Founding Executive Director of I-CREATE YOUTH Jessica (Jess) Kim interviewed Harper McKenzie, a writer and disability activist.
Harper McKenzie is a disabled writer, storyteller, and recovering disability justice advocate from Dallas, Texas. She holds a BA in Creative Writing and Disability Studies from Emerson College, where she co-founded Access: Student Disability Union. She works full-time as a novelist, creator, and literary research assistant, and has been writing, speaking, and sharing her experiences for over ten years. She is the co-creator and co-host of The Disabled Standard, a podcast about what it’s really like to be disabled and reject the abled standard. Her blog, Write It Disabled, explores her experiences as a disabled writer and her journey towards authentic disabled joy.
I-CREATE YOUTH is an organization that empowers, educates, and connects disabled youth through language in its various forms, from poetry to programming. We teach creative writing workshops, host fellowship and summer research programs, and curate monthly exhibitions featuring disabled changemakers, all in an effort to connect disabled youth and communicate their stories with the world. Learn more about us at icreateyouth.com.
Jessica Kim: Can you share your story of being disabled?
Harper McKenzie: At age eight, I was diagnosed with dyslexia, which answered a lot of questions for me and my family but confused my teachers. I was a well-behaved student in the talented and gifted program; they refused to believe I was disabled, and I was denied accommodations and support by my school district. It was a privilege to switch to a private school that specialized in learning disabilities in third grade, but it was a double-edged sword. I got the language therapy I needed but was raised to distance myself from my disabilities (which they called differences). My teachers—and peers—still failed to see what was truly going on with me. I had always been an anxious and particular kid, but in middle school, my social challenges skyrocketed, and in high school, my sensory processing divergences grew so invasive I could barely function. No one noticed. I had to do my own research, and at around age 17, I figured out I was autistic. I soon sought an official diagnosis so I could receive college accommodations.
After nearly two decades of not understanding myself and not receiving the full level of support or acceptance I needed, I was finally able to come into my disability identity at college. I learned about disability history and culture, followed disabled activists and creators online, brought disability into my class work, and eventually designed my own major, Creative Writing and Disability Studies. I also joined student government as Accessibility Senator and co-founded Access: Student Disability Union, my college’s first and only disabled student group. Through Access, I grew deeply as a person and developed an amazing community of disabled friends.
I spent most of my college years learning how to live as the autistic person I am—learning how to unmask, stim, ask for what I need, overcome my internalized ableism, and integrate all my disabilities into my life. It was also during this time my physical health started to decline, which was only accelerated by the upheaval of the covid-19 pandemic. I’m still struggling to receive a diagnosis to explain my pain and new functional limitations, and still unearthing trauma related to my late diagnosis and people’s denial of my disabilities. My disability identity is ever evolving, and my disability story grows with me every day. That is where disability pride lies for me: knowing my disabilities are a dynamic part of my beautiful rollercoaster of a human experience.
JK: How does your passion for writing and storytelling intersect with your identity as a disabled person?
HM: I’ve been a writer and a storyteller for as long as I can remember, and long before I knew I was disabled, these identities were intertwined. As a dyslexic, writing and reading were always just out of reach. I loved them but was sold the message they weren’t for me. I’ve had periods of time where I engaged with them and others where I pushed them away. Most often, I try to engage but am unable to—less because of language struggles and more because of trauma.
But I always come back to stories one way or another. Writing has always been my place to wrestle with my questions and challenges, and as someone who grew up in the dark to her own disabled experience, my writing has always been about disability. My work explores themes of authenticity, exclusion and isolation, survival in an oppressive world, and the power of joy and community.
As I’ve grown to understand and own my disabled identity, these themes became more pronounced and disability rooted itself as the explicit central force of my writing. I’ve reached the point in my journey where I refuse to be gatekept from my passions and I refuse to leave disability out of my writing.
I know the power of representation because I’ve watched it transform lives, but also because I’ve felt the repercussions of never having it. If I’d been empowered to read as ferociously as my heart desired, would I have found the representation I needed to understand myself? Maybe, but maybe not. We need more disabled stories on the shelves, on the big and small screens, in video games and textbooks and where every you can imagine. So, I fight to write the disabled stories I can write, and work to empower and uplift others to do the same.
