Disability and Disaster Response in the Age of Climate Change

It's been a year of catastrophic weather. Meet the people working to fix America's disability disaster response.
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Brad Matheney offers help to a man in a wheelchair while Hurricane Harvey passes through Galveston, Texas, on August 26th, 2017.

Brad Matheney offers help to a man in a wheelchair while Hurricane Harvey passes through Galveston, Texas, on August 26th, 2017.

Throughout the morning of Sunday, August 27th, Angela Wrigglesworth kept her concerns off social media because she didn't want to worry her parents. But as the waters slowly rose into her Brays Bayou home in Houston, she discovered that emergency services were overwhelmed, dealing with more urgent crises than even the flooding in her neighborhood. Finally, a little after noon, she posted on Facebook: "There is water in our home and we need to get out at some point soon. ... If you know of anyone in the Brays Bayou area that has access to a raft or boat or is helping with rescue in anyway, can you please let them know of our situation? It may be that we need a good Samaritan to step in at this point."

Wrigglesworth has muscular dystrophy and uses a power wheelchair. She teaches third grade in Houston. When we talk, she describes herself as having "high medical needs," emphasizing how severe a threat rising water would be. She can't move through space independently without her wheelchair. She can't swim. She can't climb. Still, she and her boyfriend had decided not to evacuate, in part because her home was likely more accessible than any shelter. Moreover, no one else in her area was evacuating. No one had ever heard of her part of town flooding. And then it flooded.

Six hours and hundreds of phone calls, social media threads, emails, text messages, and other acts of networking later, a friend and two former marines showed up at her door with a red Bass Tracker Pro 170 boat. The three had traveled across the Houston area through horrific conditions to get to them. A few weeks after the incident, Wrigglesworth tells me on the phone: "My boyfriend and a friend transferred me into the boat. They picked up my 400-pound wheelchair and put it at the front of the boat; my big old hound dog and our kitty cat in a crate, and Justin [her boyfriend], we got in this boat." The rescuers waded through the water to pull the boat to their truck, loaded it onto a lift, and towed everyone safely downtown to a hotel.

At one point, Wrigglesworth started to wonder why the owner of the boat was willing to go to such incredible efforts to rescue her. She tells me, "As they pulled us to safety, I asked, 'How do you know my friend?'" The Marine responded: "Well, we've been dating for four days."

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I spent the late summer and fall of 2017 watching the disability community respond to disaster after disaster. The efforts have included state, local, and federal governmental efforts and professional non-profit operations, but also the kind of community- and volunteer-based efforts of the sort that saved Angela Wrigglesworth. At their best, the responses combine the resources of both formal and informal networks to create resilient systems of protection and response for disabled people in the wake of disasters. When systems fail, people die.

There are four basic different types of needs related to disability that emerge in the aftermath of disasters: health maintenance (medicine, electricity, medical care), ability to move in and through physical areas, effective communication access, and what the experts call "program access." Some of these needs are obvious: People who depend on dialysis or oxygen need power. Diabetics need insulin. Chemotherapy patients need hospitals that work, and so forth. A wheelchair user might well not be able to cross flooded areas, climb stairs to escape rising water, or access a shelter. Shelter space might also be inaccessible because messages about locations aren't communicated in sign language or Braille. Such spaces might be too loud or chaotic for people with sensory integration needs (as would be true for my son, who has Down syndrome, many autistic individuals, and many others).

Needs can overlap. Many people fall into more than one of these categories, and access to the resources required to meet these needs is never distributed evenly. The consequences of a natural disaster for any individual will be intensified not only by specifics of the disability, but also by other forms of inequality and marginalization such as race, class, gender or sexual identity, and legal status. Disabilities can also be temporary or changing, especially when disasters bring injury or new health risks. Disability disaster response therefore requires understanding all the varieties of disabilities and the inequities of our society—and too often requires fighting against governmental structures built without disability in mind.

