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Making sense of disability: low-income, Puerto Rican parents' theories of the problem.

In the face of the rapidly increasing cultural diversity of the United States, the special education system is faced with the challenge of explaining its services and practices to people who may hold radically different types of cultural understanding, assumptions, and expectations regarding education. Current demographic projections for the 21st century (Hodgkinson, 1985) have underscored the urgency of finding radical solutions for the evident mismatch between school systems and many of those they serve.

This article is concerned with one aspect of this mismatch--the potential impact on parents of cross-cultural misunderstanding. The mandate for the participation of parents in the placement process should serve as a protection to students who might be inappropriately placed in special education programs and should provide assistance to educators in the decision-making process. However, unless professionals working with culturally different parents can find effective means of ensuring a shared understanding of the meaning of special education placement, the intent of the law will be seriously undermined.

Using the findings of an ethnographic study of low-income Puerto Rican parents' views, this article demonstrates both the impact of cross-cultural misunderstanding and the tremendous potential of parents as effective collaborators in the education process. The concerns of the parents centered on conflicting interpretations of the concept of disability and on parents' provision of alternative explanations for their children's learning difficulties. Cultural differences not-withstanding, the parents' explanations of their children's difficulties were very much in line with some of the major debates current in the field, that is, arguments concerning labeling as well as the debate on appropriate assessment and instruction of cultural and linguistic minority students.

PARENTS' VIEWS OF LABELING

Official definitions of mild mental retardation emphasize that the concept does not include the expectation of biologically based, permanent, and comprehensive incompetence. Nevertheless, the term continues to evoke such an impression, partly because the same term is used for individuals with much more severe intellectual limitations (Reschly, 1987), and partly because the term disability inevitably suggests a deficit within the individual.

A small but consistent body of literature on parents' reactions to labeling reflects this concern. Parents have been shown to be more accepting of terms such as brain injured (Barsch, 1961), learning disabled, and slow learner (Wolfensberger & Kurtz, 1974) than of retardation-related labels. The greater social desirability of the term learning disabled generally reflects the notion of an impairment that is specific rather than global in nature and therefore less stigmatizing to the image of the child as a whole person. Parents' preference for this type of description was observed by Smith, Osborne, Crim, and Rhu (1986). These researchers compared the definitions of learning disability given by 129 parents and 137 school personnel and found that parents tended to describe their children's difficulties in terms of physical disorders and attention span. The authors interpreted this tendency as a protective device on the part of parents to "neutralize" the social stigma attached to broader interpretations. On the other hand, Pollack (1985) pointed to potential negative effects if parents cling to such definitions to escape facing children's real needs. In case studies of upper-middle-class professional families, Pollack found that parents actively sought the "learning disabled" label, in what seemed to be an effort to deflect responsibility for negative familial dynamics underlying the child's difficulties.

Meanwhile, it is also likely that parents might be influenced by terminology they perceive to be negative. For example, Coleman (1984) found that mothers of children labeled learning disabled estimated their children's self-concept to be lower than the ratings actually given by the children themselves, perhaps because of the mothers' knowledge of social judgments. In addition, Kaufman (1982) found that mothers rated video-taped children more negatively when they were informed that the children were labeled mentally retarded rather than developmentally delayed.

It is important to distinguish between parents' reactions to the labels per se, and their estimations of their children's capabilities. Wolfensberger and Kurtz (1974) found that although parents' estimations of children's mental age and functioning agreed with those of professionals, they tended to reject retardation-related labels. Thus, parents' disagreement over any particular label does not necessarily mean that they do not recognize their children's difficulties, but rather that they interpret and name them differently.

These findings are in keeping with commonsense expectations of parents' need to protect their children and families from stigma. Further, it is in keeping with Goffman's (1963) well-known consideration of stigma, in which he observes that labeled persons themselves may engage in actions designed to camouflage their difference so as to "pass" for normal. This theory was applied by Edgerton (1967) to his findings that previously institutionalized persons labeled mentally retarded rejected the label and expended considerable energy in disguising their deviance. Edgerton referred to this self-defensive mechanism as a "cloak of competence." His follow-up study 10 years later, however, found that this concern was no longer central in the lives of these persons; he concluded that this related to their increased distance from the stigma of the institution. More recently, Zetlin and Turner (1984) identified different types of self-perceptions among such persons, which included both "acceptors" and "deniers" of the label, and argued that one significant source of such reactions was the way parents had explained their children's limitations to them.

