How a basement hideaway at UC Berkeley nurtured blind innovators

2022-04-19 07:12:45 By : Mr. Stephen Zhao

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B ERKELEY, Calif. — If, in the fall of 1987, you found yourself at the University of California, Berkeley, and you made your way through the sloping, verdant campus to Moffitt Library, you could walk through the doors and take two flights of stairs down to the basement.

Turn right and you would find a door tucked in the corner — room 224, though the placard isn’t written in braille. After unlocking the door using a key with a ridged top, you’d walk through a small lobby with tables, chairs, and a “sofa” made of seats pulled from a van. The smell of lived-in-ness, a mix of takeout and coffee and books, permeates the cramped space and makes the tip of your nose perk up.

This is how Joshua Miele and other blind students found their way to this underground hideaway. Its university-sanctioned name was the blind students study center. But pretty much everyone called it The Cave. “It’s where the bats hung out,” Miele explained. 

It was loosely organized, loosely supervised; if it was run by anyone, it was the students.

A physics major from New York state, Miele was a freshman that year. He spent hours every day in one of eight bunker-like rooms lining The Cave’s windowless hallway, studying, running his fingertips along pages of braille, and dictating his homework to a reader who transcribed it. Today, he’s a MacArthur “genius grant” winner who builds adaptive technologies at Amazon, work that has made it an industry-wide expectation that consumer devices are accessible to people who are blind and have other disabilities. 

He is just one of a generation of leaders, innovators, creatives, and geniuses who are reshaping the world — and have roots in The Cave.

We like to tell ourselves that geniuses go it alone. When a success story involves a person with a disability, it is often framed as an act of overcoming, an inspiring tale of perseverance in the face of unimaginable tragedy: losing a sense or gaining an impediment. But the story of The Cave shows quite the opposite, that genius is forged by community, in the sharing of information, tools, and resources. That disability is not a curse. 

That same fall at “Cal,” there was also Marc Sutton, a tech whiz and sixth-year student in the room across the hall from Miele. Sutton was majoring in environmental studies after finding computer science classes and professors unwelcoming to a blind person. A botany professor had shut him out of his class because he “couldn’t benefit” from the hands-on lab work — it was before the landmark Americans with Disabilities Act outlawed such discrimination — so he started giving tours to blind people at a botanical garden.

Sutton works at Apple now, finding software bugs and designing solutions that make it possible for blind people to use Apple products, like phones and computers. 

Others in the expansive Cave network went on to become pioneers in their fields – running major nonprofits, classrooms, and adventure tours for the blind, writing books, practicing law, serving on presidential commissions, and pushing the disability rights movement into the 21st century. Many of them point to The Cave as the place where they found a certain power, learned how to cut through discriminatory bureaucracy, and felt deeply understood for the first time. They saw new possibilities for themselves in the other Cave dwellers, living examples that contradicted the narrative they were fed by a world that’s hostile to difference. At Berkeley, students who were ostracized in their hometowns, often for being the only blind kid around, became part of a rich lineage, and a vast disability community.

It was in The Cave that Miele learned that having a disability didn’t mean inhabiting a broken body. And it was where Miele said he started to become aware of “design and assumptions” — how his world was shaped by “ableist thought behind who’s in control of the tools that we use, whether those tools are intersection controls or building entrances or computer technology.” 

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A graduate program, a street curb, a home, a workplace — anything — that is created without disability in mind will exclude people with disabilities by design. “The assumptions that go into it perpetuate the ability of certain people to be privileged to use it and others not,” he said.

In The Cave, Miele and his classmates learned they could challenge those assumptions. They could design a world for themselves. So they did. 

M iele didn’t pick Berkeley for its activism. “I came to Berkeley for the physics, and stayed for the disability,” he said. 

