AIDS Survival Syndrome Excerpt from Lust or Love: A Gay Odyssey

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received_10153359466535938By: Sidney Skipper

“Sweating, heart palpitating; suddenly I’m awake, sitting up in bed. “My body, something is happening inside my body.” The spot where I was sleeping is soaked. It’s 4am in the morning. Kenny is laying sound asleep next to me. “Something is happening inside my body.” Thoughts of AIDS rush around my mind: Flu symptoms, night sweats, high risk, enlarged lymph nodes, no cure. My anxiety is replaced with a decision to get tested immediately.

I try to go back to sleep, but when Kenny wakes at 7am I’m still wide awake. “We’ve got to get tested.” Kenny doesn’t know what I’m talking about. I show him the soaked spot on my pillow, and explain this dread fear that I have. “I may have AIDS and I need to know.” Now, Kenney is the type of man who feels that as long as he isn’t sick, he doesn’t want to know, or need to know, whether anything’s wrong. It’s important to me so after a couple of days of discussion he agrees to go with me to get tested for HIV.

It’s early October, 1989, the leaves on the trees are emblazoned with colors ranging from lush browns to bright yellow, vibrant red and orange. The air is crisp and clear. On the way to Henry Ford Hospital, where HIV/AIDS anonymous testing is done, I look out of the car window at natures kaleidoscope of color as if I’m looking at it for the last time.

When we arrive at the hospital we’re directed to an isolated wing where one person is drawing blood and counseling. Very little is known about HIV at the time. We’re told that we would have the results of our blood test in two weeks. “Two weeks.” Needless to say those two weeks are filled with visible anxiety for me. Kenny on the other hand appears apathetic. I call Kenny’s apathy invisible anxiety.

The phone is ringing. It’s 9am October 27, 1989. “Hello.” “Hello, Mr. Skipper, this is Bill Townsend. We need for you and your partner to come in to the clinic to receive your test results.” It’s the counselor from the testing center at Henry Ford Hospital. “Can’t you give them to me over the phone?” “No,” is the response, “Against policy.” I knew that. I don’t know why I asked. “OK, we’re on our way.”

The Palmer Park area off of Woodward Ave. and six mile road in Detroit was once a predominantly Jewish neighborhood. Now it’s a predominantly gay neighborhood. Most of the gay black males and females in Detroit pass through Palmer Park at some time in their life. The rent for apartments and housing surrounding the park range from moderate to very expensive accommodating tastes for the simple as well as the sublime. The park is about six miles in diameter, with a wooded area, a pond and an old log cabin with some historical merit. Summer art fairs are held there, the Hotter Than July Gay Pride picnic is also held there. There are areas for family picnics, a playground, golf course, tennis courts and a swimming pool for the children. The parks diametrically round landscaping makes it ideal for inner city joggers. Its large parking lots also make it a superb cruising spot for straight and gay cuties eager to show off their sexy bodies, and their array of wonderful new cars that only Detroit can produce.

After leaving the appointment at the Henry Ford Hospital clinic, Kenny and I drive to Palmer Park and park in one of the lots under the canopy of the magnificent autumn sky. We finish of a fifth of rum and coca-cola, and smoke a joint. Our HIV test results came back positive. We don’t discuss how we got the virus or who infected us. We don’t accuse one another because we have always practiced safe sex. We must have had the virus when we met. At this point where we got the virus from is not important. What to do next is. Although the doctor told us that we would be dead in a year, I’m not depressed. I’m a child of the sixties, the generation that questioned the inherent value of everything, and believed that we could achieve anything. “Pass the joint Kenny.”

That was twenty-five years ago. I watched and waited for death while my friends and lovers passed away before my very eyes. Kenny passed away in 2005. I woke up one day and realized that I had survived what they now call the “AIDS Generation,” those of us who contracted HIV over twenty years ago when it was a death sentence. We helped to build the successes that the newly infected now enjoy through years of advocacy and caring. We are the last of our generation. We hold all of its memory, all of its history. In the throes of a plague no one thought about those of us who would survive. How do you deal with life after expecting to die?

