Down Syndrome Out Loud

On Season 11, Episode 3 of The LowDOWN: A Down Syndrome Podcast, Karen Gaffney, Zack Gottsagen, Charlotte Woodward, and Melissa Hart give us the lowdown on Down Syndrome Out Loud.

Transcript

Thanks, Danielle. We're joined today by the author of Down Syndrome Out Loud, a powerful new book that brings together many voices from across the down syndrome community, parents, self-advocates, advocates and professionals to paint a fuller, more honest picture of life with down syndrome. We're also excited to be joined by three extra fabulous Self-advocates with down syndrome. So I have a lot of bios to go through this time. Let's do it. So we have miss Melissa Hart is a journalist from Oregon who grew up with a brother with down syndrome. He's the inspiration for her two middle grade novels and her newest nonfiction book, Down Syndrome Out Loud. Her writing has appeared in The New York Times Magazine, Smithsonian, Los Angeles Times, Nat Geo Kids, and numerous other publications. We're also joined today by Zack Gottsagen, a professional actor, dancer, and disability rights advocate. Zack's talent, passion and motivation and perseverance have been the impetus in building his expanding performing arts career, Zach has won many awards, including the Down Syndrome Foundation, Quincy Jones Exceptional Advocate Award, Outstanding Breakout Performance from the Crested Butte Film Festival, the Rising Star Award from Palm Springs International Film Festival, Newcomer Award from the Hollywood Critics Association, Breakthrough Entertainer Award from the Associated Press. Zach presented the Media Access Award in 2019 to the producers of The Peanut Butter Falcon. At the 2020 Academy Awards, he became the first person with down syndrome to present an Oscar. I'm handing it to you Hina. Keep going. All right. Yeah. So our second amazing, um, self-advocate. Uh, we're very excited to welcome Miss Karen Gaffney. She is currently working as an administrative assistant 32 hours a week at a law firm. On Fridays and the weekends, she works, um, in her non-profit called Karen Gaffney Foundation. She presents talks and workshops about her experiences with employment, as well as her experiences with inclusion in the classroom. She advocates for research on the early onset of Alzheimer's disease for adults with down syndrome, and is also an active athlete because she swims two miles a day before work and works out on weights, too. Oh my gosh, Karen, that's amazing. And we're also joined by the wonderful Charlotte Woodward. She is a young women young woman who has down syndrome. She's had four open heart surgeries and a life saving heart transplant. Charlotte works at the National Down Syndrome Society as their programs associate. She is a graduate of George Mason University, from which she received a Bachelor of Arts degree in sociology with a concentration in Inequality and Social Change. She is a passionate advocate for the human and civil rights for all people with down syndrome, and frequently writes and speaks on issues important to the disability community. I am just so excited, you guys. Thank you so much. Welcome to Melissa to Zach, Charlotte and Karen. Thank you for joining us. Oh thank you. Thanks. And thank you to thank you. Um, okay. So we have a tradition here at the Lowdown Podcast. Before we get into the interview, we like to ask our guests some secret questions. Okay? They're fun little icebreaker questions so our audience can get to know you a little bit better. How does that sound? Sounds good. Okay. All right, I'll take the first question, and then I'll hand it back over to Mala. Um, Charlotte, let's start with you first. Do you prefer going to the beach, or do you prefer hanging out in the mountains or the forest? I would choose a beach. Okay, great. Any fun activities on the beach that you like to to do? Ooh. Uh, lots of things I like reading, playing card games. Yeah. Um, Halloween, etc.. Yeah. Oh, I love fabulous. Yeah. Relaxing time at the beach. Um, okay, I'll ask this question to one more person, then I'll hand it over to Marla. Um, Zach, what about you? Do you prefer going to the beach? Mountains, forests? What's your choice? Um, big beach too. Okay. Yeah. Yeah. And are you. What do you like to do at the beach? Are you also like Charlotte, just relaxing activities, or do you like to get in the water? Actually both things. Both things. Okay. Yeah. Yeah. Mix it up a little bit. Yeah, totally. All right. I've got a new question here, which I will ask to Karen and Melissa. Um, first off, what is your number one fave? Are you into chocolate or vanilla? It's an ultimate debate. Melissa can't answer. She's shocked. Let's give it. Let's give it to Karen first. What do you think? Are you into chocolate or vanilla? Mm. Are you first? Melissa? I love, I love both. Why are you making me choose? I know, I guess I tiny bit more I love chocolate. Yeah. Okay. All right. What do you think, Karen? Do you agree with her, or do you have to go the other way? I agree, yes. Okay. Fair enough, fair enough. Yeah. All right. Chocolate for the win. Okay, we're going to get into the topic of this fabulous book, which is such a great compilation and really fun to read. I have a question for you, Melissa. And just to set the stage for us here, where did the idea for this book come from? Right. So I grew up with a younger