Requesting CART, again

On February 10th, I wrote our local writing center, which is sponsored by a local community college, asking for CART for a May workshop they are offering.  (Click HERE to read my post about that.)    I heard back from the manager of the center a few days later saying it would take time to get things together  and I might hear from others.

A few weeks ago, I started wondering when I might hear from these other people since it’s now a month away.  I emailed once again and got a very confused reply which said something about placing me.  Did that mean CART would be available?  A few more days have passed and no word.  Am I getting the run around in hopes I forget it or don’t follow through?  I’m not going to let that happen.

Tonight, I sat down and sent another email and this time I included the college disability center.  I’m don’t want to be threatening at all but I am going to push my point.  If I don’t, who will????  We the hard of hearing deserve equal access.

accommodations

Here is the email I sent out (minus names and specific details)….

 On February 10, I wrote the college writing center asking for accommodations for the upcoming workshop on May 1 and 8.  I wrote way back then so there’d be enough time to prepare for CART (real time captioning) for the workshop.  The last workshop I attended I could not participate in it even though I brought my personal FM system and asked for an outline.  The acoustics in the room were so terrible it wrecked whatever advantage my hearing instruments gave me.  (My original request will be sent after this email.) 

  I moved away for a bit and now that I have moved back, I’d like to attend your workshop but I need accommodations to do so.  When I wrote in early February, I had hope this would be resolved by now but I can’t help but feel I’m getting the run around after the last confusing email.  I’d like to think an interpreter would be provided if a Deaf person came in.  I’m not Deaf unfortunately and not fluent in sign language which is why I requested CART.
  I know the college provides CART services so I’m wondering why this is such a problem.  It’s also mind boggling that the center offers a publication on human rights inviting people to write for it and another workshop/writing group called on writing for change. It would seem the center could be open to change and accommodations.
  Their mission statement reads: “The Writing Center supports, motivates and educates people of all abilities and education backgrounds who want to use writing for practical needs, civic engagement and personal expression.”  Does this not include people with disabilities?  With hearing loss?  Is there equal access here?
  My first email brings up the American Disabilities Act (ADA) which you may re-read after this.  My goal here is not to be mean, to fight or argue.  I simply want to attend the workshop with equal access.   As soon as I know I will be accommodated, I will come down to pay the fee.
  Thank you for your time.
questions?
What do you think, did I do okay?

Life Without Hearing Aids

A few weeks ago my left hearing aid quit working. It’s four years old as of last January and the warranty ran out two years ago. According to my audiologist office, it’s going to cost at least $300 to fix it with a warning that it could be more. For this low income girl, that’s a lot so I made an appointment with my state vocational rehabilitation office. My goal, to send both hearing aids in, one for fixing and the other for conditioning.

People are telling me, “Get new ones!” I really don’t want to. I really like my bright red hearing aids, these hearing aids have a FM receiver built into them so I didn’t have to mess with sleeves/boots. My pretty red hearing aids are only 4 years old.

Then there’s an echo of audiologists saying, “They are only good for about 5 years anyway.” Really, why? “There’s big improvements in technology within that amount of time.” Is it really that big of a difference from what I have now? “Oh yeah, I never have clients say their old hearing aids were better. They always like the sound better with new hearing aids.”

In my experience going from analog hearing aids to digital was a HUGE deal. I will never look back at analog. Until that big of a change comes around again, I can’t see that there will be that big of a difference again. There might be nifty new programs but I have 4 different ones now and I don’t know what else I could possibly want except perfect hearing again.

And my hearing aids were $4,500. That’s a lot of money to shell out and it doesn’t feel like so long ago that I paid for these. I know people who have had their hearing aids for 10 years and they are still happy. I want these hearing aids longer than four freaking years. The longest I’ve had a pair of hearing aids was 6 years and those probably would have lasted longer except one got run over multiple times at the long row of drive style mailboxes. (Took a phone call in the car when cell phones weren’t compatible with hearing aids then forgot it was in my lap when I jumped out of my low to the ground car to check mail.)

