1Disability policies constitute, in France, a complex reality that covers a wide range of provisions; from collective compensation for industrial accidents and the development of medico-social institutions within a charitable form to the implementation of anti-discrimination rights in employment, the result of the settling-in of schemes with varied and partly contradictory objectives. [1] (Chauvière 2003, Winance et al. 2007). Without replacing the traditional objectives of protection and rehabilitation based on an essentially medical and individual definition of disability, a set of anti-discrimination provisions based on ideas of equality and inclusion has more recently been affirmed, along the same lines as concerns and policy changes at the international level (Heyer 2015). In accordance with the “social model” theorized by disability studies, this frame of reference shifts the focus on individual disability further towards the role of societies in the production of disability (discrimination, segregation in institutions, inaccessibility of public space) (Oliver and Barnes 2012).
2Since the law of 1975 and more clearly that of 2005, the principles of school and occupational integration, and also those concerning the accessibility of the built environment and transport, have been placed at the heart of disability policy reforms. In 2005, the creation of a disability compensation benefit helped to make life possible in independent housing rather than in institutions for people with severe disabilities. These developments are likely to have had significant material effects on people with disabilities (in terms of disposable income, schooling patterns, employment, housing, etc.). They also carry a potential for transforming the social status of this group, as with the effects of other anti-discriminatory policies (Engel and Munger 2003). But is this really the case? In what way has the social experience of disability, both in terms of material conditions of existence and perceived social status, been modified by the changes in public policies in this area?
3The impact of these changes in public policies can be understood in two ways. These policies have direct effects by helping to shape a range of possibilities for individuals: for example, to which schools do they have access? What financial benefits are they entitled to? But they are also the subject of specific forms of appropriations by these individuals themselves (who enrol in a particular school, file (or not) a claim for a given benefit, and understand these policies in their own terms). These two potentialities reflect, in the area of public policies, the interplay between social structure and individual action (Giddens 1987, Sewell 1992). To do this, this article proposes an approach in terms of policy reception, which I define as the set of processes by which a public policy is appropriated and co-constructed by the individuals it targets, and through which it produces its effects on them.
4Compared to other perspectives that, in policy analysis, address the issue of target populations most often in the context of other issues (policy conception and implementation, “street-level bureaucracy”, co-production of public policy involving interest groups), the approach in terms of reception is deliberately focused on the citizens themselves. It aims to trace the effects and uses of public policy on the basis of their social experience of it. This experience is considered in its entirety and without isolating the relationship to public policy, but on the contrary by grasping how this relationship is embedded in all the structures that shape the social world of each citizen (family context, social background, the place where they live, amount and methods of support from relatives, etc.).
5This comprehensive approach seeking to grasp how public policy contributes to structuring a universe of possibilities while offering scope for individual action uses biographical interviews with citizens as the privileged methodological tool. This is the approach adopted in the research on which this article is based. Between November 2014 and January 2016, I conducted 30 biographical interviews with people with either mobility or visual impairments, of different generations, men and women representing a diverse range of social and geographical origins and occupational situations. The interview guide followed a life-history structure, without emphasizing the relationship to public policy but by seeking to trace its role within the biographical narrative.
6On the basis of this research, I will develop the elements of an answer to the question of the impact of the changes in public policy on the social experience of disability around three sets of issues: education and employment, compensation, and accessibility. My analysis is necessarily provisional in view of the scope of the field concerned. Beyond these exploratory conclusions, the aims of this article are both theoretical and methodological. Theoretically, it is a matter of demonstrating, from the point of view of disability policies, the heuristic value of an approach in terms of the reception of public policy and, from a methodological point of view, to specify how this approach can be operationalized on the basis of biographical (life-history) interviews (design, implementation and interview analysis methods). While illustrating different potentialities of the concept of policy reception, my conclusions on the three selected themes are based on different techniques of analysis of the biographical interviews. First of all, the intergenerational comparison of life histories, particularly in terms of educational and occupational careers, shows a global effect—although one that is nuanced—of the long-term evolution of disability policies in the direction of desegregation. Then, the thematic content analysis of the interviews makes it possible to study the effects and uses of specific schemes: I will discuss the example of the disability compensation benefit, whose appropriations highlight a tension between autonomy and social control. Finally, the in-depth analysis of excerpts from the interviews on the theme of accessibility shows how unfulfilled promises about rights in this area can have a mobilizing effect. These three sets of conclusions are developed after a presentation of the French context in terms of disability policies, the theoretical framework in terms of the reception of public policy and its operationalization in a survey using biographical interviews.
A sociology of the reception of disability policies: issues and methods
7The study of the reception of disability policies presupposes a prior review of the evolution of these policies. I will then present my approach to the analysis in terms of policy reception, and the way in which the biographical interviews are used in this perspective, before providing details of the research methodology.
Disability policies in France
8All public policies, whatever their purpose (educational, health, penal, for example), involve the social construction of their target populations (Schneider and Ingram 1993). As with other policies targeting socially underprivileged groups (women, refugees, indigenous populations, Roma, etc.), disability policies have the particularity of having as their object a specific population. Although historically they have been specifically linked to a particular sector of public policy (work, army, health, special needs education), their definitional base is categorical rather than sectoral. Without being explicitly formulated in these terms, their role relates to the position of people with disabilities as a group within the system of social stratification, which they might influence through their interventions in various areas of public policy. This is why they benefit from being analyzed in their entirety, and not merely from the positions of the different sectoral schemes that they comprise.
9Several international studies on this issue describe a general evolution of disability policies from a “social welfare” model, combining protection and segregation of persons with disabilities (special education, being maintained outside of the general employment system with social benefits and/or sheltered employment) towards a civil rights model founded on inclusion and anti-discrimination (Hahn 1985, Heyer 2015). In this last model, the scope of the policies concerned is extended: disability is no longer the object of health and social policies, but concerns education (inclusive education), employment (non-discrimination), housing, urban planning, transport or culture (accessibility). While this contrast between two ideal-types of disability policies helps to identify an evolutionary trend, in practice policies often combine aspects of both models (Heyer 2013, Kimberlin 2009). This is particularly the case in France, where the recent promotion of an anti-discrimination referential [2] has been accompanied by a strengthening, rather than a weakening, of older features belonging to the social welfare model (Chauvière 2003).
