Nothing About Us Without Us:

During Winter Storm Fern, some Tennesseans lost power for about 13 days.

A storm like that can quickly turn a normal week into a crisis. Food spoils. Phone batteries die. Heat may stop working. A medical device that needs power suddenly has none. Dr. Paul Petersen says a long outage can take someone with disabilities who is usually independent and "really disrupt their lives to a point where they can't handle things by themselves." Paul directs the Emergency Preparedness Program at the Tennessee Department of Health, where he has worked for almost 21 years. When a major emergency hits the state, he helps coordinate the health and medical response. Winter Storm Fern stuck with him because it showed how quickly life can come apart.

Emergency planning isn't only roads, shelters, and weather alerts. It's also about daily life: medicine, transportation, communication, batteries, caregivers, equipment, and the people you trust.

Sydney Clark builds her work around that. She is the Maternal and Child Health Emergency Preparedness and Response Coordinator at the Department of Health. She previously served as its disability and preparedness specialist. She is blind, and she brings both professional knowledge and lived experience to the job. Her goal is to make sure people with access or functional needs are part of emergency planning. That includes getting ready, responding, recovering, and reducing risk before the next emergency.

That means more than writing the right words in a plan. It means "making sure that we're actually talking to the people that we're trying to serve," Sydney says, "getting input on making sure that our [work] is actually reflective of their needs."

Tennessee has to plan for a lot: tornadoes, floods, winter storms, earthquakes. Sometimes the disaster is one nobody expected. Few people thought a hurricane could reach Northeast Tennessee, until Hurricane Helene did.

"Anything could happen here," Sydney says. "Emergency plans are only as good as they can be until you have to use them."
A real emergency will never follow the plan exactly. Plans have to keep changing because each emergency teaches us something new.

Every emergency starts local

Paul Petersen sums up how disaster response begins in three words: "Every emergency is local."

The first people to help are usually the ones already nearby. They may be neighbors, family members, local responders, churches, schools, community groups. They know the roads and the shelters. They may even know which homes lose power first and which neighbors need extra support.

That's why most of the time, Paul says, responses start with people "serving locally, that live in those same communities." They know "how to best treat and take care of the populations at hand."

When an emergency outgrows local help, it can move up to the region, the state, and sometimes the federal government. Paul says Tennessee is more collaborative than many states. "Tennessee leans forward a lot at the state level to help support counties in a response," he says.

During a disaster, Paul may work from the State Emergency Operations Center. This center is run by the Tennessee Emergency Management Agency, or TEMA.

He describes the room as a place where many kinds of help come together. "I may have the Red Cross on one elbow," he says. "I may have the National Guard or law enforcement at the other."

After Helene hit Northeast Tennessee, the state pulled teams from other regions to support local staff. "It's our job to kind of braid all that stuff together when we have an emergency," he says.

That takes planning. It also takes relationships, and those have to be built before the emergency, not during it.

Have a plan, and a backup plan

Paul's preparation advice for people with disabilities, and for anyone who supports someone with a disability, is simple. Know how things work. Know who to call. Make a plan before something goes wrong.

Two parts matter most to him.

• The first is a communication plan. That means knowing who you can reach in an emergency, especially if there's a medical need, and keeping an up-to-date list of important contacts. That includes medical providers, your county emergency management agency if you have one, and your local 911 system, especially if your home depends on devices like oxygen. The plan should include both family and emergency contacts. It should also include backups. One phone number isn't enough.
• The second part is a basic family kit, with enough medicine, food, and water to last several days. Keep it in one place so you can grab it quickly.

Sydney Clark knows this can feel like a lot. "Preparing for an emergency or disaster is really hard, really stressful anyways," she says. "But then when there are these extra considerations that people have to think …about… whether that be durable medical equipment that they have to think about, batteries, chargers, sensory items, whatever that may be… that can be really overwhelming."

She says part of the problem is emotional. Preparing for an emergency means thinking about something scary before it happens.

