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DECEMBER 2020 VOLUME 22 NUMBER 2 Health and Human Rights Journal 85
Health and Human Rights Journal
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Autonomous Health Movements: Criminalization,
De-Medicalization, and Community-Based Direct
Action
N B
Abstract
is paper proposes the concept of autonomous health movements, drawing on an analysis of harm
reduction in the United States and self-managed abortion globally. Harm reduction and self-managed
abortion appear in the professional literature largely as evidenced-based public health strategies, more
than as social movements. However, each began at the margins of the law as a form of direct action
developed by activists anchored in social justice movements and working in community contexts
independent of both state and institutional control according to a human rights perspective of bodily
integrity and autonomy. An analysis of the history and dynamics of harm reduction and self-managed
abortion as social movements underlies the proposed framework of autonomous health movements, and
additional potential examples of such movements are identied. e framework of autonomous health
movements opens up new pathways for thinking about the development of autonomous, community-
based health strategies under conditions of marginalization and criminalization.
N B, PhD, is a sociologist and Professor at Brooklyn College, City University of New York, USA.
Please address correspondence to the author. Email: nbraine@brooklyn.cuny.edu.
Competing interests: None declared.
Copyright © 2020 Braine. is is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial
License (http://creativecommons.org/licenses/by-nc/4.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any
medium, provided the original author and source are credited.
N. Braine / general papers, 85-97
86 DECEMBER 2020 VOLUME 22 NUMBER 2 Health and Human Rights Journal
Health and health care have increasingly been a lo-
cus of social movement action in the late th and
early st centuries, oen mobilizing a language of
human rights. e health social movements that
have been most visible since the s have orga-
nized around particular disease constituencies and
access to care, and have forced signicant changes in
institutional practices. However, during this same
time period, activists working in domains not gen-
erally considered “health social movements” have
engaged in direct action to create de-medicalized,
community-based practices with sucient reach
and eectiveness to visibly aect health statistics
and receive scientic validation. is is particu-
larly noteworthy since this work has been done in
highly stigmatized, oen criminalized, contexts—
locations where autonomous movements, based
outside political parties and other institutional
systems, may be more comfortable than service
providers. While these movements demand policy
change, their core practices enable autonomy and
self-determination for marginalized populations
regardless of state or institutional action. ese
movements challenge us to recognize the role of so-
cial movements and direct action in the creation of
autonomous community-based practices that have
transformed health risks in highly marginalized
contexts.
is paper will analyze harm reduction (HR)
in the United States and self-managed medication
abortion (SMA), primarily in Latin America, as
forms of collective action that emerge from larger
social justice movements to respond to particular
health issues in marginalized, criminalized con-
texts. Organized action around SMA is clearly
anchored within feminist movements, and there is
a globally evolving set of shared practices to assist
women with the use of medication for abortion
in contexts of limited access. HR in the United
States, specically syringe exchange and overdose
prevention, initially emerged from within social
movements that were not primarily concerned with
drug use, and went on to develop multiple practices
anchored in drug user autonomy and critical analy-
ses of medical institutions and criminalization. In
both cases, activists developed practices that were
simultaneously radical and pragmatic to empower
people to autonomously manage their health in
contexts where the primary risks result from stigma
and law. e work of these movements has entered
the literature as evidence-based public health, oen
with little attention to the processes through which
activists developed community-centered practic-
es anchored in the right to bodily autonomy and
self-determination. I will use the common elements
of these two movements to propose the concept of
autonomous health movements as a framework for
thinking about certain forms of collective action
at the intersection of criminalization, health, and
human rights. I believe that this theoretical frame-
work has the potential to shi our thinking about
forms of direct action within social movements
and the development of human rights-centered,
evidenced-based public health in criminalized
contexts.
It is important to note that the phrase “harm
reduction” has been adapted and used across a
range of locations, including by medical providers
who support women with SMA under highly re-
strictive conditions. While this reects the power
of the ideas and practices of activists globally who
coined the term to describe street-based work with
illicit drug users—activists whose work is central to
this paper—the use of the term within more insti-
tutional settings creates linguistic ambiguities. For
the purposes of this paper, HR (capitalized) will be
used to refer to the US movement that emerged in
the late s and early s with regard to users of
illicit drugs. In some countries, drug-related harm
reduction was supported by the state as a public
health measure, which would aect the dynamics
discussed here. For that reason, the analysis in this
paper will focus on HR in the United States.
