A Girl Floating Down the Road on a Door: Our country’s urgent need for inclusive search and rescue training
It all started with my nightmares.
I am a firefighter and have the honor of serving on a New York State Urban Search and Rescue (US&R) Task Force. Our team is made up of eleven first responders and we deploy to regions when catastrophic natural disasters strike. In the last year we have deployed seven times: three wildfires (one of which was the prolonged Los Angeles Fires), two hurricanes, and two floods throughout the Northeast and Southern parts of The United States.
On September 27, 2024 our team deployed to Northern Florida to support coordination of rescue operations during and after Hurricane Helene made landfall.
Like all first responders, I have encountered victims and situations that stick with me; faces and names I can’t easily forget, calls that linger in my mind and hurt my heart. But I’m different. When I get home all of that goes away.
Our job is to get home safely at the end of shift and make sure every team member does the same. For some, those tough shifts, those names and faces are forever etched into their heads and hearts. Not for me. It all goes away the second I get home.
Some are harder than others to shake off — especially when victims are children, or when what begins as a search and rescue evolves rapidly into a search and recovery with an outcome beyond our control. Those thoughts disappear when I open the door to our apartment and see the emergency of our home. For families like ours every day is an emergency.
Images of rolling fires, families sitting next to eachother like mannequins slumped over with carbon monoxide poisoning, and motor vehicle accidents on the West Side Highway — each fly out of my head as soon as I open the door and see my family: my strong wife, our teenage son, and our forever stunning daughter. Our beautiful emergency.
When I open the door, our daughter is the emergency. Our sweet little girl with severe special needs and myriad medical complexities relies on her mom, dad, and brother for everything. Susannah constantly needs a rescue; a rescue from injuries caused by her cruel movement disorder, terrifying epilepsy, or because she’s losing vision and our whole family knows it. She is our beautiful daughter with a stunning smile — an incredible kid who needs twenty-four-hour care and often life-saving response. Her big brown eyes fill every room with love, and for one fleeting moment I forget about her disease — until the next emergency.
It’s not fair to give a child the ability to walk, run, play ball, see sunsets… only for those carefree, sacred joys of life to be ripped away by a rare neurological disease. The degenerative nature of Susannah’s disease is cause for her to (almost completely) rely on a power wheelchair. She loves that chair. It’s part of her; an extension of her body. It empowers independence. With Suzy’s battery-powered chair came the first time somebody wasn’t carrying her into a room or pushing her in an adaptive stroller. With her new wheels Susannah zooms off (crashing into furniture along the way) and yells “byeeeee.” That chair is magic, and without it her life would be dangerous and more painful. Many members of our special needs community rely on power chairs. People we love count on functioning ventilators, electric feeding pumps, battery-powered communication devices. All vital innovations for a thriving, happy life. Without these assistive devices many individuals are unable to move, eat, communicate or breathe. First responders, in general, don’t know that.
Medication. The number of pills Susannah takes in the morning, afternoon, and night is overwhelming. We often find ourselves guilt-ridden and panicked, calling her doctor on the weekend because I forgot to pickup a refill. A refill of medication that if she misses even one dose, a life-threatening seizure could strike.
Like others in our community, Susannah can’t live without taking medication at specific times during the day. We carry “rescue meds” with us at all times — medication to administer during a prolonged seizure. A mountain of medication essential to the lives of people affected by diseases like hers. That’s one out of every ten people. Over thirty-million people living with a rare disease which requires specialized care — and specialized emergency response.
Back to my nightmares.
Last September our team was in Florida for the aftermath of Hurricane Helene. Streets were flooded, dangerous debris from wrecked homes floated through crowds of freezing people, and hazardous material soaked into skin of the thousands without a home.
We were prepared, like always. We train often and have excellent instructors. Every certificate earned at the academy and years of advanced training prove that rescue teams are prepared. We are a confident team capable of performing epic rescues; however, I now realize that we lack a critical skillset. Despite excellent chiefs and teachers, despite rehearsing every possible rescue scenario, months in the academy — a vital training never made it into our rescue arsenal. A critical skillset was never part of our training and isn’t baked into fire or police academies.
