Image Description: Marco Cavallo, the blue horse created by patients, artists and doctors in Trieste in 1973, which became a symbol of the movement to close the asylums. By Wikimedia Commons / Itinerari Basagliani, CC BY-SA 4.0
European memory studies have boomed in recent years, Monika Baar points out, but the field has largely ignored the experiences of disabled people. As she sees it, memory cultures grow around anniversaries and foundational moments, around something concrete enough to gather a commemoration, and disabled people have rarely had that kind of anchor. Their experiences sit awkwardly across social history, the history of education, and the history of medicine, she argues, and the category itself barely exists in the archives, where a file is more likely to be marked as ‘tuberculosis’ or ‘deafness’ than as ‘disability’.
Baar is Joint Chair in the History of East-Central and South-Eastern Europe at the EUI Department of History and the Robert Schuman Centre for Advanced Studies, and Dean of Graduate Studies. Her project ‘Writing disability into European memory cultures’, supported by the EUI Research Council, sets out to recover that missing chapter, with a pilot study on Italy and a particular interest in the disabling effects of industrial and environmental disasters. It builds on the ERC project ‘Rethinking Disability’, which she led before coming to Florence.
We spoke with Monika about a career she did not plan, archival material saved almost by accident, and what European history looks like once disability becomes the primary lens.
You trained as a historian of nationalism, a long way from disability. The turn came from an unlikely place: a two-paragraph article about guide dogs. How did that happen?
Somewhat by accident. Once I had turned my doctoral thesis into a book, I think I had grown a little tired of the topic, although I did not yet know it. Then one day I was taking a late flight from Berlin to Budapest, where my family lives. I was too tired to do anything meaningful, so I did something I would never normally do and picked up the in-flight magazine. There was a very short article, maybe two paragraphs, about guide dogs for blind people. It explained that the first school to train them had opened in the German city of Oldenburg during the First World War, when so many soldiers had lost their sight that they needed help. At the time I was about to start a job in Groningen, which is very close to Oldenburg.
When I got back to Berlin, I sat down in the library and, instead of ordering books on nationalism, I started ordering books on disabled veterans and their dogs. First, I became interested in the guide dogs, then in the history of animals, and through that in disability. It was an unusual change, and several people were afraid I had lost my direction. You know, in academia we are not really encouraged to follow our instinct. We are supposed to be disciplined and strategic. This was the opposite of that, and with hindsight I am very happy I followed it.
That instinct became a full project, and you gave it a name: ‘distory’. What does it mean, and why does European history need it?
In the 1970s, when feminist historians wanted to write the experiences of women into history, they playfully called it ‘herstory’. Historians of sexuality later set out to 'queer' the field. In a similar spirit, this is ‘distory’: revisiting European history through the lens of disability.
The difficulty is that memory studies tend to follow a particular logic. They attach to anniversaries, to foundational stories and big moments, to something tangible you can gather around and remember. Disability has rarely offered that, partly because it has not long been a subject of serious scholarly inquiry, and partly because it is a far more elusive category than class, race, or gender. It can mean so many different things that it tends to get lost. My earlier ERC project, ‘Rethinking Disability’, even became a series of webcomics, precisely because the subject is so often seen as stigmatised or dry, and we wanted people to think about it in fresh ways.
Part of why disability gets lost in historical writing, you say, is brutally practical, since the records often do not survive. What happens to the archives of disabled people and their organisations?
Take the archives of the World Health Organization. If you go there because you are interested in disability, you will not find it as a heading. You have to look under rehabilitation, or under specific diseases. Some archives also have a policy, for reasons of space, of destroying documents that have not been consulted within a certain number of years. When they give you the catalogue, they mark the destroyed files in red, and you see that those are exactly the files you would most want to read. Anything to do with disability that is not strictly medical tends to be treated as unimportant, so it is the first to go. I am also aware of a case in which the materials were saved not because they were considered valuable, but because the costs of shredding were deemed too high.
Let me give you a concrete example, because I would also like to pay tribute to the archivists who helped us. One of the most important international organisations of disabled people after the Second World War, FIMITIC (today the International Federation of Persons with Physical Disability), kept its archives in banana boxes, stored in the homes of its presidents and vice-presidents. It travelled from Italy to West Germany and then to Hungary. When the Hungarian vice-president died, his family wanted to discard them. They called the organisation's headquarters, by then in Madrid, who promised to come and collect everything, but never did. So, the boxes ended up at the Hungarian association, left outside in the open air. The Open Society Archives in Budapest agreed to take a look, and they took it in. This is how serendipitous it is. It is a great success, but it is far more typical that such documents are simply shredded or thrown out.
Where sources do survive, you argue the disability lens can unsettle settled histories. The Nordic countries are held up as model welfare states. What does it reveal there?
Sometimes the lens turns a narrative upside down, but more often it nuances it. Everyone knows that the gold standard of the welfare state is Scandinavia, the Nordic countries. Then you look at what was done to severely disabled people there until quite recently, in the 1960s and 1970s, the sterilisations and other abuses, and you get a very different picture.
Commemoration tells a similar story. Disabled people were among the first to be killed during the Holocaust, yet they were the last to be remembered. In Berlin, the memorial to disabled victims came last, and with the smallest budget. I set some of these examples out in an essay for the European Observatory on Memories.
And there is a double effect. The stories you recover are striking, sometimes extraordinary, and that is partly why they are worth telling. But by telling them, you also realise that disabled people were present in every part of society, in every country. The lens does two things at once, because it restores an agency we do not usually grant disabled people, and at the same time it shows them as ordinary participants in history rather than as exceptions.
