When I was growing up we never talked about my hearing loss. Or the hearing loss of my brothers. It almost seemed like I was supposed to pretend that it didn’t exist. I can imagine my Mom saying something like, “You’re fine. There’s nothing to worry about.” Only once can I recall a reaction from my Mom when one of my siblings mentioned that a cousin had gone completely deaf (one of my Dad’s sisters sons). Mom very quickly reacted and told us not to think about that. At the time I didn’t think much of it. Looking back I suppose it was a mother’s automatic instinct to protect her children from unpleasantness. Or perhaps, her own fear that something similar could happen to one her own.
I think many of us with gradual hearing loss start to feel like outsiders as our loss progresses. We don’t have a recognized group or community. We’re trying our hardest to be “normal”. But we’re not. An enormous amount of energy goes into coping, figuring out and piecing together in order to communicate. And I’ll admit that there I times I give up and pretend, smile, nod. And hope my non-sequiters are chalked up to quirkiness or humor rather than stupidity.
“…Unlike the deaf, who have an identity and the pride that accompanies it, we (HOH) don’t. We have shame.” Brenda Batatt, Executive Director, Hearing Loss Association of America. This statement brought tears to my eyes. While I like to think I’m always proud of myself and my accomplishments the truth is that each time I don’t hear well I feel a little bit bad. I try to rationalize it away and not let it stop me, but it’s still there underneath.
I’ve had forty years to work on skills such as lipreading, contextual filling in the blanks and assessing body language and facial expressions. I’m really, really good at it. Many people are shocked to learn the extent of my hearing loss. I’m sure I kid myself a bit about how well I do. Just ask my husband and sisters. All that said, the coping mechanisms can really easily break down. If someone doesn’t move their lips much when talking, turns away from me, covers their mouth, glare, being too far away, etc. And then I am left in limbo. I’ve heard but I didn’t understand.
So what am I? No, not in an existential sense. In terms my hearing loss. Am I Deaf, Hard-of-Hearing, Hearing Impaired, Late Deafened? The surgeon told me I’m Deaf. But when I say that to other people they think that means I hear nothing. I used to think this too. Another reaction is that people think I know American Sign Language (ASL). While I love languages and would very much like to learn ASL, I don’t currently sign.
If I say Late Deafened Adult, which I think may be most accurate for me, most people don’t know what this means and just assume it means Deaf. And again assume I hear nothing at all.
Hard of Hearing (HOH) seems to go over the best. People usually understand that something is up but still understand that they can talk to me. I try to explain a few basics that I need to communicate such as get my attention visually before speaking and don’t talk to me unless I’m looking at you. But they forget. I do my best to accommodate them.
Once I have my cochlear implant, where do I belong? Which checkbox or category is me? And how do I explain it so that people can understand what my hearing ability is?