On the second floor of a building in downtown Boston, a group of women are watching “Let’s Make A Deal” on a flat screen TV. They’re in the women’s center of a daytime homeless shelter, a small room lined with vinyl chairs and well-worn carpeting. Some women are working on the computers while others sleep in chairs, their belongings piled up at their feet. The women come here to feel safe, to get away from the chaos on the street below.
“It’s rough out there,” Regina told me. And she would know. A 42-year-old heroin addict who has struggled to get sober for over 15 years, Regina says she has been in treatment at least twenty times. “Detox, methadone, Suboxone, halfway houses, 30-day programs… you name it, I’ve tried it,” she said. Despite her best efforts, Regina can’t seem to kick her habit. What she found most effective in helping her stay sober were the two and a half years she was incarcerated. “That’s my longest period of sobriety,” she admitted.
Regina’s story is not unique. In fact, her story has become so common that politicians all over Massachusetts are talking about opiate addiction. A new billboard campaign, funded by the state, displays black-and-white photos of three unsmiling people alongside the words “End The StigMA of Addiction.”
It refers to the state’s burgeoning opioid addiction epidemic. In 2014, there were 57% more accidental opioid-related overdose deaths in Massachusetts than just two years prior. This has left the state clamoring for solutions.
As an addict in recovery, I’m excited to see people talking about a disease that has long been stigmatized. But I’ve noticed that the loudest voices are often (white) parents who have lost children to addiction.
Most of these parents have never been addicts themselves — and may have their own motivations for getting involved, like saving face. Their grief is fueling their passion. Notably, few of today’s activists were present when heroin addiction was affiliated more with people of color. As suburban parents take to their soapboxes, they are finding an audience among officials in the highest positions of government. They are being heard, and solutions are being proposed.
For example, in Gloucester, Massachusetts, the police department has declared an end to the criminalization of drug use in their town. They are instead inviting drug users to show up at the police station and placing them in treatment. It’s a stark contrast to how drug users have been treated by law enforcement in the past. But the question remains: as solutions are being proposed at a rapid rate, are they necessarily effective ones?
What can police officers and white suburban parents learn from the mistakes made during the ineffective War on Drugs? How can we avoid history repeating itself? And what can those of us in recovery have to teach the so-called “experts” about treating addiction?
MMassachusetts Governor Charlie Baker wants his constituents to know that he’s taking the heroin crisis in his state seriously.
So seriously, in fact, that he drafted a bill and pushed it through so quickly that, according to Whitney Taylor, the Political Director of the Massachusetts ACLU, advocates didn’t even have time to organize.
Governor’s Baker bill has several provisions intended to address education, prevention, and treatment. The bill seeks to expand education about opiates to physicians, parents, and coaches. It also limits first-time prescriptions of opiate pain relievers to 72 hours’ worth of medication.
But one of the most noteworthy — and controversial — provisions is that it “allows clinicians to retain a patient for 72 hours so they can attempt to engage the patient in voluntary treatment or seek court ordered involuntary treatment.”
This means that if a drug user seeks medical care, that provider can choose to hold the person against their will for three whole days. This not only crosses a slippery slope with regards to civil liberties, it could be medically dangerous. Once a person’s 72-hour hold begins, Taylor explained, it starts a medical detox. And if the person chooses not to seek treatment after three days, their tolerance will decrease. The provision could, perversely, increase the likelihood of overdose.
The threat of being held may also discourage active drug users from seeking desperately needed medical care — which would pose a particular risk for folks with secondary illnesses like HIV. Jennifer Elkins, a 26-year-old woman who has been addicted to heroin for three years, says that when she got an abscess on her arm from shooting heroin, she ignored it for as long as she could.
“It’s embarrassing to go into the hospital and tell them you’re a drug addict,” she said. If there was a chance that she would be forced to stay when she didn’t want to, she may have waited even longer to seek medical care.
I also had a lot of medical issues that came with my drug use, including chronic, severe sinus infections from snorting cocaine. I avoided going to the doctor for a long time because I was afraid if my doctor knew I was using drugs, I might actually have to stop using them — and at that time, I wasn’t ready. If I thought I could actually be forced into treatment for seeking care from my doctor, I never would have gone.
Lydia Lopez, who is in recovery and works for an organization that lobbies for substance abuse reform in Massachusetts, is cynical about the supporters of the bill, especially from parent-led groups like Learn to Cope. “Are you for this bill because it’s going to help people — or because it’s going to ease a mother’s anxiety for three days?” asked Lopez, who is using a pseudonym to avoid speaking on behalf of her workplace.
