WHY SHOULD DRUG USERS SELF-ORGANISE?

by Andria Efthimiou-Mordaunt

For the benefit of the 'professionals' who may read this it may be that this question is crucial to answer if you are genuine about encouraging drug users to organise around their needs/rights.

Before I get going I need to define my terms of reference, for example who is a drug user? A drug user is any man, woman or child who has had a history of drug-dependency whether they have ever used a drugs service or not. I am not referring to drug users who simply smoke a little pot every week or take 'E' now and then. I am talking about people whose lives have been radically changed by the experience of using, in as much as they have lost a lot: friends, family, money, lovers, children (in some cases) to social services, the right to good housing education and employment.

My main motivation for doing this work comes from the enormous loss of lives I have personally experienced, and within the community in general. A drug user over the age of 30 is a privileged soul indeed these days. That is if they haven't already died from an overdose, AIDS, Hepatitis or Septicaemia, or ended up doing time. And it is with them I propose that we try to organise, making inroads into further humanising drug treatment facilities. And for those of us who are not imprisoned, and are alive and kicking, that we stay that way.

Recently the Government's Effectiveness Review harps on a lot about users rights, user involvement and the word advocacy comes up from time to time also. In other fields, and I cite the mental health field as a good example, advocates are paid people who appear to be non-medical, although highly knowledgeable in their chosen fields who have a part to play in lobbying for better services for their counterparts who may still be undergoing great stress due to their 'condition' or 'illness' . In the drugs field this could mean anything from going along with a client to their HIV-clinic, to speaking on their behalf to their doctor who doesn't appear to be adequately explaining the treatment that is being doled out, to fighting hard for the decriminalisation of drugs.

Two significant points about advocates in the drugs field: these people are mostly not paid yet, (or paid quite badly) , and neither have they been seen to be necessary by most workers till Effectiveness Review in most parts of the country. Excuse us if we don't all immediately jump on the 'drug user consultation' bandwagon. We are finding it a little difficult to know who is actually interested in this. The fact remains that before HIV very few drugs workers, whether in the voluntary or statutory sector were in the slightest bit interested in hearing what we had to say about legislation, drugs services or anything else for that matter. But there have of course been a few researchers, policy makers and service providers who have wanted to hear our views for some years. So thank you to them.

Speaking for myself, the sense of 'I have the right' was something I never felt whilst I was using. And my guess is that other drug users feel the same way. That users feel disillusioned and untrusting should come as no surprise to workers in the field. Let me list a few reasons why:-

We think we are being tokenised and not taken seriously, and anyway we know that whatever we say is probably not going to make any difference in a fragile health service which has less and less resources for drug users (and many other 'patient' groups for that matter).

It means collaborating with workers who have seen us at our worst and it's cringe-making to say the least.

We do not get paid for the most part, and this is simply not fair.

In some cases we are not skilled and knowledgeable enough to be able to communicate on an equal level with most of our 'professional' allies. We need training and we are not going to get it being used as volunteers in the drugs field. But before training the priority must be learning leading to qualifications - education!

In 1987, fresh out of rehab', and pretty naive to say the least, I joined an ex-user support group. Within it I met Steve who became a very close friend. I was already a relief working in rehabs' and he knew I'd taken a particular interest in the HIV issue. So he told me how terrified he was that he might be HIV positive, and I did the best I could supporting him by going with him for a test and then coming to terms with the fact that he was HIV positive and symptomatic. This inspired my initial enthusiasm for drugs/AIDS work. And let's face it for most drug users there was no such thing as speaking up for yourself until AIDS, when suddenly it became important for service providers to liaise with us.

One of the things I find intensely frustrating about this work is the number of times I get roped into fighting on behalf of a fellow addict for the right quantity script, or some other basic medical necessity that should make one's life at least bearable. For me this is a waste of our time as advocates and should be the job of front-line drugs workers; we have more than enough to do educating each other about what our rights are in the first place. I'll say that again. We have enough of a job to do educating each other about what our rights are in the first place. Shocking though it may seem to many of us, most drug users I advocate for appear stunned when I put it to them that they might have the right to education, a job, or anything for that matter.

