American Action Fund for Blind Children and Adults
Future Reflections Convention Issue 2015 NOPBC CONFERENCE
by Anil Lewis
Introduction by Carlton Anne Cook Walker: Anil Lewis hails from Atlanta, Georgia. He earned a master's degree in public administration with an emphasis on policy analysis and program evaluation from Georgia State University. Anil has worked as a Braille and assistive technology instructor and as a job development and placement specialist. He used the NFB's positive philosophy to educate, motivate, and encourage blind people to achieve successful gainful employment. He developed and managed a job placement program for people with disabilities at one of the largest employment staffing companies in the world. He also worked for a law firm as the Georgia Client Assistance Program counselor advocate. Anil has served on the board of directors of the National Federation of the Blind and has received awards from his alma mater, GSU. Presently he serves as executive director of the NFB Jernigan Institute. We are honored to welcome him today. [Applause]
Thank you for that wonderful introduction! I used to be very active with an organization called the Foundation Fighting Blindness, or the RP Foundation. I have retinitis pigmentosa, or RP, which is supposed to be a slow, progressive deterioration of the retinas. My older brother and sister both have it, and they gradually lost their vision over many years. I was twenty-five years old, I had a Mustang convertible, I had a job at the bank, and I was working on my bachelor's degree in computer information systems. I thought I had it licked; RP wasn't going to get me.
One Friday I went to work, and on Saturday I went to a movie called Look Who's Talking. That movie was so awful my vision went that weekend. When I went in to work on Monday, I couldn't even read my computer screen.
I used to use that story to play on people's emotions. "Oh, you poor guy! We should donate!" I worked at United Way on the speakers' circuit, and I was out there telling my story, making people feel sorry for me. I was highly requested that year.
Then I met the Federation. The Federation told me that what I was doing was really institutionalizing misconceptions that prohibited me from reaching my full potential. I was being used by a system that wanted me as a revenue generating source and did not have my best interest at heart. The NFB changed my whole spiel, and believe it or not, I was the most requested speaker that next year. I had a more upbeat message, and I helped them raise more money than I had before, because people were looking for positive outcomes.
Not long ago I went to a conference, and I attended a support group meeting for people with low vision. People were saying things like, "I went on a vacation to Paris. They took me to a dark restaurant, and I said, 'Why did you take me to this dark place? You know I don't like dark places!'" One lady said, "I don't want to use my cane. I don't want to be treated any differently." Then a guy said to her, "Let me correct something. You're being treated differently because you don't use a cane." He talked about how when he didn't use a cane he'd bump into stuff and trip over stuff, and people would think he was either drunk or on drugs. Then he said, "But now I use a cane." I thought, Wow, this is redeeming! This is going to be good! But then he said, "And now I get all kinds of help wherever I go!" [Laughter]
I heard all that and I said to myself, You were there. That was you. I went through that phase where you turn blindness--something people would feel pity about--into something you capitalized on. What helped me cross over the threshold? What helped me finally see that blindness is not the characteristic that defines me or my future? What got me to the point where I said that I can live the life I want? The Federation got me there, and I think this is very relevant for parents.
I came through that particular transition and that paradigm shift through my life experience. Long before there was a master's degree in orientation and mobility, there were blind people learning to travel using a cane. They learned to use echolocation and learned to listen for the direction of traffic. Through my life experience with my Federation family I learned what I could do. I recreated my definition of who I am.
My mom didn't have any of that. She didn't have the Federation. My brother and sister began losing their sight much earlier than I did. My mom went through stuff all alone. When my brother and I were little kids, they diagnosed us as educationally mentally retarded. I know that isn't the correct term today. I know we use the term developmentally disabled. But that's not what they called me out on the playground. They would call me retarded! It helped me build strength of character, but I wouldn't wish it on any kid! My mom told the school, "They're not retarded. But if they are, you have to find ways to teach them." The school provided a lot of services for us, and the next year we went from mentally retarded to the gifted program. Labels mean nothing to me now.
When my brother started losing his sight, my mother went and talked to the school. The folks at the school said, "Hey, we were wrong! This boy was never educationally retarded. He just can't see." He had experienced a reduction in vision that was so significant he couldn't read. There was nothing wrong with his intellect.
Well, the professionals told my mom that they couldn't provide services for my brother at that school. Had she known the Federation, she would have known that wasn't true. But she didn't know any different, so they sent my brother to the Georgia Academy for the Blind. Now, the NFB has no preference between mainstreaming and residential schools. What's important is for kids to get quality education wherever parents choose to have them attend school. My brother went to the residential school, and he was excellent in sports. They didn't teach him Braille because he had just enough vision to read print, using a magnifying glass and those big bottle-bottom glasses and a big bright light. I told him, "I'm surprised the book doesn't burst into flames!" [Laughter] Even then he was only able to read character by character. As far as the cane, no. The school subscribed to the hierarchy of sight. The students who had a lot of vision led the students who were totally blind around the campus. My mom didn't know. My brother didn't know.
My mom was filled with guilt. For some reason she thought it was her fault, first that my brother had the developmental disability diagnosis, and then that he became blind. It was nobody's fault! Stuff happens. That's life. We have to recognize that stuff happens, and we have a decision to make. Will we waller in the stuff, or can we push on through?
My mom pushed on through, without a lot of assistance. But because she did not have the Federation, because we were not around blind individuals who were living successfully, my brother became very passive. He ended up working at Georgia Industries for the Blind, earning subminimum wages, and he turned into a functioning alcoholic. He is not living the life he wants. He is living a life that's the consequence of some bad decisions. He is living a life that's a consequence of the lack of proper intervention. He's living a life that doesn't know that blindness is not the characteristic that defines a person.
My brother's name is Raphael. Even in his current existence he is awesome. He is hilarious, and he'd give you his last dime if you need it. But he is not where he should be. He should be here. We have to make sure that more Raphaels get here.
How do we do that? We're doing it right now. You guys have nothing to feel guilty about. If you're going to choose to waller in stuff, say "Aye!" [Silence] Good, because if anybody said aye, I was gonna take them out! [Laughter] We can't play with people trying to keep us backward. You want to move forward, you want to make some dynamic stuff happen! You want your kids to live the lives they want! You want them to go get a proper education and live independently, stand up in front of people and say, "Stuff happens!" Let me tell you how to do it. Here's the checklist:
Now, I'm going to close with a reality check. Yes, there's stuff that your child can't do. There are things I know I can't do, but I can't let society make that decision for me. I cannot do a full round-off cartwheel into a backward somersault lift. Can't do it! I used to be able to do stuff like that, but my center of gravity has changed. So we want to set high expectations, but we also need to be realistic about what a child's limitations may be.
After I knew the Federation, that twenty-five-year-old boy who went to see Look Who's Talking was back. He was believing in himself in a real way that he had not before. We want your kids to believe in themselves. We start by getting you to believe in them, and I think that you guys in the National Organization of Parents of Blind Children are already doing an excellent job. My hat's off to you for all of your effort and sacrifice.
I want to leave you with this. Never let anyone say that you're busy making your child look blind by teaching him Braille and cane travel. Those are the nonvisual access skills he's going to need. Don't let anyone tell you that your kids are not loved as much as anybody else's kids. I can unequivocally say that I love you and your children because you're here, helping us build the organization and changing the lives of future generations. If there's anything I can do to help you, please be in touch. Thank you, my NFB family!