Sister Act Fights for Disability Awareness

Advocates focus on ‘abilities’

by Alyssa Quintero

The phrase “when life gives you lemons, make lemonade” rings true for two very “able” women served by MDA.

Janeal Lee of Appleton, Wis., and her sister, Sharon Spring of Rochester, Minn., both have limb-girdle muscular dystrophy. Lee, 30, was crowned Ms. Wheelchair Wisconsin on Jan. 22, and Spring, 27, was crowned Ms. Wheelchair Minnesota on March 12.

But something happened on their way to the Ms. Wheelchair America competition to be held this summer in Albany, N.Y. The competition would have marked the first time two sisters were to compete for the title.

Lee and Spring, however, won’t be in Albany.

In April, pageant officials forced Lee to forfeit the Ms. Wheelchair Wisconsin title and prizes. The state committee ruled that she didn’t meet the physical requirements because she can stand and walk short distances without the use of her motorized scooter.

Then, Spring, who uses a power wheelchair, resigned her state title in order to show support for her sister and to raise disability awareness.

“Initially, what happened was upsetting, but I try to roll with the punches,” Lee said. “I have always been conscious of the need to educate others, but this experience has strengthened my mission to be an advocate for people with disabilities.”

When One Door Closes…
In response to the situation, the World Association of People with disAbilities (WAPD) appointed Lee as its first recipient of the Ms. disAbility International Award. WAPD also selected a man to receive the Mr. disAbility International Award. Both awards are means of highlighting the abilities of people with disabilities.

“When they called about the award, I was surprised at first,” Lee said. “When I accepted, I thought, ‘I want to make the most of this new opportunity to make a difference.’”

In her new role, the high school math teacher will educate the public about disability issues and advocate on behalf of people with disabilities.

“Janeal is going to be a super representative, fitting right into the group, and I think she will do a great job in Wisconsin,” said George Kerford, the chairman emeritus of WAPD’s Board of Directors.

She already has scheduled several speaking engagements and welcomes the chance to speak at schools, businesses or other organizations.

Lee also is planning to establish Wisconsin’s first WAPD chapter, and is creating a Web site. She intends to provide a strong support system and networking opportunities for Wisconsin residents.

Lee serves on a WAPD guidelines committee, which will determine the award’s criteria for future applicants and nominees beginning in June 2006.

Of the organization’s name, Lee said, “I love the fact that it’s lowercase ‘d’ and uppercase ‘A.’ That says everything about the award. This focuses on your abilities and the things you can do. It’s very positive.”

A Little Help From Her Sister
Spring works as a paraprofessional in a kindergarten classroom, and like her sister, she continues to help educate the public on disability issues.

Spring said, “It was important for me to give up my title because I see myself as an advocate for individuals with disabilities. I knew in my heart that I couldn't continue fund-raising and being a part of an organization that treated women with muscular dystrophy so poorly, especially my sister.”

Spring doesn’t regret her decision to dissociate from the Ms. Wheelchair America pageant.

“The title is something I would have had for one year of my life,” Spring said. “Janeal will always be my sister, and it was most important for me to show my support for my sister.”

Spring simply chalks up the events to one “incredible learning experience.” Like her sister, she remains focused on raising awareness about disability issues in Rochester and across the country.

“My plans are to continue educating the public, and I will continue to share my experiences as a disabled woman with others and keep working toward creating positive change,” Spring said.

Spring added, “There are lots of individuals who have muscular dystrophy or other disabilities who are able to stand and even walk small distances. This does not make them ‘less disabled’ than those of us who cannot stand up or walk.”

Change One Day at a Time
Lee and Spring continue to address groups in their respective communities and across the country, together and separately, as they pursue their top objective — advocacy for people with disabilities.

“This has been an eye-opener because of how far we still need to go in terms of educating others and challenging stereotypes,” Lee explained.

Spring added, “People with disabilities have so many barriers they must overcome in their everyday lives that there is no reason to add labels among ourselves and exclude people based on their individual abilities.”

In light of a difficult situation, Lee, with her sister’s help, took the lemons, made lemonade and realized the importance of literally and figuratively standing up for her beliefs.

“I am proud of my abilities, and will continue to stand and walk until I no longer can,” she said. “I know that day is in my future, but that day is not now. If you cannot physically stand up, you can still stand up for what is right.”

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