Iryna Dmitrievna, 59, is from Sviatlodarsk, a government-controlled town in war-torn eastern Ukraine. She has had a disability since childhood and spends most of her days in bed. When she needs to go out, she calls for someone to come and assist her into her wheelchair. She smiles often and says she is an optimist.
"I am grateful for help. But sometimes it’s hard ... The attitude here is: if you want to be left in peace, go back home. But where is home? Everyone who could, who had a place to go, had already left."
The ongoing war in eastern Ukraine has divided people’s lives there into “before” and “after.” For Iryna, “before” was living independently in her own flat in Donetsk region. Life was not easy, but she had a network of friends she could rely on to help.
In 2015, when Sviatlodarsk came under heavy shelling, Iryna was alone in her apartment unable to flee until a group of volunteers from a local church helped her evacuate, carrying her out of the building where she lived on the fourth floor:
“When the explosions started, many people on my street left. I was alone, couldn’t even get to a bomb shelter. They [volunteers] came to my house and picked me up by arms and legs. They carried me outside in their arms. They saved my life.”
Thus began Iryna’s “after,” where she was forced to leave her home and relocate to a “collective center” – an emergency accommodation for people fleeing the conflict.
I met Iryna in the town of Sviatohirsk, in government-controlled territory, in late October 2019. My colleague and I spoke with her in Sviati Hory, a former recreational facility that now accommodates people displaced by the war. This privately-owned facility has a nondescript, five-story building that has become a temporary home to 190 people – most of them with physical disabilities. Iryna has been living there since 2015 and, although her life is no longer in immediate danger due to indiscriminate shelling or landmines, she and other residents continue to face severe obstacles accessing basic services and health care. For them, every day is a struggle.
The war in eastern Ukraine between government forces and Russia-backed armed groups started in 2014 and continues today. It has displaced close to 1.5 million people. Displacement happened in waves, as hostilities spread through Ukraine’s Donetsk and Luhansk regions. Many people fled to nearby cities and towns, hoping the fighting would soon stop and they would be able to return home. Others traveled further, to central, western, or southern Ukraine.
Evacuation and support services were often not accessible for people with disabilities and older people, who, throughout the years since 2014, have had little say in their relocation.
To address fast-growing displacement, local authorities in conflict-affected areas came up with solutions for emergency accommodations for the displaced. Many were set up in 2014 and 2015 in former resorts, hotels, churches, recreation centers, and similar spaces. Today, displaced people are still living in some of these facilities, even though they were meant for seasonal rather than long-term, year-round use. Many, like Sviati Hory, do not have adequate water and heating services and were not designed to be accessible for people with disabilities. Some have no ramps, accessible showers, toilets, or working elevators. And while most displaced people were able to take advantage of these facilities as a temporary solution for a short period of time and move on, many people with disabilities had no choice but to remain in them, some for years.
Natalia Stazilova is a project coordinator with Slavic Heart, a charitable foundation that distributes humanitarian aid and provides crucial psychological and legal services to displaced people. She told me that 70 percent of current residents of Sviati Hory have physical disabilities. Most residents had permanent housing in the past, which was either damaged or destroyed in the conflict or is located in dangerous areas close to hostilities. Stazilova, her colleagues, and other local and international groups providing assistance to displaced persons also said that as the fighting became less intense, international aid organizations narrowed their focus to providing humanitarian assistance to the 20 kilometer-wide area along the 500 kilometer “line of contact” that separates the warring parties. This has left gaps in assistance and protection for people living farther away from the line of contact but still impacted by the conflict, like Iryna and the other residents of Sviati Hory.
“These people are abandoned. Nobody wants them,” Stazilova said.
According to the latest United Nations aid agency’s overview of humanitarian needs in eastern Ukraine, 1.1 million older people and 416,000 people with disabilities are among the 5 groups bearing the heaviest brunt of the conflict. The document notes “lack of access to basic services” among the main humanitarian concerns.
These concerns are visible and deeply felt by people with disabilities who live at Sviati Hory. As my colleague and I were able to witness, everyday life is extremely difficult and they face great obstacles accessing even the most basic things, like toilets, showers, adequate medical care, public transportation, and accommodations allowing them to move around independently within the facility.
Living Conditions in Sviati Hory
“Things were very hard for me here from the beginning,” said. Iryna. “When I first got here, they had no ramps, no way to get around in a wheelchair. Last winter, there was no heating here at all. It was 7-8 degrees Celsius (44 degrees Fahrenheit) in our rooms. I had to
keep my portable stove on the whole time so that I didn’t freeze.”
