Organizing Update from the Mid-Atlantic Region

May 11, 2012 in Policy/Advocacy

photo of Caressa CameronBy Caressa Cameron, Regional Organizer, Mid-Atlantic Region

The last few weeks have been action packed in the Mid-Atlantic Region!  One of the highlights was our participation in AIDSWatch 2012, one of the largest gatherings of HIV/AIDS advocates in the country. AIDS United mobilized a delegation of 10 Virginia health care providers and consumers to meet with Senator Jim Webb and Senator Mark Warner, as well as with all but two of Virginia’s Representatives.  Both Republican and Democrat Members of Congress showed interest in our issues and seemed re-energized around Virginia’s ADAP crisis.  Following AIDSWatch, advocates were urged to continue the momentum of the meetings by maintaining contact with the offices about issues and legislation impacting people living with HIV/AIDS (PLWHA) in Virginia.   AIDS United staff was instrumental in preparing the Virginia advocates for their AIDS 2012 congressional visits, helping them to hone their ideas and work through some of their fears or nervousness.

Earlier this month, I trained a group of advocates from the Women’s Collective on “The Do’s and Don’ts of Educating Lawmakers.”   This dedicated group of women learned how they can use the tools they have been given to cultivate change around HIV/AIDS issues that affect their lives daily.  They also made the commitment to use their new knowledge and skills from the training to build and strengthen their networks.

Another highlight over the last several weeks was being a part of State Summit IV. State Summit is an opportunity for state sex education leaders to gather in Washington, DC to strategize with national organizations about ways to pass comprehensive sex education policies at the state and national level. This gathering of teachers, healthcare professionals, and comprehensive sexual education advocates participated in training programs, plenary sessions, breakout groups, and skills building activities. I was inspired by the stories of victories in comprehensive sex education from across the country The summit promoted an atmosphere of best-practice sharing, learning and  relationship building. During the Advocacy Day, advocates made congressional visits to promote the issues impacting the development of today’s youth.  This included identifying support the Real Education for Healthy Youth (HR-3324/S 1782), a provision of the Affordable Care Act to fund a more comprehensive approach to sex education programs. The Real Education for Healthy Youth Act has components that will recognize young people’s right to information and provide direct funding to grants for sex education for adolescents, pre- and in-service teacher training for K-12 educators.  We also encouraged members to strategically invest in effective sexual health initiatives for Fiscal Year 2013, and urged the implementation of the President’s Teen Pregnancy Initiative.

This has been a great few weeks full of mobilization and advocacy. Watching the grassroots move effectively towards common goals is always inspiring. Stay tuned to the Policy Update for more on the latest advocacy and organizing activity in the Mid-Atlantic region. Remember, if you are interested in hosting an advocacy or issue training at your agency or want to get more involved in HIV advocacy, email Caressa Cameron at

In bloom: a longterm project update from Team Chicago

May 7, 2012 in AmeriCorps

Photo of Team Chicago planting

by Brittaney Bethea, Member, AU AmeriCorps Team Chicago 

As we inch toward the summer months, the residents at Alexian Brothers’ Bettendorf Place have a lot to look forward to. To encourage them to engage more with one another, the outdoor space surrounding Bettendorf Place will be transformed into a community courtyard.

Team Chicago presented this idea to Alexian Brothers mid-December last year. The Team’s vision was simply to provide a space where the support of friends and peers can reduce stress, encourage a positive outlook on life, and motivate individuals to remain proactive about their health. Since the beginning of 2012, Team Chicago has been planning and fundraising to ensure this project’s success.  In January, we held a focus group with Bettendorf residents to ensure the courtyard would meet their expectations. In February, we began a vigorous fundraising campaign that included fundraising through and partnering with local Chicago businesses such as Target, Early to Bed, Trader Joe’s and Home Depot to gain monetary and in-kind donations. Additionally, God’s Gang, a horticulture organization, and Whole Foods have agreed to provide flowers, plants, seeds and planting supplies.

