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Methodology The field research for this report was conducted between March and April 2011 across eight districts in three regions of Nepal (central, mid-western and far-western). The three regions were selected because they represent different geographic areas (plains, hilly and mountain areas); and there are active organizations working with people with disabilities who could provide guidance, facilitate interviews and collaborate with Human Rights Watch on advocacy. This report is based on 97 interviews both in Nepal and by phone preceding and following field research. In this report, the word “child” refers to anyone under the age of 18.10 Human Rights Watch also interviewed young people, between the ages of 18 and 30 years, about events that occurred when they were children or because they are still going to school. Fifty-two key informants, including fifteen children and four young people with disabilities, twenty-three parents or other family members, and ten teachers or principals were interviewed. Nine children or young people were present in interviews with parents or family members. All interviews were facilitated by local disabled persons’ organizations, nongovernmental organizations (NGOs) or disability advocates. Six of the children or young people interviewed were girls. Whenever possible, Human Rights Watch spoke directly with the children, but in cases where children were too young, had disabilities that impeded their ability to participate comfortably in an interview or faced possible trauma, we interviewed their parents. The range of disabilities of the children included physical, sensory (blind, deaf and hard of hearing), developmental, learning, intellectual and mental disabilities. Some children had multiple disabilities. While Human Rights Watch interviewed children with a range of disabilities, this research focuses on children with intellectual and developmental disabilities because of the extra barriers they face in accessing schools and the limited educational opportunities available to them. Children (and adults) with intellectual disabilities are marginalized even within the disability community.
Human Rights Watch visited 12 schools: four general schools with resource classes for deaf, blind or children with intellectual disabilities; three special schools for children with disabilities; and five day care centers for children with intellectual, developmental or multiple disabilities. In addition, Human Rights Watch interviewed eight relevant local and national government officials, including in District Education Offices, the Ministry of Women, Children and Social Welfare, the Ministry of Education and the Ministry of Health, and two members of parliament. Thirty-five representatives of disabled peoples’ organizations (DPOs), local NGO service providers, international NGOs and UN agencies were also interviewed. Interviews with NGO representatives and government officials were conducted in English or sign language with interpretation. Interviews with children and young people with disabilities and their families were carried out in English, Nepali, Newari and sign language, with consecutive interpretation as needed. For each child interviewed, we explained our work in age-appropriate terms. Before each interview, we informed potential participants of the purpose of the research and asked whether they wanted to participate. We informed participants that they could discontinue the interview at any time or decline to answer any specific questions without consequence. Human Rights Watch took great care to interview children and their families in a friendly and sensitive manner, and ensured that the interview took place in a location where the interviewee’s privacy was protected. Persons in the report are identified by their real names, except at the request of two parents. In these cases, their names have been replaced with pseudonyms. HRW also consulted international disability rights experts at various stages of the research and writing. We also reviewed a number of official documents from the Nepali government, particularly the Ministry of Education, and relevant reports from multilateral and bilateral donors, UN agencies and NGOs.
Districts where Human Rights Watch conducted field research are highlighted. © Human Rights Watch 2011 Terms Autism: Present from early childhood, autism is a developmental condition characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts. The cause of autism in children is unknown, but researchers generally believe that it stems from a problem in the central nervous system, not in the way parents have treated them or in others aspects of the environment.11 Cerebral palsy: Cerebral palsy is an impairment of muscular function and weakness of the limbs, caused by lack of oxygen to the brain immediately after birth, brain injury during birth, or a viral infection. Often accompanied by poor motor skills, it sometimes involves speech and learning difficulties.12 Developmental disability: “Developmental disability” is an umbrella term that refers to any disability starting before the age of 22 and continuing indefinitely (i.e. that will likely be life-long).13 It limits one or more major life activities such as self-care, language, learning, mobility, self-direction, independent living, or economic self-sufficiency.14 While this includes intellectual disabilities such as Down syndrome, it also includes conditions that do not necessarily have a cognitive impairment component, such as cerebral palsy, autism, epilepsy and other seizure disorders. Some developmental disabilities are purely physical, such as sensory impairments or congenital physical disabilities. It may also be the result of multiple disabilities. While autism is often conflated with learning disabilities, it is actually a developmental disability. 1  1 Merriam-Webster's Medical Dictionary, 2007, http://dictionary.reference.com/browse/autism (accessed June 13, 2011).
