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As many as one in four U.S. residents live with a disability, increasing their risk of injury or death from climate-driven disasters. Yet disaster planning efforts have largely failed to account for the needs of those with greater physical or cognitive challenges.
In February 2021, a blisteringly cold storm system crossing the Arctic from Siberia slid over the U.S. Plains and deep into Texas. Although forecasters started highlighting the dangers of the polar vortex as early as February 5, Texas utilities and energy providers were quickly overwhelmed. Gas plants and wind turbines alike froze in place. Grid operators called on utilities around the state to “shed” load as they came minutes away from a total grid failure that could have lasted months. Power outages impacted millions of residents for days on end as local governments struggled to respond. Hundreds died.
State energy planners were not the only ones found wanting. In San Antonio, the City-owned utility struggled with its power plants, with both coal and nuclear plants failing, followed by a clumsy disaster response. In spite of a very similar event striking the state a mere decade earlier, San Antonio’s 2015 Hazard Mitigation Plan—its most recent update at the time—still had winter storms ranked as “highly likely” but only “minor” is potential severity.
Those with disabilities—including reliance upon home medical devices and human caregivers—were particularly at risk. Could a bill pending in the Texas Legislature’s calendars committee change that?
“Right now your disabled community is dying,” Ralph Garcia told Deceleration during the 2021 storm as his power cycled on and off for hours at a time. It was a message he directed at grid operators, city mayors, and Governor Greg Abbott.
Garcia, who lives with with spinal muscular atrophy, a form of muscular dystrophy, relies on a range of home medical devices rendered inoperable for long blocks of time during Uri. He said recently that did not expect to survive the disaster.
Nicholas DeFosset and Teresa Maguire, housemates with quadriplegia who both rely on powered wheelchairs, lifts, and daily attention from human caretakers, lost their power like Garcia—and hundreds of thousands of others across San Antonio after Uri struck. Their outage lasted four days with no way to evacuate. When desperation set in, Maguire called 911. But, according to a lawsuit filed in January, they were told that “no ambulance or other care was available.”
It’s unclear where they would have evacuated to, as San Antonio’s shelters are also not equipped to care for residents with special needs, according to the City’s Emergency Management Plan, as the lawsuit points out. DeFosset and Maguire complain that they never received any information from the City about how to survive a disaster without power or create a personal care plan for such events based upon their disabilities.
The lawsuit filed in federal court and joined by nine San Antonio residents, all with some form of disability, charges the City with discrimination under the Americans with Disabilities Act of 1990.
“[T]he City of San Antonio discriminates against people with disabilities by denying equitable opportunities, outcomes, or even consideration in disaster and emergency planning, response, and recovery programs, services, and activities,” the lawsuit reads. “Although the City has an emergency plan for the majority of its residents, it has continually failed to adequately plan to meet the needs of the hundreds of thousands of residents with disabilities.”
Researchers who have been exploring the relationships between disasters and social vulnerability have long highlighted disproportionate burdens borne by communities of color. A growing body of work is now showing a similar burden on those with cognitive and physical disabilities.
“We knew before [2021’s Winter Storm] Uri that people with disabilities were doing to die at a higher rate—and they did,” said Laura Stough, professor emerita at Texas A&M University and founder of Project REDD (Research and Evaluation on Disability and Disaster). “We know this before a disaster even occurs. So if we know this, why aren’t we solving that problem?”
It’s true that people living with disabilities suffered through 2021’s Winter Storm Uri in ways not dissimilar from how people living with disabilities experienced Hurricane Harvey in Houston or during Superstorm Sandy in New York—or any number of similar disasters where emergency management plans failed to consider the range of needs within their most impacted communities. Decades after passage of the ADA, folks with disabilities are frequently still not included in sheltering or evacuation plans, advocates charge.
While it is not yet known if disabled Texas residents died at rates beyond those of non-disabled population, it is highly likely. There remains a significant disparity between the state of Texas’s accounting for those who perished as a result of the storm and independent reporting that has found much higher numbers. Researchers with the University of Texas at El Paso and University of Utah have perhaps best quantified the disparity by reporting that disabled residents in Texas after Uri suffered more hours without power, on average, than those without disabilities, as well as experiencing lower indoor temperatures and longer water-related advisories.
Dr. Lisa I. Iezzoni at Massachusetts General Hospital and Harvard University has been a wheelchair user for 35 years. She described the disparities baked into disaster impacts this way:
“The basic world is not structured for us. When that world is put topsy-turvey so it’s not habitable for other people, it’s probably even less so for us.”
