Haben Read online

  The president’s words appear on a visual screen so that Deaf audience members can access the speech. Michael watches the captions and types what he sees on my keyboard. Someday, artificial intelligence will accurately convert speech to braille in real time. Until then, I need people to transcribe speeches for me. Finding people to facilitate communication, people with strong social skills and fast typing skills, is challenging. Through time and training, I’ve developed a community of people who can provide communication access for me at events, people like Cameron and Michael.

  Michael types the entire speech, all the way to the end. “(Applause. People are standing up.)”

  Turning to Michael, I point down at my braille computer. If I stand up I might miss something. Standing and holding the device in one hand leaves me with just one hand to read, which is slow and awkward. Sitting with the computer in my lap means I can read with both hands. I want to catch everything at this momentous celebration. Every word, every description, every detail. So I stay in my seat as Michael continues painting a scene. “People look emotional. Some—”

  A hand touches my left shoulder. My body recognizes the gesture from ten years of ballroom dancing. Ryan’s hand asks, “Wanna join?” I leap to my feet, dropping the computer on the chair. Two steps later I’m standing in front of Ryan with my eyebrows raised in a silent question.

  My eyes suddenly see someone approaching me. Someone tall. Someone exiting the stage. The president! I feel disoriented without my keyboard, but I move on instinct, offering a hand. He takes it, then kisses my cheek. I can’t see his facial expressions or hear his words. Still, his message comes through. As the president walks on, Joe Biden steps forward. He kisses both of my cheeks, then disappears into the crowd.

  I feel dizzy with elation. What an honor. What a gift. Our leaders acknowledged me through touch, even graciously switching from voicing to typing so we could share a conversation. Their actions stir up hope for a shift from a sighted, hearing world to a sighted, hearing, feeling world.

  Sitting down, I pass the keyboard to Ryan. “Have you worked with people with disabilities before?”

  “Not really.”

  “You did an amazing job. Thank you for all your help today. Not everyone listens when I explain how to guide, use the keyboard, and practice tactile communication. You really listened.”

  When he touched my shoulder, I didn’t know what he wanted to tell me. The suspense felt like the first few moments of a dance. My ears can’t identify the music, so I walk onto the dance floor not knowing if it’s a waltz, swing, or salsa. The process of puzzling out the unknown gives me an adrenaline rush. By listening through my whole body, the dance eventually reveals itself. If we study it, the unknown becomes the known.

  “It was absolutely my pleasure,” Ryan says. “But you are the one who was amazing. That was an incredible speech.”

  I blush. “It was a team effort.” People with disabilities succeed when communities choose to be inclusive. My exhaustive preparation, from writing the speech to training Ryan, propelled the presentation to success, along with the support of Cameron and Michael, the dedication of the White House, and the persistence of all the advocates who created the ADA. Disability is not something an individual overcomes. I’m still disabled. I’m still Deafblind. People with disabilities are successful when we develop alternative techniques and our communities choose inclusion.

  “Ryan, what’s your job, exactly?”

  “I’m a pilot for the Air Force.”

  I nod. “How does that bring you to the White House?”

  “We come here for special assignments.”

  “Special assignments?”

  “Yes.”

  “Got it…” Secret protocols. Special assignments. The White House works in mysterious ways. There are only so many I can solve in one day. I gesture to the room in front of us. “What’s going on now?”

  “People are mostly mingling. Some are here, some are in the other room closer to the food and drinks.”

  Many details remain unknown. Details like the topic of the nearest conversation, or if anyone nearby looks friendly and free for a chat. I could stay seated awhile and ask for more descriptions. Reading about the world from my chair is easy. Safe. Boring. I prefer dancing to watching others dance.

  “Let’s go meet people.”

  Epilogue

  San Francisco, California. Fall 2018.

  Exciting news swept through the disability rights community in the fall of 2015: Scribd agreed to collaborate with the National Federation of the Blind to make the Scribd library of forty million books and documents accessible to blind readers.

  The settlement brought our litigation to a close. Representing the blind community in this case alongside my talented co-counsel was an unforgettable honor. I entered Harvard Law School with the dream of using ADA litigation to increase access to digital information for people with disabilities. That dream had finally come true.

  After the Scribd case, my dreams shifted away from lawsuits. Litigation holds an important place in disability rights advocacy, but it’s personally not for me. Many organizations want to be accessible and just need help moving in that direction. My mission now is to help increase opportunities for people with disabilities through education-based advocacy.

