PAST

Wisconsin leads the way

Disability rights are often an afterthought — something to consider after plans have been set.

Yet one in four adults in the United States live with some type of disability, physical, cognitive, or otherwise, and that doesn’t include those with mental illness. In Wisconsin, 21% residents, or about 977,000 adults, have a disability — echoing national numbers.

Wisconsin happens to be one of the few leaders in disability rights amid a movement that has sat on the backburner for a few decades. Any forward progress is often overshadowed by larger, louder demonstrations.

Enacted 45 years before the landmark Americans with Disabilities Act, the Wisconsin Fair Employment Act of 1945 brought the state to the forefront of disability rights. Jones believes that Wisconsin has always had a strong history of following through when it came to disability rights.

“Your centers for independent living are very strong in Wisconsin. They’ve been around for a long time. They are among the first,” she says, “The state of Wisconsin has always had a very proactive approach.”

When the Rehabilitation Act, a law that prevented federal programs from discriminating against those with disabilities, was signed into federal law in 1973, states did little to implement regulations. After four years of waiting, disability activists across the country staged sit-ins in federal offices. Demonstrators in San Francisco occupied the Department of Health, Education and Welfare for nearly a month, one of the longest occupations of a federal building in U.S. history.

According to Jones, after the Rehabilitation Act took tangible effect in 1978 thanks to the protests for disability rights, the funding was made available for the centers for independent living, at which point Wisconsin began building the base of centers of independent living. These centers provide housing and long-term care for people with disabilities that prevent them from living independently.

Jones also maintains that Wisconsin was one of the leading states to provide more community-based options for people with developmental disabilities. Wisconsin happens to be one of the few states that uses a county-based approach to providing services, as opposed to a statewide approach, to “bring things home and provide people more opportunity to receive services quickly.”

Wisconsin continues to push forward with disability rights representation and legislation.

In 1999, Donald Perkl, a Madison man with a cognitive disability, took Chuck E. Cheese to court after the company fired him from his janitorial position. His victory marked a significant reaffirmation to the ADA.

Less than a decade later, Angelika Arndt was placed in an isolation room at her program in Rice Lake Day Treatment Center. Staff members there pinned her to the ground until she stopped breathing; Arndt died May 26, 2006. Her death resulted in the 2011 Wisconsin Act 124, establishing a framework meant to protect children against abusive, unlawful or unnecessary seclusion or restraint.

In 2019, Gov. Tony Evers made Executive Order #15 the first bill he signed into law, a bill that promotes inclusive language at the state level by removing the “R” word from all state rules and regulations.

Long-term care for people with disabilities has made progress through programs such as Family Care and the “Include, Respect, I Self-Direct,” or IRIS program. These federally funded programs provide widespread care, with 56,756 enrolled in Family Care and 24,200 in IRIS.

Mitch Hagopian, an attorney at Disability Rights Wisconsin, works with the long-term care programs that provide the funding and foundation for the community-based independent living centers. Care centers in the 1990s were privately owned, he says, which led to focused and specific care, but also had extremely limited funding.

“Those programs could limit the amount of money they could spend … so there was a huge demand for this and couldn’t be filled,” Hagopian says.

Room for improvement

Although Wisconsin has made great strides in supporting the disability rights movement, there is certainly more that needs to be done, especially when it comes to providing long-term care services.

While the programs are federally funded, the money is not limitless. The large enrollment numbers require tight budgeting, which means that concessions in care must be made. That, coupled with a staff shortage across the state, means the standard of care is compromised.

Long-term care facilities are not the only place where disability rights have fallen short. Anne Stevens, executive director of The Arc-Dane County, frequently encounters the need for school advocacy, especially when it comes to whether individualized education programs (a written education plan known as an IEP that is designed to meet a child’s learning needs) are not being met or resources are inadequate. The Arc also often guides families through times of future planning.

“Underneath the umbrella of future planning is housing, support workers, financial planning, what happens to my child when I’m no longer able to care for my child?” Stevens says. “That kind of stuff is very big, and people are very concerned with it right now.”

Jones most often notices the othering that occurs between people with and without disabilities, but people with disabilities is “the one protected class that any one of us can become a member of at any time.” She hopes to change that way of thinking to one that is more empathetic.

For Tim Saubers, our approach to disability rights slows the progress. Saubers is a board member of Disability Rights Wisconsin, and time and again, he’s seen disability addressed as an individual problem with individual solutions.

“We really need to be shifting how we look at disability from that individual lens to kind of the social model of disability where we’re really looking at it as a result of systemic design, structural design, structural inequities, historical oppression and marginalization. I don’t think we’re there yet,” he says.

Nathaniel Lentz, an outreach advocate for People First Wisconsin, is focused on changing the perspective. His advocacy work comes as second nature; he has spoken publicly about life with a motor disability since he was in elementary school.

He typically doesn’t discuss his disability, even during his advocacy work, focusing instead on addressing short-term and long-term goals and setting boundaries. Taking risks is essential to advocacy, and that means reaching outside the disability and creating space for an inclusive world.

“I think sometimes people talk about the disability too much instead of being the person who they are,” he says.

Featured photo by Perri Moran.