Want to get a sense of what to expect or a chance to review policy priorities before you arrive in DC?
Join the US People Living with HIV Caucus, a national coalition of PLHIV networks and individuals, for an orientation webinar to AIDSWatch 2016! The HIV Caucus will provide an overview of the agenda and program, share some opportunities for networking, and discuss the AIDSWatch 2016 policy platform.
Nikki Giovanni wrote a poem called “The New Yorkers.” This is the beginning of that poem:
“In front of the bank building after six o’clock the gathering of the bag people begins. In cold weather they huddle around. When it is freezing they get cardboard boxes.”*
Stop! I immediately thought of HOPWA (Housing Opportunities for People with AIDS) and the truth we were striving to share with members of Congress on April 14, 2015. Four hundred advocates from thirty states and Puerto Rico were about to converge on Capitol Hill as part of AIDSWatch 2015. One of my peers said, “You cannot stay adherent to medications if you are homeless.” Another said, ”There are currently fifty thousand households served by HOPWA while 1.2 million people in America live with HIV.”
We had so many issues to bring to the attention of Congresspeople. These are some of the issues:
1) there are fifty thousand new HIV infections each year;
2) young people under the age of twenty-five accounted for one in five new infections in 2012;
3) in more than one thousand instances, people with HIV faced charges under HIV-specific statutes in the United States and these charges are not based on science;
4) syringe exchange prevents the transmission of HIV and there is a federal ban on syringe exchange programs!
I had an opportunity to attend a visual journaling class the Sunday after AIDSWatch 2015. I wanted to make sure that my collage pages reflected hope, with power, truth, and a clear civil rights message. We were led in meditation by our leader and then each of us began searching what would manifest our goals for the art we were creating.
I immediately found a magazine that had nine southern states as part of a beautiful graphic and I knew that was mine! One other page included the statistic “1 in 5,” and yet another page had young people at the microphone. My collage page for my journal was to tell the story of AIDSWatch with hope and determination. I have experienced so much profound joy on my journey, so the words “Experience Joy” dominate the top of my page.
In 2015, HIV is still a disease of disparities. We know and believe that health care is a human right. I was drawn to Twitter during our Monday morning forum at AIDSWatch, and found myself typing these words:
#pwnspeaks@Susancares2x We are HUMAN GEOGRAPHY! That means as constituents our words matter, our words are paramount, our words save lives
”We are HUMAN GEOGRAPHY! That means as constituents our words matter, our words are paramount, our words save lives!”
Race matters. African-Americans account for one half of all new infections. How can black women living with HIV get quality care if it is not mandated that providers, AIDS service organizations, clinicians, and public health departments get anti-racism training? We need to ask questions like: Are the Southern Poverty Law Center and the NAACP training and sending out attorneys to help in each of the nine southern states that are now the epicenter of the AIDS epidemic in America? Who is standing up for transgender women? Who is standing with and fighting for the end of discrimination against LGBTQ youth?
“One ounce of truth benefits like ripples of a pond.” We had so much truth to tell on Capitol Hill. The stigma is so great in nine southern states that many get an AIDS diagnosis on their first visit to a clinic. Where are the leaders from faith communities? Thirty four years into this epidemic we are still asking, “Where are our allies?”
What kind of truth would I tell our Senators and Representatives from Pennsylvania? I decided I had to speak about syringe exchange and comprehensive sex education. Young people in Lancaster County, Pennsylvania, can get $3.00 bags of heroin in rural areas and are desperate for a needle exchange program. Congress must end the federal ban on syringe exchange programs in the fiscal year 2015.
As a teacher, I have tried to share bold truth for years, regarding comprehensive sex education. One of our big “asks” as we spoke to the staffers of our Senators and Representatives was to eliminate the federal abstinence-only programs. They have never worked. Some seventh graders have openly stated that they have already had sex with three partners. They are desperate for truth from us. They are so valuable, so precious. Condoms need to be available in high schools. This is where I reiterate, “Young people under the age of twenty-five are twenty per cent of the new HIV infections each year.”
This work is arduous. As I look at my visual journal, I see that I included phrases like, “Follow your dreams,” “Feed your soul,” and “Seek adventure and respect each other. “ My dream has no fairy tale ending; rather it has an ending so bold that it’s happening as I write.
