1 Disability Culture and Awareness. Presented by Shayn Anderson, Michael Beers, Emily Holmes, Zach Koble, Stacey Milbern, Alicia Payne and Daman Wandke. PETER: Hi, and welcome to tonight's teleconference entitled Disability Culture and Awareness. My name is Peter Squire and I am a member of the National Youth Leadership Network. I'll be your moderator for tonight and I would like to take a brief moment to tell you a little bit about the call. The National Youth Leadership Network is conducting this teleconference with support from the Independent Living Research Utilization or ILRU. This is scheduled to be an hour and thirty minutes long teleconference. During the first hour, the speakers will answer questions around the topic of disability culture and awareness from the perspective of our panelists. The last 30 minutes will be to ask questions. Once the speakers have answered all the chosen questions, the telephone lines will be opened and it will give you a chance to ask the speakers a question. For those of you joining on the web, you can send your question to Alicia Payne at college_ lady_ok@yahoo.com at any time during the call. When we have finished the first section of the call, the line will be open to our listeners to ask any questions that they have on the topic. 2 The conference system we are using this evening allows the audience to freely ask questions without any action from the operator. Because of this, we ask you, the audience, to be courteous of other listeners and take turns when asking questions. As moderator, what I'll be doing when that open period occurs is I will be opening up and asking for the names of individuals that would like to ask a question. If you could please state your first name and last name, I will write down that name and go through until all the names have been entered. At which point I will ask you to mute yourself by hitting the pound button and then I will call upon you by name. To unmute yourself, you can just hit the pound button again. Again, that will be during the open session for questions at the end for the last 30 minutes of the call. But for now, let's get going. Today we are joined by Shayn Anderson, Zach Koble, Emily Holmes, John Kemp, Stacey Milbern, and Daman Wandke as our guest speakers. I'd like to take this opportunity to ask each speaker to take a minute to briefly introduce themselves. Shayn. SHAYN: Thank you, Peter. My name is Shayn Anderson and I'm from California and I work for Diversity Inclusion, which is a training and consultant firm. We do all kinds of keynote addresses and training around the areas of disability and diversity work. PETER: Thank you, Shayn, great to have you with us tonight. Zach Koble. ZACH: Hello everyone. I'm currently a law student at Washburn University and I work as the vice-president of our Youth Empowerment Academy which runs our Youth Leadership Forum here in Kansas. 3 PETER: Great. Thanks for joining us. Emily Holmes. EMILY: Hi, this is Emily Holmes and I am 25 years old. I just graduated from Salem, Oregon. I just graduated from Western Oregon University with my bachelor of arts in history and I studied disability history and culture and I also work in diversity. I did my history undergrad thesis on some areas of disability history and that's what I'm passionate about and I want to go to work in public history educating people on disability history and culture. PETER: Thanks, Emily. Thanks for being with us tonight. Now John Kemp. JOHN: Hi there, can you hear me okay? PETER: Yes. JOHN: This is John Kemp. I'm an attorney in private practice in Washington, D. C. I've lived here for 17 years and I have been very involved in the formation and hopefully the substance of the American Association of People with Disabilities and I'm a graduate of Washburn University School of Law in Kansas as well and really glad to be with you all today on this topic. PETER: Wonderful. Thanks for being here, John. Stacey Milbern. STACEY: Hello everybody. My name is Stacey Milbern and I'm from Fayetteville, North Carolina. I serve as vice-president of the National Youth Leadership Network and I recently worked with young people in my state to pass a bill about disability history and awareness. PETER: Welcome. Thanks for being here, Stacey. And lastly, Daman Wandke. 4 DAMAN: Hi, my name is Daman Wandke and I'm a college freshman. I am the program coordinator of a disability awareness project and the president of students with disabilities awareness club on my college campus. PETER: Great. It's wonderful to have all of you here with us this evening. Participants, I want you to please remember that you will not be able to ask questions until the end of the speaker session. So please try to remember your questions. Write it down or if you have somebody with you, a loved one, make sure to tell them and keep it until the end. We are now ready to begin. So we're going to begin by asking the speakers some chosen questions. Each speaker will have about three minutes to discuss his or her answers. So let's go ahead and get started. The first question is for John and Shayn and what we wanted to know is what is disability culture to you? JOHN: Shayn, go right ahead. SHAYN: Disability culture to me is about celebrating our difference as people with disabilities. But at the same time it's also about celebrating and emphasizing those things that bind us together as a group. And in an article I just wrote I dedicated a whole chapter on disability culture. In the past, many of us in the disability community only identify with our particular group of a certain diagnosis, whether it's blind, deaf, autistic and so on. But I think we need to start to see things from a broader lens. We need to sit back and see the power that is right before us. We need to look to commonalities that we share as people 5 with disabilities instead of the differences that -- instead of the differences that break us together into different factions. If we look at our commonality, I believe we can accomplish so much more. If we agree on one thing, it's that we have a collective history of oppression and societal limitations that have long confined us and kept us from maximizing our collective power. Perhaps more than any other group of people, individuals with disabilities have the ability to adapt to different situations and to different circumstances. I consider there to be some core values of disability culture that I'd like to share with the group. The first one is a heightened acceptance of others and differences. The second one is our ability to work together and rely on each other as a part of our daily lives. And then the last one I just wanted to share a little bit about is -- and this is a big one for me -- is finding humor in things. I think that humor is a big part of the disability culture. I mean, if we can't laugh or can't find humor in things, I just really believe that life can get really boring and sad. I think that we all have a commonality of looking at things from a very humorous perspective. Many of us also today are becoming more and more people that are proud of our disabilities. Many of us are still in the stages of denial and shame, but for me, disability culture is all about embracing our history and the past and moving from a place of shame to a place of pride. I think again we're celebrating our differences, but we're also celebrating those things that are common amongst all people with disabilities. PETER: Thank you, Shayn. John? 6 JOHN: Gosh, that's an outstanding list there and a wonderful perspective to have. It's really about all of us with disabilities that we're taking -- that we're worthy of taking our rightful place in society. We cannot ever apologize for having disabilities. It is a natural phenomenon in our lives and in everyone's life. And we should be proud of who we are and accept our identity. 