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

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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 …