Keywords for Health Humanities

Visit the link below to download the full version of this book:

https://medipdf.com/product/keywords-for-health-humanities/

Click Download Now

 Keywords for Health Humanities

Edited by
Sari Altschuler, Jonathan M. Metzl, and Priscilla Wald

NEW YORK UNIVERSITY PRESS New York

nyu-altschuler.indd 3 23/3/3 11:57 AM

 NEW YORK UNIVERSITY PRESS
New York
www​.nyupress​.org

© 2023 by New York University

All rights reserved

References to internet websites (URLs) were accurate at the time

of writing. Neither the author nor New York University Press is
responsible for URLs that may have expired or changed since the
manuscript was prepared.

Please contact the Library of Congress for Cataloging-in-Publication

data.

ISBN: 9781479808090 (hardback)

ISBN: 9781479808106 (paperback)
ISBN: 9781479808083 (library e-book)
ISBN: 9781479808069 (consumer e-book)

New York University Press books are printed on acid-­free paper, and
their binding materials are chosen for strength and durability. We
strive to use environmentally responsible suppliers and materials to
the greatest extent possible in publishing our books.

Manufactured in the United States of America

10 9 8 7 6 5 4 3 2 1

Also available as an e-book

nyu-altschuler.indd 4 23/3/3 11:57 AM

 Contents

Introduction: Sari Altschuler, Jonathan M. Metzl, 29. Harm: Tod S. Chambers 99

and Priscilla Wald 1 30. History: David S. Jones 103
1. Access: Todd Carmody 7 31. Human Rights: Jaymelee Kim 106
2. Aging: Erin Gentry Lamb 10 32. Humanities: Sari Altschuler 109
3. Anxiety: Justine S. Murison 13 33. Humanity: Samuel Dubal 113
4. Bioethics: Lisa M. Lee 17 34. Immunity: Cristobal Silva 117
5. Care: Rachel Adams 20 35. Indigeneity: Michele Marie Desmarais and
6. Carrier: Lisa Lynch 23 Regina Emily Idoate 120
7. Chronic: Ed Cohen 27 36. Life: Matthew A. Taylor 124
8. Cognition: Deborah Jenson 30 37. Medicine: Sayantani DasGupta 128
9. Colonialism: Pratik Chakrabarti 33 38. Memory: James Chappel 131
10. Compassion: Lisa Diedrich 37 39. Microbe: Kym Weed 134
11. Contagion: Annika Mann 40 40. Narrative: Rita Charon 137
12. Creativity: Michael Barthman and 41. Natural: Corinna Treitel 140
Jay Baruch 43 42. Neurodiversity: Ralph James Savarese 142
13. Data: Kirsten Ostherr 47 43. Normal: Peter Cryle and Elizabeth Stephens 146
14. Death: Maura Spiegel 50 44. Observation: Alexa R. Miller 149
15. Diagnosis: Martha Lincoln 54 45. Pain: Catherine Belling 152
16. Disability: Rosemarie Garland-­Thomson 58 46. Pathological: Michael Blackie 155
17. Disaster: Martin Halliwell 61 47. Patient: Nancy Tomes 159
18. Disease: Robert A. Aronowitz 64 48. Pollution: Sara Jensen Carr 162
19. Drug: Anne Pollock 68 49. Poverty: Percy C. Hintzen 164
20. Emotion: Kathleen Woodward 71 50. Precision: Kathryn Tabb 167
21. Empathy: Jane F. Thrailkill 74 51. Psychosis: Angela Woods 171
22. Environment: David N. Pellow 78 52. Race: Rana Hogarth 174
23. Epidemic: Christos Lynteris 80 53. Reproduction: Aziza Ahmed 177
24. Evidence: Pamela K. Gilbert 83 54. Risk: Amy Boesky 180
25. Experiment: Helen Tilley 86 55. Sense: Erica Fretwell 183
26. Gender: Gwen D’Arcangelis 90 56. Sex: René Esparza 186
27. Genetic: Sandra Soo-­Jin Lee 93 57. Sleep: Benjamin Reiss 190
28. Global Health: Robert Peckham 96 58. Stigma: Allan M. Brandt 193

nyu-altschuler.indd 5 23/3/3 11:57 AM

 59. Stress: David Cantor 196
60. Technology: John Basl and Ronald Sandler 199
61. Toxic: Heather Houser 202
62. Trauma: Deborah F. Weinstein 206
63. Treatment: Keir Waddington and
Martin Willis 209
64. Virus: John Lwanda 212
65. Wound: Harris Solomon 215

