Lived and living expertise – insights from the 15th Australasian Viral Hepatitis Conference
The 15th Australasian Viral Hepatitis Conference brought together community members, researchers, practitioners, and policymakers to push forward efforts to eliminate hepatitis B and C.
In this collection, we spotlight presentations from people with lived and living experience of injecting drug use and hepatitis C.
These stories – which we have left in the presenters’ own words – resist stereotypes. They show the power of lived expertise to dismantle entrenched systems, reshape service delivery, and defend the rights of people too often pushed to the margins.
You’ll read:
We can and should eliminate discrimination – Sione Crawford
The elimination of hepatitis C by 2030 is a sector goal, not a community one – Peta Gava
Lived Experience peer workers provide non-stigmatising hep C healthcare: 22,000 community members engaged through Hepatitis NSW lived experience programs – Liam Grant
"Innovating Ethically", Ethical Considerations in Finding the ‘Missing Thousands’ and Sustainable Hepatitis C Elimination – Charles Henderson
Collateral damage: The hidden role of stigma towards people who use drugs in law and policy – Ele Morrison
We can and should eliminate discrimination
By Sione Crawford, Chief Executive Officer, Harm Reduction Victoria (HRVic)
Now—I’m not going to show you any more data today. I don’t think I need to make the case that stigma and discrimination are still happening to too many people. So, I’m just going to have a go at speaking plainly about this today.
When I first looked at our Australian data on discrimination and injecting drug use —the same data I’ve been using for years—I felt a bit deflated. But really, I was pissed off. And that’s what I want to talk about today and I want to highlight a few key things:
Sometimes we talk about the wrong things, in the wrong way, in the wrong context.
While there is great healthcare happening, there’s still far too much really crap healthcare happening.
It’s both really hard, and really easy, to make it better.
Now, disclaimer: this is a Viral Hepatitis Conference, but I’m going to focus mainly on hepatitis C. I know friends working in hep B have their own versions of these issues—I won’t speak for them, but I know they matter.
So: discrimination, stigma, and hep C.
It’s about injecting drug use, obviously.
I’ve recently heard it said that people who inject drugs have good access to hep C and health services. That kind of inference is, to be honest, thoughtless. It’s the wrong thing, said in the wrong way. And propagating it is harmful.
Yes, many people who inject drugs have extensive medical histories. But let’s be real about why. Often, it’s because we’ve been in prison or in corrections and came into contact with health services that way. Or we’ve been part of a research project. Or we’ve used the Emergency Department as our primary healthcare. Or we’ve been on opioid treatment at some point.
The reason is simple: most of us don’t actually have access to healthcare. We have a facsimile of access—a version of it that looks okay on paper but isn’t real. Needle and syringe programs, for example, are not healthcare. As fantastic as dedicated NSP’s and workers are, the truth is most NSPs across Australia are just a receptionist handing out equipment, or maybe a cupboard in a clinic.
You might have seen the HRVic video where Amanda gets tested and treated for hep C through the outreach van. That’s great—but in reality, that van was part of a research project that has ended. The people in that community might be okay for now, but what happens five or six years down the track, after half of them have cycled through prison again? That’s not sustainable healthcare access.
As others have said more eloquently, stigma is pernicious because it’s hard to grasp and hard to prove. But it follows you around. Even with my own privilege these days, it’s still there.
Take my hip. When I tried to get my arthritis treated with a new hip, my GP tried to refer me to four separate hospitals and I didn’t even get a consultation at any of them. No reason given, but both my GP and I assumed it was discrimination. On my referral letter my medical history said I had a history of hep C and dependence treatment
Yes, this was post COVID when hospitals were stretched.
When the system is stretched, who wears it? People with complexity. I was lucky enough to find other options—drawing on work, my partner, my family. But not everyone has that. And the number of stories we hear from our services of people being treated appallingly is unacceptable.
One example: someone was frozen out of podiatry care, literally left hobbling mid-treatment. Why? Because once their methadone prescription was listed, their appointments were postponed, then cancelled, then they were just dropped altogether. That’s not stigma—that’s discrimination. And that’s why I think we need to always name it.
