Historical perspectives on studying families of children with

disabilities: A case for critical research

Priya Lalvani Assistant Professor, Montclair State University E-

mail: lalvanip@mail.montclair.edu

Lauren Polvere Douglas Mental Health University Institute E-

mail: laurenpol@yahoo.com

Keywords:

families, children with disabilities, narrative inquiry, disability studies, critical

disability theory, qualitative methodology

Abstract

Historically, research on families of children with disabilities has been framed

by the medical model, which views disability as a biological deficit, necessarily

associated with burden and grief. This body of research does not

acknowledge the sociocultural contexts in which the meaning of disability is

embedded, or the manner in which deficit-based hegemonic discourses shape

the familial experience of having a child with a disability. In this paper, we

problematize the medicalization of the phenomenon of disability and resulting

research inquiries. We propose the use of narrative inquiry, theoretically

grounded in sociocultural perspectives, as a critical research methodology for

situating the lives of these families in cultural and sociopolitical contexts.

Narrative inquiries complicate conclusions drawn from the medical model and

contribute to new insights on the ways in which interpretations of having a

child with a disability are mutually negotiated between individuals and society.

Introduction

Families of children with disabilities have long held the scrutiny of researchers

and professionals. Dominant discourse on families of children with disabilities,

based on assumptions of grief, tragedy, and unmitigated hardship, are

strongly influenced by the medical model, which constructs disability as a

deficit and as predominantly burdensome for both individuals and families.

Historically, this deficit-based construction of disability has informed the

questions and methodologies in research concerning these families. Rather

than examining whether parents of children with disabilities experience

significant stress or chronic grief, medical-model based studies begin with

assumptions of pathology and seek to evaluate the extent of psychological

distress. Additionally in research based in medical model perspectives, the

source of the psychological distress experienced by parents is located in their

children's impairments. Conspicuously absent from these studies is reflection

on the sociocultural constructions of disability, and the contexts in which the

experiences of families are situated. These inquiries also fail to consider how

pervasive, deficit-based hegemonic discourses on disability contribute to

familial stress and other negative emotions. The perspectives of families of

children with disabilities are not represented in this research, as familial

experiences are reduced to statistical analyses of negative outcomes.

In this essay, we trace the methodological history of studying families of

children with disabilities and situate traditional research in this area in the

context of underlying cultural beliefs about disability. Our argument is

presented systematically in three sections. In the first, we outline the historical

medicalization of the phenomenon of disability and discuss dominant cultural

narratives about families of children with disabilities. In the next, we argue that

there is an urgent need to deconstruct "knowledge" about these families by

problematizing the research methodologies used in the generating of this

knowledge. Finally, we propose the use of narrative inquiry, theoretically

grounded in sociocultural perspectives, as a critical research methodology for

exploring the experiences of families of children with disabilities in a

meaningful way. We argue that narrative inquiries situate the lives of these

families in cultural and sociopolitical contexts, complicate conclusions drawn

from medical model-based research, and contribute to new insights on the

ways in which interpretations of having a child with a disability, and of

disability itself, are mutually negotiated between individuals and society.

Pathologizing families of children with disabilities

The Medicalization Of Disability

The term medicalization refers to the identification of a behavior or condition

as a medical problem that requires treatment or therapeutic intervention from

medical professionals (Conrad, 2004). To a large extent, conditions that

become medicalized are influenced by, and in turn influence, prevailing beliefs

and values in society. The medicalization of any condition becomes an

effective tool for social control; as such, defining that which is different as a

medical problem legitimizes certain actions that would otherwise not be

considered (Conrad, 2004; Foucault, 1965). Consequently, medical and

mental health professionals become agents of social control charged with

protecting the "good of whole society," and curtailing the rights of those who

deviate is legitimized based on "objective" science (Foucault, 1965).

The medicalization of disability had its beginnings in the rehabilitation

movement. The period between 1890 and 1920 is distinctive in disability

history; it was during this time that 19th century beliefs in the supernatural

causes of disability gave way to medical interpretations of disability and to the

identification of disability as a social and economic problem (Byrom, 2004).

