While covering the AIDS community, I was introduced to the hemophiliac community, through Dying in Vein, a book by Stacy Milbouer and Kathy Seward MacKay. I had the chance to learn more about hemophilia through my interview with writer Milbouer and photographer MacKay for A&U Magazine. I called the Q&A article "Blood Relations" and posted it below.
As always, thanks for reading,
by Alina Oswald
Originally published in A&U Magazine--America's AIDS Magazine
An interview with photographer Kathy Seward MacKay and writer Stacy Milbouer about hemophilia, HIV/AIDS, and their new book, Dying In Vein.
Of all the HIV “high-risk” groups, hemophiliacs arguably received—and continue to receive—the least amount of media attention. Despite that, the hemophilia community and its experiences with surviving loss and grief, and finding hope, has inspired many artists. Photographer Kathy Seward MacKay, writer Stacy Milbouer, and art designer Kathy Bouchard are three of these artists. Their book, Dying In Vein, is a collection of candid moments, captured in pictures and words, of only a few of the thousands of hemophiliacs infected with HIV and hepatitis C virus through tainted blood products.
As Stacy Milbouer explains, choosing the most representative subjects for the book was a difficult task because they all had interesting stories. It was important to show the reality of the situation, “not sugar coat [it], while showing that it’s not all bleak,” she explains.
The tainted blood crisis left an un-erasable imprint on MacKay’s life, taking away her husband—David MacKay—who died of hepatitis C at the age of thirty-three. Early in her career as a photographer, MacKay started to work on several health projects with writer Stacy Milbouer. They’ve been friends and collaborators ever since.
While the two artists talk about their experience of making Dying In Vein happen and share their thoughts on tainted blood crisis and HIV/AIDS, MacKay also comments on the effect the two crises—tainted blood and AIDS—had on her personal life.
Alina Oswald: What is the idea behind Dying In Vein?
Kathy Seward MacKay: My husband died in June ’97. The idea for the book came late Fall ’98. I started to work on it in January ’99. It was an overwhelming task, especially as a single parent. Stacy joined the project two years ago and conceptualized the way the book will look like.
How did you find and choose your subjects?
Right after my husband died I was not connected to the hemophilia community at all. Ten thousand other hemophiliacs in the U.S. infected with HIV and I’d never met a single one of them.
Then there was some legislation that was introduced to compensate the families of the victims….I just started networking and meeting a lot of people by lobbying, visits to Washington, D.C., the organization called the Committee of Ten Thousand (COTT) [www.cott1.org]. When I went on my first trip, there were hundreds of people out there who were just like me. Through them, I made some really good friendships and got to know people. I would just meet people and then someone would say, ‘Oh, have you photographed Ken Baxter? He protests in front of Bayer Pharmaceutical every month.’ So I called Ken out of the blue.
I would look for people who might have interesting stories to tell and would want to open and share their stories. I probably did solid shooting for two to three years. About that time I was constantly meeting more people; it was kind of a snowball effect.
What was your experience working with your subjects?
[Hemophilia] is one of the stories of the AIDS epidemic stories that hasn’t really been told. People felt betrayed. Ninety percent of the people agreed to let me into their lives, eager to tell their stories. Some of them were in their closet. Lots of the interviews turned into friendships and allowed me to know the people and get certain candid moments that otherwise I wouldn’t have gotten from people who lost a loved one.
The one shot that was particularly hard to take…a shot of Steve Savoy, near the end of the “Afflicted,” [taken] six days before he died. Stacy had written a paragraph on him, we had four pages on him. I didn’t know if [his wife] Kathy, who is one of my closest friends right now, was going to let me photograph him or not, but she thought it was important. It was the most difficult picture I took in my life.
One beautiful thing that I saw in the subjects: They saw AIDS as a whole picture and it shaped their lives. Others are doing a lot of outreach work with AIDS foundations.
Persecution, harassment, stigma, phobia—they all affect your subjects’ existence, sometimes even costing them their lives….
My husband was in the closet. He was a schoolteacher. He feared that people would find out and he would lose his job. The closet may have helped in a way, but it was a tough thing and he couldn’t be who he really was; he tried to live in denial.
I met a few people who asked if we [MacKay and her two sons] are okay. We are. I have a moral obligation to try to do something about it, not that that would change the world. I thought best thing to contribute was a book—it has been a positive experience.
Why mostly black-and-white photos?
Black-and-white conveys the mood of the story. When I met Ken [Baxter], I decided to use that photo in color for dramatic effect. Originally, I wanted Ken in color on the cover. It was a surprising effect, mimicking his techniques; red is significant. He’s been on a mission for a long time, inspired by the death of friends around him. The last pictures are in color because color gives a positive, uplifting attitude.
What about the tainted blood crisis?
The blood supply is fairly safe right now. Still, infections with HIV/hepatitis through tainted blood are still happening. It is important for people to have their personal responsibility. Stay vigilant.
The politics of health do concern us—mad cow disease, Vioxx. It should be a wake-up call. The problem is: What’s the next blood-borne disease?
For more information about Dying In Vein, visit the website