From Lived Experience to Systemic Change: Disability-Inclusive Emergency Planning

From Lived Experience to Systemic Change: Disability-Inclusive Emergency Planning

By Jacqueline Kelley, Vermont Department of Health

I’m a 27-year-old woman, a wheelchair user, and a service dog handler. I’ve been disabled since birth. I grew up in a world that wasn’t built with people like me in mind. From a young age, advocacy wasn’t a choice—it was a necessity. I had to speak up, push boundaries, and demand inclusion just to access what others took for granted.

Throughout school, and even into college—where I was often the only wheelchair user—I had to fight for basic accommodations and equitable treatment. It was during one of those college years, at Providence College, that I found my passion for emergency management. It wasn’t in a classroom or through a textbook. It was during a storm.

It was the day before spring break of my sophomore year. Rain and wind swept across campus, and the power went out. I was on the second floor of an academic building when the lights went dark and the elevator stopped working. Students and faculty evacuated while I was stranded. I called campus security and asked for help. I explained that I needed assistance getting myself, electric scooter and service dog down the stairs. They said no. Not because they were busy—but because I was a “liability.” EMS and fire were unable to assist because they were tied up in the city with down power lines. After multiple calls and arguing with security, they reluctantly came to get me. Lucky for me, this was a minor event, but it made me wonder: What would happen in a major disaster?

That moment changed the course of my life, forever.

Today, I’m a certified Vermont Emergency Management Director. I work as an Emergency Preparedness Specialist at the Vermont Department of Health where I lead disability, access, and functional needs (DAFN) initiatives. Officially, 80% of my job is coordinating the Northwest Vermont Medical Reserve Corps (MRC). 10% focuses on healthcare preparedness and 10% on public health emergency preparedness. You may notice that DAFN isn’t part of my job.

When I joined the department nearly three years ago, I saw that DAFN work wasn’t prioritized. As a disabled person I couldn’t ignore that gap. So, I took it on and brought others along with me.

That’s something I’ve seen across the board: Disabled people often take on advocacy work because no one else will.

Now, I’m known across Vermont for two things—my signature hair bows, and more importantly, for championing DAFN in emergency management. I am part of the Region 1 Center for Public Health Preparedness and Response Regional Coordinating Body run by Harvard. I educate my colleagues about disability and how it intersects with emergency management. I co-lead the department’s Access and Functional Needs Workgroup. I integrate DAFN principles into the MRC, collaborate with the Planning team to incorporate CMIST and DAFN into our Emergency Operations Plan, Health Operations Center, training, and exercises, and work with the Operations team and Buildings and General Services, to develop Personal Emergency Evacuation Plans for state employees.

Beyond my emergency management role, I am part of the Health Department Document Accessibility Workgroup, Vice Chair of the HireAbility State Rehabilitation Council, and Vice Chair of the National Association of County and City Health Officials Health and Disability Workgroup. These opportunities let me weave accessibility into the fabric of our systems.

I’d be lying if I said I didn’t wish DAFN work came with its own dedicated funding and full-time positions. It should. But I’m also grateful to be doing what I love—and to help shape a more inclusive future for disabled people.

Emergency management must include all of us. Our lived experience is expertise. And our presence at the table is essential.