Terri Wilder: Sharon, can you tell me about when you remember the first time you heard about AIDS?
Sharon Day: Yeah, it was in the ’80s, and I was at that time working for the state of Minnesota as the chemical dependency program manager. And we began to hear about reports of people on the coast contracting this, you know, they called it then—it was the “gay disease” or the “gay plague.” And those are my earliest memories of it.
TW: So when did AIDS either personally or professionally enter your life?
SD: Yeah, well in 1987 I had two people come to me. One was a woman, her name was Carole laFavor. She was an Ojibwe nurse. She was a lesbian. And she came to see me and she said, “I have AIDS. And there are no services for Native people. And if we go over here, we have to deal with racism. If we go to this Native organization, you know, we have to deal with homophobia. What are you going to do about it?” And it was a logical step, because I was working with chemical dependency programs at the time. And then the second person, I had a phone call early one morning. It was my brother who lives in the state of Washington, and he said, “You know, it’s the big A. Can you stay on the phone while I get mom on the phone?”
And I said, “No, let me go over to her house.” And he said, “OK, call me when you get there.” And so I remember a very tearful ride to my mother’s house on the other side of town. And I tried to compose myself before I went in, because at that time, 1987, if you had AIDS, you were going to die. And so I went in, and I told my mom, “We have to call Michael,” and she dialed his number. And she said, “Mhmm. OK.” And then she said to him, “I want you to come home.” And she hung up, and she looked at me and she said, “I was afraid of this. Get your sisters over here now.” And so then I called my sisters and then had to deal with all of their—you know, the same feelings I had—of anger and grief and, “What are we going to do?” kind of stuff. So those are my personal experiences.
TW: Why did your mother say, “I was afraid of this”?
SD: Well, because she knew my brother was gay. Right. And it was being in the news as being this gay plague, again, at the time.
TW: So did your brother come home?
SD: He did. He did. But not right away. He came home, and my mother was sick, in the spring of 1990. My mom had a couple of heart attacks, and he came home before she had a heart surgery in May. And then he didn’t come home again until, I think it might’ve been 1992 or 1993. And by then, the Task Force had been formed. It was a volunteer organization at the time. And then we hired our first staff person in 1989, and then I left my position at the State of Minnesota and came to work as executive director in May of 1990. And so I think it might’ve been 1992 and 1993 in New York City, there was, at the American Indian Community House—was the first conference for—I think the words used at that time were men who have sex with men—at the American Indian Community House around HIV.
And so we had started a youth theater ensemble, and we were invited to go and present the play. And my brother came from Washington. He was really kind of on a downward slide. And he said he wanted to go with us, and I said, “Well, you can come, but you have to be sober.” And so he came, and we went to New York City, and he stayed sober. When he got dropped off at my house that morning about 4 o’clock, he kind of reeked of alcohol and I told him to take a shower. We had, I think, two vans—six kids and four or five adults. I think, if you can imagine being hung over and driving across country. That was the shape he was in. But when we got to New York City, I told him, “Don’t even look at anything. You got to stay sober or I’ll leave you here.” And he said, “OK, I’ll stay sober.”
And he had already, here in Minnesota, gone to several treatment programs before he left for Washington. And so, he had tools—whether he chose to use them or not, it was up to him. So he came back with us. That was a two-day conference, and it was probably the first in the country for gay Native men. And when we came back home, I told them, “I’m going to honor the Earth, powwow, in July a couple of weeks, and I’m going to distribute condoms and have a table.” And he said, “Oh, I want to go.”
And I said, “Well, you know, you have to stay sober.” And he said, “OK.” And then we came back and they said, “We’re going to have a sweat lodge.” And he said, “I’m going to do that.” And I said, “Well, you have to stay sober by the time we get to it.”
My brother’s still alive. He actually never took any of the antivirals. He did participate in some Native traditional ceremonies, like I said, sweat lodges and other ceremonies. And I don’t know, he’s just one of those people who, you know, long-term survivors without any other Western medicine. And I’m not going to say he doesn’t use antibiotics if he gets bronchitis or something, but he’s never taken any of the antivirals.
TW: What was it like for him when he got diagnosed, in terms of the Native community? Was he out? Did he tell other people, or was it just something that he only told the family?