References 219
About the Editors 267
About the Contributors 269

vi Contents

nyu-altschuler.indd 6 23/3/3 11:57 AM

 Introduction
Sari Altschuler, Jonathan M. Metzl, and
Priscilla Wald

Musing, in the first months of a new century, on what in Lederberg’s story. But we should have. Lederberg
he called “Infectious History,” Nobel Prize–­winning was hardly alone in his prediction. Epidemiologists
microbiologist Joshua Lederberg (2000, 290) predicted, and other researchers in the field had long been fore-
“The future of humanity and microbes will likely casting what the journalist Laurie Garrett called, in
unfold as episodes of a suspense thriller that could her best-­selling 1994 book, the coming plague. And
be titled Our Wits versus Their Genes.” Lederberg was in September 2019, the annual report of the World
instrumental in defining the phenomenon that came to Health Organization (WHO), entitled A World at Risk,
be known as “emerging infections.” The term referred warned, “The world is not prepared for a fast-­moving,
to the proliferation of microbes that caused catastrophic virulent respiratory pathogen pandemic” (World
communicable disease in humans. For Lederberg Health Organization 2019, 5). Citing the catastrophic
and his colleagues, the phenomenon was not an effects of the 1918 global influenza pandemic, which
unknowable threat but a predictable effect of a kind of killed fifty million worldwide—­2.8 percent of the total
progress: an expanding global population was moving population—­the report predicted that “a similar conta-
into areas that had been un-­or sparsely inhabited by gion” would yield “tragic levels of mortality” and likely
human beings—­thus developing those spaces—­while spur “panic, destabilize national security and seriously
improvements in transportation and an increasingly impact the global economy and trade” (15).
global economy were moving goods and people rapidly Although the COVID-­19 pandemic certainly added
around the world. As these microbes encountered a new urgency to this project, our original motivations
species—­humans, hence a new food source—­they also stemmed from the insight that the pandemic made so
found a new form of transportation, enabling them to broadly palpable: that health is a site in which the social
hitchhike around the globe, perhaps mutating in the and global inequities of the world are writ large. While
process. Humans are “major engineers of biological traffic,” the morbidity and mortality rates from SARS-­CoV-­2
warned Stephen Morse, Lederberg’s colleague, referring speak loudly to racial and economic inequities world-
not only to literal transportation but also to the practices wide, those same inequities track similarly along the
through which humans produce the ideal conditions for lines of a wide range of health issues, communicable
biological growth and dispersal (Morse 1996, 24). and otherwise. Together the persistence of these ineq-
When we began our work on this volume, we did uities shows how far we are from the UN’s 1978 Declara-
not imagine we would soon find ourselves characters tion of Alma-­Ata that health is “a fundamental human

