Learn About Epilepsy

Labeling is Disabling

"I'm not an epileptic! I'm a person with epilepsy! And don't you ever forget it!" These words were flung at the Epilepsy Foundation's newly hired executive director, David Blackwell, 20 years ago. And he's never forgotten it. You can almost see him flinch when someone today calls a person an epileptic.

This is not a matter of being "politically correct." People are individuals - whether you have a disability or not - and people don't like labels. Labels stereotype and are limiting. The board member who taught Blackwell this lesson explained that "epilepsy is what I have, not what I am." Instead of epileptic, say "person with epilepsy" or "child with epilepsy." This places the focus on the whole person, not on just one characteristic. As an adjective, "epileptic" is o.k. such as "anti-epileptic medication."

Avoiding stereotyping and showing a bit of sensitivity demonstrates common respect. Other inappropriate terms or useages may include fit, control, disease. "Fit" is commonly used to describe seizures in Canada and other English-speaking countries of the Commonwealth. In the U.S., the connotation of fit is mental derangement or loss of emotional control or symptoms of rabies. "Seizure" is preferred to "fit."

Seizures are controlled with medication; persons with epilepsy are not. And lastly, epilepsy is a disorder rather than a disease. It is a symptom of an underlying cause(s) that can affect the brain. Not all seizures are epilepsy and many people prefer to call epilepsy a seizure disorder, avoiding the stigma that may be associated with that term. It is important to know that the diagnosis is "epilepsy," however, since a great deal more information will be found in the encyclopedia under "epilepsy" than under "seizure disorder."

It may be a difficult habit to break but these simple tips will demonstrate a caring attitude.