An Interview with Wanda Willis

Breaking Ground Interview: Wanda Willis

Former Executive Director, Tennessee Council on Developmental Disabilities
Interview conducted May 1, 2025

Q: Looking back on your time in Tennessee, what stands out as the single most important milestone you witnessed or helped create?

A. I've got six. I realized after I started thinking about this, it was very hard. These are not in priority order.

First thing was the downsizing and closure of Tennessee State Developmental Centers and beginning community-based services in the 70s and 80s. When I first came here, there were thousands of people in the developmental centers. They're now closed. It was an important shift for the state.

The second standout thing is People First of Tennessee, the statewide self-advocacy organization, launched in the 1980’s by the Council in partnership with the former Division of Intellectual Disabilities. That was a very big deal that stayed with us and I assume is still today a real hallmark in the whole state. It was a national model.

Third, employment services: in the 1980s we helped create a statewide Employment Roundtable with the Council, the Kennedy Center at Vanderbilt, the Department of Education’s Transition Services Division, and Vocational Rehabilitation. What began as that core partnership grew over the past decade into a collaboration of 10+ agencies coordinating and advancing employment programs for Tennesseans with intellectual and other developmental disabilities. This a partnership that lasted decades.

Fourth, in the 1990s we helped launch Next Steps, the state’s first postsecondary education program at Vanderbilt University—through the Council and the Vanderbilt Kennedy Center—for students with intellectual disabilities. These were not degree-seeking classes; students took continuing-education coursework and completed multiple required internships. Placements ranged from college and professional sports teams to the Tennessee Performing Arts Center, the Tennessee Capitol with the Governor’s staff, childcare centers, and auto mechanic shops, among others. The postsecondary programs were just amazing.

Another thing: a lot of people don't have access to recreational opportunities, so we started the Next Chapter Book Clubs. Those book clubs are specifically for non-readers. You think at first, okay, I don't know how that works, but we went through training for it. It's amazing. The people who go to it love it. The clubs meet weekly, creating fun social outlets and real opportunities to build friendships outside of work. People love them - I know some who belong to two separate book clubs

And then, Project SEARCH created training sites at Tennessee hospitals. At the end, most of [the interns] were offered jobs. I actually met someone a few years ago over at Vanderbilt Children's Hospital who had worked there for fifteen years - a real career.

Q: What lessons from that experience should today's advocates keep in mind?

A. Oh, there's one lesson, believe it or not. The lesson that I continue to learn every single day, even in retirement, is that people with a developmental disability will always, always surprise us by exceeding barriers that we set based on what we think can't be worked around or overcome. And it just thrills me.

The part that doesn't thrill me is this affects people's lives. But I've seen so many people go around what we thought, and that's the lesson for me.

Q: Fast forward 20 years. If everything went exactly the way you hoped, what would disability services and inclusion in Tennessee look like?

A. Support services in Tennessee would be available to all adults with developmental disabilities after they leave high school based on their individual needs rather than fitting an individual into specific service options after having them wait years on a list.

Adults with developmental disabilities deserve options to leave home and live as independently as possible with support in the community when they finish high school. When you leave home, you're different, whether you have a disability or not.

Q: What concrete first step could we take this year to start moving towards that vision?

A. Create an ongoing conversation and a shared vision and strategy with policymakers. We all want the same thing. I really believe that.

You know, no matter what differences you have with policymakers or other advocates or people, we all want the same thing. That is, we want the best for people with a developmental disability. We don't agree on how to get there. We don't agree on maybe what it looks like, but the way you start making those changes is you start talking.

And that's what the Council's here to do—get that conversation going. The beauty of that law puts everybody at the table we need. Even if they're not on the Council, go create a group, start the conversation.

How can we get kids out of high school and get them to have services? You know, it's probably gonna be money. It's not all gonna be money, and even if it is money, don't be scared.

I think the important thing is, don't walk away from it. Don't take no for an answer. Get a conversation going.

Q: What is your personal connection to Tennessee, and how has that shaped your perspective on disability issues?

A: I came to Tennessee in 1977. I had been a teacher in the Carolinas and was unable to find a teaching job here, so I went to work for the office of community services for Middle Tennessee that was located at Clover Bottom Developmental Center. Deinstitutionalization was just beginning.

I had never worked with adults with disabilities. I’d taught kids, and then it was like - oh, they grow up. Okay. They probably don’t need me going over the ABCs with them. I also wasn’t aware of the public policies that affect people’s lives, so it was a huge learning curve for me.

I just feel so lucky to have been part of this incredible journey. I’ve had amazing teachers and mentors, individuals with disabilities, parents, and siblings. Any accomplishment I was part of (and this is the truth) was always led by a person with a disability or a family member.

Q: If you could give one piece of advice to the next generation of leaders in our field, what would it be?

A: Look for solutions. Don’t just point out problems. I can complain as vigorously as the next person, but after five minutes I want to understand why we’re doing things the way we are, what the barriers to change are, and then start the conversation. We’re not going to agree on all the issues or how to solve them, but the conversation is really enriched by diverse thinking.

So don’t be afraid of that. Sit down and talk with people who are different. There were some advocates in the state that didn’t get along with certain folks at TennCare; I became really good friends with them. We would listen to each other and try to influence each other, and I think we did, to an extent.

