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First Person: Kathleen Gerus-Darbison

January 13, 2009

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By Laura Jones


About Kathleen Gerus-Darbison

Home: Macomb, Mich.
Diagnosed: 1985

Kathleen Gerus-Darbison, from the small town of Macomb, Michigan, transformed herself into a supporter of HIV-positive women after she was diagnosed with HIV, leading workshops where HIV-positive women turn simple dolls into healing works of art.

KATHLEEN GERUS-DARBISON GREW UP IN SMALL-TOWN MICHIGAN under what she refers to as "Brady Bunch" circumstances. In the early 1980s, she fell in love, got married and had a child -- all part of a normal life for a young woman. Her husband's hemophilia was a known health concern, but improvements in hemophilia management had dramatically improved the outlook for people living with the disorder. But in 1985, both she and her husband were diagnosed with a new blood-related disorder: HIV. After four years of silence, she and her husband both announced their HIV status on live television in order to mobilize the hemophilia community's response to HIV/AIDS after the death of Ryan White in 1990.

"The best thing about sharing my story is the opportunity to dispel those denial myths, and really drive home the point that this can happen to anyone."

An activist and artist, Kathleen has been the recipient of many awards, including the United Way Heart of Gold Award, National Pathfinders Award, National Hemophilia Foundation's Ryan White Memorial Award and Michiganian of the Year. Kathleen began her foray into national volunteer work in 1989 when she attended the inaugural meeting of the Women's Outreach Network of the National Hemophilia Foundation (WONN), of which she served as co-chair for four years. In 1992, she co-authored the children's book with her daughter, Stephanie: My Parents Have HIV/AIDS: Some Advice From an 8-Year-Old. She also was co-founder of a project called STITCHES A Doll Project to preserve the stories of HIV-positive women everywhere.

Who have been your mentors?

There are so many crucial people in my life. My parents have always been such wonderful role models. I really had a Donna Reed/Brady Bunch childhood. Of course, I didn't think it was so ideal at the time, but looking back now, it really does seem like the perfect little life. They taught me that everyone's the same, that you don't judge people based on their race, religion or sexual orientation. Candace, my mentor, has been a very pivotal person for me. And, of course, my daughter -- she's been through everything I have, and she didn't have any choice in the matter. You know, you're supposed to teach your children, but I think we learn even more from them than we teach them.

What made you decide to speak out publicly about your HIV status?

This was 1990. Ryan White had just died and the hemophilia community asked us to speak out because the community wasn't talking about it. Although nearly 90% of hemophiliacs got infected during the time period before blood-supply testing, hemophiliacs didn't want to be associated with homosexuals, so no one wanted to talk about it.

I was on the board of the National Hemophilia Foundation at the time, and the organization asked my husband Mike and me to go public. Only my mom knew everything that was going on at this time, that Mike and I both had HIV. So the Hemophilia Foundation calls us at 2 p.m. and wants us to go on live TV at 5 p.m. that evening and basically out ourselves and everyone else with hemophilia as being HIV-positive.

Well, we talked about it, and basically Mike was tired of lying -- he was sick by this time and had to cover up his appointments and what was wrong with him because he was still working. He said, "I think we need to do this," because he didn't want Ryan White's death to be the death of AIDS awareness in the hemophilia community. So we decided to speak on TV that night. We told my mom, and she told my dad and called around to all the family, saying "Kathy and Mike are going to be on TV tonight, and you have to watch because they're going to talk about something very important." It was a weird way to have your family find out, but that's the way it happened.

Which channel were you on ... was it a local station? What was the reaction of your relatives?

It was on Channel 7 locally, I think that is ABC. It was scary doing that interview. We had never spoken about this issue before, never been on TV before. But we did it and apparently everyone in our extended family, including Mike's mom who lived in Windsor, Ontario, saw the broadcast.

Everyone in our family were very supportive, even though they had many questions. Some questions did not have any answers at that time. But my family has always been there for us through thick and thin. Even neighbors of ours at the condominium complex let us know that they had seen us on TV. One lady came over to our house, knocked on the door, and when I opened it she began to cry. I thought something was wrong and she needed my help. All she said was, "We saw you and Mike on the news. We want you to know that we are here for you if you need anything, someone to babysit Stephanie, anything at all." Then she turned and left. I hadn't expected that. At a time when most people ran screaming from the room when you disclosed your HIV status, I did not expect people to be so compassionate.

What do you think is unique about your story?

I don't think there's anything particularly unique about it. I fell in love, I got married. We didn't know Mike had HIV ... it's not an unusual or unique story. Most people probably acquire HIV from someone they love and trust.

What do you think is unique about the audiences you try to reach when you speak out?

I talk with many different groups, and, to be honest, there's nothing all that unique about them either. The early work I did was in the schools, with young people who figured HIV would never touch them personally. Since then, I've also talked with senior citizens, people who are living on the street, people who are doing sex work, whatever -- people are basically all the same, with the same risks and concerns and the same questions.

What's the best thing about sharing your story with others?

