1 Captions by Julie Taylor. Edited by Antony Vlug. www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2017 (UPBEAT MUSIC) I see a lot of value in my life and` and other people too. I value people with disabilities no different than those without a disability. When you encounter individuals with disabilities, whether they're in school or whether on the job or whether in the community having a great time, having great friends. I think that's` that's what we all want. I think Gandhi says it best. 'Be the change you want to see in the world.' (GENTLE PIANO MUSIC) Growing up, um, it was very hard for` for me to accept my own disability. When I was about 9 years old, I was going to the hospital to have my tonsils taken out, and I asked if they will remove my Down Syndrome thing too. I used to ask my mother, 'When will I get rid of this Down Syndrome?' She would say, 'It is something that stays with you all your life. 'It does not stop you from having dreams and being successful.' She was right. Having Down Syndrome is not an obstacle to success. There may be challenges, but there are also unique gifts and opportunities. Since I was born 39 years ago, a lot has changed for people with Down Syndrome. In fact, in some countries, 100% of people with Down Syndrome are terminated. Also, as we get older, most of us, we get Alzheimer's. So, what is the future for us? I'm gonna start by talking to my parents about their own experience when they had me. There you are, little guy. And that was your baptism ` was at home. So, when you were born, they told us, you know, that people with Down Syndrome can't do much. In fact, some family members says if you wanted us to put you in an institution. You know, most Mom and Dad, being researchers, we were more thinking about 'What's wrong? 'What should we fix?' And then after that, I decided, 'No. There's nothing to fix.' It was difficult because we were students at a university, but, you know, we made a decision that we were going to do, uh, whatever we could to, um` to, uh, love you and take good care of you. So, we` we worked hard on social skills and on communication skills, because in the beginning, you did one-syllable words. You would say 'bah' for bottle,... (CHUCKLES) ...and 'bah' for Dad, and... Months and months of effort to get you to say two syllables in a row. But you wanted your bottle, so you tried very hard. (CHUCKLES) What I discovered with you, anyway, was that` (CHUCKLES) that you had plateaus. You` You could surprise us at one time and` and do something, and it was new and different, and` and we would try to build on that, but there would be a plateau. John has a bachelor's in psychics, and then he did his PhD in, uh, nuclear engineering, and he's` He calls himself a rocket scientist. So, he's pragmatic, but he has a vision of the universe. My PhD is in education, and my bachelor was in philosophy, so I'm more of a thinker. I think the biggest change was thinking of cognitive` uh, being successful in school and intelligent and passing tests was important. I think it toned that down quite a bit for both of us. You know, that, uh, life is more than just, uh, cognitive, uh, success. As far as what your life was going to be like and what I expected ` I expected that you would have a job. And I expect you would` you would be employed, and I expected that you would, uh, not need to be taken care of all your life. You know, if we're not there, and` and then who's to take care of you? And you're a burden on your siblings, and that's not a good thing either. You have to be able to take care of yourself. (LIVELY JAZZ MUSIC) There are lots of services that exist in United States for children with disabilities, but both John and I felt like if David can have a job, we wouldn't request anything from Social Services. He was very lucky. He was an intern in high school. The woman who was the supervisor liked him and says, 'What about a job here?' And one of the conditions was he had to take the bus on his own because I was working, John was working, so David had to be self-sufficient. (JAZZ MUSIC CONTINUES) My job as a distribution clerk at CBRE. It's a global real estate company. I enjoy my job. I just show up, and they tell me what they want me to do, and I` and I do the work. How are you doing, Dave? I'm doing well. All right. I've got your next task ready for ya. Well, you do. Hand wipes, and these flyers you can hang up on all the floors. Sure. I can do that. He takes care of all the` the paper stocking; the coffee; makes sure that everybody has the supplies, the material that they need to do their daily job. Always on time, always energetic when he gets here, always, uh, looking for the next assignment to, um, you know, keep everything rolling for us. I have been with Booz Allen for the past 20 years. And some of these awards I have here, they wanted to recognise my achievements, um, at the workplace. If you want to look over here, I have many medals. Some are gold, silver and bronze. I have competed in many variety of sports in the Special Olympics. But these trophies here is when I was swimming. I have soccer trophies ` when my dad was the coach. And then also some baseball trophies as well, too. Um, this one right here ` this is when I travelled, um, to the Netherlands, and this was a` the first Athlete Congress in 2000, where I gave a speech