85 percent of people with disabilities acquired their disability after birth and I'm one of those 15 percenters that started my life with my disability. I know no other identity and I feel very proud of the disability that I have and how it informs me in the way I live my life. So there is an awful lot of really great things that you've just said, Shayn. It's not simply a shared experience of oppression. I think many of us feel oppressed sometimes by the insensitivities of others, but there are people who really dislike and even -- I might even say hate people disabilities and some people with different types of disabilities. And so we have to find our own identities and to respect ourselves and to look for other aspects in our lives like the core values that Shayn was just mentioning. I also would add on things like a tolerance for lack of resolution in our lives, a sophisticated future orientation being able to constantly -- what do we do when we travel and head out the door every day? We've got to have our stuff within reach and make plans. We make excellent planners as we go about our daily lives and one that's most important to me is our ability to read others' attitudes and conflicts so that we can understand where people are coming from and to some extent help them adjust to the differences that they see. But I don't go very far down that road. 7 I really try to make people deal with me and address me with my disability and I'm very proud of who I am as a person with a disability and I'm probably one of the older people on this call and I know a lot of people in my generation are really proud of who they are as people with disabilities. PETER: Great. Thank you both, guys, for a great kick off. I just wanted to remind the participants if you're listening over the phone, to please mute yourself so that we can filter out any background noise. To mute yourself, simply press the pound key and then when we go to the end of the call, you'll be able to unmute by hitting the pound again. So we can all make sure to hear the speakers clearly, hit the pound key so that you can mute yourself and prevent us from the background noise. Thank you. The next question is for Stacey and Michael and we'll have Stacey go first. Why is it important to establish a culture for people with disabilities? STACEY: Okay, well I think culture kind of naturally happens although it's important to us to really continue it and build it, but I think it's very necessary that we focus on community building first because one of the biggest barriers people have, especially young people, are with identity and kind of just accepting their disability. So when they are able to connect with the larger community they can find strength and see the power in that. And I think also there are a lot of attacks on our community. For example, the story of Katy Thorpe in the United Kingdom this week who is a 15-year-old girl with CP and is about to have her uterus removed by her parents so that she's easier to take care of. So it's important that we 8 come together as a community and really -- so we can have our power that way, kind of unite in numbers. PETER: Okay, Stacey, this is Peter. I was wondering if you have any way or ideas about how we can go about establishing that culture? STACEY: I think honestly a big thing is what a lot of people on the teleconference are already doing is talking about culture with young people and then making a constant effort to really promote it. For example, my E-mail address I chose is consciously crip and it doesn't mean that I'm like, okay, I'm being a conscious little disabled person but rather I make an effort to really promote that part of my identity. PETER: Has Michael Beers been able to get on? MICHAEL: Yes, I am. PETER: Did you want to give a quick bio of your background and then also please answer about why it's important to have established culture for people with disabilities. MICHAEL: Absolutely. Thanks, Peter. Again I'd like to apologize for being late. My name is Michael Beers, I'm from Montana. I work as a peer advocate at an independent living center as well as with our state Youth Leadership Forum. When I'm not doing that I'm also a stand up comic. Yeah, I think it's absolutely important for us to have an established culture for a lot of reasons that have been named already. Because having a culture gives you something to be proud of. It gives you that identity. As a speaker in Minnesota last year talking about history and social movements and he said (inaudible). And it's absolutely all right because 9 if you don't know your history and culture, you don't know those things that you have in common and that shared history of both going back and having a culture. It gives us an opportunity to share those experiences and celebrate. I think that's one thing we never do quite enough is celebrate how far we've come from where we were once and those events and those successes that we've shared as a community across the disability community. So I think it's very, very important to have that culture and sense of self and pride in who we are as persons with disabilities. PETER: Great. Thank you very much, Stacey and Michael. So next we're going to turn to Shayn and Emily. And the question that we have for you -- and Emily if you could go first -- is what exactly represents disability culture and what can we do to preserve it? EMILY: You want me to go first? PETER: Yes. EMILY: I couldn't exactly hear what you said there. So to answer the question what exactly represents disability culture? Well, I feel that there are a lot of things that represent disability culture and they are the same kinds of things that represent any culture. First off, holidays and celebrations. For many people with disabilities, the month of October, Disability Awareness Month, is very important. The month of April which is the Section 504 sit-in month is very important. July 26th, which is when the ADA was signed is very important and many people with disabilities treat those like holidays. Cultures have a language and I'll be honest with you, I really do think that the disability culture has a language, and that is acronyms. 10 And so those of you who aren't sure what that is, like AAPD stands for American Association of People with Disabilities and I have known people with disabilities who can literally make an entire sentence out of just disability acronyms. It almost sounds like when you talk to people with disabilities like they are talking in another language. You know, our culture, we have our heros like Justin Dart and Evan Kemp and Judy Human and we have the people we admire. People with disabilities have a style of artwork and a style of doings things, a type of dance. And then the big thing I'd say is that, you know, what represents our culture is people coming together and being able to relate to each other and understand each other in ways that no one else can understand, even our own family members. And an example of that is disability humor. There are times when I'll tell a joke and the only people -- about disability and the only people that will understand it are other disabled people. You know, and then finally our history defines our culture and represents our culture. And I'm not just staying that because I'm a disabilities grant, I really feel that is the foundation. And the second part, what can we do to preserve it? I feel that right now preserving the culture is huge. And I'm saying this because I feel that it is starting to disintegrate. First off, people with disabilities coming together, whether it's at a large state or national conference or whether it's just the people in your community or neighborhood that you know are disabled. The big thing when it comes to preserving disability culture is learning the history. And so 11 many people with disabilities out there, especially the youth, do not know their history. And I have found that the history that they do know is primarily 1980 and afterwards. And that history is very important, but I feel that so much of the other history is being ignored. And learning disability history -- all of it -- is so -- I mean going back to the early 1900's and beyond, all of that is so important. And the reason that this is essential is because youth especially today, because they don't know their own history, they are doing things that are causing the disability culture to disintegrate quickly. And first off, I feel that the disability -- to preserve the culture, the disability community needs to really start working together for goals instead of working for their own disorders and Shayn touched on this earlier, and that historically people with disabilities were more about issues involved with their own disorders and the truth is strength comes in numbers. And if you look back, you know -- and Pat Wright has said this, in the 1970's with the Section 504 sit-ins, that was the first time that people with all kinds of different disabilities came together to work for a common cause and they suddenly realized that they had a lot of things in common with each other. And that there were some things they had to work together for to be able to be successful. And I feel -- I'm sorry, Pete? Am I going too long? PETER: Yes, your time is over. It's all good stuff. We want to make sure to give everybody a chance. EMILY: Let me finish this last thought and we can move on. And anybody else who wants to know what else I had to say can contact me later. 