That was in 2005 and the last time I had to go without working aids. I worked in a salon and I tried wearing the remaining hearing aid but it felt so lopsided it wasn’t that helpful. I spent around two months not talking while my blow-drying hair, spinning people in my chair to face me or learning to read lips in the mirror. My clients had to repeat often. It was awkward and forced me to be upfront with everyone about my hearing loss. We were all relieved when I got my new, first pair of digital hearing aids. After that, I had no problem telling people I couldn’t hear well.

This time I work in the state Deaf and Hard of Hearing Center which is the most accommodating environment I can possibly work in. I thought I’d be okay without hearing aids as I didn’t wear them all the time anyway but I find myself missing them. A lot. I work at different health fairs around the valley sharing resources the state offers for those who are Deaf or hard of hearing and it involves a lot of talking even if people are in denial about their hearing loss. I thought I’d get by with lip reading and my remaining hearing. Nope! It was tough because some people just can’t look at me while they talk and others don’t move their lips enough. Luckily our table display offers ALDs such as the PockeTalker, Mino and Duett for people to try out. I grabbed the PockeTalker and started using it. The chatting proceeded a lot smoother after that and it also got other people trying it out. Thank goodness for ALDs!

PockeTalker

PockeTalker

Then I went to my first meeting without hearing aids in a long time. I had an ache in my chest as I walked in. I knew I was going to miss my hearing aids here too. The meeting was at work and a FM listening system is available but this time they had a new system in place with fabulous neckloops…and I couldn’t use them. I was able to plug in my earbuds but it wasn’t the same. I survived the meeting missing some conversation all together and concentrating so much that two hours later I was tired. I wanted nothing more than a glass of wine and to go to bed after.

Comfort Contego

Comfort Contego

With my boyfriend’s ski patrol banquet dinner coming up at the end of the week I started to worry about not being able to hear. I talked to my boss, the hard of hearing specialist, about borrowing one of their FM systems to use so I could hear the speeches. I have my own personal FM system I used in the past for this event but it’s a one piece deal that won’t work without my hearing aids. She suggested the Comfort Contego with two pieces and let me borrow it for the duration of my hearing-aid-less-ness. At the banquet, we arrived early to set it up, using medical tape (less sticky) we taped it to the microphone. Viola! I could hear the speakers with my normal 50% word discrimination which was nice because my boyfriend received a couple of awards. The system cut in and out often and there is no treble/bass adjustment. I need more treble so it all had the same deep pitch. I don’t want to complain too much though. It helped, I got through the speeches and I felt connected to the event.

Patroller of the Year award

Today I sat through another three hour health fair. This time I used the Contego unit instead of the PockeTalker. It was held in the gym which is usually horrible acoustics but they had acoustic panels on the wall cutting some of the reverberation, hooray! I was so happy to see them. Once again, it presented plenty of opportunity to talk about ALDs.

comfort contego and me

These panels helped cut back on reverberation in the gym.

These panels helped cut back on reverberation in the gym.

The last two weeks made me realize how much I depend on my hearing aids, how much I need them and how much they help. Having something programmed specifically to my hearing loss makes a big difference in my understanding speech. I wrongly thought I’d get by fine without them but now I want them back. Using a neckloop to headphones makes for even better hearing and I miss it all.

Sigh. My appointment isn’t until the 28th of this month and that’s just to get things started. After that, it’s waiting for approval and if I get approval then sending my hearing aids off to get fixed. It’s a process. I’m going to be one very happy girl to get them back.

Between the Worlds

by Chelle George

A few weeks ago, I watched the 2000 documentary Sound and Fury for the first time.  It starts out with a little girl, Heather, from a Deaf family who wants a cochlear implant (CI).  Through the filming it appears she was talked out of it and the family  moved to a Deaf community in Maryland.  Instead, her newborn cousin gets a CI. Sound and FuryThirteen years later, here is Heather Artinian doing a presentation for TEDx.  She went ahead and got a CI 3 years later for reasons she discusses in her video (link at the end of the post).  She’s doesn’t regret it and in fact gets another one later on.

