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No Barriers Podcast Episode 66: Advocate for Change: Haben Girma



The first Deafblind person to graduate from Harvard Law School, Haben Girma advocates for equal opportunities for people with disabilities. President Obama named her a White House Champion of Change. She received the Helen Keller Achievement Award, and a spot on the Forbes 30 Under 30 list. President Bill Clinton, Prime Minister Justin Trudeau, and Chancellor Angela Merkel have all honored Haben. Haben believes disability is an opportunity for innovation and she travels the world teaching the benefits of choosing inclusion. She is also the author of the bestselling book, Haben: The Deafblind Woman Who Conquered Harvard Law.

Note:

This episode was recorded during our No Barriers Virtual Summit. 

Additional Resources:

Learn more about Haben: https://habengirma.com/

Watch her TED Talk

Check out her appearance on the Today Show

Purchase or learn more about her book

Follow Haben on Facebook, Twitter, or Instagram

YouTube Interviews:
https://youtu.be/iDXmyK-zq_M – Condensed version

»Hear an extended version of our interview with Haben here

 

 

 

 


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Episode Transcript

Haben : Remember that advocacy is not just about ourselves, but impacts our entire community. And when we take the time to advocate, it makes life better for those who come after us.

Eric : It's easy to talk about the successes, but what doesn't get talked about enough is the struggle. My name is Eric Weihenmayer. I've gotten the chance to ascend Mount Everest, to climb the tallest mountain in every continent, to kayak the Grand Canyon, and I happen to be blind. It's been a struggle to live what I call a no-barriers life. To define it, to push the parameters of what it means. And part of the equation is diving into the learning process and trying to illuminate the universal elements that exist along the way. And that unexplored terrain between those dark places we find ourselves in the summit exists a map. That map, that way forward is what we call no barriers.

Jeff : Haben: Girma is an American disability rights advocate and the first deaf-blind person to graduate from Harvard Law School. President Obama named her a White House champion of change. She's received the Helen Keller achievement award and secured a spot on the Forbes 30 under 30 list in 2016. She believes disability is an opportunity for innovation and travels the world teaching the benefits of choosing inclusion. Her memoir, Haben The Deaf-Blind Woman Who Conquered Harvard Law is a captivating read. A review from O Magazine states, "This autobiography by a millennial Helen Keller teems with grace and grit."

Eric : Everyone, welcome to our No Barriers podcast. This is Eric Weihenmayer, and this is Jeff Evans. We're also broadcasting at the summit, at No Barriers Summit. We're so excited. Some of you, maybe it's your first time listening to our podcast and we have an amazing guest today. Also, some of you may not know Jeff :, if it's your first time.Jeff : and I have known each other for a long time. And he's one of the few people on earth who knows exactly how to push my buttons and irritate me. But we also love each other like brothers and have put our lives in each other's hands, dozens of times. So he's a natural host for the podcast and it has been a huge part of No Barriers programs over the years. So thanks Jeff for being with us as well.

Jeff : Did just call me button pusher?

Eric : I will. Haben:, thank you for joining us. And I would like to ask you this first question, just to kind of get this out of the way, and that is being deaf-blind, how are you communicating with us today? Explain to everyone the cool technology that you're using.

Haben : Hi everyone. Thanks for having me on with the show. So for communication, I am using a real computer and keyboard. I'm deaf-blind and have limited vision and hearing. Most of our world is designed for people who can see and hear. Most of the world is designed for non disabled people. And disabled people, we have to be creative and thoughtful and come up with solutions as we resist ableism.

Haben : So as I was growing up, I was asking myself, "How can I participate in conversations? How can I be included in class and make friends?" And I looked back on my strengths. One of my strengths is my sense of touch. And I started reading braille in first grade, been reading real for about most of my life. In 2010, just when I was starting law school, the technology company called Humanware released a new BrailleNote that had Bluetooth. And that sparked the idea that maybe I could connect a Bluetooth keyboard with a braille computer and be able to communicate with people real time. I tested that. It was awkward and difficult at first. A lot of people are uncomfortable with difference, but eventually, I found more and more people who wanted to be inclusive and wanted to participate.

Haben : I'm going to hold up the device. So it's a small computer with a line of braille on the bottom. I run my fingers over the braille and it's connected to a keyboard. So as we speak during this conversation, someone's typing what

Eric :: and Button Pusher will be saying, and I'll be responding by voice.

