DAVID EGAN
Media
Nicki Pombier: I noticed before, I think you said video, but I just want to be clear, I’m sorry if I wasn’t before, this is just audio, so it’s not video. It’s just the audio. But maybe I could take a couple photos before I leave.
David Egan: Of course. I’m always big about that. It doesn’t bother me, it doesn’t freak me out. And a lot of self-advocates always like to be in front of a camera for some reason. Me? I have no problem whatsoever. You want to put a camera right in front of my face? Okay, I’m ready!
Nicki: You mentioned the media before, that they don’t understand or something like that.
David: Well, I think they try to understand, but sometimes the way they do it can be a little bit, how to say, it may not come out the right way. Sometimes people in the media are expected in the profession to report the news. Among people with disabilities, they try to be positive, they try to be themselves, and they really want everyone out there to know their story, here’s what I have done, but sometimes in the media, they may be portrayed differently. I don’t mind the media, but when they ask you questions, you don’t know your response and how it should come across and the effect of it could really get someone, because if it doesn’t come out right or straight or those kind of things.
Nicki: Does this feel a little different, this kind of interview, than the media?
David: Hard to say. It really depends upon the profession that you’re in. If you haven’t been around for a period of time, just to get to know them better, and just put the camera down for a moment and say hey, we don’t need the camera, but if you have the camera, watch out, because there’s going to be people out there that will react or respond—I don’t know the right words to say, that’s not my belief, you should not have said that, that’s not how the disability community wants to be represented. We want to be represented as who we are, the way that we want to be portrayed. I think that’s something that we need to do better in.
One of the Lucky Ones
David Egan: Special Olympics does something called Capitol Hill Day. We’re meeting Congressman and Senators. It’s an all day event. There was an appointed committee called the HELP Committee that was chaired by Senator Harkin.
Nicki Pombier: From Iowa.
David: From Iowa, yes. I was at the right time, at the right place, where they asked me, Say David, do you want to testify on the Senate Health, Education, Labor, and Pensions Committee? I said, Yeah. I’d like to do that. Talk about my job. My job at Booz Allen, and the support it has for Special Olympics and the work that I do. I was part of that panel of experts. Booz Allen Is a consulting technology management firm, and I’ve been with that company for about fifteen years. Started as a high school intern. Soon as they catch on with the stuff that I’ve been doing, away from my work, away from the work I do for the company, they took that on too, and that’s how they started a partnership with Special Olympics. In the year 2000, I travelled to the Hague. Tim Shriver talked about the partnership that Booz Allen has on an international level. Global. I kind of put it this way: there are now companies today that support causes. Now we want to know what we can do to have jobs. And you can support causes, that’s always great to do, but hiring people with disabilities is the next task, and how to accomplish it, and I think my experience that i had when I started really helped along the way to get to where I am, working in the mail room to represent the disability in all aspects. So I participate in all-hands meetings, I participate in corporate events, I get an annual 360 assessment. I’m kind of one of the lucky ones, not to get a paycheck, but just to know what it’s like to be a paid staff person and to be part of a culture of what Booz Allen does.
Parker
David Egan: I’ve been very involved in Special Olympics at a very young age and track and field. But I wasn’t much of a runner, so I moved out of track and field, and I became a swimmer. Ever since, I never stopped swimming. Swimming was one of my favorite sports, and I’m still good at it. I could tell you, I’m no Michael Phelps.
Nicki Pombier: I think only Michael Phelps is Michael Phelps.
David: I had to say that, for those who are listening who are from Maryland. I’m just kidding around. I’ve been a great swimmer myself too, and I’ve done the individual medley, all four strokes, butterfly, back, breast, and free, without stopping. I had a really great friend who was a volunteer out of high school that wanted to coach me in swimming, and his name is Parker Ramsdale. When we trained ourselves in swimming, he has me doing 1000 laps in the pool, and I didn’t like it. What are you trying to do to me? At the same time, it was something that I had to do, something that keeps me going. He’s been like a brother to me. He knows my family and my family knows his family, so we have that connection. At first, he thought he was just doing a high school project, and it became something much more. There are times that we do things on our own, sometimes we go out, spend time, you know, at a restaurant, just chatting along and having a great time and enjoy what we do. He’s been a really great friend.
The Way that the World Should Be
David Egan: I’m putting out a challenge: what we can do to change public opinion and public policies towards intellectual disabilities? How we want to do that, I leave it up to you, but I want to be part of that conversation and that dialogue, and I think people with disabilities should be there. It goes without saying—I know a friend who’s an athlete himself, who went on TV shows about this, our work that’s being talked about.
Nicki Pombier: Rosa’s Law?
