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What's a Parent to Do?

Editor's Note: Archie and Sigrid McNab are thoughtful and committed parents. When they learned that their daughter Maddy was blind they set out to search for answers. Their struggle is mirrored in the lives of families all across Canada. If I were a gambler, I would say it is a sure bet that Maddy will grow up to make a satisfying life for herself. It will happen because of the dedication of Archie and Sigrid and because of the commitment of the rest of us to see that the future is bright for blind children. Here is the McNab's story:

What's a parent to do? As parents of a blind six year old daughter, it's a question that we've often asked ourselves. You are never really sure that the deciisions you are making are theright ones. You never feel that you have enough information or answers. Sometimes it's very difficult to know what to do, but often one thing is clear and that is-if it's going to get done, it will have to be done by you because no one else is going to do it for you.

Often what we are looking for, almost as much as answers, is reassurance. Reassurance that we are doing all that our child needs to have equal opportunities, that we are doing the best we can as parents, and that all the hard work and tears are worth it.

Well, we've certainly looked hard for answers, information, and reassurance, and I guess we are still looking. And if I were a gambler, I would bet we will still be looking in the future. But we won't have to look quite as hard as we used to. Oh, I don't mean we will quit trying or that we have already found all we were searching for. What I mean to say is, that we have found an organization that has been down this road before, many, many times.

We've watched parent's groups come and go. We've been in on the birth of a small group, have participated in others in one capacity or another, and have seen others simply disappear. Some groups have been uplifting and informative and others, a huge disappointment. At times, we have found what we thought were solutions, but did not have the ability or the power necessary to affect change. The entire process can be intimidating, de-humanizing and frustrating. But you are a parent, so you press on. A well-known parent advocate was once asked by another parent "Why do we have to fight for everything?" The response was, "Of course you shouldn't have to fight for everything . . . but of course you have to, or you won't get it."

The problem is that you get tired of fighting and you just can't afford it. Not just from a monetary point of view, but also because every struggle takes time. Time away from your child and time away from the rest of your family. Time you just don't have. You tend to get the feeling "It's me against the world" and this, as all of you who have been there know, is not a good thing.

So what's a parent to do? Well, I'll tell you what we have done. Over the past two years we have become aware of an organization in the United States called the National Federation of the Blind (NFB). We were put in contact with their Canadian counterparts-The National Federation of the Blind:Advocates for Equality (NFB:AE). Their members filled us in on the organization and their objectives. When my wife, Sigrid, was talking to them she was told that they would help defray the costs of our family attending the NFB conference in Anaheim, California, held in late June 1996. I told Sigrid that I couldn't believe it. Why would an organization which had never heard of us, go to that extent to help us? We had no idea at the time just how committed the Federation is to increasing quality of life for the blind. We talked it over and decided, "Well, let's go and see what it is about."How can you refuse to attend something being held directly across the street from Disneyland?

We were totally unprepared for the size and scope of the convention. I don't know exactly what we expected, but it wasn't anywhere close to what we experienced. To be surrounded by thousands of blind people in one hotel is a moving experience for a parent of a blind child, I can assure you. It was possible to feel a little of what it is like to be a minority for there were many occasions where the blind vastly outnumbered the sighted. For us, it was a unique opportunity to see all those people, both blind and sighted, going about their business of everyday life at a convention. It went a long way to dispel the doubt that parents of blind children tend to develop. When you have limited exposure to blind adults and to other blind children, it is easy to wonder just exactly what your child's life will turn out to be like. It shouldn't come as a surprise, but it did, that blind people are no different than everyone else. Some are good speakers, some aren't. Some are good listeners, some aren't. Some go through life with determination and some don't. As with sighted people, if the blind are not given an opportunity for a good education early in life, it causes long-term consequences later. At the convention it wasn't difficult to identify those who had received training in blindness skills and those who had not.

We attended many topical workshops put on by the top experts in North America. We had a chance to network with other parents and professionals and to find out what people are doing elsewhere. We collected more information on blindness in one week than we had accumulated in the previous four years. Over and over we heard the message. It's OK to be blind. It's not OK to consider yourself "hard of seeing". Being blind is respectable. In Anaheim, we saw literally thousands of blind people who are living that axiom. We were impressed.

We feel that the single most important thing that we have done for our daughter was to attend that convention and subsequently to join the NFB:AE. It has given us, and in turn her, access to the most powerful blind consumer group on the continent. Our daughter will grow up with the knowledge that she is not alone. She is not unique (except to us, of course), she is blind, nothing more, nothing less. That fact alone does not change who she is, anymore than her being our daughter changes us. We are who we are. Acceptance of that is a major hurdle for most people who interact with blind people. People are funny that way. I am sure, as a parent, you have seen all kinds of reactions to your child. Some people are helpful, some patronizingly so, but most are just afraid. They are afraid of what to say or do. They don't know how to react, so most just avoid you. You know the kind. They are pasted up against the canned goods at the grocery store when you and your child come up the aisle. They don't mean any harm, they just don't know what to do.

By having an organization like the NFB:AE and its divisions, the message is slowly getting out there. Every time that your child or any other blind person goes anywhere that people gather, they are educating the rest of us. I didn't have the opportunity to know a blind person when I grew up and until our daughter came along, I was uncomfortable around blind people. That's changed of course, but when I see the reactions of Maddy's playmates and peers I realize they have a tremendous advantage-they won't grow up afraid and unsure of what to do.

Once we became aware of the objectives of the NFB:AE and joined as members, we realized that we don't have to be afraid anymore either. We have access to one of the best support systems around. They may not have all the answers, but for most of the questions they do, or they know someone who does. The number and quality of the professionals that work with the blind who are members of the NFB and NFB:AE is amazing.

This spring the NFB:AE gave parents the opportunity to form a parents' division. To us it was like a dream come true. To have a province-wide parents' group supported by an organization like the NFB:AE was previously just a hope in our minds. Without a province-wide organization it is difficult for any group of parents of children and youth who are blind, or have low vision, to have any real clout. Parents are more or less forced to take whatever services are given to their child or they have to fight all the battles alone. Which brings us back to where we started: WHAT'S A PARENT TO DO? Well, I think you should join the Blind Children & Youth: Parents' Association of British Columbia (BCYPA) and let us help you and in the process have you help us. Life is not, nor should it ever be, a one way street.

In the next issue of The Canadian Blind Monitor, I will tell you more about this brand new division and what we are up to. What follows is a membership application for the Blind Children & Youth: Parents Association of British Columbia. We look forward to hearing from you!