Monthly Archives: May 2014

More about Anise

The Next Step with Anise
June 1, 2014

It has been encouraging to see how Anise and Mackenson have grow stronger since Mackenson was admitted to the University Hospital that Partners in Health opened in Mirebalais. I wrote about them earlier in the week. (See: http://www.apprenticeshipineducation.com/compliance/.) They still have a long way to go, but the signs are very positive. The sickly, lifeless infant we first brought to the hospital has turned playful and energetic. He still needs to put on some weight, but he’s eating now, and his diarrhea has slowed down, so there is every reason to thing that he will.

And it’s probably not surprising that Anise’s health seems to have improved as her boy’s has. She has been sickly almost since we met her. One of the things that delayed getting her baby to the hospital was the fact that she was too weak to carry him. She would have needed a neighbor or a family member to go to the hospital with her, and she wasn’t able to mobilize anyone. We eventually had our driver and Anise’s case manager, Nerlande, take her and Mackenson to the emergency room. He was admitted, and she has simply stayed there with him.

In their first days in the pediatric ward, she seemed to get worse. She was losing sleep, sitting up all night in an uncomfortable wooden chair next to her baby’s bed. She looked exhausted, and her feet started to swell significantly. One morning when I visited them, I happened to come as the pediatric resident was making her rounds. I asked her whether they had noticed Anise’s feet. The doctor responded that she had, and that they had tried to get Anise to go to the emergency room. They were, she said, worried that it could reflect a heart problem. But when Anise got to the emergency room, and had to wait to be checked in, she grew frustrated, worried about Mackenson, and she returned to the children’s ward. When the emergency staff called for her, she was gone.

The doctor told me the story, and I immediately thanked her and responded that we would see to it that Anise got seen, but that meant finding someone to sit with Mackenson for the time it would take for Anise to get through what are very long lines at the hospital, which is sometimes overwhelmed by the needs it serves. So I contacted Nerlande and another case manager on our team, Hilaire, and we went to Anise’s house to find someone from her family to help her out.

No one was willing to go. Anise and her children have been living with her father, Anice, ever since he got into a conflict with Mackenson’s father, Genson. Anice pressured Anise to come back to live with him, and she complied. But he has been unwell, and didn’t feel strong enough to go to the hospital to stay with his daughter and grandson. The other residents of Anice’s lakou, or yard, are his son, Anès, and Anès’s wife and children. Both of them said they couldn’t go either.

I returned to the hospital that evening, only to find that Anise seemed to be deteriorating. Her feet were continuing to swell. They were misshapen, and she was in pain. Part of the problem was the chair she had been sitting in for several days. The hospital has comfortable lounge chairs, with footrests that can be raised, for family members staying overnight with patients. Anise was entitled to one, but all the ones we could find in her ward were taken. I saw a healthy young man relaxing in one, and I asked him to let Anise use it, pointing to her obvious need.

He refused. He said he was sorry, but didn’t see why he should have to be uncomfortable while everyone else had a nice chair.

I got really angry. I don’t swear in Créole. I think of how silly Haitian young people always seems to me to sound when they swear in English, misusing bad language that they can’t quite pronounce. But I was pretty mad, and I’m afraid I made a little bit of a scene, using words I don’t have a lot of practice with. Fortunately, the other man was willing to swear as well, so the embarrassing scene was not all mine, even if I was probably the only one embarrassed.

The scene, such as it was, achieved three results. First, for the next two days, the man called me a shameless pig every time I walked by him. He then left the hospital with the sick person he had been there with. Second, Anise smiled for the first time since I had gotten her to the hospital. At first, I thought she was simply amused, just as her case manager and the nurses seemed to be. But it eventually became clear that she liked the fact that I was angry on her behalf. Third, and most importantly, as soon as I left, the nurses scrounged up another recliner, which Anise has been in ever since.

