1Prior to conducting a series of surveys on Disability, Functional Limitation, and Dependency (HID), the French National Institute of Statistics (INSEE) screened the general population by means of a short questionnaire in order to target the population with disability. On the basis of the responses to this self-administered sample survey, conducted during the fieldwork of the March 1999 population census, Jean-François Ravaud, Alain Letourmy and Isabelle Ville discuss various approaches to the definition of disability. The target population will vary depending on the point of view—administrative records, personal assessment of concerned individuals, diagnosis of a professional. In this case, the screening procedure made it possible to analyse the overlap of the populations obtained by different approaches. The different coverage resulting from definitions that rely on the notions of functional limitation, restriction of activity, self-reporting, official recognition or need of assistance, constitutes a basis for a discussion of the concept of disability.
2How many persons with disability are there in France? All the official reports on disability and dependency periodically raise the issue of estimating their number, thus reflecting an unmet social need (Triomphe, 1995). It is quite difficult to estimate the size of the population with functional limitations, impairments, restrictions of activity, need of assistance, or difficulties in performing activities of daily living for health reasons. Do these persons represent a single population, or should several be distinguished? The question cannot, of course, be answered in these terms.
3One reason is that the situations are extremely varied and a definition cannot be based on any single simple criterion. Another reason is that the way this population is determined depends greatly on the chosen point of view—administrative records, judgment of a medical expert, or report of the individuals themselves.
4Important conceptual issues remain unsettled in this field, as shown by the highly animated international debates on the subject. No consensus has yet been reached on the question of definitions. Designing an overall survey is therefore a delicate task, since it requires precise definitions not only of what is being assessed but also of the methodology of investigation. It is a construct whose underlying foundations are always subject to criticism.
5Until now, the French statistical system of information on disability and dependency, which is a genuine maze, has not been able to meet the social need (Ravaud and Letourmy, 2000). This need must be set in the wider context of a growing international concern for the issue of disability and the evolution of the ways of assessing the health status of populations. From this perspective, conceptual debates over the last twenty years have focused on the adoption of a classification system.
The international context: changes in WHO taxonomy
6As an indirect consequence of the epidemiological and demographic transitions undergone by western countries, the International Classification of Diseases (ICD) created at the end of the nineteenth century and the underlying traditional biomedical model, which is primarily etiological, have become inadequate for the description of the functional state of individuals and populations resulting from a health problem. The traditional categories of morbidity studies do not provide enough information on the severity of health problems. A person whose cancer has just been diagnosed during a routine examination and has not yet reached the clinical stage, and a bedridden person whose cancer has undergone metastasis, have little in common. And what about the genetic predisposition to a disease?
7In response to this concern, the World Health Organization (WHO), already responsible for the ICD, decided to compile a manual on the consequences of diseases. Following a resolution of the World Health Assembly of 1975 and after preliminary work by Philip Wood, the WHO published in 1980 the International Classification of Impairments, Disabilities and Handicaps (ICIDH). This classification established three types or planes of health-related experiences: that of impairment, or injury level; that of disability, or functional level; and that of handicap, or social level [1]. Three classifications corresponding to these notions were published in a branching structure conforming to the ICD model.
8The revision of this experimental classification has just been completed by WHO. In May 2001, the 54th World Health Assembly adopted a new classification, the International Classification of Functioning, Disability and Health (ICF). In doing so, WHO moved this new classification from a secondary to a central status within the WHO family of international classifications, a clear sign of the importance of disability issues in the present approach to health.
The theoretical basis: disability as a social construct
9Disability is not an immutable medical fact. The very notion of disability and its significance are determined by historical, cultural and social factors (Stiker, 1982). It is the object of social representations, just as disease or health (Herzlich, 1969; Herzlich and Pierret, 1984). These representations influence both the concrete experiences of the persons concerned and the way they are verbally expressed.
10The choice of a definition, whether it is made by researchers designing a survey or by the members of a commission in charge of giving official recognition to a given disability (COTOREP, CDES) [2], depends to a high degree on social context. Different choices will result in markedly different target populations.
11In this sense, one can speak of disability as a social construct, to adopt Berger and Luckman’s “social construction of reality” paradigm. According to this “social constructionist” approach, self-representations of persons with disability highlight the social attitudes towards them (what one could call the “social treatment of disability”) as much as their own individual mode of functioning. If our aim is to understand how individuals cope with disability or with restrictions of their activities, analysing self-representations offers one insight among others into the social significance of disability (Ville and Ravaud, 1994). Our decision in this article to examine disability from the point of view of whether or not household members consider themselves as having a disability or not, regardless of their objective situation, reflects a methodological choice closely related to that conceptual approach.
