An Inteview with an "Inquiring Mind"

This post is based on an online interview form submitted by "Inquiring Mind" on December 12, 2012.  It was updated on January 15, 2013.

Tell us about yourself.  I'm an avid reader and writer (e.g., poetry, short stories, world events...). I find joy in the arts (e.g., drawing, sewing, museums...), swimming, and rescuing strays. I owed to rescue animals: a Chihuahua/terrier and a Tuxedo cat. I refer to them as trouble-free family members.

What made you get involved in the HIV/AIDS community?  Sharing and learning raises awareness when there is so much information.

If you could change one HIV policy or implement a new policy, what would it be?  I'd make Human Sexuality Education mandatory in middle and high schools. The person(s) teaching would have to be certified to speak on various issues. Guest speakers should be made available to discuss topics that the instructor is not equipped to handle. Some people believe that a child's guardian should handle human sexuality topics, however, some guardians fighter lack knowledge and think the topic is taboo. If this is the case, the child needs other resources to pose questions.
Who do you look up to or admire?   I admire animals. They are intuitive and peaceful beings. If you pay close attention to them, they have so much to offer; they are the gurus to serenity.  As for people: George Clooney, Alicia Keys, The Clintons, Bono... and many other celebrities/politicians that fight for causes for selfless reasons.

What do you think is the biggest challenge facing people living with HIV/AIDS?  There's so much misinformation circulating about HIV/AIDS [and] the general public tends to believe what they hear without investigating. Moreover, since there are so many correlations between HIV and other diseases (diabetes, cancer, LUPUS, MS…) that there should be a focus for discussion. Peripheral neuropathy, vitamin and mineral deficiencies, and blood counts to name a few have similarities among people living with these diseases. How are they similar? How do they cope?

If you found out your friend was recently diagnosed with HIV, what would you tell him/her?  Learn all that you can from legitimate resources: doctors, trade magazines (e.g., POZ, PA, Colors, Plus…), websites (e.g., WebMD, AIDS.gov…) , HIV organizations... Last, use your best judgment when making decisions. If it sounds questionable, then question it.

This post is part of our World AIDS Day blog series celebrating the Philadelphia-area HIV/AIDS community. To share your own story, please submit an original post to HIVPhillyWebmaster@gmail.com or fill out an interview form.

"Finding Myself," by Evelyn

Thanks again to Adam for submitting these amazing digital story.  Next we have another video from the "Having it Heard" project. This is Evelyn's story, "Finding Myself."

This post is part of our World AIDS Day blog series celebrating the Philadelphia-area HIV/AIDS community. To share your own story, please submit an original post to HIVPhillyWebmaster@gmail.com or fill out an interview form.

Happy Holidays from Ms. Mary, OHP Staff

I live in West Philadelphia, and I am 68 years old.  I have worked at the Office of HIV Planning for at least fifteen years.  I enjoy reading and spending time with my children and grandchildren.  They bring such joy to my life. 

I have come to know some very interesting, intelligent, and special people while employed at this office – many of whom are no longer walking on the earth but will always be remembered in spirit.   I came in contact with this organization while I was working at the campus ministry at Temple University.  The director of what was known as the Philadelphia EMA HIV Commission needed someone that she thought was trustworthy to keep track of billing, reimbursements of payments and other clerical duties, and I was recommended for the position. 

Needless to say I am still here, but the name has changed to the Office of HIV Planning.  We had a very small staff at the time, and therefore I was responsible for taking minutes for various committees, as well as taking care of meeting logistics, such as ordering food, giving out tokens, and making telephone calls to make sure everyone knew the meeting dates and times.   As I became more and more involved with my role in the process, I became closer and closer to the participants that I came in contact with.  My life will always be affected by the people I have met through this office.   They have been a blessing to me in ways I cannot explain. Many of them only know me as Ms. Mary.  I still pass out tokens at meetings and make sure all reimbursements are processed in a timely manner, but I no longer take minutes.     

I also get to hear about what's going on in many of the lives of those attending meetings on a more personal level.  Often I hear about doctors’ visits and ailments.  Sometimes people will just stop by my desk to ask for prayers for something they or someone else may be going through.  I think highly of many of the people that continually give their lives to making a difference in this epidemic - especially the Dale Grundys, the Diane McFaddens, the Rick Britts, and others that worked endlessly and tirelessly to make changes to policies they believed were not in the best interest of those living with HIV/AIDS.  They have gone on, but there are new workers to take their place.  Whenever I get up in the morning not wanting to get up to come to work, I think about the challenges these friends and others experience on a day to day basis.  It gives me strength.

