I want to live my truth. And I don't want to feel a shame for living my truth. This is who I am. Hear me. I'm here, and I'm not going anywhere.
It all started when Susan Carl classes structure at the nursing school had the idea of inviting you to her class to talk about what it's like to be HIV positive and also seeking healthcare service. The idea then expanded from providing nursing students at Heartland with awareness for an equitable environment, to opening the event for everyone in the community, unique perspectives navigating healthcare as LGBTQ plus individuals on Wednesday, February 19 2020, is an event for conversation and better understanding. Tell us more about yourself. And then tell us a little bit about your role in the evolution of this events.
My name is Dion McMeel. I am a black HIV positive man. And that's kind of my big role in the presentation, how I've got involved in how that evolve. But I met Susan Carl back last year at the queer formative that was held at night Shopback, last year in October, and she was there and she had witnessed or had was in a crowd of my first presentation, or at least my first time for queer formative. And she loved it. And she said, she came to me afterwards. And she asked me, Hey, would you want to be a part of this event? Next year, and I was like, I would love to, I would love to share my story, and continue to bring awareness of the issues in the stigmas, people living with HIV faced. So over time, as the date got closer, that evolution to me was kind of like, okay, I've talked about fear, stigma and shame, what do I kind of want to bring to this program, because these are going to be the people who are going to be in attendance or the future, they're going to be taking care of you, they're going to be taking care of me, they might be taking care of my mom as well. And I wanted to come there with some substantial information. And not saying that I wasn't before, I don't mean to discredit myself. But I want to make sure that that they really understand the value of what it means to be vulnerable with patients and how that vulnerability creates transparency between the patient and the provider. And because of that, we now have an established visibility for each other, we have a relationship. So I wanted to really come in and say let's look at the language and how we communicate with one another
was that when you realize that this topic needed a wider audience,
when Susan came to me and told me the amount of people that would be a part of this, to me, I was like, Okay, I really want to bring bring it was, was what I was telling myself, I don't think I necessarily played too much of a role. As far as the amount of people that were there, I had a few of my friends who attended co workers as well. And the amount of people that were there, it's phenomenal because it not only solidifies that this is important, it solidifies that heartland and its program, the students that attended the staff, they all want to be leaders in the healthcare field, they want to set their students up to understand what HIV stigma is what issues a transgender person may face throughout their lives. It's such a great way to create space for us to have those conversations that may seem uncomfortable in our typical spaces where we're from, but for you guys to create that space for us. And for them, I think, was one of the primary reasons that drew the numbers there.
It was truly incredible being there and seeing people pretty much not finding seats where they were just standing at the door and they were still listening. It was great to see that. Where do you think that came from? I
really was. I really don't know. I just I give the credit to Susan, Jennifer, the nursing club, Harlan College, into also myself and Orion because I think we knew what we were doing when this was starting to form. And then because of that, I think it drew attention. I think if you're in a place such as Bloomington where there isn't always spaces to have these types of presentations and conversations it's always a savoring to be a part of and in some cases it's it's kind of starving you you want that and and just thinking personally for myself, I was like I'm thinking this is going to be great. This is going to be what I need. This is going to be something that anyone who is everyone that fills that Human Interaction and human communication is valuable, wants to be a part of. And I think just that message of inclusive and being a part of something much bigger than ourselves, really drew people into the event, it was really, really amazing to see the amount of people that were there.
