How do you solve a problem that is mostly invisible, often deadly, and perpetuated unknowingly by millions of people every day? How do you make people pay attention to a problem that they think has nothing to do with them?
You joke about it.
Seriously.
Jokes travel faster than facts. They zip around the zeitgeist like enthusiastic bunny rabbits. And sometimes, just sometimes, folks, they’re packing more than just a punchline. As one of my favorite academic studies of the funny reminds us, “Comedy has the power to make hard truths easier to hear, to challenge a toxic status quo, and to help normalize groups and behaviors previously viewed as ‘other.’”
diaTribe is a US charity dedicated to the simple mission of making the lives of people with diabetes better. The challenge they brought to Dancing Fox (the creative agency that Tommy Crawford and I run) was raising awareness of how diabetes and people with diabetes are suffering from stigma and stigmatizing behavior to the point that it’s literally killing people.
As diaTribe notes on their dStigmatize website:
Research shows that stigma contributes to worse diabetes health outcomes. People with diabetes have said they feel embarrassment, anxiety, and low self-esteem as a result of experiencing stigma. In addition, the experience of being blamed or shamed for their diabetes can lead to feelings of isolation and a desire to hide their condition from others.
Stigma can also result in worse self-care and diabetes management. People with diabetes have reported injecting insulin only in restrooms or at home, making unhealthy food choices to avoid declining what is offered, and manipulating glucose logs to avoid criticism from significant others or health care providers.
The wonderful folks at diaTribe have teamed up with us on a bunch of projects, but none as fun as something called A Spoonful of Laughter (the name came out of Tommy’s somewhat Mary-Poppins-Bag-like brain). The idea was simple. Gather a bunch of standup comedians, some who had diabetes and some who did not, mix in a few artists, some who had diabetes and some who did not, and throw in a few activists, some who had diabetes and some who did not, and spend three days brainstorming the comic opportunities in situations where people with diabetes are made to feel ashamed, weird, other, and generally not normal. Turn the best of those opportunities into sketches and scripts and film them. Create an awareness campaign on the back of that content that snowballs into something that shifts the status quo.
We didn’t want to lecture people into changing their stigmatizing behavior. We wanted to “other” it by outing its absurdity in a playful way that people would want to share not because it was worthy, but because it was funny.
Workshops? Never! We call them Playshops!
Running any creative playshop / hack-a-thon is a high-wire act. But when your collaborator has arranged a truck full of camera and lighting equipment, an eight person crew, and an award-winning director ready to film whatever scripts you come up with immediately after your three days of brainstorming, well, that’s a wire of a different altitude. But wow did we have a creative riot.
We had a roomful of amazingly fun and imaginative people from musicians and improv actors to stand up artists and specialists in comedy as a driver of social change. Knowing we had three days to go from insight to idea to script felt like being shot out of a goofball cannon and having no idea where we were going to land. But that’s the core thrill of any form of improv: Let go, treat everything as a gift, and just skydive through the uncertainty.
Diabetes is a superpower
For the artists and activists and comedians in the room who didn’t have diabetes, the playshop uncovered some eye-opening stuff. To anyone like me who is #BadAtMath, people with diabetes seem like freaking supercomputers. They have to make an estimated 180 extra decisions a day about what they eat, when to exercise, when to adjust their blood sugar up or down, whether they can do this or that. Insulin levels are impacted by everything from the weather to mood to hormones to exercise to how much sleep you get. People with diabetes have to look at a menu and not just decide what they want, but calculate the carbs and calories and sugar content, compare it against their targets, and have an answer for Rachel the clueless waitress in seconds. Many can’t leave the house without some array of monitoring gear, insulin, hypodermics, their emergency candy, emergency juice, emergency snacks. And when they go low and have to adjust with a sugary treat, it’s often the people closest to them, who know they have diabetes, who ask the dreaded “Should you be eating that?” question. We heard hilarious stories of what it’s like to date as a diabetic, horror stories of having to face presumptions of drug addition for injecting insulin in public, heart-wrenching stories of being blamed for their condition and shamed by their own health care practitioners.
“The Sugars” is a sap that flows in my family tree
I had some skin in this game. Diabetes runs in my family. My mom had Latent Autoimmune Diabetes, a form of type 1 which afflicts adults when their pancreas gradually stops producing insulin. She’d known she was at risk since she was a child. She once told me a story about her favorite aunt Marion, who lost her twin sister to the disease at 21, a year before insulin was discovered. Marion once showed my mom how much birthday cake the doctor would allow her to eat — the tiniest of slices in my mom’s tiny hand.
