♦ Mental Health and Deafness in a Broader Perspective:
Change From “Mental Health and Deafness”
to “Health and Deafness” in France
There is an event in the history of deaf people and of our societies that researchers continue to analyse form all possible angles. That is the distressing memory of the Milan Congress of 1880. Participants in that international congress, organized primarily by the French and Italians, most of them hearing individuals, concluded that the supposed ‘oral’ method was superior to sign language and that indeed, sign language should be abandoned permanently in schools in favour of the oral language. That congress, therefore, opened one of the darkest chapters in the history of deaf people, and gave its approval to a veritable witch-hunt. Deaf students were punished and excluded if they attempted to express themselves in sign language in schools, and the use of gestures in public became stigmatized and shameful. In addition, an immense body of cultural and social heritage was fated to a discredited death, with the disappearance of sign-language dictionaries, the destruction of museums of deaf culture, the dismissal of deaf teachers and the imposing of particularly violent methods for the “demuting” of deaf children.
Historians have analysed the conditions that enabled such a movement not only to win out but also to last (in France, for instance, sign language was prohibited in schools until 1976, that is, for almost a hundred years). They conclude that the holding of that congress and its lasting effects in all of Europe were the result of a particular set of social and historical circumstances, indeed a wide range of parameters. These circumstances involved the cumulative, convergent and synchronized impact of highly diverse economic, social and political factors. In France, for instance, I would cite in the second half of the nineteenth century, political events (such as the collapse of the Napoleonic Empire and the proclamation of a Republic, leading to laws imposing French as the only language authorized in schools and in all relations with the state administration), the rise of Eugenicist and racist ideologies concurrent with progress in genetics, the growing influence of the medical corps, the role of the Church in schools, and gradual changes in the French public administration and in relations between the public and private arenas. All these factors came together to create a lasting dogmatically and ideological orientation that ensured the supremacy of the so-called ‘oralist’ opinion and culture, which were as old as the world but had never been expressed before at such high social and political levels.
Today, however, I would like to talk to you about another set of political and social circumstances, considerably brighter in my opinion, since they are taking the opposite direction, at least in the fields involving our current Congress.
Since 1975 approximately, like deaf communities in other countries of Europe, the French deaf community has been mobilized within a movement that has continued to grow and has won major social victories. Particularly since the 1990’s, this mobilization has occurred in the direction of greater access to health-care for deaf people. Until that time, this issue was not taken into consideration by the government. Deafness was considered above all to be a handicap, requiring special education and therefore to be handled by departments of social affairs and education. There was no clear perception on the part of government that care for deaf people was part of health care in its entirety. Furthermore, since medical issues were handled by specialists, there was no collective or community dimension in the management of health-care for the deaf.
In this context, some informed professionals had already started in the 1980’s to care for deaf people in mental-health units adapted to their needs, and this in a better fashion than in the past. For its part, and in a modest manner, the GESTES association started in 1988 to bring together mental-health professionals who criticized the scandalous deficiencies in the field of mental health-care in France. Some years later this association was followed by another association named RAMSES. However, many years passed before solid and permanent relationships could be built between these professionals and the deaf community, and before real trust could be established. Indeed, even until recently, there remained an unfortunate lack of support from the government for this approach to increased health-care for deaf people.
In 1994, the GESTES association had the tremendous honour of organizing the third Congress of the ESMHD in Paris, and I recall that at the time no official representative of high rank from the Health Ministry would deign to come and speak at the Congress. But the fact that the ESMHD had conferred upon GESTES the task of organizing the congress in Paris, created the conditions for an intense mobilization around mental-health issues, and the Congress represented without doubt, a small step, but a step in the establishment of what exists today.
And yet, there lacked an essential link in the chain. The government did not seem prepared to mobilize around issues of mental health for deaf people, in other words, to consider them as public-health issues of primary importance. Unfortunately, it required the AIDS epidemic to get things moving.
The spreading of AIDS among the deaf as among the hearing population, the absence of any campaign of information and prevention adapted to deaf people, and the already strong social mobilization in the hearing population on the issue of AIDS, all contributed to creating a climate of concern. For the first time, the French administration felt the need to recognize the health of deaf people as an independent issue, requiring unique collective solutions, socially identifiable actions and adequate financial means. In other words, in France, the actual and much-awaited growth of health-care for deaf people began once the health of the general population was threatened. The health of deaf people – their general health and not just their mental health – was only then perceived as a primary issue of public health.
