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Giving Thanks for Accepting Change

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     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,
     Scott Daly

  
  

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Comments on Scott Daly's blog entry "Giving Thanks for Accepting Change"

November 21, 2010 1:37 AM
Great job Scott!! I like what you said about the protest, the facts and last years AIDS Watch. I agree, the protest should have been directed at the ones that have not supported us. I was invited to the unveiling of the new stratedgy, it was one of the most exciting days of my life. I met a wonderful woman from LA, the Magic Johnson foundation too and knew others there too that have joined our group for Advocacy in DC and Albany. I took some great pictures, ate some great food and listened as the President gave his speech. I also remember when Charles King decided he needed to ruin it by opening his mouth. I remember his stupid comments too over the speaker system during C2EA, that is another story, but this crap seems to follow him wherever he goes, because he does not have the brain to think before speaking. The President handled it very well though at the White House, but you know it is sad that that moment of his mouth yelling out really sticks in our memories. If it was not such a big deal, then we wouldn't all be discussing it still. I have advocated for years too and we have learned that its not about you as an individual, it is about the good of all, so instead of enjoying the moment, the dumb ass once again opened his mouth and put a blemish on the entire HIV community there.I can't believe that an organizations leader thinks he has the right to speak for everyone, when they really don't. I have seen who is at AIDS Watch and advocacy days and are in the trenches trying to help others and not just get another comment in the paper. I know people like Scott that know how to conduct themsleves professionally and I am very proud to work with them every year during AIDS Watch. I will not forget my experience at the White House,I felt very honored to be invited there that day, I hope I can go back someday, I do also hope that people like Charles King are not invited back at the same time,that I truly mean. It is somewhat like the drunk relative that the family wishes that they would just not come to family functions anymore. There is a time and place for everything, yes this is still the USA,yes everyone has the right to speak up,but at least have somewhat of a professional brain and think about others around you before blurting out crap!! But do it on your own dime not on the dime of people that scraped by to be able to attend. But too the President deserves more respect then that and those of us that spent our own hard earned money to be there deserve that respect as well. I have never had anyone act that way in ten years plus of doing this work. Scott couldnt be more right, when our Dem's were in office during President Clintons term and now with our current President, we do need more done, nothing is perfect and we are short on help for meds and care, but think about when our Republican officials were in office, nothing got done at all basically, we never even had an Office of National AIDS policy or AIDS Czar. We do need to ask for more, we do need to beat the bushes in many new ways. We are not alone on shortages, anyone can tell you that, no one is happy about the money lost for funding. But how about we come together like we did ten years ago to fight for our right to care and medications, I think the mass numbers of us would be helpful once again. A group of us years ago were told be a Congressional Aid that we were probably the one of the most powerful advocacy groups, but I doubt that can be said now. We dont get the huge numbers anymore to advocate. Instead we get people shouting crap in the East Room of the White House lol, I would think just being invited said something in itself, the President and ONAP get it and are trying, maybe we need more, but at least they are trying. We need to advocate, we need to maybe shout at times, but do it when it will truly make a difference and help, not like the drunk relative that nobody wants at family functions anymore.

Beautiful Scott!
We can hope that your words will stimulate others to take up action, unite and work towards a common cause.
Have faith, change can be rough, but sometime, just sometimes it brings about beautiful things.
Thank you for your energy, effort and dedication.

Thank you Scott for your great observations.

As a Ryan White Network employee I met so many amazing people with an inner strength that I can never aspire to possess.

Although the networks are being dismantled no one can dissolve my belief that these strong, positive individuals can man the helm of their own destinies and help to refocus public policy through education, advocacy and sheer determination.

As usual, Scott, you have put things so beautifully. I, too, mourn the loss of the Ryan White Networks, because I know how valuable they are. My hope is that there is another way for persons living with HIV/AIDS and providers to keep working collaboratively, and positively, together. I have always been so grateful for people like you in the Capital Region who can represent persons living with HIV/AIDS in a rational, intelligent, respectful (but still firm!) manner. I think that the only way that we can ask people to listen to us is to first show that we are listening to them, and you've exemplified that. Charles S would be so proud of you, Scott! Please keep on being the wonderful spokesman that you are. Times are hard and they are going to get harder, but as you said, you've not only survived, but thrived, through some truly horrible times in your life--it is people like you who have the life experience to help gude us through these next few years. All the best--Linda

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This page contains a single entry by Scott Daly published on November 14, 2010 2:51 PM.

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