Now Hear This: On Hearing Loss and Charting My Own Course

I. Stop Me If You Heard This One…

A few weeks ago, I was home alone, getting ready for work when I heard a male voice: “Battery.”

I stopped what I was doing and listened again.

“Battery.”

OH SHIT! SOMEBODY IN HERE!

I armed myself and stood behind my bedroom door waiting, ready to blast whoever was in my home whispering about some damn batteries.

I stood there strapped and panicked for about 3 minutes before realizing that it was my hearing aid and I should probably put my piece away.

My current hearing aid is about 2 years old and I usually change the battery every other Friday, so I had forgotten that if I don’t change the battery, a digital male voice will whisper ‘battery’ at intervals getting slightly louder the longer I go without changing it.

Hearing aid technology is advancing at a rate much like that of smartphones and computers.  Today’s hearing aids are computers and can do any number of things for the wearer, including streaming music with Bluetooth. The industry has adapted beyond the rudimentary understanding of hearing loss to consider the needs and experiences of the whole person.

Sadly, the people around us haven’t adapted as quickly.

II. I Saw The Sign…And I Didn’t Give a Fuck.

I don’t sign fluently; I’ve learned some American Sign Language (ASL) from light immersion. ASL was an available option to meet my language requirement in college, but I chose three semesters of Spanish. I took a couple free community classes offered by the state’s School For The Deaf, so I know enough to understand a very slow-signing person.
But I choose to use my voice and speak when conversing. Not everyone who loses some hearing wants to sign – or even knows how, especially if they are late-deafened.  This doesn’t stop overzealous hearing people from showing off their ASL like a parlor trick and expecting me to clap for them.

Today, I was approached by someone who knows and understands that I have a hearing loss. This is basically all that she knows about me. Prior to today we had only exchanged polite hellos. So I was baffled when she tapped me on the shoulder to say she that had something to show me.  She took a deep breath and in halting ASL signed “YOU.” Then with a pained look, she asked me if I know the ASL sign for “light”.

Oh God, I know where this is going.

I fibbed and told her that I don’t know the sign for “light” or any ASL, but she ignored me and faltered on, so determined to finish her performance that she made up her own sign.

“Wow.  But… um, I. don’t. know. sign language,” I repeated.

She persisted, thrilled with herself, while I, her audience, faded into her periphery.

Looking through me with wild eyes, she signed “MY” with much more confidence. And then finally, with a great flourish, she brought it all home by signing “life.”

YOU … “LIGHT” … MY … LIFE.

She blinked at me, waiting; but I had no words for her rude, wobbly-signed version of Beyoncé as Sasha Fierce covering a disco-era Debby Boone song. So I turned and walked away so as not to give her hope to carry on.

III. …Listening To All the Things You Can’t Hear.

I need people to understand that as a late-deafened and Hard-of-Hearing (HOH) person, I don’t feel disabled. I don’t feel “hearing impaired” (an outdated descriptor, which is now considered derogatory by some). Rather, I am differently-abled. This is not to say that I discourage other people’s owning a disability. But for me, I feel empowered when I do less to dis- my ability.

My hearing loss is sensorineural, bilateral, and congenital.

That is, it is nerve based, in both ears, and has been present since birth. My late maternal grandfather, mother, brother, maternal aunt, cousin, and a cousin’s son all have hearing losses.

As a kid, I had frequent ear infections.  In the summer they’d be worse because I was an avid swimmer, in the pool almost all of every day, and the water would get down into my ears and not come out.  I was born with a hearing loss, though – it’s hereditary on my mom’s side – but it did not start to affect me until around age 6.  By then, my older brother had been wearing a hearing aid for around three years. I got my first hearing aid at 7, after one particularly nasty ear infection that included a battery of tests to determine exactly how much hearing I had.

I had been having a hard time catching what was being said at school and my second grade teacher recommended that the school special resources educator start to work with me. The odd thing about this is that nobody, not even my mother, ever said to me “You have a hearing loss.” It was treated as if I had simply cut my finger and that I’d be good as new after a little attention and a Band-Aid.  In this case, the Band-Aid was a hearing aid.

No one ever made me feel like there would be things I wouldn’t be able to accomplish because I was losing my hearing. I was mainstreamed in public schools, never in special education classes, and still expected to perform as I always had. There was mild teasing, but no all-out bullying about my hearing loss or wearing a hearing aid. My new hearing aids were just a part of who I was, like glasses for my ears, so I did not understand the magnitude of what was happening until my hearing started to get worse in junior high.

There were points in my youth when we’d start to notice that my hearing aid wasn’t serving me well enough, and I’d have to get more hearing tests and get fitted with a newer, more powerful one. Understanding speech in large rooms – like during school assemblies – started to become more difficult no matter how new my hearing aids were.

The best way to explain what I experience is to think of it as a comprehension loss as opposed to a hearing loss. For the most part, volume is fine. But because the auditory nerves in my inner ears that send sound messages to my brain don’t work as they should, speech arrives at my cerebral cortex garbled and unusable. I don’t always understand what’s being said the first time, and sometimes I have to sit with what I heard to let my brain take a couple seconds to unpack it and arrange it into comprehensible speech.  I depend heavily on lip-reading to help with understanding so I usually ask people not to mumble, cover their mouths while speaking to me, or speak while turned away from me.

IV. Look At Me When You Speak, Listen To Me When I Do.

Late-deafened and HOH people like me, who lose our hearing long after becoming verbal, can fall through the cracks of people’s fractured understandings of deafness. The hard-of-hearing are often seen as “not deaf enough” by the deaf community, while fully-hearing people expect more than we can actually give because we communicate, for the most part, in the same fashion as they do.

I get it. When the world teaches you that “deaf” means sign language and an inability to communicate verbally, my normal speech patterns, and rare-if-ever use of American Sign Language presents a confounding idea when juxtaposed against my obvious absence of hearing. But fuck what you heard (pun intended), you can’t assume anything about how I hear.

I want hearing people to understand there are levels of

ability within deafness, and that not everyone who has lost some hearing chooses to live as a completely deaf person.  I want other hard-of-hearing people to not feel like they have to assimilate to either community — deaf or hearing — and know that it’s okay to find balance between the two by borrowing from both for as long as needed.

 

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About AJ Bufford 1 Article

AJ is the project manager for all of Kinfolk Kollective’s community giving efforts. Reach her at aj@kinfolkkollective.com.