10Disability policy in France has historically been defined as a social policy. Prior to the term disability becoming enshrined in the 1975 laws, [3] this policy had its origins in social policy law, with the principle of the collective redress due to injured workers and war veterans (Blic 2008, Ville et al. 2014). With the creation of the invalidity pension in 1945, and then the creation of an allowance for disabled adults (AAH, Allocation pour adultes handicapés) in 1975 (disconnecting the granting of a benefit from any precondition of employment), disability was characterized as an incapacity for work giving rise to social protection. At the same time, medico-social institutions for the care of children (specialized education) and adults (sheltered workshops) had been multiplying throughout the twentieth century through the initiatives of charitable bodies, leading the State to delegate (with monitoring) this component of the policy to charitable associations (Blanc 1999, Cret et al. 2013). This model, based on the assumption of a person’s incapacity to work, coexists, however, with an enterprise that “rehabilitates” individuals with disabilities into the world of work, through both medical aid (functional rehabilitation) and vocational aid (training for an occupation considered to be disability-friendly) to enable them to work (Plaisance 2009, Stiker 2013). On the employers’ side, a quota system (6%) set up in 1987 aims to encourage the employment of disabled workers. These initiatives do not, however, challenge the reality of a highly segregated labour market, confining disabled workers to less qualified and less prestigious positions (Bessière 2015).
11This protective and segregating orientation has coexisted with the statement of objectives of integration (since 1975) and later of anti-discrimination (since 2005) (Chauvière 2003). The 1975 law advocated the social and occupational integration of persons with disabilities, stated a “preference” (Article 5.1) for the schooling of children with disabilities in ordinary classes and introduced the idea of accessibility for housing units and facilities open to the public (Larrouy 2011). In 2005, the Law on equal rights and opportunities, the participation and citizenship of disabled persons clearly had egalitarian and inclusive goals, as indicated by its title. Three sets of provisions particularly illustrate this direction: the law of 11 February 2005 advocated school and occupational integration; it introduced a right to compensation for the consequences of disability that resulted in a payment that facilitates access to independent housing for people in need of significant personal assistance; finally, it set an objective of making transport and the built environment more accessible.
12At the same time, the law did not put an end to the more protective provisions of disability policies, indeed, it even strengthened them: it promoted school integration while validating the relevance of schooling in specialised schools for some children; it strengthened the quota system in employment, extended it to the civil service and maintained the sheltered employment sector. If the French case thus shows the limits of too rigid an opposition between the rationales of welfare and human rights, we can nevertheless identify a general tendency towards a clearer affirmation of an egalitarian and inclusive frame of reference, traceable in the discourses (promotion of equal rights, participation and citizenship) and in the design of instruments for public policy (Lascoumes and Le Galès 2005) aimed at making them concrete (arrangements for schooling in ordinary schools, disability compensation benefit). In what way has this long-term evolution of public policy crystallized by the 2005 law changed the social experience of disability? I aim to provide some qualitative elements of an answer to this question based on an approach in terms of policy reception.
The reception of public policy
13The question of the consequences of a policy for the people it targets has lost its centrality in contemporary French political science. It was, however, a foundational aspect of public policy analysis which, considering public policy as purposeful action, was consequently interested in its effects (Duran 1999, Mény and Thoenig 1989). However, while the evaluation of public policies took up this question, most often outside the university in the French case (Nioche 2014), the sociology of public policy as it developed in the critical extension of public policy analysis has tended to turn away from this (Hassenteufel 2008, Lascoumes and Le Galès 2012). Indeed, based on a critique of the simplicity of the representation of public policy as purposeful action, this trend has focused on the complexity of the process of defining and implementing policies, with the risk of abandoning any inclination to analyze them in terms of intention and, hence, any possibility of evaluating the outcomes and consequence of policies (Duran 2009).
14On the other hand, a significant number of studies by sociologists (or researchers working at the interface between sociology and political science) have made valuable contributions to the analysis of the effects of specific policies, without necessarily identifying their research as belonging to a sociology of public policy. Research on welfare policies (Duvoux 2009, Paugam 1993), housing policies (Dietrich-Ragon 2013) and educational policies (Oberti 2007, van Zanten 2009) provide good examples. Other authors have sought, also from sociological perspectives, to re-establish this link with public policies: Philippe Warin’s research on the reception of public policies by citizens and the question of non-take-up (2016) can be quoted in particular, that of Julien Damon considering homeless people’s relation to the policies targeting them (2012), or that of Lorenzo Barrault-Stella who, as part of his research on how parents deal with school mapping (carte scolaire), points out the “missing thinking” that in political science constitutes the relationship of the governed to the State (2013). Finally, as part of his ethnographic study of philanthropic social policy in Boston, Nicolas Duvoux defends a sociology of the reception of public policy implying the study of “the active appropriation of [public policy] by those who implement it and those who are its targets” (2015: 31).
15In the same way as those authors returning to the issue of the relationship of citizens to public policy, the research I have conducted also relies on the concept of reception. This contribution aims to clarify it by proposing a definition and reflecting on its operationalization through biographical interviews. I define the reception of public policy as the set of processes by which a public policy is appropriated and co-constructed by its individual targets, and by which it produces its effects on them. Policy targets correspond to the individuals or groups “for whom the policies are intended” (Warin 1999: 103), and I will focus here on individual citizens. The work on reception as I understand it therefore involves focusing on the individuals who are the targets of public policy to understand both the effects of public policies and the uses they make of them. Indeed, the advantage of the concept of reception as it has been used in the sociology of culture is that it makes it possible to grasp both the effect of the constraint that production can exert on reception, but also the relative autonomy and the active character of the latter: reception is “a site where meaning is produced” (Dayan 1992: 144), and as such can be considered as a “’moment’ in the process of production in its broadest sense” (Hall 1994: 31). This is why my definition implies the idea of the co-construction of public policy: although the latter also has binding effects on individuals, the meanings assigned to it by citizens and the uses of which it is the object participate in its social reality.
