Nick Dupree says he'll never be able to thank everyone enough for the community effort that got him through five days without power.

Nick Dupree says he’ll never be able to thank everyone enough for the community effort that got him through five days without power.

Manhattan resident and vent user Nick Dupree and his partner Alejandra Ospina, who also uses a wheelchair, were trapped on the 12th floor of their apartment building when the storm knocked out power. Lacking life-sustaining electricity, they posted a plea for help on Facebook. A small army of friends and strangers across the country quickly pulled together to lend advice, money and support.

Dupree and Ospina survived Hurricane Irene last year without damage or loss of power, but they stocked up on water and basic necessities for Sandy. They also knew the firehouse across the street had a generator if backup power was needed.

The day before the storm hit, city officials shut down all public transportation, cutting off the island, with no way for caregivers to get to Dupree. Ospina reached out to friend Akemi Nishida, who lives in Brooklyn, to see if she could spend a few days with them. Nishida did not hesitate. “I did it because they are my friends and I knew they would need some help,” Nishida says. Ospina didn’t realize it then, but it turned out to be a very important decision.

The storm blasted into Manhattan on Monday night, Oct. 29, and the situation quickly turned critical when the Con Edison Manhattan power station exploded in a large fireball. Much of lower Manhattan would be without power for the next five days.

The trio hoped for a brief outage, but they knew Dupree’s two portable vent batteries wouldn’t last long. Since they were stuck on the 12th floor, Nishida would now be a vital asset. “I was the main person who was running up and down stairs to recharge batteries every couple hours,” Nishida says.

Ospina managed to get an update posted to Facebook via her cellphone early Tuesday morning. She asked for volunteers to help haul batteries to the firehouse for charging and for alternative methods to power Dupree’s vent.  Things grew ominous as the day progressed. “We no longer had electricity or running water, and we had also lost Internet and cell phone access,” Ospina says. “Even our land line, which we thought would be a failsafe, didn’t work.”

Ospina and Nishida would get sporadic text messages, but they didn’t know if their outgoing texts and Facebook messages were being received. Little did they know, but a tremendous outpouring of help would be headed their way. Tuesday evening a Google document began circulating on Facebook and Twitter listing needed supplies and slots for people to do battery runs and shuttle caregivers to Dupree.

While requests for help were circulated, Nishida provided valuable assistance to Ospina, who has cerebral palsy. She helped turn Dupree, prepare his tube feedings and medications along with helping to attend to his respiratory needs. Nishida carried on with her nighttime battery runs, and a neighbor began assisting during the day.

Need for Community Resources
While Dupree, his partner and friend battled to survive Sandy, others with disabilities dealt with their own difficult circumstances. Jessica Moye, 28, also has CP and lives in Rockaway, Queens. Moye hoped to ride Sandy out in her apartment, but after losing power and heat, her extremities went numb. The paramedics rushed her to the hospital with symptoms of hypothermia. Moye was examined and wrapped in warm blankets. Fortunately, her symptoms soon eased. “It wasn’t hypothermia … it was just my body’s natural reaction to being cold,” Moye says.

Jessica Moye: "It hurt my heart. I just felt like we were forgotten."

Jessica Moye: “It hurt my heart. I just felt like we were forgotten.”

Moye was to be discharged the next day but had no place to stay. Family members searched for temporary housing to no avail, and the hospital social worker wasn’t helpful. “The only thing she suggested was three shelters at local high schools and colleges,” says Moye, who didn’t know if they were accessible, so she went to stay at her brother’s cramped studio apartment.

Moye is troubled by the city’s lack of disaster response for people with disabilities. “It hurt my heart,” she says. “I just felt like we were forgotten and sort of thrown to the side.” The city advised people to check on the elderly and disabled, but Moye wonders about those who are alone. “If we don’t have the family and we don’t have the friends, who do we have?” Moye asked. “Are we literally just left to die in situations like this?”

Moye’s experience taught her to be thankful for friends. She says people with disabilities need to lobby for better disaster response, but in the meantime the community must create its own resources.

