Self Advocation Power Hour Episode 1 Transcript: Who We Are

September 18, 2024 | by sau1admin

Transcript

Introduction

Ed Auerbeck: Hello and welcome to another episode of the Self Advocation Power Hour. My name is Ed Auerbeck. I'm here with my co-host, Nancy Havener.

Nancy Havener: Hello.

Ed: This week is actually a, a very special week and I know I probably say that a lot, but it really is. We were able to meet on two different occasions with some long time SAU1 board members and also some staff. So today you guys are gonna be hearing an interview conducted by myself and an associate of ours here at SAU1, Brittney Baron. We basically discuss a little bit of the history of SAU1 but also just how SAU1 has grown in self advocacy and how we hope to grow into the future. This podcast being one of those steps. Without further ado, here's our conversation.

Conversation

Brittney Baron: Also for, this is gonna be used for our introduction for what SAU1 is, what it does. This is going to be the, the kickoff podcast. So this, what we say tonight, not all of it but some of it, is going to be used to get people really excited about SAU1, its mission.

Lori: Nice!

Brittney: So, when Ed asks you the question, show you know, speak up. Really, really show people what SAU1 is all about. And I know that your, no one here is going to have a hard time doing it. We um, I missed you guys so much. I'm happy we're all here.

Ed: But what does self-advocacy mean to you? Go ahead, bud.

Jordan: Self advocate means to me to speak up in this way, and to inspire more people to get involved in SAU1.

Ed: Very good. All right. Okay. Oh, did you have something else? Jordan, I'm sorry.

Jordan: No.

Ed: Okay. So Laura, what does self advocacy mean to you?

Laura: Well, I think the answer was already said. Helping people in their rights. See if they need help, and then go from there.

Ed: Okay.

Lori: It means to me, is we're, we're all we're making a difference in the world today. And trying to make people listen to us and our needs.

Ed: Yes.

Tom: What does self advocacy means to me? What self advocacy means to me is to be able to speak up for yourself and possibly others to be able to voice their concerns on certain topics or important items.

Brittney: Awesome. Alexis you want to go next?

Alexa: Yeah.

Brittney: Alexa, sorry. I don't know why I called you Alexis.

Alexa: It's ok. Doing self advocacy means speaking up for what you need and want in your life.

Ed: Uh, what does SAU1 do?

Brittney: So, in your own words, what does SAU1 do?

Tom: Well, what SAU1 means is that the other self advocates can speak up for themselves because they need to voice their concerns on different matters.

Jordan: SAU1 is a good organization to be part of, meeting other special needs people.

Lori: We um, what we do is like I said, we fight for our rights. Get things changed around here. We make things better.

Ed: Alrighty.

Brittney: Thank you. Laura your hand's up.

Laura: Um, first, we have Power Coaches that do presentations in the community about different topics that are brought to our attention. Or, and then we vote on and we give it to them to work on and do.

Alexa: SAU1 helps people learn how to speak up for themselves and what they want in their life.

Tom: Okay, SAU1 is important because other organizations need to hear from us to hear what we have to say because we are a self advocacy group. We say matters.

Jordan: Um, it helps me to speak up for myself, at my meetings, in everyday life.

Laura: Because it helps when we go out, or the Power Coaches go out, they present and give speeches on people with disabilities' rights and what they are able to do.

Lori: Um, it's important for us, like Laura said to speak up for the disability people and ourselves because if it wasn't for SAU1 who um, who would speak up for the disability and the other people?

Alexa: SAU1's important because people get to hear from the other self advocates and know that their voices matter.

Ed: How has SAU1 helped you live your life, your way?

Tom: With self adovocacy, I mostly deal with autism because that's my specialty because I run an adult autism support group. So I bring, I've been over the last fifteen, sixteen years, I've been bringing in a lot of uh folks who work in the autism world. But here I'm being able to spread my wings and to help others in the disability realm.

Brittney: Thanks for sharing that. That was very powerful.

Laura: Um, I have a learning, learning disability, physical, and health disability, or health illness. And so I like it that I can give my perspective on different issues to help out this community of people with disabilities.

Alexa: SAU1 helps me learn how to become a better leader.

Brittney: Thank you. It does. I, I can agree with that.

