- education plan
- asking what they know
- addressing misconceptions
Thesis: AIDS education is not just “sex ed” or “abstinence only.” There must be discussions that eliminate misconceptions.
- HIV-related stigma and discrimination are now recognized as key barriers both to the delivery of quality services by health providers and to their utilization by community members and health providers themselves.
- limited recognition of the important link between HIV-related stigma and public health outcomes
- insufficient capacity among health care managers regarding how to effectively address stigma and discrimination through programmes and policies. Third, there is a persistent misconception that stigma is too pervasive a social problem to effectively change
Thesis: AIDS education in the health care setting specifically focuses on eliminating stigma that prevents patients from getting the proper treatment.
- Education is so strongly predictive of better knowledge, safer behaviour and reduced infection rates that it has been described as the “social vaccine”, and UN and World Bank experts say it may be ‘the single most effective preventive weapon against HIV/AIDS’.
- “Education Vaccine”
Fear and denial, action inaction, decision making
- “She said, ‘I can’t tell anyone. I can’t tell my son because I’m afraid he won’t let me see my grandchildren. I can’t tell people at work because I’m afraid I’ll lose my job and I’m close to getting my pension.’ ”
- HIV advocates and physicians say they still encounter people with the disease who don’t seek treatment, increasing their risk of death and spread of the disease. By the time they go to hospital, they have deeply compromised immune systems, and sometimes full-blown AIDS.
Thesis: Patients deny themselves the help they need because they are ashamed of the disease.
- self stigma
- “Self-stigma reduces your expectations,” says France. “It makes you reduce your life to just living.”
- Two of our interviewees were recently diagnosed, and one had been living with HIV for 27 years: yet there was no difference in their perceptions. You’d think self-stigma would ebb as time went on, but it’s impervious to new experience or knowledge if it’s something that’s founded in a pre-existing set of negative beliefs about yourself.”
Thesis: Self-Stigma caused by fear of rejection and “anticipated stigma” is preventing patients for getting the care they need.
- I was homeless, not because I had to be; because I chose to be. Because I always had a place to go at my mother’s
- I came to Dr. Rebick. I was going to a doctor in the Bronx and for some reason, he was a great doctor and he used to do a lot of studies and whatnot. All of a sudden he left.
- I said – let me find a doctor closer to me, because I moved to Brooklyn but still going to my doctor in the Bronx. I said – let me come here. And I had a thing about coming to Downstate, I really did. One of the reasons is because my daughter is here. I went through a little change with Downstate when they transferred my daughter without my permission.
- I stayed at Rikers Island for 30 days
- Yeah, so I had to start over, but I was incarcerated a total of eight months. I stayed at Beacon for eight months and I went on work release one month. I basically finished and I moved back to Long Island
- STAR Clinic
- When I moved back from Long Island to Brooklyn, when I got my apartment in Brooklyn I had set two short goals – first to get my skates, and get a sewing machine.
- In Long Island for three years.
- Crown Heights
- elementary school in Brooklyn
- high school in Brooklyn, Abraham Lincoln
- Medgar Evers
- PS 155 on St. Marks and Saratoga
- Eastern Parkway and Schenectady
- Crown Heights on Crown Street
- Abraham Lincoln in Coney Island
- Rikers Island
- Beacon Correctional Facility
- Long Island
- North Carolina
- New York
- Long Island, go to Jersey, go to Baltimore, Yonkers
- out the country
- came back to the city
- my house
- back to the city
- North Carolina
- Um, I don’t feel, well I guess I’ve been taking them since ’97, when I was diagnosed, I really don’t feel a difference.
- We talk every day. (mother)
- At one time I had stopped taking my medicine. I never like took my medication and then I forget here and I take it there, I never. Either I took it or I didn’t. But I take my medicine now.
- Okay, I was incarcerated and I went upstate. I stayed at Rikers Island for 30 days exactly, and I went straight upstate. I stayed upstate from January of ’97 to August ’97. Nine months. Nine Months, yeah. Eight months. I would have been there less than that but I went to work release, but then I had to fight with this (inaudible)…
- Yeah, so I had to start over, but I was incarcerated a total of eight months.
- Two years at STAR
- In Long Island for three years.
- most of my life
- in the ‘80s
- three days, 7 at the most
- I was 37 years old
- in ’96
- next month
- when I started my medicine
- three years straight
- So somewhere between ’93 and ’97
- I’m 61
- My daughter passed away in ’75
- four or five years after she passed
- in ’75
- 82 years old
- when I was homeless
- in ’99
- In years later
- when I stopped working
- When I was incarcerated
- his early’20’s, 28
- two and a half months
- I was homeless
- So I was the mediator. I was the one that kept the peace, I was the one came to the rescue.
