Accepting limitations is a long process.
In the case of chronic illnesses, it may never be fully completed. Even if the diagnoses are embedded in one's own identity and even if your everyday life is set up to be as accessible as possible, there are still the symptoms: they hurt, don't let you sleep, make you tired and make eating difficult. Sometimes their non-existence is easy to imagine (especially if there was once a symptom-free period). But for many of us with chronic illnesses, a life without symptoms is so far away that only a foggy inkling of it remains because we have had the symptoms for so long - they are, after all, chronic. Chronic means that the symptoms last for a long time, somewhere between a year and forever.
Trying to accept this circumstance, that is, to admit to myself in a constructive way that I may forever have distressing symptoms, has a lot to do with unlearning.
For me, this process is particularly challenging in relation to my political activity. I would like to share these difficulties because I believe that many people feel similarly to me. I believe that social changes towards a more just and free coexistence are urgently needed and that these changes do not just happen, but that they have to be made by us.[1] And statistically, some of us, probably even more than we think, are chronically ill, or will be at some point. So why not start thinking about it now?
An intellectual struggle? Against the sick system?
For a long time I somehow thought that accepting my chronic illnesses was something to be done in an intelectuall way And that an intelligent, critical feminist like me would probably not have too much trouble doing so. I thought that I would complete this process quickly. This process in which I would think the right thoughts and derive the right actions from them. And that I would then continue as before.
I was wrong. Thinking, reading and discussing do help to realize that a large part of our performance thinking is capitalistic self-disciplining and that the idea of 'normal bodies' is anything but normal. But all the feelings of disappointment and shame about not being able to do enough run deeper than I had assumed.
In self-help books, I used to read about people who struggled wirth disappointing their family because they couldn't manage to play board games on Sunday or bring their children self-made bentoboxes to school. Or of people who were seized by a deep sadness when it dawned on them that the career plan would have to be abandoned, or that they might not be able to work at all. Or I read of bitterness because neither mountain biking nor interrailing works when everything hurts.
I always thought: That will not concern me. I don't want children, I've done enough interrailing, I never liked sports, and wage labor is only a capitalist necessity and will hopefully soon be abolished. I thought that these feelings arose because we lived in a capitalist, sexist, and fundamentally wrong system. A system that hates the unproductive and the sick. A system that we should collectively fight and replace with our more just and free alternatives. When the performance-forcing exploitative system is gone, we won't be so resentful of our sickness either, I thought. Therefore, it would certainly not be very difficult for me to accept my illnesses: Because, after all, I know that a large part of my problems does not come from my body, but from society, which does not know how to deal with sick people and which measures the value of people by their monetarily usable performance.
Ableist Thoughts in me
So I imagined myself fighting this 'sick system' for some time and then[2] I would wake up and accept my own state of illness. I would be sick, but fighting.
For my identity, a committed, extra-parliamentary understanding of politics has long been important: a bit of 'Get off the internet, I'll meet u in the street', a bit of Rosa, Simone, and Emma, a sprinkle of direct action. From that point of view, I have to be present somewhere and do something in order to act politically. That's not always easy, when sometimes I can't leave the apartment or the bed due to illness.
Nevertheless, I kept beliving that politics and being sick would quickly settle down in a healing way. In the first years of my illness, I even unconsciously and secretly believed that I might somehow - miraculously - become absorbed in my ideals. Then I would be fulfilled by my political activity and my body would function again. What a religious and ableist thought! It was fueled by the fear that maybe - maybe - maybe those medical authorities were right after all. Those who suggested that my pain stemmed from my discontented, hysterical mind.[3] How could I be sure that they were not right? Perhaps I was simply leading my life wrongly, not in accordance with my inner self, not in tune with my ideals - perhaps that was making me sick?
This fear came from deep inside, from the place, where all the ideas about diseases as punishments live, ideas, which I didn't know had already nested inside me a long time ago.
