Black balloons and a “panichida”, that is, a funeral service. It’s how on April 18 the parents of children with disabilities will welcome EU Ministers of Social Policy, set to convene in Sofia under the Bulgarian presidency. On April 11 hundreds of adults with disabilities staged a protest against reforms in the disability assessment system. In fact, many disabled people in Bulgaria are tired of fighting for a “normal” life. Even though a lot has changed since the fall of communism, their survival remains an uphill road.
Unable to get out of the house. “The first problem is getting out of the house”, Vanya Pandieva, disabled, activist for the Independent Life Centre, told SIR. “Most buildings in the Country cannot be accessed by people who have difficulties walking, there are at least 7-8 steps from the lift to the ground floor. You then venture on the pavement that is too high and you reach the underground, where the lift is out of order.”
Architectural barriers are a widespread obstacle.
It’s a reality difficult to address on a daily basis, although it improved over the years. “There are new buses and trams and renovated sidewalks in the city centre, especially made and accessible to the disabled”, she said. Otherwise, Vanya needs two people to lift her wheelchair to go to work.
Individual evaluation. “In order to be integrated and lead a normal life disabled people – she said – need an individual evaluation by the competent authorities based on their true needs.” The current directive provides for compensation and services according to the percentage points of recognised disability. “For example, the State covers two maintenances of my electric wheelchair in a ten-year period, but Sofia’s streets are bumpy and full of holes. How can I manage?”, she said. “While there could be a possibility of going to spas for free, but I never do.”
Vanya firmly believes that if people with disabilities in Bulgaria are helped become an active part of society with assistance, structures and accessible environments, the whole population would benefit from it.
“More people will enter the job market, including the parents of disabled children, often doomed to take care of their child 24 hours a day, renouncing their profession and their private life.”
“What will happen next?”. The story of Stanislava Ilieva, mother of sixteen-year-old Victoria, affected by Charge syndrome, a rare genetic disorder, said: “My greatest fear is what will happen to my child one day, when her father and myself will no longer be there for her”, she said. The other problem is becoming of age, as the State provides for 500 euro monthly benefits to youths under 18, while the so-called “adults” receive disability pensions of only 120 Euros. The parents of disabled children thus staged the April 18 protest. Some of them consider it a veritable “genocide of people with disabilities.”
Slow progress. However, things are slowly changing. There are new disability day care centres, funded by municipalities but run by non-governmental organizations, such as Caritas.
The ecclesial body runs four of these centres in Bulgaria: in Sofia, Russe, Belene and Weselinowo, near Yambol.
Victoria has been attending the Russe centre for the past 10 years. She is assisted by a psychologist, a speech therapist and a rehabilitator. “We witnessed remarkable changes. Here we were not told what our daughter cannot do but what she can do”, said her mother, Stanislava. “Caritas centres are no only therapeutic centres, they also offer disabled children and their parents the opportunity to socialize”, said Caritas Secretary General Emanuil Patascev. “We try to give our support and make these people feel that they are not alone and that they can do many things in their life.”
When there’s no money… On their part, authorities claim they are doing everything possible and that the problem is the money, since Bulgaria is the poorest country in the EU. But people with disabilities are not happy with this answer. Parents’ protests are taking place for the sixth year running. Vanya is convinced that “economic resources are there, they just need to be allocated better, mindful of the individual needs of people with disabilities and adopting a set of necessary resources.”
She remembers that “20 years ago it was unusual to see people in wheelchairs in Sofia”, while Stanislava recalls that some mothers kept their children at a distance so they would not play with Victoria.
“But now things are changing…”. Vanya added: “It takes little for a disability to turn into a fragment of life instead of being its overwhelming centre.” “Let us remember Stephen Hawking, had he been born in Bulgaria it would have been very hard for him to become a world renowned scientist.”