Politicising Polio
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Politicising Polio

Disability, Civil Society and Civic Agency in Sierra Leone

Diana Szántó

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eBook - ePub

Politicising Polio

Disability, Civil Society and Civic Agency in Sierra Leone

Diana Szántó

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About This Book

This book examines disability in post-war Sierra Leone. Its protagonists are polio-disabled people living in the nation's capital of Freetown, organizing themselves as best as they can in a state without welfare. There is little concrete support for people with disabilities in a country where the government is struggling with the competing requirements of the international community, demanding - in exchange for its support - good standards of democracy and the maintenance of a free market economy. To what extent is the Human Rights framework of the disability movement effective in protecting the polio-disabled and what are the limitations of this framework? Diana Szántó's detailed ethnography reveals, through many real-life examples, the vulnerability of disabled people living in the intersections of poverty, informality and disability activism. At the same time, it also tells about the many ways the polio-disabled community is transforming vulnerability into strength.

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Part IStaging a Play (A Critical Ethnography of Disability)
© The Author(s) 2020
D. SzántóPoliticising Poliohttps://doi.org/10.1007/978-981-13-6111-1_1
Begin Abstract

1. The Set: Parallel Worlds (Sierra Leone on the World Stage)

Diana Szántó1
(1)
Budapest, Hungary
Diana Szántó
End Abstract
The day was not yet over. I had spent the morning and afternoon at a ‘sensitisation workshop’ and I was exhausted. The Dutch project manager had made us, the staff members, use crutches and wheelchairs on a dirt road—which was, in reality, the main road of the city—mined with holes, bumps and stones. This was an excellent way to sensitise abled-bodied people to the difficulties faced by those with mobility disabilities as they move around in a city so little accessible as Koidu Town. Using the mobility aids was a most strenuous exercise. The workshop was also attended by members of local DPOs (disabled people’s organisations) whose task was to assist the non-disabled trainees. A second, implicit objective of the event was training DPOs for efficient advocacy methods. The disabled participants made many amused remarks inspired as much by our clumsiness as by the ridiculously dire state of the roads in the district of Kono.1 It was 2008, just 6 years after the final peace and exactly 1 month after I had started my fieldwork, for which I had gotten engaged as a volunteer for a big international organisation, the same which organised the sensitisation training bringing together disabled people from Kono, NGO workers from Freetown and expatriate staff from all over the world.
One exchange from the day stuck in my mind. A young man noted, bitterly, that it was not even necessary for expatriates to learn how to walk ‘amongst the wholes’ as they move around solely with their big jeeps, unlike their beneficiaries. For him, ‘expatriate’ meant any foreigner working for an international organisation, but the word was clearly more a status marker than a simple observation about a person’s national affiliation. An older woman retorted that jeeps are good for the city: their presence, she had said, would oblige the government to rebuild the roads. Then everyone agreed that the government had abandoned them. The anger provoked by this realisation suddenly united them across their divergent views.

