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THE SAYWHATCLUB CHANGED MY LIFE BY LORNE SMITH

My first SayWhatClub convention changed my life. It was 15 years ago but the memories haven’t faded.

Though I was relatively new to SWC, I had read the glowing  accounts of people who attended the 2002 convention in Alexandria, VA., and how they bonded and laughed each day and well into the night. I knew the 2003 convention would be held in Seattle, just two hours away from me, and I had to be there to see what it was all about.,

Since I couldn’t get time off work to attend the full 2003 convention, I made the best of the two days I had. On Friday morning, I got up early and drove to Seattle in time to attend the second day of workshops. I didn’t know many people there, but that changed fast. During the morning break, people welcomed me, introduced themselves and chatted as if we’d been longtime friends. One group invited me to go for lunch with them. Another invited me to join them on an afternoon boat ride. I felt so overwhelmed by these generous offers that I turned them all down and spent a quiet lunch alone, in my usual comfort zone. I’ve regretted that decision ever since and vowed never to repeat it.

“People I had met online and others I had never met became instant and lasting friends at that convention.”

For the next two days, I spent as much time as possible in the company of other SWCers at workshops, social activities, the banquet and in the hotel bar, which has become a traditional gathering place for SWCers at the end of each day. People I had met online and others I had never met became instant and lasting friends at that convention.

Hearing loss is a powerful bond. Many of us don’t have family, friends and coworkers who understand the struggles we face each day. At SWC conventions, we have a lot in common, even though our hearing losses vary. We learn together, share our experiences and use whatever methods we can to communicate with each other, without fear of being left out.

“I’ve always liked to say, ‘Hearing loss brings us together; friendship keeps us together.'”

Lorne hanging with friends at a SWC convention

The motto of the SayWhatClub says it all: “Friends with Hearing Loss.” As I’ve always liked to say, hearing loss brings us together; friendship keeps us together. The strength of the SayWhatClub is what we learn from each other and the support we receive from our friends with hearing loss.

Since my first experience in 2003, I haven’t missed a SayWhatClub convention. It’s one of the highlights of my year. I look forward to bonding with old friends and making new ones at the 2018 SWC convention  from Aug. 1-4 in St. Paul, MN.

I hope to see you all in St. Paul.

For more information on upcoming conventions, visit

SOLO TRAVEL: Getting Started

By Michele Linder

Training myself to be a better solo traveler — who happens to have a profound hearing loss — has been among the most valuable teachers in life. It has taught me how to cope with and embrace my deafness, and how to fit into a world I can’t hear.

Don’t get me wrong, I love traveling with others, but some things you can only learn and experience by going solo. Traveling alone leaves you more open to unique discoveries and adventures, and there’s nothing that will make you feel more empowered.

Many would never consider traveling without a companion, even those who are fully-abled. We each are free to set our own limits — I’ve always supported each to their own — but for me, I am not willing to let anything take away my independence, or place limits on where I can go, and when. I want to control my own plans, not wait until someone can accompany me.

So, that is the first question you need to ask yourself: “Do I want my travel to be dependent on others?”

If your answer is “No,” then the next step is to take control and teach yourself to be a good solo traveler. That doesn’t mean you book a long and involved trip that includes flying to some far away land. It’s best to start in your own backyard.

The biggest deterrent, as with anything you undertake, is to fixate on what could go wrong. Shifting your focus on the goal — your destination — is essential. You have to be willing to do whatever it takes to reach your destination.

PART I: WHAT SOLO travel CAN TEACH YOU

SELF-RELIANCE:  When there is no one else to depend on, you learn to depend on yourself. It’s up to you, and you alone, to make your trip a success. And by “success”, I don’t mean that everything went according to plan and was easy. You’ll learn the best lessons when things don’t go well, or when your trip takes an unexpected turn.

EFFECTIVE COMMUNICATION:  When you travel alone there is no one else to hear or listen for you. It’s all on you, and it forces you to communicate effectively to get the information you need. You can’t fake anything when successfully reaching your destination depends on making yourself understood and getting specific information.

ADVOCACY:  Solo travel shines a big old spotlight on how we perceive ourself and our disability. If you want to learn how to shed diffidence, or that feeling of needing to apologize for the extra effort required to communicate with you, traveling alone is the cure. There is no better way to learn how to effectively ask for what you need.

