July 2004 - Special Edition
The following article is by Lawrence Hammar on HIV / AIDS Stigma and has
been widely distributed via email.
My name is Lawrence Hammar, and I work at the Papua New Guinea Institute
of Medical Research, here in Goroka, capital of Papua New Guinea's Eastern
Highlands Province.
One of my duties here (although I usually think about it as being more
of a privilege, a "life's work") is to help run the nationwide
HIV and AIDS and STDs and Sexual Health Project that the IMR is carrying
out in ten of Papua New Guinea's 20 provinces. It is the hardest work I've
ever done, exhilarating and life fulfilling on good days, to be sure, but
depressing and literally backbreaking on other days.
Our rates of STD infection are so high, the prevalence of sexual violence
is just about ubiquitous, the complicity of leaders and led alike is so
obvious, but I'm convinced on multiple grounds as an anthropologist that
the "window of opportunity" closed several years ago for many
of Papua New Guinea's big towns. Just my two toea's worth, certainly all
three of the research sites we've visited so far. Our work will help, I
know, but the critical mass of infection and misery will swamp our best
efforts and intentions.
We return shortly to Lae, and among other things, we'll be treating a roughly
75% infection rate with syphilis among our "asidua" friends/clients
("sex workers" in public health parlance). That's just syphilis
. . . I pity, truly pity my best friend in Papua New Guinea, Herick Aeno,
who is going to be responsible for doling out test results in the midst
of post-test counselling and then treatment. We know from elsewhere that
many of our clients retreat in equal parts despair and denial, some refusing
to eat and then just spiralling downwards, and that's if no one else touches,
much less harms them.
I'm writing on a Monday afternoon, holed up in bed without the spine that
usually carries me around, it having departed yesterday while gardening,
but I know that it closely relates to the events I recount below. They don't
know it, but I'm writing this for my Papua New Guinea colleagues who helped
out.
Last Friday was the saddest day I've had in Papua New Guinea, maybe of
my entire adult life. Papua New Guinea is such a life-affirming country
to be in, to work in, despite what follows, but my work just breaks my heart
sometimes. I was at the work-place when one of my "sisters" came
to us in some distress. She is a wonderful woman named Maggie Nick, who
has in the past been a volunteer and a peer educator, and who is someone
whom we have hired from time to time to help us with interviewing and will
do so again.
She is a volunteer in the truest sense of the term. She was crying and
blurting out a story, relating to us that a young woman, Carolyn, had come
to her, a mutual friend, to tell her of a young woman in her village of
Kamaliki who had been verbally abused, socially ostracized and isolated,
then just recently beaten and burned pretty badly, and then just left to
die by her immediate family and "haus lain" (extended family)
because she was HIVab+. I immediately thought of all the stories I had heard
of such, here in Papua New Guinea, but also in my own country in the first
years of the epidemic.
I thought of Steve Layton's work with LIVING WITH DIGNITY, a great program
that aids those most in need with personal hygiene products. He has told
me from first-hand witnessing of how many HIVab+ who have been consigned
to haus pik and haus kakaruk (pig and chicken enclosures, respectively)
or, down the coast from Daru where we work, a house built in the cemetery
for someone who had been diagnosed thus.
We at the IMR stand for more than just field research and laboratory Bench
science, and we as human beings didn't even think twice. We arranged transport
with our great driver, Daniel Monduran, who proved to be yet another Great
Samaritan that day, and began to prepare. I rang up my beloved wife, Cassandra
Lee, who has recently come to join me in Papua New Guinea, knowing that
I was putting her once again "in harm's way," but still knowing
that she, too, should bear witness to this, and also knowing that she'd
be helpful and compassionate. She rounded up a blanket, several sets of
underwear and socks, soap, towels, and some food, as did I, from my end,
thinking that we'd be nursing someone but still in her own environment.
We were wrong.
We took off for Kamaliki village, myself, Cassandra, Maggie, Carolyne,
Daniel, and my tambu, Phili Manove, and arrived there about 15 minutes later.
We found the village easily enough, drove gently into the compound where
an ancient truck was being operated on by three young fellows from Okapa
region, whose people had purchased a block of land here and were living
in relative social ease with Kamalikis. Eight or ten young children, seemingly
all boys, played and horsed around in the dust while we tried to figure
out what to do. We could see back behind her former house a giaman selhaus
(a temporary structure), but soon learned that none of her parents or immediate
family were there. We were told that her mother and father left that morning
for town and hadn't yet returned. How could they do that? With a sick child?
