Drug user organizations in the Nordic countries – local, national and international dimensions.

Drug user organizations in the Nordic countries – local, national and interna-tional dimensions.
Vibeke Asmussen Frank, Jørgen Anker and Tuukka Tammi
The article focuses on drug user organizations that represent and advocate for active hard drug users in the Nordic countries. It discusses the opportunities and challenges that these organizations face in their search for legitimacy and political influence. The comparative perspective points at similarities and differences in national contexts that both support and challenges the existence of drug user or-ganizations, including drug policy, social welfare policy, trends in drug use, and organizational conditions. The article also discusses the importance of international network and transnational or-ganizations that support drug user organizations.
When drug users organize, they often seek to find solutions to problems experienced by drug users in general. They seek to serve as change agents by joining forces and collectively seeking solutions which will benefit others than themselves. The changes they pursue are often local in scope, yet they may also be national or even transnational. But the formation of organizations of drug users is not easy. Often these associations are faced by challenges and obstacles which must be overcome to ensure stability and continuity. The constituency and activists of drug user organizations belong to one of the most marginalized groups in society. When the members are troubled by many other problems it may be difficult to ensure stability and continuity in an organization. They risk getting
sick or dying, being hospitalized or incarcerated (Friedman et al 1987). Moreover, drug user organi-zations face another challenge because they are often regarded with scepticism or even suspicion by the surroundings. The illegal character of production, trade, possession and – to some extent – use of drugs place drug users’ organizations in a difficult position as they may easily be regarded as crimi-nal and therefore illegitimate associations (Anker 2007). However, drug user organizations exist and have existed for a number of years around the world (Anker et al 2006, ENCOD 2009, Johnson 2006, Mold & Berridge 2008) and it is worthwhile to seek to provide an overview of some of the experiences of these organizations.
In this context, drug user organizations are understood as organizations representing and advocating for active hard drug users, mainly opiate, but also cocaine or poly-drug users. Cannabis organiza-tions and ex-drug user associations are not included. The first drug user organizations came into being in the late 1970s in Holland, called Junkiebonds (Tops 2006). In other European countries, drug user associations evolved in the mid-1980s when AIDS became a major concern, due to the fear of an epidemic among injecting drug users (Mold & Berridge 2008). In the Nordic countries, drug user organizations emerged from the beginning of the 1990s.
Today drug user organizations are present in over 40 countries around the world (ENCOD 2009). Most organisations are based in Europe. Many of these associations have enlarged their scope and not only advocate health care and health information, especially in relation to infectious diseases and overdosing; but also promote drug users’ rights and position in society; support that drug users have easy access to drug treatment; seek to decriminalize or de-penalize drug use and possession of drugs for own use and to lower the penalties for drug-related crimes and further harm reduction measures (Johnson 2006:141-143). Another important task for these organizations is that they also
function as a place to meet and socialize with other drug users. Many of them have drop-in facilities and organize different forms of activities for their members (Anker 2006; Tops 2006). Overall one can say that drug user organizations have a double purpose: they have a political aspect where they try to influence drug policies; to represent the interests of drug users in national or local political arenas; and to spread information about drugs, the risks of drug use, etc. The other is a social aspect where they provide self-help and support to drug users; provide social networks for drug users; pub-lish magazines for and about drug users; create identity and recognition for drug users; and establish a free space, without stigmatization and control (Anker 2007; Tops 2006).
Many drug user organizations relate to international networks or non-governmental organizations that either work for more user involvement in political processes and/or advocate alternative drug policies to the prohibitionist line supported by the US and the UN drug control system. Important for drug user organizations are IHRA (International Harm Reduction Association) and ENCOD (European Coalition for Just and Effective Drug Policies). IHRA rose in 1995 from the annual harm reduction conferences established in 1990. It actively supports drug user associations, just as the annual harm reduction conferences are fora where drug user organizations from around the world meet and exchange experiences (www.ihra.net). ENCOD includes over 200 organizations around the world and supports changes in repressive and prohibitionist drug policy (www.encod.org). The Correlation Network is an example of a transnational organization established in the EU context that supports and takes marginalized groups into account in policy development. National and local organizations working to improve health care and health information to marginalized groups form part of the correlation network, including drug user associations (www.correlation-net.org). Lastly, umbrella organizations have been established by drug users or drug user associations themselves such as NAMA (National Alliance for Medication Assisted Recovery), an international organization
that promotes easy access to methadone treatment; and INPUD (International Network of People Who Use Drugs) that speaks on behalf of activist drug users and furthers drug users’ rights, recog-nition, and legitimacy (www.inpud.org, www.methadone.org). Furthermore, INPUD’s aim is to represent drug users in supra-national fora and boards, for example in the EU. Today, drug user organizations can get support if not locally or nationally, then from international networks and or-ganizations.