nyu-altschuler.indd 1 23/3/3 11:57 AM

 right.” The 134 nations and sixty-­four NGOs that Our convictions both that health is and should be a
signed the declaration in 1978 committed to working central topic of critical inquiry and that the humanities
toward the goal of universal access to primary health has much to offer the study of health and the practice of
care worldwide by the year 2000, the very year in medicine motivate this Keywords volume. As Lederberg
which Lederberg marked the lack of preparedness for observed, our understanding of health and our practices
a future punctuated by pandemics and other illnesses. of health care are deeply shaped by the stories we tell,
Neither the United States nor the world has come close the language we use, the histories we draw on, and the
to reaching that goal. value judgments we bring.
Despite this stagnation in health equity, we noted The idea of a keywords volume first emerged in tan-
with great interest that when the pandemic struck, dem with the field of cultural studies, in which the
many in health care and among the general public sociologist Raymond Williams, author of Keywords: A
turned to the humanities to understand a novel threat Vocabulary of Culture and Society, was a central figure. The
to global human health. History and literature became project had its origins in Williams’s feeling of estrange-
important resources for understanding global catastro- ment on his return to Cambridge University in 1945 af-
phe and addressing our new reality, especially as they ter more than four years in the army. It was as though,
instructed us about the racist and xenophobic dimen- he and a colleague who had similarly returned from
sions of pandemics past. Likewise, ethicists emerged as the war agreed, everyone around them was speaking
necessary experts, with hospitals anticipating ventila- a different language. The insight led to his 1958 field-­
tor, bed, staff, and later vaccine and treatment short- defining work, Culture and Society: 1780–­1950, and, later,
ages that would require life-­and-­death decisions about Keywords. Originally intended as an appendix to Culture
care, often exacerbating the impact of the pandemic and Society, Keywords is a collection of short meditations
on racial minorities and disability communities. At the on words that, Williams explains, had “at some time, in
same time, medical schools across the US dramatically the course of some argument, virtually forced [them-
increased their humanities offerings. “Wouldn’t it be selves] on [his] attention because the problems of [their]
interesting,” Sarah Wingerter, physician and director meanings seemed to [him] inextricably bound up with
of the Boston University Medical Campus Narrative the problems [they were] being used to discuss” (R. Wil-
Writing Program, wrote to one of us in the first pan- liams 1976, 15). It grew out of his realization “that some
demic months, “if COVID-­19 gives narrative medicine/ important social and historical processes occur within
reflective writing a boost into mainstream medical language, in ways which indicate how integral the prob-
education?” Then, on May 5, 2020, the Journal of the lems of meanings and of relationships really are,” and
American Medical Association devoted an entire issue to that new and changing words offer insight into new
narrative medicine. Primary care physician and writer and changing relationships (22).
in residence at Massachusetts General Hospital Suzanne Although Lederberg was not a cultural critic, he came
Koven (2020) tweeted, “A whole issue of @JAMA_current to a similar realization. Of the “new strategies and tac-
devoted to narratives. . . . Who knew interest in story­ tics for countering pathogens” that researchers could
telling and #medhum [medical humanities] would explore, he believed “our most sophisticated leap would
surge during a pandemic? (We knew).” be to drop the Manichaean view of microbes—­‘We

2 Introduction Sari Altschuler, Jonathan M. Metzl, and Priscilla Wald

nyu-altschuler.indd 2 23/3/3 11:57 AM

 good; they evil.’” “Perhaps,” he opines, “one of the War is a human, not a microbial, phenomenon. From
most important changes we can make is to supercede public health decisions made in the absence of vital
[sic] the 20th-­century metaphor of war for describing knowledge about a deadly new virus to the widespread
the relationship between people and infectious agents” efficacy of disinformation campaigns, it has never been
and replace it with a “more ecologically informed meta- clearer that the language of health and health care is not
phor, which includes the germs’-­eye view of infection” simply a method through which we transmit informa-
(Lederberg 2000, 292–­93). A new metaphor, he suggests, tion but a knowledge-­shaping instrument—­one that
would lead to a crucial conceptual shift, the effects of must be used with care and deliberation.
which would be immense. Its benefits might range from Words do not only crystallize and circulate; they are
research into largely ignored symbiotic microbes and a also records of historical change. They are shaped (and
better understanding of the human biome to a more sometimes haunted) by their origins, and the permu-
productive relationship with antibiotics and antibacte- tations along the way offer an account of the chang-
rial products and new, long-­term solutions for intransi- ing relationships and environments—­the debates, the
gent epidemic diseases. struggles to make sense of the world—­t hrough which
By imagining the future of health, health care, and they circulated and helped fashion. Health derives ety-
health research as a question of vocabulary, Lederberg mologically from Old Norse meaning “holy, sacred”
underscores the centrality of words to the ways we in- and from the Proto-­Germanic “whole.” Its meanings
habit the world. When epidemiologists, medical re- moved generally from a bodily focus to the broader
searchers, and practitioners go into the field, their labs, sense of spiritual as well as physical well-­being. In
and their clinics, they bring their worldviews and the 1946, the WHO, in its constitution, offered a definition
vocabularies that shape them. Words are tools that af- of the word that marked the most fundamental com-
fect how we understand a problem and how we ap- mitment of the organization: health as “a state of
proach a solution. Researchers rely on these tools, as complete physical, mental and social well-­being and
does the general public. We hear repeatedly that we are not merely the absence of disease or infirmity” (“Con-
“at war” with SARS-­CoV-­2—­us versus them—­but that stitution of the World Health Organization” 1946, 1315).
obscures what the germs’-­eye view might clarify: hu- This definition was ratified in 1948, along with the
mans’ many roles as traffic engineers and the social and adoption of the United Nations Universal Declaration
geopolitical conditions that create such outbreaks of Human Rights, which included the principle that
and tur n t hem into pandemics. Ecological “everyone has a right to a standard of living adequate
metaphors—­
o nes that convey the germs’-­
e ye for the health and well-­being of himself and of his fam-
view—­remind us that the planet, as well as the human ily, including food, clothing, housing and medical care
body, is a biome; living organisms are intricately in- and necessary social services, and the right to security
terconnected. As Lederberg noted in the early years of in the event of unemployment, sickness, disability,
emerging infections research, “Many people find it dif- widowhood, old age or other lack of livelihood in cir-
ficult to accommodate to the reality that Nature is far cumstances beyond his control” (UN General Assembly
from benign; at least it has no special sentiment for the 1948, article 25). That assumption informs the most
welfare of the human versus other species” (1996, 3). basic precepts of any social and environmental justice

