Roya Hassan, passed away suddenly and tragically on Friday June, 2 2023 in Sudan.
Roya was a participant in the 2020 DSROI cohort. Roya was a feminist podcasted and writer. She worked extensively on writing, documenting and producing feminist knowledge. She was part of a feminist school project where she coordinated and facilitated sessions on colonialism, capitalism, and feminism in the South. Roya has volunteered with grassroots feminist organizations in Sudan and had dreams of creating an intersectional Black feminist forum on women with disabilities and feminist experiences in Sudan.
Roya’s life was taken away too early as a direct consequence of the ongoing conflict in Sudan. Because of the conflict between the Sdanese army and the Rapid Response Forces (RSF), there is immense difficulty in accessing medication, medical care and basic supply. After a long, stressful and painful evacuation journey by car to flee the fighting in Khartoum, Roya died following complications exacerbated by the long journey on her already fragile health on top of having to battle a bout of malaria.
Roya proudly identified herself as a disabled person and a feminist.
She wrote about navigating life with multiple sclerosis (MS) in Sudan. Below is the English translation of a post she wrote in Arabic on Facebook about her experience with MS.
“I was diagnosed with a rare and chronic immune disease that currently has no cure in the world..but I will not die, at least I will not die of MS. Multiple sclerosis (MS) occurs when the immune system attacks the central nervous system, the brain, the cerebellum, and the spinal cord. As a result of the erosion of the material covering the nerves, the organs lose their function, whether movement, speech, vision, sensation, memory, focus, balance, etc.When relapses occur, the temporary treatment is to use corticosteroids to treat the relapse, and then immunosuppressive drugs. Doctors cannot say or predict the strength of relapses, their number, their continuity, or their impact. I write this post not for the comments of “May Allah heal you” because when you write it turns into a social tradition... In its origins, supplication is a soliloquy. I am writing for a father who called to ask if his 19-year-old daughter could walk again and for a girl in her early twenties with a child who has completed forty days and who she cannot carry. I am writing to say that we all suffer in one way or another. What differs is our reactions or our dealings with this suffering. What are our choices? How do we manage our battle with ourselves, with others or with the world? How and why do we live? During this journey, I lost 99.9% of the people I knew. It took me a lot longer to understand that not everyone can accept the friendship of a sick / different person..! Not everyone can understand the nature of a rare and chronic disease..! Not everyone has the ability to understand, I admit I was selfish in my thinking. I don't pretend now to accept or understand everything, but I think at least I moved out of the rocking chair. Most MS patients suffer from difficulty in diagnosis, depression, difficulty in finding medications and specialized clinics. It is good that there is a community for MS patients in Sudan. Through the gathering, we can connect patients with neurologists. We try to find medicines, exchange knowledge, experiences and psychological support. It is a tacky phrase, but it's true, you are not alone. It is a disease that affects young women more than young men. Currently, my condition is much better than it was two and a half years ago. I can walk with the help of a cane, but I can walk with 85% vision and sensation." December 13, 2019 #رؤيا_بالألف #invisiblelife
May she rest in peace and power.