The Reliable Narrators
What is the value of lived experience? How should it be defined? And by whom?
Let’s say I live through an event, carry a burden, or I have a certain condition. Does that make me an expert in it? The obvious answer is no. One could fall on the sidewalk and break an arm, and that would not render them qualified expert in bone fractures. However, there are some experiences so lived and reflected on in insightful ways, they gain value to others for their acumen.
The Office of the Assistant Secretary for Planning and Evaluation defines lived experience as the “‘representation and understanding of an individual’s human experiences, choices, and options and how those factors influence one’s perception of knowledge’ based on one’s own life.” The dictionary definitions of Lived Experience range from “a high level of knowledge or skill”, to “expert skill or knowledge; expertness; know-how: business expertise.”
The value of the word “expertise” has shifted over the last two decades. Now, popular opinions mean more to many people than those of trained experts, thanks to our ability to connect socially with people anywhere, all the time. This elevates lived experience on a public level to align with expertise. We value the expertise of those who understand us. Certainly not everyone online is an expert in what they profess. In the notorious example of Jenny McCarthy posing as an expert on autism from her experience as a mother of an autistic child, the appeal to ignorance won out over professional expertise to anyone who followed her advice.
So when is lived experience enough to qualify as expertise? In the context of a professional setting, that answer is it depends on what experience is valued. Employers are (finally) placing value in diverse hiring, understanding how the lived experiences of people of color positively impact their institution. Organizations may value the lived experience of say, parenting, in making decisions related to workplace accommodations. Or they may value the lived experience of a certain population to gain interest for marketing purposes. More recently, the value of lived experience is being considered within the medical community, such as for those with long covid, as we seek to learn about more and better treatments.
In the context of a workplace, when an experience is one that comes with a stigma, conventional education and scholarly knowledge outweigh any lived experience, perhaps to the exclusion and even dismissal of those who have lived it. This is especially true in the case of stigmatized experiences, like houselessness, criminal records, disabilities or mental illness. Those experiences are devalued and relegated to silent burdens people carry. Those with criminal records have to navigate a minefield to apply for a job. Those with disabilities have to hope job applications themselves are ADA compatible even if the positions are in ADA compliant settings. Stigmatized experience is devalued in hiring processes despite companies’ claims of diverse practices. In truth, only some experiences are valued while others are discounted.
Yet the public trusts those who share their experiences and often even considers those informal messengers to be experts. So when should lived experience be counted, how should it count and by whom? Just because a lot of people listen to those with lived experience doesn’t mean those “experts” know what they’re talking about.
But it also doesn’t mean they don’t. Perhaps there is (or should be) some examination in professional communities as to why people often trust those with lived experience over those with professional experience. Maybe relating to an audience should be considered as a formal qualification for earning expertise.
The professional community would do well to acknowledge, evaluate, and even embrace stigmatized lived experiences in hiring processes. It would allow for a broader candidate pool who could better connect with an audience an organization wants to reach. And in an employment setting, appealing to more people is an asset, not something to stigmatize.
Organizations would also do well to analyze how they value expertise and acknowledge more flexibility in their definitions to balance the relationship between scholarly knowledge with the very human need for connection and validation. This is why lived experience matters in the public sphere. The both the messenger and the audience have the need to speak and be heard, making a shared lived experience cathartic to so many undercounted audiences. If organizations are able to broaden their definitions of expertise in their fields, those with stigmatized experiences could share valuable knowledge without being automatically defined as unreliable narrators, and companies could gain insight into the complexities of their workforce and expand the scope their audience.
In the Name of Mental Health
We are doing this all wrong. After decades of progress and research and countless public advocates sharing their personal stories, we are still getting this wrong. Mental Illness as a term is not an adequate umbrella. As we wend through our third pandemic year, all of us having lived through a traumatic experience, we are freer now with our talk about mental health. Let’s seize on this moment.
I am a working professional, and I have a mental illness. I am productive (sometimes to my detriment), social, intuitive, skilled, and live a full, satisfying life. My mental illness manageable, sometimes flares up, sometimes presents huge challenges, and has, at times in my life, impacted my career. But mostly, it does not. Some people are living with a mental illness. Some people are coping with a mental illness. Some people are struggling with a mental illness. Some people are suffering from a mental illness. None of us—let me say that again—none of us are our mental illnesses.
Do a Google search for “mental illness” and you will find definitions, health organizations, news articles documenting the current landscape of challenges for our youth, links to advocacy campaigns and so on. Now do the same for “mentally ill”. Besides the array of medical organizations and pseudo medical organizations offering definitions, you will find news articles about crime and homelessness. What is the difference here? A verb.
To have a mental illness is to have something separate from oneself. I have a cart full of groceries. But to be mentally ill is to become a mental illness. I have a mental illness. I am not a cart full of groceries. The dehumanizing nature about which we describe millions of people is a way of distancing ourselves from them, dismissing them, looking down on them, pitying them. It is alienating and cruel and does nothing to address a system we all know is flawed but don’t want to invest the energy into fixing either because if it doesn’t affect us immediately, it isn’t relevant; or because it might cause us to admit to a part of ourselves that relates to something stigmatized.
