garbage bag of disease

The Stigma of a Chronic Condition

While I was growing up, it wasn’t just my red hair and freckles that made me feel alienated from others; it was also type 1 diabetes (T1D). One of my first memories signalling the stigma of having a chronic disease was in grade five on a school trip to an outdoor camp in the boondocks, circa 1983.

For some, including myself, it was the first trip away from home without our parents. This was my chance to be just like a regular kid—going on a school outing and being like everyone else. Sure, I would have to check my blood sugar, count carbs, and take shots of insulin. But this trip signified freedom! Diabetes wasn’t going to stop me from joining the crazy kids jumping off the bell tower screaming “Geronimo!” or chirruping like a cheetah in the forest. Or was it…?

“Does everyone understand the Survival Game?” my teacher Mrs. Rawley asked while waving her arms at the front of the room to command students’ attention.

My classmate David was a few steps ahead of her question. “Mrs. Rawley, I want to be a carnivore!” David’s voice raised an octave as he continued. “They have the most power and can eat herbivores or omnivores.”

“Well, no…Just wait, David. Whether you’re a carnivore, herbivore, or omnivore, it doesn’t matter. In the Survival Game, you have to think of a strategy that works best for your needs. Now pay attention. I’m going to hand out the vests now. They will be green, brown, or red—for herbivores, omnivores, and carnivores, respectively.”

She circulated through the room handing out vests, eliciting screeches of excitement from people like David—who got the ultimate title, carnivore—and Shannon—who beamed about being a herbivore, since she was vegetarian. By the time Mrs. Rawley finished, predator and prey spirit permeated the room. David howled and clenched his fingers into claws.

I looked around. Where was my vest? As if on cue, Mrs. Rawley’s voice silenced the room. “Hold on, everyone! You may notice that a few people don’t have vests. Put your hand up if you don’t have one.”

There were six of us.

Mrs. Rawley continued. “Good news for you people. I’ve got vests for fire, flood, famine, cold, and the hunter. The goal of these threats is to kill as many animals as possible by taking the ‘life’ cards from the greens, browns, and reds. The hunter gets to chase people with a water gun!” She pulled out a bright-orange Nerf water gun from under the table.

“Wait!” screamed David. “I want to be the hunter! Mrs. Rawley, pick me!” He stretched his hand high in the air to volunteer, touching the ceiling (which likely meant a disturbance of asbestos).

“Nope. You’re a carnivore, David.” She smiled slyly and passed out the water gun and remaining vests.

I wanted to be fire or flood. That would be so cool! I watched as the last vest was given out to Stuart, who was sitting beside me.

Wait a second. Why didn’t I get a vest?

Mrs. Rawley returned to the front of the room.

“Now who’s left?” she asked.

I raised my hand. I was the only one without a part.

“That’s right, Kim. Well, this game is probably too much for you and your diabetes. But there’s good news. You’re going to have a special role that suits you perfectly: the disease.” She pulled out a green garbage bag with cut-outs for my head and arms.

Gulp. Me? The disease?

She handed me the bag.

“Since you’re the only one in the class with a real disease, this role was made for you. As the disease, sit back and relax. No need to overexert yourself. After all, everyone is petrified of the disease. Take a stroll in the forest and if you happen upon a player in the game—ZAP! If the disease—that’s you—merely lays eyes on any player, they’re done…gonzo…thrown out of the game,” she shifted her gaze from me to the crowd of antsy students and continued, “So what are you waiting for, everyone? Get a move on! Go!” she ordered, ushering people outside.

Students rushed out the door at top speed, revelling in the thought of running away from the disease, yelling things like “That disease is coming nowhere near me” and “Eww, disease.”

In seconds, the room was empty. As I walked towards the exit, I struggled to pull on my polyethylene sack—my garbage bag of disease.

I will never forget how I felt that day—holding back tears, walking through the forest sweating buckets in my humiliating garbage bag while all of my peers sprinted away from me terrified. I would like to think that Mrs. Rawley was looking out for my best interests, oblivious to the fact that she had sparked a buzz about how I was a walking cootie with diabetes. Have I been haunted by grade-five trash-bag-clad me? Absolutely.

However, I’ve somehow learned how to walk by garbage bins without being crushed by the mirage of mini-Mrs. Rawley armed with a pair of scissors, feverishly cutting out head and arm holes in a bag made just for me. Fortunately, this experience (among other flashbacks that are equally startling) made me extremely grateful to know how others feel when they’re excluded—regardless of the reason why. This poignant insight is one reason why I’m a staunch proponent of equity, diversity and inclusivity strategies and outreach,

My garbage bag incident will forever serve as a reminder: if we as a society fail to recognize and learn how to practise the principles of inclusivity, we will be leaving a lot of people behind. The power of inclusivity—and exclusivity—ultimately shapes young people’s images of themselves . . . and something we all play a part in.