Stough, now professor emerita at Texas A&M University, had been studying disability-related issues for many years when Hurricane Katrina struck in 2005. She first became aware of how disaster impacts people with disabilities as a volunteer helping Katrina victims inside the Austin Convention Center. “I’d never in all my career thought about emergency preparedness when someone with blindness or an intellectual disability experiences a disaster,” Stough said.
Inside, she observed a group with intellectual disabilities struggling to navigate complex care networks without the home supervisor they relied upon. Others were separated from their motorized wheelchairs and stranded painfully in place. Volunteers demanded driver’s licenses from obviously visually impaired storm victims. The same sort of failures and oversights permeate many disaster plans, she said.
“We have put in place our evacuation and preparedness plans very often in ways that are able-body normalized. We think that people can run or climb through windows or crouch underneath a table or hear a siren,” Stough said.
“Where other groups received attention much earlier: mothers, the elderly, veterans, disability has received less attention and less response, yet the issues are very familiar.”
Though disability and disasters were largely absent from academic research to that point, Katrina inspired a new field of study that quickly began to highlight, for instance, failings across Gulf South states receiving Katrina evacuees. Shelters were inaccessible, including entrances and exits, but also “toilets, showers, cots, and public communications.”
Texas is a land known for its unpredictable and often violent weather. Risks to residents are growing as large-scale weather-related disasters increase in size and severity with the warming of the planet, primarily due to the continued use of fossil fuels. And while millions of Texans live with one or more disability, putting them at heightened risk, not enough has been done to meet their needs in disasters, critics charge.
“The Texas Division of Emergency Management does not have a disability inclusion director,” Stough said. “So there is nowhere in the division of emergency management in Texas a go-to person who is knowledgeable about disability needs, who knows disability networks. Other states, even other towns, have a disability inclusion person.”
“Different disability groups have advocated to the state that this is a really important need given we’re a huge state and we’re disastered all the time and the division of emergency management has chosen not to do that repeatedly,” she added.
As Deceleration wrote at the time, residents of Fair Avenue Apartments—a San Antonio Housing Authority complex on SA’s Southside where a majority of residents are elderly, disabled, and living on fixed incomes—were among those hardest hit by the loss of power and water. Lack of preparation and delayed responses by SAHA and City leadership left residents feeling, as many commented later to television news, that they had been “left to die.”
Disability advocates started their post-Uri campaign for inclusive planning before the Public Utility Commission of Texas. Their suite of recommendations delivered in July 2021, however, were rejected.
“Basically, the PUC was like, ‘It’s outside of the scope of this project’ and ‘We’ll address it in another one.’ But the other one never came to fruition,” said Stephanie Duke, the designated disaster resilience coordinator for the advocacy organization Disability Rights Texas. Much of the discussion was about the utility operators and restoring power. But disability advocates were interested in integrating utility behaviors with local communities. “From our perspective it wasn’t just [utilities] having their own plan, but it was the integration with local jurisdictions so if the power does go out there’s communication and there’s data and all of this collaboration going on,” Duke said.
More than a year and a half later, the Governor’s Committee on People with Disabilities released its 75-page list of policy recommendations to the incoming 88th Texas Legislature.
“Over the last ten years, Texas has experienced thirteen FEMA IA disasters. A total of 334 counties were impacted as a result,” the report authors state. “After the February 2021 Winter Storm, a broad coalition of Texas cross-disability organizations came together to study the most effective ways to support people with critical power needs during a disaster who depend on electricity to power life-sustaining DME [durable medical equipment].”
High on the list of disaster recommendations is the need for better data collection for coordination with the disability community. And, honestly, there is a range of preexisting datasets emergency responders could draw upon to understand which homes are reliant on power for ventilators, oxygen, or powered wheelchairs, for instance. The EmPOWER Program data at the U.S. Department of Health and Human Services includes includes a wealth of data, including contact information, home addresses, beneficiaries, as well as powered devices in use, Duke said. “There’s all kinds of data out there now. Even county records, disability homestead exemptions; para transit rosters, even Big Data could be useful at this point.”
And yet in spite of all of this advocacy, including from the Governor’s own task force, it’s unclear what, if anything, may come out of the Legislature. Hopes are now that a bill carried by a Houston Democrat can muscle through some reforms.
HB2858 would require the state’s disaster planning plan for the needs of the disability community by requiring “inclusive disaster and emergency planning practices at all levels of government.” It would explicitly direct emergency shelter operators to be able to shelter and care for those with disabilities—both in the short- and long-term—and establish plans for “wellness checks” during disasters, as well as make improvements in emergency communication by mandating both in audio and visual formats be used, as well as generating “surge capacity” to respond to the particular needs of people with disabilities during crisis.
