SANDRA HARRELL: Welcome, everyone. Thanks for coming. Today we'll be getting started right at 2:00 PM Eastern time and letting everybody else in the room. So I just wanted to say welcome, and we'll get started in about four minutes. This is Sandra. Welcome, everyone. We'll be getting started in about one minute. I just want to make sure that you didn't have to listen to total dead air. We'll be getting started in about probably 45 seconds at this point. OK, welcome, everyone. Thank you so much for joining our webinar today. I'm Sandra Harrell, with Activating Change. And we are so pleased to bring you this webinar as part of our End Abuse of People with Disabilities webinar series. I am a white woman, with dark-rimmed glasses, and blonde hair. I'm wearing a dark blue navy pullover. And I'm coming to you from my home office, that has a love seat behind me with pillows on it, and a yellow or mustard color curtain hanging against the wall. Before we get started today, we wanted to provide you with some information about-- some of the accessibility features of our Zoom webinar platform, as well as how you can interact with us throughout the session today. First of all, you should be in listen only/view only mode. That means you can hear and see us, but we cannot hear and see you. We do have live captions for our event today. We have a live captioner. We do use the built-in Zoom webinar for our captions. So if you would like to turn on captioning, please go to the closed captions symbol at the bottom of your screen and select the arrow to the right of that icon. The words underneath the icon should say live transcript. You can either then select, show subtitle or view full transcript. So once you do that, you will see the words I am speaking, appearing below my video window if you're in show subtitle mode, or to the right of your Zoom window if you are looking at the full transcript. Please do note that the full transcript view may obstruct your view of the chat, so you may have to rearrange your windows a little bit depending on what you need. We do have a multilingual space today. We have American sign language interpretation and Spanish language interpretation available. We have posted how to access Spanish language interpretation in the chat. And then we also wanted to note that we will be pausing every 15 minutes for an interpreter switch. This is just to ensure the highest quality of interpretation. When that switch happens, you will hear my voice come on, I won't put my video on, but my voice will come on to just say, hey, we're going to pause for an interpreter switch. Don't be alarmed when that happens. It's just a way to make sure that everyone has full access throughout our event today. Meaning, everyone is able to know when to redirect their eyes back to the screen. So you'll be hearing my voice a couple of times, but that is only to do this interpreter switch. We also like to make note that it is really important to us to have complete access during our virtual sessions. So if we do have a technical problem, we will pause to address the issue. A lot of times the issues may be user error, and we'll work with person one-on-one to try to resolve that. If it happens to be a system wide error and we're getting reports from a lot of different people that there's a certain problem, we may have to cancel this session because if it's a system wide error, it's not something that we can correct through any amount of technical assistance. So if we do have to cancel the session, please note that we will send an email to you with further information about the rescheduled session. It's very rare that we have to do that these days, but we like to make note of that just in case something happens and we lose control over our technology. We do have the chat pod available to you today, as well as a Q&A pod available to you. We ask that you use the chat pod to communicate with our hosts and with the other participants. But we ask that as much as possible, if you have a question for the presenters that you please post that into the Q&A pod so it doesn't get lost. It's just much easier to manage an influx of questions if they're all in one place. Plus, we'll be posting links throughout this session into the chat pod and it's just much easier to keep that a little less busy by putting all of your Q&A or any of your questions into the Q&A pod. Another note, if you would like to ask a question in American sign language or another language that you have requested, please raise your hand. We will confirm your need and then we will be able to give you microphone or video privileges, whichever you need. Just a note that we will be holding the majority of the questions until the end of this discussion. One final note about the chat pod, and that is that you cannot save the chat or copy and paste from the chat. This is a security measure following a handful of unfortunate Zoom bombings that happened for us. So if we share links in the chat, we'll make sure to include them in the participant materials for this session as well. And finally, before I turn this over to Leah. A note about your view, you should be seeing all of our panelists in gallery view. So right now on your screen, you should see me and you should see our ASL interpreter. And then when Leah and Cindy join, I'll leave the screen, and you should be seeing Leah, Cindy and the American sign language interpreter. At any point, if that's not happening for you, please reach out to us in the chat and we will help you troubleshoot to figure out how to fix your view. And for those of you, I know a lot of you will start listening to this session and be like, oh, this is great. I want to share it with my colleagues. Don't worry, we will be recording today's webinar and we will be posting the recording and the PowerPoint and any links that we share to our End Abusive People with Disabilities website within the next couple of weeks. And we will be posting a record of attendance for this session in the chat pod towards the end of the webinar. So with all of that, I would like to welcome Leah, and I believe Cindy, but I think maybe just Leah for now to the floor, and I'll turn it over to you. LEAH GREEN: Thanks, Sandra. I'm Leah Green, and I am a senior program associate at Activating Change. I'm a fat, white woman, with tortoiseshell glasses, and curly bangs. I'm joining you from my home office in the basement, and you can see a jungle mural behind me and a white chair in the background with a yellow blanket on top. Today, we're going to talk about centering our movements around self-advocates. So here in a minute, we're going to launch a poll to learn a little bit more about all of you joining-- excuse me-- joining us today. I then am going to share a few brief PowerPoint slides to center us on the topic of self-advocacy. And then the bulk of our time together is going to be hearing from a self-advocate named Cindy Bentley, who we will introduce and who will join us later. So let's start with the poll questions to learn a little bit more about you. Tere, could you launch the first question? So the first poll question is, "what category best describes your organization?" We'll just give you a minute to respond. Almost all of you have responded. It's looking like we have a mostly advocacy programs, a lot of disability organizations. If you put other, feel free to put that in the chat box what your other is. Just waiting to see if there's anyone else. He wants to join. And then actually, it looks like we already have our second pole question going at the same time which is, "what is collaboration with self-advocates looked like in your work?" We're going to dive real deep into what self-advocacy means. But just to answer this question, self-advocate is a person with a disability that has received training to advocate for themselves and others. So what has collaborating with self-advocates looked like in your work? Give you about 30 more seconds to respond. We're going to end the poll. Share the results with you all. So it looks like 60% of folks are from advocacy programs working in domestic violence, sexual assault advocacy programs, 22% of you are from disability organizations, and then almost the same amount of defined yourself as other. And again, feel free to just pop that in the chat box if you want us to know what other means to you. And then our second pole question about collaborating with self-advocates. It looks like about a fourth of you say that your organization proactively seeks out self-advocates to collaborate with on a consistent basis, including joining your board of directors. 