A place in the family: an historical interpretation of research on parental reactions to having a child with a disability

A place in the family: an historical interpretation of research on parental reactions to having a child with a disability

Philip M. Ferguson

A review of research was conducted on family reactions to having a child with a disability. From this review, a conceptual framework was developed to locate the major research orientations that developed over the last century. Two new strands have emerged in more recent research, and the review explores how these approaches promise more useful interpretive frames for efforts to improve linkages between families and schools.

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It is perhaps commonplace now to argue that a family’s reactions to having a child with a disability are inescapably embedded within a sociohistorical context. As with all human endeavor, a family’s interpretation of the meaning of disability cannot help but reflect to some degree the larger context of social attitudes and historical realities within which that interpretation emerges. What is implicit within this argument, but perhaps less commonly acknowledged, is that our professional explorations of those family reactions must be equally embedded in the hidden assumptions and cultural expectations of a specific era. As family researchers, we try to interpret the interpretations of families, and it is this shared activity of “meaning-making” that ties us to our time and place. With that in mind, what follows here is not really a summary of a steadily expanding knowledge base about parents and their children with disabilities. I would rather characterize it as a snapshot of what interpretations seem to fit best right now and a review of how these current interpretations have evolved over time.

This review has three major sections. First, I present a conceptual matrix that helps organize and locate some of the major interpretive approaches to families and disability from the last 100 years or so. Second, I explore two key strands of more recent research that have made our understanding of family reactions to disability more dynamic and contextual: family life span approaches and the large body of research often referred to as the “stress and coping” literature. Finally, I present two specific conceptual models for understanding family reactions to disability that seem to be the most useful for framing strategies for improved linkages between families and schools.

History of Professional Interpretations of Families

More than a decade ago, my colleague Adrienne Asch and I began a review of published narratives written by parents and persons with disabilities with what struck us as some simple truths. We wrote, “The most important thing that happens when a child with disabilities is born is that a child is born. The most important thing that happens when a couple becomes parents of a child with disabilities is that a couple becomes parents” (Ferguson & Asch, 1989, p. 108). However, when we look at the history of professional responses to the birth of such a child, we find patterns of research and practice that have, until recently, assumed that the disability itself inevitably overwhelmed all other considerations. The direction of the logic shifted, but the supposedly tragic connotations of such births were consistently presented as inherent and immutable.

The 19th Century

From roughly 1820 to 1910 or 1920, when the medical and educational professions were becoming increasingly specialized, the moral blame for most childhood disability was assigned to the parents, especially those with the bad judgment to be both poor and female. What has been called an “entrepreneurial model” of family life increasingly emphasized “self-discipline and firm, internalized moral codes” (Farber, 1986, p. 7). Home life was to be a “haven in a heartless world” (Lasch, 1977) of capitalist competition. As such, any distractions from the moral and social code were seen as inevitable burdens on the economic success of the family. Poverty became the outcome of indolence and deviation from the moral code, and as such, something that could be passed on to children in an endless cycle of family degeneracy (Demos, 1979; Katz, 1983).

Indeed, the common link between the emergence of the kindergarten and the congregate asylum was the professional argument that both were needed to remove vulnerable children from “the vicious habits of low-bred idleness,” to use the words of Henry Barnard, one of the earliest advocates of early and universal education (Barnard, 1865, p. 294). Samuel Gridley Howe, a contemporary of Barnard’s and one of the early founders of specialized asylums for people with mental retardation, offered an even more explicit indictment of parents of so-called idiots, as he made a plea for money to the Massachusetts legislature. It was a characteristic combination of morality and biology that led Howe to the door of the poor household:

The moral to be drawn from the prevalent existence of idiocy in society is

that a very large class of persons ignore the conditions upon which alone

health and reason are given to men, and consequently they sin in various

ways; they disregard the conditions which should be observed in

intermarriage; they overlook the hereditary transmission of certain morbid

tendencies; they pervert the natural appetites of the body into lusts of

divers kinds,–the natural emotions of the mind into fearful passions–and

thus bring down the awful consequences of their own ignorance and sin upon

the heads of their unoffending children. (Howe, 1846/1976, p. 34)