PROBLEM SOLVING:  If I had to choose one point as the most important, problem solving would be my number one. Travel presents such a huge opportunity for the unknown — delays, cancellations, missed stops, etc. — and is so well suited to best laid plans going up in smoke. You’re forced to think on your feet and to figure out an alternative. 

CONFIDENCE:  Traveling solo takes you out of your comfort zone, and when you succeed at something that scares you, you can’t help but become more confident and capable.

PART II: FIVE SIMPLE RULES

These rules will become your commandments.

  1. DEFINE SUCCESS SIMPLY:  Reaching your destination safely.
    Bonus: If you focus on that one thing, all that happened on the way there becomes inconsequential.
  2. PANIC IS THE ENEMY Let go of irrational fear; it never improves a situation.
  3. ASK FOR WHAT YOU NEED CONFIDENTLY:  Let go of the notion that asking for what you need is bothersome or equates to a favor. No one is doing you any favor by accommodating your difference.
    Bonus: You’re teaching them to interact with someone who is different; a win for all.
  4. LEAVE AS LITTLE TO CHANCE AS POSSIBLE: Do your homework, prepare, learn as much as you can about your route, mode of transportation, and destination. Think about what can go wrong beforehand, and plan for it.
  5. REMAIN POSITIVE If you can’t control it, exercise flexibility and tolerance.
    Bonus: That missed flight or delay is an opportunity to catch up on your reading, work on writing your next blog article, or chatting with someone in person or online.

PART III: TAKING THE PLUNGE

START SMALL:  Take a bus, trolley, light rail, or train in a city close to you.
POSITIVE FRAME OF MIND:  Choose a day and time when you’re in a good mood and feeling more confident.
BE PREPARED Familiarize yourself with routes and maps. Look online for this information or grab a bus or subway schedule the next time you’re in town.
BUY AN UNLIMITED OR DAY PASS OR TICKET Give yourself a cushion. A flexible ticket means a missed stop or wrong turn won’t be as big of a deal.

Once you’ve mastered a small trip, keep pushing yourself toward bigger and longer solo trips. Each success — arriving at your destination safely — builds your confidence, and before you know it you’ll be purchasing a Eurail pass and traveling Europe alone!

You might think learning to travel alone, while deaf, is something you’re doing for yourself. It is, but it also demonstrates to the world how capable people with disabilities are. When you do that, you’re making things better for all of us.

Interview with Cheri Perazzoli/Let’s Loop Seattle, Part II

By Kim Ward

Cheri Perazzoli, Let’s Loop Seattle, is the Director of Advocacy for HLA- Washington state. This is Part II of a three part interview on advocacy strategies she employs. If you missed part I read here.

Previously Cheri discussed how she convinced Town Hall Seattle to install a hearing loop. In this segment she will answer more questions about her involvement with the Seattle Repertory Theater and Seattle-King County Metro’s library systems. Additionally, she discusses her strategy for dealing with resistance.

K:  In our last interview, I asked you to describe some of your greatest successes in hearing loop advocacy, and you talked about Town Hall. I understand the Seattle Rep is also a win that is dear to your heart. How did you work with the Rep to make the loop happen?

Seattle Rep Theater/Let’s Loop Seattle!

Build your Community; Timing is Everything

C:  Since our arrival in the Pacific Northwest, Lou and I have been patrons of the Seattle arts scene. As season subscribers, we’ve engaged with front-of-the-house staff and key folks in the arts community. Upon seeing me check out an assistive listening device at the Paramount, one of my personal friends asked the Seattle Rep to install a similar system. This was years ago. When the Rep leaders learned customers were frustrated with their current assistive listening system, my friend suggested the Rep install a hearing loop, and that got the conversation started.

This picture, taken from the Let's Loop Seattle site, shows signage at the ticket counter indicating the presence of the hearing loop at the Seattle Repertory Theater
Signage at the ticket counter indicating the presence of the hearing loop at the Seattle Repertory Theater.

K:  So you are saying that the Seattle Rep saw problems with their system, but they didn’t know what to do about it until your friend suggested they install a hearing loop?

C:  Well, kind of. 

We’ve found timing is key. If a new building is being built or if a venue is undergoing a remodel or upgrade, you can sometimes work with planners to include a hearing loop. Here’s where existing ADA law and local ordinances can work to your advantage. The 2010 standards for assistive listening were altered to require that 25% of all assistive listening system receivers be hearing aid compatible.

