If you have a disability, the forces of nature can be meaner to you than anyone else. But you can fight back. Be prepared.
This article originally appeared in the November, 1994 issue of Mainstream magazine.
Floods, brush fires, earthquakes, hurricanes, riots - the last few years have seen more than their fair share of disasters both natural and man-made. In especially hard-hit areas such as Southern California, the jokes about plagues of locusts and Las Vegas beachfront property have long since worn thin.
Disaster-prone areas such as southern Florida and California are home to large concentrations of persons with disabilities, of whom increasing numbers are living either completely on their own or with minimal outside support. Just because they may have independent lifestyles under normal circumstances, however, doesn't necessarily mean they are well-prepared for emergency situations, any more so than the population at large.
In some ways, apparently, disabled people who live independently are actually better at handling disasters than their non-disabled counterparts.
In a study commissioned by the U.S. Geological Survey after the 1989 Loma Prieta earthquake in California, researchers Mansour Rahimi and Glenn Azevedo support other studies in concluding that persons with disabilities "have a psychological advantage" which makes them less likely to become injured or to panic during and after the quake, "since they negotiate with altered and sometimes difficult physical and environmental limitations on a daily basis." Yet at the same time the study also concludes that "physically disabled persons may have less opportunity to access their personal items and emergency medical supplies after the shaking has stopped."
In the aftermath of the January earthquake centered in Northridge, California, according to Norma Vescovo of the Independent Living Center of Southern California (ILCSC), one of the biggest problems was the failure of electrical power, which had serious and possibly dangerous repercussions for those dependant on motorized wheelchairs, respirators, and other pieces of equipment.
Ultimately, problems of this kind are intrinsic to the individual disability - it is common sense for a person who depends heavily on electricity to have a reserve source (such as a fully charged battery) on hand at all times in case of power failure. In these situations it falls on the individual to anticipate certain dangers and to prepare for them.
But what about situations over which the individual has little or no control, such as evacuations or emergency supplies? In the aftermath of earthquakes, hurricanes, or other disasters, many disabled victims have criticized disaster-relief organizations such as the Red Cross and the Federal Emergency Management Agency (FEMA) for being ill-equipped to deal with their unique concerns.
When forced from their homes, persons with disabilities may encounter evacuation centers that are fully or partially inaccessible. Distribution of food, water, and other supplies may be conducted from inaccessible locations, with no means of getting supplies to persons who cannot reach the centers. Frequently, the procedures of agencies do not take persons with disabilities into account - or, if they do, staff members (often hastily trained volunteers, sometimes from other countries) are not aware of it. In addition, dealing with disaster-relief bureaucracies may result in a tangle of red tape.
Lucy Hagen, an actress and songwriter who uses a wheelchair, was forced to leave her fifth-floor apartment after the Northridge quake because of damage to the elevator. When she applied to FEMA for emergency housing assistance, however, she was turned down because the building itself had been "green-tagged" (inspected and judged to be safe for occupation) - this, after having been assured at first that she was eligible for aid. It took many frustrating days of phone calls to FEMA before the agency relented.
"They're not thinking about people with disabilities," Hagen says, "they're thinking about the overall public. But people with disabilities are part of the public and that should be taken into account."
Relief agencies, says Norma Vescovo of the Independent Living Center of Southern California (ILCSC), "are geared toward dealing with a lot of people rapidly - they're not really equipped for individuals with disabilities." In the case of FEMA, she does give the agency credit for its efforts to respond to disability concerns and to correct its own mistakes. Since the quake, the ILCSC has been meeting with FEMA representatives to determine how to serve disabled disaster victims better in the future.
The Red Cross is another story. Vescovo is severely critical of the Red Cross for what she views as its ignorance of disability issues and its unwillingness at the national level to work with disability organizations. Complaints received by the ILCSC refer to inaccessible shelters, unreachable supply distribution points, and poorly trained volunteers (in a number of cases, disabled people were turned away from shelters and told to go to hospitals by staff members who assumed that they were sick or injured), among other problems.
It is not the first time the Red Cross has come under fire. The same sort of criticism was heard in 1989 after the earthquake in Loma Prieta, California, and in 1992 after Hurricane Andrew in Florida.
As an international body, the Red Cross "doesn't think they're covered by the Americans with Disabilities Act," says Pat Erwin, director of the Miami-based Disability Services for Metro Dade, which fielded complaints following the hurricane.
Erwin believes that the group's practice of rotating in workers from other countries forces disaster victims to deal with staffers who may hold different cultural assumptions regarding disabled people.
