Perkins International Latin America and Caribbean Region supports the cultural identity of each population
María Antonia Vazquez and Graciela Ferioli
Among the many initiatives promoted by Perkins International1 in the Latin American region, one has been to reach out to the most remote areas of Latin America provide services to those individuals identified with multiple disabilities and deafblindness living within the many cultures living there. These regions are populated generally by indigenous people whose traditions, beliefs and living conditions complicate the challenge to provide services to these individuals.
Through the past ten years of our work in the region, Perkins International has become increasingly aware that indigenous peoples, whose families have members with disabilities, lack appropriate support necessary to address their educational rights. This reality is framed in a wider and much more complex situation that is associated with the individuals’ cultural identity and their situation of vulnerability.
The words of Carmen Guerrero2 and Ana Isabel Zapeta Velásquez (mother and representative of the Mayan population in Guatemala)3 shed light on stories that exhibit a reality which is becoming more apparent throughout the educational systems in Latin America.
Discussing the right to education in this context brings about everyday issues that are culturally sensitive, such as: traditional clothing that people wear, travelling to school, language, etc. In Guatemala, for example, the indigenous peoples are more concentrated in the interior of the country and are less visible in the capital city of the country.
Guatemala has worked hard through legislation and the work of its disability organizations to promote awareness of their history, culture, beliefs, society, etc. One example of this is the issue of clothing. Some families still argue the right for their child to wear traditional clothing while in school, while the school may require a special uniform. In other cases, there may be a generation gap within a family, such that the parents wish their children to wear traditional garments, while their children may choose modern clothing.
Consequently the educational organizations are learning to adapt to situations like this. Carmen Guerrero has reported that schools which demonstrate greater respect for the cultural diversity of the country see results with better participation from the indigenous families. However, the relationship with indigenous families is not always that perfect, often for reasons related to language and communication. Guatemala has 25 languages that are spoken among the different indigenous populations. To support the policies of inclusion, the Guatemala Ministry of Education4 uses four languages for their teacher training. This is not always the total solution, since there are many cases where the teachers hired do not know the specific language of the community in which they have to work. Successful communication with the child cannot be accomplished in these situations where the student (and parent) is illiterate, does not know the Spanish language and the teacher does not understand the indigenous language.
Further to language and communication conflicts, different beliefs about disabilities may affect service delivery. For example, one culture may look at a disabled child as a valuable gift, while another may view a disabled child as punishment. Differing beliefs are also observed regarding medical care. Some cultures put traditional remedies ahead of advanced professional medical care. Granted, some traditional methods may be effective; others possibly more life threatening. According to Carmen Guerrero, “Here, kids still die due to a diarrhea or dehydration and because people have no trust in doctors they rule out all other possibilities before even considering a visit to a professional physician or receiving medical assistance”. Even within a family, one parent may approve of medication for epilepsy; while the other believes the medicine will do more harm.
Having said all this, because of the potential conflicts inherent in developing inclusive educational proposals for these indigenous people, it is important that cultural diversity must be seriously respected. Educational plans need to be developed with greater flexibility to account for different cultural traditions. It is important that the multicultural diversity of the Latin American people be more clearly understood by the country’s educational system. Carmen Guerrero argues that by understanding and respecting the particular culture of the people that we are working with, only then will we succeed in satisfying the needs of all students evenly and according to their individual needs. Thus it is important to make adjustments specific for each different cultural community to ensure that the service is delivered appropriately.
Educational communities, indigenous peoples and disabilities
It is important to understand that the relationship between the educational facilities and disabled indigenous communities vary from country to country. “In a country like Bolivia, there is not common approach, just different stories and experiences, according to Alicia Rosaz5, Perkins International consultant. Despite the variety of languages which pose great limitations on the school staff’s ability to generate quality interactions, she affirms that the parents are amazing – they help each other and understand what they are asked to do”.
