Haben Girma On The Power Of Writing Our Own Story

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Jillian Curwin: Hi everyone. Welcome to always looking up the podcast for no one is overlooked and height is only a number, never a limit. Hosted by me Jillian Curwin. Each week I'll be having a conversation about what it is like to live in a world that is not necessarily designed for you.

In this week's episode, I sat down with Haben Girma. Haben is a disability rights advocate and the first deafblind graduate of Harvard Law School. She is the author of the memoir Haben: The Deafblind Woman Who Conquered Harvard Law. President Barack Obama named her a White House champion of change, and she's been honored by President Bill Clinton. Prime Minister Justin Trudeau and Chancellor Angela Merkel. We discussed turning our self-advocacy into advocacy for others, how humor can be a powerful asset and the power of writing our own story. Let's get into it.

Hi, Haben.

Haben Girma: Hello. Thanks for having me here.

Jillian Curwin: Thank you so much for coming on. I am so excited and so honored to be talking with you today.

Haben Girma: I want to add briefly about my communication because some people might hear a delay between when you speak and when I respond. And that's because I'm deafblind and I'm reading your words on a Braille display and they're being typed up on a keyboard. So if there's a delay in my response, it's because the typing is still coming through. Back to you.

Jillian Curwin: Thank you so much for that. And thank you for clearing that up. Yes. Why don't you start by telling my audience a little bit about yourself in your own words?

Haben Girma: So, you know, I'm deafblind. I like starting with that because it impacts communication. So it kind of sets the stage for understanding how we're communicating and engaging. I was born deaf, blind, and grew up in California, Oakland, California, attended mainstream public schools with disabled and non-disabled students. And I went to Lewis and Clark College and then Harvard Law School. And I'm an attorney advocating for disability access and inclusion. I'm also an author, and I wrote a book called Haben: the Deafblind Woman Who Conquered Harvard Law.

Jillian Curwin: Which is absolutely amazing. And we're going to get into it. But first, I want to ask, how do you define being disabled?

Haben Girma: So being disabled can be described in many different ways. I think the primary definition is that you have a medical condition that when put into certain kinds of environments, creates a mismatch, a conflict between your body, mind and the environment, and that creates a disability. So in essence, a disability is a conflict in a conversation between you and the the world around you.

Jillian Curwin: I found that very interesting as, particularly talking about it being a conversation, I've never heard disability described like that. I think sometimes people will say that our bodies necessarily aren't disabled and what makes us disabled is the society and the environment we live in. But it's interesting to hear you put it as a conversation between our bodies and the environment and the society.

Haben Girma: Yeah, because sometimes there's no conflict and the conversation is amazing and you feel like you fit right in to the environment. If the environment is built to fit people like you, our bodies and minds are welcomed into that environment or the society's culture in that environment is welcoming and treats us as though we fit right in. So yeah, when a disability occurs, it's because there's a conflict between our body minds and the environment and society around us.

Jillian Curwin: I agree. Did being disabled have any influence on you making the decision to pursue law as a career?

Haben Girma: You bet. So I encountered so many barriers and at first I was like, I guess this is what disabled people have to deal with. We just have to get used to inferior services. And over time, I was questioning that more. Do we really have to tolerate this? Can this change? And I realized the law, especially the ADA, is a way to spur change and I wanted to help create those changes. And that led me into into law. How do you advocate?

Jillian Curwin: I advocate on these platforms. I'm the daughter of two former prosecutors. So I like to say that I was raised by the best advocates, because I do think lawyers, part of their description are to be an advocate, whether it's for a victim, whether it's for a company, whether it's for a whole community. They are their advocate in that situation.

So from them, I learned how to advocate for myself and over time I wanted to turn my self-advocacy into advocating for both the little person and disabled communities, which is why in 2020 I started my blog. And then last year, in May of last year, I started the podcast to create a space for disabled voices to have their stories told. Because I feel like so often our stories aren't being told. And my younger self would have greatly appreciated to hear from disabled voices like you and from past guests. And so I'm hoping that I'm empowering the next generation to speak up and speak out and make their voices heard, and that they know that they're not alone.

Haben Girma: You're right that having our voices heard is incredibly powerful. So often our voices are not heard. And through through your work, your podcast and social media stories, you're helping to teach more people about disability. I'm really fascinated by the jump between self-advocacy and advocacy for the greater disability community. A lot of us start out with self advocacy, but not everyone actually makes the jump from advocating for people just like you, to advocating for all disabled people, including those who are different from us.

