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The Emotional Side of Hearing Loss

Hearing Loss | Last Active: Jun 26, 2022 | Replies (45)

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@lizzy102

Interesting discussion, thanks!
I have struggled with the question, “What do I call myself?” over the years as my hearing/speech understanding decreased. At first I referred to myself as HoH, worked fine. I’d start conversations in school or at work with “I’m hard of hearing, it is an invisible disability. I may need to ask you to slow your speaking down and enunciate more clearly as well as ask you to look at me so that I can speech read.” Then, my hearing got worse. My audiologist said I wasn’t yet capital D Deaf but could say Hard of Hearing/deaf. So, I did that for a few years, advocating more and more strongly for myself (and faking it when people just would not slow down. Now, I am small d deaf. Without my HA and CI, I am profoundly deaf. Because I am not a member of the D-Deaf community, don’t sign and was deafened later in my life I am a little d deaf.
It is so exhausting. I am so grateful for my Cochlear Implant though, I wear out when in stressful hearing situations (airports) but it is nothing like it was when I had only my HAs. My Nadia wonders kept me afloat until they didn’t and I’ll always be grateful for my wonderful audiologist and her encouragement to go up the scale to better HAs when necessary.
I really like reading about others emotional well being. We’re pretty lucky to have this forum.

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Replies to "Interesting discussion, thanks! I have struggled with the question, “What do I call myself?” over the..."

There's some interesting 'history' on this 'who are we' issue too. For generations we were all referred to as deaf in most research done on hearing loss. When HLAA was founded in 1979 as 'Self Help for Hard of Hearing People, Inc.', it gave the partially deaf population a voice, and a name. That name being 'hard of hearing' as separate from those who were deaf.

Many people did not care for the term 'hard of hearing', but after considerable debate, it became the standard terminology. There just wasn't another term that seemed to work. The trend became using the term 'hearing impaired' when referring to all people who have any degree of hearing loss.

Along came the 'politically correct era'. The word 'impaired' became politically incorrect. Very few within the hard of hearing population found that offensive, but the culturally Deaf population did, so the term hearing impaired became an issue although it is still used in research bodies.

It's important for those of us who consider ourselves 'people who prefer to remain in the hearing mainstream by using technology ', to understand the difference between 'BIG D Deaf' and 'deaf'.

People who are Deaf have a culture all their own. They consider their deafness a 'difference' rather than a 'disability'. They are opposed to curing hearing loss, and created a lot of turmoil when cochlear implants started helping people remain in the hearing mainstream. This was sensational enough for the media to pick up on and feature this unusual mind set in many public forums.

As a hard of hearing person who is clinically deaf without the technology I use, I have had to stand up and speak up in many instances when people have confronted me with this. They have asked me "How could you possibly not want a cure for your hearing loss?" I was easily bundled right into that Deaf attitude that did not reflect my views at all. The good thing was that it gave me the opportunity to explain this to whomever asked me that question. Still, this profound attitude did slow down research in medicine and technology for a time.

You hear me promote HLAA often. By emerging in 1979 to give our population a voice, we have been able to hold our ground. Research has concluded that communication disorders, of which hearing loss is one, is far more prevalent than believed prior to the founding of the National Institute on Deafness and Communication Disorders (NIDCD) in 1988, within the National Institutes of Health. HLAA, then called SHHH was very much behind that. (SHHH became HLAA in 2006.)

Statistics today show there are nearly 50 million Americans who experience hearing loss to some degree. Fewer than 2 million of those people are of Deaf culture. The other 48 million want to hear, do what they can to hear, and/or are frustrated because they don't know what to do to hear. We are 'the hard of hearing population'. While many of us are actually deaf (small d), we are not, and never will be Deaf (big D Deaf) because we do not use American Sign Language. (ASL) or consider ourselves part of an exclusive community.

Can we learn ASL? Of course we can, but in most instances it would be like learning a foreign language that none of our family members, co-workers, etc. use. We would have no one to communicate with. The culturally Deaf population is very tight knit. Many intermarry. Many work in Deaf organizations. They tend to socialize together, etc. We hard of hearing folks tend to live in the mainstream with the native language we need to use to communicate.

I tend to identify my situation by saying "I do not hear well, and may need you to repeat something." If the person I'm trying to request help from doesn't get it, which does happen, I will say "I am deaf. I need you to _________ (whatever it is that I need, be it something in writing, turning down background sounds, moving to another area to communicate, etc.) Bottom line here is that I am one of about 48 million people who function as 'hard of hearing'. Love it or hate it, that term is the one most often used.

Last word here is the importance of knowing what works in specific situations. If you need assistance, ask for it. If you enjoy movies, performing arts, meetings, etc., use the technology that is mandated by the Americans with Disabilities Act. Those venues do not have to provide it unless it's requested. So it takes some advanced advocacy and education to get them to get it. And that, like it or not, is up to us to do. You cannot walk into a public venue and insist on 'communication access', but you can tell them they need to provide it for you the next time around so they have time to get it installed. You likely will have to educate them and be a bit pushy. That's called advocacy.

It's important to be upfront about your needs. You don't have to start with "I'm sorry". Know what works for you and do the education needed to help get it.

Are you willing to learn about hearing assistive technology that can make a difference? Are you willing to try it?

I'm a little over 6 months in - right ear implanted. Your comment about wearing out in stressful situations rang a bell. I notice I do the same thing. I was planning on going to Great Granddaughter's volleyball game today at the Convention Center (9 to 2 or later) and my granddaughter suggested that I might not want to go as the noise is so over powering that it is getting to everyone with even normal hearing. If I went they would all be concerned about me, so they will text me the ongoing game results.
When I was first activated (first week) I went to one in a quieter location and was overwhelmed by the noise towards the end of the matches, so much that I didn't hear the warning that a ball was headed in my directions and I got hit in the head. This panicked my tribe (I was ok). They are great at making sure I get to noisy situations but also aware of limitations as my brain 'learns'.