Living with disability in the south

Sitat Mukimova, 35, is from the southwestern Uzbek province of Bukhara, having left her family, including five brothers and four sisters, who had rejected her. She now lives in a nursing home for disabled and elderly people in Yakkabag District of the southern Kashkadarya Province. "I am suffering from poliomyelitis," she told IRIN, stuttering as she spoke. "In 1996, when I finished school, my father died and it was a shock for me. I was so grieving, and for some reason my legs stopped obeying me. Since that time I became an invalid." The nursing home she lives in was built in 1984 with a capacity for 160 persons. Normally, an elderly person unable to live with a family, or someone lacking housing of his own, would be taken care of there. After Uzbekistan gained independence in 1991, the establishment was renamed Good Deed House and now accommodates not only elderly but also young people with disabilities. Sitat came to the nursing home in 1996 and decided to stay there among other disabled people. "It is not easy to provide for an invalid under current financial difficulties. I, for one, cannot sort my life out," she said. A major issue for those at the home and thousands like them across Uzbekistan is the social protection of disabled people. The Uzbek constitution provides that "every person has the right to social support in old age, in the event of the loss of ability to work, in the event of the loss of a provider, and in other cases anticipated by law. Pensions, allowances and other forms of social assistance may not be lower than the officially established sustenance minimum." "They get 10 percent of their pensions, the rest goes to paying for their food, rooms and medicine," Numan Amanov, the head of the nursing home, said. However, a resident who requested anonymity, told IRIN that the 10 percent of their pensions did not even suffice to buy cleaning and hygiene materials. "Everybody has got relatives, and when there is a need to call them, only those who have money can do that. But many don't even get such a scanty pension, as they didn't have a job and work experience." Given the situation, such institutions have to get by on humanitarian aid. Rasullo Abdugafur, an assistant accountant at the nursing home, told IRIN that such assistance was intermittent and mainly in kind. "In the past three months we've received clothes, food and medicine worth about US $45," he said. Most of those at the facility have serious health problems. "Actually, all of them are ill. The older ones are suffering from heart diseases and arteriosclerosis," said Dr Nurbibi Pirboboeva, a physician at the home. According to Pirboboeva, the home's administration spends some $0.16 per day on each patient, which totals almost $5 a month. "We pay every month some $360 for medicines," she said. The patients said that they were receiving medical services regularly, but that the quality was poor. "Such a situation is not new in Uzbekistan. The medical services leave much to be desired, and therefore [the situation] is the same at nursing homes, if not worse," Yadgar Turlibekov, the head of the Human Rights Society of the Kashkadarya provincial department, told IRIN in the provincial capital, Karshi. Meanwhile, Mamatmirza Azimov, the head of the labour and social security department in Kashkadarya province, said all the patients at the nursing homes in the province were provided with medication, food and clothing. "We have more than 52,000 disabled people in the province who need more or less social security," he noted, adding that his department was expecting humanitarian aid from several charity funds and international humanitarian organisations. "We have conducted monitoring of human rights several times and got to know that there haven't been serious violations of the nursing home patients' rights over the last year. But when Kulmamat Khalikov was the director of the house there were cases of abuses under his pressure, including beatings and forced labour," Turlibekov, a local rights activist, maintained. "The patients mostly get sick because they think of their families by whom they were rejected. They do need the love of their beloveds and relatives. Therefore they want to create here what they are not allowed to have [family and children]. As they say, there is life while there is hope," concluded Pirboboeva.