Home / Features / The Calling: Ron Simmons on Us Helping Us and 25 Years of Activism
The Calling: Ron Simmons on Us Helping Us and 25 Years of Activism
Ron Simmons has led Us Helping Us for a quarter of a century. Now he's handing the keys to the next generation. On World AIDS Day he reflects on a lifetime of activism during an epidemic, and raising up the black, gay community.
Call it fate. Call it circumstance. But whatever led Ron Simmons to become executive director of Us Helping Us, People Into Living, it’s the community that ultimately benefited.
For nearly two-and-a-half decades, Simmons worked at the nonprofit organization dedicated to reducing HIV rates among black gay and bi men and pursuing a holistic approach to treating those who are HIV-positive. It was that attitude toward health that attracted Simmons, first as a client, then as a moderator for a support group, and finally into the post of executive director.
It was an outcome that was far from guaranteed for the young Simmons, who, as a youth contemplated suicide because of severe isolation and his struggle with his sexual orientation. As puberty hit, the other boys in the neighborhood began pursuing girls, something Simmons knew he had no interest in.
“I didn’t know what the hell was going on,” he says. “By the time I was thirteen, I was really a mess. I had no friends, I didn’t want to go outside. I was the sissy on the block. I was planning to kill myself, to the point that I actually told my parents what I planned to do, not because I wanted them to freak out, but because I wanted to explain to them so that when I did it, they wouldn’t be surprised.”
Simmons’ parents took him to a professional to deal with his suicidal thoughts. When the doctor asked him what was wrong, and Simmons admitted his feelings of same-sex attraction, the response was, “Don’t do that. You’ll get in trouble.”
Simmons decided to kill himself by stepping into speeding traffic. As he prepared to die, he suddenly heard a voice saying, “Don’t do it. Wait until you get older, things will be different.” It was the first time that Simmons had heard the voice. But it wouldn’t be the last.
“Around ’83, when I finished my classwork, AIDS and HIV are beginning to happen. So the question was, ‘Why should I be a PhD?'” he says of his doctorate at Howard University. “Because if I have the disease, I may only have six months to live, so maybe I should drop out of school, get a job, buy a car and enjoy my last days on earth. Not that I knew I was positive, but I figured I was going to be.”
In 1986, Simmons was riding a bicycle when he was hit by a car. He was knocked unconscious and woke up in D.C. General Hospital, where the doctor told him he was lucky to be alive. Left alone to wonder what had just happened, Simmons heard the voice again.
“It said, ‘I’ve got work for you to do, and you need a PhD to do it. Don’t worry about a slow, lingering death, because if I want you, I’ll take your life, see.’ I was like ‘Whoa!’ The accident was in October, and by that next May I was defending [my dissertation] because when…God tells you to do something, you’ve got to listen. So I got the PhD.”
Simmons started teaching at Howard University, and while he enjoyed his post at the university, the voice told him, “This is not the work.” Five years after the accident — and one year after testing positive for HIV, at the time considered a death sentence — Simmons heard about a meditation support group for black gay men who were HIV-positive. Though initially resistant, he attended the meeting and fell in love with Us Helping Us’ focus on holistic health for HIV-positive people and its various support groups.
“What made Us Helping Us unique was that we told people you could live with HIV, and we were the only black group doing it,” he says.
Simmons dove into Us Helping Us’ programs, even becoming moderator of a support group. In 1992, he was approached by the organization’s founder, who asked him to become the executive director. It was a job he would hold for 24 years, until announcing his retirement earlier in 2016.
Through grants, Simmons has managed to obtain funding for Us Helping Us’ operational and programming needs, continuing to work even while he was battling pneumocystis pneumonia and tuberculosis on two separate occasions. His commitment to the organization has been unwavering. On the brink of departing an organization he’s steered for almost a quarter of a century, Simmons reflects on the changing landscape of HIV/AIDS activism, and the adaptations necessary for nonprofits to stay relevant.
