Guatemala is a country of many languages and cultures, the largest and most populous of the Central American nations. It is a country with a terrible history of internal conflict and injustices. The signing of the peace accords in 1996 ended 36 years of civil war, during which time an estimated 200,000 people died or disappeared. The indigenous Maya population, who make up about half of its people, are poorly provided for by the government, and face much discrimination. Guatemala ranks 120th out of 170 countries on the UN human development index. Many indigenous people live in rural areas, where there is little to no access to basic health care services.
Danielle working with client in Guatemala
Population Health
The indigenous Maya population is extremely disadvantaged in terms of living conditions and resources. In small rural towns in the highlands where the Mayan population is concentrated, houses are made out of earth floors, concrete blocks and tin roofs and have a wood-burning oven. Families are large, and there are usually many people living in a very small space. Children and adults with disabilities lack adaptive equipment and often spend most of their time in their beds, or more often on the ground.
In terms of employment in the highlands, the men mostly work in the fields, cultivating coffee, bananas and corn, while the women often stay at home managing their households. Other possible trades for men include carpenters, shoemakers, bricklayers, and construction workers. Some women sell fruit at fruit stands, or make textiles to be used for skirts and aprons sold in the market. Many also make hammocks, wall hangings and other goods to be sold to tourists. The main food consumed is maize-based tortillas, beans, chicken, and fruit such as mangoes and bananas. The making of tortillas is a daily chore for women. Some families also own small restaurants and set up their offerings in the street at lunch and dinner time. Families also sell beans and nuts, avocados, soft drinks, live chickens, and other goods on local market days.
Primary and secondary school education is not free in Guatemala. Parents are required to pay school and material fees monthly. As a result, many families simply can’t afford to send their kids to school.
Disability and Rehabilitation
There is not a lot of information available on the number of people with disabilities in Guatemala. Causes of disability include violent crime and domestic violence, work-related accidents, poverty, and injuries sustained during the civil war. People with disabilities have few human rights and face much discrimination from employers and society as a whole.
For many Mayans, disability is viewed as a punishment from God. It appeared that families often hid their relatives with disabilities because of fear of what other people would say. In addition, families often overprotect their relatives with disabilities. People with disabilities rarely have access to adaptive equipment or special care.
Transportation systems are generally inaccessible to people with disabilities. On Lake Atitlan in the highlands, one form of transportation is by small boat across the lake, a trip that is made often to neighbouring towns in order to sell or buy goods at other markets. Getting into the boat is a difficult task even for the able-bodied, and practically impossible for anyone with a physical disability.
Pick-up trucks are often used for transportation between neighbouring towns. In the truck, everyone hoists themselves up into the back and spends the ride standing up and clutching the sides. Transporting an individual in a wheelchair involves lifting them into the back of the truck and attempting to secure them over bumpy roads and hills. Not only does this require the assistance of many people, but persons in wheelchairs are often charged double fare due to the amount of space they require.
In many small towns in the highlands, the environment itself is rife with physical obstacles that limit accessibility. Obstacles inherent to the basic infrastructure of the towns include cobbled, bumpy roads, slippery hills, trash, mud, and steps to enter everywhere. People with disabilities who were fortunate enough to own or receive donated wheelchairs, crutches or walkers made do with the often lamentable condition of these pieces of equipment, while others are confined to their homes or forced to crawl through the streets on their hands and knees. The weather extremes in Guatemala further complicate the situation. For example, in the rainy season, the roads are often flooded or extremely slippery.
Employment opportunities are very limited for people with disabilities in Guatemala..
Personal Experience
I was fortunate enough to be able to spend nine weeks this summer adapting and adjusting on a daily basis to a place which challenged me in every possible way, and taught me to think differently about the world and my place within it. My time volunteering as a physiotherapist in Guatemala was an incredibly enriching experience, one which I will never forget. Knowing that I wanted to be somewhere where I would have the opportunity to communicate with people in their own language, a friend pointed me in the direction of the website for Centro Maya Xe’Kiyaqasiwan, a rehabilitation centre in Guatemala, and I felt that I had found the right place.
The Centro Maya Xe’Kiyaqasiwan was created to serve a population of children and adults with disabilities in the village of San Juan la Laguna, on the shores of the beautiful Lake Atitlan. It is located in the Department of Solola, in the Highlands, where the traditions of the indigenous peoples are at their strongest. A 3 hour journey from the capital, it is a town most easily reached by the many small boats that depart frequently from Panajachel, the largest city on the shore, and call in to stop at the many villages bordering the lake. San Juan la Laguna, surrounded by towering volcanoes, is a tiny village of hilly cobbled streets, with a population of 10,000, all of whom are indigenous Maya. The women and girls wear traditional Mayan costumes - beautiful, vibrantly coloured hand-woven skirts, aprons, and shirts - and everywhere there are chickens running, stray dogs fighting, music blaring, children shouting and playing football in the square in front of the church. The Mayan dialect Tx’tjutil is the first language, but most people speak Spanish as well. The village is very poor.
The obvious beauty of the surroundings contrasted sharply with the abundant evidence of people struggling to eke out an existence throughout a lifetime of toil and strife. Whatever inconveniences I temporarily faced were laughable compared to the struggles of the people around me, and I realized how much ease in our lives we take for granted in the West. Centro Maya Xe’Kiyaqasiiwaan is located at the bottom of a long hill in a one-story building with a tin roof and concrete and dirt floors. There is an open-air classroom and playing area, a small office, a physio room, a kitchen, a sink and toilet in the back and a yard filled with equipment in various states of disrepair. The path leading into it is cobbled and rough.
