Who is Disabled? Who is Not? Teachers Perceptions of Disability in Lesotho Christopher Johnstone, Ph.D. Candidate Educational Policy and Administration, University of Minnesota Abstract: This paper reports on educational research conducted in Lesotho, Southern Africa. Mixed methods of research were used to elicit and describe teachersÕ attitudes toward children they perceived as disabled. The study took place in a country where discussions on Ôthe continuumÕ of services, specialist diagnoses, and Western notions of assistive technology are largely irrelevant. Over-arching themes are compared to themes that have emerged from special education and Disability Studies literature over the past decade. Key Words: disability, Africa, special education Introduction The fields of Disability Studies and special education have often been at odds with one another. Disability Studies scholars, situated in cultural frameworks, often ask ÒwhatÓ and ÒwhyÓ questions related to the meanings of disability in society. By contrast, much of special education research is concerned with Òhow toÓ questions, attempting to understand how to best remediate perceived shortcomings possessed by students with disabilities. This tenuous relationship is cause for heated political debates and attempts by scholars of one persuasion to call to question the other. Brantlinger (1997) noted that the present paradigm in special education research (positivism) is a political mechanism to maintain medical models of disability. By embracing positivistic models of research without recognizing their political ramifications, Brantlinger asserts that researchers (either through willful or negligent acts) have discredited important social victories for people with disabilities, such as inclusion in public schools. Danforth (1997) also criticized modern special education models that focus too heavily on intervention and deficit models of disability. Organizational scientist and special education scholar Skrtic (1995) theorized that the very existence of special (separate) systems for special education implies that students with disabilities are not intended to be part of the regular education system, and that separate provisions, funding streams, and physical environments all act to ensure separate education. Although the outlook for Disability Studies informing professions like special education appears bleak, there is evidence of improving relations. In the 1990s, discussions about a ÒmergerÓ of special and regular education (Stainback & Stainback, 1990) and Òschooling without labelsÓ (Biklen, 1992) led many professional organizations to embrace the notion of inclusion. Inclusion in theory and practice has been supported by a better understanding of the lived experience of people with disabilities themselves (Ferguson, Ferguson & Taylor, 1992). Such an understanding is intended to promote better attitudes toward people with disabilities and empower disabled populations. Although empowerment of students with disabilities in K-12 education is still a relatively ignored issue in public schools (Ware, 2001; Ware, Solis, Echeverria, & Stoltz, 2004), research has demonstrated that attitudes toward students with disabilities matter, both for social and academic outcomes (Jordan & Stanovich, 2001). The attitudes of Òregular educationÓ teachers toward students with disabilities can be seen in the post-industrial world as a special education issue, a regular education issue, and a Disability Studies issue. These fields of study, however, are blurred in societies less apt (by choice or necessity) to be as specialized as countries with high levels of wealth, education, and privilege. The remainder of this paper will focus on attitudes of regular education teachers toward students with disabilities. The focus of the research will be on teachers in Lesotho, a small country in Southern Africa. Lesotho is considered one of the least economically developed countries in the world (World Bank, 2001) and will be used as an example of countries in the ÒMajority World,Ó or countries that are less economically stable, have less physical infrastructure, and are more subsistence-oriented than their neighbors in Europe, North America, and the Pacific Rim. Majority World countries are located all over the world, but are mainly found in South America, Africa, and Asia. Peters (1993) investigated the notion of special education in Majority World countries and found most countries did not have the Òluxury of specializationÓ that their Minority World counterparts did. For example, disability services were often delivered by family members and lay community members. The concept of domination by the professions (Foucault, 1965) is, according to Peters (1993), not even a choice many nations in the Majority World can make. This being said, special education in the Majority World is often less Òspecial.