Diversity Awareness Class – Allyship and Activism – Due 11/12

21

insistence on social supports like vocational training.

Through the CRPD, the concept of accommodation

continues to be important to efforts to create equal op-

portunities and access both for people with disabilities

and for the not-yet-disabled, which is to say, everyone.

These legal and conceptual endeavors all take accom-

modation to mean altering the environment to respond

to disability. But Harriet McBryde Johnson (2003) turns

this definition on its head in her elegant essay about

her surprisingly cordial meeting with Princeton profes-

sor Peter Singer, whose brand of utilitarianism implies

that people with disabilities like hers should not exist

at all. Johnson explains why she disagrees with those

who see Singer as a monster. His views, she observes,

are simply not so far from those of many people she en-

counters every day: “The peculiar drama of my life has

placed me in a world that by and large thinks it would

be better if people like me did not exist. My fight has

been for accommodation, the world to me and me to

the world” (Johnson 2003, 79). Johnson thus reminds

us that accommodation, in the disability context, may

be shadowed by what it has meant in terms of race—the

marginalized group in some way compromising with

the mainstream—and suggests that the two meanings

may be, for better or for worse, inseparable.

6 Activism Denise M. Nepveux

Activism is a practice of, or orientation toward, taking

action, often implying the context of a social or political

movement. Although activism emphasizes collective

action, an individual and his or her actions may be

considered “activist” depending on their relationship to

larger struggles. Disability activism refers to “collective

political action by and for people with disabilities”

(Barnes and Mercer 2010, 176), which contributes

to “the continuing str uggle of disabled people to

gain a voice and to shape our destinies” (Longmore

2003, 231). The word “advocacy” is sometimes used

interchangeably with activism, since a person may

advocate on behalf of others. But although some

scholars and activists include advocacy by parents and

other nondisabled allies under the category of disability

activism, leadership by disabled people in activism is

crucial to collective autonomy.

While recognizing a plurality of disability move-

ments, and groups within disability movements, the

late Paul Longmore argued that some shared goals and

stances predominate. These include the reframing of

“disability” as a social and political, rather than simply

a medical and rehabilitative, problem; the shift in pri-

orities from correcting individuals to reforming society;

the assertion that the necessary means for social partici-

pation and integration, whether devices and services or

access and accommodations, should be enforceable civil

rights rather than dispensations of charity; the contests

for power with professionals and bureaucrats; and the

C o p y r i g h t 2 0 1 5 . N Y U P r e s s .

A l l r i g h t s r e s e r v e d . M a y n o t b e r e p r o d u c e d i n a n y f o r m w i t h o u t p e r m i s s i o n f r o m t h e p u b l i s h e r , e x c e p t f a i r u s e s p e r m i t t e d u n d e r U . S . o r a p p l i c a b l e c o p y r i g h t l a w .

EBSCO Publishing : eBook Comprehensive Academic Collection (EBSCOhost) - printed on 11/10/2021 3:08 PM via UNIVERSITY OF MARYLAND GLOBAL CAMPUS AN: 992496 ; Rachel Adams, Benjamin Reiss, David Serlin.; Keywords for Disability Studies Account: s4264928.main.edsebook

a c t i v i s m d e n i s e m . n e p v e u x22

quest for both individual and collective empowerment

and self-determination (Longmore 2003, 114).

Addressing disabling barriers to political participa-

tion and mobilization is another unifying concern

(Charlton 1998). For instance, many disabled adults

encounter inaccessible voting arrangements or are

ineligible to vote (Barnes and Mercer 2010, 158–160).

Educational barriers hinder effective organizing. Trans-

portation barriers make it difficult to hold meetings or

participate in public gatherings. Community meetings

and political events are often held in structurally inac-

cessible spaces, with poor air quality or use of scented

products, and without accommodations for nondomi-

nant languages or multimodal forms of communication.