My colleague Vrinda from VMIAC (peak Victorian organisation for people with a lived experience of mental health problems or emotional distress) reminded me of this: stigma is broad, it’s conceptual, it’s easy for people to dismiss. But discrimination is an action. It’s illegal in many contexts—just not always in ours. It’s the thing we can and should eliminate.
Stigma gives systems an excuse to do nothing. Discrimination calls systems to account.
Back to my hip: eventually I did get treated. But it was delayed by years. And it’s telling that when I accessed private healthcare, my experience was completely different. The specialist, the anaesthetist, the nurses—everyone was respectful, welcoming. Everyone should have that experience.
This morning, Peta Gava (Peer Based Harm Reduction WA) said something that stuck with me: we need to “welcome people back into healthcare.” Because stigma and discrimination make us feel like healthcare isn’t for us. That simple act of welcoming people back is powerful.
From a lived experience perspective, you just know when you’re unwelcome. You can feel it in the room—the air goes cold when a nurse or doctor realises who you are. And you also know when you’re genuinely welcomed.
That’s why services like PAMS (Pharmacotherapy Advocacy Medication Support) matter. PAMS connects people to prescribers who will treat them with dignity. It’s short-term, solutions-focused, and peer-led. It works better for people on ODT, and it works better for prescribers. It’s welcoming because our operators will take the time that is needed to get to know callers and to build trust. They will not just find the quickest and easiest access option for us – they will find the best quality access option for our caller This usually leads to better prescriber and patient relationships and long-term stability. All peer-led models – whether in opioid pharmacotherapy treatment navigation or hep C peer navigation or naloxone and overdose training – work this way and it's proof we
So, to finish—I want us to talk less about stigma as some vague, untouchable force, and more about discrimination: the actual, harmful actions people face every day. And I want us to think seriously about how we welcome people back into healthcare, so that everyone—not just a few of us—can experience care that is safe, respectful, and discrimination-free.
Thank you.
The elimination of hepatitis C “by 2030” is a sector goal, not a community one
By Peta Gava, Overdose Prevention and Peer Naloxone Project Officer and Communication and Reporting Officer at Peer Based Harm Reduction WA and AIVL Delegate for Western Australia and member of the AIVL National Peer Network (NPN)
Our responsibilities transcend the pursuit of a quota. Sustainable elimination requires repairing the damage done to people’s relationships with mainstream healthcare, so they feel empowered to access care, not just once, but into the future. When people have experienced healthcare that is respectful, affordable, and accessible, they remain engaged and present - not just in times of crisis.
The real action required is to stop blaming the very people we aim to help and instead, fix the broken systems.
Let me be clear, from my own experience and the experiences of countless others I know, people who inject drugs are not hard to reach. This phrase, "hard to reach," fundamentally blames individuals for what is a systems failure.
So how do we fix this? How do we welcome people back to healthcare and ensure sustainable elimination when healthcare has become a hostile environment? What does reparation look like in terms of equitable hepatitis C care?
It starts with consent. Consent needs to be framed as people choosing to opt in and having full control over when they opt out, or how much of the process they want to engage in. It’s never just an “all in.” There are ramifications to my drug use becoming known. That is a fact, not a question, and it’s not a free pass if I don’t have the confidence or the literacy to ask questions about what making myself visible with a signature on a form actually means. If you don’t have the time to talk to us about it, or if you think your own agenda supersedes the need for it, step aside.
Alongside this, if I test positive, there should be a realistic conversation about my readiness to be enrolled in treatment at that time. If I need individualised support to do that, are you able to provide it? It’s no use writing articles about barriers to treatment and the social determinants of health if you continue setting us up to fail. Failure makes it even harder to come back and try again. No one should feel like they don’t deserve healthcare.
How many appointments will I have to attend? At how many different places? What if I have other co-occurring health or psychosocial appointments that make it hard for me prioritise treatment? Can you help me with transport? I might have a good relationship with you, but how many other people will be involved in my care? When venipuncture is required, are you a darts champ?
