Collected here are the voices of African-American board and staff from the National Association of People with AIDS (NAPWA) on National Black HIV/AIDS Awareness Day 2007:


Frank J. Oldham, Jr.
Executive Director   
I believe it essential, on National Black AIDS Awareness Day, for us totell our individual stories about how we have survived the AIDS crisisin America.

I have been HIV positive for over 15 years, probably more. While living in Chelsea in New York City in the mid-1980s and early 1990s, I saw all but two of my joyous circle of gay friends die. My gay family was black, white, Asian, and Latino. They died often covered with Kaposi’s sarcoma, or emaciated from wasting syndrome, or suffocating from pneumocystis carinii pneumonia, or from any of the infections which used the opportunity of a weakened immune system to destroy the body and finally break the spirit. It was a time when death was the only relief.

To the public, and through the media, AIDS was a disease of white gay men, but the reality was that many black men had AIDS and were dying; it was just that no one called it AIDS. No one wanted their sons, fathers or brothers to die of the “gay disease”. But we died nonetheless; and in 2007 we are still dying secretly and no one wants to say why.

The salvation for me (now at the age of 58) is that since I came out at 17, I have always been proud of being both black and gay. One of my own personal myths is that I have survived through pure “will”; and by never losing my joy in being an openly gay black man. Like all black men who grew up through poverty to become struggling working-class—barely middle-class—I know what it’s like to worry about the health of ones parents and grandparents, finding a job and making your rent payment—more than your HIV illness.  And like every gay man who lived through the peak of the AIDS crisis, I have thrown away one address book after another because each listed too many deaths of friends, lovers and “hot dates.”

I’m proud to have survived racism and homophobia and AIDS. Any of the three of these can take your life in America. That’s why we must never let our country forget that 750,000 Americans have died from AIDS and that most were gay men and black people. This is why I’m not afraid to come out as a PLWA and as gay man. This is why I will continue to fight for access to health care and civil rights for all us.  The National Association of People with AIDS leads this fight for all PLWAs in America. For us, every day is National Black AIDS Awareness Day.
The National Association of People with AIDS leads this fight for all PLWAs in America. For us, every day is National Black AIDS Awareness Day.    
    
 
Vanessa Johnson
Deputy Executive Director   
I believe that the greatest silent killer of women is our own paralyzing silence conceived in fear and shrouded in terror.   
   
We are called mother, daughter, sister, auntie, wife, friend, and partner but among the many roles that we as women of African descent are revered for is grandmother. Unfortunately, and not by our own choice, many women will not live this experience; for many of us who are grandmothers, our experience will be tragically shortened by one of the many silent killers that is plaguing our community. AIDS is only one of them. However, I believe that the greatest silent killer of women is our own paralyzing silence conceived in fear and shrouded in terror.

This silence is understandable for it is unthinkable that our loving someone deeply and strongly would lead to illness and death. But think we must, if we are going to save our own lives and the lives our families and communities. Our children need us. Our men need us. We women need each other.

So face whatever it is you have to face and get tested for HIV. If you test positive for HIV, go see a doctor. If you need someone to go with you, call one of the AIDS-service organizations in your area or call the National Association of People with AIDS (NAPWA), a lifeline for people living with HIV/AIDS in this country.

I know this because I am a mother, daughter, sister, auntie, and grandmother alive today and living with HIV. I am an African-American woman, diagnosed with HIV in 1990. I tell you all this because I would not be here today if I had remained silent.


Gary Richardson
Board Member   
I believe housing is healthcare.  It is the foundation from whichpeople can start to re-build their lives in a safe and secure place.   

What do I say to the African-American community on a national day of AIDS awareness?

I say take the test and find out your HIV status. It means the difference between being healthy and having a long and productive life or finding out you have end stage AIDS. Unfortunately, too many African American find out their status in an emergency room for too many reasons.

There are so many issues that I would like to address. But first, I have to ask the question of who am I and how did I get here. Here being a place where I feel good about myself as a person living with HIV, HIV-positive for over 17 years and having over 1000 T-cells. I go to the doctor and take my meds religiously.

This is who I am: I’m a black man. I am a gay black man. I am a high school dropout. I am a United States Navy Veteran. I am a person living with a disability. I am a recovering alcohol addict. I am a person living with HIV. I have experienced chronic homelessness for years living from pillar to post. I have lived many years under the national poverty level on Social-Security disability. I am a native of Cleveland, Ohio and my community continues to experience high levels of poverty.

