As a Disabled Ukrainian Refugee, Fleeing Was Scary, Humiliating


  • Oleksandr Nikulin is a 30-year-old chemist from Kyiv, as well as a volunteer for disability rights.
  • He fled Ukraine with his partner and cat when Russia invaded. He’s now helping other refugees.
  • This is his story, as told to writer Ryan Prior.

This as-told-to essay is based on a conversation with Oleksandr Nikulin, a chemist from Kyiv who fled his home when Russia invaded Ukraine. It has been edited for length and clarity.

I knew I had to flee when there were explosions and gunfire outside the hospital where I receive life-sustaining treatments.

I’m a 30-year-old chemist from Kyiv, where I work in molecular drug design, aiding cutting-edge research to discover drugs to fight COVID-19. I also volunteer for Fight for Right, a human rights and disability rights organization.

The crowded railway station in Kyiv as Oleksandr Nikulin tried to leave.

The railway station in Kyiv as Oleksandr Nikulin tried to leave.

Courtesy of Oleksandr Nikulin


I live with HIV, just like my partner. Every day, I take an antiretroviral pill containing three drugs that suppress the virus. My CD4 cell count — a measure of the strength of my immune system, and whether it is faltering in the face of HIV — is around 200, and my condition has advanced to Stage 4. It’s important to take my pills every day because my health is so poor. The doctors have had to change my treatment two or three times in the past year. 

Five years ago, I went to the hospital on the verge of death. I don’t want to go back like that.

We live on the ninth floor of our apartment building, and when the air raid sirens went off, it was incredibly difficult to make it downstairs to the first floor with our cat and our bedding. We went to the emergency shelter four times in one night. I was afraid to take a shower — where I might be naked, vulnerable, and too slow to escape when the next attack came. I was afraid to go to sleep. It’s not normal when you can only sleep two hours per day.

How Oleksandr Nikulin and others slept on the first floor of a building during air-raid sirens. They're bundled on the floor in the dark.

How Oleksandr Nikulin and others slept on the first floor of a building during air-raid sirens.

Courtesy of Oleksandr Nikulin


We went from COVID-19 to this invasion. It’s like in the Bible, with the plagues in Egypt. First disease, now war. What will happen next?

In this state of war, you start to think differently. You understand that HIV therapy is your life, and you understand just how badly you need access to this therapy.

So, we hailed a taxi at the maximum price to a packed railway station in Kyiv. We boarded a train bound westward to the city of Uzhhorod, on Ukraine’s border with Slovakia. There, things grew more complicated. 

After waiting seven hours, a soldier turned me away at the border crossing because I was ‘not disabled enough’

Ukraine now is a military state, and all power is in the military. Every man aged 18 to 60 is required to serve, with only a couple exceptions. Whether you can leave is at the border guard’s discretion — they’re looking for a person with a disability and deciding individually about each person.

Oleksandr Nikulin and his partner in front of a street sign after crossing the border in Slovakia.

Oleksandr Nikulin and his partner after crossing the border in Slovakia.

Courtesy of Oleksandr Nikulin


But with our HIV status, we had every reason, by law, to cross. It was really humiliating. A few days later, we tried joining an Amnesty International convoy and again were stopped by the military. We needed to have fresh documents showing our medical condition.

In Uzhhorod, I was at the military medical office from 8 a.m. to 8 p.m. every day, waiting with others who have different diseases. I wasted three days waiting for paperwork. Some people wasted a week. 

A large crowd at the border queue at Uzhhorod.

The border queue at Uzhhorod.

Courtesy of Oleksandr Nikulin


I saw people with Type 1


diabetes

eating and taking insulin at specific times to make it through the day. It was really awful. The first half of the day, you’re standing on the street and you wait, and wait, and wait. When they call more people into the office, they only have about a dozen seats for more than a hundred people.

Once you receive the decision from a doctor, you get a document from a lawyer saying you’re excluded from the army and you can cross the border.

Now that I’ve left Ukraine, I’m helping other people with disabilities cross the border

We finally crossed on March 17. From the border, our train journey took us through Kosice and Bratislava in Slovakia, and then northward through Prague and Berlin. Finally, we came to stay with friends in a town on the German-Polish border. 

A large crowd at the border queue at Uzhhorod.

The border queue at Uzhhorod.

Courtesy of Oleksandr Nikulin


I don’t want to abuse my welcome here. I’m hoping to go next to Denmark and keep coordinating the effort with Fight for Right to rescue other Ukrainians with disabilities still in harm’s way.

Our organization is now evacuating people with an ambulance. We also have our own bus, which we’re using for people who can’t walk. We’re helping people with humanitarian needs, such as finding accommodation either in Ukraine or abroad. It’s huge, tough work. It’s a different process each time for each person, and there are new needs posted every day on Facebook.

Oleksandr Nikulin and his partner with a pride flag at a friend's home.

Oleksandr Nikulin and his partner at a friend’s home.

Courtesy of Oleksandr Nikulin


There are 2.6 million Ukrainians with disabilities, and we’re in dire need for more assistance from the international community to help transport them to safety. Transporting refugees with disabilities often requires a lot of special tools, knowledgeable workers, and accessible accommodations, which can be expensive.  Many of the organizations catering to refugees are not equipped to deal with refugees with disabilities.

I believe we will win, and I’m hoping to return to Ukraine soon. As soon as I get back, I want to buy a perepichka. It’s a fried sausage with dough, and it’s the symbol of Kyiv.



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