We, the people with HIV and AIDS, will end this epidemic. We are intrepid. HIV is not a crime. The Pennsylvania team spoke about Barbara Lee’s bill, the HR 1586 and asked our representatives to co-sponsor this bill, the REPEAL HIV Discrimination Act, because HIV criminal laws are often based on long-outdated and inaccurate beliefs rather than science. We had to explain to one staffer that if your viral load is undetectable it is not possible for another person to get HIV from you. What will you get from me? You will get authentic, bold, unrelenting truth!
The HIV epidemic is primarily an epidemic of women of color. We are waging a fierce civil and human rights battle! This is where I quote Nikki Giovanni once more: “For awhile progress was being made . . . then . . . hammerskjold was killed, lumumba was killed, and diem was killed, and malcolm was killed, and evers was killed, and shwerner, goodman, and chaney were killed, and liuzzo was killed, and stokely fled the country, and leroi was arrested, and rap was arrested . . .”
It is not OK that people still die of this disease! It is not OK that stigma exists and keeps people from being tested! It is not OK that children’s lives are lost because we don’t have comprehensive sex education in schools. It is not OK that there is a federal ban on syringe exchange. It would be worse if there had been no AIDSWatch 2015.
We, the activists and advocates, spoke mightily on Capitol Hill. On April 13, and April 14, 2015, we hope we spoke words so powerful that they may still be reverberating. Our work is unfinished. As Elizabeth Taylor once said, “We must win for the sake of all humanity.”
Susan Mull is a PWN-USA member, poet, writer, educator, and longtime activist based in Lancaster County, Pennsylvania.
*All quotes from Nikki Giovanni’s poetry are from the book Selected Poems of Nikki Giovanni.
What do you do when you are invited into a space and seemingly forgotten once you are present?
If you happen to be one of three beautiful, intelligent, and outspoken transgender women of color named Tela La’Raine Love, Arianna Lint, or Octavia Yaz-mine Lewis MPA, then you SPEAK UP!
It was during the Monday morning’s training session at AIDSWatch 2015 in Washington, DC, when the statistics were given on the likelihood of African-American and Latina women contracting HIV. At that moment Arianna Lint stood up and shouted, “What about transgender women?” Her question was valid, because we of the transgender community know that transgender women of color are 43% more likely to contract HIV than our cisgender counterparts.
Another crucial mistake that was given as a fact was that “transgender” falls under the category of sexuality. It was during the Q & A session that my three trans* sisters stood up with a microphone in hand to explain the difference to the organizers. Being a person of trans* experience is how one identifies his or her own gender. Being a person of lesbian, gay, and bisexual experience is how one identifies his or her sexual identity. The two terms are not synonymous.
While they possessed the microphone, the question was asked by Octavia: “Why was the opportunity to attend AIDSWatch 2015 afforded to members of the transgender community when we were forgotten about once we had arrived and were counted as being in attendance?”
We found it problematic that the organizers deemed it necessary to have transgender representation, but did not allow members of the transgender community to be at the discussion table. In doing so, there was no breakout session planned that highlighted the issues related to being a trans* person living with HIV. Our cisgender organizers made the assumption that they knew what was best for us, but no one asked about our personal narratives.
In effect, our lived experiences were erased and either categorized along with men who have sex with men (MSM) or along with cisgender women. Neither of these assumptions were accurate, because my narrative is completely different from the narrative of cisgender women. Much like the women who in all sincerity have said to me, “You are a woman” or “I have an issue with saying you’re a trans* woman,” they are inadvertently erasing my gender identity. If we in the transgender community are stripped of our trans* identity, then what is the message that is sent out to those who know nothing of the trans* lived experience?
The message is that we cannot think or speak for ourselves, which has been proven to be untrue. We are among those of the brightest minds, and we demand our place at the table. The time for waiting on the respect we so deserve is over.
My sisters demanded that there be a space created for the transgender population in which anyone could attend, so the discussion of our lived experiences could happen. It was at that moment that Michael J. Kaplan stood at the microphone and made a very heartfelt, sincere, and public apology to the trans* population in attendance for what had transpired.