Reform schools, asylums, and residential schools for increasingly specific disabilities all began to appear in the 19th century as ways to get children who were disabled or “vulnerable” away from their parents. With the spreading optimism of the Enlightenment, the emerging professionals and specialized experts of the 1800s argued that the only way to break the connection between poor parents and children with disabilities was to allow professionals to assume the parental role within the walls of their facilities (Ferguson, 1994; Katz, 1983; Rothman, 1971). This carried over into the rapid spread of special education classes in public school systems after the turn of the century (Tropea, 1993).

A Shift in Blame: 1920 to 1980

For most of the last 70 to 80 years, professional researchers have largely reversed their underlying assumptions. No longer was the emphasis on how poor and probably disabled parents breed poor and inevitably disabled children. Professionals shifted their attention to how children with disabilities inevitably damage the families to which they are born. Whether they preferred to use primarily attitudinal (guilt, denial, displaced anger, grief) categories or behavioral ones (role disruption, marital cohesiveness, social withdrawal), most researchers assumed a connection that was both intrinsic and harmful (Darling & Darling, 1982; Ferguson & Ferguson, 1987; Lipsky, 1985). The challenge for research was to catalogue and sequence the evidence of parental damage and to argue for the efficacy of this or that therapeutic intervention. The medical model that dominated approaches to disability was extended to families.

Conceptual Matrix of Professional Interpretations of Families

Since the 1960s, there has been a veritable flood tide of literature pertaining to parental adjustment to a child with a disability. To make sense of it all, I have created a conceptual matrix to help group the major approaches to interpreting families (see Figure 1). To create the matrix, one can view research on family reactions as efforts to answer one (or both) of two basic questions:

1. What is the nature of parental reaction to having a child with a disability?

2. What is the source of this reaction?

Until recently, most researchers reflected their academic training and disciplinary orientation by tending to answer the first question in either attitudinal or behavioral categories. Certainly with the advent of social psychology and ecological approaches, a firm separation of emphasis on emotional or behavioral terminology has become much less common, and one finds research that cuts across the realms of both internalized feelings and externally observable actions. However, it is still useful as an idealized typology to distinguish these orientations toward parents.

For the second question, another binary distinction (crude but fundamental) can be found. Regardless of whether family researchers have interpreted the underlying nature or essence of parental reactions in attitudinal or behavioral categories, they have tended to describe the source of those reactions either as inherent to the impact of disability on the family or as contextually determined by a variety of influences internal and external to the family.

Combining these characterizations of professionals’ answers to the two fundamental questions about parental reactions yields a two-by-two matrix that conceptually locates much of the research on families and disability produced before the last decade or so (see Figure 1).

Psychodynamic Approach: The Neurotic Parent

Some researchers used primarily attitudinal categories to characterize the neurotic paths families followed. Apathetic or involved, angry or accepting: there was a professional explanation of the pathology behind any conceivable parental response (Lipsky, 1985). If families expressed displeasure with doctors or other professionals over a supposed lack of supports, this was presented as merely the displaced anger that was originally directed at the child with the disability (Pinkerton, 1972; Zuk, 1962). Of course, one could suggest that by interpreting displays of parental hostility as based on an intrinsically neurotic reaction to the birth or diagnosis of a child with a disability, professionals may avoid examining the inadequacies of their own performance. Justifiable anger toward an inadequate system of formal services is implicitly removed as an available parental response.

On the other hand, if the parent seemed too passive in the face of inadequate services, this was seen as an outgrowth of underlying guilt or denial (McKeith, 1973). As a category, denial arises most often in research on cognitive or emotional categories of disability. The argument is that the often vague nature of diagnosing and labeling such disabilities is lost on parents who simply refuse to acknowledge the reality that something is wrong with their child (Stanhope & Bell, 1981; Wetter, 1972). More recently, both research and parent narratives have suggested that what was formerly interpreted as denial is more often a rejection of certain terminology or labels.

