Category: Meniere’s


It all started nearly 14 years ago.  I was one of New Zealand’s first cochlear Implantee’s back in 1993.  In fact there was very little information about Cochlear implants on the web back then.  As editor of New Zealand’s cochlear implant newsletter I was always looking for articles, and searching on the internet for them.  

So it only goes to show that eventually my searches found the Say What? Club by way of one of the founders – Bobdeafie.  He invited me to join the group, so I did.  Next thing I knew I was getting lots of emails from people from all over the world who were like me – hearing impaired, deaf, hard of hearing, cochlear implant would be’s etc… 

Over the years, I’ve made many friends through this group – some lifelong.  I’ve headbutted with a few, cried along with them, and had many many laughs.  It’s the laughter that keeps this group together, the sheer joy of laughing about things that happen to people, and knowing because of your hearing loss, it’s either happened to you too, or could quite likely happen.  It’s a group that puts our hearing loss into perspective, helps us when things get bad and you’re down because of it, opens your eyes to the many devices that are out there to help us, and simply gives us a sense of belonging.  Coming home. 

It must be pretty good as 14 years later the SWC is still a huge part of my life.  

One of the most exciting things about the SWC is the people I’ve met.  First came Bob and Ling who came and stayed with me any years ago, then Joanie from New York, then Steven from San Francisco.  I met up with Rick in Australia, and Emily from New Jersey has been out here several times now. And just yesterday, Jeff  and his daughter was in Auckland for the day so I was able to show them around. 

Last year I won the SWC Scholarship which enabled me to travel out to meet up with so many at the Philadelphia Convention.  It was a really special time putting faces to the names I’ve been corresponding with via email for 15 years.  One of the most exciting things to happen to me in my life.   I came home to New Zealand, with some great memories, ones that I’ll keep forever. 

The SWC opens up the world as well.  Not only do we have people in America, but also Australia, New Zealand, England, Finland, India, Canada, and South Africa.  We learn about different countries and cultures, and we know if we’re ever travelling in those parts of the world, there is a friendly face waiting for us to meet them.  

I would recommend SWC to anyone who is wanting to find out about  hearing loss, or just wants to ‘hang out’ with people who you know will understand the frustrations that we come across in our every day lives when one’s hearing isn’t 100% perfect.

For more details… Head to… http://www.saywhatclub.com/ 

I look forward to getting to know you !

 Cheers

Robyn

 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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