The legacy of the rehabilitation model forms the core of what disability studies

scholars currently refer to as the medical model. The medical model lends

scientific credibility to the assumption that the source of the "problems" related

to disability is located within the individual body, thereby absolving society of

any complicity in the lived outcomes for people with disabilities (2004).

According to Linton (1998), "The medicalization of disability casts human

variation as deviance from the norm, as pathological condition, as deficit, and,

significantly, as an individual burden and personal tragedy" (p. 11).

Furthermore, she argues that society, colluding to keep the issue of disability

"within the purview of the medical establishment," reifies the idea that what

needs to be "treated" is the individual with the disability, rather than "the social

processes and policies that constrict disabled peoples' lives" (1998, p. 11). In

medical model perspectives, disabilities are equated with a poor quality of life

and are viewed as limitations to be "fixed" or overcome (Saxton, 2000).

Focusing on the biological nature of disability and its impact on individual

bodies, the medical model applies interpretations of disability universally.

Here, the sociocultually situated nature of disability is obscured and the

argument that living with a disability has as much to do with its social

consequences as with its biological ones is silent.

Dominant Narratives On Families Of Children With Disabilities

Despite monumental changes that have occurred during the past century with

regard to the treatment of individuals with disabilities, including the

deinstitutionalization movement, sweeping changes in legislation, medical

advances, early intervention, and mandated public education for children with

disabilities, perceptions of a poor quality of life and negative outcomes for

individuals with disabilities and their families have remained relatively

unchanged. Beginning in the mid-20th century, a proliferation of research

literature highlighted predominantly negative outcomes for families of children

with disabilities, suggesting that the experience of chronic sorrow,

helplessness, guilt, psychological distress, and a persistent state of

"mourning" are typical among this group (e.g., Fowle, 1968; Olshansky, 1962;

Solnit & Stark, 1961). Families that institutionalized their children with

disabilities were found to be more harmonious and integrated than those in

which children with disabilities were raised at home (Farber, 1962), lending

support to prevailing professional opinions that the institutionalization of

children with disabilities was in the best interest of all concerned. In the

decades that followed, researchers continued to seek to understand response

patterns associated with the presence of a child with a disability in families.

However, much of the literature that emerged from these efforts was situated

in medical model perspectives and interpreted through a clinical lens. As a

result, professionals have continued to operate on assumptions that the lives

of families of children with disabilities are characterized by never-ending

struggles to overcome seemingly insurmountable obstacles (Wickham-Searl,

1992). Beliefs about children with disabilities as presenting unmitigated

hardship for families continue to frame dominant discourses (Ferguson,

Gartner, & Lipsky, 2000) and to motivate research aimed at helping families to

"cope" with their situations.

In cultural narratives about the experience of parenting a child with a disability,

notions of profound loss and burden emerge as central themes, and these are

upheld in institutional discourses and practices (Lalvani, 2008, 2011).

Additionally, the accepted wisdom that grieving is a natural reaction to the

birth of a child with a disability is often explicitly stated in literature targeted to

families of children with disabilities (e.g. Trainer, 1995). Although the

existence of negative psychological states and heightened levels of

depression or stress among this group of families is well documented in

research (e.g. Foley, 2006; Hanson & Hanline, 1990; Hendriks, De Moor,

Oud, & Savelberg, 2000; Keller & Honig, 2004; Rodrigue, Morgan, & Geffken,

1990), the sociocultural conditions that construct, support, and sustain these

emotions remain largely unexamined (Lalvani, 2011). The psychological

distress experienced by these families is understood as originating solely from

their child's disability; the experience of "grief" is decontextualized from the

environments in which families exist. In this extensive body of research that

seeks to explore depression and stress among these families, issues

pertaining to sociocultural attitudes, values and beliefs about disability are not

explored. For instance, Foley (2006) states that the birth of a child with a

disability "signals a potential threat to the spirit as well as to the daily and

future life of the parents" (p. 227). Here, the source of the "threat" is assumed

to be the disability, which is understood as residing in the child. "Threat" is not

located in sociocultural and institutional discourses that position children with

disability as other; important issues pertaining to marginalization, social

exclusion, and stigma are not considered. Similarly, as Ferguson (2002)

points out, in Farber's (1962) study, which found families who institutionalized

their children to be more harmonious, questions concerning the non-existence

of supports or services for the families studied were not asked. Ironically, in

studies that examine stress levels of parents of children with disabilities, the

stress that these parents may encounter when dealing with professionals is

typically left unexamined.