Overview of the literature on HR and SMA
e majority of the research done with HR and
SMA has focused on evaluating the eectiveness of
the practices as health interventions, rather than on
the social organization of the work. is research
has been done largely by scientists allied with or
actively involved in the movement who collaborate
N. Braine / general papers, 85-97
DECEMBER 2020 VOLUME 22 NUMBER 2 Health and Human Rights Journal 87
with (other) activists to validate movement practic-
es, understand the needs and experiences of people
who access the practice, or otherwise answer ques-
tions of shared interest. e largely epidemiological
focus of this work examines the experiences of
people who engage with the practice, whether drug
users at syringe exchanges or people who con-
tact an abortion hotline, and leaves implicit how
these practices were developed by activists under
conditions that range from provisional legality to
outright clandestinity. I have participated in this
at times; a paper describing the drug user networks
that distributed sterile needles from an under-
ground syringe exchange addressed an issue of core
interest to the collective running the exchange as
well as to me as a sociologist funded by the National
Institutes of Health, without substantive discussion
of the exchange itself as a long-term activist collec-
tive engaged in clandestine action. e underlying
disciplinary and methodological structures of re-
search tend to direct attention to either the work of
activists or the experience of persons who engage
with the movement practice. e predominant
focus on the latter creates valuable literatures that
scientically validate social movement-generated
practices and enable both political and medical
discourses about evidenced-based medicine, yet
the work of creating and maintaining these prac-
tices remains understudied. While disciplinary and
methodological explanations may seem limited,
the public health literature recognizes the role of
movement organizations, and activists make no
eorts to hide their work. It is worth noting that
the one report I am aware of that directly connects
the experiences of both SMA activists and women
seeking abortions was self-published by an activist
collective (https://womenhelp.org/en/page//
el-aborto-con-medicamentos-en-el-segundo-tri-
mestre-de-embarazo).
e relative lack of research on HR and SMA
as social movements is particularly noticeable
given the identities and self-representations of
activists and collectives themselves. Organiza-
tions providing education and assistance with
SMA unambiguously represent themselves as
feminist, including lesbian-feminist, on websites
(for example, https://socorristasenred.org) and in
printed materials, and are referenced as such in the
public health literature. In Latin America, SMA
collectives integrate feminist political education
within workshops and materials about the safe use
of medication for abortion. In the United States,
syringe exchange emerged largely as an outgrowth
of AIDS activist and anarchist formations, and a
visible social movement identity continues today
among some HR workers and organizations de-
spite an overall shi to nongovernmental service
organizations. e US-based National Harm
Reduction Coalition’s description of the principles
of harm reduction states, “Harm reduction is a set
of practical strategies and ideas aimed at reducing
negative consequences associated with drug use.
Harm Reduction is also a movement for social jus-
tice built on a belief in, and respect for, the rights
of people who use drugs.” is statement brings
together the dual nature of both HR and SMA as
movements rooted in struggles for justice that
develop pragmatic, autonomous practices that en-
hance self-determination and address stigmatized,
oen criminalized, health issues.
For this analysis, I will draw on the existing
literature on HR and SMA, supplemented by my
own observations and experiences from decades
of both activism and research in street-based HR.
e social movement literature on HR is even more
limited than that on SMA, and my analysis is based
in part on my own engagement with the movement.
My involvement in HR ranges from membership in
an unauthorized needle exchange collective to over-
seeing research funded by the National Institutes of
Health, and includes attendance at the majority of US
harm reduction conferences and syringe exchange
conventions over the past years. My activist and
professional history does not constitute research
data, but I draw on it to construct the analytical
arguments made in this paper. e organizational
structure of HR in the United States has largely
evolved into a system of nongovernmental service
organizations in ways that expand access but limit
the potential for social movement-focused research.
is paper presents an analysis that emerges
from thinking across movements; a detailed de-
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88 DECEMBER 2020 VOLUME 22 NUMBER 2 Health and Human Rights Journal
scription of either HR or SMA is beyond the scope
of this paper. However, I will provide a brief over-
view of each movement as a basis for an analysis
of their commonalities and to develop the concept
of autonomous health movements. In the nal sec-
tions of the paper, I will briey suggest some other
examples of autonomous health movements as part
of a discussion of the utility of the framework for
thinking about social movements, public health,
marginalization, and human rights.
