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Will The Denver Principles Ever Be Relevant To Black People Living With HIV & AIDS?

| 5 Comments

As much as I respect and acknowledge the impact the Denver Principles had when written, I challenge its relevance and importance to today's impacted community. Among women, young people, and people of color in particular, the historical document has as much influence and resonance as the United States Constitution - in defining 'We the People' its original authors did not have all of us in mind. This is not to imply that the Principles co-authors were racist or sexist. However, there is a problem with how we perceived the epidemic at its beginning and how we repeatedly and incorrectly 'labeled' the epidemic out of fear and ignorance. You also hear something very different and dramatic when you ask different people about its meaning.

Written in 1983 by 12 men during the National Lesbian and Gay Health Conference in Denver (CO), the document helped to define the respect and dignity of people living with and dying from AIDS-related illnesses in the early years of the epidemic as a right. While condemning the label of 'victims', the Denver Principles went on to provide recommendations that ensured involvement at 'every level of decision-making and specifically serve on the boards of directors of provider organizations' and 'equal credibility as other participants' in sharing experiences and knowledge. It articulated in no uncertain terms the right of people with AIDS 'to die - and LIVE - in dignity' when much of this country refused to even say the letters H - I - V.

In the mid-80's much of the country also believed, because incorrect labeling by the CDC as the 4H Disease (Haitians, homosexuals, hemophiliacs, and heroin users) or GRID (gay-related immune deficiency), that AIDS indeed was a White gay male disease. And though the early 90's brought us the Ryan White Care Act and other HIV & AIDS-related services and care, the U.S. continued to see meteoric growth in the epidemic in inner cities and rural communities in the South - many of whom were heterosexual men and women of color.

The terrifying atmosphere that engulfed me and many others like me in the mid-80's was one many of us did not survive. The fear of acquiring the deadly virus was equal to instant death. Not just because of the images of wasting and dying of horrible, indecipherable deaths were front page news, but because many of us - including me - would rather die from our own self-destructive hands than suffer through the horrible transformation; or worse, have someone find out. Dignity and respect did not live in Norfolk (VA). Hate and violence against people suspected of having the package were not only allowed in places like Jackson (MS) and Baton Rouge (LA), they were encouraged and organized.

As a young Black man I've grown up knowing, loving, and losing many friends who never knew 'full and satisfying sexual and emotional lives' and never thought they had a choice. Now 26 years living with HIV, I sit with men and women of similar age that who never knew the Principles, or knew them but figured it didn't apply to them. Maybe it's because of the heroic ownership that some gay White men hold to the activist history within this epidemic. I still remember the shouts from a few gay white men in south Florida to Black women participating in the same rally for access to care, "Go home! Black people have stolen our epidemic!" Perhaps it stems from the 1996 essay by Andrew Sullivan 'When Plagues End' that essentially announced the end of the AIDS epidemic for him by having access to life-saving drugs. Though he apologized later saying that it was 'easily the most offensive thing I ever wrote', the damage had been done.

The truth is that a far majority of us living with and affected by HIV and AIDS have lost histories riddled with name changes and relocation; torturous separations from families and loved ones and arduous battles with psyche and self, facilitated mind-altering and reality-escaping substances. We've hoped for a rescue that never appeared. Often, in regard to HIV advocacy history and as a Black heterosexual man, there was always a party we weren't invited to. So we all decided to create our own party, our own history, our own dignity and rescue. And as this epidemic continues to get younger and further impact the super poor, marginalized, and criminalized, documents like the Denver Principles sound more like fiction than fact.

I know that I have a lot of friends and allies who will have tremendous problems with me for saying these things and that's fine, I'm a big boy. Additionally, the idea that we are in some search mode for a new national voice for people living with HIV is ludicrous, since many of the same people also believe we should have no meaningful contact with those voices. Rather than passing down lyrics of some old, distant song some of us grew up with, maybe we should construct a melody with lyrics and rhythm we can all contribute to. It doesn't take long to figure out where that is happening and where it is encouraged and supported.

