What Disability Pride Means to Me

Jenna Elyse Johnson is a children’s author, teacher and bookseller with a particular passion for writing stories that highlight disability joy. Having grown up with cerebral palsy, and now living with other chronic illnesses, Jenna enjoys creating stories that feature all types of characters. Her new picture book, Every Body Move!, is an original singalong celebrating kids with disabilities and the tools that help them access our world.

When I talk about disability joy or disability pride, I sometimes get confused looks from others. “You are happy to be disabled?” someone might ask me. Or “So, you’re never upset about being disabled or chronically ill?” The answer is…well, it’s complicated!

I want to preface this by saying that I cannot possibly speak for the entire disability community. I am speaking from my personal experience, though I know many people within the disability community share my opinions. Still, everyone is entitled to their own views and beliefs.

As a child, I hated being disabled. I felt so “othered.” I was embarrassed by my mobility aids and desperately wanted to hide or be invisible. Looking back now, I wish I could give little Jenna a hug and tell her that she was beautiful, just the way she was.

Now, as a grown up, I’ve learned to embrace my identity as a disabled woman. I am not afraid of the word “disabled” or “disability” and wish that the general public was more comfortable with it, as well. I’m not a fan of euphemisms like “differently-abled” or “special needs” or “handi-capable.” Everyone has needs, regardless of ability. Mine shouldn’t be special. And disability isn’t scary. It’s human. To me, disability pride is about rejecting my old ableist beliefs and embracing my true disabled self.

A large part of why and how I found comfort in my identity as a disabled woman was finding the disability community. Finding more people like me. The disability community is the largest minority. And, anyone can become disabled at any time. That’s not meant to scare anyone, it’s just meant to bring awareness to the fact that disability does not discriminate.

So, thinking about little Jenna and all the fear and embarrassment she had, I wanted to reframe how I viewed mobility tools. Yes, I was embarrassed by them. But my tools were also incredibly helpful. My leg braces helped me walk. My arm brace helped me with my range of motion. I now have a service dog, and he’s my favorite mobility tool of all!

I wrote Every Body Move! to highlight how awesome mobility tools are and to celebrate all types of movement. Every Body Move! is a celebration of kids with disabilities and the tools they use to access their world. If I had read a book like this as a child, I would have felt less “othered,” less alone. I wanted to literally let disabled kids take up space on the page. And I’m so happy with how this book turned out. Even better that it’s a song, too!

Now, am I happy every single day about my disability? Or chronic illness? No! Do I sometimes wish my health journey was simpler? Yes! Am I a burden because of my disability? NO! Sometimes I must work REALLY hard to remember this. But I am worthy, valid, and deserving of the space I take up in this world. Just the way I am. So, I created a book where disabled kids are worthy, valid, and deserving of the space they take up on the page. Just the way they are. I wanted to physically see that representation. For little Jenna.

While I don’t believe my disability defines me, I do believe it has helped shape me into who I am today. A strong, resilient, woman with a passion for finding joy in the mundane, and who loves to talk about books, dogs, and sweet treats. Is every day easy? No. But do I have disability pride? Absolutely! And I will continue to write books featuring disability joy as long as I can. I take my job of writing for children very seriously. It is an honor.

About the Author

About the Book