12 I was trying to get through it as quickly. PETER: That's fine. If you do hear something interesting, information is up on the web, but go ahead and finish. EMILY: The last thing I was going to say is that -- no, I think that was the last thing I was going to say. One of the things to preserving disability culture is to make sure that we're willing to work -- different disability groups are willing to work with other disability groups for their own causes and for causes that affect everyone. PETER: Great. Shayn. SHAYN: Everything Emily said is great and you can hear the passion. That's another thing that we share as a commonality amongst all people with disabilities is that passion to educate and that passion to make people aware of disability. You know, Emily touched on it, but I think one of the biggest things we can do with that disability history is really push for strong commitment to have disability studies come into mainstream academia. I really think that's very important. Another thing that I think we can do is to make sure that we all support the artistic expression of the disability experience, whether that's through painting, sculpture, literature, poetry, music, theatre, dance. I think learning more about those things and learning more about our history can only do things to help to preserve it and to teach others. I think within other cultures they may have somewhat of an advantage just because they passed things down generationally, whereas I think with disabilities we're more inclined to pass it peer to peer, and I think that 13 the statewide groups have done a great job of promoting history and culture and I know we're going to talk more about disability pride. One of the biggest things for me that we can do to preserve is to really change our mindset from the attitude of feeling fortunate to be included, to becoming empowered in the fact that we belong as a culture. We need to celebrate our culture. We need to embrace it and we need to never apologize for it. And that's something I would add as we look to how we can preserve our disability culture. PETER: Great. Thank you both. Again, just a reminder, if you can, please make sure to mute your phone by hitting the pound sign. The next question we have is for Shayn and John. What we want to know is how do you see disability pride playing a role in the future of the disability community? And since the last question Shayn went first, John, I was wondering if you'd take it for us. JOHN: I sure will. I'm a little worried like Emily is about the issue of the future of the disability movement if we don't nurture an identity and a positive identity with our own disabilities. I'm concerned that schools are so much about -- the public school systems are so much about assimilating kids into the school system that they don't take the time to celebrate disability as a cultural phenomenon and hopefully we'll see more and more of that in the future, but we are right now not seeing that and in fact schools are going the other way. Kids with disabilities are expected to pass and assimilate and that does not necessarily nurture a pride. I come from the other generation, the older generation of the Susan 14 Daniels and Judy Human and Ed Roberts and Lex Frieden and Mark Bristow and many of us did not have a long history to go on as we were growing up. We only knew very few people and most of them were built around our disability types based on the service models that existed. So we have come together through the independent living movement and really tried to find a cross-disability pride and power and that's part of the purposes of AAPD and other initialed organizations, but the future of the disability movement lies in your hands and it is important that we nurture the pride and we all accept the pride that we should have in who we are as people with disabilities. PETER: Terrific. Shayn? SHAYN: Those are really great sentiments. The thing I would add is that we finally as people with disabilities started to reject society's held images for us. I mean, like John said, we've been taught to assimilate. I have to say and fess up that probably ten years ago or eleven years ago when I first started getting involved in California was the first time I acknowledged I had a disability. I was always taught that the more you could fit in like John said, the more you can assimilate, the better off it was. I always thought of people with disabilities as other people. That wasn't me. And then I got involved in the California YLF and haven't looked back since. It's become a passion, but I think again we just really have to look towards how we define ourselves. And for me, disability is something I would never ever take out of what goes into who Shayn is and I think we need to really spread that word and spread that passion around on disability. 15 I think that disability pride is one of the biggest tools we have within disability culture and within disability history. I think it's so important that we embrace disability pride, that we leverage it. That we use it. We have that common experience. We have that commonality. We just need to kind of break free and really kind of transcend. I really believe if we're going to continue the movement, if we're going to continue to, you know, affect the employment situation which we haven't been as good in the past at doing, I think we really have to start with selling disability as an asset and not a liability. I think that as we go in to an employer, we need to talk about our disability and what kind of perspective that brings, what kind of good things that brings to a potential employer. I think that in the past too many people have tried to hide it. They haven't wanted to mention it and I think it's something that we in some way need to make that a part of our skill set. JOHN: Peter, this is John. Can I add a comment on to Shayn's good thought there. We're not exercising the power that we have and that is in terms of political and economic power and we will have greater pride, I think, when we really come together and assert ourselves and act with a collective voice. Stacey and I had the chance to get to know each other this summer in Washington. And I think she taught me a lot about the use of power in an appropriate way but that will build on pride for all of us. PETER: Great. Terrific responses, guys. We all -- we've heard a lot about the disability pride and the role in the community. Next is Zach and Michael. When did you become first involved in the disability 16 community? Zach, you want to kick us off? ZACH: Yeah, I first became involved in the disability -- this is Zach. I first became involved in the disability community when I was just before my senior year of high school. I went to our Youth Leadership Forum in Kansas, which is a five day event for students with disabilities to learn about their history, services and advocacy that they can hook up to in Kansas. And besides just the knowledge I gained, I felt like I really started to connect with people on a deep level. Before then, I only knew people with physical disabilities as friends and not people with other types of disabilities. So when I was in high school, I was very kind of separate from people with cognitive disabilities or learning disabilities, but after YLF I was able to make many friends with various types of disabilities and realize that if we came together and exercised our collective voices and talked about stuff and did advocacy together that we could effect change, that we could be powerful. And that was just amazing to me. And it still is every time I see it at a conference, at an action. Just a power of the disability community amazes me. So I think it's always a process to how people get involved with the disability community. Some people get involved little by little, and some people just kind of find their activity and jump right in. But whatever way you get involved, the important thing is that we're all one community and we're all working to help each other. PETER: Thank you. Michael? MICHAEL: Oh, thanks. Like Zach, I first became involved in the disability community with my leadership forum. I attended as a delegate 17 after my senior year so I had already graduated high school and I went to the Montana Youth Leadership Forum. And it really opened my eyes to the fact that there was a disability community and a culture and a history. I had no idea. I had made it through -- I was 19 at the time and I had made it to that point in my life not knowing anything about