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Reflections of a Semi-Centurion

by Maura Riordan, Vice President, Access and Innovation

I recently was approached about writing a blog posting by one of our more youthful AIDS United staffers. When I asked what the theme of the post would be, he gingerly answered, “Well, kind of like reflections from an experienced activist. You know, someone who has been around a long time and has seen a lot.”

Here is what I heard: “We need someone old to write a blog and share some ancient history.”  It’s a good thing I take joy in my rapidly approaching 50th birthday, AND that I actually know what a blog is! I mean, I wrote my first blog post a few months ago, so I’m pretty savvy.

As I sit down to write this, I think back over the last 25 years, and how consistently present HIV/AIDS has been in my life. I graduated from high school in 1980. I spent the early 80′s learning all about being gay, and having quite a bit of fun along the way. It was a time of celebrating our sexuality and coming together to demand our rights. Then, several friends became ill and confusion and fear spread in gay communities across the United States. The “gay disease” had hit. Fear turned to frustration and anger as gay men in my generation – who were at that time in their 20′s – became ill and died far too young.

My friend Gary was diagnosed with HIV and said, “AIDS is like war. Everyone is dying around us, and there is no going home.” A decade that had started out like a party had turned into a war. And yet, nobody outside of the queer community seemed to acknowledge it, talk about it, act on it. We were watching young men waste away before our eyes, ending their lives looking like 80-year-olds. Stories of cruel and humiliating treatment of people with AIDS were far too common. I remember wondering how human beings could be so cruel in the midst of such suffering. I suppose that these kind of thoughts meant that I was growing up… growing up with AIDS as a catalyst for love, community, cruelty, injustice, suffering, grief, and the absolute resilience of the human spirit.

Those of us oldies who are still doing this work know that those were the worst of times, and yet in some ways, the best of times. We mobilized our community to take care of our own. We would sit and hold the hand of our dying loved ones, we would find the one or two doctors in a community that would dare to work with AIDS patients, we would organize food pantries and transportation. We mobilized our community to get mad and ACT UP! We took the horror and turned it into action that would forever change us.

As traumatic as the early days of the epidemic were, today we are faced with more complex and persistent challenges. Resources are shrinking rapidly, stigma still thrives, and the American public does not see HIV/AIDS as an urgent issue. We are failing in our efforts to prevent new infections and engage and retain PLWHA in care. The anxiety of not knowing what the ground will look like with the Affordable Care Act and The Ryan White program is palpable. And yet, we have treatment and new prevention strategies that could conceivably end AIDS! I could not have dreamed of this reality in the 1980s.

Unfortunately, our growing toolbox to end this pandemic is hugely incongruent with resources and realities on the ground. I was trying recently to explain this to my son, who is 8 years old and wanted to understand more about my work. He listened and looked confused, and then he said, “That’s stupid!” Sometimes kids just hit the nail right on the head. In some ways I feel more frustrated than I did in the early years. Everything seems achievable, and yet out of reach. How do we build the bridge to our first AIDS-free generation? I think we need some of our passion, our organizing, and our refusal to accept the word “no” from those early years. We need to remember the simple truth that we are always stronger together in the pursuit of basic rights and care for all. I think we need to stop the destructive turf wars among leaders of impacted populations in the epidemic. The truth is that until none of us are caught in the crosshairs of HIV/AIDS and all of its intersecting issues, we all lose. We have a challenge of mammoth proportions: securing the resources and capacity on the ground needed to end HIV/AIDS once and for all. Of course there will always be room for disagreement and robust discourse, but never for warfare with each other. It is a disservice to PLWHA everywhere, and those who have gone before us, to let bickering and posturing rule the day. I want to remember each day why I got into this work, and not lose sight of how far we have come.

I once heard Bill Clinton say, “If we can beat AIDS, we can do anything we set our minds to.” I agree with Bill on this one. There is no silver bullet here, but I do think that we have 30+ years of incredible achievement, suffering, resilience and wisdom to push us toward ending AIDS. Let’s work our way closer to that light at the end of the tunnel together

30 Years of HIV Activism: Refusing Silence, Choosing Action

by Ronald Johnson, Vice President of Policy and Advocacy

Last week and this week provided important opportunities to continue highlighting the role of advocacy in the fight against HIV/AIDS and to emphasize the need for strong HIV/AIDS advocacy today.  On April 18, GMHC (Gay Men’s Health Crisis), held a dinner to mark its 30th anniversary. At the dinner, GMHC honored its first policy director and former executive director, Tim Sweeney and recognized two of its co-founders, Larry Kramer and Dr. Lawrence Mass.  Kramer was also one of the key founders of ACT UP (AIDS Coalition to Unleash Power).  This past Wednesday, April 25, ACT UP/NY commemorated its 25th anniversary with a march on Wall Street, the site of the first ACT UP demonstration in 1987, and a rally at City Hall.  Supporters of the Occupy Wall Street movement joined the protest.  Also this week, on Monday and Tuesday, HIV activists from across the country came to Washington, D.C. for congressional lobbying for AIDSWatch 2012.

