An Interview with Carol Westlake

Founding Executive Director, Tennessee Disability Coalition

Carol Westlake has spent over three decades advocating for people with disabilities in Tennessee. As the founding executive director of the Tennessee Disability Coalition, she helped transform a collection of individual voices into a unified statewide force for change. In this interview, she reflects on key milestones, shares lessons learned, and offers guidance for the next generation of disability advocates.

Looking Back: Defining Moments

Looking back on your time in Tennessee's disability community, what stands out as the single most important milestone you witnessed or helped create?

With a number of important milestones over the years, that's a difficult question! That said, none of them would've been possible without the passage of the Americans with Disabilities Act in 1990 (ADA). This fundamental public acknowledgment of the civil rights of people with disabilities was a watershed moment. Joining with people all over the country to advocate for the ADA was powerful. Celebrating its success was even better.

On the state level, I would highlight the Family Support program. Legislation establishing the Family Support program was drafted by the Coalition's task force, introduced and lobbied for by Coalition members, and eventually passed by state lawmakers. The program became the very first home and community-based service in Tennessee state law. It was also the first program that was available across age, disability type, and familial status. Not only did that effort show families the power they had to make change, it provided some much-needed support to people with disabilities and their families.

How did that moment change the day-to-day lives of people with disabilities or their families?

In the moment, the ADA gave people with disabilities and their families hope. It made us feel seen, and it made us feel heard. It reminded all of us that the place for people with disabilities is where we've always been –everywhere. The passage of the ADA – 35 years ago! - opened new day-to-day opportunities. Discrimination did not disappear, but it diminished. And now there were tools to address it. From transportation to employment, education, communication, and government services, people with disabilities and their families can interact with their communities and build lives of our choosing.

To that end, the Family Support program did just that. It provides much needed support, both in terms of support coordination; information, navigation, and connection, and by providing resources to cover things that help a family support their loved one, and stay in our homes, and out of institutions. It remains one of the most successful state programs today.

What lessons from that experience should today's advocates keep in mind as we move forward?

Work together. Listen to each other. Take care of each other. And Never give up. Do not let the perfect be the enemy of the good. This is a marathon.

Building the Coalition

When you founded the Tennessee Disability Coalition, what early strategy turned a collection of voices into a unified statewide force?

Our coalition started with a handful of advocates who understood the power of working together. Who understood that it doesn't matter how you got your disability, or what you call it, or when you got it. The presence of disability creates both unique circumstances, and a universal bond of difference. Though we experience disability differently, we have a shared experience of being treated as an "other", of being discriminated against because of characteristics out of our control and needing accommodations and supports and services because the world's structures are not designed for us.

Our strategy was to make sure everyone had a seat at the table. We formed taskforces to address issues on housing, education, long-term supports and services, etc. Anyone could join. Each taskforce addressed the issue, developed solutions, and then all of us worked together to implement those solutions.

We worked on the things that fit into our mission and values, and the solutions Coalition members agreed on. A shared responsibility, authority, and accountability were critical.

Overcoming Barriers

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

What an interesting question. My initial reaction is none. To be an advocate, in many ways, is to refuse to believe that barriers are immovable, or mountains can't be moved. After 35 years, I can tell you mountain can and do move – everyday. The ancient scientist Archimedes once said, "Give me a lever long enough and a fulcrum on which to place it, and I shall move the world." That's the power of community, the power of working together for a common cause. The more people with disabilities are a part of community life, the more everyone learns and experiences the realities of disability, the more barriers will be reduced or overcome.

Can you share a story that surprised you—something that happened in your work that you never expected?

Former Tennessee Senator Howard Baker used to say, "Never forget, the other guy might be right." You'll often be surprised what you'll learn from another person when you give them an earnest chance to explain their perspective. When Governor Sunquist proposed merging the former Department of Mental Health and Mental Retardation into the Department of Health, the Coalition decided instead of objecting, we would use the proposal as a tool to obtain needed reforms, including an expansion of services to those with developmental disabilities. Bill Purcell, a former majority leader at the General Assembly, and former mayor of Nashville, thought differently. He pressed us to fight for the department, and an expansion of services. The result was a complete re-write of the laws governing the department and a new name and mission, and Department of Mental Health and Developmental Disabilities.