there in five different languages. I think David has achieved amazing things in Special Olympics. First in his sports ` he excelled in his sports ` and then he moved into leadership positions as a Global Messenger ` kind of changing, uh, the way people think about people with disabilities. Now he says to me, he says, 'No, Down Syndrome doesn't define me.' You know, 'I'm David Egan, 'and I am David Joseph Egan.' And he's very proud. And that, I think, Special Olympics gave him the sense of confidence, the sense of, uh, 'I can be a star. I can be number one.' With the work that I do in advocacy, I can relate to families who have younger children and those who are older adults ` to find their own path, and just let them know that they're not alone. And it's... And, you know, whatever disability you have, just` just accept it for what it is, and just, um, keep showing that people with disabilities do have the abilities to, um` to be understood, um, to be active in their community, and not limiting yourself. OK, David. Let's, uh, prepare the questions for NIH, you know. So, uh, what do we`? What do you think we should be asking them? Tell us about the research on Alzheimer's? Is that a good one? Yes. Today, we're going to go to NIH to learn about what the future offers ` you know, things that will help our kids and other people to have better lives. I think we're ready. We have everything we need here. Sure. OK, so let's go. Let's move on so we can arrive at NIH on time. This way, David. (ACOUSTIC GUITAR MUSIC) I want to find out what the medical and scientific community are doing about Down Syndrome studies and what should I be worried about in the future? (ACOUSTIC GUITAR MUSIC CONTINUES) Scientists at the National Institute of Health are going to tell me about their ongoing research. I am looking forward to learning about the new advances in our future. It's nice to see you. Good to see you. Good to see you. It's been a while. It has been. Hi, David. So nice to see you again. Thanks for having us. Hi, David. So good to see you. Hello. Thank you. Thank you for being here. Can you tell us about the projects at NIH that you're working on? Well, NIH is supporting a lot of research on Down Syndrome, trying to understand the condition from babies all the way up in to aging. It turns out that over the last 30 years, the average lifespan of a person with Down Syndrome has doubled, so that now people are living into their 60s and 70s with Down Syndrome. There's one project that the National Institute of Health is engaged in. We're really trying to look at adults between the ages of 30s, 40s and 50s and study them over at least five years, looking at different biomarkers to try to predict which one` which of those individuals with Down Syndrome are going to develop Alzheimer's disease. There's an increased risk that adults with Down Syndrome will develop Alzheimer's disease, and so we want to try to be able to understand better what` what those risk factors are and what ways we might be able to treat them. There's some research to try to understand whether increasing exercise and making sure that, um, people live healthy lifestyles might be helpful. There are, actually, some new treatment trials, actually, looking at particular drugs that target the immune system, and they're looking specifically in people with Down Syndrome to see if those might help prevent the later on` later onset of Alzheimer's disease. So it is important for me to continue with my exercise and sports. That's great. Um, thank you very much. (INDISTINCT CHATTER) MAN: Yeah, man. You just warm up. All right. Follow me. WOMAN: Can I do one? (WHOOPS) That's how it's done. My team name, that I play basketball with, is called the Cannons. WOMAN: And what are we doing today? We'll be playing basketball, and he's a good friend of mine. Um, number 43, and he's one of my teammates. Always want our guard on him. If we need to collapse back to the lane, he's not shooting outside shots and hurting us, right? Go to the face! Go to their face and take the ball from them. That's your ball! Come on, Cannons. Hands on three! Two, three, break! (ALL CHEER) (WHISTLE BLOWS) (INDISTINCT CHATTER) David! KATHLEEN: Oh, the Special Olympics has done marvels for David. It gets him to do sports, and that's very important for someone with Down Syndrome. And I think sports also helps the brain; it helps cognitive, uh, alertness. (CHEERING) His dad is the one who watches the most, you know, cos he understands sports. I'm not too good in sports. (APPLAUSE) His brother helps also. They play unified sports and softball, and his brother's the coach, and they play together. Oh, good job, David! (CLAPS) Yay! David! You're all sweaty, but I kiss you. (BOTH LAUGH) Congratulations. Good job. TEAM CHANTS: David! David! David! David! One, two, three. Cannons! (ALL SHOUT AND CHEER) Maybe you could show me how to place the silverware? Oh. OK. OK, let's` let's put the silverware, David. Get me the forks. Usually the family comes over for dinner on the weekends, and so we're just setting up the table for a family dinner. MAN: Hey, David. Hey. How are you? Good. What's for dinner? Um, I'm not sure what` I'm not sure what's on the menu. It's good you're here. Did you have a good soccer` basketball game? Yes. Basketball game went very well. High five. Aw! Yeah! (LAUGHTER) Hello. Hello. How