How I can Personally Increase Epilepsy Education in my Community -
Jaclyn Moneypenny
I have lived with epilepsy all my life, and for most of my life, especially in my childhood, I have noticed a need for the public to be more aware of what epilepsy is. To most people epilepsy means someone isn't quite right. They associate the disorder with smelling burnt toast or disabled people falling to the ground, shaking uncontrollably. As a child I was encouraged to keep the details of my disorder to myself, and when other children found out that I had epilepsy they would discriminate against me because they didn't understand what was different about me. Although I'm lucky enough to have my seizures controlled by medication, it was difficult as a child to hide the truth when school was interrupted by regular doctor appointments, bandages from blood tests were usually noticeable, and each teacher had their questions about my own disorder.
I never had a hard time accepting my disorder as a child. My family informed me more and more as I got older about what epilepsy was, or why I got the "tickles", which is how my parents explained it to me when I was young. I realize that I am fortunate to be controlled by medication that many people with epilepsy have a lot worse time with the disorder, and I believe that knowing this from an early age has helped me to accept and be very open about my disorder.
Experiencing epilepsy from such a young age made it easier for me to talk about my disorder with my peers, and it also made me more passionate about helping others with epilepsy and developmental disabilities. I think the most crucial time to educate people about epilepsy in during childhood. Instead of raising a generation of children who do not know better than to think it is ok to laugh at seizures or consider them a joke, it would be ideal to instill the value that joking about seizures is as insensitive as laughing at someone with Downs Syndrome. This is something I have always firmly believed and I strived to educate adults and children so they too will adopt my belief that epilepsy is not a laughing matter.
Starting at a young age I volunteered with the special education class in my elementary school. Many of the children had developmental delays that included having seizures and I took it upon myself to let the other volunteers in the special education classroom and children throughout the school know what the signs or auras of the seizures were and what to do if a child had a seizure.
As I got older the children I grew up with became more aware that I had epilepsy and were curious to know more about my disorder. I often had kids come up to me and ask me about epilepsy and I eventually became comfortable talking about it with the students in my classes. I believe that it's crucial to stress that people with epilepsy can live normal lives despite limitations and it shouldn't be tolerated that anyone treat them differently. I have always taught this to my peers and I know that many people whom I have grown up with are much more understanding about epilepsy.
As I graduated from elementary school and started high school the questions I was asked about epilepsy got more advanced and kids were more understanding about it. Throughout the science and health classes I openly discussed seizures and I did an independent study on epilepsy in a biology course to educate my class about the many aspects of the disorder. I wanted everyone to know that epilepsy is more complicated than someone falling down and shaking. I wanted to inform them about what they could do to help someone having a seizure, especially recovery positions, what causes epilepsy so that I could banish possible stereotypes and most importantly that there are various forms of seizures, that we don't all smell burnt toast and drop to the floor!
Now that I am in the Educational Assistant for Special Needs Support Program at Niagara College I find myself in two different positions. I talk about epilepsy a lot with fellow classmates because it is considered a developmental disorder in many of the textbooks we study from. My teachers like to have an inside perspective to help my classmates understand and feel more empathetic for clients they may work for who have epilepsy. It can be tough to hear everyone swap stories about how they once saw someone have a seizure because that is my life. But in the end I'm glad that so many people care enough to learn about the disorder and want to help people who also have to live with epilepsy.
The other position I am in, is as a student educational assistant working at elementary schools. Again I see children who don't quite understand what epilepsy is, or why the students in the special education class sometimes have seizures, but I am glad to be there to educate them and try to raise that generation of more compassionate children to believe epilepsy is no laughing matter. I am glad to see that today's children appear to be more understanding about people with developmental delays and disorders.
As far as what I can do to increase epilepsy awareness in my community, I have chosen a career where I will dedicate my life to aiding people with developmental disabilities such as epilepsy and educate the people around them so that they may understand and be more compassionate. I also believe that I am a great example to people, that I am a form of education, especially to younger people with epilepsy. I have lived with epilepsy from the age of six months, I have overcome being discriminated against as a young child, I have dealt with the fact that this is something that I will live with for the rest of my life and am a stronger person for having epilepsy but not letting epilepsy control me. If the time is taken to educate people about epilepsy they can realize that having a disorder doesn't make you less successful or normal than anyone else. Because I know all these things I have been able to educate people around me about epilepsy and I will continue to do so as long as I have someone to educate.
Jaclyn Moneypenny was one of the 2004 Epilepsy Scholarship Winners.
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