The first registered lobbyist on Capitol Hill with Down syndrome is spitfire dynamo Kayla McKeon.
“She is literally breaking barriers as we speak.”
That’s the word from New York Congressman John Katko on National Down Syndrome Society lobbyist Kayla McKeon, and he should know. Years ago, at a campaign event, Rep. Katko, who advocates for disability rights, saw a young woman with Down syndrome in the crowd. He was throwing t-shirts and kept trying to get one in her hands, but missed every time. When the event was over, he found her to hand her a t-shirt personally. “I thought I’d never see her again,” he says.
Yet a few months later, at a charity event, Rep. Katko was shocked to see that same young woman walking up to him with a business card. “She introduces herself, says thanks for the t-shirt, then hands me her card. She goes, ‘call me,’ then walks away. I look at the card, and it says Kayla McKeon, Motivational Speaker,” Rep. Katko remembers to WCNY for their profile on Kayla, My Fight for Inclusion.
“And, from that moment on, I was like, I just love this person.” When he was elected, one of the first things he did was call Kayla to give her a job in his office.
Kayla’s Fan Club
Kayla McKeon is the type of person who has a lot of number one fans, with Rep. Katko at the top along with Kandi Pickard, the president and CEO of National Down Syndrome Society (NDSS). Both Rep. Katko and Ms. Pickard saw the radiant light rocketing out of Kayla’s being. They also saw her bulldog tenacity—an ideal combination of traits for anyone working in politics for social change.
Kayla interned in Rep. Katko’s office for two years while continuing her motivational speaking engagements, learning the ropes on Capitol Hill and figuring out the all-important secret of getting on the calendar of a representative.
“I was a little bit nervous starting on Capitol Hill because I didn’t know what was expected of me,” she says. “I had to learn along the way. But, it’s important to have a voice for people with Down syndrome and other disabilities because we want to be a voice.”
The More Voices We Have, The Louder We Are
As a volunteer for National Down Syndrome Society while she was an intern for the congressman, Kayla’s jump from intern to NDSS lobbyist was natural. “Kayla’s title with NDSS is Manager of Grassroots Advocacy,” says Pickard. “She is in charge of making sure members of Congress know about our issues and why they are important.”
Kayla’s passionate advocacy for disability rights plus her determination to succeed mean that if Kayla can just get a seat in front of a congressperson, there’s an almost 100% chance that a yes will follow. “It’s very hard to say no to Kayla,” Pickard laughs.
“It’s a huge responsibility to share my story and share my voice,” Kayla says. “I like being called a role model because I hope people realize how important it is to advocate for themselves and for loved ones. The more voices we have, the louder we are collectively.”
Kayla comes from a lifetime of uniting forces to win. A bronze and silver medalist at the 2011 Special Olympics World Summer Games in Athens, Greece, Kayla competes with Special Olympics year-round in events like soccer and field hockey. A natural leader, Kayla uses her favorite tactic to motivate her team to do their best: “I do a lot of smack talking,” she laughs. “I’m the goalie for field hockey so I say, ‘does anybody want a piece of me?’ or ‘not in my house!’ I’m very competitive—sometimes too competitive for my own good!”
Kayla’s chutzpah also drives her to win on Capitol Hill. NDSS and Kayla are tackling two major issues that pose serious threats to the disability community: marriage equity and fair pay.
Kayla is currently lobbying for a bill called Marriage Access for People with Special Abilities Act, also known as MAPSA. It challenges the penalty imposed on people with disabilities receiving supplemental security benefits who also want to be married. As the law stands now, when two people with disabilities become one household, they lose federal benefits because both incomes are taken into account. This means that the support and services they need disappear, simply because they got married. What has happened for so many generations of people with special needs is that they’ve had to make a heartbreaking decision.
“We’ve been forced to either choose the person we love or the vital benefits that help us live,” Kayla says. She lobbies congresspeople to vote yes for MAPSA, which will eliminate the marriage penalty for people with disabilities by allowing each individual to keep their supplemental security income benefits.
Or, as Kayla explains it: “I want my Medicaid and Medicare—and I want to marry my boyfriend, too.”
“We are more alike than we are different”
Kayla’s other undertaking on The Hill involves taking down the Subminimum Wage law, a relic from 1938, which allows employers to pay people with disabilities less (and often far less) than the minimum wage.
“Being included in the workplace is huge,” she says. “Right now, we are working on the Competitive Employment Act. People with disabilities are still paid pennies per hour. We are making twenty cents for the same job where someone else is making twenty dollars. I want to make $20 an hour like you are for doing the same job.”
Kayla’s work lobbying for the Competitive Employment Act could bridge the gap in one of the biggest chasms for equality and inclusion for people with disabilities: fair wages for competitive, integrated work. Employers have been underpaying employees with disabilities to do minimum wage or higher jobs because they could get away with it thanks to this 1938 provision. “This is why we keep knocking on doors and why we won’t give up,” Kayla says. “This helps us work, and put money in our accounts to pay for things like medical costs. Our message needs to be heard.”
“I’m a very good example of being competitive,” Kayla concludes, “Because we’re not giving up without a fight.”
Be the Change
Kayla’s persistence to change the system for full inclusion of people with special needs in workplaces and marriage equity will no doubt work. She believes wholeheartedly in her efforts to rewrite the legal status for people with disabilities so they can pursue their happiness in peace. “The sky is the limit [for people with disabilities]. I have Down syndrome, but I don’t let that define me, no matter what,” she says. “We are more alike than we are different. We want to live the American Dream. We want to be married, have jobs, a car … and we absolutely deserve those things.”
“One day I want to be married,” she says. “And start my own family, to be able to show [my children] what they’re capable of. My parents always wanted me to be included and to reach my highest potential. I want to show someone their abilities. I want people to know the sky’s the limit. It’s not just about me; it’s about everybody else out there.”
For everybody else out here, we stand with Kayla’s efforts to change everything that’s unfair in our legal-political situation for people with disabilities.
We Include knows that Kayla came here to win … and poor treatment of people with special needs? Not in her house.
Kayla invites anyone who wants to join the voices for these policy changes to get connected with the National Down Syndrome Society, where there are volunteer and ambassador opportunities.