JOHNSON CITY, Tenn. (WJHL) — She’s been an outspoken voice for disability rights since her teenage years, and now, Courtney Johnson is taking that voice to Nashville.

A 2022 East Tennessee State University (ETSU) honors graduate with multiple disabilities, including autism, Johnson will start a three-year term on Tennessee’s Council on Developmental Disabilities after being appointed by Gov. Bill Lee.

Johnson didn’t pull any punches about her expectations during a Monday interview with News Channel 11, saying she’s going into the role with a mix of hope and skepticism.

“I certainly hope they’re sincere, but it’s honestly hard to know,” Johnson said of the group, whose first quarterly meeting she’ll attend on September 15.

Courtney Johnson. (Photo: WJHL)

“Support is more than just public statements or tax-deductible donations. It’s showing up to those legislative sessions and taking action. It’s genuinely listening to our concerns and not just thinking about the next meeting the entire time. Sometimes I worry that the actions become more of a way to avoid negative optics, but I do hope for the best.”

Johnson has certainly built a strong resume as an advocate. She said as the sibling of two autistic brothers and someone who herself has a traumatic brain injury, “I was always involved within the disability community in some way or another.”

She called her involvement with the autism community a catalyst for her involvement. One of her brothers, Liam, died at age 7. He would have been 12 on Monday.

Her involvement picked up when Johnson came to ETSU from a small town in Middle Tennessee to start college in 2015. She took a couple of medical withdrawals but graduated after seven years of hard work. By then, Johnson had co-founded ETSU’s Neurodiversity Club and started the website, which bills itself as “an autistic adult’s perspective on navigating chronic illness, life and the autism spectrum itself.”

It became more than she might have expected, and now includes active social media accounts–especially on Instagram.

“I guess a lot of people seem to find a website impactful, which really surprised me,” she said, using a communication device through which she types her answers and which speaks for her.

“I wrote about my experiences as an autistic adult navigating college as well as other aspects of everyday life. It was just a way of processing my journey and hoping to help others along the way. Things from explaining sensory meltdowns to showing communication options, it seemed to resonate with others.”

While she’s grateful to represent the eight counties of the Northeast Tennessee region for the next three years, Johnson said she’s got no plans to change her approach, which involves fierce advocacy when she thinks it’s warranted.

According to a state news release, the Council on Developmental Disabilities is a state government agency that works to improve services and supports to make life better for people with developmental disabilities and their families. Johnson said Tennessee has made some good progress during her adult life.

Courtney Johnson on graduation day from ETSU in 2022. (Courtney Johnson)

“Some of the things that have been the most impactful are things such as the Katie Beckett waiver, the grant for the adult changing tables, and a focus on self-determination and community inclusion,” Johnson said.

But presenting at conferences to joining the D.C.-based Autism Campus Inclusion program has allowed Johnson to see how far there is to go toward full support and inclusion for people with disabilities, she says.

“I definitely am hoping for an improvement in the home and community-based services programs,” said Johnson, who has home-based services paid through the TennCare-based Employment and Community First CHOICES program.

“I’ve lost a few wonderful support staff because of the low wages or lack of benefits. It’s very upsetting because these people are our lifeline. They deserve so much more than what they get and it’s a little disheartening. We have a staff shortage for support workers not because people don’t want to work, but because it’s not enough for them to stay afloat.”

She supports the council’s five-year plan to develop leadership, improve policies and practices and work to share that information publicly.

Johnson invited News Channel 11 into her small Johnson City apartment during a visit from her fiancee, Christopher Gibson. Gibson, who lives in England, and Johnson met in 2016 in a Sci-Fi chat room. Her cats Leia and Sheridan were there too, along with Aly Vice, who is one of her personal caregivers.

She expects to continue her role as the state’s site coordinator for the annual Disability Day of Mourning, which is highlighted by a vigil for people with disabilities who’ve been murdered by family members or caregivers. Johnson said those horrific events represent the worst of a mindset she saw after her brother died.

“When I told them my baby brother died, they were obviously very sympathetic and supportive, but when I mentioned the autism and disabilities, it was as if a switch flipped,” Johnson said.

“Suddenly I was getting comments such as maybe it was for the best or that at least my family isn’t as stressed anymore. It really hit me just how much people see disability as a fate worse than death, or that we are a burden.”

That’s something Johnson plans to help disprove — if people need it disproven — during her time in Nashville.