- My mother called me Miss Fixit.
- I was never ever a person about material things
- I know that I’m blessed
- I grew up in a household of four sisters
- I had the pleasure of having two fathers
- I had sewing from junior high school and high school, I used to teach basics to the class. It was something I enjoyed.
- I had long dreads in my hair
- I was like devastated
- I called was my mother, my mother’s the first one I called for everything.
- Because we were close, even though she was strict
- Felt like somebody took the floor from under me
- I mean we were close growing up but now that they live there and…other than that, and here recently I just started disclosing it to some people that I know and one person I disclosed it to, and you tell her
- When I was able to talk about it I didn’t have no problem. For those who I did tell I didn’t have a problem with it. The period had passed where I just couldn’t get the words out, you know all of that passed.
- Hmm, not why me? I didn’t say why me, I said – well, I took it upon myself. I can’t blame so-and-so, I can’t blame so-and-so. If I had protected myself instead hanging out… for a while, I still don’t know the history; they don’t know the history. So I couldn’t blame nobody and I just took my own responsibility.
- I would foresee things. I would always tell my mother…my first child is going to be a girl. She was born on Christmas Day and we gotta be married or she would pass. And so many things from the age of five and seven until this day that I foreseen exactly and I know it’s a blessing but it’s real, real, real scary (crying).
- it’s real scary
- I’m more selfish to myself than anybody else. I have to learn how to balance what I do in life
- I found out I was HIV positive too. So now I know what it feels like. But you don’t know what it feels like to have somebody do what you did to me.
- It wasn’t a good feeling at all.
- I’ve been doing pretty good. I’m still on the same regimen, yes. I really look at it as a blessing in a sense because if I hadn’t found out I was positive I wouldn’t be looking on the brighter side and doing better things for myself. I might not have seeked housing, I might still been out there. I look at it as a blessing.
- Now I can talk to people, not that I go around telling people I’m positive but I can talk about it without getting watery eyes or needing to go to the bathroom you know, going to blow my nose and wiping my eyes.
- I felt she deserved it and I still do. That became an annoying thing because I was at home more than when I was working.
- I knew something was wrong so I called my mother and told her to look through news articles and whatnot.
- They wanted to tell me that he got hit by a train. That’s one of my fears.
- Because I always had a place to go at my mother’s
- Oh, well the drugs, I needed money to buy more drugs. I can’t really say that…because I could have got, just by being homeless, you need money
- My mother was my correction officer in the beginning, I mean parole officer.
- Family, great support, my sisters…three of them are RNs and two are RN/nurse practitioners. One of my sons, he’s in the health field.
- And I appreciate those little kiddie things, those little stories she would tell us, make us paper dolls, show us how to color and draw and make arts and crafts and stuff. I appreciate those things but even my older sister, she was kind of boy crazy. I didn’t think about that – I used to like to fight the boys. So I could say that’s one of the things that kept me grounded.
- I’m like – what the heck is going on? I said – let me find a doctor closer to me, because I moved to Brooklyn but still going to my doctor in the Bronx. I said – let me come here. And I had a thing about coming to Downstate, I really did. One of the reasons is because my daughter is here. I went through a little change with Downstate when they transferred my daughter without my permission.
- Over the years all the things that I’ve so-called lost…nothing’s ever lost. Whatever I accumulated and lost, and I didn’t have later on, it came back triple. I just have to look at it like that. Starting over fresh. Downsizing…
- STAR Clinic
- my mother was real strict. Like I said, wherever we went, she went.
- I wouldn’t say stepfather because he was our father, he gave us the best of everything.
- My mother, she made things fun for us.
- I had some medical papers and one of them disclosed that I was HIV positive. And this girl, she’s a big girl, she used to like to bully everybody. It was about her. And she saw those papers and she showed everybody.
- Even with my mom…my mother she’s just – this is my house and I pay the bills and everything is her way. Even though she accepted the fact that I was positive
Marie What are you most proud of?
Roslyn To have the mother that I have. My mother raised five daughters, no boys, and my mother’s like when they grow up, get them out of my homeowners use, I’m going to travel this, I’m going to do this, I’m not watching no babies, I’m not that…yeah, right. Even before my youngest sisters got out of the house she had started a daycare. She used to watch abused kids, she used to help out parents that didn’t have control of their kids. She did that on her own and then she started doing it, got a certificate. My cousins, all of them, the best Aunt is Aunt [S], my mother’s…she’s great. And she looks good. She’s 80 years old, September she’ll be 80, she’s going to Africa, that’s her…
“Well, every time we went out my mother was there (laughter) so my mother was real strict. Like I said, wherever we went, she went.”
