By Moryt Milo
Getting beyond the stigma of mental illness for those living with a diagnosis starts from within says Robert Villanueva — and for Villanueva that self-stigma ran deep.
He never saw himself as anything more than a blue-collar “garbage man” out of high school. He had no formal education. And even though he was a wrestling coach for 13 years, it all came crashing down when he became symptomatic and was diagnosed with bipolar disorder.
“I had to figure myself out,” he said.
At the time, he had little self-worth and felt people were looking down on him. He needed help to break through the self-stigma barrier. Villanueva had good psychiatric care, but he needed to understand what was happening and to accept that he had a mental illness.
“Once you get past stigma, it’s like your superpower,” he said.
What helped was telling his story to others, especially to the blue-collar community. As he shared his experience and helped others with mental illness break through their self-stigma, he started to accept and recover.
“I consider a mental illness a blue-collar weakness, because of my background as a garbage man and driving trucks,” he said at NAMI-Santa Clara County’s General Meeting on September 8. “I want to reach out to the blue-collar community. Get in there and really open up the dialogue and let them know. I don’t want to classify or stigmatize certain groups. But I do think there is a lack of focus on the blue-collar communities.”
For Villanueva, his life changed at the Second Annual Bay Area NAMIWalk when he met John and Gini Mitchem, longtime advocates in the mental health sector and major supporters of NAMI-SCC.
“They sponsored me to go back to St. Louis, when I was still trying to figure things out, and they paid for my training,” said Villanueva, who was 32 years old at the time. “I mean they knew me a little bit, but they had that much faith in me. They were perfect strangers.”
At the time Robert met the Mitchems, he was sleeping in a friend’s back room, with $180 in his bank account. Yet, he knew it was an incredible opportunity.
“I had never been to St. Louis. I hadn’t traveled. I was with some incredible people and became a state trainer,” he said.
It was an incredible moment in his life. When Villanueva returned, he and Christopher Fontes, who Villanueva credits with pioneering In Our Own Voice (IOOV), started the Trainer of Trainers program in California.
The program was in its infancy. Today, certificated trainers teach new teachers, presenters, and facilitators for signature NAMI programs. Back then, IOOV was more of a concept.
Just two people traversing the entire state trying to affect change. They built out the infrastructure, and trained others on how to unmask mental illness by talking about their lived experience in the community. The program gave the trainers a better grasp on what it was like to live with a mental illness and stay in recovery, as well as how to tell their story to the community.
Although NAMI National adopted the overall model in the early 2000s, local implementation needed specialized leaders — certified “Trainers of Trainers” — to teach peers living in recovery how to safely and effectively share their personal stories.
In 2005, Villanueva was given the responsibility to help make that happen, when he took on the role of National and California State Trainer of Trainers for NAMI’s In Our Own Voice program.
“In Our Own Voice was the foundation, for sure, for me,” Villanueva said.
He points out that about 20 years ago, the mindset was that people with a mental illness were not dependable, not able to hold a job. But that has been changing through all the work done at NAMI. There is a foundation of empowerment and trust, he noted.
Yet, Villanueva said creating a safe community with people that are supportive is critical, especially in a work environment.
“I do have peaks and valleys still. I have breaks at times and have coping skills that can get me through them,” he said.
Today, his life is full. Villanueva collaborates with researchers, academics, and policymakers in the United States and internationally. He chairs the Lived Experience Advisory Board for the “Healthy Lifestyles in Bipolar Disorder” research at the University of California, Berkeley’s CALM program. He also continues to work with Sheri Johnson Ph.D. and Stephen Hinshaw Ph.D., recognized clinical psychologists and researchers in the field of behavioral health.
His philosophy about his life is simple. “I’m pretty much an open book, and I want to be an open book because I want students to ask questions about bipolar disorder that aren’t in the books, that are personal.”
To watch Robert Villanueva’s presentation, click here