But we still needed to find someone to go to the hospital to stay with Mackenson while Anise sought care for herself. Frustrated at our continued failure to mobilize her family, Hilaire started talking to neighbors, saying in his exasperation that we would pay someone willing to go right away. We finally found a woman, helped her make her own childcare arrangements, and then took her to the hospital. She spent two days in the pediatric ward, together with Anise, and Anise got through the hospital’s lines. They couldn’t find much wrong with her – anemia, some kind of minor infection – and as sickly as Anise had first gotten since we first met her, she has been improving markedly.

Meanwhile, we knew we had another problem to help her face. She will not be in the hospital with Mackenson forever. His improvement has been even more rapid than hers. But we could not imagine how she would flourish if she simply returned to the same living situation she had grown sick in in the first place.

We wanted to see whether we could patch things up between her and Genson. His was clearly committed to helping her as the mother of his child, but we were not sure whether he was willing to get back together. We felt that any help he offered would continue to go to waste unless she moved out of her father’s home. We have a lot of evidence that suggests that Anise’s father Anice is a big part of her problem.

Here, things get complicated. We felt that Genson was open to much more than just distant support, but Anise’s position was initially unclear. She was coming to understand that her own family was doing nothing for her. Her only help during her sickness had come from Genson and the CLM team. But her father had told her that if she and Genson got back together he would never speak to her again. And Anise said that her mother, who was living in Port au Prince, working as a housekeeper, agreed with her dad.

So Nerlande called the mother, and it turns out that she was more open than Anise believed. The first positive sign was that she quit her job in Port au Prince the very day she learned of Anise’s situation, and she rushed back to Mirebalais to sit with Anise at the hospital. She explained to us that she had returned home to take care of her child. She also mobilized her older son, Anise’s brother Jean Claude. He is not Anice’s child, but lives just a few hundred feet away. He had been distressed to see her sister’s deteriorating condition, but hadn’t been sure how to interfere between her and her dad.

As soon as his mother said that she was going to take responsibility for Anise, however, he felt entitled to act on his mother’s behalf. He told Nerlande that he wanted us to arrange a meeting between him and Genson, so the four of us sat together one afternoon. His wife, who is Genson’s older sister, was with us as well.

Jean Claude told Genson that he hoped that he and Anise would get back together, and that he and his mother would back them in the face of opposition from Anice.

But Genson hesitated. He reaffirmed his commitment, but was worried about bringing Anise straight into his own home. He was afraid of creating the appearance that he was after the stuff we had given her, which was in Anice’s hands. Madan Jean Claude agreed with her brother’s hesitation, and added that she didn’t think that the time was right for them to get back together. Anise was still too sick to do anything for herself.

The discussion went in circles, until Jean Claude then came up with a compromise. He would give Anise a spot on his land where Genson could build a little house for her. Anise and her mother would move into the new house, and stay there together. Genson would help them out, but would continue to live in the same little shack he built when Anise left him.

That left us with one piece to resolve. Genson and Jean Claude were willing to provide the lumber the house would need, and Genson was ready to do the work. But they needed roofing, and the tin we had given Anise was still on a half-built house in her father’s yard.

So I said that we would come the next day with a team and take responsibility for taking the roofing, along with the livestock we had given Anise, and bring it all to Jean Claude’s house, where Genson would be responsible for it. The two men and Madan Jean Claude all agreed to this proposal. But we all also agreed that we could do nothing without knowing what Anise wanted.

Nerlande went immediately to the hospital to talk to Anise. We couldn’t think of such a plan unless she liked the idea. So Nerlande sat with her and her mother, and they discussed the matter. Anise liked the idea so much that she asked us to bring her to the yard when we sent our team to take her tin roofing. She wanted to clear all her possessions out of her father’s house so that she wouldn’t have to return.

We made our plans to return the next day. We called on a couple of extra case managers. When we walk into a situation of potential conflict, we like to appear in numbers. It is safer for everyone. So there were five of us – four case managers and I – who walked into the yard with Anise, and explained the situation to her father. One of the case managers started to remove the tin. We had invited a skilled builder from the neighborhood to do the work. He’d be faster and better at it than we could be. But we think it is important for us to start the job. That helps remove all responsibility for it from the builder.

