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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
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.”
Capturing Vision Through Sound and Touch
Over the 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.”
‘We Live in Our Own World’
For Rwandans with DeafBlindness, critical services like healthcare and educational systems rarely offer necessary accommodations like assistive devices and tactile sign language interpretation. Naomi Uwizeyimana shares her experience with inaccessible infrastructure: “You need a person to help you to communicate everywhere you go and to get every service you want, which cannot always be possible.” Her mission is to bridge the gaps and support the DeafBlind community to fully participate in society.
Art vs. Stigma
DJP Fellows Esther Suubi and Kinanty Andini both advocate for the rights of persons with psychosocial disabilities through their art and filmmaking, working to create a world free from stigma and discrimination. “I hope that people will realize that mental health is really important, and I hope that many people will not be ashamed if they find out their friends or their family or maybe themselves have mental illness,” says Andini. “We must speak up and prove that the stigmas are wrong.”
Inclusive Care
For decades, Rwandans with disabilities faced significant challenges to accessing health care. Now the country has embarked on an ambitious plan to renovate all of its outdated facilities, with accessibility as a priority. Thirty health centers have been updated so far, changing stairs into ramps, adding Braille signage and more. “Having access to health services to persons with disability in Rwanda is like dreams that we all wish to be true,” says Aimable Irihose of the Rwanda Organization of Persons with Physical Disabilities and Wheelchair Users.
From Stage to Society
Terubeimoa (Ruby) Nabetari has been using the skills she learned as a composer of music and drama to help her organization, Te Toa Matoa, get their messages across about the rights of persons with disabilities in Kiribati. When she first became disabled from an accident, “I felt sad and confused … because I was well-known as a person who composed music and drama in my country,” she says. “But as time went on, I thanked God that I changed my mind and started to realize what I have to offer people with disabilities.”