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The NFB:AE The Missing Link

Editor's Note: Joyce Mainland is a tough-minded, clear-thinking, and compassionate advocate. As the parent of a fourteen year-old daughter who is blind, she has experienced the joys, sorrows, and frustrations of seeking educational services. Here is her story:

This summer I discovered, along with my 14 year-old daughter, Sarah (who has been blind since birth), what, for lack of a better name, I will call the 'missing link'. That 'missing link' is: the NFB (National Federation of the Blind) or in Canada, the NFB:AE (National Federation of the Blind: Advocates for Equality).

As a parent I have struggled over the years to learn what I could do for my child. My journey first led me to the CNIB (Canadian National Institute for the Blind). Where else does one go? After all, the CNIB is the only agency in Canada that serves the blind. I naively thought that they would have the answers for me. Given their position of prominence, who should know more? I was frustrated by what I felt was often inadequate service and information. I read everything I could get my hands on I learned to read and write Braille (tedious, but not difficult) I have advocated before government agencies and legislatures along with other parents. We expressed our concerns regarding educational services for blind children. I have gone as far as moving 3,000 miles in order for my daughter to access the only remaining school in Canada which specializes in the education of the blind and deaf/blind. (Some professionals would call this segregation, but I know better and would call it congregation!)

I have seen so many families over the years both in B.C. and Ontario with children in circumstances similar to mine. They were all falling between the cracks I have seen parents like myself, frustrated and struggling to find resources, guidance and support I have seen both the mainstream and the congregated settings. I have experienced the vast discrepancies of services and programs for the blind across Canada. But the most frustrating thing of all is the experience of not being heard or listened to -- until now.

My daughter and I were fortunate to have attended the NFB Convention in Anaheim, California, along with 60 other Canadians. There were over 3,500 in attendance from across the U.S.A. Never had I seen so many white canes and dog guides in one place at one time! There were people from all walks of life, all ages and abilities. There was an overwhelming sense of family and belonging. It was the blind community.

We talked about common issues and concerns. We shared strategies and solutions. We laughed and cried, sharing both joys and sorrows, and we relaxed in the company of each other. I had the feeling that I had finally found what I had been searching for all these years -- 'the missing link'. I now believe that in the collective experience and knowledge of these people who have walked the walk and talked the talk, there is strength. While I am concerned about the whole, my focus as a parent is for the children and the future employable youth and adults.

As a parent, I want to empower my child with a positive attitude about herself and her blindness. I want to provide her with a knowledge that she CAN become all that she wishes. The students at the W. Ross Macdonald School for the Visually Impaired in Brantford, Ontario, had a saying written on the wall that said something like this: "We see ourselves as differently abled . . . but without education and the skills . . . we will become disabled!" The blind have spoken.

If the current and unacceptable situation is allowed to continue in Canada, what is to become of the 8,000 children affected by vision loss?

Presently, the education specific to the blind/visually impaired is deemed by the Federal Government to be a provincial concern. I believe and respectfully argue that the education of the blind (which should start from the time of diagnosis) is a national concern and should receive national attention and funding. For if these children DO NOT receive an adequate and appropriate education and the needed skills, it will be the Federal Government who will support them on a disability pension! This should not be viewed as an acceptable solution. We should be doing everything we can to create opportunities that will lead them into self-sufficient lives as tax-paying Canadian citizens.

But how does one go about changing and enlightening the attitudes and minds of the those who hold the power that affects the outcome of the lives of our children?

How does one go about educating the general public and correcting a gross misperception that the CNIB is able to do everything for the blind, without offending this agency or causing them to become defensive?

I truly believe that the time has come for the blind community in Canada to unite, with the blind helping and mentoring the blind in Canada. Through the philosophy and hard work of parents and blind adults in the NFB:AE, we can empower blind people and re-educate the general public and governments. Together, we can ensure positive change.

I would encourage anyone whose life has been affected by vision loss to seek out an NFB:AE chapter in your area and get involved. The blind and consumers of services for the blind must have a voice that is not only heard but listened to. Together we can find effective solutions.

Comments

thank you good

thank you good