Annual EMSC Grantee Meeting

Family Representatives

Family Disaster Planning

June 20 – 22, 2006

CONNIE SUSA: Okay, your gas masks are useless at this point. Turn around. I need to know who is (inaudible) you are groups 1, 2, 3, and 4, which one is the biggest group.

JOHN SUSA: Okay. We are going to ask which group is going to report out, tell us who is in, who is out and why.

UNKNOWN SPEAKER: You need the United Nations to decide (inaudible)

(Laughter)

JOHN SUSA: Which is group 1.

CONNIE SUSA: This is group 1.

UNKNOWN SPEAKER: We're first? 67 (inaudible) because we felt that regardless of her (inaudible) she had knowledge (inaudible) of people, 17‑year‑old female high school drop out. She's in that long range reproducible cycle. (Inaudible) student with a gun yeah DA yeah DA. I'm not sure.

UNKNOWN SPEAKER: A little bit of everything.

(Laughter)

UNKNOWN SPEAKER: And the 30 '84 old police officer has a gun. I'm not sure except maybe he could (inaudible).

UNKNOWN SPEAKER: Did you purposely ‑‑ kill each other.

UNKNOWN SPEAKER: Did you purposely put the police officer because ‑‑

UNKNOWN SPEAKER: Just let these guys ‑‑

UNKNOWN SPEAKER: And then we decided on nine and ten because they're reproducible as well. So (inaudible) were reproducible in the world.

CONNIE SUSA: Group two.

UNKNOWN SPEAKER: I guess we're not choosing the priest. The 67‑year‑old female nurse, college professor. She can educate others. She can teach others. And also the female 17‑year‑old, female for reproduction, even though the IQ was low. Doesn't mean the next generation will be the same. There was a debate

about medical student, but some feel like he should be kept without the gun.

(Laughter)

UNKNOWN SPEAKER: (Inaudible).

UNKNOWN SPEAKER: We're keeping the 34‑year‑old police officer to keep the law and order person. The businessman and his son ‑‑ we're keeping the son, the 10‑year‑old. But that's ‑‑ they don't come together?

UNKNOWN SPEAKER: They have to go together.

UNKNOWN SPEAKER: To repopulate the world you can't choose, right?

UNKNOWN SPEAKER: That's right.

UNKNOWN SPEAKER: We're keeping the female Latino Hispanic (inaudible) number nine.

UNKNOWN SPEAKER: You've got one too many.

UNKNOWN SPEAKER: We're taking one, two, three.

UNKNOWN SPEAKER: We thought these were separated.

UNKNOWN SPEAKER: We'll get rid of the lawyer.

JOHN SUSA: Okay.

CONNIE SUSA: Group three.

UNKNOWN SPEAKER: We had some debate. I could have done it myself we would have done it in (inaudible) consensus group.

UNKNOWN SPEAKER: But you would have been wrong.

(Laughter)

UNKNOWN SPEAKER: Okay for various reasons the priest is out. Depending on which one of us you talk to which you talk to, 67‑year‑old nurse is either in or out, because I think ‑‑ the 17‑year‑old female high school dropout is in because she has no other apparent issues other than the low IQ. But she's of reproductive age. The medical student with the gun was out because of the gun. The cop. In my opinion the cop is out because of the gun unless we can have the bullets. In which case he can keep the gun.

We originally felt the ten‑year‑old kid could be separated from the HIV father. But that's not true. So the kid is out. Unfortunately (inaudible) of that decision. The prostitute and sexually transmitted is out because of her health. The male and female Latino are in because of the reproductive ability and the freeway‑year‑old lawyer is in as well for the same reason. We have another one?

UNKNOWN SPEAKER: He can stay.

UNKNOWN SPEAKER: I get to stay.

(Laughter)

UNKNOWN SPEAKER: Consensus was that the priest had a chance if he would leave his book at home.

(Laughter)
With the bullets.

JOHN SUSA: Group four.

UNKNOWN SPEAKER: We were trying to choose people who had a better possibility of repopulation. Females. We had the 67‑year‑old priest as well. 67‑year‑old nurse. We chose to keep the 17‑year‑old female high school student as well has the med student. Doesn't identify if it's male or female (inaudible).

