Last week, a community of which I am a part (the Western Mass Recovery Learning Community) was invited to take part in an “anti stigma” event at a local community college in honor of (I think) some sort of awareness month, week or day.
For what it’s worth, I tried to figure out which awareness month, week or day it was (or was close to) through an on-line search because I couldn’t quite recall what I’d been told. What I found was sort of staggering. How is anyone supposed to keep track (and why exactly would they want to)? Apparently, according to Mental Health America, the White House, Wikipedia and a host of others, May is ‘Mental Health Awareness’ month. However, the National Alliance for Mental Illness (NAMI) counters that with ‘Mental ILLNESS Awareness’ week that reportedly falls in October. Meanwhile, according to some miscellaneous Facebook page, ‘Mental Health Awareness ’ day lands on April 16 (from 10am to 4pm, to be exact). Moving along, the Massachusetts chapter of NAMI notes that ‘National Eating Disorder Awareness’ week runs from the very end of February to March 1, and ‘National Brain Awareness’ week picks up the baton on March 10 (passing it along to ‘World Bipolar Day’ on March 30). Other dates of note? Apparently, ‘Self Injury Awareness,’ day is on March 1, and the Disability World site cites an absolutely staggering list of dates to remember here, including National Sauce Month (!?). But I digress. Suffice to say, my head is now spinning and I could never really quite figure out what the event I was specifically at was all in honor of…
Anyway, what’s far more important are the implications of what actually occurred at the event itself. A panel of six individuals (a mix of teachers and students) sat at a table on a stage in the school’s theater, and were individually invited up by a moderator to the podium to tell a bit of their stories. In truth, some of them were quite good speakers and one young woman offered a spoken word piece on body image and personal power that was pretty great. However, there was not much diversity in terms of the message: These experiences (‘mental health issues’ they generally called them) are lifelong illnesses with genetic components. Great.
The panel presentation was followed up by a question and answer period. Ah, but it wasn’t your standard, average ‘talk out loud’ question and answer period. In case people were too afraid or too uncomfortable to make their comments or ask their questions directly about oh-so-scary ‘mental health issues’ (the stigma of which we were supposed to be ‘busting’), we were encouraged to write our thoughts and inquiries out on little slips of paper that the moderator would then read on our behalf.
(Okay. Confession moment: I spent the better part of the first third of the event hurriedly scrawling out questions on several of those little slips of paper, since it appeared I might not be permitted to speak up myself . . . which, for the record, I would have vastly preferred both for the sake of getting my ideas across and due to my truly awful handwriting.)
So, they started reading those questions. And the words on one of those anonymous pieces of paper read something like: “Isn’t the language of ‘stigma’ just serving to sustain ‘stigma’? Isn’t it really about discrimination and oppression and if so, why don’t we call it that? We don’t talk about the ‘stigma’ of being black.” (Okay, that one just might have been mine.) The panel looked a little uncertain, but started jumping in with comments about how ‘stigma’ is appropriate to ‘mental health issues’ because it gets internalized unlike oppression around race which all comes from the outside and doesn’t get internalized (!?!?). (In fairness, the woman who spoke about internalized stigma was very well-intended and honest about being early on in her own process of figuring this all out and another woman on the panel did speak up and say that she preferred not to use the term ‘stigma’ because it kept us in a box.)
Then they came to another one of my questions. I could tell because of the slightly scrunched, “trying to decipher this handwriting” look on the moderator’s face. It went something like, “If we’re trying to fight ‘stigma,’ and the psychiatric labels we put on people have been demonstrated to increase that ‘stigma,’ then wouldn’t we do best to turn our efforts to demedicalizing human experience?” In a fascinating turn, they all stopped – moderator included – and said “Yes!” Fabulous. Maybe we’re getting somewhere?
And then the magic happened. Shortly thereafter, the moderator (I believe she holds a clinical role on the campus) ended the Q&A and announced she had an interactive game for us all to play. (Yippee! Everyone loves a good game, right?) The game was called, “I love.” (Uh oh. If I couldn’t have already guessed, I now knew this was headed somewhere I was not going to like.) In this game, you see, the rules are simple: Just begin every sentence with “I love,” and end it with “someone with [insert psychiatric label].” “I love someone with attachment disorder,” role modeled the moderator who then rattled off at least five more examples of who she ‘loves,’ before passing it along to the panel members. “I love someone with bipolar,” they said. Anxiety. Borderline. Paranoid Schizophrenia with psychotic features. (I began to twitch.) Then the moderator so generously threw it out to the audience. “Just yell it out!” she instructed them, and so they did. “I love someone with PTSD!” “Depression!” (Sigh.)