What are some frequent examples of stigma that an HIV person from your personal experience? Yeah, can face particularly,
I think one of first stigmas I had to get really familiar with or just uncomfortable thing that I had to learn how to get comfortable with is going to my doctor and talking about my sex and my interactions, who I'm having sex with, I think, you know, in society, it's, I wouldn't say necessarily stigmatized to talk about, but it's not always the most pleasant conversations to talk about sex, but we need to have those conversations. And I think once we have those at a certain age, it kind of falls off, because now we know what sex is. But if you aren't going to your provider and talking about it, it makes that kind of feel like you got to dust off that skill and, and go back in. But just for me, when when I was going to my doctor, and this was a great story is when I went in, and my doctor asked me, Hey, we need to do a rectal exam. And I'm like, wait, I'm only 23. Like I shouldn't be, there shouldn't be any pressures to think that I'm going to develop cancer, I was really scared, if anything. But looking back at that experience, the facts are if I'm engaging in that type of sexual behavior, that type of sex, then I'm more at risk of developing that. And so I think at the time, I felt like I was being selected for this, when that wasn't the case, it was we want to protect your health. And I think I had to make sure that I got familiar with trusting my provider. And I say trusting is another thing, that as a black person, before, I'm HIV positive, that I have to get comfortable. Because if we look back at history, we can look at all of the different medical disasters that the black community had to embrace face and deal with, that had Creek trauma for generations. And just looking back at my childhood, you know, I didn't necessarily always had, oh, I need to go to my doctor for this. And, you know, that wasn't a priority of mine. So I think when I came HIV positive, I had to bring the both of those worlds together. Even though I had distrust as a black man, I had gained trust when my provider because she knew what she what she was doing. She knew she wanted to protect my health. And I had to bring those worlds together for myself. And I think when I did that, it really allowed me to understand why it's important to look at certain stigmas, why they exist, and how we can dismantle them, it really comes down to the you know, the communication that we're having with ourselves. And then what we're having with our provider, one of the ones that I don't necessarily talk about often is disclosing is a big one, the stigma around Do you know the law, and I get a little shaky because it's, it's something I feel very deeply. Um, you know, a lot of people fear of disclosing their HIV status. For me, I'm I'm undetectable, which means that I am on transmittable, I can have a healthy lifestyle, I can have children, I could be active, I can do all the things that anyone who is HIV negative can do. But for someone who doesn't have access to care, maybe a community that does not allow it or attract that certain demographic to their facility. When I don't have access like that, then I'm a I don't know that I'm HIV positive. And when I'm having sexual encounters, I don't know that I could be passing this virus to the next person. But when I find out, you know, go and get tested. I learned that information. Now I have an inherent the ability to disclose. And sometimes disclosure isn't always positive.
It seems to me like you're kind of linking awareness to access
you, you said that really well. It is really having access to care. Because when we know that it's out there, then we can access it. But it goes back that there are certain barriers that are different communities, even though they do know they have access to they may face repercussions because they're accessing this care. And I mean a great example, there is a study where we're looking to invest in molecular surveillance. And what that means is when I get my blood drawn my blood like cold, it's like a blueprint. It's my genetic. So if there was an HIV outbreak here in Bloomington, and my genetic code was discovered in that cluster, that information can either be used in my favor, or it can either be used against me. And when I mean in my favor, I mean, hey, Dion, there was an HIV outbreak, and we're calling to let you know that you should go get tested. And what it can be used against me is if I'm fear of disclosure, if I don't disclose this, and someone who was was involved in that cluster, that I potentially may be involved in, can go to law enforcement and say, this individual intentionally put me at harm, and nine times out of 10, that individual who is HIV positive will will face legal actions immediately. And I think we have to look at a lot of things when we talk about access to care, because it is a great thing. But at the same time, we need to figure out how access to care looks like for each demographic, and each community in that it's equal. I'm still learning a little bit of it myself. But the study itself, the action, or what it's called, is called molecular surveillance. And so what that is using myself as an example, is when I go and get my blood drawn every six months to make sure that my liver, kidneys, and liver levels aren't affected by the antiviral medication that I'm on, that my CD for account is in the proper range that my viral load is remaining undetectable, which means below account that these really comprehensive tests can't really detect. When I go and get those done. They have my genetic code, which is, by this blood sample, we can identify this as Dion, this is a certain blood type that belongs to this person, this individual. When you have that, and you have that when multiple individuals who come in, get their labs done who are HIV positive, you now have a collection of that data of that information. As of now, I believe the state currently is determining if it wants to pursue and invest in that route, if that's something that's useful, but I think a lot of us at a grassroot level, can see that as invasive, unethical, and in some ways it, it can help. You know, it can get people into care. In my speech, I use one of the examples of Personally, myself, a local health facility had contacted me and informed me that I was out of care because my paperwork had not been reported to the state, the state has a procedure where you're determined out of care, close to a year, then they have these officers, for lack of better words, surveillance officers contact you, you may not know who they are, but they contact you and ask you, Hey, are you out of care? What can we do to get you back from care? I think that's a really great tool. I think that's something that is very helpful. That is separate from molecular surveillance, however. So just using that as an example, if, if that were to happen, and they discovered that there was an HIV outbreak, and it has my genetic code in that cluster, a neck exposure, and they know that I'm already HIV positive, and someone who is HIV negative then goes to law enforcement and say, Hey, this individual had put me at risk of HIV. It's a charge, it's unlawful to put someone at risk of HIV.
