Archive for April, 2009


This morning I woke up coughing, again. My head, back and chest hurt. My throat was raw and swollen. I have been sick for over a week. With these latest warnings of a near swine flu pandemic, a doctor seemed like a good idea. The receptionist was able to squeeze me in with someone I hadn’t seen before. I could go right away.

The only problem was it I hadn’t seen this doctor before. Seeing a new doctor shouldn’t bother me. But I like MY doctor– the one who remembers to face me when speaking.

I have requested more than once that the clinic write “deaf ” on my chart. Trouble is they no longer use physical charts with paper. All my information is on a computer notebook that gets carried from room to room.

So once again, I told the receptionist I am deaf as I signed in. I actually had to tell her three times. First she talked to me with her head down. Next she said something while I was signing insurance forms. MY head was down that time. And finally, before slogging over to a chair in the waiting room, I reminded her a third time I couldn’t hear well.

“Please tell the nurse to tap me when she’s ready,” I ask.

“No problem.” she says.

Yeah. Right. I’ve only asked that a nurse tap me each and every doctor visit for the past five years. And the receptionist fails to relay this info — each and every time.  Or maybe she tells the nurses and every one of them ignores it — I’m not sure who is to blame. In any case, I sit and wait. After about ten minutes all the other patients have been called away. I am the only one left in the waiting room, when finally I look up from my magazine and watch as a nurse stands across the room to call my name. No tap. Luckily I looked up at just the right moment.

“I called you before, but you were reading your magazine,” she says. “Are your ears plugged up?”

“No. I’m very, very hard of hearing,” I explain.

“Is that from the cold?” she asks.

“No.”

“I need to ask you some questions,” she says. “blah–blah. blah, blah BLAH–”

I stop her mid-sentence. “I don’t hear well,” I say, “Can you look at me?” (The fifth time I’ve reminded someone I couldn’t hear today.)

“OH! Yes, well– Do you feel any soreness or pressure in your ears?”

“No.”

“Tell me about your symptoms.”

I tell her.

“Do you blahblah-”

“I didn’t get that. Can you take your hand away from your mouth.” (sixth time)

“Oh sorry,” She smiles. “Do you have a temperature?”

“I have had one off and on, but I didn’t take it this morning.”

“We’ll take it in a minute. How’s your blood pressure?” She starts to pump up the cuff. I am silent while she listens. “It’s blah-blah blah-blah blaah-blah-blah,” She’s looking away again.

“Sorry? I didn’t get that, I couldn’t see your lips.” (seventh time)

“OH! So sorry!” She smiles again, as she gets out her ear thermometer and goes for the ear.

“Wait,” I say. “I have to take out my hearing aid.”

“You wear hearing aids?” she asks with a confused look on her face.

“Yes, I’m deaf.” (un-frickin-believable!)

She takes the temp, then says doctor will be in shortly. I wait for the doctor.

___________________________________

“Hi! Blah-blah-blah-blah–”

“Nice to meet you. I’m very, very hard-of-hearing,” I interrupt. “I need to see your lips.” (ninth time)

“Oh!” she says. She’s got all on my info on the small laptop. She scans the screen, then asks,”How did you lose your hearing?”

I’ve explained my hearing loss to at least five different doctors at this clinic over the past twenty years. I go to a specialist, and I know he has sent his findings on several occasions. I know there’s info about my hearing loss somewhere in my real physical chart, wherever that is now. But OK– maybe it’s not her fault. She’s new. She’s busy. There must be someplace to flag a hearing issue in that laptop. I wonder if maybe there’s some weird glitch with their medical software that prevents them from entering or highlighting a hearing loss. I’m trying to give them the benefit of the doubt.

I tell the doctor my hearing loss history and notice she’s not typing anything into her laptop. (sigh)

So. I’m up on the examining table now. She feels my lymph nodes and mumbles.

“What?” I ask. “You turned away.” (tenth time!)

“Your lymph nodes are swollen.” She gets out her little otoscope. I know what’s going to happen next. It’s been a couple minutes. She’s concentrating on her diagnosis and has already forgotten about my hearing loss. I can see it in her face. I wait. Sure enough. She dives in with the otoscope. “OH!!” she exclaims.