Pat Erwin also thinks there is too little communication between the Red Cross and local emergency-management agencies, and that the group does not make it clear enough what disabled individuals should expect from it.
"The question is, what is the responsibility of the Red Cross, in the aftermath of disasters," she says. "If it's just to come in and give out cookies and doughnuts, we need to know."
In response, Red Cross spokesperson Gisele McAuliffe says that disaster preparedness begins at the local level, and that the organization must work with what is available in selecting and equipping evacuation centers.
The Red Cross, in cooperation with local agencies, maintains a list of possible shelter sites in each community. "We look for a shelter - a school, or another appropriate location - that meets certain criteria," including accessibility, McAuliffe says. However, because of different resources in different communities and circumstances related to the emergency itself, "it may not always be possible to find a shelter that is completely accessible."
When a site is selected, it not only must be able to house a large number of people, but also must be checked for safety. "For instance, after an earthquake you have to make sure the shelter you've identified is structurally sound. So, you may have selected a shelter that you had planned to use for people who are physically disabled, and then you have to change your plans at the very last minute because that site has been affected by the disaster."
McAuliffe stresses the need for disabled people - like the rest of the population - to contact their local Red Cross chapter, as well as other agencies, to learn what they can do to be as well-prepared as possible in the event of a disaster. And "to talk about whatever special arrangements may be available in the community to assist them."
Many localities, in fact, require persons with disabilities "to register with them so that local emergency officials know who they are and where they live and what their circumstances are." Even if it is not required, it is still important to educate yourself about local resources and to make the appropriate agencies aware of your existence, she says.
To this end, the Red Cross has prepared two booklets - one for disabled individuals, the other for attendants or other care providers. The booklets contain general advice on preparedness for different types of disasters, as well as tips related to specific disabilities.
If disaster preparedness is a "team effort" as McAuliffe says, then the issue returns to one of personal responsibility.
In places like Southern California and Florida, a lot of people were caught woefully unprepared for disaster. Many of them - disabled or not - no doubt find it easier to blame huge, faceless organizations than to admit their own mistakes in not planning ahead.
Living independently involves taking charge of one's own life - something for which persons with disabilities, historically, have not been conditioned. For disabled individuals, then, lack of preparedness could reflect an expectation that others will take care of them, or it could indicate an exaggerated sense of independence and an unwillingness to rely on anyone else for anything.
Or, on the other hand, it could just be part of the universal human tendency to avoid thinking about possible dangers.
So where does personal responsibility begin?
The Midwestern floods of 1993 provide an interesting example of how too much independent-mindedness can actually hamper relief efforts. Most of the flooding occurred in rural areas whose inhabitants take great pride in their self-sufficiency.
Karen Funkenbusch, a resource development specialist at Services for Independent Living in Columbia, Missouri (which provided extensive relief services to persons affected by the flooding), says their efforts often met with resistance from people who "didn't want to believe that they needed assistance - food, shelter, outside help."
Her organization found that the best approach was to let flooding victims know assistance was available, but to let them decide for themselves what sort of help they needed and how much. Many flooding victims, after all, were farmers trying to save their livelihoods as well as their homes, and thus "it was really inappropriate for us to come in and take over."
Frequently it is organizations such as this, geared specifically toward serving persons with disabilities, that are stepping in to fill the gap between what many disabled people expect and what disaster-relief agencies actually provide.
In Florida, since Hurricane Andrew, a broad-based effort has been undertaken to coordinate the preparedness and relief efforts of organizations at both the state and the local level. These organizations are in the best position to know what disabled people need.
Also, since private agencies are not eligible for reimbursement of disaster-relief services unless they are part of a federal, state, or local disaster plan, it is easier for such groups to provide services if they pool their resources.
"There are no specific federal or state guidelines to assure crisis intervention response to people with disabilities or special needs," according to Jonathan Reidy, coordinator of the Office of Disaster Recovery for the Area Agency on Aging for Dade and Monroe Counties (more commonly known as the Alliance for Aging), one of the principal groups involved in this effort. The lesson learned after the hurricane is "we need to take care of our own," Reidy says.
Although this effort is still in the long-range planning stages, other organizations in Florida have already begun putting services in place for the next emergency. One major problem before a hurricane, for example, is faced by persons with hearing impairments, who cannot keep up with storm warnings on radio and television - in response, TV stations now close-caption their hurricane coverage, and several deaf organizations have set up TDD/TTY hotlines to keep hearing-impaired persons up-to-date on storm warnings and evacuation orders.
