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In under 5 mortality rate was recorded in the CEECIS region from 1990 to 2011.
Can my life be made better for me without me?
We interviewed Nodira Tillaeva fr om one of the societies of mutual social help for people with disabilities “Mehribonlik”. This energetic young woman expressed her views on the importance of inclusion and participation.
We don’t want to be pitied, we want to live independently like everyone else
I am a member of the organization which deals mostly with young people with disabilities aged 18-35. And I can surely say that nothing makes us feel more limited as limited opportunities for study and work. Nobody wants to hire a person with disability. It is one of our biggest problems. We keep struggling with the attitude that people with disabilities cannot perform at the required level. It is connected with the difficulty of mobility. Some parents don’t let their children with disabilities become independent. They don’t support us in our efforts to go out and communicate. Some don’t let us study at a higher level or just hide us from the community. There is a lack of trainers or social workers who can work with young people with disabilities and help them understand their values and be more self-confident. Being included, being supported by the community is very important. As the first step, it would make us feel confident that our voices matter, and secondly, it would motivate us to give our best efforts.
Nothing for us, without us
There are many articles and social media posts that make weak attempts to raise the issues of people with disabilities. I was even suggested to contribute to some of these articles. But honestly, I don’t believe my interest can be represented by a person who hasn’t felt what I felt; who can’t understand the way I live and what I have to overcome. It is no blaming. I just know it is impossible to know without having lived through something different. I am quite positive that the best solution is having people with disabilities in the government at the decision-making level, wh ere they would be able to represent the interests of people with disabilities.
Charity is no solution
There are non-profit organizations that are supposed to help people with disabilities. However, one of the big problems of these organizations is that they don’t look for solutions of real issues. They just look for sponsors for charity events like concerts, buffets and presents. I understand they want to cheer us up, and they do so. But, it doesn’t bring us any closer to fulfilling our lives. We should not forget that medicine, daily food, communal services all imply the necessity of regular income. We would prefer easier access to education – online courses maybe, or assistance with employment, or some kind of psychological support that would help us believe in ourselves and live without having to be dependent on someone to perform our daily routine. The issue is a lot deeper. Maybe this could have been resolved with a law on assistance with professional training and employment, and its provisions. That would help people with disabilities stop depending on material and physical help from others and let them provide and take care of themselves – which is very important to us.
Our physical condition doesn’t make us feel as disabled as the lack of faith in our abilities
There is a common myth that people with disabilities cannot be intelligent and should not be trusted the responsibility. But the truth is often their potential has just not been tapped because no opportunity has been provided to them. If we could get an opportunity in any sphere - including government – I am sure there would be a considerable change. We hope that this happens soon, so that we will all know our real potential.