Ó Miles and Miles (1993), for example, found that Pakistani youths were often integrated into schools casually. Because of constraints in local schools, there were no serious efforts to actually include and make accommodations for students with disabilities. However, doors were open to any student that came to school, and teachers managed diversity as best they could. Most attitudes about disability, in circumstances such as those described above, are culturally- generated. Experiences of disability are often based on a combination of religious or other supernatural beliefs coupled with day-to-day experiences with people with disabilities (Ingstad, 1995). Situations arise, however, when small or large-scale efforts are made to change attitudes of people toward their disabled community members. In Southern Africa, attitudes toward people with disabilities have been questioned through large- scale Òawareness campaignsÓ (Ingstad, 2001), conscientization praxis (Peters & Chimedza, 2000), and through training professionals (like teachers) who will interact with students with disabilities (Mariga & Phachaka, 1993). Disability awareness and an understanding of what disability means were selected as major themes for teacher training in Lesotho. Rationale for such training was based on a feasibility study of inclusive education. Mariga and Phachaka found that upward of 15% of students in regular schools had some disability and that teachers lacked awareness. The authors concluded that students were being underserved because teachers could or did not recognize the diversity of learners in their classroom. LesothoÕs journey into inclusive education began in 1987 when an external consultant concluded the needs of LesothoÕs students with disabilities were best met inclusively (Csapo, 1987). The justification for this recommendation was that inclusion was both more cost-effective and more aligned with LesothoÕs culture of extended family and communal caretaking. A feasibility study performed by Mariga and Phachaka in 1993 determined that schools were at varying levels of ÒreadinessÓ for inclusion. Some schools appeared to have adequate resources and understanding while others had no idea what disability was and seemed unwilling to accept students with disabilities. The authors pointed out that enrollment of students with disabilities was actually a non- issue, as schools in Lesotho had always admitted students with disabilities. Because Lesotho had so little infrastructure in place for institutionally based rehabilitation and education, most people with disabilities lived in communities where they grew up. Mariga and Phachaka (1993) reported that lifestyles of community members with disabilities were not always idyllic, but that integration occurred by fiat because no other choices were available. Inclusive education began in full swing in 1993. During this year the Ministry of EducationÕs Special Education Unit began training at ten Òpilot schools.Ó Training was focused on technical skills related to teaching students with disabilities (informal evaluation, learning adaptations, and physical accessibility). A major focus, however, was on conscientizing teachers about disability itself. Trainers believed that Lesotho was rife with superstitions about disability (Ministry of Education, 1994) and that scientific explanations (read: medical model) were necessary to prepare teachers to better educate students with disabilities. Since 1993 the Ministry of Education has trained over eighty schools using the original curriculum. Peter Mittler, a special education professor in the United Kingdom, evaluated the training program in 1996. MittlerÕs recommendations were that Lesotho continue training more schools every year and that training programs were successful, especially in the area of attitudes toward students with disabilities. Lesotho has also currently added a pre- and in-service special education training program at its College of Education. An interesting feature of the Lesotho program is the lack of specialization. From the early days of policy passage, the Ministry of Education has neither budgeted for, nor funded, special education teachers. All teachers of students with disabilities are regular education teachers. Schools in Lesotho, then, have aspired to the aims of inclusion researchers in the Minority World that advocate for a blurring of special and regular education. Rather than a highly technical merger between two highly bureaucratic systems (Skrtic, 1995), however, LesothoÕs streamlined approach is need based, i.e., there is no money for anything other than a unitary system. The remainder of this paper will focus on field research of this system conducted in Lesotho from January 2004-April 2004. The overall research focused on special educational issues, but a subset of the research examined teachersÕ understandings of disability. An analysis of teachersÕ responses is provided followed by concluding comments on the implications of disability awareness training for teachers. Methods Data were collected and analyzed using qualitative research methods. Two main instruments were used: structured questions (found in a questionnaire) and semi-structured interviews. The advantage of using two different methods was an opportunity to reach a large number of teachers while discussing issues, in-depth, with a smaller sample. The first instrument used was a questionnaire. Twenty schools were visited to examine how special education was being implemented. In those twenty schools, 140 teachers participated in a short questionnaire. The first question on the questionnaire was, ÒTell me what it means when a student has a disability.