My name is Ethan and although I do not have a disability I live with someone who does. My wife Andrea has epilepsy.
Andrea was diagnosed with epilepsy when she was nineteen years old. To begin with, epilepsy prevented her from working and interfered with her lifestyle. She was having so many seizures and taking so much medication that it was difficult for her to do everyday things. For example, it was difficult for her to take a walk down the street to get a cup of coffee without getting confused, disoriented or even lost.
Andrea and I got together six years ago when she was twenty-seven years old. At that time, she was receiving disability benefits that barely covered her cost of living. Fortunately, her seizures had become more controlled and she was able to reduce the amount of medication she was taking. With her medication reduced, she found it easier to communicate, read, exercise and live a healthy lifestyle. She used public transportation and was remarkably independent. Soon after we met, Andrea began attending classes at SAIT. She was determined to re-enter the workforce and build a career for herself. I was eager to support her in that journey.
Epilepsy affects Andrea’s life in many ways. She has to pay close attention to her lifestyle because things like stress, diet, alcohol, lack of sleep and lack of exercise make Andrea more vulnerable to seizures. Inevitably, Andrea’s epilepsy affects my life too. I have to pay close attention to the same lifestyle choices she does, and when Andrea has seizures I am often her first line of support. I support her on a physical level by helping to keep her safe when she has a seizure. More importantly, I support her emotionally. Seizures are tiring for Andrea and they affect her mental wellbeing and self-esteem. It’s hard for her to be confident when at any moment she might lose consciousness, say or do something strange or embarrassing.
Andrea achieved outstanding grades and completed a diploma in Business Administration at SAIT. She began looking for work. The job climate in Calgary was difficult, but she landed a job with a small company in the public sector. It was an extremely exciting milestone for her, but unfortunately the people Andrea worked with reacted fearfully to her epilepsy. Rather than seeing her strengths and trying to understand her condition, Andrea’s coworkers bullied her and made her feel inadequate. It was extremely hard on her and hard on me too. I couldn’t believe that anyone would treat another person the way Andrea’s coworkers treated her. Even more confounding was that Andrea’s coworkers couldn’t see her strengths and talents. To me those talents seemed obvious.
Andrea quit her job and returned to school. She earned a degree in Business Administration from Mount Royal University and received honors with distinction throughout her academic career. She minored in Social Innovation and Entrepreneurship where she developed a passion for social justice and advocacy. In particular, she is an advocate for the disability community.
Within months of completing her degree at Mount Royal, Andrea landed a position with a small engineering firm in Calgary where she is currently working as a Project Administrator. She loves her work, is appreciated at her job and her employer and co-workers celebrate her talents. Fortunately, they seek to understand her epilepsy rather than reacting to it with fear. I’m grateful there are people in the business world who know that too.
Andrea’s latest advocacy project is to organize a Disability Pride Parade in Calgary. Similar parades have been held in New York, Vancouver and England. The point of the parade is to celebrate disability, build an inclusive community and promote education, empathy and understanding.
Disability Pride is important for many reasons. To me, it’s a celebration of belonging and an opportunity to build capacity in our community. The parade is not just about people with disabilities, but also about people like me who are affected indirectly by disabilities. It’s for anyone who feels that inclusion and diversity are important. I will be there, marching proudly with my wife. I hope you’ll join us!
If you would like to share your story please contact the Disability Pride team at: Disabilityprideab@gmail.com
Your story can be in any form you like! Poem, lesson, painting, essay, song, picture; anything that shares your connection to disability.
Thanks so much!!