‘’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
