6. Reflection on the rehabilitation of civilian victims of war and beyond
The experiences shared by MSF staff and their patients advances our understanding of the rehabilitation process. But before we delve into this, it is essential to review the limitations of this research and to reflect on how to interpret the results. During the research a number of limitations emerged, including our sampling of participants. In addition, my role as researcher working in an exceptional socio-political context deserves attention, as does my emotional response.
In this discussion we debate the need for multiple rehabilitation components. We start by reflecting on the relationship between healthcare providers and patients in two predominant theoretical models of disability, namely medical and social. With the change in attitude towards disability over time, we note how attitudes in the humanitarian field have also transformed. Of course, we focus on victims of war and their need for social recovery – an essential part of the rehabilitation process in past centuries but mostly forgotten in recent decades. And we pay special attention to the care of civilian victims of armed conflict. We discuss symbolic healing, too, the last and essential component of rehabilitation for victims of war. The chapter concludes with an assessment of the potential for implementing our findings in the broader context of disability care, and we close with proposed avenues for further research.
Research constraints and limitations
Limitations of sampling methods
To form a research cohort among RSP staff so we could study their perceptions of patients, we relied on self-selection and voluntary participation. Views of staff members who may have been more critical, or of those with a less outgoing personality, may therefore be missing. A large number of participants (ninety-nine out of a total of 209 members of staff) was included in the study sample to minimize this bias.
Not being able to include Yemeni patients in the study when examining patient views was certainly a major constraint. As explored in Chapter 2, the perceptions of MSF staff towards Yemeni patients were strongly negative, and this could have potential consequences in delivery of care for this group. In addition, the potential for fieldwork in Yemen was thoroughly discussed. The war was raging in Yemen at the time research was conducted, and that situation strictly compromised access to humanitarian aid for the affected populations. Meanwhile, MSF activity in Yemen was based on a sensitive agreement between MSF and political actors. The idea that I do follow-up interviews in Yemen was vetoed as potentially having negative consequences. On balance, suspicion towards a researcher could have endangered MSF’s negotiations. My mobility in Yemen would have been severely restricted, particularly in areas of active fighting, where the wounded originate. Furthermore, moving participants to an interview location could have put them in life-threatening situations. Considering all this, MSF concluded that it would not be ethical or even sensible to conduct interviews in Yemen. Phone interviews were considered but ruled out both because of the sensitivity of discussion topics and the need for translation over the phone, which could create the conditions for bias in data collection.
The selection of patient participants was based on those who had completed the programme. This was done to ensure that participants had taken part in all the treatment activities and that they had, from a programme perspective, received the maximum care currently available. The views of those who did not complete the programme due to their own initiative or because they returned home in the middle of treatment may well have been different and more critical than the ones I documented.
Interactions with participants
A critical evaluation of the researcher’s role and the impact the researcher may have on the research and its outcomes is referred to as reflexivity (Patton, 2002; Berger, 2015). It allows one to identify personal characteristics that could potentially influence data collection, analysis, or interpretation. I used the lens of reflexivity to examine my interactions with the participants.
As a foreigner, I was given the label “expat,” particularly by the staff from Arab countries, who often used a vocabulary of “us” and “them,” meaning expats, when discussing issues in the hospital. Being from the former Yugoslavia appeared important, however, as I was perceived as a person with an understanding of the issues of war and related personal struggles. Iraqi members of staff in particular could make a connection with the former Yugoslavia due to past political and military collaboration. This put me in a slightly more favourable position and fostered my social relations.
Lack of knowledge of Arabic certainly created blind spots in my observations. I was unable to understand the side chats in the hospital corridors and meetings. Despite most members of staff speaking English, use of Arabic was quite common, even in the presence of non-Arabic speakers, particularly when an attempt was made to keep an issue away from the expats. I learned basic Arabic phrases of politeness and personal introduction, and when I used them as an icebreaker with patients and staff, it was greatly appreciated.
I developed informal relationships with my colleagues at the MSF hospital, which assisted in my understanding of their relationships with patients, their personal and professional struggles during their working day, and their attitudes towards their professional roles. At the same time, informal interactions presented the danger that my capacity as an observer would dissolve. Realizing this, my CRASH colleagues often reminded me of my role, and I made a consistent effort to keep my observational lens in focus.
Working in a unique socio-political context
Conducting interviews in a sensitive socio-political environment was challenging. In the field, some former MSF patients met us with trepidation, often nervous and sometimes suspicious. Despite a clear explanation of the research objectives and procedures, I was frequently asked if I was working as a journalist. Taking pictures of participants was completely out of the question. Many expressed a fear of being identified, particularly when sharing political views, which was frequently done without any enquiry on my part. Syrian participants related concerns about family members who were still in Syria and thought that any political affiliation they expressed could potentially affect their loved ones.
