Mental Health Services for People Who are Deaf and Hard of Hearing in Europe

Keynote Address by Dr Alexis Karacostas

The Honourable Minister of Culture and Francophone Affairs, the President of Reach Canada, the Chair of the Conference Planning Committee, Ladies, Gentlemen, dear Colleagues and Friends,

It is a great honour for me to be here with you as a guest of the organizing committee and Mr. René Rivard to whom I express my deepest appreciation. René Rivard and I have known each other for a number of years. Through our common involvement in the field of mental health and deafness, a solid friendship has developed. René's contributions have always been extremely varied and helpful. At the international level, he has been participating for a long time in the work of the European Society for Mental Health and Deafness. He put together a valuable database of bibliographical data, which he opened to researchers around the world. He writes valued articles in journals such as the French-language "Surdités". He makes numerous contributions in conferences and symposia. Although I know less about his involvement in the Canadian situation, I know the major role he has played in the preparation of this First Canadian Conference on Mental Health and Deafness. That is to say that he is a dedicated worker who has always aimed at building bridges between cultures. René, from the bottom of my heart, this is a renewed expression of my gratitude.

And, if I have accepted this invitation, it is precisely in that same spirit, to contribute also, as he has done, as you are all are doing, to exchanges that continuously shape a new world. I am moved and I am also somewhat intimidated to open this conference with such a rich and promising program. At a very personal level, as a French mental health practitioner, I came with the intention of learning more about your practices, of widening my mental horizon, and I also wish to learn a little, at long last, about this beautiful country of yours on whose soil I have just set foot on for the first time. But my deep self-interest could not make me forget that I have come here to your meeting over and above all, on behalf of the European Society for Mental Health and Deafness (ESMHD), which I represent here. I have thus the greatest honour to forward to the organizing committee of this conference and to all the participants present the warm greeting of the Board and the Executive Committee of the ESMHD, as well as their wishes of support to all those who work to promote the development, in all its forms, of health and mental health care adapted to the needs of the deaf population. The ESMHD always has and always will be present besides those who fight against all forms of discrimination, for the recognition of the fundamental rights of deaf citizens, in matters of health as well as in other areas.

Over the last twenty years, considerable work has been undertaken in many countries. The members of numerous deaf communities and health professionals have joined together, and with many other stakeholders in society, to initiate new institutional practices. Inevitably and, I should add, fortunately, this move has resulted in the development of an ethical debate which today is on both the basis of new professional practices and of the ethics of these actions, that we will reflect upon during this conference. Ethics must guide each of our steps, but they also evolve in that forward movement; as whole, they do not necessarily precede the way one is taking. I will therefore try to present at the same time the practices and the broad outline of the ethical debate at the crossroads of deafness, health and mental health.

Overall, one may say that institutional practices and ideologies revolve around two trends. The first focuses on the concept of a sensory deficit (auditory and/or visual) and, therefore, emphasizes the lack, on the deficit that should be corrected. Conversely, the second trend stresses the relativity of the sensory deficit compared to the other existing senses and seeks original, individual, and social overall strategies that the deaf or the deaf-blind are able to implement provided that they live in an enabling environment.

Those who favour the former trend see deafness as an absolute illness that must be fought by either prevention, or redress. Deafness prevention happens on many levels, such as pregnancy monitoring, neonatal screening and genetic assessment. Redress technologies include interventions in the fields of medicine, surgery, audiology, and speech therapy. Since it is focussed on the disabled organ, redress has as its basic challenge auditory recovery and, as a result, appeals to oral expression in human interaction. From this perspective, the objective is (asymptomatically, from both the audiological perspective and that of social identity) that the deaf individual becomes hearing. From the beginning, deafness is rejected. The redressing perspective mobilizes the Deaf, the professionals, the teachers and the parents in an effort to ensure that the deaf individual become functionally hearing.