And there's still a lot of misunderstanding and even conflicts in access needs between people with different disabilities. I found for me when I was in college, I was participating in cross disability experiences. So for example, I went to Costa Rica with the disability rights exchange and our group had people with a variety of different disabilities. And in Costa Rica, we met disabled people with a variety of different disabilities. And we learned about different kinds of access needs and solutions. And it helped me build community across disabilities, which is incredibly powerful. But I know not everyone gets the experience of of having cross disability conversations and community. Do you remember how you made that jump? What what helped you do that switch?

Jillian Curwin: I think for me it was first seeing… there was one moment where I knew that I wanted to start the blog, which was seeing Sinéad Burke on the cover of British Vogue as one of 15 forces for change back in September 2019. And I have always had an interest in fashion, and seeing her being on the cover of such a major magazine kind of flipped the switch for me to say, okay, fashion is something I'm passionate about. I can't find clothes that fit me. I want to kind of be doing what she's doing.

And then with the pandemic hit shopping was not a part, no longer a priority. And I started talking about other issues and realized that there's so much that I don't know about the disabled community as a whole. I only know a small, no pun intended piece of it.

So I wanted to have conversations with people of different disabilities and to talk to allies in the to the community as well. And that really was like kind of where I felt definitely that turn happened between advocating just for myself and advocating for others. Was there a switch for you?

Haben Girma: Going to Costa Rica kind of created that gradual shift of of being more aware of access barriers for people who use wheelchairs. Access barriers for people with psychiatric disabilities. So that cross disability experience with with other disabled people really, really helped.

Jillian Curwin: For sure. And then what was the moment like? Was Harvard always on the agenda or was there a moment where you said, “I'm going to Harvard,” and what was that application process and then going to Harvard like for you?

Haben Girma: No, not at all. I did not grow up dreaming about law school. I never imagined myself as an attorney until like the year before, when I started applying for law schools and and studying for the LSAT. There aren't a lot of role models for deafblind people, so for the longest time, I had no idea what I'd do with my career. And I tried getting jobs and there was so much employment discrimination and low expectations by employers. So it was really tough.

Jillian Curwin: Was there did you ever feel like then you were pursuing law, pursuing Harvard to prove people wrong? Was that ever. Did that ever cross your mind?

Haben Girma: No, I did not do it for people. I did it for me. I chose to go to law school because I wanted to expand my knowledge and build up my skills. I think if I went just to prove people wrong, that's, that's giving people too much power. We should be doing things because we want to, not because we feel pressured to or are trying to fight social stereotypes.

Jillian Curwin: I love that response. And why ask is that I think, you know, myself personally, I think sometimes with the things I do, there is kind of an a mindset that I think is definitely more placed in my own head, that I have to prove that I belong or prove people's expectations of what it means to be a little person, of what it means to be disabled, wrong, and to kind of challenge those norms.

But I love that you are just like, no, I want to do this for me. And, you know, that is more powerful because again, like you said, you're not giving them that power.

Haben Girma: Right! They already have so much power. They have almost all the stories, all the media, all the jobs. We don't need to give nondisabled society more power over our selves. So if we were to prove society wrong or make it our mission to prove society wrong, we would devote all our waking time to society's expectations. So instead, I want to imagine what's an inclusive society? How do I carve out inclusive environments for myself where I can just be me and ask, What do I want? What makes me happy? Rather than What does society expect of me? And how do I fight society? 24/7.

Jillian Curwin: I love that. Do you consider yourself an inspiration? And as a follow up, do you want to be considered as an inspiration?

Haben Girma: It depends. It depends on if one is taking action with that powerful emotion of inspiration. So if someone calls me inspiring, I ask, What are you inspired to do? Take that emotion and take it all the way to action. A lot of people get stuck at the emotion they feel inspired, but don't do anything with it, which feels like a waste. So if one feels inspired? Excellent. Do something about it.

Jillian Curwin: I cannot agree more. What do you when people say then that they are inspired by you and you ask, well, what are you inspired? Like what answer are you hoping to receive? Is there an answer that you're hoping to receive?

Haben Girma: Everyone's different. It's an honor to spark a desire to take action. So what they do depends on their lived experiences and their expertise. If they're an architect, hopefully they're inspired to create buildings that are fully accessible to disabled people. If they're a programmer, hopefully they're inspired to build tech that's accessible for disabled people. So it really depends on their own lived experiences and expertise.

Jillian Curwin: Love that. Who do you consider that the people or the community that you're advocating for?

Haben Girma: Disabled people. Absolutely.

