Here’s what some visitors to POZ.com have had to say about Sean Strub’s World AIDS Day speech:
Kudos to you, Sean! You managed to not only vocalize the frustration that many of us in the HIV community have felt for years, but brought clarity to these issues as well. You asked, and even answered, many of the same questions that I have pondered. “[w]hy have our leading AIDS organizations mostly abandoned grassroots activism?” Is it merely a lack of desperation and urgency? Is it the fear of losing funding by taking an activist stance? Those that feel no sense of urgency today are apparently not students of our political system. We are currently in imminent danger of losing many of the rights and benefits that our“community” fought so hard to win. You are absolutely right—the stakes are “more urgent and desperate than ever.” We, as a nation, as a people, as a movement, are allowing the current administration to define the agenda, which allows them the freedom to make damaging policy. Their “Orwellian logic,” what I referred to in an article recently as “doublespeak,” has permeated our society. In a rush to embrace “morality” and so-called “family values,” our society has forgotten to explore their true meaning. Anti-science? As we approach the year 2006, surely this can’t be a value our society wishes to embrace.
My recent involvement with, and continued commitment to, the Campaign to End AIDS was borne from my own sense of frustration with the status quo. I’m tired of “a presidential theocracy that is pushing its morality on America.” Sean, you are absolutely right. “None of this is about promoting public health.” It is about power, pure and simple. But I’m also tired of being a “token” for the latest round of grant funding, tired of ASO’s and CBO’s that are more concerned for their own power than they are for the quality of our lives. I’m tired of our empowerment being “a slogan rather than a system.” The Campaign to End AIDS (C2EA) attracted me because it tied the issues of poverty, civil rights and social justice.It showed that WE can define the public policy debate surrounding AIDS.
Just as we can no longer afford to allow right-wing moralists to define the political debate and dictate AIDS policy, we can no longer afford to allow timid AIDS service organizations to stand by and fail “to address the emerging crisis.” Just as our collective empowerment once gave us“the political muscle to force change,” it can do so again. Let’s all flex our political muscles NOW by joining, endorsing and becoming involved again in the decision-making processes that directly affect our own lives. Again, I concur with your message. Only TOGETHER can we reverse “the disturbing twin trends of increasing stigmatization and decreasing empowerment.” Let’s once again embrace the Denver Principles as our mandate.
“…And how can I ‘Embrace Life’ when last month, Gary Carriker, a gay man living with HIV in Georgia, was sentenced to several years in prison. His crime? Not disclosing he had HIV to sexual partners. None have sero-converted. But that didn’t matter. Nor does it matter, under Georgia and other states’ laws,whether condoms were used. Or how risky or safe their activities were….”
Somebody takes an AK-47 and fires a clip into the air in random directions. If none of the bullets hit anyone or damaged anyone, you wouldn’t put him in jail, would you?
I think you’re on the wrong side of this issue.
We could wipe out the epidemic by the strategy of let’s get tested together before we have sex... for sexually transmitted infections.
Here’s a collaborative blog and a collaborative wiki about the strategy:
Don Warner Saklad
Itis a very powerful speech that has enlightened me, who works in the HIV/AIDS field. I was unaware of the Denver Principles, but that makes a lot of sense. Even though I am HIV negative, I am dedicated to working in this field.
I too share Sean’s concerns about the direction of HIV/AIDS programming under the Bush regime. Mr.Bush’s AIDS initiative does not impress me except for the fact he has funded AIDS programs in Africa simply because most people affected with AIDS in Africa have been heterosexual. However, I think Bush has done a lousy job of funding in the USA and his abstinence only dogma is a complete turn off, a waste of resources and is not scientifically sound.
Again, thanks for reminding us where HIV/AIDS really stands in 2005.
Bernie Berger, MSW
Black Coalition on AIDS
That was an excellent speech. I remember the Denver Principles, and they helped empower me when I found out my status in 1987. Sean is so right. Unfortunately, it seems that organizations like APLA really don’t care about client representation on their boards. They really aren’t even about client empowerment, as far as I can tell (which is why I’m not involved with APLA anymore). It’s more like a parent/child relationship, where the clients are supposed to be the grateful kids who are so lucky that parental APLA et al “takes care of them.” Give me a break. I hate to say it, but when these agencies were mainly serving gay men, I think there was much greater client representation. I think the mainly Black and Latino populations they serve now are not even empowered in society, let alone the HIV agencies they get services at.