From the second perspective, deafness is perceived as an irreversible state that occasions a “situation”. Deafness being, we should accept it and deal with it. The interest of those who claim they share this objective will concentrate on the potential effects provided by the ecosystem, that is, on the interaction between one or more deaf, deaf-blind and hard of hearing persons and their environment. Here deafness and deaf-blindness are defined as the relationship that is built between the deaf or deaf-blind person and others, including individuals, institutions or societies. At this point, it seems relevant to remind ourselves of a basic concept. As with any disability, the sensory disability may be defined as the number of sites and social functions from which person is excluded on account of their disability. Therefore, the solution is not the disappearance of deafness and deaf-blindness, and, thereby, of the Deaf and the Deaf-blind, but rather by the right of the Deaf and the Deaf-blind to fully exist and be recognized. The fight against exclusion means that it is the relational framework, or what I call the ecosystem, that should be changed, and the primary effort should then be to ensure that a site or a function is accessible. Over some twenty years, and thanks to a massive mobilization of the deaf communities and of stakeholders of civil societies, numerous private, public or institutional sites were made accessible. Legislation has been passed to allow access to the true exercise of their citizenship which has been denied by previous ecosystems. An increasing number of countries have recognized the existence of national sign languages and the right of the Deaf to use them if they so choose. We must be pleased with this evolution because there is now an emerging awareness of deafness and that many deaf persons require some form of visual-gestural communication, and that Sign Language, which they can chose to learn if they so desire, is nevertheless a language that can provide countless services and a general wellness in their social relationships. I personally consider that sign languages constitute an inalienable heritage of humanity. They are languages that hearing people would do well to learn, not to extinguish their thirst for philanthropy, but to enrich their culture and for their own pleasure. The European Society for Mental Health and Deafness has always advocated, and that is clearly outlined in its enactment, that the Deaf must, as all human beings, be able to be cared for in the language of their choice and thus that their fundamental rights be respected.

I would like to draw your attention to an important fact and a source of confusion. The determination of principles of action is, now more than ever, a correct resolution to contradictions. I maintain that it is essential to properly differentiate between techniques, i.e. the redress techniques I mentioned above, and the ideological contexts within which they reside. One example will suffice. Oral education of deaf children is a technique: it aims at ensuring the best possible elocution in the children. It involves specific means that have been the subject of many evaluations; throughout its history some of its means have been deemed useless and abandoned, other were developed. So it has been the subject of a progressive accumulation of knowledge. Another example: hearing aids. They have been in existence for centuries and have constantly been improved. Nowadays, no one questions their value and their usefulness as a technological tool, provided the indications are carefully followed. A final example: cochlear implants. That is a more recent technology, to be sure, much more sophisticated and audacious than hearing aids, which entail risks, resulting in success or failure, but their rapid evolution also tells of their performance improvements.

The context in which these techniques are used represents quite another ideological scope. To have a deaf child speak can never be considered as an objective independent of the parents' general educational choices, their ideological orientations and their conception of the world. That goal will be primary or not based on parental desire to eliminate the deafness, drawing on all the concrete consequences of its existence, which are considered definitive and final, by fighting for accessibility. On the other hand, fighting for accessibility may have a different meaning for different people. Some deaf people may argue for bilingualism (sign language - written language), others (as it is frequently the case, with persons who are audiologically characterized as deafened or hard of hearing) will choose for a strict unilingualism (towards their country's oral and written language) and would rather adopt technical aids (captioning, lip reading, etc.). Whatever the case, the fight for accessibility requires ipso facto that deafness be recognized as an existing fact and that it constitutes a given reality which can provide the opportunity for potential concrete actions.

