Eye of the Storm

By | 2017-01-13T20:43:54+00:00 December 1st, 2005|
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The lucky ones got out alive. Whether they executed personal evacuation plans with friends or family or relied on public transportation and shelters, most wheelchair users living in the path of Hurricane Katrina survived. But what happened next made them feel anything but lucky.

A huge number of people were evacuated without their wheelchairs, stashed on bridges or underpasses for up to 12 hours without so much as a cushion to prevent skin breakdown. Some power chair users were able to take manual chairs, only to be parked somewhere for half a day. Para Dwayne Russ reports that he was evacuated with the last 40 people out of Charity Hospital–they were crammed into a sweltering 18-wheeler for a miserable ride to the airport, where the nurses promptly abandoned them. They spent three days on cots in the airport before being stacked five-high on a military plane, flown to parts unknown and deposited in a nursing home. Ironically, says Russ, his nursing home was the best of it–orderly, clean, private, accessible, with wheelchairs aplenty.

Those who were able to evacuate with their chairs found that most shelters could not, or would not, accommodate them. And yet the staff offered no alternatives in many cases–a fact that infuriates Sylvia Manning. She contacted the Red Cross and other organizations working in San Antonio to provide a free accessible apartment, but didn’t get one reply. “The bureaucracies took over and real offers from real people were not part of their paradigm,” she says. “Anyone with a disability who made it out of New Orleans is probably in a nursing home or some sort of institution, and they may be there for a long time.”

Para David Tircuit says his time in a packed, understaffed Chicago nursing home would last him a lifetime. His skin had broken down in three places, but he was given only one bandage and one shower in eight days. “I told the Red Cross, I gotta get out of here and take care of my body.” Access Living, the local center for independent living, rescued him the next day.

Some survivors avoided nursing homes, but only by the luck of the draw. Kimberly Cook’s escape was harrowing, but she was fortunate enough to cross paths with a priest who sheltered her and her attendant in his rectory (see Kim’s story below).

While nobody is sure exactly how many wheelchair users evacuated, most agree that the number is in the thousands. Those survivors still struggle to get equipment and supplies they need–Medicaid cards only work in the state in which they were issued, explains Russ, who was relocated to Houston. “I wear a urostomy bag and a colostomy bag, and I need tape and gauze, so a week of supplies is costing me $274.” With expenses like that, he’s burning through his $2,000 in FEMA relief money quick.

Then there is the overwhelming problem of securing accessible, affordable housing, already in short supply around the nation. People like Ginger Lane in Chicago have opened their homes to fellow wheelers, but it’s a stopgap solution, one that ultimately won’t prevent a surge in homeless people with disabilities.

And there is randomness in the safety net: David Barnes, a congenital amputee, promptly received Red Cross housing vouchers, a properly-fitted, new wheelchair free from The SCOOTER Store and even a free van donated by a TV station. But Jason Hurst, an SCI quad, couldn’t get the Red Cross to pay for even a single night in a dumpy motel (see Jason’s story below.)

Some say the safety net is kinder to more dependent survivors–those who don’t work and are already established recipients of government assistance. But Benilda Caixeta was one wheeler who didn’t make it out even though she had been receiving SSI and lived in subsidized housing. The rescue she waited for never came. (see below).

The ones who did escape, in many cases, sought out resources within the disability community when official relief channels failed them. And disability leaders, in turn, have worked for systemic change so that people with disabilities will be fully included in future evacuation plans. Other leaders have chastised the mainstream media for ignoring mobility issues in their coverage–coverage that could have brought pressure to bear on the powers that be (see below).

None of this, however, can change the past. “It’s a national disgrace,” says Susan Daniels, a wheelchair user and former government official. “It’s the only time in my life that I’ve ever been embarrassed to be an American.”

When Home is Not Home

By Jean Dobbs

It is overwhelming -- and I’m just so homesick,” says Jason Hurst, C5-6, pictured with his mother, Willmarine, as they view their ruined home for the first time.

It is overwhelming — and I’m just so homesick,” says Jason Hurst, C5-6, pictured with his mother, Willmarine, as they view their ruined home for the first time. Photos by Sabree Hill.

