1 This is a webcast presented by the NYLN, titled Let's Talk About Sexuality! Presenters: Susan Nussbaum, John Lemus, Jillian Kaiser and Amy Litzinger. >> PAT: Hi, and welcome to tonight's teleconference entitled Let's Talk About Sexuality. My name is Pat Hartman and I am a member of the National Youth Leadership Network. I'll be your moderator for tonight. 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 30 minute long teleconference. During the first hour, the speakers will answer questions that were picked concerning issues about sexuality and people with disabilities. The last 30 minutes of the teleconference will be for participants to ask the speakers questions. Once the speakers have answered all the chosen questions, the telephone lines will open giving you a chance to ask the speakers a question. For those of you joining on the web, you can send your questions to Eleanor Canter at eleanor@ncil.org at any time during the call. If you have any technical problems during the call, please contact Eleanor at (703)270-8542. 2 At the end of the speaker's session, you will be given instructions by an ILRU operator on what buttons to press on your telephone to voice your questions. Today we are joined by Amy Litzinger, NYLN governing board member, John Lemus, NYLN member, serves on the NYLN advocacy committee, Jillian Kaiser, NYLN governing board member, Eleanor Canter, NYLN governing board member, chair of the NYLN advocacy committee, and Susan Nussbaum of Access Living of Chicago and the Empowered Fe Fes. Participants, please remember that you will not be able to ask questions until the end of the speaker's session. So please try to remember your questions. >> ELEANOR: Hi, everybody, and welcome to the NYLN teleconference, Let's Talk About Sexuality! My name is Eleanor Canter and I'm proud to announce that we have over 150 young advocates joining us tonight. I'd like to start by talking a little bit about some rules for understanding for this conference. We have a wonderful diversity of topics to talk about, but I know that some may make people uncomfortable. Most importantly, each participant must feel the freedom not to discuss any topic they feel uncomfortable with. And it is also important to remember that everyone on this call has the right to be respected in the space we create here today. The topics we're going to discuss are critical issues, just remember that we're on somewhat new grounds for open conversation and the need is there to be prepared for the unknown. This conference will cover many issues because sexuality is such a broad topic. All people are sexual beings from birth to death, our 3 sexuality includes our bodies, our biological sex, our gender, our gender identity, how we feel about our gender, our sexual orientation, straight, lesbian, gay, bisexual, our values about life, love and the people in our lives and our sexuality also includes attitudes, relationships, self-image, ideals, behaviors and how it influences how we experience the world. >> PAT: We now are ready to begin asking the speakers some chosen questions. All of our speakers will have up to ten minutes to discuss his or her answers to the questions. Now let's begin the speaker's session. We begin our discussion tonight on sexuality and people with disabilities with John Lemus. John has been an advocate for people with developmental disabilities for three years. John works as the coordinator of self-advocacy at The Arc of Spokane County. John is also working on becoming self-employed. He will launch his consulting business in 2010. It will be called Abilities Consulting. He speaks on disability and other types of issues. John puts a big focus on teaching relationships and safe sexuality to the disability community. He uses a rights and risks model for his training. John believes in the value of people with disabilities making their own decisions when it comes to relationships. Please check out John's website for more information. John, could you start tonight by giving us some good tips on dating and relationships? >> JOHN: Sure, Pat. Tips on dating and relationship or when you're first starting to see someone, that gets you to know what you're looking for and know what you want out of a relationship. It's really good if you've known someone for a long time and you're interested in them, maybe 4 ask them out as a way to get off the starting point for a relationship. It's really important to always remember what you want and what you don't want out of a relationship so that you can feel safe in your new relationship. Those are really good tips that I tell all of the people that I work with when it comes to dating relationships. >> PAT: How fast is too fast when it comes to physical intimacy? >> JOHN: Well, that's a great question. Usually people decide this for themselves. It's safe to say that if you would at least want to be with someone as long as you feel comfortable being with them before you engage in physical intimacy. And if they are wanting to engage in that before you're ready, then that's not okay and you should have a safe and honest conversation with your partner or the person that you're interested in and say this is how I feel and this is not what I'm ready for. >> PAT: What can you share with us about what you have learned about guardians and relationships? >> JOHN: Well, this is a sticky topic. I've learned a whole lot in my time at The Arc, and that if you have a guardian, your guardian cannot tell you that you cannot be in a dating relationship unless they feel that you are being taken advantage of or your partner is taking advantage of you. If you want to date and you have someone in mind that you want to date and your guardian is telling you you can't do that, that is not okay, and you need to talk with them about that need that you have to be able to want to date and be with the person that you're interested in. And go from there. Sometimes it's as easy as talking to them. Sometimes it helps asking other family members, maybe brothers or sisters to help you out to 5 get what you want. >> PAT: We will now take this opportunity to take a few questions from our young people in the audience tonight for John. >> ELEANOR: I will now unmute the audience. Hold on. Do you have a question for John tonight? >> CALLER: Is it okay to date somebody younger than you? >> JOHN: That depends on how old you are and how young the person is that you want to date. >> CALLER: Okay. In my situation, I am 22 years old. And I have a guy when I was in high school in Maryland come up to me and he was 17 and I was probably about 19 or 20 when he came up to me. And he asked me did I love him when I first met him? >> JOHN: That sounds like a pretty uncomfortable situation I would not want to be in. So I would say that if the person that you are interested in is asking you those type of questions (inaudible). >> ELEANOR: If anybody hears any background noise, can you mute yourself by pushing the pound key. You can always unmute yourself by pushing the pound key again. >> ELEANOR: No more questions for John? >> CALLER: If you mean somebody on line -- if you meet somebody on line, how can you tell if they have a disability? >> JOHN: I usually wait a bit if I've met someone