Looking Forward

Fast-forward 20 years: if everything went exactly the way you hope, what would disability services and inclusion in Tennessee look like?

Years ago, an official at the Federal Office of Special Education said to me; "Every child should grow up able to engage in meaningful work and have the supports needed to fulfill their purpose, a place to live and the supports needed to live there, and a circle of family and friends in the community to share life with." Isn't that what we all want? – a home, safety, security, meaning and purpose, and a social network. In 20 years, with the support of state and federal government, strong communities, and good access, people with disabilities could simply live the kind of lives that people without disabilities have.

What concrete first step could we take this year to start moving toward that vision?

There are so many first steps that are needed, it is hard to pick just one. But, above all – don't just post grievances on social media. While yes, awareness is helpful –it's not a solution. Get engaged with your local and state lawmakers, and tell them what's working – what's not, and how things could be better.

Advice for the Next Generation

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

Do not be afraid of "Good Trouble" – to quote John Lewis. Speaking truth to power is not easy, but it is necessary. You cannot be timid, but you can be smart and strategic. You can be firm, but polite.

What unfinished business would you hand to the next generation?

Protecting the gains we have made as a community, hands down. These are especially challenging times, and a growing resentment against people who are different, or powerless. Civil rights are under threat, and oversight and protections are being dismantled. The terms "diversity, equity, inclusion", and even "accessibility", are treated as pejorative in some circles, when they are absolutely fundamental to our community.

In addition to protecting our gains, we need to improve the quality and quantity of home and community-based services. Failures in these systems pose a threat to the independence and inclusion of individuals. There are now pressures to segregate people with disabilities, and put our people back in institutional settings.

Which policy changes from your tenure still need fine-tuning today?

Our policies relative to home and community-based services, especially ECF CHOICES and the Katie Beckett program need tuning. The programs have become extremely difficult to navigate and to use. Those with the most significant needs, and those who are the most vulnerable, have the most difficult time getting the supports and services they need.

Personal Reflections

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

I grew up in Ohio, and moved here for college. But, I truly "grew up" in Tennessee-when growing up counts the most. I got my first post-college job here. I met my husband here. And I've lived here far longer than I've lived anywhere else. Tennessee shaped almost every single personal and professional relationship I've ever had, and taught me empathy, self-determination, and the power of community.

What keeps you motivated when the work feels hard?

My co-workers and the many self-advocates and families I have the privilege to work with every day. Most people, and especially in the disability community, do not have the option to quit because things are hard. They cannot quit, and neither can I. A supportive community keeps me motivated, energized, and safe.

Do you have a story or memory that's stuck with you over the years?

There are a thousand moments that stay in my memory, many of them seemly insignificant, but tremendously impactful. One such memory took place at a family support forum we held in the very early days of the Disability Coalition. A young woman stood up and said that she really wanted to be able to move out her parents' home and into a group home. We spoke for a few moments, and I asked her if she had thought about living in an apartment or another home of her own. Her surprise, followed by her reaction as it occurred to her that something like that might be possible, was like an explosion of light in the room! A light of pure excitement, hope, and joy. It had never occurred to her anything other than a congregate setting was possible. That memory, alongside so many others, reminds me people with disabilities can be limited both by their own experience, and by what others think. As my mother always said – "you cannot think about things that have never occurred to you before." It's important for all of us to help plant the seeds that allow people with disabilities and their families to think about the possibilities, and to support each other in achieving our dreams.

 

This interview is part of a series highlighting leaders in Tennessee's disability community. Their insights help us understand where we've been and where we're headed as we work toward full inclusion and equality for all people with disabilities.