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Why are we Failing Women Who Use Drugs? This was written and presented by Erin O'Mara for the Greater London Alcohol and Drugs Alliance (GLADA) Improving the Options for Women conference January 2005. An edited version appeared in Black poppy Issue 10. Here is the full text.
I am both pleased and anxious about being asked to be here today. I am certainly pleased to be standing in front of a room of people who are interested in, and hopefully dedicated to, taking the issues and concerns of drug using women to higher places on their agendas. Pleased to be here to begin consolidating our focus, creating new vehicles for implementing such needed changes in the way women and services engage and interact. But
I have to admit I was anxious as well. As a drug using woman myself
of many years I can acutely feel, when I stand here today and
look back, the desperate and wide-ranging needs of a group of
women that so often get sidelined, quietly shuffled to the edges
after the latest batch of recommendations are left lying crumpled
and unused in the 'too hard' basket. But I'm not here to lay blame
at doors. On closer inspection my own anxieties reveal a little
more than is personally comfortable as I realize that my own community
may have also let women drug users down, that we can also be accused
off placing the token woman on the latest board, to deal with
'women's issues' that soon appear to be just too vast and too
hard. For me, its like looking into the face of a trauma victim,
who walks around the hospitals halls, dazed and confused, a distant
partner in her treatment and care plan…. These recommendations
that we put down today have got to be carried forward but carried
forward on the voices of the women involved. Women, young women,
mothers, older women, refugees, women from ethnic minority, black
women., As the drug using landscape alters rapidly, as violence
escalates and international gangs gain footholds and women fill
our prisons, women specific issues are being buried even deeper
under various cultural and social pressures. Women who's voices
are so silenced, that we can hardly bear to engage them for fear
of what we will discover. For the worry that they will remain
buried under a drugs policy that aims to keep them imprisoned,
or away from their children, or falling through another sparsely
funded net. It sounds grim. But it is grim. My anxiety comes from this feeling that we have been failing women drug users and, with each year, their voices are just getting quieter, their hands farther away still. Yet we are here today. And we are here for a reason. I wish to encourage all those who work with women drug users to listen carefully, listen pro-actively and encourage the participation of women, for their input will be invaluable. It will be the drug using women of your client group that can provide you with the methods and language to access others more isolated. Evolving your service to meet the real, emerging needs of your female clients is unattainable without close work alongside the women who attend it, and this is what I want to raise with you here today. Involving women at every level is paramount. The development of schemes that are based on (and grow with) a grassroots level of understanding of the women they're aimed at, will be more effective and accessible. That is so important. Because the impact drug use can have on a women's life can be immense, often harsher, more brutal or more stigmatised than males. It affects their children, and for women who are carers, or the glue within an extended family - blame and punishment are quick to manifest. It can have a lasting impact on our lives, as violence, alienation, isolation, can all mean different things to women than men. We are only just starting to uncover what drug use means to women within ethnic minorities - the sea of white or European faces at drug treatment centres, is a constant reminder that treatment is based on the white, male, 20 something premise. From personal experience, after noticing the lack of ethnic faces, particularly women, my other immediate concern is the rapid exclusion of more 'chaotic' women - women that I, and many others, would call extremely vulnerable. They may be the first accepted in treatment but they are often the first to leave or be 'discharged'. We are not engaging these women. Within treatment, one has an excellent opportunity to liase with women, to provide links into other women's services, reach out to support them practically, offer some possible safety or stability. Lets use it. Why, with the rates of abuse and mental illness that affect many women who use drugs, do we not have a woman only drug treatment centre? Perhaps it may yet become a possibility, offering support for those very vulnerable women, a unique place that offers a bit more than just methadone dispensing and urine testing. If we do not begin getting this right, how are we going to deal with the changing faces of drug use? Attitudes Running Ever Deeper Today, with the rates of HIV increasing faster for women, ignorance within societal attitudes have ensured that positive women often become vessels for a great deal of societys fear and judgements. The stigma that surrounds women and HIV often has its roots in old ideas of promiscuity, used women, diseased, sick women, infectious mothers. Yet even when centres or organisations focus on the issues that surround positive women, when it comes to the positive women who uses drugs - it stops short. And as an HIV positive woman myself, I know this is true. I have experienced significant problems around accessing support within HIV organisations only to be sidelined as their insight into prejudices extend all the way to HIV/AIDS but not to the drug user with HIV.Although it pains me deeply to say this, I feel I must be totally honest about the depth of the stigmatization drug users face even, I found, in places for positive women. As far as the medical profession is concerned, I suppose I expected that the seriousness of having HIV would somehow transcend the usual attitudes towards drug users. I certainly didn't expect to be completely ignored, invisible, immediately excluded from all drug trials, presumed to become a treatment failure as 'junkies' could never be responsible enough to stick to any sort of drug regime. While I can only talk of my own personal experiences, I know they reflect the experiences of many positive, drug using women. The high