that history or culture. I didn't know -- if you asked me what the ADA was the day before I showed up at YLF I would have told you it was the American Dental Association. And it's insane because the ADA and IDEA and 504 and you know all the disability leaders and Judy Human and Justin Dart, they have laid the groundwork for me to achieve and be where I was at that time and I had no idea who they were. And aside from learning about all that, it gave me role models and people I can look up to and identify with. I think that's a big reason why I believe aside from YLF we need more exposure and be reaching more students with disabilities in high school and even before then because knowing your history and culture gives you people to relate to and look up to and say they did it and I can, too, and I think the way history -- mainstream history curriculums right now are -- persons with disabilities don't necessarily have those people they can relate to. And there are those people in the history that we can relate to, but the fact that they were persons with disabilities is not celebrated; but it really opened my eyes and gave me an incredible sense of pride and gave me the motivation to learn more and instilled kind of a responsibility to go ahead and do my part in teaching and passing on that history and culture to those people that haven't been educated. And since then, I got involved -- from that I got involved with 18 independent living and NYLN and other organizations that have continued to build upon that education and one of the advantages I believe we do have in that we're relatively young is that a lot of those people that laid the ground work to establish the ADA and those ground breaking pieces of legislation are still with us and are around at our conferences and things like that. And we can learn from them. The people that stood with Ed Roberts and Judy Human and at the 504 sit-ins are still around and we can gain from their knowledge and experience. So we can fight with them today and take the torch when our time comes. So to make a very long answer out of a short question. PETER: No, well said, Michael, both of you. Thanks. The next question is for Stacey and Emily. It's clear that both of you in our conversations that you both talk a lot about -- speak very passionately about disability pride as well as power. I was wondering why are you proud to be -- to have or be a person with a disability? Stacey, you want to take it first? >> STACY: Sure, before I start I know there have been a lot of concerns over the fact that we've used the word disabled in this question and I just wanted to say that I really kind of really love the word disabled because to me it's a cultural identity and it has nothing to do with saying you can't do this or you can't -- but it's more of identifying yourself with a community versus as an individual. Regarding disability pride, I think it's just kind of who we are, or a big part of who we are in that once you learn about the disability community and the history, it's just kind of a natural way that you look at 19 the world. And so actually that's kind of my favorite part about the community is talking about disability pride and the culture fest and the film festivals and the pride parades. Emily, sorry. EMILY: No, that's all right. For me, when it comes to looking at pride, it's not -- it's not -- I'm not proud to be disabled when it comes to like I'm being proud of an accomplishment. I'm proud -- I'm proud of who I am and I am a person who first identifies as disabled. We all identify differently and you know there are all things in our life that allow us to be who we are and those things are usually the things we identify with first or more often, and disability -- my life has been centered around it. And my whole personality, who I am, what I do, you know, is because I'm disabled. And since disability is so much of who I am and since that -- since I identify with that so strongly and since I am proud of who I am and I'm not ashamed of who I am, that's how I can say that I'm proud to be disabled because so much of who I am is all about disability. You know, and one way of looking at it is saying, I'm Emily. I'm five ten. I have brown hair and blue eyes and I'm a history major. That's what defines -- that's the main thing that defines Emily, and I'm proud to be who I am and that is someone who is disabled. So thank you. PETER: Thank you. At this time I'd like to inform you that it's getting close to the time for you, the participants, to ask your questions. So if you are joining by the phone, please have your questions ready and for those of you who are joining on the web, please E-mail your questions to Alicia at college_lady_ok@yahoo.com. Again, this is just a friendly 20 reminder that if you have just joined or you've been on the phone, please mute yourself because this is an open phone call. So please mute yourself to prevent any background noise that may be going on where you're located from coming through the teleconference to make sure that we can clearly hear the speakers as they talk or present over the call. Thank you very much. The next question though is for Zach and Emily. And what we're curious about is how has your specific disability impacted your interest in the disability community? Zach? ZACH: I would say that my specific disability really hasn't impacted my interest in the disability community that much by itself. Like Stacey and others, I identify as a disabled person culturally and politically first and my physical impairment is secondary to that disability. So I would say that just my experience, my social experience as a disabled person has been what really affects my interest in the disability community. Just the common experiences we share from the everyday look that you get going down the street going what is he or she doing out today? Or, you know, the person who tries to pat you on the head or open the door for you and thinks you're helpless or just disability humor that we've all talked about. I think those are kind of what I see as common experiences and what has really interested me in the disability community as a social movement, as an identity group and as my people. PETER: Great. Emily? EMILY: Can you hear me? Okay. I wasn't sure how many times I 21 had muted it. Okay, so for me, my specific disability -- actually I have multiple disorders -- have impacted my interest in the disability community. First off, because the primary disorder that I have is Tourette's Syndrome and I have found that 99 percent of the time I am the only person with my disorder at the conferences or involved in the advocacy or involved with the forums or involved in the research. And I never see anyone else with my disability. And so I have wanted to get more involved in the community, one, to try and search out other people with my disorder, but also to educate people about my disorder. I am also -- I'm a person who my Tourette's specifically is -- sometimes it's apparent and sometimes it's hidden and sometimes it's physical and sometimes it's hidden. And then I have other disorders that are sometimes apparent and sometimes they are not. And I have found that often because I have disorders that are -- they are different in the fact that sometimes they are there and sometimes they are not there, and so just wanting to get move involved in the disability community to educate people about my disorders and you know to allow them to be familiar with them, and I have met many people with disabilities after they've learned about my disorder. And they go, oh, you know, maybe I think I know somebody who does that kind of thing. One of the big reasons that I -- over the years that I have really wanted to get involved with the disability community because of my disorders is that the five disorders that I have, they are all -- there is a real range. There is physical and hidden. There is mental illness, 22 there is learning disability, there is processing disorder and all these different things and because I have such a wide range of disabilities, it allows me to identify with lots of different people and it even more than that, it allows lots of different people to identify with me and to use me as a mentor and to use me as someone who's been there and because I have such a wide range of disabilities I understand a wide range of disorders and I've met people who have like disability A. and they just don't understand people with disability B. And people with disability B. don't just get people with disability A. Guess what -- I've got disability A., B. and C. and D. and E. and I say I can explain it and I can make it make sense because I've got all those disorders. And I've really been able to educate people on why people with that disability do that and how it's different from theirs because I've got both of them. So that is how my specific disabilities have impacted my interest in the disability community. PETER: Great. Thank you so much. The next question that we have up is for Daman and Stacey. And Daman, if you'd kick us off. How does your identity as a disabled person relate to your other identity? DAMAN: My disability is part of my identity. I only have one identity. I have had my disability since birth and my disability has been my identity and I don't know what it would be like without it. The identity has (inaudible) my disability has contributed to it. I have relied on (inaudible). More people with disabilities, I have over the disability. I only (indiscernible). 