It was 25 years ago this month that my world was turned upside down with the news that my former fiance, Joanne, had tested positive for AIDS. A month later I tested positive for HIV and was propelled into a lifetime of decisions resulting in acceptance of change, something I had long resisted.
This reflection on change was initiated while reading Shawn Decker’s’ article "The Importance of Remembering Ryan White" (POZ- 9/2010), and enhanced further by two recent disappointing developments.
While reviewing the heroic life and times of Ryan White, regarded by many as the first in a long line of AIDS warriors, I was reminded at how far I had come in my own progression as an AIDS advocate. At a time when a majority of us hid behind the threat of stigma and discrimination that has defined AIDS, Ryan stood tall before the media to help raise awareness and earn what little compassion our nation could muster over this leper like deadly disease.
However, it took louder voices and outrageous acts of civil disobedience to shake up this nation to the realities of AIDS. First, that anyone could be infected. Secondly, that being infected meant a death sentence.
Groups like ACT UP and its’ offspring, which sprang up from coast to coast, helped to bring forth the Denver Principles and create the urgency for research for the life saving meds that would eventually change the attitudes of those who personally benefited and the mindset of those responsible for funding our treatment and wide range of services.
After Joanne died of AIDS in 1989 I was left to deal with my eventual fate on my own. Like so many who faced isolation issues with this disease, I ventured into self destructive actions to try to cope with my loneliness.
To add additional fuel to this fire, my father lost his short lived battle to Lou Gehrigs disease. As my business partner and mentor, as well as the rock of our family, his loss compounded my sense of grief and loss, spiraling me into a period of deep depression.
With the sole responsibility of running the family business and a single parent household staring me squarely in the face, the urgency for change overcame my further decline into a self destructive lifestyle.
Acceptance breeds opportunities for change. As fate would have it, a chance meeting of a former member of ACT UP LA, who by then was confined to a wheel chair, led to his recruitment of me to become his eventual successor. From his experience he understood the need to organize area consumers to instill our voice in the service delivery process.
This became one of those defining moments of acceptance of change that catapulted me from hiding behind the threat of stigma, directly into an 18 year career of as an aids advocate.
Here in New York most advocates began their involvement through membership in their area Ryan White HIV Care Network, a consortia of area consumers and AIDS service providers. The funding of these networks originated from the Ryan White Care Act, the federally legislated by-product of Ryan’s’ raising of awareness and the desperate screams of AIDS warriors demanding a response to the death and devastation affecting our nation from this epidemic.
In my 10 years of attending AIDSWATCH, our number one priority has always been advocating for adequate funding for the multiple facets of the Ryan White Care Act.Unfortunately, the combination of a failing economy and the lack of urgency in finding a way to halt the spread of the epidemic has resulted in a devastating impact. Funding for the Care Act and its’ supportive services is failing to meet the needs of those it was meant to serve. This is due in large part to platforms of the republican party that support the belief that HIV/AIDS is no longer a threat to our nation.
The recent choice to dismantle Care Networks here in New York and several supportive service programs across the country, has left AIDS warriors wondering where is the sense of urgency on the part of consumers who choose not to be engaged. And as more projected supportive service consortia dissolve, how will consumers who wish to get involved find those remaining consumer groups?
As our networks near their expiration date, I am fearful that myself and other consumers will once again experience a sense of isolation. Loss of network visibility and structure will require an acceptance of change on the part of both consumers and service providers and a spirited dedication to continuing to remain a viable voice in the future.
Just as disturbing for AIDS warriors familiar with the politics regarding AIDS funding and related legislative issues, are the results of our most recent general election. You would be hard pressed to find any advocates who wouldn’t understand the repercussions of the republicans recapturing the House of Representatives and what that will mean to the future of increased funding for the Care Act as well as the recently developed National AIDS Strategy.
Therefore I wasn’t surprised with the recent blog posting from Regan Hofmann questioning the timing of White House invited Charles King’s’ outburst during President Obama’s unveiling of the National AIDS Strategy. Weeks before the election AIDS advocate’s also disrupted pre-election democratic candidate rallies attended by the President.
I understand the frustrations of Charles King, whose organization Housing Works protests on a daily basis various AIDS related deficiencies across our nation. King, who I have marched with during C2EA, heads an organization which promotes the use of ACT UP like forms of civil disobedience. If our issues are to remain on the forefront of political concerns, we will need the continuous actions of Housing Works to keep AIDS in the faces of our lawmakers.
What I don’t get is why these protests were directed at democratic events and not at republican candidates who represent the party which has put forth the least response to curtail the spread of HIV and the most resistance to funding our care and survival.
These past two years were not the easiest to obtain adequate appropriations for anything in this troubled economy, especially while republicans were holding the “filibuster” card.
However, democrats did push through health care reform, lifted the HIV travel ban, and the ban on federally funded needle exchange programs. And we now have a formal National AIDS Strategy.
Although this should have been a year to celebrate our successes, republican control of the House, as Regan stated in her blog, translates into further cuts to research, prevention, and our critical care. I would hope that Charles King, Housing Works, and other AIDS advocacy groups begin to redirect their efforts and frustrations toward the new Speaker of the House with the same enthusiasm and in your face anger as they did toward President Obama.
Once again I must learn to accept the changes that have occurred to the make up of our congress and the potential for future funding cuts. More importantly, with the dissolving of the networks, I will need to learn to adapt to another loss, and commit myself to the preservation of our organized and engaged consumers.
Have a Happy Thanksgiving,