Braille Monitor                                    July 2018

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Transition to Blindness: A Conversation That Should Happen in the Federation

by Debbie Wunder

Debbie WunderFrom the Editor: Debbie Wunder is my wife, so forget my being detached or objective. I like the initiative she proposed to our Missouri affiliate, and I’m pleased about the story she has to tell.

Since I have been totally blind since birth, I have little to contribute to the discussion of what it is to transition to blindness, but as a Federationist I have every reason to want to know about any experience that people share because of it. I am naturally curious, but, more than this, I am under an obligation to learn so that I may be the best ambassador for the organization that I can. Reaching out and engaging is more than knowing how to deliver our message; it is also knowing the audience for that message and in many cases doing a lot of listening. I have been on some of these calls and enjoy the honesty and wide-ranging discussions the group has, and hats off to our affiliate for welcoming the challenge. Here is how Debbie tells the story:

I have always been blind, but only within the last few years have I lost all of my vision. My predominant reaction to vision loss has been surprise: surprise at how much I used my vision, surprise at the grief I had in losing it, and surprise at how reluctant I have been to talk about it in the NFB, where everyone seems to have adjusted to it without the pain or the difficulty I have experienced.

Because I believe in the NFB and feel we should be involved in all things blindness-related, I asked our affiliate if we could host a monthly transition to blindness group using a telephone conference service. Many were a bit scared by the request: would this be something positive, or would it be a poor-pity-me group? Would it bring people down, or did we have the answers to help build them up? Despite the concerns, the consensus was that the NFB should talk about all aspects of blindness and that ours should not be the group you came to only after you had it all figured out.

Several wonderful things have come from our calls. Because many of us are new to the kind of blindness we are experiencing, we have seen an openness to asking questions without the fear our questions will be regarded as foolish or silly. Our assumption that we were in an organization whose members already had it figured out was wrong. Some of the veteran Federationists who come to our meetings have indeed experienced what we have and are able to give us constructive answers, but a surprising number come with their own questions, and this kind of openness and honesty helps to build unity where once we felt an almost unbridgeable distance.

We have shared techniques that are making a real difference to participants in our calls. How do you keep track of your children at school events, and does it help that you are in the stands when they know you can’t see? At a group event in which your children are involved, how do you supervise them? In independent travel how do you learn to get around new places without calling on a mobility instructor for orientation? Am I a poor excuse for a Federationist if I grieve over the loss of things for which there are no alternative techniques—seeing the faces of my loved ones, not seeing the pictures of my children and grandchildren, feeling sadness at not knowing how to pursue my favorite hobby—photography?

Then there are the unexpected things we share among the group: “I was reconciled to the fact that I was going blind because of glaucoma, but when I found it would be my cornea that took my sight, I was unexpectedly sad. I don’t know why, but I felt gypped because my cause of blindness had changed.”

Another Federationist said, “I have always been an active member of my church. Recently, while attending a shower for a member, I went to bite into a cupcake topped with a wonderful fluffy icing. I got the icing on my face. I went to pick up my napkin, and before I could wipe the icing away, someone pushed my head back and proceeded to wipe my face. I didn’t know what to say or do, but I knew I felt humiliated. I don’t want to stop participating, but what do I do with the feelings, and how do I address the situation?”

As we listen to the questions of others, we are reminded of how important it is to remember what it was like when we were the ones with the questions. It is too easy to forget the skepticism we felt when approached with the message of the NFB once it has become a vital part of our lives. But getting back to that place is a necessity in talking to others and in turn helps us be grateful for the changes the Federation has made in our lives.

The techniques and attitudes we have been able to share are nothing short of a blessing. Getting the tools and having the courage to use them is a tremendous gift to give one another. But the most beautiful thing that has come from our calls is the understanding that the NFB cares about all blind people. How liberating it is to learn that it is just as safe to talk about our struggles as it is our successes and that we are not lesser Federationists because sometimes we hurt about things we have lost. What a relief to know that on some days all of us have to work hard to see the beauty in what lies ahead rather than dwelling on what was in the past and will never be again. The love that characterizes our movement is so abundant and is here for the taking by those of us still struggling with the loss of sight. This affirmation has meant the world to those of us who want to acknowledge what we feel and what we fear. At the same time we have come to know that many members in the organization we love have felt the same way and yet have come to put blindness in a place that does not define them or their future. In our fellow Federationists’ listening ears we find hope, and in their examples we are strengthened in our determination. There is a place for us in the NFB, and knowing that place allows us to be ambassadors to others who have hurt as we have hurt and doubted as we have doubted. We will not hide from blindness or its challenges, and we will not hide our emotional struggles from those who are the most invested in helping us.

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