An Evening with Haben Girma
Originally presented November 17, 2022
Haben Girma, noted human rights lawyer, disability justice advocate and author of Haben: The Deafblind Woman Who Conquered Harvard Law, sat down with moderator Peter Slatin, Founder and President of Slatin Group LLC, for an in-depth discussion about advocacy, disability rights, and the ways that ableism continues to affect people with disabilities every day.
Ms. Girma’s book — featured in The New York Times, Oprah Magazine, and the TODAY Show — is available via BARD Books. Eligible readers can go to the National Library Service for the Blind and Print Disabled at nlsbard.loc.gov/login/NY1A and look up code: DB96188
Also available in print, ebook, and audiobook on Amazon and most local bookstores.
Dr. Roberts: Good evening, everyone. I’m doctor Cal Roberts, president and CEO of Lighthouse Guild, and I am thrilled to welcome you to an evening with Haben Girma. What an overwhelming response we have with over 150 people here, both in person and on the live stream, so we are grateful for this opportunity to host the discussion between Haben Girma and Peter Slaton, two leaders in the field of disability rights and to discuss Miss Girma’s book, Haben: The Deafblind Woman Who Conquered Harvard Law.
Lighthouse Guild strives to lead the way in helping people who are visually impaired to attain their goals. This event, with our first Morse award lecture recipient, will shine a vital spotlight on advocacy, awareness building and barrier breaking. Let me introduce tonight’s two speakers. First, Peter Slaton.
Peter is an award-winning journalist and a longtime advocate for disability rights. He is the founder and president of Slaton Group, which provides education and training to the hospitality and tourism industry on services to consumers with disabilities. A long time leader and supporter of Lighthouse Guild, and a current member of Lighthouse Guild’s Advisory Board. I rely on Peter often for his keen insight and his guidance.
Our second speaker, of course, is Haben Girma. She’s a leading human rights lawyer advancing disability justice around the world. The first deafblind person to graduate from Harvard Law School. She’s also a White House champion of change and much more. Her memoir, that many in the audience have read was featured in the New York Times, Oprah Magazine and the Today Show. In this, she charts her personal path and professional leadership. Please welcome Peter and Haben.
Peter: Thank you so much, Doctor Cal. It’s really an honor to be here and to be here with Haben especially. I’ve been a longtime admirer of her and we first met quite a number of years ago, when she was at Disability Rights Advocates in Berkeley. And I was so pleased when she launched on her own and went out into the world as a champion in her own right of disability rights. So, we have a lot to talk about, and I know after our conversation, Haben has generously and graciously agreed to be here for people who want to come up and speak with her or she will go into the audience. I’m not sure. We’re also here with our two dogs, our Guide Dogs, who’ve met and made friends. Mine is Inga. Hers is Mylo. And hopefully they’ll get to me again.
So as we talk, you’ll see, and you’ll learn that Haben is warm and funny and sweet. And smart, of course. But don’t let all of that fool you. Haben is an iron fist in a velvet glove when it comes to championing disability rights. Haben, you’ve been around the world and you will continue to go around the world? You’re set to do that and next week or so. And we’re going get into some of the things you’ve learned on the way. But first, I want to talk about how we introduce ourselves here. There is a bit of a controversy in the blind community and in the disability community in general, about whether we should and how much we should describe ourselves to an audience that may include a lot of people who cannot see us. Do you have a particular viewpoint on this?
Haben: Fantastic question and excellent needed start. I also wanted you a quick summary on communication. So, you know, I’m deafblind. To understand what Peter is saying, I’m reading the words in Braille. I have a Braille Note. For those of you who know blind tech, it’s a Braille Note Touch. Braille Note Touch Classic. And I’m reading the Braille as Peter is speaking. And there’s a slight delay between what he speaks and when I respond. And that’s because the communication is coming through. Part of accessibility is patience. We talk and listen and engage at different speeds.
Some people sit still to communicate, listening and enthusiasm. Other people need to move around in order to process information to listen. So, lots of different ways to show listening. To voice and communicate. And we need to create spaces where all those different ways of voicing and listening are valued and respected.
So, a controversy in the blind community. How do we describe ourselves? Should we describe ourselves? Some people say if it’s information provided to sighted people, bling people should have that information, too. And other people say, wait a minute. This is the conversation about the ABA and the law. What you look like should have nothing to do with the ABA and the law. We do live in a society that suffers from racism and sexism and evilism and so many other forms of oppression.
Denying information to sighted people should not be another thing we’re doing. I’m in favor of self-descriptions. What do you think, Peter? Should we do self-descriptions?