40% of you have said your organization has collaborated with self-advocates on occasion and for specific projects. Looks like about almost 10% of you said your organization hasn't yet meaningfully collaborated with self-advocates. Super glad you're here. I think you will learn a lot. And then it looks like about a fourth of you have also said, I'm not sure what a self-advocate is or what collaboration looks like, but I am ready to learn. So again, you have found the right place to be. So we'll stop sharing those. So I'm going to just share a PowerPoint so we can just learn a little bit more about self-advocacy from a bird's eye view. So this is our webinar-- Nothing About Us Without Us-- Centering the movement around self-advocates. So just a brief history about self-advocacy. As many of us on this webinar know, people with disabilities have historically had people around them making decisions that impact their life. So here on the screen, we show the court system, parents and guardians, doctors and psychiatrists, caseworker, there are others, those are maybe the four most common. Other people, these people have decided what they can do, what they need, and what they can have. So the self-advocacy movement was born in the 1960s in Sweden, and the idea spread then to Great Britain, and Canada, and the US in the early '70s. And in Oregon, a group in the early '70s called People First was formed. Because they felt like their disabilities were secondary to there being a person first and foremost. So they named their organization People First. From there, the idea of self-advocacy spread across North America. So what do we mean by self-advocate? A self-advocate is someone who has learned how to speak up for themselves and the things that are important to them, and they can ask for what they want and what they need. They also are aware of their rights and responsibilities. And they make the choices and decisions that affect their lives. We're going to spend a lot of this webinar talking about how to authentically collaborate with self-advocates. So here at the top, we just want to define what that authentic collaboration can look like. So authentic collaboration with self-advocates requires that you include them in meaningful ways into your work. So you need to create an environment where they're allowed to make decisions. They have the opportunity to learn leadership skills. They're able to see change and progress as a direct result of their contributions. They have ownership and control in the decision making process. And they are respected, and trusted, and their voices are heard and valued. SANDRA HARRELL: This is Sandra calls for an interpreter switch. LEAH GREEN: So we're going to now have Cindy Bentley join the conversation with us. So I'm going to stop sharing. And Cindy, if you could come on camera while I introduce you. Cindy Bentley-- oh, there you go. Cindy Bentley is an incredible person for a number of reasons, just a few of which are. Cindy is a former Special Olympics International Female Athlete of the Year, having won multiple gold medals from the International Special Olympics. Cindy has had dinner at the White House twice, meeting two different presidents. Cindy was asked by the Wisconsin governor to be the first person with a disability to serve on the Wisconsin council on Developmental Disabilities and still serves on several boards today. And last but certainly not least, Cindy helped create and is now the executive director of People First Wisconsin, an organization which helps people with disabilities speak up and make decisions for themselves. Cindy, I'm very delighted to be with you today. Would you like to introduce yourself? CINDY BENTLEY: Yes. Good afternoon. My name is Cindy Bentley, I'm the executive director of the People First Wisconsin. I'm wearing a yellow blouse, with a flower-- oh, different things in it, black pants, black tennis shoes, and white socks. I have short hair, and I'm wearing earrings. And I'm in my operation manager's house doing the webinar, and heard on the table there is a candy dish flowers, thing with napkins, my water bottle, some candy, chocolate, and then my little thing that makes it a little bit brighter in here. And of course my Snoopy cup that had coffee in and my strip the paper for today. So that's it. LEAH GREEN: Thanks, Cindy. I'm jealous of the snacks you have on your table. I just have water. You really sets-- CINDY BENTLEY: The only thing is missing is my kitty cat. She's at home. I have a cat. Actually, I'm surrounded by two sweet baby doggies, so. LEAH GREEN: That's sweet. So Cindy, could you just tell us a little bit more about your work at People First Wisconsin? CINDY BENTLEY: Yes, People First is a statewide advocacy group. People First was started in Scotland, and Lisa Mills which came from Scotland that lives in Madison, Wisconsin, she thought we should have a People First, so people can be able to talk for themselves. So I've got involved with People First from Lisa Mills, been in it ever since not working. First I was just a member. And then my friend asked me if I wanted to-- there was a job opening at People First. And she said, you need to like-- come on, Cindy. You need to apply for this. I told her I didn't have a college degree, but I found out you don't need a college degree to advocate. So I got the job right before my birthday. And I've been working at People First with 26 years, going on 27. Yeah. LEAH GREEN: Wow. Thank you, Cindy. Could you tell us a little bit more about the kind of work that People First does? CINDY BENTLEY: Yeah. People First, we advocate for the people and with people advocates for people with and without disabilities. We talk to our governor's office about things that we want changed. And now, you know, to the governor's aide, like on caregiving, housing, we have three barriers in People First-- housing, transportation, and of course, in jobs employment. So we want people like myself working. We don't want to be in a shelter workshop. I started out in a sheltered workshop and it was just not for me. LEAH GREEN: I love that thing, Cindy. CINDY BENTLEY: So many barriers, you know. So many barriers to people with disability. They still don't think people can work. And my friends still don't have a job, their dream job. I happened to get my dream job in this working for People First, and it gave me a lot of confidence that I can do this. I don't have to go to college at all. You just need to be advocating