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Politicising Polio
Disability, Civil Society and Civic Agency in Sierra Leone

DIANA SZÁNTÓ
Politicising Polio
 Diana Szántó

Politicising Polio
Disability, Civil Society and Civic
Agency in Sierra Leone
Diana Szántó
Budapest, Hungary

ISBN 978-981-13-6110-4    ISBN 978-981-13-6111-1 (eBook)

https://doi.org/10.1007/978-981-13-6111-1

© The Editor(s) (if applicable) and The Author(s) 2020

This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether
the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of
illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and trans-
mission or information storage and retrieval, electronic adaptation, computer software, or by similar or
dissimilar methodology now known or hereafter developed.
The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication
does not imply, even in the absence of a specific statement, that such names are exempt from the relevant
protective laws and regulations and therefore free for general use.
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The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721,
Singapore
To Edward, Hady and Manish
 Preface

This book is not about disability per se. It is about people, ‘much like
ourselves’, could I say, in the trail of Eric Silla writing about a ‘leper com-
munity’ in Mali, if I was not afraid that such a statement would antago-
nise people with disability, creating an us and them divide, right at the
beginning. Such a divide is quite the opposite of what I would like to
achieve with this book. My protagonists are certainly disabled, but first of
all, they are people, people fighting to survive, collectively and individu-
ally, loving, hating, playing, praying and working. I do not want to deny
the specificity of their experience, but I am more interested in what they
have in common, with me, with other Sierra Leoneans, situating, as Silla
did, ‘the lives of a small and hidden minority within the larger patterns of
the human experience’ (Silla, 1998:15).
The people I write about are extraordinary in several ways. They live
with the sequels of polio and organise themselves in self-managed collec-
tive shelters in Freetown, the capital of Sierra Leone. Beyond disability,
they have to cope with poverty, uneven development and with the strange
distance of the state, appearing to be sometimes too far, sometimes too
close. They are not simply poor, they are affected by poverty in complex
ways. Acknowledging that their poverty is multidimensional (Eide &
Ingstad, 2011; Groce, Kett, Lang, & Trani, 2011) does not only mean
recognising the intersectional characteristics of structural violence affect-
ing disabled people. It may lead to the realisation that poverty itself may
vii
viii Preface

constitute disability (Eide & Ingstad, 2013). The Freetown polio-disabled

fight many of their fights not as disabled people, but as informal inhabit-
ants of the city. They are vulnerable not only to discrimination but also to
urban modernisation creating a scarcity of land and leading to the overrat-
ing of urban real estates pushing the poor out of the city. With this ethnog-
raphy, therefore, I relate to several scientific communities, interested in
disability but also in urban studies. Within disability studies I join those
working on ‘disability in the Global South’ (Holzer, Vreede, & Weigt,
1999; Ingstad, 1990, 1999; Ingstad & Whyte, 1995, 2007; Shuttleworth,
1999), hoping that I can contribute in this way modestly to the collective
project of ‘decolonising disability’ (Connell, 2011; Fougeyrollas, 2010;
Grech, 2015a, 2015b, 2016; Meekosha, 2011; Meekosha & Soldatic,
2011; Mji, Gcaza, Swartz, MacLachlan, & Hutton, 2011; Onazi, 2016),
by inversing the direction of knowledge transfer traditionally going from
the North to the South (J. Comaroff & Comaroff, 2012), proving that
disabled people organising themselves in other places of the world can
actually learn from the example of the Sierra Leonean polio-disabled. More
particularly, I hope to contribute to the knowledge about disability in
Sierra Leone (Berghs and Dos Dantos-Zingale, 2011; M. Berghs, 2016;
Groce, 2018; Ibrahim; McColl, 2006; Ovadiya & Zampaglione, 2009;
Ibrahim and Shepler, 2011; Trani et al., 2009, 2011) adding to the still
small but growing corpus of ethnographically-inspired studies of particular
disabled groups (M. Berghs, 2012; Cole, 2014). As much as I know, mine
is the first ethnographic research of the self-­managed polio-communities.
Within urban studies this work seeks to establish connection with pre-
vious research on the construction and meaning of urban space (Boeck &
Plissart, 2014, first edition 2004); Certeau, 1984; Harvey, 1993; Lefebvre,
1991), on urban poverty, spatial exclusion and neoliberal urban develop-
ment (M. Davis, 2006b; De Boeck, 2011; Goodfellow & Smith, 2013;
Kamete, 2013; Roy & AlSayyad, 2004). It wishes to enter in conversa-
tion with those authors whose analysis of urban space feeds into a broader
critical theory of late capitalism (Ferguson, 2010; Sassen, 1991, 2014),
finding natural affinity with ideas considering urbanity as a space from
where innovation and positive democratic transformation may emerge
(Harvey, 2012; Holston, 2008; McFarlane & Waibel, 2012; Pouligny,
2005; Samara, He, & Chen, 2013; Simone, 2004).
 Preface ix