It is important to understand the meaning of the concept of "passing." A standard that has been established by society for the identification of deviance does not represent objective reality or "truth," but simply a social agreement as to the definition of deviance. Indeed, labeling theory, as set forth by theorists such as Lofland (1969) and Becker (1963), emphasizes that definitions of deviance are social constructions negotiated by those with official power to label. Bogdan and Taylor's (1982) life histories of persons labeled mentally retarded have demonstrated that such persons' self-identifications may differ sharply from the way society has identified them. Bogdan and Taylor pointed out that these individuals' rejection of society's label simply reveals the existence of differing perspectives, thus underscoring the socially negotiated nature of the labeling process. In other words, because a person engages in denial, one cannot assume that the denier is inherently wrong, and the official labeler is right, since the application of the label is but a social decision reflecting a societal value. To attempt to "pass" is simply to assert one's self-definition over the definition imposed by society.

Parental rejection of labels for their children underscores the highly differentiated response of individuals to their loved ones, whom they see as individuals with behaviors that may be recognizably different, but which do not necessarily render the whole individual "deviant" and therefore warrant a deviant classification. Thus, when professionals say that parents do not accept a child's classification, it should not be assumed that the professional is right and the parent wrong, but rather that both are using different criteria for describing the child. It would be more appropriate to describe the parent as disagreeing with the label than as failing to accept it.

Most studies of parents' views of labeling were either conducted with white populations, or else did not specify differences in responses between racially different groups. Studies of non-white parents' views of the mental retardation label per se are few, the best known being Mercer's (1972) report of interviews with Black and Hispanic parents who explicitly rejected the appropriateness of the label for their children. These parents felt that the special education classes into which the children were placed offered no remediation to their learning difficulties. Marion (1980) has also reported that Black parents have expressed resentment at the disproportionate classification and special education placement of their children.

Although the impact of the "mild mental retardation" label is important for all students and their families, the decades-long controversy has been fueled by the overrepresentation of minority students in special education programs (Dunn, 1968; Mercer, 1973). This continuing concern has more recently focused on the pressing need for more appropriate and effective methods of assessment and instruction for cultural and linguistic minority students (Duran, 1989; Figueroa, 1989; Ortiz & Polyzoi, 1986). The intensity of the debate reflects the elusive nature of the search for a dividing line between special and regular education, while the arbitrariness of the designation "disability" for many students with mild learning disorders illustrates that the concept is more a reflection of social values than of objective reality. For many minority students, underachievement is the point at which regular and special education meet, with many students from what has been called the "mental withdrawal--grade retention--drop-out syndrome" (Stein, 1986), crossing the border from "normalcy" to "disability."

HISPANIC PARENTS AND SPECIAL EDUCATION

Since Mercer's (1972) study of parents' opinions, which was conducted before the passage of Public Law 94-142, literature focusing on Hispanic parents has centered on their knowledge of and participation in the education process. Documentation so far indicates that parents place great value on education and express faith in the schools, but that their knowledge of what actually goes on in schools in the United States may be minimal (Condon, Peters, & Sueiro-Ross, 1979; Delgado-Gaitan, 1987). Studies focusing on special education show a similar pattern, indicating that there is often no parallel in the families' home countries (Figler, 1981; Lynch & Stein, 1987) and that cultural meanings attached to concepts of disability may be very different from those in the United States (Condon et al., 1979; Correa, 1989; Figler, 1981). Further, a recent ethnographic study by Bennett (1988) concluded that the discourse of parent-professional interactions is so structured as to render parents effectively powerless as partners in their children's educational careers.

The present study offers an additional dimension to the literature on Hispanic families' interaction with special education by seeking parents' actual definitions of disability, as well as their reactions to the experience of their children's classification and placement in special education programs. Further, the study shows that such parents can be very perceptive about their children's difficulties and, therefore, have a great deal to contribute to an effective parent-professional partnership.

DESIGN OF THE STUDY

The findings reported in this article are part of a larger data set from an ethnographic study of low-income, Puerto Rican-American parents' views of special education (Harry, 1992). The primary aim of the study was to examine the role of culture in parents' interpretations of their children's special education placement. A secondary aim was to examine the extent and quality of the parents' interaction with the special education system, as well as factors that facilitate or obstruct their participation. This article addresses only the findings related to the first of these aims.

Participants were 12 Puerto Rican-American families residing in a low-income, largely Hispanic community, in a medium-sized city in the northeast. In three families, both fathers and mothers were participants, while in the other nine, only mothers and one grandmother participated. Spanish was the language of the homes; only one mother, who was born on the mainland, was a native speaker of English. The families had lived between 2 and 12 years on the mainland, and 11 families were currently receiving welfare benefits. Only two of the mothers had completed high school, most having left school between the fourth and ninth grades, while few of the fathers had gone beyond the fifth grade.

Although the sample number was small, these 12 families represented 17 children in special education programs, which amounted to 35% of the 48 Puerto Rican students enrolled in special education programs in the school district. All but one of these 48 were classified as having mild disabilities, while among the sample children 6 were classified as mentally retarded and 11 as learning disabled.

