David DeSanctis, 27, was one of the first actors with Down syndrome to play a leading role in a film, and he now serves as a Public Outreach Associate for the National Down Syndrome Society (NDSS). We were lucky enough to meet him last spring at the Buddy Walk on Washington and have since rented his 2014 movie, “Where Hope Grows,” on Amazon. Sam took inspiration from David’s character’s level of independence, and was excited to learn more from David, who said of the movie, “It really changed my life.”
To learn more about David, including his advice for others with Down syndrome, here’s the rest of Sam’s interview:
Who are your role models and why? “I used to look up to Miley Cyrus back in high school. Now I’d say my role models are Michael Rosenbaum, who played Lex Luthor in Smallville, and Dwayne (The Rock) Johnson. I just learned that The Rock has a childhood friend with Down syndrome. I loved that. When I first watched the video about him and his friend Milton Rosen, I literally cried. It really moved me. Now I truly want to meet Dwayne ‘The Rock’ Johnson and his friend Milton.”
How did it feel to be one of the first actors with Down syndrome to play a leading role in an English-speaking film? “I loved it. That was about five and a half years ago now.”
How did being a movie star change your life? “I learned good things on the set. Before I was a movie star, I had taken a broadcasting class at my high school in Louisville KY, but I really didn’t know that much about the movie making industry, so I learned a lot about how to make a movie. It really changed my life, and impacted my life.”
[David’s job with NDSS came about thanks to the movie (see his comments later), as well as years of opportunities for inspirational speaking across the country. He says, “I have gotten to see new places all around the nation. Everywhere I go, I’ve met extremely cool people.”]
To watch the trailer, and learn more about David’s movie, go to: https://www.imdb.com/title/tt3200980/
Did you know how to drive a car before the movie? “They asked me to learn how to drive a car—I still don’t have an actual permit or a license yet, but I had to drive in the movie.
“Once when I was on the set, I thought I was in drive, and I put the pedal to the metal. My parents said they were thinking, ‘Oh no, he’s going to burn through a stop sign.” But luckily I had left it in park, so I just revved up the gas pedal.”
“In high school, when I was 15 or 16, my dad let me drive in the neighborhood. Then later, my friend taught me how to drive her golf cart, and I do that for Special Olympics every year. But I’ve also been driving golf carts outside of Special Olympics. I get to practice driving them at our vacation spot in Georgia. I’ve also been driving their go-carts down there. If someone challenged me in a go-cart race—I’ll beat them every time. I’ve been doing go-carts since my movie. Part of the movie was filmed at the Renaissance Fun Park in Middletown, KY. They had go-carts there, and I’ve been doing go-carts ever since.”
Do people ever recognize you when you go places as “Produce,” your character from the movie? “At first they did, sometimes even outside the state of Kentucky. When I visited one college campus when I was doing my public speaking career, I was about to order my lunch and there was a line of people waiting to get pictures and autographs from me. It was hard for me to order my food and eat my lunch. But now, that has died down.”
Are you still acting? Would you like to be in another movie? “I would love to, but I just have to wait for my agent to send me roles. I did get to be an extra in another movie called “Anastasia: Once Upon a Time.” I was in the scene called “Beatrice’s Birth Day Skating Party.” I was playing an arcade game and talking to kids, and sitting at a concession stand, but I don’t think they know the release date for that movie yet.”
How did you land your job with the NDSS? “That was due to the movie that I was in. The producer of the movie had known the CEO of NDSS at the time.” [The director introduced David to the CEO, and they got to know one another.] “I had to apply and fill out paperwork, and fax it over to them. They gave me the position of public relations on a golden platter.”
What does your role with NDSS involve? “Every Tuesday, we have a staff conference call, and there are a lot more things that I do for the NDSS. I go to Buddy Walks to promote NDSS, and I go to the Adult Summit every spring, and the gala and auction in New York City every January.
I’m also writing blogs for them, and also contacting all the people who attended the 2019 adult summit to invite them out to Arizona for the 2020 adult summit for next year.”
When did you learn to ride a bike? And how long did it take you? “I’ve been doing that my whole life, since I was about six or seven years old. I’ve always loved to ride bikes. My family goes riding in a park called The Parkland—that’s one of the parks in Louisville, KY, but there is another park in my neighborhood (the Louisville Loop) that is going to be attached to The Parklands.”
What do you hope to accomplish through your role at NDSS? I am the Public Outreach Associate. There have been people assigning me to different projects, so I don’t know if there’s any one accomplishment. One thing I’d like to do in the future is to become part of the new leadership—and to rename it the National Intellectual Disorder Society. I would like to include everyone with IDD—all of the people with different disorders together. There is an organization here called the Louisville Adaptive Rowing Club, and they never turn anyone away who has any disability or disorder. I’d actually like to rename all of the organizations I’m a part of. The National Down Syndrome Congress would be the National Intellectual Disorder Congress, and Best Buddies would be Best Families Forever.
What are some of your other dreams for the future? “That’s one of my dreams, but another one of my goals is to live out in Venice Beach, CA, to work with Will.i.am (a famous rapper) in his building, and to work with his 3D printers.
Where do you see yourself in five years? “I answered this question nine years ago, when I was back in high school. My senior class did a book about where we would love to be in 10 years. I said I would love to live in Florida or the Bahamas, and own a motorcycle. Those things haven’t happened.
“Now I’d say, I’d like to have my own acting agency, picking out whatever movies and shows I want to be in. Instead of reality shows or independent movies, I’d pick big blockbuster shows.”
What advice do you have for others with Down syndrome? “I know people with Down syndrome who want to be actors. My advice if they are in middle school or high school would be to sign up for drama classes. If they are in college, to major in theater, or sign up for acting classes. After that, maybe go to NYC if you want to be on stage, or move to California if you want to be in TV or movies.
“For acting, you have to build your resume, and you have to practice the parts they give you for auditions. The other thing is to know, if you get a part, you have to practice your lines every day all day. I used to practice them to music.
“Other than that, I do cooking, biking, and I’ve taken two years worth of piano. My advice on biking is just getting on and if you fall off, get right back up and keep getting back on and riding. For cooking and piano: it’s practice, practice, practice.”
Still giving inspirational speeches, following are just a few of David’s words of wisdom (and a song link) for all: “Go for your dreams. The sky is the limit. Never take ‘no’ for an answer, and ‘Don’t Stop Believin’” https://youtu.be/1k8craCGpgs