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Ethnic differences in perceptions of body size in middle-aged European, Maori and Paci®c People living in New Zealand

PA Metcalf 1,2*, RKR Scragg2, P Willoughby3, S Finau4 and D Tipene-Leach4

1Department of Statistics, University of Auckland, Private Bag 92019, Auckland, New Zealand; 2Department of Community Health, University of Auckland, Private Bag 92019, Auckland, New Zealand; 3Telstra New Zealand, PO Box 963, Auckland, New Zealand; and 4Department of Maori and Paci®c Health, University of Auckland, Private Bag 92019, Auckland, New Zealand

OBJECTIVES: The aim of this study was to compare perceptions of body size in European, Maori and Paci®c Islands people with measured body mass index (BMI), waist-to-hip ratio and change in BMI since age 21 y. Socio-demographic factors that in¯uenced perceptions of body size were also investigated. DESIGN: Cross-sectional survey. METHODS: Participants were 5554 workers, aged � 40 y, recruited from companies in New Zealand during 1988 ± 1990. RESULTS: Prevalences of BMI> 25 kg=m2 were: Europeans, 64.7% men, 47.2% women; Maori, 93.2% men, 80.6% women; and Paci®c Islanders, 94.1% men, 92.9% women. Similarly, prevalences of BMI > 30 kg=m2 were: Europeans, 14.4% men, 14.6% women; Maori, 55.0% men, 41.9% women; and Paci®c Islanders, 55.1% men, 71.7% women. At each perception of body size category, Maori and Paci®c Islands men and women had a higher BMI than European men and women, respectively. BMI increased with increasing perception of body size in all gender and ethnic groups. Since age 21, increases in BMI were highest in Paci®c Islands people and increased with increasing perceptions of body size category in all ethnic and gender groups. BMI adjusted odds (95% CI) of being in a lower perception category for body size were 1.70 (1.38 ± 2.12) in Maori and 8.99 (7.30 ± 11.09) in Paci®c people compared to Europeans, 1.27 (1.13 ± 1.42) times higher for people with no tertiary education, 1.41 (1.25 ± 1.59) times higher in people with low socioeconomic status, and 0.94 (0.92 ± 0.95) for change in BMI since age 21. CONCLUSION: Nutritional programs aimed at reducing levels of obesity should be ethnic-speci®c, addressing food and health in the context of their culture, and also take into account the socioeconomic status of the group. On the population level, obesity reduction programs may be more bene®cial if they are aimed at the maintenance of weight at age 21. InternationalJournal of Obesity (2000) 24, 593±599

Keywords: body mass index; perception of body size; socioeconomic status; education; Polynesia


Obesity is associated with higher all-cause mortality1

and an increased risk of diseases,2 such as coronary heart disease,3 ± 5 hypertension,6,7 non-insulin depen- dent diabetes,8 ± 10 and some cancers.2 Reduction of the disease burden of obesity in the population will be assisted by the identi®cation of factors that in¯uence body weight which can be used for the development of intervention programs.

Western culture has a prevailing perception that a low body weight is attractive.11 Cultural and social factors such as the diet and fashion industries play an important role in shaping the idealized ®gure.12 Other cultures have different value systems, for example Paci®c Islands people, who ®nd a fuller ®gured body

more attractive13,14 as it represents high status, power, authority and wealth.15 Compared with Whites living in the USA, the prevalence of obesity is greater amongst African-Americans who pay less attention to weight reduction and dieting because they are less concerned about being overweight.16 Both cultural and social factors in¯uence dietary habits. BMI has been shown to be lower with increasing levels of education and socioeconomic status.17 ± 20

The aim of this study was to compare perceptions of body size in European, Maori and Paci®c Islands people with measured body mass index (BMI), waist- to-hip ratio and change in BMI since age 21. The roles of socioeconomic status, and level of education on perception of body size were also examined.


Between May 1988 and April 1990, 5678 workers aged 40 y and over were interviewed at 41 work sites in Auckland and ®ve work sites in Tokoroa (response

*Correspondence: PA Metcalf, Department of Statistics, University of Auckland, Private Bag 92019, Auckland, New Zealand. E-mail: metcalf@stat.auckland.ac.nz. Received 30 June 1999; revised 21 October 1999; accepted 3 December 1999

International Journal of Obesity (2000) 24, 593±599 ß 2000 Macmillan Publishers Ltd All rights reserved 0307±0565/00 $15.00 www.nature.com/ijo

rate 67%). The main criterion used to select compa- nies was size (more than 50 staff of all ages). Within Auckland, emphasis was placed on work sites in south and central Auckland to ensure suf®cient numbers of Maori and Paci®c Island participants. Workers repre- sented the following industries classi®ed according to the New Zealand Standard Industrial Classi®cation:21

agricultural services, hunting, forestry and ®shing, 3; manufacturing, 26; electricity, gas and water, 1; trans- port, storage and communications, 4; banking and ®nancial services, 1; and community, social and personal services, 11.

All participants completed a self-administered questionnaire regarding socio-demographic status. Ethnicity was self-de®ned and 100 Asians excluded because of their small numbers. Paci®c Islands people comprised: 53.9% Samoans; 26.6% Cook Islanders; 10.5% Tongans; 6.7% Niueans; and 2.3% other Paci- ®c Islanders. Participants were asked to `describe your present weight’ and to circle one of the following: 1, `Very underweight’ 2, `Moderately underweight’ 3, `Slightly underweight’ 4, `Just the right weight’ 5, `Slightly overweight’ 6, `Moderately overweight’ 7, `Very overweight’. Responses in the ®rst three cate- gories were combined as `Underweight’ because of small numbers, and responses renumbered on a scale of 1 ± 5. Of the 5578 remaining participants, 5554 (99.6%) answered this question. Participants were also asked `Do you keep your weight at the right level?’.

Weight was measured to the nearest 0.2 kg, height to the nearest 0.5 cm, and waist and hips to the nearest 0.5 cm by trained interviewers. BMI was calculated as weight in kg divided by height in m2. Participants were asked to record their weight at age 21. BMI at age 21 was calculated and the difference (BMI at interview 7BMI at age 21) was also calculated.

Education was classi®ed as no tertiary education versus tertiary education (Trade School, Technical Institute, Professional Institution, or University). Socioeconomic status was classi®ed according to the Elley ± Irving occupation based scale22 using the higher of the participant or their partner (1ˆ highest to 6ˆ lowest). This scale was categorised as low socioeconomic status (levels 4 ± 6) vs high socioeco- nomic status (levels 1 ± 3).

Statistical analyses were carried out using the SAS statistical package.23 Figures were generated using the Splus statistical package.24 Categorical variables were compared using the chi-squared test. For continuous variables, analysis of covariance was used to ex- amine the relationship with perception of body size categories after adjusting for potential confounding variables. Geometric mean body mass index was calculated as the loge of body mass index and a tolerance factor as exp(1.96�s.e.). A 95% con®dence interval can be calculated as mean=tolerance factor to mean�tolerance factor. A proportional odds model23 was built to examine socio-demographic factors that in¯uenced perception of body size and the 95% con®dence limits for the odds ratios were based on the pro®le likelihood. A proportional odds model ®ts a common slope cumulative model, which is a parallel lines regression model based on the cumulative prob- abilities. The cumulative logit model has the form

Pr ‰ y � i j xŠ ˆ exp…ai ‡ bT x†=…1‡ exp…ai ‡ bT x††; 1 � i � k

where a1, . . . , ak are k intercept parameters, and b is the vector of slope parameters. Study numbers may vary due to missing information.


The socio-demographic characteristics of the study population are shown in Table 1. Overall, there were more males than females in each ethnic group. How- ever, there was a lower proportion of males in the Paci®c group compared to the European and Maori groups. Household income, no tertiary education and Elley ± Irving socioeconomic status (EISES) were lowest in Maori and Paci®c Islands people. Mean age was highest in Europeans. Mean age and gender adjusted body mass index (BMI), change in BMI since age 21, and waist-to-hip ratio were signi®cantly higher in Maori and Paci®c Islands people compared with Europeans.

Table 1 Socioeconomic-demographic characteristics of the study population by ethnic group. Mean (s.e.) or percentage by ethnic group

European Maori Pacific P-value

n 4464 433 657 Male gender 74.1% 71.4% 61.3% <0.001 Household income, <$30,000 22.7% 46.2% 67.9% <0.001 No tertiary education 41.2% 77.7% 81.9% <0.001 Low EISES (>3) 31.1% 63.3% 79.9% <0.001 Agea (y) 49.1 (0.09) 48.3 (0.30)* 47.4 (0.24)** BMIb,c (kg=m2) 26.0 (1.004) 30.3 (1.013)** 31.9 (1.011)** D BMIc since age 21 3.5 (0.06) 5.5 (0.19)** 8.1 (0.15)** Waist-to-hip ratioc 0.88 (0.001) 0.90 (0.004)** 0.91 (0.003)**

*0.01<P< ˆ0.001; **P<0.001, Maori and Paci®c people compared to Europeans. EISESˆElley ± Irving socio-economic scale (1ˆhigh, 6ˆ low); BMIˆ Body mass index; Dˆ change in. aAdjusted for gender; bGeometric mean (tolerance factor); c Adjusted for age and gender.

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Table 2 shows the percentage of participants in each category of perception of body size by ethnic group. There were ethnic differences in perception of body size (P< 0.001), with lower proportions of Maori describing themselves as `Underweight’ or `Just the right weight’. The highest proportions of Europeans and Maori described themselves as `Slightly overweight’, while the highest proportions of Paci®c Islands people described themselves as `Just the right weight’ or `Slightly overweight’.

Prevalences of overweight (BMI 25 ± 30 kg=m2) were Europeans: 50.3% men, 32.6% women; Maori: 38.2% men, 38.7% women; and Paci®c Islanders: 39.0% men, 21.2% women. Similarly, prevalences of obesity (BMI> 30 kg=m2) were Europeans: 14.4% men, 14.6% women; Maori: 55.0% men, 41.9% women; and Paci®c Islanders: 55.1% men, 71.7% women.

The percentages of participants who were over- weight and obese in each perception of body weight category by ethnic group are shown in Table 3. Higher percentages of Europeans were overweight in the `Slightly overweight’ and `Moderately overweight’ categories of perception of body size, but a lower percentage were obese in these perception categories compared with Maori and Paci®c Islands participants. In contrast, higher proportions of Maori and Paci®c Islands participants were overweight or obese in the `Underweight’ and `Right Weight’ perception cate- gories compared to Europeans.

At each perception of body size category, Maori and Paci®c Islands men (Figure 1A) and women (Figure 1B) had a higher BMI than European men and women, respectively. In general, BMI levels increased with increasing perception of body size in all gender and ethnic groups. There were also ethnic differences in waist-to-hip ratios in the same direction as for BMI in men and women, however, the associa-

tion with perception of body size was less marked (data not shown).

Increases in BMI since age 21 were highest in Paci®c Islands men (Figure 2A) and women (Figure 2B) compared to Maori and Europeans and also showed an association of increasing change in BMI since age 21 with increasing perceptions of body size categories.

