[Nfbmo] Talking about going blind

Sun Feb 14 02:25:30 UTC 2016

Thank you Daniel for sharing I am here if you need to talk carol Morgan

Sent from my iPhone

> On Feb 12, 2016, at 8:59 PM, Daniel Garcia via Nfbmo <nfbmo at nfbnet.org> wrote:
> 
> OK, I'll jump in and I will tell the broader group what I discussed on Wednesday night at the conference.
> 
> I am 40 years old and I have glaucoma. My left eye was removed when I was not even 2 years old. I know many totally blind people who became totally blind due to glaucoma. At this point, I have some light perception and hand motion as far as vision goes. This vision is, for the most part,not very usable so I rely on the alternative techniques of blindness to do what others do with their eyes. I do not think I will be able to run out the clock. I hope I am wrong, but I also have to be realistic; it is very probable I will become totally blind in a few years. I always felt hesitant to share with people, especially members of the NFB, the fact that the prospect of going totally blind scares me. This idea seemed to me incompatible with our proven positive philosophy of blindness.
> 
> What I learned on Wednesday night is that I am not the only one that feels this way and that feeling this way does not make anyone any less of a Federationist. What matters is how one responds to this fear and that is it OK to ask for help.
> 
> Best Regards
> 
> Daniel Garcia
> 
> 
> -----Original Message-----
> From: Nfbmo [mailto:nfbmo-bounces at nfbnet.org] On Behalf Of Gary Wunder via Nfbmo
> Sent: Friday, February 12, 2016 6:18 PM
> To: 'NFB of Missouri Mailing List'
> Cc: Gary Wunder
> Subject: Re: [Nfbmo] Talking about going blind
> 
> Last Wednesday evening I attended one of the most interesting Federation
> events I've ever witnessed. The meeting was held by conference call, and its
> purpose was to discuss something that we don't often spend much time on in
> the National Federation of the Blind: talking about that transition from
> site to blindness or from little sight to less sight or no sight at all.
> Since we do not focus our efforts on prevention of blindness, the major
> thrust of what we do is work with people who are blind: getting them to
> accept it, embracing the techniques that can once again make them
> independent, and emphasizing over and over again that in fact there is life
> after blindness and it can be a quality one at that.
> 
> As important as this message is for us to transmit and for others to hear,
> what sometimes gets lost are the feelings one goes through in transition.
> Our rejection of the hierarchy of sight and our emphasis on using
> alternative techniques sometimes sends messages we do not intend. Should one
> feel guilty about having vision? The assertion seems laughable, but many who
> have some vision feel that it should be hidden when around the totally blind
> in the same way that they feel hiding their lack of vision should be the
> mode in which they operate when around fully sighted people.
> 
> My participation in this telephone conference was predominately as a silent
> observer. I have been blind since birth and have little of interest to offer
> on this topic. I did not want to subtly influence the direction the group
> would take or how it might feel about revealing feelings that are sometimes
> difficult to identify and articulate. Last but not least, I was out grocery
> shopping and felt that having my phone remain on mute was the only courteous
> way to participate. Here are some of the points I gathered from the call,
> and I hope that others who participated will do a better job than I can do
> in explaining what was said and what it all meant.
> 
> One participant talked about the anguish he feels when going to the eye
> doctor. He knows that he can function without vision, but he also knows that
> he treasures the vision he has. Visiting the doctor might mean an exam that
> reveals some degradation of the eye, might lead to surgery with an unknown
> outcome. But beyond the physical concerns he feels, he is bothered by what
> he perceives as a contradiction between believing that it is okay to be
> blind and being grateful for the sight that he has.
> 
> Another participant talked about how difficult it is to be productive with
> technology. Those who can see one him to use their techniques, but, lacking
> vision, these are inefficient. Those who are totally blind want him to use
> their techniques, ignoring the fact that what sight he has is still
> fundamental to how he navigates the computer as well as to how he reads and
> writes. He loves the seminars that we have that focus on technology, but he
> comes away feeling that very little has been offered to help him. Where are
> demonstrations of the closed circuit televisions? Where are demonstrations
> of the screen enlargement software that help people access the computer?
> Certainly with all the technology that gets discussed in all the expertise
> we have in a room, there must be some time to devote to how one integrates
> low vision into the experience of reading, writing, and efficiently using a
> computer.
> 
> One person talked about the difficulty in sharing how he feels about going
> blind with people who have already made the transition and made it look easy
> or with people who have never had to make the transition, have never enjoyed
> the blessings that a little bit of vision can bring, and who may well decide
> that the person expressing his hurt and anxiety is whining for no reason.
> Put a bit differently, how can a man with tattered shoes complain when he
> sees so many who function quite well without shoes?
> 
> One member of the group was quite candid in saying that he has spent a
> considerable amount of time crying over recent changes in his vision, and
> that one of the most difficult parts of his day-to-day existence is that the
> vision he has can so quickly change. Not only can he not explain to others
> what he sees and cannot see, but he has no idea from day to day or even hour
> to hour what he can count on his vision to help them do. Dealing with vision
> loss is exhausting, but riding the roller coaster of continued visual
> fluctuation is almost harder.
> 
> I think the consensus of the group was that we must acknowledge our feelings
> and talk through them with those who understand. We must have the faith to
> believe that even those who have not shared our experiences care enough
> about us to listen and to offer what comfort there is in an attentive ear
> and a genuinely open heart.
> 
> As an organizational take away, it seems to me there are several things we
> can do. We can be more inclusive in our seminars and ensure that not all of
> our presentations are aimed at the totally or nearly totally blind. We can
> make it clear that our assertion that it is respectable to be blind is no
> less true for those with some remaining vision than it is for the totally
> blind. We must proclaim clearly and forcefully that vision is something we
> value, whether we have it or not, and that encouraging people to rely on
> alternative techniques when their vision is not adequate to the task is very
> different from being opposed to the use of the vision they have. We should
> make certain that all of us, whether we can see some or none at all,
> understand the sense of loss that is felt whenever one finds one of her
> senses diminished, that this process takes time, adjustment, and the
> understanding of those who love us. None of this diminishes our message that
> blind people need to learn the techniques that led us be efficient and
> successful, but never should we let this message push people away who want,
> need, and who desperately want to contribute to what we are all about:
> making life better for blind people.
> 
> I throw all of this out for discussion, hoping that I have not violated any
> confidences or identified anyone and what they shared in a way that would
> make them uncomfortable. As I said earlier, I have no expertise to bring to
> any of this, and my only goal is to see that we create the kind of warm and
> loving family that the Federation represents for me.
> 
> 
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