The stories of the polio-disabled of Freetown organised in self-­managed

collective homes teaches us first of all about the collective agency of people
with disability. But more broadly, these stories speak also about the nature
of the social and political transformations which Sierra Leone embraced at
the end of its decade-long civil war (Adolfo, 2013; Bangura, 2015;
Christensen & Utas, 2016; Cubitt, 2013; Fanthorpe, 2005; Fithen, 2005;
Millar, 2014; Newman, Paris, & Richmond, 2009; Pouligny, 2005;
Richards & Helander, 2005; Tom, 2017; Utas, 2005). In this way, the book
is an account of the top-down post-conflict democracy building from the
perspective of the bottom. The type of democracy that was being built in
Sierra Leone after the war was promoted globally (by peaceful and less
peaceful means) from the late 1990s. It was based on a few simple princi-
ples: free multiparty elections, open markets and a thriving civil society. Not
unrelated to this process, in the same period, civil society became definitely
equated with formal organisations known as civil society organisations or
NGOs. The new moral and political importance attributed to civil society
led to the rapid increase of civil society organisations both in number and
in influence, resulting in a particular social formation that was called else-
where ‘project society’ (Sampson, 2005; Steven, 1996). For the disabled
people in Sierra Leone, this form of democratisation shaped the space from
where their voice could be heard. The self-organising polio communities
with which I deal here found a way to legitimise their collective agency as
part of the official ‘civil society’ from their position of ‘disabled people’s
organisations’ (DPOs). In this way, the informal collective polio homes
became incorporated in project society. For a long time, I thought I was to
write an ethnography of NGOisation. Retrospectively, this ethnography
rather appears to be an account of the rise and decline of project society.
My own positionality becomes important here to understand my per-
spective on this process. While I am writing, I am still responsible for a
small NGO in Hungary. Thus, my interest in project society is not an
unbiased one. I am one of its natives. Also, I am European, a member of
this large community so much used to being in the centre of World his-
tory. As a European, I am part of the colonisers. Even if I want to get rid
of this heritage, the mixture of arrogance, Eurocentrism and shame of
which it is made is part of my cultural heritage. It complicates my rela-
tions with Africans—and with myself. However, within Europe I am
x Preface

Hungarian, and as such, I have intense embodied experience of belonging

to a semi-periphery, or rather of not belonging to the ‘superior’ civilisation.
My fieldwork started in 2008 and it officially ended in 2011. 2008 was
4 years after Hungary entered the European Union and 6 years after
Sierra Leone ended the war. My personal story with Sierra Leone and
with the polio-houses, however, did not come to an end in 2011. I
defended my doctoral thesis only in 2015. Between 2011 and 2015, and
even after, I continued to visit Sierra Leone at least once every year and
my observations during my visits have kept informing and gradually
transforming my understandings. This situation created a methodologi-
cal puzzle when I set about turning the dissertation into a book in 2018.
A lot of things I had been writing about simply were not there anymore;
instead, new people, new institutions and new dynamics had emerged. If
I wanted to update my manuscript, I practically should have started a
new fieldwork. That was impossible. At the same time, I could not pre-
tend that the world had stopped spinning the moment I wrote down the
last words of my dissertation. At the end, I chose a hybrid solution. In the
first part of the book, I have left the ethnographic material largely
unchanged. In this way, this part, labelled as ‘critical ethnography’,
became an imprint of time, a critical ethnography of project society as it
appeared to be between 2008 and 2011. It is organised largely along a
metaphoric extension of Erving Goffman’s distinctions between social
roles and behaviour ‘front stage’ and ‘backstage’. I was struck, in my ini-
tial analysis, by the very different realities that my participants projected
when they were acting publicly as members and leaders of DPOs and by
how they lived and reflected on their lives in and around the polio-homes.
Yet, as the on- and offstage worlds were not fully distinct, and my infor-
mants never really left the front stage to recover themselves in ‘private’
lives backstage, I also found it fruitful to think in terms of parallel uni-
verses, which sometimes collide. The second part of the book, that I bap-
tised an ‘ethnographic critique’ also bears the mark of this epoch but the
ethnographer’s gaze is informed here by intellectual and world
­developments after 2011, as it looks back on the recent past from the
moment of the writing. In this section, the ‘performances’ documented
during fieldwork are seen to have been taking place in a context of steadily
increasing structural violence. The last chapter assumes fully this shift in
perspective and becomes an admittedly subjective reflection on memories
 Preface xi