Guilt is probably the most commonly invoked category of neurotic response within the psychodynamic interpretive box. Indeed, guilt is seemingly unavoidable, because it can supposedly occur as either a cause or an effect of other emotions. Even parent involvement itself has been interpreted as based in an underlying guilt reaction by parents who believe that they are somehow responsible for their child’s disability. Researchers attributed active parent involvement and dedication to the welfare of their child as prima facie evidence of a deep-seated need to compensate for the same underlying guilt complex (Solnit & Stark, 1961). As Lipsky wrote some 15 years ago,

Not only do the perspectives discussed [of researchers and professionals]

have serious limitations, not only are they severely overgeneralized and

overapplied, but they increase the likelihood that no matter which role a

family plays, it will be deemed unsatisfactory by one or more professional.

In other words, both sides of the coin show pathological behavior. (Lipsky,

1985, p. 615)

Functionalist Approach: The Dysfunctional Parent

In the 1960s and 1970s, research on families reflected the larger shift in the social sciences to a preference for behavioral approaches and categories over the previously fashionable psychoanalytic tradition. However, despite this conceptual reorientation, the assumptions of inherency of family responses to a child with a disability remained largely unchallenged. In one of the largest and best-known studies from this era, Farber (1962) and his colleagues found that the families who institutionalized their children identified as mentally retarded were much more relaxed, harmonious, and integrated. However, subsequent studies showed the danger of professional assumptions about what was normative and what was not. The question not asked by Farber was whether the erratic or nonexistent support services for families in the 1950s and 1960s caused more marital disharmony and social isolation than did any inherently disruptive influence of the child with disabilities living at home. Indeed, a less well-known but revealing study from the same era discovered that in families of children with disabilities living at home who were in day programs or schools, marital integration was much higher than in families without such services (Fowle, 1968). What Farber interpreted as normative and unavoidable was, in fact, found to be situational and contingent.

Nonetheless, in both psychodynamic and functionalist research, the causal connections between “disabled child” and “damaged family” continued to dominate. The extremes to which this passion for pathology was taken can be seen in one research piece that appeared in 1981, just before the tide of family research began to shift once again. An article titled “Parentalplegia” (Murray & Cornell, 1981) provides perhaps the most transparent version of the dominant logic:

Children having conditions of mental retardation or other handicaps

involving physical deficiencies are likely to be causes of a secondary

handicapping condition involving the parents…. The authors have chosen

the term parentalplegia to describe a secondary psycho-physiological

(stress induced) condition that evolves among parents of handicapped

children. Parentalplegia seems to be caused by an inability on the part of

parents to adjust to the handicap of their children. (p. 201)

Psychosocial Approach: The Suffering Parent

As a steady counterpoint to the psychodynamic drumbeat of Bettelheim (1967) and others, the psychosocial approach emphasized the interplay of parental emotions with the environmental circumstances in which the family found itself. Guilt, anger, and denial were replaced by stress, loneliness, and chronic sorrow. The focus expanded from the almost exclusive attention to the mother-child dyad within the psychodynamic orientation to a much more contextual approach that presaged the more complex analyses of family systems theory and constructivism.

One of the first examples of this approach is Olshansky’s (1961) classic description of “chronic sorrow.” Instead of neurotic grief and guilt, chronic sorrow was offered as a normal, understandable reaction to an unexpected and in many ways unwanted situation. Indeed, it would be the absence of such regret and sorrow that should provoke professional concern, not its presence. The abnormal aspect of such grief is, argued Olshansky, more often in the psychologist’s assumptions than in the parent’s emotions. What is important is the response of the parent’s environment to this initial reaction.