The parents were contacted by two Hispanic social workers affiliated with a neighborhood voluntary agency. This approach was important because it allowed the researcher to be presented as an independent agent, not affiliated with or accountable to the school system and therefore in a better position to gain parents' honest opinions of the system. Selection of the families was based on personal judgments by the social workers concerning which families they felt would be most accessible and most willing to participate. Families were not chosen because of any prior knowledge regarding the parents' experiences with the school system. The researcher was introduced to the parents by the social workers and subsequently proceeded independently of them.

Over a period of 9 months, information was collected through repeated unstructured interviews, conducted in the ethnographic tradition (Spradley, 1979; Bogdan & Biklen, 1982), with recurring feedback from researcher to participants to ensure accuracy and correct interpretation. At least three taped interviews were held with each family. The interviews were conducted by the researcher in participants' homes in Spanish or a mixture of Spanish and English, as appropriate; further, additional informal interviews were held with most parents. A second method of data collection was participant observation, conducted primarily in the style of "observer as participant" (McCall & Simmons, 1969). These included seven meetings between parents and school personnel, as well as a variety of family and community activities. Triangulation of data was achieved by examination of students' school documents and by interviews with 12 district professionals involved in special education policy or service delivery to Spanish-speaking families.

The findings of this study are based on the views of a small group of parents from a particular background, that is, Puerto Rican families of low income and relatively little formal education, who might be described as being in the early stages of acculturation to the culture of the U.S. mainland. Their voices cannot be expected to be representative of all culturally different parents, or even of all Hispanic parents. However, though the study cannot claim to be generalizable to other populations, the in-depth, recursive nature of the interview and observation methodology ensures that an accurate picture of parents' views has been obtained. In other words, one of the main strengths of this methodology lies in its claim to validity--the notion that what it claims to demonstrate is in fact what has been studied, and therefore that one might expect similar findings with a similar population under similar circumstances.

Patton (1980) has offered a thoughtful discussion of the relevance of generalizability to qualitative data and concludes that the strength of the method lies in the provision of perspective and of well-grounded information that can lead to action. In the case of this study, the clarity of participants' perspectives demonstrates the principle of cultural relativity, which goes beyond the particular views of a given group and which can serve as a guide for professionals working with any significantly different cultural group.

FINDINGS

This article focuses on two central findings: first, important ways in which the meaning of disability differed along cultural lines for these families and, second, that the parents held their own theories explaining their children's difficulties. With regard to the issue of culturally based meanings of disability, the data showed two particular trends:

1. The parameters of "normalcy" in terms of children's developments were much wider than those used by the educational system.

2. Different designations for disability led to parents' confusion of terms like handicapped and retarded with more extreme forms of deviance.

This section outlines, first, the meaning of the labels and, second, parents' theories of their children's problems.

The Meaning of the Labels

Francisca, a woman of 55, had years of experience with the special education system. Her daughter, Angelica, had been placed in a program for children labeled "educable mentally retarded" when she was between the ages of 8 and 13. At the time of the study, she had returned to the regular class, but Francisca's granddaughter, Rosita, was currently in special education, classified as "mildly mentally retarded." The following is Francisca's account of her daughter's initial referral to special education. This story is representative of the way in which many families described the initial referral of a child for special education services. For many it was a moment of crisis, marking the onset of a period of confusion and distress.

When the children were small I always used to go and collect them from school. One day, when my youngest daughter was in the second grade, I went to get her and as I was walking along Spruce Street the child came running toward me screaming. I was very frightened and thought that something terrible had happened. When she got close to me she grabbed me and threw herself on me and shrieked, "Mammi!" I said, "My God! What has happened to you?" And she said to me, "The teacher told me that I must not come to her class anymore, that she is not going to struggle with me anymore because I am crazy!"

So I went to the school and I told them the child is not crazy but they started sending me these letters and I took them to the Latin American Association and asked someone what they said and they told me it said the child is retarded. They put her in the special class although I told them at the meeting that no person who is retarded, who does not have a good mind, can do the hard school work she does. I told them to stop sending these letters because the child sees them, she knows English and she reads them and she gets very upset and says, "I am not going back to the school unless they stop saying I am crazy because I am not crazy."

Now they are saying the same thing about my granddaughter, but she has nothing wrong with her mind either. She behaves well and she speaks clearly in both Spanish and English. Why do they say she is retarded? ...

They say that the word "handicap" means a lot of things, it doesn't just mean that a person is crazy. But for us, Puerto Ricans, we still understand this word as "crazy." For me, a person who is handicapped is a person who is not of sound mind or has problems in speech or some problem of the hands or legs. But my children have nothing like that, thanks to God and the Virgin! (Francisca)

Most parents were initially as incredulous as Francisca at the assignment of the label "mentally retarded." Coming from a background where daily affairs can be managed by a healthy body, common sense, and elementary academic skills, parents explained that the label "retarded" or "handicapped" would be applied only to someone whose competence is severely impaired or who is considered mentally deranged. Thus, the labeling of Francisca's daughter and granddaughter seemed a contradiction in terms: How could a person who is retarded read and become incensed by the very letter that describes her as retarded? How could a 6 1/2-year-old who speaks both English and Spanish be retarded?

