JANE FOWLER: Thank you and
good morning. It is such a privilege to be here, and I thank any and all who
made this possible. On a frosty Friday morning in New York in January of 1974,
I sat in the Rockefeller Center office of Barbara Walters. She was then
co-anchor of NBC's "Today Show." I was there as a member of the "Kansas City
Star's" news staff to interview the female star of morning television for a
story that would appear later in my newspaper. I was 38 years old, an enthusiastic young career woman, proud also
to be a wife and mother. Fast-forward through the years. On an autumnal Friday
night in Kansas City, Missouri in October of 1998, I sat in my apartment in
front of a television set watching and listening to Barbara Walters, then on
ABC's "20/20" news magazine. From her host chair, Barbara introduced a segment,
"Safe Sex and Seniors," in which I would appear. I was 63 years old, still a
proud mother, but now divorced; and my life course and work had changed, not,
however, by choice.
After more than 30 years as
a print journalist, I found myself in a role reversal. No longer an
interviewer, I have become the interviewee, answering questions instead of asking
them. I am today a spokesperson for a health cause that we all know is neither
chic nor comely. In the edition of "20/20," in which I figured, Barbara
confirmed what we HIV activists already knew: that it is imperative to dispel
the myth that seniors don't have sex and therefore are not risk for sexually
transmitted diseases. The good news is that seniors still do have sex. The bad
news is that—and I say yay to that—the bad news is that too many in the older
population don't realize that they must not have unprotected sex unless a
couple is in a mutually, and underline mutually, monogamous relationship in
which neither partner is STD-infected. My personal commitment, my passion, is
to reach older women specifically, my sisters who comprise a larger proportion
of the single senior population, with a message that could save lives. To
illustrate why I have the credentials to speak on this subject, I want to share
a story.
It begins with a letter that
I opened on the first Sunday in January of 1991. I had just flown back to
Kansas City from a cheerful fortnight spent in San Francisco, where I
celebrated the holidays with long-time friends, natives of the Middle West, as
I am, and with my only child, my then 26-year-old son Steven and his fiancée. My
first task at home was to tend to the mail that had accumulated in my two-week
absence. This is when I discovered the letter from a health insurance company
to which I had recently applied for new medical coverage. I carry the letter
with me. I won't take time to read it all, but it announced that I had been
rejected because of a significant blood abnormality that was revealed in the
routine blood test. Shaken by this startling news, I was too distraught to
sleep much that night; and next morning, I telephoned the insurance underwriter
who had signed that letter. "What is this significant blood abnormality?" I
inquired, "Why did I flunk your test?" Her curt reply, "Oh, I'm sorry. That's
confidential. Your doctor will have to tell you." A few hours later, I was in
the office of my family practitioner, who looked troubled as she referred to a
fax from the insurance company and reported, "Jane, this insurance company
claims your blood tested positive for HIV." Stunned, I had a second test two
days later as confirmation. And after waiting two weeks, the longest, most
agonizing two weeks of my life, I learned, sadly, it confirmed that I do have
HIV. And my family and the few friends I told were as shocked as my doctor
because I didn't fit an HIV/AIDS stereotype. I obviously was not a gay man. I'd
never been an injecting drug user nor had I ever had a blood transfusion. At
the time of my diagnosis in 1991, I was a 55-year-old career woman, a
journalist. I had lived a conventional, traditional life. I had been a virgin
on my wedding night in 1959, and I remained monogamous for 23 years of
marriage. But then, in the early 1980s, I was divorced. And I was devastated,
because it wasn't something that I wanted.
I sought advice from friends
and professional counselors, as well, and the consensus was, "Yes, Jane, it's
too bad your husband left and broke up the family, but these things happen. Pick
up the pieces and get on with your life." I had my career, but what I didn't
have was the kind of social life I'd enjoyed as half a couple. So I began
dating, dating for the first time in a quarter century. I didn't consider
myself promiscuous. I didn't frequent the singles bars. I went out with men my
age, who like me, had been married and were divorced. And in those days, I knew
little about HIV/AIDS, only that there was a mysterious, fatal ailment
affecting the gay community. It didn't occur to me that I would put myself at
risk by engaging in unprotected sex with an attractive, intelligent, amusing
man of many interests, a man who had been a close friend my entire adult life. He'd
even been an usher in my wedding party. But what happened to me at the end of
1985 at the age of 50 was infection with HIV.