“The bigger problem is that the media is now saying AIDS is over, HIV is over,” says Simmons. “They know that AIDS doesn’t kill you because they can see on the streets that people are not dying. In the old days, you could see people walking around with Karposi’s lesions. You knew people who were in wheelchairs but were walking last week. You don’t see that anymore. Now, they take their pill, they go to the gym, they get just as buff, just as gorgeous as always.
“You feared HIV because there’s no treatment, it’s going to kill you. Once they have a treatment for it, then it becomes a whole different thing. Because they’ve got a pill for it now. One pill a day if you’re positive, one pill a day if you’re negative. They’re working on injectables, where they give you an injection and you stay negative for three months. So why do we need support groups? Why do we need all of this AIDS infrastructure if that’s where we’re going?”
METRO WEEKLY: Where did you grow up?
RON SIMMONS: I was born and raised in Brooklyn, New York, in housing projects called the Van Dyke Houses. We first lived on the fifth floor, and then, when my younger brother was born, we got a three-bedroom apartment in the next building. I have an older sister, who was here for the event with her children. Then I have a younger sister and a younger brother. They’re all up in New York.
MW:What was your family like?
SIMMONS: Very attached. I lived with my father and mother. My father had converted to Sunni Islam before I was born, so I was raised in Sunni Islamic fashion. So no drinking, no hanging out late at night.
MW:Are you still practicing?
SIMMONS: No, I stopped in high school.
MW:Where did you first attend college?
SIMMONS: State University of New York. I went there from ’68 to ’72. It had a profound effect on me. One, I came out. Two, I was involved in the student strike of 1970, and that profoundly changed my life. It was when Nixon started secretly bombing Cambodia and word got out. That’s the time that Kent State happened, when the military shot people on campuses. We shut down the campus and then we opened it the next day, so basically the faculty senate agreed to end the semester and gave everyone a pass/fail. We opened the campus the next day to our “liberation classes,” so we had classes about the war, classes about civil rights, classes about the Black Panthers. We offered childcare so that women in the neighborhood could attend the classes, so that was one wing. The second wing of students, I think we did like three publications, like weekly newspapers.
The third arm, which I was part of, was progressive faculty would invite us to their homes for dinner, and they would invite their friends over, and we would talk about why we were on strike and about the war and about student life and that kind of stuff. We’d go maybe 50 miles out up in Leyden, in upstate New York, where people probably hadn’t seen many black people. It would be me and maybe 20 students there and they would have dinner, then afterwards we’d all sit around and debate about the war and other issues. I remember, one time, I was confronted by a Catholic priest about welfare queens and this, that. You had to know your stuff, of course. That’s when I became an activist and became serious about my education.
MW:What brought you to D.C.?
SIMMONS: I came to D.C. in August of 1980 to pursue a doctorate at Howard University. It was a tossup between D.C. and Atlanta, but D.C. was much more progressive.
I knew I didn’t want to move back to New York or live in New York, because I didn’t like the contradiction of extremes between the rich and the poor. You could see it. You could walk past a place like a multi-million dollar condo high rise and have a homeless man sleeping right there in front of it. So I moved to New Jersey, got my first job working for the New Jersey Board of Education as a PR man and photographer. I lived at home and commuted for a year, then I got a car. Then the following year I found an apartment, and that was the last time I lived in New York City.
From there, I went back to Albany to get my Master of Arts in African history and a Master of Science in educational communications. My goal was to go to Africa to teach. However, I was advised that I should probably get my doctorate if I’m going to do that, so I worked for a year to save up the money to come to D.C.
MW:What was your first impression of Washington?
SIMMONS: D.C. had such an intact, friendly black gay and lesbian community. The gays and lesbians partied together in D.C. That was one thing that the city was known for. They would have these house parties and there was just no other place like it.
In my free time, I was working with Sidney Brinkley at Blacklight, the first black gay magazine. I was his photographer and I did the layout. Because I was his photographer, and because he had the only black, gay magazine in the country, we got invited to all of the A-list black, gay social events. It was a lot of great house parties at fabulous houses.
