The wheel was invented a long time ago, but we’re way behind.
Hi, my name is Jane Velkovski. I’m 13 years old, a student in a public school and a passionate football fan. In addition to that, I’m a kid with a disability. My condition is known as SMA: spinal muscular atrophy, where the muscles are getting weak but the brain remains strong.
I love football. I'm a passionate football fan, and my passion has brought me so much joy and so many great experiences -- so far, more than I could have ever imagined. For example, I was offered to join a brilliant campaign by UEFA, that is the Union of European Football Associations, to raise awareness about equality and accesss issues. It meant, among other things, I got the honor of public recognition, public space and I got an opportunity to meet several famous players who are my heroes. I have also had the opportunity to speak at the General Assembly of the United Nations in New York as part of the World Children’s Day celebration in 2019.
These are just a few of the amazing moments I’ve been able to do. But the thing is, it’s not just a coincidence or simple luck that this happened to me. I was able to do all of this not because it was easy or simple to perform, but because some important things were given to me, like the support of my family, of course, inclusive education and the environment I was raised in -- but also very much because of my wheelchair. It literally has made all of this possible.
I’m independent with my chair. I’m free to go wherever I want to. I’m able to do things I couldn’t otherwise. My motorized wheelchair gives me three incredibly important things: freedom, independence and ability. Some people ask, “isn’t it just a wheelchair?” It seems like a small thing, no big deal. But it’s not. It’s a big deal to me. It's what made all of this possible.
But the question is: Do you think every kid like me has a wheelchair? No. I did a little research and I found out that today, over one billion people require assistive technology to achieve their full potential, but 90 percent do not have the access to the assistive technology that they need. That means only one in 10 people with disabilities, who are in need of assistive technology, have them. I’m that one in 10; I’m the lucky one. But still in my country, I’m not eligible to get a power chair until I’m in school, which means around six years old. So from two to six years old, how am I supposed to move myself around independently? I’m supposed to be pushed by another person when I want to get out of bed or go outside my home before the age of six? Do you think this is OK? No, not at all. So let me tell you how I got my chair.
I was around two when I started to wheel around. Every day, out with my neighbors, but first using my manual wheelchair pushed by my mom -- which, to be honest, kind of makes it hard to be just a kid hanging out with his friends when your mom was always right there. My parents had been looking for ways to get me a power wheelchair a long time before school, but it took them years to finally have it. When I was five years old, a year before I started primary school, I got this power chair. And it was not from the government or health insurance or even because my parents could afford it, but because it was a donation from another family overseas, from a child with SMA who had outgrown the chair in the United States. It was a gift in every sense. Their donation gave me the freedom I needed so, so much. Now my mom says I have a better social life than all her friends and herself.
When I was a very small kid, my parents, like others, were usually speaking on my behalf to the people in our surroundings. Even to the kid down there, answering questions about my chair, my legs, my condition -- all of that. They were saying, “Oh yeah, sure, he can play. His legs are a bit weak, but he can do the same things as you only in a different way.” I think that pretty much gave me an idea of myself and how to live my life and what to say to the world. That was the beginning of my wonderful social life. Later, in kindergarten, I was able to drive my power chair freely and enjoy life.
By the age of 10, I knew how to keep myself safe, so I just needed a bit of assistance for transfers and books. Otherwise, I was independent and so happy going everywhere with my friends. I have wonderful friends from my school and my neighborhood. I really enjoy spending time with them. But can you imagine how my childhood would look like without my power chair? I cannot. I’m forever grateful to the family that donated my power chair, but my freedom and independence and ability should not depend on luck or charity. No one’s should be. This assistive product needs to be available to everyone who needs it.
By the age of two, most children are able to walk on their own. Those children who have some sort of disability and can’t walk, they should be given an AT, an assistive technology, in order to move. If they have a proper wheelchair from an early age, they will have a great opportunity to discover the world around them.
Freedom of movement, no matter on legs or on wheels, is a human right, which means policymakers have to provide what children with disabilities need in order to move. It’s about being able to go to the park to play, go to school, go to work -- really, everything. This chair is my legs. This chair is my life.
The wheel was invented a long time ago. And thanks to that invention, I can move my stuff around. So this time, literally, the wheel doesn’t need to be reinvented. We just need policies to make sure that wheelchairs are available to everyone in need. But it’s not only just the wheelchair. We also need physical infrastructure. For example ramps, elevators, roads without obstacles, accessible transportation, school buses, so our environment becomes more accessible for all. We live in a society that’s not giving enough support to fulfill the potential of young people with disability, like me. We need to think about how to change that at a global level. If society removes the barriers that prevent me from doing everyday things, I can become a very productive person and give back to the society. I have so much to contribute of my intellect, my brain. I believe I can become a lawyer or an architect, whatever I want to. Also, I’m an excellent football coach and a strategist, so I have that to contribute, too. I have so many things I can do to help my community, my country and the world.
We may think of that as a mutual benefit. “How?” you may ask. Let me tell you how I see it. An able body doesn’t give you a direct pass to a happy life. A person able to walk still needs help with other things -- things that I can do well. So for example, for me, helping a friend on a math test is the same as him helping me with my backpack. I don’t see a difference. He’s struggling, I’m struggling, he’s good with his stronger hands, I’m good with my strong knowledge; we’re helping each other. That’s what friends do, and that’s what societies should do.
Once I was out with my friends and an old man approached me and started a very nice and polite conversation. By simply asking me, first, “What is your condition?” I felt deeply touched by the honesty and simplicity of his question. I was only 11 and felt so respected that he asked me and felt very comfortable to speak on my behalf and answer him. I explained to him why I can’t walk and what I need in order to function. Usually people only stare. Yeah, yeah, yeah, I know it's not a standard picture of a child. My wheelchair is very interesting. I was even cuter when I was small. But still, it’s not comfortable when people stare. It’s better not to stare, but to care. If you see a wheelchair user, rather than staring and wondering about them, look around and see if there’s something you can do to help. If there aren’t ramps, if doorways are too narrow, maybe that’s something you could work to get fixed in your building, in your city or in your country.
Each one of us can make a small change, but governments are supposed to make great changes. I, and people like me, need help from public policymakers to be able to live with freedom and independence. I wish that more people were like that old man, asking me, and children like me, what we need and listening to our answers.
I told you at the beginning, I love football. Just in case I wasn’t clear, I really love football, a lot. And to me, the whole world is like a giant football team. But I took part in the campaign #EqualGame not only because I love the game but because I strongly believe that everyone can play all around the globe: men, women, abled, disabled, young, old -- doesn’t matter. All of them were able to find their way to play the game that they love. All they needed was the barriers to be removed. So I see this world as a playground where people and government are like a team, and we need to make sure that everyone is able to play.
Thank you.
