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Author Esmé Weijun Wang shares hope at Saks Institute Distinguished Fall Lecture

Wednesday, November 27, 2019

Writer of "The Collected Schizophrenias" discusses stigma and self-advocacy with Prof. Elyn Saks.

By Leslie Ridgeway

Author Esmé Weijun Wang discusses pushing back against stigma and cultivating resilience and self-advocacy.

The 10th annual USC Saks Institute for Mental Health Law, Policy and Ethics Distinguished Fall Lecture featured author Esmé Weijun Wang in conversation with Prof. Elyn Saks, institute founder and faculty director. The discussion, which included a Q&A session led by Prof. Saks, covered stigma, self-advocacy and the role of mental health professionals in helping their clients persevere.

"One of your biggest jobs, if you work with people who have mental health issues, is to help them keep going … keep dreaming,” said Wang, author of the essay collection “The Collected Schizophrenias” (2019, Graywolf Press), as well as the novel “The Border of Paradise.”

Wang related a chance encounter in her life to illustrate the role others play in helping people with mental illness persist in the face of considerable challenges. In 2013, having just been told by her psychiatrist that she had a medication-resistant form of schizoaffective disorder, Wang walked out of the doctor’s office in tears. A security guard noticed her distress and asked if she was all right.

“He asked me what happened and said, ‘Well, the doctors don’t know everything. Are you a writer?’” she told the packed audience. “I was surprised by that because, how could he know? I said yes. ‘Go home,’ he said, ‘and write about this.’ Six years later ‘The Collected Schizophrenias’ debuted at number three on the New York Times bestseller list. But I couldn’t have imagined that on that day … I am so grateful to everyone who has helped me to survive, including the security guard, who I gave a thank you card the next time I saw him and then never saw again.”

To Disclose or Not Disclose

Wang touched on the sensitive matter of disclosing a mental illness to a friend or colleague, noting how much easier it became to disclose after her book was published – “The information often comes before people meet me, instead of months into a friendship or years of them working with me,” she said. She characterized the decision to disclose as “a roll of the dice,” sometimes bringing sympathy and support, other times resulting in stigma.

“At a writer’s residency, I mentioned my inpatient hospitalization, and someone said, ‘It’s so amazing that you’re sick that way because you could never tell. You don’t have those tics and things,’” she said. “What was there to say in the face of this history of stigma?”

“One small thing we can do is not say ‘crazy’ when what we really mean is ‘ridiculous,’” she said.

Language is important for people with mental illness in building their skills to self-advocate, she noted. She uses person-first language - “person with schizophrenia” vs. “schizophrenic,” for example – but discovered that not everyone in the disability-rights community agrees with that approach.

“Some people identify very strongly with their diagnosis,” she said. “Self-advocacy is a great skill. You can tell people what kind of language you prefer. You can strengthen that self-advocacy muscle because it’s not often easy to speak up for ourselves … We’re told not to trust our own minds, that we are lesser people and our opinions don’t matter. It takes a lot of practice to battle the force of all those insistent inner and outer critics. It takes a lot of practice to build a habit of asking for what we need.”

Best Practices for Universities

During the discussion portion of the lecture, Prof. Saks noted that both she and Wang were asked to leave Yale University when their mental health challenges became serious before asking Wang what rules universities should have about students returning when their illness has become more manageable.

“I felt really angry at Yale and the more time that’s gone by the more I realize it’s a complicated situation,” Wang said. “There’s so much liability the university has to be concerned with. There needs to be a group of people smarter and wiser than me to come up with best practices. All these schools have different policies. I feel that if we get people together, at least there should be some consensus as to what might be best.”

               

Prof. Elyn Saks and Wang discussed the power of hope and optimism in coping with mental health challenges.

When asked by a member of the audience about helpful actions friends and colleagues can take to help people with mental illness when they’re suffering acutely, Wang said she and her friends developed a “care calendar” to help her manage when challenges arise.

“People signed up for shifts to come stay with me,” she said. “I found all kinds of things helpful. Something that helped was for my friends to treat me like they respected my wishes and wanted to know what I needed and wanted. They would ask how I was on a scale from one to 100. So much of it is knowing that people are there and willing to be there and don’t disappear all of a sudden.”

In response to a question about minimizing trauma for patients when they are admitted to a hospital, Wang agreed that more needs to be done to give patients choice and agency when they are hospitalized.

“I really wish that the psychiatric institutions could be redesigned and I think this would be the case for adults and for young people,” she said. “I wouldn’t be so terrified of being re-hospitalized all the time if I know the place I was going to wasn’t going to traumatize me so badly.”

“Keep Going, You’re Doing Great”

Wang emerged from the disorienting experience of coping with mental illness as an author, advocate, and dispenser of optimism on social media and in public appearances. She said she had a phrase often associated with her – “Keep going, you’re doing great” – placed on a coffee mug as daily inspiration. She wrapped up her talk with encouragement for both patients and caregivers.

 “I am often asked that if I could have one thing to say to a person after they receive a mental health diagnosis – remember that you are still you, you are still that person who can’t stand peas in their fried rice, has a freckle on their right hand, and sings like a bird. Hold onto that,” she said. “And for those of you who work within systems that often reinforce the strangeness of mental illness, rather than the humanity of those who live with mental illness, remember that, too, and help your clients and patients to remember that. Fight the stigma that exists toward mental illness. Cultivate resilience and self-advocacy. Carry hope and dreams. Eyes up, let’s go.”

 

  

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