Braille Monitor                                     February 2017

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The Quest for Normal Independence

by Chris Nusbaum

Chris NusbaumFrom the Editor: This was the keynote presentation made at the 2016 meeting of the National Organization of Parents of Blind Children (NOPBC) meeting held at the 2016 convention of the National Federation of the Blind. Chris Nusbaum is no stranger to those who regularly read these pages, but Melissa Riccobono’s introduction serves well to refresh our memories.

Introduction by Melissa Riccobono: I met Chris Nusbaum years ago at an NFB of Maryland convention. He was a little boy, full of questions about everything. I remember he was very curious about my guide dog.

Chris's parents had been involved with the NFB from the time he was a baby. But it was when Chris attended an NFB program called the LAW program, Leadership and Advocacy in Washington, that he actually began to learn about NFB history and do some advocacy on our issues. That was when the NFB became Chris's NFB. It wasn't just for his parents anymore. He transitioned to become a full member of the organization. He realized what the NFB could do for him, and he understood that it could be more powerful if he became part of that building process.

Chris now is a high school graduate. He is on the board of the National Association of Blind Students, and he is president of the Maryland Association of Blind Students. In the fall he is not going to go straight to college. First he is going to get some quality training at the Louisiana Center for the Blind. I would like to introduce to you Chris Nusbaum:

Thank you, Melissa, and thank you to the leadership of the NOPBC. It's a great honor to speak with you today. I've been asked to talk with you about my educational journey and transition into adulthood. Those of you who know me well will know that I am hopelessly devoted to our NFB history. Forgive me for giving in to temptation and referencing my favorite speech from one of our former presidents, Dr. Kenneth Jernigan.

In his 1993 speech "The Nature of Independence," Dr. Jernigan proposed that there are three stages through which a blind person must travel in order to become truly independent: fear and insecurity, rebelious independence, and finally, normal independence. Not everybody reaches the third stage. Each stage is inevitable for a blind person's evolution from helplessness and despair to confidence and hope.

What, you may ask, does this have to do with education and transitioning into adulthood? I can answer by pointing out the number of times we hear the word independence when we talk about parenting and educating blind children. Independent travel. Independence in daily living. Improving independence in the classroom. IEP goals talk about independently completing this or that task at school. The word is pervasive in the blindness field, even at this very convention!

Since independence is the primary topic of concern related to transitioning into adulthood, I think it is imperative that we begin with a workable definition of the term. Dr. Jernigan's three stages are the best definition I can find.

So at the risk of stealing an idea from a much better speaker than I am, I'd like to expand on Dr. Jernigan's theme as I talk about my own educational journey. I want to touch on how I have gone through each of these three phases in my life so far.

I am totally blind and have been since birth. Naturally, my journey in the world of blindness education began at a very early age. I had what all the other blind kids had at that time: infant and toddler services, a special ed-affiliated preschool program, a TVI and cane travel teacher, and all the rest. I also was blessed with some benefits which, unfortunately, many blind children do not have. I had supportive and determined parents, a TVI who also served as an advocate for higher expectations, and a one-on-one aide who used her position to encourage my freedom rather than to stifle it. Most importantly, through my family and my teacher, I had an early connection with the National Federation of the Blind.

I didn't think about blindness much in those early years. When I did, I knew one thing for certain: I knew that it is okay to be blind! I didn't know it then, but I know now that even in kindergarten my parents were teaching me the philosophy they had learned from the Federation.

Then school began. I have always been mainstreamed, and I am thankful for that every day. But I remember learning in school that I was somehow different. All the other kids talked about what they could see, and for some reason I had no idea what they were talking about. But that was okay, I thought. I had already learned from my parents that blindness wasn't going to stop me from achieving my dreams.

In the summer after first grade, when I was six years old, I went to my first blindness-related camp. It was a now-defunct program that sought to teach the basics of independence to blind elementary students. This was my first time living away from home. Though I was excited about the experience, I was afraid to do most of the things they asked me to do. I won't go into the details, but suffice it to say that I ended that week more afraid and insecure than I was when I began. Not only did I feel unsure of my capabilities as a blind person; I also felt that I was a failure, that I couldn't live up to the standards of independence that were expected of me.