Iraqi participants communicated their political affiliations in a more settled way. One participant communicated his fondness for the “old regime” by naming one of the hospital surgeons Saddam Hussein and comparing him accordingly, stating, “When he left [the surgeon and Saddam Hussein], everything collapsed.” Another patient said that his son could not access education or work opportunities due to “the political climate, which is not favourable to [Sunnis] at the moment.” This was in contrast to his son, who claimed that he could not work due to difficulties with his leg, which was “still stiff in a knee area.” Yet another participant reported working in the military in the “old regime” and then commented how he has “lost everything: dignity, job, pension, and housing” due to the change of political climate. Another talked about her husband, who was imprisoned under Saddam Hussein’s regime, and commented that they still do not feel secure.
There were other, carefully chosen ways participants declared their background. One of them expressed his surprise at the doctor who treated him “well” in Iraq. According to my interpreter, the doctor’s name he provided was a typical Shia clan name: “He was from another tribe, but he was very good [to me]; he treated me well.”
It was important to understand such notions, and particularly to understand a participant’s fears at the beginning of an interview. The process sometimes called for a lot of reassurance from our side. One of the patients in Baghdad, for instance, refused to allow us to visit his home, stating that it would be unsafe for him. He expressed concerns while talking to us and at one point asked if the Iraqi government had given us permission to do these interviews. At the end of the interview, he asked if the information he gave could in any way compromise his security. And then he wondered if he had said anything “wrongly” – that is, in a way that could be interpreted as being against the current government. Another participant, after inviting us to her house, wanted to confirm that “we really worked for MSF.” We had to show her our work IDs to prove we were who we said we were.
Another example of the sensitivity of our interview environment emerged when we were arranging reimbursement for the travel costs for one of the participants in Baghdad. The hospital secretary asked the location of the participant’s residence in order to pay the appropriate amount. The participant’s husband was offended, saying that they “came to participate out of the gratitude to MSF and don’t need any money.” He continued: “You don’t know how much we suffered due to sectarian violence. Our house was burned.” We managed to calm him, and he accepted the reimbursement, but it become clear that even a residency location, which would be an indication of a Shia or Sunni neighbourhood, was considered a sensitive topic.
My own emotional world
The interview process was emotionally charged not only for the participants. Members of my research team and I also experienced a range of emotions. I am certain that my emotional responses and my previous experience in a war setting influenced my outlook on the patients’ narratives.
Interviews with these participants were certainly the most challenging I have conducted in my career as a field researcher. Among the participants were victims of torture, parents whose children had died as a result of war violence, those who had witnessed mass killings, and many whose life had been at risk on numerous occasions. Witnessing the financial, social, and/or legal hardships they faced in the present was also profoundly moving.
“It feels like walking over a mine field.” This was a thought that ran through my mind daily. Even the most general question could cause a participant to burst into tears. The emotional manifestations that patients exhibited ranged from complete memory block, through a frozen state where no visual sign of emotion could be detected, to extensive crying throughout the visit. The unpredictability of these responses made every day feel like a new beginning. The sense that there was nothing I could do to prepare for any specific interview was at times overwhelming.
Occasionally I experienced feelings of guilt, questioning if I had said the right thing and if there was anything else I could have said or done to comfort the person in the interview. After the interviews, I usually experienced a feeling of deep sorrow which only slowly lifted later in the day. The feeling of helplessness when reflecting on the absurdity of war and on the extent of human suffering lasted for a long time. During the research I was not able to follow the news from the Middle East without experiencing emotional distress.
Sometimes there were moments when I questioned if participants’ mental health was compromised to the point that they might react aggressively to my questions. This was particularly true in Iraq, where participants often expressed their anger. On one occasion, for instance, we met a participant in Baghdad who made my interpreter and myself feel uneasy, particularly at the beginning of the interview. As soon as he entered the room his behaviour seemed neurotic: trembling hands, fast, sudden movements, and a distracted expression on his face. In addition, his responses were not always logical. He decided to show us his ID, which, according to him, “authorized him to carry weapons.” While interacting with him, I remember hoping that he had been properly body-searched at the entrance to the hospital. As the interview went on, however, the participant calmed down and it became obvious that he was deeply troubled by the life he was living. This particular interview reinforced the feeling of daily unpredictability in our work.
There were times when we got caught in complex interactions with our participants. During one of the home visits, which we conducted at the beginning of March 2018, we met a young man from Eastern Ghouta. When we entered his apartment in Amman, the TV was on in the comfortable-looking living room. The sound was switched off, but the images continued. They were showing in real time buildings collapsing in the already destroyed neighbourhood of Eastern Ghouta. There were images of men carrying injured bodies, covered in blood. The participant had a desperate expression on his face and told us that his family members were right there, right then. I checked if he was still willing and able to answer to my questions, to which he eagerly agreed. During our interview his eyes would fix on the TV screen and he would pause. After a while he changed the TV channel to a children’s show and his mood seemed to lift. He became more energetic describing his current living situation, and he was “thanking God that things turned out this way for me, my wife, and my child, who are with me in Jordan.” When we approached the end of the visit, he wanted us to stay longer. We made numerous attempts to indicate that we were ready to leave, but our host kept on distracting us and pleading with us to stay longer. It seemed that our presence created a barrier between the horrible reality he was facing that day and relief from it. We finally left, but I carried a heavy feeling with me for the rest of the day.
