Frame document:
The European Rom Community facing drugs and HIV/AIDS phenomena

Introduction

The European Network SASTIPEN is the result of an initiative that began in 1995, when the Asociación Secretariado General Gitano, with the support of the European Commission and the Spanish National Plan on Drugs, started a programme which intention was to knowing the needs of the Gypsy population regarding to the effects caused by drug dependencies and HIV/AIDS.

As the time went by, and the Network was gaining consolidation, this process was joined by partners from community countries where the Gypsy population is subject to similar dynamics. Our aim is to get the involvement of every European organization which is interested in working with this population in the field of health, especially in drug dependencies and HIV/AIDS, in order to consolidate a European area of knowledge and information on the situation of the Gypsy population in Europe, with the possibility of becoming a valid mediator for the administrations regarding this issue, and one who claims their involvement with a population traditionally forgotten when designing social policies.

The mobilization of the social agents is another of SASTIPEN Network's priority objectives. This strategy has encouraged the generation of prevention/intervention initiatives, exchange of information, significative experiences and good practices.

Finally, it has also encouraged the creation of a shared knowledge from elements of common interest, on the analysis of the situation of the Gypsy drug dependent population, and intervention methods and strategies.

In brief, the SASTIPEN Network offers a meeting point to think about and exchange, a platform to promote actions aimed at the improvement of the quality of life and the health of the Rom community, through the intervention, basically, in drug dependencies and HIV/AIDS.

THE GYPSY POPULATION WITHIN THE EUROPEAN FRAME

One of the basic features of the Gypsy European population is its notably transnational nature. We face a community who constitutes an ethnical and cultural minority, present in Europe since the 12th century, and settled in every European country as early as the 15th century, prior even to the creation of most of the current nations-states.

It is estimated that the Gypsy population living in Europe totals 8 million people. A great number of them live in the community countries, most of all in the Mediterranean.

Diversity in homogeneity

The European Gypsy population is quite heterogeneous, regarding to their differences among groups, their levels of social and educational promotion and involvement, access to housing... although they keep a feeling of shared identity, and a will to acknowledge themselves, and to be acknowledge as such. They form a "mosaic of diversified groups" (J.P.Liegeois and N.Georghe, 1995) which constitutes a whole and, at the same time, every element from that whole has its own individual features that, taken in an isolated way, make it appear as different to any other component.

The variety of groups and situations is an obvious sign of diversity, but no community can be understood isolatedly. In some countries, the Gypsy population forms an homogeneous and compact group, however, in other countries several different subgroups live together. In spite of this diversity there is, as we have already mentioned, a feeling of proximity and community, a shared feeling of "being Gypsy".

The great diversity that this population offers does not hide the existence of some common identity traits and, too often, of similar problems. We can point some elements that characterize the whole of this population (Gamella, 1996):

• Their common origins and history, evident even in genotypical features.
• The use of related linguistic forms.
• A shared number of traditions, customs, ways of life, values and forms of expression.
• Their willingness to be Gypsies, and to be recognized as such by the rest of society.

To these general features we must add their coincidental social position in our countries. Their conditions of socio-economical shortage, their educational shortfalls, their difficulties regarding their integration as citizens... put them among the collectives in a greater need of attention from our community setting.

A community subject to a strong transformation process

The Gypsy population has experienced some changes in the last 25 years, sometimes deeper and more relevant than in the previous 500 years (as happened to some other groups). The cultural change is inevitable, and often even desirable by the Gypsies themselves. This process is not taking place in every Gypsy group and community at the same pace nor in the same direction, for some of them are promoting and incorporating themselves into the broad areas of the new middle classes in Europe, whereas others are becoming more and more integrated in the increasing marginalised and outlying areas of our cities.

The new social context is affecting the construction of the Gypsy identity, family rules, authority and their beliefs. Some symbols are disappearing, others are becoming less relevant, certain norms are seen through some kind of relativism, and some values are questioned.

The European Gypsy community is, therefore, subject to an important process of change in every aspect; some deep alterations are happening, as well as new adaptations in their customs, ways of life, and family, demographical and social structures.

