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Julie Sermen AIDS

I signed up for my Social Awareness in Art class for one reason, to become more socially aware. Strangely, as a painter I did not feel I could properly express my experience through my painting. I felt more comfortable interpreting the experience of my research as a written piece rather than as a visual one, it just made more sense to me that way. I started out the project trying to find more insight into the AIDS epidemic but instead found that the AIDS epidemic is not something that is independent but is instead interconnected to many things in our world, including race, class, religion and politics.

intro When I began my research I was not quite sure who to speak with but I wanted to talk to people involved in the epidemic who dealt with AIDS patients or who were individuals with AIDS. The first thing I did was browse the Internet for resources and information. I found several organizations where my research primarily stemmed from: Act Up, Gay Men's Health Crisis (GMHC), and Visual AIDS. I traveled to Yonkers, Brooklyn, The Bronx, and various places in Manhattan to speak with an assortment of individuals about the epidemic.

My first experience on my researching journey was an ACT UP meeting, held Mondays at 8:00pm at the Lesbian Gay Bisexual and Transgender Community Center. The meeting took place in a large room with wooden floors on the second floor. Everyone sat in a circle, might I add in the most uncomfortable chairs I had ever sat, and everyone in attendance proceeded to introduce his or her self. There was a group of students from a high school in Massachusetts that were on their spring break and came to New York to attend this ACT UP meeting. They were relatively quiet during the meeting. I felt inclined to raise my hand during the meeting, and my comments seemed to be regarded as an outsider's intrusion by the actual members.

The meetings are open to the public, but previous to the public meeting at 7pm they have a members only meeting. They handed out some flyers with information about their cause, recent pharmaceutical updates, as well as some anti-war propaganda. According to one of their flyers describing their approach to the fight against AIDS,

"Act Up uses non-violent civil disobedience to demonstrate the fight against AIDS. While we know more than ever about this disease, it is spreading faster than ever, and gaining ground. The picture "DRUG TREATMENT=FEWER AIDS DEATHS" wrongly eliminates the public urgency of new infections and inaccessibility to healthcare and prevention. The drama of AIDS is being replaced by its normalization. Normalization is fucked."

Here is some other information from their flyer describing their perspective on pharmaceutical companies:

Pharmaceutical companies are in the business of making a grotesque profit from people's sickness. Their research and development is limited solely to their expectations of profit. The current presidential administration hurts AIDS prevention. The Bush administration flunks AIDS education by appointing only conservatives to the Presidential AIDS Advisory Council -- promoting only abstinence 'education'. Bush blocks international drives to provide teenage sexual education because of his belief in chastity before marriage. His administration promotes a false morality and lack of information on condom use; his administration is using harassment in auditing AIDS prevention education programs. Most recently, the Centers for Disease Control eliminated information on condoms from their website.

Pharmaceutical companies were given top priority on the agenda for the meeting, and different types of civil disobedience were explored as means of protest towards these high-profit corporate enterprises. The members were planning a demonstration on the front lawn of the home of a pharmaceutical company's top executive in New Jersey. Ideas were put on the table by members of ACT UP: dispensing hundreds of pill bottles or demonstrating on Wall Street. Another plan of action was to put millions of shoes in front of the White House or another important building in Washington DC to represent the millions of people who have died of AIDS. There was a significant amount of tension in the room among the members. When I left the meeting, while I greatly admired their cause, I was a bit disappointed in how the group went through with the actions in support of its cause.

joyce My next inquiry into the epidemic was with Visual AIDS and, more specifically, an artist named Joyce McDonald. Visual AIDS is an organization that archives the work of artists with AIDS, as well giving grants to artists with AIDS. While I was visiting their website I came across Ms. McDonald's sculptures. I really liked them and was curious to know more about the artist who created them so I e-mailed Joyce. Several days later she e-mailed me back and informed me that she was speaking the following Saturday at The Yonkers Riverfront Library for the Sorority and Alumni of Delta Sigma Theta at their 'Arts Against AIDS' event.

That Saturday I hopped a train to Yonkers. The library is conveniently located across the street from the train station. I walked into the building and asked where the Arts Against AIDS event was being held, and the woman at the front desk told me it was on the second floor. I walked up the steps and into the crowded room. I picked up several pamphlets that were set up on a table about HIV, HIV testing, a guide to caring for someone with AIDS at home, and several others. I sat down about two thirds back in the audience. I tried to make myself as unnoticed as possible as I made an attempt at sketching the presenters as they spoke.