Today, I am also proud to say I am a social worker with a masters degree. So, how did I get here? I guess I got rid of all the rejection, fear and stigma and I dealt with it all one day at a time.

The difference came when I received subsidized housing. I believe housing is healthcare.  It is the foundation from which people can start to re-build their lives in a safe and secure place.

It is at this point, when I received housing, that I decided I had to deal with it all: my sexuality, being gay, having HIV, my addiction and wanting to help make a difference in my life and my community. It is at this point when I started to dream again and my dream was to become a social worker.  That dream is now my reality. 

   
Kali Lindsey
Program Manager   
Efforts to impact the HIV/AIDS epidemic domestically cannot succeedwithout considerable attention to the special characteristics and needsof vulnerable populations and how they present themselves in terms ofprevention and access.  

African Americans manifest a higher preference for residing in integrated areas than any other group. [Douglas S. Massey, 2004]

Growing up in the city of Detroit where the majority of the faces I saw were African American, I experienced the effects of racial residential segregation on a daily basis.  It was, however, important and comfortable for us to remain in that community because the majority of us held a similar identity related to history and the struggle to persevere. In spite of the perpetual exodus of businesses that offered decent pay and benefits, access to quality services and amenities, and the plague of inconsistent and unreliable transportation many black people still preferred living in the city.

I was lucky enough to be inoculated from the imposition of inadequate services having benefited from a middle-class upbringing.  Every trip outside of the city limits for quality healthcare and other services was an example of racial residential segregation.  I was oblivious to this being a barrier to access in my youth.  Without the luxury of reliable transportation, many people are forced to make do with services that are ill-prepared and incapable of meeting the needs of the community.

After being diagnosed with HIV in 2003 and having to drive again in the suburbs for my HIV care, I accepted it as the norm.  It didn’t seem like a problem to me until I began working for a community-based organization that worked with HIV-positive people from all walks of life.  After witnessing the standard of care that some individuals were left with no choice but to endure due to lack of insurance, poverty, and lack of transportation, made me sincerely appreciate the options I had.

Efforts to impact the HIV/AIDS epidemic domestically cannot succeed without considerable attention to the special characteristics and needs of vulnerable populations and how they present themselves in terms of prevention and access.  My greatest desire as we commemorate another Black AIDS Awareness day is for the vulnerability and the threat that the community is experiencing to become a focus and a priority to endow the community with what is it needs to get control of HIV and AIDS.

 
Larry Bryant
Board Member  
We need to make people see that HIV is not just a Black problem, a poorproblem, a Gay problem, a sex problem, or a drug problem, but a humanproblem.

I have been involved in the field of HIV/AIDS as a volunteer or employee for more than 17 years. HIV has been in me for more than 21 years. I was introduced to AIDS or GRID (the term HIV positive wasn’t yet used widely) as a freshman football player at Norfolk State University, a historically Black university in southeastern Virginia.

As a straight, college-educated Black man, never incarcerated and drug-free, it was difficult for me to accept my own diagnosis. Even today, it is difficult for America to see HIV in someone like me.

In 1986, near the beginning of what became an epidemic in Black communities as well as across the country, a pair of brothers in Florida had their house burned down because the suspicion of infection. In 2005, a child was “dismissed” from a Christian school in southern Alabama because her father was diagnosed HIV positive. In 2007, people would still choose to die of AIDS under their beds behind locked doors than to live one day, one minute, as an HIV-positive person.

Stigma and discrimination towards HIV-positive people have to be confronted and attacked first by those living with the disease. Encouragement leads to empowerment leads to enlightenment. However, any kind of movement or action towards the end of the HIV/AIDS epidemic and the stigma and fear associated with it based solely within the HIV/AIDS community is doomed to fail.

Those of us who are HIV-positive need to take the steps towards creating a dialogue that would take our issues across lines of race, gender, and socio-economic status. We need to make people see that HIV is not just a Black problem, a poorproblem, a Gay problem, a sex problem, or a drug problem, but a humanproblem. HIV/AIDS is a problem for all of humanity. HIV/AIDS and thestigma and fear that paralyze us against it are something that needs toconfronted and attacked by all elements of humanity.


Steve Bailous
Director of Community Affairs   
I’m one of the 46% of urban Black MSM who are infected with HIV.
How did I become a statistic?   
   