In spite of the continuing process of promotion of the Gypsy population, we can underline that, in general, this is one of Europe's most unfavoured groups. Its life conditions are severely deteriorated, sometimes even reaching the sub-human. In these circumstances, it is not easy to try to keep a cultural identity.

Likewise, it is easily visible that the Gypsy population is left outside of any political decision, with a very low level of participation in the making of decisions and in the society's general evolution. To all of this we could add some rejection provoked by the generalization of stereotypes, that does not help the improvement of their life conditions nor their social promotion, but it does help the maintenance of a negative social image.

They endure, as a group, more difficulties regarding their social and labour integration than the non-Gypsy population. The current financial situation of the European countries has made it impossible to maintain labour activities traditionally developed, besides their difficulties to adjust themselves to current changes. There is, furthermore, a significant difference in labour training, and a great under-utilization of many of their skills.

About Health

As for health, this is for the Rom population, as for any other, a relevant pointer of inequalities, of quality of life and of active participation in society. However, in this case, among other pointers, we can verify a life expectancy inferior to that of the non-Gypsy population in the same countries. The access to health and care resources in general, culturally rather out of reach, have created an added difficulty for their utilization as citizens in their own right.

The irruption of drugs in the life of the Gypsy community is another factor that contributed to reinforce an image already deteriorated by the factors mentioned so far.

DRUG DEPENDENCIES AND HIV/AIDS RELATED PROBLEMS REGARDING THE GYPSY POPULATION

Among the health-related problems, drug dependencies and HIV/AIDS are singularly affecting the Gypsy community. This is due to several reasons: firstly, because it is a demographically young population, vulnerable to drugs abusing; secondly, because it is altering its traditional social structures; and thirdly, because it is severely damaging the image of the Gypsy population as a whole, plus it is another factor that adds new difficulties to their social promotion and involvement.

The impact of the phenomenon in the Gypsy community

Since the first steps, all over Europe, towards the creation of the care networks for drug users, until the current situation, we can say that Gypsies have been the last ones to arrive and the latest to get involved in the abusing use of these substances. Also, if adequate measures are not taken, they may be the last ones to get out and to profit the prevention and care efforts that are been executed in European countries.

We could describe the incidence of the drug phenomenon on the Gypsy minority by analysing three levels or fields where its impact can be noticed: drug dependency, social structures and institutions of the Gypsies, and social image of the Gypsy community.

The social relationships between a minority and the majority are impregnated with prejudices and stereotypes. One of the main mechanisms in the creation of prejudices is generalization and/or over-representation. In the case we are dealing with, the excuse is the existence of a minority of Gypsy families who deal with drugs, an excuse which has led to the elaboration of this new stereotype (that affects a whole collective) of the Gypsy as a dealer.

In our democratic societies, we tend to believe that there are not many those who consider themselves or who offer openly racist attitudes. There are arising, however, new elements that condense, as the same time as they hide, this kind of attitudes. Drugs have become, thus, the new referent used to stigmatise the Gypsy population, denying the reality that also Gypsy families are suffering their consequences, sometimes in a greater extent or with less tools to fight them.

The damage in the social image of the Gypsies has direct consequences, too, in the field of the care for drug users or in phenomena like AIDS, since there has been an attempt to hide the existence of drug users and, even more, of HIV/AIDS cases. This makes it difficult and delays the involvement of the Gypsy communities or organizations themselves in any specific program or action, and it also contributes to make it difficult for drug users to have access to health services.

The difficulties for a social and labour integration for wide sectors in this community, and the loss of traditional labour niches, has encouraged some Gypsy families to turn themselves to the selling of drugs as a means to make a living. Several circumstances have facilitated the involvement of some groups of Gypsies with this business:

• The existence of degraded settings with little social internal and external control, which facilitate this kind of illegal business promoted and profited by the drugs traffic networks.
• The difficult social and financial conditions some groups of Gypsies are currently going through. The loss of their traditional jobs, such as scrap dealing, travelling sales, etc., which is forcing them to find new ways to make a living, ways for which they lack the adequate means.
• The chance of getting high financial profits, with a minimal effort, within so needy a setting as many Gypsy families are.
• From a social and anthropological point of view, it has been said that the very own traditional organizing structure of work within Gypsy families has been adapted and used for the selling of drugs.