If there was one policy that I would like to see implemented, it would be partner notification.  Having been married to a gay male before the epidemic was as prevalent as it is today, I feel that I would have wanted to know if he was positive.  At least I would have had a choice to make.  However, he would not admit that he was gay, so why would he have admitted he was positive.  I am not passing judgments on anyone, but feel that if one has to take responsibility for their actions, they may become less likely to show precocious behavior when they are infected with HIV/AIDS.     

I would like for anyone that may have the opportunity read this to know that I am sincere about my compassion for humanity, whether it is someone with HIV/AIDS, a homeless person on the street, or someone else that has come in contact with the challenges of today's society.  I have also had many, many challenges in my life.  God has been merciful to me and I feel blessed.    

This post is part of our World AIDS Day blog series celebrating the Philadelphia-area HIV/AIDS community. 

"Another Chance," by Ralph Moses

We've been loving the opportunity to share the digital stories submitted by Adam.  Next we have another video from the "Having it Heard" project. This is Ralph's digital story, "Another Chance."

This post is part of our World AIDS Day blog series celebrating the Philadelphia-area HIV/AIDS community. To share your own story, please submit an original post to HIVPhillyWebmaster@gmail.com or fill out an interview form.

An Interview with Michael

This post is based on an online interview form submitted by Michael on December 11, 2012.

 

 

 

Tell us about yourself.  My name is Michael and I live in the city of Philadelphia. I am 54 years old and appreciate the great family that God has given me. At this point in my life, I am enjoying being retired. Most of my time is spent giving back to society. At this present time, I volunteer for many agencies in the Philadelphia that help individuals with prevention, awareness, and education around HIV/AIDS. I have many hobbies and interests, such as: trusting and believing in God, reading, traveling, serving the community, helping those in need, writing poetry, tutoring, and much more.

What made you get involved in the HIV/AIDS community?  I got involved in the HIV/AIDS community when I tested positive for the virus. First, I had to educate myself before giving back to the community. My counseling message to the affected & infected population is to encourage male or female condom use during sexual activity, emphasize the importance of being adherent if taking HIV medications, discuss importance of STD screenings and treatment, and partner testing & treatment, emphasize importance of adhering to ART to reduce viral load and increase CD4 count & being open to having a honest conversation around knowing your partner history and using protection every time.

If you could change one HIV policy or implement a new policy, what would it be?  If I could change one HIV policy or implement a new policy, it would be to let the consumers and stakeholders know that HIV is primarily a sexually transmitted infection. Development of a supportive environment requires national and community wide discussion of relationships, sex, and sexuality, risk, risk setting, risk behaviors, and cultural practices that may increase the likelihood of HIV transmission. This policy change will help with education, prevention, and awareness globally.

Who do you look up to or admire?  The person I admire the most is God. He gives me grace and new mercy every morning.

What do you think is the biggest challenge facing people living with HIV/AIDS?  The biggest challenge facing people living with HIV/AIDS is staying linked to care, and the stigma around the virus.

If you found out your friend was recently diagnosed with HIV, what would you tell him/her?  If I found out that one of my friends tested HIV positive, I would tell them it is no longer a death sentence. You can live a long healthy life through treatment.



This post is part of our World AIDS Day blog series celebrating the Philadelphia-area HIV/AIDS community. To share your own story, please submit an original post to HIVPhillyWebmaster@gmail.com or fill out an interview form.

"How I Found My Way Back," by Marcie

Our next entry is another video from the "Having it Heard" project. This is Marcie's digital story, "How I Found My Way Back."

This post is part of our World AIDS Day blog series celebrating the Philadelphia-area HIV/AIDS community. To share your own story, please submit an original post to HIVPhillyWebmaster@gmail.com or fill out an interview form.

An Interview with Waheedah Shabazz-El

This post is based on an online interview form submitted by Waheedah Shabazz-El on December 9, 2012.

Tell us about yourself.  I am a native Philadelphia Resident, a retired Postal Worker and a Kick-Ass AIDS Activist. That's what my friends tell me. I enjoy empowering my community with capacity building, skills sharing and popular education centered in Human Rights. I am a Founding Advisory Member of the U.S. Positive Women's Network and I coordinate the Philadelphia Chapter. I love travelling to different parts of the country empowering women living with HIV and at risk for HIV to stand up and ask to be "Counted IN" - Counted into Prevention, Leadership and the Resources.  My proudest moments include speaking at the grave of Dr. and Coretta Scott-King on World AIDS Day 2007 and meeting President Barack Obama in June 2010.

