Categories
Advocacy Connections deaf Education Hard of Hearing Hearing Loss

Guest Katherine Bouton, Author and Advocate

Meet our latest guest, Katherine Bouton. Katherine is an author, a frequent public speaker, and an advocate/educator for the deaf and hard of hearing. We bet most of you remember the book that many in the Hard of Hearing (HoH) community celebrated, Shouting Won’t Help: Why I—and 50 Million Other Americans—Can’t Hear You. It came out in 2013 and we were thrilled that it brought more awareness to hearing loss.

Her most recent book, Smart Hearing: Strategies, Skills, and Resources for Living Better with Hearing Loss (2018) is an update of Living Better with Hearing Loss (2015) and contains more current information on over the counter hearing aids, and other devices coming onto the market. (Find out more about Katherine’s books on her author page on Amazon.) She also has a long running blog called Smart Hearing.

Katherine is a cochlear implant user and wears a hearing aid. She’s been at the bottom of hearing loss and found her way through it all to become an advocate for others too. 

During the Hearing Loss LIVE! podcast, the four of us talked about many things hearing loss: 

  • The stigma
  • Being deaf in noise
  • Over the counter (OTC) hearing aids coming out late this summer
  • Assistive listening is great and so are captions.  “Captions are the wheelchair ramp for the deaf.” (She credits Arlene Romoff with that quote, read more about this on her blog.) 

Here in the Hearing Loss LIVE! blog, we get to expand on topics we didn’t have time for on the podcast.

Julia Loves Connections

Shall I be a broken record? 

Connections get us in the KNOW! There are many technical books about hearing loss. Lots of scientific studies. But not a lot on self discovery and hearing loss. When we write about our experiences—positive or negative—we find someone who thought they were the only ones.

Katherine talked to us about her days at the New York Times and hearing loss. We don’t often talk about hearing loss, the workplace, or the ADA. Truth is, we should be talking about it. 

Why?

People learn from those that came before. With their prior experience, they can share what they did right or wrong. They know why it is SO important to speak your hearing loss truth and request equal accessibility in your work setting. It’s hard to be the first to speak up. However, when we do, we expand accommodations for all that come after us. In a perfect world, business settings would stop hiding behind their interpretation of the ADA and trust their employees with the request made. This is an investment in the employee, a loyal employee. This should be the way no matter the size of the company.

I encourage you all to join hearing loss support groups. One of the best things to come out of COVID-19 is that many HLAA Chapters meet online. (Here is the NYC Chapter meeting page.)  If you have a local chapter, share invites to other HLAA state chapters to join your local meeting. Knowledge and experience happens when we get together and create a community of support.  

“One of us! One of us!” Chelle’s Chant

That’s the chant that goes through my head when I get into a good conversation with other advocates. We all start out at the bottom of hearing loss. We go through all the muck and mess of it. When we are able to pull ourselves together, we usually go on to help others too. Katherine does that so we enjoyed talking with her. 

Katherine brought up that she thinks stress can make hearing loss worse. Yes! In 2007 I was under an incredible amount of stress and that’s when my hearing took a big dip. I didn’t notice the drop because of everything going on, a coworker did. She took me outside one day and told me she noticed I was missing a lot more than usual. She suggested going to get my hearing checked.

Stress & Hearing Loss

Curious, I went in for another hearing test. My hearing aids were two years old and it hadn’t been long since we did my annual test. The audiologist resisted doing the test. “No one’s hearing changes that fast.” I pushed him for it because I wanted verification one way or another. After the test, he looked at me defeated. “Your hearing dropped a lot. There are no other hearing aids right now that will fit that kind of hearing loss. You’ll have to make do with what you have.”  That was a real crusher. I remember using the music program a lot for a better chance at undering speech. I kept those hearing aids for 6 years all together, making do. 

Thinking back from there, I realized my last big drop in hearing happened while I was going through a divorce. That’s when I went from in the ear canal hearing aids to behind the ear models. So I do believe stress affects the body in all kinds of ways, including hearing drops. 

Michele‘s Passion for Spreading Awareness and Advocacy

Like many, finding a tribe of Hard of Hearing (HoH) peers brought the most profound change to my journey with hearing loss. It opened my eyes to the magnitude of the HoH community and taught me I was not alone. Exchanging stories and experiences with others who understand exactly what life with hearing loss is like, because they face the same challenges of a communication barrier, proved empowering. I regained my confidence and it was the start of my becoming a better self advocate and wanting to share the same with others by volunteering.