Multiple approaches to match a multi-faceted reality
12To treat disability as a social construct is to expose the myth that it is an objective fact waiting to be measured (Ravaud, 1996). We need to acknowledge that disability is a multi-faceted phenomenon, and that each facet should be investigated in its own right. The influence of the chosen angle of investigation must be taken into account (Ravaud et al., 1994). It is useful to compare the outcome of different approaches to the subject in order to optimize the chances of covering it well.
13This article’s objective is twofold:
14— To compare the different populations that result from the adopted point of view: presence of functional limitations, need of assistance, self-reporting, administrative recognition of a disability, etc. These comparisons can show the areas of consensus or of dissent due to the choice of criteria. We will analyse the relations between these different variables, by age and sex of the individuals.
15— To study the factors determining the self-attribution of a disability with special emphasis on age, sex and the reasons given for the restriction of activity.
16We begin with a brief presentation of the methodology used by the Vie quotidienne et santé (Daily Life and Health) survey.
I – Methodology of the survey
17In order to make up for France’s dearth of data on disability and its relative lag behind other countries in this area, the French National Institute of Statistics (INSEE) has recently carried out a series of surveys entitled Handicaps, incapacités, dépendance (Disability, Functional Limitation, and Dependency), or HID in short. Their aim is to produce a framework for existing statistics, which at present constitute a disorganized and fragmentary patchwork (Mormiche, 1998a).
18Following UN recommendations (UN-Stat, 1996) and inspired by international experience, the HID survey among ordinary households was preceded by a screening phase using the answers to the Vie quotidienne et santé (VQS) questionnaire as a sampling frame. The present article analyses the data resulting from this screening process. We will present here the main points of the VQS survey methodology; the HID surveys are described in Box 1.
19The guiding principle was to combine a large sample and a short questionnaire. Thus, during the March 1999 population census, a representative sample of 417,000 persons was selected and asked to answer 18 questions. Cluster sampling was used. One out of every 150 census agents handed out and collected the additional questionnaires, along with the regular census forms, from all the inhabitants of the district covered. (There are on average 600 inhabitants per district). The non-response rate was only 14%, despite the non-compulsory nature of the additional survey. The final sample (national sample plus eight local extensions) consisted of 359,000 individuals.
Box 1. The Handicaps, incapacités, dépendance (HID) surveys
The 1998 HID survey corresponds to the first round of visits made to 15,000 persons living in institutions for disabled children or adults, in psychiatric or long-term care institutions and in retirement homes. For the survey of persons living at home, an initial screening phase was performed through a “Daily Life and Health” questionnaire (VQS), which a sample of over 400,000 persons was requested to complete at the time of the general population census. The sample of the 1999 HID household survey itself was obtained after a first selection of persons more or less affected by disability with varying sampling probability, followed by a matching process through recovery of their names and addresses in the census. The survey was conducted through face-to-face, computer-assisted personal interview with the 22,000 selected persons. The over-representation of individuals on the basis of assumed degree of severity of the disability made it possible to make room for a control group of persons who might have been missed during the screening process. A second visit was made two years later, in 2000 for the survey of institutions, and in 2001 for the household survey.
For additional information on the objectives and organization of the HID surveys, see Mormiche (1998b).
20The VQS questionnaire was designed to identify with as few questions as possible the largest possible number of persons who might be considered in some way to have a disability, on the basis of the definition chosen. The questionnaire includes five approaches to disability, based on what the respondent may report:
21— The first part includes a selection of seven types of functional limitations pertaining to various realms. These are: difficulty in reading, recognizing a face, filling in a simple form, speaking and being understood, hearing, picking up an object, getting dressed. In addition to identifying the persons concerned, these examples provide a concrete illustration of the title of the survey “Daily Life and Health”. This title intentionally avoided the words “disabled”, “invalid” or “dependent”, so as to encompass all persons, regardless of age, including those in good health.
22— Three questions that follow cover different types of assistance: need for human help; prosthesis, assistive devices, technical support; special housing modification.
23— Next comes a general question on “restrictions in the type or number of activities”. This question is the one preferred by experts to screen disabled persons among the general population with a single question. The next question concerns the duration (at least six months) and the cause of the problem. This made it possible to address certain mental problems.
