♦ Mental Health and Deafness, Ethics and the Continuous Experience of Denial, 7th ESMHD Congress, Haarlem, the Netherlands, September 12, 2007
BY Alexis Karacostas
Friday April 6, 2018 0 Comments Non classé
Ever since Rotterdam in 1988, the ESMHD’s Congresses have made it possible to update professional practices in mental health and deafness and to evaluate the evolution of research, institutions and legislation relevant to this field. I have often come out of these meetings with a rich harvest of innovative and interesting ideas. These gatherings, at first European but which now attract practitioners from around the world in their own way participate in what we come to define as globalization, by the generalization of exchanges and by the increasing interdependence of research, institutional projects and national legislations. Thanks to the ESMHD’s study visits and sharing among special interest groups, we, as professionals in mental health and deafness, can measure the increasing daily impact of these exchanges in the development of our local projects. Thus, last year, professionals from Linz in Austria and Marseille in France compared their data relevant to the quality of life of Deaf people; conditions that induce anxiety, feelings of insecurity and low self-esteem which then lead to drastic consequences on the physical and mental health of Deaf people. The retirement home in Ede, visited by hundreds of Deaf consumers and professionals from throughout the world, is a European beacon for the improvement of the quality of life of Deaf seniors, and not only of Deaf people but of the whole community. I cannot give more examples and show the profound effect of these exchanges on the professionals of mental health and deafness in the field. The presentations and debates of the next days will provide an inventory of recent experiences. What I must emphasize here is that these exchanges have produced qualitative and quantitative data which are regularly provided to the health ministries in each of our countries and that these data support our claims because they endeavour for the improvement of the quality of life and of medical and psychiatric care of Deaf people. Institutional projects then use this information to define clear guidelines for innovative institutional practices. Finally, this abundance of projects urges change in the legislation which, in a growing number of countries, tend to recognize sign languages as expressing an ensemble of rights, as key to the Deaf community’s access to a variety of social roles and functions and, finally, as the heritage of all humanity. There is a true international solidarity, a process that we have all desired to develop since Rotterdam and which is now very much engaged. This is a good reason to feel delighted.
Yet, the process is far from linear. Its development has been tortuous. It is made up of steps forward and steps backward, and sometimes of bitter controversies on which directions to follow. Therefore there are many conflicts – not only conflicts between projects or ideologies but also among persons who lead the movement, which reminds us that we are all flesh and bones and fraught with desires, and that, behind group projects, there are personal commitments and particular human realities. All of this must be taken into consideration in order to advance and reminds us that, as mental health professionals, we must always work simultaneously in both directions, that of community (collective aspects and macro-social relations) and that of singularity (of the individual). Focussing projects on the individual without knowledge of the culture and social solidarity, or, on the other hand, missing the individual in the analysis of collective processes would create a risk of doubtful practices that may fail to reach their goal.
And the same thing happens within ESMHD : ESMHD has always been depending on the way its members conceive prospectives and on more subjective items linked to the relationship they established between them. ESMHD chosed me as its president during six years and I perfectly know that my two mandates would not have been possible without the early help of Nick Kitson, my predecessor, or without the collaboration with the members of the Executive Committee and especially with Bob Clowes, during many years the ESMHD Executive Director to whom we all owe much of our present situation.
The process of developing mental health and deafness practices is essentially conflictory. There is no single development model, and here as elsewhere, the unique thought is a sham. For example, we all speak different languages and at each of these international meetings, we must face the challenges of not only using the languages that we master less than our own mother tongue, but also of using words that do not always have the same semantic scope. The same thing occurs in interactions between the person who provides and the one who receives the care, between hearing professionals and Deaf patients. Patients and professionals are daily confronted with the shock of words or signs, of semantic errors, of the difficulty of expressing, of verbalizing in words or in signs the vividness of life, feelings and thought. Misunderstanding is everywhere in spite of our desire to understand. We must often resort to paraphrase, long explanations and examine concepts in every conceivable way in an effort to share them more efficiently. I often say that these obstacles, as embarrassing as they may be, often lead to extraordinary opportunities to share values. But this long nurturing process, which is not obvious and which is the basis of our professional practice, is plagued with conflicts.