He grew up in Brooklyn, and later Rockland County, north of New York City, where he felt “most kids were afraid of me because I was different, and, for the first time in my life, I had classmates who thought it was fun to mess with the blind kid,” he said. “ I’m stronger because of it, but it wasn’t much fun.” His thoughts frequently strayed from the terrestrial world. He devoured all of the braille books his classroom bookshelf held about outer space and told his teacher there was nothing else to read. (He interned at NASA while he was at Berkeley.)

Arriving in the Bay Area as an 18-year-old, Miele didn’t think of himself as a person with a disability. He had gone to a camp for blind children in Vermont when he was young, but that was his only real exposure to other blind people. All the examples of blind people in the media were “bumbling fools,” he said, and he wasn’t that. 

“I was a total ableist before I came to Berkeley. I believed, sort of had these unquestioned assumptions about disability that were just as bad as anybody else,” he said. 

Miele never lacked confidence, but he wasn’t yet secure in being blind. Into adulthood, he tried to avoid being “blinky” at all costs. That is, he cringed at people who acted “stereotypically blind,” who felt people’s faces or talked loudly on the bus, or smacked their canes hard against the ground. They took up too much space, they gave blind people a bad reputation, Miele thought. 

At Berkeley, Miele realized that he “didn’t have to have contempt for that behavior, that it was just my fellow blind people trying to make it,” he said.

Like a lot of young adults, students in The Cave wanted to get out of their hometowns, out from under well-intentioned, overprotective parents. Berkeley, as a safe harbor for outcasts of all kinds, was their chance. 

Sutton had craved something different from the “sterility” of growing up in middle-class, suburban San Jose, Calif. He was bused to school with other blind kids and students with disabilities, but he was in class with mostly sighted kids. He felt isolated from both sets of peers. On the bus, he thought, sure, he was blind, but he wasn’t like these other kids with severe disabilities. And at school, he was uncomfortable with the sighted kids. “For me, it took really until I got to Berkeley” to find his sweet spot, he said. 

“People became adults at The Cave,” said Lucy Greco, who was hired in 2005 to supervise the center. “It was a rite of passage being there. It was a very valuable part of their life.”

Miele went through his own learning curve. He got a guide dog, a yellow lab named Xilo, the summer before college because he thought that’s what blind people did. It took him three years to finally just use a cane, like most of his blind friends, to navigate through the world.

Students got keys to The Cave, so they were there all at all hours, immersed in homework, talking to a reader, or comparing notes on professors. They ate cheap meals, planned pranks — like shipping a box of rotten fruit to a Cave supervisor using an extremely slow, low-cost courier for blind people — and crammed into study rooms to pass around joints with the lights off, “because no one could see or, the people who could see some, it was like, too bad,” Sutton said. 

Miele also spent hours at another Berkeley library, in a room full of maps, running his fingers over a 6-foot-wide model of the campus to learn his way around. Anytime he had to go somewhere new, he’d figure out the best route on the model. He discovered very young that maps helped him learn. Rockland County was a “sidewalk-less, transit-less suburbia,” in stark contrast to his native Brooklyn, which made it tough for a blind kid to get around on his own. Then he found a book of maps he could feel with his small fingers — trails and lakes and other interesting textures he hadn’t yet felt with his feet. 

When Miele stood in the library as an undergraduate, feeling the contours of mini Berkeley, many cognitive scientists still believed blind people couldn’t use street maps. It was, in a way, a subversive act. Reading that map planted a seed. Decades later, he would invent a way for blind people to print tactile maps of any city in the United States and, eventually, the world.

While still in school, he got a job at Berkeley Systems, a small software company where Sutton worked. 

There was a crisis brewing at the time, in the early 1990s. The most common computer operating system was text-based, meaning blind people could use screen readers on them. But the world began to shift toward graphical Windows and Apple systems, with visually complex interfaces that required a mouse for navigation. Screen readers weren’t yet ready for the multiple windows and overlapping visual elements, like buttons and check boxes and lists and tables. “So blind people were definitely feeling like, oh, we just made some progress and now we’re going to lose it,” said Sutton. 

