Advocacy 101 Presenters: Bob Michaels, Lee Bezanson, and Leau Phillips. >> SHARON: Good afternoon, everyone. Welcome to today's webcast, Advocacy 101, presented by Lee Bezanson, Bob Michaels and Leau Phillips. This webcast is being sponsored by the Cash and Counseling national program office. My name is Sharon Finney and I'll be assisting with today's call. Before we get started, I wanted to cover a couple of housekeeping issues. For those of you on the webcast today, to submit your questions click on the E-mail button on the bottom right-hand corner of your screen or you can E-mail them directly to webcast@ilru.org. And for those of you participating today via teleconference, our presenters will prompt you when they're ready to take questions. And at that time, the phones will be taken off mute. You will be allowed to ask your questions at that time. Please try not to talk over one another. Allow for one question at a time. And if you do have mute on your phone and you are not asking questions, please just put your phone on mute to avoid the outside noise. Also we ask that you respect the differing opinions of our audience and that we allow everyone the opportunity to share their views on the subject matter today. If you should have any technical difficulties, please feel free to call us at (713)520-0232. Again, thank you for joining us. Now I'm pleased to introduce Lee Bezanson, associate research professor for Boston College. Good afternoon, Lee. >> LEE: (No audio). >> SHARON: Hello, Bob? >> BOB: Yeah. >> SHARON: Would you like to start the call? >> BOB: So Lee is not on? >> SHARON: I guess we lost Lee. >> BOB: Okay. Well, then I'll just jump right into it. If she joins us later then she can do the introductions and discussion. Okay, I'll go ahead and start. My name is Bob Michaels, and I'm going to be one of the two trainers today. The other one with me is Leau Phillips. I thought we'd look today at the table of contents in the manual so you get a real good understanding about what it is that we're going to true to do today. Most of you what you see is covered in the -- that we're going to be covering today will be in just the first five pages of the manual, the advocacy definitions, the words about stereotype and communicating with public officials. The rest of the manual we put together to help those of you who wanted to do a little bit of work outside of this session. The information on like keys to a successful meeting and becoming a ten-minute advocate, ten rules on (inaudible) are all kind of different ways of looking at the same information we're going to be provided today. The thing on (inaudible) systems and the political contact report form are tools that were developed if you want to try to set up a system or develop an advocacy network within your community. We have also in there some information that was originally developed out of Kansas University the guide for giving personal testimony, for berating public officials and the guide for writing letters to the editor. These are all things that you may find to be helpful in the work that you might do in the future. We also have in there -- and I think we probably should have recognized two items that were developed in Utah, the ten rules -- no, I'm sorry, the learn how to be a ten-minute advocate and the legislative coalition for people with disabilities are some things that were particularly developed in Utah, but we felt that they were so good that they deserved some attention that you'd want to have those resources in this manual. The advocates in Utah went ahead and developed these and then they created a legislative coalition and what you have in the last starting page 24 is a series of bylaws related to a legislative coalition that if you ever want to start one in your own state or your community, this is a real good model for you to use. So that's information on the table of contents. I thought we ought to go through that first. Has Lee joined us yet? I'll go ahead with the section on advocacy definitions. There are really three types of advocacy that we need to be talking about here. The first one is self-advocacy and if you change the first slide, self-advocacy is an action taken on one's own behalf to protect or improve the individual's life circumstances. We've included a couple of examples in the manual and this is on the very first page which is actually page 3 of the manual. An example of that would be -- of self-advocacy would be John Smith moves to a small rural community and he discovered that there is no ramp going into the post office. He calls the regional ADA office and discovered that there is a decade long requirement that all federal buildings be accessible. He secures a copy of the law and regulations and takes it to the post master who orders the required modifications. We have one guy who sees a problem that affects him and he goes out and takes action. Now, the rule of an advocacy add organization here would be to help develop the materials, to offer training in self-advocacy so that he can do these things for himself. Coach him along so he can again act on his own behalf. But the advocacy organization would really be staying out of it and he would be doing this on his own behalf. That's self-advocacy. The second type of advocacy is individual advocacy. And individual advocacy is defined as assistance given to a single person which is intended to improve that person's life circumstances and the person's self-advocacy skills. Using our same example, it would go like this: John Smith moves to a small rural community. Discovered that there is no ramp going into the post office. He asks (inaudible) to send out the post master who tells him that adding a ramp for one person is too expensive and he advises John to do what you did today and have someone come and get me and I'll come out there. John calls the local Center for Independent Living which agrees to send a peer counselor with him back to the post office. So armed with the law and the regulations and a second person in a wheelchair, they meet with the post master who agrees to add the ramp. So here we have now somebody who sees a problem and the organization or another person comes in and gives him assistance. So this is self-advocacy. The rule of the organization here is to assist a consumer so they can do it for themselves. They develop the materials that everybody needs and they offer training (inaudible). But also techniques for asserting themselves and getting what they need done. So that's individual advocacy. So we have self-advocacy and individual advocacy and then on Page 2 of the manual, you have systems advocacy. And systems advocacy is defined as an activity which has the effect of altering laws, regulations and practices that impact large numbers of people. Now we're going beyond just an individual. An example would run like this: So John Smith calls the local center about the inaccessibility of the post office. He discovered that he's one of a long line of people with disabilities who have been put off by the post master. The center files a complaint with the Access Board because this is a violation under the Architectural Barriers Act. So what we have here is somebody sees a problem and they realize that this is a problem that affects a lot of people. So the organization there will take action to provide leadership within the community, but then also to develop leaders and to make John into a leader in systems advocacy as well and to educate the disability community about the issues and about their rights out there. Now, you may be wondering why I'm talking about these three different types of advocacy, and wondering is this really