In addition to different parameters for normal development, the word "retardado" was tied to the general category of mental illness--a tremendously stigmatized form of social deviance. Thus the term would only be used to denote behavior and a functional level seriously different from the norm. One mother, Ana, speaking in terms very similar to those of Francisca, made a clear distinction between "retarded" and "handicapped":

For me, retarded is crazy; in Spanish that's "retardado." For me, the word "handicap" means a person who is incapacitated, like mentally, or missing a leg, or who is blind or deaf, who cannot work and cannot do anything . . . a person who is invalid, useless. . . . But for Americans, it is a different thing--for them, "handicap" is everybody! (Ana)

For parents to accept the use of the word retarded they had to start by differentiating it from the word loco/crazy, and most parents who made this transition substituted the word slow. However, to reach this level of agreement with the school, parents would still need to see the child as significantly different from their own expectations. This became confusing for parents whose own level of education was at the third or fourth grade and who had a child already in the fifth or sixth, or who was bilingual while the parent found English difficult to learn. One mother, Carmen, exclaimed angrily that the work her daughter was doing was sometimes so hard that "neither her father nor I can do it!"

The term learning disabled did not evoke the same confusion for parents, but neither did they accept it as an appropriate description of their children's difficulties. They readily understood the intent of the term, and did not find it offensive since it acknowledged the overall developmental competence of the children. However, with only one exception, the notion of a deficit intrinsic to the child was rejected by the parents; in other words, they did not interpret the difficulty as a "disability." Their explanations are described in the next section.

Parents' Theories

Parents' interpretations of their children's difficulties varied in specific ways; but from all the interviews there emerged three distinct themes: the importance of family identity in the interpretation of a child's developmental patterns; the detrimental effects of second-language acquisition on school learning; and the detrimental effects of educational practices such as frequent changes in placement, out-of-neighborhood placement, an unchallenging curriculum, and inflexible reading instruction.

Family Identity. The strong familism of Hispanic cultures is well documented (Condon et al., 1979). With reference to Puerto Rican people in particular, Canino (1980) has described the typical family as tending to show an "enmeshed" rather than a "disengaged" structure. In this pattern, there is a strong emphasis on the family's identity as a group rather than as a collection of individuals, which, Canino says, may lead to features such as, "prolonged mother-child interaction," overlapping of nuclear and extended family roles, and a perception of illness as a problem that resides within the family rather than solely within the individual.

This concept of the family became a crucial factor in some parents' interpretations of their children's being described as "handicapped." For example, some parents said they felt that their families had been disgraced because the social histories written about the children gave the impression that the children's difficulties resulted from immorality in the family. In addition to these families' traditional association of "retardation" with mental illness, disability thus took on an extra stigma, that of being tied to bad family character.

Parents' comments also demonstrated that although a strong concept of group identity makes the whole group vulnerable, there is a resilience created by these same assumptions. That is, inasmuch as the individual may bring shame to the group, so may aspects of the groups's identity serve to protect the individual. Thus, all parents spoke of their children's strengths and weaknesses in terms of family characteristics.

There is a certain acceptability in a child's difficulties "coming from the father," or being "just like his aunt." Some mothers modified the term "retarded" and other rejected it outright; but in either case they described the children in terms of marked family traits not considered to be outside the range of normal behavior. Thus, they felt that the school's labeling process did not recognize the child's individuality and family identity. Francisca, for example, explained both her daughter's and her granddaughter's difficulties at school in terms of the school's preference for more expressive types of personality. Her children, she said, were very quiet, both by heredity and because of the family's life style:

As I told them at the school, the only problem my child has is that she is very quiet. She does not talk much. But this quietness comes from the family because the father of these children is very silent. If you speak to him he speaks, if you greet him he greets you, if not, nothing!. . . So this is by heredity; the child has no problem in speech nor is she retarded or anything. . . .

And my granddaughter--she is very timid, you know. I brought her up here and she does not play with other children outside, only at school. At home I only let her go outside if she goes with the family, but alone, no. (Francisca)

In a similar vein, another mother, Ramona, acknowledged that her 10-year-old daughter was progressing more slowly than most children in academic work, but did not agree that this meant she was mentally retarded. Rather, she described her daughter as very unsure of herself because of extreme shyness, similar to that of her "father's family" and of Ramona herself. Ana, whose 9-year-old, Gina, was also classified as "mentally retarded," agreed that her daughter needed a special class because she was slow in learning and her behavior was very erratic. Ana understood what "Americans" mean by "retarded" but considered it irrelevant: Gina, she said, is simply "like her father." He never did learn to read and write and has a quick temper. He has always been like that, and she feared that Gina would be too:

I think she won't change because she is the same thing as my husband. He is always "con coraje" (quick to anger). You tell him something, he talks to you back. He can't stay quiet. He spoils Gina--he says, "I love her because she is just like me!" (Ana)

Learning Disability: "A causa del idioma/Because of the language." Parents of children in both learning disability and mental retardation classifications tended to place their children's difficulties in the context of family identity. Beyond this, however, parents also placed a great deal of responsibility for children's difficulties on the school. Here a noticeable pattern emerged regarding the disability label. Parents of children labeled learning disabled focused on the common theme of "confusion" resulting from the change from Spanish to English, and one parent specifically charged the method of teaching reading as the source of her daughter's difficulties. Parents of children labeled mentally retarded, however, focused on other detrimental educational practices.