In response, Berkeley Systems developed Outspoken, the first screen reader for Mac computers. Miele was hired to do tech support and software testing, and then his job expanded to include marketing, technical writing, and customer service, walking users through how to use the new tool.

Working there was exhilarating. “I’m the guy that’s helping figure out how blind people are going to use the next generation of computers,” he remembered thinking. “That’s badass. That’s really fun.” It was a feeling that would transport him from one ambitious project to the next over the next 30 years. 

M iele remembers clearly how he met Sutton. Miele was struggling to get rid of some stubborn formatting in a document, and others in The Cave suggested he ask Sutton for help. “Hey, man, I have some chips and avocado. You want some?” Sutton said in greeting when Miele popped into his sparsely decorated office. And then he told Miele exactly how to fix the document. “It was like he’d pulled this secret code out of his head,” Miele recalled.

In the year they overlapped at Berkeley, Sutton and Miele formed a friendship of contrast. Miele was bold and unafraid of conflict, while Sutton was nonconfrontational and shy. They had developed different strategies for handling people’s ignorance about blindness. For Miele, it was often impatience — just get out of my way. Sutton tended to let things slide off his back, and generally wanted as little attention on him as possible. “He kind of infused me with some boldness that I wasn’t quite full of,” Sutton said, “and I probably infused him with some tact.”

The Cave was where iron sharpened iron, academically — tricks for surviving Berkeley were as much a currency as smart readers and cheap weed — but also personally. A rotating cast of characters, readers as well as students, created its unique synergy and chaos. 

“I’m the guy that’s helping figure out how blind people are going to use the next generation of computers. That’s badass. That’s really fun.”

Berkeley’s Disabled Students’ Program gave students a stipend for hiring people to read their textbooks aloud, record books on tape, or type their homework. But the students were in charge of hiring their readers, and managing their hours and assignments, and they quickly learned who was good at what.  Among the most memorable of the eccentrics in The Cave was the MIT dropout who smelled like pipe tobacco, “coughed like death,” and, as Miele remembers it, had severe obsessive-compulsive tendencies, but whose physics tutoring single-handedly helped him graduate. 

Because blind people have to work so much harder to complete basic tasks, they played hard, too. Students would bring a stack of books for their readers and a six-pack of beer for when they finished. If they worked overnight on an assignment, they would take shots of liquor in the morning, and never alone. It was a bit like “a co-ed blind frat, just in the partying sense,” Miele said. 

A Cave staff member remembers one finals week when the air conditioning broke and the student suite was sweltering. So a student pulled off his pants and worked in his underwear, knowing a lot of people in there couldn’t see him anyway. 

This unregulated, ad hoc organization of things made for a certain magic. Once things are systematized, neatly sorted into bureaucratic hierarchies, “you’re not in charge,” Sutton said. “We got to be in charge.”

A main attraction was The Cave’s slate of tools. It was the only place on campus where students could access a wide array of special technology that let them do their work at the academic clip that’s required at one of the top public schools in the country. 

They could type search terms into a talking computer terminal that would then read them books, articles, and other materials from the library’s catalogs and databases — pre-internet. It was the only such terminal on campus, hard-earned by Sutton, who convinced a computer science professor to set aside a few thousand dollars in the department’s budget for the gadget. 

A CCTV would blow up text on a screen, big enough that those with low vision could read independently with greater ease, instead of straining to decipher minuscule text with their faces inches from the page. The Cave had bookshelves full of reel-to-reel and cassette tapes of frequently used books. It had an early Kurzweil Reading Machine, which could scan, digitize, and read back pages of text out loud. A Thermoform machine was used to press warm copies of braille text and — it didn’t take long for a bunch of college students to figure out — make grilled cheese sandwiches.

“There was a part of me that was also very envious of them,” said Greco, who is blind. “I saw all the work that we did advocating for ourselves when we were younger was paying off.” 