rates of HIV among eastern European drug users will become more and more of an issue as people start seeking help - indeed as HIV grows steadily in the heterosexual community the horrendous combination of drug use and violence is keeping more and more eastern European women hidden or imprisoned as sex workers - how are we going to reach them? In such cases, it will be essential to find ways to access these women, gain their trust and work closely with the women affected in order to reach others. I could talk much more about attitudes, within society, within families, within the drug using community, indeed the consequences of them run naturally through this presentation, however I want to focus more on 3 particular areas where although attitudes are rife, there remains excellent opportunities for an impact to be felt through the work we can begin today. These 3 areas, I believe, are areas where what is now being called 'The preventative pound' can be utilised effectively. Certainly my own experiences have given me an insight here and I feel that with targeted, sustained approaches, that are dynamic, innovative and unafraid, a very real impact could be made to womens lives. The first one centres on pregnancy and motherhood for women who use drugs - Motherhood Terminated The stigma, hysteria and misinformation surround drug use and pregnancy, has left a variety of serious and deeply ingrained problems. But before we even begin to discuss the experiences of a woman whose pregnant and wants to have her baby, may we consider the attitudes of people, the medical profession, even those in womens health, towards drug using women who become pregnant and the barely disguised pressures to terminate your pregnancy. I can assure you it is a very real issue. I discussed the experiences of 7 terminations with drug using women for this article, doctors suggested sterilization, hideous comments were made about 'how doctors now have to 'clean up your mess', barely disguised disgust from those involved as each experience was treated like an irritation, something that took up bed space and doctors precious time. We wont even mention issues around getting pain relief afterwards.
A constructive
approach here is extremely warranted and would save many problems
manifesting themselves later on. As problematic drug use often
happens on the margins, hidden away, the effective use of the
time when a woman presents for help or services is crucial. If it can help support and change a woman's experience as she goes through the process from GP to post pregnancy care it could have a huge impact on the her future, that of her child and certainly the way she will interact with services if needed in the future. Younger Women, Smaller Choices Support for young women who use drugs is another crucial area for the development of better policies. The tiptoeing that goes on around tackling youth and problematic drug use is leaving young women exposed to a whole range of concerns. Often hidden away, the younger women who begins her drug use, often in environments where they are surrounded by older drug using men, has left them in extremely vulnerable situations. The adolescent female who is unsure of themselves may lack the assertiveness and skills to negotiate safer sex, leading to a myriad of problems, both immediate and in the future. Poor or unsafe injecting practices, born out by statistics that Hep C is usually contracted within the first 2 years of injecting are deeply worrying. Young womens first step into the drugs world often means through their boyfriends or partner and thus the beginning of injecting is often at the hands of another. As I have witnessed, young women who depend on their boyfriends to inject them can end up in very worrying situations, like waiting, sick for hours on end for their boyfriend to return with the drugs, sometimes leading them into more desperate situations, and then are injected by a stoned and often inexperienced male. Girls who are led into crime, shoplifting, prostitution, carrying drugs etc are also being sent to prison at an alarming rate and half of those released are returning to prison within 2 years. Finding ways to reach young women who use drugs is paramount if we are to properly tackle womens issues and to do this we need better education, targeted at women, in their cultural language. Literature they will believe in, preferably written by their peers would be helpful as would specially trained outreach workers who can gain the support and trust of the local drug consuming youth. We need innovative approaches here and even the involvement of older drug using women, as mentors, as friends, as advocates which could be very useful in providing harm reduction education and to act as a bridge into health. or welfare services. A focus on methods to ward of injecting before it starts though peer led education, discussing other ways to ingest ones drugs may be controversial but practical and ultimately better for the individual. Money put into this area will pay dividends as long as careful consideration into the opinions and views of young women themselves is given and involving them becomes central as to how approaches and or projects are developed. Prevention here is also key, setting young women up with knowledge, support and contacts for the future. The third area, and one I won't go into as it has been covered more deservingly already today, is women and prison. Again, preventative measures - getting to young women before prison becomes an issue, offering treatment in a multifaceted setting, so we are not just offering them a lifetime on methadone or a revolving door through one clinic into the next but the option of skills, or practical and psychological support. Addiction to drugs is an ongoing relapsing condition, with behavioural, psychological, social economic and chemical components and punishing users with punitive treatments is not going to work. I hope there is the opportunity soon to develop a women only treatment centre that can look, not just at methadone for heroin addiction but at interventions for crack and benzodiazepine use which can affect women very harshly and in a myriad of ways. "Addiction to drugs is an ongoing relapsing condition, with behavioural, psychological, social economic and chemical components and punishing users with punitive treatments is not going to work". Recently, a female friend of mine entered treatment with a crack and heroin problem, which the staff were told about