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In the Media |
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The following
is excerpted from "When Heaven
Weeps: Lessons from the Road to
AIDS," a speech that Mary Fisher
gave October 20, 2008, as part
of the WorldView speaker series
at Trinity Christian College,
Palos Heights, Illinois. |
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It is a joy to be on this beautiful campus,
and to acknowledge this College's good work
preparing students to change the world. That
is, I take it, the meaning of Trinity's
mission. Having visited a good share of the
world, often working among the poorest of
the poor – I can say with certainty that the
world could use some changing. And I honor
you and your College for being committed to
that purpose.
It's amazing to me that the presidential
election cycle has again deposited us on the
eve of national elections. I have lived
through these cycles in various stations:
once in a newsroom as a television producer,
once in the White House as the nation's
first woman advanceman, once as keynote
speaker at the Republican National
Convention, and many times since as a
sometimes-bemused, sometimes-frustrated, and
sometimes just-baffled citizen and voter.
But perhaps I could take you back with me
for a moment to another place and time that
changed my life and, with it, my world view.
It was far removed from presidential
politics, and the place I live now.
It was July, 1991. I was a young mother, two
preschoolers playing near my phone, the hour
I learned that I was HIV-positive. The
months that followed my 1991 discovery are a
haze of grief and chaos, a search for
answers that did not exist and a coming to
grips with dying.
In 1991 AIDS was already a global epidemic
but we did not yet know it as we know it
now. The virus had planted roots in specific
populations including sex workers in Asia,
trafficked women in Eastern Europe, the
impoverished of Africa and the gay community
of the United States.
In 1991 everyone infected with AIDS was
headed for the grave. Some drugs could slow
the pace of dying a bit, but not much. Those
of us who heard the diagnosis knew the
reality: In a matter of five years or so, we
were going to become ill, and we would waste
into the grave. We knew it. Our families
soon knew it. Everyone with AIDS knew it. We
were pilgrims marching inevitably to our
deaths. So I spent those early years doing
the only common-sense thing I could do:
preparing to die....
I quickly discovered that dying is not a
mainstream activity in America. Candidates
for the presidency visit college campuses
and VFW halls, but their campaign buses do
not stop at hospices and funeral homes. We
don't like death, and we don't know what to
say to the dying.
Encouraged by my parents to make the best of
the years I might have, I looked for a
mission to achieve. President Ford
encouraged me not to give up hope. His wife,
Betty – then as now, a friend and a mentor –
had courageously shown how to deal with both
alcoholism and breast cancer: by telling the
truth, and telling it as boldly as possible.
And so I did what I could. On August 19,
1992, I spoke to four- or five-hundred
million people around the world, telling
them that I – a Republican mother of two
preschoolers – was dying of AIDS.
Antiretroviral drugs emerged in 1996,
bringing the miracle of prolonged life to
millions of people with AIDS who have access
to the drug regimen. It was, for me and for
many on the road to AIDS in America, an
extraordinarily difficult time. We had come
to grips with dying. I had held the hand of
Brian, my husband, the man who had infected
me, as he died – just as so many others had
held the hands of those who'd infected them
as they died, showing us our own futures. I
was managing the closure of my life, caring
for the future of my children, arranging the
details of death and all that would follow.
I was one of millions who knew that hoping
to avoid death was a personal folly and a
cultural mutiny. How could we seize life
after so many had wasted into death? We did
not want to hope for life, or to yield our
places in the crowd of AIDS pilgrims moving
steadily to our deaths. We were ready to
die; we were not prepared to live.
Hope is not easy. To hope for life in a
context saturated by death is to reach for
what seems improbable if not impossible.
What's more, if I were going to live, then I
would need to acknowledge a life purpose
that I had not yet fulfilled. To hope means
more work to be done. But in time, I came to
grips also with hope, imperfectly but as
best I could. And so I have lived, seeking
and sometimes finding a purpose in my life,
knowing that I cannot give in or give up
until the work is done. Mostly, I am
grateful. Mostly, I am able to hope. Mostly,
I want to live.
My children are grown now, one out of his
teens and the other about to make the same
transition. I've been honored to represent
the United States and the United Nations in
various roles, to take on challenges that
are both daunting and rewarding, and to
learn what it means to trying living with
hope especially among those who have no hope
in places like Asia, Eastern Europe and
Africa.
What we have learned since those days of
dying, before the dawn of antiretroviral
drugs, is that cultural change is hard.
Africa is still poor, Asia is still in
denial, America has pursued other wars.
Satellites and the internet have taught us
to think globally during the past decade,
but millions of dusty orphans wandering the
Sub-Saharan move most policy makers to
nothing more than a sigh. Young people think
AIDS has been cured. Communities of color,
of women, of immigrants, of drug users, of
the rural poor and urban ghettoes – they
have much in common: They lack prestige,
they lack power, and therefore they lack
hope. They also lack...leadership. What they
do not lack is AIDS.
We have learned that the American
capacity for denial is boundless. Prior
to the current financial mess, the signs of
gluttony and greed – of easy money that
would result in hard debt – the signs were
everywhere. We were, as individuals and as a
nation, utterly willing to deny the reality.
