Taking Action Summit: Reducing the Shame and Stigma of SUD
Everybody ready? Okay, all right. I'm Tedra Cobb and I'm a consultant to UR Medicine in the Recovery Center of Excellence. And I'm getting to know people.
I'm seeing a few people faces from other workshops. I work to facilitate the community conversation on opioid use disorder. So I'm not gonna tell you everything about Dusty and Marcus, but I will tell you this. I was in Oklahoma last week, and we spent a week together in their community doing a community conversation and then a train the trainer so that their community can do that workshop.
So that's pretty much what I do. I travel around, I work in communities, and then I do a train the trainer so you won't need me anymore. Then you guys can facilitate on your own. But I'm always gonna provide TA, okay?
Technical assistance. So let me tell you really quickly about Marcus and about Dusty. Marcus is the outreach, no, you're the director now. Since I've known him, he's moved from the outreach coordinator to the director of Cherokee County Health Services Council in Tahlequah, Oklahoma.
And he will tell you about his background, but you can see his beautiful photo and his background in the brochure. I don't like to read people's bios, 'cause I want them to tell you and you can always read their bios. Dusty is now a full-time peer counselor, peer educator, and she's sort of moved up into that position. And it's really exciting because she's brand new, full-time and she's working in a new MAT clinic in their community.
So they're gonna tell you about themselves, their background, the work that they're doing. I'm gonna make sure that we have time for questions too. I know some people save questions for the end, but they're gonna make this as interactive as possible. So I know you've done a lot of listening, but be prepared to do some interactive time because it's nap time for me.
And I told them, don't let anybody nap. There's no napping. If I can't nap, you can't nap. That's right.
If they can't nap, you can't nap. All right? Are you ready? Well, with that, I'm gonna hand it over to you.
(audience applause) - All right, thank you. Yeah, just a quick introduction of who I am again, Marcus Buchanan. I am the new program director for our RCORP at Cherokee County Health Services Council. Just a real quick background, I had gotten to like a peer pressure in high school, started drinking a little bit.
Rural Oklahoma, the Lortabs and the oxy they were popular back then. I had a minor back surgery, which led me to the full blown addiction of opiates. The surgery was supposed to be one of those things where you get one week worth of opiates. And I found out that every single time I called, they never told me no, which turned into an entire year of getting way too many way too often.
And they finally caught on and cut me off. By that point, I already knew people, so I didn't have no trouble finding it to get it. That turned into a two year black tar heroin addiction. I finally discovered MAT clinics and what they do.
I worked the program as they asked me to and stuck with it. And 2016 was the last time I ever used heroin. So methadone saved my life 100%. But yeah, this is gonna be very interactive day.
I wanna want some examples, some conversation from everybody, but I'll let Dusty introduce herself.
- I got one on already. All right, my name is Dusty Rollice. I work with Marcus at Cherokee County Health Services Council in Tahlequah. I also am full-time peer support at the New MAT Clinic NHS, Northeastern Health Services.
I too peer support, of course. About 20, 22 years worth of doing, selling, everything that goes with that. I went to prison 40 years old. They actually had rehab in prison and I signed up, went.
I was in there for about a year and a half. Saved my life. I was very angry when I went to prison, of course. But after that time, I realize now that they were just doing their job and it saved my life.
I have a way better life now. So that is just a little bit about me. And so we're gonna get started. We are from a little bitty town, and most of you all are probably gonna know the questions and things that we're asking, but we're presenting it like we do at home, okay?
So with that being said, so how many of us know what substance use disorder means? Okay, same thing. Addiction, substance use disorder. We're gonna refer to it like that throughout.
But first of all, I wanna kinda brainstorm with y'all, like stigmatizing words that have to do with addiction or addicts, substance use disorder. Y'all can just throw 'em out. Marcus is gonna write 'em down up here. Anytime, go.
User. Clean and dirty. Addict. Abuse. Addict. Crackhead. Drug-seeking. Junkie.
- All pretty stigmatizing words. Okay. This doesn't help anybody. I mean, we're here to talk about shame.
I mean, like for instance, abuse. There's never any term that I've ever heard that abuse is in that was good. So just automatically, that's just a bad word. So none of them are positive at all.
And like I said, we're here for shame. So how are we gonna make that any better? We need different words.