Remember, all of this happened during the morning session, and at some point during lunch or perhaps a little after lunch had concluded, the organizers had a room available during the breakout sessions which included the 20 or so transgender women of color and some of our cisgender allies. Douglas M. Brooks, the Director of the Office of National AIDS Policy, came and introduced himself in our session and said hello to all of those in attendance. It was a monumental time in all of our lives, because our trans* identity was acknowledged and appreciated.
The goal of the space that was created for us was to come up with three asks from the organizers of AIDSWatch as to what we would like to see happen for the next year concerning the transgender population:
I hope to see more statistics given on the rate of infection in the transgender community.
I hope to see a breakout session that consists of transgender facilitators or moderators.
I also hope to see transgender people at the decision making table for the planning of next year’s AIDSWatch.
All in all, the camaraderie and fellowship that occurred at this year’s AIDSWatch is undeniable. I connected with fellow advocates in the fight to end the epidemic, and connected with some new ones. I spoke with my legislative officials and had great meetings. Hearts and minds were opened. Who could ask for anything more?
By Nancy Asha Molock, Regional Co-Chair, PWN-USA-Philadelphia
I attended AIDSWatch 2014 for the first time April 27-29. I had heard so much about it from other PWN-USA members, so I was elated to be awarded a scholarship for my hotel accommodations. I wanted to lobby on Capitol Hill and make it personal by putting a face to HIV/AIDS, so when the legislators are making decisions about HIV/AIDS funding they won’t just see black numbers on white paper. They will also see my face and the faces of many others who live with HIV/AIDS, and hopefully they will see how programs like the Ryan White HIV/AIDS Program and HOPWA (Housing Opportunities for Persons With AIDS) are important in improving the quality of lives of those living with or affected by HIV/AIDS.
The AIDSWatch training session was thorough and gave us the skills and confidence needed to lobby on Capitol Hill. I had never been in a room with so many other HIV-positive people at one time. Something shifted inside of me when I turned around and saw a sea of people, most of whom were HIV positive. Watching activists proudly stand and represent their states during roll call was awesome. I thought: no shame, no guilt = power. My eyes watered as I told someone that I always felt alone living with HIV until being at AIDSWatch. A man sitting nearby overheard me; he stood up, hugged me, kissed me on the cheek and said: “No dear, you are not alone.” I will always hold that memory close to my heart.
The visits on Capitol Hill to speak with our Senators and Congressmen and -women were a little unnerving at first, but by the second visit it became a little more comfortable. Our team was very professional; we told our personal stories and articulated HIV policy and the support we needed from them. It’s important for the legislators to see that people living with HIV can be proactive in their health care, and that we are more than just stereotypes of chanting protesters or people sitting on their bottoms collecting benefits.
The legislators also need to understand that people living with HIV do have the power of the vote, and we want to have people in office who are sensitive to our needs and who will pass laws and provide funding that will benefit us. I wanted to get that message across while in Rep. Chaka Fattah’s office. I mentioned to his Congressional aide that I live in Fattah’s district and have voted for him in the past and would like to continue voting for him. I feel that we were heard and hopefully our voices made a difference.
My total experience at AIDSWatch was life altering. I arrived in D.C. a little unsure of myself and not knowing what to expect; I returned home a more empowered and confident person. The trainings were enlightening and the Capitol Hill visits help to sharpen my advocacy skills. Meeting and bonding with other HIV-positive people was also very special for me.
Being at AIDSWatch has confirmed for me that I must continue in the struggle even if I get a little weary and want to quit, I shouldn’t. There are some people who can’t advocate for themselves, but their voices still need to be heard. It’s important for people living with HIV to have a collective voice to build collective power to ensure that our needs are being met, so that we all can live the best life that we deserve. I’m so looking forward to AIDSWatch 2015!
On April 28 and 29, more than 300 HIV advocates descended on Washington, D.C., for AIDSWatch, the largest annual national constituent-based advocacy event focused on HIV in the U.S. — two days of trainings and visits with lawmakers on Capitol Hill. From coordinating to asking important questions to teaching others what not to do at a Hill visit, PWN-USA members were there in force. Stay tuned for more images and voices from AIDSWatch!