Culture in Special Education: Building Reciprocal Family-Provider Relationships

Culture in Special Education:
Building Reciprocal Family-Provider Relationships

Maya Kalyanpur and Beth Harry

 

(Excerpt from Chapter 2, “The Legal and Epistemological Underpinnings of the Construction of Disability,” from Culture in Special Education, by Maya Kalyanpur and Beth Harry (copyright Paul H. Brookes Publishing Co., 1999)

 

Maya's Story

Cultural Underpinnings of Special Education Law

IDEA as a Cultural Statement

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Maya's Story

I came to the United States for the first time as a graduate student, after having taught in special schools in India for several years, and began working with adults with developmental disabilities who lived in a group home. One of the first tasks that I was assigned was to teach them "community living skills": My supervisor suggested eating in a restaurant. I set off confidently with my "client," Gary, a young man with moderate mental retardation, to the nearest restaurant; after all, I thought I knew what to expect. To me, a restaurant is a place where you go to eat; you wait to be seated; when you are seated, your waiter fetches the menu, gives you time to choose, takes your order, and soon brings your order; you eat your meal, pay the bill, leave a tip for the waiter, and leave.

Gary and I entered a McDonald's. It was the first time in my life that I had entered a fast-food restaurant, and I realized, very quickly, that the rules here were very different from what I knew. As I hesitated, Gary sized up the situation. Taking my hand, he led me to the end of a line of people who, I realized with a start, were not waiters but customers waiting to place their orders. Gary pointed to the bewildering array of choices displayed on a sign above my head -- bewildering because the menu did not read from top to bottom in traditional fashion but in blocks across the wall. I looked at the first block and began to make a choice when, as I came to the end of the list, I discovered that this block was for breakfast only and not available after 10 a.m. Then I looked at the second block and started to choose from the list when Gary directed my attention to the third block; I learned later that the second block was for specialty items. It seemed that despite the array of choices, our impecunious circumstances restricted us to a single option: the value meals in the third block.

By the time I had recognized the subtle differences between a "number one value meal" (cheeseburger, fries, and a medium drink) and a "number two value meal" (double cheeseburger, fries, and a medium drink), we had reached the front of the line. But before I could say anything, the lady behind the counter said, "For-here-to-go?" I stared absolutely blankly at her. What on earth did that mean? Was she speaking in English? When I did not respond immediately, Gary stepped up and replied, "Here." With obvious relief, the woman turned to him and directed all subsequent questions, including my order, to him. We carried our trays to a small table to which Gary led us; later, he showed me how to "bus" our table.

In that environment, I undoubtedly was the more disabled of the two, not only in my own perception but also in others'. Over the years, I have related this story to my students on numerous occasions as a springboard for a discussion on the social construction of disability. It serves to remind me of the fragility of our own perceptions of competence and helps them to become aware of the arbitrariness with which we determine, in each culture, who is "normal."

The arguments in this chapter are based on the premise that the parameters for normalcy or deviance are socially constructed. The view that disability is a matter of perspective is not new. Several social theorists have argued that disability is constructed relative to particular social and cultural practices and independent of the loss of a bodily function, cognitive or physical (Barton, 1996; Bérubé, 1996; Bogdan & Knoll, 1995; Fulcher, 1989, 1996; Goode, 1992; McDermott & Varenne, 1995). Indeed, the question of what is a disabling condition and who is disabled (the meaning of disability), and who makes these decisions (the models that establish these meanings) is specific to a culture. Although in some cultures the meaning of disability is established by legal or professional institutions, in other cultures these meanings may emerge more from "folk beliefs" (Groce & Zola, 1993) and from community understanding of people's roles (Edwards, 1997; Helander, 1995). In turn, societal values influence both models and meanings.

Research on attitudes toward people with disabilities in different cultures (e.g., Danseco, 1997b) points to differences in the meaning of disability. Findings indicate that the same condition may or may not be perceived as a disability in different societies and that certain conditions may carry more of a stigma than others. For instance, some Yoruba families perceive physical conditions such as goiter, hunchback, and albinism to be punishments for offenses against God and therefore a disgrace; conversely, hydrocephalus is neither a stigma nor a disability (Walker, 1986). Some Asian families consider having a child with a developmental disability a sign of good fortune in the future, others view it as a punishment of past sins, and many consider it an act of God that cannot be changed (Miles, 1997).