Introduction Sari Altschuler, Jonathan M. Metzl, and Priscilla Wald 3

nyu-altschuler.indd 3 23/3/3 11:57 AM

 movement. Health discrepancies among populations advances and dramatic geopolitical shifts have given
record the inequities of any given society; they measure rise to new and changing words—­for example, the
what Stokely Carmichael and Charles Hamilton called newly coined and shifting terms that have increasingly
“institutional racism”—­the difference in mortality rates, shaped an English-­language lexicon during the COVID-
for example, of white and Black and Brown babies—­and ­19 pandemic alone, from Covidiot and Zoombombing to
what Johan Galtung (1969), following Carmichael, the more nuanced meanings of white supremacy and
has termed “structural violence” or “social injustice.” systemic racism to debates over the definitions of funda-
Galtung writes, “If people are starving when this is ob- mental public health terms like mild and endemic. This
jectively avoidable, then violence is committed, regard- proliferation, moreover, in turn signals the need for
less of whether there is a clear subject-­action-­object new kinds of knowledge. As older disciplines shift to new
relation, as during a siege yesterday or no such clear re- fields of study, keywords volumes have surfaced to help
lation, as in the way world economic relations are orga- negotiate the changing conceptual terrain. Health hu-
nized today” (171). manities is one such field.
The capaciousness and pervasiveness of health—­as a Because the concept of health persistently defies
broad description of proper functioning, as an intimate disciplinary boundaries, we believe a keywords project
term we use to understand our minds and bodies, as a provides the best conceptual architecture for the health
wide-­ranging cultural imperative, as a moral judgment, humanities. The lexicon that follows invites students,
as a word used to describe a set of professions, and as a scholars, and other professionals both to interrogate the
central element of all life—­make it a fundamental key- words we use to frame the central debates in the field
word for today’s world. It has a set of academic, profes- and to work toward a shared vocabulary. Through this
sional, and popular meanings that mark what Raymond approach, we begin to address crucial questions for the
Williams calls “the ways not only of discussing but at health humanities: What needs have given rise to this
another level of seeing many of our central experiences” field of study? What are some of the ambitions, strug-
(1976, 15). These linguistic negotiations play out in gles, and key debates that are defining the field? What
the home, in the classroom, in the examination room, words are surfacing or changing to make sense of the
in the courts, in the press, on the internet, and most knowledge emerging in this field? How do the defini-
broadly, across the geopolitical relations of our plane- tions or uses of those words interact, collide, contradict,
tary biome. This capaciousness and complexity pushed occlude, and generate new understanding? What kinds
us to title this volume Health Humanities instead of Medi- of work, care, and community do they make possible,
cal Humanities and are why we have insisted on health and what insights do they foreclose? Are there words
in its broadest sense, not a word that is the exclusive that might serve us better?
purview of medicine and the health professions but a Just as we recognize the capacious multidisciplinary
concept fundamental to all life (cf. Crawford et al. 2010; reach of the term health, we are equally committed to
T. Jones, Wear, and Friedman 2014; T. Jones et al. 2017). the capaciousness—­and rigor—­of the term humanities
The proliferation of keywords volumes in the twenty-­ in the title of our volume. We recognize and embrace the
first century is, moreover, an indication of changes in diversity of health practitioners, therapists, social sci-
the nature of our fields of study. The rapid technological entists, artists, and humanities scholars who compose

