I have Progressive Muscular Dystrophy Landouzi – Dejerine, aka FSHD. This is a genetic disorder. I was diagnosed at thirteen years old, at sixteen my shoulder blade began to stick out, and I got into a wheelchair at twenty-nine. The disease is rare, poorly understood: it is described, but it is not investigated in terms of treatment – except for vitamins and other healthy lifestyle, it is impossible to influence the condition. People with this diagnosis have very different prognosis. I know a woman who is much older than me, and she still walks with a stick – and I know a girl who, at the age of sixteen, moves in a wheelchair. I think positively and hope that everything remains the same as it is now. But in the end, I cannot be responsible for my own muscle degeneration.
I’m a contemporary artist who hasn’t been able to integrate herself into the community. I know guys and girls who are engaged in contemporary art – but they can run and beat boards, but I cannot, so I do other things, painting for example. But one door closes – another opens. I have such a character – I cannot sit still, I enjoy the action. When I needed to be socially realized, naturally, in the 21st century, I began to do this through social networks. I entered cyber activism along with feminism: you cannot stand aside when you see what is happening in the country. In my own way, maybe grotesque, I try to convey to the femcommunity that we need to take a broader view of things and not forget about our sisters with disabilities.
They often tell me about my disability “Alena is a project”, and although they don’t call me a character in person, they say, “What a story!” I answer: my dears, this is not history – this is life. I’m thirty-one years old, I went through a war with myself, and I basically don’t care what to post if I think it needs to be done. This is such a field study. I love art, I love people, I am interested in how they react to different actions.
The change in mobility was slow and painful. When I was twenty-two, I stopped going to the institute by subway, at twenty-five I left graduate school, moved to St. Petersburg for a short time, began to work and study art. Together with the individual rehabilitation program and the opportunity to order social taxis, I got mechanical wheelchairs, but I looked askance at them: then I could still walk a kilometer, holding my hand, although it was very painful. The realization that it was time to change to a wheelchair came gradually – at about the same time I visited Oslo and saw how people can move in a wheelchair, saw something outside my own four walls and yard. Two years ago, I suddenly felt worse, panic attacks began, and I realized that it was time. Perhaps it was necessary to do this even earlier, so as not to revel in wild pain in the joints. The upright position of the body is not worth the pain.
Now every time I go out on the street like a flash mob – everyone pays attention. But this is better than enduring wild pain. I joke among my comrades: “Of course, I am more privileged: no one will stare at my unshaven legs – everyone will stare at my stroller!” It is very difficult, but I see a positive side here as well. I am grounded in the history of sovrisk and I understand that this is also an art project: to travel in a wheelchair to an inaccessible city is not actionism? And if someone is staring, I say, “Don’t stare.” If someone wants to help without asking, I say: “Thank you, no need, I didn’t ask.” I am a very tough woman, it is not a problem for me to send helpers off. On the one hand, I’m not going to muddy the waters and come up with complex conceptual schemes, but on the other hand, everyone says: “Alyon, you are far from simple” (my nickname on instagram is “I’m a simple woman”). Well, as you want, that’s how you see me.
I have a conventional beauty – thanks to my mother, so to speak. Whatever I do, even put on a bag, it’s hard to ruin it. It is a privilege that helps you relax. I don’t care much about what my body looks like: I’m a feminist and it’s just outside the scope of my worldview. But I have to negotiate with the body, because every day I am in pain. In Russia, there are few options for pain relief. I have a palliative doctor who offers synthetic opioid substitutes – roughly something to get hooked on. That’s why I call him Doctor House. But after I had tuberculosis at the age of eighteen, when I had to eat handfuls of pills, I try not to stuff myself with drugs, if this can be avoided – and even more so with opioids. Perhaps one day I will agree to such a scheme: it takes a lot of resources to fight pain. On a day when everything falls off from the back of the head to the toes, it is very difficult to serve myself, and I would like to fully realize myself, and not just watch the sunset.
I am a very conscious woman: I read materials on the topic, watch videos on YouTube, try to reflect and periodically go to a psychologist. He helped me, for example, to calmly part with a guy. We met for three years, but it seemed to me that I was physically dependent on his help – with the therapist we worked to ensure that I did not feel guilty. It is difficult to take such a step when you know that there is a person nearby who will always be there. In general, psychotherapy has nothing to do with disability, it helps everyone. You need to believe in something in this life.
Before I could put on makeup to go out and make an impression, after all, makeup is a kind of adaptive behavior. Now I just make the face look brighter and more symmetrical. Everything is very easy: I paint eyebrows and paint my lips – otherwise my hands get tired. I’m an artist and I’m just kidding: sit at home with mine – and your lips are not only green, they will become iridescent. I also like to make nails for myself and my girlfriends – it calms me down. A couple of times in my life I went to a manicure, studied the process and now I do everything myself.
I don’t epilate, I don’t like it when my body is manipulated. My main care is I wash. In the context of body paralysis, this is already a serious achievement: I have a special shower chair to do everything myself. I love to have clean, fresh, good smelling hair. Nature has rewarded me with obedient hair – I don’t have to do anything special to make it look great. Recently I dyed myself blonde, so now I use masks to prevent my head from turning into a washcloth. People, when they see that I am clean, with some kind of hairstyle, it seems to them that I can do something – this is such a cognitive distortion. Like, if a woman looks good, it means that she is “all right”.