- Go ahead.
- Our goal is to get people in recovery. It's not to get 'em thrown in jail. It's not to have more overdoses out in the street. It's to get them help, and none of these terms, none of these stigmatizing terms help people get to those places, especially that most of these terms have been accepted throughout the years.
But we're learning more and more about addiction every day.
- So addiction is not a lack of willpower. I mean, that's what we've learned. It is definitely a disease. I know this because my own experiences, I had a choice when I started using.
I had a choice. But let's say I had a choice the first 10 times I used, first 20 times I used. But I lost that choice after a while. So something changes just very shortly after you start using.
And that's how I know myself that it's a disease, because I would've had a choice up until the day I quit. But I lost that choice. Like I said, it may start out as being a choice, but it very shortly ends another way.
- And I'm sure we all know people who drinks alcohol. So there's some people who can go out on a girl's night, guy's night, come home, be home that same night. And there's gonna people like me who come home a month later. Now, we can relate that to opiates, as I talked about at the very beginning is I received that one week.
You'll have people who get that one week and not even take all of it. They'll throw away the last few days not needing it. I will use that whole week in two or three days, and I will call to get more and more and more until I'm buying it off the streets. So that's kind of where we do learn that some people are born with that genetic trait of addiction and are predisposed.
- So let's look at numbers for a minute. How many Americans are affected? We've got 20 million that are symptomatic, that are actually in the disease actively. And that's a pretty big number.
I mean, a pretty big number. But 23 million are in recovery. I mean, at least we're winning a little bit that way. But 43 million.
When we know that there's 350 million, not really a big number. But it just sounds that way, 'cause really, we're gonna do a little example here.
- So 43 million people are affected with recovery, these numbers say. But like she had said, there was 350 million people in the country. So if you look at it as a fraction, let's say that's 1 in 10 people that are living or being affected by addiction, whether they're living through it or in recovery. Every single one of those people have kids, parents, grandparents, all the way down the line.
So we do a quick activity real fast. I just need two volunteers to stand up. I promise this won't take long. Two volunteers.
All right, thank you. Okay, so there's about 20 people in here, all right? So are you married?
- Okay, I need one person to stand up to represent her husband.
You're my husband.
- All right. (crowd laughing) Do you have children?
Two or four.
- Okay, I need two more people to stand up, if you don't mind. Are you married? No? You have, do you have children?
- Parents, yes. But both parents? Yeah, two more people. Stand up. I can keep going and going and going.
Just because you're living with addiction or you're living in recovery, the amount of people who are affected just keeps going and going and going. My grandmother was affected. She took that to church to her prayer circle. Everybody in her prayer circle took it back to their families.
It just never ends. That one person's a ripple effect and it affects everybody. Thank you, I appreciate it.
- So substance abuse is a disease, like I said, but it is a family disease. I mean, everybody is affected. I don't know anybody that's not. These days in time, I mean, whether it's not a direct relative, it could be a friend.
I mean, everybody I know is affected in one way or another. And I mean, I'm not talking about just because I know him, 'cause I affected him too, of course. I'm the least of their worries today. They're affected by others now.
- All right, we're gonna really start to talk about stigma now. Can I have anybody here who would like to just tell me your own personal definition of stigma? If you were to have to give somebody an elevator speech on what stigma is?
Just real quick.
- Anybody? I'm just curious to see what kind of different perspectives towards stigma. Yes.
- [Speaker 1]
When someone assumes something about (indistinct) - Okay.
- Very good. Anybody else?
- [Speaker 2]
Yeah, can you repeat that in the mic? Can you just repeat what you said (indistinct).
- [Speaker 3]
- [Speaker 3]
- [Speaker 2]
Yes, so if you repeat it, then he can say it to the mic.
- [Speaker 1]
When someone judges you based on prior beliefs.
- When someone judges you based on prior beliefs. That's great example. Anyone else?
- [Speaker 4]
It's a bias.
- Very much so. Another contributor to stigma is criminalization of it. Part of the war on drugs way back '69 or so when they declared the war on drugs, that started a whole line of what we've got today, which is a whole bunch of people with records, a whole bunch of people that can't live, per se, a normal life. You can live a normal life, but like, I mean, my felonies follow me around.