Jason Hurst had been in the wrong place at the wrong time before–that’s how he got shot in the neck 11 years ago. But in late August, everything seemed right. He and his family had struggled past bouts of unemployment to regain their financial independence. They had succeeded in sending two more kids to college. They had their health, a happy home and exciting new projects on the horizon. Unfortunately, their American Dream was about to capsize.

At first, Jason, 30, and his mother, Willmarine, 55, were planning to ride out the storm. Jason, a C5-6 quad, didn’t want to leave–he had just started grad school in urban and regional planning and was looking forward to studying ways to improve his city. The irony is not lost on him. “I guess if I ever get that degree, I’ll have a job, huh?”

Willmarine, a writer, had just started a new job and–before the hurricane strengthened–thought evacuating would be too disruptive, not only to her but to everyone in the home: another son, two grandchildren and a great-grandson. And of course there was Candy, their beautiful black Akita who shimmers with a silver undercoat.

Willmarine still wasn’t too concerned about the storm until she had a nightmare that convinced her they needed to get out of Dodge. “I had a bad dream that I couldn’t shake about us being covered in water,” she says. “I couldn’t get Jason up in the attic in time.” So she called on a church friend to take the kids and called her brother to take Jason and her with him to Dallas, where they had more family. Jason’s brother Jahmal stayed in the area but not in the house.

“They got me out, put me in the back of my uncle’s car,” Jason says. “I was in a manual chair–I had to leave my power chair, all my medical equipment.” And Jason’s uncle didn’t want the dog in his Cadillac. “I had to leave Candy–that’s the thing I regret the most.”

“You have to understand that in our minds, we were going to come right back,” Willmarine adds. “We gave the dog some food and gave her some toys to play with, filled up the tub with water. We thought we’d be back in three days.”

Traffic was hell–a drive that normally takes seven hours took 17. When they finally arrived in Dallas at 4 a.m., Jason began to absorb the reality of his sister’s fourth-floor walk-up apartment.

“Since I couldn’t stay with my sister, we went to a cheap little motel, about $40 a night, but we only had enough money for three nights,” he says. “My other sister loaned me some money for a fourth night. After that we tried to get the Red Cross to help out, but they said they couldn’t help us

[with motel vouchers].”

Willmarine and Jason protect themselves from mold as they stare at their drowned kitchen.

Willmarine and Jason protect themselves from mold as they stare at their drowned kitchen.

The Red Cross said the only way they could help was if Jason and Willmarine slept in the convention center on the flimsy cots. Being a big guy with a high injury, Jason couldn’t get down onto the cots, and even if he could, he would have developed pressure sores in no time.

They left the shelter not knowing where to turn next. While driving, they spotted a Salvation Army rehab/recovery facility. It was a long shot–this was not a hurricane shelter but a place where addicts were trying to get their lives together. They called to see if they could stay there.

That’s when they encountered Misty, the first of “many beautiful people” who helped them on their journey. Misty arranged for them to stay in a modest suite set up for visiting officers of the Salvation Army. “A lifesaver!” says Willmarine.

With a roof over their heads, they turned their attention to food, clothing and other basic necessities and made their way back to the convention center to see what was available. “We got the runaround in a lot of cases,” Jason says. “Things seem to be getting better now, slowly but surely, but the Red Cross–you ask them if you can use the restroom and they give you a list of phone numbers. Everybody gives you phone numbers, and you call the numbers, some of them don’t work–or they give you another phone number! It’s wild, man.”

Disgusted and disheartened, they pressed on. There was nothing else to do.

“Everybody who was in their face was able to get immediate help,” Willmarine says. “The Red Cross guy kept saying, ‘Did you sleep here tonight? If you didn’t sleep here, we can’t help you.’ I’m like, you’ve got to help us. There’re medicines and supplies and things that Jason needed, but they kept saying if you didn’t sleep in the convention center, then you couldn’t get any help. We asked, ‘Well, can we get food?’ ‘Well, yeah, you can come and get breakfast at 8 a.m., come back and get lunch at noon, and you have to come back and get dinner at 6 p.m.’ So you have to run back and forward–which is not like next door to anything–to get meals. And we didn’t have a ride, so we were at the mercy of whether or not my daughter could bring us. It put Jason in a position that he had to keep forcing himself to get in a car and transfer from his manual chair to a car, which was really hurting him–it was causing him more problems because his skin was breaking down.”