My brief personal experience with the Yugoslav war undoubtedly influenced some of the reflections in this research. I first noticed this when I had difficulty reading articles related to war if they described the former Yugoslav conflict. This sensation of fear associated with my teenage experiences was something I had been unaware of until it emerged during my first visit to Baghdad. I experienced a sudden sense of fear when hearing low-flying military helicopters above us and memories of bombing alarms suddenly reappeared along with the sense of insecurity and confusion attached to that specific period of my childhood. These personal reference points gave me insight when talking to participants, not only in the sense of a shared experience, but also because I could understand the social and political complexity that characterizes countries at war.
In short, my interpretations of the patients’ narratives was influenced by my own subjective views, and I cannot claim that they are completely objective. In preparation for the interviews, I followed professional guidelines to reduce the impact of subjectivity. This meant primarily that I had to be very aware of my emotional state. My conversations with the interpreters proved extremely useful and enriched my own thoughts and observations. My ability to gain an emotional distance improved during the course of analysing the research and throughout the writing of this book.
A number of social scientists report similar experiences and feelings during participant observations in emotionally charged research environments (Fox, 2017; Paul, 1953). Prolonged engagement with participants, triangulation of research methods, and debriefing sessions with the research team helped me check my own influence on the research process. Still, working as a researcher in a war context holds undeniable complexities.
We are now ready to proceed with the broader reflection on the rehabilitation process, not only of victims of war but also of others who live with disability.
Reflection on the multiple rehabilitation components
This book explores new ways to support and rehabilitate civilian victims of war. One of the core concerns raised at the opening of the book was injured non-combatants’ severely limited access to medical treatment. This reflects the overall neglect they experience as members of society. The lack of focus on war-injured civilians is also obvious in the literature. Most literature that examines the rehabilitation of the war-injured focuses on war veterans rather than on injured non-combatants. The vast majority of titles on this topic take a state perspective (Carter and Kidder, 2015; Auerbach et al., 2013; Pupavac and Pupavac, 2012) or a purely medical/surgical perspective (Taylor et al., 2012; Foote et al., 2015; Der-Martirosian et al., 2013). War veterans are also a focus of the literature that studies post-war social reintegration, stigmatization, and mental-health topics (MacLean and Kleykamp, 2014; Vermetten et al., 2007; Huskey, 2015; Gade and Wilkins, 2013; Hasanović
Throughout Reconstructing Lives, I have examined different sets of relationships: between the disabled body and the sense of self, between the patient and their healthcare providers, and between the war victim and society. All these relationships contribute to the fragile process of healing – the main aim of patients entering MSF’s RSP. It was apparent that the patients’ aim was not only to fix their injured bodies but to rebuild all aspects of their existence: their personal, social, and moral identities, their economic power, and their sense of dignity. Symbolic meanings attached to their past experiences and the way they see their bodies today also play an important part in the reconstruction of their lives. This resonates with Behrouzan’s work (2015) on the psycho-politics of wellbeing and mental health in the Middle East. Behrouzan acknowledges that after experiencing violence individuals mobilize different means of healing – for example, cultural, historical, clinical, and social.
In contrast, the healthcare providers at the MSF hospital – one of the leading programmes in the world to provide reconstructive care for civilian victims of war – focus predominantly on patients’ medical treatment. As we have seen, this often creates tension between the staff and the patients. In my view, this issue stretches beyond questions of power and victimization explored by other authors (Mosse, 2004; Mosse and Kruckenberg, 2017; Farmer, 2001; 2006). It speaks to the subtle set of relationships between all actors that needs to be considered if the process of rehabilitation is to become patient-centred. It is both theoretical and practical. Here, I explore these notions and briefly touch on what has influenced our predominant understanding of disability and rehabilitation, particularly the ideas associated with war. The limitations of clinical rehabilitation and the need to embrace other forms of healing are also discussed.
Theoretical models of disability: a tension between medical and social
To understand the relationship between patients and their healthcare providers it is useful to review the theoretical models that deal with disability. These models differ from one another mainly in the way they perceive disability, whether they see it as an individual or a social phenomenon. The medical model, for instance, views disability as an individual pathology, commonly perceiving it as a personal tragedy (Goodley, 2011) and using medical terminology to describe it. In contrast, the social model describes disability as a purely social phenomenon. Here, the emphasis is placed on how the disabled person is limited in their opportunity to take part in the normal life of the community due to the physical and conceptual barriers imposed by society. Hence, according to this model, society determines who is disabled and who is not.
