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« Is deafness subject to analysis, objective examination, scholarly discourse, scientific discourse or is it only apprehensible in the form of theatre, storytelling or experience?… Perhaps this is also one of the reasons why it is so difficult to talk about deafness and why one rushes so quickly to find ways to overcome it. »

Bernard Mottez, 1994, « L’expérience de la surdité », an appendix document for the CEMS internal seminar of February 3, 1994, unpublished.

This site contains articles, presentations and documents that I have been able to present since 1981 on deafness and deafblindness and that retrace my journey between activist life and professional life alongside the Deaf community. I thought I would publish these documents because they seemed to me to provide some guidance on the evolution of the way of life of Deaf and Deafblind people and the relationship between Deaf and hearing people since the last quarter of the 20th century. Through this contribution, I hope I have not deviated from the spirit of Bernard Mottez’s remark, which sums up his approach to the issue so well and which I have always wanted to make my own: giving primacy to the relationship rather than to the thing.

Alexis Karacostas

Interview by Surdinord, 1995

Surdinord: Who are you, Dr. Alexis Karacostas?

I was born in Paris, I am 43 years old, I am French and Greek, I am a hearing person, I work as a psychiatrist as a part-time hospital practitioner at the psychiatric hospital of Antony, in the Hauts-de-Seine district. I am also working in a private practice in the 13th arrondissement of Paris and I participate once a week in the activities of CEBES (Centre d’Éducation Bilingue précoce pour Enfants Sourds), place de la République in Paris. Finally, for almost two years, I have been president of the association GESTES (Groupe d’Études Spécialisé « Thérapies et Surdités »).

Surdinord: What was your training?

AK: A completely classical training: after my medical studies, I specialized in psychiatry and got the position of resident doctor of the psychiatric hospitals, to arrive at the current situation where I divide my time between a private activity and the public service, two different forms of exercise but all in all quite complementary. What is less traditional and which marked my studies in medicine and psychiatry, is that I started them just after May 1968, at a time when the challenge of psychiatry was the main theme of social mobilization: the defense of patients’ rights, the fight against the sad asylar reality, the development of care outside the hospital walls were discussed daily in hospitals, in the media, in demonstrations and conferences, in the theatres, in the cinemas or in books. The philosopher Michel Foucault and the Italian movement initiated by Franco Basaglia and his team, to name but a few, had made a major contribution to making mental health an issue of social protest and transformation. It took me a long and painful reflection, I had to look for my marks for a long time, before deciding to engage in psychiatry without falling into « cop-iatry » as it was denounced at the time… It was an exciting movement that confronted me from the outset with the issues of deviance, marginality and exclusion.

Surdinord: What led you to become interested in the problems of Deaf people in psychiatry?

AK: Things were done in several stages. At first, the history of psychiatry enthusiast that I was (for the reasons I have just explained) had to write a medical thesis, and pure chance made me choose to trace the extraordinary history of the first ten years of the Institut national de jeunes sourds de Paris at the time of the French Revolution. I was thus led to discover the immense richness of the historical and artistic heritage of this institute. Shortly after defending my thesis, in 1982 I was hired at the same institute to work on the preservation and enhancement of archives… a very part-time activity (one day a week), but one that kept my mind moving by giving me the opportunity to do something other than care. The bicentenary of the French Revolution was already looming and I began to gradually move from the classification of dusty waste paper to the frequentation of living beings, Deaf persons in this case, with their way of life, their language, their associations, the joys and sorrows of their present situation. And so I came up with the idea of taking advantage of the bicentenary of the French Revolution to promote not only the history of the Institut national de jeunes sourds de Paris, but also that of the entire Deaf community. An adventure that lasted three and a half years, and which resulted in a fireworks display: the exhibition « Le Pouvoir des Signes » held at the Chapelle de la Sorbonne in Paris in December 1989 and January 1990, and the publication of the corresponding catalogue, the result of the fierce and enthusiastic collaboration of an ever-growing team of Deaf and hearing people. Meanwhile, I learned that the association « GESTES » was being created…

Surdinord: Why did you create the association « GESTES » and what are its aims?

AK: I am not a founding member of the association « GESTES », I was too busy, at the time of its creation, preparing the exhibition. But in the spring of 1990, I joined the members of the Board of Directors to start working with them. I have thus brought together two axes, initially separate from my professional activity. The association « GESTES » was born out of a general lack of knowledge of Deaf people’ psychological suffering and the cruel lack of psychiatric care adapted to them. Mental health professionals were moved by this and decided to react. They then formulated some fundamental principles, an ethic of the action of any professional in the field of deafness: Deaf people must be considered as subjects in their own right; hearing people, however learned they may be, cannot speak on their behalf or in their place; to be appropriate, the diagnostic approach and care intervention cannot ignore the fact that there is a Deaf community using a language, sign language: visual-gestural communication and the way of life of Deaf people are thus essential data for any serious consideration of the psychological suffering of Deaf people. Finally, if deafness and psychological suffering are not, by nature, assimilable to each other (the Deaf person is not a patient simply because he or she is deaf, but he or she may present psychological suffering), then there is nothing to prevent (and even everything should contribute) Deaf people from having access to the professional status of carers and from collaborating, on an equal basis with their hearing partners, in mental health care.