Are you saying also that this is kind of raising the question of security versus privacy?
It does. Yeah, I was just actually bad to get to that it, it does raise that big question. Because, as law enforcement, I can subpoena for your medical records. And that can let me know if you are HIV positive, whether you know it or not. And if you do you know it, you're going to face those consequences. But we look at if this is an ethical way, yeah, I can help but at the same time, what are we allowing? How are we allowing it affect the people who aren't so lucky to be in places and spaces where they can go and get tested, and they can disclose upon sexual encounters,
organizations such as the central health equity policy council, they advocate for providing health care practitioners with awareness trainings, there's several other organizations that do this. So what do you think about this specific approach? How effective do you think it is?
I think this approach is extremely effective. And the reason why I believe it is because my involvement I volunteer with an organization called Central Illinois friends, that assists people living with HIV in regards to transportation, medical cost, just getting the information that they need to be healthy and happy. within the organization. They have an event called get yourself tested and that that's held at different high school locations where it's sort of like a fair, a sex education. It's really cool like Planned Parenthood there, there are multiple different organization there. They're just providing all types of resources to the youth, because they're the ones that are going out into the community and, and they're going to be adults, and we want to educate our youth, we want to start young. So I think it's important that those awareness, things are happening, because the more we hear it, the more we we know that it's a real thing. Of course, we know it's a real thing. But the more we hear it, the more we understand it, I think the same is like an adult needs to hear something about seven times before they really, you know, understand or know what you're talking about or heard what you're talking about. But I think that it is very important to have those awareness events. Another useful event is having people such as myself, who are living with HIV, or who may be living with some other STI and have an experience, and I'm willing to share their story, I think we need to have those opportunities where we're empowering them and bringing them in, because they're the ones that are living the story, people who are involved in the organization, that's their job, or they're passionate about their job. But that's different from someone who's living with it. And when we're able to bring those two together, I think the awareness and the actions is just 10 times powerful, is more effective.
There was something interesting that was said at the event. I'm not sure who said it, but I remember it was we want to have people aware, don't young people aware but we also want to have health care providers aware and it's not like you said it's not like as easy when they're maybe older aware access, maybe 20 years ago was not as easy for this type of information. You talked about doing that with younger people. What about all these health practitioners that are out there that maybe didn't get that chance that these young people are getting from these organizations? Are we just gonna wait for two decades to you know, which I think it is useful? Yeah. If you had to think about approaches for that. But would that be,
I think, a sound approach, it really is empowering the youth is one way, and in this case, future nursing students does the best. I wouldn't say it's the best bet. But it's a good tactic. Because what that does is we're given the information, such as myself, I'm going in, and I'm talking with people about my life and my encounters, the stigmas I face and the issues that I've encountered when I go to my healthcare provider that is uneducated. And that's okay, because I think it's a little bit of balance, you know, sometimes I gotta educate them. And sometimes they're educating me. But I think if we're both transparent, with that happening, I think it's a beautiful thing. But the reason why I say that it's, that's one of the good routes or good actions, is because then they can go into their fields and their groups of people that they're with, if one's that advocate, Broman, and another one's at Carl, a hospital, and they were a part of this presentation, they now have something that they can bring to both of those facilities that maybe they didn't have before they bring something to the table. So I think that's really kind of important when we have these type of events is that we're giving them tools, and we're educating them, so that they can go and be better prepared and have a tool that may not exist already because of an older generation, or just lack thereof. And when we're able to put that in there, then that can be shared and be talked about, and we need to empower that. I think it's the best way to put it. That's I think that's one of the ways,
maybe this is just my personal perspective, but you kind of like a spokesperson in a way not necessarily for every single person, but you're definitely advocating for cause right? Yeah, yeah. I'm thinking is how did that happen? A lot of people, they just say, okay, like, maybe I'll just deal with my own struggles. And I don't necessarily feel comfortable educating every single person on my way that must be pretty exhausting to deal with. What's that like for you? And why did you just decide to go for it anyways, regardless of all the exhaustion, social exhaustion that comes with it.