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For the people engaged full-time in inclusive disaster response, the crises have begun to bleed into each other and are far from over. I began writing this piece about a week after Hurricane Harvey hit Texas. Those interviews all began with lessons learned and lingering traumas from Hurricanes Katrina, Andrew, or other disasters. At the time, everyone responding to Harvey was also worried about Irma, then bearing down on Florida. As I was gathering information about responses and disability-related crises (and deaths) linked to Irma, Hurricane Maria hit Puerto Rico. There, the lack of power and clean water is killing and otherwise harming vulnerable people every day. In our hot new world, where extreme weather has become increasingly routine, the stakes of building resilient and fully inclusive systems couldn't be higher. Instead, resources are becoming strained. "We're depending on the kindness of strangers," Marcie Roth tells me over the phone. "And we're very fortunate. There have been a surprising number of kind strangers." Yet kindness, like all other resources, turns out to have its limits.

Roth started working on inclusive disaster response after 9/11, when she learned that security precautions were keeping personal care attendants and paratransit out of Ground Zero. Disabled folks living inside the cordoned-off area weren't getting their needs met. "It was a really pivotal 'aha' moment," she tells me over the phone. By 2009, Roth had a high-enough profile in disaster response to be invited by President Barack Obama to start a new inclusive response team at the Federal Emergency Management Agency, and now she's chief executive of the Partnership for Inclusive Disaster Strategies.

Donated wheelchairs for survivors of Hurricane Harvey.

Donated wheelchairs for survivors of Hurricane Harvey.

I found this kind of "origin story," where a specific crisis propelled a disability rights activist into the disaster response world, fairly typical. Paul Timmons, chief executive officer of Portlight Inclusive Disaster Strategies, told Pacific Standard in August that his start came after he was alerted to abandoned mobility devices at the New Orleans airport following Katrina. Shelley Hendrix, the founder of Unlocking Autism, started figuring out ways to support people with autism and their families, she tells me over the phone, after "we had six inches of black water" erupting from the sewer into her house after Katrina. They didn't have water for over four months after that, and bartered their electricity, which was on, for water access with neighbors who had no power.

These origin stories also clarify the enduring traumas that disasters leave behind. Hendrix's voice was tight as she told me about Katrina, but more relaxed than in the previous call. The first time we spoke, she was watching Irma's progress, worried both about the lone "spaghetti strand" of possible paths that sent it toward their home in Louisiana, and about the well-being of a friend in Miami and her two autistic teenage sons.

Maria Town, director of the Mayor's Office for People With Disabilities in Houston, has been dealing with the aftermath of hurricanes her whole life, including when Hurricane Katrina led to the death of her grandmother. That storm hit on the day in 2005 Town went to start college at Emory University, in Atlanta. Over the phone, Town tells me about her grandmother's death (from cancer, but also from stress and grief over other deaths in the family) and a letter she received weeks later: "My grandmother used to write me letters all the time," she says. "After she died, I remember standing in the mail room [at Emory] and opening my P.O. box and seeing a letter from her that she'd written as the storm was hitting, and that she forced my uncle to go out and mail. The mail was delayed, and she knew that, and she said it in the letter."

There's a pause in our phone call at this point, as Town collects herself, then lays out the challenges. "For a person with disabilities, things can get really hard because you might be flooded, your PCA [personal care attendant] might get flooded, or your cousin who has come in to help out might have had to evacuate." People with disabilities rely, she explains, on complex systems, formal and informal, public and private. When disaster strikes, people volunteer and send aid. But rebuilding disability systems takes months and years, with recovery continuing long after public attention fades. If the formal systems don't stay inclusive, the informal ones certainly won't.

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Marcie Roth repeatedly emphasizes two points. First, inclusive disaster response is good for the whole community, not just for disabled individuals. Inclusive disaster responses are resilient systems. Disabled people, she says, "need physical access, program access, and effective communication access." She says that, if you build emergency response systems with these needs in mind, you will just generally have better emergency response systems.

This rarely happens. Instead, Roth tells me, pre-existing inequities in access get magnified during disasters. "It's the antithesis of what should be happening," Roth says. "We need to be at the top of our game in servicing people who require more physical assistance, more program assistance, more financial assistance." She ticks off scenarios. "If there's no accessible housing and I'm stuck in a shelter, I'm going to be stuck in a shelter until there's accessible housing." If kids can't go back to a school with disability resources, she continues, "then I can't go back to work, and we remain dependent on public systems." Communities cannot be made whole, of course, until everyone is in a home, back at work, kids at school, and supports fully in place.

