Disability in verse

We shared a poem by 16-year-old inpatient Maddy Workman (left) a few weeks ago. She'd spent five months at Holland Bloorview doing rehab following two hip surgeries and faces another one in the new year.

It turns out Maddy's mom Danielle (right) is also a poet. "I wrote this about a year ago, to bring awareness to the fact that so many, including parents, have skewed perceptions of people with different abilities," Danielle says. "People often speak to Maddy as if she's a little child or speak over her, asking me for her information and jumping in to finish her sentences. And generally speaking, people are surprised that she is physically able to do things like draw a picture or write poetry. Even write her name by hand, hence where the poem came."

Maddy's Poem
By Danielle Workman

I wait.

I wait anxiously.
I wait while I watch.
I watch her while she struggles.
Struggles to hold a pen in her writhing fingers clenched in a fist.
I wait and I watch while she struggles to make letters appear on paper.
I listen to her breathe, as the air rattles in her trachea grating over the scar tissue.
The scar tissue a constant reminder of the tube that kept her alive.
Kept alive despite the odds.
Kept alive despite the consequences that no one could know.
Kept alive despite faced with the choice to not.
No mother should ever have to make that choice because how is it a choice that can be made?
I can hear the struggle in her breath.
I can see the struggle as she wills her fingers to do as she tells them too.
Fierce determination in her eyes.
This labours on, as she etches out slowly one stroke at a time eventually making a rudimentary looking letter.
The letter M.
M for martyr?
M for magnificent?
M for Maddy?

And then she smiles, clearly pleased with herself.
I waited and I watched again while she started the next letter.
Something was different.
She didn't appear to be struggling.
Her fingers still writhing holding her pen tightly gripped in her clenched fist.
I listened.
I could still hear the air being sucked in over the scar tissue while she worked so diligently.
The rest of her body tightly wound, and yet this time I could see her smile, while she struggled.
Or was it struggling?
What was different?

Me.

The difference was me.
She's always just done what she needs to do.
It was as if I was seeing her through a new lens, despite her disability.
I was no longer pitying her.
Nor was I glorifying her.
I could justsee her clearly now.

I waited and watched while she continued to craft her letters.
Each stroke laboured with intensity.
Each letter created, born out of will.
I waited and watched while her struggles dissipated and all that remained for my heart to see was her smile.
Her letters complete.
Her heart beating every beat full of pride.
Her letters simply read
Mom