Burned? Burned horribly? Beaten, for good measure? How could they do that?
I was angry in ten seconds. There were lots of people standing around, sort
of knowing but not really knowing why we were there - not that that meant
that they were interested in doing anything.
So, we went to go find the young woman and let her know that we'd be coming
back to help her, just that we wanted to try to make a point of this, meaning,
that we didn't just want to come, nurse her, and take off, without also
attempting to change the thought processes of her family and village, hopefully
to help speed her eventual return under better conditions. We walked down
a path through the compound, twisting around next to the creek, gardens,
and fences and found the little "house," made in this case of
bamboo posts and thatched roof and walls. There was no floor, and it was
exposed to the elements, containing a small fireplace. She didn't seem to
be there. Where had she been taken? Where had she crawled off to?
She was there, but we didn't see her at first. There was an orange Laplap
on the ground, and I didn't see it at first, but there was a human being
underneath it, a woman about age 26 or so, underneath it, and I saw two
ashy feet sticking out. What remains of her body was sunk down into pumpkin
vines. Had she been flung there? Had she crawled there to escape the fire?
Did we just interrupt a suicide attempt? It began to rain.
We saw her eyelids fluttering, but we couldn't rouse her from sleep, no
matter how gently but firmly we tried. Just as well. As we began to pull
off her clothes to attempt to investigate her condition, we found evidence
that suggested she was better off asleep. I counted 11 sores big and small,
some of which had healed over, evidence of past sores and perhaps tropical
ulcers. We bathed and dried her feet, then calves, and then tried as best
we could to bathe her up higher, but then found two very large burns on
her inside left thigh and right buttock, and we just crumpled in emotion
and anger. These were recent, and only just beginning to heal, it appeared.
She had absolutely, and I mean, absolutely no stomach whatsoever, and we
learned later that she had existed on water alone for quite some time.
Children were beginning to crowd around, then teenage girls, then male
relatives, and as best we could, shushed people away. Try as we might, we
couldn't even get anyone to loan us a bucket or saucepan to get water from
the creek to clean her with. We even offered to buy one. We found out later
that another family had apparently instructed people not to eat pumpkin
tops that were growing nearby, and that people didn't want to loan to us
a bucket that they'd not be able to use again . . . Eventually a village
"leader" showed up with a bucket, for which we thanked him profusely.
Her "father" eventually showed up, too, the bastard (I wanted
to choke him, to be honest - still do - and Cassandra felt the same way).
Immediately the fear became that if we took her to the hospital and she
died, her family would demand compensation from us (because clearly, right?,
we/IMR had caused her death). Anyway, as Maggie, Phili, and I cleaned her
as best we could (I'm sparing the gory details), Cassandra loading up soapy
rags, dispensing rinse-rags, and cutting strips of our t-shirts with which
to dress her wounds. There was no rousing her, although there were more
flutters of eyelids, so as gently as we could, we put on some loose-fitting
pants, gently stood her up half-way so as to put a clean blanket underneath
her, and laid her down, folding it over her like a mummy, and then the three
of us carried us to the truck and after some struggle, got her length-wise
into the back seat.
We took her immediately to the Emergency Department, and after some wait,
got a nurse to look at her, obtain some details, at which point, Susan began
to gesture with eyelids for water, which we gave her in small drips. A medical
orderly came finally to give her a tetanus injection, and we were able to
talk and coo to her, feeding her small bits of mashed papaya.
After a very long wait, a bloody attempt to get her onto a drip, and more
sips of water and bits of papaya, we got her into a bed and got her a codeine
tablet for the pain, as she was in considerable distress. Later we fetched
clean bed sheets, another blanket, more clothes, food, etc., from home and
brought them to her. She's now in bed 32, and we'll go see her today, too,
I hope. We heard that no one has yet to dress her wounds, a doctor has not
yet seen her, and we're not sure about pain medicine. The "good"
thing is that she has drunk enough to wet herself, and Maggie and Phili
were there to help her to the toilet. She cannot even sit up. She can't
weigh more than 75 pounds (30 kilos), and stopped eating a long time ago.
We want her to bounce back, but surely she will die in the next few days.
I confess to feeling guilty about attempting to revive her, but we cannot
and will not let her die abandoned in the pumpkin patch.
