The unstoppable Steven Tingus

Although born with this rare form of muscular dystrophy, Tingus’ parents weren’t going to let that diagnosis stop them from providing him all the love and support he needed to live his life to its fullest — no matter the difficulties. They remained strong for their son through his multiple surgeries as a youngster, provided him with 24/7 care and embodied the unbreakable familial bond Greek families are known for.

“The love was so unconditional and so strong that there was nothing that could stop my mom and dad and Steven from making sure he lived the best, quality life and most fulfilling life he possibly could,” said Tingus’ sister, Tina Harris. “I think that foundation of my mom and dad’s strength at that time, Steven felt it, he knew it and thought, ‘I’m going to run with this. I know I got the love and support behind me and I’m not going to be afraid and am going to fight this and live the best life I can live.” From that point forward, my parents never treated Steven any differently from myself and my brother, Mike.”

While Tingus’ life was flooded with family support, the ’70s weren’t known as a time with many resources or opportunities for people with disabilities. He attended Bowling Green School in Sacrament0 — a school for disabled students — but was more than capable of attending and receiving a standard public education. His parents and teachers fought tooth and nail for Tingus to become one of the first disabled students to be mainstreamed into public education, in 1974.

From Bowling Green, Tingus headed to Pioneer Elementary in South Davis — however, the administration at the time informed Tingus’ mother they had no ramps for her son’s wheelchair. Unfortunately for them, they should have known better than to doubt this mother bear’s dedication to her cub.

“I’ll never forget that my mom went to Davis Lumber to buy a bunch of plywood and hardware and built a wood ramp herself,” Harris recalled. “I was just a little girl, but I was in the van and remember it like it was yesterday. My mom opened up the door of the van, put the ramp on the stairs and goes, ‘Here’s your ramp.’ She took Steven out of the van and rolled him up to his classroom. That’s where it all started for Steven.”

Devil and Aggie

Tingus went on to attend Holmes Junior High before sporting the horns of a Davis High School Blue Devil. There, he fell head-over-heels in love with theater which only bolstered his preexisting love for Hollywood. Far from finished with the education Davis has to offer, Tingus went on to attend UC Davis where he not only got a bachelor’s degree, but a master’s and a Ph.D as well. While it was at DSHS Tingus developed his love for theater, it was UCD that sparked his fire for politics and advocacy for disability inclusion.

After UCD, Tingus became a healthcare policy analyst for the state of California Department of Health Services and was the director of Resources Development at the California Foundation for Independent Living Centers Inc. Not long for the West Coast, Tingus moved to the east coast and served under President George W. Bush for six years as the director of the National Institute of Disability and Rehabilitation Research, and two years as the deputy assistant secretary for planning and evaluation at the U.S. Department of Health and Human Services.

With seemingly endless amounts of accolades and achievements requiring 25 hours of work, eight days a week, Tingus never lost touch with his family, stopped being an amazing uncle to his nieces and nephews or being an inspiring older brother to his siblings.

“I remember going out to play and Steve would be inside reading newspapers or Time Magazine. But we’d always go out and I’d take him around on his wheelchair, run him around and do stupid things. He’d make me take him around the neighborhood and we’d throw rocks at the new homes being built. It was all Steven’s idea, but it was so much fun,” Mike Tingus recalled the shenanigans he and his older brother got into.

“It’s funny, I’ve always called him my hero. He goes from working with Bush, then moves down here to Los Angeles and lives with me and had so much fun with his caregiver and my kids. I never had to worry about him having a social life either. He had plenty of friends and people who loved him. But the moral of my story is, my brother’s always been my hero because I never quit. I did my best and grinded it out because there was no way I could look at the hand my brother was dealt, and how he played it, and do nothing. I use him as an example of what people should do with their life every day.”

Going Hollywood

According to Harris, her brother’s motto was “can’t stop, won’t stop.” So, rather than stop his advocacy for disability inclusion after Bush’s tenure as president, he took it to Hollywood. There, he met writer, producer, director, actor, and CEO of Urban Renaissance Entertainment, Marcus Hamm. The two became immediate friends and began their creative work together.

“I think he saw film and television as such a powerful medium to get his message out, and more importantly, he had the childhood dream of being in front of the camera and this is all he wanted since he’s been in Hollywood. He would always thank me for being the one who actually followed through because a lot of people talk a big game – and credit to those who had agreed to put him in projects – but I was glad we were able to work in a way that put him in the forefront,” said Hamm.

“I haven’t met anyone like him before. From the disability standpoint, I was in a wheelchair many years ago following a bad car accident. From that experience, I relate to other individuals who have any forms of incapacitation. But after meeting him, he just inspired me. You never know what to expect from someone when you’re not familiar, and after conversations and hearing him talk, he was crass, funny, brilliant and most importantly for me was his persistence. He never backed down.”

Like raising anybody, it takes a village. Fortunately for Tingus, his village happened to be Davis, with family and friends who knew nothing but love and support for one another. Some of the most impactful support came from Tingus’ caregivers. After 38 years of nonstop caregiving from his parents, he was cared for by Juliette Fon in Washington, D.C. When Tingus moved to L.A., his caregiver was Olympia Concha. Both of them — coming as no surprise — became best friends with Tingus and part of the family.

From going beyond a three-year life expectancy, to trailblazing a path for disabled students in public schooling, to advocating for disabled inclusivity in Washington for the president of the United States, to acting in numerous shows, music videos and movies, to being a hero, uncle and friend, the last thing Steven Tingus would be described as is disabled. And it all started with unwavering love from parents, friends, family and the community he was raised in.

— Reach Aaron Geerts at aaron.geerts@mcnaughton.media.

Read more:

Death notice: Steven James Tingus

Tingus’ disability advocacy turns to Hollywood

DHS Hall of Fame: Changing the world, one wheelchair at a time