Ó The questionnaire format was carefully considered because of potential bias created when researchers (author) and participants (teachers) are from different cultural and linguistic backgrounds. All teachers were fluent in English, but two precautions were taken to ensure participants understood questions. First, norm-referenced instruments were avoided. While pre- packaged attitude measurements are available that may have been adapted for this purpose, most normed instruments found in clearinghouses such as the Mental Measurements Yearbook are normed on cultural groups in the Minority World. Such norming may introduce cultural or linguistic bias (Wolcott, 1999). Rather, the questionnaire used was developed and pilot tested in Lesotho by the researcher himself. Statistical information was not tabulated for this paper, but the information gathered from the questionnaire was used for descriptive purposes. Therefore, the focus of pilot testing was to ensure teachers in Lesotho could understand what was being asked of them. Second, rather than distributing questionnaires by mail, the researcher visited schools himself. In total, twenty schools were visited. Ten of these schools were the original pilot schools described above. The other ten were recent additions to the list of schools ÒregisteredÓ and having received training in special education. Schools were located in nine out of LesothoÕs ten districts (Thaba Tseka District was omitted because there was no original pilot school in this district). Therefore, urban, rural, and remote mountainous areas were represented in the sample. Questionnaires were completed face-to-face to ensure the questions were understood. The researcher read all of the items to participants and clarified any misunderstandings. Print was large so all participants could easily read items and language was consistent with plain language guidelines. The entire questionnaire followed the elements of Universal Design of Assessments (Thompson, Johnstone & Thurlow, 2002). In the tradition of qualitative research, questionnaire responses were read, sorted, and gathered into over-riding themes (Bogdan & Biklen, 1992). Data that emerged from responses were categorized into codes. The second instrument used was semi-structured interviews. In these interviews teachers were asked to talk about their experiences with students with disabilities and special education. Specific questions were asked, but the format allowed for flexibility so teachers could comment freely and about a variety of topics (Bogdan & Biklen, 1992). Twenty teachers were interviewed using this format; each interview lasted 20-30 minutes. Teachers were interviewed during school breaks and after school. Interviews took place in English, although Sesotho phrases were used to illustrate points. The author of this paper was proficient enough in Sesotho to translate the phrases into English, but checked with teachers to ensure translations were correct. All participants listened to tape recordings of their interview and approved of its use in research before the results were analyzed. The researcher transcribed all tapes himself (this was done to ensure data was not lost due to insertion of Sesotho phrases or the accents of the teachers, which may be unfamiliar to Minority World transcriptionists). Data was then carefully read and coded with one and two word codes that described the content. These codes were then clumped into themes that described teachersÕ responses (Bogdan & Biklen, 1992). Unlike quantitative research, data was not plugged into a formula to arrive at an instant Òanswer.Ó Rather, data was reviewed slowly, themes were considered carefully, then double-checked again to ensure accuracy. Results Five major themes emerged from the data concerning teachersÕ understanding of disability. These themes were: 1. Disability as deficit; 2. Protectiveness of students with disabilities; 3. Inability to participate in lessons; 4. Empathy, and 5. Uniformity of response. Each of the major themes is presented with quotations that illustrate the theme itself. Sesotho words are translated with English words appearing in parentheses immediately after the Sesotho word. Disability as Deficit Similar to deficit models found in the field of education worldwide, teachers in Lesotho saw disability as a deficit. In virtually every questionnaire, the words Òcannot copeÓ were used in questionnaires, describing children with disabilities as those unable to perform under certain circumstances or unable to manage particular life challenges. Examples of teacher responses were: ÒIt (disability) means that the student, somehow, cannot cope. Maybe they cannot walk or cannot listen. Maybe they cannot hear properly.Ó ÒA disability means you cannot cope. It means you cannot do certain things that another can do.Ó Open-ended interviews yielded similar responses. Often teachers would use specific examples of students they had in class to illustrate what disability meant to them. Responses centered around four major types of impairment: hearing, vision, physical, and learning. Psychological disabilities and/or Òemotional disturbancesÓ common in the Minority World were not often given the status of disability by teachers. Likewise, HIV/AIDS was not considered a disability, despite recent Special Education Unit efforts to associate HIV/AIDS issues with disability: ÒThis one, she canÕt hear well. I will say things and sometimes she will just look at me. I have to repeat myself many times because of her disability.Ó ÒI had this one student with mental retardation. He could not do anything. All day he would sit and I would have to find some stones for him to count or some other material because he could not learn properly.Ó ÒSometimes the students canÕt see. You can see them looking like this (squinting) when they look at the page or at the board. We say they have a visual disability.