I have a drug-using friend in the north of England who constantly refers to me (tongue in cheek, though it may be) as a liberal, a counsellor; you know the sort. He is without a doubt one of the most disillusioned individuals from the community I have ever met. He has used (like myself) since the 1970's and has fought hard for adequate services for drug users, both when drug-free and also when using. But as for drug users rights...he doesn't believe drug users will organise. And if they do, what safeguards would there be for them? How on earth can illicit drug-users be seen to be self-organising, even if it were possible for the occupational hazards of 'scoring' not to make us undependable. For many of us it is intensely shaming to be 'out' because of the entrenched views most people have about drug users. In my experience, most of the reliable activists are 'out of the closet' committed individuals who have regular scripts, and/or ex-users. They can afford to be, as they don't live in constant fear of arrest.

However, I would like to say it may not actually be necessary for all of us to be 'out of the closet'. Gay men, for example, achieved a lot in serious positions of power because they remained closeted. I don't think this should always remain so, but it depends on your particular position as an activist in the community. If you are a doctor or some other kind of 'pro' it's clearly in your interest to stay closeted, at least for a while! Coming from an AIDS activist background and seeing the incredible inroads gay men achieved through self-identifying I know there is some value in it. But I do advocate that people who are thinking of 'coming out' to think long and hard about it. It's not so much the law as the emotional repercussions of being exposed.

In relation to organising street drug users one process that has worked well is by making initial contact on the street using newsletters on primary health care, HIV prevention & advertisements about drug services, and getting drug users to contribute to a newsletter with suggestions or articles. This is also an excellent peer education tool and has also been a successful health education tool.

In the UK a London-based organisation called the Drug Users Rights Forum (DURF) has been in operation for 19 months. It is a loose coalition of drug users, ex-users, researchers and front-line workers mainly from the drugs field but one or two also from the mental health field. The membership, which comes from as far a field as Scotland and Ireland, includes people based in AIDS projects where their priorities are more to do with peer education, especially with a view to HIV and Hepatitis prevention. And some are based in drugs projects where the priorities are more to do with prescribing legal substitute drugs.

One of the issues that DURF lobbied around was the pilot program of prescribing heroin (200 ml ceiling), plus methadone, at the Chelsea and Westminster Drug Dependency Unit. A few opiate dependants there were saying that the ceiling was too low, and they needed more. In the final analysis they moved onto private doctors, and the consultant we lobbied eventually admitted that the reason the clinic couldn't prescribe more heroin was because it would cost too much. But a fascinating aspect of this issue for me was that even ex-users (some of whom hadn't used for years) supported this effort because heroin is less addictive, and safer than methadone. This is not to promote heroin for all opiate dependants, but clearly for some it has been the answer to having a life, a job and a family, and generally contributing positively to society. We recently discovered that the reason that heroin is effectively more expensive than methadone is that there is only one manufacturer, and one distributor - which is not the same with other drugs.

As I had seen so many drug user organisations fall down within a year of starting due to lack of administrative and financial support, I cautioned DURF not to go full steam ahead with big campaigns until this was dealt with. The good news is that SCODA are now working with DURF to help raise funds and to begin some pragmatic strategy development. Despite these achievements the fact remains that until drug users stop being criminalised the circumstances of their lives will always be in the balance. My hope is that DURF will be part of the leadership in the struggle to decriminalise drugs, and therefore us as a community. Since when did punishing people with a 'medical condition', ie addiction, ever help them get well? In addition the amount of public funds which could be diverted from pointless arrests into a more compassionate and pragmatic approach to drug use would be enormous. Something to think about is that decriminalising or legalising a drug doesn't mean you cannot campaign against it. Look at health education campaigns around alcohol and tobacco. In the UK, smoking is banned in many work environments and the numbers of smokers have gone down. A recent television phone-in programme which Release's director Mike Goodman was involved with voted 52 per cent in favour of legalising all drugs and 48 per cent against. Perhaps the tide is slowly turning.

Andria Efthimiou-Mordaunt is the chair of the John Mordaunt Trust.