UNKNOWN SPEAKER: So we could choose (inaudible).

UNKNOWN SPEAKER: As well as the 33‑year‑old female police officer who has a gun. We didn't realize we couldn't separate the boy and the father. So we would choose to not keep the ‑‑

UNKNOWN SPEAKER: We'll have the police officer shoot the father with the bullets.

(Laughter)

JOHN SUSA: This is being filmed.

UNKNOWN SPEAKER: Euthanize the ‑‑

UNKNOWN SPEAKER: We kept the Latino come and the (inaudible) lawyer (inaudible).

UNKNOWN SPEAKER: (Inaudible).

UNKNOWN SPEAKER: Yeah, we have two males. The male and female, the male Latino and the ten‑year‑old boy.

CONNIE SUSA: Okay. Now, I promise you that we'll connect the dots. We purposely left the gender out of several of these characters. And that 52‑year‑old priest may be unable increase may be female. But 52. The med student, you were the first group to point out that we had not identified the gender, and being socialized the way we were I heard people refer to him.

Also the police officer, no gender.

UNKNOWN SPEAKER: (Inaudible).

(Laughter)

CONNIE SUSA: Do you want to tell them where you got this?

JOHN SUSA: This is a thing that's used in a lot of different places. I use it in activities around discrimination issues. If you look at the descriptions of these people, often when people first look at them they have preconceived notions of who people are, police officer, male, doctor, you know, male, a priest, a male. The Latino couple. They could be brother and sister not necessarily boyfriend/girlfriend. Almost in every one of those instances there are alternative descriptions of these people that you don't know from your limited information.

And the point of the exercise in the discrimination arena is to point out to people it's very difficult to make decisions about people with very limited information quickly.

CONNIE SUSA: Now, to connect the dots: At the conference, the consensus conference, in one of the plenary sessions we were told about a drill, a emergency drill that took place here in Washington based on the scenario was an explosion in which there was chemical contamination, and it was a drill in which people with disabilities, with real disabilities, were included in the population. And when the triage was done, everyone with a disability received a black tag.

And they proceeded to line everyone else up for decontamination. What was interesting was that the people in line waiting to go into the decon tent went back and got as many of the people with the disabilities as they could and moved them forward and brought them to the line.

In one of our sessions, where we were dealing with the policy recommendations that had been made three years before, I raised this issue again. And it stirred, as you can imagine, a significant amount of discussion.

I think what happened ‑‑ and I can't assume, because I just taught you all not to assume ‑‑ I think what happened is that people were worried about the additional time that it would take decontaminate equipment and had to go with the people with disabilities. They were concerned about quality of life. They were concerned about, perhaps, the same thing that you had to deal with in the attack, that they wanted to preserve those people who would contribute the most on the other side.

And so a significant discussion arose. And it was apparent that the discussion was justifying the decisions that had been made in that drill.

So I'm sitting there taking it all in as a parent, knowing that had it been my children, at least two of them would receive black tags.

Dealing with (inaudible) when someone at the other end of the table said: Connie, you're the only parent here, tell us how you would feel.

It was really hard. And what I'm doing here is giving you (inaudible) about this conference. It was so (inaudible) especially in the wake of Hurricane Rita and Karina, where we heard people with disabilities had gone to the typical shelter and get turned away in favor of a special needs shelter. When they got to the special needs shelter, it was full and they were turned away again.

It happened to the (inaudible) and I had my Louisiana person here so I know I'm ‑‑ okay. I said at this conference we are crafting what may be the ideal response ‑‑ it was a response session that I was in, for children and for all people with special needs.

And I hear this (inaudible) being assembled, and that's wonderful. I hear the ideas. I don't think by virtue of my children's disabilities or those children that I work with, those children and adults that John has served so well statewide, they deserve any special treatment. But I would want to think that they would be on an even playing field with (inaudible) I said it seems to me that the people who made those decisions did not have all the information they need.

How does somebody contribute back to society? What makes that person a person of worth? No one knows that my son with multiple disabilities, no one in that decision making body, the same group that you just were a few minutes ago, knows that he teaches other people with disabilities to use the (inaudible) system. No one knows that he has hired over 50 individuals with disabilities to monitor the bus drivers on their compliance to the Americans With Disabilities Act. So they see someone in a wheelchair, cognitive disability, two hearing aids and they assume this poor kid must have a miserable life. And we're going to spare him.