Joanne Peterson, Learn to Cope’s executive director, told me over the phone that “when someone is presenting at a hospital, I do think it would be nice for a doctor to be able to hold them, as long as it isn’t backing up the emergency room.” However, despite testifying for the bill, she clarified that she can’t say she “totally agrees with it” until she sees how it works. (According to their website, Learn to Cope is funded by the Massachusetts Department of Public Health, but Peterson said that their funding has nothing to do with which bills or policies she and other members choose to support.)
GGovernor Baker has also put resources into thinking about the language of addiction. Should we be called addicts? Is the word “addict” demeaning? In the public eye, should we be considered criminals, or something much softer? Are we in control of our actions?
It’s worth noting that when addiction was perceived to affect communities of color, there were no hashtag movements like #StateWithoutStigMA.
“It’s obvious that a lot of policies, especially how people want to do stuff around CORI reform, are because of who it’s affecting now,” said Lopez, referring to the Criminal Offender Record Information. “Now that [addiction] is affecting their [white] communities, they want to do something about it.”
In other words, when addiction was seen as a problem that predominantly affected Black and brown communities, the response was to criminalize the issue and incarcerate those participating in it. Now that middle and upper class white families are affected, there’s a push to view the problem as a mental health one and not a criminal one. Many people in the Black community are so resentful of this sudden shift, said Lopez, that they don’t want to join the new movement.
I brought up the billboards on I-93 with Mike Johnson, who is in long-term recovery for opiates and alcohol. “What a perfect example of misguided activism,” he said. Johnson, who works at a Twelve Step-based treatment center and asked to use a pseudonym to avoid speaking on behalf of the center, is smart, quick, and a little verbose. He believes the push to destigmatize language is “not so much about addicts being stigmatized but about families trying to save face.”
The #StateWithoutStigMA campaign notes, “Many science and medical practitioners have concluded that addiction is a chronic, often relapsing disease of the brain.” To Johnson, the emphasis on brain disease offers “a way to separate the disease from the person. It’s easier to say, ‘My son has a brain disease,’ than it is to say, ‘My son makes bad decisions.’”
Another link on the #StateWithoutStigMA page takes you to a letter from Marylou Sudders, the Secretary of the Executive Office of Health and Human Services. “When we define someone with words such as “addict” and “junkie,” it dehumanizes the person and creates a powerful obstacle to seek treatment or to ask for help,” the letter reads. And this can be true for some people. Jennifer Elkins believes that when she feels like people are stereotyping her as an addict, it makes her want to use again. ”It makes us see ourselves as being as worthless as we already feel,” she said.
On the other hand, both Lopez and Johnson — and I — see the focus on brain disease and involuntary treatment as what’s actually dehumanizing.
Lopez thinks that, ironically, many activists stigmatize people who still use. They treat active users as incapable of rational thought. But, she said, “People in active addiction are smart, they’re creative.” If they weren’t, they wouldn’t be able to hustle money to get their fix on a daily basis. People in active addiction are masters at squeezing blood from a stone. And while they may not have the answers to questions about what they need to get sober yet (if they did, I assume they wouldn’t still be using), they do know what it is they aren’t getting.
Johnson believes that eliminating shame-based language is appropriate in some areas, but that shame can drive people to get well. “Shame can be a good thing,” he explained. “Sometimes shame is an appropriate response to the things we’ve done and provides the motivation needed to get better.”
I relate to this a lot. I ended up feeling really bad about the things I’d done while I was using, like stealing from an ex-employer or showing up to serve on a jury while intoxicated — which meant that I still had a conscience. My conscience ended up the catalyst for me to change everything about the way I was living my life. Taking responsibility for those actions, hard as it was, gave me the agency to make better decisions going forward.
This is the crux of the problem when non-addicts — parents and politicians and even doctors — drive the language around a disease they don’t have. The “brain disease” narrative tries to fit the messiness of addiction into a neat box where it just doesn’t belong. It’s quite possibly the only disease that you can’t fully understand unless you’ve been there. And, ultimately, “language policing is harmful,” said Johnson. “You don’t get to dictate what I call myself.”
It’s why I still choose to call myself an addict — I am an addict. The word “addict” describes more than just the way I use drugs — it also describes the way I experience the world. Reminding myself of that keeps me humble and keeps me from getting complacent about my recovery.
FForty-five minutes north of Boston, in the seaside town of Gloucester, the police department is trying something very different: they’re actively helping opiate users get into treatment.