Foucault, NGOisation, Disability

The scene sheds light on a salient feature of post-conflict Sierra Leone: the preponderant role of international NGOs and their everyday interference with ordinary people’s lives. NGOs were the biggest service providers after the war and their omnipresence transformed state-society relations, and even society’s understanding of itself, resulting in a particular type of social formation, which Sampson—writing about NGO-led development in the context of the Balkan wars—called ‘project society’ (2005) In project society, the state outsources many of its social tasks to private organisations, leading to a patchwork of short-term, unrelated interventions with questionable long term impact. But project society is not only about service delivery; it is about a social structure in which the liberal ideology promoted by those in power creates opportunities for those on the bottom to climb up the social ladder by joining the officially recognised part of civil society. In this way, civil society, made responsible for many public functions of the state, was effectively NGOised (Berghs, 2013; Meyers, 2016; Szántó, 2016a).
As a result, although INGOs were in principle part of civil society, in practise they were often seen as mediating intentions of governmentality—the latter originating from a governing structure in which the boundaries between the national government and the international community became blurred. Local civil society organisations, such as DPOs , were willy-nilly drawn in this system of mediation between society and the government’s will by the intermediary of INGOs. DPOs were expected to talk to INGOs as an NGO and to ordinary people like one of them. So that they could efficiently play this double role, they had to be made similar to NGOs, at least formally: they too had to be NGOised. DPOs were often trained by INGOs to bureaucratic practises (project writing, budgeting, report writing, monitoring) or to liberal concepts (lobby and advocacy, human rights, good governance and so on.). Thus, NGOisation was not only about organisational transformation but also about developing new sensibilities, adopting a new vocabulary, integrating a new value system, in short, forming new subjectivities . It is in this way that the reconceptualised ‘civil society’ became part of governmentality in the Foucaultian sense. According to Foucault, governmentality encompasses ‘all those more or less calculated and systematic ways of thinking and action that aim to shape, regulate, or manage the comportment of others’ (Scott, 2005:1). By promoting a new vision of the social, civil society became part of a grandiose transformative project, implemented jointly by the Sierra Leonean government and its Western allies, aiming at reinventing Sierra Leone by reinventing Sierra Leoneans.
The most blatant manifestation of this consolidated effort was the Attitudinal Change Campaign. Attitudinal change was more than a societal project, it was an institution. In 2008 it had its own government office, the Secretariat of Attitudinal Change, attached to the State House. The Secretariat was doing large scale PR work. Giant posters all over the city publicised the new social ideal. Most posters depicted condemnable practises: corruption, gerontocracy, gender-based violence, unprotected sex, exclusion of disabled people and HIV patients … somehow creating the impression that local culture was full of these tars. The verbal message completing the visual information usually addressed the viewer in the second person, admonishing them to stand up against bad ‘attitudes’. The image of an ideal citizen was painstakingly being fabricated in the streets: a rational, accountable individual, conscious of their own rights, resisting the retracting forces of tradition, ‘backward culture’ and collectivism, ready to take responsibility for himself and for others, willing to consume and desiring to realise his aspirations by participating in a fictional society in which it was enough to take an individual decision to set things in the right direction.
The workshop in which I participated with the DPOs was also pedagogical in nature. By putting non-disabled people in the place of the physically impaired, obliging them to get about on the bumpy roads of Koidu Town, its explicit goal was fighting against discrimination. I found the workshop highly educative, but I ignore how much it succeeded in changing attitudes. What I know is that the ‘disability sensitisation’ followed the same logic as the attitudinal change campaign: it put the blame on collective mentalities or on cultural misconceptions for suffering that to me seemed to have pretty clear structural reasons . Whatever change the workshop achieved in people’s minds, the bumpy roads would still be there the next day and members of the local DPOs would continue to struggle their way through stones, potholes and puddles.