Harm reduction
While HR is oen understood in terms of particu-
lar forms of outreach to and services for people who
use drugs, as a movement it is anchored in an anal-
ysis of the social and political marginalization of
people who use drugs and their communities. HR
emerged as a community-centered response to HIV
among people who inject drugs, initially focused
on providing sterile injection equipment as a way
to prevent the spread of HIV. e rst documented
needle exchanges were created by the junkiebonden,
or drug user unions, in the Netherlands in the early
s in response to hepatitis B, and the strategy
spread globally in response to the AIDS epidemic.
In the United States, needle exchanges were creat-
ed largely by HIV/AIDS activists who had a wide
range of personal drug use histories and practices
but were not, for the most part, organizing around
identities as people who use drugs. While explicit
human rights language is rare among US activists,
a commitment to self-determination was central to
evolving HR practices, at times framed as “nothing
about us without us” (a phrase shared with disabil-
ity rights activists).
e second HR practice to emerge on a wide
scale was overdose prevention, which began in the
late s and quickly became more broadly ac-
cepted in the United States than syringe exchange.
Naloxone is a medication—long used by emergency
medical services—that interrupts the action of
opiate drugs and thereby reverses an overdose.
Overdose prevention involves distributing nal-
oxone to people who use drugs and community
members, along with a brief training on how to
recognize an overdose and use the medication to
interrupt it. e practice began when a Chicago
syringe exchange program started to hand out nal-
oxone to program participants and teach them how
to use it; this practice then spread to other cities.
Initially, providing naloxone in this manner was a
violation of prescription laws, although this may
not have been widely known outside core activist
networks.
e emergence and spread of HIV coincided
with the escalation of the United States’ War on
Drugs, creating a context of extreme criminaliza-
tion within which activists created the rst syringe
exchanges. It is important to note that the War
on Drugs—and US drug policy overall—functions
primarily as a policy tool for racialized criminaliza-
tion, targeting African American and other racially
marginalized communities more than drug users
per se. is entrenched political context for drug
law amplied the stigma of HIV/AIDS and the
centrality of criminalization over public health,
drawing on long-standing representations of drug
users as dangerous residents of urban ghettos. In
US cities, the presence of a syringe exchange in
the s was more strongly associated with AIDS
activism and the prevalence of HIV in LGBT
communities than with measures of drug use or
HIV prevalence among people who inject drugs.
is highlights the role of larger movements in the
genesis of syringe exchange and HR, as the severity
of the local epidemic among people who use drugs
does not appear to be the driving factor. It also
draws attention to the invisibility of HR as a social
movement, despite its connection to forms of HIV/
AIDS activism that have been central to the study
of health social movements.
It is dicult to overstate the radical nature of
HR in the United States in the late s and the
s. A relatively objective measure of this can be
seen in the extended restrictions on federal fund-
ing for syringe exchange programs despite a near
endless succession of studies demonstrating their
eectiveness as a public health strategy. e rad-
ical stance of HR as an emerging social movement
was to develop a community practice centered on
people who use drugs as active agents of public
N. Braine / general papers, 85-97
DECEMBER 2020 VOLUME 22 NUMBER 2 Health and Human Rights Journal 89
health, independent of state control or institutional
supervision. Syringe exchange positions injection
drug users as people who can and will organize
their use of (illicit) drugs in ways that eectively
limit the spread of blood-borne disease. Overdose
prevention again situates people who use drugs and
members of their communities as valued actors
who can recognize and eectively intervene in a
health crisis through the autonomous use of a med-
ication previously controlled by credentialed health
professionals. is disrupted dominant cultural,
medical, and political understandings of people
who use illicit drugs as primarily criminal or, at
best, severely dysfunctional. e creation of a set
of community-based, autonomous practices that
locate stigmatized persons as key actors in relation
to their own health and self-determination is also
central to the movement for self-managed abortion.
