Traveling through Remembrance as Praxis with Disability Baggage – Beatriz Miranda

Mediating ‘Remembrance as Praxis and the Ethics of the Inter-human’ by Roger I. Simon, Mario DiPaolantonio and Mark Clamen from vol. 4 (2002) The Ethico-Political Issue

As neo-liberal logic increasingly fosters a narrow conception of what constitutes responsibility, a central question for cultural study in our times has becomethe ethical, pedagogical and political implications of various practices of historical remembrance (Simon et al.:2002)

In volume 4 from 2002 Culture Machine confronted us, or at least those of us who have been searching history for responses to poignant issues of injustice, discrimination and violence, with a profound, generous and extremely compassionate article by Roger I. Simon, Mario DiPaolantonio and Mark Clamen I. ‘Remembrance as Praxis and the Ethics of the Inter-human’ is, as Arthur F. Frank (1995) would describe it, ‘as much a work of self-healing as of scholarship’. As a reader and as someone in constant and intense search for self-healing, I encountered the text as a sort of ‘counsel’ narrative. The piece raised a number of questions for me about the responsibility towards life that every generation receives as its historical legacy. It also offered guidance in writing this piece. Focusing on the ‘testimonial’ legacy of the Jewish population massacred during the German occupation of Vilna (1941-1945), the authors explore the possibilities of remembrance as a powerful tool for both ‘critical learning’ and ‘ethical practice’. They understand that practices of remembrance are always already caught up in the obligations expected by the transitive character of the testamentary act, the act of writing, speaking, and imaging so as to bear an educative legacy to those who “come after”’.

While reading the article, I could not stop myself from dissecting it by using disability stories, of which I have become a sort of ‘hereditary interpreter’. This exercise resulted in a meditative invitation issued to (this particular) reader to address what I would like to call questions of memory and their relation with the heritage bequeathed upon those whom the world has erroneously designated as ‘not-normal’, and upon their families and communities. The paragraphs that follow convey the urgency to provide a civic place for the remembrance and recognition of ‘wounded’ bodies sacrificed by history in the name of ‘imperfection’ or ‘abnormality’ – simply for being ‘disabled’. Nonetheless, I argue that a prior act of critical reflexion on what this process of remembrance means for individuals, communities and governments is required. The argument that follows offers a dialogue between the original text by Simon et al. (2002) and two contributions from the field of disability studies.

I. Memory, heritage and disability: the case of genocide

On April 7, 2004, the world, and especially the African countries, joined Rwanda in remembrance ceremonies to commemorate those who had been the object of recent brutal violence. Human rights organizations demanded of the international community that this should be the last genocide that the human species would ever witness – a tragedy that, at the time that, amounted to the assassination of 20 percent of the country’s population. Amongst those 20 percent there were disabled people, yet their murders were ignored, forgotten, or worse, ‘not named’. Denouncing this double massacre – genocide and disremembering – Masakhwe (2004) criticizes the cynical act of appropriation of this memory in official discourses of remembrance. That act paradoxically activated a sort of story-teller testimony, which nevertheless resulted in a disengaged form of information transfer. Masakhwe writes: 

According to Mr. Theodore Simburudali, a commissioner with the Rwanda National Commission on Human Rights, ‘disabled people suffered intolerable horrors. They went through hell on earth. There are very few disabled who survived during the genocide. They were killed … and many maimed the more. Hundreds were abandoned. … [T]he Gatagara Centre for disabled persons situated 47 km from Kigali, once a thriving centre for rehabilitation and skills training, was attacked. All the disabled people in the centre were senselessly murdered in cold blood. The workshop and all the equipment at the centre were looted and others destroyed. The specialised manpower at the centre regardless of their ethnic background was butchered. As a matter of fact, Rwanda now suffers a huge deficit in terms of well-trained men and women to support effective rehabilitation and specialised management of those with disabilities. … Watching video cassettes of the disabled persons from this centre, helplessly looking for help during the slaughter, would leave you breathless. This happened as the troops both foreign and local that could have helped, just watched as if they were watching a football game. As if they were on a picnic!!!’ 

