Back in 2019, a service seeker was filling the form for Disability Identity Card (DIC) for his daughter in a ward office in Madhes, Nepal. While verifying the information, the government officer directed all the questions to the father. When the young girl attempted to claim her space, the officer blatantly silenced her and suggested that it would be in her ‘best interest’ to let her father answer the questions on her behalf. She didn’t speak another word after that. I didn’t know what was exactly wrong in that conversation, but it felt wrong, perhaps because of the girl’s silence, which spoke so loudly to me.
Today, the girl spoke to me again, with more clarity on what was wrong in that conversation and why. Looking back, I realize that persons with disabilities are repeatedly not allowed to speak on basic matters like giving personal information, let alone decide about education or healthcare.
Despite being physically present in that ward office, the young girl was absent legally, for the father, the authority, and everyone else around her. She was not seen as a person with rights and was denied legal personhood. It reflects a broader concern, the denial of legal capacity for persons with disabilities in Nepal. Legal capacity, also interchangeably used for legal personhood, is the ability and the right to make own decisions and have them respected. However, in Nepal, persons with disabilities, especially those with psychosocial or intellectual disabilities, are seen as incapable of making their own decisions. Their families, guardians, and authorities believe they ‘know better’ and make decisions for them for ‘their own good.’
The denial of legal capacity exposes how law and society define voice, autonomy, and dignity in everyday lives, not just in legal terms. Growing up in a diverse country like Nepal, I have observed that socially excluded groups are often silenced and guarded by those in power. The stories of persons with disabilities, especially women, Dalits, LGBTQI+ individuals, and Indigenous persons, are unheard and untold. The society, guided by patriarchy and a condescending mindset, takes the liberty to decide for them, decide where to live, whom to marry, what to study, what kind of healthcare to choose, if any, basically living their life. These decisions are presented as ‘an expression of love,’ ‘support for the vulnerable,’ ‘care for the helpless,’ and ‘family duties,’ but are often made without consent, suffocating them each day.
I believe that, as the caste and gender hierarchies govern the eminence of an individual in Nepali society, so does ableism. Power structures determine who is ‘too poor,’ ‘too educated,’ or ‘too emotional’ as much as they decide who is ‘too disabled’ to make their own choices. Along with personal preconceptions, this reflects the embedded oppression in our legal systems, social norms, and institutions. Among them, the most vulnerable are persons with disabilities, having intersecting identities of caste, gender, and ethnicity, not because they cannot ‘hack’ it, but because they are not allowed to.
Now I understand that asking someone else to answer on someone’s behalf is not a mere conversation. For the authority, it is an isolated incident and it wants to move to the next service seeker; for the father, it is a government office and he wants to get his job done quickly, but no one asks the important question here: how did the girl feel in that moment and how does feel every single time? I believe that the denial of legal agency, capacity, and personhood is more of a structural issue.
Law is like ‘a double-edged sword.’ Law can institutionalize exclusion by justifying guardianship and taking away the autonomy to make choices. Alternatively, it can recognize one’s dignity, defend their rights, and help remedy injustices. The laws that are supposedly meant to promote the greater good have been working to maintain the status quo.
The Convention on the Rights of Persons with Disabilities (CRPD) is one of the most promising international mechanisms, delivering on its preamble to promote and protect the rights and dignity of persons with disabilities. It adopts the principle of respect for inherent dignity and individual autonomy. The CRPD defines legal capacity and personhood as universal human rights. It is a right to supported, not substituted, decision-making. Nepali society has often translated ‘protection’ into ‘control’ and viewed disability as ‘an object of care.’ But the CRPD challenges this understanding of capacity and care.
The Constitution of Nepal 2015 ensures an individual’s right to equality and restricts any form of discrimination on any grounds, including disability, in Articles 18 and 24, respectively. However, while Article 18 includes the term ‘persons with disabilities,’ meaning all are equal, Article 24 is subject to interpretation since it prohibits discrimination based on physical condition, not including mental, intellectual aspects, leaving vagueness. Such vagueness in laws can be manipulated, leading to possible conflicts, exclusion, and exploitation.
Nepal ratified the CRPD on May 7, 2010, demonstrating its dedication to promoting and protecting the rights of persons with disabilities. Nepal enacted the Act Relating to Rights of Persons with Disabilities 2017 to implement the provisions of the CRPD. The act protects the right to equality, dignity, and participation of persons with disabilities; however, it focuses on medical frameworks of disabilities and prioritizes assigning a guardian to make decisions in their ‘best interests.’ But who gets to define their ‘best interests,’ when persons with disabilities are not even provided space or opportunity to speak? The mere symbolic ratification of the CRPD without fulfilling substantive obligations and adopting it in national legislation undermines its purpose.
Laws and practices have assumed that legal capacity is an individual’s legal decision-making skills or mental capacity; nevertheless, the conflation of legal capacity and mental capacity undermines the legal capacity of persons with disabilities who have actual or perceived impairments related to decision-making. Rather, supported decision-making, through decision supporters or peer networks, should be prioritized to facilitate an individual’s autonomy, upholding dignity without denying agency.
What would this look like in the context of Nepal? How would advocacy groups and collectives act as support systems, assisting in decision-making? How could Nepal build legal structures that authenticate consent in non-verbal forms or local community-based mechanisms? This would necessitate resources, intent, and a change in societal attitudes and mindset. Rather than asking, ‘Can they decide?’, Nepal needs to start asking ‘How can we support them to decide?’