24— Explicit reporting of disability, regardless of its nature, by the person concerned.
25— Finally, the extent of official recognition of the disability or the invalid status (card, pension, etc.), as recorded in an application and its acceptance or rejection.
26— For children under 16, the first module (on functional limitations) is replaced by questions concerning enrolment in a specialized institution or class.
27All the data are accepted as reported.
28The analyses presented below are derived from the processing of the responses made to the HID-VQS survey, which yielded 359,010 usable responses. Given the way the VQS was designed, we limited our analysis to persons aged over 16 (n = 284,888, corresponding to an estimated population of 45.8 million). In the next section, we analyse the links between the five approaches and compare the resulting sub-populations. Later, we analyse more specifically the factors that determine the self-attribution of a disability by a respondent.
II – The links between the different approaches to disability
29The underlying question of this analysis is whether the five approaches described above are equivalent to one another.
1 – Disability prevalence, estimated for each approach taken separately
30Table 1 presents, in decreasing order, the prevalence of disability among persons aged over 16, according to the different approaches. From the strict point of view of the relative importance of the problems reported in the general population, a hierarchy appears clearly. Having at least one of the seven listed functional limitations ranks first and involves 21.1% of the population. In order of frequency, trouble picking up an object comes first, followed by trouble reading, hearing, filling in a form, recognizing a face a few metres away, dressing or undressing, and lastly speaking and making oneself understood. Restriction of activity comes in second, and concerns 11.7% of the population, almost all of them having been suffering from this restriction for over 6 months. Then comes the self-attribution of a disability (9.5%). The need for at least one form of assistance is a little less frequent and concerns 7.7% of the respondents; this assistance consists most often of assistive devices, then human assistance, followed by special home modifications. Applications for official recognition of a disability come in last, with 6.2% of the population; 1 application out of every 6 has been turned down or is awaiting decision.
Reported prevalence of disability according to different approaches
Reported prevalence of disability according to different approaches
31These results are perfectly compatible with the hypothesis that the different approaches to disability are included within one another; the persons who have applied for official recognition represent the hard core and are included in the subgroup of those resorting to assistance; this subgroup is in turn included in the group of those who report being disabled, which itself is part of the group of those who experience activity restrictions. Within the larger population of persons suffering from functional limitations, Table 1 suggests that there are subgroups linked by a relationship of inclusion.
32Among the health reasons given for the restriction of activity (Table 2), the most frequent is aging, which together with severe pains, vision and hearing losses, represents half of the reported causes. Accidental causes, genetic diseases and congenital malformations are less frequently mentioned.
Health reasons behind restriction of activity, as reported
Health reasons behind restriction of activity, as reported
2 – Links between the populations defined by the different approaches: overlap and specific groups
33In a first stage of the analysis, we compare the populations defined according to various approaches that rely on the evaluation of what could be called a person’s “available individual potential” (physical and intellectual). This covers functional limitations, the need for assistance, and the global restriction of activity (see Figure 1) [5].
Overlap of the different populations with disability obtained through approaches formulated in terms of functional limitation, restriction of activity, or need of assistance
Overlap of the different populations with disability obtained through approaches formulated in terms of functional limitation, restriction of activity, or need of assistance
34Functional limitations may exist without hampering daily activities or requiring compensation. Conversely, it is difficult to imagine a person experiencing activity restrictions or requiring assistance without having a functional limitation. For this reason, persons reporting activity restrictions or assistance are expected to be both less numerous than, and included in, the group of persons reporting one or several functional limitations.
35The VQS survey data show that among the persons concerned by at least one of the three approaches, about half report one or several functional limitations without resorting to assistance or being restricted in their activities, whereas only one-fifth (4.6% of the general population) cumulate all three criteria.
36But the inclusion hypothesis is not entirely verified. Nearly 15% of the persons concerned by at least one of the three criteria mention being restricted in their activities and/or resorting to assistance, though they do not report a functional limitation. Does this mean that the seven large categories of functional limitations selected for the questionnaire are not sufficient to cover the entire range of possible conditions?
37Though the findings are the same for males and females, they do differ when age is taken into account, with a distinction between persons aged over or under 60 (Figure 2).