for what you believe in. So there you go. LEAH GREEN: Thank you, Cindy. I love that one. On this webinar, you're going to be bringing a lot of your own experience as a self-advocate. But also as the executive director supporting a lot of self-advocates in your community, and that support and supervision you provide. So you'll be bringing a lot of perspectives to the table today. CINDY BENTLEY: Absolutely. LEAH GREEN: So as we talked about before, the webinar is called Nothing About Us Without Us. So I just thought, let's start there. What does that phrase mean to you? And your work? CINDY BENTLEY: Well, it means you cannot do anything without us. You can't be making decisions that we don't approve of. You need to ask people, you also need to have people around the table. I sit on a lot of boards. We need more diversity on boards, and we be running it. We are on the board. And I always say, I'm not on your board for charity. I'm on your board because we help you change things in the world, change things. And so you asked me to be on the board, governor's board or whatever. Then I have my own voice to what I think should change, and what my peers, and we need more people around the table. Not just put a person on the board because you need to fill a gap in there. You need to have a person on the board because we want to help. More numbers and power, you need to listen to people with disabilities around boards and around whatever, because we're pretty smart people if we're given a chance to use our voice. Yeah. LEAH GREEN: Thank you. CINDY BENTLEY: You're welcome. LEAH GREEN: You know, I've read the book that was written about you. And-- CINDY BENTLEY: Champion. Yes. LEAH GREEN: Yes, I was going to have it right next to me to show, but I left it upstairs. So I read a lot about your life, and we have spent a lot of time talking about your life. And I'm wondering if there's a little bit more that you can share about your experiences earlier in life before you were made an executive director that really sort of you weren't allowed to make as many decisions. And so sort of-- CINDY BENTLEY: You know, I was actually-- Yeah. LEAH GREEN: --Yeah. CINDY BENTLEY: I was actually in a state institution, not because I was bad. My mother, of course, was born with a lot of problems, only given 24 hours to live. Foster care ladies decided to burn, gave me third degree burns, landed up at the institution with no voice. No one was listening, not one person. Everything was done for me. I couldn't pick out my clothes, or what I wanted to eat, or when I wanted to get up. We got up at 4:30 in the morning to wait, to eat at 7:00 AM. And sometimes I cried myself to sleep because sometimes they put us to bed so early I couldn't sleep. Not when the sun's out yet and it's still light out. But then I left the institution June 1st, 1984, where that's where my life began in Oakland Group Home, which was to me a small little institution. But at the time I was scared too. But I remember my guardian told me you're not going back to southern, so we're going to have to make best of what I have out here. It was rough for a while. But I was in Special Olympics. And I think that's what saved my life too. I continue to be in Special Olympics when I left the center, and that's really helps me. And it took me places, as you notice. But I guess somebody coming out of an institution, they never had the wildest dream that I would be a director of anything. Because I say this in all my conversations to the psychologists, just came out of the psychologists, not mouth, not mine, that he wasn't going to amount to anything and you would have to stay. You would have to live in a group home and work in a shelter workshop. A, I don't live in a group home. And B, I don't work in a shelter workshop. I walk right out of the shelter workshop because it wasn't for me and it was not challenging enough. I wanted a real job, where I met Dr. Laura Owens. And when I met her, my work started. I got had all kinds of jobs. But my dream job is what I'm doing now. And so I look at myself in the mirror sometimes, Am I executive? But I had to earn that right to be a director. I had to prove to people that I could do this with the right help. I have a job coach. And I have a operation manager. And everything makes sure I have everything I need every day like this, getting me ready for this today. I need a little help. I'm not a good writer. I'm a good talker, which is good because that's my gift. My gift is not writing or the computers. But when I talk, I talk from the heart, and let people know that I may not can do everything, but I can do what I can do and show people that I can do this. And I'm always getting praises. In Wisconsin, I'm the first director that gets paid. The first director. Not the last director, but the first. That gets to be the director with everything in place and getting a decent wage. And so that's what it's all about. To me, it's not about the money. It's about that I'm helping my peer. My thing was to help people with disabilities to the best person they've been. When I was born, we didn't have a voice. We were just sent to institutions and sent out of our community. Not no more. This is the 21st century. So we want to show people that we can do what we can. Just give us a chance, talk to us, get to know us. I'm funny. I like sports, all kinds of things. But I need to be working. I feel good when I'm working. Not just sitting at home watching TV. Making my own money, and buy what I want to buy with my money. Somebody telling me, oh, you can't have this, you can't have that. And so. yeah, I buy my own groceries, buy everything, and I got have to have money. I have a cat, so I have to pay for the everything for the cat and my apartment. I don't want no handouts. I want to be like anybody else in the community. So that's what I can say on all that. LEAH GREEN: I really appreciate that. Cindy, you had a lot of life experiences that a lot of people with disabilities have had where, you know, from a young age, folks were telling you what you could do, what you could eat, what you could wear, where you could be, how you could spend your money. But you're sort of first experience is in Special Olympics, where maybe the first glimmer of-- CINDY BENTLEY: Oh, Mrs. Shriver was the best. Mrs. Shriver always believed that people like me need not only be on the playing field, but also in the workforce. She wanted us to have a job. She wanted us to have our own place. And she wanted us to be happy, and have good health care. Yeah. I guess a healthcare story too. Mrs. Shriver's sister, they were going to pull out her teeth, and she said absolutely no, not going to happen. She got half an athlete thing for the dentist. Then she got the opening eyes, so people could actually athletes could see the track in that. We get free glasses, we get free dental care from Special Olympics. They check everything. I just had a thing or up at our state game for basketball where they checked my balance in that, need to go to physical therapy to get my balance. It's all because I was born with fetal alcohol syndrome, and that's where my balance ever all the effects of the stuff that my mom put in me when I was in her womb, I was a baby. And they didn't have a lot of education then. So Mrs. Shriver fighting for athletes to be healthy. And bless her heart. I know she's always watching over us. She went over the rainbow-- I don't like the other word-- but going over the rainbow, she still watching us and making sure that Tim Shriver is doing what