by Sarah J. Blake
Often on the mailing list I moderate for families of children who are blind and visually impaired, parents ask where they can go to network with other families of visually impaired children and meet blind adults. I feel pangs of disappointment as the responses flow in from members of the NFB’s Parents of Blind Children. A few list members — including me — may mention the National Association of Parents of the Visually Impaired (NAPVI), which is associated with the ACB. However, I have to admit that the NFB does a much better job than the ACB does in terms of supporting parents and their blind children.
The bias that results concerns me. Although I am very much in favor of all of us in the blindness community working together on behalf of blind children and their families whenever possible, and, for the most part, I fully support the active involvement of the Parents of Blind Children, I also recognize that the two blind consumer organizations exist because of certain significant differences of philosophy and attitude. These differences are not justification for ACB’s much lower profile with respect to visually impaired children and their families. By ignoring the issue of parents’ needs and simply referring families to NAPVI, we are doing a great disservice to the parents, the children, and, in fact, to the American Council of the Blind.
When I was about nine years old, my parents sought out the only blind adult known to them. He was a college student who attended our church. They wanted to ask him questions. I, too, wanted to ask him questions! At the time, as a mainstreamed student in a public elementary school, I knew no other children whose vision was as limited as my own, who, like me, envisioned a future that could contain college.
Finally, I had a chance to meet that blind college student. I remember that day like it was yesterday. At a church supper, my mom took me to his table. He greeted me briefly, but then he turned his head back to his food, and my mother took me back to our table.
Later, my mom told me that he had said, if my family allowed me to live only in the world of blindness, I would never be prepared for life in the sighted world. My mother explained that, apparently, he did not know — or care — that I was not acquainted with any other blind people and that I spent my days feeling separate and alone in classes with only sighted students.
My family continued to plod along, doing the best they could to teach me about life and provide me with the resources I needed. About six years later, my family and I discovered the excellent outreach and support activities sponsored by the Texas Commission for the Blind and the Houston Lighthouse. Many of those activities were designed to allow blind and visually impaired teenagers to network with each other and with blind adults. Other activities were structured to facilitate networking opportunities for parents. The most important thing about all these events was that they allowed me and my family to finally get to know blind adults. Most of those adults happened to be members of the ACB of Texas. Their dedication and willingness to reach out and spend time with me and my family made a lasting impression on all of us. I knew about the NFB back then, but I gravitated toward the organization whose members had shown a non-judgmental interest in me as a person, who had given of themselves to learn who I was and to share their accumulated wisdom.
We all have the ability to influence our local communities in this way. The need of parents is a twofold one. They need to meet other parents of children who are blind and visually impaired, and they need to meet blind adults. In today's push for empowerment, the families of young blind children are hungry for support and contact with each other and with blind adults. The NFB is there and waiting to meet these needs. By the time many children are old enough to become members of the ACB, their families have already been involved with the NFB for many years. Is it any wonder that so few young visually impaired people are joining the American Council of the Blind?
We in the ACB need to find ways to get more involved with families of young children. We need to involve them in our local meetings and support them as they work to raise their blind children. Our involvement with families of young blind children will benefit parents and children by exposing them to mentors. When we listen to their concerns, we can help families procure the very best services for their children, and we can help parents to understand that a diagnosis of visual impairment is not a sentence to second-class citizenship. Our caring outreach and involvement will also benefit us as an organization, for, as we welcome a group of young children who can grow up to be strong leaders in the American Council of the Blind, we will be extending our own ACB family and investing wisely in our shared future.