Democratizing Diagnosis By Mary Fridley

By Mary Fridley

During a recent conversation with a member of the Reimagining Dementia Coalition (which I lead), Jennifer (not her real name) shared her frustration with how people related to her after recently being diagnosed with early-onset dementia. At one point in the conversation, she  asked, “How is it that, even though I’d probably been living with dementia for a while, I was previously related to as a fully-formed human being, albeit one with some ‘eccentricities,’ while the day after my diagnosis, I became someone with nothing meaningful to offer to the world?” 

Unfortunately, hers is an all too common experience in a world in which far too many people are being labeled and diagnosed (sometimes literally) to death. However, the good news is that we don’t have to go along with the assumption that diagnosis represents the end of the story (i.e. we know what’s going on with us both emotionally and physically). Fortunately, there are a growing number of non-traditional approaches to emotional health and healing that relate to human beings with integrity and to mental health/illness as an issue of emotional and relational growth. 

I’ve had the privilege of training in one of those approaches, social therapeutics, which was developed by the East Side Institute (where I’m on faculty). The Institute’s co-founders, the late Fred Newman and Lois Holzman, have argued for the “democratization of diagnosis” in response to what they call, “the authoritarianism of diagnosis.” What does this mean? It might mean involving everyone – professionals and clients alike – together to create the activity of “having dementia” or depression, or anxiety, or a “special needs” child. As someone who is vulnerable to depression, it has been freeing to be able to ask myself, “How do I want “to do” depression today?” As odd as it may sound, there are a multitude of ways to be in the world – we really are not the sum of our labels!

And it might mean asking regular old people how we feel about being labeled with a diagnosis, as the Institute did through surveys conducted by Institute staff and volunteers at street fairs in New York City over the last decade. We invited hundreds of New Yorkers, over half of whom were African American, and virtually hundreds more around the world, to share their experiences with mental health and diagnosis, and to share the alternative ways they are taking care of their emotional well-being. 

The result of this effort was captured by Lois Holzman and attorney Lisa Genn in a report, “Diagnosis: 1000 People Speak Out,” which appeared in the Journal of Humanistic Psychology in 2018. As they write, “[The Institute] designs 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.”

I will admit that when our survey teams first took to the streets, I had a hard time imagining that people would actually want to stop and speak with us. Boy, was I wrong! The conversations were lively and thoughtful – and an important reminder that just because ordinary people are routinely ignored by those who “know what’s best for us,” it doesn’t mean we don’t have a lot of very valuable things to say and solutions to offer.

The first question I and other volunteers asked was, “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?” 

Over 60% of those surveyed, including many living in communities of color where children are regularly over-diagnosed and over-medicated, said NO. 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.” 

In other words, the people we spoke with recognize that diagnosis “…is at best a necessary evil, required under the current system of health insurers to have the possibility of getting some help. At worst, it is stigmatizing, limiting of possibilities, isolating, and potentially physically harmful.” If you’d like to read the entire article, click here.

I have a feeling many agebuzz readers – including those impacted by dementia – would agree with this conclusion, and I’d love to hear your experiences with diagnosis and mental health – and what you’ve found helpful and positive in your life – so please reach me at [email protected].

Mary Fridley is on the faculty at the East Side Institute in NYC, co-creator and leader of The Joy of Dementia (You Gotta Be Kidding!), and coordinator of Reimagining Dementia: A Creative Coalition for Justice. An accomplished teacher and workshop leader, Mary practiced social therapy for 12 years and uses the social therapeutic approach as a teacher and workshop leader. She is the author or co-author of several articles and chapters on the Joy of Dementia, including a chapter that appears in The Applied Improvisation Mindset published in August 2021. Additionally, Mary is a guest blogger for agebuzz and a playwright and theater director. She makes her living as a non-profit fundraising consultant. She can be contacted at [email protected].