Transcript for “20 Years of Disability Rights & Inclusion in Disaster Management: How it Started”

>[AUDIO DESCRIPTION]: 20 years of Disability Rights and Inclusion in Disaster Management: How it Started

>>MARCIE ROTH: I’m Marcie Roth and I’m the Executive Director of the World Institute on Disability. I got involved at the intersection of disability rights and disasters just in the immediate aftermath of the 2001 9/11 terrorist attack. I was the Director of Advocacy and Public Policy for the National Council on Independent Living and on September 13th of 2001 I got a phone call from colleagues in New York City very concerned because they had frozen the area around Ground Zero, meaning that the only folks who could get in were people who could show identification they lived there, everyone else was not allowed in. And while this made a whole lot of sense for overall management of a very horrible and chaotic situation, for people with disabilities, thousands of them, it meant that personal assistance services, the people who provided personal assistance services weren’t able to come in. Paratransit, accessible transportation wasn’t allowed in. Unintended consequences were starting to become known and my colleagues in New York asked me in my role with the National Council on Independent Living if I could help them. After working in disability rights my whole career, I suddenly realized that I didn’t have the faintest idea what happened for people with disabilities and disasters. And so, I started calling people and trying to get some guidance because really, nobody knew, there were very few people working on disability and disaster issues at that point. I think the things that concerned me the most were that people with disabilities were essentially not considered. While I don’t think it was intentional that the supports and services that people with disabilities needed were blocked, but when I tried and when others tried to start developing some systematic approaches it became clear that many people considered disability inclusion in the planning to be a nuisance, to be unnecessary,  whether it was involving people with disabilities at the planning tables in local communities, making alerts and warnings accessible so that people had the information that they need to take personal protective measures and to help their community, you know for people with mental health disabilities, mental health resources were being provided to people with new experiences but those same resources were not equally available to people who had a mental health disability before. You know, considerations about how people got out of multi-story buildings, sheltering became a very obvious a point of failure. There was an assumption that people with disabilities should all go to hospitals or medical facilities when in fact, most people with disabilities need assistance to maintain their health in a disaster, like everybody else, but certainly don’t need acute medical care, unless they’ve developed an acute condition or unless they’ve been injured, like anybody else. You know, the presumptions that are made about people with intellectual disabilities or people with communication disabilities, you know all those assumptions are magnified in a disaster. When you have a disability, you have to anticipate what problems might come up – we are actually great emergency managers, we probably have more practice at it than people who don’t have disabilities, and so we’re actually an asset in our community when thinking about planning for disasters. In that period following 9/11 was the beginning of a 20-year journey that has really been an opportunity to do a deep dive into how we can improve outcomes for people with disabilities but for the whole community in disasters.


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