Ó Teachers did not mention words like ÒcursedÓ or ÒpunishmentÓ often associated with disability in the Majority World (Ingstad & Whyte, 1995). Rather, teachers viewed disability as an impairment and in terms of the activities of daily life. Teachers associated the etiology of disability with natural or biological events, understanding that disability is often ÒcausedÓ by explainable events, such as malnutrition or accidents. This type of understanding appeared to normalize disability for teachers, and create a sympathetic response toward students with disabilities. Protectiveness of Students with Disabilities Teachers in Lesotho, despite their penchant for teaching with a disciplinary stick in hand, proclaim a deep love for their students and a protective nature for them. Students, especially in pre-school and younger grades are called linkuaneana (little lambs). Teachers in primary schools, who are 85% female (UNESCO, 2002) appear to take on the role of guardian of their students, and want to shield them from harm. This is especially true for students with disabilities: ÒWe love them (students with disabilities). They are a part of us. We must look after them and help them to be free and be part of everyone.Ó ÒI take them close and speak with them gently. When they are sad I hug them and say to them, ÔdonÕt cryÕ.Ó The protectiveness of teachers has led to a system with differential expectations. When students have disabilities they are automatically expected to do less than others. Promotion and grading decisions are made on an individual basis by teachers, and students with disabilities are often exempted from challenging tasks. Protectiveness, then, has mixed results for students with disabilities. In some ways, such students are able to participate in regular school and be part of their peer group without the burden of inappropriate materials. These same students, however, are often pitied and expected to be in child-like roles even as they grow older. What appears as a good- natured relaxation of challenging activities may actually act as a barrier as students with disabilities grow into adults with disabilities (Shapiro, 1994). Inability to Participate in Lessons As would be expected, disability seemed to impact teachers most according to their daily interactions with students. Many teachers defined disability in terms of school-based outcomes, many of which may be completely irrelevant in community life. Regardless, the focus on disability as a barrier to the curriculum demonstrates the converse - many teachers were unable or unwilling to modify their teaching to empower students with disabilities in their classes. The pattern of teacher talks, teacher writes on board, students copy information, students engage in an independent activity, and teacher checks students work was a common finding in observed lessons. Obvious implications for students with a variety of disabilities were present. Nonetheless, teachers saw disability as the inhibiting factor, not the structure of the lesson itself: ÒSometimes they cannot even write. I write things on the board for them to copy into their exercise books and they just sit there. They cannot hold a pencil properly and they cannot make proper letters because they have a disability.Ó ÒThis one does not talk. When I ask a question of the class she does not say anything. Sometimes I ask her again, but she says nothing. I think when I am teaching she is not understanding. She canÕt get it.Ó Miles (1999) theorized that inclusive education could be a catalyst to change all education, because the child-centered pedagogy associated with inclusive education has the potential to revolutionize teaching for all students. This revolution, however, has yet to occur in Lesotho. Promising new literacy programs have helped teachers to monitor student progress and prepare individualized and small-group activities based on student need, but lecturing and copying notes from the chalkboard was still the predominant mode of teaching found in twenty classroom observations. Students who cannot participate in this type of learning, then, will be considered ÒdisabledÓ by teachers, even when other factors, such as the curriculum and pedagogy of the classroom itself, may be more disabling than the studentÕs impairment. Empathy Teachers reported that, as a result of training, they had a better understanding of how they were disabled themselves. Similar to the findings presented above, Ministry of Education training appears to have normalized disability for many teachers. Most teachers even Òclaimed disabilityÓ (see Linton, 1998). From the use of glasses to mild hearing impairments to left-handedness, teachers claimed they too had disabilities and all of humanity at one time or other will encounter disability: ÒI too have a disability. I use this molamo (walking stick) to walk because my legs have fluid in them. It is a result of sugar diabetes. This is my disability. Ò ÒI cannot be angry at students for having a disability. I use glasses and sometimes have trouble reading their exercise books myself. Without my glasses I do not see very well. I also am using my left hand to write like you Ntate Chris (Mr. Chris Ð the researcher). We were told when we were younger that this was very bad but now I understand that it is normal and my students should be comfortable writing with either hand, or if they are in a wheelchair, or if they use glasses.