Findings also reveal that the value attached to a certain disabling condition differs depending on societal expectations and the established parameters for normalcy. For example, among the Manus of New Guinea, because being able to handle a canoe is a necessary survival skill, the loss of an arm is much more of a disability and much more stigmatizing than the inability to read (Edgerton, 1970). Conversely, technological availability of prosthetic devices and societal expectations for literacy in the United States combine to create exactly opposite perceptions of the same disabilities.

An analysis of education and rehabilitation policies also indicates differing interpretations of disability (Barton, 1996; Fulcher, 1989; Mehan, 1988; Skrtic, 1995b). For instance, in many capitalist economies, nonproductive people -- that is, those who do not contribute to the growth of the economy -- are perceived as dependent or disabled (Hahn, 1986; Margonis, 1992). As Fulcher pointed out,

Disability is a disputed category. This is clear when we look at welfare state and education practices. Its relevance is disputed: Is this, or isn't it, a case of disability? And if so, how much, how disabled? Is this person feigning incapacity? Is this doctor working to lower the company's liability? Or is he/she, the doctor, making an unbiased judgment? The way social institutions should respond (segregate or integrate?) and how (with what resources?): These are all contentious issues. Disability is thus struggled over in social practices in a range of arenas; it is a procedural and political category. (1989, p. 24; italics in original)

Similarly, education policy requires that students be evaluated to determine their eligibility for special education services, a process that results in labeling some students by disability category. As a result, 10.4% of all children between the ages of 6 and 17 are identified as having special education needs and receive some services (McDonnell, McLaughlin, & Morison, 1997). When we examine who acquires or who is more likely to acquire the identity of being disabled, however, we discover an overrepresentation of 1) poor (McDonnell et al., 1997), 2) culturally and linguistically diverse (Heller, Holtzman, & Messick, 1982; McDonnell et al., 1997; Mercer, 1973), and 3) male (Athans, 1998; Turnbull & Turnbull, 1998) students in special education. It would appear that the assessment process results in the labeling of many students as having a disability, even though they may not have an impairment.

The two sections of this chapter examine the implications of the cultural specificity of the models and meanings of disability for families whose points of view may differ. The first section consists of two parts. First, it identifies some of the values that underlie special education law and policy in the United States, specifically the Individuals with Disabilities Education Act (IDEA) of 1990 (PL 101-476) and its amendments of 1997 (PL 105-17). Next, it discusses the implications of this value embeddedness for families from contrasting traditions. The second section also has two parts. First, it identifies certain assumptions about the meaning of disability contained within the dominant epistemological paradigm, the medical model, within the context of the overrepresentation in special education of students from culturally and linguistically diverse backgrounds. Next, it shows how these meanings may contrast with the beliefs of minority families.

 

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CULTURAL UNDERPINNINGS OF SPECIAL EDUCATION LAW

Education and social policies reflect the core values of prevailing cultural contexts (Marshall, Mitchell, & Wirt, 1989; Welles-Nyström, 1996). Indeed, as Marshall et al. noted, "We can learn a great deal about a culture by understanding [its] values . . . and by understanding the ways in which values are built into policy" (1989, p. 6). For instance, in a study of Swedish family policy, Welles-Nyström (1996) identified the ideology of equality as the underpinning for Swedish child health care policies. That is, the rights of women to participate in the labor force and of men to participate in the home and in child care are ensured through legislation for both maternity and paternity leave, and children's rights are ensured through numerous legislative measures, including the socialized health care sector for all children, regardless of race or socioeconomic status.

That social policy is a response to the cultural context becomes clear when we examine policy changes in the United States over time. For instance, during the latter half of the 19th century, the ideal of individualism as a striving for self-reliance and independence was tied to the national civic goal of efficient and rapid economic development (Marshall et al., 1989). Thus, social policy reflected efficiency measures that sought to exclude those who did not conform to this mold. Concerns about "new" immigrants from southwestern Europe who might not subscribe to American values (Valdés, 1996) and attempts to classify races led to federal immigration laws that severely limited immigration (Tyack, 1993). Dependent individuals -- for instance, people with developmental disabilities -- also were perceived to be undesirable, and their reproductive capability was restricted through compulsory sterilization acts and large-scale warehousing in institutions (Rauscher & McClintock, 1997).

