A Hearing Loss & Late Deafened Blog

When Yin Meets Yang

In Coping Skills, Deafness, Hearing Loss, Partially Deaf, Support on December 14, 2017 at 5:38 pm

By Michele Linder

There are both good and bad things related to hearing loss, but the misconceptions that others⎯those who do not know what it’s like firsthand⎯have about it are something we who live with it every day have a responsibility to change.

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Reading a Hearing Like Me article, Being the Change: How to End Hearing Loss Prejudice, this morning made me think of my own life and the moments along the way where I felt as if I was doing my part to put a positive spin on living with hearing loss.

Do you remember the exact moment that caused you to turn the corner? That point when you went from accepting the negative of how others see you with hearing loss⎯sometimes we feel as limited as the wrong perceptions we encounter⎯to a more confident and better version of yourself and capability?

For me, it was a gradual, decades-long process. Each teaching moment pushing me toward who I wanted to be without my even knowing I was headed there, until something would happen to shine a light on the positive. I’ve written about such moments, and this article, from November 2014, was a memorable moment for me:

Be What You Want the World to See

Originally posted on the SayWhatClub Blog,
November 20, 2014
 

be who you want the world to see

You just never know… there will be moments when people cross your path at the exact time you need them, for the exact encouragement you are looking for. I’ve had this happen to me countless times in my life, and when it happens I’m always in awe of how the universe looks out for me.

Then, on the flip side, you just never know when your presence in another’s life will be just what they need at that moment. Those moments are just as awe-inspiring, they serve to give you confidence, and to let you know all of the struggling you’ve done to get to a better place can have value, not only for you, but also for others who are struggling and searching for answers.

Sometimes all that is needed is someone to cry with. Never underestimate the power of sharing tears and letting down your guard to show compassion. It means a lot no matter which end you are on.

One morning last week, I got up at 5:30 to leave the house in order to drive (an hour and a half) to Grand Rapids for an appointment with the Morton Building people to talk about some barn improvements I’m looking to make to our pole barn. The gentleman who handles our area of Minnesota seemed very nice via our email conversation, and upon meeting him I could tell he was very eager to accommodate my hearing loss, which I had made him aware of through our Internet correspondence.

Morton Man and I walked to his office and got down to the business of barn brainstorming.  During our meeting, there came a point when we needed to go out into the warehouse to look at some of the applications we were discussing. Talking while walking came into play, and, of course, when someone is trying to show you something and talk at the same time they tend to point at what they’re talking about. Pointing also means they tend to look at what they are pointing at, which is a train wreck for a lipreader, so the Morton Man kept apologizing for looking away as he pointed. I told him it was okay, as there is a learning curve, he would eventually get it.

The Morton Man paused, and I could clearly see he was collecting himself to tell me something personal. When he spoke, he told me our interaction was actually very good training for him because he had a 4 year-old granddaughter with a conductive hearing loss. As he shared her story, it was clear how concerned he and his family were for her and how emotional it was to see their beloved girl struggle to hear. This began a 15 minute discussion about hearing loss, how really debilitating it can be, but also how manageable it can become if you have the right attitude and tools. We talked at length about the information that was out there and how to go about finding that information, and I shared some of my own experiences with him, telling him how hearing loss does threaten to take much from you, but it can’t take more than you let it. At one point he actually broke down and cried and had to collect himself before he continued speaking. I instinctively gave him a hug and let him know that it was okay to cry, as hearing loss is very upsetting. Tears are common and very appropriate.

As we walked back to the office and began again talking about my barn, the Morton Man paused once more to say, “I have kind of a strange request… my daughter’s office is just a couple of miles down the street and I think it would be beneficial for her to talk to you and to see someone who is deaf and who handles it so well.”

I told the Morton Man, “Sure, I’d be glad to stop in and meet your daughter. We can exchange contact information and I can share some resources with her that might help her deal with her daughter’s ongoing hearing loss.”

Our meeting on barn matters concluded and I followed Morton Man to his daughter’s office. The daughter and I had a very similar conversation as the one I had had with her dad, as he looked on. I repeated some of the same information that I had given him and there were about three instances where the daughter teared up and had to compose herself, which, of course, made her dad break down. I held her hand or hugged her each time and then went over and hugged her dad. It came in handy that I come from a family of contagious criers… I’m pretty comfortable with tears.

