A Research Study on Individuals with Disabilities in the Maasai Tribe of Tanzania Sheryl Feinstein, Ed.D. Augustana College Abstract: The purpose of this qualitative study was to investigate the life of individuals with a disability in the Maasai Tribe in Tanzania. The study consisted of 68 participants. Individuals with a disability did not engage in tribal traditions, go to school or seek modern health care. Key Words: Tanzania, Maasai, disability EditorÕs Note: This article was anonymously peer reviewed. The Maasai, of all African tribes, have always held a certain mystique. The Western World has referred to them as Ònoble savagesÓ (Thomson, 1885) admiring their offensive warrior skills, aggressive cattle raids, and semi-nomadic lifestyle. Men wearing red tartan shukas carrying wooden staffs and women with shorn heads and huge disc necklaces proudly drift across the plains herding cattle. They are a close knit group, politically and economically isolated from mainstream Tanzania. In spite of pressures from the government, missionaries, and society in general, they have remained true to their pastoralist way of life. Cattle are still considered sacred and their lives are spent migrating (Maasai Association, n.d.). The Maasai society is based on a patriarchal system, where men enjoy absolute power and women are considered dependents throughout their lifespan. Women are not allowed to speak in front of men, girls are viewed as financial assets when arranging marriages, and polygamy is the norm. It is not uncommon for a man to know exactly how many cattle he owns, but have no idea how many children he has fathered (Spear & Waller, 1993). Their unconventional lifestyle and independent spirit have often brought disdain and bigotry from other tribes. Laws to protect the Maasai are often ignored and not enforced. For instance, laws were established to allow them cattle migration rights to Ngorongoro Crater, a wilderness area. But the Maasai have virtually been banned from the area, threatening their survival during the dry season (Maasai Association, n.d.). Life for a Maasai with a disability is particularly problematic. Throughout history there has been a practice of killing and hiding mentally and physically impaired people. The Alaskan Inuits, the Woggeo of New Guinea, and the Massai Tribe of Africa have routinely rid themselves of what they considered to be a burden to their community (Davis, 1995). Whether it was death, sterilization, or limitations in jobs and education, the individual with a disability has faced and still faces prejudice and discrimination. The number of individuals with a disability throughout the world is often underestimated. It is believed that at least one person out of ten has some type of disability (Kereto, 2007). The 2000 Population and Housing Census in Tanzania affirms these figures, reporting that 10% of Tanzanians had a disability. The most prevalent forms of disability in Tanzania were physical (28%), visual (27%), hearing (20%), intellectual (8%), multiple impairments (4%), and other (13%) (Kapuya, 2004). Unfortunately, the census is the only source of information about the number and types of disabilities in Tanzania (United Nations, 2001). In fact, almost all of Africa is void of any research concerning individuals with a disability as evidenced by the following statement by Arne H. Eide, ÒThere is little data on disability in low-income countries in general. A few overview articles describe existing data as suffering from poor quality, lack of comparability and limited applicability. Disability statistics in low-income countries has so far largely comprised of impairment based prevalence figuresÓ (Eide & Loeb, 2005, p. 2). One of the rare studies conducted on individuals with a disability in Africa was done by Elly Macha (Hershey, 2001). She researched the impact of disability, gender, and access to education in Tanzania, focusing primarily on visually impaired women. She discovered that German measles was the main culprit in causing blindness: children were not being inoculated against the disease. The reason for the lack of inoculation was not neglect or ignorance; it was the distance needed to travel for health care. Currently, the majority of individuals with a disability live in rural areas making all types of health care, including inoculations, difficult to access (Mandesi, 2006). Macha (Hershey, 2001) also found that individuals with a disability faced economic and educational barriers. It was particularly difficult for them to acquire start up money. Banks refused loans to them, considering them poor risks due to their lack of collateral. The lack of capital made it impossible for them to purchase land or open a business. They were also often denied education. Sometimes this was due to a lack of transport from their homes to the school, and other times it was due to a lack of properly equipped schools for children with special needs. In fairness, education is an issue for all Tanzanian children, not just individuals with a disability. Tanzania has created legislation to guard and protect individuals with a disability, but it is rarely enforced (Kapuya, 2004). A plea from Reginald Mengi, Chair of Person with Disability Trust Fund, reflected the frustration of those with a disability when he said, ÒThey are tortured, humiliated, kept indoors, shame to familyÓ (2001, p. 1).There are also periodic reports of parents killing their children with a disability. Methodology The purpose of this qualitative study was to investigate the life of individuals with a disability in the Maasai Tribe from the Mondouli District of Tanzania. The Mondouli district was chosen because of the abundance of Maasai residing in the area and the location of a rehabilitation center for individuals with a disability in the district. A Research Permit from the Regional Administrative Secretary Arusha, The United Republic of Tanzania, Prime MinisterÕs Office was obtained. Government officials from each district