Why is accessibility all about patience?

October 18, 2022

For the very special 100th episode of Here to Help, Chris' guest is Haben Girma. The first Deafblind person to graduate from Harvard Law School, Haben Girma is a human rights lawyer advancing disability justice. President Obama named her a White House Champion of Change. She received the Helen Keller Achievement Award, a spot on the Forbes 30 Under 30 list, and TIME100 Talks. The New York Times, Oprah Magazine, and TODAY Show featured her memoir, "Haben: The Deafblind Woman Who Conquered Harvard Law". And President Bill Clinton, Prime Minister Justin Trudeau, and Chancellor Angela Merkel have all honored Haben, who believes disability is an opportunity for innovation.

She travels the world teaching the benefits of choosing inclusion. Chris and Haben discuss the language of accessibility, how disability drives innovation and fear should not hold us back from making the world better. Come join Chris and Haben and help us mark this milestone of 100 episodes.

- Hello everyone. I am Chris Hyams, CEO of Indeed, and welcome to the next episode of "Here to Help". At Indeed, our mission is to help people get jobs. This is what gets us out of bed in the morning and what keeps us going all day. And what powers that mission is people. "Here to Help" is a look at how experience, strength, and hope inspires people to want to help others. Today is the 100th episode of "Here to Help" and to mark that milestone, we have a very special guest. The first DeafBlind person to graduate from Harvard Law School, Haben Girma is a human rights lawyer advancing disability justice. President Obama named her as a White House Champion of Change. She received the Helen Keller Achievement Award, a spot on the Forbes 30 Under 30 list, and TIME100 Talks. President Bill Clinton, Prime Minister Justin Trudeau, and Chancellor Angela Merkel have all honored Haben. The New York Times, Oprah Magazine, and Today Show featured her memoir, "Haben: The Deafblind Woman Who Conquered Harvard Law". Haben believes disability is an opportunity for innovation and she teaches organizations the importance of choosing inclusion. I am honored to have Haben as my guest today. Haben, thank you so much for joining me.

- Thanks for having me here.

- Well, let's start where we always start these conversations by checking in. How are you doing today?

- I'm doing well. I want to explain a little bit about communication. There may be a delay between when you speak and when I respond, and that's because of the communication system I'm using. So I'm going to hold it up. I'm using a braille computer that has braille along the bottom, and as you're speaking I have someone typing what's being said. So I'm reading it in braille and then responding by voice. A big part of accessibility is patience. People communicate in all sorts of ways: voicing, signing, using assistive computer devices, and there are still communities where if someone communicates in an alternative way, the community does not welcome that. And in employment, there are so many situations where someone who's deaf or has a communication disability is dismissed because it's assumed we can't communicate. So accessibility is patience and welcoming people in all the different ways we communicate. Back to you.

- I love that idea that accessibility is patience. Thank you so much for that Haben. And before we dive in to the story of your experience and how you got to be doing what you're doing today, and the importance of accessibility in employment and in all areas of the world, I want to talk a little bit about language. When we met last week, you talked about how language influences culture and how important it is to use language that is clear and direct. At the end of your book, there's a section, A Brief Disability Accessibility Guide, and you talk about different harmful messages to avoid. In particular, you talk about the difference between people first language, for example, saying people with disabilities compared to identity-first language saying disabled people. Can you talk about this importance of language?

- Absolutely. So historically, people first language was celebrated and the concept came about by people saying, don't see the disability, see the person, and concepts like "my disability doesn't define me." So there was an emphasis on overlooking the disability and person-first language stresses this is a person first before they're disabled. So for a long time, it was people with disabilities, students with disabilities, employees with disabilities. But more recently, advocates, especially advocates with disabilities are saying, "Wait a minute. It's 2022. Why do we have to keep reminding ourselves that disabled people are people?" We can say woman, men, but when it's disability where we are being forced to do these linguistic gymnastics to say people with disabilities, persons with disabilities, that's actually another form of stigma when you are using different language compared to the language you use for other different identity groups. So activists nowadays are saying, let's do identity-first language, which is taking pride in your disability. Blind person instead of person who is blind. It's shorter, more direct, and more similar to how we talk about other identity groups like gender or ethnicity. So those are the conversations happening in the disability community. There is debate, there's disagreement because we're not all the same. Just like among non-disabled people, disabled people are very diverse and have different opinions. So these are the conversations that have been happening. I personally ask people how do you want to identify? And then I will respect what that person chooses. So if a disabled person tells me, "I don't like the word disabled, use special needs or differently abled," then I'll do that for that person. We're all different and we deserve to be able to use the words we prefer for our lived experiences. So I'm sharing what's happening across the community, but ultimately ask each person how do you identify and then respect their choices.