Focus on hearing assistance

Since the people who need hearing assistance the most are those of us who wear hearing aids and cochlear implants, it makes the most sense to install a system that is likely to be used, and which requires much less maintenance, staff service and storage on the part of the venue. The telecoil in the hearing aid or cochlear implant enables the patron’s personal hearing device to double as an assistive listening receiver. What could be easier than simply changing a program on your own device when you need to hear better?

Budgets

Budgets are always a challenge, so requesting that funding be allocated for a hearing loop or other hearing access is the first step. Suggesting ways that a venue can fund (or should fund) is also helpful.

Asking for communication access to be included (or for access more broadly) is part of any organization’s strategic plan that sets the stage. For example, the Seattle City Council passed a resolution (31641) in 2015 stating they intended to improve hearing accommodations. We point to that and say, “Remember?”

With the Rep, it was a matter of timing and their commitment to build community. Like many theaters, the Rep has a lot of volunteers who might not be aware of Assistive Listening System options. And sometimes front line staff or volunteers hear about issues. That can take a while to reach decision-makers.

An all-inclusive staff retreat revealed issues with the Seattle Rep system. Once the Rep found out though, they were wonderful to work with. They even held a fundraiser to pay for the loop. Not only did they install the technology, they continue to test the equipment before each show. And they market the accessibility. Lou and I are subscribers. Before every show, we get an email and the info about the loop is included.

K:  That’s so important. A lot of times when I want to know what kind of access a venue offers, if any, I have to search through several web pages to find that information.

C:  Jeff Herman, the Rep’s Executive Director, was honored with the Northwest Access Fund’s Best Practices Award in 2015. The Rep is committed to accessibility and includes this in their marketing and publication materials.

Libraries

K:  Cheri, I wanted to ask you about about libraries in the Seattle-metro area. Information and circulation desks in libraries can be super challenging for people with hearing loss because there’s all this ambient noise from computers, printers, babies crying, and sometimes loud street noise at some of the busier city libraries. Most people use their “quiet voices” in the library to the point of barely whispering, which as you know decreases the ability to lipread, as well. (Whispering requires less mouth movement.) KCLS has always been very good about accommodating me as an employee. But, I didn’t know about the loop until you installed it at my branch in 2012. I like to think I’m well informed about all of the access options available. That a technology existed that could help both me and our patrons surprised me. And to think I never heard about it!

Reading into your earlier comments, it sounds like you face three challenges. 1. Educating people with hearing loss about what is available. 2. Convincing vendors to install it, and 3. Getting the word out that it’s there. Because — even after venues install the technology, their patrons may not know without adequate signage and some kind of promotion.

C:  Right. Kim, when we launched Let’s Loop Seattle in April 2012, we reached out to libraries, and they sent their HR and facilities folks. We’ve found libraries to be receptive to loops, including KCLS, Burlington, and Bainbridge Island.

K:  The Seattle-metro area is a diverse region, and libraries are aware of the positive impact they can have on neighborhood communities by reaching out to the various populations. The loop at KCLS turned out to be a lifesaver for me. Best of all, it’s extremely convenient to use. It’s always on. My colleagues are hardly aware of it. They don’t have to turn it on or check its batteries or speak into a microphone or anything. So, it’s very easy to use and offers access to anyone who has hearing loss and t-coil capability.

Holistic approach

C:  One of the things I was not prepared for, and there were many, was that some of the places that already had some sort of communication support were the ones most interested in making improvements!

K:  Yes that is surprising. 

C:  There were and there still are so many places that do not have anything in place to help with communication access. My focus has been on getting more places in the hearing loop, rather than upgrading or replacing existing technology.

K:  I would love it if we could get more access at places like Jazz Alley and The Triple Door. I don’t know that anyone has ever approached them. I haven’t. Though Seattle is ahead of the curve when it comes to deaf access, there are so many venues that still offer nothing. So I wanted to ask what do you do when you are denied access?

Determining need

C:  I’ve never filed a formal complaint, but that doesn’t mean that I won’t. Whenever I’m called to talk to a venue about communication support, I always try to find out exactly why. Is there a patron or group of residents making the request? What is the patron’s preference? What are they offering now? Priority seating, a script? If there’s an assistive listening system, I ask why they want to replace it. This is really important in live theater where actors are not traditionally miked. In having the equipment, the theater may have checked the compliance box, but they have not addressed cultural changes to make the access effective.

