New book explores how the 2021 winter storm endangered Texans with disabilities

In 2021, Texas experienced a winter storm that shut down much of the state’s power grid for a week, leaving millions of people without heat and electricity. Hundreds lost their lives.

For Texans with disabilities, the storm offered extra challenges, and exposed the limitations of the state’s emergency preparedness system. 

Angela Frederick’s new book, “Disabled Power: A Storm, a Grid and Embodied Harm in the Age og Disaster“ features interviews with 58 Texans about how disability impacted them during the winter storm, and how their own resilience kept them going.

Frederick says some disabilities make it difficult to take measures to protect oneself from the impacts of extreme temperatures. Listen to the interview above or read the transcript below.

This transcript has been edited lightly for clarity:

NYU Press

Texas Standard: You identified a lack of home heating as a major cause of danger during the storm. Can you talk about how the lack of heat specifically impacted people with disabilities during the storms?

Angela Frederick: Yes, and I think millions of Texans still carry the trauma of having to endure for days in their own freezing homes during Winter Storm Uri. But for Texans with disabilities and chronic health conditions, there were extra layers of danger involved in enduring without heat. 

So I’ll talk about three different groups here. So first, people with chronic health conditions are often very susceptible to flare-ups of their conditions in extreme temperatures – either extreme heat or extreme cold. So people with MS, for example – people with chronic health conditions – they experience very high levels of physical pain in their freezing homes, and some lost the ability to walk and became bedridden in their homes during this disaster. 

Another group are people with spinal cord injuries. For this group, they often have difficulty regulating their own body temperatures, and some can be thrown very quickly into life-threatening medical conditions with even small changes in temperature. So this group were really in life-threatening situations. 

And then the third group – so people with disabilities are far more likely to be low income. And this places them in housing that rendered them even more vulnerable during the power outages. So they are more likely to be renters, and they’re more likely to live in older homes that are poorly weatherized.

And so for low-income Texans with disabilities, they were managing their disabilities and chronic health conditions in homes that afforded them far fewer hours of warmth and safety than people with disabilities in middle and upper-class neighborhoods.

Well, you mentioned power outages. Those were also dangerous for people who rely on medical equipment. Tell us about that – not just during the storm, but whenever these happen. 

So most people with disabilities and chronic health conditions could be classified as “power-vulnerable,” meaning they experience extra challenges during long-duration power outages. So making sure that their medicine is kept at safe temperatures, for example. 

But there’s a segment of the disability community who are power-dependent. And this group depends on electric-powered medical equipment for their very survival and movement: So for breathing, for getting in and out of their beds, for adjusting their beds, for powering their wheelchairs that offer them movement. And so for this particular group, losing power for days on end was extraordinarily challenging and even life-threatening.

So I interviewed someone, for example, who I will call Grace. And Grace only has 20% use of her lungs and she was extraordinarily prepared for a long-duration power outage, but when she got into multiple days of having gone without power for her ventilator, she finally got down to the last backup battery for the ventilator that keeps her alive.

So for this group in particular, the Texas power crisis was a life-threatening ordeal.

You spoke with disabled people, a variety of them, but some were unhoused during the storm and the people who work with them also – you interviewed them.

How did they fare? How did the unhoused people fare and were those services, that are so desperately needed, available? 

Among our unhoused neighbors, many have both psychiatric disabilities and even physical disabilities. And so this question is a very important question for the disability community.

And I interviewed someone who I’ll call Rita, who was unhoused at the time of the winter storm. And she endured the entirety of the disaster under a tent out in the elements. 

And I also interviewed people who were involved in providing services for the unhoused community in Texas during this disaster. And this is really a mixed story because it cannot be overstated how much community advocates and regular everyday community members stepped up to assist the unhoused community. They often went out into dangerous elements. They left their own personal family crises at home to assist. And so this collective care just cannot be overstated. 

But at the same time, there were huge gaps in our response systems. There were stories of chaos in certain warming shelters and the inability to meet the needs of people who were in acute mental health crises, for example.

And one of the interesting things about the story of disability and disaster is not just that disabled people are more vulnerable in disasters, but that disasters themselves create new disabilities. And we saw this in the unhoused Texas community. 