Seeing Tim and Larry and other heroes and heroines of AIDS activism at the GMHC dinner, remembering my participation in the first ACT UP Wall St. demonstration, and participating in the training session for AIDSWatch caused me to think about the past, present, and yes, the future of HIV advocacy.  The history of HIV/AIDS advocacy and activism does not need to be romanticized to appreciate its rich legacy and to acknowledge that nearly all of the progress that has been achieved in the fight against AIDS has been the result of the fierce, determined efforts of thousands of advocates.  Some are famous and have been honored deservedly, far too many have died, and the names and faces of most will never be known.  We fought for our lives and silence did indeed equal death.

The urgency that drove so many of us in the ‘80s and’90s still remains, as this year’s AIDS Watch agenda  and ACT Up demonstration and rally showed.  The specifics of our advocacy demands have evolved and changed as the epidemic and the times have changed, but we are still fighting for our lives.  We are also fighting for our future.  We can now credibly plan and work for an “AIDS-free generation” and the end of the HIV epidemic.  We have moved from having a President who in the early, devastating years barely mentioned the word “AIDS” to having a President who has committed his administration to a comprehensive national strategy that has a clear vision of a world without the inequalities and disparities that have so shamed our society.

But we are not there yet.  We must still contend with too many barriers that block the vision of an end of AIDS.  Health care reform under the Affordable Care Act, which already is benefiting people living with HIV/AIDS and will expand care to many thousands, is under relentless attack and much hinges on the upcoming decision of the Supreme Court on the whether key provisions of the law  are constitutional.  We are confronted with proposed spending cuts to vital programs that are obscene in their impact if enacted.  We continue to demand that science trump politics and ideology in setting policies and developing programs.  We face an upcoming election cycle that could result in stopping, and in many ways reversing, the 30 years of progress achieved through advocacy.  That’s why today’s HIV advocacy, from AIDSWatch to the myriad grassroots efforts across the country are so important.  We must and can be the new heroes and heroines of HIV activism.  Silence, and inaction, still equals death.  Let’s all LIVE.

Kony 2012 and Soft HIV Activism

by Jimmy Schneidewind, Public Policy Associate

She wakes up wearing a red wristband for HIV awareness. She goes to work and writes a blog about the ADAP crisis that she posts to her organization’s website. She signs on to her Facebook account. She posts a link to a fact sheet detailing how the Affordable Care Act will improve the lives of people living with HIV. She “likes” a page declaratively titled, Stop AIDS. Her wristband bobs as she maneuvers her computer mouse. She receives an email imploring her to call and urge her U.S. Senator to vote No on a budget proposal that would cut funding for programs serving people living with HIV. She leaves her office to attend a congressional briefing on viral hepatitis where she does live tweeting. The meeting ends; it’s 5:00. She goes home, changes out of her work clothes and into her running clothes. She only has 24 days left until the marathon that she has been using to raise money for HIV organizations.

Is she an activist?

It is likely that history will regard someone like her as my generation’s (I am, cough cough, 27 years old) version of an HIV activist: an individual whose activism is measured by the amount of tweets, Facebook posts, paraphernalia owned, and money raised. In other words, a soft activism in which the goal is usually to raise awareness of an issue by broadcasting opinions, resources, and information through public channels. Soft activism serves to engage many in work where the impact is vague or not easily measured. Soft activism stands distinct from, though not at odds with, “hard activism.” The hallmarks of hard activism typically are direct action, boots on the ground, specific goals, and with participation that is lower in numbers but perhaps more fervent than that of soft activism.