Coincidentally, she purchased one of the first few copies of the screen reader Miele and Sutton worked on at Berkeley Systems. When she moved from Canada to the Bay Area with her husband, she didn’t know anyone in town “except for these two guys that would answer the phone occasionally” at the company when she called for help. One day, she explained her situation to Miele, and asked if they could meet for dinner: “He said, ‘Sure, Just look for the guy with lots of scarring on his face.’” 

M iele knew from an early age that he stood out. A mentally ill neighbor poured acid on him when he was 4 years old, burning much of his face and making him blind. But he never wanted that day to dominate his life. It took him years to let that story be told in its entirety. 

Unsure of how to reconcile his inner self with the outward appearance people judged him by, Miele was determined to let his work define him instead. “I always wanted it to be sort of like, ‘Oh, Josh is all these things and he also happens to be blind and burned,’” he said. 

He’s been an inventor and an educator, and board chair of the San Francisco LightHouse for the Blind and Visually Impaired, whose CEO is another Cave alumnus, Bryan Bashin. In his free time, Miele wrote a coding script ( shared on GitHub ) that turns jazz chord charts into braille, so he could learn to play jazz on his bass guitar with an old friend from The Cave. 

His invention of TMAP, formally Tactile Maps Automated Production, grew out of two insights. First he had to figure out how to use MATLAB, a product engineers and scientists use to analyze and visualize data, for his graduate work in psychoacoustics, the study of how people perceive sound. It took him six months to modify the program to present data with sound and tactile models, instead of visuals. And he realized he could then use his version of MATLAB to benefit more people.

While working at the Smith-Kettlewell Eye Research Institute, he pulled geographic data of downtown Berkeley, turned it into a format that could be embossed on paper, and sent it to a printer. The first time, it was more or less gibberish. But with a tweak to one line of code, he got what he wanted. 

“I pushed the button, I held my breath, I pulled the sheet out of the printer and looked at the map and was like, ‘Oh, my God, this was a map that was made by a computer because of a software I wrote,’” he said. “And I realized at the time, this is going to change everything.”

“‘Oh, my God, this was a map that was made by a computer because of a software I wrote.’ And I realized at the time, this is going to change everything.”

Anybody with access to a tactile printer or embosser can use the tools he built to plug in a location on the TMAP website and print out a raised map, giving them confidence that they can navigate independently — just as he had used the Berkeley model many years earlier. “That implies blind people want to go places,” he said. “It implies that blind people are going to be walking around, by themselves, without being led around by somebody.”

Now, at age 53, he is a MacArthur “genius,” working on any number of accessibility projects at Amazon. 

“It’s just been the most exciting time of my professional life in the last decade,” he said. 

What used to be pet projects and small-scale endeavors are now tools that are used by people around the world, and they set inclusion benchmarks for everyone else in the tech world. He built YouDescribe , a searchable platform where people can upload audio descriptions of YouTube videos. YouDescribe has users in 152 countries, and will have close to 5,000 described videos — ranging from music videos to full movies and instructionals — by the end of 2022, according to data collected by Smith-Kettlewell. 

Miele also dreamed up WearaBraille, a device that lets users type out text messages in braille by tapping their fingers on any surface using a virtual wireless keyboard controlled by motion-detecting finger loops. And the free wayfinding app, overTHERE , which he hopes to update and revive with the MacArthur recognition, which offers him a sizable five-year grant to spend on whatever he wants. 

His work at Amazon has contributed to the creation of rich braille and tactile interfaces on the company’s screen readers, tablets, and even microwave ovens. He helped design Alexa’s Show and Tell feature , which lets users identify items as they unpack groceries and cook, by holding them up to an Echo Show device. And Miele helps lead Amazon’s effort to create a robust library of audio descriptions for Prime Video. 

Miele’s heart and genius, said Peter Korn, a longtime colleague and director of accessibility at Amazon Lab126, are in designing “innovative and delightful experiences.” 

