SECTION 5 STIGMATISATION AND SOCIETAL REACTION: EDUCATION AND POLICY IMPLICATIONS

Illegality:

One of the things I am convinced of with drugs is that they are artificially expensive. If it was legal to grow one's own poppies or produce one's own heroin, or someone to produce heroin for the general population, I think that the drug would be a lot cheaper and I think that with my use of it and that of friends who are users and knowing people who have used for a long time ...I think of the social problems that have come about with heroin use, sort of, you know people turn into scum, start stealing and go to gaol and horrible things like that - it comes about because the drug is illegal.

If I'd had something, I wouldn't go out. I would sort, of, stay at home.

The supervisor rang me up one Friday evening-saying that, you know, there have been complaints ... she started telling me all these things ... like the women didn't want B. and I to put our mugs in the same cupboard as theirs.... They had been wiping the chairs and the desks as soon as we got up and walked out of the room ... they would wipe it down with methylated spirits and changing chairs around and they didn't want to sit on the chairs that we had sat on.... God!

You have got all these taboos put on you by society about using needles ...I mean, I have had drugs before ... if you are lied to by society when you are younger, I mean, they tell you about the tooth fairy and santa claus exists, and then you find out they don't so why should you believe them again? ...it's the same right through ... if you smoke marijuana you are going to become a heroin addict.... If you smoke dope and you are not suddenly a heroin addict ... so you are not going to stop doing it...

Once people know that you stick needles into yourself - well, you are looked at totally different ... it can also lead to prejudices against you....

You've got the people who go to church and the people who don't go to church. And the people who don't go to church have wild parties, and the people who do also have wild parties ... but the people who don't go to church also tend to get into the drug scene ... it's almost a complete demarcation ... everything else crosses the boundaries ... like, you get your sluts on both sides of the fence!

The illegality, and society's attitudes towards heroin use is disgraceful ...I think the way people who use heroin have been treated ... you could liken it to the way the Nazi's treated the Jews ... its real victimisation, you know.

People say they care more than they actually do-it's in their head that they don't like it....' I really care about you and don't want you to get hooked'...but it's not that ... it's that they don't like it - its a stigma.

Perhaps the single most significant issue with which the policy maker must grapple arising from this research is the question of the illegality of injecting drug use. All participants in our study are affected by the illicit nature of their activity as were the researchers trying to access such groups.   Illegality does not only affect directly our respondents in the sense that they fear encounters with the law and its enforcement agencies: the police, courts and prisons. It produces secondary consequences in that choices regarding the conditions under which drugs are procured and consumed are not free but constrained by the law's tentacles.   Moreover, it is not simply the law which users fear. There is a deep cultural bias widespread through the community against the illicit drug use which affects our participants' families, friends and partners, their relations at work and in the community. Whatever the ideologies of deviance disavowal evidenced in the data--that their activities are legitimate, a private choice, not worthy of societal opprobrium--our respondents' ideals are constructed, at least partially, by the illicit nature of their activities and the stigmatisation with which they are associated. Normality, for them, presupposes that at least in certain aspects of their lives they must merely pass as normal, fearing social disclosure, marginalisation and delegitimation.

We need single out only a few consequences which illegality fosters. Commodified consumption activities for most are not associated with a legally imposed reduction in supply. As any economist knows, supply restrictions force up the price, leaving our users dependent not simply on artificially inflated prices for their commodities but on contaminated supplies, often dubious business practices and the ever-ready presence of the law enforcement officer interrupting the economic exchange. Whilst the trend is in a deregulatory direction in other areas of the economy, for our users pressure is in the other direction: more government controls, harsher penalties and moralisms, all premised on the illusory goal of stamping out drugs from our community.

As one of our respondents put it:   'prohibition didn't work in America'. It is unlikely to do so here. If the illegal product is meeting a genuine demand in the market place that demand will be satisfied - but at some considerable cost. The cost is not only the cost to the user's pocket, they are often suffering from financial difficulties, adversely affected by supply interruptions or a lack of quality control--it also affects profoundly the user's psyche. Stigmatisation has an uncanny tendency to be internalised, affecting self image, motivation and disrupting normal social relationships. More profoundly, it skews the conditions under which injecting occurs such that unsafe using becomes more likely. It dictates the place of use, the culture of use, as well as reinforcing the very rituals which produce unsafe using. When coupled with what respondents see as the profound hypocrisy structuring their covert activities, it works to delegitimise the accurate messages about unsafe using and sexual practice emanating from responsible bodies. The social costs of illicit drug use (ignoring for a moment those of licit drug use) are also not insignificant. The financial costs of policing the drug trade and consumption activities are enormous, nor to mention the costs of the drug treatment industry, the loss to corporations and individuals affected by drug related criminal activity, as well as the burden on the public purse produced by those not in the paid work force.