SD: He was diagnosed in Seattle. That’s where he was tested, and he tells a story about it—he doesn’t remember too much, except that he did not feel supported. And so he was living out there, and he didn’t come home for several years after that. But when he did come along, he’d worked for us for a short period of time. Maybe a year, 18 months, as an outreach worker, and he used to wear a red jacket, whether it was the summer or the winter. He wore a red jacket and he carried a backpack, and he would go up Franklin to Nicolette and then come back down. He did it twice a week. And so, he got to know all the women and men, and he just distributed condoms, and we weren’t even doing testing then. People could go get tested, but we weren’t testing, and they got to know him. And he wasn’t even out. My brother was very closeted. Everyone knew he was gay, but you know, he was very closeted up until the ’90s.
So Carole laFavor also was a Native woman who was a lesbian, a nurse, and she also did not take any antiviral or the cocktail. She passed maybe four years ago, but she also never did take any HIV medication. And when she [died], it wasn’t from an HIV-related illness—she returned to using drugs, and that was how she contracted it in the first place. And that’s what she died from.
TW: Did she also go to powwows and sweats and some of the things that your brother did?
SD: She did more. In 1990, December, she called me up, and she said the doctor had told her, “Go home and put your affairs in order, and you probably have six weeks.” And so she called me up and she said, “I would like to be doctored by a medicine man.” And so I said, “Well, I think you need to go down to Prairie Island and get tobacco to Amos Owen.” And so she did. And then she called me up and she said, “There’s going to be a ceremony for me.” Like at midnight, it was during the New Year’s Eve powwow. So it might’ve not been on the first, but it might’ve been like on the second [day of January]. But it was during that period of time. And so I went to that ceremony, and they brought medicine, some kind of medicine from, I think it was Montana, and these guys, there were about four of them, and two of them were from South Dakota.
They doctored her and they gave her medicine, and they said, “In four days, you’ll know which direction you’re gonna go.” And so indeed, in four days she did know. She spent the next four years crisscrossing the country doing HIV prevention, and we made a film called, Her Giveaway: A [Spiritual] Journey with AIDS. And that film and the proceeds from that film and another we did, called, Honored by the Moon—which was footage that was shot during the first Two-Spirit gathering in 1988 that was here in Minneapolis—proceeds from those films kept the Task Force going at that time.
TW: So the community that you’re a part of has a lot of tradition in how they take care of their people. And I’m just wondering if you can talk a little bit more about the Native community and views on people being gay, or you know, if those were ever challenges for people in the community and helping somebody who has HIV or AIDS.
SD: Certainly, every community has individuals, members who have certain prejudices. On the whole, I would say that in the Twin Cities community—I mean, I came out in 1984 in kind of a public way. I was in the St. Paul Human Rights Commission, and so it ended up being on the front page of the Metro section. And there were people, I think, whose impulse it was to sort of turn away. But in the end, from the time I was 18, I worked in the community. And so when I came out, it was in my early 30s. I already had, I’d worked at the Indian center in St. Paul. I worked with kids, kids who were adjudicated “delinquent.” I was working at the State of Minnesota, working with all the tribes.
And I think, in some ways, your work speaks for you. There were some difficulties in the beginning, but I think that quickly faded. And in the community, we’d formed a small group—Minnesota American Indian LGBT Organization, I can’t remember what we called ourselves, but we had the first gathering and that was here in 1988, and 90 people were here. And not just Native people, but it was also during a national NWSA [National Women’s Studies Association] conference. And so people like Barbara Smith came, and Merle Woo, and Beth Brant. Local political folks opened it up. Gosh, I’m slipping on his name right now, but he was a city council member—Brian Coyle. Brian Coyle did the welcoming to us. He was a city council person who was an out gay man, you know, who had AIDS.
I think that the important thing that helped us the most was that every single one of us worked in the community: Gay rights. HIV. Gay marriage was not our primary mission. Our primary mission was to be in the community and to do whatever work it was that we did. So it could be that in fact, I remember like in the late ’80s, being over at the Indian center on Thanksgiving, right. And there was a big dinner for people who might not have had family, and I looked down the way, and every single one of us serving the meal, every single one of us were gay Native people.
And so I think it was because of that, you know, that we didn’t just care about gay rights. We didn’t just care about gay marriage. We cared about moving our community forward. And I think that’s what’s led to a lot of public acceptance of us. And we also had elders who were supportive to us. You know, before I came out, there were a number of elders that I worked with, and I didn’t change. I was still the same person. And they were still the same people too, who were my teachers or my guides, were my mentors. They continued to be there for us. And when we started the Minnesota American Indian AIDS Task Force, that was the first thing we did. We went to elders and we asked them to help us. And so I think we had a lot more acceptance.
