"How are people with disabilities faring in this crisis?" the DPI bulletin asked. "While we have yet to find specific statistics about the effect of the tsunami disaster on the population of people with disabilities in the affected countries, a few stories are coming out in the news." In Galle, Sri Lanka, for example, 41 of 102 residents of the Sambodhi Home ("a shelter for the physically disabled and mentally ill") survived; director Kumar Deshapriya, who uses a wheelchair, plans to rebuild.

The Galle story seems to be one of the most widely circulated stories out there. As I looked for information, I came upon it again and again.

Reporting that "Not only are people with pre-existing disabilities affected by a lack of access to aid, but more people are becoming disabled because of the disaster," DPI is offering a way to donate money to enable DPI's Asia-Pacific Regional Office to help disabled people in the affected areas.

I was glad to get the bulletin. I had wondered, almost as soon as I heard of the disaster, how disabled people in particular had been and would be affected. It's not that I don't care what happens to nondisabled people. It's just that, in my experience, no matter what barriers nondisabled people have to deal with, at least some disabled people are going to have to deal with more.

Here in Chicago right now it's high-rise buildings. We've had two high-rise fires in recent memory. In the first one, the wrong evacuation instructions were given, people got locked in stairwells, and six people died. In the second one, the Fire Department, the emergency services workers -- and the people in charge of the building -- had clearly learned from the first one: the errors were not repeated, and nobody died.

But stairwells and cell phones -- on which trapped people called 911 to report their locations -- figured prominently in the stories of people getting out of that second fire, and I wonder whether I would have survived, had I been on the floor where the fire started. I can't manage stairs any more, and I can't use a standard phone. I could use Wyndtell's Wyndpower, a service that would allow me to have a live TTY discussion with 911, and after the fires and the continuing problems with public transit I am considering getting a pager or other compatible device and becoming a Wyndtell customer -- but given my attempts to phone other public services I wonder how good Chicago's 911 service really is for TTY users.

Then even if I did manage to tell 911 operators exactly where in a burning building I was, and even if the equipment necessary to evacuate me were available, I don't know whether I could understand firefighters' instructions or communicate anything whatsoever to them.

I might be okay. I might not. Dealing with almost anyone is a gamble for me these days, and I have no way of knowing what my odds would be in an emergency. And this is in a city where I've lived and worked for years. I have no way of knowing whether already-disabled and newly-disabled people in the tsunami-affected areas had and have significantly worse odds of survival than do nondisabled people, but my experience suggests that they may.

That said, it is clear that a great many people, disabled and non-, faced and continue to face heartbreaking odds. "This is an unprecedented, global catastrophe," United Nations Secretary General Kofi Annan told reporters four days after the disaster, "and it requires an unprecedented, global response. Over the past few days, it has registered deeply in the consciousness and conscience of the world, as we seek to grasp the speed, the force and magnitude with which it happened. But we must also remain committed for the longer term. We know that the impact will be felt for a long time to come."

Annan's assessment of the long-term commitment required is echoed by other people. " Sri Lanka needs long term help," said Ivan Corea, chair of both Autism Awareness Sri Lanka and Autism Awareness UK . "The southern and east coast of Sri Lanka were devastated by the tsunami -- giant tidal waves smashed into the island killing thousands of innocent people including people with disabilities. Over a million were made homeless."

Before the tsunami, Autism Awareness Sri Lanka believed that there were at least 30,000 autistic children on the island, and that that number may be low because official records aren't kept. Corea said he didn't know how many adults there might be. No one has any idea how many Sri Lankans -- autistic or neurotypical, disabled or nondisabled -- have died or will die in the near future.

But those Sri Lankans who survive the immediate aftermath will continue to need assistance to rebuild, and Autism Awareness Sri Lanka is asking that help be given to all Sri Lankans, just as some well-respected disability organizations in the US are calling for donations to be made to organizations that do not have any specific disability focus. "Children have suffered brain injuries," said Corea. "Others have become disabled. We are appealing to international disability organizations to work with the Rotary Club Colombo Regency to help these people. I would strongly advise disability charities to work with the Rotary Club Colombo Regency as they have the logistics and teams to go out to the east and the south to help the tsunami victims."