23 Disability is natural. As a person with a disability, my disability is a part of my identity. PETER: Thank you, Daman. Stacey? STACEY: I think as my identity as a disabled person evolves, my other identity evolves as well. For example, we talked a lot about a simulation which means trying to pass and fit into the major society or dominant culture and I think when you start realizing and connecting with the disability community you also start learning more about yourself and not -- and you stop denying parts of yourself. So you're better able to identify either with other groups as a person of color, as a queer person, as a woman, and that sort of thing. So it's very much -- identity I think deals a lot with who you are and how you identify with the world. PETER: Great. Thank you, guys. The next question is for Emily and John and this is one that I'm sure everybody wants to know. How is it that someone can become involved in the disability community? Emily? EMILY: Okay, how can someone become involved in the disability community? There are all kinds of ways of getting involved. And first off, I think that a lot of people, especially youth today, and I've met a lot of youth that feel like the only way for them to get involved is to be on the board or to be involved in some huge organization that everybody knows about. And that is very not true. I mean, those things are good ways of getting involved, but there are lots of other small ways that are a lot more local and that's also very important. I'd say check out your local government. Get into the phone book or use good search, if you're going to do a search online, use good search and 24 look for local and state chapters having to do with disabilities, having to do with your disability or disability in general like in Oregon there is the Oregon Tourette's Syndrome chapter and different disability chapters have that or different support groups. There may be a support group in your town or a group of people with all kinds of disabilities that like to get together and have fun. If not, you can always start your own kind of thing. Here in Oregon we have the Oregon -- we used to have the Oregon Disabilities Commission. Hopefully it's going to be starting up again and if you find those those can give you a way of connecting. You know, there really is no wrong way of getting involved, just you have to search out -- and I think that's something that's really hard for a lot of people with disabilities, especially youth. Especially just because youth haven't been involved as much as other people have and especially if youth don't have like the kind of support that they need, but search out for that. Look it up on good search or through your phone book or local government or through your school because there is something out there that you can get connected with and if there isn't anything, then start something yourself. Even if it's just like three or four people with disabilities and people who support them. You know, just start something out because it will -- things grow quickly and word and information spreads quickly. PETER: Thank you. John? JOHN: Yep, can you hear me all right? PETER: Yes. 25 JOHN: Emily is right, and a lot of people think that the board spot is the only place you can start. That is just not true. It's usually a place that you might want to gravitate to or aspire to, or you get drafted onto, but primarily it's about acting, doing and being involved in your life to be able to express yourself, to comment, to be a part of government, to become part of advisory committees, to write the letters when you have to, to appear at hearings to express yourself, all these are ways in which we start to become involved in the disability community. There are many organizations, the independent living movement has got lots of independent living centers around the country. You should join an become a member of the American Association of People with Disabilities. There is an overwhelming amount of information out there on every topic that affects our lives and you really -- if you want to try and master all of that, that's great. I can't begin to master it and I have access to a lot of information every day. I have to pick and choose is it going to be Medicaid, is it going to be employment discrimination, is it going to be disability culture? What is it going to be? But it's all about joining and then fulfilling your role that you commit to as a volunteer, as a board member and accepting service when it comes your way. We really need you all, everyone, to start filling in behind the leadership that is aging and aging up and out and we really need people to step up now. So I hope that you will find it to be a natural phenomenon. One last point is that the general culture out there, the general society desperately needs to understand the disability perspective. And I hope that not everything that you do has to focus strictly around 26 disability organizations and issues. It could be that you belong to a generic organization or part of your community and you add the perspective when it's appropriate to the group that's meeting and inform them about what's going on. So that is contributing mightily to the community's understanding. PETER: Great. Thanks, John. Following up with John's comments about, you know, perspective and adding to the perspective, a lot of times young people wonder what we can do. The next question is for Emily and Zach and it sort of looks at this. It's wondering how we can as youth with disabilities do our part to ensure that disability awareness is spread throughout our community. Zach, do you want to give it a first go? ZACH: Sure, Peter. I think disability awareness itself is kind of misnamed or not named very well. I would actually say that the disability culture itself has spread through our communities. As a college student, I formed a student group on my university campus. And many times we did -- we did disability awareness trainings where people would get to experience what it was like to be disabled for ten minutes or 15 minutes and while that was kind of good in some ways, it was kind of bad in other ways because people would get this idea that living with a disability was hard, was difficult, was something negative. And as a disability community that's definitely not the idea that we want to spread. So I think after going through that experience, I think the best way young people can get involved and spread the message in their communities is to do it in a variety of ways. You know, you can get involved with government organizations or policy 27 groups or disability organizations, but sometimes it's just the matter of talking to people, going to a coffee shop and saying, you know, look here is this issue that I want to work on or can anybody help me? Or calling out a friend who uses bad language to people with disabilities or doing any number of other things. I think that it's all kind of what you're comfortable with. For instance, I'm not one to go about and do protest actions all the time, but I do like reading poetry. So I like to go to poetry readings and express what disability culture means to me. So I think whether it's through art, through music, through poetry or whatever else, I think just putting out the message that disability should be looked at as cultural and not a medical illness or bad thing, that's the best way I know to put out disability culture. PETER: Thank you, Zach. Emily? EMILY: Can you hear me? PETER: Yes. EMILY: I couldn't remember if I pushed the mute button. Zach has a lot of great ideas. When it comes down to it, there really is no -- you know, there is no way that is too small of getting involved and getting it out there. Definitely