My Joy Is My Freedom

On the revolutionary act of choosing happiness as a Black, disabled woman.

keah brown
Katelyn Shufelt Photography/Design by Mia Feitel

Embracing my own joy now means that I didn’t always. Hope is my favorite word, but I didn’t always have it. Unfortunately, we live in a society that assumes joy is impossible for disabled people, associating disability only with sadness and shame. So my joy—the joy of professional and personal wins, of pop culture and books, of expressing platonic love out loud—is revolutionary in a body like mine. I say this without hyperbole, though fully aware that the thought may confuse, frighten, or anger people. As a Black woman with cerebral palsy, I know what it is like to encounter all three.

Last year, in 2019, I released my debut book, an essay collection called The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me. While the reception was overwhelmingly positive, I did receive e-mails and read reviews where readers were confused, frightened, or angry—and sometimes all three. But my book is about a journey to joy. My goal is for readers to leave my book hopeful for a future of inclusion, representation, equal rights, and joy. I wondered why this positive message would elicit such negative reactions, and I could come up with only one reason: These readers, both disabled and not, reacted defensively because they’re not centered in my story—because I’m calling for inclusion that decenters whiteness. This realization has only made me work harder, smarter, and with more eagerness to tell more of my own stories and to champion the stories of people of color—especially those of Black women, who aren’t truly and properly visible or respected in or outside of our communities.

The face of the disability community is very white. People don’t often think of people of color or of LGBTQ+ people when they think of us. Instead, they think of cis white male wheelchair users who hate themselves, because that is so often the way pop culture depicts us. I’m not a cis heterosexual white male wheelchair user, so in pop culture, I don’t exist. That’s not okay because it’s not reality. I exist, I am a real person behind these words, and I deserve to be seen.

"I live as unapologetically as I can each day—for myself, of course, but also for those…who will walk through the doors I hope to break down."

When I created #DisabledAndCute in 2017, I did so to capture a moment, a moment of trust in myself to keep choosing joy every single day. The hashtag was for me, first, and for my Black disabled joy. I wanted to celebrate how I finally felt that, in this Black and disabled body, I, too, deserved joy. The hashtag went viral and then global by the end of week two. When disabled people took to it to share their stories and journeys, I was floored and honored. There were naysayers who hated that I used the word cute and accused me of making inspiration porn, but the good responses outweighed the bad. So I live as unapologetically as I can each day—for myself, of course, but also for those who will come up after me, who will walk through the doors I hope to break down.

Living unapologetically looks like retweeting praise for my work or my book on Twitter. Calling out ableism, racism, and homophobia in marginalized communities through my writing. It means that I’ve literally stopped apologizing for the space I take up on stages or in airports—especially in airports, since I use their wheelchairs to get from gate to gate to avoid body pain—or anywhere else I exist. I’ve stopped saying sorry to the people around me as the airport attendant pushes me to my gate. I feel liberated.

I may not find joy every day. Some days will just be hard, and I will simply exist, and that’s okay, too. No one should have to be happy all the time—no one can be, with the ways in which life throws curveballs at us. On those days, it’s important not to mourn the lack of joy but to remember how it feels, to remember that to feel at all is one of the greatest gifts we have in life. When that doesn’t work, we can remind ourselves that the absence of joy isn’t permanent; it’s just the way life works sometimes. The reality of disability and joy means accepting that not every day is good but every day has openings for small pockets of joy. On the days I can’t get out of bed because my body pain is too great (a reality of my cerebral palsy), I write in the notes app on my phone or spend the day reading books or watching romantic comedies on the Hallmark Channel. These days and others that I carve out for self-care are necessary for my well-being.

Disability Visibility: First-Person Stories from the Twenty-First Century
amazon.com
$11.99

For most of my life, hope, like joy, seemed to elude me—it felt impossible in a body like mine. I was once a very self-deprecating and angry person who scoffed at the idea of happiness and believed that I would die before I ever saw a day where I felt excited at the prospect of being alive. I realized I was wrong on a snowy day in 2016 just after Christmas, when I vowed to try to hold on to and nurture the feeling of joy, even if skeptically. I championed the act of effort and patience with myself by forcing myself to reroute negative thoughts with positive ones. Instead of saying what I hated about myself, I spoke aloud what I liked about myself.

In doing this, hope and joy became precious, sacred, a singular and collective journey. I shared my journey with the people who loved me before I ever thought I could. I shared my journey with the world because I wanted them all to know that who I am becoming is only possible because of who I was, and that is what makes it so beautiful. My joy is my freedom—it allows me to live my life as I see fit. I won’t leave this earth without the world knowing that I chose to live a life that made me happy, made me think, made me whole. I won’t leave this earth without the world knowing that I chose to live.


From Disability Visibility: First-Person Stories from the Twenty-First Century edited by Alice Wong, to be published on June 30, 2020 by Vintage Books, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC. Compilation copyright (c) 2019 by Alice Wong.

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