Most recently, “Benefit for Bettendorf” was held in early April to also raise funds for the cause at MultiKulti, a multicultural community center located in the heart of Chicago serving the public as a central location for diversity, artistic expression, and activism for social justice. The event’s purpose was threefold: to promote safe sex, to raise awareness of the ongoing HIV/AIDS epidemic, and to raise money for Bettendorf Place. Thanks to a slew of spoken word artists, musical guests, and graffiti artists, the event was a huge success!

Soon picnic tables, benches, and other courtyard furniture will be purchased for the courtyard. As we enter the last two months of our AmeriCorps year, Team Chicago is gearing up to landscape the courtyard and host a celebratory end-of-project BBQ at Bettendorf. The Team is thankful for the friends, family, and co-workers who have supported the long-term project thus far. Stay tuned for updates on our project and a long list of thank yous to our supporters. Hope you’re as excited as we are to reveal the flourishing new courtyard to the Bettendorf community!

The Political is Personal: Finding a Home as an HIV Activist

May 4, 2012 in Policy/Advocacy

by Sonia Rastogi, Advocacy Coordinator, U.S. Positive Women’s Network, a project of WORLD

A couple of years ago, I did not know what advocacy and activism really meant. I understood that I was drawn toward social justice issues and ideas of equality. I understood that I wanted to walk on a personal and professional road guided by human rights. I did not know what that looked like for me, however. I could not connect all the dots, especially around HIV. I grew up in the 2nd generation of HIV – a generation that had HIV medications and that institutionalized HIV prevention, care, and treatment programs. Apparently it was not an emergency in the U.S. anymore, unlike the rest of the world.

My perspective changed, however, when I received an HIV-positive diagnosis. As a young woman in her early twenties I was devastated. It does not matter if it’s the 2000s. In that shock after hearing the results,  you feel like you’re in the 1980s. I slowly inched my way towards learning about women and HIV issues – at first I was looking for support, for community, for the opportunity to talk to another woman living with HIV.

I got involved in the U.S. Positive Women’s Network (PWN) and then it clicked. My story and my experiences are not unlike many other women’s experiences around the country and across the globe. The personal is political. Being a part of this network of fierce and courageous HIV-positive women and allies taught me that we cannot talk about curbing the epidemic without talking about the fact that over two-thirds of women experience some form of intimate partner violence for the first time in their lives before the age of 25; or the reality that about 1 in 7 men experience severe physical violence by an intimate partner at some point in their lifetime (CDC National Intimate Partner and Sexual Violence Survey).

We cannot talk about curbing the epidemic without recognized that women living with HIV in the U.S., disproportionately African-American women and Latinas, get sick faster, die sooner, and have poorer health outcomes. The South, a region of historical oppression and neglect, is experiencing a human rights crisis. In some counties and jurisdictions, the rate of women living with HIV exceeds the national rate of approximately 25%. Broken health care systems, poverty, and gender-based violence fuel the epidemic. In an environment where gender, race, and geography are more potent risk factors than individual risk behavior, we must ask ourselves how we are addressing root causes.

We cannot talk about curbing the epidemic without recognizing that homophobia and transphobia run deep. In Oakland, a trans woman was shot in her car on April 29. Authorities are investigating if the shooting was a hate crime. Thanks to Tiffany Woods, Trans Vision, and Tri-City Health Center, the story is framed to respect and not sensationalize. In Philadelphia, public transportation passes require a “F” or “M” to indicate gender – a regulation that has put many people at risk for discrimination on buses and trolleys. Thanks to Philadelphia Riders Against Gender Exclusion, this regulation is being considered for removal.

These are a few of the issues that we need to take action on when advocating for women living with and vulnerable to HIV. More importantly, women living with HIV must be in leadership roles to ensure that prevention, care, and treatment plans reflect and prioritize the realities of women’s lives. By supporting, preparing, and training women living with HIV, we invest in our future, our communities, and ourselves.

Reflections of a Semi-Centurion

in Policy/Advocacy

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

April 27, 2012 in Policy/Advocacy

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

in Policy/Advocacy

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.