Facing the Music

Immediately after the January shooting of U.S. Congresswoman Gabrielle Giffords (D-Arizona) in Tucson, the media focused on the nation’s polarized political climate as a likely culprit. But the focus of attention soon shifted to the shooter, who purportedly suffers from schizophrenia, with the mere suggestion of his mental condition frequently used to counter the narrative of political polarization.

Meanwhile, often lost in the debate was the question of how to respond to serious mental illness as something other than a potential source of blame. A RAND Corporation panel discussion — “From Management to Recovery: Emerging Approaches to Serious Mental Illness” — tried to shift the focus once again toward healthier ways of addressing serious mental illness.

Paul Koegel, associate director of RAND Health, moderated the panel. It featured Steve Lopez, the Los Angeles Times columnist who chronicled the mental health struggles of musician Nathaniel Anthony Ayers in The Soloist: A Lost Dream, an Unlikely Friendship, and the Redemptive Power of Music; Ted Sapp, executive director of the Nathaniel Anthony Ayers Foundation; Ron Schraiber, a consumer activist now working for the Los Angeles County Department of Mental Health; and Alex Young, a psychiatrist and researcher at RAND and UCLA who also directs the Veterans Administration Desert Pacific Mental Illness Research, Education, and Clinical Center in Los Angeles.

A Faint Voice

While many of us in urban areas are likely to see serious mental illness right in front of us on our way to get coffee in the morning, few of us really stop to look. Six years ago, Lopez did, on his way to work. “I was transfixed by the music coming from a man playing a violin that was missing two strings. He was next to a shopping cart with all his possessions.” As Lopez recalled, the shopping cart had “Little Walt Disney Concert Hall” written on it.

That man — Nathaniel Anthony Ayers — was a musical prodigy who had attended the Juilliard School. But he developed schizophrenia during his third year, which led him to drop out of Juilliard and, ultimately, out of mainstream life and into homelessness, where Lopez found him on Los Angeles’ Skid Row.

Thus began a journey for Lopez. “As I got to know him, I naively thought I had all the answers — that I could figure out what was wrong with him, find a quick way to fix him,” he said. “But I discovered I was ignorant of the reality he was dealing with.” Lopez also discovered that clinical professionals had very different ideas about how to treat Ayers, ranging from various medications to the belief that involuntary hospitalization and treatment was the only answer.

Lopez ultimately gravitated toward the Mental Health America Village in Long Beach, which uses a recovery model that focuses on “treating and respecting the whole person.” Although frustrated by Ayers’ seeming lack of progress in recovery, Lopez has since come to look at the situation differently.

PHOTO BY DIANE BALDWIN

Nathaniel Anthony Ayers, subject of the book The Soloist and the movie of the same name, performs for a RAND audience in Santa Monica, California, on January 26, 2011. He played guitar, cello, violin, and trumpet.

“I learned to just be his friend, not his doctor, and to not expect any changes. I’ve learned from him about faith, courage, and the human power of the arts. He’s got the passion and love we’re all after, and he’s at peace when he’s in his music.”

Listening to Each Other

Both a consumer and provider of Los Angeles County mental health services, Schraiber has been diagnosed with everything from paranoid schizophrenia to bipolar disorder. He stressed that those who suffer with severe mental illness “want to be recognized, like anyone else, as human beings, not as a mass of symptomatology.”

A mental health activist for decades, he also stressed that “there is still a culture-bound belief system that affects the relationship between the helpers and the helped. The status quo, despite all the stakeholders involved in the system, still entails a reaching down — which makes you feel ‘one down’ — rather than a reaching across in partnership.”

There has been progress toward building this partnership over the past 15 years, according to Koegel, of RAND. “Managing symptoms is not viewed as enough any longer. The real goal now is enabling the seriously mentally ill to lead meaningful lives, realize their potential, be accepted into communities, and have a real say in their treatment.”

Young, the psychiatrist, added that the possibilities for recovery for people with serious mental illness have also blossomed. “We now have supported employment that enables over one-half the people with serious mental illness to return to jobs, and family interventions that allow families to take a serious role in treatment.”

In his efforts with the Ayers Foundation, Sapp noted that he is “helping to bring to scale some very innovative approaches, including a concept called Nathaniel’s Place that gives artists who suffer from serious mental illness an opportunity to stay connected, share their gifts, and interact with other artists who serve as mentors for them.”

The science has also improved, according to Young. “We better understand the biology of illnesses, of why people have a hard time functioning even though we have medications to help with symptoms. We’ve learned that there are cognitive issues unrelated to symptoms that affect people’s ability to function socially and interpersonally in the workplace.”

Many Fail to Hear

While the possibilities for recovery are promising, the realities are still sobering. “When we give people a package of options to choose from and educate them about what their options are, improvement can be remarkable,” said Young. “But most people with serious mental illness don’t receive anything like that in this country today.”

Stigma remains a huge impediment to change, according to Schraiber, as the stereotypes that emerged during the Tucson shootings confirm. Such stigma is “just a euphemism for prejudice and discrimination,” he said. “Not only does it make the lives of the serious mentally ill miserable, it also keeps them from seeking the treatment that could make their lives better.”

Even more pointedly, Lopez noted, “Those with serious mental illness who do not — or cannot — get treatment might be more prone to the kinds of violent behavior we saw in Tucson. Rather than promulgating stereotypes about schizophrenia and violence after the attack, the media should have been talking about the growing likelihood that treatment for the seriously mentally ill is at severe risk in the current budget climate.”

Multimedia:

From Management to Recovery: Emerging Approaches to Serious Mental Illness, RAND Policy Forum, January 26, 2011.

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