educating not just people who have disabilities, but people who don't have disabilities in the community about disability history and disability culture and all of that kind of thing, again, emphasizing that there is no position that's too small. Pat Wright once told me that -- I can't remember the exact quote, exactly what she said, if you don't know who she is, look it up. She's a disability rights 28 leader. She told me the person who licks the stamp is just as important as the person who negotiates the law. So get involved there. Just sort of search out different things. You know, you never know what you could find. You know, talk to people who are adults who have disabilities. You know, ask them to be mentors to you. Ask them for ideas. You're never too young to learn. You're never too young to ask for advice from someone who is older. And I think that one of the biggest things when it comes to disability awareness and spreading it throughout the community is -- and I'm going to tell what you drives me absolutely crazy -- it drives me crazy when a person who is disabled gets irritated because somebody doesn't understand their disorder, yet they refuse to educate them on it. As people with disabilities, I feel that to a point we have an obligation to talk about and educate others on our disabilities. I mean, that's one of the best ways of -- if you can talk about disability awareness, talk about disability culture, then you should be able to talk about your own disorder. I mean, people -- we're in a time where people want to learn about disability. People who don't have disabilities want to learn about it. They want to know and they are scared to ask questions. If someone asks you a question politely, don't be offended, just politely answer it. And that is -- I feel that that is really important to just educate people about your disability, about different disabilities because if people out there know, then they're going to be comfortable with it. And it's not going to seem like a different thing. It's just going to seem normal. It's going to seem like what everybody else has, the color of your skin, 29 your hair, your disability. And so that I feel is a really big thing. Talking and educating others about your disability. PETER: Wow. Thank you, Emily. EMILY: You're welcome. PETER: Time is flying by as you sit at home. I hope you've been engaged and enlightened as I have. This will be our final question before we open up with questions from you our listeners. So please make sure that you have those in hand and following this last question, again, I will open it up for you as listeners to state your name so that we can take down the names and we can go through in a very orderly fashion to make sure you each have an opportunity to ask questions of our panelists. But for now, let's finish up with the final question and the final question is going to be for John and Daman. The question is is it important to educate society on disability culture? DAMAN: Okay, well, do we need to recognize our culture because we are an important part of our history. We have overcome so much, but we still have a long way to go. People with disabilities as a minority -- we all have ability and (indiscernible). Disability culture needs to be created by people with disabilities. (in discernible). Young people need to be aware of the movement so they can appreciate it more. PETER: Thank you, Daman. JOHN: I think society benefits greatly from understanding about the existence of a culture of people with disabilities. I think it informs 30 them greatly. They see some parallels. They achieve greater understanding, but I also think that it's more important for people with disabilities to understand about our culture of disability so that we feel worthy in taking our rightful place in society. And this is really about pride and believing in ourselves and that we rightfully can participate and should participate in all aspects of life. PETER: Okay, thank you both, and thank you all to our speakers. This ends the speaker session and now we would like to open it up for participants where you have a chance to ask the speakers questions. The phone lines will now be open. So if you would like to ask a question, please unmute the phone by hitting the pound key and I will come around and ask for your name if you would like to ask a question. Please state your name. If you have a certain speaker that would you like to answer your question, please say who you want to answer the question. Again the speakers for tonight are Shayn Anderson, Michael Beers, Zach Koble, John Kemp, Stacey Milbern and Daman Wandke. We don't have an operator. We have me, the moderator, controlling the questions. To make it easier for me, please make sure that you unmute the thing, state your name, and then I'll gather your names and then mute again and I'll call you in order to make sure that each you have an opportunity to ask your questions. The session participants will last for about half an hour at which point we will conclude. If you have a question, please unmute your phone and state your name. CALLER: Elaine. CALLER: Gabrielle. 31 PETER: Anyone else? CALLER: Jesus. PETER: All right, anyone else? CALLER: Chad. PETER: Okay. Any others? We will also have web questions. So if you wanted to submit a web question as well, please make sure to send that to Alicia at college_lady_ok@yahoo.com and we'll be going back and forth between those. Are there any other individuals that would like to ask a question of the speakers this evening? All right, so we'll go ahead and begin. Please remember to mute your phone as the individuals ask their questions. So first off, Elizabeth. CALLER: It was Elaine. PETER: Sorry, Elaine. CALLER: That's okay. I've been doing disability cultural work now for about 30 years, so what I would like to suggest is that people who want to do disability awareness, there is a resource put out by Ragged Edge Online, Mary Johnson editor, called Disability Awareness: Do It Right. Your all in one how to guide, tips, techniques, and handouts for a successful awareness day and it talks about how to do this without falling into the traps. What I'm concerned about, being on the older side of things here, is there is a lot that has already been lost because people have died. Stuff they've written was never recorded. It has not been published and so I guess my challenge is to the younger people to gather stuff and secure it 32 and to get it published and to distribute it because disability culture needs more distribution. There is lots of it out there, but our distribution system is very poor. Any comments on that? PETER: And I'm guessing this is open for any of the speakers. She didn't state a specific speaker. Thank you for your question and challenge, Elaine. Any of our speakers care to comment on her challenge and question? STACEY: I would like to. This is Stacey. PETER: Go for it. STACEY: I think this is where the Internet gets really exciting. Especially with blogs and websites and podcasts and the Internet is not accessible to everyone yet, but I think particularly with young people it's a good way to build communities. I've recently started blogging and just kind of friendships and relationships and ability to continue communications with other people has just been tremendous. So I hope that our community can tap into that resource more in the future. EMILY: This is Emily. Can you hear me? PETER: Yes. EMILY: I wasn't sure if I muted or not. I would like to say that interviewing people in disability history and in the movement and gathering pieces and doing writing is something that I have been doing for a few years and it's something that I continue -- am continuing to do and it's something that I am working with some other people on. So it is happening and it is something that there are some of us that are aware of 33 it and we feel it is very important and detrimental and needs to happen. However, there are times when I get a little discouraged because there just doesn't seem to be enough. So, Elaine, thank you for the comment about doing that and to anyone out there, this is something that I do. Just last week I was in Washington, D. C. and I was talking with Jo Dart and she was telling me a story about when he donated his hat and boots to the Smithsonian. And when I got home I wrote that story down. And just an idea, if you talk with someone who is a part of disability history or if you hear about a story or you get a piece of -- if you gather some information, you know, write it down. Keep that. Make a copy of it just in case, that kind of thing. Especially if they are stories that you've heard or things that people in the movement have told you because, you know, we don't walk around all the time with pads and papers and pens and stuff like that. If you can just remember it and write it down when you can, you never know when you'll be able to use that information again. So that's all. PETER: Thank you. Would anybody else like to comment? JOHN: This is John Kemp. I would like to just suggest that some day there is going to be on the mall in Washington, D. C. a museum about people with disabilities and hopefully either electronically there and elsewhere we will have the artifacts that's lain is talking about. We'll have the stories. We'll have a repository for the items that mean so much to our movement now and in the future. So I always think about that as a vision. If we don't feel worthy to have that, then we really don't practice disability culture. 