Ó ÒI cannot hear out of this ear. Therefore, I have disability.Ó These empathic responses demonstrate that teachers abide by the principles, found in disability literature, that state nobody is immune from disability. Researchers like Davis (1998) note that ability and disability are not binary, but are more relative terms. Teachers in Lesotho appear to understand that disability is a lifelong and pervasive experience, one experienced by most everyone. These empathic responses did not appear to overhaul the dominant pedagogy in Lesotho, but affected how teachers approached students with disabilities. Interactions with students were often peppered with teachers noting their own ÒdisabilitiesÓ and challenges in life. Such interactions appeared to create a more welcoming environment for students with disabilities in the regular classroom. Uniformity of Response The final theme that arose from the data was that responses were homogeneous. The themes noted above were described in every school and by practically every teacher interviewed. Teachers appeared to take pride in their new consciousness about disability, deriding their community members for knowing less than they did: ÒThese Basotho (Basotho is the plural of Mosotho, or a person in the Sotho ethnic group) in the villages, they hide their children with disabilities. They donÕt know that they can learn.Ó Teachers heavily praised Ministry trainers for helping them to understand what disability is. In truth, there are words in Sesotho for disability, but these words are often viewed as derogatory or demeaning. The English word ÒdisabilityÓ appeared to have provided a sense of legitimacy to the teachers about the experiences of their students Such legitimizing seems to have appealed to teachers, as responses were similar across schools found in nine different districts and three different geographical areas (urban, rural, and remote). Implications of these findings are useful for both understanding what disability means across cultures and professions, and how disability-related training can be used to conscientize educators or other service providers. Implications The Lesotho model of teacher training, which focuses on attitudes toward students with disabilities, demonstrates how a professional field can incorporate a philosophy, or outlook, into training programs. Critiques of current special education practice assert that special education is mired in a paradigm of intervention, focused on fixing the problems of students with disabilities (Danforth, 1997). Fields like special education, according to Danforth (1997) and Brantlinger (1997) too infrequently consider the perspectives, rights, and experiences of people with disabilities. LesothoÕs Ministry of Education has not provided a model for changing this paradigm (disability- related training still is centered in a deficit/medical model), but originally provided opportunities for understanding issues like marginalization and exclusion. These themes all open a space for exploring the place of perspective in teacher training. Mariga and Phachaka (1993) set out to change (or develop) teachersÕ attitudes about disability and apparently have succeeded. Teachers in Lesotho (who have received special education training) have remarkably similar attitudes about disability. Although partially based on a much-criticized discrepancy model (Danforth, 1997), teachers do show empathic reactions and inclusive behaviors toward students with disabilities. Such attitudes guide day-to-day interactions with students with disabilities. These data demonstrate that, despite ongoing pedagogical weaknesses in Lesotho, attitudes towards students with disabilities can be shaped by training. This being said, possibilities open up for missing empowerment models to be included in teacher training. Peters and Lubeski (2002) noted one method of evaluating education is through a Disability Rights Model. One aspect of this model is conscientization at the local level. Such conscientization could easily include teacher training about attitudes toward students with disabilities. Furthermore, as countries in the Majority World develop inclusive and special education programs, LesothoÕs example demonstrates that attitudes can make a difference. A model of disability rights, inclusion, and perspective would include an interaction between disability awareness and pedagogical considerations. Lesotho has provided a first step for Disability Studies approaches, disability advocacy and special education to proactively co-exist in the Majority World. Christopher J. Johnstone is a Doctoral Candidate at the University of Minnesota in Educational Policy and Administration. He has worked on disability-related projects for over ten years in India, Africa, and on Native American reservations in the United States. His scholarly interests focus on inclusive schools and societies. He has published papers on systems perspectives of Community Based Rehabilitation, Universal Design of educational assessment, and accessible reading approaches. Correspondence should be addressed to: Christopher J. Johnstone, University of Minnesota, 350 Elliott Hall, Minneapolis, MN, USA 55455, phone: 612-624-1624; fax: 612-624- 0879; email: john4810@umn.edu. References Biklen, D. (1992). Schooling without labels. New York: Teachers College Press. Bogdan, R.C., & Biklen, S.K. (1992). 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