A big part of my volunteer effort was with the SayWhatClub and in 2011 I began helping with the management of their public Facebook page. That led to searching for hearing loss-related content to share there. After Katherine’s memoir Shouting Won’t Help debuted, I began reading her “What I Hear” blog on Psychology Today, where she explored the experience of losing her hearing as an adult, and I shared those articles on social media. I still share her blog and news articles.

In looking back in my email archives, I realize I began sharing Katherine’s writing, or articles written by others about her, even before I started sharing her blog articles:

I am very thankful that Katherine chose to become an advocate and to use her platform as a journalist to speak publicly about her hearing loss experience. She has brought much needed attention to the HoH community. 

We need more advocates sharing facts that clear up misconceptions that the world has about hearing loss. It is going to take more of us speaking up for our community and our needs to become more widely recognized and accommodated. It was a pleasure spending time with Katherine and collaborating on our podcast.

Meet Katherine in person online yourself…

Katherine is the president of the Hearing Loss Association of America, New York City Chapter. Their next meeting will be September 20th 6:00 – 7:30 PM EST. The meetings are online and open to anyone. In September they have Hearing Professionals with Hearing Loss. “A panel discussion featuring ENT’s and audiologists who will talk about how their hearing affects their work as clinicians. The panelists range in age (some newly minted, some newly retired) and hearing histories.” The registration link will be added late August. Hearing Loss LIVE! will share the link too.

If you enjoy our content and find it helpful, please consider donating so that we can reach more people with hearing loss to help them help themselves.

Categories
Communicating with Hospital & Medical Staff deaf Education Hard of Hearing Hearing Loss Mental Health & Hearing Loss

Mental Health Myths in Treating Hard of Hearing Clients: With Gloria Pelletier

Our guest this week is Gloria Pelletier, a Licensed Clinical Social Worker, who has become a great connection for us here at Hearing Loss LIVE! She brings a wealth of understanding about how hearing loss and mental health have a long way to grow together. Watch for our ongoing series with Gloria where we will unpack more misconceptions as it correlates to hearing loss and mental health diagnoses.

Change the Therapeutic Milieux
Gloria Pelletier

Gloria: With my last, large hearing drop I no longer could communicate effectively. I could speak but I couldn’t hear what others were telling me. I could still read lips, sort of, but not enough to be able to understand communication.

I decided to go to a mental health professional to learn how to deal with my drastic hearing loss. Unfortunately, what I found was that the experience of losing a sense and the resulting consequences was not well understood in the mental health community. I was given many different diagnoses in an attempt to define my experiences. None of which were accurate. I began to ask my community circle if they had experienced the same phenomena. I did a small survey of those who were doing therapy and no one made any accommodations for hearing loss or understood that there were some adaptations that could look like or were similar to other DSM ( Diagnostic and Statistical Manual of Mental Disorders) criteria.

After a quick literature search it became apparent that this was a common occurrence for Deaf individuals. I was talking to Chelle about the misperceptions in the mental health field and this is how the podcast was born. It is imperative that Hard of Hearing (HoH), deaf, late deafened, Deaf, etc., are understood within the mental health community so that we can get the appropriate treatment.

Hearing loss and the consequences of losing a sense is well understood medically. What is lacking is understanding of how that impacts the HoH emotionally. What does that look like in everyday living?

With the help of Vocational Rehabilitation we explored the technology available now which would assist me in continuing to do therapy. With technology I can communicate with the hearing, and HoH community effectively. I can still do what I love.

My goal is to increase the knowledge within the therapeutic community’s understanding of hearing loss, the consequences and how best serve those with hearing loss. To deconstruct the myths and misconceptions that create confusion for both the practitioner and the client.

I lost my hearing, I didn’t lose my abilities. I have the same abilities I had before, except hearing. There are ways to live with hearing loss that will augment my skills and understanding. Let’s work together to find those, make them known and assist others in knowing hearing loss can be an adjustment not a disease.

Julia: In our Podcast with Gloria you will hear the acronym “DSM.” This stands for Diagnostic and Statistical Manual of Mental Disorders. The American Psychiatric Association is a great place to learn more about DSM and its role in patient diagnosis. 

