Social Science & Medicine 184 (2017) 169e177

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Social Science & Medicine

journal homepage: www.elsevier.com/locate/socscimed

Discourse in Action: Parents’ use of medical and social models to resist

disability stigma
Bianca Manago a, *, Jenny L. Davis b, Carla Goar c
a
Indiana University, Department of Sociology, United States
b
The Australian National University, School of Sociology, Australia
c
Kent State University, Department of Sociology, United States

a r t i c l e i n f o a b s t r a c t

Article history: For parents of children with disabilities, stigmatization is part of everyday life. To resist the negative
Received 13 October 2016 social and emotional consequences of stigma, parents both challenge and deflect social devaluations.
Received in revised form Challenges work to upend the stigmatizing structure, while deflections maintain the interaction order.
2 May 2017
We examine how parents of children with disabilities deploy deflections and challenges, and how their
Accepted 5 May 2017
Available online 6 May 2017
stigma resistance strategies combine with available models of disability discourse. Disability discourse
falls into two broad categories: medical and social. The medical model emphasizes diagnostic labels and
treats impairment as an individual deficit, while the social model centralizes unaccommodating social
Keywords:
United States
structures. The social model's activist underpinnings make it a logical frame for parents to use as they
Disability challenge disability stigma. In turn, the medical model's focus on individual “improvement” seems to
Stigma most closely align with stigma deflections. However, the relationship between stigma resistance stra-
Parents tegies and models of disability is an empirical question not yet addressed in the literature. In this study,
Medical and social model we examine 117 instances of stigmatization from 40 interviews with 43 parents, and document how
Stigma resistance parents respond. We find that challenges and deflections do not map cleanly onto the social or medical
models. Rather, parents invoke medical and social meanings in ways that serve diverse ends, sometimes
centralizing a medical label to challenge stigma, and sometimes recognizing disabling social structures,
but deflecting stigma nonetheless.
© 2017 Elsevier Ltd. All rights reserved.

When faced with stigma, do parents of children with disabilities
push back or back down? In doing so, what discursive tools do they
rely on? Parents of children with disabilities are regularly con-
fronted with the stigmatization of their children and themselves. In
response to stigma, parents may engage in stigma resistance,
mitigating experiences of interpersonal, social, and structural
devaluation (Thoits, 2011). We examine how parents of children
labeled with disabilities make sense of, and respond to, disability
stigma. Through 40 interviews with 43 parents who participate in
“disability camps,” we identify 117 stigmatizing encounters and
examine how parents report handling these situations. We analyze
instances of stigmatization on two dimensions: discursive frame
and resistance strategy. Discursive frames vary between the medi-
cal and social, and stigma resistance strategies vary between
* Corresponding author. Department of Sociology, 744 Ballantine Hall, 1020 E.
Kirkwood Ave, Bloomington, IN 47405, United States.
E-mail address: bmanago@indiana.edu (B. Manago).
challenging and deflecting (Thoits, 2011). We offer a unique contri-
bution by analyzing the ways that parents deploy medical and so-
cial framing as tools for both conciliatory and activist forms of
stigma resistance.
Existing research demonstrates that parents of children with
disabilities use both medical and social models to address issues
surrounding disability in the everyday lives of their families
(Landsman, 2005, 2009; Blum, 2015; Davis and Manago, 2016).
However, we do not know if parents of children with disabilities
employ different models for different ends. In this paper, we
consider how parents draw on medical and social models to resist
the effects of stigma. Thoits (2011) posits two forms of stigma
resistance: deflections and challenges. Deflections refer to strategies
that minimize the negative psychological effects of stigmatization
while maintaining the social order. In contrast, challenges refer to
strategies that push back against stigmatizing structures through
political mobilization and/or interpersonal confrontation. While
the former maintains the interaction order, the latter disrupts it.
The social model's activist roots suggest that parents would deploy