accompanied the researchers to every village to ensure credibility and to eliminate fear, as the lead researcher was white. Everyone on the research team was Tanzanian, except one American. It was believed that the prevalence of Tanzanians involved in the study was a strength and increased the ability to get a more accurate and honest account from the participants. Amina Mollel, a Maasai woman, led the interviews. Individual interviews were conducted with persons with a disability, their family members, and the Director of the Center for Rehabilitation in the district. Participants from all three wards in the Mondouli district, Simanjiro, Makyuni, and Manyara, were included in the study. Purposeful sampling was done in order to target villages with individuals with a disability in their community. Government officials were particularly helpful in identifying the participants. All participants were Maasai. The study consisted of 68 participants with and without disabilities; there were twenty-one individual interviews and five focus groups. All participants were living in a subsistent manner, raising cattle. Only one person with a disability had graduated from primary school. The majority of family and community members without a disability had attended primary school; 28 had graduated from primary school. The Director of the Center for Rehabilitation had graduated from Form 4, not yet achieving a secondary school diploma. Her standard of living would be considered middle class in Tanzania. Participants with a disability included nine individuals with physical disabilities, two with intellectual disabilities, one person with a visual disability, and two individuals with multiple disabilities. Of the fourteen individuals with a disability, nine were male and five were female. Age was difficult to determine, as the majority of people admitted they did not know their age. A few offered an age, for instance, one elderly woman said she was 35 years old, although she clearly was not. Therefore, approximations were used to determine age. Three of the males and three of the females were between the ages of seven and ten, four males were older teenagers, two men and two women were middle aged, and one man was elderly. Family members of individuals with a disability, as well as community members participated in the study. All family members ranged in age between 25 and 65. One wife, two mothers, one grandmother, and three fathers were individually interviewed. Focus groups were used to interview community members. The Director of the Center for Rehabilitation was a middle-aged woman. Community members were adults ranging in age from 25 Ð 65 years old. The gender composition of the focus groups follows: Group 1 consisted of eight women, Group 2 had ten men, Group 3 had seven women, Group 4 had twelve men, and Group 5 had ten men. A modified form of convenience sampling was used to select members from the community. Leaders in each village, along with interested individuals, gathered to comprise the groups. The researcher had no power over the establishment of the groups; instead the chief in each village wielded absolute power. The interviews were semi-structured centering on the following themes: perceived cause of disability, family and community attitudes and treatment of individuals with a disability, and health and government assistance. Before interviews began, traditional greetings were exchanged at each village to create a positive atmosphere. Time was spent explaining to the community elders, the family members, and the individual with a disability the purpose of the visit. This was done to increase the comfort level among all involved. Each interview lasted approximately one to two hours and was held in homes or on the plains. Interviews were conducted in either KiMaa or Kiswahili depending on the language preference of the participant. In most cases this was a very challenging enterprise as a question would be asked in English, then translated to Kiswahili and then finally into KiMaa. Responses were handled in a reverse order. Interviews were sensitive to cultural practices such as women not being allowed to stand or speak in front of men, wearing modest clothing and waiting for formal introductions. Content analysis of the data consisted of coding for themes from each interview, organizing and summarizing experiences by theme, and then locating pertinent quotes. During the data collection and analysis the researcher synthesized and reflected upon the interview responses. Findings Among the Maasai there was a strong belief that a disability is caused by a negative supernatural experience. The lack of accurate information on the causes of disabilities puts the individual with a disability at a distinct disadvantage and makes it easy for others to justify discrimination. Myths Three explanations were consistently given for the cause of a disability; curses, witches, and GodÕs will. Curses were attributed to shameful or harmful behavior on the part of the mother, father, or grandparent of the individual with a disability. Examples that were given included, Òdid not give food when there was famine,Ó and Òdid not let children sleep safely inside the house.Ó A child with a disability brought shame upon a family because it made the entire village aware of their disgrace. A curse could then also bring bad luck to the family. A man told the story of a family with three boys, ÒTwo boys were born strong and one was small [referring to his disability]. The two strong sons died, the weak son took his brothersÕ blood and so a bad omen.Ó Disabilities that occurred at birth were usually blamed upon a curse. If the disability persisted, it was then blamed on a witch. As one man said, ÒItÕs two phases.Ó Often disabilities that occurred later in life were blamed on a witch. One man believed his paralysis was due to being bewitched. He explained his disability in the following way, ÒMy neighbor stole my cattle. I went to fight him to get my cattle back and when fighting to get them back my neighbor bewitched me. That is why I cannot move one side of my body.