Standing on barricades with wind in my hair
Soon it became apparent that my illness-acceptance process, which I had believed to be abstract, was unleashed precisely because of the demands I placed on being politically active: Sick, I could no longer reliably attend meetings and make appointments, and I was afraid of repression many times over: What if I were arrested without having my medication with me, or had a crash at a demonstration surrounded by cops?
I felt misunderstood and non-considered when it was assumed that marching, standing, shouting, planning, sitting in cold, uncomfortable places was the necessary thing to do. This is what political struggle classically looks like: Motivated, strong, steadfast bodies with wind in their hair standing on barricades, ready to throw themselves into danger. But my confused brain interprets normal communication of body parts as pain and thus transfers the danger into myself.
I am not steadfast right now, nor am I motivated. Motivation needs a surplus of energy, steadfastness a functioning orthostatic system. And if I really want to accept the meaning of 'chronic', it also means to admit that it is possible that I might be neither steadfast nor motivated in the future either.
What does this mean?
The sour pit
Not being able to be who I would have liked to before I could even really try (because I got sick young), feels like swallowing an avocado pit soaked in acid. Like something, that has been promised has been snatched from me. And now I see my loss everywhere. I witness that the agency of others includes certain activities that are no longer accessible to me. I witness it when I notice that certain people in political spaces are not aware that these actions are not open to everyone. Or when people cultivate a 'Damn it, why does no one but me do ANYTHING, the world is going to the dogs' attitude.
The sense of a snatched promise is the privilege (and perhaps the myth) of a powerful embodiment that can step through the world shaping and participating without barriers. A privilege that I have taken for a natural condition of being human.
Nothing is natural.
And finally, perhaps it doesn't matter whether people are mourning mountain biking or left-wing political stuff. Both cut deep and remind us of our own death and transience and that we have less under control than we would like to believe.
Sure, I could accept my situation and discover the new scope for action that comes with it. I could learn that we can give up certain things and reinterpret others. In terms of anarcha-feminist politics, I've actually been lucky: it's multifaceted. And many thought leaders and comrades have finally pointed out that standing on barricades and getting stuck again and again - however inevitable this may be - is too short-sighted as the epitome of revolutionary politics.
I had forgotten to deconstruct my own idea of politics.
I had forgotten to unlearn the ideals inscribed associated with ablebodied masculinity. I had forgotten to ask who could not be part of this steadfast conception of politics, who might be doing care work instead, and why this, too, receives so much less respect here.
I had forgotten that feminists have long said that the private is political, and also that this division is actually just as lazy as all those other pesky binaries we could so benefit from overcoming. I had forgotten that my strict division into political advancing and apolitical lying was too simplistic. I had forgotten that truly revolutionary and emancipating politics must embrace the capacities and needs of our multiplicity. I want to use these thoughts as a bandaid for my worry, a bandaid for the worry of doing too little for a better world, of participating too little and being not visible enough as one of those who try. If I'm honest: It was also this fear that kept me in bed, in addition to the symptoms. It was this fear that prevents me from finding forms of political action that are open to me and my sick friends.
So I want to unlearn those elements of my understanding of politics that do me no good and instead, together with other sick people, design an understanding of politics that strengthens our ability to act instead of weakening us through guilt. An understanding of politics in which we can take care of ourselves without slipping into the individualistic self-care business, in which acquiring a face mask is equated with personal liberation. An understanding of politics that is explosive and encourages us that change is possible and necessary.
But what comes when this unlearning process succeeds and space is made for a more comprehensive conception of politics? How is it to be emotionally classified when, like Johanna Hedva, we lie in bed, fist raised to the sky in solidarity while down on the street the protest passes by? And how is all this understood in the knowledge that we - those who want a fairer and freer world for all - cannot do it without steadfast and reliable fighting and organizing? We have to show up on streets and defend our spaces. And it is very likely to get more guresome the greater the danger we are for the bad system. How can all of this be communicated and incorporated into a disease-accepting, political self? How can I make out my role as a chronic and political sick person in this?
I am looking for answers.
