The findings of a portion of a 2-year ethnographic study involving North Indian Hindu immigrants living in the mid-Western United States is discussed. These findings illuminate the ways in which participants think and talk about mental retardation, how this linguistic information was obtained, and the cultural context within which participants have come to hold their beliefs. Implications for special education practice are explored as are some strategies that could be helpful when working with Indian families. Suggestions for future research are included.
In 1998, I began investigating South Asian Indian immigrant cultural beliefs about disability. From 1998 through 2000, my research team and I were particularly interested in beliefs about mental retardation and learning disability held by South Asian Indian American immigrants living in the mid-West. One impetus for this project was the paucity of ethnographic research on Indian beliefs about disability, particularly cognitive disability (e.g., mental retardation, learning disability, and other conditions that affect cognitive functioning and place one in a marginal status). My review of the international literature turned up few studies, even among Indians living in India, in which researchers attempted to understand cognitive disability from a non-Western, Indian perspective. There also is scant information about how Indian beliefs about disability play out in a United States context; consequently, my team and I began work determined to contribute to the emerging body of comparative research in disability studies. In this article I have focused primarily on the portion of my study that illuminates how study participants think and talk about mental retardation.
Near the end of this project, my team discovered a book by Fadiman (1997) entitled The Spirit Catches You and You Fall Down, in which many of the cultural phenomena we uncovered were played out in a slightly different context. Fadiman's study illustrated the pitfalls inherent to interactions between many immigrants and cultural institutions in the United States and suggested that the tensions implied in my study could, themselves, portend consequences for students, teachers, and families. In Fadiman's account of the clash between a California hospital system and a Hmong refugee family from Laos, the family's daughter, Lia, had severe epilepsy. Although the family and Lia's doctors all wanted the best for her, their interactions usually resulted in their inability to collaborate in her treatment. Fadiman wrote:
When Lia was three months old, her older sister Yer slammed the front door of the Lee's apartment. A few moments later, Lia's eyes rolled up, her arms jerked over her head, and she fainted. The Lees had little doubt what had happened. Despite the careful installation of Lia's soul during the hu plig ceremony, the noise of the door had been so profoundly frightening that her soul had fled her body and become lost. They recognized the resulting symptoms as quag dab peg, which means “the spirit catches you and you fall down.” (p. 20)
Lia's doctors, on the other hand, described the Hmong community as not having “the same concepts” as do Western doctors” (Fadiman, 1997). “For instance,” he said:
You can't tell them that somebody is diabetic because their pancreas doesn't work. They don't have a word for pancreas. They don't have the idea for pancreas.… they didn't open people up when they died, they buried them intact. (p. 69)
I argue that similar tensions could exist between many special education practitioners in the United States and South Asian Indian families who have children with mental retardation. In this article possible tensions are uncovered and the way is paved for future research in which investigators can examine the culture conflict in the context of schools.
When Westerners think of Asian Americans, several ethnic groups usually come to mind (Korean, Chinese, Japanese, Vietnamese, Hmong), but Indians from South Asia seldom are thought of as Asian. An example of this is found in a recent book by Lynch and Hanson (1998), in which there are chapters on working with families from a variety of racial or ethnic groups, including families with Asian roots. In the chapter on families with Asian roots, only Asian Pacific Americans are discussed. This trend to narrowly define what constitutes “Asian” or “Asian American” ignores the third fastest growing immigrant subgroup in the United States (U.S. Department of Immigration, 1999) and assumes that, as such, the category of Asian American does not include South Asians. Even Asian American scholars tend to forget that Indians from South Asia are, in fact, Asian (Shankar & Srikanth, 1998). The United States government also has a history of ignoring the Asian/minority status of Indians. Dayal (1998) noted that “until a few years ago they were not recognized as having legal minority status—nor could they fill affirmative action quotas” (p. 236). The absence of research about disability within the South Asian Indian American community and the relative inattention of scholars to South Asians, even in the face of increasing immigration, have generated my interest in studying the South Asian experience as it relates to disability and related educational issues.
The 20 participants in this study fit a common model of first-wave South Asian Indian immigration (Chen, 1999). By first-wave, Chen was referring to the phenomenon of many immigrant populations over time, during which the initial immigrants tended to come from the wealthier classes of the home country, and later immigrants come from less wealthy substrata. Writing about new immigrants, the Shahs, who recently arrived from India, Chen (1999) observed that “it took an hour for the Shahs to achieve what earlier immigrants often could not claim for decades, even generations … comfort and prosperity in suburban America” (p. 1). The Shahs, he noted, traveled from the airport straight to a relative's suburban New Jersey home, where they would live comfortably as they established themselves as new Americans. Like the Shahs, the participants in this study were well-educated professionals who have achieved the “American dream”: a house in the suburbs, a “comfortable” lifestyle, children who attend well-respected schools and universities, a professional career. These are people who have what Chen referred to as social and economic goals for themselves and their families that are consistent with dominant middle-class America.
Participants in the present study were Indian immigrants, most having emigrated from northern India, the Hindi heartland, or the region of India in which Hindi is most widely spoken (Larson, 1995). They referred to themselves as Hindi bhashi (BAH-shee) people, or people whose primary identity is connected to the language and culture of Hindu India. They were members of a Hindu community in the mid-West, and they all spoke fluent Hindi as a first or second language as well as English and at least one other language. In fact, most of these participants spoke at least three languages. Hindi is one of the 18 official languages of India and is commonly spoken by northern Indians (Gupta & Kapoor, 1991; Tharoor, 1994). About 40% of all Indians speak Hindi, making it the most widely used language in India and, with English, the official language for government communications (Larson, 1995).