Overlap of the different populations with disability obtained through approaches formulated in terms of functional limitation, restriction of activity, or need of assistance, by large age groups
Overlap of the different populations with disability obtained through approaches formulated in terms of functional limitation, restriction of activity, or need of assistance, by large age groups
38The persons aged 60 or more are concerned by at least one of the three selected criteria almost four times more often than persons aged 17–59; they correspond to half the general population. Furthermore, the overlap between the three approaches is highest for this population even if the relationship of inclusion is not entirely verified. In particular, there is an age differential in the reporting of a functional limitation without restriction of activity or assistance (38% among those aged 60 or more, and 60% among those under 60). Does this mean that this method of investigation leads to the omission of functional limitations that are more typical of young people? It is also possible that the perception of what constitutes a limitation may not be the same in both populations and that elderly persons tend to report more serious ones that are more often linked to a restriction of activity and/or to resorting to assistance. In any case, it seems that a screening system emphasizing one or the other approach would not cover the older and younger populations in the same fashion.
39In a second stage, links were established between the evaluations based on social, cultural or economic criteria such as restriction of activity and self-attribution or attribution by society (official recognition) of a disability (Figure 3). Reporting a global restriction of activity plays the role of key variable, since in addition to the fact that there exists a consensus on its use for international comparisons, it also stands at the intersection of social and individual variables.
Overlap of the different populations with disability obtained through approaches formulated in terms of restriction of activity, self-attribution of a disability, or official recognition of a disability
Overlap of the different populations with disability obtained through approaches formulated in terms of restriction of activity, self-attribution of a disability, or official recognition of a disability
40Once again, the hypothesis of inclusion may seem plausible. It is difficult to imagine a person reporting a disability and/or receiving official recognition without suffering from restrictions of daily activity. But this hypothesis was not entirely verified. Although several questions were previously regrouped as indicators (functional limitation, assistance), this time the three criteria were included in a single question. This suggests that the self-attribution of a disability and its official recognition imply other factors—socio-cultural and economic—besides mere restriction of activity. According to the data, one-fourth of the persons who reported having a disability were not restricted in their activities. Does this mean that despite the fact that the context was defined by the previous questions on functional limitation, assistance, and health problems, the notion of disability, for some people, can include social considerations linked to illiteracy or social exclusion for example, which do not directly pertain to health? In addition, 10% of the persons who had received official recognition of their disability did not attribute a disability to themselves or report a restriction of activity. These were mostly men, younger than the average of the screened population [6]. This surprising result should probably be connected with the multiplicity of types of recognition and benefits. In particular, it may correspond to work-related accidents whose consequences, even if they are slight, can lead to social recognition and benefits, or to cases of persons recognized as disabled by COTOREP because of social difficulties.
41As previously, taking age into account sheds light on the comparison between the three populations (Figure 4). Persons aged 60 and over more often report being restricted in their activities even without acknowledging a disability or being officially recognized as suffering from one. Conversely, the disability of younger persons is more often officially recognized. These results strongly suggest that the factors determining the self-attribution of a disability and its social recognition are not the same before and after age 60.
Overlap of the different populations with disability obtained through approaches formulated in terms of restriction of activity, self-attribution of a disability, or official recognition of a disability, by large age groups
Overlap of the different populations with disability obtained through approaches formulated in terms of restriction of activity, self-attribution of a disability, or official recognition of a disability, by large age groups
3 – Non-equivalence of the different points of view
42The responses to the VQS survey lead to the consideration of alternative approaches to disability. The resulting data allow the comparison between two interpretation grids, which can be defined through direct reference to the International Classification of Disabilities. The first grid is based on a linear view of the classification and emphasizes causal relationships between the concepts of impairment, functional limitation and social disadvantage: there is no social disadvantage without functional limitation, and no functional limitation without impairment. With this grid, we can view the different approaches of the VQS as linked by relationships of inclusion, and, in order to account for individual situations where impairment does not generate functional limitation, nor functional limitation generate disadvantage, we may invoke the severity of the disability on the one hand, and the resorting to assistance (external devices to compensate for it) on the other. The second interpretation grid is based on the idea that each level of the International Classification of Disabilities, as well as all related practices (expressed need of aid, assistive devices) refer to a specific complex of determining factors, in particular because of the influence of social representations that are associated with impairment, functional limitation and disadvantage. This second grid leads to the consideration that the various approaches to disability suggested by the VQS survey are not equivalent to one another. The “population with disability” is often rather “populations with disability”, since the term “disability” has a plurality of meanings (Mormiche and the HID Group, 2000). The interpretations referring to either of those grids are not totally contradictory, but depending on the type of data collected, they are not equally productive. Without a complete and verified description of the state of health of each person, or without precise information concerning the severity of their disability, the coherence of the first grid may be only apparent. In the VQS survey (and the other HID surveys), the information comes from statements that are difficult to verify, and this leads us to believe that the reporting of disability depends above all on the social construct of this notion. If so, the second grid of interpretation, which suggests that the conceptual levels of the International Classification of Disabilities must be analysed independently, is of particular interest.