The best thing about sharing my story is the opportunity to dispel those denial myths, and really drive home the point that this can happen to anyone. My face is starting to get thin now, but prior to this year I just looked like your regular neighbor/mom/aunt kind of person, and when I do HIV 101 talks, I don't disclose right away. I disclose my own HIV status when we're getting into the nitty-gritty, and boy are people surprised! You can see the looks on their faces as they process the fact that I'm HIV positive, especially the people who came in bored -- they're the ones who then sit up and start asking all sorts of questions.

I also enjoy running into people later, sometimes even years later, and hearing that something I said made a true impact on them. I was getting a massage the other day and the massage therapist recognized me. She couldn't place me at first, but then she realized she'd heard me talk about HIV several years ago. And her brother-in-law is HIV-positive, and she told me, "You changed our whole relationship," because she'd had misconceptions about people with HIV before hearing me talk. I was just there to get a massage, but I got to hear that too -- that was great!

What's the worst thing about sharing your story?

You have to re-live things that are really awful. The things that people ask about the most are the hardest things to talk about. During periods of heavy loss, I'd just start sobbing during talks, because I'm a real person and those are real losses.

What do your relatives feel about you speaking out?

Really, everyone has been 100% supportive over the past 15 years. My mother often goes with me when I speak -- she would drive me to speaking engagements when I have been ill, in fact. My current husband comes with me a lot now, too. My daughter used to speak with me when she was young, and now that she's grown up she's started to do that again as well. She had a lot of trouble with it when she was in junior high -- she wanted it kept a secret, and so, of course, didn't want me in the newspaper or on the TV. Kids would say things about me and about her dad and she'd get in fights ... she'd just beat the crap out of them. That was a hard time for her.

What have you learned about yourself since you began speaking openly about your HIV status

I've always had some kind of health issue, whether it was severe asthma or allergies or HIV, so my life was always going to be about living and dying somehow. But I have a real appreciation for health, and I am a survivor. And the funny thing is that I've always assumed everyone else with HIV would react like me in that way, but that's not the case. This one young guy I talked with told me, "I want to go out dramatically, while I'm young and good-looking." And that is exactly what he did. Within a year he was gone. That has taught me a lot.

How has speaking out helped you, and how have you changed as a result?

Speaking out has definitely helped me cope, and I'm glad I'm able to help other people, no matter what their troubles are. I feel I was meant to teach and be a messenger, so that's what I do.

How much time do you spend doing HIV/AIDS work now?

What was once my sole area of work is now less than half. This is due to funding cuts at the agency where I used to work (The Midwest AIDS Prevention Project in Ferndale, Michigan). The education that I used to do in the schools and colleges is no longer funded through the state. Now they leave it up to the Department of Education. I don't think much of that is happening. So now my HIV work is by request. I have many contacts with public and private schools, colleges and universities, and local health departments where I have done HIV education for years. These places invite me back once or twice a year. I am also a certified speaker for "Positive Perspectives," a program of the Michigan AIDS Fund. Also, my STITCHES Doll Project has brought many more opportunities for education. This doll project gets 10 to 20 requests per year on average. Sometimes I accompany the dolls. Other times, I send out the "girls" to do the education on their own because the requesting agency is too far away for me to drive. Since this doll project is totally funded by private donations, traveling is limited. We have traveled to Florida and Indiana with the dolls in the past. Photos of both of those trips are on the Web site. I created and maintain the Web site. In fact we have received more new dolls from Virginia and New York that need to be photographed and put up on the Web as soon as I get a chance.

Tell me about the book you co-wrote with your daughter.

My daughter was eight years old when my husband died. He and I were working on a book at the time. We had hoped we would be able to help other parents who were living with HIV. But that book never got finished, because he died in October of 1992. However, he suggested to Stephanie that she write a book for kids her age. So one day we sat down at the computer, I asked her some questions, she answered them in her own words, then she drew pictures to accompany the text. One of my colleagues at the National Hemophilia Foundation heard me talking about our little project. They asked to see it. They liked it. They had it printed and distributed it as a free publication through the foundation. I believe that people can still get copies directly from them by calling 1-800-42-HANDI. Ask for the book by name, My Parents Have HIV/AIDS; Some Advice From and 8-Year-Old. As far as feedback, I have had plenty. When it first came out, there was a lot of interest in it because many people were still grappling with telling their children, disclosing to their employers, etc. Stephanie actually got an award from the National Hemophilia Foundation for her work on the book.

Then in 1995, when I was on President Clinton's HIV Advisory Council, I gave him a copy of the book. He was so impressed by it that he wrote a letter to Steph, sent it to the National Hemophilia Foundation, and they had it framed along with a copy of the book. I have it hanging in my den here at home. Personal feedback that I have heard directly has been very uplifting. A man here in Michigan told me that he used the book to explain to his two daughters that he had HIV. Another woman, who I just saw in Washington, DC in February, saw me sitting at a table, came over and asked me my name. When I told her, she got tears in her eyes. She had not immediately recognized me, because I look very different due to my health issues. Then she went on to tell me that her son was "in love" with my daughter because of the book. He is two years younger than Steph and the book made a huge impact on him. At a time when no one would acknowledge what HIV was, he read the book and did not feel alone in the world. Finally he knew someone else who was dealing with the same problems. That was the whole point of writing the book -- to help others.

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