Advocating Again

Every since I moved here Ken wanted to go see the annual play Saturday’s Voyeur filled with humor at Utah’s expense.  I wasn’t too thrilled about going because I knew I wouldn’t understand so he let it go these last 7 years.  This year he saw the poster/cover and really wanted to go.  I said I’d give it a try even though someone else told me the assistive listening system there wasn’t that good.

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Ken bought tickets in the front row in hopes what I could hear and lipreading might combine to make a good experience.   We went in a few days early to see what kind of listening system they had which was FM.  They didn’t have neckloops available, only headphones but hey, no problem!  I’ll bring my own amplified neckloop.

We showed up and they had the FM system right there to pick up as they took our tickets.  We sat down among others with ice chests, pouring wine for each other or cracking a beer.  Some people made it a picnic showing up with salads, meals, crackers and cheese.  I settled in plugging my neckloop into the portable FM receiver, got my own glass of wine and looked around.  It was a small stage and we were almost center of it.  Music played in the background, a band was just visible behind a stage curtain and people were talking all around us above the music.  I looked up and saw 4 little mics hanging from the ceiling above the stage.  Uh oh, the actors were not individually mic’ed and they were a good 4 feet above their heads.

I turned on the FM system and couldn’t tell the difference between what my hearing aids were hearing and what was coming across the FM system through my telecoils.  I had a bad feeling about this.  Ken said (I could barely hear him in the noise) it would get better when it started up and the audience quieted down.  Maybe.

The lights went out and the audience did quiet down nicely.  I went into the FM system and could not understand a single word.  I went full volume and still couldn’t understand anything and that’s with my 15 decibel gain neckloop.  I stayed with it for about 20 minutes hoping I’d get used to the sound and start understanding more but it didn’t happen.  I took it all off and went into my regular hearing program.

To help things along I switched it my extreme focus forward program and actually heard better that way than through the FM system.  That’s the first time in my life I’ve ever tried an ALD (assistive listening device) and heard worse!  Voices were clearer with my hearing aids and I could snag a word here and there but still not enough to understand the play darn it.

Lipreading?  Not possible either.  Acting on stage involves a lot of exaggerated facial expressions which distorts lipreading.  Then they started to sing and I didn’t even know this would be a musical play and singing further exaggerates lip movements and I understood none of the lyrics.  When multiple actors are on stage they often block one another and there’s fake beards to try to lipread through (not easy), masks and even one character talking into his hat.  They turn their heads this and that so lipreading was a failure of sorts too.  Occasionally I’d snag a whole sentence when circumstances were just right but not enough to make sense of anything.

The play had some visual characters and even though I couldn’t understand much of what she said, I loved the pink wigged fairy godmother character with her facial expressions and wand.  Some of the antics were visual enough I could laugh at that but not often enough and I wished like hell I could hear the words too.  Too many times there was jokes I didn’t understand and it’s such an isolating experience to sit in the midst of a laughing audience.

There were three acts, two intermissions.  During the second intermission I was posting to Facebook about my experience when the lights went down. I continued to post.  Ken said, “It’s starting, put your phone down.”

I kept writing my post so he elbowed me.  “Put your phone away, you’re missing it,” he told me.

“So what, I’m missing it anyway, ” I told him.  “You just want me to put my phone down because you think it’s rude.”

“It is rude, put your phone away.”

I finished my post and put my phone away.  Since the play was going on I didn’t bother telling him my thoughts which were:  It’s rude to advertise an assisitive listening system and have it be completely useless.  What about how rude that is to me?  It’s a big fat tease and it’s lucky I didn’t break down crying.

Instead of watching the third act I started watching the audience to see who else might be hard of hearing.  I spotted 6 people.  Two men were faking laughter and how do I know that?  Because their laughter was always delayed, it came well after everyone else was laughing.  I saw 4 other people who were sitting there like me not laughing at all and I’m going to assume they were hard of hearing too.  They could have been offended but they didn’t fit that image with a beer or glass of wine in hand.  Had they tried the listening system before and gave up?  Did they even know one was available?  Why don’t they offer people the ALDs as they come in?  Maybe our ALD sign is too obscure, maybe we need to add words and or posters to explain what’s available.

