Living the Life She Wants
by Amy Buresh
From the Editor: Amy is the president of the National Federation of the Blind of Nebraska, an employee of the agency serving blind people in her state, and the mother of two children. She also serves as a member of the national board of directors and at this summer’s convention delivered one of the best speeches I’ve ever heard about integrating all of these responsibilities and still finding time for oneself. Here is what she said to the convention:
The house is still. For a few precious moments my world is quiet. My two-year-old daughter Sarah is sleeping peacefully on my lap, and my husband Shane and ten-year-old son Noah have long since given in to the sandman’s call. You would think that I, too, would be able to take advantage of the tranquility and get some much needed rest. It is a busy summer at my house. Noah is playing baseball, which means practice or a game on most evenings. Sarah is an active, inquisitive, imaginative, energetic toddler. Family is visiting from California. Youth programs like WAGES (Work and Gain Experience in the Summer) and several others are in full swing at the Nebraska Commission for the Blind and Visually Impaired, where I am employed as a vocational rehabilitation counselor. The Nebraska affiliate has just completed its annual Walk for Independence, and week one of our BELL Academy is in the books. I have a convention speech to write. What could I possibly say that would make a difference, challenge and inspire? My mind is working overtime. Words from the book I had just read Sarah before she drifted off to dreamland still running through my head. “… someday you’ll know…” In The Dream Tree by Steven Cosgrove, Patti is a little fuzzy, energetic caterpillar who is curious to know what it will feel like when she becomes a beautiful butterfly as she spins her cocoon on the branches of the Dream Tree. She asks her mom. She asks a fluttering butterfly. But it's all to no avail. No one can truly explain the mystery that awaits. Dream Tree is a story for all ages that addresses those things in life that are so hard to explain. Though it is sometimes hard to wait, growing up will come soon enough.
I found myself contemplating what my children’s grown-up future would hold. Their little personalities already showing, what would they become? What would the future hold for our students from the BELL Academy or the WAGES program?
It wasn’t so long ago I had the very same thoughts about my own life.
I am blind because of retinopathy of prematurity. I weighed nearly two pounds at birth and have been told I could easily fit in the palm of my dad’s hand. Placed in an incubator, I received too much oxygen, damaging the optic nerves of my eyes and causing blindness.
When I was five, my family moved from our farm to Nebraska City so that I could attend the Nebraska School for the Visually Handicapped (NSVH, as it was known then). My parents made the difficult decision to relocate to a new community far away from family, friends, and all they knew so that I could continue to live at home during my school years rather than in a dormitory. There I received a solid education and had a normal family life, complete with two pesky little brothers, family campouts, picnics, dress-up, and backyard sports. I believe this was critical to my success during my formative years, and I have always been grateful my parents made the choice they did.
While a student at NSVH, I received training in many blindness skills, the most critical of which was Braille, which no doubt helped me to excel academically.
In eighth grade I began taking classes at the public school in Nebraska City. That was an adjustment academically and socially. I went from all material, including textbooks, in Braille to having to learn to use books on cassette. I love music, so I tried out for swing choir. It took some hard work, but I made it. And, I can admit it now—my mischievous side got the best of me, and I purposely would sometimes dance near the edge of the stage, just ‘cuz I could. Most times though I danced right in step with everyone else because I knew instinctively that what I did would reflect on all blind students to follow me. Although I was active in extracurricular activities—president of our school chapter of the Fellowship of Christian Athletes, musicals and plays, National Honor Society, and speech team, I found it hard to make real friends and sat through many lonely lunches. This is when those tough life questions began to formulate. What would it be like to be a blind woman? I knew one. She was the wife of the superintendent of NSVH and the Braillist. She was a nice enough lady and in the church choir with me. She and her husband had three children. I assume she prepared their meals and kept the house. However, she could not walk the one block between her home and the school’s campus on her own. She went sighted guide every day and walked without a cane around the school with a slow and shuffling gait. I knew I did not want this. My own mobility lessons were once a week. I was expected to use and trust my cane then, but at no other times was I encouraged to use it. My mobility teacher thought it was more for recognition than a tool. “Grab a wing. It’s all right,” he’d say. I did take it with me to the public school, where I used it properly. How would I get around? I knew this was not what I wanted for my future.
I kept the questions and fear at bay by keeping busy. Through the Nebraska Human Resources Department at the University of Nebraska at Lincoln, I participated in a Big Sister-style program in which I was paired with a blind elementary school student whom I continued to mentor well after the program’s conclusion.
Growing up, I had few positive blind role models and limited contact with confident competent blind peers. It was during my teenage years that I first participated in youth programs sponsored by the Nebraska Commission for the Blind and Visually Impaired (NCBVI), where I gained many valuable skills and met my future husband. (So, those of you in summer youth programs, look out! You may get more than you are bargaining for this summer.)