of the past ten years, as well as about the possible consequences of these
reminiscences on understanding the present and imagining the future.
A few more words about the terminology. In disability studies, the
expression ‘people with disability’ is usually associated with what is called
the ‘medical model’ of disability, while the formula ‘disabled people’ is
traditionally claimed by proponents of the ‘social model’, although the
literature is hardly completely consistent. In short, the social model affirms
that people with disabilities are not inherently unable to lead ‘normal’
social lives—but that it is rather society that has not organised itself insti-
tutionally, physically, socially or mentally to enable people with impair-
ments to reach their full potentials in society. This approach emerged as a
counter currant to the earlier medical model, hegemonic in the early and
mid-twentieth century that approached disability as a ‘medical’ condition
or as a ‘personal tragedy’. As an outsider to the disability movement as
such, I am not fully committed to either model. As a result, I do not adhere
strictly to either of the two formulations. I take the liberty to apply the two
expressions interchangeably, stressing context, use and meaning over the
adoption of a particular formula. In reality, I am quite uncomfortable with
both terms because of the wide variety of ‘disabilities’ that they encompass
as if each impacted social possibilities and experience in the same ways and
degrees; and as if disability trumped all other social qualities in defining an
individual’s identity. Still, I do not want to extend the terminological com-
plexity by inventing yet another alternative expression. Instead, I accept
that no matter how much distance I try to take from dominant discourses,
my own position too remains strongly shaped by the limits which available
models, words and images impose on the imagination.
Terminology confronts me with another, comparable problem when I
try to describe the places where polio-disabled people live. In local par-
lance, these places are called simply homes or houses. There are slight
difficulties with both of these terms. The term disabled-home reminds
me of previous forms of charities set up for the disabled. This association
is very unpleasant because it works against the recognition of the agency
of today’s polio-disabled organised in collective places. To speak about
polio-houses is less problematic, but the term evokes a building and all
homes are not ‘houses’, some are rather settlements. I sometimes use the
term squat, which is clearly an etic notion for which I fully assume respon-
sibility. I never heard the word in the local context and probably for a good
xii Preface

reason as it seems to signify somehow something ‘not totally accepted’.

This is precisely the reason why I prefer it, because it shows the collectives’
ambiguous status between formality and informality. To me a squatter is a
person who uses his or her own agency to affirm the right to live in a place
instead of waiting for a third person to find a solution. I believe that this
image expresses the best how the polio homes/houses/squats are in the
world. Again, I cannot promise consistency because it is sometimes impor-
tant to draw on one or another association more than on a strict defini-
tion. I will use therefore the three above versions interchangeably.
Civil society is also a problematic term. Calling civil society ‘civil’ does
not seem to be particularly dangerous. But here is the problem: civil soci-
ety has been so much equated with the NGO-world that every time the
term is pronounced the equation does not appear only acknowledged but
it becomes effectively reinforced. As this ambiguity leads ultimately to the
emptying of the concept, the safest solution would be to avoid using the
latter altogether. This, however, is not a viable solution for at least two
reasons. First, in Sierra Leone, where ‘building civil society’ seemed to be
the immediate answer to any social problem, locals constantly spoke about
it. It is thus an important emic expression but also for me, the concept of
civil society—despite its strong association with NGOs—still points at
something bigger, to a higher societal ideal contributing to the common-
weal or to social cohesion fabricated patiently in small circles (J. L.
Comaroff & Comaroff, 1999). And so, I use ‘civil society’ in two distinct
ways—as an emic term, referring to an assemblage of specific types of vol-
untary associations and as an etic, analytical term, referring to collective
efforts towards greater social cohesion. In this second, metaphoric sense, I
believe ‘civil’ and ‘civic’ are indeed interchangeable and neither of them is
necessarily connected to NGOs. Although I do not attribute to the NGO
world the virtue of being by definition civic; I recognise that in some cir-
cumstances, many NGOs (or CSOs) might fulfil this condition.
Lastly, I want to say something about names. In anthropology, the
interest in ethics is perceptibly growing. This is a healthy sign of critical
self-control. Obviously, I am also concerned about presenting my research
participants in the most ethical way possible. One standard solution to
protect the personal dignity of ‘informants’ is to anonymise them.
Personally, I feel that losing one’s signature over one’s life is not very
respectful of human dignity. During fieldwork I promised anonymity
 Preface xiii