The vulnerable situations in which these people are living depicts two realities for this population with multiple disabilities and deafblindness. On one hand, there is the school community that provides care and nourishment for their child to allow the parents to work; on the other hand, there is the home and the strength of the family and how they deal with their child’s disability including the initiatives they take to help their children. Alicia Rosaz says, “… it is impressive how intuitive they are, how they organize their houses to improve access for their children; they put together parallel bars with trunks so that their child does not have to crawl – nobody taught them that; let’s not forget that their situations are very unfavorable. We encounter parents who do not know how to read or write, and there are cases of parents with intellectual disability who themselves have children with multiple disabilities.”
Once again the difficulty imposed by the lack of a common language becomes the main reason for the gap between the need for service and the kind of service that we can deliver. Alicia again states, “the main problem for these people is that they do not speak Spanish, they speak different languages, not only one; these languages are not written and sometimes there are no words to define particular situations. One time a director asked the parents what they would you call a man who had autism-type characteristics. As this meant nothing to them (the word did not exist in their language to define the situation of their child), the parents answered “an isolated man.”
People living in these vulnerable environments, receiving inadequate nutrition and exposed to many diseases, are subjected to higher rates of mortality and disabilities. In these situations there is a critical need to work on early intervention services to ensure a better development for these individuals.
Diversity, culture and curriculum
Throughout the ten years working with and learning about these diverse cultures, new best practices have started to emerge from Perkins International. These practices are supported through the philosophy favoring student diversity over intolerance, recognizing cultural and racial differences as strengths, not as weaknesses.
To develop this new approach which respects different individualities is both a challenge and an opportunity to learn about the diversity. This diversity must be considered when developing the curriculum plans.
To develop a new curriculum, educational plans must take into account the individual needs of each student with multiple disabilities and deafblindness as well as their cultural individuality.
During the last ten years of continuous activity with the indigenous population, Perkins International has been working to create educational options that reflect this diversity. It is a requirement now to show respect towards other cultures if we are to expect effective family, school and community inclusion. This means being flexible with the educational curriculum, sensitive to modes of delivery and the location for the educational programs.
Alison’s story (which follows) reflects how Perkins International Program promotes family, school and community inclusion and respecting the cultural identities of a specific Latin American and Caribbean people.
Alison is a charming six year old. She stands out in her community with her long black straight hair and her unique interpretation of music. She comes from an indigenous family living in one of the townships in the department of Chimaltenango, Guatemala6.
A month after she was born, her parents upon noticing that she did not open her eyes, took her to their health center. Upon hearing from the doctors that she was blind in both eyes, the family sought help. After learning about FUNDAL (Guatemalan Foundation for Children with Deafblindness and Multiple Disability), the family saw the opportunity for her to become independent and study like her two older brothers.
When she was three years old she joined FUNDAL at their Guatemala City headquarters. Initially only used to interacting with her family, Alison soon developed a level of social, living and communication skills which allowed her to achieve an appropriate level of personal independence.
Today she is six years old and is getting prepared to continue her studies in a regular school two hours from her home. While her parents are anxious, they are at the same time very happy with the opportunity that Allison has for developing further her educational skills and above all for enjoying living with other children of her age. The faith and encouragement from her parents has been very valuable and serve as an example for parents of the FUNDAL family.
There is no doubt that in Allison’s short life she has showed optimism at every moment; her culture is part of her personality and by just watching her, listening to her sing or watching her smile, you can see that she transmits a feeling of peace that makes this world a more humane one.
For more information, contact Graciela Ferioli (firstname.lastname@example.org) and María Antonia Vazquez (email@example.com)
1 Perkins International Latin America is a small corporate member of DbI. (www.perkins.org/international/latin-america)
2 Carmen Guerrero is the Pedagogical Director of Fundacion Guatemalteca Para Ninos con sordoceguera Alex-FUNDAL
(Guatemalan Foundation for Children with Deafblindness and Multiple Disability)www.fundal.org.gt
3 Ana Isabel Zapeta is in charge of Administration at FUNDAL.
5 Alicia Rosaz de Picasso Cazon is a mother, President of Instituto para Multi Impedidos Sensoriales (Fatima) and Past President of Organizacion Nacional de Padres de Personas con Sordoceguera y Discapacidad Multiple de la Republica Argentina.