Q&A: Vienna Resident's Memoir Empowers People With Disabilities

VIENNA, VA — Living with Down syndrome hasn't held Vienna resident David Egan back, and he doesn't want stereotypes to define other people with disabilities either. That's why he wrote a memoir showing how he has thrived in life by focusing on his abilities and advocating for himself and others.

Egan is a longtime Vienna resident who published his book "More Alike Than Different: My Life with Down Syndrome" with his mother, Kathleen Egan, in September. While Egan has given many speeches around the world advocating for people with disabilities, the new book tells his story in memoir form. "More Alike Than Different" details his experiences in life, from feeling included in elementary school to working as an adult and becoming a national and worldwide advocate for people with disabilities.

He has held various positions, notably being the first person with an intellectual disability to become a Joseph P. Kennedy Jr. Public Policy Fellow. That role included work on the Ways and Means Social Security subcommittee on Capitol Hill and with the National Down Syndrome Society. He has also been a Special Olympics Sargent Shriver International Global Messenger and involved with the National Institutes of Health Down Syndrome Consortium. As an advocate, Egan has delivered speeches to audiences around the world. He works as a community relations coordinator at Vienna-based SourceAmerica, which works to promote employment opportunities for people with different abilities.

To mark the release of his new book, Vienna Patch conducted a Q&A with David Egan and his mother, Kathleen. We asked about the new book, his work and advocacy, and what it's been like growing up and living in Vienna. For more information and places to purchase his book, visit davideganadvocacy.com.

Tell us about your new book "More Alike Than Different" and what inspired it.

My godmother has been asking me for many years: "when will you write your book"? I am very thankful for her motivation and for so many who believed in me and had expectations of me. However, that is not the only reason why I wrote the book. There are times that things happen that we do not expect and times we must make our voices heard for ourselves and others. I call those times "Opportunities." They are events that open doors. This book is that moment when a new opportunity came up for me to speak up for myself and my fellow individuals with Down syndrome and others with intellectual disabilities.

One unexpected step and opportunity on my book journey was when my brother Marc created a Google website for me many years ago and then a friend of his, saw it and upgraded it to a more professional look. If you have never been on it, please check it out – go to davideganadvocacy.com. There are many articles and some fun videos. There is also a contact page. This is what got me seen.

So with that website two years ago, I got a request on my contact page to be interviewed by Paul Eder, one of three authors of the book "Firestarters: How to ignite your own life." We spoke on the phone and he told me that he had a young child with Down syndrome and he found me on the internet. He thought I may be a Firestarter: an instigator, innovator or initiator. After two phone calls, he featured me in his book with 40 other people, including CEOs and entrepreneurs. He identified me, unsurprisingly to my family, as an instigator who breaks down barriers. When his book was published, I suggested that he and I give workshops to help individuals with Down syndrome and their families discover the fire in them. So we did two successful seminars and stayed in touch. His co-authors became interested in me and recommended that I should write my own book, and they would help me with writing the proposal and getting a publisher interested in the book. That is when the fire was ignited to get started.

The second part of the journey was sitting down to organize my thoughts and decide what we needed to write. I was in charge of organizing the content. The book is a memoir with a message in each chapter. The content is based on my life experiences with family, in the neighborhood community, at school, in sports (especially Special Olympics), in the workplace and pursuing my dreams to influence public policy and becoming an advocate for people with different abilities. I also did not want to brag about myself, so I asked friends and family to share their thoughts and memories

Aside from publishing the book, what other work are you doing now? How do you balance work and family life?

I am fully employed with SourceAmerica, as a Community Relations Coordinator. Source America’s mission and business solutions are to provide meaningful employment choices for individuals with disabilities. Lately, I have been busy with multiple webinars working with a variety of non-profit organizations and businesses that promote the employment of people with different abilities. During this month of October, which is Disability Employment Awareness Month and also Down Syndrome Awareness Month, I will again be fully engaged in several virtual advocacy activities while in the past, I would have traveled and had in person speaking events. It is a month long celebration.

I am working from home and I help my parents who take care of my nephew and niece while my sister and her husband are working. We are a very close knit family and we care about each other and finding ways to support each other.

What is it like working in advocacy on a national and worldwide level?

I was born to be an advocate for people with disabilities, especially intellectual challenges. I was born with Down syndrome but Down syndrome does not define me as a person. I am More Alike Than Different as I wrote in my book. My Life with Down syndrome is full of challenges, opportunities, rich experiences and many accomplishments and successful milestones. I always say that focusing on abilities make us richer and stronger. Special Olympics at the local, state, national and international levels has and continues to play a key role in my life building my confidence, leadership skills and offering me opportunities to have amazing experiences where I meet fascinating celebrities, other individuals like me who work very hard to overcome challenges and we are a team together celebrating our abilities.

My family has always been with me supporting the causes of people with disabilities all over the world. I keep wonderful memories of my trips with my siblings. I am the oldest of 4 children and now I have one sister in law and two brother in laws with whom I travel too. I have been to 14 different countries and in some cases, I was invited twice to Trinidad and Tobago to be a keynote speaker for World Down Syndrome Day.

