Living with disability in Guatemala.

In Third World countries around the globe, care and concern for people with disabilities has grown. Increased recognition of children's delayed development because of malnutrition is evident, and concerns for quality of life following life-sustaining medical treatment have been voiced. Awareness has led to a demand for special education and rehabilitation. This pattern of evolving concern is also evident in developing countries of the western hemisphere.

In Guatemala, for instance, special education and rehabilitation were started in the private sector by parents and charitable groups. Responsibility for such programs has shifted somewhat in recent years with governments sharing in program development and operation. Guatemala, Central America's most heavily populated country, offers a prime example of this shift to a more balanced public-private sharing of responsibility for improving the lives of disabled people. How one third world nation, such as Guatemala, responds to its citizens with disability may be significant for understanding disability in developing countries worldwide and could lead to a theory of social response to disability.

This study focuses on patterns of program development for the disabled in Guatemala and examines how government has been slowly increasing its participation in such programs. The research questions for this qualitative investigation were: 1. What is it like in Guatemala with disability? 2. How do Guatemalans with disability support themselves? 3. What services are available for individuals with disability in Guatemala? 4. How has the Guatemalans government participated in providing services for those who are disabled? 5. What are the patterns of program development and social responsibility for individuals with disability in Guatemala?

Method

This study is a component of a larger study (Couch, 1988) sponsored by the National Institute on Disability and Rehabilitation Research, the IBM Corporation, and Partners of the Americas. Conducted by the Programs on Technical Assistance for the Handicapped (PATH) division of Partners, the larger study examined employment opportunities for disabled youth in Central America. The overall research design was a purposive yet limited, exploratory, naturalistic survey conducted by a four-person research team (Guba & Lincoln, 1981; Patton, 1980; Whyte, 1984).

As with the other countries involved in the larger PATH study, data were gathered through interviews (Schatzman & Strauss, 1973) and observations (Pelto & Pelto, 1978) over an 18-day period by a four-person Guatemala team consisting of a Guatemalan private business consultant, a Guatemalan social worker affiliated with a rehabilitation center, an American college professor of rehabilitation and special education, and an administrator from the Alabama Institute for Deaf and Blind. Those interviewed included disabled individuals, employers, parents, and service providers in both the public and private sector (Miles & Huberman, 1984).

Respondents were chosen by the Guatemalan team members who used their personal networks (Goetz & LeCompte, 1984) to select those to be interviewed. Of these 28 individuals, 9 (32%) were individuals with disability, 3 (10%) were personnel directors of international companies with large Guatemala City operations, 4 (15%) were parents or family members of individuals with disability, and 12 (43%) were professional service providers from either the public or private sector. About half of the individuals with disability and their family members were from rural areas; the rest reside in the capital city. Contrary to trends the data later revealed, those individuals with disability who were interviewed were, for the most part, employed. They were probably selected because most had been served at the rehabilitation center where a research team member worked. They may have been selected just because they represented successful case histories. Perhaps quality rehabilitation facility services accounted for their overall employment rate, which was much better than the 13% to 16% unemployment rate of nondisabled Guatemalans (Alonzo, 1985).

Interviews by two or more PATH research team members were conducted in homes, offices, businesses, schools, or rehabilitation settings (Brenner, Brown, & Canter, 1985; Miles & Huberman, 1984). A standard open-ended interview guide was used, and field notes were taken by each interviewing team member. At the close of each day, team members met to discuss their individual field notes, share observations, and plan further activities (Williams, 1967). At the end of the data-gathering phase, team members met to analyze data and to prepare written responses to major research questions of both the larger Central American research project and the Guatemala study. Analysis was arranged topically (Taylor & Bogdan, 1984), guided by team members' field notes, entries from the interview guide, and the research questions. A written report was prepared by team members in a prearranged format dictated by the larger study (del Cid, Marino, Baud, & Couch, 1986).

