Episodes

Deaf-blind in the White House

The Be My Eyes Podcast
April 7, 2020

This week on the podcast, we’re sharing a very special interview from the 13 Letters Podcast with civil rights advocate Haben Girma.

'Fearless' is a word many would use to describe Haben Girma, the first deafblind graduate of Harvard Law School. A disability rights lawyer, memoir author, and public speaker, Haben has certainly pushed the boundaries of how society regards its deafblind citizens. Even with her many achievements, Haben would not consider herself fearless, but rather acknowledge fear as something critical in guiding one's life. She's met German Chancellor Angela Merkel, former U.S. President Barack Obama, and now we're lucky enough to sit down and talk with Haben Girma on this week's episode of 13 Letters. On it, we'll discuss how politics affect the disabled, the importance of dance, and why a little bit of fear can push us in the right direction.

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Episode Transcript

Will Butler:

Hi everyone. A quick note before the podcast gets started today. Here in the United States, Be My Eyes is participating in a massive survey of all blind and visually impaired people to try to figure out how we can best respond to your needs during Coronavirus and the COVID-19 outbreak. You can find all the information at Flatteninaccessibility.com . Please fill ou the survey when you can. It will only take about 20-30 minutes and it's a massive collaboration between many blindness organizations and will give us some real data about how we can help you. Flatten Inaccessibility.com. Thanks

Haben Girma:

... I came up with a system that pairs a braille computer with a standard keyboard. People type their end of the conversation and I voice my side of the conversation... It's much easier to choose to make your services accessible rather than waiting for a lawsuit...

Will Butler:

Haben Girma is probably one of the most well-known deaf-blind figures in society today. She gets compared all the time to Helen Keller, of course – but is that comparison really fair? Haben was the first deaf-blind person to graduate from Harvard Law School. She's an attorney in her own rite who has brought civil rights cases to federal court, and she's a public speaker and advocate for the rights of people with disabilities and accessibility around the world. Today we're sharing our interview between Haben, myself and my co-host on the 13 Letters podcast, Cordelia McGee-Tubb. If you like all the talk about accessibility and digital inclusion, please feel free to tune over to the 13 Letters podcast. You can find it by just searching 1-3--Letters on any of the main podcast apps. Enjoy the interview with Haben, and thanks for listening.

Will Butler:

We both really enjoyed reading your recent memoir or autobiography. Well, what would you call it, Haben? Is it a memoir? Is it an autobiography, or what do you call your book?

Haben Girma:

My book is a memoir. The main difference between memoir and autobiography is memoir is focused on a theme. The theme in my book is connection. How does someone who is deafblind, living in a sighted, hearing world, find connection? What are the tools we use? Autobiography would more strive to tell an objective story of a person's life.

Cordelia McGee-Tubb:

Yeah, I think at the last page of the book, it says, "This is a work of creative nonfiction." I really liked that phrase.

Haben Girma:

Yes. I want to engage readers. There are lots of linguistic tools we have to make people smile, laugh, feel engaged with the story. Memoir writers should feel like we can use those tools as well.

Will Butler:

So, Haben, for those who don't know you, you're unique in that you are the first deafblind person to graduate from Harvard Law School. Many have compared you, in some respects, to being an advocate in the way that Helen Keller was an advocate. I wonder what you think about that comparison being that it's the most obvious comparison that you often get?

Haben Girma:

I think that comparison is not fair to Helen Keller.

Will Butler:

Is she someone you look up to quite a bit?

Haben Girma:

So, there are many stories of Helen Keller. Some stories are very condescending and make her sound absolutely helpless. You have to actually read Helen's own words to get a sense of herself. When you learn about her story from her own words, then you can understand her strength, the hard work she did to develop her own skills and strategies, and then the courage to advocate for racial equality, woman's rights at a time where very few people have respect for them.

Cordelia McGee-Tubb:

Absolutely. Yeah. I think her fearlessness there is just amazing. I actually haven't read very much of Helen Keller's own writing. So I think I need to do that now. So, thank you for the reminder to read her own words.

Cordelia McGee-Tubb:

On the topic of fearlessness, I noticed that your book had a lot of moments where fearlessness was an essential theme. I wonder if you could speak a little bit about when fearlessness is an asset and when it can sometimes be a hindrance.

Haben Girma:

A lot of people call me fearless. I would not describe myself as fearless. I think fear is a critical tool to stay alive. If we didn't have fear, we would have very short lives.

Cordelia McGee-Tubb:

Yeah. That's so true. Yeah.

Will Butler:

Yeah. I'm thinking about a story of you and another blind student on a train tracks in Louisiana.

