I Know. I Took The Test: Stories from the Southern AIDS Living Quilt

Interview of Patrick Packer by Jennie Anderson

In this week's post, I'm excited to share with you HIV testing stories from the Southern AIDS Living Quilt and my recent conversation with Patrick Packer, Executive Director of the Southern AIDS Coalition . As we mentioned last week, this month leading up to National HIV Testing Day (NHTD) on June 27, we're writing the “I Know. I Took The Test” blog series about personal HIV testing stories. We hope you'll also share your story (in the comments section) about what getting an HIV test meant to you.

• What inspired you to start the Southern AIDS Living Quilt?
  The Southern AIDS Living Quilt was launched in October of 2008 by the Southern AIDS Coalition to raise awareness about the spread of HIV and AIDS, particularly among women in the Southern U.S. The South has the highest number of adults and adolescents living with AIDS in the U.S.. In addition, HIV/AIDS is currently the leading cause of death for black women between the ages of 25 and 34. The Living Quilt uses personal stories to highlight the need for routine testing and prevention services, early diagnosis, and increased access to care for those living with HIV/AIDS in the South. A goal is to let those that are positive know that HIV today is a disease you can live with if you take steps to take care of yourself and your partner.


• 
  Why are you using new media to share those stories?
  We wanted to move beyond the numbers and data, putting a face to these figures. The video “patches” are a powerful means of reducing stigma surrounding the disease. The videos show the changing face of HIV and demonstrate the fact that anyone can contract the disease – the HIV positive faces on the Quilt could be your mother, sister, co-worker or Sunday school teacher. The goals of the Living Quilt are to empower, encourage and educate policymakers, healthcare providers, the media and the communities most directly impacted by HIV/AIDS. Using video testimonials, we share the stories of women living with HIV/AIDS, their families and healthcare providers.


• What have been a few of the most powerful results so far?
  The Project started (in 2008) with 30 “patches” (on a virtual quilt ). Within days, we started to get emails and calls from women that wanted to share their stories and experiences. Today, the Living Quilt has more than one hundred patches from HIV-positive women, medical professionals, community leaders, HIV/AIDS Advocates, a CNN Hero, and state and government health officials. We have presented at events across the country, and last World AIDS Day, HIV journalist and advocate Allison Steinberg called the launch of the Living Quilt one of the “10 most important AIDS stories of 2008.” A Los Angeles-based musician composed and donated an original hip-hop song for the Living Quilt that has been made into a video . In May we posted our 100th “patch”, featuring Frances Ashe-Goins , Deputy Director of HHS' Office on Women's Health.


• I Know. I Took the Test.
  Blog Series

  • National HIV Testing Day: Call to Action
  Where would you like to see the project go next?
  While 100 patches was a great milestone, we want to grow the number and diversity of voices represented on the Living Quilt. We want visitors to say “she looks just like me, or my mom, sister, co-worker, or friend,” etc. We'd like to capture the stories and messages of national leaders and be a part of the national movement. We want the Living Quilt to become an even more valuable resource through linkages to educational programs, assistance, and care. And we continue to think of new ways to attract young people to the site through Facebook , Twitter , and other social networking sites.

Thank you Patrick and the Southern AIDS Living Quilt team! The Living Quilt invites people to submit additional stories . Check out our NHTD story widget to see their videos and add it to your site! Looking for your local HIV testing center? Send a text message with your ZIP code to “KNOWIT” (566948) or visit www.hivtest.org .

Have a comment about a Southern AIDS Living Quilt story? Have you been tested for HIV and want to share what it meant to you? We welcome your comments in the comments section below.

Want to know what story initiative we're talking about next? Check back on Thursday!

Comments

[Andrew Wilson]

I really enjoyed these videos and learning more about the Living Quilt project. One thing I'm curious about is how you recruited people to participate and share their stories. How did you reach out to those in the first group of 'patches'?

Thanks and keep up the great work.

Andrew

[Hermel Hooten]

I know this i great to know someone cares..I want all the info i can get Ihave full blown Aids since 1993..Anything i can help with please use me..Thanksw Hermel

[don warner saklad]

Post sex STD tests are a strategy--but what do they cause a person to do? Give up sex? Have less sex? Have more sex in order to "get even"?

Testing before sex is a way to keep some sex from happening, and, consequently, prevent an STD. Post sex STD tests don't do that. Pre sex STD tests will save some lives--some people will back out of the possibility of sex with that partner. Others may be way more cautious. Still others might wait for non-HIV STDs to be cured, if available.
http://notb4weknow.blogspot.com

[George Maris]

Today is National HIV Testing Day,in recognition of this day people across the nation are getting tested for HIV. I once posted a question, when do you tell your partner your HIV status? I received many answers, but the one I was looking for is I have to get tested before I can discuss my status with anyone.
I believe the conversation would be awkward with out this vital information. The theme for this years event is Take Control Take The Test. It's important you know your body.

[Omer]

These stories are very touching. I went out and got my self tested as well. Hopefully these terrible ailment will be cured within the next 20 years.

[Charley @ New Hip Hop Music]

The Living Quilt Project is absolutely incredible. With that said, it is more important than ever today to get tested for HIV. Not only are you protecting yourself, but also your loved ones. These stories were excellent.

-Charley Brown

[Confidential]

Letter from:
Hello, my name is Confidential and I am a student at the University of... I recently came by the clinic to be tested for HIV, and, I have never been through such a powerful experience of apprehension, worry, fear, and then immeasurable relief that I tested negative. What impressed me most of all, however, was the way in which everyone in your office, especially the man who tested me did an incredible job of calming me and making me feel comfortable. Had I been in the unfortunate situation of receiving a positive test, I know that I would have been in the right place with the right people to hear that news.
Getting tested and getting your results should be an educational experience.Know your status early testing = early treatment,treatment involves behavioral changes.