Hope Springs Electronic
With failing health, heavy hearts, no money and no help from the official charities, Willmarine did something she was loath to do: She sent a personal e-mail asking for financial help, then sent a variation of it to everyone she could think of, and prayed.

To Whom It May concern:
Presently, Jason (SCI, 11 years post) and I are homeless and living in a Salvation Army Shelter due to Hurricane Katrina. We had to leave our home, and all of Jason’s medical equipment (i.e., his hospital bed, electric wheelchair, Hoyer lift, etc.). Since I am in a public place using one of the laptops that they have made available to us, I will not be able to write a long letter explaining all of our business. But I am writing now because we need some financial help.

One of the bright spots: Some artwork was   unharmed.

One of the bright spots: Some artwork was unharmed.

Because we don’t live in one of the shelter sites, we are out of the loop of things that are going on. We have not been able to secure clothes or any basic funding. FEMA is taking a long time to help, and we are missing out on everything because we’re not able to get around. Jason is using an old manual wheelchair and I have to push him everywhere. This has been a strain on me also.

If you can help us, please contact us. Any help we can get would be appreciated. We are desperate, so I’m grasping at any and all past contacts. Normally, I would never find myself in this sort of begging position. But this has been anything but normal. People’s lives were totally shattered. Families were torn apart. Please help us.

Thank you and God Bless,
Willmarine B. Hurst

As the message spread through the Internet, it made its way into the hearts of some fine people. Casual Male Big & Tall sent Jason some extra-large clothes. A Dallas lawyer named Cynthia Thornton offered transportation for apartment hunting, first month’s rent and furniture. Curt Simonds of Allumed and Sara Moore of National Seating and Mobility came through with a loaner power chair. Marcie Roth and other disability advocates went to work on securing equipment and supplies overlooked in public evacuation plans. New Mobility publisher Jeff Leonard established the New Mobility Katrina Rebuilding Fund.

But it was Jason’s posts on pet sites and forums that lit up the message boards. Dozens, maybe hundreds, of people were searching for Candy, scouring web pages, following news of pets being shipped all over the country, calling shelters. “This guy is just so heartbroken about his dog,” wrote one searcher. “This family just needs a break,” typed another.

Jason himself was spending every free minute checking the leads people sent him, or posting on yet another site. “She’s my baby,” he says.

Starting from Scratch
As help trickled in, Jason and Willmarine searched for more permanent housing, but found accessible apartments were rare–they couldn’t believe how wonderful their modest home had been. “My house was on a slab and had a wide open floor plan–everything was at my disposal,” Jason says. “My bathroom was in my bedroom. I had tile so I could roll around easily. A roll-in shower. I could roll under my sink and brush my teeth. It’s been hard to find anything here–when most people say they have wheelchair-accessible housing, they mean that it’s on the first level. Even some of those have steps and you have to get out of your wheelchair once you get in.”

Finally, they rented an apartment that would suffice and began the task of equipping it for Jason. They needed a hospital bed, lifts, a shower chair–everything.

Jason started looking for attendants. His niece had been his primary PCA, but she was now in Cincinnati; his mom had been helping him since the storm. “It’s so hard to find a reliable PCA,” he says. “Besides my niece, I had a lady I worked with for five years. That was the longest I had a PCA–I’ve had five PCAs in as many months sometimes. To find someone who’s going to come into your house every day–it’s a whole other level of being pulled out of your comfort zone.”

And, reluctantly, Jason started thinking about a future in Dallas, one with his career goals on the back burner. “I wanted to start a nonprofit organization–I was going to try a three-in-one: help the city fight blight, which is a problem in New Orleans, and at the same time take those blighted properties and merge affordable housing with accessible housing.

“Now school is kind of the furthest thing from my mind,” he says. “I have to get settled in, get acclimated to where I’m at, get my feet under me and see if I can find some kind of work, some way to generate an income. I’ve got to get things together so my little brother and sister who were away at college when all this happened will have somewhere to come home to.”

