Women, who are burdened by the majority of care, logistics, financial load, as well as the emotional work for sick family members, are overcoming multiple obstacles during the pandemic, struggling against devastating statistics, especially those hidden ones, regarding sick people, dead people, those treated inadequately, those never taken care of. Quality and dignified healthcare, which should be a social responsibility, financed publicly from taxes, remains inaccessible to the majority. Although healthcare gained a public highlight, besides the diagnosis stating that it has never been worse and that there are expectations of further deterioration of public healthcare for cheap privatization, the obstacles and acrobatic navigating through healthcare remains a mystery of its kind. Through our Special Focus program, we have supported a research action of two activists, Marija Jakovljević and Jelena Veljić, and we have discussed the reasons, experiences and a certain exhaustion of their guide.
How and why have you sat with the idea of creating the Guide for Navigating the Health Crises?
M: I was (and still am) furious with the way of how the healthcare system treats people – my parents, my Roma colleague, my friend’s mother, and me as well. Not to mention the people who do not even exist for the system. It was all accumulated during the pandemic, especially given that the information flow has been made more difficult and we all had to figure things out in the craziest ways. On the other hand, in my case, many people got involved to help – to find us contacts, to introduce us to how things function, to drive us, enable us testing at home for a non-mobile person and there were also numerous other things I cannot even remember. Such practical solidarity is genuinely important to push through a crisis. Unfortunately, many people do not have such support, because the society and support networks are being systematically devastated for decades. Hence, I found it important to share back with the community what I have learned in that process thanks to others, to make it more available, so the next person doesn’t have to go through all those steps and feel like wandering in the dark. At that moment when I got the sense that I know what I should do, the desperation got replaced by persistence to provide my father with everything he has the right to and what he deserves. I wish to transmit this determination of fighting for health to others. I find it especially important when people, losing faith in the system, have given up on it, and many of them have turned to charlatans, who make them even more vulnerable. The entire situation is currently devastating, and it is clear that things have to change from the bottom-up. Yet, until the critical mass consolidates for essential changes, the void remaining after the demolition of healthcare system has to be filled with something – our goal is to remind people it can be different, nobody is alone in that struggle and there are ways to save each other, and then healthcare as well. And, additionally, I wanted to channel those negative feelings into something constructive, so they don’t devour me.
J: On top of everything Marija has said, I would add that this guide is a logical continuation of a research in which we participated some years ago – “How to Cure Healthcare”. There, we dealt with researching the causes of the poor situation with healthcare, whether they regard the lack of capacity, workers, or patients’ dissatisfaction, corruption, irresponsibilities etc. We have concluded that, besides then (and still) active austerity measures contributing to the reduction of already insufficient investments in healthcare, the main role belongs to the political system in which we live – capitalism – and that essential changes require making a radical turn in political direction, perspective and ideology. This is not relevant only to healthcare, but also for other aspects of the public sector, or those “services” that are necessary for the entire society and which must be fully financially enabled by the state, like education, social protection, electricity, water, etc.
Your research is comprehensive, detailed, and with clear guidelines on how to pass the game called public healthcare. However, what has surprised you the most once you started summarizing the information and research?
M: Once you go through the hell of the hospital in Kruševac and private vultures, you think that you cannot be surprised, but alas. The spectrum of horrors people experience in the healthcare system is wider than the unthinkable. After the first reading of gathered experiences, I had to leave the material because I could not deal with all of that. Only after a while , I managed to approach it again, to filter the solutions and organize ideas.
The list of negative surprises includes the amount of social vultures who throw hooks on patients and abuse their situations. For instance, taxi drivers who virtually force people who are not from Belgrade to ride with them and then they rip them off. Or all those scammers who call retired people, use their weaknesses or fears, rob them by selling them insane products and additionally endanger their health. Now I’m falling into moralizing but I really cannot comprehend that someone is doing such a job. Exploiting someone’s illness and the lack of empathy are striking.
