A Leak in the System: When a Little Girl Felt Sorry for My Son

This week, we are honored to share with you this moving piece about the damage that pity for individuals with disabilities can cause. This post, written by Mary Evelyn from What Do You Do, Dear? appropriately and powerfully identifies the problem with feeling sorry for people with disabilities. We have confidence that, had the little girl in the gauzy white dress been exposed to inclusive experiences, she would have been able to see the joy and excitement– the humanity– in Simeon that we can see from reading his mom’s blog.

She was maybe six-years-old, smiling and ladylike in a gauzy white dress. The kind of dress that makes me want a daughter. The kind of smile that’s heavy on sugar and light on spice. She walked up to my son, as he wheeled in circles outside the sanctuary after church, and planted herself squarely in front of his wheelchair. They studied each other closely. He waved hello.

And then, without taking her eyes from his face, she said  “I feel sorry for him.”

I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs.

Children ask all sorts of question about my son.

Why is he in that? Why can’t he walk? What’s wrong with him? Will he need that thing forever?

But questions are easy. For children, questions have answers.

“I feel sorry for him” is not a question. It is a statement of fact. A revelation. A public disclosure of something I know to be true. Although I fight against it and try to believe otherwise, I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system.

A system that tells her my son’s wheelchair is “very sad.”

A system that tells her he is a “poor thing.”

A system that uses words like confined to, suffers from, and bound.

A system that prefers to see people like my son as victims, as recipients of charity, as less-fortunates waiting to be healed, rather than seeing them as neighbors, colleagues, teachers, and friends.

A system that tells her my son smiles “in spite of” rather than simply because he too is a child and has access to all the same earthly wonders that she does.

Wonders like fireflies, and candlelight, and going fast, and little girls in gauzy white dresses.

So I stood there shocked out of my comfort and fumbling around for words to make this right. I wanted so desperately to undo the damage done by a system that is still learning to accept my son. But I was tongue tied and clumsy as I mumbled something about “not needing to feel sorry…” And I walked away feeling like a failure. As if this little girl represented the whole world and I had missed my chance to set the record straight.

I realized I am very small. I am only one person. 

Then last week, sitting by the pool with my husband and my splishy-splashy little boy, I heard it again. This time from a teen, maybe 19-years-old. He had seen us there a few times. Today he had a girl with him. A girl he liked. I could tell. He gestured in our direction.

“Something’s wrong with that kid” he whispered to her. “Did you see his back? He can’t walk. So sad…”

I felt it more than I heard it. And I put my head down waiting for her reply. Her agreement. Her inevitable recognition that yes, my child’s life is very very sad.

“It’s not sad” she said, looking at my son with so much kindness. “My brother was in the Special Olympics. Nothing sad about it. That kid is cute.”

And then my heart turned to mush and I closed my eyes to keep from crying.

I wanted to hug her. I wanted to tell her how rare she is. And how lovely. I wanted to believe she was once a little girl in a gauzy white dress.

More than anything, I wanted to thank her for reminding me that I am not the only one who sees my son for who he is. Unconfined, unbound, human.

I am only one person.

But I am not alone.

–Written by Mary Evelyn, author of What Do You Do, Dear? To view her original post, click here.

Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.