I know I’ve briefly written about perceptions on disabilities already but this past week of at the Epilepsy Awareness Day @ Disneyland sparked a few more thoughts on the subject.
Boy, we had a great time! Disneyland is always fun! We ate yummy treats, we saw characters, rode fun rides and spent time with our family. The Disneyland day was almost, just like any other day at Disneyland. I was hoping that we would get to meet families who had encountered the same hardships that we had, that we would bond and exchange stories. This, didn’t happen. Fault of the organizers? Not sure, but there really wasn’t any attempt to do any of this from any party involved.
The expo the day prior was incredible. The vendors were fantastic, very welcoming and so approachable. They really did an incredible job spreading the word about epilepsy through the speakers, vendors and “freebies.”
Now back to the EADDL. A third day should be added. A day for families to meet each other and engage in conversation beyond a quick hello or smile. Families who’ve gone through and are going through this journey don’t want to spend their day at Disneyland talking about their sad times or hardships but rather having a fun time. I would suggest that they have a family play time, meet up at a local Anaheim park and play. Have a parent meet and greet. As bonded as these events try to make everyone I didn’t feel bonded at all. Disneyland, surprisingly didn’t accommodate much more than a regular day. They didn’t reduce the flashing lights they sell, or even make their staff aware of epilepsy awareness day. Many cast members didn’t know that the day was being celebrated when I spoke to them and that was a little shocking. Of course, everyone was mostly cheerful and as expected at Disneyland.
Awareness events seem to be for the people who aren’t at the event. They are for the pictures taken, the word to get out and not the moms, dads, grandmothers, grandfathers, aunts, uncles, sisters, cousins and friends who’ve gone through the thick of it with the family member who’s battling or battled. Such is evident in how these events are set up. For example, one of the first speakers was about SUDEP. Now if, one was to look at this from the perspective of any of those family members listed above, who, in their right mind would want to sit and listen to a doctor talk about “sudden unexpected death in epilepsy?” Do they not know that this is the biggest fear we all hold? Losing our loved one? Just one example, I know, but it’s how they chose to kick off the event.
As I walked around the expo for a few minutes to myself (thank you Auntie E & Papa) I was able to see the vendors and speak to a few people personally. It was really a great experience and I would highly recommend it to all interested in learning more about ways to help a family member in the fight to end epilepsy. But, I was surprised that within the epilepsy community, those vendors at the event that were chosen to represent the “community” didn’t know what Infantile Spasms was. They either stared at me strangely, thought I was in the wrong place since I didn’t say seizure, I said spasm, or straight out asked, what’s that?
As a parent of a child who has been victim to the damages of IS, I took it upon myself to study and learn other types of epilepsy. I wanted to know about absence seizures, petite mal, grand mal, tonic clonic, myoclonic, drop and various other types. I also wanted to learn about conditions that caused such types of epilepsy and have even branched into meeting and studying different gene variations or abnormalities that families have faced. It feels like the right thing to do. Being a part of this community means so much to me. I don’t want to be a part of it, I don’t want anyone to have to be. But, since we are, we are going to try the best we can to gather the most knowledge.
While at the EADDL we were going to take a group shot. The photographer asked us to move to the side for another family with a more visible disability. My heart and prayers obviously go out to that family we were moved for, but, in moving us, the photographer took a step back in raising awareness. When he asked us to move, he believed that we didn’t represent the “face” of disability. In moving us, he went against what raising awareness truly is. Not all the faces of epilepsy look the same. And, frankly, some of the most serious forms of epilepsy are hidden behind the faces of beautiful “normal” looking children.
I want to take this opportunity to remind everyone that disability doesn’t always have a face. This is both a blessing and sometimes a hindrance, as those of our children with non visual disabilities are often treated differently. When people look at Ailbe they see a typical child, I think, and consequently when she acts out, they judge a little differently than those with a physical disability. See Ailbe does have a physical disability, although it’s not visual to the outside, her brain, the most vital part of your body, has a flaw. Whether, the flaw will continue to be a hidden hurdle through her entire life or whether she will completely breakthrough the barriers, I do not know. But, it’s something that I hope and pray for daily.
My goal is to bring a face to hidden hurdles. The challenges and struggles behind our children need a voice too.