Writer, editor and podcaster Andrew Leland was diagnosed with an incurable degenerative retinal disease in childhood. As he approached middle age and his retinitis pigmentosa (RP) advanced, Leland found himself in a liminal state: not yet blind, but experiencing enough visual impairment to understand what a future without sight would look like. In his thought-provoking memoir, The Country of the Blind, Leland explores how the transition from sighted to blind is affecting his life, his view of himself and his relationships while diving deep into the history, politics and rich culture of blindness.
You write quite a bit about the realities, both physical and emotional, of RP. What was the effect of expressing these experiences while writing your book?
It was powerfully, unmistakably therapeutic. I began the book awash in a sea of misconceptions, generalizations, assumptions and confusions; what an immense gift it was to be given the opportunity to spend three years rigorously interrogating, investigating, elucidating and defusing them! One side effect of that extended introspection, however, was that if I was self-conscious about blindness before, now I’m profoundly, professionally self-aware in ways that don’t always feel especially healthy. A lot of people with RP say they don’t notice any gradual changes in their vision, but instead complain of sudden, cataclysmic transition points every few years. Why did they experience sudden declines, whereas I felt a more or less constant awareness of the gradual changes in my vision? My doctor gently suggested that as a writer immersed in a project like mine, I may be more attuned to the microlevel changes in vision.
It was useful to study these changes while writing the book, but there are days when it feels like a burden and a distraction to be so persistently obsessed with how much vision I have, how much I’ve lost and what it all means. I’m looking forward to letting go of some of that acute sensitivity to my own experience, though I suspect that might be a lost cause at this point.
You question whether vision deserves its spot at the top of the hierarchy of senses. As your RP has progressed, how have your thoughts changed regarding the degrees of importance people assign to different senses?
Our brains are wonderfully multimodal in their apprehension of the world. What we might experience as a purely visual activity—looking for a cup of coffee on the table, for instance—actually contains a great deal of information beyond sight. We’re gathering tactile cues (fingers brushing the table as they move toward the hot cup), auditory signals (the clink of a fingernail as it connects with the ceramic mug), even olfactory indicators (the steam rising off the coffee). I’ve had to turn up these nonvisual channels as my vision has gradually turned down. Looking for a cup with my fingers might strike an onlooker as a fumbling way of going about things, but one quickly grows accustomed to it. It’s not a magical blind tactile adventure; I’m just finding the cup like I always have, albeit in a different style. If I’m in a frame of mind where I’m mourning the loss of my vision, this can feel like a diminishment, knocked a few rungs down the ladder of the senses. How much easier it was to do things visually! But my day-to-day experience, on the whole, underscores the fact that vision doesn’t really deserve its elevated status. The brain is plastic, and can settle into other modalities quite comfortably.
You write, “I’ll never be native to blindness, the way that those born blind are.” Can you elaborate on how your experience of losing something you once had differs from being native to blindness?
I think there are advantages and disadvantages to being congenitally blind (from birth) versus adventitiously blind (a phrase that always makes me think of a blind adventurer). The congenitally blind—if they’re lucky enough to have early access to good blindness training—have the cognitive advantage of wiring their brains nonvisually from the start. They’ll read Braille faster than I ever will, even if I make it my full-time job to increase my reading speed: It’s like being a native speaker. I’ve met a number of congenitally blind people who bristle at the ubiquitous term (some would call it a euphemism) vision loss. They haven’t lost any such thing! For this reason, I have wondered if those blind from birth have an easier time accepting and celebrating their blind identity. But these sorts of generalizations only go so far. So much depends on the environment one grows up in, and there are many congenitally blind adults who have to work through the damage of childhoods spent sheltered from the world, with loving families who have abysmally low expectations for their independence and abilities.
The adventitiously blind, even though they have to catch up on blindness skills, have the advantage of having grown up with an intuitive understanding of the shared but largely unspoken grammar of the visual world. This includes everything from the semiotics of color (how to explain why red is angry, or blue calm?) to the infinite stream of gestures, shapes and objects (USPS mail-carrier sacks; Day of the Dead decorations; elephant skin) that are rarely described. I ran across an account of a blind person saying that they had no idea how people held their arms when they’re being sworn in by court clerks. What does “raise your right arm” mean? Is it an angled, “Sieg Heil”-style salute? Or does it go straight up, like a grade schooler waiting to be called on?
