The rights of the disabled are violated

Despite the existence of many inclusive measures, people with disabilities struggle to assert their rights. Faced with these vulnerable rights, individuals protest and tinker to break with the feeling of being assigned to second-class citizenship.

In our societies, the matrix of representations of disability requires a damaged body, a distorted mirror with which it is difficult to identify. Indeed, on an anthropological level, the human body establishes the boundary of personal identity. If thinking about the body is another way of thinking about the world and the social bond, then a disorder in the configuration of the body is a disorder in the coherence of the world. And the person affected by a disability pays for it with the discomfort it engenders, and by a social status that is often depreciated, yet already conquered with great difficulty, and by his forgetfulness in the social space that has long prevented him from moving around as he pleases and engaging in desired activities. His integration into the world of work or social life requires solid intimate resources and an effort on his part from his audience, a constantly renewed fight. All social relations pass through the body, and if it does not conform to expectations, this hitch directs all interactions in a frontal or more disguised manner. Alteration is difficult to tame except for those close to you because it contaminates social relationships and leads to feeling vulnerable yourself.

Alteration is socially transformed into stigma, difference engenders disagreement. The mirror of the other no longer illuminates one’s own. Conversely, one’s intolerable appearance calls into question one’s own identity for a moment by recalling the fragility of the human condition, the precariousness inherent in all life. An abyss of meaning cracks the familiar and induces anxiety, the trouble that nothing that is is really given. The disabled person is a threatening mirror of oneself, recalling the dreadful possibility of one day being in the place of this man or woman, or of having been able to be, because they are part of the same human condition while no longer being in the image of the others around them. Recourse to rights is one of the ways of circumventing this social resistance, but the laws do not apply without ambivalence.

Anne Revillard’s book, written with clarity and finesse, sensitive and rigorous in its analyses, fascinating to read, rightly highlights the vulnerability of the rights of people with disabilities, their problematic effectiveness for people with visual or motor disabilities in France. For a long time, disability remained a medical and individual concept, we spoke of physical, sensory or cognitive disabilities, but for several decades, it has now been perceived as associated with poverty, poor accessibility, a subordinate position within the social bond. A certain number of works including those of Erving Goffman (Stigmata. The social uses of disability (Midnight) ; Asylums (Midnight) or Robert Murphy (Live life to the fullest (Plon), among others, have drawn attention to populations that have long been made socially “invisible.”

In many countries, public policies and legislation have sought to reduce inequalities linked to the social treatment of disability, but not without difficulty in application, such is the subject of the book. The notion of disability covers a judgment of incapacity, lack of competence, vulnerability, dependence. It is often referred to work. It first developed around a medical perspective that was still largely dominant, but which gradually opened up over time to a more ecological and social perspective from the 1970s. It mainly involves the body and the senses, in terms of deficiency, but also the quality of intuition of the world (debility, etc.). It induces in its wake public policies, institutional, legal and associative mechanisms.

Often, people in wheelchairs serve as a model that obscures other forms of disability. However, many heterogeneous situations are encountered, not only multiple deficiencies, but also lifestyles and relationships with the world. Disability results more from social consequences than from a physical attribute. And with regard to the accessibility paradigm, it is essentially a fact of situation, not an intrinsic nature of the person. Anne Revillard shows that in recent decades, disability has been analyzed above all as a form of social injustice to be repaired and no longer only as a personal tragedy primarily mobilizing the person affected. Rights have been centered around a desire for equalization with the general population. Inclusion policies now mobilize the principle of inclusiveness and accessibility to the greatest number of places and services, therefore leading to the need for specific arrangements.

If disability in any way implies a dissonance between the individual and his environment, it is then appropriate to arrange the environment socially and physically to make it practicable without loss for this same individual. In recent years, the concern to promote inclusiveness is an attempt to dissolve as much as possible the inconveniences experienced by these men and women. In all its forms it implies more social justice and strengthens the quality of life of all, it is universal in its principle by taking into account individual singularities linked to aging, illness or disabilities. It promotes the autonomy of people by broadening their relationship to the world and to others.

Anne Revillard’s work is based on solid research on the methods of mobilizing rights in public action between discourse, inscriptions in the law, public policies and the positions of the actors concerned. She relies on remarkable documentation, but above all she does not stop at a remote analysis, she conducted in-depth interviews with 17 women and 13 men, aged 23 to 75, testifying to a visual disability (from low vision to total blindness), and fifteen with a motor disability. In two thirds of them, the disability was diagnosed during childhood or adolescence. Anne Revillard also does not hide the social conditions of the population encountered. All the analyses are embellished with first-person testimonies, often moving, and always significant of the difficulties or facilities encountered. Anne Revillard successively addresses the right to education, rights relating to work, social rights. She rightly speaks of “vulnerable” rights to move the cursor away from the idea that people with disabilities are a kind of moral category doomed to protective and non-egalitarian interventions. If rights are “vulnerable” it is because their application comes up against multiple constraints clearly highlighted by the testimonies. The ambitions of inclusiveness in the school and professional world, equal participation in the world of work, making places and transport accessible, are still far from the mark, there is still a lot of work to be done.

In terms of education, schooling has progressed well, even if access to schools or universities does not always imply inclusion. Necessary arrangements are sometimes lacking. The right to education, from nursery school to university, remains one of the battles to be fought. Social rights also raise questions: “Labeling, feeling of strong social control, forms deemed unsuitable, excessive delays, lack of information” (198) and induce a distance between intentions and their realization. Inclusivity no longer only concerns people with reduced mobility and their access to space, but also includes the use of and access to social and cultural activities, school, university, the world of work, transport, etc. It concerns not only architecture and people in wheelchairs but other social categories (blind, hard of hearing, people with mental health problems, multiple disabilities, etc.). The built environment often requires serious redevelopment to restore equality of access and use of places.

But, Anne Revillard insists that in the face of these situations of lack of public action, the people concerned do not remain passive. The realization of the rights of disabled people also mobilizes them in their daily lives or their citizenship, through explanation, claim, threat, legal action, etc. “Beyond the specific situations in which they fight to obtain the occasional realization of a right (access to an establishment, the implementation of an arrangement), many people speak out publicly about the denials of rights they face, particularly through digital media (blogs, social networks)” (200). Having rights is not enough; sometimes, you have to impose yourself as a subject of law, and therefore become artisans of their implementation through a daily policy mobilizing both public and political action.