We all exchanged information and I promised to email the daughter with some research results on groups she might join for parents of children with hearing loss and other information I thought she might find helpful.

The final thought I left the Morton Man and his daughter with was this: Make sure you instill in your granddaughter/daughter that there isn’t anything she can’t do because of her hearing loss. And when you come up against people who might discourage your girl from participating in something because she can’t hear, move on to the next person, and the next until you find that one person who says, “Let’s see what you can do.” If she knows she can do anything, believes it, and then acts upon it, it becomes true… she’ll be okay.

And their little girl will be okay… it won’t be easy, there will be challenges, but she’ll learn some good things along the way to carry into who she becomes as an adult.

Yes, you can be capable, confident, strong, and deaf.  I’ve learned that from people who have crossed my path at the exact moment I needed them, saying “You’re not alone, you’ll be okay.” I’m thankful for the opportunity to pay it forward on days when I’m able to be what I want the world to see.

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Advocacy in the New Political Landscape: A SWC 2017 Convention Workshop

In advocating, SWC convention on December 11, 2017 at 8:04 pm

by Chelle Wyatt

Our 2017 SayWhatClub Convention was held last August in Savannah, GA. We lucked out with better than average weather (not as hot as usual).  It rained some but that did not dampen anyone’s spirits! Daily group outings were available which included trolley tours of the city, a haunted pub walking tour, Mrs Wilkes Family Dining Room, the Olde Pink House (so many wonderful southern dishes at both places) and even a trolley/bus to take us to Tybee Island. There’s rarely a dull moment at our conventions.

Because of possible heat and humidity, we held our workshops in the afternoon giving our attendees the cooler parts of the day to explore Savannah; the mornings and evenings and it worked out great. One workshop I’d like to highlight today was one given by John Waldo, an attorney whose practice focuses on hearing loss issues.  He was our keynote speaker in 2012 at the Salt Lake City, UT SWC convention and he gave us a workshop at 2016’s convention in Boise, ID. While preparing the convention in Boise, we were having a hard time getting captions for a play at the Shakespeare Festival we wanted to attend. John was kind enough to write a letter to the Festival and we had captions!

listen tech logo

Listen Technologies sponsored John’s workshop, Advocacy in a New Political Landscape. “Listen Technologies brings power and clarity to the sounds that enrich people’s lives—with solutions that overcome the challenges of noise, distance, clashing conversations, and hearing loss to deliver precise and personalized audio in any setting or environment.” If you take a look at Listen Tech’s website you’ll find their support section is all about education, advocacy and support for those with hearing loss. They have been a great sponsor for the SayWhatClub conventions since 2012 and they are also dedicated to helping hearing loss support groups in the Salt Lake City area. Thank you Listen Tech for sponsoring John’s workshop in Savannah.

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Our workshops are captioned and have a hearing loop.

How does the current political environment affect those of us who are hard of hearing and deaf? The ADA (Americans with Disabilities Act) was created 26 years ago, intended to be a charter of rights for people with disabilities. John said, “The underlying idea was to get government agencies and places of public accommodation, which are essentially private businesses, open to the public. The idea was to create a situation where those people brought folks with disabilities into their businesses and made what they were doing accessible to everybody.”

Specific needs were worked out people with mobility issues but all they could do for people with sensory issues was map out generalities, nothing specific. “It requires in places of public accommodation to provide effective communication, unless doing so would be an undue burden.  It requires opportunities to participate that are equal to everybody else ‑‑ unless doing all this would bring about a fundamental alteration of what they’re doing.”

Federal agencies, courts and sometimes legislature decide what our rights are, however that can change as the government changes. During election years things can change a little or a lot, this year there were more dramatic changes. This workshop reflects the changes that affect people with hearing loss.

Last year the Department of Justice adopted regulations on movie captioning which requires all indoor movie theaters to convert to digital format and have captioning devices available by June 2, 2018. If they don’t have devices available, contact someone about it or let John know. The new regulations will not require open captioned movies under any circumstance which is a shame. John and others have argued with the Department of Justice on how much better open captioned movies are but they don’t understand that yet.

The second issue with the captioning/digital regulation is they made it only applicable to movie theaters; not museums, amusement parks or anything that shows movies that isn’t the main part of their business. John is afraid that museums and such will not caption their movies now, another shame. In the end, “we are happy with what we got but we don’t love it.”

