Every culture is defined by its behavior towards those who are often minority, who by their difference, innate or acquired, can not be or are not similar to the group as a whole. It is these differences that are often felt to be disturbing, such as an embarrassment for evolution and survival, or even a more or less definite danger for the future of the community.
According to the modes of civilization, such minorities are the object of persecution or veneration, in short, of particular considerations, witnesses of the ideas prevalent in the said civilizations, ranging from total rejection, exclusion or killing, to the quasi mystical valuation of difference, the subject presenting such a difference being then elevated to the prestigious rank of sorcerer or shaman. It enjoys a special status within the myth of origins and ultimate ends. Our modern Western cultures, where science provides objective illumination, have made these differences an object of study, and hence conferred upon them:
– a scientific status if only by the study of causal disease;
– a sociological status, reflecting on the place of a patient who is no longer a different subject but a patient.
Thus, the generous idea of providing effective support and appropriate care to each person was mobilized. Quite naturally, such works fit into the framework of medicine as it has existed since Claude Bernard, bringing a fresh perspective on what came under obscurantist representations more or less terrifying.
Thus we will try to define in what ways differences linked to an incomprehensible chance resonate on the integration of those who carry them and seriously burden their possibility of being similar to the others but also, we do not take care, their possibility of not being able to have the same rights as the others.
This notion of biological hazard, of a real “coup of fate”, we will attempt to codify it, to measure it, and today it would seem to evaluate it.
It is here that the notion of handicap, that “hand to the hat”, is drawn up, this drawing of life, which, in founding inequality, needs to be taken into account, no longer to exclude and reject, but to accept and unify.
Men are born free and equal in rights, but not in biology or pathology, and it is the ethics of a civilization to ground upon these disadvantages in the light of what will be precisely the “age of enlightenment, the progress of science.
Handicap and Disabled:
Disability in recent decades is interpreted according to, one might say, the “ideas of the moment”. The very definition of disability, which is often fluctuating, is gradually becoming the common denominator that unifies and justifies the existence of a set of data that is understandable to all.
However, it bears various names in every period of our history.
For example, Pinel’s fool, the countess of Ségur, the dangerous madman of the law of 1838, the weak of the secular school, the dangerous alcoholic of Zola, the helpless victim of the Great War of 14/18, and many others, as many social or mental patients, as a function of the changing gaze of politics towards them.
Thus, what changes have occurred since the deviant fool rejected at the asylum, the imprisoned asocial, until the sick, recognized and integrated into our hospital services!
It is therefore understandable to what extent the term “handicap” federates, in its social aspect, in which the legal order of defense or protection of the individual intervenes as much as the economic order with the consideration of its possible productivity, there indefinable or exclusive of each other.
Better still, the handicap, by also allowing to evaluate professional capacities to carry out a craft, in the artisanal sense of the term, becomes an element of recognition of the subject for himself by granting him a status of citizen.
And yet, the picture is not as beautiful as it seems. And beyond the good intentions, the shadow is always, and always is, linked to the mistrust of what is not in conformity or identical to the common model. Seen from this angle, disability disturbs the seemingly established order, and imposes on each of us a reflection in the etymological sense of the term, on our own existence in the face of what is not sufficiently conforming or in accordance with our usual equilibrium.
Thus, the links between culture and disability may appear to be linked to the ambiguity of the concept, to its concrete application, to the ambivalence of our feelings and to its conceptualization.
Here we find a “residue” of the archaic fears, but how much present, linked to the human psychic invariants: impulses, fantasies and formation of the unconscious.
This accounts for the complexity of the concept of disability, a complexity linked to the weight of subjectivity: this seemingly neutral social concept carries with it, in a often subtle and unspoken way, unspoken, unsung.
Handicap and Mental Deficiency:
Backwardness, mental deficiency, may represent the paradigm of disability, not only in the strict sense of the word, but also in the evolutionary sense. They are in fact more or less fixed, the evolution is uncertain, according to the eventual aspect, and also participate in the notion of chronicity, within the framework of the evolution inherent in their underlying pathology.
It is easy to understand the point at which it is not a question of fixing a possible evolution in the name of an immediate rigid representation.