If we’re going to make change, you’ve got to understand the actual problem. Is there a policy? Show me the policy written down. And then I find out, well,  it’s not exactly written down. It’s not exactly a law. That means the door is wide open. But you only get there by sitting down and talking. I get so tired of people who just complain—you don’t get anywhere. People shut the door in your face.

Q: What do you do when someone shuts the door in your face?

A: I find another way to go back. I mean, certainly, that's happened. And sometimes there are gonna be certain people that you don't—and I don't mean to sound judgmental—but sometimes people are in this work for different reasons. Sometimes people are more concerned with their career. But if you’re coming from the right place, I just want to be part of change. Let's see if we can make things better. 

You can get to them if they care about that. If they don't, you may as well walk out.

Q: What kept you motivated when the work felt hard?

A: This is really short: determination to get to “yes.” So when it felt hard, I’d tell myself, it’s okay, because we’re going to get to yes. Maybe it’s only step one of five, but we’re going to win.

I remember going to a P&A [Protection and Advocacy agency] board meeting where they were going over the current lawsuit they were doing. All of a sudden it hit me. And I said to the lead attorney, “You guys never lose, do you? What a place to work. You never lose a lawsuit." She laughed, and it’s true: they don’t, because they’re always on the right side. The law is so clear—the ADA or whatever statute applies.

Q: Can you share a story or memory that stuck with you over the years?

A: There are two stories involving people that I consider mentors of mine.

One morning, I was walking across the Vanderbilt campus because I had been to a meeting, when the bell rang to change classes. Suddenly, I was surrounded by all these students changing classes, rushing to their next class. Someone walked by me, and called out, “Hey,” and kept on walking.

I looked up to see the smiling face of Matthew Moore, who was in the Next Steps program at Vanderbilt. Matthew Moore—jeans, black T-shirt, black backpack—just like every other kid on the campus. And he was one of the first ones in the Next Steps class. He happened to be a person with Down syndrome, looking like the sharpest kid on campus.

And I mean, this is burned into my brain—this large group of kids, Matthew in the middle, turning around, saying, “Hey.” When I looked at him, he had this big smile on his face and kept right on walking. It was like he showed me, at that one point in time, where we all needed to be headed: that something which seemed impossible was very achievable. It was all in that visual that I still have today.

The next story occurred on a trip to Washington, D.C. There was a delegation from Tennessee meeting with our representatives. Someone called on Will McMillan, who’s also a young man with Down syndrome, to get us started. He started to speak about disability issues in his personal life, and my head just shifted to him, my mouth wide open. I couldn’t believe it. It was the most articulate and smoothly delivered comment you could imagine. I couldn’t add anything. You know, head of the Council—got nothing.

Will has always influenced me. If I ever see him out, he probably knows my name; I’m probably just one of those people in the disability world. But he has always influenced me with his life. It’s ever-changing. He takes on new challenges. I think he holds about three jobs. He moved out into an apartment. And the way he’s able to talk about these legislative issues with no notes—you see me sitting here reading every word—I mean, he’s just delivering this wonderful thing.

These stories really stick with me. They’re stark visual reminders that the barriers we place on people are the source of their limitations in life, not their disability. It’s not the disability. 

One time I was at a meeting at Vanderbilt, and I heard Timothy Shriver speaking. He’s from the Shriver family—Special Olympics. He said, “It’s about us, not them.” And, buddy, I mean, that just was engraved across my brain. It’s about us. Everything we’re dealing with is trying to change something that the culture has created.

Q: When you first entered this work, what barriers felt immovable, and how were they finally overcome?

A: When I first came to work with the Council in the 80s, the Council was treated like an advisory committee—not at all consistent with the federal law that established councils. The federal funds provided to Tennessee for the operation of the Council were actually funding 12 state preschool programs for children with developmental disabilities.

So I attended a national meeting for councils on developmental disabilities, learned what we were supposed to be—and that we were not doing it. I came back home thinking, we’re gonna lose this entire grant. But once I understood what it was, I presented a proposal to the Commissioner of Finance and Administration for the state to gradually take over funding those preschool programs over the next three years. See, I didn’t just say, “Give us a million dollars.” It was, “Here’s a plan: every year, you’ll give us a third, a third, a third.” He said, “Okay.”

Initially, it was me and a part-time secretary. But a very significant accomplishment was the executive order the governor [Governor Haslam] signed that actually established the Council as a freestanding board or commission in Tennessee. Prior to that time, we were under the budget code of the Department of Developmental Disabilities, and people didn’t understand it—they thought that department owned us. Once we gained autonomy, it allowed us to form independent and collaborative relationships with all the other cabinet agencies.

Q: What policy changes from your tenure still need fine tuning today?

A: Too many to name, and that's a key point. We always need to be evaluating and changing nonstop. We repeatedly make the mistake of thinking that a new program or a new approach is the answer for everybody, that it fixes our problems—and then we stop. We stop evaluating and changing. And at that moment, we're already behind, you know? We need to be about change all the time.

So,  too many to name. Let's do the evaluation you guys are doing—what's important right now and what has a good chance of being changed. 

Q: When you reflect on the Council's growth from a little-known agency to a national model, what do you think made that transformation possible?

A: The genius of the Developmental Disabilities Act—written by parents and individuals with disabilities—and the incredible leadership of Tennessee families and Tennesseans with disabilities. That's what made it all possible.

I didn't come up with these ideas. It was always a person with a disability or a family member.