Where Is Home?
But of course, their real home is in the middle-class African-American neighborhood of Pontchartrain Park, in New Orleans. So when they learned that they could return to their zip code on Oct. 5, Jason and Willmarine approached some of their “beautiful people” to borrow an accessible van. They’d heard that Candy had been spotted not far from their house, running wild. Sickened that she could end up one of the dogs being shot, they wasted no time.

Jason’s skin had not healed, and he had dysreflexia from an unknown cause, but when they got the van, they drove all night, arriving the morning of Oct. 6. After personally visiting the local animal shelters–no Candy–they rolled down a bleak row of broken, moldy homes to their own.

The orange spray-paint said their house had last been checked Oct. 3; the watermarks said it had stood in 6 feet of sludge. With much trepidation, they held masks to their faces and opened the door.

The stink was overpowering, but it wasn’t as awful as the sight. Waterlogged photos still clung to the walls, perhaps suspended by the thick growth of blue-green mold. Books rotted in their spines, and personal belongings were clumped together in sticky, unnatural groupings. There was some good news: A few pieces of original art were unharmed, and one stash of family photos had floated in a plastic bag–as had a laundry basket of clothes.

For hours, they culled what they could from the debris, taking breaks to breathe clean air and drink bottled water, but they couldn’t even get into one room because of heavy furniture blocking the door. The forlorn pile of salvaged items included a handful of trophies and ribbons, a graduation tassel, a prom dress, several collectible Barbie dolls, some scraps of writing, a rusted camera, the damaged photos and the somehow untouched artwork that Jason had commissioned. Ruined was the computer full of their poems and papers, signed books by Molefi Asante and Ivan Van Sertima, their degrees and diplomas, and so many of the other creations and mementos that tell the story of a family’s life.

And how would they ever rebuild? “We own our house,” Jason says, “but with me being out of work–I had just started working at a nonprofit organization part-time–we didn’t have the money for the insurance. We were just about to get the insurance policy up again right before this happened. I was going to send that in the next week. Then this happened, and it knocked all the wind out of my sails.”

Willmarine feels equally deflated. “When I came up here [to Dallas], I wished I could have someone hypnotize me for just an hour so I could just forget. I try not to think about that whole situation and the totality of it. People say, ‘Just start all over.’ But from where, from what?”

“It is overwhelming–and I’m just so homesick,” Jason says. “But I think I could deal with it all if I could just pet my dog.”

Atlantis Sinking: A Story of Escape

By Kimberly Cook

The night before the storm, we were told to evacuate St. Bernard Parish, so I called Miss Pat. She told me, “Don’t worry, I’m on my way.” She took me to her house, where we planned on riding out the storm.

Her husband got really concerned for my safety. He told Miss Pat, “Look, we can get on the roof if anything happens, but what about Kimmy [and her wheelchair]? We can’t get her on the roof.” So we went to her daughter Juanita’s house, on the other side of the canal and stayed with her that following Sunday and Monday morning.

The storm hit, and we thought we were going to be OK. But then the levee broke. Water started slowly coming in to Juanita’s house so, again, for my safety, my family decided to take me to the next-door neighbor’s house, which was a two-story house. They took me up, and Juanita’s boyfriend, Derek, carried me all the way up to the second story, where they had a bed waiting for me.

We stayed there about a day, and in the morning we noticed that the water was continuing to rise. So we flagged down a coast guard boat, and they put me through the window of the two-story house, and the coast guard lifted me into the boat, but he didn’t realize that the boat was on top of Miss Pat’s car. With our weight in the boat, the propeller got hooked into the windshield, so we couldn’t move. The coast guard man said, “I’m sorry, but I’m going to have to rip the car in half,” so in order to get us free, he put the motor in gear and sliced the top of the car.

While we were in the boat, we noticed a lady floating on a door. She called to the coast guard and told him, “I’m all right, but there’s two babies floating in an inflatable swimming pool.” The coast guard officer told the lady, “I’ll go drop these people off at the bridge and come back and get the babies.” But that’s when Miss Pat looked at the coast guard and told him, “No, we’re OK–you go back and get those babies.” So he turned the boat around and went and got the babies. One was no more than a couple of months old, and one was about 2 years old.

