News From the Global Frontlines of Disability Justice
DJP Fellow Retta Maha is the first blind filmmaker the DJP has worked with, and she’s paved the way in showing how individuals who are blind or low vision can tell video stories: “I found that blind people also can be filmmakers, as long as they get support. The blind have their own idea of … what the story is, and then the sighted people can help them make it real.”
Misconceptions surrounding leprosy continue to have significant impacts in Indonesia, a country with the third-highest incidence of leprosy in the world. In Jongaya, people experiencing leprosy live separately from the rest of the population in South Sulawesi. One former resident shares her story.
Six years after Indonesia passed its disability law and 11 years after it ratified the UN Convention on the Rights of Persons with Disabilities, Indonesians with disabilities still do not have equal access to healthcare. Forced to go without medical treatment, many become sicker and perhaps more disabled and fall deeper into debt.
Ariani Soekanwo became a disability rights activist as a college student. Since then, she has helped start several Indonesian disability rights organizations. Age is not an obstacle for her. Her enthusiasm for encouraging the fulfillment of rights for persons with disabilities in Indonesia pushes her to never stop thinking and creating.
After DJP Fellow Naufal Asy-Syaddad was diagnosed with autism, he experienced bullying and exclusion in his early school years. Now, he’s found a home at Yogasmara Foundation, where he advocates for disability rights and raises awareness about autism. People with autism, he says, “are highly misunderstood.”
DJP Fellow Dija spent the beginnings of her life indoors and away from others. “In my village, people with disabilities are pitied,” she says. In recent years, she has been on a mission of acceptance and opportunity for persons with disabilities. No longer afraid to leave her home, Dija draws from her own experiences in her advocacy work.
2021 DJP Fellow Esther Suubi says living with psychosocial disabilities is challenging when the society does not consider them disabilities. She shares her recent depression relapse to shed light on mental health, in solidarity with the global psychosocial disability community. “We are many,” she writes.
Many Indonesians with disabilities are denied social assistance and must depend on others for their survival. They are forced to live with family members – cousins, aunts, parents – in garages and other less than ideal circumstances. Overall, persons with disabilities have the right to live on their own, but Indonesia’s social assistance policies make this all but impossible. To receive government support, registrants must not own property or live in a “rich” neighborhood, among other criteria. A denied registrant with a psychosocial disability shares his story.
DJP mentor Cara Reedy uses journalism, comedy, film directing, and acting to express her experiences as a person with dwarfism. She believes persons with disabilities still face limited access to power, making it difficult for them to control their narratives. As director of the emerging U.S.-based Disabled Journalists Association, she cultivates spaces for journalists with disabilities.
DJP mentor Jason Strother says journalism is a great career for people with disabilities. “I think people with disabilities, journalists with disabilities, bring a much-needed perspective,” he says. A multimedia journalist with low vision, Strother has reported for outlets like The World, NPR, and The Wall Street Journal. He will be traveling to Indonesia this summer as a National Geographic Explorer, covering the intersection of climate change and disability.
Indonesia’s first Muslim female stand-up comic, Sakdiyah Ma’ruf was recently hired to work as an interpreter and instructor with the Disability Justice Project’s first cohort of Indonesian fellows. As a language interpreter, she works to build bridges and connect people. Connection and communication are important to her. She counts herself fortunate that both her work as an interpreter and as a comedian share those commonalities: “I’m first and foremost interested in comedy because of the language. I thought it sounds like poetry even, where it is well-crafted.”
Dr. Bärbel Kofler stated that women and girls with disabilities are between three to ten times more likely to experience gender-based violence than those without disabilities. “Women and girls with disabilities must have a voice,” she said. “Only then will they be able to fully participate in social, economic, and political life.” The next Global Disability Summit will occur in 2025. In her speech, Elizabeth Kanjiwa, a youth leader with visual impairments from Family Planning Association Malawi (FPAM) and International Planned Parenthood Federation (IPPF), recommended that the voices of people with disabilities be included in various high-profile meetings like the Global Disability Summit, where decisions are made, so that there is “nothing about us without us.”