David: Yeah, actually. Rosa’s Law was a law passed and signed by the President of the United States, all because of this one young girl and her family. The state of Maryland. That was started there, and then everybody else caught on. Boy, let me tell you, it’s been a whirlwind, people talking about, yeah we should support this or we should not support it. We don’t want to exclude anyone else from the conversation. We want everybody to know. So it’s not just Down syndrome organizations, it’s all of them. We’re at that moment now, we’re crossing the finish line with the hope that we can change public policy and public opinion about those with intellectual disabilities. And let me tell you, for anyone out there that wants to know why we’re doing that, it’s because we want to change the hearts and open minds, the way that the world should be, rich in understanding and friendship. That’s my challenge. I want to put it out there.
What Else Can We Do?
David Egan: So I hope that this interview does something for many others, so they can say, It’s okay to have a disability. It’s okay to be different. It’s okay to be who you are. I think I’m proud no matter what I do, no matter what award or metal might be given to me. Having awards or medals are great. They really are, but when you look at it, you’ll probably say to yourself, what else can I do? Is there anything I have not done before? And many people will say, Yeah! I want to do that. I want to expand ourselves, we want to improve ourselves. We want to go the distance and see how far we can go. And so, I look forward to a day where I could just be more out in the public, find out what else we can do with people with disabilities.
You Can Do All the Stories You Want but We Want to Do More
David Egan: My belief in the disability community, to the heart and the core of every organization in what we do, is that we all want to be bipartisan. In a world of politics, people with disabilities should not be used for politics. We all have been truthful, mindful of being bipartisan. But we know we cannot do this without the many support groups out there, and we do want the help of the federal government and our state government to be involved in what we do. Don’t tell us how we should run our lives, but we want them to be a part of it. We want them to know why these things are happening. Why do we have walls that divide people with disabilities, or you call them obstacles, barriers, I don’t know how you want to call them. Let me tell you, when you put one up, there’s no other way around it. You can’t go over it, you can’t go around it. So that’s why I feel like, why are we here? You can’t do anything about it. I think that’s where we need to be in the conversation.
Nicki Pombier: I want to hear more about the conversation, but first can you tell me what you think some of those walls are? Just examples of them?
David: They can be anything. It can be a negative stereotype toward a disability group. And that’s what we want to change.
Nicki: You’ve said this a few times, and it gets right to the heart of what I’m interested in, but the idea that you want to be a part of the conversation.
David: Actually, a larger conversation. Because if you're not part of a larger conversation, we can talk and talk and talk, but nothing’s going to get done. And we want to make sure that something is being done. So you can do all the stories that you want about self-advocates, but we want to do more. Yes, self-advocates like to talk a lot. They like to be behind a microphone. But what is it like for an advocate to be a board member of an organization or being a valuable asset and a resource to any organization? It doesn’t have to be Down syndrome. So that’s my challenge.
Nicki: Well, that’s my question too. What is it like to be a board member? You’re on the board of directors for the Down Syndrome Association of Northern Virginia, right?
David: Mmhmm.
Nicki: What’s that like for you?
David: I think it’s great. At first, the DSNV basically was pods, parent organizations. Who we are now is much more. We’re DSNV. And even though we have a parent support group, it is a committee, but no more an organization. I know that’s a very sensitive one to talk about, because parents, how they like to do things on their own, supporting their children. DSNV has programs for parents, for families, but the rest of the organization has expanded to other groups like government affairs, self-advocates, advocacy, you name it. We’re now doing all that. And I hope that somebody self advocates, I hope someday they can be on their own, you know, just like everybody else. And those were some of the things I’ve been pushing.
Nicki: Were you the first self-advocate on the board?
David: Yes, I did. And then, I was part of a process. They were going around to see who’s interested to be a member of the board. I know I was one of many people being interviewed for the position. The great work of Lisa Roady and Phil Publican, if I can say that. Because they were the two that really started it. And everybody else wasn’t really sure if we wanted this. But then we found out, maybe we should, and what it’s like to have a self advocate to be a board member. So that’s what started it for me, personally. And then it went on to another self-advocate, and they wanted to do the same thing. And the work she does is great too. She can tell you these things herself. So we can keep encouraging that and let the world know that we’re here and we’re not going anywhere.
Good Help
Marc Egan: So in Athens, Greece, David and I worked as volunteers. We’d be scheduling and VIP guests processing. So we were putting all the itineraries together, getting all these people like Matumbo, who played with the 76ers—basketball player—
David Egan: Sam Perkins.
Marc: Sam Perkins, who David’s met. One of the guys who’s supposed to show up is a movie star who has Down syndrome. Eddie--
David: Barbanell.
Marc: Eddie Barbanell, yeah. Eddie’s plane is running late and Eddie was supposed to do the commemorating the—
David: The Hilton.
