One in five people have hearing loss. The numbers are not going down, they are going to get bigger. The World Health Organization (WHO) has the most current statistics on hearing loss, February of 2023. WHO predicts that by the year 2050, 2.5 billion people are projected to have some degree of hearing loss. As Julia pointed out in “Our Hearing Partners” blog, if you don’t already have hearing loss, chances are you will experience hearing loss yourself as you age. Start practicing inclusion at home, with family and friends.
People don’t know how to include those of us with hearing loss…until we tell them. It begins with us. While some people come by it naturally, most won’t. There’s a few bad apples out there but once you open up and speak out, you’ll find out most people are good about making sure we are included. They only need to know what we need.
Join our May 2nd workshop on “Inclusion” at 6:00 PM Mountain time. It’s online via Zoom with CART/live captioning. Register here.
Inclusion at Home
Chelle: My family of origin are good about including me. My mom projects when talking to me without shouting. She makes sure she’s facing me too. She repeats as needed and will help me with other people as needed. My dad had a hard time speaking up and he often talked like he had a cigarette hanging out of his mouth, even though he quit smoking years ago. My mom would step up often to be my translator when I really couldn’t understand him. Between the 3 of us, it worked. I always felt included with my parents.
My kids are also wonderful about inclusion. When they were growing up, my parents, sister and my husband made sure they respected my hearing loss. There were a few times they were corrected by an adult, kids will push boundaries. We learned together, I was lucky.
All 3 of my kids will be in their 30’s this summer. My family tends to gather around the kitchen table and everyone gets heard, everyone gets a chance to hear. Similar to me, my daughter is developing hearing loss, though slower than I experienced it. My middle son has auditory processing disorder and my youngest son had issues with cholesteatoma in one ear. In a way, all four of us have problems hearing so we are sympathetic.
The Kitchen Table
We typically gather at the kitchen table to talk and play cards, since I was kid and the tradition stays. My kids and I are LOUD (my mom and husband run away). We want to make sure we each hear, or maybe it’s our own ears and we don’t understand how loud we are. We like playing games and a couple of our favorites are Cards Against Humanity and New Phone, Who Dis? Both games required reading a card then each playing throwing a card to best match the card read. I almost never hear what they say when reading a card. The kids, and significant others, have learned to read it and then pass it to me to read myself. Nowadays, it’s not just me wanting to read the card. I often pass it to someone else.
During these times together, anyone is allowed to stop the conversation and ask for a repeat. Sometimes I throw my arm out across the table and wiggle it around, “Hey wait a minute, what was that?” They’ll repeat as needed. Repeating is an inclusive act as long as it isn’t done maliciously.
Never say Never Mind
One rule I established early on; “Don’t tell me never mind.” Never mind is exclusive. I’ve had my fits in the past to make sure I’m included. One day a few years ago, we were all out on the lawn in the summer sun. Loud as usual, sitting in a circle with lots of laughter. I said something on the sly to the other kids, referring to the younger one. I was in his deaf ear. When he asked me what I said, I told him “never mind.” Of course I was going to tell him, I was just having a bit of fun. He practically jumped up out of the chair as he scolded me. “You told us to never say never mind. You have to tell me.” I felt like a proud mama. I should never say that, even in jest. However, I saw him stand up for himself and demand inclusion. That was amazing.
It starts with us. We need to tell people how we want to be included. Once they learn from us, they will use that experience to help the next HoH person who comes along. It gets passed down.
Tips for inclusion practices at home:
- We can explore hearing aids/cochlear implants, if applicable. Remember not everyone benefits from hearing aids.
- Help yourself by exploring accommodations, technology and communication options. This leads to independence and inclusion. When we find what works best for us, we can confidently go forth and show people how to include us.
- Try out lipreading, then try American Sign Language.
- Experiment with different technologies and choose what works best for you.
- Then learn about different strategies from other HoH community members. It’s all pick and choose accommodations and strategies until you find what fits you. When you know, you can help others. Remember, there is no one way. There are options and we each choose what works best for us.