Self-managed abortion
While the contemporary movement for SMA
emerged in the st century, abortion itself has
long been an area of autonomous health action and
self-determination among women. To choose some
well-documented examples, the feminist health
movement of the s and s taught women
how to perform “menstrual extraction” and other
de-medicalized approaches to abortion in the rst
trimester, and the Jane Collective in Chicago may
be the most direct predecessor to contemporary
activism. As a movement, SMA combines online
feminist telemedicine services and activist-driven
community-based strategies to assist women with
the use of widely available medication.
e standard medical abortion protocol uses
two medications—mifepristone and misoprostol—
but misoprostol alone is eective and more readily
available. Misoprostol is a medication for gastric
ulcers that has obstetric uses, including abortion
and treatment for postpartum hemorrhage; the
label warns against use by pregnant women and
lists miscarriage as a side eect. Women in Bra-
zil began to use misoprostol to induce abortion
in meaningful numbers in the s, leading to a
measurable decrease in complications from unsafe
abortion. e practice spread in contexts with
limited legal access to abortion, despite diculty in
obtaining accurate instructions for use. Starting
in the s, feminist websites, hotlines, and other
education and support strategies began to provide
women with accessible and trusted information on
how to use the medication, which has increased
women’s acceptance of SMA. As with HR, the
practices developed by SMA activists are used by
women who may not themselves identify with the
movement.
Feminist activism for SMA began at the mar-
gins of the medical system and has since developed
fully de-medicalized practices that have spread
globally. In , Women on Waves began to oer
abortions on board a ship that would anchor in
international waters near countries with highly
restrictive laws. In the early s, Women on
Waves initiated a telemedicine service, Women on
Web, that provides online consultations and sends
medication by mail. Women on Waves and Women
on Web were founded by a doctor and both operate
technically within, although at the margins of, in-
stitutional systems of medical practice. Additional
online telemedicine platforms have emerged since,
all of which medically prescribe and then mail
standard abortion medications.
Since then, a series of more autonomous ini-
tiatives developed outside institutional medical
systems. In , a collective in Ecuador launched
the rst autonomous safe abortion hotline, pro-
viding information on how to use medication for
rst-trimester abortions, and hotlines soon ap-
peared in other Latin American countries. Around
the same time, a practice of acompañamiento,
or accompanying women through the abortion
process, developed in Mexico in both Guanajuato
and Mexico City and subsequently spread in Latin
America. In some African contexts, community
health workers teach the use of misoprostol for the
management of both postpartum hemorrhage and
rst-trimester abortion, using the legitimacy of
the former to obscure the centrality of the latter.
Variations on the strategy of a hotline have been
implemented globally, including in Indonesia, Po-
land, ailand, and multiple sub-Saharan African
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90 DECEMBER 2020 VOLUME 22 NUMBER 2 Health and Human Rights Journal
countries; by , at least community-based
projects operated globally.
HR and SMA reect dierent, though related,
circumstances and dynamics of marginalization
and collective action. Both movements advocate
for systemic institutional change (for example, full
access to abortion on demand and fundamental
changes in drug policy) but the primary focus of
their work is the development of autonomous health
practices that enhance self-determination. In each
case, activists faced a health crisis created by stigma
and criminalization and responded with commu-
nity-level direct action that brought professionally
controlled knowledge and technology into lay use.
Syringe exchange programs combine community
education about disease transmission and injection
hygiene with the distribution of a medical technol-
ogy (syringes) that was already in use but dicult
to access. Overdose prevention and SMA both have
community education components that centrally
involve the de-medicalization of pharmaceuticals
as a technology for use by ordinary persons with no
professional training. Both movements developed
practices that enable people to engage in autono-
mous health action (for example, safe injection,
overdose prevention, and SMA) without any re-
quirement to identify with or join the movement
itself, thus separating questions of access from
those of identity or political commitment. Syringe
exchange and overdose prevention have had widely
varying levels of government involvement and legal
status in dierent parts of the world, although in
the United States they emerged from social move-
ment networks working at the margins of the law.
At this writing, abortion globally is almost univer-
sally regulated through criminal law, and SMA has
not been legalized (or decriminalized); the organi-
zations that provide education and support have
clear roots in feminist organizing.
Autonomous health movements
Contexts for emergence
Based on these two examples, I argue that auton-
omous health movements may emerge within
societal contexts that share four important charac-
teristics. First, there is a highly stigmatized health
issue or population. HIV/AIDS in the United States
demonstrates this clearly in the emergence of a
new, initially fatal, disease that spread in stigma-
tized ways and largely among marginalized, oen
criminalized, populations. In contrast, abortion is
a common and longstanding practice that has been
criminalized in many countries, thereby creating
socially marginalized contexts that carry stigma
even for women of otherwise dominant status.
