I’m Not Deaf, But My Hearing Loss Can Be Isolating
It’s a strange thing to find yourself caught between two groups, neither of which you truly belong to. I am nearly deaf in my right ear, due in part to a cholesteatoma removal surgery at the age of 12.* I’m lucky enough to have about 60% of my hearing remaining in my left ear. After close to a dozen ear surgeries, hearing aids proved to be the best long-term solution for me; I’ve worn them since I was 14.
When I’m home alone, sometimes I leave my hearing aids out, choosing to use earbuds for music at my desk or closed captioning on Netflix. I use headphones when talking to my family because I can adjust the volume higher than I can on my phone alone, though I do worry about whether this might cause further hearing damage. I consume media and audio with greed, as if to prepare for future hearing loss. While I am not Deaf, I have never been a fully hearing person, either.
I’ve done almost all I can to avoid letting my hearing loss define me. I don’t mind talking about it with friends, but rarely bring it up if I can avoid doing so, especially with new people. The last person I dated was unaware of my hearing aids for the first month of our relationship — my long curly hair nearly always covers them.
Yet being hard of hearing is still a part of my identity, and always has been. There are times when I am unable to help feeling left out — not just in conversation, but in community.
The fact is, I just don’t know anyone else like me.
As a person who still has some of her hearing, I know my hearing loss has not impacted my life in the ways experienced by many Deaf people. For the most part, I live a typical, unhindered life. I have never lost a job opportunity or a relationship because of my hearing loss, nor has my education been severely affected, despite growing up in a rural community and school district with limited resources for the hearing-impaired. Not everyone is so fortunate. People who are Deaf are routinely passed over for job opportunities, and their education and relationships can suffer due to lack of understanding and cultural disenfranchisement. In more extreme cases, their lives can be in jeopardy.
“The unemployment rate for d/Deaf and HOH (hard of hearing) people is so high,” says Rikki Poynter, a Deaf YouTube vlogger who is committed to getting YouTube users to caption their videos through her campaign, #LightsCameraCaption. (Watch for Poynter’s #NoMoreCraptions campaign during Deaf Awareness Month in September.) “After many years of applying for jobs, even the smallest anybody-can-do-it jobs, I gave up on it and started my own business. I started getting more serious about YouTube and added public speaking to the mix. That worked out well because now that means getting more hearing people educated so that, in the future, Deaf children . . . will hopefully not run into the problems a lot of us have been having for years.”
Poynter is deeply concerned about the obstacles many Deaf children face. “Deaf schools and programs have been closing,” she explains. “Lots of mainstream schools don’t have the proper accessibility, the right tools, or any tools at all . . . for Deaf students. No captions in film, no FM systems. Even the teachers have little to no training on how to properly teach Deaf children.”
Poynter notes that Deaf people often see their personal relationships suffer as well. “I have lots of friends who aren’t close to their family because of the barriers,” she says. “It’s not even just a disconnect. Some of these families will put down their kid because they’re not understanding their verbal requests and stories. But that’s an issue that many of us are hoping to work on for the current and future generation[s].”
While Poynter is a part of the Deaf community, she sees how it can feel exclusive at times. “[Those in the Deaf community often] grew up being deaf or hard of hearing, with sign language, in a Deaf family, etc.,” says Poynter. “I grew up in an oral and 50% hearing household. I didn’t have access to sign language growing up. Of course, you will find what you will call ‘extremists,’ which occurs in every group. Not everybody in the Deaf community will be as accepting if you didn’t grow up in the Deaf community or are not fluent in sign language. I would get a lot of flack in the beginning of my journey because I wasn’t fluent enough in ASL.” Still, for Poynter, the benefits of community far outweigh these few instances. She explains that the Deaf community is a tight-knit one. “They’re my people. I grew up surrounded by hearing people [who] never understand who I was or what I had to go through on a regular basis. I’m still surrounded by hearing people most of the time and it is absolutely exhausting . . . So it’s nice that, after years of feeling alone, these people in this community know what I’ve gone through.”
As a hearing-born person, even one with profoundly compromised hearing, I have always been interested in Deaf culture. But I also recognize that I am not part of it. I’m not part of the hearing world, either — and occupying this lonely middle ground can be a challenge. People without hearing problems can’t fully understand what my day-to-day life is like.
In addition to being born with hearing loss, I have problems with the eustachian tube in my left (and better-hearing) ear. This issue frequently causes drainage or fluid imbalance in my inner ear, resulting in even worse hearing. While it can and does resolve on its own, I never know how long that will take, and it can be frustrating to wait. It’s always tempting to simply shut myself away for a few days until the hearing I do have is restored. At times my hearing aids fail, and again I find myself wanting to avoid social situations until they’re fixed. Retreating often seems so easy — certainly easier than explaining my situation or asking my friends and colleagues to repeat themselves over and over.
Sometimes I scroll through posts on WebMD, searching for accounts by other people who experience the same small but still challenging things I do — other people who constantly have to remind others they don’t hear well, or ask strangers to let them sit where they need to in order to hear in noisy restaurants; other people who receive the same questions all the time and have workshopped jokes over the years to make others feel less uncomfortable; other people who are at the mercy of their inner ears, who never know when they might experience even greater hearing loss. I’ve never found a large number of people like me. I suppose I’ve never been clear on what the magical Google search terms would be.
I began taking ASL classes a few years ago. Most of my fellow students were hearing, hoping to learn how to communicate with someone they knew who was Deaf. A handful of Deaf people were present. And then there was me. Our instructor paused during introductions to teach me the sign for “hard of hearing.” I felt a wave of embarrassment and wondered if, at 27, I was too old to be learning all of this anyway.
When I do choose to tell new people about my hearing loss, a common reaction for them is to tell me they don’t hear well, either. I understand this statement might come from a genuine desire to relate and connect, and is therefore an understandable response — but to me, ultimately, it’s an unhelpful one. The best thing a person can do when I ask that they walk on my left side so I can hear them better is to simply say, “Yes, of course,” and then move on in our conversation.
It’s a rare occurrence, but whenever I do see someone around my age wearing hearing aids, my stomach does a little excited flip of recognition. In that moment I always feel a strong sense of kinship, even if we are complete strangers. I might not even get a chance to speak with them, but I always think to myself, We’re alike. We share the space in the middle.
* A note on the use of “Deaf” versus “deaf” in this article: “Deaf” refers to those who identify as part of the Deaf culture. I use the lowercase “deaf” once in this piece to describe a nearly complete loss of hearing in one ear; in that instance, I am not identifying as Deaf.