In the video, she talks about being on a bridge between the Deaf and hearing worlds.  She’s there to fill the gap between both worlds.  She’s not alone on that bridge, there are lots of us there but most of us are invisible.

Her presentation is easy to relate to even though she comes from a strictly Deaf world.  Many of us come from a strictly hearing world but we’re all on that bridge together.  There are things we too can do bridge that gap.

Take a look at her video and feel free to comment here.

The Heather World

Hearing Aid Out

At the beginning of the month, my left hearing aid started cutting in and out.   It happened just in time for the USHA conference (Utah Speech-Language Hearing Association) where Loop Utah had a table.  I was behind the table volunteering hoping to hear enough to talk to people and through the counter loop we had set up there.  Of course my audiologist was attending the conference too so I couldn’t rush in to see him.  I found out if I took it out of my ear and shook it, it would go back on for a little while again so I spent two days shaking my hearing aid.

Then it started working proper again.  I wanted to change my programming around a little so I made an appointment with my audiologist anyway.   We changed the batteries in my hearing aids for the programming and guess what happened?  The left hearing aid quit working again.  Talk about timing!  That almost never happens at the perfect time.

So he shook my hearing aid too (I had to smile seeing that).  Nothing.  He went into another room to clean out the battery area which had a rubber seal to it making it water resistant.  My hearing aids are about 4 years old and the rubber wears out, turning to goo with sweat and moisture.  It worked again but he warned me that might not be the problem.  If it happened again, he’d have to send it out.

I walked out of there with a functioning hearing aid and it worked well for over a week. Then it stopped.  No amount of shaking it would make it stay on for any length of time.  It’s time to send it in, darn it.

I do not like wearing only one hearing aid.  I feel out of balance with one ear hearing strongly and the other on mute.  I went to a meeting on Saturday and it was in the looped room at the Sanderson Center.  With only one ear working, even with the loop, it was awkward.  Thanks goodness for CART.  Until my hearing aid gets fixed, I doubt wear just the one.

Today I’m subbing a Living With Hearing Loss class for a friend who can’t make it.  It’s the kind of event I wear hearing aids at.  This will be interesting!  At least I’m taking ALDs so I’ll use one myself with earbuds.

ALDs at the Library

In February I went on a advocating frenzy, tired of feeling left out and feeling for anyone else who felt left out. I requested CART for a writers workshop I want to attend in May, requested an ALD at the downtown library for a reading from local authors and left comments on news sites in regards to hearing loss. There’s a Paulo Coelho quote: Life has many ways of testing a person’s will, either by having nothing happen at all or by having everything happen all at once.” Right after I posted about my advocating adventures, life erupted and picked up speed. I had a hard time keeping track of what all I had to do, where I had to be and when. This is why I haven’t posted much in the last month. I think things are slowing down again and today I have time to update everyone.

I haven’t heard anything in a while from the writers workshop and they warned me it might take time. I marked the February reading down on my calendar wrong at the library missing it last month. I was so upset with myself because the library was so accommodating with my request. I contacted them as soon as I figured it out, asked them to forgive me and told them I’d like to try again in March. This time I made sure I got the right day on my calendar (in a red Sharpie) hanging in the kitchen and set two alarms on my phone to make sure I made it.

Last Thursday, I went to work a little early so I could leave early with plenty of time to get there. Right after leaving work, I grabbed a quick burger and drove to the train (light rail) station. I could have driven downtown but I do not like messing with parking. I just missed the train by a few minutes so I had to wait 15 minutes for the next one. Once on the train I realized I’m running behind and will just make it on time in spite of leaving work early. Dang. The train lets us off right in front of the library so I dash out, jog across the street and into the library. Instead of waiting for the elevator I ran up the four flights of stairs which left me winded and barely able to ask for directions to the meeting room at the information desk. My biggest fear is the tech guy is going to give up on me and I do not want to mess this up a second time.

