At age 17, my vision began deteriorating rapidly. I was diagnosed with a rare form of early-onset macular degeneration. Having a permanent and progressive disease means that I continue to respond and adapt to changes in my vision. Some of these changes are fairly intuitive: as my vision declines, I use stronger magnification and rely more heavily on auditory information. Yet, many features of my vision loss involve less obvious transitions. As my vision declines, I update the language I use to describe my vision loss. I do not believe these shifts in how I describe my condition are purely semantic; instead, they coincide with my changing sense of identity.
I first noticed something was wrong when I took a practice ACT my junior year of high school. My neck ached for days after I spent hours hunched over my desk, squinting at materials. My scores were alarmingly below what was expected. I had a hard time reading, and I presumed I desperately needed a new prescription. When I went to the eye doctor, I was told that lenses couldn’t correct my vision beyond 20/70, and they had no idea why. After hours of testing and consultation with specialists, I had my answer: Stargardt disease.
When I was first diagnosed, I commonly referred to myself as having “bad eyes.” I felt it wasn’t worth it to unload onto friends and strangers exactly what my diagnosis was or how it impacted my visual experience. Frankly, I didn’t want the world knowing why I couldn’t see. Sharing this narrative felt too intimate and personal. It was so much easier to tell others that I had forgotten my contacts or wasn’t wearing my glasses.
Nonetheless, I felt different. Having navigated the world as a sighted person, I felt like something was being taken away from me unfairly and unexpectedly. I also felt it was unacceptable to share these feelings. I didn’t want anyone’s pity or concern. I wanted to be strong, independent, and resilient.
Within months of my diagnosis, I stopped driving. To my teenage brain, I was giving up my autonomy and freedom. I felt dependent. Although grateful for friends and family who drive me, I began feeling equally bitter that my schedule will forever be at least partially dictated by others. The reality hit: over time, I will rely more and more on those around me. I began to reconsider my expectations for my future.
Transitioning to college while simultaneously losing my vision was stressful. It became obvious that denying the reality of my vision loss was limiting me academically and socially. With this realization, I started using the label “visually impaired.”
I required academic accommodations, facilitated by Disability Services. I despised this process; I did not want additional attention or special consideration. Despite my best efforts to be unobtrusive, I needed a way to tell my professors what I needed and why, and the label “visual impairment” suggested that I had something that needed accommodating, but I wasn’t “broken” and didn’t like the word “disabled.”
My sophomore year, I got involved in several organizations on campus. One organization, a community service sorority, Alpha Sigma Gamma, required that we do “ducky dates” -– brief 10-15 minute conversations to get to know everyone in the organization. I felt too embarrassed during these brief initial encounters to admit my visual impairment. I didn’t want to be seen as dramatic or defective. It felt socially inappropriate to turn the conversation away from our favorite romantic comedies to instead highlight my disease. But I also found myself feeling embarrassed and uncomfortable when I saw students wave and I had no idea if they were waving at me. My vision was bad enough that it was impacting my social relationships. I couldn’t see friends and acquaintances when we passed each other on campus. I felt like I was missing opportunities to connect.
I came up with a sneaky solution. At the time, it seemed brilliant; in retrospect, it seems cowardly and inauthentic. On a day I was unable to attend our general meeting, I had my bestie, Lena, make an announcement to the room of over a hundred girls that “Jen can’t see. This means she likely won’t recognize you on campus. This does not mean she doesn’t want to know you, so don’t be offended if she doesn’t wave, and introduce yourself when you see her!”
To me this was the perfect solution. I would not have to put myself in the vulnerable and uncomfortable position of repeating this on every one of my ducky dates, and people would know that I wasn’t being an asshole if I didn’t recognize them.
There were unexpected benefits to going to a small school. When I walked with friends to and from classes, they whispered cues like “That’s Sarah, Becca’s roommate,” so I would know to say hi. I reflect with gratitude on how this small and enmeshed community enabled me to avoid countless awkward situations.
After college, I moved with my boyfriend across the country. I had to learn how to get around a new and unfamiliar area much larger than my small college town. I only knew one person, my boyfriend, reducing the availability of helpers. In Missouri, my family and friends were helpers who could drive me to appointments, networking opportunities, social gatherings, etc. With fewer comforts like helpers or familiar destinations, I had to learn new ways of traveling alone, including the use of public transportation. I would like to point out that public transportation is challenging when you cannot read the ticket machine, bus or train numbers, the stops, or street signs.
“Visual impairment” did not adequately encompass the extent to which my vision loss impacted my functioning and my identity. Although I didn’t especially appreciate the term “disabled,” I felt the phrasing, “I have a visual disability” highlighted that my condition has an impact on how I navigate the world.