 
What made you get involved in the HIV/AIDS community?  My own AIDS Diagnosis is what got me involved. I wanted to live, so I had to learn how to do that. Because of the stigma that is associated with HIV, I learned early on that in order to live, I had to NOT be silent, but be visible and vigilant.
 

If you could change one HIV policy or implement a new policy, what would it be?  Count Women and Girls into the Plan and Research for HIV Prevention. In the US women make up nearly a third of all new infections.  Count Women In. Prioritize women in a risk category of their own. Not women in jail or women who do drugs or even women with children.  Count All WOMEN IN.  Whether they are of child bearing age or experiencing menopause. Women's risks for acquiring HIV have not been clearly defined. Currently women only have (1) female initiated method (device) to protect them from HIV. That is the female condom. That, by the way, is nowhere as easily accessible as condoms are for men. Count Women In and put prevention tools in our hands.

Who do you look up to or admire?   Julie Davids, former Executive Director of CHAMP. 

What do you think is the biggest challenge facing people living with HIV/AIDS?  Internal Stigma is a huge challenge for PWAs (people living with AIDS). When a person does not realize that vulnerability for HIV can be [a result of] the geographical location where they live. HIV is only preventable in an ideal world, where poverty, intimate partner violence and social and economic disparities are eliminated. People should not blame themselves for contracting HIV when structural systemic policies make them more vulnerable, no matter how hard the individual tries to protect themselves.

If you found out your friend was recently diagnosed with HIV, what would you tell him/her?  HIV is not the end of the world. You can live, you can love and you can be loved.  But first you gotta put away the hammer. Don't beat yourself up.  Knowledge is power. Learn how to live and love in spite of HIV, in the face of HIV so you can teach those coming behind you how to do the same. I would ask them to allow me to mentor them, as someone did for me.


This post is part of our World AIDS Day blog series celebrating the Philadelphia-area HIV/AIDS community. To share your own story, please submit an original post to HIVPhillyWebmaster@gmail.com or fill out an interview form.

"For Nothin' In the World," by Charles

For today's post, we have another digital story submitted to us by Adam.  It was created as part of a digital storytelling workshop at the AIDS Library.

This post is part of our World AIDS Day blog series celebrating the Philadelphia area's HIV/AIDS community. To share your own story, please submit an original post to HIVPhillyWebmaster@gmail.com or fill out an interview form.

"It Started Over Hamburgers," by Jennifer Chapman

This post is based on one written by Prevention Planning Group (PPG) co-chair Jennifer Chapman in 2009.

It started over hamburgers.

He was lying in a hospital bed.  Starving, yet wasted, and wondering why his body had turned on him.  At 95 pounds this once vibrant and oft irreverent man was craving something he knew he could no longer swallow let alone keep down.  He fought in a war, for God’s sake, but couldn’t defeat a hamburger?

Me?  I was an always-teetering-on-the-brink-of-cheating-vegetarian whose mouth started watering the minute he mentioned hamburgers.  At a healthy 95 pounds I perched on the side of his hospital bed while we dreamed up combinations of condiments and toppings to go on our imaginary feast of hamburgers and french fries.

And that’s when we finally discovered what we had in common.

On the surface we couldn’t have been any different.  Really.  Not even if we tried.  On paper (or even in a photograph) we were polar opposites.  Chase was a middle-aged, former heroin-addicted, city dwelling veteran who live a hard paycheck-to-paycheck life.  He had first-hand experience with racism & race riots, poverty and disenfranchisement.  On the flip side, I was a recent college graduate twice over from a quiet suburban neighborhood and while my family never had extra money to throw around, I never got the idea that we were lacking for anything.

So how did we end up sitting together on a hospital bed talking about hamburgers and hoping against all hope that someone would figure out a way to cure AIDS before it was too late?

**

In 1995, after graduating college, a friend of a friend helped me land a job at a state-run public health clinic.  Trying to figure out how I was ever going to combine my interests in medicine with the social/behavioral sciences and find a job that contained adventure, a chance to hear other people’s  stories and most importantly, didn’t involved sitting behind a desk for 8 hours…this job, although gritty and unglamorous and sometimes downright dangerous, seemed perfect for me.  My actual job was to go out into the community and locate people who had been exposed to a variety of communicable diseases and bring them back into the clinic for testing and treatment.  And while I could write a novel about those experiences it this next one that has kept me working in this field for the last decade and a half.

