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Who’s the Expert with Hearing Loss?

When it comes to hearing loss, who’s the expert? 

Not long ago while teaching a class at a venue, I requested assistive listening for the attendees. The class was for Hard of Hearing people, giving them the opportunity to learn better communication strategies which also includes accommodations. Thirty minutes before the first class, I showed up to go over the assistive listening options. Present were 2 staff members and an accessibility person, who were all hearing. There was a load of devices on the table. There were 5 Roger Pens, a brand new FM unit for assistive listening and another dated, portable FM system. Together, we surveyed the devices on the table. 

They were proud of what they had but I already knew that they knew very little about any of it. They knew they had stuff for hearing loss but didn’t know how any of it worked. Luckily, I have some knowledge thanks to a series of presentations, my own curiosity to try technology and because I have a nice relationship with Listen Technologies. I have learned a lot from them over the years as they were the speakers of several presentations I attended. We are lucky here in Utah, as their headquarters is 20 minutes away. 

Grow the Know

It now looked like I’d be educating the staff. I said, “Phonak mics are awesome. They are great personal devices. However, they pair only with Phonak hearing aids. Most people won’t have Phonak hearing aids in which case, there needs to be receivers. Do you have receivers for the Pens?”

Blank stares, so I went on. “Even if you had the receivers, people would need to have a dedicated telecoil program in their hearing aids for the Pens to work. That means a trip to the audiologist to set up a program.” They looked at me like I spoke a foreign language. “We most likely won’t be able to use these as assistive listening, but I can use them for show and tell.”

Next we looked at the FM system. “This is an FM system unit that plugs into an A/V (audio/video) system. It will not work as a portable system.” There was a pause as they stared at me. The accessibility person said, “We just bought this. It’s brand new.” 

How can I say this gently?
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“Yes, I can tell it’s brand new. It’s a wonderful system and I have used it before. It is from Listen Technologies. Let me touch base with them and see if they can confirm if it’s for portable use or not.” I emailed Listen Tech with a picture of the unit and they emailed me back within 10 minutes. I was correct, it wouldn’t work as a portable system so I let the accessibility person know. “It will work really well with an A/V unit but it won’t work here.”

They stared at me in disbelief and informed me they would get me a microphone to plug into the FM unit for the next class. The next week they brought the FM unit back into the classroom and plugged a microphone in. It didn’t work, as I expected, but I let them explore the option. I also gave them an email to the appropriate Listen Tech person to learn how to use it. I really hope they put it to use elsewhere as it is a great system.

Checking the Box

Back to the first day before class… After the Listen Tech system,  we looked at the aged and well used portable FM system by another company. I have used this system before too but this was falling apart. Few of them worked as the battery doors wouldn’t stay on. A few were charged, or had a new battery, but only worked if the person held the door tightly closed. Hard pass. This is not a good introduction to assistive listening so I’ll share the symbol with them and suggest they use them while out. This is an example of checking the box, or ticking the box as they say across the ocean.

The experience left me feeling sympathetic toward people with hearing loss who don’t know assistive listening or accommodations. How often do people with hearing loss give up on getting accommodations? The Roger Pens prove some persisted in getting a device and I wondered how much work was it to get it? How many trips to the audiologist did it take and how many meetings with the accessibility crew? 

How could I, a person with hearing loss with knowledge and resources, teach the staff more? The accessibility person felt she knew more than me, she did not listen to me. She didn’t seem to want to learn more about the Pens and the FM system. This could have been an opportunity to learn more and help others with hearing loss. 

At least we requested CART/live captioning and had that available. This the accessibility person understood and she did an awesome job setting up several microphones around the room. This enabled the remote CART person to hear and capture all class participation. 

Another Box Checked Without Knowledge
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Another example was shared with me a few weeks ago by a woman who grew up with Hard of Hearing parents. She grew up with hearing loss, even though it wasn’t hers. She very much understands hard of hearing communication needs. A venue she frequents, got a new assistive listening system but failed to get neckloops. She informed them that the law requires a certain number of neckloops to be accessible for those with hearing aids/cochlear implants. The venue replied that the A/V company told them they met the basic ADA (Americans with Disabilities Act) requirements and wouldn’t budge. In other words, they checked the box and were satisfied. 