“Do you need me to take out my hearing aids?” I ask. (eleventh time!) I take them out.

She says something. “I can’t hear you without my aids. . .Can you look at me?” (twelfth reminder!!)

“Do you hear pretty well with your hearing aids?” she asks. After that, I lose count. She babbles away about treatment. I have bronchitis. I need her to write some things down, cuz I’m just not getting it. Medical terms.

Do I hear pretty well with my hearing aids? You gotta laugh.

 In my soon-to-be-published novel Lip Reader, a church pastor goes out of his way to make sure his deaf congregants understand the music and sermon. He uses sign language while preaching. The music is interpreted through sign and a loud beating drum. Any deaf person visiting this church for the first time would likely feel a connection with the other deaf people there.

Most of us are aware that a Deaf culture exists. Simply visit a state school for the deaf, and observe students and teachers communicating mostly through American Sign Language (ASL). Or sit in on a coffee house “chat” with a local Deaf social group, and notice how quiet the room is while attendees use sign. The Deaf culture is something its participants are proud of, a culture with a shared ASL language and communication style that goes back many years.

Now observe a local meeting of a hearing loss support group. The keynote speaker communicates with both sign language and orally. A man sitting in the back relies on an ASL translator to understand the speaker. A row of people read real-time captions from an overhead screen as a person types what the speaker is saying. Two women sitting up front watch the speaker’s lips attentively to catch each word spoken. All of these people, except the sign interpreter and typist, are hard of hearing. Yet they all have different ways of communicating and understanding one another.

Without a shared communication style, can individuals with hearing loss really have their own sense of community or culture? Readers of this blog recently shared their opinions…

“I have total hearing loss in both ears. But because I was adult deafened and am oral and do not use sign language, I am not considered culturally Deaf, rather hard of hearing. Yet I am “deafer” than 95 percent of the students at the local state school for the deaf who have some residual hearing. I am in between cultures. I cannot participate in the hearing community, nor the Deaf community.” – Sherry Mason, Missouri

“My husband has hearing loss, and it is very difficult to hear in restaurants and other public places. I think people who don’t deal with hearing challenges are unaware of the obstacles they create. Is that cultural?” – Amy Hemingway Smith, Texas

“How about coming up with a definition of ‘culture?’ And with some parameters for what you mean by ‘hard of hearing’ people? Do you mean only people with partial hearing loss who use speech (and maybe speechreading) to communicate? I’ve been assuming you are distinguishing between Deaf people (who use sign language) and hard of hearing people who don’t, but not everyone will realize that. Also, I still think that only people who socialize with several oral hard of hearing people at the same time can really answer the question. People who have never done so aren’t in a position to know themselves whether or not there is a HOH culture–they won’t have seen it in action.” -Dana Mulvany, Washington, D.C. (has hearing loss)

The last comment raises a good question. How can a hard of hearing (HOH) culture be defined?

  • A shared communication style. They prefer to speak orally, instead of only using sign language. Lip reading (also known as speechreading) is also a common way to understand one another.
  • A strong reliance on technology. Hearing aids and assistive listening devices are available to help the HOH population understand speech and hear important sounds.
  • A strong reliance on closed captioning. Captions assist with understanding television, movies, and (when available) live presentations. This could also fall under the technology category.
  • Emotional connection. This would include not always feeling connected with the hearing world because of difficulty understanding speech. For those not comfortable with sign language, they may not feel part of the Deaf culture. Emotionally, individuals with hearing loss might feel somewhat isolated from the hearing and/or Deaf “worlds.”
Sound Off
If a hard of hearing culture does exist, what do you think defines it? Post your comments here and on the Lip Reader Blog: http://shannagroves.blogspot.com.  

Author Bio:

Shanna Groves is the author of Lip Reader (June 2009 release), a novel about an Oklahoma family’s hearing loss experiences during the early-1980s. Read the Lip Reader Blog at http://shannagroves.blogspot.com.

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