Why Haben is a must read/listen

binarycode.jpg

Image description: Close-up of colourful binary code

Image description: Close-up of colourful binary code. Source: Photo by Markus Spiske on Unsplash

“You could say, ‘Hi, may I introduce you to Haben? She’d like to meet you.’ If he says yes, then explain to him, ‘She’s Deafblind and uses a keyboard and braille computer. Come on over and I’ll show you.’ You can gesture to the table.” - Haben: The Deafblind woman who conquered Harvard Law.

It was a wonderful day on disability Twitter - a curated space of disability and deaf aware handles that I enjoy hanging out in - when someone posted a tweet about Haben’s piece on guide dogs. Her wit, her insight and language made me super inquisitive and therefore I immediately did some research about her book Haben, which had released just that day. On finding out that Haben had read out the entire book on audible, I quickly purchased the book.

The book is part memoir, part lessons in accessibility. She speaks to how technology when used well changes lives, especially those of disabled folk.

The book is part memoir, part lessons in accessibility . She speaks to how technology when used well changes lives, especially those of disabled folk.

Deafblind persons have specific needs but most of them fall on a spectrum of hearing and vision loss. Like Haben says, she likes her Deafblind world. "It’s comfortable, familiar. It doesn’t feel small or limited. It’s all I’ve known; it’s my normal."

However she is acutely aware as she makes her way through school and college and that she is part of "a sighted, hearing classroom, in a sighted hearing school, in a sighted, hearing society. In this environment, I am disabled. They place the burden on me to step out of my world and reach into theirs."

Deafblind persons communicate in a myriad of ways. Tactile sign language, braille, text messaging are just a few ways. Haben says in many interviews and talks that she identifies as Deafblind for a reason: "By identifying as Deafblind, I'm telling the world that I'm part of a community where knowledge gained through touch is equal in value to knowledge gained through sight, sound, or other means. Our world is incredibly diverse, and when we design apps, that celebrate that diversity, and recognize that diversity, we all benefit. So I identify as Deafblind to tell the world to design non-visual access, and non-auditory access to help maximize communication. This is tricky for some people."

By identifying as Deafblind, I'm telling the world that I'm part of a community where knowledge gained through touch is equal in value to knowledge gained through sight, sound, or other means

Much of her school life is made accessible because of a team that understands accessibility and converts all her reading material to braille. However, she finds herself flunking a paper because the professor wrote a set of assignments on the board - which she couldn’t see as she was blind - and read out the assignments from the back of the class - which was out of her hearing range. Making the extra effort to be part of a class and not miss anything is a huge pressure.

While studying at Lewis and Clark, she was given access to books, reading material, libraries and exams in braille. She acknowledges that this isn’t true for most of the USA, let alone the world. During her time in Lewis and Clark, she began advocating for herself. She tells a story of cafeterias, food and access which is at the core of how many of us see access. She questions if demanding the cafeteria staff send her the menu via email is “asking for too much” or “frivolous”. (Watch her tell this story in her TedTalk)

Haben is then faced with a situation where she sometimes receives the menu in her email - or she doesn’t receive the menu in her email and she is surprised by what appears in her plate by standing in a random line. She is forced to remind herself that access to the menu is a right and not a privilege. She challenges the cafeteria staff that making the menu accessible to her is part of their obligation to the Americans With Disabilities Act (ADA). Only after that, does she receive the menu in her inbox. This realisation of shifting access from a charity-based approach to a rights-based one reminds her that she has paved the way for many blind students who would go to college later. For all of us, it is a reminder of how technology can aid access for people with disabilities but that the empathy needed is still a human trait.

For all of us, it is a reminder of how technology can aid access for people with disabilities but that the empathy needed is still a human trait.

While in college, Haben developed a text-to-braille communication system that created a new way for her to connect with people. An assistant transcribes the audio input real time and she can communicate with the person through braille. One of the most charming interactions with this text-to-braille communication system she built is between her and the former president of the United States, Barack Obama.  She playfully teases him for his typos and using two fingers to type. As someone who loved every bit of Haben, it is her wit and humour that is present in most interactions that is at the heart of why this book is phenomenal.

After constantly pushing her own boundaries and joining Harvard, Haben strives to ensure accessibility at every step of the way. There is a hilarious story in the book where she is drinking lemonade at a bar with her Bluetooth keyboard and her seeing-eye dog, Maxine after semester exams where her friend asks her quizzically, “Are you drinking lemonade?” To which she replies in her classic style, “I am already deafblind. I don’t want to be deafblind and drunk.” At the end of this story, she finds herself and Maxine guiding her friend who is drunk back to his dorm room. In a way, this act reminds her that being deafblind doesn’t limit her capabilities. Throughout the book, we see her test these limits often set by society when she climbs a glacier, when she builds a school in Mali and when she searches for opportunities to assert her abilities, in a disabling world.

The biggest yay moment of the book comes when Haben begins the lawsuit to challenge Scribd’s inaccessible online library. Her confidence soars; she articulates herself and learns her own strengths when she writes what she calls the best brief of her life. She argues that online libraries are a place and places need to be accessible according to ADA. She puts forth the thought that making content accessible and putting accessibility at the core of our efforts online and on-ground - makes a difference.

She went from advocating for herself to advocating for systems, websites and companies to become accessible to people with disabilities. She says in her book: “Inaccessible websites and apps accelerate the information famine. People who have visual disabilities, dyslexia, and other print-reading disabilities face economic hardships spurred by the lack of access to job applications, health notices, government forms and educational materials. Technology has the potential to remove barriers, but developers keep designing inaccessible digital services.”

Reading her book reminded me of the long fight we have for accessibility across the world but the fight for accessibility shouldn’t be restricted only to people with disabilities. Designing with disability in mind - instead of accommodating disability - makes all the difference. Everywhere now, we have guidelines that tell us how to make our spaces more accessible. The Web Content Accessibility guidelines, the Android Accessibility guidelines, the Apple accessibility guidelines are among many. I would like to end with the quote in her chapter about the lawsuit against Scribd: “Computer programs start as 1’s and 0’s. Developers have the power to convert those 1’s and 0’s into engaging applications that everyone can access.”

So the question we as technology-loving feminists need to ask ourselves is - Are the spaces we are building accessible? If not, how can we fix this?

Computer programs start as 1’s and 0’s. Developers have the power to convert those 1’s and 0’s into engaging applications that everyone can access.