There are other models worth mentioning, such as the moral model, the charity model, and the minority model. The moral model diverts responsibility from the disabled to other people (for instance, parents for congenital deformities) or supernatural forces (God, destiny, or karma). The charity model perceives people with disabilities as victims who deserve pity. And the minority model emphasizes the discrimination suffered by the disabled and deals with their struggle for rights alongside other minority groups (Retief and Letšosa, 2018).
In the MSF hospital we were able to understand the nuances of all these models. Two main models, however, namely the medical and social models, were particularly useful in recognizing the internal tensions experienced by the staff as well as the tensions between staff and patients. For instance, in keeping with the medical model, MSF staff predominantly focused on providing medical treatment for deformed bodies (for example, improving measurable range-of-motion in injured limbs). Patients, on the other hand, understood the rehabilitation process as inseparable from their social recovery, corresponding more closely with the social model and social responsibility – that is, social responsibility is seen as part of the responsibility of the medical provider (for example, “smooth my skin, improve the appearance of my face so that I appear more normal”). It is not surprising therefore that tension and misunderstanding emerge between the parties, both of which believe they are simply practising their rights and responsibilities. Underscoring such insights and promoting alternative ways to think about rehabilitation can move the relationship in a more satisfactory direction.
Young promotes an alternative approach and describes two techniques in rehabilitation: “hard” and “soft” (1996: 678). Similar to the care received at RSP, hard rehabilitation involves medical treatments including drugs, physiotherapy, occupational therapy, and access to prosthetic appliances. Soft rehabilitation, in contrast, delivers counselling, encouragement, listening, and education. Young (1996) argues that some patients require only soft rehabilitation but insists that balancing soft and hard delivers the best outcome. If we examine treatment at the RSP, hard rehabilitation is considered medically justified, while soft rehabilitation, though greatly valued by the patients, is relegated to a supporting role.
In sum, a major alteration in the way disability is perceived in the RSP would redefine the responsibilities in the rehabilitation process shared between medical providers and their patients. The concept of disability itself has been evolving only slowly over time, however, and this explains why achieving conceptual change is so challenging.
Disabled body in the eyes of society
History illuminates some of the deeply embedded concepts of disability that, to a certain extent, still drive attitudes towards disability today, including in the humanitarian field.
There is some association between disability, disfigurement, and stigmatization as early as the late seventeenth and early eighteenth centuries. It has been argued by Ville et al. (2016) that the Enlightenment, the philosophical and intellectual movement that shaped ideas in Europe at the time, drove the contemporary concept of disability. The Enlightenment brought about a drastic shift in the way the body was perceived. The focus was on material and empirical knowledge, which influenced perceptions of the body as a biological entity with measurable and modifiable components. The medical discourse moved towards seeking biological causes for physical and mental variations. Along with these notions, the idea of average, normal, and desirable body shape and function emerged.
Anything that deviated from the norm was labelled abnormal and undesirable. This belief manifested in so-called “freak shows,” shows in which “freaks” – people who lived with smaller, larger, or deformed parts of the body due to congenital deformities or diseases – were exhibited publicly as entertainment. The disabled were frequently abandoned as children or sold to such shows by their parents. The shows lured their audiences with advertisements such as “the legless wonder, the lobster boy, big foot girl, elephant man, four-legged girl,” indicating the types of deformity suffered and available for view (Fordham, 2007).
Freak shows were popular in England and the US from the seventeenth to the nineteenth centuries, when scientific explanations for the mutations emerged and the shows were banned. The social view changed from “freaks” entertaining the public’s curiosity about “how nature went wrong” to the disabled becoming objects of pity (Durbach, 2009).
Some authors (Ville et al., 2016) have argued that the centuries-long reinforcement of norms and the grotesque abuse of those who did not fit them left deep negative attitudes towards disability. Others, like Oaten et al. (2011), use an evolutionary approach and argue that apparent signs of disease trigger disgust and avoidance in order to prevent the spread of infection. Nevertheless, both hypotheses promote the predominant tendency among humans to feel threatened by and thus to avoid individuals who appear different or sick, even if in reality they are not.
A major transformation in these notions occurred in the 1980s and 1990s through disability-related activism (Ville et al., 2016). The ideological concept known as disability studies led this activism, which rebelled against a social definition of “normal” and against any marginalization of those who did not fit it. The understanding of disability shifted from the “individual” to the “social,” and from “natural” to “socially constructed” (Goodley, 2011). Disability studies distinguished between “impairment” – that is, functional limitations – of the individual caused by physical, mental, or sensory deficit and the social construct that leads to oppression through the restriction of activities. Disability studies emphasized the socially imposed pressure on people living with impairment, noting that they were infantilized and perceived as helpless and asexual.
This activism brought significant changes in social attitudes as well as in legislation related to the rights of people living with impairments. Today the WHO describes disability as a “complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives” (WHO, n.d.). As such, it is generally acknowledged that environmental and social barriers need to be reduced to facilitate quality of life for people who live with disabilities.
