What advice do you have for journalists writing about people with disabilities?
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. For example, “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.
Harmful Messages We Should Avoid:
Non-disabled 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 a disabled person encourages potential employers, teachers, and other community members to similarly reduce the person to just a disability. We are all diverse and participate in multiple communities, and flat stories actually make it harder to participate in many communities.
Great Messages We Should Send:
We respect and admire disabled leaders, just as we respect and admire our non-disabled 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 each other.
Why should organizations ensure access for people with disabilities?
Prioritizing inclusion helps your organization. People with disabilities represent the largest minority group, numbering one billion worldwide. Reaching a group of this scale creates value for everyone. Organizations that prioritize accessibility benefit by gaining access to a much larger user base, improving the experience for both disabled and non-disabled users, and facilitating further innovation. Organizations also have legal obligations to ensure access for people with disabilities.
What can organizations do to become more inclusive?
Numerous economic and social barriers currently exist for people with disabilities. A study by the United Nations found that about 97% of websites have access barriers. These digital barriers create an information famine, limiting employment and educational opportunities for people with disabilities around the world. Technology exists to render digital information accessible. Blind individuals use software called screen readers that allow the content of websites, apps, and documents to be read aloud or displayed in Braille on a connected Braille device. Captioning on videos provides Deaf viewers access to audio content. Programming for accessibility allows a greater number of people to access your videos, webpages, articles, apps, and other information.
Guidelines exist to help you make your information accessible. The Web Content Accessibility Guidelines 2.0 is a set of technical standards for making websites accessible to people with disabilities. To design accessible mobile apps, refer to the iOS and Android accessibility guidelines for developers. Programming for accessibility generally does not change the appearance of websites and apps. The Americans with Disabilities Act forgives those companies for whom accessibility changes would amount to an undue burden. The ADA balances all interests, ensuring creativity in the tech industry while protecting access for Americans with disabilities.
Organizations should work to create inclusive environments where all members can contribute their talents. Including disability in diversity training, increasing recruitment of members with disabilities, removing architectural barriers, communication barriers, and digital barriers will help your organization move in the right direction.
Why did you decide to become a disability rights lawyer?
As a Deafblind student in college, I witnessed advocates using the Americans with Disabilities Act (ADA) to change social attitudes. The National Federation of the Blind regularly referenced the ADA when explaining to technology developers why designing access for people with disabilities is a necessity and not some optional cherry atop the Silicon Valley sundaes. I heard how the National Association of the Deaf used the ADA to increase closed-captioning online, and how Disability Rights Advocates used the ADA to compel Target’s tech team to make target.com accessible to blind Americans.
Impressed by the success of these advocates, I felt inspired to join them. Back then, and even now, I encountered many barriers in the digital world. Not because of my disability, but because of attitudes among tech developers that trivialize access for people with disabilities.
What advice would you give to someone who aspires to go into advocacy?
It’s really important to spend time with the community you serve. Strong advocates understand the needs of their communities and have the advocacy skills to communicate those needs to others.
How do you pronounce your name?
Haben (Ha like ha-ha and ben like Benjamin) Girma (Gir like girl and ma like Karma).
I am so confused. Ethiopians say you are Ethiopian. Eritreans say you are Eritrean. What in the world are you?
It’s complicated, I know. Many find my background confusing. I’m an African American, first generation immigrant. My father grew up in Ethiopia. My mother is a refugee from Eritrea, a small country that struggled for independence from Ethiopia for 30 years. Having family from both sides of that tricky border taught me to perceive the complexities hidden in conflicts.
Have you ever won a legal case?
Of course! I represented the National Federation of the Blind in a lawsuit seeking to get the digital library Scribd to make its services accessible. Because of the design of the Scribd website and apps, blind readers could not access many of the books and documents. Scribd argued that it didn’t have to make its services accessible, claiming the ADA doesn’t apply to websites and apps. Disagreeing with Scribd, the Court ruled in our favor. “Now that the internet plays such a critical role in the personal and professional lives of Americans, excluding disabled persons from access to covered entities that use it as their principal means of reaching the public would defeat the purpose of this important civil rights legislation,” the Court wrote. Scribd soon agreed to make its digital library accessible. Working on this groundbreaking case to help blind readers gain access to books was one of the most rewarding moments in my legal career. You can read the full court decision here: NFB v. Scribd.
In 2016 I stopped litigating cases to focus instead on educating organizations on the benefits of choosing to practice inclusion.
You’re just like Helen Keller! What do you think of her?
When people tried to force her as a role model on me, I couldn’t stand her. I didn’t want to read about Helen, talk about Helen, or even think about Helen. People pressured me to be just like her. What about being me? When I reached college, I finally took the time to learn about Helen on my own terms. Reading about her work, I felt so much admiration and respect.
The danger of a single disability story is that the public expects people to conform to that story. My story is one more story from which the public can learn, and I hope having more disability stories will get people to stop saying, “You should be just like ‘X.’” We all deserve the opportunity to develop our own unique talents and interests. It’s not fair to tell someone, “You should learn to surf because Haben surfs.” Such statements pressure people to conform to a single story, a single set of expectations. That’s incredibly limiting.
Forcing role models on people doesn’t work. Instead, take the time to listen to the dreams of your friends and help them find ways to transform them into reality.
What’s your favorite book?
Tiny Beautiful Things, by Cheryl Strayed. Cheryl has a powerful and beautiful writing style that I really enjoy.
Where can special education professionals learn more about your experiences at school?
My experiences in K-12 and beyond are described here.
How did you learn to speak when you’re Deafblind?
Deafblindness encompasses a wide variety of different types of hearing loss. I have some hearing in the high frequencies and trained myself to speak in a higher voice. Hundreds of experiences on stage, from theatre classes to TEDx, have helped me master the art of public speaking. Most recently, Penny Kreitzer is a phenomenal voice coach who helped me prepare for my remarks at the White House.
How did you overcome your disability?
Actually, disability is not something one overcomes. Stories that claim successful people with disabilities overcame their disabilities mislead the public. The 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. My success at school, in the office, and even on the dance floor were facilitated by communities that chose to practice inclusion.
How do you communicate with people?
How I communicate with someone depends on the skills we share. Written English is my strongest form of communication, so if the person I am communicating with knows written English and can type, that’s what we’ll do. The person types on a wireless keyboard that outputs to a braille display. I read as the person types. If the person understands spoken English, then I’ll voice my end of the conversation. Depending on the person’s abilities, i may use sign language, type text, voice in another language, or work with an interpreter.
Adapting to the abilities of others and the restraints of the environment are essential to communication. My guide dog, unable to use spoken English, will nudge my hand with her nose to request my attention. Experience has allowed me to learn to read her signals. Salsa dancers, unable to type while dancing, convey music and motion through their hands. Learning the language of salsa and other partner dances has placed me within a community that communicates joy through movement and music. Whether through movement, written words, spoken words, or other cultural symbols people connect when they search for shared symbols and adapt to each others’ abilities.
What do you fear?
I fear fear’s power. Fear fuels all the injustice in our world. Fear stands behind all the pain experienced by those marked as “others” by a majority group. Fear freezes compassion that would otherwise build bridges between all our unique lives. Pushing aside fear, I celebrate the growing number of people who recognize our shared humanity.
What’s your favorite Disney movie? Oh, wait, can you watch movies?
With Aladdin and The Little Mermaid nearly tied, that’s a tough question! Both portray strong women who refuse to submit to social expectations, pursuing their passions and ultimately creating unique lives for themselves. Their co-stars similarly portray the persistent pursuit of a dream in the face of social pressures. In addition to sailing his own ship, figuratively and literally, Prince Eric gracefully learns to communicate outside his comfort zone. Through nonverbal communication, Eric and Ariel develop a beautiful relationship. Okay, The Little Mermaid wins.
I access movies by reading the screenplays, which have written dialog and visual descriptions. Since movies hold a central place in our culture, I try to read the screenplays of all the major ones.
Is there anything you can’t do?
I can’t cartwheel. Every now and then I will experience a moment of pure joy and wish I could leap into the air and gracefully glide my feet over my head, but I can’t… I try to channel that joy into an expressive, “Yay!” It’s just not the same. Back in middle school I confided to one of my teacher’s that i wished I could cartwheel. She generously set aside time to show me the movements, but I still couldn’t do it. I know that I could probably conquer the cartwheel if I hired a personal gymnastics trainer and devoted serious time to training, but I have chosen to use my time to pursue other goals: advocacy, dance, and writing. While time, training, and creativity will lead us to our goals, I prefer to prioritize some goals over others.
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