This Disability Pride Month arrives at a moment of profound uncertainty for disabled Americans. The promise of the Americans with Disabilities Act (ADA) feels increasingly fragile as the systems that support it – from the federal government to Medicaid access – face constant attack. Too often disability policy is treated as abstract or siloed into separate conversations about healthcare, employment or civil rights. It isn’t until our own lives intersect with those systems that we see how connected they are.
A few weeks ago, a bacterial infection left me severely dehydrated and in the hospital. Within 48 hours, I went from taking a three-mile walk to struggling to make it to the restroom on my own. Living with a chronic condition or disability often means learning to adapt. Sometimes your body changes gradually. Other times, it changes over the course of a weekend and you adjust because you have no choice. You learn – sometimes begrudgingly – to respond to what your body needs instead of what you want it to do.
As someone with a complex medical history, this wasn’t unfamiliar territory. Yet within minutes of interacting with paramedics, I found my instincts questioned. Their assessment almost made me reconsider what my physician and I knew about the unique risks dehydration poses given my anatomy. For a few moments, I questioned whether I needed emergency care and that uncertainty followed me into the hospital.
Sitting in the emergency department, surrounded by people who looked like me, I felt profoundly vulnerable. At the same time, I was acutely aware of the system of care around me. Too many women do not have access to paid leave and face financial barriers that make them more likely to delay or forgo preventative care. My job gives me the flexibility to focus on getting well instead of worrying about missing work. Family and friends stood ready to support me.
At one point, a resident walked in to inform me of a decision made by a surgeon I had not yet met. Immediately, I started calculating how firmly I could advocate for myself without being perceived as difficult. As a Black woman, these calculations are critical. How many questions are too many? At what point does self-advocacy become confrontation in someone else’s eyes? When does fear get mistaken for anger?
Even in one of my most vulnerable moments, I recognized that I wasn’t facing it alone. Layers of support surrounded me: health coverage, financial stability, supportive employer and people who knew how to fight alongside me. Looking around, I couldn’t help but wonder how many others were navigating the same uncertainty without those supports.
I’ve spent much of my career working on disability employment policy and economic security. Sitting in that waiting room brought those issues into sharp focus. We often discuss health insurance, paid leave and economic security as though each belongs in its own policy conversation. Real life doesn’t work that way. Together, those systems shape whether people seek care early or wait until a crisis, whether they can recover without worrying about a paycheck, and whether they’ve had someone beside them when they need to fight to be heard.
My mother taught me to trust my instincts and speak up when something didn’t feel right. The disability community sharpened those lessons. It reinforced the importance of trusting my lived experience, even when others expressed doubt. It reminded me that asking for what I need is not the same as asking for special treatment and that strength isn’t measured by how little support we need. Over time, it instilled a fierce conviction that my voice belongs in every conversation about my own care.
As I recover, I keep thinking about the timing of this experience. I am writing during Disability Pride Month while disabled people once again defend the right to live and thrive in community. Recent months have brought renewed challenges to many of the supports that make community living possible: healthcare access, economic security, civil rights protections and independent living. A trip to the ER – something any of us can experience – is a reminder that these systems are not theoretical. They become real the moment we need them.
I am grateful for my family and friends who supported me through the week. I am equally grateful to the generations of disabled advocates whose work has made moments like these navigable – not just for our community, but for everyone who depends on strong public policies to live, work and fully participate in society. The dismantling of these protections and the erosion of the ADA’s promise doesn’t just threaten the disability community. It threatens us all. As Disability Pride Month comes to a close, let it remind us that preserving that promise is a responsibility we all share.