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~ Pergamon 0277-9536(94)00125-1 Soc. Sci. Med. Vol. 40, No. I, pp. 37~,6, 1995

Copyright © 1994 Elsevier Science Ltd Printed in Great Britain. All rights reserved

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I N D I V I D U A L OR SOCIETAL RESPONSIBILITY? E X P L A N A T I O N S OF D I A B E T E S IN A N A N I S H I N A A B E

(OJIBWAY) C O M M U N I T Y

LINDA C. GARRO Northern Health Research Unit, Department of Community Health Sciences, University of Manitoba,

750 Bannatyne Avenue, Winnipeg, Manitoba, Canada R3E OW3

Abstract--ln recent years, many aboriginal communities in North America have experienced increasing rates of maturity onset diabetes. This paper is based on interviews held with individuals diagnosed with diabetes in an Anishinaabe community in Manitoba, Canada. The varying ways people account for their own case of diabetes and the increase in diabetes generally are described. Although people talk about diabetes as a result of individual dietary choices, much of the discourse links diabetes to environmental and societal changes.

Key words--diabetes, cultural knowledge, explanatory models of illness, Ojibway

When Europeans came to the New World, diseases were introduced with profoundly negative conse- quences for the first peoples. In the Canadian central subarctic, the site of the research reported here, as in many other locations, the population was soon rav- aged by epidemics of infectious disease. Famine and poor nutrition associated with changes in subsistence strategies, often in response to pressures from the newcomers, helped to maintain high rates of infec- tious disease. Poverty, poor housing and overcrowd- ing have kept rates higher in the present century than national averages, although there has been much improvement since around World War II. However, the decline in the incidence of infectious diseases is paralleled by an increase in chronic, degenerative diseases, such as diabetes, cancer, heart disease and other cardiovascular disorders. Aboriginal communi- ties in the Canadian subarctic are currently undergo- ing what has been referred to as an epidemiological transition [1, 2].

Overall, studies of diabetes among the first peoples of North America document a rapid increase in the number of cases of maturity-onset diabetes (Type II or non-insulin dependent diabetes) since World War II, from virtually none to a situation described as an 'epidemic' [3, 4]. Although more current reviews of diabetes morbidity data show that rates are variable across North America, a recent study carried out in several Ojibway and Cree communities in Manitoba found that the prevalence of diabetes was signifi- cantly higher in these communities when compared to the general population and that more than half of the existing cases had been diagnosed during the last five years of the 25-year study period [5]. A national Canadian study confirmed high rates of diabetes for the aboriginal population in many areas. In addition,

for most regions, rates were higher in the southern latitudes [6]. To explain the high rates of diabetes, researchers have pointed to an interaction of genetic components and environmental risk factors, such as obesity, diet, stress and a sedentary lifestyle [7]. In the national study, the significant negative association between latitude and disease rates led researchers to suggest "that latitude indicates the strength of under- lying Euro-Canadian influence, manifest as lifestyle changes along a n o r t h - s o u t h gradient" [6, p. 137]. One study examining risk factors for diabetes, obesity and hypertension in a n u m b e r of reserve communities in the Canadian subarctic concludes that although comparable data from the Canadian national popu- lation are not consistently available, these problems clearly exist to a much greater extent within the subarctic aboriginal population [8]. There is a grow- ing awareness in communities and among those involved in health care for aboriginal peoples-- including aboriginal organizations, government medical services, health professionals and re- searchers--that diabetes is a significant health prob- lem that is not well addressed. At present, there is no reason to expect decreases in rates of disease or complications. This paper is based on a series of interviews carried out in an Anishinaabe reserve community (Anishinaabe, and its plural, An- ishinaabeg are how people in this and other commu- nities refer to themselves; they are also known in different locations as Ojibway, Ojibwa, Saulteaux and Chippewa. Ojibway will also be used here as this term is used when presenting the community to outsiders). The focus here is on how people in the community accounted for both their own case of diabetes and the increase in cases of diabetes within the community.

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38 LINDA C. GARRO

Crandon [9, p. 463] has noted that "what people say about their social world through the idiom of medicine are statements about political and economic realities, and the meanings of ethnic relations." In the interviews, it was frequently stated that diabetes is a 'new' illness that was not present 'in the old days.' Some reported that diabetes was now so common that it seemed as if 'everybody is diabetic.' People often expressed their concern and puzzlement about the ever increasing numbers of community members who had received a diagnosis of diabetes, as can be seen in the following exchange between a married couple:

That's what I mean, where does it come from? Everybody's starting to have that diabetes.

Yes, everybody has it.

I guess pretty soon everybody on the reserve will be like that (D15, f, age 49 and husband [10]).

F o r diabetes, much of what people have to say is embedded in a broader, generally shared, discourse about 'white m a n ' s sicknesses.' An illness labelled as a white m a n ' s sickness is seen as occurring for the first time after Europeans came to North America (other illnesses commonly referred to with this label include measles, chicken pox, tuberculosis, cancer and high blood pressure). White m a n ' s sicknesses contrast with other illnesses which are attributed to retribution for wrong-doing, the covert use of 'bad medicine' to cause sickness in others, or illness which can be explained by reference to a potentially observable event, such as excessive cold, overeating, smoking or overexertion.

Diabetes is specifically linked to the move away from foodstuffs obtained through hunting and gath- ering to an almost complete reliance on purchased foods. This change is seen as occurring within basi- cally the same time frame as community members receiving diagnoses of diabetes and is thus consistent with the widely shared perception that diabetes is a new illness.

Yet, people are also influenced by biomedical practitioners and explanations of diabetes also incor- porated ideas attributed to information provided by physicians and other health professionals. These ex- planations draw on ideas about individual responsi- bility for health, ideas which are common in North American culture [11] and an integral part of many health promotion messages [12, 13]. When supporting this view, people stated that diabetes develops be- cause of diet or other lifestyle habits. In particular, eating too much sugar or being overweight were often mentioned.

