Invisible People of Belarus is a photobook accompanied by critical reflections and testimonies which documents the lives of disabled people and Chernobyl victims living in governmental institutions in Belarus. These institutions are known as internats and function as something between an orphanage, asylum, and hospice. Internats often exhibit glaring deficiencies in terms of how they care for their residents: very little physical or educational therapy is offered; there are few opportunities for recreational activities; and the right to a private life is not respected, with romantic relationships between residents prohibited. Integration within the local community is virtually non-existent. Their location makes it difficult for the families that would like to stay in touch with their children to visit. Some are located in very rural areas and with almost no public transport links. All internats are either fenced off or walled. This separation stands as a metaphor for the way disability is thought about in Belarus: misunderstood and better shut away.
I struggle to know what to say. Lida, an 18-year-old epileptic girl was sent here after her father killed himself and her mother was unable to look after her. She is telling me about children. How much she loves them. But she is sad. She tells me that she can’t have any. That’s what they have told her. That because of her illness she can’t have her own babies. After a seizure she ended up in hospital and she met a boy there who she liked. But he is not allowed to visit her now she is back here. He is ‘normal’.
I think of the fabulous instances of care and of community that I have witnessed. Of women with Down syndrome looking after infants with love in their eyes. Apparently, they’re not competent enough to live a life outside. But they are competent enough to take up a position of authority here. Their maternal feelings are convenient when they represent free labour.
Yet Lida’s dream is dashed because it is an inconvenience. And I think of those I have seen toiling in the field, unpaid, of course. While work may be healthy, the situation is perverse: too abnormal to live with the rest of us, but capable enough to grow and harvest food. I think of questioning Lida, of saying that she shouldn’t be here, that she can have children of her own. But I can’t offer her a way out and I worry that my words will cause pain. My silence, then, perhaps affirms what she has been told: that she is different.
Over the past two years, I have documented the lives of residents of internats in Belarus. Internats function as something between an orphanage, asylum, and hospice. Healthy children without parental care are sent to orphanages, disabled children are sent to internats. Without the proper provision of care in the community and support for families who wish to raise children with special needs at home, a range of people are housed in internats who, in other European countries, would not be subject to institutionalisation: people who have Down syndrome, for example, or epilepsy, mild cerebral palsy, those who are HIV positive, the blind and deaf, people with autism, and individuals with facial disfigurement and special educational needs. The spectre of Chernobyl, now 30 years distant is still evidenced by the great number of people in their late-twenties living in Belarus’s internats who suffered developmental and physical problems because of their prenatal exposure.
There are glaring deficiencies in Belarussian internats: very little physical or educational therapy is offered; there are few opportunities for recreational activities; and the right to a private life is not respected, with romantic relationships between residents prohibited. Integration within the local community is virtually non-existent, with the most physically able residents only leaving occasionally when international volunteers organise a trip. In the subsequent piece of writing ‘X’, an anonymous NGO worker with decades of first-hand experience of working in internats gives a fulsome description of the state of institutionalisation and the reasons for it. In this text, I attempt to do something different: to introduce Belarus in a wider context; to explain my personal motivations for undertaking this project (and their political importance); and to dwell on the ethics of photographing vulnerable subjects.
Belarus remains the last dictatorship in Europe. This is a place where the president, Alexander Lukashenko, is seen as fearsome and God-like, and where people still fear the watchful eye of the KGB. When you walk the streets of the capital, Minsk, you could easily mistake yourself for being on a movie set. The streets are immaculate, the grass is perfectly cut, the architecture is glitzy and modern. I found myself wondering what could be hiding behind this façade. After all, Belarus is the only country in Europe that is not a member of The Council of Europe, a regional organization which promotes adherence to human rights and democracy. It is a place where the state propagates a particularly Soviet notion that its power is not to be challenged; that governmental bureaucracy, with all its obvious failings, is immutable.
Where the will of the people might desire reform, the difficulty of communicating those desires – of creating a bedrock of collective action and dissent – is immense. The punishment for independent free thought and its transmission is grave. Given the dire state of press freedoms and high levels of corruption in the country, it is unlikely that the reality of life in an internat would be reported in the local press. Thus, I travelled to Belarus to learn about life in internats; to observe; to understand; to talk with people; and, where appropriate, to take photographs. But the stakes are high. Taking images in the internats is officially prohibited. I heard of a case where an NGO worker had photographed the abuse of an elderly woman. She was dragged along the floor naked by her elbows. When the directors of the internat found out, they banned the NGO from working there for three years. But if you judge the situation correctly – assess the different environments of the particular institution, and build relationships with the residents and staff – you start to realise that there are moments in which you can take pictures without being denied access. I felt strongly, because of both personal and political reasons, that there existed a story that could, and should, be told.
As I write this, I wonder how much to discuss my motivations for focusing on this subject. Would this discussion detract from residents’ plight? It might imply that this work is just as much about me as it is them (it is not). Before and during my first trip to Belarus I thought deeply about how much I should show and how to show it. I considered whether taking and showing images of extreme suffering, malnutrition, and neglect would be the best way to begin a discussion about the lives of residents, and more generally, to inform a popular discussion about disability within Belarus itself. I believe I found appropriate ways to photograph and a constructive way to display some of those photographs here. Below, I address these internal dialogues in detail, discuss their ethical implications, and show how this informed my photographic practice.
