Putting a spotlight on disability: UN in Uzbekistan stages “We: inclusion” exhibition and Activation 2.0 event to mark International Day of Persons with Disabilities.
In the dimly lit foyer of Tashkent’s Ilkhom theatre, sparkling decorations attracted crowds to a new exhibition to mark International Day of Persons with Disabilities. Its title was “We: Inclusion.”
From the walls smiled pixelated portraits of young people with disabilities, each composed of hundreds of tiny images of them and their friends engaged in drama activities. On spot-lit podiums, some unexpected objects caught the eye: a pair of swimming goggles, some coloured pencils, a globe, some unworn silver shoes. Each of these mundane items spoke of the ordinary, yet active life of its owner, someone living with a disability.
The crowd of a hundred people with and without disabilities, moved on to a futuristic room made entirely of LEDs, where six life-size figures spoke monologues from the screens. The experience was a one-on-one with individuals with disabilities; a rare chance to hear directly from a group who are often hidden from view.
“Wow,” exclaimed a group of students. “This exhibition really shows that people with disabilities are just ordinary people. Society has ignored their challenges and problems for too long.”
The opening speeches underscored the results achieved, and the work yet to be done to normalize disability within society.
“Far too often, too many of the one billion people living with disabilities remain hidden from view, their needs and concerns unheeded, their contributions unsolicited, their productivity untapped,” said Helena Fraser, the UN Resident Coordinator.
Afshin Parsi, Deputy Representative, UNICEF Uzbekistan shared some stark figures: according to official data in Uzbekistan, about 90 percent of all children in institutions are children with disabilities. They are about 74 times more likely to be placed in orphanages and be separated from their families than children without disabilities.
“Disabilities used to be a closed subject,” said Deputy Prime Minister Aziz Abdukhakimov. “We can’t solve all the problems at once, but with dialogue we can understand each other better.”
A big Perspex cube showing the faces of children with disabilities was ‘activated’ with the help of Viktoriya Kurbanova, a 15-year old girl who uses a wheelchair; it lit up to welcome the audience downstairs to Activation 2.0, a series of stimulating talks that put the spotlight on disability.
Six powerful speakers took centre stage, bravely stepping forward to tell their experiences and ask for support to help bring disabled people in from the margins into mainstream society.
Shakhnoza Ikramova, mother to a child with Down’s syndrome and head of the Umnichka network of children’s development centres spoke movingly: “When your child is diagnosed, you don’t know where to go, how to live, you forget to breathe.” She hoped for increased early support to set children with Down’s syndrome on a developmental path that could lead to greater opportunities in later life. She felt that her son had missed many chances: “Realising that your child has no future is very traumatic.”
Rano Shodieva, Director for the Republican Centre for Children and youth with disabilities, and herself a celebrated actress, had parents who were deaf and is fluent in sign language.
“If I talk about the word “sun” I can tell you that it is beautiful, hot, burning…” She then stopped speaking to sign for the audience. “See? You don’t understand, do you? This is the same experience for people with hearing disabilities.” Although people with hearing challenges might be literate, without fully trained sign-language teachers she felt they were missing out on crucial education. She lamented that only a handful of people with hearing disabilities have entered university over the last 10 years.
Viktoriya, in a stylsih pink tracksuit, spoke of her dream to get out of her wheelchair. She illuminated the daily exclusion she experiences. “I never thought there would be places I wouldn’t be able to go without an elevator or a ramp.” Injured after a fall from a balcony, her parents sold their flat to pay for her treatment, and her mother has had to give up work to care for her. However, Viktoriya is grateful to be at home. She wished for financial support for parents so their children could stay out of institutions.
Nargis Mirzaakhmedova has a son with movement difficulties. She expressed how painful people’s reactions to him are. “When they see the wheelchair, they try to hide their children, as if his disabilities were communicable. It’s a lack of understanding. We need opportunities for people to see and hear us.”
Yana Chicherina, Team Leader of the UN Joint Programme for Persons with Disabilities then spoke of the challenges some disabled people face within law.
The last speaker, Sevara Mirsidikova, a pianist from the State Conservatory of Uzbekistan who is visually impaired, declared that opportunities for education were the ‘bridge to the outside world’ for people with disabilities. “Work is central. It is empowering.”
The Deputy Prime minister was visibly moved. “This is my first time taking part in a forum like this. Why don’t we do this more often? We should become more aware of things we didn’t know before. Decisions must be taken together.”
Helena Fraser concurred: “We shouldn’t just speak today, we must speak every day. It’s a long road, but next time I hope this event attracts thousands, and then millions until disability is not a frightening topic but one spoken about every day.”
After Activation 2.0 was over, the foyer buzzed as the crowd viewed the exhibits with greater insight.
“We don’t need extra things,” reiterated Shakhnoza Ikramova, “we just want existing doors to open up to us. I hope we have been heard today.”