Conflicts also suggest conflicting values and thereby open the door to ethics. We cannot advance without a light to guide our way, if no principle can be derived from our practices to legitimize our efforts. Therefore, these ethics, these value systems are not necessarily shared by all. That is why our confrontations must aim at convergence and help us find the way, as it has often been stated at ESMHD conferences, towards “best practices.”
Globalization itself is a conflictory process. There is no single model for globalization. Margaret Thatcher made the following comment on the said inevitable character of neo-liberal capitalism: “There is no alternative.” (TINA). (I borrowed the idea from the well-known linguist Noam Chomsky). The development of “best practices” necessarily requires conflict resolution models that do not always follow the same path: there is not only one way in which we can progress, nothing is obvious. If I could summarize in a single phrase, in a single idea, what motivates my presence here today, I would say that we must constantly fight TINA. Fighting Tina requires rejecting uniformity of thought and action. It means refusing that reality be lived as impersonal, mechanical, beyond human control, and finally unavoidable. Most of the progress made over the last twenty years in mental health and deafness is made of advances against an indifferent if not hostile social state but which were in no way unavoidable. Practices are born and projects developed in situations which resist and oppose their inertia. In order that sign language be recognized and that deafness be seen as a culture as opposed to an illness, there needed to be a concerted battle against various forms of denial and misunderstanding of deafness, a battle which is far from over. I would like to share a few examples with you to demonstrate my point.
In France, the first care unit for Deaf people was opened as a pilot project in 1995 and became official on January 1st 1996. Three persons (a hearing physician, a hearing social worker and a deaf laboratory technician) embarked on an unparalleled adventure: creating a service truly adapted to the health needs of the Deaf community, in a large hospital in Paris, the Pitié-Salpêtrière that employs 6760 staff and offers 1826 beds providing more than 120.000 admissions each year.
The creation of this unit was quickly followed by an explosion of requests from hoards of Deaf users who rushed to the unit. This confirmed what had been obvious to us for some time be which we had to prove to French public authorities that there were and are numerous Deaf individuals who receive little and inferior health care, that the misunderstanding of their needs is bound by the absence of accessible professional services and that this dearth is an integral part of the general denial by the community and its political representatives that Deaf people do exist. Since this unit was opened, eleven other such units had been established in France (in Lille, Marseille, Toulouse, Bordeaux, Grenoble, etc.). By 2006, there had been more than 60,000 consultations involving 6,000 Deaf patients.
The development of the 12 units has encountered many challenges. In 2002, Dr. Dagron, who had opened the unit in 1995, moved to Marseille where he successfully established a new health care unit. However, his departure from the Salpêtrière initiated a crisis which escalated until 2006. This is neither the place nor the time to elaborate on the reasons why the team was unable to replace its coordinating physician, reasons which are the result from multiple factors (political, economic, institutional and human). The team encountered a number of challenges: the gradual disorganization of collaboration among colleagues, the departure of colleagues whose positions were not filled and left key positions vacant, conflicts with the chief responsible for a group of units including ours, and the indifference of hospital administration allowed the conflict to escalate. The unit and services to Deaf people were increasingly affected by the situation: missed appointments, the growing lack of interpreters in consultations with specialists, errors in the communication of instructions resulted in incoherent care and sometimes absolute chaos. The chances of re-establishing a more coherent system of care depended on two factors: one, political support and the vigilance of the minister of health, public funders who ensure the proper functioning of all health units for Deaf people France and two, the exceptional mobilization of the Deaf community and/or clients of the Salpêtrière, associations that joined forces and decided to undertake spectacular manifestations to alert the public and to lobby the hospital administration. On April 25th 2006, a determined group of 60 Deaf occupied the hospital’s management offices. A week later, on May 2nd it is not the three expected Deaf representatives but 80 persons who invaded the meeting room and insisted that the present physicians and management participate in a clarification and planning meeting. This meeting took place in an overheated room, in the presence of interpreters in French Sign Language and before the cameras. Under the joint pressure of the ministry and of the protesters, management conceded on three essential points: the team has the right to select its coordinating physician, the vacant positions would be filled and authorization would be given to our unit to be removed from the initial service and be integrated in a new administrative structure. This meeting which was echoed by the media, was discussed at length in the Deaf community, especially in discussion groups on the internet. Shortly thereafter, the team honoured me by selecting me as their coordinating physician. Since that day in June 2006, by a complicated process that is not yet resulted in the complete restoration of our means, we have succeeded in restructuring the team, in partly reducing inconsistencies of care and recovering some of our initial enthusiasm.