Peter: I think we should do it, but I think we also have to think of the limits of where that is, becausem where do we stop? Is it just about what we look like? Should we talk about our religion or sexual orientation? Our degrees, our education degrees. Where does the information stop that we should be providing to people and how detailed should we get in our self-descriptions?
Haben: Those are all good questions. A part of this is safety. If someone is still trying to figure out their gender and doesn’t feel like describing their pronouns because they’re still on their journey of figuring it out, I can respect their decision to say I don’t really want to identify myself right now. But, if another person feels safe and saying my pronouns are she/her, I’m a black woman wearing a red dress, long dark hair. Then why not allow that safety to give blind people visual information. So, it depends on every person, how safe they feel and whether they will share information or if they’re just not in a space where they can share information.
Peter: Well, I don’t mind sharing some information and I think that you just described yourself. Is that right?
Haben: I did. I did.
Peter: Sneaky. I am a white male with not much hair left and I’m wearing a white shirt. And I think black or gray pants and brown shoes and I have a yellow lab guide dog. I guess I’ll stop there. But, what concerns me sometimes is when, if you have a large group of people and a limited amount of time and everyone begins to describe how they look. Not everyone has a kind of filters or any ability to keep it short and the conversation that we want to have about the ADA and the law or about what Haben has learned about the world can be cut short. So, I think information is valuable, but we have to be judicious about it.
Haben: We do need guidelines to help people figure out what to share. And right now, part of the controversy is because there are four quality descriptions out there. Like, someone described themselves as looking like a brown Kim Kardashian. Maybe, if you’re sighted and used to watching Kim, you can imagine a brown Kim. But, for a lot of blind people that is not really a helpful description.
Peter: You know, there is information we really don’t need. If you don’t mind, I’d like to move to another topic that we exchanged some thoughts about. I like to say change language, change thinking. And one of the words that is very common for us to hear as disabled people is that we are inspirational. That we inspire someone.
Most of my disabled friends, blind or otherwise, really cringe when we’re told that. I certainly do. Why do you think that is? How do you feel about it and why do you think that is?
Haben: I feel that the word is okay if it’s used in a good way. Words often are not the problem, it’s the history and the context and how they’re used that’s the problem, and in the case of the word inspiring and inspirational, it’s often used in situations where people are feeling awkward and feeling pity. And contempt. But they don’t want to say that. So they say you’re inspiring. And then the often leave.
I had a situation when I was in law school and I was standing by a table at a networking event. My Braille computer was on the table, my interpreter was on the other side of the table, and she was typing descriptions of what was going on in the room. And there were attorneys there to talk to law students about job opportunities. So I asked for one of the attorneys to come over. He came over, but he would not talk to me. He only spoke to the interpreter. He told her wow, what a beautiful dog. Does the dog go to class with her? That must be a smart dog.
And I spoke up and I said, I’m deafblind and I’m reading everything you’re saying in braille. My interpreter is typing it on the keyboard. I know this can be a little confusing. It might make sense if you try typing. Do you want to try typing? And again, he would not talk to me. He only spoke to the interpreter. He told her, I’ve enjoyed watching you two. Tell her she’s very inspiring. And he walked away. He was not inspired to offer me a job. That’s an example of a situation where inspiration was that, and on the surface it’s speech and kind and a positive word, but, given the history and the context, it’s actually masking pity and condescension. And a lot of disabled people have experiences like this, which is why we often don’t like the word and ask people to stop calling us inspirational.
Peter: Well, you know, one time I was cross country skiing. Competing in a race in Anchorage, AK. I was being guided. And it was a long race and toward the end I kept falling down. And one time I fell down, and these skiers, sighted skiers kept swooshing by me. And everyone of them said – I had a bid on that said blind skier. Every one of them said, you’re such an inspiration and no one offered to help me get up.
You know, it’s this brings up a whole range of behaviors and language tied to the way society views disability and we use the word pity. I think that is really at the core of how we try and fight against discrimination. How we try and peel away the feelings that give rise to pity. I believe those feelings are rooted in fear. Because people don’t know our experience. Because if they didn’t, I don’t think they’d be afraid.
Haben: You’re right. Fear is the heart. Fear is at the core of a lot of these painful, hurtful experiences. Trying to educate people that their reactions are based in fear, trying to introduce people to ableism is often met with defiance. I’m just trying to be nice. What’s wrong with inspirational? I’m just being nice. Or, if someone offers to help you when they grab your arms, pull you across the street and you say no, please don’t grab my arm. They are going to get offended and say jeez, I was just trying to help you. Why are you so mean?
Peter: Good question. You’re just mean.
