In My Own Words: People With Down Syndrome is a blog dedicated to sharing the stories, reflections, and perspectives of people with Down syndrome, as expressed in interviews.
The first registered lobbyist with Down syndrome, Kayla McKeon has packed a lot into her 30 years of life, including giving “way too many speeches to count.” She’s been a Special Olympics Athlete and Spokesperson, and a member of the National Down Syndrome Society's self-advocate advisory board and DS-Ambassador program. She was also NDSS’s self-advocate of the year in 2016. Before joining NDSS as the Manager of Grassroots Advocacy, Kayla interned with U.S. Representative John Katko.
In addition to all of this, Kayla is simply a lovely person to chat with. Enjoy Sam’s interview, and Happy New Year, everyone!
What did you do in your role as an intern with Congressman John Katko? "I interned with him two days a week. I went to public events, representing him at events, and doing things like accepting citizenship awards. He helped me get this job."
Tell us about your college experience. "I have about 33 credits toward a degree in general studies [from Onondaga Community College and Lemoyne College.] In the beginning, I just took one class at a time, but then I figured out that I wanted to get serious about college, and I started taking more at once. I’m about halfway done."
When did you get your driver’s license and tell us about the process?"Yes, I can happily say that I have my driver’s license. After 26 years and 5 road tests, I finally got it! I got the written part without a problem. It was the road test—the double stop sign, the parallel parking, there was always something. When I finally got it, I was jumping up and down."
You’ve done so much public speaking. Have you kept count of how many speeches you’ve given? "Way too many to count!"
What’s been the most memorable speech you’ve given and why? "I did my first one in Syracuse, New York. When I did that it hit close to home for my parents. I discovered public speaking was something I really enjoy. It’s my first love. The most memorable was probably when I spoke for teacher appreciation [atGillette Middle School]in front of 2,000 people. I spoke about my abilities, my employment, my achievements, and the use of the “R” word. I got two standing ovations."
What’s been the hardest thing about moving away from home? "The hardest thing has been missing my entire family. I am the only child. My parents came to visit me this weekend. Just making the decision to move was very hard initially—and coming to Washington D.C. was hard too. I’m from Syracuse, New York."
What are your goals in your new role as Manager of Grassroots Advocacy? "I love being the manager. I am the newest member of NDSS, and I’m part of the policy team, along with my boss, Ashley. I will be speaking, and they have me do work in the office. They’ve opened my eyes to many opportunities for advocacy—and NDSS is really putting their money where their mouth is, and hiring people with Down syndrome. Having people with Down syndrome involved makes it all better—people cannot say no to us, Sam!"
How do you hope to help people with Down syndrome? "By giving them a voice. You have to have a voice to empower everybody out there that is differently abled so that they can speak up for themselves!"
Tell us about your most interesting experience so far on Capitol Hill. "A couple of months ago, we went to Capitol Hill and spoke to a staffer about joining our task force. The Congressional Task force allows us that are Differently Abled to promote legislative activities and public opportunities for those of us with Down syndrome. The next day, the staffer said yes!"
What are the initiatives that you are most excited about? "I am excited to talk about the #DSWORKS® program because we talk to different companies about hiring people with Down syndrome—maybe we will even be talking to people near you, Sam! I’m also excited about the campaign to end #LawSyndrome, because it’s not Down syndrome that’s holding us back, it’s the old laws."
Are there any positive changes you see coming soon for people with Down syndrome? "We always see positive changes coming. We want to keep that positive outlook on life—because when we put a positive spin we can turn even something ugly around."
If you could change anything for the betterment of the lives of people who are differently-abled, what would it be? "Well, first of all, I want to make sure everyone has a voice—and I want to make sure we all come together as one voice—so everyone should come to our Adult Summit and the Buddy Walk® on Washington April 9, 10, and 11, to see a whole new way that we can advocate for ourselves!"
What are your personal dreams for the future? "I’m hoping to get my own place and live independently. I have a roommate now. I’d also like to maybe have my own car so I can drive to work (Watch out, Ashley.), and eventually, I would like to have a family. Right now, I have a dog back home."
Where do you see yourself in ten years? "I hope to be working with NDSS for as long as I can!"