But our troubles didn’t stop the progression of a more general reflexion on the policy of health and deafness in France. The ministry of health finally recognized the Chart of the Deaf user’s Rights proposed by all the health care units of France and approved a decree which states the conditions of creating a unit and operating it. This decree, which is quite similar to the wonderful “Signs of the Time” written some years ago by our English colleagues, is a new step in the definition of an ethical position towards health care for Deaf people. In particular and above all, the decree states that the hospital management has to adapt itself to Deaf people’ needs (by hiring Deaf professionals and interpreters, by using sign language whenever needed, etc).
Why am I telling you all this? Because I feel an immense paradox. In these times of abysmal deficits in funding for social security, of strict supervision of hospital budgets, of staff reductions, and of the deterioration of health care, how could inevitably expensive units of care for Deaf people come out of the blue? In these times of frantic oralism (with “mainstreaming” for all, the persistent rejection of sign language and deafness being seen as an illness), how can signing (and even Deaf) professionals of care, twice plagued have succeeded in contesting the ideological monopoly of those who perceive Deaf people as sick? In front of the ambient authoritarianism, as medicine becomes more automated and the hospital organizations become dehumanizing under the effect of competition and the idea of hospitals as business, how were Deaf people able to benefit from a start, still very modest, of improvements of their conditions of care (as users) and access positions of responsibility (as health professionals)? Once again, this is not the time to answer all these questions. It was just important for me to show you that contradictions in the system allow for the introduction of new practices which infiltrate and dramatically change traditional practices, and that the ill-being of Deaf people is not unavoidable. Tina is not a destiny. But the events at the Salpêtrière do demonstrate that, at any time, when Deaf people stop mobilizing, when the balance of power among professionals or beyond is weakened, the victories of difficult battles may become failures, insufficiently institutionalized practices sometimes wither away and return to the void from whence they emerged. More than ever, we as mental health and deafness professionals, with the constant support of Deaf community, must remain vigilant.
I will now present another example in the process of globalization which raises numerous questions with regards to the professional practices that concern us. I refer here to the huge influx of illegal immigrants, especially from Eastern countries, among which we find a certain number of Deaf people. As health care professionals, we are challenged by these Deaf persons on many levels: these immigrants do not benefit from the same social rights, and therefore, the same social coverage as French citizens. As a result, they do not have access to proper care. They must hide and their precarious income, obtained illegally, the fruit of undeclared work or various contraband, subjects them to exploitation which often borders on slavery. They (not always but) often have received minimal education. They do not necessarily keep company with members of the French Deaf community. They are under-informed, particularly with regards to health and sexually transmitted infections and are thus exposed to greater risk of illness. More than others, they are prone to anxiety and depression. Their life conditions, their stay in France present, above and beyond the legal implications of the rights of citizens, serious concerns for public health. And their presence brings another challenge that we thought we had surmounted with sign language: they do not know the sign language of our country – or, inversely, I could say that we do not know their country’s sign language – and our discourse often becomes as complicated as if we had never learned sign language at all. There is however an answer to this problem, often used in international congresses: resorting to mime and pictorial signs. We all know the extraordinary potential of the iconicity of sign language. With the help of teachers of sign language, the professionals in France’s care units have taken training – still too brief as far as I am concerned and that we must reinstate – which has encouraged us to forego sign language and train for pictorial thought and communication. We thus addressed the fascinating topic of human communication: If sharing sign language is a sine qua non condition of “best practices” with Deaf users, we have improved our practice by exploring the language where the conceptual and the verbal meet, in research whose benefits went far beyond our relations with foreign Deaf persons: I refer to Deaf persons who have never learned an established sign language, and beyond the grasp to hearing persons who present various neurological, psychiatric or linguistic challenges. The challenge of new problems (the waves of illegal immigrants) again evolved into research rich in linguistic interactions among human beings of all conditions.
