Hardest Hit and Least Protected
When she heard that Hurricane Katrina was about to strike, Benilda, a New Orleans resident who was quadriplegic and used a motorized wheelchair, was not that concerned. After all, she had an evacuation plan - or so she thought. She charged her cell phone, instructed her personal assistant to pack her essentials and, the moment the mayor instructed everyone to evacuate, she called Paratransit, the wheelchair accessible transit system, to take her to the Superdome.
But Paratransit appeared not to be working and the friends and family she called had already evacuated and could not get back into the city to help her. As water began first seeping, then rushing, into her apartment, Benilda tried every emergency number she could think of to no avail. Her personal assistant tried to carry her to a higher floor, but the strength of the rushing water made lifting her up the stairs impossible. The assistant finally had to flee to higher ground herself, anguished about having to leave Benilda behind. Benilda's body has not yet been identified, but her family is certain that she is gone.
Benilda's story was not an isolated incident. While Katrina and then Rita and Wilma caused widespread ravage and devastation, resulting in many deaths and forcing hundreds of thousands of people to become refugees in their own country, the mounting evidence demonstrates that the hurricanes did not affect everyone in their path equally. People with disabilities, who often have the fewest resources and the greatest barriers to evacuation, were among the hardest hit.
According to a poll conducted in mid-September by the Washington Post, The Henry J. Kaiser Family Foundation and the Harvard School of Public Health, of the 61 percent of people who did not evacuate before Katrina hit, 38 percent said they were either physically unable to leave or had to care for someone who was physically unable to leave. Like Benilda - who hesitated at first to evacuate because she knew she would be forced to leave her power chair and her accessible housing - many lacked accessible transportation or the resources to leave before the hurricanes struck. Once stranded, they faced difficulties making their needs for rescue known. For those fortunate enough to be rescued, disaster services were often ill-prepared to meet their needs.
Disability, Age and Poverty
An estimated 20 percent of the U.S. population has some type of disability - a broad category that includes physical, sensory, mental and cognitive impairments.
Poverty and aging compound the barriers that people with disabilities encounter in any emergency or disaster. While disability cuts across the lines of gender, race, ethnicity, age, sexual orientation and socioeconomic class, some groups are overrepresented. People with disabilities are more likely to be poor than any other minority group in the country. And as people age, they are more likely to acquire disabilities.
Too Late Means Too Little
More than ever before, the recent hurricanes brought to public consciousness how unprepared the emergency systems in many areas are to meet the needs of people with disabilities. This is not news to disability experts and advocates, who have for years been trying, with limited success, to educate the public about the issues. Well before September 11, 2001, these pioneers were making recommendations about how to address the many failures of our preparedness, relief and recovery systems.
In some places, like Houston, those recommendations have been incorporated into city plans. Inclusive planning helped to save lives and speed recovery in the Houston area after Rita hit. In many other places, like New Orleans, emergency plans not only failed to include people with disabilities effectively, but also seemed to evaporate entirely in many cases.
Lex Frieden, a power wheelchair user and long-time resident of Houston, has lived through many major storms. Frieden - chair of the National Council on Disability, an independent federal agency that makes recommendations on disability policy to the president and Congress - participated in the planning that made Houston's experience with Rita the opposite of New Orleans' clash with Katrina. Frieden is quick to point out, however, that expertise like his is not a requirement for others who want to participate in local planning.
Frieden notes that the Houston Paratransit system had more than 150 vehicles. The entire fleet of vehicles was used to evacuate people from the Gulf Coast area, all the way down to Galveston and across to Beaumont. Those Paratransit vehicles were used during the three days prior to the event to get people out of the region. The city buses, all of which are accessible in Houston, were diverted from their routes to pick up people with special needs.
Making the Case
Soon after September 11, 2001, the Disability Funders Network (DFN) started a project to inform funders about and engage them in emergency preparedness and disaster relief for people with disabilities and older adults. DFN is a grantmakers' affinity group whose mission is to promote awareness, support and inclusion of people with disabilities and disability issues in grantmaking programs and organizations. Its project will ultimately offer funders a range of print and Web-based resources to help them include people with disabilities in all aspects of their emergency and disaster work, convening and communications, as well as direct grantmaking. One of the project's primary messages is that by becoming more inclusive in their own disaster-related activities, funders can play an important role in ensuring that broader emergency systems do the same.
Out of Sight, Out of Mind
There were also ongoing challenges. Not only were some funders reluctant to consider the needs of people with disabilities - "We don't do disability" is a common response - but others are reluctant to think about emergency or disaster issues when there is no disaster in the headlines. Others feel that putting resources into these issues, especially emergency preparedness, should be the job of government, not foundations and corporate giving programs. DFN found that the considerable interest in its project generated by 9/11 subsided with each anniversary. The tsunami in Asia brought some revival of interest for a few months, but the recent disasters on U.S. soil brought truly renewed interest.
Although crisis-focused interest is understandable, the truth is that the kinds of changes needed to promote the inclusion of people with disabilities and older adults in emergency systems must come before disasters, not in the midst of them. Infrastructure change must occur so that transportation, communication, shelter and other disaster systems are fully accessible to people with disabilities before disaster strikes - so that people like Benilda are not left to die.
A Renewed Wave of Interest
In addition to the misery and devastation they caused, the hurricanes have left us with a teachable moment. Shocked by the extent of the destruction, grantmakers are now beginning to pay attention to disaster issues in ways that go beyond their typical fund-and-forget pattern. DFN has benefited immensely from working with other groups in the nonprofit, government and private sectors. DFN funders joined an ad hoc collaboration of those groups to develop strategies to meet the immediate and long-term needs of hurricane victims with disabilities and, just as important, to provide input on policy and infrastructure changes.
Lessons Learned
This collaborative work has underscored the need for ongoing advocacy to ensure that mainstream emergency systems and agencies become more responsive to the needs of people with disabilities. Grantmakers can be important catalysts in ensuring that the needs of people with disabilities and older adults are integrated into both disaster response and emergency preparedness.
What to Do Next Time?
Funders have demonstrated time and again that they will give after an emergency to disaster response and relief efforts.
In a recent meeting, task force members listened intently as Bill Swenson of the Disability Preparedness Center described how to avoid future tragedies.
"The important links between individuals with disabilities and communities are the groups they are part of," he says, "like their families, social groups and workplaces, and the advocacy organizations and service providers that work with them. Many of these are nonprofits. We need to approach emergency preparedness through community-based groups and institutions that are a part of the lives and support systems of people with disabilities, and of most people in communities. That's the way more people will be able to take effective action."
And that brings us back to foundations, for whom supporting community based agencies is nothing new. We just need to think in new ways about how some of that support might be focused.
Source: Foundation News & Commentary November/December 2005, Vol. 46, No. 6, By Jeanne Argoff and Harilyn Rousso, Edited by Karen Murray
