Editor’s Note: Guest blogger, Amy Bovaird is a good friend and fellow peer advisor at VisionAware. We have been online friends for many years and lovers of the written word. Here is her story about living with low vision.
Everyday Misconceptions of Low Vision
Several years ago, my boyfriend’s housemate told him, “Amy can’t be blind, she makes eye contact with me.” In another situation, I was reading an excerpt from one of my books to members of a Rotary Club. Afterward one of the group members raised his hand and said, “You’re not really blind. How could you read that book?” Sometimes children come up to me and ask about why I use a white cane. When I explain, they often say, “But you don’t look blind!” One summer a Lions Club group sought out help to serve their famous BBQ at their fairground stand. I volunteered. Being a lion from another club, the leader took me on, albeit reluctantly. She put me at the end of an assembly line adding bread and butter to the plate.
Each of these situations perpetuate an inaccuracy or mistaken belief about blindness. I am legally blind but not completely blind. I am one of many who still has some useable vision, albeit not always stable or reliable. In fact, 15% of the people in the city where I live, Erie, Pennsylvania, struggles with some degree of sight loss. That is about 200,000 people. Many individuals never pick up a white cane. They simply manage the best they can, often keeping their loss to themselves. The amount of sight loss varies from person to person. It’s not liked a light switch, with one setting—on or off. Blind or sighted. There is a large continuum in between. That’s where meeting those with low vision often becomes cloudy. I want to clear up some of the confusion with you today.
February is Low Vision Awareness Month
February is both Low Vision Awareness Month and Retinitis Pigmentosa (RP) Awareness Month, making it the perfect time for me to share my story. I have Retinitis Pigmentosa, a rare, hereditary eye condition characterized by progressive sight loss. One in 4,000 people live with it. I first started to notice it in my late teens. My visual field narrowed and I had trouble in low light (at night or in darker environments). This progressed to tunnel vision, restricting vision more and more. It took me more than a decade before being diagnosed with RP. I was told I would “go blind.” In 1988, even specialists did not distinguish between low and / or no vision. Some of the challenges are similar and some are quite different. Both are manageable with the right mindset.
Addressing Misconceptions of Low Vision
Let’s revisit those situations I started off with in this blog post. I could still make eye contact with my boyfriend’s housemate because I still had my central vision, which was quite strong at that time. I had lost—or was in the process of losing—my peripheral or side vision. Others with low vision may also be able to appear as if they can make eye contact, even if they have lost some of their central vision, the reason being—our brain can “remember” and connect with people to make it look like one is making eye contact even if he or she cannot actually see the person’s eyes. So yes, legally blind people can make eye contact.
Now, sometimes when I tell the story of the gentleman from the rotary club who believed I was not really blind because I could still read print, I smile. The belief about blindness, or any ingrained stereotype, pervades. Earlier in my talk that day, I had explained to the group about how those with low vision had different degrees of sight loss, which met the “legally blind” criteria. After his comment, I showed him the Large Print book I read from. It was a size 18 font and said any smaller print would be indistinguishable. Sometimes it requires patience and reminders to others. People don’t see their perceptions as limiting or that they need to reframe them.
Since even children believe those who are blind look a certain way, this shows how deep the stereotype exists in our culture. The truth is there is no specific way a blind person “looks.” To teach this aspect to school children, I created a video called “The White Cane Song,” a collaborative effort by Melissa and Larry Beahm, a professional duo of singers, and me. It educates about the use of a white cane and also about the spectrum of sight. One of the lyrics reads “I have some degree of blindness. But I use my cane to help me through.” The video shows two young girls and me walking down the sidewalk with our white canes. Some friendly townspeople let us pass. The song has a catchy tune and demonstrates how children with sight loss can pursue hobbies. The children learn yoga in the video. It’s important to educate children to create an environment of empathy and inclusiveness in the school place.