brother who has down syndrome, and we were really best friends as we were growing up. We loved to go hiking and go to the park together, and we love to play guitar and sing old Peter, Paul and Mary folk songs. But we could not find a single book that represented my brother with down syndrome or our family dynamic, and that really troubled me. After I graduated from college, I was a special education teacher for ten years, and I still couldn't find any books about people with down syndrome. I didn't think that was okay, but for a while I became a journalist and I started writing for the Washington Post maybe four years ago, and did a profile of Chris Nikic, who is the first person with down syndrome to complete an Ironman triathlon, and also Abigail Adams, who is the first person with down syndrome to complete a women's sanctioned sprint triathlon. And I thought that was really fun. And then I profiled Alison Fogarty, who is CEO of Alison's Doggie Delights, a dog treat company. I profiled her for a dog magazine, and I got to thinking, if these three people are doing such fascinating things in the world, what are other people with down syndrome doing in the world? And so I worked up a proposal for my agent, and we sold the idea of down syndrome out loud to sourcebooks, a publisher. And I got to interview and write profiles of 22 people all over the world. It's fabulous. And this. Yeah. This is a very readable book for anybody, which I think is awesome. Like, I have a sister with down syndrome, and I imagine she's going to love this book. Um, because it's so important and so crucial to see yourself in print. Um, let's see. I'm going to switch it over and let's talk about let's go with what are you hoping to achieve? Like broadly with this book, are you trying to make this book available widely? What's your goal here? Oh, this is a question for me. Yeah. Yeah. Um, this book is available widely. This book is available wherever books are sold. Any online or or or brick and mortar bookstore all over the US and Canada and the UK. It's available as print, as digital and as an audiobook. And I got to narrate it. That is so cool. So those people who don't feel like reading, or maybe they struggle with reading, they can listen to it while looking at Maria Pereira's incredible illustrations. My goal is to, with the help of the 22 people profiled in this book, Revolutionary, revolutionize the way people think about down syndrome and treats people with down syndrome. After seeing my brother ostracized for a lot of his life, that absolutely needs to change. And this book, with the help of these people in this podcast, we're going to change the world. It's happening. It's happening right here and now, which is a really powerful feeling. Very fantastic. Mhm. Um, I would love to let's maybe let's start by talking to some of our wonderful advocates that are here to Marla. What do you think? I think so. Yeah. All right. So, Zach, how about I get started with you first? What? We all know you as a wonderful actor and an advocate. Uh, can you tell us what inspired you to become an actor? Okay. Um, okay. Um, when I was a. Little kid I wanted Chris Burke on. Life goes on. And then I was in a play in. Preschool and won a frog. I loved it and wanted to be in actor. Oh, great. So this is lifelong? Yeah. Since preschool man. Wow. Yeah. This has been a lifelong goal for you. And Chris Burke is a really great inspiration because he was one of the very first people with down syndrome that we saw on the screen. Right. So and it's been a long time since we've seen anybody. I feel like until you, Zach, and now we're seeing more people with down syndrome on the screen. So way to inspire and to change the industry. So that's really, really cool. Um, let me ask you one more question. Then we'll maybe jump over to one of our other guests. Um, what advice do you have for other people with down syndrome or disabilities who want to go into acting? Um. Uh. I would say, um, um, just to be, uh, just to be inspired, like, go for, like, um, go for, like, so many people could have, um, opportunity, um, pursue their dreams. Mhm. Yeah. So look for opportunities and to be persistent in going after your dreams. That's awesome advice. Zach, just curious, do you have any other acting jobs or any projects coming up in the near future? Uh, actually, yes. Yes. Awesome. Yes I do. What are you. What are you working on? Oh, um, actually, I am, uh, working on, I would say, um. Um. Um, neither. Which comes. Oh, okay. It's the movie. Yes. Night always comes. Okay. We're going to keep our eye out for that one. That's awesome. Um. He he he he it could be on the, um. Um, Netflix. The, um. August 15th. Oh, it's coming out real soon. I was going to say, mark your calendars. Okay. August 15th. Netflix night always comes. Very exciting. Yes. And and It and plus I am going to be doing the next project. It is called the um. Forever home. Okay. Um, it is about, you know, um, uh, dogs. Oh, okay. Yeah. Is that a movie as well? Yeah. Um, movie? Yes. Sweet. Very cool. That's awesome. We're so excited to see you back on our screens again. It's been a long time. Oh, yeah. Um, same here for me. I yeah, I know. That's awesome. Thank you so much. Marla. Do you want to. Oh, yeah. I have questions for everybody. Oh, here we go. All right. I have my first question here is for Karen. Um, Miss Karen, let's