important? But to me this real basic information is important because a person just doesn't become a self-add oh vat -- I'm sorry, a systems advocate. You have to go through these other stages. I'm sorry I forgot to tell you to move the slide. There is a second and a third slide for systems advocacy and what people tend to do is they become individual advocates or become self-advocates and then individual advocates before they become systems advocates. And if you're out trying to do systems advocacy and you wonder why people aren't participating, perhaps the people you're talking to are people that don't have the individual or self-advocacy skills and these are things that we need to develop. As we go on in this session, we'll talk more and more about why people don't speak up for themselves and how people can better learn to do that. That's the end of the first part. Are there any questions? >> SHARON: I don't have any questions that have come in via E-mail. Hold on just one moment. Do we have any questions from our teleconference audience? >> LEE: No, but Sharon, this is Lee and I'll jump in. I don't know why, but I got muted out and I gave my whole speech from my office. So I apologize. >> BOB: I think it got censored. >> LEE: It was warm and fuzzy. >> BOB: One of the questions I often get -- what whee did, Lee, I went ahead and did the part on advocacy and you can go back and do the introduction here in a second, okay? >> LEE: Sure. >> BOB: One of the questions I often get whenever I'm giving -- you know, I'm talking about advocacy organizations that help people who are trying to self-advocate and people say well what advocacy organizations are out there? The ones that I'm referring to in this session and also the ones that I think tend to be among the most helpful are centers for independent living. I assume that most of you know about centers, but if you don't, there are probably about 550 of them nationwide. They are all consumer controlled, meaning people with disabilities own, run them and operate them and they are on the boards of directors and staff and they tend to be cross-disability, so they are people with a broad range of disabilities, but they are in many communities and there is a directory of them on the ILRU website at ilru.org and that's a really good resource for people who find themselves stuck. Another one is the DBTACs, the built business technical assistance centers that are located in every region around the country that specifically address ADA needs. They provide information, materials and technical assistance and training and they are all -- they are out there as well. There is a common number -- phone number that you can use if anybody ever wants to call the DBTAC and let me give that to you. It's 800-949-4232. 800-949-4232. So those are two real good resources I think when you're talking about that help people. Lee, let me turn this back to you. >> LEE: Okay, thanks, Bob. Well, I'm sorry everyone. Basically, I had wanted to welcome you on behalf of the national program office to our advocacy 101 webcast today. And to say how pleased we are to have both Bob Michaels and Leau Phillips as our presenters. I've been in this business a long time and I've heard them both on several occasions and I've as managed to come away with some new fascinating nugget of interest and use to me. So I know you are already finding the presentations today useful and I turn it back over to Bob. Thank you. >> BOB: Okay, any other questions or anything? If not, what I wanted to go into next was discussion on disability stereotypes. Now, if we were in a classroom here, what I generally do is have somebody come up to the front and we begin writing on a black board and we'd ask everybody to say what different stereotypes have you heard about people with disabilities out in the community? We can move to the next slide. And have people begin to write those down and people get into it and after awhile they'll be throwing all kinds of them out there. What I've done today is I've written a bunch of those from past experience up on the slide here. And you'll see them. They are things that people say about people with disabilities -- that they have limited interest elect, when you're at a restaurant, they talk past you to the other person sitting there. They are a burden on society, or we're asexual or victims or drags on society or undependable or out casts or menaces to society. A big one here is unemployable, the option that people with disabilities can't work like everybody else, that we're incompetent and subhuman, that people with disabilities are sick or medically fragile, diseased, that you have to stay away from people with disabilities, that they are deviant or buy logically inferior or deficient or child-like, dependent or not capable. There is all kinds of different words that we have and different stereotypes that we have of people with disabilities. And these stereotypes -- not everybody has every one of them, but lots of people have at least one of those. And you know -- we all know that anybody with disabilities knows this is what we're dealing with all the time. That people have these attitudes and these ideas about people with disabilities. But the idea is not just the attitudes that people have, but we have to do what we can to try to change those, but if you look at the next slide, the danger here is that society believes in these stereotypes. If they believe that people avenue limited knowledge, if they believe that people with disabilities are the dregs of society, if they believe people with disabilities are unemployable or medically fragile, then who do they elect to represent them? Well, let me think about what's going on right now. We have people beginning to line up for president because they want to be president. Well, whether you listen to Fred Thompson or Hillary Clinton or Barak Obama, we listen to what they are saying and we will vote for the person who thinks the most like us and that's what happens here. Is that we tend to vote for people who have -- who think like us, and if society believes that people with disabilities are diseased and out casts and bio logically inferior, they will vote for people who think like that. But the bigger problem with all that then is the next slide. If our representatives believe in these stereotypes that people are angry and unemployable and undependable and have limited intellect, (inaudible). If they believe people with disabilities have limited intellect. What are they going to do when they do an education act and they talk about people with disabilities? If they believe people with disabilities are uncontrollable, (inaudible) school systems in the IDEA, what does its say about employment and how much money do they put into getting people back to work, people with disabilities. If they believe that people with disabilities are sick and deviant, what does that say about the kinds of assistance that they allow. Do they provide for assistance so you can live in the community or do they try to put people with disabilities in institutions? We all know the answers to that. And that's why 65 percent of the people with disabilities are unemployed. 