As in many parts of Asia, religion plays a central role in the culture of India, and, as Hindus, participants were members of the largest religious group from India. It is estimated that 62% to 82% of all Indians are Hindus; Muslims and Christians comprise under 15% (Larson, 1995). This means that over 500 million people in India are Hindu. For those of us born and raised in the United States, it may seem strange discussing religious beliefs in an article about culture and education because United States educational and political values tend to separate discussions of religion from issues such as learning, schooling, and the like.
The influence of Hinduism on the beliefs of the participants is so strong that it warrants some discussion before proceeding. We tend to think of the United States as a “secular state”; however, Bellah, Madsen, Sullivan, Swidler, and Tipton (1985) pointed out that in the United States we adhere to a kind of “civic religion,” or a set of principles, morals, and beliefs that frame our social and political lives and function in much the same way as does traditional religions. As early as 1967, Bellah et al. observed, political life in the United States was strongly influenced by our Judeo-Christian roots: “There actually exists alongside of and rather clearly differentiated from the churches an elaborate and well-institutionalized civil religion in America” (p. 1). Larson (1995) agreed with Bellah et al. and noted that our civic religion “is neither … Christian nor Jewish;th… nor is it simply the general notion of religion as such. It is something in between. It is, as it were, the ‘American way of life’ ” (p. 202). According to Larson, it is the same in India. India considers itself a secular nation–state, but it, too, has layers of civic religion. India's conversations are primarily between Hindus, Muslims, and various sects within these larger groups.
An “understanding of religion is fundamental and basic to an understanding of the civilisation-state of India” (Larson, 1995, p. 163). Radhakrishnan (1956), an important political figure in postcolonial India, argued that “secularism here does not mean irreligion … It proclaims that it lays stress on the universality of spiritual value” (pp. vi, viii). My research findings are consistent with these claims of the interplay between religion and civic life. The Hindu religion, or as these participants referred to it, Hindu philosophy, is a central force in their cultural orientations.
As well-educated members of the middle- and upper-middle classes of India, my participants all had the Indian equivalent of at least a bachelor's degree; most had advanced graduate degrees; and some had doctoral degrees from Western universities. They ranged in age from 25 to 85, and all were nondisabled. (I use disability-first language to be consistent with one school of thought in disability studies, originating from the United Kingdom. There are two basic arguments for disability-first language: to emphasize the identity assigned to people labeled disabled and to indicate that disablement is an active social process imposed upon a person or group from the outside. For further readings on this topic, see Shakespeare and Watson. 1997, Tregaskis, 2002, and Corker and French, 1999, all authors from the United Kingdom.)
The Indian families I solicited for this project were extremely reluctant to talk about disability in the family within their own cultural community and were even more reluctant with members outside their community, unless outsiders were sanctioned by some institution directly serving their children (e.g., schools, hospitals). Near the end of my study, however, I was able to conduct interviews with 2 families who had adult children with developmental disabilities. In addition, 2 of my original participants had close relatives in India who were described as having mental retardation (in the Western sense of the term). Eighteen of my participants had lived in the United States for at least 7 years, but most of them had been in the United States for at least 2 decades. Seventeen participants were professionally employed and had at least a bachelor's degree. Four of the 17 had graduate degrees. Twelve participants were female, 8 were male.
My primary goal in this part of the study was to answer the question, How do these Indian immigrants think and talk about mental retardation? I have been interested in what Indian immigrants who have and do not have family members labeled with mental retardation have to say. (I use “labeled with mental retardation” to remain consistent with the position in disability studies that mental retardation is a social construct, and that, as such, it is a label that is applied to a person resulting from the interplay between cultural values about ability and the material ways in which a person or groups of people exist in the world.)
This study was designed and conducted using traditional ethnographic methods developed in anthropology (Bernard, 1995; Geertz, 1973) but with an eye to understanding beliefs about disability from the perspective of the individuals being interviewed (Denzin, 1997; Gabel & Vyas, 1999). This contrasts with a more common research strategy in the United States, of asking questions about how people understand Western concepts related to disability. To do this, I had to converse with my participants in their first language (Hindi); therefore, interviews were conducted with the assistance of a translator when necessary. Interviews were structured as follows:
Interview 1 (Picture Prompts)
In Hindi, please describe what you see in the picture.
Interview 2 (Open-Ended Questions)
In Hindi, please tell us what you know about mental retardation. Follow up: Describe someone you have known who had mental retardation. Describe your experiences with that person.
In Hindi, please tell us what you know about learning disability. Follow up: Describe someone you have known who had learning disability. Describe your experiences with that person.
Interview 3 (Taxonomic Trees)
(Interviewer gives the participant several word cards.) Please put the words together that go together. Follow up: Why do these words go together? Why don't these other words belong? How did you decide to group the words together?
