By Meggin Nunamaker

Introduction

Based on my own experiences, and those of other AAC (Augmentative Alternative Communication) users, I have spoken with, the inability to communicate can cause excruciating frustration. Although, use of AAC devices can alleviate much of this frustration, and elicit positive emotions it can also evoke negative ones. In this blog post, I will explore how AAC usage elicits both positive, and negative emotions.

My Story

I first learned about AAC as an undergraduate speech language pathology student; I graduated in 2005 from Murray State University. In 2011, I graduated from Western Kentucky University with my master’s degree in communication disorders.  Unfortunately, a sequence of events along with the progression of my congenital muscle myopathy resulted in me becoming a permanent tracheostomy patient. For years, I was able to use different speaking valves. Toward the end of 2019, I permanently lost my voice. The pandemic did not help matters. I became an AAC user about 2020/2021. I have knowledge and experience from both, a clinician’s & a patient’s point of views.

The Effects of Being Unable to Communicate

Being unable to communicate often causes as was stated before, excruciating frustration. At times, people will come up with answers that are very different from what I am trying to communicate. For example, I’d try to make people understand my simple request or need such as, “I want water.”  The interaction would take me so much effort, that by the end of it, I was exhausted. With many opportunities to communicate, I will often stay silent because I feel like, the effort it’d take isn’t worth trying to communicate something.

This frustration can lead to feelings of anger- you feel trapped in your own body, and no one can hear you scream. Some people, I’ve observed, (myself included) feel grief for abilities they lost, especially ones like speaking, that used to be so easy for them. Whether their disabilities are developmental or acquired sadness, and anger can be provoked; For example, as I am observing people communicating so easily, they don’t even think about it, I cannot help but feel a pang of jealousy.

Positive Emotions

Many AAC users whose need of AAC (myself included in this group) is acquired, feel a great sense of relief at being able to communicate again. I felt a sense of normalcy I had lost. Thus I felt happy and excited to use AAC.

People who have developmental disabilities may be excited to use skills they’ve learned, leading to feeling a sense of relief to be able to communicate, and making their needs and wants known. I know when I was able to make my needs, wants, and opinions known, after being unable to communicate for so long, I was very excited to be able to be understood. Having mastered a set of skills they get to move forward with a new AAC devices. On the other side are negative emotions such as feeling overwhelmed when having to learn something completely new.

Negative Emotions

Learning how to use AAC has been compared to learning a new language and can be overwhelming. Other negative emotions that can be evoked from using AAC include: frustration, anger, nervousness, and helplessness.

Frustration and anger often correlate with each other. Both emotions, may emerge when AAC users face people’s ignorance, and prejudices or ableism. I’ve run into people who were not intentionally prejudice, but their actions were, like touching and taking away a user’s device without permission.

Again, speaking from my experiences, and other AAC users I’ve talked with, AAC users can become frustrated and angry if the AAC user does not have an effective communication partner; someone who does not follow etiquitte rules for interacting with AAC users. These rules include, “Be patient and wait…Respect how much time and effort it takes to use AAC…Manage noise, etc.”, (Patient-Provider Communication Network)

“AAC users, especially those who also have other physical and cognitive disabilities, may express emotion differently. Differences in, or the absence of facial expressions, gestures, and vocalizations may make it difficult convey different feelings and for communication partners to accurately identify an emotion. As a result, AAC users may find it difficult to fully express themselves, leading to feelings of frustration, isolation, and anxiety.”, (Using AAC to Talk About How You Feel, 2022). Such communication breakdowns can cause feelings of frustration and anger for both the AAC user and the communication partner 

From my own experiences, the feeling of nervousness is dependent on several factors. First, environment plays a large role. How many communication partners are there? Is it crowded with strangers? I know I get flustered when people are waiting for my response, and it takes time to input a message into my ÁAC. Finally, how familiar is the AAC user with the place they are in, and the communication partners present?

 When I do not have access to my AAC, I feel helpless. A good example, is when a doctor moved the table with my AAC on it to “make room”. Then, this doctor proceeded to ask me questions. I thought, “really!?” 

Implications for AAC Therapy & Treatment Plans

I have several suggestions of how considerations of AAC users’ emotions can be incorporated into therapy plans. First, negative emotions will happen. It is important to teach clients how to cope with them when they occur. Another way is identifying their triggers for positive and negative emotions. Third, situations such as doctor appointments or other events such as a family vacations can be rehearsed, and prepared for. I’ve seen this done with clients who have autism. It is my opinion that it is very important to teach clients how to respond when they are faced with people’s prejudices such as ableism, and people’s ignorance. Also, information about AAC and how to interact with AAC users needs to be disseminated in order to normalize AAC.

Conclusions

In conclusion, in order for successful implementation of AAC, therapy clients’ emotions need to be considered when creating and establishing a treatment plan. Also, making such considerations can provide creators & designers with information they are able to utilize when making AAC devices. For example, the information may be applied to increase a device’s accessibility, or increase a device’s aesthetic. Ultimately, while writing this article, I discovered there are few journal articles and other forms of media covering this topic. More research is needed to thoroughly explore this subject.

References

Patient-Provider Communication Network. (n.d.). Communication Planning (Patient-Provider Communication Network). https://www.patientprovidercommunication.org/tools-and-resources/communication-planning/

Using AAC to Talk About How You Feel. (2022, May 29). /thinksmartbox.com/. Retrieved May 29, 2023, from https://thinksmartbox.com/news/resources/using-aac-to-talk-about-how-you-feel/#:~:text=As%20a%20result%2C%20AAC%20users

About the Author

Meggin Nunamaker

Meggin Nunamaker has a bachelor’s degree and master’s degree in Communication Disorders from Murray State & Western Kentucky Universities. She has a congenital muscle myopathy that is progressive (described as similar to muscular dystrophy). She now has a tracheostomy (since 2012) and lives in a hospital on a ventilator (since 2013). She has been using AAC for about two or three years. After much trial & error, she finds that using a built-in function of an on-screen keyboard to “type” messages by clicking letters works best for her. She also uses a free text to speech app that she downloaded on her laptop from the Microsoft store. She was inducted into the vast world of AAC when she joined Patient Provider Communication network, and became a registered speaker for the United States Society of AAC. She’s written and published two books. This first book, A New Beginning, chronicles what it is like to live with a tracheostomy. The second book, Real Life is too Funny to Make Up (publication in process), contains funny and heartfelt stories from her life.