4 Introduction Sari Altschuler, Jonathan M. Metzl, and Priscilla Wald

nyu-altschuler.indd 4 23/3/3 11:57 AM

 the health humanities, from the broad commitment
of the medical humanities to humane health care to
the social justice orientation of the health humanities,
as Erin Gentry Lamb and Craig Klugman (2019) have
argued. At the same time, we understand the humani-
ties themselves as a set of rigorous ways of knowing and
methods of analysis that have a unique and founda-
tional place in the study of health (for more on humani-
ties in the health humanities, see “Humanities”). As
Catherine Belling has argued, the humanities cannot be
reduced to the art or the science of fields like medicine
but instead offer a crucial third perspective that ques-
tions “the epistemology, ethics, and language of both
biomedical science and clinical practice” (2017, 20). Ap-
proaches characteristic of the health humanities make
both empirical and nonempirical analysis possible as
they facilitate movement across scales of analysis. More-
over, humanities-­based inquiry offers a flexibility to
move between empirical (already central to knowledge
making in medicine, the health sciences, and the social
sciences) and nonempirical ways of knowing (philology,
close reading, cultural analysis and history, philosophi-
cal and theoretical inquiry, for example) that holds pow-
erful potential, as Lederberg described decades ago, to
shed new light on foundational and critical questions in
health and health care. In the spirit of his challenge, we
begin from the study of what and how words mean,
what they do, and how they have organized knowledge,
culture, medicine, science, and society in the past, how
they do so in the present, and how they might do so
in the future—­fundamental questions the humanities
prepare us to answer.

Introduction Sari Altschuler, Jonathan M. Metzl, and Priscilla Wald 5

nyu-altschuler.indd 5 23/3/3 11:57 AM

nyu-altschuler.indd 6 23/3/3 11:57 AM
 broadly understood and on the intersectional histories

1 of class and embodiment implicated in long-­standing

disparities. Indeed, a shared commitment to making
Access health universally accessible is a common aspiration
Todd Carmody of many scholars in the interdisciplinary field of the
health humanities.
And it’s easy to see why. In the United States, eco-
nomic issues have long been at the heart of inequi-
In the broadest strokes, the keyword access refers to “the table access to health and health care. Throughout
power, opportunity, permission, or right to come near or the early republic and antebellum eras, most medi-
into contact with someone or something” (OED Online cal care was provided in the home by the members of
2021, “access”). This definition highlights the spatial one’s family—­a burden that fell disproportionately to
or environmental dimension of access. As disability women—­or by private physicians. Only people without
activists and scholars have argued, questions of access financial resources or families able to care for them were
foreground the body’s relation to the built and social treated (or warehoused) in hospitals, which commonly
environment. Attending to access also highlights the doubled as poorhouses. The professionalization of med-
necessity of making public infrastructure—­and public icine that began in the early twentieth century did not
life more generally—­responsive to a diversity of human end this economic segregation or disrupt the gendered
bodies and abilities. In architecture and technology, division of medical labor. Instead, the gradual emer-
access interventions include wheelchair ramps, gence of what is often called the “medical-­industrial
widened toilet seats, lever-­shaped door handles, Braille complex”—­a system of commodified care managed by
lettering, closed-­captioning in videos, and universal business interests, medical professionals, and the insur-
design. In civil society, policy and legal interventions ance and pharmaceutical industries—­deepened extant
support equal access to jobs, housing, education, inequalities and further devalued the care work per-
public space, public institutions, art, and culture. In formed by women (Ehrenreich and Ehrenreich 1971).
health care, equal access initiatives aim to guarantee all Access to health care became even more tightly and
individuals affordable, high-­quality, and culturally and problematically bound to the white middle-­class het-
linguistically appropriate care, including preventative erosexual family when paid labor—­generally by male
medicine, emergency care, and mental health support. breadwinners—­became a prerequisite for receiving in-
While perhaps most notable among disability stud- surance in the mid-­twentieth century.
ies scholars in the health humanities, the issue of access For many socially marginalized people, these eco-
is a central concern across the shifting constellation of nomic disparities in access to health and health care
disciplines that make up the health humanities more have been compounded by the inequitable distribution
broadly. Whether in anthropology, bioethics, or literary of both the benefits and the harms of medicine. Histori-
studies, scholars explore the relationship between bod- cally speaking, certain people have been more likely to
ies and built and social environments of all kinds. Many interact with health-­care institutions as test subjects
focus in particular on access to health and health care than as recipients of salutary care. Trans and gender