http://dx.doi.org/10.1016/j.socscimed.2017.05.015
0277-9536/© 2017 Elsevier Ltd. All rights reserved.
170 B. Manago et al. / Social Science & Medicine 184 (2017) 169e177
a social framework in efforts to dismantle stigma (i.e., challenging),
while enacting a medical narrative to navigatedbut not dis-
ruptdstigmatizing landscapes (i.e., deflecting). However, we argue
that this presumed relationship between disability discourse and
stigma response is an empirical question rather than a foregone
conclusion. Moreover, given burgeoning work within disability
studies more generally, and existing literature on parents of chil-
dren with disabilities in particular, we are suspect of rigid holistic
models as a driving force in parents' everyday lives. Thus, we
investigate the ways that parents invoke, ignore, and reject medical
labels, medical authorities, social-structural arrangements, and
institutional infrastructures in recounting stigmatizing events. By
showing how parents draw on varied available discourses to serve a
diverse set of social and psychological goals, our data demonstrate
the flexibility of stigma resistance as an everyday practice.
1. Literature
1.1. Medical and social models of disability
While researchers and activists have rightfully troubled the bi-
nary between social and medical models, “social” and “medical” do
remain poles on the ends of a spectrum from which we can un-
derstand disability. The medical model of disability, which has
historically predominated in the public imagination, depicts
disability as a deficit from the norm, a malady to be fixed through
physical therapy, technological devices, and personal willpower. In
contrast, the social model of disability resists the medicalized
“personal tragedy” orientation, and advocates instead for an
orientation of social oppression (Oliver, 1990, 1996, 2013; Oliver
and Barnes, 2012). From the social perspective, impairments are
value-neutral bodily conditions, made disabling through a society
which fails to accommodate a wide range of physical, psychological,
cognitive, and intellectual needs (Asch, 1998; Landsman, 2005,
2009; Smith, 2004; UPIAS, 1976). The social model fosters con-
struction of positive identities for disabled people and is instru-
mental in political and legal agendas of inclusion and accessibility
(Oliver, 2013; Shakespeare, 2004; Shakespeare and Watson, 2001).
While the medical and social models of disability sit in political
contrast, in practice, they are not mutually exclusive (Shakespeare,
2004). Of particular relevance here, the entwinement of medical
and social emerges as a theme in research about disability in a
family context. Parents of children with disabilities grapple with
their own internalized cultural values, goals of social justice, a
desire for obtaining the best opportunities for their children, and
the tedious tasks of everyday family life (Blum, 2015; Davis and
Manago, 2016; Landsman, 2005; Leiter et al., 2004). While a so-
cial model would advocate changing disabling structures, critics of
the social model argue that exclusively social framings exclude
bodily experiences and dismiss the role medical interventions play
in improving the lives of disabled people. Thus, parents of children
with disabilities may articulate an understanding of a disabling
society, but adhere to medical protocols of cure and therapy out of
the belief that it is easier to adapt a person than alter the social
structure (Landsman, 2005, 2009). In this vein, research shows that
parents invoke medical causes of disability as a means of explaining
children's atypical behaviors, but also actively negotiate (and
sometimes entirely reject) evaluations from medical professionals
that, they believe, categorize and limit their children erroneously
(Blum, 2015; Leiter, 2004).
1.2. Stigma and stigma resistance
Parents of children with disabilities are confronted with a range
of complex social and institutional dynamics. These involve finding
appropriate educational opportunities, navigating built environ-
ments, and importantly, managing social devaluation and stigma
(Armstrong, 1983; Blum, 2007, 2015; Davis and Manago, 2016; Gray,
2002; Green, 2003; Landsman, 2005, 2009; Leiter, 2007). By stigma,
we refer to a mark that is deeply discrediting (Goffman, 1963), such
that it results in status loss and discrimination (Link and Phelan,
2001).
Stigmatization not only affects persons who bear a discrediting
mark, i.e., primary stigma, but also those with whom stigmatized
persons are connected, i.e., associative stigma (Corrigan et al., 2006).
In families with children who have disabilities, children are the
targets of primary stigma, and their parents experience associative
stigma. However, parents' presumed role in children's outcomes
and their perceived culpability for children's (mis)behaviors place a
degree of primary stigma on parents themselves (Blum, 2007, 2015;
Davis and Manago, 2016; Gray, 2002; Green, 2003). As such, parents
of children with disabilities are occupied with managing stigma on
behalf of their child, managing associative stigma through their
connections to the child, and also, managing primary stigma all
their own.
Although stigma is a product of power differences between the
stigmatizer and stigmatized (Link and Phelan, 2001), stigmatized
individuals and their associates are not simply passive actors.
Rather, those who experience stigma candand dodresist. Stigma
resistance takes two forms: (1) deflecting emaintaining interac-
tional smoothness through cognitive separation of the self from
negative associations with the stigmatizing label, and (2) chal-
lenging e the active confrontation of stigmatizing individuals and
institutions (Thoits, 2011). Thus, while both deflecting and chal-
lenging are forms of resisting stigma's effects, they differ in the
extent to which they disrupt the interaction order. Specifically,
deflection resists stigma while simultaneously maintaining inter-
actional smoothness and reinforcing existing social arrangements.
In contrast, challenging can involve interpersonal confrontation
and political activism that both evokes social discomfort and in-
stigates social change.
1.3. Relationship between forms of stigma resistance and models of
disability
Both stigma deflection and the medical model of disability
operate on the individual-level. That is, they both consist of stig-
matized persons changing something about the self e either
cognitively or physically e in order to function in a society that does
not fully accept them. In contrast, stigma challenging and the social
model of disability push back against existing social arrangements
by demanding change at interpersonal and structural levels.
The social model of disability was born out of activist responses
to hyper-medicalization and presumptions of deficit cast upon
people with impairments (Oliver, 2013; Shakespeare, 2004; Winter,
2003). The social model not only reframes “disability” as a form of
human diversity, but also acts as a tool for social and legislative
change. The seeming opposition between medical and social
models implicitly discounts medical labels and treatment protocols
as instruments of activism. Indeed, disability rights movements
have been largely mobilized around an opposition to medical
frameworks (Winter, 2003). As such, there seems to be a clear and
logical link between the social model as a discursive frame and
challenging as a stigma resistance practice; as well as a link be-
tween medical framing and practices of stigma deflection.
However, disability studies researchers have long troubled clean
distinctions between medical and social models, especially with
regard to experiential realities in the everyday lives of people with