For several summers I worked as a volunteer counselor at the Summer Kids Independence Program (SKIP) Camp, a program for children ages five to twelve, sponsored by NCBVI. I wanted to share with other blind youth the things I had learned during my high school journey: which plans had worked for me, and which hadn’t. I believed then and believe more absolutely today that mentoring is important in improving one’s attitude toward blindness and a great way to learn how to handle being different in our society.
Whether at home or at school, participating in music, academics, or athletics, I was successfully working and competing with my sighted peers. But, despite academic and extracurricular success, no one would hire me for a summer or after school job. A teacher did offer me a babysitting job a few times, but that was the extent of my work experience.
As a senior in high school those nagging life questions from a few years ago came back in earnest. Neither my family and teachers nor my sighted peers had an answer. Could I really be successful as an independent blind adult? Would I ever marry and have a family? What about employment? Could I get a job and do it well?
Following graduation, I began conquering those fears and seeking answers to these nagging questions by attending the Nebraska Center for the Blind in Lincoln. There I was first introduced to the underpinning philosophy of the National Federation of the Blind and, equally important, to kind and inspirational Federationists like Barbara Loos.
Armed with newfound confidence and skills, I enrolled in Peru State College, graduating with a BS in psychology, sociology, and criminal justice.
In 1993 the NFB of Nebraska established a scholarship program, and I was its first winner. With this award I faced a turning point in the evolution of my personal philosophy and in my affiliation with the National Federation of the Blind. Growing up, I had been warned that the NFB was an organization of radical, evil militants I should avoid like the plague. Thanks to the scholarship program, I attended my first state convention in the fall of 1993, discovered the warmth of the members of the NFB and the important work we are doing, and haven't looked back since. YES! I could live the life I wanted. It was there I met Chris Boone. She was confident, smart, a law student, and a wife and mom. These were things I wanted for myself. If she could do it, so could I!
The very next year, in October of 1994, a handful of other concerned blind Nebraska students along with myself were granted the charter for the Nebraska Association of Blind Students within the Nebraska affiliate. I was elected president of the student division, an office I held for two years.
Since those early days in the Federation, I have held a number of chapter and affiliate positions in Nebraska. In 2003 I was elected to serve as affiliate president, and in the summer of 2006 was elected by the national convention to the board of directors of the National Federation of the Blind.
The year 2006 was quite a monumental and emotional year in my life. Two months before being elected to the national board, on Tuesday, May 2 at 10:26 PM, a seven-pound-ten-ounce, twenty-one-inch long baby boy we named Noah made his grand entrance into the world. Shane and I were proud and excited. Naturally, we had the normal questions first-time parents would have. But thanks to the National Federation of the Blind and the supportive family we found there, we never doubted our abilities as blind parents—even though some around us did. Soon after Noah’s birth, (we didn’t even have his name picked out yet and still very emotional with all the birth hormones) we were visited by a hospital social worker. He came in, notepad and pen in hand, with a mile-long list of questions. Were we prepared at home? How would we feed, change, and bathe our new baby? How would we know if he was awake or hungry? (Duh!) Did we have anyone to move in with us permanently? Now, I don’t know about you, but no matter how much you love your parents or your in-laws, you don’t want them living with you. We had heard of these things happening to other blind parents, but that was years in the past—this shouldn’t, couldn’t be happening to us today! I wanted to cry. Shane, as he usually is, was strong, pragmatic, and calm. We asked if all new parents received a visit with questions such as these, and he had to reluctantly admit they did not. Only if it was thought a situation warranted special extra attention or posed a certain risk or potential for problems did they receive a visit. So, we took a deep breath and began to educate this guy about the real truth of blindness. Standing on the shoulders of those successful, competent blind parents who went before us like Marc and Patricia Maurer, Ray and Diane McGeorge, Joanne Wilson, Steve and Nadine Jacobsen and so many more, we began to answer his questions and, with love, hope, and determination, to explain how we would care for our son. Finally, after what felt like an eternity, he was satisfied we were not going to harm our son and left us alone!
Later that same year, in November, I was assigned my first duty as a national rep. I was to travel to Ohio, and I could bring my family with me. I was excited to share the good work we were doing at a national level and to learn from their affiliate and watch the always poised, confident, smart, and well-dressed Barbara Pierce in action up close. Our trip there was un-eventful, and the convention was positive and uplifting. Barbara was kind and gracious, and we had a wonderful time with our Federation family in Ohio. Confident and energized from the weekend, we boarded the plane to return home. As we walked down the jet bridge and entered the plane, a worried flight attendant greeted us. He physically steered us immediately to our seats and tried multiple times to take the baby carrier, with Noah in it right out of Shane’s hands. After all, Shane might drop him. How could he possibly get the buckle secured around the carrier properly? His tone was condescending, and we were treated like toddlers. Did he stop to think about how we got ourselves, our bags, and our baby on to this plane all by ourselves? We settled Noah’s seat nearest the window and farthest away from grabbing stranger hands. Shortly after takeoff Noah was hungry. I took him out of his seat, grabbed my cover and prepared to nurse him. Right on cue came our friendly flight attendant with worry and warning that “You better cover up” and “Are you ok to do this? Did I know what I was doing?” How did he think we kept our son alive until this moment? I remained polite on the outside and knew I needed to try and educate this guy, but on the inside I was emotional and angry. While I was still feeding Noah, our overly solicitous flight attendant came to take drink orders. When the drinks were served, he brought ours in cups with lids and straws and insisted on opening our package of pretzels for us. We could not get off that plane fast enough! Once on the ground, we gathered our things, put Noah in his carrier, and waited our turn to deplane. We thought we could escape without another encounter but … it was not meant to be. Mr. flight attendant once again tried to convince us to sit and wait until everyone else was off the plane and he could find help for us. We said “No thank you,” and hurried as fast as we could off that plane.