More Europeans in the `Right weight’ category said they kept their weight at the right level than Maori and Paci®c Islands people (Figure 3). More Paci®c Islands and European people in the `Slightly overweight’

Table 2 Percentage of participants in each perception of body weight category by ethnic group

European Maori Pacific

n 4464 433 657 `Underweight’ 7.5 3.7 5.3 `Right weight’ 23.1 18.7 33.9 `Slightly overweight’ 43.8 35.6 30.6 `Moderately overweight’ 20.0 20.8 13.6 `Very overweight’ 5.8 21.3 16.6

Chi-square P-value< 0.001.

Table 3 Percentage of participants overweight (BMI 25 ± 30 kg=m2) and obese (BMI >30 kg=m2) in each perception of body weight category by ethnic group

European Maori Pacific

n 4464 433 657 Perception Overweight Obese Overweight Obese Overweight Obese `Underweight’ 11.4% 5.4% 31.3% 12.5% 45.7% 37.1% `Right weight’ 24.8% 0.8% 64.2% 11.1% 51.1% 37.7% `Slightly overweight’ 58.7% 7.8% 48.7% 43.5% 29.4% 66.2% `Moderately overweight’ 61.1% 30.8% 24.4% 72.2% 19.1% 80.9% `Very overweight’ 24.9% 73.9% 13.0% 85.9% 4.6% 93.6%

Figure 1 Geometric mean BMI by perception of body size category in 4110 men (A) and 1568 women (B). Bars representing 95% con®dence limits are one-sided when they overlap.

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International Journal of Obesity

category said they kept their weight at the right level, but fewer Europeans in the `Moderately overweight’ and `Very overweight’ categories said they kept their weight at the right level.

For both educational and socioeconomic groups, there was a trend (P< 0.001) towards the lower strata having more participants who perceived that their body sizes were `Underweight’ or the `Right weight’, less reported that they were `Slightly’ or `Moderately’ overweight, but more perceived being `Very overweight’ (Table 4). These results suggest that different socioeconomic strata have different views as to their perceptions of body size.

Mean changes in BMI since age 21 were greatest in the `Very overweight’ low and high education groups and low and high socioeconomic status (Table 5). There was an increasing gain in weight from the `Underweight’ to `Very overweight’ perception cate- gories in all education and socioeconomic status groups. Participants with low education and low socioeconomic status in the `Underweight’ group had put on signi®cantly more weight since age 21 compared to their high education and socioeconomic status groups. Similarly, participants with low educa- tion and low socioeconomic status had put on more weight since age 21 in the `Slightly overweight’ and `Moderately overweight’ groups.

A proportional odds model was built to identify factors in¯uencing perception of body size after adjusting for gender and BMI (Table 6). Age was not a signi®cant predictor of perception of body size and was therefore excluded from the model. BMI was more strongly related to perception of body size than waist-to-hip ratio, which was excluded from the model due to multicollinearity. BMI was centred and entered as a quadratic due to the non-linear relationship with perception of body size. Holding all other variables in the model constant, the odds of being in a lower perception of body size was almost 1.70 times higher in Maori compared to Europeans, 8.99 times higher for Paci®c people compared to Europeans, 1.27 times higher for people with no tertiary education compared with those who had tertiary education, 1.41 times higher for people in the lower socio-economic strata, and only 0.94 fold for each kg=m2 increase in BMI since age 21. The latter result suggests that those people gaining the most weight since age 21 appear to overestimate their body size.

Figure 2 Mean change in BMI since age 21 y by perception of body size category in 4000 men (A) and 1519 women (B). Bars representing 95% con®dence limits are one-sided when they overlap.

Figure 3 Proportions of participants in each perception cate- gory, by ethnic group, who `keep their weight at the right level’. Signi®cant differences are noted.

Table 4 Percentage of participants in each perception of body weight category by education and socioeconomic status group

Education Group Socioeconomic status

Low High Low High

n 2767 2874 2237 3417 `Underweight’ 7.8 6.1 6.8 7.0 `Right weight’ 24.1 23.9 26.2 22.6 `Slightly overweight’ 38.8 44.2 38.3 43.7 `Moderately overweight’ 19.1 19.4 18.5 19.7 `Very overweight’ 10.2 6.4 10.2 7.0

P<0.001 P<0.001

Column totals sum to 100%.

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These cross-sectional data demonstrate that percep- tion of body size varies between ethnic groups, level of education and socioeconomic status. In particular, Maori and Paci®c people have a higher BMI than Europeans at all categories of perception of body size. Further, weight gains since age 21 were highest in Maori and Paci®c people. More Paci®c Islands and Maori people in the `Moderately overweight’ and `Very overweight’ perception categories thought that they kept their weight at the right level. This study is unique as it has much larger numbers, examines an older age group and contains a large proportion of males compared to previous studies.25,26

Age differences in body perception have been described previously27 and suggest that a gradual reduction in ideal body size is being experienced in Western societies. Here, there was no signi®cant effect of age on perception of body size, which may have been due to the relatively narrow age range of participants who were middle-aged, or that age differ- ences may be less notable these days.

A study of Maori health over the period 1955 ± 197528 found age-standardized rates of obesity (de®ned as 120% of ideal body weight) were 37% for Maori males and 57% for Maori females. This compared with 7% and 24% for non-Maori males and females, respectively. Although these are different measurements, and our sample may not be as repre- sentative, the ®ndings of the current study were higher

than these results. Further, there was a trend towards a higher change in BMI since age 21 in all ethnic groups, suggesting that weight increases had occurred prior to or during middle age.

Obesity in Paci®c people living in New Zealand has been acknowledged as playing a pivotal role in the development of coronary heart disease, non-insulin dependent diabetes mellitus and hypertension29 in `modernizing’ Paci®c people. Paci®c people are also at higher risk of developing obesity-related diseases than are Europeans.29 However, consistent with these results were our ®ndings that many Paci®c people in New Zealand are overweight, and that Paci®c people in New Zealand tend to develop obesity in middle to later years more readily than other New Zealanders. Feasts play an important social role in the lives of Paci®c peoples as food, social obligations and tradi- tion are closely linked.30 Therefore, it has been recommended that nutritional programs address food and health in the context of their society.30


The appropriateness of Caucasian-based weight ranges for population groups in the Paci®c has been questioned.31 One suggestion has been to raise these ranges to include the Caucasian overweight cate- gory.31 At any given level of BMI, Cook Islanders are leaner than Australians32 and have less body fat for a given BMI.26 For example, a 25 y old Cook Islands woman with a BMI of 22 had 13 kg of fat, whereas a young Australian woman with the same BMI had 18 kg of fat. Young Polynesian women also have a lower resting metabolic rate33 and reduced energy expenditure34 compared to European women. Reduced energy expenditure and excessive energy intake have been hypothesized as causing obesity.34

A further study of these same young women found that a BMI of 30 kg=m2 for the New Zealand Eur- opean group corresponded to the same percentage body fat of 34 kg=m2 in Polynesians.35

A further limitation is the accuracy with which weight at age 21 is reported. It is likely that over- estimates of weight at age 21 were reported, thus dampening the change in BMI since age 21 ®ndings.

Table 5 Mean (s.e.) change in BMI since age 21 in kg=m2 adjusted for age, gender, and ethnic group by education and socioeconomic status group

Education group Socioeconomic status

Low High Low High

n 2767 2874 2237 3417 `Underweight’ 2.42 (0.23) 1.38 (0.26)* 2.70 (0.28) 1.48 (0.22)** `Right weight’ 2.39 (0.14) 2.06 (0.13) 2.29 (0.15) 2.17 (0.12) `Slightly overweight’ 4.34 (0.11) 3.77 (0.10)** 4.51 (0.12) 3.75 (0.09)** `Moderately overweight’ 6.11 (0.15) 5.48 (0.15)* 6.36 (0.17) 5.44 (0.13)** `Very overweight’ 8.85 (0.21) 8.60 (0.25) 8.78 (0.24) 8.73 (0.22)

*0.001; P<0.01; **P<0.001.

Table 6 Sociodemographic variables in¯uencing perception of body image using a proportional odds model after adjusting for BMI

Variable Estimate s.e. Odds ratio 95%CI P-value

D BMI since age 21 7 0.07 0.01 0.94 0.92 ± 0.95 < 0.0001 Male gender 1.55 0.07 4.70 4.14 ± 5.35 < 0.0001 Maori 0.54 0.11 1.70 1.38 ± 2.12 < 0.0001 Paci®c 2.20 0.10 8.99 7.30 ± 11.09 < 0.0001 Low education 0.23 0.06 1.27 1.13 ± 1.42 < 0.0001 Low EISES 0.34 0.06 1.41 1.25 ± 1.59 < 0.0001

Concordance 81.4%; discordance 15.5%; tied 3.1%. EISESˆElley ± Irving socioeconomic status index. CIˆ con®dence interval.

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This study has shown that Maori and Paci®c people perceive themselves as having a smaller body size compared to Europeans, even after controlling for BMI. It also shows that Maori and Paci®c Island people in the `Moderately’ and `Very overweight’ perception categories think that they keep their weight at the right level. This suggests that cultural factors in¯uence perceptions of the ideal body size. This was con®rmed by the ®ndings that at each perception of body size category Maori and Paci®c men had higher mean BMI compared with European men. Paci®c females were also found to have a higher mean BMI at each perception of body size category compared to Maori and European. A multivariate model adjusted for BMI showed that Polynesian ethnicity, low level of education and low socio-eco- nomic status were all associated with a higher odds of being in a lower perception of body size category, but that larger changes in weight since age 21 were associated with a higher perception of body size. These results suggest that the development of Nutri- tional Programmes in Maori and Paci®c people need, in addition to scienti®c nutritional principals, to address food and health in the context of their society, and to address education level, and socioeconomic status of the targeted groups. On the population level, obesity reduction programs may be more bene®cial if they are aimed at the maintenance of weight at age 21.


Major funding was provided by the New Zealand Medical Research Council and the Medical Research Council Diabetes Task Force. Supplementary funds were received from the National Kidney Foundation of New Zealand and Lotteries Medical Research. Dr P Metcalf and this study were funded by the Health Research Council of New Zealand.

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Ethnic differences in perceptions of body size PA Metcalf et al


International Journal of Obesity

  • Ethnic differences in perceptions of body size in middle-aged European, Maori and Pacific People living in New Zealand
    • Introduction
    • Methods
    • Results
    • Discussion
      • Limitations
    • Conclusion
    • Acknowledgements
    • References

Dodge, R., Daly, A., Huyton, J., & Sanders, L. (2012). The challenge of defining wellbeing. International

Journal of Wellbeing, 2(3), 222-235. doi:10.5502/ijw.v2i3.4

Rachel Dodge

Cardiff Metropolitan University


Copyright belongs to the author(s)




The challenge of defining wellbeing

Rachel Dodge · Annette P. Daly · Jan Huyton · Lalage D. Sanders

Abstract: Wellbeing is a growing area of research, yet the question of how it should be defined

remains unanswered. This multi-disciplinary review explores past attempts to define wellbeing

and provides an overview of the main theoretical perspectives, from the work of Aristotle to the

present day. The article argues that many attempts at expressing its nature have focused purely

on dimensions of wellbeing, rather than on definition. Among these theoretical perspectives, we

highlight the pertinence of dynamic equilibrium theory of wellbeing (Headey & Wearing, 1989),

the effect of life challenges on homeostasis (Cummins, 2010) and the lifespan model of

development (Hendry & Kloep, 2002). Consequently, we conclude that it would be appropriate

for a new definition of wellbeing to centre on a state of equilibrium or balance that can be

affected by life events or challenges. The article closes by proposing this new definition, which

we believe to be simple, universal in application, optimistic and a basis for measurement. This

definition conveys the multi-faceted nature of wellbeing and can help individuals and policy

makers move forward in their understanding of this popular term.