"From a business perspective," Roth says, "it would be far smarter to be all-in on making sure that people with disabilities can get back to our lives. It's also the right thing to do."

Roth's second point is that federal systems often preclude this kind of inclusive response for a simple reason: There's no money to support the real experts, i.e. disabled people in affected communities. For example, she tells me, every time there's a disaster, the network of Independent Living centers swings into action. These are local, state, and national organizations that work to support disability rights and independence across countless communities. They are ideally positioned for disaster response, especially given the overarching concern that disabled people will be institutionalized after disasters. They receive federal funding, however, and all federal dollars have specific limitations for what they can be spent on. What this means, Roth tells me, is that "everybody else"—i.e. state, local, and federal relief organizations—"is getting paid to do this work." Roth would like to see widespread federal investment in local disability rights organizations, to help them join community preparedness teams and disaster recovery teams. In the meantime, the disability world is doing an extraordinary amount of work through small pots of discretionary dollars, donations, non-federally funded organizations like Portlight and the Partnership for Inclusive Disaster Strategies, and volunteers.

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In the meantime, those volunteers have been saving lives and softening trauma. As the floodwaters rose this autumn, informal networks helped direct people with boats, like the Cajun Navy or the fellow who collected Wrigglesworth in the Bass Tracker, toward people in need of rescue. After the first wave of emergencies, though, recovery tends to take a long time. I've been following Maria Town and her office coordinating mass distribution of mobility devices (wheelchairs, walkers, canes) in Houston and beyond ever since early September. Shelley Hendrix helps teach people who run shelters to get people with autism and other sensory needs into quiet spaces. She also raises money to distribute weighted blankets (often calming for people with autism) and small gift cards to Walmart or similar stores. Her hope is that, by keeping her families out of the chaos of a shelter floor, and then providing them with a few resources to get back on their feet, she can help everyone get through the dislocation a little more easily.

During the floods, social media made rescues possible. Now social media is a vector for targeting donations and relief. The artist Jill Jacobs has become a node in the informal networks of aid, expertise, and donations: Over Facebook and phone calls, she's helped coordinate boats for rescues, plus Amazon wish lists to buy school supplies for children in cases where the family is displaced and either the child, parent, or both are disabled. When Hurricane Maria hit, Jacobs started figuring out how to charter planes, and eventually collaborated with television personality Bethenny Frankel to bring oxygen to Puerto Ricans in need. On a typical day, Jacobs tells me, she's "mostly in my pajamas or in paint-covered clothes with fucked up hair." For now, though, there's just too much work to do. Even as I wrote this paragraph, she messaged me about a new campaign to bring disabled folks from Puerto Rico to New York.

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The scope of the disability community's disaster response network is vast and includes hundreds, if not thousands, of disabled individuals, family members, professional disaster responders (many of whom are disabled themselves), and more. The few voices I've highlighted here are prominent and effective, but far from alone.

Still, the gaps are evident, and deadly. A nursing home in Galveston, Texas, was captured on camera with flood waters up to the waists of elderly folks in wheelchairs in August. As terrifying as that experience must have been, it could have been worse: A few weeks later, a nursing home in Florida lost power during Irma. Fourteen residents died from the heat, some lingering for weeks with complications from the natural disaster and subsequent human failure. Florida's nursing home industry has been largely de-regulated by Governor Rick Scott. Deaf individuals in Puerto Rico remain cut off from relief. Disabled and poor Puerto Ricans who depend on electricity for survival remain vulnerable, or have already succumbed. In California, deaf residents of Sonoma were often not alerted to the urgent fire threat because current systems rely on phone calls and sirens. One 28-year-old wheelchair user, Christina Hanson, died in the fires.

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Toward the end of my long phone call with Angela Wrigglesworth, I ask her about the lessons of this hurricane season. She reflects for a bit about the vast chain of people, both in Houston and spread across the country, who helped get her onto that boat. She's proudly independent, but recognizes that her independence is fostered by community. She says: "As a person with a disability, I require the help of so many people. It takes a village to make my life work. ... We're going to have to help each other."

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