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 Marija Vrebalov Djordjevic, Feng Shui interior designer and activist for rights of persons with disabilities. Marija is a member of the Assembly of the City of Novi Sad (on the list of the Democratic Party as a non-party person), member of the Council for Persons with Disabilities and former deputy president of the Assembly of the City of Novi Sad (2000-2012). An expert in universal design and accessible communication.
I taught myself a long time ago not to think thoughts that are not constructive, productive, which are damaging, that make my heartrate go up and leave me short of breath. I thought I had taught myself well, but recently I realized I didn’t. Everything went down into the deepest ocean of the unknown, the terrible, when, because of the news and information about covid, I realized my life would be endangered if they introduced the police curfew. Life within four walls can be organized well if we have all the necessary logistics, helpers, sufficient funds and a life that is not too challenging in itself. Who will help me and how will I manage to do basic physiological needs, going to the toiled, getting dressed, getting up… All the way to what am I going to eat, is there enough Prolom mineral water, gloves, disinfectants for the person coming, who will help me in the evenings if the police curfew starts earlier in the afternoon. My thoughts were spiraling, upsetting me, I couldn’t breathe, I kept thinking about all the things I am afraid of and all that I am deprived of in this already restrictive bodily state. Enough. Enough! I managed to stop myself from thinking these worthless, horrible thoughts, blocking and paralyzing me. I gave myself the task to create a realistic plan for the morning in new circumstances.
Life is to be lived. Even in unimaginably complicated circumstances. To find something for ourselves, to choose in situations we didn’t choose. There is a choice to make, always and in everything, in this case in our new reality, with the pandemic and covid and given restrictions, we can choose reason, peace, quietness, mindfulness, slowness. We can, if we want to. And we can also choose to be angry, upset, to be afraid, to hate. I chose the first. Dad and I are the most at risk in the family. We stopped getting together as a family ever since the beginning of March. We don’t want to take any chances. We’ve all had our times of hardship, different forms of separation, loneliness, dad had the variola epidemic, I had typhoid fever and isolation as a girl, then almost two years of separation from my family, spent at different hospitals after a car accident, in 1998 I had severe pneumonia with pleural empyema and effusion, which is why I was on a ventilator for three months and also in moderate isolation, and the bombardment, during which I was pregnant with complications. I was never stayed angry for a long time because of circumstances out of my control. I always quickly understood the given circumstances, from them I learnt what life brought me, learnt to take care of myself, find happiness in the very moment I was in, not to remember bad experiences filling me with indignation, but accept them as a wealth, a storehouse of knowledge, enabling me now to enjoy the little bright parts of the day. And even when I’m not all right, I know it will pass if I don’t give myself over to self-pity, anger or criticism.
My live circumstances changed exactly one year ago. Into my single life, my inner silence, peace, general love, entered concrete love. A relationship I was dreaming about almost my whole life. I never thought I would fall in love ever again, nor that I would wish to wake up in the morning even before falling asleep, just so we can be together again, to laugh, to talk, to share the tiniest feelings and wishes. But that’s just what happened. Love. Dedication to partnership. Stability. Trust. Humor. Happiness. Fluttering. Tenderness. Passion. All in one person. I let myself go. I gave myself over to life. I realized that things happen just when I am ready for them. Even now, though it’s very difficult, individually and globally, though restrictions in daily activities are huge, I know that the whole world, from my first neighbors to the next city, country, continent, the entire world is going through an enormous transformation and I gave myself over to it. I am enjoying the fact that I am healthy, that I am with my husband, that I have a good assistant, that my family and friends are healthy.
Writing, creativity, very specific isolation due to disability, winter isolation lasting two to three months each year for almost twenty years now, introversion and creation, have represented my daily life for many years. Political engagement, activism in the field of disability and accessibility, writing a book and editing diary entries, all of that shaped me. A lot of love dedicated to, through presenting my difficult personal experiences, making heavy and dark moments brighter, clearer and lighter for those who are going through something similar but don’t have anyone to share with. Some things have intensified, some have become quiet, waiting for some other times, during these times I do everything I can, everything that is my personal responsibility, I don’t listen to the news, because there are a lot of upsetting things that are out of my control, I spend just several minutes daily on social networks, I read posts selectively, we don’t let anything into our personal life that is not part of us, we take care of each other, we work from home and are grateful for the extra time we have just for us.
And I realized that the world isn’t here to make me happy, nor are politicians, friends or anyone else, not even my family. I realized they are all here for me to wake up, understand who I am, to know my values and increase them through my dedicated daily routine in prayer, meditation, exercise, discipline which I value greatly otherwise and I don’t find it difficult to keep in the new circumstances, because I live that way otherwise. I don’t deal too much with what I am not allowed to do, nor do I analyze other people’s activities, fears, angers, but I understand the times we are living in, in which I understand the virus itself is not lethal, but rather the way we treat it, the way we understand our life, health, hygiene, bodily and spiritual. What is lethal is that we don’t care about each other. What is lethal is that we don’t do everything in our power for ourselves, because that’s how we do it when other people are at stake. What is lethal is that we hate the police curfew, but we make ten contacts before it starts, exposing both ourselves and others to danger. What is lethal is that we don’t understand that the most important thing for us all is to stay away, quiet, to silence all the noise of the world in our head, it is lethal to think it will not get to us, it is lethal for all if we don’t realize each of us individually can save the world. With our discipline. Reason. Love. Peace and acceptance. It seems difficult, but it isn’t difficult at all.
Translated by: Marina Ileš