When I got into this type of work and I become a peer, I was really nervous because all the stuff that you try to keep from an employer was all the selling points. So totally backwards for me. I was blown away. So I mean, 'cause I got experience.
I mean, I got experience. There's no doubt about that. There's some of us that aren't so fortunate to be able to do this work or even get into it. This is my life now.
I can't do anything else. Even when I'm not at work, I come across it, and I was doing it before I've come up here. It just fell right in with my whole life. So like I said, when I work and when I'm not at work, I'm doing the exact same thing.
But stigma and laws go hand in hand.
- So let's see how stigmatization played out in a court. So in 2017, a Massachusetts's court was to rule whether or not a relapse or setback by someone with an opioid use disorder was a crime or not. The court had ruled that yes, they believe the relapse while probation was cause for arrest. However, the Massachusetts Medical Society had said a relapse is just a symptom of addiction and needs to be treated.
So the court had said that a relapse or a setback is criminal, but the medical society has said it was a medical condition. So that's what we're talking about today is addiction as a medical condition.
- So laws with stigma behind them hurt people, basically. And laws are hard to change. I mean, they were hard to get there. And it's nobody's fault.
I mean, this is what everybody was taught. I mean, this is the way it's been for years. I mean, like I said, way back in '69 when they declared the war on drugs and started putting everybody in jail. It doesn't work.
It hasn't worked in 50 years. It's not gonna work. I don't see it working tomorrow. I don't see it working today.
So the stigma is the key. I mean, we've gotta get rid of that to be able to move on, to be able to help anyone for that matter.
- So we're gonna look at just a couple of forms or types of stigma. So we've got enacted or experienced stigma, which is the direct encounter of social discrimination or rejection. I can personally relate that as in when I was going to the MAT clinic, how impossible it was for me to get a job, 'cause as soon as I would go get the drug test, I would pop for methadone. Then I have to go into the whole conversation of why I'm taking it.
In rural Oklahoma, they really did not like anybody on methadone. So that made it exceptionally difficult. They didn't understand that it was actually helping me get my life back. They're just seeing it as another opioid as being abused.
And then you got the public stigma, which is endorsed by the public of prejudice against a stigmatized group, which manifests in discriminations towards individuals in that group. Did you have an example of public stigma?
- Oh yeah, I mean, the same thing. I mean, if you're looked down on, you feel down. I mean, you can't not. I mean, and people stigmatize theirselves, especially people on drugs.
- I think another few more ways of public stigma, you'll have like the heroin users talking bad about the meth users. It goes all the way down, all the way down to their NA talking about AA. We stigmatize ourselves even in the recovery community. Another public stigma personally was, I can never really get much support by my NA community because of my methadone use.
I'm extremely honest person. So when I would introduce myself, I always would say that. And a lot of doors got closed because I was honest and let them know that's the route of a recovery I took.
- And like I said, nobody can beat me up like I can. I mean, the self stigma is, to me, is worse than any other stigma I could go through. Because like I said, I know exactly what to say to hurt myself. So with that being said.
- Another self-stigmatizing occurrence from me, we've done this presentation with all the local law enforcements in Northeast Oklahoma and the little community that we're in, the county sheriffs. Now, I would walk into the room just like this and they'd already be sitting here ready to go. And I would immediately self-stigmatize myself. I would immediately think, "Oh, they can see my track marks even though I'm wearing a hoodie or wearing a long sleeve shirt.
Oh, they can tell I was a former drug user." And when I actually sat down with a few of them, I told them that. They said, "No, it's your neck tattoos. We stigmatized you over that.
We had no idea you were even a user." So us in recovery, we definitely stigmatize ourselves.
- And so we're left with how do we change this? What can we do to make this different? Well, educating people just like we're doing right now. If we can educate people, then we can change it.
I mean, because the stigmatizing ways, they're not working either. Just like throwing people in jail. It just don't work. So we can change people's minds.
We can change the way we talk. And a lot of people just don't know. It's not their fault. It's just, if you know better, you do better kind of thing.
- And we see these different professions up here, which I hope some of them are in this room today. But I could give you examples personally of how I've felt stigmatized by each one of these different professions. But I always try to make it positive. So I actually have a good experience with the nurses.
