Listening Better, Together

One Spring evening earlier this year, my girlfriend Sylvie and I were running on the track at Stanford University, where we both work. After our cool-down stretch, we were talking about something inconsequential, when she asked me if I could repeat what I had just said.

This happens fairly often as Sylvie has moderate hearing loss, and has worn hearing aids since she was seven years old. Since her hearing aids unfortunately aren’t water-proof, she isn’t able to exercise with them on.

Sylvie and I have talked about her hearing loss from time to time, but I generally don’t bring it up because I frankly rarely notice, and because I don’t want to make her feel uncomfortable. For some reason, I decided to ask her more about her hearing loss this time around. We talked about the extent of her hearing loss, and, specifically, how she can’t hear higher frequency sounds.

This blew my mind. I had incorrectly assumed that hearing loss was a purely volume issue.

In my curiosity, I quickly pulled out my iPhone, opened up Spotify, and connected my phone to my car’s sound system. I picked out one of my favorite musical compositions of all time, Milano by Sigur Ros.

The Icelandic post-rock band’s atmospheric and uplifting progressions honestly bring tears to my eyes, and serve as a wonderful soundtrack in the moments when I’m trying to slow down, take a deep breath, and completely take in the world around me.

(My relationship and emotional connection with music is quite intense; a few years ago, I created an online community for individuals to anonymously share their most vulnerable moments, through the lens of music.)

I cranked up the volume in my car, and pressed play. The soft, creeping strings slowly swept through the car, accompanied by an ever-distant, uplifting progression of higher octave piano keys. To my dismay, Sylvie couldn’t pick up these sounds, even though the volume knob was turned up. I tried to sing along a bit at a lower octave, so that she could pick up the piano melody. In this moment, I caught the tiniest, fleeting glimpse into my girlfriend’s world. l wanted to say something, but there was a lump in my throat.

Several months later, I was quietly listening in the audience at Stanford Medicine X, an incredible annual convening of academics, technologists, designers, students, and patients. I have been at Medicine X for a few years now as a Design and Program Associate, which involves a nice combination of design thinking, health services research, workshop facilitation, media production, and community organizing.

Specifically, I was listening in on the session titled “Health Care’s Digital Futures”, with Dana Lewis and Bodo Hoenen. As a Type-1 diabetic, Dana designed and built her own artificial pancreas, and made her software open source. Bodo built an assistive robotic arm for his recently paralyzed daughter, and displayed the custom 3D printed brace for us to see. The technology for their respective inventions was impressive, but I was particularly moved by their tenacity, grit, and curiosity.

Bodo Hoenen and his daughter, Lorelei. Photo by Justin Lai, Stanford Medicine X

Something clicked in my mind at this moment, as I thought back to Sylvie’s hearing aids; the $5,000, uncomfortable, tinny, and muffled hearing aids. Why couldn’t patients like Sylvie work together to build a low-cost, customizable, and higher quality alternative? I quickly jotted down some notes on my phone, and since then, I’ve been talking to anyone who is willing to listen.

In design school, I learned that the answer lies in the question. At Stanford Medicine X, I learned from our friends at IDEO that these questions take the form of How Might We statements; short, succinct, and optimistic inquiries that beg to challenge the status quo. Although it’s tempting to think about low-cost, customizable, and higher quality hearing aids, I’ve learned as a health care designer that the most meaningful products, experiences, and tools present themselves only after we’ve learned to ask the right questions.

The first step to truly meaningful innovation for the hard of hearing community comes with listening, observing, and sharing. We welcome you to join our group of patients, technologists, providers, and designers at the Hearing Accessibility Project, where we will start by asking a few of these questions:

How Might We reimagine the hearing aid and audiology examination experience?

How Might We understand the social, emotional, physical, and financial obstacles that HoH individuals have to face on a daily basis?

How Might We create a platform and community for hearing and HoH individuals to learn from each other?

How Might We combat ableism as we genuinely celebrate our differences?

At the Hearing Accessibility Project, we’ll be publishing blog posts each week exploring the various issues pertaining to hearing accessibility. Topics will include, but are not limited to, the hearing aid ecosystem, patient experience, and social barriers associated with hearing loss.

Join our community on Slack and Twitter. Share this post with your friends and family. Drop us a line here if you’d like to share your story. We’re here to listen.