In this paper, we explore and address drug user organizations in the Nordic countries to give an overview of the drug user associations that exist here. The Nordic countries are characterized by a relatively strong welfare state, which plays an important role in the provision of social services and welfare. Moreover, here drug user organizations have existed since the mid-1990s, though with ra-ther distinct trajectories. Like other social movement organizations, drug user organizations reflect their environment (Kerr et al., 2006). This means that even if the Nordic countries resemble each other when it comes to the welfare system, the drug policies have differed from country to country, providing different opportunities and challenges for drug users who have sought to organize. Except Denmark, all the Nordic countries, have followed a relatively repressive drug policy seeking to limit and control drug use through criminalization of possession and/or use of drugs. Also excluding Denmark, all countries, have also been in favour of abstinence-oriented treatment and abandoned harm reduction ideas and initiatives (Hakkarainen et al. 1996). Today, however, the picture is more blurred. Denmark has changed from a liberal to a more repressive drug policy; and the other coun-tries increasingly embrace substitution treatment and harm reduction initiatives. The differences in drug policies influence what drug users can say and do in order to gain legitimacy (Anker et al. 2006).
The paper thus explores what makes drug user organizations exist in the Nordic countries and what opportunities and challenges they face. We take our point of departure in empirical research on drug user organizations in the Nordic countries and put their history, organization, and significance into perspective by using theories on social movement organizations. These theories generally aim to understand and explain why social movement organizations emerge; how they are organized; how they interact with other actors in their respective field; and why some movements succeed while others fail. In these considerations, we especially focus on the importance of the political opportuni-ty structure and political processes for the success of drug user organizations (Tarrow 1994; McAdam, McCarthy & Zald 1996); the importance of resources (both human and financial) (Zald & McCarthy 1987); formation of collective identities in order to make drug users identify with the-se organizations (Melucci 1996); and the discursive struggle to define truth and falsehood, right and wrong in a particular field, here the drug field (Johnston & Noakes 2005). These different theoreti-cal leanings each contain important analytical clues as to how the differences between drug user organizations in the countries included here are understood. We do not propose to offer a full-blown theoretical argument that gives full credit to the different theoretical stances, but rather to formulate some general lessons or theses concerning the character, the strengths, and the weaknesses of these organizations. Research into drug user organizations in general and the possibilities and influences they have on society is scarce (van de Wijngaart 1991; Anker et al. 2006; Kerr et al. 2006; Mold & Berridge 2008; ENCOD 2009). Comparative studies on drug user organizations are even more few and far between (Anker 2008, Friedman et al. 1987). The present article thus hopes to further widen the knowledge we have on drug user organizations; however, it does not claim to be able to answer all questions asked.
Data and methods
The article is based on ongoing qualitative research conducted by the authors on drug user organiza-tions in Denmark, Finland, Norway, and Sweden since 2004; as well as already published articles on drug user organizations in the Nordic countries. The qualitative data include participant observa-tion in drug user organizations in Denmark and Finland; qualitative interviews and informal discus-sions with key informants in all countries – in all, more than 40 semi-structured qualitative inter-views are performed with participants in drug user organisations between 2004 and 2010; as well as various written material consisting of e-mails, web pages, print media, annual reports, and other documents from the drug user organizations in all four countries. The authors have consent from all drug user organizations where either participant observation and/or qualitative interviews were per-formed. The amount of data varies significantly from one country to another, and some organiza-tions are better researched than others. The already published articles on drug user organizations that the present article also refer to stem primarily from a book published in 2006 (Anker el al. 2006). All three authors participated in this book publication.
Drug user organizations in the Nordic countries
The Danish Drug Users’ Union is the oldest and most stable user organization in the Nordic coun-tries (DDUU). It was formed in November 1993 when a popular public activity centre for drug and methadone users was closed down. In relation to this, some of the users agreed to form a drug users’ union in cooperation with some supporters (social workers and a group of drug-user relatives). The DDUU is a national interest organization, but in practice most of its activities are local (covering Copenhagen). It has been able to remain in the field ever since. There is also one other drug user
organization in Denmark, called StRIS (Drug Users’ Rights in Society). StRIS is local in scope and consists only of very few active drug users. Its level of activity is very varied and sometimes non-existent.
The DDUU is a formal organization with elected chairperson, an elected executive committee, an annual general meeting, by-laws, etc. (Asmussen 2003). The overall aim of the organization is to represent and promote the interests of active drug and methadone users. It tries to detach itself from the denomination of drug abusers or drug addicts and refers to its members as active users, meaning that they are not just helpless victims but citizens with rights and resources. It runs activities of sup-port, information, and advice. It works towards exposing the social, political and economic condi-tions in the drug field and to uncover how these conditions affect the individual drug user. The aims and efforts of the organization are directed towards both political aims (influencing drug policies) and social aims (different kinds of self-help activities and initiatives to help and support individual drug users). On the one hand, it serves as a national interest organization for drug users in Denmark. On the other hand, the association carries out social work and it runs a drop-in centre for drug users on its premises. For a number of years, the DDUU has collected used syringes that have been left by drug users in the streets in specific areas of Copenhagen. For a couple of years they were hired by the municipality to do this.
It is noteworthy that the DDUU has been in existence for more than 15 years. There are different reasons for this. First, it has been supported economically by both local and national authorities. Second, the organization has had the same President since the mid-1990s, which has ensured inter-nal stability in the association. Third, the DDUU has been able to maintain a stable membership base of approximately 641 members and to keep a core activist group of about 15 persons (for fur-
ther details, see Anker 2006; Jepsen 2004). Drug users must be able to engage in and organize ac-tivities for other members in order to become part of the group of core activists. Sometimes the core activists describe the DDUU more like a family than a formal organization. Yet, even if this may explain the capacity to remain in the field for so long, it may also explain why the DDUU has not been able to set up local branches in other Danish cities.