Due to the deep ignorance regarding to the Gypsies, people just get their most shocking (as well as distorted) behaviours, which, in truth, always belong to very minority groups. Thus, we get to know and appreciate a minority of Gypsy artists who show their art, whereas, on the other hand, we observe the unlawful activities of some marginal minority. Between these two extremes, the vast majority of the Gypsy population lives among many difficulties, building up the means to keep on being a Gypsy nowadays, and wishing to be an active segment of a state (with their rights and duties) of which they are an important group.

If the image of the Gypsy as a drug dealer has had some kind of success within their social representation up to the point of forming a new stereotype, the role of the Gypsy as a user, as a drug dependent, however, remains hidden or has received less attention.

It is often unknown or ignored the reality of the effects of drug abusing among a especially young population, subject to a heavy mutation in their identity signs. It is another hidden reality, even within their community, and, on the wake of it, it exists an important segment of drug dependents which are "neglected" or unknown.

It is greatly difficult to carry an approximate estimation on the prevalence of drug dependency among the Gypsy populations. The fact that the very own families hide the use (out of shame, or because it will make it more difficult to get their children married, or because it can be the source of many conflicts...), plus the lower demand of care in normalized centers, and the non-collecting of data regarding their belonging to a certain ethnic group on these services' clinical records... make it harder to estimate it among the Gypsies than among the general population.

However, we do have noticed the relevance that Gypsy organizations, support groups or other entities working with this population give to the phenomenon of drugs use. This situation offers a number of coincidences in the repercussion that the drugs phenomenon, and that of HIV/AIDS, are having among the European Gypsies:

• Drugs use is having a relevant incidence among the Gypsy population. We must think that it is a "young" population (i.e., 65 % of the Spanish Gypsies are under 25, and this phenomenon happens all over Europe). The available data on Gypsy drug dependents indicate that they start using drugs 2 - 3 years earlier than the rest of the using population.
• We have noticed that, in marginal segments, young Gypsies and children are getting involved in the precocious use of drugs, which requires a specific proceeding that is not taking place.
• Gypsy drug dependents do not have access to care services and treatment, nor do they profit the damage lessening programmes existing in our countries. This situation is due to the lack of confidence and of information among the Gypsies, and to the incompetence of the care facilities to adapt themselves and to reach this kind of population.
• Gypsies do not profit, as much as other people, policies and programmes of primary and secondary prevention, both regarding the use and abuse of drugs, and information on AIDS, programmes of syringes' exchange, etc.
• In some countries, we can notice a higher rate of HIV/AIDS cases regarding to the rest of the drug using population, plus a lack of prevention measures on transmissions nor of the use of pharmacological restraint therapies.
• The lack, or shortage, of care and prevention measures adapted to this population is creating the chronicity of problematic drug using, of the psycho-social problems of these people, and of diseases related to drug use.

Impact on the social structures and institutions of the Gypsy Community

Quite frequently, one can hear the Gypsies moaning over the dangers drugs have brought to them: "nothing has beaten us yet, but drugs can", "those who deal with or use drugs are not (true) Gypsies".

Drugs are affecting some sensitive aspects of the Gypsies' coexistence, social structure and mechanisms of social control. One of the reasons why drug dependencies have become one of the main "problems" in the social discourse may be their capacity to create the people's destruction and to bring drama to the families... These aspects are sharpened in a population where the role of the collective and of the family are crucial, where the individual is such as related to the group, and to the kinship system of which they receive their social personality. They affect, thus, structural aspects of the community in a way so far unknown, and transmit a feeling of danger and alarm, as well as some new situations to which one does not know how to respond. Occasionally, drug selling, this new source of income, has undermined the forefathers' authority and prestige.

Besides, drugs are a referent that hides other problems. If this is and has been so in our society as a whole, it is more among the Gypsies. We have already mentioned the processes of exclusion and xenophobia that have got new breath due to the drugs excuse. Drug dependency is affecting certain groups of Gypsies, creating or increasing processes of social, familiar and cultural disintegration among an already vulnerable population.