What has somehow surprised us in a positive way is that the existing laws regulating the field of healthcare or relating to health are mainly not bad. I’m not saying they are terrific, they have a bunch of blind spots, but there is a level that could be upgraded further. If there is to be a political will…
I was also surprised to learn that the sixth year of medical faculty actually includes a subject exactly dealing with working with the patients, regarding everything that we are addressing as lacking or faulty in terms of relationships and communication. So, there shouldn’t be the need for us to come up with warm water and draw behavioral guidelines for the health staff. The thing is, this subject is being treated as something irrelevant. The consequences are more than obvious.
At some level, we were also surprised by the scope of organizations who work on really important stuff in the field of support to patients and their families but many of them are out of sight for an average person. For instance, my mom would never think that something like that exists, let alone to reach them out. This is not the responsibility of organizations because they are already working over their capacities, but the responsibility of the media who do not find it interesting to report about them, except in situations where they can wrap it in a “heroic” or “sad” story. I don’t know how but I am still surprised when such efforts to help people remain insufficiently visible.
J: In some moments, we both saw it as a big and personal challenge to articulate the description of the system and give advice. On paper, as Marija saif, the existing solutions for the fields processed by the current legislations do not look so bad as one may assume but for almost every item one encounters the “this simply doesn’t function” problem. Also, many CSOs dealing with particular problems relating to healthcare point out how the systemic, state level lacks the will for some new, maybe contemporary aspects of healthcare which need to be introduced into the scope of “services”, hence the state is frequently behind (and in some cases unresponsive or obstructive) with people’s initiatives asking for improvements of certain elements of the system. I see it as a part of a general strategy of directing healthcare towards privatizations and this is something that needs to be stopped as soon as possible.
As you note for yourselves, “access to healthcare now vastly depends on one’s class position, skin color/nationality, age, sex, sexuality, disability and other aspects regarding a person’s identity and social position.” How have we ended up in such a situation and what are the directions for curing healthcare?
M: I would say that the collective nearsightedness and the tendency to oversimplify the analyses of social changes have brought us here. The situation in healthcare is a part of a wider problem of accepting capitalist production, where everything is subjected to the market, even health. For a country on the semi-periphery of the capitalist system, which sold out its industry and is thoroughly destroying its public sector, so, a country dependent on international institutions which further push the austerity measures and commercialization of everything, it’s a question how much of a maneuvering space is there. However, this doesn’t mean that the resistance is futile. Different strategies for saving the mechanisms of social solidarity have to be considered, such as a functional public sector, including the healthcare within it. So, the problems are much wider and regard the global system of socio-economic relationships but also our relationships with the institutions which, to be honest, became troubled even before the capitalist transformation. I want to say that one level implies changing the system, while another regards developing responsible institutions which have to evolve, and not to allow their ossification and deterioration.
A few years ago, the two of us were a part of the research team analyzing the situation in healthcare. This project resulted in a publication called How to Cure Healthcare which gives a more detailed response to how we ended up here.
The second part of your question is much more difficult. There is no recipe, it requires working at all levels: from the systemic level – which would imply resisting austerity measures; to institutional level – for instance, cutting corruption, deterioration of professional and ethical standards; to daily level where we have to make space to be there for one another, not letting to be devoured by our individual pains, because we make the last dam to each other, defending one another from this avalanche of terror that caught us up in the form of healthcare system.
J: As mentioned earlier, when it comes to any essential change, we find it necessary to change the political orientation from capitalist to communist. Everything else are cosmetic changes of volatile nature which disappear with every minor crisis, with a standard excuse that crises are resolved by austerity measures. Besides a systemic, radical change, it is also necessary to work on changes at every level – healthcare has to serve the population, it has to be modern, institutions have to be equipped as much as possible, it is needed to expand the network of institutions so each settlement has an accessible primary health care and a short path to directing towards higher institutions or specialists, health staff has to be sufficient so everyone’s needs are met, and at the same time it has to be thoroughly trained to consider different positions, life situations or specifics of patients, which also implies eradicating any dose of intolerance, elitism, classism or similar negative attitudes regarding patients.