When I proudly walked in to work one morning and announced to my co-workers that I had been matched up with an “AIDS Buddy” that I was meeting for the first time after work, I didn’t expect the lukewarm and rather forced enthusiasm that came from everyone.  Comments like “why wouldn’t you want to leave this life on your desk at 5:00 and go home and pretend it doesn’t exist?” coming from my boss was quite shocking and a bit demoralizing.  Seriously?!?  We were public health professionals; I couldn’t believe that these people didn’t want to do it.  How could you leave an incurable epidemic on your desk at 5:00 and come back to it in the morning?  How could you turn your back on someone that everyone else already had?  It was 1995.  The fight against HIV/AIDS was still young.  Sitting on that hospital bed while talking about hamburgers there were literally less than a handful of available treatment options, none of which were going to do any good for my buddy.  And my boss and coworkers wanted to go home at night and forget it existed until 9:00 the next morning?

Undeterred, I rang Chase’s doorbell that evening, waiting nervously to meet my AIDS buddy.  Panicky, in part, because I had made about ten wrong turns on my way to his house but mainly because the volunteer coordinator had made an exception to his “they have to have a prognosis of at least three months” rule to match the two of together.  Together because there was “something” about me and “something” about Chase.  Something indescribable and against all of the rules and something that flew in the face of everything that made sense on paper… yet he wanted the two of us to meet because he thought that we each had something to offer the other.

Shortly after our conversation about hamburgers, my dear friend Chase passed away.  Not before dozens of visits and hundreds of stories and laughs and tears and promises to share holiday meals with his family (that following Thanksgiving was still the best I ever had).  Not before I realized that even if my entire workplace tried to dissuade me from doing something I should try it anyway.  And not before I got to hold his hand and whisper to him that he had fought the good fight and if he was tired and wanted to go, his family said it was okay for him to let go.  Chase taught me that it was okay to talk about subjects that others shied away from, like drug use and racism.  I taught him that not every white girl from the suburbs went to college to land a banker-husband.  We taught each other that it was okay to be scared and admit when you didn’t know what to do and that polar opposites sometimes make the best of friends.  To this day – almost 15 years to the day that my friend died – I still think of the personal and professional lessons that my friendship with Chase taught me.  Including that it’s okay to indulge in a really good hamburger every once in a while.

This post is part of our World AIDS Day blog series celebrating the Philadelphia-area HIV/AIDS community.  To share your own story, please submit an original post to HIVPhillyWebmaster@gmail.com or fill out an interview form.

"Seasons," by Patrick

Our next entry is another video from the "Having it Heard" project.  This is Patrick's digital story, "Seasons."

An Interview with Dawna

This post is based on an online interview form submitted by Dawna on December 7, 2012.

Tell us about yourself.   I'm 45 years old and live in Philadelphia, PA and am HIV+. I am the founder and Executive Director of Positive Voices of Philadelphia, Inc. I have 2 biological children, 1 child that I am the caretaker of, and many children have been fostered through my home. I have 3 brothers and no sisters. I am married to Larry 'Ali' Watson. I love spending time with my family and volunteering in the community. When I am relaxing I watch movies, knit, crochet, sew or do needlepoint. I am also a Muslim and enjoy studying about my Religion.

What made you get involved in the HIV/AIDS community?   My son Joshua J. Edwards, aka Khalil Muhammad (now deceased). He was diagnosed in 1989 with HIV and it happened during my pregnancy. I knew nothing about HIV/AIDS.  Once I found out that my son had it and they gave him only 6 months to live (he lived to be 15 years old), I decided right then and there to learn all I could and become an educator, activist, and advocate for those living and those who have passed.....this was over 20 years ago.

If you could change one HIV policy or implement a new policy, what would it be?   I would implement a policy that makes HIV/AIDS a part of health classes starting in middle school. I think it is very important for the future generation to learn the true facts about HIV/AIDS at an early stage in life due to the fact that they are the ones who are becoming infected more and more and at younger ages.

Who do you look up to or admire?   My son (Joshua), my mother (Rose - now deceased), my daughter and my husband.

