The Max Life

POPCORN 🍿

Lillian, a woman with mild intellectual disability must trade in her good behaviour points for a snack at the concession stand.

Yesterday, I met a wonderful young woman. I have changed her name to respect her privacy.
She was at the trampoline place where I bring Max.

Max was having his popcorn snack. Just nearby, a lovely young woman was going down the slides. I commented on how brave she was. I'm fearful of heights.

She came up to me and said this was her first time here. She was with a group with their support persons. She asked me if Max was my son. Then she said "Hi Max." Max looked at her and smiled.

Lillian let me know that although she loved the slides, that she was getting older. That she now had a nephew. She couldn't have been more than 25. She told me that she was like Max and loved popcorn, too. She smiled and explained how she was a "chips and popcorn girly."

Max needed something, so I excused myself from the conversation.

A few minutes later, I approached Lillian's support worker and let him know how amazing Lillian was. I wanted to buy her some popcorn from the concession stand so she could come sit with Max if she wanted to.

What he responded next would bring grief and anger to my heart.

"No, thank you, she has to trade in "good behaviour points" for things."

My face must have changed. Because he stopped smiling.
I asked him what training support workers need to be with Lillian. He said, "Training you mean, like ABA?"

I asked him what the name of his agency was. This is when the conversation stopped. He nervously started walking away.

Max was on the move. I didn't want to make a scene.

When it was time to leave, I saw Lillian sitting at the long lunch table with her peers. She had a sandwich and a cute purple cup. I gently lay my hand on her shoulder and let her know we were leaving. She smiled and asked to see Max, but Max was on his way out.

Imagine being an adult and being told when you could enjoy your snack? Being told when you could shower and when you could leave, if at all?

Imagine saying, "No" to something and others automatically seeing defiance and non-compliance instead of nervous system dysregulation, illness, tiredness, or hunger?
A token board and notes in a chart now dictated how you would be treated, or what you had access to?

I held it together until I got to the car. Then the tears wouldn't stop.

What life does one have if they can't even buy their own snack, or even allow someone to give it as a gift because having points in a "good behavior chart" comes first?

Lillian could be working.
She could be volunteering.
She could be with friends and family, all with support.
She is everything I could only wish Max to be.
She could be helping me with Max.

And yet, some stranger decides each day what she can/cannot do.

This isn't inclusion. It's institutionalization out loud. Only, that day, it was only me who saw it. Everyone else normalized it. Even praised it as some would say "at least they get out."

On my way out, I saw an employee trying to fix the coffee machine. Guess who was trying to buy a coffee for the "hard work" he was doing caring for Lillian? I usually don't see Karma coming in that quick. Today she swooped in on fire.

As I was driving the faces of Lilian and her friends flashed before me.

I looked in the rear view mirror at Max. He smiled back at me.
He took out his snack bag. He opened his container, and ate the rest of his popcorn.