“My mother, she made things fun for us. She had arts and crafts, made ice cream with the snow, she would tell spooky stories with the lights out. She just made everything fun. For the holidays she’d decorate, Halloween, Christmas, whatever.”
“And first one I called was my mother, my mother’s the first one I called for everything.”
“Even with my mom…my mother she’s just – this is my house and I pay the bills and everything is her way.”
“I grew up in a household of four sisters, one nine months older, the one under me was nine years younger, so that was a big gap. So for a long time it was just me and my older sister.”
“I had the pleasure of having two fathers, I wouldn’t say stepfather because he was our father, he gave us the best of everything. Household full of girls. I was the one that made everybody laugh; I was the one when my mother and father separated I had to be with my sisters otherwise they wouldn’t go. I was the one that kept the peace. I was the one even though I started doing drugs they looked up to me a lot.”
“I called was my mother, my mother’s the first one I called for everything.”
“Because we were close, even though she was strict, she said – you can always come and talk to me and all my cousins, they could go talk to her. She’s the first one I told, I boo-hoo’d, she said – don’t worry about it, its going to be all right. And that was that.”
“My mother, my sisters, my sons, I haven’t actually disclosed to my outside family like cousins. I mean we were close growing up but now that they live there and…other than that, and here recently I just started disclosing it to some people that I know and one person I disclosed it to, and you tell her”
“Because they’re young, they’re boys, I’m not a grandmother yet”
“My daughter passed away in ’75, she had a rare heart condition and I never did drugs. I started doing drugs late in life.”
Marie (laughter) What are your support systems like, family, friends…?
Roslyn Family, great support, my sisters…three of them are RNs and two are RN/nurse practitioners. One of my sons, he’s in the health field.
Susan Say that again about the nurse practitioners. Who are they, I’m sorry?
Roslyn My sisters. I don’t have any problems there. I can talk to them. And they always call me, I’m their favorite sister. Like I said when my mother and father separated, in order for my sisters to go with my dad I had to be there. So I was the mediator. I was the one that kept the peace, I was the one came to the rescue. Don’t mess with my sisters! I love my sisters. Now there’s one, she’s, I don’t know, even when she had her menstrual period, she would just be a whole Jekyll and Hyde, and now she’s going through this thing with her daughter but I always call her and keep in contact with her even though she doesn’t return calls. She’s just wishy-washy. One day she’ll call like nothing happened and then the next day she’ll call like it’s the end of the world. “All you all did this!” I know her and when she goes through her changes I be so sweet she can’t take it! And she just found out her daughter has MS and she’s going through…
Roslyn She’s nine years younger; my sister over me is nine months. Nine, 11, and 13 years younger. So it’s like a whole generation, and everything, those nine years make a big difference. I mean, my mother, she’s still strict but she gave in a little you know? It was just…my mother made things fun, she was a workaholic, when she wasn’t working she was with her kids, and like I said it was just me and my older sister then so I said – that’s really what made a difference. And I appreciate those little kiddie things, those little stories she would tell us, make us paper dolls, show us how to color and draw and make arts and crafts and stuff. I appreciate those things but even my older sister, she was kind of boy crazy. I didn’t think about that – I used to like to fight the boys. So I could say that’s one of the things that kept me grounded.
Hobbies (other interests and important aspects of her life)
“Sewing. Crafts. Yes. Sewing and skating. I still go roller skating.”
“I’ve made money traveling out the country, back when they had roller disco.”
“I would love to learn how to skate.”
“Sewing and skating, it was two of my addictions that paid off.”
“Sewing, roller skating, and singing. S, S, S (laughter).”
“That’s not – I like fixing things, whether it be electrical…that’s how my mother and my second father were. They got closer, they got together, I used to always watch mom, they used to be outside and I’d actually watch them fix things. Fix the things in the apartment, you know?”
Marie Right. What are some of your goals?
Roslyn I like teaching kids crafts. I always think about how my mother, she made it fun for us and then she made it fun for my sons, they also had an arts and crafts thing. My son started, he used to make a little money for school, made Rugrats with little rocks. And he would draw…
“So I like doing things, and I like taking the little kids in my building, I don’t take money, I just make sure we have enough for the day, and we go to Prospect Park and go skating, I like doing that. Because my mother made it fun, she rode bikes with them until she was like 75 years old. She did it with me, she did it with my sons…I like doing those things. “
Susan I have questions…you mentioned an incredible range of jobs that you held over the years. You had a business where you did sewing, you worked as a concrete –
Roslyn Cement finisher.
