Some of the best advice I’ve ever received is simple: “You gotta use what you got, kid.”
This wisdom has been crucial in my journey as a disabled artist living with Osteogenesis Imperfecta (OI)—a chronic disease that impacts my life every day, yet also shapes my art and my approach to life. Sometimes it’s a challenge to find motivation.
When you have Osteogenesis Imperfecta and your job involves marketing yourself, finding the right balance between sharing your disability and highlighting your work can be tricky. My physical challenges affect every aspect of my life, causing daily pain and struggles. However, I never want to be remembered solely for my condition. I strive to show that despite my limitations, I live a fulfilling, meaningful life.
Growing up, my parents made sure I never saw myself as a victim, no matter how many times I faced broken bones. I had responsibilities, even when I couldn’t attend school, and I was taught that everyone faces obstacles in life. Mine just happened to be OI. I could choose to wallow in self-pity, or I could take my circumstances and use them to fuel my art and my motivation.
Art and Disability: Finding Purpose Through Creativity
Being an artist is about more than just creating. It’s about how you present yourself to the world. For me, my art and disability are intertwined. Osteogenesis Imperfecta has shaped not only my body but also my perspective on life. It plays a role in how I approach my work. It’s important to acknowledge that this chronic disease is a significant part of who I am, but I don’t want it to define me. I never want to be seen as a “hero” simply because I live with brittle bone disease.
The truth is, OI has opened doors for me in ways I never expected. It has connected me to a community of people who share similar challenges. Many are intrigued by my story and my art because of how I create—lying on my side due to my condition. My unique approach has made me stand out, and people are drawn to both my art itself and my story.
Using My Disability as Motivation, Not a Crutch
I’ve come to realize that my disability is not a hindrance but a part of my motivation. I can’t let my physical pain and challenges dictate the limits of my art. Just as a famous artist’s work is valued because of who they are, I recognize that my journey adds depth and meaning to my art. However, I’m mindful of the line between sharing my story and overemphasizing it.
Brittle bone disease is a big part of me, but it’s not all of me. I’ve used it as a tool, but I never want to be seen as just a victim of my chronic disease. I want to be recognized for my resilience and my ability to create beauty, despite my physical limitations.
I’m often asked how I manage to keep going. I want to emphasize that it’s not about being “inspirational” because of my disability. It’s about finding ways to live meaningfully and share my art with the world. Every person, disabled or not, faces challenges—they just look different.
Finding the Balance: Marketing With Authenticity
In marketing myself as an artist, it’s crucial to strike the right balance between acknowledging Osteogenesis Imperfecta and showcasing my work. I never want to be “marketed” as a hero or as a victim simply because of OI. Instead, I aim to present it as a fact of life—one that shapes me but does not define me.
With the guidance of my marketing coordinator, I walk the fine line of sharing my story authentically, while ensuring my work remains the focal point. “Use what you got, kid,” reminds me that embracing my story isn’t about using it as a crutch. Rather, it’s about acknowledging it as part of my journey and using it to inspire others.
A Journey of Art, Motivation, and Living with Chronic Disease
In the end, my art and my Osteogenesis Imperfecta are both intertwined in ways I never expected, and I wouldn’t have it any other way. OI is just one facet of who I am, and I choose to use it as motivation. I will keep creating, keep pushing forward, and keep inspiring others with my work.
I hope my story reminds you that challenges don’t define us—they are part of the process. Just as I’ve learned to use my disability to fuel my creativity, I believe we can all use our struggles as motivation to keep moving forward.