These and other forms of disenfranchisement have mo-

tivated activists to demand change and also to take steps

to ensure accessible spaces, processes, and communica-

tion strategies within disability movements.

Disability activism arose in the late nineteenth and

early twentieth centuries as some people with dis-

abilities began to organize to resist restrictions on their

freedoms and demand economic opportunities within

industrial economies. Blind people and other disabled

people in the United States, the United Kingdom, and

Ireland formed associations to fight for social and eco-

nomic rights and modeled their aims and tactics on

working-class and trade union struggles (Ó Cathain

2006). In the mid-twentieth century, blind, deaf, and

physically disabled people engaged in separate struggles

for specific policies, with each group seeking to better

its educational or economic opportunities. Parents of

children with disabilities organized locally and inter-

nationally to resist institutionalization and advocate for

community living and educational access.

In the 1960s, a confluence of developments enabled

a cross-disability political consciousness to emerge in

the United States. Observation of and participation in

the civil rights movement, the Black Power movement,

the women’s movement, and other collective struggles

of the 1960s and early 1970s exposed men and women

with disabilities to tactics of protest and enabled them

to begin recognizing and questioning violations of their

human and civil rights. The women’s health movement,

in particular, questioned medical power and supported

individual empowerment. Yet people with disabilities

often experienced barriers to full participation in these

movements.

Other developments opened opportunities for new

understandings and increased expectations of freedom

from institutionalization and professional domina-

tion. In the late 1940s, for instance, disabled veterans

of World War II experienced barrier-free mobility in

dedicated spaces at the University of Illinois, Galesburg

(later relocated to Urbana-Champaign), which encour-

aged them to challenge institutionalized barriers to

their broader social and economic reintegration out-

side of the university setting (Pelka 2012). Meanwhile,

the first generation of physically disabled youth who

had attended public schools began demanding access

to higher education and developing new models of

user-controlled services. In the early 1960s, University

of California, Berkeley, undergraduate Ed Roberts and

his colleagues—known as the Rolling Quads—were

inspired in part by other forms of student activism at

Berkeley, including the Free Speech Movement and the

women’s movement’s refusal of imposed passivity. Rob-

erts went on to establish the Disabled Student Program

on campus; in 1972, he cofounded the city of Berkeley’s

Center for Independent Living (Fleischer and Zames

2001, 36–39).

Section 504 of the Rehabilitation Act of 1973, which

mandated equal access in federally funded programs

and buildings, created a watershed opportunity for

disability activists. Yet by the mid-1970s the U.S.

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a c t i v i s m d e n i s e m . n e p v e u x 23

Department of Health, Education, and Welfare (HEW)

had delayed enforcement of the new regulations. In

1977, disability activists—led by the group Disabled in

Action—responded with sit-ins of federal buildings in

New York, Washington, DC, and San Francisco (Barn-

artt and Scotch 2001). A broad array of nondisabled ally

groups supported the twenty-five-day occupation by

disabled activists of the HEW regional headquarters in

San Francisco. Through these weeks, a number of emer-

gent disability rights activists—some of whom were also

active in the Black Power movement—shared stories

and came to understand the relatedness of their experi-

ences across different impairment categories (Schweik

2011). This deepened understanding across categories

of race, class, gender, and ability enabled protesters to

commit to shared political struggle (Longmore 2003).

Simultaneous developments in the United Kingdom

reflected parallel shifts in consciousness as well as po-

litical strategy. The Union of the Physically Impaired

against Segregation (UPIAS) developed what has be-

come recognized as the social model of disability as a

way of rejecting professional and charitable dominance

and asserting the inherently unjust social and politi-

cal bases of disability-related inequality and exclusion.

This new way of defining disability in terms of exclusion

rather than embodiment helped activists across impair-

ment groups to recognize common experiences of ex-

clusion and restricted life chances and to build a shared

politics of disability.

