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. 

Simply having used prohibited drugs may be insufficient “lived experience,” if a person does not also have direct experience of prohibition enforcement. 

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 color, Indigenous people and many other marginalized 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 health care; 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.”

People who use various types of drugs do not necessarily mix much, nor necessarily share much in common.

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.

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 legalized, 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? 

This incomplete summary is intended to highlight the sheer diversity of what “lived experience” can mean. That should prompt some important reflections.

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. 

This incomplete summary is intended to highlight the sheer diversity of what “lived experience” can mean to a vast array of contrasting groups. And if we acknowledge that, it should prompt some important reflections.

First, is it vital we operate with awareness that inclusion of one or more people with “lived experience” is not a catch-all, when the experiences in question may differ substantially from those best-placed to lend knowledge and insight to the task at hand.

Second, far from undermining the value of representing lived experience, recognition of its diversity should cause us to redouble our efforts. When lived experiences are so diverse, it is only through inclusion of many different impacted people that we can hope to involve a meaningful range of experience, knowledge, values, beliefs and perspectives.

Third, the huge diversity of lived experiences may sometimes limit the range represented in a given project. And that raises challenging questions around the extent to which people from one group possess the knowledge, insight and empathy to adequately understand and represent the needs of another—the extent to which you “have to be one to know one.”  

“Nothing about us without us” begins with the inclusion of those most excluded.

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 organization seeking to legalize 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 color, 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.

Photograph by Davide Ragusa via Freerange Stock/Public Domain

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