As a child, Gena's classmates gave her a hard time for being short, for wearing glasses, and for being "an epileptic." She didn't fully understand her seizures or what they meant, but she quickly learned that being "an epileptic" made her the subject of ridicule.
Gena's family, on the other hand, never called her that. Instead, they talked about her seizures. When she had a bad day with epilepsy, they would simply say, "Gena is seizuring today" much like they might say, "Gena is running." Gena thinks of it as a "friendly, open wording that we created for ourselves."
As an adult, Gena made a conscious decision not to call herself an epileptic because it reduces her identity to her neurological disorder. She explains, "I have a right hand, I'm a vegetarian, I have an interest in social economics, I have epilepsy. I think of epilepsy as very much a part of my identity. It is just as fundamental to who I am and my outlook on life as those other attributes."
The noun "epileptic" is hurtful; Gena's experience isn't unique. For example, when London Ontario resident Stephen hears someone call him "an epileptic", he feels like they're insulting him and saying he's stupid. Susan, Michelle, and the other members of Stephen's social club at Epilepsy Support Centre have similar interpretations of the word.
Susan prefers to describe herself as a person with epilepsy. She explains, "I don't think of epilepsy as a name to call me. It's a part of me and my life. It's something that I live with, but it's not me." Michelle agrees, "Epilepsy is something that I have, not something that I am."
There are people who call themselves "epileptic." It could be a reclamation of the word or it could simply be the word that they and their family have always used. Many people with epilepsy may not have thought much about the language used to describe them and their neurological disorder.
Several members of epilepsy agencies in London and Waterloo-Wellington hadn't thought about it. Once they started talking about it, however, they realized that they have a clear preference for "person with epilepsy" over "an epileptic." This phrasing is commonly called Person-First Language because it emphasizes the person rather than the disability or health issue. We see similar language used to describe people with diabetes, autism, and developmental delays.
There is compelling evidence that this shift in language usage has a significant impact on the stigma of epilepsy. Researchers Paula T. Fernandes, Nelson F. de Barros, and Li M. Li split study participants into two groups. Group A answered questions about "people with epilepsy" while Group B answered the same questions about "epileptics." Even though the two groups answered the same questions with the same information, Group A thought "people with epilepsy" had less difficulty with school or work and were rejected by society less than Group B did with "epileptics." More people in Group B admitted to being prejudiced against "epileptics" than Group A did against "people with epilepsy."
This suggests that simply shifting our language from "epileptic" to "person with epilepsy" can alter the way others think about those living with epilepsy. Employers, colleagues, teachers, and peers may think of their friends differently if we all start referring to "people with epilepsy" instead of "epileptics." People with epilepsy may face less discrimination at work or school, they may be less marginalized by their peers, and they may be able to start fully participating in our communities without the stigma of their disorder hanging over their heads.
These three small words can have a profound impact on the lives of people with seizure disorders. They might face less prejudice and they'll no longer have to confront a word that's often used as a playground weapon. If making a minor shift in the language you use would reduce stigma and shame surrounding epilepsy, why not make the change?
By Nikki Porter, PhD. Nikki Porter is the Project Manager for Epilepsy Ontario's From Isolation to Inclusion project.