Coping with a disabled self in the context of war
In the context of war, environmental and social barriers become more pronounced at the same time as the number of disabled people overwhelms society. One might expect that the disabled body would become the new normal and the social glance towards it would neutralize. According to my observations, this is too often not the case. My participants reported three levels of stigma: the first related to the appearance of their bodies, the second to assumptions about their having done something “wrong” – hence, to their moral self – and the third to internal integration of negative prejudices – that is, self-stigmatization. MSF patients consistently advocated for support in managing all these stigmas.
Social norms have driven the acceptance or marginalization of different bodily forms and functions. This does not change in the context of war. Those participants whose appearance was affected in a way that all could see were judged according to predominant ideas of beauty and gender norms. In addition, they were consistently asked whether they were victims or perpetrators. Those who may have been in combat but who possess no visual manifestation of injury are better off socially than those civilians with obvious visual markings who did not engage in combat. The non-combatants live under social suspicion that they were involved in war violence. Hence the “moral self,” rather than the body, is what is being critically evaluated. But let us not get into the victim/perpetrator dichotomy. Other authors, such as Basic (2018) in the context of former Yugoslavia, and Bradol and Le Pape (2017) in the context of Rwanda, have already provided a profound discussion on how this dichotomy is unjustified in the reality of war violence. What is significant in this debate is that the perceived social glance plays an important role in how the war-injured feel about their place in society. In other words, stigma in war and stigma after war may influence an individual’s survival and wellbeing.
Some aspects of Goffman’s theory of stigmatization (1986), an influential work in the field of disability, resonated with the experience of the war victims I encountered. Goffman discusses how stigmatization occurs in contact with others – for example, “normals” – and how it influences one’s perception of one’s own identity. He emphasizes the constant need for the stigmatized to manage social interactions, and he lists a number of strategies. One of them is the stigmatized person’s attempt to fit in with expectations. He writes: “I also learned that the cripple must be careful not to act differently from what people expect him to do. Above all they expect the cripple to be crippled; to be disabled and helpless; to be inferior to themselves, and they will become suspicious and insecure if the cripple falls short of these expectations. It is rather strange, but the cripple has to play the part of the cripple” (Goffman, 1986: 110). This illuminates the predominant notion at the MSF hospital that patients are “victims,” and it explains the tensions that occurred when individuals did not act “helpless” enough, as, for example, when they questioned medical decisions. Thus, for patients at the MSF hospital, the common strategy was to adopt the position of the perfect victim and for their relationship with the care providers to appear “positive.” However, the commonly established patronizing–dependent relationship between medical staff and their patients prevents the latter from becoming empowered during rehabilitation and hampers the development of self-realization in the disabled individual.
Another relevant point in Goffman is how stigma relates to public rather than private life. My participants reported that any stigma was completely absent when they were in the intimate circle of family members who did not consider their deformed bodies off-putting. As Goffman notes, uncomfortable situations occur in public, and particularly when strangers already know about the social identity of the stigmatized, who, in return, do not know anything about them. “He [the stigmatized who decides not to remove himself from the social contacts] can voluntarily disclose himself, thereby radically transforming himself from an individual with information to manage to that of an individual with uneasy social situations to manage” (Goffman, 1986: 100). This type of situation led my participants either to hide their injuries or transform the meanings attached to them into something socially acceptable – for example, by ascribing the injury to an act of heroism.
Goffman notes that when “normals” and the stigmatized enter one another’s immediate presence, the causes and effects of stigma are confronted by both sides. The disabled can never be sure what the attitude of the new acquaintance will be. Will it be dismissive or accepting? The “normal” is faced with feelings of unease triggered by contact with the disabled. Reports by my participants and examples from the literature describe how facial disfigurement especially produces an emotional response such as fear, disgust, or contempt in the observer. There is already a predisposition to such reactions embedded in the social norms surrounding the concepts of beauty and perfect function (Harris, 2019).
Uncertainty about the reaction of others causes a great deal of self-consciousness and anxiety. This uncertainty will lessen, however, as the individual lives in a community for years and develops what Goffman calls a “biography”: “a well-rounded… personal identification… in others’ minds” (Goffman, 1986: 78). When the war-injured leave their communities and spend prolonged periods in rehabilitation, removed from their usual social circles, discontinuity of the “biography” occurs. New opportunities emerge for them to manage their background information or how they are going to be known in their new social circles. The disabled person experiences a sense of normalization in the hospital environment which facilitates development of a new social and personal identity. MSF patients seem to take advantage of this opportunity to explore who they were prior to the injury and who they will be after treatment and rehabilitation.