Eric : Okay. So Haben:, I want to ask you this. How do you stay positive? Do you stay positive? Do you get really frustrated and down sometimes when you realize that you live, that we live in such a sighted and hearing world, and there's so much to do? And how do you pick the projects to attack because there are so many barriers out there?

Haben : Yeah, there are a lot of barriers, especially for us disabled people. And I do get exhausted. There is advocacy fatigue. One thing I do is to make sure I take breaks, make sure you get time to sleep. Make sure you got time to eat. There are a lot of people struggling for access to food, especially now during the pandemic. We need to do everything we can to take care of our basic needs. And also, community. Community is really helpful in dealing with advocacy fatigue. Having siblings who support you or button pushes who support you and act cute around you is always helpful in dealing with the frustrations that we encounter.

Haben : Sometimes it takes time to build up that community. It's tricky to find people who believe in you and can help you remove the barriers when you're too exhausted to remove the barriers yourself. So take the time to find those people, keep putting yourself out there until you have a community of people who support you. When I was growing up, disability organizations like summer camps for the blind, were places where I found a lot of friends who later, when I was frustrated with access barriers, could help cheer me on and empathize when I was struggling.

Eric : What were some of the access issues that you've struggled with? Maybe even starting in your early life?

Haben : In my book, one of the earliest scenes is regarding ableism in my schools. There is a scene where an instructor tells me that I'm failing class. And I tell the instructor, "I've been doing all the work. How could you say I'm feeling the class?" And the instructor is insistent that I was failing the class. I had a really good teacher, the blind, who sat down with me and asked questions. "Did you do all the assignments?" I told her, "Yes." "How are you getting the assignments? Where are you getting the assignments?" We did some investigation and found that the instructor was announcing homework from the back of the room where I couldn't hear him. And he was writing assignments on the board and I couldn't see the assignments.

Haben : So I was getting punished for assignments that were not accessible to me. That wasn't fair. We talked it over and I decided to take the responsibility of doing the extra work, to approach the instructor at the end of each class and ask, "Was there homework." This was in middle school. It's really, really hard for people in middle school to stand out, let alone advocate for themselves. That was really difficult for me. I pushed through it. I know this happens to a lot of kids with disabilities all over the world. And it's not fair. School should do the work to remove barriers, rather than putting the burden on students to resist and fight those barriers.

Eric : Well, you did learn to advocate for yourself. That was, I imagine, one of your first experiences advocating for yourself and the result was pretty good. I believe you were a valedictorian of your class, right?

Haben : High school, I graduated as valedictorian. Middle school, elementary school, let's not talk about my grades.

Eric : And also, I'm glad you mentioned your book, because we're here to celebrate your book,

Haben:, a blind deaf lawyer who conquered Harvard Law School. So we're going to talk more about your book and congratulations, because I know you just finished it recently.

Jeff :: And I'll add onto that. Was that process for you writing the book, would you rank it up there as one of the more challenging things that you've ever done or were the stories and the messages anecdotal enough for you and so close to your heart that they were easy to write?

Eric : Yeah, not too bad getting reviewed by Oprah. Nice job.

Haben : Oprah's magazine included a summary of my book, which was amazing. It was one of the top 10 picks for August. My book, I enjoyed the puzzle of taking personal experiences and then communicating them in a way, writing them down in a way that taught people about ableism. A lot of people don't know what that is. Ableism is the widespread belief that disabled people are inferior to non disabled people. We're not inferior, but then it's the belief that keeps getting spread around. So the stories I wrote, which are anecdotes in my life, everything from fighting a bull to making PB and J to climbing icebergs, Eric , you probably would enjoy climbing icebergs.

Eric : Yeah. I'm going to join you on your next iceberg climbing adventure. You've touched on that isolation. And I find that besides having a disability itself or multiple disabilities, you lose out on the conversation, on the visuals. Yeah so it is an isolating feeling, right? People, I don't think realize that that is the almost bigger problem than the disability itself, right?

Haben : I felt isolation in my own family. I feel like that happens a lot in disability communities. Often, we're the only one in our families with a disability. Some people around this struggle to understand. Sometimes they do get it. Sometimes they become disability advocates and help dismantle barriers. But other times they continue to struggle. Then there are other layers in other communities, layers of sexism and gendered expectations. Then there's also racism, lowered expectations for people who are black, people of color.

