Presented at the 1992 National Conference of the
American Society for Anthropology in Oceania
Authors:
Yoichi K. Rengiil, University of Guam
Jane E. Jarrow, Disability Access Information and Support

In a society in which so much of the culture is embodied in language, it is appropriate to include a study of language usage regarding persons with disabilities in any review of the issues of disability within Micronesia. This paper will (primarily) review the terminology employed in the Republic of Palau to refer to persons with disabilities and discuss the cultural and conceptual meanings behind the literal translations of these terms. At the same time, however, it is important to distinguish between how people are perceived and how they are treated. Personal experience and oral testimony regarding persons with disabilities in the Republic of Palau will be used to re-frame this discussion from theory to reality.

It is important to begin by reviewing the definition of terminology suggested by the World Health Organization (WHO) and offered by the organizers of this session as "common ground" for our discussion:

"Impairment: Any loss or abnormality of psychological, physiological, or anatomical structure or function.

"Disability: Any restriction or lack (resulting from an impairment) of an ability to perform an activity in the manner or within the range considered normal for a human being.

"Handicap: A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual.

"Rehabilitation: a goal-oriented and time-limited process aimed at enabling an impaired person to reach an optimum mental, physical and/or social functioning level, thus providing her or him with the tools to change her or his own life. It can involve measures intended to compensate for a loss of function or a functional limitation (for example by technical aids) and other measures intended to facilitate social adjustment or readjustment.

"Equalization of opportunities: the process through which the general system of society, such as the physical and cultural environment, housing and transportation, social and health services, educational and work opportunities, cultural and social life, including sports and recreational facilities, are made accessible to all." (WHO, 1980)

The authors of this paper come to this discussion with more information about the disability community than about the cross-cultural study of societies, norms, attitudes, and sociological phenomena. We believe it is important to share our knowledge of disability as considered in Western (predominantly U.S.) philosophy and practice so that the conclusions that emanate from this "meeting of the minds" will be understood in the context in which they were intended by those who are not privy to our current and future discussions. Before we begin to relate disability terminology as used in Micronesia, it seems important to clarify the appropriate use of existing (Western) terminology.

As will be detailed below, the distinction made by the World Health Organization between "disability" and "handicap" appears to be a very functional distinction (conceptually) in our current discussion of attitudes and practices in Micronesia. Note, however, that within the United States today there is a strong move to eliminate the use of the word "handicap" entirely. The reason for this trend is logical if one accepts, in any part, the Whorf-Sapir hypothesis that our language shapes our reality. Inherent in the term "handicap" is the idea of stigma and of some level of segregation from "normal" society. In contrast, the term "disability" reflects a statement of fact – the existence of a restriction or lack of ability. Current (U.S.) philosophy as put forward by disability advocates would dictate that we concentrate on the statement of fact (disability) and not assume that there is resulting stigma or negative consequences because of that fact.

In reality, while the two terms have never been semantically interchangeable, they have often been used as if they were. It may, in fact, be logical to assume that one will be handicapped by a severe disability, but to confuse these two distinct terms in our discussion of impairment as a human constant may seriously interfere with the clear understanding of disability issues and attitudes in Oceania. Impairment and disability (as defined) appear to be universal; handicap may not be!

Moreover, we believe it is important that the words "disabled" and "handicapped" be used in English only as adjectives – not as nouns (as in "the disabled" and "the handicapped") and that, whenever possible, discussion focus on "people with disabilities" or "people who are considered handicapped". It is our belief that an emphasis on the human factor – that is, the person to whom the disability or handicap is attached! – may be critically important in furthering the acceptance and integration of persons with disabilities in this region.

Terminology

While we have been able to gather some information about attitudes and terminology used throughout Micronesia in reference to persons with disabilities, the major focus of this paper will be on disability attitudes, issues, and responses within the Republic of Palau. It is important to digress from issues of disability to issues of linguistics in order to frame the discussion that follows.

