Lobbyist with Down Syndrome Carries On
She didn’t have a Barbie with Down syndrome growing up. As an adult, she helped to make one. She also lobbied the U.S. Congress to protect the rights of people differently abled.
Editor’s note – While the news articles upon which this career story is based, used the term “disabled,” the reality is that many people with that label should be more accurately described as “differently abled.”
PERSONAL BACKGROUND
Kayla McKeon (KM) was born with Down syndrome, a genetic condition caused by the partial or full extra copy of the 21st chromosome.
KM loved playing with Barbie dolls growing up in the 1990s. She brushed their hair and dressed them up. Together, they went on walks, hosted dinner parties and cruised around in toy convertibles.
Her Barbies had many types of appearances; some were blonde, while others were brunette. Some had blue eyes, others, green. But none of them looked quite like KM, because none of them had Down syndrome. “When I was a kid, I didn’t see myself in them,” said KM.
A few decades later, that has changed.
EDUCATION
The parents of KM insisted to local schools that KM be mainstreamed in regular classrooms, rather than assigned to special classes for disabled students.
KM’s mother believes that her daughter operates fluidly in the adult workplace in part because she was mainstreamed. She had an aide with her to help her through the school day, but KM wanted to be with non-disabled kids. As mom Patti stated, “She’s always been a hard worker and also very stubborn. I think that’s what got her to where she is today.”
As of 2023, KM was taking classes toward her Associate degree at Onondaga Community College in central New York state.
LOBBYIST
While an active volunteer with the National Down Syndrome Society (NDSS), KM was introduced to NDSS executives, including Sara Hart Weir, the President and C.E.O. (Chief Executive Officer) of NDSS, who knew when she met KM that she was “something really special.”
Said Weir, “I wanted to put somebody on staff like Kayla who could influence members of Congress. Kayla is one of the most impressive, young, vibrant individuals with Down syndrome I have ever met. She’s spunky, she doesn’t take “no” for an answer and she’s quite charming. She has all the characteristics of an exceptional lobbyist.”
So, KM transitioned from a volunteer to paid employee – the start of a career!
KM’s job is to advocate for the inclusion of people with ‘disabilities’ in the workplace. And obviously she is a shining example of the fact that those who are differently abled can excel at whatever they put their minds to, even in high pressure workplaces like Capitol Hill.
A highlight of KM’s lobbyist career – so far, with – no doubt – more victories to come – was helping to persuade the U.S. Congress to pass the “Able to Work Act” which allows people with disabilities to keep both their savings and their free health care.
The courage to speak to large crowds and important ‘deciders’ is a requirement for a lobbyist. KM’s mother notes that her daughter has such confidence, that when she meets someone, she always leaves quite a favorable impression. “She’s never nervous. When she gives a speech to a big crowd, I’m a wreck but she’s as calm as can be. She doesn’t care who she is speaking to; it’s like she is talking to her best friend. That’s a real strength when you’re talking to members of Congress.”
INSPIRING A NEW TOY TO EXPAND REPRESENTATION OF A CHALLENGE
Faced with stiffer competition and dwindling market share, the Mattel toy company spent years trying to expand Barbie’s appeal to millennial parents who want their children’s toys to have purpose and meaning rather than to simply entertain.
In 2016, Mattel did a makeover of the Barbie brand, introducing dozens of dolls with more varied body shapes, skin tones and hair styles. Over the following years, Mattel has used its ‘Fashionista’ collection to add Barbies with hearing aids, wheelchairs and prosthetic limbs as well as those experiencing hair loss and living with vitiligo (loss of skin color in patches).
“Mattel’s goal is to enable all children to see themselves in Barbie, while also encouraging children to play with dolls who do not look like themselves,” said a Mattel executive. “Doll play outside of a child’s own lived experience can teach understanding and build a greater sense of empathy, leading to a more accepting world.”
KM was involved from the start when Mattel contacted the NDSS to see if it wanted to help create a Barbie who had Down syndrome. Over the next year, KM helped advise Mattel. Compared with other Barbie dolls, the one introduced is shorter with a longer torso, characteristic of people who have Down syndrome. The doll has other distinctive features, including a rounder face, smaller ears, a flat nasal bridge and eyes that are slightly slanted and almond shaped. Mattel also gave the doll a single line on her palm, another trait often associated with Down syndrome.
The new Barbie wears orthotics, medical devices some children with Down syndrome use to support their feet and ankles. To ensure accuracy, the NDSS provided Mattel with a box or orthotics as models.
A medical professional reviewed the doll’s physical features to make sure they were correct.
KM said she’s happy with the way the Barbie turned out. From not being able to play with a doll like her as a child, now KM has helped create one that does.
AN INDEPENDENT LIFESTYLE
KM travels by herself from Syracuse, New York to Washington, D.C. for her work with the NDSS. She recently passed all the tests to achieve her driver’s license.
She has competed in the World Games and Special Olympics, even giving speeches for the latter.
Says KM, “We can do whatever we set our minds to, we can drive a car, go to college and pursue meaningful careers.”
On her blog, KM has stated: “We are more alike that different, so let’s go and show our awareness of Down syndrome and celebrate our abilities, not our differences.”
Editor’s note – Humans will always be born with different physical and mental capabilities. The differences have been presented visually as along a ‘spectrum’ of birth-related skills, depicting the range of objective differences in people. But a ‘spectrum’ of birth related differences cannot capture subjective differences in personal motivation to overcome apparent physical and/or mental challenges.
It is obvious that KM is functioning at a high level of the Down syndrome spectrum of physical and mental abilities. To her credit, she has combined her objective capabilities with high level, subjective personal motivation to succeed.
In contrast, picture someone born with Down syndrome who has no functioning legs or hands but is determined to use available technology to live as independently as possible. Or, picture someone born with high functioning capabilities – like KM – but unlike KM, with no motivation to push through life’s challenges. Perhaps the person of that last example can be motivated by KM’s story to take full advantage of the boundaries of life they received at birth.
CAREER SATISFACTION
KM justifiably believes that she’s “making a huge difference” for people with disabilities while “making history.”
Perhaps more important than making history, KM is paving the way for future generations – even those yet to be born – so long as they are allowed to be born in a world that has grown increasingly hostile to persons differently abled.
KM told the BBC (British Broadcasting Corporation) that “Being a lobbyist on Capitol Hill, I don’t realize how many lives I touch. This is why I love being a role model for others.”
OTHERS WITH DOWN SYNDROME AND CAREER SUCCESSES
KM’s mother told the Washington Post, “Things are changing, things are getting better for people with Down syndrome. Kayla is a tip of the iceberg. It will be a common thing someday.”
Her mother is correct, as career success for people with Down Syndrome has already been demonstrated by Blake Pyron, the first Texas business owner with Down syndrome; by Charlotte Fine, a United Nations speaker; by Sara Pickard, British based and one of the most influential women supporting people with learning disabilities; her motto: “Down synndrome….. so what?” and by Ryan LaFave, a volunteer firefighter – plus many others.
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This career story is based on several sources including an article written by Jonathan Edwards, published by The Washington Post on April 26, 2023 and an online article by an unknown writer, published by Live Action News, presumably also in April 2023.