Another theme that has prevailed in dominant cultural narratives about

families of children with disabilities pertains to denial. The notion that families'

responses to a child's disability may be characterized by a refusal or inability

to "accept" their child's condition is prevalent in clinical as well as educational

discourse, and manifests itself in professional practice (Gallagher, Fialka,

Rhodes, & Arceneaus, 2001). The use of the term denial in this context stems

from Kubler-Ross' (1969) work on death and dying, in which she identifies the

stages of grief associated with terminal illness or bereavement, with denial

being one stage along the path to ultimate acceptance. Through professional

training in nursing, psychology, social work or education, it is not uncommon

for professionals to learn about these stages of grief in the context of families

of children with disabilities, or to learn that, similar to individuals coming to

terms with loss pertaining to death, these families can be expected to grieve

the loss of the "perfect child" or to initially experience denial (Gallagher et al.,

2001). As a result, professionals are trained to expect strongly negative

reactions and a period of "mourning" among families of children with

disabilities. In research literature, although there is support for the idea that

these families remain in "denial" for a period of time or are unable to "adjust"

to their child's disability (Butler, 1983; Luterman, 2004; Murray & Cornell,

1981), few researchers have attempted to contextualize parents' reactions, or

to examine parents' interpretations of their own behaviors labeled as denial. In

failing to problematize the labeling of particular responses as denial, this body

of research privileges professional knowledge over parents' insights,

perspectives and concerns, and lends support to notions of pathological

functioning among parents of children with disabilities. On a broader level, it

reifies the notion that the disability itself is "real" and absolute, and that

parents' resistance to professionals' interpretations of the "problem" is in itself

a problem. Traditional inquiries which theorize parents' responses to their

children's disabilities as homogeneous and universal fail to acknowledge the

influence of sociocultural values and beliefs about the nature and implications

of having a child with a disability. Additionally, they do not evaluate the

processes through which parents make sense of disability, account for

variability in parents' interpretations of children's disability labels, or examine

the impact of perceptions of stigma. For instance, as Green (2002) asserts, a

disability diagnosis thrusts a parent into a stigmatized social category; hence,

emotional distress may be the result of courtesy stigma (Goffman, 1963), or

the perception of being stigmatized because of one's association with a

stigmatized individual. Finally, traditional inquiries about families of children

with disabilities do not even consider the possibility of positive outcomes, or

perceptions of a satisfying quality of life among these families.

Disabling Research Methodologies

Although families of children with disabilities have been placed under the

research microscope, the research methodologies used in providing insights

into their experiences have not been subjected to the same scrutiny.

Ferguson (2002) points out that just as familial adjustment to a child with a

disability is embedded in cultural beliefs and values, professionals'

understanding of these families are also embedded in sociocultural contexts.

The interpretation of the birth of a child with a disability is a collaborative

activity; the meaning of the event is negotiated between individuals and

society. From this perspective, there arises a need to deconstruct prevailing

knowledge about families of children with disabilities and to critically examine

research methodologies used in the generating of this knowledge.

