Around the world, there are between 93 to 150 million children with disabilities (UNICEF, 2013). An estimated 80% of people with disabilities live in low and middle-income countries (Barron & Ncube, 2010) where they are among the most marginalized people in the world – more likely to live in poverty and less likely to be in school (Filmer, 2008; Mitra, et al, 2013). Many are “invisible,” even to their neighbors, because they do not leave home, receive social services, attend school, or participate in community life.
These realities exist in stark contrast to the rights for individuals with disabilities that have been established in a series of international agreements over more than six decades, including the U.N.Convention on the Rights of Persons with Disabilities (CRPD; United Nations, 2006). The CRPD has been affirmed (either through ratification or accession) by 177 countries (United Nations, 2016) and has prompted many national governments to adopt policies which promote inclusive education. The importance of education for those with disabilities is also acknowledged in the Sustainable Development Goals (SDG) in which the fourth goal is to “ensure inclusive and equitable quality education and promote lifelong learning opportunities for all” (United Nations, 2015).
Despite these positive developments, persistent challenges continue to undermine the impact of well-intended initiatives (Beckman, et al, 2016). As part of an on-going research project in small, economically impoverished, communities in rural El Salvador, we have conducted house-to-house interviews with caregivers of children and youth with disabilities, and have conducted focus groups with local community leaders. Many of the families we spoke to earned as little as $ 500 year from subsistence farming and temporary, seasonal work in agriculture. Our work suggests that in low and middle-income countries, social and educational inclusion is often stymied when the needs of persons with disabilities intersect with the challenges posed by poverty and rurality, leading to further exclusion.
This intersection with poverty and rurality poses a broad array of challenges and further marginalizes those with disabilities. For example, none of the families we interviewed were part of, or even knew about, disability rights organizations in the country. Most families were unaware that they or their child had rights. Many families did not know what, if any, services were available for their children. Few of their sons or daughters attended school – some had never attended, others had stopped after initial attempts to attend. Many did not leave home and had little social contact, even with others in their villages. When parents shared stories of their son or daughter’s birth and ultimate diagnosis, we frequently heard descriptions of medical errors and a lack of medical care that likely contributed to the disability. For example, one mother described her experience at age 16 while giving birth to her son in a public hospital. In labor, she repeatedly told hospital staff that the baby was coming but she did not get medical attention until she cried out that her baby was no longer moving. Subsequently, her son was diagnosed with brain damage from oxygen deprivation and now, at age four, has severe quadriplegic cerebral palsy.
While some families were referred to public services in San Salvador, treatment was often intermittent or ended completely because families could not afford the cost of traveling into the city on crowded public buses that required multiple transfers. One mother – whose daughter at age twenty has never been to school – took her for therapy in San Salvador until her daughter grew too big to carry and she could not afford the cost of making these trips. The expense was not only for bus fare but also for the loss of a day’s work – costs that jeopardized the well-being of the whole family.
For parents whose son or daughter had disabilities that affected their mobility, issues of accessibility extended far beyond the accessibility of school. In such cases, simply getting their child out of the house was difficult, requiring that a caregiver carry their son or daughter across fields, on narrow trails and on rocky, rutted roads. If they had to go to a nearby town, they then had to lift their child aboard a crowded, inaccessible bus or stand in the back of a flatbed truck. Such challenges were frequently so prohibitive that they stopped pursuing needed educational, health and social services – particularly as their son or daughter grew larger and heavier.
In the event that students with disabilities made it to a local public school, teachers lacked sufficient training and resources to address their educational needs effectively. For example, when one mother tried to enroll her bright, curious six year old in the nearby public school, she was told that although he had the right to attend school, no one at the school could teach him because he was deaf and no one knew sign language. The closest school that served students who were deaf was in a town about two hours away by bus. Although he could learn sign language there, he was too young to go alone, the family could not afford the bus fare, and if his mother went with him, she would have to wait all day to return home with him, leaving no one to care for his brother.
Our conclusion is that, in addition to systemic policies that consider such challenges, community-based programs are necessary to include children and youth marginalized by the combined influence of poverty, disability and rurality. In this spirit, International Partners is now piloting a program, “Comunidades Inclusivas,” in five economically impoverished, rural villages with populations between 200 -450 members (35 – 100 families).
