Today we spent the day chatting with clients and staff at Sahara Michael’s Care Home. It seems like almost every staff member has a story about how they came to work at the place. Auntie Jennie, a counselor, told us all about her therapy work with injected-drug users/HIV-positive clients before mentioning that her own two daughters had also been users (they’ve been clean for several years now). It hit the four of us really hard: the reason this place is so successful is that it’s literally run by people who are empathetic in the way that only fellow sufferers can be.
I’ve found this time and time again: perhaps surprisingly, the lowest of the low in society are often the cleverest. The reason they are so marginalized in life is not because they are innately stupid—not at all. We would be fools to assume that. It is because of other things: chronic poverty, early drug exposure, broken families, or some mixture thereof.
Chatting with clients was eye-opening. In public health, we always talk about something called “rapport-building.” Paul, Emma, Sej and I have gotten quite a bit of experience in that area in the past 10 days or so, visiting different sites and interacting with HIV-affected individuals and health workers. I like to think of this as friend-making, because first you have to truly be someone’s friend before you talk about sensitive issues. You should know their name, and where they come from. What do they like to do, see, eat? Relate to them; you’d be surprised to know that you can relate to a commercial sex worker, or an MSM (man who has sex w/ other men), or an injected-drug user. We are all made of the same stuff. Reach out, touch them. Run your fingers through their kid’s hair like you would for your own niece. Ask them what THEY think, and listen as they tell you. Some people go in to fix problems in public health. But if you go in looking for Problem X, you will find it whether it’s there or not, and you’ll go about fixing it. Meanwhile, you totally sidestepped Problem Y, which was a much bigger deal. If only you’d asked and listened.
I spent quite awhile talking to a cool guy named Felix, an HIV-positive ex-film producer who’s been at the care home for three years now. When I first saw him, he seemed slightly aloof but also eager to talk. He spoke English, so I pulled up a chair while Sej was chatting with Urmila, another client (check out her blog, or Emma’s, for more on her and her adorable little bacchi Anjali). The first thing you notice about Felix is that he’s a pretty sophisticated guy, with a British accent and a very cultured way of carrying himself (a bold statement since our only interaction occurred in a wood hut sitting down). He has intense, shining eyes and looks right at you when he makes a point. He has a spinal condition that has him in a wheelchair, and he urinates into a bag. He’s a staff member at the care home; he sits in the hut at the front gate and answers the phone. He says that in his former life in films, he had more than one opportunity to go to the Cannes Film Festival. Answering phones is not his cup of tea, but Felix has adapted to this new life. He says he’s seen the best and the worst that life has to offer, and now he just takes each day as it comes. Before Sahara, he faced discrimination at government hospitals because of his positive status, but here he’s well looked-after. His family visits once a year. He tells me that it’s important to adapt to whatever environment you’re in. If you don’t have electricity one of these days, what are you going to do? he asks me. Be happy with it, and be ok without it.
We also met Om Prakash, another staff member manning the front gate. He has lost most of his front teeth, and one leg is significantly shorter than the other, so he walks with a limp and has a stick. But that’s not at all what you notice first about Om Prakash. Even yesterday, what struck me about him is the big smile on his face whenever your gaze meets his. It turns out he’s been a drug user since he was ten years old, and came to Sahara after a foreigner saw him smoking (maybe hashish, or some other drug) and brought him to the care home. Of course, he’s been here ever since.
One of the most frustrating things about IDU is that chemists are not regulated here in India, the way they are in the US. Anyone can go into a pharmaceutical store here and request phenergan or some other drug, which they can then mix with water or something else to make an injectable cocktail. This is how Auntie Jennie tells us it’s done among the IDU community. They would use smack, she says (people call it brown sugar here), but it’s so expensive that they fall back on injected-drug use. They’ll inject anything, and when their arm and leg veins are all useless for injecting, they end up using the bottom of the foot, or the groin—the most dangerous place. They develop massive abscesses (she describes them as being so big you can put your hand in there, and I saw such scars on a user, Pasandsingh, at the drug de-addiction camp last Friday). They’ll inject into those abscesses, they need the drug in their bloodstream that badly. When those abscesses burst, it’s mostly a fatal situation…these are burst nerves we’re talking about.
Harm reduction seems to be the name of the public health game in India. Among these high-risk people, who engage in risky behaviors and are among the most desperate people in society, it is very difficult to encourage them to stop their high-risk behavior just like that. There is a long period of mental rehabilitation that must go along with the physical component (which is resolved much more quickly). There’s a very high relapse rate. During withdrawal periods, IDUs are also much less likely to use clean needles, because they need that high and they need it Right Now. They’ll just use someone else’s equipment in the heat of the moment. Connected to this issue is lack of adherence to ARVs and TB treatments. These require discipline and hygiene, two things that IDUs generally lack. They are, Auntie Jennie says, the first two things IDUs are taught at Sahara. No one is given medications to treat their underlying health problems (HIV, opportunistic infections, etc) until they’ve been through rehab…
Why all this focus on such marginalized populations? Why are we visiting these special populations when there are so many mainstream people out there suffering, whose problems are probably much harder to cure?
As I said, these are the most desperate, needy people in society. They have great abilities, but they’re on the wrong track for some reason. They come back again and again, wanting to change, after having hit rock bottom. And I mean rock bottom. See what they are capable of once rehabilitated? Philip, from yesterday’s blog, is now the program director. What a level of commitment!! Today we just learned that Dr. Deep Gupta, the medical director I blogged about yesterday too, is also an ex-user. What a loss it would have been for all the HIV-positive patients who’ve sought help from Sahara if someone hadn’t shown him patience and empathy! Not to mention that in a country of one billion people, a marginalized group is still made up of a sizeable population!
A human life is a human life. No matter what your personal beliefs are regarding sexual practices or substance abuse, each person is a human being worthy of all the love and care that you yourself need and should have. That law in itself is justification enough for Sahara’s bottomless empathy. Yet another poignant lesson learned by example here in Delhi.
On the sightseeing front: now that we’re in South Delhi, we can do all the “glamorous” stuff after work (ahh, Bapu, but I still miss you). We went to Café Coffee Day this evening, right after bargaining at the Dilli Haat (a crafts marketplace). I learned how to bargain! I’m actually not bad at it. Surprisingly (to me), bargaining is pretty fun, even though I’ve always disliked it. Uh-oh. Another shocker: I passed up a chance to buy animal products for dinner at Dilli Haat, because I just got used to eating whatever’s in front of me. Wow.
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