Anice was furious. As Anise started collecting her things, he told her that she had to give him her birth certificate. He was finished with her, but he was the one that had given her the birth certificate, so it was his right to take it away. Anise was unsure what to do, but she quickly got the bag with her most important possessions – like her own birth certificate and those of her kids – into Jean Claude’s hands. He whisked them away, and by the time Anice knew what had happened, he was in a losing argument with Jean Claude instead of with Anise.

But he kept on arguing, making a lot of noise. In a sense, it was the best thing that could have happened, because his obvious unreasonableness turned the gathered spectators against him. His son, Anès, eventually came. He is husband to another CLM member and they live in a house they share with Anice. I was worried about what he would think of it all. Whatever his position, we would have to keep working with him on behalf of his wife. But he started arguing with his father on our behalf. We know for a fact that he was part of the conflict with Genson, but whatever the source of that conflict, he appeared to have seen that Anise will be better off with Jean Claude and Genson than with his father and himself.

So we are pleased with the way things are turning out. We believe in Genson’s goodwill and his capacity to help Anise start moving forward again, and we think that they have strong and reliable allies in Jean Claude and his wife.

In a sense, we are now more worried about Anès and his wife. If we are to help them – and they are struggling very badly, too – we will have to continue to deal with Anice. We will have to either repair the damage we’ve done to our relationship with him or at least reduced his ability to get in his family’s way.

Compliance

Anise and the Question of Compliance
May 23, 2014

I just finished reading a really good book by Paul Farmer. I think that most people I know will have heard of him. He’s widely admired as a doctor who joined Partners in Health in Haiti in the ‘80s, and helped to turn it into the international powerhouse it has become. Though Partners in Health has collaborated closely with Fonkoze for many years, and though I’ve worked extensively with their wonderful staff since I joined the CLM program, I’ve never met him. Hope I do some day.

The book I read is called Infections and Inequalities. Farmer writes about AIDS, HIV, and Tuberculosis, and how epidemics of such diseases are shaped by a larger global epidemic of inequality. Effective therapies become ever more available thanks to advances in medical science, but are often inaccessible to the poor, who are the diseases’ main victims. Farmer points out that, especially in the case of tuberculosis, the poverty of its treatment in poor environments is a threat to everyone, poor and wealthy alike. Half-treated or poorly treated cases of simple tuberculosis can turn into drug-resistant ones given time, and those drug-resistant cases can then become outbreaks that spread beyond the poor communities they emerge in.

But the way an insufficient attention to tuberculosis among the poor can threaten some “us”, too, isn’t really his point. He wants us to think more seriously about the reasons that are offered for not providing expensive medication to sick people who are poor. He writes of claims that are made about the cost effectiveness of expensive drug regimes in environments of intense poverty. Some say that we should focus instead on broader development initiatives, that we are better off treating poverty itself rather than the particular problems it exacerbates. We could combat a lot of poverty with the money that the most advanced drugs for HIV require.

Farmer will have none of such talk. He argues that it’s a false choice. An example he offers to display its falsity involves the lack of access to expensive second-line TB drugs in Peru at a time when the Peruvian government was spending hundreds of millions of dollars on fighter jets and even more to service its debt to banks in wealthy nations.

He also talks about those who cite evidence of poor compliance with drug regimens in some poor settings. It is argued that, again especially in the case of TB, providing expensive second-line drugs to TB patients is downright dangerous since they don’t follow though with the instructions they receive and, so, are especially likely to nurture increasingly resistant strains of the disease. Farmer asks us to look carefully at what this poor compliance consists of, and he points to studies that show that high-quality treatment made convenient and affordable doesn’t run into compliance problems.

“Compliance” is one way we could label an issue that we face all the time. It can be hard to convince our members to change their habitual behaviors in ways that we know will serve them well. We fight hard to get our members to use the water filters we give them and to keep their surroundings clean and to give up their habitual bare footedness. These all represent simple decisions they could make that would be certain to improve their lives. But they are all decisions that are hard to get many of our members to make. Many fail to comply with the advice we provide.