They said what if it wasn't my children? What if it was a person with severe disabilities, significant disabilities, would I feel the same way? Is that what I base worth on, giving back to the community?

I said I think about what happened (inaudible) and I think that, I don't want to be (inaudible) I know that the problems were multiple. They were complex. They were severe and this would not have just fixed everything rosy. But one of the problems was that the people in those shelters felt helpless. They felt hopeless. They had nothing to do for days and days on end. Months on end.

And if those bystanders, had been asked to feed a person who could not feed himself or herself, if they had been asked to help move that person once an hour so that there were no skin (inaudible), don't you think they would have felt a purpose? Don't you think that person would have felt more hope?

I am reminded of John Milton's poem: On his blindness. The last line of that Sonnet is they also served to only stand and wait. When we establish criteria for selection, we need to establish those criteria on much broader way than I have seen them established today. That's one of our messages. The other message has been (inaudible) and that is ‑‑ we're Rhode Islanders, and ‑‑

(Laughter)

CONNIE SUSA: And I know you can't all see this, but this is our famous cliff walk in new port. And here is a tourist standing on the side of the cliff walk and he says: Oh come on Muriel, it isn't so hard. Now, this is a matter of convention. But it is also the bigger message of personal responsibility.

I think the overriding message I came out of that conference with, incidentally, was the first person to recognize that some people may not be males ‑‑ there you go. The bigger message is that we need to prepare. I was so thrilled to hear Dr. Kyle's presentation, because I thought our presentations really, in spite of our unorthodox approach, really do fit together hand in glove and as individuals and as families we need to build our 72 hour kits, get our supplies of medication, have‑‑ well you have ‑‑ you have the thing, let me let you do the conclusion.

JOHN SUSA: One of the really important messages from this conference was that we tried to show you is that if you're forced to react quickly, you know, you sometimes will make mistakes. Or you will soon discover that your resources aren't as good as they were, you though that they were, or all kinds of things. But if you have an opportunity to react more thoughtfully and a little bit slower, you can do a better job. And part of our message is that what was the message there was that if we can help the general population be more individually and personally prepared, and help the community become more and better prepared, more extensive sophisticated interventions that get brought into a disaster situation can be staged in a little more thoughtful way, it may be more effective.

Now, there's this necessity for everybody to be ready on an individual level, which is the Girl Scout motto. There's also a very important message that came from the conference, this idea that people in the disaster naturally went to help these, in this drill, went to help these people who were assumed to be expendable. A work group I was involved with was dealing with mass casualty emergencies in the mass transit world. And we did a scenario of being in the Metro when there's some kind of disaster, fire, explosions and the train is stuck in the tunnel.

If you've been on these trains and you read the directions, what do the directions tell you to do. Does anybody read those things, on your way here today or the last couple of days? The first.

UNKNOWN SPEAKER: Remain calm.

JOHN SUSA: First thing about personal preparedness is know where you are and your environment. They say to knock out the middle door. There's one door that's labeled the special emergency exit, and then it says go out and proceed along the tunnel that's lighted. They're going to light the side that's the safe place to go. And so the work group that I was in was what happens when you have a person in a wheelchair? Or who is blind or who is deaf who doesn't hear.

So what happens? So some people said, well, the (inaudible) the Metro will take care of that. They've got people on the trains.

UNKNOWN SPEAKER: Just standing by.

JOHN SUSA: Just standing by. Do you know how many Metro people, employees are on each of those trains?

UNKNOWN SPEAKER: One.

JOHN SUSA: One. Do you know what percentage of them have a disability themselves? About 90%. These are all the Metro workers that have bad backs.

(Laughter)

JOHN SUSA: The Metro go told us that. We try not to fire, get rid of our people when they're hurt. We shift them to easier jobs. So almost all of them have bad backs and the idea of them coming ‑‑

UNKNOWN SPEAKER: Notarized wheelchair on the train.

JOHN SUSA: It's not going to happen. There are several people in wheelchairs, many people who were not in wheelchairs and people who were indignant. What are we going to do? So give me about 30 second spot and I'll ‑‑

UNKNOWN SPEAKER: Well, I know that we talked about this in our employment situation. Because we had a staff member who was in a wheelchair, and our fire alarm instructions are to park in the stairwell and wait.

