Several years later we ask INPUD, is it an organisation that is both representative and responsive to this extremely challenging picture? How does it seek to be representative within its own organisation when it is so busy demanding ‘meaningful involvement’ of people who use drugs in other global agencies?
magine you're trying to create an organisation to represent the interests of 26 million people in dozens of countries across the world. Now imagine the people are illicit drug users, defined by negative attitudes, criminalised and weighed down by society's ignorance. And now think how your organisation will respond to and represent such complexities in a political arena. How it will challenge other major global agencies to listen and effectively engage this group and tackle the massive health and societal fallout that affects the millions of people who use drugs today. This was the momentous task that confronted activists within the drug using community as it struggled to launch its first international organisation.
I
Meaningful Relationship
INPUD and GIPA: Towards a
involved in.
closer look at the kind of work INPUD is
INPUD’s work and to give members a
members on some of the issues that affect
interested parties. The aim is to update
cles for INPUD’s membership and other
This is the first in a series of 6 feature arti-
November 2010
Although the idea for INPUD arose years earlier, it officially began in 2006/7 and was soon supported by seed funding from IHRA* . However it was in Copenhagen in November 2008 when INPUD was 'relaunched' and took on the shape it holds today. The shared vision that emerged from the 'Nothing About Us Without Us' campaign quickly became the statement that spoke to thousands of users across the globe, a shared vision everyone instantly understood. It drove forward the idea that personal experience, knowledge and the full involvement of people directly affected by illicit drug use must be central in shaping drug policy and practice; that there was no other way to seek the kind of public health solutions, humanity in treatment, sensible drug law reform and the saving of millions of lives - unless drug users themselves were intrinsically part of the challenges and strategies that lay ahead; locally, nationally, regionally and internationally!
Bringing People Together
Pic by HCLU: Just a few of INPUD’s members and activists (top right - Jude Byrne (Chair of INPUD) see INPUD film by HCLU at http://drogriporter.hu/en/inpud
INPUD Issues; Volume 1, Issue 1
As INPUD pushes further forward to find partners and allies, global agencies have begun to open up and become more receptive. INPUD has had to work creatively and with vision to partner (as an independent organisation in its own right) a whole range of
Finding Partners and Allies
However, although people who use drugs should have always been seen as a central tenet in the evolution of harm reduction, it has still been a long fought battle for equality with many health professionals in the field. Over recent years as INPUD has taken shape as an independent international organisation, it has been reaching out from the somewhat insular world of harm reduction to other civil society groups on the global stage that share common themes: Public health issues such as HIV/AIDS TB, Hepatitis C and drug treatment; human rights violations and cultural oppression, drug law reform and criminalization, imprisonment, and race and gender inequalities - all complex issues that directly affect people who use drugs.
As we know, in recent years, drug users have almost always organised alongside the harm reduction movement. Sharing a similar ideology, harm reduction is a field that, in order for it to really thrive as a public health paradigm, it needs to understand and even embrace drug culture. It has almost become a language in its own right that speaks to the drug using community and has become a vehicle for drug using activists to reach into and across our communities and create a much needed dialogue around our own health and welfare issues.
Banging on the doors of the HIV sector in the past had never been a welcoming prospect. It seemed like drug users were always the 'ugly cousin' of HIV/AIDS target groups or 'key populations' and were subsequently given a fraction of the investment in prevention that other groups saw. Any direct involvement by people who use drugs from service commissioning to policy, was mostly tokenistic.
The GIPA Principle
Alongside the huge amount of work involved by activists over the years, there has been an element of good timing involved as well. We are beginning to see the impact of work that began years ago by civil society groups, finally rippling outwards to the drug user movement; The GIPA Principle (Greater Involvement of People living with HIV/AIDS) is a clear example of this.
PIC: The International Harm Reduction Conference in Liverpool 2010 where INPUD met up with members: inset: IHRA’s new logo, denoting a change of leadership at IHRA and a new chapter in relations with INPUD.
international agencies and networks. Getting to understand the vastness of where INPUD fits into the global arena, and how to 'speak to', access and be 'meaningfully involved' in huge and often extremely bureaucratic agencies like those under the United Nations umbrella (eg: UNAIDS, UNOCD), and the WHO (World Health Org), and dozens upon dozens of international and regional civil society orgs (NGO's*) like GNP+, ICASO*, IAA*, WAC* is a huge challenge. In addition there are the funding bids to international donors and funding bodies like the World Bank, Global Fund, DiFiD* and many others. There has also been the reframing of relationships with other drug specific international agencies like IHRA, who are re-connecting with INPUD not simply as a loose group of varied national activists but as a partner organisation in its own right.
However, taking principles and putting them into practice has been the greater challenge for GIPA, and one the drug using community understands only too well; it is
GIPA is in effect, a principle; 42 governments initially signed up to it in Paris 1994, supporting the "full involvement of persons living with and affected by HIV/AIDS...in the common response to the pandemic at national, regional and global levels…..and to … stimulate the creation of supportive political, legal and social environments.""
So what does it mean?
This time however, INPUD has been able to work with some of the tools that have been created and developed by civil society organisations, in order to lever itself into working alongside global agencies. One of the main tools has been the GIPA principle. GIPA stands for Greater Involvement of People Living with HIV/AIDS and, although developed back at the Paris AIDS Summit in 1994, it has become a document that has increasingly opened the doors of government and civil society bodies to marginalized groups -people like us people who use drugs.
GIPA continued...
Pic: The offices of UNAIDS where GIPA was endosed by 196 member states.