The Black Magic of Whiteness

Just before the workshop ended, Manish arrived. Although he was disabled from polio, he did not pretend to be a participant in the workshop; he had come only to see me. We had met just a few days before, but he already treated me like an old friend. I did not know yet that he would become my Sierra Leonean family. I never adopted him officially but I developed some kind of parental responsibility for him. With time, he also adopted me. Manish was a native of Kono but lived in Freetown. He was in Koidu because his organisation was invited—by the same NGO I worked for as a volunteer—to do awareness-raising in the neighbouring villages. His group, the Walpoleans, toured neighbouring villages like troupers, dressed in picturesque costumes, presenting a partly musical, partly theatrical performance about disability. I decided to join them on their tours and so we became friends. Manish came to see me because I had told him that I wanted to visit a young disabled boy on the outskirts of the city. Always protective, he had proposed to accompany me. I did not think I needed protection, but I was happy to have his company.
When we reached the city’s outskirts, it was already half-dark. I thought I knew the way, but we were soon lost. The street was not really a street, but a path cut through the bush. There was no other light but the flame of the kerosene lamps burning on small wooden stalls in front of the houses. I saw a young woman stepping out of the forest, and I rushed to her, hoping for guidance. To my surprise, instead of answering me, she screamed. With a terror-stricken look, she ran away as fast as she could. I was flabbergasted. I waited for Manish to catch up and looked at him questioningly. At first, he could not even speak, he was laughing so much. At last, he told me, amused, ‘she has mistaken you for Mami Wata’. I had no idea what he was speaking about.
Only later did I understand, Mami Wata is the name given to a water-bound spirit, known to surprise lonely walkers (especially young ladies walking alone in the forest after sunset). She promises them prosperity, then attacks and kidnaps them, dragging them down to watery depths. Mami Wata is white, like Europeans, like me. Manish was surely right to name the source of the woman’s terror. Mami Wata is not just a concept, a metaphor or a superstition. In Sierra Leone, she is real. She inhabits an empirically sensed and phenomenologically lived world. In this world, logics are articulated and things happen in ways that are sometimes utterly strange for outsiders, but yet, they make perfect sense for those who are inside. As my day of training with white NGO ‘expatriates’ and black disability activists came to a close, I had been given a vivid reminder of my, and our, ambiguous role in local society.
Coming from the sea, from where the first Europeans arrived many centuries ago, Mami Wata embodies the treacherous relationship Sierra Leoneans have entertained historically with foreigners from the West (Shaw, 2002). Europeans, white people and Mami Wata are associated with potential material gain, but also with possible harm. Since the mid-1990s, and especially since the end of the war, International NGOs (INGOs) which send in overwhelmingly white staff, have come to share in this representation, recreating a link again between development and exploitation. Around me, everybody’s dream was to work for an NGO, or at least to write a project and get some funding from them. At the same time people constantly complained about the NGO presence, they accused NGO staff of spending the largest part of project money on their own salaries, big jeeps and ‘useless’ office space without making much visible impact. People were also suspicious: they thought that some of these NGOs were fake and their only intention was to exploit the availability of project money. I heard many stories about would-be philanthropists who turned up at disabled communities, took a few pictures and then disappeared, supposedly ‘to make a lot of money on the back of the disabled’. Somebody told me about an American woman whose camera was confiscated and she got almost beaten up and certainly chased away when she tried to take pictures in one of the disabled houses. Expatriates too were like Mami Wata: they were the ambiguous messengers from another, shinier world, but their promises risked to betray those who trusted them too much.
I had come to study disability in Sierra Leone as an expatriate. I did not get any salary, but my volunteer status at an important NGO assured me legitimacy, opened me doors and procured me some comfort, a scarce resource in post-conflict Freetown. At the same time, I gained access to places expatriates rarely entered and I preferred to hang out with my disabled friends to going out to night clubs. My own ambiguity was greater than that of other expatriates and I was keenly aware of it. My accidental encounter with Manish opened for me a gate to a universe that I had not known existed: that of the polio-disabled communities. This opening at the same time shut a lot of doors and limited my view on disability to that of the collective manifestations of polio. Once I began to study the polio-homes and the DPOs associated with them, my attention to peoples marked by war-wounds, blindness, deafness and many other ‘disabilities’ lessened correspondingly.
Yet it gradually became clear for me that the story of the polio-disabled also speaks about a shared experience of ‘disability’ in Sierra Leone. Manish was my most important guide on this learning path. His own story, which runs throughout these chapters, might serve as a confirmation to the point I would like to make here: every individual story gains sense only as part of a number of collective stories, and each collective story runs into a larger story, called history.

The Treacherous History of Sierra Leone

My arrival in 2008 was also anchored in history. Soon I realised that anything that I wanted to learn about was somehow related to the war. It was surely not possible to understand the post-conflict without the conflict and it was not possible to understand the conflict without looking at the preceding years of independence, itself being forestalled by the colonial times or even further away, by slave...

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