Autism Awareness UK has also called on Prime Minister Tony Blair to commit to long-term aid, saying that Sri Lanka will need assistance for at least 10 years. Autism-related groups in America, Corea said, are urging President George W. Bush to make the same commitment.

While it is easy to compare my situation only to the situations of those who have it better, it is also important for me to recognize that I am privileged compared to others -- who, no less than I, deserve to be treated as the equals of everyone in the world. I may have a lower chance of survival in a high-rise fire than many of my neighbors, but I'm still in very good shape compared to many other disabled people around the world.

Dave McQuirk is studying for a Diploma in Emergency Planning at Coventry University in the UK, which is a professional qualification for people who, like McQuirk, are responsible for emergency planning. "I got involved," McQuirk said, "as I'm one of the team responsible for business continuity and emergency planning at work.... We have a higher than usual number of employees with disabilities and that's how [and] why I've got interested in this as well as being interested as a disabled person myself.

"In the UK there is little to no information in this area. This is something that I'm working on correcting. In the US there is much more information. It's not perfect but it's a good start. The stuff I've found useful so far is from FEMA [the Federal Emergency Management Agency], the National Organization on Disability and the Red Cross."

And it's not just information, McQuirk said. "In the US, planning for people with disabilities is much more ingrained in the whole planning process then it is in the UK. For example, in August, the UK Government published a guide for preparing for emergencies that was sent to every household. I phoned up to request a large print version for my fiancée who is visually impaired. After three months I hadn't heard anything and ended up phoning the senior civil servant responsible for the project. Only then did one arrive! Unfortunately this experience is not unique. As part of my study, I'm planning to write UK-centric versions of the US guidance, which hopefully I can get some UK body to sponsor and publish."

It strikes me that McQuirk's experience is not only not unique, but it's one that'll be very familiar to many people in the US. (Recently it only took me only one email to the Department of Housing and Urban Development to get information on a HUD-funded conference on accessible housing in a format accessible to me -- print or via email or TTY/Relay instead of only by voice-to-voice phone service -- and while I was very pleased with HUD's immediate willingness to point out to the organizers that federal money comes with Section 504 obligations , I had hoped that an organization concerned with disability rights wouldn't need that reminder.)

Nonetheless, McQuirk's point is well-taken -- and that's just the UK, which is similar to the US in many ways -- and there are reasons for Americans to believe that progress is being made. NOD reports that on December 28, 2004, Judge John W. Debelius III of the Montgomery County (MD) Circuit Court ruled that the national evacuation policies of Marshalls stores are a public accommodation and that Title III of the Americans with Disabilities Act applies.

When the City Place Mall was evacuated on September 3, 2002, Marshalls employees forced wheelchair user Katie Savage into an area from which the only ways out were elevators that had been shut down for the emergency and stairs that she could not climb, and then they left her trapped there. She filed a lawsuit against Marshalls and City Place Mall, claiming that they violated the ADA. Debelius's ruling means that the case will go to trial.

"It is shocking that a major shopping mall and an important national retailer have not considered the needs of their patrons with disabilities when designing emergency evacuation procedures," said Linda Royster, Executive Director of the Disability Rights Council of Greater Washington. "Retailers must understand that providing safe emergency evacuation plans for people with disabilities is a basic requirement of the ADA."

While disabled people continue to struggle in some ways to be recognized as members of the communities in which they live, we are in other ways clearly members of both those communities and larger disability-related communities. Malaysian Anthony Thanasayan, who writes the Wheel Power column for Malaysia's national paper, The Star, reports that deaf Malaysians at YMCA Deaf Centre Pusat Majudiri had considered taking a diving trip to Phuket in December but decided not to -- and thus avoided the tsunami.

Thanasayan -- who does not, incidentally, use the capital-D "Deaf" at any point except to begin sentences and in proper names, which has left me unsure whether and when to refer to the people he is writing about as (audiologically) deaf and when to refer to them as (culturally) Deaf -- writes that "Many deaf Malaysians first heard about the raging seawaters incident when their deaf friends from overseas surprised them with emails enquiring about their safety."

YMCA Deaf Youth have responded to the urgent need for money to help people in the tsunami-affected regions by putting on a cultural night at the YMCA Kuala Lumpur, featuring Vibrant Hands, a deaf drama group, and students from the Clarke School in Chennai, India. They intend to raise money to donate to the YMCA Tsunami Relief Fund.