B erkeley had long been home to a significant — and revolutionary — disability community. This is the city where the disability rights movement was born, and became a formidable political force, successfully advocating for passage of the Americans with Disabilities Act in 1990 and other reforms. Berkeley was the birthplace of the National Federation of the Blind, started by law professor Jacobus tenBroek, whose analysis provided some of the legal foundation for important civil rights legislation and the Supreme Court’s Brown v. Board of Education ruling. 

This city was home to mathematician Newel Perry, who started the California Council of the Blind, and Judy Heumann, a powerhouse disability rights organizer. The Center for Independent Living, which was kickstarted by Ed Roberts in Berkeley, was an offshoot of the school’s program for disabled students, and was the first organization created to help people with disabilities to live how they wanted.

All were still around — in flesh or in spirit — when Miele showed up. The movement was still “ringing in the culture,” he said, especially in the way members of The Cave supported one another. Jim Gammon saw it firsthand. In 1982, he had been working for two years as a Cave supervisor (though, in his early 30s, Gammon was more like another classmate) when he saw a job opening as an intake coordinator at the Berkeley School of Optometry. After speaking with other blind people working at low-vision clinics, he decided he could do the job with some accommodations, and applied.

But Gammon never got an interview. Instead, he got a call from the clinic eye doctor, who said he wouldn’t consider Gammon for the job because “there’s no way” a blind person could do it, Gammon recalled. He filed a grievance with his labor union, and he told the students in The Cave. “And they got all steamed up about it,” and marched on the university chancellor’s office at California Hall with signs that said, ‘UC Screws the Blind’ and ‘UC Has No Vision,’” Gammon said. The students saw him as an elder, a future version of themselves, unable to get a better job because he was underestimated for his disability. 

Sutton was part of that protest. He remembers “making a ruckus” in the heart of campus, informing passersby of the optometry school’s “huge hypocrisy.” It could only be worse if the Disabled Students’ Program itself was rejecting a blind job applicant, he thought. 

Even though he arrived at Berkeley five years later, Miele heard about Gammon’s story, and “saw it as a cautionary tale.” He resolved to never let that happen to him. 

In the end, Gammon was vindicated at a hearing, and the clinic got a slap on the wrist for discriminating against him. But it showed how the students were willing to raise hell for a supervisor — and for each other — because they knew they were likely to face similar hurdles if they didn’t address them in the moment. 

If a department refused to buy talking computers so people who were blind or had low vision could use them, students from The Cave banded together to create a chorus of squeaky wheels. If a professor wasn’t accommodating, they would coach one another on how to push back. And if it came down to it, they knew they had a whole community of people backing them up. Much of that era’s accessibility infrastructure — if it could be called that — was grassroots, scrappy, and done by sheer force. 

In the decades that followed, the demands were less about access to basic accommodations and legal protections (though those issues haven’t gone away), and more about social inclusion and true equity. 

Some estimates place the number of people with a disability at 15% of the world’s population, with a large share of that group living in poverty. Yet disability is often left out of conversations about justice, equality, and human dignity. So for Miele, it meant so much to see his name on the list of MacArthur fellows , alongside that of journalists documenting the fight for liberation, scientists scouring for disease clues and cures, and some of the foremost artists of our time. 

“We’re talking about incarceration, we’re talking about borderlands and the injustices and inequities of our society around race and class and gender,” he said. “And the fact that my work is included in that list is a really exciting signal to me from the world via the MacArthur Foundation that accessibility and disability equity are worthy of being in that lineup. And I know that. And the people that I work with everyday know that.”

As a matter of equity, it’s important to Miele that whatever he creates is available to the people who need it. And that means a device should not cost more just because a person is blind or has low vision. Part of the solution is using “off-the-shelf” products and tools and building accessibility into things. But it’s also a vast pool of computer code that is created and shared publicly on the web for free. There are a bunch of small groups using this code to adapt existing tools or create new ones for accessibility, like open-source screen readers, braille note-takers, and text-to-speech applications. Very often, these are vital but underfunded efforts kept alive by volunteers. 