he has to do and he's a great guy too. Don't worry, Special Olympics is-- we're going to be fine. And I'm still playing sports. And because it's healthy for me, it keeps me going. My goal is-- oh, sorry. LEAH GREEN: That's OK. CINDY BENTLEY: Well, I'm sorry. SANDRA HARRELL: Let's pause for an interpreter switch. CINDY BENTLEY: Yeah. I guess I'm just passionate. Sorry. LEAH GREEN: No. You said your voice is your gift, and it's true. I just wanted to clarify for the audience. Miss Shriver was the person who started-- CINDY BENTLEY: She [INAUDIBLE] Special Olympics in 1968. And Tim Shriver-- it was her son which helped. He's a president and CEO of Special Olympics International. It was started in Mrs. Shriver's backyard, which I've been in her backyard. It's not a small backyard, trust me. But she started a swim program and it grew from there. And now we have unified sports, which we are playing on the same playing field with people with and without disabilities. LEAH GREEN: So you went into Special Olympics, you learned a lot of skills and you've made it. CINDY BENTLEY: It made my life, let me tell you, because I was so angry at the center. I was young, teenager. My mother just had died while I was there of all her stuff. And this coach there said, you know, we're going to start running every day. You're going to start running. And I started running. I hated it at first and complained so much. But then I began to like it. And then I got other people involved. And then I was starting to feel better. So sports saved me. I think I might have landed up with like my mother, maybe in prison. My mom was in prison for a while, and I didn't want to go there, and I didn't want to be like my mother. But I still love my mother, but I didn't want to be like her. So thank heaven, Special Olympics came along. And thank God the coach I had also came along. It was not always pleasant when I was running, but it got better as I did it. LEAH GREEN: I would say so. You earned a couple gold medals. So I think it got used-- CINDY BENTLEY: More than a couple. [LAUGHS] LEAH GREEN: Cindy, in one of our conversations, you said to me once, people try to use people with disabilities without really-- CINDY BENTLEY: Oh, yes they do. They try to use people like-- you know, making them do things that they shouldn't do, or taking their money, taking things out of their apartment, taking things out of whatever. And then the group home and they just try to-- oh, we're your friends, and then they either hurt you. I was abused too. Yeah. I know what a real friend is. I used to trust a whole bunch of people, but they were the mean ones. And so I have my guards up sometime, but I'm still have all the trauma of it. Yeah. They took the checkbook and wrote out checks. My own family did that, almost put me in the poor house. I had to start from scratch a few times. Starting stole all my money out of my purse one. And other people did that to other people with disabilities. We don't know-- I didn't know a lot about money because I wasn't giving money at the center. I had to learn. Now I keep my money safe and don't put it-- I'm always looking to make sure everything's in my wallet just because I'm afraid something's been taken out of it or something. I don't know. It's a fear I guess I have. LEAH GREEN: Yeah. When we were talking about that before, you talked a lot about organizations that used-- CINDY BENTLEY: Yeah, organizations too. Yeah, because don't use us as-- that you need to feel something. You need to make sure we're going to work in your organization. Treat us like an employee. I don't want your charity. If I'm going to be working with you, I want to be treated just like an employee. Doing something wrong? Call me on the carpet. Or help me, help me, help me. I don't just give me a desk and say, OK, here you are. No, to make yourself look good. And that's the truth. You know, back in the day, they would hire people with disabilities and it was just not good. We want to be employed. We don't want the charity. I never want somebody charity. If that's the way it has to be. You hired me, I went through the application, then I'm an employee, not charity. Yeah. What do they call that? And when you're in a an employee, I guess so whatever-- forgot the name you use. Oh, well, but we are to be treated just like you treat somebody without a disability. And as far as I'm concerned, we all got it. Everybody probably on here has got some kind of disability. You know, you may not be good on the computer, you may not-- you know, whatever. So a lot of things I can't do, but don't use my disability. If you're going to take a job, then be serious about your job. I think that's why I've been in it as long as I have because I work hard every single day in my life. My first thing I do, I say this too, I get up in the morning, I go to the mirror, thank God I'm awake. What's my thing for the day? My thing was to talk to you all you night people on here and tell you how we want to be treated. Don't just say, oh, poor, Cindy. No, I don't want to sit at a desk and be poor Cindy. I want to be included in whatever I'm supposed to be doing for that day. So that's what I think in a nice way. LEAH GREEN: Is a very nice way. Could you share a little bit about what inclusion then looks like or feels like for you? How do you feel included when you work-- think about maybe when you work on one of those boards, the governor's board, with other organizations. What does inclusion feel like to you? CINDY BENTLEY: I'm pretty much included on the boards now. I think they get it now that we're very important to those board. We teach them. We live this every day our disability. We live it every single day. We live it. I live the diversity part of it. But that don't make no-- you know, and I'm accepted. I just say what's on my mind in a nice way. It's always, I do. But I'm not going to cover coded. If I'm going to say something, it's got to make sense. And they said, oh, thank you, Cindy. I'll say thank you, and I like that. A lot of times I know more than what people think. I know. I read the paper and I look up every things about people with disabilities. We know we have a disability, but just treat us like I'm treating you. So Leah, I'm treating you like you're treating me and you treated me with respect. And that's what it's about. It's not about, oh, Cindy. Just treat me like a person. I'm on your board, then just treat me. And I'm on a lot of boards and they treat me so nicely. It's a true. And sometimes I have a lot to say and sometimes I don't. But I listen to and then I react to what I think that change. And then, yeah, so I do both. But you got to teach people, people that don't know us. We got a brain. We read, maybe we don't read like they want us to read, but we read. We're sensitive to other people's needs. Just ask us, you might learned something. Some people told me all the time they learn something from me all the time. That open your mouth up as a advocate and say what's on your mind. You want to be mean about it. Thank you. LEAH GREEN: Thanks, Cindy. CINDY BENTLEY: I don't try to be cruel to nobody, but we have to be truthful, now meaning with our selves but with the people that we're on these boards with too. LEAH GREEN: Yeah. When we've spoken about this in the past, you've also said that you feel included when you can see that they're listening to what you're saying. They're not just sitting there waiting for you to finish talking. You can tell they're really listening to you. And then they take what you've said and they