A Report on Community Outreach: Lay Opinions on Emotional Distress and Diagnosis
For the past several years, the East Side Institute for Group and Short Term Psychotherapy (ESI) and the Social Therapy Group (STG) have conducted surveys on mental health topics on the streets of New York City. These surveys are among the community-based and community-building activities of both organizations—one a non-profit education, research and training center; the other an affiliated group-oriented therapy center—that develop and promote cultural and community-building approaches to human development. By community-building we are referring to the social-emotional-intellectual benefits of diverse groupings of people creating community.
Both organizations host dozens of public forums, seminars and workshops open to all at their offices and at community organizations throughout NYC. This report focuses on street surveys conducted in 2013 and 2014 and a 2014 follow up public conversation. Taken together as a pilot study, they suggest directions for a carefully designed research/community engagement project undertaken by a wider grouping and on a larger scale.
Why We Did the Surveys
In addition to our long-standing concerns with diagnosis and the heightened activism surrounding the DSM-5, the ESI and STG had local concerns that prompted our decision to speak to NYC residents.
In New York State, legislation to require the licensing of professionals who practice psychotherapy or counseling went into effect during 2003-2005. What soon followed was legislation restricting where those eligible for licensing could accumulate supervised practice hours. The result has been a narrowing of psychotherapeutic and counseling approaches and a limiting of the kinds of institutions that practitioners can be exposed to during their training and early years of practice. This, in turn, has reduced the treatment options—as well as understandings of emotional distress—available to the public.
Since their beginnings nearly 40 years ago, the ESI and STG have been proponents and practitioners of non-medical model understandings and practices. Hundreds of social workers, psychologists and others have done formal training at the ESI over the decades. Some have opened social therapy practices in their states or countries; others have incorporated aspects of the social therapeutic approach into their existing practice and/or institution. Currently, fourteen therapists are in ongoing weekly supervision, with others are in short term and year-long training programs. Similarly, over the decades thousands of children, adults and families have come to therapy at the STG (in Manhattan and Brooklyn), which currently maintains a client base of 175-200 people. There are affiliated centers in Boston and Atlanta.
Also, since the beginning, the ESI and STG have been involved in community organizing—finding out what people think, educating them on developments (the “good” and the “bad”) 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.
The New York State legislation referred to above heightened for us the need to speak to people. The professionals who were readily available to help those seeking help in clinics, schools and community centers were becoming more restricted in what they could offer. Fresh out of school new practitioners weren’t even aware of alternatives. (see Note 1.) We wanted to learn from ordinary people how they were being impacted upon by the pervasiveness of the biologically-based diagnostic model—broadly speaking, as with the media and ad campaigns of the pharmaceutical companies, the attempt to reduce stigma with a “mental problems are an illness” public service campaign—and on the local level in their visits to their physicians and local clinics, and meetings with the teachers, counselors and social workers at their neighborhood schools. What did they think they needed? What would be effective ways to involve people in learning about alternatives and, for those who wanted more choices, in shaping new approaches in collaboration with us and other like-minded professionals?
We conducted three versions of a survey on diagnosis and mental health in 2012-2014. In 2012 the focus was on children. Data from the 2012 survey were not analyzed and thus will not be discussed here. In 2013-14, the focus was on whether and when diagnosis was necessary.
The surveys were conducted at two annual NYC street fairs attended by millions of people: Harlem Week and Atlantic Antic. Harlem Week is a celebration of Harlem’s rich cultural, economic and political history attended by over two million people from throughout the New York metropolitan area as well as tourists. Atlantic Antic, a one-day affair, showcases the cultural diversity of Brooklyn. Spanning four neighborhoods, it is the largest street fair in NYC, frequented by many thousands. These fairs were chosen as locations with a strong and steady flow of traffic of people browsing and eager to see what the next booth would bring. In addition, we were seeking an ethnically diverse crowd with substantial African American and working class representation.
The surveys were conducted on Sunday afternoons. At each fair, the ESI and STG shared a booth that displayed literature, books and fliers. The booth was staffed by 5-6 people who fanned out and stopped walkers by and asked them to talk. After introducing themselves and the purpose of the survey, they asked a series of open-ended questions and wrote down what people said on a separate sheet for each person. They then invited people to give their names and contact information for follow up. Conversations lasted from five to over ten minutes each. In all, 143 people participated in the survey in 2013 and 149 in 2014. They ranged in age from 15-80, with most being 35-55. Roughly half were African Americans.
