As a Disabled Person, My Anger and Fear Are Holy
A reminder that life is complex, and our struggles are legitimate
Sometimes it feels like I’m living two separate lives.
I’m very intentional when it comes to social media. My Instagram account is a carefully curated feed of Reels, cat pictures, and pastel-colored infographics. This is my cottagecore life. I wear dresses, listen to classical music, and wish I was Rapunzel. My artistic, creative side complements this aspect of my identity, which is why I lean on it so heavily.
Then there’s what my friend and fellow columnist Sherry Toh calls my “feral” side. This is the wild and chaotic part of me, most represented by my Twitter account. It encompasses my love of “Star Wars,” my passion for social justice, and my interest in horror. It’s the version of me who pairs a leather jacket with a floral skirt and plays video games until 1 a.m.
In some ways, these lives are at odds. I write dark, visceral stories, with messy protagonists and unbalanced relational dynamics. The marketer in me knows that to sell this part of my identity, I need to play the part — dress in muted colors, for example, or post hauntingly atmospheric Reels.
But that’s just not me. As important as my writing is, it doesn’t eclipse my love of all things whimsical. I want to live in an ivy-twined tower. I want to cosplay as a Disney princess and pretend — if only for a minute — that my life is a Studio Ghibli movie.
I want to wear pink and be known for my lush, spooky stories.
I want to change the world for the better while cultivating softness.
In terms of Marvel shows, “She-Hulk: Attorney at Law” is pretty low on my to-watch list. But there’s a line from the trailer that resonated deeply with me. The Incredible Hulk — otherwise known as Bruce Banner — is teaching his cousin, Jennifer Walters, how to transform into her newly discovered Hulk form.
“The transformations are triggered by anger and fear,” Bruce tells his cousin.
Jennifer scoffs. “Those are like the baseline of any woman just existing.”
Sherry claims that few people know the truth of me. They see my babydoll dress, pink scrunchie, and heart-shaped sunglasses and assume they know it all. But there are things they don’t see — things I hide from everyone but my loved ones.
The ugly parts of my mental illness. How I withdraw in moments of struggle, unable to function in the real world.
The rage that accompanies life with SMA. How sensitive I am to ableist comments. How quick I am to write people off, unwilling to educate them, to appeal to my better angels.
When Sherry encounters yet another obstacle in her fight for the treatment Evrysdi (risdiplam), I joke about committing arson. But I’m not joking, not really. Years ago, when I first started playing Dungeons & Dragons, my character was a paladin of death with an excessive interest in setting things on fire. Over time, that aspect of her personality bled into my own.
I’m not actually advocating arson. But I am indulging in the anger I’m all too quick to swallow.
I think this is true for a lot of disabled folks. We endure everything from discrimination to crimes against humanity. We spend a majority of our lives trying to survive. We are barred from engaging in society, purportedly because we are incapable of advocating for ourselves. Then when we do advocate for ourselves, we are accused of faking, of wasting resources.
Of course we’re angry. Of course we’re scared. We live at the mercy of a cruel and unjust society, with little hope of liberation.
My friends have taught me that my anger is holy. When I tell them about a particularly frustrating encounter, they respond with outrage, offended on my behalf. This is their way of validating me. Of reminding me that my struggles are legitimate.
Fear and anger are the baseline of chronically ill folks. And that’s OK. We don’t have to hide it, to pretend it away, to perform pleasantries for the sake of those who would oppress us.
Like Mary Oliver says in “Wild Geese,” “You do not have to be good./ You do not have to walk on your knees/ for a hundred miles through the desert repenting./ You only have to let the soft animal of your body/ love what it loves.”
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.