Haben: So yes, sometimes we have to be a little mean to stand up for our rights. Our rights to not be grabbed. To be able to walk across the street in peace. We also should be able to get help if we want help. Some people want help crossing the street, so we do want people to offer help, but ask and listen to the responses rather than just grabbing people.
Peter: You know, at the very first hotel where I, brought out my program of training people in hospitality. I asked the general manager to have someone take me to the gym and show me how to use the equipment because it’s all touch screens. And he said to me, we were told that you all want to be independent. I said, doesn’t everybody? We all want to be independent until we can’t. Now you have a great word for the way to approach this, and I love’d hearing you say that this afternoon. And I think it bears repeating.
Haben: I’ll share that story. There is this myth that non-disabled people are independent. And disabled people are dependent. And this myth is still powerful that a lot of disabled people are shamed for not being independent. When I was growing up, I was constantly being scolded. You better learn this or that, you better learn to use a cane, otherwise you’ll never be independent. And independent was also code for being like non-disabled people.
Well, in actuality, non-disabled people are not independent. They’re interdependent, and so are all of us. We all need other people. Add my favorite example is, a lot of people like drinking coffee. But very few people grow their own coffee beans. We depend on other people to grow the beans. And if it’s non-disabled people asking someone else to grow the coffee beans, it’s considered okay and fine. But if a disabled person asks someone else to grow the coffee beans somehow that’s shameful.
We need to be honest about the fact that all of us are interdependent. We all need each other. We all need community.
Peter: You know, independence is also something that we. as Americans, are kind of spoon fed, growing up that we need to be rugged, individualist and independent. And I wonder if, in your travels around the world, what differences in looking at this question you found, where have you found other ways of looking at disability and so-called independence.
Haben: The concept of independence as we know it in America is very American. A lot of other communities are more community oriented and that is great to an extent. That also can be taken to an extreme where it’s toxic. So ,in parts of Ethiopia, a disabled person is considered a curse on the family and it’s the family’s responsibility, the family, that specific community’s duty to take care of the disabled person. And that often results in the disabled person being hidden when guests come. Being kept out of society and, should facilities and school be made wheelchair accessible? Should there be braille throughout the community? If the argument is, it’s jus the family’s responsibility, there’s no incentive to make curb cuts and elevators and other accessibility features that would be countrywide. And that’s not just in Ethiopia.
Taking community to an extreme happens in other places as well, so there needs to be a balance. We all need to participate in making our world more accessible. The family should be involved, but also the greater community should be involved as well.
Peter: One of my colleagues right here in America, when she and her family go to their temple, their religious temple, they are told that they should – their sister and daughters’ disability is due to shame in the family, so it’s not just in Ethiopia for sure. Now, you are not a lone voice in the wilderness when you go to Africa, when you go to Europe or Asia to talk about disability and work toward community involvement. Community support. But, are those barriers much bigger overseas than they are here? And how do you work to bring them down? What needs to happen?
Haben: I don’t think they’re bigger overseas. We have pretty big problems here.
Peter: All right. So, what can we learn from elsewhere. What can we learn from communities that don’t have an ADA, that don’t have a committed educational system, or at least one that speaks of commitment to disability rights and equality?
Haben: I’ve traveled all over and every community has something they do a lot better. In Singapore, they have an amazing metro system, almost entirely wheelchair accessible – the platforms, the stations. And here in New York City, we still have a lot of stations that are not wheelchair accessible. Or in San Francisco, we have a lot of stations where the elevators exist, but they’re broken. They’re taking a long time to fix them.
And I was recently in Greece and they had tactile paving paths on the ground so you can feel through your feet a tactile guide going along the sidewalk. And I believe those started in Japan. Japan has the greatest number of tactile guiding paths on the sidewalk.
Peter: So, there’s a lot to learn from elsewhere. What do you think we can offer other societies?
Haben: What we as is Americans can offer?
Peter: Yes. As as people with disabilities in America.
Haben: You know, we are known as a nation for being very litigious. And that’s not a great thing. But, we probably enforce our disability rights a lot more than any other place. And that has been very, very powerful for the disability community. So, the act of advocating or even taking it all the way to court when you have no other choice, that is really, really powerful.
Peter: When you were at Disability Rights Advocates, which if you don’t know, is a wonderful nonprofit law firm in California, and here and has affiliates in many states. You were there in the Berkeley office. I can’t remember if you were a fellow or an intern or just a junior associate. But you at some point said. I need to move out of this role and into a broader role, there’s something more that I can do here. What led you to that decision?
Haben: So, I started as a Skadden Fellow attorney and then I became a staff attorney. And the law is very, very powerful. There’s so many situations where you educate someone and they refuse to listen, and you kindly ask them again and again they ignore you. Those are situations where it’s amazing to actually have a lot that says you have civil rights, which is not the case in many countries around the world.