It was 1988; my partner, Jan, and I were the model couple, celebrating 10 years together. We thought we were proving that gay-male relationships can work. We both had jobs, memberships at the health club, lots of friends, and a new car. Life was good. We thought we had a fairly normal life, at least as normal as any gay couple can have. I never believed that our love was immoral, anti-women or anti- black. AIDS changed everything! Nothing about our lives was normal.

My partner was diagnosed with PCP (pneumocystis carinii pneumonia). He spent so much time in and out of the hospital over the next three years, cheating death time and time again that the hospital staff thought I worked there too.

When he wasn’t in the hospital, our living room was his hospital room where home health aids could care for him while I worked. I took care of him evenings and weekends. I suspected that I was HIV-positive too; I had his doctor test me secretly to confirm it.

Over time, we closed ourselves off from our friends. We hated our new status as the couple who had “it.” Much later, we found out that we were only the first. Homophobia and AIDS stigma forced us to shut the world out so we could reserve all our energy to survive and keep our dignity.

When my beloved partner passed, I put away his hospital bed and opened our home to all our friends and family for the first time in three years. I could finally talk about it; and did they ever have questions! I found out that this wasn’t only happening to me; others were beginning to experience the devastation of AIDS and needed to talk about it too. I realized my dear friend Ortez Alderson and ACT-UP were right when they said, “Silence=Death.”

Fast forward to today. The questions have changed, but they still come. Thanks to advancements in medicine, the responses are much improved. Although I always question my doctor when I’m told some of the medical issues that challenge me are normal.

We still don’t have the ultimate answer.  We do have hope. But it isn’t over.

For Jan and Ortez my partner and friend, I remember and remain. Jan and Ortez were the first AIDS activists I knew.


Angelo James
Executive Assistant   
Truth: I am stronger than any heaven or hell the people of this world may try to throw me in. 

I was born during a time when emergency rooms where brimming with people with rare illnesses: pneumocystis and Kaposi’s sarcoma, to name a couple.  During this time, many doctors and health officials began to notice how these viral terrorists only wreaked havoc on gay men. As a response, the CDC first named this disease GRID, Gay Related Immune Deficiency, which demonized and stigmatized the gay community as carriers of this deadly disease.

20 years after the HIV/AIDS outbreak, I found myself working in a clinic, located in a large city, where many of my patients were HIV positive and traveled several hours to seek medical attention at our facility.  This baffled me.  Why are so many of our patients from these smaller cities in Kentucky migrating hours from their home to seek their medical care with us?

One patient who really helped me understand this bizarre migration was a twenty-something, black man by the name of Jonathan.  Jonathan lived in rural southern Kentucky where everyone knew each other and nearly the entire town could be found at the First Baptist Church at 10 a.m. Sunday mornings.  This was small-town USA.

Jonathan chose to seek his medical management at our clinic because his family excommunicated him in fear of contracting the disease. Due to his illness, many of his friends shunned him because they thought he was gay.  It was all over town that this man was infected and “you better stay away or you’ll catch it too.”
For the two years that I knew Jonathan, who in fact was heterosexual, I saw him go from trying to avoid people judging him to his hiding the fact he was positive.  Jonathan died prior to my discovering my HIV status.

I learned from my experience. Truth: I am HIV positive. Truth: Regardless of how people may condemn me, I will still be HIV positive.  Truth: I am stronger than any heaven or hell the people of this world may try to throw me in. Truth:  I cannot hide from myself.  For me, National Black HIV/AIDS Awareness Day is a reminder to honor the dignity and lives of all the Jonathans that have gone before me and the Angelos that will come after me.
 

Michelle Lopez
Board Secretary   
I refuse to allow my immigrant status be a barrier to my HIV care and treatment.   
   
I am honored to be the secretary of the National Association of People With AIDS Board of Directors. I must admit that my level of concern is at its highest due to the alarming rise in the number of black women being diagnosed with HIV/AIDS. I am living with this virus for the past seventeen years and it’s a constant struggle, as an immigrant, as a mother of an infected daughter. I am a proud immigrant from Trinidad and I refuse to allow my immigrant status be a barrier to my HIV care and treatment. I have chosen to become involved in HIV/AIDS care to advocate for the best quality of care for my daughter, my community and myself. Due to this important aspect of our lives, I now serve as a consumer representative to the National Quality of Care Center. I know as an infected consumer, our survival depends on access and the best quality of care available to us.


Raven Lopez
Daughter   

I am sixteen years old and I was born with HIV. If I did not have access to the care that I am receiving, I do not think that I would be here today to celebrate National African-American HIV/AIDS Awareness Day.