Furthermore, the DDUU has gained recognition as an entity which should be taken seriously, and the authorities recognize it as a legitimate interest organization. The DDUU participated in the advi-sory body to the Danish parliament known as the Narcotics Board (until the Board was closed down). Moreover, the organization has been invited to participate in more advisory boards than it has the capacity to participate in – not only in Copenhagen, but also in other cities in Denmark.1 The DDUU is also active in writing up statements and has been involved in discussions concerning the practical organization of new heroin treatment.
For the past 20 years, the DDUU has been favoured by the fact that the Ministry of Social Affairs has supported harm reduction policies and promoted interest organizations for marginalized groups. But other key actors in the field, especially different harm reduction initiatives, speak in favour of drug user participation in social services as well as policy processes. The DDUU today exists in a context where harm reduction is an integrated part of Danish drug policy and different harm reduc-tion measures like methadone maintenance, street level nursing, needle exchange, drop-in centres and hostels for the homeless are well developed in many larger cities in Denmark (Asmussen & Dahl 2002). From 2009, heroin treatment has been implemented as part of ordinary treatment offers to the most severely affected drug users.
1 Interview with the President of the DDUU in January 2010.
Besides the national context, DDUU also participates in international policy work. The DDUU has a number of international contacts and participates actively in various conferences and networks; e.g. NAMA2 and the annual harm reduction conferences organized by IHRA. Moreover, the DDUU hosts international drug user meetings, most recently in 2008, when more than 100 drug user activ-ists from all over the world participated, and supports the newly established umbrella association for drug user organizations, INPUD. They also participated in the Correlation Network and their work to implement more accessible user participation for marginalized groups in the EU and are members of ENCOD. In that sense, the DDUU not only places itself in local and national contexts, but in an international context as well.
In Sweden, the first organization of active opiate users and people in maintenance treatment was founded in 2002 and called the Swedish Drug Users’ Union (SDUU). The SDUU represents opiate users and people who need or are in maintenance treatment. No other drug user organizations exist in Sweden. Many of the aims of the Swedish organization are similar to its Danish counterpart, and the two associations cooperate when possible. Thus, the Swedish organisation is build up in the same way as the Danish with an elected chairperson, an elected executive committee, an annual general meeting, by-laws, etc.
The motivation to form the organization emerged because many drug users experienced that they could not get maintenance substitution treatment because of an abstinence-oriented drug policy. Traditionally, drug use in Sweden had been dominated by intravenous amphetamine use, yet heroin
2 The President of the DDUU is International Director of NAMA.
use has increased steadily since the late 1970s. Amphetamine is still the most commonly used drug (34 %) among drug clients in treatment, followed by heroin (22%) (Reitox National Focal Point, 2008). Substitution treatment has not been applied on a large scale and has always been surrounded by strict regulations with a centrally determined fixed ceiling on the number of people that are al-lowed into maintenance treatment. In 2007, 3.115 persons were in substitution treatment with meth-adone or buprenorphine, a number which has increased markedly during the last decade. Officially, the substitution programmes in Sweden are oriented towards total abstinence, e.g. are doses gradu-ally lowered and the patients are not informed about the quantity of methadone they receive. Urine screenings are carried out to ensure that there is no leakage from the programme and to ascertain that patients do not use illegal drugs. If traces of heroin are found, the patient is expelled from the programme and excluded for two years. In different ways, SDUU seeks to oppose and denounce restrictive practices of the substitution treatment.
In the beginning, SDUU was supported by the non-governmental organization RFHL (National Association for Aid to People Addicted to Drugs and Pharmaceuticals) that works for a society without drugs and addiction. In the beginning, SDUU was hosted by the RFHL. After a year, how-ever, the organization sought to become more independent to avoid unwanted control by non-users. One of the limits set by RFHL was that drug users visibly influenced by drugs were not allowed onto the premises, which made the organization move to another place (for details, see Palm 2006; Anker 2007).
The organization has approximately 1.375 members. In Stockholm, 12 persons work there on a dai-ly basis while 10 others help occasionally at events, seminars, etc. At demonstrations, the President explains, approximately 100 members can be mobilized. It is a national association based in Stock-
holm with 8 local branches in different Swedish cities (at these local offices, there are an additional 12-15 people). In its homepage, the association explains that the main ambition of the organization is to facilitate an authentic dialogue between drug users and the different institutions in society (whether related to the social system, the health system, the political system, or the media). The organization seeks to increase user involvement through the formation of branches; i.e. local city-based organizations which take up user concerns in direct dialogue with authorities and represent drug users locally. On the other hand, the national branch of the organization seeks to follow up on national concerns and represents drug users in the media and in political debates on drug-related issues. It is, however, difficult to keep the local organizations alive.3 The local branches are charac-terized by ups and downs, and sometimes the organizations stop functioning because it is difficult to find activists and keep them engaged; or because local internal conflicts occur.