The MAT clinic I went to, the intake nurse, she had told me that as long as I stick with the program, she would stick with me through the whole whole program, and that's exactly what she did. I wouldn't have came back if it wasn't for her. Prior to that, I had nothing but negative experiences with medical providers. My opiate abuse followed me from dentists to general practitioners, everywhere.
Also, law enforcement. I never had a single positive thing to say about law enforcement until this past year working with them and seeing how they aren't what I thought they were as you see on TV and everything. Well, the ones we worked with weren't. They were awesome.
So they helped change my mind. They helped me reduce my stigma towards them. Just having a conversation with them.
- Because if you know better, you do better. A lot of them didn't know better either. So education for them was key also. I mean, there are great people in the world.
Just because you have an addiction or a problem don't make you less. I mean, just my experience with the hospital, I'm just gonna tell you a short story. I went to the hospital for, I don't really even know what it was, but I know I had to have been pretty serious or I wouldn't have been there, because I knew what was gonna happen. I knew that they were gonna do a test and they were gonna see I was on drugs.
And that's how it went. And so the doctor was like, "Well, you're on drugs. That's your problem." And I'm like, "Listen, I've been on drugs 10 years.
This was not happening yesterday. This was not happening in the past 10 years. So it is not the drugs. So please just help me figure out what's wrong with me."
But of course it ended with me going home and them giving me some antibiotics. They didn't even care. So like he said, I hate to just be so negative, but when negative is the only encounters you've had, that's why we're out here doing what we do is so that we can change that. Do y'all have any stories?
Any stigmatizing in stories to tell? No?
- Any occurrences where you've been stigmatized for any particular reason or?
- [Speaker 5]
- [Speaker 5]
Story's not personal to me but- - [Tedra]
Can you give the mic?
- [Speaker 5]
Not most comfortable thing to do.
- I know. (laughs) So I am on the treatment team for drug court and family treatment court back in my community. And so terms and conditions are that you have to fill out a form saying that you are a person with a substance use disorder if you go to any doctor's appointments or have any procedures done. And so we had a participant not do that and they were like trying to, what's the appropriate sanction for her?
And so like I was able to chime in, like I understand it's like part of terms and conditions, but like I've been there and like I know how you don't know from a first visit how your primary care physician or whoever you're seeing, how accepting they're gonna be of that and like how intimidating and scary that is to write off the rip. Be like, "Hey, I'm a drug addict." You know what I mean? And so like I was able to provide that input.
She didn't get like seriously sanctioned, but we did have to provide something 'cause it was a violation of terms and conditions. But I think a lot of people don't understand that. And I think back to your guys' education, "We know better, we do better." I like that.
But I just think people that have never been there don't get it. Thankfully, I have a great primary care physician, but I didn't tell her that I was in recovery for like the first four or five visits because, so it's just hard to navigate. So I just wanted to share that, like they want you to do this specifically, but like if you've never been there, you don't understand the struggle that comes with it.
- Absolutely, thank you. I have been in drug court. I did it after my prison sentence, which is like unheard of in our town. And I've been to the doctor.
I know exactly how that is. And it is very scary. Very scary. So the language is important.
The efforts to reduce the stigma is great. I mean, we could give this every day, 10 times a day to people and still not touch everybody, or convince everybody. I mean, some people are just gonna be set in their ways. I mean, there's just really nothing we're gonna be able to do about it, other than them having a family member or them having a loved one.
I mean, people tend to change their mind whenever it's somebody that they love and care for, which is all back to the words and the stigma. Marcus, you got anything?
- So we did talk about the beginning about these negative words. I always like to end, like I said earlier, on positive notes. So what are some things or terms or names that everybody in here has heard like to positively describe someone with substance use disorder? I just wanna hear a couple of them.
Like some positive terms that we can take away today.
- [Speaker 6]
A family member.
- Person in recovery. I think we're looking for like misuse instead of abuse. Things like that.
- [Speaker 7]
- [Speaker 8]
- [Speaker 9]
- Very good.
- [Speaker 10]
- [Speaker 9]
Special sauce for treatment.
- There you go. There you go.
- [Speaker 11]
Naming them by name instead of just a user or user.
- That's a good one. They are a person before they are what their disease is.
Marcus, can you read those for everybody who's watching? 'Cause they might not have heard them all.