It is only in the latter half of the 20th century that the ideal of equity has emerged as the preeminent value and has broadened to encompass disenfranchised groups, including women, people of color, people with disabilities, and children -- the primary beneficiaries of social and education policy -- and allowed them the freedom to make their own life choices (Friedman, 1996; Marshall et al., 1989). Simultaneously, the concept of individualism began to embrace freedom of choice, individual rights, and autonomy as its defining factors (Friedman, 1990). As a result, attitudes toward people with disabilities changed dramatically, influencing through public policy and legal reform an equally profound change in people's quality of life from rejection and segregation to acceptance and inclusion (Ferguson, 1994; Jablow, 1992; Turnbull & Turnbull, 1998). The emergence of new ideologies in human services, such as the principle of normalization, which involves making the lives of people with disabilities as normal as is practicable (Wolfensberger, 1972), and the principle of the least restrictive environment (LRE), which provides an array of programmatic options for students with disabilities to maximize their potential (Turnbull & Turnbull, 1998), further reinforced this emphasis on equity, choice, and individual rights.

We contend that this interaction of attitude and political beliefs with legal doctrine that resulted in compatible ideologies in human services and special education programs occurs within a cultural context. For instance, the movement toward deinstitutionalization on the basis of the principle of normalization emerged from the societal emphasis on rights and individualism (Biklen, 1974; Wolfensberger, 1972). Similarly, the self-advocacy and parents' movements used the platform of rights and equality to further their causes; both ideals eventually became the cornerstone principles for special education legislation, such as IDEA (Mallory, 1995; Miller & Keys, 1996; Turnbull & Turnbull, 1997). Indeed, IDEA is a product of 20th-century American culture. As Marshall et al. pointed out, "Laws are ultimately statements about particular values that dominate within a political system. Such values reflect cultures" (1989, p. 138).

 

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IDEA as a Cultural Statement

IDEA encompasses six principles of law:

  1. Zero reject, or the right of every child to education
  2. Nondiscriminatory assessment, or the right to a fair evaluation to determine appropriate educational placement
  3. Individualized and appropriate education to ensure that the education is meaningful
  4. Least restrictive environment to ensure that children with disabilities can associate with typical peers to the maximum extent appropriate to their needs
  5. Due process to ensure the child's right to challenge any aspect of education
  6. Parent participation, which allows parents to participate in the education decision-making process (for a fuller description, see Turnbull & Turnbull, 1998)

An analysis of these six principles reveals several core underlying values. Although we acknowledge that other values may be represented in these principles, for the purpose of our analysis, we focus on three core values: individualism, equity, and choice. We also recognize that each principle may have many more underlying values than those presented here; however, to illustrate our argument, we identify the most overt representations. (Indeed, so subtly are the values embedded that few recognize that the term least restrictive environment, which forms the philosophical basis for special education program options, originates from the capitalist concept of free trade.) For instance, the value of individualism underlies the principles of due process and individualized, appropriate education, whereas the principles of parent participation and the LRE are grounded in the right to freedom of choice. Similarly, the value of equity is embedded in the principles of zero reject, nondiscriminatory assessment, and parent participation.

We also discuss the implications of these value-embedded principles for families of children with disabilities who may not subscribe to the same values and must negotiate what Cutler (1993) referred to as the "special education maze." It is not our purpose to impute invidious intent to IDEA because it is a product of mainstream culture; as such, it is most aptly suited to the values and, therefore, the needs of the members of the culture (although some might argue that its implementation has rendered it less effective). Nevertheless, this implicit congruence of value system and policy may be problematic for culturally diverse families.

 

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Individualism in IDEA   The principle of individualized and appropriate education operationalizes the idea that all children have the right to education and that this education must be meaningful and appropriate to each individual's level of skills. Based on the assumption that the individual, not society, comes first, the focus for all education service programming is on the individual; for instance, "person-centered planning" (Turnbull & Turnbull, 1997) places the individual with disabilities at the center of a universe that consists of pertinent domains, such as home, school, and community. Although in an individualized family service plan (IFSP) the unit of analysis might shift a little to accommodate the family, the focus is still on the infant or the toddler with disabilities as professionals identify supports and services that families may need to meet the child's needs.