In recent years, the Swedish Drug Users’ Union has gained support from both central and local au-thorities. The association thus receives funding for both the national organization and for local branches. The SDUU is member of a user council at the Board of Social Services, and the local chapters are locally involved in dialogue with municipalities around Sweden. There is also a net-work of sympathizers, called Swedish Drug Users’ Union Friends; consisting of academics, journal-ists, etc. who support the SDUU. It consists of 20 influential persons who are working to promote the perspectives of the SDUU in the public.
The increasing recognition of the SDUU takes place at a time where certain aspects of the tradition-ally repressive Swedish drug policy are challenged. Swedish drug policy is based on the idea of a drug-free society; abstinence as the only goal for social and treatment intervention for drug users;
3 Interview with the President of SDUU January 2010.
and the possibility of compulsory treatment for drug use (Goldberg 2005; Solinge 1997; Tham 1998). There is, however, also a gradual but apparently increasing acceptance of certain harm re-duction initiatives. Abstinence is still maintained as the primary goal of Swedish drug policy, yet harm reduction initiatives are gaining ground and access to substitution treatment has become easi-er. This development is seen as a success by the SDUU, which has lobbied for further harm reduc-tion initiatives for years (collecting signatures, involvement in public debates, etc.). In a context where harm reduction initiatives apparently gain increased acceptance politically, it has been possi-ble for the SDUU to strengthen its position. Moreover, the SDUU has denounced and complained to the Board of Social Services in Sweden about denigrating treatment in a local treatment centre where drug users received home visits without notice from the treatment programme (in search of tools, etc.). The SDUU won the case, which is interesting because it was the first successful case against a substitution treatment programme in Sweden.
International relations have been important to the SDUU. On the one hand, it has been supported morally from the Danish sister organization. On the other hand, the President of the SDUU actively takes part in cross-national meetings and drug user networks. The SDUU thus also forms part of the network seeking to establish a transnational organization of drug users (INPUD) and participates in harm reduction conferences organized by IHRA, in the Correlation Network, etc.
In Norway, drug user organizations began to emerge in the 1990s, both in relation to the first meth-adone trials in Oslo beginning in 1994 and independently as the Tønsberg Users’ Association in 1999 and the Oslo Association of Users in 2000; the former with support from the Danish organiza-tion. The associations were founded by users, some closely related to the treatment institutions; ex-
isted without funding; were run by only a few individuals; and had only few members (Willersrud & Olsen 2006). Only the independently established organizations had a profile similar to drug user associations in general as discussed above, covering both a political and a social function. The or-ganizations closely connected to treatment institutions were more focused on treatment facilities and possibilities. All these early organizations, whether closely connected to treatment institutions or not, lived only a few years, and in 2004, hardly any activity was going on in any of the organiza-tions (ibid: 93).
In 2004, new drug user organizations emerged, especially related to substitution treatment as LAR-nett, ProLar and Marborg.4 The emergence of these organizations were linked to the drug reform of 2004 where the responsibility for drug users and therapeutic institutions devolved to the ordinary health care system and came under health care legislation; and where the Patient Rights Act was amended to include users of illegal substances in order to strengthen the rights of drug users to treatment, especially substitution treatment (Willersrud & Olsen 2006: 81-82). Instead of clients, drug users became patients with a health problem. At the same time, a rise in the number of drug users in substitution treatment is seen from a few hundred in 1998 to about 4.900 in 2004 (Sirus 2009). As in Sweden, drug policy in Norway has for many years been repressive with no acceptance of harm reduction strategies (Hakkarainen et al. 1996; Hauge 1992). Especially ProLar and Mar-borg are more traditional patients’ organizations that lobby for better treatment and inform about patients’ right to treatment. Members are patients in substitution treatment, relatives, professionals, and others. LARnett, while also closely linked to substitution treatment, is mainly run/entirely run by patients in substitution treatment. These organizations, however, only work for drug users in treatment. As a response to the situation in Norway where drug users are represented in public de-
4 www.larnettnorge.no, www.prolar.no, www.marborg.no.
bates and political bodies by either the organizations for patients in substitutions treatment de-scribed above or the organization for ex-drug users Drug Users’ Interest Organization RIO (Ex-drug users organization) which has claimed to represent the voice of drug users in Norway (for details on RIO, see Willersrud & Olsen 2006), the FHN (Association for Human Drug Policy) emerged in 2006. This association is primarily a political organization for both active drug users and others that lobby for general drug political changes in Norway, moving away from a repressive policy towards a more human – as they call it – drug policy focusing not only on drug users’ rights to treatment and rights in treatment; but also on what kind of treatment should be available; how control policy is practiced; drug users’ rights in the punitive system, etc. FHN is very active in the public debate in Norway and submit statements to law changes. In many ways, FHN lobbies for the same things as the drug user organizations described above. FHN makes active drug users’ voices heard in the po-litical debate in Norway. Only FHN participates in international networks including ENCOD.
The Finnish drug user group Suomen Lumme (SL) (Waterlily of Finland) was established at the end of 2005. Before SL, there had been another user-driven group in Helsinki, but this was very small, short-lived and characteristically a patient organization focused on the quality of substitution treat-ment programmes, not an organization for active users (for details, see Tammi 2006).