However, many stages were required for all resistance to break down. For instance, it was first necessary to point out that AIDS screening visits and follow-up could not be conducted properly when there was no mutual understanding between patients and theirs doctors, or when it was necessary to discuss issues of sexuality in the presence of a member of the family who acted as interpreter. Also, it was rapidly noticed that to set up specialized consultation for deaf people in the fields of AIDS prevention and care went against the rule of confidentiality, since patients would never accept to go to a place where they could be immediately spotted as being HIV-positive by other people in the waiting room. It was therefore felt necessary to extend such consultations to general-health issues, in other words, to set up an extended policy of public health. And it was in this context that the department for the Deaf was opened in the latter part of 1995 at the Salpêtrière hospital in Paris, which has cared for over 1,200 deaf patients since then. In 1995, before the opening of this department, several hundred visits of deaf patients were counted in several areas of the city. In 2000, over three thousand visits and medical procedures have been counted, and just in this particular department of the Salpêtrière.
The setting up of this department, contemporaneously with the creation of a collective awareness, had positive effects on the growth of mental health care. Until then, there existed only pioneering initiatives, of high quality but isolated and disconnected. Naturally, these could not address all the needs of deaf people. Also, the working of these departments was subject to indiscriminate budget cuts following overall cuts in the health-care sector.
In just a few years therefore, the institutional landscape has undergone profound changes.
In fact, through one of those fortunate occurrences that contribute to the kind of historical parameters I spoke of earlier, a representative of the National Assembly, Dominique Gillot, at the request of the Prime Minister, Lionel Jospin, published a report in June 1998, on the general circumstances of deaf people in France. This report contained, in conclusion, 115 proposals on how to improve the status and rights of deaf people. Among them, seven proposals involved health, and one, specifically, involved mental health. No doubt, this latter proposal was very general in its scope, stating that deaf people has a right to psychiatric care adapted to their needs. But it was still the first time, and I would ask you to keep in mind the date – 1998 – that this kind of statement was made at the highest levels of government.
Subsequently, political circumstances ensured that Mrs. Gillot become Secretary of State for Health, since her predecessor, Bernard Kouchner, was designated UN administrator to Kosovo.
Since this date, numerous decisions have helped define a path that is now irreversible. During the first World Congress on Mental Health and Deafness held in Washington in October 1998, I was able to read a message to the participants of the Congress from our Minister Martine Aubry who announced her decision to create ten regional hospitals in France. These hospitals were to provide care for deaf people in accordance with specific demands: first, that deaf professionals be employed in the health-care teams, and second, that all professionals working with deaf people, whether deaf or hearing, receive special training. These guidelines were not only maintained, they were implemented. The department of the Salpêtrière just a few weeks ago became an independent Functional Unit, with a considerable increase in resources allocated by the Ministry (six doctors, three interpreters, a social worker, a deaf nurse, a secretary, and three intern nursing-assistants). In a second stage, the cities of Grenoble and Bordeaux were designated as new hospital areas, to be followed by the cities of Lille and Strasbourg.
In addition, a program entitled “Speaking Health in French Sign Language” was created for professionals wishing to work in teams caring for deaf people. Today, there is also a training program for deaf nursing assistants (a total of six in the first graduating class) who will join teams in the hospitals mentioned above once they graduate. These training programs have become a permanent feature, to be offered every year. In fact, the number of nursing assistants currently asking to learn sign language is considerable. The Villejuif hospital, in a southern suburb of Paris, has had to turn down candidates since too high a number would have endangered the normal functioning of the hospital’s departments. Only fourteen care providers are therefore taking this course. Upon graduation, these assistants will be able to handle outpatient and hospital care in a specified department of the hospital.
The program “Speaking Health in French Sign Language” was designed through close cooperation between the Salpêtrière Hospital team, the GESTES association and three of the most well known associations in France for teaching the French Sign Language. One of these associations is now offering regular courses in sign language for deaf individuals with specific difficulties, multiple handicaps or behavioural disorders.
A network of psychiatric care is also being developed. Indeed, meetings between professionals and ministerial bodies to this effect are currently scheduled in order to create the conditions for a truly comprehensive network of care. This would involve the integration of psychiatric units that have been working with deaf people for a long time, into a consistent and coordinated fabric of institutions with adequate financial resources.
