Harm reduction is compassion, harm reduction is love: Louise’s story

This article was originally published in the Spring 2017 issue of Scalawag Magazine. You can read the original article that was published online here.

Beginning in the 1980s as a response to widespread drug abuse and to the AIDS epidemic, harm reduction tactics promoted public health by preventing diseases from spreading through shared needles. Harm reduction advocates drew inspiration from civil and human rights movements and the tactics of AIDS activist groups such as ACT UP. Many AIDS activists worked in the streets of cities like New York to promote syringe exchange access—trading dirty needles for clean ones—and agitating against the abstinence-only mindset that dominated drug treatment at that time.

These ideas and tactics, which focused on mitigating the damaging effects of drug abuse, soon spread throughout the country. Like their northern counterparts, Southern harm reduction advocates refused to wait for official policies to be passed before they acted to save lives and prevent the spread of disease. During the next 20 years, lawmakers in numerous states embraced harm reduction tactics, either out of necessity or because studies showed that syringe exchange programs slowed the spread of diseases like AIDS and Hepatitis C and did not increase drug use. New York deemed its syringe exchange program to be the “gold standard” of HIV prevention.

But despite evidence that it worked, harm reduction had its detractors. Leading the crusade were hardliners like North Carolina Sen. Jesse Helms, whose ultra-conservative rhetoric against needle exchange was imbued with moral condemnation. Already known for vitriolic remarks against homosexuals and for lobbying for legislation that shut down AIDS funding, Helms championed a bill in 1988 prohibiting the use of federal funds for syringe exchange programs. He implied that handing out clean needles was the moral equivalent to the dealer on the corner selling smack.

The result was almost no official support for harm reduction in the South, particularly in North Carolina, until the federal prohibition was lifted for the first time in 2009. In a region that is consistently ranked as one of the poorest in the country, Southern states continue to lag behind the rest of the country in public-health emergency preparedness, even as disease rates remain high. “Eight of the 10 states with the highest rates of new cases of HIV are in the South,” according to the Centers for Disease Control and Prevention.

Yet today, the number of syringe exchange programs is growing and Naloxone—a drug used to reverse heroin overdose—is becoming more and more available. This shift towards a harm reduction program reflects the desperation of communities across the country that are being ravaged by escalating opioid abuse.

In North Carolina alone, heroin deaths increased 554 percent between 2010 and 2014, and the mortality figures are expected to have risen again in 2015. Prescription opioids—synthetic medications such as Oxycontin that mimic the pain-relieving properties of opiates—are believed to be a risk factor for heroin use, according to the National Institutes of Health. Of the top 25 worst cities for opioid abuse, four are in North Carolina. The number one city is Wilmington.

Last summer, North Carolina became the latest state to legalize syringe exchange and made it easier to get Naloxone. Since the North Carolina Harm Reduction Coalition began distributing Naloxone kits in 2013, more than 5,500 overdoses have been reversed. These steps represent a symbolic victory for harm reduction advocates who envision a South unshackled from a culture that dismisses and shames drug users.

In particular, advocates of harm reduction have strategically targeted law enforcement and elected officials, many of them Republican, in recent years to talk to them about the public health benefits of harm reduction. As more and more police departments realize that they can’t arrest their way out of the War on Drugs, law enforcement officials have come on board to distribute Naloxone and to participate in the syringe exchange, leading some to wonder if the War on Drugs has turned a corner. Harm reduction advocates remain dubious about this optimistic perspective and believe the collateral damage of the Drug War may take decades to overcome, but they view the recent wave of laws legalizing syringe exchange as a step in the right direction.

This recent legislation is a welcome respite for these harm reduction advocates who have fought for the humane treatment of drug addicts over and against the hysteria of the 40-year War on Drugs. Risking arrest and possible relapse into drug use themselves, volunteers like Steve “Gator” Daniels and Louise Vincent worked outside of the law and with few resources to organize and run underground syringe exchanges and Naloxone distribution programs in North Carolina.

Louise and Steve represent the “medics” of the drug crisis, those who saw the carnage upfront, and they continue to focus on the humanity of those they serve. Their stories speak to the difficulties of overcoming addiction and the heartache caused by chaotic drug use. But they also give us hope that many users can make significant strides towards normalizing and reclaiming their lives, even if they don’t stick to full abstinence. In this way, Louise and Steve embody the harm reduction principle of meeting people “where they’re at.”


Louise’s story

Photo by Andrew Dye

Whatever causes people to use drugs in the face of negative consequences, I don’t know what it is. I don’t know if it’s disease, connection…I don’t have the brain for that. I don’t know what makes people do it. But I know that it’s more than just “I want to use drugs.” I know that I didn’t set out when I was seven, “You know, I think I want to disappoint everybody in my life and destroy my family and fucking get sick and lose my daughter.” I can look around in my life and every negative thing has come from either drugs or drug policy. Whatever it is, it’s not something that people choose.