Haben : So as we try to build community, make friends form relationships, there's so many layers that push us to feeling isolated. And now we're in the pandemic and we're experiencing another form of isolation. The solution is a longterm thing, one friendship at a time and friendships take time. It's remembering to touch someone in check in, trying to make time to meet up for coffee or dancing. I'm a big dancer. I love swing and salsa. And many of my friends, I've met around dancing and dance activities.

Eric : You learned how to do salsa, I think at camp, right? So is that awkward being deaf-blind when you start trying to learn salsa because you can't see what other people are doing. And the instructor has to sort of know how to communicate with you in a way that it's clear. There are a million questions in your brain in terms of, "Am I doing it right?"

Haben : So there are different types of dances. There's dancing to perform for an audience. And that's very visual, and one can feel very self conscious about other people watching. But then there's also dancing for the connection, where it's not about showing off, but about feeling connected with another dance person. And that's the kind of dancing I really love. The dance classes I took, the dance instructor, my very first salsa class was with a blind dance instructor. She started by describing, and then after describing verbally, she allowed us to feel her feet and feel the different movements. When I dance with someone, partner dances were connected through our hands and shoulders. I actually can't hear the beat of the music, but I can feel the beat through people's hands and shoulders. And it's about that connection, that joy, that builds community.

Eric : And so you have learned to dance, do the salsa and to work a chainsaw, I read, something I've never done. I'd be terrified. But I have developed a lot of systems as a blind person, you have to survive by developing systems. So the title of your book, Conquering Harvard Law School, how the heck did you do that? Talk us through the day by day. What were the systems that you created to be able to keep up with a workload that most human beings would fail?

Haben : I went there. I did not know what the solutions would be. I did not know how to be a successful deaf-blind student, and Harvard didn't know how to provide access to a deaf-blind student. We engaged in an interactive process to figure out the solutions. Try one thing. If it doesn't work, try another thing until we had systems that worked. And I graduated in 2013.

Jeff : Your path has been from the very beginning, you're a daughter of refugees. You're a black woman. You're blind-deaf. You had every opportunity to tap out and say, "This is too much." At what point did it become, I think, what sounds to be like an absolute mission for you to take your story and your path and share it with the world?

Haben : So when I was in high school, I learned about a nonprofit organization called buildOn that builds schools around the world. And I told my parents, "I want to do this. I want to help build a school in Mali, West Africa." And my parents told me, "No, it's too dangerous. You're not going." And I did the dishes. I did chores. I told them, "I am working really hard. I really want to make a difference, not just here at home, but around the world." And they said, "No, it's dangerous. You're not allowed to go." They asked me, "How are you going to build a school if you can't see?" And I told them, "With bricks, with shovels, the non-disabled students also don't know how to build a school. We'll learn together." My parents still said, "No." They did not believe that I understood my abilities because I was a disabled teenager.

Haben : I thought maybe they would believe the message coming from a non-disabled adult. So I had the program manager sit down with my parents and talk and address all their concerns. Malaria, kidnapping, all these overblown dramatic, imagine fears that technically, yes could happen. But if we were to overwhelm ourselves with all of the potential barriers in the world, we'd never leave our homes. Finally, after talking to the program manager, they agreed let me go. I went to Mali, helped build a school, basically building the school, so shoveling, making bricks under the Saharan sun. When I came back, my parents had more respect for my abilities.

Eric : One of the stories that really impacted me personally, was you get into Harvard and you're in the cafeteria and you have no way to know, even what you're eating. I read that you bring it back to your table and that's when you discover what you're going to eat. So you don't even have a choice of what to eat. This power of choice, that was a very powerful part of your story. And what did you go about doing to change that?

Haben : I tolerated the situation and my college cafeteria, for several months, it was a print menu for sighted students. Sighted students could read the options and then go to their station of choice. I asked the manager to provide a braille menu, post it online, email it to me. I have assistive technology that allows me to use emails and websites, but the manager said, "We're very busy. They have over a thousand students and don't have time to do special things for students with special needs." Just to be clear, eating is not a special need. Everyone needs to eat. I did research then went back to the manager and explained the Americans with Disabilities Act prohibits discrimination against students with disabilities. If you don't provide access to the venue, I'm going to take legal action. I had no idea how to do that. I was just 19. I couldn't afford a lawyer.

Haben : Now I know there are nonprofit legal centers that help students with disabilities. But back then, I didn't know that. All I knew is I had to try. I had to do something. When I advocate, it helps all the students, all the people who come after me. That's when I decided to become an advocate for the disability community and I looked law schools. Later, went to law school study, and now I work as an advocate. Disability supports innovation and it actually sparks innovation too. Throughout our history, we have seen many examples where disabled people sparked the creation of technologies that benefit all of us. Before the internet existed as we know it today, deaf people struggled to communicate long distance.

