>>MARCIE ROTH: In all the years that I’ve been doing this work, my lifetime of working in disability rights, I’ve come to learn that rights are not enough.
>VOICEOVER: 20 years of disability rights and inclusion in disaster management: why rights are not enough
>>MARCIE ROTH: We have had catastrophic disasters every step of the way over the past 20 years, but worse and worse with each passing day it seems, and horrific circumstances around COVID, yet again it was very clear that there were things that could have been done to improve outcomes or to decrease the number of disabled people who died, and who are dying as we speak. It became horrifically obvious early on that our years and years and years of trying to get people out of institutions and trying to shut institutions down was now more urgent than ever, because congregate settings, as we have come to learn, are even more deadly in the pandemic than they are on a daily basis. Try as we might, we were very unsuccessful in getting the federal government to give resources to independent living centers, who are mandated to transition people out of nursing homes, they have the skills, they’re federally mandated in the US to do this work, and yet we were unsuccessful in getting the federal government to provide resources for these qualified, skilled folks to assist people who were asking, begging to be moved. We have only been successful in getting the federal government to fund one person to be relocated. In all the years that I’ve been doing this work, my lifetime of working in disability rights, I’ve come to learn that rights are not enough. All these people who’ve died over the last year and a half from COVID in congregate facilities, every single one of them had a right to be someplace other than an institution, and that right meant absolutely nothing. I am righteously indignant about how bad things are. We certainly still need to be fighting for those legal protections that so many people worked so hard to put into place, but if all we’re doing is trying to make powerful people and powerful systems do what the law requires them to do, we’re always going to be in this way. As I look back on 20 years of trying to change outcomes for people with disabilities and disasters, a rights-based approach is not the way to go. We are going to have to significantly change who’s calling the shots, we need to make sure that the people who are most affected are the people who have the most power. The people who are leading the disability justice movement need to have the power and platform to lead us into a much more just world, before, during, and after disasters. I’m working hard at learning how to make space for that. There are a bunch of folks that are approaching a lot of this stuff from a very different angle, and clearly the way I’ve been doing it isn’t getting the job done, so I’m looking forward to learning some new and different ways to go at this.
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