Ok, I’m done ranting.
I just read the speech by Sean Strub and have recently become acquainted with your organization. I have been living in Croatia for three years and have been diagnosed for one year now. I completely understand the stigmatisms associated with HIV. Although we know now that HIV is not a gay disease anymore, the perception here is that if you are HIV, you are gay and against God. I myself am going to prison and being deported. Not because I am sleeping with anyone, but because I had a few bisexual experiences several years ago and my now ex-girlfriend and high-profile attorney and her partner have brought me up on false charges of extortion and are sending me to prison. The life I had one year ago is all gone. I don’t feel any differently. I am still healthy.I am not sick. I tell people that having HIV is not a death sentence.That having cancer or diabetes can be worse, but the stigmatism is still there.
And therein lies the problem. People with HIV are not supposed to be different anymore. HIV organizations don’t have to need board members with HIV anymore. It is just business. I personally have asked for assistance from every Human Rights and HIV/AIDS organization I can find to help get my passport back and keep me out of prison and the answer is the same. Sorry, discrimination of those with HIV is no longer considered Human Rights violations because it’s not supposed to “be” a Human Rights violation anymore. We have learned tolive with those with HIV. Therefore, we have lessened the need for action.
I am not sure what will happen to me. I am lending my services to organizations to educate people about those of us living with HIV. I have not heard from anyone yet. HIV is like cancer. If you don’t have it, no one wants to discuss it. I will do the same with your organization in offering any help I can do on the Eastern European front.
Brilliant. Tragic. Perfect. Truth.
Susan MacNeil, Executive Director
AIDS Services for the Monadnock Region
Sean Strub’s article makes some good points but contains an error. FDA did not bend to religious conservatives in its condom labeling proposals. A guidance and a preliminary rule were published on February 14 that—to FDA’s credit—confirmed the effectiveness of condoms to prevent HIV transmission and specifically rejected the idea that condom labeling should mention alternatives like abstinence methods. In this case, FDA seems to be on the right track.
The proposals are on the web:
I think Sean’s speech is an example of magical thinking.
Unfortunately,the problems with the AIDS industry are much larger and much more embedded than his speech acknowledges. Having seen positive people embroiled in financial scandals and scams no less so than negatives in local ASOs and having witnessed positive folks trying to bully providers into giving out Kemron a decade ago by claiming more authentic expertise, increasing the involvement of HIV positive people is no guarantee of any basic change.
Sean’s message is so timely. As much as Vito Russo’s comments from May, 1988 about how people don’t ’give a shit.’
Sean got me to ask what the makeup of Test Positive Aware Network’s staff and board is. I remember when it was ALL peer-lead and the building was packed on any given Saturday. Now, with over 20 staff and closed weekends, AIDS Inc. has taken over.
I also did a search on media coverage for World AIDS Day events in Chicago’s media. The Chicago Tribune had one, count ’em, ONE story on AIDS, in the Sudan.
That and ADAP, RWCA and Part D for Disaster are why we are restarting ACT UP here in Chicago!
Thank Sean for Acting out.
I couldn’t agree more with Sean Strub’s World AIDS Day address on thelack of positive folks on boards (and staff) of AIDS organizations. The Medicare Part D Prescription Law is a prime example of how lack of representation is harmful. In an attempt to do something for seniors,we have a deeply flawed plan that negatively affects people living with HIV/AIDS. “Our” organizations came into the conversation much too late or not at all—not seeing it as a problem. The real problem is that our national organizations & coalitions do not speak for us. But unfortunately policy makers & the press see them as the grassroots.I’m suggesting we put our attention to local organizing of PLHA’s and support the National Association of People with AIDS (NAPWA). They are the only national organization that can speak for us.
San Francisco, CA
Regarding Sean Strub’s commentary on what is wrong with our movement: Kudos toyou Sean! You have hit the proverbial nail on the head. I am currently working on an article regarding the Lifelong AIDS Alliance here in Seattle. I will forward you the text when complete.
I just want to make a few comments on the article “What’s Wrong With Our Movement” by Sean Strub. I found it a good editorial and obviously fustrating for Sean, and I have also seen various AIDS Service Organizations in multiple cities over the last 4 years who almost always “stink.” Case managers, social workers, etc.... have been the same, from below average to failures. It is not hard to keep “UP TO DATE” and very sad when a client has to inform them of changes, and they claim they “DID NOT KNOW”? Not good!