Masakhwe concludes his article by advocating the restoration of the rights of disabled people in Rwanda (or any other place) by, among other measures, preserving the memory of historical events and places. However, the historical complexity of disability raises questions about reasons to preserve it and the interests of the diverse social actors involved. It seems to me that a ‘turn to ethics’, as appealed to by Simon et al., could be equally detected in Masakhwe’s article. His claim for understanding memory and heritage beyond just condemning publicly crude and violent acts speaks for the implementation of an ‘ethical practice and pedagogy of remembrance’. Such implementation would aim, ideally, at not simply raising awareness but at provoking states of individual and collective awakening with regard to the way in which disabled people have been, and still are, violently and silently erased from historical memory. As Simon et al. suggest, Ultimately at stake in such a practice is the question of one’s attentiveness to the stories and images addressed to us that arrive from another space/time, stories and images that insist remembrance be accountable to the demand for non-indifference’.

So, if the main point regarding an ethical preservation of historical memory – the ethical conservation of narratives, artefacts, places, and objects – is about collective and individual non-indifference, I would like to suggest that the question that follows such an affirmation is ‘why?’. Why do we want to keep a photograph, a monument or a space alive? What would we like to pursue when places like the Ndira Centre for people with intellectual and mental disability who were massacred in Rwanda are demanded to be preserved? Furthermore, I would like to suggest that what these questions put at stake is the fact that a consciousness of history might become a responsible historical consciousness’, to cite Simon et al. Such consciousness demands what the authors have called the ‘pedagogy of remembrance’. The lack of such a pedagogy of remembrance will mean that, as cruel as it sounds, episodes similar to the genocide in Rwanda are in danger of becoming just one more case study among those that are discussed by scholars. Instead, an ethical and pedagogical practice of memory should echo the claim from Masakhwe that ‘disabled persons demand and deserve justice, fairness and an unambiguous assurance that what they went through would be a thing of the past. Never and never again should they be subjected to such sub-human indignity and degrading treatment…’ (2004).

The provocative text by Simon et al., and the highlighted convergence between civil responsibility and the ethical practice of pedagogy of remembrance, interrogate the specific responsibility that every human being carries for the Rwanda events – and the implications this has for societal change. I use Rwanda here as standing for random acts of violence and injustice that affect individual and collective lives. In particular, my brief analysis aims to examine the inherited responsibility of individuals and communities towards the role played by the remembrance of violence against disabled people. I refer to the type of value that could be given to the disabled lives and their testimonies as ‘counsel’ narratives (Benjamin, 1968). In other words, I ask how the experience of pain and suffering (be it externally or internally caused) of disabled people, and the material preservation of their historical memory, signify the possibility of shaping critical teaching and reflective learning communities. By asking these questions, I position disability as an embodied memory that represents remembrance.

In a short article reflecting on a comparison between the Nazi elimination of disabled people and the reasons behind the Rwanda genocide Colligan concludes that ‘disability had always lurked in the shadow of historical memory making even those killed in precolonial times categorical rather than individual targets’ (2008: 29). Despite the lack of recognition of the massacre of disabled people in Rwanda, the importance of Colligan’s argument lies in bringing together the history and memory of disability with the sense of ethical responsibility that communities inherit. Such responsibility obliges us to inspect the actual meaning embodied in monuments, institutions or spaces preserved as national or world heritage and their impact on our lives. For instance, what are the messages that the medical and psychiatric institutions where physically and intellectually impaired infants and adults, killed between 1939 and 1941, are trying to convey to us and to future generations? Or what does the hostel that has been built in Hadamar, ‘on top of the gas chambers [as, paradoxically] the only lodging in the area … accessible to wheelchair users!’ (Colligan, 2008: 23), symbolise for the community surrounding it? According to Snyder & Mitchell (2010), the programme known as T4 took the lives of 240,000 disabled people between the years of 1939 and 1941. Through reviewing this programme, Colligan seems to conclude that remembering disability entails becoming aware that the history of disability is inevitably intertwined with the whole of human history, which is drawn and built everywhere and at any time. Buildings, theatres, coliseums, jails, houses, schools and institutions of any type are burdened with memories of those whose lives have been wasted owing to ‘imperfection’. Diaries and letters bring into life a language implemented by nationalist states and transnational ideologies fixated on perfection, fitness and rationality (Colligan, 2008: 24).

However, despite the occasional glances cast by mainstream academics at historical memory as a tool for critical learning about disability, questions remain with regard to what we actually want to achieve by preserving these objects, places, artefacts or papers. Do we want to preserve them just out of moral responsibility, or do we want to keep them as sources of building critical learning communities? If it really is about learning, changing and creating new communities, how do we expect to achieve such a goal? I feel wary of proposing any definitive answers to these questions due to my own bias regarding, and commitment to, disability. I hope, though, that through the second case study discussed below, one focused on leprosy, the readers will be able to formulate their own answers.