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How are people supposed to know what this means?

Instead of going to tears I thought of what I can do to make it better next time.  Get CART?  Try to get to a hold of them so maybe I can read the script and talk to them about their useless listening system?  Maybe this is just an opportunity in disguise. I really liked the theater and the casual atmosphere and wouldn’t mind coming more often but things would certainly have to improve before that can happen.  It sure made me appreciate Vicki of Turner Court Reporting and Captioning Services all the more for doing captioned Broadway plays for us not that I didn’t already highly appreciate the service.

The next day I wrote into the Salt Lake Acting Company and did get a reply back.  Things are busy so she asked me to pick dates to come in and read the script and to talk about the listening system.  I’d love to read the script, even after the fact, so that I finally know what everyone else was laughing at.  It looked like such fun.  I’m waiting to hear back.

Sometimes we have to go and fail first before we can set things straight.  This was one of those times.  It was a fail but I’m proud of myself for not letting myself get so upset over it all.  It happens and it may be an opportunity, a hearing loop in there would be so awesome.

25 Years of the ADA

On July 26, 1990 the American’s with Disabilities Act (ADA) was signed into effect and we are celebrating its 25th anniversary next month.  We acknowledge this important event in history with pride because it empowers us with equal rights by removing barriers.   For 25 years it’s been there for us but are we exercising our rights and using the ADA as much as we could?  If not, why aren’t we using it more often?

Although many people know of the ADA, they may not be familiar with it enough to use it.  If that’s the case visit the many websites and blogs online to learn more about it, get acquainted!  Occasionally a workshop or meeting is offered in hearing loss communities regarding the ADA, go to it.  It may take a few times to understand it but keep going until you do and just so you know,  you don’t have to know it word for word.  The more familiar you are with it, the more comfortable you will feel using it.

Finding support is essential for journey in learning to request accommodations, especially if it’s your first time exercising your rights.  You can find role models at support groups to ask for help or get recommendations on how best to handle the situation.  Having cheerleaders on your side will encourage you to keep on keeping on.

My suggestion is to start small to build confidence.  Advocating with your family first, then with people you meet you meet while out and about.  You will find out most people are willing to help but often don’t know how.  Be prepared to educate people but have the right attitude; be tactful and not demanding, teach but don’t lecture.  Learn to compromise when needed.

Pick a “project” you are most likely to win but don’t expect instant success.  Businesses, schools and government agencies will often fight against accommodations.  The ball will go into both courts several times and push may come to shove, however, remain polite through it all.  You will most likely get frustrated at some point but do not give up; the law is on our side.  If you are unsure whether or not it’s right to pursue the accommodation, you can find free legal advice on the internet or maybe within your own community.  The state Deaf and Hard of Hearing Center here in Salt Lake offers free legal advice with an ADA lawyer every so often.

This is what the path to success really looks like.

This is what the path to success really looks like.

Don’t be afraid to use the media in promoting your cause.  Remain diplomatic while leaving comments on Facebook and internet pages.  Write a letter to the editor or see if a reporter would like to take on the story.

Sometimes we may have to fail first to prove the accommodations weren’t effective, don’t give up.  Sometimes we may have to compromise, don’t give up. Other times we may lose all together but we don’t have to accept it as a defeat.  We can learn from it and try a different approach next time.  It’s a journey and no matter what, we are moving in the right direction.

If we all pecked away at this accommodations for the Deaf and Hard of Hearing would become more common place, making it easier and easier for the next time and the next person.  Let’s use the next 25 years of the ADA to further our accommodations creating an equal environment.   Working together we make it happen.  Are we worth it, you bet!

My teeth hurt if there’s too much NOISE

We’re supposed to wear our hearing aids all day long but I admit, I do not.  If I want to concentrate on something like writing, it’s a lot easier without a bunch noise coming at me.  If I’m just around the house, I probably won’t wear them either unless I’m having a bad hearing day.  If I’m in a noisy situation I most definitely do not wear them.