Furthermore, because the purpose of education is to provide students with the skills that they would need to acquire a job and become independent, productive adults (Margonis, 1992), the underlying assumption in this principle is that a meaningful education for children with disabilities maximizes their potential toward the ultimate goal of independence: open, competitive employment (Powers, Singer, & Sowers, 1996). Such a high value is placed on individuals' becoming self-reliant and responsible for making their own life choices that these outcomes are a major part of most individualized education programs (IEPs). Thus, the concept of individualism is embedded in the notions of maximization of potential, competitive open employment, and self-reliance and autonomy.

In the principle of procedural due process, individualism provides the underpinning for the idea that all citizens have rights that are protected under the law; indeed, parents of children with disabilities have the right to be told their rights specific to their child's education. Similarly, a major aspect of self-advocacy curriculum consists of informing people with disabilities of their rights so that they can demand their entitlements and protest if denied them. Implicit in this argument is the individualistic belief that people are responsible for ensuring their own protection. In other words, although the statutes entitle individuals to protection under the law, ensuring that protection is up to the person, as this action guide for parents illustrates:

If you buy a toaster that doesn't work as it's supposed to, you take action. . . . You don't wring your hands and wait for the company to find you. It's the same with IDEA. . . . The full implementation of the law depends on parents. (Cutler, 1993, p. 3)

An important aspect of this notion of personal responsibility and self-determination is the right to protest, possibly the most individualistic feature of the principle of due process. Litigation is a process of dispute resolution that involves formal legal mechanisms; the process can be initiated by ordinary citizens and is not imposed from the top down (Turnbull & Turnbull, 1998). Friedman (1996) argued that the tendency to sue is a structural and cultural feature of American society that emerges from modern individualism. As he stated, "It would be hard to imagine much litigation among people who truly believe that it is wrong to make a fuss, or who value harmony and compromise above most other values" (Friedman, 1996, p. 58). What is most significant is that it assumes that individuals would be able to assume the level of assertiveness that is needed for claiming their rights and be aware of the appropriate avenues for redress, as this example of an African American mother illustrates. On discovering that her daughter with disabilities was to be placed in a program that was inappropriate to her needs, A. Johnson did the following:

I called the local television stations and told them that I'd been trying to communicate with the [school] district and they wouldn't [respond], and somebody sent a camera team out to the district office and I had a little picket sign that said the school district would not talk to parents, only media. And I walked up and down with that sign for awhile and no one from the school district came out. So finally I just went into the office of one of the school district's personnel and talked to them. And after having tried to resolve that problem for maybe a week or so, it was resolved that afternoon. (Personal communication, April 29, 1997)

Friedman suggested that the increase in litigation is in part due to the increase in the scope of the law to a point that almost all areas of life are "potentially justiciable" (1990, p. 16). By mandating an education for all children with disabilities, for instance, the legal system opened the door for parents to protest the violation of this right. The paradox is that although the mandate for parent participation requires school personnel to involve parents in the decision-making process and establish collaborative partnerships, the principle of due process pits parents and professionals against each other and creates adversarial conditions.

 

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Choice in IDEA    Implicit in the right to freedom of choice are the individualistic beliefs that each person may -- indeed, has the right to -- aspire to the valued goal of upward social mobility (although the reality of achievement is not guaranteed) and that no individual should be placed at a disadvantage as a result of "immutable characteristics," or those aspects of self that are not within a person's choice, such as disability or gender (Friedman, 1996). In other words, all citizens have the right to the pursuit of happiness and can choose how they wish to attain this goal. Society then distinguishes those who appear to be capable and choose not to, for instance, in the commonly held perception that the poor are lazy and poor of their own making, and those who cannot because they possess an immutable characteristic.

