We asked women with disabilities what their daily life looks like during the pandemic. What they go through from morning to evening, what activities keep them busy, what they talk about with themselves or other members of the household, what changed in their daily routine, what their greatest obstacles under the new circumstances are and how they overcome them, what aspects of their character help them or make it more difficult to cope with the situation, what their sources of support are, if there is a good side to what is going on, what new things they have discovered about themselves during the state of emergency, how isolation affects their relations with others, what makes them angry, are their days in isolation too long or too short, what is the first thing they will do when this is over…? This is how the instant column Quarantine Notes on the Disability Portal came to be. Below are the notes of Svetlana Janković Beljanski, activist for rights of persons with disabilities and former Assistant Mayor for Social Issues of the City of Valjevo. Svetlana is involved in acting and is the initiator of the Drama Creativity of Persons with Disabilities Festival, as a result of an acting club that represents an inclusive theater in every sense of the term.
Mornings are standard, since I retired, I wake up a little earlier than before, around nine, and it’s like that now too. The person who gets up first boils the water for coffee. Mikica and I have coffee, Marija drinks Nesquik. After that we have breakfast, then do the dishes. If Marija is visiting her grandparents I prepare what she needs to take them, and I put her mask on. In the meantime, I hang out clothes to dry, tidy up and I go grocery shopping every second or third day, also to the pharmacy, maybe visit the bank. To my luck, everything is near the apartment, in the city center. Of course, I regularly wear a mask and gloves, when I return to the apartment I disinfect my shoes and bag with alcohol, throw away the gloves and plastic bags I brought, wash my hands and the cotton face mask (first with hot water and detergent, than a high temperature cycle in the machine). Based on my instructions, my mother made several masks, so I have them for this procedure.
Then it’s already lunch time. Besides a cooked main meal, we always have soup or stew for lunch, this has become a routine in my cooking, but when it comes to the main meal I am in trouble, because Marija mainly only eats meals with chicken or minced meat. Then we have this cooked meal for two days. I usually buy my vegetables at the market, so I am not used to buying vegetables in a supermarket. Several days ago, my mother sent me fresh cabbage my sister had bought somewhere, so I cooked it with chopped beef. After lunch it’s time to do the dishes against, and then I usually do some housework, vacuuming, cleaning floors, tidying the closets. There is always work like that around the house. I clean the bathroom daily, that is, I disinfect it with alcohol.
These days I always makes us tea, one in the morning and one in the afternoon. I used to drink tea or coffee with lemonade in the evenings, with two neighbors from the building. Now we only talk on the phone, or if someone really needs something, we see each other at the front door and just hand over the bags. We miss being together, especially me, because this was an opportunity to sit and relax, listening to jokes and talking with the two of them.
At seven in the evening, I usually watch Slagalica (Eng. Puzzle – Serbian quiz show). I put the ironing board in front of the tv, and I am ironing the laundry while watching and listening to something that I am interested in. They criticized me for a while for ironing everything, so I just folded some of the things, but I am back to old-school ironing, and so I iron everything except maybe socks. That is, as my grandmother and mother used to say, the most efficient way of killing viruses and bacteria.
When it’s dinner time, I usually make gibanica (layered pastry with cheese), burek, projarica (corn flower dish), mini pizzas or bake frozen pastry. This is good, because we have the leftovers for breakfast the next day and I can also make them for my parents.
Sometimes Marija and Mikica eat chocolate-hazelnut wheat flakes, and that’s an opportunity for me to skip dinner. Since I turn the washing machine on when I can use the cheaper electricity rate, I put the dirty laundry in the machine and turn it on before taking a shower and going to bed. Besides all this, I work with Marija, when I need to show her something, especially now when there are no regular classes.
If I have the time, I read a book or do something creative, this maybe decoupage (I decorate flower pots, glasses, jars), or crosswords, I do puzzles or play other games on Facebook. If we had more room in the apartments and a sewing machine, I would sew masks, but this is, unfortunately, impossible. A few days ago, we put together a glass cupboard we got just before the announcement of the state of emergency. We struggled, but we did it. We also painted the wall and rearranged the furniture in the living room. A little change is always good.
When I go through the news on the internet, to stay informed, I get worried, and catch myself thinking: – Did I by chance get infected somewhere? I have no official symptoms, but Mikica and I have difficulties breathing, because we had pneumonia, and because of the spasm and involuntary movements I sometimes feel pain in my chest, my sinuses are problematic nowadays, while Mikica sometimes coughs and sneezes. We make sure that we measure our temperature in these moments. When I see the temperature is 36.4, I calm down a bit.
It’s difficult that for some tasks, those that require getting down on one’s knees, squatting or pushing, I can’t call anyone to help, so I have to do as much as I can by myself. I see that at these difficult times, an even greater marginalization of persons with disabilities is starting to surface, but I don’t think about this too much, it’s not the right moment now. It’s important to hold on, to survive, remain yourself.
I communicate with people from my acting group, we send each other messages through Viber. I occasionally talk to people from neighboring counties, cousins and friends. Of course, I talk to my sister and mother daily. I often tell myself how lucky I am to have a sister, so we can always lean on and support each other. My niece sends me a good night message in the evening, and it fills my heart with joy.
I remembered how, during the flood, I was in position of Assistant Mayor, and called persons with disabilities in endangered zones and arranged help if they needed anything. Some people remembered that now and called me. But I am aware that the current situation is completely different. It is in these times that true friends, goodness, humaneness are revealed… The family is in primary place, which I always talked about, it’s where everything starts and ends.
All three of us sometimes feel depressed, but each of us reacts in a different way, so we are each other’s support. Marija and I sometimes start crying, but we quickly snap out of it, Mikica reacts rebelliously, so we need to calm him down, sometimes I even have to yell to make him stop. It’s even harder on him and he is often overcome with dark thoughts, because he spends most day lying in front of the television, so he hears and sees a lot of things. It was good for him that he assembled the glass cupboard and painted part of the living room walls, because he feels better if he’s engaged somehow. My Marija often jokes around which also lightens my mood. Life is most valuable because of her. Otherwise, I am not a panicky person, when I’m in trouble I try to solve the problem or adjust to the situation, and I react when it’s all over. That’s how it is this time too, at least for now.
As usual, what makes me angry is that I have to do everything, no matter how exhausted I am, because I have only my daughter to help me.
Thinking about the situation in my city also makes me angry, because I remember where we’ve come to from the Valjevo that was once the industrial heart of Yugoslavia and a city to be proud of. I am irritated how the situation is politicized in Serbia, and it seems all over the world, but I try not to react to this or avoid this type of information. I feel sad and disappointed when I hear people dear to me got infected. I often think about my friends who are medical professionals, about doctors and nurses, I wonder if they are all right, how they are coping with the burden and responsibility at work.
When all this is over, I will most certainly dedicate time to myself. I will go to treatments that I kept postponing. We will go together to Novi Sad for a longer time if the conditions allow it. I will make sure I walk more and stay in nature. All in all, I lead a common life, it’s just that there is more worrying about myself and my loved ones and there is more tension around.
Translated by: Marina Ileš
Svetlana Janković Beljanski: Living by Your Own Decisions
