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A Voice for Rwandans with Psychosocial Disabilities
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Meet DJP Fellow Rose Umutesi
October 23, 2021
Rose Umutesi, like many other Rwandans, was forever impacted by the 1994 genocide. “We had a lot of challenges. Girls and women were left, some were amputated. Others were left behind, alone … It came to our mind that we can gather together …” she says. “So, we would sit under trees and discuss our issues, sharing…” According to Umutesi, many Rwandans developed post-traumatic stress disorder and other types of mental health conditions because of the genocide, herself included. The genocide led her to psychosocial disability rights advocacy.
Once you get mental illness, it means you are finished in the community. They don’t consider any more like a person who is useful to families.
Rose Umutesi
Forty-two-year-old Rose Umutesi was born and raised in Kigali, the capital of Rwanda. She received an undergraduate degree in leadership and hospitality management at Akilah Institute in 2019. She co-founded the National Organization of Users and Survivors of Psychiatry Rwanda (NOUSPR) in 2005, hoping to disrupt the stigmatization of and discrimination against people with psychosocial disabilities in Rwandan communities. “Once you get mental illness, it means you are finished in the community. They don’t consider any more like a person who is useful to the families,” says Umutesi.
Today, she helps form district groups for people with psychosocial disabilities in Rwanda. NOUSPR has 19 district branches across the country, with 45 patient experts who assist members of the organization. She contends there is a lot more work to be done, but she maintains a hopeful outlook. “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,” she says. “And, what we need most is to see the community respecting and protecting the life of people with psychosocial disability.”
In 2018, Umutesi introduced a draft of the African Disability Protocol, a human rights treaty that addresses discrimination against people with disabilities in Africa, to the Rwandan Ministry of Justice. A draft was ratified in 2019 and signed this year. Umutesi was elated: “…When they signed it, I was almost jumping and saying ‘Wow! At least I have done something to my country. At least I have done something to my people, to gain their right.’”
Michelle Faulkner is a staff editor at the Disability Justice Project.
News From the Global Frontlines of Disability Justice
Voices Unsilenced
Often dismissed as a personal concern, mental health is a societal issue, according to Srijana KC, who works as a psychosocial counselor for the Nepali organization KOSHISH. KC’s own history includes a seizure disorder, which resulted in mental health challenges. She faced prejudice in both educational settings and the workplace, which pushed her towards becoming a street vendor to afford her medications. Now with KOSHISH, she coordinates peer support gatherings in different parts of Nepal. “It is crucial to instill hope in society, recognizing that individuals with psychosocial disabilities can significantly contribute,” she says.
Capturing Vision Through Sound and Touch
Last 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.”
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.”
‘I Am Left With Nothing’
Recent flooding in Rwanda has left many persons with disabilities without homes and jobs. “Sincerely speaking, I [am] left with nothing,” says Theophile Nzigiyimana, who considers himself lucky to have escaped the flooding. The flooding demonstrates the disproportionate impacts that disasters have on persons with disabilities, which will only intensify as climate change continues.
‘Leadership Training is a Key Focus’
DJP Fellow Sita Sah interviews Neera Adhikari about starting the Blind Women Association Nepal (BWAN) and the steps BWAN has taken to advance the rights of Nepali women who are blind and low-vision. Women with disabilities, particularly those living in rural areas, “face discrimination from family and society which prevents them from venturing outside their homes,” says Adhikari. “In a household where there are two children, one disabled son and one daughter, societal beliefs often favor sending the son to school while neglecting the daughter’s education.”
Accessible Instruction
Nepal has between 250,000 and one million Deaf people, but most do not attend school. In many schools for Deaf individuals, education ends at 10th grade, and higher education is rarely available and often inadequate. DJP Fellow Bishwamitra Bhitrakoti interviews Satya Devi Wagle from the National Federation of the Deaf Nepal about the strategies, challenges and successes of her work on inclusive education. “Because hearing teachers are not competent in sign language, there is no quality instruction in a resource class in Nepal,” she says. “We are working … to create a Deaf-friendly curriculum.”