09:13, December 17 72 0 theguardian.com

2019-12-17 09:13:03
Haben Girma: My disability has been an opportunity for innovation

The cafeteria menu was only available in print when 19-year-old Haben Girma started at Lewis & Clark college in Portland, Oregon. “I asked the cafeteria manager to provide something that I as a deafblind student could access,” she says. “Blindness wasn’t the problem: the format was the problem.” But she says the manager refused, because the cafeteria was too busy. It had a massive impact on her life. “For the first few months I tolerated eating food without knowing what it was and told myself that at least I was being fed. It was frustrating, especially as a vegetarian.”

Girma researched her rights. “Eventually I was able to tell the manager that the Americans with Disabilities Act gave me the right to an accessible menu. The manager started emailing me the choices, immediately.” Another blind student arrived the following year to find an accessible menu.

The manager and Girma, now 31, learned valuable lessons. The cafeteria management learned not to ignore the rights of disabled people. She learned that advocating for her own rights benefited everyone, not just herself. The experience set her on course to become a leading disability rights advocate, lawyer and author.

When we meet, Girma’s assistant, Gordon Byrnes, types a message into a wireless keyboard connected to a device that translates it into a braille display so that I can interview her. Girma developed the combination of keyboard and braille describer herself in 2010, when she became Harvard law school’s first deafblind student. She reads the braille and replies in a high-pitch speaking tone. Girma is clear that she identifies and is accepted as deafblind, a specific condition, where the loss of sight and hearing means mobility and communication are significantly affected. “I was lucky enough to be [growing up] in a place where disability rights were celebrated, the Bay area of California,” she says. “The classes were integrated between disabled and non-disabled students, and the materials were available in braille. I learned that we can work together.”

Now 31, Girma goes everywhere with a three-year-old alsatian called Mylo, who is trained to help disabled people. But the host of the accommodation she booked in London refused to let her stay, because he wouldn’t allow Girma to bring her dog. She complained and Airbnb suspended the host. But Girma doesn’t think this is good enough. “It’s a fairly light slap on the wrist,” she says.

“In the US, we have a lot of non-profit organisations and advocates enforcing the ADA. Success against one company sends out a message to others. The US is also one of the most litigious countries, which has its downsides but does mean individual rights tend to be enforced,” she says. “I understand there are problems enforcing the law in the UK.”

For Girma, educating people is as important as enforcing rights. She says that many people don’t appreciate how interdependent we all are or that a simple sense such as touch is, for example, so important. It enables her to read, feel music and enjoy the beauty of surfing in the sea. Technology is also crucial. “We can learn to develop technology and set up structures to ensure that everyone has access [to be able to fully engage in society],” Girma says. Any one of us can become disabled, she points out, and there are 1.3 billion disabled people worldwide. She stresses that they can make a beneficial contribution to companies and to society and offer a valuable market for businesses. “Disabled people cannot be ignored.”

That’s certainly true of Girma. In 2013, after graduating from Harvard and becoming a lawyer, she was named a White House champion of change by President Obama. The following year she was part of the team that fought a case for the National Federation of the Blind (NFB) in the US against the world’s largest digital library Scribd. Blind readers and writers wanted to be able to access its subscription service’s content. Scribd’s attorney argued that the ADA only applied to physical, not digital, places. The judge ruled in favour of the NFB.

This year, she has published her memoir, Haben: The Deafblind Woman Who Conquered Harvard Law, to critical acclaim and last month she made her first speaking tour of the UK. The book is the incredible story about the journey of a daughter of African refugees – her mother is Eritrean, from where she gets her name Haben, which means pride, and her father is Ethiopian – who both fled the 30-year war between their two countries. She has a disability that many would describe as life-limiting but that she defines as “an opportunity for innovation”.

Girma captivated a large audience, including a deafblind trainee doctor, at a Society for Computers and Law event in London last month, with her light touch and humour. Her talk is punctuated by slides showing her surfing, dancing and accompanied by her adored dog. The SCL is a charity that campaigns for better technology use and training in the law and she has given other talks for them at the Oxford Faculty of Law, Rhodes House, and at TechShare Pro in London.

“Stories influence the organisations we design, the products we build, the futures we imagine for ourselves,” she tells the audience.

“As the daughter of refugees, and as a disabled black woman, lots of stories say my life doesn’t matter. I had to learn to resist those stories. If you face a challenge, it’s an opportunity to come up with new solutions. Disability drives innovation.”

Curriculum vitae

Age: 31.

Lives: San Francisco Bay Area, California.

Family: Single.

Education: Skyline High School in Oakland, California; Lewis & Clark College, Portland, Oregon (sociology/anthropology); Harvard Law School (law).

Career: 2019: published first book, Haben: The Deafblind Woman Who Conquered Harvard Law; 2015: wins court case for disability rights against Scribd; 2013-present: lawyer, disability rights advocate.

Interests: Dancing, surfing, writing, travelling.

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