What are we doing? How could this ‘game’ have come so close on the heels of an entire panel’s enthusiastic agreement that we should begin to demedicalize human experience? Was I the only one who got the not-so-funny joke that was playing out before my very eyes? Fortunately, I was with someone else from my community and – given our silence had now been broken – he felt empowered to share with the audience that he was having trouble with the exercise as all he was really hearing was, “I love stigma!” I also then spoke up and shared that, “I love” people who find ‘borderline’ to be one of the most offensive diagnoses out there (myself included), and “I love” people who’ve been given lots of psychiatric labels, hospitalized against their will and then thrown that whole perspective out the window to their own substantial betterment.
At least ours were some of the last comments that the students in attendance heard. However, it left me much more up-close-and-personal with some of the following questions: What are we offering to some of our youngest minds? The very ones we should most be supporting to grow into critical thinkers as they learn how to enter the adult world and teach and share with others? Are any of us really doing enough to get the ideas so prevalent on this website into our schools? At what age do people even begin to find out that there’s another way to see things and understand human experience? And what are the implications of allowing young people to get so far along in life before they know they even have permission to consider another way of thinking and being?
Fortunately, part of our invite to this event had included offering a table of information. Although I never could have anticipated the aforementioned ‘game,’ I had guessed that the skew might be in the direction of the medical model and so at our table we offered (among other materials) copies of the films, ‘Beyond the Medical Model’ and ‘The Virtues of Non-Compliance’ as well as copies of ‘The Harm Reduction Guide to Coming Off Psych Drugs.’ We also offered an opinion piece by Rich Shulman published in the Connecticut Mirror on March 4th and entitled, “Mental Illness: Another Point of View.”
The piece had fortuitously crossed my computer screen only about an hour before I was to leave for the college event. Its focus: an event called “An Honest Look at Mental Illness” to be hosted by The Forum on March 7th and that was (honestly) equally as skewed in the direction of ‘illness.’ Unfortunately, the audience reach was to be even broader.
Interestingly, the Forum, in their defense, posted Rich’s article on their Facebook page and said, “We at The Forum welcome all sides of an issue, especially one as complex as this, and encourage inquiries like this both on stage and in our lives.” In fact, I received a similar response at the college event: “Thank you for coming and sharing your divergent views. We welcome that!” Sure, better to get other perspectives in from the audience than not at all. However, it’s the ones on stage who will always be heard the loudest and afforded the most credibility. We can be certain that comments like mine (from the back of an auditorium) or Rich’s (in a newspaper that not all attendees will even ever see) hold much less power.
Unless we do something more than we are doing. Talking here among ourselves is lovely and reassuring. Hopefully, there are lots of lurkers we don’t even know are here who are being influenced to broaden their views and challenge the status quo. In fact, I’m counting on that. But what else can we do?
Some ideas in the short term:
- First, go read Rich’s article, share it with others and comment on it. (Positive comments help reduce the popularity and visibility of the negative ones!)
- Then, go like the post referencing his article on the Forum Facebook page. (Let them know people are paying attention!)
- Next, post your own comment below his article on that Facebook page, asking the Forum how they will put their words to action and correct the imbalance of their most recent event.
And in the longer term:
- Work with your local community to put on more events that challenge the conventional ways (Here’s an example of of events from the Western Mass RLC!)
- Build a mailing list that includes as many teachers at your local schools as possible and share relevant articles and events
- Reach out to some of those teachers and:
- See if they are willing to distribute event flyers to their students
- Better yet, convince them to give extra credit to students for attending some of those events (I know more than one professor who has done this!)
- See if they will have people in to talk to their class about their own experiences or work from a different perspective
- Gift a copy of ‘Beyond the Medical Model’ or ‘The Virtues of Non-Compliance’ and see if you can get them to use it in their curriculum (I’m pleased to say that some teachers already have! And here’s a few other film suggestions: Healing Homes, Take These Broken Wings, Crooked Beauty, Open Dialogue, There is a Fault in Reality, Between the Lines, Coming Off Psych Drugs, Generation RX, Little Brother Big Pharma, Voices Matter, Titicut Follies…)
- Contact your local colleges and towns to find out about upcoming health, community and volunteer fairs and set up a table (even if you’re not a part of a fully developed organization or community, gather a few volunteers, give yourself a name and show up with some info to challenge and balance what else is there!)
- Keep an eye out for opportunities to write letters to the editors of local papers or to offer comments of support when you see letters and Op-ed pieces you like (even just sharing or liking those pieces on Facebook or Twitter has a real impact!)
What are your ideas?
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.