Editor’s note: At age 11, Emmet Teran was featured in the documentary film, Going Blind: Coming Out of the Dark About Vision Loss, by Joe Lovett (released in 2010 when Emmet was 13). In this blog Emmet shares how this experience changed his life. Watch Emmet and several others in the post-screening panel discussion of Going Blind HERE.
Both my dad and I have ocular albinism, a genetic condition I’ve had since birth. The type of ocular albinism I inherited is found in about 1 out of 60,000 men. When I was 11 years old, at around the time that Joe Lovett first approached my dad and I about the documentary movie Going Blind, I was a pretty typical preteen: overly anxious and not the most willing to be vulnerable about my vision and its limitations.
With no melanin in my skin, coke-bottle glasses to accommodate low vision, and at one of the most awkward times in life; I initially found the concept of having a film crew follow me around school to be a pretty bad idea as far as maintaining a social life goes.
Like I said before, I was a pretty typical preteen at an age where all you want to do is blend in. Don’t ask questions. Just try to act normal. Afraid that if you stand out, you’ll look weak. In reflecting now 13 years later, my desire to “be normal” and “not stand out” is something a lot of people at that age experience. In my case, however, trying to be like everyone else had a negative impact on my grades. In an effort to blend in I sat where I couldn’t read the board, took tests in small fonts, and buried my squinting eyes into books I couldn’t see. It really took me until around my sophomore year of high school to get over these habits and for me to turn my grades around.
Life Under a Microscope
Looking back at the experience, I realize that having your life under a microscope can make you rethink a lot about yourself. For a couple weeks, during the filming of Going Blind, I lived my life in front of a camera that tracked my day-to-day from class to the comedy club (as an aside, I no longer perform there). Whether consciously or not, the experience forced me to begin to think about where else I was “performing” a version of myself for the sake of trying to “not stand” out or “get in anybody’s way.”
It was right around this time that I was having a waking up of sorts. I was becoming more aware of the gaps in my vision and I began to ask a lot of questions that had been causing me a lot of anxiety before. Getting to know Joe and the cast of Going Blind was arguably one the most important interventions in my early life. It helped me overcome some of my mental blocks around as someone with low-vision and helped me become the person I am today.
Learning to Ask for What I Need
I realize that the vast majority of you reading this probably won’t find yourselves in a surreal situation where a camera crew documents your day, but what I hope you take away from this piece is that you are your own best advocate.
As a person with low-vision I’m someone who occupies a grey area of sightedness. For many tasks like crossing streets or walking downstairs, I have enough vision to be fine. But for others, like reading signs on the street, I need accommodations and support. I’ve learned that I have to be vocal and proactive in asking for accommodations and advocate for myself because my vision needs are often invisible to others. Many aspects of our society aren’t set up for grey areas.
Without a doubt, our behemoth of a health care system and all its institutionalized inequities could fill a series of blog posts here. But I’ve learned that there are some easy solutions like low vision clinics and services that are increasingly common, and if you haven’t asked your doctor about it, you should. While some tools are more expensive than others, there’s no reason to suffer in silence when the simplest of advice can have the greatest impact. Also, places like state vocational rehabilitation services can help pay for devices if you’re a student and you register for transition services. That’s definitely something to bring up with your vision teacher (teacher of children with visual impairments, or TVI).
I was fortunate to grow up near the Lighthouse Guild in New York City where around the time of filming Going Blind. I went to meet an inspiring doctor, Mike Fischer, who sadly recently passed away. Dr. Fischer introduced me to magnifying glass domes and low-cost paper-sized magnifying sheets, but he also introduced me to self-advocacy. I learned that I had every right to ask for extra time on tests, and for my handouts to be printed with larger fonts. I also was encouraged to make an effort to grab a seat in the front row. Learning that I am deserving of accommodations was a profound revelation.
What About Now?
Nearly a decade later, in the fall of 2017, during my senior year of college, a circular dark shadow slowly unfurled itself across the top of my left eye. I was left seeing “fuzz,” like the snowy channel on a late-night TV.
After two days of this, I went to my campus health center. That visit started my mom and me on a 6-hour, wild goose chase of doctors and ended with a visit to the emergency room. The fuzz I’d noticed turned out to be fluid flowing through a tear in my retina toward my central vision. My retina had detached and my surgeon went on to say that had I waited another day or so, I would have completely lost the vision in my left eye.
After a vitrectomy surgery and weeks of uncertain recovery, I regained much of the vision I’d lost. Ready to return to school, I worked with the resource center at my college, as well as my academic advisors and professors to develop a path forward. Even though I missed several weeks of classes, having the support of professors willing to let me delay turning in assignments and a resource center that introduced me to audiobooks and other tools to support my vision allowed me to graduate on time.
I know that not all schools have the means to provide such hands-on support. However, what I gained from Going Blind and what this visual recovery reaffirmed is that you’ll never know what help is out there if you don’t ask. I’ve brought this lesson with me from my days of doing cringeworthy stand-up as an 11-year-old, to being a capable and independent adult in the working world. So far, it has served me well.
Emmet is now 24 years old and living in Brooklyn, New York. He graduated from Wesleyan University in 2018. After working in Connecticut politics for a few years, Emmet returned to NYC where he joined back up with Joe Lovett as an Administrative Assistant with the non-profit A Closer Look Inc. Emmet will be going back to school in fall 2021 at Hunter College where he plans to pursue a Masters degree in Urban Policy.