Providing Disability Justice Advocates with Media Tools Changes The Game
In Field Notes, writers show us the creativity, perspectives, and strategies of everyday organizers who are pushing us toward a world where a truly just, multiracial democracy is possible. Disability justice is rooted in the knowledge that people with disabilities have agency, power, is a world-wide progressive frontline across borders and political contexts. In this Note, Jody Santos profiles the life and work of 2021 Disability Justice Project Fellow Esther Suubi, who lives and works in Uganda.
08 November, 2023
Editor's Note: This article includes a description of a suicide attempt.
The stigma around mental illness in Uganda is so intense, those who live with it are often shamed into silence. Some are shunned or hidden away by family members. Superstition says they are bewitched and that their condition is contagious. “You go to a ... a family, and they boldly tell you, ‘I have four children - and this one.’ They only consider the four as the children, but the fifth is not ... because of the psychosocial disability,” says Esther Suubi, a peer educator and self-advocate with Triumph Uganda Mental Health Support and Recovery Program. “They give the other four plates, but that person or the child with a psychosocial disability is given a banana leaf to eat their food on.”
Only 1 percent of Uganda’s total health expenditure goes toward mental health, and even though 87 percent of Ugandans live in rural areas, the majority of this 1 percent in funding is invested in a single hospital in the capital of Kampala. Given the lack of access to mental health services and information, it’s no wonder many Ugandans have little understanding of psychosocial disabilities, a term used in the human rights community to reflect the UN-approved social model of disability that determines disability based on discrimination rather than diagnosis.
When 25-year-old Suubi began showing signs of a psychosocial disability as an adolescent, “some friends thought I had spiritual issues,” she says. Family members wanted to take her to church. In school, no one knew how to respond when she became violent or started screaming. Having no words to describe what was happening to her, Suubi looked for a way out. One Saturday she found a sharp stone outside her school and started cutting at her wrists - “so that I can bleed off, end all this suffering.” Then she heard the voices of some of her classmates and stopped before the cuts had gone too deep. “It’s like, ‘Okay, maybe today’s not that day, but there will be another day,’” she says.
When she was 15, Suubi was finally diagnosed with major depressive and bipolar disorders after a family friend connected her with a psychiatrist. “It now began to make sense,” she says. “The sentences were now joining.” Suubi went on medication but struggled with its side effects, especially weight gain. “I was insecure about my body,” she says. By her first year of college, she’d stopped taking the medication altogether; by her second year, she was in crisis again.
At the time, Suubi’s mother worked with a woman named Robinah Alambuya, who’d also struggled with depression in college and had started an organization – Triumph Mental Health Support and Recovery Program – to help others in her community. Alambuya used her platform to share her story and build hope that recovery was possible. After meeting Alambuya and others at Triumph, “I felt relief because I got to know I’m not the only one,” says Suubi, “and I felt there was a safe space for us to share what we’ve experienced.” She began volunteering with the organization as a peer educator, focusing on young women and girls. Eventually, she took her advocacy to a national level, presenting a policy paper to service providers and government officials on why young women and girls with psychosocial disabilities need access to sexual and reproductive health services.
To help crack the taboo around psychosocial disabilities, Suubi is open about her ongoing struggles. A journalism major in college, she has turned to storytelling as a form of activism: “As long as I see an opportunity, I make sure that psychosocial disability is heard and listened to and people should not consider us as being insane, crazy or mad, but human beings just as they are.”
In 2021, Suubi applied to the Disability Justice Project, a media organization that trains people with disabilities in the Global South in documentary filmmaking. Adopting a “view from somewhere” that acknowledges their lived experiences, 20 fellows so far have successfully worked to shift policies at local levels and shift attitudes among the media through their storytelling. At the time Suubi applied to the program, she was in the hospital, recovering from another relapse, and Alambuya and others from Triumph helped her fill out the application. She was selected from a large pool of applicants from Uganda.
As a filmmaker, Suubi wants to show that “people with psychosocial disabilities are capable of being even much more than you think of them.” She has produced video profiles of Ugandan women with psychosocial disabilities who have become successful businesswomen and activists. In another film called One Voice, Suubi interviews a student with epilepsy who was shunned by peers who feared they’d “catch” her disease and also schoolteacher who had to leave her job when the medication she was taking made her too drowsy to function in the classroom. One Voice is also a story of hope as these women join together as part of Triumph Mental Health Support and Recovery Program’s network of inclusion and acceptance in Uganda.
“We are tired of people always pitying us because it makes us feel like we cannot do anything,” says Suubi. “ Telling the stories showed me that one can find positivity in every challenge we face, and it is best to focus on that.” She hopes her documentaries will help shift that narrative: “I believe within the long run, we can eradicate the traditional beliefs or cultural beliefs about persons with disabilities.”
Update: The author requested a change to the language from "suffer" to "live with" in the first line to reflect feedback from the Disability Justice community.
Jody Santos is the founding executive director and editor-in-chief of the Disability Justice Project, which trains persons with disabilities in the Global South in documentary storytelling. A human rights filmmaker, she has traveled to some 30 countries across five continents, documenting everything from the trafficking of girls in Nepal to the widespread and often abusive practice of institutionalizing children with disabilities in the U.S. and around the world. She is an associate teaching professor at Northeastern University's School of Journalism.