- Thank you so much for that. I think it's incredibly helpful and important to recognize that no community is monolithic. I'd love to talk a bit about your work today. You are a lawyer, you're an advocate, a writer, and a speaker. How do you describe your work?

- My work is to advance opportunities for disabled people. And there are many ways to do that. Art can be a powerful way to advocate and increase awareness. So I do writing, I've written a book and I've also written several short pieces about various aspects of disability justice. Litigation is also another tool for change and advancing disability opportunities. When I graduated from law school, I went right into working at a law firm and using the Americans with Disabilities Act and other civil rights laws to advance opportunities for disabled people. Litigation is expensive and time consuming, and I would prefer to avoid litigation and have people choose to invest in accessibility because it helps you reach more people, it increases content discoverability, it drives innovation. So there are lots of excellent business reasons in addition to legal reasons for choosing to invest in accessibility. So I worked at a law firm for a while, but then I ended up switching and I left litigation work and now focus more on consulting and speaking and writing to advance opportunities for disabled people. Back to you.

- "Here to Help" is really all about how experience, strength, and hope inspires people to want to help others. Of course, you've written an entire memoir about this and we can't possibly cover all of it. I can hardly recommend to anyone who's listening who has not read Haben's memoir, please do so. And I want to take a brief moment to thank Ronnie Shack from our Access Indeed Inclusion Resource Group. I read a lot and I'm always asking people for recommendations. And earlier this year Ronnie told me that she had read your memoir cover to cover on her honeymoon and told me that I had to read it. I'm so glad that I did. And I'd like to talk about one story in the book. So much of your life growing up was focused around having to advocate for yourself when people didn't understand what types of accommodations you might need. But at some point, you made this shift to what you're doing today, which is really advocating for others. I would love to hear you tell the story about when you were attending Lewis and Clark College for your undergraduate studies and you had to ask for an accommodation in the cafeteria.

- I'm honored you read my book. Thank you for taking time to listen to it and read it. And I'm also grateful Ronnie chose to read my book during their honeymoon. Wow, I'm honored to have been part of your honeymoon. So advocacy, I was not born an advocate. I came to it slowly over time and a big part of that shift happened when I was in college. The cafeteria story you mentioned. So as a vegetarian, I need to know what the options are to eat. There were about six different stations at the cafeteria and the menu was in print. I can't read print and I couldn't hear what people were saying at the cafeteria. So I was stuck choosing stations at random. I'd wait in line, get a plate, find a table, try the food. There were some unpleasant surprises, and I thought maybe it doesn't have to be this way. Maybe I can have access to food information just like sighted people have access to food information. So I went to the cafeteria manager and I said, "I can't read print, but I can read braille. The Student Support Services has a braille embosser and they're happy to emboss the menu if you send them the menu, or if you posted online or email it to me in accessible formats, I can read it on my braille computer." The manager said they're very busy, they have over 1,000 students. They don't have time to do special things for students with special needs. Just to be clear, eating is not a special need, but I was stuck not having access to the menus because they chose it was too much work. They didn't have time. It was treated as something optional to do on your free time. And this went on for months. I told myself, just be grateful. Millions of people around the world struggle for food. Who was I to complain? My mom, when she was my age was a refugee in Sudan. Who was I to complain? Maybe this was a lesson that disabled students should get used to inferior services. This went on for months and I tried really hard to just deal with it and tolerate it. I talked to friends, I did research online, then I went back to the manager and said, "The Americans with Disabilities Act prohibits discrimination against students with disabilities. If you don't provide access to the menu, I'm going to take legal action." I had no idea how to do that. I was 19, I couldn't afford a lawyer. Now I know their nonprofit legal centers helping students with disabilities, but back then I didn't know that. All I knew is I had to try, I had to do something. The next day, the manager apologized and promised to make the menus accessible. They started emailing them on time in accessible formats so I could use my braille computer and read the menu. If it said station four, cheese tortellini, I could use my white cane and navigate all the way to station four. Life became delicious. The next year there was a new blind student at the college and he had immediate access to the menus. That taught me when I advocate even for seemingly small things like menus, it helps future students. I know there are a lot of so-called small barriers that many of us tolerate, barriers facing a woman, people of color, disabled people. When we take the time to address a small barrier, we build up the skills to master the larger obstacles. And I wanted to continue building up my advocacy skills, not just advocating for me, but advocating for the entire disability community. And I chose to go to law school to help build up my skills to be a better advocate. Back to you.

