The events of September 11 have changed lives, and people with disabilities are no exception. The challenges they faced before have been amplified by the loss of their homes, their mobility devices, access to public transportation, and the tools and services that enable them to live actively in the community.

The stark reality of the impact of the disaster became apparent to advocates with the network of Centers For Independent Living in New York the day after the attack. Brad Williams, Executive Director of The New York Statewide Independent Living Council (NYSILC) says a myriad of problems faced people with disabilities on the day of and following the collapse of The World Trade Center (WTC.). Getting out was the first problem. There was no cohesive emergency plan for assisting people with disabilities to evacuate. Then there is the destruction of some of the transportation and housing infrastructure near ground zero. In an emergency, people with disabilities do not have access to the same options as non-disabled people.

Many current consumers have new needs for multiple services. Also, people with disabilities who never previously utilized independent living services now find their independence and employment in jeopardy. Furthermore, the injuries people experienced in the attack have resulted in an increase in the number of people with a disability. It is projected that at least 3,500 people who were treated and released have acquired a disability, yet when disaster workers were asked if any of the over eight thousand people treated were people with current or newly-acquired disabilities, the answer was “No.”

The Red Cross and other agencies attending to victims of the disaster are not prepared to meet the specific needs of people with disabilities. Most disaster-relief agencies ask victims to come to them, yet many of the Red Cross sites weren’t accessible. Under the circumstances, many people with disabilities weren’t able to comply.

The Center For The Independence Of The Disabled In New York (CIDNY), located two miles from the WTC in Manhattan, has tripled their call volume since September 11. CIDNY has 11 paid staff, woefully inadequate to meet

the growing need.

The Three Phases

Katinka Neuhof, Outreach and Training Specialist at CIDNY, says she knows of three deaths of people with disabilities either during or after the attack. But, beyond that, she says there have been three phases people have gone through during the past few weeks. First, in the initial days following September 11, many people with disabilities who live in the subsidized housing in Battery Park (near the WTC) had problems evacuating. Many buildings lost power and some disabled residents stayed in their apartments waiting for someone to come and rescue them.

People were afraid to open their windows because of the toxic fumes and asbestos released by the collapse, and were afraid to go out in the hallways of their buildings because there was no electricity. One example was an 86-year-old woman who is post-polio. She waited with no electricity and little food in her refrigerator through the first 24 hours.

Finally, she opened her window and hollered for anyone who could hear. A fireman at ground zero saw her and came with four of his colleagues to take her out of the building. She did what she could, says Neuhof. People with disabilities have been told when something happens to stay in place. They need to learn to take more responsibility.

NYSILC’s Williams seconds this: Lesson one, be involved in your community’s emergency evacuation plan.

Checking in is a theme that pervades the second phase. People with disabilities depend on routine, and their daily routines have been severely disrupted Attendant care was interrupted in some cases because of disruptions in transportation or due to roads being blocked to anyone but emergency workers. Interruptions also occurred when some people needing attendant care were relocated to temporary housing.

Neuhof facilitates a support group for people who have survived and are dealing with the aftermath. They feel a sense of isolation, she says, adding, “They say, ‘No one came looking for me, no one called.'” The group members have begun setting up their own registry to help keep in touch and keep track of people in case something else happens.

Neuhof says the third phase, the long-term impact, is just beginning to become apparent. People who had respiratory conditions before are finding them exacerbated by all of the chemicals in the air. “You can still smell the smoky, chalky odor at night,” Neuhof says, adding, “Some people are having to be hospitalized as a result.” Then there are those who are newly disabled with injuries from falls, burns, blows to the head, amputations; for these people, the long-term impact is yet to be seen.

A Double Whammy

Williams says people with disabilities have been given a double whammy. First the attack on the WTC and now,

“Governor Pataki wants to cut the budget for the network of New York CILs by $1 million this legislative session,” at a time when the need for service is increasing.

There is another concern expressed by Barbara Knowlen, an advocate who lived in Minnesota before moving to New

York two years ago. Based on her experience with the Minnesota and North Dakota floods, she noted, “I am concerned that standard ‘helping’ agencies will not consider the independence of people with disabilities and will place individuals in nursing homes as an expedient solution.” She adds, “Even though the floods were nowhere near the magnitude of the WTC disaster, it took the Independent Living Centers in the Grand Forks and Fargo areas over two years to find all the people relocated to institutions and nursing homes across the country.”

In the days following the attack, organizations and individuals across the country reached out to help. The Eastern Paralyzed Veterans Association sent medical supplies and contacted other organizations for contributions as well.

An organization in Illinois, called Seeds of Hope, made buttons with flags and ribbons on them. They sold the buttons and made $1500. When they called CIDNY and said they wanted to contribute the money to a family, Neuhof had just the right one. “A mother and her 16-year-old daughter who has spina bifida were forced to leave their home in Battery Park. They were given vouchers by the Red Cross to find alternative housing,” she explains. They also have a dog, which made it difficult to find a hotel. Finally, they found one, but the room cost $150 per night. CIDNY connected Seeds of Hope with this family. “They have continued to communicate and even more than the money, the family says they appreciate the organization’s members sending cards and letters and calling to check in,” says Neuhof.

In the wake of the events of September 11, the intensity of life in New York for people with disabilities has stayed at a high level. “We aren’t just living this disaster every day, we’re working it too,” says Neuhof. She says the staff at CIDNY are taking care of themselves as well. They’ve formed a peer support group and have brought in a therapist to assist the staff in dealing with their own issues resulting from the attack.

If you wish to contribute to CIDNY, call (212) 674-2300 or write The Center For The Independence Of the Disabled in New York (CIDNY) at 841 Broadway, Suite 205, New York, NY, 10003.