Advocating for herself, others with disabilities

Self-advocacy specialist Tia Nelis at the steps of her portrait on the stairs of the National Museum of American History, on display in July.

Tia Nelis has spent more than two decades advocating for herself. In the process, she’s spoken up for many others.

Nelis wasn’t completely sure what self-advocacy meant when she helped start the movement in Illinois more than two decades ago. But her passion for finding her own voice and helping others with disabilities do the same has received national attention.

For the Google Impact Challenge celebration of the 25th anniversary of the Americans with Disabilities Act, Nelis was among 10 disability rights leaders whose portraits were displayed on the stairs of national monuments in Washington, D.C., July 24 to 27.

Her portrait was painted on the stairs of the National Museum of American History, along with her quote:

“We want the community to see us as friends, co-workers and neighbors instead of clients and patients, and to get rid of all those labels that hurt people.” 

“It was pretty great,” said Nelis, a self-advocacy specialist in the Institute on Disability and Human Development and the Rehabilitation Research and Training Center on Developmental Disabilities and Health.

“It’s wonderful that people are celebrating the law but sometimes after the hype goes away, so does the talk about it. We can’t let that happen. We need to teach people why it makes a difference in people’s lives.”

A growing wish-list

Nelis first heard of self-advocacy when leaders from the movement in Nebraska and Canada spoke to her high school class at Naperville North. She and four classmates were recruited to help found People First of Illinois, the state’s first nonprofit agency to teach people with disabilities how to advocate for themselves.

“When we decided to join, it was just about stuff — the people from Nebraska and Canada had jackets and shirts that we liked,” Nelis said. “We look back and our wish lists were things like answering machines, pencils — that was what was important to us.

“So much has changed. Now our wish list has things like employment benefits.”

Speaking up was daunting at first, but Nelis quickly learned the value of conquering her fears.

“At first, we thought that giving speeches for five minutes and saying our names was a nightmare,” she said. “We had learned that you respect authority and don’t talk back. But self-advocacy really works when you’re given the opportunity to make choices, to speak up, to say your opinion.”

Speaking up felt so good that she wanted to help others find their voice.

“We started learning about how some people weren’t allowed to make choices,” she said. “Some people lived in institutions and didn’t have any choices.

“The greatest part of my job is when I get to help someone else do those things — when someone else speaks out for the first time and you know that you had a part in making that happen. You have to believe in yourself before you can learn to advocate for anyone else.”

Her involvement in the self-advocacy movement began about 25 years ago, just as support for disability rights was gaining ground after the Americans with Disabilities Act passed on July 26, 1990.

“When we first started the movement, there weren’t many role models for people with intellectual disabilities,” she said. “The law was a lot about physical disabilities.”

Nelis worked with faculty in the Institute on Disability and Human Development to create presentations for people with intellectual disabilities that explain the ADA through pictures and stories.

An intellectual disability is characterized by significant limitations in intellectual functioning and adaptive behavior that affect social and life skills, according to the Americans with Disabilities Act.

“For people with intellectual disabilities, if you get a document with a lot of big language, it’s not going to be read,” Nelis said.

“If I don’t know how it’s going to help my life and my friend’s life and I don’t have support to help me understand it, it’s not going to be read or touched.”

Speaking out on a national stage

Nelis continues her self-advocacy on a national level as president of Self Advocates Becoming Empowered, a nonprofit funded by grants. “We fly by the seat of our pants,” she said.

She trains other self-advocacy leaders, speaks at disability rights events and works to create more opportunities for people with disabilities on behalf of the national nonprofit.

“We are working on marriage — people who have disabilities can’t get married or they will lose their benefits,” she said. “Another project we’re working on is around sexuality and relationships. People with disabilities learn how to be safe and protect themselves but they also need to learn about the good parts of relationships — marriage, partners.”

Nelis, who joined UIC 23 years ago, participates in self-advocacy programs and training throughout the state and often speaks to UIC students about the importance of the movement.

“I’m pretty lucky because when I started here, we were able to design my job around my self-advocacy work,” she said.

She’s a coordinator for the Leadership Education in Neurodevelopmental Disabilities, which brings together people with disabilities, faculty members, educators, therapists, physicians, parents and others to talk about their roles in each other’s lives.

“We support each other,” Nelis said. “And we can learn about everybody’s career and then educate people about what we learned.”

Her self-advocacy wish list today includes structural money for self-advocacy groups and better employment, housing and transportation for people with disabilities.

“Transportation is a barrier for people with disabilities — some people can’t pay for it and then you need to have great friends who support you,” said Nelis, who lives with a roommate in Elmhurst and uses public transportation.

“People need to be able to have their own places to live, and live with whoever they want, with the support they need.”

She hopes the self-advocacy movement will continue to gain momentum.

“There are still a lot of people out there with disabilities that don’t know about self-advocacy,” she said. “Self-advocacy is a movement, not a program. It’s about people’s lives.”