Haben Girma:

Exactly. There's a scene in my book where a friend and I are walking down the sidewalk. We're both blind, both using wave canes, both have orientation and mobility skills. As young adults, we were both distracted. We had other things on our mind besides traffic.

Haben Girma:

So, fear in that kind of situation would tell you, "Hey, pay attention. Traffic can hurt you." If you're fearless, you ignore all of those signals. That's when you end up getting hurt. At the very last second, I realized we were approaching train tracks. There were so many signals warning us. A parallel traffic had stopped. The train bells were alarming us. We could feel the vibrations under our feet of the approaching train. But because we were distracted, because we were teenagers, we were ignoring all of that, and being fearless and approaching the train.

Will Butler:

Yeah. A point well taken. Haben, you and I have known each other for a few years. But for those who have never met you, they may be surprised that a deafblind person speaks with such clarity. What are other misconceptions that the world has about people who are deafblind?

Haben Girma:

I want to talk about voice for a moment. Our society oppresses people who have different voices, people with accents, with speech impediments. In the deaf community, we feel this a lot. A lot of deaf kids feel pressured to speak in a certain way. A lot of deaf schools focus on oralism, on speaking, which takes valuable time away from students' math time or science or reading and writing. Time they could be learning is spent to try to speak like a hearing person, essentially. Then other schools teach deaf kids sign language, so that they can develop language skills that are most accessible to them. If they're visual, they're sighted deaf kids, they can see language through sign language. If one is deaf, blind and can't see sign language, they can feel it through tactile sign language.

Haben Girma:

So, it's really important that schools respect all the different ways we communicate, whether it's voice or sign language or text and writing. I learned some sign language when I was growing up. I have an older brother who's deafblind, and he's a fluent signer. I'm not a fluent signer. I have conversational skills. So I have all the basics. My preferred communication method is through written English. I came up with a system where I pair Braille computer with a standard keyboard. People type there ended the conversation. I voiced my side of the conversation. I have a rare type of hearing loss, that allows me to hear some high frequency. I learned to speak in a higher voice.

Will Butler:

Yeah. The method you used to communicate of typing via wireless keyboard, and then reading it on a Braille display, and then communicating orally back is fairly unique, or at least maybe was when you started doing it, so much so that, correct me, if I'm wrong, but you had to come up with it on your own, didn't you?

Haben Girma:

Yes. No one told me that I could do this. I really wanted a system that used Braille because using my sense of touch and using Braille is the easiest way for me to access information. The other deafblind people I talked to all encouraged me to use tactile sign language, that's a completely different language. So, if I rely on tactile sign language, I would have to switch back and forth from American Sign Language to English back to American Sign Language, it would create another linguistic barrier. So, I was searching for a system that would allow for Braille.

Haben Girma:

Then 2010, HumanWare, the tech company, released a Braille note that had Bluetooth support. That sparked the idea of using a Bluetooth keyboard paired with the BrailleNote. I started using that at Harvard Law School. Harvard is a very stressful place. At first, I was intimidated to be using this different communication system there. Conversation by conversation, I started meeting people who were open to typing. Lots of millennials are familiar with typing, email, texting, Facebook Messenger. So over time, I developed a circle of friends who were comfortable, connecting with me in this different communication system. It stopped feeling intimidated. It stopped feeling uncomfortable to go and approach someone new and hand them the keyboard.

Will Butler:

Yeah. What an incredible breakthrough. I think that in a lot of cases on your bio, your story begins at Harvard. But I wonder if we could just ask you a couple questions after reading your book about growing up in Oakland.

Haben Girma:

Go for it. What do you want to know about Oakland?

Will Butler:

Well, I think I became blind as a young adult, so I never lived with my parents. It was really fascinating for me to read the accounts of your interactions with your parents. I felt deeply imagining what that would have been like in my own situation. At times, your parents felt very protective, over protective, and in other times, they were portrayed as though they were really very open to letting you have freedom and pursue all of the dreams that you had. When you look back on it now, how do you see that in hindsight? How do you characterize that relationship with your parents?

Haben Girma:

It was complicated. So in the one hand, they did a great job encouraging me to do everything non-disabled kids do. They expected me to do chores at home. I tried to tell them, "Blind people can't do dishes." They weren't having any of that.

Will Butler:

So, the rumors are true?

Haben Girma:

The rumors are true. Yes. I was forced to learn to do the dishes. I actually heard that other parents of disabled kids will not have the child learn important independent living skills because they're afraid the child might get hurt in the kitchen, or who knows what disaster could happen with the vacuum cleaner. They just tell the kid, "No, no, no. It's not safe."