Second, the government responds to the situation
with criminalization and marginalization rather
than health care. In the United States, HIV among
people who use drugs was met with escalating
criminalization through the War on Drugs, in the
context of medical and social services systems that
largely required abstinence as a precondition to
care. Abortion continues to be restricted and crim-
inalized in much of the world, and it is only under
these conditions that hotlines and other SMA prac-
tices have emerged. e United States under the
Trump administration oers a dynamic example of
this, as interest in SMA has spread among feminist
activists as the probable demise of Roe v. Wade
becomes more proximate. ird, the criminaliza-
tion primarily aects marginalized populations,
as those with resources can oen access privatized
solutions. is has long been true for abortion, as
women with resources obtain assistance from pri-
vate providers or travel to locations where abortion
has been broadly legalized. Similarly, drug users
with socioeconomic resources are oen able to
obtain sterile syringes or to access various forms of
care without rst becoming abstinent, despite the
overall criminalization of drug use and users.
Fourth, the health issue is of concern to an
existing social movement, which then provides the
context within which activists develop a de-med-
icalized, community-based response anchored in
the principles of bodily autonomy and self-deter-
mination. is last element appears to be crucial,
as a variety of health issues meet the rst three
criteria but autonomous health movements do not
appear to develop unless a larger social movement
provides the initial context and resources for the
emergent autonomous health movement. e rst
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DECEMBER 2020 VOLUME 22 NUMBER 2 Health and Human Rights Journal 91
HR programs in the United States were created
within the context of a militant response to the
AIDS epidemic, although both criminalization and
drug-related health issues were common and long-
standing among drug users. As noted previously,
syringe exchange programs initially had a stronger
statistical association with the level of HIV among
gay men, and associated AIDS activism, than with
the level of HIV among drug users, highlighting the
importance of the context and resources provided
by a larger social movement. Abortion outside the
medical system is hardly a new phenomenon, but
the reemergence of feminist movements enabled a
shi toward organized, publicly accessible, move-
ment-based assistance (for example, s feminist
self-help, the Jane Collective, and, more recently,
SMA). In each of these cases, activists working
within a larger movement began to develop direct
action practices to address a criminalized health
issue, leading to the formation of independent
organizations and movements. Attention to the
centrality of the role of a larger social movement
in the emergence of autonomous health movements
leads to consideration of autonomous health move-
ments themselves as both practices and movements.
Characteristics of autonomous health
movements
Autonomous health movements share certain
characteristics that are connected to, but somewhat
independent of, their conditions of emergence.
ree characteristics appear to be conceptually
central, par ticularly in relation to the “autonomous”
element of autonomous health movements; I will
rst list these characteristics and then develop
them in subsequent paragraphs. One, the health
practice involves de-medicalization through com-
munity use and control of medical knowledge and
technology. Two, this process of de-medicalization
results in signicant shis in power relationships
between marginalized, oen criminalized, con-
texts and populations and mainstream medical
institutions in ways that enhance the autonomy and
self-determination of the marginalized. And three,
activists within autonomous health movements
demonstrate a willingness to work at the edges of
or outside the law when necessary.
e de-medicalization of medications,
technologies, and knowledge sits at the heart of
autonomous health movements, enabling their
autonomy from medical systems and develop-
ment of eective community-based practices. e
clearest illustration of this may be various forms of
autonomous abortion, whether contemporary use
of medication or earlier community-based feminist
practices. Safe abortion outside the medical system
brings together the dierent elements of de-med-
icalization in a straightforward way; women take
control of knowledge and technologies that enable
safe abortions, which directly empowers them in
relation to medical institutions and enhances their
autonomy and self-determination. Perhaps less ob-
viously, HR de-medicalizes important technologies
(such as sterile syringes and naloxone) that people
who inject drugs need to autonomously manage
their own health and bodily self-determination
while using drugs, reducing their vulnerability to
medical (and other) institutions that typically stig-
matize and marginalize users of illicit drugs. More
radically, HR positions active users of illicit drugs
as valued members of their communities, fully ca-
pable of health-sustaining action on their own and
another’s behalf. Similarly, SMA positions women
as persons with the knowledge and authority to
make decisions about their own bodies, sexuality,
and reproduction, which continues to be a contest-
ed claim even in contexts where abortion is legal.