In all, my team and I conducted 65 interviews with 20 Indian immigrants over the course of 2 years. I conducted all interviews, and two research assistants participated by taking notes and asking or clarifying some questions. The first, unstructured, interview involved the use of picture prompts (see Anastasia & Vlachou, 1997) to elicit open-ended conversation about mental retardation. Participants were given nine black and white illustrations of people with and without visible characteristics of mental retardation or physical impairment and were asked, in Hindi, “Please describe what you see in this picture.” As anticipated, a question as open-ended as this elicited responses that involved the appearance of the people in the picture, descriptions of their perceived actions, and interpretations of their relationships. These were useful in future interviews.
Follow-up questions were asked when appropriate. For example, if someone referred to an individual in the picture as dimaagi bimaari (dee-MAH-gee bee-MAH-ree), or having a sick brain, the interviewer asked “Why do you say the person has a sick brain?” One middle-age woman had a typical response: “Her brain is sick because she wants bad things. When you want bad things you do things that make you sick. I can see that her brain is sick.” This woman's belief that desire and behavior are interrelated to the brain and illness was common among participants.
In the second, semi-structured, interview participants were asked to talk about their experience with and knowledge of mental retardation. A common Hindi term for mental retardation, mundh buddhi (mund boo-DEE), was used in this interview after analysis of the conversations in the first interview and based on the research team members' experiences in India and with the Hindi language. The choice of mundh buddhi was a critical one because several different terms were used by participants, and the research team had to determine which term was most consistently used to represent what participants seemed to think mental retardation signified. Prior to conducting this interview, we validated our decision with members of the Indian Diaspora living in four countries, including India. The consensus of those with whom we consulted was that we had, indeed, selected the appropriate, and most often used, term to represent mental retardation. One participant, a female, described mental retardation this way, using related terms to make her point: “The people who are dimaagi se kamzori (dee-MAAGI say kam-ZO ree, literally, weak brain), or someone who is thinking and understanding power is less, to that person you will say mundh buddhi.” This participant differentiated between what she seemed to think were types of mental retardation, meaning “they are totally retarded, they have nothing to do with learning or studying. and “learning retarded,” another kind of retardation in her opinion, that “means that they have ability to learn, but they are not learning according to age.” Here, her use of mentally retarded, as opposed to learning retarded, does not necessarily indicate that the two concepts are unrelated nor does it indicate that “learning retarded” is not a form of mundh buddhi. Such complexities illustrate the difficulties in talking about these concepts, even when all participants in the conversation are speaking Hindi.
Another participant, a young mother and professional with an adult sister living in India with her parents who was referred to as mundh buddhi, described her sister this way:
She does not go out. My mother takes care of her, not my father. They do not want others to see my sister because they think it is a shame on the family. They are not ashamed of her but they know others will think them as shameful. She [the sister] does not understand much. She needs a lot of care but she is not physically handicapped. In India, people with the mental retardation stay at home and the mother takes care of them until she is very old. Some day it will be my job and my sister will come to live with my family.
This woman's references to the social life of people labeled with mental retardation in India were echoed by other participants as well, although no participant suggested that people labeled with mental retardation in the United States should stay home and not be seen in public. Her description of her sister's social status is consistent with what other participants and other members of the Indian Diaspora have told me about India. When asked in follow-up whether her sister will be allowed to go out in public here in the United States, this participant said yes.
The third interview involved the use of results from the first two. This interview proved to be the most difficult to conduct but the most fruitful for analysis. Prior to conducting this interview, we created 50 word cards that represented the most commonly used Hindi terms generally related to mental retardation and learning disability in the first and second interviews. According to my participants, all 50 terms are related in some way to mental retardation because most participants did not make clear distinctions between these two categories. The 50 terms consisted of related words representing physical conditions (e.g., handicapped, disabled, without-a-limb), mental or intellectual conditions or states (e.g., crazy, mentally retarded, without-learning, sick mind, bad desires of the heart), and the brain (e.g., brain sick, weak brain). In choosing these 50 terms, I determined the relation to mental retardation based upon participants' responses in the first two interviews rather than based on my own definitions of mental retardation. These word prompts were written onto small cards (one word per card). Figure 2 contains examples of Hindi words.
In the third interview, the cards were randomly provided, a few at a time, to each participant, who was then asked to sort the word cards by clustering together those words that “go together.” The questioning often proceeded like this, in Hindi. A few cards are given and:
Interviewer: “Please put the words together that belong together.”
Participant: “How do you want me to group them?”
Interviewer: “In whatever way you believe they go together.”
Participant: “Is this right?” (grouping the cards.)
Interviewer: “Do you believe those words go together?”
Interviewer: “I would like to learn what you have to say. Please tell me why you put those words together. How do they relate?”
As each new group of cards was given, participants sorted, categorized, and recategorized them and in doing so, built taxonomic trees for which the interviewers were able to elicit their rationale. For example, participants had to decide whether mundh buddhi (literally translated as slow intellect), dimaagi kamzori (weak brain), and dimaagi buddhi (literally translated as sick intellect or mind) went together and why or why not. This interview provided information about the variety of ways in which mental retardation is understood by these participants.