It is, thus, an European phenomenon that needs global answers to situations often chronic, which add themselves and accentuate a process of marginalization and social unadaptation which, in some cases, had begun to be solved. The movement of groups of Gypsies from Eastern Europe is beginning to aggravate this situation, and forces us to face the need of creating answering structures, joint and valid.

CHALLENGES FOR ACTION

One of the aims of this paper is setting some performance guidelines, which can offer an answer to the problems that are affecting some segments of the Gypsy minority. Starting of such an action implies the mobilization of important financial and personal resources, and the creation of expectations, which we must make more profitable, by granting their continuity.

Therefore, we face the need to keep on moving forward and deepening in the ways already started, and to begin opening some others. These challenges for action may be summed up in two levels of intervention:

The "Gypsy issue", their needs, their input, their aspirations, the problems they are subject to... must be recognized and included in the policies' planning carried by European institutions and programmes.

In the field of health and, more specifically, in that of drug dependency and HIV/AIDS, it would be necessary to promote policies and to set guidelines and intervention priorities which make it easier for the Gypsy population to profit from technical and financial resources... which, in the last 15 years, have been restraining or lessening these phenomena’s' effects, and to which the general population does have had access. By these, we mean both care facilities and prevention or damage lessening programmes.

The Sastipen network wants to claim this area as a platform from which to promote actions aimed at the possibility, for the Gypsy population, of profiting the implementation of policies and resources as European first-class citizens.

• National level:

Every nation must recognize the difference, and the need to execute coherent policies based on that difference.

It is not a matter of creating specific resources for the Gypsies, since this would provoke even more discrimination, but to start, from those national policies, specific performances, which aim is a normalised utilization of resources. The European citizens' theoretical equality is provoking in practice a discrimination of minorities and socially unfavoured groups; hence, we must employ differential strategies in order to get a true equality.

On the level of the policies of those states belonging to the European Union, it would be the national, regional and local Plans the ones responsible for executing these intervention guidelines, since they are the closest to the citizens, and those which can specify the actions that imply a direct impact on the users.

Each and every one of these policies must be made concrete in the definition of specific priorities for the action and of the intervention strategies.

Priority intervention strategies

Our experience in drug dependencies and HIV/AIDS intervention with the Gypsy population provides an intervention pattern and a series of strategies of performance greatly verified, which are already beginning to offer results and which prove that it is possible to intervene.

The European Gypsy community is beginning to react against this situation and, although at the very first moments the organizations and groups that were working with the Gypsies avoided to deal with those issues, out of fear of transmitting an image which could relate them to drugs or AIDS, currently it is prevailing the need to giving a response to this situation, carrying prevention actions within their community and collaborating with the institutions devoted to the care of drug dependents.

In some community countries, the lack of -or the low presence- of a Gypsy associational movement makes it more difficult to develop prevention and care actions, or, in any case, lessens the impact on their ultimate addressees of those actions carried by other organisms or administrations.

In this sense, there are priorities for the joint work within the frame of the Sastipen network:

1. To define an intervention policy and pattern with minorities

In this sense, there has been no consolidation of any drug dependency intervention guideline with specific groups, as it may be the case with the Gypsy population:

- The non-discrimination discourse is still prevailing, which means that there are some resistances to introduce changer to adapt the functioning of the services to the new populations.

- The people in charge of the administration have no common criteria on how to approach the intervention with the Gypsy population.

- It is still necessary to agree on certain patterns of performance where the care to drug dependents, prevention actions and the rest of performances with the Gypsies respond to a conception of drug dependencies, are approached in a global way, and include elements belonging to the population with which we are intervening.

It is, hence, necessary to set the political guidelines in the performance with minorities in the field of drug dependencies, both on a national and European level.

2. Prevention

If, in the field of the care to Gypsy drug dependents, there are important shortages, in practice the field of Prevention does not exist. The efforts on information, training and offering of alternatives that have been devoted to the general population have had little effect among the Gypsy population.