Jillian Curwin: And is there anything specific that you're addressing or is it just protecting their civil rights as a whole?

Haben Girma: Advancing disability justice. So removing ablest barriers. So that disabled people have access to health care, education, employment opportunities, opportunities for social connection, friendship, relationships, sports and recreation. All of that should be available.

Jillian Curwin: I agree. What accomplishment are you most proud of?

Haben Girma: I'm really, really happy with my book. It took a long time to write that book, and I wanted to write it as a way to teach people about ableism, the systemic discrimination against disabled people. And this book highlights fun, engaging stories from my own personal life that shows what it's like when ableism pops up in school, at a job interview, at the workplace. So I'm really, really pleased with the book. And again, it's called Haben: The Deafblind Woman Who Conquered Harvard Law.

A lot of people say to me, wow, you overcame your disability, and no. I'm still disabled. It was Harvard that had to overcome years of sexism and racism and ableism, and they still have more work to do. And the book is available as an e-book, hardcover, paperback. It's also an audiobook. And I read the audiobook.

Jillian Curwin: Wow. I will have links so, for people who want to get the book can access it. I do want to ask and I find, you know, myself, with telling my story, that sometimes I'm definitely a little trepidatious with sharing some parts of my story. Did you experience any trepidation when writing?

Haben Girma: Oh, this was not an autobiography. So the goal was not to share every detail from my birth to my present. The goal was to highlight how ableism comes up in in the lives of disabled people. By highlighting my own personal stories with ableism. So the chapters are all anecdotes that touch on ableism in some way.

Jillian Curwin: I love that, and I love that that's how you chose to tell your story and to talk and to really highlight, you know, and like you said, you didn't overcome your disability. Harvard had to overcome their systemic ableism and other prejudices that there's that a lot of other institutions haven't started to. And if they or they're making some progress and some have definitely made great strides.

So then my next question is what's next for you?

Haben Girma: Oh, that question. That question comes up a lot. And I feel like our society puts so much pressure on more, more, more. The next thing and the next thing and the next thing. And people rarely learn to appreciate the now and celebrate the present. What do we already have? Are we taking joy in the moments today? And that's really important to practice.

Jillian Curwin: That is so true. And I think that's something I struggle with, with staying in the now. I think, you know, like you said, I'm always trying to think of what's next. What do I have to do next? How do I expand my platforms? How do I reach a wider audience? How do I make a greater difference? And it is so important, like you said, to focus on the now and to reflect on what you're doing in the moment and to stay in it and to live in it and to really experience it.

Haben Girma: Exactly. So how are you going to enjoy today? What's something you're going to particularly take delight in today?

Jillian Curwin: The first is definitely this conversation with you and after, you know, usually I try to record the introduction right away and focus immediately on who can I get next? But to really, you know, with this conversation, really reflect on it and really, you know, think of how I can make a difference, you know, not just in the immediacy of what happens with this conversation, but really like just kind of celebrate the fact that I'm talking with you, that I'm hearing a part of your story and that other people are hearing a part of your story. So definitely to just kind of sit in that feeling.

Haben Girma: I love that. Also, I really appreciate that you publish transcripts with your podcast for Deaf and Deafblind People. Transcripts allow us to access podcasts, which otherwise we might not be able to hear. So thank thank you for doing that.

Jillian Curwin: You're most welcome. I am very proud that we are publishing the transcripts. My brother, who edits and produces the podcast, and I have found a way for me to make the episodes available. So, as new episodes come out, we are making sure to transcribe them and at the same time we are going back to transcribe past episodes. So that way episodes that haven't yet been transcribed will be available to people who who benefit from the transcriptions.

Haben Girma: Thanks brother! We appreciate that.

Jillian Curwin: He is the best. That is for sure.

I want to ask, as I said, that you are someone I look up to. I want to know who do you look up to?

Haben Girma: One of the there are so many amazing disabled activists. One I admire a lot is Maysoon Zayid. I particularly adore how she uses humor to get people to relate and understand disability justice and human rights.

Jillian Curwin: Humor is so important. I feel that you always have to find the positive and to be able to laugh. I think that is so important. So I love that.

Haben Girma: I do too, and I use a lot of humor in my book and stories to help people get past some of the disability awkwardness.

Jillian Curwin: For sure. I think it's so important and I think people don't necessarily, you know, when confronted with disability, they don't want to talk about it or are uncomfortable about it. And I think finding a way to find the humor in things also helps put people at ease and put them in a place where they're more willing to understand.

