Pretending to be like everyone else

A human rights activist on the colonial legacy of the Soviet Union and why it is important to support people with disabilities

5 Грудня

For a long time my left hand was my enemy, my burden, my secret. Everytime I would see someone look at it, I would immediately feel paralyzed with fear. Fear that I would be exposed for who I really am — a “freak” with a left hand that had no fingers on it. For as long as I can remember myself I would always hide it. At first it would be with the help of long sleeved tops, then I got a prosthetic glove to cover the lack of my fingers.

From time to time, I’d ask my parents, “Why did this happen to me? What did the doctors say? What’s wrong with me?”

But they’d always say that there was no particular explanation for it. They always said that it was rare but that there were others like me — in Ukraine and beyond. But I never believed them. I always felt that it was extremely unfair that I was given this “inconvenience” in my life. When I’d feel particularly sorry for myself, I’d even tell myself that because I was so unlucky with my hand I would be lucky with everything else in life. It would bring me some reassurance and relief.

From kindergarten to school, kids would always ask me questions. Some were curious, some were disgusted, some wanted nothing to do with me. There were those, of course, who were kind to me. I still remember in third grade, when I still didn’t have a prosthetic hand to disguise my limb difference, there was a boy in class that really liked me and would always sit next to me in class. I remember thinking back to that time as a teenager and not understanding how anyone could have liked me — I didn’t have a hand after all, I wasn’t normal. I was convinced that I would be unhappy for the rest of my life and would never find a partner that would want to be with me. Or good friends for that matter.

At the age of 13, I decided that I wanted a prosthetic hand to help me pretend to be like everyone else.

I was lucky and privileged enough that my parents had the means to take me to the UK to get me one. It was virtually impossible to get a prosthesis in Ukraine and thousands of others had to make do with what they had access to, which most often was nothing. Since then I’ve had one done almost every other year.

But that didn’t save me from strange reactions from people I’d meet. Once, after seeing my prosthetic hand a guy I liked in Ukraine told me, “You must be joking right? Show me your hand again. Don’t play tricks with me. I don’t believe it.” But the thing is that I wasn’t joking.

My prosthetic hand wasn’t “a trick”, no matter how much I wanted it to be one. I remember feeling extremely ashamed and hurt. But instead of voicing how I felt, I just responded, “No, it’s real.” I can recount countless incidents, like that one, that made me feel deeply isolated and alone. If this is how I — someone who was easily able to hide her disability — felt at many points in my life, how did others — who couldn’t — feel?

I didn’t know back then that there were others like me.

I wasn’t aware of the fact that people with disabilities in Ukraine were made to be invisible.

This was a harsh legacy that we inherited from the Soviet Union. In a land of allegedly free and equal opportunities, authorities propagated the false belief that there were simply no people with disabilities there. They erased them. That, of course, meant that there was no support for people like me in the USSR. Thousands were ignored and made to become invisible. This sadly continued into the years of once again independent Ukraine.

I still remember breaking down in tears one night in my 20s when I came across a video of a girl on youtube with exactly the same hand as mine playing a piano. Just like me, it was her left hand, and just like me, she had no fingers on it. Before that, I had never seen anyone like me before. Tears were rolling down my cheeks and onto my pillow faster than I could process what I was experiencing. Relief? I wasn’t alone. Sadness? How tough must her life have been. Hope? Her hand couldn’t stop her from beautifully playing the piano. 

As life went on and I moved to the UK, I grew more comfortable with my differences. I still hid it: at my first job, at my second job, on many dates and nights out and on social media. In Ukraine, I never saw people in the public sphere with limb differences or other disabilities. And so would hide my hand even more when I’d come home. To be honest, it wasn’t much better elsewhere.

But then Russia’s full-scale invasion of Ukraine happened. So many soldiers, civilian men, women, children — injured by bombs, mines and bullets. I started seeing so many of these brave and courageous people who survived the unimaginable but lost limbs or other parts of their bodies as a result. Their stories were deeply tragic, but it made me so happy to see them being celebrated by everyone in our country — their resilience, their courage, their hope. It felt like people with limb differences were finally being seen. “Finally, my country is moving forward in how we treat those that had disabilities,” I thought to myself when I saw a beautiful and tender photoshoot of Ukrainian veterans with prosthetics on Instagram.

“Maybe, we’ll all be more accepted now.” 

I would never understand what it must have felt like to have had something and then lost it in such a traumatic way. I would never understand the feeling of injustice that so many of these people felt. If Russia didn’t invade Ukraine and didn’t send thousands of missiles onto our cities, this wouldn’t have happened. People wouldn’t have had to go fight on the frontlines or live in constant fear of missile attacks. But I could, to a degree, understand what it must have felt like to have so many people ask questions and stare at you. To feel isolated and alone.

There’s no doubt that the war forced us to look at ourselves as a society. To become more open and accepting to people’s different experiences. Yes, it has undoubtedly drawn our attention to the conditions of life for people with disabilities in Ukraine and also the attitudes in society towards them on a scale like never before. But to truly make life better for all people with disabilities in our country, we have to be curious about the diversity of different experiences — both during and before war. Wars tend to exacerbate existing conditions, and this is no exception.

What support did people with disabilities get before the war? How readily available were prosthetics? Has that changed? How much of the state budget was spent on making cities more accessible? What’s the situation now? How have people’s attitudes towards people with disabilities changed? And what has been done to change those attitudes from Soviet times?

We cannot wait for more people to be injured in this war by Russia to catch our attention to look at the conditions of thousands of people with disabilities in Ukraine. We must start making life more safe and accessible for everyone. It matters for us all. And if we truly want to shake off the horrid colonial Soviet legacy, we must start seeing the whole diversity of people’s experiences.

Valeriia Voshchevska, a human rights activist, international expert on digital activism and social media strategies, director of communications at a British-Ukrainian initiative, Ukraine Solidarity Project, co-host of the Ukrainian Spaces podcast.

Місія The Ukrainians — уможливлення позитивних соціальних змін в Україні
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