To the feeling that my relationship to this story detracts from its particular importance, I would say that this relationship is of significant concern. Of concern, not because my attention to them evidences any kind of particularly noble attitude on my part, but because my personal history demonstrates that care for another is often inaugurated by a realisation that, but for accident of birth, one would find oneself in the same position. I am a child of Chernobyl, born in Poland in 1986, a few weeks before the accident. As a baby, I was given Lugol’s solution, to protect myself from the harmful effects of radiation. Children in Belarus were not. In a state of public denial, the Soviet authorities did not protect their populous properly. If it weren’t for my good fortune as the citizen of a country that cares for its people, I too could have suffered because of Chernobyl. This ‘personal’ connection is, in fact, far from it. That connection, premised as it is on the differential care that states afford their citizens, functions as a reminder that our geographies define us in an inherently unjust way. Rather than signalling a facile sympathy, my folding into this story shows that things could have been different. My body, as yet apparently unharmed by Chernobyl, stands as just as much a declaration of an environmental crime as those bodies demonstrably affected by the disaster. While universal rights safeguard all in theory, the lived practicalities of ethics are felt deep inside.
Yet, this isn’t all about Chernobyl. Internats house a range of people, some with conditions that would not in any way prevent them from living independently if it weren’t for societal attitudes towards disability. This is important to remember, for while scientific efforts to decontaminate agricultural land are absolutely necessary, it must also be remembered that there will always be subjects who do not fit with some cultures’ ideals of what constitutes a ‘normal’ body or mind. Those are subjects who we should take the most care of, and with whom we should forge a being in common, not a divided body politic separated by walls and fences.
The second impulse – the feeling that there were things I had to be very careful in photographing – is driven by the difficulties of visually representing disabled people. There has been an understandable withdrawal from photographing marginalised subjects because of an increased awareness of a number of things: the act of looking can be voyeuristic, allowing for titillation or patronising sympathy; the taking of the picture can be exploitative, accruing vast gains to the photographer and not the subjects themselves; and, on a more pragmatic register, real harm can be done by photographically intervening in sensitive situations that the photographer does not fully understand.
Yet people should be made aware that conditions in some internats are manifestly unjust and the accompanying societal prejudice. With the desire to raise awareness comes the impulse to focus on easily identifiable instances of trauma; poor living conditions in internats; children malnourished and starved of stimulation. These are things we think we can recognise as manifestly wrong. These abandoned subjects deserve attention. Sometimes I toy with the idea that this is a situation that must be seen and so the fact that they cannot vocalise their consent should not stop me from taking their pictures and showing them to you. One could say that we have turned away from their plight for too long; that images of trauma can effect a real change.
Of course, an exposé has its place, but let that be in the appropriate time, place, and medium. In this context I have decided that the mothers’ and others’ testimonies I reproduce here are damning enough of the institution. They expose enough of the institutional failures without needing to use images of people who have suffered enough. Given that disablism provides the conditions for their abandonment, I have seen no convincing argument that showing the contortions of bodies in pain, the automatic self-harming repetitions of underused minds, and the disfigurements of those unable to speak will work, in the context of a book, to change their lot. While this is not a typical art photography book, including, as it does, interviews with its protagonists, excerpts from literature, and an essay on the relationship between the body, the photograph, and institutional power, I am not comfortable with the objectification that would be implicit in squeezing images of suffering into these pages.
You will not see pictures like that in this book. For you, reading that they exist in that state should be enough.
My photographs in Invisible People of Belarus focus on residents who are mobile, communicative, and who I could form a sociality with. These form a story of those people as human beings; as people who suffer and struggle against injustice in their everyday lives; and as people who look after each other; build long lasting friendships; and fall in love even in an environment that does not seem hospitable to that feeling. Resilience is important. And so are the personal relationships and characters of the people living in internats. Internats flatten various different disabilities into a catch-all concept of abnormality and then mandate that this abnormality be confined in an institution. Yet within those institutions there exists a plurality of relationships and different ways of living as varied as in the society outside their walls. Perhaps more varied. I tried to collaborate with my subjects to make them as comfortable as possible and to give them a sense of ownership over how they were being photographed. I focused on their creative endeavour; their practices of making art and making self within an institution whose ethos often denies the right to self-determination. I have accompanied my images with as much and as varied contextual information as possible so that the reader can understand the historical and familial circumstances, both of subjects and photographer, that have led up to the moment of taking the picture. I hope that this information will render the images dialogic: not a frozen depiction of Otherness, but a gentle animation of character emplaced within a milieu rather than the rigid frame of the picture.
If you feel an affectionate turning towards these people, then I have succeeded.
 There are specific internats for babies and infants, young people up to the age of 18, and for adults. In practice, young people often end up living in children’s internats until they are 30.
 Freedom House outline restrictions on the press and the punitive actions taken against journalists in this 2015 report: Reporters Without Borders state that Belarus has some of the worst press freedoms in the world, ranking it 168 out of 179 studied countries. Transparency International found it to be one of the most corrupt (107/168). Almost 80% of Belarusians surveyed by them believe public officials and civil servants to be corrupt.
 In Poland, everyone under 16 was given this iodine solution to protect them. The government administrated stable iodine to 18.5 million people in 3 days, the greatest prophylactic action in the history of medicine performed in such a short of time.
 And, if you are from one of those countries, yours too.