Cordelia McGee-Tubb:

Your book is full of all these stories of butchering meat, which is something that I'm still very scared of doing because I'm scared of knives, all the way to traveling abroad on your own. So, yeah, really cool stories from just going out and exploring, and being independent. Also around, growing up in Oakland, I'm wondering, I read about how you went to Enchanted Hills Camp, which is a magical place, I got to visit a few years back after the fires to help them rebuild. I'm wondering what was your favorite part of Enchanted Hills?

Haben Girma:

Enchanted Hills, for those who don't know, is a camp for the blind in Napa, ran by the LightHouse, and many kids who are blind go to schools where they're the only blind student, or maybe they're one of two or three. I attended mainstream public schools. There were other blind students, probably, blind minority. Camp was an opportunity for one week each year, where our blindness was no big deal. At camp, it was cool to be blind. In that environment, you could focus on building up your other skills and developing community pride.

Haben Girma:

One of my stories in my book is about how I learned from a blind dance instructor that I can also do salsa, swing, merengue, and other ballroom dances. When I started out, I was shocked, how would a blind person teach a dance class? The counselors essentially said, "Go and try it and find out." It's a huge revelation for kids to meet successful confident blind adults and learn from them. Camp was an opportunity for us to do them.

Will Butler:

I wonder, there's so many cases we talked about, the communication via keyboard and Braille display. But in so many cases, you have had to innovate in order to find new ways to participate, socially, or professionally. Can you think of any other breakthroughs that you've had, things you've had to teach yourself how to overcome a barrier that maybe one point seemed insurmountable?

Haben Girma:

Let's go back to talking to dance. So, I started learning dance at Enchanted Hills Camp from a blind dance instructor. She showed me the movements, the steps. Then, when I went to college, I tried going to dances. I realized it's really hard to find someone to dance with when you can't see him. What do you do? Do you stop going to the dances? For a while, I wasn't sure what to do. Then I came up with a plan. My plan was when I dance with someone at the end of the dance, ask them, "Can you introduce me to another dancer?" Then they'll introduce me to a dancer, I'll have another dance. At the end of the dance, I'll ask, "Can you introduce me to another dancer?"

Cordelia McGee-Tubb:

That's awesome.

Will Butler:

That's pretty brilliant.

Cordelia McGee-Tubb:

Yeah. What do you love most about dance?

Haben Girma:

When I'm dancing, I don't feel disabled. I'm fully connected with the person I'm dancing with, with the music, with the whole community. I love having that moment, where I'm fully connected and I don't have to worry about accommodations or communication. It all flows easily. When I dance, I can't hear the beat in the music, I can't see any other dances, but I can feel the rhythm and beat through the hands and shoulders of the people I'm dancing with. I focus on partner dances because there's not a physical connection through hands and shoulders when you're dancing.

Will Butler:

Yeah. I think that it's so counterintuitive for many people who don't have a disability to imagine people with disabilities, just wanting to have fun and enjoy themselves the way that other people do. So, I think that the fact that you like to talk publicly and very openly about your love of dance is really important and instrumental to the whole conversation about accessibility.

Haben Girma:

We need to have all the same choices, open to non-disabled people. Dancing ballroom that just happens to be my interest. If the next blind person is interested in a shooting range, he should have the same options available to non-disabled people or horseback riding, or whatever that may be.

Will Butler:

So, this thing of asking your current dance partner to link you with the next dance partners, a perfect example of a social hack that you had to develop for yourself. When you got to college, I mean, it's obviously a big deal that you got your bachelor's, and then went to Harvard and got your law degree. You're the first person to do that. So, there were, obviously, less barriers for you than there were for someone like Helen Keller. I wonder if you could talk a little bit about for someone, like a deafblind student at Harvard, what are the barriers that still exist today that need to be lifted?

Haben Girma:

Let me clarify a few points, a little bit of history. Helen Keller wanted to go to Harvard, but they wouldn't admit her because back then Harvard only admitted men. They discriminated against her on the basis of her gender. Now, everybody knows that's ridiculous, and understands that, of course, women can go to college, or law school, or become doctors. But once upon a time, we lived in a world where it was assumed that women can do those things. We still have communities that believe that women can't do those things. Over time, the community at Harvard changed and open its doors to women, people of color, and people with disabilities.

Haben Girma:

I'm not the first deafblind person at Harvard. There have been other people at the different schools at Harvard. I was the first one at the law school. That meant I had to sit down with the administration of the law school and ask, "What are the challenges that I might encounter? What are the solutions we can come up with?" We didn't know all the answers. So, we have to [inaudible 00:22:46] try one thing, if it didn't work, try another thing, until we had systems that worked.