60 percent of the HOME and community-based services money is in nursing homes. I was doing a little research for this and I started looking up about prisons and I just was finding different things and it was really interesting, I have this one paragraph I want to read to you. Why are so many prisoners in the United States disabled? Genetic determinants to a tribute the high prevalence among prisoners to inherited deficiencies. For instance, we perhaps most realistically see a person's handy cape has -- (inaudible) the breeding of criminal violence. You'd say that's probably a turn of the century -- back in 1910 when they were building all these institutions and stuff. No, that was 1996. people have these stereotypes and have these ideas about people with disabilities and it shows up in our institutions and the way people with disabilities are treated in this country. There is another paragraph I found that said most stunning of all is a four state study which examined juveniles imprisoned for capital offenses. So this is juveniles and minors who have murdered people. Virtually 100 percent of those studied had multiple disabilities. They think that 30 percent of the people in prisons have hearing impairments, that as high as 10 percent of the people may have developmental disabilities. So what does this say about our society and what does this say about what motivates politicians? Next slide. If they have these ideas, we've got to do whatever we can to try to change those ideas and change the stereotypes that people have of people with disabilities, but we need to be thinking when you're going in there -- and this is where Leau is going to be taking us now. We talk about meeting with officials, we have to really know and understand the people and what motivates them. What kinds of attitudes do they have? What's happening with the economy? What is our society saying? What about the politics of your community? And what about the environment that you're living in? Are we in the middle of a recession? What about training or legal -- or legal things or enforcement of our laws? What about the constituency, other people in the community, what do they believe? It's really important when we're faced with these kinds of stereotypes and these kinds of biases and prejudices that people have, do your homework that you really understand what motivates people. Okay, any questions and answers here? >> CALLER: This is Marilyn from West Virginia. You're not saying these places -- there are no people in these places that don't have these deficiencies, are you? Other words, what I'm saying there are people in jail and young people that do have these deficiencies. >> BOB: Oh, sure. Sure. >> CALLER: It's just something -- >> BOB: What I'm saying is that the assumption then is that people with disabilities also have these deficiencies and therefore (inaudible). >> CALLER: Okay. >> CALLER: This is from Kentucky. One thing is I think they base -- that I did not see in here, maybe it's somewhere in your -- maybe I'm missing it in one of the words you're using. They also look at individual's disabilities that you know how society uses the class, if this person has money, high income people, they call them medium income people and so low income people -- you know how society looks at how much money we have. And because the people with disabilities have that little check that's coming in, that gives them a stereotype towards them as well. Do you agree with that? >> BOB: Yeah, I agree with that. We're going to talk about oppression here and that's a really good example of oppression where people look at the income that people have and make a determination about those people without ever knowing them. >> CALLER: and then sometimes -- sometimes people think people with high money have more credibility than others do and they tend to maybe meet with them more than they would than somebody that had a disability. >> BOB: Isn't that truth. Any other questions? >> SHARON: I don't have any E-mail questions. >> BOB: One of the things that people often ask me at this point is we're talking about stereotypes and how do we go about breaking those stereotypes? Well, one of the things you can do is you never let anybody get away with perpetuating a stereotype. You know, and you can do that in a couple of ways. You can become a model, speaking up when somebody talks past you and pointing out misconceptions that not all people with disabilities are unemployment. Not all people -- you know, if 65 percent are unemployed, 35 percent are employed. And keep up the education, and people are living independently -- we really need to try to do whatever we can to counter those stereotypes and the best way to do that is by becoming a real good model. >> CALLER: I have a question. A lot of the people that are taking these calls and on the web, are they already advocates? Have they been advocates before? Is this for mostly people who have not been? >> BOB:Well, we're assuming that most of the people on this call have limited experience as advocates. >> CALLER: Okay. >> BOB: So we're talking about some real basic kind of things. I hope that the tools that we've given you in the manual will help those people that have a little bit more understanding be able to kick start what they are doing. >> CALLER: Yeah, they were good tools. >> BOB: Any other questions? >> CALLER: No, I was just curious about that. >> BOB: Well I'll turn it over to Leau. >> LEAU: Good day to you. This is a great background for what we're going to be talking about on the rest of the call. You have to really sort out all of the information that people are dealing with on a daily basis when they are looking at advocates and figuring out -- you know, we all come with different filters and so one of the ways that we can change the perspective just as Bob said is if we start communicating with public officials as self-advocates, as individual advocates and then moving on to really impacting the system. So communicating with public officials is a really important part of that. In the manual that Bob put together, on Page 7, there is an excellent, excellent outline of how you want to think about communicating with your public officials, whether you're doing it individually or with a group or as an organization, and how each one of those steps will then begin to change the perspective. Sometimes it feels like we're chipping away a little pebble at a time, but those little pebbles can move mountains of stereotypical behavior. So let's think about this. So we have the opportunity to meet with a public official, to talk about something that's vitally important to us, that's affects our lives on a daily basis, like not having access to the post office. I mean, if you can't get your mail or send mail, it's a major communication issue, even in these days of electronic and text messaging and E-mailing and all that stuff, mail is still the main way that people get in touch with us about jobs, financial information, all kinds of things. So when we're trying to look at something that affects us on a daily basis, we have to really have a thoughtful game plan about how to do this. So once you have made contact with a public official, once you've figured out what it is -- and we'll go through some of these other things, but let's talk about the basis for doing this. When you set an appointment, you want to be sure you're on time. You don't want to contribute to the stereotype that people with disabilities are undependable. You want to be there on time. You want to be there looking your best. You want to be there well prepared. You want to understand what it is you're going in to talk to them about. Now, everybody is going to have a different kick on it and that's the beauty of having people go with you or doing it as an organization, but even your story is fabulous and will be our own individual stories will make a big difference. When you meet with a public official, you want to think about what you have in common. And you know it was things like, oh, yeah, your mother has her nails done at the same place that my aunt gets her haircut. That's a great personal connection. You