- Speak up! Share your knowledge. Share your experiences. We have to stop being so quiet. We have a voice and we need to start using it. Let others know what we need for better communication. Communication in my family got even better when I started sharing how I hear. (See the sensorineural visuals.) If you’re uncomfortable telling people, use email or a letter. Then schedule a time to talk about it a day or so later when everyone’s had time to think about their part..
- Be brave. Request repeats. When you’re out in public with friends, ask for assistive listening, captioning devices and/or CART. This is how we will normalize inclusion. Who knows, they may start requesting it with you. Friends and family can benefit from assistive listening too.
- Share websites/podcasts and books that have information to help friends and family understand how hearing loss works. Start your own blog to share daily frustrations with communication. I did that years ago here and it goes back to around 2010 when I was struggling with a new level of hearing loss.
My challenge to you:
Start more conversations this week about hearing loss so inclusion becomes second nature. Education is needed in all areas – at home, work and out in public.
Who doesn’t want to be included?
Julia: Start with, what does inclusion look like for you? Who in your personal circle stands beside you supporting you and what inclusion looks like for you?
A while back, I was teaching classes for the state HoH program and we had a homework assignment around self advocacy. When I asked the students how it went, one of them reported they told their friends how hearing loss worked in group dynamics, especially at a restaurant. After that, the friends stepped up and demanded the best seating dynamic in the restaurant every time they went out. One even asked that the music be turned down the minute they walked in the restaurant. They wanted everyone at the table to be included in the conversation! The student realized their opinion mattered. The student was shocked at how fast the friends adopted inclusion practices with no fuss.
Tell Them Your Truth
For most of your friends and family, it is as simple as telling us what you need. It’s explaining your hearing loss. We want your voice. Your opinion matters to us. We will have your back.
A lot happens around our dinner tables. It’s where we share a meal, tell stories, and have lots of laughter. It’s also where we make some of our toughest decisions. This is where hearing loss can be isolating if the family doesn’t change dynamics when you can’t be part of the conversation.
Choose Your Best Seat, Have a Hearing Helper
My grandma sat at the head of the table, which is generally the best hearing spot. My family knew if we sat on her right side, she would hear people talking and use her lipreading skills. Sitting on her left (her deaf ear) meant getting her attention before talking. The kids often sat on her right side so they could easily visit with her. I sat to her right and if she needed help understanding what they were telling her she could look to me to interpret a bit. This worked well for everyone in our small family settings.
If it’s your table, set it up for success. Have a plan. Is it a large or small gathering? Who is it you want to visit the most? If it’s someone else’s table, call them to set up a plan. If it’s a family meeting with a heavy subject, ask everyone to speak a little slower and allow time for processing. Processing time benefits everyone. It gives the HoH person time to put the sounds together and time for us hearing people to think our thoughts through. Inclusion is setting up everyone for success, allowing better outcomes.
My words of wisdom for y’all….
Do not let friends and family leave you out!
Let me say it again…Do not let friends and family leave you out!
- Allow them to manage you out of the picture.
- Let them speak for you, without your permission.
- Allow them to decide what’s best for you without your input.
- Let them gaslight you, which is also taking advantage of our hearing loss. “I’ll tell you later.” “Nevermind.” “I never said that.” Especially when it matters.
You deserve a voice. You deserve to be included. Bring yourself to the table, hear and be heard! We will stand right next to you while you do it.
We don’t know what we don’t know. We learn a lot from others who have hearing loss, who walked the walk already. Follow Hearing Loss LIVE! and join our monthly workshops (no charge, we have CART/live captions). Join other online hearing loss support groups, there’s several on Facebook, Instagram and Reddit. Put the issue to a group and get several good replies, then pick what works best for you. Get to know your tribe, you will feel less alone.
Here are some of our past blogs and podcast topics that may help you.
- Phone calls, InnoCaption for smartphones. It’s easy to be left out on phone calls. Get captions as a backup.
- Tips on hearing children, Hearing Small Voices.
- Riding in Cars with HoHs. Hearing in cars is such a big challenge!
- Self Advocacy gets easier with practice.
- Learning to self advocate takes a bit of Vulnerability.
- We have to clear up Misconceptions. There’s a lot of them out there about hearing loss.
- A better description for self advocacy is Being Proactive. We can be proactive without our communication needs, right?