By the time I arrived at the meeting room, I nearly had my breath back. I looked around and couldn’t tell who it is I’m supposed to meet. There’s a cluster of people talking and no one pays much attention to me. I had a moment of panic, am I too late? As I scan the room once more a nice looking man sitting on a table says, “Chell?” I tell him “ChellE” and we shake hands. Whew! I made it.

He takes me to a table set up in front of the room with a portable FM system (I think that’s what it was) and hands me a receiver. Everything there looks brand new. As he takes out a “hanging on the ear” model earphone.

hanging on ear headphone

“You can put that back,” I tell him. “That won’t do me any good with my hearing aids. I need my hearing aids to hear better. We’ll use my neckloop instead.” Thank goodness I remembered to put my amplified neckloop in my purse, just in case, before leaving the house that morning. That thing wouldn’t have helped me at all. One ear, seriously? I need everything I got from both my ears.

“Will that work with this,” he asks.

“It should,” I said. I plug it in, hoping neither my neckloop or his receiver goes up in a puff of smoke. It fit the jack so I assumed it was safe.

“Let’s test it,” he said walking to the microphone. “By the way, I’ll tell everyone to make sure they use this tonight.”

“Thanks!”

I switch to the t-coil program and he starts talking into the microphone. The sound is good. In fact the sound is way better than I ever expected it to be. I’ve been to places with bad FM systems where voices come and go or the batteries aren’t charged or the sound still seems distant to my ears. Even my personal FM system doesn’t give me that good of a sound. I give him a thumbs up and tell him that it sounds wonderful.

Back in front of the table he tells me he’s aware of the new ADA requirements for assistive listening devices to meet the needs of people who wear hearing aids. He heard of the neckloops but wasn’t sure what to make of them. After seeing mine, he said he’d probably go ahead and order some now.

“I get better sound quality out of neckloops than I do headphones,” I tell him. “I get even better sound through permanent loops. It would be awesome if you could install one here somewhere.” He’s heard of hearing loops and said something about funding.

“I heard of a grant you can apply for, especially for libraries. I don’t have the information on me but I can email it to you tomorrow.”

“That would be great for the auditorium,” he said. “I’m interested.”

“You would be the first public venue to have a loop and I’d sure advertise that in the hard of hearing community. We’d love it.” Conversation continued for a few minutes, he left and I sat down. Great! I made a good contact at the library in spite of last months screw up. I’m happy.

Their receiver and my fancy pants, lol.

Their receiver and my fancy pants, lol.

Soon the readings started and without too much effort, I could hear very well. I’m so used to lip reading it’s a habit so I turned my head to see if I could still hear and I could follow along mostly (I’ll never hear every word). At this point I notice there’s a great sunset going on as I stare out the glass walls from the fourth floor. The sky is going baby blue and the scattered clouds are lighting up silver. The sun is reflecting off some of the building windows and the city takes on a whole new look. I watch as the colors of the sky change to a darker blue with pink clouds and totally forget I’m listening to a reading. I wondered if it would be rude to get up and take a picture. Probably. I look back to the reader to put my mind back on the Nintendo murder story again. My mission tonight wasn’t the visual but auditory and even with my mind a million miles away for a few minutes, I don’t think I missed anything crucial as the story was still intact for me.

The readings went on for an hour and a half all together. I understand each story without notes and even if I miss a few words I easily fill in the blanks. After all, I’m used to missing a lot more than that. I’m not exhausted at the end of it so I know I wasn’t clinging to noise but hearing words. I’m smiling, pleased with myself for asking for an ALD. I feel like the world has suddenly opened up a little more. As I put my neckloop away and return the receiver to the table up front another library employee approaches me.