Two women spoke initially: Mindy Gollat and Mrs. Shawyn Patterson Howard. The Arts Against AIDS event started out with some statistics and explained that African Americans make up 50% of the AIDS cases in the USA, while they only make up 13% of the US population. It is estimated that 1 in 50 African American men have HIV and 1 in 160 African American women are HIV positive. They emphasized the importance of using protection during sex, good hygiene and the importance of educating people about AIDS. Education is one of the best weapons against spreading the virus.

I was the only person in the room who was not African American. The presentation was given by African Americans directed towards an African American audience. It was really informative to hear things from another perspective. They also had a singing group/dancers, The Mary Spells and The Union Baptist Church Liturgical Dancers who performed two songs about rising up above oppression. Some of the lyrics were 'we fall down but we get up againŠ' and another song entitled Shackles.

The director of Visual AIDS, Amy Sado, spoke and introduced the three artists with AIDS that were to present their work. Fredrick Weston recited some poetry he wrote, Blue Bathroom Blues, and showed slides of his artwork that went along with the poetry. Clifford Smith was the next artist to present. He made mandalas out of various mediums, but the ones that struck me most were made out of eggshells; they were intricate and beautiful. The last artist to present was Joyce McDonald, and when she got up to speak she looked so healthy; she had a gleaming smile on her face and tons of energy. I made the naïve assumption that she would look sick or that there would be some distinguishing mark about her but she appeared to be the perfect specimen of health. Joyce showed slides of her sculptures and sang a song about her life story. She's been through so much and is so strong spiritually. After the artists presented their work everyone (including myself) sang Amazing Grace. After the closing reception, I went over to Joyce and introduced myself. We talked for a while, but I didn't get the opportunity to interview Joyce that day.

Several weeks later I met with Joyce at Popeye's at The Fulton Street Mall in downtown Brooklyn. We walked several blocks to her mother's house in the projects. It was a chilly afternoon and as I walked along with Joyce I was the only white person around. To see the blatant segregation was unsettling. Several times on the walk to her mothers we stopped to say hello to someone that she knew on the street. joyce She showed me the family photos on the wall of her mother's apartment and gave me a little family history. Joyce had grown up in that very apartment. When she was a child everyone had their doors open in the projects; the neighbors were like relatives. Her father was always taking her on trips, and he encouraged her to enjoy nature. She liked to go exploring and walking in the rain. Joyce went to high school in Manhattan; she was shy and got teased for being black. When she was in 10th grade she worked for a time with the terminally ill.

There was a man she took care of whom she had to give a spinal tap. When he died she took the spinal tap needle and she showed one of her classmates in school. One of the teachers saw it and called the police. Two white police officers came and told her she was in trouble, arrested her and brought her to jail. She cried and cried in that jail cell. She was in there with a bunch of prostitutes; they told her not to worry and that everything would be fine. Finally her parents came and picked her up. After the arrest her school life went down hill. There was a lot of prejudice from the teachers. Black teachers used to encourage her, but there were few of them. She felt betrayed, shamed and wrongfully accused after the incident. She started to experiment with drugs. The first drug she tried was heroin and at first it did not seem to be a habit. Joyce started to skip school and she found a job at a bank. One day when she was playing hooky she met a married man whom she befriended. He was a real smooth talker; he was, as she calls him, 'a wolf in sheep's clothing'. She finally saved up enough money from working at the bank for an apartment and left home. At this point she and the married man had been friends for a year or so. Shortly after she had moved into the apartment he showed up with a suitcase in his hand and moved in with her. She did not know it but he beat his wife and soon he would be beating her. He beat her many times and, though it was difficult she eventually got out of the relationship. When she finally left, she was pregnant and had to have an illegal abortion.

After the abortion she felt lost, empty and became suicidal. She moved in with another man and when rent was due, he told her to sleep with the landlord. At that point she saw no other way she could take care of things so she slept with the landlord. That led to her becoming a young prostitute. At this point she had been away from home for over a month and hadn't contacted her parents. One day she was standing in a doorway and her family drove by in a car. They did not see her, but she saw them and she still remembers that day like it was yesterday.

While she was prostituting a man kidnapped her; he stripped her out of her clothes, raped her and put a butcher knife to her throat. He started to pull the knife and stopped, he dropped the knife and threw her out of the van. Now when Joyce looks back on the situation she can't believe she survived and believes that god must have saved her.

Then she met the man with whom she would have two daughters, both born addicted to drugs. Her daughters gave her a new look on life. She got a job and became a 'functional' drug user. Nine years ago she finally stopped doing drugs, she wasn't sure why at the time. She just felt this urge so she walked into the church over on Gold Street and reverend Dr. Mark Taylor told her if she wanted to change, come now, and she did. She stopped doing drugs and found god and that has been her driving force since.