In 2006, the Political Declaration on HIV/AIDS, adopted by 192 Member States would also advocate for the greater involvement of people living with HIV, and it now sits alongside many other documents that member states have signed up to, that all accept and call for greater involvement and more meaningful participation of affected groups - us!
GIPA Good Practice Guide, June 2010 International HIV/AIDS Alliance and the Global Network of People Living with HIV (GNP+) 2010
'Participation leads to ownership, which is essential for sustainable social change.'
And, as for actions for international partners….:Harmonize, simplify and create more flexibility in donor/partner procedures to facilitate access to technical and financial resources for organizations and networks.
Governments, international agencies and civil society must: "Set, implement and monitor minimum targets for the participation of people living with HIV, including women, young people and marginalized populations, in decision-making bodies. Selection processes should be inclusive, transparent and democratic…"
As the 'meaningful involvement of key populations' affected by HIV/AIDS became essential in developing responses to the HIV/AIDS pandemic, so the door has opened to the (primarily injecting) community of people who use drugs. (continued)
both organisations to joint working around the needs of people who use drugs and live with HIV and mutual support.
The meaningful participation of people who will be affected by decisions that impact their lives is widely regarded as good practice by international development practitioners, community development workers and health promotion specialists and by 2001, 189 member states had INPUD and GNP+ (Global Network of endorsed GIPA, signing up to Network of People Living with HIV) sign words like this: Memorandum of Understanding to commit
INPUD making links with sex workers in Porto; it too must implement GIPA
While it could be said that the origins of GIPA grew out of the massive social and political gaps in the quality and type of responses to the HIV epidemic, it has also been said that 'We must avoid the mistake of viewing these GIPA initiatives as an extension of existing approaches or strategies, rather than as something that is rectifying the gaps in those very same approaches.'' UNAIDS GIPA Policy Briefing.
the difference between tokenism and greater, more 'meaningful participation' of marginalized groups.
WAC (World Aids Campaign) GNP+ (Global Network of People Living with HIV) UNODC (UN Office of Drugs & Crime)
You can keep updated by checking www.inpud.net & www.inpud.wordpress.com for *GLOSSARY: NGO's - Non on Governmental Organisation detailed information INPUD and keep anIHRA eye (Int.Harm Reduction Assoc, ICASO (Int. Council of AIDS Orgs) out for printed articles at your services. DiFiD, (UK Dept for Int. Development) IAA (Int. AIDS Alliance)
I have seen INPUD's activists and colleagues acknowledge and work amongst the depth and breadth of difficulties faced by those who use drugs, and many of the human rights violations inflicted. However, here and now its primary function is to focus on areas where there is the most harm, the most ill health and disease, the most abuse. As INPUD's 3 year strategy is released, we must keep unified, debating and discussing, networking and partnering and pushing doors open. There is a long way for INPUD to go, but there has been a long road traveled and INPUD is currently showing the strength to take our fight and our hopes much further.
INPUD carries a huge burden and commitment on its shoulders, as well as the hopes of many thousands of people who use drugs. It also has to bear the brunt of distrust as some in its own community will continue to look away in suspicion at INPUD's mission, after years of oppression, incarceration and crushed self worth.
Created by Black Poppy Publications UK for INPUD www.blackpoppymag.wordpress.com
The 1983 Denver Principles www.actupny.org/documents/Denver.html The 1986 Ottawa Charter for Health Promotion www.who.int/healthpromotion/conferences/previous/ottawa/en The 1994 Paris Declaration www.ecpp.co.uk/parisdeclaration.htm The 2001 United Nations General Assembly Special Session on HIV/AIDS Declaration of Commitmentwww.un.org/ga/aids/docs/aress262.pdf The 2006 United Nations High-Level Meeting Political Declaration www.un.org/ga/aidsmeeting2006 Code of Good Practice for NGOs Responding to HIV: Renewing Our Voice www.hivcode.org
Today there are numerous international guidelines and commitments that acknowledge and support the involvement of those living with HIV and other health conditions that you can use as tools, including:
There are many other policy documents of similar importance that can now be slammed down on the table of intransigent or conservative organisations and governments to make them sit up and take notice. See below for some of the more important documents to include the requirement to involve the community of people who use drugs.
HIV positive drug users who have appropriate Looking Back Looking Forward skills and can assist global organisations in trying to ameliorate the effects of the HIV pandemic are now being called upon to speak As an HIV posiout. A group whom no one ever cared tive drug user whether they lived or died, are - through vehi- myself, it still cles like INPUD and a policy document like feels strange GIPA, now able to hear their words echoed at to find myself UNAIDS and UNODC, and see them ham- w a l k i n g mered home in policy documents, pushing Governments, international partner agencies - agencies and civil society must: Pic: Mat Southwell speaking at and member states - "Set, implement and monitor minimum tar- UNAIDs to recognize the gets for the participation of people living value of working - in with HIV, including women, young people around places like partnership - with and marginalized populations, in decision- UNAIDS, offering my opinion, and contributpeople who use making bodies. Selection processes ing to policy docudrugs. should be inclusive, transparent and dem- ments. It is even more ocratic�; and marvelous to see globThese days, firmly al agencies actually lis"involve people living with HIV in developembedded into tening to our colUnited Nations policy, ing funding priorities and in the choice, leagues and their fight GIPA calls for the design, implementation, monitoring and for their human rights direct acknowledge- evaluation of HIV programmes from their and their life and ment of the need for inception.� (GIPA) death battles in the not just greater - but Ukraine and Russia, the more meaningful involvement of our comand now Afghanistan. munity - injecting drug users with HIV/AIDS.