don't want to make anything up, but you want to look for connections. Even if you can't find a single thing in common, we're all people. That's the best connection of all. So you want to think about what is a common ground that you can approach this elected official, this policymaker, whoever it is that you're going to talk to, what common ground do you have? And be sure that they understand. Be sure they understand that you live in the same community. You've heard them speak. Your kids went to the same schools together. Your cousins played on the same soccer team together. You also want them to understand you're the expert. We know what it's like to live with these stereos types every day. We know what it is that they're asking them to do and we need to be able to tell that to them. We want to really understand -- and I think we should go to the next slide, Bob Rob, sorry. >> SHARON: Leau? Did we lose Leau? >> LEE: I'm not hearing her. >> SHARON: Bob? Would you like to pick up the slack? I'm sorry. >> BOB: Sure. I think where she was going was the next slide was on preparing the presentation. And it's really important when you do this that you know and understand who it is that's going to be the spokesperson. And this is something we always recommend people do is just take some new persons along with you who have never done this before as well as some veterans and what you do is you decide who is going to be the spokesperson. You don't want -- when you go in, you need to have two or three main points you're going to try to make and then you really need to plan this out, who is going to take the lead, who is going to make what points, how long is each person going to be speaking? If you have -- usually when you set an appointment with somebody, what they are going to say is I'll be able to give you 15 minutes or half an hour or it's wide open or whatever, and you need to be prepared to work within the time limits that they set for you. So if you have 15 minutes and you have three people, you need to decide how long each person is going to talk and what it is that they are going to be saying. You really need to prepare. >> LEAU: Thanks, Bob. We just had major lightning thing and my phone went dead and I switched room. >> BOB: I just did prepare your presentation. >> LEAU: and like Bob said, you really have to think about this in advance. Rob, that kind of threw me off, the lightning strike. Do you want to go to establish common grounds. But really think about -- even if when you're establishing the common grounds, when you've prepared your presentation, when you've decided who is going to speak on what, it's okay to take notes. It's okay to write it down. It's okay to have a game plan. Not everyone can walk in and articulate exactly what they want, exactly on cue. So the ten-minute advocacy -- how to be a ten-minute advocate that Bob spoke about earlier in the manual is an excellent resource for going right down the line. Did I think about this? Did I write this down? Did I understand what it is that I'm going to ask them for? And so I can tell them clearly what it is I want them to do? And we talked about explaining why you're the experts. So providing the supporting materials, Bob is going to pick up on that and start talking about -- is that right? I'm kind of thrown off and I'm really apologizing for this, but that strike seemed really close to me. >> BOB: So you haven't explained why you're the expert? >> LEAU: That's what I was trying to work out when we went through this. This is the life you lead and you are the expert on that and you know where each one of these things that you're asking them to change or to think about impacts your life. So never forget that you are the expert on this. That you know what it is that you're asking them to do. So now -- and also that you're part of a bigger group. I thought that was a real interesting point that Bob made earlier that if 65 percent of the people are not employed, 35 percent are. And don't they want to make it into a larger percentage or that there are 35 percent of the people in any given situation that have disabilities that are employed. And so there is a larger force than just yourself. You're part of a bigger community. It impacts more than just you. And you want to tell your own story and you want to be sure they understand it. We don't want it to turn into an anger session. You want to maintain your calm and tell them the story and help them understand it and help them understand that it's a personal story. That you've not read it someplace or that you live this every day and they have the power to help change it. So providing the supporting materials, many organizations will put together a fact sheet you can take with you and even if you don't get the opportunity to talk to them, you can leave that there. You can leave that with their assistant. You can leave that so that they have the opportunity to read through facts and figures and statistics and information at their leisure rather than trying to understand it all in the minute that you're in there talking with them. The other beauty of position papers, fact sheets, a list of frequently asked questions with good answers, whatever, is that it turns you into a less than ten-minute advocate. Because even if you pass them in the grocery store or see them on the street and recognize them and you have those fact sheets or position papers with you, you can say, you know, this is something you might consider the next time you're thinking about (inaudible) education. They will be flat erred you recognized them and probably have more inclination to read the information because you did it as a member of their community. So now we're on slide 15, Rob. And back to you, Bob, unless there are questions. >> SHARON: I don't have any E-mail questions. Are there any questions from the teleconference audience? >> CALLER: the only thing -- this is from Kentucky. Mine is not numbered when you're going through the colored -- so I don't know that it's slide 15. >> SHARON: That's Leau's cue to Rob the one who is sequencing the slides. He has the numbers on the slides. >> CALLER: Oh, okay. Thank you. >> LEAU: Thanks for clearing that up, Sharon. >> SHARON: Bob? >> BOB: Do you find that when you're going and talking to the legislature that being a constituent makes a difference? >> LEAU: I don't know that's a constituent, but if you know what their record is, if you've made the effort to look up how they voted in the past, what they are interested in, those kind of things, I think being a constituent gives you that little edge, that power, but knowing what their voting records are and what they are working with and what their perceptions are about things also gives you an edge. So I don't think it's just -- honestly, we can say we voted for you so you have to do it. We never get to say so, you have to do it, but it would be good if you paid attention to us, but I think because the way that everything is set up now, it kind of mish mashes together and we've had people sponsor bills who didn't -- who were not -- we were not their constituents because they paid attention to what we said, because we showed up on time. Because we were prepared, because everybody got to say something and they could tell that it would make a major impact on our lives. So I think you have to weigh that against what it is that you're asking people to do. >> BOB: One of the things that we also find, when you send in these teams to talk to legislators or their staff is that if you do it -- the more you do this, then very often -- we do this a lot in Washington with the national council on independent living and we'll send in teams