Soon after she got clean she found out she had AIDS. She is not sure whether she contracted it sexually or intravenously. Since she has gotten AIDS she does not take any medications. Joyce believes in staying spiritually strong. Prayer is her weapon against AIDS , giving her the power to deal with AIDS and to deal with life. Now Joyce is a minister and speaks about her life experiences and about her Lord and Savior Jesus Christ. Joyce makes sculptures that depict women and each one represents a different experience in her life. There is a certain strength about them, a certain pride and perseverance which reflects the artist herself.

Several days later I went to the Visual AIDS archive in Chelsea. They have thousands of slides from several hundred artists from all over the world that have HIV/AIDS. While I was there looking through the slides a man came in with his partner. He was an architect who had contracted the virus. He was interested in Visual AIDS and their cause. Although he wanted to donate money, he did not want his own work on the website because his family did not know that he had AIDS and he did not want them to find out, as there was a chance they might browse through the website. Amy and Nelson, the two people I met that worked at Visual AIDS were incredibly helpful as I looked through the archive. They gave me contact information for several artists so I could get in touch with them about my project.

rubinr One of the numbers I received was for Rubin Gonzalez. I called Rubin on a Tuesday afternoon, told him that I saw his work at the Visual AIDS archive and was wondering if we could meet for an interview him and so I could check out his work. He agreed and that Saturday my friend George accompanied me and we headed over to his apartment in Hell's Kitchen. We sat downstairs in the lobby and talked.

Rubin was born in 1955 and grew up in Harlem where he was one of 10 children. Rubin's parents were from Puerto Rico. When he was ten his father died. Growing up, his mother, as a single mother, didn't have much time for him because there were many children to take care of. Rubin got in a lot of fights at school. He was sent to a group home and raised by a priest; he never graduated high school. Despite being raised by a priest, or possibly because of this, he argues passionately about atheism. When Rubin was younger he hung out in Chinatown, Spanish Harlem, and the Village. He is inspired by other cultures and also goes to galleries for inspiration. His curiosity has led him into African, Native American, Egyptian, Japanese, as well as Folk art. By mimicking European artists he learned to draw and paint. He has little formal art training but took a couple of classes at The Art Students League. The artwork that he creates is from found objects or refuse, and is inspired by the materials. He prefers not to spend money on his artwork and to utilize materials that are readily available. Rubin has taught art classes at the New York Public Library and he has been a counselor utilizing his creative skills at the Catholic Guardian Society as well as The Green Chimney Group Home.

Seven years ago he was diagnosed with AIDS. He went to get a second test because he did not believe it. At the time when he was diagnosed a lot of people called AIDS 'gay cancer' and the Catholic Church shunned homosexuality then as it still does now. Rubin is in exceptional health. There was a time when his T cell count was down to 23, but it is now up to 1000, which is an incredible improvement. His doctor wrote a paper on him because this type of improvement only occurs in one in a thousand cases. He attributes his improvement to his good immune system, remarking on the fact that he was never a sickly child. Rubin takes four different types of medication daily. Right now Rubin tries to make the most of his life, set goals and spend time with his nieces and nephews.

krishna I met with Krishna Stone at the Gay Men's Health Crisis Center (GMHC) on a Monday afternoon. She is the manager of Technical Assistance/Outreach and Event Planning at the Terry K. Watanabe Volunteer Center at the GMHC. One of the first questions I asked her was how she got involved in working at the GMHC. Krishna told me that she had been involved in the HIV/AIDS Community since 1985 and had a lot of friends and co-workers that have died of AIDS. Before we met up she suggested that I pick a specific community or culture that I was curious to know more about because there are many different issues that come into play with each individual culture and to narrow it down would give a clearer more specific insight. I asked her about Latino women because I think their culture is visually interesting, and I live on the Lower East Side where there is a fairly large Latino population. She explained to me the issues that could surround these women, such as machismo (male dominance), immigration, religious shaming, poverty and more. For example the Catholic Church, which in many Latino communities has a strong power base, opposes the usage of condoms and sex outside of marriage. The women often feel that they contracted HIV as a punishment from God for having sex outside of marriage. Krishna when she speaks with these women offers them spiritual alternatives through workshops and retreats. She was ordained in the faith community, the Sanctuary of the Beloved, which deals with healing with permission -- the person's concept of the higher power can be anything; they serve through free will and individual expression, in the effort to aid transformation. This community is built from many resources and is reinforced with support from others. Another prominent religion is Santeria, which is a syncretistic religion of Caribbean origin. It incorporates the worship of the Orisha, beliefs of the Yoruba and Bantu people in Southern Nigeria, Senegal and Guinea Coast and combines with elements of worship from Roman Catholicism. Its origins date back to the slave trade when Yoruba natives were forcibly transported from Africa to the Caribbean. Upon arrival, the Roman Catholic Church usually baptized the slaves, and their native practices were suppressed. By equating each Orosha of their traditional religions with a corresponding Christian saint they kept their old beliefs alive. The rhythms and forms of Yoruba religion are said to be fundamental to the development of many forms of African American music from gospel to blues and jazz, and to musical forms such as Salsa and Latin Jazz.