nyu-altschuler.indd 7 23/3/3 11:57 AM

 nonconforming people, for instance, were crucial to the acres and a mule,” the coming of freedom left many
emergence of scientia sexualis at the turn of the twen- people behind (Downs 2012). In the early twentieth
tieth century but typically could not access supportive century, a similar segregation took hold in the bud-
health services. More recently, as T. Benjamin Singer ding medical profession. Finding their communities
writes, the erasure of transgender people from public excluded from Jim Crow facilities and mistreated by
health settings has been accompanied by a “bewilder- white physicians, many African Americans built on
ing profusion of trans-­related categories,” demographic older traditions of mutual aid and club movements to
designations that create new points of access for mar- create community-­based modes of access. The Black
ginalized individuals while also bolstering biopolitical hospital movement channeled this energy into a suc-
relations of power (2015, 61). cessful wave of institution building, consolidating a
The history of African American access to health and tradition of self-­help that the Black Panther Party (BPP)
health care reflects a similar dynamic of erasure forcefully took up a half century later (Gamble 1995). As
and hypervisibility. Running parallel to the long his- Alondra Nelson has shown, the BPP mobilized a range
tory of experimentation on Black bodies that Harriet A. of community-­led responses to face down old and new
Washington calls “medical apartheid” is an equally long barriers to accessing health care (2011, 183).
history of coercive care rooted in chattel slavery (2006). Disability activists have also connected access to
As historians have shown, enslaved people were most health care to struggles for civil rights, though often
likely to receive medical care at the behest of enslav- by challenging rather than cultivating medical author-
ers motivated chiefly to preserve their financial invest- ity. The disability rights movement, after all, was in-
ments. Indeed, the diagnostic category of “soundness” augurated in part as a response to the “medical model”
used by physicians, slave traders, and slaveholders of disability. This phrase describes the long-­standing
equated the health of enslaved people with their capac- conviction—­among medical professionals but also the
ity for labor (Fett 2002, 20). Such nomenclature and broader public—­t hat disability is a cognitive or physi-
the managerial practices it sanctioned, as Rana A. Hog- ological problem in need of medical intervention or
arth argues, also silenced the claims to authority that correction. The medical model not only dismisses how
enslaved people made on behalf of indigenous healing people with disabilities experience their lives and bod-
practices (2017). Enslaved people were thus unable to ies, but it also enforces a top-­down model of health care.
determine either how they accessed health care or what People with disabilities, in other words, have historically
kind of health care they were given. had little say in how—­or even whether—­they access re-
Questions of Black access to health and health care sources and services. Beginning in the 1960s, activists
were no less vexed after emancipation. Not only did associated with the Independent Living Movement in
Black veterans of the Union army face sustained dis- the United States and the Self-­Advocacy Movement
crimination when seeking medical treatment and in- globally set out to wrest control away from medical au-
valid pensions, but the terms on which freedom itself thorities (Joseph Shapiro 1993, 51). Ultimately, these
was imagined under radical Reconstruction were often movements succeeded not only in creating systems that
tacitly ableist. Whether “voting with one’s feet” or en- allow people with disabilities to determine how they ac-
deavoring to prove one’s humanity at work on “forty cess health care but also in challenging the assumptions

