As a child, Andrew Leland, like most kids, knew seeing in the dark wasn’t easy; he’d stumble over tree roots or other people’s feet — things that lay in plain sight to everyone but him.
By the time Leland was in high school, he knew something was wrong. Doctors soon confirmed the diagnosis: retinitis pigmentosa — a rare eye disease which, over time, gradually narrows his line of sight as if he sees the world through a tube.
“First, it's night blindness, then a loss of peripheral vision, and then eventually the central vision starts to go,” Leland explains. Although the initial diagnosis as a teenager left him with “an almost glacial feeling of change,” it would be decades until the disease would ultimately render Leland totally blind.
Today, Andrew Leland’s world has transformed. His deteriorating sight forced him to abandon driving; he uses a cane to get around; he has educated himself with new sight-assisting technology; and he has adapted, somewhat, to the many subtle and not-so-subtle accommodations he’s had to make in a world built for the sighted.
"Part of this journey has been to just accept blindness, even when there's vision mixed in, as a state that is impermanent, but [one] that also I just have to be present in,” says Leland.
Jonathan Bastian talks with Leland about his experiences and his newfound identity. KCRW listeners might recognize Leland’s name as the longtime host and producer of The Organist, which was a collaboration with McSweeny’s.
Penning his book “The Country of the Blind: A Memoir at the End of Sight” allowed Leland a broad exploration of blindness — not just from a physical perspective but also its history and innovation.
“The typewriter was originally invented as a blind reading machine,” Leland explains. “Ray Kurzweil develops the Kurzweil Reading Machine, which is the size of a commercial washing machine,” and was used by Stevie Wonder and Ray Charles. He says that the offspring of Kurzweil’s technology is “in my iPhone — just scan that text and it can read it aloud to me.” From audio books to the original LP records, Leland points to numerous examples of “the process of human innovation that is driven by an experience like disability.”
Still, with a self-described “foot in both worlds,” Leland says his vision loss also offered him a first-hand perspective on disabilities, societal norms, and civil rights. He describes how he initially felt like a “fraud” for using a cane and talks about the aversion he feels when he sees people who “yank their toddlers out of the way when I'm a full block down the road.”
“There's just such deep-seated stigma and ignorance about what blind people are capable of and what disabled people are capable of,” he says. “It's inescapable that I wouldn't feel marginalized by it.”
Has this sense of marginalization impacted the way Leland feels about himself? Leland shares that the persistent question he had was whether “the sense that blindness would emasculate me” and that “being a man had a lot to do with independence and power that comes with being non-disabled and being sighted” — and whether that impacts one’s sexual identity.
“A lot of the same forces that give us a sense of what is sexually desirable work on blind people, but they just sort of are accessing it in different ways,” he says. “It’s about participating in the world of images, and blind people need accommodation to participate, but that doesn't mean that they are not full participants.”
Andrew Leland, pictured here, laments that for as much as he’s made peace with blindness, there’s a core that’s deep seated and hard to shake that still clings to vision. Photo by Gregory Halpern.
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