Thursday, August 8, 2019

New Memoir from Deaf/Blind Author

original article from WSJ
Haben Girma would prefer not to be called “inspiring.” But as a deafblind woman who lives in defiance of the low expectations many people have for the disabled, it is a word she hears often. The daughter of a refugee from Eritrea and an immigrant from Ethiopia, she surfs, she salsa dances, she climbs glaciers, and in 2013, she became the first deafblind person to graduate from Harvard Law School. (She prefers the term “deafblind,” with no hyphen, to suggest that the disability is “a cultural identity, not merely a medical condition.”)
Ms. Girma, 31, now travels the world to promote accessibility. She has earned accolades from a tidy list of world leaders (Barack Obama, Bill Clinton, Angela Merkel, Justin Trudeau) for her efforts to further disability rights.
The problem with the word “inspiring,” Ms. Girma explains, is that the conversation usually ends there—and it often feels like a euphemism for pity. “I ask people, ‘What are you inspired to do?’” she says. “Use inspiration as a verb: I’m inspired to make my website accessible; I’m inspired to learn salsa dancing. Frame it in terms of something positive you want to do in the world.”
Ms. Girma has devoted her life to subverting the presumption that disability is a tragedy or that someone born unable to hear or see is somehow helpless or unteachable. Nearly 30 years after the Americans with Disabilities Act (ADA) became law in 1990, it is often still up to her to tell companies that their apps need captions or to push educators to provide course materials in Braille. But while Ms. Girma never aspired to become an ambassador, she understands that she shows what can be achieved when someone with seemingly profound disabilities gets a chance to thrive.
This is why she has chosen to tell her story in a book, entitled simply “Haben,” that will be published on Aug. 6. The memoir is meant, in part, as a corrective: Because so few books feature strong blind or deafblind characters, Ms. Girma had few literary role models growing up. The paucity of stories about disabled people, she says, also denies everyone else a chance to learn what it is like to navigate a world that wasn’t built with them in mind.
Of course, nearly everyone knows of Helen Keller, whose inability to see or hear didn’t keep her from graduating cum laude from Radcliffe in 1904 or from becoming an advocate for disability rights, women’s rights and racial equality. But people still tend to underestimate Keller, says Ms. Girma. “So many people just assume that her teachers took care of her and deny her agency. They fail to recognize all the ways she directed her own life,” she says.
Communicating with Ms. Girma involves typing into a wireless keyboard connected via Bluetooth to a Braille computer that she holds in her lap. She receives the words in real time through mechanical pins that pop up to form letters (“Don’t worry about typos,” she says, “just keep going”). She responds in a voice that is girlishly high-pitched: She can hear high-frequency sounds better than low-frequency ones. She greets many queries with an encouraging laugh.
Ms. Girma often speaks before crowds, and she has developed a variety of tricks to look polished. With the help of a friend, she consulted the YouTube tutorials of a blind makeup artist named Lucy Edwards to learn tactile ways to apply eyeliner and mascara. “The visual world is very demanding,” Ms. Girma says with a sigh. Mylo, her German shepherd guide dog, lays at her feet.
At birth, Ms. Girma could see blurry shapes and hear carefully enunciated words in quiet settings, but both abilities decreased with time. She often felt isolated growing up and avoided crowds, forgoing both her high-school prom and her college graduation. The wireless-keyboard system, which she conceived of in law school with the help of a tech-savvy friend, has helped her follow lectures (with the help of a typist) and have fun at parties. It underscores both the technological advances available in post-ADA America and the DIY mind-set that disabled people often must develop to overcome barriers.
Born and raised in the Bay Area, which has led the country in disability rights, Ms. Girma knows that she has enjoyed more opportunities than most in her position. (Her older brother was born deafblind in Eritrea and got an education only after immigrating to the U.S. at age 12.) She always received her coursework in Braille, but she learned early on that she would need to work harder than her peers to be taken seriously. She excelled in school but nearly failed a class because she couldn’t hear when her teacher assigned homework. She earned a full-tuition scholarship to Lewis & Clark College in Portland, Ore., but struggled to get a job during the summer. Impressed by her great grades and recommendations, employers would call her in for an interview only to say upon meeting her, “We’re looking for a different fit.”
‘Anyone can become disabled at any time.’
According to the National Federation of the Blind, around 70% of working-age adults with significant vision loss don’t have full-time employment—largely owing, Ms. Girma says, to assumptions about the competence of those who can’t see. Ms. Girma’s experiences with discrimination helped spur her to go to law school, and she knew that the imprimatur of Harvard would allay concerns about her abilities. As a lawyer with Disability Rights Advocates, a nonprofit equal-rights group, she helped win a precedent-setting case against Scribd, a subscription-based digital lending library, in which a court affirmed that the ADA covers online businesses. She left the group in 2016 when, she says, she sensed that she could make a bigger difference as a public speaker.
She argues that accessibility is not only legally mandated but good business. About one in five Americans lives with a disability, according to the Census Bureau, and the World Bank estimates that there are around a billion disabled people world-wide. “Anyone can become disabled at any time,” Ms. Girma says. “You want to still be able to access your products and services even when your body changes, and all of our bodies change as we age.”
Apple ’s iPhones have built-in screen readers that allow users to hear what they touch on screen, so blind people are loyal customers. Accessibility features also often have unexpected benefits: Captioning videos, for example, makes it easier to find content through keyword searches.
Ms. Girma resists any compliment suggesting that she is somehow singular. “There are a lot of other blind and deafblind people with intelligence, but they have teachers who don’t provide materials in Braille, or face employers who won’t give them a chance to flex their talents,” she says. “The remarkable thing about me is that I was given the opportunity to excel.”
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Appeared in the August 3, 2019, print edition as 'Haben Girma.'

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