Physicians tend to assess the veracity of their patients – which is, ironically, also a subjective measure – before exploring new, unmeasurable symptoms. But many MS symptoms, like fatigue and nausea, are unquantifiable, impossible to be measured by an external, unbiased machine, and, therefore, are easily dismissed since there is no one test that can say, “This patient is more fatigued than someone of her age and level of fitness should be. So says the test.” Or, “This report says her level of taste is significantly altered.”
The concept behind accessibility is something that advocates refer to as “universal design.” The idea is to make facilities accessible to the disabled and able-bodied alike, and to do it in such a way that it not only doesn’t inconvenience the able-bodied but actually helps them. The classic example is curb cuts, which have turned out to be as much of a godsend for parents pushing strollers as for wheelchair-users.
Every week, the women of the DJP pushed me and my archaic ideas about disability to a whole new realm. Through the strength of these women and the unparalleled knowledge that they carry, I understand more. I understand that a disability can be more than what’s shown on the surface – some boil slightly underneath, warm to the touch.
Uganda has seen a surge in teen pregnancies since schools were shut down due to the pandemic. The lockdowns have deprived girls of the social protection schools offer, making them more vulnerable to sexual exploitation and abuse. “During this COVID period, the teachers have been helping the parents to teach the children about sex education, but the fact that schools have been locked for a long time, it has been hard to educate the children on sex information,” says Gorret Namwanjje with TRIUMPH Uganda.
When Dick Bugembe was first diagnosed with HIV/AIDS in 2009, he thought of it as a death sentence. “I lost hope because I thought I was the only one with HIV and at the same time living with a disability,” he says. “I thought I was about to die and perish very soon.” He went on to found the Masaka Association of Disabled Persons Living with HIV & AIDS (MADIPHA). Today, he is a powerful advocate in Uganda for equal access to HIV services and information.
People who are DeafBlind can feel isolated, says Solomon Okelola, executive director of the Lionheart Ability Leaders International Foundation. In Okelola’s case, though, his solitude also gave him an opportunity to reflect on life and the ways people respond to challenges. “Success and failure are born in the same cradle – in your mind,” he says. “You can conceive whichever you desire.”
Many Rwandans developed post-traumatic stress disorder after the genocide. That led Rose Umutesi to psychosocial disability rights advocacy: “What we should do is to love what we are doing, love what you are doing and focus on it. I know things will be … fully done.”
In 2018, Julie Chibekete 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. She’s hoping to learn more about data storytelling from her DJP mentor. “We’re trying to strategize so that we can support more people,” she says.
Nissy Namuyomba’s identity is formed not just as a person with disability but also as a Muganda woman of the Ngabi clan, speaker of the Bantu language Luganda, young community leader, and family member. One of her greatest memories is presenting her poem about the Masaka Association of Persons with Disabilities (MADIPHA) at the coronation of the king of Buganda on live television.
Since graduating from the School of Law at the University of Rwanda-Huye Campus with academic distinction, Jean Claude Ngabonziza has worked with many organizations, especially those supporting youth with disabilities. “It was not an easy journey but I made it,” he says. Since 2012, he has been a member of the Rwandan Union of the Blind, where he has been advocating for access to white canes for Rwandans with vision impairments.
Disability Justice Project mentor Meredith O’Brien recently published Uncomfortably Numb, a memoir about being diagnosed with multiple sclerosis in 2014. Educating people about chronic illnesses and invisible symptoms is important, she says. O’Brien herself has experienced harassment from those who didn’t understand her disease.
For Oluwabukolami Omolara Badmus, growing up in Nigeria wasn’t easy. “There is no proper infrastructure put in place for people living with disability,” she says. Her passion for disability rights activism has endured over time, with a particular focus on women with disabilities: “My passion, the love, the smiles I see on people’s faces, that is what has been inspiring me.”
Esther Suubi found herself battling depression as an adolescent, and she connected with the organization she works for now – Triumph Uganda Mental Health Support and Recovery Program (TRIUMPH). “I decided to stand up and fight for my fellow girls and young women by speaking up so that we are heard,” she says.