only in specific cases and I never received explicit demand for it. For
respect of my participants’ individuality, I usually use the real names by
which they are known. I make exceptions however for cases where con-
troversial issues are discussed or the details to be shared might have nega-
tive consequences on the person. In these instances I use a pseudonym
(always signalled in the text). Full personal names are given in situations
when people appear in their public persona.

Budapest, Hungary Diana Szántó

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Disability in and around urban areas of Sierra Leone. In L. Carmi (Ed.),
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 Acknowledgements

The topic of my doctoral thesis was not an obvious choice. After my ini-
tial training as a cultural anthropologist, my first fieldworks took me to
Lowland South America, after which I worked for decades on research
projects of urban anthropology in Europe. I was 38 when I first set my
foot in Africa, contracted by an NGO to do a small intervention in a
country in war, of which I had not known much about: Sierra Leone.
Little did I suspect that this first short visit would mark the beginning of
a long adventure, one outcome of which is this book. A long and winding
path led me to discover new territories, such as disability, and estranged
familiar ones, such as civil society. It has been a wonderful but sometimes
perilous voyage and I would not have made it without those who shoul-
dered me. I also lost some of my companions on the way. My first thought
of gratitude goes for Manish. Let me write his real name here, which he
seldom used: Abubakkar Sidiki. He was a friend, a teacher, a bodyguard
and an inspiration, he also became a son. He was my first and most
important guide in the admirable universe of the polio-disabled. Knowing
him was an extraordinary gift of life. I cannot remember Manish without
thinking of those who were a family to him, and so, by extension, to me
too: Hady and Edward. Their loving but firm guidance opened me doors
and showed me ways to navigate the complicated landscape of disability
activism in Sierra Leone. The organisation that they co-founded, One
Family People, is certainly the most astonishing NGO that I have ever
xix
xx Acknowledgements

seen working: following always its creators’ illuminated vision, braving

the uncompromising logic of project society. Through OFP I also became
adopted by the Walpoleans, a fantastic group of disabled singers, musi-
cians and dancers, of which Manish was the frontman until his death.
Besides having learned a lot from its members, I owe the Walpoleans for
the irresistible hope and joy of life they radiate.
There is hardly enough space here to enumerate all the other helpers,
protectors, teachers and friends whom I encountered in Sierra Leone and
without whom this book could have never seen the light. Many of them
became its protagonists. My special thanks go to disabled activists, lead-
ers and members of DPOs who let me have a glimpse into their lives
through interviews and countless conversations which taught me not
only about the politics of disability but also about the everyday reality of
polio. Sylvanus, Mariama, Cyprian, Ibrahim, Isaac, Paul-Ousman, Alhaji,
Yebu, Patrick, Abuti, Augustus, Seniorman, Kombah, Mohamed, Sally
and George come to my mind first, but the list remains necessarily
incomplete and I am aware of my indebtedness to a much larger com-
munity. My work led me to discover and explore 14 self-sustaining polio-­
communities and here I would like to express my admiration to each and
every person who runs and maintains these structures. I hope that my
admiration transpires in the pages of this book.
On the way, I met other human rights activists in the larger civil soci-
ety, many of whom became friends. I am grateful to Shellac, whose
friendship meant a lot to me, to Jabati, Paul and Bongay, my patient
teacher of language, tradition, culture and politics. I also would like to
thank Professor Eldred Jones, the doyen of Sierra Leonean Disability
activism, who had the kindness to receive me for an interview, despite his
respectable age and busy schedule.
Fieldwork in Sierra Leone was practically made possible thanks to the
generous support of Handicap International. I am very grateful both to
the headquarters in Lyon—especially to those who personally gave me
the permission to work as an anthropologist integrated in the Sierra
Leonean mission—and to the team in the field who helped me out with
office space and accommodation. During the years I met several country
directors, expatriate and national staff, who shared their experience and
company with me. I am aware that for an international NGO to allow
 Acknowledgements xxi