The final example is harder to combat. It’s sometimes difficult to change the low expectation society places on those with low vision. I could easily manage the task given to me at the barbecue yet the leader came to me frequently to ask if I needed help. My role was to give them assistance. I learned from that experience to clearly communicate my abilities. This misunderstanding took place with a member of an organization tasked with “Being a beacon of light for the blind” by Helen Keller. It becomes imperative to share our truths, especially in an organization who provides support to the blind. We need to bridge understanding and build teams of outreach to teach others who know even less about sight loss. Like every other person, those with sight loss have skills, talents and natural abilities. We are more than able to contribute to society. I call myself “The low vision motivator with high expectations.” We have much to contribute to society and need to overcome that limitation in all social circles.
Living with Low Vision
So, what does life with low vision look like for me? I lead an active life. I am a teacher by trade, and a storyteller by nature. So, when my sight loss made managing a classroom too problematic, I decided to turn my hobby into a second career. It combines writing, educating and telling stories within two arenas – faith and sight loss. When I finally got past some of the fears being blind threw at me, I started writing about my slice-of-life situations. And I always found important life lessons. So, I share these in my memoirs and at my speaking engagements.
I now have come to terms with my five degrees of limited sight. With RP, this will decrease as my condition continues to deteriorate. However, I am optimistic about the quality of my life and I want to pass on that optimism with others.
The Six Factors of APPLY-G
6 factors have helped me maintain a positive outlook despite my unstable and unreliable vision. I call it hide-and-seek vision because it seems to be playing this game with me. Daily I remind myself to Apply-G because these factors are really ingredients in my personal sunscreen. They are: Attitude, Power, Patience, Laughter, Say Yes to Change, and Gratitude. When I add this sunscreen to my life, it prevents me from getting burned!
1. Attitude is an area of constant rephrasing for me. Being viewed as “accident-prone” because I couldn’t see something hurts my psyche. I once dropped a stack of text books on the floor thinking it was the edge of my teaching table. Live that one down! But I have learned to show kindness and empathy to myself and look at my situation in a more positive frame of mind—whether that means downplaying it, joking, explaining or establishing a life lesson.
2. Power comes with choice. Since I can’t control what my eyes show me, or what I can or can’t see in a given moment, I have to choose how to respond. Making that decision reminds me, ultimately, I am still in control. That feels good!
3. Patience has taught me to s-l-o-w down. Typically, I move fast. But since I can’t see well, it’s an accident waiting to happen. I am getting better at slowing my pace down. Also, patience teaches me I can still pursue my passions. For example, I am discovering I can do many of the same things I used to do, such as running and teaching if I am patient enough to adapt my style. Recently, Zoom has given me new opportunities to teach English. I have trouble moving around safely in a physical classroom—which was my style—but online, I can keep my active personality and still teach my students the tenets of English. It’s not quite the same, but I am back “in the driver’s seat!”
4. Laughter is healing, so I write and speak about mishaps. It helps me to enjoy my life, and makes me more approachable to others.
5. Say Yes to Change enables me to get out of the doldrums. I give myself permission to stop what I’m doing and choose another activity. I take a nap, call a friend, go for a run or write in my journal and I begin to feel better.
6. Gratitude is the secret substance to giving me my outlook.I keep a journal where I thank God for what he has done, or will do in my life, if I don’t see it happening now. I find gratitude reminds me to live in hope and joy. Gratitude is The. Key. Ingredient. It makes all the other elements flow smoothly. I love the picture this paints in my mind. I have only to recall the worst sunburn of my life when I sunbathed on a cloudy morning on the equator without any sunscreen. I didn’t think I needed it with the clouds covering the sun. The painful red as a lobster memory along with the visual to APPLY-G reminds me of the importance to Add sunscreen liberally.
Chat with and Learn More About Amy
It’s been wonderful to share my thoughts with you today. I would love to hear your comments and any questions you might have about Low Vision Awareness Month or my eye condition, Retinitis Pigmentosa.
Amy Bovaird is a freelance writer, ghostwriter, the author of the Mobility Series and the Finding Joy After … Series. She is the recipient of the “Distinguished Merit of Literature” by Ohio Valley University for her first memoir, Mobility Matters. A former ESL instructor, world traveler and inspirational speaker. She peppers her talks with faith, humor and culture. Amy is legally blind and losing her hearing. But she advocates living your best life, one rich in gratitude. Amy now lives in northwest Pennsylvania in the same house where she grew up. She strives for the upper hand with her three lively cats, and on most days, fails miserably. Learn more about Amy at her website.