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

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 words were that powerful. As if I was some kind of magician that could cause deafness to come to fruition by acknowledging it and conversely could avoid it by denying it. For the most part, I’ve gotten by without people even realizing I need to read their lips.

Then came the masks. For me, a mask makes human speech sound like a hand pressing into a mouth. Underwater garble. Charlie Brown’s teachers. Sometimes I hear nothing.

I wear a mask, and I want everyone I encounter to wear one too. And yet this is a really scary time for me to be out in the world trying to communicate with all the mask-wearers. It plays on my worst fears and insecurities.

I’ve been hiding for the last couple of months so I didn’t have to deal with the mask situation. I’ve sent my husband to the store/errands. I feel overwhelmed by trying to function in a masked world. Even when I tell people I don’t know what they were saying, they keep nodding and talking through the mask.

Not being able to communicate is stressful and exhausting and awkward. I just want to go home and hide. But I can’t. And I won’t anymore.

On the most practical level: I got a mask that says, I read lips, Be kind. I have a clear mask not because I need it but because I want everyone to get used to seeing them. I want to normalize clear masks because I am positive there are more of us out there than we are letting on.

But I know that I have more work to do too. We all do. When I’m in rooms with people again, I’m going to walk in and announce, “Hello! I am deaf and I need to see your mouth to read your lips,” it will serve me better than if I wait until I am crying with frustration for not being able to understand.

Is it going to feel awkward? Sometimes. But being a human being is awkward. I know that I need to lead with the thing that I used to be ashamed of.

Each of us — disability or not — needs to communicate clearly what we need to feel safe, heard, seen, or accommodated. This often requires a level of vulnerability and energy that’s hard to muster. But if we let go of the shame surrounding our needs, if we simply state what it is we are dealing with without attaching a story of unworthiness to it, this will all become easier.

Every one of us should tell the world who we are and what we need to hear and be heard, disability or not. No one is broken. With any luck, what we’ll retain from this pandemic is some extra awareness of the invisible struggles of the people around us.

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

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