Sylvia A. (not her real name) survived cancer 40 years ago. She knows what it feels like to have a disease people don’t want to talk about, one that used to be stigmatized and discussed in hushed tones.
Many years later, when she began caring for a brother who had been diagnosed as bipolar, she learned about a different kind of stigma.
“Words that come up when you have mental illness in your family are ‘crazy’ or ‘a little looney,’” says the longtime member of Sacramento’s Jewish community with frustration. “These are not words that educated people should use, but they do.
“I want mental illness to be accepted like any other kind of illness,” she says. “Just because it’s the brain, that’s still part of the body. There is all of this suffering when there doesn’t have to be.”
Julie Steinberg, also of Sacramento, believes stigma about mental illness comes from fear and, like others, invokes the C-word. “It’s like when we used to whisper cancer,” she says. “I’d like to find a different word for mental illness, like brain disorder.”
Before her daughter Jordana was diagnosed with a mood disorder, she would have childhood tantrums that would last for hours. Steinberg, who is the cantor at Congregation B’nai Israel in Sacramento, as well as a social worker and the wife of Mayor Darrell Steinberg, didn’t realize how different Jordana’s behavior was until their son, Ari, was born three years later. Yet she says she was able to see through Jordana’s extreme behavior and recognize her daughter’s “incredibleness, phenomenal mind and empathetic spirit.”
Today 24 and living successfully on her own, Jordana shared her story in 2014 with the Sacramento Bee. She wanted to publicly convey that “We’re all ‘normal.’ We are all just people,” her mother says. “She has an amazing gift for seeing people for who they are.”
According to the National Alliance on Mental Illness, or NAMI, the country’s largest advocacy group for people affected by mental illness, 1 in 5 Americans lives with a mental health disorder, defined in part as “a condition that affects a person’s thinking, feeling or mood.” The occurrence in the Jewish community mirrors the general population. With May designated as Mental Health Month, NAMI is promoting “CureStigma” as its 2018 theme.
While stigma is a major factor in preventing people from accessing necessary treatment, it also takes its toll in other ways.
I want mental illness to be accepted like any other kind of illness.
Many lay, professional and rabbinic leaders have seen how misconceptions about mental illness and addiction, which have become part of the larger conversation, can manifest in judgment and disapproval. And a tradition of high expectations in the Jewish community can heighten shame, some say.
“We have pride about how successful we’ve become in America,” says Rabbi Eric Weiss of the Bay Area Jewish Healing Center, which provides rabbinic spiritual care to those who are ill, grieving or dying. “What can subtly enter the conversation if you don’t meet the ideal is that you’re diminished. It is subtle, but potent. People feel they don’t measure up.”
The Bay Area Jewish Healing Center has been at the center of efforts to support mental health needs, pioneering several programs for communities, families and individuals. It also partners with synagogues to present conferences, offers trainings and workshops and produces community resources, such as “10 Things Your Congregation Can Do to Reduce the Stigma Surrounding Mental Illness.”
Another important source of help in the Bay Area is Jewish social service agencies, which are specifically set up to help with professional support, resources and programs.
San Francisco-based Jewish Family and Children’s Services, which also serves the North Bay and the Peninsula, has a roster of clinicians in each branch who offer counseling for a variety of conditions. JFCS also co-sponsors community forums on mental health, runs a center for special-needs children and does outreach to new immigrants who are struggling emotionally.
“Now we understand [mental illness] is a medical condition with a biological basis,” said Nancy Masters, associate director. “There are a lot of awareness campaigns to take away the stigma.”
Mindy Berkowitz, executive director of Jewish Family Service of Silicon Valley, says she has seen a shift in attitudes. “In the past decade, there has been a great tendency to talk about [mental illnesses] as diseases and ailments, and less as a person’s fault.”
While Jewish Family & Community Services East Bay has programs for children and adults who have been diagnosed with conditions such as depression, anxiety and eating disorders, as well as counseling for refugees and immigrants, the agency primarily serves the needs of a 55 and older population, including aging Holocaust survivors.
