Nothing about us without us: disability rights activists in Kyrgyzstan tell their stories
by Zulfia Chynar-Satimbai, Regional Campaigner for Europe and Central Asia. Illustrations by Zhenya Oliinyk
“Why should my life be dependent on others people’s moods or noble intentions?” Ukei Muratalieva asks angrily.
Ukei, from Bishkek in Kyrgyzstan, has cerebral palsy. She wants to live independently, and is frustrated by the discriminatory practices that remain in her society.
Sunday 3 December is International Day of Persons with Disabilities. Globally one billion people, encompassing all ages, genders and ethnicities, have some form of disability. They want, and are entitled to, the same human rights, on an equal basis, as others. But in many countries around the world, this is a long way off.
One thing countries can do to promote, protect and ensure the full and equal enjoyment of all human rights by persons with disabilities is to ratify the Convention on the Rights of Persons with Disabilities (CRPD).
The CRPD, adopted in 2006, is based on the understanding that disability results from the interaction of persons with impairments and the attitudinal and environmental barriers that impede their full and effective participation in society. It provides state parties with clarity and guidance on how they can realize the rights of persons with disabilities in practice.
I spoke to people in Kyrgyzstan, one of few states in the Europe and Central Asia region which has not yet ratified the CRPD, about why ratification is such an important step.
First the local kindergarten refused to take me in and then the primary school.
Ukei, who has worked at the Ministry for Labour and Social Development, described how she was initially denied an education, due to a combination of social stigma and lack of inclusive laws.
“First the local kindergarten refused to take me in and then the primary school. But one teacher disagreed with the headmaster and took me in to her class. Still my mother had to sign a paper to absolve the school of all liability for my health and safety.”
But education became the key to Ukei’s independence. In her teens she attended UNICEF seminars which taught her about her rights, and stressed that children with disabilities should enjoy all human rights on an equal basis with other children.
Ratifying the CRPD would help ensure that children with disabilities enjoy their right to education without discrimination and on the basis of equal opportunity.
Marina Fegele, a local activist in the southern city of Osh, agrees. When she was a child she was run over by a drunk driver and lost a leg, and ‘well-wishers' advised her parents to give her to the state. But Marina remained with her family and friends – and now heads a public group advocating for disability rights.
She has made it her mission to advocate for the rights of persons with disabilities, especially women and girls with disabilities who are at a heightened risk of violence from partners, families and also strangers. She says:
“We need to ratify the CRPD. It won’t change life in Osh overnight but it will set things in motion. To start with adding handrails to the existing ramps, make them safe to use for everyone, whether you are a person in a wheelchair or a parent with a buggy.”
Rinat Janaliev was partially paralyzed in a swimming accident when he was a student.
After his accident, he had issues with equal access to education, employment and cultural life. His family, teachers, and friends tried to fill in for the missing state policies and laws – when he bought his first car, he designed a hand control which his friends then helped to build.
Like Marina, Rinat also spoke about the need for more accessibility. In 2011 he joined a building control commission that is supposed to ensure accessibility in new buildings.
"Useless ramps are being built, funds wasted but no one is brought to account.”
“But I was never invited [to meetings]. They say that they know all the standards. So useless ramps are being built, funds wasted but no one is brought to account.”
This is a common theme; far too often persons with disabilities are not given a say in decisions that they understand best, and which have a dramatic impact on their lives. This brings to mind the phrase, “Nothing about us without us.” Persons with disabilities, including children with disabilities, through their representative organizations, must be consulted.
Again and again, the disability rights activists I met in Kyrgyzstan said that they were tired of being treated as objects of charity and “good intentions” – they want equal enjoyment of all human rights in law and practice.
Why do I need this convention to be finally ratified, after all these years? It is the same question as why do I need to wear clothes, why do I need to eat?
Amnesty International is calling on the Kyrgyz government to expedite the ratification of the Convention on the Rights of Persons with Disabilities as soon as possible.
Furthermore, we call on all the remaining states to promptly ratify the Convention to bring it to universal ratification.
Ukei Muratalieva has no doubt about how important this is:
“Why do I need this convention to be finally ratified, after all these years? It is the same question as why do I need to wear clothes, why do I need to eat? I just want to live independently."