Finding the Light When You're Losing Your Vision

Light has played an important role in my life, both in a physical sense as well as a more symbolic one. In the physical sense, there is my inability, due to a visual impairment, to perceive light in a way that allows me to see like most people. I have a condition called retinitis pigmentosa that results in progressive vision loss, starting from the periphery and moving to the center of the visual field, and there is a good possibility that someday in the future I will lose my remaining eyesight. Today, I have less than 10 degrees of central vision remaining, which means that I am classified as legally blind.

It was only after I was diagnosed with my visual disability that I became interested in photography, which is all about playing with light. I approached photography not only as a personal challenge, but as a way to challenge the world and the way it sees me as a person with a visual disability. As a personal challenge, photography has encouraged me not to withdraw from the world, but to engage with it. Photography has encouraged me to get out of my comfort zone and travel, because as they say, “in order to take more interesting photos, you have to visit more interesting places.” I use photography to challenge assumptions about ability and disability. One of my favorite things to do is to pull up to a spot with my white cane and take out my favorite camera to take a photo (these days that camera is likely to be my iPhone). The idea is to use two things that are not often associated with each other (a blind person’s white cane and a camera) to challenge assumptions about what it means to be blind and what blind people can do. In this sense, photography is a tool I use to educate others.

In a more symbolic way, light refers to the role education and educators have played in my life. I have been fortunate to have a number of mentors in my life. One of those was Julio, the social worker who was assigned to me when I struggled in school after arriving in the U.S. as a non-English speaker. In the middle of a somewhat chaotic transition to a new country, a new culture and a new language, Julio became my lifeline. As a strong Dominican-American male figure, Julio became my role model for what I could achieve if I applied myself and pursued an education. My second mentor was Profe Rick. Although Profe was the Spanish teacher at my high school, and I didn’t take Spanish, he became a trusted friend without whose support I would not have made it through boarding school.

Just a few years after I arrived in the U.S., I received a scholarship that allowed me to attend a Quaker boarding school for ninth grade. This was a turning point in my life. The motto of my boarding school was “Turn to the light,” a saying that captures the Quaker idea that each of us has an inner light that represents that of God within us. While I am not a religious person, this idea of inner light left a lasting impression. It has guided my work throughout my life, including what I do today as an inclusive learning consultant. My goal in this role is to find that inner light in each person, that spark that represents each person’s potential and ability to contribute. Just as Julio and Profe Rick found that spark in me and lit my inner light, I try to look for ways in which technology can empower learners who face similar challenges as the ones I faced in school to find their own inner light and unleash their potential. What keeps me going in this work is what I call the “magical moment:” that moment when you see the spark in a person’s eye that lets you know you’ve changed their life for the better in an instant.

I had such a “magical moment” a decade ago when I first encountered inclusive technology. I had just been diagnosed with my visual impairment and was struggling to find my way through a master’s degree in instructional technology at the University of South Florida. At around that time, Apple had released OS X Tiger with the VoiceOver screen reader and the advanced “Alex” voice. What made this a “magical moment” for me was the message I got from the technology. It was a message of hope that everything was going to be OK because there were really smart people working on technology that would allow me to accomplish my goals even if I lost my remaining vision. In this way, “Alex” spoke to more than just my ears and my brain — it spoke to my heart and my soul. It was the spark I needed to persevere in my studies and go on to complete my master’s degree and later my doctorate.

When we think of light, we often just think of it only in the physical sense, that light which allows us to perceive the colors and beauty in the world around us. But light can be much more. It can be our inspiration, our spark that keeps us going and allows us to overcome the challenges we face in our lives. For me, light has not only been the physical light I have been losing with every passing year, but the symbolic light I have gained through the people and technology that have come into my life to allow me to have a meaningful and fulfilling life.

My challenge to you is this: How will you be that light for somebody else? More importantly, how will you help them “turn to the light” and find their own spark?

Follow this journey on Luis Perez Online.

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