An Interview with Benita

This post is based on an online interview form submitted by Benita on December 4, 2012.

Tell us about yourself.   My name is Benita Terrell.  I am HIV+, and have been since 2000. I did not know how it was contracted. I am currently a student at Community College of Philadelphia, majoring in behavioral health and human services. Once I graduate, I plan on giving back what was given to me - help. I also sing with the Philadelphia FIGHT gospel choir. We perform at events like World AIDS Day. In addition to that, I was recently hired by Philadelphia FIGHT as a peer counselor. 


What made you get involved in the HIV/AIDS community?   We as a group should always give back or help in any capacity we can.  My heart goes out to disadvantaged people and those who can not take care of themselves. I just want to help.  When I give back, I find joy within. 

If you could change one HIV policy or implement a new policy, what would it be?   The federal government, HRSA, and the CDC are some of the organizations that determine how money is distributed into my community.  I would change the amount of dollars being sent to areas like case management, and put MORE dollars into HOUSING!  Also, I would turn several abandoned homes into an entire complex for people living with HIV/AIDS.  Atlanta, Georgia has several of these.  

Who do you look up to or admire?  President Obama, Tina Radin (Philadelphia FIGHT), Jane Schull (Philadelphia FIGHT), Bishop McNear (Philadelphia FIGHT), Kathleen Squires (infectious disease doctor), Ruben Wiggins Sr. (my dad), Judy Dyitt (my sister), and Ben Malone (my second dad).

What do you think is the biggest challenge facing people living with HIV/AIDS?   Finding affordable housing!  No house [means] nothing to store medicine in.  [With] no medicine, we die!

If you found out your friend was recently diagnosed with HIV, what would you tell him/her?  "It is not a death [sentence]."  I would also let them know that I would help any way I could.  I would advise them to always use condoms, and tell their partner about their status.

What do you think? Would your answers be different? Take the interview yourself online, and we'll post your responses here.

Joe's Interview

This post is based on an in-person interview conducted with Joe in the Office of HIV Planning at the end of November 2012.

Tell us about yourself.  My name is Joseph.  I've been involved with the Office of HIV Planning through the Positive Committee for several years.  I enjoy it very much - it's always a learning experience and I enjoy the group that comes with it.  I like that [Positive Committee meetings] are a planned activity on a set date, and there are good guests and information.

What made you get involved in the HIV/AIDS community?  It had everything to do with friends of mine who were losing their lives to the virus.  I started out helping them by going to doctors' appointments [with them] and being with them.  The most dire cases me me realize [HIV] would be around for a while.  I made a commitment to be in the game.  I understood that people from all walks of life were being affected, and it was always about trying to beat this.  I've seen a lot of stories from people who live with it successfully.  I'm proud that the status issue is irrelevant to me, that I can see beyond it and it does not have to come up in conversation.  Status means nothing.  I've found friends that have successfully managed their lives and moved on, and it's really about overcoming.

If you could change one HIV policy or implement a new policy, what would it be?  Believe it or not, what I would clearly like to see is the notion of HIV and stigma be totally disjointed so people understand that HIV is just a virus, and there should not be a window looking into how it was contracted.  I wish I could see HIV policy like [that of'] most diseases, where no one questions how you go it.  Can you legislate that?  Probably not - it's all about education.  People just don't know.  I would love to see mandated K - 12 HIV education.  [HIV is] manageable.  I don't want anyone to get it, but support services are there for you so you don't have to feel any shame, or feel that you're not a complete person.  A lot of people have actually become more aware of their health and the health care system.  We all need education about HIV, because you don't really know about [these issues] until you're confronted with them. 

Who do you look up to or admire?  I'm a news junkie, and I'm a talk show fan.  I like it when things are presented as conversations.  I really like this person, and I know she comes with other points of view, but it would be Kathie Lee Gifford.  She's fun and upbeat.  She's done things in the past, but she has a relatability factor.  I just understand where she is at in this point in her life.

What do you think is the biggest challenge facing people living with HIV/AIDS?  I think the biggest challenge is acceptance.  The other big challenge is that you will be committed to medicine for a very long time, and you have to understand that it will make changes to your body.  But with a window of living that is so long, people can age with HIV.  At some point, you'll be taking a pill for something anyway.  It's all about accepting it, and understanding that you'll be committed to doctors' appointments and some dos and don'ts for the rest of your life.  It's a struggle for some.  I've known some people that went on [drug] holidays early on, and it would show.  They would feel different, and fall into patterns that weren't good for them.  You have to accept it, and have the courage to say, "This is what I'm going to be doing."  There are so many interventions to let you know you're doing things for the right reasons.

