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We've known AIDS for twenty
five years now. Ironically, that was a
lifetime for many of the young men in this
city who taught us our first, agonizing
lessons. "Gay Cancer" caught us all by
surprise that summer of 1981, as my own
diagnosis took away my breath ten years
later. But we've now come to a point where
the challenges are more daunting than
surprising. We know more now, even if we do
not act on all that we know. We have the
capacity for smarter policies and more
effective treatments, even when politics
skew our policies and ignorance slows our
treatments. We have amassed a considerable
amount of scientific and clinical
experience. Twenty five years into the
epidemic, what stands out from formulas and
prescriptions, studies and texts, is the
simple recognition that family – that who
and how we love – matters.
You chose as your theme
"Focusing on the Family" – a title
hauntingly close to the name of Dr. James
Dobson's national radio show, "Focus on the
Family." Dobson and his friends have had
much to say about family values, most of it
based on the belief that only they can
define a family and only their values
matter. Despite my reputation as a
Republican, let me offer a somewhat
different view.
The families who taught
America most about AIDS in the epidemic's
first decade were families of gay men.
Others contracted the disease as well, of
course, most notably acute hemophiliacs. But
it was men, mostly young and mostly gay, who
bore the brunt of the disease, who came to
clinics with their telltale rashes and
cancers, who wasted before our eyes. Rising
from the memory of those difficult days are
two images of family.
One image is of the family
broken not by AIDS but by judgmentalism. Gay
men who'd gathered courage in the previous
decade to "come out" had discovered that
sashaying playfully in a distant gay parade
was infinitely easier than coming out
quietly at home. To tell your friends was
tough; to tell your father was unimaginable.
For tens of thousands of young men, the word
"family" had become a synonym for the word
"rejection"; "home" was a place they could
not go. And then they were found by AIDS.
In awful and wonderful
ways, we came to respect the power of
family. Where rejection was the family
pattern, young men created new and fragile
families. Uptown condos were converted from
design showplaces to quiet hospices where
the sick cared lovingly for the dying. No
one argued about gay marriage because
marriage wasn't the issue; being loving was
all that mattered. And where families
rallied with affection and support, where
love was rich as the aroma of fresh-baked
bread, young men went home to be cradled by
love, holding their father's hand, seeing
their mother's eyes, knowing that they were
loved – even if their small-town obituary
claimed death due to cancer.
The power of family
remains as undeniable today as it was then,
and as much a two-edged sword. For the
immigrant woman in Queens who fears that she
brought not only her two children but also
one virus to her mother-in-law's apartment,
the power of the family to reject and
isolate her, to disown her, to caste her off
and out – it is a fearsome thing, enough to
keep her from seeking testing and treatment.
At the other extreme, the teenager in Harlem
who's fallen for the magic myth that AIDS
has been cured comes home to a mother who
insists that he be tested: His life is
redeemed by a mother's love.
We've learned at our home
that AIDS is a family disease. We knew it in
hard ways when Brian died, when our sons –
then preschoolers – knelt with me in the
dirt of his grave. We were family before
Brian died; we were family after. And we are
family today. I have survived not only AIDS
but, even more challenging, my children's
adolescence. It now seems possible that I
will live through their teenage years
without committing either homicide or
suicide. We are, as you can tell, family.
American politics have
done American families little good in recent
years. Those who would legislate who and how
people love have either an inflated view of
the power of policy or a profound
misunderstanding of human nature – or,
perhaps, both. When American families are
broken by poverty; when we put more Black
men in jail each year than we graduate from
college; when healthcare policies are
convoluted to the point that parents must
choose between giving children their food or
their shots – policies have run amuck;
families are at risk.
Americans are in love with
the romantic ideal of "family," something
akin to "Father Knows Best" television from
long-ago childhoods: two parents, mother a
stay-at-home homemaker, father an
all-knowing breadwinner, and children who
eagerly do homework before calling out "Good
night, John Boy" .… But if we are going to
make families a centerpiece of our thinking,
our planning, our policy making and our
interventions, then we must deal with
families as they are, not as we wish they
were.
It means that we will
recognize most families are under incredible
stress. Whether they are economically strong
or weak, most couples and nearly all parents
lack confidence that they can make ends
meet. Every challenge we can list – from
drugs to gangs, abuse to ignorance,
abandonment to intolerance – all of it comes
home to the family. Divorce and remarriage
and re-divorce has become the dominant
pattern surrounding children raised in this
nation, whether we like it or not. And this
is true only in those families where
marriage was an institution; for one out of
three children today, no parent will have
bothered with marriage. I am not decrying
the downfall of the so-called "traditional
family," but I am urging that any appeal for
family-based policy be built on the reality
of families as they exist – not as we wish
they existed.
In fact, I know how
powerful and positive families can be
without conforming to our traditional
expectations. I'm working in the African
nation of Zambia to build a healthcare
campus and to create economic opportunities
for women, especially women with AIDS. Our
work there is done in a context where one
out of every four families is now headed by
an orphan, twelve years old or younger,
caring for younger orphan-siblings.
If you would like to learn
about family values, I suggest you turn off
James Dobson's "Focus on the Family" and
spend a day with these little orphan bands.
They are, in every meaningful sense,
families. They are woven together so tightly
by love that the oldest child will not let
the littlest out of her sight; the oldest
brother will carry the youngest, give up his
food for the hungriest, and gently bury his
little sister when she dies…
What binds a unit into
something worthy to be called "family" is
not convention or gender, ethnicity or
economics. Families are molded by love. It
is more than a fluttery feeling. It's the
knowledge that you would give your life for
the person who holds your hand, whether you
are young men stumbling toward the grave or
aging parents attending a granddaughter's
wedding. It's the certainty that we belong,
the conviction that we are welcome, that we
will be accepted unconditionally even in our
worst of all moments…
If you are richly blessed
in this life, you will experience the
powerful, healing, hopeful power of a
family… And if we are able, we will take
what we learn from our own experience with
family – the exhausting work of nurture, the
grinding challenge of discipline, the
surprising giggle in the dark – and enable
others to build families who see AIDS as a
reason to love one another. If we are able
to do this, to make this difference in the
lives of others, then we will end our days
at rest.
©2006,
The Mary Fisher Clinical AIDS Research and
Education (CARE) Fund at the University of
Alabama at Birmingham. |
