Nonspeaking people have more to say

  • 3 minute read

For AAC Awareness Month 2022, we’re introducing #MoretoSay, a campaign to challenge assumptions about people who cannot speak. Assumptions that they have no opinions or anything to add to a conversation. Pam Harris, an AAC expert and Josh’s mom found that her son had more to say.

I’d like to share a story about my son Josh and me—with his permission, of course.

‘Furious’

It was well past lights out, and this was the second time he’d undressed and tossed his pajamas across the room.

“Josh, what’s the matter?”

“FURIOUS.”

I was baffled. He seemed to know exactly what he wanted but, at the same time, could not tell me. All he could say was, “FURIOUS.”

I helped him put on another set of pajamas and helped him back to bed.

Nope. In a blink, the bottoms were off and flying past me with a whoosh.

“FURIOUS.”

Josh grabbed his letter board and spelled, “STIPLEPANS.”

All right, something new. But WTF were STIPLEPANS? “Spell it again, Josh. Slow down.”

“STIPLEPANS.”

The familiar dread started to set in. Josh had something very important to tell me, and he couldn’t. It sucked. I was tired, he was tired, and all he could tell me was that he was furious about stiplepans.

I kept repeating to myself, hoping it would turn into a recognizable word.

STIPLEPANS. STIPLE. PANS. STIP.LE. PANS. PANTS.

“Striped pants?” I asked. YES, he nodded.

He wanted to wear his striped pajama bottoms. Wearing his striped pants, Josh got into bed and went to sleep.

An illustration of striped pajama bottoms on a while background

Start with asking

This happened in 2016. Josh was 27 years old.

How long had Josh been saying he cared about what he wears? How long had he told us that he likes stripes? How long did he have more to say, and we just assumed we knew what he wanted?

People who use AAC (Augmentative and Alternative Communication) as their primary means of communication often report similar frustrations with communication. There are also stories about people being denied an AAC system that allows the user to express thoughts, feelings, and opinions.

As a member of AssistiveWare’s Support team, I get to experience these stories firsthand. The one about a classroom teacher who wanted to delete the “No” button. The story of a girl who was locked in a closet because she was considered incapable of learning and communicating.

We constantly hear from nonspeaking people how frustrating it is when others have not heard or understood their message. Or when they are not given enough time to respond during conversations.

Be the change

This is why we are committed to helping AAC users tell their stories, and we invite you to join us. Throughout October, to raise more awareness about AAC, we’ll be sharing this and similar stories on our social media channels.

Please help us reach more people with these stories, and share your own! Use the hashtags #MoreToSay and #AACAwarenessMonth and let your message join others in making people aware that AAC users have more to say:

  • Create a post with text, photo or video.
  • Use the handy template from our Instagram to create a Story.
  • Download, print and display the poster.

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