Will Butler:

Do you think because of your time there, that another student, showing up to complete the law program at Harvard, would have an easier time? Does everyone need to sit down whoever's helping with accommodations and approach their situation uniquely?

Haben Girma:

Everyone needs to sit down and approach their situation uniquely. It will be easier now because the school can't argue, "Deafblind students can't go to law school." We all know that's not true. But every deafblind student is different. There are different kinds of vision loss, different kinds of hearing loss. Some people might be Braille readers. Some people may be large print readers. So, you need to come up with a plan that works for the specific student.

Cordelia McGee-Tubb:

Yeah. I know with some folks who I've worked with who do not know many people with disabilities, they assume if they've met one person with a particular disability, they've met everyone, and they know everything about that disability. So, how do you ensure that these institutions know that just because this particular setup worked for Haben, it might not work for the next deafblind student at Harvard Law? How do we open people's minds to the fact that every single person is different and unique?

Haben Girma:

It's really important to treat each person as though they matter and belong. Don't start out the conversation by "Oh, you can't. This won't work." Think openly and brainstorm different solutions and strategies. I define accessibility and inclusion as an environment, where you provide information in multiple formats, so you can reach more people, large print, Braille. Be available for new technologies that will come up and create even more opportunities.

Will Butler:

When someone assumes though that the work you do is just in the service of a niche group of "people with disabilities," how do you respond to that?

Haben Girma:

People with disabilities are one of the largest minority groups. There are over a billion people with disabilities around the world. That's a significant market. You don't want to lose out on that market.

Cordelia McGee-Tubb:

Yeah. I think, I've heard you speak and I read the story in your book as well about how when you went to college, you worked with the college cafeteria to start publishing their menus online in an accessible digital format. I think that's such a good example of something that can scale to lots of different people because a lot of people, even if they don't have a disability, want to just check the menu online and see what's up, so they can make an informed decision about whether they want to go to the cafeteria or maybe go somewhere else. So, I think there are so many examples in your work and elsewhere in the accessibility space of accessibility advocacy, just ending up being a really net positive thing for everyone.

Haben Girma:

Absolutely. We call this the curb-cut effect. It started out here in the Bay Area, where Berkeley installed curb cuts on their sidewalks, so that wheelchair users can get on and off the sidewalk. Soon, they found the entire community was using those curb cuts. Parents, pushing strollers, travelers with the luggage, kids with skateboards. The whole community benefited. We see this with a lot of accessibility features. If you make your digital services accessible, you reach more people disabled and non disabled.

Cordelia McGee-Tubb:

I think the Bay Area has been a central location for disability rights advocacy for a long time starting, even before the curb cuts initiative, many decades ago. So, why do you think the Bay Area is pushing forward so much in this regard? I phrased that question [crosstalk 00:27:16].

Haben Girma:

[crosstalk 00:27:16] the culture of resistance and wanting to celebrate people who are different, the LGBT community, for example. All the different forms of oppression are connected. If one community is held back, the entire community is going to be held back. So, there has been more of an awareness here in the Bay Area and more efforts to help everyone feel included and welcome.

Will Butler:

I think we're going to take a quick break, but when we come back, we're going to talk about your return to the Bay Area after Harvard and the lawsuit you filed on your 26th birthday and some time you spent in the White House.

Will Butler:

Hi everyone. In case you got lost in the interview and forgot to go check it out, we are running a survey. We teamed up with our friends at Aira, ACB, NFB, AFB, APH – any acronym you can wrap your mind around – to run a study on the inordinate effects of COVID-19 on the blindness community. If you identify as blind, visually impaired or low vision, please go to flatteninaccessibility.com and fill out the survey. It will help us get real, hard data that will allow us to take real action. Thank you, and thank you for helping us spread the word about the survey. Now, back to the interview with Haben.

Will Butler:

I believe it was on your 26th birthday, Haben. You filed your first lawsuit. I believe it was your first lawsuit against Scribd, which now, today, advertises itself as the largest digital library, which is interesting because they weren't arguing that back when you filed a lawsuit. Why did you have to file that lawsuit?

Haben Girma:

I worked at a law firm representing the National Federation of the Blind. We had a legal team focused on increasing access for the blind community. We received complaints from blind readers and writers, saying that they couldn't access books on Scribd, which is a digital library. We reached out to Scribd, asking them to work with us to fix these issues. They didn't respond. We sent the letter again. No response.

Haben Girma:

So, finally, we sued them. Then they responded. Their response is that the Americans with disabilities only applies for physical places, not digital places, and therefore they didn't have to make their website accessible under the ADA. I disagreed, my team disagreed. So, we worked on a brief citing that the ADA does apply to online businesses. The judge, in that case, listened to both sides, and then decided that the ADA does apply to online businesses, which was an amazing victory for all the advocates working on digital accessibility. We want businesses to pay attention to accessibility and recognize it's important. It's much easier to choose to make your services accessible rather than waiting for a lawsuit.

