[Nfbmo] Talking about going blind

Carol cmcares at att.net
Mon Feb 15 17:19:49 UTC 2016


I have to agree with Gary that Cole about blindness was the most interesting heartfelt call I have been on. It was like having a support group right in your own home. I am so glad we have decided we're going to do this on a monthly basis. It is so nice to find out you're not out there all alone thanks Debbie for the ideal and making it happen.

Sent from my iPhone

> On Feb 12, 2016, at 6:18 PM, Gary Wunder via Nfbmo <nfbmo at nfbnet.org> wrote:
> 
> 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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