[NFB-DB] Identifying as deafblind

Wed Aug 18 00:01:54 UTC 2021

Hello everyone,

Reading these statements has been such an uplifting and affirming experience. I’m typically a lurker on lists, but decided it was definitely time to join the conversation.  

My hearing impairment was first discovered when I was 15, but I completely dismissed that possibility as absurd. In my mid 20s, I had to accept that it was true.  

I got my first hearing aids in 1990-ish, and have had many since then. I went from hiding in shame to proclaiming proudly to anyone who will listen.  

In 1999, a friend recruited me to volunteer at an AADB conference. She said to me, “You know, you are DeafBlind yourself.” I did not much care for the sound of that.  

At the conference, however, seeing people with every level ofhearing loss and every level of vision loss and every possible combination, I began to feel much more comfortable in my own skin. 

In 2012 or 2013, I went to a series of presentations in order to write about the new iCanConnect program. I’m a journalist, and was gathering stories for my newspaper.  I fell in love with the program, and wound up teaching in it for three years. I loved those years and loved all the people I met. 

I live alone. With family and friends, I function pretty much like a hearing person who is blind. I have the most powerful hearing aids on the market, but the truth is that I miss about half when I’m in a gathering of more than four people. Covid and Zoom almost allowed me to forget that I have a profound hearing loss because, of course, my phone is streamed to my hearing aids and all my devices are cranked up to max volume. 

Once we all started joining the world again, though, the anxiety of struggling to catch the conversation was back in full bloom.  

I have writte many columns, reviews, profiles and more about blindness, deafness, DeafBlindness, and all of the associated equipment, but my love letter of sorts to all of my fellow DeafBlind friends and colleagues is my book 

WHEN YOUR EARS CAN’T HELP YOU SEE, which Is available in print, braille, and several electronic versions from National Braille Press

www.nbp.org <http://www.nbp.org> . 

When I was teaching, one of my students showed me a little pro-tactile sign, and I would love love love to learn more. I learned the manual alphabet when I was ten, but have been told I do a few of the letters wrong. 

I think a dream experience would be to spend time at HKNC learning how to be better, so Marsha I hope you will talk more about that experience. 

Thanks, everyone, for such beautiful and honest sharing.

Deborah

From: NFB-DB <nfb-db-bounces at nfbnet.org> On Behalf Of Marsha Drenth via NFB-DB
Sent: Tuesday, August 17, 2021 1:30 PM
To: NFB Deaf-Blind Division Mailing List <nfb-db at nfbnet.org>
Cc: Marsha Drenth <marsha.drenth at gmail.com>
Subject: Re: [NFB-DB] Identifying as deafblind

Greetings,

Marsha Drenth here. I was born visually impaired first. As I grew older, my vision decreased. I lost all of my usable vision in 2004. As a child I had learned to use a cane and read braille, but never used them since I could still see. It took a few years for me to adjust to vision loss. In 2007, I was diagnosed with a hearing loss and prescribed hearing aids. I didn’t wear those aids since I didn’t like how it made sounds weird or how the aids felt in my ears. In 2011-2012 I had the ost significant hearing loss. I am now considered to be profoundly deaf. I ware two of the most powerful hearings on the market. At home I mostly function as a hearing person, although speech is the hardest for me to hear. Outside of my home its a different story. I attended HKNC in 2013-2014, to learn to be a deafblind person. I use tactile sign language and love PT/Haptics/Hand signals. Although I have been a long time NFB member and grew up culturally hearing blind. I do identify as DeafBlind. Being DeafBlind allows one to fit into 3 different communities. 

The first time I started to accept that I had a hearing loss, was during a tour of HKNC during lunch. Scott might remember this. I was considering attending to learn how to be a Deaf hard of hearing person. It was a normally busy and crowded time. I sat down at the table with Scott in which we started a conversation about technology or something. Then one person sat down, but they could not hear me and I could not hear them. Then another person sat down at the table, Nor could I hear what that person said or what I said. I knew at that point I was no longer alone in the world. We all had trouble hearing each other. No one could see. But it was all okay. So how are we going to make this work. I don’t remember what we did but in the long run I came away from that knowing I am DeafBlind and proud of it. 

That is my story. 

Good day! 

Marsha drenth  

Sent with my IPhone  

Please note that this email communication has been sent using my iPhone. As such, I may have used dictation and had made attempts to mitigate errors. Please do not be hesitant to ask for clarification as necessary. 

On Aug 15, 2021, at 2:56 PM, kg 6sxy (kg6sxy) via NFB-DB <nfb-db at nfbnet.org <mailto:nfb-db at nfbnet.org> > wrote:

For those of you that were not born deafblind, how long did it take you to self identify as deafblind?  My tinnitus has been really driving me around the bend lately where I'm completely deaf more often than not but it still feels like I shouldn't be self identifying as deafblind because I still have functional hearing from time to time. It's probably not important either way, just a matter of not feeling like an imposter, I guess.  Just having a bad week all around.  I appreciate your feedback.

Take care,  
Tony

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