2013 Survey (n = 143)
- What do you think about the use of psychiatric diagnosis for kids? How do you think this is affecting them?
- A very high numbers of young people of color have been diagnosed and medicated, what do you think about that?
- Some people say that when people get a psychiatric diagnosis it can be helpful to them. What do you think?
- Some people say that when people get a psychiatric diagnosis it can be harmful to them. What do you think?
- How do you think being labeled impacts a person?
- For the past 30 years the Social Therapy Group has been practicing and training counselors in an approach that helps people without labeling them. (We do that by helping people grow their emotions). What do you think about that?
The results of this survey were that the majority of people (60%) felt that diagnosis could be valuable, especially in providing relief to know “what’s wrong.” However, among that grouping, 90% of them had reservations (only sometimes, danger of misdiagnosis, racism of diagnosis, stigma, leads to over-medication, etc.). Another 10% were completely against diagnosis under any circumstance, some sharing their experiences pertaining to children.
Medication makes you act out. My grandson was hyperactive, not ADHD and they wanted to put him on Ritalin – I told them no. Drugs at an early age can lead to hard core drugs later in life.
I worked with kids who had wrong diagnosis, and this is prevalent.
Kids get told in 1st grade they’re crazy—then it becomes a self-fulfilling prophecy.
2014 Survey (n = 149)
For the next year’s survey we tried to go a little deeper and see if we could help people explore the apparent conflict around diagnosis, i.e., its value and its dangers. We also wanted to learn what they thought about the necessity and mandate of diagnosis.
- 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?
(IF THEY SAY YES, ASK THE NEXT 2 QUESTIONS):
- Do we need to relate to them as having brain disorders? Or chemical imbalances?
- Right now, in most settings, if you want to get help with ANY kind of emotional pain from a mental health professional, they are required to give you a diagnosis. Do you agree with that?
- Are there other ways to support people emotionally? What do you think could help them?
- Like me, you probably know people in your family, church, or at work who have serious emotional problems, who may have been diagnosed with major depression, bipolar or schizophrenia. Obviously people deserve and need top quality mental health care including access to medication. Do you think that even in these situations a diagnosis can limit the person, label them, and stigmatize them? If so, how?
- From our past surveys we have found that people are conflicted about diagnosis and labels. They find it relieving to get a diagnosis and at the same time feel like the diagnosis can stigmatize or label them. Why do you think that so many of us are conflicted about this, feel it can be both helpful and harmful?
- As I mentioned before, diagnosis is now a requirement for accessing mental health care in many settings. And mental health professionals the world over have formed a Global Summit to challenge this. To be effective, we think the community needs to play a more active role in the conversation. We have their ear. What would you like to say to them?
- Diagnosis Needed: 60% of respondents said no, people did not need a diagnosis to get help with their emotional pain. The majority of the 40% who said diagnosis was needed told us that that was the only way to get to talk to someone.
Only those who said yes, diagnosis was needed (40%), were asked the next two questions.
1a. Biological Basis: 89% of those who said diagnosis was needed said we shouldn’t consider such people as having a brain disorder or chemical imbalance.
1b. Diagnosis Required: 75% of those who said diagnosis was needed did not agree that it should be required.
- Other Ways to Support (alternative types of treatment):
Everyone offered an alternative, with most people suggesting more than one. The most frequent responses involved talking to people—therapy, counseling, group therapy being the most common (including, “A center they can go to without getting diagnosed”), followed by family, friends, self-help and support groups.
A wide variety of social activities and life style changes were recommended—volunteering, hobbies, music, dance, writing, meditation, exercise, yoga, diet, prayer and creating community (“Have events that bring people out, like this fair”).
- & 4. Concerns about Diagnosis: 90% (including those who thought it was needed) expressed concerns about the stigma of diagnosis, the dangers of misdiagnosis, and/or the over-medication that too often accompanies a diagnosis.
Once you have that label it doesn’t stay at the clinic. You carry it with you for a long time.
People start calling you crazy. It can be a shame for the family.
I had to fight to get counseling for my kid. They just wanted to give him drugs.
Getting a diagnosis limits life experience, you’re treated differently, you feel like an outcast.
It’s helpful to the clinic but not in everyday life.
