Institute for War and Peace Reporting | Giving Voice, Driving Change
Down Syndrome Still Stigmatised in Armenia
Children with Down syndrome in Armenia face a difficult future, with around half of them cared for in state-run institutions rather than at home.
Experts and parents say more needs to be done to help support families with disabled children and allow them to stay together. According to the ministry of labour and social affairs, last year 45 newborns with Down syndrome were registered in Armenia, and 22 of them ended up in children’s homes.
The issue was highlighted by the media attention given to the case of baby Leo, who was born in January to Ruzan Badalyan from Armenia and Samuel Forrest from New Zealand.
The couple separated a week after Leo was born with Down’s syndrome, and Forrest claimed that his wife of 18 months did not want to raise the child because her family deemed the condition shameful. However, Badalyan told reporters that “Armenia has no resources to help children with disabilities, as there is no support from the government, and I cannot raise a child with special needs here”.
Forrest has since launched a crowdfunding initiative on the internet to bring Leo to New Zealand so he can raise him there.
The story made headlines around the world and caused widespread debate in Armenia.
Zaruhi Batoyan, the chairman of disability charity Bridge of Hope, said lack of public awareness was a major problem where Down syndrome was concerned.
Armenia has no services to support parents dealing with the shock of diagnosis or help themmake decisions about their child’s future. Healthcare workers often simply advise parents of children with Down syndrome to put them in an institution.
Varduhi Aramyan has a young son with Down syndrome. She told IWPR that mothers who had just given birth to a disabled child needed intensive psychological support as well as accurate practical information. If they realised that caring for a baby with Down syndrome was much like looking after any child, they would not be so afraid, she said.
Aramyan recalled the stigma she faced after the birth of her own baby.
“When we were about to be discharged from the hospital, the doctor asked us, ‘Are you really not going to give away your child? Will you raise him yourself?’” Aramyan said. “Even when we were still in hospital, people came up to us and said, ‘He will make you suffer all his life.’”
Karine Khachatryan, an expert with the labour and welfare ministry’s department for women and children, told IWPR that even when children was not given up, they were often hidden away at home.
Harutyun Balasanyan, director of the Kharberd orphanage just outside Yerevan, which caters for children aged between six and 18, said parents had to bear the burden of raising and educating disabled children all by themselves. Society needed to play a more supportive role to prevent such families being isolated, he argued.
“Unfortunately, this culture doesn’t exist in our country,” he said. “When children with mental development issues are not cared for in the right was, behavioural problems frequently arise. The neighbours often start complaining to the authorities that their children cannot sleep or play safely in their yard because a disabled child bites them or breaks everything in sight. The parents are then forced to put the child in an orphanage.”
According to official statistics, Armenia has some 8,000 children with disabilities. Of these, 560 are in homes for children with special needs, such as the Children’s House in Gyumri, which cares for children up to the age of six, or the Mary Izmirlyan orphanage in Yerevan.
SLOW PROCESS OF CHANGE
A government policy in place since 2010 has focused on reducing the number of disabled children in homes and integrating them into the community. However, changing public attitudes towards people with disabilities is a very slow process. (See Armenia Moves Towards Integrated Schooling.)
Meri Poghosyan, the head of UNICEF’s education programme in Armenia, believes that old-fashioned views will only change once people see disabled people living alongside them, for example studying in mainstream schools.
“They will see children with autism and realise that they can accept them as a classmate and as a friend, as a human being, and then they’ll stop seeing them as a disabled or Down syndrome person, and instead see Poghos or Petros, who has a disability,” Poghosyan said.
There are already some specialised day care centres for young people with disabilities, such as Prkutyub (Salvation) in Yerevan, which has operated for the last 18 years. About 70 young people and adults with disabilities attend each day, providing a much needed respite for families and carers.
The centre’s director, Arpine Abrahamyan,says it accepts people with even severe disabilities, as long as they are between 16 and 35 years old.
Abrahamyan explained that the children who attend her centre enjoy various activities and excursions before returning to their families in the late afternoon. In care home, children are often kept locked up, she added.
Another educational and rehabilitation centre, My Way, opened last year and has more than 100 service users, including people with learning disabilities.
CHILDREN ENTITLED TO BETTER FUTURE
Sirushik Papyan, 13, was born with cerebral palsy and her 14-year-old brother Samvel has autism. However, the siblings have not only managed to defy stereotypes but also integrate into society.
Their mother, 41-year-old Mary Martirosyan, told IWPR that she has never felt ashamed of her children’s special needs.
Martirosyan refused her mother-in-law’s demands to put the children in an orphanage, and kept them with her even after her husband walked out.
Life with disabled children is not a tragedy, she said.
“My daughter, who has musculoskeletal problems, was easy to place in school, but my son faced a lot of hostility,” she explained. “However, things have changed for the better. Now, even if Samvel stands up, walks out of a lesson or makes noises, the children are used to it and they aren’t mean to him.”
Martirosyan is nevertheless thinking about leaving Armenia, as she worries what difficulties her children will face in future.
“Unfortunately, Armenia is not for people like this. My son has an exceptional IQ and may want to study in the future. But the environment here and other young people are not ready for it… even adults are intolerant,” she said. “And my children are entitled to a better future.”
Gayane Mkrtchyan is a correspondent for Armenianow.com.
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