The “Comunidades Inclusivas”project includes four integrated components:
Campaña de Sensibilización. Each village has created a local public awareness campaign for their community. The goals are to emphasize the capacities of those with disabilities, promote social acceptance, and make residents aware that persons with disabilities have rights. Villagers have developed their own videos, conducted a logo/t-shirt contest, and created local visual displays (e.g. painted murals, bulletin boards) focused on communicating inclusive themes to their neighbors.
“Círculos de Amigos.” Each village has formed circles of friends and neighbors to support individuals with disabilities and their families. Members talk with the family to identify specific needs, and provide practical assistance and social contact. For example, “círculos” have joined together to build ramps at the community center/library, learned sign language to communicate with children in the community who are deaf, accompanied students with special needs to school, facilitated participation in community activities, and made home visits to those who cannot leave their houses. As neighbors become more aware of family priorities and needs, they increasingly make proposals for resources and activities to support the health and development of the individual with a disability. They also create an accepting environment that increases the ability of those with disabilities to participate in the educational and social life of the community.
Visitas Especiales. We have arranged for specialist visits from professionals in areas such as physical therapy, visual impairment, hearing impairment, speech therapy, adaptive physical education, and special education. These specialists travel to communities for individual consultations, make home visits, and conduct individual assessments. Going to communities spares families the difficulties of getting their son or daughter to services. It also permits members of the Círculos de Amigos to participate so that they can support families to implement recommendations. In addition, when the cost of going to school or obtaining access to health and therapeutic services is prohibitive, International Partners has solicited donors to provide “scholarships” which allow neighbors with disabilities to access needed services.
Materias y Actividades de Capacitación. Finally, we have developed training materials and activities focused on key evidence-based practices including: Universal Design for Learning, Positive Behavior Support, and Strategies for Alternative Communication. International Partners is currently piloting these modules in partner communities to be available on-line in 2019. In addition local disability rights organizations have provided training to families and Círculos de Amigos on such topics as the rights of persons with disabilities as well as how to evacuate persons with disabilities when there are emergencies and natural disasters.
The realities of life in remote, rural communities where people and governments have few resources make it difficult to provide educational opportunities and adequate services for individuals with disabilities. Future policies should be accompanied by funding initiatives that systematically address local challenges by promoting and supporting community-based initiatives; and provide training for local actors in communities as well as in public schools. As international initiatives continue to evolve, policies and practices must consider the day-to-day realities confronted by those who live at the intersection of poverty, rurality and disability.
About the authors:
Paula Beckman is a Full Professor in the Department of Counseling, Human Development and Special Education at the University of Maryland. She has been conducting research and teaching courses related to early childhood education, inclusive education and family support for more than thirty years. She also serves on the Board of Directors and as the Education Advisor for International Partners for more than fifteen years where she has worked to develop educational projects for children and youth in economically impoverished communities. She holds a Ph.D. in Special Education from the University of North Carolina Chapel Hill. For further information, contact email@example.com.
Don Montagna is the President of the Board of Directors of International Partners where he has worked with local leaders in Central America on issues related to community development and education for 19 years. Prior to this he served as the Senior Leader of the Washington Ethical Society where he directed multiple projects related to social justice.
Barron, L. & Ncube , J. (2010). Poverty and Disability. London, UK: Leonard Cheshire International.
Beckman,P.J., Abera, N., Sabella,T., Podzimek, K. & Joseph, L., (2016) From rights to realities: Confronting the challenge of educating persons with disabilities in developing countries. Global Education Review, 3 (3), 4-27. http://ger.mercy.edu/index.php/ger/article/view/218/205
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UNICEF (2013). Children and Young People with Disabilities Fact Sheet. https://www.unicef.org/disabilities/files/Factsheet_A5__Web_NEW.pdf (retrieved, April 20, 2018)
United Nations (2016). Convention on the Rights of Persons with Disabilities. Retrieved from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html (retrieved, April 20, 2018)
United Nations (2015). Sustainable Development Goals. Retrieved from:
http://www.un.org/sustainabledevelopment/sustainable-development-goals/ (Retreived April 20, 2018)
Note: This research was supported by Fondation Internationale de la Recherche Appliquée sur la Handicap