I didn’t figure things out until I was in college and taking courses in human sexuality. If you’re working in the counseling field, you have to take all those courses. And I asked myself the question. And finally, you know, like after a couple of years, I decided I knew what the answer was. I’d never been in a relationship. I just—it was a political decision. But my brother, he knew since he was four years old, and we all did, but we never talked about it. And so when I came out and I had a coming out party, you know, it was something that he never would have dreamed of doing, because it wasn’t the right—I think it was very different for gay men.
TW: So were people supportive of you getting involved in HIV? I guess I’m wondering if you ever got any criticism about your involvement, particularly in helping gay men with AIDS?
SD: Oh, sure. In fact, I remember a friend of mine in the mid-’80s, talking about, “When have gay men ever supported breast cancer issues?” And lesbians had a higher percentage of that. And participating in some of those conversations. But when two people that you know so well—and your brother comes to you and says, “It’s the big A, Sis, help me tell Mom,” how can you not respond to that? In my professional life, nobody was surprised. I lived my life up to that point—you know, first thing was working with kids in the juvenile justice system, and then chemical dependency. Everyone already saw me as being somebody who was going to advocate for those people who were more vulnerable.
TW: Can you tell me about the early years of trying to help people with AIDS, particularly gay men with AIDS? Like, what were some of the challenges in the early years of your work?
SD: Oh, well, you know, resources. And there’s never been an effective public health campaign that’s been sustained that was targeted to gay Native men. In fact, we were the first organization in the country to have posters that were designed for gay Native men. And we worked with an artist, a Native artist, contracted with them in like 1990, 1991. And he did a series of very beautiful posters. And there was in some ways a little coding, but if you were a gay man, you knew that we were talking to them.
There was one, I remember these Native men and they were in a circle, but they had like tights. There was a flute, and it said something like, “Let’s make beautiful music together. Protect yourself.” Things like that. Things with the rainbow. And also my friend Amber, we also did the first brochure targeted to lesbians in the country. I mean, not Native lesbians—lesbians, period. We decided early on that we weren’t gonna tip-toe around the issue, because if we did that, we’d go into a community, a reservation to have this conversation, and unless we brought it up like straight upfront, everybody was going to be like waiting for that shoe to drop that says, “And now we’re going to talk about anal sex, right?” So the board of directors, myself, a couple of staff people, we said, “We’re going to deal with this immediately, up front.”
And even our board was mostly allies, you know, Native people who were allies, and we took them to a gay bar. They had to learn a whole new language. I remember taking a couple of them, both had master’s degrees in public health. I think we went to Rumors in St. Paul. And they never took their coat off. But they learned, and they had to learn a whole new language. So right from the get-go, all of our policies were like, family is who you determine family, not your biological mother and father. Because many of our clients who were also active drug users, they were estranged from their family, and we became their family. So it was that kind of, this is what we’re going to do and this is how we’re going to do it. You know, we’re going to be out front about the largest percentage of our population who was dealing with this issue, you know, our gay men.
TW: So what are you most proud of from the early years of helping people?
SD: I wouldn’t say this has anything to do with being proud, but I think the best thing that we did was to be there for all of those people who didn’t have family.
I remember this guy, George. When we first started working with him, we had to go meet him someplace, you know, at a coffee shop or something. He wouldn’t even come down Franklin Avenue, which is sort of the Indian part of town. Right? Yeah. A lot of feelings about, you know, low self-esteem stuff around his racial identity and [being a] very closeted gay man. Eventually, George started coming to the office, and then he would answer our phones. He’d volunteer to answer our phones and was not so good, because he’d answer it like this: “Task Force! What do you want!?” You know, we helped him get enrolled at Wide Earth, and we were with him when he died. And I think about Bertha, who wasn’t gay, but she had been a police officer in South Dakota, Pine Ridge, and she didn’t want anybody to know. And then I was going to, I think it was someplace in Nebraska, and I was going to speak to a psychologist and Bertha said, “I want to go with you.”
And so we went, and then we came back home and I was speaking someplace here in Minnesota and she said, “I want to go with you.” I said, “Are you sure?” And she said, “Yes.” And then we had an outreach position available, and Bertha said, “I think I could do that job.” And I said, “Well, when are you going to apply?” And she applied. Before she died, there was a seven-minute piece on her on public television, telling her story. And so yeah, Fred was with us for up until 2013, and I was away walking, and at lunchtime I would check email, and there was an email and it just said, “Fred.” So my daughter’s with me, and I said, “Could you just read this email for me?” And she read it and she said, “I’m sorry.” You know, Fred, he used to tell so many jokes. He’d say he was arrested for “DWI”—driving while Indian. Fred did everything wrong. I mean, I had people, clients, people we worked with who did everything right: stopped using drugs, found stability in their life, took their medication. Some of them were on their fourth treatment regimen. You know, some of the drugs make people really sick in the beginning. But they did everything right, and they still died from complications. But Fred did everything wrong. On the first of the month, he drank and his family would take his money away from him. And sometimes he had housing and sometimes he didn’t. But we did get him to not cuss or swear at doctors and nurses, and Fred lived a long time.