In short, the congenitally blind might have less work to do to find comfort in the world of blindness, and perhaps the adventitiously blind will find it easier to intuit many aspects of the visual world we all live in.
What would you say to people who instinctively think of blindness as sad or tragic?
It’s a harmful but understandable mistake. In one sense, they’re not wrong. The experience of losing vision after living with sight is unavoidably painful. But that pain is, ideally, temporary: One mourns the loss of sight, and perhaps there will always be occasional twinges of remorse or frustration, but there are very few blind people who live their lives carrying around the constant feeling of aggrieved sadness and tragedy. I think it comes down to a kind of emotional neuroplasticity. In addition to the sensory adjustments (learning to navigate traffic by ear, or knowing when chicken is done by the way it feels when you slice it), we can also learn to process difficult feelings, so that something that once felt tragic and insurmountable eventually becomes benign, normal. This is an idea that I’ve found many intelligent, compassionate sighted people have an incredibly difficult time accepting. The received sense of blindness as a tragedy runs very deeply and stubbornly through the culture. Nearly every blind person I’ve met has had the experience of casually going about their day—shopping, traveling, whatever—and having their good mood shattered by the noxious, unsolicited sympathy of strangers (or family, for that matter): Bless you. I’m so sorry.
“One mourns the loss of sight, and perhaps there will always be occasional twinges of remorse or frustration, but there are very few blind people who live their lives carrying around the constant feeling of aggrieved sadness and tragedy.”
Artificial intelligence has received quite a bit of play in the press lately. What are your feelings about the possible uses of this technology for blind people?
Like the disabled community more broadly, blind people don’t just benefit from advances in technology, they often drive them. Blind people were early adopters and often collaborators on the development of some of the technological tools that underpin today’s AI revolution, from synthetic speech (think Siri or Alexa) to the origins of “machine vision,” e.g., advances in scanning and Optical Character Recognition (OCR) that first automated the process of making printed books accessible to blind readers.
There’s a great app called Be My Eyes, which connects blind people with sighted volunteers who temporarily access the camera on the blind user’s phone, allowing them to read the recipe on a box of brownies or answer queries like “Does this shirt match these pants?” Be My Eyes recently released a feature called “virtual volunteer,” in which OpenAI’s GPT-4 image-to-text technology will replace those human volunteers for a wide range of tasks.
But just as there are tasks for which a Be My Eyes user might prefer a human volunteer (in the case of a more subjective judgment, perhaps, like describing a photo of a loved one), technology will never replace the human interdependence that’s as much a hallmark of the disabled experience as our reliance on (and obsession with) tech.
While discussing the stigma attached to blind people’s use of canes to get around, you said that you sometimes felt like an impostor while using one. Has that feeling of fraudulence changed over time?
The feeling of fraudulence was at its worst when I first tentatively brought the cane out in public, when I really felt like a sighted person carrying a cane like an affectation. Since then, I’ve continued to lose vision, and the cane feels more immediately necessary. Now that I know (from painful experience) the kind of mayhem I can cause for myself and others if I try to travel without it, and how much more quickly and confidently I move with it, I don’t have nearly as much ambivalence. It’s become my trusty sidekick.
I still feel fraudulence around blindness more broadly, though. I sometimes feel reluctant to call myself blind when I still have enough residual vision to recognize faces and read large print.
This is shifting, too, but slowly. I’m consciously working to accept the blind parts of myself as sufficiently blind for me to embrace the identity as my own. That feeling of acceptance, which I’m arriving at not only by losing more vision but also by immersing myself in the history, culture and communities of blindness, is one of the biggest gifts that writing the book gave me.
“I’m consciously working to accept the blind parts of myself as sufficiently blind for me to embrace the identity as my own.”
Can you tell us your definition of what you call “the blind sense of humor”? Has your own sense of humor been influenced by your experience of blindness?
I was surprised by how much I read and thought about Samuel Beckett while writing this book, but I think it’s because his sensibility feels connected to the blind sense of humor: the ability to look at an impossible experience and find a kind of transcendent absurdity in it. I really hate the idea of “cheering up” someone who is going through a difficult time. Pouring sugar and sunshine into darkness and pain feels artificial and to me only exacerbates and underscores the intractability of the problem. But comedy that accepts the difficulty and finds humor within it—that’s the good stuff.