What didn’t happen this past year? When the ADA was created in 1990, the internet didn’t exist. The Obama administration thought the internet should included in accommodations while not a public space in the traditional sense, it serves the public at large so captioning should be available on website. They proposed captioning on state and local government websites, going so far as to have people respond to 123 questions about captioning and blind accommodations.  Those propositions were not picked up by the current administration and put into a new “inactive” category. This is both good and bad, we won’t see anything happening in the next four or so years but then again, they aren’t taking it apart either. Unfortunately, texting 911 fell into this category also, which would have brought us into the 21st century.  

Private lawsuits might amount to better laws in the future. Three years ago a case was filed in Philadelphia by a Deaf-Blind man who wanted a tactile interpreter for a movie. They theater so no, the ADA doesn’t require that of us so we aren’t going to do that. The Department of Justice said they were wrong and had to provide effective communication unless it causes an undue burden. That case went up on appeal and is still pending. John checks on this case a couple of times a week because it has potential to help those of us who are Deaf and Hard of Hearing. *** It looks like this case has been settled since the SWC convention, here’s an article: http://www.foxnews.com/us/2017/10/07/deaf-blind-patrons-must-be-able-to-go-to-movies-too-court-says.html

To further demonstrate how things are flipping around, there’s another lawsuit against Coca-Cola saying their vending machines are not blind accessible. The lower court and court of appeals tossed it out saying vending machines are not a public accommodation. The Department of Justice at first said yes they are but with the new administration they have reversed positions and said no they are not.  

On ADA enforcement, nothing has changed so far. The enforces with the Civil Right and Disability Divisions are still hard at work with accessibility, some good settlements are coming out. There is no “benign neglect”, no harmful changes yet.

There hasn’t been a whole lot of activity in the courts so far this year. They’ve had good luck with websites to stores that are places of public accommodation such as a grocery store. Where business is strictly internet related such as Netflix, some courts say yes and some say no. There was a case against Domino’s Pizza with a blind man saying their website did not accommodate vision loss. Domino’s said they weren’t required by the federal government to comply; no regulation, no liability and a judge agreed with Domino’s and it’s up in the appeals court now. (John calls these ‘zombie’ arguments because they keep getting shot down but keep coming back.) However in another similar case a judge ruled that yes they had to provide accommodations.

Another ‘zombie’ case has to do with inventory, the ADA says you must be accessible but you don’t have to change your inventory. Cinemark used this strategy saying movies were their inventory and asking for accommodations meant changing their inventory so asking for accommodations meant changing their inventory.  Cinemark lost the case. In another inventory case, a man with mobility issues needed a temporary hand control added to the steering wheel to be able to test drive a car. The car company said no, that’s changing our inventory. It went to court and in July the court ruled that’s not what changing inventory is about, the ADA is saying you don’t have to stop selling cars because it’s not accessible to everyone. What you need to do is temporarily add the modification to sell the car.

“Well, that sort of blows to Smithereens this idea about inventory, because it seemed to me that installing hand controls in a car is exactly the same sort of thing as providing captions for a movie or tactile interpreters for a movie. You are not changing inventory overall; you are just asking them to make a temporary modification on this particular occasion and this particular item. So that was an absolutely wonderful case. And if we have time to get to it, I will talk to you about some of the things that we anticipate we can do with that case,” John told those of us at the convention.

John Waldo 1

Congress also has the potential to cause us problems. Prior to the con, many of us had heard about the ADA Notification act which revolves around nuisance ADA lawsuits, hundreds of lawsuits mostly on mobility issues. “I don’t mean to pick on mobility people here. The problem is they have the reverse of what we have with effective communication. There are no regulations telling you exactly what to do to create effective communication, but with mobility access there are tons and tons of extraordinarily specific regulations. The flip side of that is that even minor deviations from those regulations can arguably be a violation and bring about a lawsuit. These are the sort of nuisance lawsuits. Apparently there are people who will go out and look through parking lots and find those disability placards, the ones that say disability parking only, and they will say, they are in violation because the sign is the wrong height. Or the type isn’t exactly the right size. Or they don’t have exactly the correct amount of the fine if you park in this space.

I think most of us would admit that these are things that ought to be fix able quite easily. So the ADA notification act requires before filing a lawsuit for the ADA violation, you have to give people notice what of the problem is and an opportunity to fix it.”