Following my diagnosis and
doing research to determine when I'd been infected, I withdrew. I lived in
partial isolation, spending time mostly with family and those friends who knew
my condition, who were supportive, compassionate, and nonjudgmental. Four years
passed. I took my prescribed antiretroviral drugs, and I was blessed. I stayed
well, but I remained embarrassed and humiliated, still hiding the fact of my
HIV. But then, I had a change of heart. Why not liberate myself by publicly
admitting my predicament, and then I could bring a prevention message to the
non-infected population, particularly people my own age? Encouraged by my son
and my friends, I decided to put another face to this epidemic, an old,
wrinkled, jowly face to show people that HIV does not discriminate, that it's
not who you are or how old you are, but what you do or don't do in regard to
transmission. In my current role as Director of HIV Wisdom for Older Women, a
national program I launched in 2002, I remain committed to getting the word
out, to calling attention to how this disease can impact the lives of senior
citizens, who currently account for between 13 and 17 percent of the AIDS cases
in America. Gosh. And get this, nearly 18 percent of the female AIDS cases are
in women over 50, the majority in women of color. HIV wisdom? We all need
wisdom.
The aging community, the
public needs to be taught how transmission occurs and how it can be prevented. Think
condoms, which can offer protection; but too many in my generation associate
condoms only with birth control, and after menopause, that becomes unnecessary.
Just as important is the education of the professionals, the healthcare and
social service providers who administer to seniors. They have to recognize that
this disease can and does exist in the senior population. They should initiate
discussions about sexuality and the diseases, explain prevention, even
encourage testing. I can remember a time in 1989 when I asked my family
practitioner if maybe I should take an HIV test. I'd begun to hear that the
disease was moving into the heterosexual population, and after all, I had
enjoyed a few intimacies after my divorce. This was the physician who two years
later would pass on the insurance company test results. But at that earlier
time, she said simply, "Oh, no, Jane. You? You don't need that test. Why, if
you had that AIDS, half of Hollywood would be dead by now." Try as one might to
age with good humor and grace, it isn't easy to accept the limitations: decreased
physical and mental capabilities, muscle strength, lack of energy, the loss of
physical attractiveness, the forgetfulness. Couple these frustrations with the
variety of feelings experienced by any HIV individual and it's simple to
conclude that seniors—especially women, who often suffer greater self-image
issues involving face and figure—may endure more emotional and physical
stresses than do others living with the disease, and primary among these is
stigma.
Older women face a double
stigma: the stigma of ageism, the stigma of infection with a virus that is
transmitted sexually or through injecting drug use. After all, common thinking
is that Grandma shouldn't have been out there having sex or shooting drugs. Grandma's
out there screwing or shooting, actually. This means that too many in my
HIV-infected, in my age group, are for the most part invisible, isolated, and
ignored. And it's often by choice, the choice made by women who are too
embarrassed and fearful even to confide to family members. Thus, my goal is to
prevent HIV infection in aging women. I want older women—in particular, women
who might be coming out of relationships that have left them vulnerable or
depressed, needy or naïve, seeking love or just affection—to understand what's
out there today and to be aware that they must take steps to protect
themselves. It's never easy to suggest to someone that her new partner, or her
old partner, her husband, significant other, might be seeking experiences with
other women, including prostitutes, or having sexual encounters with men, or
for that matter, secretly injecting drugs and sharing needles. However, I can
now say with certainty, you never know the sexual history of anyone else, only
yourself. Now, for the older generation, there's the consideration of Viagra
and what effect it might have on the incidence of HIV in aging adults.
Do you remember those print
and television ads of four years ago, old Bob Dole, former U.S. presidential
candidate, former senator from my neighboring state of Kansas? He would talk
about how it took courage to talk to a physician about erectile dysfunction,
and he proposed, "Get educated about E.D." I thought at the time that old Bob
Dole could do everyone a favor by also saying, "Get educated about HIV." Even
today, he could pitch prevention, i.e. safe sex, to his cronies with the line,
"And now, if you can get it up, cover it up." I was going to say one more thing
in conclusion, but I'm out of time.
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