I teach a class for work called Hearing Aids 101.  The current class is at a senior center and it seems audiologists do not educate their clients about hearing aids. I’m not sure if they think they can’t handle the technology or they don’t have enough time, maybe some of both.  A few have worn hearing aids for years, a few have hearing aids and won’t wear them and some are about to buy their first pair of hearing aids.

One lady who wears hearing aids said her audiologist told her to wear the hearing aids all day long to get the brain used to sounds again, to reconnect those pathways in the brain.  “Yes!” I tell her, “Good girl” basically.  But noisy set situations set my teeth  on edge I explain. I have a bad habit of clenching my teeth when stressed out and this includes too much incoming noise.  Sometimes I don’t realize the noise it too much until my teeth start hurting.  Then I back off trying my comfort program first and if I’m still clenching my teeth, I take them out.

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In all these years I’ve never gotten used to noisy environments and hearing aids.  I’ve seen people at concerts with hearing aids in and cringed.  (By the way that’s not protecting your remaining hearing very much.)  Market Street Grill ( a local eatery with wonderful food and horrible acoustics) came up during this class when too much noise was mentioned.  Each time I’ve been there I’ve taken my hearing aids or not worn them at all.  We rarely go to eat there because of it.

It’s a noisy world out there. I’m wearing my teeth down walking down the road, when lawnmowers come out and I clenched my teeth continually when I worked in the salon.  Public bathrooms are worse than ever  now  thanks to those super air dry screaming machines (I’d rather wipe my wet hands on my pants). There’s someone who lives in the neighborhood with bass boom box in their car even I can hear coming from down the street.  Someday sooner than we think the majority of the people will be hard of hearing rather than the minority.  Then the world will change in our favor.

Accessibility and Creating Accessibility

Today I have two events.  The first one, The Broadway play Once, is accessible fully accessible thanks to captions by Turner Reporting and Captioning Services. Knowing there will be captions makes it stress free event.   I also watched the movie on DVD the other night so I have the story line down which I hope helps me relax a little more at the play.

Once

Once

A great addition is Kingbury Hall provides an FM assistive listening system with a neckloop.  Through that I hear more musical pitches and catch some dialog.  This makes the whole experience all the better.

Later tonight Ken and I will attend his ski patrol banquet.  This event has no accessibility other than what I fix up myself which requires thinking ahead.  I’m charging my FM system right now and we need to show up a little early with masking tape and explain the circumstances though I’ve attended the annual event enough I’m sure they remember by now.  We then tape the transmitter to the microphone.  It’s not as good as having captions but usually I hear as well as, if not better, than the hearing people there because of the bad acoustics.

FM system

Preparation

For this event I will swap out my Siemens for my old red Phonaks which have the FM receivers built in.   I had the receivers built in because my hearing before the Phonaks had FM sleeves to slip over my hearing aids and one of them had a weak connection.  It took years to figure that out.  Since it was my first FM system I thought that’s the way FM systems were, they faded in and out. The audiologist I got my hearing aids and FM system through didn’t know much about the FM system and suggested I read the instruction book. (I can’t remember if I ever took the time to do t hat.)  By some weird chance one afternoon I pushed the sleeve up into the hearing aid  and found out it stayed consistent.   That was a big ‘duh’ moment.

Phonaks with FM receivers built in.

Phonaks with FM receivers built in.

When I got my Phonaks I insisted on having an FM system built.  The hearing aid dispenser asked me a couple of times if I was sure because it would make them ‘bigger.’  If I didn’t care about having bright red hearing aids why would I care if they were a little bigger?

Accessibility can come ready made and I can also create it at the typical events.  I’ve learned a lot over the years.

Decorating My Hearing Aids

  My last pair of hearing aids were bright red and I loved them.  I loved taking them off to show people and sometimes that shocked them.  No one shows off their hearing aids…except maybe me.

Weren't they great?

Weren’t they great?

