As a visually-impaired child learning to play piano, it was difficult for me to sight read sheet music. I had to lean forward over the keys to get close enough to see the notes, rests, and symbols on the staff. This was not a tenable solution, so I focused instead on memorizing music and learning to improvise and play by ear.
When I got to college, I took several music theory classes, which turned out to be some of the most enjoyable and illuminating experiences of my young adult life. Sure, I had learned about grace notes, fermatas, chords, and other introductory material during my childhood piano lessons, but encountering things like secondary dominants, suspensions, and Neapolitan sixths was liberating and life-giving. I had figured out many of these concepts through experimentation growing up, and my theory courses gave me names for them. It was like learning the words to a language I already understood but didn’t know how to express.
Listening to Andrew Leland’s book, The Country of the Blind: A Memoir at the End of Sight was a similar “eureka” experience for me. Leland’s account of his ongoing journey of learning to be blind due to Retinitis Pigmentosa (RP) is informative and inspiring. His prose is vibrant, clever, and laugh-out-loud funny, and his witty interweaving of personal anecdotes, commentary, and conversations with experts and ordinary people is compelling. Leland relentlessly explores the influence of blindness on his relationships with family, faith, sexuality, art, communication, and technology, just to name a few. Along the way, he shares deep insights into disability history, advocacy, and intersectionality.
Having spent many years downplaying, dodging, and denying my own blindness, The Country of the Blind resonates with me keenly. This book is a dictionary and kaleidoscope to me as I work to forge and rediscover how my low vision fits into my identity. I expect to ponder its lessons and themes for a while, and this will likely lead to multiple articles in this space. In this post, I want to share briefly about one such takeaway that I have been reflecting upon.
Blindness is a rich spectrum and not a binary state
“There are as many ways of being blind as there are of being tall,” quips Leland in the opening chapter. Only 15% of people with eye disorders are totally blind with no light perception; blindness is a wide range and not a fixed point. Even though the state of Massachusetts has certified me and thousands of others as “legally blind,” that means something different for each of us.
Leland speaks at length about the drawn out process of losing his vision to RP. This is marked by instances when he notices changes in his visual perception, though he cannot identify the specific points in time when these occur. I can relate. The other day, my wife told me that she has noticed a gradual decrease in my vision over the past years, and I think I agree. I don’t have days when I perceive a change in visual acuity, but the number of times I need to increase the font size on my monitor to distinguish between a capital letter “B” and the number “8” seems to be going up. My family comments more frequently about that smear of peanut butter on the counter which I’m sure I just wiped down.
“Becoming blind” — a phrase one of Leland’s friends prefers to “going blind” since blindness is more of an arrival than a departure — can be confusing. In this in-betweenness, I often feel too sighted to be blind, but too blind to function fully and freely in a sighted world. Leland unpacks this tension in the following TED Talk.
Blindness is ambiguous. Its resistance to being quantified has often frustrated me. Yet I feel a solidarity with Andrew Leland’s story, and this awakens a hope within me that I am not alone in my experience. If there are others wrestling with this ambiguity, then perhaps it can become less daunting and impenetrable. Perhaps there are people who share my situation and also need this solidarity. If you are one of those people, I would like to meet you. Let’s get in touch.
Articles in this series
Do I see too well to be blind? I often feel too sighted to be blind, but too blind to function fully and freely in a sighted world. Andrew Leland helps me articulate and make sense of this in his book "The Country of the Blind."
Skiing with my eyes closed: Is blindness intrinsic or irrelevant to who I am? I wrestle with the paradoxes inherent in blindness and their impact on my identity. How can I hold the ambiguity and opposing forces related to my vision in tension with each other?
Blind inventions shape your world. You’re using them right now. Blind people and their advocates are incredibly resourceful, and their creations have profound impact on the entire world. In fact, you are likely using several technologies developed with and for blind people right now.