To listen to an audio version of this column, click here.
This is a 2-3 minute audio letter to the late David Muir, a disabled man who invented the Passy Muir® Valve, an attachment that enables people with tracheostomies to speak. As a newly nonspeaking person, this letter allows me to share my thoughts on the desire to speak and reflections on silence.
Dear David,
You don’t know me, and I only learned of you recently. Your type of muscular dystrophy was different than mine, but we both had medical crises that left us with a tracheostomy and the inability to speak. This happened to you in 1984; to me in 2022. I wonder what it was like for you at the hospital…. Was it as traumatic, scary, and frustrating for you as it was for me?
[Sound of an EKG]
During my four weeks in the intensive care unit, while I was grappling with the idea of life without being able to speak, I saw your face featured on a plastic package that contained the Passy Muir® Valve, a device you invented. When the device is attached to a ventilator tube, I learned, the valve enables a person to breathe through their trach, redirecting air up through the vocal cords and nasal passages so a person can speak.
A speech-language pathologist suggested I try it. When she deflated my cuff, a balloon inside the trach — which, I also learned, must be deflated in order to use your device — and attached the valve, I immediately struggled. I was still healing and adjusting.
[Sound of air being released as the cuff in my trach is deflated]
I tried to speak, but no sound came out except for air flapping through the valve and secretions from my wound site. But I kept the valve for months, as I slowly recovered. Your life had piqued my curiosity.
A Google search brought up the company you cofounded with Patricia Passy, including your origin story for the valve. I was thrilled to see that a disabled inventor had created something based on the need and desire to speak. Why hadn't I known about your achievements? Why aren’t you mentioned in disability history or stories about disabled people in design and technology?
A passage from your company’s website states: “We at Passy Muir believe that communication… is essential to individual rights and dignity. We are committed in our efforts to offer tracheostomized and ventilator-dependent patients a step towards independence and dignity through speech.”
I paused to consider the phrase “dignity through speech.” There is dignity in silence too. Silence does not mean a person is voiceless, as there are millions of nonspeaking people who use gestures, sign language, writing, technology, and other means to communicate with the world.
I live in a world of silence that is not lesser or devoid of richness. My reality is just different. Silence forces me to be more thoughtful and intentional in considering what I want to say and how I say it when I type into my speech-to-text app, which listeners to this letter are hearing now.
[Musical interlude]
Still, almost a year after I was hospitalized, I tried using your valve a second time, at the ALS center at the University of California San Francisco. Nazim, the respiratory therapist, and Patricia, the speech language pathologist, evaluated me as they attached the valve to my trach once again.
[Sound of Nazim attaching the valve, a series of whooshes, then Patricia comments]
I tried to speak, hum, and make noise but couldn’t do it, probably because my diaphragm wasn’t strong enough to push air up through the valve. But I tried my best, David, and hoped I could have vocalized even a little bit.
Even if I could have used your valve, though, I knew my voice would never be the same. It seems there’s nothing else I can do but live with this new reality of mine. I was born disabled, but my disability identity has changed radically. I’m now part of the community of nonspeaking people and people who cannot swallow or eat solids. It’s another part of the ever-expanding disabled multiverse within which I leapfrog back and forth.
As part of my evolution, I have become an advisory council member for Communication First, the only nonprofit dedicated to protecting and advancing the civil rights of people who cannot rely on speech to be heard and understood. I’m sad that your Passy Muir*®* Valve didn’t work for me, but I am grateful for it and organizations like Communication First.
The worlds of speech and silence intersect and overlap. Silence isn’t static or limiting. Silence is not an empty void. Silence has a landscape of its own. Silence has its own dimension, a space that enables another way of thinking and being. There is dignity in all forms of communicating.
[Musical interlude]
When I looked you up, David, I read your obituary in the Los Angeles Times, which said you died at age 28, which was 33 years ago. You lapsed into a coma after your trach became disconnected when you fell out of your wheelchair — one of my greatest nightmares.
I wish you were still here to see how diverse the disability community has grown. Would your thoughts on speech have evolved over time? I wonder what kind of conversations we would have had as fellow trach users and how we would chat — text, email, voice? Who knows? Maybe we would have become friends.
You created something that offers people like me an option, and even though that option is not ideal for me, I thank you for it. Breathe easy, David Muir, and rest in peace.
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