physical, cognitive, and intellectual impairments and their families
(Davis, 2002; Landsman, 2005; Shakespeare, 2004). In this vein, we
 B. Manago et al. / Social Science & Medicine 184 (2017) 169e177
approach the relationship between discursive frames and stigma
resistance strategies as an empirical question that can be answered
by examining how parents manage actual and anticipated stig-
matizing events. We begin with the two main models posited in the
disability studies literaturedmedical and socialdand ask not which
model parents use, but how they use the multiple meanings of
disability to resist stigma.
2. Methods
2.1. Research sites and access
We recruited parents from disability camps located across the
United States. Disability camps are designed to develop the social
and physical skills of campers, and to provide them with improved
self-confidence. That is, they have both medical and social goals for
children with physical, cognitive, and intellectual impairments. For
our purposes, disability camps are good research sites for both
practical and theoretical reasons. Practically, camps provide a
diverse sampling pool both in terms of socio-demographics and
children's disabilities. Additionally, the camps present a rare occa-
sion during which parents of children with disabilities have respite,
allowing parents who are often busy with childcare duties to
participate in interviews. Theoretically, camps are useful sites for
data collection because families who participate necessarily define
their children's impairments as a mark of difference. Indeed, the act
of camp enrollment is a form of managing cognitive, intellectual,
and/or bodied difference, making parents who enroll their kids in
camp ideal subjects for analyzing the disability related stigma ne-
gotiations of everyday family life.
Drawing a sample from parents who choose to attend disability
camps, however, does present limitations with regard to general-
ization. Patterns of stigma resistance (both deflection and chal-
lenging) among our sample may be an effect of self-selection bias
among those who attend disability camps and also, may arise
through the conditions of camp participation. For instance, camps
typically offer programming, both social and medical in nature, to
help teach children how to succeed (and in many cases, fit more
comfortably) in a world that may not be accommodating to them. In
this way, families who attend disability camps may be dispropor-
tionately likely to engage in deflection strategies. At the same time,
camps may be an important site of community building, uniting
families in mobilization efforts and fostering stigma challenging.
Thus, although a camp-based sample gives a rich picture of the
complex ways that parents entwine stigma resistance with mean-
ings of disability, we caution against blanket generalizations.
Instead, the broad patterns that emerge may be applied and
tweaked through empirical study of differently situated
populations.
Upon receiving institutional review board approval, we atten-
ded six disability camps as researchers and volunteers from 2012 to
2014. Camps were located in three regions of the United States e
the Southeast, Southwest, and Midwest. Some camps were
weekend-long overnight respite camps that included programming
for the entire family whereas others were week-long daytime-only
camps with programming for campers with disabilities exclusively.
Most camps were hosted by private non-profit organizations, but
one camp was run by a government agency (see Table 1). Camps
were run by at least one director who was an employee of the
sponsoring organization/agency, and several volunteers, some of
whom were parents and others who were usually high school and
college students. At any given camp, about 1/3 of campers received
some amount of scholarship or aid to attend. Camps included a
schedule of activities ranging from karaoke and ice cream socials to
equine physical therapy and social skills sessions.
171
To gain access to parents, we contacted camp directors, asking
for entre to camp. If camp access was granted, we emailed the list of
parents signed up for camp, letting them know of the interview
opportunity and inviting them to contact us directly to participate.
In addition, we gave a brief speech at the beginning of camp, where
we explained our research, fielded questions, and invited parents to
contact us to arrange an interview time. Researchers ensured par-
ents that their participation: (1) was entirely voluntary, (2) would
not affect their families’ camp involvement in any way, and (3)
would remain confidential. To maintain participant confidentiality,
all names are pseudonyms.
2.2. Research sample
Although all parents were invited to participate, mothers are
vastly overrepresented. This bias towards mothers is well-
documented in other parental research settings (Green, 2003;
Landsman, 2005, 2009); and is perhaps unsurprising, given
gendered divisions of household labor. The families we interviewed
represent a wide cross section of the population, ranging in both
the sociodemographic characteristics of parents, and the type and
extent of children's disabilities (see Table 2). In our sample, we have
parents experiencing unemployment and others with established
careers, families that identify as White, Black, Latino, and multira-
cial, and education ranging from high school to multiple graduate
degrees. In addition, our respondents represent many different
family forms; for example, we interviewed single parents, same-sex
couples, older parents, married and divorced parents, parents in the
military, interracial couples, adoptive parents, and biological
parents.
Parents often had more than one child. In many instances, only
one child had any impairments. In other families, all of the children
identified as disabled (see Appendix A). Children in our sample had
physical, cognitive, intellectual, and/or behavioral impairments,
sometimes in combination. Additionally, children in our sample
had impairments that were both visible, such as cerebral palsy and
Down syndrome, and invisible, such as autism and attention deficit
hyperactive disorder (ADHD). A portion of the sample adopted one
or more of their children with disabilities (15.2%). Additionally,
eight of the children were of minority racial or ethnic status, four of
whom were adopted by white parents. In our analysis, we
contextualize the data by connecting each reported passage to a
corresponding demographic profile in Table A1.
2.3. Parent interviews
The authors conducted 40 interviews with 43 parents at
disability camps. During the interviews, we asked parents to recall
the process of acquiring the disability label for their children,
including their own reactions as well as the responses of family and
friends. We also asked parents how they understand disability, how
they talk about disability with their children, and how they teach
their children to navigate difficult social circumstances. Finally, we
asked parents about moments of social discomfort surrounding
their children's disabilitiesdwhat happened, how they felt, and
how they responded.
Interviews were conducted in-person and lasted between 36
and 94 min. Participants signed an informed consent form at the
time of the interview and either agreed or declined to audio-
recording the session. The interview process was highly reflexive,
as interviewers practiced “deep listening,” offering empathy and
reciprocal sharing with participants (Atkinson, 2001). Such tech-
niques are useful in narrative analysis, with researchers taking on a
participatory role, eliciting the rich stories that participants tell
about themselves (Atkinson, 2007; Geertz, 1983). The researchers
172 B. Manago et al. / Social Science & Medicine 184 (2017) 169e177

