I’m hard of hearing. I have been since I was four years old. I don’t remember much about actually losing my hearing, other than asking my mom, in a very worried voice, if I would still be able to watch Sesame Street (spoiler alert: Yes, thanks to closed captioning). I’m thirty-some years into this hard of hearing gig, and it’s really the only life I know. It’s my normal.
I use my hands along with my vocal cords to communicate. I lip read, but not every situation or person is conducive to lipreading. In public spaces, a lack of sign language interpreters and live captioning isolates me and people like me and makes things like getting jobs or receiving medical care more complicated. We aren’t always granted the luxury of clear and easy communication with the people around us.
The establishment of the Americans with Disabilities Act helps. This Act prohibits discrimination based on disability, and requires certain settings to provide certain accommodations. So I’m protected and included (to a degree) when I’m out in public. But being at church is a different story. Exempt from the ADA, the church’s exclusion of people with disabilities is not direct abuse—like so many allegations coming to light these days—but abuse’s partner in crime: neglect.
A Few of My Stories
A few years ago, I was part of church-founded Bible study with about twenty other women. We sat around some pushed-together tables and every week, different women took turns leading the study. One evening, the assigned teacher paired us up to work on a small task together. She went around the circle, pairing up women sitting next to each other. When she got to me, she gave me a solo task then continued pairing everyone else up. She gave no explanation. I was the only one designed to work on her own—with no idea why. The same thing happened a couple of weeks later, but with a different teacher.
In another church, the leadership seemed open to increasing accessibility for people with hearing loss, but when I approached them with specific ideas—such as creating transcripts for sermons to post online alongside the audio—my requests were almost immediately met with, “The problem with that is . . .” which cast me as the problem rather than a co-laborer in finding a solution.
Last year, I went back and forth with a large parachurch ministry, asking them to caption more of their online content (which they did), and to provide live captioning along with the planned American Sign Language (ASL) interpreters for their large conference (which they did not). In the meantime, I was facing similar discouragement in my local church. Churches and parachurches would help only until it was inconvenient for them to do so.
I added these things to my growing pile of baggage—some of which I’d been lugging around for years—labeled “marginalization” and “church hurt.”
It’s my fault?
When I talked to people about these issues, most of them thought my experiences were just misunderstandings. Time after time I heard, “I’m sure if you explained your hearing loss to them more, you could have avoided that in the first place. Besides, people misunderstand me sometimes, too. It’s just part of life.”
I told myself that for years. If I was left out, it was probably my fault for not advocating for myself. If I missed information, I should have asked for clarification. But these incidents as I described above happened with too much frequency to be mere coincidence, and I heard similar stories from my Deaf and hard of hearing friends—many who are better advocates than I am.
So I began to write about it. I started a blog. I had hard and awkward conversations about access with college and university access coordinators, with professors, with co-workers. I cried to friends and family. I used to think that if I wrote enough about what it meant to me to be hard of hearing, if I employed poetic language to evoke empathy in my (mostly hearing) readers, then maybe the Lord would use that to compel people to work harder to include me and others like me.
Then the 2016 election happened. A large majority of white evangelicals chose as our country’s leader a person who, among other horrors, openly and publicly mocked a person with a disability. I was crushed. If my church folk were okay with someone who made light of disability, what must they think of me? How little must they think of me?
What I once might have brushed off as ignorance by my fellow church people, I now recognize as active marginalization—whether intentional or not. And it’s gone so far as to affect my own relationship with the Lord. When his own people marganalize us , the leap from “God’s people don’t want me” to “does God even want me?” is an easy one.
All it takes is a person who listens.
Soul weary, I started dragging myself to another women’s Bible study. In this one, we would break into smaller groups for discussion and prayer and mutual encouragement—we stayed in the same groups all semester—then everyone came together as a large group for teaching time. Even though we were following a study by a well-known Christian author, different women in the church would take turns teaching when we were all gathered together. Once in a while, we would skip the large group teaching time and stay with our smaller groups to listen to the audio of the teaching for that day’s section.
I kept reminding myself to talk to our women’s ministry director, who was also a good friend, about the alternative plan. If I knew the dates when we would listen to the audio, then I could simply plan to not go to Bible study those days. But I kept putting the conversation off and one day I came to Bible study only to find we would be listening to the audio in our groups.
I froze. I was already there and felt awkward just leaving after settling myself at our table. Now what?
But my friend had already thought this through. She was in my group, and without me having to ask, she transcribed the audio herself, and read it out loud instead of having our small group listen to the audio. I was grateful, but also worried she had done too much, that she would be too weary to help the next time I needed it. “Thank you,” I told her. “But I truly would have been fine if we listened to the audio and I had the transcript in front of me, so I could read and follow along.”
What she said next blessed me to my core: “But this way we all experience it the same way.”
How did she know what to do? It was simple. She spent a couple of years before that listening to and empathizing with me and learning what my hearing loss meant for me on a practical level.
She risked asking awkward questions and looked for ways to serve. Our small-group leader was cut from the same cloth and also became a friend. Right from the beginning, we were talking about where I would sit—“I will always save a place for you next to me,” she said—and she set the example of having women in our group speak one at a time so I could keep up. She did not make a big deal out of it or even draw a lot of attention to me in the process. She set a dynamic that was inclusive without making me feel like the Other. My friends—my sisters—clothed me with dignity. And all it took was a little care.
Cover photo by Hayes Potter.
Sign Up Today
You don’t have to miss anything. We send out weekly notifications when we publish a new issue. We like you—so we won’t sell your info to Google or the NSA or even advertisers, they probably already have it anyway.