So, I found power in that and I did that for a while, but I also noticed it was quite limiting. Working there I was just focusing on litigation. And there’s so many opportunities to educate people that doesn’t need to go all the way to litigation. There are a lot of people who want to do the right thing. The tech community is full of people who want to harness the power of code to build products that everyone can use. Products you can see, you can hear, you can touch and maybe tasted and smell as well. So there’s a lot of potential there. And I wanted to be able to educate people rather than just doing litigation.
Peter: And when you said I’m going to launch my own business, what did you anticipate with the barriers? And what did you find were not barriers. And what barriers did you find?
Haben: My fears are probably similar to the fears of a lot of people going into business for the first time. Will I get any clients? Will anyone work with me? Will I survive? Am I going to fail? So, those were my fears, and I think it’s a greater risk for someone with multiple disabilities and a woman of color to go into business. And, I was fortunate that I met a lot of people who said yes, we want to work with you. And it’s been going really, really well.
I know that’s not the case for a lot of people. There’s still so much ableism for disabled people running their own businesses. I’ve used that word several times. A B L E I S M. That is a system a beliefs and practices that the disabled people are inferior to not disable people. So, a programmer who’s building a new app and only thinks about sighted clients and doesn’t think about blind clients or clients or clients with mobility disabilities. That’s an example of ableism.
Or a tech company that puts out a job application in an inaccessible format. Or they call people for an interview but refuse to get a sign language interpreter. All of that falls under the falls under the umbrella of ableism. It’s the idea that you only have value if you can act and appear non-disabled.
Peter: You know, with the onset of the pandemic, a lot of employment went remote. And, of course, the disability community has been screaming to be allowed to work remotely. Forever. And suddenly the world that said that was just not workable found it to be very workable.
You know you use the word ableism, and yet – what I wanted to say is one of the things that is happening now is that more disabled people are seeking employment. More employers are thinking about hiring disabled people. But for disabled people, there’s still a big question of when to disclose their disability if they have a hidden or invisible disability?
When I was first working as a journalist I could pass because I could walk without a cane, at least for a little while. So I didn’t disclose. And that harmed me. But I know many people still don’t want to expose themselves to the risk of termination or being shunned or being pitied. All the things that could happen to a disabled person. What’s your take on this, what’s your advice if you have any?
Haben: It’s different for every person and I think you should do what you feel safe doing because we’re all at different stages in our journey. Some people are at a more precarious economic situation and have more to risk, whereas other people have more privilege and can wait until they find an employer who will embrace their full selves.
I remember when I was looking for jobs, summer jobs in Alaska, my original resume said that I worked as a braille tutor. And then I changed it to worked as a reading tutor. And I got more responses that way. So, I understand the desire to hide disabilities to be able to get into the door and get opportunities. The risk there is that you just spend more time with employers that are ableist and are going to make it unhealthy job situation for you.
So, my personal preference right now is to disclose sooner, but I’ve been in those situations where I didn’t disclose in the beginning and I felt like I couldn’t risk disclosing. So, it’s depends on each person.
Peter: When did you first hear the word ableism? Do you remember?
Haben: I don’t remember. I’ve been involved with the disability rights community for a while and I feel that engaging in cross disability work was really powerful. In the beginning I was mostly engaging with the blind community and going to blind events. And I feel like it was going to cross disability events and meeting with disabled people from a variety of different communities and lived experiences that really expanded my disability rights knowledge and vocabulary.
Peter: Thanks. Another thing that happened with the pandemic is that people started talking about isolation. Non-disabled people. There was an epidemic of isolation. I believe the disabled community has long experience with being isolated. And being isolated. What do you think we have to teach the non-disabled community about isolation?
Haben: There’s so much to learn. Where do we even start? I think it’s important to recognize that relationships are work, and if we want connections, we have to put work into it. So, the pandemic put up a lot of barriers and that made connecting hard. You couldn’t just meet up in person casually. You had to actually think about how are we going to connect, what tools are we gonna use, what amount of contact is even okay. You had to think and plan the human connection and a lot of non-disabled people just said, nah, too much work, just going to stay home and watch Netflix.
But disabled people had practiced planning and thinking, how are we going to meet? What’s the best place? What’s the most accessible way for us to connect and communicate? Because relationships are worth it. Yes, there’s work in planning and finding accessible locations, but it’s absolutely worth it. So, that is one lesson disabled people can teach non-disabled people.