Perhaps an even better example of this psychosocial orientation to parental reactions is a pattern described by Wolfensberger (1983) as novelty shock. Novelty shock differs from the psychodynamic accounts of grief at the “loss of the expected perfect child.” The emphasis of the novelty shock interpretation is that an unanticipated event occurs, which produces initial reactions of bewilderment, confusion, and dismay. Instead of the disability itself, the crucial factor is the social communication of information and interpretive stances taken by professionals and other family members.

Interactionist Approach: The Powerless Parent

Perhaps the least common approach of the four options discussed here is the interactionist approach. Indeed, this interpretational orientation arose more from parent narratives themselves than from professional inquiry (Featherstone, 1980; Ferguson & Heifetz, 1983; Massie & Massie, 1975). The behavioral emphasis of functionalism on marital role disruption, social withdrawal, and so forth transforms into a focus on more socially imposed outcomes of impoverishment, disempowerment, stigma, and fatigue.

The Emergence of the Adaptational Context

These implicit and explicit assumptions that have guided family research in the past reflect the social and historical context within which that research occurred. This is not surprising unless one assumes that the influence of cultural values and social policy somehow stops at the door to the diagnostic lab. Over the last 10 years or so, family researchers have come to assume instead that such contextual influence is where the inevitability resides, not in some unbreakable connection between the child with disabilities and parental pathology.

Of course, these social and historical forces influence the questions that family researchers ask today. There has been, however, a dramatic evolution of our attitudes and supports for people with disabilities and their families, which is reflected in legislation such as the Individuals with Disabilities Education Act and the Americans with Disabilities Act, and through public policy and practice that supports people with disabilities in family and community settings. All of these developments are part of the context that both generates and reflects the questions that today’s researchers are trying to answer about families and disability. One of the most prominent of these researchers, Marty Krauss at Brandeis, has summarized the implications well:

For decades, researchers examining families of children with disabilities

explicitly assumed a high degree of pathology in family functioning….

These studies may have served a useful purpose in focusing attention on the

enormous difficulties experienced by families who received little or no

public services to support their caregiving efforts…. However,

substantial strides have been made in publicly supported early intervention

systems, educational inclusion policies, and family support programs over

the past decade…. Thus, studies conducted prior to the early 1980s are

based on a different cohort of families than those who have participated in

research conducted within the context of current service initiatives.

(Krauss, 1993, p. 393)

Over the last 2 decades, perhaps the most influential developments in research on the effect of a child with a disability on parents and other family members have come from two specific conceptual traditions: models of stress and coping (or adaptation) and models of family life course development. No more than a summary sketch of these research traditions is possible here. However, even a cursory outline reveals the important contribution that a sociohistorical approach has made to interpreting the meaning of disability in people’s lives.

The Adaptive Family

Within the broad field of social psychology, research has centered on developing a theoretical representation of how families adapt to the potentially stressful situation of having a child with a disability. With this focus, researchers have steadily refined and elaborated the classic ABCX model originally developed by Reuben Hill (1958). Essentially, this model describes “family crisis” (X) as an interactive outcome of three factors: A, an initial stressor event, combined with B, a family’s resources for dealing with crises, and C, the family’s definition of the stressor (Behr, Murphy, & Summers, 1992; Patterson, 1993). Recent work with families of children with disabilities has proposed refinements to this original model in two key ways.

Over the last few years, the use of this and other models of family adaptation and resilience has allowed researchers to increasingly recognize and interpret the many successful coping strategies and positive adaptations that many families report (Antonovsky, 1993; Summers, Behr, & Turnbull, 1989). The question is no longer one of listing the “unfortunate consequences” of an “unquestioned tragedy.” Nor is it a simple counterbalancing quest for purely positive outcomes. Instead, most of the more sophisticated research on family stress today concerns the factors that contribute to the successful adaptation of some families. There is a level of agreement approaching consensus that the adaptational profiles of families who have children with disabilities basically resemble in range and numbers the profiles of families with children without disabilities (Baxter, Cummins, & Polak, 1995; Krauss & Seltzer, 1993; Lie et al., 1994). Again, Marty Krauss (1993) provided a summative judgment on the effect of this growing research base on the field:

There is increasing recognition that many families cope effectively and

positively with the additional demands experienced in parenting a child

with a disability…. The most recent literature suggests that families of

children with handicaps exhibit variability comparable to the general

population with respect to important outcomes…. Research is now focused

on understanding the factors associated with the amelioration of the

“crisis” and on the similarities and differences between mothers and

fathers in their perceptions of and responses to the experience of

parenting a child with special needs. (pp. 393-394)

Researchers have made the model dynamic by recognizing that the ABCX cycle of responding to crisis is often cyclical and cumulative within a specific family. How a family responds to one stressor will influence how it responds to subsequent stressors (McCubbin & Patterson, 1983). People also vary tremendously in how they respond to the same events in their lives. Stressors for one person may truly be experienced as benefits by another. In order to account for these different ways that people respond to events, Folkman and Lazarus (1984) developed a theoretical model of a two-stage appraisal process in which events and the resources for dealing with those events are inseparable. In the first stage, events are appraised as being of potential concern. In the second stage, people appraise the events again in light of resources available to them. Perceptions of a potential crisis and perceptions of family resources for dealing with it are interwoven. Researchers look not only at how families respond in terms of their behavior but also at the different cognitive interpretations and strategies that families use to shape their response.

For example, several interesting studies have compared families of children with Down syndrome with families of children with other disabilities, or with no disabilities. In one such study, Cahill and Glidden (1996) found that when they matched samples of families of children with Down syndrome with families of children with other disabilities, there were no significant differences in family and parental functioning. The authors suggested that this counters the persistent stereotype that children with Down syndrome are easier to raise than children with other disabilities. However, a side finding was that not only was there no “adjustment advantage” to rearing children with Down syndrome but

the average level of functioning for all families was quite good. On most

variables, scores were at or near norms based on families in general….

Most families who are rearing children with disabilities are demonstrating

effective coping with this task. (p. 158)

The Evolving Family

This shift has also allowed recognition of the importance of where a family is within its own life course. Phases of family development inevitably shape how family members perceive a specific source of potential stress (Fewell & Vadasy, 1986; Turnbull, Summers, & Brotherson, 1986). This development has supported the “discovery” of older parents by researchers. Until very recently, almost all research on family response to a disabled child with disabilities focused on families with young children. Studies that followed families across the life span or that specifically sought older parents of adults with disabilities have opened up fascinating avenues for learning more about why some families are more resilient than others and how extended coping with chronic illness or disability affects families over time.

The Supported Family

Another important elaboration of the ABCX model has been a distinction between internal and external resources that may be available to families. For example, the availability of effective family support programs might make a difference in how well a family copes with the financial stress sometimes associated with having a child with a disability (Singer & Irvin, 1989). However, even the division of external and internal resources is embedded within a sociohistorical context of social policy and cultural assumptions (see Figure 1). The problem for the more objectivist family researchers has been to move from acknowledgment of this larger context to operationalizing its components for comparative measurement. Some of the most exciting work here has been the study of so-called ecocultural niches by Thomas Weisner and Ronald Gallimore and their colleagues, who used “activity settings” as the unit of analysis for understanding the social construction process that families use to shape the meaning of disability in their lives (Gallimore, Coots, Weisner, Gamier, & Guthrie, 1996; Gallimore, Weisner, Bernheimer, Guthrie, & Nihira, 1993; Weisner, 1997).

Areas of Continuing Need for Research

Two areas of continuing need emerge from this review of social psychology and life span research on families. First, there is a greater need than ever to understand how the accounts that families themselves provide match these theoretical models. Most of the research in this area understandably uses research constructs and measures specifically designed to fit the categories of the model being tested. However, there is a parallel need to collect less structured descriptions of family life to explore how well the model fits when families generate the terms and categories in their own narratives. Despite the growth of qualitative techniques in family research, such as semistructured interviewing, over the last decade, the need continues for more extended narrative accounts from parents and other family members that capture the full range of details of daily life and family routine.

