Sunday, September 11, 2011

The Gathering Place - remembering those with disabilites on 9/11

It's just outside my door. The gathering place. The place where those of us with disabilities are to go in a crisis. Should there be a fire, an earthquake, a disaster of any kind, it is where we who move differently, who move mechanically, who move assisted, are to wait. I have been aware of this place, and places like it, for my entire existence as a person with a disability. On moving in to my apartment, a high rise, I'm told about it as I sign the lease. I'm smiled at. People are pleased that there is a plan. People want me to be grateful for the plan. Grateful that I have been thought about. But I haven't

9/11 taught me that.

We learn lessons from living. If we pay attention to the world around us, to the experience of others, our consciousness shifts. 9/11 shifted the consciousness of millions. People all the world over began to ask new questions about old problems. Personal safety, once assumed, was now a major concern. I was on a flight out of Toronto on the first day the skies were opened to air travel after 9/11 had closed them. I always sit at the back of the plane - airplanes don't back into mountains I figure - and I listened as the flight attendants readied the galley for flight, as they spoke nervously about being back in the air. I sat worried while they, just before they were asked to take their seats for the takeoff, held on to each other and prayed.

I saw discussions of preparedness on television. Questions about emergency planning were asked. Seldom did I hear mention of those in the twin towers with disabilities. Those that went to the 'gathering place' to await rescue and, to a one died. There was, of course, the heroic story of the guy with the guide dog that was guided to safety by the dog's training and instinct. To many he came to represent those with disabilities. He became the guy who escaped. Few spoke about those, waiting, gathered in the right spot following the wrong plan. Few mentioned the trust that had been given over by those with disabilities to those who planned for their well being.

I learned from this.

I really learned.

There are things you don't give to others. There are things that only you know about yourself and your abilities. I do not wish to simply wait while the world crashes around my shoulders, while flames leap up the sides of my wheelchair, while others who would come don't - or worse, die attempting to save me. When renting we rented an apartment that was exactly as high as I can make it down stairs. As long as someone is beside me. As long as someone holds my arm. I can make it to the ground. I have a light folding chair, one that can be easily carried. It can go with me too. At work, I know which stairwell I can negotiate most quickly. And, yes, I have practiced, I can get down them myself. My chair can come with me, I only use the light one at work.

9/11 taught me something. It taught me that my world can change in an instant. That I need to take responsibility for myself. It taught me that 'plans' for me or 'plans' about me are no where near as good as plans I make for myself. It also taught me that the deaths of those with disabilities aren't taken quite as seriously as those without. No other minority group was exterminated in those attacks to the percentage that those with disabilities were. None. Yet, somehow, they aren't talked about. Their stories will not be told ... their lives not really remembered. Except by those who loved them. And those, like me, who feel a kinship with them. Those like me who vow to them to have learned by the lives they lived - lives of contribution, lives of employment, lives of purpose and by how they died - trusting in a plan that could never work.

It's ten years after 9/11 and I still, in memory of those who gathered only to die, check out exits in every building I enter, in every place that I go. I want, like they did, to live. I want like they did, to trust. But I can't. I won't. Never again, I have learned, begins with me.


Anonymous said...

The only thing I can contribute to this post is a big and loud YES!


Beth said...

I think it was this past spring that FEMA starting talking about making plans "for the most vulnerable", I think the PSA said. As far as I understand, before that, the plans for people with disabilities in case of natural disaster was this: leave them. Disgusting.

My boyfriend is blind (but not sightless). Once, aboard a plane, a flight attendant was giving him instructions on what to do in case of a crash or other evacuation. He was told to remain seated until a flight attendant got him. She kept pestering him until he agreed to it, though there's no way he would have stayed in place in case of emergency.

Astute move, I think, as regards stairs. It's something I'm going to have to think about, I guess. My mobility trouble largely stems from balance problems and fatigue. Given enough adrenalin, I can get around at about a normal rate (if not a normal manner) even absent mobility equipment. I'm lucky there but I know that may not last. I want to be as close to ground floor as I reasonably can.

Our government (and I suppose most every one) wants the populace to be prepared for disasters, natural and otherwise. Everyone is supposed to take care of themselves (and possibly their dependents too young to make it out themselves but only without risking their own lives). Everyone except people with disabilities, who are supposed to wait and depend on others, instructed in this even if they could get out themselves. Um. What?!

Andrea S. said...

More buildings need to have evacuation chairs near the stairs on every floor ... for example, this

And there are more models out there asides from this one. Apparently a chair that suits the needs of one person with mobility impairments may not suit another quite as well, so anyone buying a chair like this for a specific person (rather than for public use in a public building) would want to do some research into the various options to determine what fits their individual situation best. But it can be a way for a person who normally needs a chair for ambulation to escape without needing to wait for rescue, although they do usually still need assistance from companions.

