I did something for the first time on the evening of April 11: communicate with a deaf-blind person.
Using a keyboard presented during the evening’s lecture on “Disability & Innovation: The Universal Benefits of Inclusion” at Fordham University in the Bronx, I became a part of a world where I, an individual without a disability, can have meaningful connections with individuals who do have disabilities like the evening’s lecturer Haben Girma and the other 1.3 billion living in the world.
As the first deaf-blind person to graduate from Harvard Law, Haben’s work as a self and legal advocate earned her the title of White House Champion of Change from the 44th U.S. President Barack Obama in 2015. She has also been featured in Forbes Magazine’s 30 Under 30.
During Haben’s opening remarks, she spoke about a journey that her mother, my mother, my friend’s mother–sitting next to me in the audience–and many other mothers from Eritrea made during a heightened time of migration during the Horn of African nation’s 30-year fight for independence.
I learned Haben’s mother walked north of Eritrea to Sudan for roughly two weeks to escape violence and martyrdom. Like our parents, she wanted a brighter future than the one she saw back home.
As we heard our stories being unveiled on the podium by Haben whose first name, like ours, Ariam and Miriam (depending on pronunciation) is indistinguishably Eritrean and a marker of our hybrid identifies as Americans and Eritreans in the diaspora, the sister-friend and I nodded in recognition.
Live tweets from @Ariam_Alula were sent out and hash tagged #disabilitiesandinclusion. In expected millennial fashion, I wanted to capture snapshots of the lecture for personal record keeping. One tweet I hoped would proliferate my mind and those of my 600+ followers highlighted stigma.
“In our culture disabilities are seen as a curse,” Haben said.
This reverberated a key principle that I, as a diaspora kid and sibling of a person with disabilities, have noticed in our community. Language.
In the article “Producing Positive Disability Stories: A Brief Guide” posted on Haben’s website, the author challenges the way individuals without disabilities refer to those with disabilities everyday life.
The semantics of words such as “special needs” and “differently-abled”, or what Haben called “linguistics gymnastics” aid the belief that individuals with disabilities are separate from non-disabled individuals and this kind of language moves the group away from inclusion.
In the article she goes on to say: “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.”
Using person-first language, I think, is a happy medium when referring to individuals with disabilities. An example reflecting this belief is how I tell others about my brother. Rather than stating Daniel is autistic, which will introduce his main disability before introducing himself.
I prefer to say Daniel is my brother and uses words, phrases and gestures to communicate. Daniel is a man-boy who has autism.
My work as a Partner in a national network for self-advocates with disabilities and their family members called Partners in Policymaking reinforces the belief that individuals have the right to practice agency in how they’d like to be introduced
I also say this knowing Daniel would introduce himself as “Helo. I’m polis offica Daniel Frennnzy.”
Haben revealed she dances salsa which is something I bet the audience was surprised to learn. I know I was surprised at least.
“People make assumptions about individuals with disabilities all the time,” she said. “I enjoy dancing salsa because the beats help me stay on rhythm.”
An incident when Haben believed she experienced discrimination was the time her service dog couldn’t be allowed in the dance studio. As a deaf-blind person, keeping her dog out of the studio did a disservice to Haben’s experience dancing.
I thought of the times where I felt others had made assumptions about Daniel. Like the time we hopped in the back seat of a car for an appointment and the driver wanted to put on Daniel’s seatbelt for him before pulling off. Or the time when a young guard wanted his friend to hand my brother a cookie that he’d been eyeing without asking him if he wanted a cookie to begin with. I said something to each individual during these encounters.
“Daniel can fasten his seatbelt,” I told the driver. “Daniel can ask for a cookie,” I told the friends.
These behaviors are rooted in ableism which is the belief that an individual with a disability is less capable of doing what non-disabled individuals do.
Enabling behaviors, while often done with well intentions, sicken me. It does not help the individual with a disability receive appropriate help (if help is needed) in the least restrictive way which may hinder an individual from achieving his/her maximum potential.
Despite having disabilities, being a woman and Black in a systematically racist country, Haben has achieved things that only some may dream of doing before the age of 30. And her greatness showed up in a hotel room in China in 2013.
“I wanted to know what [this] is,” she said about her trip to the country’s capital Beijing.
“What am I holding? I wonder if I could taste it,” she said, with the unknown object in her hand.
Haben used her phone to take a picture of the object. The following slide showed a picture of a commonly eaten cactus fruit in China and Taiwan called dragon fruit.
“This wasn’t a special phone; this is an app you can find on an iPhone.”
Haben spoke in greater length about assistive technology ideal for individuals with disabilities to use. Meanwhile the lecture accommodated all audience members with American Sign Language interpreters and a screenreader transcribing Haben’s remarks in real-time in front of the podium.
She played a sample of a text-to-voice reading showing how individuals who are deaf can access news.
Sidenote: Individuals with disabilities who are interested in traveling and need accommodations can do so at the time of booking. Please view this link to learn more about the different kind of accommodations a traveler can request.
Communicating Through a Keyboard
I came with a script prepared to speak to Haben not realizing that conversations in person are never scripted.
Haben reads as fast as I type which is 79 words per minute.
Ariam: I’m Ariam Alu…
Haben: Ah, are you Habesha?
Ariam: I’m Eritrean actually.
Haben: Okay, wow, are you a student at Fordham?
Ariam: No, I’m going to be joining the social journalism program at CUNY Graduate School of Journalism in August.
Haben: Cool, are you a journalist?
Ariam: yes, I enjoy learning about different places and people hence why I travel.
Haben: Yeah, of course, me too.
I told Haben a little about my advocacy work for Daniel.
“Transportation is one of the greatest barriers for people with disabilities,” I typed. In 2015, I applied for Daniel to receive a free door to door service to help him get around to appointments without having to rely on my father.
Haben: yes, paratransit. I know it. Does he like it?
Ariam: yes, he does. we still use it today.
I shared my feelings about ableism showing up in different ways in our community, and her advice on how I could inform people about services.
“You can tell people through journalism.”
Currently, as a Partner in PIP, I’m developing a campaign for more papers (brochures, flyers, pamphlets, etc.) to appear on the boards of New York Public Libraries across the 87-branch inter loan library system.
After my fingers broke away from the keyboard, Haben’s hands were curled in a cup shape which she embraced in mine. This handshake is more intimate than the handshakes typically given in America; it reminds me of the handshakes I use when greeting people in Eritrea.