We are fortunate to have an ever-growing number of participants in the Carnival. This month we are pleased to welcome several new blogs and bloggers to the dialogue about AIDS and the people and communities that are affected by HIV/AIDS. In addition to several contributors from the US, we have contributions from central Asia, southern Africa, Canada, and Mexico. The topics covered by these articles show the diverse responses to the epidemic around the world at the same time they reveal the commonalities of people, places, and problems.
In many parts of the world, people affected by AIDS have no voice with which to speak to their families and community much less the world about their fears, their suffering, their hopes. This is due in no small part to the strong stigma attached to being HIV-positive, which stifles their voice and condemns them to silence. It is also due to the lack of tools to help project one's voice to those who need to hear it.
Cristi Hegranes writes in "El banco" about the day she took five women to a bank in Chiapas, Mexico, to open their first bank account with their first earnings. As Hegranes' post shows, having a voice is important on many levels:
"maria antonieta, “tonita,” was first. she is so quiet. sitting right next to her i could barely hear her speak. i think she was nervous b/c she doesn’t have a permanent address and she was using a copy of the gas bill from our office as proof of residence. she was asked a million questions, each reply came in a whisper until she was asked for her occupation — “SOY UNA PERIODISTA,” she bellowed. when asked for her place of employment she whipped out her new press pass and declared just as loudly “EL INSTITUTO DE PRENSA PARA MUJERES DE MEXICO.”The Press Institute for Women in the Developing World trains women to become reporters, focusing on six core themes, including AIDS, violence against women, reproductive rights, poverty, political oppression and community development. Those who have something to say about AIDS need a voice; having voice, the benefits accrue to them as well as to their audience.
Blogswana describes itself as "Botswana, AIDS and Blogging." Brian has an August post in Blogswana which incorporates Ron Hudson's "En-COURAGE-ment to Blog for HIV/AIDS," and makes the case for using the voice that we have:
The act of speaking out in your own voice requires courage and strength of character and a strong desire to be heard. For many living in the world [of] HIV/AIDS, our voices have been silenced by fear, anxiety, social stigma and threats of death or injury. Now more than ever, we need to speak out and let the world hear our voices.Not so long after that, Brian posted a lengthy list of "Botswana Blogs," several of which focus on AIDS. Given the tools, it's clear that there is great courage in the HIV/AIDS community.
In yet another take on "voice," Jody Kuchar writes about "AIDS WALK 2006" in Gray Matter Flatulence. She writes first about her participation in AIDS walks in Milwaukee and the vicious tactics the "Christian right hate groups" used to intimidate walkers and disrupt the event. Kuchar talks about her reaction to these tactics--anger, not fear--and her decision to put her time and energy into volunteering at a hospice. Still she questioned her decision:
Whenever my husband and I went to serve dinners or help at hospice, we did do good work and were appreciated for it. But it was silent work - we educated no one, we did not alleviate intolerance or hatred.Now living in Indianapolis, Kuchar is once more determined to make her voice heard: She will walk in AIDS Walk 2006.
Life after AIDS
By now, most of the world has come to the realization that there really is life after HIV and even life after AIDS. Given the fairy tales found in some pharmaceutical advertising and the distortions of media reports, it is no wonder that many have no clue what that life is like.
Ron Hudson has an "official" contribution to this month's Carnival, but I couldn't pass up his poignant description of "Clearing Out Your Closet." When he first sent me the link to the article, I thought it was going to be an essay about clearing out the mental clutter that keeps us from focusing more clearly on the task before us (which shows you what I need to be doing). Instead, it is a reminder that we all must cope--somehow--with life after AIDS.
Written for this past World AIDS Day, Ron's post is a different take on "the Day" and what it has come to stand for. Positive, proactive, inspirational slogans do help motivate us to keep going, to keep doing the work that we do in prevention, care, policy. All the slogans cannot, however, cover up the underlying grief and loss that we all must feel when World AIDS Day rolls around, when we open the doors to the closets of our memory and do as Ron did:
I sat on the bed and watched. He opened the door to your closet and started removing the clothes that hung there, one hanger at a time. He would hold the shirts to him, breathing in deeply to find a hint of your smell.AIDS still kills. Part of the horror is that some of us have to keep on living with the loss.
The Dreamer writes about a different way that those living with HIV must cope with that life. "Mangled in the Medical Machine - 2" is the second part of a three-part series on the nightmare that comes with needing surgery when you are HIV-positive. His blog, appropriately enough, is called Nightmare Hall.
The Dreamer chronicles in vivid detail his medication regime and the effects it has on his HIV disease as well as the debilitating side effects. As the side effects get worse, it is his chronic pain which begins to take over as a major health concern.
By June of 2005 my doctor decided to take me off all meds for an extended [trial] period since my counts [had] remained excellent for so long. The neuropathy [had] grown almost unbearable and my left leg was withering away faster than ever to [where] I was losing my balance and now the right leg began wasting faster and faster....In July my weak leg gave out under me and I fell backward fracturing my spine to boot.The tendency in the healthcare system to blame every illness on HIV rather than look for other causes, the truly experimental nature of HIV treatment for individuals, the increasing need to know one's disease and to reverse patient-doctor roles by becoming the one who is knowledgeable about treatment options--these, too, are part of life after AIDS.