of three or four people and they'll do what we -- they'll have three or four issues and they'll plan it out and the new people that enter into it will often talk about how, gee, I went into the first one and I didn't say anything. And in the second one when they came to my turn and people looked to me, they are able to say just a couple of sentences. By the time the end of the day comes around, those people are speaking up and talking up and really seem to know the issues and they are able to have a much greater impact. So it really says something about making sure that you have new people along with you and you give them an opportunity to speak. But then they just grow along at the pace they are most comfortable with. >> LEAU: Exactly. And we were all beginners at one point. >> BOB: That's right. >> CALLER: I ee just like to ask a question. Also would you agree not only going in there and asking to always do something, but building a relationship with them on an outside -- not outside of asking them to change the system or do bills, getting to know them personally if at all possible. Would you agree with that? >> LEAU: I think that's always a good idea. The main connection we have with everybody is that we're all people. And so the more you can see the other person's side of it, the more information you can give them to help change their perspective. For example, if somebody has never ever been in a building that didn't have a ramp and they don't -- that didn't have stairs or whatever it is that they couldn't get in to where they wanted, if they've always had access to everything, then they don't have a clue what we're talking about. So if you get to know them as a person, they can then relate to another area of their life -- I remember the time the post office was closed for three days and I had an important letter coming in and I couldn't get in and that was really frustrating for me. That must be what it's like for you. So yeah I think that's an excellent idea. Any others? >> BOB: Yeah, I really think that the one thing you can't discount here is that we're the experts. We know what it's like to be a person with a disability in our society and you really can't discount the effect that has when we're talking to somebody. If you can say I know what it's like to live in an institution and I don't want to do that anymore, I want to live in the community. Why can't we put more of these funds in community-based services? And that has an impression because a person is sitting there and looking at you and saying here is a person who is actually impacted by the legislation I'm about to vote on. And this is important, and I don't think we should ever discount how much we have to offer as a prn with disabilities in those situations. >> LEAU: Bob, you want to start talking about the next point then? >> BOB: the next slide. Decision points. Now we've gone in and you've had this meeting and you've met with the decision-maker and you have decided who is going to say what, you've presented your case. They have begun to ask you questions and you've answered them. You've given them materials. You've done everything. It's a really critical thing for you to think about before you leave that you make sure you understand and you identify exactly what it is that you want the person to do. This is one of the biggest mistakes the people make. It's real easy for somebody to say, oh, yeah, I support that. oh, that's a really good thing. It's like being against war. But it's actually getting somebody to take action and that's what we want to be able to try to do. So when you're in that session -- and this is the next slide -- you need to say exactly what you mean. So instead of saying we want your support for something, we will say we want you to sign on as a sponsor. Now, let's put it down in black and white that you're in favor of doing this. Get them to say yes, I will or no, I wouldn't. If they say no, then you have something to work W. if they say yes, then you can hold their feet to the fire. If you say to them are you in favor of something? Well, of course they are going to say, yeah, I'm in favor of it. Will they vote in favor of it? That's a different thing. So you should be saying will you vote in favor of this? Will you share this information with a senator? Will you share this information? Well, there is lots of different ways to share information. If any of you have ever been into a legislator's office will know that there is a big two foot stack of information that this senator never looks at. It's easy to share the information if all it means is they thro that pile of information you just gave them on top of that stack. If you ask them to discuss it with the senator, that's a different thing. That means you can say to them after they say yes, you can call them back next week and say I'll call you next week or give me an E-mail and let me know what their response was so we can begin to provide them more information. So it's really important that you -- when you're talking about decision points, you're saying exactly what it is that you want. In addition to that is the next slide, you need to be considering who your friends and adversaries are. You know, for a long time in the disability community we've been talking about personal assistant services in the community. And how you need to have your own home rather than a nursing home. We've never been able to get the AARP, the association of retired persons to join with us. And the reason they haven't joined with us is it scares them. They are afraid to give up the nursing homes, even though they hate them as much as we do, they afraid to give up the nursing home because that represents the safety net that they have in case there isn't good personal assistant services. If you look around the country, there are a lot of poor programs out there. So when you're in a situation with that legislator, you need to be thinking about how your friends and your advocates are. So even if they don't say, you can bring it up and you can say you know they've had a problem with this. And it's because this is a fledgling program. We're not talking about eliminating all the homes right now, we're talking about replacing them and building a strong enough system so they can feel comfortable replacing them. We feel confident if and when they begin to feel that confidence in our PA S. system, they are going to come along with us and in fact they have. So that's just an example of the things you need to be doing and making sure that you are looking at your adversaries and trying to take into consideration -- don't down grade them and say they are a bunch of idiots, if they understood the real issues they'd be on our side. You don't say that at all. Next slide -- you need to offer also as you're closing up, you need to offer assistance. Do you have research results that you can share with them? Contact people that they can get this touch with? Make sure you have business cards along with you to give them and say if there are any questions about this -- there was a question before here about establishing yourself as the expert. What you're saying is if you want to know about disability issues, come to me because I know and under stand this. Do you need letters of support that we can help you with? Are there other telephone numbers we can provide for you? Give them as much assistance you can possibly give them to make them come along with you and to convince them that you are the expert. That when they have a disability issue, that they call you. Then the last slide here, you need to show appreciation. You need to make sure they know and understand that, sure, these people