Those of us who rely on more interpretivist methods have been content to collect and analyze the stories that pack all of that history and culture into a shared family narrative (Engel, 1993). The elaboration of the stress and adaptation models and the family life span orientation have allowed researchers to rediscover the rich body of information available in the stories that families have always been willing to tell about their experiences. These stories are useful as more than simply accounts of the past. As anthropologists have always known, the stories and myths that we adopt to explain our origins–whether as part of a family or part of a culture–always tell as much about our current situation as our past. What we choose to remember, and the stories within which we frame those memories, always help to “clarify the circumstances at the time the story is retold” (Engel, 1993, p. 797). In telling us about their lives “then,” families are equally telling us about their lives “now.”

Despite the work of Gallimore, Harry, and others, a second continuing gap in our knowledge of families and disability involves a neglect of cultural and generational variables. Until recently, most research on families of children with disabilities tended to gloss over the situational complexities and cultural variables that surround all of us, in the interest of making global claims about the inevitable–and always negative–responses of parents to having a child with a disability. One of the results of this emphasis has been a neglect until very recently of non-European cultural backgrounds in this research. Freed from the nuisance of contextual variation, research for decades could get by with little more than rhetorical acknowledgments that maybe, somewhere down the research road, conclusions about disability and families should be based on more than White middle class mothers.

Regardless of where one comes down on the continuum of cultural relativism, the immense human variety of beliefs and practices seems to have an undeniably powerful influence on how a specific family interprets a specific disability. Both family and disability are cultural constructs, and the problems we have in agreeing on universal definitions of either term stem from this cultural embeddedness. These concepts are not simply social conventions like the Big Ten athletic conference or being polite, but they cannot be considered for long in the abstract. They require, rather, what Geertz (1973) referred to as “thick description,” which will put substance to the terms. Increasingly, the field of disability studies is trying to assume this challenge to explore the cultures of disability and family (Goode, 1994; Ingstad & Whyte, 1995; Mallory, Nichols, Charlton, & Marfo, 1993). Important studies of the double minority status of being non-White and disabled in the United States are now appearing (Baxter, Poonia, Ward, & Nadirshaw, 1990; Kalyanpur & Rao, 1991; Madiros, 1989). The need is still immense, however, for multicultural studies that explore the diversity of experiences of disability.

Summary of Findings

Let me summarize the key points that emerge from any fair and thorough reading of recent research on family adaptation to raising a child with a developmental disability.

* There is an increasingly dominant body of research that finds aggregate patterns of overall adjustment and well-being to be similar across groups of families with and without children with disabilities. This aggregate pattern, however, does show some developmental differences over the family life course (from birth of first child to death of last parent).

* There is increasing recognition and growing research that a significant number of parents actually report numerous benefits and positive outcomes for their families associated with raising a child with disabilities. These include coping skills (adaptability), family harmony (cohesiveness), spiritual growth or shared values, shared parenting roles, and communication.

* This is not to say that having a child with a disability is not a stressful event. The research continues to refine our understanding of why some families are more resilient than others in adapting to this stress. Some research suggests that such factors as level of disability (e.g., cognitive disability with pervasive support needs) or family structure (single parents, family size) may not be as critical as other factors (presence or absence of self-injurious or challenging behavior, family income). Some differential patterns exist along ethnic and cultural lines.

FIGURE 1. Nature and source of parental reactions.

INHERENT CONTEXTUAL

DISRUPTIONS DISRUPTIONS

ATTITUDINAL Psychodynamic Psychosocial

Approaches Approaches

BEHAVIORAL Functionalist Interactionist

Approaches Approaches

AUTHOR’S NOTE

Portions of the section “Conceptual Matrix of Professional Interpretations of Families” were revised and adapted from Ferguson and Ferguson (1987).

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Philip M. Ferguson, University of Oregon

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