The national strategy to tackle HIV/AIDS now is focused on the youth and prevention, as it should be. The needs of Long Term Survivors are somewhat different and are only beginning to be addressed. Many HIV long term survivors suffer from what is known as AIDS Survival Syndrome (ASS), a form of PTSD. In 2012 Tez Anderson and Matt Sharp launched a grass roots community group for people who survived the early years of the AIDS epidemic, called Let’s Kick ASS. ASS is defined by chronic anxiety, isolation, survivor guilt, depression, substance abuse, insomnia, sporadic anger, sexual risks and a lack of future orientation. Those without partners often have less income making them vulnerable to financial hardship. Some are too emotionally damaged to form new relationships or friendships for fear of being abandoned. Given a year to live some liquidated their assets, signing away their financial future. Between 2009 and 2012 suicide accounted for 4% of all deaths among people living with HIV in San Francisco, far above the national average of 1.5%. Like in the early days of the AIDS epidemic when we rallied to care for each other and ourselves, we must rally once again to understand and overcome ASS.

UNIFIED – HIV Health and Beyond salutes our long term survivors. Since 1983 UNIFIED has been a port in the storm and trusted ally for people living with HIV. UNIFIED remains dedicated to servicing the needs of those infected and affected by HIV by advancing prevention, access to health care, community research and advocacy. After Kenny died I reached out to AIDS Partnership Michigan, now UNIFIED – HIV Health and Beyond. They helped to educate myself and my family about the realities of HIV. For more information about ASS and the Lets KICK ASS campaign visit their website at http://letskickass.org/UNIFIED is available to assist you with any issues you may have. Please feel free to contact us, 313-446-9800. www.miunified.org  You are not alone.

Sidney Skipper

PLHIV Stigma Index Leadership Council member

Author, Motivational Speaker

PLHIV Stigma Index Detroit Visits D.C.

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received_10153359466535938 By: Sidney Skipper

Sidney Skipper on his visit to Washington DC to present research findings from The PLHIV Stigma Index Detroit-

    He’s from Ethiopia. A gentle English accent falls effortlessly from his lips.  I’m in our nation’s capital, Washington DC, to attend a meeting with colleagues to discuss our grant proposals for AIDS United’s Positive Organizing Project grant, on HIV related stigma. He’s the taxi driver bringing me to my hotel along the tree lined avenue of the Potomac River. Across the shimmering river, coming up on the right, I see the staid, white, elongated, majestic, marble columns of the Lincoln Memorial. The taxi cruises past it, and I gaze at it in awe as it disappears in the distance. When we arrive at the Palomar Hotel, I step out of the taxi into a cool spring day, blue skies dotted with bulbous puffy clouds, smiling at the thought that I just left one inch of snow in Detroit. Walking into the grand hotel lobby reminds me of my early years in the Theatre when I toured Europe and the Caribbean. I walk a lobby like it’s a catwalk, all the way up to the check in desk.  He’s Nigerian and has kind eyes, and then I realized that he’s giving me a room on the 15th floor via a glass elevator. Did I mention that I’m afraid of heights?

   The AIDS United offices are not far from the hotel. In the taxi ride there the next morning I see cherry trees lining the road that were in blossom last year when I was here. I ring the bell to enter the AIDS United office building.  The facilitator of the meeting invites me in and graciously guides me to my morning tea, in a room that smells like coffee brewing. The smiling face of a beautiful brown skin woman in a crew cut is the first of my colleagues that I meet. She is a Health Outreach specialist at Chicago’s Women AIDS Project which has been empowering women living with HIV since 1988. Slowly other colleagues begin to enter the room.  Each one brings years of HIV/AIDS expertise in with them. We shake hands, introduce ourselves and put on a name tag.