To avoid this pitfall, as much in adults as in children and adolescents, conceptual tools have been developed that can put into perspective not only the various forms of disability but their evolution. It was this last that had to be made quantifiable, through research leading to the construction of real concrete tools (scales, classifications), usable as much from a medical, psychopathological and social point of view.
These tools have given the legislator elements of understanding linked to the development of a possible pathology, sometimes psychological disorders, inviting him to reconsider periodically the notion of disability, not from a diagnostic point of view, but from a prospective perspective .
In the adult, Wood’s classification is for chronic diseases. It has been adopted by the World Health Organization (WHO), insofar as it considers health status from the point of view of somatic, psychological and social well-being.
This classification was initially an epidemiological instrument.
It remains very useful for carrying out a prospective assessment of the resources and capacities of a subject, making it possible to confront the clinic and the personal situation of the patient.
Recall that Wood’s classification dissociates the overall concept of disability into three components: impairments, disabilities, disabilities or disadvantages. Each of these components may be at issue with respect to mental impairment.
For Wood, impairment is the loss of a psychological, physiological or anatomical structure or function, and is not directly related to a specific disease. It can be durable or transitory.
Mental debility can be examined in this light. In the case of intellectual disabilities, the new WHO classifications (International Classification of Mental Illness (ICD) 10) have also played a significant role in psychosocial factors. It should be noted that the new rating defining mild, moderate, severe or deep mental retardation, based on an intellectual quotient of less than 70, thus eliminates the mild mental deficiency of the debility framework (IQ between 70 and 90) .
Disability is a total or partial reduction in the ability to perform an activity. This incapacity characterizes the possible possibilities of the individual, but not his person.
Disability or social disadvantage results from a disability that limits or prohibits the fulfillment of a normal role within the group.
French Classification of Mental Disorders of Children and Adolescents, and Classification of Disabilities:
In order to avoid setting and fixing a situation whatever the cause or nature, in too arbitrary a manner, on the basis of often neurobiological parameters, Misès et al have developed two classifications :
– the French Classification of Mental Disorders of Children and Adolescents (CFTEMA). It defines two axes, clinical (listed in nine categories) and etiological / environmental;
– the classification of handicaps and disadvantages which lists the different aspects of these.
These innovative and dynamic tools as well as concrete, avoid the pitfall of fixing everything, which is too reducing, introducing the notion of scalability in time and space.
Using these tools, caregivers can better visualize, in a subject, a creative dimension masked by a symptomatology of appearance deficit. The latter can sometimes prove to be only the reflection of the resignation of a surroundings invaded by a quasi-depressive pessimism.
Handicap and transition to adulthood:
In adolescence, young adults with disabilities have already come a long way, marked by family and school interactions in special education.
As a teenager, he leaves the field of “school”, that of the “professional”, an area that he will have to deal with at the same time as his family, which must face the mourning of a certain number of illusions.
However, any encroachment of the family dimension on the individual dimension, any confusion, can only be dangerous as well as ineffective. As in the early years of life, the various actors are therefore invited to respect the work of each one. Yet, nothing is simple, sometimes the impact of family subjectivity is sometimes heavy. Indeed, as in the days of school guidance, parents again encounter well beyond the hazards associated with the transition from childhood to adult life, the indestructible and painful “wall” of disability, with what it carries of images of exclusion and of compulsory failure.
In the same way, in a mirror, the psychological evolution of the subject himself, caught up in prolonged adolescent conflicts, has to face the “endogenous” perturbations linked to his disability itself, and “exogenous” encounter with the workplace and the social milieu in general.
In the field of mental retardation or retardation, whatever the cause, the relationship with the environment is essentially a function of the subject’s understanding of the interrelationships with his / her peers, the workplace. What is its degree of independence or autonomy from others? What perception does he have of himself?
How can he manage his status as a young adult on a day-to-day basis?
A necessary evaluation then makes it possible to propose an aid, an activity, a work, according to the range of possibilities of the subject.
Mental disability, which can determine the attribution of disabled status, should not favor social exclusion, for example, by the absence of paid work (it can be noted that in this respect , the law does not provide any definition of the term handicapped and deferred to the judgment of the expert, in this case the departmental commissions to which we will speak later).
It is therefore easy to understand the difficulty of identifying, as regards mental deficiency, a status which does not necessarily belong to the disease in the strict sense. There are disabilities without disease. In some cases, the problem remains essentially psychosocial, with the subject organizing itself in a regressive fixation of symptoms, blocking any opening to the outside, yet a source of possible progress.