work for you. With any employees, you show appreciation and gratitude for the things that they are doing. Lots of different ways you can do that. You should always follow up any visit with a letter. Next slide. Review the time and the date and the subject of the meeting that you had and make sure you thank the public official for their time, even if they may not have been in the meeting. Thank them for the time they took in reviewing the information that you know was shared with them. You enclose any promised materials that you said you were going to send. Here is the research I was telling you about. Here is other information. Here is a letter of support from this organization you were concerned about and review the commitments that they made. We look forward to the day when you will be signing the legislation because we want to alert the newspapers and other people with disabilities in our community. And then finally commend the staff. Thank the staff for the work that they have done. This is where it really happens in these offices. So it's important that you thank them and make them feel proud and happy and pleased that they were able to do something on your behalf. Because the next time when they are going to do it, they are more likely to do it if they think they'll get patted on the back. >> LEAU: Bob, I think it's a real important point that you made about reviewing the commitments that they said. Earlier you talked about saying to the staff, when can I E-mail you to see what the progress is on this? And then when you reiterate that in the letter and say we look forward to seeing what you've done on this, it also gives you more clout to say we'll be glad to release this information to the paper, to let our friends and neighbors know, to -- all of those kind of things so it's a real win-win situation every time you do one of these follow-up letters. >> BOB: Is there any questions? Comments? Anything? >> CALLER: This is Kevin at the national program office. One of the reasons that certainly we thought this training would be so important today is in traditional home and community-based services, you've got all the agencies, you know, that are out there with all their provider associations talking to legislators, whereas for especially self-directed, consumer-directed programs, it's the participants and their families that have to play an even bigger role to make sure it lasts. But my question is back to your thing about the friends. How do you get to know who is your ally? How do you get to work with them? Can you develop that part a little more? >> BOB: I didn't know if you wanted to say anything on this. >> LEAU: I was just going to say that the manual that is on this webcast has an excellent resource that's been developed. Bob spoke about it earlier, about how to put together an advocacy coalition and the example that was done in Utah, you know, and he has gone through and listed out several of the ways that you can identify your friends in the community, your allies and how to engage them in what you're doing. So I would let you, Bob, tell more about that process. >> BOB: You know, I think it's really -- it comes up several different ways. Once you establish yourself as somebody who is a player, you know, somebody who is really out there and interested and interested in participating, people will start coming to you and just start hearing that here is somebody else who -- they come to you and say would you support something that we're doing here? Or there is this piece of legislation -- there are all kinds of different organizations and groups that have common interests, whether it's the Center for Independent Living or V. A. R. C. or whoever in the community, they usually have an agenda that they are working from. Very often what else happens is that when you go in and you start raising your issue with the legislative staff, what happens is they'll say to you, well, I just heard so and so talk about it, have you ever talked to them? And you can get some ideas there. Or this is a problem and we've had people in there complaining about that issue and that tells you who some of your adversaries are. Very often what you find is when you talk to your adversary, you find out they are not as far away from your ideas as you think. So it's just a lot of different issues and a lot of different ways -- when I was in Pennsylvania, one of the things we had was a disability budget coalition, and anybody who was going to the legislature that had an issue where they were going to be asking for funding, I had this budget coalition they could belong to and it would help sort out the different things that whether happening. One of the problems we ran into is some of the things philosophically were different, but it sure was nice in finding out who the players were out in the community. If you're out there and you're out and about you're working with these decision makers, they are out there and you're going to run into people. There is just a multitude of ways that people run into that they can help them. I don't know if that answer -- >> CALLER: That's very helpful. >> BOB: One of the things that Leau and I have been talking about here is finding out what motivates politicians and it's a question, how do you find out what motivates politicians? And we're talking about the different climate that's going on, the environment, and you know the best thing you can do is study their background I think. There is always like a U.S. Congress handbook. Each of the states has a legislative guide that they create. It will tell you all kinds of stuff and where the person lives, their age, their marital status, number of children they have, where they went to college, even their religion, their military record, their education, the committees they serve on, who their aides are, and these are all really helpful things for finding out what common needs you have. It's funny, you know, when you talk about that we have several examples in there of the Utah coalition. They know every Mormon member of the Congress and Senate. And they are in there constantly having people from their Temple talking to them. They do that all the time. Another way is the newspaper and the Internet, just getting ideas about what the issues of importance are, the voting record, what they favor. It really helps when you're able to go to a legislator and say I really appreciate you voting in favor of this bill last year. Here is another issue that we think you'll find important. You can talk to constituents. As Leau was saying before, their family and friends, and it's always amazing to me when we're trying to find friends in Congress and we call -- we'll call the Center for Independent Living and they'll say, oh, well you need to talk to Mary Jones. We'll talk to her and she'll say, oh, well, yeah, I was at his wedding. Or his family and my family have been friends for 30 years. It happens all the time and you just really need to do the research to find out those kind of things. So is there anything else, any questions on this stuff so far? >> SHARON: No questions from the web. >> BOB: the last thing that I wanted to talk about today is why people don't advocate for themselves. This is the next slide. When we first started putting this presentation together and started talking about this, most of the people in the group were really interested in get something facts about the things that we need to do and going in and talking to the legislature, but it isn't that simple. It really isn't that simple. And the one thing that we found over time is that there are a lot of people that just aren't ready to be doing advocacy. And we need to find ways