I forget how the conversation starts but I get to talk to her about the ALD system and thank her for having it available and I’m glad to know it’s there. I ask her if it would work in any of the rooms at the library and she says it will. This is wonderful I tell her and I’ll be sure to share it with the hard of hearing community and where I work, at the Sanderson Center for the Deaf and Hard of Hearing. She gives me her email because she’s interested in networking with us at the Sanderson. How we will work together, I’m not sure yet but I’ll find a way.

Usually when I leave an event like this, I feel drained of energy if not exhausted or flat out depressed from trying so hard to hear. This time I left smiling and full of energy. Options exist and I’m not as limited as I thought. All the library activities are open to me now, not just their books. What an awesome feeling!

Now if I’d hear something as uplifting from the writers workshop people.

Hearing Loss Statistics

Compiled by the National Institute on Deafness and Other Communication Disorders (NIDCD).

  • Men are more likely to experience hearing loss than women.
  • Of adults ages 65 and older in the United States, 12.3 percent of men and nearly 14 percent of women are affected by tinnitus. Tinnitus is identified more frequently in white individuals and the prevalence of tinnitus is almost twice as frequent in the South as in the Northeast.
  • Approximately 17 percent (36 million) of American adults report some degree of hearing loss.
  • There is a strong relationship between age and reported hearing loss: 18 percent of American adults 45-64 years old, 30 percent of adults 65-74 years old, and 47 percent of adults 75 years old or older have a hearing loss.
  • About 2 to 3 out of every 1,000 children in the United States are born deaf or hard-of-hearing. Nine out of every 10 children who are born deaf are born to parents who can hear.
  • The NIDCD estimates that approximately 15 percent (26 million) of Americans between the ages of 20 and 69 have high frequency hearing loss due to exposure to loud sounds or noise at work or in leisure activities.
  • Only 1 out of 5 people who could benefit from a hearing aid actually wears one.
  • Three out of 4 children experience ear infection (otitis media) by the time they are 3 years old.
  • Roughly 25 million Americans have experienced tinnitus.
  • Approximately 188,000 people worldwide have received cochlear implants. In the United States, roughly 41,500 adults and 25,500 children have received them.
  • Approximately 4,000 new cases of sudden deafness occur each year in the United States. Hearing loss affects only 1 ear in 9 out of 10 people who experience sudden deafness. Only 10 to 15 percent of patients with sudden deafness know what caused their loss.
  • Approximately 615,000 individuals have been diagnosed with Ménière’s disease in the United States. Another 45,500 are newly diagnosed each year.
  • Approximately 3 to 6 percent of all deaf children and perhaps another 3 to 6 percent of hard-of-hearing children have Usher syndrome. In developed countries such as the United States, about 4 babies in every 100,000 births have Usher syndrome.
  • One out of every 100,000 individuals per year develops an acoustic neuroma (vestibular schwannoma).

http://www.nidcd.nih.gov/health/statistics/Pages/quick.aspx

First Response

The downtown library replied to the email I wrote last night: 

This came from the director of library experiences:

“Thank you for sharing this information with me.  We do have ALDs available for use in our auditorium space.  The event on February 20 is being held in our 4th Floor meeting room.  I am including Aleko Campos, AV Specialist, in this response in order for him to confirm if we have portable ALDs that can be used outside of the auditorium to accommodate you.”

The AV guy wrote me an hour or so later:

“We do have a portable assistive listening system that I would be happy to set up for you. I will be there at the program on the 20th to make sure everything is working.”

Awesome!  Ask and you shall receive.  :-)

This event features a local author talking writing.  I also asked if I could reserve a seat up front for lip reading purposes or would showing up early be enough.

I think the Writing Center will drag it’s feet.  A month or so before my brief stay in AZ, I wanted to sign up for a class with CART and they told me they couldn’t do that.  I was going to argue with them about that but I moved instead.  So maybe this time I get to make my point.  After all, these classes are open to everyone, equal access.  They can’t say that if they deny me the opportunity to be there as well.

I’m not looking to be a thorn in their side, I just want to enjoy the options everyone else does there.

rights