Finding Community in the Deaf/deaf World

The more and varied challenges a person experiences in life, the harder it can be to feel understood. This is the case for so many deaf and hard of hearing people today.

In addition to hearing loss itself, isolation and coping mechanisms that people with hearing loss have to adapt to throughout their hearing loss journey can also contribute to this feeling. But no matter how you identify yourself in the deaf community, finding people who you can relate to within a like-minded community is can be life-changing.

Finding my Deaf/hard of hearing community

I have spent the last few years in deaf and hard of hearing groups online. This past year, I have noticed I have been aching to find more people with stories similar to mine. People who “get it.” People who I can talk to about my anxieties and traumas associated with missing out.

As humans, we all want to “be accepted, appreciated, approved, attended to, liked, loved, cared for — and understood,” according to a 2017 article in Psychology Today. “ … if we don’t, or can’t, experience others as understanding us — who we are and what we’re about — then all of these other wants can end up feeling relatively meaningless.

“Not feeling that others really know us can leave us feeling hopelessly estranged from the rest of humanity,” according to the article. “It may well be that feeling understood is a prerequisite for our other desires to be satisfyingly fulfilled.”

Online deaf communities

The reason I have searched online for a deaf community is that I struggle to find these connections in the real world. People just don’t talk about issues like hearing loss, most of the time. In my neighborhood, there aren’t really any safe spaces for hard of hearing people my age to go and talk about our challenges.

But when I go online, to write and explain my story and how isolated I feel, it’s amazing the number of people who say, “Me too.” It feels like an instant connection with these people that I have met online, even though we all live in different cities – and even countries – all across the world.

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Diversity in the Deaf/hard of hearing community

It’s important to remember that not everyone with a hearing loss has the same story.

Each one of us has something in common (our hearing loss), yet our stories and experiences vary greatly. Many people speak more softly when they wear hearing aids. Those who don’t wear hearing aids tend to talk more loudly. Some don’t speak at all and communicate exclusively in sign language. This can make it challenging for us to work together as one community.

Read more: Celebrating the Diversity of Deafness

There are also different levels of hearing loss. The decibel range per frequency is so unique to each person. Sometimes the ears have a balanced amount of loss; other times deafness is one-sided. There is age-related hearing loss, genetic hearing loss, and hearing loss due to complications or infections. Some people get hearing aids as a young child, and others who went several years without technology. Other deaf people have cochlear implants, and some people don’t hear anything. Some people with hearing loss embrace “Deaf Culture” while others aim to fit more with the “hearing world.” Some try to juggle both.

Someone who was fitted with a hearing aid right when they first experienced hearing loss may not feel a need to connect with other hard of hearing people. This person may do just fine in the hearing world, without needing a support group to cope. But others who went through many challenges adapting to hearing aids may have a variety of mental health issues and need others who “get it.”

Read more: Finding our place in the deaf community with our hard of hearing children 

One thing many people don’t realize is that the level of hearing loss does not indicate a guarantee of the challenges faced. The resources provided, variety of social situations, a person’s upbringing, and the amount of support a person receives are also factors.

“…many people don’t realize that the level of hearing loss does not indicate a guarantee of the challenges faced.”

Understanding

A part of what bothers me today is that my hearing loss looks “small” from the outside. It makes me feel like I’m overreacting. I have a moderate hearing loss, and many times I can hear one-on-one just fine, but there are also times where I cannot. Because of this, some people may not even be aware of my hearing challenges.

In the past, I’ve also had louder-spoken friends that didn’t even realize I was hard of hearing. It can be hard when most of your past friends barely even understood your challenges. I need people who understand my difficulties, as they are very real. Yet this war is constantly raging in my head over whether my hearing loss is big enough for my feelings and the anxiety I experience to be valid.

Explaining exactly what I can and cannot hear is exhausting and never 100 percent accurate. It really depends on the situation (the pitch of the person’s voice, how far they are from me, background noise, etc). I can hear really well with the Phonak Sky B90s that I got recently, and I am constantly working on my American Sign Language, so these problems are fading away.

Many times, I have sat in group situations where people just assumed I was a quiet person. Inside I was bothered that nobody noticed I was missing out. Now, if I’m in a group of people and one person doesn’t seem to be a part of the conversation, I try say or wave “hi” to them and check-in. There might be a reason why they aren’t participating.

The trauma caused by past challenges are still a huge part of me and my ongoing healing. And these issues could still arise if I choose to go out the door not wearing hearing aids and put myself into a listening environment. Not having proper resources for many years has had a huge impact on who I am today, as well as my entire belief system.

The power of sharing our stories

Feeling like we’re heard is critical to feeling understood. So many people with hearing loss feel misunderstood and do not feel a sense of belonging. I should have resolved issues as they came up, but instead, I let them build. They slowly grew into a monster of emotions that I need all these new people in my life to suddenly understand, even though I have barely established relationships with them.

I have found that I feel a little less alone in this world while reading other people’s stories. I believe that by sharing my personal stories with hearing people, I can raise awareness. By sharing my stories with other deaf and hard of hearing people, they too can find something to relate to and not feel so alone. I hope others do the same!

Deaf/HOH Community Resources

Volunteering for deaf and hard of hearing organizations can be helpful, but we need more safe spaces/support groups, especially for young individuals.

Check out groups in your city, such as HLAA (Hearing Loss Association of America), ALDA (Association of Late Deafened Adults) and Deafhood Trainings in the U.S. NAMI (National Alliance on Mental Illness) has a Deaf friendly group that meets in Rochester, New York. I would love to see these organization expand in more cities with groups for both the speaking and signing communities. I’m looking forward to having more places where people can go to reach out for support so we build one another up.

As Helen Keller famously said, “Alone we can do so little; together we can do so much.”

Read more: Why I love being part of a hearing loss community

Share your story!

Do you have a story to share? We’d love to hear it! Join the HearingLikeMe community on Facebook or email your story stories@hearinglikeme.com.

• Author Details

Author Details

Kayla DeGuire

I started writing for Hearinglikeme because I needed to share my story, but didn’t have a good outlet, as I felt nobody cared about hearing loss. I did not wear my hearing aids most of my life, but after a buildup of missing hearing things throughout my life, I realized how much easier communication would be if I accepted them. Today, I wear Phonak Sky B-90s. I also communicate in sign language and enjoy being a part of the Deaf world. I was diagnosed hard of hearing in first grade, but spent my entire life trying to act as if it didn’t exist, getting by the best I could. It took me a long time to accept this part of me, which today I am learning to love. I share my stories with advice of what has worked for me. One thing I have learned is what works for me may not work for somebody else. Our DHH communities are diverse and our wishes is something that should be respected and celebrated as it makes each of us safe to be ourselves in our own unique beautiful way.