43The interpretation based on the first grid is not incompatible with the overlapping configuration of the populations defined according to the reported functional limitations, the global restriction of activities, and the need of assistance (Figures 1 and 2). That some persons reported a global activity restriction or a need of assistance without mentioning one of the seven functional limitations listed in the VQS survey may be due to the survey’s limited coverage of the range of possible limitations. A more complete investigation, i.e. a larger number of questions, would probably have shown that all persons requiring assistance or feeling that they suffer a global restriction of their activities also suffer from a specific functional limitation leading to a disability. Conversely, the fact that a large number of persons report one of the seven forms of functional limitations listed in the questionnaire but not a need for assistance or a restriction in their activities can easily be interpreted, and it could in itself serve to measure the prevalence of minor disabilities in the population.
44On the other hand, this grid does not help us understand the overlap of those populations that report a global restriction of activity, have filed an application for official recognition, and attribute themselves a disability (Figures 3 and 4). It is difficult to imagine that a person would report filing an application for official recognition while considering at the same time that there is no disability and no global restriction of activity. To do so, one would have to assume that each of these forms of disability refers to a social logic of its own. These logics must of course be made explicit, and we will attempt to do this below for the question of self-attribution of a disability. Nonetheless, that different results are obtained with the different approaches to disability has methodological consequences for the definition of a procedure to screen persons with disability within the general population.
45The effectiveness of a screening procedure based on questions pertaining to functional limitations depends on the size of the field it is meant to cover. If this type of filter does not discriminate between minor and severe limitations, it will select a population that is very heterogeneous with respect to disadvantage, and possibly very different from the population receiving benefits from the state. Conversely, if the investigation is strictly limited to persons receiving such benefits, other persons who consider themselves with disability will be ignored. There is then no way to compare the situations of these persons, in terms of limitation or disadvantage, with the situation of those who do receive indemnities. A screening procedure based on the most widely accepted question pertaining to global restriction of activity allows a correction of this bias, but still “produces” only half the target population yielded by the seven questions on functional limitations, and probably even less if the filter were to include fifteen such questions. Because the different approaches are not equivalent, the screening procedures must be adapted to the objectives of the description and analysis of the population with disability. The number of questions asked about impairments or limitations is necessarily limited and there is no miracle question, even if some are more discriminating than others.
46With hindsight, given the fact that the HID survey was being conducted for the first time and that its general purpose was to provide a framework for various types of information on disability (Mormiche, 1998a), the results of the VQS survey show that it is necessary to draw a sample capable of providing information compatible with the different approaches, without giving preference to one or the other level of the International Classification of Disabilities or to the existing benefits system. The procedure used to draw the HID sample took this concern into account. The result was a typology of approaches to disability, which should not be considered as a classification of disabilities by degree of severity, since we do not have any precise information enabling us to define such a concept.
III – Self-attribution of disability and its determining factors
47After comparison of the results obtained through the different approaches to disability, we focused on the factors determining the self-attribution of a disability. Using multivariate analysis (logistic regressions), we tried to explain the reporting of a disability (self-attribution) in terms of different variables: sex, age, resort to assistance, functional limitations, global restriction of activity, and the reasons for this limitation. The analysis presented here shows the effect of the different variables on the probability that a person will attribute him- or herself a disability; if there is no effect, the odds ratio (OR) is equal to 1.
1 – The effect of sex
48First, we studied the gross effect of sex on the self-attribution of a disability (Table 3). Women are 8% more likely to report a disability than men. But women live longer and functional limitation is strongly related to age. If we take age into account, women report a disability less often than men. The gap between men and women increases when we control for other variables as well. For instance, if we take only age into account, women are 8% less likely to report a disability, but if we control for age and the presence of functional limitations, then the gap reaches 20%. With equivalent age, limitations, assistance and restriction of activity, women are 30% less likely than men to report a disability.