SL has about 80 members, of which half are active drug users. The core group consists of about five persons, both clients and peer educators of the needle exchange programme in Helsinki. The goals and activities of SL are somewhat similar to its Nordic sister organizations in Denmark and Swe-den; this is partly due to direct role modelling from the Danish and Swedish organizations that have been an important inspiration for SL. In general, the main goals of SL are to gain more respect and
better treatment of drug users in both public services and elsewhere in society. It aims to give voice to users; to show that drug users are also responsible citizens; to advocate specific harm reducing measures; and to provide fellow drug users with support and advice. SL is explicitly against the legalization of drugs. During its first years, SL was active in public drug policy debates and core activists have given presentations at professional seminars and fairs, as well as media appearances, generating publicity about their work.
The emergence of SL is closely connected to the Needle Exchange Programme (NEP) in Helsinki. A couple of professionals and harm reduction advocates working for the needle exchange pro-gramme had continuously encouraged some of the users – their clients – to set up their own associa-tion. Subsequently, the NEP has offered their facilities for the meetings of SL and involved the us-ers as collaborators in many of their projects and activities; allowing them to participate in the Cor-relation Network where the drug users have had the chance to meet representatives from their Euro-pean sister organizations; and, recently, to work as peer educators for NEP. Also recently, NEP started a new peer education project for which many of their clients have been hired to do street work and share their knowledge on safer injection and educate other users in first aid in case of overdose; in the exchange of clean needles and syringes, and so forth. Most of these peer educators are active in SL and as a consequence of this close cooperation with NEP, SL has now been almost nonoperational for some time, since many prioritize spending their time working for NEP, leaving no time for SL work. This also includes the Vice President of SL, who argues that she can act more effectively as a peer educator than through SL. The needle exchange program has thus given sub-stantial support to SL, but their expansion of activities to include peer education has had an im-portant impact on SL.
The relatively late emergence of a Finnish drug user organization is especially linked to drug preva-lence in Finland. Finland had only minor drug problems up until the 1990s. Until the 1990s, opioid use was virtually non-existent in Finland. In 2005, the number of amphetamine and opiate users was estimated at 14.500 – 19.100. Nearly four fifths used amphetamine and for the great majority of opiate users, the choice of injected substance was buphrenorphine, not heroin, which makes the Finnish drug scene exceptional from other Nordic countries (Rönkä & Virtanen 2009).
Before the end of the 1990s, the Finnish drug policy was mainly law enforcement oriented; minimal attention was given to the treatment of drug abuse until the turn of the millennium, when the debate on including welfare and health policy as part of drug policy opened after the rapid increase in drug use and related harm (see Hakkarainen et al. 2007; Tammi 2005). The strongest disagreements amongst professionals and policy makers concerned harm reduction measures, such as needle ex-change and substitution treatment. Today, these measures are accepted and with the help of these methods, the drug policy also aims at protecting individual and public health. At the same time, however, there are no signs that Finland would concurrently downgrade the repression of drug us-ers: the policy has moved onto a dual track of both increased user repression and increased welfare and health policy (Hakkarainen et al. 2007; Tammi 2007).
Opportunities and challenges for drug user organizations
When looking at these specific traits of drug user organization in the Nordic countries, certain char-acteristics and similarities seem to crystallize. Our suggestion is that from these, it is possible to formulate more general lessons or theses concerning the character, the strengths, and the weakness-es of these organizations. In the following discussion, we seek to pinpoint some of the more general perspectives, which apparently can be drawn from studying the user organizations in the four Nor-
dic countries. First we discuss the importance of drug policy discourses and institutional settings where drug policy is debated and developed; the role of welfare services; drug user organizations’ vulnerabilities and strengths; and lastly, the importance of international networks. The four aspects contextualize the opportunities and challenges that the organizations face. They are not mutually exclusive, but set particular aspects of drug user organizations in perspective.
Drug policy: discourses and institutional settings
Drug user organizations relate to the drug policies existing in their respective countries. To gain legitimacy, the drug user organizations have to inscribe themselves in the debates and understand-ings of drug use that exist. Moreover, they must find openings and spaces where they can have a say. This is to a wide degree defined by the institutional setting of the welfare state, which defines certain spaces and procedures for involving clients and citizens in the processes of decision making.
