“People with lived experience of mental health concerns can offer significant value, and provide equity to any group or organization that communicates with the public.”
Recently, I was invited to co-present at the 2020 Canadian Mental Health Association’s National Conference, and, along with a member of the Mental Health Commission of Canada, spoke about my experience as a participant in their Community-Based Research (CBR) Forum, and as a member of the Review Committee for the project, which awarded 14 grants and $1.4 million in funding to research in Cannabis and Mental Health.
This is a big deal, as just a few years ago, I never would have imagined that I would have the confidence or mental health to be able to do something like this. But I did, and it gave me strength.
This piece is also available in audio.
I’m Leanne, and I’ve experienced significant stigma because of my mental health issues, many of which have been work-related.
My Learning Disability – ADHD – allows me to see things in ways that others can’t, and that causes discomfort to most, and usually results in incorrect assumptions of narcissism, arrogance, ignorance, rudeness or “crazy”.
In working with MHCC, I found an opportunity to be myself, without fear of misunderstanding.
They wanted me to bring my experience of living with mental health concerns, and as a cannabis user, to help shape research for the future.
All that stuff that I went through in my life up until that point, was actually worth something – and people were, not only wanting to listen, but to compensate me for it, too!
Integrating Appropriate Representations of People with Mental Health Concerns into (Society/Research/Information),
Delivered on October 20, 2020.
We must ensure that our representations are appropriate,
so as not to appropriate the experience from those who live them.
People with lived experience of mental health concerns, can offer significant value, and provide equity to any group or organization that communicates with the public.
Stigma surrounding the capability (vs. the fragility), of the individual is often informed by media representations, in pictures, video games, music, tv programs and movies, as well as biased reporting, usually involving a crime, and it’s no wonder that the exclusionary stigma persists.
Right now, I’m in a severe depression. Can you tell?
I have a mental illness, too, that causes self-image issues, difficulty managing emotions and behavior, and a pattern of unstable relationships.
Then there’s the ADHD Learning Disability, but here are some of my accomplishments:
Graduated, with Honours, from Queen’s University,
Graduated, with Honours, from Humber College,
Continue to run my own business, a PR firm, now entering its 17th year,
I [home] educate my child, who comprehends well-above grade-level, and helped me to create this presentation
I’m presenting in front of academics, thought-leaders and experts at this conference…
…but I can’t hold a traditional job because of my mental health issues, and the lack of understanding and knowledge of my afflictions, as well as how I manage them. It doesn’t make me a “good fit” for the typical work environment (hierarchy, procedure, compliance, etc.), and I know that I’m not the only one.
This is why Lived-Experience perspectives are crucial to informing all aspects of community relations and human rights, whether it pertains to the workforce or children’s programming, customer service or news reporting, prioritizing the emotional experiences, in addition to statistical and clinical data, is required to provide the most equitable assistance and care.
To ensure that individuals living with mental health concerns are fairly represented, mass media (ad agencies, marketing/PR firms, record labels, film studios, etc.) should be required to have Mental Health consultants on staff. Both, health professionals and Lived Experience individuals would comprise the panel that would [only] review works involving representation of mental health concerns/mental illness to ensure appropriate and responsible portrayals.
The song “Sweet But Psycho” sung by Ava Max and released through Atlantic Records, is an example of this.
Not only is the title incredibly triggering to me – as “Psycho” was my undeserved and stigmatizing nickname in high school, given to me by the ignorant jerks in my class – but also because of the polarizing nature of the title – “She’s a really nice girl, but she’s f’ing nuts, so…you know.”
Here are some lyrics:
The song (and video) goes on to sexualize the subject, with lyrics like, “When she’s mean, you know you love it ‘Cause she tastes so sweet, don’t sugarcoat it”, encouraging others to take a “wild ride” for their own curiosity. Most often, girls like us get tossed aside when the allure wears off and the reality of our mental condition sets in, and that’s incredibly damaging. Sadly, I speak on this from a 1st Voice perspective.
To me, the lyricist, the singer, and everyone at the record company who produced, marketed and distributed the song, are responsible for bringing this attitude, and its respective offensive video, to the ears and eyes of children and adults, and “educating them” that this terminology and stigmatization is acceptable.
After the release of this song, these hit the shelves, and they continue to sell them, labelled as “funny”.