In the history of deafness, there have been long periods of obscurantism when the ideology of oral education may have superceded all other objectives, except that of allowing deaf children to express themselves orally. In 1880, at the Milan Conference, when educators and ministries united their voices to impose articulate speech, they also totally banned sign language from education and expelled deaf teachers. In so doing, they plunged the Deaf into misery. In France, for example, this lasted for almost a century, since the decision was reversed only in 1976. Similarly in the United States, in 1883, when Graham Bell proposed to the National Science Academy, in an eugenist perspective, to prohibit sign language, to suppress specialized schools, to prohibit the deaf press, and to close associations of the Deaf in order to prevent a deaf variety of the human race to be formed. He was building the ideological foundations of a eugenicist policy that found its ultimate outcome with the accession of Hitler and the extermination of the Deaf in camps. Therefore, it is appropriate to make a clear distinction between oral education as a pedagogical technique and oralism, an ideological trend negating the value and existence of sign language, in fact, any right to exist as a deaf individual. However, the application of oral education is not automatically paired with the oralist ideology, far from it. As well, wearing hearing aids does not automatically imply that the deaf person abandons or ignores sign language. Finally, the use of a cochlear implant does not mean that the Deaf be denied their right to visual-gestual communication. In France, unfortunately, and contrary to what happens in Sweden, the promotion of cochlear implants involves an atmosphere of true hostility towards sign language. Far from being only a technique, it spearheads a new oralist crusade of the medical “knights” of modern times. And, in our perspective, that is what must be condemned: not oral education, not the device, not the implant, but the refusal to recognize the Deaf and their loved ones the right to choose between various options for their lives, education, culture and the exercise of their citizenship. It is a refusal to implement material, human and institutional means to allow the Deaf to exercise of that right (for instance, the right to access to sign language - written language bilingualism). The danger is to substitute the uniformity of thought and behaviour for the universality of their rights. Thus, perceiving the cochlear implant as the answer to all questions and arguing that attempts to promote sign languages and accessibility are useless is a dangerous and damaging policy. This connotes a single way to perceive life, as justified as it may be, overrides all others and may bar entire communities of human beings from building their lives on other bases, according to other standards.

In other words, the basic criteria that should guide us, as a last resort, is that of a social development that acknowledges the Deaf their right to choose their cultural allegiance and avail themselves of an identity and social status - both the one that they wish to provide for themselves and the one that the hearing recognize for them. The basic criterion cannot be the audio-phonological status of the deaf person. Not that this criterion has no value: it is not inconsequent for a deaf individual to be severely deaf or profoundly deaf, deaf at birth or deafened, seeing deaf or deaf-blind! But the individual should always be allowed to evaluate their individual skills and to express their own wishes, for instance, whether he wants and can wear a hearing aid, whether he wants and can express himself orally, whether he will follow the initial pedagogical choices and cultural orientation of his parents - oralist or in favour of bilingualism -, whether he will establish social relationships that include relations with the Deaf, and eventually marriage, or exclude them, whether he will participate, and how, in the social activities of the Deaf and in their fight to have their rights recognized, etc. What is of importance is the deaf individual’s way of integrating this data into a culture, not their level of hearing. In the final analysis, it is the means offered and provided by the ecosystem that will determine the optimal level of wellness. Refusing the ideology (I repeat: the ideology, not the technique) reduces the Deaf to disabled ears, by fighting for the establishment of citizen relationships, it is up to the whole social body to mobilize around the issue that the right of the Deaf do exist. Each one may then play a role in the reduction of the handicap - you heard me well - I say handicap, which is a relationship, rather than an infirmity, which concerns an organ.

The history of the Deaf is none other than the history of their visibility, a highly variable characteristic depending on the countries and the times. Since the 18th century, this visibility has gone through successive stages of expansion and regression with a clearly renewed intensity in the second half of the 20th century. For a few decades, the Deaf are affirming themselves. Their individual and collective presence is becoming common and, at the same time, the level of information of the hearing population about deafness is sensibly increasing. The Deaf are no longer perceived as strange, rare and fascinating beings, who, one still wonders whether they are part of the human race. Ignorance and misunderstanding have surrendered in face of a daily presence of manifestations. The Deaf, the Deaf-blind are now part of our social environment and our mental landscape, to the point that their presence becomes irrelevant. I dream of the day when no one will feel afraid or powerless when encountering a deaf person. I dream of the disappearance of “deafophobia”, as a Dutch health professional identified it at the Manchester conference of the ESMHD, in 1997: “deafophobia”, i.e. the fear and rejection of deafness and deaf individuals, which is in fact intolerance. As we become more comfortable with this, we will learn to see a situation where the social norm will no longer be only hearing. But this comfort has one condition, that of the permanent maintenance of visibility. And visibility comes at a price: it is the daily struggle for accessibility. Our duty, as citizens and as professional, is to make all the sites from which the Deaf are excluded accessible to them. WE must endeavour to do everything possible so that bridges and exchanges are created between the Deaf and the Hearing. And these actions require changing the legislation, institutional operations and mentalities. For instance, we will need to recognize the enormous benefit for all of us, both deaf and hearing, of the provision of oral - sign language interpreters to facilitate the accessibility of all public places, teaching institutions, audio-visual, care facilities, etc. We will no longer fear contacts of the Deaf among themselves, in the classroom, in recreation or at work; no longer see danger in marriages between deaf individuals, or in the collective education of the deaf in "annexed" classes (i.e. classes of deaf students integrated into "regular", hearing schools). Finally, we will need to recognize that this collective dimension of the social life of the Deaf is basic to their social integration into the hearing society and not a factor per se of "ghettoisation" or "communitarism".

