Home| Keynote Speeches| Workshop Papers| Other Documents
When reading Paul's paper, I first thought about the need to understand the social/cultural/economic setting of the Argentine families with visually multi-impaired children whose reality is rather similar to that of other Latin American countries.
We usually deal with low and middle class families who find it very difficult to find a job they have been trained for; their income , then, hardly meets their basic needs. This situation has a direct effect on the amount and quality of education children may get. Most families have many children who are frequently born from different parents, unsteady couples and single mothers with no conjugal support.
Men are frequently characterized by "macho" attitudes and by abusive physical and psycological behaviour. Women play a major role since they not only take care of the house and child rearing and education but also must go out to work. Therefore, mothers are often forced to leave the younger children's care and education in the hands of elder siblings. This is why children start working at an early age as beggars, for example, and drop out of school.
Most families live in small,crowded houses located in urban and suburban areas, with marginal health care. With little medical control, children are generally undernourished and frequently suffer from intellectual and physical-psychological disorders and diseases that result from lack of basic immunizations.
Regardless of their social class, these children are always helped to live with their families in liu of being placed in an institution.
This reality makes it very difficult for these families to handle the education of their children in a positive manner. This situa-tion gets even worse when visually impaired children or children with multiple disabilities are involved. Therefore, the question is:
Which role should educators, families, schools and authorities play?
In order to answer the questions necessary to provide an education that meets the needs of both children and relatives, I would like to share Veronica's life with you all.
Veronica is a 5 year old girl with visual impairment and cerebral palsy. She is quiet and has a good visual and sign communication. Although Veronica uses sign language, she manages to utter some isolated words in cases of great need. They are understood by people who are close to her.She enjoys body contact.
The cause of her disability is unknown. She grew up normally until two and a half years of age, when a regression that lasted six months left her paralyzed, without speech and sphincter control. At present, she is thin with a history of malnutrition and is either in her mom's arms or lying down.
Like many other Latin American children, Veronica lives with her mother and foster father, being cared for by her mother. The fam-ily's social, cultural and economic setting is low. They live in a humble, one-room house located in an rural area away from health and education centres. They live on donations from neighbours,from the municipality,and from the church, on ocasional household work secured by Veronica's mother and on the sale of regional herbs packed at home.
Veronica is now being assisted twice a week at a near children's hospital by a speech therapist, a psycho-motor therapist and a psychologist.
There is a Centre for Disabled People nearby, however, her mother, doesn't take Veronica there because she is in disagreement with the kind of assistance given that prevents her from taking part in the activities developed.
Undoubtedly, the best alternatives intended to improve their standard of living are not being offered to Veronica and her fam-ily.
Therefore, and according to Paul's paper, we should think about the following question: How could we foster partnerships in order to give a more family supportive approach?
The first concept I would like to highlight is related to Paul's First Law of Partnership: "We should value the contribution of every one. And we should not make the mistake of thinking that our part in the partnership is any more important than anyone else's". If Veronica doesn't attend school because it doesn't meet the family's expectations, and is only assisted in some areas such as psychology, psychomotor fuction, it can be easily inferred that she is not being approached on a basis that really meets her needs.
The individual work, therefore, goes beyond the lack of profession- al training to work on a pooling basis as Paul says, because it is closely connected with every person's life experiences and philosophical concept of individualism and power conveyed by authoritative systems that have prevailed for several generations in many Latin American countries.
Then, the question is: Which preparation process should be formulated to generate a philosophical approach that may develop a cooperative attitude?
Paul's Second Law of Partnerships says: "Be clear who is reponsible for what".
In this region, there are many children like Veronica who are assist ed in Medical Centres by several professionals and go to school where they are handled by different teachers getting contradictory random messages. The family, in turn, goes from one professional to the other, feeling as if it were carrying a "great knapsack". I would dare say, then, that apart from setting up roles it turns out to be vital for colleges to qualify Health Professionals and Spe-cial Educators in the competences necessary to meet the needs of the disabled population and its family.
The above statement could be asserted by taking another piece of Paul's study: "Yes, they should have some basic skills in teaching a visually impaired child. But more importantly they need the skills to advise someone; the skills to help a teacher or a parent feel good about their own action; the skills to help a teacher or a parent work out solutions for themselves rather than rely forever upon the expert; the skills to train others; the skills to form partnerships".
Going back to the case of Veronica, she attends no school because it doesn't meet the needs of her family. As educators we have been prepared to serve a different kind of population. Therefore, educators won't be able to fulfill the skills mentioned by Paul unless they acquire the knowledge to work with multiply-disabled children on a daily basis.
On the other hand, as medical doctors or related professionals make the first, and more often than not the only lifetime contact with the child and his family, they should give the first relevant piece of information, orientation and advise. With reference to another piece of Paul's study. "Let us be hon- est. There is nothing magical about teaching our children. Yes, training helps, but a good teacher or a good parent will manage fine if they have the confidence".
I would like to add that sometimes this lack of confidence or as-surance is due to a deficient preparation which leads us to be afraid of hurting the child if we assume the role of educators. I think, however, that besides a professional training educators should be really interested in serving children and their families.
I'm pleased to highlight from Paul's study the importance of getting the child, the family, the professionals and other members of the community involved in the decision-making process concerning the child's future and education programme.
In general, and in the case of Veronica in particular, only the current physical needs are met, overlooking other potentials to be developed in order to lead a better life both at present and in the future.
More often than not, our communities find it very difficult to "dream" of and plan for the future, since for quite a long time dreaming resulted in great disappointments brought about by econom- ic policies. These policies have paid little attention to educa- tion. This situation gets even worse when visually impaired children or children with multiple disabilities are involved.
It seems that our communities still have to acknowledge and assert the rights of the children and their families. It is highly necessary then, to get together and work on a cooperative basis to attain this common goal. Perhaps this is the best way Veronica's dream may come true.