*CHP Archives: MULTICULTURALISM AND DISABILITY: A COLLECTION OF RESOURCES AND ISSUES

This page is adapted from the information packet:

MULTICULTURALISM AND DISABILITY:
A COLLECTION OF RESOURCES AND ISSUES

by Susan O’Connor
Center on Human Policy

See also our Links to Other Information on Multiculturalism and Disability Culture

NOTE: This information package was developed in 1993. Although it has not been updated, it contains information that may continue to be extremely useful to people who are concerned about supports and services for people with disabilities.

CONTENTS

  • OVERVIEW ARTICLE – Including Disability within the Multicultural Dialogue
  • ANNOTATED BIBLIOGRAPHY – Books, articles, organizations and other resources related to multiculturalism and disability

Preparation of this article was supported in part by the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), under Cooperative Agreement No. H133B00003-90, awarded to the Center on Human Policy, School of Education, Syracuse University. The opinions expressed herein are those solely of the author and do not necessarily reflect the position of the U.S. Department of Education; therefore, no official endorsement should be inferred.


DISABILITY AND THE MULTICULTURAL DIALOGUE

by Susan O’Connor
Center on Human Policy
Syracuse University

June, 1993

As demographics rapidly change in this country (Banks, 1991; Isaacs & Benjamin, 1991; Yates, 1988) it is projected that by the turn of the century one in every four Americans will be a person of color (The Commission of Minority Participation in Education and American Life, 1988). In addition, child poverty rates have increased for every racial and ethnic group since 1979 (Children’s Defense Fund, 1991b). According to a report on child poverty in American (Children’s Defense Fund, 1991a), two in three poor children are white, Latino, Asian or American Indian. The other one-third are African American and though an African American child is more likely to be poor, African Americans make up only a minority of poor children. During the 1980s, Latino poverty rates grew the fastest. Very young children make up a sizeable portion of children living in poverty and lack of health and resources impose many risks.

For families and children from groups thought to be outside of the mainstream and in need of additional services such as therapy, case management, etc., support is offered by a system based on white middle class values and beliefs which often do not take into account the differences people have based on ethnicity, class, race, and disability. It is clear that the challenges that face the diversity of this nation are increasing.

In attempts to challenge and understand this diversity and what it means in our lives, there is an increasing re-emergence and discussion, around terms such diversity, cultural pluralism, and multiculturalism. Questions related to what people, especially people being described as having minority* status, have experienced in this society are being asked more frequently. The responses to these questions bring up once more the need to more fully address the kinds of oppression (racism, sexism, handicapism, classism, etc.) that are at work in maintaining the status quo and giving privilege to one group over another. Multiculturalism, diversity, and cultural pluralism are being looked at more frequently across a wide variety of disciplines including the area of special education and disability studies. Though there are variations in how each term is defined and interpreted, each has a role in expanding our discussions and hopefully our actions toward challenging the important issues of prejudice, discrimination and exclusion that exist for many people, and specifically their relationship to people with disabilities, their families, and the professional community.

(FOOTNOTE: *As used here, “minority” refers to a power or dominance relationship. Groups who have unequal access to power and are considered in some way unworthy of equally sharing power, are stigmatized in terms of assumed inferior traits or characteristics (Mindel, Habenstein, & Wright, 1986, p. 8). The word itself is inadequate as many of the groups that truly are a minority in this culture (Swedish American, Dutch American, etc.) are not called such. Thus the term minority has been used within the context of power relationships and is used here because it is commonly understood what is meant.)

This article discusses the term culture and looks specifically at how it relates to what is referred to as the dominant culture. It will also look at the role multiculturalism plays in understanding the concept of culture and will suggest that by looking more closely at our own cultural identities, we expand our understanding of what happens to people in our society who are outside of the dominant culture. The concepts of assimilation and the melting pot theory are also discussed. The final section focuses on the area of disability and how the experience of disability and handicapism can be understood within a multicultural context. This raises questions related to the underlying social movements in the field of disabilities such as normalization and community integration. Finally, an annotated bibliography listing resources that can assist in informing the reader about the issues as they relate to multiculturalism and disability is presented.

What is Culture?