Yes, the Denver Principles live on and for many will continue to be a profound and powerful statement in HIV & AIDS advocacy history. Many others, like me live and breathe very different histories with different languages. Our success in ultimately defeating this epidemic and related social justice issues will not come from dusting off old documents but shaping our collective mission statements and goals to fit all of us.

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Comments on Larry Bryant's blog entry "Will The Denver Principles Ever Be Relevant To Black People Living With HIV & AIDS?"

This was good information for today's people who are living with HIV/AIDS. This article speaks to the facts and the truth that is being missed in communities around the World. I appreciate the writer for his knowledge and commitment to challenge the realities of yesterday. Knowing that change must happen before a cure is found and all communities must have their input when conversation is happening at these tables.

Larry, I appreciate the points you’ve made about the sense of irrelevancy some find with the Denver Principles and the belief that the document is intertwined with the early years of the epidemic and the many failings of that time.

The alienation of so many, that you describe so well, is a challenge for our movement. It is a mistake to perpetuate it through the promotion of a “collective history or mythology” that is incomplete.

Some, perhaps most, of what has been recounted in film and literature about the epidemic and activist history to date does perpetuate many myths and leaves out the stories of those who are so often the first forgotten.

Few people know that the idea for what is today Amfar came from an African-American man, the partner of a patient of Dr. Joseph Sonnabend. Or that one of the key people in the first days of NAPWA was Fred Garnett, an African-American man with AIDS (who also was the first friend I made at the Jesuit high school I attended in Wisconsin).

Those who were never photographed, never quoted and never celebrated have been the truest heroes since they first started emptying the bedpans of their friends and neighbors who were dying.

Not long ago I got an email from a young man in Kentucky, asking me if I happened to have known his mother, Amelia “Amy” Sloan. I did meet Amy once, through Michael Callen, when she signed a fundraising letter for the People With AIDS Coalition/New York.

This young man had just turned two years old and was at his mother's side when she died in January of 1987. In his email to me he said he knew she was an activist, but has had difficulty finding out much about her. I asked others, including some of the most prominent women with HIV who are activists today, if they knew or knew of her; none did.

That made me curious, so I asked if they knew who was the first woman with HIV who “went public” and became an activist spokesperson. Some suggested the amazing Iris de la Cruz, who was a powerful and early activist in New York, or several others who went public in the late 1980s.

But no one mentioned Amy, who was one of, if not the, earliest when she went on Oprah in 1985, right after she found out she was pregnant and had HIV.

We need these early histories examined and documented, to honor that pioneering activism, correct the record and convey the truth that AIDS activism didn’t begin in March of 1987 with ACT UP and that it wasn’t then, nor has it ever been, just about white gay men.

I don’t think the gay white men who wrote the Denver Principles were consciously speaking from their identity as gay white men, but instead as human beings who were fighting for their lives--fighting not to be viewed as "victims," fighting not to be disempowered by the illness that they shared in common.

They spoke from some degree of privilege, to be sure, but the privilege to demand the values reflected in the Denver Principles is a privilege every human should share and no one should be shy to assert.

But I think it would be wrong to conflate the epidemic’s history, which deserves much examination and criticism, with the values and ideas espoused in the actual Denver Principles manifesto, which weren’t invented by the gay white men who wrote it.

They were the same concepts promulgated by the women's health movement in the 1960s and 1970s. At least two of the Denver Principles authors, Michael Callen and Richard Berkowitz, identified strongly as feminists and articulated at the time that they drew their inspiration from the women’s movement.

Your column doesn’t criticize any of the specific language in the document, so I’m assuming your concern isn’t with what the Denver Principles explicitly says but more about what the history associated with those early years represents and how uncritically it has been viewed, which I think is fair.

While the Denver Principles had a tremendous impact in the early years, providing a foundation for the self-empowerment movement, it is far from a reflection of what actually happened or a description of a reality that ever existed for people with AIDS. If only it was, we would be in an entirely different place today.

The Denver Principles was a statement of what should be and what some have striven to achieve ever since. As I reread the document today, it sounds as relevant as ever, with ideals that resonate not just with people with HIV but with people engaged in healthcare advocacy across a range of conditions.

