When in Rome, Speak With the Romans
By Reggie Smith
September 26, 2013
I had a great experience while at the United States Conference on AIDS in New Orleans. I have been participating in the conferences for the past few years of this annual gathering. This year I went with a minimum of expectations and/or questions. The focus this year was on how the HIV epidemic is disproportionately affecting the Southeast, and understanding the effects of the so called "treatment cascade" -- a study of how people access and maintain treatment for HIV. With the access to care being a major issue, and the Affordable Care Act changing the lives of many, I hoped to get a sense of how to help make sure more people get the information necessary to make this transition. My role in the arena of HIV has evolved over the past 25 years from clandestine observer, to an active advocate. Now, I feel like a grandfather wanting to make sure that I share my experiences and act as a vessel for love and information. Wisdom has taught me not to burn myself out at these conferences, and to trust that the people and information I attract are exactly what I need. Most times that means having the faith to follow spirit, not the crowd, believing you are where you are supposed to be. The magical adventure I had this trip to New Orleans proved, once again, that the universe is perfect.
This year, I had more freedom to move around because our RISE team of bloggers included Dr. Luther A Virgil, Jr. and A'Lexius Culpepper. They covered much of the technical information from their unique perspectives as a medical provider and case manager respectively. We are ecstatic to say that you will see their contributions here in RISE regularly as content contributors! There was a lot of great information shared inside the seminars and symposiums, but how could we come to N'awlins and not go talk to the people? So our bell captain, Antoine, asked our driver and guide, New Orleans native David Bell, to take producer/videographer, Richard Shabazz and I, to find out how the HIV community has been affected by the trauma of Hurricane Katrina. Following the theme of the conference, we were interested to see who was (and were not) getting and staying in treatment for HIV. We were advised not to venture out into the "dangerous community," but this USCA conference was focused on the south, so we wondered about the real people in the city the committee chose to host it. After all, the data about HIV doesn't pertain to you if you are not in treatment, and the numbers can never tell the whole story. As Project Runway winner and conference presenter, Mondo, so aptly put it; "if you are not counted, you don't count." There is a great deal of data that has been gathered about who is in treatment, but it is impossible to know much about who is not in treatment. Despite any and all data, the number that matters most is ONE, and that one is you. In New Orleans, due to the ongoing catastrophic trauma caused by the floods, it is even harder to know who needs care. Watch this video (below) of an interview with residents of the 9th ward, in the shadows of the levies, to see what we found.
First, we talked to T.J. Rogers, an administrator at No AIDS Project, the largest AIDS service organization in New Orleans. He gave us some wonderful background about how his city is still dealing with the effects of Katrina. There are many life issues, like food and housing that take priority to HIV. The people of New Orleans, eight years ago, had the unique experience of being totally displaced due to the floods. Many of the people who lived here and were in treatment were exiled to other cities and have never returned and are now impossible to track.
I know that most of the people visiting here for the conference from other cities took the opportunity and time to imbibe the food and culture of the city. I, too, was swept up by the wonderful energy the city displayed surrounding the N.O. Saints NFL football rivalry with the Atlanta Falcons. Actually, visiting sports stadiums and arenas in different cities is on my bucket list, so putting another check in that column was big fun and very healing for me. As a vegetarian, I fell in love with the delicious food I was blessed with while here as well. New Orleans is a unique city, with a distinct culture. I am very happy that we took the time to get out into the community. I found the people are very friendly and hospitable, but underneath there is anger, bitterness and a feeling of betrayal about how they have been systematically pillaged by bureaucracy. The New Orleans culture is not replaceable, so those displaced experienced trauma, but so have those who are still here in a still broken system.
Meanwhile, back at the conference, I began to look at what demographic or culture of people is under represented at the conference, and may mirror some of the same issues as the people of New Orleans. I realized that heterosexual men, especially heterosexual men of color are never a part of any meaningful conversation about HIV. The infamous "down low" phenomena was the Hurricane Katrina for our particular demographic, because it sent straight men into self imposed exile, and they have yet to recover. I could count on one hand the number of hetero men I ran into that were here for the conference. We will have to change that dramatically if our families are going to thrive, and thrive we must. The data collected about how many people are in treatment, called the "treatment cascade," cannot accurately measure those not in treatment. The Affordable Care Act has the potential to make healthcare available to millions more people, but not if you are hiding and afraid to access it, or being too intimidated to demand it. I, and others, am committed to making sure heterosexual men are more fully represented. I pray that you are as well.
Mental health issues, homophobia, "heterophobia" and stress have created an atmosphere that has fostered the behaviors and attitudes that help perpetuate HIV disease. We need to be careful about being too insulated when we get together at these conferences to share gratitude, knowledge and information. Some Republican lead states continue to make a concerted effort to kill "the least of these" by making healthcare inaccessible, and that is unacceptable. We need think outside the box when it comes to finding ways to heal our communities and ourselves so that the waterfalls of the treatment cascade blesses us all. We can change the energy, but we need you to be willing to fight through the fear in order to make it happen. Don't go chasing waterfalls. It is time to RISE.
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RISE4WAR -- Focusing on Wellness, Awareness and Recovery
Reggie and Dionne Smith
My name is Reggie Smith. My wife Dionne and I have lived with AIDS since 1984. I am HIV+, she is not. We have experienced the suffering of families affected by HIV. With the love and support of many, we have focused on sharing holistic healing solutions for the infected and affected in an effort to diminish the stigma and increase awareness about the unmet needs of U.S. families and surrounding HIV. You are most welcome to share with me here and at my website, ReggieSmith770.
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