Life with Disability in Guatemala

Guatemala is located directly south of Mexico's Yucatan Peninsula and shares borders with El Salvador and Honduras in the southeast. During the mid-sixteenth century, it served as the Spanish colonial capital of all Central America, then known as the kingdom of Guatemala (Woodward, 1985). It is now the region's most industrialized republic and boasts a population of 8 million people. However, according to Kurian's (1982) quality-of-life index, Guatemala rates only a 59 on a 100-point scale. Guatemala does have its problems. Unemployment is above 13%, adult illiteracy exceeds 53%, and over 38% of the nation's children are malnourished (Alonzo, 1984). Per capita income averages less than $2,000, and life expectancy is less than 60 years. About two-thirds of the population is rural. Many of these are Indians who live much like their Maya ancestors (Hawkins, 1984). Agriculture is the economic mainstay, with coffee, bananas, sugar, cotton, and meat primary exports (Alonzo, 1985).

Guatemala's approach to its disabled citizens is mixed. Closely knit family units care for and even overprotect their family members who are disabled. There are public hospitals, special facilities to treat those with infantile paralysis, military and social security rehabilitation hospitals, and a growing awareness of the need for special education and rehabilitation. Yet, many of those with disability are objects of pity, a source of family shame, and certainly not considered as mainstream participants of society.

Qualitative data provided by those interviewed for this study provide a glimpse of what living with disability in Guatemala is like. Personnel managers of Guatemalan-based international companies illustrate attitudinal barriers toward employment of those with disability. Professionals pointed with pride to accomplishments of special programs evolving to serve the disabled, but repeatedly emphasized severe resource restrictions limiting such services. Those with disability demonstrate a courageous determination to survive in a hostile environment replete with physical and attitudinal barriers, restricted opportunity, and prejudice. A few examples from the transcripts reveal these difficulties.

From Personnel Managers

In Guatemala, the attitude toward the handicapped is one of charity not employment opportunity.

If a handicapped person makes it in Guatemala, they must be an extraordinary individual.

As a general rule we prefer normal persons. When 50 normal people apply for one job, the disabled person does not have a chance. We must look after the needs of normals before thinking about the handicapped.

From a Disabled Individual

In Guatemala the handicapped are placed in a corner and forgotton

Most employers don't want to hire the handicapped.

From a Rehabilitation Professional

Parents often fail to send their disabled teenagers to school because of their shame.

Case Histories

The following case histories illustrate life with disability in Guatemala. These examples offer a picture of how the disabled survive, depict attitudes toward those with disabilities, and disclose the difficulty these people encounter in obtaining employment. Of the nine individuals with disability interviewed, three lived in rural villages or towns outside Guatemala City and six were located in the capital city. Names have been changed to provide confidentiality for those interviewed.

Enrique

Enrique is a 40-year-old paraplegic who uses a wheelchair to move about. Injured in the 1976 Guatemala earthquake, Enrique, the father of three, runs a small food stand attached to his home in Chimaltenango. He has started to weave gloves to supplement his income from the stand. Enrique's wife, children, and brothers farm a small plot of land. Their products are sold in the local markets. Enrique's average profit from the stand is 50 centavos a day, only a fraction of the average income in Guatemala. His wife earns a like amount from her sales at the market. A revolving loan from one of the churches provided the capital for the vending stand's initial stock. Enrique must make annual payments on this loan.

Facing deteriorating health, Enrique expressed concern over the future of his stand. The profits are so low that he cannot stock new items. The cost of some items has increased beyond the means of his small clientele. Enrique's business is on a back street which has only limited foot traffic. This location presents a serious obstruction to his business. Competition from other stands and larger stores makes Enrique's efforts to earn a living even more difficult. Yet Enrique works hard to make the stand a profitable venture. When he is ill, he must close the stand, thus cutting already minimal profits. He can no longer work all day and requires rest in the afternoon. He is concerned about the well-being of his family and what will happen when he cannot earn enough money to provide for them.

A man of spirit and determination, Enrique continues to work. His needs are growing and his ability to meet them diminishing. Yet, he works. He tries and continues to try despite the obstacles. He is a proud man with dignity facing an uncertain future. It would be easy to justify quitting, but Enrique will not quit. He has too much to lose if he does--his pride and dignity.

