Lilly Stein / Secondary Research

THEMES: HIV & Education / Disease as Salvation/Redemption


HIV & EDUCATION

01. Education and HIV/AIDS: A Window of Hope, The World Bank

Priority should be placed on educating children and youth, particularly in a world affected by HIV/AIDS. Basic education is one of the most effective (and cost-effective) means of prevention.

02. Education plays a crucial role in fight against HIV and AIDS, World Education Blog

Education is crucial in efforts to prevent and informatively care for HIV/AIDS, especially during youth. Education, particularly focused on young women, can save lives and allow for more informed decisions through various stages of life.

03. Graphic Intervention: Poster Series, Massachusetts’s College of Art & Design

In order for education to be an effective means of reaching a variety of people on personal levels, it must  draw upon, and cater to, messages rooted in the popular culture of diverse groups and highlight a variety of lifestyles and people.

SYNTHESIS: Education plays a crucial role in the fight against HIV/AIDS. The epidemic has the potential to impact education, and in contrast, education has the potential to positively affect AIDS/HIV and how it is prevented and cared for. Arming people with knowledge will aid the prevention and improve life quality.


DISEASE AS SALVATION/REDEMPTION

01. Being Diagnosed with HIV as a Trigger for Spiritual Transformation, Religions 2011

Within those diagnosed, HIV may act as a “trigger” for positive spiritual transformations. Across all participants, a ST developed in four stages: antecedents (risky behavior), diagnosis, adaption, spiritual transformation. Most described their life style prior to diagnosis as risky and empty, in contrast, following diagnosis and PT, people described a re-examination of beliefs, views, and lifestyle.

02. Perspective Transformation Over Time, University of Georgia

Transformational learning, which involves a fundamental change in the way we see ourselves and the world, can occur in adulthood. Specifically, this transformation can be “triggered” by the diagnosis of HIV or in the face of a potentially life-threatening illness. This transformation/new perspective proved irreversible. Additionally, this perspective change includes changes in meaning schemes, which include the adoption of a future-oriented perspective, a greater care for ones-self, and integration of diagnosis into self definition.

SYNTHESIS: The diagnosis of HIV or of a potentially life-threatening illness can bring about a spiritual transformation or positive perspective change allowing a re-examination of beliefs, views, priorities, and lifestyle.

Textual Analysis / Marie / Lilly Stein

Throughout Marie’s moving account of her journey with AIDS, I noticed a few themes that were intertwined throughout her story.


1. Determination / Perseverance (Rooted in Fear)

Throughout her recount, Marie frequently looks back on her experiences with fear. This fear begins with her initial diagnosis, and appears thereafter in a variety of forms and emerges from a number of deep/emotional places. It is evident that this disease not only affects her physically, but fully encompasses her emotionally. While Marie’s fears stay with her, they drive her to live her life and motivate her to seek health and happiness.

a. Marie fears her diagnosis. Upon first look, she is scared for her life. She mentions her feelings during the moment she was diagnosed, “Like the world was going to end, that’s exactly what it felt like.”Maria mentions that, at first, she was in denial. She felt she had lost control of her life and for a time, was suicidal. “Like I said, I tried to kill myself…I got HIV, I know I’m going to die soon. It didn’t turn out like that. But I can also change the course of how I die.  I don’t want to be sunk in, the big thing on the cheeks; I’ve seen the ugly face of HIV, I don’t want that ugly face. So yeah, I go to bed early, I go to sleep, and I don’t do crack.” Maria had a realization, after facing many additional health issues, that she did not want to die. This fear would drive her search for happiness and determination to live a healthy life. This strength marks  a very important turning point in her journey. “The only thing I could say is when I decided that I wanted to live I did everything I had to do.”

b. Marie is scared of social judgments. She is scared of looking like she has AIDS. “The only fear that I have is looking like I have HIV.  Some people you can look at them and can tell – if you don’t have the proper rest, you’re not eating right.”  This particular fear eventually drives her to be proactive: “Because I’m living proof that you can live with it for a long period of time.  You don’t have to die of AIDS; take your medicine, go to your doctor’s appointments, do what you have to do to make sure your numbers are right, and you don’t have to worry about nothing.” This fear of judgment emerges not only in regards to physical  appearance, but also in disclosing her diagnosis. Because of this fear, Marie thoughtfully and carefully discloses this information to her loved ones in order to lift “A weight off my shoulder.” She mentions her family embraced her, but her children are currently not in contact.


