by Ali Hussaini
Greg Bush has a vivid memory from his experience working with amputees in Haiti.
“A woman walked for three days on one leg and a crutch to get a BK prosthesis,” recalls Bush, a Canadian prosthetist. “She slept out on the road. She can’t go away and return for a follow up. We expect them not to come back.”
Bush quickly learned that the most effective way to provide prosthetic services to such an individual was to do it all in one day: assess, cast, fabricate, fit, and send them on their way. This of course was not often possible. The reality of providing rehabilitation in a country with an unpredictable social infrastructure, political instability, a history of foreign intervention, and increasing poverty became apparent soon after Bush arrived with the Canadian team working with Healing Hands for Haiti. These complications gave rise to certain attitudes toward the rehabilitation professionals providing healthcare services.
At that time (circa 2004), there was no real local prosthetics infrastructure in Port-au-Prince or Jacmel. One of the local leaders, a Haitian Vodou priest, told Bush (who was stationed at the central fabrication facility) that although assistance is appreciated, the streets were now filled with garbage from the packaging material of supplies from foreign relief efforts. They were clogging the sewers and causing them to overflow. With no garbage pickup, some of the donated healthcare equipment and parts had to be piled up and burned (after the screws, bolts, and metal pipes were salvaged).
Unused parts take up space. “If someone takes these, they can become a target of a rival group,” says Bush. “They have something that they don’t need but can sell. We had to be aware of that.”
Supply and Demand
Two local armed guards were assigned to the guesthouse Bush’s team was staying in. Some of the exterior walls were equipped with barbed wire and glass shards from bottles jutting out of the concrete to deter theft of tools and materials. Even so, the equipment eventually had to be chained down and locked. The clinic was broken into the first day.
Sometimes the material came under threat before it even got to the clinic. “One day we had to pick up a crate of supplies at the wharf—plaster, plaster bandages, hand tools,” Bush explains. “The guy running the shipping depot would hold on to your supplies until you gave him some monetary incentive, or perhaps give your supplies to another group of foreign relief workers. We just decided to bring things to Haiti in large hockey bags to avoid this problem.”
This is the reality that people in Haiti live with and live through. This is their home, and the locals are trying to live by any means necessary. Sometimes it can rub foreigners the wrong way, but the Haitians haven’t the time to care. Nor should they be asked to.
In many developing nations, the ingenuity of those in need takes visitors by surprise. A medical grade assistive device, with all the material science research behind it, means nothing to the locals if the material to build it is impossible to source. Splints made of wicker or wood, slats of bamboo wrapped with twine—if they see utility in even part of the assistive device being provided, they’ll find a way to make it work. That’s the drive of the end user.
The material suppliers in the country? Well, they’re a different story.
“Plaster was always running out, plaster for casting. Plaster supply exists locally in Haiti, but it’s expensive to access. You need to hire a car, drive a distance, and then you’ll learn that the supplier prefers to sell to larger companies and builders.”
This is expected. The local businesses want to ensure that their regular customers remain regular customers, purchasing large amounts of their goods. They don’t need temporary relief workers creating a hiccup in their supply chain.
Attitudes Toward Limb Difference and Disability
Bush says a lot of the clinical maintenance work he provided was for lower limb prostheses—put a cushioned pad in the socket, redo some straps, the basics.
“Not many people would come in for upper limb work, which was good because we didn’t have the supplies to do the repair,” Bush says. “Or I would provide a functional hook, but they wanted a hand. Another lady received a pylon and SACH foot (solid ankle cushion heel). She wanted a nicer-looking cosmetic cover; she wouldn’t leave. If the donated hand we had was far too light [to match their skin tone], they wanted a darker cosmesis. They wanted to be seen without a disability.”
But concealing the prosthesis can be tricky. Donated parts come from companies and private donors. The luxury of choice for color, size, and materials is limited at best. For upper-limb prostheses, the visibility of disability is immediate and obvious. It can’t be covered by a pant leg. However, having an upper-limb prosthesis can lead to opportunities in society as long as it doesn’t look like a prosthesis. Appearance is important, or else the negative cultural attitudes dominate.
“Employers don’t want their workforce to look disabled there,” Bush says. “There was a lot of that, views related to employment, marriage, and shame. Some felt that they would never get married and no women would want them. Others felt that an amputation was a punishment, that God was punishing them for a previous crime they did, even if it was a trauma. And some felt that other people would mistake their amputation being the result of a punitive measure for a crime, instead of a road traffic accident.”
Some of the upper-limb recipients didn’t seem as bothered wearing their provided prosthesis. The individual’s profession and degree of social interaction played an integral part in whether they could function as part of society.
“The farmers didn’t care as much about it,” says Bush. “They don’t live around people; no one’s judging them. City folks, on the other hand, had the attitude of ‘No hand? Not going out. I don’t care if it does or doesn’t work, just make it look like a hand. Don’t put my weakness on display.’”
The parents and caregivers of those receiving a prosthetic device thought there was some merit in the work Bush’s team was doing.
“They had heightened expectations of what we were providing their family members, but it may have come from no real understanding of prosthetic specifics. But they seemed to think that there was a benefit in having someone agree that there was a problem. Someone was looking at them for the first time. Someone was paying attention to their kid.”
I asked if he thought he made a difference in Haiti.
“It’s hard to gauge feedback, because we’re only there for two weeks at a time,” Bush says. “You try to do follow-ups with the people you provided the devices for, but you have to do this through a member of a new team going down there. The situation keeps changing. The team keeps changing.”
Every frontline healthcare worker wants to know that their intervention made a difference. Even in the developed world, this is can be difficult: There are too many people in the urban areas, not enough healthcare workers in the rural ones. In the developing world, add the state of social infrastructure and continued poverty. These problems need to be solved first (or in tandem) before long-term improvement in healthcare can be achieved and delivered locally, by the people who live there for the people who live there.
Ali Hussaini is a Research Fellow with the University of Portsmouth. His work explores emerging medical interventions, functional assessment tools, barriers to new technologies and healthcare outcome measures for improved quality of life.