HABEN GIRMA AND OGE EGBUONU, IN CONVERSATION

For Haben Girma, author, disability justice advocate, and the first Deafblind graduate of Harvard Law School, disability is not a burden, it is an opportunity for innovation. “Disabled people sparked the creation of many of the technologies we use today, from vegetable peelers to email,” she writes in her memoir, Haben: The Deafblind Woman Who Conquered Harvard Law. Born in Oakland, California, Haben is the daughter of Eritrean and Ethiopian refugees, and has battled racism, ableism, and sexism throughout her life. Her activism serves as a beacon of hope and inclusivity for both disabled and nondisabled people. She has become one of the foremost voices in the fight to make the world more accessible and accepting for all. Filmmaker and artist Oge Egbuonu virtually sat down with Haben to discuss her work and legacy, her self-care routine during the pandemic, and how she forged her relationship with her guide dog Mylo.

How are you doing? In the midst of a pandemic, how are you cultivating self care?

I feel most alive when I’m moving. So, even though so much is happening online, I’m trying to move as much as possible. Sometimes that’s stretching and yoga indoors, and then, as much as I can, I like to go for walks outside. My guide dog, Mylo, also really loves walks, and insists on walks everyday. So that helps me make sure I get out and get some exercise.

I can attest to that. I have a puppy, Rumi, and I take her on daily walks, which helps me get out and just move my body. Because if not, I’m cramped up on my couch with a book in my hand.

Oh my goodness! Oge the Yogi on the couch!

I know. But you know, the reminders, as you said, of having to take Rumi on a walk also serve as daily reminders for myself to just get up and move.

Dogs are special that way. They bring so much joy to our lives. And I know the winter can be particularly difficult in terms of depression and isolation, and having a dog really helps to not only go outside to walk, but to remember to be present. To take a minute, scratch their ears, play indoors. It’s really helpful for staying present and joyful.

I’m a hundred percent agreeing with you on that. You’re talking about the rapport we have with our dogs, I would love for you to talk about how you built your rapport with Mylo. And what are the ways you continue to sustain that?

My first guide dog, Maxine, passed away due to cancer in 2018. And it was devastating. It’s not just a friend, but also a travel partner, a guide dog. So I went to The Seeing Eye, a guide dog school, and asked to be matched with another guide. And a few months later, I went to the school in New Jersey and trained with Mylo. He’s a German shepherd, and when we first met, we did not have a relationship. We did not trust each other. He would crash into things because he hadn’t been trained with me, and it takes time to build a relationship. To build trust. It took about three weeks to get the basic trust. We’ve been together for a few years now, and we have a really good relationship. It’s kind of similar to relationships with humans. You have to invest time and energy to build up that trust.

My disability has been an opportunity for innovation, but all disabilities, all challenges are an opportunity to innovate. If you can’t do something one way, find another way. When my parents first found out that I’m blind, they were very worried. How would she go to school? How would she get a job? And the doctor told them, she’ll still do all those things. She’ll just do it another way. If you arrive home one day and you can’t enter your front door, do you give up and abandon your home? No, you try a side door, you try a window, you call a locksmith. There are always alternative solutions. So disabilities, challenges, are opportunities for innovation.

This snippet of you saying that should be played on social media for the rest of 2021. Because I think it’s such a powerful reminder for us to tap into our limitless capabilities, right? You’ve left me quite speechless with that one. Thank you for sharing that.

You’re welcome. I’ve had my whole life to process and think about this. My life is very different from sighted, hearing people. But it feels normal because this is my life. It’s all I’ve known. So I’ve learned to create a bridge between myself and sighted, hearing people.

You published a memoir, Haben: The Deafblind Woman Who Conquered Harvard Law. Can you talk to me about the process—creatively and emotionally—for creating this book?

I’m a disability rights advocate. I’m always asking myself, what else can I do to advance disability justice? I did litigation for a while. I worked at a law firm for a few years. And again and again, I kept meeting company leaders, government leaders, who had no idea about ableism. So I kept asking myself, what else can I do? Stories are incredibly powerful. Stories influence culture. So I wanted to write a story that would help teach people about ableism. And there are lots of examples in my own life. I thought, what are the most engaging, funny, moving stories from my own life that could help teach people about ableism? So I collected those stories, wrote them down, and spent months editing. And that’s the book I created.

Can you talk to me about the intersectionality between being a Black disabled woman and the daughter of refugees?

My parents are from Eritrea and Ethiopia. There are significant numbers of people in Ethiopia and Eritrea who believe disability is a curse on the family and something to be ashamed about. My family learned to resist those assumptions, but it was emotionally exhausting to keep coming across that. It’s also present in American culture. There are a lot of people in the U.S. who feel disabled people should stay hidden and are a burden. And during the pandemic, there’s a lot of messaging that disabled lives don’t matter. That we should be the last to receive medical help, if at all. So that’s incredibly frustrating to experience those decisions and those words that often lead to harmful actions. And being the daughter of refugees from Eritrea and being Black in a society that’s incredibly racist here in the U.S., it’s a lot to live with.

I can only imagine. What does solidarity feel like for you?

Solidarity feels like people asking thoughtful questions. How can we help? And then following through with responses. So if you say you can help by doing X, Y, Z, they actually do the work so that the barriers are removed and disabled people are included. I also don’t want to be the only one who’s calling out ableism. I want more people, whether they’re disabled or not, to join the movement of calling out ableism. Ableism frequently intersects with racism. And ableist language is used by racists to put down groups of people. So anyone advocating for racial justice should also work to remove ableism.

If someone wanted to become an advocate against ableism, what is a book or article that would be a good introduction?

One book I love is called Disability Visibility. It’s an anthology of people with different disabilities, different backgrounds, and their experiences with ableism. My story is in the book. There are lots of other great stories in the book, and it’s a great introduction into disability advocacy. And if you’re interested in films, there’s Crip Camp.

My final question for you is, what do you want your legacy to be?

My hope, with my book and my work, is for more people to learn to identify ableism, and to join the movement in removing ableism. That’s what I hope.

Stay tuned to @Levis Instagram for "All Day With Haben Girma & Mylo" on April 28th, International Guide Dog Day.

For more information on Haben and to read her brief Disability Accessibility Guide, click HERE.