TW: I’m curious about health care in terms of, if you refer your clients to a Western health care provider.
SD: Oh, sure. I mean, [when] somebody tests positive, we’ve always done this, is refer that to one of the HIV clinics. And we were fortunate in those early days, and there were infectious disease docs at HIV specialty clinics, and we always referred people there. And even the people who didn’t, who chose not to use Western medicine, they went. They got the labs. It was their choice. And most of their health care was done by an Indian Health Board or Native American community clinic. But they all had HIV docs.
TW: I also wanted to ask a question about death in your community, when a Native person dies, what is the belief around death and that process?
SD: It’s part of the circle, right? We come into the world, we’re in the circle, and our spirit enters this physical vessel, and when we leave, we shed that vessel and our spirit continues on.
TW: When a person dies, is there a ceremony, or is there some certain ritual?
SD: Well, of course, every culture has rituals around death and dying. And ours are just different. Ours are more accepting. It’s enough for a minister to proselytize. They’re more sort of like a Quaker gathering, you know, where people talk about the person. And we have singing and songs. In fact, I had so many people—Keith Gann, he was the first gay man to speak at a National Democratic Convention. He was a white gay male. And he and I were friends. We participated in a lot of the activities around the area.
At the 1988 Democratic National Convention, I have a picture of us with signs, with T-shirts that said, “Silence = Death.” And Keith was the first gay man to be able to speak at a national convention. And he died shortly after that, like within probably a couple of years. But I learned so much from him about like, “Never give up—keep on falling in love.” I learned a lot from him. By the time Keith died, I’d been to so many Christian funerals that I swore I was never gonna go to another one. But when Keith died, I had to go, and it was at the chapel at Macalester College. And he was a Quaker, and so it was a much different kind of ceremony. When my mom died, it had been against the law for us to practice our religion until 1978. And so when my mom died, she had a traditional ceremony. We sing, we dance, we celebrate their life, which is very different than, you know, a minister using the opportunity to preach at us.
TW: Is there anything that you would do differently back in the early days, now that you have information?
SD: No—I think no, but I’ll tell you this. I’m one of the last few people still working in HIV and started back in ’87. Most people have gone on and done other things, and I continue to be here. What upsets me the most today is how all of the care and treatment have been taken over by the medical profession. You have to have medical case management. In the early days, we could take people on a retreat. We had funding where we could take them on a retreat with our traditional healers. We could build a sweat lodge, we could take them in the woods and show them different plant medicine. You know, it’s like, can we do that today? Hell, no. Because everything has to be evidence-based and based on Western science, not based on what we know.
The thing that kept Carole laFavor alive when the doctor said, “Go home and prepare to die,” was Indian medicine, Indian plant-based medicine. And unless they can study it and put it under—even like with our sweats, this doctor once said to me, “It’d be really great if we could look at the blood cells before they went into sweat.”
So that’s the thing that irritates me today is, the cultural groups that we used to be able to do, those are all gone. All we can do now is test and navigate. And there are no more people living with HIV who are working in programs. You know, it’s all MSWs [Master of Social Work degrees], and even the doctors. Everything we did in the beginning was based on a movement, and everything we do today, you know, is based on medicine, Western science. So me, I long for those old days, where people with passion worked in this field. Now it’s just another—it’s like diabetes, and it’s not like diabetes.
TW: Given the constraints of today’s funding and these constraints of not recognizing culture, how do you make sure that the people that you serve have the opportunity to experience the things that you’re talking about in Native culture?
SD: If I tell you that—we’re the last Native community organization that’s still funded by the CDC [Centers for Disease Control and Prevention] directly in the country. We do the best of our ability with what we have and eke what we can out of non-CDC funds, but certainly not at the scale that we did when we had HRSA [Health Resources and Services Administration] funds, and where we were funded to do some of that cultural work. Even with transportation. We have to raise money so we can provide transportation to our clients, because it’s not in any of our state grants or funds that we raise separately from grant dollars.
TW: You’ve been at your organization for a very, very, very long time. Do you ever see yourself retiring?
SD: Right now, we’re in the midst of a capital campaign to build a new building. And we hope to break ground this summer. And once that structure’s in place, then I’ll be ready to do something else.