Future Reflections Fall 2007
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by Gary Wunder
Editorís Note: Itís not uncommon for aunts, uncles, cousins, and most especially grandparents to reach out for resources and information when a beloved baby or young child in their family is diagnosed with blindness. These days, many of those searching for information find the National Federation of the Blind (NFB) and the National Organization of Parents of Blind Children (NOPBC) on our Web site at <www.nfb.org> and <www.nfb.org/nopbc>. Some of those who read our material will also send us e-mails asking for additional encouragement and help. Sometimes these letters ask for very detailed, specific help--such as sources of funding for medical procedures--but usually not. Usually, the letters are short and vague. Sometimes a bit of sadness or fear is evident, but not always. What is really wanted must be read in the spaces between the lines. One such grandmother contacted me recently, and when I replied I also suggested (as I always try to do) that she contact the NFB state affiliate president in the state in which she lives. In this case, it was Gary Wunder, president of the NFB of Missouri. The grandmother did write to him and, with sensitivity and insight, Gary read between the lines and answered the question that weighed most heavily on her heart. Here is what he said:
From: Gary Wunder
Sent: Thursday, April 26, 2007
Subject: The blessing of your new grandson
First, let me begin by telling you how glad I am you have written to us. We are very willing to help. No one chooses to be blind, and your sadness is understandable. Even with a good attitude and positive information, the grief you feel will take some time to work through. Equally true, however, is that blindness does not have to be the most important characteristic in your grandsonís life, and with proper training and opportunity, blindness can be reduced to the level of a nuisance and an inconvenience.
When you read this, you may be tempted to think you are getting hype and spin, but I assure you that my life and the lives of many others affirm these statements. Our job as blind people, and your new job as one who cares about a blind person, is to make sure that training and opportunity are both made available to your grandson.
It is our job because we who are blind have the most to lose or gain through good public policy, and because we feel a special kinship with other blind people--especially blind children with whom we feel a special bond and responsibility.
So what is good training? For someone like Matthew it starts with providing stimulation--things he can feel, hear, taste, and smell. It means thinking about what others get through sight and trying to be sure he gets it some other way. Too many blind children are initially diagnosed as developmentally disabled or mentally retarded because, lacking stimulation, they donít do at various stages those things used to judge age-appropriate progress. So, the toys which swing should also ring, the lights can be replaced with sounds, and thereís no substitute for holding and talking to the child. When language begins to be understood, let some of that talk focus on whatís around. Ask yourself: what of interest do I see, and what are people doing and why is that interesting? Then tell him about it.
In writing this out, it sounds like a forced prescription, but what Iím really talking about is cultivating a natural behavior. At first Matthew will simply receive, but later heíll take an active part in telling you what he wants to know more about. Your job, at least at first, is to let him know there are things worth knowing.
As Matthew gets older your challenge will be to get him into a preschool program, or perhaps even before that, some kind of day care. Youíll have to be aware that while Matthewís social involvement with other children begins with physically being present, that physical presence is no guarantee of inclusion. When the children are playing games, is he a player or a spectator? Most of the time he should be a participant, and most games are easily modified if, indeed, they require any modification at all.
There probably isnít much benefit in going further at this point about how to make sure he has his books in elementary school, the challenges of dating, and how he will fill out college admission papers. All the concepts are the same--accept that Matthew is blind, expect normal age-appropriate behavior, and help convince him that to be blind is okay. And if you donít see this happening, talk with us, the blind members of the NFB, and perhaps with other people if there are other conditions or disabilities that are a part of his life situation.
Just one last thought: all of this will be real for your grandson only if you believe it and work to see that it happens. Matthew will grow up with good attitudes and normal expectations if the blind people he sees around him expect it of him, and if you do, too. You and other adults in his life are more likely to have the same expectations of him if you see them lived out in the lives of the blind people you come to know, love, and trust.
Matthewís future will depend on the future we together help to shape. Right now we spend a lot of time trying to make computers give us the same information with Braille and speech that you use your eyes to get from a computer screen. Our success will determine whether Matthew gets an education and a job. Right now weíre working to ensure that home electronics are usable without vision; more and more the easy-to-use knobs and switches on these devices are being replaced with touch screens and computers which could, but do not, talk.
When Matthew is old enough to take his long white cane in hand and go to the store for Mom, we want to ensure that cars still emit enough usable sound that he can determine when it is safe to cross the street. New hybrids and electric vehicles threaten the sound on which we have relied for a century, but weíre making important people aware of the problem and they want to help. I was at a conference of automobile engineers a week ago, and they were excited to learn about a need they could meet to build a better, safer vehicle.
I know my letter is far longer than yours, but I assure you that not all blind people are so long-winded. Some are actually articulate and concise.
Please write back and letís consider a visit. I live in Columbia but we have chapters in many parts of the state. Having your address and a phone number would help and feel free to call me, too.
Gary Wunder, President
National Federation of the Blind of Missouri
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