On September 7, 2019, San Francisco’s Ferry Building is packed. People with service animals, wheelchairs, crutches, and all kinds of assistive devices find their way to a special event at the Book Passage, a community bookstore with a 40-year history in the Bay Area. Surrounded by ceiling-high shelves with colorful books, the small room fills up fast.
The reason this diverse audience mitigates to the bookstore is Haben Girma, a disability rights lawyer, writer, and public speaker. Haben also happens to be the first deaf-blind Harvard Law School graduate. She published her experience living in a world made for sighted, hearing people in her book ”Haben: The deafblind woman who conquered Harvard Law.” It’s a surprisingly hot day; the room is boiling. However, this doesn’t stop people from squeezing in to get a glance at Haben, who sits on a small bench in the front of the room, with her service dog lying below. She is wearing a black and white dress and holds a microphone in her right hand while resting her left hand on her braille notetaker.
When she starts speaking, the whole room falls silent, hanging on her every word. Haben is a force of nature. Today’s event is just one example of the way in which Haben’s public appearance motivates disability activists, lawyers, scholars, people with varying disabilities, chronically ill people, and many more to take action and follow in her footsteps.
Haben was born deaf-blind. When she was a child, she had some residual vision and hearing, which enabled her to learn how to speak. She uses this voice well. Ever since she went to school, she had to fight for access and against low expectations – battles which shaped the person she is today: A disability rights lawyer who advocates for equal opportunities for people with disabilities.
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Before I meet Haben in person, I ask her, via e-mail, about how to best introduce myself. She cannot hear or see me, and I certainly can’t just touch her without letting her know who I am first. The thought of treating one of the most important disability activists of this century disrespectfully due to my actions makes me a bit nervous.
Haben explains to me how we are going to communicate. It is not as different from talking to a seeing and hearing person. In fact, a part of the system Haben uses to communicate is her own invention. When she studied at Harvard, her search for a more accessible way to communicate with her peers led her to connect a computer keyboard to her braille notetaker, enabling Haben to read the letters a person types on the keyboard in real-time braille.
Haben lets me know that I should wait until she sits down, prepares her communication equipment, then type my introduction. In her book, she explains a situation where friends would commonly introduce themselves as “Hey, it’s me” after a few drinks. She would respond, “Me, who?” So I remind myself to properly state my name and the reason for our meeting.
A few days later, I arrive at a little coffee shop in Palo Alto – a short drive from San Francisco – where Haben currently lives. Accompanied by a friend and her guide dog, Mylo, we sit down outside. While Haben immediately puts her communication equipment on the table, Mylo gets comfortable under a chair, always close to Haben. A small, black device – her BrailleNote – sits on her lap. She moves the computer keyboard towards my side of the table. It’s a Sunday afternoon. The coffee shop is busy. Only two minutes after we start our interview, a woman approaches Haben and asks to talk to her. She is well-known here.
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I start typing. Ten words into our conversation, I notice my first typo, but Haben doesn’t stop. “Don’t worry about spelling or punctuation,” she says. Fast-paced, her left hand glides over her braille display, while her right hand picks up a cup of coffee. Before she invented the system connecting her notetaker to a regular keyboard, communicating with people was more complicated for her. “Some deaf-blind people communicate through voice. They have enough hearing to hear what’s going on around them. Some communicate with sign language. They have enough vision to see visual signs in front of them. Others might use tactile sign language, where they put their hands on top of someone else’s hands to feel the signs. There is also print on palms, where someone draws on someone’s palm,” Haben explains to me. However, some of those techniques might not work with non-disabled peers or teachers. The keyboard bridges this gap and makes conversations more accessible for Haben while also feeling quite natural for non-disabled communication partners, who are used to typing anyway.
Life hasn’t always been this accessible for Haben. In 2006, something as simple as eating what she wanted at the cafeteria became a major obstacle. Her Oregon college only provided print menus hanging on the wall in the cafeteria. While every other student was able to choose their lunch freely, Haben could not. She approached the company providing the food service at her school and asked for menus in braille, but the service provider refused and told her that someone should read the menu to her. However, Haben couldn’t hear anything in the noisy cafeteria, which she emphasized several times. They settled for what seemed to be a compromise: a daily e-mail, including the menu choices. But the e-mails didn’t arrive most of the time. “First, I just accepted it. I thought, maybe that’s just our lives as disabled people. But it was happening every day, several times a day. And it was extremely frustrating,” Haben says. An e-mail she received after another fruitless attempt to find a solution was a turning point in her life. The service provider told her she needed to understand that sending those menus via e-mail was a favor, not an obligation. They weren’t equipped, he said, to take care of ‘special needs’ students, and it was not reasonable for Haben to expect this to work. “Finally, I did some research and learned about the Americans with Disabilities Act (ADA) and realized this wasn’t a special thing they did for me. It was a legal requirement. So I reframed the problem as a civil rights issue rather than something nice to do. And that changed everything in the cafeteria. I suddenly had access to the menus. And it made me wonder how many disabled people aren’t advocating because they don’t know that they have civil rights. That’s when I started looking into law school.”
