Epilepsy: The "annoying" child

Yesterday I visited a friend whose 10-year-old child has epilepsy. He (I’ll call him Percy) is such a sweet and bright child, who unfortunately has to tip toe through life to avoid triggers for his condition. He has had many epileptic attacks at school, which has affected his academic performance and his social life, judging from what he told me.

I was just making small talk and asked him if he was having fun at school. Here is how our conversation went:

Me:  So are you having fun at school

Percy:  Not so much.

Me: Why?

Percy: I don’t have many people that like to be my friends.

Me: Why?

Percy: They all think I’m annoying.

Me: Do you enjoy annoying people? What exactly do you do to annoy them?

Percy: I don’t know what I do to annoy them. I don’t want to annoy them, I want to make friends. Sometimes I make funny sounds to make them laugh, and they say I’m annoying. Then sometimes I keep quiet, and they still say I’m annoying. I think I have an annoying personality.

That conversation broke my heart. I am convinced that the other kids are just afraid or uncomfortable with his epileptic fits at school and they now avoid being around him.   There is so much that needs to be done to educate our children about disabilities and how they should handle themselves around people considered to be “different”. Now Percy goes through life thinking he has an annoying personality, yet his failure to make friends has nothing to do with his personality at all. He’s just a regular kid but happens to have epilepsy, which ranks highly among stigmatized conditions.

I remember when I grew up, there was a boy called Chemadota, who has since passed away. Loosely translated, his name meant “the one covered with ashes”. That wasn’t even his real name, but he acquired it because he was epileptic. He would fall on the ground and have serious fits and people were scared of him, even though they still found time to laugh at his condition. By the time the fits passed, he would be covered in dust from head to toe, hence the name Chemadota. The severity of his epilepsy resulted in him being developmentally challenged, which people found hilarious.  It did not help that he was from a very disadvantaged background and was always barefooted and in tattered clothes. He was taunted everywhere he went, but was just a harmless boy with epilepsy.

I remember people telling me that people with epilepsy would foam at the mouth during a fit, and if you came into contact with the saliva, you’d automatically catch the epilepsy too.  I also heard the ridiculous assertion that if you looked in the middle of the footprint of a person with epilepsy there would be the paw print of a dog in the middle. People alleged epilepsy was demonic and once you fell into the fire, it would be untreatable. I don’t know where people got all that, but the message was clear: We were to stay as far away as possible from Chemadota or anyone with epilepsy. All that happened more than 20 years ago. It’s painful to note that nothing much has really changed in terms of raising awareness for epilepsy and other disabilities. 
When I was pregnant with my 10-year-old, I used to interact with many people with disabilities. I was advised that whenever I saw a person with a disability I was to discreetly spit in my dress to avoid having a baby with a disability. I never followed that advice, and had a child with autism, but I know it had nothing to do with not spitting. You spit when you have nausea, when there's a bad smell around you and you're revolted. You don't spit because someone has a disability.
I was telling my friends that I wish schools would just have about 30 minutes per week to discuss disabilities, prepare children for them. There are so many disabilities that children need to know about. They are growing, they will be parents who will probably also have children with disabilities. They will want to know how to treat them and they will want them to be treated well out there in the big, bad world full of uninformed people.  My friend, Celi, who’s a staunch advocate for disability awareness said: “…it does not come naturally for kids to shun others. It is learned behaviour.” I totally agree. Discriminatory kids grow up to be discriminatory adults who will also raise their own discriminatory kids. We will never see the end of this is something drastic is not done.