According to Rita Clancy, director of adult services, their mental health issues are unique to their age and history. “Trauma and depression could be mental health challenges, plus dementia,” she says. “It’s a complicated picture.”
While social service agencies are critical support systems, synagogues have been playing an increasingly vital role. For congregants who see their synagogue as a place of spiritual solace, it is natural to turn to their rabbis and community when facing mental health issues.
In response, many synagogues have set up programs to educate congregants and support those with mental health issues, offering compassion and a sense of safety and non-judgment. But it took years for them to get there.
One of the earliest local efforts was a 2002 conference on the Peninsula co-sponsored by JFCS, the Jewish Healing Center, the S.F.-based Jewish Community Federation and local synagogues. “Help, Hope and Healing” drew more than 100 people to Congregation Beth Jacob in Redwood City.
In 2005, Congregation Beth Am in Los Altos Hills got out in front of the issue after Jane Marcus, then president of Beth Am Women, stood before her fellow congregants on a Friday evening and shared her struggle with depression.
That led to “Shining a Light on Mental Illness,” a conference to draft a Jewish community response to mental health issues. And that led to the formation of a support group, Beit R’fuah. Marcus (who died last year) co-facilitated the group with Carol Irwin, a Beth Am lay leader.
Irwin, who still leads the group, remembers the 1990s when parents like herself who had adult children with mental illness sought support from their rabbis or other faith leaders but got nowhere. “No one was talking about mental illness. They weren’t ready,” she says.
Irwin, who became active in NAMI Santa Clara County and served on the county’s Mental Health Board for 10 years, says Beit R’fuah “is for family members dealing with all major illnesses, including schizophrenia, bipolar disorder and depression. That’s what people are dealing with. They are long-term biological disorders that need treatment.”
She adds, “It is important to acknowledge that we have people in our congregation who experience mental illness that may make it difficult for them to be part of the community. When you become inclusive, it really helps people who feel stigmatized to break down the barriers and say, ‘I’m accepted here.’”
As Beit R’fuah (House of Healing) became more established, other congregations began following suit. In 2009, Congregation Beth Sholom in San Francisco created a support group as part of the Nachamu (Comfort) Network, and Temple Isaiah in Lafayette hosted a conference for the wider Jewish community that attracted 200 people. Out of that came P’tach Libeynu (“Open Our Hearts”), a monthly support and educational group that is still active.
Another leader in bringing mental health issues into the open is Congregation Rodef Sholom in San Rafael. This effort began with a series of triggering events: First, there was the 2014 suicide of Robin Williams, an iconic public figure in Marin County. Then, in a 2014 Kol Nidre sermon, Rabbi Stacy Friedman disclosed her stepfather’s suicide and spoke openly about the need for healing. At the same time, nearly 100 people responded to a call to action to discuss how the community could be a safer and more welcoming place.
A steering committee emerged with the mantra “Nothing about us without us,” to reflect the importance of involvement by all who are impacted by mental health challenges. Thanks to funding from a congregant’s family foundation, the REAL Mental Health Initiative was established. Led by program coordinator JoAnne Forman, REAL has created partnerships with mental health experts and organizations and is providing ongoing programming, such as an annual thematic speaker series, screenings of movies such as “The S Word,” which tackles the issue of suicide, and storytelling as a way for people to share their experiences.
“The greatest impact [of REAL] for me is seeing people who 10 years ago were struggling to find a home here because of their own mental illness or caring for someone. They drove away from the synagogue. It was the last place they would come,” Forman says. “Now when we have a congregant who asks for help, we have so much more to offer.”
One woman said the REAL Initiative shifted her view of her synagogue as primarily a place for religious activity to an open-minded space where she is able to receive support for parenting her younger son, who has faced a “basket of things that have made his life challenging.” Referring to Friedman’s sermon, she says, “Stacy tapped into something that was simmering under the surface. You realize people are going through a lot. It’s so personal and painful.”
She now runs a REAL parents’ support group every month. “We get it, because we’ve all been through extraordinary times. It’s like a roller coaster.”