Let us not entertain sweet illusions: the visibility of the Deaf is not and will never be an irreversible acquisition; it faces oblivion, refusal, uniformity, ready-made thinking on a daily basis and this is an endless struggle between the two trends. We must therefore not wait for the Deaf to become hearing before we provide them with accessible medical and surgical care, psychotherapy, justice, school, televised information, museums, theatres, the driving permit, airline travels, etc. The idea is rather to work relentlessly in favour of a society that is open to numerous life standards, in which everyone finds their place whatever their audiological status. The professionals in each of these areas have a great role to play. And we very naturally get to this issue of the new health practices, which I will now outline, quite schematically to be true but hoping that these reflections provide us with debate material at this conference.

For two decades, sometimes more depending on the country, mental health and physical health practitioners have initiated throughout the world a struggle for the creation of health services adapted to the needs of the Deaf. Why? Because those practitioners were numerous, and they are more and more numerous where those services are still anticipated, to observe the poor quality of care provided to the deaf population: misdiagnoses, linguistic and cultural misunderstandings causing treatment errors, absence of any psychotherapeutic treatment resulting in inappropriate lengthening of hospitalization and, sometimes, the deaf patient being forgotten on a ward for twenty or thirty years, ignorance of the rights of the hospitalized patient, lack of patient information and consent in receiving care, breach of confidentiality, patient isolation in generating suffering, anxiety, depression and impoverished self-image, absence of prevention policies resulting in health catastrophes (aids could wreak havoc among the deaf population and the persons in contact with it before the first real information campaigns and the first treatments could be initiated). Those practitioners reached the same conclusions: services must be implemented where the Deaf intake takes place not according to the standards imposed arbitrarily but according to the way of life of the Deaf. And this requires going to the deaf population, studying its needs and sharing practices and values, which are dear to this population.

In concrete terms, this has meant that all care and social services must be instructed to learn and use sign language: hearing caregivers, doctors, nurses, health care aides, psychiatrists and social assistants needed to learn that language and teams should hire sign - oral language interpreters. Training sessions need be implemented. This in no way means that the Deaf are relegated to using only sign language if they do not wish to: I have said it earlier, it is their right to use sign language and, personally, I refrain from any sign when I see a patient who ignores or refuses them. But the possibility is now provided for them to be treated in the language of their choice. Hundreds of care units were thus created throughout the world. I strongly recommend that you read the impressive document developed by our British colleagues "Signs of the Time" which, if adopted by the Health authorities of Great Britain, will provide a kind of charter of good practices and a guideline for future development, at the national level, of mental health services for the Deaf. This document has beyond any doubt great value for health professionals of other countries, even practising in different conditions. In the Netherlands, five care centres were opened, geographically well distributed, providing hospitalization, counselling and home care. My colleague Otto Fritschy will thus be able to describe to you the wonderful work of his team and himself towards elderly deaf individuals, in Ede, Netherlands, not far from the place where an equally wonderful retirement house for the Deaf, the like of which does not exist anywhere else in the world, that is as much a source of well being for the elderly Deaf (at least as far as I know). In France, twelve regional hospital centres were created since 1996, subsidized by the government. These centres still operate to various degrees, but they establish a better and more organized network of care on the whole. I could keep going with examples, but I would not like to leave you with the impression that these developments are as advanced in all countries. Everything is far from being rosy: for instance, it widens gaps that can be seen between Europe's Northern and Southern countries, the latter being clearly providing less in care services for the Deaf.