are you? Good. How are you? Very well. David is a big reflection of my parents and their values. They were the driving force for my brother's success in that they helped discipline my brother. They helped, inch by inch, ensure that he spoke correctly, he behaved correctly, he learned skills so he could be independent. Now that I know David, I would say he's a blessing. Who wouldn't want a child like David? At the same time, it's not easy. A child with disability takes time, but it's not necessarily difficult; it's just time-consuming because you have to follow every little thing. Hey, cheers, you guys. What are we celebrating today ` David? David. We're celebrating David. (GLASSES CLINK) It's all about David. Did you win? It was amazing. The hardest part for me is feeling guilty ` feeling guilty that I, uh` I don't do enough for my brother. Right? Like, he can't drive; he can't do everything for himself, and I feel a little bit selfish and a little bit, (SNIFFLES) like, I could do a lot more for him. I think we do really well with the big concepts with my brother ` acceptance, inclusion, love a-and all that ` but it's the day-to-day piece of me not being there, and as my parents have become older, I worry about what the future is, and that will be the time that you have to step up to the plate and really make good on the promises that you've made to your family ` to say that you will contribute and take part in` in what's needed to be done. (FOOSBALL BALL RATTLES) I can't get it over. (GROANS) So, tomorrow you're gonna go and meet with congresswoman Cathy McMorris Rodgers on Capitol Hill. That's pretty cool. Yeah. We're gonna cover different subjects. Maybe you'll talk to her about the, uh, IDEA` the IDEA Act. Oh, yes. Yeah. Individual Development Education Act. Uh, yes. Tell her that I say hello when you see her, though, by the way. Sure. I will do that. I am the first person with an intellectual disability to be the Joseph P Kennedy Public Policy Fellow. I work on Capitol Hill, where congressional members make decisions, um, that could impact the lives of people with disabilities. I work with the Raising Means committee on Social Security, and I've done a resource guide called #DSWORKS. Uh, intellectually, I think the experience at Capitol Hill gave him a boost, because he had to do more than just a routine job. Uh, the mailroom where he was, was more routine. Uh, so he blew my mind, because I` in fact, he wanted to do those things. I didn't suggest to David, 'You should become a JP Kennedy Fellow.' He follows the news. He follows` Uh, he looks on the internet. He surfs for things, and` and he said, uh, to both of us` He said, 'I want to help other people to be successful.' (CAR DOOR SHUTS) Hey. How's it going? Good. How are you? All right. Good to see ya. What's up? Doing well. Want to go inside first or do you just want to just head out? Uh, maybe we could head out. Sure. I've not been to this park before, so show me where` Oh yeah. I can definitely show you. David Thomason is my mentor, and he will help me to be more effective, and it's something that reminds me how special Special Olympics is. David works very hard to spread the message of inclusion of all. David seems, uh, very interested in` in being an agent of change in that direction so that we see people first for what they can bring to the table and not what their limitations may be. Tell me about this meeting you have ` Tuesday, is it? Uh, yes. I'm going to meet with Congresswoman Cathy McMorris Rodgers. She's a friend. You've known her for a long time. Yes, from Washington State. Yeah. And I think, um, she also has a son, named Cole, who has` also has Down Syndrome. So, David, you've` you've had all this great experience as a Global Messenger and as an advocate with a variety of organisations, and you've served on the Hill as a JP Kennedy Fellow, and now you` and you have this relationship with a champion on Capitol Hill with` with, uh, Congresswoman McMorris Rodgers. You want to affect the future. What do you plan to do? We have had great conversations, great dialogue, about, um, what other things we can do in the disability community that we haven't thought of before. That's, like, the foundation, and how we want to go from there, cos if it's just, like, employment, education and other aspects that we have not even considered. I've known many people with Down Syndrome who have enriched lives in` in multiple ways, and David certainly did that. Early in our work with David as one of our Special Olympics Global Messengers, we were preparing for a International Torch Run Conference here in Northern Virginia, and we met with a woman who was an expectant mother. And, um, we didn't know this, we` we` we probably worked with her, you know, several` over a period of several days, and toward the end of it, she said, uh, and David was in that group, she said, you know, um, 'You know I'm expectant, but you didn't know that I've been told that my child might have Down Syndrome.' And she said, 'I was trying to decide...' (SOFTLY) Sorry. She said that David's work, and the work that she had seen there, inspired her and guided her decision. She wasn't certain what choice she was going to make, but she` it was clear after that, that seeing and, uh, being around David just convinced her that there was no