Table 1
Camp information.

Funding Agency Region of United States No. of Interviews Overnight/Day-time Year Attended

Camp 1 Public Southwest 9 Overnight 2012

Camp 2 Public Southwest 4 Day 2012
Camp 3 Public Midwest 7 Day 2013
Camp 4 Private Midwest 5 Day 2014
Camp 5 Public Southeast 8 Overnight 2014
Camp 6 Public Southeast 7 Overnight 2014

Table 2 some which diverged. We treated each stigmatizing encounter as

Family demographics. the unit of analysis. Treating encounters as the unit of analysis
Parent (N ¼ 43)a Child (N ¼ 65)
allowed us to document multiple incidents within each interview,
and maintained an interactionist approach to the data. Each
Race/Ethnicity % Race/Ethnicity %
encounter encompasses the entirety of an interaction team (parent,
White 90.7 White 88.7
Black 7.0 Black 9.2 child, and stigmatizer) and thereby represents a social dynamic
Hispanic 2.3 Hispanic 6.1 that resonates with the inherently social and interactive process of
Asian/Pacific Islander 0.0 Asian/Pacific Islander 0.0 stigmatization (Goffman, 1963; Link and Phelan, 2001).
Gender Gender
The second phase of analysis focused on how parents' discursive
Woman 83.7 Girl 38.5
Man 16.3 Boy 61.5
choices served different strategies of stigma resistance. Thus,
Marital Status Disability Statusb focusing on parents’ experiences of stigma encounters, we coded
Partnered 2.3 ADHD/ADD 13.8 their responses on two dimensions: discursive framing, and stigma
Married 79.1 Autism/Asperger's Syndrome 26.2 deflections versus stigma challenges. This produced four categories
Single 18.6 Down Syndrome 2.0
of response: passages that framed the disability in medical terms
Cerebral Palsy 10.8
Other 24.6 and adapted to the stigmatizing treatment (medical deflection);
Average No. of Children in Family 1.8 passages that framed the disability in medical terms and combatted
Percentage of children adopted/family 14.7 the stigmatizing treatment (medical challenging); passages that
a
There are different numbers of interviews, parents, and children because one framed the disability in social terms and adapted to the stigma-
interview may have included more than one parent, and these parents may have tizing treatment (social deflection); and passages that framed the
had more than one child. disability in social terms and combatted the stigmatizing treatment
b
Percentages do not add up to 100% because many children had more than one
(social challenging). Because our unit of analysis is each instance of
disability.
stigmatization (N ¼ 117), rather than each interview (N ¼ 40) or
participant (N ¼ 43), individual interviews coulddand indeed
recorded and transcribed all but one interview. One parent opted diddinclude medical and social discourse, stigma challenging,
not to have her interview recorded, and in this case, the interviewer stigma deflections, and combinations of discursive models with
took detailed notes during and immediately following the resistance strategies. We tagged codes using Atlas.ti qualitative
interview. analysis software (Table 3).