Then the coast guard took us to the bridge, where I got off the boat into a truck. The truck took me to the flat part of the bridge, and we handed the babies over to the Red Cross. We spent 10 hours on that overpass, with no wheelchair or water. Then another truck came and got us and took us to the Superdome, where they allowed Miss Pat’s family to get off the truck and go inside. But when the army personnel saw me, they told Miss Pat and me to go around to the back of the Superdome. Miss Pat called her family and told them, “You guys go on–I’ll catch up with you later.” She assumed we were going to meet up again later. But then the Army and the police started fighting, and after having a heated discussion for about two hours, the decision was made that they weren’t taking any more evacuees at the Superdome. So the army truck took us to Kenner, where we sat underneath a bridge for four hours. After that, an ambulance came and got us and took us to Baton Rouge, where we stayed at Louisiana State University for four days.

While we were at LSU, we met a wonderful priest named Father Sam Maranto. He was quite impressed with me, and after talking for a day or two, he gave me his business card and told me if there was anything he could do to help to give him a call. On that very same day he gave me his business card, we were told we were being transferred to Lake Charles. And we only stayed there for about a day. They came to us in Lake Charles and asked us if we wouldn’t mind going to Texas. Miss Pat and I immediately looked at each other and we started scrambling for Father Sam’s card. We found it, we gave him a call, and he took two hours to drive all the way from Baton Rouge to Lake Charles. He picked us up, drove another two hours back to Baton Rouge and put us up in the Majella house, right on the side of St. Gerard’s Church. And that’s where we’ve been staying for the past three weeks.

Today we’re going to get me fitted for another electric wheelchair. Before Katrina, I didn’t want for anything. I had an electric wheelchair, so I was able to get around on my own. Since Katrina, I’ve pretty much lost everything. I’m looking forward to having my mobility back. Being in a manual wheelchair, it feels like somebody cut my legs off.

Father Sam is a lifesaver. If it weren’t for him, we’d still be in a shelter somewhere. I didn’t mind the shelter, but I was ready for a change. Those cots are hard–I was ready for a nice, soft bed.

It’s wonderful here. Father Sam fixed up a nice big room for us, two beds. We have a little kitchen, and we have all the food we could eat and all the drink we could drink. So it’s like home, and best of all, we have a real chapel right outside our room.

There are so many things I had to let drown, including my legs, my chair. It’s been one big horror movie. But it’s all over now. We’re safe.

At press time, Kimberly and Pat and Pat’s husband, Harold, were looking for permanent housing in Baton Rouge. Medicaid will replace all of Kimberly’s equipment. United Cerebral Palsy of Greater New Orleans will continue to pay Pat’s salary as a professional caregiver. Kim and Pat are looking forward to starting a new life and give special thanks to Father Sam for all of his kindness.

Lost to the Storm: One Who Didn’t Make It

By Jean Dobbs

Benilda Caixeta called everyone she could think of when she realized the transportation service had abandoned her to the hurricane. As the storm raged and the phone lines cut in and out, panic crept into her voice.

Then the water rushed under her door.

The people who loved her tried to orchestrate an evacuation from all corners of the United States, but New Orleans was one-way out and every local contact had already escaped the city. As the water rose and hope dwindled, Benilda’s distraught attendant, Rita, revealed that she couldn’t swim.

Finally Rita faced a devastating decision as she spoke on the phone with Susan Daniels, a friend of Benilda’s and a longtime disability advocate. Daniels recalls, “I said do what you can for Benilda, but don’t just stand there and die. If you can’t do anything more, save yourself, for your family’s sake. Two dead is not a better solution.”

At the last possible minute Rita did seek higher ground and eventually was rescued. But in the days since Benilda’s body was recovered, Rita has been inconsolable. Daniels has tried to comfort her and reassure her that she had no options. “She did the best she could,” Daniels says. “She’s been very upset about it.”