The business community’s side of it is there are all these lawsuits that could be fixed easily if you just tell us about it. The other side of it is good to be able to enforce the laws with private action. John feels it doesn’t really affect our ‘effective communication’ and businesses should be given the opportunity to fix issues before going to court.

Another bill that sailed through the House of Representatives was one on class action lawsuits. Businesses don’t like that thousands of people can pool their resources and sue companies such as banks and cable that sneak a lot of added little charges into the bill. So the House of Reps came up with a ‘conflict of interest’ rule to get rid of these kinds of lawsuits. To keep lawyers from making their money by having relatives file lawsuits, the new bill requires class action lawsuits to disclose relationships with plaintiffs or whether or no lawyer represented them before. This makes sense for money-making lawsuits but none for disability rights violations, said John. This would affect advocacy organizations who are suing for accessibility, not money. At the time of the con, this bill was stalled out at the Senate.

The next one is the anti-SLAPP (Strategic Lawsuit Against Public Participation measure introduced in 2015. To explain this John used this example: “The classic SLAPP lawsuit was filed by the developer against, say, the Sierra Club. The Sierra Club would come in and say, no, your shopping center is going to poison the stream that the community relies on with water. The developer would turn around and say we will sue you for defamation and X amount of economic advantage. I won’t win because you are exercising your first amendment rights, but you will have to spend money and time and hire attorneys, so that will be a lesson to you. It will cost you a lot of money to be able to get out there and participate in this public process.”

This affects us because asking for captions would fall into Anti-SLAPP. This would affect ALDA (Association of Late-Deafened Adults) which is a small group with no money, who has successfully advocated for captions in the past. This law could require them to pay the other side’s attorney fees up front. As of now, these fees can be avoided because the action is filed under the ADA and state laws don’t apply. However if there’s a federal Anti-SLAPP statute that would apply to the ADA and subject us to potential damages. It could tie up cases for years making it expensive and then lawyers who work for free doing this sort of thing, might have to charge to pursue captioning. Luckily the federal Anti-SLAPP measure expired in 2016 and has not be reintroduced.

John talked about another lawsuit he briefed us at the  Boise convention in 2016 against the Fabulous Fox Theater in Saint Louis. The Fox theater claims to be one of largest theaters but doesn’t think they have to provide captioning so they are suing them. The Fox is now exploring something other than captions beside the stage because they don’t want to block out seats. Instead they are looking into providing captioning via handheld devices…and if there’s a lot of action we “become a bobble head” looking down to read and trying to watch the stage. John and his client agree this is not adequate. Not only that but the screen is bright and attracts negative attention. The Fox is also fighting captioning more than one show per performance, they are saying once is enough and “we are saying that isn’t enough.” They are claiming undue burden. The case has yet to be decided but John is confident that it will come out in their favor in the end.

He talked about another experience he and his wife had in New York on Broadway with handheld devices which didn’t scroll in time with the dialog. “Broadway can learn from live theater. We can come up with some better way to do this, some better way of creating captions for every seat, for every show, something we don’t have to hold in our hand. So we put together what I call an invitation, a letter, to some of the bigger theater owners that said, we would really like to sit down with you and talk about a better way of doing this and we sent that letter out on the 10th of November. And then I kid you not, one of my friends in New York, that I was working with on this, gets an email from the Schubert group saying, guess what? We figured it out. We realize that there has to be a better way of doing things with live theater. We would love to sit down and work with you on how to make this happen.”

John quoted the SWC convention keynote speaker in Boise, Richard Pimental, “What we really want is the ability to live a spontaneous life. We want to be able to plan at the last-minute, do things spontaneously, just like everyone else.”  Broadway is willing to work with captioning, we can try different ideas to see if we can bring about that spontaneity for theater.

That National Association of the Deaf (NAD) and ALDA are working to get sporting venues captioned. While attending the game, it isn’t just about the game which you get on TV, there are announcements, presentations and interviews on the field. It’s nice to have those captioned too.

He’s also working on theaters maintaining their captioning devices so we don’t have to put up with devices that are charged or captioning properly.

In the future, if the Department of Justice is not going to be our warrior friend then we will all have to come together to make things happen. “One final thought I would like to leave you with is a cool thing about the Americans with Disabilities Act, it is a federal law, but it specifically says that it does not control over state or local levels that provide greater protection for people with disabilities. Some state laws do. Some local laws do.