But, in line with Farmer’s argument, we should ask ourselves whether framing the question by talking about compliance is really constructive. Anise is only one example, but she’s the one who happens to be on my mind these days. She’s a single mother of two from Niva, a large area immediately south of downtown Mirebalais that stretches along both the national highway and a major local road that leads all the way to downtown Saut d’Eau. Her first boy’s father abandoned them both to their fate long ago, but Genson, the father of her second boy, who was born shortly after Anise joined our program, still lives close by and supports Anise and their son Mackenson as much as he can, even though he and Anise are no longer together.

Genson regularly sends her such money as he is able to support their child. That should, I suppose, go without saying. After all, Mackenson is his child, too. But it doesn’t go without saying in Haiti. Our program is filled with children whose fathers take no responsibility for them. Like the father of Anise’s first child. But Genson isn’t like that. He’s committed to Mackenson. The problem is that Anise’s family uses any money that Genson gives her to by food for them all: her father, her brother, her sister-in-law, and their kids.

We brought Anise and Mackenson yesterday to a mobile health clinic we organized in Venis, a remoter area farther to the south. It wasn’t really near her home, but we told her she’d need to come because Mackenson has been sick. As soon as Wilfaut, our driver, dropped off Dr. Luc, who ran the clinic, in Venis, he drove back to Niva to collect Anise and a couple of others who needed attention. We knew there was no chance she’d be able to get to Venis by herself, just as she had been unable to get Mackenson to the hospital in Mirebalais. When they arrived, Dr. Luc didn’t really examine either of them. He just to a quick look at the obviously sick infant, and told us to get him to the emergency room immediately. So Wilfaut sped off with Anise, Nerlande, and Mackenson.

As they were walking out the door, someone asked Anise very pointedly how she could have allowed her baby to deteriorate to such a degree, and she burst into tears. As weak as she is, she had to hold herself up herself by clutching a support post as she cried. Nerlande grabbed one of her arms – Anise was carrying Mackenson on the other – and she led her to the truck.

For a couple of weeks, Anise’s case manager, Nerlande, had been trying to pressure Anise to bring her baby to the hospital. The baby had been sick: weak and with persistent diarrhea. But Anise never went. Going to the hospital would not be a simple matter for her. She herself has been unwell since before Mackenson was born. She can’t really eat, and we don’t really know why, so she’s weak. Carrying her baby for a day is more than she can manage. She’d need a neighbor’s help, and she hadn’t been able to recruit anyone to give her a hand. Nerlande had been providing instructions, but Anise had not complied.

Working with Anise has been hard for Nerlande, and she’s already had to be creative. Early after childbirth, we discovered that Anise was too weak to nurse him. She was producing no milk to speak of. We got her to see a doctor. I had taken her to the hospital a couple of times myself on the back of my motorcycle, but she wasn’t getting better. We also started buying formula to reinforce the inadequate nutrition that Anise could provide her boy. The milk initially worked wonders. Mackenson quickly grew both in size and in liveliness. All this while Anise, herself, failed to improve.

Nerlande came to believe that part of Anise’s problem is her separation from the baby’s dad. Genson is a poor, hardworking man willing to take responsibility for them both and even to help with her older child, who is not his. But when a conflict erupted between him and the rest of Anise’s family, particularly her brother, she chose to side with the latter. She let her brother and father drive Genson from their home, which is on her father’s land. And no amount of peacemaking – at least to this point – has been able to bring them back together.

We can’t pressure her to rejoin Genson, even if we suspect it would be the best thing for her. She and I last spoke in the children’s ward in the PIH hospital in Mirebalais. She sat, cradling her child, explaining she was happy to see that the swelling in his feet had gone down some. The ward nurse had just expressed herself to me less optimistically. The hospital staff cannot yet speak of progress, she explained, because though the baby had already been with them for a couple of days his diarrhea continues.

But as Anise spoke with me she explained the problem. Genson argues with her too much, and she can’t stand the stress. She needs to feel at peace. At the same time, her parents have each separately assured her that they’ll never speak to her again if she gets back together with Genson. Apparently, his family looks down on hers, and they’ve made secret of that fact. They hold his family’s attitude against him.