I am looking for such answers and for people who are in the same situation. In search of a solution for me, for us. I have a suspicion: there are many of us. Talking with friends, we realize again and again that it might help to define ourselves not as a single subject, but as part of a multifaceted and large movement. A movement in which what can be done is done according to abilities and needs. So the saying "Who, if not we? When, if not now?" for chronically ill politicking could be: "Not me, but we. Solidarity greetings from bed" and "When, if not then, when I feel a bit better again." The trick, however, is surely to trust that one notices the moment when it is nevertheless necesarry to take our sick bodies and smash them against the bad system or to place them protectively in front of our new structures.
A further suspicion: It would also be helpful to criticize and to abolish leftist-scene posturing and devaluation of (self-)care work. This also needs to happen within ourselves, so that we can collectively release ableism and its capitalist performance demands from us again and again. It is certainly also important to note connections between one's state of health and mechanisms of oppression: Capitalism, racism, sexism, classism, hetero- and cisnormativity, ableism, and other relations of discrimination and oppression influence the occurrence of trauma and illness, impede access to needed resources a mortality rates from various diseases. And in the neoliberal system in which we live, certain experiences, difficulties, and human conditions are increasingly defined as medical problems for which medications are to be purchased. At the same time, people are fighting for the much-needed recognition of certain diagnoses that today still have too little social legitimacy to allow those affected to access appropriate help.
Being sick is complicated terrain. What emerges from all these reflections and feelings, however, is the beginnings of an idea of radical self-care. Sometimes it may consist of staying at home and being kind to myself, even though 'those who are trying' are now all at some political event and my political fomo is making me panic. Sometimes it may consist of standing up to doctors and other gatekeepers and supporting each other in the fight for needed (medical) resources. Sometimes in addressing ableism in the radical left or in feminist spaces. Sometimes in figuring out the fine line between radical self-care and the consumerist self-care version of it, which is ultimately about optimizing oneself.
I write from the position of a chronically ill person who hopes that together we will design a radical (self-)care that is so deeply rooted in all of us that our struggles for acceptance of illness no longer have to take place in our own relationship to political activity, because it is clear that there is a place for everyone here. Everyone who shares similar ideals, no matter in what form, when, or how much they are able to show up. Radical self-care is not only important for chronically ill feminists, but for everyone, because the prevailing condition makes us all - sooner or later - hurting, anxious or sad. In order for our struggles to have long-lasting power and our lives to be worth living, we need tools to be there for ourselves and for each other.
Text published: Text veröffentlicht: RosaRot : Zeitschrift für feministische Anliegen und
Geschlechterfragen (2020), Heft 58, S. 25-29
References
Hedva, Johanna: sick women theory
Sontag, Susan: Illness as Metaphor & Aids and its Metaphors, London: Penguin 1991
[1] It is often tricky to assume a 'we' because our respective experiences depend on so many factors. I use the 'we' on the one hand to speak of me and my sick friends, and on the other hand as a 'we' that includes me and you, a person who has picked up the RosaRot and is ready to engage in a text about chronic illness and politics.
[2] Calling a system 'sick' uses a reality of people's lives as a metaphor for something bad. Understanding illnesses as metaphors can have a negative effect on those affected, as Susan Sontag, for example, noted in 1978 in Illness as Metaphor. The system is not sick, it is exploitative and oppressive. And diseases, even if they are often wished away by those affected, are not necessarily bad. They can open up new perspectives and ways of life. What the Disability Movement has learned regarding disability and social construction of barriers and accessibility also applies to illness: The problem is not (only) the symptoms, but how they are dealt with in a society. The use of the term 'sick system' at this point is meant to indicate the author's ignorance in this regard at the time of the reflections described.
[3] Hysteria, in my experience, is no longer addressed as such by doctors, but finds its heritage in hints concerning the bad "life hygiene of a young woman", which are said to trigger the symptoms. I found traces of hysteria in advice from medical authorities to "finally relax and not get into it". I found them in controversies about contested 'women's diseases' like fibromyalgia or chronic fatigue syndrome, whose legitimacy and access to needed resources is still denied due to 'lack of objectifiability'.
Fotocollage mit Fotos von: JP Valery, Joice McCovn
