November 15, 2012

FOR PEOPLE with disabilities, Hurricane Sandy and its aftermath poses unique dangers.

The storm has also exposed how--as in so many other ways that affected poor and working class New Yorkers most of all--the government was disgracefully unprepared to protect the disabled from life-threatening danger, nor provide them with the services they needed in the days and weeks following. Once again, tasks that should be the responsibility of the state have fallen on volunteers.

Take Nick Dupree and his partner Alejandra Ospina, disability rights activists living in lower Manhattan, who lost power during the storm. On her blog, Crystal Evans-Pradhan recounted how she and a group of activists and others coordinated an effort via social media to save Nick's life.

Both Nick and Alejandra rely on wheelchairs, and Nick depends on a ventilator to breathe. When the power went out as a result of the hurricane, the two were stuck 12 flights of stairs above ground level--without electricity to charge batteries for the vent that Nick needs to stay alive, and with no landline and bad cell phone reception.

Nick Dupree (Little Free Radical)

Luckily, Crystal, who lives near Boston, saw Alejandra's plea for help on Facebook and was able to mobilize a network of people to raise hundreds of dollars and secure the help of volunteers to supply Nick with batteries and distilled water. This was no small feat. During the several days that power was out in lower Manhattan, Nick required a new car battery every 12 hours, and each of these heavy, expensive batteries had to be carried up 12 flights of stairs.

Reading Crystal's account, it becomes increasingly clear that Nick may have died had he been forced to rely on the government for relief. Crystal had talked back and forth with FEMA's Office of Disability Integration and Coordination for hours without any luck, and after she traveled from Boston to New York with batteries and supplies, the Fire Department refused to help carry the items up the stairs to Nick and Alejandra's apartment.

Because Crystal also relies on a wheelchair, her friend Sandi Yu had to carry the supplies up by herself. Eventually, Crystal emailed FEMA to let them know that the potential crisis had been averted--no thanks to them.

In a second post, Crystal quotes Nick, who explains why he chose not to evacuate prior to the storm. Any hospital he went to would have had to switch to a hospital ventilator, which nearly killed him four years ago:

I wish there was a hospital I could trust to "first, do no harm," but right now, I just trust them to: a) put me on a ventilator that will maim or kill me; b) not have enough staff to feed or medicate me, because they have genuine emergencies on their hands. I am from Mobile, Alabama and was there until 2008; I tried to go to USA Children's hospital when Hurricanes Georges and Opal hit the Gulf Coast, and no beds or medicine were forthcoming (plus, the hospital lost their electricity, stranding us in our wheelchairs staring at dead elevator doors for hours during Opal), which forced us to un-evacuate, go back home.

And as Crystal points out:"[M]any of the 'evacuation centers' in the area were not wheelchair accessible, if we got him to one of those as the Red Cross had suggested." This included centers with makeshift ramps too steep for many wheelchairs, as well as one with "a sign telling people to ask security for access assistance, except that security is inside at the top of the stairs."

It is inspiring that individuals came together and went to great lengths to make sure Nick's ventilator didn't run out of batteries during the several days he was without power. But it is a case of criminal neglect that the city did not have disaster plans in place for Nick and others like him who depend on electricity to run lifesaving medical devices.

Mayor Michael Bloomberg waited nearly two weeks to announce that he was sending medical personnel door to door to check on people like Nick and Alejandra. Without the ad hoc efforts of volunteers, this would likely have been too little--and far too late.

THE CASE of Nick Dupree is just one example of New York City's negligence when it comes to meeting the needs of disabled residents. Nor should it come as a surprise.

Just recently, a judge granted class action status to a lawsuit filed by advocates for the disabled that, according to DNAinfo.com, alleges that "the city does not have adequate plans in place to help the disabled population evacuate, find proper shelter or find electricity for medically necessary devices in the event of power failures." The lawsuit was filed last year, in the wake of Hurricane Irene.

For the 900,000 New Yorkers with disabilities, marginalization is not just an issue they face during emergencies like Hurricane Sandy. It's a fact of everyday life.