I didn’t set out for this, and I wouldn’t wish it on anybody. The fact that we harm people even more when they’re in these vulnerable places and in these places where they desperately need love and they desperately need human compassion and empathy is unforgivable.

My world was drug-centered when I was young. If you’d said, “Do you have any hobbies?” I’d have said, “Yeah, I get high. That’s my hobby. Fuck you. I use drugs. I don’t have hobbies.” When I got older and I got involved in stuff and went to college and fell in love with the things I fell in love with and had passion about life, drugs took a backseat. It really did. My world wasn’t just drug-centered. I found some other things that I liked. When drugs started pushing up against those things, when my drug use started to wreck those things, I made decisions about my drug use. Then I was like, I don’t want to ruin these things for drugs and I could make decisions around it.

I went back to college and finished college and worked in traditional treatment and hated it. I admitted people into detox. Watched as people cycled through, listened to the other side of it. I had always been the person going to rehab. I only knew that side of it.

We have one acceptable narrative about recovery that doesn’t fit everyone. This idea of getting clean, staying clean, being 100 percent abstinent. You’re either all the way sick or all the way well. There’s no middle ground.

This is the message we have right now: “Half measures avail us nothing.” Which basically says if you don’t do it all the way, don’t even try. That’s a shitty message. That’s the message that says, “If you use, you’re going to jail and death and you might as well just go all out there and tear it up. People do it. I watch people do it everyday. They are in the program and they’re doing fine and then they use and they destroy their life in a week. That’s more than just drugs. That’s drugs and an attitude that there’s no point in even trying if you’re using.

You either learn to cope or you don’t. But that doesn’t mean that everybody that does will become abstinent. It just means that people learn how to deal with their drug problems in different ways.

Watching this in traditional treatment, I got more and more frustrated with my own life, and I relapsed at some point and I thought I had lost everything.

In order for me to get well, in order for me to get up off of that relapse where I wasn’t just killing myself, I had to find a different way to look at recovery or drug use and recovery. I could no longer use the 12-step version. I don’t have a problem with it. I think 12-step philosophy and harm reduction need to come together and find a way to work together. But for me, it didn’t work anymore. I had done everything they asked me to do. I had followed the rules in the book.

And I still relapsed.

I couldn’t buy it anymore. It didn’t make any scientific sense anyway, but it had worked for a while. But when it didn’t work and I was blamed, “Well, you didn’t do what the program asked of you.” But I did! I did do this, and I still used. Am I defective? What is wrong with me that I can’t do this?

There’s all these religious implications. If the problem is lack of God, then the solution must be God. Am I praying right? Am I not doing something right? No other issue in the world do we say…if I had cancer, you wouldn’t say, “The solution is you’re going to turn your will and care to God.” But that’s our solution for addiction. None of that was working for me anymore.

We had to have another place for people that weren’t ready to chew that up. For people that just weren’t there. If I don’t want to be 100 percent abstinent or if I need to be on medication-assisted treatment, if I need to take Methadone or Suboxone, there’s nothing wrong with that.(1) Being on Methadone maintenance or Suboxone isn’t the same as being drug-involved, in chaotic use with your life spiraling out of control.

I felt very strongly that if I had had the kind of support that would have been available had there been harm reduction programs, I wouldn’t have been in such a mess all by myself trying to figure it out.

Photo by Andrew Dye

I began searching for some answers that were different than what existed. I was trying to help myself. I wanted to figure out what was going on with me and with other people. I was watching everybody I loved and cared about die.

I was going to graduate school for public health. I was learning about syringe exchange programs. I got involved with the North Carolina Harm Reduction Coalition.(2)

When I first heard about harm reduction, I had an internal battle in my own heart because I grew up in the South and I was conditioned with all the same junk.

It was a real battle. Am I doing the right thing? Is giving syringes to people…is this okay?

I try to really talk to people about their concerns. This same question of “aren’t we enabling?” I try to remember that I struggled, too.

It’s harm reduction. We meet people where they are. I have to remember to meet people where they are as far as coming to accept harm reduction as well. It doesn’t just work one way. I have to remember that it took an experience, being in Atlanta in The Bluff, working in the most devastated community and it came to me all at once: this is exactly what we’re supposed to be doing. This is compassion. This is love.

There was no harm reduction in Greensboro. That sucked because I really thought it would work. [The] Harm Reduction Coalition was me and one other woman. I set out at that point to make harm reduction support real…in North Carolina and especially Greensboro. I’ve been working slowly to do that since then.

We operated underground for a long time here. I got arrested a couple of times for it. That sucked. All that a syringe exchange was when it was not legal was calling my phone number, me meeting you, me giving you syringes. Or through word of mouth, satellite exchanges and me giving people syringes to give to people who need them. This was just about loading up syringes and getting syringes to people and sharing health information and Naloxone.