Will Butler:

Yeah. That was a huge victory in the Second Circuit. Why would a company choose to fight a lawsuit that is trying to give people more access to its services rather than simply make their services accessible?

Haben Girma:

That's a question for Scribd. Why don't you interview them?

Cordelia McGee-Tubb:

That would be a juicy interview, I think.

Will Butler:

But you must have some ideas about why companies would resist accessibility in their product.

Haben Girma:

Some might argue, "Oh, it's too expensive." But they're not really looking at the actual costs and comparing that to what litigation would cost. You also bring in revenue, when you can expand the reach of your product. There are over a billion people with disabilities. Imagine expanding your market include the disability community, that would bring in more revenue.

Will Butler:

Despite victories like the one you had, there's still lingering question about whether the ADA applies to cyberspace. It hasn't been totally decided. You wrote a beautiful argument in your Scribd briefing for why the ADA does apply to the internet. Could you maybe tell us a bit about what you said in that briefing?

Haben Girma:

The Americans with Disabilities Act, [inaudible 00:32:04] to evolve with technology. Many of the best laws are written to change and evolve with technology. The ADA does not specifically mention the internet because at that time, the internet, as we know it today, didn't exist back then, but the language of the law says it should be broad and change and adapt as society and technology adapts.

Will Butler:

Yeah. I loved the linguistic argument you made in your briefing about... We use the language of space when we talk about the internet. We talk about windows and frames and wall, you write on someone's wall. These are the languages of physical space. I love that argument about why cyberspace is just an extension of the physical venues that we frequent. I thought that was really beautiful. I'm sure it was a contributing part to why you won the case.

Cordelia McGee-Tubb:

Yeah. Cyberspace literally has the word space right in there.

Will Butler:

Yeah.

Haben Girma:

Exactly.

Will Butler:

So, you-

Haben Girma:

We have this book of laws and email addresses.

Cordelia McGee-Tubb:

Yeah. It's interesting how much we try to recreate the physical world in digital spaces. It's unfortunate that in a place like the internet, where we don't have limits that we've carried a lot of the limitations of physical spaces into those digital spaces. So, thank you for making that argument.

Haben Girma:

Absolutely. Unfortunately, we need to keep making these arguments because there's still companies who insist they don't have to make their digital services accessible.

Cordelia McGee-Tubb:

On this topic of lawsuits, you had some really great accomplishments as a young civil rights attorney. Could you talk with us about why you decided to leave DRA and focus on advocacy?

Haben Girma:

My ultimate goal is to increase opportunities for people with disabilities. There are many ways to do that. Litigation is one way. In conjunction with that, we also need to educate and train and make sure that people make the right decisions, so they don't get sued.

Cordelia McGee-Tubb:

When you're talking with major organizations or even small organizations, government agencies, etc., what is the main takeaway that you want people to, to take from your conversations.

Haben Girma:

The main thing to remember that disability is not charity. A lot of organizations don't make it a top priority because they feel like it's optional charity work, but it's not. It's really critical to grow your business because it'll help you reach more people. Disability features and death benefiting disabled and non-disabled people. We know this from the curb-cut effect. Disability also drives innovation. There's so many studies that show difference drives innovation and makes it even stronger.

Will Butler:

When you go out to a company like... when you speak at a Salesforce or Dreamforce, one of these quite big events, how do you measure your success?

Haben Girma:

Do people remember the message after the event. That's when we need to measure success. I gave a talk at Salesforce, and apparently Cordelia remembers me.

Cordelia McGee-Tubb:

I could never forget you, Haben.

Haben Girma:

Thank you, Cordelia.

Cordelia McGee-Tubb:

Well, I think that's super important of a lot of folks at these large companies just haven't had exposure to the topics of accessibility, disability inclusion. So, just having someone come talk about these topics and talk with the same amount of passion that you bring to your public speaking, can make a really big impact. So, thank you for doing that.

Haben Girma:

Absolutely. So, some people have heard of disability accessibility, but there's no base attached to it, or if they just [inaudible 00:36:38] it through my talk, and finally, I have two disabilities, I touched on as many aspects of accessibility as possible. So, I talked about blind accessibility, but I also discussed physical accessibility for people with... will use wheelchairs or other mobility devices. Hearing accessibility. Let's have captions in our videos and transcripts for podcasts. Well, you have a transcript to this podcast?

Will Butler:

Absolutely. For all our listeners, that was the first question Haben asked me when I reached out to her. She said, "Will there be a transcript?"