apply it to their work. They do something with the information. They don't just say thanks and walk away. Something happens with that work. Yeah. CINDY BENTLEY: Every time I'm doing this or whatever, I'm teaching somebody something and I like that. I like teaching people. I don't say I told you so whatever, that's inappropriate. But I do say I'm happy. I know when somebody is not listening to me, I said, OK, not for me. Bye. I just say goodbye. I don't have time for it. I know when somebody is listening. You don't have to look me in the eye, I know. If you're for real, then I know you're for real. If you're not, I'm not going to waste my time. Nope, not at all. I'm get along with mostly all people. And I don't make fun nobody. I don't. None of that. And I teach young people too. If you want to be respected, you better just be yourself. I have my down days where, things don't go the way I wanted, or I'm just like struggling with this, but then I pick myself right back up too. One thing I am going to say, we have to learn to fall, make mistakes and get back up. Don't just, OK, I made it this mistake, and oh, poor. No. If I made a mistake, then I just have to fix it. I have to fix it in some way. We need to be able to fall, make mistakes. I remember my first time I was at People First and our old computers where you had to put these disks in or whatever, I pushed the wrong button and lost all the data. I thought I was in serious trouble, but I wasn't because they had these things where they can save all this stuff, I said, oh, yes. Thank you. But I was so scared because I didn't know that much about. The computer I got now it's fancier but it's kind of better. You don't lose anything. It's so that's pretty good. But you know what I mean, those-- whatever you can put in, it's all saved so. Glad we don't have those computers anymore because they were like, oh, boy. [LAUGHTER] LEAH GREEN: OK, so Cindy, we've also spent a lot of time talking about what it feels like to be the only person with a disability in the room, or the only Black person in a room. CINDY BENTLEY: No, I don't like it. LEAH GREEN: Yeah, what's that feel like? CINDY BENTLEY: We need all kinds of people around the table. You need African-American, you need Latinos, you need Spanish. All people that talk different languages because they all got something to say. African-American world is a lot different than the Latino world, and you know, Spanish. But I like it when they talk Spanish because they'll be they're able to talk in their language. And they go through different things than we do. I found this out for myself. Latinos are different than African-American, African-Americans are different than Latinos, Spanish, too. But one thing I know we got a good common in, we all love food and our culture. Lots of good food, different food. But we're different. They come from different countries. And my church is very diverse. I go to Eastbrook Church and we got people from South Africa, Latinos, all kinds of-- and it's really good, the Congo too. But when we get together, every month we have a dinner or luncheon, and we get to taste other people's foods and yummy. Food brings people together. And I just think we need to do that. I like to see more African-Americans, and Latinos, and Spanish people around the table, along with American people they call themselves or whatever. I don't know. I have no idea. And I like to see people with disability. We can run those meetings. Maybe we need just two people and we run the meeting because we can run it. We just need somebody to help us with the writing. Most people I know with intellectual disability can't write that well, some can't. Some can't do the number thing, I don't care about that. I care about this communicating. I got somebody that takes care of the budget and all that. But we can run, we need more people. My goal is before I go over to rainbow is to have all kinds of people around the table running the meeting, not just the people that run the organization. I think it's a good thing. I think that's a good dream to have. LEAH GREEN: I think that's a very good dream. CINDY BENTLEY: You know. SANDRA HARRELL: Let's pause for an interpreter switch. CINDY BENTLEY: Yep. LEAH GREEN: So Cindy, you were sharing about what it feels like to not be included, but we sort of smoothly transitioned into, what help you or other self-advocates need to have this authentic collaboration? How can organizations create a space for you that you feel supported in being an expert on their team? CINDY BENTLEY: Let us try. We need help. Yes. We need somebody to probably do the writing. We'll need somebody like an interpreter in case we do have somebody that's deaf in there. And I know I'm not good at organizing papers. I always lose papers. I'm not good with paper. I don't like paper, which I'm always. You can ask my office. But I do this fine without it. I just talk from the heart and forget about the paper. I know I have the notes which you gave me, but I just practice that yet last night. I know what you were going to-- so I just made sure I had everything together. But we just need to support and love. We need love. We don't want to charity. We want your love and your support more than anything. Let us fail. So why I do can't write? I'll try to write it. And if it don't come out right, but what I found out for myself, I use the Google. I need a spell of word, I'm independent. Like this Google the word and I'm able to do it. And so on my second book, I'm writing what Jenny, is that I've been texting her, she'll text me something and I'll text her what I want. So I do it that way because I'm not a good writer. So there is so much advocates can learn. And I'm teaching myself. I want to be independent, but I also know I need help. And I always need help on this job. You know, I will. And that's OK. But let me try. LEAH GREEN: As we've talked about before, every executive director of any organization has helped, someone doing the accounting. Helping them keep track of their schedule. Someone that's doing computer stuff. Every executive need help. CINDY BENTLEY: Someone doing them grant writing. I got two people to do that. See, I didn't know that a couple of years ago until we hired Nancy. And we needed a grant-- we needed two grant writers, then I needed a staff. I always thought I had to do everything. I'm the only one, and the office manager at first, and then I hired-- I got five staff. That's hard in itself. But I had six. One decided to walk, so that's fine. But I just try to do what I can. You know, what I mean? I just try. And I'm fair with my staff. My members and my staff come first. Me, I put me on the back burner. If my staff not happy, my members are not happy, that's how you should do it. You don't put yourself first. You put your staff. And I give them certain kind of awards during the year. And we had our first retreat last year. This year it's kind of hard because we've been so busy. But we gave them some ascend. I gave them some stuff, thanking them for what they do. And I feel-- I just do that. Make sure that they got everything they need to be successful. And all my staff are people with intellectual disabilities. The self, the grant, the one grant writer does not have a disability. So you just have to make sure that they're taking care, and we're doing everything to help them. And they're shining. This year, we have four self-advocates that are women, and then we have one self-advocate is a guy. We always tease him and said he's got a lot of women, a lot of women. We