More than half a million Belarusians have disabilities, and the problem of the life of such people in our country is especially acute. Lack of ramps, parking spaces for disabled people, difficult living conditions, difficulties with medical care – this is far from a complete list of what Belarusians with disabilities face, for which the authorities “have no money”. On the occasion of the International Day for the Rights of Persons with Disabilities, we will tell you about how the state leaves special citizens to their fate and what “Our House” is doing to make their life easier.
Cases when the authorities refuse to fight for the life of Belarusians with disabilities are not uncommon. Perhaps the most famous is children and adults with spinal muscular atrophy (there are about 150 such people in the country). Until five years ago, this genetic disease slowly atrophied all muscles and people died. Several medicines are now available at the same time. In European countries, they are distributed free of charge under insurance. Belarusian officials, however, offer only palliative care – in fact, death alive. And people, to survive, have to either collect more than 300 thousand dollars for one injection of a life-saving drug (and they need to be injected all their lives), or leave. The second option is most often chosen. The experimental drug Zolgensma is even more expensive at over $ 2 million. The country, which allocated more than 20 times more to turn off the Internet in August 2020 ($ 56.4 million), does not help with its purchase. Families are forced to hope for the help of kind people or luck in the manufacturer’s lottery. Mass media talk about successful cases: babies Dasha Shepetovskaya, Danik Denisova and Sonya Zhagun were injected with a drug in Belarus. However, to regain the skills lost due to SMA, rehabilitation is needed – there are no specialists in the country, and the families of the children are again forced to emigrate.
People with disabilities must fight with the state not only for medication or rehabilitation, but also for everyday items that can make life easier. Belarusian disabled people with problems of the musculoskeletal system suffer from the inability to leave the apartment: there are no ramps, there are no elevators, it happens, too, in cities, especially small ones, you cannot pass because of the curbs, you cannot climb onto the bus on high steps. Social pensions hardly allow one to survive – 300 rubles (about $117) are received by a disabled person of group I (with the most serious health problems). Disabled group II – from 232 to 259 rubles ($90-100), disabled group III – 204.95 rubles (about $80). You cannot do without the help of working relatives. And orphans are forced to while away their lives in nursing homes.
“Our House” has been dealing with the problems of people with disabilities for a long time. In 2012, activists took part in the “Children for School” action in Gomel. Clothes, shoes, rucksacks, bags, writing material and stationery were collected and given to orphans and disabled children.
In the same year, “Our House” defended the right of disabled people in Mogilev to use the services of a social taxi. This service is not provided to disabled persons of II and III groups. The volunteers collected signatures under the collective complaint of city residents and demanded that the chairman of the Mogilev city executive committee, the city Council of Deputies and deputies of the House of Representatives provide the transport service “Social Taxi” to certain categories of citizens.
In 2015, thanks to the efforts of our activists, a ramp and a handrail appeared at the post office No. 35 in Gomel. A letter with a corresponding request was received by the administration of the Zheleznodorozhny district of the regional center – and the result was not long in coming. “Our House” received gratitude not only from people with disabilities, but also from young mothers with children, because it has become much more convenient to roll the stroller into the post office.
In 2016, “Our House” monitored parking lots near shopping centers in Slutsk to find out if there are parking spaces for disabled people. The result turned out to be sad – none of the three shopping and entertainment centers had any sites marked with a special sign. The activists sent a letter to the head of the traffic police. The response indicated that the directors of the shopping centers had been instructed to apply the appropriate markings in the parking lot. A couple of months – and two parking spaces for disabled people were equipped at one of the large stores, another one made the markup in the work plan.
In the same year, an electronic appeal was sent to the Slutsk regional executive committee regarding the high side stones at the pedestrian crossing opposite two houses on Bogdanovich Street. The result appeared already a month later. Employees of the Slutsk Housing and Communal Services replaced the curbs with lower ones, thereby increasing the convenience of roads in the city for people with disabilities.
In 2017, Bobruisk hosted a performance by activists called “Curb as Everest”. Its purpose was to show citizens and city authorities problems with the road surface and the accessibility of pedestrian areas. On the route with frequent curbs, steep descents from the sidewalks, we walked with a baby carriage. “Our House” concluded that it is dangerous for a wheelchair user to travel along this road. As a result of the experiment, letters were sent to the first deputy chairman of the Bobruisk city executive committee and the head of the traffic police of the Bobruisk city executive committee with a request to eliminate the shortcomings.
One of the most serious examples is the case of Slavgorod activist Anzhelika Kalatozishvili. The woman received a disability due to a medical error. Suspecting cancer, the doctors removed her healthy organs, then her legs failed, and then due to improper treatment, her bones completely collapsed, and she got into a wheelchair. Neither the IC nor the Ministry of Health did anything about the doctors who made a mistake. When Angelica made her story public, they began to persecute her, health workers filed a complaint against her for divulging medical confidentiality. In July 2018, her husband, a citizen of Georgia, was detained under Article 328 of the Criminal Code – and he was the only person who could help her in everyday life. In 2019, he was sent home. ICCI “Our House” drew the attention of European politicians to the problem. MEP from the UK Labor Party Julie Ward has prepared an appeal to the EU High Representative for Foreign Affairs and Security Policy Federica Mogherini.
In 2020, repressions against Anzhelika Kalatozishvili continued. In winter, the heating in her house was turned off, explaining this by the burning of firewood. In the summer, they were accused of extremism for publishing a link to the film “Lukashenko. Criminal materials” in a social network. It is noteworthy that this video was included in the list of extremist materials several months after its publication on the activist’s page. ICCI “Our House” supported Angelica at the court sessions.
It is scary to be disabled in modern Belarus. This does not save from the persecution of the security forces, from prison, fines, it is not a guarantee that a person will be treated with dignity. People with disabilities are as powerless before the system as ordinary healthy Belarusians. The opposite is impossible if the government spends money on prisons, weapons, an army of security officials. But we believe that after the fall of Lukashism, the situation will change, and our people with disabilities will receive the right to live, not survive, receive quality care, and not suffer from humiliation, do what they love, and not sit within four walls, work.