online and just start chatting with them and if I feel that this is someone that I'm really interested in, I'll just throw it out there and say, you know, this is one of the things that I deal with and if this person is really in to me, then 6 they would, you know, care about me regardless of my disability. But I usually wait until I'm comfortable disclosing that. Does that answer your question? >> CALLER: Thank you. >> ELEANOR: Okay, let's move on to Amy's question. I'm going to mute. >> PAT: Thank you, John. Our next speaker is Amy Litzinger, who will be speaking on the topic of reproductive justice. Amy Litzinger is going to school at Southwestern University. This is in Texas. She is a sophomore. Her majors are English, political science and religion. Going to graduate school is one of her goals. She is a former vice chair of the youth advisory committee for the National Council on Disability. In the past she was the chair of NYLN's mentorship committee. She likes advocacy, transportation and assistive technology. She serves on the state children's policy council in Texas. She also helps with the Youth Leadership Forum. On campus, Amy participates in the theatre for social justice. Last year they worked with high school students. Together they wrote a play about racial issues. Amy also serves on the student Congress and on the faculty affairs committee. Amy, what is reproductive justice and why is it important to young people with disabilities to understand? >> AMY: Reproductive justice is a process in making your reproductive decisions. There are lots of different views and discussions on it, and lots of different reasons why it's important. Some people thought that people with disabilities were unfit to be parents because they thought disability was a little hereditary and it was criminalized for different reasons. And also they thought that different 7 disabilities were signs of mental unfitness. So people with disabilities were often told not to reproduce. They were sterilized or not allowed to raise their children and that's called eugenics. And sterilization is when a person is altered so they can't have children. And that's basically all I have for the first question. >> PAT: Amy, where can young people with disabilities find out more about reproductive justice and the history of our movement? >> AMY: The book (inaudible) is really important and also if you search reproductive justice online, you can find a lot of things. And what's different about the movement now is that now we are having more of a choice of what to do with our bodies and how to make our own sexual decisions. So that's important to know that it is changing. >> PAT: We will now take this opportunity to take a few questions from our young people in the audience tonight for Amy. >> ELEANOR: Do you have anything else to add to that before we go to questions from the audience? >> AMY: No, I think that's fine for me. >> ELEANOR: Okay. I'd just like to remind our audience members to please, if you want to ask a question, turn your computers off and -- I'm going to go ahead and unmute the audience. >> CALLER: I have a question. How do we make (inaudible). >> ELEANOR: Okay, does somebody have a question? Do you have anything to add -- if everybody could please mute their phones by pushing the pound key. Okay, don't forget that at the end of the teleconference tonight 8 you're going to have an opportunity to ask questions again of any of the speakers. So if you have any in mind for John or Amy, just keep them in mind also until the end. Somebody have a question? >> CALLER: I have a question here in Santa Barbara. >> ELEANOR: I'm sorry. I can barely hear you. Please go ahead though. >> CALLER: My question is about reproductive rights. I was wondering what about having the right to terminate. Do we have that right also or not? There is a lot of discussion on that. (inaudible). >> ELEANOR: Everybody, we can't hear the questions at all. So you're all going to have to push mute on your phone if we're going to be able to hear. >> CALLER: Okay, can you hear me? >> ELEANOR: I'm sorry, but we can't move forward until you turn them off. If you could just try the question again. I heard the part about do we have the right to terminate. I'm sorry about that. I had to mute the audience again because we can't hear any questions while people are unmuted and/or have their computer speakers turned on. Amy, did you want to respond to the part of that question that we could hear about termination as a right as well as the right to have children? I know that we're going to cover this a little bit more when we get to my section about safe sex and safety, but is there anything you wanted to add? >> AMY: We do have the right to terminate as well, yes. >> ELEANOR: Okay, we'll cover this a little more later in the 9 teleconference later as well. We'll get back to your question. I'm sorry about that. Okay. Pat, let's move on to Jillian's section. >> PAT: Okay, thank you, Amy. Jillian Kaiser is here tonight to share her thoughts about the gay, lesbian, bisexual, transgender, queer and intersex community and the disability community. Jillian Kaiser is a member of the NYLN governing board. She is 26 years old and lives in Minneapolis, Minnesota. She studies human services. She puts a big focus on working with minority youth groups. Her specialties are youth with disabilities and the GLBT, Gay, Lesbian, Bisexual and Transgender community. Jillian works with inner city youth with disabilities. She puts focus on acceptance and self-advocacy. She has been an activist in these communities since she was 16. She is an openly gay member of the disability community. Because of this, she can help break stereotypes about both communities. She helps create inclusion and acceptance for everyone. Jillian, as a member of both the GLBT and disability communities, what would you most like the disability community to take away from the teleconference -- the GLBT community? >> JILLIAN: I think before we start I want to take a moment to let everyone know that this is what I have to say about the GLBT community and this doesn't necessarily reflect the opinions of the entire NYLN or the entire GLBT community as a whole. I would like to start by covering exactly what GLBT stands for. That's a lot of letters. It does stand for the Gay, Lesbian, Bisexual and Transgender community. Oftentimes it also -- we add on intersex, queer, allied and several other letters. I think what's most important to understand is that for the rest of this I'm 10 going to use the word gay as an umbrella term just to make things simple so we're not going through the whole GLBT. I think what's most important to understand about the GLBT community and what we would most want the community to understand is that being gay is not necessarily a choice as much as being a person with a disability isn't a choice. The process of identifying oneself and coming out as gay can be a stressful and emotional process, but not necessarily a moral decision, rather than a process of understanding oneself and figuring out how this fits in the world around us. I think the most important thing to understand is that it's okay to be gay and really we're just looking for acceptance. >> PAT: What other main issues are affecting people with disabilities who identify as part of the GLBT community? >> JILLIAN: Well, let's be honest, I identified as a GLBT as a youth and that can be a challenge in itself. There are additional issues associated with being GLBT and having a disability. Some of those issues can include much like the reproductive justice we were just talking about, not necessarily having your preference of sexuality respected in the matter that family, friends, support staff or others might not feel that this is a choice that you are able to make for yourself. However, as an individual, and as a self-advocate, it is important that we understand that this is not something someone else can determine for you and you have a right to have your feelings regarding your sexuality respected. Another issue is that the GLBT community is not always the most accessible environment. Unlike our heterosexual counterparts it can be 11 challenging to meet other GLBT people out there. There is a limited number of GLBT sponsored events and venues and many social events do involve the bars and night clubs which don't always meet disability standards. So other challenges such as chemical sensitivity or the lack of an ASL translator and many other issues can make attending such events frustrating or undoable for individuals with disabilities. A big issue that affects individuals that are members of both communities is individuals that identify as GLBT and as a person with disability can experience double the discrimination. One prominent issue is homophobia which is discrimination towards a person based on their sexuality within the medical system including recognition of one's partner or significant other. >> PAT: Jillian, do the GLBT and disability communities have anything in common, shared goals or barriers? >> JILLIAN: Well, I think that as within any community that is considered a social minority, awareness and acceptance are the most common shared goals and that that lack of understanding and awareness can create countless barriers. Like the disability community, the GLBT community is not a mainstream culture, which can sometimes be really hard when trying to find people like you. As things currently stand, the GLBT community is still fighting for full inclusion in society and equal rights. Like the disability community, what we do seek most is acceptance. And I think it's really important that we understand that acceptance does not mean that you have to agree with the lifestyle, but rather it means to be respectful and allow others to live as 12 they are. Currently, the GLBT community is facing legislation that would actually amend the constitution to deny marriage to the GLBT community. Well, this piece of legislation does not directly affect the disability community. It is important to acknowledge that Proposition 8 is a piece of legislation that represents the first time in history that this country -- this country -- the constitution is being used to take away a person's rights rather than to grant them. >> PAT: We will now take this opportunity to take a few questions from our young people in the audience tonight for Jillian. >> ELEANOR: Okay, I'm going to unmute the audience again. Everybody please if you are not about to ask a question, please mute yourself by hitting the pound key. If this does not work, I'd like to remind you all that you can also E-mail me your questions and that if they are for Jillian, if I get them in time, we'll go over them now but we will also do it at the end. Okay, I'll unmute you now. Okay, does somebody have a question? >> CALLER: I have one question. And I remember if she mentioned or you have to learn who you are to see if you are gay (inaudible). >> JILLIAN: I use the term learn who you are very loosely. Much as we grow up, as we grow up we discover things about ourselves all the time, simple things from whether or not I like chocolate ice cream or strawberry ice cream. It was kind of more or less a process of coming to realize what my preference was. Does that make sense? >> CALLER: It does. I was wondering for many years if I ever felt 13 ready for someone, yet I'm wondering (inaudible). >> JILLIAN: I'm sorry, I'm having a hard time hearing you. >> CALLER: Throughout the years I've been telling myself I'm not quite ready for a boyfriend/girlfriend relationship, but I'm starting to wonder if I might be slightly gay. >> JILLIAN: Well, that's a hard question to answer. Really, what I'd do is look around and talk to people around you. And explore how you feel about people in your lives. On a personal level, I spent many, many years not ready for a girlfriend/boyfriend relationship and I did happen to make my first friend who was a member of the GLBT community and I did find myself attracted to her and all of a sudden all those things I didn't think I was ready for, I was ready for. It was just the case of not the right person around. It may or may not be an indication, but it's one of those things that either way time will tell when it's the right moment and the right person and it will all fall into place. >> CALLER: Okay, thank you. >> ELEANOR: Anybody have any questions for Jillian? >> CALLER: Can you hear me? >> ELEANOR: Yes, please, go ahead. >> CALLER: I heard you say that your orientation is not a choice and for most of us that's true, but there might be some flexibility and in some research I did looking at the national survey of family growth, people with disabilities more often than those without were identifying as something other than heterosexual. So there may be -- or what are your thoughts on that as far as, you know, it may be situational or it may be more open to 14 being with someone from the same sex? >> JILLIAN: I would like to reiterate here that this is all my person opinion and not in any way representative of NYLN's standards. I do believe that there might be higher numbers in the disability community leaning toward identity other than heterosexual simply because within the disability community you become a little more flexible to thinking outside the box. You know what I mean? >> CALLER: Yes. >> JILLIAN: Wherein mainstream society it's a typical A. or B, either you're straight or you're not, and when you're in the disability community, you have to adapt a lot more to the things around you which tends to leave you a little more open minded and while someone may necessarily be attracted to guys nine times out of ten they are more open to that fluctuating and -- does that make sense? >> CALLER: I tend to agree with you. Since this was your area, I was just looking for what your thoughts were on that. >> JILLIAN: Very much my own opinion. It tends to create a more fluid dynamic. The disability community tends to be a little more accommodating and flexible. >> CALLER: Thank you. >> ELEANOR: I'm going to mute the audience now and then we'll have time for a web question. Okay, Jillian, you have one more question and that is how do you deal with the issue of (inaudible) in schools for those who are disabled and part of the GLBT community? >> JILLIAN: Oh, that's an excellent question. Very recently when I 15 actually started to complete my degree in human services, I was in a cultural