Lolita

Lolita a single, 34-year old with paraplegia is a lifelong resident of Chimaltenango. She lives in a traditional compound-type household consisting of several concrete and plaster buildings. A walled, fenced yard is devoid of grass, but replete with an array of brilliant Guatemalan flowers. The house has electricity but no running water. It is neat, but shows sign of wear. During our visit two quail rested in an open cage, a gigantic shaggy white dog pestered a small red cat, and chickens roamed freely about the yard. An orange tree was filled with ripe fruit.

Lolita lives with her father, mother, two brothers, and a sister. On the day of the interview, her mother was at the local market, and her father was working at a rancher's farm. Her brothers, a carpenter and a tailor, were also at work. Lolita and her sister were the only family members at home.

Following the earthquake in 1976, Lolita was treated at the Roosevelt Hospital in Guatemala City, some 25 miles from her home. She displayed a worn, aging letter outlining her diagnosis and treatment there in 1976. Later, she was given training in weaving at the Center for Education and Vocational Rehabilitation (CERVOC), and a Canadian charitable group donated a hand loom which Lolita still uses to weave sweaters. She can make two sweaters each day. Cost of materials for the sweaters, however, has risen dramatically in recent months, and now her sweaters must sell for about six U.S. dollars. Most sales are made to people in the town who know of her good work. She needs and wants an electric sewing machine to finish off her sweaters. Now, she must send them out and pay for the finishing touches.

In recent years, Lolita's life has been good. Through the efforts of Baptist missionaries, Lolita has started attending elementary school in her town. She also teaches home economics and handicrafts at the Baptist school every afternoon for which she receives 30 quetzales (about $10) monthly. She goes to the Catholic church and plays on a local wheelchair basketball team. Lolita says that some 10 to 12 other individuals with disabilities also attend the baptist school.

Lolita has problems getting her 9-year-old wheelchair repaired, and she broke her leg playing wheelchair basketball last year; but she appears to be surviving well and living a busy and productive life. Lolita's day consists of helping with family chores at home, study in the mornings, teaching at her school in the afternoon, and weaving each night.

Lolita has heard of a computer-training course in Guatemala City offered by the Guatemalan Institute for Vocational Training (INTECAP). She would like to attend, but says she has no place to stay in Guatemala City while she takes the training. She would like a new wheelchair and sewing machine, but believes her life is better than those of her quadriplegic and other handicapped friends who live too far from their school and church to attend. The bus that used to take them there has been broken, and there is no money to repair it.

Jesus

In the village of Patricia, 35-year-old earthquake victim, Jesus, lives with his wife and three children in a well-kept compound that includes Jesus's small shoe store. A paraplegic, Jesus opened a shoe store 5 years ago to replace a small grocery store that had not propered. He and his family also own a small plot of land outside his village. His 14-year-old son must leave school this year to work the land. Last year Jesus made some money raising pigs and chickens, but the economy does not make that feasible this year.

As we sat on the board veranda overlooking the dusty family compound, Jesus told us how difficult the shoe business was. He had problems finding good suppliers who would extend longterm credit. When a new supply of shoes is needed, Jesus's wife and older son ride the bus to Guatemala City to pick up the shoes. This method is cheaper than freight shipment. Inflation, however, has made the cost of shoes so high that people of his village have not been able to buy the shoes. There were no customers in the shoe store during the time the team spent visiting with Jesus and his family.

Jesus, however, lives independently with his family and is head of his household. He operates the store, supervises the farming, and owns his own home. A new cement-block wall surrounding his family compound attests to his relative prosperity.

Julio Julio is a young, totally blind, adult who graduated from the Committee for Blind and Deaf's school for Blind. He was trained first in the needle trades, but attended school at night and learned how to be a masseur. He got a job as a masseur at an army officer's club, but finding reductions by the government ended that position. Always wanting to improve himself, Julio studied at the university while he worked. He received a bachelor's degree. After 8 months of unemployment, he was hired at his present job in the Ministry of Labor's Office of Handicapped Employment. He says most employers do not want to hire the handicapped, but he has placed many different people with disabilities on jobs in the 2 years he has been employed there. Julio is now pursuing a master's degree in psychology. He says that handicapped people must accept their own abilities and limitations and that the general public must learn that handicapped people are capable of doing things and should be accepted as people and as valuable workers. Julio wants all Guatemalans to know about the Office for Handicapped Employment.