Now I have a new pair and since they weren’t in wide release at that time (last summer) I got boring beige.  You have no idea how hard it was for me to accept that after having bright red ones.

So I got red ear molds.

So I got red ear molds.

That’s helped a little and I like that people can see them in my ear and know I’m not trying to hide them but I don’t take them off to show them to others very much.  Boring, boring beige.  Blah.

In talking about this on my SayWhatClub list, another member started blinging her hearing aids and you can read her post about that here: Does Blinging Mean Acceptance. Of course it does and I like that she does this and shares her finished product.

I had such troubles getting my hearing aids adjusted and working properly that for a long time I didn’t care they were boring beige.  I didn’t feel like talking about them anyway but once they were finally working (thanks to a new set of ear molds) I became a lot happier with my hearing aids.  Now I want to show them off so I wrote my friend and asked her for help.  She sent links:

And I was off!  My mind whirled with possibilities and I started looking for nail foils and later fun tapes.

My first try was an attempt, getting used to my hearing aids.  For the first time ever, my behind the ear type of hearing aids are smaller than ever thanks to the receiver being in the ear but this makes blinging them difficult.  They are tiny and it’s hard to work around but not bad for a first try.

20150316_92The foils  had a very acrylic smell to them while applying the.  They stayed on well, too well, and only later when I re-read things did I realize this is the wrong kind to get.  They aren’t peel off kinds but I guess polish remover foils.  I can’t use that on hearing aids so I destroyed several finger nails scraping it off hoping I didn’t ruin anything. I didn’t.  I tried another set of foils I bought and they were the peel off kinds, thankfully.

Friends said they looked like candy corn.

Friends said they looked like candy corn.

Weeeeeeeee!  St. Patrick’s Day was fast approaching so I went out looking for colorful tapes.  I couldn’t find straight green and the closest I could get was white and green tape from the scrap-book section of the craft store.

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This certainly isn’t the best look for them and it clashed with my hearing aid molds.  People said it was more Christmas like instead. If I had known I was going to have this much fun decorating, I might have gotten clear molds so it wouldn’t clash so bad with other colors.  The tape peeled up faster which in a way was good since I was eager to move on.  This project did get me used to decorating on my tiny hearing aids a little more but I still had big ideas.

I post my new decoration projects to Facebook and we discussed the different tapes and duct tape came up.  I know there are many great colors and patterns on duct tape but another friend posted, “Take it from a drag queen, don’t use duct tape as it leaves a lot of goo to clean up.”   Darn but yes, I will take his advice.

Swinging back to red, I tried the red masking tape and the Duck Tape, metallic stars, I found near the yarn/tie dye section of the craft store.  (No, I don’t why they had tape there too.)  The Duck Tape sounded too much like duct tape and sure enough, it was a lot stickier than the masking tape.  In my mind I see all kind of design possibilities but it’s so hard to fit my ideas on my tiny hearing aids.

aids red and metallic

That’s more fun and it matches my molds again.  The masking tape worked pretty well, the metallic tape, not so much.  It is stickier and it’s also stiff which doesn’t allow for the contours of parts of the hearing aids.  The red is sticking well to the hearing aids but the metallic tape is coming off a week later in my hair but that only means it’s time to decorate again!  Practice, practice, practice.

Captioned Plays and Friends Connected

The hearing loss world is a small world…a small, warm and friendly world. Being involved with my local HLAA chapter and the SayWhatClub has put me in touch some of the neatest people all over. Sometimes I forget about those connections and then something comes along to remind me we are all connected.

Last November I went with four other local hard of hearing women to to see the season’s first captioned play, The Grinch. The captions allowed me to ‘hear’ everything which means I laughed when everyone else laughed feeling included. I loved the Grinch’s dark sense of humor, this wasn’t just for kids. His outfit was awesome and his gloves kept me visually entertained alone, I would love having a pair of those long, hairy green gloves. I didn’t expect to enjoy it as much as I did and I couldn’t have without the captions.