Data analysis continued throughout the period of data collection and beyond. In order to conduct second and third interviews, I had to analyze data from the previous interviews. In the end, transcriptions of all interviews were also analyzed. Transcripts were read and reread to establish themes or patterns in participants' responses. Taxonomic trees from the third interview were compared, and all data were compared demographically by participant gender, education level, and type of schooling in India (British or Indian), years in the United States, work or professional experience, and home of origin in India. I was unable to find significant conceptual discrepancies in responses based in any of the demographic data, with the exception of type of schooling, although there were minor differences in the terms used to describe concepts. These differences, however, did not significantly alter the meaning of the concepts. One participant, who held a master's degree in psychology from a Western university, responded very differently to questions than did all other participants, including the other participants schooled in the West and the participants with disabled relatives or significant experiences with disabled people. This last point was surprising because I expected to find differences based, if nothing else, on time living in the United States, but this was not the case. For example, the transcripts of interviews with a participant who had a doctoral degree from a Western university and had spent 40 years in the United States as an engineer for a major automobile manufacturer differed little in content from the transcripts of a recently widowed elderly émigré, or a middle-age X-ray technician who had lived here 20 years, or from a young couple with children who were recent émigrés. On the matter of contact with disabled people, participants who had direct contact either through relatives or, retrospectively, through social experiences, were able to talk more comfortably about disability, but, generally, they held the same beliefs as other participants.
There are several possible explanations for why these linguistic data are, overall, rather consistent. First, it must be remembered that, with few exceptions, participants were all members of the same Hindu temple. They all lived in similar suburbs in this mid-Western region. Those who worked had similar professional jobs (e.g., engineer, doctor, medical technician, computer scientist, administrator), came from the same general region of India (northern, Hindu-dominant), and considered themselves Hindi bhashi people. This last identity is an important one resulting from the political and social history of late-20th century India. My Hindi bhashi participants held pride in their linguistic and cultural heritage in a similar fashion to the way identity groups in the United States hold pride in their own linguistic traditions. I submit that the apparent persistence of their beliefs about mental retardation is, in part, the result of the homogeneity of the community in which I conducted this research and their strong identification as Hindi bhashi Indians.
The second factor to consider is that this research was conducted through individual interviews rather than in a multicultural context, in which disabled and nondisabled people are interacting and in which the dynamic nature of human discourse might be more readily apparent. Future projects should occur in such contexts, preferably an educational setting, in order to account for the kind of cultural interplay I could not document here.
Cultural Orientations Toward Mental Retardation
Culture, as a concept and conceptual tool, has come under criticism in recent years. Although my primary focus in this project was to contribute to an understanding of the various ways in which mental retardation is interpreted, this also has been a study of culture. In particular, this has been a study of a homogeneous group of South Asian Indian immigrants, members of a single Hindu temple in the mid-West. Through interviews, as opposed to complex cultural interactions, data were gathered. My team and I considered these data as one type of cultural artifact; discourse of a particular kind, if you will, but a discursive artifact uncovered in a particular time and space. Although we verified our findings with Hindu Indians living in other parts of the world, these interviews revealed reproduced meanings within a particular context. The context was somewhat dynamic but nothing like what might have been seen had a study been conducted in a school, where cultural interplays and their resulting tensions could be observed. Again, however, I note that these findings have been validated by Hindu Indians living on three continents around the world.
This reality might bring criticism of the study because I did not explore the permeability of participants' cultural beliefs within the larger sociocultural context of life in America. On the contrary, I argue that these linguistic data are a beginning and are necessary, because without them there would be little information about how to talk about such things with North Indian immigrants. Eisenhart (2001) argued that postmodernism has, unfortunately, made it problematic to do what I have done: use culture as a conceptual tool that distinguishes between home culture, school culture, and so on. She claimed that culture, as I have implied its use in this article, can provide “a way forward, a way to tidy up.” As a conceptual tool, culture can open up possibilities, reveal positions, uncover artifacts, and predict potential tensions. The view of culture that my team and I adhered to for this project is “culture as a way forward,” a path not taken, an unfinished roadmap leading to new possibilities. In this article, I have presented the findings within the framework of culture as a conceptual tool that reveals artifacts and predicts potential tensions. With that in mind, in this section I examine several patterns that emerged indicating the potential tensions between participants' cultural orientations toward disability and the orientations reflected in United States special education practice. Three of the most common beliefs about mental retardation held by participants are discussed next.
Karma and Punarjanam
Most of my participants openly shared their religious beliefs and the conclusions they drew about disability as a result of their Hinduism. This openness about religious beliefs was not immediate, and participants assured me that they would not share such information without being invited to do so; however, upon invitation, participants were quite forthcoming. Their religious beliefs proved to be one of the most significant factors in the way these participants thought and talked about mental retardation. Four of the participants said they were raised Hindu but were not religious Hindus, so their representation of the Hindu perspective, although consistent with their religious counterparts, was one of reporting what they were taught as children rather than what they believed to be true. The first belief, noted above, that disability is a god's gift given as a result of the sins of a past life, reflects the Hindu belief in reincarnation, or rebirth (punarjanam, pronounced poo-nar-jah-nam). Most of my participants believed that mental retardation in the family was a sign that the person labeled with mental retardation or someone in the person's family had lessons from a previous life (karma) that must be learned in the present life. It is believed that having mental retardation or having a loved one considered to have mental retardation would provide opportunities to learn those lessons. An elderly widow, recently emigrated to the United States, struggled in English to say:
Some saint(s) also say, if you do bad things it means you will have to get something in return. If you cannot get the result of your karma in this body, in this period, you will have to rebirth it and face the same bad results of your bad deeds. If your body is mentally retarded that is a god's gift, so you have to suffer it. In last birth you must have done something bad.
