On Friday, after a long day of meetings with various officials and staff involved in the project, I finally got to meet two of the families for whom this project is being run.
Both families we visited lived in round traditional Mongolian Gers. Out in the countryside, in picture book Mongolia, these Gers would be just set-up in the open with the animals grazing nearby. But here in the town, where 80% of the population still live in Gers, each family Ger was surrounded by a 6ft high wooden fence. Many would still have a few animals in the small compound, an old rusting truck in one corner and a latrine in the other – and of course the large aggressive looking guard dog that had to be tied up when visitors entered.
The first family consisted of a mother and a father who worked as a security guard, their son who had an undiagnosed cognitive disability and a niece who must have been 6 years old.
The boy was 15 years old but had a mental age of four and three years ago had dropped out of school. Fortunately he was able to continue some informal schooling from 11am till 3pm each day, and in this way was able to make slight progress with reading. He remained silent for the whole time we were visiting and apparently only his mother can understand what he is saying when he does speak.
Four years ago it was discovered that he had cysts on his brain, so his parents sold all of their livestock so they could afford to take him to Russia for an operation. Unfortunately the operation was not a success but now they cannot afford to have further surgery. He also suffers from epilepsy, for which the government does provide free tablets. But they are not the particular type of tablet he needs and actually makes it worse for him. The tablets that he needs – costing £160 per year – have to be taken three times a day, but because of the cost his parents can only afford for him to take 1-2 tablets a day.
The mother has to stay at home to care for him, and can only go out when she can find someone to look after him. She explained that she would like to be able to ask her son to go on errands to the market but she is worried what the community will say or do to him.
When I asked her if and how the ADRA project was helping her situation, she said there were two main ways other than providing information on disabilities and what services they are eligible for. Firstly, she has discovered, through the project, that there are women and families in her neighbourhood who are in very similar situations. The project has brought these parents together and allows them to share what they are going through and mutually support each other. If it weren’t for the project then she would have remained stuck in the thinking that she was going through this alone. The other way that the project has provided support has been through a vocational training course that she was able to attend. She has been able to learn a new skill and now makes work-gloves that she is able to sell to road sweeper to supplement their income.
Though she didn’t say so, it was clear that this also gave her a purpose and hope in life, something that is so important when faced with the challenges her family face. And of what hope for her son? Despite his learning difficulties with reading and writing, his drawing and wood work skills were excellent and his mother is already talking about him working in a carpenters shop to create decorative furniture.
When we reached the second family’s compound we were met by a girl of about seven year struggling to control an extremely large and aggressive dog. As I didn’t speak any Mongolian there was no point in being involved with the conversation so I waited at a distance!
She explained her mother had just gone to fetch water and pointed to a speck in the distance trudging across the frozen river. We decided to wait and the driver took the opportunity to get out a hammer and proceed to knock large chunks of ice off the underside of the car. After about a twenty-minute wait, the mother finally returned with a yoke across her shoulders carrying a pair of buckets full of water. We followed her in, keeping an eye out for the large dog who had thankfully by then been tied up.
This second family seemed to face the same challenges as the first although the woman was left to face them alone as her husband was living in Ulaanbaatar. I couldn’t work out whether this was because he had left her or because he had found work there and was sending money back, but either way she was left to look after four children, the youngest of which was a 2 year old boy with a severe disability.
As the woman told us her story, and I listened in as it was translated, she suddenly started crying and sobbing loudly with despair and worry for her son. A year ago the family had been able to save enough money, or rather sell off all their livestock in order to take their son to Ulaanbaatar to have an operation. Whilst the operation in itself was free, the cost of getting there and back was £250 for each of them with additional costs of somewhere to stay when they got there. Unfortunately the operation was not a success and the woman was explaining how they could not afford another operation.
I queried this with my translator as I had thought the operations were free of charge. But it turned out that whilst this was the case, if you wanted a better job being done you had to pay the surgeon. The family had been unable to afford this and so they believed the reason why it failed was because they could not afford the surgeon’s ‘fee’. Apparently this was common practice, so for families like this who were unable to pay, they ran the lottery of second-rate treatment.
We’ll never know whether, if the family had paid for the operation, it would have been a success or not. But the mother obviously believed that it had not been a success because she was unable to afford to pay – and that in itself is not easy to live with.