The American Heritage New Dictionary of Cultural Literacy, Third Edition, 2005, http://dictionary.reference.com/browse/autism (accessed June 13, 2011). 12 Collins English Dictionary - Complete & Unabridged 10th Edition, 2009, http://dictionary.reference.com/browse/Cerebral+Palsy (accessed June 13, 2011). The American Heritage® Stedman's Medical Diction, 2002, http://dictionary.reference.com/browse/Cerebral+Palsy (accessed June 13, 2011). 13 American Association on Intellectual and Developmental Disabiliies, “FAQ on Intellectual Disability,” 2011, http://www.aamr.org/content_104.cfm (accessed June 17, 2011). Merck Source: Online Medical Library, “Mental Retardation/Intellectual Disability,” October 2006, http://www.mercksource.com/pp/us/cns/cns_merckmanual_frameset.jspzQzpgzEzhttpzCzzSzzSzwwwzPzmerckzPzcomzSz mmhezSzsec23zSzch285zSzch285azPzhtml (accessed June 17, 2011). 14 Centers for Disease Control and Prevention, “Developmental Disabilities,” October 29, 2004, http://www.cdc.gov/ncbddd/dd/ (accessed June 17, 2011). Disabled Peoples’ Organizations (DPOs): Disabled People´s Organizations are formal groups of people who are living with disabilities, and who work to promote self-representation, participation, equality and integration of all people with disabilities.15 Intellectual disability: An “intellectual disability” (such as Down Syndrome) is a disability which is characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. “Intellectual disability” forms a subset within the larger universe of “developmental disability,” but the boundaries are often blurred as many individuals fall into both categories to differing degrees and for different reasons. Learning disability: Learning disabilities refer to difficulties in learning specific skills, such as reading, language, or math. They affect people's ability to either interpret what they see and hear or to link information. Children with learning disabilities may also have difficulties with paying attention and getting along with their peers. Learning disabilities are not related to intelligence or educational opportunity. Psychosocial disability: The term “psychosocial disability” is the preferred term to describe persons with mental health problems such as depression, bipolar disorder and schizophrenia. “Psychosocial disability” relates to the interaction between psychological differences and social/cultural limits for behavior as well as the stigma that society attaches to persons with mental impairments.16 1  5 Action on Disability and Development International, "Frequently Asked Questions: What are DPOs?," 2011, http://www.add.org.uk/faqs.asp (accessed June 13, 2011).
16 World Network of Users and Survivors of Psychiatry, "Manual on Implementation of the Convention on the Rights of Persons with Disabilities," http://www.chrusp.org/home/resources (accessed August 4, 2011), p. 9. I. Background In this society, children with disabilities can’t have a dignified life even if the parents want it. Parents are forced to hide them. - Mukunda Dahal, disability advocate and father of a 13-year-old girl with autism, Kathmandu, March 2011 Disability in the Nepalese Context There is limited data on people with disabilities in Nepal, including how many adults and children are living with disabilities, their specific housing, education, and healthcare needs, and what factors promote or hinder their equal membership in Nepali society. The available statistics are wide-ranging, from 0.45 percent (in the 2001 National Census)17 to 1.63 percent (based on a 2001 Situation Analysis on Disability carried out by the Nepal National Planning Commission and UNICEF)18 to more than 25 percent prevalence of disability in Nepal (in a household survey conducted by the Social Science Research Foundation).19 According to the World Health Organization (WHO), more than 15 percent of the world's population is living with a significant physical or mental disability.20 Using the government’s conservative estimate of 1.63 percent prevalence, there would be, at the very least, 207,000 children with disabilities in Nepal.21 However, considering the 1  7 His Majesty's Government of Nepal, National Planning Commission Secretariat, Central Bureau of Statistics, in
collaboration with UNFPA Nepal, "Population Census 2001: National Report," June 2002. The Central Bureau of Statistics will release data on the current census in late 2011, which may include statistics on the number of people with disabilities in Nepal. Om Astha Rai, "Census 2011 to be the most accurate, comprehensive," February 6, 2010, Republica News, http://archives.myrepublica.com/portal/index.php?action=news_details&news_id=14823 (accessed August 4, 2011). Kyle Knight, "What We Can Learn from Nepal's Inclusion of 'Third Gender' on Its 2011 Census," July 18, 2011, The New Republic, http://www.tnr.com/article/world/92076/nepal-census-third-gender-lgbt-sunil-pant (accessed August 4, 2011).
