(00:00:00) I went to about five different doctors and They did not really expect that. I would have the AIDS virus (00:00:10) stereotypes about who carries the HIV virus Melt Away upon meeting Mary Ann acquired woman of around 30. She doesn't give her last name Mary. Ann has never been an intravenous drug user and has been monogamous in her sexual relationships. She sits in a small office at the Minnesota AIDS project and talks about being infected with the human immunodeficiency virus the virus which causes (00:00:32) AIDS at first. It was real difficult the first year before I knew what this was. There was no reason to even question it or check into it. And so I had this terrible cold for about six months that wouldn't go away a constant called and they just said well it's, you know, we can't tell you really what it is. We don't know it's probably just a virus that'll go away (00:00:58) area now has AIDS related complex or Arc a precursor to full-blown AIDS. She did not learn. What was making her sick until an old boyfriend called? (00:01:08) I hadn't seen him for about a year or so and he called to say that he had the virus and that he thought I should be checked that I might have it too. And of course this kind of started to connect and make sense. You know, I thought well, maybe this is why I've been sick and it was real scary to even admit that and consider going and being checked, but I know that's what I had to do. So that's probably do is getting getting informed by (00:01:44) your former boyfriend. (00:01:46) Yes. I found out that finally that he was bisexual and that's how I got the virus. (00:01:57) The number of women with HIV is steadily increasing and in some parts of the country women are the fastest growing group of people getting HIV in Minnesota two-thirds of women with HIV got it through heterosexual contact Rhonda Lundqvist is Client Services director for the Minnesota AIDS project nonprofit Statewide education and service (00:02:16) organization. Just being a woman. I think especially a white woman. I think that the first Relations that were hit remain very strongly in people's minds and remained very strongly as other it's not about people like us it's about people like them. It's not about mainstream America. And so I think that there are misconceptions that you can always tell someone who's bisexual you can always tell somebody who's a drug user and that those people you can always tell who they are and so they're not a part of our lives and that's not and that's not true. I think that there's a lot of misinformation a lot of denial a lot of stereotyping that feed into this whole being into this whole issue. That's affecting Mary Ann (00:03:00) Mary. Ann says her husband and mother are supportive but that other family members are distant. They don't call to talk Mary. Ann says she struggles inside herself to accept her condition. (00:03:10) At first it was really scary the first couple years I kept waking up. With anxiety attacks and I had been brought up in a religion where there were a lot of thoughts in terms of you know, if you do want anything wrong you're going to go to hell and I would have so I would fight myself with on those kind of things a lot during those first couple of years, but then I've gotten much more peaceful about it. And I can't say I'm quite there yet. But I feel like it's gradually becoming more and more peaceful for me to accept it (00:03:58) people's reaction to HIV and AIDS seems to reflect the degree of misunderstanding about the disease of fact soon discovered by Angela. (00:04:07) The kids have been into fights behind it and you know, and it's kind of hard for them. What kind of things are people saying to them. They just saying your mom has AIDS and keep my kids can't play with other kids because I have AIDS and notes left on the doorstep. They used to be stuck under the door, but then you know that stopped carving on my door saying AIDS live here and stuff, you know stuff like that just a lot of rudeness (00:04:35) Angela. She asked that we not use her real name is in her 30s a slender woman with glasses divorced. She lives in a Twin Cities public housing project with her two. Children. Angela has never used drugs but doesn't say How she got the virus the new looking furniture around her apartment has warm tones. There are family photos on the walls from the recent past when Angela was a businesswoman earning a good salary her quiet voice fills with emotion and she talks about her reaction to having the HIV virus. (00:05:03) Well in the beginning, I didn't believe it. I just said, oh, well, it couldn't happen to me. It couldn't happen to me. And why would it something like that happen to me? And you know, I fought you know, I kind of was bitter. I was at first I wasn't bitter at all because I just thought it was a mistake and one when it really hit me and I really realized that hey this is what's happening. I am HIV positive. I just went into shock. I went just nuts. I went nuts. I'd having fits a crying spells all the time. And I just, you know, emotionally I couldn't deal with it. You know, I had no one to talk to about it. I feel like I was suicidal for the most part. If I was able to open up, it would be better for me and my children but being that like I said, I'm afraid to I start crying I just can't deal with anything. I just like myself off from the world and it's hard. It's really hard. I just feel like commit suicide but then I kept thinking about them and I worry about them because no one's going to raise him. Like I want him to be raised. I'm real proud of (00:06:12) my kids. You know, Angela has told her teenage daughter that she has HIV but not her younger son. Both children are healthy. But Angela worries that her daughter doesn't want to talk about the situation. She says both children faced pressure Prejudice and ignorance from their peers and from Neighbors as for the rest of her family. Angela has not told them (00:06:32) no and I don't plan on it anytime soon. I try to you know hit around to them and you know question when I every time I get a chance to say something that might would spark something to see where their head is at when it comes to HIV and AIDS and if I don't get Good response that I know it's just not the right time. I feel like when the time comes I'll say something. Other than that. I (00:06:54) want Angela's isolation Is Not Unusual the AIDS epidemic is kind of a double whammy for women. There's the stigma of carrying the virus and then since women are usually a family's primary caregiver. They often must deal with a child or partner who is also infected may be dying Frazier. Nelson says society's attitudes and woman's own fears combined a heightened the stigma isolation and burden Nelson is HIV Services planner for the Minnesota Department of Health (00:07:23) their major fear, when we asked them, you know, what are you really scared about was losing their health? Because if they were sick, they wouldn't be able to take care of the other people and their lives. So these women are isolated. They're very fearful. They are very judged often times. People say women as vectors. They say all these women. They're the ones that are passing it to kids right? So they're In that regard and women know that they know that they're judged so it's difficult for women to come forward and until women start coming forward. It's going to be difficult to start creating services for them. But if we don't have the services that can't come forward. So it's a catch-22 really (00:08:05) as of March 1st 1990 to the State Health Department New of twenty two hundred and fifty people in Minnesota who have been infected with HIV since the AIDS epidemic began several hundred already dead of that total of twenty two hundred fifty more than 200 or about 10 percent were women. The proportion nationally is about the same Nelson says the statistics do not account for unreported cases or people who are diagnosed elsewhere and returned to Minnesota to be near family friends or Aid Services those numbers. Also don't tell of another troubling Trend when compared with men women with HIV are often not diagnosed until much later in the progression of the disease. That means that women are often much sicker by the time they are diagnosed. Estelle is regional coordinator for the Minnesota AIDS project in Duluth. She says the evidence of late diagnosis of women with HIV can show up in life expectancy numbers like these from a Newark New Jersey study. (00:09:00) The one statistic that sticks in my mind is that a black woman has a 30-day life expectancy after being diagnosed with AIDS. Which Compares two three and a half year prognosis for a white man? Why after diagnosis because the women are finding out later that they're sick. They're very very sick before they're even diagnosed for one thing. Another thing is women don't realize they are at risk for HIV (00:09:35) infection diagnosing. The symptoms of AIDS in women is Complicated by the similarities with other conditions yeast infections or pelvic inflammatory disease or precancerous cells in the cervix can be AIDS related but they are also relatively common gynecological problems and are not always signs of HIV infection Rhonda Lundqvist of the Minnesota AIDS project. (00:09:57) I think some of it is understandable. For example, yeah yeast infections urinary tract infections. I mean is all kinds of women who have you know, what will have a chronic problem with those and so I do think that some of it is understandable, but I think It just underscores this issue just underscores the importance of continuing education and not just AIDS education for the general public regarding symptoms, but also education in the professional communities in the medical communities you asked earlier if it was part of a sexist medical system. I think that it's not specific to AIDS but I do think that it is part of a sexist medical system which which tends to have most of its research and energies focused on on a norm being men. (00:10:48) I (00:10:48) am a woman affected by HIV and AIDS and we were diagnosed in (00:10:55) 1989 Nancy. Simon has traveled from her small southern Minnesota town of vesely in Rice County to a South Minneapolis Catholic Church. Her audience is a group of 30 lay ministers who have gathered this Sunday evening to sing pray and learn about AIDS. (00:11:13) I became infected through my husband which became infected through a blood transfusion. He received and 1983. He was given nine units of blood. And he passed it on to me and I passed it on to my daughter who is 4 years old now, but at the time she was 18 months old and it was through her that we found out that we were carrying HIV and (00:11:44) AIDS Nancy Simon knew she had the HIV virus long before she went public with her story in a Twin Cities Newspaper. She feared how her small-town neighbors would respond to the news. But Simon said the need to end the isolation and inform others of the dangers of the disease ended her silence, (00:12:02) you can only go so long. I feeling isolated and Keeping a Secret inside tweet two and a half years was long enough for us and there were decisions such as our daughter was old enough to enter preschool and wanted her to have that opportunity to do that while she was healthy. So we thought well the only way we can do that as Inform our community and get the story out and that's really what prompted us to do it and we did it and we're glad we (00:12:39) did the reaction of her vesely neighbors. Simon Says has been supported they've been fundraisers to help the family. Now. She's acting have been a Diocesan support group for women with HIV and AIDS. She speaks widely around the Twin Cities to Gatherings of church people and Simon says she draws strength from her faith. (00:13:04) Simon's physical (00:13:05) strength is not what it was. She's a small wiry woman and on this night at