Usually both types of explanations were given in the interviews. While many discussed diabetes result- ing from individual dietary choices, the majority also saw a relationship between diabetes and broader societal and environmental changes. There is, how- ever, variation in how individuals express these views. This paper explores this variation.

THE RESEARCH SETTING

The research site is an Anishinaabe reserve com- munity located in southern Manitoba. Although some children speak only English, it is a community where most adults still speak their own language and prefer it in most social settings. As in many Canadian reserve communities, there is insufficient land either on the reserve or surrounding it to allow individuals to follow subsistence or trapping-based means of livelihood, except for a few fishermen. Over time, much of the land surrounding the reserve has been acquired for cultivation, although not by reserve members. There are, however, some small tracts of reserve lands which are farmed by a few families. Most other employment opportunities are through Band (tribal) government or related services. There is high unemployment and many are dependent on some form of economic assistance. Housing is crowded and substandard; the majority of the houses lack indoor plumbing of any kind.

The process of moving away from a resource based economy has occurred over time and in a variable manner. Some households have large gardens; wild game and fish supplement the diets of most families, and some rely much more heavily on such products than others. Because of the lack of on-reserve em- ployment, older people commented that when they were younger they would often move back and forth between the reserve and work sites in agriculture or in the city. This still occurs to some extent. Some elders state that a major shift occurred in the late 50s when welfare assistance became available making it possible for people to both live full-time on the reserve and to purchase store bought goods. Increases in access to and demand for consumer goods date from about that time.

Biomedical practitioners and Anishinaabe healers may be asked to provide diabetes care. Among those who reported consulting an Anishinaabe healer, the request was typically for herb-based medicines, said to be effective in controlling diabetes. For the remedy to be effective, it is necessary for those taking it to abstain from drinking alcohol. Several individuals in the community were said to know how to make such a remedy. Distinct from those who only make herbal medicines, are healers described as 'gifted' because of their ability to communicate with and be guided by spiritual beings. This kind of healer is rarely con- tacted for advice when a diagnosis of diabetes has already been given by a physician, although they are consulted on numerous other occasions and es- pecially when the cause of an illness or other misfor- tune is uncertain.

A health center located on the reserve is staffed by visiting physicians approximately three afternoons a week. The health center also employs two public health nurses and two community members who have received specialized training as health workers. Other physicians and hospitals are located in towns about

Explanations of diabetes in an Anishinaabe (Ojibway) community 39

an hour's drive away. All medical care, including transportation costs and prescription drugs, are either covered by universal health insurance or the federal government.

Physicians and nurses working in the community stress the need for individuals to change their behav- ior in order to control diabetes. At the time of initial diagnosis, physicians state that they do not spend much time discussing the possible causes of diabetes or the physiological nature of the disease; the empha- sis is on those factors seen as being under the personal control of their patients. Patients are typically ad- vised to lose weight through changing their diet and getting more exercise. These messages are often re- inforced during follow-up sessions with nurses, com- munity health workers, or a hospital-based dietician, if the person spends any time in a hospital. The preferred treatment strategy is to prescribe drug therapies only if the patient does not lose weight or if the blood sugar levels remain high in spite of weight loss. One physician explained that the only treatment that could work on a long term basis was "diet and exercise" as drug therapies were ultimately counter- productive. However, at least with respect to the current patient profile, many are eventually placed on oral hypoglycemics or insulin injections.

STUDY P A R T I C I P A N T S

Eight were on insulin (D5, DI3, D16, DI9, D22, D26, D27, D28). The remaining 22 had all been prescribed oral hypoglycemics in the past and 16 reported that they were on pills currently. For the six who reported they no longer took pills, four clearly stated that they had made the decision to stop without seeking a physician's advice (D8, D20, D21, D24; reasons given include a lessening of symptoms, concern about the negative effects of medication, and running out of pills and neglecting to obtain more) and the other two had been in contact with their physician (D18, D30). A r o u n d half reported having tried herbal remedies, and several said they were using them at the time of the interview. Several likened these remedies to pills or insulin, pointing out that by themselves, they control but do not cure diabetes. The main difference is that costs are incurred for herbal remedies whereas pills and insulin are provided at no charge. Some had stopped taking the herbal remedies because of the cost involved. Others, however, felt that diabetes was not an appropriate sickness for Anishinaabe healers to treat and that seeking care from a physician was more suitable. No one reported knowing of an An- ishinaabe healer who could cure diabetes, with differ- ent opinions expressed about the likely existence of such a healer. Responses were split for a question which asked whether an Anishinaabe healer could cure diabetes.

All of the 34 individuals who participated had been previously diagnosed with diabetes. They were ident- ified through a list of chronic illness cases and were initially contacted by the local health center. The majority are women (n = 26) with a mean age of 49 years. The high proportion of women on the chronic list and in the sample is partially explained with reference to two observations. First, women tend to seek out care from the local health center more than men, who may consult with physicians in other locations. Second, existing statistics for the central Canadian subarctic show that more women have diabetes than men [5, 6]. In terms of formal edu- cation, one informant had completed grade 8, but none of the others reported going beyond grade 6.

At the time of the interview, individuals were doing different things to deal with their case of diabetes. As noted above, physicians and other health workers may recommend several treatment strategies, includ- ing changes in diet and exercise, in addition to prescribed medications, if any. Because of the com- plex nature of treatment recommendations, investi- gating adherence to such recommendations was beyond the scope of the present study. During inter- views with the physicians providing care, they de- scribed their diabetic patients as poorly compliant, especially in following recommendations for dietary changes, losing weight, and increased exercise.

Information was collected, however, on medication usage. The primary treatment recommended for four individuals was changes in diet (D3, DI7, D25, D29).

DATA C O L L E C T I O N AND ANALYTIC P R O C E D U R E S

Two interview formats were used. First, using an open-ended explanatory model framework [14], indi- viduals were asked questions about the cause of the illness, why it started when it did, the history of the illness, the kinds of effects it has, what possible and appropriate treatments there are, along with other related questions and additional questions that arose from the responses given. Individuals were free to respond in either Ojibway, English or a mixture of both. A community member, trained in the trans- lation and interpretation of the questions, helped when required. Fourteen were conducted mainly in English, with most of the remainder predominantly in Ojibway, although there was often a moderate a m o u n t of switching between languages. The inter- view was tape recorded and later transcribed.