Ed: What would you say to a self advocate thinking of joining a Power Event?

Brittney: Tom, you want to start us off?

Tom: I would say you should definitely join a Power Event. This way you'll learn about what SAU does, one does, and how you can get enjoy and get to join the group.

Brittney: Next?

Jordan: Yes, I say I want to piggyback off of Thomas and say that The Board of Directors, like 'lexa and others are perfect in their own way.

Laura: It's, it's good when people go to see the presentations because they can learn about different topics. Or not to be afraid of different subjects that we bring up. So they could talk to us if they want to.

Brittney: Alexa?

Alexa: You, should come to Power Events because you're gonna learn about self advocacy in words that you, words that are more understandable for more people, like the, like the acronyms and stuff. They're gonna peresent it to you in a way that you can understand it.

Brittney: So, we asked, what would you say to a self advocate thinking about joining a Power Event? Now, what would you say to an ally thinking about attending a Power Event? Does...Go ahead, Jordan.

Jordan: Is it someone that we live with?

Brittney: Yes. Alexa, what's an ally?

Alexa: It can be but it can also be peopple from diffrent organizations or maybe a family member or friend who wants to learn things from the point of view of self advocates.

Brittney: Yes. So an ally could be somebody that supports um a self advocate. So an ally would believe that everybody has the right to speak up. They would, an ally would have the same beliefs that self advocates do but they don't identify as a self advocate, or they might too maybe. But for the most part, it would be people who don't identify as self advocates but are supportive of self advocates. So what would you say to an ally who is thinking about joining a Power Event?

Tom: I was just, I would just say yes, go ahead and do that if you're really want to do that.

Brittney: Do you think that there is something that, what do you think an ally could gain by joining a Power Event?

Tom: They could learn a lot. They can learn how to speak...how pep...others speak up for themselves, what's important to the self advocate, what topics are important to the self advocate, how long have they been a self advocate, etc.

Brittney: Thank you for that. Jordan, do you want to go next?

Jordan: Yes. I do agree with Thomas and also add that they can come and join SAU1 too and learn much more about helping these people with disabilities to speak up for theirselves.

Brittney: Thank you. Laura, do you want to go next?

Laura: Um, this is hard. Um, if people are interested in learning about um, the topics and every, what else, they could go to our website and look up what we do. Or reach out or by our mailing list.

Brittney: Mm hmm.

Laura: Read what we, or hear about what we do. And join and go to the activity. It's, it's, if they're interested in it, and they are. There always are interesting topics.

Brittney: Alexa.

Alexa: Allies should come to our events because they're gonna learn about things from the point of view of self advocates and not just friends, family members, or professionals

Jordan: Yes.

Brittney: Okay.

Jordan: They always can talk to one of us, and ask us why we are at SAU1. Give our backstory.

Brittney: Oh I like that. The backstory. That was a good one.

Ed: All right. Okay, I can sense some good stories coming off of this one, I think. what is your proudest member...what is your proudest memory as a board member?

Lori: Hmm.

Brittney: Go ahead, Jordan.

Jordan: Yeah, my friend. I'm happy to be with other people with all over PA as a self advocate. I just started this year.

Brittney: Thank.

Alexa: It's not really a memory but I like the experience of how SAU1 really listens to self advocates and values their opinions and helps them stand up for what they want.

Brittney: Thank you for that. Lori, do you want to share?

Lori: Yes. There was like, a rule 21 or something like that. I was speaking to like a, um god, like not, it's like um the head, gov, gov, the governor about not treating us like robots. And I guess he heard me because he looked like he was in shock. And I'm like, yeah you should be. We're not robots, we're human beings. And I was so proud of myself.

Ed: I love that, Lori.

Brittney: Yeah.

Lori: Yeah.

Brittney: Thank you so much for that.

Lori: You're welcome.

Brittney: Tom, how about you, what's your proudest moment or best moment?

Tom: I would have, I would have to say that I was invited to join SAU1 by a former SAU1 board member. She felt I would fit well in with this group, because I have many years of self advocacy with the, in the world of autism. Plus, I have two different disability awards to my name.

Brittney: You do. You have a lot of accolades.

Ed: Congratulations on that,Thomas, I did not know about the awards.