JK: You’ve created your own major (“Creative Writing and Disability Studies”) at Emerson College, co-founded the college’s pioneering organization for disabled students, and authored The Access Advocacy Project. What got you inspired to work on these incredible projects?
HM: First, thank you for speaking so highly of Access and our projects. I have all the love and pride in the world for our community and what we’ve been able to do together. That is essentially the short answer to why I started and kept going with these projects: community.
When I started at Emerson, I was deeply alone. I knew there were other disabled students, but we had no way of finding each other. It took a few years and a lot of personal growth, but eventually, I got connected with another disabled student who had the same experience and same goal: build a place at Emerson by and for disabled students so we could finally find our community and make sure no one else had to go through what we went through.
It’s similar to my experience with writing and why I created my major. Yes, it was healing for me to take classes about disability, turn in short stories with disabled characters, and have the space to be the disabled writer I’d never got to be. But knowing my healing could help others heal and avoid the wounds I couldn’t—that is what got me through the days when everything felt impossible. When my internalized ableism raged and I couldn’t fight to follow my dreams for myself, I did it for my community.
Sometimes, the scales have tipped too far. People might be surprised to know some of my darkest days were the days I threw myself into The Access Advocacy Project. I stand by the AAP and have zero regrets, but I was only able to advocate so fiercely for others because I didn’t believe I was worth advocating for. I was in one of those periods where I couldn’t engage with writing, reading, and that world the way I wanted. My internalized ableism and trauma wouldn’t stop telling me I had no sustainable future as a writer. So instead of pushing against those forces, I pushed against systemic ableism and the injustices my friends faced.
It took a long time to realize my advocacy had become a trauma response, and even longer to develop—and in some ways redevelop—a motivation that equally prioritized my own healing and the impact I can make on those around me. When I’m at my best, the things I need to do for my own healing are the same things that help me make a positive impact.
JK: You’re also the co-host of the podcast, The Disabled Standard. Tell me about this initiative and how it impacts you.
HM: The Disabled Standard is actually a prime example of one of these things! This spring, my friend and fellow Access alum Shruti Rajkumar and I turned our dream of starting a podcast into a reality. Our friendship grew out of wonderfully fruitful discussions about disability, intersectionality, and our experiences living in an ableist, oppressive world. We wanted to share these conversations to offer up an authentic, unfiltered look at disability, but also because we are both writers and storytellers who get great joy from creating. Shruti served as Access president after I graduated, and so we both had a lot of room to fall back in love with our passions and our healing. On the show, we talk about everything from foundational disability topics to current events to our personal experiences, and the ways these all intersect. We just wrapped up our first season and are excited to start work on season two.
My favorite thing about the podcast is the title. The abled standard is a phrase most people in disabled spaces have probably heard. It refers to the ways our society was built for non-disabled people, and how we are all expected to meet these standards regardless of our disability status. The disabled standard is the rejection of these standards and the radical opposite of the idea that everyone should follow the same paths in the same way. There is not one disabled standard—one way to be disabled. The disabled standard is each person living out their most authentic lives together in community. As a disabled person, following the disabled standard means standing firm in your disabled identity and not forcing yourself into abled societies boxes at the cost of your joy and individuality. It’s saying you won’t temper yourself, your life, or your culture to fit into something that wasn’t built for you. It’s refusing to be quiet about it and knowing you’re not the problem; if abled people can’t handle your disabled standard, that’s on them.
JK: Last but not least, do you have any advice for disabled youth?
HM: Put simply: keep going and follow the disabled standard. (And I don’t mean follow our podcast, but definitely feel free!)
Disability is a journey, and wherever you are on that journey is more than okay, it’s beautiful. But you have to keep going. Take that however you will—keep pursuing your dreams and working towards your goals, keep advocating for your needs and demanding the respect you deserve, keep fighting for your accommodations and diagnoses, keep being authentically you and simply keep being. You matter. Your voice matters. Your joy matters. We need you in our community and in our world, and we need you as you. So, screw the abled standard and whatever other standards and norms go against who you are, and fight to live your way. It won’t always be easy and there will be bumps in the road, but that’s what community is for. Don’t be afraid to reach out or open up. The only way out is through, the only way through is together, and the only way to truly be together is as our full selves.
JK: I love how you end on this note of unity and finding our identity. Thank you so much, Harper!