Kim Samuel’s first-hand account of the treatment of children with disabilities she observed while visiting Serbia provides a vivid and disturbing portrait of why the institutionalization of these children is so tragically wrong. Kim shares the experience and also the path forward she created through partnership and advocacy to achieve meaningful change. Through these efforts, Human Rights Watch initiated a rigorous research effort as the first essential step to bring these issues to light and to press for change. In a seminal report released on June 8 in Belgrade, the story of these children has been revealed and finally their voices are being heard. Kim’s full piece is available below this video from Human Rights Watch:
As a passionate advocate for improving the lives of people with disabilities, I’m always eager to learn how different countries approach the obligation of inclusion. So, in late 2014, when I had the opportunity to travel to Serbia, I told my hosts that I wanted to know more about the programs available for Serbian children with disabilities.
That is I how I came to visit the Zvečanska Center for Protection of Infants, Children, and Youth in Belgrade. And that is what led to this week’s release of a searing report by Human Rights Watch, entitled, “It Is My Dream to Leave This Place: Children with Disabilities in Serbian Institutions.”
When I close my eyes, I still see the young boy, silent and alone, sitting in a custom-built plastic cage—a kind of homemade security embankment.
I see the girl with Down syndrome who was separated from other children, with just a pink plastic drinking straw to play with, and the teenage boy with soiled diapers in an adult crib, who had no feet and no prosthetics.
I see children who appeared to have gone days without bathing or changing into clean clothes, much less had the opportunity to play outdoors or go to school.
And I remember the way their hands desperately gripped mine, and their eyes went wide with longing, only to lower in sadness when they realized I couldn’t stay.
Most of all, I remember my shock upon learning that, while this institution was considered an orphanage, the majority of institutionalized children with disabilities in Serbia have at least one living parent. No child benefits from growing up in an institution. No child deserves to be shut away. And yet, this “orphanage” was full of children who had families of their own.
The staffers tried to reassure me that everything was fine; after all, the children were getting food, care, and a bed in a place the aides felt was safe. But I was horrified by this unnecessary, unjustifiable, and unacceptable treatment of children who had no voice, no power, no leverage, and no means to advocate for themselves.
I contacted my colleagues on the Human Rights Watch Advisory Committee for Disability Rights, and urged them to investigate. Their report, released in Belgrade on June 8, recaps four weeks of rigorous field investigation. Researchers visited five social welfare homes and three small group homes, and conducted extensive interviews with staffers at the homes, Serbian government officials, advocates and activists, outreach workers, and nearly 50 young people with disabilities and their families.
Their findings acknowledge some government progress in protecting the rights of children with disabilities in Serbia. But the overwhelming picture they paint is of systematic marginalization.
As HRW describes, “According to government data, nearly 80 percent of children in institutions in Serbia in 2014 had disabilities, up from 62.5 percent in 2012.” Once put into care, many children remain institutionalized the rest of their lives. Separated from their families and stranded with limited opportunities for human interaction, they are vulnerable to “stunted physical, emotional, and intellectual development” — further limiting their right to a decent, dignified human life.
In addition, as the report details, the children are often subject to neglect, abuse, isolation, overmedication, and lack of access to education and play—problems that stem in part from insufficient staff to provide attention beyond the most basic needs. When a society views a population as “less than,” it inevitably gives them less. And people with disabilities are too often cast aside as least of all.
Now is the time for Serbia—and the world—to end the institutionalization of children, and to ensure that children with disabilities enjoy their full and effective participation and inclusion in society.
First, we must recognize that institutionalizing children with disabilities condemns them to profound isolation, depriving them of the human contact, attention, and affection that every person needs to thrive. As J.K. Rowling—who founded Lumos, a charity dedicated to helping the 8 million institutionalized children worldwide regain their right to family life—has said, “That children need families, and not orphanages, is a very straightforward and intuitive notion. All the evidence shows that institutions damage children, sometimes irreparably.”
Second, we must halt pressure on parents of children with disabilities to give up their sons and daughters, and commit to providing sound professional advice and emotional and medical support. Beginning in the delivery room, the attitude of healthcare workers can tip the balance between hope and despair. No one should have to endure what one anguished mother told the HRW team: that after she gave birth, “it was as if I or my child did not even exist. Some medical nurses would try to comfort me by saying: ‘You will give birth to another child.’”
Third, we must acknowledge that lives won’t change unless mindsets change as well. It isn’t just about poverty: While the lack of resources clearly makes things harder, what causes families to institutionalize their sons and daughters is not simply being poor, but rather the stigma surrounding disability and the insufficient services and support that result.
Fourth, we must use every opportunity to spur governments to action, including, in Serbia’s case, the prospect of joining the European Union. As HRW recommends, respect for the United Nations Convention on the Rights of Persons with Disabilities should be included as “part of the accession requirements” for every EU candidate country.
Finally, as members of the human family and the family of nations, we must underscore the paramount importance of accountability. It is not enough to pass a law or reform. Words on paper must be enforced, and promises to ourselves and to one another must be kept. This is especially vital when we consider the rights of the most vulnerable among us. If we will not speak up and stand up and step up for institutionalized children with disabilities, then who will?