And many people who survived the disaster out in the elements experienced amputations due to severe frostbite. And so dozens of people acquired new permanent disabilities, and so they still bear the scars of the gaps in our response systems.

» GET MORE NEWS FROM AROUND THE STATE: Sign up for Texas Standard’s weekly newsletters

Also lack of access to a vehicle or transportation was another issue for some of the people you spoke with. That includes not being able to use a car to stay warm.

What did you hear about transportation issues during the storm?

The lack of access to transportation was the biggest issue for blind Texans I interviewed.

So blind Texans navigate their daily lives using public transportation and all of these systems shut down. They couldn’t access buses. They couldn’t access rideshare platforms. And so this group, in particular, had extreme difficulty evacuating their homes. 

In addition, we heard many, many stories from Texans and people will probably remember themselves retreating out periodically to their vehicles to warm up. But when you’re blind and you live alone or you live with another blind person, this group did not have that option. They did not have that backup warmth of their vehicle. 

And finally, transportation challenges extended for the blind community, far after the temperatures warmed, as people were still struggling without water. And many of the water distribution hubs are drive-thru only. And so if you think about being blind and relying on buses and rideshare platforms, well, it’s not feasible to think about taking a bus to a water distribution hub and lugging heavy jugs of water home with you and an Uber driver isn’t going to sit in line with you for hours to get water.

And so this really left people going without water for longer periods of time than their sighted neighbors or really having to rely on neighbors and friends for assistance. And by the way, these are the exact same issues that the blind community struggled with COVID drive-thru testing.

So really exposed that again – people trapped at home are unable to get out and get what they need.

Well, what is the Texas Special Needs Registry? Do you feel it’s something that works for the benefit of people with disabilities?

We call it STEAR. It’s the State of Texas Emergency Assistance Registry. And this is really the only significant investment that the state has made in including disabled people in our emergency response systems.

And STEAR is, to put it simply, a database. So disabled Texans can register annually to be part of this database and then local governments can opt into using this database for their emergency planning. 

But as I talked with disabled Texans around the state, several issues were raised regarding this program. So first, a significant proportion of people I talked to didn’t even know about STEAR. They were not registered for STEAR. 

But second, and possibly most significantly, people really felt betrayed by STEAR, and this especially came through with parents who are caring for medically fragile children because these parents felt like they had done so much legwork to protect their families for future power outages, future disasters like this. 

And so they had gone through the effort of registering every year, registering to be identified as power-dependent customers with utility companies. And then in their moment of greatest need, there was no lifeline from the state. And so the word “betrayal” just kept coming up over and over again in my interviews with parents. 

And so one thing that advocates have been calling for for years in the state of Texas is to supplement STEAR with staffing – staffing of experts who understand what inclusive emergency planning looks like and staff who can be at the table in important emergency planning conversations at both the state and the local levels to keep asking that question: What about disabled people? How did they figure into these plans?

Based on what you’ve learned, what steps do you feel should be taken in disaster preparedness to meet the needs of people with disabilities based on what they told you?

Yes, so first and foremost, we want to avoid disaster. You probably experienced Winter Storm Uri much like I did in El Paso where we had the extreme weather. We had snow, we had freezing temperatures, but we were not plunged into disaster.

And so as much as we can, we need to shore up our infrastructure so that we do not plunge people into disasters like this. And this is important for the well-being of all community members. But for disabled people, when we are talking about long-duration power outages and water outages, the stakes could not be higher.

And second, if there’s another important lesson I hope people take from my book, it is this: All will fare better in extreme weather events when we center disabled people in our emergency response planning. 

First of all, many, many community members have disabilities and chronic health conditions and their well-being matters just as much as any other community member. But also when we center disabled people in our emergency planning, we can identify vulnerability points in our planning that if we can shore up those points, we can protect all community members from failures – potential failures – in our system.

So centering disabled people in emergency planning, to me, is a win-win for the entire community.

If you found the reporting above valuable, please consider making a donation to support it here. Your gift helps pay for everything you find on texasstandard.org and KUT.org. Thanks for donating today.