Lemons to lemonade

Richard Weingarten turned the challenges of his lived experience into positive systemic change

Richard Weingarten was 28 years old when the life he’d imagined crumbled before his eyes.

“Stanford psychiatrist Irvin Yalom said depression was often the result of losing a special project, or a special person,” says Weingarten, remembering that devastating time almost 50 years ago. “Both happened to me at once. I was in great despair and I didn’t know what I wanted to do with myself.”

In 1974, he was in the graduate program in Latin American studies at the University of Texas, which he’d entered with a passion for the subject after a post-college stint with the Peace Corps in Brazil. But when his four-year romantic relationship with a woman from Brazil ended and she returned to South America, Weingarten withdrew from the program, moved to Boston and fell into a deep and relentless clinical depression with sporadic episodes of persecutory delusions.  Some days he was fine and functional, others he felt his life was at risk because of he was Jewish or he could barely muster the energy to get out of bed.

The next 12 years were a struggle. Weingarten’s family members, who didn’t understand mental health or psychology, were unsupportive. His father, a workaholic, thought his son was simply lazy and felt that if he just got a job and applied himself, his problems would go away. His sister later confessed she’d withdrawn because she “didn’t want to catch” what he had. Weingarten himself refrained from contacting college friends because he was embarrassed for them to see him in such poor shape.

“I think so many people who have mental illness, who were functioning well before its onset, have this feeling of shame and humiliation that the illness is not allowing them to function at their old level,” he says. “When you’re really sick, the social stigma that’s out there gets internalized. You feel you’re not as competent as you used to be, you can’t carry your end of a conversation or you’re angry because all these things are happening outside of your control and you limit yourself.”

In Boston, he went into therapy with a psychiatrist who Weingarten credits with instilling a sense of hope that would sustain and propel him in the years to come. Rather than treating him as “a sickie” and turning immediately to medication, the doctor treated Weingarten with respect and interest, sharing their mutual enjoyment of running and encouraging him to become involved in his own treatment by learning to identify the triggers that threw him into tailspins. The message he conveyed was that, while he recognized Weingarten’s self-image had taken an enormous blow, he firmly believed he had a strong constitution and, by discovering and fueling his strengths, he would be able to gain mastery over his mental challenges.

“He gave me a lot of hope that, even though I was really struggling, I would be able to overcome my illness and return to the active life that I had before I became ill,” Weingarten says. “He was somebody who really understood me. And by helping me learn to monitor my feelings outside therapy so I could see what was happening to myself, he also had a strategy for my recovery.”

Though his ongoing depression made it extremely difficult for him to know whether he’d wake up in the morning with dysthymia or some level of energy, Weingarten continued working part time jobs to make ends meet. Several of those involved using his fluency in speaking Portuguese, which allowed him to teach at a high school with a bilingual English/Portuguese program,  work with disadvantaged Portuguese-speaking students adapting to America and produce and direct a Portuguese news and variety television show.

“It was a difficult, very difficult, but I didn’t give up on myself,” Weingarten says. “I thought that, as my doctor said, I would be able to develop enough strengths to move beyond the illness.”

After four years, he moved to California to finish graduate school at Pacific Coast College, this time pursuing an early childhood education degree with the idea of teaching young students in an “open classroom” environment. But, during his first field placement in a school, he quickly learned that his depression did not grant him enough energy to keep up with the children, so he changed his major to human development.

His mental state continued to be erratic. Misdiagnosed by another psychiatrist, he was put on Lithium, a mood stabilizer that ended up exacerbating his condition. Brief bouts of psychosis sent him to the hospital four times. The psychiatrist in Boston, with whom he remained in touch, suggested he’d been given a faulty diagnosis and was taking medication that wasn’t appropriate. Relieved at the reprieve, Weingarten “like an idiot” went off the Lithium cold turkey and ended up in the hospital again.

Eventually he was weaned off the Lithium and put on a more appropriate drug, with which he “began feeling much better about my prospects.” After a move to Cleveland, he spent the next three years working a variety of part time jobs, including as a reporter for the Cleveland Jewish News and as a mental health outreach worker (in his role as a consumer) for Jewish Family Services.

Then he returned to teaching Portuguese, beginning with a continuing education class through John Carroll University. That evolved into his being offered a one-year faculty position teaching Brazilian culture at the college. He also began speaking in public for the first time about his mental health struggles.

“That gave me a lot of confidence that I could not only tell my story in a way that could help other people,” he says, “but made me feel good that I could see this experience in a more positive light.”

Referred by an agency to a mental health organization looking for a part time employee, he became involved with a consumer group called COPE (consumer organized project effort) that was putting together a discharge directory of services for patients coming out of the hospital after a mental health crisis. For eight months, not only was Weingarten was given a desk, a phone, a typewriter and clerical support to facilitate his inquiries to agencies and programs in Cleveland, he was treated with respect, friendliness and gratitude by other members of the staff, who often brought him, or invited him to lunch.

At the same time, he joined a spiritual community, got involved in an “underground railroad” program that assisted Central American refugees, began facilitating peer support groups and started a romantic relationship.

“All these things came together and I felt myself becoming a social person again,” he says. “I wasn’t just isolated within the four walls of my apartment. It was a big change and I felt very confident that I could move ahead with my life.”

Weingarten had attended a liberal arts college in the late ‘60s, a time of dramatic social upheaval and student activism that instilled in him a desire to be “an agent of social change.” After graduating, he’d gone directly into the Peace Corps, where he’d worked on a number of community projects while also pursuing an interest in journalism by serving as a Brazilian foreign correspondent for United Press International.

