Every 1 welcome: thinking differently about type 1 diabetes | Lucinda McGroarty | TEDxECUAD

September 4, 2019

Translator: Mizuki Deguchi
Reviewer: Peter van de Ven When I was ten years old, I was rushed by ambulance from
our family cottage to the nearby hospital. Within a few minutes
of entering the Emergency, they did a simple blood test, and moments later
I was told by a kind doctor, “You have type 1 diabetes.” I had no idea of the significance
of this diagnosis, but I instinctively felt my life
would never be the same. The next morning I was transferred
to SickKids Hospital in Toronto, where my parents and I
were taught the basics. No one knows the exact cause
of type 1 diabetes, but it occurs when the immune system
mistakenly attacks and destroys the insulin producing cells
in the pancreas. We were told that insulin
moves glucose, or sugar, out of the bloodstream
and into cells to create energy. Without insulin, the body simply
cannot access this fuel to live. So, from this point on I would have to
rely on an external source of insulin and manually balance this
with food and physical activity. Being a resilient ten-year-old
surrounded by plenty of support, I dealt with all of this in stride. But as my life became more complex,
so did my diabetes. At the age of 18, I moved
to an adult diabetes clinic, where I was determined to manage
my disease on my own and no longer share
the responsibility with my parents. But instead of feeling
strong and independent, I felt increasingly overwhelmed and alone. As my support systems slipped away, I realized that my disease had slowly
become invisible to everyone around me. Towards the start of my master’s degree, the relentless demands
of daily management had me beat. I was rapidly losing the momentum
I needed to care for my diabetes. I didn’t know where to turn,
but I knew I had to do something. And so I converted my apathy into action and decided to focus
my design thesis project on type 1 diabetes. My hope was that I could somehow use
design to inspire me to think differently. As I began my research, I realized I was far from alone
in dealing with this momentum problem. I learned that the emotional distress
brought on by living with this disease is often referred to as “diabetes burnout.” Unsurprisingly, this phenomenon is particularly prevalent among those managing
the daily complexities of this disease completely on their own. At the time of this discovery,
I was conducting one-on-one interviews with a group of young adult
type 1 diabetics. And I learned of a silver lining. A small number of the participants actually felt very positive
about their diabetes. Amazingly, they attributed their optimism to
their relationships with other diabetics. This contradicted my reality. This notion of friendship,
of community went against what I believed
to be good diabetes management – independent and completely self-managed. Knowing very little
about the adult diabetes community, I was skeptical of their enthusiasm. But I could not have been more wrong. Over the next eighteen months,
I met countless other diabetics through support groups, social gatherings,
fundraisers, and forums, and I began to experience the benefits
of the community firsthand. Here’s what I learned. The community offers support
in three key ways: a sense of connection, knowledge exchange, and positive thinking. And by offering
this dynamic support system, the community gives
an individual the chance to rebuild their resilience
and defeat burnout. But despite this, I found a big problem: most type 1 diabetics overlook
the community as a resource, believing they need more time away
from their disease, as opposed to more time with it. From my own personal experience
prior to this project, I had completely disregarded
the community, never thinking it could be
a source of inspiration. With this in mind, the goal of my project
became very clear. I had to convince these type 1 diabetics
to join the type 1 diabetes community. I wanted to shift their view
of diabetes management from something experienced alone
to something experienced together. The question was,
how was I going to do this? The first answer to this came from observing
how type 1 diabetics use language. They share terms like “dia-buddy,” which is used to describe
a friend with diabetes, or “dia-anniversary,” which signifies
the day of one’s diagnosis. These humorous hacks in language
add levity to this disease and allow type 1 diabetics
to think differently. The second answer to this
came from my work as a storyteller. In my undergrad, I argued how interior designers
can add meaning to space through the use of story. To prove my point, I shot a short film
along Eastern Avenue in Toronto, and I showed how the film’s story
added context and meaning to this very industrial area. And so I employed both language
and story as design tools to shift type 1 diabetics’ perceptions
around the type 1 diabetes community. So this brings us to my final design. I’d like to share with you now
the story of The 1 Club, the story of a secret society
of type 1 diabetics. (Video) (Crickets) (Car arriving) (Car door opening) (Footsteps approaching) (Jazz music) (Light switch) (Rustling) [Dear 1, welcome to The 1 Club.] [We are a secret society] [of blood-testing kindred.] Female character: Mm. (Rustling) (Light switch) (Ambient music) (Footsteps) (Footsteps) (Footsteps) (Slam) (Footsteps) (Knocking) Male character: Hmm. (Gasp) (Jazz music) (Slam) (Jazz music) (Buzz) [Every 1 Welcome] (On stage) (Applause) So why a secret society? Well, the construct of a secret society mirrors many aspects
of the type 1 diabetes community. Secret societies are, by nature, secret congregations
operating within the public realm. Similarly, type 1 diabetics live
under this same shroud of mystery and go about their daily
ritualistic practices quite easily undetected by strangers,
colleagues, and friends. In a literal sense, type 1 diabetics
covertly treat a hidden disease, making the community,
by default, a secret one. To build the story of The 1 Club, I drew parallels between the language
of the type 1 diabetes community and that of a secret society. For example, from “community” to “secret society.” Once diagnosed, a type 1 diabetic is automatically
considered a member of the The 1 Club. From “Banting and Best”
to “Founding Fathers.” Having discovered
a synthetic form of insulin in 1921, Sir Frederick Banting and Charles Best were at the forefront
of type 1 diabetes care. They are the founding fathers of The 1 Club. From “routine” to “ritual.” Practices such as the blood sugar test, or carb-counting, are inclusive only
to members of The 1 Club; these are their bond-building rituals. From “shared information”
to “secret knowledge.” 1 Club members exclusively
share information related to better diabetes management,
making this their secret knowledge. And from “friendship” to “allegiance.” By pledging an allegiance to The 1 Club,
members pledge to support one another. To further explore these parallels, I developed a series
of handmade artifacts. The 1 Club crest, new member letter,
oath of optimism, and neon sign act as their own chapters to this story and work to bring this fictional world
into the real world. These objects aid
in repositioning the community from something that is uninspiring,
tedious, and ignored, to something that is exclusive,
secretive, and shared. Reflecting on my thesis, I realize that so much of this project
was about following my gut in a direction that was
as emotional as it was logical. And this led me to an incredible place. Months after I graduated, I was backpacking
in the breathtaking backcountry of Gros Morne National Park
in Newfoundland with a group of type 1 diabetics. And there it occurred to me,
that I was no longer alone. Chronic disease is constant, and this is part of what makes it
so incredibly challenging. The key is to build resilience, the type of resilience
I had as a ten-year-old. I hope others see the potential
for language and story to create a renewable sense of strength for those suffering
from chronic conditions. But if nothing else, I hope this fantastical society
inspires type 1 diabetics struggling with burnout
to seek refuge in the community. I hope type 1 diabetics walk away
remembering one simple thing: “Every 1 Welcome.” Thank you. (Applause)

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