The dominant views and discourses of drugs and drug policies mean variations between the coun-tries with respect to the maneuvering space for drug users. An important aspect of gaining legitima-cy is how drug users in general are perceived. These perceptions frame the organizations’ possibili-ties to become legitimate actors in the drug field. Even though the UN drug policy system supported by the US represents a repressive drug policy, public health perspectives and alternative perspec-tives, especially like harm reduction, has increasingly merged into international drug policy dis-courses as well as policy bodies. Even though the EU Drugs Strategy does not talk about harm re-duction, it urges a balanced policy between control and health policy (EU 2004); and the EMCDDA (European Monitoring Centre for Drug and Drug Addiction), the advisory body to EU, has devel-oped upon this strategy and launched reports on and prescribed harm reduction in several areas re-
lated to drug use.5 Public health and harm reduction perspectives on drug use are important for drug user organizations, since these ideas and views go hand in hand with what drug user organizations work for. Basically, harm reduction is related to public health policies that focus on health and pre-vention of diseases, not only treatment of diseases (Marlatt 1998); and in that sense, the two per-spectives are related. In general, harm reduction includes a pragmatic view on drugs – that drugs have come to stay in society, and that we therefore must find ways to deal with them as societies, since drug free societies are most likely not going to happen (Marlatt 1998; Inciardi & Harrison 1999; Tammi 2007). Therefore rather than insisting on abstinence, the idea is to reduce the harms of drug use (especially physical, but also social and psychological harms); and to shape social services according to what drug users themselves ask for or need in their everyday life with drugs; especial-ly to reduce the risks and harms of drugs. All Nordic countries but Denmark has a long tradition for a repressive drug policy building on ideas of a drug free society and including only drug free treat-ment as a solution to the problem, beside the punitive system. Until 2004, Denmark has had a more liberal drug control policy and has for long included harm reduction measures as part of drug policy strategies (Asmussen 2008, Asmussen & Dahl 2002). In the other Nordic countries, it has been ex-tremely difficult to even talk about harm reduction; and only recently have harm reduction initia-tives such as substitution treatment, needle exchange or consumption rooms been implemented (Tammi 2005; Solinge 1998). If abstinence is perceived as the only possible solution to the drug problem and drug use is primarily a control issue, it becomes difficult to engage in political pro-cesses as active drug users fighting for rights and recognition of the particular problems and needs that active drug use causes. The case in Norway, where authorities have for a long time seen the ex-drug user organization RIO as the legitimate actor on the drug users’ side (Willersrud & Olsen 2006), goes hand in hand with the dominant perception of drug use in Norway. Both in Norway,
5 www.emcdda.europa.eu/themes/harm-reduction
Finland and Sweden, however, if not harm reduction then a public health perspective has gained increasing legitimacy. Still the repressive drug policy has not changed; rather, drug policy has be-come a dual track policy with repression going hand in hand with welfare and health initiatives. In Denmark, moreover, the shift from liberalism to repression has not affected the health and welfare policy, only the control aspects of drug policy (Asmussen 2008).
In order to be able to participate in drug policy processes as legitimate actors, their lifestyle as ac-tive drug users must somehow be accepted politically. In order to be invited into the policy process, their position as lay experts or user experts must be a legitimate position; their knowledge of prob-lems with drug use and addiction making them able to point to challenges and solutions to drug problems must be recognized as legitimate standpoints. Participation can be in public debates, but also participation in the institutional setting where drug policy is debated and developed. The politi-cal opportunities of drug user organizations are rooted in the ideal and role of the Nordic welfare state. The Nordic countries have long traditions of involving civil organized stakeholders in the welfare system (Anker et al. 2006; Anker 2007). The political structures in the countries include fora and bodies that promote participation of interest organizations in general as well as drug user organizations in particular.
The institutional setting can be defined as both different local and national fora and bodies where drug policy is developed. On a national level, drug policy is debated in parliament and advisory bodies to the government. The drug user organizations studied here seek to gain access to these in-stitutional channels of interest mediation, and to become recognized as actors that are worth taking into account. They do so striving for a certain level of professionalism, yet they also have to balance between developing a professional organization and remaining associations that are run by active
drug users. Several of the drug user organizations have been active in submitting statements to de-bates and introduced bills in parliament that are of importance to drug users. Very often, however, these statements are in minority when it comes to the general opinion on particular drug issues. Other bodies that are of interest for drug user organizations are advisory bodies to local and national authorities. In Denmark, the President of the DDUU was a member of the former Narcotics Board, an advisory body to the government. In Sweden, the SDUU participates in user councils both na-tionally and locally. However, drug user organizations have difficulties in getting through with their views in these fora and bodies. This is experienced not only in the Nordic countries, but also in oth-er European countries (ENCOD 2009). There are exceptions, though, where drug user organizations get their voice heard, as in Sweden where the SDUU filed a complaint with the Board of Social Services and won a case regarding treatment practices; or in Denmark, where the DDUU was invit-ed to participate in the discussions of how to implement heroin treatment. It is, however, in particu-lar issues related to treatment, prevention, or harm reduction where drug user organizations might have a say. The user organizations have had much weaker links to the law enforcement part of the drug policy business – if indeed any; it has been much easier for the drug user organizations to gain a legitimate voice with the social and health services than to challenge the criminal policy practice on drugs as an illegal activity (see also ENCOD 2009). Even though several of the organizations manifestly work to change drug policy in their country, several also downplay this part of their ac-tivities. The reason is that it is much easier to create legitimate relations in policy processes as cli-ents or patients than as perpetrators/offenders demanding depenalization or decriminalization of one’s own behaviour.
The role of welfare services
The Nordic countries have long traditions of developing well-resourced public services, as e.g. pub-lic health care and access to social benefits (Anker et al. 2006; Anker 2007). The public services that the welfare states offer to citizens are meant to prevent extreme and disabling poverty and poor health for all citizens, but also mean that the welfare states conceptualize citizens as patients and clients. In relation to drug users, they become not only deviant or criminal persons but also clients or patients subject to inclusive and empowering services (Asmussen 2003; Willersrud & Olsen 2006). Activist drug users in the Nordic countries can obtain social benefits, i.e. in principle all citi-zens in the Nordic countries have a minimum income to live off.6 And in most cases today, activist drug users can obtain substitution treatment, if not on a maintenance basis, then for shorter or longer periods of time.