Stigma and discrimination are alive and well at the pharmacy. How difficult or triggering will it be to fill my DAA prescription? Will I be able to afford the dispensing fee? If I am experiencing homelessness, will I be able to manage 8 to 12 weeks of medication without it being stolen or lost? Can you deliver the medication to me one week at a time? I might need phone or face-to-face check-ins for support to help me stay on track while I’m on treatment.
This is what reparation and low threshold looks like.
Next, give people a choice. Collaborative models of care that include nurses and peer workers allow peers to gravitate toward one or the other. Healthcare providers may have lost their credibility with our community, but peer workers can help you earn it back by lending you ours. In turn, you can help to build our credibility by investing your time into helping us build our skills if we want to. Formal training is important, but informal training is just as important. To the nurses in the room, spend time on the road with us on outreach and conducting follow-up. If a patient consents, allow us to sit in on patient consultations when that is appropriate and, at least, leave us better than you found us. Multi-disciplinary teams are what we need but remember, every piece of the puzzle is as important as the other to finish the project – no one person is greater or lesser because of a doctorate or a degree.
Peer workers are professionals in our own right, but we are also force multipliers. We can increase the capacity of nurses in the same way that nurses increase the capacity of doctors. If your clinic does not currently employ peer workers, and if we truly care about better outcomes for people, it’s time to collaborate.
Find out more about Peer Based Harm Reduction WA: https://harmreductionwa.org/
Watch a short film of their work here
Lived Experience peer workers provide non-stigmatising hep C healthcare: 22,000 community members engaged through Hepatitis NSW lived experience programs.
By Liam Grant, Peer Partnership Program Coordinator, Hepatitis NSW
From the mid 2000’S onwards, Hepatitis NSW peer-based programs continue to prove the effective successes and value of lived experience practitioners working alongside community and clinical partners in provision of qualitative hepatitis C healthcare recognised as legitimate and non-problematic for community.
While many in the community were lost to the fight prior to introduction of DAA treatments, these predecessors paved the way for the crucial combination of lived experience peers, accessible life-changing treatment and increasing destigmatisation of clinical services.
Within Hepatitis NSW, this has resulted in expanding the development of programs which deploy lived experience programs across the state.
Through progressive employment opportunities for the HCV community, I am now one of three program officers empowered by Hepatitis NSW to coordinate the expertise of our peer workforce. This has been transformative in fighting stigma and deconflicting the hepatitis C space, while growing representative opportunities across the sector and increasing the agency of our community in achievable, identified career pathways.
The capacity of the organisation in reaching 22,000 people has always been underpinned by our incredible peer workers. The numbers of people engaged, and the quality of the engagements behind those figures, are thanks to the strength of all our lived experience peers, who are brave, resourceful, highly empathetic and professional in achieving better outcomes for the communities they serve and represent.
The span of this engagement data begins in 2017 and continues to grow through optimised, collaborative, forward-facing programs. These programs both facilitate community engagement and support NSW HCV elimination goals.
From either being a first point of contact in a cascade of care, to assisting with client intake and performing HCV testing across various modalities, the embedding of lived experience peer workers is critical in offering non-stigmatising, low barrier access to hepatitis healthcare:
To date, community-based engagements have reached over 22,000: Hepatitis NSW’s peer programs and campaigns are seeing year-on-year growth through the size of peer worker teams, variety of programs and the capacity of programs and peer workers.
Within these more than 22K+ of engagements: approx. 9000 people accessed follow on healthcare, representing a 45% linkage to clinical services. From this, nearly 7500,or 40% of people receive some form of hep C testing. All from the initial point of contact with a peer worker.
These figures demonstrate how crucial deployment of lived experience peer workers are in achieving hepatitis C elimination. Hepatitis NSW peer-based programs enhance the outcomes for community interaction and are built on the easy rapport and recognition of community peer workers being trustworthy and worth listening to.
This is underlined by the clinical achievements of health partners utlising peer-based models of care to connect with groups reticent to otherwise engage health services and concurrent forms of testing.
The valuing of lived expertise, in tangent with effective, adaptive relationships across NSW Local Health Districts, community organisation’s and key research bodies, has ensured this exponential trajectory of community interaction. In 2017 it was 531 people, last year (2024) it was just under 4000.
