From Superstorms Katrina and Sandy to the wildfires of California and unprecedented floods of South Carolina, there has been one common refrain: The Red Cross doesn’t understand disability, and that puts our lives at risk. This is the story of how that’s about to change.

“Are you and Kelly gonna be OK? They’re predicting terrible flooding!”

Our friend, Sister Colie, was calling to check on us, as she often does.

“C’mon, Sister! You’re a nun. Surely to God you’ve heard of Noah! We’re in better shape for this than anyone you know.”

And it was true. My wife, Kelly, and I live aboard the Tumbleweed, Too, a 34-foot sailboat docked at a marina just off Charleston Harbor. We had secured our office, removed our cars to high ground, stocked in plenty of food, drink — and candy — and settled in. We were ready for the rains, and the resultant flood. Our home floats. We were good.

See also: The End of the World As We Know It

As it turned out, we were in much better shape than thousands of others with disabilities in South Carolina dealing with the catastrophic October floods. Weather experts eventually referred to it as a flood that comes along once in 1,000 years.

The rain began Thursday evening, Oct. 1. It didn’t stop. Friday morning, flood reports began to come in from across the state. By Saturday morning, it was clear the event was shaping up to be a dangerous situation, especially for South Carolinians with disabilities.

My first clue was seeing an American Red Cross representative on television announcing shelter openings with the invitation, “Everyone is welcome.” After a few calls, it became apparent there were problems at shelters throughout the state, including one Red Cross shelter manager who responded to questions about accessibility by saying, “Honestly, people with disabilities just aren’t a priority for us right now.”

Bear in mind, the flooding in South Carolina came on the heels of egregious issues with the Red Cross response to Butte and Valley wildfires in California just weeks before. Those problems began immediately, when the Red Cross, faced with a lack of accessibility and needed care, moved two of our people from shelters to nursing homes. This culminated a couple of weeks later when I received a phone call from Vance Taylor, chief of the Office of Access and Functional Needs for the California Office of Emergency Services.

“Paul, I’m sitting here in a shelter right now,” said Taylor. “The shelter manager tells me he has turned away several people with service animals, saying, ‘Red Cross national policy prohibits us from accepting service animals at our shelters.’”

As I sat on my boat, working the phones and trying to deal with the emergent situation in South Carolina and thinking about all that had happened in California, I was overcome by a feeling of hopelessness.

American Red Cross is the major player in emergency preparedness and response. What they do matters. It impacts how other players behave, as they are the industry leader and operate or are intimately involved in the operation of most of the emergency shelters in the United States.

For two and a half years, I and a host of other advocates have been beating our heads against the wall, begging Red Cross to let us help them get it right for our community. As the rains continued to fall in South Carolina, it was clear that we hadn’t moved the needle at all.

The Katrina Effect

Hurricane Katrina was a clear benchmark of how bad things were for everyone involved, as few had given any thought about how to prepare for and respond to a catastrophe of its magnitude.

Beyond Shelters Sheltering gets a lot of attention, but it’s one leg of a tripod, the other two being communication and transportation. If one fails, the whole system collapses. A fully accessible shelter is worthless if one doesn’t know about it or can’t get to it. And it’s not always the fault of the Red Cross. There’s no better example of this than the story of Barbara McWilliams, the 72-year-old woman with multiple sclerosis who was stuck in her home during the Valley Fire in California, and whose Sept. 12 death was caused by a series of gross systemic failures. No one thought the fire would actually reach her house at first, so McWilliams, a retired teacher, told her PCA, Jennifer Hittson, that she would be fine and did not need to evacuate. Hittson left when her shift ended. Neighbors, too, had offered McWilliams a ride, but she turned them down as well. “You have to realize what she was probably thinking,” Hittson said to SFGate. “It was a lot of work for her to get out of the house.” Hittson also told the press how she tried in vain to get a deputy sheriff to go rescue McWilliams once it became clear her home was threatened by the fire. Although it would be easy to cast specific blame for McWilliams not being evacuated in time, this is obviously not a story about failed sheltering. Communications and transportation are also key to emergency preparation, and there was not an effective plan to get someone with her level of disability to safety. The takeaway lesson from this situation is the one we’ve seen over and over and over again: if “plans and planning” don’t change how services are executed, then they’re pointless.

“The staff in the LIFE of Mississippi Biloxi office were certainly old hands at hurricane preparedness and had taken what they thought were the appropriate steps both personally and in terms of the LIFE office,” says Christy Dunaway, who was director of LIFE of Mississippi, the state’s network of Centers for Independent Living. “But no one expected a 30-foot storm surge. None of them ever expected to be swimming for their lives, roped together with their family, walking through head-deep water.”

It was three days before Dunaway, who lives in Jackson, Mississippi, knew all of her staff had survived and five days before all of the people served by LIFE could be accounted for. Once they were able to get in touch with each other, the staff members who were not in personal crises visited the shelters to see if they could find and serve people with disabilities. “Most of the Red Cross shelters turned us away at the door, so we camped out in the parking lots and waited for people with disabilities to come outside,” says Dunaway, who now chairs the National Council on Independent Living’s Emergency Preparedness Subcommittee [see “Brokering Disaster Relief,” below].