Because Spanish was the primary language in all homes in the study, even those children born in the United States learned Spanish as their first language. Thus, English became a requirement only upon entrance into school, which, for most, was between kindergarten and the third grade. These children were placed directly into regular education English-speaking classes with varying amounts of "pull-out" for the "English as a Second Language" (ESL) program. Those labeled mentally retarded were identified within a year or two, and those labeled learning disabled were referred to special education between the second and sixth grades. All of the latter group had repeated one or, in several cases, two grades before being referred.

Parents said that the children had been "doing fine" in prekindergarten and kindergarten and that their problems began when the child entered the elementary grades. Of those children who had started school in Puerto Rico, most of the parents said that the child had no problem in school there. Only two children, who had behavior problems, had been considered for special education placement in Puerto Rico.

Some parents interpreted the second-language difficulties in school as a reflection of teachers' intolerance and unreasonable expectation. Josefina, for example, whose 14-year-old son had been in a special education class since the fourth grade, pointed to an undue focus on students' accents, a point which has also been made by researchers Moll and Diaz (1987). To quote Josefina:

It is all because of the language--nothing more! At first my son did not know English, but he had to learn to read it and write it. Then when he learned it, his pronunciation was not perfect like an American because he must have a Puerto Rican accent, but they wanted him to know it correctly. When I went to the meeting they said that the child is at a high level in math but the reading.... So I told them that I suppose that a child from Puerto Rico could not learn English so quickly--he can learn to read it but not so perfectly as an American! (Josefina)

Another mother, Delia, illustrated the impact of the language problem by drawing a comparison between her older children, who began school in Puerto Rico and were doing "all right" until they entered the first and second grades in the United States, and her youngest child, who was born in the United States and went to prekindergarten here. She said that at the end of the semester there was a family joke when the little girl came home from her kindergarten class with a certificate for good reading; the older children laughed, but were really embarrassed because they were behind in reading. Delia concluded that the difference was that "the little girl started here in the pre-k, not like the others starting in Puerto Rico and then coming to this country to meet with a new language."

Although parents were adamant regarding the role of language confusion, it was evident that they did not have a clear idea of exactly how this worked in school. Parents used the terms ESL and bilingual interchangeably and expressed the belief that this program was the source of the children's confusion. However, none of the children in the study were old enough to have been in the district's bilingual program, which had been discontinued about 8 years before the study began.

Another aspect of the comment that "bilingual or ESL" classes confused children is that this belief presented a dilemma for most of the parents: They felt that a choice had to be made between English and Spanish, and all were adamant that they would choose English for their children. Yet they thought it a shame that the children were not learning to read and write in Spanish, and might even forget the language after a while. For families who thought they might like to return to Puerto Rico, this was particularly worrying. Others simply felt that the ability to speak two languages should be an advantage.

Teaching of Reading. The teaching of reading became the focus of one mother's concern. Dora, whose daughter, Maria, was labeled learning disabled, was pursuing an understanding of the methodology used to teach reading and had concluded that inflexible use of a direct-instruction, phonic method, along with repeated grade retention, had compounded her daughter's language-induced difficulties. Dora did not consider her daughter as learning disabled, because, she said:

When I started teaching her to read in kindergarten, I taught her to read the whole word and she was learning, but the way they are teaching her now is confusing her. All children are not the same, and she is not learning by this method. For one thing, it is only phonetics; and she became confused when she started school and had to learn the difference between the letters ABC, and the sounds you have to say in English. (Dora)

Both Dora's account and her daughter's school records showed that although Maria had passed the first reading level at the end of the second grade, in repeating the grade she had, somehow, been put back to the same level. Toward the end of her repeating year, Maria's report indicated that she still had not mastered this reading level. Her mother was incredulous:

It is a very hard thing to understand! It is impossible that Maria could stay a whole year on the same reading level, especially when she had passed it the year before! (Dora)

Placement and Curriculum in the Special Class.

Although parents of children labeled mentally retarded generally agreed that their children were slow in development, they argued that two aspects of special education programming had exacerbated their children's difficulties and, in Ana's words, had done the children "a lot of harm." The detrimental practices identified were, first, frequent changes of school and, second, an infantile and repetitive curriculum in the special class.