I can't remember now where I read this, but there was ONE wheelchair user who did escape the World Trade Center on September 11. He had an evacuation chair. Apparently he had been in the building the first time it was attacked by terrorists in (1993 I think?) and after that, he got an evacuation chair for himself that he kept at his desk all those years, in case something like it happened again...which as we all know did happen on Sept. 11, 2011, with more tragic results. Eight co-workers helped him get out on his evacuation chair, taking turns in teams of four to help carry him down dozens of flights of steps. I think they had had some rehearsals in advance and all agreed well in advance to be ready to assist in case of emergency, so this was not an impromptu thing. It happened because they were prepared.

I don't have time to google this story myself since I'm trying to get some work done at home this weekend! (I think it was in a report about disability and disaster preparedness, not a newspaper, but I could be wrong). but if someone else does perhaps they could post the link here. The same report had an estimate of how many other wheelchair riders died that day (I think more than 200 of the people left behind were in a wheelchair. This out of 3000 people, most of the rest of whom were trapped at some floor above where the plane crashed.)

I used to work at the World Bank in Washington, DC. They now have an evacuation chair stored next to every flight of stairs on every above-ground and below-ground floor in the building (the right kind of evac chair can be carried up stairs from a basement floor). This was thanks to the advocacy of a very outspoken wheelchair riding woman who was there a few years ago.

Dave, how about advocating for an evac chair to be made available at each floor at Vita? Even if you already have a plan that works for you, what about the next wheelchair rider who comes to your office?

Anonymous said...

Several years ago, I was working on the fifth floor when the power went out, one by one people went down the stairs.

I asked someone to help me. I knew could walk down the stairs if someone would carry my chair.

But they worried about liability if I fell (even though *anyone* could fall) and told me to wait, someone somewhere was going to do something. Eventually the last person left "to check on things" and didn't come back. And I was left alone with the emergency lights for over an hour.

There was no fire, no disaster, but if there was, I knew couldn't get out on my own. I could handle the stairs where there were handrails, but once at the bottom I'd be stuck without my chair, and I wasn't strong enough to carry it down the stairs myself. (Although if there was any sign of fire, I was going to shove the thing down the step ahead of me).

After two hours the power came on, and I finally got out.

Then it happened again a week later, and I threw a hissy fit until they called the fire department.

Who carried my chair for me while I walked out.

AND who chewed out the building management for not having a plan to get *everyone* out.

Nineteen years ago at a fire drill, when I was still walking although I needed a cane. I was the last one out of the building by over ten minutes. No one missed me. No one waited for me. No one looked for me. If it had been a real fire, I'd have died.

We really do need to be sure that emergency evacuation plans include us too. And to make a fuss when the emergency does happen, to make sure we get whatever help we need.

Sometimes it doesn't pay to be too polite.

Andrea S. said...


I have made two attempts earlier today to post a comment here, but neither of them have appeared. I'm thinking maybe they got caught by your spam filter (maybe because I did have one link in it). Do have a way to check? Or might there be another reason they went missing?


To, Anonymous: Your story is far too distressingly common. All of your stories. Yes, we need change in the way people plan for disability inclusion in disaster plans. Starting with the need to actually ATTEMPT to MAKE such a plan in the first place ....

Anonymous said...

This post might save lives. I've always taken for granted that I'll be saved by the good intentions of others. I realize that it is my responsibility to make sure that planning includes me and doesn't leave me waiting while the building falls around me. I've sent this to all my friends with disabilities and when I go to work tomorrow, I'm meeting with the health and safety team. We are going to have quite the discussion. I work on the 17th floor and use a power chair. I can already thing of some solutions. But the plan isn't a plan until it includes me. I've only just realized that and only because you wrote this blog post. Thanks for saving lives today.

Anonymous said...

My mobility problems are not that severe but after 3 months off work I was recently sent to Occupational Health who have recommended a buddy system to ensure I get out of the building in the event of an emergency. It made me think of your post.

ivanova said...

Andrea S., I also read about the one wheelchair user who escaped the twin towers. But what's sad is that in the article I read, it didn't mention his foresight and planning in getting the evac chair and rehearsing it with his co-workers. It just said that people carried him down many flights of stairs, the spin being that they were heroes and he was a burden.

Dave, Thanks for this post!

Anonymous said...

Here is a link to the story about the man who got out of the WTC in the evacuation chair. The Port Authority had bought the chair after the 1993 attack. I do think those that brought him down were heroes, but not that he was a burden.

Could any of you give me links to stories about those with disabilities who died? I googled a little, but couldn't find anything (but I'm no google expert). I never heard about it and and appreciate the education that Dave and others of you are providing.

It is helpful to me. I recently experienced a lack of preparedness at my son's residential school when they lost power during Hurricane Irene. Reading these stories gives weight to my concerns.

Anonymous said...

Thanks for this post. It makes a healthy person realise how selfish we are sometimes.