Susan Cement finisher on bridges, so that’s two completely different positions. And then you worked as an LPN. And a replicator – what’s that?
Roslyn Data entry in the computer, takes the liquids and the plastics, the metal and the plastic and makes CDs.
I did volunteer work there. I used to go Central Islip itself, East Islip, used to go and do the property violations, abandoned houses, basically…
“Matter of fact, well I’d been incarcerated like go to Rikers Island, I’d go for like three days, 7 at the most. And I was 37 years old and the judge gave me a one to three. She said – I’m not going to give you city…I don’t understand you wait so long to get a record, I’m going to teach you a tough lesson. So she sent me upstate. I was in Beacon Correctional Facility. This was in ’96.”
Marie Tell me about your experience with incarceration.
Roslyn Okay, I was incarcerated and I went upstate. I stayed at Rikers Island for 30 days exactly, and I went straight upstate. I stayed upstate from January of ’97 to August ’97. Nine months. Nine Months, yeah. Eight months. I would have been there less than that but I went to work release, but then I had to fight with this (inaudible)…
Marie All bets was off?
Roslyn Yeah, so I had to start over, but I was incarcerated a total of eight months. I stayed at Beacon for eight months and I went on work release one month. I basically finished and I moved back to Long Island. And, um, I started back working. My mother was my correction officer in the beginning, I mean parole officer.
Marie What do you see as a connection between incarceration and HIV?
Roslyn Didn’t we just do that?
Marie No. Tell me your experience with incarceration.
Roslyn Um, it was a blessing. More than likely if I didn’t get incarcerated I wouldn’t have gotten (inaudible) and I wouldn’t have found out I was HIV positive.
Vito Russo’s speech, Why We Fight, calls out bigots and ignorant people who he believed were preventing the AIDS crisis from ending. Could Zika be the Next HIV?, by Laurie Garret, examined the virus Zika, which has been spreading rapidly. The disease is currently infecting people via mosquito bites, but recent cases show that it could also be sexually transmitted. Thus, Garret drew connections between Zika and HIV. Sonja Mackenzie explains in her book’s introduction the different topics she will discuss that relate to AIDS, specifically in the black community. The book will be compiled of sexual stories from black men and women and how AIDS affects their lives. HIV lacked adequate attention and concern and many people did not fully understand what was happening. If Zika receives similar treatment the affects could be disastrous.
In his speech, Russo claimed that the biggest reason AIDS was not being cured was because the majority of the population was not being affected so they did not care. He said, “It’s not happening to us in the United States, it’s happening to them — to the disposable populations of fags and junkies who deserve what they get. The media tells them that they don’t have to care, because the people who really matter are not in danger. Twice, three times, four times — The New York Times has published editorials saying, don’t panic yet, over AIDS — it still hasn’t entered the general population, and until it does, we don’t have to give a shit.” There was a lot of confusion and misunderstanding surrounding AIDS, mostly due to insufficient research and media attention. Fear and the need to make sense of the situation resulted in racism and even conspiracy theories. Mackenzie interviewed a woman named Patricia who lost her husband to AIDS. Patricia brought to light one of the conspiracy theories that believed AIDS was man made and was initially injected into certain people who needed weeding out. The text states, “The motive behind HIV: to weed out the “dregs of society.” Patricia continues, “It’s economic racism, it’s social racism. Specific people [are] being discriminated against for one reason or another.”
The Zika virus, in comparison to AIDS, is still in its early stages but it is spreading rapidly. There is still a lot of research that needs to be done regarding Zika and many people are unaware of the ways it can be spread and just how many cases have been reported in the United States. Due to the lack of awareness and disputes over funding, Zika could be heading down the same path of AIDS, which is a dangerous path. In this clip the documentary, How to Survive a Plague, which primarily focuses on the AIDS activist group Act up. The protest in the clip reveals much about what it was like in the early 90s. Garret claims in her article, “Like HIV, the Zika virus would likely find its way into populations that feel discriminated against by the general population, and take its toll disproportionately among teenage girls and young women.” There is a lot of evidence supporting why Zika could be the next AIDS but there is still time to prevent history from repeating itself. Making more people aware of what is happening and ensuring funding will be provided to those who need it will help prevent another crisis like AIDS.