Neva Fairchild will be presenting at NDVS/SB Family Weekend April 22 – 23 in Fargo. Neva is the National Aging and Vision Loss Specialist at the American Foundation for the Blind and has lived with a visual impairment her entire life. As a child, she dealt with worsening vision, bullies, little support from teachers, and, fortunately, parents with high expectations. “I did all the things my siblings were expected to do. My parents didn’t know much about dealing with my vision loss, but they knew they wanted me to be able to do everything that every other kid on the block was doing,” Neva says. It’s those possibilities that she hopes to encourage when she speaks to families in Fargo in April. “Families need to find solutions to problems they encounter and encourage others to support them and their child all along the way toward adulthood. It’s coming… gotta get ready,” she says. Read on to learn more about Neva, the possibilities she made for herself, and how a future of no limits is possible for your child.
Tell us about yourself.
My name is Neva Fairchild. I live in Flower Mound, Texas, with my husband, my semi-retired seeing-eye dog, and a mutt we adopted a few months ago. I have worked for over 30 years in the field of vision rehabilitation. Since I began working for the American Foundation for the Blind in 2008, I have overseen an independent living model home, a website promoting employment called CareerConnect, and now, the Blind Leaders Development Program. I have been married for 45 years and we have two adult children, both of whom are married. I have four adorable grandchildren, but I may be biased. I have been visually impaired all my life, but I had a lot more vision when I was a child than I do now.
My vision loss is caused by Cone Rod Degeneration, a form of Retinitis Pigmentosa. It is an inherited retinal disease that my daughter also has. I could see very large print when I was in elementary school if I held the book very close to my face. By 4th grade, print had gotten too small for me to see, and I began reading Talking Books for pleasure and not reading my textbooks. By 7th grade I could not read type-written tests visually, so someone had to read aloud to me. Now, I have no usable vision and over the years have developed lots of non-visual techniques to do all the things I need and want to do. I knit, I sculpt, I make greeting cards and scrap book pages. I babysit my 2-, 3-, and 10-year-old grandchildren, I cook and clean up (when I have to) and although I have reached retirement age, I still work full-time.
What is AFB? Why do you choose to work there?
AFB was created 100 years ago by influential people like Helen Keller. They realized that programs for people who were blind were popping up all over the U.S. but there wasn’t a great deal of collaboration. If you think about the times, 1921, communication was limited to telephone, telegraph, and snail mail. There was a need for a place to collect and share information about what worked and what didn’t in terms of training for jobs, independent living, and research into the needs of people who were blind or had low vision. AFB was created to fill that role, and we are still doing that today. I am proud to work for AFB and contribute to the body of knowledge that will help to create a future of no limits.
Why are family events, like the Family Weekend event you will be speaking at in April, important? What can families learn from each other?
It’s important for families to build a network that will support each other. Many families feel like they are the only people on earth raising a child with vision loss, and they need to know they are not alone and that someone else can understand the things they are dealing with. Families also need to be aware of what is possible for their child. If you never knew that talking computers existed, how would you even start to look for ways your child can use a computer if they could not see the screen or the curser? Families also need to be challenged to do all they can to give their child a strong start toward independence.
Tell us about your experience growing up as a child with a visual impairment.
My parents fought to keep me in public schools throughout my twelve years of education. We were in the military, so I moved schools quite often. I was an adult when my mother told me that each time we moved to a new district, the administration wanted me to go to the school for the blind in that state. My parents refused. This was before IDEA, and the classroom teacher had no support to teach a child with very low vision. My academics suffered, but, oh, what opportunities I had to do things that at that time probably weren’t happening at schools for the blind. Most notably, I took art classes, and I was in the band in high school. I had taken two years of piano lessons in 6th & 7th grade and loved it. I learned to read music with a handheld magnifier held very close to my eye, one measure at a time. When I was in 10th grade, my best friend talked me into changing my whole class schedule so I could join band and work my way up to being in the same band with her. By the second semester we were both in the top band, and the next year, I was marching on a football field. I could see the person in front of me and beside me and that is all it took to stay in a straight line. Of all the things I did in school, this was my favorite.
I was most frustrated with other students who were unkind when I was in public schools. They didn’t understand why my face was so close to the book or my paper when I was reading or writing. They didn’t understand why I didn’t respond to the wave or the wink or the non-verbal communications happening all around me. They knew I was different and like the weakest member of the herd, they picked on me. I didn’t have the words to explain why I was different. If I could change one thing, that would be it: Having an age-appropriate way of explaining my vision and enough understanding to put a positive spin on it as I would now when applying for a job. The ability to make others comfortable with my differences so I could fit in and not be ostracized, so I could have felt good about me, just as I was. I have that now as an adult, but to have had that as a child would have been a game changer. That means parents must talk with their child frankly and honestly. Interestingly enough, this completely changed when I went to college. People didn’t treat me differently when they learned I had a visual impairment. I was pleasantly surprised that having low vision wasn’t nearly as odd to my classmates as it was previously, and I started feeling better about myself. Positive self-esteem is so important and so difficult to develop. Figuring out that you are OK isn’t just hard for children with vision loss, it’s hard for everyone.
The theme of our Family Weekend event is “There’s Nothing We Can’t Do in 2022.” What advice would you give to parents of children who have a visual impairment who are sometimes frustrated by things they are not sure their child can do?
Live the theme! Let your child try! Break down the activity and learn the skills sequentially so they can do what they need to do in order to be independent young adults someday. As hard as it is to let our children fail, that is how we all learn. Try and try again. Be their cheerleader and help them to learn to problem solve. Don’t wait, let them learn skills they need now so they don’t have to learn all that independence stuff all at once. It’s so hard to learn everything we all need to learn before we spread our wings and leave the nest. Make sure they start early. Help them do what their sighted peers are doing, even if they have to do it a little differently. If their classmates who are sighted are climbing the monkey bars, let your child learn how to do it too. If your son’s friends are playing football, encourage him to figure out how he can play too. Does the center really need to be able to see? I don’t think so. I played quarterback with the neighborhood kids and my cousin was the receiver. He yelled at me when it was time to throw the ball and I got pretty good at hitting him square in the chest. Being a contributor is the most important concept I think every child needs to learn. If others are cleaning up, you need to help. If others are working together on a project, you need to be in the thick of the action. If others are doing anything, your child needs to be able to figure out a way to get involved.
For more information on Family Weekend and to register for the event, go to Family Weekend 2022 | North Dakota Vision Services (ndvisionservices.com)