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.