During class one week Paul Marcus came in and showed the class some slides of his work. He had done some installation pieces on AIDS and had taken care of a woman with AIDS. Paul had visited her several times a week, ran errands for her when needed and she became an important part of his life. They had formed a close relationship and he was very upset when she died. His brother is a doctor who specializes in the care of AIDS patients; Paul was kind enough to give me his brother's contact information. I called his brother, Dr. Marcus, the next day and we arranged to meet the following Monday. That Monday my friend George accompanied me to The Women's Center at Montefiore Medical Center in the Bronx, where Dr. Marcus works. The Women's Center is a small building, a house that is now converted into the center. I did not know what to expect when I arrived, because I was not sure if it was a part of the hospital where sick AIDS patients lived. Dr. Marcus showed me around and explained that The Women's Center is mostly a resource center for persons in the community. Dr. Marcus sees many AIDS patients and he is the personal doctor for many patients with AIDS at the Montefiore Medical Center.

Dr. Marcus took several hours out of his morning to speak with me. He informed me of the epidemic in relation to geography, gender, race and really opened my eyes to the epidemic as being a small part of a larger scheme of things, and the interconnectedness of all things.

In the mid-1980's Dr. Marcus began working with AIDS patients. Of the 500-600 patients that come into the Women's Center, 80% of them have HIV. Most of the population Dr. Marcus sees are women because women are most likely to seek help, for the sake of their children. Men, on the other hand, will not seek help until they are sick. The racial and ethnic breakdown of the population that Dr. Marcus sees is 5% white, 60% Latino, and 35% African American. 10% of the HIV population has contracted the virus through homosexual male transmission, 60% through drug use and the rest is through heterosexual transmission or mother to child infection. Almost 100% of Dr. Marcus's patients are on Medicaid. In New York State there are 140,000 people diagnosed with HIV -- of those, 120,000 are in New York City.

To give you some history on the Bronx, where Dr. Marcus works, during the 1800's the Bronx was a farm area during the early part of the 1900's (20-30's). After this the population changed to a Jewish European and Italian population. Another change in population occurred during the 1960's. During this period the population shifted when African Americans and Latinos moved to the Bronx and during the 1970's Latinos and African Americans comprised the poorer population. During this period landlords started torching their buildings for insurance money; this created homelessness, a lot of displacement and injection drug use in SRO Hotels and shooting galleries. The AIDS epidemic grew in parallel with the growing injection drug use, and spread further with the onset of crack and sex with drugs. In South Africa, 1 in 4 adults have AIDS and in the poorest areas of the Bronx, areas like Hunts Point and Mott Haven, 1 in 4 men ages 14-45 are infected. The level of poverty is such that it is like a third world country inside a first world country. There are 25,000,000 people in sub-Saharan Africa diagnosed with AIDS. Less funding is going to the AIDS epidemic in the US because among the male homosexual population the epidemic is relatively under control: now the epidemic is most problematic among the poor. As for the method of contraction, during the last 8 years, drugs and heterosexual infection surpass the male homosexual infection rate. In the Bronx heterosexual infection continues to climb.

There are many obstacles that prevent people from getting necessary care. Lack of education, depression and drug use prevent people from taking their medications and getting adequate care. For the low-income population contracting the virus, the cost of medication is prohibitive. The cost of medications for one person for one year (if they are taking four medications) is about 12,000 dollars. Interestingly enough the money that is spent on the war in Iraq could wipe out the AIDS epidemic completely.

Aid For AIDS is a program that tries to assist those in need of medications who cannot afford them, yet it is not the most reliable method of getting necessary medications: when a person with AIDS dies, their left over medication goes to Aid for AIDS and through a lottery system the medications are distributed.

I left Dr. Marcus's office feeling saddened by the startling statistics and reality of things but at the same time glad to be awakened to these things. After speaking with Dr. Marcus, Joyce McDonald, Rubin Gonzales, and Krishna Stone my perspective on the epidemic changed. To see things if even for a moment from another person's point of view is a beautiful thing. This urge kept me going along my journey and although I do not feel I am completely at the end I feel satisfied with what I have learned so far.