When Maria Neboga’s daughter was diagnosed at birth with three debilitating neurological diseases, doctors urged her to commit the paralyzed baby to a state-run institution.
“In our country, such children are considered unpromising and hopeless. Since my daughter’s birth, doctors have tried to convince me of that,” Neboga said.
The 33-year-old single mother from Osh, in southern Kyrgyzstan, struggles to care for her daughter Dasha, now 6, who suffers from infantile paralysis, epilepsy and microcephaly. Neboga had hoped by now the government would have fulfilled a promise to make life easier for her daughter by ratifying the UN Convention on the Rights of Persons with Disabilities. President Roza Otunbayeva signed the convention in 2011, but parliament has not taken action since then.
Neboga cannot work because her daughter is unable to care for herself, or attend one of Kyrgyzstan’s disabled-unfriendly schools. They receive some support from the state – about $50 a month – which helps pay for taxis to go to Dasha’s doctor appointments (buses lack infrastructure for someone in a wheelchair).
“But I cannot afford to take taxis often, so we can’t go out much. Most of the time we stay at home, or I take her out in a wheelchair,” Neboga told EurasiaNet.org. “In addition, nearly all public buildings do not have ramps, so they are difficult to access.”
Ratification of the Convention would, in theory, ease such burdens.
Activist Shaten Toktogaziyev of the Zhanyryk (“Echo”) Network – a grouping of 28 non-governmental organizations and parents’ associations that promote the rights of disabled people – says the main reason the government has not ratified the Convention is fear.
In January, Deputy Finance Minister Arzybek Kozhoshev estimated in a letter to Toktogaziyev that Kyrgyzstan will not be able to consider ratification until at least 2017. The letter claimed that fulfilling the Convention’s requirements would cost 5 billion soms (over $81 million), adding that Kyrgyzstan could be sanctioned for failing to comply immediately with the Convention’s standards. The Finance Ministry confirmed to EurasiaNet.org that the letter is authentic.
Toktogaziyev challenges the calculations, however. He believes the government has inflated the costs in order to justify a deferral on ratification.
“But even if the economic calculations are correct, we would like to know who and how they [officials] did the calculations,” Toktogaziyev told EurasiaNet.org. “The convention is one of the few UN documents that does not impose any financial or economic obligations or sanctions. Thus, the Finance Ministry’s assertion that there could be penalties for failure to comply with the Convention is wrong.”
The convention’s main requirement is to provide reports every two years on the country’s progress; ratification does not require immediate action, Toktogaziyev asserted.
According to the Ministry of Social Development, in Kyrgyzstan there are over 160,000 persons with disabilities, including 27,000 children. The government pays each a monthly social allowance of between 1,000 and 3,000 soms ($16 to $49). The average monthly salary in the country is 12,000 soms ($195), according to the Finance Ministry.
“Unfortunately, persons with disabilities are provided with low-quality education; sometimes they do not have access to education at all. There are problems with the infrastructure in urban and rural areas; there are often no rehabilitation facilities,” Dastan Bekeshev, a member of parliament who is blind told EurasiaNet.org. “Medical care in the regions is very poor. There are many problems, and the government does not always manage to solve them.”
A December 2014 report by the United Nations Development Program asserts that the formal education rate for persons with disabilities is “worryingly low.”
“Many adults [with disabilities] have never finished primary school, and over half of the parents surveyed said that their disabled child was not currently in school,” the report says.
Parents complain public transport and school buildings are unable to accommodate disabled peoples’ needs.
The government must first implement a three-year social program to help persons with disabilities and prepare for ratification, Burul Suyunalieva, the head of social services development at the Social Development Ministry, told EurasiaNet.org. “Ratification is not an end in itself as the goal is to create necessary conditions for persons with disabilities, particularly in access to education, employment, infrastructure, transport.”
Suyunalieva says the three-year program is based on the convention and was developed in cooperation with non-governmental organizations. “The policy of the government and of our ministry as implementer of this policy is to improve living conditions for persons with disabilities and create equal opportunities,” she added.
But Toktogaziyev, the Zhanyryk coordinator, says the Finance Ministry and the Social Development Ministry are dithering. He calls the delay “contrary to the interests” of the disabled. “Ratification would be an important turning point in the Kyrgyz Republic in building an equal-rights society -- not only for the more than 160,000 people with disabilities, but also for elderly and sick people, the number of which is much larger,” Toktogaziyev said.
Tolkunbek Isakov, president of the Bishkek-based Providing Legal Assistance to Persons with Disabilities Foundation, said “the government is playing catch-up.” He accused authorities of being “passive” in changing their views –from seeing those with disabilities as a medical issue that should be treated and cured, to a social issue that should be accepted and accommodated.
Like Toktogaziyev, Isakov believes the government is stalling. “There is no need to lose two more years [by waiting] to ratify the Convention,” Isakov said.
Hamid Tursunov is a freelance journalist based in Osh.