Social Media Brings Help From Strangers
Maplewood, N.J., lawyer Daniel Florio uses a vent to breathe. His generator went dangerously low during the aftermath of Sandy. Thanks to the kindness of strangers, he was able to ride out this historic storm and avoided an emergency evacuation to the hospital.

Florio, 43, lives with his parents. After Hurricane Irene, they bought a generator.   Before Sandy, Florio bought 20 gallons of gas for the generator and his uncle called police to let them know about his situation. When the power went out, the generator kicked into action, using 10 gallons daily to run Florio’s vent. By Wednesday supplies started getting low. Florio’s parents drove to the police department to get more gas, but they couldn’t spare a drop.

Daniel Floro used Facebook to find gas for the generator powering his vent.

Daniel Floro used Facebook to find gas for the generator powering his vent.

Florio decided to post a Facebook message to ask for help, but his mother had to drive a mile to find cell reception. He had people contact his nearby aunt who had power, and she in turn would message him back with the nearest offers, mostly from strangers. “One of them was a member of my mom’s synagogue and the other was a (local) friend of a friend of mine in California,“ Florio says.

Florio was able to stay home and avoid a dicey trip to a likely overcrowded hospital. The response to his needs surprised Florio, and he’s grateful for the assistance and the effectiveness of social media.

Coordinating Help From Out-of-State
Meanwhile, Nick Dupree’s lack of power was becoming critical. But unknown to him, help was coming — from far away. Crystal Evans-Pradhan, 31, of Braintree, Mass., spent Monday evening glued to CNN as Sandy made landfall — she had family in the New York City area. Feeling helpless about the situation, she remembered her online friend Nick Dupree in Manhattan. Evans-Pradhan, who has mitochondrial myopathy, had met Dupree through a mitochondrial disease support group.

She went to Dupree’s Facebook page, saw he didn’t have power and immediately contacted the Red Cross and FEMA for help. She told the Red Cross about Dupree’s situation, but their only advice was to get him to a shelter. She knew this wasn’t possible and moved on. She e-mailed FEMA about Dupree being vent-dependent and stuck in Manhattan without power. Marcie Roth, FEMA Office of Disability Integration and Coordination, e-mailed back with what sounded like good news. Roth had known Dupree for years and told Evans-Pradhan that she’d share the request with emergency personnel in New York. It seemed the situation would soon be remedied and Dupree would get help.

Crystal Evans-Pradhan used social media to fund a PayPal account. Then she and a friend bought marine batteries and other equipment to keep Nick Dupree's venitlator running.

Crystal Evans-Pradhan used social media to fund a PayPal account. Then she and a friend bought marine batteries and other equipment to keep Nick Dupree’s venitlator running.

It soon became evident that help, if it came, would be slow, so Evans-Pradhan took action herself. She went to Home Depot and researched generators but realized something gas-powered wouldn’t work in an apartment. Then she remembered that a car battery could be a solution, so she posted a message to Facebook asking if this would work.

At an Autozone an employee of a local DME overheard her quandary, suggested an inverter and battery, but said she’d have to know the type of vent and its power requirements. Evans-Pradhan called friend Sandy Yu to see if she could accompany her on an impromptu rescue mission. Yu agreed to drive. Their plan was to pick up supplies along the way while they figured out Dupree’s vent setup.

It would be an expensive proposition. Evans-Pradhan had a PayPal account and posted a plea for assistance on Facebook. It was a long shot but their only option. They hoped to raise $300 but were in for a surprise. As they headed south, complete strangers interceded. “We kept driving and we got a $10 donation and a $15 donation and a little bit later we got a $50 donation,“ Evans-Pradhan says.

Carrie Lucas, a vent user from Windsor, Colo., knew which vent Dupree used. She and Evans-Pradhan communicated back and forth and figured out Dupree needed an inverter to run his vent by a marine style battery.

Another online helper made a generous $300 donation. They now had plenty of money to start purchasing supplies. Around midnight the pair stopped at a Wal-mart, where they bought two marine batteries and all the water they could carry. They looked for an inverter but none were in stock. Soon they learned somebody had dropped one off with Dupree after a request was put up on the Hopemob website. “That was a big relief,” Evans-Pradhan says.

