For most of my life, other people told my story. As a teenager, I saw my story appear in newspaper articles, documentaries, and conference presentations, focused on my rare genetic condition, scientific discovery, and perseverance. The stories helped other families find answers and gave people hope, and I remain grateful for the community they created. As I grew older, another story unfolded alongside the public one and ultimately shaped the direction of my work.
Before continuing, I want to acknowledge that I do not have Ehlers-Danlos syndrome myself. I was invited to write for this community because the systems affecting people with EDS often affect people with disabilities more broadly. For the first fifteen years of my life, I lived without a correct diagnosis as doctors searched for answers. I have a rare genetic movement condition, use a power wheelchair, and rely on daily support services. Even though my diagnosis is different, the administrative challenges surrounding disability, coordinating care, navigating fragmented systems, and maintaining access to essential supports are experiences many of us share, regardless of the condition listed in a medical record.
A parallel story unfolded through eligibility reviews, funding decisions, provider meetings, appeals, waiting periods, and administrative processes that quietly determined which opportunities remained possible. Those experiences rarely appeared in public conversations because they happened behind the scenes. They became what I now think of as the quiet parts of disability.
Most public conversations about disability begin with medicine, diagnoses, symptoms, and treatments. I spent years learning how my body worked. I also spent years learning how disability systems worked. The second education took much longer.
Every agency operated according to different rules, every program relied on different eligibility requirements, and every funding source required different documentation, rarely designed to communicate with one another. Managing disability became an ongoing exercise in coordination and problem-solving that existed alongside the medical realities people were far more likely to notice.
People see someone earning a graduate degree, leading an organization, or working in disability policy, but they rarely see the scheduling, provider coordination, and constant communication required before those opportunities become possible. The administrative work disappears behind the visible accomplishment, creating the impression that independence happens naturally when it actually depends on continuous coordination.
I understood that intellectually for years. This summer, however, I experienced it in a way that permanently changed how I think about disability policy.
I traveled from California to Washington, D.C., for a nationally competitive ten-week disability policy internship. My family, service providers, and I spent months coordinating the daily support I would need while living across the country. Less than fourteen hours before my flight, an official denial was issued. We did not see the email until after I had already landed in Washington.
Within three days, the agency providing my personal care services was instructed to stop services altogether while I was more than 2,000 miles from home. My father booked a next-day flight across the country and spent seven weeks helping me shower, get dressed, transfer in and out of bed, and navigate daily life so I could continue the internship I had already earned. My mom and her best friend later flew across the country to relieve him for the remaining three weeks, ensuring I could finish my internship despite the complete breakdown of the support system that was supposed to make my participation possible.
Nothing about my disability, support needs, or qualifications changed. The only thing that changed was my location.
I have since come to see disability as a medical experience and an administrative one. Bodies shape disability and systems shape disability. Policies determine if support follows someone across geographic lines, funding structures influence whether independence remains stable, and eligibility requirements affect employment, education, mobility, and long-term planning.
Barriers like these often appear ordinary because they are embedded within routine administrative processes. An eligibility review seems procedural, a delayed approval appears temporary, and a funding decision looks like paperwork. Each decision carries consequences extending far beyond the document itself, influencing if someone accepts a job, pursues higher education, or maintains the support necessary to live independently.
My experiences are not unique because millions of people with disabilities navigate similar systems every day, spending hours on the phone explaining their circumstances, completing the same paperwork repeatedly, or coordinating services that were never designed to function together. Despite shaping daily life just as profoundly as diagnoses themselves, those experiences rarely appear in disability narratives.
Disability policy has transformed millions of lives by expanding civil rights, increasing community living, and creating opportunities that previous generations fought so hard to secure. Such achievements deserve celebration, and they also remind us that policy continues evolving. Every administrative process, eligibility rule, and funding structure reflects choices made by people. Choices can be revisited, and barriers created through policy can also be reduced through policy.
The quiet parts of disability deserve to become part of our public conversation because they shape opportunity every single day. They influence education, employment, housing, relationships, mobility, and independence. Once we begin paying attention to those quiet parts, we gain the ability to ask better questions about the systems surrounding disability, and better questions create better policy, and more opportunities for people with disabilities to participate fully in their communities.
About the Author
Lilly Grossman is a disability policy advocate, researcher, writer, and Founder and CEO of Beyond The Box Advocacy. As a woman with a disability who uses a wheelchair, her work explores how policies and systems shape independence, opportunity, and everyday life for people with disabilities. She is the author of the forthcoming book, The Quiet Parts of Disability. This book examines the often unspoken realities of disability and the policies, systems, and expectations that influence what people with disabilities are able to want, pursue, and become.
Sept, 2026
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