Keywords: definition, equilibrium, challenges, resources

1. Introduction

Research in wellbeing has been growing in recent decades (e.g., Diener, Suh, Lucas, & Smith,

1999; Kahneman, Diener, & Schwarz, 1999; Keyes, Schmotkin, & Ryff, 2002; Stratham & Chase,

2010; Seligman, 2011). However, very early on in the research Ryff and Keyes (1995) identified

that ‚the absence of theory-based formulations of well-being is puzzling‛ (pp. 719–720). The

question of how wellbeing should be defined (or spelt) still remains largely unresolved, which

‚has given rise to blurred and overly broad definitions of wellbeing‛ (Forgeard, Jayawickreme,

Kern, & Seligman 2011, p. 81). This deficit can be traced back as far as Ryff (1989a), who

believed that ‚there has been particular neglect < *in+ the task of defining the essential features

of psychological wellbeing‛ (p. 1069). Indeed, Thomas (2009) argued that wellbeing is

‚intangible, difficult to define and even harder to measure‛ (p. 11).

A theme that will run through this paper is the difference between the ‘description’ of a

construct and its ‘definition’. As interest in the measurement of wellbeing grows, there is a

greater necessity to be clear about what is being measured, and how the resulting data should

be interpreted, in order to undertake a fair and valid assessment. Therefore, any new definition

must go beyond an account or description of wellbeing itself, and be able to make a clear and

definite statement of the exact meaning of the term. Consequently, the aim of this paper is to

propose a definition of what constitutes wellbeing: ‚a complex, multi-faceted construct that has

continued to elude researchers’ attempts to define and measure‛ (Pollard & Lee, 2003, p. 60).org/licenses/by-nc-nd/3.0/”>http://creativecommons.org/licenses/by-nc-nd/3.0/http://creativecommons.org/licenses/by-nc-nd/3.0/http://creativecommons.org/licenses/by-nc-nd/3.0/http://creativecommons.org/licenses/by-nc-nd/3.0/http://creativecommons.org/licenses/by-nc-nd/3.0/http://creativecommons.org/licenses/by-nc-nd/3.0/

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Dodge, Daly, Huyton, & Sanders

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2. The historical background to wellbeing research

Knowing the historical background to the study of wellbeing is necessary to the definition of

wellbeing. Two approaches emerged: the hedonic tradition, which accentuated constructs such

as happiness, positive affect, low negative affect, and satisfaction with life (e.g., Bradburn, 1969;

Diener, 1984; Kahneman, Diener, & Schwarz, 1999; Lyubomirsky & Lepper, 1999); and the

eudaimonic tradition, which highlighted positive psychological functioning and human

development (e.g., Rogers, 1961; Ryff, 1989a; 1989b; Waterman, 1993). However, despite the

differences in approach, most researchers now believe that wellbeing is a multi-dimensional

construct (e.g., Diener, 2009; Michaelson, Abdallah, Steuer, Thompson, & Marks, 2009; Stiglitz,

Sen, & Fitoussi 2009). Consequently, the diversity of dimensions has created a ‚confusing and

contradictory research base‛ (Pollard and Lee, 2003, p. 2).

An early attempt to define wellbeing was Bradburn’s (1969) classic research on

psychological wellbeing. His work marked a move away from the diagnosis of psychiatric

cases to the study of psychological reactions of ordinary people in their daily lives. His

discussion stemmed from his interest in how individuals coped with the daily difficulties that

they faced. Bradburn highlighted how psychological wellbeing (which he also referred to as

happiness) was the variable that ‚stands out as being of primary importance‛ (p. 6). He linked

this to Aristotle’s idea of eudaimonia, which is now more commonly translated as wellbeing.

Aristotle believed this to be the overarching goal of all human actions. The majority of

Bradburn’s research focused on the distinction between positive and negative affect. His model

specified that:

an individual will be high in psychological well-being in the degree to which he

has an excess of positive over negative affect and will be low in well-being in the

degree to which negative affect predominates over positive (Bradburn, 1969, p.


3. What constitutes wellbeing?

Although Ryff (1989a) criticised Bradburn’s work for not defining the basic structure of

psychological wellbeing, an emphasis on positive and negative affect has been central to the

work of Diener and Suh (1997). They believed that:

subjective well-being consists of three interrelated components: life satisfaction,

pleasant affect, and unpleasant affect. Affect refers to pleasant and unpleasant

moods and emotions, whereas life satisfaction refers to a cognitive sense of

satisfaction with life (Diener & Suh, 1997, p. 200)

Headey and colleagues (Headey, Holmstrom, & Wearing, 1984a; 1984b; Headey, 2006) picked

up on the need for positive and negative affects to be seen as distinct dimensions, rather than

opposite ends of the same continuum (Bradburn, 1969) as they are ‚only moderately negatively

correlated‛ (Headey, 2006, p. 2). This was more recently supported by Lee and Ogozoglu (2007)

and Singh and Duggal Jha (2008).

Ryff’s early work (Ryff, 1989a) identified aspects that constitute wellbeing: autonomy;

environmental mastery; positive relationships with others; purpose in life; realisation of

potential and self-acceptance. More recent research has placed different emphases on what

wellbeing is: ability to fulfil goals (Foresight Mental Capital and Wellbeing Project, 2008);

happiness (Pollard & Lee, 2003) and life satisfaction (Diener & Suh, 1997; Seligman, 2002a).

However, again, this highlights the problem that researchers have focused on dimensions or

descriptions of wellbeing rather than on definitions (Christopher, 1999).

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Over 30 years ago, Shin and Johnson (1978) seemed to move closer to defining wellbeing by

stating that it is ‚a global assessment of a person’s quality of life according to his own chosen

criteria‛ (p. 478) and this judgement is still reflected in today’s literature (Zikmund, 2003; Rees,

Goswami, & Bradshaw 2010; Stratham & Chase, 2010). But what, exactly, is ‚quality of life‛?

The World Health Organization defined quality of life as:

an individual’s perception of their position in life in the context of the culture

and value systems in which they live and in relation to their goals, expectations,

standards and concerns. It is a broad ranging concept affected in a complex way

by the person’s physical health, psychological state, personal beliefs, social

relationships and their relationship to salient features of their environment

(World Health Organization, 1997)

This emphasis on achieving goals reflects the work of Emerson (1985) and Felce and Perry

(1995), who believed that wellbeing stems from individuals’ perception of their current

situation and their aspirations.

However, a problem with the term ‘quality of life’ is that it is used interchangeably with

‘wellbeing’ in a variety of disciplines. Many believe that this has made the task of defining

wellbeing ‚conceptually muddy‛ (Morrow & Mayall, 2009, p. 221). However, Stratham and

Chase (2010) argue that the term wellbeing has enabled psychologists to ‘de-medicalise’ (p. 5)

the concept of health. Consequently, it is now possible to consider quality of life separately

from ideas of illness. This neatly reflects the seminal work of Herzlich (1973), who placed great

emphasis on the attitude of the individual towards health, very like the current emphasis of

wellbeing research using subjective wellbeing measures. Herzlich explained how health can be

viewed in both a positive and negative light. Firstly, it can be seen as an ‚absence of illness‛ (p.

53). Indeed, she discussed how individuals might not notice health until something affects it.

On the other hand, Herzlich proposed that health can be seen in a positive light ‚as a presence

of which one is fully aware because of one’s feelings of freedom and of bodily and functional

well-being‛ (p. 53).

Another useful point made by Herzlich is how important it is to define ‚what constitutes

normality‛ (p. 55). However, she admitted that normality was very difficult to evaluate. This

difficulty of reaching a definition of normality also reflects the current problem of attempting to

define wellbeing. Herzlich believed just identifying an ‚absence of illness‛ was inadequate in

terms of defining normality. Furthermore, she suggested that ‚some writers have insisted that

it may be futile to try to treat health as a single concept‛ (p. 55). This view is reflected in a

recent article by Forgeard and colleagues (2011), who propose that:

some researchers have preferred to ignore the multifaceted nature of wellbeing

and equate it with one construct (often life satisfaction), leading to the

unfortunate omission of other important aspects of wellbeing (p. 81)

Consequently, it seems that a narrow emphasis on quality of life cannot adequately help us to

define wellbeing. Indeed, it would seem that quality of life appears to be a dimension of

wellbeing rather than an all-embracing definition.

The focus on positive functioning that has attracted increased attention in the past few

years (Duckworth, Steen, & Seligman, 2005; Linley & Joseph, 2004; Linley, Joseph, Harrington,

& Wood, 2006) dates back to William James’ writings on healthy mindedness (James, 1902), and

spans nearly 60 years to the work of Rogers (1961), who discussed wellbeing in terms of ‚the

good life‛ (p. 186). He believed that each individual strived towards becoming a ‚fully

functioning person‛ who is open to experience, is trusting in his/her own organism, and leads

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an increasingly existential life (Rogers, 1961, p. 187–189). His work has partly influenced the

work of Ryff and Singer (2008) in their development of core dimensions of psychological

wellbeing (PWB): self-acceptance; purpose in life; environmental mastery; positive

relationships; personal growth; and autonomy.

An interesting development is the way in which this area of wellbeing has impacted on

clinical psychology. Joseph and Wood (2010) have called for clinical psychology to adopt

measures of positive functioning. This is because they believe that psychiatry has adopted a

restricted view of wellbeing, seeing it as ‚an absence of distress and dysfunction‛ (p. 831).