Simply defining the word culture is not an easy task. We all have our own conceptions of what culture is (though it has often been interpreted as something that others have) and the term has long been defined by anthropologists and others in a variety of ways. Before the late 1950s it was defined in terms of patterns of behavior and customs (Sleeter, 1990). Goodenough (1987) defines culture as a way of perceiving, believing, evaluating and behaving. Spradley and McCurdy focus on “the acquired knowledge that people use to interpret experience and to generate social behavior.” (1975, p.5) It has also been described as the ever-changing values, traditions, social and political relationships, and a worldview shared by a group of people bound together by a number of factors that can include a common history, geographic location, language, social class, and/or religion (Nieto, 1992). Cultural development some argue, is never static but evolving (Bullivant, 1989).

According to Dirlik, culture affords us ways of seeing the world. He also says that if that definition has any bearing on efforts toward changing the world it is essential that we confront our ways of seeing (Dirlik, 1987, p. 13).

The word culture then is one that brings with it a number of interpretations and is no longer being seen narrowly (Gollnick & Chinn, 1990). In this sense, culture is more than a singular experience (i.e., ethnicity) but rather the outcome of a number of key elements (race, ethnicity, gender, disability, etc.) that are pertinent to an individual’s identity. Culture can be viewed as something very personal as well as something more pervasive that effects entire groups. Much of this way of understanding culture arises in the renewal of interest in concepts such as cultural pluralism, cultural diversity, and multiculturalism.

Cultural Pluralism, Multiculturalism, and Diversity

Many words are used to discuss issues related to people’s identities and the experiences that they incur because they are from a particular group deemed to be in the minority. One such term is cultural pluralism first coined in 1915 by Horace Kallen in response to the prominent idea of all ethnic groups needing to melt together (Gollnick & Chin, 1990).

Cultural pluralism is defined as a concept of an ideal multiethnic society in which various ethnic groups would have mutual respect for each other, enjoy equal rights, and be able to preserve and foster their cultural traditions (Suzuki, 1984, p. 299). However, according to Suzuki, this implies that a person’s ethnicity plays the central role in determining his/her relationship to the dominant culture and assumes that the ism’s (racism, sexism, classism, handicapism) will disappear if we simply learn to live harmoniously with each other. The concept of cultural pluralism, and a singular focus on ethnicity does, according to Newman, acknowledge the other forces that impact on an individual or a group, such as society’s social structure (Suzuki, 1984). It instead looks at only one salient aspect of that person’s experience whereas a number of other elements (gender, race, class, age, disability, to name a few) might add significantly to the experiences the person has. This can lead to the belief that ethnicity is the one static factor that determines a person’s values and belief system.

Emerging from the concept of cultural pluralism as early as the 1920s was the concept of multiculturalism which has changed over the years. As part of the civil rights movement a variety of groups (women, people with disabilities, the aged) that have suffered from institutionalized discrimination brought their needs to a public forum and over this time the concept of multiculturalism broadened to include gender, race, and class (Banks & Banks 1989; Gollnick & Chin, 1990; Marable, 1992). Increasingly, attempting to at least take into account any one or a combination of each of these facets, often called microcultures, has been labelled multiculturalism (Banks & Banks, 1989; Bullivant, 1989; Gollnick & Chinn, 1990) or cultural diversity (Lynch & Hanson, 1992). It becomes a question of looking at the diversity that is a part of all of our lives. According to Nieto, “culture and cultural diversity are at the core of multiculturalism” (Nieto, 1992, p. 298).

The idea of shared knowledge and beliefs in shaping human perception adhered to more recently, is more attuned to the concept of multiculturalism. In this case, multiple standards for perceiving, believing, doing and evaluating are allowed for (Sleeter, 1990, p. 81).

In addition, it is important to acknowledge that the institutionalized forces of exclusion such as racism, sexism, and handicapism work to divide. Yet it is only by understanding the similarities that run across each of these isms that we can understand the institutionalized nature of the problem not only for people with disabilities but for all of us. For example, does the fact that a person is a woman or that she has a disability impact more on the discriminations she encounters, or is it that each factor has a strong impact in defining that person and determining his/her roles?