This Auntie-ji, as her community members respectfully called her, was adhering to a view of rebirth, sin, and morality that has previously been documented by Sweder (1991), an anthropologist who has conducted extensive research in the Orissa region of southeast India. Sweder wrote: “For Oriyas, there are no accidental, random, or morally insignificant events. Rebirth is a sign of prior sin.… It is a sign of prior sin to be ugly or malformed or disfigured or handicapped” (p. 157). Sweder also recounted the grief of an Oriya widow who explained that her blindness was the result of her past sins. In the following quote, a woman displays her belief that her gender, the birth of a daughter rather than a son, her daughter's death, and her widowhood were the result of her sins in one of her previous lives. She lamented:
I was born a woman. I gave birth to a daughter. My daughter died. My husband died before I did. Suddenly my vision disappeared. Now I am a widow—and blind. … I cannot say which sin I have committed in life, but I am suffering now because I have done something wrong in one of my births. (p. 159)
This widow's belief, that she must suffer because of wrongdoing, is consistent with the second belief of my participants: that one must suffer through the disability without complaint. For participants who expressed this view, suffering does not have the negative connotation it might for those born and raised in the United States. Rather, suffering is thought to be a learning opportunity, something that one welcomes because it brings one a chance to learn lessons that could release one from rebirth. Release from rebirth is the goal of my religious Hindu participants. Achieving release means that one has learned all life's lessons and that one's eternal spirit becomes forever united with the divine essence, or God. Again, I repeat the caution that my findings do not necessarily reflect the beliefs of all Hindus or all Indians; however, there is some evidence to suggest that my results are not atypical of others' results, as indicated by Agrawal (1994), a professor of psychology and education in Amritsar, India. She wrote that there is a “fair degree of fatalism rooted in the philosophy of karma … For a vast majority of people living on the Indian subcontinent, disability thus is irrevocable, since the cause is believed supernatural” (p. 187).
One elderly woman interviewed talked about suffering as an opportunity to willingly fulfill one's duties in life. She said that one must suffer without talking about one's problems. Talking about mental retardation, for example, would be seen as complaining. These participants, and other Indian Americans I have interviewed, believe that this is why I have had difficulty finding parents of disabled children who will talk with me.
An Indian American mother of an adult daughter labeled as having profound mental retardation, and with whom I later spent several days, used the idea of rebirth as a comforting way of thinking about her daughter, the meaning of their relationship, and the purpose of her daughter's condition. “I think she was my mother in a previous life and now she comes back to give to me the problems I gave to her,” Sundar said when I asked for her explanation for her daughter's disability. “If she was not my mother, then she was my sister or brother. She is teaching me the lessons I did not learn in my previous body.” Karma is the Hindu notion of good deeds that reveal lessons learned and that, when completely learned, give release from rebirth. This is the process to which Sundar is referring. In contrast to the Western view of suffering, Sundar and the other participants see suffering as a beneficial thing, an educative experience, something one embraces in order to learn from and to achieve moksha (release from rebirth). In this sense, suffering in any form, is a “god's gift” or an opportunity to be released from rebirth.
In Hindi, the term mental retardation is often translated as mundh buddhi. Across India, there are numerous translations for mental retardation, however. As mentioned in my earlier discussion of the interviews, the participants seemed most comfortable with mundh buddhi, so that is the term we used in our conversations. Although we all used the same term, there was no consistent view of what the term meant among participants. There was even less agreement about its meaning between my participants as a whole and that of my research team. Several meanings for mundh buddhi surfaced in the data analysis; however, three are more prominent and each of them stands in contrast to the view of mental retardation in United States schools. First, many participants literally translated the phrase mundh buddhi and claimed that it meant that a person has bad desires (buddhi) of the heart (mundh). Bad desires means that the person with mundh buddhi has wanted and pursued something that is unhealthy, sinful, or dangerous.
The meaning my participants give to mental retardation that is closest to that held by school personnel in the United States is “slow brain” or “slow intellect.” However, this is deceptively similar. By “slow brain” or “slow intellect,” my participants mean that someone with a slow brain can learn as much as someone else, but it might take longer. In contrast, these participants' views of learning disabilities are significant because they believe learning disabilities are a more serious condition and that they refer to someone who cannot learn at all. (Another purpose of this project was to learn how participants think and talk about learning disability. Although that aspect of the project is not reported here, participants' conceptualization of learning disability is relevant to their discourse on mental retardation. There is no Hindi word for the concept. Therefore, participants literally translated disabled from the Hindi word apung [ah-pung], which means without a limb, and then they conceptualized learning disability to be without learning, a more severe condition than mental retardation.) Within this framework, a learning disability, therefore, would be a less desirable condition than mental retardation and might be the consequences of very bad karma.
Finally, my participants sometimes viewed mental retardation as having a good mind but choosing not to use it. This meaning presents an obvious quandary for United States special educators because it is so distinctly different from the Western view of mental retardation. In the view of my participants, someone labeled with mental retardation is capable of learning the same things at the same rate as do other people but chooses not to do so or is lazy and does not try to do so.