“There is long-standing research that shows that individuals with disabilities are often excluded or not considered during disaster planning, leaving gaps in services for this population,” Crystal Goodwin told the Texas House Committee on State Affairs in April. Goodwin, a disability integration specialist for the Texas Council for Developmental Disabilities (TCDD), said the bill would “close current gaps in disaster planning to become more inclusive of all Texans.”
Bill author, Rep. Penny Morales Shaw, D-Houston, did not respond to calls seeking comment. And while the bill is low of specificity as to how these reforms would be enacted at the local level, Duke said that may be by design. That the most important thing is for emergency management teams to be coordinating to meet the unique needs within every community.
In San Antonio, it’s clear that some efforts were in motion prior to the 2021 winter storm. Minutes from a 2018 community meeting dedicated to developing a “Whole Community” disaster response plan to incorporate the disability community discusses improving accessibly of the AlertSA emergency notification system, new contracts for American Sign Language (ASL) for video notifications. There’s even a note that staff from the City’s Disability Access Office “has been contacting with other cities to learn about their emergency planning.” However, as the lawsuit states, no modifications to the plan have been made since 2016.
A spokesperson for the City of San Antonio responded to questions about the lawsuit with the following statement:
The City is committed to providing accessible resources to all of its residents during emergencies and did so to the greatest extent practicable during Winter Storm Uri. Following Winter Storm Uri—an unprecedented weather crisis in San Antonio—the City has undertaken significant effort to identify areas to improve its emergency management and has engaged community stakeholders and industry experts in that process, which remains ongoing. The City recognizes there is always opportunity for improvement and is committed to advancing its plans and processes to support its residents during emergencies and disasters.
San Antonio’s disaster committee, which included several City Council members, issued a report in June 2021 highlighting local and state failures marking 24 recommendations for improvement. While the suffering of “medically vulnerable” residents was noted in the paper’s concluding pages, none of the recommendations specifically addressed avoiding such inequitable impacts in the future.
Though not a party to the lawsuit against the City of San Antonio, Ralph Garcia, who relies on electricity for a range of daily treatments, including nebulizers, a feeding device, and suction and cough assistance machines, said that not only did his family suffer from outages and lack of communication from the City after the winter storm but that they have had their power cut off twice for their inability to keep up with their bills. City-owned CPS Energy has a Critical Care Program that helps people who rely on home medical devices keep up with their bills, it does not guarantee uninterrupted electric or gas service.
Dr. Iezzoni—who is aware firsthand of how even seemingly mild weather events, including a half of inch of snowfall, can disrupt the lives of those reliant on powered wheelchairs—said that access to electricity should be a fundamental human right.”
“We function differently in the world on an average day, so if a day is no longer average because there’s a tornado or mudslide or whatever, it becomes even more complicated,” Iezzoni said.
Yasmin Voglewede, who lives with a condition known as arthrogrypposis multiplex congenita, a condition impacting her arms and legs that makes it impossible to walk, dress, or get in and out of bed, suffered five days without power during the 2021 winter storm in San Antonio, according to the lawsuit. Although Disability Rights Texas did not make any of the plaintiffs available for an interview, Voglewede, an attorney herself, posted on her Facebook page during the storm:
“You should know that there are hundreds of disabled and elderly people here in San Antonio and around Texas who currently do not have help because of this storm. Many Home health agencies have instructed their people not to travel including my own, which leaves these people vulnerable and left to fend for themselves.
“I’m telling you this because I am fortunate enough to have a wonderful person who has braved this weather to make sure I am safe and warm. She does this out of the kindness of her heart, even though she gets paid very little and is unappreciated by the agency that hired her. But many others are not that fortunate.”
San Antonio shelters, the lawsuit charges, are not prepared to meet the needs of people with disabilities—or, in the language of the City’s own emergency plan, “functional needs groups.” These are defined as “elderly, medically fragile, mentally and/or physically challenged or [disabilities], individuals with mental illness, and people with developmental delays.”
In 2017, more than 15 percent of San Antonio residents—232,627, in all—self-identified as having one or more disabilities. That includes 60,000 who are deaf or hard of hearing, 75,000 with a vision disability, over 87,000 with a cognitive impairment, and more than 100,000 with an ambulatory disability. Nationally, the U.S. Centers for Disease Control estimates that as many as 25 percent of the population lives with some form of disability.