2.4. Analytic strategy 3. Results

We approached the data through abductive analysis, a process
designed to lead researchers “away from old to new theoretical
insights” (Timmermans and Tavory, 2012, p.170). Abductive anal-
ysis capitalizes on the strengths of deductive methods by asking
researchers to enter the field with a broad and deep theoretical
foundation. It couples this theoretical foundation with traditionally
inductive techniques (e.g., iterative analysis, defamiliarization, and
triangulation through critique and debate). In doing so, an abduc-
tive approach pushes against existing theories in ways that reveal
novel observations and theoretical formulations through deep
engagement with empirical data (Tavory and Timmermans, 2014;
Timmermans and Tavory, 2012).
In this project, we began with an understanding of: (1) the
relationship between the social and medical models of disability,
and (2) the use of challenging and deflecting to manage stigma. The
abductive approach helped us transcend strict binary categories to
understand the surprising and insightful ways parents combine
strategies and discourses to traverse a stigmatizing social climate.
In accordance with abductive techniques, we analyzed the data in
two main phases (Tavory and Timmermans, 2014; Timmermans
and Tavory, 2012).
First, all authors read through the interview transcripts, iden-
tifying common themes, many of which aligned with past research
and literature on stigma resistance and models of disability, and
We coded data for variations in disability discourse (medical
and social) and variations in stigma resistance strategies (chal-
lenging and deflecting). In line with disability studies scholars who
contend that medical and social understandings of disability co-
exist in the lives of disabled people and their families, our data
reveal that parents deploy elements of both medical and social
models, invoking each as they deem fit (Fig. 1).
Overall, parents deflected and challenged stigma at almost equal
rates (n ¼ 62 and n ¼ 56, respectively). However, parents invoked
the social components of disability (n ¼ 89) far more frequently
than they emphasized medical labels or treatment protocols
(n ¼ 29). The most common combination in our data was parents’
use of social meanings to deflect stigma (n ¼ 53), followed by using
social meanings to challenge stigma (n ¼ 36). When parents did
pull from medical discourse, they did so most often as a tool to
challenge stigma (n ¼ 20), and only occasionally emphasized
medical components of disability when deflecting stigma (n ¼ 9)
(see Fig. 1). This pattern was true for both invisible and visible
disabilities (Appendix B).
3.1. Deflecting stigma
The practice of stigma deflection smooths the social interaction
while preserving both the self and the existing social order. That is,
 B. Manago et al. / Social Science & Medicine 184 (2017) 169e177
Table 3
Combinations of stigma resistance techniques with models of stigma.
Social
Challenging - Education about society/laws
- Calling out behavior as unacceptable
Deflection - Apologizing
- Passing
- Avoiding
60
53
50
40 36
30
20
10
0
Social
Deflection
Fig. 1. Resistance technique breakdown by model of disability.
stigma deflection is a practice by which parents minimize negative
consequences of stigmatization, but do not address the stigma-
tizing social structure. Parents invoke both medical meanings and
social arrangements when engaging in stigma deflection.
3.2. Medical deflection
We found 9 instances of parents emphasizing the medical
component of disability while managing stigma through deflection.
The small size of this subsample is particularly surprising, given
that the medical model, which emphasizes medical labels and
moralizes treatment protocols, most closely aligns with individu-
alist understandings of disability that do not make demands of
structural level change. However, while some parents deflect
stigma in ways that do closely approximate “medical model” tenets,
we also see them highlight medical labels without tacking those
labels to social deficit, and soliciting medical treatments on their
own terms. Thus, parents extract medical meanings from the
strictures of a bounded model, deploying those meanings in myriad
ways to deflect stigma. Richard, the father of 7-year old Stefan,
describes his son's struggle to fit in socially. In response, the parents
hired a behavioral therapist to teach Stefan how to engage in social
interactions in a manner that others both expect and find
comfortable.
SteStSssssStefan's like “I don't think people like me […] because
I can't connect with them and I'm really not good at
conversations.”
[…] And so, we've done things like, on top of the occupational
therapy that he gets here, we go to a behaviorist.
The behaviorist is working on conversational chains […] she'll
have a group of Legos in a cup and start a conversation and then
if Stefan keeps the conversation right they can take a Lego and
they're trying to get all of the Legos out of the cup. And if he
173
Medical
- Education about disability
- Informing of reason for behavior
- Behavioral Modification
- Medical Modification
20
9
Medical
Challenging
doesn't, or gets stuck in a repeated loop, then the Legos don't
come out …. So, we're trying to teach him that way.
Similarly, Abigail defines her daughter's speech apraxia as a
medical problem, and strives to correct it before “sending her
out into the world.”
And [our speech pathologist] knew someone, a man, was who
was a stutterer and she said he was … very intelligent like PhD
or something. And she said, I'll never forget this she said, “He
was like a giant in chains”. […] And if you are a parent of a kid
with a special need, you are homeschooling too. They are going
to school and you are homeschooling too, because there's no
way we're going to hit these marks if we're not hitting it hard at
home.
Abigail interprets the stigma associated with disability as
something that can be avoided through individual self-devel-
opmentdin this case, informal schooling beyond the normal school
day. Later in the interview she continues:
And your job is to educate the whole kid and you're going to
turn this kid out into the world maybe who can't talk, who can't
read, who can't you know and it's just like and “You're ok with
that?” It's mind numbing because how she is perceived will
affect how people treat her.
Both of these parents deflect stigma by minimizing the distance
between their children's public displays and socially expected
norms. Deflection is achieved through medical intervention, by
which the parents engage their children in therapies to improve
perceived physical and social deficiencies. Like the medical model,
these families' therapeutic approaches work towards approxi-
mating the “typical” brain and body. However, both of these par-
ents diverge from the medical model in significant ways, even
174 B. Manago et al. / Social Science & Medicine 184 (2017) 169e177
when invoking medical meanings and pursuing medical services.
For Stefan's father, Richard, the impetus for behavioral therapy
came from Stefan himself, thereby validating the boy as a full
person whose requests and needs deserve accommodation.
Through this validation, Stefan was not treated as an object to be
“fixed” through medical means, but rather, a subject who actively
participates in his own trajectory. In this vein, Abigail's decision to
enroll her daughter in intensive speech therapy, though explicitly
adopting the concerns of a medical authority, also indicates a clear
agenda of empowerment. Abigail roots her medical approach in
social factors (“how [my daughter] is perceived will affect how
people treat her”) and indeed, is dedicated to ensuring that her
daughter has, in a literal sense, a voice in the world.
When parents draw on medical meanings to deflect stigma, they