After this discussion, individuals were presented with a series of statements in Ojibway. After hearing a recording of each statement (to minimize variation in presentation as no written form of Ojibway is used in this community), the individual was asked whether the statement was true or not. The 68 statements followed an appropriate format in Ojibway and were taken from comments made in an earlier set of informal interviews about illness carried out separ- ately with 35 individuals. Many of the statements came out of discussions about diabetes or hyperten- sion, others came out of discussions of other illnesses. The statements therefore do not represent the

SSM 40 I - - I )

40 LINDA C . GARRO

concerns o f health practitioners, but rather comments and reflections m a d e by other community members. A highly similar set o f sentence frames was used in a parallel study o f understandings a b o u t high b l o o d pressure carried out in the same community; the statements used in the interview a p p e a r in the appen- dix o f another publication [15].

Statements were chosen to cover the same topics as the explanatory model interviews, e.g. possible causes, consequences, s y m p t o m s and treatments. A little over a fourth o f the statements concerned potential causes. A m o n g other questions, people were asked if diabetes could develop from ingesting too much o f particular foods (e.g. foods high in sugar, salty foods, greasy foods) or drinks (e.g. alcoholic beverages, water), from smoking too much, from chemicals and additives in foods, from being over- weight, from stress, from working too hard, if dia- betes ran in families, if diabetes is contagious, and if the Anishinaabeg had diabetes before white people c a m e .

These statements were presented after the explana- t o r y model interview so they would not influence the more open-ended p a r t o f the interview. While it would have been preferable to give each interview format in separate sessions, this was not logistically possible. When responding to the true-false state- ments, people often made additional comments to s u p p o r t o r clarify their response. In addition, the true-false statements provide a check for items not mentioned in the e x p l a n a t o r y model interview, which may occur through omission or when a particular true-false statement does not correspond to the indi- vidual's personal experience but does represent knowledge a b o u t diabetes learned through inter- action with others.

The responses to these statements were examined using cultural consensus analysis [16]. Cultural con- sensus analysis was motivated by the observation that when an a n t h r o p o l o g i s t asks questions o f informants, neither the culturally a p p r o p r i a t e response nor the ability o f the informant to give the culturally a p p r o - priate response is known. The cultural consensus model analyses questionnaire d a t a and provides an estimate o f each individual i n f o r m a n t ' s cultural com- petency (that is, the degree to which each informant represents shared cultural knowledge a b o u t the given domain). These estimates are then used to determine the 'correct' response and their associated level o f confidence. The model is based on the assumption that the questions tap a coherent cultural d o m a i n shared across informants, and provides a criterion for assessing whether this assumption is met. As a full description o f the analytic procedures is available elsewhere [16-18], only a summary is given here.

The model is based on a factor analysis o f the matrix o f response matches among informants after a mathematical correction for guessing. F o r the assumption o f shared cultural knowledge to be sup- ported, the a m o u n t o f variance accounted for by the

first factor, which represents competence, should be several times larger than the second, with all other factors being relatively small. F o r this d a t a set, the first eigenvalue is 12.32, the second is 2.84, and the subsequent eigenvalues are quite small. The obtained ratio o f 4.34 is in the same general range as other studies and supports the assumption o f shared under- standings a b o u t diabetes.

The mean competency for all respondents is 0.576 which can be interpreted as meaning that respondents ' k n e w ' the answers to approx. 58% o f the questions. A d d i n g to this value the half o f the remaining questions for which individuals can be expected to guess the correct answer, on average 79% o f the answers given reflect shared cultural understandings a b o u t diabetes. F o r each true-false question, the p r o g r a m determines whether true or false is the culturally 'correct' response and provides an associ- ated level o f confidence, providing the investigator with a basis for assessing whether there is consensus for individual questions, and not just for the d a t a set as a whole. Nine o f the 68 statements did not reach significance with the confidence level o f P < 0.001 and thus could not be reliably classified true or false (therefore, there is no shared agreement a b o u t the response to these statements).

Because o f the focus on explanations for diabetes a complete analysis o f this d a t a set will not be presented here, although it is available elsewhere [19]. However, the pattern o f responses and the level o f consensus for the subset o f statements relating to cause will be discussed when relevant in the following sections.

S H A R E D U N D E R S T A N D I N G S A B O U T D I A B E T E S

Diabetes is seen to arise because there is too much sugar in the body. 'Sugar sickness' o r 'sweet sickness' are translations o f terms in Ojibway used to refer to diabetes. When speaking in English, the word ' s u g a r ' may be used interchangeably with diabetes. A l t h o u g h diabetes is usually described as a long-term condition, it is also considered to be episodic, depending on whether the a m o u n t o f sugar in the b o d y is high, low or 'on the level.' All but one person agreed with the true-false statement that the level o f sugar in the b o d y goes up and down. There are ways individuals can influence the a m o u n t o f sugar in their body, for example, by eating certain foods. Most claim to be able to tell when their sugar is high by the presence o f symptoms. These include blurry vision, thirst, excessive weakness and fatigue, headaches, dizziness, numbness in hands and feet, and feeling warm or feverish. Some reported using perceived symptoms as a cue for taking medication; others used their physi- cal state as a yardstick for assessing current food intake or the effectiveness o f treatment. People see themselves as varying in severity. Those who de- scribed themselves as having only 'a bit o f sugar' along with those whose primary treatment was diet

Explanations of diabetes in an Anishinaabe (Ojibway) community 41

a n d exercise o r t h o s e w h o h a d s t o p p e d t a k i n g m e d i - c a t i o n s (the first feature typically c o - o c c u r s with o n e o f the o t h e r two), described their o w n case o f d i a b e t e s as n o t t o o serious. W h i l e such i n d i v i d u a l s m a y experi- ence s o m e s y m p t o m s , they generally c o n s i d e r t h e m - selves to be in a relatively g o o d state o f health. T h o s e w h o are o n insulin are m u c h m o r e likely to j u d g e their case o f diabetes as a serious illness, as d o others. All but one person agreed with the s t a t e m e n t that dia- betes c o u l d result in death. I n the e x p l a n a t o r y m o d e l interview, p e o p l e n o t e d that diabetes c o u l d lead to blindness a n d limb a m p u t a t i o n s a n d e v e r y o n e k n o w s at least o n e person w h o was suffered a severe c o m p l i - c a t i o n a t t r i b u t e d to diabetes.