At the same time, there are growing synergies between Paris and the regions of France. All the participants (associations of the deaf, health and mental-health professionals, training centres, etc.) are not necessarily seeing a parallel and similar growth. In Lille, for example, the Sourdmédia association has already been open for several years now, and is currently working toward the opening of a health-care centre for deaf people. And yet, the region itself is one where few medical professionals have shown willingness to work in this direction.
Thus, we are seeing increased links between Paris and the provinces, between the public service, non-profit and private associations, between health professionals and associations for deaf people, between the academic world and hospitals, and between universities themselves. We are also seeing governmental think-tank-style commissions working on new practices in the field.
In today’s Congress, we have the immense pleasure of meeting with colleagues from around the world. I would like to take advantage of this opportunity to widen the scope of this discussion, since we are living in an age of large-scale, indeed, planet-wide social changes.
Fist of all, I would mention the construction of Europe. Europe, and this is a truism, is not merely the result of an accumulation of countries wishing to co-exist peacefully. The harmonization of European standards as well as of many administrative, political, judicial, and economic structures is creating the conditions not only for a phenomenal increase in exchanges, but also for radical transformations in the functioning and political structures of the Member States.
A sign of this phenomenal increase in exchanges is that Bob Clowes, Executive Director of the ESMHD, has been able to organize European partnership projects (the most recent being MADE and INCLUDE). I would also cite the number of scientific exchanges, seminars and study-visits organized by the ESMHD these last years. All this points to the tremendous dynamism that exists between European NGO’s, under the auspices and with the financial support of the European Commission. This is indeed what is pushing governments in all these countries to take into account social-welfare objectives that so far have been neglected, little known, or misunderstood. For instance, last April, the deaf community in France organized a Congress for Deaf Senior Citizens for the first time. Issues such as the well-being of these senior citizens, the conditions of their retirement, etc., were discussed. I was able to present a videotape at this conference, produced by the De Gelderhorst retirement home in Ede, the Netherlands, where my visit last year created a strong impression on me and the other visitors of our group. The videotape received strong reactions, and many of the participants requested the address of the home, in order to go and visit it.
Exchanges are therefore occurring at all levels, between professionals, NGO’s, users, politicians and administrators. There are discussions, visits, comparisons, and people are testing the validity of concepts and practices. Indeed, it is through this process, that a new order will see the light of day.
Another example concerns the removal of borders. In the city of Lille, the Sourdmédia association I mentioned earlier is participating in the creation of a deparment for deaf patients as part of the project defined by the French government. The doctor most committed to and spearheading the project, Dr. Benoît Drion, is, however, Belgian and lives in Belgium, about twenty minutes away from Lille. A few years ago, this kind of cooperation would have been impossible, since national boundaries formed uncrossable lines, and laws made it difficult for foreign doctors to work in France. Another example is the following. Because there is no institution such as La Bastide in Namur, in Belgium, we professionals are obliged to send our French patients to La Bastide! Such collaboration is the result of disappearing national boundaries : the concrete form of a redefining of states and their interrelationships. Indeed, I am convinced that thanks to these profound changes that we are seeing in political conditions today, the secular demands of deaf people will at last be met.
Let us take the example of sign language and its official recognition by the countries of Europe. One of the last countries to have recognized at a parliamentary level that access to sign language was one of the fundamental rights of deaf people, is Greece. But at the same time, in France, this recognition is still to come. Petitions for sign language to be one of the subjects offered in the school-leaving exam, the Baccalauréat, have met with no results so far. However, a new event is helping to rekindle hope in this national recognition of sign language in schools.
In 1999, the European Charter of regional and minority languages was submitted for examination to the French government. Expressing an opinion widely shared by the French population, the Conseil constitutionnel or French Constitutional Council refused to approve the Charter, stating that “Individuals, in their relations with the public administrations and departments, cannot avail of a special right to use languages other than French”. I should point out that in France, for the last century, the public teaching of regional and minority languages has been officially repressed. And that people are just about beginning to see that perhaps the mere fact of state schools teaching in Breton or Corsican might not necessarily go against the ideals of the Republic. Last year, cabinet members of various ministries agreed to put sign language on the list of minority languages. Therefore, if this Charter were to be signed by France, and we will fight to make it happen, there is no doubt that sign language will have contributed to an evolution in mindsets, deservedly in favour of the vast institutional changes I have mentioned above.