Lastly, if stigmatization does not occur externally, it may still be imposed from within. It was apparent that for some of my participants, being perceived as deviant in the eyes of others due to facial scars was sufficient to block them from participating in social life. In contrast with the public stigma arising as a negative stereotype that society places on an individual, self-stigmatization is the process of internalization of negative judgments (Corrigan and Watson, 2002). In the literature, self-stigmatization is mainly explored as a mental-health question (Corrigan and Watson, 2002; Corrigan and Rao, 2012), in connection with HIV/AIDS (Miller et al., 2011; Ajala, 2012), or in connection with addiction research (Frischknecht et al., 2011). To my knowledge, it has hardly been explored in the context of war victims. Shih (2004) notes that traditional work on stigma has focused predominantly on stigma’s negative impact on the individual. The participants in this study, by contrast, seemed to flourish despite adversity, often applying strategies to ward off the negative consequences of stigma. Some of the strategies they used were in line with the management of stigma reported in the literature. Shih (2004), for instance, reports on compensation, strategic interpretation of the social environment, and the creation of multiple identities to combat self-stigmatization.
In employing the compensation strategy, stigmatized individuals become more assertive and persistent to achieve their goals. They build up skills that help them fit in, and they refine social interactions (Shih, 2004). At the MSF hospital there were daily examples of persistence in often painful moments of rehabilitation.
In strategically interpreting their social environment, individuals manipulate their perception of that environment to protect their sense of self-worth. For instance, they increase their sense of self-efficacy by comparing themselves to a group with similar challenges rather than to a group that has no disfigurement/disability. When faced with failure, these individuals preserve their self-esteem by attributing disappointments to prejudice rather than to personal causes, although they can also resist seeing themselves as victims and deny or minimize prejudices. It was apparent from my participants’ point of view that “being among similar” was healing in its own terms.
The last strategy – the use of multiple identities – shifts the focus away from a single way of looking at oneself. Such switching of identities has many psychosocial benefits and allows the individual to decide which identity to use in any given social context. My participants partook of multiple identities in diverse situations: heroes, victims, mothers, husbands, survivors, professionals, optimists, Muslims… the list goes on.
The disabled can also be coached to manage self-stigma. Lucksted et al. (2011) describe a pilot project in which they demonstrated techniques that effectively reduced self-internalized public stigma. They utilized educational sessions to explore mental-health issues, they imparted skills that the stigmatized could use to respond to stigma in public settings, and they guided their participants to solidify relationships with family and friends.
In sum, despite steep increases in disability as a result of war violence, solving the problem of stigma related to social interactions between disabled and “normal” people has not advanced rapidly enough. People living with impairments in a war context are constantly threatened with being perceived negatively in public life. This happens because of their appearance, because they are suspected of involvement in war violence, and/or because they impose a stigma upon themselves. During the rehabilitation process a window of opportunity opens that can facilitate social rehabilitation, a prospect which has implications for the improvement of the wellbeing of the war-injured. Regrettably, this understanding has not been fully incorporated into the MSF RSP.
When was social rehabilitation forgotten?
Social rehabilitation of war-injured persons is far from a novel approach. Pioneering efforts in rehabilitation were launched in the post-First World War era across Europe and the US when rehabilitation centres opened to assist the large number of war invalids. No less than 120,000 disabled soldiers were treated in US rehabilitation centres at that time. The injured represented an alarming number of young, previously healthy men at the height of their physical and professional development (Stagni et al., 2015). The large number of disabled war veterans who were eligible for financial compensation posed a considerable financial challenge to society, and this led to a tendency to return them as swiftly as possible to the labour force. In turn, pressure was placed on the medical profession to make decisive contributions so that veterans could be integrated back into civilian life.
Among the chief commitments was the development of orthopaedic prosthetics (Perry, 2014). The Laboratory for Military Prosthesis and Occupational Labour in the north of France, for instance, headed by the French scientist Jules Amar, based its work on Amar’s understanding of the body as a motor and body parts as mechanical appendages, both amendable and optimizable (Verstraete and Herman, 2016). This notion led to the development of prostheses that were individualized, and training that was designed so that each patient could optimize their performance. In Amar’s opinion, the disabled body was the principal site of a person’s productive value and functionally disabled solders were perceived as a beneficial part of society. As such, the boundary between able and disabled was blurred and the result was a shared sense of community.
Similarly, in Italy, at the Istituto Ortopedico Rizzoli, one of the most renowned hospitals for the treatment of orthopaedic deformities, the rehabilitation programme consisted of physiotherapy, curative workshops, and vocational therapy. These new perspectives on physical medicine and rehabilitation established a pioneering and multifaceted approach to rehabilitation that involved functional recovery as well as the recovery of social roles and participation in social life (Stagni et al., 2015). The same efforts were made in other rehabilitation centres across Europe, the US, and Canada, and social integration of war veterans through gainful employment was considered a standard part of medical rehabilitation. The aim was to fully restore to severely wounded soldiers the use of their bodies and their ability to be economically self-sufficient. The First World War also saw comprehensive efforts at the restoration of normalcy to the war-injured. A report from 1918 shows that it wasn’t only war veterans who had access to such support: sometimes war-injured civilians benefited too (Provision for Disabled Soldiers and Civilians, 1918). Doctors and surgeons led public discourse on disability, norms, and social performance (Wolters, 2015). They often joined the war-affected – particularly leg and arm amputees who became synonymous with disability – to advocate for social rights.