Most of our sample is not a burden on the public purse and many will never be so, unless they contract the HIV virus. It is the issue of HIV transmission which renders a fundamental reappraisal of drugs policy so urgent.

Illegality prohibits the transmission of honest, scientifically accurate, explicit information about drugs and safe drug use. It leads to difficulties of access to clean needle supplies, unsafe disposal thereof and consumption sometimes in unsafe conditions.   It adds to the allure of the very practice that drug educational campaigns are trying to minimise. It inhibits those who need and seek help and it deprives users of the social and moral support from friends, families and colleagues.   It leads to counterproductive educational messages being transmitted in schools--precisely the most urgent locale for AIDS education, given the age at which drugs and sexual practice is initiated. As Wodak et al. (1991) have so cogently argued, regulated availability is long overdue.

The argument for decriminalisation does not underestimate the magnitude of the problems of those whose lives have been rendered difficult by easy access to drugs, whether licit or illicit.   It rather argues that a precondition for tackling these problems is an alteration of the law such that appropriate bodies, not least the community, have only to deal with the phenomenon of primary deviance, not secondary deviance. Drug abuse, and not drug ingestion, is the problem. This is the single most important challenge facing AIDS prevention workers and one which will require action on multiple fronts.

For such a major change to occur the community needs to be the target of very different kinds of educational campaigns regarding drugs than it has been exposed to so far. Numerous vested interests are at stake with diverse groups thriving on anti-drugs ideologies and the moral capital which such anti-drugs themes reinforce. We cannot stress too much the need for an alliance between sympathetic drugs experts, civil libertarians, AIDS educators and community activists, and educators who are aware of the social mediation of drug use and the irreversibility of its practice. That drug use should be practiced safely is a sine qua non of effective AIDS prevention policy and adequate education.

Entry to Treatment:

I did have treatment once, but I would never ever do that again.... I don't like their methods.

I've been through periods of 3 to 3-1/2 years without using anything.... I probably will stop very shortly; maybe it will be for six months or so.   I'm probably not enjoying it as much as I used to ... I'm a user, not a junkie because I won't shoot up pills or vegemite...they are really anxious to have a hit ... they still share, people who are really desperate-they would steal, rob or whatever. I keep thinking perhaps I've got a habit again.

Once or twice I've thought - hang on - you are using a bit too much - give it a break - maybe a couple of days in a row, but previously, that might have meant two weeks without any-I've always thought, slow down, because its very addictive and you have got to be extremely careful.

It's not a problem with me ...I just worry about it.   I don't use enough for it to be a problem. There is no treatment for someone of my level of use ... To desire treatment would be to say that I have got a problem, you know, and you can convince yourself that you've got a problem.

I didn't like their methods ... I think their methods have changed somewhat .... They'd wake you up at 3 o'clock in the morning and present you with, you know, a bucket of paint, a paint brush, and say: right, paint that hallway, that chapel or that fence or whatever, you know, and I didn't like the way they, they'd have screaming sessions...

I went to F. and then I was high jacked from [there] to the farm down near K. and I woke up down there and I didn't know where I was and they'd bombed me out for about five days.... Well, I went to - voluntarily, and when I woke up I was on the farm - and like I said, they had bombed me out.... I was bombed out and I really mean bombed out. You'd wake up and sort of lift your head up off the pillow and they'd throw a few more pills in your throat and.... So I was like that for four days and then when I woke up and they decided it was time for me to wake up.... Then I had to have someone constantly with me in case I went into a fit or something like that... you'd have a shadow for 7 days, someone was with you constantly, you know, they did everything with you and then after 7 days they thought: OK, well this person's not going to sleaze out or this person's not going to walk out or this person's not going to do anything wrong. Then they'd take the shadow off you and as soon as they took the shadow off me I started plotting and planning as to how I was going to get off this place and get back to Sydney ... they did stupid things like, you know, you'd become friendly with someone and when I was there there was something like x people there and you'd start to make friends with someone-the superior, the supervisors or whatever they call themselves began to notice that you were spending time with someone.... Then they split up the group and you couldn't just sit and meditate or anything like this because they would then accuse you of doing headmiles (?) and... you'd get some kind of punishment for doing that....   I don't believe I'm in such a state that I need to have these people treating me like that.... [I'd rather go] cold turkey... it's difficult but it's only difficult for 4 or 5 days and then each day becomes better... 1 prefer to do it that way than have people telling me that I have to do this or I have to do that.. you must do this, and this is your next step, and maybe it works for everyone else but I don't think it works for me, so that's why I would never, I would never even consider going anywhere for treatment.