st. Alberts Catholic Church. She's pale and weak from fighting a bad cold a drain on her already sapped immune system. Simon stays at home most days with her children, her husband has cut his work to halftime money is tight, but the family still has its health insurance Simon acknowledges that she'll probably die young but says she doesn't dread AIDS anymore. (00:13:32) I think I'm past that point. You know, I think in the beginning I did but it's just life is too precious what we have right now. We have to enjoy it every minute of it and I don't want to spend the rest of my life being angry and frustrated and thinking well what kind of future am I going to have? You know, I'm Is my feelings (00:14:01) the impression is that talking publicly about HIV and AIDS helps Simon? Many women have not acknowledged their disease as publicly as Nancy Simon Lisa for example worries about the stigma and isolation and so is told only a few people about her HIV nevertheless Lisa has arrived at an honest appraisal of her situation. She is chosen who will care for her two children when she dies Lisa 26 and her kids live in the Twin Cities with her mother Marilyn who was also HIV positive. They don't reveal how they contracted HIV but Lisa says fortunately the kids do not have the virus. (00:14:47) We had them checked out from the doctors at and downstairs here and they have never came out positive. They're always negative which I pray to God when when they take their blood tests and stuff like that because I don't want it to happen to my kids neither. Is there two beautiful kids (00:15:07) Lisa's mother Marilyn is in her 50s heavy with gray hair sitting very still with her eyelids half-drawn Maryland has an aura of Reserve but she's direct about her fears for Lisa and the (00:15:20) grandchildren sometimes when she goes out and parties and she doesn't come home by three or four o'clock in the morning. I usually stay up with stay awake all that time and I think about God is this what it going to be like if she goes before me and it did hurts. It hurts a whole bunch because I almost wished I could be me instead of her. I want her life to go on because of my grandchildren and it hurts the whole lot. I just never figured she. She would be this way. Our life is too too too young. She's too young. She got a whole life ahead of her with her kids. Give me I don't know why I raised my family. If there was a way that I could take her aides from her. I probably would. (00:16:17) Marilyn and Lisa have been to a local women's prison and the Leech Lake Chippewa reservation to speak about their HIV experience and they say this helps them cope. But more important is being honest with the children about what's happening. Marilyn says that honesty is paying off (00:16:32) they look after her and I also which is good. They understand this thing about HIV because yesterday when I cut my toe I made myself bleed right away Desiree when running upstairs and she got to drag me some toilet paper and she went running in the basement got to bleach and I know what this is for this is cause you're a diabetic and you were HIV you got to be careful so she knows she's eight years old, but she knows and so does Roberts and that's the thing that I like best because I can talk to them and prepare them for the years (00:17:05) ahead. Even though it's hard. Lisa says it's better for the kids to know everything. She says they can sense the problems. Anyway, (00:17:12) because sometimes when you're really depressed you're down and the kids come Q. Oh, what's the matter? Grandma? What's the matter mom, and they know something's wrong or nothing's wrong. Nothing's wrong. Just go play. They don't listen they all said right there and tell you tell him and when we tell them they they sit there and they hold us because there's a that's our our biggest thing of what how do you say that our support is right there with the two kids because when were depressed and we're Sad and Blue and don't even feel like moving that day and you cry and you hurt and Desiree. Robert will come up to me or my mother and turn around. And say oh don't worry Grandma. Everything will be all right. I love you. And I think that's what the kids need to know is if anything is going to happen to us. They should know that it's going to (00:18:06) happen Maryland supports the strategy. (00:18:09) I wanted to be a normal part of our life where my grandchildren grow up to. Understand and to respect what happens. I know there's that times. I didn't probably going to be some sadness in their lives and mine but my best bet would be to be open and honest with everybody even if you'd you kids are small they're still people they still understand. God gave my brain to understand to adjust in to go on Lisa says she (00:18:43) and her mom rely on Robert and Desiree paradoxically, it's from that Reliance that Lisa is able to intern help the kids (00:18:50) cope and my son will look at me and he'll say Mom. I don't want you to die. I said well son, I'm a stubborn old d word and I'll be damned if I'm going to go down that soon son. So you better look forward to the stubborn old hag to live long time because you ain't getting rid of me that quick, you know, and I have to say something like that to perk him up too because I don't like to see my son hurt. So I just hold onto him and get all my hugs and kisses from him there. And my daughter to a she is something very special because to me she's just a little angel on her little lips touch you and I give you them cute little kisses. It's enough to make anybody happy. It would be a mistake to (00:19:38) draw from Maryland and Lisas story that they are content with their situation and their better moments. They are accepting of and resigned to their fate but no matter how well they have done Marilyn Lisa and other women with HIV and AIDS still have to cope pretty much on their own the services that exist for people with AIDS are geared primarily toward gay