This interview, conducted by by Nat Thomson, Simmons MSW Candidate, runs abridged in the June 2024 issue of the MPH Monthly.  Marlon Wallen has been involved with a number of organizations over his three decades long career, including HIV STOPS WITH ME and All Together In Dignity among others. Serving as a public speaker and advocate for those with HIV/AIDS as well as other marginalized populations, both here in The US and abroad, Marlon has a tremendous track record of advocacy and speaking truth to power.

Marlon, thank you so much for taking the time to talk with us. To start, I thought it might be interesting to trace your geographical path to where you are today in Boston, while originally you were born in Trinidad. Could you share a bit of your experiences moving around the world and the country?

Well, yes, I was born on the island of Trinidad in May, 1969. I moved to The States and ended up in New York City in April of 1988, when I was 17. I was there for about two years and during that time I became infected with HIV, sometime in early spring of 1990, at the age of 19. At the time, NYC was the epicenter of the AIDS virus, as most cosmopolitan cities were, and just like with COVID, the death rate was astronomically high. In the 1990s there were no medications to treat HIV, and here I was at the epicenter. When things go wrong like this, or with COVID, NYC gets hit really hard. So at that point, people were dying in large numbers, but it was just that outsiders could not see how bad it really was. I thought to myself that this place is going to kill me and I’m not going to let it have its day! At the time, my father was living in New Hampshire, so I headed there. It was not as bad yet at the time in New Hampshire. But, here I show up in very white, very rural New Hampshire and the people there did not really know what to do with me [laughs]. At that point, for example, paperwork in New Hampshire only gave you the options of black, white or Mexican, as far as race. I lived in New Hampshire for 10 years, from 1990 till about 2000 or so, and then Boston after that. But, it was while living in NH that I found my voice in activism, which led me to serve on the Title One Planning Council, a state run and funded group through the Department of Public Health, serving as what was labeled as "a consumer." or someone who uses the HIV/AIDS services on offer from the department. I continued doing this after moving to Boston as well. 

 You’ve become very involved in public speaking over the years, how did that come to be?

When events like AIDS or COVID hit, people can tend to panic. Everyone starts to blame other people, pointing fingers. At times things could turned violent, with people singling out the LGBTQ+ community, or black people, or IV drug users or sex workers. I spoke once about HIV/AIDS and a woman approached me saying that I should become a public speaker and a peer educator, saying that I would be great at it. I was around 20 at the time. Eventually, I agreed to be trained to do that kind of work, but at that time it was much less typical to put your HIV status out there; once you were a known carrier of HIV/AIDS people wouldn't come near you, touch you or much less allow you to use their dishes or bathroom. [Because of this atmosphere at the time] I was concerned about becoming a pariah in the community and things like this. I had to figure out if I could rise to the occasion and take on such a challenge. This was around the time of the MTV show, The Real World. Over the weekend, as I was considering whether to go forth or not, I saw the Cuban cast member Pedro Zamora speak on a college campus. This brought me to tears and then I knew that this was what I wanted to do as well. So I came back and said yes, and that really was the start of a new trajectory in my life.

It's interesting that you were inspired by another immigrant with the experience of HIV. Are there ways your experience as an immigrant might have shaped your reactions or viewpoint?

Like I said, I had moved from Trinidad when I was 17. By 19 or 20 I was infected with HIV while in NYC, but living in New Hampshire is when I really found my voice, of all the places in the world [laughs], especially coming from being born in the bush of Trinidad in 1969, with no running water, no electricity, no roads. I vividly remember once my mother left me in our little shack to get water from a local spring and when she came back a snake had come and wrapped itself around the headboard of our bed. But we didn’t live with our head down there, because everyone tended to look like you. Moving here, I learned about racism in this country and the psychological impact of being in a constant state of defense. I really had no idea what I was stepping into by moving here. It’s a good thing I have the roots that I have. You have to have a certain amount of fortitude in the face of all the tides that are pushing against you here [as a minoritized immigrant]. My mother was Hindu in Trinidad and so she was set up in an arranged marriage. But she had an affair with my father outside that arranged marriage. My biological father was involved in politics in Trinidad. My great-grandfather was the mayor of the town that I grew up in. So maybe that set me up for all this. That kind of bloodline set me up for trouble [laughs]!

When did you start finding yourself really observing the American healthcare systems? Something that you have developed quite a bit of expertise in at this point.