The citizens of Great Britain, at least given the research of public opinion, are very proud of their public healthcare (NHS), which is also now deteriorating there, but people are protesting and defending this system. Why do you think such rebelion still doesn’t exist here and isn’t possible at the moment?
M: I just recently watched a video where a girl explains how she has sent 133 emails so she could get an appointment through the NHS! Her persistence is mesmerizing! Over the past years, I chatted with all the possible institutions, from post office to taxes, all because of the health condition of my father, but what this girl has been through with the NHS is an unparalleled hell. Chasing all those institutions to do their job is so exhausting, it is an additional social work eating up time and energy (if you are not Joe Lycett, that’s the spirit we need! :D)
Anyway, in our case, I think that many see fighting injustices as an additional stress. Another thing is that a great majority doesn’t even know which rights belong to us (how would they even know?), so they do not know that they can and should rebel. The third thing is that, when you are in an acute crisis, you depend on all those people connected through public and private health institutions, and you have to scale and act diplomatically to get a minimum for the patient.
Regarding an organized social rebellion, I think that here class stratification holds the essential role. When it comes to ecological problems, they mainly hit us all, you cannot escape the polluted air, hence people of all classes join the struggles more easily. With healthcare, they can still escape to private institutions, although they do not ensure a guarantee of quality and safety anymore. But it is an important thing, when the ground beneath you is burning, if you have or you can gather assets, you will go to a private institution, you don’t have time to go to a protest and start lawsuits (you can do that later, when things settle a bit). Those unable to afford a private health service are left with the feelings of helplessness and isolation. These are paralyzing emotions. Although many are literally left to die by the healthcare, everyone feels abandoned and it makes it difficult to have people on their feet. Every new horrible news in the papers is not a proof that we are not alone but a confirmation that „things work like that and nothing can be done.“ Combativeness is systematically being killed through the media.
Yet, I cannot accept that all is lost and it cannot be better. It appears to me that more and more people of diverse profiles are initiating actions for defending public goods and human rights or even expanding them. If we have imported this neoliberal spirit of selling out everything and leaving people behind, we can also pick up the experiences of defense, for instance, #YourNHSNeedsYou. On the other hand, we have the heritage of resistance and collective organizing for public good, which has to be revived. So, I don’t think such rebellion isn’t possible, I think not all pieces of the puzzle fit to make it happen, but perhaps constructive rebellion will come quite quickly. There is too much sadness, anger and frustration accumulated due to injustices brought up daily by the healthcare system and it has to escalate at some point. I only hope that, meanwhile, we have realized the multidimensionality of the problem and that we won’t get satisfied with the mere patching up, because otherwise the ship will sink, and us with it, too.
J: The British NHS has a long history of deterioration, in fact quite longer and more radical than the one faced by healthcare in Serbia. For that, we can primarily thank the political system of socialist Yugoslavia and we can say that the little of the good things in healthcare we can see today is the remainder of the previous regime and social system.
The issue of the existence and non-existence of rebellion, as well as many other subjects, is quite complex and, at the moment, I couldn’t fully respond why people are not more engaged around numerous problems in Serbia (but also in Yugoslavia and further). I would assume that one of the aspects is that people are preoccupied enough by daily survival, that many of those struggles seem futile given that on the other side there is a monolith of a hegemonic ideology holding a consensus, with the exception of a small number of countries. On the other hand, when it comes to healthcare, as Marija said, people end up having to choose to urgently individually resolve a burning issue, with numerous complications and vicissitudes, or to also individually and disjointedly fight for their rights or change in the system which is always “held together”, and where it is difficult to win.
Yet, if we want to survive, the change is inevitable and every improvement of the situation will have to imply radical steps. We hope they will happen sooner rather than later.
Interview by: Đurđa Trajković
Translation by: Galina Maksimović