to get them more involved. One of the things that you often hear when you're out there, and I'll bet each of you have probably said it at one time or another, is that frustration you have when you say, gosh, it seems like the three of us are the only ones that are out there. And every time we try to go somewhere, we're the only ones that show up. And whenever they have a meeting -- when you talk about somebody really going up to the legislature, it was just a handful of people. There is never anybody new. Well, when you hear yourself saying that, you really need to step back and start saying, if we're really serious about nurturing people and getting people to think and understand about these issues, we need to start dealing with a couple of different things -- oppression and tokenism. First thing I want to talk about is oppression. This is the next slide. Two definitions of oppression: The exercise of authority for power in a burdensome, cruel or unjust manner. Another definition is the feeling of being heavily burdened by troubles and adverse conditions, anxiety and so forth. Everybody is oppressed. I don't care who you are -- sometime in your life you've been oppressed. If you're a minority, you've been oppressed. If you're a woman, you've been oppressed. If you're a Catholic, you've been oppressed. If you have a family, you've been oppressed. There are things that happen in that oppression that make us feel like we don't have any way to speak up. And when you think about it, we always say -- this is real common and you hear it all the time -- these people work for you. Sure they do. They do work for you, and they live off your taxes and all that kind of business, but doggone it, these people that we elect to office tend to be white males or well educated, they are tall and good looking. They speak well. They are well educated. They dress well. And they are the head of the debate team in college and the president of their class -- these are people -- they are in these positions because they've got a lot of talent. And lot of times what we tend to do is discount what we have to offer. And that's a form of oppression when you allow the way somebody looks to impact what you're thinking, that's oppression. I've put a couple of slides in, to give a few real obvious examples of things that happen in society that cause oppression. The first one -- which is the next slide -- is a picture of Jerry Lewis from his telethon back in 2000. There is Jerry. He just went through this on Labor Day, and I don't know if anybody listens to this anymore, but here is this guy perpetuating all those stereotypes that we've talked about in the beginning. This guy talks about children and being sick and dying and deviants and they are poor people and they have to be hospitalized. That isn't the way things are. Most people with multiple sclerosis aren't sick. Most people aren't children. We have to stop perpetuating these kind of negative images. Do you give money to people who have bladder problems? Or do you give money to children so that they can live? That's the image he continues to perpetuate that people with disabilities are sick and dying and that need your help and so that's oppression. The next couple of slides in there are cover girls and Nikki is the next one. These are two slides that were taken right out of magazines that people would see that you perpetuate the idea that this is what you should look like. Well, nobody -- very few people look like this. These are the images that we have all the time that tell us what we need to be looking like. The next one is the one I want to spend a little more time O. I want to read you what it says. It's the picture of a shoe and let me read you what it says here next to that. Fortunately the Air Dri-Goat -- that's the name of the shoe -- the Air Dri-Goat features a patented goat-like outer sole for increased traction so you can taunt mortal injury without actually experiencing it. Now, right about now you're probably asking yourself, well, how can a trail running shoe with an outer sole designed like a goaf's hoof help me avoid compressing my spinal cord into a Slinky on the side of some unsuspecting conifer. Thereby rendering me a drooling, misshapen non-extreme trail running husk of my former self forced to roam the earth in a motorized wheelchair with my name embossed on one of those cute little license plates you get at carnivals or state farms fastened to the back of the chair? To that we answer, hey, have you ever seen a mountain goat, even an extreme mountain goat, careen out of control into the side of a tree? We didn't think so. Now, needless to say, this didn't last very long for people were complaining about it and they took it off. This showed up and it perpetuates it again about people with spinal cord injuries. We need to be thinking about ways in stopping these kind of stereotypes. If you look at the next slide, there is a guy named Hale Zukas. He was one of the early founders in independent living. He said when you're fed garage all your life, you begin to develop a taste for it. Well, isn't that true? And when you have this stuff shoved down your throat all the time, pretty soon you start to believe it's true. If we're going to deal with oppression, and get people really involved there advocacy, you need to get people understanding that they are oppressed and there are all kinds of things out there this society that contribute to that oppression. There are some tools that you can use to do that. You can always call me up for one thing and I can give you some new ideas on how to deal with this. But there are manuals out there. You know, if you go to www.ilru.org and you just write in to the -- there is a search engine there. If you just write in to that beyond rhetoric, there is an excellent manual that was made back in 1996 called systems advocacy, beyond rhetoric. So you go to the website. You write in beyond rhetoric in the search engine, and what it will do is it will pop up a training manual and this manual is just full of exercises that people can use to help recognize the oppression that they are experiencing. When people recognize oppression, they finally get that a-ha and then what happens is they'll get angry. When you have a person who is angry, you have an advocate. You have somebody you can turn into an advocate. That's the first step we need to be going through. Now, I also wanted to talk to you about tokenism. There is a definition of tokenism that says it's making only an outward sign or expression. That's nod very good in my mind -- tokenism that we're talking about here is the acceptance of a symbol or something that would be kind of a gesture of importance. Very often what happens in our society now is people want to take people with disabilities to come in and advocate for change and put them into situations where they essentially are getting patted on the head. We're not only listening to what you have to say, but we're trying to give you some authority and make it appear you have something to say and the fact that we're listening to you when in fact we aren't. It doesn't always happen, but when it does happen, you really need to be looking out for it. Very often if you belong to any organization that is are just advisory councils, it's a very good example of something that may be something perpetuating tokenism. Not all groups are perpetuating tokenism, some are. And what you need to do is be looking at it. Do people on those councils ever disagree or speak up or question things, then maybe they are being tokens. Or if they allow people to act as if they understand them and they really don't, they are being tokens. If they