I type: This was a really brave thing to do. She looks at me with raised eyebrows and asks: “Why was this brave?” I type: “Because sometimes I am afraid of fighting for my rights because I fear the response. I have made some bad experiences in the past, which caused me some anxiety.” “Yes, there is a risk that when you stand up for yourself, you face retaliation. And that risk stops a lot of people from advocating for themselves. I think what really helps is to realize that when you stand up for yourself, you are not just helping yourself, you are helping other people. If you don’t do something, this barrier is going to continue,” Haben responds.
Fast forward 14 years past the incident at the cafeteria, many companies still have a long way to go in terms of accessibility of their services. “I have had airlines asking me to get off the plane because they thought my dog wasn’t a qualified service dog,” she remembers. A more common issue involves ride-sharing companies in the US, whose drivers often deny people with service dogs access to their car. “Sometimes, they talk to us, but more often, they just drive away.” And Haben is not an exception. This happens to many people with disabilities who either have a service dog or use mobility devices like a wheelchair or walker. Another painful situation was caused by an Airbnb host who, after Haben revealed she was traveling with a guide dog, canceled her reservation. “I reported the host to Airbnb. At first, they wouldn’t do anything, even though what he did was a violation of Airbnb policy and of the law,” Haben says. Only after she involved the media did Airbnb punish the host with a 30-day removal from their site.
Today, Haben teaches companies about inclusion and accessibility. “When you design for accessibility, it makes your whole service better,” she states. “When you add transcripts and captions to a video, more text is associated with the video, which leads to search engine optimization. More people will find your content through keyword searches. That makes your content easier to find for disabled and non-disabled people, which helps you, the media creator, grow your audience. And that is just one example.” Haben gives keynote speeches for companies such as Apple, as well as lectures at universities, libraries, and many other events. “My main focus is increasing digital accessibility, but I would love to see access across the board: Services, education, employment,” Haben says.check this out
Employment is a complex topic for many people with disabilities who, despite bringing many valuable skills to the table, still face high unemployment rates in the US. “When you live with a disability in a world filled with barriers, then you are forced to come up with new solutions so that you can have access to the environment. And those problem-solving skills are an asset to employers. So disabled people may have more innovation skills and problem-solving skills,” Haben illustrates. Haben herself has experienced people doubting her competence, or not expecting someone who is blind to be successful at all. But she continues to prove those people wrong.
Being 31 years old today, Haben can look back at receiving the Helen Keller Achievement Award and having been honored by many world leaders, including German chancellor Angela Merkel, Canadian Prime Minister Justin Trudeau, and former US-President Barack Obama, who, Haben let me know, did not make any spelling mistakes when using the keyboard to talk to her. Overall, Haben was invited to the White House three times. In 2010, she celebrated the 20th anniversary of the ADA with then-President Obama. In 2013, former President Obama recognized her and other activists as ‘White House Champions of Change,’ and in 2015, Haben introduced the president and vice president at an event to celebrate the 25th anniversary of the ADA.
I asked her where she will be in ten years. “I have no idea,” Haben says, “but my goal is to continue to increase access for the disabled. That can happen in many different forms, and I am open to new things.” If the crowd at San Francisco Ferry Building gets a say in this, they already have an idea. Jokingly, but with a serious undertone, a person in the audience suggests that Haben should run for president sometime, a statement met by applause from the whole audience. Who knows if #HabenforPresident will become more than a Twitter hashtag someday?
Haben surfs, teased a bull as a child, climbed an iceberg as a young adult, and traveled to Mali to build a school. So I want to know if there is anything she can’t or won’t do? She responds: “They used to say blind people can’t climb Mount Everest, but a blind man climbed Mount Everest. They used to say blind people can’t drive cars, but we are going to have self-driving cars very soon. So technically, no, there isn’t anything we cannot do.”
Haben did not overcome her disability, nor does she have the access she and every other person with a disability deserves. Nevertheless, she found innovative solutions to work around some of those access barriers, and by using her education and voice, she is helping to create a world in which inclusion isn’t seen as something special or as she said “nice to do,” but as a benefit for all of us: people with or without disabilities.
Find out more about Haben on her official website.
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By Karina Ulrike Sturm.