Accordingly, within each person and within a given culture it is essential that each person cope with these different roles. Brislin (1976) suggests the way we do so is to rank each role in terms of its importance to our own identity, acknowledging also that those identities are always changing. Since the roles we value most highly define our “primary” identities which we have either learned since childhood or been converted to as adults, all interpersonal role relationships are to some extent multicultural. It must be understood, however, that all people within a given microculture do not necessarily share all of the same values (i.e., all women, all African Americans, all people with disabilities).

Suzuki (1984) discusses superficial ways that cultural diversity and multiculturalism have been interpreted such as highlighting ethnic foods, holidays and costumes. This simple interpretation, he says, contributes little to solve the problems that face schools in a multicultural society. According to many, multiculturalism must also address the social and political issues for real change to occur (Nieto, 1992; Sleeter, 1990).

Multiculturalists believe that information and knowledge are not neutral, but reflect the interests of people in control of decision making. A multicultural perspective then shifts the emphasis from Eurocentric norms of measuring people to one of multiple perspectives (Hidalgo & Almeida, 1991). In understanding this, it is important to look at what has been called the dominant culture.

The Dominant Culture

A question that has arisen frequently is, who, aside from those we think of as white middle class, are of the dominant culture? Using the framework presented by Gollnick and Chinn (1990), this can be understood by more closely looking at those important aspects that make up our lives and define how we are viewed and in turn interact in the world.

We live in a country that holds a certain set of values and standards which impact on all of those elements. Values such as competition (Kohn, 1986), individualism (Bellah, Madsen, Sullivan, Swidler, & Tipton, 1985) freedom, defined as being left alone by others (Gollnick & Chinn, 1990), and work ethic, play a key role in defining the norms of the dominant culture. Individuals within the culture have differing degrees of power which can be seen if we look at who holds the balance of power of financial resources, top positions in mass media, schools, universities, and government (Banks, 1991).

Within these areas (race, gender, disability, class, etc.) individuals may be part of the dominant group at times and not so at other times. For example, if we look at gender, men would be dominant. If we look at the intersection of gender and race it would be white men, yet this is not to say that all white men have more power. Additional elements such as whether a white male has a disability may be a factor, or whether he is a “lower class” white male. This is true for each aspect of our identities. In this sense we may all be part of the dominant culture to some degree and at different points in our lives. A power differential is the essential element that determines what we will have access to within the dominant culture. According to Giroux (1988), it is the differing power relationships that have the greatest impact on groups and individuals in achieving and defining their goals.

A key to understanding this framework and how we all interact with the dominant culture is through a better understanding of our own identities. Edson (1989) believes that we should not seek merely to expand our awareness of other cultures or microcultures to understand the complexities of multiculturalism as the focus remains on the other (p. 9). If we focus on others we fail to examine ourselves and our own backgrounds and assumptions both personally and professionally. The institutionalized assumptions of the dominant culture limit our ability to learn, understand, and accept each other. According to Edson (1989), without critically analyzing the institutionalized beliefs of the dominant culture, which affect us all both consciously and unconsciously, we will inadequately address issues of multiculturalism so important today.

Another important aspect in understanding what dominates is to ask what assumptions about culture become institutionalized and what values and beliefs determine who is valuable, who is powerful, and what rules will be enforced. If someone is not viewed as meeting the standards of the dominant culture, and are in some way involved in receiving services, s/he is often given “help” in ways that will make that person “fit in.” This has been the case for a number of groups in this culture and has certainly been true in the area of disability.

If we approach understanding differences (whatever they might be) from this perspective with the assumption that by understanding “their” values, traditions, and beliefs we (the dominant culture) will be able to better understand and serve “them” and create a level of understanding and tolerance (Baxter, Poonia, Ward, & Nadirshaw, 1990). We do little more than look at the cultural “nuances” in order to make people fit into the dominant culture. Simple understanding and tolerance does little to address the underlying and institutionalized forces such as racism, sexism, handicapism, and classism that exist and continue to keep discriminatory attitudes and beliefs in place.

Essentially through understanding cultural “nuances” we learn what it is we want to change to make people fit in, to fix those differences that are viewed as being outside of the norm, and cultural behaviors and beliefs that are interpreted as dysfunctions to be overcome (Cross, Bazron, Dennis, & Isaacs, 1989). This approach essentially focuses on aspects of deviance (Nieto, 1992) rather than acceptance and does little to challenge issues of power and control. Such attitudes remain consistent with the melting pot and assimilationist theories that have predominated in this country for years.