Another essential element of the development of adapted care was the hiring of Deaf professionals in teams. The term "professional" covers all kinds of skills. It is used above all when deaf individuals participate, very often without diplomas, in the daily work of teams, as experts in the deaf condition which is still not provided in the academic training of their hearing colleagues is still missing. In every situation where this deaf-hearing co-operation is implemented, the teams enter into the deaf culture and their way of life, greater reciprocity emerges between hearing and deaf caregivers, and the social and professional recognition between teams, both within and without a hospital, is thereby infinitely improved. This is an excellent means to go beyond philanthropic attitudes that assign the Deaf a place of indigent individuals assisted by well-wishing hearing persons. Hearing and deaf professionals work side by side, share their experiences and discover each other by bridging the gaps between their cultures on a daily basis. They reflect together on improvements to bring to their practice, produce videocassettes for sign language information campaign on health themes. In brief, they deploy their activities in all areas. And, here, I think of the pioneering work led by deaf professionals such as Barbara Brauer in the United States, to whom I wish to pay homage. Barbara was the Director of the Mental Health Center at Gallaudet University. As you may already know, she died two months ago. I also think of Sharon Ridgeway, psychologist in Manchester, England, who treats victims of sexual abuse, of Birgitta Martinell in Sweden, of Michel Girod in Paris, in charge of the program "Telling Health in French Sign Language" and of so many others that I will not name. There exist services that have no deaf professionals on staff. It is not indifferent, in their daily work, to need to express themselves from morning to evening in sign language with colleagues, at meetings, during the breaks when we tell jokes to relax. The hearing persons thus learn to better direct their sight, to respect the Deaf in taking the floor, to better observe the way to get in touch, how to touch, the various gestual qualities. The presence of deaf professionals definitely gives a very different character to the operation of a service. Generally, I think the sharing of a language only during counselling session means only a minute of entry into the deaf culture. The bridges between deaf and hearing people require much more varied contacts, both within and without the professional field.

The organization of care adapted to the deaf population and deaf-hearing co-operation set the conditions for the creation of a new work referential. This new framework provides for clinical discoveries that, otherwise, could never have happened. The hearing mental health professionals are generally trained according to certain theoretical and practical models that they have acquired at university. As they meet with a deaf patient, it will be very natural for them to use this knowledge in the same way they would in a conversation with a hearing patient, without seeking to introduce any modification. In the short term, this seems plausible. But the lack of adaptation of this method appears clearly when the conduct and the results of the care are carefully evaluated in the longer term. For instance, it will not be sufficient to introduce an interpreter into a psychotherapy session to treat a deaf patient appropriately. A practice worthy of this name requires not only an evaluation, the efforts of an interpreter being present at the session, but also a comparison of the session results where only the hearing therapist and the deaf patient are in contact, both of them using sing language, as well as those of a session involving both a deaf therapist and a deaf client.

The language barrier is both an obstacle, a source of misunderstandings, and a welcome opportunity to express one's thinking and to fathom the soundness of one's thoughts. There is nothing rewarding than submitting to the need to convey a meaning, when your knowledge of the language is insecure and awkward. The fear of mutual misunderstandings - but this is a vivid fear - hangs over all talks between deaf and hearing people. The increased vigilance required in this situation is the condition of the renewal of the clinical outlook. All mental health professionals have experienced times when they simultaneously perceive disorders of deaf patients as ordinary disorders similar to those of hearing patients, and as elements, which are specific of an original situation. These specifics must be carefully taken into consideration. The needs of the deaf population have been neglected for too long by the hearing environment to let them slip again into the limbo of indifference. Authentic clinical work does not fit well with the clinic worker’s mental laziness.

The changes I discussed with you invite us to rethink the totality of the theoretical and practical care apparatus. Theoretically, deafness professionals are generally convinced that there is no psychology of the Deaf, which is good. They admit that a typology of the Deaf is unfounded (the Deaf are like this, or like that.). But we must not be surprised to see them come back to the ideology of deafness as a disability when they are content to import traditional thinking models into this newly created framework. Instead of thinking of the hearing-deaf encounter as a bridge to build between two singularities, they will tend to extract themselves from the encounter and attribute the specifics of the talk to a single deaf patient. So I happened to hear deafness professionals say that talks with deaf patients last twice as long as those with hearing patients, as if that characteristic was an attribute per se of the Deaf. Those professionals were, obviously, hearing. It did not come into their minds to attribute the doubling of the time to the shock of cultures and of the respective ways of being of the patient as well as the caregiver, not asking what it would be like if a deaf professional was meeting a deaf patient. They would thus fall back into the traps of the objectification of the other.