16Finally, by taking the target publics as the starting point for the analysis (rather than including them in a study of policy implementation, for example), this approach allows reception to be included within the wider social experience of individuals, and thus to grasp how both the effects of public policy and its appropriation are modulated by a series of social factors (gender, social class, age, place of residence, etc.). Thus the question becomes: how can this sociology of the reception of public action be methodologically operationalized?
The use of biographical interviews
17Different types of research methods can make a contribution to the study of reception processes. Quantitative measures of the take-up of various procedures, common in social policies in particular, make it possible to apprehend uses by relating them to individuals’ position in social stratification. They do not, however, give access to the meanings attributed to these policies. Archival work on user claims and administrative records (Barrault 2009, Weill 2012), as well as the ethnography of the frontline of public services (Dubois 1999, Siblot 2006, Spire 2008, Weller 1999) can also be used. The relationship of citizens to public policy is then grasped in the moments and situations where it is concretized (submission of an application, face to face meeting, etc). Such approaches, which take public policy as a starting point, however allow only limited apprehension of how the relationship to it fits into the wider social experience of individuals—which is more easily done by recourse to life history interviews. Although several of the above-mentioned researchers use biographical interviews as a complement to the other methods used, some studies employ them more centrally in the context of a study of the relationship to public policy (Garcia 2013, Lendaro 2013, Shah and Priestley 2011). The decision to make life histories the main resource for the study needs to be clarified.
18Contrary to the mainly informative use of semi-structured interviews in the sociology of public policy (Bongrand and Laborier 2005), I have chosen a method more commonly employed in legal consciousness studies (Pélisse 2005). Starting from a radical shift away from the legal institutions, this area in the sociology of law is concerned with how legality is understood and accepted by people as it is expressed in the course of their life stories (Engel and Munger 2003, Ewick and Silbey 1998). It is this approach that I propose to transpose to the analysis of the reception of public policy. In concrete terms, this means that survey participants are not selected in terms of their relation to public policy (through a particular administration, as is often the case in the sociology of public policy), but by other means. The questioning aims to elicit a history of the whole of the respondent’s lived experience, by deepening the question of the relation to different public policy schemes and programmes when these are approached in terms of the subjects’ life history (and by complementing it, if necessary, at the end of the interview).
19How do these interviews contribute to a study of reception as I have defined it, consisting of jointly understanding the effects and uses of public policy? Their ability to capture social structures from individual life-histories is a classic justification for the use of biographical interviews (Bertaux 2016). In a similar way, this method makes it possible to trace the effects of the policies based on the narrative of the life history of people. For example, in the case of this research, the story of educational conditions (ordinary or special school, distance from home, personal assistance) reflects a certain state of educational policies for children with disabilities (promotion of inclusive education or special education, creation of support mechanisms and obstacles to their implementation). At the same time, and because the relationship to public policy is not separated from the other dimensions of the lived experience in the individual narrative, the biographical interviews make it possible to grasp how the effect of the policies is modulated by other social factors, (parental support, location effects, gender, social class).
20But biographical interviews do not only illustrate the effects of public policy; they also make it possible to document its appropriation by citizens. As Michael Rustin points out, “biographies make society and are not just made by it” (2006: p.47). The comprehensive perspective of the biographical interview (Demazière and Dubar 1997, Michelat 1975) serves the purpose of understanding the meaning assigned to public policy and the uses that are made of it. The shift in perspective with respect to public policy is particularly useful here, making it possible to understand how it is spontaneously referred to (if at all) in interviews: which schemes are mentioned? How are they understood and used? What meaning is usually assigned to the public policy sector concerned?
21Finally, the interviews do not only show the uses of public policy that are more or less in line with initial expectations, but also ways of bypassing and contesting it. As Patricia Ewick and Susan Silbey (1995) point out in the context of legal consciousness studies, the histories contained in life stories are not just “hegemonic tales” but also “subversive stories”. The stories of the education of children with disabilities do not only show the effects of the evolution of educational policies, but also the cases of protest against the refusal of access to regular schools. Especially because these different dimensions are embedded in the narrative, the interviews help us to understand how certain policies, whose implementation does not live up to the stated ambitions for them (inclusive education, accessibility), can have effects on the politicization of individuals. Here we find a mechanism highlighted by research on policy feedbacks, but generally studied using more quantitative approaches (Pierson 1993).
22Without excluding the use of other methods, biographical interviews with citizens thus constitute a privileged methodological tool for a sociology of reception aimed at jointly grasping the effects and uses of public action as they form part of the social experience of individuals. This is the approach used in this research.
Research Methodology
23The research that supports this article (“The reception of disability policies: a qualitative approach”) was funded in 2014 as part of a call for projects from the Interdisciplinary Laboratory for Evaluation of Public Policies (LIEPP, Sciences Po). Between November 2014 and January 2016, 30 interviews were conducted with people with mobility impairments (15) and blindness or visual impairments (15), aged 23 to 75. Wishing to avoid institutional intermediaries, I multiplied the number of contact intermediaries in order to reach people with a variety of relationships to disability policies. Two types of intermediaries proved to be the most effective: service provider associations (mobility support, occupational guidance), which gave me access to their users, and the dissemination of an advertisement on the site of a specialized magazine, also distributed on several online forums and social networks. I also used the snowball effect from the initial responses.
24In addition to the type of impairment (motor or visual), the only restrictive indication contained in the advertisement concerned the age of the disability (more than fifteen years), in order to collect the testimonies of people who have experienced disability from before and after the 2005 reform. I met people whose disabilities had been identified early (at birth or early in childhood) as well as people with whom it had occurred later (following an accident or an illness). The sample includes 13 men and 17 women, with varied social backgrounds and occupational situations (social backgrounds: 13 from the working classes, 13 from the middle class and 4 from the upper class. Occupational situations were more difficult to categorize because of the instability of many careers. They include both people relying only on the AAH (Allocation aux adultes handicapés—the Disabled persons allowance) and those far removed from the labour market and people with jobs of varying degrees of stability and prestige, from ESAT work [4] to university professors). Virtually all (with two exceptions) currently live independently or at their parents’ homes, but many have had experiences at some point in their lives of living in institutions, either during their schooling (boarding school) or as adults (rehabilitation centre). 21 currently live in the Paris region (6 have always lived there) and 9 in other French cities of medium or large size or in their outskirts.
