Haben

Haben Girma was born Deafblind, a condition that encompasses a spectrum of vision and hearing loss. At age 12, she could see the indistinct outline of a person on a couch; by adulthood, entering a room felt "like stepping into an abstract painting of fuzzy formations and colorful splashes" (1). Her hearing followed a similar trajectory, shrinking over time to a narrow sliver of high-frequency sound. Her memoir traces her journey from childhood through her career as a disability rights lawyer, organized as a series of episodes set in the United States, Eritrea, and West Africa.

The memoir opens in 1995, when seven-year-old Haben sat on a plane in Addis Ababa, Ethiopia, as two uniformed men escorted her father, Girma, off the aircraft. She was terrified, unable to navigate the world alone or contact her mother, Saba. Girma's father, Grandpa Kidane, was Eritrean, and during the 30-year war between Ethiopia and Eritrea, Eritreans living in Ethiopia became targets. Girma managed to return before the plane departed, but the experience taught Haben that nothing could fully shield her from violence.

At 12, attending middle school in Oakland, California, Haben discovered she was failing a history class because the teacher sometimes announced homework from the back of the room, outside her hearing range. Her blindness teacher, Ms. Scott, helped resolve the situation, but Haben absorbed a harder lesson: Succeeding in a world designed for sighted, hearing people required her to actively pursue every piece of information.

During a family reunion in Asmara, the capital of Eritrea, her parents shared their histories. Saba recounted how Ethiopian soldiers jailed her school group for refusing to sing anti-Eritrean songs. At 18, Saba fled with refugees, walking only at night for three weeks through combat zones. Nearly everyone contracted malaria, and one girl died. The Catholic Church eventually brought Saba to the United States. Girma left Ethiopia for California with only $200 and struggled with loneliness. Haben draws parallels between her parents' resilience and her own determination to navigate a world not built for her.

At 15, Haben attended Enchanted Hills Camp for blind youth in Napa, California, where a blind professional dancer named Denise Vancil taught salsa. Dancing with a partner, Haben discovered she could feel the musical beat through his hands even though she could not hear it, a phenomenon she calls "tactile intelligence."

Back in Oakland, Haben persuaded her protective parents to let her travel to Mali with her high school's buildOn club to help construct a school. In spring 2004, she arrived in Kegne Village in southern Mali, where she sifted sand, made bricks, and communicated through gesture and touch. She played Go Fish with village children using numbers from Bambara, a local Malian language, and served as the group's "water boss." Surveying the school's foundations, she felt a surge of confidence: A Deafblind teenager from Oakland had made a tangible impact.

After graduating high school as valedictorian, Haben spent the summer of 2006 at the Louisiana Center for the Blind (LCB), an intensive program where students wore sleepshades, eye masks that block all light, to master nonvisual techniques. A friend named Bruce, a leader in the National Federation of the Blind, advised her that confidence comes from within, not from a guide dog. The center's director, Pam, led seminars on ableism and taught a core philosophy: Blindness is nothing more than a lack of sight, and with the right tools, blind people can compete as equals.

Haben entered Lewis & Clark College in Portland, Oregon, in fall 2006. Her roommate Carrie excluded her from activities, claiming she would feel responsible if Haben got hurt. The cafeteria proved another barrier: The print menu was inaccessible, and noise prevented Haben from hearing anyone. She found community with Gordon, a freshman from Southeast Alaska, who recognized and named the ableism Haben experienced. When the cafeteria manager refused to provide accessible menus, Haben invoked the Americans with Disabilities Act (ADA), the landmark 1990 civil rights law prohibiting discrimination against people with disabilities, and threatened legal action. The manager apologized and committed to consistent accessible menus. Haben began researching law schools.

In summer 2008, Haben flew to Juneau, Alaska, for a tour guide job but was dismissed on her first day after arriving with a white cane. Over weeks of rejections, she confronted the reality that around 70 percent of blind Americans are unemployed, a statistic driven by cultural assumptions about disability. The following summer, she trained with Maxine, a small German shepherd, at The Seeing Eye in Morristown, New Jersey. After a rocky start, Maxine proved an elegant guide. During a winter visit to Alaska, Haben climbed an iceberg, and when Maxine followed her up uninvited, Haben realized her worry about the dog mirrored her parents' worry about her.

In fall 2010, Haben entered Harvard Law School as its first Deafblind student. The school hired American Sign Language (ASL) interpreters to whisper lecture content into an FM microphone connected to her earbuds, but the system often rendered words unintelligible. When classmate Liqin typed a message on Haben's BrailleNote, a computer with a tactile braille display, the exchange sparked an idea. Haben paired a portable Bluetooth keyboard with her braille computer, creating a system that allowed anyone to type messages appearing instantly in braille. The keyboard transformed her social life, enabling conversations in noisy environments for the first time. Over three years, she earned honors and won a Skadden Fellowship to work at Disability Rights Advocates, a nonprofit law firm in Berkeley.

At Disability Rights Advocates, Haben received complaints from blind people unable to access Scribd, a digital library of over 40 million documents. Scribd's platform blocked screenreaders, the software that converts visual information to speech or digital braille. After Scribd ignored invitations to collaborate, Haben's team, led by veteran attorney Daniel Goldstein, filed suit. Scribd argued the ADA covered only physical locations. At oral arguments in the U.S. District Court in Burlington, Vermont, Goldstein argued that the word "place" in the ADA was descriptive rather than restrictive. Judge William K. Sessions III ruled that excluding disabled people from online services would "defeat the purpose of this important civil rights legislation" (246). The decision was the first in the Second Circuit to establish this precedent, and Scribd settled.

In summer 2015, Haben introduced President Obama at the White House celebration of the ADA's 25th anniversary. In the Blue Room, Obama typed a message on Haben's keyboard, admitting he typed with two fingers. He told her he was proud of her leadership, then initiated a hug because, as he typed, "I couldn't type a hug" (261). Haben delivered her speech from the podium, telling the audience how her grandmother had been told Deafblind children could not attend school in East Africa, and contrasting that with her own admission to Harvard. She credited the ADA and the advocates who won its passage.

After the Scribd case, Haben shifted from litigation to education-based advocacy, launching her own consulting, writing, and public speaking business in 2016. Maxine died of cancer on April 16, 2018, after nine years together. Haben returned to The Seeing Eye and trained with Mylo, a new German shepherd. Gordon, who had remained a close friend since college, learned to cook Saba's Eritrean recipes. Haben closes her memoir by affirming that disability is not something an individual overcomes: The biggest barriers are social, physical, and digital, and communities must choose inclusion.