The tests and trials of counter-transference

3The clinical encounter with the disabled subject and their family often mobilises strong counter-transference reactions. Simone Korff-Sausse (2007, p. 40) explains that the absence of psychoanalytical research works relating to this issue among clinicians is due “to the impact of an irremediable and invasive reality or that of a traumatised and traumatising physicality, whose mesmerising effect causes a sideration or a rejection producing a blocking of thought”. The invasion by the reality of organicity, of medical knowledge, of rehabilitation, of daily care and the presence of medical devices (corsets, wheelchair or crutches) forms an obstacle to attending to the psychological issues of events and of unconscious fantasies relating to the invasive and traumatising reality of the disability.

4Counter-transference is a trial for the therapist. This is largely due to the fact that the subject in a situation of disability comes knocking on the door of our deepest anxieties, or infantile fears and our own depressive positions. As a result, the desire for reparation lies in wait for us and has to be worked through so as not to succumb to an attitude of verbal hyperactivity (multiple interventions, filling in the silence, trivialisation, false reassurances, etc.) that fails to allow the person to express their phantasms and propels them (when their verbal skills so allow) more into a functional discourse that distances them from a work of symbolisation and subjectivation. The clinical encounter is only possible if it calls on the therapist’s desire to be there, present for the other, capable of seeing herself in the other, however strange they be, to recognise oneself in the other and in the image the disability reflects back. An image that Korff-Sausse (1996) describes as that of a “broken mirror”. Indeed, letting the “I” of the subject find expression would mean that we are open to hear what, in each and every one of us, is also wounded. It is when we can recognise the child as bearer of a mark and that mark disappears that we listen to them in what they have to tell us of the depths of their psychic life.

The family stigmatised, sick and to be cared for

5Over the last few years, there have been an ever greater number and increasing variety of works devoted to questions relating to the “family concerned by a disability”. Moreover, medical, educational and rehabilitational care has allowed children’s life expectancy to be increased, resulting in greater consideration being given to the process of adolescence and related issues of sexual and emotional life (Vaginay, 2001; Mercier et al, 2006). While the theme of adolescence is still barely studied, that of the beginnings of adult life is still truly lacking in the literature.

6Meanwhile, families demand that scientific works be conducted so their children can benefit from progress in medical care, technical aids and educational methods. While the first associations of parents clamoured for the creation of reception facilities, care and education, they now seek to take part in orientating research and legislation on disability. They have contributed through militancy to a social change that has found expression in legislation as embodied in the French laws of 2 January 2002 on “social renovation”, 4 March 2002 on “improving the health and health democracy system” and above all of 11 February 2005 on “equality of rights and opportunities, partnership and citizenship for disabled people”.

7Representations of disability shape encounters both with people generally and with close relations (Giami et al., 1988). The subject with a deformed body, wearing an orthopaedic device, with a look that shies away, lacking in articulate speech or with disturbed language may arouse rejection rather than empathy, pity rather than solidarity. While they may fascinate, this will be more in horror than in admiration. Beyond the stage of the infant or very young child, their dependency on others makes them a figure of devalued humanity in our modern-day society (Sticker, 1982; Korff Sausse, 1996) whose ethos favours a form of success centred on independence and sculptural and intact beauty.

8While social representations of disability have evolved greatly, some “handicaps” nevertheless remain more mediatised than others, as with the child affected by Asperger’s syndrome receiving greater attention than the autistic child with an intellectual and/or motor deficiency. Moreover, deficiencies, dysmorphisms and dependency do not arouse the same reactions depending on whether the person concerned is a child or an adult.

Families and professionals: building together and thinking together

9Practitioners and researchers are increasingly making claims for the co-construction of interventions between families and professionals (Bouchard et al., 2001; Titran, 1983 and 2004). Such partnerships can concern training, how provision of care is devised or again research.

10When the presence of professionals is experienced as warm and comforting, just what is needed for those concerned not to feel infantilised (Fustier, 1999), then the parents more readily manage to feel competent and legitimate in their parental role (Lévy, 1992). Indeed, as in the image of Winnicott’s “good-enough mother”, professionals have to offer assistance in relation to what the family is capable at that moment of accepting. This is all the more so in so far as the cultural, religious and philosophical dimensions of the families as also of the professionals are taken into account (Gegout, 2008).

