Jakhangir is like the sun for us!
Story told by the parents
Our son Jakhangir came extremely close to living a life where his ambitions for himself, and others’ expectations of him, might have been greatly diminished. My wife and I fought to make sure he is treated like every other child, and we’re proud to say that now in his second year of mainstream school, he has exceeded everyone’s expectations and even surpassed his classmates!
Some parents can’t understand how a boy with Down Syndrome could be smarter than their own children, but we know why, and so do Jakhangir’s classmates and teachers.
Nine years ago we were ecstatic to learn we were going to have our first child, and everything was perfectly normal throughout pregnancy. It was during Jakhangir’s earliest years that we discovered he had a developmental delay, with some trouble focusing his mind, but no other unusual health problems. We knew we had to carefully plan ways to ensure he’d have the best education and the brightest future.
Although things are slowly changing for the better, today in Uzbekistan there is still a disconnect between how parents like my wife and I see their children, and how most of society views disability.
In Jakhangir we see great potential and strength, and some weaknesses that must be embraced and accepted. Who doesn’t have shortcomings that have to be worked with! But beyond our loving home, there are doctors, caregivers and institutions eager to prescribe and define our son with a “disability” label. They are too fast to assume what our son can and can’t do.
So, we faced a consuming dilemma: to seek specialized support for Jakhangir outside our home, or trust ourselves to give him all the extra assistance he might need? From the beginning, we had avoided situations where Jakhangir’s path may be set by others.
In his third year, we could already see Jakhangir’s considerable intellect, and thought enrolling him in a specialized preschool would nurture his abilities, but we were wrong. The effect of the school’s attitude towards our boy and his peers was immediately clear. Far from having more room to grow, over just two weeks at the preschool we saw him lose confidence daily.
It was obvious that he couldn’t stay there, so we channeled our energy into creating a home environment that would give him and his little sister the strongest foundations for their future lives.
At 7 years, Jakhangir became Uzbekistan’s first child with a disability to go directly into mainstream school, without completing a specialized preschool programme. We had to insist on his enrolment, and of course, we worried if he’d transition well into the new environment, but Jakhangir was quickly accepted by his classmates and loved by his teachers.
With some help from a tutor in 2020 when schools were closed, Jakhangir discovered the subjects he loves most – human sciences, information technology and poetry. His teachers are amazed by his memory and creativity, and his school report shows he is one of his class’s best students!
Jakhangir’s favourite things about school are his teachers and friends. Like every child and every person, our son just wishes to be accepted for who he is by those around him.
Of course, we can’t tell what the future holds for our boy, we can’t predict what obstacles he might still face, but given an equal chance to achieve success, we think he will go extremely far.
Uzbekistan’s attitude towards children and adults with disabilities is transforming, because of the considerable work being undertaken by UNICEF and our fellow UN agencies and national partners.
Meeting the basic rights of children with disabilities to learn, play and grow alongside their peers will greatly improve their quality of life today, and give them more opportunities to achieve happiness as adolescents and adults.
Uzbekistan is a party to the UN Convention on the Rights of Persons with Disabilities, and since the end of 2019 the ‘Social Model of Disability’ has been steadily adopted nationwide. This model suggests people are limited only by society’s barriers, not by the disability itself. Still, changing people’s attitudes and breaking down stigma takes considerable time and effort, and is happening at different rates across Uzbekistan. While some children with disabilities now have broader horizons, given the right assistance from parents and teachers, others with less supportive families or living in isolated areas face enormous hurdles – the greatest being their ‘invisibility’ within society.
Children with disabilities need parents who have unshakeable belief in their strengths and abilities, willing to champion their rights to access the same quality of education and opportunities as other children.
Into 2022, UNICEF is continuing its work on the development of inclusive education in secondary schools throughout Uzbekistan, change how teachers, doctors and parents see disability, and create new channels through which gifted children like Jakhangir can achieve their ambitions.