Cordelia McGee-Tubb:

Absolutely. How could we not?

Will Butler:

We would not be a very good accessibility podcast if we didn't create transcripts.

Cordelia McGee-Tubb:

But yeah, we were also talking about this the other day of transcripts also enable... in a very selfish way, it enables better SEO for people to find these podcasts and hear these stories. So it's a net positive to have those, for sure.

Haben Girma:

Exactly. It makes it easier through keyword searches for disabled or non-disabled people to find their work. Again the curb-cut effect, if you implement accessibility, you make your service better overall.

Will Butler:

Haben, you've met so many high-profile people. You've met the PM of Canada. I believe, what, Angela Merkel maybe. I wanted to ask you about meeting President Obama in the White House. There's a famous photograph of President Obama typing to you on your keyboard. Obviously, that's a fun story to tell. It's a big moment for anyone. But what was the significance of that moment to you?

Haben Girma:

One point of clarification, I did not meet Justin Trudeau. He sent me a beautiful letter thanking me for my work and welcoming me to Canada.

Will Butler:

Thank you. Yes. We need a fact checker on these episodes.

Cordelia McGee-Tubb:

That's pretty cool that he sent you a letter. I want a letter from Justin Trudeau. [inaudible 00:38:54] photo of him. Anyway.

Haben Girma:

He sent me a Braille one, too. He sent the letter in print and Braille.

Will Butler:

How was his Braille? Was it grade two?

Haben Girma:

I was grade two Braille.

Will Butler:

Wow! He can do everything.

Haben Girma:

I'm not sure he Brailled it himself.

Will Butler:

Okay. We'll fact check that.

Cordelia McGee-Tubb:

Yeah. I like the idea that he did Braille it himself. Let's not fact check that.

Haben Girma:

Good plan. Good plan.

Will Butler:

Very good. So, tell me about Obama. What did that mean to you?

Haben Girma:

The interaction was incredibly warm and respectful. I felt it told our community, the disability community. The large American community, that disability is something to be respected and taken seriously rather than all the negative stories that we often see in the media. So, I was really grateful to have the opportunity to have a respectful conversation. He usually commend the kids by voice. But when we explained that I access information best through Braille, he graciously switched from voicing to typing, so I can access his words. So many other people would have said, "No, that's strange. I'm not going to do that. Have someone else type." But he graciously switched to typing so I could access his words. He was role modeling inclusion.

Will Butler:

That's beautiful. Didn't Joe Biden type to you as well?

Haben Girma:

Joe Biden did also type. We handed him the keyboard and he typed a message. Not hi, not how are you, but he typed, "I love you." I wasn't quite sure how to respond to that.

Will Butler:

That Seems weirdly Joe Biden.

Cordelia McGee-Tubb:

It seems very unbrand for him.

Haben Girma:

I think sometimes people are not sure what to say when they meet someone with a disability, especially if they're using a different communication system. So they might freeze up or say something not entirely communicating what they meant to communicate. I think he was trying to express appreciation and warmth through the best words he knew how.

Will Butler:

How about a Valerie Jarrett? You met her at that same time as well, right?

Haben Girma:

Yes, we met at the same event. She's a great typist. Actually when I met Obama, I told him, "I just had an amazing conversation with Valerie Jarrett. We're wondering if you can type as fast as she can." He said, "No. She types faster."

Cordelia McGee-Tubb:

It can just be a big typing competition in the Oval Office.

Will Butler:

Yeah. Maybe not now. Maybe not today's Oval Office.

Cordelia McGee-Tubb:

Yeah.

Haben Girma:

No. I think the one man today would do it on Twitter.

Cordelia McGee-Tubb:

Yeah.

Haben Girma:

And no spell checking either.

Cordelia McGee-Tubb:

Then all caps.

Will Butler:

Yeah. We wanted to ask you about that. I don't know if you want to get too political, but what changes have you seen in the disability rights space under the current administration? I think in general, how do changes in presidential administration affect the lives of people with disabilities in a real way?

Haben Girma:

Many government websites, like the US Department of Education and the White House, had accessibility on 88 pages. This administration has removed many of those documents, which is frustrating to the disability community.

Cordelia McGee-Tubb:

Absolutely.

Will Butler:

I can't believes that. That's incredible.

Cordelia McGee-Tubb:

What is the benefit of doing that? There is nothing.

Will Butler:

No. Yeah.

Cordelia McGee-Tubb:

That's unfathomable, but it's real life.

