Disability Invisibility: advocacy in the public eye

(Book Kara Alexa Sadprasid\The Aquinian)
(Book Kara Alexa Sadprasid\The Aquinian)

When you finally take the plunge and start calling yourself an “illness advocate” (or something of the like), you’re automatically fighting an uphill battle. After all, there’s a reason we’re called “sick,” and it has nothing to do with our sick dance moves. We’re not normal, so we’re given the challenge of putting forth a point of view people might not understand.

I’ll say that being an advocate is still relatively new to me. I was writing a very low-key blog as little as three years ago, but it wasn’t until this time last year I swan-dove into the world of social media activism. Well, I didn’t really do a swan dive. Belly-flop is probably the more accurate term.

I can admit that social media is very, very weird. I’m not a capital-C’Cool Girl’ like the Jennifer Lawrences and Emma Stones who just “don’t get” social media. I love social media. I live on social media.

But yeah, it’s totally weird. There’s the good weird, like how I write for a Crohn’s and colitis magazine despite having never met my editor or co-writers in person.

Then there’s the bad weird, like how it fuels my latent narcissism or how it very often makes me feel inadequate. For a lot of people, social media is simply the ultra-filtered “highlight reel.” Once you add your personal life into the mix, all your dirty, shit-stained laundry is up for public view.

“Well,” you might be saying. “Emma, did you ever think about not posting?”

Yes. Hundreds of times and for hundreds of reasons. Like I said, advocacy is an uphill battle and for so many years, it was a battle I wasn’t up to fighting.

But then something changed. I got sick of disappearing and lying about where I was. I got sick of leaving class in pain and coming up with some cutesy excuse (is there a cute way to say “I’m bleeding out of my ass?”).

Because for all its weirdness and FOMO-inducing narcissism, social media can be a pretty great tool. But I’m also going to go full Uncle Ben and say that with great power comes great responsibility.

(Book Kara Alexa Sadprasid\The Aquinian)
(Book Kara Alexa Sadprasid\The Aquinian)

I have Crohn’s and I’m mad as hell about it. I’m mad at how Crohn’s is so often kept out of the public consciousness, even though rates of diagnosis are growing at a frightening pace. I’m mad about how when it is talked about, the conversation is plagued by myths and all too common misconceptions. I’m mad that I’m seen as an unclean, undesirable person because of what I had to do to stay alive.

When you’re mad, you’ve got to make noise. But when you make noise, you’ve got to be ready for what comes after. Not everyone will agree with your noise, and they’ll make their own. And remember, they’re totally allowed to do that.

Maybe someday none of it will be noise at all. It’ll just be your average conversation.

4 COMMENTS

  1. Hi Emma,
    I like you enjoy social media – without it I wouldn’t be be able to keep in touch with your mum or follow your progress and read your articles. I’m sure you’re managing your Crohn’s disease and I know you’ve had your struggles over the years. But what impresses me most is how you’re tackling it head on and using social media to try and make Crohn’s a talking point and not something to be ashamed of admitting you have. I know a few fellow sufferers, including somebody who had reconstructive surgery and understand your battles.
    I also recognize your talent and passion for writing – our oldest daughter is a freelance writer living in Edinburgh. She started having her articles published on websites while she was still at at York University and it’s now her full time career. I wish you good luck with your writing, your Crohn’s awareness drive and most of all for you to stay as healthy as possible. Good luck with everything. Amanda

  2. Well said Emma! Thank you for being mad as hell, for being brave and for speaking on behalf of others who are not ready to share their stories yet.

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