There is a much larger conversation to be had on the reality of lived experience peer workers as change makers, and their increasing importance in every part of the fight to eliminate all forms of viral hepatitis. From my perspective the relative points are:
Utilisation of LLE In the viral hepatitis space is the way through for connecting vulnerable and stigmatised communities to viable healthcare and treatment options which retain the value of non-discriminatory, low barrier access and community-based support.
We, as a sector and community, must be conscious that current ‘elimination targets’ are public health goals, set at 90%. What lies ahead for the remaining 10%? Who do we, either, as workers, researchers, representatives, policy makers and society at large, choose to leave behind?
If we do not drive a narrative of 100% elimination, then those affected will be the same groups who are always left behind or excluded. All are someone’s loved one or friend, all have the right to be free of HCV. We cannot allow anyone to remain exposed to ongoing infection or the possibility of transmission.
No one can say what future drug trends may look like, or how elastic an effect will be created by claiming success at 90% and leaving active infections in the community. What is obvious is the possibility of increased, non-subsidised, demand for HCV treatment and a spike in associated illness and death.
So, to be just and responsible in protecting our communities, let’s make sure it’s 100%, not 90%.
"Innovating Ethically", Ethical Considerations in Finding the ‘Missing Thousands’ and Sustainable Hepatitis C Elimination
By Charles Henderson, Burnet Institute
We continue to position hepatitis C elimination among people who inject drugs as if we exist in a vacuum, isolated from law, politics, and the structural violence that has long defined our societal collective approach to drug use. But criminalisation is not incidental. It is intentional. And it works exactly as designed, to control, punish, and marginalise.
From the war on drug users, to today’s carceral public health logic, we are told laws are there to protect all of us.....But these laws were built on moral panics, dodgy ethics and racist ideology, rarely on evidence. What passes for drug policy is a human rights crisis, one that violates the right to health and dignity for people who inject drugs and people in prison because they are put there due to drug use.
To take a STS new materialist view, Hepatitis C is constantly made and remade by social and political forces. It’s criminalisation, stigma and discrimination that should concern us in the elimination of hepatitis C. The truth is, we’re not failing to eliminate hep C because we lack treatments, we’re failing because we lack the courage to stop criminalising people. It is not “best practice” if we lock people up for using drugs, allow police to hassle people attending NSPs, or if I have to lie about being in OTP to get a job. The real innovation isn’t in biotech.
This is biopolitics. Citizens made worthy…… or not, made less visible, less costly, less deserving. Elimination is about redistributing power.
You don’t cure disease by removing symptoms, you cure it by changing the conditions that let it thrive.
Despite landmark policy commitments to elimination, our efforts remain constrained by institutional inertia and the structural conditions that continue to marginalise the communities most affected. While innovations like DAAs are transformative, biomedical breakthroughs alone will not reach those disconnected from mainstream health systems. People who inject drugs still face these same significant barriers of poor access and disjointed care, none of which are solved by simply removing clinical gatekeeping.
Stop making us invisible. Make us visible and rely on the people who know what’s going on, peers, prisoners, people who use drugs, and not just for a quote in a report or paper, but to lead. A truly ethical and effective response demands not just inclusion of peer-based organisations, it requires that they lead. People with living experience of injecting drug use-Peer programs offer more than cultural brokerage; they reshape how trust, credibility, and care are constructed at the margins. Ethics in innovation cannot be reduced to ‘harm minimisation’ for the system but must address power, equity, and the political economy of who controls the conditions of care.
It’s time to demand that elimination means freedom, not control. That health care is a right, not a reward for good behaviour. We demand the choice to walk our own way in the world.
Our sustainable approach to innovation and ethics needs to be founded in the real world, a place where we are brave enough to take a courageous stand. I welcome the innovations of faster diagnostics, simpler service models, one-stop point-of-care, integrated systems and digital connections. But where is the innovation concerning criminalisation? Restoring dignity and equity by removing drug convictions, employment and housing precarity ……better yet not busting people in the first place. Best of all, losing the black market so we know what we inject, making it legally safe to stay safe.
And prisons.