With any assistive listening transmission type, the outcome is directly related to the quality of the audio and microphone arrangement. These aspects must be reviewed before a replacement is considered. So many times, we hear that the infrared (IR) system isn’t any good, or the loop doesn’t work well, when the problem can be traced to the original AV/mic situation. True — there are poor loops, outdated IR and inferior FM systems. But many times, inadequate performance can be traced to the human factor. Therefore, we are most adamant that all contracts for a loop system be written to specify the system be installed to meet or exceed the International Electrotechnical Commission (IEC) standard for performance.

K:  How open have various venues been to looping technology compared to other types of accommodations?  

C: Most venues will tell you that they want to do it, it’s just that it costs so much, or aesthetics must be addressed. They don’t want to cut the carpet. One challenge has been the lack of qualified, reputable installers. Facilities that are required to get multiple bids have often been persuaded to choose a different type of assistive listening system.

K:  I am aware that publicly funded building projects are required to get several bids while using performance based standards to determine the lowest bid on comparable work. Given funding constraints and possible confusion over the various listening systems available, I can see why they might choose a less expensive option.

“It’s a great idea, but it costs so much.”

C:  I heard this so often. So I went on a search to find some grant funding. In 4Culture here in King County, we found a wonderful grant source for the arts community. Applications must be completed, and 4Culture makes all the decisions.

Not all vendors who specialize in serving the hard-of-hearing with assistive listening technology install loops. Mainstream AV installers are not incentivized to learn the specifics of loop installation. It’s labor intensive, and it requires training, experience — and math and physics to make it all come together. Often these vendors simply want to sell their specific product, and they don’t really care about the user experience. Thus, many more places than I would like to count have installed a different assistive listening system. Still, I have to count that as a success of sorts . . . It’s disappointing, but I mainly feel bad for the advocate who’s driving the install. Consumers prefer hearing loops almost nine out of ten times. And of course, user-friendly loops are the most likely to get used.

K:  When you find a public venue that doesn’t offer access to the deaf and hard-of-hearing, what is your normal plan of attack if you have one? 

start the conversation

C:  Send an email/letter to start the conversation.

For a specific event, I start with an email to the event planner, or the person noted to contact for additional information, explaining that I’m hard-of-hearing (HOH), and I do not use American Sign Language (ASL). I reference our numbers to indicate that while I am making the request, that I am not alone. Next, I ask what kind of hearing accommodations are put in place. This is a necessary step because it indicates to them any forgotten ADA considerations as well as the deaf/HOH community’s expectations. Also, the question may flush out an assistive listening system that is locked away, that no one knows about. Or arrangements may have been made. Yet, staff are unaware, or they may not have publicized the access.

Depending on the situation, I may wait for a response, or I may expand to describe how I hear in public venues such as theirs. I give examples and describe the process and details of using hearing assistive technology, and I also request CART/captions, (where appropriate). I state how those accommodations will help me participate. “As each person speaks into the microphone, the loop enables me to hear the speaker’s voice clearly, and CART allows me to catch any dialogue I may have missed.” 

For a specific venue. I send something similar, but, depending on the venue, I may reference a program I attended and liked, that I could not hear. I explain how much better it would be if I could understand and participate like others. Or when a venue is in the process of a remodel, I do something similar. I always point to other venues and programs that are accessible.

K:  How often do venues flatly refuse to install a loop and what do you do when that happens?

Pinpoint the Excuse

C:  Yes, it does happen occasionally. I try to pinpoint the excuse, and I hear a lot of them. 

  • We have no plans for hearing assist.
  • The venue doesn’t have an assistive listening system.
  • We aren’t planning to use a PA.
  • It costs too much.
  • We don’t have enough time.
  • We are just a non-profit..
  • Okay, we’ll get an interpreter.  (!!???)
  • We don’t want to spend the money.
  • Too complicated.
  • Nobody else has it.
  • No one has ever asked or complained; we don’t want to. 
  • Our AV guy says his system (insert FM/IR ) is better.
  • The hearing resource center recommends FM or IR.
  • We don’t want to remove the carpet.
  • It won’t look good; we don’t like it.  
  • Mainstream AV are not incentivized and do not have training and pass along false information: “You have to be really careful if you install loops.”: “Loops have too many problems.”: “It’s too expensive.”
  • We don’t want to.

K:  It sounds like you’ve heard every excuse possible.

