On September 19, 2015 Alice Wong interviewed her friend Haben Girma at StoryCorps San Francisco for the Disability Visibility Project. Below are some condensed and edited excerpts from their conversation.
On accessible technology and communication
Alice: Haben, why don’t…for those who are listening to this recording explain the set up in terms of the tapping that a person might hear during this recording. Would you like to introduce your interpreter?
Haben: If you’re able to hear typing in the background, my friend Gordon Brynes is transcribing what Alice is saying, and he’s doing this on a wireless keyboard and it’s showing up on a digital braille display, and we’re using this communication method because I’m deafblind and can’t hear Alice. Gordon is typing and I’m reading as Alice is speaking. Thanks for asking us to share that Alice.
Alice: Yes, I figured that since this is an oral history …listeners may wonder, “Haben’s deafblind, how does this work?” [I] want to make sure that people can visualize that in this room you and I are together talking facilitated by humans and technology.
Haben: Humans and technology have a potential to create many possibilities when they work together and sometimes people fear technology replacing humans, but technologies, even the best translating apps, can’t facilitate cultural information. Many, many people have been providing me with communication facilitation over the years in so many different environments and we’ve used different technologies over the years as technology has evolved. The technology I’m using right now is a BrailleNote Apex made by Humanware combined with an Apple wireless keyboard and I hope in 2 years … in 5 years I’ll have an even better device combined with a fabulous human who facilitates human interactions to gain access to audio and visual information.
Alice: What do you see in the future in terms of better and more effective communication technologies for people who are deafblind?
Haben: It would be helpful to have more devices that give access to audio information. We have very, very basic speech to text technology right now, like Siri. I don’t think many deafblind individuals use this technology, but it would be helpful if programmers expanded that to create even better speech to text possibilities. Another feature some individuals use is captioning, whether on television or on online videos, and captioning presents visual text on a screen that’s helpful for some individuals who are deafblind and have enough vision to read the text on the screen, but there are others, such as myself, who don’t have that vision to see the text on the screen. If someone developed closed captioning that also presented that information on digital Braille, that would give the deafblind community greater access to audio content.
Alice: What do you think are some of the barriers or things that are preventing these technologies from really happening sooner?
Haben: I find that a lot of the times people just don’t know what the needs are of these various communities. A lot of programmers have never heard about screen readers. Screen readers are technologies that convert their applications on computers that convert graphical information into synthesized speech or output to digital Braille. A lot of programmers don’t know about this, so they don’t design applications that are compatible with screen readers, or individuals who develop software for the deaf community, such as captioning programs, don’t really know about what the blind community uses and don’t know to make their captioning programs also compatible with screen readers. If we could educate more programmers about the needs of the deafblind community, I think that would help ensure that we had greater access in the future.
On growing up disabled in an immigrant family
Alice: There’s one thing we both have in common and it’s that we’re both disabled people with immigrant parents. What do you think is unique about growing up disabled in an immigrant family?
Haben: I think most immigrant experiences are different because of the home culture from which your parents came from. My parents came from Eritrea and Ethiopia where there are very few opportunities for children with disabilities. When my parents came here, they were amazed by all of the opportunities available for my brother and I. My brother also has disabilities. He’s deafblind. His name is Mussie Gebre.
Going back to your question about the immigrant experience, I think one disadvantage of growing up with someone with a disability and coming from an immigrant background is not having immediate access to networks. There are many different networks, but different support networks that helps one succeed in education field or the employment field. When you come in as an immigrant you don’t have those networks set up, but if you grew up in the United States chances are you have parents and families with various networks that could help you when preparing for college or applying for jobs. Not always the case for every American obviously, but that’s probably one of the biggest differences between coming in as an immigrant versus being born to a family here…one major difference would be that family would have heard of Helen Keller and when I realized they had a child with a disability, could tap into those known networks, figures in the media, heroes like Helen Keller, and would have more ideas to aspire to. Coming in from Eritrean Ethiopia, we didn’t have access to any of those. Family didn’t know about Helen Keller, didn’t really know what opportunities exist, just barely knew what Braille was, and we had to all learn that together.
Alice: I’m sure they must be immensely proud of you and they probably think, you know … What do they think in terms of all that you’ve done so far in 27 years?
Haben: My family is very, very proud of me and I’m very lucky to have a very loving family. I want to add that even though we didn’t have any frameworks on what it means to be someone with a disability or how one can succeed with a disability, we did have a good story of survival and strength. My parents grew up amidst war between Ethiopia and Eritrean and they had to be survivors, especially my mom who grew up amidst that war.
When I was growing up I heard stories about being told not to speak your language when you’re in school. They could only speak the Ethiopian language. They were not allowed to speak the Eritrean language, Tigrinya. School was a place where you couldn’t show your true identity. The streets were a place of fear with soldiers. When my mother was about 15 she was part of a marching band and the Ethiopian soldiers told them that they must sing songs condemning Eritrean soldiers.
I heard these stories of survival and courage and standing up for your identity. Not specifically about disability, not really about deafblindness, but having those stories was very helpful. When I encountered disability related access barriers I could tap into those stories of strength and fighting for what you believe in and working hard even its 30 years to gain independence.
Alice: Yeah, absolutely. I’m also often humbled by the sacrifices my parents made for their kids in terms of having these opportunities and really giving up their own, a lot of things for themselves, that they would rather spend… their resources on their kids. That to me really says a lot in terms of survival and also what you do to nurture and support people…even if you don’t have a huge knowledge about disability rights, it’s kind of all innate in terms of really taking the time and the care to nurture and support the people around you.
Honored as a White House Champion of Change, and the first Deafblind graduate of Harvard Law School, Haben Girma advocates for the civil rights of persons with disabilities. A celebrated speaker, she provided the introductory remarks for the 25th Anniversary of the ADA at the White House. Her TEDxBaltimore Talk has garnered over 175,000 views. Haben joined Disability Rights Advocates in 2013 as a Skadden Fellow, and became a Staff Attorney in 2015. She helped achieve a legal victory in National Federation of the Blind v. Scribd, the second case to hold that the ADA applies to e-commerce. She received her J.D. in 2013 from Harvard, and her B.A., magna cum laude, in 2010 from Lewis & Clark College. Haben lives in Berkeley, California.