The frequent changes of placement reflected the school district's pattern of moving children labeled mentally retarded to whatever was considered the most appropriate self-contained program. This was devastating for some children and for their parents, who, for the most part, spent most of their time in their own neighborhood and generally considered the city at large dangerous and alien. Rita's daughter, Marta, for example, had been moved to five different schools between ages 6 and 9, and had finally been placed in a school where the district said she would remain until age 12. Similarly, Francisca's granddaughter, Angelica, had been placed in three different schools between the ages of 5 and 7, and Francisca had recently refused to allow her to be moved to a fourth. Ana's daughter, Gina, had experienced four school changes by the age of 9. The parents were angry about the moves and about the children's being placed in schools outside of the neighborhood.

These parents were also angry about the nature of the curriculum in special classes, which they all said taught only kindergarten activities such as painting and coloring. In Francisca's words:

They give her a little paper with animals and she has to mark if it is a cow or a dog, and things like that! I see her as much more alert than that and she could learn to count and write.... All day long she is wasting time, because they are not teaching her anything. If she needs to learn to paint I could teach her at home! (Francisca)

Ana had encountered the same problem when her son had been placed in special education some years before in another city. Upon relocating, she found her own way of solving the problem:

When I moved down here I was tired of Jose staying down in the special class. He was always in kindergarten; they never let him pass to the first grade because they say he doesn't know the work. But how can Jose know something if you don't tell him how to do it? All they did was painting and some little stuff--every day the same thing. So when I came here I told them I lost the school papers and I put him in regular first grade. He failed one year, but the next year he passed.... He never failed since then, and he gets As and Bs in the regular class because he is very intelligent. (Ana)

Parents' Views of Children's Progress

Despite disagreement with the school's interpretations of the meaning of their children's difficulties, parents' satisfaction with the effectiveness of special education varied. As indicated previously, the exigencies of special class placement were generally seen as a deterrent to children's progress for those labeled mentally retarded. On the other hand, some parents of children labeled learning disabled felt that the resource room program was helping their child. Margarita and Delia, for example, who both explained their children's problems in terms of second-language "confusion," said that the children were progressing better as a result of the special attention. Ines, the only mother who said she had come to the United States because of her son's learning difficulties, felt that the school was doing its best and she was getting the services she came for. Others, however, such as Dora and Josefina, were skeptical, believing that a combination of intolerance and inappropriate methods continued to hold the children back.

Yet it is important to note that the parents did not object to special assistance as such. On the contrary, they all said that small-group instruction should be the main benefit of special education. Even parents who considered the curriculum or the teaching methods inappropriate also felt that the child "would not make it" in a large class. In sum, parents mostly agreed that the children were having difficulty and were willing to accept appropriate and effective help from special education, but varied in their assessment of the actual success of these programs.

DISCUSSION

This study of parents' views makes two crucial points for professionals in special education: first, it illustrates the argument that conceptions of disability are socially constructed (Bogdan & Knoll, 1988) and that, in the words of Irving Goffman, "The normal and the stigmatized are not persons but rather perspectives" (Goffman, 1963, p. 138). Second, the study shows a cluster of folk theories that are very much in line with certain current arguments in the field of special education.

Parents' Theories as Cultural Perspectives

The perspectives of these 12 Puerto Rican families should sharpen educators' awareness of the potential for cross-cultural misunderstanding inherent in the culturally specific classification system used by special education. As professionals, we need to be reminded that any deviance classification is based on the values and expectations of a society in a particular era. Indeed, it is likely that, in a more rural and less technological America, mainstream conceptions of disability may have been considerably different.

The language of the law (the Individuals with Disabilities Education Act), however, and the medical model it espouses, reflect none of this ambiguity. Indeed, the process of reification, by which a theoretical construct is treated as objective reality (Bowers, 1984), is evident in the conception of disability inherent in special education theory and practice--the belief that a child's failure to master certain skills is indicative of an objectively identifiable intrinsic deficit. The limitations of the assessment process are recognized by the law in its call for measures to ensure unbiased assessment, yet the subjective nature of the process is inescapable and becomes most evident with students from culturally diverse backgrounds.

The interpretation of parents' disagreement as a reflection of cultural difference may be challenged in a number of ways. First, it is appropriate to ask whether these parents' views differ significantly from those of mainstream American parents; second, whether parents are simply engaging in a process of denial to protect their children's and their families' identities; third, whether parents' disagreement simply represents a difference in nomenclature--in this case, a mistaken translation of the term retarded to mean crazy.