So that would be when I started my activism in the 1990s in New Hampshire, after I took the training to become a public speaker and educator. Eventually I was asked to sit on The EMA (Eastern Metropolitan Area) Title One Planning Council, which covered only up to Manchester NH, where I lived at the time. This was New Hampshire’s first planning council and was associated with Boston Title One planning. So there, we got to be representatives of our area. Eventually I moved to Boston and was part of the planning council here and got to see more of where the money was going. 

Are there any interesting observations in health settings of late that have stood out to you?

A hospital wanted me to sit in with some patients in a new geriatric unit they have established. I fall into that category now, being in my fifties. Their goal is to create a holistic approach to care, including social workers and several other offerings beyond just doctors. It’s about 1,000 patients, some are HIV positive, some struggle with alcohol and drug addictions, some are trans, some are gay. The staff there, in the course of their day, are doing back-to-back visits between these various populations. In the visits that I sit in on, they ask me to point out some of the needs that they might be overlooking. Oftentimes people will come in and talk about a broad range of topics, like walking the dog and other things [that aren’t plainly clinically significant]. I pointed out to the staff there that they may have missed an aspect of that particular person’s issues, in that they are probably just really lonely. Between the blood-work and the physicals [and these types of fundamental things] a clinician can miss out on the fact that a patient might just have nowhere to direct some of their energy [or socializing needs]. So the solution becomes finding that person an outlet to socialize, to play Scrabble, dominoes, cards, whatever they enjoy. This particular person was still sexually active as well, so, like, find a place where he can maybe flirt or meet someone. Sometimes it can feel like these kinds of things can be over the head of healthcare workers who have very repetitious days on the job where it's hard to filter out the important parts from the white noise. If this filtering from noise doesn't happen, connections to comprehensive health care may be missed.

So it sounds like you are infusing this program with quite a bit of street smarts, one might say.

Nowadays I see that oftentimes nurses have to work as social workers. The [roles] have been switched around so many times over the years, and eventually so much gets pushed back on the nurses. In the past, the funding would often be federal,  through the Ryan White care act, and then outside agencies might tend to handle social services, using those funds for social worker roles related to HIV/AIDS. There were social facilities outside of the hospitals. Nurses would handle nursing. Now nurses have to wear a lot of different hats for the exact same pay and that’s not really fair to them, at all. I’ve advocated for [having social workers and nurses being two separate functions] but I don’t have the power alone to make this change. Social workers have difficult jobs. Sometimes they really have to make magic happen.

I wanted to be sure to ask you about your presentation to The UN.

I was one of the researchers on a team studding the Multidimensional Aspects of Poverty in six other countries and then the United States. There were six different states participating in the study here in The U.S. and Massachusetts was one of those states. Out of this work, I was invited to speak by the Ambassador of Argentina and his consulate general. The focus was on migration and immigration. This was around the time where there was mass migration out of Syria and other countries in the Middle East into Europe, which was very much in the news and on people's minds.[In my speech,]I told the delegation that [more prosperous] countries are taking all of the best and brightest from smaller, less prosperous countries. Doctors, engineers, scientists, athletes. Then these [same prosperous] countries are coming back and setting up shop in these countries and taking the natural resources. But [these business entities from more prosperous countries] are not paying into domestic infrastructure, they are not paying into 401Ks, or retirement plans. And then they just pick up and leave like they were never there, often leaving countries in a state of poverty and violence. At the same time, these first world nations want to bar people from these same countries from coming to live in their prosperous country. I said that we were a package deal and we are coming, so you better deal with it [laughs]! It’s unjust to take from us but then not give citizens equal passage. Let me tell you, the [representatives] from the brown and black countries were clapping [laughs], and so the idea ended up becoming policy.

What is on the horizon for you in 2024, 2025 and beyond?

Something that’s significant to me is working with the Native American population. I would like to see us as a society collectively come together and help native Americans more. They used to have healthcare but they no longer have it. And when you look at the [small amount] of services they have access to, it’s ridiculous. They’re living among the rest of us and they don’t get what we get. You can live here as an undocumented immigrant and be housed and get healthcare and they can’t even get that, so what are we doing here? It’s a population that could use some help in healing from all the trauma and damage that this society has done to them. The trust is gone but I feel like they will be more apt to work with people of color. There is a need for allies. In my position and in my role, I don’t feel like I have any kind of special rights to be here so I have tried to work with [this population].

We thank Marlon so much for his time speaking with us!