January 13, 2009
I understand that you have a project where you work with dolls and women with HIV.
This project is called STITCHES and it was designed in July of 1999 for women living with HIV. The program began while Candice Moench and I worked at The Midwest AIDS Prevention Project, but continues now out of my house. For several years, Candice and I had wanted to create a project that combined art and life, as an interactive way to educate the community at large. Plus, we wanted to find a way to preserve the stories of HIV-positive women everywhere. So, the dolls in the STITCHES project are created by HIV-positive women all over the country and then returned to us to become part of a continuing traveling exhibit. Not only does this project give women a safe place to voice their feelings about how HIV has affected their lives, but it's also a gift that others can learn from.
|This is a doll named T-Bird. She was created by a woman living in Rivington House, a facility for women with HIV, in New York.||This picture is of me along with part of the large display of Stitches Dolls at World AIDS Day, 2004, in Flint, Michigan. The doll on the table in front of me is mine. She is titled, BOUND.||These dolls were made by women living in Loudoun County, Virginia. They decided to attach them all together to a quilt square.|
What were the first STITCHES workshops like?
The very first one was done at a local AIDS organization for women. I took some plain rag dolls, some scrap material and sewing supplies, glue guns, etc. I met with the women, told them about the project and offered them the opportunity to take part. They all were very excited. That day they began work on their dolls, but it required a couple months, while working with a social worker, in order to finish the dolls. I returned and the women presented their dolls to me. They told me about some of their feelings while working on them. Many of those feelings echoed my own. When you read the monographs that accompany the dolls you will understand what I mean. The emotions expressed in them cover the gamut.
Due to the extended period of time it takes for the women to decide what they want their doll to look like, what message they want to convey to others, among other emotional factors ... we never see the whole process from start to finish.
Another workshop at Flint Wellness, at a support group for women, was very interesting. My daughter, Stephanie, accompanied me on this trip. (About an hour north of where I live.) The women wanted to share their stories with me while I was there. They felt a bond with me even though the circumstances of our lives were very different. I felt honored to be allowed into their stories, their lives. They promised that they would work on their dolls and call me when they were completed. Out of the seven women who were there that day, four dolls were created. So they invited me up to Flint for World AIDS Day to be a keynote speaker, bring more of the dolls to display, and welcome the four new "girls" to the traveling exhibit. It was wonderful. Other times, agencies in other states contact me after hearing about the project or seeing the website. Then I just send the plain dolls and the paperwork to the social worker/counselor who called me. They take it from there.
Can you describe your feelings when you were first diagnosed? Did you feel differently a few months down the road? How long do you think it takes to really process the diagnosis?
I was numb, very angry and totally incredulous. My husband and I were both diagnosed at the same time, in 1985. The only good news that day was that our 18-month-old daughter had tested negative, but, at that time, they couldn't be sure of the window period, so they told us we'd have to keep getting her re-tested for who-even-knew-how-long. So Mike and I both had the diagnosis, but there was nothing anyone could do about it. It was awful. We didn't talk about it much for the next four years, but in 1989 I just broke down after a pregnancy loss. By that time, though, a social worker at the Hemophilia Center was available to talk with people who were HIV positive, and we started a support group for women. Even there, though, most of the women in the group were HIV-negative.
Any tips for those who are newly diagnosed?
If you can, talk with someone who's been living with HIV for a while. The diagnosis is terrifying, and doctors aren't always all that good at explaining everything even if you are in a position to hear it, which when you get your diagnosis, you might not be. You're still the same person you were before, too -- it's hard no matter what, so remember that you're still the same person dealing with the same things you were dealing with before you got your diagnosis. Connect up and get the support you need.
If you want to, can you share how you believe you acquired HIV?
Sex with my husband, who was a hemophiliac. He got it through a transfusion, and I got it from him.
What do you believe was your biggest risk factor?
I was married, and more importantly: I loved someone. That's probably everyone's biggest risk factor.
What do you think is the first thing someone who has just found out he or she has HIV should do? What's the second thing?
First thing: Talk with others who are HIV positive for the perspective they can offer.
Second thing: Find a doctor who will listen to you! Clinical skills alone don't make someone a good doctor -- I've fired doctors because they weren't listening to me. You have choices, especially with treatment -- talk with a long-term HIV-positive person and pick their brains.
If HIV were a person, animal, or object, what would it be? Why?
When I was first diagnosed, I pictured the virus as something horrible and evil, like the Devil. Now, though, I picture it differently. Many years ago, I wrote a letter to the virus saying, "We can both live, if we learn how to co-exist. I think we can do this." So now, I just see it as a virus that lives in my body and causes me trouble every now and then. It's a shadow, and a good teacher.
What do you think is the biggest problem facing HIV-positive people today?
Stigma and finding decent health care and affordable medications. There are not nearly enough knowledgeable physicians out there -- lots of them are hacks. They're not malicious, but it's a complicated condition and you can't treat everyone the same way with the same treatments. The complicated nature of HIV treatment is a huge deal, especially for people who are living longer, because everything gets more complicated as you get older.
The stigma associated with HIV/AIDS is still such a huge deal -- people still make so many assumptions. I've had people up in my face with Bibles, telling me this is my "punishment." For what? For loving my husband and getting married and having sex with him? I have a special problem with religious zealots who want to make HIV about sin and punishment. Back in 1993, a friend and I were speaking in a town up in the Upper Peninsula of Michigan, and we had to stay in the rectory of a church in another town because people were so up in arms about "people like us" coming there to speak. I wish people would just step back, breathe and take their heads out of their butts.
What is the biggest change you'd like to see in HIV care?
I'd like to see more knowledgeable providers and much more research on women. We're different from men chemically and hormonally, and they're just now beginning to scratch the surface on all that as it relates to treatment.
How about in HIV education?
I want to see more real HIV education. There's almost no funding now for comprehensive sex education. The bulk of federal funding is going to abstinence-only programs when real, relevant education is needed. Young people are especially at risk, and school boards won't allow frank conversation, because too many people are too freaked out about sex to talk about it with their own kids, and, God forbid, they come home from a school health class with real questions! Kids are smart -- they know when you're snowing them, so don't beat around the bush. Get them the information they need.
When you look into your crystal ball, what do you see in the future for people living with HIV?
On the upside, research is happening. Medications are less difficult to take -- things are getting better. We have a lot more knowledge today, so fewer people run screaming from the room when you say, "I have HIV." On the downside, though, health care is so expensive and doctors are so afraid of lawsuits, and it's only going to get more complicated. What if insurance companies start putting caps on coverage? Someone's going to have to pay for all this and I worry about that.
How do you maintain a positive outlook?
I have a good outlook most days because I surround myself with love. My people are the best people in the world! I got stuck in guilt for a while, but I don't do that anymore. I wake up every morning assuming that today is going to be a great day. Laughing is wonderful too -- and I also eat dessert first whenever I feel like it!