  In 2016, I started my own business of disability rights consulting, writing, and public speaking. Public speaking is a powerful form of advocacy. When done well, it moves people to action. My foray into public speaking began in 2004 when I shared my Mali story with classmates at Oakland’s Skyline High School. BuildOn required us to do presentations for four different classrooms. My knees shook throughout that first presentation. Afterward, feedback trickled in from students and teachers. When I incorporated that feedback into my next presentation, I received a huge round of applause. By the twelfth presentation, my knees had stopped shaking. At the end of the series, buildOn was so impressed, they flew me across the country to speak at their annual gala, a large event unlike anything I’d experienced before.

  An audience is a gift. The most valuable thing we can offer is our time, and speakers who respect that are more likely to connect with an audience. Over the years, my disability rights presentations have touched audiences at venues and events as wide-ranging as the Apple Worldwide Developers Conference, Dreamforce, Google I/O, South by Southwest, Summit Series, TEDx Baltimore, and universities across the world.

  Connecting with people can take many different forms. Recent technological developments and a shift in our culture toward inclusion have increased our ability to forge relationships across differences. I connect with people through texting and email; through social media apps; through words and stories; through humor; through sign language and dance; through a wonderful team of friends and interpreters; and through my Seeing Eye dog.

  Maxine, the loving Seeing Eye dog who created earthquakes in New Jersey, chased me up an iceberg, helped me walk a friend home from a bar, and guided me across the stage at our Harvard Law School graduation passed away on April 16, 2018. For nine years people called me Maxine’s Mom. Some even called me Maxine. Her death shattered my identity. Picking up those pieces felt like picking up glass with my bare hands.

  Her passing dealt a terrible blow to my parents. They saw Maxine as my guardian angel. Even after watching me receive recognition from the president, their fears continued to roar up whenever I traveled. They would kneel beside Maxine, look into her big brown eyes, and say, “Take care of Haben, okay?” Saba would feed Maxine injera, delicious Eritrean bread, even though I explained that Maxine had a sensitive stomach. Girma would sneak her Eritrean spiced steak. They lavished Maxine with food to thank her for watching over me.

  She was ten years old when she experienced cancer. I miss her silly antics, her long nose that would launch my hands off a keyboard, her sweet attentiveness, and the enthusiasm she brought to each trip. The loss of someone who had touched me for nine years, spending hours each day snuggled by
my feet, fur-to-skin, hurts terribly. Maxine’s memory will live on, always, in my heart and in this book.

  In July, 2018, I returned to The Seeing Eye and trained with a new dog. Mylo, a small black-and-tan German shepherd, guides with joy and confidence on our trips throughout the country. He hops from planes to trains with ease, moving with boundless energy. He can relax amid the bright lights and crowds of a stage, even taking a nap during one of my speeches. Mylo’s sweet personality has charmed my family and friends, too. He’s the only dog I know who snuggles with stuffed animal toys at night, holding one in his mouth like a pacifier. Mylo can never replace Maxine, but he is exactly what I need to navigate this ever-surprising world.

  Well, Mylo and the Alaskan. Gordon and I advanced from climbing icebergs to climbing ice walls high above the Mendenhall Glacier. We haven’t traveled up there for a few years, though. Nowadays, we mostly go hiking around the Bay Area, following up each excursion with a mouthwatering meal. Gordon learned how to make Saba’s kitcha fitfit. Saba brings him berbere spice from Eritrea, and he takes care of the rest. They all know better than to ask me to cook. Many years have gone by since the incident at my grandmother’s house, but I’m still traumatized by that bull.

  A Brief Guide to

  Increasing Access for

  People with Disabilities

  All of our bodies change over time. We all deserve dignity and access at every stage in our lives. Most people will need to seek accessibility solutions at some point, whether for a family member, a colleague, or for oneself. Disability is part of the human experience. We all need to engage in the work to make our world accessible to everyone. Inclusion is a choice.

  Why should organizations invest in accessibility?

  Accessibility Promotes Organizational Growth. People with disabilities are the largest minority group. There are over 57 million Americans with disabilities. Around the world there are over 1.3 billion people with disabilities. Reaching a group of this scale allows organizations to grow, increasing community engagement.

  People with Disabilities Drive Innovation. People with disabilities sparked the creation of many of the technologies we use today, from vegetable peelers to email. Organizations that choose to become accessible can benefit from the talents of people with disabilities.

  Meet Legal Requirements. Litigation is expensive and time-consuming. Choosing to make services accessible saves resources in the long run.

  What can organizations do to become more accessible?

  Conduct a survey to identify physical, social, and digital barriers. Work to remove these barriers.

  Plan for accessibility from the start. Designing a new service or product with access in mind is easier than trying to jury-rig accessibility after the product or service has been created.

  Increase hiring of people with disabilities—one of the largest untapped talent pools.

  Hold regular disability rights training sessions to help create a more inclusive culture.

  Promote positive disability stories in the media.