Effect of sex on the self-attribution of a disability in logistic regression, after control for several variables
Effect of sex on the self-attribution of a disability in logistic regression, after control for several variables
49The differences between the sexes, already significant when the effect of age is removed, are even greater when the variables pertaining to individual potential are controlled. For this reason, these differences must be analysed bearing in mind sociological observations concerning gender roles.
2 – The effect of age
50Second, we studied the effect of age on the self-attribution of a disability (Table 4). In these analyses, the central age group, 40-49, was selected as reference category (OR = 1). Examining the gross effect of age shows a regular increase in the probability of reporting a disability. The odds ratio rises from 0.3 for persons under 20 to 9.5 for centenarians. Interestingly, from 60 on, the impact of age is even greater when sex is controlled for. At 80, the impact is 1.5 times higher than before the adjustment, at 90 it is twice as high, and after 100 three times as high. For centenarians, the odds ratio is 27, meaning that when the effect of sex is removed, centenarians are 27 times more likely to report a disability than people in their 40s. This means that for the elderly, the effect of the distribution by sex masked the effect of age, which explains why the latter is much lower in the bivariate analysis.
Impact of age on the self-attribution of a disability depending on the variables used in the logistic regression
Impact of age on the self-attribution of a disability depending on the variables used in the logistic regression
51The major interest of these analyses, however, is to show that if one also takes into account restrictions of activity, the probability of reporting a disability increases slightly until age 60, then remains stable at a level which is barely significant after that age (the odds ratio fluctuates between 1.2 and 1.5). Figure 5 represents the odds ratios and their confidence intervals at the 95% level for each age group according to the various models presented in Table 4, with special emphasis on the area on both sides of the line showing the absence of an effect (OR = 1). Although the effect of age seemed considerable, it disappears for all practical purposes because it was explained by the exponential growth with age of the restrictions of activity. Lastly, when all the variables concerning the available individual potential are controlled for, the surprising result is that the impact of age not only disappears, but is reversed in a very significant way. All things being equal, the likelihood of reporting a disability decreases monotonically after 60. Compared to the 40-49 reference category, this likelihood is twice as low after 70, 4 times as low after 80, 10 times after 90 and 12 times after 100.
Effect of age on the self-attribution of a disability, by variables included in the logistic regression
Effect of age on the self-attribution of a disability, by variables included in the logistic regression
52The age of 60 appears to be a turning point. Before this age the adjustments have scarcely any effect. This raises an issue to be considered later: how can the coincidence with retirement age be explained?
3 – The effect of variables linked to the available individual potential
53After analysing the effects of sex and age, we studied the effect of other variables linked to the available individual potential on the self-attribution of disability when age and sex are controlled (Table 5).
The effect of the variables linked to available individual potential on the self-attribution of a disability (logistic regressions)
The effect of the variables linked to available individual potential on the self-attribution of a disability (logistic regressions)
54The most important determinant of the reporting of a disability is activity restriction. Persons restricted in their activities are 75 times more likely to report a disability than others. The identification of this major factor contributes to justifying the choice of this item as a screening question in international recommendations.
55The second group is made up of different forms of assistance. Human assistance has the highest impact, followed by assistive devices and housing modification. Among the functional limitations, motor problems that lead to dependency, such as difficulty picking up an object or getting dressed, have the strongest effect, whereas hearing or vision loss has a lower impact on the probability of reporting a disability.
56Finally, among the reasons given for a restriction of activity, accidental, congenital or genetic causes come first in the list of causes with a significant effect on the reporting of a disability, all other things being equal. Nervous disorders (anxiety, behaviour troubles) do not have a significant effect. Hearing or vision loss, and even more so aging, have a significant but negative impact, since persons who attribute their restriction of activity to aging are four times less likely to report a disability than those who attribute it to other causes.
4 – Disabled or elderly person: two competing “careers”
57The search for factors explaining the self-attribution of disability is necessarily limited by the quantity and nature of the information collected in the VQS survey. For instance, it is not possible to analyse the self-attribution of a disability in terms of social disparity, although the latter would have provided a better explanation of some social inequalities observed in this area (Ravaud and Mormiche, 2000). Our findings on the effect of age and sex, however, do provide some indications about the process of social construction of disability. The answer to the question asked is of course extremely subjective, but it reflects the individual’s personal evaluation of disadvantage. In that respect, it can be compared to the application for official recognition that comprises an external evaluation of one’s disadvantage in order to obtain a benefit. Both questions are in sharp contrast with the VQS questions pertaining to individual situations that can be more or less objectively assessed (functional limitation, assistance, global restriction of activity) and represent a measure of available individual potential rather than the evaluation of a disadvantage.