34 PETER: Great. Thank you all and thank you for your question and challenge, Elaine. The next individual who has a question is Gabrielle. CALLER: Yes, I was wondering -- I recently moved to Pennsylvania for college and I wanted to get more involved in the disability community, disability organizations in Pennsylvania. And I don't really know of many organizations or communities. If you have some suggestions and organizations or groups in Pennsylvania that work with disability issues, if you could please tell me, to any of the speakers or E-mail me later if you come up with any -- so if you know of any groups or organizations in Pennsylvania, can you either tell me now or please E-mail me later. Thank you. PETER: Would any of the speakers like to comment on Gabrielle's questions? Anyone? ZACH: This is Zach. I don't live in Pennsylvania, nor have I been in Pennsylvania much, but I know there are several organizations just on a statewide basis that every state may have such as the statewide independent living council or developmental disabilities council or other state wite organizations that might help connect you with activism in your area. Also like I don't know about your school, but your disability resources office on your campus might have connections to local community groups or at least a person that might have connections. So that's where I'd start. CALLER: Elaine here. Could I answer that? 35 PETER: We're going to hold off -- well, go ahead, Elaine. CALLER: Well, just for Pennsylvania and Philadelphia is one of the centers of activism. Look up www.adapt.org and you can get local connections to the ADAPT people in Philadelphia and they will be some of the best people you can connect with. PETER: Thank you, Elaine. Any other speakers? Okay, I'm going to provide a quick comment since I have some information as well. There is actually a Pennsylvania Youth Leadership Network that is actually headed up as well by our president of the network, Josey Badger. As well as Zach had mentioned there is a state organization as well for independent living that Paul Fogel is a part of. And if you contact me, Gabrielle, I can send you that information, but there are some resources in Pennsylvania and there will be some more specific resources depending on where you live, but also as Zach mentioned the college campus is another place to get started to get, again, involved and you don't have to be on the board. Again just take small steps. It's always the best place to make a start. Thank you for your question. CALLER: Is your E-mail on the Internet? PETER: Yes, it is. And my E-mail is psquire@gmu.edu. That's psquire@gmu.edu. And if you have any other questions about this call, feel free to contact me. Now we're going to go see if we have any web questions to our very own Ms. Alicia Payne. ALICIA: Can I make a comment to Gabrielle's question? I actually have a contact in Pennsylvania even though it's with the Brain 36 Injury Association. I think I can find some organizations in Pennsylvania through that contact if she would like to E-mail me also. PETER: Okay, Alicia. Did you have any web questions? ALICIA: Yes, I do. I have several. And the first one I'm very happy we got because I'm very much agreeing what this person says. This is from Jessica and she said I'm a little disturbed about the way you posed one of the questions. Are you proud to be disabled? I consider myself to be a person with a disability rather than a disabled person. The difference in wording might be slight but I think significant. I'm more concerned about small number of successes and the -- I'm tired of proving I'm disable for example. Why can't there be a central clearinghouse where document can be forwarded to a central location in a state can get verification from them. It shouldn't be any harder than it is to prove you have a degree from a college or university by simply requesting a transcript be sent to another college. I don't need to take any additional test or get a professor to check me out and see if I still have in my head the material I learned in various classes. Why then do I need multiple documentation from a doctor that I have a disability. And I have a comment on this. PETER: Alicia, can we open it up to the speakers? Do the speakers have any comments regarding the question posed? ZACH: This is Zach. I have a few comments. I understand completely the need for a central clearinghouse or data about what type of services you need or indicating that you're disabled or whatnot, however, I disagree that person first language is really important. 37 I think that as a disabled person that my disability identity is not secondary to my identity as a human being. It's just another part of my identity. I think by indicating that we are disabled people instead of people with disabilities we put ourselves out as a cultural group like black people, like queer people, like women. I think that if you identify as a disabled person and put that identity as a culture, put that identity out as a cultural identity and as a positive image, that people will begin to go, oh, okay, I accept that you're disabled. It may take time. It may take a lot of grief and hard work, but I think that you've just got to keep at it. STACEY: This is Stacey. I agree. I think oftentimes person first language or people first language which is when people say I am a person with a disability or I am a person who uses a wheelchair, that it's just kind of another tactic for nondisabled people to kind of make us feel like we are inferior. Why does disability have to be a bad thing? I think we should focus more on how we feel about yourselves in our own community rather than how other people perceive us; but I can understand where that comes from because we are still oppressed by other people's views. PETER: Would any other speakers like to comment on the question? If not, we'll try to move to make sure we address all the questions this evening. The next person that has a question over the phone was Jesus. Are you there? CALLER: Yes, I'm here. 38 PETER: Great. Go ahead ask your question. CALLER: I have a disability and there is a lot of stigma attached to it. So I just wonder why should I be proud of my disability? PETER: Any of the speakers care to comment on Jesus' question? >>I do. Anyone else want to go first? Okay, well I think disability very much shapes your experiences and so it naturally makes you who you are. You would be a totally different person if you didn't have a disability. So if you love yourself you should love your disability. And I think also for me personally I'm really proud to be disabled because I love disabled people. There is no one who can understand me as much as another person with a disability versus my family or a none disabled person. I think also you should be proud to be disabled because we have a rich, rich history full of great stories of people chaining themselves to buses, you know, taking over government buildings. We have a lot of things to be proud of. It's all kind of tied together and I wish more people knew about it because that's definitely a big problem in our community. PETER: Would anybody else care to comment on the question? SHAYN: This is Shayn. I have a comment. First off, I absolutely understand that there are some disabilities that carry more stigma than others, Jesus, and I just -- the thing I would want to say to your question about why you should be proud of it is because part of what we're trying to do in general society is get people to understand and accept it and I think that part of being proud of your disability is acknowledging it and there is a lot of strength in numbers we talked about 39 and I think that putting it out there and