Without this special training, first responders are sent off to help people in catastrophic situations unprepared to rescue one in every ten victims.
Florida. Wearing my protective gear, I was waist-deep in polluted water removing a fallen power line when I noticed a young girl sitting on a red door moving with the current past me. I yelled to her “Are you okay? Do you know where you’re going? Need help?” She shouted back to me with confidence “I’m okay! My father is behind me, I don’t need help!” I saw a man (a few years younger than me) sloshing through the water twenty yards behind the girl. I smiled. I was relieved. She articulated clearly that she was not injured, she was safe and supervised. I gave her a thumbs up and made sure the man was indeed her father.
When I shifted focus back to the downed power line, it hit me hard. I was paralyzed with fear. I suddenly realized something I should have unearthed years ago: what if that girl moving with the current of this hurricane-ravished, flooded street atop an old door was my sweet, unassuming, quiet daughter? What if that girl was Susannah?
If somebody yelled to my daughter from a distance “Are you okay? Are you safe? Do you need help?” Susannah would smile and wave. Maybe even muster enough energy to yell “Hiiiiii.” Nobody would rescue her because Susannah waved and appeared to be safe — not in immediate danger. In reality, she would float with no direction in a scary environment without a caregiver by her side. Factors that compound fragile emotional and physical disabilities in an emergency situation.
That wave and smile is, for Susannah, a cry for help; her only mechanism of communication with people she doesn’t know. There is no way a first responder would perform a water rescue and bring her to safety. She waved. She smiled. She’s safe, right? No. She’s scared and can’t move. She’s without her power chair. She trusts the poison, wicked water. With compromised balance and ataxia, she will surely fall off the door and drown.
I couldn’t shake it. What if it was Susannah floating to danger? What if it was a member of our special needs community who is nonverbal but always smiles and waves their hands? Who would know? Who would identify and rescue vulnerable people like Susannah? Where’s their caregiver? Where’s their power chair? Rescue meds? Not even the most skilled first responder was trained to rescue a person with severe special needs. There was no education at the academy teaching us how to identify a nonverbal child who communicates with an assistive device — a device which is broken and missing in most rescue situations. None of us have a certificate on the wall to prove we logged hours training to make sure a kid with epilepsy gets their medication on time. Medication that probably floated away and dissolved minutes after that hurricane made landfall and destroyed every structure in sight.
Nobody would save my daughter. Training does not exist to prepare first responders to help the thirty-million people living with a rare disease; a disease like the one our family deals with every single day.
People with autism, cognition challenges, invisible disabilities, spasticity… our community. The special needs population would become a search and recovery operation, not a search and rescue.
I was frozen. I threw up in the already filthy water on a destroyed, flooded street in Florida with a dead power line in my hand.
Two days later I opened the door to our New York apartment. I was home. My son was doing homework, Susannah was staring off blankly sitting in her power chair, and my wife was performing the specialized maneuver of changing Susannah while seated. Susannah’s pills were on the floor because she threw them… all a predictable piece of our normal puzzle. That’s the routine which immediately allows me to forget a tough shift and leave my day in the elevator. The beautiful chaos of our life forces us to focus on the routine emergency in our home.
Only something was different that night. I was still haunted by her — the girl on a red door floating down the street in Florida, and the reality that if it was Susannah instead of that girl my daughter might be dead.
I felt sick as I fell asleep alone in the guest room (one of us always has to sleep next to Susannah in case she has a seizure during the night and needs to be resuscitated). Alone in bed I knew I was going to have a nightmare about our work in Florida — a nightmare that I usually don’t have because hey, I shake it off after shift and don’t think about the ugly stuff. Not anymore. For weeks I had the same nightmare: Susannah was floating down a flooded street alone, and while I didn’t see it happen in my dream, I knew she died because nobody was there to rescue her. Every single night. So I stopped sleeping.
I imagined different scenarios. Maybe that would help me sleep. Instead it made things worse. Faces of other kids from our community — dear friends in the same situation crept into my nightmare. I thought about people living with different and more common diseases. Alzheimers. Huntington’s. MS. Spastic paraplegia. Parkinson’s. Autism. So many more.