Assimilation

Many people in this country have accepted, whether consciously or unconsciously, the notion of assimilation or the idea of a melting pot in which we will all merge becoming one homogeneous country with a universal set of standards and beliefs. This concept has prevailed since white European groups immigrated to America. The view of assimilation and people fusing together has often led to the notion of color blindness (Isaacs & Benjamin, 1991). This essentially means that we are all the same and that a person’s color (or disability, or gender etc.) has nothing to do with how s/he will or will not be seen and accepted. Carol Gill (Johnson, 1987) says in response to the idea of ignoring a physical disability,

…Disabilities themselves cause problems, and those physical problems, too, form who we are. I don’t like the idea of ignoring that. That’s also a potent force in our development. No matter what your disability is, it has an impact on you. To say you’re just like everyone else–except you accidentally have this little difference is really to deny your experience. And I don’t think denying your experience can ever lead to good judgement.

In essence, people denying their race, gender, disability or whatever trait is significant to them, as though it didn’t exist, or teachers and professionals saying, “I don’t see their color or disability,” only further contributes to denying who that person is.

The idea of who can become part of the dominant culture has a deep historical context that calls into question who is acceptable to assimilate. In understanding this, it is important to take a brief historical look at how cultural diversity has been viewed over time and some of the reasons why assimilation was never possible.

Early on, Social Darwinism opposed cultural diversity, militantly limiting how people of the dominant culture knew and understood people who were different from themselves. They cautioned that we should not interfere with the evolutionary forces that attempt to make universal what was attainable by only a few; consequently, we should not try to assimilate people considered incapable of survival and who might contaminate the stock of intelligent individuals considered important to civilization (typically northern Europeans) (Edson, 1989). Terms like “childlike” and “uncivilized” were labels applied to Blacks, immigrants, and people with special needs (p. 5).

Edson presents three main issues that have constructed barriers to multiculturalism. They are: race and slavery, ethnicity and immigration, and eugenics and intelligence.

Race and Slavery. This was interpreted by many as bringing “civilization” to Blacks, a view that was widely accepted among early twentieth century white Americans. Early in the century (not unlike today) race was viewed as a national problem as Blacks moved to the north, and the portrayal of them as uncivilized, lustful, and superstitious remained. Some argue these attitudes remain today as the portrayal of African Americans in the mass media, and this portrayal has changed little (hooks, 1992). Because theories of evolution explained things in a so-called “scientific” manner they were widely accepted (Gould, 1981). Beliefs and assumptions about Blacks, as well as other groups seen to be “deviant,” became institutionalized, which justified treating them differently.

Ethnicity and Immigration. During the early part of the century, there was also an influx of immigrants coming to this country. As evolution was accepted as an explanation for the racial problems that existed it also served to define ethnic problems. Immigrants were said to be uncivilized and docile and considered to be of inferior stock. Along with this migration came industrialization and urbanization, which led to a growing number of social problems which included urban ghettos, increased crime labor conflicts, and growing discontent among the working class poor (Handlin, 1951). This flood of immigrants was viewed with great alarm by the dominant culture described as White, Anglo-Saxon Protestants (WASPS) (Suzuki, 1984). This gave rise to the concept of assimilation, and the notion of implanting immigrant children with the Anglo sense of righteousness. Making them like “us” would work to make the society a better place and create in a sense a homeostatic harmony and a melting pot.

Intelligence and Eugenics. By the 1920s the evolution ideas were becoming less popular, but deep-seated effects remained and gave rise to the new “sciences” of Intelligence Testing and Eugenics which was based on the belief that “science” could ameliorate and control the evolutionary process and preserve and possibly perfect “civilization.” This was a time of human engineering and some advocated that those found to be “mentally defective” be sterilized so as not to reproduce (Edson, 1989). Intelligence, then, was equated with social character. Poverty and social conditions were not looked at as explanations for why some people could not rise above their conditions; instead, character faults and lack of intelligence were promoted as reasons why some people were in certain situations. Science was seen to be value-free (Patton, 1990) and the opinions of those considered to be the experts were taken as truth, giving rise to professionalism and the status of the expert (Bledstein, 1976). The patterns of devaluation for a number of people in our society (African Americans, Latinos, American Indians, women, people with disabilities, etc.) can be easily traced and continue to contribute to many of our beliefs and attitudes toward people who are not considered as part of the dominant culture.

