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Data Driven
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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
From Isolation to Advocacy
Nigeria’s DeafBlind community has long lacked recognition, but the launch of the Deaf-Blind Inclusive and Advocacy Network marks a turning point. Led by activist Solomon Okelola, the group seeks to address communication barriers and a lack of support. Among those affected is John Shodiya, who once thrived in the Deaf community but struggled with belonging after losing his sight.
Disability Aid Disrupted
The Trump administration’s 90-day pause on USAID funding has had far-reaching consequences, particularly for disabled people and organizations worldwide, including members of the Disability Justice Project (DJP) community. Activists from Nigeria, the Democratic Republic of Congo, and Rwanda report severe disruptions, deepening challenges for marginalized communities, especially disabled people facing conflict, poverty, and structural discrimination.
A Life’s Work
After losing his sight, artist Jean de Dieu Uwikunda found new ways to create, using a flashlight at night to outline objects and distinguishing colors by their scents. His story, along with that of DeafBlind sports coach Jean Marie Furaha, is rare in Rwanda. While over 446,000 Rwandans have disabilities, a 2019 study found that only 52 percent of working-age disabled adults were employed, compared to 71 percent of their non-disabled counterparts.
‘I Won’t Give Up My Rights Anymore’
After a life-altering accident, Lakshmi Lohar struggled with fear and stigma in her rural Nepalese community. In 2023, she found a lifeline through KOSHISH National Mental Health Self-Help Organization, which helped her develop social connections and access vocational training in tailoring. Today, Lakshmi is reclaiming her independence and shaping a future beyond the limitations once placed on her. “I won’t give up my rights anymore,” she says, “just like I learned in the meetings.”
Rwanda’s Marburg Crisis
As Rwanda confronts its first-ever Marburg virus outbreak, people with disabilities face heightened risks — not only from the virus but also from the lack of accessible health information. “Without proper accommodations, such as sign language interpreters, captions, Braille, or visual aids, the Deaf and DeafBlind community may miss crucial information about how to protect themselves, symptoms to watch for, or where to seek help in case of infection,” says Joseph Musabyimana, executive director of the Rwanda Organization of Persons with Deaf Blindness.
Capturing Vision Through Sound and Touch
Last year, 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.”