There are two memoirs by writers with RP that were important to me as I began thinking seriously about what I was going through: Jim Knipfel’s Slackjaw and Ryan Knighton’s Cockeyed. Both books helped me see blindness as a kind of Beckettian slapstick, in which physical mishaps open the door to an existential shift in one’s relationship with the world. No matter how skillful you are as a blind person, there are inevitable moments of apologizing to lampposts, sinks that turn out to be urinals or (as one blind blogger put it) “jalapeños in the oatmeal.” The blind sense of humor is the ability to find the hilarity and joy that lies coiled in every one of these daily absurdities.
“No matter how skillful you are as a blind person, there are inevitable moments of apologizing to lampposts, sinks that turn out to be urinals or (as one blind blogger put it) ‘jalapeños in the oatmeal.'”
Do you think a cure will ever be found for RP?
Retinal specialists have been telling me that a breakthrough is just around the corner since I was diagnosed nearly 25 years ago. To be fair, there has been real scientific progress, even if there’s still nothing to stop the ongoing degeneration of my retinas. My attitude in general about cures is: Keep up the good work, science, and give me a call if there’s something definitive you can do to help. In the meantime, I’m going to work on figuring out how to lead a fulfilling life as a blind person. The alternative—obsessing over Google alerts about new clinical trials and miracle drugs, year after year, decade after decade—feels entirely counterproductive to the emotional work I’m doing to accept blindness.
How are ableism and cures interrelated?
There’s nothing particularly ableist about a scientist trying to find a cure for blindness. The problem comes from doctors’ and researchers’ ignorance about the lived experience of blind people. It’s far too common to receive a diagnosis of RP from a doctor who has no sense of the possibilities of a joyful and productive blind life; with proper training, one might not even need to change careers. And on the research side, there’s a similar tendency to paint blindness as a quasi-terminal disaster in the service of fundraising: John’s life was destroyed when he lost his vision. Won’t you donate to prevent his daughter from sharing the same fate? This rhetoric reinforces the low expectations and stigma that define blindness in the public imagination.
Looking back at the process of writing this book, was there anything you would have done differently?
Early in the reporting process, one of my sources—a sighted historian—asked me who else I was talking to. I rattled off the names of blind MacArthur geniuses and Guggenheim fellows I’d already booked interviews with. He praised me for assembling such an impressive coterie of highly accomplished blind people, but then he admonished me to make sure I also spoke with blind people at the margins, who were far more representative of blind life in the U.S. than the decorated, overeducated blind folks I was initially drawn to.
I took his advice, and did talk to blind people working in sheltered workshops or refilling vending machines or who were unemployed, sometimes houseless and surviving on government assistance. But in the end, I still ended up focusing more on the blind people who I aspired to emulate as I entered the world of blindness. The book is, in part, my attempt to rehabilitate the image of blindness for myself (and my readers), and I think at least superficially, it’s easier to make that case by profiling successful blind artists, writers, entrepreneurs and scientists—all of whom face tremendous barriers of their own—than it is among the blind people living at the margins. But if I had another three years to write the book, or another 300 pages, I would have done more reporting on blindness, poverty and unemployment. I plan on continuing to write about disability, so I’ll hopefully get that chance soon.
What are you working on next?
At the moment I’m particularly interested in the question of how the process of making something accessible to someone with a disability—an audio description of a TV show for a blind person, say, or a plain-language translation of a complicated text for someone with an intellectual disability—changes the meaning of the information that’s being conveyed. One thing I learned in writing the book, and becoming blind, is that the experience of disability changes one’s relationship not just with other people and the physical, built world but also with information itself. In the case of blindness, the way I read, watch and listen has been radically transformed. This doesn’t just change my identity as a media consumer; it has profound implications for the way I understand and access the world. And I’m beginning to see how this dynamic plays out with other disabilities, as well: Deafness, autism and mobility and intellectual disabilities all have fascinating and complicated relationships with language and communication. So I may be working toward a larger project around these ideas of disability and information. We’ll see.