By Susan Mull
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:
”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.