If you found out your friend was recently diagnosed with HIV, what would you tell him/her?  I am so prepared to answer that, thanks to the Office of HIV Planning and the conversations we've had.  If someone said, "Joe, I'm HIV-positive," my next words would be, "Get into treatment."  That's where it all starts.  There are doctors in their neighborhood.  We are extremely fortunate to have this network.  It's so essential.  A lot of people don't know it's out there, so I try to speak up.  A lot of services are absolutely free, which is the tipping point for getting people into care.  Once you get into these systems, you start looking at other points of your health.

What do you think?  Would your answers be different? Take the interview yourself online, and we'll post your responses here.

Dan's Journey



This post is an excerpt from a speech Dan Mangini delivered at a World AIDS Day event in 2012. Dan is a very active member of the LGBT community in Philadelphia, as well as an educator, advocate, and public speaker for his passion, HIV/AIDS.  Since his near-fatal diagnosis back in 2005, he has dedicated his time and energy to be the voice/face for this cause.  He has been compelled to do so since so many cannot "come out" with their diagnoses due to the stigma and prejudice surrounding this virus to this day.  He created PoZitive Encounters, the FIRST social night out for those living with HIV in 2009 and has worked nearly full-time as a volunteer with Siloam, which does a mind/body/spirit integrative approach to wellness for those infected/affected.  He was awarded the 2011 and 2012 Philadelphia Rainbow Award for Volunteer of the Year for his work by the LGBT community in Philadelphia and received the Philadelphia Gay News  BEST ACTIVIST Award for 2012. He currently works as a Recruitment & Outreach Consultant with the University of Pennsylvania's HIV Prevention Research Division where he recruits for the HIV vaccine trials currently underway there.

We live in a world where appearances seem to be everything to so many. However, I have learned that often times, what we see and often, even what we believe, are not always necessarily so.

I was born into a large middle-class Catholic family whom I love very much. Looking back through pictures taken at various times, it seems like I had an ideal childhood. Appearances, as we know, can be very deceiving. At a very early age, I experienced the first of many disconnects that life would throw at me. I realized that as a child of barely three years old, that I was very different. I was not like my other four brothers or other boys around me.

This difference, although I did not understand it at the time, did not even go unnoticed by my own father whom rejected me and withheld his love from for many years to come. Not understanding what it was or what I had done wrong, I hid the shame and guilt of my own truth away inside of me and sought to be what everyone seemed to need me to be. It was soon after dealing with all this confusion that I became the victim of sexual abuse over a period of several years. The added pain and guilt were more than a small child should ever have to deal with, yet I endured. I chose to continue to hide all this away for surely this is what a good child was supposed to do. It is amazing how adept a person, even a child, can carry bury emotions and before long, accept them as being normal, familiar feelings and continue to find them time and time again throughout their lives. Years, later, these series of disconnects would come rushing back to the surface and become part of my undoing.

Things began to improve for me once I began to find kindred spirits in my friends in high school and college. I graduated from St. Joseph’s University, met my partner and began embarking on a career that I loved. My partner and I were blessed to become the parents of a niece placed in our custody and whom we raised. To me, I was living my American Dream, and I began to become more comfortable in my own skin, being the “me” that I felt I was. Sadly, what appeared to be a happy life quickly dissolved into a nightmare that I could not ever have imagined. In my mid-thirties, I fell prey to a horrible disease. This disease was addiction.  My addiction was with a drug known as crystal meth. After a few horrendous years spent in what I refer to as a living hell, for I cannot imagine nor do I want to, a worse place for a human to find themselves AND after putting my life in harms ways hundreds of times, I decided that I could not go on any further. I was finally void of any sense of connectedness to another living being, God and worst of all, to myself. I had failed and failed miserably at this journey we call life. In a last ditch attempt to end my agony, I attempted suicide by overdose. Once again, just like everything else I had tried, I failed.

Not soon after, there was a glimmer of hope. On Dec 30, 2003, I was arrested. I had lost my freedom but in return, was freed from my addiction and spared my life. While I spent those 15 months away, broken and alone, I spent all my time soul-searching. I needed to understand how my life had gone so terribly wrong and what the reasoning behind my even being alive was. I was determined that going forward I was sure I was meant to make a difference although I wasn’t sure just how that was to be and that I was going to make amends to all those whom I had hurt . I would become the person who finally freed himself once and for all from of all those negative tapes that told me I was less than my entire life. I finally was going to be the Dan that I yearned to be. I allowed myself to feel hope again and believe that things were finally going to be looking up. After all, surely I had endured more than one person should in an entire lifetime. Once again, I was proven wrong!