competency class for human service professionals and that issue of being gay and having a disability came up and it was very much a bullying situation which I never thought I would experience in college. I think for me, myself, what I have done is I very much -- I know my research, and I'm able to defend most homophobic standpoints which do tend to be either religious standpoints or the medical standpoints and I know the facts surrounding being gay, but also more importantly, I make sure that I am okay with who I am. And I don't let what anyone has to say about me having a disability or me being gay get me down because I know at the core who I am and I'm an okay person and that I have a good life, that I have a great partner, that I'm a successful person and while that one person may not understand my lifestyle or my disability, it doesn't mean that I am any less of a person. And then I choose to typically educate people whether it's through educating them about my disability or educating them about my community. And most importantly continue to be a good person because eventually you can show someone that maybe the stereotypes they thought they had about a person with a disability or someone being gay, they might not necessarily be true as they get to know you as an individual. >> ELEANOR: Okay, thank you, Jillian. Let's move to Susan's questions. >> PAT: It is my pleasure to now bring Susan Nussbaum into tonight's discussion. Susan works at Access Living in Chicago. She is a youth planner. She started a girls support and action group nine years ago named 16 the Empowered Fe Fes. Hundreds of Chicago public high school girls have been through the Fe Fes program in that time. The Fe Fes from 2005 made a movie called Doin' It: Sex, Disability and Videotape, which police force relationships, sexuality, reproductive rights, abuse and sexual orientation. The movie has won many awards. It has been shown all over the U.S. and the world. First, could you tell us a little bit about the Empowered Fe Fes, how they came about and where they have excelled? >> SUSAN: Hi, can you hear me? >> PAT: Yes. >> SUSAN: Okay, I think I have the mute on. Okay, yeah, about the Empowered Fe Fes, I think I was -- I became disabled as a young woman and was really amazed by the lack of resources and programs for girls and when I investigated that inside the schools in Chicago, it just completely confirmed everything I really knew, which is that of almost any other kind of oppressed group in the public schools, and there are quite a few, it seemed as if girls with disabilities were the most invisible. So I set about starting a group where girls could come and hang out and talk about things in a safe space and some of the things that I emphasized were things like disability identity and sexuality and talking about reproductive rights and what are they and girls brought all sorts of issues to the group. I mean, they weren't just girls with disabilities, of course, they were -- many of them were people of color. Many of them were LGBQT or gay as Jillian said. And anyway, that's a little bit about the Fe Fes. They have had opportunities to work on lots of different projects, 17 including these movies and I think that's part of the luck of living in a big city and doing a lot of networking. So, yeah, that's about it. >> PAT: Can you tell us about Doin' It: Sex, Disability and Videotape? What did you learn from the process and where can our audience find out more? >> SUSAN: Well, yes, I'd love to tell you about it. This was a project that the girls were -- they came up with on their own and they investigated all sorts of aspects about sexuality and disability because I think all of us with disabilities, no matter what our disability is, really feel intensely the barriers, the social barriers that we deal with in this culture. And so we talked to all sorts of people, including -- we went to a store where they had sex aids for people, who were disabled and nondisabled, but certainly there is all sorts of room in the world of disability for assistance in that way and the girls found out all sorts of things that they never knew existed and it was pretty funny, and we captured that for the video. We talked to lots of girls about their own experiences. We talked to people about the history of sterilization which one of the earlier speakers tonight touched on and how we can combat that and we spoke to someone in the disability rights community who does work on the domestic violence front and talked about her own experiences as a disabled woman with violence and how she was finally able to get away from that situation. So there were a whole lot of things that the movie included and you can actually check out chunks of the movie yourself if you just look for it on the YouTube and type in Empowered Fe Fes. That's F-e F-e-s and certainly 18 one of them will be doing it. And there is also a place you can buy a copy of the movie if you're interested in doing that and I'll tell you about that later if you're interested. But I guess one of the messages I have for people who may be listening is that no matter where you live, there is this isolation that I found youth with disabilities, especially young women, were dealing with in a big way, feeling very alone, feeling like you're the only one, and I encourage all of you to do whatever you can to find out what may be in your community, particularly girls who are questioning their sexuality or who know they are lesbian or maybe transgender, that they find resources in both communities and see, you know, how they can integrate all of those identities inside of themselves and, you know, use your computer. Look around and see what other disability organizations in the country can steer you to, and that kind of thing. >> PAT: We will now take this opportunity to take a question from one of our young people in the audience tonight for Susan. Does anyone have any questions about the Empowered Fe Fes movie they made about sexuality or the importance of creating community space? >> ELEANOR: Susan, you have one question from the Internet already and that person asks how far has the medical community come to acknowledging that people with disabilities are sexual being? Are doctors do any better at providing info on safe sex and birth control to those with disabilities? >> SUSAN: Well, how far have they come -- it's hard to say. It's better, marginally better, but I think for the most part, youth with disabilities need to arm themselves with a few questions and also knowing 19 what their rights are when they go in to a doctor appointment or a gynecological appointment if you're a girl and if you're a boy, just going to a regular doctor. Every doctor should ask a person whether or not if they are of a certain age if they are sexually active. If your -- many doctors assume that people with disabilities are simply not sexual people and it's unbelievable in this sort of -- in the year of 2008 that we're dealing with nonsense like that, but it's true. It's out there. It's just very -- a great deal of ignorance on the part of the medical community even though you would expect them to be more enlightened. And I also think that dove tails with overall lack of information that