question. (GENTLE, REFLECTIVE MUSIC) OK, David, you are going to get ready to go downtown on Capitol Hill and meet with, uh, Congresswoman Cathy McMorris, so let's get you ready. OK. OK. Here, let's see this tie. Oh, you look handsome. Look good. Thank you. (CHUCKLES) OK. Go look in the mirror. Whoever has a child with a disability, my advice ` you take it one day at a time, and, uh, you believe in your child. If you begin looking at what they can do, it changes completely. It's important that we believe that kids with Down Syndrome can do things. Look at David; he's living his dream. His dream is to make changes in the world. (GENTLE, REFLECTIVE MUSIC CONTINUES) Congresswoman Cathy McMorris Rodgers is one of the most important women in Congress. She plays an important role with disability policy, and I want to ask her what her plans are for us. (SOFT KNOCKING ON DOOR) David! Yes. Wonderful to see you. Great to meet you. Thank you. Oh! How are you? I'm doing very well. Good. Come on in. How are you doing? David, you know, we really need people like you. Um, you've been the trailblazer ` you're the spokesman for Special Olympics; you've been` uh, you've had the fellowship here on, uh, the Ways and Means Committee; you've been involved in so many advocacy groups; and just` It's tremendous. Uh, there's nothing more powerful than hearing from you directly. Well, it's great, and I get a lot of responses, you know, when I go around giving speeches and presentations and allowing them to know all the things that you highlighted. Well, I-I don't think there's anything more powerful than the self-advocates. Oh, absolutely. You know, those that can tell it from first-hand experience. Yes, it's` it is, and I think from that first-hand experience, there's a lot of potential... Yes. ...in the community that we're in, that we represent, and that you represent too, as well, because I know that you have a son, Cole. Yes! The policy is very much active. You` You are my hero, as I think about Cole. You know, so Cole's now in, uh, fourth grade, 9 years old, and, uh, just brings me so much joy every day. But I do give a lot of thought to, 'OK, so what kind of a` what kind of a` a job is he going to be able to` to do?' And, uh, we have great programmes. I'm grateful for early intervention and the K12 system. And mainstreaming kids with disabilities now, I think has made such a huge difference. But that independent living and being able to go to work. Yes. Uh, there's still` There's still a lot of work that needs to be done on policies,... Yes. Absolutely. I agree with you. ...and on these programmes, so that, uh, we open up the opportunity for those with disabilities to work. Well, there is efforts that we've been building upon, like what, um` um` that we have discussed, on what's the ABLE Act and how to go from there. And I think that was a great solid foundation to build upon that, and from that, there's multiple issues that will cir` um` circulate more legislations that would be needed, um, from our United States Congress. It took us, I think, seven years to get the ABLE Act passed,... Yeah. ...and we had tremendous support in the end, uh,... Yeah. large` large majorities in the House and the Senate, and, uh, as you said, it's really important that we continue to build upon that work that has done. And I think a recognition that there's a lot of people with disabilities that want to have` they want to have more opportunities; they want to have the opportunity to live independently and to work, and to be really defined by their ability and what they have to offer. There should be more people like me doing those things. Yes. Absolutely. And I-I-I` for that, I want to thank you for, um, um, making this possible for me and many others. Oh, David. Thank you for all you're doing for my son Cole and millions of others, uh, like him and around the world. Yes, and it's great to have a media crew all the way from New Zealand to know what we do. Isn't that amazing? Yes, it is. (REFLECTIVE MUSIC) David has achieved ability to be a leader. He's a leader in the community. He's a leader and a trailblazer in competitive employment, and I am very proud of him. Out of the four children we have, you're` you're the one that` that turned out to be the most remarkable, because you touch people ` touch their heart, touch their soul ` because you can do it, because you're one of them,... Mm-hm. ...not one among them. Yes. You're not` You're not just tolerated; you're accepted. Right. And I think that that has come a long way in` in our` in our life together. Mm-hm. Together. You and me. (REFLECTIVE MUSIC CONTINUES) With the work that I do and how it has shaped my life, and` and I hope that it can shape your life too. (CHEERING AND CLAPPING) KATHLEEN: Oh, good job, David! I want to be a constant reminder to many people that the future is now. Sometimes things are not always easy, but, you know, we always have to continue to work on allowing people to know that we're here and we're not going anywhere. You have to keep it up now. (CHUCKLES) Yeah, pretty much. (CHUCKLES) So, have we done a good job, you think? I think so. We are good parents? I think so, yes. What else would you like us to do? Good? What do you mean 'good'? Do we get an A+ or A-? I'd rather not say. (LAUGHS) Captions were made with the support of NZ On Air. Copyright Able 2017