Therefore, the adoption of positive function would naturally broaden the field. They also

believe that there is a possibility that this new slant on measurement will allow for prediction

and treatment of distress and dysfunction. Research in this area has been undertaken by Keyes

(2002; 2005), who views mental health as a syndrome of wellbeing symptoms. He believes that

mental health is created ‚when an individual exhibits a high level on at least one symptom of

hedonia and just over half the symptoms of eudaimonia, i.e., positive functioning in life‛

(Keyes, 2009, p. 15). In his 2002 research, Keyes asked youths to report the frequency of three

symptoms of emotional wellbeing, four symptoms of psychological wellbeing and five

symptoms of social wellbeing. Keyes made a ‚diagnosis of flourishing‛ if the individual

displayed a third of the emotional symptoms, four of the psychological symptoms and five of

the nine symptoms of positive flourishing ‚almost every day‛ or ‚every day‛ in the past thirty


The work of Keyes has led to the use of the terms ‘flourishing’ and ‘languishing’ as

scientific concepts, rather than as philosophical ideals, as they had been previously presented

(e.g., Griffin, 1986; Sumner, 1996; Hurthouse, 1999; Nussbaum, 2000). Keyes’ work had a direct

influence on the formulation of ‚a well-being manifesto for a flourishing society‛ by Shah and

Marks (2004). This rather uplifting and encouraging document highlights that one of the key

aims of any democratic government should be ‚to promote the good life: a flourishing society,

where citizens are happy, healthy, capable and engaged – in other words with high levels of

well-being‛ (p. 2). The manifesto goes on to clarify what Shah and Marks consider wellbeing to


Well-being is more than just happiness. As well as feeling satisfied and happy,

well-being means developing as a person, being fulfilled, and making a

contribution to the community (2004, p. 2)

Unfortunately, again, this appears to be more of a description of wellbeing rather than a


The term ‘flourishing’ has now become synonymous with the positive psychology

movement. Indeed, Gable and Haidt (2005) explain that ‚positive psychology is the study of

the conditions and processes that contribute to the flourishing or optimal functioning of people,

groups, and institutions‛ (p. 104). In a systematic examination of literature, Alkire (2002) noted

39 varying endeavours between 1938 and 2000 to define a ‘flourishing’ life.

The undeniable leader of the positive psychology movement is Martin Seligman. On the

first day of his presidency of the American Psychological Society (APA) in 1998 he stated that:

I realized that my profession was half-baked. It wasn’t enough for us to nullify

disabling conditions and get to zero. We needed to ask, what are the enabling

conditions that make human beings flourish? How do we get from zero to plus

five? (Seligman, 1998, cited in Wallis, 2005, online)

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More than ten years on, Seligman has recently published his latest book entitled Flourish

(Seligman, 2011), in which he outlines his new ‘dynamic’ concept of wellbeing, which moves

away from theories based purely on happiness. The rationale behind this welcome departure

from a now rather over-used term is because, according to Seligman (2011), the notion of

‘happiness’ is an awkward construct that hides the true, complex, nature of human flourishing.

He clearly states the rationale behind this change in direction:

I used to think that the topic of positive psychology was happiness< I now

think that the topic of positive psychology is well-being, that the gold standard

for measuring well-being is flourishing, and that the goal of positive psychology

is to increase flourishing. (Seligman, 2011, p. 13)

Flourish discusses his theory with great clarity, but in terms of resolving the debate on defining

wellbeing, it is disappointing. His 24-page chapter entitled ‘What is Well-being?’ fails to

achieve its aim. In fact, Seligman states:

Well-being theory denies that the topic of positive psychology is a real thing;

rather the topic is a construct – well-being – which in turn has several

measurable elements, each a real thing, each contributing to well-being, but none

defining well-being. (2011, p. 15)

Instead, his new theory of wellbeing concentrates, yet again, on elements of wellbeing which he

believes are a set of building blocks for a flourishing life: Positive Emotion, Engagement,

Relationships, Meaning, and Accomplishment (PERMA).

At this stage, the pursuit of a definition of wellbeing may appear bleak. However, we

disagree with Seligman that wellbeing is a construct. This would imply that wellbeing is ‚not

presently observable or objectively measurable but is assumed to exist because it < gives rise

to measurable phenomena‛ (Reber, 1995, p. 157). From the discussion so far, this obviously is

not true. Instead, it is proposed that wellbeing should be considered to be a state – ‚a condition

of a system in which the essential qualities are relatively stable‛ (Reber, 1995, p. 750).

4. Equilibrium

A theory that supports Reber’s proposal is the dynamic equilibrium theory of wellbeing (now

more often referred to as set-point theory). This was originally proposed 23 years ago by

Headey and Wearing (1989) and suggested links between personality, life events, wellbeing

and illbeing. The theory built on the work of Brickman and Campbell (1971), who had

previously demonstrated that individuals tend to return to a baseline of happiness even after

major life events.

Headey and Wearing continued to research their model (1991; 1992) and believed that ‚for

most people, most of the time, subjective well-being is fairly stable. This is because stock levels,

psychic income flows and subjective well-being are in dynamic equilibrium‛ (1991, p. 49). This

emphasis on equilibrium is not new and reflects, yet again, the work of Herzlich (1973). Her

research emphasised that individuals saw equilibrium not only as a norm but also as a state

that they would like to ‚attain or keep‛ (p. 59). Interestingly, in contrast to Headey and

Wearing’s idea that most individuals have stable wellbeing, Herzlich’s interviewees saw it as a

rare occurrence. However, Herzlich noted how often equilibrium was referred to by her

participants and that it had a wide variety of applications. She found that the word ‚expresses

a whole area of individual experience. It serves, in a way as a distillation of the language of

health‛ (p. 59). She went further to fully explain what equilibrium is, in terms of health:

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Concretely, equilibrium comprises the following themes: physical well-being,

plenty of physical resources; absence of fatigue; psychological well-being and

evenness of temper; freedom of movement and effectiveness in action; good

relations with other people. (Herzlich, 1973, p. 60)

The continued aim of Headey and Wearing’s research has been to ‚understand how people

cope with change and how their levels of well-being are affected‛ (1992, p. 6). They propose

that a change in wellbeing occurs only when, due to external forces, ‚a person deviates from his

or her equilibrium pattern of events‛ (1992, p. 93). Consequently, Headey and Wearing propose

a definition of wellbeing in which wellbeing is shown ‚as depending on prior equilibrium

levels of wellbeing and of life events, and also on recent events‛ (1992, p. 95). This reflects their

framework for analysing subjective wellbeing (SWB), which considers the relationship between

stocks and flows:

Figure 1. Headey & Wearing’s (1991) stocks and flows framework (p. 56)

In this model, Headey and Wearing proposed that differences between individuals in terms of

SWB are due to ‘stable stocks’ (otherwise known as stable personal characteristics). ‚As a result

of stable stocks each person has a level of subjective wellbeing which represents his/her own

‚normal‛ equilibrium level‛ (1991, p. 57). Stocks are drawn upon to deal with specific life

experiences (‘flows’) so that satisfaction is enhanced and distress is diminished. Consequently,

‚it is more appropriate to regard subjective well-being as a fluctuating state rather than a stable

trait‛ (p. 56).

The theory has received much empirical investigation (Ormel & Schaufeli, 1991; Ormel &

Wohlfaryh, 1991; Suh, Diener, & Fujita, 1996). Suh and colleagues (1996) tested the dynamic

equilibrium theory by tracking 222 psychology students (aged 20–21) during a transitional

period of their life (which was their college graduation) and examined the effect of this life

event on their SWB and the time it took these participants to adjust (to return to their state of

equilibrium). Their findings supported the dynamic equilibrium model by demonstrating that

Social background  Sex

 Age

 Socio-economic


Personality  Extraversion

 Neuroticism

 Openness

Social Network  Intimate


 Friendship


Favourable events

which yield


(income gains)

Adverse events which

yield distress

(income loss)

Life Satisfaction

Positive Affect

Negative Affect

Stocks Flows/psychic income Subjective wellbeing

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‚only recent life events influence SWB and that the impact of magnitude drops quickly

afterward‛ (p. 1095). Consequently, in trying to define wellbeing, it is justified to consider the

state of equilibrium as central.

5. Challenges

A more recent extension of this theory has been explored by Cummins (2010). Now the term

‘equilibrium’ has been replaced by ‘homeostasis’; and the term ‘life events’ with the term


Figure 2. Cummins’ Changing Levels of SWB

Cummins’ theory focuses on the strength of a challenge and how this affects the level of SWB.

This includes a derived set-point range (70 to 80 points) that was determined by previous

research undertaken by Cummins (1995; 1998). The emphasis of the model is the role of

homeostasis in defending the set point of SWB. The model may be a little confusing and

complex at first glance. However, it tries to demonstrate different phases denoted by the letters

‘a’ to ‘c’.

 When an individual experiences no challenge, SWB stays at the set-point.

 When an individual experiences mild challenge, the level of SWB will vary slightly

within the set-point range (Phase a)

 Phase b signifies where SWB is prevented from decreasing below the set point, due to

the strong homeostatic defence.

 Phase c signifies a situation where the challenge is too strong for homeostasis to manage.

SWB would now fall sharply.

Consequently, it would seem appropriate that any definition of wellbeing centres on a state of

equilibrium or balance that can be affected by life events or challenges.

Set Homeostasis

point Defensive range







c Upper




Strong homeostatic defense


Threshold SWB

Very strong




challenge Strength of challenging agent

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Dodge, Daly, Huyton, & Sanders

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6. Resources

Linked to challenges is the idea that each individual develops relevant skills or resources to

cope with the trials they face. This balanced rationale between skills and challenges has been

central to Mihaly Csikszentmihalyi’s (1975) concept of ‘flow’ – ‚the state in which people are so

involved in an activity that nothing else seems to matter‛ (2002, p. 4), which in turn leads to

happiness. The original model assumed that enjoyment would happen when the strength of

challenge and skills were both very low as well as when they were both high, as demonstrated

in the following diagram:

Figure 3. Demonstration of the relationship between challenges and skills

(Csikszentmihalyi, 2002, p. 74)

∞ (High)

C h

al le

n g




0 (Low) Skills (High) ∞

However the new model predicts flow only when challenges and skills are relatively in balance

(Csikszentmihalyi, 2002, p. 252).

Hendry and Kloep’s (2002) lifespan model of development also explores the interaction

between life challenges and personal resources. Their theory is based on five key principles:

1) To stimulate development, individuals need challenge.

2) Successful solving of the challenge leads to development.

3) If a challenge is not solved, this will lead to problems in meeting future challenges.

4) The process of solving challenges is ‚an interactional, dialectical process‛ (p. 16) that

leads to changes in the individual and/or the environment and accordingly

stimulates development.

5) Individuals will have differing levels of resources to meet the challenges.

Although this theory is not directly linked to wellbeing, it reflects dynamic equilibrium theory

in terms of challenges that an individual faces and in terms of how wellbeing is a fluctuating

state. It also links to Cummins’ idea of a homeostasis defensive range in terms of the resource

pool that Hendry and Kloep discuss.

7. A new definition of wellbeing

The concept of wellbeing is undeniably complex, considering the aspects previously discussed.

This paper has highlighted the difficulty that researchers have had with defining wellbeing but

it has also recognised that previous research has been driven by dimensions and descriptions

rather than definitions. In order to move closer to a new definition of wellbeing, therefore, this

paper has focused on three key areas: the idea of a set point for wellbeing; the inevitability of




A3 A4

A1 A2 Boredom

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Dodge, Daly, Huyton, & Sanders

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equilibrium/homeostasis; and the fluctuating state between challenges and resources.

Consequently, we would like to propose a new definition of wellbeing as the balance point

between an individual’s resource pool and the challenges faced:

Figure 4. Definition of Wellbeing

The see-saw represents the drive of an individual to return to a set-point for wellbeing

(Brickman and Campbell, 1971; Headey and Wearing 1989, 1991, 1992) as well as the

individual’s need for equilibrium or homeostasis (Herzlich, 1973; Cummins, 2010). Now,

however, the stocks and flows of Headey and Wearing (1992) have been replaced by the

resources and challenges of Hendry and Kloep (2002) and are the elements that can affect the

individual’s equilibrium; tipping the see-saw from side to side, supporting Csikszentmihalyi’s

(2002) updated concept of ‘flow’. This works just as Kloep, Hendry and Saunders (2009)


Each time an individual meets a challenge, the system of challenges and

resources comes into a state of imbalance, as the individual is forced to adapt his

or her resources to meet this particular challenge (p. 337).

