We couldn't help but share this post by Lance Mclemore. Lance users an Accent with LAMP and is an extremely proficient communicator. Read on and we know you will appreciate Lances candid and thought provoking post about how we often make erroneous assumptions.
This will be my first blog post, and I have chosen to write about something that has bothered me for quite some time. It has been inspired by a few conversations I’ve had with some people and my own experiences. AAC stands for augmentative and alternative communication. Over the years I have noticed that many people, including the experts, forget about the word “augmentative.” There seems to be confusion about and sometimes hostility towards people who use AAC part time. I personally have to cope with this confusion and hostility, so I feel it’s necessary to explore the topic some.
I don’t consider myself an expert, but it’s my understanding that most or many people who use AAC have some useable speech. I and many other AAC users are in a kind of gray zone; we exist somewhere between speaking and non-speaking. An analogy that comes to my mind is blindness. Most people who identify as blind have some remaining vision. And most people who use a white cane for orientation and mobility have remaining vision. I have seen many blind people on YouTube talking about the grief that other people give them because they use a cane. People may think to themselves, “You can see some, so why do you need that cane?” This question seems absurd to me. If you change the words around some, the absurdity becomes more obvious.
- “You can hear some, so why do you need that hearing aid?”
- “You can see some, so why do you need those eyeglasses?”
- “You can walk some, so why do you need that wheelchair?”
You could continue asking questions like this ad infinitum. We all use aids of one kind or another to make our lives easier, but when it comes to disability related aids, logic goes out the window. I’m guessing that nobody has ever asked you why you drive a car instead of walk everywhere. On the other hand, I have had my use of AAC challenged and questioned multiple times. And I’m sure many people have questions and sarcastic comments that they never say to my face.
Speech impairment exists on a spectrum like blindness or deafness. There are many reasons why a person could have significantly impaired speech: autism, cerebral palsy, stroke, traumatic brain injury, ALS, Rett syndrome, etc. I’ll use myself as an example. My speech is impaired due to severe apraxia. I understand everything that is said to me. I know what I want to say, but it’s very difficult to make the muscles involved with speech do as I wish. As a result, sounds come out distorted, some sounds are substituted for others, some sounds or words are dropped entirely, and suffice it to say, it’s a big mess to most listeners. I like to compare my speech to the electrical system in a house. Imagine that an electrician wired your house with wire that was a smaller gauge than necessary. If too great a power demand was placed on that circuit, it would overheat and cause the breaker to turn off. This connection between my brain and mouth is fragile. I might be able to say a two to three-word sentence, but anything longer gets less and less intelligible. And I have to exert ever more energy to keep talking. After some time passes, my speech completely breaks down, most of my energy is gone, I can’t really concentrate on anything, and then I have to be left alone to recover. I’m sure this sounds peculiar to the average person, and they have trouble relating. For the average person their speech is stable over time, and they cannot understand how speech quality could fluctuate so much.
I’ve tried to explain this to people, but it seems like it usually causes confusion and misunderstanding. I say to them, “I use a communication device because my speech is difficult to understand.” A response I have gotten is something like, “you can go ahead and talk. I’ll be able to understand.” It’s as though they see it as a challenge. I might try to explain the fatigue it causes me, but then I am seen as being too lazy to make the effort to talk. Believe me when I say that a lazy person would not use an AAC device. My remaining speech is not adequate to meet all my communication needs, and I know many other AAC users are in the same position. Please don’t give me and other people like me grief for using a communication device. There is a reason we choose to use AAC. It wouldn’t make sense to use it if we could just say it with our mouths. Communication is difficult enough already, so don’t make it more difficult with your erroneous assumptions. You cannot assume that just because we might talk some of the time that we should be able to talk all the time. Remember that one application of AAC is to augment remaining speech. We shouldn’t have to stress ourselves out and push ourselves to the point of mental and physical exhaustion just so we can use a method of communication that is unclear and unreliable. I’m well aware that an AAC device makes people uncomfortable, and it’s often slow and awkward for the listener. However, we have to use the communication method that works best for us.
In conclusion, I have a few words for other AAC users who might be reading this. You have the right to decide how you communicate. Whether you choose to speak, type, gesture, or a combination of methods, you must do what is best for you. Don’t be ashamed of your communication tools, and don’t let anyone bully you into using something that diminishes your ability to communicate. If you find that speech is useful at times, then use it. And then at other times if AAC is better, then use that. I know it’s easier said than done, and I have to admit I still struggle with it. However, acquiescing to the bullies is worse.
I also want to say a few things to those supporting AAC users. Help us to find our voice, the best voice possible. Don’t insist that we use something that works best for you but not for us. Unfortunately, I think that happens a lot. Don’t take an all or nothing approach to communication. You use speech, texting, email, video conferencing, etc. We also need multiple communication methods. Our communication difficulties put us at a disadvantage, so try not to make it worse by saddling us with a voice that doesn’t work well for us. Allow and encourage any and all forms of communication.
By Lance McLemore, PRC-Saltillo Blogger