The Palauan language has been the unique province of this island nation for hundreds of years before the Europeans came to the region. The language has changed and grown to allow for the expression of newly introduced ideas, places, foods, implements, and so on. It is still, however, more a product of Palau than of any outside influence, and thus there are inherent problems in "translating" terminology between that language and English. A term that appears to translate directly may be used to describe a given object or circumstance but carry different conceptual meanings to the "listeners" for these two very different languages. For example, the Palauan term chad ra ngebard for a Caucasian person translates (in English) to "man from the west." When one considers world geography and the relative locations of Palau and Europe and the United States, it seems obvious that this is not a reference to west as a direction, so the assumption by an English-speaking "listener" would probably be that the reference is to "western civilization". It isn’t! The initial contacts with non-Palauans were consistently from the west – the waters are deeper with wider channels (Ngeremlengui Channel) and thus more able to accommodate large sailing vessels. Therefore, people who came to Palau from the outside world were deemed "men from the west." It is the term used to identify a Caucasian, but it does not mean "white man" – it means "outsider" and would be equally appropriate in describing someone from Japan, or Africa! The English racial term translates to a cultural term in the language of Palau. If one did not know how to ask for clarification, the casual translation into words familiar in English might convey a very different idea than that expressed.

Our investigation indicates that this same kind of confusion may interfere with discussion of disability-related issues between a Palauan and someone speaking English. It is our belief that there IS no real translation of the phrase "people with disabilities" (as used in the United States today) into the language (or culture) of Palau. In English, this phrase refers to people with any of the broad range of disabilities outlined in the WHO definition. The term "disability" is used in a generic sense, grouping all kinds of restrictions or lack of ability to perform. In the culture and language of Palau, this wide variety of conditions/limitations is not seen as a single entity. People with physical disabilities are distinct from people with mental disabilities, who are distinct from people with sensory disabilities. People with chronic health impairments are not seen as belonging to or being associated with any of these three distinct groups. There is nothing that can be said or assumed about "people with disabilities" that applies to all the people in Palau who have what Western society considers to be a disability. If there is a generic term that comes close to being applicable in such a broad description it would be ngodech, a word used to refer to the state of being different. There is a generic understanding of someone who has a physical, mental or sensory disability as being different, but even this term would not be used in the case of chronic illness and the use of the term does not convey any belief in common etiology, potential, future, or associated stigma (handicap). It is used as a descriptor (such as "blond" or "freckled") but not as a means of identifying or placing one within the society.

While the language of Palau has specific terminology to identify some disabilities, other categories of disability are referred to with an almost generic nomenclature. The word for someone who is blind is mikeu; someone who is deaf is described as mechad; an amputee is described as chelmus. These words appear to mean (convey) no more or less than their English equivalents, except that they are used to describe the person as well as the condition (used as nouns as well as adjectives). By contrast, there are generalized terms to describe persons with physical disabilities from cerebral palsy affecting mobility, to paraplegia, to quadriplegia, including chitut (weak or incapable), and sechudel (part of the individual doesn’t work right) from the root selchudel, meaning "in the process of being crippled."

Blechidel is almost a slang term, meaning "cracked". It is used primarily by young people to describe someone who is mentally retarded, just as youngsters in the U.S. might use the terms "stupid" or "retard." In traditional usage, someone who is mentally retarded is called ultechei which, roughly translated, means "substitute" or "replacement". The concept conveyed is that this is not a true person, but rather a less-than-fully-human entity. This concept ties the ability to think to being a sentient being. It is interesting to note that this same attitude in Western society has most frequently been applied to persons who are deaf and unable to speak; thus, the origin of the English phrase "deaf and dumb". Anecdotal reports from Palau indicate that deaf persons have traditionally developed some rudimentary form of communication with those closest to them and have been accepted and integrated into their environment. People who are retarded, however, appear ALWAYS to remain outside full acceptance into the communities of Palau. People with other mental disabilities (psychiatric or emotional disabilities) are also traditionally discounted in the culture of Palau; the words kebelung (meaning "crazy’), and tedobech (meaning "half") are used to describe anyone whose behavior is outside the range of socially acceptable responses. While such individuals are clothed, fed and maintained within the kinship system, they are considered a burden on the family and on the community and their presence is unwelcome. Several possible explanations of this response to mental disability are explored under the heading of "Discussion".

Initial exploration into terminology used in other cultures in Oceania reveal some similar concepts. The Hawaiian language includes specific terminology to describe the conditions of blindness and deafness, but has more generic terms for a range of physical disabilities. People with psychiatric disabilities are simply referred to as "crazy". In the Maori language (Natives of Cook Islands), someone with a psychiatric disability is described by a phrase that loosely translates as "nobody’s home!" Interestingly, the Chamorro (native Guamanian) language uses the term inutil, meaning "useless", to describe someone with a disability. It is, essentially, their generic word for the English "handicapped." The Chamorro language was more heavily influenced by Spanish occupation than that of other island languages. The word "inutil" in Spanish translates as "useless". This shared terminology leads back to Scheer and Groce’s (1988) speculation that island views of persons with disabilities may have been tainted by their many years of European domination.