I don’t know about y’all, but as a kid “mental health” was a dirty word. Almost as dirty as the word “hearing loss.” Mental illness meant you couldn’t perform a job the way a normal person could. Hearing loss meant you couldn’t perform a job the way a hearing person could. Mental illness meant someone unstable who might say something inappropriate. Hearing loss meant someone unstable who might say something inappropriate. 

People around the country are working hard to change the stigma of mental health disabilities and therapy. Thank goodness. But the work is still in its infancy in my opinion. Hearing Loss LIVE! is working to change the stigma of hearing loss disabilities. Thank goodness. But here too the work is still in its infancy.

All patient intake forms should have a section related to hearing loss. 

  • Have you been diagnosed with hearing loss?
  • Has your hearing changed recently?

And so on.

Chelle: With hindsight and new awareness, I’m sure I had hidden hearing loss as a teenager. 

  • Though I could hear in the classroom, I couldn’t hear in the noisy hallways between classes. 
  • I hated being in the backseat of cars because I couldn’t understand what people were saying. I had to lean forward and hang my head in the front seat to hear. 
  • People couldn’t talk to me from another room without a repeat. 

Tinnitus at 18 was suggestive that I might have hearing loss but the audiologist said my hearing was within the normal range. Five years later, I was wearing hearing aids with a more obvious hearing loss.  

Chelle, mislabeled as a typical defiant teenager

Instead of suspecting hearing loss, I was a “typical teenager saying huh” all the time. Or a defiant teenager for not paying attention and mirroring anger with people who were impatient repeating. Years later, I found out while attending a high school reunion people thought I was stuck up, or antisocial.  

These days there are hearing tests for “speech in noise”. When I was a teenager, that wasn’t an option so we just didn’t know. Hearing loss is more prevalent these days. One in five teenagers experience some sort of hearing loss. In a class of 30 kids, that is 6 who may experience hearing loss. If a teacher has five classes a day, that’s 30 kids a day with a possible hearing loss.  

Gloria and I discussed this a couple of months ago. I remember the silence as we both processed this new awareness. There aren’t regular hearing screenings in schools so how long does hearing loss go undiagnosed? How many teenagers are labeled as antisocial? Defiant? Maybe even ADD for not paying attention. Are we checking their hearing?

Michele: I recently stumbled onto the empowEAR Audiology Podcast hosted by Carrie Spangler, Au.D, CCC-A, who has hearing loss herself—she was implanted with a cochlear implant in November of 2019. NOTE: Transcripts are available, however, the ASR (automatic speech recognition) captioning isn’t corrected. You know I’m going to contact them about that.

In episode #40, Dr. Spangler’s guest is Matt Hay, a 45 year old man who began losing his hearing his sophomore year of college. He was diagnosed with neurofibromatosis, type 2 (NF2), and underwent an auditory brainstem implant (ABI – 12 electrodes connected directly to the brainstem in the area that processes sound) just after it was FDA approved in 2000. Matt woke up from the surgery with facial paralysis, he couldn’t walk, and had double vision, not to mention all the work it was going to take to learn to hear again with the ABI.

In reading the entire podcast, what struck me most was that Matt had all kinds of physical rehab and therapy, but not much on the hearing loss side that addressed the emotional and mental struggle we all go through. He talks about the things it took too long to learn—self advocacy, realizing you can question professionals, because they don’t always know best or have answers, and the fact that nobody ever came to him and said, “Hey, we have this training that can help you.”   

Matt found himself explaining his frustration to everyone, even his doctors: ”And I remember being so frustrated and saying like, you just don’t get it. You don’t understand why this is hard, why it’s exhausting, why it’s lonely, why [I] can be surrounded by this support and still feel totally on my own and alone.”

Unfortunately, doctors, therapists, and the other medical professionals who treat us, have not been trained to understand hearing loss.

During a follow-up hospital appointment with CART/Textual English Interpreting—I requested CART for the first time for a procedure I had done last week—the Nurse Practitioner was amazed at how well CART worked. She was very curious and asked a lot of questions about it. One thing I made sure to tell her is that without an effective way to communicate, people with hearing loss can exhibit behavior that is misinterpreted as mental health or cognitive issues.

