Future Reflections                                                               Convention Report 2005

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Renewed Vision

by Lucie Kiwimagi
Boulder, Colorado, kiwimagi@aol.com

“Vision happens in the mind, not in the eyes.”
— Marc Maurer

Editor’s Note: Kiwimagi attended her first convention of the National Federation of the Blind this past July, less than one year after her introduction to the organization. In the text below, she shares how she came to know the NFB, and describes the profound impact its members, and the convention experience in particular, have had upon her and her family. This article is based upon the remarks she made at the recent state convention of the NFB of Colorado. It is noteworthy that at that same convention Lucie Kiwimagi was elected president of the Colorado Parents of Blind Children, a division of the NFB of Colorado. Here is what she says:

Mother and son smile together.
Lucie Kiwimagi and her son, Anton.

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. But even more than that, I am an artist at heart with 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. I had a special interest in the ways in which the blind are able to access the visual arts. Little did I know that I would find much more than I was looking for. Through my research, I found the National Federation of the Blind (NFB).

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, the orientation and mobility teacher, gave Anton and me a guided tour of the facility; Julie Hunter offered to teach me Braille; and Ann Cunningham 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. It was a one hundred and four degree day, and as we sat in a swelteringly hot airport, a friendly-looking person holding a long white cane caught my eye. Suspecting that he too was on his way to Louisville, I ventured over and introduced myself. With great enthusiasm, he welcomed us in advance to our first convention, and proudly explained that he had not missed one in years. When we arrived in Louisville, the congenial fellow, (who I later learned was none other than Tommy Craig, the NFB delegate from Texas), insisted upon sharing a cab with us to the Galt House hotel, and paid the bill as a way to honor our “virgin” status as NFB convention goers.

Tommy had warned us about the elevators at the hotel. With over 2,500 attendees circulating around the Galt House, one can imagine that the elevators might become congested. These crowded elevators came to be a source of entertainment and learning for Anton and me over the course of the week. Anton soon learned that following 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. 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 at the seminar for parents. She was to become my confidant at the convention with respect to Anton’s elevator demonstrations and other unconventional behaviors. At the seminar, Heather, an NFB leader 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 like her sighted siblings. Her fearless spirit came alive as she recalled rolling down a hill on a barrel and crashing into a fence at the foot of a hill. As she spoke, I became aware of my biases with respect to what I thought blind children are physically capable of doing. She opened my eyes to new possibilities. She urged me to consider how my tendency to overprotect Anton could 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; after all, the blind child needs to size-up his surroundings, too. Further, when I shared my concern over his tendency to fuss and grunt (which I 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 supported and understood than ever before. Rather than grieving the loss of the idea of a normal child—as others had encouraged me to do—I was now asking myself, “Why should I view myself as a person in the midst of grief (a process associated with death)? Am I not the parent of a beautiful, young blind person just beginning to step into a whole new world of possibilities?”

As the week proceeded, I forged ahead to learn more. In a workshop on early childhood exploration, Joe Cutter discussed concepts 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, some ideas had clearly been missing from our training; ideas that are central to the NFB philosophy.

Cutter proclaimed, “For the blind child, being blind is the most natural thing there is.” What a revelation! For Anton, using 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 the participants in his workshop to always question what we read about blindness, and cautioned that early intervention can sometimes really mean early interference. Lastly, he emphasized that the NFB is a skill-based and a confidence-based organization. As I learn more about this approach, 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 that 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, I learned, could band together to do any number of the following: plan an Easter egg hunt; 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; establish an email list (listserv) for families; increase awareness about blindness by inviting an NFB speaker to a child’s school; and educate extended family members, doctors, and (yes!) vision teachers about blindness.

In the remaining four days of our stay, Anton participated in the NFB Camp (childcare) while 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 has not started crawling or walking and his talking is 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, but are often challenging to blind children. Heather Field urged me to let Anton initiate movements—playing 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 and followed up after convention by sending me an electronic copy of these goals.

At another point, I heard Carrie Gilmer, a parent from Minnesota, refer to the white cane as one’s third eye on the ground. And Anton received his first cane at a special segment on cane travel. The common thread among all this information and new ideas, was that the blind child should be afforded just as many opportunities as the sighted child to be self-motivated and independent.

As the week 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 and our family, and as a way to repay those in the organization who had been so
generous throughout my convention stay with their time and knowledge. Most importantly, I now see 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 will live a fun and fulfilling life
complete with the opportunities, challenges, and beauty that the world presents to us all.

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