Tom: Yep.

Ed: Yeah. Great.

Laura: Okay, Um, I, like being part of SAU1. I went, this goes back to the heyday. Um, I went for a different job interview. And I learned about SAU1 later. And I was really interested in it. And I was a presenter back then. And I liked it a lot. And then the board came up, self advocates could join and I really wanted to be a part of that. So I changed positions. And I enjoyed doing it every time.

Brittney: Oh my God Laura, you're gonna make me cry.

Ed: Good. That's great, Laura.

Brittney: Yeah, thank you for that. Lori, I saw your hand raised. Did you want to add more?

Lori: Okay, Tom brought up something that I totally forgot about. When I joined SAU1, my, I got my, five months into SAU1 I got my first [inaudible] and it was carefree. That means I was speaking on my own. I was not scared.

Brittney: Oh, I love hearing that. Thanks for sharing that.

Lori: You're welcome.

Brittney: I think that, um I don't think I know, for me even, I, I have a loud mouth, I know that all of you know that I have a loud mouth. and I don't have a hard time...

Lori: No.

Brittney: I know hard to believe. I don't have a hard time speaking up for other people. If I see something I think is wrong, I say something. But a lot of times when it's me, I get really afraid. I get really afraid to speak up if it's for me because I don't want to be...you know, I don't want people not like me or, you know, I get, I get scared, I get scared how people are gonna treat me because people always haven't been the nicest to me.

Lori: Oh.

Brittney: But since, I may get a little emotional, but since SAU1, I really have such a change in the way that I will speak up for self. So the same way that I loved everybody else and want to speak up for them, watching all you guys speak up all the time and how, you know, passionate everyone is for advocating for themselves. It really, it, it, it inspires me. It makes me feel safe to do that. And, you know, my life is much better after being here and learning how to do that.

Jordan: What about you, Ed?

Brittney: What was that, Jordan?

Jordan: I was saying what about Ed?

Ed: Oh.

Brittney: Oh yeah. What about Ed? Go ahead, Ed, share.

Ed: Yeah, uh, for sure. I would say that my proudest, my proudest memory of working here is just the, I've said this a few other times but, just the uh un, sort of unwavering, unquestioning sort of way that Kaye, when I interviewed I told her that I needed a specific number of hours. And I said I know this it probably isn't gonna work and you're not gonna want to pay me the same as everybody else because I'm working less time and she couldn't have been more welcoming of like, hey you work what you want to work or what you can work, and we'll work it around you. And it's just, it's such such a wonderful thing to hear and I think about that just about every day. And I could not be more thankful for it because I'm so proud to be here in situations like this to be able to talk to you guys and help amplify your voices a little bit more. So I'm just proud to be here and I don't know if that'll ever wear off so um.

Lori: Good. It shouldn't.

Brittney: I have an idea then. Should we ask Ed a couple of the same questions that he asked us? Do you mind if I run?

Lori: Yeah!

Jordan: Yeah.

Brittney: Alright I'm gonna run through. We're gonna put Ed through a speed round of questioning.

Lori: Yeah, so get yourself ready, Edward.

Brittney: Yeah, get yourself ready, Ed.

Ed: All right.

Brittney: So, Ed, what does self advocacy mean to you?

Ed: Self advocacy means to me that everybody is able to share their voice and, and share their opinions. And it's, it's the individual opinion but it's, it's also the fact that all those opinions exist in and are allowed to exist in one big community. So I like the fact that the individual is emphasized but also it, it's trying to move forward with the common good.

Brittney: Thank you for that. Ed, what would you say to an ally that's thinking about getting involved with SAU1?

Ed: Um, I would say that you should get involved not only for the reasons of advocacy but I, I haven't met such a consistent group of genuine people like you guys before and I really feel like, I really feel like that, that whole family mentality exists, and exists and it's palpable. And I really, I really think that a lot of people say it, but it's empty, a lot of other organizations say it but it's, I feel like it comes across as empty words. With this organization I know that it's not. And I would just tell them that you will feel a part of the family within five minutes. You'll feel, you'll feel closer to everybody, and you'll make friends that you'll have for, for a long time. So yeah, that's that, that would be what I would say.

