In principle, every citizen with disabilities should receive some form of support. There are others within the broader disability community advocating for due recognition in the Act
Over the last few weeks, once again the country came to remember that persons living with disabilities do exist and, at least on paper, do have rights. As always, the International Day of Persons with Disabilities that is held on December 3 each year, offers an important opportunity to reflect on the current status of play in terms of implementing disability rights as per the laws of the country.
Inclusion is about tools and ways, many of which are very practical in nature, jobs and equal representation in the decision-making process, which can make Nepal's society more cohesive and solidarity driven. In relation to disability rights, it would imply that citizens of the country do have a solid understanding of the existing challenges that persons with disabilities face on daily basis.
Fundamental to this process is also to gain knowledge about the legal provisions dealing with disabilities. Since 2017, Nepal has a new legislation - The Act Relating to Rights of Persons with Disabilities (2074). Finally, the national's legislation had become aligned with the principles enshrined in the Convention on the Rights of Persons with Disabilities, to which Nepal is a state party. This milestone would have been even more groundbreaking and transformative had we witnessed an effective and holistic implementation of the legislation.
To better understand the existing challenges with the current level of implementing the Act, I had a conversation with Krishna Gahatraj, a disability-inclusive development expert, himself living with disability. From my talk with Gahatraj, who is Nepal's focal point for the Disability Rights Fund, an international organisation supporting Organisations of Persons with Disabilities around the world but who talked to me in his personal capacity, I found out that the Act itself requires some important amendments.
"Right now, there is an ongoing, I would say, complex debate within the disability community in Nepal about the changes needed to make our legislation more effective and equitable," he shared with me online.
He told me that there is an ongoing effort to improve the legislation, considering the fact that normally each legislation undertakes a review exercise every four or five years. As of now, Gahatraj said, the current law does not fully espouse the "human rights based approach". In contrast to the medical approach, according to which persons with disabilities "need to be cured", under the rights-based model, "persons with disabilities are recognised as having the right to equal opportunities and participation in society".
Over our talk, Gahatraj guided me on understanding the difference in practice. "The current legislation existing in Nepal," he said, "is based on an impairment model that fundamentally gives priority to a classification of disabilities according to certain typologies."
"Currently 10 typologies of disabilities are recognised in the Act; there is also in place a system that is based on four categories centered on the degree of severity of the impairment." In the current system, only those with the most severe forms of disabilities have rights to some financial support.
In short, all persons with disabilities, regardless of their type of impairment, are divided in categories. Those belonging to A and B categories, each representing, respectively, a total and severe level of disability, have rights to an allowance while those under C and D categories, the former for moderate and the latter for mild disabilities, do not get anything.
"What if a citizen living with disability who falls under category A or B has the means to support herself or her own family can support her without any problem because of their solid income? This citizen does not really need any help," he said.
"In principle, every citizen with disabilities should receive some form of support. Yet in practice, the provision is problematic because there are so many persons with disabilities in categories C and D who are in dire need but are not getting anything."
This is not the only problematic aspect with the current legislation. "There are different stakeholders within the broader disability community who are advocating for due recognition in the Act."
For example, persons with albinism are not been included in the Act. Thalassemia (an inherited blood disorder) Gahatraj shared, is not currently included.
"Moreover, persons living with dwarfism also want to have a separate provision in a revised Act because they feel that they are in need of unique and tailored-made solutions for them. Additionally, also persons living with spinal cord injury are reclaiming to be entitled to have a separate category in the Ac."
Then, there is the issue of intersectionality.
"This aspect," Gahatraj elaborated, "is very important because, like everybody else, also persons living with disabilities have a whole spectrum of identities. It is not that they consider themselves as only disable."
"What about a citizen living with a psychosocial or developmental disability who also belongs to a historically marginalised and discriminated group? What about a citizen with disability who is also a Dalit?"
This is a complex aspect that must be dealt with if we really want to break the cycle of poverty and discrimination affecting so many citizens with disabilities from marginalised groups.
"Lastly," Gahatraj shared, "we are talking about the revised Act to entail a provision to establish a Disability Commission, but we are also fully conscious that the existing like-minded commissions, established to support vulnerable groups, are not effective at all.
"The national disability community is united in demanding a new body, a sort of High Level Authority that has real power and real teeth to help with the implementation of the revised Act," he said. "Without such powers, we will, once again, fall in the very probable possibility of having a better and stronger Act on paper but no real implementation."