25The interview guide, which evolved over the course of the survey and was used in a flexible manner, included a first set of themes that were not centred on public policy: family context, the occurrence of impairment and its medical treatment, schooling, housing, conjugality and family life in adulthood, occupational career, description of current daily life, leisure, political participation. The guide also included questions specifically related to the interviewees’ relationship with disability policies (administrative procedures, perception of policy developments).
26The interviews were fully transcribed and analyzed through three types of analysis: drawing up of an individual portrait, thematic content analysis (using Atlas.Ti) and in-depth analysis of excerpts (see second part). The results from this analysis have been linked to the findings of the existing quantitative work. Before publication, we sent this article to the research participants whose comments we quoted to make sure they agreed with them.
The paradoxical dynamics of an emancipatory policy
27Three sets of provisions at the heart of the 2005 reform crystallize a transformative ambition, already evident in the 1975 law, which marks the long-term evolution of disability policies in France: promoting educational and vocational integration, creation of a disability compensation benefit, and the objective of making transport and establishments open to the public accessible. The reforms in these three areas carry an ambition to transform the position of disabled people as a group within social stratification, in the sense of encouraging their academic and occupational achievement, to promote their living in independent housing (via the disability compensation benefit [PCH]) and making the built environment and transportation more inclusive. To what extent has this ambition succeeded? What are the outcomes and uses of these policies? I will provide some answers to this question by exploring, around each of these three domains, a particular dimension of the reception of public policy, corresponding to a different technique of analysis of the biographical interviews (Table 1). In other words, I will not report all of my findings on these three themes, but will use them as a basis from which to illustrate the fecundity of the reception approach and how I have operationalized it methodologically in this research. The correspondence between each theme and the dimension of the associated reception in the table below is not exhaustive: for example, I also use thematic content analysis to study education, and not just the comparison of portraits. It is simply a choice of presentation of results in this article.
Three dimensions of the reception of disability policies
Three dimensions of the reception of disability policies
Schooling and employment: partial desegregation with obstacles put in its path
28Disability policies have, since 1975 and more clearly since 2005, evolved in a general way towards promoting the educational and vocational integration of people with disabilities (Plaisance 2009, Zaffran 2015). This development was not without ambiguities from the very point of conception of the policies since it coexisted with the maintenance of specialized education, sheltered employment and quotas with segregative effects, but there is still a general trend of international disability policies, in the sense of promoting desegregation. What have been its effects on the social experience of disability? The analysis on this point suggests a comparison of the educational and occupational career paths of different generations of individuals. To do this, I have used the portraits made from the individual interviews, which help with understanding the career paths as a whole. The comparison of the latter shows a relative evolution in the direction of desegregation, however strongly modulated by factors such as social class, gender and change in economic situation. The career paths of Marie Germain [5] (61 years old) and Chloé Lamarche (23 years old) illustrate how the transformations of public policy in terms of education and employment are reflected in contrasting experiences from one generation to the next.
Marie Germain is 61 years old. She was born in a middle sized town in northern France in 1954. Her father was a storekeeper, her mother was disabled because of a tuberculosis problem. Very visually impaired at birth following a congenital cataract, during the first years of her life she underwent a series of surgical operations (18 in total) aiming at “restoring a little vision”, but without success. She did not go to school until the age of 7 (the family doctor said “that she had time (to do so)”), she remembers having eagerly accompanied her older sister on the way to school (“I followed my sister to go to school with her […] telling myself, maybe they’ll let me in? [laughing] But actually no, no, I had go to back again. No, no, I really wanted to go to school.”). At the age of seven, she was sent to boarding school at the National Institute for the Blind (INJA, l’Institut National des Jeunes Aveugles) in Paris, probably on the advice of the doctor. All of her education took place there until the baccalaureate. Although describing the change as “quite rough” (beginning of schooling, separation from her parents), she was happy to be at school. She did not like the boarding school very much at the time of her pre-adolescence: she describes the Institute as “a house where we were not allowed to go out”. She is, however, very satisfied with the teaching she received. When she left the Lycée, she was not attracted to continue her studies, especially because she wanted to work and earn a living. Even before she passed her baccalaureat (which she obtained in 1973), she had heard (through the INJA) about a job offer as a Braille teacher at the Institute for Sensory and Motor Rehabilitation for Children in Poitiers (l’Institut de Rééducation Sensorielle et Motrice pour Enfants de Poitiers). She moved on her own to this city once she had her baccalaureate in hand, to return the following year to Paris, and take up the position as trainer in a rehabilitation and vocational training centre for visually impaired adults, a position she occupied until the end of her career. She is now retired, having benefited from early retirement due to her disability.
30The career path of Marie Germain has been particularly linear, and strongly influenced by specialized institutions in the disability sector: in a residential school at INJA from the age of 7 and until she was 18 years old, she then worked in two rehabilitation centres. Her career has been an institutionalized one, not just in the classic sense of “total institutions” (Goffman 1968), with her passage through the boarding school that marked her socialization as a blind person (Blatgé 2012), but also in the sense of the presence of disability organizations in her occupational life (as employers). This shaping of her educational and professional career by disability institutions created a form of segregation, while guaranteeing her a stable job. However, this stability was also hierarchical: Marie did not experience any career progression, despite having remained in the same job for a long time. She does not complain about this situation. The clear narrative she describes of an objectively linear career path contrasts with the much more disturbed and bitter character of most of the stories of educational and occupational integration of the youngest interviewees. The latter have faced a very partial inclusion and discriminatory situations, to which they are more sensitive than previous generations, which is confirmed by quantitative work on the issue (Bouvier and Niel 2010). The academic career path of Chloé Lamarche provides a good illustration.