Pablo Born with spina bifida, Pablo is the product of a poor and troubled home. His father is an alcoholic, and his mother has a history of mental illness. Pablo and his four siblings were placed in an institution because the parents were incapable of rearing them. Pablo stayed in one of these institutions until age 15 and completed 6 years of basic public schooling. However, his emotional and social needs were not being met. Returning home at age 18, Pablo again found rejection. He was an unwanted burden on his family. He attempted vocational training, but failed. He was despondent and had periods of deep depression.

More recently, life has been better for Pablo. Pablo is mobile in a wheelchair and has good hand dexterity. He recently completed extensive new training and now helps build and repair wheelchairs in the CERVOC cooperative wheelchair manufacturing shop.

Jose

At age 18, Jose began carpentry training at the CERVOC rehabilitation center in Guatemala City. Because of his retardation, he had attended a private special education program for 7 years. Jose comes from a middle-class family -- his parents are university educated. He learned much and became a competent, pleasant, and well-adjusted worker in the rehabilitation workshop. His parents, however, worried about his working around dangerous woodworking equipment and associating with individuals from lower socioeconomic classes, so Jose quit his sheltered job and remains at home with his family.

Maria

At age 15 Maria was injured in the devastating 1976 Guatemala earthquake and became a paraplegic. After her release from the hospital, Maria was depressed and despondent and, for more than a year, refused to leave her house. Then she was talked into playing wheelchair basketball, and she began to live again. A few months later, she entered and completed a secretarial course as the top student in the group. For the past 3 years, this determined young woman has worked as a secretary in the Ministry of Labor's Office for the Employment of the Handicapped. She wheels herself 2 miles through busy Guatemala streets each day to get between her home and her job. Maria is pleased to have a job.

Roberto

Roberto was injured in an accident at age 16 and became a quadriplegic. Bright and perceptive, Roberto is a perennial leader of the Handicapped Christian Fraternity in Guatemala City. He lives with his brother and his brother's wife and children in a modest Guatemala City neighborhood. The family cherishes an older model Volvo that has a large international-symbol-for-disabled decal covering the rear window. Roberto is proud of his fraternity and its accomplishments, his government job, and the article for the handicapped in the nation's new constitution. Roberto related his own struggle to gain employment-- a struggle that took some 20 years. When he finally got a job as a government clerk, he described how he began his first day at work. The other people in the office were watching me. They had never before seen anyone try to type with an aid held in his mouth. I was so afraid! I remember thinking that if I failed, they would never again give a handicapped person an opportunity to work on a job."

Roberto was successful and has held his job over 5 years. He displayed the literature about his Christian Handicapped Fraternity and shared his dreams about a better future for handicapped people in Guatemala. Roberto envisions a future where all handicapped people--even those institutionalized--would belong to a single organization that would let the people know of their needs. He would like to see laws passed to promote the education, training, and employment of handicapped persons. He bemoaned the fact that so few people with disabilities can find jobs.

As these case histories illustrate, life with disability in Guatemala is not easy. The prevailing attitude toward those with disability is pity, charity, overprotection, or avoidance. The case histories emphasize the difficulty in obtaining employment. Each employed interviewee described this difficulty, and most had experienced long periods of unemployment. Despite these attitudes, the economy, illiteracy rates, inadequate health care, malnutrition, and poor sanitation, the case histories spotlighted successes. Determined individuals persevered and achieved varying degrees of independence, self-support, and happiness even though they lived with disability. Many of these case histories indicate that help from outside the home is required. Friends, public and private schools, churches, rehabilitation centers, and employment offices aided in the success stories.

Programs for Individuals with Disability

There are developing programs for children and adults with disability in Guatemala. In most program development, concerned parents and individuals provided the impetus to establish private schools and rehabilitation facilities for disabled children and adults. Guatemala's Fundsor School for Deaf, Goodwill Industries, and several schools for the mentally retarded offer such examples. The Committee for Deaf and Blind, with funding from a national lottery, has demonstrated how comprehensive and innovative a Guatemalan program can be when funding is adequate (Couch, Polanco, & Olson, 1977).

