Living with Osteogenesis Imperfecta (OI), often referred to as Brittle Bone Disease, means navigating life with unique challenges. As a disabled artist and advocate, I’ve encountered countless misconceptions about living with a wheelchair. People’s comments often fall into two extremes: misplaced pity or misplaced envy. Let’s address both and shed some light on the realities of living with art and disability.
To Person #1: “I’m So Sorry for You”
You wouldn’t believe how often I hear, “Oh, I’m so sorry you’re confined to a wheelchair. It must be so hard.” While I understand the good intentions, this sentiment is rooted in misunderstanding.
Yes, there are challenges to relying on a wheelchair:
- I need to plan trips meticulously to ensure accessibility with ramps, elevators, and sidewalks.
- Rain becomes my enemy because it could short out my $78K wheelchair.
- Activities like mountain climbing, dirt biking, or soccer aren’t options for me.
But let’s dispel the myth that my life is defined by limitations. In reality:
- My wheelchair empowers me to run a full-time business as an artist.
- I regularly attend concerts, meet friends, and enjoy the same kinds of joys others do.
- Challenges are universal. My wheelchair is just one of mine, no better or worse than the obstacles anyone else faces.
For me, the wheelchair is a tool—not a symbol of confinement. It’s a way to navigate life with Osteogenesis Imperfecta and maintain my independence.
To Person #2: “You’re So Lucky”
On the flip side, I often hear remarks like, “You’re so lucky you don’t have to walk! Where can I get one of those?”
First, let me clarify: I don’t know what it’s like to walk. Having Brittle Bone Disease has meant a lifetime of mobility challenges, so there’s no basis for comparison. While there are conveniences to using a wheelchair—like a built-in phone charger and a handy spot for a backpack—there’s also a lot of complexity:
- The process of getting a high-caliber wheelchair is grueling, involving endless paperwork and months of waiting.
- Maintenance is constant, from replacing batteries to yearly checkups and costly repairs.
- The freedom it offers comes with responsibilities, much like owning a car.
Make no mistake, having a wheelchair is a privilege I don’t take for granted. For people with disabilities, access to such equipment is transformative. However, I wouldn’t wish the need for one on anyone—unless, of course, you’re taking up handicap parking spaces unnecessarily!
Making the Best of Life in a Wheelchair
As someone living with Osteogenesis Imperfecta, I’ve learned that life is about adapting. My wheelchair is both a necessity and a gift. It enables me to pursue my passions, including creating art that reflects my experiences with disability and motivation.
When things get tough, I remind myself:
- My wheelchair allows me to live independently and creatively as an artist.
- Challenges are just opportunities to grow and find solutions.
- Everyone faces difficulties; mine just happen to be visible.
Finding Joy and Purpose Despite a Wheelchair
My wheelchair is a reminder that we all have tools to navigate our unique journeys. For me, it’s not just about overcoming physical limitations—it’s about thriving as an artist, entrepreneur, and advocate.
Through my work, I hope to inspire others—whether they live with Brittle Bone Disease, another disability, or simply seek motivation in their lives. Life with a wheelchair isn’t about confinement; it’s about finding freedom and purpose in the tools we have.
For anyone navigating Osteogenesis Imperfecta or living with a disability, remember: your challenges are part of your story, but they don’t define your potential. Keep striving, adapting, and finding beauty in the journey.
Want to learn more about my art or connect with others in the Osteogenesis Imperfecta community? Stay tuned for more stories and updates!