The Fight To Recognise Deafblindness In Nepal

It was the first time I met a deafblind boy in Japan. I was struck by something I had never seen before—a child without both sight and hearing yet fully engaged in learning, surrounded by educators who understood his needs through tactile communication. He was reading with his fingers, communicating through touch sensation, and thriving in an environment designed for his growth. 

Deafblind individuals are those who experience simultaneous difficulties in both hearing and vision, or in some cases, complete loss of both senses by birth or early childhood. In my country, many deafblind children remain hidden away, their potential overlooked due to a lack of awareness, resources, and structured education systems. Witnessing this boy’s right to education, dignity, and independence made me question: Why can’t all children, regardless of their abilities, have the same opportunities? This experience struck me, distinguishing the contrast between the situation of children with disabilities in Japan and Nepal. 

Disability classification

For a long time, deafblind individuals were not distinctly recognised in Nepal’s disability classification. They were often grouped under multiple disabilities, which failed to acknowledge their unique needs and dual sensory impairment. Recognising the lack of appropriate policies and programmes for such individuals, I was determined to promote their inclusion in the definition and classification of disabilities. Coming from Nepal, where the idea of inclusive education for children with disabilities is still struggling to take root, this experience was both mind-blowing and heartbreaking. 

Representing National Federation of the Disabled-Nepal (NFDN) as president, I worked tirelessly to change this perception, ensuring that deafblind individuals received proper recognition, rights, and access to essential services. NFDN plays a crucial role in recognising, promoting, and ensuring the rights and inclusion of persons with disabilities in Nepal. With the goal of providing individuals with disabilities access to education, healthcare, employment, and full social inclusion, the federation has contributed significantly to policy formulation, legal definitions, and government classification processes.

According to the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD), every nation must clearly classify and define disabilities. The federation has been recommending that the government of Nepal adopt definitions that align with international standards. As a taskforce member, with persistent lobbying and awareness campaigns, I persuaded the policy makers that deafblind individuals face unique communication, mobility, and educational challenges, which cannot be fully addressed by merely categorising them under multiple disabilities. This effort led to discussions on creating a distinct identity for deafblind persons in Nepal’s disability classification system, which was initiated just before the peoples’ movement in 2006. 

NFDN vigorously engaged with government authorities to ensure that deafblind individuals were included in national disability programmes and services by their unique recognition within the National Classification of disability, which was endorsed by the government in September, 2007. This was the result of tireless effort of generating awareness among stakeholders, including policymakers, educators, and parents of deafblind children about their specific needs. This advocacy resulted in an increased focus on deafblind issues within Nepal’s disability movement, which was previously overlooked.

Despite policy improvements, it is always essential to have effective programme implementation, and increased public awareness is still needed to enhance their quality of life. It was thus essential to mainstream self-help groups within the disability rights movement. Representing Abilis Foundation, I facilitated strengthening self-help group across the country and further ensured accommodation of persons with deafblindness within the decisive roles of NFDN. Establishment of “Society of Deafblind Parents” in 2005 and Deafblind Association Nepal in 2012 are the pioneering efforts of establishing Organisations of Persons with Disabilities (OPD). Both organisations are supported by Abilis Foundation. 

NFDN was engaged in pushing for the establishment of inclusive education policy, helping create a more enabling environment for deafblind children to receive formal education in Nepal. As a member of “Special Education Council”, I am privileged to support programme of training teachers and educators to effectively communicate with and teach deafblind students how to use alternative communication methods such as tactile communication, haptic signs, sign-language, Braille, and sensory learning techniques. Representing International community through “International Council for the Education of persons with Visual Impairment (ICEVI) and Asian Educational Taskforce of Deafblind International (DbI), I am also privileged to adopt assistive technologies, such as Braille displays, screen readers, and tactile communication devices to enhance education and communication accessibility.

Conference

Deafblind International (DbI) has prioritised Nepal as one of the pioneering countries, recognising deafblind within the unique disability category. The DbI is going to organise Asian conference for the first time in Nepal, engaging consortium partners. Scheduled for March 1-3, 2025, in Pokhara, the conference is poised to yield several significant outcomes. The conference will serve as a platform for professionals, researchers, educators, and advocates to connect, fostering a global network dedicated to supporting individuals with deafblindness. 

Such interactions are expected to lead to interdisciplinary collaborations and opportunity to share and acquire the latest research findings. It is anticipated to develop innovative solutions, educational strategies, and best practices related to deafblindness. The engagement of local Organisations of Persons with Disabilities (OPDs) supports building awareness about the unique challenges faced by the deafblind community. This collective voice can advocate for more inclusive policies and practices at both province and federal levels.  This exchange can enhance educational opportunities and improve the quality of life of individuals with deafblindness, encouraging community involvement in supporting the deafblind population. The conference is set to be a landmark event, contributing to significant advancements in the inclusion and empowerment of individuals with deafblindness across Asia and beyond.

(The writer is the former president and advisor of NFDN)