Shifting one's gaze from research findings to research methods reveals

problematic conceptual frameworks rooted in the medical model and

methodologies that seek to confirm pre-existing hypotheses. Traditional

research, situated in beliefs that families of children with disabilities

necessarily experience a quality of life that is less than satisfying sought to

identify negative behavioral outcomes or patterns of dysfunction, with the goal

of developing therapeutic interventions for these families. In scholarly works

aimed at helping these families, research questions typically originated from

researchers and were informed by theoretical frameworks that were

understood as absolute and universally relevant. It should be acknowledged

that although these efforts were well-intentioned, the inevitable outcome of

inquiry that originated from assumptions of dysfunction was that almost all

response patterns among these parents, including their attempts to resist

negative assumptions regarding their experiences, were likely to be

pathologized (Ferguson et al., 2000). Thus, families' displeasure over

professionals' supposed lack of support could be seen as displaced anger,

acceptance could be interpreted as an outgrowth of denial, and highly

involved or active parents could be viewed as demonstrating

overcompensating behavior (2000). Additionally, this body of research failed

to capture nuances in familial reactions, as well as parents' perceptions of

positive outcomes or personal transformations resulting from their unique

parenting experiences.

In studies that adhered to a positivist myth of neutrality in scientific research,

the use of attitudinal scales and other instruments thought to "objectively"

measure families' response patterns and perceptions was not uncommon.

Here, the instruments used such as the Parenting Stress Index (PSI), the

Parenting Stress Scale (PSS), and the Global Inventory of Stress (GIS) are

worthy of mention, because, as their names suggest, they are indicative that

assumptions of inordinate levels of stress among families of children with

disabilities were the starting points for inquiry in these studies. Additionally, as

Schwarz (1999) argues, self-report measures of this nature are potentially

problematic, because the wording of the questions and the format are likely to

shape participants' responses. For instance, in a study that investigated the

limitations of self-report questionnaires, when reporting life events and

satisfaction, participants who were asked to report positive events reported

higher levels of happiness and life satisfaction, while participants asked to

report negative events reported lower levels of happiness and life satisfaction;

the nature of the questions made particular emotions more accessible and

salient (Strack, Schwarz, & Gschneidinger, 1985). As Schwarz (1999)

explains:

As researchers, we tend to view our questionnaires as "measurement

devices" that elicit information from respondents. What we frequently overlook

is that our questionnaires are also a source of information that respondents

draw on…[researchers] miss the extent to which the questions we ask

determine the answers we receive. (p. 103)

This raises concerns about the potential for parenting stress inventories to

elicit negative responses, due to questions that focus on stress, burden, and

negative emotions. Furthermore, although these instruments present a range

of questions within the child and parent domains, questions pertaining to

parents' understanding of societal, cultural, or institutional discourses and

practices are not typically included. In many instruments that seek to

determine parents' perceived levels of satisfaction or efficacy, there is little

acknowledgement that these perceptions exist in the context of an

environment that shapes and upholds certain realities and silences others.

Perceptions of parenthood are examined as if they exist in a vacuum or in

isolation from social and cultural contexts.

In traditional research which begins with assumptions of negative outcomes,

questions originate from researchers' perspectives rather than from those of

the families, and as such, in this body of literature, the interpretations of the

family members are largely missing. It should also be acknowledged that

when research is conducted in the context of a therapeutic relationship or

under a clinical lens, it assumes a stance of profound unequalness and

privileges certain interpretations over others. Although, it can certainly be

argued that almost all research is situated in power differentials between the

observer and the observed, in the case where research participants are in a

therapeutic relationship with researchers, or the aim is to generate therapeutic

interventions, strong assumptions about the quality of life and psychological

functioning among those being studied are being made. Furthermore, when

the focus tends to be on the behavior and mental health of individuals,

problems inherent in societal and institutional structures and practices are of

less concern, and critical questions pertaining to societal barriers to optimal

family functioning, institutional and cultural ableism, or problems inherent in

society are left unexplored. Ultimately, in research that locates the

experiences of families of children with disabilities as outside the normative

range, these families become positioned as other, and their members are

denied the right to define their lives in their own terms.

The limitations of traditional positivist methodologies rooted in the medical

model call for a theoretical shift in the overall concept of disability, as well as

the methods of inquiry used to study the experiences of families of children

with disabilities. To address the inherent limitations of medical model-based

studies, we discuss three critical theoretical frameworks that have the

potential to inform, extend, and contextualize existing knowledge about

families of children with disabilities: critical disability theory, sociocultural

theory, and positioning theory.

