Lifelong Learning Programme

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Training > Experiences

Personal Experience

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Changing point of view

Language: English
Country: Italy
Typology: patients and relatives
Fifteen years ago, I had a dream and a program for life. We were a young couple that expected a baby, a couple like any other. And, just like many parents, I felt excited and happy about this new life that was coming. “Mongoloid!”, that whispered word, murmured by a nurse, immediately after the birth, was like a cold shower. That word just completely turned me inside out in an instant. I took that little creature in my arms; she was my daughter, she was Alessandra and she was beautiful. In that moment I felt quite clearly how much she was going to need us, without us she would not have any chance. For her sake, we needed to overcome our fears and the pain we were feeling. Until that moment, I had the idea that handicap was foreign to me, it did not concern me, it was somebody else’s problem, it embarrassed me and it worried me when I met it in the street, because I did not know how to face it; whenever possible, I avoided it. In that moment, fifteen years ago, I came right up against handicap, but we did not perceive it in the bundle we held in our arms, we did perceive it in the eyes and pitying attitudes that surrounded us. I saw a baby, a precious being; I saw my daughter, who needed affection and tenderness, like all the babies in the world. Day after day, I was learning to be a father. I don’t think I’m more capable than others are; I don’t have any particular abilities or gifts that make me a special Dad. I do what most parents do in this world; when I look at Alessandra, I see a young girl. When I look at her I don’t see a “case”, I don’t see the “pathology”; I see above all a person with an incredibly rich interior life. My experience is that, independently from the fact that a child has different abilities or not, every parent has enormous possibilities that may be employed by the professionals he meets. I know I’m a living history book, carrying the memories of all our experiences; I’m the one who bears the responsibility for my daughter is growing up and becoming a person. As a parent, I’m the one who connects up all the professionals who work with her. Every professional sees a particular aspect of her growth, but only the parents have the possibility to see the whole picture on a daily basis and to have overall control. Often, the medical and educational professionals run the risk of seeing only stereotypes, of classifying and labelling. It sometimes happens that amid these stereotypes they forget that every child is different and unique. Down’s syndrome children are not all the same, as some people think, but are different one from the other, just like everyone else. Evaluation tests are performed but the risk is, and it happens, that they become boundaries that limit the goals that people working with the child with difficulties may aim at, thus neglecting a lot of potential for learning. They end up working with what the child can’t do rather than what he or she can do. Children with difficulties have the right to equal learning opportunities, and to reach that goal it’s obvious that an encouraging and motivating attitude works better than a behaviour that is negative and frustrating. Often the child with special needs is not considered to be a student in class and therefore a student of all the teachers; unfortunately, the child with difficulties is sometimes dealt with as though he or she were the student of the support teacher. This impression is often confirmed when, after asking how she’s getting on, the class teachers reply: “I don’t know, but I’ve seen her doing some work with the support teacher.”. Among her many problems, Alessandra has a cognitive delay, and this means we have to work hard to give her the greatest opportunities for learning. We have met a professional educator who understands our needs, and has helped to intensify and coordinate useful stimuli for our daughter’s progress. As far as our experience of schooling goes, although it is overall positive, we have the impression that our daughter hasn’t been given the greatest educational opportunities, even at an appropriately differentiated level. And that’s the result of different factors: on the one hand, we fear that sometimes, as a result of our daughter’s meek and calm nature, her attendance at school may be simply a presence, not an active participation in the activities of the class. On the other hand, to avoid this, we as parents have to try diplomatically to increase the sensitivity of the teaching staff, we have to think and work as a network so that our daughter has the same opportunities (even at an appropriately differentiated level). The worst thing that can happen is to meet professionals who think they are all-powerful, who don’t need any help to grow up themselves and to help our children to grow. Some lack the ability to listen and therefore to participate in a two-way communication, because they are prisoners of their own way of seeing things. Our daughter can’t be the responsibility of the support teacher alone; she must be taken on by the whole teaching body, otherwise, there’s no real meaning in her mainstream schooling. Now we’re at the beginning of a new academic year and we’re working on that goal. A goal that might seem to be taken for granted but, in reality, it’s not always like that. School by itself is not enough; the whole of our society needs to evolve towards acceptance. Alessandra has had two open-heart operations, one in Turin (a real disaster, but that’s another story) and another in Genoa. During her stay in Genoa, my daughter got to know a girl of eighteen from Naples, and I have to say that this girl was a real friend to her. I was left standing with my mouth open while this girl was talking with Alessandra; she didn’t talk down to her; she treated her like an equal. She didn’t seem to notice that my daughter has Down’s syndrome; she just talked about her friends as she would talk with any other girlfriend. When they were in hospital, if Alessandra didn’t want to get up early she would ask her “Why, what’s wrong with you?” Even now, they phone and write to each other. What a shame that this kind of girl is as rare as hen’s teeth and that she lives so far away, because let me tell you that Alessandra doesn’t need “good” pitying people around her, but male and female friends who treat her as one of them. When people meet someone with difficulties they tend to adopt a permissive attitude (being “good”) so that “since they’re like that” anything they say or do is “OK”, and then they hide behind a meaningless grin. I don’t know how many of you have ever happened to meet a group of handicapped people accompanied by volunteers out shopping in a supermarket or just about town. Well, that’s the image that depresses me most, that’s the image that makes me feel bad. We now have the best public schools and the best specific legislation in Europe, I’ve met other Europeans, parents and professionals who came to Turin for an international conference, and I can guarantee you that they are very interested in our public schools which give a model for mainstreaming that they could follow, but which could also be improved in my opinion. If I think of my daughter’s future and of the possibility that, when we’re no longer here, she could end up in a special school or in a care centre, I get depressed, I feel bad and I despair. Of course, I realize that for some there’s no alternative and that without the work these people do and without their dedication and passion, the life of those people would be real hell but these images make me look desperately for another solution. Do you know why, after fifteen years, I decided to speak publicly and to tell my story? It’s because, some time ago, I was invited to a meeting where I heard Prof. Riziero Zucchi speaking and he talked about the role society used to play and how that has changed. He talked about how society used to have a role in educating and how it was united, where everyone knew and helped each other, a society that we seem to have forgotten. It was this experience that pushed me to “get on a soap box” and tell my story. It’s the need I feel to involve you, to do something so that everyone of us, when we see a person with Down’s syndrome, a wheelchair, or anybody with different abilities, we know they’re not from Mars but people with emotions and feelings just like us….someone who shouldn’t be excluded or put away or even exterminated as happened under the Nazi regime or under other totalitarian regimes (many “different” people have been exterminated in the course of history). To be able to understand what integration and acceptance really mean, we need to be able to put ourselves in the shoes of the people with different abilities, we need to ask ourselves how they feel and how we would feel in their place. In my opinion, that’s the only way to completely understand the meaning of an integrated and accepting society. We still find it hard to think about socialising and being friends with people who are different from our stereotypes and us. To feel good and to satisfy our conscience, it is easier to give money to organisations far from home. Being friends and socialising with people with disabilities is still too much commitment for us. Right now, I’m very worried; I’m worried because I hear talk about budget cuts and naturally these cuts are more unfair when they affect the weakest members of society. The number of support teachers will be cut when there weren’t enough in the first place, and teachers with no qualifications become support teachers. Sometimes these people are willing; sometimes it’s just a job. Today there’s the risk that, if we’re not careful and if we don’t work together, we may start going backwards instead of forwards, back to an unpleasant past, a past filled with asylums and special schools or worse, we may go forwards to a future where only money, appearance, perfection and uniformity count.

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