Policymakers frequently fail to listen to those they serve, making it impossible to understand their needs. ‘Nothing about us without us’ has long been a principle of the drug policy reform and harm reduction movements – and rightly so. In recent years, it has been good to see more agencies and institutions than before recognise this basic omission, and begin inviting people with ‘lived experience’ to participate in policy development, research and service delivery.
Clearly, however, there are risks of tokenism or highly selective invitations here, including among organisations purporting to be peer-led. And this raises nuanced issues which are worthy of exploration. In the drug field, what should ‘lived experience’ actually mean?
It could mean the person has at some point used psychoactive drugs regularly. The trouble is, that’s basically all of us. But while use of regulated drugs like alcohol or nicotine would be a fitting – and desirable – qualification for involvements in those areas, most of us would consider it inadequate as ‘lived experience’ for work around state-banned drugs.
INSUFFICIENT LIVED EXPERIENCE
We would point out that lived experience of legal drug use does not equate to that of illegal drug use. Though there is no obvious distinction between state-approved and prohibited drugs in terms of inherent risks, the difference concerns the impact of prohibition itself.
But that, in turn, is why simply having used prohibited drugs may be insufficient ‘lived experience’, if a person does not also have direct experience of prohibition enforcement.
Many white and wealthier drug users, in particular, do not. Because across the world, the drug war has – from its very inception – strategically targeted poor communities, people of colour, Indigenous people and many other marginalised groups.
To take one of countless global examples, a Māori New Zealander who uses drugs is far likelier than their white counterpart to have directly experienced any number of harms caused by prohibition enforcement. These include being frequently stopped and searched; being raided, arrested and incarcerated; being threatened with losing their children or their home; being denied employment or healthcare; and being subjected to forced treatment.
These human rights abuses are not universal experiences among people using prohibited drugs, but in many contexts they should be considered a necessary component of ‘lived experience’.
Drug use itself is also, obviously, far from a homogenous experience. Prohibited drugs range from depressants to stimulants, psychedelics and more. Moreover, people who use various types of drugs do not necessarily mix much, nor necessarily share much in common.
DRUG ELITISM
These differences are underlined by forms of ‘drug elitism’. Some who use cannabis or psilocybin mushrooms portray their ‘natural’ drugs as better than synthetic substances. Some who enjoy MDMA or LSD call for their ‘non-addictive’ drugs to be legalised, but draw the line at methamphetamine or heroin because of the potential for dependence. Some who inject steroids to increase muscle mass may resent being associated with people who inject other drugs. The list goes on.
Lived experiences of drug use often relate to very specific contexts. People who use prohibited drugs to self-medicate conditions like MS, ADHD, epilepsy or autism may have profoundly different experiences from others. People who use prohibited drugs such as coca leaves, kava or ayahuasca to engage in cultural or religious practices will have quite different motivations and experiences again.
Even among people using the same drug in the same culture, the nature of a personal relationship with that drug can vary dramatically. Can someone who has only ever used recreationally adequately understand a person whose use has involved a long-term struggle around their consumption and associated life impacts?
LIVED AND LIVING
Yet another distinction is between ‘lived’ and ‘living’ experience. To what extent, for instance, can a person who identifies as having experienced addiction, and who now self-describes as ‘clean’, meaningfully inform peer-led services for people currently using drugs?
Some (though by no means all) who refer to themselves as ‘clean’ can be evangelical in their belief that the only way people can get help is if they quit drugs. As peers, they would then approach policy development and service delivery quite differently to another person with lived experience, who believes in supporting ongoing drug use through harm reduction. In all walks of life, we all run the risk of projecting our own experiences and personal solutions onto others.
These thoughts should all factor into decisions about who should be considered ‘peers’ in different contexts; whom they represent, and importantly, whom they might struggle to represent. An organisation seeking to legalise and regulate drugs, for instance, should certainly seek peers with experience not only of prohibited drug use, but also of the ongoing impacts of prohibition enforcement.
All of the diverse groups of people who use drugs need and deserve to be heard and represented. But we believe that people who have suffered most under the drug war – primarily people of colour, Indigenous people, people with experiences of poverty, incarceration and chronic unmet needs – should be first to the table.
‘Nothing about us without us’ begins with the inclusion of those most excluded.
Dr Julian Buchanan was a pioneer of 1980s harm reduction in Merseyside. Now a retired professor in New Zealand, he helps to lead Harm Reduction Coalition Aotearoa (HRCA)
Dr Oscar Graham is an early-career biomedical science researcher based in New Zealand. He has recently become involved with local drug policy reform organisations and serves as the secretary for HRCA.
This article was originally published by Filter, an online magazine covering drug use, drug policy and human rights through a harm reduction lens (filtermag.org). Follow Filter on Bluesky, X or Facebook, and sign up for its newsletter.