After the Second World War, work in plastic surgery broke new ground (Geomelas at al., 2011). Sir Archibald McIndoe, a pioneer in the field of plastic surgery, treated veterans, developing novel techniques, particularly for the reconstruction of faces damaged by burns. During this period, medical personnel were aware of the need to work not only on patients’ bodies; they knew they must prepare them for a painful reintegration into their communities. McIndoe adopted mental, social, and physical approaches in his treatment of patients. He formed what they jokingly called The Guinea Pig Club, for patients with burn injuries. Photographs from the clubs’ meetings portray men with obviously deformed faces, wearing suits, smoking cigars, and smiling over dinner toasts in what perhaps would have been considered a higher social setting. McIndoe set up these clubs to rehabilitate and protect the dignity of his patients and help them find their place again in society. He was a strong advocate for his patients and influenced society to better reintegrate the war-wounded.
In the US, it was acknowledged that war veterans from lower economic backgrounds needed a higher social standing, but, due to systemic racial discrimination, the vast majority of African Americans were excluded. Getting a leg-up on the class ladder was achieved for whites through their newly granted access to higher education in the GI Bill. This contributed to the new well-educated white middle class that emerged from the war.
Recent examples confirm the benefits of reintegrating the war-injured into society. A study of Bosnian war veterans with amputations who engaged in a scuba-diving rehabilitation programme originally aimed to assess their physical ability to participate in the sport. Results showed that scuba diving was not only a feasible activity for amputees but that it increased participants’ perception of social support, a fact linked perhaps to the sport’s association with higher socio-economic status (Aganović, 2019).
Thus, modern concepts of rehabilitation of the war-injured through social participation were in place to a limited extent after the First World War, and by the Second World War they were quite well developed. In both periods, medical doctors and surgeons were on the frontline as advocates. Medical treatment, occupational therapy, and social reintegration were seen as medical duties in the effort to rehabilitate those with war related disabilities.
After the First World War, the focus was on rehabilitating the injured to function in the industrial boom of the time. After the Second World War, along with emerging class stratification in Europe and the US, there was a push to improve the class status of the rehabilitated.
Both models prepared the disabled to re-enter society as valued members. By focusing primarily on the functional aspects of rehabilitation, the RSP has missed out on the social component – long considered a part of rehabilitation. A number of questions arise: why have aspects of social rehabilitation been forgotten? Does the humanitarian field fully understand the social needs of victims of war? Is there enough flexibility built into rehabilitation programmes to allow them to adjust to the rapidly changing social norms on disability in war-torn communities?
Another aspect of rehabilitation that my participants raised was that of symbolic healing. There is symbolic violence in war: the violation of cultural symbols, social taboos, and the social structures that establish rules and mechanisms for settling disputes and keeping peace in ordinary times. According to Shepler (2016), who examined symbolic violence in Sierra Leone, the ultimate goal of war is to destroy collective methods for coping with stress. In Sierra Leone this was done through limb amputation, the parading of severed heads on sticks, rape, body mutilation, and stories of cannibalistic acts. In the recent wars in the Middle East, ISIS has used numerous means of symbolic violence: looting and destroying cultural and religious artefacts, and videotaping and broadcasting violent propaganda, including beheadings (Pauwels, 2016; Patruss, 2016). It is not surprising therefore that war victims aspire to symbolic healing as a (re)confirmation of their individual and collective values.
Omar Dewachi is one of the few researchers who explores war injuries beyond medical discourse (Dewachi, 2015). Describing war injuries as social wounds that incorporate local histories of violence, he writes about displaced Iraqis in Lebanon in the wake of the US occupation of Iraq, pointing out how wounds in a new setting become embedded in the new social structure through various social interactions and meanings. According to Dewachi, wounds either “bring people together or keep them apart.” In the RSP, my participants confirmed that the symbolic meaning they attached to their injuries served as reminders of suffering, which “kept them apart,” or as currency in a social network that “brought them together” with others who shared a destiny. Symbolic meaning holds the potential for both: symbolic violence and symbolic healing.
In previous wars, social rituals, the use of symbolic language, and symbols that reconfirm community values and ethics have been utilized as different aspects of symbolic healing. Collective re-burials of those who were killed and buried far from home during war is one such example (Zaremba, 2015; Ferrándiz, 2006). Such burials are a way to respect the victims and express grief about what was collectively lost in war. Re-burials in some settings hold yet another set of meanings. Anthropological research in Angola and Mozambique describes how war trauma is linked to the power and rage of dead spirits who were not properly buried during the war and who therefore continue to contribute to the community’s misfortune. Re-burying them symbolically puts the spirits and the community at peace (Green and Honwana, 1999).