In any case, Anise has a lot to manage and has very few resources – financial, personal, social, or otherwise – to manage it with. Staring soberly at the barriers before her, one cannot reasonably frame the fact that she does not follow directions in terms of compliance.

There is some hope, though it seems born almost of despair. In her first three days at the hospital with Macken, Genson visit a couple of time, bringing money each time to ensure that she can find something to eat. The hospital itself will provide food for her baby while he is there. Her own family came on once, and it was only to ask her for money, saying that they had nothing to feed her older boy.

None of this is lost on Anise. Sitting in the chair in the hospital, wakeful in her fear for her little boy’s life, she’s been turning her situation over in her mind. We don’t want her to feel forced to return to a man she is not attached to, but we do want her to feel able to make a decision that she feels is best for herself and her boys. I’m hoping that, when they leave the hospital, she will decide to sit down with Nerlande and Genson and try to work things out. We may have to meet with the two families as well.

But this is all just to say that the context within which Anise is stuck making her choices is very far from innocent. Her poverty, her poor health, and her family situation all enter into a calculus that frames her live choices for her long before she can think of making them. Until we can help her neutralize some of the aversive factors that shape her reality, we cannot reasonably speak of her “compliance” with our well-intentioned advice or of “choices” that she makes at all.

Safine and Ti Pijon

Safine and Ti Pijon

April 28, 2014

Safine and Ti Pijon are neighbors. They live in Redout, an area just above Trianon on the road from Mirebalais to Port au Prince. Ti Pijon is an older woman, with children and grandchildren in her care. Safine is a mother of eight, but she’s much younger than Ti Pijon. She also is new to the area. She grew up in Boucan Carré, but moved to Redout when she got together with Maxo, the father of her youngest kids.

Safine and Maxo shared a house on rented land, but Safine’s dream was to have a place of her own. She worked hard to build a comfortable four-bedroom house for herself and the kids on the rented land, but eventually decided to sell it piece-by-piece so that she’d be able to buy land, and she bought a small plot, right near Ti Pijon’s house at the end of December. It took her some time to build her new, one-room house on the plot, and in the meantime she and her children slept in a corner of Ti Pijon’s front room. They had gotten to know each other through their participation in CLM, and Ti Pijon had decided to do her fellow-member a favor.

It was a really big deal, because Safine had nowhere else to go. And the friendship they built in the months they spent together was good for them both. If one had food, both families enjoyed the meal. Safine’s children took to calling Ti Pijon grandma, and Ti Pijon’s children behaved as though they had found a second mom.

Shortly after Safine bought the land, her relationship with Maxo degenerated. There was violence, but she managed to throw him out. The final straw was when he had come to Ti Pijon’s house drunk, and fought with Safine there. Safine went to court, and though she eventually decided not to press changes, Maxo and his family had to agree that he would leave her alone for good.

But just after the trial, her relationship with Ti Pijon started to fall apart. Ti Pijon had avoided the trial, and rumors had come back to her that Safine had said that Ti Pijon had come between her and Maxo by telling him that she had been sleeping outside of her home when he had thought she was staying with Ti Pijon and the kids. The fact is that Safine had begun avoiding sleep in Ti Pijon’s home out of fear of Maxo. She would leave her children there each night, and join them after daybreak. Ti Pijon had also heard that when Safine moved into her just-finished house, she had complained to other neighbors that Ti Pijon was saying that she had her own house now, that it was time for her to go.

Soon, they were no longer on speaking terms. And they were each telling their young children not to walk the fifty feet to the other woman’s yard. When Safine started a little trade in homemade doughnuts, she wanted to offer a few to Ti Pijon’s littlest boys, but Ti Pijon grew angry at the older one for accepting the gift.

Their case manager, Hilaire, watched the relationship unravel, and he could hardly believe his eyes. The friendship between the two had been exemplary. It had been the sort one could use as a case study to teach the importance of solidarity among the ultra poor in their fight to escape extreme poverty. And now they showed all the traditional Haitian sign of hostility, short of actual violence. Hilaire decided he had to act, so he asked them to agree to meet with him, and he asked me to come along.