If the people who approved the production came to my place during a mental illness episode, would they’d find me “cute” or “funny”?
So how do we represent fairly without overblown, politically-correct tokenism?
This is a common issue faced by diversity consultants who often encounter clients that want a “quick fix”, instead of exploring long-term solutions.
Putting a “face” forward that seemingly assuages everyone’s “obligation to inclusion”, does not mean that an organization earns the right to present themselves as “woke”.
That major global online retailer of handmade/vintage, continues to sell those “Cute but Psycho” shirts, despite three years of ongoing protest. If I, or probably many of you as mental healthcare professionals, were engaged in the decision to list these items, a resounding “NOPE” would be heard.
Taking it down and putting up a “We’re Committed to Diversity and Inclusion” banner isn’t a solution to anything other than the company’s bottom line. It’s a shady PR move that’s insulting and negligent and thrusts the company into the spotlight where there is no such thing as bad publicity.
Chik-Fil-A still stands.
Engaging those with Lived Experience is Marketing 101 – Focus Groups.
But how do you engage meaningfully without tokenizing?
With traditional focus groups, demographic information, like age, gender, marital status, are requested. Most of this information is general and people are open to identifying, however, when discussing more specific, personal identifiers such as sexual orientation, religion and disability (inclusive of mental health), being forthcoming isn’t easy for many, often due to stigma.
When I applied for the opportunity to be part of the MHCC project, I was publicly declaring my mental state and my use of cannabis, just like I’m doing now. I am a parent, and fears of acknowledging my substance use and mental illness, and having them turned on me to take my child from me, was a legitimate concern.
I was elated to find positive support during the public forum, when I spoke about my experiences – participants thanked me for being open, I made new connections with marvelous people, and it has led me to this place.
This is why it is crucial for organizations to include diversity consultants, specifically with Lived Experience of the particular objective.
Working with the MHCC, all of the applications to the RFP that came through were strongly encouraged to show that at least half of the Core Team members had Lived Experience with cannabis and mental health.
This ensured that representation is legitimate and informed and, that these wonderful projects will actually help those of us who need it by, not only providing valuable experience, but compensation for our unique knowledge, as well.
The more effective the representation, the more encouraging of inclusion, which leads to more people feeling comfortable enough to access services without fear of rejection or denial.
Lived Experience shines a light onto a mosaic of perspectives, and brings people forward, out of the shadows, to see what’s going on.
The theme of today’s conference aligns nicely with this – Mental Health for All, and also, Hope In an Age of Uncertainty. What do we believe? What can we believe?
Since the pandemic began, I’ve been thinking about, and seriously feeling, Uncertainty.
This situation has shown us that, despite so many “experts”, in various fields, touting themselves as prolific and aware, there is continual dissent amongst them. I believe that everyone is trying to do the right thing, but what is that? An unprecedented event like this one has no expert, so everyone is uncertain (and just trying to look like they aren’t).
I started ParentalMental.com this year, because I was, and continue to be, uncertain about my parenting, but even more about parenting during the pandemic.
Because I’d been educating at home for a few years, it was a smooth(er) transition into lockdown for us, but I listened to my friends talk about their fears and worries, saw the uncertainty on social media, and I realized that, again, I was not alone.
That gave me comfort.
Founded on the basis of sharing experiences and building what I call Relatable Solidarity, by allowing readers to observe and, hopefully conclude, “It’s not only me” demonstrated its necessity as children and parents were locked down together, 24/7.
Reading each other’s stories provides a direct form of Lived Experience/Knowledge Translation from the Personal/Emotional to paper, making it easier to communicate with a wider demographic of people who connect to the experience on an emotional level as opposed to statistical, i.e. I have these symptoms on the checklist.
I know that I cannot speak for many people, as all of our experiences are different, but I sincerely hope that, through my participation in the Mental Health Commission of Canada’s Cannabis and Mental Health project, I’ve spoken on behalf of some, and that it will help others to recognize the reality (not scripted representation) of mental health concerns, to easily find help, and to share their stories without fear, but with fervor.
Below is the letter that I wrote to the MHCC after my experience on a project as a Lived Experience participant.
As you’ll note, the confidence that it provided me was tremendous, and, through effective representation, can provide it to others, as well.
Featured image: Adrian Swancar on Unsplash