[NFB-DB] Identifying as deafblind

[Rod and Ele Macdonald]

Hello Heather,

Don't let anyone tell you how you can self-identify. By definition that is a choice you make yourself. Others can tell you that your vision or your hearing or your vision plus your hearing does not qualify for a program or service, provided they have stated eligibility requirements. But how you identify yourself is your own choice.

There is no universally agreed-upon definition of deaf-blindness. In general the "rules" say something such as:

An individual shall meet the definition of deaf-blindness if the individual has both a hearing and a vision loss, the combination of which presents severe problems of communication that the person cannot be  accommodated without both issues being taken into account. An individual shall also meet this definition if the individual has a diagnosed degenerative disorder known to bead to deaf-blindness, such as Usher Syndrome.

That is from memory and is likely not precise, but that is the type of definition programs usually use.

So if you are, for example, legally blind, and your hearing is such that you need amplification or other assistive listening supports - you are definitely deaf-blind according to the generally accepted definition.

But more importantly, it is your choice how you identify yourself.

If you have been told that you can't self-identify as a deaf-blind person, I would suggest you tell that person that he or she does not qualify to make such a determination. If it is a matter of being denied access to a program or service, and you believe you should qualify, seek the assistance of an advocate. Maybe your state disability rights center, or the regional representative from the Helen Keller National Center can help. If you need one-on-one services in order to participate, make that specific request for accommodation.

Rod

 

----- Original Message -----
From: heather Albright via NFB-DB  <nfb-db at nfbnet.org>
To:  nfb-db at nfbnet.org
CC: kd5cbl at gmail.com
Date: Sunday, August 15, 2021 10:37 am
Subject: Re: [NFB-DB] Identifying as deafblind

>
>
> Hi, I was told by other blind persons that I cant identify as deaf blind because, I can still here. But, I cant travel outside alone as I cant hear  the cars coming or hear  others when I go out to places.  I do not always hear my screenreader when it reads to me and someone always says to turn it down, it is to loud. So I use my braille display that I received to read. I am always asking people what over and over, and they get real annoyed with me. But, the same person says I cant identify as deaf blind. So my question is at what point can someone identify as deaf blind. I wanted a guidedog but, they will not put me in the class for deaf-blind and I am afraid I will not get all the information during the training if I do not get one on one training? Any advice?
>  
> Heather 
>  
> Sent from Mail for Windows
>  
> From: Ineko Gary via NFB-DB
> Sent: Sunday, August 15, 2021 3:26 PM
> To: NFB Deaf-Blind Division Mailing List
> Cc: Ineko Gary
> Subject: Re: [NFB-DB] Identifying as deafblind
>  
> Hi Rod
>  
> I want to say thank you so very much for sharing your story. It touches a lot of people when I hear how some one pic came to identify himself or herself as a deaf blind person.
>  
> I am both deaf blind. I went blind at six months old. And as I was growing up a lot of people would ask my stepmom is she legally blind or totally blind. My mom would just say she's blind. But I did not start to lose my hearing until I was the age 11 years old to the age of 14 years old. And I guess learn American Sign Language first. And tactile sign language that handover hand. Then later I learned braille. I only know a tiny bit  of contracted braille. But I know way more of un contracted braille. And I read braille with my left hand. And I do sign language with my left hand. So yes I am a left-handed person. And I've been a guide dog users for 25 years and I've been a long white cane user for 30 years.
>  
> Lots of love always
> INEKO 
>  
> Sent from my iPhone
>  
> On Aug 15, 2021, at 4:14 PM, Rod and Ele Macdonald via NFB-DB <nfb-db at nfbnet.org> wrote:
> 
> ?Tony,
> 
> I have been "legally blind" since I was three, but did not really identify as a "blind" person until much later. I went through that tinnitus phase and know exactly how you feel.
> 
> After spending 12 years at Perkins I sort of knew I was "blind" but more often said I "don't see very well". I changed to "legally blind" about the time I joined NFB in 1973, when I was 31. 
> 
> Similarly, I referred to my hearing situation as "I don't hear very well." Since no physical defect could be found to explain my hearing issue, I was sent to a psychiatrist for six years to find out why I couldn't or wouldn't hear.
> 
> In 1975 an audiologist told me for the first time that I was "deaf". I found that to be a big RELIEF - to know that there was a valid reason for my inability to hear - I hadn't been able to hear speech for years.
> 
> And that was when I found my identity as both a blind person and a deaf person - now a Deaf-Blind person. The emphasis became on the word PERSON. No matter if I  am blind, or bald, or deaf, or have a broken finger - yes, have had or do have all these things, but I am still a 100% human being, and no one can ever take that away from me.
> 
> I also self-identify as "Deaf-Blind" because I self-identify as being from the Blind community AND a part of the Deaf community (but not the Deaf culture - I do not use American Sign Language). I hyphenate the two words because my two very-dissimilar disabilities are combined, not merged. I might use the analogy that I have a right hand and a left hand, but that does not mean I am ambidextrous - I am right-handed, but I read braille with my left hand. Both hands are equally important to me, but I do have two separate hands.
> 
> So to answer your question: For me, the point at which I self-identified as a Deaf-Blind person came when I accepted myself, and presented myself to others, as a Deaf-Blind person, without denial, arrogance or pretense. For me that came in 1979, when I joined the AADB.
> 
> Rod
> 
> 
> ----- Original Message -----
> From: kg 6sxy \(kg6sxy\) via NFB-DB  <nfb-db at nfbnet.org>
> To:  nfb-db at nfbnet.org
> CC: kg6sxy at gmail.com
> Date: Sunday, August 15, 2021 11:55 am
> Subject: [NFB-DB] Identifying as deafblind
> 
>> 
>> 
>> 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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