I’m so pleased to share a phone interview I had with Mary D’Apiece, a fellow peer adviser at VisionAWARE, who read my book and had interesting observations, which led to some unique questions she posed to me.
Though this interview originally appeared over two years ago, individuals with visual impairment still respond to it and can easily relate to the struggles I went through to reach the point of acceptance I’ve come to live with today.
Sharing our stories will strengthen our resolve and remind us we are not alone.
Below is transcript of the Interview. You can also link to the Interview Here.
Interview with Amy L. Bovaird, peer advisor and author of the newly-published Mobility Matters: Stepping Out in Faith In Conversation with Mary D’Apice, Peer Advisor
“Mobility matters. It allows me to join the rest of society, to follow my interests and passion and mobility reconnects me with my love for traveling. I don’t have to stay at home fearing the dark anymore. I can live independently.” Amy L. Bovaird
Diagnosis of Retinitis Pigmentosa
When Amy Bovaird was 28, she was diagnosed with retinitis pigmentosa (RP), a degenerative eye condition that initially causes night blindness and leads to restricted visual fields resulting in tunnel vision or total blindness.
Diagnosis of Usher Syndrome
But Amy was undaunted. With buoyancy and optimism, she embarked on a decades-long adventure overseas during which she lived in six countries and traveled to 33 others. In her late 40s, Amy returned home to Pennsylvania to start a new chapter teaching stateside. It was then that she discovered that she had Usher Syndrome, a condition in which people with RP gradually lose hearing.
Her overseas travels had ended, but Amy soon realized that she was at a crossroads. Would she continue to ignore her vision and hearing loss or follow a new path from denial to acceptance? With heart and good humor, Mobility Matters: Stepping Out in Faith, chronicles Amy’s life-changing experiences as anOrientation and Mobility student and her personal journey to maintain her freedom and independence.
Mary: In your book you describe incidences overseas that seemed to indicate your vision was worsening. You talk about how you risked getting lost in the streets of Cairo when your night blindness became more noticeable. You bumped into little old ladies in Japan and ran into clotheslines. Some accidents left you bruised and some even required stitches. Did you come home because of your injuries?
Amy: No. I moved back because my father had cancer and my family needed me. I’m sure my vision was worsening all along, and I was becoming aware that it was harder to hear my students. But I wasn’t paying attention because I was in denial. For the first two years I was home, I tried to hide it but people noticed. At my high school reunion they thought I was drunk. Vision and hearing loss can be so gradual that you keep adjusting but then you can’t adjust anymore.
Comparison of Vision Rehabilitation Training to Cross-Cultural Training
Mary: You’ve taught English as a foreign language internationally and also taught Spanish and Asian studies in the US. You know what it means to be in a new culture. In Mobility Matters you write, “Blindness is like entering a foreign country where all the familiar cues are gone.” Would you say it’s fair to compare vision rehabilitation training with cross-cultural training?
Amy: Yes. When you are in a foreign country there are many things that you are not aware of and so much you don’t know. It’s all trial and error. You are out of your comfort zone. You think things are interesting so you step in to learn more and then you pull back because it feels strange. Then you move forward again. It’s this constant movement-adjusting
Why Do People Try to Hide Their Vision Loss?
Mary: It’s very common for people who are visually impaired but retain some sight to hide their loss of vision. Why do you think people are compelled to keep secrets?
Amy: First of all, there’s the denial. It’s very difficult to admit the extent of the problem to ourselves, let alone, others. Another reason is that having a vision problem draws unwanted attention so it’s much easier to downplay it. It’s also embarrassing to share, and risky to open ourselves up to the opinion and, perhaps, the unwanted questions of others. Sometimes people feel sharing it means they have to “explain” their condition, which is confusing anyway. There are so many hurdles. The way blind people see themselves and how society perceives blindness needs to change.
Using Teachable Moments with the Public
Mary: In the book your friend, Julio, calls you out for hiding your new white cane. He tells you in his usual frank way to take the cane out so that your visual impairment can be open to discussion. Reminding you that you are a teacher, Julio advices you to go teach others about your visual impairment and how the cane helps you navigate your surroundings. How much do you think you’ve personally taken on the role as a teacher regarding educating sighted people about visual impairments?
Amy: There are teachable moments when I’m out in the world. I answer questions from friends about how I do this or that. But teachable moments are also learning moments. I’m also learning about what people don’t know so there is an exchange of information. For example, through my blog, I learned that not everyone knows that when I’m at a street corner holding my cane up and down it means that I’m not going to cross the street. Many drivers don’t actually know that. Maybe we need a new addendum in the driver’s manual!
Meeting Your First Blind Person
Mary: The first blind person you ever met was, Bob, your Orientation and Mobility Instructor. You were worried about making an insensitive comment or giving inadequate directions to the bathroom when he first came to your door. Why was that first initial meeting so awkward?
Amy: Well, I first thought I’d been tricked. I mean, I felt like he might have mentioned that he was blind before he arrived. But he was demonstrating that you want people to see that this is one of your characteristics but not the most important one. Another thing I learned from Bob is that blindness is a continuum. Because I have some vision, I sometimes feel like a “fake” blind person. I’ve had one person wave their hands in front of my face to check if I was really blind. We all need to be educated.
First Day of Learning Mobility
Mary: Bob took you out in the community under sleep shades because he wanted you to learn to function in your environment completely non-visually. He taught you how to use the sun to orient yourself, cross intersections with the sound of parallel traffic, use the cane to detect different landmarks such as railroad tracks and even use your sense of smell to identify a type of business. But he also modeled behavior. l enjoyed the description of how a woman on a motorcycle yelled at you for touching her bike with your cane!