- Thank you for sharing that story. There are so many stories in the book that represent these really amazing turning points, but one that's particularly moving is the story from when you were freshly out of law school and you had the opportunity to represent the National Federation of the Blind in a lawsuit seeking to get the Digital Library of Scribd to make its services accessible. Can you talk a little bit about this case and what that experience was like for you.

- As a DeafBlind woman, words, books have been my lifeline to the world. Books are really, really important to me and I have been advocating for more access to books. Tech has helped increase access to books. Print books were really hard to access, but digital books, digital content starts out as ones and zeros and you can convert those to visuals, audios, tactile graphics, so many different options if you choose accessibility. And some digital libraries were choosing accessibility and some weren't. And when I was working at the law firm, I received complaints from blind readers who wanted to access books on Scribd. Scribd is a digital library. And we wrote to Scribd explaining blind readers want to read books on your library, but it's not accessible. Would you please fix it? And they wouldn't respond. And we sent the message again and they were still ignoring us. So we sued them, and finally they acknowledged us and they responded saying Scribd does not have to be accessible because they felt the Americans with Disabilities Act applied only to physical spaces, not digital virtual spaces. I disagreed, my team disagreed. And we wrote a brief explaining this to the judge and the judge heard both sides and how the Americans with Disabilities Act does in fact apply to virtual spaces. That was a huge victory for the disability community and especially for blind readers. After that, Scribd agreed to work with the National Federation of the Blind to make their library accessible and help more blind people gain access to books. So that was hugely rewarding and exciting to help increase access to books.

- Thank you. That really is an extraordinary story. And I'd like to take that opportunity now to shift a little. As Indeed, we spend our days thinking about how to help people get jobs, and I'd love to talk a little bit about what some of the barriers are that disabled people face in getting a job and in working. There's some powerful stories in your memoir about when you flew to Alaska for a summer job only to find out that they were not expecting to find a disabled person and told you that they thought they shouldn't have hired you. There's also a story that you tell about being at a job fair in law school where people came up to talk to you, but didn't seem to be interested in hiring you. Can you talk about some of the barriers that face disabled people in getting a job?

- The biggest barrier is ableism. Ableism; A-B-L-E-I-S-M is the concept, the practices and beliefs that say disabled people are inferior to non-disabled people. And ableism can be unintentional. It often is. Not thinking about disability access is part of ableism and we need to actively work to end ableism. So we're thinking about are our job descriptions inclusive and accessible? Are the digital tools we're using to hire accessible? How about the spaces where we hold the interviews? Are those accessible? So I was applying for lots of jobs in Alaska. That was the story in the book. And there were lots of summer job openings and I sent in applications and they were impressed with my grades, with my volunteer experiences. So they'd call me in for interviews, but as soon as they realized I'm disabled, they'd come up with excuses not to hire me. These were tactile jobs. They did not require sight. Washing dishes, folding laundry. My parents made sure I had lots of experience in this field. So I know you do not need sight to be able to wash dishes or fold laundry, but many of these employers assumed that a blind or DeafBlind person could not do these jobs. They didn't ask what alternative techniques do you use? How will you do the job? They just assumed and dismissed me. Those types of assumptions are ableism and it happens a lot. There's still a lot of people who think blind people can't use computers or sighted deaf people can't drive. So we need to be aware of the assumptions we're making. One excellent tool for employers and also employees is the job accommodation network. And the website for that is askjan.org. Askjan.org, it's an extensive resource for employers wondering about making the workplace more accessible and also disabled job applicants and employees who maybe are either new to their disability or want more tools and strategies for their disability. And that's one of many tools out there. If we can get past ableism and start asking questions, how do we make this accessible? What are the other ways we can communicate or wash dishes or code? Back to you.

- So one of the things that was really striking to me in reading your memoir is that you describe in really vivid detail what the experience is like of trying to do things like going to school that I think to most readers like myself would feel like as a DeafBlind person, this would be very scary. But then you have spent so much of your life doing other things that to me might sound scary. Like going off when you were young to Mali to help build a school or climbing icebergs in Alaska. I would love to hear your thoughts about fear and how your experience of having to overcome things that are scary, how you approach that and what that means to you in your day to day life.

