Much of the language used to describe drug users is profoundly negative. People with Substance Use Disorder (SUD) are commonly referred to as drug abusers, addicts, junkies, etc. Colloquial use of the word “addict” implies a habitual user with inadequate willpower to stop using, when in reality, opioid addiction is a much more nuanced issue and ends up having very little to do with willpower. Similarly, the US AIDS Epidemic of the 1980s involved a cocktail of victimizing, inaccurate, and demeaning language to describe people living with HIV. Patients were commonly discriminated against, victimized, or shamed, impacting their willingness to seek out care. The similarities between the social responses to the two crises are striking. Language is a powerful tool for both empowerment and humiliation; it can sometimes mean the difference between life and death. But what can we learn from the AIDS Epidemic, and how are similar themes coming into play in the modern-day Opioid Crisis? Since the lexicon of a community is so intricately tied to identity, using vocabulary that supports the identities of the people about whom we communicate is critical; that includes the scientific, journalistic, support group, and the affected communities. In doing so, those affected by SUD will feel more empowered to seek out help. Voluntary participation in rehab programs provides the best chance of preventing relapse, so non-derogatory language is the first step in ensuring that people do so. The objective of each of the aforementioned communities must focus on saving lives in a productive and sustainable way: not through intimidation, but through support. Changing the language surrounding opioid addiction has the potential to increase the number of patients voluntarily seeking treatment and encourage public support for rehabilitative as opposed to punitive responses.
Turning back the clock, the AIDS Epidemic was not really an epidemic of AIDS. The transmissible virus itself is called HIV, and AIDS can sometimes be a consequence of that virus. The virus can remain dormant in patients for years before any symptoms manifest and the patient develops AIDS. At the time, in the early and mid-1980’s, different communities had different ideas of what terminology should be used in the context of the disease. This led to the spread of misinformation by scientists and journalists alike.
The only link between cases for the first few years of study was that the patients were men who had sex with men. This led to the initial term for the mysterious ailment, Gay-Related Immune Deficiency (GRID). But, as Randy Shilts so astutely noted in his journalistic novel And the Band Played On, “Nature rarely respects such artificial divisions among people.” The initial misunderstanding in the science community, that the link was not sexuality but rather sexual practices, led to a good deal of misinformation disseminated by reputable sources. Clarifying the distinction could’ve led to an earlier realization that HIV was a sexually transmitted (and not gay-exclusive) disease. Concurrently, many leaders in the gay community advocated for a new dictionary called AIDSpeak where, for example, “semen” would instead be referred to as “bodily fluids.” Even though this language was more palatable for broader audiences, the connotations of bodily fluids led people to believe that HIV was much more transmissible than it actually was, sparking mass panic once the media eventually started to pay attention. A recent study investigates treatment and people-descriptors in all scientific abstracts presented at the International AIDS Conference over a 25-year period. Over time, a decrease in terms referring to people as “victims” or “carriers” is observed, substituted for more accurate terms such as “people with HIV” and “HIV patient.” Not only are these terms more precise, but they’re also less derogatory. America has yet to note the parallel subtleties in drug addiction. For instance, it’s becoming increasingly important to refer to addiction as substance use disorder because the connotations of words make a difference. Issues can be discussed with less bias when the language used to talk about them has less inherent bias in the first place. For example, you might feel less sympathy for an “addict” than for someone affected by a disorder.
In 2015, for an assignment, I investigated the scientific study of madness across the centuries. In my search, I found associations between gayness and madness: gayness and vice. Fortunately, the evolution of scientific understanding has moved past this, but these papers remind me that I was not always accepted, even by science. My queerness was not only an abnormality but a disease, and I imagine the clashes between these two communities made it difficult to find oneself as a queer scientist. The prime example is Alan Turing, a scientist at odds with his own identity. Turing, sentenced to chemical castration after being convicted of gross indecency (having a sexual relationship with a man), eventually died from what was believed to be a suicide. He believed there was something wrong with him, likely in part due to this vicious description of his identity, and died deep in a depression.
