As the May sky darkened in Joplin, Diana Willard was getting more and more nervous. She set her “go bag” by the door.
When the tornado sirens went off, she knew it was time to leave. As her family started getting ready, Willard swooped all her medicine into the bag — without her prescription list ready — and rushed to the car.
They drove down to their friends’ house and spent at least 45 minutes in a basement, holding the door and screaming in terror. It was 2011 and a multiple-vortex tornado had struck Joplin.
“We found out I could scream louder than that tornado,” Willard recalled.
Loud noise and stress are two of the numerous conditions that can lead to epileptic seizures — one of the many invisible disabilities that Willard has.
Invisible or hidden disabilities are not immediately apparent and are usually chronic illnesses and conditions that impair daily activities and living.
“Everything of mine is internal,” Willard said. “And if you looked at the number of pills I have to take, you’d wonder how I’m walking and talking.”
Other than epilepsy, Willard has diabetes, visual impairment, serious migraines and asthma, due to being born breech with the umbilical cord wrapped around her neck and from an accident as a toddler.
Back in May 2011, as the family stood in the basement — huddled together, in fear of the house being torn apart — David Willard, her youngest son and personal care aide, said he was most scared of his mom having a seizure from the extreme stress.
Growing up in California, Willard was prepared for earthquakes, but not the sound and speed of a tornado — let alone one of the deadliest tornadoes in the U.S. since 1947.
In the years since, Willard has learned more about disasters specific to Missouri and is better prepared to respond to emergency situations.
David Willard recently reminded his mother how far she’d come, holding her hand as they sat together in their living room with their cat.
“But (now) you’re able to keep a clear head because you know the difference between a tornado watch and a warning,” he said. “And learning that difference and reminding yourself of that helps you deal with storms better now.”
Local trainings
How to prepare for tornadoes is among many topics discussed at the Emergency Management Disability Awareness training.
Those training sessions will be held in all nine highway patrol regions of Missouri throughout the next three years. The program is federally funded and held by the Missouri Developmental Disabilities Council (MoDDC) in partnership with Niagara University in New York.
“As disability rights advocates, our intent is that things get done and people have a place to turn,” said David Whalen, project director at Niagara University and disability rights advocate. His son has cerebral palsy in addition to a few invisible disabilities, such as low vision and epilepsy.
Whalen showed his son’s go bag as an example during the training in Columbia this March.
A go bag is a disaster kit that contains all the essential things someone may need in case of an emergency. It’s easy to carry and should be located in an accessible spot.
Becky Davis attended the Columbia training. She works with the Missouri Commission for the Deaf and Hard of Hearing and is deaf herself.
Through her ASL interpreter, Davis said her main takeaway from the training was to have her own plan and rely on herself in case of emergencies.
“In some situations, depending on the emergency, you might not be able to have help coming,” she said.
Taking control
Being prepared and being able to take charge of one’s own plans is very important, especially for people with disabilities, according to MoDDC executive director Vicky Davidson.
Davidson was involved in several national drill exercises and held a presentation for the International Association of Emergency Managers about emergency preparedness and disability awareness.
Davidson has been working with the council on and off since 1992, often bringing the emergency preparedness mindset and practice into her own home.
One day, she came home to see her teenage daughter’s go bag by the basement door. There’d been a storm and “it was something that clicked with her,” Davidson said.
“I felt good that she had been taking some of the information from me and taking emergency preparedness seriously,” she said. Her daughter was diagnosed with autism as an adult.
Diana Willard, too, took charge of her plan and preparedness. She has been working with a counselor to take control of her stress in emergency situations. She learned that in order to keep a clear head during storms, she needs to be able to see the trees and the weather progression.
“Nothing about us — without us”
Davidson said Missouri has done a pretty good job including people with disabilities in conversations and exercises on emergency planning and policy.
“It’s because [individuals with disabilities and their family members] bring lived experience to the table,” she said. “It goes back to the term that people in the disability community use a lot, which is ‘Nothing about us — without us.’”
Willard had been on the council even before the Joplin tornado.
“I didn’t want to see kids go through what I did,” she said. Because of her dyslexia, other disabilities and outdated educational practices, her school years weren’t the easiest.
Despite the efforts to include people with disabilities in the conversation, Valerie Novack, a disability policy researcher based at Utah State University, said a big part missing in emergency preparedness is the community connection.
“When these emergencies happen, people don’t know that there are resources out there,” she said.
The training sessions in Missouri aim to solve that issue. Usually, the second day of the training is open to the members of the community and is meant to connect first responders with the people they’ll be working with during emergencies.
The training is “bringing all of those partners together alongside the disability community to learn how to work with each other, or even know of (each others’) existence,” Davidson said.
The bigger picture
Natural disasters are becoming more prevalent.
According to the World Meteorological Organization, the number of natural disasters has increased fivefold, driven by climate change over the past 50 years.
“Part of the reason that there is advocacy towards this is because disaster after disaster we see the highest number of people that are dying are older and people with disabilities,” Novack said. “We see horrible outcomes in places like nursing homes.”
Novack estimated about 60-70% of recent deaths in natural disasters in the U.S. are among older people or those with disabilities. One in five people in the U.S. has a disability.
According to the American Association of Retired Persons, 73% of Hurricane Katrina-related deaths in the New Orleans area were among people aged 60 and over. Most of them had medical conditions and functional or sensory disabilities.
Disability awareness in emergency management and planning is a topic that goes beyond trainings. There are still many structural and policy practices that fail to be inclusive.
It comes down to a simple “don’t use the elevator in case of fire” sign. What if someone needs the elevator?
Novack said people with disabilities are not a vulnerable group of the population because of their disability, but because they are made vulnerable by lack of support and protection.
Although there are not enough policies to support people with disabilities in emergency situations, everybody around the table agrees there’s a need.
When it comes to actually making the change, suddenly there are reasons it can’t be done, Novack said.
“It’s not a priority for a lot of people,” she said.
Novack herself has an invisible disability, an autoimmune disorder. She also had a lifelong experience with severe depression.
On good days, she said, she looks fine, other times she needs a cane to walk.
“Just because I’m up and moving today doesn’t mean I wasn’t able to get out of bed yesterday,” she said.
Peace in preparedness
Having a plan of action for an emergency situation is helpful, especially for people with disabilities that often don’t have anyone else to rely on.
“There is a misnomer that just because somebody has a disability means that there’s going to be somebody there to take care of them,” MoDDC executive director Davidson said. “There’s not always going to be someone there to help.”
What keeps Diana Willard calm during storms and weather emergencies is her plan, her go bag and her shelter.
Since 2011, Willard’s go bag went through a lot of improvements. “I put toilet paper in it,” she said, laughing.
Willard also prepared a list of her medications. She didn’t have one when the Joplin tornado hit. When the pharmacies and hospitals around Joplin were wiped out, she had no access to her medication. She began to experience more seizures and difficulties with health.
“It’s majorly important that every go bag is personalized to what you need,” she said.
Some of the other things that she does is registering her shelter with a local police department, so they know where to find her, and letting them know she has a disability. She has a radio to get in touch with first responders in case of a natural disaster.
She also has two go bags — one for herself and one she takes to the council meetings as a sample.
Willard is chairperson elect of MoDDC and will start her work in June.
As far as Missouri, some disability advocates are making sure those made vulnerable are prepared. But as a nation, advocates said there’s still more work to be done.
“The world can either accept you the way that you are, or they shove you in a closet,” Willard said. “And no person deserves to live in a closet.”