I was seeing a part of black, gay social life that most people may not be aware of. At that time, D.C. was known to be very cliquish. If you were not in that clique, you really were not part of the whole social scene. There would be social networks of men, friends who knew friends and maybe they’d decide to have an Independence Day event at someone’s lovely suburban home in Maryland. You could have maybe 150 guys, black, gay men, educated professionals show up.
Dr. Ron Simmons of UHU — Photo: Todd Franson
MW:How did you get started in HIV/AIDS activism?
SIMMONS: I got my doctorate in ’87. The deal I made with God was that if he would help me finish my dissertation, I would do AIDS work. So in 1988, I started being a buddy through Whitman-Walker and their buddy program.
Basically, at the time, there was no treatment, so if you got AIDS, at some point you would just decline to a point where you had to have someone help you get your food, cook for you, clean for you, clean you, and that’s what the buddy would do. Even just keep you company, because you were not on the social A-list. No one was talking to you, so you’d have someone come by once a week or call you who you could talk to.
In 1989, I resigned from the program. It’s interesting, because we would do a monthly group meeting at this townhouse in Capitol Hill, a little bit by Eastern Market over by the Navy Yard. There would be like maybe twenty people, all buddies, not that many black people. We would talk about our buddy experience and then plans for whatever. I announced to them that I was going to resign as a buddy because I was really getting burnt out. While I was at the meeting I said, “What I’d really like to do is I would like to set up an organization about holistic health for people living with HIV.” I hadn’t even heard of Us Helping Us at the time.
I had this buddy who was dying of HIV. He was a young black kid, maybe twenty-one. At that time, if you were positive, you got all kinds of perks, because you were dying. And I was trying to get him to approach his disease holistically. Of course, he is opposing it, because he’s suddenly getting perks. His mother knows he’s dying, and Whitman-Walker’s giving him a place to stay free and he’s getting free movie tickets and he’s getting food and whatnot. He wants to enjoy the remainder of his life, which is understandable, because he’s going to be dead in a matter of months.
And my mind said, “Such an injustice. This society, these institutions, would not have given this kid a dime or even cared about his very existence if it wasn’t for him having AIDS.” That bothered me. Then I realized that okay, if I’m not careful, I will look forward to him dying, because that way he’ll be off my hands. I’m just waiting until he dies.
MW:When did you first become aware of AIDS?
SIMMONS: You know the book For Colored Boys Who Have Considered Suicide? I’ve got a piece in there called “The Voice.” Basically, it was early ’80s, I had a friend — in fact, a former roommate — a gay guy who had moved to New York City. He was the first one to tell me about this gay cancer. My friends in New York said, ‘Hey, you heard about this gay cancer?’ and then in ’83, my first friend died. ‘So-and-so died’ is what you’d hear, because it was usually PCP [pneumocystis pneumonia]. I knew something was out there before the CDC came out with its announcement in 1981.
MW:What was it like living through the HIV/AIDS epidemic?
SIMMONS: It was a hell that was almost surreal, in that your friends were literally dying. It started out slow, but by the mid-nineties, my friends were dying. We’d be losing guys like maybe once a week. At the time, I was involved in Us Helping Us, so we were providing HIV services for positive people. I knew a lot of them.
In the early ’80s, AIDS was this gay disease, and everyone was afraid. Doctors wouldn’t treat you. The food would not be brought into the hospital room, just total madness, because no one knew what the hell was going on, and everyone was afraid.
If you were gay, it was really impacting you because these were you and your people, your friends, who were dying, but you really couldn’t talk about it. One, because a lot of people weren’t really out as being gay, so unless you were in a place like New York City or San Francisco where you were surrounded by a gay community, most people didn’t know what the hell you were going through, the fear you were facing. They were just reading about it in the newspapers and seeing on TV, but didn’t know that it was affecting you, that you might be gay, that you might be infected, that you knew friends who were dying and it wasn’t the time to tell them you were gay.