Ó He then explained how he went to many traditional healers (witch doctors) and Òthey all confirmed it was a witch that had caused my paralysis.Ó One grandmother said, ÒWe took her to witch doctor when saw she was disabled. Thought problem could be cured, got a medicine there [it did not work] and leave her alone now.Ó The third explanation for a disability was GodÕs will. It is speculated by the researcher that many individuals in the tribe believed this was the desired answer by outsiders. During the focus groups when one person responded with this answer, all others parroted the response. This was true even when they had previously stated that a curse or witch was the cause of the disability. Their Fate Only a few participants believed that the Maasai continued to kill individuals with a disability--instead most vigorously protested the possibility. They all acknowledged that it had happened in the past, but as one said, ÒThe last 15 years brought change.Ó Only one person said he believed people with disabilities were still killed but in a more secretive manner. A few said that killing them was a sin, but that it was okay to neglect them by not feeding them or abandoning them. This was evidenced by some of the children in the rehabilitation center. According to the Director of the Center for Rehabilitation, one boy who was blind was found alone in Ngorongoro crater. He had been left to die and was afraid to move due to the threat of wild animals. Another young girl was found in a deserted village with a small jug of water and some food. There were notably fewer individuals with a disability the farther the participants resided from the city of Arusha. Maasai near Arusha tended to farm while those living farther from Arusha migrated with their cattle. An agrarian lifestyle reduced the problems associated with caring for an individual with a disability. The difficulties of migrating with a person with a disability came up in every interview. One woman said, ÒThey canÕt walk, need a donkey which is not always safe.Ó Another said, ÒWe hide them in the house and leave them when we migrate.Ó It could be speculated that the further from civilization the more likely the Maasai were to resort to primitive practices of hiding or killing their community members with a disability. Interestingly, the words ÒhideÓ and ÒkillÓ are used interchangeably in KiMaa. While neglect, hiding, and killing may still happen in the Maasai tribe it was clear that many did not approve of the practice. Almost all realized it was not accepted by Tanzanian society. Perceptions and Involvement in Community Most individuals with a disability did not feel they were a part of their community. Lack of acceptance by their tribe was attributed to their inability to be a contributing member. As one woman said, ÒDisabled is a person who canÕt work.Ó If you cannot work, if you cannot migrate with your people, if you cannot be educated then you are a liability, not an asset to the community. When asked about support from family and community, the one constant response was that they received sole support from their mothers. As one boy said, ÒItÕs just me and my mom.Ó Most felt that members of their community ignored them or made fun of them. They were usually not able to keep up with their age-mates, something that is very important in the Maasai culture. A 16 or 17 year old boy said, ÒI want community to see me like a human being. I am always considered a young boy.Ó Another said, ÒYou are looked like as a burden, because no money, no school. IÕm not allowed to do any tribal activities.Ó One woman said she was not accepted at first in her community, but then, Òa priest told them it could be them and they stopped laughing at me.Ó The power of a respected and influential person made a difference in this situation. As is the custom, throughout the interview process women never spoke when men were present. One young woman began to share immediately after her father left the area. She had a slight disability, paralysis on one side of her upper body. She was married and had three children. She said, ÒI dig and fetch water with one hand and my children help me. I call on other women to help me do things, like renew my hut for the rainy season.Ó She said when she was younger she was teased by the other women: ÒI never listened to their words Ð always just left.Ó Another middle-aged man perceived himself to be valued by his community because he had graduated from primary school, which made him more educated than most of his peers. He was also able to walk with the aid of crutches and therefore was capable of some work. The severity of a disability and the degree to which the disability was considered a burden to the community seemed to influence the level of acceptance by the tribe. The perspective of the elders was often different from the perspective of the individual with a disability. In one village the elders said, ÒWe include him; we take him when we migrate.Ó The teenager with a disability then emotionally spoke: ÒI get no help and am not considered part of the tribe. They leave me when they migrate.Ó His father, concurred, saying, ÒHe faced many difficulties because can do no work to provide for his needs.Ó Involvement in the community and tribal rituals by people with disabilities was usually minimal. Some of the males with a disability were allowed to go through the circumcision ceremony. After the ceremony, boys traditionally go into the wilderness for a couple of months as a survival test. Modifications were made for those with a disability; they were allowed to stay close to home and be protected. This led to an interesting discussion on female circumcision in one village. The elders all said the practice had been abolished, but when young married men were asked if their wives were circumcised, they laughed and all proudly said, Òyes.