ICESCR (International Covenant on Economic, Social and Cultural Rights), recognises the right of everyone to “the highest attainable standard of physical and mental health.” Everyone. This right does not end arbitrarily at the prison gate.
The Mandela Rules reaffirms the incarcerated retain all human rights - including right to health and also the right to equivalency of healthcare in prison as provided in the community. But what does this mean if we ignore basic harm reduction measures like sterile injecting equipment? Prison is not some health-neutral space, it is a site of state-sponsored transmission of hepatitis C. Failure to provide adequate harm reduction and virus transmission prevention, is not a policy gap, it is a human rights abuse.
Furthermore, peer-led services remain structurally underfunded, often tokenised, and siloed from the very health systems they could transform. Peer investment requires a shift from chronic underfunded passive recruitment to active state and commonwealth resourcing, from compliance-focused reporting metrics to quality-of-life and a focus on people wellness including hepatitis C harm reduction tools, and from clinical dominance to genuine community-led codesign.
On this road to eliminate hepatitis C, we need every tool: DAAs, testing, clean injecting equipment, knowledge but above all, we need connection. Connecting with those missing or still in harm’s way is difficult when people are pushed to the margins. Peers can if given the power and the ability. Not just because we know the ways and the works, but because we hold the trust. Don’t constrain this, empower a workforce, support training peer experts, build an army.
Criminalisation ties everyone down. Criminalisation undermines our ethical responsibility to care. Criminalisation says: hide, overdose alone. Don’t talk. Don’t ask for help. Don’t carry a sterile needle. Don’t be seen. It creates risk where there should be safety. This isn’t just about ending hepatitis C. It’s about ending the belief that people who use drugs are less than human. And that starts by listening, funding, hiring, and following the lead of the very people this system tries to erase.
We must speak up, act up, and create change. Dr. Martin Luther King Jr. wrote this paraphrased sentence from a Birmingham jail cell “One has not only a legal but an ethical responsibility to obey just laws. Conversely, one has an ethical responsibility to disobey unjust laws.”
We, let us all, challenge the idea that people who use drugs are undeserving.
We, let us all, confront the logic that says we must choose between law and life.
So, to sum up:
Legalise all drug use, end prohibition, so health is possible, not punishable.
Invest in peer-led harm reduction, in prisons as it is in community. Scale it up massively.
Hold government accountable to the Mandela Rules, equivalency and to the universal right to health.
Support low-threshold, person-centred services that reflect living-lived reality.
Disrupt unjust laws, through collective action, civil disobedience, and care.
Just last week, y’know what I caught on the news……., the biggest downloaded free app in the US is something called ICEBLOCK, what’s that? It’s a community-based app that allows anybody in community to help locate and spread the word on ICE agents – where they’re located - anywhere, any place, any time, so migrants without a green card – the target for these ICE agents - can be warned…can be helped to stay in America
Civil disobedience in action.
How ‘bout this? Can we do this for drug users?
Could we?
Ethically, innovatively, coming up with civil disobedience, pragmatically, philosophically…..sounds like harm reduction is the Trojan horse warned of for years, right?, well, let harm reduction be law change in practice. Bad laws need to be changed.
Can we?
We can’t cure hepatitis C if people stay hidden. We can’t build trust inside punishment. And we can’t claim elimination if it leaves the most marginalised behind. We need new ethics built from law change. We need action on bad law. And we need to, all of us, put our shoulders to the wheel, not just for the cure, but for the freedom to live, use, enjoy and heal without shame.
So, who’s in the room?
Let’s get to it,
Let’s fight the battle, even if we might not win the war.
Collateral damage: The hidden role of stigma towards people who use drugs in law and policy
By Ele Morrison, Deputy Chief Executive Officer, Australian Injecting and Illicit Drug Users League (AIVL)
I would like to acknowledge the traditional custodians of the Wurundjeri people of the Koolun Nation, whose lands we are on today. It always was and always will be Aboriginal land. I also want to thank the peers, people who use drugs, whose lives and work have made this talk possible. Finally, the work of Kate Seear and many of her colleagues, including Sean Mulcahy, has informed the background information I use in this talk, so I would like to thank them. Any mistakes or misrepresentations of their work are mine alone.