e combination of criminalization and
stigma, on the one hand, with strategies of de-med-
icalization, on the other, can locate the work of
autonomous health movements at the borders of
the law. Again, abortion outside the medical sys-
tem provides clear examples of this in the work of
earlier feminists and in contemporary SMA, which
has been criminalized in much of the world. In the
early days of syringe exchange in the United States,
many programs were of, at best, ambiguous legal
status, and many were outright illegal, sometimes
for years. New Jersey did not legalize syringe ex-
change programs until , despite relatively high
rates of injection-related HIV. Syringe exchange
programs in New York State were “legalized” in
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92 DECEMBER 2020 VOLUME 22 NUMBER 2 Health and Human Rights Journal
when the state health commissioner declared
a state of emergency; the declaration had to be reis-
sued annually until the early s, when the state
legislature legalized possession of up to syringes
for personal use. Similarly, naloxone distribution
for overdose prevention began in at least technical
violation of prescription laws.
rough their willingness to work at the
edges of the law, autonomous health movements
challenge mainstream cultural and public health
assumptions that medical safety lies within institu-
tional systems. ese movements take medications
and other technologies out of institutional settings
and train ordinary people to safely use them in ways
that had previously been exclusively the purview of
professionals. SMA and overdose prevention are ob-
vious examples of this, but the idea that people who
inject drugs could consistently inject safely—reduc-
ing bacterial infection and viral transmission—was
largely unimaginable to medical and public health
ocials prior to the work of syringe exchanges. e
collaborative work between autonomous health
movements and aliated or allied scientists to
prove the ecacy of their community-based prac-
tices provides traditional scientic evidence that
medical safety can exist within de-medicalized,
community-controlled practices and contexts.
is scientic validation of social movement prac-
tices then enables a discourse of evidence-based
medicine and public health. However, it must be
emphasized that these practices are developed and
sustained as autonomous community action, not as
“second best” or provisional pending integration
into institutional systems.
e legal risks taken by activists in autono-
mous health movements elicit obvious questions
about the social and political commitments under-
lying the willingness to engage in what, in certain
locations, could be considered routinized, ongoing
civil disobedience. It is not possible to understand
the risks taken by SMA or early HR activists with-
out attention to the larger social movements that
provided the contexts within which these autono-
mous health movements emerged. e Ecuadorian
activists who created the rst abortion hotline were
committed feminists and members of a youth-run
nongovernmental organization focused on issues
of gender and sexuality. e safe abortion hotlines
and acompañamiento collectives that subsequently
formed in other Latin American countries also
emerged from networks of feminist, oen lesbian,
activists. Early syringe exchange programs in the
United States were oen linked with AIDS activist
organizations or anarchist networks, and the HR
movement that emerged through the s has been
consistently driven by a strong social justice analy-
sis that provides the framework within which risks
are assessed and taken. Based on these examples,
I argue—or at least hypothesize—that autonomous
health movements emerge from within larger so-
cial movements that provide the initial analytical
frameworks for the development of autonomous
practices (for example, hotlines and street-corner
syringe exchange), as well as the motivation to ac-
cept legal risk.
Autonomous health movements and human
rights
e practices of these movements lie within a
human rights framework of bodily autonomy and
self-determination, although, to paraphrase Ali-
cia Yamin, they may use civil disobedience as a
strategy for the epistemic disobedience necessary
to address health problems created by law and
policy. Autonomous health movements refuse
to remain within a state- or institution-focused
paradigm, using de-medicalization and direct ac-
tion to create eective health practices outside of
institutional control. HR and SMA oer immediate
strategies for action without waiting for state pol-
icies to change, challenging marginalization and
isolation as well as criminalization, and recogniz-
ing that bodily autonomy and self-determination
for marginalized communities require engagement
and resources. SMA activists do more than hand
out pills and instructions; they create pathways for
communication and support around the manage-
ment of unwanted pregnancy as a moment within
the lives and communities of pregnant persons.
