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EARLY INTERVENTION SESSION TALK by DR. RENATE WALTHES
XI ICEVI WORLD CONFERENCE, HOLAND, JULHO, 29/ 2002
First of all I would like to thank the organizers of this event for their invitation and for giving me the opportunity to participate in this debate. It is one of the efficient ways we have to share the doubts, worries, anxieties and also dreams of people in Latin America in regard to children with visual impairment and multiple-disabilities and their inclusion in the family, in schools and in the community.
I also want to express my gratitude to Dr. Renate, a brilliant colleague, for allowing me to share in her challenging train of thoughts. I don’t have, however, all the answers she may have expected me to provide.
Among so many questions, so many polemical theses and antitheses, that she, Dr. Renate, has presented so well for us in her lecture, I would like to highlight 3 points that seem fundamental to me. I invite all of you to reflect and try to shed some light on these 3 points.
In this setting, everything is very relative; and it is important to observe the contradictions that exist in the first world as well as in under-developed countries. Curiously in the past of the country I come from, Brazil, the main causes of visual impairment were cataracts from toxoplasmosis and congenital rubella, and blindness from trachoma and measles. Today these diseases are practically extinct thanks to excellent vaccination programs and basic prevention through family health care, provide even in remote areas in the country, including the Pantanal fluvial plains and the Amazon rain forest. However, in order to be here today, I had to be vaccinated against measles, because the first world lives today with this problem. Contradictory also is the fact that our universities are at the forefront of high-technology research, participating actively on the international network for studies on the human genome. We live, however, with growing incidence of multiple-impairments due to premature births and the technology that has been guaranteeing that babies survive in neonatal intensive care units. By the way, I have a 27-year-old son who has multiple impairments caused by a hospital virus infection, and to this day many other children continue dying because of this problem. In Latin America, another important factor leading to multiple impairments has been drugs. Perhaps this is also a reflection of globalization, of the economical crisis and of the failings of institutions. To overcome these problems we need not just abstract recommendations, but deep reflection in order to generate ideas and practical suggestions.
What are the concepts, theories, and visions of man and the world that serve as a basis for our Early Intervention programs?
Are they homogeneous concepts?
Are our intervention concepts based too much on the standards and position of those who see and thereby fail to meet the needs of the children who are born blind, visually impaired or multiple-disabled?
Then, the wonderful story that Dr. Renate told us about Ulrich, a blind boy with an unusual interest for photos and videos, illustrates the conceptual issue very well, shaking our convictions and (false) beliefs.
When reflecting about these matters, we cannot forget that psychology as well as pedagogy, sciences that help us to understand the development and learning process of human beings, are relatively recent fields. Built under the laws of innate causes, of biological determinism, of immaturity, of deficits and limitations. Historically, Early Intervention Programs were created under this positivist and mechanistic focus on homogeneity. Designed to modify and to re-educate the individual: to train eyes, movements and senses; to reframe the ways of perceiving, feeling, understanding and acting.
And this, even though theoreticians from early last century, like Piaget, had alerted us to the fact that limitations also exist in the sphere of social relationships and interactions. Wallon emphasized the importance of the construction of affective bonds in the process of identity formation, of creating significant experiences and of the role of play in the constitution of the subjectivity of the self.
In spite of this theoretical advance, it seems to me that in practice we have moved forward very little. Our programs and the field of special education still maintain the medical and therapeutic focus on children and assistance and guidance to their families. Special education seems to have advanced little in the way it focuses sociologic, ecologic and collective aspects.
Children with multiple impairments still don’t have the same opportunities and room for access to culture, to regular school curricula starting from pre-school so that they can partake of life, play, learn and build knowledge together with other children.
The priorities very often are still traced by professionals’ and institutions´ point of view rather than from the children´s needs, desires and expectations and those of their families.
I don’t intend at all to deny here the value of clinical or therapeutic evaluation and guidance. They are essential to the development of skills, abilities and competencies of children with multiple-impairments. I want to reflect on the need of truly trans-disciplinary work and of the conceptual transformation of our pedagogical culture, so that they cease to be obstacles and favor instead the inclusion of children with multiple-disabilities in the regular classroom.
I think that all of us, educators, parents and therapists, often mythify the magic power of the technical realm. This methodological fetish has perhaps clouded our vision, preventing us from seeing beyond the disability, the limitation, the impossibilities. We need to make a break from institutionalism, from technique, from homogeneous practices and anchor our thoughts on more heterogeneous symbols and practices. We need to value cultural differences; to accept different ways of being, doing, feeling, understanding; and to seek other ways of teaching, learning, thinking and imagining.
This idea seems somewhat romantic, but this is because it is still hard for us to break away from old paradigms and reflect in the direction of inclusion. How difficult it is to point the lens of our “telescope” toward the “other”, toward the child with a disability and his or her family; toward the human dimension of an individual with possibilities, abilities, skills and talents, without however denying his or her difficulties.
How difficult it is for us to distance ourselves from our truths and look at a particular child and family, with a unique personal history, that live in a context and a culture that are not mine. With personal, emotional and affective conditions that are not mine. With needs, interests, desires and dreams that are not mine.
Doubts and the contradictions still persist:
How to mediate the relationships and interactions in order to create possibilities, overcoming the homogenizing focus?
How to respond to the child’s specific needs, positioning ourselves appropriately to attend to the interests, expectations and desires of the family?
What is the role of Early Intervention Programs in the Paradigm of Full Inclusion? How should they be re-structured to support families and schools?
Now let us go the third and last point:
3. Parents seem to have acquired the views and concepts of specialists and therapists; in a way that they have really become co-therapists.
I believe that we are not able to say if this is right or wrong. It depends on the circumstances, on the social-cultural and economic context in which people live. I wonder if we have been asking parents why they have been transforming themselves into co-therapists or becoming their children’s teachers, as it happens in many parts of the world?
That was also my personal experience. In the city where I used to live in there weren’t any physical therapists to assist my son with neuro-motor impairments. I had to go to large centers to learn with therapists how to help him. I decided to go to the university to study special education in order to help him in school. It was very difficult for me to do this. I had to sacrifice many things, like time for my other children and my husband for instance, but I didn’t have any other option. On the other hand, being able to help my son calmed me considerably. I felt capable and relieved at being able to do something for him. I don’t know if I did right or wrong, but I know that my son will go to university like my other children. Of course I agree with Dr. Renate, when she says that parents should be parents. I would have preferred to be a more present mother for all my children. To have had, as the great blind Latin American poet José Luís Borges said, more time to go for a walk, to play, to have ice cream with them. I would like to have had much more time to take care of myself and also more time to share my love and joy of life with my husband. Well, we did what we could, and I believe that all parents, each one in his or her own way, want to give the best of themselves for their children.
I would like to conclude with the thoughts of a Brazilian psychologist and teacher who also has a physical disability. She says: “Disability never comes in white clouds, on the contrary: it threatens, disorganizes, and provokes action. It represents what is different from the expected, from the symmetrical, from beauty, from what is efficient , from what is perfect... and, thus, as almost everything that refers to differences, it provokes the hegemony of emotions” (AMARAL, Lígia A. in : Understanding Disability (Hércules). São Paulo, Brazil, 1995, pag.112 ).
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