In essence, stable wellbeing is when individuals have the psychological, social and physical

resources they need to meet a particular psychological, social and/or physical challenge. When

individuals have more challenges than resources, the see-saw dips, along with their wellbeing,

and vice-versa.

The definition supports Headey and Wearing’s (1992) aim to ‚understand how people cope

with change and how their levels of well-being are affected‛ (p. 6). However, the proposed

definition contradicts Cummins’ idea of SWB being static when the individual is not

challenged. Instead, we would argue, in line with Hendry and Kloep’s theory, that a lack of

challenge will lead to ‚stagnation‛ (Hendry & Kloep, 2002), which will also affect the balance of

the see-saw. The dynamic nature of the definition also reflects the viewpoint of Nic Marks, of

the New Economics Foundation. He recently spoke of his interpretation of wellbeing on BBC

Radio 4’s Reasons to be cheerful:

Wellbeing is not a beach you go and lie on. It’s a sort of dynamic dance and

there’s movement in that all the time and actually it’s the functuality of that

movement which actually is true levels of wellbeing (Nic Marks, Radio 4, 7

January 2012)

8. The considered strengths of the new definition

The authors of the current paper advocate that the vigour and freshness of this new proposed

definition embraces a number of strengths: simplicity, universal application, optimism and

basis for measurement.



Social Physical




Social Physical

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Dodge, Daly, Huyton, & Sanders

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8.1 Simplicity

Firstly, the simple, yet precise nature of the definition answers Forgeard and colleagues’ (2011)

plea to move away from ‚broad definitions‛ (p. 81). As much as we are indebted to the work of

Headey and Wearing (1992) and Cummins (2010), each of their models was complex and

difficult to follow at first glance. Wellbeing has become a term used by the lay person, and is

not just for the consideration of academics. Consequently, the authors believe that we have a

duty to communicate what wellbeing is, in a clear and effective manner. Indeed, Lilienfeld

(2012) talks in a forthright manner about the public’s scepticism in regard to psychology and

explains that we should be ready to communicate effectively when we ‚dare to venture out-

side of the hallowed halls of academia or our therapy offices to that foreign land called the ‘real

world’<‛ (p. 1). Consequently, we believe that the definition will be accessible in this forum.

8.2 Universal application

Secondly, a true asset of the definition is its universal nature. The definition can be applied to

all individuals regardless of age, culture and gender. However, this universal nature does not

reflect ‚a pronounced increase in the popularity of reductionist explanations of human

behaviour‛ (Lilienfeld, 2012, p. 120) that has existed during the past several decades. Instead, it

allows for the notion that each individual has a unique resource pool which ‚determines

whether or not a task an individual meets turns out to be a routine chore, a challenge < or a

risk‛ (Hendry & Kloep, 2002, p. 24).

8.3 Optimism

The definition also reflects the current emphasis on positive psychology. It views individuals

‚as decision makers, with choices, preferences, and the possibility of becoming masterful,

efficacious‛ (Seligman, 2002b, p. 3). In a similar vein, Csikszentmihalyi (2002) makes it clear

that ‚happiness is not something that just happens < *it+ is a condition that must be prepared

for, cultivated, and defended privately by each person‛ (p. 2). This puts the pursuit of

wellbeing in the hands of individuals by teaching them that they can increase their resources or

challenges to maintain a sense of equilibrium. As well as reflecting this new direction in

psychology, it also echoes current trends within the National Health Service in the UK with the

Expert Patient Programme (EPP) that was launched in 2002. This programme supports the idea

of self-management: ‚whatever we do to make the most of our lives by coping with our

difficulties and making the most of what we have‛ (Martyn, 2002, p. 4).

8.4 Basis for measurement

Finally, the proposed definition answers a number of the concerns expressed at the start of this

paper. With wellbeing becoming tangible (Thomas, 2009, p. 11) and operationalised,

measurement becomes easier. This would extend the qualitative work undertaken by Hendry

and Kloep (2002) on resources and challenges with the potential for developing a quantitative

measure of wellbeing based on these two aspects and adds to the theoretical ideas already

reviewed in this paper.

The authors have already used the definition to develop a new wellbeing questionnaire that

is currently being applied in a Further Education setting. This questionnaire was developed

through focus groups that explored the challenges faced by students aged 16-18, and the level

of resources they felt they currently had to deal confidently with these challenges. The

questionnaire is helping students to identify for themselves what resources need further

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Dodge, Daly, Huyton, & Sanders

www.internationaljournalofwellbeing.org 232

development in order to maintain a stable level of wellbeing and it will be supported by a

newly designed pastoral programme. Although our current research is being undertaken in an

educational location, if our proposed definition is accepted as a valid definition of wellbeing

the questionnaire could easily be adapted and applied across a wide range of settings.

To conclude, the publishing of this definition is timely given the intention of the UK

government to implement measures of wellbeing for the UK as a whole. Indeed, the Office of

National Statistics recently opened a discussion paper on domains and measures of national

wellbeing (Beaumont, 2011). The paper states that the question of individual wellbeing ‚is an

area which the national debate showed was important to people‛ (Beaumont, 2011, p. 4) and

which has consequently been placed at the heart of the national wellbeing framework. We

believe that using the proposed definition of wellbeing could aid the measurement of national

wellbeing and further the understanding of wellbeing as a whole.


Rachel Dodge

Cardiff Metropolitan University


Annette P. Daly

Cardiff Metropolitan University

Jan Huyton

Cardiff Metropolitan University

Lalage D. Sanders

Cardiff Metropolitan University

Publishing Timeline

Received 14 January 2012

Accepted 22 April 2012

Published 29 August 2012


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RESEARCH Open Access

The person in the disabled body: a perspective on culture and personhood from the margins Maayan Agmon1*, Amalia Sa’ar2 and Tal Araten-Bergman3


Background: Persons with disabilities (PWD) are one of the most marginalized groups in Western societies. These inequalities are manifested through various disadvantages in the psychosocial, cultural, and economic domains. Inspired by the World Health Organization’s holistic conceptualization of disability, the present study examines the relation between the body and personhood in Israeli culture, through cases of newly diagnosed adults with disability.

Method: Participant observation at a rehabilitation daycare center was carried out for a period of two years. The analysis is based on field notes recorded during these observations, including interviews with individuals with disabilities, their family members, and service providers.

Results: The analysis reveals the agonizing experience of individuals who have become disabled in adulthood, who undergo symbolic diminution and social exclusion after their former acceptance as whole and normative persons. This ongoing multifaceted process includes infantilization, denial of their sexuality/sensuality, transgression of gender boundaries, and their construction as categorically different from the “healthy” people around them. At the same time, the analysis also demonstrates the ways in which daily routine at the daycare center also complicates the normative healthy-disabled binary, indicating a continuum on which attendees may attempt to reposition themselves.

Conclusions: This paper aims to make a dual contribution. We draw on anthropological understandings of“person” as a holistic category to resurrect the personhood of individuals with disabilities, as a correction tothe overwhelming tendency to reduce their humanity to their physical injury. We likewise reverse theanalytical gaze by using these individuals’ experiences to understand the normative, culture-bound perception of “healthy” persons. We thus highlight Israeli culture’s conditioning of normative personhood on having a perfect body, and its concomitant construction of individuals with physical disabilities as lesser persons. By opting to bring back the person into the disabled body, we aim to facilitate a less stigmatized outlook on disability and to create an opportunity for caregivers, researchers, and healthcare professionals to view disabled persons as whole and complex human beings.

Keywords: Personhood, Health, Disability, Marginalized, Inequality, Disparity, Cultural, Ethnography, Israel, Discrimination

* Correspondence: agmon.mn@gmail.com 1The Cheryl Spencer Department of Nursing, Faculty of Social Welfare and Health Sciences, University of Haifa, 199 Aba Khoushy Ave, Mount Carmel, Haifa 3498838, Israel Full list of author information is available at the end of the article

© 2016 The Author(s). Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Agmon et al. International Journal for Equity in Health (2016) 15:147 DOI 10.1186/s12939-016-0437-2http://crossmark.crossref.org/dialog/?doi=10.1186/s12939-016-0437-2&domain=pdfmailto:agmon.mn@gmail.comhttp://creativecommons.org/licenses/by/4.0/http://creativecommons.org/publicdomain/zero/1.0/

Background The aim of this study is to identify ingrained, culturally bound assumptions inherent the treatment of people with disabilities, and how, through renewed dialogue, a shift can take place in their treatment away from a sin- gular focus on their physical condition and towards a more holistic focus on their personhood. Person with disabilities (PWD) are one of the most mar-

ginalized groups in Western societies. International stud- ies have demonstrated a persistent link between disability status and socioeconomic and health disparities. For in- stance, people with disability are more likely to live in pov- erty [1, 2], demonstrate lower levels of workforce participation and educational attainment [3, 4]; they may also face violence and discrimination related to their dis- ability and have difficulties accessing appropriate health care [5]. Moreover, despite the enactment of national and international legislation aimed at ensuring equal oppor- tunities for people with and without disabilities and the prohibition of discrimination on the basis of disability, these patterns of inequality remain significant. Acknow- ledging the reasons for these social gaps [6], scholars have called for a more holistic understanding of the processes and mechanism by which atypical bodies are translated into reduced social standing and forced into a distinct sense of personhood in a given culture [7–10]. In recent years, research on the body in general [11–13]

and on the disabled body in particular, has assumed a prominent place in the health and social science literature [14, 15]. Despite wide variation in topics and interpreta- tions, three underlying assumptions characterize this litera- ture. First, disability is a typically distressing experience, accompanied by stigmatization that often leads to socio- economic disparities and social exclusion [16]. Secondly, the disabled body is increasingly seen as a stopping point on a continuum of health, rather than as a counter- category of “able bodied” [7, 14]. Thirdly, disability is so- cially constructed insofar as there are cross-cultural varia- tions in its definition, experience and management [17, 18]. This paper explores the experiences of newly diagnosed

