Evelyne Villines remembers when she was told she couldn’t attend school because she was “handicapped.”
Now 84 and an international advocate for people with disabilities, Villines showed up for her first day of school with her pencil and notepad, ready to learn. But the young girl, who contracted polio at age 3, was sent home and told to inform her mother, “I don’t have time to teach a handicapped child.”
When she returned home, she remembered asking, “Mom, am I a handicapped child?”
Villines then was institutionalized with other youngsters who had survived polio, a bleak period of her life that stretched from ages 9-16.
“It was so far away, I rarely saw my parents,” Villines recalled.
But most humiliating of all were the times she was selected to go to “conference.”
That didn’t mean she’d be attending a conference to learn and network; rather, she was to be a subject at a conference, a medical specimen to be paraded around, examined by strangers and made to demonstrate her “crippled” walk.
“Every girl on our ward would secretly — and some not so secretly — cry when our turn came up, because we didn’t want to go,” Villines recalled.
For when the living specimens arrived at the medical conference, the first thing they’d hear was the order, “Take off your clothes.”
“And they meant all of them,” Villines told the crowd of grassroots advocates at the Jefferson County Fair Park Activity Center Friday.
The audience, comprised mostly of people with developmental disabilities who are part of Wisconsin’s “A team” of self-advocates, gasped, with some of the members speaking up to say, “That’s not right!”
The next order Villines heard was “Walk.”
“As a very small child, I knew I didn’t walk pretty,” the polio survivor said. “I limped. I wobbled from side to side. And it hurt.”
Then, officials at the conference would start marking her bare skin with black marking pencil, indicating where the bones in her legs weren’t right.
“At that point in my life, I didn’t care if I ever walked again,” she said. “I wanted someone to put their arms around me and hug me.”
But Villines did not give up, and she urged the disability advocates in the room not to give up either, but to continue fighting for their rights to fair treatment, respect and the ability to make their own choices.
One of the choices that the “A Team” has been advocating for is the continued existence of supervised workplaces such as the Fort Atkinson-based Opportunities Inc., which work with people of all ability levels, including those who could not obtain a job in the community without considerable coaching, mentoring and on-site training.
The motto of that effort has become “My Work, My Choice,” a slogan that was displayed Friday on the backs of T-shirts worn by every self-advocate in the crowd.
The grassroots advocacy event, held in honor of National Disability Employment Awareness Month, took place over two days, with events in Madison on Thursday and Jefferson on Friday.
Before Villines’ talk at Jefferson County Fair Park, the national disability advocate had the opportunity to tour the Opportunities facilities in Fort Atkinson.
Opportunities was one of the sponsors of Friday’s grassroots advocacy event which filled the entire Activity Center. The audience included people with disabilities, those who work with them through Opportunities and other agencies, and some family members.
The other major sponsor of the event was Rehabilitation for Wisconsin, with partnership sponsors including Maas Bros. Construction, Kandu Industries, St. Coletta of Wisconsin’s Consumer Leadership Council, Goodwill Industries and Best Events. Additional event contributors included Buit Mobility Solutions, the Teen Day Broadcast Program, Source America and others.
“You are the reason I am still out on Capitol Hill, backing another senator into a corner,” Villines said.
She gave kudos to Opportunities in particular as an exemplary facility, saying that she knows members of Congress have visited the Fort Atkinson-based nonprofit agency, “as I should think they would. This is one of the best facilities I’ve ever seen,” she said.
Villines has been a self-advocate and an advocate for others with disabilities basically her entire life.
She travels worldwide to share her life story and to advocate for ways to better the lives of people with disabilities.
She has held numerous prominent governmental positions, including being appointed by then-President Bill Clinton to a committee that works on behalf of the blind and people with severe disabilities.
When she was growing up, Villines said, she was called “crip,” and “gimp,” and other terms that she’s trying hard to forget.
“And it hurt. It really hurt,” she said.
She said she bet a lot of audience members have been the target of unkind names as well, like “dummy” and “retard.” A low roar of agreement and outrage from the audience backed up that statement.
“You can change that,” Villines said, and Emily, a member of the audience, piped up, “You can make a difference. People are different.”
Thankfully, attitudes are chang ing, thanks in part to the Americans with Disabilities Act.
“I was in Washington D.C. when President Bush signed the Americans with Disabilities Act into law,” she said. “There is still sadness in my heart that the ADA passed with one person voting against it.”
The ADA and other measures which have brought disabilities into the public eye and helped people realize that people with disabilities — of whatever type — have the right to live, to shop, to enter public buildings, and to work, just like others.
Now, a new bill that’s set to be introduced in about two months is aimed at adding the United States to the United Nations treaty supporting the rights of people with disabilities internationally.
“This means that we, as Americans, believe that people around the world with disabilities deserve to be treated fairly,” Villines said.
The advocate shared another painful memory from her past. Known for her heavenly voice, Villines was asked to sing at many people’s funerals — with ailing community members contacting her father before they died to request that she sing at their service.
As a junior in high school, Villines was thrilled to be selected to perform the lead role in the high school operetta, but then terribly wounded when she was informed that she would be singing from behind the person while an “able-bodied” actress portrayed the role visually.
“That was a very different way of saying, ‘We don’t want to look at people with disabilities.’”
Changes in attitude have brought a change in focus — not on disabilities (what people can’t do), but, rather, on abilities (what people can do).
But if they’re to make full use of their abilities, people with disabilities must be willing to step forward, to advocate, and to educate others.
The first step is to let people know you’re there, and to help them see things from your view.
“We must be willing to talk about our disability,” Villines said. “We may walk differently. We may talk differently. We may see or not see. Accept that. Then we have to continue to say … ‘We have rights.’”
One of those rights is the right to work in a supported environment.
During her tour of Opportunities, Villines said she saw a lot of people with disabilities doing work that was extremely meaningful and which gave them purpose.
“If you have purpose in life, you know someone needs you,” she said.
The speaker said that people who meet a person with a disability and hear about their concerns and viewpoint will better understand all people’s need to be accepted as first-class members of the community.
That morning, Villines said, she got up thinking, “What an adventure.”
“I couldn’t wait to get here, because I had purpose in my life. You are the reason I get on plane after plane, using different wheelchairs. … I am here to tell you, you are a first-class citizen.”
Villines said she has only known Barb LeDuc, Opportunities president and CEO, since August, although two Opportunities consumers actually made the trip to Washington D.C. this summer to attend a grassroots conference that Villines was at.
In Washington D.C., the two Opportunities consumers, Jennifer Weigand and Mackenzie Kylmanen, underwent grassroots training and then had the chance to share their stories with senators and members of Congress and their staffs.
“Do you know you can be the most important person in Wisconsin when you go into your senator’s office and tell them about your work and what it means to you?” Villines said.
“We need to get to our Congressional delegation,” she said. “They need to know you.”