The Deafblind Association of Nepal (DAN) was established in 2012 and has been working in partnership with the national parents’ association, the Society of Deafblind Parents (SDBP), to establish and strengthen the legal definition of deafblindness based on the views of persons with deafblindness and their families. The Disability Rights Act of 2017 in Nepal includes deafblindness as one of the ten categories of disability. However, the language in the law inadequately describes deafblindness, which leads to barriers in accessing the correct identity card and access to services for persons with deafblindness.
This barrier has arisen because persons with deafblindness and their families were not fully included in the government process to develop the law. Therefore, DAN and SDBP have been advocating to improve the participation of persons with deafblindness in decision-making at the local, provincial, and national levels.
A consortium of DAN, SDBP, the National Federation of the Deaf Nepal (NDFN), and the Nepal Association of the Blind (NAB), was formed in collaboration with Sense International to promote greater participation of persons with deafblindness in decision-making at all levels. DAN and SDBP bring the voice and lived experiences of persons with deafblindness, while NDFN and NAB bring stronger links with the government and greater influence in policy- making based on experience. For example, NDFN is represented on the Disability ID Card Committee, advising the government.
Partnerships with other OPDs are a good way to strengthen the voice and capacities of OPDs of persons with deafblindness and their members. Many persons with deafblindness have links with OPDs of persons with single sensory impairments. The single sensory OPDs may have members who were originally deaf or blind and have acquired deafblindness, which has helped these OPDs to better understand deafblindness. While the services for single sensory impairments are usually insufficient for persons with deafblindness, the single sensory OPDs may share similar goals with persons with deafblindness on some advocacy issues, which can lead to natural alliances.
Members of DAN and SDBP discussed and debated the definition of deafblindness through a series of workshops, and a task force was created to amend the legal definition. This definition was ultimately validated in a national workshop that had a broader representation than the members of DAN and SDBP. This amended definition was presented to the government’s Disability ID Committee by persons with deafblindness. Members of DAN and SDBP also met with the Ministry of Women, Children, and Senior Citizens to advocate for the amended definition of deafblindness. This is currently under review and further advocacy aimed at the Cabinet or Parliament may be needed.
The consortium also advocated to have persons with deafblindness represented on the national High-Level Committee on Disability, an advisory body on policy and programming established by the Disability Rights Act, and on the provincial-level committees. The consortium has been successful in achieving representation at the national level and in two of the seven provinces. They continue to advocate for further representation at the local level.
Because these advocacy efforts were OPD-led, they reflected the priorities and views of persons with deafblindness, which is extremely important for a group that often experiences marginalisation of their voice due to communication barriers. These communication barriers were addressed through the following measures:
Persons with deafblindness have become more visible within the disability community in Nepal as a result of this project. The government also started to recognise persons with deafblindness as a distinct group and allocated some funds to support them with their advocacy at the local, provincial, and national levels, which has helped them to expand their reach to new districts. The government has also invited the participation of persons with deafblindness in policy meetings and provided reasonable accommodations to enable participation, especially communication support.
Meaningful participation of persons with deafblindness in decision-making requires accessibility considerations, reasonable accommodations, and communication supports, including interpreter-guide/Deafblind interpreting services. In addition, capacity building and partnerships with other organisations help OPDs of persons with deafblindness to achieve their goals, overcome barriers, and build their knowledge and experience. Most importantly, it is essential to evaluate how effectively the voices of persons with deafblindness are being heard by assessing whether their voices are being recognised and if their rights are fulfilled.