Israelis with disability. In keeping with the holistic and culturally embedded approach to disability, we take the focus off the afflicted body, the physical and mental com- ponents of disability, the stigma, and the practical aspects of its management, and look at the impact of the physical disability of these individuals on their personhood. Dis- ability studies have long argued against the reduction of persons with disability to their disabled body, with its in- evitable compromise of their integrity [19]. We endorse this position and take it one step further by arguing that the experiences of newly disabled persons can illumine the articulation of personhood in their culture more gen- erally. Having lived to adulthood as able bodied people be- fore becoming disabled, these individuals offer a unique

perspective on both normative and aberrant personhood. We use the term “person” as an analytical and normative concept that allows us to regard the participants as part of a larger social context [20]. While we reject the traditional focus on physical dis-

abilities and choose instead to concentrate on the person in the disabled body, the former remains important to us empirically and analytically. The influential work of Pierre Bourdieu, deflected the focus from social facts to the way such facts were created and recreated “from or- ganism to embodiment” [21]. The concept of “habitus”, for example, has advanced our capacity to undo the antinomy between structure and agency, and to show how humans internalize social structures which they then reproduce through practice [22]. Body “hexis” [23] likewise articulates the ways cultural knowledge is simul- taneously stored in and produced through the body. Concomitantly, the term “embodiment” directs us to

trace the ways complex interactions involving social knowledge, internalized beliefs, identities and bodily practices are objectified into size, shape and appearance, then made subjective again through practice [24–26]. It allows us to identify processes whereby abstract cultural knowledge is incorporated and transformed into con- crete behavior, sensation and perception. It also serves to grasp and articulate the dialectics between the phys- ical body and the political body [27]. It thus “encourages reanalysis of existing data and suggests new questions for empirical research” [24]. Recently, concepts such as “embodiment”, “habitus” or

the idea of “the body as social capital” have been gaining ascendancy, including outside anthropological and cul- tural studies. Disability studies, as already noted, are in- creasingly looking at the impact of social relationships on health and illness, and at the impact of the latter on social identities and social standings [28–30]. Similarly, the bio-social model of the World Health Organization’s (WHO 2001) International Classification of Functioning, Disability and Health (ICF), acknowledges that biology and society are entwined in a dialectical relationship that constructs disability as the result of negative interactions between an individual’s impairment and the physical- social environment in which he or she lives [31, 32]. The ICF conceptualization goes beyond medical impairment and calls for an all-inclusive view of the person as a hol- istic entity, placing the person’s body and experiences at the center of inquiry. Health, as portrayed by the ICF, is a dynamic interaction between the individual’s function- ing, resources and socio-cultural context. Instead of de- fining health as the direct opposite of disability, these two constructs are placed on a continuum [31, 33]. Con- sequently, health and disability are viewed as a holistic human experience, in which biological, individual, social and environmental aspects are invariably integrated.

Agmon et al. International Journal for Equity in Health (2016) 15:147 Page 2 of 11

Moreover, this conceptualization highlights the import- ant role of professionals and policy agencies in shaping the ways individuals with disabilities experience their lives, and the crucial role of bureaucratic procedures in facilitating or hindering their social inclusion. Lastly, the ICF recognizes that disability is embedded in complex socio-political contexts, so that its meanings and experi- ences are also mediated by social variables such as gen- der, family status, work capacity, social class and ethnicity [18, 34]. Hence, the ICF framework may serve as a conceptual framework for exploring equity and so- cial justice. According to this framework, the person’s experience is shaped by interacting with social processes and structures, which are also impacted by power, social place and time. Our study accords with the ICF holistic perspective and humanistic philosophy, but adds a cul- tural angle, as we explore the relation between percep- tions of disabled bodies and culturally specific notions of personhood. We also go beyond the discourse of func- tioning, disability and health, by using the experiences of subjects whose bodies have become disabled to under- stand the notion of personhood in their culture more generally. In Israeli culture the healthy body is a key component

of normal personhood [35]. The forming of the Jewish nation has centered on the project of forming a new Jew, with sturdy muscles [36] and an upright body, to re- place the presumed feeble and disabled body of the Jew in exile. The subjects with disabilities presented in this study, in their unintended deviation from the ideal of “the chosen body” [27] shed] light not only on the local cultural understanding of a healthy body, but also on what it means to be a “worthy” person.

Methods The materials for this study were collected using qualita- tive anthropological methods that include participant observation and in-depth open interviews. Participant observation is designed to encompass the full range of practical and discursive knowledge, thus enabling the re- searcher to explore the actors’ point of view as historic- ally situated and context-bound [23, 37]. Between 2002 and 2004, Ma’ayan Agmon conducted participant observa- tion at the center. She attended the center three days a week and participated in their events, such as holidays and birthdays celebrations. She kept a field diary docu- menting the various activities, conversations and her own reflections, eventually writing an ethnography of the cen- ter. The present paper is based on observations, interviews and field notes taken throughout the two-year period. Analysis of the data involves three steps, the first step was coding the material, the second step involved organizing the material into themes by the research team (MA, AS), and the third step involved interpretation of the themes

by using continuous reflexivity [38]. Reflexivity was achieved by paying careful attention to, and discussing to- gether, the emotional, cognitive and moral reactions of the first author in the field, including her newfound doubts about her self-perception as “healthy.” Setting: The research was conducted at a rehabilitation

daycare center in a city at the center of Israel, run by a large voluntary society. It caters to 35 attendees, aged 45 through 60 years (average 52). Most suffered brain dam- age and were transferred to the daycare center following a period of rehabilitation in a hospital. The attendees are considered “young disabled”, according to the definition of the Israel National Insurance Institute. At the time of the study four professionals worked at the center: a nurse who was also the director, an occupational therap- ist, a physical therapist and a volunteer psychologist. All four spent relatively few hours weekly at the center, leav- ing most of its administration and operation to thirty volunteers with no formal training or experience in rehabilitation. Services at the center included transport to and from

the attendees’ homes, cooked meals, physical and occu- pational therapy, and cultural activities such as handi- crafts and lectures on literature, Bible and history, as well as basic training in computer skills and the Internet. Two series of group meetings, one for the attendees and one for the volunteers, were facilitated by the physical therapist and the psychologist. The volunteers eagerly offered the attendees companionship and assistance.

Results The findings were organized according to themes. Fol- lowing the qualitative methodology of anthropological tradition, each theme will be supported by participant’s quotations.

“They think that a disabled person is also wrong in the head”–The social projection of injured body to personhood

In the course of the fieldwork at the center, definitions that at first appeared self-evident came under question and emerged as more complex. One seemingly clear-cut classification was that of disabled attendees and able- bodied caregivers. The “disabled” were those who had a visible disability and who had been referred to the center on account of any number of diagnoses provided by the medical establishment. All others were assumed to be caregivers by default. The taken-for-granted attribution of disability to visible bodily defects came up naturally in the introduction of the center to visitors, including the first author, who was unwittingly led to classify the per- son seated in a wheelchair or going about with a cane

Agmon et al. International Journal for Equity in Health (2016) 15:147 Page 3 of 11

and a splint as a patient, and the one walking upright on his or her own two feet as a caregiver. A more subtle observation, however, revealed that the

rigid division between disabled attendees and able- bodied caregivers did not go unchallenged. Rafi, a man in his fifties, paralyzed in the lower part of his body and mobile by means of a powered wheelchair, is a case in point. Having initially arrived at the center as an at- tendee, he soon assumed the position of its secretary:

I was here a month as an attendee. I went to the director and told her I was leaving. This place wasn’t worth fifty shekels a day. Most of the volunteers here are crap. One day they come, the next they don’t. I really like to paint (referring to the drawing classes), but it isn’t worth the money. The director didn’t want me to leave, so she sent me to a computer course. I learned Word, and since then I’ve been working here as secretary, volunteering for 300 shekels a month.

Another example of the local dichotomy of disabled attendees and able-bodied caregivers is Tehiya, who was introduced to the first author as a volunteer. Tehiya walked on her own two feet and was very well groomed, wearing stylish clothes and makeup. She even showed up for the meetings of the care givers team. It took the first author a long time to notice that the other volun- teers never approached her for help or cooperation, as if there was an unspoken agreement on the subject. Tehiya also suffered several bouts of hypoglycemia to the point of fainting, when an ambulance was needed to take her away. Asked why Tehiya did not come to the center as an attendee, but received the symbolic payment of vol- unteer, the director replied:

Tehiya is not disabled. She has lots of health problems, but you can’t insist that she come as an attendee, and she can’t be asked to stop coming because that is what keeps her going in life. The organization we belong to does good deeds, and this is one of them.

While Tehiya and Rafi may represent exceptions, their cases serve as useful markers of a more consistent, though subtle, rule. Participant observation at the center revealed that despite the formal construction of the dis- abled and the able-bodied as mutually exclusive categor- ies, the actors’ embodied knowledge implied a continuum of positions. In some cases such knowledge indeed facilitated creative negotiations, as exemplified by Rafi and Tehyia.

“Since the event I’ve become half a person”– Embodiment of the social projection to the self

The relationships that were formed at the center were largely focused on the body. Talking about the body estab- lished a new discourse on the person, revealing that the disabled body created an impaired, childlike, dependent self that lacked elements of sexuality and was deprived of its previous functions, such as in the area of gender. The injured body was the main subject of discussion

during the first encounter between the caregivers and the attendees. Attendees spent a considerable number of hours every day managing their bodies and tending it in various ways. The volunteers and staff likewise fre- quently undertook tasks concerned with bodily needs: accompanying attendees to the restroom, serving food, performing physical and occupational therapy, and pre- paring handicrafts. Attitudes to the body were expressed in several ways: the attendees referred to themselves in terms of “before” and “after” the injury, comparing themselves with each other and with the world of the able-bodied, on a scale of independence–dependence. Attendees frequently expressed frustration with their

lack of control over their bodies. They used poignant met- aphors of a broken or malfunctioning body that brought into sharp relief the cultural emphasis on control over the body as an essential component of adult personhood:

Aryeh: Since the event I’ve been half a person—half is saying too much: a living dead person. On one side you see how he’s dead. The tonus goes higher and higher, the hand is completely paralyzed, the leg is splinted. Dr. Zaiger told me on my last visit to Leowinstein, that if it doesn’t improve we’ll have to give injections to release the tonus.

Gadi: I have no stability in my body. My body doesn’t listen to me. People see me and they think that any second now I’m going to fall over and whoops— they want to grab me. It’s like I’m drunk and going to topple over any minute. It’s not as bad as it looks, but my body doesn’t listen to me. Zeev: I’ve got this weird thing that I cry and laugh without control. Suddenly something small happens and I begin to cry like a baby and it’s out of control. I can’t stop it. Same with laughing. I laugh and because of the ataxia the laughter sounds really loud and people look at me and think that I’m a bit wrong in the head.

The underlying assumption that the visibly damaged body entails cognitive disability came up frequently in the attendees’ narratives. For example, they related how doctors would choose to direct the explanation about the injury to their spouses and not to them, even when they themselves were present. They were well aware of these situations, which recurred in different variations in their daily lives, making it difficult to go out alone.

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In the therapy group the attendees were asked to draw their bodies as part of an exercise to build a bridge to their unconscious. After completing the drawing, they were asked to talk about it. The drawing below exempli- fies the theme of lack of control, a feeling so powerful that it surprised even Adiva, the woman who drew it:

First of all, what amazed me is that I didn’t draw one

hand, my paralyzed hand. Apparently I have internalized the fact that it’s not going to work again. A while ago I asked the doctor what he thought about it and he said that in his opinion the hand wouldn’t work anymore. And it hurts me to discover that I’ve come to terms with it, as if this hand isn’t part of my body.

