When her only child was born with Down syndrome, Jawanda Mast was simply a mother who wanted to learn more about the condition.
Fourteen years later, the Olathe woman is now a political advocate who fights for the rights of millions of other Americans with disabilities.
One of her biggest passions has been promotion of the Achieving a Better Life Experience Act, which would allow parents of special-needs children to create a tax-free savings account for the future care of their children.
Working to get the ABLE bill passed, Mast has pleaded with congressmen. She has conducted workshops. She has given speeches.
The long hours and tireless work recently earned Mast the honor of being named the National Down Syndrome Society’s DS-Ambassador of the Year Award.
“I know it sounds cliché, but I’m just trying to do my part,” said Mast, an Arkansas native. “I don’t have any special talents, but I’m persistent. I believe what I want is important and I believe our congressmen should feel it’s important, too.”
She says the real hero behind her award is Rachel, her teenage daughter who inspires her every day.
The feeling of respect is very mutual.
“I love my mom and I’m very proud of her,” said Rachel, a soon-to-be eighth grader at Indian Trail Middle School. “She works very hard. My mom is amazing.”
The two work side by side as they educate people all over the country about Down syndrome. Mast, with her melodic southern drawl, and Rachel, with her bubbly personality, enjoy making new friends and showing them how people who may seem different are not really that different at all.
Rachel, who is heavily involved in youth theater, even got a little taste of fame last year by starring in an educational YouTube video that teaches Down syndrome awareness. The video, starring local kids, has nearly 100,000 hits.
“Rachel is a great self-advocate,” Mast said. “She has great manners and follows the rules and has a very confident stage presence. And she loves to smile and make people feel welcome.”
Her passion lies not only with her daughter, however, but with the millions out there like her. Especially those with limited resources.
“I’m very lucky because I have a supportive husband, a nice house, live in a great school district and I never have to wonder where my next meal is coming from,” Mast said. “But there are a lot of parents out there who simply don’t have those things and don’t even know their rights. I want to be able to help those people.”
Raising a kid with a disability — whether physical or intellectual — requires knowledge and creative thinking, she said.
“I want to encourage parents to take risks, to step outside of that segregated environment,” she said. “We need to educate the world that people with disabilities don’t have something wrong with them; they’re created just the way they were meant to be. We just have to find ways to include them.”
Despite having Down syndrome, her daughter lives a typical suburban life. She’s starred in numerous plays, taken dance lessons and played sports. Plus, she got straight A’s on her report card last year.
Mast and her husband, Jonathan, encourage Rachel to think for herself and be independent. It’s a mindset that has inspired their daughter to dream big and the Down syndrome community to take notice.
“Jawanda’s tenacity to ensure Rachel has the most independent life possible is like no one I have ever seen,” said Sara Hart Weir, the vice president of Advocacy and Affiliate Relations for the National Down Syndrome Society. “She often says the symbol of Rachel’s march to independence is that she wants to live in a pink house. It’s a fun but serious topic for their family.”
And while Mast appreciates the crystal clear Ambassador of the Year award in her living room, a simple vocalized sentiment stitches all over those years of hard work and passion into a full circle.
“When I grow up I want to be a teacher,” said Rachel, smiling up at her mom. “I want to help other kids.”