talk about swimming when you were younger. So how old were you when you started swimming? Because you took on, like, this huge challenge of the English Channel, right? Which is major. But let's talk about where you started. Well, I you know, I started swimming when I was about nine months old. Oh, my, my dad taught me how to swim, and actually, I could swim before I could walk. Whoa, that's so cool. That's okay. So swimming has been sorry. Yeah. It's good for strength, I guess. And coordination. Yeah. Yeah. So swimming really helped me because I had several surgeries on my hips while I was growing up. Okay. In fact, I was in a full body cast five different times. Wow. So when I got out of the body cast, I got right back in the water to start walking again. And you start swimming again. And I've been swimming all through school. Okay. See, my swim team when I was in grade school and on my high school swim team at Saint Mary's Academy. Okay. And I've been swimming ever since. And I swim two miles every day now. Wow. Do you swim two miles indoors or outdoors now? Indoors. Indoors. Okay, so that's an everyday part of your routine? Yes. And when did you decide you wanted to take on the challenge of swimming the English Channel? Well, first of all, it is important to note that that swim was a relay swim across the channel, not a solo swim. Yeah. And this whole thing came together because a couple of swimmers at the swim knew that this was a challenge I wanted to take on, and it was their idea to do a relay swim. And pretty soon we had two relay teams training for the channel. Okay. For a whole year to get ready for this swim. Mhm. We had to build up our endurance by swimming in really cold water. The water out there in the English Channel is about 60 degrees cold. No vaccines allowed for swim, no wetsuits. I had no idea. No That's it. My gosh. Catherine, goggles are allowed for channel swim. We did a lot of cold, open water swim practices around the Portland area and down the Oregon coast to train for this great event. Okay. We had two relay teams and in place and also, um, and we had we had relay teams that were successful. The English Channel is about 21 miles straight across, but when you swim the channel, you are swimming with the tides and it takes you in a big S shape from England to France. So both our relay teams spent about 35 miles that day. Wow. Okay. That is fantastic. So you got your whole two teams achieved what you set out to accomplish with all of that preparation. That is fantastic. Thank you for describing that for us. I think that's just incredible. And cold. Very cold. Um, let's see, I have another question for you, because I want to make sure people know that you've given a TEDx talk. And when a question you asked during your TEDx talk was, is there a tomorrow for people with down syndrome? And I'm wondering what you hope tomorrow looks like for people with down syndrome? Well, you know, that is a great question and thank you for asking that. I want to see a tomorrow that focuses on research and education to improve our lives, not on the efforts to end our lives before we can even take our first breath. We have shown what is possible with healthy lifestyles, good medical care, and inclusive education. We need to continue to show the world that down syndrome is a life meant to be lived. We need to keep improving the research, the healthcare and the education to make it even better for those who are just starting, starting our journey now. So that's my hope for tomorrow for people with down syndrome. That is so powerfully said. I don't think I can add anything to that at all. That was just powerful enough right there. The mic drop moment. Yeah. Yeah, absolutely. And now I'll pass it to you to ask some questions of Charlotte. Yeah. Um, Charlotte, um, I would love to know. We were just before we got on this podcast, we were celebrating some really great news of some of your efforts, of what you've been working on. Um, of course, you know, there's currently a law before Congress that will impact organ transplants for people with disabilities. Can you tell us a little bit about this initiative and how you're involved and give us a bit of an update? Yes, I am honored that there is currently federal legislation before the United States Congress that bears my name, the Charlotte Woodward Organ Transplant Discrimination Prevention Act. This past Monday, my bill was passed by the US House of Representatives and it has been introduced in the Senate. I am busy advocating for its passage there as well. How did this come about? Well, not only was I born with down syndrome, I was also born with a congenital heart condition. I have had four open heart surgeries, three and as a baby and one when I was ten years old. As I grew, my heart struggled to support my body. As it struggled, worsened, my cardiologist determined that there was nothing more that could be done surgically to help me, and that I was in The dire need of a life saving heart transplant. Fortunately, my transplant team considered me an excellent candidate for life saving procedure, and I am proud to say that on January 30th, 2012, I received a very, very healthy new heart. I had been in excellent health ever since, and I am so very, very grateful for the generosity of my heart donor and to her family, and for the willingness of my medical team