Although the majority of the sample were not in contact with drug treatment agencies and had had no history of treatment, one third of respondents had, at some stage in their using careers, undergone periods or a period of drug treatment. Some, when describing their history with drugs, recounted self imposed periods of abstinence. This might have been brought on by a recognition that they had problems with drugs or in their lives generally, drugs being a perceived aggravation. Some had left town or gone interstate for a period to enforce a break with problematic drug using patterns or with a circle of friends and acquaintances who were seen to be too into drugs. A number spoke of the difficulty of coming off drugs if all one's friends were users or if one were involved with a partner who was a user. Some spoke of themselves as junkies, as having 'a habit', being 'sick', being addicted ... or having a dependency.   A small minority claimed that their lives had been 'fucked up' by drugs. Certainly, the sample included a number of people who were suffering from serious drug related financial problems, or had lost friends and partners as a result of their drug taking or had lost jobs. Others admitted to trying to establish controlled rules of use but being unable to carry them through. Seven of the sample confessed in interview to drug related problems which they feared were getting out of hand. Of these, five seemed to be on the verge of defining themselves as in need of drug treatment, and contemplating help seeking of various kinds.

A significant dividing line between this minority experiencing difficulties and the majority of functional users concerns the question of whether they were injecting alone, or socially with others. Those experiencing problems were much more likely to be scoring alone, and frequently injecting alone. This often happened immediately after obtaining the drugs, and in situations such as in toilets, in cars, in alleys, in order to avoid prolonging withdrawal agonies, or to relieve depression or enable them to cope.   This group was far more likely to report occasions when they were feeling very sick or cite examples when an intention to refrain from drug use had been broken. The discussion above concerning stigmatisation and secondary deviance throws light on some of the negative effects of the stigma associated with injecting drug on the processes of help seeking. The ambivalence associated with the drug taking and the perceived need for treatment combines with a frequently stated lack of confidence that drug treatment will be helpful. This perception was confirmed by some of those who had already had bouts of treatment. Several of the sample had been on methadone therapy or had experienced several days or weeks in full-time treatment in drug clinics--to dry out. Only one spoke of this experience as helpful. Others complained of the poor range of available treatment regimes, their geographical inaccessibility, the anti-drug treatment ideologies and the lack of individualised counselling opportunities. Others rejected the view that it was their drug taking as such which was the issue. Rather, it was their lack of employment, their accommodation or money problems, their social loneliness at home or in work which was the real problem--albeit aggravated by drugs. They really needed other kinds of help.

What characterised all of the sample, however, was their refusal to blame injecting drug taking as such as the prime cause of any difficulties they may have been experiencing.   Most reject the view that there is any inherent difference between taking alcohol or tobacco, or other modes of drug ingestion such as snorting, or injecting. As we have discussed, there is a strong critique of societal hypocrisy and double standards coming through the interview material. Most reject the prevailing stereotype of the typical career of the user as necessarily ending up in skidrow. And yet there is an acute sense of stigma which may also be related to the respondents' perceptions to the likely consequence of seeking drug treatment. One will have to take on the identity as sick junkie which, we have already seen is in the main rejected, albeit ambivalently, even by those who seem to be on the verge of entry into treatment. Such a transition threatens disclosure of one's deviant identity which most of those experiencing problems seem anxious to avoid. Many users take great pains to avoid others' knowing that they are users, keeping it from work colleagues, from housemates, family members and even in some instances, from sexual partners.

The implication of this discussion for AIDS policy makers concerns the appropriateness of the range of provision for drug counselling and treatment. Being in regular contact with treatment centres is more likely to put users in touch with information sources both as regards safe using practices and with respect to other transmission issues, especially those concerning sexual practice. But such treatment agencies need to be sensitive about the social mediation of drug using practices and not unwittingly add to the stigmatisation surrounding injecting drug use. As one of the respondents put it eloquently:

I think there should be some sort of concerted effort to destigmatise injection. A prime example would be [a certain clinic]. It was supposed to have an HIV prevention focus but the message that uniformly came across massively was 'injecting is bad! don't do it'. It wasn't: 'inject safely'. It was: 'don't inject'...it has been stigmatised enough. What you need to do is to make it possible for it to become safe and not to recriminate.... I think its a subtle form of disempowerment to go on and on about how injecting is filthy ... there has to be ways and means found of bringing that group into greater visibility as opposed to stigmatising injecting.

