The piercing looks, the question marks on their flat faces, and turning heads that almost scratch on the inside of your soul. Suddenly, something that has been a normality to you, seems to be different and unusual once the public eye looks at one of your loved ones. But what is considered unusual and what is normal? Do such definitions even exist? Those are questions that have been hunting me while getting older and trying to understand how billions of people should build one unity and cooperate on this huge project called ‘life’.
A Personal Experience
Growing up with a brother that suffers from multiple disabilities has given me valuable insights into the everyday life of people with special needs. As a child, I never questioned why he was depending on his wheelchair, why he did not talk or could not form his own words. The sparkles in his eyes, when he was listening to his favorite music or the laughs we had, watching our favorite tv show, are the memories that are engraved in my mind. I knew that he was special since he is my big brother, but I never thought of him being different compared to someone’s brother next door. His time and his activities are dependent on other people. Human beings that are close to him, but also humans that he has never met before, that he needs to rely on and have faith in. Someone that needs to wake him up in the morning, someone that drives him to school, or someone that is responsible for his medications.
People like him face barriers in life, but those barriers do not necessarily resemble stop signs. Instead, they can also be turned into bridges. One of these bridges in our family is called ‘music’. Going to concerts, being a part of the ocean of lights, and sensing the taste of freedom in the air. Those are experiences that have always brought joy and happiness to my brothers’ life. In the ocean, he is just like everyone else. But that certain feeling of freedom was taken from him and many others by the pandemic.
A time would come that does not even feel like the concept of time anymore. Just moments that are squished together in a bowl but nothing new will be added. The same feeling of isolation, the same feeling of boredom, and the same feeling of being helpless. Something that many experienced, including my brother. Being a part of the people that are at high risk during a global pandemic, forced him to stay home for 16 months. Concerts were canceled, his work got canceled, and most importantly, his therapy sessions, since they require physical contact and cannot be done remotely. Since he is dependent on other people and especially when it comes to free-time activities, he did not get to meet up with his friends.
The Pandemic as a new Barrier
During the highs of the pandemic, many people with disabilities faced struggles that might not even be that obvious. Imagine a simple trip to the grocery store. Normally, a simple procedure, but also necessary to create the basis for our everyday life. The first barrier would be the bus. Someone that sits in a wheelchair may not be able to push themselves up the steep ramp and requires someone to assist them. The bus driver is not required to show any kind of assistance due to social distancing. Even if you do not have to take the bus, the next barrier might be waiting for you in the grocery store. Reaching the groceries on the top shelf or moving heavy products, are also actions that require assistance. People with disabilities face additional limitations in times of crisis and it is our responsibility to ensure the existence of inclusiveness and accessible services without the violation of human rights.
Back to normal?
After 16 months, it was finally time for my brother to return to his workplace. Seeing his face light up again just because he has a different place to go to every day and different people that he can spend the day with. After it seemed like we had finally reached the end of the tunnel, new challenges were thrown in our direction. New staff that was not familiar with the medical procedures, not enough people that can attend work in person, and the constant fear of getting sick has come back.
It has been a rollercoaster ride, but the light at the end of the tunnel brings hope into the world. My brother has also been holding on to that thought and tries to not let anyone get in the way of getting a piece of his life back. Are there even people that want to get in the way of that, you might wonder? Isn’t it the pandemic that has put all of our lives on hold? Unfortunately, there are those kinds of people. While attending an open-air concert he had to deal with disrespectful comments. People blocking his view and saying that he doesn't understand anything anyway.
Those are words that break your heart. Even if these cases are thankfully not the norm, it is unbelievable to me how some people can be so cold-hearted. Ignorance is not a solution. Be mindful of the people around you and let’s walk out of the end of the tunnel together. Not on your own, not with someone else, but with everyone and linked arms.
