Why I Won't Tell You That I Have A Disability

asleep in my arms

Returning from an early morning physical therapy session a few weeks back, I grabbed an ice pack from the freezer for my back, and sat down on the couch next to my youngest son who was home from school with the stomach flu. He offered me the edge of his blanket, and we cuddled.

I told him about some permanent changes the doctor had recommended that morning. I was going to have to quit doing certain activities and modify others to avoid another surgery. It wasn't what I had wanted to hear, and I was feeling grumpy about it.

He wiggled around on the couch to face me and said, “Well Mom, you're going to have to learn some new strategies.” I did a double-take. Yes, it was my 10-year-old offering this suggestion.

I confessed to him that I didn't like the idea of not being able to do something or of needing to ask for help to do things. As a child who has struggled with a reading disability (dyslexia) and attention deficit hyperactivity disorder (ADHD), he understands about needing to ask for help.

“Mom,” he said in a whispery voice, “I don't tell people that I have a disability because then people will treat me different.” He fiddled with the blanket, then continued, “My ADHD, I'll tell, but only to certain people, like family and really close friends. Because they actually understand it. But my dyslexia, I don't tell,” he said.

Not to anyone? I asked.

He shook his head.

His remark surprised me, especially since we moved him to a different school two years ago. He now receives more intensive reading instruction, and is surrounded by positive messages about differences in others.

Was this a problem at his new school? I asked.

“No,” he said, but he felt it was a problem at his old school and was worried it would be everywhere else. His face clouded, he sat up suddenly and said, “If people know you have a disability, they consider you not to be able to do things. Sometimes they don't even let you try.”

At his old school, the library marked his library card with his reading level, and he was prevented from checking out books that school staff thought were too difficult for him. Both at school and at a community activity club, adults jumped in to correct his pronunciation when he read aloud and supplied the correct word if he hesitated. They just said it for me, he complained.

“It's not true that you're not able,” he said. Looking out the window at the stark silhouette of the leafless maple against the sky, he continued, “It just makes it harder for you, and you just have to find strategies to do it.”

His willingness to try strategies (as we call them at our house) has always made me smile. But now a lump formed in my throat as I gathered him back under his blanket. I wished I could protect him from this double difficulty – first with his own neurology and then again with the attitudes of our society.

“I don't even like the word disability,” he asserted. “Disability means you can't do something. And that's not true. I mean everybody has something they can't do. Disability categorizes people in a bad way. I would call it a learning challenge instead.”

I'm not a big fan of the word 'disability' either, but I’ve come to understand that access to services is determined by sorting people into categories. It's a compromise that tries to balance the needs of different groups of people. My son doesn't see it that way.

“I mean, it's not right that you need a label to get services. What if a kid has trouble reading, but not a diagnosis?” he asked. He wanted to know why that kid couldn’t be allowed use audio supports if it made it easier for him?

I bit my tongue to avoid automatically answering with adult rationalizations. In that moment, as we lay on the couch in the weak rays of the late November sun, I wanted him to be able to imagine that a better world could exist. I wanted him to be able to hold that possibility in his heart.

“It makes you think differently about how our country is set up. It's set up for people without learning difficulties. Not for people with them,” he continued with a yawn.

His eyes closed. For a while I thought he'd drifted off to sleep, leaving me in awe at the insight of my 10-year-old son. Then his eyes fluttered open for an instant, and he said, “Maybe learning challenge isn't the right word. Maybe it's a life challenge.”

About Author:

Nora Livesay is a graduate student in linguistics, works as a teaching and research assistant at the University of Minnesota, and is mother to two wonderful boys who face extra challenges in life. Her favorite ways to recharge are knitting, reading science fiction-fantasy and being in nature.

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