These shifts undergirded extensive coalition building

across the globe through the latter decades of the twen-

tieth century and galvanized such remarkable organi-

zational and legislative successes as the United King-

dom’s Chronically Sick and Disabled Persons Act (1970),

France’s Declaration of the Rights of Handicapped Per-

sons (1975), Disabled Peoples International (established

in 1981), American Disabled for Accessible Public Transit

(ADAPT; established in 1983), the Americans with Dis-

abilities Act (1990), and the UN Convention on the

Rights of Persons with Disabilities (2008).

Despite the spread of cross-disability organizing and

the growing embrace of the social model of disability

among diverse activists, disability rights movements

continue to be “a splintered universe” of loosely af-

filiated groups and shifting coalitions (Shapiro 1994,

126). Factions within disability movements often have

overlapping membership and goals, and they reach

out to one another for solidarity and costrategizing on

specific campaigns. In the United States, some groups

have arisen from specific, impairment-related histories

of segregation and other forms of institutionalized op-

pression; these include blind people’s activist groups;

psychiatric “survivors,” “mad activists,” and other cur-

rent or former mental health service users who protest

the treatment and social situation of those who are la-

beled mentally ill; and self-advocacy movements such

as People First and the Autistic Self-Advocacy Network.

Other groups have organized in relation to inter-

sectional political identities, including Feminist Re-

sponse in Disability Activism (FRIDA) and indigenous

peoples’ disability activist groups. These groups chal-

lenge racism and patriarchy within disability groups.

Some groups have organized to address specific issues;

ADAPT, for example, first organized in the early 1980s

to fight for transportation access, now focuses on dein-

stitutionalization and community living. Other groups

include those that resist a liberal, civil rights–based ap-

proach and advocate a more radical vision of social jus-

tice, for example, the disability justice movement and

Occupy Wall Street–related groups. Not Dead Yet fights

physician-assisted suicide and related life-ending poli-

cies and practices under which persons with physical

disabilities and chronic illnesses are disproportionately

targeted. And although they have worked in coalition

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a c t i v i s m d e n i s e m . n e p v e u x24

for cross-disability legislation, Deaf Pride movements

continue to distance themselves from disability identity,

asserting instead a linguistic and cultural minority iden-

tity and refusing to associate deafness with impairment.

There is little agreement as to which actions rise to

the level of “activism”; a seemingly wide array of tactics

may be considered activist. The term “click-tivist,” for

instance, has recently been used to dismiss Internet-

based activism that may be poorly informed and re-

quires little individual effort. Yet the increasing use of

information technology and social media has enabled

geographically disparate disability groups to organize,

and many groups have broadened their communicative

and coalition-building capacities. Disability activists in

Ontario, for example, may be unable to meet frequently

in person across hundreds of miles, but they strategize

online. Deaf activists in Ghana and elsewhere com-

municate largely by e-mail and text. U.S. activists with

chronic fatigue and immune dysfunction syndrome

and multiple chemical sensitivities, for whom in-person

activism is largely inaccessible, engage from home via

the Internet. A monthly “Organizers Forum” phone call

allows activists from disability groups across the United

States and beyond to connect, learn together, and ex-

change ideas.

Although much social and policy advocacy now

takes place online, street protests, disruptive occupa-

tions, and performance-oriented street theater remain

crucial ways to draw attention to disability issues that

might otherwise be rendered invisible. The line between

political protest and performance often has been blurry.

ADAPT protesters crawled up the steps of the U.S. Capi-

tol in 1990 to protest delays in passage of the Americans

with Disabilities Act. Elderly women activists in Syra-

cuse, New York, protested closure of the Ida Benderson

Senior Center in 2011 by organizing and participating

in a public head shaving. Jerry’s Orphans repeatedly

disrupted the (now-defunct) annual Muscular Dystro-

phy Association Telethon in Chicago and documented

these efforts on film.

Some activist events take a playful tone and gesture

toward alternative social arrangements and definitions.