11With respect to mental care for families, we have moved on over the last fifty years from the idea that the family makes one of its members sick (Laing Cooper, 1974) to that whereby it is the group as a whole that is sick (Ruffiot, 1984) and then, finally, to the idea that the family is both the problem and the solution to the problem (Auloss, 1995). Emphasis is here placed on competences, on the knowing, attitude and know-how of the parents and also on analysis of their personal resources and those in their environment. All this while the strangeness of their child and the specialised care they need sometimes lead them to forget the validity of their parental techniques derived from their family background and that retain their full effectiveness for that particular child as for their brothers and sisters.

12In his talk on the work of parental guidance, Serge Lebovici used the image of the “travel guide” to illustrate the relations between professionals and the family, a guide helping them follow a tough and dangerous path and accompanying the travellers along their way. This dual aspect of the voyage and accompaniment provides a good metaphor for what needs to be done for the parents. P. Mazet (2004, p. 308) stresses “the need for the child and his or her parents to have an open project where hope is present, not in denial of the disease, but in a gradual adaptation to reality”. The parents must neither feel alone in a dead-end, nor in a frozen situation with no possible outcome.

Announcement of the disability outside the perinatal period

13The last two decades have been marked by huge progress in our understanding of the aetiology of many disabilities. The discovery of new genes responsible for deficiencies of hitherto unknown origin primarily involves the family as a whole. Indeed, learning that your child’s disease is of genetic origin hits the entire family constellation with full force: spouses, parents, children, brothers and sisters, grandparents will, each in their own way, be transfixed by that announcement that brings into action representations concerning the family line and its destiny. However the announcement is made (it can be brutally blunt or simply confirm doubts that have emerged over time), the vision the family had of itself, of its past, of its present and above all of its future is likely to be transformed.

14When the genetic origin of a disability is identified, its discovery can have the effect, within the family, of a “family atom bomb” (Gargiulo et al., 2006). Thus, as a father consults to see why his 9-year old son is lagging far behind educationally, he learns that his child is affected by Steinert’s disease handed down by his wife, herself an unwitting carrier of the genetic anomaly. He also discovers that his elder son, aged 16, has a 50% chance of carrying the gene and that he can, without yet showing visible signs of the disease, suffer from serious heart complaints that will have to be monitored.

15In such a context, each of the members of the family is led to speculate as to their wish to know if they are carriers or not, as also the need to talk of the family risk with the ascendants, collateral relatives and descendants. The threat of a disease to come can lead to representations of future losses, inducing a kind of ‘melancholisation’, as if loss of the future was already an absolute and undisputed fact, not just for oneself, but also for the other members of the family.

Phantasms of guilt

16In the case of hereditary genetic diseases, the whole family can feel as if they carried and passed on a sort of curse onto the lineage, with the parents feeling guilty of having handed down the “bad gene” to one of their children, who may in turn feel guilty of being able to hand it down to their descendants. Such an announcement is thus characterised by the encounter with the question of guilt and with that of injustice.

17Such new knowledge can be at the origin of dread, confusion and doubts and lead on, by its traumatic power, to the emergence of phantasms of guilt in the parents that will re-emerge with the announcement of the genetic dimension of the pathology. A. Ciccone (2001) states that the phantasms of guilt are imaginary scenarios reconstructed after the event in which the parents assign to themselves responsibility for their child’s disease. According to the same author, these phantasms have a dual function. The first is to attenuate the traumatic impact by switching from the status of a passive individual who merely suffers to that of the active individual who creates and makes things happen. The second is to allow a movement of appropriation where the person becomes the subject of a story that imposes itself on them. The phantasms of guilt do not take into account the reality of the transmission but feed off other past psychic events that are insufficiently elaborated by an after the fact effect.

