Episode 207: Down syndrome, leadership & advocacy – with David Egan

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

On today’s episode, I’m speaking with David Egan, a leader and eager advocate who promotes the causes of people with disabilities. He worked for over two decades in various competitive employment positions starting in 1998, from a clerk in the distribution center with Booz Allen Hamilton and CBRE, to a community relations coordinator with SourceAmerica. He is the first person with Down Syndrome to serve as a Joseph P Kennedy Jr. Public Policy Fellow on Capitol Hill and with NDSS, the National Down Syndrome Society.

As a Special Olympics athlete and International Global Messenger, David has traveled extensively and speaks to diverse audiences. He’s an active participant with NIH, the National Institutes of Health, with their research projects and represents individuals with Down Syndrome on the NIH Down Syndrome Consortium.

He testified about employment at the Senate HELP Committee in 2010, spoke about human rights at the United Nations in 2012, and he’s spoken at various universities, nonprofit and for profit firms, at small and big events. He serves on various Boards of Directors and volunteers in his community.

David has also received many awards throughout his career. Last year he was honored by NDSS for his legacy, presented with the American Association for Intellectual Disabilities Media Award, and received the Global Down Syndrome Foundation’s highest honor, the Quincy Jones Exceptional Advocacy Award.

As the author of the book, “More Alike Than Different: My Life with Down Syndrome,” he inspires his audiences to see our shared humanity and focus on abilities and possibilities rather than limitations.

David, welcome to the podcast.

David Egan: Thank you.

Carolyn Kiel: I’m really happy to have you here. To start off, what was your childhood like for you, growing up with Down syndrome?

David Egan: I had an amazing early childhood start in life. I was born on campus at the University of Wisconsin in Madison, in 1977. My parents loved me from day one and took me home, rather than sending me to an institution, which was typical then.

I was fully included at the first early childhood program at the Waisman Center, where a kid with autism and I with Down syndrome shared a preschool setting with 10 typical toddlers. The center has grown and now over 150 kids participate and benefit from an inclusive model of early education.

Carolyn Kiel: What dreams and goals did you have when you were young?

David Egan: I always had big dreams. Being the eldest of four children, I enjoyed being in charge. I used to watch C-SPAN and my mother thought that I had the wrong channel, and she wanted to change it. I told her not to change it because I wanted to give speeches like members of Congress. I did not know at that time that my dream would come true.

My dream became a reality in 2015 when I applied and was selected to be the first person with an intellectual disability to serve as a Joseph P. Kennedy Public Policy Fellow on Capitol Hill with the Ways and Means Social Security Subcommittee, and then with the National Down Syndrome Society.

Carolyn Kiel: That’s awesome that you got to fulfill so many of your dreams that you had when you were young.

I’ve learned from reading about you that there was a time when you didn’t always accept your disability. So how did you learn to accept your disability?

David Egan: At age 10, I was preparing to go to the hospital to have my tonsils taken away. I asked my mother if they will also take away the Down syndrome thing. She said, “Down syndrome will stay with you all your life, but it will not stop you from having dreams and being successful.” She was right. Down syndrome does not define me as a person. I’m an individual with unique personality traits, while at the same time, I share physical and health conditions typical of other individuals who have an extra chromosome like me.

Carolyn Kiel: And you have since gone on to do so many different things in your life, and one of those was that you worked for many years. One of your first jobs was at Booz Allen Hamilton. So tell me about your job at Booz Allen Hamilton.

David Egan: Employment is a defining aspect of adult life. It connects us to full participation and inclusion in our communities. It fosters a sense of self worth and opens opportunities for social growth, leading to greater independence. There are many ways to prepare for a successful adult life. I did not go to college as my brother and sisters, but I sought opportunities to become independent and forge a career over time. It all started with internships after high school and vocational training at the Davis Career Center.

The best internship was with Booz Allen Hamilton, an international consulting firm. At the time, the Marriott Foundation sponsored a program called BRIDGES that encouraged employers to have interns with intellectual disabilities explore job opportunities. That internship landed me a competitive job with Booz Allen Hamilton. I worked as a clerk in the Distribution Center for almost 20 years in the same building, first as a Booz Allen staff employee and then as a contractor with CBRE.

My first supervisor was great. She took it upon herself to teach me everything there was to know about being a clerk in the Distribution Center. She believed in me. I also had friends at work. Greg is my friend and mentor even today. He knows me well and has been my role model for many years. He truly cares about me, gives me guidance, and made me feel part of the team.

I was fully integrated in the workplace. I was treated like other employees at work. I received benefits, time off, and an annual assessment like everyone else. I went to compulsory training and participated in All Hands meetings and corporate events. The CEO, Dr. Shrader, has stated, and I quote, “Work provides more than a paycheck. It brings dignity and community. When businesses open job opportunities to men and women with disabilities, everyone benefits. The individual, the company, and society at large.”

Everyone in the company wanted me to succeed, and I was a member of the team, involved in all the activities of the firm. I always say, “I was one of them and not one among them.” In all of my jobs, I had good employers. They understood the causes of people with disabilities. In my view, having a job is important. It gives us purpose. It makes us more self-sufficient and independent.

After the fellowship, I applied and was hired as a Community Relations Coordinator at SourceAmerica. This new chapter in my career allowed me to build alliances among various groups, especially with Special Olympics International. And that meant a lot to me.