The duo found Manhattan in complete darkness. “All of the cellphone towers were down and we were using cellphone GPS,” Evans-Pradhan says. Fortunately she was somewhat familiar with the surroundings. They finally reached Dupree’s building at 2:30 a.m. Yu went over to the firehouse to get help transporting supplies. The firefighters said they weren’t going to help haul anything upstairs. Shocked, Yu had a few choice words for the firefighters.

Yu began carrying supplies up to Dupree, and soon it was time to connect Dupree to his new battery-powered lifeline, but Yu was nervous about shorting out his vent. To her relief the system worked perfectly. It was time to head back home because Yu had to work. After a long night, they arrived back in Boston at about 10 a.m.

Getting Through the Longest Week
Dupree badly needed power for his other respiratory equipment. A friend from Queens biked in another power inverter Thursday morning. Getting batteries into Manhattan became difficult because of the gas shortage, and Evans-Pradhan knew a return trip was needed. Fortunately they had donation money left. Portlight Strategies, a nonprofit providing disaster relief for people with disabilities, stepped in to help.

Paul Timmons, Portlight CEO, says they helped Dupree with transportation costs for supplies and caregivers. Portlight also helped publicize Dupree’s plight.  Timmons was amazed at the outpouring of support. “The disability community really came out of the woodwork to help,” Timmons said.

Timmons says inaccessible shelters remain a huge problem, which he blames on well-intentioned shelter operators being intimidated by accessibility requirements. “People’s eyes glaze over and roll up in their heads and they just say we can’t do all of this, so we’re not going to do any of it,” he says. “I think we’ve got to help show them a way to do it right that’s workable for them.”

Evans-Prahan recruited friend and Etsy client Gisela Voss to drive down to Manhattan for a final trip. Unfortunately, they needed a third rider to be allowed into Manhattan because of temporary occupancy restrictions. Voss was able to get her sister Karin to fulfill this role. They made the journey down to the city with three more marine batteries, which helped Dupree make it through one of the longest weeks of his life.

Lack of Planning, Lack of Response
Power finally came back on at 4:30 a.m. Saturday, Nov. 3. The five-day Sandy saga was finally over for Dupree, and life could slowly start returning to normal because so many people came together for him. Friends and strangers cannibalized abandoned cars for batteries and biked across the Brooklyn Bridge with their heavy load. They even pitched in with Dupree’s care. Ospina says the tremendous response from people with and without disabilities blew them away, and still does. Dupree says he’ll never be able to thank everyone enough for their support. He hopes his story will encourage people to act similarly towards others in future disasters.

Superstorm Sandy not only showed the kindness of humanity, but it also demonstrated the transforming power of social media. Akemi Nishida says the beauty of Dupree’s situation is that so many people stepped in even though they didn’t necessarily know him and they were not a part of the disability community. “I think that was amazing … I think that was great.”

Dupree’s situation ended well, but it pointed out the ineptness of disaster response when it comes to people with disabilities. Evans-Pradhan was horrified at the FEMA response. She composed a blog post about helping Dupree and sent it to FEMA. The only reply from FEMA she got is what a good friend she is. This offended Evans-Pradhan. “I mean I’m not complaining that I had to do the job, but at the same point those are the agencies that should be there to help people like us,” Evans-Pradhan says.

Paul Timmons: "I think we've got to help show [shelter operators] a way to do it right that's workable for them."

Paul Timmons: “I think we’ve got to help show [shelter operators] a way to do it right that’s workable for them.”

Nishida heard countless stories of what happened to people with disabilities during Sandy. “I was really frustrated how there is no plan …
[by the government],” Nishida says. She just wishes the resources that went to Dupree could have been distributed to others with disabilities as well.

Dupree says common sense is needed when dealing with people with disabilities during disasters. Hospitals can be dangerous places for people with chronic conditions. People with needs like his are often abandoned when short-staffed hospitals must deal with other storm victims. Dupree contends evacuation should be a last resort. “There should be federal and state assistance for sheltering in place, so fewer people end up tragic footnotes in a hospital horror story,” he says.