"If you're needing this stuff, that means something bad has happened," she says. "It's a scary thing to think about."

Still, she says, the answer is not to avoid planning. "Yes, it might be something that is scary to think about, but it's better to have it than to not have it."

Robert Goff, director of emergency preparedness for the department's Southeast Region, gives similar advice. He says the biggest mistake is "not planning ahead, or even worse, assuming help will come immediately after an emergency."

His rule: "Each household should plan for being self-sufficient for 72 hours."

A kit should be personal. Food, flashlights, batteries, and a battery-powered weather radio help almost everyone, but the rest depends on the household. For one person it's "a few extra days of medication." For another, "a foldable cane in case they have to evacuate and something happens to the cane they normally use," Robert says. For someone else, "a low-tech communication board that can be used with emergency responders or at a shelter if their tablet isn't functioning properly."

Plan around needs, not labels

Planning gets stuck when people focus only on labels or diagnoses.

Paul Petersen prefers the access-and-functional-needs approach because it starts with a better question: what does this person need to be safe, informed, healthy, and as independent as possible?

It's "less labeling folks," he says, and more about real support. "Let's talk about what the actual need is that they have. People can focus on the action they can take rather than being mixed up with what words they use."

Sydney explains access and functional needs in a simple way. They are "resources people need to be able to access to function."

Anyone can have one, even briefly. "If you wear glasses and you leave to go to the grocery, but you forgot your glasses and you can't read the stuff in the store anymore... you have an access and functional need," she says.

She says thinking this way can help people who have not spent much time around disability understand that access is not a side issue.

"This could be me. This could be me at any point in time."

To make the idea useful for local responders, Sydney's team relies on a tool called CMIST, which sorts needs into five groups:

• Communication
• Maintaining health
• Independence
• Safety and security
• Transportation

Sydney describes these as "buckets" that help responders think about support without making the person's diagnosis the whole story.

"We don't have to say, 'Oh, that person's Deaf,'" she says. "We can say, 'Oh, this person needs some sort of communication accommodation.'"

She says that keeps the focus on support and keeps planners from trying to list every possible diagnosis. Disability runs along spectrums, and planning by diagnosis pulls people "into the weeds."

Plans have to be tested

Writing inclusive plans isn't enough. "It's really good to put stuff on paper and a plan," Paul says, "but until you really test it and know how it's going to work, you need that insight." He pushes teams to include people with access and functional needs in trainings and exercises, so they can find what works before the next emergency.

Sydney agrees, and warns about what happens when they're left out until disaster strikes. If a community has to evacuate to a shelter, responders may scramble to support people they "probably in a lot of cases didn't think about beforehand," adding unknowns at the worst possible moment.

Tennessee has started building disability related guidance into its plans, which then guide regional and local partners. Sydney won't oversell it. "I don't think by putting it in a plan that that is anywhere near enough," she says. "But we are working [on it]."

Fight Flu TN, now in its eighth year, is one way to test those plans. Once a year, the state opens a free flu shot clinic in every county for a single day. It exercises preparedness plans, while giving communities a direct benefit: free flu vaccines. Local teams pick an at-risk or first responder group and show how they improved access for that group.

This is part of what Paul calls a "continuous quality improvement cycle."

That kind of work isn't dramatic. Most of it happens on quiet days. But those are the days the strongest plans get made.

"Don't plan about us without us"

"Nothing about us without us" is a familiar saying in the disability community: people with disabilities should help make the decisions that shape their lives. Paul says it a little differently: "Don't plan about us without us."

That idea runs through Tennessee's access and functional needs work. Planning works better when people with disabilities are part of it from the beginning.

Teams led by people like Robert Goff, Sydney Clark, and Jennifer Johnson with the Tennessee Department of Health have written tips for first responders, led trainings, and joined advisory groups, including one that works with TEMA during calm "blue sky days," long before disaster hits. Paul calls it "forward-leaning, proactive work with the disability community." Robert calls it a "whole community approach."