Surdinord: What are the actions carried out by the association « GESTES »?

AK: For the past five years, GESTES has been organizing monthly conferences for all audiences on the theme of mental health and deafness. These conferences are recorded on video cassettes and can be rented as working documents by members. The association also organized a study day in 1989 and a training for Deaf professionals (with teaching and practical internships in institutions). It publishes a free quarterly newsletter, but for the time being reserved for members, with original articles and information. It has also started publishing conferences (the first volume was published in December 1994, two more volumes are expected to follow this year). It supports research by working groups of mental health professionals, and was very active in the cochlear implant focus group led by Dr. Jean Dagron, and co-signed the referral to the National Ethics Committee in 1994. Finally, since its creation, the association has been affiliated with the European Society for Mental Health and Deafness (ESMHD), which promotes and supports the initiatives of professionals from all European countries. This Society entrusted GESTES with the task of organizing its third international congress, which therefore took place in Paris last December at UNESCO, and which was a great success: more than three hundred participants from twenty-three countries, including some fifty Deaf professionals, rich and varied communications, and, finally, the intervention of a representative of the Ministry of Health who recognized that discussions should begin for the development of care institutions adapted to Deaf people. A task we have already begun to tackle….

Surdinord: Are the leaders of « GESTES » Deaf and Hard of Hearing?

AK: Created seven years ago, « GESTES » is mainly an association of hearing people. This reflects a sociological and historical situation. But it must also be said that there are Deaf professionals among the founding members, that today two Deaf people are members of the Board (which has six members), and that, in their daily actions as well as in their general orientations, the members of « GESTES » consider it inconceivable that Deaf people do not have their place in the association. We therefore believe that the increasingly effective participation of Deaf professionals in the various activities of « GESTES » will demonstrate that we are not only adhering to the principles….

Surdinord: What is the type of Deaf adults interventions? What is their training?

AK: We have always taken care in our work to distinguish the situation of the profoundly Deaf from birth, speaker of Sign Language, from that of the deafened or hard of hearing speaking orally. We believe that these two worlds should not be confused, but we do everything we can to ensure that they accept each other and agree to discuss between them, at least within the framework of the association (during conferences, for example).

We are also aware of the sociological reality of today’s Deaf people: Deaf signers are too often not yet truly bilingual and very rarely have a degree. On the other hand, those who have become deaf or hard of hearing, whose access to French is easier, more often have degrees, but their knowledge of Sign Language and their Deaf identity are poorly ensured. When Deaf professionals join mental health teams, these realities must always be taken into account and not confused. Deaf professionals are increasingly involved in caregiving activities, it is a fact, even though too many mental health teams are still paying little attention to integrating them. Once hired, they can only benefit from on-the-job training or various continuing education sessions. The most « caring » of them (in relation to the diplomas obtained) are medical-psychological assistants (A.M.P.), whose arrival on the labour market is recent. Most often, they are Sign Language teachers, communication technicians, educators, which does not allow them to be fully recognized, either in terms of caregiver status or salaries. This does not prevent them, on the spot, from acquiring knowledge and know-how that can sometimes be formidable….

Surdinord: Dr. Karacostas, the Centre social formation et culture des sourds (CSFCS) is about to sign an agreement with the psychiatric hospital of Armentières: requests from professionals have increased in recent times. They request communication assistance. We have already responded by setting up regular and adapted actions: reception at the CSFCS of Deaf adults in psychological distress for contacts with other Deaf people, summary meetings for concerted action with professionals of the psychiatric hospital and inpatient Deaf people, support for access to autonomy… We want to formalize this service and make it optimal. To this end, one of the CSFCS officers, Ms. Morès, participated in the Congress you organized in Paris last December. With the association « GESTES », are you ready to help us?

AK: I am very happy to hear what you have just said and I am very sincerely interested to come and meet you to inform myself on the spot about your activities. A priori, your actions and our objectives seem to be in the same direction, which is why it seems to me to be of the utmost importance that GESTES comes to you for information and supports your efforts, if you obviously so wish, in any way that we can together consider useful. The services you provide seem to me to be the same ones that should be promoted throughout France, because they close the gap between professionals in the strict sense of the word and users. Such initiatives are clearly promising for the future and hearing professionals, in their practice with hearing patients, would do well to draw inspiration from them… The existence of such services leads me to believe that it would be essential for us to set up, for the whole of France, a directory of professionals and institutions capable of providing valid care for Deaf people in psychological distress. We receive almost daily requests from all regions at the association’s office, which remain unanswered due to a lack of information or a lack of locally based practitioners. For those who would like to take advantage of it, GESTES is the very type of tool that is appropriate for this function of exchange, information, networking of professionals and possibly as an intermediary between them and the public authorities.

Surdinord thanks Dr. Alexis Karacostas for his kind reply to this interview

(Interview conducted by Christian Decaillon in 1994 and published in Surdinord, publication of the Centre Social Formation et Culture des Sourds, 104 rue de Solférino, 59800 Lille, number 13, April 1995)