At the age of 12, Shanell Nieves was diagnosed with limb-girdle muscular dystrophy. Fearing she would always be seen as “the girl in the wheelchair,” Nieves set out to be known for her work, rather than her condition.
Nieves, now 31, succeeded. She will be the featured speaker at the Champions of Independence Luncheon to benefit Independence, Inc. on July 24 from 11:30 am to 1 pm at Maceli’s. This event will honor State Senator Tom Holland as well as Pat Slimmer, owner of Slimmer’s Automotive.
Nieves, while working full-time at an insurance company in Leavenworth, began hosting luncheons to educate people about muscular dystrophy. Nieves now serves as a volunteer for the Muscular Dystrophy Association, assisting with the MDA Telethon, Muscle Walks and other events and also frequently speaks on behalf of the MDA. For her work, Nieves received the Kansas’ 2011 Robert Ross Personal Achievement Award, which is the MDA’s highest honor.
“Because of the person I am, I wanted to get everyone involved. Everyone knew me, the girl in the wheelchair, but they didn’t really understand what I did,” Nieves said.
MDA President & CEO Gerald C. Weinberg regards Nieves as “a shining example of the kind of leadership that people with disabilities contribute to their communities every day.”
Nieves, appointed by Governor Brownback, also serves on the Statewide Independent Living Council of Kansas. As a member of this council, Nieves has an opportunity to work with others to help people with disabilities become independent.
"Shanell is a go-getter. She wants to be immersed in the world," said Jill Enyart, Independence, Inc.'s director of Medicaid services, who performed Nieves' eligibility assessment for state services and set up a plan for attendants to assist her on the job. "She doesn't want anything beyond what she needs."
In March of this year, Nieves also participated in the Ms. Wheelchair Kansas pageant. This pageant reminded her that she was not alone. “I’m not the only one who struggles,” Nieves said. “[I]t was eye opening to see they’re independent, successful, and smart. They were so inspiring.”
Although she was not crowned the winner this year, Nieves now sees the outcome as a blessing, as she soon became the proud mother of three adopted kids.
Even being an instant mom of three boys doesn’t daunt Nieves. “Honestly I think the most difficult obstacle [isn’t] working or raising the three kids. It’s the little things like not being able to use the bathroom when I want to,” Nieves said. “It’s the little things you don’t think about.”
But Nieves does not let these “little things” set her back. By delegating some of the physical aspects of her life, Nieves can spend more of her time with work and with people she loves.
“Just because you can’t independently care for yourself doesn’t mean you can’t independently live,” Nieves said.
Tickets for the Champions of Independence Luncheon are $40 each or $350 for a table of 8. Tickets may be purchased online at www.independenceinc.org, or in person at Independence, Inc., Slimmer’s Automotive Service, Cottin’s Hardware & Rental, or KLWN/92.9 The Bull/KISS.FM.