2. Hope/Faith in God & Others

Throughout her interview, it is evident that Marie has developed a positive outlook on life, and has faith that God will guide her through her journey. It was interesting to get a sense that she also has faith in the people in her life. Even when people may not follow through, she does not speak of these people negatively. The way she speaks brings to mind an “everything happens for a reason” attitude.

a. Marie has hope in her future. Despite all that Marie has endured, she looks to a bright future. Through reading her story, I found that hope is a commonly appearing theme. During the time of her initial diagnosis, Marie still struggled with finding a will to live. Through her journey, and through the interview, her change in outlook is evident. “The difference is when I first found out I was in denial.  I wouldn’t take no medication.  They only had AZT back then; I declined it because people was dying.  Now I’m on a regimen that is working, I’m undetectable, I want to live now.  I was self-destructive when I first found out.  Now I just want to live another 33 years (laughter).” Marie has overcome so much: beating cancer, thriving after a triple bypass heart surgery, a coma, and a trach.  She focuses on that. Through the way she speaks, she does not harp on the negative aspects of her diagnosis and journey thus far. She acknowledges that the difficult aspects of her life exist, but she has goals and wants to move forward to her “bright and beautiful” future. “…I’m most proud that I’m a strong woman and I can bounce back from most anything.”

b. Marie has faith in others and in God. Marie frequently mentions faith and her own “free spirit”, specifically when asked about her spirituality. It is evident that she has put much thought into her spirituality. While this could go hand in hand with her hopeful attitude, I think her faith, in others and in God, presents an additional, positive aspect of her journey. “I have faith that there will be a cure, I have faith that I’m going to be living here a long time. I have faith in God.  My spirituality is very high on my list because if I don’t have that spirit…my fiancée tells me I’m a very free spirit.” In regards to others, Marie tells the story of how she became homeless, how her kindness to let a man stay in her home caused her to destroy everything. “And it’s not all bad being a free spirit, you just gotta be careful who you’re being that free spirit with.  My free spirit got me homeless you know what I’m saying, I have absolutely nothing.”  Additionally, when discussing her children, who, have not been in contact with her, she mentions her faith that they will come back to her, that God will bring them back to her. “And we’ll come together real soon.  I leave it in His hands; He always bring them back to me.” Her faith in God is frequently mentioned (even in the midst of hardship—when discussing homelessness) especially in regards to her health, her life, and what is to come. “I have life; I thank God every day for that.  But I’m going to get everything back tenfold; God going to see to that.” She also mentions God as part of her “the moment” of change (for the better) when she discusses her release from the hospital after heart surgery, “…I was just looking up at God.  You want my attention – you got it (laughter)!”

2. Redemption / HIV as a “Savior” 

Overall, in looking at Marie’s time-line of her journey, I think it can be inferred that though AIDS has thrown her life into a difficult whirlwind, it turned aspects of her life around—and in a way—she found redemption. In her reflections of her life, going from a “dysfunctional” but “fun” childhood, to a tough mid-life (drug/diagnosis), and finally, it seems, to a positive outlook with methods of surviving and thriving. 

a. After diagnosis, Marie finds redemption through change or ways. Marie makes many recounts during her interview insinuating that she was reckless. One of which discussing her illicit drug habits, “At 16, I experimented with marijuana.  At 18, I started shooting up drugs.  Nope, 17 I started sniffing, 18 I started shooting up drugs up until I was 21.  That’s when I got pregnant and I stopped.” During this phase in her life, Marie was also incarcerated. It was during her incarceration that she lost “everything, my children, my home.” This is also the point in her life where she was diagnosed with AIDS. She blames her reckless behavior for her contraction with the disease: “If I wasn’t shooting up, behind somebody, being careless, I wouldn’t have HIV.  If I wasn’t prostituting to get drugs I wouldn’t have HIV.” While her journey takes a downward turn here and during the time immediately following her diagnosis, she eventually finds redemption through the disease. Looking back, when asked how her life would be altered had she not been diagnosed, she states “I’d probably be reckless, I probably would be.  I probably wouldn’t take care of myself the way I’m taking care of myself.  Because I would think I’m immortal; it has changed my life, you gotta change your life when you got HIV.  You can’t live reckless and eat a candy bar and make that a meal or have a Little Debbie snack and make that…you gotta have a meal, sit down and have a meal so the medication can work.” It is through words like this that I think Marie felt personal redemption in changing her ways for the better. Though this change was necessary for survival, she made a change that allowed her to be free from her past and move towards her future.