18There is the case of a mother whose son is afflicted by Duchenne muscular dystrophy, an X-linked recessive disease [1]. When she discovers her position in passing on the disease, she wonders: “How could I have passed on this disease to my child? What mother can give death to her son when she should be giving life?” The psychological interviews offered in a hospital setting enabled her to express her “theory” on the causes of her child’s disease. She thought she was at the origin of her son’s disease not because she handed it down to him genetically but because, during her pregnancy, she had had a row with her mother – the words expressed during that argument, she maintained, pierced her belly to speak directly to the unborn child. She concluded that she had harmed her child and, whatever the doctor told her, persisted in believing that the disease would not have arisen if the row had not occurred. Thus, the enunciation of a medically established cause does not prevent parents from devising irrational explanations for the illness, so finding a way to link the event to their history.

19Telling parents: “You’re not to blame”, “You didn’t choose to pass on the gene to your child” is to no purpose. A. Ciccone insists on the fact that the person has to accede, “by themselves”, to a position of innocence: others cannot exonerate a person in their own eyes. It is appropriate to respect the time framework of the person’s thought processes without seeking to contradict. Only the elaboration of guilt can guarantee the necessary psychic work. That personal work may herald in a period of depression, after which it can be overcome.

20The announcement of the genetic nature of the pathology may bring to mind another past event having remained more or less “dormant” with an after the fact effect. The arrow of time becomes reversed, now going from present into the past, giving the latter new meanings. Thus, the announcement of a loss to come as materialised by the revelation of the diagnosis can revive past losses. In this context, a form of “informative illusion” may sometimes be seen among practitioners who believe they can give purely scientific information without taking into consideration the subject’s mental reality. Such information would then be seen as being capable of exonerating the parent merely by rational explanation, whereas any genetic disorder throws back both to the heritage of biological transmission and to a set of representations a subject may entertain as to the transgenerational history in which they find themselves involved.

The child and siblings: what he or she must be able to say, what we should hear

21The traumatism suffered by the siblings has multiple sources: changes to the parents’ attention to and way of looking at them, confrontation with a form of vulnerability and a fragility of one of the siblings on announcement of the disability, a feeling of powerlessness and the impression of suddenly losing the support and solicitude of adults, awkwardness in managing the ambivalence of brotherly or sisterly feelings, as with jealousy and rivalry versus complicity (Scelles, 1998 and 2010). The brothers and sisters sometimes feel personally involved in the parents’ sadness and in the child’s pathology, which generates in them a sense of guilt (Missonnier et al., 2012). Children not affected by the disease also need to give meaning to the event of which they are the immediate witnesses. It is not so rare for them to also see themselves as victims as they share in the suffering of the family as a whole. In that sense, the encounter with the trauma cannot be reduced to the single member of the sibling group affected by the disease. While for the parents the feeling of guilt can be a way to renew their bonds with the sick child, the same may apply for the brother or sister free from the disease, sometimes forced unconsciously to appropriate for themselves, as for the others, what happens so as not to condemn themselves to exile within their family.

22In that perspective, guilt appears to be the means both to egress from the scandal of injustice and the absurd and maintain a sense of belonging among the siblings. In this work of appropriation, it may prove necessary to take sides as either bearing the disease or not, sick or healthy, carrier or not carrier. These polarities seem to play on the mode of a destiny marked by the seal of binarity (Frischmann, 2003). A crack in the image of a sibling community founded on the myth of a shared heredity will then emerge and the sibling bond will be marked by an unbinding effect. This is a break in the sense that the sick brother or sister retains a likeness (semblable) yet becomes quite another person.

23Between brothers and sisters, there is customarily an obvious handed down given that is not questioned, that of the indissoluble biological link of the blood bond. Where genetic disease arises, a demystification and disillusion occur through the recognition that the other can have another destiny than one’s own. That disillusion fits in fundamentally with the tragedy of a dissymmetry. The child may feel possessed by a feeling of shame and guilt, both by identification with the shame and guilt of their parents and their own guilt and shame of not being a “good brother/sister”, a “good son/daughter” and not adequately supporting their parents.

The aetiological quest as to the origin of the disease

25According to G. Rimbault and P. Royer (1967), whether the disease be rejected or accepted, it triggers in the child an aetiological quest. For these authors, the aetiological quest designates questioning through the phantasmatic filter specific to the child. It has the aim of discovering and naming what is at the origin of the bodily lack. Everything happens as if the identification and registering of the real disability, by a phantasmatic search for an origin or a guilty party, endowed the subject with the phantasm of control over the non-sense that is the disease.