Peter: Thank you. Yes. And I think that goes hand in hand with what you said earlier about patience, we learned to be patient. Because it takes us longer sometimes to do things than other people. But patience also can be a real blessing because gaining it is not easy and once we do, it’s really helpful.
Haben: Also, I want to talk about time. We sometimes use the phrase crip time and that word crip comes from the word crippled, and some disabled people have chosen to reclaim the word crip. It used to be only something negative. A slur. But now people are embracing it, and there’s even a film titled “Crip Camp,” which is awesome and you should really watch. So crip time comes from that and the concept is that time as we know it is often designed for non-disabled people. And I think it was actually inspired, time was often inspired by wanting to make sure machinery like railroads and trains could be operating on time. The concept wasn’t really designed for humans to be safe and connected.
So, crip time acknowledges that bodies change, minds change, discrimination happens. Maybe someone’s late because the first Uber they called refused to take a guide dog. Maybe they’re late because they arrived at a station and the elevator was broken, so they have to take the train back another station and then roll over a much longer distance. So crip time is a phrase that kind of captures all of that.
Peter: Thank you. I’d like to switch a little bit because we have, I know a lot of people here who are either parents or perhaps children – we’re all children of parents. And. you wrote very movingly about your family and your parents and your journey growing up as a deafblind person. And coming into that. I believe there isn’t nearly enough support for family communication in the blind services industry or not industry, but in the blind services world, agencies like the Lighthouse or like any other agency where the blind or deaf person or the person with a disability is removed from that family embrace and the two entities, the parents and the child, kind of move in different directions. Is that what you saw happen in your life? Or how did you see things move differently in your life that gave you some of the strength you have?
Haben: I have written about my family in my book and it’s very complicated. Still, my parents told me you can do anything you want. You’re capable of doing anything. But, they’re also parents and also fearful of all the dangers out in the world. And when I was in high school, I asked them, there’s this amazing program that helps build schools in Mali, West Africa, and they pay for the trip. High school students go to Mali, spend two weeks building the school, physically building the school, and it helps kids in the village, you don’t have access to education and I want to help. I want to be part of the change to make our world better.
They said no. And I asked them, why? Why don’t you want me to make the world better? And they said there are too many dangers. You could get malaria. How are you going to build the school if you can’t see it? I explained that I felt I could build a school. I had experience using shovels. My dad made me help out in the backyard. So he gave me some of these skills. But they still were not convinced and said I could not go and build a school in Mali.
They have their idea of what a disabled child could and couldn’t do. I went to the program manager and I told her what was happening and I asked her if she could speak with my parents and we sat down to lunch. They shared their fears. What about malaria? How is she going to build a school? And the program manager told them the non-disabled students also don’t know how to build a school. We’re all going to be learning together. We don’t know exactly how it will work, but we’ll figure it out. We’ll find a way.
And that assured my parents and they finally gave their blessing. I went to Mali and helped build a school. The program manager physically showed me there’s the seive. Where do you pour? Where’s the sand pile? So, I got a physical demonstration and then I was able to just do the rest on my own taking turns with my team members because we were a team all learning together.
Then I came back to America and my parents confidence increased just a little bit. They’re still my parents, they’re still worried.
Peter: They always will be. Yet, we have to, as parents, learn how to trust our children to move forward in the world, whether they’re disabled or not. And where are they today? Helping you. Or not.
Haben: So, they are more comfortable with me traveling now, but even now they’re still worried and nervous, and they’d like me to check in when I’m traveling and if they hear about a rain storm happening where I am, they check in. Do you know there’s a storm coming?
Peter: That’s nice. I’m happy for them and for you. Let’s talk about your book. It’s a wonderful book and if you haven’t read it, go out and get it and read it. It’s beautiful and one of our audience members sent in a question, curious about the process you went through. I’m curious about what made you decide at 31, that you have enough of a life story to tell to write a memoir.
Haben: So, if you read the book, you find a lot of the stories are stories that many of us have experienced. Washing dishes, arguing with your parents, that’s something a lot of people can relate to. So, when I left the law firm, I wanted to find ways to advocate and I felt the biggest barrier was ableism. But a lot of people don’t notice how ableism is in our schools and our dance floors, and I wanted to be able to teach people that. Stories are powerful. Stories are a way to reach people emotionally and to share lesson.
So I looked over my past and sought out anecdotes that would highlight examples of ableism, sexism and other barriers that are often hidden in our community. So that moved me to write the book all the chapters and stories are fun lessons that will teach people.
