Blog by Melissa Shang
Storytelling is essential in the world. Stories are an invaluable vessel of knowledge and learning, deepening human connection and have the power to catalyze systemic change. However, most storytelling is not inclusive of persons with disabilities, and many stories are often left untold. Non-disabled persons, largely, control the narrative and are often ignorant of the lived experiences of persons with disabilities at best and exploitative at worst. Many of these stories objectify persons with disabilities, depicting them in a pitiful light or are patronizing and offensive.
Ableist storytelling is a direct contradiction to the popular disability rights movement’s slogan, “Nothing About Us Without Us.” It is critical that persons with disabilities are front and center in any stories that are told about them and are included in policy decisions made about them. Exclusionary practices result in systemic ableism and ostracization of persons with disabilities. “My experience in my Indigenous community in Maros is that persons with disabilities are not willing to be open; they stay at home and close the doors because of the many stigmas and discriminations against persons with disabilities,” said Dija, a member of the Association of Indonesian Women with Disabilities in South Sulawesi and a 2022 Disability Justice Project Fellow.
Recognizing the need for disability-inclusive storytelling, the Disability Justice Project (DJP), a strategic partnership between the Disability Rights Fund (DRF) and human rights filmmaker Jody Santos, was created to mentor and train persons with disabilities to “take back the narrative” as storytellers. The DJP hosts a fellowship program for persons with disabilities in the Global South. These Fellows represent Organizations of Persons with Disabilities (OPDs) that are current DRF grantees. The program includes a 12-week virtual workshop, where the Fellows are paired with and mentored by professional journalists in the U.S. The Fellows learn about digital storytelling from experts, who in turn learn about the disability justice movement directly from disability activists, which makes their reporting more inclusive. Fellows are also sent storytelling kits that include cameras, microphones, lights, and more. The DJP’s 2022 fellowship cohort is Indonesian.
Accessibility is a key priority for DJP. Some of the steps that DJP has taken to ensure accessibility include facilitating this year’s workshop in Bahasa and teaching the Fellows accessibility techniques, such as using image and audio descriptions and captioning videos, providing Communication Access Realtime Translation (CART) and International Sign in its programming, and designing easy-to-read training guides.
“During the DJP workshop, I was introduced to how to use a camera, how to edit, and how to record video angles. I also learned a lot about writing articles. The DJP also helps me constantly and persistently in accessibility with the video making and editing tools.” shared Dija.
Mahretta “Retta” Maha is also a DJP Fellow and program officer at PPUA Disabilitas. Retta learned to use a camera and produced two videos with support, which she didn’t think was possible being visually impaired. Retta shared that DJP also offered support to edit the videos, which she can’t do independently. She’s immensely grateful that DJP hired her to do voiceovers. “I really like doing voice talent, but I once applied to one of the voice talent providers here and asked to be a part of their work, and the owner said, ‘It’s impossible for you to do that because since you’re blind, you cannot imitate the appearance and make it similar with the original sound.’”
DJP Fellows are powerful storytellers with powerful reasons. “I want to prove that I am an empowered woman, that I can be useful, that I can be of value to my community,” says Dija.
The stories that interest Dija are those that are left untold, such as the lived experiences of persons with leprosy, Indigenous communities facing discrimination and segregation, and people being separated from their families because of their disability. After the DJP workshop, Dija wrote an article about how survivors of leprosy are experiencing stigma and discrimination across Indonesia; she is now producing a video on this issue. While working on these multimedia stories, Dija learned about the structure of journalistic articles, how to quote accurately, and issues around copyrights and plagiarism.
Dija, too, prioritizes accessibility in her storytelling by ensuring that her interviewee is “quoted very clearly and accurately,” regardless of their accent, pronunciation, or language. She also uses subtitles and audio descriptions. Finally, she acknowledges that the education level for many persons with disabilities is low due to their disability itself or issues of access and stigma. “We have to share information as clearly as possible to them as well, so that everyone can participate, engage, and respond regardless of their disability and their level of education,” she says.
For Retta, disability-inclusive storytelling is important because “no one will know better about blindness than the blind themselves and no one will know better about Deafness than the Deaf themselves. So as a storyteller with a disability, I can more easily tell people what happens in our lives as persons with disabilities, which will give more knowledge to societies for other communities, so they will know what they should do to help support persons with disabilities so they can live equally.”
Retta’s storytelling focuses on the experiences of the visually impaired community, and she chooses the medium of video. “Nowadays, for most social media, you should add a picture, you should upload a video. And I really want to learn how to do that because I think sighted people need something that they can see, not just something they can read,” she shared. After the DJP workshop, Retta made two videos—one about Ariani Soekanwo, a 76-year-old disability activist who advocates for accessible elections, and another about the struggles of blind masseuses whose livelihoods are at risk from competition from larger spas. Retta says producing these videos taught her that many things can be told through this medium and that “whatever disability you have, you can still make videos. As long as the team knows how to support you, the impossible is possible.” Retta produces accessible media by providing audio descriptions, subtitles, and translations for those who don’t speak Bahasa.
Dija hopes her storytelling can energize other persons with disabilities to tell their own stories. “When you look at me doing all these things, I hope that you understand that you can open yourself up, that you are equal, that you can continue to grow and develop in various aspects. And you have to believe that you have the right to education. And don’t be afraid to ask questions and ask for assistance; you have the right to it.” Dija also wants to remind parents to provide access to education to their children with disabilities “so that they can be independent, self-sufficient.” Retta has a message for other storytellers with disabilities: Center human rights, not the charity model of disability.
Dija says that she wants to live in a world where “persons with disabilities are able to dream, chase their dreams, realize their potential, and achieve their dreams and their goals, and families and governments provide an environment that acknowledges and realizes the potential of persons with disabilities.” Disability-inclusive storytelling is an important step to manifest this dream.