We were giving out Naloxone before it was legal. This was saving people’s lives. We were watching it save people’s lives. We knew people needed Naloxone. I didn’t need a study to tell me that. I saw it right up close.

People would call us. We would run to where they were and give them Naloxone sometimes. That was crazy. We did lots of that. Me and my friend, he had this bright yellow car and we’d get a phone call. They would give them mouth-to-mouth resuscitation until we got there. Then we’d give them the Naloxone. If they were too far away, we would tell them to call 911. You’ve just got to.

Syringe exchange is one of the most well-studied public health programs there is. We know it works. We know it reduces disease and these motherfuckers, excuse me, dammit they’ve been letting these disease rates go sky high in the South.

Mike Pence, his state [Indiana], they just had an HIV outbreak and crisis. He didn’t want to have a syringe exchange, but he has a syringe exchange now. They had an outbreak of HIV, 136 people in a place that usually has two cases. What happened is that HIV got into the [intravenous]IV drug community. Boy, if that happens, it’s like Hepatitis C. We know that 75 percent of injection drug users have Hepatitis C.

Let that happen with HIV. We can’t have that. They opened up a syringe exchange with the most conservative people in government. They have to. They’re doing it because if they don’t, they’re responsible.

To be fiscally responsible, you have to do it. The cost of a syringe versus treating Hepatitis C and HIV: $600,000 last I checked. People with HIV are living full lives. Now we’re talking probably more than $600,000 per person. Then $100,000 for Hepatitis C. Huge cost for treatment. If we’re going to live in tertiary care where we just treat illness, we’ve got to do some prevention. They’re just at a place that they’re forced to. This isn’t because anybody wants to.

Human Rights Watch came and did a…human rights advocacy brief, and it talks about North Carolina’s failure to implement harm reduction policies and where our disease rates are and if you look at the South in terms of the rest of the United States, it’s just red.(3) You know how they have the red dots showing disease.

[The Human Rights Watch brief] was the beginning of North Carolina and the South getting attention about their failure to act. That’s where we are in the South, where our moralistic ways fly in the face of protecting our citizens from disease.

Selena was my daughter, born to a mother who was struggling with addiction and when I say that I mean struggling with everything. Selena was biracial, so here in the South I discovered racism for the first time. I had never seen it for what it truly was until I had and raised her.

Selena had a long history of mental illness. She suffered from depression, bipolar illness, anxiety, and addiction issues. I feel very strongly that she was using to deal with and “treat” her symptoms of anxiety, depression, and mania.

The maddening truth about what happened to Selena is that it was avoidable. Selena was trained in overdose prevention…I used to take her to my talks all the time. She wanted to work with me one day doing harm reduction.

I sent her to rehab, or rather we agreed she should go. We tried to find a nice place we could afford. I just wanted her to sober up…. Take a time out if you will. Like most parents, even though I knew better deep inside, I took a breathe of air. Finally, I could relax for a minute. She was safe.

The rehab she went to did not have Naloxone on-site. They obviously did not take dual diagnosis serious, even though I talked to them for hours about the importance of a treatment center that actually took her mental illness serious.(4)

No Naloxone…no real understanding of mental illness. Now my daughter who was safer at home with me is no longer here. She was my reason for living.

I am sad. So very sad. I feel I have lost so much. She meant everything to me. I just work now. I have just thrown everything into the work for right now until I can figure out how to cope. I don’t want go down that dark road I have so many times….but the pain is unbearable.

I honestly believe that pain doesn’t create change. I’ve had lots of pain, and it’s never motivated me to change a lot. It’s made me want to die a lot. It’s made me want to give up.

But it’s been passion that has been what’s moved me to move out of situations that were dangerous or damaging. It’s been that that’s driven me forward and allowed me to not destroy myself with drugs. With the death of my daughter, it wouldn’t surprise me if I just gave up. I don’t really know how I’m okay. I don’t question it a lot. I’m glad that I’m okay right now. But I know that it’s only this work. It’s only feeling like I’m a part of something that matters.


Notes

  1. Suboxone and methadone are medications that are prescribed by physicians to treat narcotic drug addiction.
  2. As the state’s most comprehensive harm reduction organization, North Carolina Harm Reduction Coalition educates the public about harm reduction tactics such as syringe exchange and Naloxone and lobbies elected officials and law enforcement officers about the advantages of harm reduction policies. The organization lobbied successfully for the passage of H.B. 972, which legalized syringe exchange programs in North Carolina.
  3. The advocacy brief, released in 2011 and titled “We Know What to Do: Harm Reduction and Human Rights in North Carolina,” features Louise’s struggle with drug addiction and underground syringe exchange work. Her story was related under “Linda”, a pseudonym.
  4. Dual diagnosis is a condition in which a person is diagnosed with both a mental health disorder and addiction to drugs or alcohol.

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