Why I’m rethinking my use of social media as a disability advocate
Using these platforms shouldn't feel like an obligation, a columnist argues
In the stillness of my room, a voice says to me, “You should quit social media.”
It’s not the first time I’ve heard this voice. But it’s the first I’ve given it any sort of consideration. It’s 4 a.m. and my brain is a pinball machine, bouncing between thoughts. I’m just loopy enough to sit with the thought instead of pushing it away.
What if I quit social media?
I circle the possibility like a dog on the hunt. It’s alluring to me. It always is, but especially right now, having spent the past three months in a frenzy trying to finish my book. I don’t want to post on social media. I don’t want to write a painfully long caption to go with my painstakingly edited Instagram Reel. I want to enjoy social media again. I want it to feel like a privilege, not an obligation.
The trap of obligation
I’ve always had a weird relationship with social media. But it came to a head when I was tapped to participate in SMA My Way, a community initiative created in collaboration with the biotech company Genentech. Suddenly, I was surrounded by pillars of the SMA community, people with thousands of followers and prolific careers. I felt unworthy in comparison. It wasn’t anything anyone did, to be clear. It was all me — me and my brain and the knots it makes out of nothing.
Longtime readers of this column will know I didn’t mean to get into disability advocacy. It just sort of happened. What started as a side gig became a full-blown career.
Most disability advocates seemed best known for posting on social media, so I threw myself into the deep end of Instagram. I chose a niche. I identified my content pillars. I even learned how to use hashtags. I set an audacious goal of posting Reels twice a week. I had a few hits, but for the most part, my time on Instagram was marked by suffering. I hated every minute of it.
Still, I persevered. I was an advocate now, and advocates were active on social media. I just had to suck it up.
Social media was never fun for me. (Unless we’re talking Tumblr, but that’s a story for another time.) It was somehow even less fun now that I was obligated to use it. I can put a spin on most anything, but not when it comes to writing long-winded, “educational” Instagram captions. It made me want to lobotomize myself with a butter knife.
The price of authenticity
I had all sorts of reasons for staying on social media. It was my job. It would benefit my writing career someday. It was the right thing to do — a way to “give back” to the community.
But I wasn’t making much of a difference. Maybe a few people found my content right when they needed to, but I think that, for the most part, my posts were lost in the great wide interweb. Which is fine! That’s the nature of social media. But, at least for me, the fulfillment I derived from Instagram wasn’t worth the effort.
I’m a writer. I can playact at different professions, but at the end of the day, the written word is my weapon of choice. Instagram Reels are more likely to go viral, but they’re also less authentic to me as a person. I was so obsessed with doing the “right” thing that I ended up doing the wrong thing. No wonder it felt like a square-peg, round-hole scenario.
There’s a pressure put on disabled folks — by other people and ourselves — to make our lives into art. Whatever we do has to be made into educational, bite-size snippets to be posted on social media. And while I understand the reasoning, I would argue our lives are already art. We advocate for the disability community just by existing. Every time we go out in public or ask for accommodations, we show the world what it’s like to live with a disease like SMA. We enact change, whether we mean to or not.
So I’m trying a new approach to social media — one that doesn’t involve me trying so hard, forcing myself into uncomfortable shapes just to feel like I’m advocating the “right” way. I don’t exactly know what that looks like yet, but I’m excited to find out.
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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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