Despite his mental health challenges, he’d never lost touch with that desire to become a change agent.  Now in his mid-30s, he decided that he enjoyed working in the mental health field more than any of his other endeavors and embarked on a strategic two-year national job search to find the right position in the field. Knowing that New England agencies had begun hiring people with lived experience to work in its mental health systems, he focused his efforts there. Eventually, he applied for and was offered a newly-created position as Director of Peer Support at the Connecticut Mental Health Center. He packed up his life’s belongings in a U-Haul and moved from Cleveland to New Haven.

“I still had this desire to be someone making a difference in the lives of other people and moving the ball forward,” he says. “I was always thinking, ‘I could be more effective…’ or ‘I could be working on a larger scale to help more people…’ or ‘I could be working with people on the cutting edge.’ That was very strong inside me and it was really the driving force.”

Several of the programs Weingarten created at the agency based on his lived experience are still in force today. One, called The Welcome Basket (after the “Welcome Wagon,” which familiarizes new residents with a community they’ve just joined)  provides people coming out of a mental health hospital with a basket of useful items (toiletries, fruit, bus passes) as well as a peer mentor to connect them with services and supports in the community. The program also provides weekly social outings, with transportation and cost covered. Research showed that consumers were 2/3 less likely to be re-hospitalized as a result of this program, or if re-admitted, to have radically shorter stays and it has since been replicated around Connecticut and as far away as Canada.

Another program, called Peer Support in the ER, did away with the practice of tying down people in crisis on gurneys in the emergency room as they waited, sometimes six to eight hours, for a psychiatric evaluation. Instead, at Yale New Haven Hospital, as well as elsewhere, patients are now escorted to a quiet, secluded room near the ER where a peer greets them with food and drink, reading material, a place to rest or a friendly ear to listen.

Recognizing the importance for anyone to be productive and have meaningful work, Weingarten also initiated a “consumer grants” program that allowed people with lived experience to apply for grants in support of a project of their choosing that would move them forward in their recovery. One man started a tap dance school for children; an Italian woman started a cooking class; a musician who’d lost his cello got a new instrument that allowed him to play and perform again. Twenty-five of the grants awarded to 26 applicants in the first year were successfully completed and the program soon more than quadrupled in size. (Unfortunately, due to budget cuts in recent years, it has since been eliminated.)

Weingarten, who was also working with Yale psychiatric residents and post-doctoral fellows, sharing his story and helping them understand peer support, was so successful and respected he was given a faculty appointment to the Department of Psychiatry in the School of Medicine at Yale University. He also became an adjunct faculty member at a nearby college in Bridgeport, as well as a board member of NAMI (National Alliance on Mental Illness) Connecticut.

In 2003, President George Bush formed a Presidential commission to make recommendations about best practices in the mental health field. The end result was an emphasis on recovery as the goal of mental health programming, rejecting the illness- and crisis-based models of the past in favor of giving people opportunities and skills to be defined by something other than their illness.

That’s a philosophy Weingarten has continued to espouse and work toward even since his retirement in 2009. Based on the “In Our Own Voice” program at NAMI, in which peers are trained to present the story of their mental health journey and successful recovery to others, he has worked to bring similar programming to Brazil, adapting it to the local culture and traditions. Called “Communidade de Fala,” (“speaking up community”), the program now exists in four Brazilian cities and will soon be added to a fifth. It has also been replicated in Portugal.

At present Weingarten’s efforts are focused on a local television program he produces in New Haven, which brings together his twin passions for mental health and journalism. His guests on the program, which is called “Mental Health, Wellness and Recovery,” have recently included many people affected by the Covid-19  epidemic -- doctors, therapists, teachers, a musician -- talking about how they have dealt with the increased mental health stress they’ve experienced during the pandemic.

Though the practice of employing people with lived mental health experience to work with peers is still spotty – the East and West coasts have adopted the practice more universally than the country’s mid-section, Weingarten says – he believes it is the best possible route to recovery, for a number of reasons.

First, having someone who can talk about something that was a personal struggle creates an intimacy with others going through similar challenges and plants a seed that says, “Oh, if you could do that, I can too.” Peers can also share their successful experiences in navigating a mental health system that is often fragmented, broken or difficult to access.

Second, Weingarten says, mental health professionals are still often trained to dictate to patients rather than work collaboratively. That kind of paternalistic attitude doesn’t sit well with many patients or convince them to be compliant.

Third, people with lived experience bring a passion and commitment to their work that others may lack because in helping others, they are also helping themselves.

“Their motivation level is very high,” he says. “Because you see you can make a difference and that’s a real game changer for you. People with mental illness are very creative. Working outside of the box, when it’s used in the mental health system, is very helpful and successful. You’re getting people who’ve reinvented themselves and they can show other people how to do that for themselves.”

That’s what Weingarten did and, looking back, he’s pleased with the result. He was able to have a long, fulfilling and impactful career, despite a condition for which he still takes medication. The key, he says, lies in taking personal responsibility for creating a life that’s true to yourself and your interests, even as you accept the realities of your illness.

“I think people have to do an assessment of their own skills and strengths and, when they find them, follow them into the activities and jobs that make sense for them,” he says. “When you have an illness -- you’re unemployed, you’re living life on the margins of society -- it’s critical not to forget who you are. Remember what you want to do with your life, what your values are and what you think you could to do make a difference in the lives of other people.”