So if you don’t like the law as it’s written, the ADA as it’s written, try going to your city council and see if they will pass an ordinance in your city that will actually make life better. I mean, in Portland, Oregon, sometime within the past year, the City Council passed a law that saidan ordinance that said all televisions in public places have to have their captions on. So this can be done.”

The Trouble with Hearing Loss Memes

In advocating on September 26, 2017 at 10:09 pm

I look for hearing loss memes to post on our work Facebook page. Some are funny, some are true and some are way off base.  Let’s take a look at memes.

This happens all the time with people who have hearing loss and there’s a variety of reasons. We can sense the other person’s agitation and we still didn’t hear it so we nod and let it go. Or someone is in deep denial still and afraid to admit they can’t hear.

There are a few fixes. One, we ask the other person to rephrase instead of saying “what” or “huh” a third time. We can repeat the parts we heard and ask them to repeat only the words we didn’t hear. If the other person doesn’t know we have a hearing loss, we can start being upfront about it and hopefully their agitation goes down. We can also chose to make these learning experiences for the hearing person. Hearing aids don’t correct hearing like glasses do for vision.

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Wrong! They are called hearing ‘aids’ for a reason, otherwise they’d be called hearing miracles.

My high frequency hearing loss prevents me from hearing some consonants so conversations are like the wheel of fortune. Let the other person know that gesturing aids communication or have them use the ASL alphabet to finger spell the word.

HL meme 2

Excuse my language but this one bugs the shit out me. Yelling and shouting does not help most people with hearing loss. Plus, its in the ear (decibel damage there) and the person is not facing me. I hear with my eyes and my ears. Yelling in my ear or at me will only piss me off.  I will reach out, put both my hands on each side of your face and have you face me. That’s the correct way to communicate.

Hold everything! This might be funny to hearing people but let me tell you there are huge mistakes in communication here. You cannot talk to us like normal hearing people, it’s setting us both up communication for complete failure so you too need to change your ways. Number one, get my attention before you start speaking. Number two, be sure you face me so I can see what you are saying too.

For the hard of hearing people; tell the hearies in you life to face you. Be upfront about your hearing loss and your needs. Don’t just say “I’m hard of hearing,” tell people what you need to facilitate communication. Ask for a booth or a corner table at a restaurant to help block out some noise. Make sure your hearing aids have a program for noisy situations (the program should drop the noise level a few notches and have microphones on focus forward). Sit in well lit areas so you can see what’s being said even if you don’t think you lipread.

HL meme 7

Turn up your hearing aid! He said, “your money or your life,” not your money or your wife.

Um, how is he supposed to “hear” through a mask? I’m sure he uses lipreading with his remaining hearing. Volume will not help, lipreading and proper enunciation makes a big diffidence.  Does the guy with hearing loss know how hears, does his wife? Have they been properly educated about his hearing loss? Do they know hearing aids don’t replace true hearing? I’m thinking they don’t.

There is something to this one. What I heard compared to what was said is often a lot more fun! As long as we both have a sense of humor, it’s lots of fun. Go with it and laugh.  Another round please waiter!

Hearing aids pick up all kinds of noise, not just speech and it can be awful. It will make me clench my teeth so hard I can’t concentrate anymore. Maybe we had too much noise all day and we just need a break. Or we were lipreading for hours and need to rest the brain which brings me to…

HL meme 5

It is so much work and so tiring. If I’m already tired, there’s no way I can keep up so please excuse me from certain social activities at this point. I’ve learned my limit.

HL meme 12

Don’t we wish! Why did hear that and not that? I don’t know but it’s not selective hearing I promise you that. Maybe good acoustics help or the rotten acoustics wrecked my hearing. Maybe I was looking at you and maybe I wasn’t. Maybe you enunciated better than usual or your mumbled. There are so many variables when it comes to hearing loss.

HL meme9

Without captions or a hearing loop I can’t hear you in certain situations. If you want to include me and other hard of hearing people then please accommodate us, and we’re happy to go out to those lectures, pep rallies and workshops. Otherwise you get “what” and we feel isolated in a crowd.

Hearing loss still has too many misconceptions. There’s still a lot of educating to do and our job is to correct them. If you are hard of hearing please advocate for yourself because when you do, you educate the hearies. Figure out what is is you need to hear, state it and stand by it. We all deserve it.

Hearies, it takes too to make communication work. Do your part too because we did not chose hearing loss, hearing loss chose us.