Apparently there's this magazine called Hearing Loss, and the May/June 2012 issue has an article by composer Richard Einhorn about losing all hearing in his right ear and most (70%) in his left about 2 years back. Fortunately for Einhorn, his loss was flat -- meaning that he could, with amplification, hear all frequencies a normal person can (as opposed to folks like me, who have such bad cochlear damage that no amplification will get me most of the right half of the piano).
Here's what I like about the article: Richard approaches his hearing from the perspective of a musician who happens to have lost his hearing. It's not a deficit model. It's not about "fitting within one's limitations." Instead, it's about finding ways to get to do the things you want to do. And he happens to use the best audio equipment available, because... well, hearing aids are frustrating.
I turned to the Web and started to research a hearing aid... Alas, finding useful descriptions, specifications and technical information about hearing aids was much harder than I could have imagined! Most of the hearing aid websites featured large pictures of smiling grandfathers, happy grandmothers, and little else. Digging into the “professional” areas of the sites provided me with a lot of information on different styles, all designed to make the hearing aids invisible. There was very little truly detailed information about how hearing aids processed sound (but plenty of vague assurances that hearing aid X had the best sound). This seemed backwards: all I wanted to do was to hear well! I couldn’t have cared less about the style, let alone the color.
Yeah, tell me about it. I am, by the way, stunningly jealous of Richard's amazing in-ear monitor, which he uses for composing music. He wrote that it was "not cheap" -- but his hearing aids cost nearly ten times that amount, which makes me guess the monitor was perhaps somewhere on the order of $500-$1000. Honestly? Compared to hearing aids of the type I'm used to needing, that's not bad.
Richard talks about trying to find ways to hear conversation, and the battle against background noise; even a mic a few feet away from someone's mouth is not close enough for its directionality to prevent noise from creeping in. He ended up getting microphones that go around his friends' necks and a receiver that goes around his, similar to my iCom/SmartLink pairing, which does the same thing, except with only one mic unit instead of Richard's 4, meaning he can have an easy conversation with 3 people while I can only amplify 1. Maybe I should look into additional microphone units at some point, possibly when I'm teaching.
He also did something I'm considering, which is buying a directional mic for his phone and using an amplification app plus plus earbuds as a sort of portable conversation aid. Richard's got an iPhone, so he uses the Blue Mikey and SoundAMP R; I don't have an iPhone, so I've been experimenting with my Zoom portable recorder (which I got to record my piano playing a few years back) which has directional modes. (Or rather I was experimenting with it until I lent it to my cousin for her sound experiments. I should someday get it back.)
Anyway. It's cool to see someone write openly with this sort of perspective -- problem-solving is far more productive than pity any day, in my book. Richard has a huge advantage, though: he lost his hearing as an adult, after already proving himself as a successful composer, so he was able to speak from a position of power in a way -- his was a fight to keep the abilities and respect and social access he was already used to having. And we do need people like that; we need people to show, by their lives and voices, that the bar needs to be up here and not down there.
At the same time, when he says things like "It is vitally important that people with hearing loss stop trying to hide their hearing loss. There is absolutely nothing to be gained by doing so, and so much
to lose," I think: there is plenty to gain by hiding my hearing loss, and so much to lose by revealing it.
I, too, come from a fortunate position of sorts in terms of hearing loss. My deafness is not genetic, so I don't have to wonder whether I want to risk passing it on to any hypothetical next generation. I lost my hearing as a toddler -- young enough to not be able to remember hearing, but old enough to have acquired basic speech. My communication skills were developed enough that I wasn't diagnosed until I was about to enter school, so there was a brief period of a few years where I wasn't hearing, but was treated by adults as such -- so when I barrelled into school, I carried both a new burden of assistive devices and special treatment and the stubbornness of a 5-year-old who wanted to do everything and didn't quite -- thank God -- understand why grown-ups wanted to treat her special all of a sudden. I could have wound up with deficit thinking ("I'm broken and can't do anything,") but I ended up training myself to constantly work on an abundance and hackerly mentality instead (not without its own costs, but that's a different story).
But there's plenty to lose, especially when you're a kid. Respect, both from your teachers (subconsciously) and your peers. Opportunities that you never find out about because other people's preconceived notions of your limitations cause them to not even think about asking you (whereas if you don't tell them you're deaf, they do think of you). Energy. Energy and energy and energy fighting all of the reactions of other people, reminding yourself that you can grow up to be who you want to be, and not anyone else's limited vision. Time -- time spent educating others, dealing with your own exhaustion and frustration, bottling up rage.
And there's plenty to gain, mostly on the flip side of that coin. Respect. Opportunities. Access, in a twisted sort of way; I feel like "passing" gives me access to a wider world because people don't... stare. They don't note me. (Okay, sometimes I'm marked-out anyway -- for instance, as a woman in tech. But at least it's one less mark.) I don't stand out, don't feel the pressure to perform as a Representative of my Subgroup. I can relax, breathe, be tired, feel a little more stable about keeping the respect I have -- feel a little less pressured to prove myself at every turn.
Maybe a lot of this is me, but a lot of it isn't just me, and a lot of it is me but in reaction to a world out there that's very real. Especially as a young person who hasn't yet gotten the chance to "prove" they're capable and worth investing resources in, the opportunity costs of revealing a disability can be terrible and real -- or at least that's how I felt, and how I still feel, as a young person in the early bloom of what looks to be like a wonderful career. That's why I hid my hearing loss until I was "more established," until I had at least made a bit of a name for myself in the professional world of open source, until I had some grad school under my belt; it's hard to argue that an engineering grad student is completely stupid. Social categorizations can work to my advantage. Once I had permanent proof of some sort that I "wasn't dumb," then I started coming out of the proverbial closet, more and more. And even now, I still struggle.
Whoa. I didn't... actually intend to write all this. I was just copying down a quote from Einhorn that amused me, and then...
This is one of my active projects and has been since at least this spring: coming to terms with my hearing. I'm discovering both this huge, huge pile of explosive charges deep inside me that are related to my deafness, and the solidity and mass and thickness of these massive steel blast doors containing them. It's far, far buried, but... oh, if I could find ways to not... spend so much energy compressing all this other energy, then --
If you know me, and think you've seen me have a lot of energy already, you have no idea how much more there could be.