What is the color of disability? Just as we are cautioned against viewing the world in terms of black and white, all disabilities are varied tones of gray. Haben Girma, author of the memoir, Haben, shows us what being deafblind really means.
Many tend to see deafness as a total loss of hearing, living in a silent vacuum; likewise, blindness is seen as a complete loss of vision, living in a dark, black abyss. These are all-to-common views of disability. We would be amiss (remiss?) to ascribe to these limited definitions. In fact, a majority of disabilities are invisible. Absent visual clues like a white cane or cochlear implant, we are none the wiser to others lifelong struggles.
Haben opens her memoir with a memory from her childhood. She is on an airplane with her Ethopian father; they are in Addis Ababa and still at the gate. Two men in uniforms walk onto the plane and take her father away. She is seven-years-old, was born and raised in California, and has a field of vision of five feet. Most words, to her ear, sound like the someone who has marbles in his mouth.
Haben spends her summers in her father’s homeland, so she gets a glimpse of war between rival territories and is steeped in the stories of her parent’s upbringing. After facing abandonment at seven, very little deterred her. From waving a bright red sweater to taunt an actual bull with her friends to navigating an Alaskan iceberg on foot, her formative years are critical to the fierce tenacity she carries into adulthood.
In high school, Haben goes to Mali with a service group to build a school. In college, she masters a woodworking class, develops a text-to-braille system, and learns she has rights as a deafblind person. When the college cafeteria staff half-heartedly hear her request to have the daily menu mailed to her, she finds her voice and begins navigating her self-advocacy journey.
The cafeteria menu struggle showed Haben her path, and she applied to Harvard Law School. “My advocacy affects our entire community. The changes I worked for create greater access for me and future blind students … I remember wondering if my access to the menus was really worth all the time and energy needed to achieve that success. For a while, I thought maybe I had to just tolerate the situation. Running away from the problem doesn’t make it go away, though. … That problem might have followed me through all four years of college if I hadn’t stood my ground.”
Haben sets the bar high for herself as well as for other disabled people. She is a fierce advocate for disability rights, and expects others to do the same. True change won’t ever happen without brave people who speak up and out about broken systems. She turned what could be viewed as a crutch into a megaphone, and that has made the world a better place for all.
Anyone with a curiosity about successfully navigating the world with a disability should add this title to their reading list. Haben is an easy-to-read memoir full of reality and humor, that takes the reader on a trip through daily life challenges in an ever-changing world.