extreme level of poverty, poor access to health care (particularly in the hilly and mountain regions), the high incidence of accidents in the mountainous areas and the protracted conflict in Nepal,22 the prevalence of disability is likely higher than the government figures indicate.23 Furthermore, because of shame on the family and the belief that disability is the result of past sins, children with severe or intellectual disabilities as well as girls with disabilities are often hidden in their homes away from the public and may not be included in any data on children with disabilities.24 According to the Nepal Demographic and Health Survey, birth registration also does not capture information on children with disabilities.25 There is no internationally accepted definition of disability. The 2006 Convention on the Rights of Persons with Disabilities, a landmark treaty ratified by 103 countries including Nepal, describes people with disabilities as including those “who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”26 The government of Nepal expanded its national definition of disability in a 2006 policy.27 This definition recognizes seven types of disability: physical disability, visual disability 2 2 From 1996 to 2006, Maoist rebels, officially named the Communist Party of Nepal, waged a campaign against the Nepalese monarchy and government forces, resulting in more than 12,000 casualties and 100,000 people displaced. A Comprehensive Peace Accord was agreed in November 2006 and was monitored by the United Nations Mission in Nepal until January 2011. BBC News, "Nepal Profile," February 18, 2011, http://www.bbc.co.uk/news/world-south-asia-12511455 (accessed July 28, 2011). UN Department of Public Information, 6466th Meeting of the Security Council, January 14, 2011, SC/10152, http://www.un.org/News/Press/docs/2011/sc10152.doc.htm (accessed July 28, 2011). While no precise government data is available on the number of children in Nepal who live with disabilities as a result of the conflict,
media outlets and NGOs have reported that numerous children were injured during the war. National Coalition for Children as Zone of Peace and Child Protection, “Conflict-Affected Children’s Access to Humanitarian Services in Nepal,” December 2010, http://www.czop.org/reports/publication/CZOPP%20Book-Bardiya%20Research.pdf (accessed July 26, 2011), p. 7. 23 Human Rights Watch interview with Shudarson Subedi, Advocate, Disabled Human Rights Centre, Kathmandu, March 29, 2011. 24 Human Rights Watch interview with M.M. Wara, Inclusion Project Coordinator, Handicap International, Kathmandu, March 29, 2011. 25 Ministry of Health and Population, Government of Nepal, “Nepal Demographic and Health Survey: Table 2.15,” 2006, p. 33. Only 32.9 percent of children under five years of age have birth certificates, and only 35 percent are registered. Human Rights Watch email correspondence with Brigitte Sonnois, Chief Child Protection, UNICEF Nepal, June 5, 2011. 26 CRPD, art. 1. 27 Government of Nepal, “Definition and Classification of Disability in Nepal,” 2006, translated by the Resource Center for Rehabilitation and Development, http://rcrdnepa.files.wordpress.com/2008/05/definition-and-classification-of-disability-innepal.pdf (accessed June 13, 2011). The Disabled Welfare and Protection Act of Nepal 2039 (1982) defines “disabled person” as “a Nepalese citizen who is physically or mentally unable or handicapped to do normal daily life works. This expression also includes a blind, one-eyed, deaf, dumb, dull, crippled, limb, lame, handicapped with one leg broken, handicapped with one hand broken, or a feeble-minded person.” The Act also defines “helpless disabled persons” as “a disabled person who does not have any assets or any person to attend and serve him and who cannot earn his living by doing a job himself.” Protection and Welfare of the Disabled Persons Act, 2039 (1982), s. 1, http://rcrdnepa.files.wordpress.com/2008/05/disabiled-welfare-and-protectionact_1982.pdf (accessed March 10, 2011); See also Country Profile on Disability: Kingdom Of Nepal. Japan International Cooperation Agency Planning and Evaluation Department (March 2002). At: http://gwweb.jica.go.jp/km/FSubject0601.nsf/3b8a2d403517ae4549256f2d002e1dcc/54a619bb76fd92034925727d0008246b/ $FILE/Nepal%282002%29%201.pdf. The updated definition in the government’s 2006 policy is: “Disability is the condition of (blind or low-vision), hearing disability (deaf or hard of hearing), deaf-blindness, voice and speech disability, intellectual disability and multiple disabilities. In Nepal, persons with intellectual disabilities are referred to as people with “mental retardation.”28 The definition also includes little people and disabilities such as muscular dystrophy, autism and stuttering.29 In its National Policy and Plan of Action adopted in 2006, the Ministry of Women, Children and Social Welfare acknowledged, however, that the current definition does not reflect international standards and pledged to revise it in a “timely” manner.30 According to the 2001 disability analysis carried out by the National Planning Commission, multiple disabilities were the most common type of disability in Nepal, accounting for 31 percent of persons with disabilities. Among all people with disabilities, 34.3 percent had a physical disability,31 19.4 percent reportedly had a speaking disability,32 19.1 percent with a hearing impairment, 11.1 percent have epilepsy, 5.9 percent had an intellectual disability, 5.6 percent had a visual impairment and 4.6 percent had a psychosocial disability.33 d  ifficulty in carrying out daily activities normally and in taking part in social life due to problems in parts of the body and the physical system as well as obstacles created by physical, social, cultural environment and by communication.” The definition is based on the WHO framework for measuring health and disability at both individual and population levels, called the International Classification of Functioning, Disability and Health (ICF). The ICF was officially endorsed by all 191 WHO Member States in the Fifty-fourth World Health Assembly in May 2001 (resolution WHA 54.21). World Health Organization, “International Classification of Functioning, Disability and Health,” May 22, 2001, http://www.who.int/classifications/icf/en/ (accessed June 3, 2011).
