Mapping #9... Twitchy Face

A few weeks ago I had my ninth mapping. My audiologist is on maternity leave so I had the pleasure of meeting one of the audiologist legends at the HEAR Foundation whose name I've heard for years. Mary Lynn had a completely different style from Michelle from personality to technique. I still really miss Michelle though, and I can't wait to work with her again when she's back in January.

Mary Lynn got right to the point and had me listen to a lot of different sounds that I could see on the computer. She said they were like keys on the piano, and I told her what was comfortable and what was tolerable and what was barely discernible until she had a program mapped out.... just like that! She flipped it on, and I was dazzled. I could clearly make out the little nuances in Mary Lynn's voice. I told her the sound of this mapping was the most fabulous yet from what I could tell! It seemed so crystal clear and on the money, but then something funny happened. Yeah... my eye twitched. In fact the right side of my face twitched with each sharp, crisp syllable that Mary Lynn spoke. The lower rim of my eye was vibrating like a chain saw. Real attractive, mate, eh?

Reluctantly I told her that I was twitching. Very reluctantly. Blah. I offered to "live with it", but she was having none of that nonsense. Before I left I had three electrodes turned off in order to quell the twitch. She said the other electrodes would kick in. *sigh* She sent me down to the parking lot to listen to the traffic on the freeway to see if I could tolerate my new program. I could. Easily. Instead of playing in traffic, I went to give her the good news. (...totally kidding about that traffic thing... :)

I left my appointment and talked to my friend, Melissa, on the phone for a while to road test the new program. It wasn't pretty. I found myself faking more of the conversation or talking more than listening... an old habit to squeak by. My car produced a lot of static feedback with the telecoil on making it even harder to hear. By the time I parked the car and turned it off though, I was able to follow more of what she was saying, but since then I've gone back to using my videophone for some of my more important calls, but I still call up all the besties (except Dannette who gets to see my mug on the videophone) to give them my love and use them for auditory practice. They have all been patient with me so far when I know it can be a little tedious talking to me lately.

The game plan is to turn the electrodes back on at the next mapping and see if my face can adjust to all the excitement. It's kind of funny that on one hand, there's really no new breakthroughs for me since that mapping, and I feel like I'm struggling more now (just a little...) ....but.... oh the sheer massive power of that thing when it hasn't been on in a while!!! I had a splitting headache over the weekend and just couldn't tolerate the sound of the CI. I wore my HA in my other ear and just relaxed in the familiar lull, but it was so frustrating to realize I could understand hardly a word my son said this weekend until I finally put on my CI yesterday. (It also made me realize that I hadn't been putting in as much time signing with my son lately, because he only signs when I prompt him to, not when he wants to say something.... sure came back to bite me when I needed it!) Putting it back on though... whew.... so much power I thought it was going to blow me out the window. Even the silence will come blasting in, especially after a long break without wearing it. Loud silence is probably the hardest thing to explain to both(non-CI wearing)deaf and hearing people because it seems like such an oxymoron... How can there be such a thing?

Anyway, stay tuned for Twitchy Face Chronicles (a.k.a. Mapping #10) in the near future.

Have a wonderful Thanksgiving everyone! :-)

What's Next for Nashville? You Can Help! (an update on that bridge that hears, tap dances and sings...)

This is an update to my last post regarding the recent name change of League of the Deaf and Hard of Hearing who merged with the EAR Foundation in Nashville, Tennessee to the lovely (please continue noting slight sarcasm) Hearing Bridges. I have more details this time around. There were 15 members voting on the name, while one member, who is hearing was absent for the vote. Just for the record there is only one person on this entire board who is deaf, Nancy Yater, and while she may feel out numbered, she isn't going anywhere! Her plan is to have an advocate committee of deaf and hard of hearing to bring their concerns to the board. (*ahem* One small concern comes to mind at the moment... but moving on....) There is also one hard of hearing member and one CODA (child of deaf adult). Just to clarify, 13 members who voted are hearing, one is hard of hearing, and one is deaf.

The decision to change the name from League of the Deaf and Hard of Hearing after 80 years due to the merge with the EAR Foundation was approved by a vote of 11-4 (with one member absent and not voting) in favor of Hearing Bridges as the new name. Nancy Yater, the lone deaf member of the board, and 3 others on this board were the only ones to dissent.

What’s really astounding to me is that, neither the CODA member nor the hard of hearing member voting, dissented. I think I’m more disappointed that a CODA was a consenting vote, because personally speaking most CODAs I’ve known have a special bond, not only with their parents, but with the deaf community as well.

On the other hand, I probably should not expect most hard of hearing people who have had no or very little connection with the deaf community to fully understand the dynamics behind this name, and to that particular group it might symbol hope to be more (as usual please note slightly more sarcasm here) “normal” one day, and to those who lost their hearing gradually or later in life, it really should be understandable to want to attain what they consider a normal hearing status quo… BUT that ladies and gentlemen of the jury, is exactly why this name is offensive to a large percentage of the population that this organization serves. To force that facade on all clients who don’t strive to be hearing…. will never be hearing… and live full lives in spite of not hearing...it's kind of like saying you're incomplete without hearing. The name doesn't exude an aura of support for those receiving services but instead gives a subtle (like...oh you know... a ton of bricks type subtle) air of superiority.

