I’ve called myself, and this blog, “DeafMedievalist”. It’s the best description I can make of who I am, of how I think of myself, but it requires an explanation.
I want to make it very clear that I am NOT “Deaf” with a capital D. That designation belongs to those people who are part of Deaf culture and the Deaf community, usually people who sign as their primary form of communication.
I am also not just “hard of hearing” (a term I hate – it has such geriatric connotations!); I prefer to describe myself a “hearing impaired” – it’s clunky and hard-to-pronounce-quickly, but at least it’s better than HoH! “Hearing impaired” has its own drawbacks, however, as it sounds so mild – “oh, my hearing is just impaired” – and so fixable. “Impaired” seems to imply that there is a “repair” for it. At this stage, my hearing is very far beyond the and mild-to-moderate “impairment”. That means that when a stranger tries to speak to me, I usually say “almost-deaf”. It’s the quickest and least-cumbersome way to express my limited abilities. But when I have to explain my communication needs to people I interact with on a regular basis – at church, meeting people socially, to professors and to students – the explanation seems dishonest. After all, in many ways I still think of myself as a “hearing” person, because nine years hasn’t been long enough to erase all my memories of my hearing life. Saying I’m “almost deaf” seems like resigning myself to my fate, and accepting my second-class status in the hearing world.
I just wish I could print off copies of this explanation and hand it out to people in order to forestall the emotionally fraught process of describing my unique hearing experience!
I’m congenitally deaf in my left ear. Total, complete, absolute hearing loss. Even the bone-conduction tests can’t register anything; that ear is about as useful for hearing as a foot. I’ve never been able to hear out of it, and as result, I’ve never had any clue about things like sound directionality. I don’t get why people are obsessed with surround-sound and stereo-sound entertainment – I can’t conceive of the world in that way. I never have. I’m often amused by people who tell me they “know about” hearing loss from experience since they have one ear that is “better” than the other. Maybe having two ears make the difference between good hearing and mild hearing loss very apparent; I wouldn’t know.
Frankly, I’d kill to go back and have just one deaf ear.
I had excellent hearing in my right ear until I was 23. Even with only one ear, I didn’t think of myself as hearing impaired; it was a personal quirk, like a birthmark or a loathing for bananas. (Not me, I love bananas – but I have a good friend who despises them for some unknown reason.) Two months after I got married, all that changed. I literally woke up one morning and couldn’t hear. Panic, naturally, set in – we found an ENT (since we were new to the city and hadn’t established doctor relationships yet), and he started me on steroid treatments to try to reverse the sensorineural hearing loss. The intra-tympanic injections (surprisingly painful – ear drums aren’t really meant to have needles shoved through them!) and the oral steroids worked for about three months. My hearing was stabilizing somewhere near the “normal” range.
– it crashed. No reason, no trauma to the ear, it just stopped working. I was hospitalized for several days to try IV steroids, still trying to save my only hearing ear. That didn’t work (obviously)….and thus began my struggle to re-identify myself as Hearing Impaired, to adjust to life with a hearing aid, to start processing the devastating reality that nothing would ever be the same, and that the wearying, uphill battle to communicate would never end.
For anyone unfamiliar with how hearing is measured, here’s the standard audiogram graph:
This graph shows how hearing is classified: the minimum decibel that can be heard in a hearing test at each frequency is plotted, and the severity of the loss is described by the identifying labels in each progressively louder band. My left ear is described as “Profound” hearing loss; my right ear has a stable straight-line hearing loss in the “Severe” category, with the softest sounds I can hear at 75-80 dB across the board. Keep in mind that the dB scale is logarithmic; it’s not measured in percentages, and there no such thing as “100%” hearing. An 80 dB loss isn’t an “80%” hearing loss – especially for me, when you factor in loss in BOTH ears – and it isn’t a mere ten degrees “worse” than a 70 dB hearing loss.