Ó Females responded that they wanted to be circumcised because it signified adulthood and if they did not participate in the ceremony it would mean no husband, no children, and they would be forbidden to take part in tribal rituals. These were all things they valued and wanted in their lives. Only one person with a disability had received an education. Some did not want to go to school, saying, ÒTeachers were mean to me.Ó A chief commented, ÒHead teachers donÕt want them because they donÕt have time.Ó The distance to school was also usually cited as a reason that the individuals with a disability and others in the community were not educated. Most men in the community said they would not marry a woman with a disability; the only exception was Òif the disabled girl can give a baby.Ó One girl talked about not being ÒbeadedÓ when she was younger. Girls commonly receive a beaded bracelet from a man when they are about ten years old. This is regarded as a promise to protect and perhaps marry them. She believed her disability prevented her from being beaded. All participants believed it was not a problem for a woman to marry a man with a disability. Health Care None of the participants with a disability sought modern health care on a regular basis. Their proximity to the rehabilitation center and health services did not seem to make any difference in their decision to seek or not seek care. Of those who were taken to the rehabilitation center, they only went once, as one mother said, because they Òcould not be healedÉdidnÕt take him for more exercise because no one to help with other children.Ó It is possible that some parents desire a permanent placement outside the home for their child with a disability. There is no facility for long term shelter for individuals with a disability in the district. One chief became very angry when he realized the researchers would not take his daughter with severe multiple disabilities. In another village, the threat of being given away was seen in the actions of a young girl with a club foot. She became hysterical and tried to run away when she saw the research team approach, believing they had come to take her away. An abundance of burn victims were in the rehabilitation center, and often their burns had been neglected for a year before they came to the center. The charcoal burners used for cooking were seen as the main culprit. Protective devices have been designed to reduce the incidence of burns, but none were seen being used in any of the villages that were visited. When asked their greatest worry, participantsÕ first response was that the government would take away their lifestyle: ÒWe donÕt want government intruding on our lives.Ó But at the same time there was a consensus of wanting more assistance from the government. Most believed they received Òno help from the government.Ó In essence, they wanted more help from the government, but at the same time feared their involvement. Recommendations Whether it is death, sterilization, or limitations in jobs and education, individuals with a disability face prejudice and discrimination in Tanzania. It is particularly problematic for Maasai with a disability. There is an initial and immediate need for Outreach Programs that offer physical therapy and medical treatment for individuals with a disability in the Maasai Tribe. A combination of wariness toward modern medicine, distance from services, and other family duties make it unlikely that children with a disability will be taken to health services for initial treatment or rehabilitation. An Outreach Program, where trained professionals go to the villages, would be a good transition between receiving no care and seeking treatment. There is also a need for education on the following issues: prenatal care, disabilities, other health care issues, and the proper use of cooking facilities to reduce burns. The involvement of both men and women in the education programs would strengthen their effectiveness. The patriarchal nature of the Maasai Tribe makes it imperative that men be included if change is to take place. Involvement of women is self-evident, since they are involved in most of the day to day care of the individual with a disability and all health issues. In addition, there is a need for more rehabilitation facilities and extended living services for individuals with a disability. Currently, there is only one rehabilitation center in the district, with a capacity for 30 patients. Clinicians frequently find themselves serving 100 people and their patients find themselves sleeping in hallways or on the floor. In addition, there is a need for extended living services; currently none exist in the district. This is an important feature of a comprehensive program for individuals with a disability. Finally, vocational training centers that not only train, but also offer employment opportunities, need to be provided. This would give the individuals with a disability the ability to support themselves and become productive members of society. Such programs are rare in Tanzania and tend to have long waiting lists. Sheryl Feinstein, Ed.D., is a 2007-2008 Fulbright Scholar to Tumaini University, Iringa, Tanzania. She is an Associate Professor in the Education Department at Augustana College in Sioux Falls, SD, USA. Her main area of research is the adolescent and she has written multiple books and articles on the topic. The author can be contacted at Sheryl.feinstein@augie.edu OR sherylfeinstein@yahoo.com References Davis, K. (1995). Kill That Cripple. Mouth (Magazine). Free Hand Press, Washington, DC. Eide, A.H., & Loeb, M.E. (2005). Data and statistics on disabilities in developing countries. Disability Knowledge and Research. Retrieved from http://disabilitykar.net/research/thematic_stats.html Hershey, L. (2001). Tanzania: Research explores lives of disabled women & girls. Disability World 2001 Society for Disability Studies Conference in Winnipeg, Canada. 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