Two winters ago, a series of events forever changed my perception and approach to weather-related emergencies. It was a cold January evening, and my spouse Armando and I had just finished dinner, when out of the blue, I was overcome by a strange sensation that I never felt before. My forehead began tingling and I had a severe headache and tingling in my arms. It was a terrifying experience and I told Armando, “I think I’m going to die tonight.” I immediately asked him to take my vitals, and I was having a hypertensive crisis and tachycardic episode. I contemplated going to the emergency room but was reluctant because of past medical trauma and bad experiences with medical ableism. Plus, it was the dead of winter and viruses like COVID and the flu were rampant. As someone with muscular dystrophy and chronic respiratory failure with 20 percent lung function, I feared getting infected in the hospital especially at a time when hospitals failed to protect vulnerable patients by not requiring masking. Getting a respiratory infection can be life threatening for me. Even though I should have gone to the hospital I opted not to. It is unconscionable that people are put in a predicament to have to make such a decision.
Instead, I had Armando connect me to my BiPAP, a machine that helps me breathe while lying down or sleeping. He put me in bed, placed my mask, and turned on my machine. Within a few minutes I started having a new symptom, my arms and legs started to shake spontaneously, I was having tremors. We continued to check my blood pressure and pulse which remained high but was slowly lowering. My body continued to shake for a couple hours but then abruptly stopped. While going through this terrifying situation there was a sudden power failure. My BiPAP machine stopped working, the heat ceased, and my house became pitch black.
Armando rushed to help me get out of bed because I felt I was suffocating without air. We stumbled in the dark and after he got me back into my wheelchair, he grabbed the blood pressure/pulse monitor to check my numbers, and they were through the roof again. He looked out the window and realized there was no power in our entire neighborhood, and it was snowing. The first thing we focused on was trying to figure out how to connect me to my BiPAP. Since I only use it while lying down or when I am sick, I usually connect directly to an outlet. I have a portable battery backup, but it doesn’t always work. I also have a small portable power station that lasts several hours. Fortunately, he found the power station rather quickly and put me back on my BiPAP.
Next, we had to decide what to do for the night as it seemed the electricity wouldn’t be returning soon because the blackout affected the whole neighborhood/block. We decided to drive to my parents’ house 45-50 minutes away. As he gathered essentials like medicine, I called my mom to tell her what happened. He loaded me into our accessible vehicle and started driving away but realized that the snow was getting heavier, the wind stronger, visibility decreasing and it was late at night. It was dangerous to drive in this weather especially with my health being unstable. We made the quick decision to go to a nearby hotel instead. It was a difficult stay since I was not doing well and could not sleep the whole night. But at least I could rest and connect my BiPAP to electricity.
Early morning, we checked out of the hotel and went home. Luckily, the power had returned. My vitals were still well above normal and upon coming home Armando transferred me into bed with my BiPAP. I remained in bed all day and continued to feel progressively worse. By now it was evening and dark outside and then it happened again, the power went out in my entire block. Armando rushed to get me up but as he was helping me, I started to feel tightness in my head and chest and had shortness of breath. We checked my numbers and I was in hypertensive crisis and having a tachycardic episode yet again and my skin was clammy. This time we called 911 while in the darkness, I was so scared. This was a nightmare scenario that many disabled and chronically ill people fear, facing a medical emergency during a blackout. When the first responders arrived, he asked them to mask before entering our house, fortunately they had masks handy and obliged. They placed me on the stretcher while Armando connected my BiPAP to the power station. As the paramedics took me outside, I was shivering since it was freezing and icy outside. They put me in the ambulance while Armando climbed in.
As I arrived at the hospital, I realized that almost everyone in the ER was unmasked, providers and patients alike, and since I could not mask because of my medical crisis, I was extremely fearful of contracting a deadly virus or infection. People have learned nothing from the pandemic and do not care about the marginalized in society. I will spare the details of my hospital visit and subsequent follow-ups but like too many experiences I had in the past as a disabled Asian American woman, I felt the ableism, dismissiveness, condescending rhetoric, and cold treatment. Medical trauma is real, distressing, and anxiety inducing. In the end after many tests and various visits we figured out what was happening and for the most part, I have these health issues currently under control.
But what came from this experience is the hyper awareness of how much I rely on electricity to live. Like many disabled people I require electrical power to live, thrive, survive. I cannot breathe while lying down without my BiPAP and cannot move without my power wheelchair. I am unable to tolerate very cold or hot temperatures since I have trouble regulating my body temperature, so heat and air conditioning are vital to living. Climate change is causing extreme weather from coast to coast with electrical outages that last for days or weeks. The reality is that a lot of people can’t survive without electricity and very few of us have a plan of what to do in this situation. It imperative that disabled people create a plan tailored to their individual needs about what to do in an emergency, ideally before one occurs. The Partnership for Inclusive Disaster Strategies has a helpful Winter Storm Checklist for Disabled People. We bought an additional portable power station after these incidents. The ultimate goal is to install a generator in our house one day. I know what important items I need to take in case we ever have to leave quickly again.
The power failed one more time during that January. We never learned the true cause of the outages but are sure it was weather related. Either the weather itself triggered the outages or there were also neighborhood rumors of slippery conditions and inclement weather causing a car to crash into a powerline. Less than two months later, we had two tornadoes in my town, one was only a mile away. This is unheard of in late winter, but climate change has made the weather unpredictable and dangerous. It was really frightening and I was extremely panicked and had debilitating anxiety. What happened to me was still fresh in my mind. We sheltered with our cat in Armando’s office since it was the only room without exterior windows. The storm was so loud that you could hear banging and slamming on the glass windows and the roof. The tornado sirens were blaring. But we were very lucky, there was no damage to our house or neighborhood, and our power stayed on.
In the past two years there have been no sustained outages. There are brief periods when the power goes out and comes back immediately and the lights flicker. But it is only a matter of time when it happens again or something even worse. In the Chicagoland area there are many storms and windy weather events. I worry about the large old trees in my neighborhood, wondering if the wind will knock them into my house as they have in other neighborhoods. Every time there is a thunderstorm, tornado watch or warning or an impending freeze, ice or snowstorm, I become severely anxious and worried. I am glued to weather reports these days.
We are living in unprecedented times where those in power are cutting funding and resources for disaster relief while simultaneously denying the existence of climate change. People are often left to fend for themselves. The implications for people with disabilities are bleak since our needs are always an afterthought. We are always left in the dark.
Grace Tsao (she/her)
Grace Tsao spent her career in higher education, non-profit, and state government working in various capacities including teaching, research, and grant writing. Grace has a B.S. in News-Editorial Journalism from the University of Illinois at Urbana-Champaign, an M.S. in Cultural Foundations of Education with a concentration in Multicultural Education from the University of Wisconsin at Milwaukee, and an M.A. in Sociology from Loyola University Chicago. She has served on the State Rehabilitation Council in Illinois and the advisory board of the Disabilities Fund at the Chicago Community Trust. She was the former Chair and Advocacy Chair of the Statewide Independent Living Council of Illinois (SILC) and is a member of SILC’s Emergency Preparedness and Advocacy advisory groups.
- Dinçer, E. (2023, March 14). A tall tower with lots of power lines next to it [Photograph]. Unsplash. https://unsplash.com/photos/a-tall-tower-with-lots-of-power-lines-next-to-it-gblBttvdXpk ↩︎
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