If you missed our September 2023 HOPE virtual hearing loss support meeting, here are the notes for you to review. Our topics at this meeting included communication struggles within relationships, personal hearing loops, and cochlear implant upgrades.

You can read more about our HOPE program here. Notes from our past and future meetings are available on our blog.

Hearing Loss and Communication Problems in Relationships
The first attendee shared her experience of a significant decline in her hearing, which has led to communication challenges with her husband. The couple is struggling with this new level of hearing loss, leading to frustration on both sides. She sought advice on how to navigate this situation. Suggestions from the group included using a mini mic or a Roger Pen, maintaining close proximity during conversations, and considering an upgrade of her current hearing device. It was also recommended that the husband attend a HOPE session to gain more understanding about hearing loss.

Personal Hearing Loops
Attendee 2 asked about personal hearing loops, particularly to use with the television. The group provided advice on how to set one up, with suggestions including using a PocketTalker and a neckloop for better audio reception. The attendee was also guided on how to access a video tutorial for setting up a personal hearing loop.

Cochlear Implant Upgrade
The third attendee, who’s due for a cochlear implant upgrade, asked if it’s customary for audiologists to lead this process. The group affirmed that audiologists typically handle this, as they have all the information required by the manufacturer for the upgrade.

Single-Sided Cochlear Implants
Attendee 4, who lost hearing in her left ear due to a brain tumor, sought feedback on single-sided cochlear implants as she was considering this option. The group emphasized the importance of an audiologist’s guidance, and they suggested direct contact with cochlear implant manufacturers to pursue insurance coverage. Another suggestion: Captioning apps on smartphones for better communication until the attendee can get a CI.

Outdoor Picnic Experience
The final attendee shared his experience of attending an outdoor picnic with about 80 people. He found it difficult to communicate effectively due to the noise and felt unsure about the volume of his own voice. The group empathized with his experience and suggested using hearing assistive devices like partner mics or Roger pens/mics to better manage such situations.

Helpful Links and Notes from the Group Chat

• An adapter for an iPhone that doesn’t have an audio jack: Amazon.com: Apple MFi Certified 2 Pack Headphone Adapter for iPhone, Lightning to 3.5 mm Headphone Jack Adapter for iPhone Converter Dongle Audio Cable Compatible with iPhone 14 13 12 11 X XS 8 7 : Electronics
  
• Carolyn’s favorite neckloop: Search on CLA7V2 on eBay.
  
• A video on how to use a hearing loop to hear the TV better: https://youtu.be/XOaM3N7lIEA
  
• An audio cord to connect to the TV: https://www.amazon.com/Aux-cord-break-proof-headphone-CableDirect/dp/B00RXNUBZ6/
  
• Smartphone speech-to-text (caption) apps
  • Otter.ai
  • AVA
  • Heard That
    
• Cochlear implant manufacturers
  • Med-el: https://www.medel.com/en-us/support/insurance
  • Advanced Bionics: https://www.advancedbionics.com/us/en/home/contact-us/reimbursement-services-insurance-authorization.html
  • Cochlear has a dedicated division to helping people get past insurance issues: https://www.cochlear.com/us/en/home/ongoing-care-and-support/help-with-insurance-needs.

This September is a time of celebration for the HLAA-Whatcom County chapter as it marks its 19^th birthday. It is also a time to reflect on and appreciate the Chapter’s accomplishments.

Bert and Charlene begin the journey in 2004

After experiencing firsthand what a support and educational group could do for others, co-founders Bert Lederer and Charlene MacKenzie were inspired to start a local chapter in Bellingham in 2004. The chapter joined a family of 23 other chapters in Washington State at that time.

Guided by the HLAA New Chapter Guidelines, Bert and Char personally invited a handful of people in 2004 to join them in taking a more active and informed role in managing their shared hearing loss. Together with resources from Western Washington University (WWU) Department of Communication Sciences and Disorders, the new chapter created programs of trustworthy information aimed at understanding, treating, and managing a hearing disability. The opportunity for fellowship and support flourished in the search for meaning within an affirming, accepting environment.

Today, the HLAA family in our state has dramatically changed, with chapters folding or being replaced by other types of support, such as HOPE online meetings. However, HLAA-Whatcom continues to thrive in the traditional format. Members can look back on nineteen years of continuous monthly meetings: Twelve times a year on Saturday mornings, including almost three years online via Zoom during the COVID pandemic.

HLAA MISSION

INFORMATION    EDUCATION    ADVOCACY    &    SUPPORT

Meeting longstanding needs of people with hearing loss

People with hearing loss all know the feeling of being alone with this disability – undiagnosed, unrecognized, and misunderstood, unaddressed and underserved, let alone uninsured! But the HLAA mission emphasizing education, information, and support promptly began to meet this new chapter members’ needs that had been long unfulfilled.

Soon the Whatcom Chapter’s programming expanded from WWU resources to local and Seattle-based cochlear implant surgeons, audiologists, and counselors as speakers. As assistive listening technology continued to evolve, the Whatcom Chapter became a very important source of education and hands-on assistance in adopting new tools as they became available. Through the years, members and their families have provided testimonials and shared concerns, insights, successes, and their improved quality of life, thanks to their association with the group. These trends continue to this day.