Chloé Lamarche is 23 years old. She was born into a middle-class family in the Paris suburbs. Following an illness, she lost virtually all her sight before the age of one. Her education illustrates a transitional phase between schooling in a specialized environment and schooling in an “ordinary” environment, which she describes as promoted by her parents who wanted her “to have the most normal life possible”. Educated at age 3 in a regular nursery school, she then joined an elementary school with a special programme for the integration of children with disabilities, where she learned Braille while her classmates learned to read “in black”. She has retained a very happy memory of this period. She continued her studies in an ordinary secondary school without a dedicated programme, where she was the first visually impaired person to be integrated. The teachers were informed the day before the beginning of the school year that they had to accommodate a blind student. While some supported her, others were more reluctant to do so, like the Latin teacher who refused to take her in his class. A local authority service, the S3AIS, [6] provided her with Braille transcripts of courses and exams. Relationships with her peers were difficult: many of them looked on her with suspicion, or even jealousy, seeing the accommodations she had (extra time, possibility of staying in the class during lunch break) as “privileges”. One of her classmates, who later became a friend, tells her that she initially thought she was “a vegetable”. Because of these difficulties, both with her classmates and with some teachers, she left secondary school at the end of her course feeling “out of breath”.
Having applied to the local lycée, she came up against the school principal, who refused to register her on the grounds that the stairs would present a danger for her. This episode took place in March 2005, when the law of February 11 had just been adopted. Although she and her parents had heard about the law, they decided not to invoke it or insist on enforcing their right to attend the school: “We had heard about this law, but we could not fight on all fronts so we said let’s let it go for this time. Anyway, if we had forced their hand, it would have been difficult throughout the year, so … We let pass this time. Her mother took her exclusion very badly, but Chloe herself was in a sense relieved of the exhaustion of having to adapt to an unwelcoming school environment. She left to do her first year of high school at INJA. Disappointed by the level of education on offer, she left after one year to finish her secondary education in ordinary high schools.
After the baccalaureate, Chloe began studies in psychology, interrupted to repeat a first year at another university. She then had a revelation about her career plans when she first acquired her guide dog. She then chose to move towards animal osteopathy by taking specialized training. The school she was applying to initially refused her registration on the grounds of insurance. But this time Chloe decided to fight, contacting the school management to argue her case (“I said to the director: ‘You know, what you are doing, it’s clearly discrimination.’”), and finally got her registration. During this training, her relations with other students was better, especially because of the steps initiated by Chloe to introduce herself and explain her disability.
32Growing up as a blind person forty years after Marie Germain, Chloé Lamarche has had a very different experience of schooling, which partly reflects the effects of the growing public policy support for the education of children with disabilities in ordinary schools. In her own life course, integration into ordinary schools is the norm, and schooling in specialized institutions is an exception: Chloe was only educated for one year at INJA, following the discrimination she suffered from a lycée principal who refused to admit her to his school. However, education in ordinary schools is far from being an easy experience (Ebersold 2015). Apart from her elementary schooling in a school where integration arrangement were in place, Chloe found herself in contexts where she felt that it was up to her to adapt to the institution and not the other way around. She faced discrimination from teachers (the Latin teacher who refused to teach her in his class) and from a principal (who refused to admit her by using as excuse that the stairs would present safety risks to her). She also encountered difficulties with her classmates who, in the absence of explanations provided by the school staff, saw the arrangements from which she benefited as “privileges” and /or perceived her as a “vegetable”. In spite of these obstacles, she did well in her secondary schooling, thanks in particular to the support of a local authority service that provided her with the facilities she needed.
33Although her studies are still in progress, the way in which she thinks about her future career also reflects an inclusionary norm: disability does not play a limiting role in her thinking about career guidance, and her first years of higher education were akin to the experiences of many able-bodied students, made up of trial and error (psychology studies taken and then interrupted) before identifying a path that was more suitable. The way she managed to continue in this way shows how the analysis of the effects of public policy is inseparable from that of its uses. Indeed, although the experience of inclusive education and the promotion of occupational opportunity through disability policies have been able to encourage an opening up of possibilities compared to those available to previous generations in the way that Chloé understands her career options, it was through an individual approach to contesting her exclusion that she managed to obtain access to what she wanted to do as a career. The accusation of “discrimination”, which she levelled at the management of the institution, saw its scope accentuated by the context of development of anti-discrimination policies.
34The comparison of the life-histories of Marie Germain and Chloé Lamarche, in resonance with others collected in this research, shows a tendency to desegregate, although it is one strewn with obstacles. This general evolution must however be nuanced. Although specialized education was more common among those of my respondents born in the 1940-1960s than in those born in the 1970s, it was not systematic. Social class resources, combined with the always decisive parental support, have facilitated academic careers in “integration” before it was promoted by public policies. For example, Jean-Marc Sernin, who became blind at the age of 8 in the early 1960s, stayed in a mainstream school thanks to the support of his parents (who were teachers) and who paid for him to have Braille and typing courses at home alongside his schooling. Conversely, school integration, although a powerful norm today, is something far from being achieved in practice. The type and degree of disability, gender, social class, geographic location, and economic conditions strongly influence the outcomes of public policies for education and employment. Beyond the general trend illustrated by the two portraits cited above, the diversity of the life histories of research participants reminds us that, while playing an important role in the case of disability, public policies are only one factor among others that structure the universe of educational and occupational opportunities for individuals.
Disability compensation: Independent living under supervision
35The enshrining of a universal right to compensation for the consequences of disability was one of the major innovations of the law of 11 February 2005. The 1975 law introduced a first form of compensation with a compensatory allowance for third parties (ACTP—Allocation compensatrice pour tierce personne), to finance a few hours of personal and resource-based assistance. The law of 2005 extended the scheme by instituting a universal right to compensation: the PCH (Prestation du compensation de handicap—Disability compensation payment) is not means-tested and aims at compensating a wider set of additional costs related to disability (personal help as much as necessary, but also technical and animal aids, housing or vehicle adaptation, transport costs, etc.). The law clearly distinguishes this benefit from the income guarantee provided by the AAH. Compensation needs are assessed in relation to the “life project” of the person, according to a logic of individualization that is significant in all social policies (Astier and Duvoux 2006, Bertrand et al. 2011).
