Monday, August 11, 2008

Legally Deaf

When I was growing up, I used to always say that I am hard-of-hearing (HOH) or just said I didn’t hear that well or had a hearing problem. I didn’t think of myself as “deaf.” I had classmates who were deaf and I knew I could hear better than they could. To me, “deaf” meant not being able to hear a thing. Nada, zip, zilch.

I had a really good friend who was Deaf (capital D-means part of the Deaf Culture). She did ASL and the whole bit. She spoke pretty well, I thought. She did have some hearing and called herself HOH, too, but couldn't talk on the phone that well. We lost touch when she got divorced and moved. We even worked together for a few years until her divorce.

Lately, though not consistently, I just cut to the chase and say, “I’m deaf.” I can’t really hear anything in my implanted ear. And before it was implanted, I didn’t get any use out of it. I heard very few loud sounds if they were low enough, but if you talked into my pre-implanted ear, with or without my hearing aid (HA) in it, I would not hear you.

By the same token, I know that I will still be deaf in my implanted ear when I take the CI off.

With the HA in my better ear, I can hear, but I do not have good hearing with it. I am “deaf” without my HA. I wouldn’t hear you talk into my ear, but with my HA on, I would hear you and maybe get a few words, but I won’t get everything. I even amaze myself if I can get through a conversation without getting a repeat more than three times.

So, out of habit, I seem to go back and forth with “I am deaf” to “I am HOH” or “severely HOH.” I feel like I am lying if I say, “I’m deaf” even though without my HA on in my better ear, I can’t hear.anything but loud noises. It's hard to label myself as "deaf" at times.

I am going to confuse myself once my brain gets trained to hear with the CI. Am I deaf or HOH?

When I talk about my vision loss, I tell people I am legally blind or that I don't see that well or even "I have tunnel vision."

I have less than 20 degrees vision. There's a term for it: Legally blind. Seems simple enough.

So, is there a definition for “legally deaf”? It would be so much easier to explain that instead of trying to explain “severely HOH" in one ear and deaf in the other.

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At Tue Aug 12, 09:10:00 AM , OpenID suddensilence said...

Shari, you did such a great job of describing how hard it is to convey hearing loss to other people. I can totally relate to this post!

Like you, I always thought of 'deaf' as meaning the person hears nothing at all. (I think a lot of people think this way.) I always described myself as HOH (hard of hearing) or hearing impaired. That's how Dave describes himself too. It wasn't until I actually lost all of my hearing and really couldn't hear anything at all that I changed to 'deaf' to describe myself.

Then I joined forums and mailing lists, and there are people who say they are deaf but they can still hear sounds. Some people use speech as the cutoff--if you can't understand speech, but can hear other things, you are deaf.

Sometimes I'll say "totally deaf". I have no idea if there's a definition for legally deaf though!

Even the "severe" and "profound" hearing loss labels are confusing. My loss is in the profound range on a chart and there's no hearing aid that gives me any sound. But there are lots of people out there with a profound loss who can understand speech with a hearing aid. There's such a wide range of loss along the spectrum!

Then CI's come into play...but I've already decided that I'll still identify as deaf when I'm activated. I'll just say that they help me to hear sounds, although I'm deaf. Which I'm sure will confuse everyone. LOL!

~ Wendi

At Tue Aug 12, 09:42:00 AM , Blogger Becky said...

I think it's perfectly acceptable to use whichever term you feel is necessary to be able to communicate best with whoever you happen to be talking to, especially if the levels change somewhat when you use the different devices or go without.

At Tue Aug 12, 10:01:00 AM , Blogger Eileen said...

Thank you so much for this very informative post. You raised so many issues, that I had never thought of. Excellent points.

It must be frustrating, but I do think you should do with what feels right for you. I think so many people have so much to learn about CIs,deaf and the whole process. I have learned so much through Heather's blog.


At Tue Aug 12, 03:57:00 PM , Blogger Beth said...

You continue to educate me in such matters. I had no idea that communicating to others the degree of hearing loss was so difficult.
I agree with Eileen - you should do what makes you feel the most comfortable.

At Tue Aug 12, 06:47:00 PM , Blogger Shari/"Whiger" said...

Wendi-I am sure many of us who deal with hearing loss like we do kind of hang in limbo-what is the right label? Just today, I was standing in line waiting to talk to the receptionist at the clinic and the woman in front of me was looking at me and my kids were sitting in chairs in the lobby and they were pointing at the OTHER receptionist. She was calling me. I just went over there and automatically said, "I'm deaf. Sorry." (Another thing, why be SORRY? I have to stop that.) But it explained why I didn't hear her call me from a distance of maybe six feet? I don't think people are exposed to people with hearing loss that much, because they don't expect you NOT to hear. Aggghh.

Becky-Talk about identity crisis!! What am I? LOL. I do say more and more lately that I'm deaf rather than HOH. Thanks for your understanding.

Eileen-HUGS. Thanks. On paper (the audiogram) it says severe to profound loss (there was a downward slope in hearing) in my better ear. My worst ear had CNT (Could not test) meaning that there's no speech comprehension at all. Zero. With the aid of HAs and CIs, we can hear, but we are still deaf without it. Who's Heather?

Beth-HUGs. I'm glad you feel that way, too. Right now, all of you now know the issue. If you didn't, you would still be wondering why the person said he/she was deaf when they seemed to understand and hear well? It's a catch 22. I do say "I am deaf" a lot lately, though. :)

At Wed Aug 13, 08:34:00 AM , Blogger Breazy said...

my paternal grandmother was legally blind for years then all at once went completely blind, this was all from severe diabetes. It took her a while to be able to tell people that she was legally blind.

Have a great day!

At Wed Aug 13, 10:01:00 AM , Anonymous Kila said...

I like your explanations better than just "deaf" or "blind". And I'm learning so much from you, thank you.

Do you use sign language at all, or is that too difficult to see/watch?

P.S. We'll be at the new church this weekend for my cousin's wedding!

At Wed Aug 13, 03:10:00 PM , Blogger Shari/"Whiger" said...

Breazy, it does take awhile to come out and say that I have vision problems or that I am legally blind. It's hard to face the fact that it's actually happening and then you are afraid to be too emotional about it.

Kila-I get by. I can see signs, though I prefer the signer to sign closer to the body and face. No wide, out-of-range signs. Sign language is a very visual language and some signs are spread out. I have to remind the signer to sign closer to the body and face.


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