Critical Theoretical Frameworks: Contextualizing Families of Children with Disabilities

Critical Disability Theory

Traditional theory conceptualizes the researcher as objective and

disinterested from the object of study, and holds that the goal of research is to

"describe the world as it is" (Hosking, 2008). In contrast, rather than observing

and explaining a fixed and objective reality, critical theory focuses on power

and privilege, seeking to emancipate and challenge oppression and

domination (Hosking, 2008; Mertens, 2007). Grounded in the stance that

multiple realities exist, critical theory holds that it is imperative to include the

voices of historically disenfranchised groups in research, and for knowledge to

emerge through social interactions between researchers and participants

(Mertens, 2007).

Based on the stance that individuals with disabilities have been denied full

access to mainstream life and have been subjected to the same forms of

discrimination and segregation as members of other oppressed groups (Hahn,

1997; Saxton, 2000), critical disability theory contends that concepts of

normality and disability are strongly influenced by those in positions of power

and control, such as members of the medical establishment (Kliewer, 1998).

Situated in social model perspectives, critical disability theory conceptualizes

disability as a sociocultural construct as opposed to a biological reality. In

contrast with inquiries based in the medical model, research based in critical

paradigms understand the experience of disability as an interrelationship

between impairment and interpretations of impairment, and focus on the

attitudinal and institutional barriers faced by individuals with disabilities

(Horkheimer, 1972; Hahn, 1997). Through this lens, the lived experience of

disability is inextricably linked with the sociocultural meaning of disability, and

with the language and practices which uphold the privilege of nondisabled

people (Bogdan & Taylor, 1994; Danforth & Navarro, 1998; Finlay, Lyons, &

Taylor, 2005; Hosking, 2008; Taylor, 2000). Focusing its gaze on imbalances

in power and systematic oppression, critical disability theory is "intentionally

political" and transformative in nature (Hosking, 2008, p. 17).

Sociocultural Theory

Rooted in the work of Lev Vygotsky, sociocultural theory stresses the

interpersonal nature of psychological phenomena, positing that human

thought and development emerge through social interaction (Vygotsky, 1978).

At the crux of Vygotskian sociocultural psychology is the idea that individual

mental processes can only be understood by examining the social and cultural

processes from which they derive (Wertsch & Tulviste, 1994). From this

perspective, the experience of disability, and of families of children with

disabilities, are understood as situated in the beliefs, values, and attitudes that

exist in a given culture at a particular time in history. Sociocultural theory

provides a lens for exploring the situated nature and meaning of disability. The

medical model perspective, which conceptualizes disability as necessarily

associated with decreased quality of life, or as biologically determined (Asch,

1989; Saxton, 2000), therefore reflects "a moment in a cultural focus"

(McDermott & Varenne, 1995, p. 324), as opposed to an objective reality.

Alternatively, framed in sociocultural theory, the phenomenon of disability is

understood as socially constructed, and individual parents' adaptation to the

birth of a child with a disability is best understood in the context of the ways in

which this experience is culturally interpreted or the meaning that parents

attach to this life event.

Positioning Theory

Positioning theory offers an explanation of the ways in which psychological

and social phenomena are constructed and sustained through discourse and

activity in which individuals position themselves and others (Harre & Gillet,

1994). Here, the concept of fluid "positioning" replaces the notion of static

"roles" that individuals possess in social relationships (1994). Through social

interaction, claims are made about social relationships, power dynamics are

enacted, and particular interpretations of the world are upheld, with some

individuals benefiting more than others (Harre & Moghaddam, 2003; Harre &

Slocum, 2003). Medical model perspectives, in which families of children with

disabilities are "malignantly positioned" (Parrott, 2003) as unhappy and

maladjusted reflect this imposition of identities and demonstrate the ways in

which power dynamics shape a constructed reality.

