I was diagnosed with multiple sclerosis more than a decade ago now, and I live with it the same way I live with my sobriety: day by day. While my disease course has remained fairly stable since starting an infusion called Ocrevus in 2019, I experience persistent symptoms from past relapses, almost all of them invisible to the naked eye. One of them is a shooting pain to my face called trigeminal neuralgia (as intense as it is mercifully brief, a lightning bolt of nerve pain). One of them is spasticity in my hamstrings and calf muscles, which make it painful for me to stand still (I can walk for miles, and swiftly, but standing still for even a minute is profoundly uncomfortable for me). One of them is the dreaded MS hug, which attacks my intercostal muscles and tightens around my torso like an unforgiving corset, making it impossible to sit, talk, or breathe evenly. Nonetheless, if you saw me in the forest, out hiking with my dog, you’d pass by me without noticing anything amiss. Invisible symptoms make it so usually the only one who truly knows what’s happening within my body is me. I never know when the next relapse will happen, and how it will affect my body, and I’m still learning how to live with the uncertainty (and certainty) of disease progression. Despite having had MS for a decade, I still hesitate to advocate for myself (say, to ask for a chair, or express a need to lie down), or wince when I do.
We live in an ableist society, one that denies the experience of disability both visible and invisible, ableism that attempts to tell people they are lesser when their lives are rich, multifaceted, and worthy. Ableism is pervasive even as so many of us live with disability. According to the ADA National Network and the CDC, respectively, 54 million Americans and 1 in 4 adults (27%) have a significant disability, and globally the World Health Organization suggests 1.3 billion people live with disability.
I’m reminded of Seattle novelist Nicola Griffith and her slim, power-packed novel So Lucky, the best (only?) novel I’ve ever read about the monster of ableism. In an interview with The Millions, Griffith, who also has MS, a self-described “Queer Cripple with a PhD,” says, “I wanted to get [So Lucky] in front of people because we need to break out of the ableist narrative. This is the first book I’ve ever written that’s about an issue….This is about disability. It’s about this sense of internalized ableism. About not feeling less. If I had to pick one thing, that’s what the book’s about. It’s about figuring out that you’ve believed a pack of lies all your life.”
It’s time to shatter the isolating pervasiveness of ableism. People with disabilities deserve to hear: You are not less, you are whole. Here are a range of books that can help subvert the ableist narrative and give voice and belonging to those with disabilities.
So Lucky: A Novel by Nicola Griffith
Quietly Hostile: Essays by Samantha Irby
What Doesn’t Kill You: A Life with Chronic Illness—Lessons from a Body in Revolt by Tessa Miller
Disability Visibility: First-Person Stories From the Twenty-First Century edited by Alice Wong
Tomorrow and Tomorrow and Tomorrow: A Novel by Gabrielle Zevin
Disability Pride: Dispatches from the a Post-ADA World by Ben Mattlin
Haben: The Deafblind Woman Who Conquered Harvard Law by Haben Girma
Leg: The Story of a Limb and the Boy Who Grew from It by Greg Marshall (buy from Auntie’s Bookstore)
Sorrowland: A Novel by Rivers Solomon
Sitting Pretty: The View from My Ordinary, Resilient, Disabled Body by Rebekah Taussig
Demystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily Ladau
One, Two, Three: A Novel by Laurie Frankel
A Quick and Easy Guide to Sex and Disability by A. Andrews
The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me by Keah Brown (order from Auntie’s Bookstore)
The Disability Experience: Working Toward Belonging by Hannalora Leavitt, illustrations by Belle Wuthrich