Why the Hard of Hearing might be misdiagnosed or mislabeled:
  • Staring at a speaker’s lips while lip/speech reading can come across as intimidating.
  • The intense concentration it takes to understand speech is often misinterpreted as anger.
  • Needing more time to process information, mispronouncing words, or the confusion resulting from ‘bluffing’ can be misinterpreted as a cognitive disorder or learning disability.
  • Poor voice modulation leads to a client or patient being flagged as depressed or having a health disorder.

Can you think of others?

We are so happy to support Gloria as she works to increase the therapeutic community’s understanding of hearing loss, and to deconstruct the myths and misconceptions that create confusion for both the practitioner and the client.

Watch our companion podcast with Gloria here.

If you liked this topic, try the Emotional Side of Hearing Loss, there are a lot of emotions that take time to process. Meaningful Connections with People is another good one. Gloria is a wonderful addition to our meaningful connections.

If you enjoy our content and find it helpful, please consider donating so that we can reach more people with hearing loss to help them help themselves.

Categories
Connections deaf Hard of Hearing Hearing Loss Live Theatre Speechreading/Lipreading

Michael Conley Playwright, Reading Lips

Our guest this week is playwright Michael Conley who talks about his play “Reading Lips“. Michael was born in a small town in Kansas. After high school in Chicago and college at the University Delaware, he moved to New York. He received his MFA in screenwriting from Columbia University. Michael currently resides in San Diego and is the Co-Vice President of the San Diego Chapter of Hearing Loss Association of America.

Michael’s plays have been presented in New York, San Diego and Philadelphia.

Michael: Writing “Reading Lips” brought out a part of my identity that I didn’t even know was there. Meeting people with a hearing loss and learning that they experienced the same challenges I have always faced made me realize that I’m part of a larger community. That although I had been struggling my whole life with developing tips on how to “get by” (as I call it), everyone else was trying to get by as well.

Working on the play introduced me to a lot of people I would otherwise not have met. Meeting those who used ASL to communicate made me want to learn ASL. That in turn led to studying Deaf Culture—this history that we all share (even if peripherally).

At the time, I thought “Deaf people” were only people who had no hearing at all. I remember asking someone who was completely deaf if they consider me as Deaf. “Sure!” Not only did that give me more insight into the range of hearing losses people have, but it also gave me an appreciation of how inclusive and embracing the Deaf Community is.

Chelle:
I love making connections with others who have hearing loss. Everyone has something to teach me. I attend Audible Talkers Toastmasters meetings which are held online. I’ve been a member for a year and a half. Their meetings are accessible to the Hard of Hearing (HoH) with live captioning and automatic speech recognition. HoH members get a transcript, or outline, of each speech before the meeting, allowing us to enjoy the live speech and provide more effective feedback. The club is supportive and their members, HoH, hearing, English as a second language, and more, are each fascinating in their own way.

Michael was a guest at recent meeting (anyone can attend as a guest). Alongside his name I noticed readinglips.com. Of course I had to investigate that! It turns out Michael is a playwright and that makes it all the more interesting so we invited him to podcast with us. It was great having him with us.

On his website, Michael shares information about his play, “Reading Lips”, a full-length play about being gay and Deaf. While writing the play, he posed the questions, “Am I gay man who happens to be Deaf? Or a Deaf man who just happens to be gay?” In the upcoming podcast with Hearing Loss LIVE!, Michael shares, “Having a hearing loss has made far more of an impact on the choices I made in life,” and that made me think.

Hearing loss changed the course of my life after the last big drop. How many times have I thought ahead and said, No I can’t go. It won’t be accessible to me. I quit the one job I thought I’d be doing all my life because of hearing loss. I went into a deep dark hole which took a few years to climb out of. Hearing loss impacts our lives in many ways.

Hearing loss affects relationships in our family too. During our podcast together, Michael tells a story about how growing up with a hearing loss affected his family life. I’m not going to spoil the story here, you’ll have to watch.

Gallaudet University Campus, Washington, D.C.

Photo Credit: Reading Lips website
June/July 2019: Michael Conley studying American Sign Language (ASL) at Gallaudet University, Washington, D.C., the world’s only university for the Deaf and people with a hearing loss.

