Though I find myself favouring the expression “hearing loss” to talk about “hearing that’s not ‘normal'”, it always feels wrong for me.
You see, I haven’t lost my hearing: I just never had it. Well, the part that’s missing. Because there is a sizeable chunk that is there. Give me 60 dB in any frequency (down to 25 in my better ones) and I’ll happily hear.
As far as I can tell, I was born with “hearing like that”. I share my cookie-bite audiogramme with my brother and father, a typical situation of hereditary congenital “not hearing well-ness”.
Saying “hearing loss” makes it sound like at some point I lost my hearing. Like I have a “before” and an “after”, or that my hearing is deteriorating. That I have an awareness of what life with “more hearing” is like. But my “loss-less” story is very different from the stories of loss that others like Stu, Christina, Howard or Angie have been through.
I have not suffered the trauma of losing. I only have the grief of having never had, and of realising at age 40 how much more difficult my hearing impairment made my life as a child and a teen (even an adult!) during all those years where it was first undiagnosed, then underestimated to the point I just decided to cope, because it was “no big deal”.
But it was, and it’s painful to think about.
I am left with not knowing how to describe myself or my hearing, in terms that are both understandable by others and do not betray my experience of living with these somewhat wonky ears. I fall back on “hearing loss” in English, and “je n’entends pas bien” in French, but they feel like a pair of jeans that is not quite the right shape for me.
This struggle with language is, in my opinion, symptomatic of both the lack of general information about D/deaf/HoH issues in the hearing population, and (related of course) the greater social stigma (leading all the way to denial in some cases) around hearing vs. vision impairments.
Because of our unease around malfunctioning ears (yes, I dare say that), we do not speak gladly of hearing loss/impairment/problems, and the inadequacy of our language is there to remind us of this state of affairs.
We “on the spectrum” are tossing these terms and expressions around, and will continue to do so for a while before they agree to settle.
Until then, we will do the best we can with the words we have — at the risk of being misunderstood.