Firefighters aren’t trained to identify why somebody is walking alone, away from a group of people during the disorientation and dense smoke of a wildfire. Maybe the victim has dementia and is sun-downing. Maybe they have cognition problems and are anxiously looking for their caregiver. Maybe they have epilepsy and are in a post-seizure state of confusion. Unless a victim hits their head and sustains a concussion, we wouldn’t search for alternate symptoms — and it’s very difficult to identify the why's during an emergency situation. We would miss something life-threatening because first responders in The United States aren’t trained to look for rare medical complexities — for zebras.
Our country’s first responders are up for the challenge. Fire Departments in LA want this expertise — we all want specialized tools in our life-saving toolbox. First responders live to help the vulnerable, and (as a friend recently said) resilient responders make resilient communities. Nobody trains as hard as first responders. We’re gritty. Every element of expert life-saving comes from intense training; training we need, and training we want.
Meds. Do other first responders know that sodium channel blockers could kill a person with a certain rare epilepsy? Are we trained to recognize how important it is for that victim not to accidentally take somebody else’s medication in the chaos of displaced people searching for meds in a makeshift shelter?
No, it’s not safe to miss even one dose. Part of search and rescue protocols should include driving an emergency vehicle through dangerous terrain in a wildfire to reach a pharmacy and pick up medication. Seizure and anxiety medication carry the same (potentially fatal) urgency as extracting a passenger in a motor vehicle accident. We were trained for the MVA, not the pharmacy run to help a victim with epilepsy.
Autism. A large contingency of our special needs community lives with various severity of autism spectrum disorder. During the LA fires, when evacuation orders were put in place, we evacuated a mother and her autistic son. We brought them to a shelter. A few hours later I returned to check on them. The shelter director said “Oh that family. The boy was too violent and we can’t house a dangerous individual, so we turned them away.” Turned them away. Sent them back to their car with one option: drive home into the dangerous evacuation zone. Why? Because people living with autism need calm environments with sensory support. Flashing lights and sirens can be traumatic for a person living with autism. The boy was not violent, he needed to interact with a first responder who was trained to engage somebody with autism during a highly stressful emergency situation. We need to prepare shelters with staff trained in autism response and care.
Power. What about people who rely on ventilators to breathe? Are first responders trained to remove mucus and prevent a life-threatening blockage of oxygen? Not in my academy class. Electric feeding pumps? Communication devices? Nope. Are we equipped with the knowledge that a pediatric power chair weighs 400 lbs, takes two people to lift, and angles of most chairs require specialized transport to stay above water level? No. We see lithium-ion batteries as a hazmat threat. We clear the battery, destroy the chair and throw the victim over our shoulder — a victim who might have spasticity and is experiencing unbearable pain — all because this improvisation of a rescue is not in any training protocol. We just destroyed a power chair (which cost thousands of dollars and months for a patient to receive). The most elite Search and Rescue team just destroyed a person’s freedom. We were taught how to safely remove lithium-ion batteries and evacuate able-bodied victims. We were not trained to evacuate a person with the painful, severe tremors of Huntington’s Disease.
We learn how critical communication is during rescue operations, but what if a person only communicates using an iPad or battery powered talking device?
Battery Life: Susannah’s Power Chair.
First responders are trained to make sure o2 tanks operate properly. We are not trained to operate a vent which people in our community rely on for every breath. We need to make sure every rescue vehicle and every shelter is equipped with generators — not just to keep the lights on, but to keep people who depend on power-operated medical equipment alive.
All this from my nightmare. A systemic problem in emergency response training is now a responsibility we can’t ignore. All this on the shoulders of patients, caregivers, and the healthcare community. All this because I saw a girl floating safely down the road on a red door.
A week later Rescue 7 Firefighters for Patients was born. We rapidly developed a program which will be integrated into public and private first responder training. Inclusive training that leaves no patient behind. Training to educate community leaders about the unique needs people with complex medical conditions live with every single day and how to support us during an emergency.
It’s time not to just train until we get it right, but to train until we can’t get it wrong. That means inclusive first responder training for the special needs community. We don’t leave anybody behind.