Coinciding with this change in label, I encountered my first experience of flagrant discrimination. After spending months volunteering for two research labs, I had a job offer in hand. I used this offer to try to entice the other lab in which I worked to hire me. During this negotiation, my potential employer expressed concern. “How can you possibly do this job without being able to see?” I explained the assistive technology I use, and reassured him that I’d been successful as a volunteer. The role involved clinical work, and he said, “I just don’t get how you could see well enough to work with patients.”
I got the job, but only because I had an ally and an advocate behind the scenes. Months after I was brought on, she informed me she convinced this employer that I was a capable and worthy hire. I continue to love and admire her as a mentor, friend, collaborator, and overall phenomenal human being.
I questioned the use of “visual disability” because it’s vague. Although I have a visual disability, I worried this didn’t describe anything about my visual experience. The term “legally blind” was factual, practical, and to the point. Legal blindness is defined as vision worse than 20/200 in both eyes despite corrective lenses, a threshold I surpassed four or five years ago. It seemed this label adequately suggested severity, and distinguished my vision from total blindness. Further, the use of the label “legally blind” led me to feel entitled to request services and accommodations. I was legally blind, after all.
Around this time, one of my closest friends was training her service dog. I looked into it, and I certainly qualified. I got my adorable pup, Milo. The four of us – Paige and Raleigh, Milo and me – completed extensive training with Operation Freedom Paws. Milo helps me navigate crowds, sense depth, and travel independently.
Using a service dog was an outward display of my disability. It seems having a service dog automatically signals to the world “there is something medically going on with me! Please come talk to me and distract my dog.” I respond to questions about why I have Milo with, “I’m visually impaired; actually, I’m legally blind.” This answer tends to make sense to people; that’s the common association with working dogs. In fact, one of my favorite questions, asked by an overly exuberant Peet’s barista, was “Is that a blind dog?” No, my dog is not a blind dog; he is sighted.
Milo isn’t a guide dog. He is a service dog. This means he did not complete the training at guide dog academies. He helps with some aspects of my vision loss, but not others. After a few years exclusively traveling with Milo by my side, I have since reserved him for specialized activities. He’s the best little dog a gal could ask for, but he can make my professional life feel more encumbered rather than less. Still, traveling with Milo has taught me the value in confidently and publicly identifying myself as someone with significant vision loss. I now announce my vision loss at orientations and trainings. I mention it to store clerks, waiters and waitresses, and frankly anyone who will benefit from being aware.
After moving up the peninsula to San Francisco, I became involved in a host of non-profit organizations targeted at providing services for the blind. Inspired by the efforts of advocates, I felt empowered to refer to myself as blind.
I started receiving services through the Department of Rehabilitation. I completed orientation and mobility training and started using a long white cane. I learned Braille, though I am still trying to improve my speed. I began to feel “blind.”
Identifying as blind progressed my views. I learned more about the blind community and the history of the disabilities movement. I procured profound empathy for others living with invisible illnesses and the challenges of identifying with a minority group. Recognizing the reality of discrimination enlivens my belief that it is impossible to discern individual worth from ability, wealth, skin color, socio-cultural background, gender, or sexual preference. I am now more of an advocate for empowering rather than silencing minority voices.
Despite the pride I feel about my personal strength and accomplishments, I still fear disclosing my disability. I regularly have to defend my qualifications. Sometimes, others presume I am less capable due to my blindness. Other times, others presume I am receiving special treatment due to my blindness.
I have had the incredible privilege to receive two fellowships for my graduate education. Both fellowships include the diversity of applicants in their decisions. Unintentionally, friends and colleagues alluded to how I was “lucky” to be blind. I became exceedingly sensitive, and even questioned my own qualifications. Was I receiving these prestigious fellowships to boost the number of students with disabilities receiving awards?
It is appalling that those of us identifying with minority groups are forced to question our achievements. Many continue to believe that beneficiaries of fellowships and awards prioritizing diversity are less qualified. We are deserving of these opportunities both because of and in spite of our minority experiences. Unfortunately, some aspects of life are more challenging as someone who is blind or black or transgender. Until structural discrimination no longer exists, I will proudly acknowledge the ways in which my disability deserves a sensitive eye.
While working with a therapist who is fully blind, I began to process my vision loss and its impact on my identity. We discussed the challenge of being in the gray area of blindness. I don’t fit with the sighted. I obviously navigate the world differently as a result of my vision loss. I don’t fit with the blind. I obviously do not navigate the world as if I have no vision.
I can certainly appreciate the belief held by members of the blind community that those with usable vision should not call themselves “blind.” Although I believe I fall under the umbrella of blindness, I now stray from the term “blind.”
I have low vision. This description, similar to legal blindness, is descriptive and honest. It doesn’t sound as lawful or rigid as “legally blind.” Because I have low vision, I use assistive technology. I often travel with a service dog or a long white cane. I read large print and Braille. I’m sure the tools I use will continue to change, and likely so will the label.
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