“Once you have that label it doesn’t stay at the clinic. You carry it with you for a long time.”
“We need to encourage people to speak more public [sic] about the topic of mental illness and alternatives to medication and treatment.”
“When I finally got labeled ‘depressed,’ I was relieved. It helped me deal with all the people who were saying, ‘Get over it already!’”
“It’s important to see how tied in diagnosing is to Big Pharma.”
These are some of the things people say when given the opportunity to talk about their experiences with and opinions about mental health and diagnosis. My colleagues at the East Side Institute for Group and Short Term Psychotherapy and the Social Therapy Group in New York City give people these opportunities. We design activities in which we can have conversations with people—finding out how and what they think; educating them on developments in the fields of psychology, social work, education, medicine and health care; sharing with them innovations and alternatives; and inviting them to participate in creating new ways of relating to “mental health,” “mental illness,” emotionality, and the broader issues of human development and learning.
We go on the NYC streets and ask people to talk to us. For the past few summers, we’ve conducted surveys at two street fairs attended by millions of people: Harlem Week and Atlantic Antic. This summer’s (2014) survey focused on diagnosis. In all, our team of staff and volunteers had conversations with and complete surveys from 149 people. They ranged in age from 15-80, with most being 35-55. Roughly half were African Americans.
Nearly everyone we spoke with has had personal experience with the mental health institution and most are frustrated in one way or another. They’re very concerned about kids being prescribed drugs: “I had to fight to get counseling for my kid. They just wanted to give him drugs” is a common theme. They worry about the stigma that diagnosis can bring: “People start calling you crazy. It can be a shame for the family” and the way it comes to define you: “It pigeon-holes people and the diagnosis becomes all that I am.”
Let’s take a look at some overall results. This was our first question:
We all know people who have gotten very depressed when they’ve lost a loved one, or children who cannot sit still in school, lots of folks who are angry and demoralized about not finding a job. Do you think any of these people need to get a diagnosis in order to get help with their emotional pain?
60 percent of respondents said no, people did not need a diagnosis to get help with their emotional pain. Of the 40 percent who said that diagnosis was needed, the majority told us that it was “the only way to get to talk to someone.” Some people mentioned the relief it gave them: “If we don’t know what it is, we’re afraid of it.”
People were also skeptical about attributing emotional distress to brain disorder or chemical imbalance, with 89 percent saying they didn’t believe it: “Everyone’s different. Things go on in people’s lives and they need to talk about them.”
We got many interesting ideas for what people could do when we asked them this question:
Are there other ways to support people emotionally? What do you think could help them?
Everyone offered an alternative, with most people suggesting more than one.
Talking to people was highest on the list, with therapy, counseling, and group therapy mentioned most often (“A center they can go to without getting diagnosed”), followed by family, friends, self-help, and support groups. People also suggested social activities and life style changes—volunteering, hobbies, music, dance, writing, meditation, exercise, yoga, diet, prayer, and creating community: “Have events that bring people out, like this fair.”
As significant as what people said was how grateful they were to be asked! They thanked us for having the conversation with them, being interested in what they had to say, and giving them a way to think about the issues.
We experienced the same enthusiasm and appreciation in a public forum we held a few months later, “Do Diagnostic Labels Determine Who We Are?” About 40 mostly working class adults participated in a conversation that was able to go deeper than the street surveys could, especially about what you could do with diagnosis. The conversation, as well as responses to a written exit poll, made it clear that being able to talk about diagnosis—where it came from, how people experience it both positively and negatively, and what else we might do with it—was exciting, challenging, and intimate.
You can see this from their responses to the exit polls. We asked them to tell us what surprised them about the conversation and what they might share with a friend. The main themes were: how they were now thinking about diagnosis, the importance of being social, and the possibility of growing with or beyond any label.
“Developing the idea of diagnosis and how to use it.”
“How navigating feelings without diagnoses can be done. That alternative therapy methods are taking place.”
“I would share that they are not who the diagnosis says they are, and how they are able to manage the diagnosis to make it work for them.”
“Stop worrying about the diagnosis and focus on what you can create with it.”
“That so many people have similar problems concerning mental health issues.”
“That we have to face our fears collectively.”
“The many people who are going through this with young adults.”
“The diversity of opinions and situations that were discussed. Very valuable information all pertaining to the growth process.”
“People sharing and how the fear of raising children opened up.”
“I will be sharing everything with a friend especially the importance of labeling and how powerful that can be or damaging.”
“The collective creativity concept of developing socially with diagnosis.”
“The importance of being social and developing as a social being with a community of people.”
“That there’s no such thing as being alone.”
“Growth is an ongoing process that needs to continuously be analyzed and spoken about in safe circles.”
By not using psychiatric, medicalized language in our street surveys and public forums, we were able to create opportunities for people to have new kinds of conversations with professionals and with each other. It was not only an effective learning environment for us and for the participants; their responses strongly suggest that it was, at the same time, a therapeutic experience for those we spoke with.
A full report on this work appears on the Global Summit on Diagnostic Alternatives entitled, “A Report on Community Outreach: Lay Opinions on Emotional Distress and Diagnosis.”
— Lois Holzman
Today’s guest contributor, Lois Holzman, is director of the East Side Institute for Group and Short Term Psychotherapy, a co-creator and practitioner of social therapeutics, and an activist scholar.