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In most cases, government agencies and companies consider people with disabilities to be costly because they have special needs that couldn’t be further from the truth when planning for weather-related disasters. In Texas this February, emergency officers and philanthropic organizations worked tirelessly to help residents. But the 3 million Texans who identify as disabled say they are too late – as in years too late. They wonder why their insights and experiences are being ignored, saying that continued marginalization at the highest levels comes at an enormous cost for all people.
The good news is that all the key components for success are in place, including the people, partner agencies, and well-researched ideas. What is holding back a better system? Surprisingly, no costs, but cooperation. As I researched this post, I read a detailed report by FEMA, written in honor of the 30th anniversary of the Disabled Americans Act, which is essentially a guide to being successful in connecting communities, governments, and services. What is missing? Financing, yes, but also boots to the floor inclusivity. The inclusion of people with lived experience is often stubbornly rejected because it mythically appears too costly, difficult or without evidence-based results. That’s Wrong. This kind of ingrained bias shouldn’t be the hindrance to better planning. Here’s a look at the gaps that could be filled using the invaluable knowledge of people with disabilities and attorneys from California to Texas, Puerto Rico and beyond.
Gap: Preparing for major disasters
“Emergencies and weather-related disasters will only get bigger – and they will disproportionately affect people with disabilities,” said Marcie Roth, formerly FEMA, now CEO of the World Institute on Disability (WID). Something has changed. For example, at the time of Hurricane Katrina, people often did not identify as disabled (that is how they do not think of themselves), making it difficult for FEMA to properly identify needs. According to a 2016 report on the FEMA website, awareness and education have adjusted these numbers. Crucial changes are being made as 11.5 percent of people (versus 3%) now identified themselves as disabled in surveys from 2016. This statistic is part of the 30 ways FEMA is supporting emergency preparedness, response and recovery for people with disabilities. The detailed report is a goldmine of examples of collaboration between the ADA National Network, the National Association of Councils on Developmental Disabilities, and the US Access Board. Why Isn’t Justice More Obvious?
This kind of collaboration doesn’t happen on a large scale – this is the first stage that would create a strong foundation for change. The second leg is a separate, equally important one. There is a need for better qualified paid support services for people with disabilities (DSPs). The Case for Inclusion 2021, filled with insights from ANCOR and United Cerebral Palsy, describes the problems encountered during the pandemic and reveals the unacceptable level of care in group and retirement homes. This population is a key factor in disaster planning. The third stage of change is agencies that have to turn up the volume and listen on people with disabilities in order to do research, create advisory roles and provide emergency training.
I’ve already given you a lot to unpack. In truth, filling the gaps relies on a simple premise, which is inclusion.
Gap: information and education
“If people with disabilities are informed about their civil protection practices, they can save themselves in such circumstances without the help of other people.” However, reports in Science and Scientific American show that there is an education gap. Wouldn’t it be amazing if this type of education and training could become a new employment option for people with disabilities? According to some studies, exercise can directly affect one’s chances of survival after a disaster. “If FEMA has not yet arrived, disabled people can be forced to make life or death decisions in the event of a disaster. A woman with multiple chronic illnesses had to decide whether to ration oxygen and try to call for a tank of gas at the same time? Or could she expect a new tank in the morning? She made a phone call – and got a new tank delivered the next day, according to a Facebook group aptly named The Self Determination Group (SDG). The Dallas / Fort Worth Area Resource Group offered five courses in 2020 covering issues ranging from voting rights to policy making. This is not a charity, it is progress.
Unsurprisingly, SDG and its partner The Arc in Dallas / Fort Worth are increasingly in demand. Around 15% of the state is disabled and unprepared for the next disaster. “The lack of preparation is due to federal, state and local officials failing to work with organizations led by people with disabilities, according to the SDG side and Germán L. Parodi, co-executive director of the Inclusive Disaster Strategies Partnership. The Arc is a national organization that provides a model for national collaboration. The upcoming virtual seminar on disability policy in April is an example.
It seeks to undo what global research shows in journals such as Science and further discussions in Scientific American, where research does, “Disabled populations were largely absent from the conversation and … their unique challenges received little attention.”
Gap: Are you the point person?
There is a lot of talk and not enough inclusion policies, proponents say. Collaborative working is a common bottleneck for companies that are used to working in silos. When there is little cross-pollination, or sometimes when inclusion is everyone’s business, nobody will. When ideas are collected, they also need to be curated. If not, the progress will slow down to a crawl. There should be an inclusion problem about the size of an anthill. Instead, it seems to be an imposing mountain in the eyes of too many executives. One challenge is the myth that people with disabilities cannot understand or communicate their needs. In 2020, many advocates are calling for BS on this theory. “Disaster planning for people with disabilities. We perpetuate inequality with every step we take and risk putting ourselves at a disadvantage, says Michelle Villeneuve, a professor who specializes in working for inclusion at the University of Sydney.
Emily Ladau, author and disability rights activist, says talking about disability can be uncomfortable and scary. “Instead of realizing that disability can at some point be part of everyone’s identity, we ignore the problem and alienate the disabled community.” I agree, especially when reflecting on my own experiences talking about my disability. “We shouldn’t expect some people to make sacrifices or see accessibility as a burden. Instead, we should focus on ensuring a fair experience for everyone, ”says Ladau.
Gap: Understanding Crip Life
Disabled people need to be seen as powerful stakeholders, not victims. This is a change of mindset as well as an organizational or infrastructural problem. There doesn’t seem to be a research gap. For each disability there is a stack of annual reports showing the urgent need for new systems of training, technology, and accessible change. Information hoarding is one of my specialties, so I know how addicting research-gathering can be. It’s time for the hard part. Take these insights into the community.
When you meet with disabled lawyers, you might be surprised. The bad vibes and pride, technical know-how and polished knowledge of the politics you come across are breathtaking. Syracuse University recently sponsored one called A Crip Reckoning. The event reflected the ADA’s 30th anniversary and the Movement for Justice now and it was exciting to hear a new generation of disability advocates speak about the withdrawal of the word crip. “We are now using the verbal-verb version not only to claim our place at the table, but to create justice.” It also means imagining new and fully accessible and inclusive avenues for people who are physically different to be part of the mainstream, whether at work, in healthcare or in emergency preparedness, “said Alice Wong, an advocate for the disabled -Culture and brain trust behind the Disability Disability Project.
Gap: Great thinkers line up
I will choose Texas as the February arctic emergency and blackout are still fresh in people’s minds. The governor himself uses a wheelchair and Texas (due to its size) has the second largest number of disabled people in the nation. It would be wonderful to see Texas lead the way. Governor Abbott’s newly appointed Committee on Disability, newly appointed a few days ago, can align the work of the higher-level government committee with the work and knowledge of the grassroots. If not, it will be a lost opportunity
Texas is also home to business titans who take pride in doing things differently – just like people with disabilities. It is often referred to as the epicenter of technology and energy. As for the economy of 2021, a focus on care and disability issues is aimed at a large segment of the needy population. The determination of disability attorneys combined with Texas business savvy could make a strong insurance policy against another storm like the one they just weathered.