1. What is self-advocacy and what is the history behond the movement? Who contributed to the movement and how?
2. What is self-advocacy according to Kimball? According to Caldwell? According to Traustadottir?
3. How has the definition of self-advocacy changed throughout disability history? Why?
4. What is the relationship between self-advocacy and disability history?
5. How can self-advocacy assist in reshaping the way disability history is discussed and taught?
College Students With Disabilities Redefine Activism:
Self-Advocacy, Storytelling, and Collective Action
Ezekiel W. Kimball
University of Massachusetts Amherst
Adam Moore and Annemarie Vaccaro
University of Rhode Island
Peter F. Troiano
Central Connecticut State University
Ba
ara M. Newman
University of Rhode Island
Despite rapid growth in the numbers of students with disabilities enrolling in highe
education, there is limited research about their experiences in colleges and universities,
and information about their collegiate activism is even more limited. Through a
constructivist grounded theory study of 59 college students and recent graduates, we
demonstrate the connection between activism and purpose in the lives of students with
disabilities. Our findings suggest advocacy skills and activist tendencies were social-
ized early in life by parental role models. College students with disabilities drew upon
foundational self-advocacy skills to engage in a variety of forms of disability activism
during college including doing, role modeling, and teaching self-advocacy; reducing
stigma through education and storytelling; and collective action. College students also
engaged in activism on issues other than disability. Na
atives from students with
disabilities demonstrate a need to rethink traditional notions of activism in order to
develop
oader and more accurate definitions of college activism.
Keywords: disability, activism, self-advocacy, stigma, identity
The number of students with disabilities at-
tending higher education institutions is growing
apidly—both in terms of raw numbers and as a
percentage of overall enrollments (Snyder &
Dillow, XXXXXXXXXXNonetheless, we know compar-
atively little about their actual campus experi-
ences (Kimball, Wells, Ostiguy, Manly, &
Laute
ach, 2016; Peña, XXXXXXXXXXThe limited in-
formation that we do have, however, suggests
that students with disabilities may experience a
chilly climate (e.g., stereotypes, assumptions,
exclusion) in higher education (e.g., Cress &
Ikeda, 2003; Elliott, Gonzalez, & Larsen, 2011;
Marshak, Van Wieren, Fe
ell, Swiss, & Dugan,
2010). The end result is that students with dis-
abilities face conditions that might serve as an
incentive for activism. Yet, very few scholars
have studied activism among college students
with disabilities.
The lack of attention to the collegiate activ-
ism of persons with disabilities has profound
implications for scholarship and practice. Fo
example, the experiences of people with disabil-
ities are often not included in
oader historical
treatments of student activism (e.g., Boren,
2001; Degroot, 1998; Feuer, XXXXXXXXXXYet, it is
clear that disability activism has a long history
(e.g., Baynton, 1996; Davis, 2015; Edwards,
2012). Equally problematic, even these histories
of disability activism often understate, or do not
acknowledge, the role of college students in the
development of legislation designed to protect
the civil rights of students with disabilities (e.g.,
Davis, 2015; Schweik, 2009; Scotch, 2001).
Ezekiel W. Kimball, Department of Educational Policy,
Research, & Administration, University of Massachusetts
Amherst; Adam Moore, Special Education, University of
Rhode Island; Annemarie Vaccaro, Department of Human
Development & Family Studies, University of Rhode Is-
land; Peter F. Troiano, Counselor Education and Family
Therapy, Central Connecticut State University; Ba
ara M.
Newman, Department of Human Development & Family
Studies, University of Rhode Island.
Co
espondence concerning this article should be ad-
dressed to Ezekiel W. Kimball, Department of Educational
Policy, Research, & Administration, University of Massa-
chusetts Amherst, 252 Hills South, Amherst, MA 01003.
E-mail: XXXXXXXXXX
T
hi
s
do
cu
m
en
t
is
co
py
i
gh
te
d
y
th
e
A
m
e
ic
an
Ps
yc
ho
lo
gi
ca
l
A
ss
oc
ia
tio
n
o
on
e
of
its
al
lie
d
pu
l
is
he
s
.
T
hi
s
a
tic
le
is
in
te
nd
ed
so
le
ly
fo
th
e
pe
s
on
al
us
e
of
th
e
in
di
vi
du
al
us
e
an
d
is
no
t
to
e
di
ss
em
in
at
ed
oa
dl
y.
Journal of Diversity in Higher Education © 2016 National Association of Diversity Officers in Higher Education
2016, Vol. 9, No. 3, 245– XXXXXXXXXX/16/$12.00 http:
dx.doi.org/10.1037/dhe0000031
245
mailto: XXXXXXXXXX
http:
dx.doi.org/10.1037/dhe0000031
This invisibility may contribute to the misim-
pression among faculty and staff members that
students with disabilities are not engaged in
contemporary activism, which may in turn alte
their behavior toward students with disabilities
and student activists (Bensimon, XXXXXXXXXXIt may
also prevent students with disabilities from rec-
ognizing that their cu
ent activism stems from
and contributes to the historical climate for di-
versity on college campuses (Hurtado et al.,
2012). More information about the activism of
students with disabilities is required to guard
against these potentially deleterious effects.