A s n o t e d earlier, there are t w o general types o f e x p l a n a t i o n s for diabetes. F o r the first, d i a b e t e s is b r o a d l y a t t r i b u t e d to the ' f o o d s we e a t . ' E v e r y indi- v i d u a l gave a diet-related e x p l a n a t i o n for their o w n case o f diabetes. E a t i n g o r d r i n k i n g t o o m u c h o f p a r t i c u l a r things o r o v e r e a t i n g in general were c o m - m o n l y m e n t i o n e d . S u g a r o r f o o d s high in s u g a r were the m o s t f r e q u e n t items singled out. A n u m b e r o f times, a c c o m p a n y i n g this type o f e x p l a n a t i o n was a s t a t e m e n t t h a t this is w h a t they had been told by a d o c t o r o r nurse. H e r e are s o m e s a m p l e c o m m e n t s :

You get ~sugar' eating too many sweets--sugar, candy bars, sodas--things like that. That's the main thing. You eat too much, and you get sugar easily. I guess everybody has sugar, but some people have too much (DI4, f, 63).

That's what 1 would say it comes from--sugar. Someone who used a lot of it. Yes, that would make you fat and that is where diabetes comes from (D26, f, 37).

1 got sugar because I was too fat. I weighed too much (D11, f, 62).

I used to drink a lot of homebrew before and that stuff is made with sugar. I knew an old man who got that sickness from it. He always made homebrew to drink for himself and he got sugar diabetes and he also didn't eat sweets so I think that is where he got it from (D30, f, 48).

The ones that like to drink wine. I knew a lot who did and that's where they got the sickness from because it's sweet (D25, m. 41).

F o r the t r u e - f a l s e q u e s t i o n s there were high levels o f a g r e e m e n t for s t a t e m e n t s t h a t d i a b e t e s c o u l d c o m e f r o m ingesting t o o m u c h s u g a r (100%), f r o m d r i n k - ing t o o m u c h a l c o h o l (85%), a n d f r o m being over- weight (82%).

T h e o t h e r widely shared causal e x p l a n a t i o n places d i a b e t e s within the c o n t e x t o f a diet c h a n g i n g f r o m a b o r i g i n a l wild f o o d s to o n e o f p r i m a r i l y store b o u g h t foods. This e x p l a n a t i o n was used to a c c o u n t for the recent i n t r o d u c t i o n o f d i a b e t e s into the c o m - m u n i t y . Also related to this are c o m m e n t s t h a t it seems as i f ' e v e r y b o d y is d i a b e t i c ' a n d p r e d i c t i o n s t h a t in the foreseeable future ' e v e r y b o d y o n the reserve will be like t h a t . ' A s n o t e d earlier, diabetes is o f t e n t a l k e d a b o u t as a ' w h i t e m a n ' s sickness' a n d is g r o u p e d with o t h e r illnesses seen as b e i n g i n t r o d u c e d to N o r t h A m e r i c a by E u r o p e a n s . S t a t e m e n t s similar to the f o l l o w i n g o c c u r r e d in a n u m b e r o f interviews:

" I t ' s the white m a n ' s fault. A n i s h i n a a b e g n e v e r h a d s u g a r d i a b e t e s " ( D I 8 , f, 63). I n a n s w e r i n g t r u e - f a l s e questions, all b u t f o u r i n d i v i d u a l s r e s p o n d e d nega- tively to: " D o y o u t h i n k t h a t b e f o r e the white m a n came, the A n i s h i n a a b e g h a d d i a b e t e s ? " H o w e v e r , t h o s e in the m i n o r i t y also n o t e d t h e increasing n u m - bers o f p e o p l e with d i a b e t e s a n d c o n n e c t e d this with changes in e a t i n g habits. Below are s o m e e x a m p l e s o f the types o f s t a t e m e n t s p e o p l e m a d e :

They never ate the foods we're eating now. They used to eat wild life. Nowadays nobody eats wild food (D31, f, 44).

In the old days, Indians ate nothing but wild food. Nobody was ever sick (D30, f, 48).

Long ago people lived to be 100 years old. They survived that long. They didn't eat junk food, like we do today. They survived that long without these illnesses. And nowadays, just look, they're coming in with all these sicknesses all the time (D10, m, 59).

The food we eat today, nobody ate it before. The only food they ate was wild foods. Even in the summer, ducks were eaten, but ever since everything was forbidden, people have all kinds of sicknesses (D15, f, 49).

In the old days, Anishinaabeg were healthy and happy; nowadays they get operations. In the old days they would never get s i c k . . . That's what my mother told me--these old people didn't get sick. They ate wild fruit and wild veg- etables---carrots, turnips, onions (DI4, f, 63).

VARIATION IN EXPLAINING DIABETES

A n e x p l a n a t i o n that was v a r i a b l y r e p o r t e d c o n - cerned the i m p o r t a n c e o f heredity. In the e x p l a n a t o r y m o d e l interview, o n l y seven p e o p l e m e n t i o n e d t h a t diabetes r a n in families and f o r n o o n e was h e r e d i t y either the key o r exclusive cause. H o w e v e r , slightly o v e r h a l f r e s p o n d e d positively to the t r u e - f a l s e ques- tion asking i f d i a b e t e s r a n in families. A g r e e m e n t with this s t a t e m e n t tends to reflect family experience with d i a b e t e s as well as inquiries f r o m h e a l t h care pro- fessionals a b o u t relatives with diabetes. F o r m a n y , a n e x p l a n a t i o n based o n heredity d o e s n ' t seem to fit because o f the s h o r t time p e r i o d in which c o m m u n i t y m e m b e r s h a v e been d i a g n o s e d with diabetes. A n o t h e r cause m e n t i o n e d by several i n d i v i d u a l s in the ex- p l a n a t o r y m o d e l interviews is w o r r y a n d stress. H o w - ever, the t r u e - f a l s e q u e s t i o n a b o u t w h e t h e r a stressful life c o u l d lead to diabetes did n o t achieve a significant level o f a g r e e m e n t ( a l t h o u g h there was c o n s e n s u s for the s t a t e m e n t t h a t w o r r y i n g t o o m u c h c o u l d raise o n e ' s sugar level).

