Living with disability in Nepal - Kamala's story

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.

                               Members of NIDA I met with this week : photo by consent

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

                                                  

                                                   Photo by consent

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.  It 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.

Our neighbourhood

Photo credit: Himalayan Times

I love our neighbourhood, ‘Dhobighat’, which means ‘the clothes washing place’. Across the road, down a steep hill you can still to this day see piles and piles of clothes – school uniforms etc being washed and put out on the hillside to dry. When we lived here with the children we used to send our laundry to ‘the Dhobi’ – a man on a bicycle came and picked it up and delivered it washed and ironed a few days later. Nowadays lots more people, like our landlord, have washing machines so we can do our own.

We live in a downstairs flat next door to a Pakistani aid worker and his wife, a Spanish aid worker rents the middle flat and our landlord and family live on the top level. Mohan and his wife Sharmila take good care of us all and their house. We like to sit outside in the paved garden(Fin has spent hours power washing this!) in the evening in the cool breeze enjoying the bamboo and other trees, at least until the mosquitos get too much!

Our front yard, bamboo trees – our door behind the little shrine

There is a little family Hindu shrine outside our front door. Each morning and evening Sharmila comes to offer her devotions and to ask blessing on the house and for all of us. She lights incense and rings the bells – not unlike the rituals in the Catholic church nearby which we sometimes attend alternatively with the international protestant church and a small Nepali church.  Some will say these rituals are based on fear and superstition but I find myself moved by these family acts of devotion as well as the more public ones around the neighbourhood every day outside shops and houses. Daily devotion is the habit too of Buddhists and Christians in monasteries, churches, offices, other work places in Nepal.

Hindu offering outside a home

Hindu offering outside a shop

These daily devotions are important to people who, whatever their different beliefs, all humbly acknowledge the reality of how vulnerable and mortal they are as human beings in the great scheme of things – people who have lived through earthquake, poverty, civil war, disease. So the parents and grandparents carry on these traditional rituals and many of their kids, technology devotees, come and go from school wired up to other more globally modern systems!

Behind our house is a girl’s high school, right next door is a huge mixed high school and outside our bedroom window is a little kindergarten. I find the constant high decibel sound of children’s and young people’s voices strangely pleasing and companionable, perhaps as we are 'new' and you cannot feel lonely surrounded by them – I’m sure it will soon wear off! The ‘sounds’ did turn to ‘screams’ a couple of weeks ago when we had another earth tremor which was disturbing but at 4.6 not dangerous. Still, hundreds of panicking students with raw memories of the ‘big one’ took a good half and hour to calm down and go back inside.

At the end of our little dirt road there is a main road – it’s like a big, long village – little veg shops, butchers,(goat’s head forlornly decorating the slab)  barbers, hairdresser (signed  ‘trained at Tony and Guy, London’ – might try it! ) , pet shop (new thing!), ‘Big-Mart’ (not big) supermarket, temple, shrines, stationers, tailors, mobile phone shop, five a side football court, coffee shops and cafes. At 8.30 am, after school and 5pm the traffic is manic. Crossing the road is terrifying until you get used to just walking right amongst the cars, buses and motorbikes believing that they will work round you which they do!

Photo credit: blog.nepaladvisor.com

Moving forwards in Dhading (with photos this time!)

After an arduous couple of weeks recruiting, our first 3 senior programme staff and others have started work with us. A long and fruitful day in Dhading on Thursday when we signed the project agreement with our three partner organisations. The distribution of agricultural supplies will now begin – vegetable and cereal seeds, fruit saplings and livestock. Building work must wait until after the monsoon rains at beginning of October. The partners will draw up the selection criteria according to the degree of need and this will posted in the community for transparency and to try and minimize potential conflict.

Jaap Noordzij , UMN Disaster Response Manager presenting the signed agreement with HIMS Nepal- our partners in North Dhading

We met up with our new office assistant, Abina Lama from Lapa, one of our most remote working areas in North Dhading. She told us that her whole village had relocated 2 hrs walk higher up the mountain as it was completely destroyed and landslides had obliterated their fields. Their  access footpath (nearest road 2 days walk away) and bridge has also been badly damaged. I asked her “what would be a priorty for your community – house building or path and bridge repair? “ She answered that we should repair the road first. Even though the whole community is living in temporary shelters, she said they need the path made so that they can get all the materials and supplies they need to their new village. 

A village in Lapa VDC after the earthquake (photo credit: Himalayan Times)

Abina is a remarkable young woman from a poor Tamang area where there are no schools providing education above class 5 (8-9yrs old) in the whole of the Northern area. From class 5 onwards she lived and studied with other students at the district headquarters 2 days walk away. She is now completing her first year B Ed part time. She has classes from 6.30 – 8am six mornings a week before going to work.

For distributing agricultural supplies we will be using a voucher/cash transfer system using mobile phones linked to banks – (more people have mobiles phones in Nepal than have access to clean drinking water). This gives the control and responsibility for accessing and choosing supplies/livestock to the beneficiaries themselves. This system has already successfully been used in Nepal relief programmes.

Road rebuilding and bridge repair will be carried out using a ‘cash for work’ mobile/bank linked scheme, providing some short term employment so people will have money for house rebuilding. We will be providing  skilled masons and financial support for materials to make the houses earthquake resistant such as cement, steel bars, timber etc. to strengthen the mud and stone traditional houses. 

UMN and Partner Staff lunch break during agreement proceedings.

These days in development work there is the recognition that local conflicts can be an issue especially where big programmes like relief work are taking place. We are fortunate in UMN to have a ‘Peace Building Team’. They will be providing conflict resolution training to all new staff. They have already met Jaap and myself to do an initial assessment of possible areas of tension. For example, selection criteria, treating different tribal and religious groups equitably and transparency with government officials. In the North there are a majority of Christian communities and just a few Buddhist communities compared to the Southern part of our working area which is mainly Hindu.  Our meeting with the local MP in the North, who is a strong Buddhist leader, will be very important in agreeing the work programme and building trust.

As you can imagine there are as many frustrations and obstacles as there are steps forward. For example there are strict government training criteria for Masons and strict building codes for houses. The danger is that people will get frustrated and build their house regardless with no earthquake resilience. Another frustration is that we want to carry out more relief work in the tented camps but at present cannot get the necessary formal permission. One issue is that the Government fear that people will not move out of the camps if too much support is provided.

Next week we are meeting with local leaders and partners and visiting a completed Temorary Learning Centre in South Dhading, one of 11 that are being supplied in that area. We have plans to build around 45 in total.

Jaap handing agreement to Prayas, our partner in South Dhading