Most self-described activism purists bristle at the suggestion that this new model of civic engagement, the majority of which happens in front of a computer rather than in the streets, could be referred to as activism. Recently, the tension between new and old school activists became a fascinating sub-plot in the global uproar over Kony 2012, a campaign to catch and arrest fugitive and Ugandan war criminal, Joseph Kony. The campaign, promoted by non-profit organization Invisible Children, seeks to raise the profile of Kony to such celebrity proportions (George Clooney is used as an example) that his capture would be inevitable. To help Kony achieve dubious fame, Invisible Children is arming young people with stickers, buttons, and wristbands, all of which are included in a $30 action kit that is available for purchase on the organization’s website. Additionally, the Kony 2012 video and Invisible Children Facebook page, the duel-motherships driving the campaign’s popularity, garnered tens of millions of views and followers within weeks.

The campaign, and Invisible Children, immediately encountered a firestorm of sharp criticism for a variety of perceived offenses, including factual inaccuracies, perpetuation of the white savior industrial complex in Africa, and shady organizational finances. Most pertinent for this article, however, Invisible Children was roundly ripped for telling young high-school and college-aged students across the country that they could change the world and bring international war criminal Joseph Kony to justice by using the action kit and engaging in social-media. These critiques became almost as in-vogue as the campaign itself.

But the criticisms rarely, if ever, focused on whether or not the Kony campaign could be a boon in a manhunt for Joseph Kony, but rather, if it should be. In other words, many critics wondered less if a recipe of Facebook, Twitter, Youtube, and action kits, sprinkled with youthful enthusiasm, would be effective and more if it would be virtuous.

The challenges of activism in disparate fields are hardly interchangeable; however, the debate being waged over Kony 2012 is one that should sound familiar to those of us working to end the HIV epidemic. There are those who will say, out of some intellectual piety or misguided activist self-righteousness, that making activism accessible to everyone dilutes the craft. This argument ignores the truism that soft activism acts as an entry point to the field for many young, nascent activists. If activist purists demand, as fraternities and sororities do, that everyone pass an initiation test for the right to be called an activist, the HIV community will lose young people who could one day become vital contributors to our movement. Furthermore, if we allow our model of activism to become so narrow and rigid that it is not capable of expanding and evolving to accommodate diverse people and methods of activism, then we have much more serious problems to address than how Facebook is compromising the sanctity of HIV activism.

The reality is that people of my generation have done more than just join social-networking sites in droves; we’ve made it impossible for decision-makers not to join them as well. We have bulldozed past the moment when elected officials could choose to ignore social-networking sites at their own peril and arrived at a period where maintaining a profile on social-networking sites is the bare minimum needed simply to communicate with constituents, let alone win an election. Show me a public representative who does not have a presence on Facebook, Twitter, and Youtube and I’ll show you a person who is looking for another career path. By forcing officials and candidates to adapt to our methods of communicating, we have succeeded in achieving one of the most fundamental parts of our democracy; the part where they respond to us.

Soft activism does not displace and is not mutually exclusive to the essential and serious work of finding long-term solutions for long-term problems. In fact, soft activism is almost always complementary to fixing an ongoing problem. In the world of HIV advocacy, we depend on the people in our networks, many of whom do something for a living that has nothing to do with HIV, to influence their members of Congress through phone calls and emails. Without a significant constituency base, our advocacy efforts for better AIDS policies are toothless.

In his autobiography, Malcolm X tells the story of a white college girl who, so affected by a speech he had given in New England, flew to New York to seek him out. When she found him in a Harlem restaurant, she asked him what she could do to help bring racial justice to America. He told her “Nothing,” and she left crying. Later in the book, Malcolm realizes that there was a lot the woman could have done, if only he had been able to see past what he deemed to be disqualifying characteristics.

It may very well be uncomfortable to think that people can “do” activism with a computer mouse. It is maddening, however, to think that any HIV activists would tell scores of enthusiastic young people that there is nothing they can do so long as their preferred method of activist-engagement involves social-networking sites, wristbands, blogs, or raising money by running marathons.

To answer an earlier question: she is an activist if we allow her to be.

The White House Hosts Conference in Atlanta on HIV/AIDS in LGBT Communities

Charles StephensThe White House held a conference focused HIV/AIDS in LGBT communities on the campus of Morehouse School of Medicine on Thursday April 19, 2012. AIDS United Southern REACH grantee Georgia Equality, was instrumental in the planning of the historic event with other key community stakeholders in Georgia.