Classifying Severity

In Palau, as in Western society, there is a tendency to judge the severity of disability upon the amount of loss experienced, while judging the severity of handicap on the amount of function remaining. Differences in relative perceptions are more likely to surface in a discussion of the handicap created by the disability than in reaching agreement on the existence of the disability or impairment. In discussing disability, Westerners may speak of someone who has a "mild hearing loss" or a "severe visual impairment" and believe that the higher the spinal cord injury, the more severe the disability because more sensation and movement or control is lost. The people of Palau may not have terminology that allows easy expression of these distinctions, but the concept of relative loss is one that is recognized.

The type of disability, however, may influence the perception of handicap as a function of perceived "roles that are normal, depending on age, sex, social and cultural factors, for that individual" (paraphrase of WHO definition of handicap). Westerners consider someone with a visual processing problem that makes reading impossible to be more severely handicapped than someone with a visual-motor perception problem that occasionally causes him/her to trip on a curb or over-reach for an object. The language of Palau is not taught as a written language (it has become a written language through the use of English characters in an attempt to facilitate communication with English-speaking populations). An inability to read because of processing problems may pose no handicap to someone from Palau, while the inability to accurately cast your fishing line or maintain your footing on rough terrain may create a very real handicap to someone from Palau in fulfilling traditional roles and expectations. Someone who is totally blind may be much more handicapped in a Western society that relies heavily on the printed word than in Palau, where the individual’s independent mobility and ability to accomplish typical role-based responsibilities may not be appreciably effected by complete loss of vision.

At the same time, the severity of the handicap may not be judged by the severity of the disability. A man from Palau who is missing one arm but can independently do all the things required of an adult in that society (fishing, manipulating tools, hunting, dressing, eating, and so on) may not be considered handicapped by this "severe" disability (total loss of ability to perform tasks in a typical manner). In contrast, a man who has a hip injury that slows his gait and makes it impossible for him to sit in certain positions may be considered severely handicapped by this mild disability (some restriction in the ability to perform tasks in a typical manner) as he may no longer be able to participate independently in fishing and hunting.

Causation

Western views of disability generally limit exploration of causation to the medical model, searching to establish only the point at which the nerve is damaged, the spinal cord is broken, or the means by which the germ entered the system. In the culture of Palau, the question of what caused a disability is of primary importance – not the medical cause, but the spiritual cause. Sensory, physical, and mental disabilities are all believed to be caused by some failure on the part of someone to follow a tradition, fulfill a responsibility, appease an ancestor, or the like. In Palau, there is an understanding that disabilities are caused by someone’s actions (i.e., there is an element of blame attached), but that someone is not necessarily the individual who is disabled. A child born with a disability is believed to be the recipient of a punishment assigned to a parent or a kinsman. The mother may have failed to follow traditional practices which detail the appropriate behavior and actions of a pregnant woman. Or, a failure on the part of the family to meet the obligations to one another or to the community may be punished by giving the family a child with a disability. Even acquired disabilities are believed to be a function of some action or lack of action having to do with spiritual responsibilities. The accident that causes a break in the spinal cord resulting in paraplegia is brought about (by some "higher authority") in order to punish.

When someone is born with or acquires a disability, it is incumbent upon the family to seek guidance from others in determining what mistake has been made, so that atonement can be made. Once appropriate remedial action has been taken, the mistake may be "forgiven", but the individual with a permanent disability will remain disabled. This is explained by the assumption that the disability remains as a warning and a reminder to the individual and to the community of the consequences of the action – or lack of action – identified as the cause. There is no consideration of ongoing disability being a function of ongoing punishment for persons with physical or sensory disabilities. A mistake was made, a punishment was meted out, reparation was required and provided. The person who has the disability is more likely to be seen as a victim of circumstance than a guilty party.