- So some people call me fearless. I am not fearless. I think fear is a really helpful emotion in allowing your body to remind you, hey, this could be dangerous. I need to be careful in this situation. It doesn't mean that you ignore the activity entirely. It's a reminder to pause and reflect. How do I make sure I'm safe? How do I continue to explore my curiosity and keep growing? There are many things that scare other people that don't scare me. And I think a big part of that is I'm very comfortable with the unknown. I'm used to moving through the world that I can't see or hear. So when I was taking surfing lessons, the sighted people around me were stressing, "Be cautious when you're stepping in the water. We can't see what's under the water, so we can't really warn you what's down there. So be careful when you're stepping." And I'm thinking to myself, when I'm on land, I also can't see what's in front of me. So that fear is not relevant to me in the water. So I'm very comfortable with the unknown and I think that's a really important skill to have, whether you're disabled or non-disabled. Get used to putting yourself in uncomfortable situations and learn to master that discomfort. Be aware of what your boundaries are and also recognize that it's a balance for being safe and cautious. When I surf, I do wear helmets and I always make sure I'm with good people. So it's a balance of being aware of your safety and the signals your body is sending you with the message of fear and also learning to be comfortable with the unknown. Back to you.

- Thank you. That is a really amazing way to think about it. One of the things that jumped out at me in your book is that obviously you've had to work so hard yourself to get comfortable with the unknown at the same time, especially when you were growing up, you had to deal with fear of the unknown that others had about you, specifically your parents. There were things that you felt confident that you could tackle like traveling to Mali on your own, but your parents were afraid to let you go. Can you talk about how other people's fear can be a barrier for disabled people and how you have had to advocate to overcome the fear of others so you can have the opportunity to do the things that you want to do?

- Yeah, that is a skill that a lot of disabled people develop. A lot of people around us get nervous, awkward, fearful of every step we take or just going out into the world makes them nervous and uncomfortable. So we develop strategies for helping other people deal with their fear. One strategy is humor. A lot of disabled people use humor to dispel that awkwardness that non-disabled people feel around us. Their fear, their nervousness, humor is one way to help dispel that. And I use some humor throughout my book. I've noticed other disabled people also use it. I also want to point out it’s work. We should not have to make non-disabled people feel comfortable with our disabilities. Non-disabled people should trust us when we say, yes, we can go to Mali and help build a school, or yes, we can take surfing lessons. So it's extra work on the shoulders of disabled people to help non-disabled people feel comfortable with their fear of disability. This is another form of ableism, and I would love to ask people, we need more allies to help end ableism. We need more non-disabled people thinking about accessibility. Take the initiative to ask is my workplace accessible? Are my websites and digital tools accessible? Don't always leave that work on the shoulders of disabled people. That gets exhausting. We need more people engaged in this work of making our world more accessible. Back to you.

- One of the things that comes out very clearly in the book is all of the various tools and technologies and support systems that you take advantage of to help make the world more accessible. Now, among those, one of the most important to you is having a guide dog. And in your book, the relationship between you and your first guide dog, Maxine is so beautiful. I'd love to hear just a little bit about what that relationship is like. It's very intimate and interdependent. You relied on Maxine, Maxine relied on you. How do you develop the level of trust with another creature to rely on them as you do and what was that relationship like for you?

- Yeah, that was quite the journey. So when I was younger, like a lot of people I thought guide dogs were like machines. You told them where you wanted to go and they took you there. But it turns out no, that's not the case. It's more of a partnership. So a guide dog does not know where you want to go. They're trained to move around obstacles to stop when there's oncoming traffic, stop at the end of the sidewalk, let you know when there's changes in elevation like stairs. So they tell you that information, but you need to know where you're going. You need to have directions, and you might get that through memorization. You might get that from an accessible GPS app. A lot of blind people use their smartphones to use GPS information to navigate the world. So you need to have that information of knowing where you're going and then working with the dog to maneuver around the obstacles directly in the path. And they're also emotional beings. So they need rest, they need play, they need love. And it's a really beautiful relationship and it took quite an investment of time and emotion to be able to have a strong trusting relationship. From day one, I was just a stranger, so I could give her a command on day one and she might listen, she might not listen. I was just a stranger. But over time, she learned to trust me and respect and love me. And in turn I learned to trust her more and know that she would listen to me. And if she's not, then there's a good reason she's not listening to me. So that took a lot of time. And you know it's the same for humans. If you want a good strong relationship with a human, you also have to invest time and emotion to build up trust with that person. So that's a chapter in my book about my first guide Maxine and learning to train with a guide dog. She passed away due to cancer and that was really, really hard to lose a partner. And I went back to the guide dog school and I trained with a new dog. His name is Milo and he is a very different dog, different personality. And we had to go through the whole process all over again of learning to trust each other, investing time and work and emotion. But it was absolutely worth it. And he's my buddy now. Back to you.