are intimidated by degrees or if they allow patronizing attitudes -- They don't try to influence decision-making processes or they don't recruit allies or develop strategies, then maybe they are tokens. If they accept an advisory role rather than a policy making role, then maybe they are tokens. If they work with groups and manage people instead of assisting them, if they are more worried about their resume than the responsibilities, then maybe they are tokens. Okay, any questions? Anything else? >> SHARON: No questions from the web. Are there any questions from the teleconference? >> LEAU: One of the things I want to leave you guys with is really a nice summary to the stuff that Bob just said. And Ed Roberts used to say thanker was the emotion of change, but don't let the anger be the change. I love that because you have to be angry enough to want to change something, and as Bob was talking about the tokenism, I'm thinking about remember that comedian who used to go "here is your sign." maybe we should start carrying signs saying tokenism. And you can look at it and say that was tokenism, how can I change that. And the beyond rhetoric should make everyone angry. The things that go on should make people angry. And as each person becomes a credible advocate and makes their appointments with time and knows their talking points and does the follow-up letter and begins to be seen as that disability expert by the policymakers, then we can move that oppression and tokenism to -- I don't know if you want to say garbage dump, but that's what has to change the most is the filters that other people see people with. And I think the classic example of the Jerry Lewis telethon over Labor Day, why aren't people as up in arms about the things he says about people with disabilities as they were about the slur he made about people who have a different sexual orientation? After all these years of all the horrible things he said, and nobody called him on any of those, so that movement started very slow, and has now gained great power and are seen as a driving force in policy making, and they are the people that we need -- the gay and lesbian community have done a remarkable job of positioning themselves and I think people with disabilities who are a larger percentage of the population can strive for that as well. That's my little rant and stepping off the soap box. >> BOB: It does raise a question. Some of this I'm curious about things people out in the different states are thinking. I'll ask two: You've given examples of things to do as an advocate. Can you give examples of things that you've seen that really didn't work? Or is it just the opposite of things on the slide? Or your words about anger raised a question for me and it goes like this: And you can just say I'm totally off base -- it's sort of like what my purpose is. If my purpose is, let's say, to get someone to support a different piece of legislation or to make a certain change in their attitudes, I suspect that sometimes it's right to get angry and sometimes it's the wrong thing to do. Or if my goal is to really get someone to change, do you have thoughts on what works under what circumstances? >> LEAU: Well, the one thing I would say to you is that anger needs to be directed at the situation, not the person. And that would make a difference. Even if you're angry with the politician for voting the wrong direction, if what he sees is the anger at the situation rather than -- you know, when we were first talking about the examples and Bob was saying the post masters solution was to have somebody come in and get him every time? Well, that would make me angry, but I couldn't be angry at the post master because he didn't have any other solutions figured out. And so I would have to be angry at the situation and angry at the situation enough to want to change it. And do my homework and figure out other ways to help them. A lot of times when the anger takes over, the advocacy goes down. You have to be angry enough to want to change something. You have to know the information enough to help someone else change something, and confronting somebody in anger doesn't change their belief. Sometimes it solidifies their beliefs, but being angry at a situation and hieing them understand how unjust, unfair you know -- whatever -- the situation is, is the first step to helping them change their beliefs around that. I don't know if that answered your question or not. >> CALLER: I think it's a real open one -- is that the goal and then are there certain times tactics work and other times they are using different works? >> LEAU: Oh, that's absolutely an accurate statement. You have to figure it out each time there. Are certain rules you have to do. You have to show up. You have to be professional. You have to follow through. You have to do all those things that -- because it's a double blind thing. Everybody has already made these assumptions. People with disabilities are unreliable. They are unpredictable. They are all the things that Bob talked about. So we're counter acting that and then we're trying to change things. So I think there have to be a lot of right answers to your question, but I think that the anger and moving through the change -- I'm not saying this right. The anger as the emotion of change is how you recognize what needs to be changed more than how you change it. And I need to paraphrase that, but that's my Humble but adequate opinion. Anyone else? >> CALLER: How about back to -- I forget which one of your slides. Any thoughts for someone who has never done this before? You know, like it is scary or it might be. >> LEAU: Absolutely. >> CALLER: Go with people? Any thoughts about what's worked for people in the past? >> BOB: That to me is absolutely the best place, is to go with somebody, to go along with them because that's always the way we find works best. The organizations that I work with, when you take two or three people in at one time and just sit there and watch, but it's always remarkable to me how by the end of the day they'll come out feeling like -- feeling great about themselves, you know, and just getting the opportunity to participate a little bit in the beginning and a little bit each time. Every meeting a little bit more. And then next time they are taking a newbie along with them. It happens fast. >> LEAU: There are strength in numbers, even if the number is two. So if someone has done it once and they bring someone along with them, it's just what Bob said, each little micro-movement is still a movement. And the more people are used to doing it and the more people are confident and the more people look at their notes, the more they will be willing to seize those opportunities to be a ten-minute advocate or the 30 minute advocate if they're given the opportunity. Anyone else? >> BOB: Does that answer your question? >> CALLER: It's helpful to me. >> BOB: Well, if there aren't any questions, I'll turn this back over to Sharon. >> SHARON: Thank you. And I'll in turn turn it to Lee. >> LEE: Can you hear me this time? >> SHARON: Yes, we can. Thank you very much. >> LEE: Thank you, Sharon. And thanks, Bob and Leau, for the presentation. I'd also like to thank the captioner that has captured everything that was said today. That was great. And our technical guy, Rob Dickehuth, and most especially ILRU for providing us with this opportunity. Remind everybody if you could, fill out your evaluation form. We'd be appreciative. If you have any suggestions for future webcasts, we'd like to hear about that, too. And thanks again to everyone for participating. >> SHARON: Thank you, Lee. Good afternoon, everyone. >> LEE: Thank you. >> BOB: Bye now.