28 Disability advocates prefer the term “intellectual disability” as opposed to “mental retardation” because it reflects a rights-based approach and aligns with current professional practices to provide support tailored to individuals to enhance their functioning. American Association on Intellectual and Developmental Disabilities, “FAQ on Intellectual Disability,” 2011, http://www.aaidd.org/content_104.cfm (accessed June 1, 2011). 29 Disabled Peoples Organizations – Denmark, “Country Strategy of the Danish Council of Organization of Disabled People: October 2007 – September 2012,” September 12, 2007, http://www.disability.dk/partner-countries/nepal/country-strategy (accessed May 13, 2011). See also Government of Nepal, “Definition and Classification of Disability in Nepal,” 2006, http://rcrdnepa.files.wordpress.com/2010/09/definition-and-classification-of-disability-in-nepal_english.pdf (accessed May 12, 2011). 30 Ministry of Women, Children and Social Welfare, “National Policy and Plan of Action on Disability,” 2006, http://rcrdnepa.files.wordpress.com/2008/05/national-policy-and-plan-of-action2006-eng.pdf (accessed June 17, 2011), section 2.2.4. The Act uses a number of derogatory word such as kano, andho, bahiro, lato, lathebro, lulo, kunjo, langado, khorando, and dundo. These derogatory words should be removed while harmonizing the definition. 31 National Planning Commision/UNICEF/New Era, “A situation analysis of disability in Nepal,” 2001, http://rcrdnepa.files.wordpress.com/2008/05/a-situation-analysis-of-disability-in-nepal-2001.pdf (accessed May 27, 2011) The report indicates that 19.5 percent have mobility disabilities and 14.8 percent have manipulation disability. Mobility disability is defined as “A person who was unable to perform the daily activities of life due to a physical deficiency, defect or deformity in the lower limbs was said to have mobility or walking disability. Manipulation disability is defined as “A person who was unable to perform the daily activities of life due to a physical deficiency, defect or deformity in the upper limbs was said to have working or manipulation disability.” 32 According to this analysis, “[a] person who could not speak at all or a person who could not be understood outside the family,” was said to have speaking disability. National Planning Commission/UNICEF/New Era, “A situation analysis of disability in Nepal,” 2001, http://rcrdnepa.files.wordpress.com/2008/05/a-situation-analysis-of-disability-in-nepal2001.pdf (accessed May 27, 2011). 33 National Planning Commision/UNICEF/New Era, “A situation analysis of disability in Nepal,” 2001, http://rcrdnepa.files.wordpress.com/2008/05/a-situation-analysis-of-disability-in-nepal-2001.pdf (accessed May 27, 2011), section 3. Diseases such as typhoid, smallpox, and meningitis were reported as the main causes of disability. Accidents were considered a major cause of physical disabilities.34 In Nepal and in many other countries, disability and poverty are inextricably linked.35 Poverty can lead to disability through malnourishment, the inaccessibility of health services, poor sanitation, or unsafe living and working conditions.36 In turn, having a disability can “entrap a person in poverty by limiting their access to education, employment, public services and even marriage.”37 Worldwide, as many as 50 percent of disabilities are directly linked to poverty. Nepal, with a population of about 29 million, is one of the poorest countries in the world with a per capita income of US$240 per year.38 According to the World Bank, the poor in Nepal have the lowest physical access to health care.39 The Education System in Nepal There are 32,130 schools across the 75 districts in Nepal.40 The school system consists of primary, lower secondary, secondary and higher secondary education. Under a new approach, “basic education” refers to primary (classes 1 to 5) and lower secondary school (classes 6 to 8). Secondary schools offer two more years of education (classes 9 and 10), while higher secondary schools are an additional two years beyond that. Childhood development or pre-primary classes are offered as preparation for grade one.41 Of the primary school aged population in Nepal, 93.7 percent are enrolled in school, totaling nearly five million children.42 Of all those enrolled in school at the primary level, 1.1 percent are students with disabilities, totaling 53,681 children.43 Table 1, below, shows the enrolment of children with disabilities at primary, lower secondary and basic levels in the school year 2009-10. |