Then on top of that, the ministers began to say, “Well it’s God’s punishment because you’re being gay so you’re going to hell anyway,” so people really couldn’t talk about it.
MW:Did being closeted exacerbate the epidemic?
SIMMONS: Well, it didn’t exacerbate AIDS. AIDS exacerbated it.
MW:I just wondered if being in the closet made it harder to seek treatment.
SIMMONS: There was no treatment. There were no palliative measures. Remember now, we’re talking about the early ’80s. Treatment that was working didn’t come until ’96. AZT was killing people, and that’s why I refused to take it, despite doctors saying to take it, and despite friends calling from California saying take it. I was like, “Hell no.”
Again, I am educated. I read the book Poison by Prescription: The AZT Story. If you know the history of that drug, it made no sense to take that if you were suffering from HIV. Basically, it was a drug designed for cancer and the way it was supposed to work was it stopped the body’s cells from reproducing. That’s why they stopped using it, because it was killing people, because you’ve got to reproduce cells. The question is: why would you prescribe a drug like that to a person whose body is not producing T cells? It makes no sense, so I didn’t take it. Then they came up with D4T and these other drugs and they weren’t really working. Nothing was really working until protease inhibitors came out in ’96.
MW:When were you finally diagnosed as HIV-positive?
MW:How did it feel to learn you were positive?
SIMMONS: By then, it was a decade into this disease. I knew my friends who had died, we knew by then it was sexually transmitted, and I knew that I came of age in New York after Stonewall. I did it all. I went to the orgies, I cruised the pads of Christopher Street, I went to the bath houses, I went to the Continental Bath House. Frankly, I wasn’t surprised that I was positive. Because, again, by then I had friends who had died and I had friends who were infected and I knew we were all there at the same club at the same orgies doing the same things together.
Dr. Ron Simmons of UHU — Photo: Todd Franson
MW: How did you get involved with Us Helping Us?
SIMMONS: Someone mentioned it to me that it’s a meditation support group for black, gay men who are HIV positive starting on March 2. It was a Saturday, and that’s my birthday. Then I saw a flyer about maybe a week later about this meditation group, but I wasn’t going because, again, it was my birthday. I was like 41 years old.
The day of my birthday, I’m laying in bed thinking, “What am I going to do today?” The phone rings and it’s a friend, they said, “Hey, you heard about this group meeting at three o’clock?” I said, “Yeah, I did but it’s my birthday, I’m not going to be in the damn group.” I hung up, and I’m laying in bed and I’m thinking of synchronicity. I mean the very moment when I’m saying to myself, “What are you going to do today,” the phone rings.
Basically, I said, “Okay Allah, it’s obvious you want me to go to the meeting, so I’ll go to the meeting,” and that’s how I went. It was a very spiritual kind of thing because I wasn’t coming, but clearly the spirit said, “No, you need to go to this.” From that first session it was like mind-blowing.
MW: What were the support groups like?
SIMMONS: The groups were at Rainey Cheeks’ house, and would go for three months. Each week we received something different about holistic health. Body, mind and spirit. Body, about eternal cleansing, about nutrition, vitamins, minerals, herbs, the importance of water. The mind, stress management, mind/body dialog, how to meditate, how to visualize.
We told them there were three questions that you have to answer. One is: Are you afraid of death? Because if you are, then death will take you, too, because everybody’s going to die, so by being afraid you’ll just make your time that you’re here less enjoyable.
The second thing we would ask them is: Why do you want to live? Because your body knows that death is natural, so your having HIV and dying, that’s that’s the natural course of things, the body dies, so why do you want to live? It cannot be because you’re afraid of dying. Because that’s not going to work. We used the example of the grandmother who’s told that she’s got cancer, she’s terminal, she’s all about, “I want to see my grandbaby graduate from high school.” The grandbaby’s like seven. Okay. So the grandma does it. So your mental attitude, your mind, can control your body.