I started the meeting with a little speech. I recounted the history of their friendship as I understood it. I said that we all knew how much Ti Pijon had done for Safine, and that we knew Safine was sincerely grateful as well. Theirs had been a friendship I felt I could talk about anywhere in the world if I wanted to explain the sorts of things that make CLM work. I had come because Hilaire had asked for my support as he worked to figure out whether we could help them repair the breach that had opened between them. I couldn’t pretend to understand where their hostilities had come from, but I hoped we could help them find a better way to move forward. Hilaire then said that we wanted to listen to each to see whether we could figure out what had gone wrong.

Ti Pijon then started to talk. She is a church-going, Christian woman, she explained, so when she saw Safine’s problems, she welcomed her into her home. She had offered what she could, and only wanted to apologize because the fact that her little shack had only one door made it necessary for her to enter the front room, which she had given over to Safine, anytime she wanted to go into or out of her house. She was sorry.

She had supported Safine even to the point of caring for her kids at times when Safine was on the run, hiding in other neighbors’ houses to avoid Maxo’s drunken rage. The night after their last fight, he had insisting on sleeping in Ti Pijon’s house with his children even though Safine had fled. Because Ti Pijon has no husband, she decided she had to move into a neighbor’s house for the night to avoid any appearance that she had spent the night with Maxo.

Then she had heard disturbing rumors. Safine was, she heard, putting her down behind her back. Safine was blaming her for the end of her relationship with Maxo. Ti Pijon would go as far as exchanging greetings with Safine, and she would do her neighborly duty if Safine or Safine’s children were sick. But they could never be friends again. As it stood, she had not decided to stop saying, “Hello,” to Safine, but Safine had stopped saying “Hello” to her.

I asked Ti Pijon not to say “never.” Haitians say, “demen pa pou nou.” That means, “Tomorrow does not belong to us.” It’s a way of saying that the future is not in our hands. I told her that I was happy she would agree to exchange greetings with Safine, and that for the rest she should just follow where her heart guides her.

Safine spoke next. No one could claim, she said, that she had forgotten how much she owes to Ti Pijon. But things had changed. Ti Pijon had listened to rumors, and let those rumors come between them. Ti Pijon had begun avoiding Safine, and had instructed her children to avoid her and to stop playing with Safine’s children as well. She was not the one who had said that Ti Pijon had come between her and Maxo. She was glad to be rid of the guy. It was Maxo who had blamed Ti Pijon. She had not claimed that Ti Pijon had said that it was time for her to move into her own house. She had said that another neighbor had told her so. She could never forget what Ti Pijon had done from her, but she had heard from another neighbor that Ti Pijon had said Safine shouldn’t talk to her anymore, and so she had stopped saying “Hello.”

Hilaire listened to them respectfully, but then he started to speak again. He said that he would always talk to them with the greatest respect. Ti Pijon could easily be his mother, and Safine his sister. But he had to tell them that they were both in the wrong. They had let a bunch of ill-meaning neighbors spoil their friends by listening to rumors when they should have been listening to each other instead. “Yo di,” or “They say,” was coming up in everything that they said. Yo di that Safine had complained that Ti Pijon had spoiled her marriage. Yo di that Ti Pijon had said that Safine shouldn’t greet her anymore. If the two of them would stop listening to rumors, they might go back to being friends. And they both had experienced just how valuable the friendship could be.

The women listened. They scowled, but they listened.

And finally something must have happened inside Ti Pijon. She had been sitting with her back turned distinctly in Safine’s direction, but as they rose, she grabbed Safine around the neck and started tickling her. “You like tickling me, now we’ll see how you like it.” The two women were laughing and crying at the same time.

Hilaire had to stay with them for their regular weekly visits, but I went off. When I saw him that afternoon, he said that Ti Pijon had shown up at Safine’s house with food before his half-hour with Safine had passed. His peace mission had been a success.