Professional Documents
Culture Documents
Autism in
Translation
An Intercultural
Conversation on Autism
Spectrum Conditions
Edited by
Elizabeth Fein & Clarice Rios
Culture, Mind, and Society
Series Editor
Peter G. Stromberg
Anthropology Department
Henry Kendall College of Arts and Sciences
University of Tulsa
Tulsa, OK, USA
The Society for Psychological Anthropology—a section of the American
Anthropology Association—and Palgrave Macmillan are dedicated to
publishing innovative research that illuminates the workings of the
human mind within the social, cultural, and political contexts that shape
thought, emotion, and experience. As anthropologists seek to bridge
gaps between ideation and emotion or agency and structure and as psy-
chologists, psychiatrists, and medical anthropologists search for ways to
engage with cultural meaning and difference, this interdisciplinary terrain
is more active than ever.
Editorial Board
Eileen Anderson-Fye, Department of Anthropology, Case Western
Reserve University
Jennifer Cole, Committee on Human Development, University of
Chicago
Linda Garro, Department of Anthropology, University of California,
Los Angeles
Daniel T. Linger, Department of Anthropology, University of California,
Santa Cruz
Rebecca Lester, Department of Anthropology, Washington University
in St. Louis
Tanya Luhrmann, Department of Anthropology, Stanford University
Catherine Lutz, Department of Anthropology, University of North
Carolina, Chapel Hill
Peggy Miller, Departments of Psychology and Speech Communication,
University of Illinois, Urbana-Champaign
Robert Paul, Department of Anthropology, Emory University
Antonius C. G. M. Robben, Department of Anthropology, Utrecht
University, Netherlands
Bradd Shore, Department of Anthropology, Emory University
Jason Throop, Department of Anthropology, University of California,
Los Angeles
Carol Worthman, Department of Anthropology, Emory University
Autism in Translation
An Intercultural Conversation on Autism Spectrum
Conditions
Editors
Elizabeth Fein Clarice Rios
Duquesne University Department of Social Psychology
Pittsburgh, PA, USA Federal University of Rio de Janeiro
Rio de Janeiro, Brazil
This Palgrave Macmillan imprint is published by the registered company Springer Nature
Switzerland AG
The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland
Series Preface
v
vi Series Preface
The editors of this book first met at a meeting of the Society for
Psychological Anthropology. Ever since then, SPA has been a fer-
tile intellectual home for this project. We are therefore honored to be
publishing this book within the SPA series, Culture, Mind and Society.
We’d like to thank Peter Stromberg, Yehuda Goodman, Rachel Daniel,
and Kyra Saniewski for their welcome of this book and their invaluable
help preparing it for publication. We’d also like to thank Derek Hook,
Daniela Manica, and an anonymous reviewer for their helpful comments
on various parts of this manuscript, Benjamin M. Gaddes for editorial
assistance, and Lisa Rivero for a meticulous and conceptually sound
index.
The workshop that produced this book was supported by the
Lemelson/Society for Psychological Anthropology Conference Fund,
made possible by a generous donation from the Robert Lemelson
Foundation. For the past decade, the Foundation has funded meet-
ings organized around innovative topics in psychological anthropol-
ogy, ranging from cross-cultural critiques of attachment theory to the
power of comic books to enhance understandings of medical care. These
workshops have advanced both the theory and practice of psycholog-
ical anthropology, in the kind of new directions that can emerge only
from protected time and space for good conversations and sustained
thought. In supporting an international collaboration that took place
in a country going through significant political and financial upheaval,
the Foundation took on a new set of logistical challenges. We appreciate
vii
viii Acknowledgements
1 Introduction 1
Elizabeth Fein and Clarice Rios
1.1 Where Did This Book Come From? 1
1.2 The Event 5
1.3 The Volume 8
1.4 Broader Themes 10
References 13
ix
x Contents
14 Joy 283
Dawn Prince-Hughes
Index 291
Notes on Contributors
xv
xvi Notes on Contributors
Introduction
E. Fein (*)
Department of Psychology, Duquesne University, Pittsburgh, PA, USA
C. Rios
Department of Social Psychology, Federal University of Rio de Janeiro,
Rio de Janeiro, Brazil
especially when put into conversation with other disciplines and domains
of practice (Korbin and Anderson-Fye 2011, 415).