Daniels, too, is heartbroken that the love she and others had for Benilda wasn’t enough to save her, their scramble cut short by an awful silence as the phones went dead. Her voice softens with the sadness of losing a friend of 25 years. “Benilda had the sweetest look,” she says. “She looked like Carmen Miranda–who by the way was her great aunt–and had long, silky, black-as-night hair, just lovely to look at. She also spoke Portuguese and French and Spanish and English.

“When I first met her–and her physical abilities were more than when she died–she was also an accomplished seamstress,” recalls Daniels. “She could make clothes just from little drawings–she didn’t need patterns. And the people who loved her would always recognize that there was some essential sweetness about her, some gentle sweet spirit inside. I never met anyone who met Benilda and would have said she was a rascal. People have said that about me, but they would never have said that about her. She was just lovely and soft-spoken and demure. She was a woman of beauty and courage who accepted her life with grace and compassion.”

Clearly it was not her attendant’s fault that Benilda drowned. But who is responsible for the death of this strong Brazilian woman who chose a life in the United States because of her progressive muscular dystrophy?

Says Daniels, formerly with the Social Security Administration and a disability policy expert: “It was a colossal demonstration of incompetence in government. The city, the state and federal government didn’t have a clue as to what they were doing, and I imagine that most of the people who died in the storm died because they couldn’t execute their evacuation plan.”

Benilda, who volunteered at a center for independent living, surely would have had such a plan. She was connected to people and information, a college graduate who made the most of life near the poverty line. “She was not an incompetent person–she was very competent, very organized and quite self-directed,” Daniels says. “I believe she had a plan, but the plan didn’t work. The people who were supposed to come didn’t come, and then at that point there were no options left because things went downhill very rapidly.”

Is there a lesson here for others? Daniels’ voice gains passion as she responds, releasing some of the anger that has plagued her in recent weeks. “The government is not a reliable safety net. If you are in need of life-saving services, you need to be thinking on your own and have your own plan, either to get out of harm’s way or to get the equipment or treatment you need. A lot of people died because they couldn’t plug in their respirators. Well, if you have to depend on the government to provide your electricity, you’re dead.

“In a situation where everybody is in panic, you have to have your own plan and you have to execute the plan early–you can’t wait till the last minute. Because last-minute requires all kinds of other skills, like going up a flight of stairs or being able to get into a certain kind of vehicle, all of which Benilda really couldn’t do. Families and friends are really the safest thing for you, people who love you. Safety is in love, not in government.”

Helping Our Own

By Josie Byzek

As leaders of disability groups watched the waters of Hurricane Katrina pour into the Gulf Coast states, they had one question on their minds: “What can we do to help Katrina survivors with disabilities?” Here is a small sampling of how they answered that question.

Keep Those Wheelchairs Rolling In
Centers for independent living and other disability groups gathered so much equipment for Katrina survivors with disabilities that in September, Mack Marsh, the Shreveport CIL’s director of independent living services, cried out, “Call first! We’re running out of warehouse space!”

Taking the prize for stuffing Gulf Coast CILs’ warehouses are California’s independent living centers, under the leadership of Michael Collins. “We know that many people who receive new replacement equipment, or recover from an injury or illness, keep the older items in case they’re ever needed. The items gathering dust in garage and storage units around the state could make a real difference to a survivor who cannot move without assistance at a shelter,” said Collins, director of California’s State Independent Living Council.

United Spinal Association, formerly Eastern Paralyzed Veterans, got around the stuffed-warehouse problem by donating a 33-foot lift-equipped bus packed with 30 manual wheelchairs, two power wheelchairs, two hospital beds, a Hoyer lift, 30 wheelchair cushions and a bunch of canes, crutches and walkers–all brand new. United Spinal also sent down a wheelchair tech to fit the chairs to the new recipients. The donation was made to New Orleans Resources for Independent Living, which is currently sharing space with the Baton Rouge CIL. United Spinal director Gerard Kelly said he was “ecstatic” to be able to put together such a package.

And the winner of “most brand-new wheelchairs donated by a for-profit business” is most likely The SCOOTER Store, which donated over $1 million worth of wheelchairs, walkers and canes directly to the American Red Cross and other relief organizations. “‘Always do the right thing’ is The SCOOTER Store’s motto, so this was an easy decision for us,” said Doug Harrison, founder of the company.