The psychological dimension to be taken into account is therefore complex, linked first to the idea that the subject has of himself, tinged or not with depressive or aggressive affect, violence or resignation. Such states may in fact succeed one another, or even coexist. From this perception of self depends the relationship with the other and the professional environment, felt sometimes as a help, an invitation to be better recognized, sometimes as a constraint, even a punishment.
Those working with young adults with disabilities need to be aware of these risks inherent in the disability process itself.
Indeed, the concept of labor, which is so ambiguous and which is the subject of regulations in our societies, involving both economic necessity and the weight of politics, is very differently integrated by subjects with mental disabilities.The right to work, access to a trade, despite obvious psychic difficulties, is often a highly rewarding requirement for them, in a universe where the notion of paid work is more often depreciated than sought, suffered, accepted. There is of course the most symbolic aspect of the concept of “work”. Having a job or performing an activity for which you are paid (“any penalty requires salary”), gives many of our young patients a status of citizen.
However, it is up to us to respond appropriately to this highly respectable demand for self-image. For this reason, any host organization receiving or choosing to work for the integration and well-being of mentally handicapped persons must reflect on the nature of the tasks proposed to them, in the light of the analysis of mental disorders related to impairment.
We must insist on the positive aspect of all creativity in the subject, whatever its nature: the making of objects in small groups, in which everyone participates in the work of all; in order to avoid undue pace and to preserve the best working capacity; recreation, relaxation areas, within the same day to promote recovery, etc.
It is necessary to orient oneself towards tasks which the subject can perceive as much the beginning as the end: these are often tasks that can be realized in a relatively short time.
It is necessary to vary the tasks in question, and even the places where they are exercised.
The rhythms of the seasons are perfectly well perceived by the deficient subject, and their repetition is a source of stability, hence the interest of works close to nature: gardening, market gardening, horticulture, etc.
The contact with the animals is particularly safe, hence the interest of breeding works for example.
Finally, the aesthetic dimension is often forgotten, and yet so necessary to stimulate creativity! It must exist in a primordial way and be reintroduced and varied within the activity. Hence the interest of the choice of spaces, colors, in the layout of the premises.
When the work is paid or wage-paid, workers’ rights apply of course: it is the law. However, the management of the gains is not self-evident and requires a necessary learning, carried out for example by the educational team and / or the tutor when there is one.
Such warm “environmental” aids, respecting the person through his handicap, are sometimes quite carical, and risk falling behind an apparent surface support, enhancing recreation, relaxation and letting go, as reflection on oneself.Such regressive behavior is obviously very detrimental to the development of the subject.
It is often the work of associations that also provides support, which is a very effective means of preventing marginalization.
Whatever the institution or host institution, each team must also develop its life projects on the basis of dynamic concepts, to be regularly challenged in order to progress. This is sometimes very difficult for the staff themselves. It is true that, in order to work on subjects with such difficulties of social integration, it is necessary to have a real personal commitment, which does not cause distress or depressive moments that are too intense, but which does not exclude possibility of difficult experiences.
Hence the interest of developing a “home” spirit within institutions where everyone, whatever their function, has a well-defined role, recognized by others, a role fulfilled with rigor and flexibility.
Here we find the unavoidable dimension of institutional work correlated with the intrapsychic work of the residents of the institution.
All this is not improvised and invites to put in place specialized trainings where the different strategies to adopt and the way to manage them are reflected. Social associations and social workers thus find a forum of exchange that is sometimes conflicting, but always fruitful.
Another relational field remains very important, that of working with and with families. It is often necessary to “navigate” between total rejection and overprotection, knowing how to develop bridges of understanding sometimes very fragile.
It is up to each institution to establish a framework, a true internal regulation, with the aim of avoiding, as far as possible, conflict or abuse of family intrusion. This regulation, the subject and his family must know him, or even participate in its elaboration. It must be flexible enough to deal with situations of near-emergency, and then to avoid moments of panic or narcissistic collapse for a mentally deficient subject in a critical phase.
Educational teams or social workers encounter, through the work of the framework, a vast field of reflection that is apparently lateral to everyday work, but which is so efficient for the stability of the institution: it is around this crucial point that the institutional life on the one hand, and extra-institutional life on the other.