only have one guy. We always tease him and he kind of likes it. And I work with him too on the Thursday nights, and it's just been beautiful. We had to get rid of-- what would you call it? There was a lot of friction with this one person. I can't go into details. But as soon as we got rid of that, everybody started working together and this particular person now gets on the camera. So we were kind of blindsided. I didn't know what was really always going on. But as soon as we got rid of, I guess, the problem, everything settled down. And so I was happy I did that. There's another word, I can't think of it right now. But it doesn't matter about the word right now. LEAH GREEN: That's OK. CINDY BENTLEY: Yeah, but you know, that's what you-- I just told you that so you know. Yeah. LEAH GREEN: Cindy, would you be OK if I share some of the things that we've talked about have been helpful for you when we work together? CINDY BENTLEY: Yes, please. And I guess I didn't say I have autism until I was diagnosed with that at the doubts. So there are certain things with my autism. Organization and all that little bit of-- but I'll just say that, you can say the rest. Thank you. LEAH GREEN: Sure. Well, I know you're going to love to hear these. So the first one we wrote down together is materials written in plain language. CINDY BENTLEY: Yes. Oh, yeah. [LAUGHTER] LEAH GREEN: You want to say more about that? I just know you love talking. CINDY BENTLEY: Yeah, so the plain language-- if I don't understand how you think about the other advocates. So we've been working-- we have a grant that we've been working on plain language, where we are working on the kindest guy. And one more, they're on there right now with you guys, but I feel comfortable they'll get it together. So we want people-- we want it in plain language. So if you send me something-- and yours was actually in pretty good language, I could understand it. So you get an A. So yeah, it's going to be in plain language. You can't just write something-- oh, what's this word? I read. But I'm sure you guys have the same thing. If somebody is writing you something, oh, what is this? So, yes, plain language is very important to me. LEAH GREEN: And actually, our June DDRC webinar is going to be all about plain language. So folks-- CINDY BENTLEY: Love it. LEAH GREEN: [INAUDIBLE] are excited. You get to know more. CINDY BENTLEY: Yep. LEAH GREEN: Some of the other things you've mentioned is just sort of keeping things simple and taking our time. CINDY BENTLEY: You think simple. LEAH GREEN: Going a little slower than maybe we normally do, which honestly feels lovely for everyone for a number of reasons, I think. CINDY BENTLEY: Yeah. If you go too fast, you're going to lose me. And I sit on this long term care. I mean, there are meeting starts at 9:30 and it gets over about 3:30 most times. They talking in so much language that I can't understand. It's so boring. But you know, you do it from your house so you can walk around in your living room and that thank heavens for that. But it is over my head, some of it, not all of it. And I do speak up. I think what we have to do with departments like the DHS, departments in that, yeah, they got to put it in less words, less paper. I mean, I think Nancy can tell you, she'll make copies at her house. We might give one subject, we probably get about oh, dirty pieces of paper at one time. And I am not a person who's going to look at dirty pages, I'm just get bored. Now, if you give me a good reading book, now that's what I call good reading. [LAUGHS] I'm laughing. I told you I like to read books. LEAH GREEN: You read a lot of books? But I get, work reading for work. CINDY BENTLEY: You get what I'm talking about. LEAH GREEN: I get you. Yeah. CINDY BENTLEY: But you're good to work book because you're doing it. And you only gave me-- I think you didn't give me that much so we put it out. So that was one-- four pages. This is my kind of stuff. Four pages versus 20 pages, which I'm not going to read all, I just scan through. It's OK. I read this whole thing. Don't worry. Four pages is easier. LEAH GREEN: Yeah so the outline for this webinar was four pages so that it wasn't too pretty much. CINDY BENTLEY: I like that. LEAH GREEN: The last thing I wanted to prompt you to say more about, because I love it, you've said this a lot. Don't talk for me, ask me and I'll decide. CINDY BENTLEY: Yes. I said. Yeah. If you want to know something, you ask me. If it's about me, you'll ask me. If it's not about me, you can still ask me. I don't want nobody talking for me or getting on the phone talking for me. Let me do my own talking. And if I can't do the talking, then ask me, and I'll say yes, you can talk for me. But that's don't get on, there and start talking for me. And don't say yes to something that I may-- or say no to something I may want to do. I make the decision or we will make it together. Me and my operation manager always does that. She'll ask me. If I say no, it's no. If I say yes, it's yes so. [LAUGHS] LEAH GREEN: Yes. CINDY BENTLEY: Sorry, I laugh a lot when I'm a little on the nervous side, I know I'm doing a good job. I have a tendency to giggle when I'm nervous. So that's all. I'm almost like, you want to be perfect with this, so sorry. LEAH GREEN: That's OK, Cindy. I guess one of the last things I wanted to say before we maybe can move to the next question actually is, you told me about this experience you had recently about people that were-- I think they were maybe doing like a profile on you or something. They're writing about you, and they wanted to take pictures of you in front of a lake. Do you remember this? CINDY BENTLEY: Oh, yeah. There's no way that was happening. Now, this is correctly. This is for my 40th anniversary being on-- having a big party. But my office manager, well, she knew I was not for that. I spoke up. Now, you told me, we going down to downer was better because I was supporting a small business. I bought books out of one place and something. Now, that's my kind of thing. I mean, I do like the lake. I hardly go down to the lake because it's just not my thing to do. Now, you tell me, you say a bookstore or something? Yeah, fine. I like going to the hardware store if I need, but I'm a bookaholic. That's all you have to do is say shopping books. I'm like good food and I have meatloaf that day, and it worked out good. Don't tell me that I have to go down to a lake to take some-- if you're taking pictures of me, going to be where I would like to have it. What is good for you. LEAH GREEN: Yes. It was all about you. CINDY BENTLEY: In any day of that day turned out good, that's because I spoke up for myself. Otherwise, I wouldn't have been down at the lake with-- [LAUGHS] LEAH GREEN: As you said, smelly fish, I believe. CINDY BENTLEY: Yeah, tell me. And sometime that lake does smell like fish. No, thank you. I like to eat fish, I just don't like to smell it. So, yeah. LEAH GREEN: Yeah, I love that story because it really highlights your ability to speak up for yourself. But also, I think it's a really good example of the ways that-- some of us that work at organizations, we have a vision for what we want to do, and we don't spend enough time learning about you or your story or what you want to do. And that is such a good example of like, that's not the place where you're going to shine. That place doesn't mean anything to you. But take you to a bookstore, we're going to see so much more about Cindy. We're going to see so much about you. CINDY BENTLEY: [INAUDIBLE]. Oh, oh, another-- oh, oh. OK. Well, wait a minute. No problem. [LAUGHTER] I'm just being goofy. And I think we could add something to this too. Now, I do have the choice. But sometimes when it comes-- we need to have and I just thought of this. Sometimes if we do have choices what we want. But if it's something dangerous, you know, somebody's got to tell you, no, you can't do this. And I agree with it. Or you're sick and you need to go to the doctor. There's two ways. And then there's one for safety and health. Two, now, I always wait till I'm almost real sick. I always used to, they want to bother nobody. But when you're sick, there's something you just have to do. And you got to tell somebody you're not feeling good and they'll help you out. So yeah. LEAH GREEN: Yeah. We just have a couple more questions and then we'll turn it over to Q&A. So I'm just letting folks know, if you have questions for Cindy about her expertise as an executive director, as a self-advocate, if you have questions about authentic collaboration with self-advocates, put them in the Q&A, we are going to be ready to talk about them soon. Y So you know, from this poll, from the webinar today, we know that most of the people on this webinar are from domestic violence and sexual assault advocacy programs and from disability programs. So I'm just wondering, what do you want these service providers to know about including self-advocates in their work? CINDY BENTLEY: Yeah, you need to include the advocates. When an average kid, we know when somebody is suffering. When the advocate says, they've been sexually assaulted or whatever, you can't just say to them, get over it. You got to make sure that you listen to them. Or they can help you to figure out what's wrong, what's the advocate too. These are my peers. I call them my peers. A lot of my peers call me about things and I try to help them. If I can't help them, I will call somebody that will or get them in touch with somebody that can help them. I've learned myself that. And we're peers-- we're very sensitive kind of people-- people with disabilities. And that's don't say get over it. That is a word that you should not use-- get over it. Because if somebody says that something happened to them and they could not-- maybe it's not sex assault, but they stole money or whatever, you need to take it seriously. I don't think people make up things. And if they do, they're just trying to get attention. But most of the time, the things that happen to people with disabilities are real. And that's what I can say to them. Yeah. Listen, open your ears and listen to the person. LEAH GREEN: Yes. You also told me that it's really exhausting to share your story. CINDY BENTLEY: It's very exhausting to what happened to me. It is. Yes, it is. Brings up trauma every time I have to tell it. But why I tell my story, is because I want to teach people that, OK, I went through a rough life as a child and everything possibly happened to me as a child. How I used to say this-- I went to hell and came back from hell, but I came back a better person. And you know, I still have my guards up. I still get scared every day. Something might trigger me off about whatever. I'm always having to ask, did I do this OK or whatever? Because at the end, [INAUDIBLE],, they yelled at me a lot. And so I'm still getting over this kind of trauma. I don't think I ever get over it, but it gets better every time I teach people things. Trauma is not a thing that you get over. LEAH GREEN: Yeah. I think that's-- CINDY BENTLEY: First of all, I was involved to live 24 hours and I left. I saved me for something, and that's what I always say. God saved me for something to do better with my life, to help other people, and help organizations. Psychologists, social workers to learn about people with disabilities. That's all I can say on that. LEAH GREEN: Absolutely. I think that's such a good point because I think that a lot of people with disabilities, a lot of self-advocates have a history of trauma, whether it's-- as you said, sexual assault, or violence, or just harm that's happened to them over time. CINDY BENTLEY: And every day something's happening-- yeah. And every day something's happening and that's around. I'm at Nancy's house. Right now, who knows what's happening in our neighborhood? We don't know who we're living next door to or whatever. You know, we don't know. But if anything happened, I'm calling the police or whatever I need to do to help this person. And trauma is all over. And no, you don't get over what I got over, but you have to. The more I talk about it, I feel better. I think what I learned as a young child or mostly teenage, my faith. Because I know God wanted to save me to do something. And so he did. Made me the executive director. He made me a voice for people that can't talk for their self. So I'm thankful that I can do that. And that's my gift. So that's what I think. Sorry. LEAH GREEN: Thank you, Cindy. CINDY BENTLEY: I know I didn't say I'm sorry. I always say that, too, because-- I'm not sorry for trying to help somebody. LEAH GREEN: I know you're not. We have one last question that we worked on together before we're going to check out what's going on in the Q&A. We talked about the role of an ally, and what makes a good ally. You told me that you feel like Nancy, your office manager, is a really good ally. Could you share more about what makes Nancy a good ally or what-- CINDY BENTLEY: But she's not only my operation manager, she's a friend. And she will help me with whatever I need help on in my house, drive me to wherever I need. If I need to go to grocery store, she's there. I mean, sometimes I just need to stay at her house longer and watch Disney Channel or something, if I've had a really rough day. Or I just need some time at her house. She's opened her house, her family, her dogs. And I just feel so loved. So ally does more than just work with you. She's great. And she always reassures me everything's going to be OK. I have a hard time trusting people, but I do trust her. I really do. And I think the more I work with her, the more we get closer and closer too. Closer. And it's nice to be part of a family. I do have a family, but they're nothing. My family sometimes is very interesting. So sometimes you just have to have a family that's not your family. You know what I mean? So that's what an ally to me is that she's just wonderful as I was telling you. LEAH GREEN: Yeah. You said you've built a lot of trust between you and Nancy. Do you know how you built that trust? How you built-- CINDY BENTLEY: No, but I just trust her. I just trust her. It's hard. I got a couple more people I trust. Three good people. And the rest of them are still like-- what do you call it. My guards are still off. Yeah. And I have to say, I trust you because from this meeting you for the last month, I know I can trust you because you understand about me and about self-advocate, and you broke things down so well, and doing an excellent job with me. A lot of people don't do that. And you just take your time and very patient. And I just want you to know that. LEAH GREEN: Thank you, Cindy. CINDY BENTLEY: You're welcome. LEAH GREEN: I think it worked because we work similarly. And so how you work is how I work. So I think it seemed very easy. We like to go slow, we like to take notes. And I think one of the-- CINDY BENTLEY: And you a cat like I have, so I love that too. You're a cat lady. I'm a cat lady. [LAUGHTER] And I love seeing the cat go past here and there. LEAH GREEN: Thank you for that, Cindy. CINDY