What do you think is the biggest challenge facing people living with HIV/AIDS?  Disclosure for fear of people judging them. Stigma is still a very large part of the HIV/AIDS world and people are still afraid to disclose their status and get the support they need including to their family

If you found out your friend was recently diagnosed with HIV, what would you tell him/her? That I know what they are going through because I went through some of the same feelings. Then I would give them a hug tell them I love them and that I will help them through it. I will let them know that it is not a death sentence and they can live for years. I would then tell them that they should get into medical care and begin medicine as soon as possible and then work on getting a case manager. I would reassure them that I would be with them every step of the way and that they would not have to travel this road alone.

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

"Keep Dreaming," by Allison

Next, we have another digital story sent to us by Adam.  Here's the description:

"Allison thought that HIV would never happen to her. As a proud mother of three and grandmother of four, her HIV-diagnosis really scared her at first. She has since realized that HIV cannot stop her from following her dreams. She feels that it is important to go out and speak out about HIV/AIDS, especially since so many people remain scared to do so. Her hope is that more people will show the courage to face HIV and talk about it. She is working toward a society where people can find more support from family and have access to the necessary tools and knowledge they need to lead healthy lives.

She made this digital story as part of Having It Heard, a digital storytelling project for social change. To learn more, please visit havingitheard.org"

An Interview with Nicole Johns, OHP Staff

 

Tell us about yourself.  I am lucky enough to have worked at the Office of HIV Planning for a little over ten years, in a number of different roles. I really enjoy my time with the Positive Committee and other committees, meeting people, learning from them, and trying to help make the HIV health care system be as accessible and comprehensive as possible. My partner, Travis, and I have two little boys who keep us laughing and running. I enjoy crafty things like knitting, and also like to spend time outdoors hiking, biking, and playing with my kids.

What made you get involved in the HIV/AIDS community?  I accidently became a public health practitioner and an advocate for people living with HIV/AIDS. I started working at the Office of HIV Planning in 2002 taking meeting minutes. After I learned the jargon and got to know the people, I was hooked. I enjoy the ever-changing landscape of HIV/AIDS- whether policy, medical breakthroughs or social science - it's always new. I am passionate about ending stigma and eventually ending AIDS. I think my personal skills and strengths make me best suited for the policy/governmental side of the fight, but who knows where this journey will lead.

I also have some personal cause for this fight. A close friend and a family member have been living with HIV for years, thriving and helping others. They are a big source of inspiration and energy when I get frustrated or feel burned out.

If you could change one HIV policy or implement a new policy, what would it be?  I would implement universal single-payer health care for all Americans. This isn't an HIV-only policy, but it is one that would dramatically increase the numbers of insured HIV-positive folks, as well as help millions of Americans have access to health care and prevention services. Until all people have equal access to health care, we do not have equality in America.

Who do you look up to or admire?  I admire my friends who live generous and full lives. I have a friend who started the Student Run Emergency Housing Unit of Philadelphia. I have another friend who opened her family's home to two young men who had nowhere else to go. I have other friends who are social workers and teachers who give so much of themselves. There are so many sources of inspiration in my life. For this, I am blessed.

What do you think is the biggest challenge facing people living with HIV/AIDS?  Stigma. Stigma is at the root to so many challenges facing people living with HIV/AIDS. Until we end stigma we will never End AIDS.

If you found out your friend was recently diagnosed with HIV, what would you tell him/her?  'I love you and you are going to be fine.' I would do my best to help my friend get a great doctor and find the supports she needed. But most importantly, I would reassure her that I was there for her and I would help her in whatever ways I could. And if she wanted to hear it, I could share with her some stories about all the awesome people I know who are living good happy lives , who also happen to have HIV.

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

"People Like Me," by Roy

Here is another video sent to us by Adam.  This is Roy's story, entitled "People Like Me."

 

 



"Smiley," by Adam

Adam Bortner creates digital stories.  We haven't had the pleasure of meeting him (yet - come visit us!), but he has done great work with videos.  We'll be sharing more of the stories that Adam helped to tell throughout the month, but we'll start with his.

Adam wrote:

I have worked over the past three years directly with people living with HIV/AIDS in the Philadelphia to document their stories and elevate their voices. We have made digital stories together (sort of like movies, but the core is someone's recorded life story that is accompanied by photographs/images and sometimes music). Some of the people who made the stories wanted to share them with the world and have uploaded them to YouTube. They are very powerful.
 

Adam also sent us the story that got him into this.  We are really pleased and honored to be able to share it with you.

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!