Amy: That was an amazing and scary day with thousands of motorcyclists gathered for “Roar on the Shore.” Bob modeled a calm reaction to the woman then. But other times he didn’t make me feel like I had to be perfectly polite and nice all the time. Bob once told me that people are mostly accommodating and sometimes too much so! When a guy tried to open the door for him, it unexpectedly hit him in the face and Bob responded, “Thanks a lot, Buddy!” However, during one of our mobility lessons, I did ask why is up to me to put others at ease with my visual impairment. “Why don’t people put me at ease?” He was clear that the responsibility fell on me. Now it makes sense, but then….! I know that if I’m stressed out, others will pick up on that. I’m not as self-conscious as I used to be, and humor works to put everyone more at ease. Now I can joke about pouring milk instead of maple syrup on my pancakes.
Accepting and Reaching out for Help
Mary: Your ophthalmologist once declared that you were legally blind at 20/200 but had a 20/20 attitude. At the beginning of your story, however, you are battered and bruised from accidents; yet, you are steeped in denial. You spent weeks hiding from your mobility instructor. As a self-described Christian Author, you write about how your conversations with God and passages from the Bible inspire you to move forward with vision rehabilitation training. Tell us about the experience that made you finally decide to pick up the phone and schedule an appointment with your Orientation and Mobility Instructor.
Amy: I had realized that there were so many visitors from the Bureau of Blind Services who were teaching me living skills, helping me access technology and offering cane training. That opened me to the possibility of change. But something else led directly to that decision. I was listening to a Christian song and the lyrics were “God use me.” I felt He was talking to me through the song. It was if He were saying, “I’m sending you all these people to help you and you are thwarting me at every turn.” I wasn’t letting myself become what God wanted to me to be. I decided I had to surrender to His will. I wasn’t letting myself be an instrument of truth. I had to trust that God was providing for me.That’s what led to the change.
The Cane Became a Comfort to Me
Mary: Once you got the cane, you admitted to “forgetting” it frequently. In the book you joke about how the red mark on the white cane reminds you of a siren, wailing and commanding people to scramble out of your way. You don’t like the way it draws attention to you and you fear pity.
Amy: Yes, but eventually, the cane was a comfort to me. Psalm 23 Verse 4 says “Thy rod and they staff comfort me.” Every time I picked up the cane I felt that God was with me. It is frightening to cross a busy street and I think I felt more courageous. So the title of my book, Stepping out in Faith has both a literal and spiritual meaning.
Advice About Using the Cane
Mary: Any advice to people who are ambivalent about using the white cane?
Amy: Yes. I say go ahead and do it. Surround yourself with people who are encouraging as you attempt to try something new. So many people think that if they pick up a cane they are going to lose independence. But when I started using my cane, I gained independence. You can use it in small doses until you feel more secure. Gradually, I felt that that the cane became part of me and boosted my confidence.
Balance About Accepting Help and Maintaining Independence
Mary: There is a scene in your book where you describe feeling uncomfortable being led around by colleagues at a school reception. As you are being pointed in the direction of the cake, you laugh that you feel like a wind-up toy. You are terribly self-conscious about receiving help. Then later that night you leave the school and walk home alone in the dark with your cane for the first time. It takes all your courage and faith, but it’s a major victory for you when you arrive home safely. Can you talk about the balance between accepting help and maintaining independence?
Amy: There is a bit of push and pull when it comes to accepting help. I don’t like it when I’m in a group and people think they have to do something for me. They are not patronizing, but it makes me feel conspicuous. I like it when I’m by myself and I can experiment. I’m still learning the importance of speaking up and being able to say what I need and don’t need. I still bump into things and I have one friend who constantly steers me in the right direction. I’m not quite at the point yet of telling her that she needs to stop and let my cane find those things. Even if I bump into the mat first, my cane will prevent a bigger collision. (I often feel like a bumper car!). One thing that has been very helpful is that my family respects my wishes and doesn’t treat me much differently. My brother drops me off at the supermarket, tells me where he will park, and expects me to find my way back to the car. There is no babying. And that has enabled me to move forward.
Plans for New Book
Mary: Any plans for another book?
Yes. I’m writing about the lighter side of facing vision loss in a book called “A Sight for Sore Eyes.” It’s a collection of the predicaments and funny situations I’ve experienced as a visually impaired person. People have said to me they think losing vision or hearing is terrible. But the truth is, vision impairment is like any other challenge and we all have them to face. It could be much worse. My goal is to teach as well as entertain.
Mary: Do you think you will travel overseas again?
Amy: I’ve taken a few trips to other states since coming back to the United States, but my Mom is elderly so I’m staying close to home. After all, I’m the cook! And we all need to eat! Even though it’s an adventure for us, with my challenges and distractions with the computer, at least I’m committed to cooking. Some days, like the day my macaroni and cheese turned into brown noodles, it’s a bit comedic. Still even that is something they’ve come to rely on! But, yes, there are still so many places I’d like to go, including Vietnam and the Philippines. In the future I will probably go on a short-term mission trip to teach English in the Philippines. I don’t think either my hearing or vision problems will hold me back. I’ll just work it out. Maybe someday I will write a book for other visually impaired people with tips on how best to travel internationally, after I find this out, of course!
To Learn More About the Book and to Purchase, Click Here or the Book Cover Below.