After Macalester College professor Amy Sullivan discovered her teenage daughter had an opioid use disorder, she embarked on a complex voyage of discovery. Up to this point, her career centered around the history of medicine, women’s history, and the history of childhood — “and then there in my own home was this problem I had not seen or ever expected. So, I was shocked.”
To attempt to understand more about how opioid use had become so common, along with Minnesota’s long history of leadership in the addiction and recovery fields, Sullivan did what she knew well: read, researched, and recorded oral histories. She interviewed nearly 60 people with connections to the opioid epidemic. These narratives, woven with her own story over several years, culminated in the book “Opioid Reckoning: Love, Loss, and Redemption in the Rehab State” (University of Minnesota Press, 2021), which was a Minnesota Book Award finalist.
We hosted a Changemakers Alliance (CALL) conversation with Sullivan, enabling members to ask questions and share their own stories, which fueled the stories in this magazine. This is excerpted from that conversation, in Sullivan’s voice.
There is such intense stigma around drug use. It is seen as a moral failing, even though we know addiction itself is a chronic brain disorder.
We should not use the word “addict” anymore. It is like calling a person with cancer a “cancer.” I tend towards using more medical words like “substance use disorders.” You can have an opioid addiction, but there is so much stigma that is built in with that word “addict.”
Another glaring but unintentional stigma is when you hear families say, “We were just a normal family,” suggesting that people who use illegal drugs are somehow lesser or not “normal.” You hear others (think D.A.R.E program) suggest, “You just need to have dinner with your kids every night and get them into sports,” as if that will solve a drug use disorder.
The external pressure on parents, that we are somehow all-powerful beings who can control everything our children encounter in the world, is also stigmatizing for struggling families — they feel judged, like they caused their child’s problem somehow.
When people say, “They love their drugs so much that they are willing to be homeless,” that is dismissive of the person’s traumas and experiences that led them to that tragic situation.
Morality also plays into institutional stigma and treatment models. If the 12-step program being offered does not help you, you are made to feel intense pressure for not working it hard enough.
Stigma comes from the medical field as well. I learned of a doctor who was prescribing suboxone, a drug approved as a treatment option that has been very successful for a lot of people. A young man named Spencer, who was finally on the drug after struggling for over a decade, had a positive drug screen for opioids. He was kicked out of the program, which had a no-relapse policy, and told to come back in a year. Spencer died of an overdose before that happened. I heard so many examples of that kind of life-threatening stigma.
When someone has lupus or cancer, we do not say they are failing at that disease if they go out of remission or need more chemo. Yet when someone has a relapse, suddenly they are no longer successful in recovery, even though it is the same type of thing. It is a substance use disorder. It is a disease. It is not a personal failing.
In the 1960s, Marie Nyswander discovered that methadone, the painkiller, could be used to help people stabilize from chaotic heroin addictions. This was a problem in the 1960s in New York City and Philadelphia, and primarily in communities of color. So methadone treatment became associated with communities of color. Most white people got their treatment by going away to more expensive, secluded places, like the Hazelden Betty Ford Foundation center. Methadone as a treatment became racialized and stigmatized — for people who were considered to not have moral strength.
The shock and the outrage of this opioid epidemic, for so many, is that white suburban kids are dying. Overdose death rates have been high in BIPOC communities for decades, but we did not pay attention to the epidemic until now. [According to the National Council for Mental Wellbeing, high rates of trauma, and low rates of public safety support, have long impacted BIPOC communities.]
We need to take the models that have been siloed from each other and combine them. The medical model is separated from the 12-step model. One sees itself as scientific and says “just follow the doctor’s orders,” and the other says “just listen to your higher power and keep coming back and don’t use anything ever again.” We have these two extremes. We also have harm reduction, which came up in the 1980s as a result of the HIV/AIDS epidemic — another model that is siloed.
This also speaks to relationships with police and authority. If the thing that is illegal could get you in more trouble than it will a white kid, you or your family is not going to reach out because you are terrified of what will happen. You will end up in prison. You might not have the money to pay your way out.
We need an equitable system that addresses the individual issues. I think housing that is not contingent on sobriety needs to be a priority. People have to have housing to get better, and their family needs to know that they are safe.
Consider the example of drug court. It has had good successes, and it has good intentions, but it is based on the carceral model — you slip up and then you are in jail. One time when I was visiting my former son-in-law in a treatment facility, he said half the guys did not want to be there. They were only there because they did not want to go to jail. That might not be the best place for someone who wants to get better.
We need a combination of treatment centers. We need to pull people together and say, “You have created something for those who were not being cared for in your community; how can we all come together?”
We need a think tank that allows these different models to express themselves.
We need to pull together policymakers, to have access to dollars, and grassroots community members.
We have to find ways to engage the broader public and policy makers in these conversations.
As is the case with oral histories, the more narratives I recorded, the more complex the picture became. The vast, interlocking nature of problems associated with drug use regularly overwhelmed me, but with each interview, I gained a more nuanced understanding of how the opioid epidemic has touched so many aspects of life in the twenty-first century. Some insights presented themselves to me so many times that I saw a painful, almost never-ending pattern emerge:
This cycle is not only an internal emotional one shared by individuals and families, it is also embedded in institutions, laws, and protocols meant to “help” people with substance use disorders.
It is daunting. People do not want methadone clinics around their neighborhoods. So, what can we do to change those conversations?
Paula DeSanto had been working to create person-centered mental health services for her entire career and felt discouraged about how little positive change had occurred in substance use disorder treatment, especially when contrasted with how the field of mental health had evolved. “Mental health has made enormous strides toward moving toward a patient-led recovery movement. … But with drug and alcohol we were still stuck in the 1950s. I was feeling pretty discouraged about … the revolving door … a continuous loop, barriers to access, unwelcoming, one size fits all, blaming the family. … I saw it firsthand, I heard about it from clients over and over: How long are we going to keep blaming the client for the system’s failure?
Paula wanted to build in much more substance use disorder-related scientific and educational information for clients about brain development, neuroplasticity, and trauma impacts on addiction.
She decided to start her own model that she named the Minnesota Alternatives. It focused on one central question: What is the client’s unique vision for their definition of recovery and what could the team offer to help the client figure out how to get there?
This was a very different culture than traditional treatment settings, where counselors often function as an extension of probation, and where clients often work to hide their realities for fear of punishment or fear of getting kicked out of a program. “Probation and addiction treatment are in bed together. What’s with that? That’s just absurd how that developed.” I was impressed with the flexibility and trust in what she envisioned.