As a phenomenon with irreducibly individual and interpersonal instan-
tiations, possessing both robust similarities and intriguing differences
across contexts, autism serves as a powerful point of departure from
which to consider questions at the intersection of these two fields. How
do individual differences that exceed or transcend local norms get con-
ceptualized, diagnosed, and treated within different societies with differ-
ent medical infrastructures and expectations for social relations? How do
diverse processes of socialization affect the cross-cultural manifestation
of individual differences? How do relationships between the individual,
the community, and the state shape political claims about disability, bio-
social identity, and public health? How do individuals living under such
descriptions understand their condition and themselves? Dis/ability is
inextricably linked to the relationship between self and society (Ingstad
and Whyte 1995); the power of autism to destabilize and reinscribe
assumptions about sociality, intersubjectivity, and communication refracts
these issues in disruptive and potentially generative ways.
In order for anthropological theory to effectively address these ques-
tions, we felt, its development needs to be driven by the inclusion of
paradigms from outside the global North. However, the dominance of
English as a scholarly language, the scarcity of resources within academic
environments in low- and middle-income countries, and the challenges
of speaking across deep-seated and long-standing ontological and epis-
temological differences all contribute to the marginalization of South
American intellectual traditions within supposedly globalized discourses.
In particular, as we observed the increasing influence of work in the
field of Global Mental Health (GMH), we were becoming increasingly
concerned about the dominance of Northern perspectives and priorities
within this growing field and its interventions. One aim of this event was
to begin, in some small way, to destabilize this dominance.
A core premise of this event has always been that the contexts of
knowledge production matter. Physical spaces and arrangements, insti-
tutional infrastructures, status hierarchies, and their impact on spatial
position, the sheer distance that a voice can carry, when amplified (or
not) through one technology or another—all of these things constitute
a matrix through which ideas are born and through which they rise and
fall. It felt important to us to come together in a physical way, to be in
each other’s presence in an intentionally chosen location. We opted to
4 E. FEIN AND C. RIOS
1.2 The Event
Once our funding had been confirmed, we sent official invitations to the
community of scholars with whom we had been planning the event.1
Each participant was asked to prepare a twenty-minute presentation, and
invited to consider the following questions:
Conceptual framework: What do you understand yourself to be looking
at, or looking for, or looking through, in your work? How do you define
terms like “autism” and “culture” in your own work? What models of
person, society, and the relationship between them inform your work?
Method: How do you go about finding out what you find out, and how
does that affect what you find? What research paradigms do you use in
your investigations? What challenges have you run into and how did you
address those challenges?
Findings: What have you found out about autism, its social, cultural,
and political contexts, and the relationship between the two?
Each presenter was also assigned a discussant, and some time for dis-
cussion of their work, adding up to about an hour in total. The end of
6 E. FEIN AND C. RIOS
each day was capped with a summative discussion, the goal of which
was to identify and track emergent themes. The entirety of the confer-
ence was filmed, and the videos are available to view at the Society for
Psychological Anthropology Vimeo channel. These recordings became
an important part of the workshop methodology, as it allowed us both to
make the event available to a wider audience and also to revisit particu-
larly thought-provoking moments as we were preparing this volume.
Over four days of paper presentations, lively discussions, and an out-
reach event to the broader scholarly and clinical community of Rio de
Janeiro, we grappled with our own differences in position and perspec-
tive, struggling over language barriers, unfamiliar sets of assumptions, jet
lag, and the human tendency to cling to the familiar when disoriented.
We were all, on some level, differently abled at this event than we were
accustomed to being, whether this was because we were working in a
foreign location, as was the case for the visiting North American schol-
ars, or working in a non-native language, as was the case for the hosting
scholars. In working through our own understandings and misunder-
standings of each other, we generated new understandings: of the rela-
tionship between political systems, cultural models of self and social life,
and individual lived experience. We did more than talk, and listen, trying
desperately to fit everything we wanted to say into the number of hours
we had allotted; we guided each other through explorations of the Rio
streets at night, we danced to samba music together and shared meals
and long walks through gardens heavy with branches. We took a trip to
the Museum of Images of the Unconscious, founded by the pioneering
Jungian psychiatrist Nise da Silveira and honoring her rejection of prim-
itive electroshock and lobotomy in favor of expressive art therapies. We
climbed the winding stairs of the Hotel e Spa da Loucura (Hotel and Spa
of Madness), adorned with elaborate graffiti murals, where clients experi-
ment with art, music, and theater as means of symbolic healing.
The final day of the conference ended with a meeting to discuss the
form this publication would take. From the beginning, we agreed that
we wanted to produce a publication that would capture some elements
of the experience we had just shared. Particularly, we wanted to pre-
serve both its dialogic character and its element of surprise. As we talked,
we threw words and phrases up on a white board, trying to characterize
where we’d been and where we hoped to go: Community. Decentering.
Representation of togetherness. Collision. Conflict. Psychic connection.