to provide me with the opportunity to receive this life saving gift. Too often, people with disabilities are denied life saving organ transplants because of institutional bias, prejudice, discrimination, and discrimination in the medical field against people with intellectual and developmental disabilities and other disability The conditions. Uh, shortly after, I began working at the National Down Syndrome Society and was contacted by a family who had recently been told that their son was being denied a life saving kidney transplant, all because he had been born with down syndrome. And yes, that's worked hard to bring attention to this case. And fortunately, the young man ultimately did receive a new kidney. But learning about this injustice, which was the opposite of my experience, made me want to challenge this inequality. I am so thankful that my doctor looked beyond my down syndrome diagnosis and saw me for who I am. Someone who is deserving of the same opportunity for a life saving organ transplant, just like Anyone else and advocated for my right to be considered for a transplant just like anyone else. As I learned more about the issue, I became determined to work towards ensuring that right for everyone with down syndrome and those with other intellectual and developmental disabilities, which has led to the Charlotte Woodward Organ Transplant Discrimination Prevention Act at the National Down Syndrome Society. We believe that all people with down syndrome should have the right to access quality health care, including organ transplants. Currently, 40 states have the have non-discrimination and organ transplantation laws on the books. I am proud to have had a hand in helping my state, Virginia, get a nondiscrimination in organ transplantation bill passed in 2020. And because of a rousing speech I gave about my heart transplant and the importance of the bill for people with disabilities, it passed unanimously. However, a federal bill is still necessary because even in states which currently have nondiscrimination in organ transplantation laws, individuals with down syndrome have been denied life saving organ transplants and have tragically lost their lives due to the discrimination. My bill aims to prevent that from ever happening again. Having a disability is a natural part of life. People with disabilities are more like everyone else than we are. Different people with disabilities, including those with down syndrome, have the right to be proud of who they are, to be treated with dignity and respect, to participate in and to enjoy all that life has to offer and to be included just like everyone else. Wow, Charlotte. That's amazing. All three of you are so amazing, so inspired by just listening to all of your efforts, and you're all doing such a great job for your community and your individual ways. Um, Charlotte, that seems like that's a lot to, um, of work that you've done. And it's so great that you've had the House of Representatives passed. And again, Senate is the next thing because of course, it needs to pass through the Senate to become actual law in the US. So you're halfway there, girl. We're so proud of you. Keep going. Um, can you just tell us also a little bit about your role at the National Down Syndrome Society? What are you doing with those with that organization? Uh, so the National Down Syndrome Society, I work as a program associate. I have my hands in many of NSS programs, which include employment, education, health and wellness, and policy and advocacy. I create resources for the programs, sometimes in collaboration with my colleagues. I am the third registered lobbyist with down syndrome and and am frequently on Capitol Hill talking to Congress people and promoting the passage of important state and federal legislation that impacts the disability community. I also travel to conferences, give speeches and presentations and much more. I love my job as it gives me a sense of belonging and inclusion, and gives me the opportunity to advocate for the human right, for the human and civil rights of all people with down syndrome. Wow. Incredible. Incredible. Um. And. Yeah. And DSS or the National Down Syndrome Society. It's a huge organization in the US that supports and advocates for people with down syndrome. So it feels like the perfect place for you to continue to do your work. That's really that's really exciting. Thank you so much for sharing. Um, Zach, Charlotte and Karen about your experiences. We'll probably come back to you in a second. Um, but perhaps maybe we'll just kind of check in with Melissa again. Um, uh, Melissa, can I ask? I was just curious. What, um, what are your. Do you have any upcoming? Because you're just you are a repeat guest at The Lowdown, and we're so happy to have you back as our guest again. Are there any upcoming projects or initiatives you're working on that continue to explore the themes of inclusion and representation? Oh, always. You know, that's what I've always been about as a journalist for the last 25 years, um, writing about inclusion and marginalized communities, um, in a variety of ways. Definitely. For the next year, I and many of the people from Down Syndrome. Out loud will continue to tour promote the book. Um, speak on panels, go to conferences. We really want this book to be a jumping off place for conversations that move the story forward and