People working in disability rights are familiar with asking not only what has happened and what to do about it, but whether it should have happened at all. We ask, for example, not only what Marshalls ought to do in response to Katie Savage's lawsuit, but why the company came up with a national evacuation plan that involved trapping customers in basements in the first place. And it's natural for us to ask whether there was anything that could have been done that would have protected the worst-hit areas. It turns out that there was.

"I think," Secretary General Annan said of the devastation caused by the catastrophe, "we all agree that, if there had been an early-warning system, it could have mitigated against the disaster and they would have had some notice -- not much, because of the speed and the suddenness with which the disaster occurred. But they would have had some warning and perhaps saved some people."

Early-warning systems are more effective in places like Hawaii, which have more time than Indonesia and Sri Lanka did after an earthquake to prepare for the waves that might be coming. Moreover, tsunamis aren't very common in the Indian Ocean, and decisions have had to be made about how to spend limited resources. But stories like the one about 10-year-old Tilly Smith, who recognized warning signs that had been described to her in school and is credited with saving about 100 lives in Phuket, make it clear that even a few minutes' warning can make a difference. There are things communities and individuals can do to increase the odds of surviving.

There are also, Annan suggested, things that don't have to happen in the future, but which our actions (or inaction) now might encourage: the aftermath of the tsunami provides "an opportunity for the developed world to work together with the developing countries, and not only to work together with them, but to work together in the long run in their own interests to ensure that we don't have situations which fester and create desperate people who could be capable of doing all sorts of things. And so I think, by working together with the developing countries and ensuring that people who have lost everything are able to rebuild their lives, it would be in the interests of all."

But as long as we're talking about rebuilding lives, what about the possibility that the lives of disabled people will be seen as less rebuildable, or less worth rebuilding? A sudden transition from a nondisabled to a disabled life can be shattering; a sudden transition from nondisabled to disabled in the midst of the tsunami's destruction is likely to make rebuilding one's life especially difficult. Especially if the people who are assisting the nondisabled people in the area don't know how or don't know why the life of a disabled person can be rebuilt.

The Blind People's Association in Ahmedabad, India, and its sister organization, the Saddbhawana Rural Development Trust for Relief and Rehabilitation (SRD) address exactly that problem in their appeal for help.

The word "Blind" in the BPA's name "is a misnomer," the group reports on its website -- though one (like the Arc's, I guess) that is "too well-known to be changed." It is a legacy of the founding members, blind people who came together in 1954 to start a recreation club. It is now a cross-disability organization working on prevention, education, counseling, rehabilitation, employment and advocacy. The "Mission" page on the site describes an organization that sounds very much like a group that would fit in with self-help and advocacy disability groups here in the US.

The BPA and the SRD "estimate that though thousands have died, there are probably thousands who are injured due to the impact," they wrote in their appeal. It is those people whom they have pledged to help. "We would be providing our assistance in the form of assistive devices like crutches, wheelchairs, collars, spinal corsets etc." They also hope to give money to individuals in groups whom they have determined to need it.

Groups like the Blind People's Association, which offer the message to newly-impaired people that they do not have to be helpless or useless or lifeless, will certainly be vitally important during the period in which lives and communities are being rebuilt. Disabled people who are socialized into helplessness, uselessness, and lifelessness have much less to offer their communities than people with exactly the same impairments who are supported in finding out what they have to contribute and then contributing it.

One important thing that becomes clear, as one sets out to find out how disabled people are doing in the aftermath of the catastrophe, is that while many already-disabled and newly-disabled people can be described as victims, many other disabled people, some (like Kumar Deshapriya of the Sambodhi Home in Galle) right there in the middle of it and others (like the students from the Clarke School in Chennai) farther away, are part of the global effort to help disabled and nondisabled people rebuild their lives.

This is the context within which DPI's January 11 bulletin arrived: many disabled people were still trying to figure out what to do in response to the death and destruction of December 26, while others were already helping and directing still other people to opportunities to help as well. So to Disabled People's International, Autism Sri Lanka, YMCA Deaf Youth, the Blind People's Association, and all the other individuals and groups whose leadership helps the rest of us figure out what to do: thank you very much.

Posted Jan. 17, 2005.

Cal Montgomery writes frequently for Ragged Edge. Read her article A Hard Look at Invisible Disability.