Turning outward toward advocacy

As the Whatcom Chapter grew and members became more aware of the high incidence of untreated hearing loss in their area, advocacy became a more meaningful part of their mission. Chapter leadership propelled action-oriented projects as the chapter’s inward focus turned toward a more outward dynamic, extending to others beyond the chapter’s membership.

Having benefitted personally and learning what can be done to improve their lives, chapter members also reach out and help others: inviting friends to attend chapter meetings, mentoring, leading hearing loss management workshops, working at health fairs, and speaking to groups and organizations. 

Whatcom County loopers build hearing-friendly places

Some member volunteers have devoted many hours to the group’s very successful Let’s Loop Bellingham initiative. Many hearing loops are now helping people hear in places that were previously not hearing accessible. For example, Anacortes and Burlington libraries, Anacortes Senior Center, Oak Harbor Presbyterian Church, Bellingham City Council, and the Whidbey Playhouse all have hearing loops, thanks to these hearing loop advocates.

The Whatcom Chapter enjoyed their most recent looping project aboard the looped Victoria Star (San Juan Cruise Lines) for a dinner cruise around Bellingham Bay. Feeling included and able to hear and understand the tour guide was a most welcome success. And the fellowship was so gratifying! 

A special honor: The Founders Fund

Prior to the passing of Bert Lederer in 2021, HLAA Whatcom members honored him and Charlene by creating The Founders Fund, which offers financial assistance to post-secondary education students who have succeeded despite their hearing loss. In 2024, the chapter will celebrate their first recipient’s university graduation.  Coincidentally — or perhaps not — this outstanding young person aspires to be an audiologist.

Knowing and personally feeling the joy of what can be done to manage hearing loss together with wanting to share that with others have motivated and inspired Chapter leadership and members to reach out in many ways. The rewarding result is that advocacy both excites and energizes them, enriching their fellowship and helping their chapter grow.

What can other chapters and advocates learn?

What to learn from the Whatcom County experience?  There is great power in helping yourself and others learn about living well with hearing loss.  To paraphrase the Dalai Lama, the pain (of hearing loss) is inevitable; suffering (from it) is optional.  Working together we can all improve our quality of life. But it does take work, so volunteering to be part of the solution is the most important first step.  The Whatcom County Chapter has succeeded because its members have done the work over the last 19 years. They intend to do even more in the upcoming decades.

Thank you to Charlene MacKenzie and Larry Wonnacott for writing this article.

Your Help is Needed!
Make Sure New and Future Technologies Are Accessible to Everyone

Closed-captioning mandates, improved built-in accessibility functions for video conferencing, and many other requirements to help people with disabilities are part of the Communications, Video, and Technology Accessibility Act (CVTA) re-introduced in the U.S. Congress.

Introduced by Senator Edward Markey (D-Maine) and Representative Anna Eshoo (D-CA16), this bill will support people with hearing loss, low vision, mobility issues, and other disabilities by ensuring that accessibility requirements keep up with rapid changes in technology.

HLAA is encouraging everyone in the hearing loss community to write to their federal representatives and urge them to sponsor these bills (the bills are the same but have different bill numbers in the Senate and the House). Legislators are on holiday break, and most are local, so it could be a great opportunity to have local conversations.

Contact Congress

 
Contact Washington State Senators:  Ask them to pass Senate bill SB-2494.

Patty Murray
Maria Cantwell

 
Contact your House Member: Ask them to pass House bill HR-4858.

District 1              Suzan DelBene
District 2              Rick Larsen
District 3              Maria Gluesenkamp Perez
District 4              Dan Newhouse
District 5              Cathy McMorris Rodgers
District 6              Derek Kilmer
District 7              Pramila Jayapal
District 8              Kim Schrier
District 9              Adam Smith
District 10            Marilyn Strickland

Congressional reps will only accept emails from people who reside within their districts. They require you to enter a zip code and then proceed to the message site if your zip code matches their databases. See a map of the congressional districts here if you aren’t sure who your member of Congress is.

Thank you for taking action on behalf of yourself and others with hearing loss!

Key Talking Points

Use these in emails to Congress and also when you see your member of Congress in person at meetings. Please also share a personal story, if you have one, to emphasize the need. But even if you don’t have a story, let them know you want them to vote for this bill. You can copy and paste these points below, and we encourage you to use your own words, too.

• Accessibility requirements for people with disabilities have not kept pace with changing technologies.
• The CVTA will enhance communications, video and technology accessibility for people with disabilities.
• The CVTA would require closed captioning for online video programming, the same as is now required for television.
• The CVTA would require devices that display video programming, such as televisions and computers, to make it easy to activate and customize closed captioning and audio description preferences.
• The CVTA would empower the FCC to ensure that accessibility regulations keep pace with emerging technologies, such as artificial intelligence and virtual reality platforms, into the future.

Thank you to the Coalition of Organizations for Accessible Technology (COAT) for their work, especially the sample letter above.