Location References

  • “I grew up in Queens Bridge project.  I migrated from Brooklyn to Queens”
  • “Life now in Brooklyn as a HIV positive woman.”
  • “When I was in Chicago, I didn’t tell them.  People that’s not close to me, they won’t know.  I won’t just throw it out.” (In reference to who she has not told).
  • “No; somebody poisoned me in Chicago” (Discussing coma/health issues, recuperation in Chicago, back to Brooklyn).
  • “That’s when I was incarcerated” (Diagnosis during this time.)
  • “When I was at a halfway house it was disclosed” (Experienced stigma, diagnosis was disclosed unwittingly.)
  • “Coming from Long Island to here, that’s a chance I have to take, come from Long Island there to get my medicine.” (Access to care/medicine.)
  • “It’s the homelessness I’ve had the problem with.  I’m grateful that I’m in a spot where they treat me good, they really treat me good… I’m 55 and I’m homeless.  That’s the worst.  You gotta live by somebody else’s rules.” (Experiences with poverty.)
  • “Oh, I was being nice, letting somebody stay in my home while I had did a crime in Chicago” (How became homeless.)
  • “And the place you’re staying in now on Long Island is – Is my fiancée’s family.” (Current living situation.)
  • “I’m going to do something about them because I’m leaving.  I’m leaving.  I’m coming back to New York City.  I’m coming back. I’m immobile there” (Future plans to get out of Fiancé family house).
  • “They’re here in Brooklyn.” “Two are. One is in Philadelphia, one is in Georgia; they was adopted.“ (Her family/kids.)
  • “My goal is to get another home and build from there and make it my home for life.  I don’t want to be moved around.” (Future goals.)
  • “STAR Clinic was my clinic” (Feels most cared for at this clinic, came from Chicago even.)

Time-based Information

  • “It was just me and my brother, a little dysfunctional because my mother was an alcoholic.  I was home, it was what I was used to. Um, it was fun.  It was very strict.  My father was a very gentle giant.  I got most of the beatings because I was the one that was mischief.  I dropped out of school in the 11th grade.  I had good grades in school, I had good grades in school, when I went (laughter).” (When asked about childhood.)
  • “I went to school, oh, I went to PS111 and then I went to junior high school 204 in Queens.  And then I had a year of college.” (When Asked about school.)
  • “June of 1983” (Year of diagnosis, at age 22, 30 years now)
  • “At 16, I experimented with marijuana.  At 18, I started shooting up drugs.  Nope, 17 I started sniffing, 18 I started shooting up drugs up until I was 21.  That’s when I got pregnant and I stopped.  Right now I don’t do anything but, I do smoke weed.” (Drug use)
  • “June of 2014” (Became homeless)
  • “I’m getting ready to get married next week… Together since November but we’ve known each other for 35 years.” (Asked about Fiancé.)
  • “21 years ago and it still hurts.” (Moms death.)
  • “June 7, 2010.” (Bypass heart surgery)
  • “I woke up a month later.” (Coma, poisoned by “those who call her mom)
  • “That was the cancer, which was done April of 2011.” (Discovered cancer after heart surgery, immediately.)
  • “No, it was solely on the drugs.  And I wouldn’t have got arrested…I had responsibility of my children, but I was out there too far.” (Discussing her children in foster care—rape, abuse, homelessness.)
  • “That happened three and a half years ago.  Because still I was on a collision course three and a half years ago.” (Her decision, after heart surgery, to move forward with hope.)
  • “Been there eight years now.” (Length of time at Star Clinic.)