The conference opened with remarks from Gautam Raghavan, LGBT liaison in the White House Office of Public Engagement. Following him was Dr. Valerie Montgomery Rice, Dean of Morehouse School of Medicine (and former AIDS United Trustee), who urged the community to transform “health disparities into health equities,” and highlighted Morehouse School of Medicine’s commitment to ending health disparities in marginalized communities.  Rounding out the early morning speakers was Dr. Grant Colfax, the recently appointed White House Director of National AIDS Policy, who spoke about the possibility of achieving an AIDS free generation.

Dr. Kevin Fenton, Director of the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at the Centers for Disease Control and Prevention (CDC) talked about the impact of HIV/AIDS on LGBT communities in general, and young black men that have sex with men (MSM) in particular. There has been a sharp rise of HIV infections among young black MSM, which is a 50% increase between 2006-2009. Dr. Fenton went on to talk about some of the drivers of the epidemic, including social factors like stigma, among the country’s more vulnerable populations. Fenton was particularly passionate about the role homophobia plays in the epidemic in LGBT communities, and insisted that a more holistic approach has to be adapted in grappling with the social drivers of the epidemic. Dr. Fenton also indicated that as education and income decrease, HIV prevalence increases. He affirmed CDC’s commitment to the health and wellness of gay men, and said that the agency will be launching more social marketing campaigns as well as other initiatives to target vulnerable populations.

The first panel of the day “Overcoming Disparities, Getting to Equity,” was moderated by Allison Nichols of the U.S. Department of Justice.  The panelists included: Loida Bonney of Emory University, Beverly Guy-Sheftall of Spelman College, Rhonda Holliday of Morehouse School of Medicine, Reverend Edwin Sanders of Metropolitan Interdenominational Church and Patrick Sullivan of Emory University. Sullivan asserted that “homophobia is a Public Health hazard.” The panelists went on to talk about the lack of resources and challenges faced by the transgender community in accessing HIV care.

The second panel was led by former Surgeon General David Satcher on “Improving Health Outcomes through Science, Policy and Practice.” The panel included Vignetta Charles, Senior Vice President of AIDS United; Michael Horberg of Kaiser Permanente;  Vel McKleroy of CDC; and Patrick Sullivan. The panelists addressed how to best overcome the barrier between Science and Policy, the importance of looking at not only the challenges of the transgender community but also the resilience. Vignetta Charles indicated that AIDS United’s Access to Care program works closely with LGBT communities, and pointed out how everyone in the room is impacted by anti-gay stigma.

David Malebranche, Professor at the Emory University School of Medicine, was the lunch time plenary speaker and provided fascinating insight into the nuisances of sexual pleasure and sexual health. He also spoke about the importance of addressing intersectionality, which is the multiple identities that we inhabit, and how those identities shape our worldview.

The afternoon wrapped up with a series of workshops which included: Leadership Development and Organizational Capacity Building for LGBT Organizations, Medical Provider Readiness, Successful LGBT HIV Prevention and Access to Care Programs, Needs of MSM and Transgender Youth, Community Partnerships, and Couples.  The conference provided an excellent blueprint for how we address the disparities of HIV in LGBT communities. The next White House LGBT Summit will be in Minneapolis, MN on April 28.

Charles Stephens is the Southern Regional Organizer for AIDS United. You can follow him on twitter @CharlesAUsouth

From a Leather Jacket to a Suit Jacket: Still An HIV Activist

by Jeff Graham, Executive Director, Georgia Equality

“I’m so tired of talking about AIDS, let’s make sure we talk about other issues this year.” Those words were uttered by a young gay rights activist while discussing programming for the University of Texas’ annual gay and lesbian awareness week – in 1989.  I was that activist and I was totally unprepared for the karma that this sentiment would unleash. In 1989 I thought I had had my fill of AIDS activism.  I had already been talking about AIDS to my fellow students in support groups and classroom lectures for five years and was ready for a change.

The next week I went to my first organizing meeting for the Austin chapter of ACT UP and everything began to change.

Within the year I had dropped out of graduate school, moved to Atlanta and committed my first act of civil disobedience.  I was committed to devoting all my energies to fighting the epidemic that was claiming the lives of too many of my friends.  I had a very hard-line attitude towards activism: If you weren’t with us in the streets, you weren’t really an activist!

Twenty years and a dozen arrests later, I have a much greater appreciation for the fact that advocacy takes on many different forms.  Each of them is a valid approach in its own right, but none of them can be successful on their own. In many ways, it’s like building a house.  You must use every tool in the toolbox.  The force of the hammer is needed, but so is the precision of the measuring tape.  It also requires a team of people working together, each using his or her unique skills to support the successful completion of the project.