men. There are a few peer support groups for women, but none and outstate Minnesota Marilyn and Lisa also struggle financially because their only income is from Aid to families with dependent children or afdc and they live in public housing. Where will they go when they are too sick to care for themselves. According to the Health Department's Fraser Nelson. There are no foster homes. Instant Minnesota to care for women and their children in the late stages of (00:20:24) AIDS and that to me is a tragedy to think that in order to get care. You would have to basically leave your children at the time when you need the most is just an offense to women (00:20:36) Nelson says most Minnesota women with HIV are in poverty when they are diagnosed or else soon find themselves there (00:20:42) and you have a certain amount of money for gas or for bus fare and your son or daughter needs a medical appointment. You're going to take that kid to the medical appointment and not make your own sometimes kids and families are treated at different sites. So you need to pay for the child care and find someone to care for your child. If you yourself are going to go to the doctors. So childcare is an enormous problem Transportation putting a very sick child with a very sick mom on a bus in a Minnesota winner is not acceptable to us poverty is a common (00:21:14) theme in the lives of many women with HIV but in Minnesota those women who have HIV AIDS Come from all walks of life from every economic class and from every racial and ethnic group even so it is not widely accepted that anyone can get AIDS or HIV. In fact Grace Arrington finds that denial is widespread Arrington runs the Minneapolis Urban League's AIDS program, which serves Minnesota's black community Arrington cites the example of middle-class black women like Angela from whom we heard earlier. She says they ignore the disease until confronted directly with it. One reason is that there aren't very many black professional women who are infected (00:21:54) yet. But I am presuming that in the very very near future. We will see more of them coming down the pipe and if in the African-American Community, it's like people that have quote-unquote made it who are professional and successful. They think that this is not their diseases for like IV drug users and in the gay people and things of that nature, So, you know, it's just so inappropriate to talk about that, you know, but Arrington doesn't (00:22:26) restrict her indictment only to African Americans despite all the media attention AIDS gets Arrington says Society at large still ignores the issue while isolating and stigmatizing the infected Arrington says she encounters those attitudes even among people. She expects would know better. I (00:22:43) can remember one time. I was at a party and this was a sorority sister and from this I friendship kind of got broken up we were talking about at the table at her party were talking about sexual abuse and it was okay to talk about victims being abused. But when I start talking about AIDS, that was very inappropriate to talk about AIDS and I was like, how can you talk about you could be a sexual abuse counselor and you not want to confront AIDS. That's weird. Don't you think I was like this disease encompasses so many issues that people is going to have to confront it. It's going to have to be talked about, you know upfront and people just gonna have to get their blinders off and come on with it and let's be real because this is the issue that crosses every will cross. Everybody's lie. (00:23:45) AIDS is not the biggest Health threat facing women heart disease cancer even death from auto accidents claim a much greater number of female lives. But the reason the term epidemic is used to describe. The spread of AIDS is that the disease is not under control. There's no cure and it's affecting an Ever Wider Circle of people a growing number of whom do not fit the profile of intravenous drug user or homosexual the women who carry HIV not only face the Grim prognosis of the disease. They also must Make their way in a society which does not for the most part acknowledge or even care about their situation. Only one of the five women interviewed for this report Nancy Simon agreed to allow the use of her full name. She says she draws strength from her religious faith and from being able to speak publicly about carrying the HIV virus. The other women are at different stages of publicly acknowledging their condition, but there is no escaping their stories more women in Minnesota will become infected with HIV. They will inevitably cope with the same problems as Marilyn and her daughter Lisa or Mary Ann or Angela all of whom face poverty isolation and stigma and as the rate of infection spreads the women with HIV and AIDS will still crave acceptance like Angela, they will struggle with whether they can win that acceptance by coming out about their condition. That is Angela knows that takes a lot of Courage. When what you've seen and heard Bird is shame judgment and rejection. (00:25:29) At first I was really afraid of my voice being on the radio and somebody said, oh, I know that voice. I know that voice and trying to put the voice with a face and I hope somebody knows my voice and wants to put my voice with my face and come to me and give me a hug and say I accept you for who you are, you know, and I love you for who you are. You're a good person, you know, and that's what I want. But I like I said, it'll be easier for me. If someone comes to me and accept me, you know, then going around gossiping, you know, and I really that's what I want. AIDS lives here was written and produced by Joe Kelly at Minnesota Public Radio Station W scn in Duluth. It was edited by Dan Olsen with technical assistance from Janet Carter. AIDS lives here was written and produced by Joe Kelly at Minnesota Public Radio Station W scn in Duluth. It was edited by Dan Olsen with technical assistance from Janet Carter.