Wolfensberger (1983) described the process of stigmatizing in terms of the negative valuing of a characteristic, the subsequent attribution of that characteristic as the defining feature of an individual, and, hence, the ultimate devaluing of the whole individual. Similarly, Goffman (1963) spoke of this process as the "spoiling" or "disgracing" of individual identity. As was indicated by the earlier review of literature, parents' desire to protect their families from such stigma could explain the commonly observed preference for milder, more specific, rather than global labels. The literature also showed that parents disagreed with professionals mostly at the level of naming the problem, not at the level of describing children's performance or behavior. In this regard, the parents in this study showed a pattern similar to what is known about mainstream parents, in that they rejected the labels while acknowledging that their children have difficulties. The reasons for their rejection of these labels, however, were complex.

First, like the mainstream parents in the literature, they found the label "mental retardation" too stigmatizing. This was exacerbated by the fact that the traditional Spanish used by these families does not have a word for retarded, but rather identifies mental disability with mental retardation, under the vernacular term loco (crazy). It is not simply a matter of mistranslation, but a reflection of an absence of distinction between mental illness and intellectual impairment, the latter being considered an impairment only at the more extreme end of the spectrum.

The avoidance of stigma, however, is not the only reason that parents may reject a label. The parents in this study genuinely disagreed that deficits in mastering academic skills were tantamount to a handicap, as was made clear by Francisca's incredulity that a child who can read and who can speak two languages could be considered retarded. The use of academic learning as a criterion for normalcy is clearly related to differing societal norms.

Beyond the issues of stigma and varying societal norms, there is also the question of assumptions about etiology in mild disabilities. The concept of disability, by definition, suggests some impairment intrinsic to the individual. Mainstream parents have argued for more restricted, less global interpretations of children's difficulties, but have not rejected the notion of disability as such. Indeed, it is well known that parents have been a powerful force in the recognition of the existence of learning disabilities. In this study, parents of children labeled mentally retarded, when they accepted their children's delay as an intrinsic characteristic, tended to accept it as falling within the normal framework of the family's identity, and did not define it as a disability. Parents of children labeled learning disabled, on the other hand, explicitly rejected the notion of within-child etiology, identifying the source as extrinsic to the child. This is in keeping with the previously mentioned work of Mercer (1972) and of Marion (1980) with Black and Hispanic parents.

Thus, the views of culturally different parents may differ in some important ways from those of mainstream parents. This study shows how intense can be the stigmatizing effects on families whose cultural base is different, whose knowledge of the school system is minimal, and who already feel powerless and alienated. Correa (1989) made the point that acculturation must be a two way, "reciprocal" process, with professionals in education becoming sensitized to the values and norms of the cultures from which their students come. First, however, professionals must become aware of their own values, and of the fact that most human values are not universal but are generated by the needs of each culture. Such awareness is not too much to ask: It is through the eyes of the school that a child officially comes to be defined as a success or a failure; the school system must, therefore, accept the tremendous responsibility that accompanies such power.

Folk Theories and Professional Arguments

The ability of these parents to identify weaknesses in the education system exemplifies the validity of the law's intention to include parents in the decision-making process, yet it is notable that the discourse between parents and professionals provided no forum for parents' theories to be heard. Indeed, as has been observed elsewhere (Harry, 1992), such discourse is structured so as to exclude and delegitimate views that fall outside the framework of the law's conception of disability.

Marion (1980), in discussing the subordinate role often accorded minority parents, stated that professionals often withhold information on the assumption that such parents are too unsophisticated to benefit from much professional information. Similarly, Sullivan (1980) charged professionals with assuming that low-income parents will accept any evaluation of their children. This study illustrates the perceptiveness of a group of low-income parents who spoke neither the literal nor the metaphorical language of the school. The study offers a small but effective challenge to the recent charge of Dunn (1988) that Hispanic parents' lack of interest is partly responsible for the poor performance of their children. The theories of these parents reflect ongoing debates current among professionals in the field--debates on labeling, on appropriate instruction for bilingual students, and on the efficacy of special class placement.

Labeling. Arguments against the current classification system are no less than 20 years old (Dunn, 1968; Mercer, 1973) and have continued to gain momentum (Gardner, 1982; Reynolds & Lakin, 1987) with regard to both the mild mental retardation construct and learning disabilities. One recommendation for change has been a call for new designations, such as "educational handicap" (Reschly, 1987), or "educationally delayed" (Polloway & Smith, 1987), reflecting the fact that students' difficulties are largely related to academic learning. Indeed, Reschly's argument that students classified as mildly retarded are "inappropriately stigmatized by implicit use of the same continuum for all levels of mental retardation" (Reschly, p. 37) is identical to that of the parents in this study. Goodman (1989), in a study of third-graders' perceptions of the term mentally retarded, has recently demonstrated that this label is a "poor diagnostic term ... embedded in erroneous thinking" (p. 327) and has called for new terminology or classification criteria.

More radical, however, are challenges that call for rejection of categorical eligibility criteria based on the concept of within-child deficits. Such arguments call for a system of service that would reflect the programmatic needs of students or that rely on curriculum-based approaches and dimensional rather than categorical diagnosis (Gerber & Semmel, 1984; Reynolds & Lakin, 1987).

