My Road to Independence

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Editor's note: Amy Bovaird is a new peer advisor.

Amy sitting on steps and smiling into the camera

In 1988, I was diagnosed with Retinitis Pigmentosa (RP), a progressive genetic disease that typically results in blindness. I chose to continue a new career in Teaching English as a Second Language abroad. To my surprise, nothing much changed with my vision. I noticed gradual differences but I could retain my independence over two and a half decades of teaching English in different countries.

In 2006, I returned home from the Middle East, where I was living at the time, to help my family since my father passed away. I stayed and decided to leave teaching and write books about my travel experiences. But by 2009, I realized my plans were not panning out and I was broke. Lucky for me, two teaching jobs simultaneously became available. In one job, I taught high school Spanish and in a second, I taught Asian Studies at the college level.

Facing Hearing and Vision Loss

As I prepared, I finally faced two major problems I had been avoiding: a huge chunk of both hearing and vision loss. I saw an ophthalmologist in my home town and he confirmed my RP condition and recommended me to the Bureau of Blindness and Visual Services (the BBVS) in Erie, Pennsylvania, the closest city to me.

Rebecca, the caseworker assigned to me, empathized and supported me. She set up hearing and vision exams with the goal of keeping me employed. From the exams I learned I had Usher’s Type III hearing loss, which can accompany RP.

Vocational Rehabilitation Services

The Bureau purchased hearing aids and a closed circuit television (now known as a desktop video magnifier), which magnified print, including the text books I taught from.

The Bureau of Blindness also assembled a team that assisted me with technology. It was through this liaison that I received a laptop to carry to class, which contained Zoomtext, a special software program to enlarge the font and change background colors on the computer screen. I could now deliver lectures.

I also worked with a Life Skills facilitator, who secured strong lighting and some household devices such as a cutting board with sides, a large print-alarm clock with a physical sensor, which made it adaptable to those with hearing loss, a large-print date book, a thermostat with an enlarged digital dial to make my life easier, to name a few things. In addition, she introduced braille to me – a positive step to a language learner.

Importance of Orientation and Mobility

However, by far, the orientation and mobility specialist was the one who influenced me the most in my attempt to regain my independence. He was one hundred percent blind. In the beginning, I was not open to learning the skills he had to offer. I didn’t see myself as “blind” even though l had been legally blind for twenty-five years. He explained blindness was a continuum from legally blind to totally blind. Not only did I not know this, but I’ve learned many sighted people are not aware of the continuum either.

It's The Same World

Under his tutorship, I learned more about my vision, blindness and how it needn’t impede me from living my life. We met once a month, and while our initial attempts didn’t win me over, by the third lesson he taught me the most important lesson of my life: it’s the same world, for people who are blind or sighted. We simply approach mobility differently, using sight for those times and situations in which we can see, and non-visual approaches for those times we can’t.

His lessons and mindset changed my outlook. My biggest obstacle to independence was cane training. Over a course of six months, this became my biggest bridge to independence—literally fending for myself on the road served as my “road to independence.”

An optimist by nature, I have channeled my optimism into creating awareness of Retinitis Pigmentosa and enabling others to see and reach their potential.

Writing Again

In 2011, my vision and hearing did stop me from doing my teaching job effectively. But I didn’t allow that to deter me. I decided to return my energy to my writing again and wrote about my journey to independence, so it’s a topic close to my heart. Mobility Matters is the title of my book (read about it on my blog) and, obviously, a topic I’m passionate about. Orientation and mobility training absolutely changed my life and outlook. Now I am an advocate for cane training and dog guides. I am positive and empathetic toward others who, like me, resisted cane training. A mobility cane comes with a stigma and is often looked at as an object that restricts our independence but I found it actually creates it.

I write magazine articles about facing vision loss for a number of publications and am in the process of becoming an inspirational speaker to vision-impaired groups and churches. My faith enables me to trust that God has created this plan for me at this time in my life and also helps me to face the daily challenges of living with progressive vision loss.

But I don’t work in a vacuum. The Erie Sight Center has a vision support group that meets bi-weekly and plans excursions and problem-solves. It is excellent. The sight center also works with the BBVS, serving as a contact point between people in the community and the BBVS. They provide low vision counseling, screening, and, in short, whatever they can to make the vision-impaired within the community become independent. It’s a wonderful facility!

"No Man Is An Island"

John Donne wrote “No man is an island, entire of itself.” That’s so true. The more people are are visually impaired exchange ideas and work together, the less isolated we will feel. I believe the more we educate ourselves and sighted individuals, the more we demystify blindness and see similarities. To aid with this, I have created three “tip sheet” resources. The sheets focus on how loved ones can help family members who are visually impaired achieve increased independence, what friends of people with visual impairment can do to assist, and what people who are visually impaired can do to help themselves have a better life and become more independent.Check out my low vision tip sheet.

Blindness Doesn't Have to Separate or Isolate

Blindness doesn’t have to separate or isolate; it is only one aspect of our lives. It doesn’t need to become the defining aspect. We can retain our independence by developing a positive self image, knowing where to seek help and resources,and equipping ourselves with proper tools, which include being able to adapt, a sense of humor and a large dose of optimism.


Topics:
Personal Reflections
Independence

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