36This compensation contributes in two ways to the commitment of the community in the direction of an improvement of the place of disabled people in social stratification. On the one hand, for people living with a major disability requiring significant personal assistance, it makes independent living possible whereas it was previously financially inaccessible, because of the limits to compensation allowed under the ACTP (no more than 3 hours of daily personal care, in general) (Beyrie 2015). On the other hand, it is part of an equitable approach to the distribution of material resources, by providing a universal form of compensation for the extra costs of disability (and comparable to the compensation introduced by universal family benefits, for example). In order to study the reception of this scheme, I will refer to the results of my thematic content analysis, making it possible to systematically compare the stories of my interviewees on the topic of the PCH (the code “PCH-ACTP” having been assigned to 65 quotations in my corpus).
37In terms of the effects of public policy, the life-histories show that benefits are objectively a source of autonomy, whether in terms of the ability to live/do things alone, or less dependence on family or friendly ties, or, more generally, a relaxation of financial constraint. This is particularly the case for the people in our sample who require almost constant personal assistance (4 quadriplegic people, including one who has been tracheotomized). Two of them benefited before 2005 from other sources for financing personal assistance in addition to the ACTP (a Conseil général [i.e Local authority] funding in one case, and AGEFIPH [7] for the status of student in the other), but the PCH provides them with more systematic and sustainable compensation for the personal help they need. For other people with more specific compensation needs, the ACTP and the PCH in its extension allow a greater latitude in the displacements (financing of transport, in the context of inaccessible urban public transport), less dependence vis-à-vis relatives and less pressure on the personal budget for some daily life-tasks that are difficult or impossible to carry out (cleaning, cooking, shopping, minor repairs, etc.). Lastly, ACTP and PCH are often more generally perceived as income supplements (associated, where appropriate, with the AAH).
38Although objectively it is a source of autonomy, the PCH is frequently mentioned in the interviews from the point of view of the social control exerted by the administration (Maison Départementale des Personnes Handicapées, or MDPH [Departmental Service for disabled people]), both as part of the compensation needs assessment and on consequent expenditure. [8] Regarding the needs assessment, Leila Saddi (LS) (a thirty-year-old quadriplegic woman with a degenerative illness) recounted the lack of consideration and the intrusive approach (investigation of her non-profit activities) of the MDPH evaluator who made a home visit to assess her needs when, as her health deteriorated, she asked for funding for round the clock personal help.
LS: […] my condition really deteriorated, I asked … well, to have human help 24 hours a day. And I was told that I did not need it, because I was not dying. […] That there were people worse off than me. […] They called the NGO where I worked [as a volunteer], and they asked them if they could not help me, so it would reduce my hours of personal help, so they would not to have to pay for them.
40With respect to expenditure control, the difference with the ACTP must be emphasized: while the ACTP is paid in cash and its use left to the discretion of the recipient, the PCH, most often paid in kind, is intended to offset costs which must be justified (Ville et al. 2014). Although it covers higher costs than the ACTP, it also leads to increased supervision over its use—a challenge to those who have become accustomed to ACTP as a form of income that they can use quite freely. This difference between the two services explains why people benefiting from ACTP before 2005 and whose compensation needs were adequately covered by it, often remained under this regime, as allowed by the 2005 reform (Lo and Dos Santos, 2011). This was the case of Maryse Cloutier, a paraplegic woman (72 years old), who uses ACTP as an income supplement in addition to AAH and fears having to resort to PCH one day.
MC: “If you are on the PCH, they will ask you to justify the last penny, and I cannot do that.
AR: Okay, so [when the choice came after the 2005 reform] you preferred to stay in the ACTP regime …
MC: … and use the money as I want.”
42Coming back later on this issue, she noted that the AAH “is not enough” and commented:
MC: […] I still want to be able to go out. If I want to go on a trip, I can do it. If all my money goes on personal help and everything, it will just be so sad …”.
44Autonomy, understood here as the ability to access leisure activities, is therefore defined in a tense relationship with the public policy system: building on it while diverting its original purpose and bypassing and challenging the social control with which it is potentially associated.
45This interpretation of the benefit as an income supplement and, by extension, its definition as a social benefit is also reflected in the non-take-up of it by some of the upper (middle-)class citizens. Those who exceeded the ACTP resource ceiling are a new target population for PCH. Their reactions to the latter, whether they claim it or not, are instructive as to the meaning assigned to it. Several cases of non-take-up reflect the persistent identification of the benefit as a social benefit, which is a matter of assistance and not of an equity approach (where other benefits of a universal nature, such as family allowances, are less subject to the same type of interpretation). An independent worker with an invisible impairment hindering his mobility, Lucien Rémo (LR) (56) has had a successful career in coaching. His disability forced him to limit his travel time as much as possible, for example by driving a motor-cycle rather than taking the RER railway for his trips to the airport. When I asked him if he had considered asking the PCH to compensate him for this extra cost, the question seems to him to be obviously incongruous, and he was amused at the idea of seeing the civil servants of the MDPH receiving a request from a self-employed worker.
AR: In relation to costs like that, have you never thought of asking for the PCH?
LR: No, I never thought of it. It would be funny. You think I’m going to be entitled to something, as a business owner? [smiling at the idea] Oh that’s funny. I will make the request, I will keep you informed.
47His reaction reveals that he does not identify himself, because of his professional success, as being part of the target audience of the service. Similarly, Louis Resnais, a 59-year-old blind university professor, tells me that he chose not to “ask for help” by applying for the PCH in order to “leave that for those who do not have enough.” Geneviève Bertaux, a retired high school teacher (62), is concerned about the potential impact of this benefit on her estate. These reservations, vis-à-vis the PCH, from people who were previously not eligible for ACTP, help to explain the profile of PCH recipients—a profile that, in turn, fuels this representation: a 2011 DREES study shows that 71% of recipients of PCH and 84% of those in ACTP were economically inactive (Lo and Dos Santos 2011: 4).
