Disability activist Kayla McKeon is shown here with Congressman John Katko. McKeon, of North Syracuse, has been appointed to the President’s Committee for People with Intellectual Disabilities. (Courtesy of Kayla McKeon)
Job-hunting experts recommend keeping your resume to one page. Kayla McKeon might have a little trouble with that.
The 31-year-old resident of North Syracuse is a motivational speaker, disability rights activist and Special Olympics athlete in six different sports — bocce, track and field, floor hockey, soccer, softball and bowling. (She won silver and bronze medals in bocce in the 2011 Special Olympics in Athens, Greece.) McKeon interned for Congressman John Katko and studies at Onondaga Community College. She is the nation’s first registered lobbyist with Down syndrome and is the manager of grassroots advocacy for the National Down Syndrome Society.
McKeon’s long list of accomplishments just got a little lengthier. She has been named to the President’s Committee for People with Intellectual Disabilities. Next week, McKeon will head to Washington, D.C., to be sworn in.
“I’m like, ‘Wow, really?’ It was very, very exciting,” she said of learning of the appointment. “I’m very honored to be on this committee,” she added.
Created in 1966, the PCPID “promotes policies and initiatives that support independence and lifelong community inclusion,” according to the website for the federal government’s Administration for Community Living. Made up of citizens and government officials, the committee advises the president and the Secretary of Health and Human Services on issues related to people with intellectual disabilities. The committee formally meets at least twice a year.
Once she is done with the piles of paperwork required for her participation on the committee, McKeon will learn what her role on the PCPID entails.
“I’m going to be meeting with everybody and they’re going to tell me my role,” she said. “A friend of mine was also on this committee, so I’m going to be reaching out to him too.”
It’s far from McKeon’s first trip to Washington. In her role as a lobbyist and advocate for the National Down Syndrome Society, she is used to rubbing elbows with senators and congressional representatives. She has formed a relationship with Katko, whose office she interned with for two years.
“We just had that friendship right from the get-go,” McKeon said. “I couldn’t be happier that he’s in Congress helping pass these bills.”
At the top of McKeon’s agenda is the passage of the Transitioning to Integrated and Meaningful Employment Act. The TIME Act seeks to repeal section 14(c) of the Fair Labor Standards Act, which allows businesses to apply for a special certificate allowing them to pay people with disabilities less than minimum wage.
“For people like me, we’re still getting paid pennies per hour,” McKeon said. “It makes it hard to find gainful employment.”
McKeon also champions marriage equality for people with disabilities.
“If two people who are differently abled want to get married, we can’t because [we can lose] our benefits. That shouldn’t happen,” she said.
People who have had a disability since childhood are eligible to collect Social Security Disability Insurance based on their parents’ Social Security earnings record. Once they get married, the Social Security Administration can withdraw those benefits. Healthcare benefits may be affected as well.
Both of these issues are part of what NDSS calls “Law Syndrome,” legal hurdles for people with disabilities that limit their economic and educational opportunities.
“It’s not my Down syndrome that holds me back — it’s the old, antiquated laws,” McKeon said.
McKeon said many people underestimate the capabilities and potential of people with intellectual disabilities such as Down syndrome.
“We have so much we can offer,” she said. “People with Down syndrome can go to college, can drive a car. We can show our abilities, not our disabilities. We are exceeding expectations every day knowing we can do whatever we set our minds to.”
McKeon encourages people to get involved in advocacy. She suggested visiting ndss.org or calling the National Down Syndrome Society at 1-800-221-4602 to learn more about the issues facing people with Down syndrome and how to contribute to the legislative cause.
“You can talk to one of my colleagues and they can help you figure out your next steps,” she said.
When she’s not jet-setting to Washington to fight discriminatory laws, McKeon enjoys spending time with her dog, Bella, going to the gym and loom knitting.
“Sometimes it’s hard to find the ‘relax’ mode,” she said of her busy nature.
McKeon also maintains a blog. To keep up with her activities and to learn more about her work, visit kaylamckeon.com.
Ashley M. Casey is a reporter for The Baldwinsville Messenger and The Eagle Star-Review. She graduated from Le Moyne College in 2012 and previously worked for the Scotsman Press.