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A Fellow and Mentor Team Up to Tell New Kinds of Stories
October 14, 2021
Julie-Marie Chibekete wants to learn from others. It’s one of the many reasons that she applied to be a fellow with the Disability Justice Project (DJP). As a disability rights advocate in Malawi, Chibekete is looking forward to connecting with other DJP fellows and with her mentor. She wants to gain knowledge that will help support her work. “I want to see how people are implementing things in other countries,” she says. Her mentor, Rahul Bhargava, an assistant professor in Northeastern University’s College of Arts, Media, and Design, is hoping for the same. “I’m interested in meeting someone interesting, but also being exposed to a different way of seeing,” he says.
Chibekete is from Malawi, where she received her Bachelor of Arts degree from Chancellor College: University of Malawi. She studied theatre for development and drama before pursuing her Master of Science in transformative community development at Mzuzu University. In 2018, she was involved in a car accident that resulted in a permanent spine injury and a broken vertebra. Her doctor referred her to the Spinal Injuries Association of Malawi (SIAM), where she connected with other spinal injury survivors. Soon, she began peer mentoring and advocating for SIAM. Today, she facilitates survivor support groups and is part of a task force reevaluating SIAM’s strategic priorities for the next few years. “We’re trying to strategize so that we can support more people,” she says. “We are trying to voice our concerns that we as disabled people have and demand our rights to the authorities…We are humans, too.”
Chibekete is a go-getter who wants to enact change in her country – and for the members of SIAM. She’s hoping to learn skills pertaining to data and digital storytelling to bring awareness to her organization. She wants to focus on accessibility rights for those with spinal injuries and to lobby the Malawian government to support those efforts. Her mentor, Bhargava, knows a little something about data storytelling as a civic engagement tool. His first exposure to data storytelling for change was through his wife, Emily Bhargava. She is the director of the Connection Lab, which takes a participatory approach to health promotion and data literacy. Rahul was tasked with taking data from different groups in the public health sector and translating that into more digestible formats for the general population. Using more than just scatter plots, he led a training on data storytelling and hasn’t looked back.
With a background in data education and literacy, Bhargava is focused on creating ways of communicating data, like a budget report prepared for the US Senate, in more understandable and engaging ways. Rather than showing an overwhelming amount of statistics on a white page, he uses his eye for design to craft numbers into a story that people will want to read and, eventually, understand: “We have to be sure that subsets of the population can speak the language of data. Otherwise, it’s a disempowering democratic process. I got excited and interested in the idea of helping people with data and power communicate in more natural ways, especially in civic domains, such as government.”
In addition to his background in education and technology, Bhargava is motivated by public interest journalism and is excited to bring that work to the Disability Justice Project. He wants to support fellows, especially Chibekete, to use the technical skills they gain for their causes, as power and representation are at the core of his own journalistic endeavors. “If you can tell a strong story, that’s a super powerful life skill for anybody…no matter what domain you’re in, no matter what your abilities are,” he says. “And that takes you places.”
News From the Global Frontlines of Disability Justice
Voices Unsilenced
Often dismissed as a personal concern, mental health is a societal issue, according to Srijana KC, who works as a psychosocial counselor for the Nepali organization KOSHISH. KC’s own history includes a seizure disorder, which resulted in mental health challenges. She faced prejudice in both educational settings and the workplace, which pushed her towards becoming a street vendor to afford her medications. Now with KOSHISH, she coordinates peer support gatherings in different parts of Nepal. “It is crucial to instill hope in society, recognizing that individuals with psychosocial disabilities can significantly contribute,” she says.
Capturing Vision Through Sound and Touch
Last summer, the DJP trained Indigenous activists with disabilities from the Pacific on the iPhone camera to create a documentary series on disability and climate change. With VoiceOver, the iPhone provides image descriptions for blind and low-vision filmmakers and offers other accessible features. “If you think about it, it doesn’t make sense for a blind person to use a camera,” says DJP filmmaker Ari Hazelman. “The iPhone gives you more avenues to tell your story in a more profound way as a blind person.”
Beyond the Frame
DJP mentor Kishor Sharma is known for his long-term photography and film projects exploring community and change. Over the last 12 years, he has been documenting the nomadic Raute people in mountainous Nepal. With any project, Sharma aims to actively engage participants, sharing photography and videography techniques. In September, Sharma became a mentor to DJP Fellow Chhitup Lama. He was eager to connect “this idea of sharing the visual technique with the storytelling idea and the issue of disability inclusion.”
‘I Am Left With Nothing’
Recent flooding in Rwanda has left many persons with disabilities without homes and jobs. “Sincerely speaking, I [am] left with nothing,” says Theophile Nzigiyimana, who considers himself lucky to have escaped the flooding. The flooding demonstrates the disproportionate impacts that disasters have on persons with disabilities, which will only intensify as climate change continues.
‘Leadership Training is a Key Focus’
DJP Fellow Sita Sah interviews Neera Adhikari about starting the Blind Women Association Nepal (BWAN) and the steps BWAN has taken to advance the rights of Nepali women who are blind and low-vision. Women with disabilities, particularly those living in rural areas, “face discrimination from family and society which prevents them from venturing outside their homes,” says Adhikari. “In a household where there are two children, one disabled son and one daughter, societal beliefs often favor sending the son to school while neglecting the daughter’s education.”
Accessible Instruction
Nepal has between 250,000 and one million Deaf people, but most do not attend school. In many schools for Deaf individuals, education ends at 10th grade, and higher education is rarely available and often inadequate. DJP Fellow Bishwamitra Bhitrakoti interviews Satya Devi Wagle from the National Federation of the Deaf Nepal about the strategies, challenges and successes of her work on inclusive education. “Because hearing teachers are not competent in sign language, there is no quality instruction in a resource class in Nepal,” she says. “We are working … to create a Deaf-friendly curriculum.”