepsy like me, why should we hide it? The only time I tell people to not disclose a disability is during the interview process before a job offer is extended; that is what the Americans with Disabilities Act is all about. I would give the same advice to anyone with a hidden disability when interviewing for a position.

When you accept your disability, such as epilepsy, you can help so many other people. People like Alan Faneca of the New York Jets, formerly of the Pittsburgh Steelers, is my hero. Alan has epilepsy and so does his young daughter; he talks about it. He did attend the National Walk in DC and he talked about it in front of almost 9,000 people. His great advocacy has caused Jason Snelling of the Atlanta Falcons to also talk about his epilepsy.

At the National Epilepsy Foundation, we are asking all of you to have a dinner or breakfast at your home and talk about epilepsy. If anyone wants to make a donation, you can give it to your local epilepsy chapter. If you want to know more about this, go to www.epilepsyfoundation .org and you can find out how to participate and who your local contact would be.

The Honorable Tony Coelho, author of the Americans with Disabilities Act, and my mentor, told me once, “When you get a chance to take the podium, speak up.” I have never stopped speaking up and I never will.

Talk about it.

Joyce Bender is President and CEO of Bender Consulting Services. Please direct questions for Joyce to info@disability-marketing.com.