C:  Right. Once you track down and identify the real excuse, it’s easier to address. When places realize the law requires communication access, most install an assistive listening system. But sometimes they install something else, instead of the loop. They may look for the cheapest system available. Sometimes local resource experts and existing venue contacts persuade them to try something different. They don’t realize that others have their own agendas, or are motivated by profit. Many times, you don’t find out until it’s too late. Folks who do not use the technology, or who have not experienced the hassles of distributing and maintaining equipment really don’t understand the user experience. They make the decisions on our behalf and that’s just wrong. 

clarify the need

Often times, people contact me after asking a venue for accommodations for months, even years. I try to find out from that person exactly the listening situation they are trying to remedy, the problem, exactly what they want, and why. That way I can better work with the person and the venue to come to an agreement that will best meet everyone’s needs.

I use ADA lingo and reference links. I provide testimonials, and I connect folks to people in similar venues. We maintain a list of looped theaters — both local and national. We have a list of looped municipal buildings, too.

Education is Key:

Incorporate the terms: auxiliary aids and services and alternate formats, required by law….and reference similar locations, venues, or programs that are accessible. Reference ADA resources. I point folks to my website where I have a listing of looped venues and information about how to plan an accessible meeting, Communication Access Real-time Translation (CART) resources etc.

Resistance:

Communication Access Relay TranscriptionI don’t think I’ve ever been denied CART. Once, I arrived to see the reader board in place, but the organization didn’t seem to understand it was their responsibility to arrange the Cart reporter! I have built relationships with my local CART providers, CCAC and others. I’ve walked folks (myself included!) through how to set up remote CART. I’ve had venues and CART providers who were unable to deliver as promised. At times, I’ve had to be graciously persistent, to the point of referencing the legal obligation, but I’ve never had an outright denial for CART.

K:  I have been denied CART, but I was persistent and got what I wanted in the end. It was a case of an event planner not understanding ADA laws. Actually, I filed a Civil Rights complaint. I was polite about it, and sent information. After he refused, I did let him know that I would be filing a complaint because he told me flat out the venue wouldn’t pay for CART, and that he had no intention of offering any type of access at all.

Things changed in my favor very quickly after I filed. It turned out the event planner misrepresented the venue’s policy on providing access. The venue sent a nice message within a day and assigned someone else to work with me on access for that event. If I had to do it over again, I would ask to speak to a supervisor before filing — which I think should be a last ditch effort. It was a learning experience for me and the event planner, I think.

 C:  Good for you! Unfortunately, lack of education on the part of event planners is far too common. Loops and HAT are a completely different story altogether. Installing, implementing and utilizing HAT requires not only an investment, it requires others to change their behavior to accommodate your hearing loss.

Captions versus Loops

Seahawks fans break sound record - Elaine Thompson/AP
Captioning access is nice at CenturyLink field, especially when the Seahawks break sound records causing small earthquakes.

K:  Right — There are pros and cons to both CART/captioning and Loops/HAT. I can’t see the hearing loop working in a football stadium, for example.

However, after it is installed, nothing else needs arranging. That means deaf/HOH people can attend every performance, not just the one captioned performance offered during a two week period. The flexibility is nice, especially for working people who may not be excited about commuting to Seattle on a rainy Thursday night to see the one captioned performance offered. You can pick any performance and going to a play can be more spontaneous.

However, all of the Seahawks games have captions, and I love the captioning at CenturyLink and Safeco fields though. One advantage of captioning is that people who don’t use listening devices may also read the captions. That includes signing Deaf, as well as people who are HOH who don’t benefit from hearing devices, and those who speak English as a second language.

C: Kim, did you know the Michigan State basketball stadium is looped?

K:  No — Really?? That must have been a huge undertaking!  I’m not sure it would work for me at CenturyLink field. I actually take my devices off there. The noise is deafening! But I could see it in a basketball or hockey stadium. A very large area to loop, though!

C:  Yes, a perfectly designed, hearing loop, one that meets IEC standards and that’s properly integrated with appropriate AV can benefit a great many folks in the hard of hearing community at each and every performance, each and every day!

K:  Cheri, thanks again for this interview. I have learned a lot about the business aspect of offering access, and the many issues vendors have to deal with when considering ADA laws, funding and city ordinances. It helps to know their viewpoint, and that “no” doesn’t necessarily mean “never.” Things keep getting better and better all the time for those with hearing loss, thanks to people like you. In our next interview, I want to talk more about some of the bills you and others in HLA-WA have been advocating in Washington state. I’m very excited about what’s happening here, and I hope other states follow suit.

 If you are interested in finding out if there is a looping organization in your area, Cheri has listed other loop orgs on her website here.