Another successfully established program is Guatemala's Social Security Rehabilitation Hospital, which has operated at full capacity for more than a dozen years. It is funded by a social security tax. A more recent government-funded resource is the Ministry of Labor's Office of Handicapped Employment. Several employees in this office have disabilities and are both sensitive to and persistent in pursuing employment opportunities for those with disabilities.

Program developments involving foreign aid may merit special consideration-- particularly those of the person-to-person Partners of the Americas program, the Washington-based private agency. Partners' involvement in the development of one rehabilitation center and in the evolution of Guatemala's special education program illustrates the potency of such small scale inter-country cooperation. Guatemala's partner is the U.S. state of Alabama. The PATH committee in Guatemala and Alabama have worked together for more than a decade to generate help for Guatemala's citizens with disabilities. The following descriptions of one rehabilitation center's history and of the beginning of Guatemala's special education program demonstrate how such partnerships can produce cooperative solutions to pressing needs.

The Center for Education and Vocational Rehabilitation

Following the 1976 earthquake in Guatemala that killed 23,000 people and permanently injured one-half million others, Alabama Partners of the Americas president and Birmingham News editor, the late John Bloomer, asked Guatemala, "How can we help?" The reply "We need a vocational rehabilitation center to accommodate the many earthquake victims from the rural areas whose huts fell on them during the earthquake, causing injury to their spinal columns and thus paralysis." (J. Bloomer, Personal Communication, February 14, 1978). Responding, Alabamians collected over $50,000, purchased a prefabricated metal building, and sent a team to construct it on the grounds of the public Roosevelt Hospital in Guatemala City. No operational funds were available, however, and the center struggled to survive. Through the efforts of its board, the Center for Education and Vocational Rehabilitation (CERVOC) has become a viable resource to many handicapped Guatemalans. Several CERVOC innovations may merit emulation.

The center is financed by private donations, gifts, and production activities. An annual raffle provides the largest segment of income. Christmas seals sold by the Rotary Club and handcrafted products sold at an annual bazaar and at retail outlets in local markets also help with the center's financing. A more recent income producer is the manufacturer of fine mahogany wooden bases for dishes, plant holders, and similar items.

In 1985 CERVOC began a venture to coordinate cooperatives for the handicapped. In one, an Agency for International Development (AID) grant permitted the establishment of a wheelchair manufacturing plant in a small building next to CERVOC. Two individuals who use wheelchairs manufacture low-cost wheelchairs. CERVOC provides business supervision and holds title to the equipment, but the co-op handicapped workers reap the profits. They pay CERVOC a small cooperative franchise fee or a percentage of each wheelchair sold. The market appears bright for the product, and the cooperative may create even more jobs.

In a second cooperative venture several graduates of CERVOC's radio-TV repair training program formed a cooperative to establish a repair shop. Partners of the Americas awarded a small-projects grant of $5,000 for this co-op project, providing initial employment for two paraplegic men.

A third, but smaller, venture is a cottage industry. CERVOC graduates who have returned to their rural homes have few or no markets for the specialty textile items they learn to produce on CERVOC looms. To help create jobs, CERVOC ships thread and other materials to homebound clients via Guatemala's extensive private bus lines that reach into almost every village. The bus lines deliver the materials without charge. The weaverman or woman makes the product on home looms, then returns the results to CERVOC via the private bus line. CERVOC in turn, markets the product and pays the cottage industry participants for their work.

These successful ventures evolve over a decade of conceiving new ways to create jobs for handicapped youth and adults. The program development continues. CERVOC was established by Partners of the Americas and continues to receive active support through small-project grants, technical assistance, and training.

Special Education

As noted earlier, special education in Guatemala had its origin in privately sponsored schools formed by parent groups and local physicians, philanthropists, and charitable organizations. Such schools have existed for many years, and school personnel have developed an interest in job placement as the handicapped students approach maturity. Several such schools have added prevocational units and adopted a work-study approach. Sewing, baking, machine trades, and service work are examples of these promising, but as yet limited, job development activities.