Haben : Finserv developed one of the earliest email protocols. Through email, deaf people can communicate long distance. So when you do something based on disability, when you address the disability challenge, you could end up creating the next big thing, like email.

Jeff : You may not be able to change the world in one fell swoop, but your impact on your world, your universe in front of you has lasting effects. The things that,

Haben:, you are doing, and you have done in your life, you're impacting greatly one person at a time. And really, if you break it down fundamentally, that's all we can do.

Haben : The ADA, Americans with Disabilities Act came out in 1990, and 30 years later, we still have widespread employment discrimination. We still have violence against people with disabilities, especially disabled people of color.

Eric : So as a foundation then, what does inclusion look like? In general, but also for you personally, because when people use the word "inclusion," it's one of those words that everyone has a different thought process and meaning behind it.

Haben : We need to expand our awareness to include people who are different from ourselves, because that's what we ask non-disabled. People think about people different from yourselves, learn about all the different access barriers.

Eric : What's your mindset around humor and sort of the crazy things that happen to us as folks with disabilities?

Haben : Whenever there is tension, humor and laughter is an opportunity to release the tension.

Jeff :: Especially during this time of COVID when things are locked down, how do you have fun? What are the things you do to entertain yourself?

Haben : So during the pandemic, I've been baking more than usual, and usual for me is maybe once every three years. For anyone, disabled or non-disabled, the first time you do something, you're going to be slower and clumsier at it. You get better at it and faster at it through practice. So disabled friends, disabled people need friends and family members who give us the space to learn and develop skills. That said, disabled people should also have the agency to decide, "I would like assistance with this activity," and saying, "Hey, can I have sighted assistance," or, "mobility assistance." That's our choice. We as individuals can do a lot of work to remove barriers out of our way, but we also need communities, institutions like schools, employers to also do the work, to remove barriers out of our way.

Eric : What is the one thing, or maybe a couple things that you really want to attack in society right now, 2020?

Haben : The main thing I want people to understand is disabled people are talented and competent. So many employers ignore us. We could have PhDs, Master's degrees and employers still assume we're incompetent. When I was in Alaska, the place where I was climbing icebergs, I applied for lots of different jobs and employers kept turning me down. I had an amazing resume. This was back when I was in college and I graduated high school valedictorian, great grades in college, volunteered, and that was all in my resume. And employers, as soon as they found out that I have a disability, would say, "No, not a good fit. We're full," and all kinds of other excuses. I eventually found an employer who believed disabled people are talented and decided to give me a chance. I want a future where disabled people are not underemployed, where we have equal employment opportunities.

Eric : I love that. That's another reason why we're here today,Haben, because this community of no barriers comprises, not just people with various challenges, but business leaders, people who are trying to grow organizations and enterprises. And so what I'm hearing you say is you got to give people a chance. Give them a chance to prove themselves because otherwise it's a catch 22. If you don't have the chance to prove yourself, there's a door closed in your face before you even try. It's wonderful to have you as an advocate for so many people, just busting open doors.

Jeff : You're obviously an asset and an ally to many people that those little things that you're doing are big things and they multiply by an order of magnitude. And I commend you for all your effort and courage and your moxie.

Eric : And everyone definitely go out and get

Haben:'s book-

Jeff : Can't wait to read it.

Eric :

Haben::Deaf-Blind Woman Who Conquered Harvard Law School.

Haben : Thank you both. Thank you Eric and

Jeff :. This conversation is going to help a lot of people remember that advocacy is not just about ourselves, but impacts our entire community. And when we take the time to advocate, it makes life better for those who come after us. So here's to more advocacy, a more inclusive future and more laughter and humor in our lives.

Jeff : Here here. Well said.

Eric : Yeah, thank you.

Jeff : The production team behind this podcast includes senior producer, Pauline Schaffer, executive producer, Diedrich John, sound design, editing, and mixing by Tyler Cottman, graphics by Sam Davis and marketing support by Megan Lee and Carly Sandsmark. special, thanks to the Dan Ryan Band for our intro song, Guidance. And thanks to all of you for listening. We know that you've got a lot of choices about how you can spend your time and we appreciate you spending it with us. If you enjoy this podcast, we encourage you to subscribe to it, share it and give us a review. Show notes can be found at nobarrierspodcast.com.


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