Bringing those voices in early, Robert says, "helps planners understand unique considerations that should be incorporated into emergency planning, response, and recovery." It also lets disabled people know "that those resources will be available when they're needed."

The payoff isn't only better plans. "Relationships have developed that have been useful in daily tasks and projects," Robert says.

At the Department of Health, Sydney helps run the FANS work group (Functional and Access Needs Support). She calls it "a small group made up of subject matter experts or people with lived experience."

Many members live with the needs they advise on. Sydney is blind. Chris Davis, of the Partnership for Families, Children and Adults in Chattanooga, is Deaf. Edward Mitchell, Executive Director of the Tennessee Independent Living Council, uses a wheelchair.

The group comes in early, not at the end. "We want to make sure that we are including them from the very beginning," Sydney says.

One current project focuses on accessible communication, which Sydney says is impossible to do alone. "We can't really talk about that without including the people that need accessible communication."

She describes the relationships as "multi-directional" and "mutually beneficial for everyone to participate, because we're all there for each other."

Lived experience matters to Sydney, but she's careful with it. One person can't stand in for everyone. "Sometimes, you have to take yourself out of it," she says. "It's not necessarily about you. I might have some challenge, but that does not translate to everyone."

The biggest change she's seen is awareness, paired with the will to act on it. "The want is there," she says.

She frames it as a choice. "You weren't thinking about this before because you didn't know. And now you are aware. So, what are you going to do about it?"

Comfort with discomfort

Sydney watches how disability gets talked about in planning. She's seen it flattened into a story about helplessness, and she rejects that. She wants people to ask, listen, and plan with disabled people instead of guessing.

Many professionals misunderstand what different disabilities require, she says, and some are afraid to ask. "People don't want to offend other people or people don't want to ask questions that they might think [are] inappropriate," she says. "But sometimes that's just what you have to do." To her, asking is a form of care: "It shows that we care, and that we really are trying to get the most accurate information to be as helpful as possible."

She has co-led a talk with Robert Goff about exactly this discomfort, called "Let's Make It Awkward."

The awkwardness doesn't vanish overnight. "When you're not aware of it or it's something you've never encountered before, yeah, that's going to be uncomfortable," she says. "It's never going to get better if you avoid it."

The danger isn't discomfort. It's when discomfort hardens into assumptions. She gives an example of a shelter worker who takes one ASL class and assumes they know what a Deaf person needs. "You just assumed what that person needed without actually communicating with them in a way that is most effective for them."

The goal isn't to expect less of disabled people. It's to stop believing there's only one right way to do something. "In a lot of cases, maybe I can't do something in the way that you would do it," Sydney says, "but that doesn't mean I can't do it."

The one thing readers can do

Paul Petersen wouldn't fix any of this with a registry, a master list of people with disabilities. He understands the appeal, but worries a list is "about as updated as when [you added] the last person you put on there. Everything else is out of date." People move. Needs change. Phone numbers change.

The systems to help, he says, already exist. The problem is that "there's so many steps in that process that people can get lost in that navigation." Help isn't missing. It's hard to find when it counts.

So his ask is small and concrete: show up and be heard. Every county has a community health council, and there are local emergency planning committees where real decisions get made. Too often, no one at the table lives with the needs being discussed, and systems end up serving "whoever is yelling the loudest." That isn't the same as serving everyone fairly.

"Bringing that disability or functional need to the table so others can understand better, I think would strengthen a lot of the work that we do," Paul says. The state's job, as he sees it, is "to be able to magnify that voice."

A good plan doesn't start with pity, panic, or a list of labels. It starts with a conversation. What does this person need? What works for them? What would help them stay safe, communicate, move, make choices, and get through the emergency with as much control as possible?

The people most affected by a plan should help shape it. That's what makes it stronger.

Nothing about us without us.