Will Butler:

I believe also like the DOJ was supposed to come out with some rules for web accessibility, and that's been indefinitely, not only just put on hold, but I believe they said they weren't going to come out with them. I'll have to fact check that, but definitely has slowed down rulemaking when it comes to accessibility from a real regulatory perspective.

Haben Girma:

There's also health care. Universal health care would benefit so many people, disabled and non-disabled. When people are struggling under multiple forms of oppression, racism, sexism, ableism, it's really hard to get the health care you need.

Cordelia McGee-Tubb:

Absolutely. Yeah. So, I saw on Instagram that your guide dog, Mylo, recently got a European pet passport. This has nothing to do with accessibility, but I'm just curious, where are you going to travel next.

Haben Girma:

So, the European Pet Passport is helpful if you're traveling to Europe a lot. The very first time you go there, it's not helpful because you need to be in Europe to get one. But if you're going to have repeated trips there, it makes the process smoother. Now, there's still issues. The last time I was in Heathrow, an agent was like, "You need to put your dog in the cage." I told them he flies with me in the cabin. They were insisting, "No. He needs to be in a cage."

Cordelia McGee-Tubb:

Oh, my gosh!

Haben Girma:

We went and talked to someone else. I think United justly confirmed that, yes, he can fly with me in the cabin. So, there's still issues. Our next trip is going to be to Australia and New Zealand. The European Pet Passport will not help me in Australia and New Zealand.

Will Butler:

Are there places in the world where you've had to not bring Mylo, or your previous dog Maxim, with you because of the way they treat service animals?

Haben Girma:

I only take my dog to places that have civil rights protections for the disabled assistance dogs. So Europe, Canada and Australia and New Zealand have great laws. I looked into Japan. They do have service dog protections in Japan. They even have a guide dog school in Japan. But when we talked to the airport, they were insistent that the dog would need to be quarantined, which would not work for my guide dog. It would prevent him from assisting me in the airport and throughout Japan. So, it's a combination of having service dog laws and also having an entry system that would respect the assistance dogs need to do their job. These countries are concerned of keeping their countries free from rabies and other dangerous diseases, which I support, but there's a safe way and non-disruptive way to do that.

Will Butler:

Yeah. We probably have a long way to go in educating and maintaining rights for service animals. Cordelia mentioned your Instagram. I wanted to maybe talk about that for a minute because despite the fact that you're deafblind, many of your audience are blind, you still are an avid... avidly post photos. Can you talk to us a little bit about what goes into your awesome image descriptions?

Haben Girma:

Images tell a story. When I write image descriptions, I want it to tell a story, so I don't need to describe every leaf on the tree. I need to describe what is the point, what story does this image communicate. So, I'm using my literary skills when I write this image descriptions. They become fun to read for blind people. Also, sighted people end up noticing details in the photo or learning new things about the place when they read the image descriptions.

Cordelia McGee-Tubb:

Yeah. I feel like my approach to image descriptions online is that they should match the mood of the platform. So, since Instagram is such a social and engaging, and usually people are posting exciting things there, I want my alternative text for my image descriptions to have the same feeling as the photo itself. I take a lot of inspiration from the way that you write your image descriptions because you've got a little bit of humor in there, too. It's great.

Haben Girma:

It usually matches the photo as well. I love giving people opportunities to smile and laugh, and I'll do that with my image descriptions and videos and photos. Something that not everyone does is including video descriptions. deafblind people need video descriptions to access the videos. That can be a summary of the visuals in the photo, or it could be a transcript, with all the dialogue in the video. I think most of my videos on Instagram do not have any dialogue. They're just [inaudible 00:49:04].

Haben Girma:

So, I think the last video I posted, I was feeling a 3D model of the Tower Bridge, and The Tower of London, and all the buildings in that area of London. So, it's feeling the model. I included an image description in the post. In the video description I added Haben feeling the model, and curious passers by are watching curiously.

Will Butler:

Yeah. People do that.

Cordelia McGee-Tubb:

Now that's interesting, too, because it's like you're describing an image, but it's not even really about the image, but about the tactile sensations. You're actually describing a tactile experience that's being expressed visually. It just goes back to that theme of multimodal communication.

Haben Girma:

One day we'll have technology that can communicate those tactile experiences, so that you can open it up and feel a model on your phone of the Tower Bridge.

Cordelia McGee-Tubb:

That'd be Awesome. Yeah. I've been reading up on large Braille tablets, but they're so expensive, that I'm hoping that that technology for having these easily rendered tactile experiences gets cheaper and more mainstream.

Haben Girma:

I do, too. It would make real, more affordable in many developing countries.