“San Antonio talked about how in 2018 we had this great new plan and ‘We did outreach.’ Well, I’m sorry. Checking a box and inviting people to a town hall doesn’t obfuscate your responsibility for inclusive planning,” said Duke from Disability Rights Texas, who is working alongside the Dallas-based civil rights law firm of Daniel and Beshara on the San Antonio lawsuit.
She said she worked for a year to engage the City in a mediation process to resolve the suit’s claims while avoiding a lawsuit, she said she doesn’t put much stock in the City’s “Whole Community” process. “They sent an email saying, ‘Well, we invited these 40 organizations.’ Well, where is the follow up? Did they actually come and participate and did you actively engage with them after that?”
The lawsuit asks the judge to declare the City in violation of Title II of the Americans with Disabilities Act and require a string of reforms, including “meaningful modifications” to the City’s risk assessments, modeling of disaster impact on persons with disabilities, and appropriately modify disaster planning in the areas of emergency sheltering operations, evacuations, energy for sheltering-in-place, food and water distribution, and emergency communications. It also calls for creation of a full-time employee within the Emergency Management departments dedicated to “inclusive planning for the needs of individuals with disabilities,” among other measures, in addition to “nominal damages” for the plaintiffs and attorney fees.
Barring state action this legislative session, disaster response in Texas, where local jurisdictions take the lead in disaster response, will remain patchwork.
Duke said advocates lobbied the Public Utility Commission of Texas to adopt policies more protective of those with disabilities but was told it was beyond the purview of the agency.
“Because the PUC is not doing what we think we should then, OK, the local jurisdictions need to look at data sources to figure out how many people in their jurisdictions they might have that are power dependent—ventilators, oxygen, whatever those things are—and then come up with alternatives when those things are disrupted.”
Angela Frederick, a professor of sociology at the University of Texas at El Paso, interviewed nearly 50 Texas residents with disabilities and six nondisabled parents caring for children with disabilities about their experience in the storm and its aftermath. She said such planning will continue to fall short until leaders from within the disability communities themselves are invited in to lead the conversations about emergency management practices.
“Emergency policies will inevitably fall short when guided by outdated assumptions about disability,” Frederick said. “Leaders in specific disability communities have the most nuanced knowledge of where disabled people live, how they manage their daily lives, and what challenges they are likely to face in a disaster.”
In 2013, a class-action lawsuit in New York City led to a six-day bench trial to determine if New York City and then Mayor Michael Bloomberg has discriminated against disabled residents in their storm emergency planning. It was, as National Public Radio noted at the time, only the third lawsuit of its kind in the nation “and the first to got to trial.” Federal District Court Judge Jesse Furman noted the “Herculean task” that is disaster planning and response, adding that the “mountain of evidence” provided during the trial showed that the city had done largely an excellent job—and yet had still failed residents with disabilities. The two sides entered into a comprehensive settlement agreement to develop necessary reforms.
“It was clear the City of New York had completely neglected this aspect of evacuation. At the most basic, shelters were inaccessible: if you were in a wheelchair, you couldn’t get in; if you were blind, you couldn’t get around,” said Joe Rappaport, executive director of the Brooklyn Center for Independence of Disabled, that brought that NYC lawsuit with Disability Rights Advocates.
“There’s been a huge amount of work after our settlement to make shelters accessible.”
Those with disabilities, so long neglected in academia and public policy in spite of advances in civil-rights case law, are “the proverbial canary in the coal mine,” he said. “In a disaster they are the first people who are hit. Our view is that if you are neglecting people with disabilities chances are you are also not helping people in an emergency who may not have disabilities. If you’re not looking out for everybody you are not doing your job.”
New York hasn’t seen a large-scale evacuation since Superstorm Sandy.
“There’s been a lot done by this city,” Rappaport said. “What happens in practice is always a different question. I think that’s the concern. We tried really hard to get procedures in place and for people to get the kind of training they want. It’s hard to know how that will play out.”
Back in Texas, the question will be how to advance if the Legislature fails to demand even basic reforms of emergency responders and local communities.
“I think we have to have a better game plan if it doesn’t get anywhere this session,” Duke said. “Because I think it’s something a lot of people can agree on. Yes this is something we need to do. It doesn’t matter what side of the aisle you’re on.”
Greg Harman is the founder and co-editor of Deceleration.
Photographer B. Kay Richter is a native of San Antonio. She attended Texas State University – San Marcos where she studied journalism and history. She has been a reporter for several community newspapers in south and central Texas. She is now based between the states of Missouri and Arkansas.