Its good to know what’s wrong, but it might make them feel worse about themselves and put them in a box.
It pigeon-holes people and the diagnosis becomes all that I am.
It stagnates them. It keeps them on one path with only one destination.
They think something’s wrong with them.
There is too much use of medication. It is a quick fix to avoid a real understanding.
Against it – children are still growing. Against medication.
The Upside of Diagnosis: As already mentioned (question 1), the obvious benefit of diagnosis according to respondents is that it is a pathway to getting help (“You need a diagnosis to get to talk to someone”). The other benefit frequently mentioned was relief to know what’s wrong (“If we don’t know what it is, we’re afraid of it”).
- Tell the Professionals: When we asked what they might want to tell the Global Summit on Diagnostic Alternatives and other professionals, they gave clear directives:
Community life is important.
Don’t assume it’s an individual problem.
Therapy should be free or affordable regardless of a diagnosis paid by insurance.
Stop giving medication to children.
and statements of support and encouragement:
Don’t be scared.
It’s a broken system. It’s not your fault.
Limitations of the Surveys
The surveys were initiated as a community organizing effort. They were conducted by staff, students and clients of the ESI and STG, whose ease at talking to strangers and filling out forms varied. The questions were modified from year to year and from location to location. The results provide rich data suggesting that a systematic study with a revised survey conducted on a larger scale would be of great value.
Follow Up Conversation
Three months later in December 2014, we held a public event, “Do Diagnostic Labels Determine Who We Are?” at UX, a free school for continuous development that is a project of the All Stars Project. Located on 42 St. UX draws people, mostly poor and working class adults from neighborhoods in the five boroughs, to Manhattan’s Times Square area. Forty people attended the event; among them were a handful we had met doing the surveys.
The forum was led by Christine LaCerva, director of the STG and of clinical training for the ESI. She spoke of her personal history, the mission of both the ESI and STG, and the landscape of alternative approaches to diagnosis we are part of (including the Global Summit for Diagnostic Alternatives). She then opened for conversation.
This two-hour conversation gave more insight into how ordinary people—in this case mostly working class adults—experience diagnosis and how they felt about speaking with each other about this and hearing of alternative ways to understand and deal with emotional pain. In addition to a sharing of personal experiences, the conversation included insights about diagnoses and how to relate to them, critiques of the mental health and educational systems and pharmaceutical companies.
When I finally got labeled ‘depressed,’ I was relieved. It helped me deal with all the people who were saying, Get over it already!
I’m a high achiever. Getting a diagnosis helped me see that I wasn’t just slacking off but that something was seriously wrong with me. I was diagnosed bipolar and depressed. I’ve learned to embrace them all and not let them overpower me. I use it to fuel my ambition. Not making it bigger than myself. And I want to liberate other people too to organize the diagnosis on terms that are helpful to you.
I am the mother of two autistic teenage boys, one of them is diagnosed bipolar. This has been very hard. I work full time but also try to give them what they need. I’m afraid that they won’t grow up. That they won’t have any place to go. I’m exhausted.
They are putting too many kids on meds. They need to be aware of all the alternative ways of working with kids.
Mental health workers need a multitude of training. If you are in the business of children, you need to have access to all of the alternatives.
I’m a social worker and I think you can create your own boundaries. I don’t let myself get over-determined by what I’m supposed to do.
It’s important to be where the patient is. Some social workers go into people’s home and tell people what their problem is. They should not do that.
It’s important to see how tied in diagnosing is to Big Pharma.
We learned more from participants’ responses to a written “exit poll” consisting of three questions. Thirty of the forty participants filled them out.
- Everyone answered yes to “This conversation on diagnosis and labeling made me think about some things in new ways.”
The next two questions gave people the opportunity to tell us what was new for them in the conversation.
- “What surprised you during the conversation?”
Developing the idea of diagnosis and how to use it.
That so many people have similar problems concerning mental health issues.
Different positive ways to communicate.
The pain mental health causes to families.
That we have to face our fears collectively.
The many people who are going through this with young adults.
How navigating feelings without diagnoses can be done. That alternative therapy methods are taking place.
The diversity of opinions and situations that were discussed. Very valuable information all pertaining to the growth process.
That the person who may be sitting next to you has a diagnosis that is not apparent to you or anyone else in the room. It’s a label that is diagnostic.
People sharing and how the fear of raising children opened up.
