Story Time – Explaining Your Epilepsy

(I may have already posted on this – let me know ☺️)

It can be really annoying (depressing, tiring, and more) to repeat yourself over and over to people. Someone walks into a meeting late – oh, we were just talking about… A minute later, someone else comes in – we were just discussing… And over and over. It wears you down, and you start feeling like you spend all your time talking, and none doing anything.

A black neon sign reading "Blah blah blah".
Like that.

This is what a lot of disability advocates feel like. They have to constantly explain what it feels like to be disabled. They have to explain that they do want to be around you, but they don’t have energy. That they’d love to go to the bar, but noise and lighting can trigger seizures. And they can’t explain it just once. Almost no one who doesn’t have a disability understands, it seems.

So what do you do? A lot of people with disabilities will recommend blog posts, or YouTube videos, or books, by people who understand the problem and explain it well. “I’m too tired to explain,” the reasoning goes, “so I’ll let someone else do it for me.”

I totally get that. And sometimes it’s the only thing you can do. But I wonder whether maybe we’re missing an opportunity here? As a former teacher, I understand the importance of face-to-face interaction. Blog posts and articles and YouTube videos are good – but people respond to personal stories. They’ll react to your stories more than to words from strangers, people who aren’t there with them.

I’m not telling you to harm yourself by pushing yourself farther than you have energy for. Please don’t do that. But if someone asks you, and you have the energy and time, do please remember this: You can make more impact on someone by telling them your story, in person, in your own words, than they’ll get out of reading anything about disability, no matter how well written.

Just some thoughts. Spread the word. Do what you can.

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