Entrenched in patriarchy, casteism, and religious beliefs, Nepali society continues to consider disability as ‘karma’ or ‘curse,’ associating it with shame and burden. They state that this is God’s way of punishing someone for the sins in the past and present life. This belief system looks at persons with disabilities with pity and shapes how families, communities, and often institutions connect to persons with disabilities.
Families, who are central in Nepali society, try to protect their members from this sense of pity out of love, assistance, and existence. However, these ‘protectors’ often turn into ‘gatekeepers,’ deciding on their behalf, stripping away their autonomy. At the same time, children with disabilities can be rarely spotted in the classroom, not because they didn’t exist, but because the system wasn’t built for them. Even if someone was present, they were treated with sympathy and helped, but not with inclusion. This exclusion, dressed as care, is steered by legal systems, allowing for guardianship, and society normalizing speaking for persons with disabilities.
Crenshaw coined the term ‘intersectionality,’ explaining that the level of oppression or privilege an individual enjoys is dependent on the combination of identities one carries. The exclusion becomes multifold when gender is added to identity. Women and girls with disabilities are subjected to violence, inequality, and indignity. Society constantly places them at grave risk of unimaginable exploitation and human rights violations. Parents often see the marriage of their daughters as a burden, made heavier by a disability, resultantly women and young girls (with disabilities) being married off, without their consent. Families and elders are the ones who decide for them.
Last year, while visiting Rautahat district in Nepal, with one of the highest populations of Dalits (historically considered ‘untouchables’), I had the opportunity to meet a young Dalit girl with physical disability. I was astonished when she revealed the reasons for dropping out of school. She, for being a Dalit, was made to sit on the floor while others sat on the bench, and there was no accessible public transportation between her school and village. Media news often reports the physical, mental, sexual, and emotional violence against women, LGBTQI+ individuals, persons with disabilities, and Dalits who dared to raise their voice and claim their agency. This highlights that the deprivation of legal capacity intersects, not only with disability, but also with gender, caste, and other added identities.
These cultural attitudes signify structural oppression that is embedded in academic institutions lacking inclusive pedagogy, in courtrooms relying only on verbal testimony, and in healthcare that doesn’t seek informed consent from patients with disabilities. In this light, legal reforms will remain only on paper until Nepal challenges these layers of exclusion and indignities.
So, Nepali society needs to ask itself: What would transformative change look like in Nepal?
In a legal context, there is a need to replace guardianship laws with human rights approaches. The Rights of Persons with Disabilities Act must be reformed to integrate supported decision-making frameworks, discarding provisions that allow substituted decision-making. These frameworks should be contextualized to reflect the lived realities of Nepal. At the same time, the law development process needs to adopt co-design approaches to incorporate the voices of persons with disabilities, along with their intersecting identities. Law and policy must account for intersectional change to avoid risks of privileging the dominant caste, gender, and ethnic groups.
Although mainstreaming diversity can be challenging for a small country like Nepal, it can be used as an advantage to promote social cohesion, economic growth, innovation, and overall development of the nation. Nevertheless, it is indispensable to reflect whether diversity can be truly accommodated in the existing laws or there is a need to create new legal mechanisms altogether. Simultaneously, legal and health professionals like judges, lawyers, police officers, health workers, and local officials need to be trained on rights-based approaches and how to relate to persons with disabilities as rights-holders, not just receivers of protection. Consent must become the standard, not mere compliance.
In the social context, Nepal needs to empower the organizations led by persons with disabilities, prioritizing the intersection of gender, sexuality, caste, ethnicity, and indigent status in initiatives and plans to advance human rights. Community leaders should lead the movement, build allyship with other socially excluded groups for collective human rights movements, and explore commonalities that support inter- and intra-diverse struggles. Similarly, there is also a need to institutionalize the feminist and intersectional approach to address the systemic injustice and marginalization that women, girls, LGBTQI+ individuals, Dalits, and socially excluded groups with disabilities face in Nepal. History has shown us that when oppressed communities claim their space and agency, they disrupt long-standing exclusion and assumptions. Additionally, civil society must initiate campaigns to ensure inclusive education, legal literacy, and access to justice to mainstream the unheard and untold narratives of persons with disabilities.
Rights will remain cynical unless people change both policy and everyday practices. Change also begins with how, when, where, and to whom we listen. I believe asking ‘Whose voice is missing?’ can reveal underlying structural issues and bridge gaps of accountability and care.
The reflection on how persons with disabilities are denied their legal capacity can help us to realize and change our understanding of rights, power, and belongingness. Today, dignity is not just about recognition in law, but our actions toward one another and caring in a true sense, rather than just saying ‘I care a lot.’
Although Nepal has taken some progressive legal actions, there is still a long way to move beyond charity and control to autonomy and dignity. Autonomy is not a luxury; it is a right. Nepali society needs to challenge the paternalistic, casteist, and ableist mindset in all its forms and rebuild a world where persons with disabilities live their rights. And until every person in Nepal, regardless of ability, can say ‘this is my decision’ and be heard, our work is not done.
(The author is a human rights professional from Madhes, Nepal, currently pursuing a Master of Human Rights Law at the University of Melbourne as an Australia Awards Scholar.)