Photo Credit: Reading Lips website

Michele: Before our podcast with Michael, I read everything on his website and searched for more information on the internet. I was especially interested in his experience at Gallaudet University, as I’ve thought about doing something similar—spending a semester or two studying American Sign Language (ASL) and immersing myself in a community rich in Deaf culture. I especially love Washington DC, so there’s that too.

Because there was a no-voicing policy in his program at Gallaudet, Michael talked about how liberating it was not to have to wear his cochlear implant (CI) or hearing aid, and not having to position himself to read people’s lips. I can relate. I’ve never worn hearing aids (other than in trials) or CI. If there is any consolation in not finding help with technology, it is a certain freedom from trying to hear better—something members of Deaf culture understand and embrace—which in turn has allowed me to focus more on communicating better.

I sometimes think people with hearing loss are so focused on their quest for technology to help them hear better, they miss the really important step of learning to be comfortable with who they are without any type of aid or communication tool.

We are likely never going to hear as well as we would like to in some situations—battery failure, too much noise or distance, and/or weak WiFi and cell phone service depletes the effectiveness of our hearing devices, assistive listening technology, and ASR (automatic speech recognition) apps. Even lipreading, textual English, and ASL are a challenge without a readable speaker, captioner, or interpreter.

However, if we can learn to communicate confidently even without any of the valuable communication tools and technology we rely on, we are going to have a life with fewer limits. That is no small thing.

Julia: We are always looking for like minded folks to podcast and blog with. Chelle asked us to review Michael’s website and see if we liked the fit. I read the first three lines of “Reading Lips” and responded, oh yes!

I love the theater. Grew up on it. By age eight I could tell folks what costumes were different in that season of Ballet West’s “The Nutcracker”. I love musicals and often sing show tunes around my house—some lyrics I make up depending on my mood. I’ll take thought provoking, personal growth and experience, small theater any day. I would love to see a production of this play. It’s different and refreshing. It’s about finding your identity. As much as I love the originals, small playhouses where the director and playwright work together I find so enjoyable.

The first time I met Michael was in a Hearing Loss LIVE! Self Advocacy workshop presented by Michele Linder. Michael asked a question, why would folks not just ask for what you need? Why indeed! We need more HoH people to adopt this mindset. Be proactive, be diverse. Be the best HoH you can be!

Watch our companion podcast with Michael.

If you liked this podcast, try artist Liza Sylvestre who explores her hearing loss through art. Also take a look at our blog with Salt Lake Acting Company who offers open captioned plays.

Categories
Accessibility Advocacy Captioning CART (live captioning) deaf Hard of Hearing Hearing Loss Speech to Text Captions Stenographers

Global Alliance of Speech-to-Text Captioning

Hearing Loss LIVE! welcomes Jennifer Schuck, current Board of Directors Chair and Founding Member of Global Alliance, a nonprofit corporation whose purpose is to be the leading professional authority on speech-to-text captioning, representing all captioners, consumers, and industry.

GLOBAL ALLIANCE: It has been two years since the Global Alliance of Speech-to-Text Captioning was founded for the purpose of bringing together the captioning community to empower consumers who rely on captioning. There is no other organization that brings professionals, consumers, advocates, and the industry together to effect change. It is easy to think “I’ll wait to see what this group does before I join.” Often this means everyone is waiting and no one is joining and not a lot of work gets done. An organization is only as effective as its members. So with few members, the change is limited. There is much about the captioning industry that needs to be changed, but we need everyone’s voice to do it! Don’t wait for someone else to make the change you want to happen. Be part of the solution. 

COVID-19 has changed our world in many ways, including bringing to light the magnitude of how inaccessible our world is to communities with disabilities. Quality captioning is equal access. Collectively we can educate every day to show how universal design principles make the world inclusive for communities that have been an afterthought or excluded entirely. Providing “captioning” cannot just be putting words on a screen so you can check an item on a to-do list. Those words must be accurate and actually provide accessibility. 

The Global Alliance has created the NCSP, or the NER-Certified Speech-to-Text Provider, certification. With this certification, we’re setting the quality standard for realtime captioning. This certification is available for all captioning methods, including automatic speech recognition. A quality standard for all methods of captioning is critical. With the advancement of technology, each captioning method has a place for equal access, but all of those lanes need to meet a quality standard, which they currently do not. Without that, captions can cause confusion, misinformation, and frustration for the consumer. 

