This story was first published in Balkan Insight on January 9, 2018.
by Jennifer Sheeren, Pristina
In impoverished Kosovo, the disabled community has been pushed to the back of the line – but a new generation of activists and NGOs is determined to change things.
A sixth-grade classroom at Naim Frasheri School in Pristina is jam-packed with children, way above its nominal capacity.
The room and its walls have been stripped of all excess furniture and decorations, to allow more than 30 students to fit in.
A young girl with a disability sits in the very back of the class, with her head on the desk, completely unengaged with the ongoing class and chatter of the other children.
“We just don’t have the materials or the resources to offer children with special needs a good education,” teacher Miranda Paqarizi admits.
She is the special education teacher for the 16 students with a disability in the school of over 900 children.
The school does not have the money to hire assistants for children with disabilities. General education teachers receive some training to educate students with disabilities, but they are already spread thin, occupied with their other pupils.
Kosovo is trying to rebuild itself after a tumultuous recent history, which involved a bloody war of independence in the late 1990s.
Despite some progress, it remains one of the poorest countries in Europe. The unemployment rate is over 30 per cent and the salaries of those in work are only about 360 euros a month.
Lack of a proper legal framework
Habit Hajredini, head of Kosovo’s Office of Good Governance, the office responsible for representing marginalized and minority groups, such as people with disabilities, says it will take time before the country turns into attention to people with disabilities.
“Implementation of laws is the greatest challenge facing people with disabilities. We just need time,” he says.
While Kosovo has adopted laws that impact on the disabled community, there is no overarching law addressing everyone with disabilities.
The law supports some disability categories but overlooks others. For example, the law does not even recognize Down syndrome as a disability.
The Office of Good Governance is working on a national strategy that would address education, healthcare, accessibility, and social services for individuals with a disability.
But people with disabilities do not have time to wait for laws and cultural attitudes to catch up with their needs, people with disabilities, their families and experts say.
“We have very segregated laws concerning persons with disabilities. Persons with autism, Down syndrome and intellectual disabilities are not supported by any law,” says Ilirjana Geci, head of the developing projects department at Kosovo Disability Forum, KDF, an umbrella organization that unites seven disability-focused NGOs.
Along with working to pass a law that would benefit all people with disabilities, the KDF is trying to improve the education system for pupils with disabilities.
“We know that most children with special needs are not attending school,” Geci says.
As of now, NGOs and civil society have to fill the gaps – providing services, resources and advocacy to the disabled community.
Engin Avci, 28, is the project manager who oversees a jam production service provided by Down Syndrome Kosovo.
He has secret handshakes with his friends with Down syndrome and teases them about their raspberry eating-to-packing ratio
“The only difference between us and people with Down syndrome is one extra chromosome,” he observes.
Caught between a rock and a hard place
Experts say that young people with disabilities in Kosovo face a no-win situation: they cannot get appropriate treatment in local schools but if they remain at home, they get no education whatsoever.
Geci and her colleague, Trina Xheladini, 25, have visited the homes of families who have children with disabilities and they were surprised by what they found.
“Parents really want their children to have education, they just don’t know what they can do,” Xheladini says.
“The philosophy of inclusion is very good, but what is the result? We don’t want only physical inclusion. They need peer support,” Enver Kurtalani, 48, signs through a translator.
The director of the Kosovar Association of the Deaf, Kurtalani is deaf and uses sign language to communicate.
Education is one of many problems that the deaf face in Kosovo. It was only recently that the government agreed to fund translators to accompany deaf people to doctors’ appointments.
People with disabilities face even greater problem after school, when they try to find jobs and fit into society.
“We have a law that says every 50th employee should be someone with a disability but … fines [for non-compliance] are really small and employers would rather pay the penalty than employ someone with a disability,” Kurtalani signs, moving his hands with fervour to express his displeasure with the current system.
There are some signs of progress. Kafeteria X21 is a local café provides job training to adults with Down syndrome.
“Staff at the café receive a small stipend each month, but we see the café more as a training ground than as a commercial undertaking,” says Songuel Kayabasi, representative of the Center for International Migration and Development, CIM, at the organization Down Syndrome Kosovo, DSK.
She describes how an inappropriate education system for people with disabilities results in bleak prospects for employment.
But she also refuses to accept the way things are. Kayabasi has secured several positions for people with Down syndrome at the airport. Without the support from DSK, these people would have stayed at home, unemployed.
One of these employees is Arlind Beqiri, “I like to spend my pay cheque on cevap and on things for my house,” the 22-year-old says, referencing the popular Balkan meat dish.
His mother, Besime Beqiri, 49, sits across the table from her son and smiles at his response.
“The doctor didn’t have good things to say when Arlind was diagnosed with Down syndrome,” she says, referring to the lack of hope for the future of children diagnosed with disabilities.
“I had to think positively to give him the best life,” she says. She volunteers often at DSK to repay her gratitude for what the organization has done for her family.
Access means more than physical access
Even if Kosovo adopted laws that benefited all people with a disability, it would not necessarily endure them access to education, healthcare, and employment.
“Accessibility is not just physical access,” says Rinor Gashi, 25, director of programs and activities at the NGO HandiKOS. When he was six, he was injured during the war in Kosovo and now he uses a wheelchair.
People who use wheelchairs in Kosovo often cannot use public transport or get into buildings. They also lack access to information that would allow them to advocate for their rights.
HandiKOS holds workshops for individuals with disabilities to inform them how they can make effective change in their communities.
KDF has a similar project, where they train groups of people with disabilities in each municipality to monitor implementation of laws that affect people in this community.
“People with disabilities are reluctant to go outside both because of access issues but also because of the cultural view of disability. They are seen as problems, instead of assets, to society,” Gashi says.
Organizations like DSK and HandiKOS are working to empower disabled people by welcoming them into society; with exposure comes understanding.
Gabriella Tiholova, 18, has long straight hair, checks her phone often, and has all the signs of a typical teenager, except that she chooses to spend her time after school volunteering at DSK.
She says that kids at her school who have a disability got bullied and ended up leaving. Interacting with the employees of DSK has changed her own view of people with disabilities.
“Everyone at Down Syndrome Kosovo is so motivated to work,” she says with admiration. “Even though they have a disability it doesn’t stop them.”