I have had laryngitis for the past couple of days and apart from not feeling great, I have had no voice.
As a speech-therapist, my voice is a critical part of my work. Without my voice, I haven’t been able to work. But, having no voice has taught me some life lessons. It has given me some perspective of what it must be like to be an AAC (augmentative, alternative communication) user.
I have been dropped into the deep end of experiencing life with AAC; albeit only for a short time.
My first life lesson arrived when I woke up feeling crappy with no voice. I texted all my clients for the day to let them know I would not be in. I was able to communicate the problem to them.
However, when you are not well, the person that really gives you TLC is your mom and I really wanted to let her know that I wasn’t well. Unfortunately, my mom has lost her cellphone, and so I couldn’t text her. I decided to call her on the landline and use TouchChat to communicate. I selected TouchChat because this is the AAC language that I am most ‘fluent’ in.
My mom was not in and I couldn’t tell her how bad I felt. I couldn’t let her know that it would be great to have some honey tea or ice-water, or just some TLC. Luckily, even when you are an adult-child, mom’s still have a sixth sense, and we landed up chatting on FaceBook messenger.
- The ability to talk to my mom made me feel better. I could express my frustration, stress and anger (at everyone else in my family) who didn’t take the time to come and talk to me. Having laryngitis means that there is no calling from one end of the house to another. If I needed tea I had to get up and do it myself. People who have complex communicative needs, still need to communicate feelings, fears, anxiety and anger. If someone doesn’t have the means to communicate verbally, we need to give them a voice and provide them with the tools to use it.
After another visit to the doctor and some extra medication, I felt better BUT I still had no voice. I decided to venture out to get some things at the store. I took my iPad with me in case i needed to communicate. After wandering around the store trying to find what I needed, I eventually tried to engage the help of one of the shop assistants. When you can’t say “excuse me” in order to gain someone’s attention, you need to attempt to establish eye-contact in order to communicate intent. I landed up running up and down the aisles in order to try and physically catch somebody to ask. No-one was really going out of their way to try and assist me. It was easier for them to avoid eye-contact and not have the conversation.
- It’s frustrating when the voice you have cannot be heard. I nearly gave up on initiating the conversation because the effort required to do so was too much. I almost didn’t even ask for the item that I wanted.
- If using AAC is too difficult, then it will be abandoned. If access to the device is too difficult or too cumbersome, or too anything, then it is unlikely that the AAC user will make the effort.
- It is not only incumbent on us to provide a means to communicate, but we also need to ensure that access is readily and easily available. Providing a device and training is not enough. Optimal access is required all of the time.
When I got to the till, the cashier was not there. She had gone to replenish the till paper and returned to the till via the scenic route. I was a bit annoyed because I had been waiting for a while.
As she sat down at the till, I typed in “hello, how are you?” using my device. She ignored the comment.
I thought that perhaps she had not heard me. She rang up my purchases and asked me if I needed a bag. I tapped in “yes” on my iPad. She ignored the response, but then she looked at me, so I nodded. She gave me a bag. I tapped in “thank-you very much.” The cashier laughed.
- I felt humiliated. Firstly, the cashier obviously chose to ignore my alternative means of communication. I understand that it was not something familiar to her and it was probably the first time she had encountered an AAC device. She didn’t know how to respond appropriately. Ignoring me was one thing, but laughing at the way I communicated invalidated everything that I had said.
- Educating others in the environment to accept different forms of communication is vital. In addition we need to respond appropriately to the communication that is used. I used the AAC device to say hello, please and thank-you. I was polite. Responding appropriately to all forms of communication is a critical part of establishing and maintaining communication. If AAC use is treated like a cool party trick, it is no wonder that users may only choose to ‘perform’ when they are in the mood or in a certain context.
On leaving the store, you have to go through a security check. There were two people performing the security checks. There was a long line of people with full shopping carts. I had three items and I had to stand in the same security-check line. I was annoyed, tired and not feeling great. I approached a couple of assistants who were standing around chatting. Using my device, I said, ” The line is very long. This is not okay.”
I was angry.
She shrugged her shoulders and told me to wait in the line.
- It is really difficult to express anger (or any emotion for that matter) using a robotic voice. At least she didn’t laugh, but I wasn’t able to communicate anger using words alone. I wanted to stamp my feet. I wanted to shout and perform.
- Behaviour is communication! If I wasn’t an adult (with laryngitis), the chances are I would have stamped my feet and maybe screamed. We need to ensure that in order to communicate appropriately, the AAC user is provided with the words to express their thoughts, wishes, ideas and feelings. Sometimes the words may not be enough, and we need to look beyond the words into the communication behaviour.
When I sat down to have dinner with my family that evening, I tried to tell them about my day.
“We can’t hear you mom!”
“Just stop trying to talk and eat!”
“Why don’t you use your AAC device?” “It’s what you do isn’t it?”
These are some of the responses that I got from my family.
These are the messages that I got from the people who care about me the most.
- Just because they could not hear (understand) me well, it did not make my message less important.
- My messages weren’t clear to them and so they dismissed ME. They dismissed my voice, my feelings, and my experiences because listening to me required a little extra effort from them. Listening to my whispered voice meant that they had to take the time to REALLY listen. They would have to put down the clinking cutlery. They would have to stop having multiple conversations. They would have to slow down and take more time out their busy schedules (it’s exam time), to listen to me. It was easier for them to dismiss what I had to say.
- Why didn’t I use my AAC device? I am slow. Communication using an AAC system is much much slower. I knew there was no way I could convey my whole story using AAC. If someone is able to convey the message verbally, then they will do it. BUT, if they are not able to convey their message effectively using verbal communication, then it is incumbent upon you (the listener and communication partner), to ensure that you give the person time to convey their message. Make sure you let them know that their message is important to you. If you dismiss the importance of the message, I have no doubt, that future dinner time conversations will be limited to “pass the salt” and “all done.”
I did not set out to do an AAC experiment.
Perhaps my experience is a bit like the cartoon that I used for this post:
You may be able to get to the prize, but without all the tools, you cannot take anything from it.
This brings me back to the beginning.
- Provide all of the words, all of the time
- Listen to what is communicated
- Respond appropriately to communication attempts and intent
- Ensure that access to AAC is optimal and easy
- Listen and look for how the message is communicated
- Educate others in the environment about AAC
- Learn the language; if you can’t speak it, you can’t model it
I hope that for the short time that I stepped into an AAC user’s shoes, I learnt some life-lessons that will make me grow as a therapist.