One week before my release to a 30 day half-way house experience, on March 7, 2005, I was called down to the medical office to be informed that an HIV test, that I had been given nearly four months before, had come back positive. I was not prepared to hear this at all after all that time had passed since testing. I can still remember the surreal feeling of everything turning black and nearly fainting. All I could think was that I was going to die. I finally was getting what I truly deserved. The very next day I was summoned for lab work so they could determine how far along this disease had progressed. It was also going to be the very first time I experienced the fear, stigma and prejudice surrounding this virus that every other person living with it has encountered at one point or another. The nurse adamantly refused to draw my blood or even examine me. Although she was given instructions in the order to do both, she had them take me out of the office. Here was a medically trained person, with knowledge of the disease, who reinforced my feeling that I was tainted and worthless. Shipped off to a halfway house and denied medical services, I collapsed about two weeks later at my workplace and stopped breathing. I had to be resuscitated and upon regaining consciousness, I was informed that new labs were showing that I had full-blown AIDS and PCP pneumonia. According to the doctor and my lab results, I should not even have been alive but for some reason, there I was.

I was eventually released to bed rest after a few touch and go situations and went to stay with a distant friend who offered to take me in. I spent many hours over the next few months tormented with why, after all the other things I had already gone through, had I been given this diagnosis and worse yet, why had I survived. Having stopped practicing my faith many years ago, I even turned to prayer begging for some enlightenment about what God’s plan for me was and asking for another chance.  While I waited for the answer, I began focusing on everything the doctors told me I needed to do to regain my health. I also began to educate myself on everything I could find about HIV/AIDS and underwent intensive therapy to try to deal with my past and my diagnosis in a way that would help me move forward.

30 years into this pandemic there have been many huge break-throughs in terms of research and treatments. We owe our lives to them. However, sadly, the one thing that does not seem to have changed a great deal is the stigma and prejudice that exists around this disease. It is the ONLY disease of judgment out there that I know of. When we tell someone we have cancer, we are almost always embraced. When we tell those same people we have HIV/AIDS, those embraces, too many times, do not exist. This creates the worst symptom of all, a symptom that fuels my passion for the work I do.  How can one love themselves when many others in this world have judged us unworthy, untouchable, unlovable and even deserving of the diagnosis we received?? Soon, we begin to buy into this and it results in self-loathing, lack of self-care, depression and isolation. Too many I have met in my group felt this and had been broken by it. as a wise woman shared with me at a retreat: “Everything in nature is charged with the glory of God”; these words resonated deeply within me. Everyone and everything had purpose, had worth and was a gift. Looking around at my peers in the room, all who had been afflicted with illness, barely holding on due to poverty and who were struggling with a sense of self-worth were the MOST amazing people I had ever met.

 

Never in any human beings had I seen such strength, beauty and the resiliency of the human spirit. If the outside world were looking in on us at that moment, by simple appearances standards, they would not think this about us. However, those opinions no longer mattered. Seeing ourselves and each other with new eyes, realizing  our  own worth, our ability to love ourselves and to reconnect to our very truths, we were suddenly ‘alive” for the first time in many, many years. It ignited a fire within me that was to transform my life. I could look into the mirror and for the first time in nearly 40 years, know that my truth was worthy of love and that I loved myself fully. AIDS did not win this battle, yet has become the greatest blessing in my life. When I say this to people, they are often are shocked. Without my entire journey and my diagnosis, I would not have found myself. I know now what is important in life and it’s certainly NOT appearances. While by appearances I am not wealthy or famous, I am rich in spirit and in love. I would not trade places with anyone in the world.

Dave's AIDS Ride

This post of an excerpt from an article that was previously published in April 2002, in European AIDS Ride News.

Tell us about your first AIDS Ride.

During the first 50 miles of that first Ride, I cycled behind a Positive Pedaler – and I cried the whole time. I realized that I was only out about my status with select people, even though I did public speaking about HIV/AIDS to schools. I knew I didn’t want to send the message that I was proud because I was HIV-positive, but rather that I’m proud of who I am. And being HIV-positive is a part of that.

What have you learned about living with HIV, especially after two decades.

I’ve learned to listen to and read my body. When I’m tired, for example, I know I need more iron, so I eat foods rich in that. I treat myself with naturopathic methods and have a holistic approach. I’ve become a vegetarian, I don’t drink or smoke, and I exercise – cycling gives me plenty- along with regular strength training. I did take AZT for three years, but I felt it was tearing my body down. I think medications are important to prolong lives, however, and I will take them if they are indicated – but not until that point would come.

