In the past years, I have always been the sole participant from my region. Despite my best efforts, I always felt my attempts to convey the diverse personal journeys from my area fell short. This year with the presence of my colleagues at my side, I finally felt that the true face of our community was represented. It was a rich opportunity not only to share with legislators, but also to learn from one another as we shared in this empowering event, symbolic of the larger process in which each of us plays a vital role.
Even as a veteran activist in DC and New York, I can’t describe the thrill of receiving my first invitation to a White House sponsored event, the President’s Advisory Council on HIV/AIDS (PACHA) meeting.
As the ’newbies’ we traversed trainings, public commentary, celebrity pictures, and legislative visits. Below is a conversation we had about the excitement, empowerment and renewed dedication we all gained through AIDSWatch 2010.
Scott: What were your fears and expectations prior to flying to Washington, DC for AIDSWatch?
Wayne: My only concern was the logistics of getting around DC with peripheral neuropathy, especially knowing that I should expect to do extensive walking around Capitol Hill. I expected to meet a well-organized and well-informed contingent of activists from every part of the nation. I had already met NAPWA’s Vanessa Johnson and Juan Quinonez at Reunion Latina in Albany in March during the SABER training, 10-module comprehensive advocacy and empowerment sessions, so I was looking forward to seeing them again during the planning session. Sure enough, Vanessa warmly greeted us at the door and Juan registered us. Also, since I had previously participated in giving public testimony to ONAP on the formation of a National AIDS Policy I was looking forward to the PACHA meeting.
Shaquan: To me, AIDSWatch was advocating on a whole new and different level, so I was a bit nervous. I felt I really had a chance to make a difference in advocating on behalf of African-American positive women like myself. I was really excited once I received my security clearance to attend the PACHA meeting at the White House! When I registered, Natalie Pojman (our White House staff contact) sent me an email saying because of limited space she’d have to get back to me to see if I made the list of attendees. When the confirmation email came I was very happy, literally jumping for joy at the opportunity and honor of being selected!
Scott: What would you like to share with POZ readers about the PACHA meeting and the status of the National AIDS Strategy?
Wayne: First of all, I was pleased to see such diverse representation on the PACHA committee. But there is so much work left to be done to unify HIV services across the different states, and Jeff Crowley, the Director of ONAP, his staff and PACHA are somewhat limited in that they can only make recommendations to the President and legislators about policies to be implemented. Nonetheless, I am amazed at the amount of progress that has been made despite the organizational and political complexities the committee and ONAP must face.
Shaquan: I learned what the role of and expectations were of each individual PACHA committee member. I received a comprehensive overview of the goals and objectives of a National AIDS strategy. But, I feel that in order to move forward PACHA needs a lot more support from public and private sources in developing and implementing our national strategy.
Scott: As consumers who have participated in the National AIDS Strategy process, what has that personal inclusion in the process meant to you?
Wayne: I’m a long-term survivor, involved with the epidemic since a close friend died of GRID (“Gay Cancer”) in 1981. It’s gratifying to know that on a White House level we are finally developing a national policy that will translate into an equitable and positive future for all Americans and that hopefully will pave the way to a world without AIDS.
Shaquan: During the PACHA meeting public commentary period, I was allowed an opportunity to voice my concerns on what this strategy needs to address. I was able to share my own personal experience as a black woman living with AIDS, and remind PACHA members that some of us living with AIDS may not have enough time left to wait for a lengthy planning and implementation process. I believe I was infected because of a lack of education and public awareness in my community about HIV/AIDS. In looking to the future of my baby grandson and his friends, I strongly urged PACHA members to develop and initiate a strong nationwide prevention and education strategy that utilizes all forms of media so that the next generations will have less chance of becoming infected.
Scott: How do you think your participation in AIDS Awareness Day organized by NYAC (New York AIDS Coalition) and the training provided by NAPWA at AIDSWatch prepared you for your legislative visits in DC?
Wayne: The trainings emphasized concise wording and timing of your personal story to make the most effective use of your limited time with legislators. My previous legislative visits with NYAC helped me overcome any feelings of intimidation I had about participating for the first time on a national level.