The public schools played a major role in promoting assimilation through the imposition of a strong Anglocentric curriculum which often punished children for using their mother tongue and devalued cultural traditions and values of any given culture outside of the dominant one. One striking example is what happened to American Indian children who were taken from the reservations and placed in governmental schools in an effort to replace Indian culture with Anglo American culture. One of the most notable aspects was the removal of Indian girls from tribal homes in an effort to make them into a government version of the ideal American woman (Trennert, 1990). In addition laws were created in 1887 prohibiting American Indians from speaking their native languages in schools (Duchene, 1988).

As early as 1964 it was argued that there was no evidence showing the melting pot ideology worked (Gordon, 1964). As Trennert (1990) points out, racial beliefs worked to hinder the success of assimilation, and despite the fact that the schools were trying to convince Indian girls of their equality, the overriding racist belief in the inferiority of the Indian seldom led a successful graduate to be integrated or accepted in the job market. We continue, however, to base our educational institutions, programs, services, and expectations on such a theory.

Until the 1960s, many social scientists viewed racial minorities as merely the last groups to migrate to the cities and predicted that it was only a matter of time before they too would assimilate and gain upward mobility (Blauner, 1972; Suzuki, 1984). Yet as Harry (1992) argues, there is a grave distinction related to who can actually assimilate. In this country today there is a resurgence of new immigrants, yet the difference for many of these immigrants is that many are from non-European countries, and their skin color alone sets up obstacles to integration. Harry (1992b) brings up the difficulties in assimilating when skin color is the bias and prejudices remain around issues of race.

Today, the need to understand that knowledge is a social construct and that it reflects the experiences, values, and perspectives of people and their cultures is critical (Banks, 1991, p. 34). The challenges it provides are being embraced in a multitude of areas including the area of disability.

Multiculturalism and Disability

Understanding disability within the context of issues related to diversity and minority status is not new. In their chapter on “The Disabled Minority,” Biklen and Knoll (1987) discuss the discrimination and stereotypes that are faced by people with disabilities simply because of that disability. Drawing analogies to other groups facing institutionalized discrimination, Bogdan and Biklen (1977) coined the term handicapism and drew parallels to it and racism and sexism. They relate how prejudice, stereotypes, and discrimination are an inherent part of handicapism and the policies and institutionalized discrimination that keep handicapism in place.

This analysis laid the groundwork which likened disability to the larger societal discriminations that exist. It is important, especially now with the popular interest in cultural diversity and multiculturalism, to continue to link these dialogues. It is equally important to acknowledge that people with disabilities are multi-faceted individuals whose life circumstances are made up of a variety of experiences. It is important to understand people with disabilities in light of all of the forces that impact on their lives. Looking only at disability limits a person’s identity and does little to help us understand how a person’s ethnicity, gender, class, sexual preference, and religion play a role in their identity.

Double Discrimination

In our society people who are poor, of minority status, and labelled as having a disability are often at a disadvantage in schools and within the service system (Harry, 1992b; Smart & Smart, 1992). In discussing the effects of each of these, Herman (1983) suggests that when these elements intersect, families and people with disabilities are more vulnerable to discrimination. In addition people viewed as having a minority status tend to have a higher likelihood to be poorer and unemployed; thus, individuals from minority groups who have disabilities tend to earn less when they are employed than their white counterparts with disabilities. Another factor to consider is the higher risk for minorities of becoming disabled (Parrino, 1992). This is often related to issues of poverty as well as discrimination of services that exist. In school settings, for example, minority children are at risk because they are being asked to master two cultures. Ironically, the expansion of the civil rights movement of the 1960s brought additional special education services where large numbers of “culturally different” children were labelled retarded and inappropriately classified because of assessment bias and language differences, classroom practices, racial and cultural prejudices and cultural incongruity in instruction and curriculum (Harry, 1992a).