  Talking About Disability and Producing Positive Disability Stories

  How we describe disability experiences in the media can help or hurt the disability community. Positive portrayals promote inclusion, increasing opportunities for education, employment, and social integration. While we can’t change our past, we can influence our future through the messages we send.

  Positive Messages to Send

  We respect and admire disabled leaders, just as we respect and admire our nondisabled leaders.

  We can always find alternative techniques to reach goals and accomplish tasks. These creative solutions are equal in value to mainstream solutions.

  We’re all interdependent and go further when we support one another.

  Harmful Messages to Avoid

  Nondisabled people should feel grateful they don’t have disabilities. This perpetuates hierarchies of us versus them, continuing the marginalization of people with disabilities.

  Successful people with disabilities overcame their disabilities. When the media portrays the problem as the disability, society is not encouraged to change. The biggest barriers exist not in the person, but in the physical, social, and digital environment. People with disabilities and their communities succeed when the community decides to dismantle digital, attitudinal, and physical barriers.

  Flat, one-dimensional portrayals of people with disabilities. Stories that reduce a person to just their disability encourage potential employers, teachers, and other community members to similarly reduce the person to just a disability.

  Victimizing Language. Avoid victimizing language when describing medical conditions and other aspects of the disability experience. E.g., “She is blind” is neutral, but, “She suffers from blindness” encourages pity.

  Jumping through hoops to avoid saying “disability” and related words. Linguistic gymnastics such as “special needs” and “differently abled” perpetuate stigma. We plainly state other human characteristics. We write, “She is a girl,” rather than, “She has a special gender.” The words we use to discuss disability should similarly be straightforward. Tiptoeing around our differences is also more cumbersome. E.g., “He is a person who uses a wheelchair,” compared to “He uses a wheelchair.” Keep it simple and just say “disability” and related words.

  Storytelling Practices

  Spotlight the voices of people with disabilities. Stories about disability have a disturbing pattern of marginalizing disabled voices in favor of the voices of the nondisabled parent, teacher, friend, etc. Practice focusing the story’s attention on the perspective of the disabled person rather than the nondisabled person.

  Avoid assumptions. Many disability myths are so deeply entrenched in our culture that people assume them to be true. Should you use blind, partially sighted, low vision, hard of sight, or legally blind? Ask the person being described rather than making assumptions.

  Challenge yourself to create a disability story without using the word “inspiration.” The overuse of the word, especially for the most trivial things, has dulled its meaning. People sometimes even use the word as a disguise for pity. E.g., “You inspire me to stop complaining about my problems because I should feel grateful I don’t have yours.” Messages that perpetuate us-versus-them hierarchies contribute to marginalization. Engage audiences by moving beyond the inspiration cliche.

  Create Accessible Digital Content

  Digital information that is accessible reaches a larger audience. The Web Content Accessibility Guidelines is a set of technical standards for making websites accessible to people with disabilities. To design accessible mobile apps, refer to the developer accessibility guidelines for iOS and Android. Here are a few things to keep in mind for digital content.

  Videos

  Provide captions so that Deaf individuals can access the audio content.

  Provide audio descriptions so that blind individuals can access the visual content. Audio descriptions are spoken narrations of key visual information that is inserted during pauses in the dialogue.

  Provide a transcript that also includes key visual descriptions. This is particularly helpful for Deafblind viewers.

  Podcasts and Radio

  Provide a transcript to ensure access for Deaf viewers.

  Images

  Provide an image description near the image. The image description should communicate key visual information.

  Articles

  The text of the articles should be machine-readable. Machine-readable text can be read by software used by blind viewers to convert the text to speech or digital braille.

  Resources

  Disability Rights Bar Association, disabilityrights-law.org

  Disability Visibility Project, disabilityvisibilityproject.com

  Haben Girma, habengirma.com

  Helping Educate to Advance the Rights of the Deaf (HEARD), behearddc.org

  Helen Keller Services, helenkeller.org

  Knowbility, know
bility.org

  National Association of the Deaf, nad.org

  National Disability Theatre, nationaldisabilitytheatre.org

  National Federation of the Blind, nfb.org

  Miles Access Skills Training, blindmast.com

  San Francisco’s Lighthouse for the Blind and Visually Impaired, lighthouse-sf.org

  Tactile Communications, tactilecommunications.org

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  Tap here to learn more.

  Photos

  Emperor Haile Selassie honored grandfather Kidane Adgoy for his efforts to free Ethiopia and Eritrea from Italian colonization. My grandfather bows slightly, his gaze respectfully downcast, as he reaches out a hand to receive a small case from the emperor. The emperor and my grandfather are both wearing dark grey suits and solemn expressions. In the background stand eight men in similar dark suits, and two photographers using large press cameras with attached flash bulbs. Copyright Kidane Family Collection.