Shaquan: I have participated for three years in local legislative advocacy efforts, so I felt well-prepared to meet representatives at a national level. The ongoing planning and preparation made me much more comfortable in speaking out about my disease and my experience living with AIDS. I was able to have my photo taken with actress and fellow activist Rosie Perez, someone I have admired for her long standing efforts to raise public awareness on HIV/AIDS. If I had not learned to speak freely about my personal story, I would have missed this opportunity of a lifetime! This feeling of self-empowerment has given me a sense of new-found hope.
Scott: Tell POZ readers what it felt like to tell your story to our policy-makers in Washington, DC.
Wayne: It was so empowering to have the ears of our representatives on a federal level! This is where national policy is being created. It was an occasion to be heard by those who can make a difference, not only in my region of Northeastern New York, but throughout the country as well. I was able to bring ongoing issues of stigma and disparities in care among minority populations to the attention of those in the forefront of the decision-making process.
Shaquan: I’ve finally had an opportunity on a national level not just to speak for myself, but also for others that are living with HIV/AIDS. I was eager, ready and determined to raise awareness for women who are homeless and living with AIDS in America. As a person living with AIDS, I was able to show legislators that as someone who has been homeless, I have had the opportunity to ’make it’ thanks to programs for housing services they created and continue to fund. Scott: Was there a special moment during your visits when you felt like you were really being heard?
Wayne: The NAPWA briefing and the PACHA meeting in the Eisenhower Building afforded me an understanding of the scope of the issues. But it was not until we arrived at the gate to enter the White House that the realization of the moment hit me. The security was very exclusive and very structured, but we were allowed through. We were part of select and privileged group and that I would be given the opportunity to speak on behalf of our Northeastern New York Region. It that was empowering and exhilarating. I felt like I was being HEARD. When I spoke out on disparities in rural areas and underserved communities I saw the attentiveness, heard the reactions and felt understood.
Shaquan: In Congressman Scott Murphy’s office with his legislative aide Morgan Jones, I was able to share for the very first time my personal experience being homeless. He acknowledged that Rep. Murphy was aware and deeply concerned about the subject of homelessness. I felt that his office recognized that there were multiple complex issues, including homelessness, that need to be addressed in the HIV/AIDS community.
Scott: What can you tell POZ readers about your experience at AIDS Watch that would convince them to participate next year?
Wayne: Being a part of a greater struggle to reduce stigma, disparities and new infections gave me a sense of self-empowerment I haven’t experienced since my diagnosis 25 years ago. Being involved at any level is important and collectively we CAN make a difference.
Shaquan: Between the positive feedback I received after my personal testimony at the PACHA meeting and the legislative visits, I felt I made a huge impact. I was told by a number of White House staff that they now had a face to place with HIV/AIDS in the minority AIDS community.
Scott: During a private reception to welcome NYAC’s new Executive Director, Brittany Allen, you had the occasion to share informally with Jeff Crowley, James Albino and some of the PACHA board members. What was it like having an opportunity to speak with someone who has the direct ear of the President?
Wayne: As a follow-up to the ONAP call, it was a great sense of relief to speak with Jeff Crowley and to know that he had a real understanding of the issues of rural America. He was sincerely concerned about rural PLWH/A access and linkages to regional AIDS services. It was exhilarating to be part of the process, to know that we were connected and making connections.
Shaquan: You never know how you come across. You always wonder was I too hard, not hard enough, did they get it? It was incredible to have time to talk informally with Jeff Crowley and James Albino, to be reassured that what was said needed to be heard. And that it was heard. It was encouraging to know that the Government is on the same page and that we all want to move forward collaboratively. As a single black woman living with AIDS it was heartening to see that they were sensitive, understanding and respectful of the difficulties I have faced and are committed to supporting and seeking ways to fund vital programs.
Since our initial diagnosis, each of us has traveled our own personal journey with HIV/AIDS. NAPWA trainers have always insisted that our own personal stories have the greatest impact on our policy-makers. We must share our journeys, explain how they relate to legislation and guide legislators in making program and funding decisions. The leaders we met were gracious, intent and focused. They heard us and understood us. They need us and we need them to be connected.
I believe these ’newbie’ advocates have truly realized the positive effects self-empowerment can have in regaining control of one’s own destiny!
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