These conflicting, contrasting, and perhaps confusing views of mental retardation provided by participants reflects an Indian phenomenon previously documented by Agrawal (1994) and Sen (1992). Agrawal noted that there is difficulty in determining prevalence statistics for mental retardation in India because those figures “show wide variation from one survey to another, generally as a function of the criteria adopted, the type of investigating team, and the type of population being studied” (p. 185). Sen, an Indian psychologist, attempted an epidemiological study of the incidence rate of mental retardation in rural India and found it difficult to determine for the very reason Agrawal mentioned. Overall, Agrawal and Sen interpreted the difficulties of determining incidence rates as stemming from exactly the same challenges I find in my work: the variation in meaning attributed to the concept of mental retardation among Indian people.
I have found evidence of several potential challenges facing special educators who interact with students and families from South Asia. First, data indicate that there are distinctly different cultural orientations toward mental retardation and that these are likely to result in tensions between practitioners and the South Asian Indian families and students with whom they work. Although my research assistants and I expected differences, and I designed the research anticipating them, I found it challenging to uncover the depth of those differences and was left wondering how practitioners, with all the demands and constraints placed upon them, would do so. Second, I find that cross-cultural communication about mental retardation can be difficult, and sometimes impossible. Consider the example I provided of my difficulty in exploring the meanings of mundh buddhi and mental retardation. Only one participant shared the Western view of mental retardation, as (in general terms) significantly below average intellectual ability that affects one's activities of daily living. Unlike all other participants, this woman had a master's degree in psychology from a British-system university in India. Her education, then, was a Western one. Finally, it is clear that the next step in this research agenda needs to be taken in an educational setting in which the richness of multicultural interaction and the tensions inherent to those interactions can be observed. As the first study in a longer research agenda on South Asian Indian immigrants and disability, this project is limited in three ways: (a) most of these participants are from a single, homogeneous Hindu temple in the mid-West; (b) interviews are only one form of discursive artifact; and (c) there was little social interaction to elicit conversation and observe relationships.
Implications for Special Education Practice
Such markedly different cultural orientations toward mental retardation, and disability in general, indicate numerous implications for practitioners. In the following section I explore two of those implications: conceptual translation and the challenge of uncovering cultural orientations and negotiating the tensions between home and school.
Perhaps most prominent among the challenges facing practitioners is what my team and I have previously identified as the problem of conceptual translation (Gabel, Vyas, & Patel, 1999; Gabel, Vyas, Patel, & Patel, 2001). I borrow the term conceptual translation from three Indian scholars, Srivastava, Tripathi, and Misra (1995), who referred to the concept of intelligence and claimed that in cross-cultural communications, “the question of intelligence involves philosophical questions and [is] not easily comprehensible within [the] framework of pure empiricist approach of the mainstream psychology.;th… concepts are not easily translatable into the prevailing western categories” (p. 36).
My own data empirically support this claim, and once my team and I found this passage, we realized we had an explanation for our dilemma. Indeed, it is difficult to take a Western concept (e.g., mental retardation, intelligence) and attempt to translate it into an Eastern cultural context. Conceptual translation, then, refers to the ability to talk about the same things or ideas while also giving those ideas the same meaning; or it could also refer to the ability to understand the way another person is talking about a thing. A common example is the English word mother. In Spanish it is madre. In Hindi it is mata (mah-tah). In each case, there is a fairly equivalent conceptual translation. All three terms mean about the same thing, though they might be used in slightly different contexts in each culture: a nurturer (typically a female) caring for another person (usually a younger individual, such as a child). Even if I do not speak Hindi, if I am told that mata translates as mother in English, then I probably envision a female nurturer. I have observed this phenomenon over and over as I worked with my participants. Sometimes, as we talked, we were able to understand each other, or conceptually translate, such as when my participants explained the meaning of buddhi (intellect or mind) and its connection to the heart's desires. In English, we often hear the phrase “her heart's desire,” and there is at least a loose connection between desire and the mind that is implied by the use of that phrase. Sometimes, though, we can even speak the same language and are not able to understand what another person is attempting to communicate.
Aside from the intellectual evidence of conceptual translation and its problems, my experience with conceptual translation, or the lack of it, was quite visceral. Although I have studied Hindi and have good listening comprehension of it, my grasp of the nuances of the language is still weak. I had to rely upon my interpreter for assistance during the interviews. Sometimes, this limited my ability to probe with further questions. Sometimes my interpreter's own understandings of mental retardation interfered with her ability to interpret for me. In spite of these limitations, I had more tools at my disposal than do most practitioners who rarely have a Hindi language interpreter to assist them in understanding the cultural orientations of the students and families with whom they work. To further complicate matters, even when conversing in English, my participants and I seemed to be talking a different language. We would use similar words but understand them differently; or we would use different words to talk about the same things, but at the time we would not recognize we were doing this. Sometimes we believed we shared an understanding, but later, data analysis would prove us wrong. Conceptual translation, then, was a major challenge in this project and, I suspect, is an unrecognized challenge in many multicultural interactions in schools.
Practitioners probably find it difficult to know when and how to uncover cultural orientations toward mental retardation. I use cultural orientation to refer to the ways in which my participants approached and viewed the world around them as a result of their experiences and values. Conceptual translation, or the attempt to find out how other people talk and think about a particular thing (in this case, mental retardation), is one way to begin to uncover cultural orientation.
A second implication for special education practice is the need to negotiate the tensions that arise when home and school adhere to different cultural orientations (Harry, Kalyanpur, & Day, 1999; Kalyanpur & Harry, 1999; Lynch & Hanson, 1998). This necessity is evident in the words of Mrs. Kumar, an Indian immigrant who is a bilingual education teacher herself and whose adult daughter is in the transition planning process at a nearby vocational center for students with moderate to severe mental retardation. The following quote reveals poor practice in addition to insensitivity to Mrs. Kumar's cultural orientation toward her daughter.