How The Grinch Stole Christmas

After the play we got together with our captionist, Vicki Turner, for dinner. The whole group talked about hearing loss issues and every day life. At some point I asked Vicki for her card because the SayWhatClub might be able to use another caption name for their conventions. I carried away that high feeling I get from being around my tribe that night.

Kingsbury Hall with Mamma Mia!

Kingsbury Hall with Mamma Mia!

Yesterday was my second captioned play of the season, Mamma Mia! with Vicki at the helm with captions to guide us through another play. Once again I found myself laughing in time with everyone else in the theater. I expected ABBA music yes but I didn’t expect the story line since I hadn’t seen or read anything about it, a woman who saw three guys in one month and wound up pregnant? In the play Donna’s daughter is getting married and she knows nothing of her father. So the daughter gets ahold of her mother’s diary to find three names and invites them all to the wedding without her mother’s knowledge. I followed the story thanks to the accessibility of captions once again.

Vicki Turner

Vicki Turner

Not only did we have captions but a friend advocated for assistive listening devices for us and we each received a powerful neckloop from Listen Tech to try out. This time I could hear the music better and more of the words especially the male voices which added to the joy of the play. Although I could understand more than usual, I depended on the captions to carry me through the jokes and song lyrics. It creates a warm, welcome feeling when the theater wants us to hear and understand the play like anyone else.

During a slow song with little action I found myself watching Vicki instead of watching the play or captions. She sat straight up, leaning toward her laptop with fingers on her laptop. She appeared to be timing the captions to the play the whole time. Her stenography machine sat off to the side unused. That’s why I could laugh in time with everyone else. Usually with captions there’s a short delay but not this way. The song ended and I went back to the play, who is going to be the father? I won’t ruin it for you.

We all went to dinner afterward, which is as good as going to the show, and I had more time to talk to Vicki this time. The plays are scripted into her computer and most of the time she is timing the captions to the play. I asked her if they ever went off script and yes they do sometimes, like she had to add an announcement with her stenography machine about the university art grants before Mamma Mia! started. The Grinch goes off into his own dialogue while wishing every one a merry Christmas and she knows this so she’s prepared when it happens. If she hasn’t seen the show, she will watch it one or two times before captioning it.

She travels all over captioning plays and her next one will be in Sacramento. She will be back in Salt Lake for us to caption “Once” and I will see her again in San Antonio in May. That’s where the small, hard of hearing world comes into play. She went on vacation to New Zealand and asked a Facebook only friend, where to stay and what to see and the FB friend, with a big heart, invited her to stay with her. This FB friend is a part of the SayWhatClub and she talked about the upcoming convention. Vicki remembered me, contacted my boss, who put her in touch with me via email. Vicki wanted to offer her services to have a captioned play, Newsies a Disney musical, at the Majestic theater while we are there. And it happened! We’re going to have a captioned play while in San Antonio.

Sometimes I get bummed out about hearing loss issues, then something like this happens and it warms my heart all over again. Thank you Vicki for getting into captioning and for all the things you do for the hard of hearing community. It’s truly appreciated.

She may be able to help you caption a Broadway play in your area. If you want to learn more about her, go to http://www.turnerreporting-captioning.com.

HB112 at the Capitol

The Utah State Capitol

The Utah State Capitol

This morning I went to the state Capitol to show support of HB112 which went before a senate committee this morning.  This bill would make all hearing instrument specialists tell their clients about assistive listening technology available when people come in to buy hearing aids.  So many people end up paying big bucks for basic hearing aids without all the options and it drives me crazy.  This bill should help better  inform people right off the bat.  The bill passed the committee this morning and will move on to the Senate floor within the next ten days.

I’ve learned to advocate for myself personally, slowly but surely over the last 6 years especially.  That’s because I started going to local HLAA meetings and hanging out with other people who already advocated for themselves.  Now I’m learning to advocate, slowly but surely, on a bigger level and I’m learning by hanging out with these lovely ladies.

Show of support for HB112 at the Capitol this morning.

Show of support for HB112 at the Capitol this morning.

It is exciting to watch HB112 and learn the workings of getting a bill like this passed.  I’m gaining more knowledge.