Fending for Ourselves During a Crisis
Previously, I’d never thought much about how—or if—I’d survive a natural disaster.
Maybe that’s because it doesn’t feel like we’re prone to such things here in Chicago. We don’t have hurricanes or wildfires. (OK, there was a historically huge fire here in 1871, but that was only once, so I write it off as a fluke.) And tornadoes usually don’t come this way.
I suppose there’s a good chance we’ll be hit again by a large blizzard someday, but it’d have to be one helluva storm to overwhelm Chicago. We like to think that we’re prepared to handle any conceivable snow scenario. But with all the ways the climate has been acting ornery lately, all bets are off.
If such a terrible thing ever happened, it could disrupt my life significantly. I use a motorized wheelchair to get around, and I rely on a team of people to come to my home and help me do the things that everyone has to do every day, such as climbing in and out of bed and getting dressed. I call them my pit crew.
But what would happen if they couldn’t make it to my home because of a blizzard? I’d be stuck in bed. I like to think I’ve built an ironclad support network to get me through anything, no matter what. But the truth is that my life is a delicate house of cards. If anyone on my pit crew doesn’t show up to do their job as scheduled, my day comes to an abrupt halt.
A lot of disabled folks who’ve been victims of natural disasters have found themselves abandoned by emergency response systems. It sure seems like these problems could be avoided with a little more planning and forethought when these systems are designed.
The National Council on Disability (NCD) is an independent federal agency that provides advice to the President, Congress, and executive branch agencies to advance policies promoting the Americans with Disabilities Act (ADA). One way the NCD fulfills this mission is by issuing heavily researched reports with recommendations for action, such as one from 2023 titled “The Impacts of Extreme Weather Events on People with Disabilities.”
“In the United States,” the report notes, “weather-related events are happening more often: breaking records, claiming lives, and costing billions of dollars.” It points out that 2020, 2021, and 2022 were the top three years with the most billion-dollar climate events in U.S. history. Of course, additional climate disasters have happened since then, including Hurricanes Helene and Milton.
The report also discusses the 2017 California wildfire season, during which 9,270 fires caused $12 billion in damages, displaced more than 100,000 people, and claimed forty-seven lives. Under these circumstances, “professional caregivers were ordered to evacuate and unable to work.”
I’d be screwed if my pit crew had to evacuate—just like, I’d imagine, the disabled folks in that fire region were. Even if I was ready and willing to evacuate, could I? Would the vehicles dispatched by rescue planners to transport survivors out of harm’s way be wheelchair accessible? Would the shelters where we’d likely be taken be accessible? If so, who’d be there to do all the things my pit crew does for me?
What if I were evacuated to another state? That would present a unique challenge due to the lack of national continuity for public support programs that people like me rely on to survive. For instance, my pit crew’s wages are paid by a state program largely funded by Medicaid. But this program is optional, so availability, quality, and eligibility vary greatly from state to state. When someone receiving Medicaid in one state relocates to another, their eligibility doesn’t automatically move with them. They’ll probably have to reapply for Medicaid.
What if the electricity goes out for a prolonged period of time? According to a study by Angela Frederick of the University of Texas at El Paso, which examined the impact of Winter Storm Uri on people with disabilities in Texas, more than four million households lost power after the storm, some for more than a week.
“The crisis generated by the loss of power was particularly acute for those who rely on durable medical equipment, such as powered wheelchairs, oxygen tanks, ventilators, and powered hospital beds,” Frederick writes.
The study highlights several people with disabilities who were affected by the storm. One of them, Grace, uses a ventilator to help her breathe. Because of that, she and her husband “had done all they could to prepare for the possibility of an extended power outage.” But even their best-laid plans failed when their generator locked up due to the extreme cold, and Grace had to use all of her emergency batteries to keep her ventilator running. She said the experience left her with post-traumatic stress disorder.
I’m in that same leaky boat. I don’t use a ventilator, but I do use a sleep apnea machine at night. Its battery keeps it running for a few hours, but that’s about it. I charge my motorized wheelchair battery every night while I sleep so that it’ll have enough power to get me through the next day. I don’t have a generator, but I don’t even know where I’d put one if I did, because I live in a high-rise condominium.
I fear that if I’m ever caught in an extreme weather event that requires me to seek help beyond my usual support network, I’ll be left to fend for myself.
After disasters like Hurricane Irene and then Sandy, the Brooklyn Center for Independence of the Disabled joined a group of disabled folks in suing the City of New York for its failure to incorporate the unique needs of people with disabilities into its emergency and disaster response planning. The plaintiffs claimed that, due to this lack of preparation, many disabled people were trapped by the storms in high-rise apartments. In 2013, a federal judge agreed with them and ruled in their favor.
Worse than all of this, I fear I’ll be banished to some stinkin’ nursing home. The NCD report reminds everyone that “disability rights laws protect against people with disabilities . . . being placed in long-term care facilities.” However, it also notes that state governments can—and do—petition the Department of Health and Human Services (HHS) to grant them waivers so that they can ignore these laws and institutionalize disabled people during emergencies.
Thus, one of the many NCD policy recommendations in the report is that HHS should never again issue waivers permitting people with disabilities to be institutionalized “in the absence of accessible shelters and services.”
The NCD also recommends that Congress pass a law enabling Medicaid recipients who are disabled to retain their eligibility when they’re displaced to another state by an emergency.
“People with disabilities will continue to be disproportionately impacted by extreme weather events unless emergency planners address the specific needs and include people with disabilities in all emergency management activities,” the report says.
But it doesn’t seem like that’s happening. Disability Rights Texas recently provided legal representation to disabled people who filed a federal lawsuit in 2023 against the City of San Antonio, alleging that the city’s emergency planning “continues to leave its residents with disabilities out in the cold.” It outlines how Winter Storm Uri disrupted the lives of Texans with disabilities in many of the same ways that are mentioned above. It also says that much of this disruption could’ve been avoided if the city had considered accessibility and all of its facets during emergency planning.
San Antonio amended its emergency planning after that devastating storm, but the changes did nothing to improve access to safety for people with disabilities, according to the complaint. All of this, the complaint adds, violates Title II of the ADA, which prohibits discrimination on the basis of disability in the provision of services by state and local governments.
The lawsuit asks the court not only to require the city to amend its emergency planning to accommodate the needs of people with disabilities, but also to have a full-time employee in its emergency management department who has the responsibility of “ensuring inclusive planning for the needs of individuals with disabilities.”
It’s safe to say that there are disabled people in every jurisdiction. As weather extremes get weirder every year, it’s increasingly important for those who design and implement emergency response plans to ensure that they meet everyone’s needs.