[NFBSF] Vision loss, blind identity, and partial eyesight

Tue Oct 1 13:38:57 UTC 2019

Hi Susan and all,

I woke this morning to see this blooming thread with which I have had much experience and mixed feelings.

Susan's description of her experience over the last couple of years parallels mine, though our vision takes drastically different forms.  For me, most things are blurry, I have a ring of about 1 inch around my head that I can perceive more clarity.  Because this usable vision is on the periphery, it's not something I can use to read or scrutinize anything reliably, in fact this vision usually only serves to disorient me.

I believe we're discussing two different things in this thread: 1) our personal identity and 2) how we describe our vision to others.

I've struggled with both.  As my perceptions change, I still cling to the old ways I'd do things and move to use other techniques and technology to make sense of my world.  Abilities and self-perception are being redefined.     

As my sight has diminished from 20/20 to what it is now, I've struggled to explain to people close to me why I walked passed them without acknowledging them. Words like "loss" help me to convey this progression to those who are curious about my sight into terms they can understand.  I don't think using these terms diminishes my self-identity in any way, and helps me to come to some understanding with people who take 20/20 vision for granted.  To many of them, the term "blind" conveys non-functional eyes that perceive only black.

the way we describe our journeys is personal.  If a term makes you feel bad, by all means don't use the term and let us know that it makes you feel uncomfortable in referring to you with the term.  When it comes to how we describe ourselves, I think that's a personal choice just like choosing to use a cane or work with a dog guide.

Best,
== J 

-----Original Message-----
From: NFBSF <nfbsf-bounces at nfbnet.org> On Behalf Of Susan Kitazawa via NFBSF
Sent: Monday, September 30, 2019 8:31 PM
To: NFB of San Francisco, California List <nfbsf at nfbnet.org>
Cc: Susan Kitazawa <plantpoems at gmail.com>
Subject: Re: [NFBSF] Vision loss, blind identity, and partial eyesight

     Susan Kitazawa here with thoughts on loss and grieving, on blind identity, and on embracing the truth that we each have our own lived experiences and thus our own different perspectives:
     Loss:  Generally this refers to having something that matters to us and then transitioning to not having whatever it was that we had:  a partner, a job, our house keys or smart phone, a role that we once enjoyed. It does not necessarily mean that we were a better person or that we were in a preferred state before the change. It just means  something that was important to us isn’t there now. Sometimes we need to grieve this change, this loss.
      I‘m grieving the loss of the world as I could see it in the past, with all its subtleties and detail. Muted color. The silent, fleeting changes in expressions on my friends’ faces. Glancing quickly at unfamiliar written directions and knowing almost instantly what steps I need to take.
      If you began to lose sensation in your fingers, one finger at a time over several years, never quite knowing when the next finger would go numb, you might feel sad or worried or fearful about this. It doesn’t mean that you were a better person when all your fingers could feel; it’s just the loss of an ability that you once had.
     Blind self-identity: We could argue about this endlessly, just as we could argue about whether Barack Obama is really black. I embrace blindness as part of my identity even though I currently have about 15% of my visual field sort of functioning. Being blind is part of who I am. I can’t read most text. I enjoy listening to authors reading their own writing aloud to me. I can no longer drive. I have learned to love riding the Muni, most of the time. I don’t recognize my friends and family quite often. I’m also partially sighted. I realize that this is a huge convenience in dealing with the world as it is currently set up.
      I’ve heard that some people even think that using the term partial is a put-down of oneself. Maybe they think this means that you’re less than a real sighted person or less than a real blind person or even that somehow you’re only a partial human being. Not so. It’s just a way of communicating what kind of eyesigh many of us have.
     I don’t see anyone, including myself, as more or as less of a person because of different degrees of visual function.
     It doesn’t seem necessary for us to all see things the same way, either literally or figuratively. We can all actively work together to make the world better for everyone. Goodness knows that there is certainly plenty of work to be done!

Sent from Susan’s eyeToy

> On Sep 30, 2019, at 5:07 PM, Daveed Mandell via NFBSF <nfbsf at nfbnet.org> wrote:
> 
> Hello, sister and fellow Federationists: 
> 
> Bryan Bashin mentioned something in his national convention speech which has aroused my interest, given how often the term "vision loss" is bandied about these days in so-called blindness professional circles. He calls it an ableist term. 
> 
> If and when one loses one's vision, isn't that a los, in fact an exceedingly dramatic and often painful loss? Vision is considered by many people to be the most important human sense. If one has relied mainly on one's vision for much of one's life, isn't losing one's vision quite devistating?
> 
> I have been blind since birth, but I have encountered many people who have lost their sight as teenagers and adults. For some the transition has been fairly smooth and easy. But for others it has been utter hell. 
> 
> While I agree that the term "vision loss" is indeed rather negative, isn't it also realistic? 
> 
> Another question I have concerns those people who call themselves "blind", although they have and rely on a substantial amount of functional vision. I believe there is a vast difference between people of this ilk and those of us who are totabbly blind. Now, wait! I'm not engaging here in a pity party! But every bit of functional vision makes life somewhat easier in the often inaccessible, blind-hostile world in which we now live. 
> 
> Comments welcome! 
> 
> Best regards to all,
> 
> Daveed Mandell
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