1 INTRODUCTION 7
1.3 The Volume
The volume aims to capture the unique nature of this inter-cultural con-
versation, as well as to carry it forward. We invited participants to form
international teams and work together on collaborative pieces, and did
our best to set up groups of chapters and commentators that spanned
across both geographic and disciplinary territories. The volume itself
is structured as a continuing conversation: it contains individual stand-
alone pieces that can be read in isolation; however, each section also con-
tains a response piece from a discussant, synthesizing the themes of that
section, and the volume also contains two commentaries by participants
on the event as a whole.
The first section of the volume, “Political Histories of Autism”
consists of two comparative, collaborative essays examining autism
and neurodiversity in the context of psychiatric reform movements
in the US, Italy, and Brazil. Rossano Cabral Lima, Clara Feldman,
Cassandra Evans, and Pamela Block draw on their many years of stud-
ying autism and disability in the United States and Brazil to chronicle
post-deinstitutionalization efforts to advocate for the recognition of
the full humanity and personhood of autistic people. In both coun-
tries, schisms have formed between groups that share this common
goal. This chapter compares how these tensions have taken form within
the United States and Brazil, in the context of each country’s particu-
lar and “radically different political and economic histories, health sys-
tems, conceptions of health, and ideals about the relationship between
individuals and the state” (Lima et al., this volume). M. Ariel Cascio,
Bárbara Costa Andrada, and Benilton Bezerra Jr. also take up the ques-
tion of psychiatric reform—this time in Italy and Brazil—looking at how
the biologically based and diagnosis-specific approaches once rejected
by psychiatric reformers are now embraced by a new wave of critics to
post-reform policies. In his discussant remarks, Francisco Ortega exam-
ines the presence of polarizing conflicts throughout these two compar-
ative case studies, observing how families within these systems model
pragmatic practices of integration.
The second section of the volume focuses on issues of “Voice, Narrative
and Representation.” The section begins with Michael B. Bakan exploration
of the question: what does it mean to be an ethnomusicologist of autism?
The piece calls for, and exemplifies, a form of appreciative listening, sur-
rounding and foregrounding an essay written by a musician diagnosed with
1 INTRODUCTION 9
1.4 Broader Themes
The goal of this volume is to contextualize autism within a range of
socio-political contexts, by illuminating the historical, cultural and eco-
nomic circumstances that lead to particular conceptualizations of autism
and exploring the impact of these conceptualizations on the daily lives
of those affected. The papers in this volume thus move beyond what
Solomon and Bagatell (2010) have criticized as a tendency toward
“less and less attention in autism research to phenomena that cannot
be studied at the neurobiological or molecular level, such as human
experience, social interaction, and cross-cultural variation,” (2) instead
examining autism in the context of politics, economics, aesthetics, and
citizenship. Pieces in this volume critically interrogate the construction
of autism as both a subjective and objective category, while seeking to
remain grounded in the lived experience of people for whom this cate-
gory organizes access to much-needed services, and/or provides a deeply
meaningful way to make sense of life experiences. We attend to the his-
torical, economic, and socio-political conditions that hinder or foster
such experiences. In doing so, we seek to elucidate some of the com-
plex and contingent ties between arenas too often oversimplified as “the
global” and “the local” (Bemme and D’souza 2014). Authors in this
volume engage with the ways in which autism spectrum conditions—
of all sorts, including the conditions under which autism can emerge
as a coherent category—travel through different borders and contexts.
They grapple with education and public health structures, self-advocacy
and parent activism, the entanglement between experience and psychi-
atric knowledge/expertise, and the various forms of re-presentation and
authorship afforded by these conditions.
At the heart of all of these processes is the ongoing work of meaning-
making, and the works in this volume all engage with the question of
meaning and its negotiations across a wide variety of contexts. The chap-
ters by Cascio et al. and Lima et al. compare culturally and historically
Another random document with
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Samuel Chase,
William Paca,
Maryland.
Thomas Stone,
Charles Carroll, of Carrollton.
George Wythe,
Richard Henry Lee,
Thomas Jefferson,
Virginia. Benjamin Harrison,
Thomas Nelson, jr.,
Francis Lightfoot Lee,
Carter Braxton.
William Hooper,
North Carolina. Joseph Hewes,
John Penn.
Edward Rutledge,
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South Carolina.
Thomas Lynch, jr.,
Arthur Middleton.
Button Gwinnett,
Georgia. Lyman Hall,
George Walton.
Resolved, That copies of the Declaration be sent to the several
assemblies, conventions, and committees or councils of safety, and to
the several commanding officers of the Continental Troops: That it
be PROCLAIMED in each of the United States, and at the Head of the
Army.—[Jour. Cong., vol. 1, p. 396.]
Articles of Confederation.
ARTICLES OF CONFEDERATION.