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Surviving the Russo-Ukraine War with Disability

An activist shares her first-hand account. 

Pictures: Tetyana Herasymova
Date:

“When my mom told me that the invasion started, I had no other option than leave,” Tetyana Herasymova explained, “It was a no-brainer.”

She said it matter-of-factly, with a hint of sadness in her voice.

“I knew that for me, there was no going back, and I had to make that transition,” the woman continued, “If I didn’t leave right away, I would never leave.”

Tetyana Herasymova — or Tanya, for short — is an activist. She is a project coordinator at Ukraine’s Fight for Right, an NGO that advocates for the rights of people with disabilities.

When Russia launched its full-scale invasion against Ukraine, Herasymova’s organization added a new, very important project, to its portfolio: evacuating disabled people trapped in the war zone. In less than five months, the team rescued more than two thousand people. Requests for rescue keep coming — there are more than a thousand pending.

“Everything was very chaotic in the beginning, and we didn’t announce that we were evacuating anyone,” Herasymova said, “But we saw that nobody else was doing it, so we had to fill the gap.”

“I DID NOT WANT TO LEAVE” 

“I use a wheelchair, and I am from Kamianske in the Dnipro region,” Herasymova began.

She is a young woman in her early thirties, with bright red hair and a friendly face.

“I was preparing for the full-scale war, so I had my emergency suitcase ready,” the activist continued, “When my mom woke me up on Feb.24, saying that the invasion started, I knew we had to leave.”

Herasymova used to live with her mother on the fourth floor of an apartment building. Her native Kamianske is less than three hour-drive from Donetsk region, where the fighting between Russian and Ukrainian forces has been heaviest. The city, with its more than 200,000 residents, does not have a single bomb shelter that is accessible for wheelchair users. Herasymova knows this because she asked the city council. Many locals who live with a disability didn’t have that information — it was not widely communicated.

“My danger level was that I could either stay in my apartment for good or manage to get into a bomb shelter and sit there until the end of the war,” Herasymova said.

Her mother, who also lives with a disability, moves around with crutches. It was difficult for both women to get out of the city and reach safety. On Feb. 25, a second day after the invasion, they managed to get on a train going to Lviv, a large center in Ukraine’s very West. The journey took 22 hours. The train was overcrowded and completely dark.

“It was before the panic reached its peak, but the fear was spreading quickly,” Herasymova said. A few days later, it became nearly impossible to find train seats, as there were too many people trying to flee the East and move West.

In Lviv, Herasymova’s friends met her and drove her to the Ukrainian-Polish border. The queue to get to the other side was around 20 kilometers long, and people could only move during the day. Herasymova’s friends had to go back to the city, so the woman and her mom spent the night in a van of a stranger who agreed to let them in.

“In the morning, we saw that the line moved by less than a kilometer,” she recalled, “It was impossibly slow.”

Herasymova asked another man, a local volunteer, to help them cross into Poland. At first, he refused, but he later changed his mind.  “The man came back to pick us up and told us he’d try to drive against the flow to get us closer to the checkpoint,” Herasymova said, “He dropped us at another border, the one you cross on foot, and it was not crowded. I could not believe my eyes.”

The entire country has only two shelters that are wheelchair accessible.

“I didn’t have anyone in Poland or elsewhere, but my friends from Fight for Right told me that before I even leave Ukraine, there will already be somebody waiting for me in Poland,” the woman recalled, “And that’s how it was. They found volunteers who helped me in Poland, and later, they found people who helped me reach Denmark. That’s where I am right now.”

“I did not want to leave, and if I didn’t cross the border back then, I would have stayed,” she said.

Staying, however, would have been difficult even in Western Ukraine. The entire country has only two shelters that are wheelchair accessible: one in Lviv, and one in Dnipro. The shelters tend to be full due to high demand. Many disabled people have to be carried to get inside regular shelters, and then, they cannot leave or even use the bathroom as everything is built with able-bodied people in mind.

“THIS IS WAR. EVACUATIONS ARE UNPREDICTABLE.”

“We started preparing for war three weeks before the full-scale invasion happened,” Herasymova remembered, “Worrying news kept on coming, so we began collecting data on what people with disabilities should do in crises, how to help, how to avoid catastrophes, and what the law says on all of that. We learned that it’s bad, not just in Ukraine, but everywhere because there was little information on how to protect disabled people.”

The team decided to act even before the invasion actually happened. Before the war, Fight for Right was doing mostly advocacy work such as defending the rights of people with disabilities, pushing for a more accessible infrastructure and related legislation, and empowering disabled Ukrainians through education and networking. The invasion halted many of these activities.

“Even before the full-scale war, we launched a campaign on GoFundMe to raise money to provide psychological support for people with disabilities,” Herasymova explained, “We opened a hotline so people could reach a psychologist, and we got huge support of more than 6.5 thousand donations from all over the world.”