Similarly, HR activists do more than hand out
syringes and naloxone, instead creating spaces
within which socially stigmatized drug users are
N. Braine / general papers, 85-97
DECEMBER 2020 VOLUME 22 NUMBER 2 Health and Human Rights Journal 93
valued community members and health educators.
ese movements prioritize autonomous forms of
direct action rather than battles over state policy
and obligation, which may render them less visible
as movements engaged in a struggle for human
rights. In practice, autonomous health movements
step outside state- and institution-centered debates
around policy change, political pragmatism, and
technocratic development goals.
High-prole confrontation is oen key to the
visibility of a social movement, and I believe that
part of why autonomous health movements have
been largely overlooked as movements comes from
the dynamics of low-prole direct action rather
than visible challenge. In some US cities, the ac-
tivists who intentionally provoked an arrest for
handing out syringes, in order to argue in court
that their actions were “necessary to preserve life,”
were AIDS activists who supported HR but were not
engaged in ongoing outreach, and those arrests did
not occur at syringe exchange sites. Arguably, they
were part of the larger movement that “birthed” the
autonomous health movement but not part of the
autonomous health movement itself, as they were
not involved in ongoing HR work. Within SMA,
an abortion hotline is unlikely to formally lead a
campaign to change the legal status of abortion,
but hotline activists may well be involved through
other feminist organizations. e dynamics of
deliberate, visible confrontation are, in reality, not
conducive to developing trust and accessibility
among marginalized people in a criminalized con-
text in which encounters with authority are to be
avoided as much as possible. e collective action
frameworks and community-oriented strategies
central to the work of both SMA and HR go beyond
questions of state repression or obligation and em-
brace an understanding of autonomy anchored in
shared connection and support.
Autonomous health movements in a broader
perspective
While I have developed the concept of autonomous
health movements around the examples of HR
and SMA, these are clearly not the only potential
cases. e practice of safer sex among gay men and
MSM was created and initially circulated by gay
male activists as an act of liberation and communal
self-determination at a time when sodomy was still
criminalized in parts of the United States and when
there were credible fears about the escalating mar-
ginalization of populations identied with AIDS.
While the condom is not a medical technology,
there is a profound de-medicalization in the direct
action of creating practices to control the spread of a
new, terrifying disease. Much of the health organiz-
ing done by sex worker activists, including but not
limited to HIV, falls within the general frameworks
described here and is anchored in decriminaliza-
tion, bodily autonomy, and self-determination
within the framework of collective action. Moving
beyond HIV, the work of No Más Muertes (No More
Deaths) in the US-Mexico border region emerged
as a response to the public health crisis created by
the escalating criminalization of migration, which
forced migrants into the most dangerous deserts of
Arizona. Activism surrounding transgender iden-
tity and bodily autonomy may well function as an
autonomous health movement in contexts where
trans identities and access to medical care are re-
stricted or criminalized.
I am reluctant to set hard boundaries around
autonomous health movements at this stage of
conceptual development, but the characteristics
outlined previously set some criteria for what does
and does not lie withi n the framework. Health socia l
movements organized around illness identities that
demand inclusion and change in institutional sys-
tems are not autonomous health movements. Some
potential ambiguities arise in relation to self-help
and consumer movements, and here a return to the
dening characteristics and the earlier discussions
of HR and SMA oer some guidance. Autonomous
health movements develop a practice that addresses
a health issue, and they make the practice accessi-
ble to others without any requirement to identify
as part of the movement. For example, feminist
self-help groups of the s may have assisted one
another with menstrual extractions in the rst
trimester of pregnancy, but the requirement to be
an ongoing group member creates an internal prac-
tice, which is very dierent than the explicitly open
N. Braine / general papers, 85-97
94 DECEMBER 2020 VOLUME 22 NUMBER 2 Health and Human Rights Journal
work of the Jane Collective during the same time
period. Many contemporary consumer movements
would not t well within the autonomous health
movement framework, as they focus primarily or
exclusively on institutional change rather than on
autonomous practices and do not operate in a crim-
inalized context. Marijuana buyers’ clubs, however,
are much closer to autonomous health movements,
since they provide access to an oen criminalized
substance on the basis of a medicinal use and may
have wide peripheries of “membership.”
Autono-
mous health movements as conceptualized in this
paper occupy a particular location within the larger
domain of health and social justice movements,
one characterized by autonomous health work as a
form of direct action.