Problems related to the different structures:
Existing structures are well described and listed by Massé and Bonal. We here only make a few remarks relating to the relations between these structures and the mentally deficient subject, referring to the notions already stated.
TECHNICAL GUIDANCE ORIENTATION AND RECLASSIFICATION COMMITTEE (COTOREP):
It is the real pivot of the system. There is one per department. It manages the future of the disabled from the age of 20, in continuity with the CDES (Commission for Special Education) devoted to the child and the adolescent.
It is composed of members appointed by the prefect and defines disability as an expert. It has two sections:
– one manages cases where the disability is compatible with a reclassification;
– the other appreciates the disability rates and especially the aptitude to work.
The Commission also has the function of allocating a certain amount of money to disabled adults (AAH), if it deems it necessary, depending on the condition of the disabled person. To this allowance is added the free reimbursement of the expenses of care.
This commission is therefore responsible for directing the disabled person to a competent institution or department corresponding to his / her case. It must however take account of the wishes of the person, depending, of course, on the possibilities of reception of the establishments.
The place of residence of the disabled determines the competence of each COTOREP.
The commission may be seized by different persons or organizations, and in particular by the disabled person, his family or his legal representatives.
It has a permanent secretariat and a technical team organized around a “core group”, which can be staffed by technicians, under agreements between various bodies and the Commissioner of the Republic. A detailed medical file is required, which includes a psychological assessment (psychometric and projective tests), or even a precise professional project, guiding the technical team in the choice of institution.
The decisions of the COTOREP must be reviewed in less than 5 years, 10 years in case of irreversible handicap. Such a revision makes it possible to avoid fixing the patient in his troubles.
A review may also be carried out within five years, at the request of the person concerned, the debtor organizations and the Commissioner of the Republic. This non-negligible aspect of flexibility makes it easier to change activity, and to orient a person towards a better-adapted institution, for example when the professional possibilities of the subject change.
Preparation and follow-up teams for the rehabilitation of the disabled have been set up to promote, at all stages, rehabilitation and professional life. Experience shows that the subject, due to a relative insecurity related to his / her disability, finds safeguarding advice and support from members of such teams.
They are organized around a true “entrepreneurial spirit”, since they must aim above all to reduce any operating deficit, while integrating into the normal market economy. The hired worker is considered as a full-time employee. Find here the employment of handicapped persons whose mental disability is not very disabling.
The pitfalls of such structures remain the need to accept markets: the notion of productivity is not necessarily negligible; the repetition of tedious tasks is sometimes necessary.
In any case, good integration within such structures can pave the way for ordinary production jobs.
The subject then encounters all the problems posed by the “labor market” in our societies!
Centers of help through work (CAT):
The WCB combines a work-release structure with a medical and social structure providing the necessary care for the pursuit of a professional activity.
As far as work is concerned, it is carried out in conditions adapted to the disability. Persons who are incapable of working in an ordinary environment or in sheltered workshops and whose working capacity does not exceed one third of that of an ordinary worker are admitted to the CAT. However, these people do not have the status of employees.
The patients and mentally handicapped naturally find their place within certain CATs which aim to work in the specific field of mental handicap. It is precisely for such boarders that the professional project must integrate the notion described above of short duration task, creativity within a quality aesthetic or architectural support. Moreover, the emphasis here is on the “relational fabric”, with the entourage, the associations and the families, hence the interest of setting up within the CAT, sports activities, leisure, opening to the outside.
Better still, accommodation can be juxtaposed to the CAT, for example by creating a home. It is then a parallel structure, the management of which is separate from that of the CAT in terms of accounting and finance. This association between hearth and CAT proves to be particularly effective over time, and above all, we will come back to it in the face of the aging of the mentally deficient subject. Finally, this can be a good solution for disabled people living in a couple.
They address a population more heavily affected than that of the CAT. No paid professional activity is proposed in such a structure: it would be devoid of meaning in view of the gravity of the disturbances. On the other hand, relational difficulties with the often rejecting environment are taken into account (even the stay in an occupational home is not necessarily final).
Orientation in occupational focus may also represent a reflection time before the switch to CAT. Some institutions associate the two formulas and, at the price of a certain flexibility, can play the complementarity of one in relation to the other.