Another example of change is the French Charter for hospitalized patients, dating from 1995. One of the articles of this Charter deals with access to care. It says: “Health care establishments must ensure that adequate medical and social information is given to patients, and that the means used for this are adapted to solve all possible difficulties that might arise in communication and comprehension on the part of patients, thereby guaranteeing equal access to information for all”. Dr Jean Dagron, Head of the Deparment for Deaf Patients at the Salpêtrière Hospital, has indicated that this Charter is insufficient because in reality, conditions for patient comprehension are not generally complied with. For instance, most hospitals have never bothered to sign formal contracts with interpreters for deaf patients. Jean Dagron believes rightly that the presence of an interpreter should not depend on the individual will of a hospital manager or a department head, but should be part of the regular working of public services, and that patients must be allowed to express themselves on their particular needs. A public petition has therefore been launched with a view to amend this article of the Charter so that it reads “health-care establishments must ensure that adequate medical and social information is given to patients, and that the means used for this are adapted to solve all possible difficulties that might arise in communication and comprehension on the part of patients, in accord with the patients’ wishes or upon their request”.
I would add that the importance of this addition is crucial. The Charter for hospitalized patients is not a law but a regulation that defines usage in very general terms. You might note that this amendment sets up no positive discrimination but merely specifies that all users, not only deaf people, have the right to intervene in how care is provided to them; that they are participants and not merely the objects of the process. This is another way of ensuring that deaf people become more than just targets of traditional sympathy and charity on the part of hearing professionals. Indeed, that they express their demands as independent subjects. You will also note, I am sure, that as regards all users of the hospital system, the amendment of this Charter, if accepted – and it is in the process of being so – will be a major contribution on the part of the deaf-rights movement towards the well-being of all people in society.
Beyond Europe, there is globalization. Here I will draw from the outlines of an analysis put forward by a group called “Alliance for a Responsible and United World”, easily found on the Internet (www.echo.org). Globalization is a buzzword today. And yet, it is a fact, an irreversible fact. The growing interdependence of human beings, societies and geographical areas points unavoidably to a common destiny for all humanity, on a planetary scale. And naturally, one can neither be in favour or against something that is inevitable. One can only hope to meet the challenges it poses. We mental-health professionals are facing social changes of an unprecedented scale, leading us all toward radical changes in traditional forms of thought, action, and professional practice.
The process that I described briefly at the European level is the same on the international scale. The current problem, however, is that public regulation systems remain primarily at the Nation-State level while everything else defining our future is outside that framework. Civil society and NGO’s, such as the ESMHD, therefore, need to meet the challenges by playing an active part in these changes. For instance, I am sure that the evolution in attitudes I have described for the French government are identical to developments you have seen elsewhere. In fact, most of the issues handled by NGO’s, whether they are environmentalism, human rights, gender equality, equitable trade and, as far as we are concerned here, the rights of deaf people, have at first been regarded by governments with a mix of indulgence and exasperation before these issues could assume their rightful place in the political arena. Therefore, while the territories of power are being redefined, our role is to carry to the highest levels our struggle against all forms of discrimination and exclusionary policies, through initiatives that arise from within our ranks but which then become part of important political decisions. To become major actors in the dialogue between nations, the ESMHD for Europe and all the equivalent associations in the world must build alliances and demonstrate their ability to handle problems in all their complexity.
It is not a chance fact that the first World Congress on Mental Health and Deafness was held two years ago and not ten or twenty years ago. It is not a chance occurrence either that the first Latin American Congress of Mental Health and Deafness was held two months ago. And it is not by chance that we are here together today. The health of deaf people, be it general or mental health, has become a recognized public-health issue, and has contributed to expanding the idea of the common good. Our duty as health professionals, together with all the participants of an active civil society, is to work toward the improvement of the well-being of populations in their entirety, even as we remain attentive to the profound changes that occur around us.
Thank you.
Alexis Karacostas, Psychiatrist, Department for the Deaf, The Salpêtrière Hospital, Paris, France. President of ESMHD (Election of Presidency took place at the conference).
Mental Health Services for Deaf People – A Worldwide Perspective. Proceedings of the 5th European and 2nd World Conference on Mental Health and Deafness, University of Copenhagen, 18th-21st of October 2000. Edited by Tina Hjortsø, Lars von der Lieth, Camilla Carlsen on behalf of European Society for Mental Health and Deafness.