M o r e w i d e s p r e a d a c c e p t a n c e a n d a d v o c a c y are associated with the t w o diet-related e x p l a n a t i o n s s u m m a r i z e d in the p r e c e d i n g section. A s described up to this point, these two e x p l a n a t i o n s represent c o n - sensus views. T h e r e is v a r i a t i o n in responses a n d m u c h o f this is due to individuals c h a m p i o n i n g a n e l a b o r a t e d v e r s i o n o f o n e o f these e x p l a n a t i o n s , at times a l m o s t to the virtual exclusion o f the other. A t o n e end are t h o s e w h o see d i a b e t e s p r i m a r i l y , a s a c o n s e q u e n c e o f b r o a d e r societal changes that h a v e led to a diet based o n f o o d s full o f additives a n d o t h e r

42 LINDA C. GARRO

chemicals. It is these additives a n d chemicals which are b l a m e d f o r diabetes. S o m e h o l d i n g this view felt that there was little i n d i v i d u a l s c o u l d d o themselves to p r e v e n t o r m a n a g e the disease. A t the o t h e r end are i n d i v i d u a l s w h o e m p h a s i z e individual responsibility f o r d e v e l o p i n g diabetes, placing the b l a m e o n p e o p l e e a t i n g the w r o n g foods, d r i n k i n g t o o m u c h , o r being o v e r w e i g h t . F r e q u e n t reference to i n f o r m a t i o n f r o m health c a r e profes sionals was cited as justification. T y p i c a l l y d i s c o u n t e d o r denied was the view that diabetes is a n e w illness for the A n i s h i n a a b e g . H o w - ever, the m a j o r i t y o f individuals d r a w o n parts o f b o t h perspectives, a n d m o v e b a c k a n d f o r t h f r o m o n e to the o t h e r in the c o u r s e o f an interview. F o r this reason, r a t h e r t h a n seeing t h o s e clearly s u p p o r t i n g o n e view as distinctive, the strongest p r o p o n e n t s o f the a l t e r n a t i v e m o d e l s are best t h o u g h t o f as repre- senting e n d p o i n t s o f a c o n t i n u u m . A l t h o u g h the e m p h a s i s will be p l a c e d o n p o r t r a y i n g these t w o perspectives, it s h o u l d be n o t e d t h a t a n u m b e r o f the q u o t e s c o m e f r o m individuals w h o are n o t at the e n d p o i n t s b u t in the middle.

Before t u r n i n g to a discussion o f these t w o a l t e r n a - tive models , it s h o u l d be p o i n t e d o u t that all o f t h o s e interviewed, even those at the e n d p o i n t s , were c o g n i - z a n t o f b o t h . It was n o t u n c o m m o n for p e o p l e to disagree with a given idea i n d i c a t i n g that they have h e a r d o t h e r s s u p p o r t it. F o r e x a m p l e , o n e w o m a n w h o a t t r i b u t e d her d i a b e t e s to e a t i n g t o o m u c h s u g a r a n d b e i n g o v e r w e i g h t r e s p o n d e d to the t r u e - f a l s e s t a t e m e n t a b o u t chemicals a n d additives in f o o d s with the f o l l o w i n g c o m m e n t : " A lot o f t h e m say t h a t b u t I d o n ' t believe i t " (D26, f, 37).

T h e first p o s i t i o n to be e x a m i n e d will be referred to as the c o n t a m i n a t e d f o o d m o d e l . A s t r o n g version o f this m o d e l was held by five individuals (D4, D15, D I 8 , D31, D32, m e a n a g e = 53), a l t h o u g h the key c o n c e p t c o n c e r n i n g the c o n t a m i n a t i o n o f c o n t e m p o - rary f o o d s was shared by the m a j o r i t y o f participants. P e o p l e saw interference with the n a t u r a l e n v i r o n - m e n t , f o r e x a m p l e , p o l l u t i o n a n d o t h e r m e a n s o f c o n t a m i n a t i o n , as e n t e r i n g the b o d y t h r o u g h f o o d , d i s t u r b i n g the b a l a n c e o f the b o d y a n d leading to diabetes, a n d o f t e n o t h e r illnesses as well. D i a b e t e s b e g a n when " t h e white m a n started to p u t s o m e t h i n g into the f o o d " (D32, f, 60). C o m m e n t s associated d i a b e t e s with h a r m f u l c h e m i c a l substances sprayed o n crops, injected into a n i m a l s o r a d d e d to foods, p a r t i c u l a r l y c a n n e d foods. A l s o m e n t i o n e d were larger e n v i r o n m e n t a l disturbances, such as the C h e r - n o b y i n u c l e a r disaster o r b o m b tests. H e r e are s o m e s a m p l e statements:

A long time ago there was no fertilizer or anything in the wild. They ate wild stuff. Now they have spray. They spray everything, there's even spray on mosquitos. They are making that disease for themselves, that's what they are doing. So that's why when a mosquito bites you, some people get sick from that. They give you poison, or some- thing. That's the white people making that up for them- selves. And then everybody gets it. Not only the white

people but the Indians get it too. It's where they get the sickness from (D4, f, 49).

A long time ago nobody had it. Its the food today that causes it. White people put too much chemicals on the food. The farmers put too much chemicals on the crops (Dl8, f, 63).

Because we eat everything and the cattle get needles, maybe that's where someone gets diabetes from. The grass the cattle eat is also sprayed (D25, m, 41).