In a hierarchy of “handicaps” within our society, is being Black more visible or devalued? Carter suggests (1986) that the story of Black mental health consumers is one of being in “double jeopardy” because of the negative feelings towards Blacks and people who are labeled mentally ill. With descriptors such as Black, Latino, American Indian and disability or being a woman with a disability and often poor, the question “what is primary” to that person and their identity must be raised. Many of these people are dually devalued in our society. The inter-relationship between the areas of race and disability, gender and disability (Traustadottir, 1990), and class and disability (Golden, 1987) are research areas that remain virtually untouched but are critical areas whose impact needs to be more clearly understood. As individuals gain knowledge of themselves as being made up of many experiences, it is critical that the field of disability studies begin revisit the principles that drive it.

Community Integration and Normalizatio

There have been many changes in the field of disabilities over the past 25 years. The deinstitutionalization movement placed people in the community, but it has done little to acknowledge the individual identities of those people or their families. The movement toward community integration has only begun to look at what living as a valued member of a community means for a person with a disability. These questions must further our understanding of people not only in relation to their disability but also in relation to the many other aspects that make up who they are. All are important elements of a person’s identity and impact greatly on where s/he will choose to live, who s/he will choose as friends and all of the decisions that person will make about his or her life. As we begin to look more closely at what it means to be included or integrated into a community for people with disabilities, we must understand more clearly what makes up an individual’s life. For example, a Latino person may want to continue living in his or her neighborhood around people that s/he knows and speak the same language rather than move to a neighborhood simply because the system feels it is better or safer. People labelled as having a disability essentially were (and in many cases still are) defined almost entirely by their disability. They were not described as a young/old man or woman who is African American, Latino, American Indian, or European American, or as a person who adheres strongly to the values, traditions, and beliefs of their culture. We knew only that they had a disability and knew/know well all of the clinical nuances that were attributed to that disability. A designation of having a behavioral problem often is more of a determinant as to where a person might live, go to school, or work more fully than any of the personal aspects of that person’s life. This was especially true for people labelled with mental retardation or with mental illness labels (Doe, 1992).

Much of what drove the community integration movement were the principle of normalization, often referred to as social role valorization (Wolfensberger, 1983), which are being questioned in light of cultural diversity (Baxter, Poonia, Ward, & Nadirshaw, 1990). These principles, are based on the belief that people with disabilities should be socially accepted and valued, and made assumptions about what is considered to be “normal or “valued” in our society. Baxter et al., ask two questions: 1. What are the norms which our society takes for granted? 2. What kind of values should be involved in deciding the policy and practice? They go on to offer some comparisons as to how something offered in one culture as a norm is not in another. In the traditional Program Analysis of Service Systems (PASS) evaluation, a rating guide such as “deviant staff juxtapositions” suggests that because Black and ethnic minority people have low social status their employment in services for people with learning difficulties** should be avoided because their presence may further devalue those receiving services.

(FOOTNOTE: In Britain, people with mental retardation are referred to as having learning difficulties.)

Another example of this is moving away from home upon adulthood. Though this is the cultural norm in white, middle-class America, it is not the case in many cultures. It should not be taken for granted that because someone has reached a certain age it is time to leave home. In general, services and support systems offered to individuals and families are based on standards and norms of the dominant culture and an assimilationist perspective.

Culture and Services

Though there are many aspects that shape a person, ethnicity has a major influence on how a child understands him/herself. Often it is the cultural patterns that a child learns from his/her family that form his/her view of many things including disability. Isaacs and Benjamin (1991) discuss the relationship of ethnicity and mental health, and much of what they say holds true for the messages children get as they learn to accept or reject a disability. How does a child’s culture view the disability, how do they cope with anxiety, depression, fear, anger, and to whom do they turn to seek help; is it extended family or family elders, religious personnel, native healers, or the service system? How disability is constructed within a specific culture plays a key role in understanding the meaning of disability for that person or family.

The cultural context within which disability is perceived is important in knowing the kinds of services to be provided to families and people with disabilities. To one family who may see their child who is labelled playing outside with the neighborhood children after returning home from a segregated special education class, the understanding of the constraints placed upon the child because of his/her label may have little significance until they interact with the service system (O’Connor, 1992). This brings up the question of how a label is defined and to whom is it important. What is imposed on a family or person may be treated very differently within their cultural context. This is not only true in relation to labels but also in relation to childrearing practices within a family.