Will Butler:

I wonder, Haben, what do you think are the greatest technological advances that you're excited about in the coming several years or decades? What do you think will be the most valuable... Would it be tactile technology? Would it be greater access to digital information? Or do you have something specific that you're excited about?7

Haben Girma:

I'm excited for more tactile-based technology. Skin is one of our largest organs. There's so much potential for innovation at the intersection of technology and touch.

Will Butler:

We should explore that further also on the podcast. Maybe try to have some tactile guests, who specialize in tactile technology on. That'd be cool.

Cordelia McGee-Tubb:

Yeah. I feel like I remember people in the tech space are always like, "How do we make technology that accesses all of our senses?" There's this weird focus on this sense of smell, where people are like, "How do we make these experiences that you can smell?" But it's amazing that we haven't done more around tactile, given that we are such a tactile species. We experience so much through touch, whether that's our primary sense or not.

Haben Girma:

Yeah. A lot of our talk-up to this point has been focused on sight, on screens, that's branch out to all the other ways we connect with our world, from smell, to touch, to taste.

Will Butler:

Well, Haben, wrapping up here, what are your ambitions for the next year? What do you hope to accomplish? What are you excited about? What are you excited about doing this year?

Haben Girma:

Last year, I published my first book. It's called Haben: The Deafblind Woman Who Conquered Harvard Law. This year in 2020, we're releasing the paperback version, which comes out in August.

Will Butler:

Wonderful. Congratulations, by the way. Writing a book is quite a undertaking.

Cordelia McGee-Tubb:

Yeah.

Haben Girma:

It was a lot of work. It's not just writing down your experiences, but being able to step back and experience the story from the reader's perspective. How can you teach readers about ableism? At the end of the book, how do you lead readers into being advocates for inclusion? Learning to identify ableism and remove it from our world. So, my book is a series of fun, amusing stories that teach people to identify ableism and work through movement. At the back of the book, we even have an accessibility guide that teaches people, if you're inspired, here's what you can do right now to make your community more accessible.

Will Butler:

Yeah. I really appreciated that, getting to the end of the book and seeing that there were actionable lists of resources and things that people could do.

Cordelia McGee-Tubb:

Yeah. So, for everyone listening to this podcast or reading the transcript, you should definitely check out Haben's book. I'm not going to fangirl over you, but it's so beautifully written. Your stories really took me right there into the scene. I felt like I was there. To have those powerful personal stories that are so humorous and so honest, paired with the actual advice on how we can be a better society, a more inclusive society, it was just a really wonderful read.

Haben Girma:

Thanks, Cordelia. But it does mean who like audiobooks, there's also an audiobook, and they can read the audiobook.

Cordelia McGee-Tubb:

Cool.

Will Butler:

Awesome. Is that on Audible or BARD, or where can people find that?

Haben Girma:

It's on Audible and all the other places where you buy audiobooks.

Cordelia McGee-Tubb:

I have one random question that I just remembered I wanted to ask you before we wrap up, which is also about books, but about a different series of books. I read in one of the earlier chapters in your memoir, that you are a big Nancy Drew fan. I am also a big Nancy Drew fan. I am dying to know what your favorite mystery is.

Haben Girma:

Nancy Drew was one of my heroes when I was 12, years old. I haven't really read any Nancy Drew books since. I don't remember the different mysteries. So I couldn't name my favorite Nancy Drew book. What caught me is that she was solving mysteries. As a deafblind person at a sighted hearing school, everything was a mystery, whether [inaudible 00:55:57] assigned homework or not, I didn't see what was written on the board. I couldn't hear the instructor assigning homework in the back of the room. So, I had to investigate and find the instructor, get the homework from him, find the Braille version, do the homework, turn it in. So, there were these constant mysteries. I had to get good at solving them.

Will Butler:

Yeah. That's really interesting.

Cordelia McGee-Tubb:

Yeah. One of my friends, their kid, I just learned this, refers to question mark, says, "Mystery marks?" There's mystery all around us. So, I really like the way that you phrased that of we're constantly sleuthing.

Haben Girma:

Some people are not curious, and they miss out on fun facts around them. When you're curious, you learn more about your neighborhood, your world. That makes us better people overall.

Will Butler:

I think that's a good note to end on, if any, thank you so much, Haben, for joining us this morning and talking to us about accessibility, and your life, and what's to come for the accessible world.

Haben Girma:

You're very welcome. Thanks for having me on your show.

Will Butler:

If you're in the United States and you identify as any type of visually impaired, please go to flatteninaccessibility.com and fill out the survey. It should only take you 20-30 minutes, and it will help us by getting real data about what our community needs in order to recover from the public health crisis going on right now. If you have more ideas for the Be My Eyes podcast please just email us at podcasts@bemyeyes.com. Thanks so much for listening as always and talk to you in a couple weeks.