Social services aimed at drug users often support drug user organizations by speaking on their be-half; by inviting them to participate in local debates on drug issues; and/or simply by offering the service they do. In all four countries, the user organizations have had strong links to and shared functions with social services and health care. Many organizations emerged out of social welfare services, especially substitution treatment or harm reduction initiatives; or are closely linked to them. The DDUU emerged out of a drop-in centre for drug users; SL in Finland emerged out of a needle exchange program; and several organizations in Norway – although now dissolved – emerged out of methadone treatment clinics. Increasing interest in user perspectives and user partic-ipation in social services in general is seen in all the Nordic countries (Asmussen & Jöhncke 2004); drug users have acted as consultants, advisors, or even board members in the service organizations they are enrolled in. In Denmark, user participation is written into acts on social services and thus illegal not to involve users in social services and treatment offers (Asmussen 2003, 2006); and or-
6 In all Nordic countries citizens have the right to obtain social benefits based on different criteria. These criteria can be related to either unemployment or poor health.
ganizations for marginalized groups in society are encouraged by the Ministry of Social Affairs. In Norway, the inclusion of drug users into the Patient Rights Act and the construction of drug users as patients have made user involvement more acceptable as we see with the establishment of several more patient organizations related to substitution treatment facilities.
Welfare state professionals, most often social workers, have also been important initiators or partic-ipants for the user organizations. In Finland, staff from the needle exchange program encouraged users to establish an organization and introduced the users to the Correlation Network. In Denmark, the DDUU in the very beginning was also encouraged and helped by professionals working in the drop-in centre (Anker 2006).
Welfare services thus play a particular role for drug user activists, both as an economic and health-related basis for living, but also as support of drug user organizations.
Vulnerability and strengths
The third aspect we discuss is the vulnerability and strengths of drug user organizations, both with regard to the fact that associations emerge and dissolve and to the struggles and challenges long-lasting organizations face. Drug user organizations in the Nordic countries have proved themselves to be both tenacious and vulnerable. Many associations are city based rather than national even though they see themselves as working on a national basis. In Sweden, for example, the SDUU have local branches in different cities. However, these turn out to be difficult to maintain. In Den-mark, the DDUU is a national organization, but has difficulties in operating beyond the capital of Copenhagen. An important reason for this is that the organizations are relatively small with only few active members running the organization. Sometimes the whole organization or branch rests
upon one person. StRIS in Denmark is an example of an association whose existence was dependent upon one person for extended periods of time. In Norway, several drug user organizations have emerged and dissolved for the same reason.
In general, drug user organizations are vulnerable and they can appear rather weak, fragmented, and marginalized (Anker et al. 2006). There are a number of reasons for this. Firstly, compared to the general population, the potential number of members is quite small. This means that the recruitment basis is limited and closely connected to the number of drug users and the specific character of drug use. Participants often have limited personal resources due to their struggle to survive under diffi-cult living conditions while also facing different personal problems. Many drug users have periods were they have no extra resources to engage in organizational work because of their drug use, dis-eases, or simply because they must struggle to survive. And lastly, many drug users have periods in and out of prisons which make continues work in a drug user organisation difficult.
Organizational work is thus usually the domain of a small number of active persons. When few people are actively engaged in the organizational activities of associations, it becomes more diffi-cult to establish and sustain democratic procedures and practices and to control the management of assets. This phenomenon has often been experienced in local drug user organizations, where prob-lems have arisen after the withdrawal of charismatic local leaders or when assets have disappeared due to insufficient internal controls and procedures for the management thereof. Local organizations thus occasionally disappear when activists retire or when internal matters make it too difficult to continue.
Both in Sweden and Denmark, the drug user organizations have gained legitimacy as interest organ-izations of drug users. This has also been achieved because the organizations have been able to re-main active, visible and stable organizations for a number of years. Moreover, they have proved able to enter into a constructive dialogue with authorities. In Norway and Finland, however, the organizations have still not achieved sufficient stability to gain this position.
The experiences of the Nordic drug user organizations illustrate the importance of having a leader with some political flair – or with charisma, even – in order to gain political legitimacy. It is proba-bly even more important for drug users to be presentable, since their image in society in general is that they are not to be trusted, liars, thieves, influenced by drugs and therefore not rational, etc. The more stable organizations have had the same leader for a long period of time. In the case of the DDUU, the President has been head of the organization for almost 15 years; in the SDUU, there is also a President who has managed to run the organization for a number of years.
Drug user organizations need resources, both financial and human. In the Nordic countries, the or-ganizations which have achieved public funding are also the ones that have survived. Drug use as a health issue is not sponsored in the same way as cancer, heart disease, or diabetes. Public funding or funding from organizations promoting harm reduction or alternative drug policies are the most like-ly sources of funding for these associations. The DDUU in Denmark has received public funding for many years, covering rent and resources for activities. Moreover, the DDUU has earned money for the organization collecting used syringes in the streets of a neighbourhood in Copenhagen. The SDUU also receives public funding both for the national and the local organizations. SL in Finland has no public funding and here the activists get dispersed in their activities when they are offered to
be hired as peer educators. The organizations in Norway that dissolved did not get any public fund-ing, either.
