Language and Stigma
In the fall of 2000, I was organizing a statewide convening of LGBT recovery advocates in Albany, N.Y. We met over a weekend for a series of teach-ins, talking point sessions and role-plays to prepare everyone for agency and legislative advocacy visits on at the State Capitol on Monday. This was early in the recovery advocacy movement and strategies to dismantle stigma were few, so getting 25 people from around the state to come forward as self-disclosed LGBT people in recovery representing diverse racial and ethnic groups was an astounding feat. One goal of the weekend’s activities was to boost courage and confidence in the power of story and voice. In a session on storytelling-as-advocacy, we learned new skills in using person-centered and non-stigmatizing language and made a group commitment to doing so.
By Monday morning, everyone was pumped and ready. Each appointment went as rehearsed: introductions from everyone, followed by rotating and selective advocate stories – intentionally linked to the advocacy bullets on our fact sheet, followed by our “asks.” After a few successful visits, our group of budding advocates was riding high with confidence and the great feeling you get when you are engaged in advocacy.
This wave of high energy came to a crashing halt during a mid-afternoon visit with a state legislator’s office. We met with a young staffer, who informed us that the legislator was running late and the staffer would be taking the meeting until the legislator arrived. For the first 20 minutes, we ran through the normal drill. When the legislator entered the room, the staffer stood up from her notetaking and, in a clearly awkward moment, announced, “This is the group of gay abusers.” The room fell completely silent, gutted of the energy that was crackling just previously. It was as if my entire group, myself included, had received a sucker punch. Although I managed to jump in and smooth out a tense moment, the damage to my fledgling group was done.
Later, during our debrief, the many successes of the day were overshadowed by the staffer’s unintentional but stinging barb. During the weekend’s activities, we had worked with the advocates to tell their stories appropriately, but pointedly. Many had summoned the courage to talk about their addiction and recovery, emphasizing the trauma and abuse they suffered as queer children and adolescents. Being referred to as abusers left them feeling unraveled and shamed, questioning the wisdom of speaking publicly with such a degree of vulnerability. As we processed this, reaffirming in ourselves and each other the power of our stories to change lives, we went back to our previous commitment to consciously using non-stigmatizing language. We vowed that we would strike any reference to the term substance abuse from our vocabulary in any personal or collective action moving forward.
In the 20 years between then and now, the addiction field has made great advancements in addressing addiction as a chronic brain disease, understanding the role of trauma, increasing use of medication-assisted treatment and implementing recovery-oriented systems of care. Throughout each breakthrough and advancement, stigma has continually stymied progress. A major challenge in addressing addiction has been undoing old attitudes that assume moral failing and assign blame and shame on those who have been affected. Underlying these negative attitudes is the language we use in and out of the addiction field. Central to this language is the word abuse. The question remains: How can we dismantle stigma when it is reinforced by the language we use?
In 2010, Drs. John Kelly and Cassandra Westerhoff published a study that indicated the commonly used term substance abuser – as opposed to a person with a substance use disorder – indicated a perpetuation of stigmatizing attitudes among treatment professionals, thus contributing to poor outcomes. Since that time, Kelly, a professor at Harvard Medical School and founder of the Recovery Research Institute, has spearheaded a number of related research initiatives. The established and emerging research confirms what we already know: that the words we use matter and it is time to change our terminology about addiction. So why is this so difficult and why is the process so slow?
Not long after my experience in Albany in 2000, I came across an article by Bob Curley written in 2001. Citing the visionary leadership of William White, the article focused on the need to drop outdated, harmful and stigmatizing language – especially the term substance abuse. Curley also called for a renaming of federal institutions that have the word abuse in their names: National Institute on Drug Abuse (NIDA), National Institute on Alcohol Abuse and Alcoholism (NIAAA), Substance Abuse and Mental Health Services Administration (SAMHSA) and its Centers. Since then, there have been numerous discussions about how this strategy would complement grassroots advocacy with top-down policymaking. And now Dr. Kelly – building upon the research that he has steadily architected – is moving the dial forward through a position statement and accompanying infographic, issued by the Society of Behavioral Medicine (SBM), calling for change in the naming of our federal institutions serving addiction. Being clear that this is only the beginning, as changing federal names requires an act of Congress, the National Council proudly signed on at the beginning of this initiative.
One thing I have learned in my career, my recovery and my life is that change is difficult and is sustained through patience and practice. Changing words, language and names will not end stigma but it will be a useful tool in getting there. Until we dismantle and eradicate stigma, everyone loses. I respectfully decline ever being referred to again as a substance abuser and I extend that decline to everyone who has been affected.