Friday, December 10, 2010

My personal experience living life silently

For the past four days, I have been completely silent - not even a peep. Trust me it is not by choice. I have laryngitis. By the order of the doctor, I am not allowed to talk or strain my voice. This is funny because even if I wanted to, nothing comes out! I am very lucky because unlike the thousands of individuals that end up with laryngitis, I have the tools to help me still communicate with others. With that, you would think that I could carry on with life with little interruption.

My experience has been very humbling and frustrating. As an AT person, I encounter hundreds of people that are not able to communicate using their voice for various reasons. My job is to help them communicate or access communication devices. Now as the person that needs a communication system, I am seeing the world in a completely new way. So many opportunities are lost because one cannot communicate effectively. Trying to find alternative ways to have individuals communicate with you is time consuming.

In the past four days, I have found that alternative communication makes my communication partners uncomfortable. From my side of the conversation, I found that people do not feel you are an equal partner in the communication. The conversations are far shorter. Even when I try to expand on what I am saying, I am told, “don’t worry I get it”. GRRRR, I do not care that you can get it, I was not finished talking. People look down at my device rather than my face. I even programmed one of the buttons to say, “Look at me not my device.” It seems people prefer to look at a computer screen rather than a person’s eyes.

I tried to use my communication device to answer a phone call related to an account issue. I preprogrammed a button explaining that I have no voice and that I am using a communication device as my voice. The representative said they could not talk to me because they were not sure whom they were talking to. I answered all the security questions but they still would not assist me because they were not sure whom they were talking with. I emailed the company to explain the situation their email back to me was: For further assistance with your account, please contact us at 866-XXX-XXXX between Sunday to Thursday 8 a.m. - 11 p.m. ET Friday to Saturday 8 a.m. - 5 p.m. ET, so that we may discuss what options are available on your account.” Seriously, I just wrote asking for an alternative way to communicate with you - your solution is having me call to talk to a representative. Did we not just establish that phone communication would not work? Therefore, around and around we go. They want me to give permission to someone else to talk for me. I refuse to do this since I have a way of communicating.

Even at the doctor’s office, I found the staff to be inconsiderate and impatient. The nurse was annoyed that she had to wait for my response. She said that she does not have all day. I was not asking you for the whole day - but a minute to type what I want to say would be nice. Just to annoy her a little more I typed slower. :0)
As a patient, I am paying for your time. I deserve to be treated with respect. I am silent because of a temporary condition, so when I get my voice back I will have a lovely conversation about I felt when I was trying to be an active communication partner. My doctor will get a copy of the communication bill of rights. I may send it to every company that I had the displeasure of working with during these five days.

Being non-verbal in a verbal world is scary and frustrating. I have been in the field of special needs for 24 years. I have been empathetic to my students, consumers and friends’ needs. However, you can never understand what an individual deals with until you walk in their shoes. I can say that I still do not completely understand because I can communicate in ways that others may not. I have access to manual writing; I can play charades, use gestures and facial expressions. I have the ability to sign which for the most part is not functional unless you have a communication partner that understands sign language. I have the ability to text message, write emails and well as instant message with individuals that have the tools. Still with all the ways that I can communicate, I am left feeling like an inconvenience.

The scary part of not being able to communicate verbally is that if something happens I have no way of calling for assistance. The other day my father fell outside. I heard a big bang and ran to check what it was. My father was lying on the ground and there was blood coming out of his hand and head. I could not ask the questions that I needed to know if he was OK. I could not tell him not to stand up. I do not typically panic when there is an injury. However, at that moment I was panicked because I had no way to communicate with him. My father is OK. Just a bad scrape on his head and a minor cut on his hand. Being on blood thinners caused much more blood than a typical. However, if I needed to call for assistance the best I would have been able to do is call 911 – push buttons on the phone – hang up, call back, and hang up again. The police department would have responded to see what is going on. I am honestly not thrilled with that as a solution it causes way too much panic and it is not an appropriate solution.

As I sit here typing this, I know I am blessed. Once I had a chance to calm down and think, I realized I could have texted my cousin who is the Chief of the Fire Department in the town and one of my friends is the police dispatcher so I could have gotten help if I was able to think in that moment of panic. However, when you are used to communicating in one method and you do not have that method you realize that you are vulnerable.

There is humor in me not being able to talk. My family says they have had a vacation from my chatter. However, they are already losing their patience with me. They are tired of reading notes, asking yes/no questions and playing charades. It is interesting to see that my family now thinks they need to talk louder and slower because I cannot speak. Just to confirm I have laryngitis. My hearing is still great. The ear tubes are fine. The vocal pipes are under maintenance.

I am finding that being non-verbal is extremely tiring. You have to plan the conversation out. You have to make sure your partner understands that this will be a slow process and you pray that they don’t deviate from your pre-programmed buttons because otherwise you have to type things out which will take even more time. For example, I wanted a vanilla milk shake. You would think that is easy request. Seriously, it took me 10 minutes to order a milk shake. Do you want that thick like a malt or thinner? Do you want a small, medium, large or extra large size? Do you want a drizzle of this flavoring or coloring. I am all for giving choices but all I want is a milk shake. I felt like I was in a Dr. Seuss book.

So the saga continues. I know I am having a difficult time with being non-verbal. The verbal world does not slow down just because I am slower in my communication method. I am stressed because I cannot complete the things that I should be able to do. I am irritated much quicker when people do not understand what I am saying even when I feel I was very clear in my expression. I feel isolated in ways. My fast wit and dry humor just does not read as well as it would be received verbally.

This experience has left me with many things to consider. It has renewed my passion to make sure that individuals have the right to communicate and are given respect. It has shown me that just because you have a voice output device does not mean communicating with others is less stressful. I actually found it more stressful because of the non-verbal communication or verbal communication given by my communication partner. It has helped me to experience the many ways my friends, consumers and students struggle with when they are trying to communicate with the verbal world. I have learned that language is fleeting. I have learned that although it is fleeting, the emotion is left there hanging.

I thought I had empathy prior to this experience but this experience has shown me that one’s feeling of empathy doesn’t even come close to understanding the frustration, sadness and the loss of self one feels when you cannot verbally communicate the way you used to. I know I will get my voice back once the laryngitis is gone. However, this experience will live with me forever.


  1. Outstanding article; thanks for sharing. I have forwarded this on to a couple of my contacts in the AT-director world....

  2. Well Written!
    I enjoyed reading it. It's good that you wrote of your experience.

    Ken from Texas...

  3. Excellent Article! Communication devices open doors for people--but only if others are willing to actually listen and pay attention....Society needs more education!

  4. Thanks Jeannette very well written and supports why I say that everyone on Trisha's team needs to experience what it is like. I keep saying that our team members need to sit through the IEP and not be able to use their voice but yet still get their thoughts and messages out clearly for the rest of us to understand. But I would take it one step further and say they could not use any other communication except at the same level that Trisha is capable of using. :-)

  5. great post.
    Have you seen an app for the Droid X that would allow it to be used as an AAC device?