youth have about birth control methods and their responsibilities when it comes to birth control, what their options are when it comes to reproductive rights and where they can get information, you know. I'm not sure if I answered your question, but you'll let me know if I didn't. >> ELEANOR: Okay, I will now unmute the audience. Please be sure to hit the pound key if you're not already muted and turn the speakers on your computer off. Does somebody have a question? >> CALLER: Yes. >> ELEANOR: Go ahead. >> CALLER: So should there be a special, you know, sex class for people with disabilities in each community? Do you think? >> SUSAN: Well, first of all, you know I think the schools do a generally haphazard job of teaching youth about sexuality and what their choices are. You know, it's very rare when a school really, really tells people the truth about how their bodies work and what things -- you know, 20 what various urges are all about and it depends so much on like who the teacher may be. You know, it's real haphazard like that. Some school systems teach ab city men's only which is a crime. They absolutely should not be allowed to send youth out into the world as so completely clueless about how their bodies are -- you know, how they have control over their own bodies. What was the second part of your question? I'm sorry. >> CALLER: So should there be a separate -- so should there be a separate class? >> SUSAN: Well, I don't think -- you know, ideally, no, but we don't live in a very ideal world, do we? So I think if you have a disability and you have questions of any kind, it really, really, really helps to connect with other disabled people who you can trust who know a lot about these issues and, you know, to demand that there be people like that around. I mean, no matter what your community is, if you're on the phone call now, my guess is that you're pretty good at finding disabled activists, whether they are, you know, disability rights activists or reproductive rights activists. So, you know, it's a good thing to just find a place in your own community where you can get those questions answered. Although of course I wish that we lived in a culture where everyone could come together and get really solid information. >> CALLER: Thank you. >> SUSAN: Sure. >> ELEANOR: (inaudible). >> PAT: In about ten minutes it will be time for a longer question and answer period. 21 >> ELEANOR: Okay, we have a lot of questions for Susan as well as the rest of our speakers who have already gone, but don't worry, we are safing those up and we're going to address all of them once again at the end. Okay? Okay, Pat. >> PAT: In about ten minutes it will be time for longer question and answer period. You, the participants, will ask your questions of the speakers. So if you are joining by phone, please get your questions ready. And for those of you who are joining on the web, please E-mail your questions to Eleanor. Her E-mail address is Eleanor@ncil.org. >> ELEANOR: Let me go ahead and spell that for everybody. I know it's kind of a tricky name. Eleanor@ncil.org. >> PAT: Thank you, Susan and thank you for agreeing to remain with us for the upcoming segments on safe sex and safety. Now Eleanor Canter will join us to discuss these topics. Eleanor is a person with a disability. She lives in Washington, D. C. She works at the National Council on Independent Living. She is an editor and designer. She has a degree in philosophy. She worked for two years at a center for independent living. She was a community organizer. Eleanor likes writing about disability rights. She is into bio ethics, the study of morals in medicine. She is into disability law and the future of the independent living movement. Eleanor, how do you know if you are in an unsafe situation, and what are some strategies forgetting out of it? >> ELEANOR: Well, Pat, unfortunately, it can be very difficult to know if you're entering into an unsafe situation, but it's always very important 22 to trust your gut. If you're not very experienced sexually, you may think that if something doesn't feel right or good, that there is something wrong with you. So always trust your first feeling of uneasiness and don't dismiss that feeling. 85 percent of rape is not committed by a stranger to the victim, but by someone the victim knows and trusts. In the disability community, the rapist is often the caregiver, the person that the person with the disability depends on for independence and sometimes even their lives. You may have questions of yourself like, you know, what constitutes rape? What is rape? The exact definition of rape and sexual assault and sexual abuse and similar terms differ by state. The wording can get confusing because states often use different words to mean the same thing, or the same words to mean different things. So for a precise legal definition, you need to check the law in your state. And a really cool way to get information about this is a website I found and it's called www.rainn.org. It's the Rape and Incest National Network if you're interested in those issues. If someone is press urge you to engage in sexual activity, it's important to remember that being in this situation is not your fault. You didn't do anything wrong and it is the other person who is making you uncomfortable who is to blame. If you need to get out of an uncomfortable situation, here are some things you can try. Trust your instincts. Don't feel obligated to do anything you don't want to. I don't want to is always a good enough reason. Be true to yourself. Do what feels right to you and what you are comfortable with. Have a code word with your friends or family so if you are uncomfortable, can you use that word and let them know 23 that you want to get out of the situation that you're in. Don't feel bad about lying. If you don't want to hurt a person's feelings, it's better to lie and make up a reason than to stay or be uncomfortable or scared or worse. Some excuses you can use are needing to take care of a friend or family member, having somewhere else you need to be, et cetera. Think of an escape route, where are the windows or doors? Is there a phone nearby? If you and or the other person have been drinking, say you would rather wait until you both had your full judgment if that's how you feel. >> PAT: Eleanor, can you tell us a little bit about how to have a positive sexual experience using safe sex practices? >> ELEANOR: Yes, I can, Pat. This is the fun part. Safe sex is such a large topic that it would be really difficult to cover every aspect here tonight, but we'll go into a little bit of detail. The most important thing to know is that there are resources out there to educate yourself so you can enjoy safe sex when are you ready. You have the right to this information. If a parent or caregiver or doctor or anybody else thinks that that information about sex is not appropriate for you, have a talk with them about how you have to make decisions for yourself and let them know that you can't make the best decisions without having all of the information. If you can't get information you need from your doctor, planned parent hood is an excellent resource. They have a commitment to empowering people with all the information