Look at it this way, it’s quite patronizing to name a place many profoundly deaf people go to for services HEARING Bridges. Seriously, would you send a man in a wheelchair to Walking Bridges? Or a blind woman to Seeing Bridges? Or how about that brunette girl to Blonde Bridges (okay that might happen..) ....but what about your dog to Cat Bridges? Seriously... no matter what that little mutt thinks...or what you want....he's just not ever going to be a cat! ....or how about we take a detour from Grandma's wild and crazy Bunco night and expect her to go be-bopping at Teen Bridges because if she tries hard enough she can be 16 again, right? Trust me, Grandma doesn't need to be 16 to have a good time, and I'm sure she'd find it maybe a little patronizing if you thought she needed to be in order to have a fabulous life. *SIGH* Not only is the name Hearing Bridges patronizing, thoughtless, and demeaning to the deaf community… it’s an OXYMORON. It just doesn’t have any rhyme or reason for the majority of the clients serviced by that agency.

My old friend from way back when, Kim Dance, is now the president of Tennessee Association of the Deaf, and she sent me a copy of an email that the board chair, Ron McCoy, has been sending out to various members of the deaf community in regards to this sticky situation. I have permission from Kim to share it here and all I’m doing is copying and pasting as is. If you are anywhere near Nashville the day of this meeting please go give this group some moral support and spread the word. The address for the meeting is 415 Fourth Avenue South, Nashville, TN 37201. You can also join the group “People opposing the new name HEARING BRIDGES instead of LDHH” on Facebook by simply clicking on the title of this post . Numbers speak volumes. Personally, I hope the board opens their eyes and invites the deaf to join them... no....make that encourages them and welcomes them with open arms, willing spirits, and GENUINE smiles on their faces.... who better to learn about the deaf community than from say... the deaf community perhaps? Just a parting thought.... and now for the email from Mr. McCoy...

From: McCoy, Ron R

Sent: Monday, November 16, 2009 2:49 PM
Subject: IMPORTANT - Town Hall Meeting - Thursday December 3rd at 7:00pm at Hearing Bridges

Hello all:
Hearing Bridges formerly known as the League for the Deaf and Hard of Hearing and the EAR Foundation will be hosting a town hall meeting with the community on Thursday December 3rd at 7:00pm at Hearing Bridges.

The Board of Hearing Bridges will be the host of the meeting.

It has been brought to this Board's attention that many of you would like an opportunity to communicate with the Board directly regarding the name change, and the Board would like to collect more information. Please understand that there will not be a direct resolution that will come from the meeting that evening, and it will allow the Board the opportunity to listen to your responses both in support and against the name change.

There will be some simple ground rules for the meeting to facilitate o! rder:
1) Each person present will be given 3 minutes with a 1 minute warning to air their grievances, ask questions, or present to the board their opinions.
2) There will a platform for each person to present. In courtesy of each presenter we ask that all other persons remain seated.
3) The Board would like the opportunity to ask questions of each person that speaks in order to collect more information with a 2 minute time limit.
4) The process of recognizing each person will be announced that evening, and it will be fair and orderly. The goal is to give everyone the opportunity to speak.
5) Please no personal attacks and/or slanderous remarks and profanity.
6) This meeting will begin promptly at 7:00pm and end promptly at 9:00pm.

There will be interpreters present at this meeting.

We would love to have each and every one of you come to this meeting, so please do. This meeting will mean nothing without YOUR direct involvement. Pleas! e come, regardless of your stance it will be a great opportunity for the community and the Board to get to know each other.
Thanks,
Ron McCoy
Board Chair

Seriously Board Members.... HEARING Bridges?

Tennessee is my home state. I'll always feel grateful for the opportunity given to me to represent my home at the Miss Deaf America Pageant years ago when I was still so new to the Deaf community. I was completely accepted and treated with respect. I received so much help during that time, whether to carry out my state duties or to prepare for pageants. They didn't care what kind of school I went to or what my first language was, but they were very patient with me and helped me learn to communicate in my new world. All they wanted to do was welcome me to a group they said I belonged to as well, and although I felt different at times as I was still learning the language and the culture, I never felt out of place.

Even though I've since moved to Texas I've never forgotten the kindness I received during those years or the friendships I made. That's why I was so disappointed for the people of Nashville and Tennessee when a situation came to light this past week that seemed to strip them of any dignity or pride they might have in an organization they'd come to rely on and believe in over the years.

The League for the Deaf and Hard of Hearing (LDHH) a non-profit in Nashville recently merged with the EAR Foundation in Nashville. I honestly do not have all the details myself yet, but I am doing my best to find out along with the rest of the deaf community in Tennessee. However, since the two merged LDHH and EAR Foundation has now been renamed by the board as HEARING BRIDGES. Tsk. Not Deaf Bridges... Not even Deaf & Hearing Bridges... Just HEARING Bridges. Personally, I'm stunned. Someone dropped the ball. What did they think? This was catchy? No one would miss the word "Deaf"? What a slap in the face to those this organization has spent decades serving.... and to add insult to injury this name was revealed with great show at an event in front of many deaf and family members who waited expectantly after having read this exciting tidbit on the LDHH blog... "Since our merger with the EAR Foundation last September, the board of directors decided to change the agency’s name to reflect more accurately the folks we serve and the programs we offer." (See for yourself at http://hearingbridges.org/blog/ ) This is an organization that claims to bridge the deaf, hard of hearing, and hearing communities by mostly providing services to the deaf, and this is the name the board felt BEST described the wonderful work done there? Ugh. This is like taking a Martha Stewart cake out of the oven and letting Oscar the Grouch pick out icing from the bottom of his trash can to top it off. Lovely.

I hope the deaf community in Tennessee is heard loud and clear and with eyes wide open by this wonderful organization of EIGHTY years. I hope the media responds to their requests to be heard and seen and understands why this name is so demeaning and runs with it. I also hope everyone remembers this was a decision made by the board members and not the staff, and that is where grievances should be placed. People on Facebook can show their support or participate in discussions by joining the group "People opposing the new name HEARING BRIDGES instead of LDHH".