Intellectual Disability in Nepal: Challenges and way forward
‘’I have so many stories to share but tear off before speaking up. My heart just bleeds by overflowing of sorrows and happiness during the 13 years course of having son with intellectual disability. I really never ever imagine about having disable baby, I had expectation of normal child but he hadn’t had the normal activities even after one year. He was like a piles of muscles, growing up. I lost my eager to eat, drive of laugh and joining any social gatherings and I was crying 24/7 hours. Even I was thinking of my child on dream. When I knew that my son has intellectual disability, I was stigmatized, discriminated in the family, relatives and community. My sons also faced same form discrimination from his siblings, other family members and from neighbourhood. (crying…) even today, he doesn’t get the care or direct conversation from his dad and I often encountered with beating, scolding due to having him or spending time for his care from my husband. I worked so hard to educate him for walking. I made walker from bamboo by myself, I had to take care of work at family and farm so I worked during night. I was so passionate and encouraged when he started to learn. Now, I haven’t had any regret of having child with intellectual disability. The support from my friends and my continuous training to my son, he manages his defection and involved in vocational training. I never give up. Now, I am proudly leading the campaign for educating my community though it is very challenging and often frustrating. ‘’
This is not a single story of a mother of child with intellectual disability from Syanja who economically, politically, culturally dependent on her husband and just literate in village. Many mothers, few fathers and relatives are facing same problem in Nepal. It is because of not having knowledge and skills on rights in general and rights of people with disability. More specifically, they don’t know and don’t like to know about the rights of intellectual disability due to de-facto in socialization process of Nepali community. Neither home, nor school, nor media, nor political parties, nor NGOs are talking about its underlying and secondary causes of intellectual disability, roles of state and non-state actors or not taking accountability largely. It’s a very heart broken scenario where most of them considered as a burden due to heavily imposed by the superstitious believes and practices such as intellectual disability is due to sin of earlier life, fault of parents or angry of god etc. Mostly, in Nepali community, superstitious believes are guided and shaped by the Hindu religion. For instance, sighted few examples from holy Garun Puran which is being use for death ritual as below;
1. A person who killed cow in earlier life, would born with curve vertebra and dumb (chapter 3,5)
2. A person who eat meat in earlier life, would born with red skin (Chapter 5)
3. The person who drank alcohol in earlier life, would born with black teeth (Chapter 9)
4. A person who dominate her/his teacher/guru, would born with epilepsy (Chapter 2,5)
5. A person who ate sweets without sharing with others, would born with goitre (Chapter 5)
6. A person who witnessed with falsification, would born with dump and hearing difficulty. A person who made fake on marriage, would born with hair lip, a person who steal books, would born as sight difficulty (Chapter 5,8).
These are few examples and they may a kind of precaution or informal disciplinary statements during these days. Unfortunately, they practiced as part of culture and institutionalized very well with negative connotation. There is no any scientific base at all thus no ground of stigma, discrimination and all. Sadly, such Garun Puran is been using throughout life with amplifying the stories. No one demystifying such myths, mis-perceptions and practices which is one of the biggest challenge in human right discourse.
Meanwhile, the power, gender roles also constructed from such religions and other institutions where the people with intellectual disability are ‘powerless’ in many ways though there are various forms of disability and intellectual disability. The more severe form of disability, considered more powerless. The status of power further determined of the sex, family educational and economic status and so many other factors. However, people with disability are encountered with various forms of gender based violence (GBV) at family, at day care centre, at vocational training centre, at street and everywhere. They experience the GBV ranges from sexual abuse and exploitation, rape, gang rape, hysterectomy, using contraceptives, negligence in daily care activities, medication etc. Such situation is more prone among the girls with intellectual disability due to gender stereotyped roles and patriarchal mind set and practices. They further encountered with layers of violence once they seek justice. There is still lack of culture of progressive attitude and by laws to increase the access to justice e.g. court seeking evidences of rape violence which is not possible in many circumstances. Many cases came at the door of justice when there are complications or beyond the control of meditation, political influences or any.
Cutting the story short, people with intellectual disability is the most excluded, marginalized community of this country though the new constitutions and international human rights instruments speak loudly about the right of them. It is the concern of human right and have multi-faceted so demanded a very serious attention in holistic manner. Thus, so many things to do on it includes, research and dissemination, engaging key stakeholders such as legal, police, livelihood, media, parents, NGOs, engaging men and boys, for tangible results, empowering people with intellectual disability and their families.
Few photos of facilitated a workshop on context, challenges and way forward on Gender Based Violence in March 27, 2016