Throughout this conference, we will hear more about criminalisation, stigma, and ethics as they relate to viral hepatitis and people who inject drugs.
What I would like to talk about is the role of law and policy in producing and perpetuating stigma. Stigma is personal and structural, and it’s often hidden in the systems meant to protect us.
Australia doesn’t have a national Human Rights Act so we rely on the legal system to protect the things we consider our rights. The legal system is, however, the same system that criminalises our communities, imprisons us in facilities where we don’t have access to the same health and harm reduction services as others, and keeps us from full participation in society,
How Laws Create Stigma
Take for example, the use of terms like “addiction” and “dependence” in the law. These terms are important. They are used in many different parts of the law including criminal law, family violence proceedings, criminal compensations and social security law. Of the 36 pieces of Australian legislation that mention addiction and dependence, 22 don’t actually define what they mean.
The 2020 report, Addiction in the Australian Legal System, found that many lawyers and magistrates don’t have a deep understanding of drug use or dependence. It can be more useful to use a person’s dependence, even when it doesn’t exist.
In the courts, the lack of definitions can be used to work in the favour of whoever is using the term. For example, it can be a mitigating factor—something that happened “to” the person to make them seem more sympathetic.
“It’s always that tactic to try to see how they’re dealing with their ‘battle’, you know. ‘Addiction is very, very ugly, and it’s very, very lonely” (Seear K., 2020. Addiction in the Australian legal system: Findings and recommendations from a qualitative project. Monash University, Clayton.)
Or it can be an aggravating factor—something that makes the person seem more dangerous, so that it is more likely the person will be, for example, involuntarily incarcerated.
When and how to use addiction as a concept can also depend on who is being referred to. For example: the lawyer of an accused perpetrator of domestic or family violence who has used drugs may refer to their violence as being “caused by their use of drugs”, as a way to get lenience from the magistrate or in some cases, from the victim. If, on the other hand, the victim is the one being portrayed as having used drugs, they will focus on how the perpetrator, who is usually a man, was “lashing out” as a frustrated response to the victims’ drug use – the victim who is usually a woman. The victim’s use of drugs is seen as justifying the violence they are subjected to.
These loaded words and ideas have very real consequences. They don’t challenge stigma. They entrench it. They rely on stigma to function. They portray people who inject drugs as chaotic, unreliable, even dangerous. It isn’t based on an understanding of addiction or dependence or drug use informed by the work we do in our communities, or in current research. It is definitely not informed by the people or communities affected by these issues.
In fact, legal scholars such as David Moore, Suzanne Fraser have argued that “alcohol and other drug treatment policy (in Victoria) does not merely identify and respond to a preexisting condition called ‘addiction’; instead, it is one of the processes through which addiction is produced. (Moore D., Fraser S., 2013). That is, law is not responding to evidence and information about drug use, addiction or dependence. It is shaping how we understand these terms and our responses to people experiencing them. The law isn’t just failing to protect us; it’s actively creating and reinforcing the conditions that justify our exclusion.
Stigma in Criminal Record and Working with Children Checks
One of the ways this plays out in serious and ongoing ways is in our employment – including and especially our employment as peer workers. Peer workers are essential to the viral hepatitis response. My community, people who inject drugs, are the people who connect with the people most at risk of hepatitis C.
Many people don’t realise just how big a barrier background checks are in many of the services now starting to employ peer workers. They are used throughout our services, including many health and harm reduction services and there are important distinctions to make between the two main checks used:
Criminal Record Checks, and
Working with Children or Vulnerable People Checks
Criminal Record Checks give employers discretion which is where we often see the first major barrier. This is where we see the stigma of employers, especially in mainstream and health services. I was once told I couldn’t employ all 4 of the people I wanted to employ in peer worker positions because of their criminal records.
Working with Children checks, however, use a different process. They automatically disqualify people based on certain offences which can and definitely do, in practice, include drug offences. The decision about whether a person passes these background checks is made by someone who has no knowledge of the person, the context of their offences, and almost no information about the job the person is applying for.