Peter: You know you recently took your beautiful guide dog Mylo to Africa. To Kenya. I recently went to Kenya and I chose not to bring my guide dog. And I’m really curious how your experience was there. It’s not a place where Guide Dogs are common. And I’d say with few exceptions, most countries around the world are not prepared for guide dogs. What did you find and how can you help change the dynamic of what you found about people and guide dogs in Africa and Asia, wherever you’ve gone and found resistence?
Haben: I think Mylo was the first American guide dog b to go to Kenya. And almost everywhere I went in Nairobi the people I was interacting with had never encountered a guide dog before. My very first day I had an interview with one of the national TV programs called NTV. And we arrived at the station and security said, no, you can’t come in, no dogs. And we explained, they know we’re bringing a dog. In fact, the they asked us to come in so we could talk about guide dogs and they said no, you can’t come in, no dogs.
So, we had to call up to the studio and explain security was holding us back, and they came down, talked to security. I went on, we had an awesome interview where I got to talk about guide dogs on national television. Then later that day, I wanted to go to the mall. I went to the mall, but to enter them all, there’s security. And they said no, you can’t come in. No dogs. And I explained it’s a guide dog. It’s trained to help blind people. No, you can’t come in. Do you know NTV? And they said, yeah. And I brought out a photo from my interview. They were impressed and they let us in. That photo turned out to be a huge asset during that trip.
So I used all kinds of strategies, education, television to try to gain access. It does get exhausting. That mall was right next to my hotel, and everything from ATMs to ice cream was in that mall. And I went there about 8 times and every single time security said no, you can’t come in because it was a different security person each time. And we had to go through it all over again. So, it’s exhausting. But I chose the whole point of my trip to Nairobi was to educate people about disability rights. And that includes guide dogs.
I went to a school for the blind there. And students had never heard of guide dogs. They loved meeting Mylo and they’re very excited. They want to start a guide dog school in Kenya now.
Peter: That’s wonderful and I’m sure it will happen. Because the blind there is strong and getting stronger. And I bet all of those experiences are experiences you had right here in the US with Mylo with someone saying you can’t come here with that dog.
Haben: Yes, yes. Those experiences happen here, too. I get service denials quite frequently in the US. I think less in the San Francisco Bay area. Less in communities that have a guide dog school nearby. But it still happens in the United States.
Peter: So, what do you think is the most important message that people can take away from here and help get out in the world to fight ableism to dispel ableism? How can people do that?
Haben: Society is frequently trying to frame disabled people as the problem. And, unfortunately, some of us internalize ableism. I know I have internalized ableism. It’s really, really hard to not internalize it. So, one thing we need to all practice is reframing the messages we got from society. If we get a message that we’re an inconvenience, we’re a burden, we’re a problem, resist that thinking and say no, you’re not the problem. Ableism is the problem. And reframing those arguments helps you and also helps connect you to a community of other people. Because we’re stronger together when we have a community of advocated who understand what’s happening that. That’s very empowering.
Peter: Thank you and I think part of that is learning for all of us to recognize the ableism we’ve internalized. Just like any implicit bias that we carry with us because of society, the more we can recognize it and acknowledge it, the easier it is to move away from it, to move past it. I think that is so important.
Haben: I agree. So all of you listening to this conversation, please help teach more people in our communities about ableism. Help teach people to notice it, and then once they notice it, work to remove it from our communities.
Peter: In the time that you have been traveling the world since leaving DRA, what changes in attitude and behavior have you seen? I ask this because in my business, the first 5-8 years were very difficult when I ask people if they needed help learning to welcome people with disabilities into their businesses. And of course they said, well, no one comes here with a disability. And that has started to change of course as more of us are out there. But where have you seen changes and where are you finding more resistance?
Haben: There have been a lot of amazing changes. I feel like more of corporate America, the diversity of programs are starting to actually include disability. For the longest time, diversity programs from schools to businesses, would just skip over disability as if disability is part of diversity. But more recently, they’re starting to include disability and diversity, and marketing campaigns are now featuring more disabled people. It’s always exciting when disabled people are featured in and ads and programs.
Social media has been very, very helpful for disabled people to share our voices. I really love following disabled influencers. I learned a lot and you get to experience new, different ways of thinking. Learn about new struggles.
Peter: There are so many. My Twitter feed is full of disabled influencers, including you. And, that’s where I began seeing questions about how we should describe ourselves, for example. Do you think that this change is permanent? Do you think it’s moving forward in the right direction? Do you see it as circular or elliptical or do you think it’s linear?
Haben: I think it’s moving in the right direction, but it’s not moving fast enough. It needs to move a lot faster. And discrimination in employment, I feel, hasn’t changed enough. There’s still so much discrimination, and now they’re using AI tools that discriminate even more. There’s so many biases built into AI, and it’s frustrating. So job applicants who are disabled don’t even get to the interviewed by or judged by a human. Instead an AI algorithm is judging them and because of the biases just assumes the person is incompetent because of the disability.
