Be prepared: We might never be treated as equals.
We are portrayed in the media as "pokemon"-watching mentally challenged kids who have a fit every time a police car passes us. Im sick and tired of it. Sure it's true someof us have photosensitive seizures , but people still don't care to give us a break. every popular movie has a 5 minute sequence with strobe variation lighting , a good example is batman 2 where batman beats up bad guys in strobe lighting. The olympic logo for the 2012 london games flashes so much it has caused many seizures. People want licence to amuse themselves at our expense and knowingly do nothing o even worse avoid making things better for us. In india , the marriage laws were defined as " marriage is legal as long as both parties are free from epilepsy.... and mentl illness at the time of marriage". it took a 12 year struggle to remove epilepsy from that list. I'm sick and tired of people pitying us or parodying us. It's time to be treated as an equal
Epilepsy is a very uncomfortable subject for many people in this country, including people with this illness. We will never have solidarity amongst people with epilepsy, because too many of us want to many different things. Look, I applaud any organization that wants to raise money to find a cure for epilepsy, but at the same time, I think they are being silly, and missing the big picture. What we need is this country to understand what epilepsy is, and how it effects others. Once we do a better job in this regard, then it might be easier for many of us. This could only take a year or two, then we can focus on finding some cure.
But, the people that are in charge blew it big time these last two years, and I wonder why they are not held accountable. Two of the biggest stories that have hit the American media machine in years epilepsy had something to do with, and it would have been nice for one of these "experts" that are supposed to be looking out for our best interests to have used the opportunity.
I am of course talking about the Don Imus fiasco, and the Natalie Holloway case in Aruba. For those that don't know or remember, two months after Imus said his comment, and was fired, Al Roker made a really bad epilepsy joke, a comment that was a lot a heck of a lot worse than Imus's. How come nobody made a peep about this? ( And I don't want to hear they tried, because this had nothing to do about money. This had to do about making a point, but I guess they felt it wasn't a big deal)
Then, last February, we find out that there was a good chance that Natalie Holloway, the girl that went missing in Aruba that caused many news pundits to call for a boycott of ARuba, had a seizure, and that kid Joran did not know what to do about it. Am I the only one that sees the potential in this story to help us out?
If anyone watched Joran's "confession" aired the day after the Superbowl, there is that part where he describes Natalie having a seizure. His description proves he did not make it up, and he admitted that he was scared. Couldn't the people that are paid the big bucks to help us out use that as an opportunity to explain that if students and the public were properly educated about epilepsy and taught not to fear us explain how this girl's live might have been saved?
You see, I have a direct connection to that case, more so than anybody. It is not just the fact that I was Santa in Aruba last year, and feel that the boycott is silly at best. No, it is the fact that I met Joran last December and had some drinks with him. If I was to see him again, I was going to ask him to help me out and become a spokesperson for epilepsy awareness ( I figured the whole world listened to him, and that would have been a good thing) Little did I know at the time that a seizure would play a big part in him being famous, but I still intend to use that story.
But until the powers that be decides that awareness is more important than money for themselves, these people we expect to lead us and help us will never rock the boat. That is a shame, and I can't want to capsize the thing over.