More recently, Peninsula Temple Sholom in Burlingame launched Panim-el-Panim, an initiative to support “the inner spirit of teens and young adults” who are struggling with mental health issues. Its focus is working with other religious communities to address the issue from a faith perspective. PTS held a “Multifaith Day of Learning” early last year that drew representatives from nearly a dozen religious organizations and 200 attendees.
Several rabbis have used the power of the pulpit to raise awareness about mental health and addiction, often on the High Holy Days when they have a full house.
Rabbi Judy Shanks, who recently retired from Temple Isaiah, spoke a few years ago about Yom Kippur as a day when “we make the invisible visible, when we reveal the hidden, because our community is meant to be a safe harbor in life’s turbulent seas, a place where secrets can be shared and where compassion and acceptance are found. Mental illness is one of those secrets which cannot and should not be ignored or denied, as uncomfortable as it makes us.”
During last year’s Rosh Hashanah service, Rabbi Reuven Taff of Sacramento’s Mosaic Law looked out over his congregation and said, “I am speaking about mental illness because for more than 22 years as your rabbi, I have seen just how many lives it affects… I have seen so many who suffer from mental illness alone and isolated, looking for a way to connect.”
During the sermon, Taff announced the formation of the Janet Abrams White B’Tzelem Elokim Program (In the Image of God), named in memory of his sister-in-law. The group meets monthly to support those dealing with mental health or aging issues.
Judy Abrams Kahler Taff remembers her sister Janet as a class valedictorian who sang and traveled with her choir, studied opera, played piano and received a four-year college scholarship. But her life began to unravel during her senior year of high school, and she eventually was diagnosed with schizophrenia.
Judy took over her sister’s guardianship from her parents, enduring the emotional hardship of caring for a loved one with mental illness. “My father was an Army pilot and fought in three wars,” she says. “He was a strong guy, but this was crushing to him. He could not accept that it would never get better.”
The support group has helped turn her late sister’s struggle into something positive. “It’s a place to be heard, a place to share the pain, a place to find out that you’re not alone and a place for advice and resources,” she says. “I think Janet would feel honored.”
Rabbi Alan Rabishaw of Temple Or Rishon in Orangevale, near Sacramento, spoke about mental illness at his High Holy Day sermon two years ago. He said congregants had come to him over the years to talk about their issues but didn’t find the temple to be a place of love and support.
TOR congregant Darrin Guttman was listening that day. At the time, he was grieving the loss of a friend’s 18-year-old son who took his own life, and thinking about his own wife’s history of clinical depression.
“When the rabbi started his sermon, he asked, ‘If you have ever been affected by cancer, raise your hands. If you have ever been affected by mental health, raise your hands. If you have ever been affected by addiction, raise your hands.’ One-third of the hands were raised. As many people who were affected by cancer were also affected by mental health.”
Guttman went on to head Machalot HaNefesh (“Diseases of the Soul”) support group at TOR, which speaks to the whole of mental health and addiction.
“We can use the word community all we like, but when people are walking in darkness, they need our help,” Rabishaw says. “It’s not about smiling at someone at an oneg. It’s about when life hurts and people don’t want to come to the oneg.”
Doug Robins, a past president of TOR, says he has experienced depression and anxiety since he was a teen. Though he thought he was managing well, a stressful work situation in 2011 triggered a debilitating downward spiral. “One morning, I got up to exercise. I just couldn’t do it. I climbed back into bed and told my wife, ‘I need help.’”
Robins shared his story from the bimah, describing the experience as “coming out” to 500 friends, congregants, and strangers.
“I was motivated to speak to raise awareness since I knew a lot of congregants who were dealing with similar issues,” he explains. “I also wanted to be honest and open and say, ‘This is who I am. I am not ashamed.’”
Self-acceptance and community acceptance go hand in hand.
“Our strength is in knowing one another, not hiding from one another,” says Weiss of the Bay Area Jewish Healing Center. “We now have a robust understanding of how brains function. We want to get to where there is communal ease about engaging issues, not in hushed tones, but in a full voice about what’s at the depth of our souls.”