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 Milica Janković, author of the blog Balkanski mali dnevnik slepih i slabovidih (Eng. Little Balkans Diary of Persons with Visual Impairments). Milica has been writing from an early age and is dedicated to advocating for social justice and changing perceptions about persons with disabilities.
During the pandemic that has shaken the entire world, I am often thinking about how people are coping with the new situation. Among friends I am often in the role of Dr. Phil and this has not changed even now. I try to make these days a bit easier, more interesting, simpler, for others and for myself… I send funny clips to my friends, and we talk, sometimes for hours.
I try to do things I didn’t have time for before. I am learning to cook and bake. I read books, I write something here and there. I’ve been in isolation since March 12 and so far, I’ve completed two online courses and signed up for a third one. I am preparing some tutorials for different applications. I play the Puzzle (game based on the television quiz show) and quizzes. I try to follow as many online tours as I can organized by museums of the world and see online plays that theaters made available online.
I keep reminding myself that though I am immunocompromised, I am not in the worst position. This isolation is certainly something that I was bound to face at least once in my life. I’ve known this for a long time. I am, based on my health, at risk, I am completely isolated from the entire world, even household members, but I was not left without a job, because I didn’t have one. It’s also very important that I didn’t lose anyone I know or love to covid. – A lot of people weren’t so lucky! – I often tell myself. Entire economies of big countries are falling apart. Companies are shutting down. People are literally losing their basic life income. People are also dying all over the world. They struggle and they don’t make it. They are lost to their loved ones. These are terrible things. A lot of companies in the USA, where people from these regions were working, simply closed overnight. People were left without their jobs, with no security, even without basic life necessities. It also sometimes happens that those who were in hospital are sent home and household members try to look after them as best as they can, but that is not enough. I they could, if they had the conditions and knowledge, they wouldn’t even need hospitals.
A change in my daily routine is that I don’t travel, I had to cancel some things, miss some parties and not get to meet my friends, until further notice. However, my whole world hasn’t changed compared to the people mentioned earlier. We are all here, we all have a roof over our heads, flour, oil, paper, bread and salami. We are alive and we are getting on – and supporting each other. We are functioning. That’s the most important thing. I will be brutally honest and say that for most persons with disabilities nothing has drastically changed. It’s well known that persons with disabilities are not sufficiently physically active, in reality, at least seventy percent of people are not physically active or go outside as they don’t have conditions for this, training, lifts, or are simply not motivated or encouraged. When it comes to jobs, I think that ninety percent of persons with disabilities are not employed, so there is no drastic financial decrease. I often say we are all equal in this, but this may not be the truth. In these circumstances it’s even easier for persons with disabilities as they don’t have that much to lose compared to others.
My greatest challenge currently is the question: – What useful things can I do? I try to answer this question every day and do something new for the community, friends, and myself. I have been writing and will continue to write. That’s somehow what I’m best at. I wish I could volunteer, I am currently trying to find something online that I could do as volunteer work.
My greatest support are my friends, who I talk to. These conversations fill me with positive energy. Also, what supports me is the knowledge that I’ve survived in quarantine for almost a month and that this will be over! Just thinking about a nice little beach, just waiting me to get there if I manage to survive, makes me push on. Literally.
A good thing in what is happening is that museums and theatres have enriched their online programs. At the same time, I think we are slowly becoming more aware of each other. At least I think this is the case! Sometimes the days are too long, sometimes too short. It depends on whether I got out of bed on the wrong side or not. I think everybody can be in a bad mood sometimes, but this passes.
When all this is over, the first thing I am going to do is to give all the people I love and respect a big, strong hug. I really miss simple physical contact like hugging. I plan to host a survival party and get all my friends together so that we can dance, sing, laugh and hug while we listen to some loud and hard folk music! After that I will see a friend who promised me even before all of this that he will throw a party for me. He makes the best house parties and I can’t wait for that weekend, so I can give those people there a big hug too. When I recover from those parties, I will start planning a summer vacation. I would like to visit Ohrid Lake again and on a boat trip to St.Naum spread my arms and yell: – It’s over, darn it! It’s over! Everything passes, and this will also slowly become a mere shadow of the past. A collection of positive and negative memories.
Translated by: Marina Ileš