address some of the misconceptions and, frankly, the hate speech that we're seeing, at least in the US. And so, you know, for the next year, uh, this is this is what I'll be pursuing. And then helping people in the book with their very various legislative pursuits as well. But in the meantime, I'm also under contract to write a completely different nonfiction book. It's actually a book of nature essays for adults, and it expands on the idea of getting to know your space by getting to know your community and build a cohesive community. Um, for a variety of reasons and so completely different book, but in some ways the same. I feel like most of my writing is around empowerment and community building. Awesome. That's wonderful. You guys are going to be busy for the next year talking, doing panels. I feel like you're very well equipped though. Your power team here. Absolutely. Um, I have another question for Karen, because, Karen, we haven't spoken about your role in the law office, so I would love to hear about your advocacy efforts, um, and law and what you do there. Yeah. I work at S, K and H family law, uh, four days a week from 9 to 530, Monday through Thursday. And in this job, I work in the department where I prepare the paper files to be scanned to create digital files. Then I do all the scanning of the files that I just prepared. I really love my job because I have to focus on the details and the process. Steps to scan each file accurately. Absolutely. I also, I also really like the people that I work with. They are in my job at S, K and H. I have a great manager who really helped me be a part of the team. Mhm. That's an inclusion piece that you're also advocating for right Karen. You're feeling included. Yeah. That's awesome. Um Zach can I ask you another question? Sure. Um, can you describe your dream role in a movie? Like, if you could have any kind of movie that you wanted to be in, what would that look like? I would say. Um, acting in films, TV voiceovers and commercials. Ooh, okay. Commercials for what? If you could pick anything, what would you want to do a commercial for? Um, for, like I would say about, uh, I would say about, um, you know, about having a, having a very dry skin or, or go for a, you know, um, I would say, um, um, beer commercial. Yeah. A wide range of that. So I'm hearing health and wellness commercials or beer partying and wellness. Perfect. Beer commercials are pretty hilarious. There's some really funny ones out there. Zach, I could see you doing a really cool, fun beer commercial. I like that idea. Yeah, and I like that you said voiceovers too. So would you want to do voiceovers, like in animated movies or. Yeah. Oh, like, um, like I would say about all the, um, I would say, um, I'm on tons of different show like being in, you know, um, I would say, um, um, cartoons. Mhm. Or um. Disney. Yeah. Or doing all the um. Mm mm mm. Actor. Mhm. And um, and doing all the crazy stuff. Love it, love it. All the crazy stuff. That's where the fun is at. Totally totally. I feel like doing a beer commercial would be groundbreaking in itself because so few people who are outside of our community even realize that adults with down syndrome might want to drink, do drink, can drink, and you would just like break barriers with that. That would be amazing. Yeah. Cool. Come up with your own beer brand, too. That'd be kind of cool. All right. Awesome. Stay in school and And study hard. Been in place. Follow your dreams. Take acting classes. That was excellent advice. Because you know what, Zack? We have a lot of adults that we work with that also want to go into acting because we do a film festival every year, and there's so many students that are want to, to go into acting. So your advice is going to be so helpful. Um, Charlotte, we would love to know what I mean. Of all the great work that you're doing, what is your advice for other individuals with down syndrome or disabilities that want to also advocate and want to enter into kind of to do what you're doing? What would your advice be for them? So there are many ways to get involved in disability advocacy. Um, if you go to the National Down Syndrome Society's website at NDSS.org, and that is NDSS.org, you can sign up to receive action alerts that allow you to contact your legislators and urge them to support legislation that will benefit the down syndrome community. On the website, you can also learn how to become a Des ambassador. Uh, someone who learns about about ways to advocate. You can contact other disability rights organizations and ask them how you can get involved and help. And remember, solidarity. Demanding your rights and never giving up are also very important. Absolutely. We will put a link to NDI s right on our episode page, so people can find it easily if they need help to find it. Thank you for describing that. Well everybody, we so appreciate your time today and it's been a pleasure to hear about your advocacy efforts and the ways that you guys are changing the world. Um, it's extremely impressive. And I was just happy to be the audience and listen to you. Um, we wish you well in all of your future advocacy efforts, and I'm very certain that you will go very far with that. We'll be watching the Senate. Mhm. Keeping an eye on that. Yeah. Thanks everybody for coming. Thank you so much. Yeah. Thank you so much too. Same here. Thank you.