Bear with me – a bit longer post this time as I
have included Kamala’s story which she is happy to share; it provides a stark
account of living with disability as a marginalized woman in Nepal.
One of the three small Nepali organisations
I am working with is NIDA (Nepal Indigenous People with Disabilities
Association). They are a small group of passionate activists representing the
most disadvantaged disabled people in Nepal, from the least powerful ethnic
minority groups. For the last few weeks it has been a very moving experience to
sit with some of the members of NIDA to listen to and write about their issues
and their stories. My first task has been to help them prepare a submission to
the UN Special Rapporteur for Disabilities on the right of persons with disabilities to
participate in decision-making, which is being collected from all
countries.
Khadgar Magar (man in photo), the President of NIDA told
me:
Ten years ago I suffered a severe spinal injury in a bus accident.
For quite some time I refused to accept my disability….this caused me severe
psychological trauma and for 3-4 years I never left my room. [in Nepal there is still much stigma and
little support for people with disabilities, especially in remote areas]. Because of my background – providing
education to kids – my relative challenged me “if you limit yourself to just
staying in this room how can you develop yourself? Finally I decided to do
something about changing my life. I bought a wheelchair, started writing books
and provided education to my Magar (indigenous tribal group) community.
I went on to join a disability organisation and later I was made
General Secretary but even so I faced great discrimination. It seems that based
on my indigenous status and my severe disability I was excluded from
participation in every decision making process. [most Nepal disability organisations are run by people from the
higher caste, more socially powerful groups]
I only attended the meeting, signed the minutes and returned home. People would
say things like “your disability is too severe…you can’t manage to get to
government offices… there is no access”….“because
you have such a severe disability you cannot handle the responsibility of the
post. I answered them “if you provide for me a disability friendly environment
I can do anything.“ I used to travel two and a half hours by wheelchair to the
meetings. Finally they made me Vice Chairman but that is a non-post…I would
just stand in for the Chairman in his absence and have no part in the decision
making process.
In frustration I left that
organization and set up NIDA in order to advocate for indigenous persons with
disabilities. Our major concerns are related to the different international
agreements on disability that the state [Nepal] has ratified but not yet acted upon. This means that our human rights as
indigenous disabled people to be properly represented through participation in
the relevant policy and decision making processes are not protected. Since we are not on represented on any policymaking
forum, how can we get our voice heard?
NIDA is advocating for people like Kamala.
Kamala’s
story
I was
disabled at birth. My left leg was small like a ball – not naturally formed and
one arm is the same. Once, as a very small child I was injured by a thorn
whilst walking outside. The wound became infected and I didn’t get treatment as
there was no money pay for it – I am from a very poor Tamang (ethnic minority
tribal group) family living in a remote rural area. The wound got worse and worse and eventually it
became cancerous.
I was
admitted to the first hospital when I was 12 years old but my father
disappeared because he could not pay the hospital fees. I also escaped from
the hospital. One of my relatives found me and took me to another hospital.
Again my Father realized he could not pay the fees and he disappeared again.
After that I stayed 2 years in hospital but I had nothing – not even food. I
just ate whatever was left over after everyone had eaten and had to accept
charity – I was like an orphan.
I was
14 when I eventually had to have my leg amputated. After I recovered I was provided with a wheelchair and they said “now you can go home
- we will pay for transport.” I had nowhere to go so I had to stay there for
another two years. My home is in a steep remote rural area- impossible with a
wheelchair to get anywhere and I just couldn’t face my family. Nobody ever came
to visit me in hospital, by now my father was dead and my mother didn’t know
anything about what had happened to me.
Whilst
I was staying at the hospital I met another Nepali woman who had been badly
burnt whilst sleeping. She saw my situation and wanted to help me. Her husband
was in America and they had some money so she paid for me to get a prosthetic
limb. A doctor helped me and took me to the clinic where they make prosthetic
limbs. After getting the prosthetic I was able to go back home to my village to my mother’s house. I t was so upsetting for me in my village. People taunted me and made fun of me. Even my mother was so negative towards me saying things like “what can you do? - nothing.” “What sort of a life can you have?” After a year the ‘foot’ part broke. I went back to the same place in Kathmandu to get it mended. The man asked me “have you brought 10,000 rupees?” Of course I didn’t have any money so I just left and tried to manage. that I could barely walk – I used a stick but it was very hard.
So I
finally made the hard decision to come back to Kathmandu and stayed with a
relative for a while. I got a job cutting wool for carpet – very, very hard
work. Later I got work in an Indian business making necklaces earning 1 rupee
[less than one pence] per necklace. I made 100 a day so that was enough to rent
a small room. When I was 27 I met a nice
man, able bodied, in the Nepal police and on the
third day I married him! I was so happy to get pregnant but then I was
very sick and had a miscarriage at 8 months – this still makes me feel very
sad. My husband had to care for me so he lost his job and he is still jobless.
The
house where we had a room was destroyed in the earthquake and life is very
hard. I cannot read or write because I had no schooling. My husband was an
orphaned teenager as his parents were killed in the Maoist conflict. Me and my
husband are happy together but from morning to night our life is difficult and
we live hand to mouth. My mother used to send grain (rice, maize etc) from the
village but in the earthquake her house, field and belongings were all
destroyed so now there is nothing. The Indians I worked for have all gone back
to India after the earthquake and so again I have no job. For one year now I
have had a big problem with my prosthetic leg which is broken and I keep
falling over – I just have to keep taping it up. I cannot get it repaired
because I cannot pay the fees.
I
don’t know what will come tomorrow……….
Kamala found out that same day that NIDA
have, after months of effort, finally managed to find some financial support to
help pay for her new prosthetic limb.
No comments:
Post a Comment