The third question was: Does your spiritual belief system aid in your healing process? If it does not, change it, because there are others to choose from. There are all kinds of religions, Christians, Pentecostals, Muslims, Hindus, Buddhists. Then we used the example of Tina Turner. The whole time she was a Christian, Ike was beating her upside the head. Then girlfriend became a Buddhist, she went to Paris, he went to jail.
MW: How did you become a leader in Us Helping Us?
SIMMONS: Rainey wound up getting burnt out after doing this stuff for a few years, so we told him, “Hey, this is too good to let go. Teach some of us how to do it.” I think there were maybe six of us, we went through two weeks of training, and then we co-facilitated with them through a 12-week group. Then we were able to have our own group at our own house.
In about a year it got to the point where we had maybe three groups going on in different houses, in different apartments. It was only for three months, so some of these houses had like a second and third group, so we had people that we were producing, eight to twelve people. To keep them all connected we would have a potluck dinner once a month for all the groups to come to. Since people are into holistic health, you had to bring a vegetarian dish because we didn’t like meat eating, so it forced a guy to learn how to make a broccoli casserole, or those kind of things.
So all of this is going on, and I’m teaching at Howard. Rainey comes to me, and asks would I consider volunteering as executive director of Us Helping Us? I said, “No, you’ve got to be kidding. I’m Dr. Simmons. I’m at Howard University. I’m making money. You have no money, come on.” And Rainey says, “I’ll pray on it.”
And I’m thinking, “Pray all you want, the answer’s still no.” Well, about three months later, my chairman calls me into his office and tells me that the university’s not going to renew my contract. Now I’ve been there twelve years, seven full-time. I thought it was because I was gay and I didn’t have tenure, but at the same time, it took me by surprise.
I called Rainey because I had to cry on his shoulder and he was my closest friend. I said, “Rainey, you won’t believe what happened. They just fired me. I don’t know what the hell I’m going to do.” He says, “Oh, that’s horrible. Maybe now you can be the executive director of Us Helping Us.”
I literally took the phone from my head and looked at it, because I was being set up. Not only is he not giving me sympathy, but he brings up this conversation we had three months ago, you know what I mean? Anyway, I agreed to do it. I said, “I’ll do it for a year until I get my unemployment and if we don’t figure out what we’re going to do by then, I’ve got to leave.” That was 24 years ago.
MW:What are you most proud of from your time at Us Helping Us?
SIMMONS: Developing what could be an institution to further the health and well-being of black, gay men, which is what our mission is. The fact that that support group in Rainey’s living room is now an institution, it’s an organization, an agency funded with its own building that it owns, its own programs.
MW:Was there ever a grant or program you didn’t get, or really had to fight for?
SIMMONS: Well, I think out of all the grants I’ve written, maybe I think there’s only one fellow grant we didn’t get, the very first one we went for we didn’t get. I think at one point we had, what, two or three grants from the CDC and we actually turned back one of them, told them it was just too much. To answer your question, it would probably be the grant for our youth program. It was a CDC grant, and it was for youth. The CDC put out an RFA, but it said you have to have at least five years of experience working with youth 18 to 24, and we didn’t have that, but SMYAL did.
So Bruce Weiss was there at SMYAL as the executive director. I called Bruce, I said, “Hey Bruce, I’m looking at a grant that’s got your name on it, okay? It’s from 18 to 29. You only handle kids, well 18 to 24, you handle kids up to 22, 14 to 22, right? Why don’t you go for this grant. You take the kids 18 to 22 and we’ll take them 22 and up okay?” SMYAL wrote up the grant proposal and they subcontracted us to work with people 22 and up. We did that for like five years, and when the grant came up to be renewed, I had the years of experience, so we went for it ourselves and we got it. That was strategic thinking.
MW:What’s something that you wish you had been able to accomplish?
SIMMONS: The negative side of having this big, brand-new building is that we are much too heavily grant driven. In fact, 85 to 90 percent of our $2.4 million budget comes from grants. That’s bad news, because that is a shift in money. You need to have almost an equal amount of [non-grant] money to really pay people the kind of salaries they deserve, to do the other kind of things you need to do to keep your agency up and running. I’m not good at the whole build a base, asking people for money, having fundraising events.
