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 Milesa Milinković, director of the Uhvati film (Eng. Catch the film) Film Festival, activist for human rights of persons with disabilities and disability theoretician.
It’s strange… It’s not like I hung outside a lot even before all of this. It happened just around the time the Festival and Caravan were over, more or less immediately after the holidays, we started the first phase of implementing seminars on rights of women with disabilities for representatives of institutions, and then continued with the cycle of writing project proposals for open calls. You could say I almost didn’t leave the house/office, and going to the shop or meeting Love does not count as hanging out outside. Still, I totally feel, as my late father would say, like I fell out of the right angle.
It seems like the very same time I had before, is not that time. Like there is more of it. Or there is less of me. Perhaps because things keep changing constantly:rules, time and spaces of freedom, possibilities.
I don’t even go grocery shopping. I belong to the risk group. Self-responsibly, I withdrew. Like the signs of the Roads Public Company on the motorway: – (I) drive carefully, somebody loves me. Sometimes I catch some sun during my walk around the block. In a mask, of course. Because when you’re short, if someone coughs or sneezes passing you, it goes straight to your face. And as I said, I drive carefully, because…
Somebody loves me. And that somebody is sleeping without me these days. And this is something that is most difficult for me personally. A couple of days ago I saw this funny post on Facebook: -Relationship status: 1. single; 2. in a relationship; 3. the state doesn’t let me. Love and I laughed about the third option. Laughed in agony.
… I started coloring fractals, the handbook with examples and color pencils have been waiting for me since the Festival. I downloaded a bunch of scientific texts about women with disabilities, science has been waiting for a long time. Also some high shelves, out of arm’s reach, have also been waiting for a long time for me to dust them. But I’m not scrubbing the house like crazy. I clean during the weekends, as always. I don’t touch the high shelves, because if I climb on a chair and, according to Murphy’s law, fall and get injured during the police curfew, I really wouldn’t like anyone to break the law by rushing over to help me.
I rarely color. Science waits in my computer.
Actually, my anti-stress mechanism told me at one moment that it’s better for me to keep my everyday life as similar as possible to what it was like before. To do the things that make me the happiest at that moment (without a guilty conscience). To do the things I would otherwise do this time of the year (project writing time is generally over, the current work-related tasks are preparations for the Festival). And it really helps me. This is why I read, cook, do housework, just as before, work a little bit on the Festival (generally speaking). I do a little bit of sewing (I’m just fixing holes and making alterations really). The only difference is that I have to keep dancing instead of my exercises and walking, so the little muscle mass I have left doesn’t atrophy completely.
In truth, regardless of efforts to live the same as before, my thoughts are not the same.
… I am thinking about the consequences of all this. Local and global.
Will the state withdraw funds for culture and reallocate them for other purposes linked directly to covid? Will we have funds to implement the 18th Festival just as we planned?
Will we lose human rights and freedoms? Will we become Gilead from the Handmaid’s Tale, using the fight against the virus as an argument?
Will we get smarter and start treating our planet and other human beings, with love? Will we realize that we are not superior just because we are human and that it is high time we stopped exploiting people, animals, plants?
Will we learn the lesson of responsibility, or will we be convinced someone very tough is looking after us?
How do other persons with disabilities cope? I think of some elderly ladies. I think of those who live alone, like me. I ask them if they have a support system. I can’t help thinking about different groups and how they are affected by all this.
My sister worries about her income, and I worry about her safety, because she works with people. Since all this started, I talk to my mom several times a day. She’s alone too. And I know she’s also worried about my sister and me, who are hundreds and thousands of kilometers away. I am only glad that she had a village she could withdrew to, where she keeps busy in the garden.
I keep repeating the question: – What can I do as an individual, so we don’t end up like (not even close to!) Gilead, where guards stand in front of houses, and children grow up with the conviction that these are their guardians from enemies, while they are really prison guards? I am thinking about the independence I suddenly lost. That nothing should be taken for granted. For example, it shouldn’t be taken for granted that you will always be able to sleep next to Love just because there is a mutual wish, that you will be able to do what you love, that you will see the people you love. That you will go to a shop on your own.
How easy it is to lose freedom; to give (sell) it away.
I have become aware of several things about myself:
- Some childhood wounds never heal. I am five. I am at the Banjica hospital, in bed with a plaster cast on my legs. My mom is here for a visit, but she looks at me through glass. They don’t let her come in. The bed has bars. The balcony door through which my mom is looking and waving at me also has bars. The first quarantine I remember.
- No matter how aware and wise I thought I was, I needed some time to realize how heartless it was to lock up people above 65 in their house, and how no one, not even I, spoke out against it. I remembered the poem First they came… attributed to pastor Martin Niemöller (1892–1984).
First they came for the Communists; And I did not speak out; Because I was not a Communist.Then they came for the Socialists; And I did not speak out; Because I was not a Socialist.Then they came for the trade unionists; And I did not speak out; Because I was not a trade unionist.Then they came for me; And there was no one left; To speak out for me.
More than ever I think about what I’m thankful for. I am thankful for my own space. For good immunity. I am thankful for everyone around me and my loved ones being healthy. I am thankful for stable sources of income, no matter their amount. For access to the Internet. I am thankful for friends who care and who are here, and who are there for me also under normal conditions. I am thankful for the possibility to call people who are dear to me. I am thankful that I have interests, a job, hobbies, and that I don’t have to force myself to do something to kill time (I have, otherwise, never been bored). That I enjoy my own company (If a person can’t be alone in silence, that is a sign of spiritual emptiness, a Native-American proverb says). I am thankful for the human being who loves me, cares for me, comes over for even only two minutes just to see me, a being valuable in their own right, who can be alone with themsleves, asking the same questions as me, thankful that during the hours together we can talk about our insights. I am thankful for our two furry friends, sidekicks, two small, natural serotonins. I am thankful for all insights.
Still, I can’t wait for all this to be over. To again have the choice of whether and when I can do what I want. To make big changes on election day. To never let anyone drive us inside our homes, to be wiser in the choices, decisions, we make. I can’t wait for the first night of freedom in which I will fall asleep hugging the universe.
(And then I’ll go get my hair cut ? ).