Shaken up by what had happened to people with disabilities during and after Katrina, disability rights advocates like Dunaway started reaching out all over the nation, and some strong partnerships were formed with emergency responders on local, state and even federal levels. The good work of the Georgia Disability Emergency Management Coalition, run out of the State of Georgia’s ADA Coordinator’s Office, comes to mind. And in 2009, President Obama appointed one of our own, disability rights advocate Marcie Roth, as senior advisor, disability issues, for FEMA [see “Marcie Roth,” below].

The communication that went on after Katrina was good, as it resulted in introductions and some plans. But there was a view held by some of the stakeholder organizations that, “OK, we’ve done this, we’ve got it.” And so disaster relief planning for people with disabilities stagnated.

Disaster relief is a fluid business, and it’s very relationship-dependent. It’s critical that we stay engaged and continue to nurture the relationships and continue to look at our plans and fine tune them and address them on an ongoing basis. Part of the issue here is that, with the exception of Portlight, none of our stakeholder organizations are full-time disaster relief providers for people with disabilities. They’re doing great work, but they have other issues upon which to rightly expend their resources.

It’s my belief that while Katrina precipitated the beginnings of us building a foundation, in many ways, the efforts stopped there. The lack of a meaningful structure upon the foundation is at the root of a lot of the problems we continue to see.

Red Cross Breakthrough

During and after Katrina, our people suffered and died in disproportionate numbers, and this continued with Hurricanes Ike, Isaac and Sandy. Ten years on, and our experiences in California and South Carolina showed no indication that things were much different.

The fact of the matter is, the climate is changing, and extreme weather events are going to get worse and more common. One of my great worries is the certainty of massive human migration as a result of climate change. If the emergency management overlords don’t get it right, our people will continue to suffer and die in disproportionate numbers. Aside from the migration issue, the simple fact of increased frequency and severity of disasters is enough to make this issue one of the most important ones facing our community.

But things may be looking better.

For years, Portlight and NCIL have been asking the Red Cross for two things: First, the opportunity to engage in meaningful, continuous training at the grassroots level with volunteers and staffers involved in the real-time delivery of sheltering and services; and second, a full-time disability inclusion coordinator at Red Cross national headquarters. We were stymied at every turn in our efforts to engage in meaningful training, and were flat turned down on our request for a disability inclusion coordinator. This meant there was no one internally within the Red Cross to whom we could turn for any satisfaction.

But then two long-term Red Cross employees who had been close to the situation in California, Katherine Galifianakis and Mary Casey-Lockyer, were deployed in South Carolina during the floods and saw first-hand what was needed for our community. They reported back to Brad Kieserman, who was new in his job of vice president of disaster operations and logistics for Red Cross. He had served as general counsel at FEMA, and worked closely with Marcie Roth to create and nurture FEMA’s Office of Disability Integration and Coordination.

While at FEMA, Kieserman had seen firsthand successful efforts to embrace our community and our issues, so he inherently understood the problems we were having with the Red Cross, and was in a position to effect immediate change. In mid-October, within just 72 hours of Galifianakis and Lockyer proposing the idea, I found myself standing before about 150 Red Cross staff and volunteers, giving them training and insight as to how to serve our community. By the end of the month, I had spoken to about 500 such people in South Carolina, California and Texas.

Their response was universally positive, encouraging, and gratifying. Many of the same players who heard these trainings in South Carolina and California were soon after present in Texas in response to the late October floods there, and I’m pretty sure it’s no coincidence that this disaster response operation was probably the Red Cross’ finest hour, relative to their service of our community.

Prior to the trainings, it was a different story. “In California, I was free to survey all of the Red Cross shelter facilities, but when I pointed out issues of inaccessibility to shelter managers, they showed no interest in fixing the problems,” says George Kasper, a Portlight staffer who deployed alongside Red Cross for the California wildfires. “I wasn’t even able to do something as simple as deliver a couple of much-needed wheelchairs to survivors in one Red Cross shelter, even though there were stacks of them going unused in another.”

Just a month later, after the trainings, Kasper reports, “Things were so much better on the flood response in Texas. We were recognized as respected partners, and as the main point of contact for volunteers and staff when they encountered survivors with disabilities who had immediate needs.”

So the training has gone from a theoretical request to a meaningful reality, and the Red Cross has even agreed to stand up a disability inclusion coordinator, and to work with Portlight, NCIL and other stakeholder organizations to create and nurture a disability inclusion infrastructure throughout their organization. It is not hyperbole to say these commitments are game-changing, and are already bearing substantial positive fruit.

In the last few years, we’ve seen lawsuits, fierce advocacy, hell-raising and friend-making, and frustration to the point of hopelessness and despair, but now, the pieces seem to be coming together. There’s still a ton of work to be done, but at long last, we may have a disability community infrastructure combined with a newfound willingness from the emergency management community, which gives me hope that future response and recovery efforts will come more closely to serving all people.