“Be the change you wish to see in the world” – Mahatma Gandhi 

Visit speechtotextcaptioning.org to learn more, view our events calendar, or join as a member. 

Chelle: While I appreciate assistive listening devices (ALDs) and systems, there are many of us with severe and profound hearing loss who cannot completely benefit from ALDs alone. Like attending plays at Salt Lake Acting Company, I hear more with captions. With ALDs, I pick up sound but it’s not enough to compensate for my hearing loss. CART/captions fill in the gaps for me.

During the pandemic, CART was in high demand and finally got its due by being used a lot for online meetings and classes. It was hard to get CART on short notice. I was happy for the CART profession but it was darn hard to get true CART! Court reporters were used to fill in with “CART” but it was different from what we were used to. At first, court reporters used a different platform that could be difficult to get into, which often held up meetings. Captions were also broken down into seconds and hardly ever a full sentence. I found myself zoning out after half an hour. We offered advice as a community and in the end things improved. Training specifically for CART is needed. We like to read fluid notes with complete sentences and punctuation. I’m glad to see Global Alliance is offering certification for CART services.

Jen’s message above is important. We ALL need to participate to make changes. There’s power in numbers. The stage is set, it’s up to us. 

Michele: As a Consumer Captioning Advocate for over eleven years, I have made a few discoveries:

  • You can never have too many places to network with others who are working toward quality captioning and its universal availability.
  • Surrounding yourself with people who know more than you, or who know the answers to the questions you will likely be asked while advocating, is invaluable.

Consumers, providers, technical and legal experts, and industry leaders are all in the movement for quality captioning together. The world doesn’t yet understand how much quality matters in captioning, or how important captioning is to the Hard of Hearing (HoH) community. CART, which uses live stenographers, is the gold standard of speech-to-text captioning, and it is what more than 95% of people with hearing loss need for full and equal communication access in their spoken language.

The ADA (Americans With Disabilities Act) recognizes CART as a reasonable communication access accommodation for the Hard of Hearing. CART provides communication access in exactly the same way as ASL Interpretation does for the culturally Deaf. 

I consider organizations like Global Alliance to be clearing houses for anyone with a stake in speech-to-text captioning. We learn a lot from one another, and when you have a mixed group collaborating to reach the same objective, each person arrives at a better understanding of the other’s role in the movement. And, a collective voice often makes a bigger impact.

Julia: As a CART provider I am excited to have an organization come into existence that is all about helping the US move forward with a better license option for captioning/CART. Though my test anxiety is to the extreme, I will be signing up and looking forward to this certification. 

If you are a CART provider, captioner, voice writer, TypeWell writer, or ASR (Automatic Speech Recognition) app inventor go to Global Alliance and help us to come together and support consumers in whatever their needs are.

Consumers, please consider advocating for captioning. There are too many HoH people waiting for others to exact change. It will take all of us asking for what we need to make lasting change. Global Alliance has a wonderful Guidelines for Captioning Services document on their website to help get you started on asking for what you need. The document will help you better understand the various forms and methods of captioning.

Consider becoming a member of the Global Alliance of Speech-to-Text Captioning, and if you need more help, contact Hearing Loss LIVE! and we would be happy to assist you further.

View our companion podcast with Jen Schuck of Global Alliance.

If you liked this post, try CART/AI Captioning to learn the difference between CART services and automatic speech recognition. Also try InnoCaption who uses CART providers for their services. There are also Open Captions for Live Theatre.

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Categories
Accessibility Advocacy Captioning Connections deaf Hard of Hearing Hearing Loss Live Theatre Open-Captioned Live Theatre

Salt Lake Acting Company

This week Hearing Loss LIVE! welcomes Natalie Keezer, Accessibility Coordinator for the Salt Lake Acting Company (SLAC), as our guest. 

Natalie Keezer has a Master of Arts Degree in Theatre from Idaho State University and is a graduate of The Upright Citizens Brigade Theatre Training Program in Los Angeles. She relocated to Salt Lake City in 2014 and is inspired by the amazing theatre community in Utah. Natalie loves working at Salt Lake Acting Company and is incredibly grateful to be involved in the important work that is being done there.

If anyone is interested in attending an open-captioned performance at SLAC, you can email Natalie at natalie@saltlakeactingcompany.org and mention Hearing Loss LIVE! for tickets.