necessary for family planning and a happy, healthy sex lisp. If you don't have a planned parenthood in your town, Community Living Exchange Collaborative out planned 24 parenthood.com. They have a lot of this information posted on their website and you can do research about safe sex there and family planning. Don't forget the doctors are bound to keep your conversations private, but laws can differ from state to state when it comes to people under the age of 18 or people who have a legal guardian. So make sure to talk about confidentiality before you talk to anybody, including your doctor, if that's something you're worried about. Nobody has a body to die for. Safe sex is always better. It's fun and you don't to have worry as much. Safe sex is making sure you don't get anybody else's blood, semen, vaginal fluids in your body, and protecting your partner's body, too. Measures that make sex safer are birth control, which includes prescription medicines, or devices from your doctor, condoms, choosing not to have sex and emergency contraception. You need to educate yourself on all of the options available so you can create a plan that works for you. Safe sex is also about protecting yourself from sexually transmitted diseases and infection. Diseases and infections can be passed from one person to another even if you are not engaging in full on sex. Oral sex and other forms of touching can also spread sexually transmitted disease. So it's important to use protection whenever any bodily fluid is involved. Use a condom or dental dam at all times. You can find more about these products at a really cool website I've found called www.positive.org. It's all about young women and their efforts to make safe sex a fun, positive experience for everyone. So it really encourage y'all to check that out. It's called positive.org. 25 Always use a condom before any form of sexual activity, including foreplay! If your partner says no or makes you feel guilty, that is a big red flag. If this happens, take a break and collect your thoughts. Go get a glass of water and think about what you'd like to do next. Communication with your partner is incredibly important. If you two aren't on the same page, then one or both of you may not be ready for sex. Always talk about safe sex with your partner before you get into a sexual situation. This is the cool part because you can be creative with this. You can have some fun researching stuff together, experimenting putting a condom on or thinking of ways to make safe sex fun. Okay, I'm going to go ahead and open this up to a question from the audience. Hold on, please. Okay, does somebody have a question? If nobody has a question for me we'll go ahead and open it up to all the speakers. I know we have a lot of questions and if you have any questions for me, you're welcome to come back. >> CALLER: I'd like to ask a question of the lady who was talking about reproductive justice. >> ELEANOR: If you can all remember to turn down the speakers on your computer now. >> CALLER: Hello? >> ELEANOR: Are you still there? >> CALLER: Yes. >> ELEANOR: Okay, go ahead. >> CALLER: I guess I've been kind of confused because like the lady 26 was saying about eugenics, how they used to not want disabled people to have children and they tried to sterilize and things like that. I feel kind of like that is going on still because I always hear the reproductive justice people talking about how people wouldn't want to have a disabled child and like when a friend of mine was telling me that when Sarah Palin was running for office, some of his friends were making fun of her for having a disabled child and were saying that she wasn't fit to be a president or vice-president if she was going to have a disabled child because most people wouldn't. And I don't think we get equal information when we ask questions. And I was wondering if that's your experience, too, and what you think we should do about it? >>You're right, sometimes we don't get equal information and I think we should keep asking until we feel like we do. But, yeah, and I think that's part of your voice and your job as being an advocate for yourself to make sure that you get equal information. >> CALLER: Thank you. >>Does that answer your question? >> CALLER: I think it does. I was curious if you've noticed that, too, that it seems, you know, like they are always talking about how people don't want to have disabled children or something, like that's horrible. >>I've heard both sides of the issue. I've heard a lot of that, but I've heard a lot of the other side, too. So I agree with you. >> ELEANOR: We'll take a web question. >> CALLER: Hello? >> ELEANOR: Okay, one of the questions that we have, and this doesn't 27 have a certain speaker's name, I think it might be for Susan and anybody else fee free to jump in. Do you think issues of sexuality, dating, sexuality orientation should be discussed during transition? If not, when do you think an appropriate time to begin this discussion? >> SUSAN: Hi, you mean when a person is 14 -- in their teen years with lots of (inaudible) transition I'm assuming. I think the conversation needs to be taking place much earlier than that, and you know I think people understand and learn more about sexuality and different aspects of sexuality and their own bodies over time. It's a process and maybe as a child you would say certain, you know, you would have a more limited way of talking about the full range of sexuality, but certainly anyone -- any disabled person who is in high school and going through a transition process must have all that kind of juicy info that they need. And if you're not getting it, which is probably the case, call your local Center for Independent Living and see if they have something. They should. You know, I'd also like to -- can I answer a different question that no one asked? >> CALLER: Yes. >> SUSAN: Think about masturbation. I'm a big advocate of that. So if people -- well, for everybody, but I think that people with disabilities, we need to think about masturbation, especially when we're teens as a really great option and it's a good way of learning about your body and what makes your body feel good because after all our bodies are -- the bodies of disabled people are sort of like battle grounds. You know, doctors poke and prod and parents tell us we can't do things and we'll 28 never have sex. We'll never get married, et cetera. And I think that when you learn how to pleasure yourself, you find a new aspect of how your body is really your friend and it's really your body and capable of experiencing tremendous pleasure. I just wanted to throw that in while I had a chance. >> ELEANOR: We have a lot of web questions to ask and we'll do a few more of those and then we'll come right back to the audience. John, are you still with us? >> JOHN: I'm here. >> ELEANOR: If you all remember John spoke to us about dating and relationships. And John, you had two questions. One is, dear John, how does one get beyond being just friends? And the other question was could you please repeat your website information. People would like to visit your website. >> JOHN: Okay. So how do you get beyond being just friends? It's good to really, really, really get to know the