It’s Been a Week of Voices and Progress

Dagmar Munn avatar

by Dagmar Munn |

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This past week was filled with voices. No, I wasn’t hearing voices in my head. But everything seemed to involve a voice. Let me explain.

An action hero uses his voice

I watched the newly released documentary “Val,” currently streaming on Amazon Prime Video. By the time the final credits were rolling, I knew I had to add actor Val Kilmer to my “ALS inspiration” folder.

In the film, Kilmer not only shares his personal video collection of behind-the-scenes footage from his days as a 1980s Hollywood heartthrob, but he also shares glimpses of his life today.

Sure, I enjoyed the trip down movie memory lane. But what really held my attention was Kilmer’s courage and openness to speak with the voice he lives with today.

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His recent throat cancer required a tracheostomy, which forces him to communicate by placing a finger over an open hole in his throat. He has dysarthria. I recognized the gravelly sound, the breathy pace, and the monotone enunciation. My own dysarthria makes me sound much the same.

Throughout the film, I felt a kinship with Kilmer’s courage to accept the change caused by his medical challenges. To me, this was a perfect example of my ALS coping strategy of “Adapt, Learn, Survive.”

If you are experiencing any ALS-related voice issues, I recommend watching “Val.” It just may inspire you as well.

An interview to voice my opinion

Also last week, I opened an email from a reporter at a major media outlet explaining that she was writing an article about the inaccessibility of voice assistants and the efforts companies are making now to fix the problem. She finished her email with, “I’d love to include your voice in my piece.”

It made me chuckle. My voice? Really?

But seriously, I jumped at the offer. Readers of this column will know that one of my quests has been to improve how voice-activated devices fail to respond to voices like mine. I want to stop having to rely on the humorous yet demeaning workaround of using the Text to Speech app on my cellphone to direct one automated voice to “speak” to another.

Her questions included asking about the problems I’ve had with voice assistants, the types of voice studies I participate in, and what is involved with providing my voice samples. She finished with, “What do you think are the consequences or impact of companies not making their voice technology accessible for people with speech disabilities?”

I answered that companies should be all-inclusive and respond to their customers’ needs. Plus, I would like to be able to use the devices just like those with normal speech. I want to be recognized for my value as a consumer.

The reporter has assured me her article will be published soon, and when it is, I’ll be sure to share it with you.

Finding a common language

A few months ago, I was contacted by a PhD student in the U.K., who was proposing a unique approach to improving the interaction between people with dysarthria and the latest voice technologies.

Her focus is not on teaching devices how to understand me better or having me improve my speech. Rather, it’s finding a common language of sounds.

So, this week the study moved into its next phase of online voice recordings.

Here’s where it gets interesting. I had to record a list of random sounds like, “ma-ah,” “ar-ee-ya,” and “ing-ing.” These sounds will eventually be used as specific commands for a device. I’m excited about the potential, especially because this will help people with severe speech impairments communicate with voice-activated devices.

Let’s voice our thoughts and help each other learn how to live well while living with ALS.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.


Dave Smiglewski avatar

Dave Smiglewski

Thank you for sharing this info. My ALS has been focused mostly on voice disfunction so far and the dysarthria has left me unable to effectively do voice commands or use voice activated devices. I mention this speech problem from time to time in my weekly local newspaper column and often have to mention it (how ironic!) during our city council meetings (I am the mayor of my community) which are carried on our local public access cable TV channel. However it is always an issue so hearing or reading about new developments in voice or speech aids are most welcome and a day brightener. I always look forward to your weekly column. You are an inspiration to the ALS community!

Dagmar Munn avatar

Dagmar Munn

Thank you for your kind words about my column, Dave!
Know that you are not alone in the challenges of having AI understand our ALS-affected voices. Kudos to you for forging ahead at city council meetings that are broadcast on TV.
Pretty soon we'll be able to find common ground with our AI devices!

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