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)
(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)