BENTLEY: And that's true. That's my honest feelings about my guards are down with you. You just so good. And it makes me feel good when I know somebody. Now I have four people I trust in my life, which is good. And I want to do these projects the best I can. So thank you. LEAH GREEN: Thank you, Cindy. One theory about how you were able to get build such good trust with Nancy is you told me you really don't like when people just sort of up and disappear or walk out of your life and not see them again. CINDY BENTLEY: Yeah, a lot of people walk in my life. And all the office manager I had, they all left. They all left, and I don't know why. And other people left my life too. But the ones that stayed are the ones that I love. I don't know why. I mean, this is not a hard job. It is a lot of work, but it's not a hard job. And they didn't want to work with somebody with a disability. I know they didn't. Now two people-- Nancy, and the one before her, they were great. It's the ones before them. LEAH GREEN: Yeah, it sounds-- CINDY BENTLEY: And they were in for the money. I know when somebody is in for the money. No, you got to do it to work. The money, it's why you're working. We know you need money to pay for things. But you see, this is a easy job. It's working with advocates. I say it's easy and it's not. But all we want is respect and the love. That's all we want. And that's all I want is to respect and love. I didn't get a lot of love when I was younger. Now I'm getting love. And it's hard for me sometimes to get the love because I haven't gotten a lot of love when I was-- so it's nice to be loved. Really is. I mean, really love, and really love, not just for a couple of days. So sorry. OK, Cindy. LEAH GREEN: No, no, no. This is all about you. I'm just going to say that I think that it sounds like authentic involvement for you, looks like respect and love, genuine caring about each other, and-- CINDY BENTLEY: I give her the respect and she gives me respect, and she's OK. LEAH GREEN: --That authentic involvement isn't just a one off conversation. It's continued presence in your life. CINDY BENTLEY: Yeah, absolutely right. You got that right. LEAH GREEN: Well, we've come to the end of our questions. CINDY BENTLEY: Good. I hope I did a good job. LEAH GREEN: You did great. We do have a question from the audience. CINDY BENTLEY: Yes, ma'am. LEAH GREEN: Susan asked, "what is the name of your book?" And I was just about to look at. CINDY BENTLEY: It's Spirit of a Champion. I was running back in, I think, 2000. You can get it on Amazon, or I might have Nancy just come over here a minute because she knows where you can get it. Amazon had about five a week-- we just ordered. We ordered another company. SPEAKER 1: You can get it through the Wisconsin. CINDY BENTLEY: You can get it from the Wisconsin Historical Society, and that's where it was rotting-- and I tell you a little story about Wisconsin. The story, though, is usually the people were deceased, like Curly Lambeau and that. But I was the first one they wrote, one on me as a live person. And then if you ever a league of our own, they're all live too. And there's some more. So yeah, it's a good thing and they still support me. All I have to do is when I need the book, they will rewrite them for me. So that's good. Yeah. LEAH GREEN: Thanks, Cindy. I put a link in the chat to how you can purchase them from the Wisconsin Historical Society. You can also purchase them from Amazon. Just open call for-- oh, we'll pause here. [LAUGHTER] Open call for any other questions for Cindy. And I just thought maybe while we're waiting to see if there's any other questions coming in for you, you want to maybe tell us a little bit about Dory, your cat? CINDY BENTLEY: Oh, Dory, is a sweet darling little baby kitty. She has her moments. Trust me, like today. She was being a little naughty. She has her moments, where she likes to play with, and then she'll like to-- it doesn't hurt, but she likes to bite once in a great while. But she's a good kid. She's the spoiledest probably a cat in Milwaukee. She had plenty of food, plenty of treats, and she's the love, she is definitely caring when she knows if I'm tired or sad, she comes right up. So my cat's been a very, very got somebody to take care of besides myself. And she's a great kitty. And she's going to be in the vet. We put Dory in the video of my 40th anniversary. Wasn't that easy, but we got it done. She was over in Nancy's house, and of course, two dogs and she just did this little tiny hiss. But otherwise, she was calm the rest of the time. She wanted to probably tell the dog that she did not want to be bothered with the dog. So there you go. Yeah. LEAH GREEN: I do believe she even received an Easter basket this year? CINDY BENTLEY: Yeah. She got an Easter basket. Every year she gets Christmas presents. She had a lot of Easter eggs with treats in it and Easter toys. Now I have to go sort out some of them, they're going to the no kill because she's got too many. We have to share. LEAH GREEN: Good call. Checking in with Activating Change staff, is there any other questions I missed that came in that I didn't see? SANDRA HARRELL: This is Sandra. I don't see any other questions in either the chat or the Q&A. We are seeing in the chat a lot of accolades, Cindy saying great job, this was a great conversation, and thanking you for sharing your diverse experiences. The participant is saying it matters, it's important, and I wish so many could hear about this. You did a wonderful job, and we all appreciate your efforts to advocate for so many. And another person is saying this was wonderful. Thank you so much, Cindy. And this person is saying that they learned so much. LEAH GREEN: Thank you, Sandra. CINDY BENTLEY: They're so nice. That is so great. I'm not good at compliments, but thank you. I'm getting better with that. LEAH GREEN: You're doing great. CINDY BENTLEY: Thank you. Let's do my best every day. LEAH GREEN: Well, we've reached the end of our webinar. CINDY BENTLEY: You were going to stay on for a second. LEAH GREEN: I'm going to stay on. No worries. Sandra, is there any wrap up we need to do for this webinar? Because my mind is blanking on if I was supposed to do that. SANDRA HARRELL: This is Sandra. I just want to say, Cindy, thank you so, so much. CINDY BENTLEY: You're welcome. SANDRA HARRELL: Every time I get to hear from you, I learn a little bit more and find myself a little bit more in awe. So thank you for doing this with us today. CINDY BENTLEY: You're welcome. My pleasure. SANDRA HARRELL: Our next webinar, which is scheduled for May 28. May 28, remind me of the topic, Leah? LEAH GREEN: Frederika Theus-- Dr. Frederika Theus is coming to present on the neurobiology of trauma for folks with intellectual disabilities. SANDRA HARRELL: So please, join us. We'll be getting advertisements about that out shortly at the beginning of May. So thank you so much, everyone. Have a great rest of your Sexual Assault Awareness Month. And because Cindy and Leah want to stay in this room and chat, we would-- CINDY BENTLEY: Yeah, I just have to chat with her for a second. SANDRA HARRELL: We just ask that people go ahead and if you don't mind. Not you, Cindy and Leah, but just the people in the session. CINDY BENTLEY: OK. And thank you to the people that do the sign language. Thank you so much too. SANDRA HARRELL: This is Sandra. I don't know if I'm able to make you-- Tere, can you please make Leah the host so that everyone can leave and her and Cindy can do their-- CINDY BENTLEY: Yeah, it's nothing--