Positioning theory uses the lens of master narratives and counter narratives.

Master narratives are understood as "frames according to which courses of

events can be easily plotted, simply because one's audience is taken to 'know'

and accept these courses" (Bamberg, 2004, p. 360). Notions about the lives of

families of children with disabilities as characterized by unmitigated hardship,

burden, and grief can be understood as problematic master narratives.

Simultaneously, individuals can oppose dominant constructions of their

experiences through their critical "counter-narratives" (Solis, 2004). As

individuals construct counter-narratives, they fashion accounts that challenge

power relationships and social expectations, hence opening a space to

problematize particular viewpoints on human experiences.

Narrative Inquiries: Findings from Critical Research

A growing body of research situated in critical theoretical frameworks and

using narratives as a methodological tool suggests that families do not

experience the presence of a child with a disability in a homogeneous or

universally negative manner and that there is a wide range of outcomes for

these families (Ferguson et al., 2000). Indeed, after an initial period of

uncertainty, many families of children with disabilities may be more accurately

characterized by resilience or thriving than by burden and grief, and overall,

their perceptions of their quality of life seem to resemble those of families in

general (Ferguson, 2002; Hastings & Taunt, 2002; Van Riper, 2007). Beyond

issues of adjustment and resilience, research that elicits family narratives

attends to the extent to which interpretations of this experience are situated in

the sociocultural meanings ascribed to the constructs of disability, normalcy,

and parenthood, as well as in institutional discourses and practices that

position children with disabilities and their families as other (Goddard, Lehr, &

Lapadat, 2000; Lalvani, 2011).

Similar to Mishler's (1995) style of interviewing which allows researchers and

participants to co-construct the meaning of the experiences and events that

are reported, Goddard et al. (2000) engaged parents of children with

disabilities in critically constructing the subjective meaning they attached to

their experiences. These parents had agency in identifying "problems" as well

as in interpreting the nature of these. Additionally they were asked to prioritize

the concerns they had raised, thereby increasing our understanding of the

salience of the various issues among them. The findings indicated that for

many parents in this study, perceptions of stereotyping by professionals were

a source of concern. Their narratives also shed light on "stories of difference"

in which parents discussed the subjugated gaze of others and articulated

perceptions that they were made to feel guilty through a hyper-scrutiny of their

parenting styles or of the prenatal choices they had made, with its implicit

message that these parents might somehow have caused their children's

disabilities. This finding compels us to rethink master narratives on "guilt" as a

natural reaction among parents of children with disabilities, suggesting instead

that rigid social structures which implicitly or explicitly portray parents as the

cause of the problem may construct feelings of guilt among some parents.

Furthermore, in this study parents discussed their frustrations with

bureaucracy involved in obtaining services and with professionals'

pathologizing of their children's behaviors.

Narrative inquiries reveal that the experience of parenting a child with a

disability is linked with issues of stigma. Some studies shed light on master

narratives in which families of children with disabilities are positioned as non-

normative, and indicated that parents' emotional distress was linked to their

perceptions of being stigmatized and to their beliefs that their children with

disabilities were less "valued" in society (Birenbaum, 1970; Goddard et al.,

2000; Green, 2003; Lalvani, 2011; Landsman, 1999). Lalvani (2011) explored

this in depth through open-ended questions which allowed mothers to reflect

on their experiences of the birth of their children with Down syndrome. In this

study mothers believed that through their interactions with medical and mental

health professionals they had received negative interpretations of Down

syndrome. Some recalled that doctors had used the language of "tragedy"

and "burden" in conveying their children's diagnoses, and some others

believed they had experienced subtle or overt coercion to consider terminating

their pregnancies after a prenatal diagnosis of Down syndrome. Professionals

were not the only sources of negative messages for mothers in this study;

many related accounts of friends or family members who had reacted to the

news of their children's having Down syndrome with profound sadness or

expressions of sympathy. Additionally, some recalled that it was not

uncommon for people to ask them whether they had undergone prenatal

genetic testing or to express puzzlement over why they had chosen to forgo it,

with the implicit message that having a child with Down syndrome is a largely

undesirable experience and one that these mothers could have prevented.