person that you're interested in and if you're friends with them, that's great. I guess if you're really in to them and you want to take that relationship to the next level to a relationship, it's good to sit down with them and have an honest discussion and say this is how I feel. I'm wondering if you are feeling the same and would like to think about taking this relationship or this friendship to a relationship. And the second question, it's abilitiesconsulting.org. >> ELEANOR: Okay, we're going to do one more web question. This one is for Jillian. >> JILLIAN: Yes. 29 >> ELEANOR: It's a bit more of a comment than a question, but Jillian, you used the word gay as an umbrella term for the GLBT community. It's important that people understand that sexual orientation and general dear identity are not the same. Transgender and intersex individuals are often misunderstood and left out in most discussions and research. Not all transgender individuals are gay, lesbian or bisexual. Some transgender individuals are straight as well. As a gay, transindividual who has several disabilities, I wanted to make that aware to those who are participating. Jillian, thank you for your time and dedication to the GLBT community and the community of individuals with disabilities. People first. >> JILLIAN: Shall I respond? >> ELEANOR: Yes. >> JILLIAN: I want to say absolutely thank you for adding that. There is so much information to share about the GLBT community that I did kind of have to downsize to a very accessible smaller amount of information that I thought would reach the most -- the largest amounts of people. I am a wonderful advocate for the trans community. 90 percent of my friends identify as trans. Thank you very much for adding that. I was trying to mainstream my information as much as possible to go with the most common concerns and issues, but thank you for adding that very much. >> ELEANOR: Okay, great. I'm now going to open it up again to the teleconference audience. Hold on while I unmute you, please. And please put your sieves on mute if you will not be asking a question right now. Does somebody have a question? 30 >> CALLER: Yes, I do. I'd like to -- I have a question unique to disabilities and sexuality in that a number of disabilities and the medications that we take for -- to deal with the disability affect our sexual responsiveness and even sometimes our feelings of desire. And sometimes -- how would you suggest we deal with it? >> JILLIAN: This is Jillian, this has nothing to do with the GLBT but can I respond to this issue? I'm going to respond since no one objected. I asked my doctor about it. It was very important to me that I not be affected by my medication with my sex drive. So I talked to my doctor and we were able to work out alternatives to my medications so that I wouldn't have as great an effect, but in the interim, I also talked to my partner about communication was very important to understanding that I'm on this medication and it kind of affects me in this way. So I need other ways to be intimate or other ways to express that. It was very helpful. Like a poster of 100 different ways to be intimate without having sex. So you can show someone that you have that (inaudible) about actually (inaudible). >> ELEANOR: Thank you. Does somebody else on the teleconference portion have a question? >> CALLER: I have a question. >> ELEANOR: Go ahead. >> CALLER: I started seeing a guy about a month ago. And I was sees up by a mutual friend. And (inaudible) before we started talking or whatever and it's getting kind of awkward though because I know that he has questions about it and I know he doesn't care, but having questions and not caring are two separate issues and I'm not sure how to encourage him to ask 31 questions without making him feel awkward about it. >>Are you talking about questions about your disability or about what happens? >> CALLER: About my disability in general. I don't -- I'm getting the impression from the way he's acting around me that he doesn't care, but that he's nervous about things I don't think he's ever interacted with people with disabilities before. >>That's a wonderful question. And that sounds like a question for you, John, unless somebody else wants to jump in. >> JOHN: If he is not asking about your disability and you feel that you might -- it might not be that he's not interested in knowing about it, it might be that he just doesn't know how to ask. >> CALLER: Right. >> JOHN: So maybe it would be you sitting down with him and saying, you know, this is what I'm dealing with and a little bit of what you need to know about me if you feel comfortable doing that. >> CALLER: I'm just afraid that if I bring it up, he's going to think that I think that he cares and I know he doesn't care. >> JILLIAN: This is Jillian. Can I answer that? (inaudible) and it's also very important to me that the person I'm dating understands how that affects me. I tend to take a very casual approach. Like we'll be hanging out at my house and I'll have like -- hey, here is a really good book about my disability. Can you check it out if you want and give them that opportunity to have all the answers in front of them. Providing them with something that's important to me, kind of opens up that conversation. 32 >> SUSAN: This is Susan. You know, this is -- you're talking about the conversation and I think we've all had it a lot of times and a lot of different ways, and my thinking is similar to everyone else's, but I think you should maybe say, look, you're so -- I sense you're really relaxed about my disability and I love that, but if you ever have any questions, I'm relaxed about talking about it. And you should feel free to ask me whatever comes up whenever it comes up. So that's what I would think, too. Add that. >> ELEANOR: Great. We're going to take another web question now. Hold on. Okay, Susan, this question is for you. I had the pleasure of meeting one of your participants this summer in Costa Rica. What is a piece of advice for a newly disabled woman rediscovering her sexuality? >> SUSAN: What is my advice for a newly disabled woman? >> ELEANOR: Uh-huh. >> SUSAN: Oh, take heart. Take heart. Everything, you know, that they tell you in the hospital is extremely -- you know, disturbing, usually, and it has very little to do with reality, if anything. So my advice would be to search out and find a peer that you can talk to about your questions. Or a group of women with disabilities that have had a lot of experience in being a disabled woman and just pick their brains as much as possible. You will get a tremendous amount of support and a tremendously -- I would hope -- really prosexuality sense and if you know such a person who is in a state of confusion because of a new disability, they need to be assured that they may have lost certain functions in their body because of the disability, no matter what it may 33 be, but they certainly have not lost their ability to be sexual, to be -- to have -- to be fully sexually active or just active to the extent that they wish. They will find all sorts of alternate ways of doing that. >> ELEANOR: We have one more question from the web and this is not directed to any particular person. So whoever feels