Baatarzorigt was born with osteogenesis imperfecta, known as brittle bone disease, a rare diagnosis that affects only 50,000 people in the world. This genetic disorder will affect his capacities all his lifetime, as well as his family. He currently lives with his parents and 3 sisters in a ger district in Ulaanbaatar, Mongolia. A Ger district is a form of residential district in Mongolian settlements which consists of parcels with one or more detached houses or gers (Mongolian yurts). Most ger districts are not connected to water supplies, so people get their drinking water from public wells. For a warm shower or a bath, there are bathhouses. Since there is no sewage system, ger district parcels usually have a pit toilet.
All day long, Baatarzorigt is staying alone in the house of his family, looking after his 2 year old sister. During the day, his parents are working and the other sisters are going to school. The access to toilet is the major problem for him. Indeed, his parents and older sisters have to carry him outside and help him to defecate or pee straight on the ground because there is no adapted toilet facility for him (not even a sink in the house). The situation is even worst during the winter, with temperature reaching -40°C outside. Psychologically, it is very difficult for him to stand this situation since he is ashamed of toileting nearby his sisters. This situation is leading to major psychological and physical problems (chronic constipation).
The local social welfare office is providing him with monthly grants and a wheelchair that he cannot use because of his specific disability. He already had many accidental bone fractures when he tried to use the wheelchair or just even to move around.
Healthy Life Organization is a Mongolian civil society organization that aims to improve the quality of life of populations by accompanying them towards a process of psychological resilience. HLO implemented in partnership with PADEM a pilot project to improve the living conditions of 10 people with physical disabilities in the Bayanzurkh ger district of Ulaanbaatar, Mongolia. Baatarzorigt is one of the beneficiaries of this project conducted in 2018-2019, mainly funded by the Abbé Pierre Foundation. HLO assessed individually the needs of each beneficiary in terms of housing conditions as well as health and psychological issues before implementing renovation works for improving the housing conditions of those vulnerable people.
HLO built a tailor-made bathroom inside the house and provided equipments adapted to him, such as bed, table and chair. It resulted in a tremendous gain of independence for him since now he can by his own go to the toilet, brush his teeth, clean his hands and face, without relying on anyone else. It is of course an improvement for his life but also for the family as a whole.
Nowadays, Baatarzorigt is spending time reading books in his new chair and hygiene is no more an issue for him. His whole family is less troubled by this situation and he is now more recognized as a family member, not a burden. This project proves that the improvement of housing conditions of vulnerable people can have a large impact on people and their families’ daily lives, as soon as we consider all the social and psychological aspects of peoples’ lives for those improvements.
If you want to get more information on this story, please contact PADEM Mongolia: https://www.facebook.com/PademMongolia