We never had sugar before, only since we started having these fridges and deep freeze and canned stuff. Yeah, all sickness is coming from that gradually. Gradually, you know, it takes a long time. You don't get it right away. It's the same for heart trouble, stroke and stuff like that. Anishinaabeg never used to have these (D9, m, 52).

There wasn't that much sickness in those days. I think its the food. Well, there's all kinds of stuff in it. They put all kinds of stuff in it (Dl 1, f, 62).

T h e r e was also high a g r e e m e n t f o r the t r u e - f a l s e s t a t e m e n t asking w h e t h e r s o m e o n e can get diabetes because o f all the chemicals a n d o t h e r ' p o i s o n s ' present o n the e a r t h t o d a y (79%).

W h a t set a p a r t the five strongest p r o p o n e n t s o f this view was their exclusive reference to this m o d e l . This was the only cause proffered in the e x p l a n a t o r y m o d e l interview. T h e t r u e - f a l s e s t a t e m e n t asking w h e t h e r d i a b e t e s r a n in families was rejected by them. W h i l e they a g r e e d with s t a t e m e n t s that f o o d s c o u l d cuase diabetes, this was n o t because o f the n a t u r e o f the f o o d s themselves b u t because o f the c o n t a m i n a t i n g effects o f a d d e d substances. U n l i k e the p o s i t i o n t a k e n by m o s t others, there was n o t h i n g inherently h a r m f u l in f o o d s high in s u g a r o r alcohol. O n e individual differentiated m a p l e s u g a r f r o m white sugar, a n d stated o n l y the l a t t e r c o u l d c o n t r i b u t e to the d e v e l o p - m e n t o f diabetes. A n o t h e r e x p l a i n e d the r e l a t i o n s h i p b e t w e e n d r i n k i n g a n d diabetes because " e v e r y d a y they a r e p u t t i n g m o r e chemicals in b e e r " (D10, m, 59). In c o n t r a s t to m o s t o t h e r s they agreed with t r u e - f a l s e s t a t e m e n t s a s k i n g w h e t h e r diabetes c o u l d c o m e f r o m greasy foods, f r o m salty foods, o r even f r o m the w a t e r y o u drink, since, as o n e p e r s o n stated: " M a y b e because the white p e o p l e p u t t o o m u c h p o i s o n o r spray in the w a t e r to purify it. T h a t ' s where the sickness c o m e s f r o m " (D18, f, 63). O n e o f the two p e o p l e w h o agreed with the s t a t e m e n t that diabetes c o u l d c o m e f r o m t o o m u c h s m o k i n g suggested that there were a d d e d substances in c o m m e r c i a l cigarettes. A n o t h e r e x p l a i n e d h o w " Y o u c o u l d get it a n y p l a c e " a n d then went o n to detail h o w it c o u l d be in the grain, the milk, the m e a t , the vegetables, in a n y t h i n g at all (D4, f, 49). A n o t h e r said:

If you knew what food it was you wouldn't eat it. But nobody knows which one, because you eat everything. You don't know which one causes it (Dl5, f, 49).

E x a m p l e s were also given which ran c o u n t e r to ideas a b o u t individual responsibility:

There was a woman I knew who never had sweets and she never drank--she had diabetes just the same. And she never

Explanations of diabetes in an Anishinaabe (Ojibway) community

touched any sweets or sugar or anything, and she had it just the same (D4, f, 49).

Suzanne doesn't eat sweets and yet she got it just like that (D28, m, 48).

S o m e r e c o u n t e d h o w in the past they h a d tried to f o l l o w the diet suggested by d o c t o r s a n d others, b u t with little success. O n e explained:

Well, he told me not to eat too many sweets, but I tried that. Whatever the doctor told me, 1 tried it, but it didn't help me. 1 went worse. Now I just eat normal the way I eat (D4, f, 49).

L a t e r she stated:

I eat lots of sweets. I still eat lots of sweets. It doesn't harm me at all.

In c o n t r a s t to s o m e o t h e r s w h o felt there was little i n d i v i d u a l s c o u l d d o in response to diabetes, she r e p o r t e d t h a t w h a t helped her the m o s t is eating a v a r i e d diet with m e a t , j u i c e a n d vegetables. She also stated t h a t e a t i n g sweets every so o f t e n was beneficial r a t h e r t h a n h a r m f u l as h a v i n g t o o little s u g a r c o u l d be as p r o b l e m a t i c as t o o m u c h . A n o t h e r w o m a n ( D I 8 ) e x p l a i n e d h o w she initially f o l l o w e d the rec- o m m e n d e d diet b u t when her h e a l t h did n o t i m p r o v e , she decided to e l i m i n a t e c a n n e d f o o d s f r o m h e r diet a n d to rely m a i n l y o n f o o d a c q u i r e d by g a r d e n i n g , h u n t i n g a n d fishing. She also started to take a n A n i s h i n a a b e h e r b a l r e m e d y f o r diabetes. S h o r t l y after m a k i n g these changes, she reports t h a t her s u g a r levels h a v e r e t u r n e d to n o r m a l a n d t h a t she n o l o n g e r is o n any m e d i c a t i o n for diabetes a l t h o u g h she does c o n t i n u e to eat in the s a m e m a n n e r . She credits the c h a n g e in diet for the i m p r o v e m e n t in her health. In general, p e o p l e did c o m m e n t t h a t while those living ' u p n o r t h ' m i g h t h a v e better access to the types o f f o o d s e a t e n in the past, t h a t this was n o t a feasible a l t e r n a t i v e for t h e m as the a r e a s u r r o u n d i n g this c o m m u n i t y has been settled a n d cultivated.