That’s the first thing we’re getting wrong. The second is the umbrella. Clinically, the term mental illness encompasses a wide array of disorders and conditions, ranging from anxiety disorders to personality disorders to psychosis. In the clinical diagnostic world, the umbrella is approached by lifting it to examine the person it shields. But when the term mental illness is applied in public settings—think morning news shows, local crime articles, casual conversations—all of the subheadings are squeezed under one umbrella. ADHD and schizophrenia are not alike, nor are social anxiety and psychosis. We need to do a better job at peering under the umbrella at the group of people still getting wet and hand out individual ones instead.
I have anorexia nervosa. I have had this mental illness since I was an adolescent. When it reared its head in the 90s, I was fortunate enough to have a supportive family and access to treatment. Unfortunately, it was still the 90s. The umbrellas were flimsier then.
When I was admitted to the University of Iowa’s inpatient hospital smack in the middle of my freshman year of college, clinical diagnostics were reliant on the DSM IV, the defining guidelines by which treatment practitioners align their practices. In this version, the first criteria for diagnosing anorexia nervosa is the “[r]efusal to maintain bodyweight at or above minimally normal weight for height/age”. Several years later, and long after my fifth hospitalization—a ten month stint in a residential hospital near an otherwise serene lake in Wisconsin—that version was updated to the current version, the DSM V. In this version, the first defining criteria for diagnosing anorexia nervosa is the “[r]estriction of energy intake relative to requirements, leading to a significant low body weight in the context of the age, sex, developmental trajectory, and physical health.”
The difference again is the language. The first ascribes motive to a mental health disorder, as though the lot of us were sitting there like toddlers in oversized shirts, pouting as some good nurse tried to gently open our mouths with a spoonful of applesauce. The updated version of the DSM removes the assumption of petulance, defiance, and childishness, and instead allows a clinician to ask: what’s going on here? Why might this person choose this behavior? In other words, it prompts the provider to lift the umbrella and see the human beneath.
During that first hospitalization, I was given Xeroxed copies of Cognitive Behavioral Therapy workbook exercises to fill out, instructed on how to eat a corn muffin properly (who knew there was one way?), and observed as I went to the bathroom to make sure I wasn’t getting rid of any food (we were not to be trusted, of course). My early treatment traumatized me in a way that I carry with me: forever blaming myself for the heartache my parents felt, the disruption to my education, the permanent effects of 25 years of osteoporosis. Even when I know it wasn’t a choice to have a mental illness, the effects of that message are additional challenges I have to address every day.
What I’m saying is that language matters. It matters in diagnostic terms and colloquial terms, in a doctor’s office and on a morning news show. It matters years later, long after someone has learned reflexively to call a safe person when the thoughts creep in. It matters to the people we love and live around right now, whether they tell us or not.
The third thing we’re getting wrong is the conflation of the terms mental health and mental illness. The National Association of Mental Illness (NAMI) makes the distinction to use the term mental health conditions, rather than mental illnesses. They have found a diplomatic and compassionate way to provide us an umbrella. There are mental health conditions that are situational, like depression after losing someone we love, and some that are caused by outside events, like PTSD. Still, those are different from biologically or genetically linked conditions, like OCD, bipolar disorder, or autism.
When we talk about managing mental health, it’s incumbent upon messengers in public health and the media to distinguish between mental health and mental illnesses when addressing broad audiences. It’s insulting to someone who has spent decades learning to manage major depression to suggest deep breathing or “looking at the bright side” might be a be a novel approach. Major depression is not
situational depression is not bipolar depression. Lumping these conditions together dehumanizes the individuals experiencing them and reduces their genuine challenges to the level of a paper cut. People with mental health conditions are not dumb. They might be in pain though, and that requires a more compassionate approach.
What I’m suggesting is this: when we collectively talk about mental health, let’s not use headlines that lump criminality and mental illness into sentence fragments meant to generate clicks. Let’s use people-first language wherever we can. Let’s find nuanced ways to talk about mental health conditions so that job applicants aren’t afraid to categorize themselves as something they’re not and risk a potential employer seeing them as inadequate. So that families can help identify someone’s unique situation sooner. So that people who have years of experience learning to manage their illness aren’t afraid to speak publicly and maybe, just maybe send the message to someone struggling that they aren’t alone.
And please, let’s find better ways to support people with different mental health conditions than chatbots, deep breathing apps, and gratitude journals. I cannot tell you the amount of times someone has offered me food in response to seeing my underweight frame. Thankfully, we have come a long way from those days of assuming mental illness could be reasoned away. But we can still do better as a society and especially as communicators to show off our deeper understanding. Choosing our verbs seems like a simple place to start.
Sources:
National Alliance on Mental Illness. (2022). Mental Health Conditions. https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions
National Institute of Health. (Accessed 2022, August 9). Statistics: Mental Illness. https://www.nimh.nih.gov/health/statistics
National Institute of Health. (2016, June). DSM-5 Changes. Implications for Child Serious Emotional Disturbance. SAMHSA. https://www.ncbi.nlm.nih.gov/books/NBK519712/table/ch3.t15/
National Institute of Health. (2013, March 18). Common Genetic Factors Found in Mental Disorders. NIH Research Matters.
https://www.nih.gov/news-events/nih-research-matters/common-genetic-factors-found-5-mental-disorders#:~:text=Scientists%20have%20long%20recognized%20that,disorder%2C%20major%20depression%20and%20schizophrenia.
Undeniable Narrator 