To Westerners, this is a bit difficult to describe with any scientific reasoning. However, consider the fact that Palau is a society that even today still places strong belief in the influence of the earth, wind, ocean tide, moon, and the whole universe on their daily lives. For example, one builds a house according to a particular month of the year, the size of the moon and the tides of the ocean; a deceased is buried when the tide is going out and not before; a child is supposed to be born when the tide is coming in; the house should be facing north or south but not directly toward the sun, and so on. This is a country that still schedules its elections/referendum to coincide with a full moon. A "violation" of one of these beliefs or practices may result in a conspicuous consequence that includes disability or death.

Rehabilitation and Equalization of Opportunities

This focus on cause rather than effect can be seen to have positive implications for pursuing the Western policies of rehabilitation and equalization of opportunities in Palau. Trying to impose a Western model of medical causation for disability may well be seen as interference in island culture. Indeed, Palauans do not deny the Western medical model, they simply believe that the reasons behind medically-related phenomena can be assigned to spiritual, rather than earthly, causes. However, the introduction of the concepts and practices of rehabilitation and equalization of opportunity do not interfere in any way with native beliefs regarding the existence of disability. Palauans do not believe that a person with a disability is necessarily personally guilty or wrong,; correction of the mistake absolves the responsibility for creating the disability. Thus there would not likely be objection to any activity which can be seen to minimize the long term impact of the disability on the individual involved. It does not go against native beliefs – there are no native beliefs regarding the necessity of lasting punishment.
It is important to note, however, that cultural values that stress the importance of independence, especially for Palauan men, may interfere with the acceptance of rehabilitation policies and procedures as practiced in Western society. In the United States today, we philosophically believe, and the law proscribes that we function with, the assumption that one is not disabled unless he/she chooses to identify himself/herself as such. The system is designed around providing assistance to those who request it. In Palauan culture, it may be regarded as inappropriate for a man to request or seek assistance, for to do so would bring shame to the family or clan. Note that it is not considered inappropriate to accept assistance that is offered (especially if that assistance allows the individual to function without help in the future), but it is inappropriate for the individual to ASK for that help. Thus, a rehabilitation philosophy that waits for the individual to request assistance may ultimately fail to reach those individuals who could most benefit from the techniques and technology available. Services providers will likely need to be more aggressive in seeking out individuals who are in need of support/service.

This same emphasis on independence might serve to focus efforts of disability service providers in this culture on equalization of opportunity as a priority over (individually directed) rehabilitation. For example, much of the business of the village is still conducted in men’s clubhouses or Abai. An individual with a spinal cord injury is perfectly capable of taking part in the discussions, bargaining, and so on, that take place in this setting. However, rather than ask others to carry him up the steps of the clubhouse, the individual may be expected to absent himself from the premises so that his presence does not impose on others. If the clubhouse were ramped, so that the individual could indepedently enter the facility, his full participation in these communal activities would probably be accepted.

Discussion

An old Palauan expression from the Modekngei religion suggests that one should mesuub el mo metitur – "learn to be less knowledgeable." Until you begin to explore the vast realm of knowledge available, you do not understand how much you do not know. This has certainly been our experience in searching out the information gathered for this paper. Thus far, we have discussed knowledge gained in preparing this text. Now we must present some of the many questions (and some speculations) that we have uncovered in the course of this research.
Society has generally recognized that it does not matter what words you use to name something, so long as you are in agreement with your listener as to what that something is (Shakespeare’s "A rose is a rose is a rose..."). What are the consequences, however, of a speaker/listener relationship in which the same words are used to name the same things but with different concepts? Does it really matter if we make a distinction in English between "disability" and "handicap" when either word translates back to Palauan to mean "incapable" or to the Chamorro language to mean "useless". Is it not presumption to assume that because others have made the effort to learn and use a language, they are ready and willing to accept that view of reality as well? (NOTE: The authors believe it may be important to get in the habit of using the English expressions "people with disabilities", "individuals who are blind", and so on, whenever possible. It is much harder to translate – conceptually – "people with disabilities" to "people with useless" than to translate "disabled people" into "useless people".)

Why are persons with mental disabilities (whether mental retardation or emotional/psychiatric disabilities) viewed and responded to so very differently in many island cultures than are persons with physical or sensory disabilities? We have speculated on two possible explanations:

- Palauans, and their fellow islanders, would not be the first societies to equate the ability to function mentally with "human-ness"; if individuals with any disruption of mental abilities are seen as sub-human, then resources devoted to their care, training, or involvement would likely be seen as "wasted effort." Palauans are not likely to actively care for pets in the way that Western cultures do, either!