Marion was a maverick for a woman born at the tail end of the 1800s: she never married, and worked all her life as a bookkeeper. When she retired, she became a research assistant to Elliott Joslin, a pioneer of diabetes research who founded the Josling Diabetes Center. It’s still operating today, more than a hundred years later, in Boston. The core of his research was ledgers of diet and exercise correlated to symptoms — bookkeeper territory, which Marion was a wiz at. She couldn’t save her twin sister, but she dedicated her final years to finding a cure for the disease which killed her.
My mom began taking insulin in her 30s, and hypodermics were a constant presence in our household. Testing herself back then required a finger prick to draw blood, and her emergency candy stash was (unjustly, we thought) off limits to me and my siblings. Her blood sugar levels sent her on roller coaster mood swings. We learned to spot the signs, but also quickly learned it could be risky to ask her if she needed to take a test or have some candy. Nobody wants to be defined by a disease, and a common cause of stigma is loved ones trying to help manage their condition, or blaming the disease for certain behaviors or disagreements.
Still, there’s a delicate dance.
There were times she went so low or so high she wasn’t really able to properly process what needed to be done, and she needed help. After my father passed, that happened when she fell into a diabetic coma alone at home on September 1, 1998, right after I’d called to tell her my first son had been born. I had heard a slight slur in her words, a telltale sign of a sugar low, and to my dying day I will regret not saying something, and not calling someone nearby to look in on her. As it turned out, my mother-in-law stopped by to celebrate the baby news, and found her on the kitchen floor. She woke up from her coma in hospital, her life saved, but she’d never see again.
Not a very funny story, right? It’s always a struggle, when dealing with a serious topic like diabetes, to find the places where laughter can be a spotlight, a mirror, and an invitation. There are risks in making light of anything, but especially a life-threatening disease which impacts millions of people every day with the risk of blindness or losing a limb.
Nothing as serious as a joke
But if there was one thing I learned in my years of running Greenpeace’s online activism programme, it was that humor is digital rocket fuel, and when you can load the nosecone with an insight or a message or a new way of looking at the world, it can detonate in a powerful glitter bomb that can shift, however slightly, however slowly, the definition of what’s right, what’s normal, and what’s possible.
Think of what Will and Grace did in the US for the perception of gay lifestyles, or how Steven Colbert, Samantha Bee, Jimmy Kimmel, and Hannah Gadsby reinforce political and social values with laughs. Check out A Comedian and An Activist Walk into a Bar, a brilliant overview of the interface between comedy and social change. It described comedy as “a rabidly shared and avidly consumed form of cultural narrative” which made our foxy storytelling whiskers twitch with pleasure. Because at Dancing Fox we know that the secret of social change is to shift the narratives that make one thing normal and another weird. Women being unable to vote used to be normal, because the dominant narrative was that women were inferior to men. But once you shift that narrative, it’s no longer normal for women to be unable to vote, or own property, or have a bank account: it’s just plain weird.
This project was about reframing people with diabetes. Rather than targets of pity or shame, we could present them as people who commit daily death-defying acts deserving of admiration, awe, and respect. We could pull back the curtains on what pisses them off about what “Normies” do by showing it through their eyes. We could disarm with giggles and persuade with punchlines. We could turn comedians into secret agents of social change. Not just as joke-tellers, but as truth-tellers.
After three days of brainstorming, we had a ton of ideas which we winnowed down to five skits. Some we scripted tightly, others were just frames we let our comedians play in. We filmed it all in a quirky San Francisco hotel and a nearby bar, and edited the results into a set of short videos.
November is diabetes awareness month — join the movement
We consider these pilots, proof-of-concept shorts that we hope will be followed by more community content, more playshop madness, and some pointy conversations around how society treats people with diabetes, and how we can all help make life just a little easier for the superheroes who deal with this disease every day.
Videos will roll out over the next five weeks featuring comedians Sam Morrison, Kelsey Bascom, Kesha Carter, Justin Eastzer, and Ashley Monique. The films were directed and produced by Ben Jehoshua and Image Line Productions. And the creative cooking was done by a rag tag collective of artists, comedians, experts and activists that included Santiago Paulos, Jim Carroll, Kat Savage, Eileen Opatut, Marnee Benson, Selin Varol, Sara Leal, Beth Strachan, Irene Canuti, Carrie Van Horn, Matthew Garza, and Clare Kenny.
You can do your part by laughing, liking, sharing, commenting, and joining the mailing list for early access to videos as they’re released and more ways you can help stick it to stigma.