by Chrissy Hood
When a family prepares to go on an outing, they may discuss where they want to eat or where they want to go. For families like ours, the number one question and concern is this: “where will we change our adult daughter?”
Our daughter, Alaina, is 21 years old. She loves being around people and out in her community. She loves watching the University of Tennessee Southern sports, dancing to the credits at the end of movies, riding escalators, and eating honey buns. Alaina also has a rare disease, Phelan-McDermid syndrome. While Alaina outgrew baby changing tables at the age of four, we will be changing her for the rest of our lives.
There are very few options for changing an adult in public. When Alaina needs changing, we have a constant dilemma. Do we leave where we are and go home? Do we move our van to a remote area to change her in it? Do we change her on a public restroom floor? Or do we simply stay at home? None of those options are dignified, humane, or allow her to live her best life.
This is why I began working on legislation for powered, height-adjustable adult-size changing tables in Tennessee in 2020. Being powered and height-adjustable is crucial because these tables offer greater safety and accessibility compared to fixed-height ones. They facilitate transfers from wheelchairs and allow individuals with disabilities to easily access them. This benefits both caregivers and individuals, especially in long-term care scenarios like with Phelan-McDermid Syndrome, where frequent changing is necessary. Additionally, these tables alleviate risks for caregivers who would otherwise have to lift individuals onto them. With their universal design catering to all ages and sizes, from infants to aging adults, they address the reality that disability can impact anyone at any time.
After my orientation to the Tennessee Council on Developmental Disabilities, I sat down with the Policy Director, Lauren Pearcy, and let her know about our family’s need for adult changing tables. It’s something she and many others had never thought about. Let’s face it, if you aren’t living it, it isn’t something you’d think about either. Another Governor-appointed DD Council member Roddey Coe became involved in this need, not because his son had the need, but because he had walked into a public restroom in downtown Chattanooga and saw a man in his 30’s laying on the bathroom floor being changed. Roddey saw firsthand how undignified it was for that man. Changing Spaces Tennessee was started and we used social media to help raise awareness about the need for adult changing tables.
In 2020, we attended Tennessee’s Disability Day on the Hill where we met with our legislators, introduced Alaina, shared the need for powered, height-adjustable, adult changing tables, and left a one pager about Alaina with them. I was so nervous about those meetings, but they were both really kind. Tennessee State Representative Clay Doggett contacted me to let me know he would like to be our bill sponsor. Roddey’s Senator, Bo Watson, signed on as our Senate sponsor. I will admit I did a great deal of crying throughout the process. Lauren, Roddey, and I worked to draft the language for the bill. I will never forget the day we hit submit on the bill language. I cried—could this really be happening? Were we finally going to get Alaina off the bathroom floor and living her best life out in the community?
The next time I cried was when we received our bill number, and I saw it published on the Tennessee General Assembly page. Every Monday we had a Zoom call that included us and many of the disability organizations in Tennessee to discuss strategies. We asked Tennesseans to write letters explaining the need for adult changing tables—we asked them to tell their stories. You see, that is the starting point of advocating—sharing your story.
We received letters from all over the State. I continued to post on the Changing Spaces Facebook page to work on awareness. The Tennessee Council on Developmental Disabilities sent a videographer to our house to do a video on our story. This video was shared all over the State and with legislators. I, along with others, wrote lots of Op-Eds for newspapers across the state. Several news stations covered our story, and the Tennessee Council on Developmental Disabilities took our billboards across the State to raise awareness. Each time the bill was scheduled to go before a committee, I looked up the members of the committee so I could personally email each one of them. I read their bios so I could personalize my story in a way they could relate. Maybe it was a legislator who was involved in a horse organization—then I would share where we had to change Alaina when her sisters were at the State 4-H Horse Show. Our stories connect us, and that connection leads to action.
Alaina and I testified before the Tennessee House and the Senate about the need for adult changing tables, and while it passed every committee unanimously, there was a huge fiscal note attached to it. At the suggestion of my state representative, we decided to shift gears from a mandate to a grant program and asked the Tennessee Department of Transportation (TDOT) to install adult changing tables in all rest stops and welcome centers, and the Tennessee Department of Environment and Conservation (TDEC) to install them in all state parks. TDOT was willing to do this without legislation, and my state representative had a House Joint Resolution for the state parks that passed unanimously. We then asked the General Assembly for a $500,000 grant for businesses and municipalities to install adult changing tables in public family restrooms across the state. The General Assembly came back and said they would offer a grant, but instead of $500,000, they gave us a $1 million grant—doubling what we had asked! In 2022, my husband, Kevin, and I traveled to Washington DC for meetings to talk about the need for adult changing tables, this included meeting with our Tennessee US Senators.
When I sat down in Lauren’s office after my orientation, I had absolutely no idea what I was doing. I just knew our family had a need—a need that people really do not talk about, and that I had to do something. I had to learn about the legislative process—how a bill becomes a law. This is where Schoolhouse Rock’s “I’m Just a Bill” is helpful to recall. I had to learn the language. I had to learn when to compromise and when to stand my ground. The tables being powered height adjustable and, in a family/single occupancy restroom was an area I was not willing to back down on. At first the entire process was scary, and I will admit I often felt like I was out of my league. But Alaina and many others were counting on me. All I had to do was share our story—be willing to speak up and share the need. When I started this process, many people had never heard of an adult changing table or even knew there were people in their community with the need. Now, they were not only learning about the need, but they were starting to look for adult changing tables when they were out in the community. This made them want to take action and help families in their communities. Advocating can be confusing and even scary at times, but I did it and so can you. We all have a story—all you have to do is share it. It might be sharing your story on social media, with your local media outlets, with your local officials, or even with your State legislators. Sharing our story resulted in a $1 million grant for adult changing tables.
Our family has had the pleasure of attending ribbon cuttings for restrooms—yes, I know that sounds odd to have a ribbon cutting for a restroom, but that restroom is changing lives and liberating people. We have been traveling the state to personally see the tables installed and thank those involved in each and every installation. Every powered, height-adjustable adult-size changing table makes a difference to someone. Because everyone deserves dignity.