My name is Dorothy Crowell and I live in Meredith, New Hampshire.
I submit this testimony as an advocate of the Epilepsy Foundation New England.
Epilepsy is a neurological condition which causes frequent seizures. I have lived with epilepsy for as long as I can remember as I was diagnosed when I was four years old. Throughout my life I have been on over twenty different medications and have had multiple surgeries. I have now been seizure free for over ten years after having my right temporal lobe removed in 2015.
My epilepsy has had a significant impact on both mine and my family’s life. This includes limitations due to my seizure triggers, having to cancel plans at the last minute, and more. However, one place it has always had an impact on me is in school. Being a neurological disorder, epilepsy has a significant impact on how I learn, especially how fast. I have always needed an IEP from grade school through college. This gives me things like extra time on tests and quizzes. However, even with these exceptions, sometimes it is not enough. When I was at Plymouth State University, I would be allowed double the time other students got on exams and with how slow I read, especially with missing part of my brain I still had times I would barely finish. I like to have a chance to double check my work which I almost NEVER got to do. This bill would educate schools that sometimes people need even more exceptions than other students even if it seems unfair to people. The person they were being unfair to was me.
Thanks to the advocacy of my family, I am one of few living with epilepsy who had a more supportive and understanding community through grade school. Though my grand-mal seizures were uncontrolled all the way through high school, thanks to my family’s voices, my school knew what to do if something happened. Starting in kindergarten my parents always met with my teachers, the nurse, and even talked to my classmates to make sure they knew what to do if I had a seizure. In elementary school, my dad came into my classroom, read a story to my classmates, and answered any questions. When we were in kindergarten the main question they were asking was if epilepsy was contagious. But then by second or third grade they were asking “what can we do to help?” They knew enough about me, knew the disorder, and some of them had seen me have a seizure, so they wanted to do something. By the time we were in middle and high school, they were doing things like bringing my backpack to the nurse on their way to their next class if I had gone down to fight off an aura. Others even more.
Though my family advocated for me, this is something we wouldn’t have had to do if this bill was in place. There are also some people who don’t have people to advocate for them like I had. For instance, I know someone who didn’t and they ended up getting abused when they had a seizure in school one day. To this day twelve years later they are still traumatized from this situation.
As a person with epilepsy, I urge you to pass Bill 433 to make schools in New Hampshire seizure safe. All other people with epilepsy deserve a similar experience to what I had in grade school and do not deserve to be traumatized. This bill will make sure people with epilepsy are in a safe environment and getting the education they deserve.