#RealTalk: Nothing About Us Without Us - The Black Community & HIV

As a person living with HIV, I have come to quickly learn that many, if not all organizations that have anything to do with HIV & AIDS in existence do not have people with the lived experiences of being HIV positive on their boards. I keep thinking about the The Denver Principles, a list of demands that changed healthcare as we know it. The second recommendation "2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations...." comes to mind. When did we get away from  being the leaders of our own movement? Moreover, when did we drop the ball on HIV 101 in the Black community?

It is frightening to me that I had to explain to a man, a Black man, a straight Black man who is one year older than me (he is age 32) what HIV is and how it works. While I graciously explained and told him he could reach out to me in the future, I thought about those who look like me that work as service providers. They are forced to only focus on MSM or Men who have Sex with Men in their work of getting to ZERO. Many of the the coordinators, prevention specialists, and others who work on the community level are not in management and are Black. There are very few Black persons in management when it comes to organizations that provide care, on top of that, the ones (not all) who are in high level positions tend to come off as elitist and out of touch.

Even more problematic is that the majority are Gay/SGL men, which speaks to the lack of education in the heterosexual, Bisexual and Trans communities. Straight Black women and men are at peril, especially women, IF we are to truly get to ZERO in the black community why are we ONLY focusing on Gay black men. If our community organizations like churches and leaders won't, why can't we table in the areas ourselves? When will there be a movement to hold the federal government to the fire to create a tracking system that is more holistic and respectful to the Trans community? After all, why keep counting Transwomen as men, while ignoring Transmen completely?

The point is that those of us in the know have an opportunity to take positions of leadership and take it upon ourselves to educate those we know that are not getting properly educated. We more than just testing if the prevention methodology has not teeth. Below you will find the The Denver Principles along with a little background about why it exists. 

"Nothing About Us Without Us!" (Latin: "Nihil de nobis, sine nobis") is a slogan used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of the group(s) affected by that policy. This involves national, ethnic, disability-based, or other groups that are often thought to be marginalized from political, social, and economic opportunities.

"It was 1983. Just a year prior, Acquired Immune Deficiency Syndrome (AIDS) became the fearful

nameplate for the murderer of gay friends and lovers. The virus that caused it, HIV, had only been identified a few weeks earlier. Amidst this atmosphere of unremitting grief and fear, a group of activists met in Denver as part of a gay and lesbian health conference. Among them, a dozen men with AIDS. And among their number, the inspirational Michael Callen of New York City, pictured at right, and safe sex architect Richard Berkowitz (Sex Positive), the only surviving member of the group today. They were about to do something that would change our response to AIDS -- and health care in general -- forever.

As the conference drew to a close, the activists asked to address the attendees. Rather than having a report presented about the state of the AIDS crisis, they wanted to speak for themselves. If the word "empowerment" hadn't yet been a part of the health care lexicon, it was about to be.

The group took turns reading a document to the conference they had just created themselves, during hours sitting in a hospitality suite of the hotel. It was their Bill of Rights and Declaration of Independence rolled into one. It would be known as The Denver Principles, and it began like this: "We condemn attempts to label us as 'victims,' which implies defeat, and we are only occasionally 'patients,' which implies passivity, helplessness, and dependence upon the care of others. We are 'people with AIDS.'"..." - POZ: How 'The Denver Principles' Changed Healthcare Forever, By Mark S. King

THE DENVER PRINCIPLES (1983)

(Statement from the advisory committee of the People with AIDS) We condemn attempts to label us as "victims," a term which implies defeat, and we are only occasionally "patients," a term which implies passivity, helplessness, and dependence upon the care of others. We are "People With AIDS."

RECOMMENDATIONS FOR ALL PEOPLE

1. Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.

2. Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.

RECOMMENDATIONS FOR PEOPLE WITH AIDS

1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.

2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.

3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.

4. Substitute low-risk sexual behaviors for those which could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.

RIGHTS OF PEOPLE WITH AIDS

1. To as full and satisfying sexual and emotional lives as anyone else.

2. To quality medical treatment and quality social service provision without discrimination of any form including sexual orientation, gender, diagnosis, economic status or race.

3. To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.

4. To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are.

5. To die--and to LIVE--in dignity.

SOURCE: http://data.unaids.org/pub/ExternalDocument/2007/gipa1983denverprinciples_en.pdf

This document is a goldmine that has been the template time and time again when it comes to healthcare and politics. Its about time we have education, TRUE representation, advocacy & Activism by us, for us.