One of the biggest issues facing the disabled, particularly those in wheelchairs and others with impaired mobility, is the lack of accessible transportation. In New York, just 2 percent of taxis--less than 250--are wheelchair accessible, in a city with some 60,000 people who use wheelchairs.

By comparison, London requires all of its taxis to be wheelchair accessible, according to Jesse Lemisch of the Nation. Most of the subway system is inaccessible to those in wheelchairs, according to Lemisch:

Under the Americans with Disabilities Act, the United Spinal Association has brought suit against the Metropolitan Transportation Authority for inaccessible subway stations: "It is an absolute disgrace that 20 years after the ADA was passed, more than 80 percent of the subway stations in New York are inaccessible," says attorney Julia Pinover.

Buses are the most widely accessible form of transportation for New Yorkers in wheelchairs--but as a result, cuts to bus lines have disproportionately impacted the disabled.

THE FULL impact of the storm on the disabled is not yet fully known, but DNAinfo reports that some families have lost thousands of dollars in equipment, including electric wheelchairs and devices that allow people with conditions such as cerebral palsy to communicate. Replacing them will involve navigating the bureaucracy of FEMA and Medicaid.

Compounding this, organizations that serve the disabled are stretched thin, according to DNAinfo:

Amy Bittinger, director of Family Support Services for United Cerebral Palsy, said they have dozens of families in tough situations. One client is a disabled man trapped on the fifth floor of a building, where his family moved to avoid flooding. Unlike Schevon, who weighs just 90 pounds, no one is able to carry him down the stairs until the elevator is repaired. Some adults without electric wheelchairs have been unable to return to classes. The agency may also have to dig in to its own charitable funds to help clients who don't receive federal assistance. The agency had to move 41 clients to temporary shelters from its locations in lower Manhattan during the storm and is still waiting for full power at its offices on Maiden Lane.

For the mentally disabled, the disruption to their daily routines and the lack of a prompt, coordinated comprehensive response from city, state and federal officials, has caused them significant distress.

Maria Vultaggio wrote in the International Business Times about the storm's impact on Felicia, her 21-year-old sister with Autism: "For those who know people with the learning disability, many of them don't like change. In fact, not only do they not like change, they find it virtually impossible to deal with change."

After days without power, Internet or cable, which Felicia relies on as part of her routine: "[S]he seemed to have reached her wits' end, and nothing we said could make her feel better. Her constant cries were starting to wear the family down."

CBS News interviewed Kirsten Nataro, who works on Long Island at a group home for the mentally disabled that went without power for several days after Sandy hit. She said that the disruption to the daily routine "just rocks their world to a different extent than I think a lot of people understand...regiment and schedule makes it a lot easier for them to function on a daily basis." She also worried about the chance of accidents in the darkened home.

According to the Associated Press, when medical personnel went door to door in the Rockaways on the second weekend after the storm hit, they found several residents in just the first three hours who had to be evacuated to a hospital. As AP reported:

Joseph Williams said that the home care aide who normally helps look after his 27-year-old son, who has cerebral palsy and needs a wheelchair, hasn't been able to visit since the storm. After days of trying to take care of him himself, in a flooded high-rise with no utilities, Williams gave up and carried him down seven flights, so he could be evacuated to Brooklyn.

With thousands still without power--and many of those likely to remain in the dark for several weeks to come--the potential remains for new crises and hardships facing the disabled in the disaster area to emerge.

There is also the potential for the storm itself--and the government neglect felt by some of the poorest, hardest-hit areas--to saddle a new generation with mental disabilities and impairments such as post-traumatic stress disorder, anxiety and depression. According to the New York Daily News, children living in areas still without power face trauma that could have a lasting impact.

It is an outrage that the city, state and federal governments did not take steps to prevent the storm and its aftermath from having a disproportionate impact on residents with disabilities. Like poor and working-class New Yorkers, in the richest city in the world, those with disabilities have been left largely to fend for themselves.