I will now present another example: the workplace. Deaf persons have long been excluded from numerous professional activities, the traditional options open to them (manual labour, graphic arts, etc.) confined them to repetitive tasks, underpaid and with little diversity. Today, with policies on accessibility which have been developed in European countries, education and university can lead to more diversified careers where cooperation between Deaf and hearing people becomes more common. But this does not happen without pain: employment related health problems, now being reported by numerous Deaf patients, is documented from consultations. It is the source of mental and physical pathologies, another public health challenge for us. Globalization which increases competition among all and endanger everyone’s job with threats of relocation, particularly stresses Deaf employees who have accessed positions which have finally become accessible, to new sources of pathology. And our duty as health professionals is to consider these pathologies as intrinsically linked to the social integration of Deaf people and to provide them with treatment that takes into account the concrete existence and real needs of Deaf people.
Two other subjects are very controversial but which may not be ignored.
Cochlear implants are undoubtedly the salient topic at this time, both as a surgical technology supplemented with education for the rehabilitation of hearing and from the perspective of an oralist ideology for which it is unfortunately too often the spear-head. During a seminar which a linguist colleague and I organized this year in Paris, many Deaf and hearing professionals, ENT (Ear, nose and throat) physicians, adult Deaf users, persons with implants and parents of children with implants related their experiences, both good and bad. The least which can be said is that these experiences are not a matter of course and that, even though there are constant technical improvements, even though they sometimes bring satisfaction to those who have them, if not their families, cochlear implants are a gamble that can sometimes become a loss (it is then a loss of hope of auditory rehabilitation and psychological distress). The price of this gamble is sometimes loss of life, the unexpected appearance of different disabilities and new suffering caused by pre or post-operation complications. My intent is not to discredit implants, I am not at all campaigning against cochlear implants: it is rather to impress the fact that implant teams almost systematically dismiss any objection that criticizes or rejects this technology as if it could obviously always be successful. Every rehabilitative technique must be evaluated, discussed, analysed quantitatively and qualitatively from a multi-disciplinary perspective, by front-line workers but also by external, independent evaluators.
We now know that ENT physicians are not unanimous on the subject of implants and that the results are far from being as miraculous as promoters would lead us to believe. This should incite them to more restraint and to be more circumspect in their directives. But that is not the only aspect: the ideology of most medical implant teams (at least in France) is profoundly oralist (the desire to eradicate the deafness as an absolute evil, refusal of sign language and anything regarding Deaf culture and community). This results once again in frantic medicalization of the lives of Deaf persons, in the rejection and denial of their existence, and in practices that only see the deafness in them and leaves no room for them as members of a cultural community or as individuals able to lead their own lives in the context of their singularity. You all know that implants are now current and that their use is becoming increasingly restricting. However, implants do not eliminate deafness, the totalitarian implanting politics often result in the conceptual illusion of the “hearing deaf”, illusion that causes implanted Deaf persons to experience personal and social identity problems and psychiatric pathologies. It must be realized and said that the scientific community and the society of citizens are not in agreement on this topic, that there is a serious ethical concern and that debate is not only a possibility but a duty, the economic, cultural and health implications being so enormous. There is no inevitable destiny, no indisputable moral imperative nor unavoidable economic necessity in the distribution of implants. Here again, our responsibility is to generate an ethical debate and not linger in the illusion of a facade of unanimity, once more victims of TINA.