Well, my personal reaction to that is that that's not a satisfactory answer. And there were several of us who were more physically capable, and we determined that we would figure out some way to move that person physically. Now, there are extreme examples that would be much more difficult to cope with, a person that requires five or six people to be lifted, a person who is not in a wheelchair but who is in some other mobility device that's also extremely heavy. But you know for a larger portion, we decided that this kind of decision making is an unacceptable ‑‑ because the selection process is never going to work. We'll never make the right choices. So you have to make it a collective decision to deviate from that norm and behavior.

JOHN SUSA: And the group said we would hope that there are enough people on that train who have read the directions about what to do with it, with this emergency and who have a little bit more control over their whits than others, who would notice that there's somebody who will not be able to get out of there themselves.

UNKNOWN SPEAKER: And to expound on that. I've been ‑‑ I've been involved with disaster response in some of the worst places we dealt with in the last five years. I was in World Trade Center two weeks at the beginning. I was at the superior dome last year, until it was evacuated and other places. I can tell you that people universally (inaudible) that that's absolutely true. You don't have to worry about the person in the wheel ‑‑ I shouldn't say wheelchair, certainly not concern, but other people who rallied to take care of the people they need to help. They need help and look for opportunities.

JOHN SUSA: Right. And that's part of the message of this conference, was that we need to help people become first of all personally secure and prepared enough so they can go beyond kind of a self‑preservation mode of thinking and look at other people as the next step.

UNKNOWN SPEAKER: I agree with everything that you folks said (inaudible) add a couple more points. First of all I think Dr. (Inaudible) is speaking tomorrow (inaudible) couple weeks ago I was at a conference sponsored by the American medical association (inaudible) association and disaster (inaudible) and I had a chance to listen to presentations by (inaudible) there's a couple of things we don't have time now unfortunately to get into, but (inaudible) partly as a result of (inaudible) the issue of firearms and the ability to exercise (inaudible) there were a number of people who were taking (inaudible) and people with guns.

Because apparently the national rifle association has recently launched a campaign in Congress (inaudible) guns in a disaster so you all can go to the super dome and all these other places what it would be like if we did not have a (inaudible) I think that may be a natural discussion. And another one we're talking about deciding what to do with disabled people, there's a big debate about people's pets. There was a national campaign saying people are going to rescue their cats. I think there needs to be a discussion on that as well, because some of the rescue workers told me they were attacked by pit bulls. And the last thing they wanted to do was put a pit bull in a helicopter. So there's a lot of issues here that we need to have discussion about.

UNKNOWN SPEAKER: Need a gun to shoot the pit bull.

JOHN SUSA: You're absolutely right. That's one of the values of this.

UNKNOWN SPEAKER: (Inaudible).

(Laughter)

JOHN SUSA: I think this is the value of that conference, is it stipulated ‑‑ there were people there actually with service animals, service animals of all kinds.

UNKNOWN SPEAKER: A service animal is slightly different than someone who has a pit bull.

UNKNOWN SPEAKER: There's some service animals down there, what was it she had a service animal wasn't blind or ‑‑

UNKNOWN SPEAKER: Comfort animal.

UNKNOWN SPEAKER: Tactile thing.

JOHN SUSA: Gets complicated.

UNKNOWN SPEAKER: Some of the rescuers told me that they were in boats passing people in waist high water, getting passed by those people they bypassed to get to people in neck high water or on top of roofs or anything. So you get a lot of issues about what your priorities are.

JOHN SUSA: But our take home message it has to start with personal preparedness. Started out with that quiz that you can take and share with your friends. It's an example of ‑‑ we didn't have a chance to talk about, beyond the personal preparedness there's the community preparedness, a lot of community organizations like churches that also focus in on helping people be prepared and this particular quiz came from a Mormon church website, Mormon church is really big into individual preparedness and survival stuff and there's a reference to a (inaudible) I think the non‑English word here stands for family reviews, they have a weekly family group meeting. So take the quiz. See how you personally do, our your family does and the scoring is there, too. And thank you for coming.

(Applause).