this space for an anthropologist means an extra burden and I really appre-
ciate the openness and generosity with which they received my request.
I have a lot of consideration to people and organisations who and
which helped me in Sierra Leone. But research starts much before field-
work and it does not end with it. I have the pleasant duty here to cite also
the institutions which made my work possible downstream and upstream.
The Marie Curie Program of the European Commission assisted me to
get prepared for my first field trip in the best possible conditions, as a
guest fellow in the Upper Guinea Coast Research Group of the Max
Planck Institute for Social Anthropology in Halle/Saale (Germany). The
Wenner-Gren Foundation financed the largest part of fieldwork and later
it even provided me with an ‘engaged anthropology grant’ for a short
follow-up trip that allowed me to organise lectures and workshops for
disability activists and NGO workers in Sierra Leone, offering them a
summarised version of the conclusions of my research. In Hungary, I had
the chance to be selected for the Jedlik Ányos National Excellence
Program for Doctoral Candidates, which allowed me to work only part-­
time during one year in the writing-up phase. The programme even
offered me a National Excellence Prize acknowledging the quality of my
research. Another Hungarian funding scheme, the Campus Hungary
Program financed a two-month visiting fellowship in the Nordic Africa
Institute in Uppsala (Sweden), a short but conclusive study trip which
was instrumental in getting the manuscript organised.
My gratitude necessarily goes also to the Academic institutions that
hosted me and my research during these years: I started the PhD pro-
gramme in the Cultural Studies Doctoral Programme of the University of
Pécs (Hungary) but finished it as a student of another doctoral pro-
gramme of the same university, in the Interdisciplinary Doctoral School
of European Ethnology and Cultural Anthropology. I also owe a lot to
the Department of Sociology and Social Anthropology of the Central
European University (Budapest, Hungary) which invited me to its PhD
seminar. I remember dearly too my original alma-maters. I had two of
them as I learned to be an anthropologist in a joint French-Hungarian
academic programme, obtaining my diploma simultaneously in the
University ELTE in Budapest and in the University of Nanterre in Paris.
These places did not only mean institutional support but also, more
importantly, the opportunity to meet professors from whom I could learn
xxii Acknowledgements

the basics of my profession and with it also something infinitely more

important: the possibility of engaging in conversation with other cultures
and the responsibility of the researcher. I probably would not be an
anthropologist today if I had not met Lajos Boglar, my first teacher. My
doctoral thesis owes its existence in particular to my two supervisors,
Gábor Vargyas (University of Pecs) and Andreas Dafinger (Central
European University), who have always been available for me and whose
critical observations and professional insights fertilised my reflections.
Other senior researchers and teachers helped me with counselling and
critics, amongst others: Michael Stewart, Péter Niedermüller, Jacqueline
Knörr, Mats Utas, John Clarke and Mihály Sárkány. Personal discussions
and correspondence have been inspiring with friends and colleagues,
amongst whom I would like to mention Anita Shroeven, Maria Berghs,
Annamarie Losonczy and last but not least, Bea Vidacs, who has proven
not only to be a true friend but also a patient mentor. Tom Shakespeare
and Sylvanus Bundu kindly read parts of the manuscript, advising me
from a disability studies and disability activism point of view.
Despite the excellent training that I have received both formally and
informally during my studies, my meagre knowledge in quantitative
research would have proven a serious handicap had not it been for two
committed helpers. I would not have been able to exploit my material
statistically without the assistance of Balázs Danka, who is responsible for
all the statistical calculations and graphs, and without Márton Gerő, who
gave me lessons in network analysis and worked on the visual representa-
tion of the networks I identified. The maps I created to situate the polio-­
houses of the Western area have been redrawn with care by Anna Szemerey.
I also would like to thank a group of friends from France, especially
Denis Ramos and Ferdinando Formoso, who shared with me some
moments of this extraordinary experience and helped me to document it
with a camera. Not the least, I must thank those who supported me by
putting up with my long absences and lack of presence during the years
while I was alternating fieldwork and writing: my family, my friends and
my colleagues at Artemisszio Foundation. Finally, let met thank Jennifer
Cash, who has been my professional companion for the past year, helping
me not only with the language editing but also with her always sharp
professional insights.
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