Lastly, drug user organizations may become more stable if they are related to social services, NGOs, or if social workers are employed. They are, however, also in danger of becoming co-opted into general social services or are restricted in their freedom of action, rather than being autono-mous associations. In Sweden, the SDUU decided to move from RTHLs premises because of limi-tations; in Finland, the majority of activists in SL focus on peer education rather than activism in SL.
International networks – international role models
Finally, we discuss the importance of international relations, not only for international organizations that work in favour of drug user associations or act as umbrella organizations, but also the contact between drug user organizations as seen in the Nordic countries.
In the Nordic countries, drug user organizations have emerged with support from each other as well as from participating in international networks. The Danish organization has supported both the association in Sweden and its now dissolved Norwegian counterpart. The Danish organization itself, on the other hand, has been inspired by Dutch drug user associations and gained a lot of inspiration in building up the organization from them (Anker 2006). Many of the associations are members of different international NGOs or networks that work for drug users’ rights and recognition, such as NAMA, INPUD or ENCOD. Many also meet at the annual Harm Reduction Conferences organized by IHRA. The local and national drug user organizations both know about each other through these networks, but they also foster personal relations and work together in these networks. Both DDUU
and SDUU have been active in establishing and maintaining INPUD. In 2008, DDUU hosted an international conference for drug user activists where further development of INPUD was also dis-cussed. INPUD is the umbrella organization that tries to speak with one voice for all drug user or-ganizations in the world and hence make that voice more strongly heard in international contexts.
The relation between the harm reduction movement and drug user organizations is not only present in that they have similar perspectives on drug political developments, but also due to the fact that IHRA (International Harm Reduction Association) has financially supported the emergence of INPUD, providing scholarships for drug user activists in order for them to be present at the harm reduction conferences.
The political developments have also created more formal international bodies that many drug user organizations take part in to be involved in drug policy debates and decisions. The Correlation Net-work is one such body which SL in Finland was almost immediately linked to after their emer-gence. The DDUU and SDUU have also participated in this network.
Drug user organizations in the Nordic countries thus both support and find support in international networks, actively participating in them as well.
With a point of departure in empirical research on drug user organizations in the Nordic countries we have discussed the emergence, histories and trajectories of these organizations in relation to gaining legitimacy as actors in the drug field and becoming stable organizations. We have analyzed how drug user organizations in the Nordic countries operate under similar conditions as other drug
user organizations in other parts of the world. Everywhere drug user organizations are faced with the fact that only few citizens are drug users and hence potential members; that the national drug policy discourse and institutional setting is important for their possibility to participate in drug poli-cy debates and become legitimate actors in the drug field; that funding, charismatic leaders, and support from other actors in the drug field make these organizations more stable and effective; and that today, drug user organizations can find if not local or national, then support in international networks and organizations. Drug user organizations in the Nordic welfare states also operate under particular conditions. Here there is a long tradition for involving civil organized stakeholders in the welfare system; there are social benefits to citizens that are not able to support themselves; and many such elements.
Our aim has been to further widen the knowledge of drug user organizations by comparing organi-zations in four different, but also similar countries; the Nordic welfare states. In general, these asso-ciations have become legitimate partners in different ways in each of their countries. However, the organizations also differ in that there are both fairly old and stable drug user organizations; organi-zations that have emerged and dissolved; and young organizations whose existence – short or long – is difficult to predict. The conditions discussed above, both general and specific, does not make it possible for us to say something definite about drug user organizations, their history, trajectories, and successes; nor does it provide fulfilling answers to why differences between the organizations exists. Even though it is possible to say that for example drug user organizations in Norway emerg-ing in the late 1990s had difficulties in surviving because of lack of a charismatic leader, financial funding, difficulties in getting substitution treatment, and the fact that acceptance of public health or harm reduction perspectives was only dawning at that time in Norway, this does not suggest that other organizations could not survive under the same conditions. Moreover, why is it that the Swe-
dish organization can establish local branches (though with difficulties) in Sweden, and that the Danish organization cannot? They both have a charismatic leader, they both get funding, and they both support and find support in international networks. One answer could be that the Swedish or-ganization has a lot to work for in relation to implementation of substitution treatment and harm reduction measures. In Denmark with its longer tradition of harm reduction services it is not urgent in the same manner. But that would just be one perspective. So what we have done is to pinpoint some important conditions that further the emergence and existence of drug user organizations and their possibilities of becoming legitimate actors; yet we do not claim to be able to tell the whole story.
What we do want to emphasize and what has become apparent in our analysis is how drug user or-ganizations in the Nordic countries have simultaneously emerged from and today find legitimacy and support in both national and international harm reduction discourses and networks. Drug user organizations are thus to be treated as part of a larger drug policy reform movement intertwined around the idea of harm reduction, not only as independent user movements. This movement is based on public health perspectives and if harm reduction is not accepted in drug policy fora then public health is discussed in relation to drug use. Due to public health perspectives, even in coun-tries with traditions for repressive drug policies such as Sweden, Norway and Finland, drug policy has become a dual track policy with repression going hand in hand with welfare and health initia-tives. Furthermore, when drug user movements are conceptualized this way, they become manifest-ed as mutual help and as civil rights movements that aim at reducing the harms drug users experi-ence not only or primarily from drug use but vis-à-vis societal injustice based on paternalistic and exclusive drug policies. They become change agents belonging to a larger drug policy reform movement.
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