In the aftermath of last year’s Hurricane Irene as well as this year’s Sandy, a legal battle over New York City’s disaster response to people with disabilities has begun. On Nov. 6, United States District Judge Jesse Furman granted class action status to a lawsuit claiming New York City failed to adequately account for its 900,000 citizens with disabilities during disasters like Hurricane Sandy.

The suit makes three major allegations: New York City failed to have a clear evacuation plan for people with disabilities and adequate available transportation; the city failed to ensure shelter accessibility and the ability for New Yorkers to get needed critical disability-related supplies; the city failed to plan for people who need power to survive, especially when a power outage is likely. The plaintiffs in the case are the Brooklyn Center for Independence of the Disabled; the Center for Independence of the Disabled, New York; Gregory D. Bell; and Tania Morales.

Susan Dooha, executive director of the Center for Independence of the Disabled, says the case is long overdue. “We’ve been warning the city for years that it is woefully unprepared for the needs of people with disabilities during an emergency. We can’t wait for people with disabilities to get hurt or die to see change. We need change now.”

What Can We Expect from FEMA?

This interview with Marcie Roth, director of FEMA’s disability integration and coordination office, took place, ironically, about a month before Hurricane Sandy. We requested the interview in response to the numbers of New Yorkers who couldn’t access shelters during last year’s Hurricane Irene due to reasons such as keys to the only accessible entrance being misplaced. We wanted to know what people with disabilities can expect from the federal agency when their region is faced with a major emergency.

NM: Specifically, what is FEMA doing to address such widespread problems as inaccessible shelters and lack of access to necessary equipment or services during an emergency?

MR: Over the past three years FEMA has been working very hard with our federal, state and local partners. We have a memorandum of agreement with the National Council on Independent Living assistive tech state programs and are really trying to bring folks together. We have a disability integration specialist in all 10 regions to work with states and disability community leaders long before a disaster to see what the needs in those communities are.

In addition, should a state ask for assistance, we have contracts in place for an indefinite quantity of  DME and consumable medical supplies. So if a state in a catastrophic event needs 10,000 wheelchairs, we have the ability to provide those. Also recently we’ve entered into contracts to help provide personal assistance services in shelters or other congregate settings, like a gym in a high school. If a state requests, we have contracts to put services on the ground within 24 hours.

We’ve been doing lots of training about access, physical and communication, so general population shelters can meet the needs of disaster survivors.

NM: Back when 9/11 happened, New Mobility ran a story about two wheelchair users’ experience in the World Trade Center. One man lived, since he had access to emergency equipment and coworkers who assisted him. One man died, since he couldn’t easily evacuate due to his size. What should people think about in office environments, so they have a better chance of surviving?

MR: Equipment and planning … one without the other will do you no good. Right now the Rehabilitation Engineering and Assistive Technology Society of North America is working on standards for evacuation chairs. If I work in a high-rise building and we either don’t have equipment or my weight exceeds the capacity of it, then I need another plan. Gen. Eisenhower once said, “plans are useless, planning is priceless.” If your plan is flawed from the start because you weigh 300 pounds and the chair only accommodates 200 pounds, you can wait for others to figure out there’s a problem, or you can work with others toward a solution.

NM: So how can people with disabilities assure they’ll be able to survive an emergency situation?

MR: It’s everybody’s responsibility to take an active role in emergency preparedness and work with their local community. For example, I would say to someone who uses a vent that you need to work with the folks in your local community to figure out where a person who uses a vent can evacuate to so you don’t have to go to the hospital, and if you’re going to shelter in place, you may be a resource to other people.

Find out who’s got what, and sometimes the person who uses a vent and who was able to figure out how to have a generator might be a good resource to people in the neighborhood who want to charge their cell phone. It’s not just what we need, but what we can bring to the table, like problem-solving. People with disabilities are really good at problem solving, since we’re dealing with emergencies all the time.

I’m talking about shifting the paradigm, not thinking of the government as the solution, but thinking of everybody as partners.