The facility has only 1 shower for its 190 residents and it is not accessible to people using wheelchairs because of a high threshold between the hallway and the shower area. A boiler was installed in the shower several months ago, but there is no heating in the shower room and no hot running water in the rest of the building. The building now has heating, but the administration sometimes keeps it at a low setting which can make people with limited or no mobility and older people, who tend to be more sensitive to cold, feel uncomfortable.
All of the 17 people with disabilities we interviewed at Sviati Hory had been there for three years or longer and had similar concerns: lack of heating and hot water, difficulty getting medications, not having enough money for food, and no place to cook it. The building now has ramps, but those who use wheelchairs spoke about difficulty getting around and the lack of a working elevator.
Yana is 44 and is looking after her 5-year-old son and a 64-year-old mother who has a spinal cord injury and cannot move her lower limbs. “We have a bath day every Wednesday. This is what it looks like: I boil water in an electric kettle, fill a small basin, put it right here on this bed and wash everyone with a washcloth,” Yana said. She also said that there is only one washing machine for the entire facility.
Alla, 60, is sharing a room with her daughter, Lyubov, who is legally blind, and her 18-year-old granddaughter, who has cerebral palsy and epilepsy. Their family has been living in Sviati Hory since 2016. “It’s very, very tough for us here,” said Alla. “No food is provided, [yet] we can’t cook anything, there is only one shower for all of us, but the shower area is not heated so it is freezing in the winter. We can only bathe my granddaughter once a month.”
Psychological Trauma, Lack of Support
Persons with disabilities often face unique barriers attempting to flee to safety in an armed conflict. When fighting intensified in eastern Ukraine, the evacuation process fell mostly on the shoulders of nongovernmental associations and groups for people with disabilities. According to Viktoria Nazarenko, secretary general of the National Assembly for People with Disabilities and Nadezhda Palamarchuk, head of Donetsk Group for People with Disabilities, civil society groups that organized evacuations for people with disabilities did not receive any state help, and did not get “a single hryvnia” from the state.
The people we spoke with at Sviati Hory told us they’ve experienced trauma and stress from the chaotic evacuation process, from having been exposed to the fighting, and from losing the support network they had at home. Lyubov, who is 36 and is almost blind, said:
"They evacuated us from Makeevka at the very last moment, on August 12, 2014. They said if we didn’t leave immediately, we were going to die. There were explosions all around. They [staff from a local NGO centre for persons with disabilities] brought us to a train station but the trains had stopped running. I will never forget how all of us were lying on the train platform for a long time, right on the ground, face down."
Many residents spoke of being lonely and having no community with which to socialize, feeling isolated and trapped. I particularly remember Sasha, 61, telling me about his passion for dancing. Before the war, he participated in and organized wheelchair dancing competitions in Donetsk. “I had so many friends,” he said, sitting on the bed in his small room, his wheelchair with red flames painted on it standing next to him. “People asked me to organize dancing events. I was having a blast, I was doing what I loved, despite having one leg. And now I am in a rut. I feel like I am slowly wasting away.”
Difficulties with Accessibility
Sviati Hory has almost no accommodations for people with disabilities. Many residents can only get around in a wheelchair. The building has an elevator, but when we were there, it wasn’t working. Some of the people we spoke with said it has always been broken, others said that the management simply didn’t turn it on. Yulia, 65, spoke about “enormous difficulties” her husband faces when he needs to use the bathroom because his wheelchair can’t get over the high threshold between the room where they are staying and the bathroom. She also said. “They have an elevator, but they don’t turn it on.”
Lena, 47, has 2 daughters. One is a child who has cerebral palsy. Lena’s older daughter, who is 18, has spinal muscular atrophy. Lena said:
“Before the war, we had a house that was outfitted for the needs of our children. My older daughter could feel more independent there. Here my husband can’t work because I can’t take care of my daughter alone. He helps me pick her up to take her to the toilet, turn her over during sleep, help wash her. Out toilet is too narrow for the wheelchair to fit through the door, so we have to carry her everywhere.”
Medical Services, Schools, Access to Transportation
Many residents told us that because the facility is so remote, they can’t easily access medical help. A nearest hospital is located in Sloviansk, approximately 36 kilometers away, and there is no accessible mode of transportation available for people with disabilities.
There are only three family doctors in Sviatohirsk. All undiagnosed patients or those with serious illnesses are referred to the hospital in Sloviansk. From time to time, medical specialists visit Sviatohirsk, but residents told us that it’s hard to predict when a certain specialist will come and “next to impossible” to get an appointment.