These arguments are even more urgent when applied to students from racially and culturally diverse backgrounds. It is not enough to say that many people misunderstand disability classifications and that it is therefore simply a matter of nomenclature. It is now widely acknowledged that our assessment system is severely limited in its ability to identify the true nature of students' learning difficulties, especially when these students' cultural experiences predispose them to linguistic, cognitive, and behavioral styles that may differ in important ways from what is considered normative on most assessment instruments (Cummins, 1984; Figueroa, 1989). Particularly relevant to the views of parents in this study is the observation that the "learning disability" label is often applied to children whose difficulties are really a reflection of normal second-language development (Ortiz & Polyzoi, 1986).

This study supports the argument that it is time for us to abandon our reliance on a model whose main effect is to locate the source of failure in the child. The concept of disability in the case of underachieving children is simply inadequate and inappropriate in the context of the tremendous diversity of American schools.

Instruction and Efficacy. Research on instruction and efficacy in special education also parallels the interpretations of parents in this study. Cummins (1979, 1984) has argued convincingly that children may demonstrate adequate basic interpersonal competence in a second language while their level of cognitive academic language proficiency may be inadequate to the task of literacy or psychological assessment in the second language. Indeed, the literature on this topic overwhelmingly concurs that to move children to second-language literacy too soon is to set them up for failure in both languages, thus preparing them for low-status roles in the host society, as well as alienation from their native culture (Cordasco, 1976; Lewis, 1980; Ovando & Collier, 1985; Spener, 1988; Stein, 1986).

A crucial outcome of the premature introduction of children to instruction in the second language is grade retention, a feature frequently observed among bilingual students, with a common pattern of "overage" students (Walker, 1987). Among the families in this study, it was not uncommon to find children as much as 3 years older than the usual age for their grade, and it was the rare child who had not repeated at least one grade level.

Besides language of instruction, research is increasingly focusing on the need for culturally sensitive instructional approaches. In contrast to the direct instruction, phonic-based approach used with Dora's daughter in this study, are more holistic, meaning-based approaches recommended currently for students from different cultures (Au, 1981; Ruiz, 1989). Indeed, Figueroa, Fradd, and Correa (1989), in summarizing the findings on assessment and instructional services, call for a paradigm shift from "decontextualized, acultural and asocial" interventions, toward conditions of high context, both in assessment and instructional approaches. Along with this shift, other researchers recommend targeting curricula toward the "upper range of bilingual children's academic, linguistic, and social skills" (Ruiz, p. 130), and viewing the culture from which students come as a resource rather than a deficit (Moll & Diaz, 1987). Like the parents in this study, professionals in the field of special education are calling for effective, challenging, and culturally appropriate programs.

In his proposed framework for the empowerment of minority students, Cummins (1989) has used a sociohistorical perspective to analyze the underachievement of students from what John Ogbu (1978) has called "caste-like minorities." Cummins argued that only through holistic interventions, incorporating cultural/linguistic, community, pedagogical, and assessment needs, will minority students be empowered to achieve to their potential. The input of parents is essential in this process.

Most of the parents in this study said that their children were fine until they started school. This should not be relegated to the status of parent/folk lore: It is, increasingly, the comment of careful scholars who have focused their attention on students from low-status minority groups. Henry Trueba (1989) has put the case succinctly:

These disabilities are an attribute of schools. Children's seeming "unpreparedness" for mainstream schooling is only a measure of the rigidity and ignorance of our school system, which creates handicap out of social and cultural differences. (p. 70)

This study shows that the power of parents may be seriously undermined by culturally different ways of understanding. Yet it also shows that poor parents, with little formal education, and a different language and culture, may, through their own analysis of their children's difficulties, have a significant contribution to make to current debates in the field of special education. This can only underscore Cummins' (1989) call for a collaborative versus an exclusionary approach to defining the roles of families. Students from widely differing cultural backgrounds already comprise the bulk of the population in certain school systems; in the coming century they will no longer be in the minority nationwide. If their parents' voices cannot be listened to, vast numbers of students will be caught between irreconcilable worlds of home and school.

Two years after the completion of this study, a limited follow-up revealed that parents' opinions of their children's performance had not changed. In the words of one mother, Dora, whose apparently very bright 6-year-old was about to fail kindergarten:

Algo esta pasando en la ensenanza, porque la chiquilla es muy normal, y despues de un ano, no pudo aprender a leer ni una palabra! Yo lo siento, pero, es imposible que yo crea una cosa asi! Y siempre la mayoria de los ninos Hispanos tienen problemas en la lectura. Eso yo no comprendo!

(Something is going wrong in the teaching, because the little girl is very normal, and after one year, she has not been able to learn to read even one word! I am sorry, but it is impossible to believe such a thing! And the majority of Hispanic children continue to have problems in reading. I do not understand it!) (Dora)

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