Locating certain practices as autonomous
health movements expands and reorients our
understanding of work that has largely been posi-
tioned as innovative and controversial public health
measures, not as direct action by social movements.
is is particularly true for HR but also to some
extent for SMA, both of which appear in a public
health literature that at least partially decontextu-
alizes the experiences and processes being studied.
In both cases, the eectiveness of a practice cannot
accurately be understood independent of the work
of the activists and movements that create contexts
through which individuals realize the practices
studied and validated by epidemiologists. e role
of activists is visible within much of the epide-
miological data, although primarily as sources of
information (for women, drug users, and principal
investigators) or locations for data collection, but
this does not in itself enable an understanding of
how these projects and practices were developed
and how they are sustained. ese absences are
particularly notable given the self-representation of
the organizations and the multiple, movement-con-
nected social locations of many of the scientists and
contributors to the published literature. However,
from the perspective of activists, collaboration with
epidemiologists directly advances the work of the
movement, while research on social movements
may be less obviously benecial.
e conceptual framework of autonomous
health movements has the potential to elicit new
questions and directions for research in health,
human rights, and social movements, particularly
in relation to innovation and strategies to move
beyond existing models. It challenges us to look
for ways that social movements can sidestep the
state or large institutions and how work may be
divided within a eld of related activity, with some
elements specializing in policy while others engage
with low-prole direct action. An understanding
of direct action as a potential health strategy opens
up questions about the contexts and processes that
lead to signicant innovations at the intersections
of human rights, health, and criminalization. e
role of larger movements in fostering the emer-
gence of autonomous health movements directs
attention to how social movements can initiate, or
incubate, health practices that break with previous
assumptions and move beyond established models
for human rights-based approaches to health. In
addition, the collaboration among activists and
scientists that leads to scientic validation of di-
rect action practices may encourage new ways of
thinking about relationships between marginal
communities and public health (or human rights)
professionals.
Conclusion
As I nish this paper, in New York City in June
, the United States is immersed in simultane-
ous insurrection and pandemic, as protests against
racist police systems erupt in cities still under
quarantine from COVID-. In this moment, ac-
tivists are intrinsically working at the intersections
of public health and collective action, adapting
health guidelines to the ever-emergent processes
of street protest. Some practices reect creative
innovation, such as the use of rhythmic clapping
in place of chanting to allow collective expression
without the widespread expulsion of potentially
virus-laden droplets from hundreds or thousands
of people chanting. Marches with evolving routes
reduce the health risks of both COVID- and
N. Braine / general papers, 85-97
DECEMBER 2020 VOLUME 22 NUMBER 2 Health and Human Rights Journal 95
encounters with the police, as highly mobile and
low-density protests wind through the streets in
unpredictable patterns. It is a powerful reminder
that social movements not infrequently work in
contexts where health risks must be managed as an
intrinsic contextual element of organizing and ac-
tion, troubling the theoretical boundaries around
“health movements” and the relationship between
health and human rights.
e coming decades are likely to bring so-
ciopolitical turbulence and emergent health risks
as climate patterns shi, populations of humans
and other life forms migrate, and social systems
scramble to respond in ways that range from au-
thoritarian to liberatory. Environmental changes
and associated migrations alone have the poten-
tial to create multiple, shiing contexts in which
criminalization, health, medical technologies, and
social movements interact. It is unsurprising that
the examples of autonomous health movements
in this paper involve intersections among gender,
sexuality, and drug use, as these have long been
domains where repression and social control use
the language of health. Looking ahead, the anti-im-
migrant rhetoric that has gained power throughout
Euro-American societies in the st century situ-
ates migrants as a threat to societal health broadly
speaking and could easily be mobilized in more
targeted ways, as signaled by the rise in anti-Asian
prejudice with COVID-. e criminalization
of marginal contexts and populations has been a
central tool of neoliberalism under centrist and
right-wing governments alike and can lead to
health crises under a range of circumstances and
congurations.
e conceptual framework of autonomous
health movements expands our thinking and the
direction of our attention in relation to contexts
where stigma and criminalization create or signi-
cantly amplify health risks and the role of social
movements in forging new pathways in health and
human rights. While policy change and destig-
matization are vital, they are generally long term
projects that do not immediately reduce health risks
or enhance autonomy. e movements analyzed
in this paper demand that we recognize and work
to understand the role of social movement-driven
direct action in transforming health practices in
contexts of extreme marginalization.
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