A View from the Room for Incurables
November 20, 2010
A couple of days ago, we posted the letter that Rodrig had dictated. Today, we will begin to reflect on the situation described in the letter. Here, we outline simply how Rodrig and Reynald came to know Joegodson and become his good friends.
Joegodson fell ill in the fall of 2008. It started with a cough. He lost weight and strength. He began coughing blood. After awhile, his coughs filled his mouth with blood. As the blood left his body, it took his strength along with it. He moved from his tiny room in Delmas 19 to be with his family in Cite Soleil. Normally, Joegodson is wiry, finely muscled. However, as the disease drained his body of blood and energy, it began to foreshadow death. That was not a sight that surprised his old neighbours in Cite Soleil. Tuberculosis is common. But Joegodson’s imminent death aroused the neighbourhood. He was popular in the community. He could make angry people laugh.
And so every neighbour had some advice for Deland on how he should deal with his son’s malady. Those who know the slums of Port-au-Prince will immediately recognise the dynamic. Every concerned neighbour presented himself or herself to tell Deland what he should do to save Joegodson. People tried to help according to their best information, based alternatively on science, oldwives’ tales, hearsay, personal experience, and just guesses. Whatever the advice, most people managed to deliver it with a sense of certainty. Underneath it all was goodwill. Deland was distraught in the face of his son’s impending death. The voices became a cacophony of discordant advice. He could not hear even his own inner voice in the maelstrom.
Chen gen kat pye, men li ka mache nan yon sèl chemen. A dog has four feet, but he can take only one path.
Meanwhile, Joegodson continued to lose weight and vomit quantities of blood. At one point, he went totally blind for several hours. His little sister took him by the hand to find a private space to defecate. His life appeared to be approaching a very early end.
Deland could manage no more than to feed his son the minimum for survival. Desperate, he chose to accept the advice of a neighbour who offered a rationale. There was a local hospital run by a Catholic congregation of brothers. Of course, it was known to be inferior to the private institutions. But there was no chance of admitting Joegodson to those. Deland could not pay. Besides, Joegodson was too weak to travel anywhere. Chabine, a woman who had watched Joegodson grow up, would take him to see if the brothers would accept him.
Despite his condition, he needed to join a long line of patients to enter this hospital that was, in fact, known to take people who were unlikely to leave alive. People line up for everything in Haiti, even to die. Joegodson did not have the strength to stand. He sat on a rock while Chabine saved a place in line. Finally, they got to the front and Joegodson was admitted.
The rooms inside the hospital separated the patients according to gender and the gravity of their disease. The staff looked at him and assigned him to the room for men expected to die or, if not, never to recover. However, he would now have access to antibiotics as long as he remained in the hospital.
When he entered the room, he felt a familiar twitch in his lungs. Each patient had a bedpan. As the cough neared, he asked a patient if he could have his bedpan. He immediately proceeded to fill it with blood, before he was placed on the bed.
In the bed next to him was a young man (Reynald) who said cynically, “Look, another dead person has arrived.”
Earlier that day, Reynald had watched the staff remove his previous next-bed neighbour. They changed the sheets in honour of Joegodson; but the patients knew what it meant that he was led to that spot. People spent their last minutes on that bed, reserved for those at death’s door. But patients throughout the room constantly expired. The staff members were always carrying a body away. The dying were lined up outside to take their place. It was like SONAPI.
Joegodson soon got used to the place. He made friends.
Zakari and Rodrig were both paralysed from the neck down as a result of having been hit by MINUSTAH bullets in 2004, as Cite Soleil rose up against the coup d’état that overthrew their president, Aristide. Zakari was fourteen years old at the time. He was part of the active resistance. Rodrig was simply a street vendor trying to earn enough money to pay for his education. Both were struck in the spinal column. Reynald, now in the bed adjacent to Joegodson, was approximately the same age. He had been crippled when a car that he was repairing slipped from its jack and fell on his stomach. There were many others in the room for incurables, including elderly people who were simply blind. They had been there for decades and had never seen an eye specialist. Joegodson came to realize that, with the minimum of medical care, they might escape the hospital. But there was not that care.
The patients understood how the hospital operated. In fact, as we will see, they saw the institution more clearly than the staff dared. In his months there, Joegodson not only made great friends, but he came to learn much about the business of humanitarian aid in his country.
Christian brothers from all over the world staffed the hospital. This was one of their homes established to care for the most vulnerable members of poor populations throughout the world. None were doctors and most had no medical training except for what they learned on the job. They were stationed here for determinate periods of time and then were sent to other countries by their congregation.
The entire hospital was served by only one doctor. He normally worked in the private hospitals. He was paid to visit on Wednesday mornings and offer a cursory diagnosis of some of the patients. He would suggest treatment. It was clear to the patients that the brothers ignored any costly treatment plan. No one was sent out for tests. Beyond pills and bandages, there was no medical equipment.