Personal Identifiers

  • “It was education and insightful because I like to learn. I like to learn.  I’m very inquisitive and I like to know things.”
  • “And I kinda understand, because who wants to know that their parent have HIV?  And she could die at any moment…so I think they detaching themselves from me so they don’t have to feel the pain later.”
  • “Because I’m living proof that you can live with it for a long period of time.”
  • “Well if I wasn’t shooting up, behind somebody, being careless, I wouldn’t have HIV.  If I wasn’t prostituting to get drugs I wouldn’t have HIV.”
  • “Best thing to a family I’ve had in a long time, they really treat me, they embrace me.  You know that’s a piece of my insanity; they make it sane.  It makes me cope”
  • “I like good company, I like good conversation, I like laughing, sometimes I like crying; it sounds a little strange but sometimes I like to reflect on back where I was and to where I’m at, and yes, it does bring a tear to my eye.”
  • “Having good people in my life I know I can count on, and helping other people to an extent.”
  • “I’m most proud of my kids, I am most proud of my accomplishment as far as my health is concerned, and I’m most proud that I’m a strong woman and I can bounce back from most anything.”
  • “I overcame cancer, I overcame triple bypass heart surgery, I overcame a trach in my throat, I overcame a coma, I just learned how to walk and talk 11 months ago, I have a colostomy bag…”
  • “I don’t want to look sick.”
  • “Dying three times and being afraid when I came back to life. Because I thought I was going to die and not see grandkids, I don’t see them anyway but wanting to see my grandkids” (Response to biggest health issues.)
  • “The only thing I could say is when I decided that I wanted to live I did everything I had to do. “ (Managing HIV)
  • “I have faith that there will be a cure, I have faith that I’m going to be living here a long time. I have faith in God. My spirituality is very high on my list because if I don’t have that spirit…my fiancée tells me I’m a very free spirit.  Yes I want my spirit to always be free, but with a little caution added to it, you understand what I’m saying?  I don’t want to be just free, free Willy, and I can be like that.  I’ll be like come on Roz, come on Sue…that’s just how my spirit is.  But I want to keep that in place but like I said with a little caution.  Because not everybody’s going to be nice, good to you. Um, it means that for me, I’m going to find somebody like yourself that’s a free spirit, you know what I’m saying?  And it’s not all bad being a free spirit, you just gotta be careful who you’re being that free spirit with.  My free spirit got me homeless you know what I’m saying, I have absolutely nothing.  I have life; I thank God every day for that.  But I’m going to get everything back tenfold; God going to see to that.” (Asked about spirituality.)
  • “I’d probably be reckless, I probably would be.  I probably wouldn’t take care of myself the way I’m taking care of myself.  Because I would think I’m immortal; it has changed my life, you gotta change your life when you got HIV.” (Life without HIV?)
  • “Like I said, I tried to kill myself, I tried to hang myself, turn the gas on…all because I just didn’t want to live. I got HIV, I know I’m going to die soon. It didn’t turn out like that. But I can also change the course of how I die.  I don’t want to be sunk in, the big thing on the cheeks; I’ve seen the ugly face of HIV, I don’t want that ugly face. So yeah, I go to bed early, I go to sleep, and I don’t do crack.  And I won’t…I’m an addict; I could use my homelessness to use crack.  I can use losing everything I ever owned, the 12 years in my apartment, to use crack.  Because addicts use excuses to get high.  But I not, I’m not doing it.” (Experience of finding the light.)

Environmental Identifiers

  • “I guess what’s why my mother did drink because of all the miscarriages, losing a lot of children.” (Childhood)
  • “Daughter works in the medical field so she really understands.” (Telling to kids.)
  • “So I think they probably wish I was dead, that’s just my feeling” (Her kids feelings on news, not speaking currently.)
  • “My, may she rest in peace, friend told my sister.  I wasn’t ready to disclose that to her.  But she disclosed it and I thought she was going to react kind of different, she didn’t.” (Someone disclosed diagnosis w/o permission.)
  • “I was incarcerated.  I think they was trying to find out who has it in the penal system or not, and that’s how I found out.” (Discussing her diagnosis.)
  • “When I was at a halfway house it was disclosed; the attitudes and the snickers and the stares behind my back, you could just feel it, you know?  Nobody…they would clean the toilet after I used it.  You can’t catch it like that.”
  • “The only fear that I have is looking like I have HIV.  Some people you can look at them and can tell –” (Discussing fears.)
  • “I have good healthcare providers, I have.  They’re very caring.”
  • “When I left I had $359 in credit in rent, and being nice, really people just don’t care.  He was sleeping in his car and I was nice enough to let him stay in my other room in my home.” (Backstory to homelessness.)
  • “Like I said, they are really beautiful people.  They not rich, average people, and that’s what I’m looking for, just ‘be yourself’ kind of people.” (When mentioning her Fiancé’s family, current home.)
  • “you’re one of my advocates too because you guide me, you call me, I feel like you call me when I need you.  For some reason you always call me when I need, and I need to stop that, when I’m going through stuff I need to reach out to people but I clam up.” “It looks like my doctor, you, I’m always going to include you, my fiancée, God…” (When asked who her advocates are—Roselyn.)
  • “But me and him had this secret love for each other but we couldn’t do anything about it because he was in a relationship with her. When she passed we said – we ain’t letting nothing or nobody stop us. And he’s been there, he’s been there. I don’t know how I would have made it without the help of him.” (Her Fiance.)
  • “They were very significant people in my life.  The first person that was close to me was my son who died; he was four months old.  That took me for a loop, I had a nervous breakdown.  When my mother died I had a nervous breakdown.  Me and my father, I love him and everything because he was my father but he wasn’t mommy.  My mother was my best friend, I could talk to her about anything.  And she took all my secrets to the grave with her.  And I’m still looking for someone that I can tell my all to, and my fiancée, he knows everything about me so I don’t have no problem talking to him.  But you know, I’m going to start reaching out to you [Roz], because there’s some things I want to talk about with a woman that he can’t, there’s nothing he can do.” (When asked about the people in her life who have passed.)
  • “Oh, they were great women.  And I’ve, wow.  They were really great women.  And their presence is missed, you know?  They fought a big fight; sometimes you win some, you lose some.” (Other STAR women.)
  • “And we’ll come together real soon.  I leave it in His hands; He always bring them back to me.” (Discussing God and kids.)
  • “I was happy but they came with baggage.  They came with a lot of baggage.  I really wish I could have gotten it together, not for me but for them, because it left emotional scars for them.” (When talking about her kids returning.)