Haben Girma: Agreed. So is this a good spot for you to insert a joke?

Jillian Curwin: Absolutely. Go ahead.

Haben Girma: Not me! You. you were talking about humor give us a joke.

Jillian Curwin: I don't know if I have a good joke. I think, you know, I always say that when people are describing someone to me and they go, he's tall or they're tall. I always say I'm a bad judge of height because to me, every as a little person, everyone is tall. So, I never understand why people use that description. But I just I find it funny that, like, I'm just like everyone's tall to me, you know, even someone who'll say they're short, I'm like, well, to me, you're tall, you know, and stand tall.

Haben Girma: Well, there are other little people who are shorter than you right?

Jillian Curwin: That is true. Yes.

Haben Girma: But, yeah, that's that's another way that disability creates more opportunities for humor, because our situations are so unique. There are opportunities to come up with new connections that spark humor.

Jillian Curwin: Absolutely. The final serious question I ask is one that I have been told that is would not be necessarily allowed in a court of law, but it comes from my dad. So I wanted to ask you, are there any questions I have not asked that you would like to answer?

Haben Girma: I don't think so.

Jillian Curwin: That is an acceptable answer. So thank you so much. Where can people follow you?

Haben Girma: You can follow me on Instagram, Twitter, Facebook or LinkedIn and my username is habengirma. H-A-B-E-N-G-I-R-M-A

Jillian Curwin: Amazing. I will have links to all of her platforms in the show notes, so follow her if you aren't already. This has been an absolutely amazing conversation. Thank you so much. The final thing I do is an icebreaker. I just like to do it at the end because it's more fun that way. So I have five categories and I just want to hear your favorite in each one.

Haben Girma: Go for it.

Jillian Curwin: The first is your favorite book.

Haben Girma: Can I say mine?

Jillian Curwin: Of course.

Haben Girma: All right. There we go. My favorite book is Haben: The Deafblind Woman Who Conquered Harvard Law.

Jillian Curwin: Love it. What is your favorite TV show?

Haben Girma: Oh, I don't actually watch TV. TV is inaccessible to me.

Jillian Curwin: I apologize for that. I will revise the question to ask what is your favorite form of entertainment?

Haben Girma: Reading.

Jillian Curwin: Love. If you had to have a second favorite book that's not your own, what would it be?

Haben Girma: That would feel disloyal to my book.

Jillian Curwin: Fair enough. Fair enough. Favorite drink?

Haben Girma: Tea!

Jillian Curwin: Same. What type of tea?

Haben Girma: I like herbal teas right now. I'm a big fan of Blueberry tea.

Jillian Curwin: Oh, I have never tried that. But I am going to find it because that sounds delicious.

Haben Girma: It's really good.

Jillian Curwin: I will let you know. I will find it, and then I will follow up with my reaction.

Haben Girma: Sounds like a plan.

Jillian Curwin: What is your favorite piece of advice you've ever given?

Haben Girma: If I were to give advice to my 14 year old self, I would tell her, “You're not a burden. Society might try to tell you that you're an inconvenience to the world. Don't believe that. Resist them and know you are powerful.”

Jillian Curwin: I love that. I love that you framed it as if you were talking to your younger self because that is so much of what I try to do with this platform is to talk to my younger self who definitely needed to hear from these voices and just hear these stories to know that they're not alone in this. So I love that you framed it that way.

Haben Girma: You're welcome.

Jillian Curwin: The last one is, what is your favorite piece of advice that you've ever received from someone else?

Haben Girma: Sometimes it's better to work smart rather than working hard.

Jillian Curwin: I agree, and that is a perfect note to end this conversation on. Haben, thank you so much. It has been a true pleasure talking with you. I do just have to ask one final, final thing, and that is just to remind my listeners in your most fierce voice possible, that height is just a number, not a limit.

Haben Girma: Height is just a number. Not a limit.

Jillian Curwin: Always Looking Up is hosted by Jillian Curwin and edited and produced by Ben Curwin. Please make sure to rate, review, and subscribe and follow on Spotify so that you never miss an episode. Follow me on Instagram at @jill_ilana and the podcast at @alwayslookingup.podcast for updates. And check out my blog, JillianIlana.com for more content about what it is like to be a little person in an average sized world. Thanks for listening. See you next week.

Follow Haben:

Instagram: @habengirma

Twitter: @HabenGirma

Facebook: Haben Girma

LinkedIn: Haben Girma

Learn More: Haben: The Deafblind Woman Who Conquered Harvard Law, by Haben Girma