I think for me, it began back in March of 2018. I just wanted to have more power over myself and my health in I think I had to realize what I call FSS fear, stigma and shame is a paradigm that people living with HIV We are constantly dealing with. And so I really had to look the beast in the face and say, You're not going to keep this power, this is for me. And so when I was able to kind of look within myself and name, what I want the world that I'm living now to be added look fear in the face. And I had to look shame and stigma and say, I'm taking back the power that was taken from me. And I think when I was able to do that, I realized that it wasn't just that, I think I was telling myself that I, I want to live my truth. And I don't want to feel a shame, for living my truth. This is who I am. Hear me, I am here. And I'm not going anywhere. And I think once I started to tap into, or getting past that fear, stigma, shame, that truth came, and then it's just empowering. It really is, I think it at points, it does get exhausting. But when I tell myself, that's what it is that it's it's a fire, it just doesn't go out. And I think because of that, that fire just ignites other little sparks, and it's shared. And when you see that happening, you can see it on the people's face that you talk to. It's like, Yes, this is this is why I should be doing it. This is why I should keep going. And I realized that I've been given many, many opportunities to live openly, have a supportive family have access to care. And for me, and this is, from my experience, it would be selfish to just withhold that power. Why not share it?
You mentioned family as well. And it kind of sounds like an obvious question. But to what extent do you think family's role is important?
Family support was extremely important. I grew up around my family all the time, they were the people that saw my DNS and saw what I was capable of before the world really put me in a place and Namie. So I think that's why it's important to have support from your family, because it's unconditional. I think being HIV positive and outspoken and advocating for it is unconditionally loving yourself. Sometimes, when I am tired, and that fire is a little low, I go to my support system, and my support system loves me unconditionally. And that gets me back in the ring. But not everyone like I mentioned before, and I everyone has that. That privilege, not everyone is blessed with a family that's going to accept them being HIV positive, that's not going to isolate them because they're positive or treat them differently or act a certain way around them. My childhood growing up, HIV wasn't talked about. It wasn't even with my family. And it's really surprising that we can come together and talk now. Because really, it was more or less mock, that if you're HIV positive, you are a sexual deviant. And you're, you're gay, like that's a bad thing. I think that was mainly a lot of my upbringing, and some of the things I had to let go. But to see my family witness firsthand what it's like, for someone living with HIV, I think it kind of made them think again and take a step back and educate themselves. And I love that they did that. And I feel like I was a part of that. Because of my YouTube channel helpful and victory talks. There was a week where I spent with each of my family members, just a few and I hope to do another week of different other family members. And we just talked about how they took the news and how they kind of how it affects them and how it changed their lives. So not only am I talking about my HIV story, but I get to talk about my family's part of it. Because any sort of news that we get, such as someone being diagnosed with HIV or cancer, or diabetes, they may be dying. It's not first trauma, there's always secondhand trauma as well to loved ones friends is a rippling effect. It's like the one a rock and a water you see the ripples like that's exactly what it is, and maybe one rock going in. But everything is being affected by
beyond this awareness approach that we talked about. What are in your opinion, some policies that you would like to see implemented within health establishments to reduce if not eradicate the social stigma?