Today my advocacy is defined by analyzing the impact of legislative and bureaucratic action on a person’s ability to access health care, the intersection of LGBT and HIV advocacy issues and working specifically to educate elected officials on the state and local level on the realities of HIV in their own communities. I spend more time creating talking points and briefing papers than making banners and placards, but I know that both are equally important when trying to motivate a group of people who remain blind to the needs of people living with HIV/AIDS.

And after a quarter century, I still feel the urgency.  Despite all we’ve learned about effective interventions, too many people continue to become infected each day. Despite how large the HIV system of care has become, too many drop out of care due to frustration at the lack of resources. Despite the hope that medical advancements provide for living a longer life, too many lives are still cut short.

These days I spend more time in a suit and tie than a leather jacket and Doc Martins, but my passion for the work is just as intense as it was when I attended my first protest.

The Fight to Catch Up And Start Moving Towards an AIDS-Free Generation

by Sarah Audelo, Senior Domestic Policy Manager, Advocates for Youth

I’ve never known a time without HIV and AIDS. It affected my family early as my uncle was diagnosed positive before I was born. Even my high school in conservative Bakersfield, California had the AIDS Quilt visit our campus.

I entered this world of HIV and /AIDS activism reading stories of civil disobedience by groups like ACT Up in Washington, D.C., San Francisco and at the New York Stock Exchange. Growing up, I remember Pedro Zamora sharing his status on MTV’s “Real World” even though I probably shouldn’t have been watching it at the time. When I started organizing on condom distribution, I heard rumors of condom commercials airing during prime time in the 90s. And when I moved to D.C. to go to college, I even had a chance to attend the Ryan White National Youth Conference on HIV/AIDS.

But today, things are much different.

Just recently the Centers for Disease Control and Prevention announced that fewer young people are learning about HIV than in previous years. Condoms are locked up at drug stores. And even though study after study shows abstinence-only-until-marriage programs are ineffective, many states continue to teach these programs and lawmakers are paving the way to make it easier for them to do so. The Ryan White Youth Conference is no more and the only group showing a significant increase in HIV incidence are young men who have sex with men (YMSM), primarily YMSM of color.

The more I learn where we used to be as a country, the more I feel like my generation’s mission in this fight is to get the country back to that sense of urgency that was so prevalent in the 80’s and 90’s so we can actually move forward.

But make no mistake, young people are still concerned, engaged, and taking charge.

While you may not see young people getting arrested in acts of civil disobedience, I do see them correcting the myths their friends (and unfortunately sometimes teachers) hold about HIV, sending their younger siblings condoms to distribute at their high schools, organizing education events for World AIDS Day, learning to become mobile testers and more. Through social media we collected signatures and pressured the Milton Hershey School to stop discriminating against a HIV positive 13-year-old, shared and discussed on Facebook and Twitter Magic Johnson’s “The Announcement” with an audience that otherwise is not actively involved in the movement, engaged with and questioned the White House’s commitment to HIV prevention in youth and more.

While we may not be as visible and in the streets as much as previous generations have been, young people are still doing amazing work.

Of course, we can always do more. What we need to make that happen, however, is framing and guidance.

The amazing thing about this generation is that they get, in my opinion, intersectionality better than other generations. Our youth HIV activists are making the connections between HIV  and sex education (prevention), immigration (issues around care and treatment), the economy (hard to get a job if you’re positive and would have to give up health care), abortion (restricting access to services), and LGBT issues (increase in incidence, housing concerns). Adults need to empower youth to get involved on HIV and AIDS and allow us to work from an intersectional framework.  They also need to share their wisdom about what it was like at the beginning of the fight and the best ways to make change now. Adults need to work with young people most affected by HIV and AIDS — youth of color and LGBT youth — and give them support through paid internships and guidance to be successful in this movement. And frankly, young people need a seat (or five) at the decision making tables-whether it’s the President’s Advisory Council on HIV/AIDS or Community Planning Groups.

In December of 2011, President Obama called for an “AIDS-Free Generation.” To get there, HIV and AIDS organizations are going to have to invest in the next generation without discounting the impact of what the movement looks like now, versus what it looked like back then. Youth should be seen as experts when it comes to their communities and peers. Young people need to be nurtured and trained as not only the leaders of the future, but the leaders of today.