8 A cc e s s Todd Carmody

nyu-altschuler.indd 8 23/3/3 11:57 AM

 about individual self-­sufficiency often implicit in the what Aimie Hamraie has called “the historical project of
idea of access itself. For these activists, in other words, knowing and making access” (2017, 3). Such a reconcep-
access is less a matter of asserting one’s autonomy tualization would mean approaching access—­to built
than affirming communities of care and networks and social environments but also to health and health
of interdependence. care—­as a collective undertaking and not an individual
More recent disability activists have returned to the right. Doing so would also involve rethinking the field’s
idea of access not to challenge the authority of the med- shared commitment to making, per the World Health
ical establishment but to underscore the limitations of Organization’s constitution, the “highest attainable
earlier rights-­based approaches to social advancement. standard of health” universally available (“Constitution
Organizing under the banner of disability justice, these of the World Health Organization” 1946, 1315). Rather
activists acknowledge the importance of legislation than redress disparities in the systems and structures
like the Americans with Disabilities Act but argue that that currently exist to foster health, promoting access
framing access as an issue of individual rights leaves too would mean ensuring that everyone has the collective
much on the table—­and too many in the cold. Move- means to reimagine and remake those systems from the
ment organizers and leaders maintain that many dis- ground up.
abled people, particularly disabled people of color, are
unlikely to “achieve status, power, [or] access through
a legal or rights-­based framework” (Sins Invalid 2019,
14). Emphasizing disability justice rather than disability
rights means underscoring that access is not a single-­
identity issue but rather shaped by disability’s inter-
sections with race, gender, sexuality, age, immigration
status, and religion, among other categories of identity
and experience. Just as consequentially, disability jus-
tice paradigms frame access as a collective rather than
an individual project. As the activist and performance
collective Sins Invalid argues, only “universal access can
lead to universal, collective liberation” (14). From this
vantage, truly meaningful access to health and health
care—­essential in many disabled people’s lives—­cannot
be realized without abandoning individualist notions of
accessibility and addressing systemic barriers to collec-
tive liberation.
Indeed, if access first became a keyword for the health
humanities as framed by the disability rights movement,
contemporary scholars and practitioners might look to
the paradigm of disability justice to reconceptualize

A cc e s s Todd Carmody 9

nyu-altschuler.indd 9 23/3/3 11:57 AM

 of aging have had an undue and problematic influence

2 on the social practices and cultural meanings around old

age, decoupling aging from decline should be a focus for
Aging health humanities.
Erin Gentry Lamb Like many other characteristics American society
tends to ground in the body—­including sex, gender,
race/ethnicity, and bodily ability—­age is an identity
category that affects an individual’s self-­concept, place
Aging is the biological, social, and cultural process of in social hierarchies, and interactions with others.
growing older. It is a lifelong process, but the word’s For example, age conditions our expectations of oth-
common usage focuses our attention on later life; ers’ appearance and behavior, as indicated by fashion
we are more inclined, for example, to describe magazine articles on “age-­appropriate” clothing and
childhood and young adulthood as “growing up.” The admonishments of those who are not “acting their
language and imagery we use to describe aging—­from age.” However, age is the one identity category where,
the stair-­step images of the Ages of Man to over-­t he-­ if we live to our expected limits, we will all experience
hill birthday cards—­map the life course as a rise and the entire spectrum of its identities from young to old.
a fall; the progress implied by growing “up” contrasts While some individuals may chafe at being categorized
with the decline narratives we frequently associate with as “young” or “middle-­aged,” “old” is an identity es-
aging (Gullette 2011). Cultural ideas of aging as chewed by most; it is rare to hear “old” claimed with
decline are shaped strongly by the biological process pride. Instead, age denial thrives across many cultures,
of aging into old age. While individuals have varied evident in phrases like “Sixty is the new forty” and in
experiences of biological aging—­invariably shaped by our multibillion-­dollar global antiaging market.
accumulated advantages and disadvantages over the life One impetus toward age denial is the association of
course—­changes in physical functioning are inevitable, old people with health needs, which has defined many
and many additionally experience changes in mental countries’ perceptions of population aging. Dramatic
capacity. However, our broad associations of old age shifts in life expectancy during the twentieth century
with physical and mental decline too often dictate the have made this group a larger and more visible por-
social roles and cultural ascriptions associated with tion of our population. Within the United States, peo-
older people. For example, regardless of health or work ple sixty-­five and older composed just 4.1 percent of
status, we are likely to perceive any seventy-­year-­old as the population in 1900, as compared to 16 percent in
a retiree whose contributions to society are limited to 2018 and an anticipated 21.6 percent by 2040 (Admin-
volunteering, grandparenting, and consumption—­of istration on Aging 2017). The growing “dependency
both commercial goods (a positive) and health-­care ratios”—­that is, ratios of older (sixty-­five plus) to work-
resources (a negative). Such limited views of older ing populations (fifteen to sixty-­four)—­give rise to
people’s social worth and capacities provide the panicked warnings about the burden of a growing pop-
fodder for ageism: stereotypes, prejudice, and/or ulation of old, dependent people and our unprepared-
discrimination on the basis of age. As biological notions ness to provide them with long-­term care; in one global