    Michael Kaplan, the CEO of AIDS United opens the meeting on a welcoming note. The first person to present is a tall together brother from Indianapolis that leads Brothers United Inc., which focuses on addressing the impact of Indiana’s expanded Medicaid program on people living with HIV. Brothers United also works towards establishing a statewide consumer advisory board for HIV related issues by engaging both clients and lawmakers. The next person to present titles his presentation, The Winter Gathering of Maine. When he speaks of being able to look out of his living room window at the ocean, the isolation of Maine seems to be an unlikely place to bring people living with HIV together to build community, education, advocacy and strong allies. But when he glowingly tells us about how the AIDS United POP grant made it possible for his team to develop a Peer Advocacy and Peer Ally Group of HIV positive people in Maine.  Maine didn’t seem so isolated after all. Sitting next to me is a New Yorker, dreadlocks, stylishly dressed and well spoken. He’s VP for Community Mobilization at Housing Works in New York City.  They are dedicated to building a new generation of positive leaders, speaker bureau training. Facilitating leadership roles of the most marginalized of our community not just “at the table,” but, “setting the table,” as the well-spoken brother with dreadlocks so eloquently puts it.

  I glow during the lunch break while conversing with a warm pretty young blonde that left her new born baby girl to grace us with her presence. She’s a Field Organizer in Atlanta for The 2015 Youth HIV Policy Advisors (YHPA) program. They have trained hundreds of youth advocates at the Capital to testify at HIV hearings on Capitol Hill. She can’t wait to get back home to her darling baby girl. She has us all laughing at her new mother stories.  She says last night at the hotel was the best sleep that she’s had in months. After lunch our Transgender colleague from Philadelphia presents. She has  smooth caramel colored skin, hour glass shape, almond eyes and shoulder length black hair parted on the side. She’s stunning. She starts nervous but captivates us with her finesse and beauty as she speak about Mazzoni Center: Trans Leadership, Advocacy and Engagement. Their Sisterly L.O.V.E. workshops take a holistic approach to working with the Trans communities by acknowledging that HIV is one of many issues that impact Trans women.  Positive Women’s Network; Philadelphia Chapter, are the next to present. I have had the pleasure of meeting many talented women affiliated with the National PWN. Their members are champions of stigma and are on AIDS Service Organizations (ASO) organizational boards.

    My presentation comes last in alphabetical order.  Its titled, The People Living With HIV Stigma Index: Detroit. After hearing the presentations of my colleagues I felt somewhat humbled, so slowly I began by saying………….. Myself and ten amazing people living with HIV and our allies piloted the stigma index in Metropolitan Detroit back in 2014.  A diverse group of seventy individuals living with HIV were interviewed. Once the interviews were complete, measurements of internalized stigma, perceived stigma and social isolation were analyzed according to age, race, gender identity, economic hardship and a few other parameters. Based on these findings and out of all of the social determinants of health surrounding HIV infection, those of us on the leadership council chose five advocacy priority areas that we wanted to concentrate on.

   At the top of the list is, internalized stigma, because 60% of our respondents stated the they felt ashamed of their HIV status, 46% felt worthless, having low self-esteem. Our second advocacy priority is HIV related stigma in the Faith based community. The Faith Based Community can play a vital role in tackling HIV stigma by offering spiritual support. To that end the stigma index Detroit is collaborating with Rev. Michael Schuenemeyer of the United Church of Christ, to host a two day seminar, titled, Framework For Dialogue, where we will bring together members of the faith based community and people living with HIV, in a conversation about HIV stigma in the faith based community. Our third advocacy priority is HIV Criminalization. 88% of our respondents stated that they did not trust Michigan courts to give them a fair hearing if they are accused of not disclosing their HIV status to a partner. Our next advocacy priority is Youth Education and Advocacy. The population of Detroit is 80% black. The CDC has predicted that 1 out of 2 black MSM with be infected with HIV in their lifetime if things don’t change. Our last advocacy priority is Transgender Issues. Trans women have the highest rate of HIV infections in the country.