The same can be said of systematic, excessively early neonatal screening for deafness, in the second day of life. The desire to identify deafness as early as possible may be a good intention but the establishment in France of an experimental project for systematic screening on maternity wards immediately caused professionals and parents new worries, among which the exorbitant proportion of falsely positive diagnostics (negated two months after birth) and in all cases, rightly or wrongly diagnosed, to the psychological turmoil of the parent at the birth of their child, before any relation could develop between them. Here and now, the French National Ethics Committee has received a request from the French Federation of the Deaf and its objections against the policy of early diagnose of deafness must be seriously taken into consideration.
A red ribbon seems to link the situations I have too briefly recalled. In preceding congresses of the ESMHD, I often tried to show the enormous importance of accessibility policies of European countries, generally referred to as “equal opportunities for disabled people”. Recognition of the fact that Deaf people have the right to access any social role or function which is available to all citizens is a considerable step forward, but we must not forget that these successes are fragile, unequal and in many fields, still embryonic. We must decidedly do more and do it better. What the emerging “best practices” demonstrate is something altogether different that reaches far beyond equality of opportunity. The recognition of the health needs of Deaf people did not just affect medical practices for them. The presence of Deaf health care professionals on treatment teams, of interpreters and signing physicians and psychiatrists has considerably modified the provision of medical care by hearing professionals towards their hearing patients when they discover the world of Deaf people. Working in a broader scope of clinical consultation, in the presence of interpreters and Deaf mediators, and not the classic one on one encounter, treating in a language that is not the usual language of communication are challenging experiences for specialized physicians who must meet Deaf patients. The repetition of these experiences leads to certain modifications in the usual practices with their hearing patients: they admit taking more time to explain to their patients the nature of their affliction and the proposed treatment, they often worry that the patient may not have really understood the implications of the treatment, they resort more frequently to gestures, to mime and to drawing, they are less wary of expressing their feelings. It becomes easier to work in a clinical environment modified by the presence of a number of interveners. They discover that the modification of the clinical environment reveal other realities, unexpected because they were previously depending on repetitive and stereotypical work conditions. They perceive more acutely the importance of senses in the human relation, they are initiated to the subtleties of looks and glances as only Deaf people can teach us. We gradually discover that the presence of Deaf persons, as clients and as care givers, in the caring environment goes far beyond simple “accessibility”. It is the totality of our practices, of our ideology and finally of our relation with our environment that is changed when our denial of the existence of Deaf persons, – or any other who is different –, when our passion for sameness, the root of all racism, begins to dissipate.
I have spoken at length about France, but I believe that each and every one of us is challenged on a daily basis by the same questions. Much has changed in Europe. The multiplication in many domains of initiatives favouring the rights of Deaf people and, especially, of initiatives taken and fostered by Deaf people themselves has brought significant modifications to our society. New practices are being sought and developed. Deaf people are infiltrating all aspects of society and forcing hearing people to discover their presence. They force us to invent new behaviours and to abandon preconceived ideas. They impose their presence as they share with the hearing world, the joys and pains of a world which had been hitherto unknown. What has changed over the last decades is that the experiences are collective, mobilizations multi-centred and solidarities between hearing and Deaf are reinforced. When their hospital encounters problems, they intervene at that level that can prevent the yarn from completely unravelling. And it is not only a question of their health, of their well-being and their rights: they advocate for the health, the well-being and the rights of all citizens.
As you can see, the battle against the forces of denial and against Tina is a constant concern. So, let us join forces to affirm that there are one or even many alternatives to the woe of the world that is imposed upon us. We thus may discover and re-discover every day the diversity of human adventures that defy the pressure to normalize us and marvel us with the human genius! I wish you all enriching exchanges and thank the organisers of the congress for offering us the means to continue evolving. I also wish to my colleague and friend Ines Sleeboom, president of ESMHD, a successful presidency. Finally, I deeply thank my good friend, our Canadian colleague René Rivard who helped me by translating my speech into English. Thank you for your attention.