This is resonant of the argument that interpretations of the birth of a child with

a disability and the very meaning of motherhood may be profoundly shaped

by the technologies of prenatal genetic testing and by an increasing cultural

expectations of birthing a "perfect child" (Parens & Asch, 2003; Rapp, 2000;

Rothman, 1993). Lalvani's (2011) study highlighted numerous ways in which

families of children with disabilities become positioned in hegemonic

discourse as other. For instance, mothers recalled that in addition to being

recipients of sympathy, they were also recipients of admiration; i.e. people

would comment that they were "brave," "courageous," "blessed," or "chosen

by god" to have "a special baby." Many mothers believed that although these

comments were well-intentioned, they also conveyed negative messages

about their children as "not normal" or "not perfect" and therefore not

desirable. These findings shed light on the ways in which parents'

interpretations of their children's disabilities are situated in constructions of

normative families and valued children.

Narrative inquiries draw critical attention to the ways in which parents'

responses to their children's disabilities are situated in cultural interpretations

of disability labels and of the parameters of "normalcy" (Harry, 1992, 1997;

Harry, Allen, & McLaughlin, 1995). Through extensive ethnographic data

collected from a group of Puerto Rican parents, Harry (1992) found that these

parents reacted strongly to labels of "mental retardation" ascribed to their

children because of cultural association of this term with mental illness and its

translation to the term "loco" or "crazy." Additionally among these parents,

parameters of normalcy were broader than would be expected in a Western

psychological context. For instance, one mother in this study expressed

incredulousness that her six and a half year old daughter, who was bilingual

and able to read, could be described by professionals as "mentally retarded."

Additionally in this study, parents' interpretations of their children's disability

labels were embedded in their understandings of personal and family identity;

the cultural associations between mental retardation and mental illness took

on greater significance for parents because of their perceptions that this

reflected on their entire family. This is similar to Lalvani's (2012) study in

which many parents offered their own theories on why they dispute specific

labels for their children. Some explained that they believed labels would lower

expectations or stigmatize their children and others, like parents in Harry's

study, had very different interpretations of "impaired" cognitive functioning.

The information gained through these two studies is critical to understanding

professional-parent partnerships in schools. In the educational arena, Harry

(1992) points out that parents whose perspectives differ from those held by

professionals or those who contest the specific labels ascribed to their

children are often viewed as being resistant or unwilling to accept their

children's conditions. Using medical-model frameworks, these parents'

behaviors are often attributed to their being in "denial." However, their

narratives elucidate that the categorizations of these parents as being "in

denial" are unjustified. As clearly seen in the two studies discussed above,

parents who resisted particular disability labels did not dispute that their

children had some learning difficulties or delays in development; rather, their

resistance pertained largely to the naming of the "problem" (Harry, 1992;

Lalvani, 2012). This is consistent with the assertions of scholars who

deconstruct notions of denial among families of children with disabilities and

who argue that behaviors attributed to "being in denial" may in fact be

interpreted by some parents as maintaining hope, remaining optimistic about

their children's future, or perceiving their children as worthwhile (Gallagher et

al., 2001; Hartshorne, 2002).

The capacity for human agency is exemplified in research that privileges the

voices of families of children with disabilities. Consistent with the idea that

when positioned in master narratives, individuals are agentic in producing

counter-narratives that assign new meaning to interpersonal and psychic

phenomena (Bamberg, 2004), the findings of critical research on families of

children with disabilities capture contested perspectives on their experiences.