Paul Timmons has residual quadriplegia as a result of Guillain-Barre syndrome and lives on St. Johns Island, South Carolina, with his wife, Kelly.

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Marcie Roth Lights Up
~ The Dark Side ~

Equally important — or arguably more important — as the role of the Red Cross in disaster relief is the role of FEMA, and there is no better example of the failures of the emergency management community to serve people with disabilities than its performance in the aftermath of Hurricane Katrina. Contrary to myth, they did not do “a hell of a job.”

In fact, they didn’t try to do any sort of job at all. FEMA was a vast wasteland of disability competency. To the best of my knowledge there was one person with the word disability in their job title, and she worked in a cubicle in the basement of the building and had no authority to do anything useful.
Longtime disability rights advocate Marcie Roth watched in horror the missteps by FEMA that caused death and suffering of people with disabilities, including a dear friend of hers. It took her a few years, but in 2009, she was placed in a position to do something about FEMA’s incompetence when she was appointed by President Obama to be the disability point-person for FEMA. And when Marcie called to tell me about her appointment, she said, “Well, I’m going over to the dark side.”

During her six-plus year tenure at FEMA, Marcie has created an Office of Disability Integration and Coordination, staffed it with subject-matter experts, created a cadre of deployable reservists, and worked diligently and with great success to develop an inclusive culture within the agency.

Once Marcie got on board, we knew we could take our concerns directly to her. Prior to that there was no one in the agency whose ass we could cut when things went sideways. Because things are going to go sideways, and you need to have a responsible person to contact who can run the problems to ground and fix them. After all, we are in the chaos business.

One of Marcie’s greatest accomplishments has been the establishment of a network of disability stakeholder partner organizations. To some extent during the California wildfires we saw the effectiveness of these partnerships, and during the South Carolina flood response, these partnerships knocked it out of the park. Although my despair in South Carolina was over the shortcoming of the Red Cross, FEMA and its stakeholder organization partners — including the National Disability Rights Network, the Pass It On Center, NCIL and our own Portlight — worked seamlessly to serve disabled people after the floods in South Carolina.

Marcie says we can expect more of the same in the coming year. “I’m seeing Portlight leading its many partnerships towards a national alliance that will really bring folks together around how we can optimize each organization’s agenda to best prepare for whatever that next emergency is going to be,” she says. “We’re particularly gratified because we’re seeing much greater interest in preparedness, much greater involvement during disasters and in optimizing the opportunities for universal accessibility and inclusion in recovery. And much more understanding of what true community resilience means and how to achieve it. What I hope to see over the coming year is continued exponential growth and a lot more engagement between disability organizations showing how they can be a resource for community preparedness.”

So Marcie was right — she did go over to the dark side. And as it turns out, she has lit it up.

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Brokering Disaster Relief

by Christy Dunaway

I was director of LIFE, Mississippi’s network of Centers for Independent Living, when Hurricane Katrina devastated the coast. After Katrina, three days went by before I was certain that LIFE’s Biloxi and Hattiesburg staff members had not perished. We lost all consumer files in the Biloxi office as well as all computers with data, and it was five days before we could contact consumers and check on their welfare.

Those of us not personally affected went to shelters to see if we could find people with disabilities, and most of the Red Cross shelters turned us away at the door. All they saw was a bunch of crips that they thought would not be able to help, and would just get in their way. We knew our abilities to serve, but they didn’t. Not then. They do now, though.

After Katrina, many of our staff enrolled in any volunteer training they could find by their local Red Cross or Salvation Army, so they would be registered and certified with those agencies and never denied access to a shelter again. About half even became certified through the Certified Emergency Response Teams, and eventually we developed partnerships with emergency managers and began to participate on the State Emergency Management Task Force.

Perhaps our largest success is the development of memoranda of understanding with NCIL, FEMA, Portlight and the American Red Cross. These benefit the disability community in several ways:

First, a formal agreement indicates that we will work together to provide quality services to individuals with disabilities in the event of a disaster. Organizationally, each entity operates quite differently, and these memoranda encourage senior administration personnel to communicate with one another to ensure that appropriate and accessible services are provided in emergency planning, response and recovery efforts.

Second, this will ensure that in the event of a disaster anywhere in the country, we can facilitate communication between the entities on a local level. For example, if senior Red Cross staff contact NCIL for assistance in locating a local CIL in an area recently affected by a tornado, we can share that information and facilitate a meeting or phone call between the emergency responders on the ground and the disability stakeholders in the area.

Third, we can assist one another in developing internal policy or crafting documents to ensure that appropriate language is used and that equal access remains the number one priority.

These memoranda allow us to begin making systemic changes in the provision of emergency management services to individuals with disabilities, and these changes will eventually filter down to the regional and local levels to impact emergency preparedness and response to our community. We believe this can save lives.[/fusion_builder_column][/fusion_builder_row][/fusion_builder_container]

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