The kind of “sudden sensorineural hearing loss” that I experienced is devastating for anyone, but when it happens as a severe loss in the only ear that can hear to begin with, it’s catastrophic. People who tell me they “understand” my hearing loss because their ears are stuffy from a cold, or because they have mild or moderate hearing loss in one or two ears, end up triggering lots of suppressed rage in me. While I don’t want to undermine the seriousness or reality of anyone else’s loss, please don’t tell me that you understand how my hearing affects me if you have two ears. It isn’t the same. Unless you’ve got greater than 80 dB loss in BOTH ears – then we might be able to talk!
This graph is better at representing how the arbitrary dB scale can be described in terms of real-world hearing:
The shaded area represents the range of normal human speech. When hearing loss drops below that level, assistive devices like hearing aids are needed. Looking at this, it’s easier to see why I struggle so much with communication: without my hearing aid, the SOFTEST sounds I can hear are things like motorcycles and vacuum cleaners – and that’s in the controlled sound-proof booth. It is definitely NOT the same as having stuffy ears from a head cold!
To normal-hearing people out there: hearing aids don’t even come close to reproducing natural hearing. When my first hearing aid was turned on, I was so disappointed with the sound quality, I cried. I still remembered so clearly what things sounded like: my husband’s voice; turning a page in a book; background chatter in a waiting room; and above all, music. The hearing aid made it sound like I was inside a metal box. Everything was tinny, background noise was loud, and sounds I’d never paid attention to before were suddenly as grating on my nerves as fingernails scraped down a chalkboard. Rustling paper and clinking silverware were the worst: I cringed physically and mentally for a year or more before I finally acclimated to those intrusive noises. So don’t assume that a hearing aid “fixes” hearing problems. Unlike contact lenses or glasses, hearing is not susceptible to a quick fix, and nothing can imitate the way the ear naturally hears.
Even cochlear implants can’t completely mimic normal hearing. I had a friend tell me recently that, during a sign language class in college, the professor played a recording of what things sound like with a cochlear implant. My friend said that it was really “tinny” and metallic, and that I might not want a cochlear implant if that’s how bad the sound quality is. I hated to burst her optimism by explaining that cochlear implants are actually considered BETTER sound quality than hearing aids.
Despite the radical nature of my hearing loss (it could have been worse…but not much!), I have managed to function with some normality in the Hearing world. I don’t sign; that would really only be useful if my husband also signed. (We’ve developed our own systems of gestures and signs, a kind of secret code between the two of us, that we use when my hearing aid is out at night and in the morning.) I have an excellent speech discrimination score, since my hearing loss was after language acquisition. (Or was it? It really is so hard to make this distinction. I’ve ALWAYS been deaf in one ear. Most people consider that in itself a major handicap, but I think of my “hearing loss” in strict terms as having occurred when I was 23. Maybe I should begin distinguishing between “first” and “second’ hearing losses?) I don’t have any kind of speech “accent” that makes me “sound” hearing impaired. Many people who have only known me in quiet settings don’t realize how severe my hearing loss is until I tell them. I still use the phone – T-coils are a fabulous invention, and I”m going to protest their exclusion from most cell phones until I’m blue in the face!! – albeit to a very restricted circle of people. I’m still working on my graduate degree, and I’m still trying to participate in social life.
It’s the last part that has me worn out. Most people aren’t maliciously exclusionary, but after I’ve told them that I’m “almost deaf” and asked them to repeat themselves six times in a row, you’d THINK they’d start catching on. Instead, most people whom I know seem oblivious to the fact that I really truly cannot understand 7/10 of what they say to me in a room with any background noise. I wish I could carry copies of this explanation around with me and hand it out – maybe it would finally shake people out of their torpor and make them pay attention to my polite assertions that I can’t understand them if I can’t see their mouth, and that I’m not following what they say unless they are speaking directly to me. In many places, I’m stopped struggling to participate in social conversation altogether. Who needs the stress? Unfortunately, my growing frustrations after almost a decade of people ignoring my very real handicap feeds into my general invisibility – a vicious cycle! If I could hear, I could participate, and wouldn’t be invisible. But if I weren’t invisible, I could get more people to pay attention to the fact that I can’t hear.
