The First Decades

Self-Advocates of Indiana Board of Directors in 2002
Self-Advocates of Indiana Board of Directors in 2002

Self-Advocates of Indiana

“And when she got up and she introduced herself and shared a bit about the MRDD commission, she got booed real loud by the self-advocates.”

It was 2008, and Indiana state representative Sheila Klinker had been invited by Self-Advocates of Indiana (SAI) to speak at a national conference in Indianapolis. Betty Williams was SAI’s president. Betty says the incident led directly to one of the self-advocates’ most important accomplishments. Betty recalls that Representative Klinker, an appointee on the Commission on Mental Retardation and Developmental Disabilities, didn't understand what the booing was about, “but then we explained it to her.” The Commission must drop “the R word” from its name, they demanded. At the legislative group’s next meeting, a vote was taken and “within five minutes” the name was changed.

When SAI was founded 18 years prior, its members were just beginning to learn about their rights and how to advocate for people with intellectual disabilities. The national group Self-Advocates Becoming Empowered (SABE) that SAI would host in 2008 was only in the planning stages. Over nearly two decades, Indiana’s self-advocates would build the capacity and commitment needed to stage a successful event for their peers from across the country. And to change the thinking of lawmakers.

“How do you get somebody to listen to you?”

The self-advocacy movement originated in Sweden in 1968, arriving in the U.S. in 1974 by way of England and Canada. That was the year Oregon individuals with intellectual disabilities called for a national convention, rejecting derogatory labels to declare they were “People First.” In the following decade, Indiana’s People First initiative began with a $10,000 grant from the Indiana Governor’s Council for People with Disabilities (GCPD) to Fort Wayne self-advocates. They in turn trained other groups across the state. Steve Hinkle was president of Easter Seals Arc of Northeast Indiana. He recalls the trainings addressed questions such as “How do you get together as a group? How do you bring up issues? How do you get somebody to listen to you?”

A few years later, a leadership conference of advocates from around the state convened in Indianapolis with GCPD support. On January 10, 1990, Self-Advocates of Indiana was born. The group’s mission was “to learn our rights and to speak out about our rights so that we get the respect we deserve.” In its first year, SAI leaders provided trainings resulting in the establishment of 10 self-advocacy chapters. By 2005, there were 35 local self-advocacy groups in the state.

Darcus Nims Speaking at ADA Celebration
Darcus Nims Speaking at ADA Celebration in 2005

Along with fellow self-advocates, Darcus Nims was SAI’s founder. She was its first president. Those were some of the achievements President George H. W. Bush recognized when he presented Darcus with a national award in 1991. She had been nominated by Noble, an Indianapolis disability service agency that has provided meeting space and other assistance to SAI.

In 1997, SAI received its first grant from the Indiana Governor's Council for People with Disabilities, which has provided ongoing support to the organization. Also in 1997, the Indiana Institute on Disability and Community (IIDC) began to dedicate staff support to SAI, focusing on increasing its organizational and leadership capacities. For over a decade, IIDC assisted SAI to develop educational products, sponsor events such as its first statewide conference (1999), and establish its organizational structure and board of directors. Betty Williams envisioned the organization as a tax-exempt, nonprofit entity, a dream realized in 2002. By 2006, the SAI's internet website had been launched.

“You're there for the other disability people who can't speak up for themselves.”

Self-Advocates of Indiana has been instrumental in statewide projects and its members active on advisory boards. In 1998, the year New Castle State Developmental Center was scheduled for closure, SAI members made visits there to talk to residents and their families about deinstitutionalization. SAI provided Project Vote training, and more recently has worked to inform individuals in nursing homes about their choices and right to live in the community.

The Arc of Indiana assisted SAI to host the national SABE conference in Indianapolis in 2008. Around that time, the group became formally affiliated with The Arc, and a paid SAI administrator came on board in 2011. The Arc has recruited self-advocate leaders into professional roles on its staff. With continuing support from the GCPD, SAI had 45 chapters around the state as of 2019. The group has a speakers bureau and holds a bi-annual conference with The Arc. Over 600 self-advocates attend the annual SAI picnic. SAI members are active in a number of projects, including educating individuals about sexuality and relationships and about supported decision-making.

In 2006, two years before she died, founder Darcus Nims recounted an incident when someone had asked her why she was advocating for changes at a sheltered workshop. She was no longer employed there. “You're there for your friends,” she explained. “You're there for the other disability people who won't speak up for themselves or can't speak up for themselves.”