In the same way of course, the stay in the occupational home can succeed the stay in CAT, and become a necessity according to the aggravation of the troubles. In any case, it is up to the COTOREP to endorse the proposals made by the institutions. Here again, one finds his role as an expert already quoted.
Specialized Homes (MAS):
They receive people with severe motor or sensory impairment, or intellectual disabilities with no predominant psychiatric disorder. In this respect, a stay in MAS may be offered for the mentally handicapped with multiple disabilities.
Theoretically, the population must be admitted before the age of 60.
The main aim, given the nature and composition of the “ideal” team (general practitioner, psychiatrist, rehabilitation worker, nurse, psychiatric assistant, animation staff), is an alternative to hospitalization. Hence the ministerial recommendation to establish such structures (30 to 60 beds maximum) close to places of care or animation.
These homes offer a medical care provided by the Social Security, and accommodation taken care of by the person concerned or social assistance. They receive adults with severe disability.
This includes severe mental deficiencies with loss of motor autonomy. Care often requires the use of specialists, the cost of which can be high, making it difficult to set up such structures. Their number is still notoriously insufficient given the population to be accommodated.
Vocational Rehabilitation Centers (CRP):
Such centers have recently been set up, after orientation by COTOREP, to propose either a pre-orientation, when leaving the hospital environment, insofar as a change in professional activity is a necessity or a training .
This training is aimed in particular at persons with a mental disability who may subsequently gain access to work in an ordinary environment. Indeed, the CRP proposes a training type FPA (vocational training for adults) with some adjustments, training which is sanctioned by the obtaining of a diploma.
These types of structure, due to the recent significant increase in psychosocial distress, especially in relation to social rejection / mental retardation / alcoholism / substance abuse or severe marginalization, are faced with unusual demands it is above all a complex task. This psychological work should be centered on the valorisation of oneself, taking into account chronic depressions of the young subject totally rejected from the social system, quasi “bogged down”.
There is an urgent need to develop new care modalities for such topics.
Review and Prospects:
There is currently a whole fringe of a young population which, between psychiatry and social disability, unemployment and marginalization, raises new medical and social problems. We understand that mental deficiency pays a heavy price to this social pathology, a real economic gangrene to be treated urgently in the context of our “evolved” societies.
The creation of the minimum income of integration or RMI (law of 1 December 1988) aims to eliminate all forms of exclusion, the insertion of all this population in difficulty becoming a national imperative. Between proven psychiatric illnesses predating social distress, or induced by this same distress, and the problematic of exclusion with a definite sense of rejection, alcoholism, failure and other passages to the act, it is difficult to to assess what, in these subjects, belongs to the strict medical aspect, or to social care (reintegration or even insertion).
This dichotomy is perfectly debatable, for the two aspects, medical and social, are so closely intertwined that the current solutions, AAH or RMI, no more respond to these new clinical pictures . In other words, to what extent this problem must preoccupy politics before the legislator, and this, at the most sensitive point of the system: the economic aspect.
Another problem concerns not the population of young people who are deficient but those of the deficient who are aging. The person with a severe mental deficiency, whose causes are essentially organic or linked to a difficult lifestyle, ages, one might say, is faster than the population supposed to be normal. Its actual work potential also decreases faster. For this population, however, the age of retirement is set at 60 years. Often deprived of family, without any outside reception possible, the proposed solution proves to be the stay in retirement home, stay whose number will multiply, due to the prolongation of the lifetime. Classical retirement homes receive people aged 80 years or more, and cohabitation is not without new problems, as mental impairment disorders also worsen with age.
This is to say the need to create new reception structures in our departments, facing this new social problem of the aging of the mentally deficient person.
The social alternative must be original. It is not a question of opening isolation places, but also and always, in a collaborative framework, to provide the necessary medical and social care. Associations, local authorities, possibly with the help of the psychiatric sectors, proved to be privileged interlocutors.
It is now clear how important it is to open small 20- and 30-bed structures, not large dehumanizing complexes, and how innovative and responsive the above-mentioned occupational structures are. problems caused by the psychopathological mutations in our populations of young subjects.
It is a matter of maintaining what constitutes the nobility and ethics of medical and social commitment: to provide, beyond the necessary care, the humanizing aid that is possible, desired and desirable for each, with what constitutes the value of the subject human, self-reliance based on self-esteem and respect for others.