It’s bad enough with people I know; it’s even worse with strangers. I HATE going into strange situations by myself. I get so tense even checking out of the grocery store – the clerks have such a tendency to try to chat with me, and get visibly offended if I inadvertently ignore them. Or people behind me – or on my left – get upset because I don’t react if they speak. I hate hate hate hate when someone is on my left; I always feel like they are invading my personal space, because I become hyper-aware of how “blind” I am on that side. I break out in a sweat, constantly glancing over my shoulder, trying to make sure I know who is there. Again, I fear the sense of insult that feel when I don’t hear them speaking to me.
My counselor says I need to stop worrying about approval or offense, because it’s causing so much stress and so many panic attacks.
There have been times where ignoring the words of a stranger that I couldn’t hear has caused problems. I was walking down a city street in the first year after my hearing loss when a man tried to ask me something. I shook my head and said something about not being able to hear him, although I apparently didn’t say it loud enough over the traffic (it’s hard for me to tell – I end up speaking too loudly in quiet places and not loudly enough in noisy ones). Because I “rudely ignored” him, he started following me down the sidewalk, presumably cussing me out the entire. I ignored him for a while, hoping he’d leave me alone – he didn’t – so I turned on him and stated, “I’m DEAF, I cannot hear you.” He didn’t seem to understand, so I repeated it, and light of comprehension finally appeared in his eyes. He turned away and left me alone.
It was a scary incident for a woman walking alone down a sidewalk in a city plagued with violence.
Two years ago, I went to our neighborhood grocery store. As I walked through the parking lot, I could see a woman trying to catch my eye, but she was a good 10 feet away. My range is about 4 feet – if you are outside the 4-foot limit, I have to concentrate extra hard to try to figure out what you’re saying, even in the quietest of situations. The clarity of the speech becomes garbled from my hearing aid the farther the source is from the microphone. In any case, the noise of traffic coupled with a stranger’s voice meant I wasn’t going to have much chance of understanding her. (“Hearing” her. I say “hearing” often when I mean “understanding.” I might be able to hear that you are making noise, but not be able to decipher the noise into actual words.) As I got closer and she started speaking, I shook my head and said “I’m deaf, I can’t hear you.” She looked suddenly offended and taken aback, and responded with “well, if you’re deaf, how do you know I’m talking to you?”
Because, of course, losing my hearing must have damaged my faculties of sight as well……..
I pointed out that I could see her lips move. She was still “suspicious”, and proceeded to follow me around the store, and speak to me in each aisle – presumably trying to “catch” me, and prove that I was lying about not being able to hear….? Or something? It was bizarre, and reinforced my sense of hypervigilant stress when I am outside my own home.
I’ve found most professors and students to be much more understanding than these two strangers, when I explain my hearing to them. (And what a long explanation it is – I can’t believe I’m still writing this post!) There are always exceptions, of course; I had a Latin professor who ended up screaming at me because I didn’t understand something he said, and often made him repeat himself. And I have students who think they can take advantage of my hearing loss for their own benefit, or get frustrated with me when I don’t hear them. And then, as in my last post, there are real instances of discrimination, when I can’t chalk up the unwillingness to accommodate my hearing loss to anything other than intentional unfairness. In general, however, I’m simply caught in an invisibility limbo, where other people don’t realize my sense of isolation, and don’t make efforts to understand my communication needs. Short of hanging a sign around my neck reminding people that I can’t hear – I really can’t hear, this isn’t just the standard “hey, it’s noisy, nobody can really hear anything!” (which So. Many. People. tell me at various social events…) – there’s not much I can do about it, except doggedly keep-on-keeping-on.
But I might have to start laughing outright at people who tell me they “understand” just because they have a cold.