    We shared an overview of our findings in a series of, hour long, Stigma Index, Lunch and Learn power point presentations, at the four major ASOs in Metropolitan Detroit, at the John D. Dingell VA Medical Center, I am a US Navy veteran, and at the University of Michigan. In December 2015 I attended The National AIDS Conference in Atlanta where I co-facilitated a roundtable on GIPA and the Stigma Index. In February of 2016 I was invited to appear on a local TV program and given ten minutes to speak about the Stigma Index. And this Thursday I am invited to a meeting at the White House on HIV Stigma: Translating Research into Action, Reducing HIV Stigma to Optimize HIV Outcomes. Our mission for this grant period is to continue supporting people living with HIV in Metropolitan Detroit, by encouraging leadership training for people living with HIV and others in the community. Educating them about HIV stigma, and building networks and safe spaces and support systems that will self-empower them. I close my presentation with a call to action:

 Speak up, speak out, help fight HIV stigma.

Introducing UNIFIED

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UNIFIED Logo

INTRODUCING: UNIFIED – HIV HEALTH AND BEYOND

Detroit, MI, December 1, 2015. World AIDS Day.  Today, on World AIDS Day, AIDS Partnership Michigan (APM) and HIV/AIDS Resource Center (HARC) introduce the name of their newly merged organization:

UNIFIED – HIV Health and Beyond.

In order to strengthen the response to HIV in Southeast Michigan, AIDS Partnership Michigan and HIV/AIDS Resource Center have merged and will now be known as Unified – HIV Health and Beyond. The merger will enhance capacity in key areas, including programming, access to funding, community-based research and delivery of HIV-related healthcare services. Programming will be expanded for greater impact through shared resources, services and expertise to provide a comprehensive network of support for people at risk for or living with HIV across the region. Unified – HIV Health and Beyond will serve ten counties with a population of nearly five million residents and where 63% of people living with HIV reside. Services will be delivered from the three existing offices in Detroit, Ypsilanti and Jackson.

Rooted in the history of its fight against HIV, UNIFIED – HIV Health and Beyond advances prevention, access to healthcare, community research and advocacy.  The vision for the future is to become a nationally recognized multi-service center creating positive change through regional impact, innovation, and sustainability to promote HIV health and beyond.  UNIFIED will use innovative approaches to help residents of Southeast Michigan living with or affected by HIV achieve optimal health through compassionate direct care, support services, prevention and education.  UNIFIED – HIV Health and Beyond will be an effective and powerful voice, providing leadership and advocacy for the communities it serves.

UNIFIED – HIV Health and Beyond will continue to fight HIV at the grassroots level in both urban and rural communities where it is most prevalent, especially for young people, people of color, men who have sex with men, and injecting drug users.

The following comprehensive HIV services remain available and accessible to all who need them.

• Community Mobilization Campaigns
• Healthy Relationships/Prevention for HIV+ Individuals
• HIV Counseling and Testing
• Hepatitis C Testing
• Medical Case Management
• Medication Adherence Counseling
• Behavioral Health Services
• Tobacco Reduction Services
• Health Insurance Enrollment Assistance
• Michigan HIV/STD Hotline/Website
• Syringe Access and Overdose Prevention
• Peer-Designed Prevention Programs
• Prisoner Re-Entry Program
• Housing Assistance and Homelessness Prevention
• Support service including:
o Food and cleaning supplies pantry
o Emergency financial assistance
o Transportation for medical appointments
o Support groups

By joining together, HARC and APM see themselves as being better prepared for the future and proudly embrace their new name: UNIFIED – HIV and Beyond.  It is only fitting to share this exciting news on World AIDS Day, a day for renewing our global commitment to fighting HIV.

AIDS Partnership Michigan (APM) was formed in 1996 through a merger between Wellness Networks, Inc. and AIDS Care Connection. APM was established to better address the emerging AIDS epidemic in the Detroit/Metro area. AIDS Partnership Michigan has always worked by providing education and services to help prevent the spread of HIV and to help connect people living with HIV to needed services

HIV/AIDS Resource Center (HARC) was founded in 1986 by a group of volunteers to provide HIV/AIDS related services to the people of Jackson, Lenawee, Livingston, and Washtenaw counties. Over the past decade, HARC has developed into a leading HIV/AIDS services provider in Michigan.