The Centre is run by a committee of parents and led by a director who is the mother of one of the children attending the centre. Obtaining financial assistance and support from the government is a time-consuming and often fruitless effort. Her meagre salary, as well as those of the teacher, accountant, and caregiver, a busy woman who cooks, cleans, and takes care of the children, are paid by donations from past volunteers. There are usually a few foreign volunteers at any one time, who help out with programming, fundraising, and any other task which is required.
Most of the children who come to the Centre on a daily basis live in San Juan. Their parents are either unable or unwilling to bring them to the centre each day, and so transportation is one of the biggest tasks for the volunteers. There are also many children who live in the neighbouring villages of San Pablo and San Pedro who would attend the centre but for lack of transportation.
The Centre makes do with the little money it receives from foreign donations. The children, about 25 or so, are fed twice a day on a budget of about 4 US$ per day. Many of these children, especially those with more severe disabilities, do not get fed often at home. My visits to their homes were a shock as I encountered the difficult conditions in which they lived. Families often consist of eight or nine children, and the simple fact is that the needs of a child with a disability are not a priority for parents faced with the task of feeding and clothing their family. Children were often left on the ground or in bed for hours at a time, and left the house only to be taken to the Centre. Those who did have wheelchairs often lacked appropriate restraints, and were tied into their chairs with pieces of cloth. Their donated wheelchairs had seen better days, and were missing essential pieces such as lateral supports, cushions, or brakes.
Faced with a lack of resources and equipment, it was up to me to get creative with what we did have, and come up with solutions to make these things work. The physio room contained: a stationary bike whose seat height and resistance could not be adjusted, a strapless supine stander, various crutches and walkers, 2 therapy balls, 2 small wooden benches, a mirror, an old doctor’s examining table, and an old mattress on the floor. There were some donated baby toys which I was able to wash and use during therapy sessions. Some of the kids did have old physiotherapy files, but rarely did they have a diagnosis listed. Many had never been seen by a doctor and for some I would be the first health care professional that they had visited, as many parents were simply not able to take their children for expensive medical consultations in a larger city.
The children had various disabilities. I also saw many adults who would show up at the Centre, having heard that there was a foreign physiotherapist in town. Unfortunately many of these people could not come frequently as therapy usually meant time away from jobs selling handmade souvenirs on the street to tourists, and others did not have the transportation money to come from the neighbouring villages (about 20 Canadian cents per ride). Those that were unable to make it to the centre due to mobility or financial constraint I would see on a regular basis in their homes. The days were busy, unpredictable, and physically demanding: it was a lot of lifting kids up and down off the mattress on the floor. Never before had the concept of good body mechanics been paradoxically both so important and so fruitless! In addition to the kids with physical disabilities, there were other children and young adults who came to the Centre who had facial deformities, attention deficit disorder, or undiagnosed learning difficulties or developmental delay. These children attended the regular school in the mornings and came to the Centre in the afternoons. The volunteers and teacher engaged these kids in schoolwork, crafts and games.
It was quite quickly apparent to me that what we take for granted here in Canada – access to specialists, corrective surgeries, adaptive equipment, and availability of rehabilitation services – were simply not available to the vast majority of the population in Guatemala. I encountered many children whose families could not afford to buy them a wheelchair, and whose mothers were forced to go about their daily tasks carrying their disabled child tied on their backs while cradling infant children in their arms. Hemiplegic children went without orthotics and bracing. Problems that can often be solved in the West, such as clubfoot, scoliosis, or leg length discrepancy, caused a great deal of misery and pain for people. When footwear was a problem, and orthotics were not available, I would try to consult with a local shoemaker to have him make a lift or a pair of shoes out of more supportive material. Other local resources included the carpenter who was invaluable in creating a frame for the mattress to raise it off the floor, and with whom I discussed building seating and accessible tables for the children.
Although it was wonderful to be able to achieve many small successes, these occurred in the midst of serious and on-going challenges. One challenge is the lack of local physiotherapists and occupational therapists available to work at the centre. The centre does not currently have any local therapy services and is dependent upon foreign volunteers. It would have been great to have been able to work in partnership with a local therapist in a mutually beneficial learning environment, and therefore have long-term carry over of the exercises and therapy programs that I had developed. I tried to ensure that future untrained volunteers would be able to provide some support by leaving clearly pictured exercise programs and suggestions for therapeutic activities for the children. However, because volunteers rarely stay for longer than 1 or 2 weeks, this means that the children can’t expect regular care. There was no Guatemalan who I could train to do the exercises, as the people working at the centre were so busy with other duties. However, I tried to capitalize on any opportunities for education such as thinking about biomechanics when doing daily lifting and transferring techniques.
Another challenge is in the area of community outreach. Although I tried to include parents who attended the centre with their children in their exercises and positioning suggestions, encouraging carryover at home, I never met the majority of the parents of the children who attended the centre daily. In addition, there were many children in the surrounding communities who would possibly have benefited from physiotherapy intervention but who I was unable to reach due to lack of time and cultural issues. Developing a home outreach program geared towards providing therapy in the children’s homes with more carryover in terms of partnership with parents and other caregivers would be a major goal for the future.
When I look back at my experience, it is amazing to realize how much of the language I learnt, and how as a physiotherapist working in isolation, how much I had to rely on my own professional decisions. Not a day went by when I didn’t wish that I had the support and knowledge of the many health professionals that I knew at home. I learnt how difficult it is to live up to the trust and faith that people, without knowing the first thing about me, had placed in my hands.
Indeed, whatever I may have been able to offer to the people of San Juan la Laguna, I know that I have received so much more in return. It is indeed eye-opening to realize that the vast majority of people in the world exist on so little; that our lives of technology, material comforts and relative security are truly not the norm.
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