News
Voices Unsilenced
Reclaiming the Inclusion of Persons with Psychosocial Disabilities in Nepal
February 14, 2024
LALITPUR, Nepal – People with disabilities form 2.2% of Nepal’s population. Nepal’s 2021 Census estimates the population of individuals with psychosocial disabilities to be approximately 27,500, or 4.2% of the total disabled population. Experts say that this data is underreported due to various factors, primarily stemming from a lack of awareness about psychosocial disabilities among individuals, their family members, and communities.
Among the organizations supporting persons with psychosocial disabilities in Nepal, KOSHISH is a pioneering non-profit working at the grassroots. Srijana KC, 31, is a psychosocial counselor at KOSHISH. In her role, she amplifies the voices of people with psychosocial disabilities and connects them with the local government, employment providers, insurance agents, and legal aid providers to access their rights.
In this edited interview with her colleague and DJP Fellow, Sanjaya Neupane, Srijana shares how her psychosocial disability shaped her activism and commitment to disability rights.
Question: Can you share the challenges you’ve faced with mental health and any factors that have played a crucial role in your struggles?
Answer: I have experienced mental health challenges since my early childhood due to my seizure disorder. This included difficulties in walking, experiencing frequent seizures, generally twice a day, leading to bruises and sores all over my body. Beyond these physical struggles, the stigma associated with seizures led to instances of inappropriate treatment from both teachers and friends. Derogatory comments and attempts, driven by negative stereotypes, such as the belief that sniffing foul-smelling socks could prevent seizures or forcibly placing a spoon in the mouth to prevent tongue biting, were unfortunately common practices during that time.
My seizures intensified significantly after the death of my father when I was 13 or 14 years old. Initially, traditional health practices were sought [by my family], as was common in many villages and some urban areas during that period.
Eventually, my family sought psychiatric help, and I was prescribed medications, including drugs that made me drowsy.
Question: Can you describe how your access to medication and employment opportunities was affected by your condition?
Answer: My siblings provided treatment and medical support for one month when I was 16 and then discontinued the support. I needed to earn to continue the medication. [I was] struggling with a lack of skills and support. [But] employment [was] the only alternative for supporting continuous medication while continuing my education. After passing [10th grade], I started working as a laborer in the afternoon, attending college in the morning. Finding employment was not difficult during that period but [it was] hard to continue with.
My employers fired me due to their [stereotypical thinking] that [because of my] mental health challenges, I would damage materials, pass out from a seizure, or accidentally spill blood and foam from my mouth, potentially spreading it to others.
That pushed me to become a street vendor. I would sell fruits, vegetables, and sometimes chatpate and pani puri (sweet and sour Indian street food).
Question: Is such discrimination common in Nepali society?
Answer: I have been consistently supporting and facilitating peer support groups across various regions of Nepal since 2017, collaborating with different projects at KOSHISH. [I have found that] many individuals encounter difficulties marked by stereotypes and isolation within their families. Their voices are often excluded, neglected, or given insufficient attention. Unfortunately, those with mental health challenges are sometimes unfairly labeled as lazy, unresponsive, erratic, or even lunatics. These judgments may stem from attitudinal biases and ignorance, stigma, or misconceptions.
Question: Who do you believe holds significant influence or power in driving societal change for mental health? How can various stakeholders contribute?
Answer: Often dismissed as individual problems, mental health issues are societal issues. Advocacy in this realm should not be limited to specific groups. It involves every individual, be it professionals, community-based organizations, government and non-governmental bodies, activists, human rights organizations, civil society, journalists, farmers, laborers, industrialists, and business communities.
Mental health conditions are not confined to any particular strata, affecting individuals across the spectrum of wealth, success, love, devotion, or hate.
Question: Could you share a pathway for the inclusion of persons with psychosocial disabilities in your community?
Answer: Mental health and psychosocial disabilities are often misunderstood and present multifaceted challenges, hindering full inclusion in the community. This is fundamentally a human rights issue, demanding the establishment of quality services and responsive procedures, both medical and non-medical.
Our focus should extend beyond curative measures; we must invest in community education, reaching both remote and urban areas. It is crucial to instill hope in society, recognizing that individuals with psychosocial disabilities can significantly contribute.
Concrete steps like implementing inclusive policies, providing mental health education in prevention, promotion, and protection, and fostering workplace accommodations can play a pivotal role. Community insights will contribute significantly to the ongoing efforts to dismantle stigma and promote a more inclusive environment for those with psychosocial disabilities.
Sanjaya Raj Neupane is a passionate disability rights advocate dedicated to mentoring individuals with psychosocial disabilities. In his role as the advocacy coordinator at KOSHISH, he plays a crucial part in advancing rights, promoting inclusive livelihoods, and seamlessly integrating mental health into Nepal’s healthcare system.
News From the Global Frontlines of Disability Justice
Rwanda’s Marburg Crisis
As Rwanda confronts its first-ever Marburg virus outbreak, people with disabilities face heightened risks — not only from the virus but also from the lack of accessible health information. “Without proper accommodations, such as sign language interpreters, captions, Braille, or visual aids, the Deaf and DeafBlind community may miss crucial information about how to protect themselves, symptoms to watch for, or where to seek help in case of infection,” says Joseph Musabyimana, executive director of the Rwanda Organization of Persons with Deaf Blindness.
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.”
Work for All
The We Can Work program equips young Rwandans with disabilities to navigate barriers to employment through education, vocational training, and soft skills development. By fostering inclusive workplaces and advocating for policy changes, the program aims to reduce poverty and promote economic independence. Participants like Alliance Ukwishaka are optimistic that the program will enable them to achieve their dreams and showcase their potential. The initiative is part of a larger effort to support 30 million disabled youth across seven African countries.
Global Recognition
Faaolo Utumapu-Utailesolo’s film “Dramatic Waves of Change” has been named a finalist in the Focus on Ability International Short Film Festival. The film, completed during a Disability Justice Project workshop in Samoa, highlights the impact of climate change on people with disabilities in Kiribati. Utumapu-Utailesolo, who is blind, used an iPhone with accessibility features to create the film. “Do not leave people with disabilities behind when [you] plan, implement, and monitor programs regarding climate change and disaster,” she says. Her achievement is a testament to the power of inclusive filmmaking.
Advancing Democracy
Rwanda has made significant progress in making its elections more accessible, highlighted by the July 15 general elections where notable accommodations were provided. This was a major step forward in disabled Rwandans’ quest for equal rights and participation. “You cannot imagine how happy I am, for I have voted by myself and privately as others do accessibly,” says Jean Marie Vianney Mukeshimana, who used a Braille voting slate for the first time. “Voting is a deeply emotional and meaningful experience for a person with any disability in Rwanda, reflecting a blend of pride, empowerment, and hope.”
Barriers to the Ballot
Despite legislation like the Americans with Disabilities Act, barriers at the polls still hinder — and often prevent — people with disabilities from voting. New restrictive laws in some states, such as criminalizing assistance with voting, exacerbate these issues. Advocacy groups continue to fight for improved accessibility and increased voter turnout among disabled individuals, emphasizing the need for multiple voting options to accommodate diverse needs. ““Of course, we want to vote,” says Claire Stanley with the American Council of the Blind, “but if you can’t, you can’t.”