WHO WE’LL BE AFTER THIS

I’m Hearing Impaired, and My Mask Taught Me to Ask for What I Need

Navigating life with deafness can feel impossible during the pandemic, but I’ve found a solution that can work for everyone

jennifer pastiloff
Forge
Published in
4 min readAug 11, 2020

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Photo: Kemal Yildirim/Getty Images

We all have something that we’re self-conscious about, and often, that no one else even notices. When that something is an invisible disability, the stakes are even higher. It’s crucial that we figure out a way to be honest about our needs.

Invisible disabilities like mine are challenging because most people have no idea we’re dealing with something until we communicate it to them. I’ve had long conversations about this with my friend Xian Horn, a disability activist who has cerebral palsy. She uses ski poles to walk around, so it’s obvious she has something going on, but usually, people aren’t exactly sure what. When I walk into a room, I’m more like someone who has an anxiety disorder, or certain types of autism, or a brain injury, or a genetic disorder. It’s not obvious that I’m going to need some extra support or different treatment.

For me, the need is reading lips, and the pandemic has made this something I can’t afford to be self-conscious about anymore. I make my living running retreats, guest speaking, and leading empowerment workshops; talking with and listening to people is my whole thing. To the many viewers of my Instagram videos, I seem to hear okay because my hearing aids stream sound right into my ears. But I’m deaf without my hearing aids and even with them, my hearing is meh. Though I’ve spent a lot of my life trying to avoid admitting I have hearing loss, in reality, reading lips is the way I have learned to get by in the world.

My friend’s six-year-old son is very confused by this. “Mommy, why does she read my lips? Are there words on them?” I wish there were words on lips, like a cartoon, because it would make life with hearing loss easier. But alas, there aren’t, and I simply have to focus very hard, and pay close attention to the way mouths form O’s and S’s.

There were decades of my life when I was filled with shame for being “broken.” I was afraid if I said it out loud — I can’t hear — that it would make it true. As if my…

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jennifer pastiloff
Forge
Writer for

Best-selling author of On Being Human. Writer, public speaker, retreat leader, mom.