I think it'd be nice if we can go back and relook at some of the laws that are geared towards people living with HIV. I think that just looking at those in rewriting them. I am in favor of having laws in place. But if someone who is undetectable, can't transmit the virus, I don't necessarily think they should face consequences because they are they are in care. They're taking care of their health, they're adhering to their medicine to remain healthy and happy. In some cases, some people can be Be a little malicious in relationships, hey, you just broke up with your partner and your partner's just mad. They want to do anything and everything that hurt you. And there are cases out there where individuals, that's their life, that's what they are experiencing. Or even someone by accident, I wouldn't say by accident, but spitting on an officer and then being charged with a felony that they were attempting to transmit the virus when we all know that HIV is only transmittable through blood, semen.
Like, is my knowledge about this completely wrong?
That is not the case whatsoever. So now we have to break down why that exists, and then build up the actual way HIV is transmitted. So you have his friends, like, yeah, you would do that? Why would you be smoking with someone who's HIV positive, like, like all these social, like, stigmas that are, you know, it's hard to really say that a law can fix them, when some of them are driven by behavior. In my speech, I talked about the Susan Sontag, who is a famous writer, well known philosopher on her book called illness as metaphors. And she talks about how in that, in that version, there's another preceding version, she wrote aids as aid and it's metaphors. But in that original one, she looks at with a critical eye, how society romanticize and dramatic ties, diseases, and she goes back as far as looking at the tuberculosis outbreak. And when it had happened, and, and how Tuberculosis was even seen positive in the light of poetry, one of the side effects of untreated tuberculosis is just malnourished, really skinny and thin. And she used that as one of her metaphors. And in poetry, you know, you have these poets talking about, Oh, her skin is fair, and she was so thin. But yet, she was coughing, you know, to death and couldn't keep, you know, or he was coughing to death. And he couldn't keep you know, his liquor down or things like that. It was just it went down the wrong pipe. And really, individuals were suffering from tuberculosis, but we were just kind of romanticizing how it looks and things like that. So she, I encourage anyone who is interested in just what I'm saying, to look into that, because it's, it really is comes down to how we, how we look at it at a behavioral and social lens, which leads to the legal. Yeah, and which leads to the legal because
people are the ones well, after all, it's people who are making these laws, right.
And then there's a whole bunch of barriers. So it's that and then you have someone who thinks that this type of behavior is deviant, that because you are having this type of sexual practice that you're deserving of, of the outcome. And that's why these laws exist to protect us from you. And now we're creating this other othering. So there's so many barriers that go into play, I will love to see, then this may be lack of my knowledge, if there are laws out there that are looking at behavior, I think, in order for us to make policy change, then that is effective is if we we invest what what money that we do have in the people, the grassroot individuals and organizations that is going into different communities and learning about what's really out there, instead of looking at something with a broad lens and saying this may help it. So let's let's invest in surveillance so that if someone's out of care, we can get them back and care. For me, that's not helpful. For me that's invasive feel like I'm like that as a number or a checkbox. So it doesn't work for me. And so it's different for everyone. I would like to see the investment more into organizations, the money's at least going to organizations and individuals who are trying to make the change.
During the event. There were some interesting questions. Yeah. Is there a particular question or two that really caught your attention that you think you want to revisit and go through with us?
I love the question that was asked of Orion, because he's a trans man. And how can a medical provider respectfully get the information from their patient about their sexuality, their gender, who they identify as I love that question, but what was even more insightful that I really didn't know about was when Linda Meier from Planned Parenthood, she was in a crowd and she answered that there is a method that's used where they look at the organs that are within an individual or in their medical record, and then they're able to identify certain services that they can provide you that individual that will be effective for whatever they may need that for. I love that question. The only thing I would like to add is, I want to thank Susan Carl, Jennifer, Steve As for letting me be a part of this podcast, you as well all the students staff that were in participation of the event. If you want to learn more and know more about me, you can follow me on my instagram account or my Facebook account I go by dusty lion awful and victory talks. And it was a pleasure to be here and talk to you today.
Random Acts of knowledge is presented by Heartland Community College. If you're interested in hearing more interviews about science, conservation, art history, or any number of subjects, subscribe to this podcast via iTunes, Spotify or audio boom. Thank you for listening