- The Palauan view of causation of disability allows for the "blame" to be absolved when remedial action is taken by the offending party. Physical and sensory disabilities typically have a single (unique) incident of onset. The disability is present at birth or is caused by a specific incident or accident. Once atonement has been made, life goes on. Individuals with mental disabilities may appear to have progressive disability – that is, the impact of their disability may increase over time. This would indicate that the proper actions have not been taken to correct for the mistake in action or inaction. If the disability keeps getting worse, then things haven’t been "fixed". An inability to identify and correct the indiscretion may create an ongoing stigma on the individual and the family.

People with learning disabilities currently comprise an increasingly large, identified, population of persons with disabilities in Western culture. By definition, a learning disability is a limitation or lack of ability to learn through traditional (Western?) methods. If the learning that occurs in Palauan society and culture does not employ the same methods and thus does not tap the same psychological processes (visual processing, psychological processing, organizational skills), then do learning disabilities exist for a Palauan? While the impairment certainly can exist (the neurological lesion or lack of development in the brain), does this impairment create a disability? a handicap? What if the individual leaves Palau for a Western society. Does he/she become disabled only upon leaving Palau?! Considering Palauan’s negative views of mental disabilities, how can an understanding of learning disabilities be introduced into Palauan culture and society without automatically introducing a stigma (handicap) for those individuals who are identified as having a learning disability?

This leads to a more global ethical question for disability service providers. It is likely that an emphasis on the physical (neurological) nature of learning disabilities may make the introduction of this disability more accepted/acceptable in Palauan culture. In other words, if there is emphasis on the fact that this is NOT a mental disability, but a physical one, these individuals are likely to be more easily accepted. Is it ethical and/or appropriate to better the acceptance of one group by clearly differentiating it from another group that you know is not well received, rather than trying to change the perception and acceptance of people with mental disabilities?

Is it right (appropriate) to try to impose Western views of disability on the people of Palau and Micronesia? The kind of distinctions made in most of these cultures (between physical, sensory, and mental disabilities) are not unlike the views held in traditional Western culture for many years. In the United States, the benefit gained from grouping these people under a single term – disability – has been primarily in the realm of political clout and action. The people from these disparate groups still need different accommodations, different support mechanisms, different actions on the part of society in order to equalize their opportunities. What they have in common is that they have all functioned under societal-imposed handicaps in the past, with focus on their disabilities rather than their abilities and potential. The United States has now legislated against that kind of discrimination (with the Americans with Disabilities Act), and other Western societies are moving to adopt similar broad-based policies regarding equalization of opportunity. Moreover, improved technology will allow all people with disabilities (whether from the islands or the mainland!) to function more fully and independently, thus altering societies perception of the handicaps created by their disabilities. Is there any benefit in altering the Palauan perception of persons with disabilities to adopt this Western view? If Palauans are comfortable with adapting and adopting the technology and the rehabilitation procedures, is it necessary or important to also use the conceptual framework in which these practices and products were conceived?

Summary and Conclusions

"I see, Kiwi, that you have wings, but do not fly."

"Yes, that’s true."

"Then what do you do?"

"Everything else!"

The Kiwi is the only species in nature that is biologically classified as a bird, but does not fly. It has a disability, but it is only handicapped in a world that sees it as necessary and appropriate for all birds to fly. Perhaps people with disabilities are, in truth, human Kiwi birds. It appears that all societies assume that there is some set of abilities or responses that can and should be accepted as the standard for all human beings – but that different societies have established different sets of standards.

This paper has reviewed some of the terminology used to identify and describe persons with disabilities in Western (English-speaking) society and in the Republic of Palau. The only firm conclusion we have been able to reach is that while impairment and disability may be human constants, perception of disability and handicap are not! Whether one believes that our language shapes our reality or that our language mirrors our reality, a review of comparable terminology indicates that there are two different realities, two different classification systems, two different semantic frameworks in use to describe a presumably-shared experience.

We have briefly explored Palauan views of the cause and relative severity of disability. We have tried to suggest some implications of Palauan beliefs on the practice of rehabilitation in Palau. More importantly, we have raised a number of questions regarding the perception of disability and people with disabilities in Palauan culture. It is our sincere hope that our joint collaboration at the upcoming ASAO meeting with others interested in this topic will begin to provide some answers so that we can all continue to "mesuub el mo metitur."