In 1984, at the request of Guatemala's Minister of Education, Eugenia Putzeys, Partners of the Americas provided technical assistance to assess special education needs in the national public school system. The assessment indicated high rates of illiteracy, dropout, and failure (Burdg, 1984). As a result of the technical assistance and other efforts, an office of special education was established within the Ministry of Education. Some 60 administrators, psychologists, and teachers were assigned to the program. Classes began in 1985, and some 1,300 special education students were enrolled. Fourteen newly appointed special education teachers were sponsored by a Partners AID grant for one-month intensive training program at Auburn University in Alabama (Guatemala Partners of the Americas, 1986), and some dozen Alabama special educators have provided Partners-sponsored technical assistance in Guatemala City classrooms. Plans call for expansion of special education into the rest of the country.

Conclusions

Living with disability in Guatemala is not easy. A declining gross national product reduces the number of available jobs. Poor sanitation, malnutrition, and limited health care have led to a disability incidence ranging from 12% to 20%. Because a majority of Guatemalans are illiterate, education and training for less physically demanding professional and technical jobs is not widely accessible.

Societal attitudes contribute to the difficult life of disabled Guatemalans. They are pitied, overprotected, ignored, or forgotten. Few see the disabled individual as capable, employable, or otherwise adequate. Guatemalans willingly give to street beggars, they purchase lottery or raffle tickets for charitable causes, but they have not yet adopted the attitude that rehabilitation is possible. A change in attitudes among the population is required before substantial opportunities can be provided to individuals with disability.

Because of the economy and prevailing attitudes, most Guatemalans with disabilities live with and depend on their families for livelihood. A sizeable number attempt to contribute to the family income by whatever means is available. A surprising number of these individuals have become self-supporting and hold full-time jobs. They have overcome the odds with determination with help from friends and relatives, and with assistance from a limited but growing number of programs designed for those who have disabilities.

Programs for individuals with disability appear to be evolving in a pattern similar to that of developed countries. First, those with disability are kept at home, cared for and protected by the family. Families with similar situations eventually band together to form an organization to provide a needed service: treatment, special education, rehabilitation, sheltered employment, activity, or recreation. These parent groups may evolve into organizations for special disabilities; they may involve others for financing, public information, and expanding programs of services. Then, at the encouragement of these organizations, governments belatedly join in special education-rehabilitation efforts.

Guatemala's older, more established programs are in the private sector, and most have their roots in parental concerns for children with disability. The Committee for Deaf and Blind, Goodwill Industries, and several private special-education school programs fit into this pattern. CERVOC, established in 1977, was an exception as it was organized in response to a need created by a natural disaster-- the 1976 earthquake.

Government entry into assisting in programs for the disabled in Guatemala was later, mostly during the past 20 years. The Social Security Rehabilitation Hospital-Rehabilitation Center is less than 15 years old. Several modern mental health centers are of the same vintage. Not until the 1980s, however, did the Ministry of Labor establish its Office of Handicapped Employment and the Ministry of Education begin providing special education in the public schools. If program development continues along these lines, more extensive government involvement, expanded programs in both the public and private sector, and a greater sensitivity to the needs and problems of those with disability can be expected. Among the concerns that must be addressed are such preventives as improved medical care, sanitation, nutrition, and safety in the workplace; greater educational opportunities for those with disabilities in the professions, skilled trades, and technological jobs; more advanced training for special education and rehabilitation professionals; and a massive public education effort to inform and change prevailing attitudes. The seeds of a comprehensive special education-vocational rehabilitation program in Guatemala have been planted. Expanded expertise, number of professionals, awareness, and training and employment opportunity coupled with prevention efforts should lead to full use of a long-neglected Guatemalan labor resource.

Acknowledgements

The authors wish to acknowledge the research contributions of Guatemalans Sylvia del Cid and German Marino and support for the study from the Office for Disability and Handicapped Research, the IBM Corporation, and Partners of the Americas.

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