- Yeah, we have a family member, a person in recovery, misuse instead of abuse, survivor, a community member, peer support and then person first language. What are some more? There's gotta be a couple more. Someone from your community, maybe different, each community may have different- - [Speaker 12]
- Mentor. We got mentor, educator, person with lived experience.
- All great.
- I mentioned earlier the ripple effect of stigma and how it all affects. Like these are the type of words I am trying to kill. My son's nine years old. I'm from a very small town.
I'm terrified for him to get to the age where he's the son of the junkie. Or my parents or grandparents are seen as they raised the junkie. I wasn't even a crackhead, but I'm sure people thought I was. But I'm labeled with all those labels that are up there.
- And I just wanna put in, this has affected three generations of my family, from my parents to me to my kid. I'm going through it with him right now. Not fun. I mean, a lot of people say, "Oh, you're paying for your raising."
Well, not really, because it's a lot scarier these days. He's doing a lot more than I ever thought about doing. I mean, I'm pretty minute compared to the things that's going on in his life and it's scary. It's very scary.
I make him sit through a whole bunch of my stuff. He doesn't like it at all, but he lives with me so he's kinda got to. That's where we're at with that.
- Yeah, so we started out with all these negative words and we ended up with all these positive words. It just comes down to mindset, just trying to get people to change their mindsets. That's all it is, especially in these rural communities. A lot of stubborn people out there that just keep passing it on down generation to generation.
So I'm hoping by the next generation, by the time my son grows up, junkie's not even a word that it's in the vocabulary anymore. So as long as we can get there, I'll be happy. Is there anything anybody like to add?
- Any questions?
- I have a question about the use of medication. So I'm curious to hear your thoughts about the medication assisted treatment. In our clinic, we've been trying to use medication for opioid use disorder or MOUD or just pharmacotherapy because we don't use that term for any other chronic diseases. So I'm curious what your thoughts are and what your approach to that term is.
- I never personally had an any issues with it being called that. Would you call it something different?
I'm sorry, you're asking if- - I don't understand.
Medical assisted treatment is no longer okay, or changing that?
- The name, the term. (speaking indistinct) - You mind me asking what do you use? (speaking indistinctly) - [Speaker 13]
Because medication assisted treatment find that treatment shouldn't always necessarily include medication. It should just either be called medication or treatment. Like treatment is other than. (speaking indistinctly) - That's great.
We are, like I said, from a small town. So we are in a lot of ways really far behind. Really, really far behind.
- I can feel myself turning red cause I (laughs). So I'm from Vermont, and we are moving away from using medication assisted treatment as the term and instead using, if you wanna continue to use that acronym, medication for addiction treatment I think is one way to do it. But medication for opioid use disorder and medication for alcohol use disorder, MOUD, MAUD. And that's because when you have, like it's a qualification for the word treatment.
So you're making this implication that treatment doesn't really necessarily include medication. It is something without medication that's being assisted by medication when, for any other chronic disease, you would never say like medication assisted treatment for your diabetes, right? You would just say it's your insulin and it's a medication. So that's, I think, the explanation for me.
Absolutely makes sense.
That's a really good explanation. Thank you, yes?
- Yeah, I just wanted to add on that I used to advocate a lot for the medication assisted treatment because I think medication is part of the treatment, but medication is not the whole treatment by itself. It doesn't help me with the cheating, lying, manipulating with other things that I have to learn with therapy or with groups or something like that. So I used to advocate a lot for that, 'cause I saw in our communities where there wasn't MAT clinics, and then they started being a lot of MAT clinics but just for medication, right? You will go get those and get your medication and then that's it.
But I wasn't working on my traumas. I wasn't really working on other things where I think they were very important. And so there's where could go biases, right? In different way.
Like is this really medications really just supplementing the drug from another? Is my drug dealer a doctor now? You know what I mean? It could lead to another conversation, but I wanted to emphasize on the A a lot, right?
When it's medication assisted treatment. Just wanted to say that, thank you.
- Yeah, and so with that, this is the first MAT clinic going in Tahlequah, in our town. And it is fully, a full all the way around it. You don't get it unless you're seeking counseling and doing the whole program. So we're treating the whole person.
