'American Action Fund for Blind Children and Adults
Future Reflections
       Convention 2019      NOPBC BOARD MEETING

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Delora's Boy

by Anil Lewis

Anil LewisIntroduction by Carlton Anne Cook Walker: Anil Lewis has been a friend and godparent to our children for many years. We owe him so much, and we always love to hear from him! Please welcome Anil Lewis!

My name is Anil Lewis. I'm Delora's boy. Delora Lewis was my mother, who passed away several years ago. She always made sure I was dressed properly and behaved properly when I went out of the house. If I didn't behave properly, she'd say, "Don't tell anybody that you're Delora's boy!"

I'm very proud to be Delora's boy. My father passed when I was six years old, and my mother had to raise four kids all by herself, three of them blind. My brother lost his sight early on. My sister lost hers a bit later, and I became blind at the age of twenty-five.

My eldest brother lost his sight when he was in grade school. When he became blind my mom felt guilty. She was afraid his blindness was caused by something she did during her pregnancy. I don't think she lived a lifestyle that would have endangered her unborn child. Even if she had, feeling guilty wasn't going to do anyone any good. So if you're carrying guilt with you about your child's blindness, let it go. It's not healthy, it's not helpful, and it's not deserved. Life happens—that's just reality.

My mother had a lot to deal with besides my brother being blind. My brother and I both were diagnosed as being what today would be called developmentally disabled. My mom told the school, "Well, if they are developmentally disabled, you have to provide services to help them become competitive." We went to summer school and things like that, and a couple of years later, when I was in fourth grade, the school said, "Mrs. Lewis, we'd like to put your son in the gifted program!" How do you reconcile that? Well, “developmentally disabled,” “gifted”—they're all just labels.

When I was diagnosed with a developmental disability, I hung out with kids who didn't seem to have much of a future. When I became part of the gifted program, I found myself in a group of elitists who thought they were better than everyone else. It was an interesting change. Am I developmentally disabled, or am I gifted? Regardless of the label, we all share certain characteristics. Labels don't define who we are or the goals we can reach.

Through her struggle to provide for us as a single mother, my mom made it possible for me to become who I am. But she did not find the Federation when she was raising my brother as a blind child. She turned to the professionals. They told her, "Your son sees well enough to read print. He doesn't need Braille." They said, "He has enough vision to travel around. He doesn't need to use a white cane." He went through the educational environment without any training in blindness skills.

My brother had to drop out of college because he didn't have the skills to keep up. Later he went to the state rehab program, and they said, "We don't need to provide you with blindness skills training. We're going to get you a job." The rehab agency got my brother a job as a file clerk. With his very limited vision he wore big Coke-bottle glasses. He had to take a magnifying glass and go into a dark, dingy file room. He had to get down on his knees to read the names on the file folders. The optics alone were enough to set the earth on fire in one big whoosh! Not too surprisingly, he didn't keep that job for very long.

If she had had the tools back when my brother was in school, my mother would have insisted that he take the National Reading Media Assessment. The school system would have found out that he could be a dual media learner. He had enough functional vision to read large print, but he experienced significant fatigue, and standard print was completely unreadable for him. Braille would have been very helpful.

Sometimes I hear people say that we in the Federation try to make children blind. Actually, we're not trying to make children blind; certain misguided professionals are trying to make blind children sighted! In this organization we want people to have the tools they need to complete the task at hand. We want people to be able to use their functional vision when it serves them. We want to make sure that people who can benefit from Braille have the option of learning to use it. We want them to have the option of using assistive technology. We're invested in giving our children as many tools as they need to help them be successful.

A cane is not just a tool for people who are totally blind. As my friend Maurice Peret says, "The cane is a low vision tool, and it helps people travel effectively."

Let me tell you about a good friend of mine who has low vision. One day we were going to lunch, and she left her cane up in her room. She told me, "Don't worry, I'll get it when I go back." We walked along on our way to lunch, and all of a sudden she disappeared! Just vanished! We had come to an unexpected flight of steps, and down she went! At that point she said to me, "I guess I should have brought my cane after all."

She picked herself up, and we continued on our way. All of a sudden she stopped short. There was a shadow on the ground, and she thought it was a building.

My brother is smart as a whip. He learned to do math in his head because they didn't give him any choice. I believe that my brother had much more potential, more intelligence, and more charisma than I have. Today he is unemployed and living in Section 8 housing on Social Security. That didn't have to be his reality. There is always hope, I firmly believe that. But so much has been done to institutionalize him that it would be extremely difficult for him to break through the barriers and discover his true abilities.

I don't want anything like that to happen to your kids! I want us to get involved with them as early as possible. I want us to head off any attempt to make them think they don't have the capacity to succeed in this world. I want those negative messages to fall on the floor and be smashed and trampled under our feet! Regardless of the situation you're dealing with, you are in a place that will give you the love and support you and your child need.

Love is behind the many programs we have developed for your children here in the Federation. The Braille Reading Pals program helps parents set the expectation that their blind children will be literate. My son is sighted, and when he was small I read to him from print/Braille Twin Vision books. He started to read at age two. Is he gifted? No! But he had a dad who kept putting reading materials in front of him. I'll never forget one time when we got one of those books, and my son started sounding out the words. Now, it wasn't A Tale of Two Cities, I assure you! It was one of those books about Frog and Toad. But nonetheless, he was figuring out how to read it.

Can our blind kids do that, too? Of course they can! We have to give them the opportunity and have the expectation that they'll be able to do it. That's why Braille Reading Pals sends out free books and information to parents of blind children.

In addition, we offer the Early Explorers program. We'll send your child a little white cane—to me it's more like a toothpick! We want parents to understand that they are their children's first travel instructors. You don't need a master's degree to teach your child that the cane is a tool of independence. No, your two-year-old isn't ready to say, "Bye, Mom! I'm going to the store!" But we don't want your children to graduate from high school and finally get exposed to the long white cane for the first time. That would be like expecting them to walk barefoot until they graduate!

I strongly encourage you to go to our website and sign up for Braille Reading Pals and Early Explorers. But the program I most want to offer you doesn't appear anywhere on our website. The program I want to offer to you exists right here within this room. Individuals right here have a wealth of lived experience. They have dealt with some of the issues you may feel are insurmountable, and they're here to be resources for you. And believe it or not, you yourself can be a resource to them and to this organization. We need you to be active participants in the National Organization of Parents of Blind Children. If there are obstacles in your children's paths, you need to let us know. We can work collectively as a family to eliminate those obstacles and develop innovative programs for the next generation.

We can disseminate our ideas across the country. We can make sure that blind kids whose parents don't have the resources to attend our convention can benefit from the work we do. As executive director of blindness initiatives, it is my job to develop and support programs and projects that affect every blind person from birth to earth. We can do that because we draw upon the lived experience of all of you. We recognize the problems you are going through, and we celebrate your successes.

By being here you have expressed a commitment to your children. I pledge my support for your desire to create the best possible future for them. I stand committed to that pledge. I love you, and I'm glad you're here. Welcome to fabulous Las Vegas!

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