T h e o t h e r m o d e l will be called the b i o m e d i c a l teachings m o d e l as t h o s e e x e m p l i f y i n g this perspec- tive c o m m o n l y referred to s t a t e m e n t s m a d e by phys- icians o r i n f o r m a t i o n they h a d o b t a i n e d by r e a d i n g a b o u t diabetes. This is n o t e q u i v a l e n t to a h e a l t h p r a c t i t i o n e r ' s m o d e l , h o w e v e r , b u t r a t h e r represents views t h a t p e o p l e credit to h e a l t h professionals. F o u r i n d i v i d u a l s are clearly identified with this p o s i t i o n (D5, D17, D I 9 , D26, m e a n a g e = 38). T h e s e f o u r were a m o n g the seven w h o discussed heredity in the e x p l a n a t o r y m o d e l interview. These individuals agreed with the s t a t e m e n t that it was s o m e o n e ' s o w n fault if they got diabetes, a l t h o u g h a consensus response was n o t a c h i e v e d f o r the g r o u p as a whole. In a d d i t i o n , they were the o n l y i n d i v i d u a l s w h o a g r e e d with t h e s t a t e m e n t t h a t d i a b e t e s existed b e f o r e the arrival o f white m e n to N o r t h A m e r i c a . T h e r e a s o n i n g b e h i n d this response was t h a t A n -

43

i s h i n a a b e g m u s t h a v e h a d d i a b e t e s in the o l d days, o n l y p e o p l e d i d n ' t k n o w w h a t it was:

They might have had it too, maybe that's what they died from suddenly. Because people used to die suddenly. That's what I think. Because doctors were not available (D19, f, 40).

Well, that sickness has been here for 2000 years, that sugar diabetes. It says so in this book. People had it but didn't know about it, until 1921 when insulin was discovered (D5, m, 40).

T h e m a n w h o m a d e this last s t a t e m e n t went o n to say:

A long time ago people didn't have sugar or candies. But maybe for people who were overweight, it could cause them to develop sugar. Someone that's fat, that's how that sickness starts.

It s h o u l d be n o t e d that the m e a n age o f 38 years for these individuals is l o w e r t h a n b o t h the overall a v e r a g e f o r all study p a r t i c i p a n t s o f 49 years a n d the m e a n age o f 53 years f o r the strongest p r o p o n e n t s o f the c o n t a m i n a t e d f o o d model. M o r e diabetes w o u l d h a v e been present in the c o m m u n i t y w h e n these individuals were g r o w i n g up t h a n w o u l d have been true for the others. T h e s e individuals described dia- betes as a result o f eating t o o m a n y sweets, o v e r e a t i n g generally o r drinking. N o m e n t i o n was m a d e o f processing o r additives in s t o r e - b o u g h t f o o d s a n d the t r u e - f a l s e q u e s t i o n o n this t o p i c was rejected by all four. T w o individuals did p o i n t to the h a r m f u l effects o f c a n n e d foods. O n e talked a b o u t the high fat c o n t e n t o f c a n n e d meats which c o n t r i b u t e d to obesity a n d diabetes. T h e o t h e r n o t e d the increased a m o u n t s o f sugar in f o o d s that were currently eaten: " I t ' s the things we eat now. All that j u n k food. T h e y even put sugar in the vegetables n o w " (D3, f, 40). These individuals, as well as others, discussed h o w eating certain things, m o s t c o m m o n l y f o o d s high in sugar, w o u l d lead to s y m p t o m s o f diabetes.

F r o m this perspective, people talked a b o u t changes in diet that w o u l d lead to an i m p r o v e m e n t in their health. O n e m a n w h o h a d been placed o n a diet and r e p o r t e d that his diabetes was currently u n d e r c o n t r o l explained h o w it was necessary to c o n t i n u e to watch his f o o d intake:

Because it could come back. And if you are fat it would never leave. It will never leave me if I eat too much. Sometimes 1 eat a lot, but I have to work it off right away (D25, m, 41).

Similar c o m m e n t s were m a d e by others:

You eat too much sweets, like sugar, candy, and sweets, and your sugar goes high. But if you quit on your sweets, it stays. I guess there's no cure for that. But when you look after yourself, it's not so bad (DI4, f, 63).

My sugar isn't so bad. If I lose weight, I may not have to take pills, but I can't lose weight. I like to eat (D23, f, 37).

A n o t h e r e x a m p l e is a m a n w h o explained:

The trouble is ! drink a lot, lots of liquor, on Fridays and S a t u r d a y . . . It's like I'm overeating. That's why I got sugar diabetes, and that's what the book says (D5, m, 40).

44 LINDA C. GARRO

He went on to talk about one of his friends who quit drinking and no longer has diabetes. He thought that he would no longer have to worry about diabetes if he could keep his drinking under control.

Adoption of the biomedical teaching model does not preclude the use of Anishinaabe remedies. The aforementioned m a n (D5) who linked drinking with diabetes had taken a herbal remedy in the past but he stopped because: "The people who gave me the medicine told me to quit using it because I was always drinking on weekends. So I quit. That medicine doesn't help you unless you quit drinking." He stated that taking the remedy was essentially the same as taking pills or insulin, as did several others in the study.

Some additional support for the biomedical teach- ing perspective can be found in the results of a classification task given to an independent sample of 65 community members. Individuals were read a list of illness terms and asked to select a category label which best described each illness. Although for dia- betes the majority (74%) selected the label 'white m a n ' s sickness' as the best descriptor, about a third chose a general label for illness (31%; total is > 100% because some individuals selected both labels) often explaining how diabetes resulted from individuals eating or drinking too much of certain things.

As pointed out earlier, the contaminated food and biomedical teachings models represent the extremes and by themselves, they do not represent the majority position. The remaining 25 individuals are 'mixed,' as they reflect aspects of both models, drawing on the teachings of biomedical practitioners as well as shared understandings about the nature of 'white m a n ' s sicknesses.' It was not u n c o m m o n for someone to refer to what a doctor said about being overweight and then go on to talk about the harmful effects of canned foods. One woman, after going into detail about the way additives and chemical sprays were to blame for diabetes, commented that an acquaintance was "sure giving herself a hard time" because she was overweight and drank too much. She later com- mented: "The ones who drink, it never leaves them, it never leaves them, they say. That is where it comes from" (D34, f, 41). Below are two pairs of contrasting quotes from two individuals illustrating how people move between different ideas about the nature of diabetes:

I always tell my kids, you know, sometimes they drink so much cold stuff• I tell them, don't drink so much of that maybe you'll get diabetes too, if you drink too much. I was never one to drink soft drinks. The only thing I used to like was pastries (D22, f, 28).