In this article, we share results from a con-
structivist grounded theory study of 59 college
students and recent graduates with disabilities.
The original focus of the study from which
these observations are drawn was to explore the
sense of purpose among college students with
disabilities. Given the limited research on the
elationship of disabilities to psychosocial de-
velopment in adolescence and early adulthood,
we approached this work by encouraging stu-
dents to give their own definition of disability,
to explain the meanings they associated with
their disabilities, and to describe the ways these
disabilities figured into important life decisions,
especially decisions about where to go to col-
lege, what to study, career aspirations, plans fo
after college, and long-term life goals.
Drawing on the work of Damon and col-
leagues (Damon, Menon, & Bronk, 2003; Da-
mon, 2008), we think of purpose as a higher-
order goal that gives direction and meaning to
life. Damon et al XXXXXXXXXXdefined the construct:
“Purpose is a stable and generalized intention to
accomplish something that is at once meaning-
ful to the self and of consequence to the world
eyond-the-self” (p XXXXXXXXXXBuilding on this def-
inition, we hoped to discover students’ inten-
tions about their goals, what steps they were
taking to achieve their goals, and what if any
motivations guided them to want to connect
their efforts to the betterment of others (Malin,
Reilly, Quinn, & Moran, XXXXXXXXXXEmbedded in
this definition is an implied potential path to-
ward activism, sometimes refe
ed to in the
literature as civic purpose (Malin, Ballard, &
Damon, XXXXXXXXXXOur assumption is that the sense
of purpose matures over the period of early and
later adolescence, as young people think about
what matters to them, what they care about, and
what they hope to achieve in the near and dis-
tant future. We hoped to gain a greater under-
standing of whether and how students’ experi-
ences with their disabilities influence their sense
of purpose. From our analysis emerged impor-
tant themes regarding disability activism.
Literature Review
High-quality empirical literature on students
with disabilities is limited (Kimball, Wells, Os-
tiguy, Manly, & Laute
ach, 2016; Peña, 2014).
Therefore, we made use of a variety of bodies of
literature to craft this article—some focused
specifically on disability, others on activism,
and still others the
oader experience of col-
lege students. In this section, we specifically
discuss key research linking purpose and activ-
ism, review competing definitions of activism,
and explore connections between identity de-
velopment, activism and advocacy among stu-
dents with disabilities.
Developing Purpose, Doing Activism
A sense of purpose includes a desire to
achieve goals that contribute to others or to
make a difference in society (Damon et al.,
2003; Damon, XXXXXXXXXXThe definition of pur-
pose—to accomplish “something that is at once
meaningful to the self and of consequence to the
world beyond-the-self” (Damon, p. 121)—can
also be viewed as a descriptor for activism.
Indeed, some scholars have connected youth
activism and purpose by using the term civic
purpose which is “a sustained intention to con-
tribute to the world beyond the self through
civic or political action” (Malin, Ballard, &
Damon, 2015, p. 109).
In their study of high school seniors, Malin
and colleagues explicated how participants ar-
ticulated varying levels of civic purpose. They
operationalized civic purpose as a clear desire to
e involved in a meaningful civic activity; en-
gagement in the activity; and motivation to have
an impact beyond the self through the activity.
Some students had an intention to contribute but
had not actively engaged or they were active but
without a clear sense of how it related to a
future sense of purpose. These results support
the idea that an emerging capacity for activism
in high school is rooted in a developing sense of
purpose. Developing civic purpose in high
246 KIMBALL, MOORE, VACCARO, TROIANO, AND NEWMAN
T
hi
s
do
cu
m
en
t
is
co
py
i
gh
te
d
y
th
e
A
m
e
ic
an
Ps
yc
ho
lo
gi
ca
l
A
ss
oc
ia
tio
n
o
on
e
of
its
al
lie
d
pu
l
is
he
s
.
T
hi
s
a
tic
le
is
in
te
nd
ed
so
le
ly
fo
th
e
pe
s
on
al
us
e
of
th
e
in
di
vi
du
al
us
e
an
d
is
no
t
to
e
di
ss
em
in
at
ed
oa
dl
y.
school may serve as a precursor to collegiate
activism.
Routes to civic activism among college stu-
dents may differ depending on opportunities,
encouragement, and role models for active en-
gagement (Kahne & Middaugh, XXXXXXXXXXBallard,
Malin, Porter, Colby, and Damon XXXXXXXXXXinves-
tigated motivations for civic participation
among ethnic minority and immigrant youth.
This study addressed the possibility that expe-
iences of inclusion or exclusion might influ-
ence the motivation for civic activism (Lopez &
Marcelo, 2008; Sánchez-Jankowski, 2002).
Four motives for civic activism were identified:
helping identity (e.g., I’m the kind of person
who helps others); instrumental motives (e.g., to
further my education); personal issues (e.g., to
do something about an issue I care about); and
weak motivation (e.g., it sounded like fun).
Youth in both political and nonpolitical types of
civic engagement were equally likely to be mo-
tivated by personal experiences and their devel-
oping sense of purpose. Students who were po-
litically active were more likely to agree that
they were upset by something they saw happen-
ing and wanted to take action to express thei
eliefs. This study did not include students with