Carolyn Kiel: That’s awesome. People just want to feel like they’re part of the team and have those opportunities! So it’s really wonderful that you were able to build those relationships at work.

And also, you currently are a disability advocate, and as we’ve said in your bio and you mentioned earlier, you were the first person with an intellectual disability selected as a Joseph P. Kennedy Public Policy Fellow on Capitol Hill. Tell me about that.

David Egan: In 2015, I applied and was selected for the Joseph P. Kennedy Jr. Public Policy Fellowship. I had two assignments. I first served on Capitol Hill with the Ways and Means Social Security Subcommittee, and then I worked with the National Down Syndrome Society. Both positions provided me with opportunities to learn and contribute.

It was a huge honor to have been selected as the first person with an intellectual disability to serve in this position. It was a historic milestone. I extended the work of other leaders who had paved the way before me. The fellowship gave me the opportunity to learn about the intersection of public policy, disability advocacy, and the political process.

One of the highlights of my assignment on Capitol Hill was engaging in casual conversations. These unplanned meetings were quite impactful as they offered me an opportunity to engage and assert our human and civil rights. I was a reminder to those around me that people with intellectual disabilities do not have to hide, and we are citizens that matter.

Carolyn Kiel: An amazing opportunity. So awesome that you were able to advocate in that way with our government officials.

So you’ve been in disability advocacy for a long time. How did you first get involved in disability advocacy?

David Egan: I think that I was born to be an advocate. My family, teachers and mentors focused on my strengths and had expectations of me. They believed in me. They presumed confidence and focused on my abilities rather than on my disabilities.

My sixth grade teacher discovered that I loved to talk and network, so she would take me with her to raise awareness and do fundraising for Special Olympics. I was given opportunities to shine through Special Olympics and became a Virginia Global Messenger and later a Sargent Shriver International Global Messenger.

Carolyn Kiel: Wow. And in your opinion, what are the most important challenges that people with Down syndrome or with disabilities in general are facing in the United States?

David Egan: We have made progress since the ADA, but we have more work to be done. We have made medical and social advances. But we’re not always understood and fully included as individuals who matter and contribute.

Individuals with disabilities and those of us with Down syndrome are living longer. But as Officer Spock says, it’s not enough to live long, we need to prosper. I’m a Star Trek fan.

In the past two years, I have been very sick after COVID and Long COVID. I realize that our healthcare system is not well prepared for dealing with mental health issues. While I am an individual, I also share health conditions typical of those with Down syndrome. We lack centers and clinics that have doctors and nurses specializing in understanding our unique needs.

Carolyn Kiel: Yeah, those are really important issues impacting people with disabilities today and so important that you’re, that you talk about them.

And you’re also an athlete. You’ve played a lot of different sports, you’ve won medals from competitions, including the Special Olympics. Tell me about that.

David Egan: I was involved in sports in our community as a young child with the Little League Baseball team and swimming in our neighborhood pool. Special Olympics helped me gain confidence, and I started with track and field in elementary school and then with swimming, where I was able to swim the individual medley thanks to Parker Ramsdell, who was a middle school kid 25 years ago. He taught me all the strokes. He volunteered his time and was my buddy. We are still friends, and I was invited to his wedding.

Sports, and especially Special Olympics, play an important role in our lives. I have hundreds of medals, but Special Olympics is more than medals and competition. I’m inspired by the founder, Eunice Kennedy Shriver, and her son, Tim Shriver. She believed in individuals with intellectual disabilities. She assumed competence. She told the athletes at the first Special Olympics Games, and I quote: “The right to play on any playing field… you have earned it. The right to study in any school… you have earned it. The right to hold any job… you have earned it. The right to be anyone’s neighbor… you have earned it.”

Carolyn Kiel: Yeah. Assuming competence and again, belonging in the community and wanting the same things that so many other people want is so important.

What kinds of changes do you want to help lead to help improve the lives of people with disabilities?

David Egan: I always volunteered in research since I was a baby. And I continue to participate and promote the work that NIH and the National Down Syndrome organizations are pursuing. I have a campaign called REACH UP Down Syndrome: Research, Education, Advocacy, Core Health, You Participate. While the research is important, individuals with Down syndromes, families, and care providers should educate about the condition. We should not be excluded from clinical trials or any medical interventions. I want to promote Down syndrome clinics in every state. I want to make sure that healthcare professionals specialize in our condition and provide unique resources for our well being, both physical and mental.

Carolyn Kiel: Really really important work that you’re helping to do. How can people learn more about the work that you do?

David Egan: Read my book, “More Alike Than Different: My Life with Down Syndrome.” And check out my website at DavidEganAdvocacy.com. You can learn more about me on the site that my brother created for me. You can also contact me from the website if you need me to speak for a cause or an event where we can make our world a better place for all of us.

Carolyn Kiel: That’s awesome. And I’ll put a link to your website and a link to your book in the notes of this podcast so people can click on it from there.

So yeah, David, it’s been great talking with you today. Is there anything else that you’d like our listeners to know or anything that they can help or support you with?

David Egan: Choose to include. Focus on abilities and discover our shared humanity. We are more alike than different.

Carolyn Kiel: Yeah, absolutely. Thanks again, David. I’m really grateful that you were on my podcast and thank you so much for sharing your story on my show.

David Egan: Thank you.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend, give it a shout out on your social media, or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at Beyond6seconds.net. Until next time.