When I first started this work 35 years ago, Tennesseans with disabilities lived vastly different lives than they do now.
Be it by a family member, the state, a well-intentioned doctor — or some combination thereof, lives were dictated. Predetermined. A linear path with few choices, and even fewer exits.
Back then, most laws and systems (including Tennessee’s) were engineered in terms of institutional programs and congregate facilities. The kind of notorious state-run facilities that separated children and adults from their families, and communities.
Within state government, the primary drivers of any disability policy were charity, and pity. Sure. Charity is good, and it’s a start.
But, empowerment, opportunity, respect, personal choice, and inclusion?
Those are far better than any charity. And we knew it.
Americans with disabilities, their families, and allies from across the country worked to pass the Americans with Disabilities Act (ADA) of 1990. With the swipe of a pen by President H. W. Bush, opportunities expanded. Barriers were reduced. And not just the physical ones.
Suddenly, the kinds of invisible barriers that so often divide people were uniting them. Across disability labels, across demographics, across every corner of the political spectrum.
We knew our existence couldn’t be relegated to political talking points. We’re too diverse. Too vast. And too common. Recognizing and reckoning with the reality of disability — as a natural part of the human experience — was a message many don’t like to hear, but is no less real. And it’s a message we still use to this day.
Truth is, seven out of 10 Tennesseans will, at some time in our lives, experience disability. It’s a reality no amount of wealth, status, fame or political ascension can shield. We can choose to ignore it, or we can anticipate and engineer for it. When we opt for the latter, a great majority of disabled people can live lives of quality. Rich and full lives. Lives that need not limit a person’s right to make choices, pursue meaningful work, live as independently as possible, and fully participate in all aspects of society.
In my time, I’ve seen the disability community speak out, and help state leaders and the Tennessee General Assembly understand that and understand the power they alone have to switch the narrative from charity and pity to one that enables policies that support the full participation of disabled people in the economic, political and social fabric of our state.
In those 35 years, I’ve learned some important lessons I believe are relevant not only for those experiencing disability, but to all Tennesseans committed to moving our state forward.
- We said it before. We’ll say it again. Disability transcends all demographics, all religions, all races, and all political ideologies. Our issues are not partisan, and attempts to cast them as such backfire spectacularly. The latter is typical of leaders void of a diverse set of lived experiences or a failure to imagine themselves in someone else’s shoes. In other words, experience matters. And it results in better policies — policies that don’t just support people with disabilities, but all Tennesseans.
- Good policy takes time, and it takes perseverance. It took nearly 20 years of tireless advocacy to transform Tennessee’s long-term care system from a system wholly dependent on institutions, to one that not only embraced home and community-based services but also shifted spending to support them. They are still far from perfect, but our community knows the power of playing the long game.
- We cannot forget our history, our gains, nor the work that lies ahead. While no longer relegated to a linear existence of institutionalization, we know good policy is only as good as its implementation. The General Assembly can pass and fund a bill, but it is state agencies that implement it. The same home and community-based services we have fought so hard for are rife with problems and simply don’t work for many Tennesseans who need them. Workforce issues, design flaws, no-bid contractors, and other barriers need to be highlighted by advocates and addressed by policy makers. Same goes for other public systems in Tennessee like education, healthcare, and employment. If we forget when we’ve been, we sidestep accountability for what goes wrong, and preserve the status quo by failing to implement lessons learned from our own history.
- The needs of Tennesseans with disabilities are not “special.” They are essential. Access to an education, housing, healthcare, employment, a voting booth – not special. They are essential to living our lives, a point often forgotten once “disability” enters the chat. Like other Tennesseans, we simply want to live our lives. We want to go to school. We want to see a doctor when we need to. We want to go to a restaurant, or to a park. We want to be in our communities.
- The state’s budget is a moral document. The old adage of “show me a child, and I will show you the parent” is apt here. We elect leaders to make choices of how limited resources are spent, and those choices are revealing. They reveal the state’s true priorities and commitments to supporting and strengthening families, people, and communities. How? Tennesseans with disabilities live and breathe the consequences every day. Policy decisions, budget priorities, even staff appointments can, and do, impact the lives of Tennesseans with disabilities. For many, they can even be a matter of life or death.
Three and a half decades later, and as I begin to pass the proverbial torch, I am tremendously grateful to my many friends and partners in the disability community and our champions in government and the private sector who do the hard work. And even more grateful to the fierce advocates across our great state – with and without disabilities – who speak up, tell their stories, support and lift each other, all to help create a new reality where all people, disability or otherwise, can live a life of their choosing.
One where our policies reflect our declared values.
A reality that lets all of us simply go about our daily lives.