emphasize the medical component of disability, and locate the
solution in therapeutic medical intervention. Parents take on the
responsibility of helping their children more closely approximate
normative standards, and do so through a medicalized lens. High-
lighting the medical component of disability while engaging in
stigma deflection reflects parents' knowledge of, and response to,
cultural and institutional expectations that value “normal” bodies
and minds. At the same time, the way that parents deflect through a
medical lens often pushes back against definitions of disability
rendered in the medical model. As exemplified through the parents
above, medical leaning deflections can derive from and manifest in
children's empowerment. In the case of medical deflection, treating
the whole child, on their own terms, may mean following con-
ventional medical pathways and adhering to normative cultural
standards.
3.3. Social deflection
In contrast to instances of medical deflection, parents' use of
social deflection indicates more explicitly that these parents do not
“buy in” to ableist norms. They do, however, choose not to chal-
lenge these norms in particular moments of stigmatization. We
identified 53 cases, the most common in our sample, in which
parents articulated an understanding of the social causes of
disability, but deflected stigmatization rather than challenging it.
These parents recognized the problematic social structure, but
worked within that structure nonetheless. When deflecting stigma,
parents in this subsample shared private moments of anger, as-
sessments of social inequality, and also, the decision to stay quiet,
or to circumvent stigmatizing encounters. Parents avoided stigma
by steering clear of circumstances that would highlight their chil-
dren's impairment, and/or by helping their children “pass” as
“normal” (Ginsberg, 1996; Renfrow, 2004). For these parents, “ef-
forts at normalization” did not “preclude understanding the social
model of disability” (Landsman, 2005:135).
Lauren describes how she ignores the stigma that ensues when
her 15-year-old son with autism has a meltdown or “tantrum.”
Elliott is pretty big for his age and he still has temper tantrums
like a 2-year-old. … there were a few times where he would get
upset and throw a screaming fit on the floor at Wal-Mart or
something and um … you know, people will of course gawk, and
look, and make comments and um … I just developed this
strategy where I do not make eye contact with people when this
happens. I refuse to make eye contact with people. I don't care if
they're gawking and staring […] I will not see it because I'm not
making eye contact. […] I don't get embarrassed anymore … you
know … because … I just don't.
Lauren does not feel embarrassed and instead, places the
problem with the onlookers, rather than with her family. That is,
she understands the social reasons that a trip to Wal-Mart is
difficult with a teenager on the autism spectrum. At the same time,
she does not confront those who gawk, maintaining smoothness in
the interaction order. By deflecting in this way, Lauren avoids
causing social discomfort for those staring, for the other patrons of
the store, and for herself and her family.
While Lauren deflects stigma by ignoring stigmatizing agents,
two mothers below, Courtney and Christine, avoid stigma by
crafting situations in which their children's differences remain
inconspicuous, even while recognizing that the need to do so is
rooted in others' problematic attitudes.
Courtney: […] Sometimes other children will talk and say they
have ADHD. And I know it sounds bad but I have taught him not
to tell people that he has a disorder. So, they will sit there and
talk about it and he will sit there and listen like he doesn't know
or have it.
Interviewer: And why did you tell him not to tell other people
that he has ADHD?
Courtney: So that people will not tease him or make fun of him
or put him down or anything like that.
Courtney actively teaches her son to avoid stigma by “passing,”
or concealing his ADHD diagnosis. Passing is available to the family
above because ADHD does not have clear visible indicators.
Although passing is not as readily available to children with visible
impairments, some parents still negotiate ways to hide their chil-
dren's “discrediting mark.” For example, Christine selects clothing
for her son that conceals his leg braces.
And so, for the first couple weeks [of school], even though it was
really, really hot, we had him wear long pants and jeans, just
that way it would get covered, that way he wouldn't have to be
bombarded with the “what is that on your legs?” … you know,
“what is that … what is that?”
However, clothing cannot always hide disability indicators, such
as wheelchairs or distinct facial features. Similarly, for children
whose cognitive or intellectual impairments reveal obvious atyp-
ical behavior, methods for passing are limited. Those parents who
cannot help their children “pass” can still, however, deflect stigma
by avoiding stigmatizing encounters, as shown by Brianne, a
mother of two children with Down Syndrome.
Interviewer: Do you feel as though [your children], either one,
experiences discrimination by others?
Brianne: Hmmmm. I think I probably don't put them in situa-
tions where they would. And, I think up to this point, that's been
successful to not put them in … I think that would I expect it and
so I've been … I try to do the work in advance. You know like,
both of them go to like special schools now. So, basically, the
whole model is to meet their needs and the typical kids that are
included there, are there because they know how to interact
with them and are learning not to discriminate.
Brianne describes not confronting, but rather, avoiding stigma
by going to safe spaces, where she can ensure her children will not
be discriminated against. In doing so, she recognizes that stigma is
socially embedded and centralizes her children's psychological
wellbeing in schooling decisions. While Brianne's deflection leaves
the social structure relatively intact, it also, like the parents in the
medical deflection section, derives not from a desire to make others
 B. Manago et al. / Social Science & Medicine 184 (2017) 169e177
comfortable, but from a commitment to the needs of the children
themselves.
Parents use both medical and social meanings of disability for
purposes of deflection. The culture of ableism clearly informs par-
ents' use of medical frameworks to minimize the effects of stigma
upon their families, yet parents' use of medical labels and treat-
ment protocols can also reflect their deep respect for children's
stated needs and a desire to instill the tools for empowerment.
When parents pull from the social model, they recognize the
disabling nature of an exclusionary society. However, these parents
elect to manage ableist social structures by adapting the child and
the family, leaving the interaction order intact. Drawing on social
meanings of disability for purposes of stigma deflection represents
a previously documented reality in which parents, driven by an end
goal of their families' wellbeing, find it more practical, in particular
moments and under certain sets of circumstances, to change the
child than try to change the world (Landsman, 2005, 2009).
3.4. Challenging stigma
The key difference between stigma deflections and stigma
challenges is the way each relates to the social structure. Stigma
deflections, as shown above, reinforce the social structure (at least
ostensibly), by navigating within it. In contrast, stigma challenges,
like those we delineate below, are moments of activism in which
stigmatized subjects refuse to accept existing social arrangements.
At the level of interaction, deflections maintain the smooth flow of
a situation while challenges can cause a disruption. That is, de-
