Keizer, Oregon-based 17-year-old Riley Hurt has been involved in disability advocacy for as long as she can remember. Now, combining her expertise and lived experience, Hurt is spearheading a new core advisory group for Marion County. The group will connect the local disability community with emergency management professionals to improve outcomes for disabled folks affected by disasters.

According to the Federal Emergency Management Agency, on whose model the Marion County program is based, groups like this “promote inclusive emergency management by encouraging collaboration and partnership among members of the whole community, including disability agencies and organizations and emergency managers.”

Hurt established the Marion County group with guidance from mentor Jill Moore, an inclusive playground design expert based in Minneapolis. The two met through the Disability EmpowHer Network, an organization that offers mentorship and teaches disaster preparedness, independent living and leadership skills to young disabled women.

The organization’s flagship program is a summer camp, which hosted its first cohort of 13- to 17-year-olds, including Hurt, in the Adirondacks last year. Each camper was tasked with undertaking a year-long project in inclusive disaster preparedness with the support of a mentor. Hurt chose to establish the Marion County Core Advisory Group.

Stephanie Woodward, executive director of the Disability EmpowHer Network, has years of professional experience in emergency management, including work on a disaster response ground team in Puerto Rico that assisted disabled people in distress in the wake of Hurricane Maria. She says developing emergency management-related projects shows campers that “there is a deeper community out there that they are connected to, impact, and plan for.”

There is also a real need for inclusive emergency management. Disabled people are two to four times more likely to die or sustain critical injuries during a disaster than non-disabled people. A combination of factors leads to this condemnable statistic, including poor planning and barriers to accessing emergency information or services. In a statement to the United States Senate Special Committee on Aging in 2017, Paul Timmons, president of Portlight Inclusive Disaster Strategies at the time, also attributed the disproportionate rate of injury and death to the “widely shared but incorrect assumption that people with disabilities and older adults are ‘vulnerable,’ ‘special,’ or ‘at-risk,’ simply because of their diagnoses or stigmatizing beliefs about disability and aging.”

Ultimately, the systems meant to serve people during emergencies are not designed with disabled people in mind, and disabled people are often excluded from shaping these systems because their expertise is stigmatized or dismissed. The spaces where emergency systems are designed, like elected government and the healthcare, technology, and engineering industries, are also inaccessible.

“There’s this huge presumption that people with disabilities need to be taken care of, when in fact, non-disabled people, when they plan for us, do more harm than good,” Woodward says. “Disabled people know what we’re doing and we know more about how to serve people with disabilities than [non-disabled people] do.”

Hurt agrees that lived experience has made her better suited to establishing the Marion County Core Advisory Group. “I’ve been involved in disability advocacy since I was basically born,” says Hurt, whose mother has made a career working in disability equity-related nonprofits. Hurt is the third generation in her family to live with Charcot-Marie-Tooth disease, and she uses a power chair.

She often notices failures in design and emergency planning in her community, like at a newly-renovated local library where Hurt says the second floor has no area of refuge — a designated accessible space equipped with two-way communication systems, where people who cannot evacuate via stairways would gather during an emergency like an earthquake or fire.

Hurt also chose to establish a core advisory group for Marion County because the area is disaster-prone. “In Oregon, we are at risk for a ton of different disasters,” she says. “We have basically everything from earthquakes, to floods to drought — across the spectrum of different disasters.”

Across the country, the need for more inclusive emergency management grows more evident every time a climate catastrophe hits. During the record-breaking heatwave in Portland, Oregon, last June, some of the first Portlanders to die from hyperthermia were disabled adults living in low-income neighborhoods. When Hurricane Ida made landfall in Louisiana last August, disabled residents struggled to access support for evacuation. Others died at evacuation centers that were overwhelmed and ill-equipped to accommodate needed medical equipment.

While climate change-related disasters are a growing concern, emergency management also encompasses public health crises like the ongoing COVID-19 pandemic and other emergencies like mass shootings. “Emergency management is kind of an umbrella term for response or prevention preparedness,” Hurt explains.

The Marion County Core Advisory Group’s first meeting was held on June 7, and meetings are tentatively scheduled monthly going forward. The first agenda items included educating community members about emergency management and the role of the core advisory group. Hurt says she also solicited input on “how we can best support the community.”

Hurt also hopes to plan as-needed meetings to allow the local community to process current events. These meetings will provide a space for “whatever our community really needs to hear, or the resources that they need to have,” says Hurt, who wishes a similar space had been available to her as she processed grief in the wake of Oregon’s recent destructive wildfires. While the fires did not burn into Keizer, the fallout still “impacted me greatly mental health-wise,” she says.

As Hurt’s mentor, Moore says her role has been to offer guidance on everything from crafting professional e-mails to navigating the workplace as a disabled woman. “Working on this project with her has been super easy because she’s such a good support system for me,” Hurt says.

When developing the group, Hurt also received guidance from Woodward, representatives at FEMA, and existing core advisory groups, including the Washington-based Coalition on Inclusive Emergency Planning and the New Jersey-based Core Advisory Group at the Alliance Center for Independent Living.

Moore believes the project has significant potential. “Having actual [disabled] voices and being able to articulate what we need for support is really big. It’s not just somebody speculating what we might need,” she says. “This is really just the tip of the iceberg, opening the door for these kinds of conversations.”

Hurt says she hopes the project will continue for years and that those who join, particularly the emergency management and infrastructure professionals, will educate themselves about the disability community. “I hope it opens doors towards disability equity,” she says.