II. Memory, heritage and leprosy: the case of the leprosarium

This is how the Lord gave me, Brother Francis, the power to do penance.  When I was in sin, the sight of lepers was too bitter for me.  And the Lord himself led me among them, and I pitied and helped them.  And when I left them I discovered that what had seemed bitter to me was changed into sweetness in my soul and body. And shortly afterward I rose and left the world. (Francis of Assisi, Lettere)

As minutes pass by, visitors to the Assisi comune of Rivotorto engage in a parade of paintings, constructions and mystical legends. The space is a sort of dictionary of the Franciscan language that seems to demand both solidarity and spiritual transformation. On this journey, one wonders whether people, be it believers or not, awaken at some point to the reality that they are migrating between places where leprosy (also known as Hansen’s disease), was rampant during the 13th century. For reasons that go beyond the limits of this paper, the encounter with leprosy and its history arises every time the question about humankind, and about what Simon et al. call ‘critical teaching and learning’ on mortality, is raised. While Rivotorto has been preserved as a site of cultural heritage, this measure did not guarantee the preservation of the Franciscan teaching, for instance, about respect and non-indifference towards people affected by leprosy. Although Francis of Assisi himself ‘rose and left the world’ after embracing a ‘leper community’, the world still seems to be struggling with the ‘bitterness’ of similar diseases. Indeed, communities seem to be more comfortable to confine such human conditions to the past, as something to remember and commemorate, even though they are still very much with us.

Leprosy is a chronic infectious disease caused by the mycobacterium leprae. According to the World Health Organization, in 2012 there were 232,857 new cases reported in 125 countries. The disease has been known since ancient times. If not attended to on time, over a long period the disease can cause disfigurement and impairment. After Armauer Hansen’s discovery of the bacteria in 1873, the disease became perceived as a form of contagion, and segregation was recommended for the people affected. The arrival of effective drugs in the 1940s changed the course of the disease: in many countries patient segregation was deemed unnecessary and was hence terminated. However, there are places where the difficulties in changing national policies have been reflected in retaining patient’s segregation and isolation in maintaining leprosaria and thus in delaying the reintegration of patients into the community. The preservation of hospitals and leprosaria seems to be part of a wider conflict that has emerged between international, local and individual interests.

In his article on leprosaria in Malaysia and Singapore, Kah Seng Loh raises the question as to why the discourses of the social actors involved in the issue of leprosy struggle with the notion of memory, heritage and collective, a state of events which ends up leaving in an ambivalent position those who were or are affected by the disease. Challenging the meaning of memory linked to historical heritage, Loh introduces the concept of ‘cultures of heritage’ that ‘appropriate concepts of “historical value” and “future generations” from the international heritage discourse, but that primarily upholds the interests of the storytellers’ (2011: 241). According to him, the leprosarium has diverse meanings for the state, the social activists and the patients themselves. Those meanings also represent a diversity of interests. According to Loh,

To the state, the leprosarium is the site of a successful campaign against the disease, whose contribution to public health policy will nevertheless not prevent its demolition. To social activists campaigning against its redevelopment, the institution should be accorded a higher priority as both a heritage site and a home for the residents. For former sufferers, conserving the asylum will chiefly serve personal interests. Yet the narratives are never fully oppositional: they share similar criteria in evaluating the past, while excluding fragments deemed irrelevant to heritage. The discourses of former sufferers, as ‘cultures of heritage’, selectively appropriate the international authorised heritage discourse to articulate their own interests. (231)

Loh claims that valuing oral history as a channel for vindicating the desire and the aspiration of people affected by leprosy brings to the scene for the first time the complex and never uniform discussion on heritage and its symbolic connection with the history of communities. Behind the complexity of preserving hospitals, hospices and colonies where people affected by leprosy were incarcerated lies once again the question as to why communities and individuals want to keep them alive. Is it because of a sort of compromise with the international community? Is there any compromise with the people affected by leprosy, people whose memory would otherwise vanish, confined to those buildings? Is it a sort of the state’s mea culpa for the atrocities executed and tolerated against people affected by leprosy? What is the level of individual and community engagement in the appropriation of such legacy? Where do the development of a community, the preservation of its heritage and the individual interest intersect?