Peter: And of course that AI algorithm was designed by who? A human. That’s where the biases get built into AI and other forms of communication.
What’s next for you? I guess you’re going to keep doing this, but how are you changing your message? How do you see it evolving?
Haben: Some of the changes that have happened are the change from person first to identity first. I’m using identity first more now. I think when I was working at DRA, I was using more person first language, and if you read my memoir, there’s a mix of person first and identity first.
Peter: Can you explain what those are?
Haben: Person first name from the concept of don’t see the disabled. Don’t see the disability, see the person. Don’t see the disability. See the student. So, people emphasize person with a disability, student with a disability. Now, activists are saying that’s awkward and cumbersome and perpetuates discrimination. Let’s use identity first language, let’s say blind person instead of person who is blind. It’s particularly awkward when you have a list: woman. And then you switch over to seeing person first, people with disabilities.
Peter: Person who happens to be a woman, who happens to be blind, who happens to be deaf. Gets cumbersome.
Haben: Exactly. Exactly. So, linguistically, it’s advantageous. It saves you time and fingers when you’re typing. If you could keep it short and use identity first language.
Peter: It also speaks to the change that we’ve seen as people try to find or try to accept the word disability to say I have a disability, I’m a disabled person, I’m a blind person. I don’t want to say I’m a differently abled person or I’m handicapped or I have a special need on. I do have some special needs but we won’t discuss those in this forum. Just kidding.
So yeah, I think the embrace of disability and the rejection other forms of trying to say disability, there’s a way of saying don’t be afraid. Not just of this language but of this way of being, this way of living.
Haben: There’s a lot of shame attached to the word disabled, and people use other words like differently abled to try to avoid the shame. But that does not get rid of the shame. The shame just tags along onto the new word. We need to tackle the shame head on. It’s the shame that’s the problem. It’s not the word disabled that’s the problem. Disabled is very honest and direct. My eyes don’t work the way someone with 20/20 vision’s eyes work. So, I’m being honest and direct, but I’ve seen my sight is broken. I’m blind. I’m disabled. If someone assumes that that means I can’t do anything, absolutely nothing, that’s on them. That’s ableism. That’s making assumptions.
So, the words themselves aren’t the problem. It’s the shame, and the ableism hat’s the problem.
Peter: But, if you say your sight is broken, does that imply that your sight needs fixing? In order for you to function?
Haben: If it can be fixed, why not? I’d love for it to be fixed but in my case medicine it’s not able to to help or change it. Though there’s the possibility for that in the future.
Peter: There’s always that possibility, but I think you’ll agree that it’s more important than waiting for a cure or a fix that might or might not materialize, learning to live. Independently, interdependently. With and without accommodation. Is something we all strive for. And I like that word accommodation. I’d love to talk about that a little. What’s your view of the word accommodation especially as an attorney? Because the ADA refers to reasonable accommodation for disabled people.
Haben: So, the ADA was written with very good intentions. That was in 1990 and since then, not so good lawyers have tried to whittle down the purpose and value and promises of the ADA. There’s been a lot of debate of what does reasonable accommodation mean. Is this a reasonable accommodation or is it not? And that is frustrating and disheartening that the whole purpose of giving disabled people access is now up for debate because of the ambiguity of the phrase reasonable accommodation. So I have some frustration with that.
Peter: I absolutely agree. You know, as I used to write a lot about architecture and design and still speak to architects and I still hear from architects that their clients say to them, we don’t have to worry about this ADA stuff, do we? We can get away with not doing it, can’t we?
Haben: That’s a compliance-based approach and that’s very limiting. That treats the ADA as a problem rather than treating disabled access as an opportunity to innovate and build better. So, rather than seeing disability access as a problem that you need to check off or that you can skip and avoid if it’s not specifically mentioned in a guideline. Let’s instead see how can we design facilities, buildings that bring joy and delight to people who can see, people who can hear, people who can’t hear, people who can’t walk. All kinds of lived experiences.
Peter: You know, that sounds so simple. It is so simple. Yet, there is so much history. Such a long history of the world, world history is one where that just didn’t have to happen. It was very rare. People with disabilities were are either to be shunned completely or celebrated as magic beings, the blind Oracle of Delphi. There’s just so many such examples. How do we get that ruling, we can’t just make it happen by wishing.
Haben: So, it is a lot of work and it feels overwhelming. Writing a book feels like a lot of work and feels overwhelming. But if you look at it at one story at a time, one issue at a time. You can keep moving and keep tackling one issue at a time. So, rather than feeling overwhelmed by all the ableism and barriers, let’s move one barrier at a time and we’ll all do what we can to remove those barriers.