Lena described her family’s experience:
“Last winter, my daughter spilled boiling water on herself in the middle of the night and we called the family doctor. The doctor took two days to arrive and when she got here, she scolded us for not treating her wounds better.… There is no pediatrician here or other medical specialists. From time to time, a neurologist comes from Sloviansk. Occasionally a surgeon. Sometimes an ear, nose, and throat doctor.… In any case, there are only ten coupons available for each specialist and that is for the entire city, not just people with disabilities, so it’s next to impossible to get an appointment. Sometimes you get a coupon, but the doctor doesn’t come, and you have to wait for another month. Sometimes no [specialist] doctors come at all for several months.”
Lena’s younger daughter and other children who use wheelchairs and live at Sviati Hory do not go to school because the local school does not have ramps for wheelchairs. Instead, teachers from the local school come to the facility.
Sasha also described his difficulties accessing quality health care. He said that a doctor told him to see a neurologist several months ago, but he could not find any transportation to get to his appointment – he cannot afford a taxi, and the bus that goes from Sviatohirsk to Sloviansk is not accessible to wheelchair users. Sasha had to call an ambulance once, when kidney failure caused him acute pain. The ambulance took more than one hour to arrive and left after giving him a shot for the pain. He later had to make his own arrangements to go to the hospital for treatment. He said “Sometimes it feels like this: if we all get sick and start dying off one by one, no one will come to help.”
Iryna told us that in order to obtain a medical certificate necessary to purchase her medications at a special discount rate for people with disabilities, she has to go to Sloviansk. Because she can only move around in a wheelchair, she can’t use the bus and the cost of taxi is prohibitively high – 400 hryvnas one-way (approximately US$16). Iryna’s pension is 1564 hryvnias (approximately $63) and she spends around one-third of that on medications. If she gets sick, Iryna can call a family doctor who can consult with her over the phone, call an ambulance, or ask a volunteer from Slavic Heart to drive her to a hospital.
"My daughter has cerebral palsy. She can’t hold her head up and needs to be propped up or wear a brace the whole time. She also has epileptic seizures. She needs specialized care, but none is available here. The closest place to get such care is in Kharkiv (approximately 170 kilometers from Sviatohirsk), but we can’t get there anyway. When she gets ill, we call a doctor, who might even make a house call, but it is not going to be a specialist, just a regular therapist. And nothing here is adjusted for our needs. For example, right now she has a sore throat and needs an inhalation treatment, but I can’t even set that up in this room."
Threat of Eviction and Invasion of Privacy
People with disabilities living in Sviati Hory pay between 500 and 1300 hryvnas (approximately $45-50) in rent to the administration of the facility. The local authorities pay for utilities, including electricity and heating.
Many people I spoke to said the facility’s administration frequently threatened to evict them, either claiming that their rooms were not clean enough or after they complained about lack of heating, the lack of a working elevator, or other issues. They also said that the administration frequently intruded into their rooms, which made them feel unsafe and unwelcome.
“The manager can come in at any time to check your room,” Alla, 60, told me. “There is no vacuum cleaner, but they demand we keep our rooms clean. If your toilet seat is slightly dirty, they can immediately bring you papers telling you that you are getting evicted.”
Yana, 44, echoed that: “The administrator can barge in at any time and start looking around, doesn’t matter if you are busy or asleep. They treat us here like third-class people – not even second, but third.”
People spoke wishfully about returning home but did not consider it a real possibility, due to lack of safety or because their houses or apartment blocks had been damaged or destroyed.
Lena said: “I really wish we could return home – but only if things were the way they were before we left.”
What Can Be Done
Sviati Hory is just one example of a collective center providing shelter and other assistance to displaced persons. There are more than 200 such centers around the country.
The internally displaced people living in them have the same human rights as everyone else in Ukraine and enjoy the same protection as other civilians under international humanitarian law. Under international standards, the Ukrainian government has a responsibility to provide displaced people with protection and humanitarian assistance: food and water, shelter and clothing, essential medical services. They should be protected from inhumane and degrading treatment. Under the Convention on the Rights of Persons with Disabilities, Ukraine has an obligation to ensure people with disabilities have equal access to transport, the physical environment, information and communications, and other facilities and services that are open or provided to the public. Children with disabilities have the right to inclusive and quality education with their peers.
To Elena, 66, who lives with her 11-year-old granddaughter with cerebral palsy, these rights seemed utterly remote. “We live like we are homeless” she said.
For Elena and everyone else at Sviati Hory, a good start in making these rights a reality would be for the authorities to consult meaningfully with residents there and ensure that they have access to heating and essential health services, accessible water and sanitation facilities, adaptable home environments, accessible transportation, and inclusive schools. The authorities should ensure that the administration of the Sviati Hory facility respect the rights of its residents. With these steps, they can help connect the “befores” and the “afters” for everyone living there.
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