I loved Sean Strub’s article “What’s Wrong With Our Movement.” I love POZ Magazine and am very grateful to everyone involved with it. But one thing—a very important piece—was missing from Strub’s speech:Personal and social responsibility on the part of people with HIV.
All these nightmare Republicans and religious fundamentalists—they represent a huge number of people and we can’t just demonize them. We need to reach out to them, talk to them, and try to find common ground.
And one thing that is essential for this common ground to be found is for HIV+ people to convey to all of the right-wing that HIV+ people support personal and social responsibility—including the absolute necessity of disclosing HIV status to all sexual partners. That is 100%MY responsibility. Just as it is 100% the other person’s responsibility to ask me.
It is horrible that that man got several years in prison in Georgia for not disclosing, but it was criminal that he did not disclose, and we need to let the wider community know that we condemn that kind of irresponsibility. The fact that none of his partners tested positive isno thanks to him. (I don’t know what the appropriate punishment is for that, but certainly public condemnation.)
We do need empowerment (I’ve been positive since dirt) and support and representation on these boards, but we also need to take responsibility for our actions and do all we can to halt the spread of the epidemic.
All the publicity about bare-backing, crystal meth, older long-term survivors losing their will to keep practicing safe sex—this is fueling the right-wing’s agenda. We cannot hope to combat their hatred and demonization of us unless we make it very clear to them that we are committed to being responsible and halting the epidemic. I don’t mean abstinence, but disclosure is absolutely non-negotiable. Sean’s wonderful speech was fatally flawed for wide distribution by this oversight.
Lots of unconditional love,
My name is Jessica Mardis AKA “Gabriel’s mom.” I was very impressed with the article written by Sean Strub. I just recently became involved in OUR movement after attending the C2EA event and I am full force ahead. I am already involved in C2EA for the upcoming events and a member of AAIM (AIDS Action In Mississippi). I think it is important for us to speak out and get people involved. I hadn’t checked out the POZ website before now, but I am soo glad I [did]. I am now a member of POZ personals and I truly enjoyed the website. We need access to accurate information. I also truly believe as positive people we are more qualified to bring that knowledge to others. I am so glad me and my son Gabriel went to DC. I look forward to doing more in the future for “my cause.” I also look forward to the article that will be out in January with the interview I did with POZ magazine. So, to RAP IT UP,please keep up the great work.
WOW Sean Strub, what a great article on What’s Wrong With Our Movement. You hit a lot of issues on the head. I have been volunteering with organizations near my home town—I go to test sites and help with that. I find it strange, almost like a witch hunt. “How many positive people can we get here?” The more the organization gets, the more that their grants and other [projects] will be renewed. I have made a decision that I no longer will get up at 7am and go out on ”the witch hunts.” I am HIV positive and not very well liked in the area of the so-called HIV community. I am very vocal and this is a no-no!!!! Due to the fact that positive people in this area still are mostly in denial. This is due to all the things that you listed. Churches turning their backs,political leaders turning their backs. In my eyes, they just don’t give a damn. The State of Tennessee has been blessed to have had Ryan White funding and will have it till the first of 2006. I urge people to write the policital leaders that are involved with funding. I get this back from some people that are big in the so-called HIV community: "We should not be concerned about funding, we are OK in the state.” What narrow minds people have. If one state or one person does not get their needs met, it SHOULD hurt us all. I have also noticed that organizations want positive people’s input, but the input has to be on their terms. It breaks my heart and angers me when I go to World AIDS Services and see at the most 75 people in attendance. This alone should show that something is not right. It also breaks my heart when I hear from the state that HIV cases are on the rise. So where does one voice in a crowd of many stand? That is the question that I have to ask myself. Do I try to work with people that do not see the whole picture or do I give up on [this] type of movement? I, like some, do not want to be able to state that I did this and I did that for the HIV/AIDS problem, because it means nothing. Like [someone once said], if you are doing it to put it on your resume you are doing it for the wrong reason.
What did you think about Sean’s speech? E-mail us at firstname.lastname@example.org and let us know!
Reader Feedback On ’Our Movement’
Here’s what some visitors to POZ.com have had to say about Sean Strub’s World AIDS Day speech: