Barbara Johnson has a story that deserves to be heard. Winner of this year's People Helping People Award from the MIT Federal Credit Union, Johnson has worked with energy, creativity, and humor to educate and improve the day-to-day experiences and long-term prospects for people with hearing loss and other disabilities. While working as an information technology service provider in Information Systems and Technology, she has made MIT more welcoming and inclusive in many ways.
Cochlear implant leads to so much more
In 2012, Johnson had surgery to implant a neuralprosthetic hearing device — a cochlear implant — to communicate directly with her auditory nerve. Johnson had lost her hearing over the course of adulthood, and with minimal residual hearing, she was found to be deaf. The cochlear implant restored a functional level of hearing and allowed Johnson to hear certain sounds for the first time — the scratch of beach sand under her feet, bird calls, rain on leaves. Her delight in interacting with others as she spoke and heard in a new way ignited a spark of advocacy for others with significant hearing loss and ultimately for those with other kinds of disabilities.
Johnson began by sharing information about her deafness with colleagues and those on campus who knew her. She helped them understand the sense of isolation that can occur when you can't hear what's going on.
“As a hard-of-hearing person with a severe loss I’ve been 'hidden,'” she says. “Having grown up as hearing person and fully mainstreamed without any special hearing assistance, my loss has been largely invisible to others. It’s as if I’m on a raft and the sea is very calm. Slowly, slowly but surely I drift farther from shore, where all the hearing people are. I’ve been gradually moving into a sort of hearing limbo, neither fully hearing nor fully deaf.”
Johnson’s efforts to help those around her understand her experiences led several colleagues to disclose that they, too, couldn’t hear well or had other kinds of communication restrictions. They couldn’t fully participate in activities ranging from staff meetings to lunch-table conversations. Johnson researched various amplification devices, transmitters, and receivers for certain kinds of hearing loss. She convinced Information Systems and Technology to routinely use microphones and amplification, with assistive devices on hand for meetings.
Methods that work in smaller spaces aren't suitable for large lecture halls and auditoriums, so Johnson began testing services that provide simultaneous captioning for speeches and lectures. She enlisted support from MIT's Audio Visual Services, which now provides live captioning services for events, as well as for video production.
Educator and guide
Johnson soon extended her reach beyond her department by documenting and presenting her experiences and successfully reaching out to academic circles on campus to support her work.
She is the author of a compelling blog called The Year I Hear: A personal account of hearing loss and one woman’s journey to a cochlear implant. The site, visited by thousands, provides an honest account of all that's involved with a major decision to have surgery with no guaranteed outcome. It also provides an overview of the science behind her sensorineural hearing loss and an introduction to the mechanisms by which cochlear implants work.
To learn more about hearing and deafness and to support research with benefits for public health, Johnson became a test subject for a PhD thesis on cochlear implants. She arranged for the student, Matt Crema, to speak about his work to an undergraduate audience to promote and encourage them to consider research in the same field.
Johnson’s experiences also led her to become an invited guest for the MIT course 6.S196 (Principles and Practice of Assistive Technology). She spoke to the challenges of hearing loss and discussed the kinds of tools and services that student “makers” could explore to improve assistive technology.
This spring, Johnson enlisted several departments and organizations, including MIT Global Studies and Languages, to fund the campus presentation of a five-part lecture series called "American Sign Language and Deaf Culture." Johnson was able to recruit the Massachusetts statewide coordinator for deaf and hard of hearing people as the primary instructor for the class. Given the strong interest in the series, discussions are now under way about presenting this material in a for-credit course.
Benefits of diversity
Johnson has promoted broader understanding of disabilities through her membership on the Institute's Council on Staff Diversity and Inclusion. This advisory body is charged with encouraging and informing efforts to use the diversity of staff to advance MIT’s work.
The group is responsible for the annual MIT Diversity Summit, and with Johnson’s input and participation, the program track now offers components related to disability and inclusion. One of the issues she pointed out is that many who are hard-of-hearing don’t communicate through American Sign Language, so sign language interpretation is a remedy for only some forms of deafness. For others, captioning or other assistive technology is most effective.
This year, a Diversity Summit session called "Inclusive Communication and Event Planning" looked at aspects that often arise in on-campus events, such as physical access to spaces, the use of sound systems and live captioning, and above all, the awareness that not everyone communicates in the same way.
Johnson also actively lobbies for the delivery of accessible courseware. As an increasing number of MIT classes are migrated to online platforms such as MITx and edX, creators must be mindful of the needs of audiences of all kinds. Johnson has evaluated popular tools such as YouTube for delivery of online content with captions and can advise on the suitability of these products for adding captions to videos.
Informally, Johnson has befriended and supported several undergraduate students who have hearing loss. She has helped them understand the kinds of accommodation they may be able to receive in accordance with the Americans with Disabilities Act. She's coached them to explain their needs more clearly, and demonstrated ways for them to navigate through bureaucracy. Her mentorship is teaching young people to become advocates for themselves and others like them, in order to realize a full educational experience. This work also encourages MIT to expand its recognition of the forms of diversity among its students, and the ways in which that enriches the learning experience for everyone in the campus community.
Public service, public spaces
Johnson is intent on making MIT’s public spaces accessible to those with hearing loss. She seeks affordable, portable, scalable technology options that she can test, assess, and review for others. She is one of the only individuals on campus with a captioning phone, which displays every word the caller says throughout the conversation. She makes time for others to try out this phone and other equipment that may prove useful.
At Johnson’s initiative, MIT Commencement now offers assistive technology in the form of portable tablets for viewing a captioned version of the exercises. For the first time, those with auditory limitations can be seated anywhere on Killian Court and follow the proceedings, rather than missing the details of the day and the proud moment at which their graduate’s name is pronounced.
Johnson’s advocacy for those with hearing loss and other disabilities has grown beyond MIT. She’s been trained as an assistive technology volunteer advocate through a program offered by the Hearing Loss Association of America. She has reached out to online video giants such as Hulu, YouTube, and Vimeo, suggesting that they include tools for captioning their lineup. She has rallied for crowd-sourced captioning with the likes of Coursera and Khan Academy, which now provide subtitles for thousands of free online classes.
Johnson’s efforts to expand disability awareness and promote viable solutions are extraordinary. She has brought an important message to ever-wider circles and to an expanding group of beneficiaries. She has taken a personal experience and made it a channel for advocacy and service to a community she could not have imagined reaching three years ago, when she first decided to let others know she had become deaf.