Kalyanpur and Rao (1991) point out that one African-American mother talked about sending her child to her mother in the south when she felt she needed a break. What she perceived as good parenting and love, workers entering her home saw as her inability to care for her children.

How are services made accessible to people of ethnic groups outside of the dominant culture? When the perceived difference is seen as a deficit that needs to be worked on, people often experience a cadre of workers involved in their lives and a new specialist for each difference that is identified. A number of additional conflicts emerge when services are provided based on values of the dominant culture. Often support agencies are located outside of a community and transportation becomes a problem (O’Connor, 1993). This, in addition to a lack of trust in the system outside of their culture often leads to people being labelled as unconcerned or uncaring about their children (Harry, 1992b). It is clear that to some families the issue of disability is secondary to health issues, or day to day getting by based on the overall needs of the family or person (O’Connor, in press).

All people and families have their own way of perceiving problems and solutions, strategies for dealing with problems and choices of ways to solve them, yet services provided within the dominant culture have done little to understand, respect, and listen to what people considered to be outside of the mainstream are saying. We must also recognize that all Black (whether African American or Caribbean American), Latino, Asian, and American Indian people in this country are not homogeneous and monolithic but varied and complex (Billingsley, 1987). It is the challenge of understanding the meaning of the differences that we all bring to situations that will result in the strengths we need to build a more multicultural society.

Conclusion

We are moving quickly, and in many ways painfully, into the next century. Before us lie many challenges and choices that people with disabilities, families, and professionals must make. Do we want to move forward with one group leading the other, or as partners? Who today do we need to listen to? History has shown us that we have done much damage to a great number of people. Our challenge is the future and how can we learn to listen, to respect, and work together with people who have not been listened to in the past. It is the very people who have been excluded for so long who are best equipped to offer us insight into how we must move forward in partnerships. Our solutions may not be so much in leaders but in partners. The strengths related to who a person is because of his/her cultural, family, religious affiliation, and gender identity is what we must learn to understand. We must begin by shifting our focus from one of deviancy and fixing to one of acceptance and respect, and offering a forum to those people and families who have been silenced for so long.

he Importance of Language

Language is something that is always changing, and that change is often associated with political response which is an indicator and expression of what people are saying about themselves. Nieto, for example, points out the change from Negro to Black to Afro-American to African American. The term African American versus Black describes a cultural base rather than only color or racial differences (Nieto, 1992, p. 14). In the same way, the fact that the phrase “persons with disabilities” has become widely used, indicating that we are talking first about the person not just using an adjective that negatively defines that person.

One of the dilemmas when writing about and describing people is that they themselves might still describe who they are by a label deemed to be politically outdated. At the same time, not all people from a broad group will use the same terms to describe themselves. It is important, according to Nieto, to be aware of two things when choosing terms:

1. What do the people in question want to be called?
2. What is the most precise term?

For example, in writing about a program serving American Indians in South Dakota, I used the term Indian as it was what the people I talked to choose to be called. Similar discussions are true for the terms Hispanics, Chicanos, and Latinos. In addition, the term European American is becoming more widely used as a way of implying culture and generally a set of values and behaviors rooted in a western European tradition. Again, this is not to say that all European Americans, African Americans, American Indians or any of the other ethnic groups that inhabit this country, all have the same values or beliefs, but to identify different groups within a wide category that reflects some of the similarities they experience within society. It is difficult to capture all about a person through language but it is important when describing people to be aware of the language we use even though it changes and unfolds as rapidly as does the subject matter discussed.

Often terms do not, according to Peters (1986), come from the community itself but rather are imposed from outside, or are definitions from social service systems or medical professionals. She suggests that words like physically challenged, handicapable, and handicapper are imposed and that maybe the reason there is not a language that feels right is because there is not yet a movement that feels right (p. 22).

As language develops there is no agreement on which terms are offensive, no one term universally accepted. Some believe there are larger issues to overcome and still others that language roots perceptions and they are willing to go to great lengths to work toward more positive language (The Disability Rag, 1990). Language evolves as our understandings evolve and it becomes a political as well as a personal tool to help both groups of people and individuals represent themselves instead of continuing to be interpreted by others.

REFERENCES

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