But over time those ideals were increasingly ignored as the epidemic institutionalized, AIDS, Inc. took over and the peer-to-peer service delivery system that was created in those early years moved incrementally back towards a more traditional "benefactor/victim" model.

Many hold the Denver Principles to be iconic, but that’s perhaps not unlike the U.S. Constitution, a document revered by all but adhered to by those in authority only when it is convenient or inescapable.

Housing Works, where you work, I believe is one of the agencies that has remained truest to the Denver Principles, not only believing that self-empowerment is a vital means towards improved health outcomes and quality of life, as well as mobilization for broader social change, but reflecting that in its governance structure, development and delivery of programs and services.

What they're called doesn't matter, but the concepts of patient autonomy, the right to representation and participation, inclusion on boards of directors, selection of our own leaders, the right to intimacy and full lives and the demand that we be seen as whole persons, not simply defined as a disease, are as important today as they ever were.

Those ideas may get reinvented, interpreted in new ways and applied in new realms as time passes, just as the Denver Principles authors appropriated ideas from the women’s health movement.

To the extent those processes are driven by those individuals affected the most, I am all for it and look forward to working with you and others to see that happen.

you write: "maybe we should construct a melody with lyrics and rhythm we can all contribute to. It doesn't take long to figure out where that is happening and where it is encouraged and supported."

why leave it as a mystery or puzzle? just tell your readers precisely where they can go witness and/or contribute to this new collective understanding.

as it is, your essay really feels like a screed. you identify many things worthy of redress, but not a single such thing about the Denver Principles themselves.

in fact, it does remind me of many attacks on the US Constitution itself as "something written hundreds of years ago with no relevance to today"...to this day i ask people saying that to either present or point me to a new draft Constitution that meets their approval.

They never fail to fail to do so.

So, what do you propose "replacing" the Denver Principles with?

Fascinating! I bet your next text will attempt to convince readers that homophobic Africans are justified in killing their gay brothers because homosexuality is, after all, merely a tool of the evil European white man who has renounced Christianity while putrefying the sanctity of your precious African cultures - and the ASOs, doctors and government bodies will all applaud you, I'm sure, with their vapid political correctness in their self serving and desperate attempts for social approval and financial gain - you're own leaders are killing your brothers and sisters infected with HIV - white gay men activists and white lesbian activists and many, many others have worked tirelessly for decades to try to include African Americans in the fight to stop AIDS - good luck trying to save the 30 million+ that will die from this disease in Africa with your contemptuous rhetoric - I won't lift a finger ever again to stand up for or try to help the cause of those suffering who in turn denounce us in the name of their almighty heterosexuality - shame on you! And shame on Poz for promoting your self pitying drivel. Stand up and take responsibility for the future of your kin and stop blaming others for your own self hatred.

It is clear that there is more reconciliation that is needed within HIV Advocacy for Unity, especially with people of color, for the angry and bitterness still comes through even today within the 50 years after the civil rights movement and the Denver principals to demand humanity to act for all. I for one believe AIDS is over in the USA and the battle now is curing HIV, for I will not live in the past of fear and branding of the words in capital letter's called AIDS, over my life, for me the war on AIDS in the USA is over and the battle for me each day is to live life to fullness and free from the old brand of AIDS and Death.

For in my community AIDS is not spoken for it is full of shame, fear and unleashes mental health break downs both for HIV people and the care givers of the past.

Yes, HIV dieses is needing a fresh educational concept of hope, faith, and the energy for a life time of loving relationship building within our communities. A new song to be smart and avoid HIV disease and have the courage to address one's race, sex and healthie human sexuality, for it is about courage, honor and self-respect in my life's journey, now. I had to learn these concepts of manhood and forgivness in the many battles for respect and acceptance in old school days of AIDS. It is time to address the boys and men in the concept of honorable manhood, with courage to our communities both of color and white.
Where are the Men of honor in my community, I ask?

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This page contains a single entry by Larry Bryant published on June 10, 2013 2:18 PM.

Youth Action Insight - Five Days In The Life Of A Young Activist was the previous entry in this blog.

Housing and HIV: Hold on to HUD! is the next entry in this blog.

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