The theme of control and lack of control over the body was particularly prominent in attendees’ interac- tions with the medical establishment and medical personnel. Apparently, upon experiencing new and un- familiar feelings, attendees approached the medical personnel, who established an initial sense of control over the condition by the very naming of it. Attendees showed minimal resistance to what the physicians had to say, and even when they tried to resist were easily si- lenced by their relatives and acquaintances. They and their relatives tended to treat the opinions voiced by members of the medical establishment about the nature of their injury as highly authoritative. Yishai explained:

The doctor said the thing I suffer from, it’s a kind of depression. It has a direct connection to brain damage. A lot of people suffer from it. Obviously, something got damaged in the brain and in the areas connected to depression. He gave me pills and said it was for life. I took the pills–what difference does it make, one pill

more, one pill less. I personally don’t think I’m in depression. The social worker thinks the same as the doctor. She talked to my wife about it, and began to do her head in with it and said it was normal and that there are stages of mourning. My wife came to talk to me about it. I don’t believe in this dime psychology, but if it does my wife and the doctor good I don’t mind taking another pill.

Attendees tended to be very conscious of the unusual state of their bodies, and they said that this awareness was intensified by the attitudes of those around them. Some- times the attitudes that they absorbed most strongly illumi- nated the symbolic burden carried by their exceptional body, as well as other underlying assumptions regarding disability that encompass a person with an injured body. The attendees reported that sometimes they took advantage of these preconceived ideas, by allowing themselves to be- have in unacceptable ways or by falsely pretending to be unable to perform certain tasks. But above all, they resented these assumptions because they prevented them from par- ticipating in social life along with those who looked, and were perceived as, healthy. As Rafi, the attendee in a wheel- chair who volunteered as secretary, described it:

People see a person in a wheelchair and at once think that there’s something wrong with him. I’ll tell you a story that you won’t believe. One day someone or other from the municipality came in here looking for Zefira. I told her that I was the secretary here and asked if I could help her. She ignored me and went to Tami to ask her. She thought that I was wrong in the head or something. I told her, “What, you don’t think a man in a wheelchair can tell you the truth?” But by now I’m used to this attitude and sometimes I make good use of it. For example, when I go to the Town Hall I start yelling straight away. I don’t care if they think I’m a nutcase. The main thing is that they give me what I want right away.

Yishai expressed similar sentiments about being treated as if he were incapable of doing anything:

The volunteers here think that we can’t do anything because we’re handicapped. For example, they hand everything to us, and if I go near the hot kettle they start shouting straight off as if I were a three-year-old. At home I make myself coffee without any problem. I can be on my own for hours sometimes. But here they leap up to do things for me.

By underestimating disabled persons’ abilities, and by doing things for them that they can do for themselves, the staff harm their self-confidence. The attendees

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perceive and convey this dependence as something nega- tive and undesirable in a society that nurtures independ- ence, hence reinforcing and legitimizing their exclusion. From the interactions between the attendees and the medical establishment, which are the predominant inter- actions in the construction of disability, many hidden messages emerge, at times more meaningful than overt messages. These covert messages take the form of ignor- ing the disabled person and promoting explanation- giving and decision-making between the doctor and the family, while omitting the client themselves.

“They’re like children to me”-Construction of the person with disability as childlike and asexual

Sexuality and gender as dominant components of adult personhood, were always present within the walls of the center. Prominent motifs in the construction of these issues were fracture and continuity, although at- tendees and their spouses differed in the expression of these motifs. While the former bore an overwhelming sense of rupture, the latter actually inclined to continuity in matters concerning their disabled spouse’s sexuality. Denial of sexuality by those whose bodies had betrayed

them was ubiquitous at the center. The relations be- tween attendees and caregivers evinced consistent disre- gard for accepted codes of interaction between men and women, as verbal and physical gestures, which outside the center would probably be interpreted as sexual har- assment or condescension, were completely normative. It was very common, for example, to see women volun- teers addressing the male attendees using terms of en- dearment, such as “honey” and “baby,” accompanied by a physical pat on the head. When questioned about this behavior, the women, most of whom were religious, there- fore forbidden any physical contact with unrelated adult men, typically alluded in their answers to the men’s path- etic and miserable state: “They’re like children to me.” Similarly, when male attendees complimented female vol- unteers on their appearance, the women did not seem offended by such seeming breaches of decorum; they sim- ply dismissed them offhandedly, claiming that this behav- ior was like that of children and could be overlooked.

“We are celebrating like kids”–Celebrations as a social projections

Another common practice of infantilizing was the im- portance allotted to ceremonies and special events in the center’s routine. These included birthdays, holidays and special events, which in Israel are usually celebrated by children at school and kindergarten, but not by adults at workplaces. For example, Issachar’s birthday was cele- brated on a weekday. All the participants were seated

around a table laden with goodies, such as chocolates, cookies, soda and cake. Most participants there suffered from diabetes and usually made an effort to avoid these foods. The birthday started with some birthday songs, followed by eating the food. The birthday party was de- scribed as an excuse to ignore their diet:

Issachar: Even the doctor said that every once in a while, at special events, we are allowed to deviate from our diet and eat some candies.

The participants were asked if they marked their birth- days that way before they arrived at the day center:

David: Believe me, I didn’t even know what date my birthday was until I arrived here. When they asked me, it took me a couple of minutes to remember.

Adiva: We usually celebrated within the family. It wasn’t a big deal. We ate a cake. We did it mostly for the children. Ester: I was a pre-school teacher, and the way we celebrate here reminds me of those days. It looks exactly the same with the candies and the songs. The only difference is that in pre-school the birth- day kid sat on a chair and we lifted him up in the air. We don’t do that here. Ever since I started coming here I have brought a cake and celebrated, pretending it’s a real celebration. Janet: What can I tell you— it’s nice to celebrate. With me, since my husband died and I have only one child, we didn’t really celebrate. Here I really feel everyone’s happy with me. It’s important, that attention.

Other holidays were celebrated using a format that is more accepted among children. After a party on Purim (a Jewish holiday where people wear costumes), the par- ticipants described their feelings:

Uri: I wanted to go home, and my wife wanted to stay. I don’t like all these parties, and it’s always crowded and you can’t move. If you want to go to the bathroom you have to move all the people sitting next to you. I don’t like these things, and my wife forces me.

Adiva: I don’t like these kinds of celebrations either, but the volunteers invest a lot of effort in it, so we have to come and thank them. We have to show our appreciation.

The argument that the participants did not fully iden- tify with the nature of the event, but cooperated to sat- isfy the volunteers, was repeated several times during the fieldwork.

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“I was a living man. Now I’m a broken reed”-Gendered experiences of disability

Differences between men and women stood out sharply in all aspects of sexual and gender self- perception. The subjects of conversation between men and women were fairly stereotypical and replete with blatant symbols of sexuality. For example, at three meet- ings of the therapy group, the conversation centered on driving and vehicles, but quickly shifted into relations between men and women prior to the injury. In these conversations the women were silent, only requesting a change of subject after several meetings:

Yissachar turns to Aryeh: You see, soon you’ll have a van, and you’ll be able to drive around town like a man.

Aryeh: What man, what kind of a man? The days are over when I can go around like a man. Once there were women tourists in town and then I really did go around like a man–in every sense of the word. Group leader: What d’you mean? Aryeh: What d’you mean, “What d’you mean”? Either you get it or you don’t. I had a fabulous woman here. We had the time of our lives for years. I was a living man. Now I’m a broken reed. Janet: A woman while you were married? Aryeh: Yes. A wife is a wife and a woman is to have a good time with. David: There’s nothing like a wife. A wife knew you before the injury–that’s a different kind of knowing. She knows what I was before the injury [David’s speech is met with the men laughing and the women looking embarrassed.] David: Memories, memories. There’s a lot to remember. You can never do it like it was… Yissachar: If you did it like you did it once, you’d fall out of bed. The metaphor of mobility and the inability to drive a

vehicle and thus move freely in the public sphere, came up time after time among the men, in juxtaposition to their boasting about sexual relations with different women. They constantly lamented their injured body, which limited them and their sexual activity, and remi- nisced about their past sexual prowess. Unlike the men, who persistently bemoaned their diffi-

culty in sexual functioning, the women ignored this sub- ject entirely and repeatedly talked about their distress at being unable to perform house work and care for others. The problem they constantly complained about was their inability to do things the way they had, such as en- tertaining relatives and running the home properly, which they perceived as their sole sphere. Janet said:

The hardest thing for me is that I can’t prepare things for my children and my grandchildren like I did before- me, who used to do a hundred things all at once. In the mornings I’d go to women at home and give them a pedicure, then I’d work all day at the factory and go home. You should’ve seen my house–always clean, al- ways food…. Where’s all that now? I can barely manage to have a cake for visitors when they come.

When the subject of sexual relations came up, and dif- ficulty in sexual functioning compared with prior to the injury, all the women, without exception, spoke of their sorrow concerning the pain their husbands had to en- dure because of their impaired functioning, an issue that did not arise with the male attendees in respect of their wives. A picture of passivity was painted when the women were asked about sexual relations before and after the injury, as they expressed a desire to satisfy their partner, but did not perceive the lack of sexual passion as a significant loss for their own quality of life:

Yaffa: Me? What am I worth? Obviously, my husband, who is still young, will go and look at other women. It’s natural.

Adina: If it was the other way round, then what would you do? Yaffa: Not me. But women and men are not the same thing in these things. Women have other needs. In sum, regarding sexuality the men focused on their

own sense of fracture and loss, while the women empha- sized the fracture in the experiences of the able-bodied husband, who now had to live with a disabled woman. While they were worried that their sexually frustrated husbands might leave them, none of them lamented the loss of their own sexual pleasure.

“He was hardly involved before either”-Spousal relationships in the context of disability

Attendees—men and women alike—described brain damage as a serious breaking point in spousal relations. They noted a change in their spousal relations as a result of their becoming dependent and less functional. This perception stood in stark contrast to the way their spouses described the relationships. Typically, the spouses depicted a continuous pattern of relationship, only with the problems intensified. In three different conversations, held in different situations, attendees’ spouses noted how matters continued just as prior to the injury. The pattern of relations had not changed; it was simply augmented by the disabled body and the need to treat it. Aryeh’s wife substantiated this theme:

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“He was always that way, hardly involved, hardly any contact with the children. Only before the injury he would be out all day long. We hardly saw him at home. Now he sits in the living room, so it’s all more extreme.”

Attendees” references to sexuality and gender con- tained elements of both rupture and continuity. At the center, de-sexualizing the attendees’ bodies entailed their infantilization, so that they became exposed to behaviors common between adults and children. In their spousal relations the partner with disability highlighted the elem- ent of crisis, while the able-bodied partner stressed con- tinuity, explaining that the bodily injury had complicated the familiar pattern, but without making it radically dif- ferent. Regarding the ability to engage in sexual rela- tions, the men underlined the element of fracture and incompetence, which they associated with their impaired ability to drive. The women described their sexuality as passive even before the event, and highlighted the frac- ture in their ability to perform their domestic functions. Another example of the gender differences at the cen-

ter, was the presents given on birthdays, which symbol- ized the perception of continuity of gender among the attendees. Despite feeling the limitations caused by the injury and complaining about it on other occasions, they continued to receive gifts according to the perception that characterized them before the injury. For example, men usually got a pen, women a body lotion. This kind of presents was particularly interesting since some of the participants had limited ability to use their hands. Integration of the themes included in this ethnography

reveals that people with disability undergo symbolic in- fantilizing and de-sexualization, which feeds back into their construction as “half persons”, or defective human beings. As discussed below, this reduction in the category of “persons” reflects the perception prevalent in Israeli culture that a normal person is one whose body is healthy and functioning properly and independently. The failure of people with an injured body to live up to this standard therefore entails depletion of their humanity. The message that the attendees were lesser persons

was communicated through a series of symbolic di- chotomies. A basic distinction between healthy and dis- abled was reinforced through the symbolic treatment of the latter as children and their construction as asexual. It was likewise expressed in attendees’ continuous lamenting their inability to fulfill their appropriate gen- der assignments, and through their poignant sense of disjunction between their life before and after the injury. While participant observation revealed that these dis- tinctions did not go unchallenged, the message they communicated was unmistakable and their cumulative effect powerful and oppressive.

