Jane Fowler on Living With HIV in Her 70s -- And Not Dwelling on It
August 1, 2013
"Many diseases can't be prevented. But HIV can," says Jane Fowler. In the 20-plus years since she was diagnosed with HIV at age 55, awareness of the unique impact of HIV on older adults has grown considerably -- and the community has Jane to thank, in part, for that awareness. But her true passion lies in HIV prevention education. A renowned speaker and advocate for people, especially women, who are over 50 and living with HIV, she's been scandalizing teenagers since the mid-1990s with the information that, yes, their parents and grandparents do have sex, and need to know more about HIV.
When Jane was interviewed several years ago by TheBody.com, she talked about her work with HIV Wisdom for Older Women, the program she founded in 2002. Now, she shares more about her health; her community of family, friends and colleagues; the challenge of bringing together older women living with HIV; and how, for her, part of living healthily with HIV is not thinking about it too much.
What was your original vision for HIV Wisdom for Older Women?
My original vision was that, by speaking out, I would help prevent other older women from becoming infected. They would hear my story and realize: Oh, gosh, this could happen to me.
The idea behind HIV Wisdom for Older Women was to prevent infection in older women, and also to provide life enhancement for those living and aging with the disease. I thought I could do that by interacting with older women, and we could form some kind of loose conference call list. And once a month, we could talk to each other and exchange ideas and keep up with how we're doing, and all that.
It just never worked out. I would meet some women, or I would talk to them on the phone. They'd call me or perhaps I'd call them. We'd start to talk -- and I'm referring to women who had just gotten a diagnosis, who had lived for a while with HIV. They wanted advice, and I tried to be as helpful as I could. Then it was like, "Well, we have to keep in touch." But then we never did. I don't know whose fault it was, but we didn't.
I still think (and I may have mentioned this in the first story) that older people are not as likely to be involved in support groups as younger people. As I matured, we didn't have support groups for many things. Therefore, my contemporaries didn't come of age with them. There were, I guess, a few mental health support groups, but I just feel like now there is a support group for anything and everything. It just didn't work that way when we were young.
I was one of the founding members of the U.S. Positive Women's Network [now called Positive Women's Network-USA]. I will have to admit that I haven't really done a lot with the group because the other members all are so much younger than I am. I was the oldest person at the original meeting. Being so much younger, the women are so full of energy ... it just wears me out.
Unfortunately, the numbers of women who are over 50 and living with HIV are not getting lower. People, women, still want to find community. Is forming this kind of informal group still something that you're open to doing?
That would be fine! Yes, that would be fine.
I tried to figure out why the group hasn't stayed active; sometimes, I think, well, for myself, I probably do better when I am not fixated on thinking about HIV. And that could be true of others, my contemporaries. Now, there certainly are other groups. There's a group in Baltimore that's active. It's called OWEL: Older Women Embracing Life. It doesn't say "HIV," but these are older women with HIV. The woman who helped start this group is still involved, but she's not directing the group any longer.
There's also a group, I believe, in New York.
There's a group in New York that I know of called Copacetic Women Over 50, that's women over 50 living with HIV -- another group that does not have "HIV" in the name. The founder of that group is a woman named Brenda Lee Curry.
Oh, yes. I know Brenda Lee.
I know there was also a small group at some point in Minnesota run by a woman named Lois Crenshaw, with a similar acronym: OWWLs, for Older Women and Wise Ladies.
I didn't know about that. Well, when you were mentioning community, I guess that didn't quite turn out like I thought, either. I don't really have a community of people living with HIV. I'm just out there by myself as a prevention educator.
I realize that in my presentations and in meeting people, I do have to talk about and think about aging with HIV (which I do). But prevention is my primary passion. That can come from me just talking to any kind of group, and reminding them that we all can be at risk for this disease, but we don't have to be, if we know what we're doing and we take precautions. That's really what I'm into now.
What kinds of groups do you talk to?
Anybody who will invite me. Anyone who will listen!
I did the Ryan White bit in Kansas City, community planning. That went on all through the late '90s. I didn't know what I was really bringing to that, and whether that was the kind of community which would best serve me, and if I was serving that community. I felt like I never was as forthcoming as I probably should have been about how I felt about certain issues. I'm not one that really wants to rock a boat. I've had leaders of groups say to me, "Jane? Well, Jane, how do you feel about this?" Because I haven't said anything.
And this wasn't just in HIV. That's in a book group, or a board. I serve on the board of the Friends of the Library, here in Kansas City. I love doing that. But I notice that I am the quietest board member. I just don't pop forward with opinions. It's entirely different when I'm up speaking, encouraging people to be careful, to remember that nobody knows the sexual history or drug history of anybody but themselves. I think we all have a responsibility to safeguard our health. I can say that now. I didn't know that in late 1985, of course. But it is important.
Diseases like multiple sclerosis and muscular dystrophy and Parkinson's and all these other diseases, various cancers -- well, maybe lung cancer is preventable -- but many diseases can't be prevented. But HIV can. I just feel very strongly about that. And in that regard, I can just stand up and talk on and on and on. But I've always been a rather shy person. You get me in a board meeting, or a meeting of an organization, and I'm not one that's forthcoming with a lot of opinions and wanting to be center stage. I certainly love center stage when I can give a presentation on HIV prevention. I certainly do. On the board of the Friends of the Library, the thing I love most as participation is to cashier at our book sales. Now, I have to deal with the public doing that, but it's more one-on-one.
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