Another strange thing was that the following day, Saturday, Cassandra and
I met in the market a woman who had been among the 6-8 other adults standing
around the truck as we departed, who mouthed their thanks for our efforts.
We learned that after her adoptive family (therefore the "father"
will probably excuse his behaviour by saying that he was only her "adopted"
father) found out that she had been diagnosed HIVab+ and just watched her
go downhill. About three weeks ago she was put into that small banana leaf
house that we saw and just abandoned. She said that her husband/father (I
couldn't tell) was a pastor who had preached either to or at her (what's
the difference?) and had given her water from time to time. It's difficult
to tell what happened, fire-wise, given the conflicting versions, but clearly
Susan had been bashed up. She had broken skin and a swollen cheek on her
face, a swollen hand and leg. Clearly, she had caught on fire, and just
as clearly she hadn't been helped following, regardless of how the fire
was started.
Susan's story both does and doesn't represent Papua New Guinea compassion
very well. This story is repeated from province to province, village to
village, town to town, and to be fair, it happens all over the world.
As best as I can make out, "the issue" (that is, the alleged
"cause" of her mishap) was that she had been married once, her
husband had left her because of her antibody status (established how and
when, I have yet to determine), and then she was consigned to support herself
by having sex for money, at which point her health went down-hill, and her
social isolation increased. Of course, what to do about her husband, where
is he, who did she get infected by, etc., remain unaddressed questions.
All of this misery is gendered, of course. I know of no individual or groups
of marauding females bashing up, stabbing or killing men on account of their
real or putative HIVab status. No one bashes up HIVab+ men and THEN consigns
them to a haus pik, although non-heterosexual males in PNG are beginning
to feel the double-whammy of homophobia and AIDS-phobia.
Still, someone takes them in. As well, on the other side, the care taking
aspect will almost wholly be borne by females in various capacities. It
doesn't mean that all women will end up care taking (case in point being
Susan's situation in Kamaliki), but it does mean that the absolutely vast
majority of the caretaking that does occurs is engaged in by females, whether
a nurse, Maggie, or whomever.
The people just stood around, and I don't know which of the many little
boys standing around joking and playing in the dust were hers. What are
they thinking about mommy? What will happen to them? She probably rebound
a little bit, but she's going to die this week, I'm sure of it. I wonder,
too, what the long-term effects are on children of just letting die some
woman in the community, someone's mother, someone's sister, someone's daughter.
Are they thinking "oh, that's an AIDS woman," "oh, she was
a pamuk, so she deserved it?" What are the children taking from this?
What of the three Okapa mechanics who, probably because they are not "from"
Kamaliki, did nothing? How to channel the shame these community members
now (hopefully) feel at their abandonment of Susan?
I'm going to commit some man and womanpower from IMR to return to the community
and try to bring them together over this issue, to reduce their fear but
also teach them a few ways you can't get infected (that is, by eating food
grown nearby). How do I keep from strangling them myself, though? "The
case" just raises so many issues of fact and fantasy, truth and belief,
intervention and relativism, but as a person, as a raw human being, I want
to hurt them. That will not help, though, I know. This is not a rural/urban
issue, either. This place isn't but 10 minutes from hospitals, schools,
newspapers, and radio-stations. This is just plain old, and in this case,
inaccurate human thinking. What made me the most angry from a list of things
that made me angry was that when we took her away (folded into a blanket,
carried from the creek to the back-seat of the truck), the community standing
there expressed their heart-felt thanks, as if we'd lifted a burden from
their shoulders. Then her "father" walked the other way down the
road, carrying a shovel. The wife of the pastor said, however, that he had
told her that he had said of Susan, "em pei bilong sin bilong em,"
meaning, she deserved it, that it was the wages of her sin.
I wanted to strangle her, too, I confess. Susan has three children, and
was abandoned in marriage. Where's her husband's wages? The woman in the
market was to this day seriously was worried about eating foods grown in
the gardens nearby where Susan had collapsed. I should think it the other
way around; if the ground is now contaminated, it's because of how horribly
they treated her.
Really sad day, my friends, a really sad day. Hug your children, keep your
friends and family close to you, do good works, and by all means do something
about AIDS today. Open up talk about it. Break cultural taboos about mentioning
sex in public. Tell men that their violence is definitely not okay. Don't
hide behind relativism. Get angry at complaisance.
Challenge dogma that you know is false.
Lawrence
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