Discussion Disability as a window on normative personhood The main findings of this research expose a central facet of inequity and social exclusion in Israeli society. The findings reveal that the adult person in Jewish Israeli cul- ture is expected to be physically flawless, to function in- dependently and to be in full control. S/he is perceived as different from the child and as having the option of various courses of possible action. The unblemished body and independent adult person are one, and when the body is injured, the visible damage is associated with a damaged person. Analysis likewise shows that the per- son is established in a cultural space replete with di- chotomies (able-bodied vs. disabled, adults vs. children, women vs. men, flawless vs. damaged), with little room left for ambiguous positions. Accordingly, the injured body represents a retreat to a childish, pre-sexual and dependent state, with a limited ability to make choices. Our finding that the injured body serves as a primary refer-

ence for all the actors at the rehabilitation center illustrates Bourdieu’s theoretical concept of body hexis and the dialectics between formal and practical knowledge [23].We have shown that the vernacular classification of attendees and caregivers draws almost exclusively on the presence or absence of visible disabilities. This reflects the official knowledge regarding health and disability as mutually exclusive categories. Yet be- yond passive embodiments of pathology, we have also shown that attendees’ bodies comprise a major site of cultural pro- duction. As such, they at once reaffirm and potentially avert the naturalization of social structures and symbolic hierarch- ies. While for the most part attendees tend to incorporate the stigma into their most intimate experiences of subjectivity, the same body may also provide the instrument for their agentive reclaiming of social personhood. The perception of disabled persons as possessing

childlike characteristics was reflected in their being en- gaged in handicrafts suitable for children, in the manner of physical touch and addressing them in endearing lan- guage as if they were asexual, or in the common ten- dency of doctors to ignore them when providing medical explanations, addressing their relatives or friends in- stead. This tendency is rooted in Israeli culture more generally, as corroborated in the literature which high- lights the importance of the whole, healthy, strong body as a ticket to the Israeli collective [27, 36]. Attendees in general tended to accept their framing as “half persons,” albeit with lamentation, particularly concerning their in- ability to uphold normative gender performances. They tended to reminisce about their former pre-injury life, and expressed a strong sense of rupture. Lastly, besides these effects, the statements of attendees and caregivers alike also revealed an implied juxtaposition of physical injury and cognitive damage, although such an associ- ation was not necessarily supported by clinical evidence.

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This social construction of individuals with disabilities draws on three interrelated classifications: that produced by the psychological discipline, that produced by the biomedical establishment and that which is part of Israeli culture more generally. These three distinct cultural discourses share a per- spective of the universe organized across a grid of rigid di- chotomies [9, 39, 40]. In the biomedical discourse these dichotomies are expressed by medical classifications such as “normal” vs. “abnormal.” As expressed by Rafi, one of the at- tendees: “Mydoctor speaks tomywife and not tome. He thinks that the disabled body is also a disabled mind.” In the psycho- logical discourse they are expressed in strict distinctions be- tween men and women, children and adults, and again, normal and abnormal [41]. The Israeli cultural discourse, lastly, has filled these categories with a social content that may well be even more rigid, especially regarding the body and its physical performance. For instance, Israel has the highest rate of abortions of imperfect embryos in the world and a flourish- ing industry of pregnancy check-ups [35, 42, 43]. This em- phasis on the unblemished healthy body, which recurs in various situations all through the individual’s life span [36], emanates partly from the collective memory of the Holocaust [44], but also from the Zionist ideology of the “new Jew” [45]. Although they are not identical and in fact draw on distinct historical legacies, the three cultural discourses–the biomed- ical, the psychological and the general Israeli–effectively reinforce each other in creating a sense that healthy and in- jured persons are ultimate opposites, and that injury to the body automatically also impairs the person’s mental, sexual and social faculties. As a result, injured individuals experience multi-faceted exclusion, far beyond their physical incapacities. The ethnography of the rehabilitation daycare center shows

that although the physically injured body is the obvious center of attention of attendees and caregivers alike, what is actually communicated and negotiated among them is the value of the former as members of society, and whether they may still count as “full persons.”Attendees feel trapped in their injured bodies; they mostly tend to submit to their redefinition as de- pleted persons, and with it to the social exclusion that accom- panies it. Still, they are aware of the gaps between what their bodies can and should do, and between theways inwhich they as injured persons can and should act. Occasionally, they also manipulate these gaps, as with Rafi’s making a scene at the Town Hall. They may also attempt to broaden their auton- omy, as with Yishai’s demanding to make his own coffee, or challenge their exclusion head-on, as in the case of Rafi re- defining his role at the daycare center from attendee to secre- tary. Undoubtedly, this entire communication is indirect. It therefore does not comprise a direct challenge to the hege- monic cultural logic, as represented by the medical and psy- chological authorities, where the disabled body inevitably disables the person as a whole. It does, however, open a win- dow to the otherwise unmarked category of the “healthy” per- son, showing that it too is culturally specific.

This paper aims to make several contributions: on the clinical level it illustrates that the caregiver is a cultural mediator, whose behavior is invariably guided by cultural assumptions about the qualities of the healthy or the sick person. These assumptions are inadvertently shared with the person being treated, thereby contributing to their exclusion from society and feelings of isolation. Understanding the impact of cultural assumptions on the perception and treatment of patients with disability concurs with the increasing calls to make healthcare ser- vices culturally sensitive. In this case, cultural sensitivity assumes the dual sense of adapting professional and popular attitudes in order to skirt the most demeaning aspect of stigma: the depletion of the person; and of ac- knowledging that the construction of health and disabil- ity alike are always embedded in webs of cultural meaning and social relations. We believe that acquaint- ance with the overt and covert assumptions regarding the person can change these attitudes, therefore contrib- uting to more sensitive treatment of people with physical injury. This position clearly resonates with the ICF’s commitment to incorporate social relations into the def- inition of disability, but also takes it a step farther by in- corporating a distinctly cultural perspective. National and international policies should acknowledge this link and therefore translate it into enforceable mechanisms promoting the human rights realization and equal par- ticipation of people with disabilities. On a more theoretical level, our choice of the term

“person” is pertinent to the attempt to fine-tune the in- corporation of a cultural perspective into the medical and psychological professions, a longstanding project in itself. This choice reinforces the call in the anthropo- logical literature to shift from the construct of “self”, to the broader construct of “person” [46, 47]. In psycho- logical and psychiatric discourses, “self” tends to be dominated by pathologies. It also tends to be discussed in isolation from the full, embedded context in which ac- tual people spend their lives. The construct of “person”, by contrast, is more holistic and less a prisoner of bio- medical and psychological discourses, therefore lending itself to a more humanistic discussion. Besides helping us to neutralize the psychological load inherent in “self”, the more expansive anthropological formulation of “per- son” also allows us to see individuals through their rela- tionships, and through the array of forces and social structures that affect their lives [46, 47]. Lastly, on the political level, persons with disability ar-

ticulating their unique voice and using it as a platform for minority rights activism, have been the driving force of disability studies [46, 48]. In documenting the routine experiences of life with disability and using them as a lens to observe the broader meanings of life after disabil- ity, this study corresponds with this discourse directly.

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However, we take issue with the tendency still lingering in some disability studies to retain the traditional dichot- omy of the healthy vs. the disabled. Our study strives to regard disabled individuals first and foremost as persons, who occupy a particular point on a continuum of health and wellbeing.

Conclusion We hope that by bringing to the fore the culture-bound assumptions that inform the treatment of people with disabilities, this paper will promote a shift from regard- ing them diminutively as those whose physical injury has disqualified them also mentally and socially, to seeing them as whole, complex persons. Moreover, the study may shed some light on the process and mechanisms by which inequity is evolving. Our findings illustrate that inequity can be identified at two levels of analysis, soci- etal and individual. At the societal level the findings illu- minate the different ways in which the atypical body is translated into a reduced social standing, which may re- sult in the marginalization and social exclusion of people with disabilities, as well as active discrimination against them. The second level of analysis, namely the individ- ual perspective, demonstrates how the impairment of in- dividuals’ capacity to perform physical tasks is mirrored in their social interactions with professionals and in their overall institutional experiences, creating unnecessary negative outcomes. Problematizing normative percep- tions and a renewed dialogue are likely to be instructive in addressing the array of forces acting on caregivers and patients alike. In addition, defining the subjects as “persons” encourages both researchers and caregivers to view people with disabilities in a wider and more com- prehensive context – past, present and future – and as bearers of unique agency. Lastly, using the “person” as an analytic category, allows a broader perspective of the power-structure-agency complex that shapes the lives of people with disabilities and defines the contours of their transformation and adaptation. Such an open and fruit- ful dialogue and expanded perception of the “person” re- leases persons with disabilities from the cage of stigmatization, universal assumptions and cultural constructions.

Abbreviations ICF: International classification of functioning, disability and health; PWD: Persons with disabilities; WHO: World Health Organization

Acknowledgements N/A.

Funding N/A.

Authors’ contributions MA and AS designed the study, MA collected data, MA and AS analysed the data and organized them into themes. MA, AS and TAB wrote the manuscript.

Competing interests The authors declare that they have no competing interests.

Consent for publication Availability of data and material-All materials are available upon request.

Ethics approval and consent to participate The study was approved by the ethical board of the university of Haifa and informed consent was signed.

Author details 1The Cheryl Spencer Department of Nursing, Faculty of Social Welfare and Health Sciences, University of Haifa, 199 Aba Khoushy Ave, Mount Carmel, Haifa 3498838, Israel. 2Department of Anthropology, University of Haifa, 199 Aba Khoushy Ave, Mount Carmel, Haifa 3498838, Israel. 3School of Social Work, Faculty of Social Welfare and Health Sciences, University of Haifa, 199 Aba Khoushy Ave, Mount Carmel, Haifa 3498838, Israel.

Received: 26 June 2016 Accepted: 7 September 2016

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Agmon et al. International Journal for Equity in Health (2016) 15:147 Page 11 of 11

  • Abstract
    • Background
    • Method
    • Results
    • Conclusions
  • Background
  • Methods
  • Results
  • Discussion
    • Disability as a window on normative personhood
  • Conclusion
  • Abbreviations
  • Acknowledgements
  • Funding
  • Authors’ contributions
  • Competing interests
  • Consent for publication
  • Ethics approval and consent to participate
  • Author details
  • References