The Road to “Beyond Tokenism”

By David Taylor, 2023 Social Connectedness Fellow

“Beyond Tokenism” is an important research study on the roles of people with intellectual disabilities in leadership positions on committees and boards of organizations. It was funded by the Michigan Council on Developmental Disabilities. This study explored this topic in several different ways, including through in-depth interviews, focus groups, and a national online survey. The study collected information about the experiences of people with intellectual disabilities in Michigan, as well as from around the country.

I played a part in making this study happen as a peer trainer. I worked closely with one of the study’s lead researchers, Mark Friedman. As part of the study, Mark and I traveled day and night through the state of Michigan. We went all over Michigan — upper, western, southeast and downriver of the state — even the Upper Peninsula. It felt like we traveled everywhere! Along the way, we interviewed dozens of self-advocates about their experiences.

We asked them if their voices were really heard, and if they really felt like they had a seat at the table. A lot of them said, “No.” For example, some people said they wouldn’t be called to vote, or they wouldn’t be involved in creating the agenda for meetings. They wouldn’t do anything but show up and be a token. A lot of people we talked to said that they didn’t even know that their voices could be heard.

Some people we talked to worked in sheltered workshops. They were on committees or boards that were part of the service provider organizations that ran the workshops. Sheltered workshops are places where only people with disabilities work. They are segregated. Too often, people with disabilities working at sheltered workshops don’t even get paid the minimum wage.

Some people say that sheltered workshops help people with disabilities get skills that they need to find jobs in the community. But in my experience, that’s not the case. Many people with disabilities working in sheltered workshops don’t have enough support or opportunities to find paid community jobs. No wonder that the people on committees and boards at these organizations told us their voices weren’t being heard!

We took in all that we heard. We had to do a presentation to the Council to let them know what was going on. Mark and I, along with the many other people who helped with the study happen, wrote up what we learned in a special issue of the journal Inclusion. I think that everything we learned has helped to make people more aware that “nothing about us without us” means that people with intellectual disabilities need to be actively involved on committees and boards that make decisions that affect us.

One of the things that came from our study was the creation of a new group called the Self Advocates of Michigan–a statewide organization led by people with intellectual or developmental disabilities. The leaders included self-advocates who had worked for or served on the Michigan Council on Developmental Disabilities. Its goal is to make sure that self-advocates’ voices are heard wherever decisions about their lives are being made.

For me, the study was eye-opening. It made me realize that I, too, felt like a token in some of the work that I was doing. Was I just sitting at the table so that others could say they had someone with a disability at their organization? Or did they really want me to have a say in how they did things? Now, I know when I’m just a token and when I’m an equal with everyone else in the room. I want all self-advocates to know and experience the difference.