Immediate family members are often knowledgeable about ADA requirements and communication needs yet they get blown off as much as people with hearing loss. Julia is a hearing loss partner and she knows A LOT. I have a friend who has a son with hearing loss and she knows A LOT. Both are great advocates, along with the lady whose story is above. Family members (and friends)  can help when making decisions in regards to hearing loss. One thing I know is that all of them will also refer people to a person with hearing loss for questions and verification as well.

Diversity in Teamwork

The journey to wisdom in regards to hearing loss is arduous. Upon completion, those of us in this position know our stuff. We know what works and what doesn’t. We are the hearing loss leaders in our community. Seek us out, get our opinion. We have unique expertise. 

Wouldn’t it be wonderful if businesses and organizations contracted with people who have hearing loss on an “as needed” basis, such as the A/V team and the accessibility person? How about a once a year training contracted by the business or organization to improve communication outcomes and clear up misconceptions? There’s often new technology within that time span to share as well. Notice I said contract. People with disabilities have valuable information and expertise. Just like anyone, they can be paid for it. This is a great way to show diversity and foster inclusion. 

A Word on True Representation

Get true representation from a person with specific disability focus. Find a leader in the community who lives the life daily. Quite often the Deaf and Hard of Hearing communities are overlapped under “hearing impaired”.  While some of our needs are the same, many are quite different. There are some people who can jump back and forth between the communities. For the Deaf (capital D), true representation comes from someone within their community . They have a rich culture with their own language, American Sign Language (ASL), and different customs. They absolutely need representation from their own community. 

The same is true for hearing loss. Get true representation from someone who lives and speaks in the hearing world, with hearing loss. We don’t have a separate language, we continue to use spoken English, with certain modifications. We use some lipreading, some hearing, assistive listening and captions. If someone isn’t meeting you in hearing loss ways, you aren’t getting the best representation.

Learn more with our post on Defining the Hard of Hearing.

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Five Benefits of Diversity
  1. Creative problem solving. When working together, there’s more options on the table and more know-how. Together we can make better decisions before costly mistakes. 
  2. Skills and expertise can be shared for better understanding all the way around.
  3. With better understanding of hearing loss, you’ll get more engagement from the community. You’ll have more success with implementation. Your business, organization or agency, will gain a positive reputation for working with the Hard of Hearing.
  4. Because 20% of the population has some form of hearing loss, you will also better understand your employees. 
  5. Less risk for compliance issues. 
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Accommodations: This is Good Enough For You

Requesting appropriate accommodations can be a challenge, especially if the entity has already decided what’s good enough for you. Educating others is fairly easy, usually, once the communication need is explained. Once in a while, however, they aren’t open minded.  When they won’t go beyond their current rudimentary concept of an accommodation, it is frustrating and heartbreaking. 

For National Speech-Language-Hearing Month in May, we chose resilience as a topic. What a timely topic. Chelle was reminded how ugly the process of resilience can feel. It’s mind consuming and exhausting, but in the end worth it. When we stand up for ourselves and our rights as a human with hearing loss, we help ourselves and we help others who come after us.

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Accommodations for Hearing Loss

Let’s talk about accommodations for hearing loss for Better Communication Month. May used to be known as Better Hearing and Speech Month. It’s been changed to National Speech-Language-Hearing Month, which doesn’t slide out as well as it used to. ASHA, the American Speech-Language-Hearing Association, recently changed the name to match theirs. Whatever we want to call it (we see others using mixed titles), May is dedicated to educating the general public about communication disorders. Hearing loss is considered a communication disorder because we lose receptive communication.

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Going to the Movies with Hearing Loss

While our more experienced audience knows about accommodations at the movies, those new to hearing loss may not. Signage is usually not prominent nor do they advertise that assistive listening or caption devices are available. Most of the time, we find out peer to peer. 

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Hearing Loss Community Member: Angie Fuoco

Get to know another hearing loss community member! Today, we are delighted to interview hearing loss community member Angie Fuoco.

Angie Fuoco is a member of the hearing loss community.
Angie is in the foreground. She's white with curly red hair, blue eyes and big smile. She has a black and white shirt on. Behind her is the outline of a city in the late evening.
Angie with her infectious smile.