Tell us about John, your lover who died from AIDS.

He died in 1990 at the age of 40. We were together for ten years. John was very high-energy workout kind of guy. He loved life, and he loved to spoil his kids – he had two daughters. I’ve kept on a stepfather ever since. I try to fill the gap where he left off. After he died I created an organization that helps families navigate the medical system so they won’t have the same hassles we did. That operated until the mid-1990’s.

Got a Ribbon?

This post was provided by Pastor Andrena Ingram. You can find the original version of this post and more at her website, http://www.andrenaingram.org/.

 

Here we go again: World AIDS Day 2012, coming right up! Time to dig those ribbons out of your drawers and closets and jewelry boxes! Don't have one? Not to worry, wherever you decide to celebrate WAD, I'm sure they'll have some ribbons. Just make sure you save them this time ... so this time next year, you'll be ready!

 

I've lived through 23 years of World AIDS Days! I was diagnosed that many years ago, and yes, I am still here. It took a few years to get comfortable with the diagnosis, a few years to get past the stigma I initially placed upon myself, a few years to get past the stigma placed upon me by others.

As you can see from this picture taken in Toronto, Canada, in 2006 at the International AIDS Conference, it was at this event that I began coming out, yelling and making noise, where I confronted my own stigma, and found support in the 20-some-odd thousand other positive people at the event. It was monumental!

I am past the stigma, when it comes to my own personal HIV.

However, I am NOT past the stigma others are going through. I am NOT past the stigma which keeps people living in shame, secrecy and fear.

I made a promise at this conference that I would begin speaking out, and do everything I could to raise awareness about this disease, particularly when it comes to breaking down the walls of stigma.

I break down the walls of stigma, shame and silence, one face at a time. My face particularly "affects" some persons, because I am a religious leader.

I am an ordained Lutheran pastor, living openly, unashamedly and POSITIVELY with HIV. I am an activist in the HIV arena, and "God's change agent" ... putting my face in the mix, to humanize this disease, so that others who are living in fear, shame and secrecy may come to know that you can live with this disease!

Are you still keeping the promise???

Many have traveled this road before us, many have ACTed UP in the streets, have taken their fight to the lawns of the White House. Have DIED, fighting to the very end. It has been 30 years, and while major medicinal breakthroughs have been made ... there is still much work to be done. Like a cure!

I am grateful for my life. I look good and most days I feel good. But you are looking at me from the outside. Inside, I don't always feel that great. Fatigue takes its toll on me. I talk, and I talk. I share and I share. But there are a few things that still bother me:

The church bothers me. I am not talking about the churches that are doing what they need to do for their congregants, but for the community at large, especially for those who are NOT churched in the traditional manner.

I take issue with houses of God that pass moral judgment on those living with HIV.
I take issue with pastors who do not know that one of their members has been living and died from complications due to advanced HIV, because the parishioner was afraid to tell, for fear of being shunned.
I take issue with houses of God that talk about repentance of sins in the midst of someone's struggling to find their way back to the God who knows all, and forgives all.
I take issue with houses of God that wear rubber gloves to anoint the head of someone living with HIV.
I take issue with congregations who treat someone with HIV any differently than anyone else.
I take issue with churches who condemn the sexual orientation of another.
I take issue with those who are NOT living with this disease, but who are sitting at the tables and doing all the talking and decision-making.

And here's a new one: people in 12 step programs, talking about and judging and spreading rumors about folks with HIV! In the rooms! A space where you are supposed to feel safe -- what you hear here, when you leave here, let it stay here (one of the principal tenets). To say I am appalled is an understatement!

"Let he who is without sin, cast the first stone" -- John 8:7 (I know I can't cast that stone. I am not without sin.)

And so, here we are 30 years later. Getting ready to go into another World AIDS Day. This one is themed "Getting to Zero."

I pray the faith leaders* can get to zero, when it comes to how we are being treated. I pray the faith leaders can get to zero, when it comes to placing blame and shame. I pray the faith leaders can get to zero, when it comes to pontificating and throwing theology around.

We who are living with HIV and "advanced" HIV have our own HIV-ology: We are tired of being nailed to the cross, we are tired of being "poked in the side," we are tired of the crowd screaming at us ... It's time for our resurrection back into society as whole people.

And another thing: I'm tired of the ribbons. We see them every couple of months, depending upon the demographic we are praying for. The ribbons come out from wherever they have been put away the previous year, they are pinned on our lapels or robes, we attend an HIV service, bow our heads and "feel for the HIV community" ... When they get home they take their ribbons off ... and put them away for next year.