I went to my daughter's IEP [individual educational planning] meeting but I did not sign the papers. They wanted to give her less speech (services) even though she is not talking now and she needs more help. I asked them why so much less help. They said she is older now and the speech services slow down in transition. I could not sign the papers. They did not ask me what is best for my daughter. They just told me and gave me a pen to sign. I said I needed help from my son. I said he would read the papers to me and I would sign later. They thought I needed help understanding the English but I just did not want to refuse to sign in front of them.
When I asked Mrs. Kumar if she agreed that her daughter needed to be independent, she agreed and went on to say that, yes, her daughter should be independent but that for her family, this means that Mrs. Kumar will take care of her wherever her daughter lives.
Aside from the basic lack of proper protocol in Mrs. Kumar's daughter's IEP, several cultural orientation issues emerged from the interaction between home and school. First, the educators seem to be assuming that the Kumars shared their vision of independence for this young woman and that they would understand the value of it during the transition process. Nor did they agree on the role of the family, particularly the Indian mother, in the transition to adulthood. This school team did not realize the importance of understanding the cultural orientation of the Kumars, who are culturally predisposed to not talking directly about conflict, cannot imagine yielding responsibility for their daughter to people outside their immediate family, and avoid discussing their daughter's condition and their feelings about it as a result of their need to accept “a god's gift” without complaint.
Mrs. Kumar and her husband were more inclined to talk about their daughter and her special needs than were most South Asians with whom I have attempted to establish contact. My interviews have uncovered several possible reasons for the reluctance of many South Asian immigrants to talk about any kind of disability in the family. First, I have discovered an intense desire for privacy. This appears related to several factors: the fear of others in one's community finding out about one's private business, the preference to fulfill one's duty without complaint, the concern that talking about disability might be interpreted as complaining. A Hindu priest even suggested that the reluctance to talk about disability in the family was the result of religious guilt. Although this may not be a representative position of most Indians in the United States, others in the Indian Diaspora with whom I have talked agree with the priest's assessment of the situation. Regardless of the rationale for this reluctance, these data make it clear that the South Asian Indian sensibility favors privacy about disability, particularly mental retardation, and tends to avoid talking about personal matters related to mental retardation unless talking is absolutely necessary, as when seeking medical help or other professional services.
Strategies for Practitioners
What do the results of this project suggest about cross-cultural special education work in general? Are there any tools available to practitioners for understanding and working with families with cultural orientations different from their own? In this section, I suggest three strategies to use when working cross-culturally with families.
The first strategy requires a shift in thought to recognize the socially constructed nature of mental retardation (Ferguson, 1987; Gabel, 1997; Peters, 1993; Priestley, 1998; Shakespeare, 1997; Shakespeare & Watson, 1997; Trent, 1994; Vyas, 1998). Beliefs about and values related to mental retardation vary worldwide (Mazurek & Winzer, 1994; Peters, 1993), and these variations present themselves to special education practitioners more and more often in today's schools. By socially constructed, I mean loosely that the definition and prevalence rates of mental retardation, the socioeconomic and political condition of people labeled with mental retardation, and the extent to which they are valued or devalued vary from culture to culture. As such, the label “mental retardation” is applied differently throughout the world. There is no universal way of understanding, defining, or valuing disabled people based on particular characteristics.
This suggestion presents challenges for practitioners because it implies that they must conform to a cultural relativist stance, one in which all positions in relation to disability are acceptable because, it is assumed, they come from equally valid epistemic stances. For practitioners in United States schools, and as a second strategy, I would argue for a critical relativist approach that accepts the socially constructed nature of mental retardation, but adheres to some basic ethics. In other words, practitioners should recognize and accept that there are distinctly different ways of understanding disability, including mental retardation, and that these differences influence how people live their lives, the decisions they make for themselves and their children, and the outcomes they hope to see. At the same time, practitioners can make decisions about whether families are acting in the best interest of their children, but those decisions should be based in a framework of some kind. This approach accepts that families like the Kumars think differently about transition to adulthood and independence than do most United States educators. In their approach, they make thoughtful decisions that are consistent with their cultural values about who cares for their grown daughter, with whom she lives as an adult, and whether they can sign an agreement to an IEP. We expect parents to make what they consider to be wise, respectful decisions for their children. The Kumars were doing just that when I met them. The critical relativist approach also implies the acceptance of the explanation given by Sundar's mother when she described her daughter as her own mother in a previous life. Rather than viewing this explanation as exotic and unusual, it could be understood as a way of making sense of one's relationship with one's child while also putting that relationship in a historical context of some kind. All parents do this. When talking with families and students, practitioners can consider ways in which family stories and processes have similarity across cultures. This exercise can make the strange seem a little more familiar and can create bridges of understanding between educators and families.
How can these family stories or explanations be uncovered? One of the best tools is the third strategy: conversation. Elicit as much conversation as possible about a student and his or her family. Ask open-ended questions such as, “What can you tell me about your child's educational needs?” “Why do you think he or she struggles with these things?” and “How does your child learn best?” Family responses will serve two purposes. They will provide assessment information as well as cultural orientation information. Another strategy is to ask students to gather the family stories that explain who they are as a family. This kind of activity integrates literacy with cultural study and gives the teacher important information about cultural orientation.