Each day, one of the brothers would put bandages on patients like Rodrig and Reynald who, even then, had open blisters all over their bodies. Under the bandages, the sores were so deep that sometimes the flesh was visible. Like everyone else, the boys ate poorly. Rarely did they have protein and vegetables. Rice was the staple and the staple was often the meal.
The patients in the incurable section were confined there because there was no place to go. Some were terminally ill; others were unable to survive on their own. None had a contact with the means to assure real medical attention.
Over time, Joegodson and Zakari learned to respect each other. Joegodson came to be very fond of him. Zakari was difficult to befriend. He was full of rage and his lower body was paralysed. When Joegodson arrived, Zakari was about eighteen years old and had been in the hospital since 2004. A MINUSTAH bullet had struck him in the neck. The MINUSTAH bullet that had paralysed Rodrig was errant; the one that struck Zakari hit its intended target. The young people killed in the street fights with MINUSTAH for control of the poor neighbourhoods in the wake of the coup d’état were often left to die in the streets. It was risky to take the dying to private hospitals where the doctors normally refused to admit them. Zakari was only fourteen years old and small. His parents were able to convince the brothers that he was an innocent victim of the violence. It was true that Zakari was a victim, but he was never an innocent. He knew what he was doing.
Zakari was a strong-willed young man whose body had been taken from him. He had been popular with the girls of Cite Soleil. In the hospital, they continued to visit him. He knew that he had lost his sexual appeal. He had been fearless and dynamic in the face of heavily armed occupying forces. Now, he sat in a wheel chair, dependent on others for every aspect of his survival. To understand his response, we have to place ourselves in the room with the incurables.
While a steady stream of poor Haitians came to the room for incurables only to die, others were there for months, years, and even decades. Those patients – like Zakari, Reynald, and Rodrig – passed their hours confined in that large room with each other. They were always together, all in the same boat. They experienced the hospital as a total institution: all aspects of their life and death were dependent on what happened in this room. So, they paid close attention. They developed a sophisticated understanding of how it functioned.
The puzzle of the hospital came to them one piece at a time. Although some pieces were missing from the game, they were able to put together those they had to reveal the image of the hospital. We can look at the pieces separately and then see if we put them together in the same way as the patients did.
The hosptial was drab, run down, and dirty. Stray dogs walked in off the street and wandered the rooms. It was everywhere evident that the hospital – like the patients – survived on the absolute minimum of funding. Sometimes, foreigners would come by to visit the squalid hospital. One of the brothers would lead the visitors through the rooms. They spoke English and were from the rich countries north of Haiti. Never could they speak to the Creole patients, whose lives would be explained by the brother leading the tour.
When Joegodson arrived, things changed. He spoke English well enough to translate for the patients. The visitors were able to stop on their tour through the hospital to connect directly with the patients through him. Those communications added a few pieces to the puzzle of the hospital and the place of the incurables in it.
Once, a group stopped to chat, through Joegodson, with Rodrig, Reynald, and Zakari. They were compassionate Americans who asked if there was anything they could do to help the boys. Zakari leapt to the occasion. Could anyone send him a gameboy? He wanted some fun. Rodrig and Reynald wanted a portable DVD player so that they could watch films. All of them were looking for distractions from the terrible inertia of their lives.
The visitors were equal to their word. Once home, they bought the items that the boys asked for and sent them to the hospital. However, the brothers delivered only two cheap radios to the boys.
Much later, one of the same visitors, John, returned to the hospital. Without the brothers, he first went to the room for the incurables to see how they were getting along. Joegodson was still there. He told John, who represented the American visitors, that the boys had not received the DVD player or the gameboy. John said that they had sent them with some other things. From the things they sent, only the cheap radios had made it to the boys, although they had left instructions on the intended recipients of the gameboy and DVD player. So, the boys set a trap for the brothers.
John returned before long with a brother who led him through the room for the incurables as usual. This time, Joegodson said nothing. John asked in front of the boys whether the brothers had given them the gameboy and DVD player that they had sent. The brother said yes, everything had been distributed as requested. John made no indication that he knew that the brother was lying. They decided that, in order not to make things even more unpleasant for the boys, John would explain to the other visitors from his religious community that, henceforth, they should give any gifts directly to the patients.
All gifts to the hospital passed through the hands of the brothers. The incurables saw that the brothers had their favourites among the patients, especially those who were not confined to the incurables’ section. More significantly, their favourites were concentrated in the rooms for women. To the Haitians, it made little difference whether the brothers had sexual relations or not. However, they also knew that such relations were forbidden according to the brothers’ religious vows. They guessed from the evidence before them that the vow was often kept in theory only. The brothers must have been facing their own boredom, stuck in the slums of Port-au-Prince until they were transferred. A number of them made liaisons with certain of the patients. They appeared to be using material enticements to make themselves more attractive to certain female patients. Consequently, they ensured that nothing valuable be wasted on the incurables, especially the incurable men. It was easy to deduce what must have happened to the DVD player and the gameboy.