Purification rituals for those who participated in or witnessed killings are another example. They can cleanse the affected person and reintegrate them into their community. Shepler (2016) writes of how the reintegration of child soldiers in Sierra Leone was drawn from two different models: the Western model, based on children’s rights and child-protective practices, and the Sierra Leonean model, centred on traditions of child labour, fosterage, and training. In addition, local models for dealing with child soldiers were tied to beliefs in ancestral healing powers and the importance of family and community involvement. Western therapeutic techniques established to treat PTSD among child soldiers in Sierra Leone all missed the local or country-intrinsic aspects. A contrasting example is the successful reintegration of boys who had been child soldiers in Uganda (Bower, 2008). The boys, after a rehabilitation period, returned to their home villages and underwent cleansing rituals that allowed their communities to “forgive” them. After this collective ritual, the child soldiers who were not physically injured but who carried both social stigma and emotional wounds became part of their communities again.
Another example of symbolic healing, which has also been used in conflict zones, is the symbolic language of poetry (Olszewska, 2007) and theatre performance (Dinesh, 2016; Brecht, 1964; Boal, 1985). Such language allows for political and social messages to be aired without the threat of censorship. The emotions and interpretations evoked in the spectators and in the society at large carry the potential of symbolic healing.
In summary, aspects of symbolic healing through collective traditions, symbols, and rituals are too often neglected in the rehabilitation of war victims. In medical institutions that assist victims of war, subtle means of recovery are often missed too, particularly if the medical model of rehabilitation predominates. It is the subtle means, however, that pervade the daily life of war victims. While there is certainly a limit on the symbolic healing a rehabilitation centre can incorporate into its programmes, in collaboration with patients, healthcare providers could embrace at least some aspects of symbolic healing as part of their medical decisions.
MSF already has some experience with such negotiations. In previous MSF surgical programmes, it was noted that tapping into the local understanding of the body could influence the level of acceptance of certain medical procedures. In 1991 in Somalia, for instance, MSF staff faced numerous challenges due to the low acceptance of amputations. Patients would accept and perhaps succumb to a life-threatening infection rather than lose a limb. This was linked to their idea of body integrity, which was sacred. Amputations were much more easily accepted by the population of Khmer refugee camps in Thailand in 1992– 1993, by contrast. Yet another observation from the surgical programme in Sierra Leone in 1999, showed that patients preferred amputation rather than reconstructive surgery performed in the hope of improving their grip if the surgery did not improve the appearance of their hands (Jean-Hervé Bradol, personal communication, June 2020). Hence, the conflict between medical and symbolic meanings of the body varies greatly depending on the context – all of which points to the need for the profound involvement of patients in decisions about their bodies and lives.
Military actions have always targeted the human body with the aim of destroying the social body. The sense of social identity is violated not only through killing, torture, mutilation, rape, and displacement, but also through the destruction of symbols valuable to the society under attack. Reconstruction of the lives of war victims is therefore a complex process in which all aspects of treatment and healing must be taken into consideration.
Due to the achievements of disability activists, disability today is understood as both physical and social phenomena. Despite this, humanitarian actors such as MSF still predominantly follow the medical model. Compared to the rehabilitation efforts for the war-injured in past centuries, we have many sophisticated technological advances. Nevertheless, it may be true that we have less understanding of the social and emotional needs of the patients. MSF has begun to acknowledge this: it has recognized that tension exists between the medical and the social, and now promotes a more inclusive delivery of care; and it has declared its intention to adopt a patient-centred approach as one of its main strategies. Operational change, however, will require some conceptual, as well as practical, shifts in the programme.
To provide full medical and psychological support for patients at the RSP or other facilities for the war-injured it is essential to base programmes on detailed patient histories, including reports of traumatic life events and the specifics of previous treatment or lack thereof. The emotional impact that devastating events have had on patients and their family members is unpredictable. Without obtaining information specific to the individual, medical staff may wrongly interpret a patient’s emotional reaction to a medical procedure, or they may overestimate the emotional support family members are able to provide. An open discussion of a patient’s personal history facilitates an approach in medical care that helps the individual achieve a complex emotional, social, and physical recovery from their injuries.
When my participants narrated their personal histories related to war violence, they experienced a turning point in their lives. The participants’ reflections, coming after a period of physical recovery, taught me an important lesson: their personal losses were intertwined with the collective losses that occurred in their families, among neighbours, and in the broader society.
Hence, those who provide care for war victims, such as MSF, play an important role in creating improved internal and external circumstances for their patients. For patients, an inescapable part of recovery and forward motion in the changed reality after severe injury depends on the patient’s own agency, coping skills, and creativity.
This book has opened up a number of topics for future research. Among them is the process of combining the medical model and the social model in the humanitarian field and among other disability-healthcare providers. One of the original aspects of this research was to frame the concept of “quality of life” following patients’ own definitions. This novel approach could be used as an evaluation tool in other humanitarian programmes. More broadly, the symbolic meanings attached to disabled bodies in different settings, and a comparison between attitudes in conflict zones and in areas of peace, might support better understanding of symbolic healing. Finally, how the Middle East incorporates its invalids into its social fabric after the wars are over is a topic that will enrich knowledge of disability and rehabilitation, which is, I believe, a fitting point with which to close my reflections.