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Mortality of children under five in families in the poorest wealth quintile, compared to the richest.
Activation. Equal Rights. Confident Voices
On 1 December 2017, the "#Activation" forum, organized by UNICEF on the eve of the International Day for Persons with Disabilities, took place in Tashkent. Children and adults with disabilities, parents and professionals gathered to share their life experiences and encourage other parents with children with disabilities to overcome barriers to their full participation in the society.
"Everyone in society plays a role in the implementation of the principles of the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities, including governments, employers, civil society organizations, parent associations and international organizations," said Sasha Graumann , UNICEF Representative in Uzbekistan. "The society cannot be fair until the interests of all children are taken into account, and the interests of children with disabilities cannot be taken into account until data collection and analysis make them visible to the society."
"The unlimited believe of my parents in my exceptional abilities helped me to achieve success, despite the fact I was not among best students in the school for visually impaired children," said Abdulla Abdukhalilov, Senior Lecturer at the Faculty of Social Sciences of the National University of Uzbekistan. "It's important to have faith," said Abdulla, "sometimes irrational faith, without any arguments, simply have faith in your child, as in a miracle. Only this way you'll be able to succeed."
Nodira Tillayeva, Accountant and a member of the Youth Center at the Disabled Persons' Society "Mehribonlik", shared how she lives in a city that is not adapted for persons with disabilities, and how to defend the right to live in an accessible environment. “If every building had an elevator and every bus provided facilities for me to get on, I would have the same opportunities as others,” she noted.
Sevara Mirsidikova, a graduate of a school for visually impaired children, a student of the State Conservatory for musicology / piano course, laureate of international competitions, told about her achievements not with the words but by her music performance, which did not lose any small bit of its eloquence. “I don’t consider myself visually impaired", she said, "I can hear and compose music. Notes are my colors, harmonies are my shades.”
Shakhnoza Ikramova, Mother of a Child with Down syndrome, the Chair of the support group for parents of children with Down syndrome, shared her thoughts: "These children start facing discrimination form the time they are born in the maternity homes. However, home education, love of relatives, access to development programmes, and health care can help them develop better." She also noted the importance of the emotional state of the mother, which should receive special attention from the staff of maternity hospitals.
Vladimir Zubenko, Coordinator of the NGO "USTOM" for persons living with stomas talked about the help his Association provides to people with disabilities, including children. "We have surgeons, but we have no specialist counsellors who can tell you how to live with your new body, how to treat it, where and how to get the prosthetics and how to use it," Vladimir noted explaining why the work of this public association is extremely important.
"Working tirelessly with my daughter helped her to develop successfully," said Aziza Karimova , introducing her daughter Robiya with Down syndrome to the participants. - Robiya attended a regular kindergarten on an experimental basis, and she now studies in the regular school." Aziza believes that the most important thing for parents is to be able to accept their children, because it is the perception of parents that directly affects how children are perceived by society.
Elvira Ligay teaches physical education at the school for children with hearing impairments and is very socially active. "Fight for your children!” - she turned to the parents of the children with hearing impairments. "Teach them everything you would teach other children! It's just their language of communication that is different, in everything else, they are just like other children," – Elvira concluded.
Shodiya Saidkosimova, poetess, young wife and mother, shared her touching poem with the forum participants. You can read the original poem in Uzbek here.
Natalia Plotnikova, Chair of the Kibray District Society for Women with Disabilities "Opa-Singillar", raised a daughter with disability. Her daughter graduated from the Moscow State University and works with her husband in the public organization for supporting persons with disabilities. One could see how proudly Natalia Nikolaevna spoke about the rich full and bright life of her daughter, which in many respects is the result of the right attitude and incredible work of Natalia and her family.
Yana Chicherina, Coordinator of the United Nations Joint Programme for Persons with Disabilities, promotes the rights of children and adults with disabilities. "There are no "us" and "them", that is healthy people and persons with disabilities,” she said. “There are only "we" all together."Humanity – is one whole organism. There is no way an arm can feel good when your leg hurts. There is no way people next to you are being discriminated and it doesn’t concern you. We all are tied together. And to be happy and prosper, humanity needs to count on each and every person. This is what the Convention on the Rights of Persons with Disabilities is all about."
Elmira Basitkhanova, Deputy Minister of Health got inspired by what she heard, expressed gratitude to all participants, and spoke about the initiative of the President of Uzbekistan to support families with persons with disabilities by allocating a housing grant.
The general message of talks: people are not limited by disability, but by the society. Children with disabilities need not pity but the respect for their rights, which will provide them the opportunity to participate in the life of society on the same terms as the other children.