How can we apply human rights to the terrain of drugs policy when people who use drugs are so often constituted as less than human?
How are people treated for hepatitis C to enjoy the improved health and wellbeing promised by cure when they continue to experience stigma, discrimination and other ‘afterlives’ of the virus?
These are two of the questions posed by GLaD researchers at the recent conference of The Australian Sociological Association (TASA), themed ‘Social Challenges, Social Changes’ and held earlier this month at the University of Melbourne. Program lead Kate Seear and project officer Dion Kagan both presented recent project findings as part of the conference’s health sociology thematic group stream.
The usefulness of human rights frameworks for drug policy reform – a question that is arguably at the heart of current international debates about reform – was tackled by Kate in a paper titled ‘Drugs, human rights and the making of “the human”’. Champions of human rights often argue that rights frameworks can protect people against the arbitrary exercise of state power. But there is a tension between human rights and those that society views as ‘less than human’, including women, LGBTQI+ people, and people who use drugs. Human rights frameworks have not always helped protect these populations in the past. Kate argued that using human rights frameworks to ‘restore volition and dignity’ to people who use drugs may be a mechanism by which the state can simply reinforce narrow assumptions about what constitutes ‘the human’.
But rather than rejecting human rights entirely, Kate’s paper explored the possibility that drugs and drug practices may themselves have the potential to expand human rights processes. She drew on theoretical ideas about the making and re-making of ‘habits’ and argued that if human rights are made and sustained by habits, these realities can be remade in more generous ways.
The paper comes out of Kate’s recent work with Sean Mulcahy on the project ‘A world-first ‘post–human rights’ framework for drug policy: Improving social, economic and health outcomes’, which takes a ‘post-human’ approach to rights. This approach starts from the important recognition that human rights are not ‘neutral’ and ‘universal’, as is often claimed, and have not always protected the interests of those who fail to fit normative ideals of the ‘human’.
At another session titled ‘Experiences of health and illness’, Dion Kagan grappled with another crucial tension regarding marginalised populations – one in which biomedical models promise an end to chronic illness, but people’s lived experiences after treatment suggest otherwise. Dion’s paper drew on recent findings from the GLaD project ‘Addressing hepatitis C–related legal, policy and practice discrimination in a post-cure world’ – specifically from a recent stage of interviews with people who have undergone treatment for hepatitis C with new generation treatments called direct-actiing antivirals.
In these interviews, we noted that while treatment promised social benefits to individuals, many of our participants continued to experience hepatitis C-related stigma and discrimination beyond the point of cure. Rather than delivering a neat termination of hepatitis C, many people’s post-cure experiences involved ‘afterlives’ of the virus. Put another way, while biomedical models, such as the hepatitis C cascade of care, tend to represent cure as an endpoint, post-cure lived experience indicates that cure may not always confer the tidy ending it promises. This complicates a neat binary of ‘infected’ or ‘cured’ subjects of hepatitis C.
Like those offered in Kate’s paper, the findings Dion presented at TASA are an example of a dominant framework (the biomedical and policy construct of cure-as-ending) that comes into tension with the lived experience of a marginalised group (people affected by hepatitis C, including people who inject drugs). Both papers suggest the need to attend more closely to the experiences and needs of these groups. For people treated for hepatitis C, the unique needs of post-cure lives only become more urgent in an era of viral elimination, as the cohort of people cured of the virus continues to grow. For people who use drugs, human rights are only useful as frameworks for drug policy reform if they do not re-inscribe or reinforce normative and highly value-laden ways of being ‘properly’ human, and instead account for diverse experiences and needs.
Both papers are currently being developed for publication and we hope to share them in early 2023. Keep an eye on the GLaD Twitter account for more updates.