With more donations and support from international partners, Fight for Right started looking into how else they could help disabled Ukrainians.

“In the beginning of the war, we saw that there was nobody doing evacuations, which meant that people were not cared for by the state,” Herasymova sighed, “We had to fill that gap. Otherwise, people would die.”

With colleagues in different parts of Ukraine and the world, the organization started accepting evacuation requests. People could reach the team via phone or email, describe their situation and their needs, and then, either Fight for Right would set up an evacuation or send some other support. It was not always possible to set up rescues because some areas were inaccessible due to heavy fighting, and sometimes, people would change their minds and decide not to evacuate.

“People are scared and take a long time to decide,” Herasymova explained, “They worry about accessibility of their new home, and people with mental disabilities struggle with being in crowded shelters.”

“People are scared and take a long time to decide,” Herasymova explained, “They worry about accessibility of their new home, and people with mental disabilities struggle with being in crowded shelters.”

Evacuations are complicated to coordinate because you need to find a moment when it’s safe to leave and waiting for this window of opportunity can take weeks. There is also a need to find suitable transportation, which can be especially tricky when evacuating large groups. Herasymova and her team had to rescue from 10 to 30 people at once — anything larger would not have been feasible for the NGO. These large evacuations are exceptions: Fight for Right focuses on helping and accompanying individuals.

“It is very difficult because you’d need to have some state support like an international agreement on where to transport the evacuees and where to host them,” Herasymova said, “We can help evacuees find housing and get rehabilitation, but the responsibility of restarting their life in a new place is on them.”

Herasymova explained that most Ukrainians evacuated themselves, with little state intervention or help, especially in the beginning of the invasion. With time, evacuations became more organized, yet the priority has always been women with children. “There are some state-led evacuations of children from the institutions, but almost none for adults in mental institutions,” Herasymova continued, “People with disabilities are forgotten by the state and big international organizations, which should be paying attention to this problem and working on it.”

“We cannot evacuate everyone,” the activist said, “We had situations when we did not manage to evacuate people because we got too many requests at once from really hot spots. We also suffered when our volunteers got killed on the route to evacuate others.”

“This is war. Every evacuation is unpredictable,” she adds, “You cannot prepare for everything.  Right now, we can evacuate people from Donetsk region, and we are very happy for that.”

“WE SHOULD NOT REBUILD AS BEFORE. WE SHOULD REBUILD BETTER AND MORE INCLUSIVE”

Five months into the invasion, the team has improved its evacuation scheme. With more than forty regular volunteers as well as a network of those who can help from time to time, it has gotten easier to coordinate the work.  Now, the organization’s nearly 20 employees are getting back to other projects such as promoting accessibility and defending the rights of disabled people in Ukraine.

“We are members of working groups on Ukraine’s reconstruction, where we talk with the government about what we need,” Herasymova says, “People with disabilities have to speak for themselves because nobody else can decide what is best for us. When we hear about inclusion and participation, it is normally from people without disability who don’t include us and make decisions alone.”

When Herasymova and her colleagues participate in government meetings, they lobby for greater inclusion and accessibility. There is a great disparity when it comes to representation because people with disabilities tend to be overlooked by decision-makers. In Ukraine, more than 2.7 million people have a disability, but that rarely translates into political power.

“We have few people with disabilities who become decision makers and politicians because it is a long competition, and you are often not perceived seriously,” Herasymova explains, “There is a problem of institutions because it is easier to keep people with disabilities away so they would not have access to good education, and this excludes lots of people. A person with a disability has to work three times as hard to get an education and a job. Every life stage eliminates more and more people who could not fight until a certain objective.”

Herasymova hopes that after the war, there will be a push for a more inclusive Ukraine because before, the disability issue was nearly invisible.

“Now that we are talking about Ukraine’s reconstruction, it is very sad that disabilities are not present in all topics and subjects,” Herasymova said, “We should not rebuild what we had before, no! We have to rebuild a new Ukraine, which is friendly and accessible for all. If we do this from the start, we will not need to change things later on.”

“For example, if we build a town, it has to be accessible,” she said, “If there is an evacuation, we have to understand that there will be people with disabilities among the evacuees. We need to support people with disability who cannot leave the house. All of this has to be thought through. We need to involve people with disabilities on all stages and include communities from across Ukraine.”

For Herasymova, disability representation is not just about one problem. It is a complex issue that needs the state, civil society, and average Ukrainians to work together — and recognize the need to care for and empower all citizens.

“We have to talk about disabilities from a very young age,” Herasymova concluded, “And we have to move away from Soviet traditions of locking disabled people up. Ukraine is an EU member state now, so we should do better and build better, for all.”

Anna Romandash

Columnist

Anna Romandash is an award-winning journalist from Ukraine.

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