- Thank you for sharing that. I would love to take a little bit of time and talk about some of the things that allies can do. And one of the things that we talked about last week was the importance of making visual content accessible. And for anyone that has not seen it yet, I would recommend Haben is very active on Instagram and has an amazing Instagram. And I'd like to just read one of the descriptions. You obviously have descriptions of all of the photos that are posted. And this is a photo of you and Aubrie Lee, who is a Stanford trained engineer and artist and activist. And there's a photo and the description of the photo says, "Two women of color, and power, claiming space in the middle of a street. At left, Aubrie, dark braid cascading down her white jacket to her long pleated skirt, her hands folded elegantly and her expression neutral as she gazes from her black throne of a power wheelchair. At right, Haben, looking the showstopping model she is in her Levi's denim jacket and flowing pattern dress, her Seeing Eye dog's leash draped like a designer bracelet on her wrist, voluminous hair framing her face as dappled sunlight illuminates her brilliant smile." And as you pointed out, this description was written by Aubrie and not every description is so poetic, but that's like reading a novel there. When I read that, I looked and obviously all the photos on my Instagram do not have descriptions that are nearly as vivid. And so I'd love to hear you talk a little bit about the opportunity that non-disabled people have to do things like making visual content accessible to others.

- Thank you for that. So blind people are on Instagram and Twitter and Facebook and we navigate the web. So in order to have full access to photos, there needs to be an image description. So what Chris read was a very poetic and an artistic description that Aubrie and I worked on together because we both really value accessibility. Most descriptions are much, much shorter, maybe one or two sentences captioning the heart of the image. What message does this send? Sometimes an image is a fun cat photo. Sometimes an image is a job announcement. A lot of important information is put in visuals and blind people should have access to them as well. So when you post visuals, photos on social media or websites, add image descriptions so it's accessible. And a resource for your tech teams is the web content accessibility guidelines. It's a set of technical standards for making digital content accessible. So there's information for blind accessibility, for deaf accessibility, for people with cognitive disabilities or other forms of disabilities. So web content accessibility guidelines encourage your tech teams to review websites and digital content to make sure it's accessible. It's also really helpful to have disabled testers and an accessibility team that can review websites and apps for accessibility and make sure they're accessible. Digital barriers have grown during the pandemic. A lot of stuff moved online without first checking for accessibility. So many of us are experiencing more barriers now and it doesn't need to be that way because digital content can be accessible. So encourage people to use the web content accessibility guidelines and testing for accessibility with disability experts. Back to you.

- Thank you. Along the lines of things that can be done in your brief disability accessibility guide, you have these harmful messages to avoid, but then also on your website you have the opposite. You have great messages we can send. Can you talk about some of the positive things that can be said or language that we can use to help battle ableism?

- Stories are really powerful. So conversations like this where you amplify disabled voices, that is incredibly powerful. I'd love to have more companies, employers amplifying the voices of disabled employees and that really helps other employees learn about accessibility tools, what's helpful, what not to do, and it helps more people feel comfortable talking about disability and accommodations. So amplify disability stories. Do it respectfully. One thing that many people do that's problematic is overusing the word inspiration. A lot of disabled people don't like the word inspiration because it's often used as a disguise for pity. When people are uncomfortable and nervous, they'll say, "You're inspiring." I am happy with the word inspiring if it's used toward action. So when people call me inspiring, I ask, "what are you inspired to do?" If you feel moved, allow that emotion to guide you toward action. Think of a barrier in your community and join us in doing the work to remove those barriers and make our communities more accessible. Back to you.

- Well, this conversation has been really amazing and I want to thank you for joining me. As we come to a close, we always close with the same question and I'm eager to hear your thoughts. With everything that has been going on in the world over the last two and a half years with the pandemic and all of the challenges and inequity, what in this experience for you has given you some hope for the future?

- Before the pandemic, many employers would tell disabled people, "Oh, we're sorry that can't be done." Many disabled people asked for the option to work remotely, maybe because the workplace wasn't fully accessible, maybe for health reasons, and many employers said, "Nope, can't be done!" Then during the pandemic we discovered, yes, it can be done. And more flexible options were created for disabled people and non-disabled people who need them. And I'm hopeful going forward we will continue to have these flexible options. Some people work best in-person, other people work best remotely depending on health and life situations. So I'm hopeful that we'll continue giving people the flexibility they need to bring their best selves and their full talents to work. Thanks for having me here.

- Haben, thank you so much. This has been a really amazing conversation. We are so thrilled to be able to celebrate our 100th episode with you as the guest. And thank you again for everything that you do to help make the world a better place.

- You're welcome.