flections require stigmatized persons to absorb the social discom-
fort and potential inconvenience of a marginalized position, while
challenges place the burden of embarrassment, discomfort, and
inconvenience on those people and institutions that enact stig-
matization. For parents in our study, the decision to push back often
means confronting strangers, friends, business owners, and legis-
lators whodperhaps unknowinglydperpetuate prejudice and so-
cial exclusion.
3.5. Social challenging
Historically linked to activist movements, the politics of the
social model of disability dovetail with the practices of stigma
challenging. We identified 36 instances in which parents invoked
social meanings of disability to serve activist ends. Parents who
challenged stigma through a social lens of disability did so by
asserting that the basis of the “problem” is society, not the child,
and pressing for social change. Stigma challenges played out in
response to both inaccessible infrastructures and also, everyday
interpersonal encounters. One mother recounts:
Mary: So, she wanted to go to I-Hop. You couldn't get there. …
there was no way in the restaurant, except you go way around
and weave through the bar. Of course, it's an older hotel but still
… there's all that everywhere.
Interviewer: And how does Emily [Mary's daughter] respond to
these situations?
Mary: She gets kind of frustrated, like, “Ahhh man!” she'll say.
But then most of the time we'll say, “We'll find a way.” Because
we want her to be aware, that because in her lifetime she may be
an advocate for more physical changes and properties. And we
said, “We can make it though, we'll find a way. We'll tell the
people that we need to change that.”
Mary defines the built environment, not Emily's impairment, as
175
the root cause of their difficulty navigating the hotel. She then re-
sponds to this inaccessible venue by insisting that the family find a
way in and informing the hotel owners that they “need to change”
the architecture of the establishment, referencing a future advocacy
role for her daughter.
Invoking social meanings to challenge stigma in an interper-
sonal context, Karen corrects those who underestimate her 21-
year-old son Robert, who has Down Syndrome and is on the
autism spectrum.
And a lot of times I think it's people's perception. They'll say “oh
he can't” and then I'll have to stop and say “You know what? He
really can.” And then when we give him the time and the umm
freedom to do it, he does. So, I think it's just the disability is in
others. You know, constantly trying to show them, you know,
give him a chance. So, to me that's a disability, not anyone else's,
it's just the perception of others.
Karen clearly identifies the source of disability and stigma in
others, rather than in her son or his diagnoses. She actively chal-
lenges others' diminished expectations and insists on providing the
cognitive resources her son needs (time and freedom) to fully
participate in society. At the same time, she does not shy away from
her son's difference. Rather, she embraces that difference and
presses for accommodation.
Social meanings of disability also serve activist ends during
everyday public encounters. Tamara, who is raising one “typical”
son and one son with cognitive and intellectual impairments, re-
counts how her neurologically typical son corrects those who use
disparaging and ableist language.
But I will say that one thing we don't allow is for … anyone to
say that Hunter is (lowers voice) “retarded” e we don't say that
word. There have been times when [his younger brother] is on
the soccer field or hanging out outside and a kid will say that
and he will say “Hey that's offensive, we don't talk like that.”
This exchange implies that the family discusses social issues
regarding neurological diversity and actively rejects language that
denigrates those who fall outside “normative” categories. More-
over, the “typically” developing son displays a willingness to
disrupt smooth interaction and even embarrass his teammates and
friends to challenge the stigma they leverage against his brother
(and against people with cognitive or intellectual impairments
more generally).
3.6. Medical challenges
The medical model represents the discursive frame against
which activist movements arose, yet parents in our study centralize
medical labelsda component of the medical modeld in ways that
disrupt smooth interpersonal interaction and challenge the inter-
action order. We identified 20 cases of parents invoking the medical
component of disability to challenge stigma during tense encoun-
ters. In these instances, medical meanings offered a sense of
legitimacy for the child and the family. By informing stigmatizers of
their children's medical label, parents insisted on accommodation,
and at times, embarrassed those who stared or otherwise passed
judgment.
Rebecca recalls an incident at the Kennedy Space Center with
her daughter Melissa, a young girl on the autism spectrum:
Probably the worst, we were on vacation in Florida and we had
gone to Kennedy Space Center and it was hot. […]
176 B. Manago et al. / Social Science & Medicine 184 (2017) 169e177
It's a hundred and two in the shade and she's been hanging on
you all day and everybody's tired and crabby, and so we go into
this huge big theater, and all the noise and sounds, and she just
lost it. I mean, complete meltdown, screaming, kicking. So, my
husband takes her out, because he knew I'd had her all day. […]
So, you know, she's screaming bloody murder, and this couple in
front of us, […] said “Oh, what a brat. Dad just needs to spank
her.” Well, Mom was at wits end at that point in time, so I leaned
up between the two of them and said, “She has autism, you don't
know what you're talking about, you need to keep your mouth
shut until you know what you're saying.”
Rebecca invokes autism (a medical label) to challenge strangers’
not-so-subtle negative evaluations of her daughter and presum-
ably, of the parents themselves. In this instance, the medical label of
autism carried with it the social expectation of accommodation, a
social expectation that the snickering couple learned they had
violated. By calling out this violation, Rebecca engaged in a stigma
challenge, disrupting the smooth flow of interaction and placing
the burden of social discomfort upon the stigmatizers.
By asking people who stare at her 22-year old son with Leigh's
syndrome, “What are you looking at?”, Claire also engages in
interpersonal stigma challenges. In her narrative, Claire highlights
the family's involvement with a Leigh's syndrome organization,
and equates her son's experiences with those of her own mother's,
who had Multiple Sclerosis. In the passage below, Claire describes
the ways that she combats social stigma and disabling
environments:
My mom was disabled, she had MS (Multiple Sclerosis), so we
were used to, we used to run into the same thing with her. And
she would take her cane and kind of tap and say “excuse me, this
is really difficult for me to get into.” And I think you have to keep
doing that because that's the only way you kind of open people's
eyes. But yeah, we do a lot of advocacy, we're involved in a
foundation for his disease, we're involved in Special Olympics …
So yeah, I take every opportunity I can to try to spread the
message, or to educate people.
The medical diagnosis plays a central role in how Claire makes
sense of her son's impairments, as evidenced by her equation of his
experiences with those of her own mother's MS diagnosis, as well
as her involvement with disability-specific organizations. The
medical label is thus empowering in this regard, enabling
connection and community-building centered around a specific
medical label (i.e., Leigh's syndrome) and the broader disability
experience (e.g., Special Olympics). Such connection resonates with
the “extended kinships” that researchers have shown to emerge