What common misconceptions have you observed about people with disabilities, and how do you overcome those?

The most common misconception is when people have low expectations of individuals with disabilities. We do not want to be ignored and forgotten. We can contribute and we do not want pity, we want to be accepted as individuals with unique personalities, no matter the disability. We have made great progress in the USA and in many countries thanks to Special Olympics and other non-profit organizations that showcase our different abilities. As a young child and when I was taken to the hospital to have my tonsils removed, I asked my mother if they would be removing my Down syndrome too. She said:"“It is something that stays with you all of your life, but it does not stop you from having dreams and being successful." She was right.

Early in my childhood and throughout my life, I had many people who believed in me and gave me opportunities to overcome obstacles and make my dreams come true. At age 12, I was dreaming of winning many races in Special Olympics, especially in swimming, but later I wanted to change people’s perceptions and expectations. I wanted to make a difference. I would share with my audience my life and urge them to meet someone with a disability and have a friend with a disability.

Being born in the 70s, I was one of many of that generation who were not sent to live in an institution. On the contrary, I was fully included with my peers at an early age, learning with them. That inclusion and having people taking me seriously, having expectations of me, helped me overcome obstacles and gained new skills made a difference in how they interacted with me and how I was able to accomplish so much in my 43 years.

The biggest misconception is to think that disability is a disease or that we are sad and helpless with no abilities at all. Like in the general population where we belong, there is a wide spectrum of abilities and personalities. If you ever get to know a person with Down syndrome or intellectual challenges, they will surprise you in unexpected ways. We often try to enjoy life at its fullest. The way to overcome these misconceptions, is to treat us with respect, dignity, and equality. Get to know us, become a friend.

What are the key takeaways your book provides to people with disabilities and people who interact with them?

My book has key themes about Life that apply to people with and without disabilities. The book is about courage, hope, determination and all the things LIFE is really made of. My main goal with the book is to show that by focusing on abilities our life becomes richer. This applies to people with and without disabilities. I want to remind people reading the book that we all share in the same humanity regardless of race, culture, gender, disability or socio-economic status. My story shows that when you believe in yourself and you have opportunities to learn, you can surprise yourself and others in the community. I don’t think that my parents expected me to be an advocate, a public speaker, an international Special Olympics Global Messenger, a Joseph P. Kennedy Jr. Public Policy Fellow making my dreams come true with over 20 years of competitive employment starting as a clerk in the Distribution Center at Booz Allen Hamilton, then with CBRE and now being fully dedicated to advocacy work at SourceAmerica.

I am hoping that by reading my book, those with disability will gain hope and courage, and those without disabilities will see the possibilities and capabilities in spite of the challenges that life poses to all of us. Down syndrome is not a disease, but rather a condition that creates vulnerabilities and unique challenges.

How long have you lived in Vienna and what do you like about living here? If you have any favorite restaurants or other businesses, please share them.

I was born in Madison Wisconsin and we moved to Virginia in 1984 and to the town of Vienna in 1987. Growing up in Vienna, for the past 33 years, provided me with great opportunities to feel that I belong to an amazing community. I was able to play in the Vienna Little League Baseball, and compete in swimming relays at the Vienna Woods Swim and Tennis Club. I had the best elementary school teacher who understood inclusion and got me started in public speaking when helping with fundraising for Special Olympics. The Vienna Elementary school still remembered me 30 years later and invited me to speak for "inclusion week" last year. Going back to my elementary school as an adult and a public speaker, was an incredible experience. I had similar experiences with the Davis Career Center at the Marshall High School, who also invited me to be the commencement speaker for the graduates.

We love our town of Vienna and the community that we interact with. It is like having an extended family close by. I love the proximity of parks to my home, playing in Meadow Lane Park as a child and now playing Tennis as an adult. Living in Vienna made it also easy for me to take the bus to work at Booz Allen Hamilton in the Tysons area on a daily basis and later taking Metro when I had to commute into DC when I was a Joseph P. Kennedy Public Policy Fellow working on Capitol Hill and then with the National Down Syndrome Society in Washington DC.

The town of Vienna gave me possibilities to be fully included in my community, in church as an altar server, active in sports, independent and self-sufficient in getting to work and having a short commute. I also enjoy social activities and all of the Vienna town events especially the Halloween parade, Viva Vienna and the summer concerts at our Town Green and to especially listen and dance to the Fat Chance Band who even played in my backyard for my 40th birthday three years ago.

I like many of the restaurants in town. I miss going to Tequila Grande where I had a birthday celebration with a large group of my friends with music, dancing and lots of fun and now I found the Bear Branch Tavern that just opened and where I celebrated my latest birthday in September. I recommend this restaurant and the Fat Chance Band. In fact, I recommend living in Vienna and if not, do visit to experience the charm of our friendly town and especially the Vienna Woods area where I live.