upon her entry into the clinic. She was offered methadone but had to hide from her keyworker all traces of her crack use in case her methadone dose was reduced, which it soon was through crack appearing in 'dirty urines'. Despite receiving no treatment or interventions for her crack use, she was soon discharged from the clinic because she was still using it, although she had almost stopped using heroin completely. Now, she is again using both. While the NTA has alluded to this as being an incorrect way to treat those with more than one addiction, how long is it going to take before it trickles down to the drug clinics. Involving Women Now I have been focussing on vulnerable women, or women in vulnerable situations. It does not represent the majority of women who use illegal drugs, because most use drugs in controlled ways and without serious consequence. We know very little about how they manage and control their use just like we know little about those who's drug use remains hidden for fear of the effects it will have on their families if they seek help. But hidden or visible, we need to make big changes, to be really addressing women's issues - We cannot do this effectively without involving the women concerned. Finding ways to harness the views and ideas of women who use drugs, about the services they use, the drug settings they live in, their problems and concerns will help us create better schemes and projects for their needs. To give using women a voice in the creation, development and evolution of a service will a positive knock on effect for everyone concerned - because it goes much deeper than just the search for service user views and then identifying and implementing best practice. For the women within the drug using community, it is intrinsically linked with the rich and complex issues that are 'our lives'. Our involvement, or not, is linked into how we are treated, medically, emotionally; How we are seen - through preconceptions, discrimination; How we are affected - as we move towards a level playing field, a place without tokenism but meaning - with real mechanisms to carry our views from the table onto the national agendas. And as such, to not have a working policy of user involvement now speaks entire volumes about the approach - and often attitude - of a service or project. But its not only a more accessible, or more effective service or project that will benefit from the decision to include women fully, the women involved will also gain a great deal Personally, and for many of my peers, beginning to get involved in services didn't come from being content - it came out of a deep frustration, depression and anxiety about the effect treatment was having on mine and others lives. Becoming involved in my own treatment, but really becoming involved - even if the first time was a total failure and resulted in me being discharged from my clinic, even if I came up against one brick wall and then another, it soon became impossible not to keep trying. The light had gone on for me and I couldn't turn it off. Discovering a voice became a way of not only alerting staff to issues or concerns, but verbalizing them for me helped me to see my way through them - helped me to see solutions, gave me the courage and perseverance to try and make change. Change that would spread into my own life and empower me as I saw it empowering others. On many occasions, I have witnessed such prolonged and intense enthusiasm by my peers to affect such changes, - as I mentioned before, after years of feeling 'unequal' - unable to discuss concerns freely as one sat across the desk from the doctor that held your script in their hand, your hope of stability, off getting off the street, away for a minute from the chaos of using - when those doors open to you, when the opportunity for raising those issues presents itself, it can be a very emotionally charged, intense and exciting time. I have seen it transform people, the weight lifts off their shoulders and they throw themselves wholeheartedly into the process of communicating and rallying, volunteering and fighting to develop or keep their service. But I have also seen, in the space of a year, brick wall after brick wall emerge. Frustration at the lack of real progress emerges, will and strength dissolve where the best of intentions lay before. User involvement workers getting thrown in at the deep end, words like 'lip service' or tokenism get bandied around. When it's Too much, for Too Long It is important to remember though, when courting users views, they're can be a propensity to ask too much for to long, with too little in return. The exclusive 'inside knowledge' that using women have developed through lived experience, has often been at "huge emotional, familial and financial cost and people can forget or ignore the price users have paid, exploiting this fragile 'privilege'" (quote VANDU) Clients of services have often to put aside years of frustration and thoughts of 'it won't do any good to get involved' and must step up to the challenge - crucially, Id say, remembering to seek allies at every turn, to re-skill oneself, be prepared for the dips that come after the peaks, keeping a time frame for change in sight- with both sides working to meet it. Good or bad, drug treatment centres usually end up playing a large part in users lives, daily or regular attendance, peer interactions, feelings of powerlessness or inequality etc and as such, positive changes here will affect lives. NEPs also deserve a special mention as they are in a perfect position to engage those women who may appear either very rarely or, for the first time, and the way they are dealt with or treated will be instrumental in whether they come back, or how long they take to do it. This again affects lives. I know this from personal experience. Consistently working closely with users, supporting and courting their views, engaging them in discussion and putting things into practice is the only way really effective insights can be gained into the needs of service users, and how a service can be improved. It seems obvious really.
I would
ask the staff of services/ DAT coordinators etc to push aside
any preconceptions or anxieties they may have about involving
users and take the plunge. Network and find your allies, they
are there, indeed, they are here today…Fully engage the strength
and knowledge of our sisters in Europe, the sex workers networks,
the activists, the pioneers of new women's projects.
Erin
O'Mara |