The prevalence of demeaning vocabulary in sources like scientific reports leak into journalism and propagate through mainstream culture, which can induce self-stigma and shame. More often than not it can lead to depression, increasing the prevalence of mental illness and dissuading those affected from seeking help even further. In the words of P. W. Corrigan, “A major difference between mental illness and SUD stigma is that the latter is legally and socially sanctioned.” Opposition to clean needle exchanges and other harm reduction strategies are remnants from the War on Drugs that peaked in the 1980s under President Reagan. DARE programs, while educating children about and dissuading them from drug use, also associated drug use with criminality. This follows since recreational drug use is criminalized in almost all instances. Unfortunately, the criminalization of drug use leaves many users with no options. Seeking help for addiction, clinically defined as a brain disease, can result in going to jail where drug use abounds, thus continuing the cycle. A National Academy of Science (NAS) study on SUD stigma concludes that “American children learn at a young age that addicts are violent.” Everything from school programs to popular media seems to equate drug use with criminals with moral corruption. The truth is, regardless of how individuals become addicted, the only way to prevent the abominable pain of withdrawal is to continue using. Addicts’ brains are nearly incapable of functioning without the drug. Once the brain has become addicted, the issue no longer lies in poor judgment or morals. It is a disease, and it should be treated as such.
But misinformation, miseducation, and stigma tend to prevail when it comes to broader society. The NAS report referred to in Corrigan’s piece highlights the relative lack of research on SUD stigma as compared to mental illness stigma. The lack of research itself is indicative of a greater bias against SUD within the science community. As with the AIDS Epidemic, scientists were reluctant to study these vital areas due to prejudice. The study also found that “Endorsement of the opioid stigma corresponds with greater support for punitive policies towards those who use the drug,” and "adolescents addicted to opioids who endorse the stigma are less likely to seek out care." In all likelihood, the individuals’ self-stigma convinced them that they are undeserving of treatment since addiction is associated with criminality and weakness. That very thought ends up costing tens of thousands of lives every year. The sad truth is that "only about 25% of people with SUDs ever participate in any care," and many are still doomed to relapse.
The broader scientific community, try as they might to communicate objectively, remain biased simply by their lexis. Scientific papers, as texts of this particular group, are "representative of the values, needs, and practices of the community that produces them.” When there exists a certain consensus on terminology, such as referring to the disease as GRID or referring to people with SUD as addicts, scientists are forced to choose their allegiance. Why should it be this way? Why can’t the scientifically correct term also be an empowering term? Results from the International AIDS Conference (IAC) survey show this exact shift over the course of 25 years. The push toward adopting “medically accurate, ‘person-first’ language” was as prevalent during the AIDS epidemic as it is in the Opioid Crisis, at least among experts. Dr. Sarah Wakeman is a leading proponent of this idea in the context of the opioid crisis. She explains why language is so important, citing the fact that “the use of ‘abuse’ and ‘abuser’ has been shown to increase stigma even among highly trained clinicians, who recommend more punitive treatment when an individual is described that way.”
Language is fundamental to influencing self-perception and behavior. Many programs have already been established to tackle the US Opioid Crisis. In particular, statewide efforts have resulted in grants for progressive treatment programs. The Opioid Task Force, whose headquarters lies in Franklin County, MA, is one such organization. Their mission is to “implement and promote an array of prevention, intervention, treatment, and recovery strategies.” But, as witnessed by a field trip to the site, the forefront obstacle almost always involves the lack of participants. “But think about Alcoholics Anonymous. It all started with a few guys in a room,” said one of the executive board members. Despite Massachusetts having over 2.5 times the national death rate for opioid-related deaths, the comprehensive program has serviced under 100 people in total. Lack of voluntary participation in treatment is a layered issue involving criminalization, fear-mongering, and stigma. Changing the cultural attitude towards drug use involves a shift in language from demeaning to empowering. Then and only then can individuals affected by SUD really stand a chance against this disease.
An almost greater issue lies in the stigma surrounding medically assisted treatment. Some people, including people with SUD, consider the treatment an addictive substitute for the former, or a legal opiate in exchange for an illegal one. In the words of the great Dr. Wakeman, “Methadone and buprenorphine are lifesaving, effective medications for opioid use disorder...Taking a medication to manage an illness is the hallmark of chronic disease treatment. Individuals taking medication to successfully treat addiction are physically dependent, just as someone taking insulin for diabetes requires a daily shot to be able to function normally.” We as a society need to work towards viewing addiction as a brain disease, and not as a character flaw. Politically, we need to treat it primarily as a public health crisis. This can only be accomplished through first communicating about substance use disorder in a factually accurate and emotionally articulate manner. By establishing a standard, person-first, non-derogatory lexis surrounding the Opioid Crisis in all these communities, we’re one huge step closer to getting people with SUD the support they deserve.
This essay was a finalist for RIT's Stan McKenzie Prize