The Wheelchair Foundation, a nonprofit organization, donated some 3,200 wheelchairs to the American Red Cross. “We are shipping every available wheelchair in our inventory to Louisiana, Mississippi and other states to help our fellow Americans in the time of crisis,” said David Behring, director of the Danville, Calif., foundation.

Creating Better Plans
When Katrina hit, where were the wheelchair accessible shelters with back-up generators and lift-equipped vans to get people there? This is one of the many questions our community’s own emergency planners are putting to our nations’ governments–local, state and federal alike.

Under the direction of Marcie Roth, the National Spinal Cord Injury Association worked with Homeland Security chief Michael Chertoff on a memo to get FEMA to authorize deployment of disability specialists in the affected areas. The specialists are charged with finding durable medical equipment, accessible housing and other necessities. Roth called the memo a breakthrough, “both in what it says and in what it signals.” She hopes it signals smarter policy decisions to help save the lives and independence of disabled people caught in disasters such as monster hurricanes.

The National Organization on Disability, a long-time advocate for better emergency response plans, sent four assessment teams to the Gulf region to investigate and document how response and recovery worked–and didn’t work–for people with disabilities. NOD then used the data to make a case for the formation of an independent task force of disability and emergency management leaders. “We need to formulate and implement thoughtful new policies that will help ensure the safety and speed the recovery of people with disabilities in future tragedies,” said Dick Thornburgh, a founding director of NOD and governor of Pennsylvania during the Three Mile Island nuclear disaster.

Lex Frieden’s been fielding phone calls from Gulf Coast residents with disabilities ever since Katrina blew into Louisiana. “We started right away. We got 15 staff answering the phones, taking up to 500 calls a day,” says Frieden, director of the Houston-based organization, Independent Living Research Utilization. ILRU is helping disabled evacuees secure such necessities as accessible housing, equipment and medications.

Frieden also chairs the National Council on Disability, which advises the federal government on disability policy. In April, NCD submitted its report, Saving Lives: Including People with Disabilities in Emergency Planning, to the administration. “The report was just in the process of being implemented when Katrina occurred. Therefore I’m not sure the Department of Homeland Security benefited from all the recommendations,” says Frieden. Still, he feels solace that at least one government entity read the report–his own city’s. When it looked like Rita would devastate Houston, the city got hold of every lift-equipped vehicle it could and used them to drive disabled people to safety.

Katrina and Media: By the Numbers

By Josie Byzek

The media saved a lot of lives during the Katrina crisis by alerting Americans to what was happening in the affected areas. But the media fell short when it came to reporting about the lives of people with disabilities.

A quick search in Google’s news engine shows 297,000 media reports dealing with Hurricane Katrina. Type in “Hurricane Katrina” and “wheelchair” and the number of reports drops to 1,800 hits. Use the word “disability” instead of “wheelchair” and the number drops down even further to a measly 815. But type in “Hurricane Katrina” and “pets” and the number jumps up to 5,820. This search was done back in October, so the numbers of hits may have changed some since then.

“We felt the mainstream press weren’t really talking about our community enough, and we were getting to the point where the press was writing about pets. Pets? That really got to me,” says UCP’s press secretary, James Baker. “A lot of our affiliates still haven’t found all our clients, and this is just our people. And the amount of stories we heard about people being turned away from shelters because they were disabled … shelter after shelter … just that fact shows there’s a significant problem that needs to be addressed, and one way to address that is through the press,” says Baker.

It’s not that Baker doesn’t think pets deserve every line written about them, but he wishes reporters had written more stories about what was happening to people with disabilities before they went on to animals. Although he’s seen some great stories in the media about individuals with disabilities, Baker hasn’t seen many about systemic problems such as shelter inaccessibility. In part to address this hole in the Katrina coverage, Baker organized a Sept. 19 press teleconference on disaster and disability, but the media was pretty much a no-show.

Did our community somehow drop the media ball? Baker doesn’t think so. “We couldn’t provide hard data, accurate concise numbers about Katrina survivors with disabilities, but we took specific stories about people who are affected and shared those. We reacted very quickly.” So the responsibility rests on the media, then? “Overall I think the media could have gone deeper,” he says.