Certain legal provisions guarantee freedom of choice to ensure that individuals are not placed at a disadvantage because they cannot choose their personal characteristics. Although these compensatory provisions -- top-down measures -- could be interpreted as welfare or charity, they are defined as entitlements, or rights, that support an independent way of life (Friedman, 1990). In other words, the opportunities to make choices are "rights, not favors" (Cutler, 1993, p. 9), precisely because they enable autonomy and choice making. This distinction of "rights, not favors" is crucial because it contributes to the culture of individual ownership that enhances the sense of personal outrage and, as noted previously, raises the likelihood of conflict resolution through confrontation rather than mediation or "simply swallowing one's anger" (Friedman, 1996, p. 58).

In IDEA, choice is embedded in the principles of LRE and parent participation. The principle of LRE, through its programmatic model of a cascade of services (Turnbull, Turnbull, Shank, & Leal, 1999), is most closely identified with the value of choice. In its original intention, this model of services ran along a continuum of environments from most segregated and with the highest intensity of services to least segregated and with the lowest intensity of services (Taylor, 1988) to provide the most individualized -- almost customized -- educational, vocational, and residential environments for students and adults with disabilities (Bruininks & Lakin, 1985). Similarly, the principle of parent participation, in giving parents the right, among others, to choose from this range of programmatic options, exemplifies the "socialized expectation of participatory democracy" (Marshall et al., 1989, p. 70) that citizens have some choice in decisions about services that they use (Marshall et al., 1989; Peterson & Noyes, 1997; Ravitch, 1997). Furthermore, challenging the emphasis on professional decision making, the principle that parents should participate in school policy and programming is another assertion of the choice value.

We acknowledge that, in reality, however, most parents do not have much choice, in terms of services. Policy analysts suggest that this is because there is an inherent tension between equity and choice: Equity increases as choice decreases (Margonis, 1992; Marshall et al., 1989; Ravitch, 1997). The tension exists in terms of how resources are allocated. The greater the effort made to distribute resources and services equitably, the less the choice for the recipients of these services. When given more choice for interpretation, school systems often will decide that providing individualized, choice-based services for all is not feasible and that distributing equitably without personal choice is better than offering choices to some and leaving few or no resources for many (Marshall et al., 1989).

 

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Equity in IDEA    The value of equity is embedded in the principles of zero reject, nondiscriminatory assessment, and parent participation. Behind the principle of zero reject is a long history that overlays the value of equity. As the role of a child came to be perceived increasingly as that of student, schooling for all children was mandated to avoid inequities and was made available through universal primary education (Turnbull & Turnbull, 1998). Next, arguments against racial segregation in schools were made on the grounds of inequity, that separate schools provided inferior education to certain groups of students on the basis of an immutable characteristic -- their race -- and placed them at a disadvantage for making equal life choices (Ravitch, 1997). These precedents provided the framework for mandating an education for students with disabilities; excluding students with disabilities from public schools was a discriminatory act because the basis for exclusion was their disability, another immutable characteristic. In addition, the equal protection and equal access doctrines provided the context for the zero-reject policy. Now, students with disabilities cannot be denied an education; furthermore, the education that they receive must enable them as adults to have access to the same life choices as people without disabilities.

Equity also is the underpinning of the principle of nondiscriminatory evaluation. For instance, the mandate for fair assessment and labeling is based on the recognition that classifying students as having a disability when they do not or classifying them incorrectly may deny them equal opportunities to an education (Turnbull & Turnbull, 1998). Furthermore, it acknowledges that there is a disproportionate representation of culturally and linguistically diverse students in special education, which would indicate discrimination on the grounds of race and cultural background (Heller et al., 1982; IDEA Amendments of 1997).

Finally, the ideal of participatory democracy is embedded in the principle of parent participation, which entitles parents to share as equal partners with professionals in the decision-making process of their child's education. On the understanding that parents act on behalf of their minor child, this principle ensures parents' rights to exercise their child's rights to an education. As noted previously, however, when placed in conjunction with the principle of due process, this requirement creates adversarial conditions between parents and professionals. Furthermore, school districts all too often prefer to abide by the letter, not the spirit, of the law so that parent participation is more "compliance than communication" (Harry, Allen, & McLaughlin, 1995). Because policy determines special education practice, it is crucial that professionals become aware of these cultural underpinnings, particularly when dealing with families who may not uphold these values and may have differing concepts of self, immutable characteristics, and status.

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Culture in Special Education:  Building Reciprocal Family Provider Relationships