In these inquiries, families resisted dominant discourses of otherness, rejected

notions of sorrow and grief, and repositioned themselves as "normal" families

(Fisher & Goodley, 2007; Goddard et al., 2000; Green, 2003, Lalvani, 2011;

Taylor, 2000). As an example, in Fisher and Godley's (2007) study in which

parents were empowered to theorize and offer analyses of their own stories,

parents articulated their resistance to stigma and to the strong cultural

emphasis on normalcy. Furthermore, rejecting the notion that negative

experiences dominate their lives, they chose to focus their narratives on their

own positive transformations and on the ways in which they have been able to

enjoy their children "as they are." Similarly, in a number of other studies,

parents of children with disabilities discuss both the stressors and the positive

aspects of their parenting experiences and highlight perceptions of their own

personal growth (Scallan, Senior, & Reilly, 2010; Scorgie & Sobsey, 2000;

Scorgie, Wilgosh, Sobsey, & McDonald, 2001; Skinner, Bailey, Correa, &

Rodriguez, 1999). Additionally, many parents in these studies understood

their stressors as aspects of parenting, rather than parenting a child with a

disability. In a different way, Taylor's (2000) ethnographic account of the Duke

family, a low-income family in which each member had a disability label,

sheds light on the ways in which this family framed its identity in ways that

resisted notions of damage and stigma. Although each member of this family

was bombarded with labels through health care and welfare agencies as well

as schools, its members were able to maintain positive identity as a family by

thinking of individual members in ways that were removed from their labels.

For instance, family members receiving special education services or

psychiatric treatment were described as "acting young for his age," "being a

pest," "drinks too much," or "immature" rather than being "mentally retarded"

or "mentally ill." Thus they maintained a positive social identity because they

defined the parameters of normalcy quite broadly.

In parents' counter-narratives, concerns related to the discrimination,

rejection, or social isolation of children with disabilities' experiences emerge

as an important theme (Green, 2002, 2003; Lalvani, 2008), which further

illustrates that these families locate disability not solely in their child, but also

in the sociocultural environment. This is evident in Green's (2002) narrative

account of raising her daughter with cerebral palsy, in which she states: "I

envisioned a future of personal rejection, torturous teasing, and social

isolation for my daughter. She would have no friends, no love in her life, no

family in the future" (p. 31). However, though she identifies the sadness or

"despair" which has characterized her life at times, she also states:

…the experience of mothering Amanda has changed dramatically,

irrevocably, and in very positive ways who I am and the ways in which I view

the world… It has also broadened my image of what it means to live a good

and worthwhile life… (Green, 2002, p. 30)

Unlike the findings of positivist research, Green's narrative provides a rich and

nuanced understanding of her mothering experiences and informs us that

although negative emotions may be aspects of parenting a child with a

disability, these are situated in the context of a society that isolates,

marginalizes, or does not fully accept individuals with disabilities.

Furthermore, it informs us that parenting a child with a disability is a complex,

multi-layered experience in which, in addition to difficulties, parents also

experience great joy, derive new meaning, and often find themselves

transformed. Overall, the findings from narrative inquiries complicate core

assumptions about disability as self-contained impairment and reveal

transformations in parents' own interpretations of the familial experience of

having a child with a disability. Such critical work can be instrumental in

contributing to a broader dialogue on the fluid and contextualized meanings of

disability and cultural definitions of normative family life.

Conclusion

Narrative inquiries rooted in the central tenets of critical disability theory,

sociocultural theory, and positioning theory facilitate an epistemological shift in

the manner in which families of children with disabilities are studied and

understood. These critical inquiries situate families in context and allow for

opportunities to better understand how responses to disabilities emerge within

complex social dynamics at particular cultural and historical "moments."

Families of children with disabilities engage in meaning making as they

negotiate dominant medical discourses on disability; socioculturally-based

research opens a space for families to complicate and contest this

construction of their experiences. These families counter-narrate their

experiences and challenge and complicate medical assumptions regarding

the meaning of having a child with a disability. Critical narrative inquiries

contribute to the emerging discourse on the sociocultural meaning of

disability. Through the lens of sociocultural approaches, disability is not a self-

contained or universally defined experience; instead, it is one that is relational

and constructed. Ultimately, sociocultural inquiries allow researchers to

critically evaluate not only the meaning of disability, but also the parameters of

normalcy that permeate our construction of childhood, and more specifically,

of the desired child.

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