Brittney: Thank you. So we have one more question. This will be the, the big send off. We'll do this one question and then we'll wrap things up. Does that sound good to everyone?

Tom: Yep.

Jordan: Yeah.

Lori: Yeah.

Alexa: Yeah.

Brittney: All right, so we're going to start off with Madam President. We'll have Alexa lead us in this one. How are you, Alexa hoping to help SAU1's mission? How are you hoping to make a difference with SAU1?

Alexa: By leading them towards our mission of helping self advocates learn to speak up for themselves.

Brittney: Thank you for that. Lori. I'm gonna just call on people. We're running, we're running toward the end. This was, this is amazing. I was worried that we weren't gonna have enough to say, but I cannot imagine...

Lori: Yeah really!

Brittney: ...not having...We, we could talk all night.

Lori: Yeah we can!

Brittney: So Lori, how are you hoping to help make a difference with SAU1? How are you hoping to help SAU1's mission?

Lori: Well, my um, I am hoping to help make a difference is I just keep fighting for what I, what I believe in.

Brittney: Yes. Yes.

Lori: Programs or whatever we all need. [Inaudible] mainly ramps in buildings.

Brittney: I love that. I love that you named specifically too that goal there, thank you for sharing that.

Lori: You're welcome.

Brittney: Tom, how are you hoping to make a difference? How are you hoping to help SAU1's mission?

Tom: I may not be a board member but I, I am an advisor to the board. But...

Lori: Yeah, he is.

Tom: I'm hoping to make a difference because I have a long list of achievements in what I do in the autism field and I hope to be able to provide some important information to the rest of the board and hope to make them a better group.

Brittney: Thank you. Ed, what about you?

Ed: um, I, I, I would say again I, I think it just, it comes back to helping, helping you guys amplify your voices. And also, there's a little bit of a, there's a little bit of a selfish, a little bit of selfish reason for me, in the fact that I, I want to learn how to advocate for myself because I, I um, I have been doing it but I've been doing it in a very kind of mannered mild way for a lot of years and seeing the way that you guys are not, and I appreciate this about you very much, you guys aren't shy about sharing your opinions and...

Lori: Right.

Ed: I want to lose that shyness that I have. And being around you will help me do that. So I, I think that's the way that I'm gonna help myself and that'll help the organization. And then, like I said, just amplifying your voices is very important to me so.

Lori: Great.

Brittney: I'll tell you what, SAU1 in one year of, I've been working for over a year here now, but...

Lori: Yeah you did.

Brittney: Yeah. But in the first year that I started working here, I learned what ten years of therapy did not teach me. I learned in one year here what I was working on for ten years. It took one of being around everyone at SA...

Tom: I've only been with SAU1 for just over a year now myself.

Brittney: Yeah, it, it has such a big impact. Jordan, do you want to share? How are you hoping to help SAU1's mission? How do you want to make a difference with SAU1?

Jordan: To inspire other people to speak up for themselves. Knowledge is Power. Use it.

Brittney: Oh, Jordan. Thank you for that. Full body chills. I saw everybody smile there. All right, Laura, this is the last question. And then we're all gonna regroup and say goodbye. So Laura, how do you, how are you hoping to help SAU1's mission? How do you want to make a difference with SAU1?

Laura: See how we can make a difference, [Inaudible]. And we work together, for the, help, the disability community.

Brittney: Thank you for that. So, what does everybody think? I think we did a phenomenal job tonight.

Lori: Yeah.

Alexa: Yeah.

Lori: I did too.

Ed: Hello and welcome back to another wrapped up episode of the Self Advocation Power Hour. I'm here again with my co-host Nancy. Um and I also just want to shout out Brittney Baron an associate here at SAU1 for precipitating great answers, coming up with some great questions during our interview and, and she does a lot of other great work behind the scenes. We are unbelievably wrapping up, I, I believe what will be our first episode of the Self Advocation Power Hour. We, we weren't sure what order we were gonna go in before this, but we have it pretty well nailed down now, and we're so excited to be bringing you SAU1 content and, and the Self Advocation Power Hour is a lead, lead part of that, as far as we're concerned and we hope to bring you many more. So, until next time, remember to keep speaking up and let your voice be heard. Thank you very much.