10

nyu-altschuler.indd 10 23/3/3 11:57 AM

 survey, countries with the lowest dependency ratios had 2014, 128). To meet the care needs of older people, our
the highest percentages of citizens reporting population current health systems—­including insurance and long-­
aging as a “major problem” within their countries (Pew term care facilities—­need to be transformed, and health
Research Center 2014). Stigmatizing language such as humanities can and should provide the vision to shape
“the silver tsunami” or the hashtag #BoomerRemover, new policies (World Health Organization 2020b).
which trended in the early months of COVID-­19, dehu- Many age-­related experiences have also become a
manizes older adults by emphasizing the catastrophic more central and problematic focus of health care over
care needs anticipated to fall on younger populations the course of the twentieth century; menopause, andro-
and by devaluing older lives (Charise 2012; Kendall-­ pause, baldness, erectile dysfunction, osteopenia, and
Taylor, Neumann, and Schoen 2020). senility have all come to be defined and treated as the
As such, the care needs of an aging population are ripe province of medical experts rather than typical experi-
for health humanities intervention. While experts pre- ences along the natural life span (Bell 1987; van de Wiel
dict a worldwide net shortage of fifteen million health 2014; Conrad 2007; Larkin 2011; Bond 1992). Scientific
workers by 2030, driven largely by population growth and medical voices have increasingly pushed to view ag-
and aging, ageism discourages practitioners from work- ing as a disease more than a natural process, correspond-
ing with older populations (Liu et al. 2017). Currently, ing to the rise of “antiaging medicine” (Bulterijs 2015;
approximately 80 percent of US long-­term care given at Gavrilov and Gavrilova 2017; Balasubramanian 2020).
home is provided by unpaid caregivers, typically family Biotech companies have cashed in on this view; for ex-
or friends—­a staggering amount of unrecognized labor ample, Google’s Calico was presented to the public as
(Administration on Aging 2020). One reason for high an effort to “cure aging” (e.g., S. Lee 2014; K. Anderson
rates of informal caregiving is that little governmental 2015). Medicalization is a double-­edged sword; it legiti-
support exists for long-­term care. For example, should mizes experiences and frequently provides treatment
someone need skilled nursing home care, Medicare options while limiting possible interpretations and of-
(health insurance for adults sixty-­five plus) only cov- ten creating stigma. Health humanities has a role to play
ers one hundred days. Most nursing home care is paid here too in thinking critically about the medicalization
for by Medicaid (health insurance for those with low of aging and intervening where it may help people feel
income or disabilities), requiring many to spend down more positive about their prospective aging.
their assets until they qualify (US Centers for Medicare Ageism is an important social determinant of health
and Medicaid Services 2020). Our federal health systems that leads to negative health consequences at both indi-
are built for acute care; they only minimally account vidual and structural levels (Chang et al. 2020). In labo-
for the largely chronic health needs of an aging popu- ratory studies, elders respond to age cues: those primed
lation, which can be best approached by coordinated with negative stereotypes perform worse on a variety
care and management (Aronson 2019). Even for those of cognitive and emotional tests (Chrisler, Barney, and
who can afford it, nursing home care is rarely what we Palatino 2016, 90–­91; B. Levy 2009, 334). Psychologist
would wish for ourselves or loved ones; such facilities Becca Levy has shown that negative age stereotypes
emphasize safety and protection at the expense of what held by an individual can affect their “memory perfor-
matters most: “a life of worth and purpose” (Gawande mance, balance, gait speed, and hearing”; “exacerbate

Aging Erin Gentry Lamb 11

nyu-altschuler.indd 11 23/3/3 11:57 AM