MW:Do you think that should be a priority for your successor?
SIMMONS: I would say yeah, we do need that. I think we need a person who can do the other part of the equation, to come up with unrestricted money.
MW: What qualities would you like to see in a successor?
SIMMONS: Well, definitely the quality about the unrestricted fundraising. That’s a definite, but I think the other thing I look for is that I would want the person, if I was talking to them — I’m not involved in the selection — to have a vision. I would hope that they’re not taking this job simply to maintain Us Helping Us, but that you have a vision of going beyond where we are now.
I tell people that one of the reasons that made me want to retire is that HIV prevention is simply not fun. Not fun, ha-ha, hee-hee, amusing, but the challenge of building a community, of dealing with any disease that’s killing your friends and maybe killing you. It was exhausting looking back at it, but it was fulfilling to wake up in the morning. Because it’s like, “Yes, I know yesterday I didn’t feel well, but I’ll be damned, I’m going to do this thing today.” You had the motivation.
Again, it was almost unheard of to have HIV positive, black, gay men — a population that was so marginalized and stigmatized because of their race, their sexuality and their disease — actually build an institution, where you got a staff, you got resources, and people look to you. I mean, that’s the fun part. I would hope that the new person also looks at it that way. Don’t just come to maintain, but to take it further.
MW: Do you expect the incoming presidential administration to cut back on HIV funding?
SIMMONS: I really don’t know what the next administration is going to do. I wouldn’t be surprised if they did, but then I wouldn’t be surprised if they didn’t, because I think there’s a difference between Donald Trump versus the people he put around him. The people he’s putting around him will probably want to cut it. I’m not sure Donald Trump cares either way.
MW:If federal funding for HIV/AIDS prevention and research does get cut, where does that put nonprofits like Us Helping Us?
SIMMONS: In a very challenging position. Some of them, to be honest, probably will not make it through. The challenge will have to be, and we’ve been doing this at Us Helping Us, is they’ve got to move away from HIV funding, because it’s drying up.
MW:If people can’t afford their drugs, do you expect to see a resurgence in AIDS like we saw during the Reagan era?
SIMMONS: I do not think the country will allow that to happen. Because basically, I don’t think that the people will allow him to get rid of Obamacare. In fact, if you listen to him now he’s talking about, “Well, [we’re] possibly going to keep…” I think they may find out having to keep more of it than they realize.
MW:When we talk about HIV as a “chronic condition” because it’s treatable, do you ever worry that it is giving people a false sense of security?
SIMMONS: See, this is the thing. We have to be relative about this. HIV is just a small part of a person’s life. If they’re dealing with insecurity, it’s not because of HIV. It’s because they can’t pay their damn rent and they’re facing lien holders. I mean that’s real. Even for black, gay men, particularly those who live in D.C. with gentrification the way it is.
It’s also relative, like, yeah, HIV is there and that’s threatening, and that can be dangerous. But in terms of my life as a black, gay man, that is really small. In terms of my insecurities, that’s really small. Stop and frisk is more insecure. I’ve got so many other economic, social, criminal justice issues, those are insecurities. That’s how I look at it, and I think that’s how for a young kid, he’s looking at it, too. It’s like, this HIV thing, I got my test, I’m negative. Maybe if I’m lucky, I’ll go and get tested twice a year, but that’s really not my main issue.
The main issue is, “How am I going to get a job? How am I going to get a place to live?” I mean it’s all of that. Not to mention what my family may be going through. As gay sons we tend to be the mediators, the ones that the cousins go through to borrow money, the ones that the mother says, “I can’t count on the other kids, but I can count on you.” You have to deal with all that, too? So, yeah, HIV is such a small part of your world. For that kid, I would probably say removing HIV money is the least of his worries. Because now that Trump’s in power, everything’s going to change.
To learn more about Us Helping Us, visit uhupil.org.
John Riley is the local news reporter for Metro Weekly. He can be reached at firstname.lastname@example.org
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