Accessibility: the mobilizing potential of an unfulfilled promise of rights
48Making the built environment and public transport more accessible is probably the most promising provision of the 2005 law, and one which is now attracting most criticism in the context of the extension of the deadline for implementation and application of the obligation to provide accessibility to disabled people. The law of 11 February 2005 had in fact provided for the accessibility of sites and buildings establishments open to the public (“ERP” Etablissement Recevant du Public), residential and work places and public transport by 2015, the date from which criminal sanctions would be applied to offenders. In view of the delay in bringing them up to the standards (in 2015, the proportion of ERP that were accessible was estimated to be between 25% and 40%), [9] the government extended, by ordinance, the deadline for accessibility, allowing the actors concerned to sign “Scheduled accessibility timetables” protecting them for 3, 6 or 9 years against all legal proceedings. My reasearch took place while this postponement was announced.
49In terms of the effects of public policy, the life histories reveal an in-between situation in the implementation of accessibility. Those of my respondents who have experienced disability for several decades first noted an increase in the accessibility of urban space: vigilance strips, protected pedestrian crossings, audible traffic lights, lowered pavements, improved accessibility of public transport (tramways in particular). Among all my interviewees, however, the current mobility practices reveal the major obstacles that they continue to encounter—also confirmed by quantitative studies (Dejoux 2015): non-existent sound announcements in many subways, restaurants, shops and buildings inaccessible to people in wheelchairs … Due to the lack of accessibility of public transport, many people use specialized transport services that must be booked several days in advance, greatly limiting the possibility of improvising outings. In addition to the parameters related to the type of disability and the desired activities, the obstacles encountered vary greatly from one city to another, reflecting the decisive nature of the municipal level in defining accessibility policies. Raising the issue of the obstacles to mobility in the urban space led to frequent mentions of the difficulties encountered in access to culture (auditoriums inaccessible for wheelchair users, lack of audio description), as well as in various types of services (ATMs, software).
50Although the political context of the postponement might have encouraged the expression of discontent on this subject, the objective obstacles to mobility do not automatically give rise to complaints, and the degree of dissatisfaction expressed, if any, is not proportional to the scale of the difficulties encountered (Felstiner et al. 1980). Although it is not the only factor at stake (militant and occupational socializations—with two lawyers in my sample—also play a role), the generational effect emerges as a clue to ways of accounting for the lack of accessibility, between the description of a situation to which people have become accommodated and the denunciation of a situation that they are trying to change by various means. The interview situation can then be used as a platform for denouncing the inadequacies of the policy being pursued, according to an approach already identified by the researchers using biographical interviews in order to study legal consciousness (Engel and Munger 2003, Ewick and Silbey 1995).
51The context and modalities of how this criticism is expressed in the interviews help reveal the processes by which it emerges and its significance for individuals. This is why I will use this theme of accessibility to illustrate the contribution of a third interview analysis technique, the in-depth analysis of extracts, which pays particular attention to the context of enunciation as well as the sequence of topics addressed by the research participants. I will take the example of an excerpt from the interview conducted with Laetitia Roger (LR), a quadriplegic woman who, at the age of 40, has lived for twelve years in an independent dwelling with almost permanent personal assistance, after having spent several years in different rehabilitation homes. Even before the beginning of the interview, Laëtitia expressed her concern about the delays in gaining accessibility as soon as I mentioned the term “public policy” in my introduction—which indicates that the issue of accessibility-was a key on in her perception of disability policies. She returned to this theme in the interview, in the context of a question about her education, by saying that she had to confront the inaccessibility of urban space once she had left the institution.
LR: […] when you are in the structure, you don’t realize what you can have as problems since we are always with educators or the … There, the real problems, I’ve been having them for twelve years, as long as I’ve been here [meaning her apartment].
AR: OK. And what are these problems?
LR: The inaccessibility … The buses are OK, they are accessible, but you can’t take the metro, except line 14 which is completely accessible. The more it goes, the more we are marginalized. And the delay in getting the law on accessibility enacted scares me, because now, the new premises or the new bus lines will say to themselves: “It has been rejected so we do not care anymore.”, So we will be … it will be a little bit like going back to the 70s.
AR: Indeed. Can you tell me a little bit about how it happened when you moved here?
LR: … When choosing my apartment, I was told “You’ll see, in Paris it’s good, it’s very accessible.” […] But, over time, I began to think that Paris was not at all like the idea that I had of it. Pavements are not … It’s mostly the monuments. When you want to go to the library, it is not accessible … […] I went to a conference [in the autumn], on accessibility” and there were things that shocked me. There was one man who said, “Ah, but anyway, you do not have to have an access ramp on every building.” So we were not allowed to have a voice. And then he says, “All you need to do is ask a passerby, with a smile, to see if he can help you up the stairs.” That’s OK when you are in a manual wheelchair, when there are two or three [steps], but when you’re in an electric wheelchair, there’s going to be trouble!.
53This excerpt highlights several conditions for the emergence of a critique of the inadequacies of the accessibility measures: the first is the experience of inaccessibility, which only comes into play when one is in a situation of desegregation, if only partial (the specialized institutions are generally more accessible). A second factor that appears in this excerpt is the driving effect of the legislative context itself on the expression of criticism: both directly, through criticism of the delay in obtaining accessibility, and indirectly, because putting the issue of accessibility on the political agenda raises questions about the organization of the type of event being referred to, during which people with disabilities like Laëtitia may notice a mismatch between the remarks made and their own experience of mobility.
54But this excerpt also informs us about the meaning assigned to this question of the lack of accessibility and the decline of the public authorities in the matter: beyond the material difficulties of access, Laëtitia is also contesting the social status assigned to her as a disabled person—and this translates as “the more it goes on, the more we are marginalized”. Here we find an illustration of the importance of the statutory dimension of social inequalities (Ridgeway 2014) that crystallizes, at the time of our survey, the question of accessibility for people with disabilities. This is confirmed by several other interviews that address in a variety of ways the consideration due to people with disabilities when we discuss this debate about accessibility (for example, Chloé Lamarche believes that “it’s a bit like they take people for idiots”; a thirty-year-old lawyer deals with the matter in more legal terms, commenting: “What other minority could they do this to nowadays, to remove their personal rights? Foreigners, perhaps.”).