Looking back, I think the people who ran that program had their hearts in the right place. However, they may not have had much experience teaching young children. They didn't know how to meet me where I was and gently guide me toward independence. When I heard their claims of adherence to NFB philosophy, my six-year-old mind was made up. I wanted nothing to do with that organization, and I had no intention of doing anything with its people ever again!

I continued with this mindset through elementary school and into middle school. I was content with who I was and where I was in terms of blindness skills. I didn't expect that I would make much more progress. My teachers seemed to think of me as a pretty bright kid. I was into acting and music and other extracurricular activities, and I had a tightly knit circle of friends. As far as I was concerned, I was doing pretty well.

Adults and students alike started to call me amazing and inspiring. I bought every word, basking in the glory of being that courageous blind kid. Still, lurking beneath that contented façade was that same underlying fear and insecurity—fear of failure, fear of frustration, fear of the future. These fears kept me complacent, and they resigned me to the status quo. After all, if I could be amazing without even trying, why waste the effort of raising the bar?

As adolescence approached, I began to yearn again for a community of blind people who would understand the unique problems I faced. Yet, in all my stubbornness, I was determined that that community would not be found in the National Federation of the Blind.

All that changed in the spring of seventh grade. For four short days I participated in my first Jernigan Institute youth program, the LAW Program. It changed my life! There I met mentors who showed me for the first time how I, too, can live the life I want. They gave me a reason to raise my expectations of myself. Most importantly, I met the Federation for what it truly is—a family that loves each other, encourages each other, and works together toward a common goal. I knew then that my passion is for the work of our community. That passion has fueled much of my energy for the past five years. I will confess, however, that I returned from my NFB LAW Program experience with a little bit of rebellious independence.

Armed with the new skills I had learned, along with the brashness of a teenager, I wanted to prove to the world that I could do absolutely everything on my own! I think during this period I could be likened to a toddler who, faced with a challenging task, proclaims, "I do it myself!" [Laughter]

Fortunately, this attitude changed as I went through high school. I learned even more skills at the Louisiana Center for the Blind in the Buddy and STEP programs. I learned that the can-do attitude with which I had been instilled in the LAW program is just as applicable to me as it is to anybody else.

Most importantly, my parents and my Federation friends taught me to make my own decisions. This may seem strangely simple, but it is crucial. For the first time I learned that I could choose for myself what my independence would look like. I learned that it is okay to have my own informed opinions, even if those opinions differ from those of my parents or my teachers.

By learning this essential skill, I have been able to serve as my own advocate, making it clear to my sighted teachers and peers what I can do and what I truly need. In short, I am now able to say with confidence, "I can do this, and here's how I'd like to do it." To me, then, this ability to make choices is the best indicator that I have reached the stage of normal independence.

So as I stumble my way into adulthood, I reflect that I'm about as ready as I'll ever be. There are certainly many perks to childhood, and no longer having them will take some getting use to. However, because of the skills I have learned, the confidence I have gained during my educational journey, both in and out of the classroom, I know I can meet the challenges of adulthood with confidence, determination, and optimism.

There is still a great deal of work to be done, but I'll get through it, even if it takes nine months in Louisiana. There is still much to learn, and I'm eager to learn it. Above all, I know for certain that I can live the life I want and that I have a nationwide family that will be with me every step of the way.

In closing, what advice can I offer you as parents to help your blind child make a smooth transition into adulthood? When you get right down to it, it's really quite simple. First, come to know for yourself that it's okay to be blind, and show your child that positive attitude by word and by example from a young age. Second, start teaching the skills of blindness at home from the beginning. Nurture at home the skills that are taught at school throughout the childhood years. Third, teach your child to make his or her own decisions. Allow your child to succeed or fail on his or her own merit. This will help your child develop the decision-making skills that are essential for full, normal independence. Finally, and most importantly, get connected and get your child connected with the loving, supportive, edifying family that is the National Federation of the Blind.

As many of you already know, the Federation and our philosophy have the power to change lives. Let your kids experience that change for themselves. When we commit ourselves to these core principles, I believe you and I, working together through the collective action of this great movement, can and will ensure that the next generation of blind people can live the lives they want.

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