Marc: —the Hilton becoming a partner of Special Olympics. So at the top floor of this Hilton hotel, Hilton’s putting everybody up, and Eddie can’t go. We’re like, who’s going to, we need an athlete rep to bring all this together and MC the whole thing.
David: Last minute.
Marc: Last minute thing. I said, Hey, my brother can get up there and talk and do whatever. So they’d developed a whole big book of—David’s gonna come up first. And then this page. And then this guy’s gonna say something, all the important people, they have their things, their notes on there. I get him all ready, he’s in his suit and tie.
David: Before you go on, when this was happening, one of the celebrities that was there was Michelle Kwan.
Marc: Yeah, Michelle Kwan. So David gets up there and I’m a little nervous. I’m not dressed up. I’m still in my getup from volunteering. And David’s up there, and I guess that huge book, I had put David’s page up there, but somebody had gone up or something, and it flipped to the next page. So David starts talking: I want to thank everybody for being here, blah blah blah blah, on behalf of the Hilton, I’d like to thank you all. And I was like, huh. He got recruited by the Hilton? He’s working for the Hilton now? I’m thinking to myself, and everybody’s looking at me, and then the lady, who I kind of convinced, you know, My brother can do this, don’t worry about it. She was all flustered, you know? She kind of trusted me to make this happen. I don’t think she’d ever met my brother and knew that he could speak like that. She’s like, what is your brother doing? What is going on?
David: I’m supposed to be introducing Michelle Kwan and Tim Shriver.
Marc: And the Hilton International. And so he’s reading it, and it sounds like he’s working for Hilton. What is going on. I’m like, Oh my gosh, it’s the wrong page. So I run up there, and David, he just makes a joke about it. He goes, Sometimes you just can’t get good help around here. And so I get up there, he just brushes it off like it’s no big deal. I’m sweating, it’s already hot in Greece, it’s the middle of summer.
David: This was like a—
Marc: Press conference.
David: An international media presence.
Marc: They’re translating it in different languages, that his brother’s an idiot.
David: I say to myself, Ok, this is now the actual speech.
Marc: And the best part was, Tim Shriver gets up and just off the cuff, Tim obviously is great at this, Tim just goes, what David just did is amazing for anybody, disability or not, to take a situation where things aren’t going right and turn it around and acting natural and getting the job done. This is what Special—and he tied it all in. It was awesome. We had our little splash of brother duo.
David: And then also during that time, when Tim saved me a little bit, Michelle Kwan put her hand to her mouth and was kind of like, was giggling about it. I understand.
The Brother Duo at Temple Poseidon
Nicki Pombier: What are some of your other favorite stories?
Marc Egan: On that same trip, we convinced another person—talk my way out of things, into things—we convinced this New Zealand documentary film crew—
David Egan: Called Attitude.
Marc: Attitude Pictures, we convinced them to say, Hey, you want some footage, you’re doing a whole documentary on the Games—
David: The World Summer Games in Athens, Greece.
Marc: I told them, Hey, I heard about Temple Poseidon near here—it was not close at all. They were like, It’d be really great to film there and do all these things. So we drive all the way out there, it’s a couple hours, the taxi ride is super expensive. And we get out there and then it turns out you can’t film on the ruins without permit. He kind of had like a—it looks like a normal camera, but it’s a handheld still camera. They were like, no no no, not professional. He goes, this, then, you know. So we’re getting like half the speech done, and David’s up on a rock, and he’s being like a Greek orator.
David: “I have a dream!”
Marc: I have a dream, and all that. And then the lady comes over, this Greek lady. She barely speaks English. She’s like, blah blah blah blah. And then David, I guess he didn’t understand, and he just goes, What?? You don’t like Special Olympics? Get out of here! You gotta be kidding me! David’s getting all fired up. I’m like, man, you need to calm down. It’s not like that. We still got it done. We got the sunset in the back, the silhouette of him, he finished. But those people, they were super cool.
David: Yeah, they were.
Marc: Laid back, but professional. They were very cool.
The Magic Happens in the Field
David Egan: I kind of felt like maybe we could do interviews in other states in the US or go exotic and go international.
Nicki Pombier: If we could find somebody to pay for it, I’d love to do that.
David: But I think potentially you tell me that you’d like to be in the field, and I think that’s the right thing to do, be out front. Be with the people. Because that’s where the magic of advocacy happens. You get that when you talk to people, their face lights up, they get this great sense of, this is happening to me, people are hearing us. Us in the sense of, us as a country, us as a global movement, that’s made great strides over many many years to change all the naysayers to correct the misinformation that’s out there about people with disabilities.
Nicki: What I hear you saying is that it would be awesome if you and I could be in the field interviewing advocates so that we could record their stories in a way that corrects the misinformation that’s out there.
David: Yes. They myths, the stereotypes, anything, you name it.