“In the same way that governments support essential industries because they can’t afford to have those industries fail sometimes, I think we need to support accessibility and open source, because it’s critical,” Miele said. He’s been thinking a lot about that problem, and how he could use his MacArthur grant to start a foundation that could help sustain existing work and fund new projects.

He’s also focused on changing the public’s mistaken perceptions about blindness. 

“In the same way that governments support essential industries because they can’t afford to have those industries fail sometimes, I think we need to support accessibility and open source, because it’s critical.”

In fiction, there are the blind sages and seers, the Marvel-ized blind superheroes, and the innumerable figures of speech that frame blindness as the absence of light, information, and knowledge. And in real life, there are “precious few blind people” who are known for their contributions to the world, Miele said.

Last fall, Miele made his way north of Berkeley, around the curve of Wildcat Canyon, to Rolling Hills Memorial Park in Richmond, Calif. There, he visited the grave of tenBroek, the blind Berkeley law professor, who died in 1968. It all became very clear. He wants to teach people about blind leaders like tenBroek. 

“I’d like there to be more blind people who are known for doing good in the world,” Miele said. 

And hopefully, by embroidering the names of blind “badasses” onto the patchwork quilt of history, the fear can subside. 

“People are really terrified of disability, and especially blindness,” Miele said. “There’s research that shows that a significant number of people would rather be dead than blind. And I’m here to tell you, it’s definitely better to be blind than dead. I’m having a pretty good time.”

Life with a disability is much richer, more complex than the myths we are sold. It’s a tale of networks and inventiveness, and of the devastatingly ordinary yearning to be witnessed in our entirety. Not as superhuman or subhuman; just as human. 

T he Cave no longer exists. The dynamic, communitarian version shut down in 2009, part of an effort by Berkeley to formalize the center and comply with federal regulations. The library basement is now a design studio, and the Disabled Students’ Program, with its own building at the heart of Berkeley’s campus, helps with educational accommodations. 

Greco, the Cave supervisor from 2005 until it closed, still feels conflicted about her role in ushering in the end. “I kind of felt like I was being made into the police officer. I was The Man all of a sudden,” she said. “I knew the stories of how important this place was to all of them, and I had to change it. I inevitably shut the door on it for the last time.”

The basement’s lockers, full of decades-overdue audiobook vinyls from the Library of Congress, dusty books, and long-forgotten knick-knacks, were cleaned out. The Thermoform, which printed braille and grilled cheeses, was going to be trashed – near-sacrilege to Greco – so she found a new home for the machine with a Cave alum, who then gave it to Miele. The Chinese restaurant where the Cave community would gather to celebrate graduations has been replaced by new development. There are curb cuts and talking crosswalks at most intersections downtown. 

But some things are the same. The collegiate spirit of unrest still manifests as bullhorn protests, about anything from far-flung conflicts to local issues, during lunchtime on the campus’s central drag. 

In 2017, students organized to demand a new kind of center for those with disabilities, a place where they could enjoy the full social lives that define college years. In a tense back-and-forth lasting years, student activists lobbied the university for funding, and for a space. They were offered room in another basement. This time, they said no.

In 2020, Berkeley finally agreed to establish a Disability Cultural Center in a ground-level suite within a cluster of corrugated metal portable buildings. 

The center will be a service and social hub for students with all kinds of disabilities, including people with chronic health conditions, psychological disorders, and learning disabilities, wheelchair users and those with sensory problems, as well as those who are not “out” about their disabilities, said Ann Kwong, the center’s coordinator. It will also serve blind students.

The intention is to create a space “for people to feel comfortable, safe enough, and [the] vulnerability to experience their own change and shift in disability,” she said.

It will be, in essence, a Cave — even if not The Cave — for a new generation.

Sharon Begley-STAT Science Reporting Fellow

Isabella is the inaugural recipient of the Sharon Begley-STAT Science Reporting Fellowship.

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By Katie Palmer and Mario Aguilar

Reporting from the frontiers of health and medicine