through diagnosis, in which families forge intimate and meaningful
bonds based on shared medical labels (Rapp and Ginsburg, 2011),
finding strength in these bonds to mobilize towards activist ends
(Lewis, 2016; Silverman, 2012). Strengthened by her networks, and
giving strength to the communities in which she participates, Claire
pushes back against inaccessible infrastructures and against those
who remain naive to the needs and lived experiences of people
with impairments like her son's. At the same time, Claire reports
that the Leigh's Syndrome group also mobilizes towards improving
care, treatment, and ultimately, detection, prevention, and cure.
Medical labels and pathways are thus held together with activist
goals and insistence upon social accommodation.
Parents in this subsample deploy a medical framework towards
activist ends. The coupling of medical meanings with stigma chal-
lenges troubles the designation of the social model as the premier
tool of activism and instead, demonstrates the way a full arsenal of
tools can be deployed in efforts to create an inclusive social struc-
ture (Shakespeare, 2004). The use of medical framing towards
activist ends offers a particularly sharp case for the expansion and
entwinement of multiple models of disability, as multiple models
clearly hold purchase in the everyday lives of families living with
impairments.
4. DISCUSSION/CONCLUSION
Early work in disability studies and disability activism identified
a compulsory medical model of disability and offered the social
model as an oppositional perspective. However, because the social
model largely ignores the embodied reality of individuals with
impairments, a move in disability studies suggests that the social
perspective is not, and cannot be, a grand theory of disability.
Rather, the tenets of the social model of disability offer one puzzle
piece in understanding the experiences of impairment and creating
optimal conditions for those whose bodies and minds fall outside
normative parameters. The porousness between medical and social
is certainly clear in our data. In the lives of real families, medical
and social models quickly come unbound, with parents unaffected
by intellectually drawn distinctions. Instead, parents deftly extract
the multiple meanings wrapped up in social and medical models,
deploying these meanings for strategic, affective, and practical
ends. Our data thus resonate with burgeoning claims among
disability scholars and activists that neither model encompasses
the entirety of the disability experience.
In addition, our findings advance disability studies scholarship
through a theoretical and empirical synthesis with stigma studies.
Despite the move within disability studies to reintroduce physical
and medical components as entwined parts of the disability
experience, a seemingly uncontested truth remains that framing
disability in social terms is the primary vehicle for activism. Our
data suggest that while parents do centralize the social causes of
disability for activist ends, the pairing between social framing and
activism captures only a fraction of the story. We also see parents
invoke medical frameworks to push back against stigma and de-
mand accommodation, as well as assenting and adapting to stig-
matizing treatment, even while recognizing the ways that the social
structure disfavors their children and their families.
Our findings are unique in their examination of moments of
stigmatization and our synthesis of disability discourse with stigma
resistance practices. The data, i.e., moments of stigmatization from
parents’ accounts, show not just which discursive models parents
use to understand disability, but how they deploy, subvert, and
combine facets of these models in the face of stigmatization. The
four subcategoriesdmedical deflection, medical challenging, social
deflection, and social challengingddemonstrate the complex ways
that parents navigate cultural definitions and social arrangements
that value “normative” bodies and typical minds.
In stigmatizing encounters, parents most often invoked social
understandings of disability. However, recognizing the disabling
social structure did not always result in a challenging response.
Rather, parents at times responded to social oppression by adapting
themselves and their families rather than disrupting the interaction
order. Parents' decisions to deflect instead of challenge stigma can
be driven by both children's needs and also, the practicality of
making it through the day, and getting on with the business of
living. At other times, however, parents did push back and chal-
lenge stigmatization. In challenging stigma, medical discourse
played a significant role alongside parents' social structural orien-
tation. Parents cited medical diagnoses to censure those who
passed judgment (e.g., “She has autism … you need to keep your
mouth shut!”), and to legitimize requests for accommodation (e.g.,
 B. Manago et al. / Social Science & Medicine 184 (2017) 169e177
he needs “more time and freedom”).
These findings contribute to the stigma literature by demon-
strating how culturally available discourses both inform, and are
molded to, stigma resistance practices. The data suggest a distinct
flexibility in the ways that stigmatized persons pull from their
cultural tool kits (Swidler, 1986, 2001) deploying the available tools
in creative and sometimes unexpected ways. Indeed, the parents in
this study did not exclusively challenge nor exclusively resist stig-
matization. Rather, they challenged in some moments, and acqui-
esced in othersdextracting from medical and social models of
disability towards each end as they deemed fit.
A key strength of our sample is that it includes families with
children who have physical, cognitive, intellectual, visible and
invisible disabilities, and a range of family structures. The emer-
gence of clear patterns across a varied sample strengthens our
point: discourse and practice can blend and re-mix in a variety of
ways. To make this point, we analyzed the sample as a holistic
group. However, the specific conditions of each impairment, and of
each family, certainly affect the disability experience (Blum, 2015).
By connecting each reported passage to a corresponding de-
mographic profile (Appendix A), our analysis tells a broad theo-
retical story while remaining grounded in the empirical
particularities of diverse participants.
As with all studies, our research design comes with certain
limitations. In particular, our use of U.S. based camps as a sampling
pool narrowed the scope of the data. Indeed, research shows that
both disability experiences (Blum, 2015) and stigma experiences
(Manago, 2015; Pescosolido et al., 2008) vary by cultural and socio-
political contexts. Future work can usefully apply our findings and
adapt them through empirical study of persons and families
outside of the U.S. context and among parents who do not, or
cannot, participate in disability camps. Additionally, our unit of
analysis e i.e., stigmatizing encounters rather than parents' full
narrativesdleaves room for future work to examine how parents
select strategies based on their family's own characteristics and/or
the type of stigmatizing encounter.
Funding
We would like to thank Jane Sell for her insightful comments
during this research project. In addition, we would like to thank
Indiana University, Kent State University, James Madison Univer-
sity, and Texas A&M University for financial and institutional sup-
port on this project. This project received funding from the
American Sociological Association and National Science Founda-
tion's Fund for Advancement of the Discipline.
Appendix A. Supplementary data
Supplementary data related to this article can be found at http://
dx.doi.org/10.1016/j.socscimed.2017.05.015.
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