Prevention is one of the main bets to be developed with the Gypsy populations:

- The European Gypsy young people total more than 50 % of the Gypsy population as a whole; they are young people who find it difficult to identify themselves with a culture which is in the midst of a transformational process, and who even nowadays leave the school very early and do not have easy alternatives regarding their social incorporation. They are immersed in a culture that, until not very long ago, had programmed a direct transition from childhood to adulthood, and where adolescence had not irrupted yet with all its trouble. In brief, it is a population with relevant difficulties and risks which must be observed.

- It is urgent to act in those contexts which are more deteriorated, and where people under age may be exposed to the availability of drugs, and where there is an almost total lack of any other alternative activity.

- In most situations, prevention programmes must be accompanied by broader and non-specific measures which embrace aspects such as the educational and support their social and labour incorporation.

3. Care needs: Normalised services, adapted programmes

In the field of the assistance to Gypsy drug dependents, there is also a long way to go yet. We have already mentioned that care must be offered within the network of assistential facilities existing in our country, but we must move forward in order to improve the conditions that make possible that care:

- The Methadone programmes have proved a good entrance to the assistential network. Its low exigency and flexible functioning make them in practice "more intercultural facilities", and adapted to the Gypsies. Anyway, they must be an entrance, and not always a final resource.

- The care centers can (and must, should they have Gypsy population within their performing area) provide the necessary means and strategies in order to make it easier the access of Gypsy drug dependents, and their permanence in the treatment processes, by making more flexible some of their mechanisms, by incorporating to their staff Gypsy educators or professionals who have a deep knowledge on that culture; by collaborating or co-ordinating themselves with figures or structures which may serve as mediators, etc.

4. Damage lessening programmes and AIDS

Another field where there has been almost no advances is that related to the palliative actions, the information and prevention measures on HIV transmission and the care to people with AIDS.

- The resistances offered by the Gypsy community itself in order to approach an issue which may become another excluding factor, and the negligence or denial regarding the incidence among the Gypsies -from the organizations and services working on this field- are contributing to a lack of actions concerning this problem.

- The available data show that HIV and AIDS are having a relevant repercussion on the community. The affected people and their families are hiding the cases, and there is no knowledge of the serological situation of those people who perform risk practices. Likewise, we can observe that the adequate medical controls are not being performed, nor pharmacological therapies are followed, in spite of their increasing effectivity. In general, there is a great deal of ignorance, fear and disinformation on everything that is AIDS-related. This situation requires bolder and more urgent answers, but, at the same time, if we want them to be effective, these should be answers that are respectful towards the feelings and acting ways of the Gypsies.

- It is necessary to execute performances of awareness and of quality information about the phenomenon and how to prevent it, by using the adequate means so the message reaches its addressees: adapted campaigns and materials, educational group areas, introducing this issue in the training spaces already existing with Gypsies' groups, etc.

- It is necessary to carry interventions of a psycho-social nature specifically addressed to the affected people and their more direct relatives. The damage lessening initiatives must reach as well those Gypsies living in the most marginalised areas. The adapted information on the risks and prevention measures, the distribution of syringes, and an easy access to the methadone maintenance programmes, are measures to be included in a performing plan with those populations.

5. Social image of the Gypsies.

We have already pointed out how drugs-related topics are having a negative incidence in the way the rest of citizens see the Gypsies, and which is taking the place of, or being added to, those old stereotypes that surround this population.

Some of the objectives of our intervention (as a European network directly involved and committed to the Gypsies), and which we wish other institutions share, must be:

- Paying extra attention to the messages to be transmitted,

- Cultural respect, which is transmitted through the promotion of those cultural aspects,

- Occupying spaces for the Gypsies.

We believe that the initiatives to be developed with the Gypsy community must be oriented to provide a change in the image of this collective, by proposing adequate patterns that dismantle the usual stereotypes and prejudices.

In this very same sense, it would be convenient to insist and to influence pedagogically on the way the media treat any information concerning drugs and the Gypsy minority. It is a matter of preventing them from becoming creators or amplifiers of stereotyped and biased visions of the Gypsy community.

6. A working strategy with the Gypsies: the mediators

A strategy we have verified, and one that we know may offer good results, is promoting the incorporation, in the intervention with the Gypsy community, of mediating figures or structures.

