Epilepsy at the intersection of disability, gender, and culture: A duoethnography

Epilepsy is a neurodevelopmental disorder that affects millions of adults and children. Several different types of seizures, ranging from generalized which affect both sides of the brain to focal seizures that are rooted in one location of the brain. In addition to the physical impact of epilepsy, there are many emotional and identity consequences of living with epilepsy. An area that is not yet explored is the impact of epilepsy on the lives of women of color. In this paper, we fill this gap by exploring the experiences of two women of color who have had epilepsy beginning in early childhood through motherhood. One of the women is Mexican-American and an early career faculty in social work. The other identifies as a Chinese immigrant doctoral student in disability studies. Together, these stories bring to the literature voices that have not been actively engaged by epilepsy research or academia. We use a duoethnographic approach in this work given that this method provides an opportunity to explore identity and intersectionality and juxtapose our narratives surrounding epilepsy. By applying disability critical race theory (DisCrit) to our narratives, we identified how fluctuating epileptic symptoms, gender, and culture, interact with the layers of our epileptic identities. Furthermore, we discuss how our experiences with epilepsy exposes the lack of accommodative efforts in both the healthcare and education systems for individuals with invisible neurodevelopmental disabilities. This duoethnography has important implications for engaging youth with epilepsy and other invisible disabilities. By showcasing our journey of “coming to terms” with epilepsy, our dialog provides insights into how to support youth in building a positive disability identity. Our experiences in academia set up a basis to discuss accommodations for students with epilepsy and other invisible disabilities.