like they might have some advice, I feel like this is a really important question. My boyfriend and I would like to get married but we wanted to know how marriage will affect my boyfriend's government benefits. He has Social Security through his mother's Social Security earnings. He's also in Section 8 housing. I work full time. Does anyone on the panel know the answer? And if not, what is the best way to find out the answers to these kind of questions? >> SUSAN: This is Susan. Yes, I think that the answer is it will affect your benefits and the best way to find out how would be to contact a Center for Independent Living that's in your area or some other disability rights agency where people have -- or anything like that where you can get some very clear, exact information on how it would affect your benefits and, you know, how you might mitigate that effect. But it is an ongoing issue. It's a terrible situation for people with disabilities who are interested in getting married and there are ways around it, but you need to appeal all sorts of things I believe. So that's an unclear answer, but search out knowledgeable people on this area. >> ELEANOR: Great. Let's take another question from the teleconference audience. Everybody please remember if you're not muted already to push the pound key to mute yourself and to turn down the 34 speakers on your computer now. Okay. Hold on. Does somebody have a question? Nobody else has a question right now? If you're on mute, press pound again to unmute yourself. Okay, well, we'll take another web question then. This one is for John again. And it is a follow-up question to the question that was asked earlier, John, about taking a friendship to the next level. This person says, John, I'm afraid I'll lose the friendship and be considered a jerk. And the end of the E-mail says but I'm always afraid. >> JOHN: Okay. Well, that's a tough question. That really is. I would say that you would need to weigh your wanting to be in that friendship over the need for that relationship if you are sure that it's not going -- that the other person -- it might not work out with them. However, if you are just afraid, it would be good to take that leap of faith and see what happens. And explain to the person that no matter what happens, you'll still want to be friends. >> ELEANOR: Great, thanks, John. Here is another one that I think is really important. It is not addressed to any specific person, but how do people with disabilities negotiate attendant care and maintain privacy in their sexual life? >> SUSAN: This is Susan. Well, hmmm... it depends on your disability in terms of how much privacy or if you need assistance, for example, if you're a woman, putting in birth control or maybe even getting a condom on if you're a guy. These are all options that are open to you, but it's good when you're hiring a personal assistant to put out there what some of the needs you have that might come up and is that person up to the task? Are 35 they fine with the idea? Are they fine with the idea of people with disabilities being in relationships and you can say, look, I had need help, for example, transferring into bed at night, but after -- and then my partner as well perhaps, but after that, I'd like you to leave the room, make yourself scarce or whatever it would be. But you have to figure out what the boundaries are and explain them clearly and it will be okay. >> ELEANOR: Thanks, Susan. This question is for Amy. I re(inaudible) in Texas I found that the age had to be 25. How can people find out more about such statutes as this and how they can advocate to get these changed? >> AMY: Honestly, technically, I don't know the answer to that question and I live in Texas. So that's very important for me to have an answer but I don't know the answer to that question. Can I open it up to some of the other speakers? >> SUSAN: I didn't really hear the entire question. So sorry. >> ELEANOR: How can people find out about statutes that involve reproductive justice and advocate to get those things changed? I think there are some things that are simply really hard to find out about, things that don't get talked about very much. How can you find out about those very odd, sexual laws? >> SUSAN: Well, yes, there are organizations that do advocacy around these issues. And usually there is one that the state actually pays for. It could be called the guardian and advocacy commission or something, but there are other more independent groups, too, that are familiar with all the laws and whatnot that have to do with our bodies and I did get on the 36 web if you have access, since I assume you do, and type in a few combinations that would lead you to some answers or to an organization or two where you could call and really get some good answers. Good, solid, factual information. Yeah, I think that would be a good option. If you lived in Illinois, I could tell you exactly what to do and where to go, but I haven't been to Texas in a very long time. >> ELEANOR: Okay, we have one last question for Susan. And that is, Hi, Susan, I saw you listed in -- I'm on not sure how to pronounce this right -- (inaudible) a magazine, visionaries of the year edition. You talked about different identities the Fe Fes have. (inaudible). >> SUSAN: Different identities? Yes, I think so. I think it's really, really important that girls come to -- I think safe space includes, let me just say that, not just having your disability accepted or your -- the fact that you're female accepted, but that you are Asian or that you are black or that you are dealing with, you know, homophobia. All of those things are so interconnected and you have to really integrate all of them together and there has to be freedom for youth to do that no matter what kind of program they are in. The Fe Fes have had a lot of opportunities, and they've grown as a result of making these movies and going places. They've traveled a little bit here and there and, yeah, they have -- they've been able to, I think, develop their ideas and see themselves as belonging, really, to the world of ideas and to develop a real sense of who they are and their confidence as people with disabilities and all of it because they have had some light shined on them. You know, it's something that's so important for youth, especially youth with disabilities to just 37 get that kind of positive attention. >> ELEANOR: Thank you, Susan. Pat, ire up. >> PAT: Okay, thank you all. This is the end of the speaker's session, now we will begin or participants session in which the speakers answer the questions asked by the participants. >> ELEANOR: I'm sorry, we have to wrap up now. That's okay. >> PAT: Unfortunately we are coming to the conclusion of our call this evening. Please visit the national youth leadership website at www.NYLN.org for more resources and further information for your review. On behalf of the National Youth Leadership Network, I would like to thank the participants and speakers for taking time out of your busy schedules and joining us today. We also want to thank ILRU for their support. Please join us in January for our next teleconference call and webcast. Thank you all for joining and have a good night. >> ELEANOR: Good night, everybody.