The difficulties in the incorporation and maintenance of Gypsy drug dependents in the assistential processes, and in the development of prevention initiatives, might be lessened if the care services have educators, or other similar figures, who know the Gypsy population in depth. Gypsy associations themselves, or the groups working with this population, must assume this task, together with the involvement of the local and regional services and plans on drugs, in order to include them in their agenda.

This challenge implies a sensitizing work towards the services, the administration and associations or support groups. It also implies an effort in the information and formation of the mediating figures, and, finally, to devote willingness and means enough so the incorporation of the mediators may be something real.

7. Sensitizing, invigoration and counselling to the Gypsy Community itself.

One of the main aims is to incorporate the Gypsy community itself as actors in the intervention, moved by the idea that, only if this involvement takes place it will be possible to optimize the results of any preventive or assistential performance. Besides a previous sensitizing task, it is necessary to "accompany" and counsel these organizations in the development and management of the actions to be performed.

We consider the promotion of the associative tissue, there where it does not exist, a priority and a prior condition that grants the effectiveness of the actions to be executed.

8. Training actions.

Training is one of the basic tools in the development of this intervention. It is necessary to create several training areas which should be addressed to the two basic agents of intervention:

a) Members of the Gypsy organizations and of the support groups: They must get a training aimed at making it easier for them to get some knowledge on the processes of drugs dependency, on basic prevention concepts and strategies, on the rudiments for the planning and execution of prevention projects, etc...

b) Professionals of care services for drug dependents: In this case, the training must be addressed to make it easier for them to get some knowledge on aspects of the Gypsy culture, on the needs and possibilities and conditions for the intervention.

9. Elaboration of adapted materials

The existence of materials (explanatory, educational, training or supporting the intervention) which are adapted to the Gypsy population is an essential condition in order to guarantee the interventions' efficiency. The informative campaigns on AIDS or drugs executed so far have had little or no effect among the Gypsy population. Sometimes, because the channels were not the adequate, or because the messages and the form did not take into account the peculiarities of certain specific groups of population, as it has been the case with the Gypsies.

This project has started a working line that is aimed at the creation of materials addressed to:

• The final addressees (Gypsy population in general, and Gypsy drug dependents, women and children...). Basically, it would be papers of an informative nature on drug abuse, HIV/AIDS...
• Mediators and people working with the Gypsy population: It would be prevention materials adapted to the Gypsy population with specific contents on drug dependencies, prevention, AIDS, etc. They are conceived as support instruments to those people working with the Gypsies, and who wish to approach prevention actions within their community.
• Professionals and staff from care services: In this case, it would be informative materials on aspects of the Gypsy community that may facilitate the knowledge and the intervention of professionals with the Gypsy population.

10. Sensitizing of the professionals and care services.

Another basic strategy is the work with the staff in the care services for drug dependents. If we consider as a main problem the difficulties the Gypsy drug dependents face to get access to the care services, it is necessary to sensitize this collective in order to have itself adapted to the structures of their services so it becomes easier for the Gypsies to get involved, while guaranteeing, at the same time, that they receive the adequate treatment. In this sense, the actions to be developed must be oriented to getting meeting and training spaces, where the peculiarities and specific problems of the Gypsies are shown. It is necessary to guarantee the bases for a joint work between the centers and the Gypsy communities, aimed at facilitating the detection, access and maintenance of Gypsy drug dependents in the care services, and their later incorporation to the community.

11. Sensitizing of the administrations:

Local, regional or central administrations play a basic role concerning the design of priorities and policies of intervention. The assistance to the Gypsy collective needs to count on their involvement and, in order to do so, it is necessary to execute a sensitizing and "pedagogy" task with the people in charge of these fields.

12. Trans-national cooperation.

With a population spread all over the European countries, and which presents similar problems and needs related to the drugs and AIDS phenomena, trans-national cooperation appears as a strategy with a high potential. The exchange of experiences, the profiting of practices, patterns or tools, which have proved efficient in other countries, are some of the most obvious advantages.

PARTNERS

Spanish