Cultural orientations can pose dilemmas for disabled people, and here is where practitioners need to be prepared to utilize a fourth strategy of sensitively addressing the dilemmas when working with students and their families. I suggest that decisions about what constitutes a dilemma (as evident in cultural tension) involve very basic ethics: whether people are safe from physical, emotional, and mental harm; whether they live dignified lives, respected by those around them; whether they have the resources they need to realize their dreams for themselves. Making decisions about what constitutes a dilemma leads to the next two strategies.
The fifth strategy requires a team effort and is found across the multicultural literature. Practitioners can recruit a group of colleagues in a building or district to form a partnership with community groups that are underrepresented in the multicultural curriculum. Many school communities across the United States have partnerships with representatives of the African American and Hispanic communities. These are important, valuable partnerships, and I do not recommend neglecting them. Rather, add other culture groups to partnership development efforts. Consider the Asian American groups in the community, but remember that Asian Americans differ from group to group (Nakanishik & Nishida, 1995). For example, the specific things I have learned about my South Asian American participants' cultural orientations cannot be generalized to Korean Americans or Japanese Americans (Bacon, 1998; Das Gupta, 1998). Therefore, to build community partnerships with the Asian community, it is wise to build them with communities similar to the ones served.
Finally, develop cross-cultural communication skills (Harry et al., 1999; Kalyanpur & Harry, 1999; Lynch & Hanson, 1998). One of the best skills to have is to never assume anything about cross-cultural beliefs until they are learned first hand. In other words, do not assume to know what another person in a cross-cultural interaction believes or thinks unless learned directly from that person. My own research experience is a good example of this. If I had assumed my participants and I agreed on the meaning of mental retardation (or mundh buddhi) when we talked, I would have made some erroneous decisions and arrived at some faulty conclusions. Although I know that many Indians use the term mundh buddhi to represent their concept of mental retardation, I also know that there are numerous ways of conceptualizing mundh buddhi among Indian people. Therefore, I cannot assume that the next Indian family I meet will think about mundh buddhi in the same way that I understand it.
One way to improve cross-cultural communication is to use culture interpreters. Think of these individuals much like language interpreters, as people who can create bridges of understanding between school and home culture. These individuals do not necessarily have to speak the home language of an immigrant family, but they must have enough of a basic understanding of the home culture to help the school understand that home culture and to help the family understand school culture, policies, and practices.
Reconsidering the story of Lia and her family's confrontation with the medical establishment, how might Lia's story been different if her doctors had recognized the serious cultural disconnections in the situation? Perhaps they could have assumed that even epilepsy, a condition that seems so innate, might be culturally constructed and that there might be problems of conceptual translation during their conversations with Lia's family. Perhaps they could have asked questions of the family to find out how they understood Lia's condition. Then, they could have sought the assistance of a Hmong culture member to help explain the differences between Hmong and Western notions about Lia's condition. With such communication they might have gained the cooperation of Lia's family, who might have agreed to use Western medicine in combination with Hmong remedies. We cannot know for sure, but it would have been worth the effort because the things they tried failed and Lia died.
What about the stand-off between the Kumars and their daughter's school? Certainly, the school could have asked the Kumars to invite an interpreter or mediator to the meeting. Schools usually think of language interpreters, but perhaps a culture interpreter could have worked in this situation. Instead of telling the Kumars what would be written into their daughter's IEP, the school personnel could have asked questions about what the Kumars envisioned for their daughter. This is good practice regardless of whether there are cultural differences. Instead of assuming both sides shared the same idea about “independence,” a culture interpreter could have asked questions that would reveal the depth of the differences. When the Kumars took their daughter's IEP home with the pretense of getting someone to translate it, the school should have immediately recognized resistance and called on someone who could intervene in a culturally sensitive way.
Further inquiry in the context of schools is needed to understand more fully the interplay between Indian and United States culture and even more specific ways in which practitioners can mediate between these worlds. I am a little more confident that I now can hold conversations about mundh buddhi with North Indian Hindi bhashi individuals. I have some clarity about the relationships between concepts related to mental retardation (e.g., dimaagi bimari, dimaagi kamzori, karma, punarjanam, desires of the heart, and mundh buddhi) and that clarity can assist in using conversation to uncover cultural orientation. Furthermore, I am beginning to understand what one participant, a Hindu elder, described as the circular pattern of Indian thought; a way of thinking about all things as connected. In our first interview, he drew a large circle in the air with his hands and said that Indians see everything as connected: the living and nonliving worlds; people and animals; thought, being, and doing; past, present, and future. “Someone has disability in this life because of something from a past life,” he said, “and someone will have disability in a future life because of something in this life. It is very simple.”
This research was funded by a faculty research grant from the Office of the Vice President at The University of Michigan, Ann Arbor. Since ending the study reported here, all members of the research team have moved on to other universities, leaving me to author this article alone. I thank my research assistants, Siddhi Vyas, Hetal Patel, and Swapnil Patel, for their contributions to this project.
Author: Susan Gabel, PhD, Associate Professor, National College of Education, National-Louis University, Evanston Campus, 2840 Sheridan Rd., Evanston, IL 60201. Sgabel@nl.edu