I know that we are not alone in these types of experiences and that others have had to deal with far harsher circumstances.
In July of 2010 at the national convention in Dallas, we were all shocked, appalled, and frightened to hear the news of how baby Mikaela was taken away from her blind parents for fifty-seven long days simply because her parents were blind. I often think of how blessed we were to have narrowly escaped a similar fate.
On Valentine’s Day 2014, at 9:30 AM Sarah Faith arrived. This time we would not be surprised. We were prepared. Armed with literature from the NFB, and phone numbers of other blind parents and the national office on speed dial, we waited for a visit from a well-intentioned social worker, but it never came.
Are there challenges and frustrations with being a blind parent? Sure: Like when the room parent captain questions my ability to put together simple treat bags for the Halloween party; like when exiting a restaurant or crossing a street or at a checkout counter someone says what a big helper our sighted children must be (to which Noah responds “I guess”); or when one of the moms of Noah’s friends that I have served with on several committees and school and church groups say that Noah wasn’t asked to fill in when they were one altar boy short because they thought he had to sit with us to help us out lest we go astray in the communion line; or putting the KNFB reader through the paces and working with the teacher and school to read stacks of homework sheets in print; or when, after Sarah was born, a woman with whom I had served on the home and school board for two years asks if we had a nanny/housekeeper live with us to help take care of things since it must be extra difficult to manage a home and family without sight. (I know I’d sure like a maid but don’t run in the kind of circles where one can afford one.) Sure there are lots of annoyances and challenges, but I wouldn’t trade it for the world.
Incidents such as these cause me to be invigorated to work shoulder-to-shoulder and stride-for-stride with like-minded Federationists who hold my same beliefs. I believe our biggest disability as blind people is the limitations and doubts which are placed upon us by others in society. Let’s continue to march together with our hammers of determination poised to drive home the nail of success.
In my acceptance remarks when joining the National Federation of the Blind Board of Directors during the NFB’s 2006 national convention in Dallas, I said that the Federation, for me, is a family. I feel at home and empowered here, sheltered by the big branches of the mighty oak tree, a nut that stood its ground.
The roots of that tree go deep into the recesses of time and history. As written about in C. Michael Mellor's book Louis Braille: A Touch of Genius, we learn of a request for him to tutor a blind prince in the Austrian royal family. Louis Braille declined. As it says in the book, "According to his family, he asserted 'I am not the servant of only one blind person. I am the servant of all blind people.'"
Had he said this against a backdrop of arrogance, we wouldn't be likely to see it as a good thing. However, we know that he did serve blind people every day, including both friends and students every step of the way when creating his code. We also know that this decision probably shortened his life, since the air would have been much purer in Austria than at the school in France, where he chose to stay. In other words, he ultimately compromised his health and sacrificed his life to improve the lives of fellow blind people. He understood, as we do in the Federation, that individual accomplishments matter little if they don’t benefit others.
As many of you know, the National Federation of the Blind has a new Blind Parent Initiative. This initiative includes a website, <http://www.blindparents.org>. On this website, we want to include videos of blind parents explaining (and possibly demonstrating) how they complete different parenting tasks such as changing diapers, transporting babies in strollers or carriers, keeping track of toddlers when traveling, dispensing proper amounts of medication, helping older children with homework, feeding infants, and helping young children learn letters, numbers, colors, and so much more. If you are a blind parent, I hope you will take some time to offer a video, photo, and narrative to this project.
Sarah sighs softly in her sleep. As I gently rock her, I am contented and at peace. My ordinary life, juggling family, Federation and work commitments, struggling to keep all the balls in the air—this is the life I’ve chosen—the life I’ve created. My life as a blind woman is ordinary, not extraordinary. Therein lies its beauty.
Finally, “She fell into a long sleep, and dreamed the dreams of the dream tree.”
I am forever grateful for the many gifts given to me in my life. I am blessed with a wonderful spouse. Shane is kind, funny, smart, and a leader of this movement in his own right. I could not do the things I do without his love and support. Together, we are living the lives we want.
The National Federation of the Blind too has been a treasure. Melody Beattie said, "Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend.
“Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow."
M. Jenison said “It’s your place in the world. It’s your life. Go on and do all you can with it and make it the life you want to live.” The National Federation of the Blind is a powerful and life-changing gift. It was for me, and I hope for you too.
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