And so it has gone with AIDS in America. We
treat the epidemic as though there were a
cure; there is not. The number of people in
American who are becoming infected, and the
number of people who are dying for lack of
treatment, continues to escalate – and we
look the other way.
To the best of my knowledge, the following
truth has never found a headline in a major
American newspaper: In Zambia, an African
nation I know well, one out of four family
households is now headed by a child twelve
years old or younger – an orphan raising
orphans, or dying in the attempt. The horror
of this reality should make us recoil; it
ought to stir our souls; it wants to make us
sleepless. But most of our policy makers,
and most of our fellow citizens, prefer not
to be bothered by such a distressing truth.
We are too worried about our 401(k)
accounts. We take refuge in denial.
We have learned something about the power
of stigma and discrimination, of
judgmentalism that rises with the passion of
religious fervor. When my friend is
diagnosed with cancer, his family rallies
and his colleagues pitch in; had he been
diagnosed with AIDS, his family would have
wanted to know what immorality he had
practiced, and his colleagues would feel no
demand for compassion. A heart attack victim
in Chicago gets medical care; a person with
AIDS "gets what he has coming."
The single most striking characteristic of
the AIDS epidemic, worldwide, is stigma. In
Asia, it warrants stoning women – a peculiar
response for those whose husbands have
infected them. In Africa, saying you have
AIDS may result in your exclusion from
family, village, children and hope. In Boca
Raton, Florida, I went from being an
ex-White House staff member, welcome at any
charity event, to being "that woman with
AIDS" whose children were no longer invited
to visit the "nice" homes – "Who knows what
they may bring with them?"
We have learned in our quarter-century
with AIDS, that one response to the virus is
pure, unadulterated fear. Those
diagnosed with the disease are fearful of
what it will do to their bodies, their
families, their jobs and their ambitions.
Each fear has roots that run deep into the
experience of the AIDS community. The fear
that someone in the office will learn that I
have AIDS; the fear that my children will be
ashamed of me; the fear that I will never
again be considered "clean...." AIDS has
taught people how to fear.
I don't know whether it is AIDS, or fear,
that has taught us the meaning of
vulnerability. But we've learned it,
those of us in the AIDS community. When you
lacked economic status or political
standing; when you do not speak English but
live in America; when you are tricked into
slavery and become one of the million women
and girls who are trafficked annually – look
at those most readily infected with AIDS and
you will be looking at the world's most
vulnerable people. They are, in many
instances, incapable of protecting
themselves.
Forgive me for a quick digression: I was
visiting with a nice gentleman while flying
home from Africa a month ago. He was an
advocate of abstinence as the best way to
prevent AIDS. I asked him how he thought
that should apply to marriage, since in
Africa the majority of women infected with
AIDS are infected by their husbands, in
marriage. To spend U.S. government funds
fighting AIDS in Africa, you are compelled
to teach abstinence. And you are teaching
it, in most cases, to incredulous married
couples. The nice gentleman wasn’t sure how
to make this work, and neither am I.
We have learned, during our sojourn with
AIDS, a good deal about the power of
community. When I was first diagnosed
with AIDS, no one knew of a support group
for women with AIDS in America because we
had not yet found our voice; we were not yet
standing up in public. Had it not been for a
courageous gay community in this nation,
where I was welcomed and educated and
supported and loved, I do not believe I
would have made it to 1996. Men who had been
despised and rejected by families and
employers stepped forward to ask what they
could do to help me. Men who had been
reviled for their sexuality offered to care
for my children when I was ill. Men who had
transformed beautiful condos into darkened
hospices – they welcomed me. From their
death beds, some of them thanked me. And I
had done nothing more than heed the advice
of Betty Ford: I had told the truth, and
told it publicly.
The power of community, you know, is largely
the power of communication. It is the voice
of the neighbor who calls to be sure you’re
well. It's the song that lifts our spirit,
the speech that stirs our soul, the sermon
that draws us toward the Divine, the cry of
the abused child who the community has
failed. Community is largely built by, and
sustained on, words. It is in listening, and
being listened to, that a child learns she
is valued in the community. It's in the
whispered "I love you" that brightens the
darkness of shame.
It is no accident that when strong
communities want to exclude an individual,
they practice something called
"excommunication." And it was no accident
that, in 1992, I opened my address to the
world by asking all "to lift the shroud of
silence which has been draped over" AIDS,
"to bring our silence to an end."
Communities communicate, and when they are
silent, that communicates something too....
The series of which this evening is one part
is called "WorldView." It's a splendid title
with a broad vision, a desire to explore how
we might see the world differently – and, if
we did, what difference this might make....
It is we who hear the voice of God breaking
in grief, sobbing in frustration, galled at
our indifference...and it is we who are
privileged to make a difference, to get out
of our chairs and into action befitting of
kingdom builders. We were not put on this
earth to engage in self-pity and fear and
tentativeness. We were given an opportunity
to do the work of God....
If you will join in this work, you will
carry hope to those who are hopeless; you
will throw open the gates to the kingdom,
and the nations will march in. And in the
quiet that follows the blaring trumpet, you
will hear what others in this kingdom have
heard before you, and I say to you again
tonight: "Grace to you, and peace."
© 2008, The Mary Fisher
Clinical AIDS Research and Education (CARE)
Fund at the University of Alabama at
Birmingham |
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In the Media |
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