55This marginalization, that is both material (inaccessibility) and statutory (the symbolic marginalization of people with disabilities as a group) is also reflected, for Laëtitia Roger, in the exclusion she experienced in terms of the right to have a voice in more political contexts, such as the one mentioned at the end of the excerpt. The question of accessibility is therefore important, not only for material reasons, but also for what it symbolizes in terms of social status, and possibly descriptive political representation (representation of persons with disabilities in decision-making concerning them) (Pitkin, 1967). These two dimensions are confirmed in another exchange that occurred at the end of the interview, when Laëtitia returns to the theme of accessibility in response to a question aimed at addressing her perception of the social status of people with disabilities (from the topic “other people’s views of disability”):
AR: During the course of your own life, do you feel that there has been a change in the way others view disability?
LR: No. On the contrary, I have the impression that we have gone back to the 1970s. From the point of view of rejection, how we are seen, accessibility. Especially since the postponement was …
AR: The report was voted …
LR: That’s it.
AR: How did you experience this episode?
LR: Badly.
AR: […] What did you think of all these debates?
LR: The people who voted for [these laws], are not in our place. I would say to them: “Put yourself in my wheelchair and I’ll take your place for the day. On the other hand, I’ll also tie your legs together, and when you want to go to the toilet, you will see what that’s like.”.
57The proposed explanation of the postponement, referring to the fact that politicians as a group do not have any experience of living with a mobility impairment, is emblematic of a criticism frequently formulated by the interviewees (although otherwise one that is not very present in public debate) about the under-representation (or even the lack) of people with disabilities among policy-makers, particularly those responsible for disability policy—a reality that contradicts the invocation of “citizenship” and “participation “in the law of February 11, 2005.
58The legislative change thus gives rise to two sorts of criticism: because the reform pushes back an acquired right, and by the perception of an exclusion of people with disabilities from the decision-making process, contrary to the promotion of “participation” by these same decision-makers. If the promises of unfulfilled rights thus seem to contain the potential for political mobilisation, according to a classic effect of policy feedback (Pierson 1993), we must not overestimate the scope of the declarative and symbolic dimension of the policies (the statement of rights on one hand and the failure to put them into effect on the other). Indeed, the postponement of accessibility is differently received according to generation (but also in relation to whether they have experienced activist or occupational socialization). Among our interviewees, it arouses the most opposition among people who have experienced a life that has been at least partially desegregated (inclusive education and/or independent housing). A life itself favoured by the long-term transformations of public policy, which supports the relevance of a reception approach that can grasp in a joint way both the outcomes and the uses of the public policy (including the protests against it to which it can lead).
59* * *
60To provide some answers to the question of the impact of changes of public policies on the social experience of disability, I have used an approach that examines their reception, based on biographical interviews, in order to capture both the outcomes and the uses of public policies by placing them in the context of the social experience of individuals. The contributions of this study are of three kinds.
61This research leads firstly to a number of provisional conclusions concerning the consequences of the evolution of disability policies in France: a partial desegregation hindered by the many obstacles thrown in its path in education and employment; the principle of compensation, which, and although it has real effects, is also strongly assimilated to a logic of control and to a social rather than universal service; an accessibility policy whose disappointed aims can have a politicizing effect.
62Then, in each of these areas, the analysis of life histories shows the value of simultaneously capturing the effects and appropriations (both material and subjective) of public policy, which are in fact intertwined in personal narratives: for example, the school integration policy helps to open up educational opportunities, but access to mainstream education also involves active approaches to challenging obstacles to integration; financial compensation for disability partly fulfils its objective of autonomy through its misuse; opposition to the postponement of accessibility measures must also be understood in the context of partially desegregated lives as a result of changes in public policies. This research thus contributed to establishing the theoretical fertility of the concept of reception of public policy, making it possible to grasp these two dynamics simultaneously.
63Finally, from a methodological point of view, the analysis of the reception of disability policies in the three domains that were selected illustrates the contribution of the three different techniques of analysis of the biographical interviews combined in this project: portraits, thematic content analysis and in-depth analysis of excerpts.
64The scope of the conclusions that can be drawn from this study must, however, be qualified in two ways. On the one hand, since the sociology of disability is a relatively new field in France (Ville et al. 2014), the analyses proposed are exploratory in nature, and need to be supplemented by further work on each of the topics addressed. On the other hand, the focus deliberately placed on the individual reception of public policy only allows a partial approach to the way in which its implementation orientates its reception (an effect better analysed by studies of policy implementation). It is ultimately from the combination of these different points of view that a more complete understanding of the consequences of public policy will emerge.
Notes
-
[*]
Translated by Peter Hamilton with the support of CNRS-INSHS.
-
[1]
This work is supported by a public grant overseen by the French National Research Agency (ANR) as part of the “Investissements d’Avenir” program LIEPP (reference: ANR-11-LABX-0091, ANR-11-IDEX-0005-02).
-
[2]
In the sense of a filter that is both descriptive and prescriptive that guides public policies (Muller, 2004).
-
[3]
Law no. 75-534 of June 30, 1975 of orientation in favour of disabled people and Law no. 75-535 of June 30, 1975 relating to social and medico-social institutions.
-
[4]
Établissement et service d’aide par le travail, sheltered employment organizations, previously known until 2005 as Centre d’aide par le travail (CAT).
-
[5]
The first names and surnames of the participants in the research project have been changed.
-
[6]
Service to support the acquisition of autonomy and integration at school
-
[7]
Association de Gestion du Fonds pour l’Insertion Professionnelle des Personnes Handicapées, Association for the management of the fund for the occupational integration of disabled people.
-
[8]
The research carried out on the allocation of rights in the MDPH also shows to what extent the granting of this payment gives rise to internal debate within the administration (Baudot et al., 2013, Revillard, 2016).
-
[9]
Claire-Lise Campion and Philippe Mouiller, Rapport de la commission des Affaires sociales de l’Assemblée nationale sur le projet de loi ratifiant l’ordonnance n° 2014-1090 du 26 septembre 2014 relative à la mise en accessibilité des établissements recevant du public, des transports publics, des bâtiments d’habitation et de la voirie pour les personnes handicapées, 20 mai 2015, p. 13. “Report of the Social Affairs Committee of the National Assembly on the draft law ratifying Ordinance No. 2014-1090 of 26 September 2014 on the accessibility of establishments open to the public, public transport, housing and roads for the disabled, May 20, 2015, p. 13.