This past June, Gloucester’s police chief Lenny Campanello launched the ANGEL Initiative. It allows any person struggling with addiction to go into the police station, with or without their drugs and paraphernalia, and not be arrested but instead helped into treatment. They are then matched with a volunteer “angel,” often someone in recovery themselves, who sits with the person seeking treatment during the intake process and treatment search.
The response to Chief Campanello’s vision’s was intense, leading him to found the Police Assisted Addiction and Recovery Initiative (PAARI) to help police departments across the country replicate Gloucester’s program. With their guidance, 41 police departments across nine states have replicated all or part of the initiative. The police departments span the country, from Maine to the West Coast.
Since the program launched in June 2015, there was only one overdose death in Gloucester for the remainder of the year, compared to four in the previous six months. John Rosenthal, the chariman of PAARI, says that 300 people are now in treatment that wouldn’t otherwise be. In addition, he says that comparing a three-month period in 2014 with 2015 shows a 30% reduction in ancillary crimes often associated with addiction, like breaking and entering, petty larceny, and shoplifting.
However, due to the shortage of treatment beds in the state of Massachusetts, PAARI has partnered with 58 treatment centers in 19 states to provide scholarships for clients who cannot afford their copays or do not have insurance. Since many states have a gap in available treatment beds, it will be interesting to see how effective this new program will be as it expands across the country.
Getting people into treatment — not forcing them into it, like Governor Baker’s bill seeks to do — is a good step. But Johnson stresses that all treatment is not created equal. He cautions that many treatment centers are looking for dollar signs — “they farm bodies and cycle them in and out, just looking to fill beds to turn a profit.”
This is something I’ve seen firsthand. There’s a reason that, when I decided to seek treatment for myself, I didn’t go to one of the many centers offering group therapy and psychiatric medication. I’d worked in those places as a social worker, and I’d seeing the revolving door of people cycling through, again and again.
And if I were an “expert” with the tools to teach other addicts how to get well, why was I not getting better myself? For me, the answer was trying something completely different, which I’m thankful to have had the privilege to try — a 12-step based program in another state, where all of the staff members were in recovery themselves. I stayed there four months, and entered sober living for six months after that.
It was the part about the staff being in recovery that ended up making all the difference in the world for me. In many state-run treatment centers, including the one I worked in, you cannot self-disclose your recovery status because you are supposed to remain neutral. But for me, Johnson, and many other people that I know, it was the ability to identify with someone else that helped me get sober.
In most recovery programs, the counselor is supposed to be a blank slate, a stoic person who just listens. But for me, that made them too easy to dismiss. It took someone telling me their story, that sounded an awful lot like mine, and telling me they got better for me to believe that I could, too.
None of this is to say that the way I got sober will work for everyone. We need many paths up the mountain for a diverse population of opiate users — such as harm reduction programs like methadone or buprenorphine maintenance, short-term programs, long-term programs, transitional programs, and 12-Step programs.
And as Whitney Taylor from ACLU points out, what works for a community like Gloucester may not work everywhere. “Gloucester is a certain type of community,” she said, referring to its predominantly white demographic and small-town feel. “Imagine this in communities where there aren’t good relationships between the police and the community.” Ultimately, law enforcement cannot be the solution to the opiate crisis, because in many places, they’re part of the problem.
SSo, what might effective solutions in Massachusetts — and nationwide — actually look like? I’m not sure anyone proposing the solutions really knows. But it starts by bringing people to the table who have actually been there.
“This recovery movement isn’t really about the people in recovery,” said Lopez. “If we’re not getting the people we’re talking about to the table, then it’s really not about us.” The adage “Nothing about us without us” is a common activist refrain, but not one that’s being practiced here.
This is easier said than done. Doctors are seen as experts, but if doctors really knew how to “cure” addiction, we’d all be fixed by now. Taylor noted that when she recently went to the State House, it was over five and a half hours before public testimony was heard. Elected officials, law enforcement officers, and medical providers are all given priority over members of the public. People who have lived through addiction aren’t considered experts; we’re just good for the motivational stories, for promotional billboards, but not for implementing solutions.
“The most important thing is that we can’t let the current crisis we’re in take us down a road that will be more difficult and cause more problems in the future,” Taylor cautioned. “Between the civil liberties issue of holding people and the gray area of coerced treatment being effective, we shouldn’t be so worried about this epidemic that we do something wrong.”
When asked what would help them the most in their quest to get sober, both Regina and Elkins had the same answer: the ability to access treatment beds when they need them.
Elkins says, “Addicts are people who were amazing at some point, and still can be.” I just hope the people in power slow down long enough to really consider whether or not their ideas are actually effective. Not all progress is good progress.