Don't get me wrong, World AIDS Day has its place, but dang! Isn't 24 years of World AIDS Day Services long enough? Isn't 30 years of this disease long enough?

With the advent of new medications, I feel the passion has gone out of the fight against HIV. People feel like it is a manageable disease these days, and it may well be so. I know I am managing. I am living. What I don't know, and what people who are not living with this disease do not know or understand, is the havoc the medications wreak on our insides. Medication is keeping us alive. But you know what? I am tired of taking pills ... and I am tired of wearing ribbons ... and I am tired of World AIDS Day!

So ... what will you be doing, this World AIDS Day?

I am sure I'll be speaking somewhere. Again.

... Gotta find my ribbon. I know it's here somewhere. ... Wait a minute. I AM the ribbon!

Celebrating Philadelphia's HIV Community

The HIV community is vibrant and varied.  It includes advocates, researchers, social workers, innovators, survivors, leaders, activists, protectors and defenders.  They face seemingly insurmountable challenges with courage and determination.  Most of them are never acknowledged for their work.  The Poz 100 addresses this on a national level.

In recognition of World AIDS Day, we would like to celebrate our area’s HIV community.  We are collecting reflections, interviews, and stories from the people that made history and will shape our future.  Your voice is important, and we want to hear from you.  You can participate by submitting an original blog post to hivphillywebmaster@gmail.com or completing a brief online interview questionnaire at http://tinyurl.com/d37dbzs.  Share a link to the blog with your friends and colleagues, and click “join this site” at the top right of this page.

We will post at least one new story each day for the month of December.  We’ve already got four awesome and inspiring posts lined up from people who prevailed when the world didn’t expect them to survive. 

Come back tomorrow to see our first post from someone who really practices what she preaches.

Map of Philadelphia HIV/AIDS Epidemic

The map shows the number of HIV cases by census tract (division of population used by the US Census Bureau).  This map is a part of the 2011 geographical risk analysis, which examined what community factors (crime, death rates, income, etc.) were associated with areas of high concentration of HIV/AIDS.  This analysis was done to determine where HIV prevention and care services are most needed. An explanation follows the map.

Map 1:  Number of Persons Living with HIV/AIDS in Philadelphia by Census Tracts and Neighborhoods

The strongest and most significant predictors of people living with HIV/AIDS (PLWHA) rates in Philadelphia (in order of significance) are:

1.       Neighborhood instability (areas with high numbers of demolished buildings or vacant properties, or with homes with discontinued water service)

2.       Crime rates related to drugs and/or sex;

3.       Socio-economic status (SES); and

4.       Personal crime rate (robberies and aggravated assaults)

Based on our analysis, high risk census tracts in Philadelphia are, therefore, predominately unstable, high crime, and low socio-economic status (SES) areas of the city.  Sixty-six census tracts in Philadelphia, or 17% of all tracts, are identified as high risk and high PLWHA areas, and ten census tracts are identified as very high risk with correspondingly high PLWHA rates. 

The neighborhood which contains the highest number of these tracts, and so is considered at the highest risk in the City, is Sharswood-Stanton in Lower North Philadelphia.  This is followed by Millcreek-Parkside, Strawberry Mansion, Poplar-Temple, Nicetown-Tioga and Hunting Park-Fairhill. 

There are, however, a number of census tracts that do not follow the general patterns found; some areas may have low rates of people living with HIV/AIDS (PLWHA) while they appear to be areas of high risk, while others may have high PLWHA rates in otherwise fairly low risk areas of the city.  Areas with high PLWHA and low risk are usually characterized by middle to upper-level socio-economic status with fewer Black residents, lower crime and relatively stable census tracts.  Most of these areas are near, or in, Center City. Factors unique to Center City make this area an outlier in terms of the risk analysis, while characterized with a high rate of PLWHA. 

Areas with low rates of PLWHA but very high risk indicators include areas within Paschall-Kingsessing, Upper-Kensington and Haddington-Overbrook neighborhoods. These tracts have very high risk levels, but lower PLWHA rates than other tracts with the same risk levels.  This analysis could not determine any neighborhood-level protective factors that contributed to lower rates of PLWHA but perhaps future research might provide some insight.

So what do you think?

Why do you think the map looks like it does?  Why is HIV concentrated in high risk communities?  Why is Center City unusual, in that there are high rates of people living with HIV/AIDS but the census tracts are considered ‘low risk’? Does the map match your experiences or observations?

We want to hear from you.  Share your knowledge and experiences to give context and meaning to this map.