Peter: Speaking of barriers, and there are some parents here who have children who are moving toward college and there were a couple of questions that were asked about, how do you help your child or how does your child deal with the baked in. inaccessibility or ableism of the application process of taking SATs, of all of those things that colleges have long carried with them. Your college was extremely evolved despite the cafeteria. But that’s, I think, still rare.
Haben: You’re right, it is very rare for colleges to embrace braille when they’ve never had a braille reader before. My recommendation to parents is connect with disabled adults. Find your child’s mentors. Help them connect with the disability community. I went to a camp for the blind when I was in middle school and high school, and I met blind counselors who’d gone through college, and they could share tips on the application process. Testing. So, if you could help your child find those communities where they can then find mentors and friends that would be very powerful.
Peter: That’s so powerful because I know that I first started truly evolving as a blind person when I finally met other blind people who had become well-acclimating to being blind and found their way in the world and I could learn from them. Before that I had no one to learn from.
Haben: Me too. I found a lot of connection by going to that blind camp, meeting other blind campers from across California and their confidence helped me build up my own confidence.
Peter: Well, it seems to me your confidence is doing pretty well these days.
Haben: Thank you for that.
Peter: It may not always be the way. I mean, we all struggle, you know, but, it’s such a pleasure to sit here, Haben, and have this discussion. The way we are trying to make the world a better place for disabled people. And which makes it better for everybody.
My closing thoughts is we could keep going but. I really think what’s important here is again how we keep moving forward to reframe the narrative on blindness, on deafness, deaf blindness, on disability. You know, there’s actually something that goes alongside the ableism. You know, we talked about fear, fear of disability and how that is also baked into ableism, that’s how it’s expressed through ableism.
There’s one other condition that people’s fear is similar way and try to avoid thinking about or discussing. And that’s expressed as ageism. And I think ageism of ableism have a lot in common because many people who don’t have disability will develop them. And hopefully, we’ll all have the chance to be older people. So, I think that’s part of this discussion. I wonder if you have any thoughts on that, Haben, as a very young person.
Haben: I agree with you that ageism and ableism are connected. Ageism could be a form of ableism. We deserve dignity and access to every stage of our lives. And it’s something sometimes younger people forget or they take their abilities for granted. And it’s important to imagine all different kinds of lived experiences. And then share with respect and dignity for all those different lived experiences.
I know we’re doing closing remarks, so I want to add that I’m looking forward to meeting a lot of you, so I’m going to be staying after the session to meet with people who want to meet. I have a friend in the audience name Sukanta Gupta who’s a tactile artist, a blind designer and she has some tactile pieces to share with anyone who wants to experience that.
Peter: I’ll ask for one more comment about intersectionality. We’re talking about identity and intersectionality and we’re also talking about diversity, diversity, equity, inclusion movement and how disability has been left behind. I have described disability as the poor stepchild of the diversity, equity and inclusion movement, but that’s changing because, in part, disability is the most intersectional of all of the things that qualify for being diverse, whatever that means.
Haben: So one great sample is in self-description. There are blind people who are saying don’t talk about race in self-description. We don’t need to know what race you are, it doesn’t matter. We can’t see race. So that is, unfortunately, a form of racism. We do live in a society that suffers from racism. And the descriptions that are often given to blind people usually goes something like this. A woman with red hair next to a tall black man. Often white, it’s never described, but a person of color is often described as a person of color. Black, Indian looking, and this has been happening for decades and it’s just been tolerated.
Peter: Even in audio described movies, TV shows on Netflix, someone will suddenly be be described as a dark skinned man. It won’t be next to a light skinned woman, they’ll just be the dark skinned man in the room with the woman.
Haben: Exactly. Exactly. So, that is the norm right now. That’s what’s happening right now. And activists have said, that’s actually racist. Stop treating as whiteness as the norm. And people who are used to the way things are don’t want things to change because some people find it difficult to acknowledge white privilege. So, that’s an example of intersectionality and we need to make sure we’re actively anti racist when we’re working in disability spaces.
Peter: Absolutely. Well. I will say, it’s been an absolute privilege. To be here with you Haben, and to have this conversation. For me it’s been very special and I really appreciate your thoughts, your wisdom. I look forward to learning more and staying in touch and I know you’ll have a great time here with the group here, the crowd. And I wish you safe travels.
Haben: Thank you so much for talking with me and sharing your wisdom from skiing in Alaska to traveling in Kenya.
Peter: It’s a big world out there. There’s lots to do.