Mad Pride Week in Toronto, for example, utilizes a va-

riety of participatory performances such as the Mad

Hatter’s Tea and the Bed Push Parade to celebrate mad

pride, history, and culture. Such activism does not pro-

pose policy; rather, it makes visible the everyday quality

of disability oppression while also celebrating disabil-

ity experience and culture and engaging bystanders in

imagining and even coperforming alternatives.

Simi Linton has observed that “disability studies

both emanated from and supports the Disability Rights

Movement” (qtd. in Fleischer and Zames 2001, 206).

Many groundbreaking scholars in disability studies—Ed

Roberts, Simi Linton, Paul Longmore, Jim Charlton, and

Carol Gill, to name but a few—emerged directly from

activist backgrounds and resistance movements. Activ-

ism is—in Robin D. G. Kelly’s phrase—an “incubator of

knowledge” (qtd. in Schweik 2011), and the collective

wisdom of disability activism is preserved in oral history

interviews with activists as well as from memoirs, activ-

ist blogs, zines, photographs, films, and other forms of

social documentation. Yet much of how we think about

disability has emerged not only through the work of ac-

tivists but also through theoretical engagements with

disability activism by scholars in disciplines including

sociology, history, anthropology, and literary and cul-

tural studies.

Although academia and activism are interdependent,

they are often, unfortunately, pitted against one an-

other. On the one hand, activists may perceive the work

of academics and scholars as theoretically abstract and

call for more accessible and relevant disability scholar-

ship (O’Toole 2009). On the other hand, scholars may

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a c t i v i s m d e n i s e m . n e p v e u x 25

dismiss activism as naive or excessively concerned with

short-term, utilitarian goals. Yet this relationship, how-

ever fraught, might be a productive one if reconfigured

as symbiotic and collaborative. Activists can keep schol-

ars current, grounded, and aware, while scholars in turn

may construct “usable pasts,” depictions and theoriza-

tions that aid activists in critically understanding the

present in order to work toward a different future (Long-

more 2003, 9).

With the significant growth of disability studies pro-

grams over the past two decades, the accountability of

scholars to disability activist communities is an often-

debated question. The privilege and security enabled

by academic salaries and benefits are rare commodi-

ties among disabled people, who are among the most

impoverished and disenfranchised groups globally. Yet

such privilege also engenders responsibility to facilitate

tangible social and political transformation. Disability

scholars often engage directly in activism by advocat-

ing for governmental and institutional policy changes,

joining community-based activist groups, supporting

student activism, and working to end exclusionary prac-

tices in scholarly associations and the academy itself.

Of course, scholars also address this accountability

through their scholarship. Humanities scholars uncover

experiences and knowledge of disability that complicate

dominant narratives; activists may take up such knowl-

edge in a variety of ways. Some social researchers (Good-

ley and Lawthom 2005) engage in participatory action

research that sheds light on realities of community life

while building self-advocacy among participants. Some

UK sociologists, such as Michael Oliver, have insisted

upon a strict “emancipatory” model, in which disabil-

ity scholarship is guided and led by disabled activists in

a way that supports the disability community’s policy

agenda. Doing so is not straightforward, however, as

disability activists are not unified, and activist agendas

require both scholarly support and critical examina-

tion if they are to promote justice. For example, Kelly

(2010) warns that when minority model–based activ-

ism glosses over the diversity of needs and interests

within the disability community, the resulting policies

may help some subgroups while neglecting or harming

others.

While scholarship can shed a needed critical light

on the inner contradictions of movements, it can also

help to foster dialogue and alliances among them. Cur-

rently, disability activist-scholars are building bridges

with prison abolition movements, organizations, and

activist groups that promote antiracist and anticapitalist

platforms, and those movements that embrace animal

rights, food justice, and environmental justice. These

emerging dialogues and coalitional politics promise to

complicate and deepen our understandings of disability

and its multiple intersections.

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