The titles and roles of activists may differ, but a good activist can be spotted by their passion and dedication to their work. Most of us choose our paths of activism based on the impact we want to have or life sort of decides for us by placing us in social locations where the only path that makes sense is one of resistance. High levels of recognition are typically reserved for men, the wealthy, or those who have a national profile. This blog series is not a remedy to this situation, but rather designed as a way to highlight activists and their justice work through brief interviews.
This installment is an interview with Sue Gibson, an independent activist from mid-Missouri. Responses were provided during a one-on-one radio interview, and this transcription was reviewed and approved by the interviewee prior to publication.
What is the Missouri HIV Justice Coalition? What does the coalition work on? What types of things does the coalition hope to accomplish?
It’s a coalition of organizations within the state and [it has] nationwide supporters as well, but you don’t have to be a part of an organization to join. There are people who are involved as individuals. We have the goal of updating, or modernizing, HIV laws here in the state. We have people in jail right here in Missouri because failure to disclose HIV status to a sexual partner is a crime. We’re talking 30-year sentences. It’s a very serious problem. You have to keep in mind that these kinds of laws were written decades ago when we didn’t have the information about HIV that we have now. We didn’t know how it was transmitted, we didn’t know how to test for it, really, and we didn’t have effective medical treatments; so the laws were written out of a sense of fear and panic, just trying to stop the epidemic in its tracks. Now, the laws are outdated because we have access to more information.
Besides sexual activity, spitting is a chargeable offense under the law. There’s no HIV in saliva, though there are still people who believe that today. Sexual activity in and of itself does not transmit HIV, for example a person may use a barrier method, or a person living with HIV may have suppressed their viral load to undetectable levels by taking their medications. People I know living with HIV are not out here being reckless because they wouldn’t wish it on anyone, especially not with all the stigma, and laws like this just contribute to the stigma.
Another point I’d like to touch on is that HIV does not have to be transmitted for a person to be charged. The threat of being accused of not divulging your HIV status can trap people in violent relationships. And how are you supposed to prove you disclosed? Do you take a notary with you to every sexual encounter, draw up the paperwork?
Currently, a person cannot be charged if they’re unaware of their HIV status. Only people who are aware of their HIV status can be charged for failure to disclose. The result of that is that people have to choose between medical care and legal liability. This endangers the public health. The law is supposed to protect the public health, but it is endangering public health.
Intention is not going to be removed (by updating laws). Nobody wants people living with HIV transmitting the disease on purpose because they’re angry at the world, and that doesn’t happen very often.
How do you expect the coalition’s work to impact people living with HIV and AIDS in Missouri?
Like we’ve discussed a little bit, people would be freer to seek medical care, because they wouldn’t put themselves at legal risk by doing so. Updating the laws would do a lot to address stigma.
If others want to become involved, how would they go about that?
We have a Facebook page: MO HIV Justice Coalition, and all of our information is there.  We also have biweekly conference calls on Friday afternoons at 1:00 p.m. CST.
How did you become involved with the coalition?
Well, it’s been a couple, or three years, I think. I was on a road trip with JMO (Jeanette Mott Oxford, the executive director of Empower Missouri, which is the organization that houses the coalition) for a conference.  We were doing the “get to know you better” chat in the car, and when she found out about my career as a registered nurse at the height of the epidemic, she proposed that I might be interested in the coalition. I had no idea the coalition existed. I did not know about these laws, being fairly new to Missouri, and was thrilled to get involved.
You have various roles in your activist community, and those roles illustrate that you’re multifaceted, so why have you chosen to not only organize, but organize in so many different spaces?
Well, I did not choose, but so many things need fixing, and you know somebody has to fix them. I happen to care about people. I don’t like seeing people suffer. So, when I see that there’s something I can do about it, I jump in.
What have been the guiding principles of your work through the years? Have these principles changed? If so, what led to these changes?
My guiding principle is to do no harm and do good. I know I’m not the only person who cares about people, but there are a lot of people who both care about people and are a little bit afraid to step out of their comfort zone and draw attention to themselves in a way that they might receive some negative feedback from the community. I think I got over that in the ‘80s when I had only been out of nursing school for about two years when the HIV epidemic hit. I lived in Dallas, which has a huge gay community, and I worked in a very large county hospital. Besides, working at the county hospital, I was a member of the LGBTQ+ community and we were about to start up an organization called GUTS (Gay Urban Truth Squad).  At our second meeting, one of the guys said, “You know, we’re hearing from our friends in San Francisco and New York that we really don’t have time to spend on GUTS and we’re going to have to start an ACT UP chapter,” so we did. We started up an ACT UP chapter in Dallas right away and hit the streets.  It was a public health emergency, so it wasn’t a time to be timid or reticent.
My principles have shifted over the years. When I moved to Missouri about 18 years ago, it was the first time I had lived in a state capitol, and just being more aware of the dangerous laws they were passing and trying to pass to harm women … the sense of urgency returned. Then on November 8, 2016, it intensified [with the election of Donald Trump].
In what ways would you like to see support for you and your work improve?
I would like for more people to want to step outside of their comfort zone, more people to seek training, to attend these wonderful webinars, attend events organized by fabulous organizers in Missouri. Actually Missouri has some of the best progressive organizers in the entire country. People are working on every issue: racial justice, criminal justice reform, reproductive justice, unions, healthcare in general, and maternal and infant mortality.
Oftentimes, people reflect on how much their work has impacted others, but how has your work over the years impacted you?
Well, it’s made me feel empowered and not helpless in the face of all these assaults on marginalized people. I don’t feel dejected when I’m taking action.
Activism or advocacy of any kind is taxing, so it’s common for people to look at me in awe, but I rarely feel like I’m doing enough. Is this feeling something you share? If so, how do you overcome this feeling?
I hope I’m being genuine when I say this, but I do feel like I’m doing enough. It’s not like I’m always … I mean I am always looking for new ideas and new tactics, but I do think I’m doing enough. I got to this feeling by failing at self-care, so I know I’m not setting aside the time I need to do self-care. I hate the awe, because I wish people could do what they need to do so they can be in awe of themselves.
What do you want your legacy to be?
I’ve never had time to think about that. I don’t want them to have time to look back. Well, I can’t say that because it’s important to look at our history and see what worked and what didn’t, so if I can just be one of those people whose work can be built on then that would be good.
Sue Gibson is a feminist activist, a retired registered nurse and clinical trials coordinator in infectious diseases, and has been living with HIV for 30 years.