The Stigma of Hearing Loss

The Stigma of Hearing Loss

hearing aids

These are my hearing aids. I wear them every waking hour except when I am tired of hearing things.

When I don't wear them, I hear very little. When I do wear them, sounds can be distorted and speech indecipherable. It depends on the size of the room I'm in and how many people are talking at once. Even with my hearing aids, which are top of the line, expertly programmed, I can only discern 50% of words spoken to me unless I can see the speaker's face in which case the percentage goes up to maybe 80%. This rate is dependent, however, on never taking my eyes off the speaker.

The type of hearing loss that I have is related to nerve damage as opposed to being a conductive hearing loss. In the latter case, making sound louder -- amplification -- works wonders. It helps me somewhat but leaves the problem of discernment. So someone could be speaking very loud to me but unless conditions are right, including the tone and timbre of the person's voice, my hearing "system," as it were, cannot efficiently sort out the words.

This means that to participate in conversations, I must be very committed to expending the energy required to track what people are saying. Professionally, this means that I pay very close attention to whomever is speaking. I don't take notes because that would require looking down. There is a big risk to looking down while someone is talking to me so I don't do it. This means I have to remember what went on. I have to concentrate, really concentrate.

These situations can be difficult, but the toughest thing about hearing loss -- for me -- is stigma.

Stigma is a very tricky thing because it works in multiple ways. First, there is the actual stigma assigned to a condition. So a person with mental illness, for example, is considered by many to be undependable, unstable, and not capable of functioning well. In this case, the stigma is in the minds of the people judging the person with mental illness. But stigma also works in the minds of the people with mental illness who are being judged. They are part of society as well and have absorbed the same attitudes and biases as the rest of us. So they apply the stigma they've learned about mental illness to themselves; they buy in to the ways in which the stigma defines them. They also perceive that others are stigmatizing them and sometimes that's true and sometimes it isn't.

I feel the same confusing dynamics around my hearing loss. I believe there is a stigma assigned to persons with limited hearing. Generally, I think the stigma involves aging, diminished capacity, and receding relevance. The most stinging part of the stigma, as I perceive it and, remember, that's a key factor in stigma -- how the stigmatized interpret the stigma -- is the possibility that people will perceive me to be less intelligent because of my hearing loss. That goes to the core of the person I have tried to be. Said another way, I'd rather be called brilliant than beautiful although there's scant chance of being called either. In some ways, my hearing loss has required me to become sharper, less casual in my dealings, more intense, and certainly a better writer since the written word is now my principal means of communication. So maybe if I'm not brilliant, I am still smart. That's good.

Self-pity is a danger when one has a problem like hearing loss. That, and anger. I have learned not to be angry at the situation or at people who don't help me or who think I should be able to hear them because they can hear themselves. I laugh off instances where I've completely screwed up the content of a conversation and said something ridiculous. Now, if I'm not sure, I will ask, "What's the topic?" Still there are times when I am trapped somewhere, in a big meeting that is breaking up or a noisy party, that becomes such a hellish cacophony that I have wanted to cry. When there is so much noise and so little hope of interpreting any of it, that I become quite literally filled with woe and self-pity.

But self-pity to me is the gateway to self-loathing. So it can't continue. It has to be cut off fast.

As my hearing loss has worsened and my adaptation to it increased, I've become more open, more "out" if you will. I'm a believer in owning one's stuff, whatever that stuff is. But hearing loss has been hard to own or own up to. And the fundamental reason is the stigma that I feel or I've created or I imagine. It's hard to overcome.

So maybe next time you're talking with someone and you catch a glimpse of their hearing aids, know that they're working hard to hear you and that there's a lot more going on than you might suspect. It's not all bad. It's just a lot.

Jan Wilberg


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