being proud of it can start to change people's minds and attitudes by us all a lining ourselves together and being proud as people with disabilities together. PETER: Okay, thank you, Shayn. And thank you, Jesus, for your question. The other phone participant had a question was Chad. Chad, are you there? CALLER: I am. PETER: Great, go ahead, Chad. CALLER: All right, well first I'd like to say Jesus, never worry about your disability because as I said, it makes you who you are and I was actually disabled by a motorcycle accident and it made me a better person. It allowed me to focus on the person I was. As for my question, it's an open question. And my question is: In the search for disability rights and disability culture and spreading it, have there been any groups that you've found that have been more difficult to accept or that have been less accepting of our culture? Less accepting of our information? EMILY: This is Emily. Can you hear me? PETER: Yes, Emily. EMILY: I couldn't remember how many times I hit the mute button again. I would like to say that yes, there are groups out there that are more -- that have a more difficult time accepting people with disabilities and being okay with that. For me, personally, I have found that religious groups can have a very difficult time and sometimes it's like with Christians sometimes it's 40 specific churches that have a really hard time. Some churches do not. Sometimes it's whole other religions that have a difficult time. Sometimes they have a difficult time because I'm disabled. Sometimes it's my specific disability. To a point it can get really broad. Sometimes it depends on like the organization or the group. It can kind of depend on who is in charge. You may find that that group in one state is not accepting or doesn't want anything to do with it, but you'll find the same group in on another state is. It depends on who is in charge, what area of the country you are in, what the group is all about. But with groups like that, I find that you just have to stay positive, be patient, be persistent, just do your best and don't get too discouraged because if you're not able to make that connection, know that you've made at least a dent and somebody else may come along and be able to make that dent big enough to make a connection. PETER: This is Peter. Just a reminder if you're on the call, make sure that you do hit the pound key to mute and prevent any background noise from coming on so we can hear the speakers. Did anybody else want to respond to Chad's question? SHAYN: Can I just really quickly chime in something. This is Shayn by the way. PETER: Go ahead. SHAYN: I've a whole chapter called disability, the redheaded step child of diversity in my new book, but in my diversity work, I absolutely find that a lot of minority groups don't feel that disability belongs as an equal part in diversity work. 41 So part of it really is being able to educate and to make them aware of what our culture is and how we belong and what kind of oppression we have and what discrimination we suffer because a lot of them -- a lot of minority groups that I've worked in diversity work don't feel like that we have a valued place. So part of it again is education. Part of it is awareness. Part of it is just really talking to them and developing a relationship and getting them to understand that disability does have a place at the table with diversity. PETER: Great. Thank you, Shayn. And thank you for your question, Chad. Alicia, do we have any more web questions? ALICIA: Yes, we do. We have tons of comments and everything. The next one is from (inaudible). And it's a comment, I think it is very important that we all use people first language, especially with the youth leadership audience. I noticed that on the announcement for this webcast, the terminology was outdated in one place. It's very important that we lead by example to teach others about respecting people with disabilities. This may seem like a small issue to some of you, but I think it perpetuates stereotypes we are trying so hard to change. Do any of the speakers have a comment on that? PETER: Alicia, this is Peter. Did anybody else have any follow-up questions for the speakers? I think we answered a question similar to that, but did anybody have any follow up comments they want to restate? Okay, thank you. Alicia, do you have any questions? ALICIA: Yeah, and I'm going through my E-mail to look for them. 42 PETER: While you're looking for them, is there anybody else that is on via the -- that's on the phone that would like to ask questions? If you could please unmute yourself and state your name. ALICIA: Okay, Peter, I found one. PETER: I guess there is no more phone questions. ALICIA: This one is kind of long. Oh, my goodness, I have a whole bunch of questions but I suppose I'll pick one that will get the most discussion going. And a couple of others in case there is time. The first one, for anyone, you say similarities that people with disabilities have like every person is the same. I don't feel similar to people just because of a disability. I get to know people based on personality before disability. I had a person try to become my friend because we both had electric wheelchairs. Mine was a scooter for transportation around campus, but there was nothing beyond that. Do you believe it's okay to use that as a friendship starter? Would you go up to somebody with the same color of eyes as you and say you have brown eyes, too. We have so much in common. PETER: Okay. Thank you, Alicia, and this will have to be our last question. Do speakers have any response to the web person's question? JOHN: Peter, this is John Kemp. I think it's fair to start a conversation in any way that's respectful and dignified and if you find a bridge to another person, it's great to go for it. You know, I wouldn't hold back. I use a scooter and I talk to a lot of scooter users about what kind of scooters they are using and I don't even know them. So it's a bridge to me and I wouldn't hesitate for a second. 43 PETER: Thank you, John. Any other speakers? STACEY: This is Stacey. Does anyone else want to go first? ZACH: This is Zach. I was going to answer the question real quick. I think I agree in some respects with the person who posed the question. Certainly I don't get along with everyone who is disabled that I know, nor do I get along with every person who is from Kansas that I know. But I also think that to say that disability isn't -- shouldn't be used in any sort of way as a conversation starter or a way to make friendships is kind of ludicrous. Like we all experience different -- disability different ways, but I think there are some social aspects of disability which we all experience, whether that be humor or whether that be certain ways people treat us or frustration with getting accommodations. So I think just that type of connection is a good -- can be a good way to make friendships or at least talk to people if you don't know anyone and you want a friend. PETER: Stacey, you had a final comment to make? STACEY: Yes, Adrian Rich who is a feminist writer has this theory called the specialness, and it's the idea that individual people are taught that they are special or they are better than everybody else in the group and the whole -- everybody in the group is thinking that they are special, and better than everybody else. So it's a way to kind of keep communities from organizing and that is a big thing that disabled people face. So until we can see that it's not just, oh, we both use the same kind of wheelchair, that it's more of the common experience we have and the 44 need to really connect around that, we're always going to be oppressed. PETER: Thank you, Stacey. I want to thank all the speakers again tonight, Shayn Anderson, Michael Beers, Zach Koble, Emily Holmes, John Kemp, Stacey Milbern and Daman Wandke. Unfortunately we're coming to the conclusion of this call. I want to let you know that you can always remember and follow up and look at the resources provided by visiting the teleconference web page and looking at the resource materials that are available to you. And please follow up with us through E-mail or other communications. Make sure to visit the National Youth Leadership Network's website, www.nyln.org for other information available as well as, again, the teleconference materials that you participated tonight. We also want to thank very much ILRU for their support and please make sure and schedule in your calendars now to join us in January for our next teleconference and webcast. Thank you all again for joining and have a wonderful night.