Reading Assignment / HIV / Lilly Stein

The spread of HIV/AIDS virus has created one of the most significant health and development challenges in modern history. While this epidemic influences the physical health of individuals worldwide, its repercussions are felt socially and culturally as well—particularly through racial, sexual, and socioeconomic prejudices.

In a speech written by Vito Russo, for the ACT UP demonstration, he emphasizes that he is not dying from AIDs. Instead, he is dying from the prejudices that have created a division between people with AIDs and those who collectively fight, and people who fear AIDs. Russo declares that the impact of race and sexual orientation is greater than the physical implications that AIDs has had on his health. However, due of the prejudices that exist, his life with AIDs is exponentially more difficult.

Sonja Mackenzie further exemplifies these prejudices through her piece discussing stories based within the Black AIDs Epidemic. Through social narratives and accounts, Mackenzie provides a voice for those without the opportunity to share their stories. Not everyone with AIDs has the same story to tell, and differences in race and social standing provide vastly different experiences. From these accounts, she reframes individual and community risk in order to make sense of the AIDs epidemic.

AIDs is still a threat to society, however, it is not the only threat. Laurie Garret, a Senior Fellow for Global Health at the Council on Foreign Relations, compares the newest health emergency Zika Virus to that of the AIDs impact, both in the 1970s and now. Beginning with their origins, Garret discusses how each disease had been in circulation unnoticed for long periods of time before reaching “epidemic” proportions. In addition, AIDS and Zika both were initially transmitted from animal to human—AIDs from monkeys and Zika from mosquitos. According to Garret, the similarities continue with means of transmission being sexual, as well as the lack of government funding and control. Socially, Garret notes, Zika has the potential to reach the point that AIDs has, meaning it may occur most often in minority groups who are prone to experiencing racial, gender, sexual, and socioeconomic discrimination.

Despite the differences between these articles, each represents different chapters of the same story. HIV/AIDs cannot solely be measured by the physical effects it has on a person, but also the effects the disease has on society. AIDs and corresponding prejudices have created a massive division that effects more than health. I believe it is important to stay educated and be proactive when combating these intolerances. We need to stay up to date on possible future epidemics: Who do they effect? How is it affecting? How are we responding? These questions are important in order to break down the division that injustices create.

While I do believe it is important to overcome our historic downfalls of discrimination, I do not find AIDs comparable to Zika Virus. In her article, Garret leaves out a very important piece: the effects of the disease on the person. The effects of AIDs are much more drastic. If you contract AIDs, the disease and symptoms are lifelong—you are guaranteed to get sick. The disease itself destroys your immune system. Zika’s affects can also be harmful, but solely to a growing fetus within a pregnant mom. The effects on the general population are short lasting flu-like symptoms. While I do not believe the physical effects from AIDs and Zika are comparable, it is still important to take note, and learn from, the social impacts of the epidemics.

Zika is a current priority due in part to the exposure of the 2016 Olympics being in the center of the epidemic. In addition, the lack of education and heightened media attention has brought about a public fear of the virus. Mosquitos do not discriminate. Any mosquito carrying the virus can affect any person: black, white, homosexual, low-income. As the disease matures, it has the potential to be mainly contracted through sex rather than mosquitos and therefore affecting the smaller, minority groups. This is where we have the obligation grow as a society. We have to be aware of the social implications of diseases and learn from our mistakes.

Within the AIDs epidemic, while we have a long way to go combating prejudices, we are making small strides. An additional resource I found regarding the AIDs epidemic and its effects, draws upon the impact of posters to provide education and awareness. Graphic Intervention: 25 Years of AIDs Awareness Posters 1985–2010 is a cohesive selection of 153 posters that provide insight rooted in diverse visual strategies that may be seen in a number of different cultures. These posters come from archived international AIDs awareness campaigns and from donations from the Massachusetts colleges of Art and Design. These varying design strategies are inspired by the need to speak to a number of cultures and encourages all groups to respond to this public health crisis, positively and together.