Living with Osteogenesis Imperfecta (OI)—commonly known as Brittle Bone Disease—comes with unique challenges, particularly when it comes to mobility. As a disabled artist whose work and lifestyle depend on accessibility, having the right wheelchair is not just a convenience but a necessity. However, the process of acquiring a new wheelchair is anything but straightforward, as I recently experienced once again.
The Complex Process of Getting a Wheelchair
My wheelchair is my lifeline. It’s a custom-built, high-tech device that costs more than most cars. With limited companies producing electric wheelchairs, I’ve found that Swedish manufacturer Permobil offers the best option for stability and functionality. Despite having an outlet in the U.S., a new chair often must be shipped internationally, adding to the complexity and time required.
The first step is selecting the right model. My current wheelchair, though reliable, has started to show signs of wear, including electrical issues that signal it’s time for a replacement. After consulting with my repair company, NuMotion, and my Permobil representative, I opted for a smaller pediatric model. It offers a compact design, better suited to my lifestyle as a professional artist who frequently transports art and jewelry displays for shows. While this chair sacrifices some features like higher elevation and reclining, its smaller footprint will greatly improve maneuverability and portability.
The Insurance Battle: A Frustrating Reality
Once the chair was selected, the next step involved a series of evaluations and paperwork. My orthopedic doctor confirmed my need for a wheelchair, while my physical therapist conducted a detailed seat evaluation to justify the specific features. NuMotion then submitted the request to my insurance provider and Louisiana Rehab Services, which typically funds what insurance doesn’t cover.
But then came the dreaded denial letter. My request for a pediatric wheelchair was rejected because, according to Medicare policy, pediatric chairs aren’t approved for individuals who “won’t grow.” The irony? The requested wheelchair is less expensive than my current model, which Medicare approved five years ago. The rejection had nothing to do with functionality or necessity—it simply didn’t check the right bureaucratic box.
The Larger Issue: Art, Disability, and Systemic Challenges
As someone living with a chronic disease, these roadblocks are far too familiar. The insurance system isn’t designed for flexibility or individualized care; it prioritizes rigid policies over real-life needs. For a disabled artist like me, this lack of adaptability affects not just my mobility but my ability to pursue my passion and livelihood.
Art has always been my outlet and motivation. It’s how I’ve turned my physical limitations into a source of empowerment, creating pieces that inspire and tell my story. But the challenges of navigating a system that doesn’t fully support the disabled community can be disheartening.
Why Change Is Needed for Wheelchair Users
While I’m not a political person, my experiences highlight the need for systemic reform. The current Medicare framework struggles to meet individual needs, let alone the demands of a broader population. Expanding access without addressing these fundamental flaws risks further complicating an already inefficient system. Reform should focus on creating flexibility, reducing red tape, and ensuring people with chronic diseases like Osteogenesis Imperfecta can access the tools they need to live fulfilling lives.
Moving Forward with Determination
Despite the frustrations, I remain hopeful. My incredible team of professionals is working tirelessly to navigate these obstacles, and I’m confident we’ll find a solution. The delay may push the timeline close to my busy holiday art and jewelry season, but I’m determined to make it work.
Living with Brittle Bone Disease has taught me resilience. Whether it’s overcoming physical challenges, navigating insurance denials, or building a career as a disabled artist, every setback fuels my motivation to keep pushing forward.
To my fellow artists, individuals with disabilities, or anyone facing systemic challenges: don’t give up. The journey may be frustrating, but with persistence and the right support, you can achieve incredible things.
What challenges have you overcome in your journey? Share your story—I’d love to hear how you’re making a difference in your own way.