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Haben Girma, who is helping to raise awareness for World Sight Day on Oct. 13, is part of Oxygen’s digital series In Progress 52. In 2016, Oxygen's Very Real is featuring 52 outstanding women: that's one woman a week, for 52 weeks. Check out the series here!
Haben Girma is a deaf-blind person – as well as a brilliant, self-sufficient star – and I didn’t really know how to deal with that at first. I fell into the same traps that befuddle many people who meet her. I was riddled with curiosity about this woman who became the first deaf-blind person to graduate from Harvard Law School, who was honored by Obama at the White House, who schools developers for Apple on accessibility, and who surfs the ocean’s waves in her down time. That is an impressive resume, regardless of able-status. ‘How did she do it -- like, physically how did she do it all?’ I wondered. ‘How is she corresponding with me so reliably?’ 'How does she navigate the world without the senses I rely on so heavily?’
I was also nervous about accommodating Haben for our pending interview and shoot. I fretted heavily over the logistics, about elevators and taxis. I wondered if I was asking too much from her.
For her part, Haben didn’t seem nervous at all. Not even when I asked if she would roam Times Square during rush hour for our shoot, which nobody wants to do. Her response was always upbeat, can-do, and focused entirely on a message of advocacy.
“I’m all set with a flight to NYC and will be in town,” she wrote. “…I’m thrilled we have this opportunity to send a disability rights based message.”
The crew and I would become embarrassed by our low expectations. We’d learn that Haben’s crusade goes well beyond satiating curiosities or indulging the tired trope of the “heroic” disabled person. We’d also learn that yes, Haben is deaf, blind, and beyond impressive, and she lives a life as full as any.
Her story is remarkable. Haben’s mother, Saba, was an Eritrean refugee who, at age 16, took a dangerous two-week trek to Sudan during the violent Eritrea-Ethiopia war in 1983. With the help of a Catholic resettlement agency, Saba relocated to America. She met Haben’s father, an Ethiopian, in California. Neither of her parents is disabled.
Haben Girma was born deaf-blind in Oakland. Her older brother Mussie was also born deaf-blind, leading her to conclude that the disability is genetic – though she knows little else about it. Both siblings were educated in Oakland’s public school district where they learned braille, worked with adaptive technology, and gained travel skills. Mussie is now a tech advisor and disabilities advocate.
Haben attended Lewis & Clark College in Portland and became the first deaf-blind person to graduate from Harvard Law School in 2013. She is currently a civil rights attorney living in Berkeley.
She credits her mother for her resolve.
“I had access to many services that my mother didn’t have growing up,” she said during our interview. “But I’ve also had challenges that she hasn’t had to face. I’ve used a similar sense of pioneering, of making your way through the journey of life to find solutions and make things work.”
In person, Haben, 28, is stunningly beautiful and stylish. She has a poised stance and moves gracefully, possibly because she is an avid salsa dancer (she gets dance cues from touch and intuition). Her seeing-eye German shepherd dog Maxine is usually at her side: calm, cute, and protective of Haben.
“Confidence should come from within, not from a dog, or a computer, or other people,” said Haben, who has globe-trotted everywhere from China to Mali to Ethiopia. “Once I got confidence in traveling and going where I wanted to go myself, I applied for a guide dog.”
One can speak to Haben in a few ways. She hears certain high-pitched frequencies, so in quieter environments, people – women mostly – can get close to her and speak with success, though she finds it exhausting and unreliable. Using touch, she communicates through sign language, for those who know it. For dense conversation, however, Haben prefers that people type on a keyboard that’s connected to a digital braille device. Typing signals the braille, which pulses into Haben’s fingers. Email, text, and other communications are similar: everything is connected to screen-reading software, which signals the braille.
To her knowledge, Haben is the first to connect the braille device to a keyboard. She built this contraption with a friend, allowing real-time conversation with anyone she meets. Sometimes, she travels with an interpreter who handles the typing. To respond, Haben simply speaks, and it’s through her speech – which is clear, calm, well-honed, and always witty – that Haben truly owns the room.
“Helen Keller couldn’t go to Harvard, because Harvard was only for men,” she said. “It wasn’t because of her disability, it wasn’t because of her gender, it was because Harvard chose to exclude people. The barrier wasn’t disability – it was the community’s choice.”
(Helen Keller attended Radcliffe, the women’s counterpart to Harvard, in 1900.)
Over the past few years, Haben has built something of an international persona by speaking openly about deaf-blindness, while charming everyone in the process. She delivered a TED Talk, was crowned one of Forbes’ 30 under 30, and last year, she met with President Obama to discuss disability advocacy. Obama named her a White House Champion of Change, and gave her a hug for the world to see.
Haben has ambitious physical goals, and she often meets them. With the help of tandem instructors, she surfs, bikes, and dances. Next, she’s hoping to tackle improv comedy.
“I’ve contacted improv schools in San Francisco Bay area, and the response unfortunately has been ‘Well, we don’t want to discourage you but, unfortunately improv is very visual, and audial. So we’re not sure it would work,’” Haben recounted.
“I’m very busy and haven’t taken the time to find the perfect improv solution, but it’s something I’ve been thinking about and would love to explore further.”
Haben is refreshingly fearless, but of course we had to put forethought into this production that we weren't accustomed to. We had to research the seeing-eye dog policies in our office building and in New York City cabs, which are actually quite liberal. Haben could not use the braille device during meals, so we had to plan accordingly when it came to communication. Once, Maxine guided Haben in the wrong direction in Times Square, so I ran, fought the crowd to catch them and re-route them. There were no insurmountable problems, however. Haben never panicked nor offered any apologies when these issues arose. We were having fun, and moreover, we were doing our jobs. But the experience made me wonder how many organizations have chosen instead to pass on Haben, and those like her.
The IDEA law guarantees an education to every child, and the American Disabilities Act bans all discrimination against people with disabilities. Yet barriers are still pervasive and stifling. Unemployment rates for people with visual impairment alone are about 7 percentage points higher than for non-disabled people. More startlingly, 75 percent of working-age Americans with visual impairment alone are not even considered part of the labor force.
Haben’s friend Mary Fernandez, a World Blind Union delegate, detailed the many barriers in place for people with disabilities beginning in childhood, despite the law. They are forced to fight for braille textbooks and lumped into generic special education classes that don’t serve them. Outsiders simply assume they can’t accomplish basic things on their own.
“You can’t be average. You have to be very bright,” said Fernandez, who is blind. “You can’t just learn. We don’t have that luxury. Every step of the way we have to fight tooth and nail and be very persistent. Haben is persistent, and she’s particularly great at gaining visibility and saying, ‘Don’t forget I exist.’”
Haben bristles at the notion of one particular word.
“A lot of people with disabilities are tired of the word ‘inspirational.’ Some even take offense,” Haben said. “The overuse has dulled its meaning.”
It’s difficult not to marvel at Haben and the logistics of her daily life as a deaf-blind person. Yet that misses the point she’s trying to make. Haben, by simply living her life, proves that people with disabilities can accomplish just about anything if they have access. It is the legal and moral obligation of society to find solutions and be inclusive. She hopes that organizations will want to be inclusive, in fact.
“I teach people to see disability as an asset that can contribute to their organization,” she said. “I want people to see the story of disability driving innovation, inspiring new technologies, bringing people together and connecting everyone – not just being ‘inspirational.’”
Perhaps we should stop asking, “How the heck do you go to the store?” and start asking, “How do we make sure others with deaf-blindness can graduate from law school?” Only then, Haben’s revolution will be a little closer.