58The impact of available individual potential on the self-attribution of a disability is not surprising. As can be observed, the decrease of this potential influences the self-attribution of a disability mainly when the latter has to do with motor or hearing impairments. The effects of age and sex, when individual potential is controlled for, were less foreseeable. Women, who globally have more limitations than men, are more reluctant than men to report a disability for a given individual potential. Although the actual reporting represents the evaluation of a perceived disadvantage, female gender roles appear nevertheless to have a strong influence on social representations. The fact that women, given the same individual potential, are less likely to report a disability than men (but also less likely to consider themselves entitled to official recognition) could reflect the fact that their potential holds a lesser economic value.
59The impact of age on the self-attribution of disability also appears when the degree of limitation is controlled. The observed decrease in the self-attribution of disability after age 60 has rarely been observed before. It would appear that the end of working life also marks the end of the “career” as a disabled person, according to the expression used by Goffman (1963). The gradual shift to an “elderly career” seems to coincide with retirement from the “disabled career”. Once again, the issue at hand may be the assessment of the disadvantage, which depends on the economic value of a person in terms of employment. This would mean that the image of disability is defined to a large extent by its departure from the dominant model of the employed individual, a contrast that disappears at the legal age of retirement. At that time, a person with disability becomes first and foremost an elderly person. But the evaluation of a disadvantage is in any case relative, since it is the result of a comparison between one’s personal situation and that of other persons of the same age. Aging levels the physical and intellectual playing field. Disability, a relative assessment, ceases to be such an obvious focus of difference.
Conclusion
60The initial findings of the VQS survey represent a preliminary phase prior to the processing of the HID surveys. Their contribution to the analysis of the process of social construction of disability has enabled us to deepen our understanding of the population with disability. The results show that the different approaches to disability are not interchangeable and that one must be wary of excessive simplifications. In addition, they have provided new material for the discussion of methodological issues pertaining to the identification of this population. These findings underscore the importance of giving particular consideration to the screening methods used in international surveys. The sensitivity and feasibility of screening methods are extremely important when evaluating the methodology of a survey on disability. By avoiding the temptation of an easy solution and by combining several approaches, the VQS survey made it possible to choose a satisfactory sampling method for the HID household survey.
61In matters of health, it is important to understand the specific contributions of general population surveys. They do not replace epidemiological surveys or administrative sources. The former are preferable for the purpose of assessing the prevalence of impairments or of the pathologies that caused them. The latter are necessary to identify those receiving social benefits. But neither provides information on the living conditions of individuals and their experience of disability, or insights into the dynamics of social need, which can only be approached from the point of view of the persons concerned.
Notes
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[*]
Centre de Recherche Médecine, Sciences, Santé et Société (CERMES), INSERM U502, CNRS UMR 8559, EHESS, Paris and Réseau Fédératif de Recherche sur le Handicap (RFRH).
Translated by Zoé Andreyev. -
[1]
Translator’s Note: The term “handicap” is avoided today in English, although it continues to be used in French. Here we translate it as “disability”, and “population handicapée” as “population with disability”.
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[2]
COTOREP: Technical commission for orientation and occupational reclassification; CDES: Departmental commission for specialized education.
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[3]
INED, INSERM, RFR (Federative Research Network) on Disability and RFR on Aging, Health, and Society, DREES (Direction de la recherche, des études de l’évaluation et des statistiques of the Ministry of Employment and Social Affairs), CREDES (Centre de recherche, d’étude et de documentation en économie et santé), CTNERHI (Centre technique national d’études et de recherche sur les handicaps et inadaptations).
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[4]
Support from the Ministry of Employment and Social Affairs, Social Security, Pension funds (AGIRC, ARRCO), health insurance organizations and companies (FFSA, GEMA, MGEN), the Association for the management of funds for the professional integration of the disabled (AGEFIPH) and the Association des Paralysés de France.
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[5]
The percentages in Figures 1 to 4 may slightly differ from those listed in Table 1 because of non-responses. To be included, the respondents must have answered all the questions on the variables.
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[6]
The screened population corresponds to persons who gave at least one positive response to one of the five approaches (functional limitations, restriction of activity, resort to assistance, self-attribution of a disability, official recognition).