That fuller picture is not one of easy solidarity. The movement had its own hierarchies. Within disability activism, who got to lead, and whose experiences ended up at the margins?
Like any social movement, it was shaped not only by solidarity but also by internal tensions. Historically, the movements were often spearheaded by a relatively privileged group: well-educated men with physical disabilities, who did not always recognise their own privilege. People with mental illness or with intellectual disabilities were pushed to the margins, and their memories were suppressed by a stigma that came not only from the non-disabled world but from within the disability community itself.
You can see the same hierarchy in what survives. The institutes for blind and deaf people kept records from the Enlightenment period onwards, so we know a great deal about them. The history of psychiatric institutionalisation, and of institutions for people with intellectual disabilities, is one of the most neglected fields, and it is also one of the hardest to study, because the files either do not survive or cannot be consulted. Remembering this more contentious side is not a weakness in the story but allows for an honest understanding of what the movement achieved.
Those hierarchies deepen where disability meets other kinds of difference. From your course on intersectional histories, how does that change who gets remembered?
Disability is almost never a single condition. It intersects with class, gender, sexuality, and citizenship, and someone who belongs to more than one marginalised group can end up falling between the movements. A a disabled gay man, for instance, might be remembered neither as part of the LGBTQI+ movement nor as part of the disability movement. In some countries, women within the disability movement felt so excluded that they formed their own groups, and then had to fight a double marginalisation. The aesthetics of the body were judged more harshly in women, which affected everything down to their chances of marrying, so the same impairment could mean something quite different for a woman than for a man.
There are also darker intersections. Roma children, for example, have been classified as intellectually disabled in very high proportions, which is really a form of segregation in the school system and the result of total disregard for social inequalities. These are exactly the experiences that a careful memory culture has to hold on to, and they are the ones I try to bring into my teaching: together with my colleague Benno Gammerl, we are offering a course on intersectional histories.
Running through this is agency, even under regimes built to deny it. In 1970s Budapest, the first Catholic mass in sign language was held in the open, under an authoritarian state. Why does a moment like that matter?
The phrase I keep returning to is ‘the power of the powerless’ as it fits the disability movement well. We tend to assume that disabled people have little agency, and that under an authoritarian regime they can have none at all. The history shows otherwise. Disabled people sometimes took to the streets precisely because the authorities, even repressive ones, hesitated to use force against them, just as they hesitated against protesting mothers with small children.
Some of these moments are very small and very vivid. Picture that mass in 1970s Budapest: It is conducted in sign language, in the open, in an authoritarian state, at a time when even the Vatican had no regulation on it. Perhaps 20 people were involved. But if you look at European history through this lens, stories that would otherwise never come to light suddenly become vivid. One does not necessarily expect that in Spain in 1976, in the wake of Franco's death, disabled activists held protests and sit-ins in Madrid and Barcelona and helped secure a place in the new constitution.
Where stories like that stay invisible, you blame the language barrier. Franco Basaglia is a national hero in Italy, almost unknown beyond it. Why has his legacy travelled so poorly?
This is what I mean when I say the field needs to be Europeanised. Both disability studies and the history of disability were founded, at least officially, by British and American scholars. That was a good first step, and they were genuinely interested in their own environment. The trouble is that they then universalised their particular case and produced concepts that make sense locally but not necessarily elsewhere. In the Anglophone frame, for example, activism means going out into the street to protest. In several countries that did not happen, or it took quieter, more consensual forms, and those forms get written out.
Basaglia is the clearest example. In Italy he is a national hero, but outside Italy he is known by almost no one, even by people in the field, because of the language barrier. He set out to close the asylums, first by removing the internal walls, then by reforming psychiatry on far more humane lines, which eventually led to a law that closed them. Here in Florence, the former San Salvi psychiatric hospital, shaped by the reforms he inspired, has been repurposed, and there is now a memorial with a QR code and a small theatre company on the site. We marked his centenary with an event two years ago. Once, people came on something like a pilgrimage from all over the world to Trieste to see what he was doing. That is the kind of memory the Anglophone lens leaves out.
For all the gaps, you see something shifting close to home. What gives you hope?
Attitudes are changing, and not only in the archives. Since the pandemic especially, mental health is far less of a stigma. Researchers today have no difficulty saying that they have a mental health condition, asking for a deadline extension, talking about it openly. Among professors and staff members you still hear it much less, so the stigma has not entirely gone.
And the impact is visible here in a very concrete way. A group of EUI researchers recently set up a Disability History Working Group entirely on their own initiative. Some members of the Working Group are also contributing to the research project on disability and memory, and we recently published a call for proposals for a special issue on disability memory. I did not ask anyone to establish this Working Group, I did not actively encourage it. They did it themselves, and that tells me the field is starting to take root.
A note on terminology: both 'disabled people' and 'people with disabilities' are in current use. The UN Convention on the Rights of Persons with Disabilities uses the latter, while many disabled people and much European disability scholarship prefer the former, on the grounds that people are disabled by social barriers rather than by their bodies. Monika Baar uses both in her writing, and discusses the question in her essay for the European Observatory on Memories.
Monika Baar is Professor of East-Central and South-Eastern European History and Joint Chair at the EUI Department of History and the Robert Schuman Centre for Advanced Studies, and also Dean of Graduate Studies. Her project 'Writing disability into European memory cultures' is supported by the EUI Research Council, and follows her ERC Consolidator project 'Rethinking Disability'. Her recent and forthcoming publications include the co-edited volume Writing the History of Disabilities: Agency, Intersections, Concepts (Bloomsbury) and Disability in the Arab World (Leuven University Press).