As the oft-cited mantra “Nothing about us without us” suggests, the involvement of people who use drugs in drug research and policymaking is essential.
This is not only true from an ethical standpoint but also in terms of effectiveness and logistics. In the drug policy and drug-user health realms, people with lived experience offer invaluable insights and trusted access to the community. Both of these are integral to the work.
Yet despite this, the involvement of people who use drugs is often last-minute, tokenistic or even harmful to those who put their hand up. If anyone understands the importance of doing it better, it’s Annie Madden.
Located in Sydney, Australia, Madden is currently completing her PhD at the Centre for Social Research in Health at the University of New South Wales. Her PhD looks at “drug-user representation in high-level drug policy settings” from the perspectives of those who do this work and those who work with them.
“I have been that person. I know what it’s like. And I know what it takes.”
Madden refers to herself as a global drug-user activist, and her past career backs that up. Her PhD follows 16 years as the CEO of AIVL (the Australian Injecting and Illicit Drug Users League) along with other senior roles in organizations including NUAA (NSW Users and AIDS Association).
Her days in drug-user activism can be traced back to the late ‘80s at university in Queensland, where—as an injecting drug user herself—she saw the advent of HIV/AIDS and helped found one of Australia’s first peer-based drug-user organizations and syringe programs. She was later awarded the Order of Australia for distinguished service to community health, policy and advocacy.
“There’s some research around consumer participation in drug treatment or recovery settings, things like that, but nothing that looks at a high level,” Madden told Filter of her move to academia. “People who use drugs have been in these really high-level policy spaces for decades but no one really knows anything about it.”
By high-level, she means things like ministerial committees, parliamentary inquiries, drug summits and settings like the UN Commission on Narcotic Drugs (CND). She has completed a 30-year review of these types of events alongside interviewing people globally on what these environments are like for directly impacted people.
“I wanted to know, what happens to drug-user representatives in those environments?” she said. “What’s it like, to be that person at the table? To be the single person with lived experience on a large, highly-credentialed committee?”
Applying critical feminist and poststructuralist theories, Madden hopes to avoid the type of academic work that sits in a drawer, and instead create something that is accessible and useable. The aim is to help people with lived experience to not only continue to get a seat at the table but to thrive there.
“I’m not pretending to have some objective viewpoint here either,” Madden said. “I have been that person. I know what it’s like. And I know what it takes.”
“I’ve never been so politely fucked over in my whole life.”
Perhaps not surprisingly, her research (which will be finished early next year) has exposed a troubling environment. There are overt discriminatory and stigmatizing behaviors, but also those that are not conscious, which in many ways makes them harder to tackle.
Things like the location of events—given that it can be difficult for people who use drugs to travel—can be a barrier. But the more harmful moments are those subconscious attitudes.
As Madden put it, “I’ve never been so politely fucked over in my whole life.”
It takes a lot of bravery to enter these environments as someone who uses drugs, yet for some people, being the voice of their community is worth the pressures.
A new mentorship program from INHSU (the International Network on Health and Hepatitis in Substance Users) and INPUD (the International Network of People Who Use Drugs) hopes to encourage others to do the same.
Last month, the Jude Byrne Emerging Female Leader Award was launched at the 9th International Conference on Health and Hepatitis Care in Substance Users (INHSU 2021) in honor of global drug-user activist Jude Byrne, who passed away in 2020. Two mentorships will be awarded, to activists with lived experience who identify as women.
“Jude Byrne was instrumental to the drug-user rights movement,” INPUD Executive Director Judy Chang, who is based in London, England, told Filter. “She helped to found INPUD, was a mentor figure to a lot of people who use drugs and was instrumental in bringing people to the movement and inspiring them.”
While there has been a lot of informal mentorship within the drug-user activism movement, as far as anyone knows, this is the first formal program to assist people who use drugs to gain the skills, knowledge and support to thrive at whatever level they aspire to—local, national or international.
“There are a lot of unique stresses to being a leader within the movement, which has led to a realization globally that we need to build resilience,” Chang said. “It shouldn’t just be a few key people. Devastatingly, a lot of activists that people looked up to have also died due to the overdose crises or the impacts of criminalization.”
The nine-month mentor program (sign up here to be alerted when applications open) hopes to build the next generation of leaders and will be very flexible. Award recipients will be able to choose what area to specialize in—such as research, advocacy, community mobilization, or anything else they might want to focus on.
“We want to see people who use drugs there from the very beginning … in the research design phase, all the way to the writing and publishing.”
Chang—who has lived experience, as well as an extensive history of leadership roles in drug-user organizations—has for many years advocated for people who use drugs to take active roles in research, policy and advocacy. The mentorship program is the antithesis to what she has seen happen time and again, in line with Madden’s research: the tokenization of people who use drugs in these environments.
We can only hope that opportunities like this, and research like Madden’s, will increase momentum toward people who use drugs having a deeper impact on the research and policies that shape their future.
Until then, Chang, Madden and others have some practical advice for researchers and project managers. “We want to see people who use drugs there from the very beginning,” Chang explained. “We want to see them in the research design phase, all the way to the writing and publishing.”
She added that while this could require some capacity building along the way, the pros far outweigh the cons. “You need to plan to assign more budget and more resources from the very beginning. You need to put this effort in—to take people on that journey—because otherwise, it’s always just going to be a tick-box activity.”