And that is very, very important. I don't see that medication alone can do it. I mean, because you're not, like you said, not treating any of the other problems that got you there in the first place. I totally agree.
Tara, do we have any online questions?
- [Speaker 13]
Hi, could you say a bit more about how you used RCORP grant to confront stigma in the community?
- I used some of the grant funding to purchase this presentation itself from Overdose Lifeline, a nonprofit out of Indiana. But to get this out there is what the biggest battle was, trying to get the community to accept it. We had a great partnership with a neighboring county in Oklahoma who was the sheriff's department I had talked about and they let us do it every single shift of the sheriff's department, even the city police department. The biggest thing that we were able to do is get this Cleet certified for one mental health hour.
So we have law enforcement agencies seeking it now.
- Even if it's just for the Cleet, they're still hearing it. That was our deal.
- Yeah, I think the one thing me and Dusty are good at, we're very vocal and open with our stories. We'll share whenever we're asked to. Like somebody will have a conversation with us and something will trigger an old story. Like, oh yeah, that one time.
We're just really open with our recovery. I think that was the biggest part of it.
I think we got another question.
- Is there any other community member groups that you guys have had any success with working to reduce stigma?
- Well, other than law enforcement? Absolutely. We've given this to upcoming doctors, upcoming nurses. They invited us back, wanted to talk with us a little more, 'cause we were kind of limited on the time frame that we had with them.
And that just kinda spread, word of mouth. So we have done the law enforcement, we have done like some of the medical staffs, we do it in schools, middle school all the way up to the high school. Just the awareness of the stigma and the opioid epidemic altogether.
- Also, our faith-based community have allowed us to do this a few times, and they have been awesome. Of all the different groups we've done it to or done it with, I felt like that would be the most stigmatizing personally. Like I would get like the most stigmatized questions and statements, but it was a complete opposite. They were the most open.
So that was really eye-opening, and we have a great relationship with them now.
- [Speaker 14]
How did you find success in the faith-based community?
- One person.
- We had an awesome community champion. Awesome. She actually had reached out to us and asked if we would help her with her congregation on bringing awareness to Tahlequah about substance abuse. And she had heard that we're open and we talk about it so openly, and she's an extremely eccentric person.
So she helped us get out there. Yeah, I can't say we had great success without her. She came to us and brought in all the other churches in town. So it was finding that one community champion in each different sector.
Like we have one in the local schools. We have, like I said, faith-based, law enforcement. We got really lucky. We have a Cherokee Nation in our back pocket.
They're right there in the same town as us. They have tons of funding they put towards it. They have tons of great programs. Think SMART OK is one of them we partnered with.
Yeah, without them, we'd still be kind of growing. They really helped get us out there. They helped us get into the sheriff's departments and everything else, their prevention team. So we've had a lot of great partners.
Really lucked out in our location.
- [Speaker 15]
Since you all are already doing it, have you done like any type pre-survey or post-survey to see whether or not there was any measurable change in attitude?
- Yeah, we do like a post-survey. About a month later, we'll send it out, and it's questions that are more like, have you caught yourself using some of the terms that we spoke about last month, or have you corrected other people? It's just real basic questions like that. Like real life conversations.
How have you changed since then?
- Are you more aware of the things you say? Things like that. That specific data we do not have with us on it. We're really waiting until we have a significant amount to be able to bring that.
We have a couple more minutes. Anybody have any other questions? Wanna close this up?
- Sure. We appreciate y'all listening. And if there's anything that y'all do wanna ask or whatever, you can reach out.
- Thank you. (audience applause) - So I'm just gonna do a special shout out 'cause I was just with these two and they've spent hours and hours and hours. They had another presentation that it was a talking at, and they've really worked at changing it and changing it and changing it so it's talking with, and I think they really modeled that. So I just wanna give them my special gratitude, 'cause I've been able to see just the growth and the thinking and the real work that it takes for all of us as educators, as peer educators, not to talk out but to talk with, because that's what it really takes in our community.
So I just wanna say how proud I am of you, and thank you.
- Thank you. (audience applause) Oh, and follow us on TikTok. (laughs) Opioid 918.
Marcus Buchanan, PRSS
Outreach Coordinator, Cherokee County Health Services Council
Dusty Rollice, PRSS
Peer Recovery Support Specialist, Cherokee County Health Services Council