Growing up, I had several cousins who had epilepsy. At the time, we did not have the knowledge or language about disability that I have today. When one of my cousins experienced a seizure, we would commonly say that they were “having an episode of epilepsy.” Sometimes stressful situations seemed to trigger these episodes, and other times a sudden loud noise seemed to trigger a reaction. As a family, we tried to help in the ways we understood at the time. We might try to calm the person, cover their eyes, or stay close to them until the episode passed. I also remember people believing that something should be placed in the person’s mouth to keep them from swallowing their tongue. (Recognizing and Refuting the Myth of Tongue Swallowing During a Seizure, 2020) Looking back, I understand that some of those practices reflected what our family believed was helpful at the time, even though our understanding of appropriate seizure first aid was limited.
As I learn about person-first language, I can also look back differently at the language my family used. We generally talked about our relatives as people who “had epilepsy” rather than allowing epilepsy to completely define who they were. Today, I understand this more formally as person-first language, rather than saying a person with epilepsy or an epileptic. What stands out to me is that our relatives were always family first. The condition was something they experienced, but it was not everything they were. My social work education has helped me understand why language matters and why respecting the terminology an individual prefers is part of recognizing that person’s dignity, identity, and self-determination. It has also taught me that caring intentions should be paired with accurate knowledge, because what people believe is helpful can change as we learn better, safer practices. (First Aid for Seizures, 2024)