Working with Children and Vulnerable People Checks also go far deeper than the Criminal Record Check, further back into your past and look at more systems.
I deliberately referred to family violence cases earlier because of what they mean in relation to Working With Children and Vulnerable People Checks. For many peer worker applicants, especially Aboriginal people and women with histories of family violence and child removal, even where you were the victim, you have far less chance of passing a Working With Children or Vulnerable People Check and therefore far less chance of being employed as a peer worker.
Even the idea of “peer” gets diluted. Many employers don’t particularly want to take the “risk” of employing people like us. Instead of changing the system, organisations change the definition of a peer. They hire people who use the kinds of drugs that are less likely to get you arrested, or people who used drugs a long time ago, even people who have never used drugs – for example, family and friends of people who have used drugs.
The people best placed to do this work, people who inject drugs, people who are currently connected to communities of people at risk of hepatitis B and C; we are systematically excluded.
As individuals, are we going to challenge this exclusion? Of course not. How would we prove discrimination is the reason we weren’t hired for a peer worker job that should employ someone with lived-living experience of viral hepatitis and injecting drug use?
We can’t prove it. No one would believe us. Stigma tells us we don’t deserve better. We don’t believe we have the right to push back, or we don’t know how, or we don’t have the support and the resources to do it.
Stigma hidden behind good intentions
Then there are other complications. Stigma doesn’t always look obviously like stigma. It looks like concern. For public safety. Or protecting children. When you are a peer worker, people’s beliefs about you and your practices aren’t presented to you. Your colleagues go to your manager to express their “concerns”.
Your colleagues tell your manager they’re worried about you, that you didn’t seem like yourself the other day, that maybe you were “drug affected” at work, another undefined and stigmatising term.
This is how stigma works. It hides inside acceptable concerns. It creates symbolic fears and then uses law to back those fears up.It tells us we’re dangerous. That we’re not capable. That we’re untrustworthy. But it doesn’t always tell us to our faces.
The result is a population, people who inject drugs, who are:
criminalised
excluded
routinely stigmatised
prevented from contributing to our communities, even in the exact roles where we have the most to offer.
And disempowered from being able to respond to the stigma that affects us.
Many of the systems that could offer recourse, legal appeals, workplace complaints, privacy protections—are inaccessible to us, we don’t believe we have rights in the first place, or we actually don’t have rights. Take, for example, the Anti-Discrimination Act 1977 (NSW). Addiction is mentioned once in the Act providing a specific exception from antidiscrimination protections for ‘persons addicted to prohibited drugs’. What that means is that, in specific contexts, it is lawful to discriminate against people who are dependent on drugs. The laws and protections aren’t there to support and protect criminals like us.
What Can Be Done?
So what can we do? We need structural change led by our community.
We need genuine action to respond to stigma led by people who use drugs. Drug user organisations like AIVL and our state and territory members must be a resource for others and therefore must be resourced.
Reform employment processes to address the many barriers that keep us from employment, including in roles that are meant to be for us. There are many barriers, but one place to start is to take away the inclusion of drug related offences from the list of excludable offences in Working With Children and Vulnerable People checks.
This isn’t a new of unusual ideas, which means it is past time for Australia to have a National Human Rights Act. It needs to explicitly protect people who use drugs, not as impaired victims, but as people with rights, dignity, and agency.
Support real drug law reform that is informed by us and is not discretionary. Where there is discretion for police and others to decide when and how to apply laws, the people who are most marginalised will continue to be criminalised.
Lawyers, magistrates, politicians and policy makers should be trained to have a much better understanding of drugs, and how stigma and human rights affect us and others who are marginalised and criminalised.
Listen to us. Our experiences is valuable and our leadership is not optional—it’s essential.
Collateral Damage, or Purposeful Design?
People who use drugs are told we are collateral damage. That the harm we experience isn’t intended. That it’s just how the system works. But if these harms are predictable, and they keep happening, maybe it’s not collateral damage at all. Maybe the system is working exactly as intended.
We need to stop pretending stigma is invisible or unintentional. It’s baked into laws, policies and practices. And it will continue until we confront it, name it, and change it.