Just to cite one example, in 1867 the Colombian State founded the Lazareto (Leprosarium) of Agua de Dios. People affected by leprosy had been displaced from different areas in Colombia and other neighbour countries and exiled to this town. They had been stripped off their civil and political rights, which they only regained in 1964. The town was wired with a fence in order to prevent patients running away and a special internal (i.e., made up of patients) and external police was mobilized to control it. A sort of new state with its own currency called coscoja was created. People were given a new identity and laws were instituted by physicians. Rape, forced abortions, medical experiments and all sort of violence against the patients were practiced in this state. Nonetheless, art, music and religiosity also accompanied the life of the inhabitants of Agua de Dios, who were being cared for by nuns and priests of the Salesian Congregation. In 2011, the majority of hospices, churches, schools and public buildings and spaces – including the so-called Puente de los Suspiros (The Sighs Bridge) – were declared national historical and cultural heritage. Along the years, Agua de Dios has reinforced its image as one of the richest leprosy archives around the world thanks to the involvement of the international community. However, evoking the empathy of the local community with regard to the historical and human legacy of leprosy is still a challenge. Indeed, what those buildings, artefacts and bridges symbolise externally is still obscured by the way that leprosy is positioned in the collective imaginary of the community.

III. Remembrance and value of being

Loh concludes his article on leprosy and heritage by arguing that

[s]cholars, activists, state officials, and heritage professionals, all of whom speak on behalf of local communities about the value of the past, have to be mindful of entanglements and slippages within heritage discourses, and of the moral dichotomies that sustain them. They can provide a discursive space for a heritage practice that can accommodate complex historical experiences, diverse political imperatives and social needs, and fluid cultures of heritage. (242)

By introducing the perspective of people affected by leprosy when trying to understand why the leprosarium should or should not be preserved, Loh articulates the conflict that exists between daily individual and community life and the protection of historical heritage. The narratives of people affected by leprosy who were once institutionalised may speak a different language than the one used by the international community. In general terms, people affected by leprosy talk of the leprosarium initially as a place of violence but also as a space where, little by little, a community was built. The actual process of world-making, on a small scale, was captured within its walls. Thus, demands from patients and ex-patients for preserving those walls could easily reflect the sense of home and family those patients had embraced. They contrast here with the institutional discourse that only clamours for the preservation of historical buildings. In view of this issue, however, another problem arises – this time with regard to the spirit surrounding old hospices and hospitals where disabled people, especially those labelled mentally disabled, were forced to stay. Did they experience a concept of home or even family? Various scholars have documented this as not being the case. While activists and scholars could reinforce international policies about heritage, perhaps the rational and emotional identification of disabled people and people affected by leprosy with such heritage should extend more to questioning and ‘reworking notions of community, embodiment, identity and relationship’, as Simon et al. put it.

Indeed, examples such as Agua de Dios and Rwanda throw a new light on the questions about our responsibility with regard to how we read and listen to the past as well as to the present. As Simon et al. argue,

How one responds in the face of the demand to read, view and listen counts for something, indeed counts for a great deal. Thus, our overriding question: what practices of response to the testamentary demand for non-indifference might enable an opening into learning? Learning here is understood not solely in terms of acquisition of previously unheard of, unknown facts and stories, but as well an opening of the present in which identities and identifications, the frames of certitude that ground our understandings of existence, and one’s responsibilities to history are displaced and rethought.

To conclude, I would like to echo the words of many disabled people and people affected by leprosy I have met in my work, both within institutions and outside them. When asked about reasons to preserve buildings and artefacts, or even to think about opening a museum, they keep insisting on the importance of creating communities of change. ‘On such terms remembrance enacts possibilities for an ethical learning that impels us into a confrontation and reckoning not only with stories of the past but also with ourselves as we are (historically, existentially, socially) in the present’ (Simon et al.)


S. (2008) ‘Genocide and Cultures of the Body in Nazi Germany and
Rwanda, 1994: Implications for Anthropology and Disability Studies’, The Mind’s Eye: A Liberal Arts Journal: 22-32.

Frank, A. (1995) The Wounded Storyteller: Body, Illness and Ethics. Chicago: University of Chicago Press.

Loh, Kah Seng (2011) ‘“No more road to walk”: Cultures of Heritage and Leprosariums in Singapore and Malaysia’, International Journal of Heritage Studies, 17:3: 230-44.

Masakhwe, P. (2004) ‘The Disabled and the Rwanda Genocide: The Untold Story’, Disability World, 23.

Simon, R. et al. (2002) ‘Remembrance as Praxis and the Ethics of the Inter-human’, Culture Machine, vol. 4.

World Health Organization (2014) Factsheet No. 101, January.

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