To the extent to which drug treatment agencies transmit anti-drug and anti-injection messages in their treatment regimes, many users will continue to be deterred from help seeking, even when they themselves believe they need help. Not seeking help when one is sick or having a habit may add to the likelihood that unsafe practices will occur. It also deprives users of access to more reliable information about HIV transmission processes, especially as regards sexuality and sexual practices.

Identity and community:

What strikes the analyst most about the respondents is their variety. The only two things they all share in common are their injecting drug use and the experience of the stigma associated with injecting drug use. Apart from that there is considerable variation regarding social background, family and occupational histories, sexual preferences and practices, general world views and aspirations. So, too, is there considerable variety both in their general drug histories and in the social meanings of their current drug usage and preferences. Some display symptoms of dissatisfaction with their drug use, indicating a desire to undertake treatment because of fears about having or acquiring a habit. Others claim no desire to alter their pattern of drug use claiming that they enjoy taking drugs, have no drug related problems, and can sustain their habit financially through regular employment or from involvement in petty dealing. Many show few signs of personally internalising the anti-drug ethos they all see as existing in the wider society. Even with different injectors of the same drug there is variety concerning the perceived effects, its satisfactions and motives for its use. Apart from this variety, there is one other common feature in all the respondents which relates to the issue of stigma, discussed above. All of them define junkies, the addict, the drug dependent in negative terms, even those who admit to being a junkie themselves. Most, however, as we have seen reject the junkie label for themselves, applying it only to those whose lives are seen as having been taken over by drugs, who are no longer seen as capable of acting responsibly.

We have discussed above the question of the need to build upon the theme of responsibility in future educational interventions. This needs to be brought about with care, however, to avoid further stigmatising those who do conform to the junkie stereotype and who are not exercising the same degree of control over their drug use as those more functional in the sample. There is much need for all drug injectors to act responsibly about their drug and sexual practices, regardless of whether the user has a self definition of a junkie or not. A number of respondents in the sample stress the element of choice as a factor in their own and others' lives. People choose to take on particular life styles, no one is forced to live their lives in particular ways, even those who have acquired the junkie status. As one respondent put it: 'No one is forced to be a junkie. You have to work very hard to be a junkie ... you choose to be it.'

Given the variety within the sample, perhaps this in itself provides a basis for building a firmer educational strategy; one which stresses the variety, drawing upon it both to normalise the drug user and yet to stress the common need for responsible drug use and sexual practices across other boundaries of difference. Such a strategy could stress that although there might be other issues that divide or distinguish the drug users from each other--and from non users--the virus doesn't distinguish and will take advantage of lapses, whoever commits them.

There is, however, another aspect of the data which could be built upon more--friendship.

Friends as Conduits of Information:

Being in gay circles, too, I'd been accessed to a lot of information... One of my main things I want to do is to start up a gay access centre.... Out this way, there's nothing....

Being careful was just a peer group pressure thing.

It was in my flat and I was with a couple of guys and lesbians. They were talking about amphetamines ...I said yes, I want some too. They said no ...I said why ... because you have to inject it. 1 said yes, well, that's all right, you're a nurse, you can inject me. She said no - you're only 16 1/2, blah blah...

During the next couple of weeks I thought, well, I would like to try some ... the next time he had it, it happened to be smack and he said ... if you're going to inject, this is how we do it. And he just went into the ritual and which I guess I didn't pay a lot of attention to like the mixing up and that sort of thing but from word go it was, like, you recap your own needle, sort of, clean up your own stuff, even though he was injecting me ... he didn't explain to me the reason why he established a ritual means that if he is going to have to top up and he is not really with it he is going to do these things by habit anyway and that's the biggest risk for safe using is if you are a bit out of it already and you think she'll be right mate ... and so that doesn't happen because it becomes an automatic response.

The New Public Health which stresses active community participation in the determination of health needs and in health education has, rightly, devoted considerable attention to ways in which communities can be identified and strengthened. The gay community's role in developing imaginative community based strategies to change sexual practices is a model of what would be desirable for injecting drug users. Recently, however, it has become obvious that attachment to gay community organisations and information networks is unequal, with class, ethnic, locality and gender differences playing an important roles. Our sample includes a few who have community attachments to the gay community and AIDS organisations. Several are paid employees in community organisations, one or two provide evidence of attempts to build up incipient community structures to meet their needs, but most have no community attachments, at least around drug issues. Whilst we have stressed the way in which drug using takes place frequently in subcultures, not necessarily centring around drug taking, there is tittle evidence that such subcultures are joined to broader structures of community affiliation.