Zakari was a keen young judge of human behaviour. Once he understood how the system worked, he found a way to manipulate it to his benefit. It was surely more satisfying than a gameboy.
One of the brothers (let’s call him Brother Mohamed) was a native of the Middle East. He was different from the other brothers in his dealings with the patients in a range of ways. The patients describe how they came to see that Brother Mohamed was special. They tell us why they came to connect with him.
Brother Mohamed didn’t speak down to the incurables. For instance, they remember one of the brothers who was being trained to insert a needle for an intravenous treatment that a couple of the patients required. Normally, the brothers were trained in such basic medical treatment on the job. The patients were the involuntary volunteers in the training process. But the patients who had been there for some time were experts in their own treatment compared to the brothers passing through. There was one Haitian patient who was young and small. He was also brilliant. The brother-in-training was hopeless at inserting a needle and was tearing apart everyone’s forearms trying to jam it in. So, the little Haitian took the needle from him and showed him, on his own arm, how to insert it correctly. In typical fashion, the brother-in-training responded with pique. He was annoyed at the idea of taking instruction from this little Haitian. The brothers drew a distinction between themselves and the destitute Haitians in the room. The brothers were simply superior and did not accept advice from the poor. Brother Mohamed was not only wiling to learn from them, but he honestly saw them as equals. He changed the dynamic of the staff-patient relationship.
Most brothers appeared to see the hospital as a passage. They didn’t invest in it. Brother Mohamed engaged himself thoroughly with the patients. They came to love him.
Neither institutionally nor personally did the other brothers see any benefit to be gained by spending time with the incurables. The incurables understood this. How did they come to see their place in the institution?
There was always a line-up of dying people waiting to get into the hospital. The incurables who had been there for some time saw the sickest people arrive only to die and be led out again. There was a steady stream of dying people entering one day and being carried out dead shortly after. It infused the room with death.
To overcome the fear of death that had taken hold of the room in those circumstances, the boys invented a game. Every bed in the incurables’ room was numbered; Joegodson was in bed number 24. Each time someone died, they marked down the bed number and the time. Then they plotted the progress of Death through the room to determine when and where It would strike next. They would announce to everyone that, based on their calculations, Death was planning to strike bed number 16 at 7:23 am. And so, the unfortunate soul in bed 16 would make sure that the premises were vacated just in time. Before long, all the incurables were playing. Once they confronted Death in this way, It no longer had the same psychological hold on the room. Death, as a fact of life, remained.
The incurables noted that the brothers were accepting people who were a hair’s breadth from death. They seemed to be allowed into the incurables’ room simply for the honour of expiring there. The patients also noted how the brothers were careful to register each of these deaths. Inevitably, they began to speculate that the hospital was getting funds based on the number of patients it was seeing. If a patient came in just to die, the institutional numbers would go up, but the costs would be minimal. The funding, but not the costs, would increase.
And so the incurables came to see themselves – in relation to the hospital – not as human beings, but as numbers in the bottom line of a business. The fact that it was a non-profit organization did not change the reality of operating on market principles. When the incurables were put on display for the passing tourists, it was to raise funds for the business. The accumulation of those donations depended on convincing the tourists of the desperate need of the institution. There was no incentive to improve conditions if that would lead to a reduction in revenue.
In those circumstances, Zakari entered into business with Brother Mohamed. Although he was confined to the room for incurables, otherwise the lowest priority of the institution except when potential donors passed by, Zakari was intimate with a number of young, attractive girls from Cite Soleil. They also wanted to improve their material conditions. Before long, Brother Mohamed, Zakari, and the girls all found a way to improve their conditions. In short, Zakari negotiated with Brother Mohamed on behalf of his old girlfriends. We are not privy to the nature of the relations that developed between Brother Mohamed and the girls; it appeared that the brother simply appreciated female company. They offered to spend time with him. They showed him around the city. Their vital presence seemed to balance the desperation of the hospital for him. In return, he would help them materially in small ways.
Zakari, otherwise despondent, began to come to life. Brother Mohamed was able to channel to him the small perks that otherwise were never wasted on the incurables. The gloomy fog evaporated. Zakari was in business and even improving the conditions of others. A bond developed between Brother Mohamed and Zakari. More generally, all the incurables appreciated that Brother Mohamed did not pretend to be better than them. The entire affair took place in the context of the recognition of human needs. The bond turned into a very special friendship between Zakari and the brother.
When Brother Mohamed was transferred out of Haiti last year, Zakari fell into an inconsolable depression. By then, Joegodson had been released, having found the means to pay for his tests and treatment in the private system. He returned to try to comfort Zakari, but it was not possible. He passed away in a state of despair, at about nineteen years of age, last year.
“Zakari had the air of a great person,” says Joegodson. He was little and paralyzed, but he understood people and power. He knew what he wanted and what others wanted. “He was crushed when he lost Brother [Mohamed].”
This is obviously a small piece of the story of the hospital. It points towards a more thorough and honest account of how humanitarian aid is actually organized in the global economy. We will look at it from other perspectives in the future.