- “What’s something you might share with a friend?” gave a sense of what people found worthwhile about the conversation as a whole, and what ideas and concepts they wanted to share.
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.
One thing I might share with a friend because she suffers from bipolar disorder is the idea of taking a disorder and making something good with it.
I might share my own way of thinking along with my own personal “diagnosis” of myself and what I’ve understood from it.
I will be sharing everything with a friend especially the importance of labeling and how powerful that can be or damaging.
To encourage people more to speak more public about the topic of mental illness and alternatives to medication and treatment.
The political consequences of diagnosis.
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.
Stop worrying about the diagnosis and focus on what you can create with it.
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.
These responses suggest that participants were grateful for the opportunity to have this conversation, and were aware that they had participated in creating some new ways of talking together about emotional problems and understanding and relating to diagnosis. There was a desire to have more events like this one. In addition, thirteen of the forty participants asked to volunteer as future survey takers or as builders of UX.
To our knowledge, these surveys are unique. Our literature search, while not exhaustive, has turned up surprisingly few opinion polls on anything to do with mental health/mental illness at all—and none that do not use conventional illness labels like schizophrenia and depression (putting the horse in the cart, so to speak) and/or ask people to choose between reductionistic causes. This is the case whether the purpose of the study is to discover correlations between lay people’s beliefs about mental illness and the treatment options they favor, or to examine whether a disease view of mental disorder reduces stigma (apparently, it does not).
Disorder and illness are presumed. The field of vision is already defined. The options are chosen for us, not unlike US polls on electoral politics that offer Democrat or Republican as the only options—despite the fact that 42% of the American electorate identifies as independents, eschewing the political parties.
For example, Kuppin and Carpiano (1996) reported on a study of lay beliefs about the causes of disorders in which respondents were to choose between biological and upbringing explanations of schizophrenia and substance abuse in a hypothetical case—the assumptions being that 1) schizophrenia and substance abuse are universally agreed upon conditions, and 2) they have one or the other identifiable cause. Similarly, Riedel-Heller, Matschinger and Angermeyer (2005) used a hypothetical scenario in interviewing 5000 Germans to learn their preferences in treatment for schizophrenia and depression. While the options in this study cast a wider net, they were nevertheless limited, in this case to the individualized treatments of ailments, including psychotherapy, natural remedies, acupuncture, relaxation, psychotropic drugs, meditation/yoga, and ECT. [See note 2.]
In contrast, recall that the respondents to our survey also offered hobbies, volunteering, creating community and other social activities. We neither limited them by a medical and illness narrative (we did not ask them about alternative treatments; rather we asked about ways to support and help), or by presenting them with our list of options.
To the extent that the existing research uses medicalized language (such as mental disorder, addiction, substance abuse, people, living with mental illness) it preempts any consideration by the public of personhood, subjectivity, emotionality, social relations and social activities, and the role of the mental health institutional complex. How lay people think about these issues is critically important to how they currently relate to mental health and how they might participate in transforming it. The surveys and forum reported here certainly point in a direction worth pursuing.
Note.1. For data and analysis within clinical psychology on a national level, see Heatherington, Messer, Angus, Strauman, Friedlander & Kolden (2012), The narrowing of theoretical orientations in clinical psychology doctoral training. Clinical Psychology: Science and Practice, 19(4), 364-365.
Note 2. Kuppin, S. and Carpiano, R.M. (2006). Public conceptions of serious mental illness and substance abuse, Their causes and treatments: Findings from the 1996 General Social Survey. American Journal of Public Health, 96(10), 1766–1771.
Riedel-Heller, S. G, Matschinger, H. and Angermeyer, M.C. (2005). Mental disorders–who and what might help? Help-seeking and treatment preferences of the lay public. Social Psychiatry and Psychiatric Epidemiology, 40(2), 167-74.
Levi, S. and Haslam, M. (2006). Lay explanations of mental disorder: A test of the folk psychiatry model. Basic and Applied Social Psychology, 27(2), 117-125.
Mehta, S. and Farina, A. (1997). Is being ‘sick’ really better? Effect of the disease view of mental disorder on stigma. Journal of Social and Clinical Psychology, 16(4), 405-419.
O’Conner, C. and Joffe, H. (2013). How has neuroscience affected lay understandings of personhood? A review of the evidence. Public Understanding of Science, 22(3), 254-268.