Archive for March, 2009


I AM dEAF

I am finding that telling people, “I am deaf.”, nets so much more understanding and accommodation than any of the other descriptions (hard of hearing, hearing impaired, et al.) I have tried over the years. Before joining the SayWhatClub (SWC), I would have felt like a fraud using “deaf” to describe my severe/profound hearing loss to others. I have never felt entitled to use the word. I guess I thought “deaf” was reserved specifically for those who have no hearing at all?

When I first started losing my hearing, as a child, I wasn’t even aware that I did not hear the same as others. My speech developed somewhat normally, and as I gradually lost more of my ability to hear, I gained ability in other areas to fill in the gap. I had enough understanding and hearing that it never would have occurred to me to call myself “deaf”, or anything else, for that matter. Heck, I usually didn’t tell people of my hearing loss at all, unless it was absolutely necessary. However, the skills and confidence that I possessed in my younger years began failing me, and I found myself constantly struggling to hear in most situations, which is what led me to the SWC. Once a member of SWC, I participated in many online discussions and learned I don’t have to be completely deaf to use the word “deaf” to describe myself to others. I learned there are many levels of deaf/Deaf, so I started trying it out, using the word, quite awkwardly at first.

I recently went shopping for sheets and a quilt for the queen-sized bed I downsized to. I was standing, looking through a sale bin of quilts when the sales lady, from far across the department, up on a ladder, stocking comforters, said something. I didn’t really hear her and was not even sure her attention was directed toward me, but the movement on the ladder caused me to look up. It turned out she was speaking to me, trying to tell me about the sale items I was looking through. I called out to her, “Sorry, I didn’t hear you, I am deaf.” She then commenced to perform an improvisational sign language/pantomime (still on the ladder) that really was quite good, as it became perfectly clear to me that she was trying to tell me that the sale items I was looking at were 50 to 60% off of the already reduced price. Still searching for exactly what I had in mind for my new bed, I navigated closer to where the acrobatic and dramatic sales lady was standing and asked for confirmation that I had interpreted her charade correctly. She assured me I had understood her perfectly and complimented me on how well I hear for being deaf. I smiled.

Owning “deaf” doesn’t mean all of my days go as smoothly as the day I went shopping for bedsheets, as not everyone is as free in their expression, when trying to help someone hear and understand, as the sales lady on the ladder. Days such as that day continue to build my confidence and seem to make the fact that I can’t hear a minor inconvenience to my day, instead of an insurmountable disability that I am always striving to overcome.

I still have my days where little goes right, days when it seems I am going through life in a bubble, understanding almost nothing that is said to me no matter how much time or effort someone puts into trying to help me understand. On those days I find myself slowly shrinking away until at day’s end I feel but a speck of dust in the great vastness of things. Usually, though, it is my lack of confidence that plays a big part in the slightly bad days spiraling into much worse days. Sometimes all it takes is one embarrassing misunderstanding, one rude person, one simple mishap to start the ball rolling that strips me of the confidence I need for my day to go smoothly, but happily those days are less, and the good days are more, and continue to get better and better because of becoming more comfortable with myself and with telling others what they need to know about me–I am deaf.

If there was no other benefit in joining SWC than learning to own the word “deaf”, that one thing would be enough of a reason. A simple thing really, but sometimes it is the simple things that don’t occur to us.

Michele

Say What Club Convention

Last summer I wrote extensively in my own blog about the two hearing loss conventions I went to.  One of those was the Say What Club Convention in Philadelphia.   
 
Over the past several years, the SWC and their conventions have helped shape my self awareness and growth in dealing with hearing loss.  For our workshops, we invite guest speakers to talk about their areas of expertise and advancements in technologies serving the deaf/Deaf/HH population.  Each summer I come away with new information.  During the year, as many of us continue to discuss what we learned there, that information is often tossed around and expanded. 
 
More than that, the conventions are a time to connect with friends we’ve gotten to know on-line.  While convention mornings are dedicated to educational workshops, the rest of the day is free for socializing.  For those new to hearing loss, losing your hearing can be an isolating experience.  Most others just don’t understand the issues we struggle with, even after getting hearing aids or cochlear implants.  The difficulties of keeping up with conversations in social groups and at work can take an emotional toll, while at the same time many of us grapple with the loss of daily activities we once found enjoyable. 
 
For me, it was music– specifically playing the piano.  I used to play every day for at least an hour.  When it got to the point I could no longer hear the notes I played, I gave it up.  I also stopped going to my book group.  I had made many friends there and the discussions had once been a great source of enjoyment.  But, even though they all knew I relied heavily on lip reading, it was impossible to stop the natural flow of conversation as members talked over each other to be heard.  I was no longer the person they knew when I had first started going.  I couldn’t follow all the lips at once and slowly pulled away.  In time I gave up going to church (couldn’t hear the sermons), going to movies with friends (couldn’t hear), and my involvement in PTA activities (couldn’t hear!)  I used to spend a lot of time talking on the phone to friends, and I’ve all but given that up as well.  Basically my social life came to a stand still.  I became a shell of the person I used to be, and I didn’t know how to deal with it.    
 
It’s one thing to have ADA laws that require accommodations in public places, but the truth is we are rarely accommodated in our every day lives.  There’s no law that a group of your PTA friends must hire a CART provider when they all go out to a restaurant for Mexican food and margaritas.  There’s no law requiring private book groups to make themselves accessible to the deaf.  Churches aren’t required to install FM loop systems for their sermons, much less their social activities.  My life had turned upside down.  I had become a hermit for all intents and purposes.  Until I discovered SWC.  
 
At my first convention I socialized so much  I only went to a couple workshops.  It was as if the social void I’d been feeling for years was suddenly filled to overflowing.  Unlike HLAA and ALDA we don’t have monthly meetings.  Instead we ‘meet’ all day long every day on-line, but only once a year in person.  Writing is a great way for the deaf to communicate!  Many of us live too far away from hearing loss organizations to be able to attend meetings, or the meetings may conflict with our work schedules.  The great advantage of SWC is that it’s on-line, so it’s available at your convenience from your own home.  Still, we realize the value of meeting in person.  Our conventions are the only time many of us get to be around so many people who can’t hear at once.    SWC is the one place I feel there’s a true deaf/Deaf/hh community.  It’s not all about being late-deafened, or hard of hearing, or Deaf.  There are all kinds of members, and I have benefitted knowing each of them.  
 
This summer’s convention will take place in August in Portland, OR.  I’m so looking forward to another great time with my peeps.               
 
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