The white man ate different• My grandmother is over 90 years old and she never touched canned food. She's never smoked and she's never touched a drop of liquor and she's still healthy. She eats wild game all the time and she says the worst thing to eat is canned food. She believes the can is poison (D22, f, 28).

Maybe it is from what someone eats, they do it to themselves • . . It is their own fault because of what they eat (DI6, f, 56).

I never heard of someone to have it before. They never ate the food we eat today. Lots of people eat canned stuff and before they used to eat wild foods. Before Indians were never sick. Like today there is a lot of sickness like cancer. They never had it before (DI6, f, 56).

Although explanations based on individual actions are often given, doubts about such explanations are sometimes expressed. One woman said her diabetes probably came from eating too many sweets, even though she only recalled indulging in too many sweets during the Christmas season. Then she noted: "But some people I know eat lots of candy, like chocolates, and they d o n ' t get sugar diabetes" (D2, f, 61). Another woman who, early in the interview, mentioned that she must have eaten too many foods high in sugar, later pointed to her husband and wryly commented how he eats the candy bars and she got sugar: "I was never that fond of sweets. I don't know how I got that" (DI 1, f, 62). Both of these women also talked about the contamination of contemporary foods as a cause of diabetes.

The acceptance of both perspectives was common and is reflected in the following brief recapitulation of some of the findings. In the explanatory model interview, obesity or eating or drinking too much of given items was mentioned by all but five as a cause of their diabetes. These five were the strongest advo- cates of the contaminated food model• There was also high agreement with true-false questions that some- one could develop diabetes by eating too much sugar, from drinking too much alcohol and being over- weight. Remarks about the change away from a diet based on wild foods and its relationship to the prevalence of diabetes were made by only ten individ- uals in the explanatory model interview• However, additional comments made in response to true-false questions brought the total to 27. At times there was little elaboration of this concept, and people's re- marks simply concerned the unhealthy nature of contemporary foods or their inferiority to wild foods. There was high consensus for statements claiming that the Anishinaabeg did not have diabetes before white men arrived and that diabetes could come from substances added to foods. Clearly, most of those interviewed did not perceive an overt contradiction between the two models and drew on both in explain- ing diabetes•

CONCLUDING REMARKS

Although diabetes did not become a significant health problem within the community until recently, understandings about the causes of diabetes do not simply reflect health education messages and the teachings of biomedical practitioners• Certainly, input from physicians, nurses and others greatly influence how people talk about diabetes, but because such input is ahistorical and oriented to the individ- ual, it fails to account for the emergence of diabetes in this community• Like other illnesses, such as

Explanations of diabetes in an Anishinaabe (Ojibway) community 45

tuberculosis and cancer, diabetes is viewed as yet another consequence of the disruption and destruc- tion of the Anishinaabe way of life which has been ongoing since first contact with Europeans.

Other researchers have noted that aboriginal peoples ascribe illness to European contact. Support for the generalizability of at least some of the findings presented here can be found in the attribution of urban Ojibway and Cree that diabetes is "due to white m a n ' s food and environment" [20, p. 268]. The T o h o n o O ' o d h a m (Papago) classify diabetes, cancer, and most infections as belonging to the category of "white m a n ' s disease" [21, p. 710]. F o r the Zuni, Camazine [22, p. 77] reports that diabetes is con- sidered to be a 'new' disease that is not known about by traditional healers. Among Siouan speakers, a n u m b e r of illnesses are reported to be of this type [23-27]. Lang's [25] description of how the Dakota 'make sense' of diabetes parallel the findings reported here, most notably in the diverse ways individuals talked about the etiology of diabetes. In their ac- counts, biomedical explanations for diabetes are in- terwoven with statements about diabetes as a 'new' illness occurring because of changes in the kinds of foods eaten.

The attempt to deal with the complex set of meanings associated with diabetes may contribute to the reported success of a story used by the Native Diabetes Program in Toronto [20]. The narrative, developed in collaboration with Native leaders and a nurse anthropologist, draws on cultural understand- ings about diabetes to suggest solutions to individuals in dealing with diabetes. The story presents a person- ified character of the diabetes stranger, who shares similarities with the influenza stranger and the tuber- culosis stranger who visited Indian people earlier in this century and who are responsible for many deaths. In this way, the story places diabetes in a social and historical context with the stranger per- haps seen as representing "events impinging on the entire Native community and beyond its control" [20, p. 268]. As opposed to this external control, the teachings of the story, which accommodates prin- ciples of nutrition and medicine, can be seen as a metaphor of gaining power over the personification of diabetes through providing a way to balanced living based on the individual increasing self control over his or her life. The emphasis on control, rather than blame, is essential to the story's meaning.

In contrast, the message conveyed by biomedical practitioners to those interviewed here is primarily one of individual responsibility for diabetes. By blam- ing the individual, a biomedical perspective excludes the broader social context of the disease. Yet, such an explanation does not ring true for many of those interviewed, who, over time, have observed increases in the n u m b e r of community members diagnosed with diabetes. It also fails to acknowledge the litera- ture stressing the importance of social determinants of disease [13, 28, 29]. As ways are developed for

responding to diabetes among aboriginal peoples, changes in lifestyle as a result of the encroachment of the larger Canadian society cannot be ignored. Politi- cal, social and economic circumstances contribute to the poor health statistics. While many involved in the provision of health care would have no difficulty acknowledging this, there is a need for health pro- fessionals to broaden the message of individual responsibility to recognize societal responsibility and to work towards solutions that incorporate such

factors.

Acknowledgements--I thank Robert Whitmore for com- ments on an earlier version of this paper. Three anonymous reviewers provided helpful suggestions for which I am grateful. The research on which this paper is based was supported by grants from the National Health Research and Development Program (6607-1402-43 and 6607-1527-61) and the Manitoba Health Research Council (No. 6278) and by a Health Research Scholar career award from the National Health Research and Development Program.

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