by Catlaina Vrana, PRC-Saltillo Ambassador
Trailblazers
Using AAC in public is interesting. I have a lot of complicated feelings surrounding this topic.
I imagine every user will have different experiences in this area, and perspectives that have probably changed over time.
As a teenager, I didn’t really like to use my device around unfamiliar people. For one, I struggled deeply with social anxiety. I also didn’t want to be perceived as different.
But as I got older, I wanted to connect with other people in the community more. I wasn’t as afraid to use my device, and using it felt worth it to me, because I could advocate for my needs. When I had a Behavioral Health Professional, we would go out into the community together so I could have practice using my device at places like the grocery store, library and restaurants. This tremendously improved my confidence. After this, I started bringing my device everywhere, so I could speak for myself.
I’ve had a few interesting experiences using AAC in public. Here are a few of them:
The Amazing
- When waiting at the airport gate on our way to Closing The Gap last year, a woman sitting near my mom and I started a conversation about AAC. She wanted to know more about it because her young granddaughter was just starting out with a device. She told us that she was very excited at the possibility of talking with her granddaughter and getting to know her more.
- At the doctor’s office, a man came up to me to ask about my device and where he could get one for his autistic son. I explained what it was and how it worked, and gave him the number for our local PRC-Saltillo consultant. The reception desk overheard and called me over afterward so I could also give them information about PRC-Saltillo too.
- When eating breakfast at a hotel, this absolute cinnamon bun of a woman said, “I hope I’m not being nosey, but that is AMAZING. I’m so glad we have technology like that so people can communicate.” I hope she knows she was NOT being nosey, and she made my entire week.
- A couple weeks ago, I spent the weekend with my sister. We met at a board game restaurant and played games with her friends and coworkers. Everyone in that group was really amazing and we had a great time. It was the first time in my adult life where I was able to converse and tell jokes with other women my age.
The Good
Most people just pretend I’m not using a device when I talk, and treat me like anyone else. They understand that I need a little extra time to communicate while not bringing attention to my disability. For you communication partners out there, this kind of reaction is ideal most of the time. (At least in my opinion.)
The Ugh
- One time, when ordering at a restaurant, the waitress started laughing because I was using my device. It made me feel really self-conscious and embarrassed, though I don’t believe she was trying to be mean.
- Another time, my mom and I went to a fast food restaurant, and we both ordered. I took the cups the cashier gave us for water to the drinks fountain and filled them up. My mom joined me at the booth and said, “The cashier just asked me, “What happened to her?” She paused. “I said you have autism and use a device to speak, but that was a really rude question to ask.” I actually thought this was super funny, because, what was he expecting her to say? My device is obviously a disability aid, so the answer would have been related to that- and it is super weird to feel entitled to someone’s personal information, like details of their diagnosis.
The morning that I am writing this, I walked by myself to my local gas station to pick up a coffee. No one was mean, or rude. But when I got out of there, I was thinking, “why do I feel so awful, if nothing went wrong?” I thought about it more on the walk home.
I had brought my coffee to the cashier and paid for it. When the cashier handed me my change, I took a half-second to lift up my device (which I wear on a strap), to tell her, “thank you.” In that half-second, she asked, “do you need a bag,” after a pause. I think she didn’t know why I didn’t immediately leave after getting my change and she was confused. (A speaking person would have probably thanked her as they were getting their change, but I had to put my change in my bag first. I couldn’t communicate with my hands full. )
I think non-disabled people are very used to their own style of communication. Her reaction was not malicious. It wasn’t mean, or rude. I don’t even really think it was impatient. But there was a lack of understanding there, a lack of awareness of how someone who uses AAC communicates. In my head, I understand this. But subconsciously, that brief interaction made me feel unwelcome. Different, and not in a good way.
What’s the big deal? You might ask. Seriously, a half-second pause and a brief misunderstanding made you feel uncomfy?
What a baby. Grow up. Get a thicker skin.
If that’s your reaction, I politely invite you to step in my shoes for a while. Imagine you rely on a device to communicate. Oftentimes, when you speak in public, people turn their heads to do a double-take. Communication takes longer, it’s slower than speaking. Sometimes there is no room given in a conversation for you to join in. Sometimes, especially if you’re going out with a speaking person, friend, or caretaker, people will avoid looking at you or talking to you, and even if you communicate with your device, they might ignore that completely and look at whoevers with you for confirmation of what you’ve already said. Sometimes when making a phone call, the person on the other end hangs up midway through your sentence because they think you’re a bot or a prank call. Sometimes assumptions are made about your intelligence and abilities. Sometimes you’re infantilized. Sometimes your self-advocacy isn’t taken as seriously.
It’s little things like that. When one of those things happens, it doesn’t feel like a big deal, and you can just shrug it off. But think of hundreds or thousands of those little things, day after day, year after year. It eats at you a bit.
Using AAC can be frustrating. It can feel isolating. At the same time, having a device is one of the biggest blessings in my life. I’m able to communicate anything in the world. I’m able to make friends and connections with other people. The negatives of using a device are completely and utterly incomparable in size and substance to the positives.
The only thing that can alleviate ignorance is further awareness and acceptance of AAC users and of people who communicate differently. More and more people with communication disabilities are getting access to AAC today, which I think is absolutely amazing. I hope it will inspire social change and better acceptance of people with disabilities.
I believe this generation of AAC users are trailblazers. We’re brave. We’re fighters for change. We pave the way for future AAC users. We make the path a little easier to tread, bit by bit, and word by word.
Your voice matters.
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