[Nfbmo] Talking about going blind

[Gary Wunder]

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.