My LCA Story [Guest post]

“Perhaps I would have realized, at age twenty rather than at age thirty, that it’s possible to want sight, without devaluing the blind community and myself. My hope would have blossomed just as vibrantly, but it would have sprung mostly from wonder rather than fear, and that would have made all the difference.”

 On my last post, I wrote about research on blind people’s attitudes toward gene editing. This week, I want to share a particularly complex perspective on blindness and gene therapy. Tasha wants to see someday, but not for the reasons you might think. She also gives us a critical look at the rhetoric espoused by some treatment-focused organizations, and how they can describe treatment as a path to self-actualization rather than a fix for something broken. Her story is long, but I urge you to read to the end. Here is what she says:

I was born in Johannesburg, South Africa, on October 2, 1985. At the time of my birth, doctors didn’t notice anything wrong with my eyes, but by age four months, when I wasn’t meeting developmental milestones, my parents became worried. They began the grueling process of taking me to doctor’s offices all over South Africa. Despite the testing, the doctors couldn’t come to any sort of definitive conclusions about what my disability was. Some of them believed I had brain damage and would never read or write or live independently, while others thought I would simply need glasses. My parents became more and more discouraged.

It was only after we emigrated to the United States that I received the correct diagnosis of LCA. As a child, I struggled with the abacus, orientation and mobility, and had mixed feelings about my cane, but was otherwise pretty happy. As I grew older and classmates became less accepting, my feelings towards blindness began to change. I often said that my blindness was an administrative error, meaning that I wasn’t supposed to be blind. Mobility lessons became even more of a challenge, although I was privileged to have access to high-quality training. My mobility teacher was stumped by my inability to form mental maps of space and walk in a straight line. I would sometimes check out of mobility lessons, math class, or other tasks that were spatially challenging, and my teachers lectured me for my disorganization and bad attitude. The word “independence” came to symbolize all my shortcomings—everything I was not able to do to be a “good blind person.”

When I was first diagnosed, my mom read a quote from a book to the effect of “Blindness isn’t the true disability. A lack of independence is.” Since that moment, she did everything in her power to ensure that I would be a happy, successful blind person who accepted herself. My father, on the other hand, was acutely aware of my pain and believed that sight would ease it. So my parents presented me with two extreme views of blindness, one centering on cure, and one on acceptance, when in retrospect, what I probably needed was something in the middle.

I fully embraced my dad’s views about blindness, while fighting my mom all the way. On Sunday afternoons, my dad and I would lie on my bed and read articles from the Foundation Fighting Blindness newsletter. LCA genes hadn’t been discovered yet, but the scientists were still optimistic that a treatment would be on the near horizon. I remember the thrill that would course through me every time we read those articles. I imagined a different me: a me who wore cool clothes and who sat with the popular girls at lunch. Unlike my mother, my father didn’t really see how these things would be possible for me as a blind person. My dad’s fear for me heightened my own fear for myself, and together we created a fertile place for hope to grow.

Once, when I was about ten, someone from the Foundation came to our house to talk to us about advances in genetic research. He said that when treatments first came out, they’d be very expensive. Later, I asked my dad if we could afford them. “I’d sell the house to pay for it if I had too, Babyshoes,” he answered.

When I was sixteen, my father died of leukemia. I had not only lost a father, but an ally in the fight against blindness. I attended rehabilitation programs at the Carroll Center, where I often received the message that I wasn’t trying hard and that I would never be a productive, independent blind adult. My paraprofessionals and vision teacher echoed these sentiments. In contrast, my high school teachers were unsure of how to treat me: was I the AP student or the special education student? What was their responsibility as teachers, and what was not? I became angry at many of the adults in my life, but my anger most often turned inward. The conversations I had with my mom about self-acceptance, though extremely well-intentioned, were of little comfort. I missed those long chats with my dad, those tales of my future escape from my sworn enemy, blindness.

In college, my desire to separate from blindness only grew. My mom is an artist, and I mourned because I couldn’t fully appreciate her art, and my own inability to consistently use visual imagery in my writing. In the meantime, LCA genes were being discovered by Robert Koenekoop and other scientists. The prospect of a cure was becoming more of a reality. In graduate school, I decided to pursue genetic testing. After a couple of false starts and a lot of phone calls, during which my grief for my dad intensified, I finally received a diagnosis of LCA5. I was elated; on the ride to writing group with my friend, Dan, I could hardly speak. I felt like my whole reality had shifted. I spoke to David Brint, then the president of the Foundation for Retinal Research, and was told that clinical trials for LCA might start as soon as a year and a half from then. For months afterwards, when I was studying for one of my classes, or lying in bed at night, or on the treadmill at the gym, I played out elaborate mind movies where I had become fully sighted. My mom was buying me a car. I picked up my sister at the airport and brought groceries home. I painted. The present moment faded into the background; the mind movies were just too dazzling.

Unfortunately, I was in for several rude awakenings. After receiving extensive testing at Mass Eye and Ear, I was told that I might not be a candidate for gene therapy because my retinas had deteriorated too much. Friends cautioned me that even if I did develop sight, my brain might not know how to process the visual information. And, the promised clinical trial didn’t materialize in a year and a half. Or three years. Or five. Still, my hope continued to grow. When a treatment was merely theoretical, when my thoughts about it were mostly limited to those Sunday afternoon conversations with my dad, my hope was like a flowering plant, contained to its own pot.  But as the years past, and my frustration and fear increased, it became an invasive species—something unmanageable, something that began to impinge on other aspects of my life.

In 2014, I returned to graduate school, this time to study education. Five years earlier, I had discovered that marijuana gave me some access to light perception, which fueled my desire for sight even more. At Harvard, I shared these experiences with my roommates and friends and gradually began to understand that what the marijuana was truly giving me was a rich, three-dimensional picture of space, something I had always lacked. This explained why tasks ranging from navigating a classroom to laying out ingredients on a table had been so frustrating for me while growing up. The marijuana also gave me some exposure to light and color, sensations that I found endlessly intriguing. I had always had a difficult time having aesthetic experiences through sound, and to a lesser extent, through touch. Visual art always makes more sense to me than music. What I eventually realized was that blindness wasn’t the problem. The problem was how my particular neurology interacted with it. Vision would in fact be helpful for me, but it wouldn’t be fixing something that was broken, as my dad and the person from the Foundation had led me to believe. Rather, it would allow me to be more of who I already was.

Mine is not the classic story of a person learning to accept her blindness. I am still a congenitally blind person who does want sight, but it’s not because having sight is inherently better than not having it. In other words, my desire for sight doesn’t stem from a fear of blindness. Organizations like Sofia Sees Hope and Foundation Fighting Blindness depend on fear to generate hope, but that’s not the only way. In my professional work as a therapist and now as an academic coach, I teach my students to be curious about themselves and what they want, to question their assumptions. What would have happened if, instead of getting sucked into the fear narrative, the belief that sighted is always better, my dad had simply asked me, “Why do you want to see?” If the people in my life had been more curious about this question, perhaps my undiagnosed spatial disabilities would have surfaced earlier. Perhaps I would have realized, at age twenty rather than at age thirty, that it’s possible to want sight, without devaluing the blind community and myself. My hope would have blossomed just as vibrantly, but it would have sprung mostly from wonder rather than fear, and that would have made all the difference.