High Fiber For The High Fiver is LWood's blog, a delightful take on living with HIV and, as he says, "the way I like to play with labels." I won't give it away, but "Happy Valentines Day (non negatively)" will make you smile.
The CDC has finally stopped teasing us and issued its recommendation that HIV testing should become a routine part of health care. While I've had my own (cautious) thoughts on the subject, two of our contributors this month chime in with their own thoughts.
Nels Highberg's blog is called A Delicate Boy . . . In the Hysterical Realm. In "Testing, Testing . . . ," he pushes the "on" button and starts listing his concerns about routine testing. He moves from lack of consent to skewed counseling to increased stigma, the latter, I might add, despite the CDC's professed belief that a policy of routine testing will reduce the stigma surrounding testing. Highberg continues with concerns about insurance, criminalization, and--my own hobby horse--the overburdened, underfunded system that provides care for those living with HIV. As Highberg says of AIDS service organizations:
They don't get the money they need to do they work they want to do. And these new guidelines mention nothing about increased services.Word.*
Walter Senterfitt, in a guest post at AIDS-write.org, gives us "CHAMP HHS Watch--A Test of Our Commitment: What would it really take to fix HIV testing?" Senterfitt tosses out a breathtaking array of facts and research findings, all to say "The fix is not in." His argument carefully grants some validity to CDC's proposal for routine testing at the same time he places that proposal in the context of a long line of failed panaceas proposed by the CDC and points out some serious gaps in the proposal.
Senterfitt's own proposal? Comprehensive operations research on the effectiveness of these guidelines at the same time they are being promoted and implemented. He asks:
wouldn’t it be great it we could turn this next period of predictable resistance and confusion over implementation into a real dialogue among the feds, the docs, the healthcare execs, the community-based organizations serving high-risk communities and the people living with hiv to come up with a comprehensive plan to offer real treatment and real prevention for everyone in at country with, or at risk for, hiv[?]Brian Finch gives us "Nearly all HIV infections come from undiagnosed people" from his blog, Acid Reflux. In this post, Finch is looking at the role that the "unknowing" play in expanding the epidemic in the US. He adds some thoughts on the Canadian context and extensive quotes from an article about sero-sorting among HIV-negative gay men in Australia. Finch's post argues that:
Understanding who is more likely to transmit HIV helps us make our minds up on some of the contentious issues in HIV prevention like universal testing and sero-sorting, and the wisdom of criminalising HIV transmission, which tends to penalise people already aware of their HIV status.Prevention Messaging
The lion's share of funding for HIV/AIDS in the US seems to be spent on medical research and treatment. The pittance that is spent on prevention is shrinking both in proportion and in absolute dollars. These facts alone suggest that is becoming increasingly important to make sure that our prevention messages are crystal clear and effectively targeted.
In the Blog to end AIDS, Akira Ohiso looks at Ian Daly's "Whatever Happened to Safe Sex?" Ohiso reports Daly's conclusions, that "denial, fatalism of our current world climate, misleading media information, and the Bush administration's misdirected abstinence education assault" did in safer sex. Ohiso's own opinion:
. . . , the most egregious reason for the rise in STDs and HIV/AIDS is the religious ideological abstinence and anti-condom message of the Bush administration. The Bush administration and his right-wing gang will support millions of dollars in abstinence education, while cutting spending on prevention programs, fully knowing that prevention programs are much more effective.
Ron Hudson's official entry for this month's Carnival from his blog, 2sides2ron, is "Instructions on How to Use a Condom." As with the earlier essay on clearing closets, I was somewhat nonplussed. What on earth, I thought, was Ron going to say about condom instructions? Was this post even necessary given the abundance of information on the subject.
As it turns out, yes, the post was necessary. As Ron points out, in the context of the ongoing War on Condoms, a free and independent voice is needed to provide life-saving information to those who have been deprived of it or given misleading information. Ron's concern, too, is global: "I hope that this information reaches you in countries that have been forced to accept policy that has failed in the US as well."
Ben posts on neweurasia.net news of a regional HIV/AIDS conference. The existence of neweurasia.net provides another outlet for voice in a world where voice is frequently stifled as a matter of policy. This post focuses on the broad regional interest in HIV/AIDS and a shared concern that prevention funding be adequate to continue trends which, when compared to Russia and the Ukraine, are only "comparatively good."
Our last contribution, "Can," is from Rick Reilly. While this article, originally published in Sports Illustrated, is not a blog post per se, it gives a message that we can all use: Can! (Not can't). Read the article, watch the video (with plenty of tissues handy), and imagine: CAN!
And that concludes ICP-4. If you liked it, please consider linking to it from your site. The next edition will be published on or about November 10. To submit a blog post for inclusion, fill out the submission form on the ICP web site.
- "Doctors are not gods, merely highly paid troubleshooters of wetware." -- The Dreamer
- "I just don't think out culture should sugar-coat the realities of [HIV] disease. It kicks ass and hard and you better believe it." -- Ron Hudson
- "I bought into our society's message that gay equaled AIDS." -- Nels P. Highberg
- "AIDS seems to be a disease of 'those people' again." -- Nels P. Highberg
*Yes, I know that "nobody says 'word'" anymore. Meh.