Future Reflections                                                   Special Issue: Low Vision and Blindness 2005

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Growing Up with Low Vision: An Interview with Dr. Z.

Betsy Zaborowski, Psy.D.

Dr. Betsy Zaborowski is the Executive Director of the National Federation of the Blind Jernigan Institute. Her life is full of activity and accomplishments. She also has a deep personal commitment to expanding the opportunities for all blind individuals of all ages. In an interview for Future Reflections magazine, Dr. Z. (as she is commonly known) talked about growing up as a low vision child, about visual and nonvisual techniques, about parenting low vision children, and about some of the education goals of the NFB Jernigan Institute. Here is what she said:

Q: What is your eye condition and has your vision changed over the years?

Dr. Z: The cause of my blindness is bi-lateral retinal blastoma (cancerous tumors in the retinas of the eyes). I was born with this condition and I had one eye removed when I was a baby. The other eye was treated with radiation until I was five years old.

When I was younger my vision was 20/100 with glasses and I could read regular print. In my thirties I had some problems with my eye and I lost some additional vision. This made it impossible to read print for any length of time, so I started using auditory methods and I began to learn Braille: I was in the middle of my graduate studies at the University of Denver. This is when I found the National Federation of the Blind and began to deal with myself as a blind person.

Q: Were you placed in the regular education classroom?

Dr. Z: Yes, I was in a regular classroom. I tried to use large print books when I was very young. I remember the books being very big and very heavy. It turned out that I didn�t really need them; I could read the regular print at a satisfactory level for many years, but I read it very slowly and did not read as much as I could have had I learned Braille at that time. I also needed to hold the print very close to my eyes and I experienced fatigue because of this. As I got older, the headaches came as the reading demands increased. I functioned as a low vision student for the first twenty-five years of my life: holding print very close, using a lot of magnification in my corrective lenses, and, occasionally, using one kind of magnifier or another. (This was before closed circuit televisions--CCTVs--were available, but if they had been around at that time, I probably would have used them.) I started using recorded materials when I entered college in my twenties, but I also continued to struggle with print.

Q: Did you feel different as a child?

Dr. Z: Yes, I did feel different as a child. For me it had more to do with wearing heavy �coke bottle� glasses. I held on to the crazy notion that if I wore the glasses all the time people would not see me as that different. You know, when your vision is that impaired there is no way of really hiding it; it�s there. I lived in a very small town and everybody knew that I had visual limitations.

I was told that I was legally blind and that was the term that I always used to tell people about my vision. Now as I think back on it, I think that probably was a better way to define my eyesight. I do not think that I would have been comfortable with the term visually impaired. As a child, I did not think of myself as impaired because I would try and do anything. My parents also encouraged me to be independent. I did everything the other kids did with the exception of driving.

Q: Today, what do you consider yourself? Are you blind, visually impaired, legally blind, partially sighted, hard of seeing?

Dr. Z: When most people hear the word blind they tend to think of totally blind people and all the misconceptions and stereotypes that go along with that. Because of these negative stereotypes, people with some residual vision may not think of themselves as blind and may resist learning the nonvisual techniques. But being blind does not mean being less than--it simply means doing things differently. Those with low vision must know that many of us in the Federation have some vision, but we also see ourselves as blind people.

There seems to be this thinking that one has to fit into the sighted or blind world, but in reality there is only one world and we all live in it.

Today, I consider myself a blind person. I came to that understanding in different dimensions through my relationship with the National Federation of the Blind (NFB). I have always been a blind person. Even when I was younger and I could see more than I can see at present, I was a blind person. I consider myself a blind person more today because I use alternative techniques: Braille, the long white cane, screen-reading software, and electronic speech notetaking devices. I seldom wear my glasses; they hang around my neck mostly. I do use a CCTV, but only to fill out a short form or identify mail. I do not use it to read anything of length because it is very taxing on the eyes. More and more, I use my vision less and less.

Q: As a low vision child, were you at all excited and hopeful about your future?

Dr. Z: I think I was excited about my future. I did believe that I could do a lot of things. I was pretty successful in school. When I first went to college I was really frightened. I remember thinking: �Can I really do this? Can I make it on my own? Can I compete in a post secondary environment?� It was scary, but I was successful in undergraduate work and obtained my masters right after. And then I was a school guidance counselor for a number of years.

My work was interesting but as my vision began to deteriorate, so did my work. I had difficulty in reading handwritten notes from teachers. Counselors have to deal with so much reading and writing and, at that time, I did not know anything about nonvisual techniques outside the ones I naturally adopted. The reason: I knew no blind people. It would have been very beneficial to have known blind teachers, counselors, and administrators who could have given me tips on how to do my work nonvisually instead of having to depend on my vision.

I ended up quitting my job and moving from Michigan to Colorado to get my doctorate in clinical psychology. That�s where I found the NFB. Since then, I have had my own counseling practice, taught at a university, and now I am developing and administrating research and training programs for the NFB.

Q: What advice do you have for parents who have concerns about what kinds of jobs or careers their children might be able to do as adults?

Dr. Z: I think it is important for parents to be exposed to successful blind people so that they know firsthand that blind people are doing all kinds of jobs today. That�s why parents should attend our annual NFB convention and the seminars that we offer. It is then that they can come to realize that their children can have a bright future.

We are very fortunate in this country that there are wonderful opportunities for the blind--if the blind person is prepared. That is a big IF. My experience in getting jobs meant that I had to be a little better than the next guy in order to convince the employer to hire a blind person. I had to work a little harder, dress a little better, and talk a little faster. Today, the opportunities are better, but it is still a challenge. You have to have confidence in yourself or no one else will. We (blind people) must be able to sell ourselves. But the younger generation must also realize that they cannot do it alone. They must seek out other blind people that they can talk to and get advice and support from.

Q: Let�s talk a little about the Jernigan Institute. What are the goals for the Institute?

Dr. Z: The Jernigan Institute is a center of innovation. This is the first time in history that an organization of blind people has founded, and is operating, a research and training center. We are developing programs in a number of areas including technology, education, employment, and rehabilitation; programs for senior citizens, and a state of the art research library named after the founder of our organization, Jacobus tenBroek. I think what is different about this facility is that the model programs, the research, the training--all of it comes out of the experiences of blind people. We are directly responsible to our membership.

Our first initiative was a science academy. We held summer sessions in 2004 and 2005. The one for older kids, Rocket On!, is conducted in partnership with NASA. These kids learn about rocketry and then they launch a rocket. The other academy, Circle of Life, is geared to middle school kids. These students study all aspects of sciences that relate to life: marine life, plant life, human life, etc. The Academy�s mission is to stimulate the minds of blind students and let them know that science and math can also be an avenue of learning for them.

We also have an early childhood initiative, online courses for teachers and parents of blind children, and so much more.

Q: Why should future educators of blind and low vision children seek out guidance or training from the NFB Jernigan Institute?

Dr. Z: That is a very good question. In this whole low vision and blindness arena there is a tremendous emphasis on vision. Maybe it is natural for medical experts and low vision specialists to focus on augmenting vision, and the NFB is not opposed to that. Using CCTVs, magnification, or corrective lenses is acceptable if a person can use such tools efficiently. At the same time, there needs to be an emphasis on teaching those individuals nonvisual techniques, technologies, and strategies.

The nonvisual approach has to have the same value as the visual approach. That is why those studying to work with the blind, especially in education, need to come to us, because we specialize in the nonvisual approach to low vision and blindness. We want a smorgasbord of approaches and techniques for low vision people to use at home, in school, and on the job.

I remember a discussion I had with a gentleman who argued that low vision individuals should be taught to use their vision. I asked him why should you have to teach someone to use his or her vision? He went on to give the example of a low vision person walking into a dark theatre. He thought that this person needed to be taught to not go charging down the aisle, but to wait for his or her eyes to make the adjustment. I agreed that, indeed, this was one strategy. Another strategy, I suggested, would be for that low vision person to carry a white cane so that when the lighting suddenly changes, the cane could be used instead of awkward delays and uncomfortable squinting.

When I started using the white cane it was challenging because I had sufficient vision to see people�s reactions to it. They stared or moved their children out of my path of travel and that made me feel uncomfortable. But I persisted because I found that the cane made me more effective. I could look at my companions when we walked down the street together; I could walk down a flight of stairs with my head held high. There is real value in using the combination of vision and the cane. Those are the things that low vision experts should learn and then teach their clients.

Q: What advice or guidance do you have for parents who are considering, but not yet convinced about, Braille, cane travel, and other blindness skills training for a low vision child?

Dr. Z. Most parents like to enrich the lives of their children. Parents can think of blindness training in nonvisual techniques as enriching the life of their child. The concept is simple: exposing blind children to Braille, cane travel, and technology for the blind is the equivalent of exposing a child to theatre, dance, and foreign languages. It increases their awareness and gives them options.

Q: In conclusion, what other advice do you have for parents?

Parents should not shelter their blind child, but encourage independence and active play. All children need recreation and room to make mistakes; all of us have, at some point, skinned our knees. Research suggests that physically active children have better mental capacities. Karate, judo, swimming, and wrestling are all great sports for low vision kids. Parents should find a physical activity that their child can be successful at, but also encourage the child to try different things.

Parents should also encourage the low vision child to use her sense of touch. When I cleaned my mother�s house, she taught me early on that I had to check it with my hands. My mother had an incredible fashion sense. She taught me to feel the textures in fabric. She didn�t have to look at the different wools to find the better quality wool, she felt them! To this day, when I shop, I touch everything I look at. The combination of using vision and touch gives more information than using residual vision alone. And why force a low vision kid to look at everything in his environment when what he sees is not an accurate image or the process is painful?

Most importantly, parents should put their child in contact with other partially sighted, competent blind people. Children find comfort and encouragement in knowing they are not alone; that there are other people like them. This helps them realize that they can live full, normal lives. In our organization, we have a history of being able to connect parents to competent, well-trained, blind role models; men and women with many different interests and experiences.


Adoptive Families Needed for Waiting Vision-Impaired Children

The World Association for Children and Parents (WACAP) is seeking loving adoptive families for beautiful children from around the world. Currently we have 26 children with various forms of vision impairment ranging from mild to significant. WACAP has been placing children in loving adoptive homes since 1976. WACAP has adoption programs in six countries including China, Korea, India, Russia, Thailand, and the United States. Xiao Min, born in February of 1997, is outgoing, friendly and full of life. He loves music, singing, and playing the drums, all of which he does very well. He dreams of attending a music school, and though his music, �bringing happiness to everyone in this world.� Xiao Min is blind but he doesn�t let that stop him from living life to the fullest. He has a wonderful dream, now all he needs is a wonderful family to help him make his dreams come true. For more information, contact:

Debbie Sweetland
Family Finders Recruitment Specialist
WACAP, World Association for Children & Parents
(206) 575-4550, fax (206) 575-4148

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