Renewed Vision

By Lucie B. Kiwimagi
Boulder, CO
Published in Future Reflections, The National Federation of the Blind Magazine for Parents and Teachers of Blind Children, Vol 24, Number 4 (2005)

I attended my first convention of the National Federation of the Blind this past July, less than one year after my first exposure to the organization. In this article, I will share about how I first came to know the NFB as well as the profound impact its members, and my convention experience in particular, have had upon my family and me.

When my husband and I learned two weeks following Anton’s birth that he was totally blind, we were overcome with shock. As the weeks and months passed, we began to realize that the only way to meet the challenges ahead would be to do our best to accept Anton’s blindness, viewing it merely as a part of who he is. Although we initially felt a lot of sadness, we began to think that we were still entitled to our original dreams for our son and for ourselves as a family.

Inwardly, however, I grappled with nagging questions. By training, I am an art therapist, an artist at heart, and someone who has a passion for things of visual beauty. In Anton’s first year, I asked myself again and again, “How could it be that a visual artist could have a child who is blind?” Friends and colleagues commented on the irony of the situation. Some people offered me expressions of sympathy. Others assured me that eventually I would find answers to my questions, that Anton’s coming into our lives would one day make sense.

In an effort to find some direction, I began researching resources available to blind people, with a special interest in the ways in which the blind are able to access the visual arts. Through my search, I found the National Federation of the Blind. Little did I know, I would find much more that I had been looking for.

When Anton and I paid our first visit to the NFB’s training center here in Colorado, the Colorado Center for the Blind, I was welcomed warmly by its director, Julie Deden, and her staff: Erik Woods, being the Orientation and Mobility teacher that he is, gave Anton and me a guided tour of the facility; Julie Hunter offered to teach me Braille; Ann Cunningham, a tactile artist, invited us to sit in on her dynamic art classes. From the start, we were made to feel right at home! With repeated visits to the Center, my outlook toward Anton and his blindness became infused with new hope. Maybe he really could achieve more than we were able to imagine.

Several months later, we were invited to travel to our first national convention of the NFB in Louisville, Kentucky.

On our way to Louisville in late June, our plane stopped over in Houston (on a one hundred and four degree day!) As we sat in a swelteringly hot airport, a friendly-looking person holding a long white cane caught my eye through the crowd. Suspecting that he too was on his way to Louisville, I ventured over and introduce myself. With great enthusiasm, he welcomed us in advance to our first convention, stating that he had not missed one himself in years. When we later arrived in Louisville, the congenial fellow, (who I later learned was none other than Tommy Craig, Texas’ state delegate), insisted upon sharing a cab with us and flipping the bill as a way to honor our “virgin” status as NFB Convention goers.

Tommy had warned us about the elevators at the hotel, which came to be a source of entertainment and learning for Anton and me over the course of the weekend. With nearly 3000 attendees circulating around the Galt House, one could imagine the elevators might become congested! Anton soon learned that following the sound of the sharp “ding” of the elevator, the doors would open and beyond them was the potential for experimentation and fun. Almost immediately, he took to screaming at full volume inside the moving vault, much to the mixed reactions of the other passengers (and sometimes there were many!). Mostly, people seemed to delight in his screeches. I, on the other hand, was mortified by his piercing yells, especially since I didn’t seem to be able to do anything to stop them.

On the second day, I met Heather Field, whom I came to confide in with respect to Anton’s elevator demonstrations and other unconventional behaviors. At the seminar for parents, Heather, a long time NFB member from Tennessee, shared the story of her upbringing. A storyteller extraordinaire, she imparted her experiences as a blind child, including her need to frolic just as her sighted siblings did. Her fearless spirit came alive as she recalled rolling down a hill on a barrel and crashing into a fence at the foot of the hill. As she spoke, I became more aware of my biases with respect to what blind children are capable of doing, especially physically. She opened my eyes to new possibilities, urging me to reconsider my tendency to overprotect Anton and in the process possibly deprive him of much of what life has to offer.

In the ensuing days, Heather took Anton and me under her wing. In response to his elevator antics, she commented matter-of-factly, “When he does that, he’s looking around with his ears.” Only a blind person could have such insight, I thought. We talked about times when such behavior was highly appropriate, considering the blind child’s need to “size up” his surroundings. Further, when I shared my concern over his tendency to fuss and grunt (which I’d secretly thought was an expression of his frustration over not being able to see), Heather cried, “He’s bored! Congratulations! You have a normal toddler on your hands!” When I explained to her the delays in his development, she combated my comments with her own observations of his natural intelligence. “Clever boy!” she would constantly say to him. With each of our conversations, I felt new enthusiasm for Anton’s continuing growth and ultimate potential.

Up until now, my husband and I had been showered with people’s expressions of sympathy. Many said they were praying for us, praying that Anton be granted sight. One relative had even suggested we take Anton to a so-called miracle healer. Now, at a convention of thousands of blind people, I was feeling more seen, supported and understood than ever before. Rather than focusing on, as I had been encouraged to do, grieving the loss of the idea of a “normal” child, I was now asking myself (as Kay Ferrell, in her convention address, urged all convention goers to ask) “Why should I view myself as a person in the midst of grief (a process associated with death). Aren’t I the parent of a beautiful, young blind person now stepping into a whole new world of possibilities?”

As the weekend proceeded, I forged ahead to learn more. In a workshop on early childhood exploration, Joe Cutter spoke sentences I had never heard with respect to blindness. Despite all of the services Anton had been lucky to have since he was eight weeks old, there were things that had clearly been missing from our training, and that I came to learn were central to the NFB philosophy. Joe proclaimed, “For the blind child, being blind is the most natural thing there is.” What a revelation! For Anton, “seeing” with his hands, his ears, his nose and his tongue was seeing. Joe also spoke about “alternative techniques of blindness,” something no visual impairment specialist we had met had ever mentioned. He urged us participants to always question what we read and learn about blindness and cautioned that early intervention can sometimes mean “early interference.” Lastly, he emphasized that the NFB is a skill-based organization and a confidence-based organization. As I learn more about this approach over time, I realize that our ongoing participation in the NFB will be a key factor in Anton’s ability to thrive.

At the “Parent Power” workshop later that day, an array of other new ideas was shared. One parent commented that our children deserve to be raised with the belief: It is OK to be blind. I had to ask myself, “Do I hold this belief myself? Am I doing all I can to instill this belief in my child?” Additionally, representatives from Parents of Blind Children affiliates made reports of the activities going on in their respective states, and shared ideas for chapters wishing to be more vital. My mind reeled with possibilities! Parents of blind children could band together to do any number of the following, I learned: plan an Easter egg hunt for blind little ones, organize a tandem bike program for families with blind kids, start a summer reading program for blind students, form a dance class for visually impaired children, form an email list or LISTSERV for families, increase awareness about blindness by inviting an NFB speaker to a child’s school, educate extended family members, doctors and (yes!) vision teachers about blindness.

In the remaining four days of our stay, with Anton participating in the Kids’ Camp, I attended segments of the general assembly of the NFB and sat in on several other workshops geared toward parents and teachers. With concerns about Anton’s motor progress and speech development still on my mind (at 20 months, he had not started crawling or walking and his talking had been minimal), I soaked in all there was to hear from specialists and parents alike. Joe Cutter suggested Anton work on transitions between movements (sitting to crawling, for example), insisting that these components of movement are central to motor development, and often challenging to blind children. Heather Field urged me to let Anton initiate movements, play and talking all on his own, lest he come to rely on me as an external source of motivation. She even sat down with me and talked through appropriate goals to set in Anton’s next IFSP meeting, later sending me an electronic copy of these goals. At another point, I heard the white cane referred to as one’s “third eye on the ground” (a quote by parent Cari Gilmer from Minnesota) and Anton received his first cane at a special segment on cane travel. The common thread amongst these pointers was that the blind child should be afforded just as many opportunities as the sighted child to be self-motivated and independent.

As the weekend came to a close, I felt as if the NFB’s philosophy was running through my blood! I resolved within myself to become involved at the local level for the good of our son, our family and as a way to repay those in the organization who had been so generous throughout the convention weekend with their time and knowledge. Most important, I am now seeing my little boy through new eyes. With the help of people in the NFB, I have reclaimed my vision for him as a human being: that he live a fun and fulfilling life complete with the opportunities, challenges and beauty that the world presents to us all.