The co-operation between deaf and hearing professionals within care giving teams is in no way obvious. Its implementation is always troubles by anxiety and guilt generating conflicts. If this is so, it is that the difficulty in finding a common language goes well beyond learning the oral and sign languages. Understanding each other, in the most accomplished sense of the term, implies a common adherence to objectives and, thus, to values. It also implies an agreement in non-verbal communication that linguistic performances alone do not attain. It is a frequent accusation that the Deaf direct to hearing individuals who launch into learning sign language: the hearing clumsily move their arms and hands, without amplitude, without flexibility, betraying a gestual inhibition. Through lack of habit or cultural tradition or through shyness, they restrict their gestures. Similarly, their facial features often remain motionless and inexpressive. However, in sign language, facial mimic is an essential linguistic component without which no message can be well understood by a deaf communicator. The deaf therefore frequently coach the hearing into mobilizing their facial muscles, to give volume and assurance to their gestures, in all, to lift the inhibition that bridles their ability for expression. In other words, it is a different physical engagement, a change in our rapport to the world that the Deaf call us. For a psychotherapist whose ways of curing a patient mean initiating a therapeutic symbiosis, this invitation to free one's own expression through gesture is the best asset the rapprochement needed for a good psychological intimacy.

We, deaf and hearing professionals, must therefore learn to recognize the uncertainties of our identity, to accept the anxiety, not so that it paralyses us, but because it signals unknown lands to discover. From an annoying obstacle, "deafophobia" or, more generally, the fear of the different may become a powerful means to avoid the collapse of communication. Co-operation between the Deaf and the Hearing is therefore, from this vantage point, an opportunity. Thus the opportunity given us is to move towards meeting the other, this other stranger who is nevertheless a human being and that we sometimes end up, in the best of cases, to discover within ourselves.

But culture shock is not the sole privilege of exchanges between deaf and hearing people. It is also found in international meetings. It is not always easy to understand each other between countries, languages, cultures, and the resolution of misunderstandings forces us always to remain alert during international exchanges. These multiply tremendously and the movement does not seem to slow down. Since its creation in 1986, the ESMHD has been organizing congresses every three years in a different city. Since 1998, world congresses have appeared, in Washington D.C., then in Copenhagen, in 2000. The next world congress will be held in South Africa, in October 2005. Many congresses have already been organized in Buenos Aires, where plans to lay the foundations of a Latino-American Society for Mental Health and Deafness. To these international congresses, one must add meetings of more modest dimensions, but more frequent, of the Specific Interest Groups (SIG) of the European Society for Mental Health and Deafness that hold general meetings and regularly propose symposia. Finally, one must mention the excellent work of our Italian colleague Ettore Guaia, who launched an internet-based forum of exchange between deafness and mental health professionals, the international directory of professionals’ addresses developed by our colleagues of Gallaudet University, the links that were established with the World Federation of the Deaf. Please excuse me if I do not mention everyone. That would be impossible. I only wanted to underline the recent acceleration and the intensity of the exchanges that are happening around the world in such a specific focus, that of mental health and deafness.

As you can see, the task is daunting. We are convinced that the social integration and well being of the Deaf concerns us all. It is impossible to reduce those objectives to their professional parameters. Where mental health is concerned, it is life in its totality that is on the edge. This is why the well being of all, deaf and hearing, requires a mutual recognition of existence, in all its forms. I think I have been clear enough on the importance of the bridges between cultures, and there are still so many left to be built. Ladies and Gentlemen, at the onset of this first Canadian conference to which I address all my wishes for success, I reiterate the support of the ESMHD as a whole and I am pleased that European mental health professionals join forces with Canadians, deaf and hard of hearing, to work together for a shared future.

return to top