Furthermore, most in our sample have non using friends and are involved in overlapping subcultures, their shape being less coherent and integrated than has been shown to be the case in other cities overseas. The geographical location of our sample addresses rather indicates small pockets of friendship networks, dotted all over Sydney, whose interconnections are, in terms of face-to-face encounters, minimal. Only networks of dealers connect them but these are often invisible to most users, given resort to pagers, coded phone messages, secret meeting places, etc.

Although as we have seen respondents stress the need to be responsible for themselves, and this has been strengthened in early campaigns targeted at the user, it should not be assumed that this is the only thing which will motivate the user. We have commented above on the way in which those who are HIV positive exercise more care in their drug and sexual practices. This indicates that this altruism is an aspect which could be accentuated in an educational strategy. Although there is much negative comment in the data about junkies who 'don't give a damn' about others, most of the sample clearly value their friends, and some of them have strong attachments still to family. Others will explain away apparently irresponsible behaviour such as robbing to acquire money for drugs or not calling ambulances for someone who has overdosed. Such acts can be exonerated because of the absurdly high price of drugs, forcing the user into illegality or inhibiting the proper thing to do for fear of sanctions from law enforcement officers. If responsibility to others were stressed more, it might have the effect of helping to strengthen the incipient sense of community already apparent in some of the respondents. This sense of a community marginalised and oppressed by societal attitudes, is impeded from issuing in active community involvement in community education campaigns such as has emerged in the gay identified community. However, some lessons can be drawn from the latter's history. The growing acceptability of homosexuality resulted from a simultaneous twofold set of processes: on the one hand organisation and pressures for a normalisation of gay sexual preferences from among the gay community itself, and this occurring side by side with significant public pressure on the part of some heterosexual opinion leaders for a change in community attitudes and legal definitions of what is or is not acceptable behaviour.

We doubt whether the deep cultural taboo against injecting drug use is any less strong than that which existed against homosexuality fifty years ago. This reiterates the need for an educational strategy aimed at the general public about drug use discussed earlier.    If the key aspect of the identity of the user is as someone stigmatised, this militates against a more open discussion of drugs, their benefits and harmful aspects surrounding their use.

Safe Using :

It should be legal, you know.

I had only been snorting speed with a particular group before but I ended up with this different group who were doing coke and heroin ... all had pretty good jobs and were using on weekends ...I just didn't understand that it would be nice ...I felt fine ... they used a clean fit for me. I thought if I'm going to have drugs I am going to do it this way from now on. It's the charge, you know.

It's not harmful at all, you know, if you look after yourself.

Our discussion of rules and planning behaviour recognises that most in our sample are already engaged in risk reduction behaviour, especially with respect to their drug use. Ideologically, however, the concepts both of harm minimisation and risk reduction when targeting drug users in educational campaigns runs the risk of counterproductive effects. This is because of the stigmatisation attached to injecting drug use per se, whether safe or unsafe. Harm reduction and the construction of a hierarchy of risks with respect to drug use: that abstinence is better than taking any drugs, that snorting or swallowing is better than injection, etc, may objectively highlight the degree of risk involved in different patterns of drug use. However, if it has the result of stigmatising the injecting user and delegitimating his/her own knowledge regarding the satisfactions of safe using it is likely to be less effective.

Both harm minimisation and risk reduction are concepts suffuse with negativity. The concept of safe sex has the simplicity that both safety and sex are positively evaluated. The long term strategy with respect to Drugs and AIDS would be to develop cultural symbols of SAFE using - or its equivalent - which does not imply that using per se is productive of harm. Overeating is' health risk behaviour but no one has even suggested food should be avoided, and where it is, it can become a life threatening pathology. We do not underestimate the difficulties of bringing about this change. It will require more than sensitively developed public health campaigns to do so.

I n conclusion and returning to the question of the preconditions for functional injecting drug use discussed at the outset of this study we need to emphasise a central issue not within the competence of AIDS prevention organisations to address. This concerns the correlates of functionality such as viable employment, adequate housing and the economic wherewithal for full participation in adult society. To the extent to which these conditions are unavailable, drug use as part of the informal economy will thrive. Supply-side fixation on drug trafficking, moral panics and law and order campaigns neglect to address what are the features of our society which give injecting drug use its saliency.

Reference:

Wodak, A. (1991). To take up arms against a sea of drugs: AIDS injecting drug users and drug policy. Paper presented to The Australian Academy of Science. 3 May 1991.