26Clinical experience with sick children and those with disabilities reveals that the disability undeniably introduces a new reality with which the child has to come to terms. Each child takes an interest in their problem in a singular manner, variable over time, with phases of investment/disinvestment of the disability and its objects (care, technical assistance and rehabilitation), with concerns relating to its evolution (orthopaedic operations or devices), periods of denial, divides, cancellation… To each period and for each child, the disease and the disability will occupy a more or less preeminent position in their evolving psychological conflict, according to the period in life the disease appears, the periods in life the child goes through with it, their position in the Oedipal problematic, sibling rivalry and the family dynamic past and present. Sometimes, the child’s concerns will above all be focused on the limits the disability imposes on them, at other moments fear of death will come to the fore of the psychic scene. In other children, the preoccupation will relate more to how others see them, with the feeling of shame and guilt in relation to the narcissistic wound the child suffers from in confronting their body, their visible limits and patent physical deformities. Indeed, the disability affects the child at the heart of what is to be seen and is shown to others, with the procession of concerns relating to their “being different to others” and the possibility of registering that difference in identity building.

27For the child, the absence of words often augments the tragic effect of the situation. It is precisely to help the child put into words what they feel and to understand how they orient their quest for knowledge that, at certain times during the psychological interview in the hospital setting, we suggest the “three-card game” allowing them to use a game situation to express their concerns (Gargiulo et al., 2009). We simply ask them: “Do you want to play the three card game” and tell them how it works.

28With the “questions with an answer” card, the child asks a question and waits for an answer. We respond with three comments: a) many questions don’t find answers; b) I don’t always know the answer; c) playing at questions and answers may take time as, in some cases, the answer is not a one-off.

29With the “questions without an answer” card the child asks a question to which they do not expect a precise or immediate response; it is the desire to ask the question that prevails.

30With the “fears and nightmares” card, the child has the opportunity to talk about the fears and nightmares that haunt them.

31In our clinical experience, this game demonstrated a heuristic and cathartic value relating not only to the experience of the disease and the disability, but also the concerns of the child with respect to their life with their parents, brothers and sisters, and school.

32What always remains surprising is their interest for the “questions without an answer”, for which they do not seek an immediate or verbal response, but simply feel what that question will arouse in the other. As a general rule, in hospital practice, when the child asks a major question relating to them, it is often very much more with the aim of not feeling alone before their questioning than to simply obtain a concrete and closed answer to what bothers them. It sometimes also arises that children put medical questions to the social worker, or a care assistant when they are serving lunch as with “What’s my illness called?”, precisely because they know perfectly well that the social worker (or care assistant) cannot answer from a medical point of view and will instead react emotionally. If the physician then comes along to talk with the kid, the latter will say they have no question to ask and that all’s well.

33One major element that indicates the way the child lives with their disease and evolving disability is the special relation they maintain with the idea of hoping to be cured. This aspect is as important as aetiological explanatory theories. “Is this going to stop?”, “Will I be cured”, “Will a treatment one day allow me to walk normally, run, will I be like the others?” Facing these questions demands of the therapist not just tact and great respect for the inquiries the child formulates, but also perfect awareness that an answer is not always expected.

Role of family interviews

34Family interviews can foster thinking together as a family, which is so important to restore the family psychic envelope mentioned at the beginning of the article. This involves creating a setting where children can express themselves in the family without having to fear hurting their parents, brothers and sisters. Thus, each child can take part actively in constructing the family and individual narrativity process about the pathology. During consultations, it is not unusual for a child to start talking and help their parent express what they feel; in return, the child feels authorised and legitimised to continue. All this opens out to create a bridge of reassurance between the world of the adults and that of the children.

35Psychological interviews also provide an opportunity to remind children that “thinking about doing harm” is not the same thing as “doing harm”, “pretending to say” is not the same as “doing for real” (Winnicott, 1971). The outline of thought that ensues is not taken for reality and an imaginative haziness is privileged, allowing the phantasm to keep its status as a veil or a screen. It is then appropriate to ensure, firstly, that the child receives attention in their emotions and questionings and, secondly, that the disabled child does not become, either for their siblings or for professionals, an object of care or observation.