Obviously, when disaster strikes, things don't function as well as they usually do - otherwise we'd call them something else besides disasters (inconveniences, maybe). People behave out of character, actions don't achieve their expected results, and things go wrong no matter how much hashing-out of procedures has taken place beforehand. It's easy to play Monday-morning quarterback and criticize an agency's performance once life has begun returning to normal - the very nature of emergencies, though, makes the reality more complex.
This is not to say, of course, that disabled people should expect nothing, or that relief organizations are justified in treating them with insensitivity or disrespect. But the key to surviving any disaster is preparedness, and the ultimate responsibility for preparedness lies with the individual - whether he or she lives in Earthquake Country, Tornado Alley, or anywhere else disaster could strike, and whether he or she has a disability or not. If anything, this issue highlights the need for disabled people to develop their own support networks and to provide for their own well-being, not just in case of emergency, but for day-to-day life as well.
You may be proud of your independence, and you may chafe at the notion of registering with some government agency so that it can come and rescue you if necessary, but if you were living in Northridge last January 17th, you may have regretted not having done so.
The best way to ensure your own survival during and after a disaster is to be prepared for them beforehand. This is true whether you're disabled or not, although having a disability certainly is a factor you must consider when devising your own disaster plan.
For everyone, however, regardless of ability, disaster preparedness comes down to having the right information - to knowing yourself, knowing your environment, and knowing the nature of disasters that are likely to occur in your area.
The following list of resources is hardly exhaustive, but it should help you to decide what steps you should take before disaster strikes.
The phone book. The front section of your telephone directory should contain local numbers for fire and police departments as well as emergency-relief agencies such as the Red Cross and Federal Emergency Management Agency (FEMA); it also should have basic advice on preparing for disasters common in your area, as well as for emergencies in the home (accidents, poisoning, etc.).
Fire/police departments. Many communities require persons with disabilities to register with fire or police departments. Even if not required, it is still a good idea to make these agencies aware of your own situation in the event of a disaster; they are also a valuable source of preparedness information.
Local Red Cross chapters. The Red Cross places great emphasis on personal preparedness; toward this end, many local chapters offer written and audiovisual materials as well as classes in disaster survival, first aid, and cardiopulmonary resuscitation (CPR). In addition, the Los Angeles chapter (2700 Wilshire Blvd., Los Angeles, CA 90057) has published two booklets, "Disaster Preparedness for Disabled & Elderly People" and "Assisting Disabled & Elderly People in Disasters" available for $4 each.
Federal Emergency Management Agency. The agency publishes a number of pamphlets on disaster preparedness, available free of charge. [See FEMA website.] Local FEMA representatives may also provide assistance in devising a personal emergency and/or evacuation plan.
The public library. In addition to many of the materials mentioned above, the library contains many books geared toward specific disasters or disabilities. The agencies referred to earlier also maintain extensive bibliographies of disaster-related publications.
Steven Hazzard's Aftershock
For Steven Hazzard, the real disaster began after the shaking stopped last January in California.
As soon as phone service was restored on the day of the earthquake, Hazzard - whose apartment building suffered severe damage - called the local chapter of the American Red Cross to inquire about emergency shelters. A shelter was finally opened in the area, but it was in Santa Monica, a considerable distance from where he lived. Moreover, Hazzard was told that the shelter probably would not permit him to bring his seeing-eye dog, Starsky - no animals were allowed.
Hazzard pointed out that, as a guide dog, Starsky is generally permitted to go wherever the public goes. "They said, `Well, can't you put him in a kennel?'" he says, laughing. "I said, `No, I'm not going to put him in a kennel - one, I can't afford it, and two, he's a guide dog, he's not a pet.'" It was as if the shelter had demanded that he check his eyes at the door.
When he couldn't get a definite answer regarding the dog - and since there were no buses running to get him to the shelter in any event - he and his roommate, Kathi Martin, decided to camp out at a church or in a public park. They ended up instead staying at the home of a neighbor.
For days Hazzard spent most of his time on the phone with various relief organizations. "It was a fiasco. I called so many different agencies, and I got the biggest runaround I've ever gotten in my life."
Hazzard and Martin (who has a mobility impairment), are still bitter over what they see as the ignorance and lack of compassion displayed by organizations supposedly set up to help people in times of crisis. In Martin's opinion, "Any person, whether they're disabled or not and no matter the degree or severity of their disabilities, should be given treatment equal to that given able-bodied people, and we were not given that."
Today Douglas Lathrop is managing editor of New Mobility magazine.
Overview of independent living for people with disabilities